"Sezon na kleszcza"

[nadia78]

Co o tym myslicie?
Taki bedzie roboczy tytul listu (artykulu), ktory mam zamiar napisac.
Teraz tak, napiszcie prosze krotko(ale naprawde KROTKO)
1.od kiedy sie zmagacie z ta choroba?
2.jaka byla pierwsza diagnoza?
3.jak dlugo was leczono?
Jezlei ktos chce podac jakies dane to moze wojewodztwo bylo by o.k.
Aha no i nie wiem jak sklasyfikowac wtedy Ciebie artur? masz najwieksza wiedze
na ten temat i nie wiem czy chcialbys pozostac anonimowy ?

[wawan1]

Witam.
Uważam pomysł z listem za początek walki, (moze już nie z wiatrakami) o
zdrowie. Dobry pomysł. Trzeba zacząć docierać do mediów z tym problemów, może
najpierw jak sugerujesz-stacje radiowe, a może potem choćby kobiece kolorowe
tygodniki, to jest bardzo poczytne.
A teraz odpowiedzi na Twoje pytania:
Ad. 1) Pierwsze objawy wystapiły 6,5 roku temu. (bóle kostno-stawowe, zawroty i
bóle głowy, ogólne rozbicie)
Ad. 2) Pierwsza diagnoza - nerwica i problemy z kręgosłupem( te nota bene były
niewątpliwie), choroba tarczycy (też się potwierdziła - niestety) potem choroba
reumatyczna
Ad.3) Leczę się 3 miesiąc, gdyż choroba wówczas jeszcze anonimowa odezwała się
po 3-4 letnim uśpieniu i dopiero w X.2004 ją wstępnie zdiagnozowano.

Życzę powodzenia, chętnie dołącze się do zamiarów szerzenia "prawdziwych"
informacji nt. borelki. Aha, i nadal marzy mi się utworzenie tego
stowarzyszenia, stworzenie własnej strony www, gdzie moglibyśmy publikować
np.tłumaczenia anglojęzycznych tekstów o tej paskudnej chorobie.

[dorota013]

Witam, pomysł uważam za świetny, chociaż z góry przepraszam, że muszę go trochę
skrytykować. Sam tytuł jest zbyt typowy i przez to nikt nie zwróci na niego
uwagi, można go zobaczyć w wielu gazetach około maja, kiedy dziennikarze
przypominają sobie, że można zaliczyć wierszówkę za tekst o szczepionce na
kleszcze.Skądinąd to jest wg mnie dobry termin na taki artykuł w prasie,
chociażby lokalnej, bo go zamieszczą, a jeśli będzie dobry to zostanie
wspomniany nawet w mediach ogólnopolskich. Tu, dobrze byłoby się
też "podeprzeć" stowarzyszeniem, o którym pisała Wawan, ale to chyba za długa
droga prawna (trzeba je zarejestrować w sądzie, musi mieć 15 członków, musi
mieć siedzibę i statut - tak mi się przynajmniej wydaje).
Sam tytuł powinien być bardziej chwytliwy, ale niestety nie potrafię dać
przykładu. Tekst nie może być zbyt długi, dlatego nie jest chyba zasadne
zamieszczanie skrótów choroby wszystkich osób z tego forum (chyba, że dla
podajemy je dla lepszego poznania nas samych). Zamiast tego proponuję, żeby
znalazło się tam kilka spektakularnych przykładów osób borykających się od
dłuższego czasu z boreliozą i polską służbą zdrowia. Np. 1. przykład osoby
leczonej klasycznie na boreliozę 1 miesiąc u której po kilku latach na
podstawie badań i objawów ponownie stwierdzono borelkę. 2. osoby, która nie
przypomina sobie kontaktu z kleszczem, ale u której objawy zdiagnozowano metodą
prób i błędów po długim, niestety cierpieniu pacjenta. 3. historię osoby, jeśli
ktoś zna, która zmarła na boreliozę mimo leczenia - wiem, że to żerowanie na
ludzkiej tragedii, ale media to lubią, a poza tym dopiero to trafia do ludzkiej
wyobraźni. 4. przykłady osób, które mimo typowego leczenia znalazły sie na
rencie, np. leśnicy, bo to chyba najlepszy dowód, że kilka tygodni
antybiotyku "nie załatwia sprawy" + pokazanie konsekwencji tej choroby, np.
wózek inwalidzki. Wymienione postaci w artykule, chociaż anonimowe, musiałyby
zgodzić się na ewentualne podanie danych osobowych dla redakcji, by ta w razie
czego je znała, czyli, że nie jest to opowiastka z gatunku fantastycznych.
do tego 2 zdania jak się leczy w Polsce - typowo i jako przeciwwagę - co zaleca
Burascano. Przepraszam, że tyle tego wyszło.

[nadia78]

dzieki za uwagi
Jak napisalam jest to tytul "roboczy" jaki bedzie naprawde sie okaze.
I oczywiscie nie mam zamiaru opisywac wszystkich przypadkow ale po to chce
zebrac te informacje, zeby wlasnie jakos je usystematyzowac.
A po trzecie nie mam zamiaru pisac eseju, wlasnie raczej wolalabym przekazac
esencje informacji, problem, jakis zalazek z ktorego by powstala audycja a to
juz nalezy do pracy dziennikarza. I jak bedzie dociekliwy i zainteresuje sie tym
tematem to mysle, ze moze wyjsc z tego cos dobrego.

[mehlina]

Cześć!!Nadia masz bardzo dobry pomysł!!chetnie Ci pomogę!!a moze na poczatek
faktycznie napisac do "trójki"??ja jedynie mam znnajomości w lokalnej telewizji
poznańskiej-moge zaopytac czy ewentualnie byłaby jakas szansa i jak to widza!!>
??Odpowiadam na twoje pytania:
AD.1
OD 4 LAT
AD.2
zapalenie stawów, stres, obciążenie genetyczne do reumatyzmu
AD.3
3 tygodnie doxycyklina-potem badanie sprawdzajace po 3 miesiącach-wynik wzrost
IgM (test elisa)- ogólnie minimalna poprawa samopoczucia- mniejsze bóle stawowe-
i co z tego ,bo doszło wiele innych..
lecze się w Poznaniu( a własciwie cały czs szukam lekarza
pozdrawiam!!

[wawan1]

Ja będę się upierać przy swoim, chociaż absolutnie poprieram pomysł artykułów w
mediach czy prasie. Stowarzyszenie było by tą formą organizacji, z którą ze
względu na status prawny i rejestrację ktoś mógły zacząć się liczyć lub chociaż
zaczął myśleć. JAk już wpominałam w poprzednim wątku bardzo chętnie zaangażuję
się w tworzenie tego "tworu". Albo jeśli się nie uda na początku stworzyć
stowarzyszenia, to po prostu jakieś inne zrzeszenie, które nie wymaga takich
procedur biurokratycznych.
Pozdrawiam.

Co pisza inni w popularnej prasie

[artur737]

Docs At Odds Over Best Lyme Disease Treatment
Experts Say There's A Lot To Learn About Disease

POSTED: 1:51 pm EDT April 14, 2005
UPDATED: 2:00 pm EDT April 14, 2005

BOSTON

Co pisza inni w popularnej prasie-przyklad

[viiking]

A Plea To Doctors
by Marjorie Tietjen
June 17, 2004


Lyme Disease is the fastest spreading vector borne disease in the country. The question must then be asked as to why this most serious degenerative neurological disease is essentially being downplayed, ignored and fraudulently misrepresented?

Doctors across the country are dismissing and turning away thousands of seriously ill patients. Many doctors even refuse to consider the possibility that those previously diagnosed with such diseases as ALS, M.S, Chronic Fatigue Syndrome, BiPolar Depression, Fibromyalgia, Alzheimer's, etc, may actually be infected with Borrelia Burgdorferi ( Bb... the causative agent of lyme disease ) and other coinfections. This microbe may be the main cause of various autoimmune diseases and other vague conditions or in some cases it may be a co-factor. Certain labs which look for the L form of Bb are finding this pathogen present in much of the chronic illness population.

Respected researchers , such as Lida Mattman ( author of "Stealth Pathogens" ), are finding it more and more difficult to find blood free of Bb for control purposes. Bb has not only been found in ticks but also in human tears, breast milk, semen, mosquitoes, cow's milk, fleas, mites....even well water and african dust. This attests to the extreme hardiness of the lyme spirochete.

Almost every patient we come into contact with is reporting that doctors are reacting very strangely when presented with the idea that the patient may be ill with Chronic Lyme Disease. Doctors are taught that there really isn't such an entity as Chronic Lyme Disease ( meaning chronic active infection ). This is a blatantly false teaching and I will list a couple of links later in this article which will prove that Lyme can be a persistant infection. The theory that Yale University puts forth to the medical community....and it is only a theory without proof to back it up....states that after three to four weeks of antibiotics a person is automatically cured. They contend that if on the 31st day , the day after treatment is stopped, then the patient no longer has an active infection but that it has suddenly turned into a disease of an autoimmune nature. This theory is absurd.. Testing is so unreliable that there is no way to p rove the lyme spirochete has been totally eradicated. If the same symptoms persist...so should the treatment.

The mere mention of this disease to most doctors seems to trigger anger, fear, sarcasm, condescending attitudes, denial and often even explosive behavior. Patients often leave the doctor's office in tears, feeling they have been emotionally attacked. This of course only compounds the stress of this legitmate illness and often weakens the patient further. Many doctors tell the patient they are depressed and that they need antidepressants which will solve all their problems. Many of us are beginning to think that it's the doctors who need something to calm them down. I'm really not trying to be sarcastic and I don't want to come across as if I'm attacking the doctors. We realize they are also victims of the system. It must be very frustrating for doctors to be taught one thing and then have patients come in demanding something totally opposite to what the doctors have been told is Truth.

Are doctors frightened of something that the public is not aware of or is this abnormal behavior and resulting non treatment due to ignorance? Is there an intentional lack of education concerning this issue? It certainly seems so and I will tell you why it seems so.

Most testing for Lyme Disease is very inaccurate and therefore can not be used reliably in the diagnosis or "ruling out" of Lyme Disease. The Centers For Disease Control states that their very restrictive diagnostic criteria should only be used for surveillance purposes and not for diagnosis. However, my chief complaint is that no one is encouraged not to use this criteria. There is no promotion whatsoever of this stance of the CDC. As a result, a very large percentage of the population is left undiagnosed, misdiagnosed and untreated.

The Centers For Disease Control also states that Lyme Disease is a clinical diagnosis. This means that doctors should use their own judgement after considering the patient's symptoms and history. Laboratory testing should only be used as an adjunct.

Doctors need to educate themselves as to the extensive list of symptoms which are associated with Lyme Disease and it's coinfections. Once familiar with the general symptom complex it is very simple, even for lay people, to predict and conclude who is probably stricken with Lyme Disease. Reports from young doctors confirm the suspicion that not much is taught concerning Lyme Disease, in medical school. It's an unfortunate situation that doctors and patients alike have to seek their information from sources other than the mainstream. Patients are in the midst of this unprecedented controversy and are realizing that perhaps this lack of education is intentional. The studies and doctor's personal experiences are out there, which show unrefutably that Lyme Disease can be a chronic active relapsing infection. The medical authorities refuse to acknowledge this and continue to thwart proper diagnosis and treatment by refusing to educate doctors as to the facts concerning this disease.

The Lyme Disease pandemic is such an extreme problem in Connecticut that a special Hearing was held in February of 2004. The purpose of this Hearing was to bring to light the fact that Lyme Disease can be chronic and that Lyme Disease can and does sometimes remain an active an relapsing infection. The microbe which causes Lyme Disease is pleomorphic ( changes form) and as a result is very adept at evading detection. There may, at times, be autoimmune factors present but this does not exclude the fact that an active infection can be present along with autoimmune markers.

The Centers For Disease Control had to be sternly persuaded to attend the Connecticut Hearing. Attorney General Blumenthal strongly advised the CDC to send out special warnings or notices to doctors, labs and health departments, for the purpose of promoting and encouraging the enforcement of their statement that the CDC criteria should not be used for diagnosis. I recently contacted the CDC to ask what progress had been made in this area. I was referred to an article in a magazine put out by the CDC which supposedly states very clearly that doctors should not use the CDC criteria for diagnosing lyme using the Western Blot. According to them , this is their big effort to educate. The CDC official agreed to send me the link to this article...however I never recieved it. I then e-mailed the CDC ,for more specifics, and have yet to recieve a reply.

The extent of misdiagnosis and morbidity concerning Lyme Disease is staggering. Despite the undistributed statement regarding their diagnostic criteria, most doctors and labs are basing their conclusions on these very restrictive guidelines or parameters. In addition testing for antibodies in tertiary late stage Lyme Disease is almost futile due to many factors which interfere with the antibody response. A more reliable test...such as the Bowen Test, isolates the actual L form of the Lyme microbe.

Why isn't there an extensive campaign on the part of the CDC to educate in this most crucial matter? It makes no sense that this agency is not doing so. This can lead one to the conclusion that perhaps the use of such restrictive testing criteria, keeps the extent of this pandemic under wraps, to the benefit of pharmaceutical companies and other corporations.

In the past we have held medical conferences for doctors, lab technicians and nurses, in the local hospitals. Invitations to all doctors were given to the hospitals to pass out to their physicians. In all cases doctors were conspicuously absent. Our speakers were very well known and respected doct

[viiking]

Why isn't there an extensive campaign on the part of the CDC to educate in this most crucial matter? It makes no sense that this agency is not doing so. This can lead one to the conclusion that perhaps the use of such restrictive testing criteria, keeps the extent of this pandemic under wraps, to the benefit of pharmaceutical companies and other corporations.

In the past we have held medical conferences for doctors, lab technicians and nurses, in the local hospitals. Invitations to all doctors were given to the hospitals to pass out to their physicians. In all cases doctors were conspicuously absent. Our speakers were very well known and respected doctors who specialize in Lyme Disease. They offered very valuable information to the lab technicians, nurses and patients who did attend. Evidently the medical doctors were just not interested, they were pressured into not attending or they were never given the invitations.

Doctors, many times, express the idea that they don't have enough time or energy to investigate into the many diseases currently afflicting our world. This is certainly understandable but perhaps the root cause of many diseases involves only several microbes which present themselves differently in each individual. This appears to be the case with Lyme Disease...the second "Great Imitator" next to syphilis....another spirochetal disease.

It is our hope that more of those in the medical profession will take it upon themselves to investigate both sides of this issue. It is vitally important to keep the mind open to the experiences, research and protocols of those lyme literate doctors who are working in the trenches with the realities of Lyme disease. Experience is always the best educator. And most important of all....good doctors always really listen to and believe in their patients. Effective physicians tell how they have learned more from their patients than from anywhere else. After all, the patients are the ones experiencing the disease first hand. It is interesting to note that many lyme literate doctors have experienced Lyme Disease themselves and therefore understand the enormity and complexities of the disease. Most of us are not "just depressed" nor are we hypochondriacs. Lyme Disease can affect every body system and as a result the number of symptoms which can be experienced, is overwhelming. The fact that many patients are glibly told their symptoms are due to depression, is doing them a great injustice. Lyme Disease can cause depression, anxiety and many many other neurological manifestations....but the point is...these patients need antibiotics....just as syphilis patients need antibiotics...to eradicate the source of their problems. Antidepressants just cover up the symptoms which allows the infection to simmer and progress below the surface.

I blame the medical system which appears to be educating doctors towards their own selfish purposes. The insurance companies and pharmaceutical companies play a very large role in the medical system and in the education of doctors. We all know that corporations don't have a conscience and don't care about the individual. They care about profits and that's what motivates them. We know that drug companies profit greatly by promoting many symptomatic treatments for one disease rather than a single curative treatment. Doctors are also divided up into so many subspecialties that it makes it very difficult for one doctor to ever see the patient as a whole person and to be able to discern the connectedness of the many symptoms which present in Lyme Disease.

For example.....a single patient may be separately diagnosed with carpal tunnel syndrome, fibromyalgia, heart palpitations, irritable bowel, seizure disorder, TMJ, foot pain, conjunctivitis, acid reflux....and also be separately treated for each and every condition, with either surgery or symptomatic treatments. This approach is extremely inefficient, costly and very dangerous. Many times the basic underlying cause of all these symptoms or so called diseases, is found to be due to one organism such as babesia, borrelia burgdorferi, different strains of mycoplasma or even a combination of these microbes. Why isn't testing for these organisms routine when someone presents with a chronic illness....especially when the patient is from an endemic area?

For more clues as to why the medical system is set up in this crazy fashion, please visit congregator.net/medicalnews/tietjen/index.html

For those of you who are sincerely concerned about the welfare of your patients and the future of your own family's health, please take the time to study and ponder the following links.

"Lyme Disease: The Sensible Pursuit Of Answers" By Kenneth Leigner www.lymeinfo.net/sensiblepursuit.html

Especially note the "Persistence File" near the top www.lymeinfo.net/lymefiles.html

www.bowen.org">

[wawan1]

isip.sejm.gov.pl/servlet/Search?todo=open&id=WDU19890200104Eh

[artur737]

Oswiadczenie dla prasy

The bacteria that causes Lyme disease can live both inside and outside human cells. Massive doses of antibiotics can kill the Lyme spirochetes outside cells, but not those inside cells (1). A study in the medical journal, Infection, shows that people unsuccessfully treated for Lyme arthritis continue to excrete the Lyme spirochete in their urines (2). These experiments help to explain why short term-treatment with antibiotics fails to cure Lyme and other infectious arthritides.

Lyme disease is caused by a tick bite. Several days later, the person may feel sick and a bull's eye: a red dot surrounded by a red circle, forms at the site of the bite. If a person is treated with the antibiotic, doxycycline, at this point, he has a 99% chance of being cured. However, if he is not treated, the bull's eye disappears and the patient gets better. However, many months later, the person can develop joint pains or nerve damage. At this point, treatment may be difficult.

By Dr.Mirkin, MD

1) HJ Girschick, HI Huppertz, H Russmann, V Krenn, H Karch. Intracellular persistence of Borrelia burgdorferi in human synovial cells. Rheumatology International 16: 3 (SEP 1996): 125-132.

2) ME Bayer, L Zhang, MH Bayer. Borrelia burgdorferi DNA in the urine of treated patients with chronic lyme disease symptoms. A PCR study of 97 cases. Infection 24: 5 (SEP-OCT 1996): 347-353.

3) R Gasser, E Reisinger, B Sedaj, R Horvarth, G Seinost, A Keplinger, I Wendelin, W Klein. Oral treatment of late lyme borreliosis with a combination of roxithromycin and co-trimoxazole - A pilot study on 18 patients. Acta Medica Austriaca 23: 3 (1996): 99-101.

CNN - skrypt z dziennika telewizyjnego: Maj 2005

[viiking]

CNN - Chuck Roberts - Lyme Disease is a growing problem this time of year. If you are considering hiking, camping, or any outdoor recreational activity in a wooded area you may be at risk for Lyme Disease. Jacque Stafford from Shape Magazine joins us with details on ways to reduce the threat. Hi Jacque! Hi there.

Chuck Q - What are the symptoms of Lyme Disease?
Jacque - Well unfortunately someof the symptoms really do mirror many other illness and it is very difficult to diagnose, but you can get joint pain, you can have paralysis, or migraines, cardiac problems, and it can even result in death. So it is extremely important to go to your Dr. if you do suffer from any of these symptoms and just make sure that they are not misdiagnosed for other illnesses as well.

Q - So, presumably there are alot of people walking around with Lyme disease but don't know it because it's been diagnosed as something else!
A - Very much so. So it's very important for you to go and see your Dr. and get double checked that it's not actually Lyme disease that is affecting you.

Q- So a clinical diagnosis is essential.
A - Very important.

Q - How important is it in catching this early?
A- It's extremely important to catch it early because unfortunately because it is extremely prevalent, and its much more prevalent than people actually think ____.
One of the things that we've found out is that Lyme Disease is the fasting growing disease in the United States. It is actually growing at 5 times the rate of HIV and AIDS infections, and there are over 300 known bacteria of the Lyme Disease surfacing among the Unites States. Really nobody is immune to this from children to old age - nobody is immune.

Q - Is it always treatable?
A - It is treatable. You do need to take precaution. It is treatable and you can definitely get over it. The one thing we really advise is that because it is caused by deer ticks, mice and rodents, which really flourish in areas with long grass, trees, and underbrush. It's very important when you are going on activities like golfing and biking and hiking to really protect yourself. We do have some information about how you can protect yourself.

Q - Yeah, let's talk about how to best protect ourselves. (Shows full slide with these points.)
A -
* In grassy area, wear long-sleeved clothing and tuck pant legs
* Wear light colored clothing
* Use insect DEET or permethrin repellant
* Inspect yourself and your children once you come back indoors
(Source Shape Magazine)

She adds, remove any ticks immediately using a tweezers.

Q - Can you see the tick usually or sometimes it's invisible?
A - You can see the ticks that's why we recommend you wearing light colored clothing, it does make a dramatic difference in making sure you spot them very early.

Q - And do most Dr's have the test available - they have to send it to a lab, right, it's a blood test? How does that work?
A - It is. It's very important to go and see a dr and get a lab test and be able to ascertain exactly what Lyme disease - whether it is one of those afflictions or it could be as I said, something like a chronic fatigue syndrome, or multiple sclerosis, or even arthritis. Its very important to get the right information from your dr.

Q- Goodness sakes. And finally, how prevalent is it? Is it getting worse?
A- It is getting worse and there is a wonderful website that you can turn to and it's www.turnthecorner.org and that's a very comprehensive website that talks about all the new research, all the new developments in Lyme Disease. It was started by a young female that actually has the lyme disease herself ad is very young.

Q - A lot of people think they have Chronic Fatgue syndrome when they get this because it really mimics a lot of different illnesses, correct?
A - It is an incredibly debilitating disease but people don't know enough about it and often are unaware of the symptoms. So it is very important if you feel that you are feeling run down, and you are feeling extra tired but your not quite sure what's wrong, its very important to go and see your Dr and just get this eliminated.

Q - Allright, Jacque Stafford for Shape Magazine. One more time, that's the website for information on Lyme Disease it is www.turnthecorner.org

"Polityka"

[freshka]

"Polityka" :))))

[freshka]

No znowu ten enter!

A wiec: w Polityce nr 17 z 30.04, jest artykul "Niepokonane, zapomniane" o
chorobach zakaznych, ktore sa znow w natarciu.
polityka.onet.pl/162,1226284,1,0,2501-2005-17,artykul.html
Liczylam, ze autor wspomni cos o boreliozie, ale nic z tego. Dla europejczykow
grozne sa choroby tropikalne atakujace nieswiadomych turystow... Wydaje mi sie,
ze problem mamy tuz pod nosem i nie musimy nigdzie wyjezdzac

Wlasnie sie zastanawiam, czy nie napisac do autora, pana Pawła Walewskiego, bo
widze, ze interesuje sie chorobami zakaznymi - artykul z 1999 "zapomniane
zarazy" polityka.onet.pl/162,1025037,1,0,2223-1999-50,artykul.html

Moze zajalby sie nie tyle zapomniana, co wogole nie naglosniona "zaraza"?

[artur737]

A chyba masz racje bo zostal Osobowościa Roku 2003 w Ochronie Zdrowia
za rzetelność i wartości publicystyczne w dziennikarstwie związanym z problematyką zdrowotną.

email ogolny do redakcji jest [e-mail] a prywatnego nie moge znalesc.

[freshka]

Niestety, w "papierowej" wersji tez nie ma podanych maili do poszczegolnych
autorow.

Trzeba by pisac na adres ogolny, z zaznaczeniem, ze to do tego pana, albo na
temat ostatniego artykulu. Mysle, ze warto zwrocic uwage "osobowosci roku",
moze sie tym zajmie?

[artur737]

Mysle, ze zawsze warto probowac. Zupelnie niedawno Reuters Medical News wylansowal publikacje na temat borelizy, ktora byla tak klamliwa, ze nie zaslugiwala na przydawanie jej slawy. A niestety wiadomo, ze jak Reuter cos oglosi to potem tysiace gazet i radiostacji oraz stacji telewizyjnych to pozniej powtarza w bardziej spopularyzowanej formie.

Wtedy udalo mi sie zdobyc prywatny email autorki z Reutera Amy Norton i powiadomilem kogo moglem. W rezultacie otrzymala chyba ze 40 listow (w tym takze moj).
Wiem, ze dwoch lekarzy nawet zlozylo skarge do redaktora naczelnego Reutera za lansowanie klamliwej publikacji.

A teraz sie przygladam, czy odnioslo to spodziewany skutek.

Na razie w ogole nie dotykaja tematu boreliozy.

[freshka]

Tylko ze ja nie jestem dobra w takich elaboratach, a zeby jeszcze
zainteresowaly pana dziennikarza, to juz na pewno nie No i trzeba by
zaserwowac mu jakis zestaw artykulow, ktory poparl by to, co napisane w liscie
(gdzies tu chyba na forum bylo cos w tym stylu)

[artur737]

Moze akurat zadziala. Nie sprobujesz, nie dowiesz sie.

Napisz od serca i napomknij, ze moze dostac troche materialow choc gl po angielsku. Jak sie zainteresuje to dostanie paczke emailem.

[artur737]

Publikacja, ktora mnie wtedy tak wkurzyla to byla:

Some Lyme disease Web sites misinform - study Health eLine 2005-01-25

Wlasciwie wszystko w niej bylo zle a autorzy sugerowali jakoby sie znali.

[artur737]

BREAKING NEWS!
State of California Lyme Disease Awareness Week May 4-10th, 2005

Bev Feldman of LymeSucks.org, introduced the idea of a Resolution declaring a Lyme Disease Awareness Week in the state of California to her state Senator, Jack Scott. Senator Scott was ably helped by CALDA (California Lyme Disease Association) and Dr. Herb Dorken

[artur737]

Tick trauma
Tiny insect nearly did in veteran deputy
By JODIE TWEED
Staff Writer

CROSSLAKE

cd

[artur737]

Bernier said St. Joseph's has already had three patients hospitalized with severe cases of ehrlichiosis this spring and the tick season has just begun.

Symptoms of Lyme disease include a bull's-eye rash that may have a reddened area with a clear area in the middle at the original site of the tick bite. It also may appear in several other places in the body. Other symptoms include a fever, headache, chills, muscle and joint pain.

Ehrlichiosis symptoms usually start about 5-10 days after a person has been bitten by an infected deer tick or black-legged tick but can take up to a month to appear. Symptoms are similar to Lyme disease and include a sudden fever of 102 degrees or more, chills, shaking, fatigue, severe headache, muscle and joint pain, nausea and vomiting, cough, stomach pain and a sore throat. It is rare to have a stuffy nose or sinus problems with Ehrlichiosis, which can help distinguish the disease from the flu, a bad cold or sinus trouble. Like Lyme disease, ehrlichiosis can be treated with antibiotics.

Mezzenga has been on medical leave since March and is undergoing physical therapy for his knee injury. He said he's trying to get better so he can return to the sheriff's department, a job he's enjoyed for 27 years.

JODIE TWEED can be reached at [e-mail] or 855-5858.

Wlk Brytania - wzrost ilosci boreliozy ostatnio

[artur737]

Alarm at sharp rise in tick disease
By Valerie Elliott, Countryside Editor
Time May 30 2005



HEALTH experts are concerned at a sudden increase in the number of British cases of Lyme disease, an infection carried by ticks that can be fatal.
In Scotland the number of sufferers went up 35 per cent between 2003 to 2004. In England and Wales there were 97 cases 10 years ago and 320 in 2003. Specialists believe that the true incidence could run into thousands because people, doctors and vets do not know much about it and do not seek treatment.
Patricia Hewitt, the Health Secretary, is under pressure to raise public awareness of the disease and to ensure that GPs and medical students are taught about it.
Some believe that she should make it a notifiable disease in England and Wales, as it is in Scotland. British military personnel and their families already have to notify their medical service if they get it.
Anyone who goes to the countryside is at risk of infection. The disease can also be picked up in parkland where there are deer. City-dwellers who visit parks such as Richmond, Bushy or Victoria are at the same risk as a stalker in the Highlands or a visitor to a stately home.
British hotspots are Thetford forest in Norfolk, the New Forest in Hampshire, the Lake District, the Yorkshire Moors, the Scottish Highlands and the uplands of Wales.
But it is also widespread in the United States, Germany, Hungary and the Netherlands and exists on every other continent too. Between 10 and 20 per cent of British victims are thought to have contracted the disease abroad.
Many people may be carrying the antibody after a tick bite years ago, but showing no symptoms. In those cases the full-blown disease can be triggered by another illness or severe stress.
It causes a rash and stiffness in the joints and, left unchecked, it can affect the central nervous system, causing tingling in hands and feet, or facial palsy. In the worst cases the disease can also affect the heart, liver and spleen and even lead to encephalitis, which can kill. Depression and chronic fatigue grip many patients and ruins their lives.
The symptoms are not identical for every sufferer though — Lyme disease imitates other diseases, which makes it difficult to diagnose.

People should be alert for ticks attaching to the skin and remove them as quickly as possible.
In particular, it is necessary to take care if you are near cattle, sheep, deer, horses and even game birds and seabirds. They can be carried also on hedgehogs, mice and voles.
Dr Darrel Ho-Yen, a Lyme disease expert based in Inverness, spoke of his concern about the rise in the number of cases in this month’s edition of The Field magazine. He believes that the known number of proven cases should be multiplied by ten “to take account of wrongly-diagnosed cases, tests giving false results, sufferers who weren’t tested, people who are infected but not showing symptoms, failures to notify and infected individuals who don’t consult a doctor”.
He believes therefore that in a year in Scotland the numbers have gone up from 430 to 580. Applying his multiplier to England suggests that there are 3,200 cases today.
The Ramblers’ Association has issued urgent guidelines and a new leaflet has been sent to riding schools and trekking centres by the British Horse Society. The UK Lyme Disease Association will hold a special conference at Sheffield University next month.

THE SPREAD OF INFECTION

Lyme disease is caused by the bacterium Borrelia burgdorferi. It is also known as Lyme borreliosis and was named after a cluster of cases that occurred in Old Lyme, Connecticut, in the United States, in 1974
People get infected after being bitten by hard-body ticks (Ixodes species) that have the disease. Ticks get it from birds and mammals carrying the bacterium in their blood
The most common symptom is a rash called erythema migrans, though some patients have flu-like symptoms. This is treated with antibiotics such as doxycycline or amoxicillin
Infection can lead to facial palsy, “viral type” meningitis and nerve inflammation that may lead to tingling in hands and feet, pain or clumsiness. Some people develop arthritic symptoms, which can settle with antibiotics, others experience persistent arthritis
It may be a trigger for chronic fatigue syndrome (ME) or fibromyalgia, a post-infection syndrome
There is no vaccine for Lyme disease
Peak exposure in Britain is April to October
Ticks are tiny spider-like creatures that cannot fly and are common in woodland, heathland and moorland. Unfed ticks are the size of a poppy seed but they blow up to the size of a grape pip when they have been feeding. Larvae are smaller than a pinhead
The risk of infection from an infected tick is low if it is removed from the body within 24 hours of attachment.

[artur737]

DALLAS - (KRT) - Dr. William T. Harvey says he once was a victim of the debilitating disease for which he has been treating Charlie Smith. Or something like it. It was in 1987 in California, he says, just before his 50th birthday, that his life "kind of fell through the roof."

"It was all pain, all brain fog," he says. "I couldn't think anymore. I had to quit my job. I went back to my house in San Antonio and figured that I had a fatal disease and nobody could figure out what it was."

He says he recovered after giving himself massive doses of antibiotics. Another doctor who, like Charlie, had been diagnosed with amyotrophic lateral sclerosis, said Harvey successfully treated him with the same method.

But Harvey's methods are outside the medical mainstream, and many experts are skeptical of his theories.

"One of the things that makes modern medicine such a powerful thing is that there is general consensus on issues and evidence," says Dr. Justin D. Radolf, a professor of medicine at the University of Connecticut and an authority on the bacterium Harvey is treating. "Dr. Harvey appears to be far beyond anything that's evidence-based. He's just basically making up his own rules."

Harvey blames a bacterium, Borellia burgdorferia, for the symptoms he experienced. He says patients like him may be diagnosed with a range of illnesses - chronic Lyme disease, Gulf War syndrome, fibromyalgia or Agent Orange syndrome. Some, he says, are diagnosed with ALS or multiple sclerosis or Parkinson's. Some are told that their problem isn't physical, that their pain is only in their minds.

Harvey believed he had chronic fatigue syndrome, a vaguely defined malady that many doctors didn't believe was real. In 1999, he attended a medical conference on Lyme disease, which causes similar symptoms, although he says he was almost certain Lyme wasn't his problem.

At the conference, he learned of the use of oral antibiotics in treating Lyme disease and decided to treat himself with "high, high doses" of them to see whether they might help his condition, too.

"Little by little, I came out of the disease. Almost," he says. He began taking antibiotics in even larger doses through a catheter and says he achieved complete recovery.

His wife, Pat, had experienced similar symptoms and had been "sick as a dog," in bed for 12 years. She remains on antibiotics. "She's mostly well and highly functional," Harvey says.

In 2000, Dr. Pat Salvato, head of Diversified Medical Practices in Houston, invited Harvey to join her clinic, a chronic fatigue syndrome practice. Eventually, he says, he identified Borellia and another bacterium, Babesia, as agents of the illness.

Of the 900 patients that Harvey has treated over the past four years, he says, about 300 have finished therapy, and their symptoms haven't returned.

His star patient is another physician, Dr. David Martz, an oncologist-hematologist from Colorado Springs, Colo. Martz, now 64, was diagnosed with ALS in May 2003 and had to retire from his practice.

"I had been in the Colorado Springs medical community for 30 years," he says in a phone interview. "I was pretty well-known and respected in that community. Every expert in the community was involved in my care, trying to figure out what was going on. I was hospitalized for two weeks. At the end of that two weeks, they weren't sure what I had, but they thought I probably had early ALS."

A friend of Martz's son saw a newspaper article in Maryland about Harvey and his work. One of Martz's colleagues knew Harvey and put them in touch. In January, Martz was put on high-dosage intravenous antibiotic treatment.

His symptoms are remarkably similar to Charlie Smith's. But for reasons Harvey says he doesn't know, Martz's recovery has been quicker. After six months of intensive treatment, Martz says he was back to 75 percent to 80 percent of the person he once was.

Now, Harvey says, a year after Martz began the antibiotic therapy, a neurologist who specializes in the disease has declared him "symptom free" of ALS.

Radolf says he's skeptical of Harvey's theories linking the Lyme disease bacterium with other ailments. Radolf has done extensive research in Lyme disease and diseases caused by Borrelia burgdorferi and other bacteria.

"Lyme disease does have neurological syndromes," he says. "But regarding neurological diseases such as ALS and MS, I think very few people in the neurological community would accept that these are due to Lyme disease," or Borellia burgdorferi. I don't believe there is any evidence that real, properly diagnosed ALS is caused by Borellia or that it is treatable with antibiotics."

Harvey says his work has not been a scientific study. "I'm just treating patients," he says. "And I treat only one kind of disease - this bacterium, Borellia."

Harvey has moved to his Del Rio, Texas, vacation home, where he spends most of his time writing about Borellia burgdorferi and Babesia and organizing a database to be shared with other physicians. He closed his Houston office in September, and except for Charlie and a few others who were diagnosed with ALS, his patients were referred to other physicians. But the afflicted call, and the doctor is seeing new patients again. (He can be reached through his assistant, Glenda Castillo, at 830-774-4094.)

"I'm starting to understand it, finally," Harvey says. "So are a lot of other docs. I think this thing is just about to pop to the surface."

wystapienie Dr B w senacie

[artur737]

Wystapienie Dr. Burrascano w senacie

There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. They exert strong ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions. They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest.

This group promotes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics.

The truth is that Lyme is the fastest growing infectious illness in this country after AIDS, with a cost to society measured in the billions of dollars. It can be acquired by anyone who goes outdoors, very often goes undiagnosed for months, years, or forever in some patients, and can render a patient chronically ill and even totally disabled despite what this core group refers to as "adequate" therapy. There have been deaths from Lyme disease.

They feel that when the patient fails to respond to their treatment regimens it is because the patient developed what they named "the post Lyme syndrome". They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system.

The fact is, this cannot be related to any consistent abnormality other than persistent infection. As further proof, vaccinated animals whose immune system has been activated by Lyme have never developed this syndrome. On the other hand, there is proof that persistent infection can exist in these patients because the one month treatment did not eradicate the infection.

Indeed, many chronically ill patients, whom these physicians dismissed, have gone on to respond positively and even recover, when additional antibiotics are given.

It is interesting that these individuals who promote this so called "post-Lyme syndrome" as a form of arthritis, depend on funding from arthritis groups and agencies to earn their livelihood. Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff, even if the patient will suffer. This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.

Following the lead of this group of physicians, a few state health departments have even begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diagnosis and treatment than they do. Indeed, I must confess that I feel that I am taking a large personal risk here today by publicly stating these views, for fear that I may suffer some negative repercussions, despite the fact that many hundreds of physicians and many thousands of patients all over the world agree with what I am saying here. Because of this bias by this inner circle, Lyme disease is both underdiagnosed and undertreated, to the great detriment to many of our citizens. Let me address these points in more detail.

UNDERDIAGNOSIS

1. Under reporting: The current reporting criteria for Lyme are inadequate and miss an estimated 30 to 50% of patients. Some states curtailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40%, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline. The reporting procedure is often so cumbersome, many physicians never bother to report cases. Some physicians have found themselves the target of state health department investigators. Finally, to many physicians and government agents rely on the notoriously unreliable serologic blood test to confirm the diagnosis.

2. Poor Lyme disease diagnostic testing: It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases, yet many physicians, including many of those referred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diagnosed clinically, and can exist even when the blood test is negative.

The Rocky Mountain Lab of the NIH, which is the country's best government laboratory for Lyme research had developed an excellent diagnostic test for this illness nearly 4 years ago, yet further work on it has been stalled due to lack of funding. Incredibly, if not for private donations of just $5,000 from the non-profit National Lyme Disease Foundation headquartered in Connecticut, then this reaseach would have had to be abandoned. An additional $30,000 was donated by this organization to allow them to continue other valuable projects relating to vaccine development and disease pathogenesis. Yet, many physicians believe that thousands of dollars of grant moneys awarded by the government to other, outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded.

3. The university and Government based Lyme establishment deny the existence of atypical presentations of Lyme and patients in this category are not being diagnosed or treated, and have no place to go for proper care.

RESULTS: Some Lyme patients have had to see, as many as 42 different physicians often over several years, and at tremendous cost, before being properly diagnosed. Unfortunately, the disease was left to progress during that time, and patients were left forever ill, for by that time, their illness was not able to be cured. Even more disturbing, these hard line physicians have tried to dismiss these patients as having "Lyme Hysteria" and tried to claim they all were suffering from psychiatric problems!

[artur737]

UNDERTREATMENT

1. Because the diagnosis is not being made, for reasons partly outlined above.

2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information.

3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll.

4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae.

5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared. Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative.

6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.

The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease. Thank you.

[artur737]

Publikacja z jednej z kanadyjskich prowincji.

Spreading the Word

What the province says it has done to educate the public on Lyme disease:

- Letters were mailed to all Nova Scotia doctors identifying symptoms to look for. - News release sent this spring from the health department's South Shore district, where the risk for Lyme disease is most prevalent. (It ran May 14 in this newspaper, and a public service announcement went to a local paper.)

- Fact sheet detailing the disease is posted on the province's Health Department website. That was revised in 2005 to include photos from the U.S. Centers for Disease Control and Prevention. Pictures included those of deer ticks and the signature bull's-eye rash.

- A newsletter item on Lyme disease went home from all schools in the Lunenburg area (7,300 copies of fact sheet included) in May.

- The Town of Lunenburg was contacted to distribute letters to homes in postal code areas most at risk.

- Pamphlets were distributed to the Bluenose Golf Course.

- Brochures were sent to tourist information centres.

- The Lunenburg Day Care Centre asked for the information.

- A campground owner copied the fact sheet her child brought home from school.

- Deputy chief medical officer of health Dr. Maureen Baikie, along with medical officer of health Dr. Richard Gould, have done media interviews this spring and summer on the topic.

[artur737]

Nova Scotia

More than a little ticked off
N.S. doctors ignore reality ofLyme disease, victim says

By EVA HOARE / Investigative Reporter / SPEICAL REPORT

EDITOR'S NOTE: Depending on who you talk to, Lyme disease is either on the rise in Nova Scotia or it doesn't exist.

In a series running today and Tuesday, investigative reporter Eva Hoare reveals disturbing new information about the tick-borne disease and how it is taking root in this province.

Perhaps even more disturbing, these stories document how people suffering from the disease have found few sympathetic ears in the medical establishment.

***

It was just a walk on a farm in New Ross, but it turned into a six-year medical nightmare that has left a lasting bitterness about the Nova Scotia health-care system.

Something happened during Kelly Burke's stroll on her father's farm. She was bitten by a tick. She remembers removing the tiny parasite from a spot on her wrist a few days later, in May 1999.

What she didn't know was she had contracted Lyme disease from that tick bite. For her, the more significant problem was that it went undiagnosed for almost four years. Doctors simply didn't believe she could have the disease.

Now Kelly Burke says Nova Scotia's medical system failed her, from denying she had Lyme to refusing to treat her for it. The doctors did tell her she probably had something else, multiple sclerosis, maybe, or psychiatric problems.

Her symptoms were typical of Lyme disease: extreme fatigue and arthritis, blurred vision, weak muscles, partial facial paralysis and bouts of memory loss.

But the doctors didn't see that: they suggested MS, Sjogren's syndrome (an autoimmune disorder), and sleep and psychiatric disorders.

They put her through dozens of tests, prescribed drugs, including two antidepressants: Celexa and Wellbutrin. She took a psychiatric evaluation. She was cleared on that front.

"You are in just so much pain. It's like being in late-stage labour for about six years," said Mrs. Burke, a mother of two from Shad Bay.

Desperate, Mrs. Burke and her husband travelled to Connecticut, where she was finally diagnosed. (The disease takes its name from Lyme, Conn.)

She got the news from one of the leading American experts on Lyme disease, Dr. Amiram Katz, a neurologist and assistant clinical professor at Yale University.

But even after the diagnosis in March 2003 - about 34 months after the signature Lyme disease bull's-eye rash appeared on her arm - Nova Scotia medical health officials wouldn't concur, the couple said.

"In the United States I have Lyme, but I just don't here in Nova Scotia," Mrs. Burke said in a recent interview.

In an April 25, 2003, notation from Mrs. Burke's medical file, Dr. Walter Schlech III, an infectious disease expert here who also saw Mrs. Burke, was doubtful about her claims.

"I am still not convinced that this woman had or does have chronic Lyme disease," he wrote to staff doctors in the microbiology and immunology department of the Queen Elizabeth II Health Science Centre in Halifax.

A top medical official questioned Dr. Katz's credentials and those of the New Jersey laboratory that analysed her tests, the records show.

Reached at his medical practice in Connecticut, Dr. Katz said this scenario is common.

"I'm used to this," Dr. Katz said in a recent interview. "Anytime something is not falling in line with other peoples' thoughts, the first thing they'll do is attack your credibility. It is ridiculous."

Officials with Capital Health declined comment, citing patient privacy.

But the Burkes have plenty to say about the quality of Kelly Burke's care here.

"We want to wake up some people." said her husband, Larry Burke.

They believe others are sick with Lyme and in some cases have been misdiagnosed.

The graphic designer and artist says she drew a picture of the distinctive bull's-eye rash often exhibited by Lyme sufferers, but it was dismissed.

"I felt like I was on trial when I went to see him," said Mrs. Burke of one doctor she visited.

By the time the diagnosis came from Dr. Katz in Connecticut, she'd exhibited nearly 40 of 44 classic symptoms of Lyme disease, she said. She had tested positive on four separate tests in Connecticut and Dr. Katz clinically evaluated her symptoms.

He later described Mrs. Burke's condition as a textbook case of Lyme.

"The only reason I didn't exhibit all 44 is that I don't have a scrotum," she said, referring to some problems men have with Lyme.

"There was a time when we thought she was going to die," said Mr. Burke.

Back in August 2001, Mrs. Burke was prescribed the antibiotic doxycyclene by Dr. Schlech for Lyme, her medical records show. But she believes he was just appeasing her.

"They are clearly convinced that this is Lyme disease and the placebo effect associated with active treatment should be strong," Dr. Schlech said in an Aug. 27, 2001, letter to Mrs. Burke's GP.

The antibiotic was prescribed for 30 days and her GP extended the treatment. In early February 2002, the GP suspended it: senior physicians didn't believe Mrs. Burke had Lyme. Mrs. Burke said after that, she just got worse.

Since Mr. Burke posted his wife's story on the Canadian Lyme Disease Foundation website, they've taken hundreds of calls, many from sick Nova Scotians. They told him they've run into the same medical walls.

Aside from the physical symptoms, Mrs. Burke said the ordeal has torn her apart emotionally.

She and her husband have initiated legal action against Dr. Schlech, who is travelling and could not be reached for comment. No defence has been filed.

Almost every aspect of Mrs. Burke's life has been affected since the tick bite, she said. One of her two daughters is still terrified about her mother's condition and it has caused a rift among her family members: some believe her, others don't.

Because it was left untreated for so long, she alleges she has lasting neurological damage, ranging from continued severe pain, blurred vision, fatigue, muscle weakness and heart palpitations.

Jim Wilson heads the Canadian Lyme Disease Foundation and says he contracted Lyme disease near his former home at Bell Lake in Dartmouth in 1991. A large number of Canadians are being misdiagnosed with everything from MS to Alzheimers when they might have Lyme, he said.

"You're right on the major flyways from the most endemic region in the world," Mr. Wilson said, referring to the Atlantic region.

"Birds are like airliners for the ticks. The ticks are hosts," said Mr. Wilson, who now lives in Kelowna, B.C.

The first human case of Lyme in Canada was in 1979 near Long Point, Ont.

In 2004, 38 human cases were reported to the Public Health Agency of Canada. Since 1995, there have been 310 cases, with 174 of those recorded as people infected outside the country, the agency said.

To date, the Nova Scotia Health Department says three cases have been recorded here, the first in 2002. The problem area appears focused in Lunenburg County.

In May 1999, the Public Health Agency said a Lyme-positive tick was plucked from a common yellowthroat bird, which migrates to Nova Scotia. It was the first sign of Lyme disease here.

The Burkes, Mr. Wilson, Dr. Katz and NDP Leader Darrell Dexter, who's sought information from the province, say the most accurate Lyme testing isn't being used here. Nor do doctors have enough education about the disease, they said.

Dr. Katz says the front-line test done here picks up only a fraction of Lyme cases. Different tests are used in the U.S. and at the national microbiology lab in Winnipeg, they said.

Nova Scotia only sends samples to that lab if a positive result comes from the initial test.

But Dr. Kevin Forward, with the QEII's infectious diseases and microbiology branch, defended Nova Scotia's test, saying it's "very sensitive." He said there

[artur737]

cd

But Dr. Kevin Forward, with the QEII's infectious diseases and microbiology branch, defended Nova Scotia's test, saying it's "very sensitive." He said there isn't enough volume for the other tests to be done here.

He also criticized Lyme groups for putting forward "unconventional wisdom" that the province's test is inaccurate.

"I do not subscribe to this and think it is more likely that most of these individuals do not have Lyme," he said in an e-mail to The Chronicle Herald.

"In Nova Scotia the chance of having Lyme with a negative screening test and atypical symptoms is very, very remote."

Dr. Forward questioned the credibility of "private for-profit labs" where the other testing is done.

Unlike in the U.S. where more than 21,000 cases are on file, Lyme is not a "notifiable illness" in Canada. Reporting is voluntary.

Notifiable illnesses here are those requiring immediate public alerts, such as forms of meningitis, said Dr. Paul Sockett, with the Public Health Agency. (The agency advocates different tests than those used in Nova Scotia.)

The Burkes said the province failed to act on the national health agency's warning about the bird carrying the Lyme-positive tick back in 1999, the first on a migratory bird in the country.

"These observations serve as an important reminder to the public in general, and physicians in particular, that Lyme disease can be contracted in Canada," the 1999 report said.

The Burkes said despite this, infectious disease and other doctors here didn't consider Lyme the root of her problems. Her medical file shows her GP told her there was no homegrown Lyme disease here.

Health Department spokeswoman Michelle Lucas said the department knew of the 1999 report but didn't act.

"Obviously, we were informed, the experts kind of looked at it but made the decision not to do anything at the time. It was a migratory bird, it wasn't prevalent in Nova Scotia at that time," she said. "They didn't do anything."

A Freedom of Information Act request submitted by the New Democratic Party and provided to The Chronicle Herald shows the province sent a letter about Lyme to doctors some time after June 26, 2003, four years after Mrs. Burke says she was infected.

By 2003, it was clear Lyme-carrying ticks were in Lunenburg County and sites in Antigonish County, where a deer tick tested positive. At least one Lyme-positive tick was found in Halifax County, but provincial experts didn't feel there was an established population.

Ms. Lucas said another doctor's letter went out a year earlier, in August 2002, in addition to an article to the provincial medical society.

The documents show Dr. Robbin Lindsay, with the national microbiology lab, did several tests here in the past few years, noting Lyme-positive ticks would likely expand from their biggest habitat in the Lunenburg County area.

"I personally can imagine that over time these ticks will spread to other suitable habitats," he said in an issue of Tick Tock, a publication issued by the province.

"There's no reason why, based on the kind of habitat, that we shouldn't be seeing this tick elsewhere."

A QEII microbiology report for 2002-03 shows 17 per cent of the 141 ticks collected in Antigonish County were positive for Lyme.

Despite provincial efforts, the Burkes and Mr. Dexter say the public still doesn't know enough about Lyme and neither do doctors.

They say there may be a number of reasons Lyme hasn't become more public in Nova Scotia, from fears over tourism to legal liability and slow-responding government agencies.

Mr. Wilson said many provinces say their Lyme cases were brought in from other places, such as the U.S.

"They're all saying that, . . . every state and every province, so where the heck are all these people getting it from?" said Mr. Wilson. "They're all passing the buck."

Money can't be the reason, they say, because treatment after early diagnosis simply involves rounds of basic antibiotics.

Mrs. Burke says her ordeal has cost taxpayers and her family. The Burkes themselves have spent more than $10,000 US seeking treatment.

Mr. Burke still can't understand the reluctance to pursue Lyme in his wife's case.

"If you went in (to a doctor) with acne, they'd be throwing antibiotics at you like Smarties."

[artur737]

Publikacja z 8 sierpnia 2005

The West Coast solution
N.S. Lyme victims try B.C. expert

By EVA HOARE / Investigative Reporter

A British Columbia doctor says he's treated "double-digit" numbers of Nova Scotians for Lyme disease, perhaps because few doctors understand the illness.

Ernie Murakami, clinical assistant professor at the University of British Columbia, says he has also been at the receiving end of attacks by other doctors for his attempts to publicize information about Lyme disease.

"I have been discredited but I'm not worried about it that much because I want to educate people that much," Dr. Murakami said in a recent interview from his family practice in Hope, B.C.

The doctor, also the medical director of the Fraser health authority and head of emergency at Fraser Canyon Hospital, counts Kelly Burke of Shad Bay and Shaun Burke of New Waterford (no relation to Kelly) among his growing list of Lyme patients.

Dr. Murakami says he's not interested in driving a wedge in the medical profession between those who believe Lyme disease is spreading and those who don't.

"I don't want to alienate them in any way," the doctor said.

"I just know I see people from all over and they're just desperate for help. All the doctors should be aware that we are missing the diagnoses."

He said many Canadians are being diagnosed or tested for a host of other diseases, from MS to obscure syndromes, because the current blood testing for Lyme here misses a vast majority of the cases.

Before his Lyme diagnosis, Shaun Burke, 38, was told by doctors that he had Meneir's disease, (a deterioration of the inner ear), heavy metal toxicity, fibromyalgia, ulnar neuropathy and chronic fatigue syndrome. Marfan's syndrome, a genetic disorder that causes joint problems and heart palpitations, was also tracked as a possibility.

He saw Dr. Murakami in November 2004, four years after his symptoms first appeared.

"Some of the things I can't even remember. It was just getting out of hand," he said in a recent interview.

Mr. Burke also had a distinctive rash, one indicator of Lyme. It appeared on his shoulder and he says although he urged his doctor to consider Lyme disease, the physician wouldn't. (He doesn't remember being bitten by a tick.)

"The neurologist told me the only thing that was wrong with me is I needed a good psychiatrist. There's so much that goes wrong in your body, they figure you're just crazy."

Dr. Murakami said using clinical diagnoses combined with better blood testing would ensure Lyme disease isn't over- or under-diagnosed.

He said lab tests are not the sole indicator.

"As far as I'm concerned . . . if you do it by lab (tests only), you're going to miss 90 per cent of the cases."

Physicians should be on the lookout for healthy, possibly outdoorsy people who have had no previous history of illness that all of a sudden "develop multi-organ failure," he said. "When you have all these systems falling down at the same time, you've got to consider Lyme disease."

In 2004, Mr. Burke said he was so sick he thought he was going to die, so he got his affairs in order. Today, after antibiotic treatment for about eight months, he said he feels about "75 per cent" on the way toward good health.

"Put it this way, I was dead this time last year," Mr. Burke said.

Before he got sick, he worked with special-needs children in Cape Breton but is now unemployed.

Dr. Murakami said treating Lyme, which has become a bit more expensive because it can take more than a standard 30-day treatment of antibiotics, is still cheaper than bouncing patients from specialist to specialist and treatment to treatment.

"Most of these people have seen an average of 10 doctors before I've seen them."

He said he's trying to get the word out to students in medical school, noting that many physicians still don't have a great knowledge of Lyme disease.

Dr. Paul Sockett, with the Public Health Agency of Canada, said in a recent interview that more physicians must be educated about Lyme.

"It's important for physicians who may be seeing a patient for the first time to perhaps to be aware that Lyme disease is an issue," said Dr. Sockett.

Dr. Murakami said it is difficult for doctors because not every Lyme patient exhibits the bull's-eye rash, which is one hallmark of the disease, so its symptoms can be mistaken for other ailments.

"You may not even develop a rash . . . only about 35 per cent of the people develop a rash."

Mr. Burke says the medical establishment has to stop deriding doctors who are more open to Lyme diagnoses.

"This guy (Murakami) actually gave me my life back and never took a cent from me."

[artur737]

Chronicle Herald of Halifax 10 sierpnia 2005

'Mommy, I feel awful'
Boy's parents want to know why they had to fight to get Lyme
test done
By EVA HOARE / Investigative Reporter / Special Report

Jesse Watton turned three last Sunday.

But he struggled to have fun at his birthday party, too
listless to play with his friends.

"Mommy, I feel awful," he told his mother Tanja Zaedow while
the other children were getting ready to take a dip in the pool
of the family home in Aylesford, Kings County.

"It just breaks your heart. Every day I'm seeing different
things wrong with him."

Jesse has pains in his back, arms, head and stomach and a
constant low-grade fever. He's up about 10 times a night with
various aches, says Ms. Zaedow.

And at his young age, he's had more tests than most adults,
including risky and invasive procedures that would terrify most
older people. They include a liver biopsy, spinal tap, a bone
marrow test and major blood work.

But none of the tests could find what was really wrong with
Jesse because initially at least one of his doctors wouldn't
consider Lyme disease, say Ms. Zaedow and his father Dave
Watton.

A tick bit Jesse on the top of the head at the end of April
while he was playing at his aunt's house in Mount Hanley,
Annapolis County.

His mother found the tick, which was "so tiny," lodged in his
hair while bathing him a couple of days later.

Soon after, Jesse started having health troubles.

The family doctor in nearby Kingston sent him to the hospital
in Middleton. An appointment was immediately set up with a
liver specialist after Jesse had a bowel movement that was
completely white - a possible sign of liver problems.

Since Ms. Zaedow has had a history of liver-related illness,
she didn't mind the liver test, saying she just wanted to find
out what was wrong with her son.

On June 2, Jesse was admitted to the IWK Health Centre in
Halifax, where he had a series of tests, including a liver
biopsy and ultrasounds on his hip and stomach. There were more
tests for hepatitis and mononucleosis, his parents said.

One IWK doctor didn't seem interested in their story of the
tick or their suggestions about Lyme disease, they recall.

"We told the same specialists the same story every time," Mr.
Watton said in an interview in the couple's backyard Tuesday.

"That was the first thing we told them, every one of them. It
went right over top of them," Mr. Watton said, referring to the
Lyme disease issue.

After nearly 10 days in hospital and numerous tests, someone
did listen, and almost a month later, on July 15, Jesse was
tested for Lyme.

The test came back positive, and now Jesse is on antibiotics.

But his parents are frustrated and upset that it took weeks for
the simple test to be given.

"If they would have tested (early on), it would have been at
the early stage of the disease," said Mr. Watton, a 33-year-old
contractor.

By late July, Jesse had also been tested for leukemia and
tuberculosis. "It would have showed up in the blood work," Ms.
Zaedow said of Lyme.

"He's terrified of (doctors) now," she added.

Jesse still doesn't feel much better, despite two weeks of a
proposed 30-day period of antibiotics, and his parents are
frustrated they haven't heard much from any of the many doctors
they've seen since May.

They want other parents and their children not to have to
endure the nightmare they have since April.

"They should be warning the public about this," Ms. Zaedow said
of health authorities. "They want you to put sunscreen on your
kids all the time."

She worries Jesse's condition might not improve for some time
because of the delayed diagnosis.

"I put my faith in the doctors," said Ms. Zaedow, adding she's
not out to get any doctor in trouble, but wants Jesse's story
to serve as a cautionary tale.

Jessie is far from being back to a normal boy again.

He told his mother the other day, "The bones in my head hurt,"
she recalled. Not too long ago, while at day care, he fell
asleep at his table during lunch. He didn't wake up for four
hours.

The once-ravenous eater hasn't actually eaten anything for more
than eight weeks. He's on a liquid food supplement that ensures
he'll get the proper nutrients.

His mother, feeling so badly for her son, also gives him candy
sometimes when he asks, because it's the only thing he seems to
have a taste for.

Ironically, before all this happened, his parents called him
Bug Boy because Jesse loved to collect every kind of bug.

His father worries he'll be plagued by Lyme-related problems
for some time to come.

"That rattles me."

Publikacja z Globe and Mail - Kanada

[artur737]

Publikacja jest wynikiem wysilku Canadian Lyme Disease Foundation.
Chyba po raz pierwszy zadebiutowal lekarz leczacy borelioze z Toronto Dr. Bagdadlian.
To wlasnie od niego zapozyczylem metode leczenia Amoxycylina 12 g dziennie. On wlasnie tak leczy borelioze od ponad dziesieciu lat.
Obecnie to ujawniam skoro ow doktor zdecydowal sie zostac osoba publiczna.

A teraz juz artykul.

Ticking bomb?

By SUSAN BOURETTE

Saturday, August 20, 2005 Updated at 11:42 AM EDT

From Saturday's Globe and Mail


I lay on the emergency table, my left breast prepped for microsurgery. The resident peered at the underside of my bosom to examine the creature clamped in the middle of a dark and angry rash. The spider-like bug had been there for at least three days, having hitched a ride all the way from the grassy marshes of Prince Edward Island, where I had spent an afternoon in hip waders and bulrushes.

"I've seen hundreds of ticks," the doctor assured me, his scalpel flashing under the hospital lights as he slashed into my breast to dislodge the bug. "I've picked them off myself up north.

"It's not a tick," he continued, gluing my skin back together. "So don't worry."

Three years later, I wasn't worried — I was panic-stricken. A strange illness had begun to assault me. My body felt like a powder keg. My skin was on fire. I was dizzy and had chest pains. My muscles twitched, and I had trouble keeping my balance when I walked.
I shuffled from doctor to doctor, desperately trying to convince someone that the symptoms were not something a prescription for anxiety pills would heal. I was tested for HIV, syphilis, West Nile; nothing showed up. I was finally told I most likely had two autoimmune diseases — that I was in the early stages of both multiple sclerosis and lupus.

My own layperson's investigation suggested a more plausible explanation: Lyme disease, tracing back to that bite three years before.

What I could never have imagined as I set out to seek treatment was that I had stepped into the middle of one of medicine's most vengeful clashes — a war that not only pits patient against doctor, but also physician against physician. Patients' lives are in the balance as U.S. doctors lose their licences, casting a chill over the entire North American medical community.

This war has claimed hundreds of thousands of Americans, and many more who go undiagnosed and untreated — not only victims whose lives are diminished, but also many who are in wheelchairs or bedridden.

Many Canadian doctors and medical institutions are like conscientious objectors, not only retreating from the battle but also seemingly denying its existence. I encountered outright hostility to the possibility that I could have been infected by a tick bite in Canada.

Lyme disease is an acknowledged epidemic in the United States. There are hundreds of thousands of Lyme patients, most of them in states next to the Canadian border. Last year, there were more than 21,000 reported cases of Lyme disease in the United States, but the Centers for Disease Control believes that the number is actually 10 times greater. The number of Americans infected with Lyme disease over the past 30 years could be as high as three million.

Daryl Hall of Hall & Oates recently cancelled a tour because he was too sick with Lyme disease to travel. He is just one among a star-studded cast of victims that also includes best-selling authors Rebecca Wells and Amy Tan. By the time she was diagnosed, several years after she first became ill, Ms. Tan was hallucinating. She has recently joined the groundswell of increasingly rancorous patient-advocate groups south of the border.

The CDC's map shows areas of widespread Lyme infestation all along the eastern seaboard. But here in Canada, ticks, which are carried by songbirds and mice, apparently need a passport.

[artur737]

"It's here in minute cases, confined to a relatively small number of areas," says Paul Sockett, who heads the Health Canada department that oversees diseases that pass between animals and humans. He argues that the endemic areas in the United States may be located in the middle of those states, so the ticks wouldn't make it as far as the Canadian border.

But Ernie Murakami, in Hope, B.C., says his own caseload shows the official statistics are deeply flawed. Dr. Murakami, known among advocacy groups as one of a handful of "Lyme-literate" doctors here, says he has treated 1,000 Canadians for the disease, from Halifax to his home province. He has counselled another 1,000 patients and their doctors by telephone.

Dr. Murakami says Canada is on the cusp of its own epidemic. "It's atrocious just how many cases are being missed by doctors," he says. "People's lives are being ruined. They're completely disabled when all they needed was antibiotics."

Many people go years without a proper diagnosis. They lose their health, their jobs, their homes and sometimes friends and family who have trouble comprehending just how debilitating the disease can be. I was much luckier than most, because I began antibiotic treatment seven months after my first symptoms appeared. But even I was already too ill to work.
In the doctors' defence, Lyme can be a difficult disease to diagnose. It is dubbed "the great imitator" because it mimics so many other diseases. People with Lyme disease are most commonly misdiagnosed with everything from arthritis to fibromyalgia, chronic fatigue syndrome, arthritis, multiple sclerosis, Lou Gehrig's disease, Parkinson's, Alzheimer's and bipolar disorder, to name a few.

While German researchers first recognized the bacterium more than a century ago, it wasn't until a group of mothers in Lyme, Conn., noticed that their children had all been suddenly diagnosed with juvenile arthritis that researchers began to search for the culprit. Lyme disease has now been reported in 50 U.S. states, but is also on the upswing in China, Europe, Japan, Australia and the former Soviet Union.

The name of the bacterium is Borrelia burgdorferi. It's spread by deer ticks — often no bigger than a poppy seed — when they clamp on to the skin, feeding on the host's blood while allowing the bacterium to invade the body.

The organism moves better through tissue than in blood, eventually embedding itself in the central nervous system, heart, brain, liver, spleen and joints, causing everything from mild pain to dizziness and paralysis. Often the first sign of Lyme disease is a bull's-eye rash. If recognized early enough, the disease is easily stopped in its tracks with a few weeks of low-dose antibiotics.
Health Canada's numbers do make it seem that Canadians have little reason to worry. There have been 310 reported cases of Lyme disease in Canada since 1994, mainly in Ontario and B.C., and more than half reportedly caused by tick bites outside the country. But those numbers do not include the growing army of people like myself, who got their positive tests at specialized U.S. labs.

And Dr. Sockett's view is not shared by everyone at the federal health agency. Robbin Lindsay, a Health Canada research scientist, says the organization is aware of several areas infested with Lyme-carrying ticks, including Lunenburg, N.S., and Rondeau Park, Presqu'ile, Point Pelee and Long Point in Ontario. Much of British Columbia, Dr. Lindsay says, is also rife with Lyme-infected ticks. In reality, she warns: "You can acquire a tick that is infected pretty much anywhere in Canada."

[artur737]

Jim Wilson of Westbank, B.C., has witnessed the toll of Lyme disease within his own family and across the country. He was infected with the bacteria in Nova Scotia in the early 1990s, but it wasn't until his own daughter become ill a decade later in B.C. that he realized the extent of the problem in this country.

He founded the charitable Canadian Lyme Disease Foundation two years ago to give a national voice to the disparate patient groups in various provinces. He says he receives dozens of e-mail messages a day from people trying to find help.

"Let's just admit that we're missing something very big here," Mr. Wilson says, adding that his website gets more than 40,000 hits a day. "I just got a call from a reporter up in Gander, Nfld., wanting to know what's going on, because so many people believe they've got Lyme. It's everywhere but it's nowhere, according to Health Canada."

Because of the lack of acknowledgment from the government, Lyme disease isn't even on the radar of most doctors, contributing to the misdiagnosis and debilitation of hundreds of Canadians, according to Mr. Wilson's lowest estimates.

In my own case, by the time I ended up in the office of Jay Keystone, one of Canada's top infectious-disease doctors, I had already seen about 20 doctors. It was early spring and Dr. Keystone carefully reviewed my file before telling me that he didn't believe it was Lyme disease that was making me ill — too long between the bite and the manifestation of the disease, he said.

He agreed that my symptoms were consistent with Lyme disease, and that it probably had been a tick bite I had three years ago. But my illness was more likely caused by stress, he explained. "Lyme disease is the most overdiagnosed disease in North America," he continued. "Even if you did test positive on a Lyme disease test, I would test you again and again and again." He said he didn't want to treat me for a disease I didn't have, and tests can produce false positives.

I was stunned. What cancer or heart-disease patient, I thought to myself, has to prove their illness over and over and over again to get treatment? I left his office in tears, believing that no one in Canada was ever going to be willing to treat me. A few weeks later, however, I found a doctor — after obtaining a positive test from a California lab.

"If someone's living in downtown Toronto, the chances of them having Lyme disease are incredibly low," Dr. Keystone explains now. "If we tested every patient who comes in with symptoms like you had, we would have huge numbers of people with false positive tests. ..... I'm not a Lyme expert, but as far as we can tell, there's very little Lyme disease in Ontario."

It may seem astounding that doctors who devote their lives to healing the sick would willingly turn patients away at the door. But the medical controversy over both the diagnosis and treatment of Lyme disease has created a difficult climate for patients and doctors alike.

Over the past few years, more than 50 physicians in states such as New York, Connecticut and Michigan have faced lengthy investigations costing hundreds of thousands of dollars for administering long-term antibiotics to Lyme-disease patients. Many have been disciplined and some have lost their licences, creating a climate in which many doctors are reluctant to take on Lyme patients.

The most acrimonious debate is over one question: How much antibiotic therapy is enough?
On one side is a group of scientists and front-line physicians who believe that the symptoms of Lyme disease are diverse and defy easy diagnosis and treatment. If not caught in the initial phase, when both sides agree the disease is highly curable, patients will require months, if not years, of antibiotic therapy. If patients are still symptomatic after six weeks of antibiotics, these doctors believe they haven't been treated long enough.

On the other side are the majority of infectious-disease researchers who develop drugs, receive research grants and often advise insurance companies. They believe that Lyme disease is easy to diagnose and cure. If the patient doesn't fully recover after three to six weeks of antibiotics, the patient is suffering from the aftershocks of the disease, they maintain, and further antibiotic therapy is pointless.

They believe that lingering symptoms are caused by an autoimmune response triggered by the initial infection. And they warn that long-term antibiotic treatment can cause side effects such as allergies, colitis, gallstones and liver damage, and risks creating drug-resistant superbugs.

Both sides have scores of studies supporting their opinions. As a result, many physicians are either ill informed or simply unwilling to treat patients, says Pat Smith, founder of the U.S. National Lyme Disease Association, based in New Jersey.

"Lyme-disease patients are the lepers of the 21st century," Ms. Smith declares. She says she has referred dozens of Canadians who can't find treatment here to physicians in the United States. "No one wants to treat them. Sometimes it is just ignorance, and sometimes it's that doctors are pleading ignorance because it's just much simpler not to get involved."

[artur737]

Maureen McShane has been on both sides of the divide. Dr. McShane lives in Montreal, but practises in Chazy, N.Y. She was bitten by a tick in the Laurentians two years ago. By the time she finally figured out for herself what she had, she had already seen scores of doctors in Montreal — from neurologists to a rheumatologist, who said her symptoms were caused by early-stage menopause.

She admits that, before her own diagnosis, she didn't know much about the disease or the controversy. "Honestly, it's not that I was a bad doctor, but I didn't recognize the signs of Lyme disease myself," she says. "When I did hear about Lyme disease, I thought to myself, 'If only they'd get regular exercise and eat well, they'd get better.' I had no idea what these people were going through."

It took two years of antibiotics before she began to feel well again.

Dr. McShane says she understands that doctors are in a difficult position. "They know that if they prescribe long-term antibiotics, they run the risk of losing their reputations and their licences."

Critics charge that the medical boards in many U.S. states have taken sides inappropriately in an argument that should be fought in journals and at medical conferences. It is, they claim, the insurance companies — which have huge stakes in the outcome of the battle because they don't want to pick up the tab for expensive long-term therapy — that are responsible for driving the Lyme-disease agenda.

New York state assemblyman Joel Miller at first dismissed such complaints from his constituents. "But when I began to investigate it for myself, I found that most of the complaints against doctors were filed by insurance companies," he says. "It's a travesty that we've fought years to try to correct."

Mr. Miller is one of a handful of legislators in his state responsible for helping recently to overhaul the laws, allowing physicians the freedom to treat Lyme disease in the manner they feel is most effective, without the threat of investigation by medical overseers.
Although doctors in Canada have yet to face such scrutiny, some who are treating Lyme disease with long-term therapy have expressed concern that they, too, will be hauled before their medical boards.

The other major concern is that testing is still so inaccurate. Even the U.S. Centers for Disease Control advises doctors to use the tests only to support a diagnosis based on patient symptoms. Health Canada says it has no idea how precise the tests are. Some doctors believe that the tests miss 40 to 60 per cent of true Lyme cases.

One of them was Joan McComas, a 56-year-old tenured professor who lives in Ottawa. Like many Lyme patients, she does not recall being bitten or developing a rash, but she had been camping near Thunder Bay in the summer of 2000 before she came down with a flu she couldn't shake. Over six months, her list of maladies began to multiply — crushing fatigue, trouble with her balance, odd smells like mothballs and dishwater detergent. The doctors were mystified. Maybe it was a brain tumour.

Two years later, she had lost control of her body, her limbs jerking violently every few seconds. Four years later, she was falling backward and sideways, and struggling to walk with two canes. "I could deal with that," Ms. McComas says. "What I couldn't deal with was that I was losing my ability to think. ..... I was having trouble finding the right words. I couldn't even recognize the faces of people I knew."
Then came a new diagnosis, of an extremely rare, degenerative disease. The doctor told her that she had a few years to live, and she prepared herself. A few months later, her doctor told her that she wasn't going downhill fast enough. Her illness, he said, was all in her head.

One spring weekend at an Ottawa drugstore, she described her symptoms to a pharmacist. "Did you consider the possibility of Lyme disease?" he asked. She had been tested. A negative test in Ontario didn't mean much, he told her. The tests produce both false positives and false negatives.

My own doctor, infectious-disease specialist Hovsep Baghdadlian, says that of the 125 people he is currently treating for Lyme disease, only 10 per cent tested positive on Ontario tests. Like me, many doctors treating Lyme disease have turned to specialized labs in the U.S. But some Canadian doctors are loath to recognize foreign tests.

When Ms. McComas received a positive test from a California lab, her infectious-diseases doctor in Ottawa refused to recognize her test results or treat her. Feeling she had no choice, she headed to New York, spending $12,000 on medical treatment. After a year of both oral and IV antibiotics, she says she's more than 90 per cent better.

Should doctors prescribe antibiotics when they aren't 100 per cent certain that the patient has Lyme disease? Jim Wilson, for one, is unequivocal: The devastating consequences of physical, cognitive and functional disability associated with Lyme disease far outweigh the risks of antibiotic therapy.

[artur737]

For its part, Health Canada says it is working hard on Lyme disease. It is conducting annual surveys to identify endemic areas, and has recently committed $800,000 in research funds to the disease. The agency's Paul Sockett says there is a proposal on the table to meet with the provinces this year to discuss Lyme disease.

But Mr. Wilson says it's not enough: "We are years behind in all of this. They have done absolutely nothing in terms of advising people of the seriousness of what's in their backyards."

As for me, five months and a truckload of antibiotics later, the bacterium that invaded my body appears to be receding. My worst symptoms are now long gone. Still, soap won't wash away the medicinal smell that permeates my skin. My teeth are yellow from all the antibiotics. Dr. Baghdadlian tells me that the stain will go away as soon as I stop taking the pills.

"When?" I ask him. He shrugs and sighs. Maybe a few more months. Maybe many more.

Still, I am lucky. I found a doctor willing to do what many doctors would not. I am getting better. Slowly.

It's horrifying to have a disease wrest control of your body. It's just as terrifying to struggle in vain to convince doctors of the seriousness of your condition — or even its existence. I managed to do both, but the most frightening thing of all is that many victims of Lyme disease have failed on both counts.

Susan Bourette, a Toronto writer, has won several awards for her investigative journalism.

Borelioza jest choroba mozgu

[artur737]

August 24, 2005

LYME IS A BRAIN DISEASE (neuroborreliosis)

By Virginia T. Sherr 7-31-05

Lyme borreliosis is a brain disease as well as a multisystemic disease caused by spirochetal bacteria.* Quite frankly, it is an infection that has been burdened with a thousand inaccurate medical diagnoses. The manner in which the current pandemic of tertiary Lyme disease, neuroborreliosis, has usually been handled-

It came from beneath the lawn chair

[artur737]

IT CAME FROM BENEATH THE LAWN CHAIR
IF YOU THINK YOU'RE SAFE FROM LYME DISEASE IN YOUR OWN BACK YARD, THINK AGAIN

By Sharon Bloyd-Peshkin. Sharon Bloyd-Peshkin directs the magazine program at Columbia College Chicago
Published August 21, 2005


It started innocently enough. Monday morning, after a campfire with my 10-year-old son in the back yard the night before, I awoke with a painful spot behind my ear. "It looks like a bite," my husband told me.

The next day the glands in my neck were slightly swollen, and a day later they had become the size of a small marble. By Thursday, my earlobe was red, warm and swollen. I peered behind it with a mirror. Sure enough, it was a bite. Spider? Perhaps. Fortunately the most dangerous biting spiders in Illinois are the black widow and the brown recluse, and my symptoms-or rather, my lack of them-didn't suggest either one.

By Friday afternoon my earlobe was so large and tight I thought it was going to split. By now I was driving to a kayaking symposium in Michigan, so I called my physician and described my ear. We decided it was likely an allergic reaction to the bite that could be contained with prednisone, a corticosteroid, so I stopped at a pharmacy and picked up a prescription.

Over the next couple of days, my earlobe deflated a bit, but the glands in my neck grew into an angry knot. One evening I felt feverish and exhausted, but I was fine the next morning. Peculiar, I thought, but not worrisome.

Then the rash appeared-or what I would later come to recognize as the rash. The area about three inches around my ear was pink, and I had an odd red streak from my temple down my cheek all the way under my jaw. Some outdoorsy people at the symposium suggested Lyme disease. I began to wonder too.

I had heard of Lyme, the disease named for the town of Old Lyme, Conn., where in 1975 a peculiar outbreak of what appeared to be juvenile arthritis turned out to be the later stages of an illness caused by a tick-borne bacterium, Borrelia burgdorferi. I knew that it caused a bull's-eye rash and light flu symptoms at first, and that left untreated, it could cause chronic arthritis, cardiac problems and neurological symptoms.

But I also knew-or thought I knew-that Lyme disease wasn't a concern in Illinois. Even though there were 23,763 cases of Lyme disease reported to the U.S. Centers for Disease Control and Prevention in 2002-the last year for which statistics are posted on the CDC Web site-95 percent were in the northeast (Connecticut, Delaware, Rhode Island, Maine, Maryland, Massachusetts, New Jersey, New Hampshire, Pennsylvania and New York) or the upper Midwest (Minnestota and Wisconsin). Illinois had only 47 cases that year-fewer cases of Lyme than of malaria.

Had I just won the infectious-disease equivalent of the lottery?

In fact, Lyme disease is on the rise in Illinois. In 2000, there were 35 cases reported statewide, according to the Illinois Department of Public Health. By 2003, there were 71 cases, and in 2004, 87 cases. But these numbers probably give a false picture of the true incidence of the illness because it's widely accepted that many cases of Lyme disease go unreported.

"All diseases are underreported," says Dr. Paul Mead, a medical epidemiologist with the division of vector-borne infectious diseases at the Centers for Disease Control in Fort Collins, Colo. "Surveillance for any disease captures only a portion of that disease. The estimates of underreporting of Lyme disease have been as high as 1 in 10 or maybe 1 in 4."

Mark Schmidt, former deputy director of the Illinois Department of Public Health, was involved in efforts that began in 2000 to determine the extent to which Lyme disease goes underreported in this state. "None of us knew much about the disease at that time," he says. "The total number of cases amounted to from less than 10 to less than 20 per year, so it wasn't anything that was very much on our radar."

Schmidt and his colleagues analyzed the illness reports that had not been included in the official statistics during one year, a process that involved calling physicians for more information. "We concluded that Illinois probably had 80 to 100 cases per year on which we had hard-copy reports," he says.

Not all of those tick bites occurred in Illinois, of course. Wisconsin, where many Illinois residents vacation, has a much higher incidence of Lyme disease. "But it was unreasonable to think that Wisconsin has more than 400 cases per year, and . . . Illinois has only 10 cases per year," Schmidt says.

Subsequent studies have verified Schmidt's observation. Attempts to identify the locations where Illinois residents were bitten suggest that the incidence of homegrown Lyme disease is genuinely on the rise. In August 2004, the Illinois Department of Public Health reported that the black-legged ticks (also known as deer ticks) that are responsible for transmitting Borrelia to humans were "established"--that is, at least six of the ticks had been found in two of its three life stages-in Piatt, Vermillion, Clark and Kankakee counties, as well as along parts of the Illinois and Kankakee rivers. The ticks had already been established in JoDaviess and Ogle counties in the northwest corner of the state for more than a decade.

More recently, in June 2005, a survey by the DuPage County Health Department and state public health officials found black-legged ticks on public and private property in DuPage County. One of the captured ticks was found to be infected with Borrelia.

But no cases of exposure had ever been reported in Oak Park, where I live. I asked Dr. Maria Picken, a pathology professor at Loyola University Medical Center in Maywood who has studied Borrelia in northern Illinois, if she was shocked that I had caught the disease in my own back yard.

"No, not at all," she replied.

"We conducted studies a few years ago and showed how the Midwestern focus is expanding," Picken says. "We've been predicting this."

But with little funding for research on the prevalence of the black-legged tick and Borrelia in Illinois, Picken, who also specializes in kidney diseases, is no longer able to devote her professional time to the subject. "Unfortunately, there was not enough interest in supporting this type of research, so we are not doing it full time," she says. "It's more of a hobby at this point."

The Illinois Department of Public Health is also operating without funding in its efforts to evaluate the risk of Lyme disease in the state. In April, the department presented an assessment of its efforts to the CDC. The report's title: "Preventing Tick-Borne Diseases ('On a Shoestring')."

[artur737]

BECAUSE IT LACKS financial resources, the IDPH concentrates on partnerships with forest preserve districts, health departments and entomologists instead of conducting tick research of its own.

This puts the forest preserve districts in a difficult position. "Let's say you're a typical forest preserve commissioner," says Richard E. Warner, a professor of wildlife ecology at the University of Illinois at Urbana-Champaign. "Do you stand up and become a clarion, with the possibility that it will cause a different recreational pattern by your clients? With minimal evidence, why should they raise hell about this and cause people to panic and change their use of the site?

"Few people would disagree that Lyme disease is becoming more common in this area. I don't want to sound alarmist, but I think the risk is significant," says Warner.

On Tuesday evening, nine days after the bite, I paid a visit to my doctor. Although she had seen only one case of Lyme in the past, she immediately suspected it was the cause of my rash. The line on my face, she explained, appeared to be the edge of the classic bull's-eye rash I had heard about. Called erythema migrans, which means "spreading redness," it is a gradually expanding circle around the bite that grows over the course of several days.

This rash is regarded by the Centers for Disease Control and the Illinois Department of Public Health as solid evidence of Lyme disease, so my doctor immediately started me on doxycycline, an antibiotic that is highly effective against Lyme disease when administered shortly after infection. She also drew blood to confirm the diagnosis, because it seemed so unlikely that I had contracted Lyme disease in Illinois.

I SOON LEARNED what a rat's nest this disease is. The first test, ELISA (enzyme-linked immunosorbent assay), would not detect the presence of Borrelia; it would only determine if my immune system had mounted an attack against the microbe.

ELISA produces a high percentage of false negatives, especially when taken shortly after infection, before a person is likely to have a sufficient antibody response. It also has false positives, so the lab also planned to follow up with the Western Blot test, which is used to confirm a positive ELISA reading. This test, too, might not yield a positive in the early stages of infection.

My physician explained to me that I was likely to need follow-up testing weeks later to obtain a conclusive diagnosis of Lyme disease, but that waiting for conclusive results could mean failing to treat the infection while it was still relatively easy to cure. And, she noted, if I turned out not to have Lyme, it seemed likely that I had another infection that would respond to the antibiotic.

The effects were dramatic. Within 24 hours, the swelling had gone way down. Within 48 hours, my neck was no longer swollen and painful. Within 72 hours, my doctor called to say that both the ELISA and Western Blot tests had come back positive.

At first I was elated; I knew what I had and I was treating it early enough to head off the potential long-term effects of the disease.

Left untreated, the consequences of Lyme disease can be quite serious. After the initial rash and light flu symptoms that I had experienced-the phase called "early localized Lyme disease"-all symptoms disappear. Then weeks or months later, during what is called "early disseminated Lyme disease," more serious symptoms can emerge, including facial palsy, meningitis, heart arrhythmia and unexplained joint pain. Several months later, the disease can reach the "late disseminated phase." At this point, it can trigger arthritis, severe headaches, encephalitis, memory loss and personality changes.

Not everybody who is infected will get a full-blown illness. "Some people will fight off the infection," the CDC's Mead says. "Other people don't fare as well and the disease will spread to other areas and cause other manifestations. It's a spectrum." But given the severity of the illness when it does progress to the ultimate phase, it's not a risk you'd want to take.

The problem is, many people miss the initial symptoms. Few people, for example, see the tick that bit them. "Some sizable fraction-perhaps half of all people diagnosed and proven to have Lyme disease-never see the tick," says Warner.

That's because during the nymph stage, when black-legged ticks bite people, they are about the size of a poppy seed. "The nymph stage is rather small and is difficult to notice," says Loyola's Picken. "Many people are unaware they have been bitten."

The characteristic rash, meanwhile, appears in only about half the cases, and even then it is easy for someone to miss. "If they are bitten on the head, foot or back, they may not notice the redness," Picken says. "Seeing the presence of the rash on people with dark skin is difficult. Unless you are prepared to examine your skin in good light, you may easily miss the rash."

The early flu symptoms can easily be ignored too. You feel a little ill, and then you feel better. Why would you bring this to a doctor's attention?

By the time the more serious symptoms emerge, the bite is likely to have been forgotten. Without the connection to a tick bite, such symptoms can easily be mistaken for signs of other diseases, such as multiple sclerosis or fibromyalgia. At this point, effective treatment is difficult and the prognosis for full recovery uncertain.

Borrelia burgdorferi, it turns out, is a very squirrely pathogen. It's a spirochete-the same type of bacterium that causes syphilis. After it enters the human blood stream, it quickly infiltrates the central nervous system and, eventually, the brain.

There's a hot debate about what happens in the long run. Some scientists believe that Borrelia changes form, which allows it to evade the body's defenses, causing a chronic infection that can be resolved only through the use of long-term antibiotic treatment. Others believe that the infection eventually clears up and the long-term symptoms are not caused by the original infection, but by the body's response to it and that antibiotics are useless.

"I think reasonable professionals can reasonably disagree," the IDPH's Schmidt says.

[artur737]

As if this weren't enough, black-legged ticks that are infected with Borrelia can also carry other bacteria. The most common are those that cause ehrlichiosis and babesiosis, diseases of the blood cells, and cat-scratch fever, which affects the lymph nodes. The treatment for Lyme disease will not necessarily be successful for these illnesses.

ONLY AT THIS POINT did I start wondering about the tick that caused all this trouble. How had it found me?

The night it bit me, I had been in my back yard with my son. My 13-year-old daughter and husband had been paddling on the Vermillion River near Starved Rock State Park. It wasn't out of the question that they had brought the tick home. But if so, it had survived the shower my husband had taken, had come to bed with him, and then had crawled off him to bite me instead. Not impossible, certainly, but darned unlikely.

"As an entomologist, I never underestimate the ability of an arthropod to do odd things," says Dr. Linn David Haramis, an entomologist with the division of environmental health at the Illinois Department of Public Health. "Certainly in science, unlikely things happen."

It seems to me most probable that the tick had been hiding out in my back yard. But if so, how did it get there?

Black-legged ticks are often transported by deer, which I thought I could rule out until I spoke with John Hayley, supervisor of Oak Park Animal Control. "We have had sightings over the years of deer in the village," he told me. "As early as two weeks ago, there was one prancing around Maple Park." Maple Park is about half a mile from my home.

I asked him if he would be surprised to find one in a tiny back yard like mine. "Not at all," he replied. "It's often seen."

But deer aren't the only animals that can transport the ticks. "It's probably more likely to have been transported by some other mechanism: a migrating bird, a neighbor's dog, or some object your husband brought back from LaSalle County," says Haramis.

Moreover, deer only transport ticks, not Borrelia. "What most people have concluded is that while deer can be very important for moving ticks around, it's often the small mammal population that becomes the reservoir [for the bacteria]," explains the U of I's Warner. "There have been well over 100 species of vertebrates that have been found to be moving Borrelia burgdorferi around."

Black-legged ticks have a two-year life cycle. Adult ticks feed and mate on deer in the fall. The females drop off and lay their eggs on the ground. In the summer, the eggs hatch into larvae, who go looking for a blood meal, which they find courtesy of small mammals or birds. If the animal hosts are infected with Borrelia, the ticks become infected at this point. The following spring, the larvae become nymphs and again go looking for a blood meal. If they carry the bacteria, their hosts-human or small mammal-will be infected by their bite. By fall, the ticks reach the adult stage and turn to deer to find both a meal and a mate.

"The larvae tend to want to feed on small rodents," Haramis explains. "But the nymphs have a wide host preference. They will feed on almost any animal they can get onto. The adults tend to feed on deer because that's where the adult ticks get together for mating."

So let's say a hungry, infected nymph was hanging out in my back yard, seeking a blood meal. I happened to brush by the spot where it was perched. It sensed my warmth and the carbon dioxide that I was exhaling, and eagerly climbed aboard. Then it crawled around looking for a moist spot on which to settle in and begin its banquet.

Here, too, reasonable scientists disagree about how likely it is that an infected tick will transmit Borrelia to a human. The CDC and IDPH say that if the tick is removed before it becomes engorged, the chances of transmission are slim to none. "Ticks have to set up a feeding tube," Haramis explains. "They insert their mouthparts and actually glue themselves to the host." This process is said to take at least 24 hours, though that figure is disputed. In any case, it's at that point that the tick begins an exchange of fluids and possibly causes infection.

A report published in the February 2001 Journal of Infectious Diseases supports the claim that 24 hours must elapse before infection can occur. Infected ticks were placed on mice and removed every 24 hours so the mice could be tested for illness. After 24 hours of attachment, none of the mice were infected. After 48 hours, only a few were infected. But after 48 hours, most of the mice had the rodent equivalent of Lyme disease.

Warner's experience, however, suggests that Borrelia can be transmitted much more quickly than that. "I'm cautious about the dogma, such as the claim that ticks won't transmit the disease if removed within 48 or so hours," he says. "My son Christopher went fishing and came back with a tick bite. He was coming down with symptoms within 24 hours."

My experience, too, is at odds with the journal report. I was apparently bitten after 6 p.m. on a Sunday. (I had not been out of my downtown office or outside the house, to speak of, all week. I certainly had not been anywhere that ticks frequent). When my husband looked behind my ear on Monday morning, the tick was gone, yet I was infected.

"You must be very unlucky," Yasmin Cavenaugh, a public health nurse at the Oak Park Health Department, told me.

FOR WARNER, being unlucky is putting it mildly-but also beside the point. Two of his four children have had Lyme disease. His daughter, who contracted the disease 8 years ago and went undiagnosed and thus untreated for a year and a half. "Her main symptom, neuropathy of the legs, hasn't gone away," he says.

His son, who was bitten five years ago and was promptly treated, is fine.

Warner is still frustrated by how difficult it was to convince his daughter's physicians that they should test her for Lyme Disease, and he places much of the blame on the poor quality of information that Illinois physicians receive.

[artur737]

"The thing that unnerved us," he says, "is the oversimplification that the medical community gets on the disease. When we raised the possibility of Lyme disease, they immediately dismissed it saying, 'Lyme disease is not in Illinois.' "

Warner is also troubled by the reassuring language on the CDC's Web site. The site declares that the people most at risk for Lyme disease are those who live "in endemic areas [and] who frequent sites where infected ticks are common, such as grassy or wooded locations favored by white-tailed deer in the Northeastern and upper Midwest states, and along the northern Pacific coast of California." It also asserts that transmission of Borrelia is unlikely to occur if a tick is removed from the skin within 36 hours of infestation.

"I liken this to a World War II image," Warner says. "There is a huge difference between saying, 'There is no sub in the harbor,' and saying, 'We didn't find a sub in the harbor but you need to be careful.' "

Crafting the right message is a quandary for public health officials, however. "Trying to communicate complex subjects in public health is difficult," Haramis says. The result oftentimes is advice that Warner and others find overly reassuring.

"I'm amazed at how dependent people are on the message when they go to the CDC site," Warner says. "It's the gospel."

MEANWHILE, THE landscape continues to change. "Things aren't static in nature, and we've seen a slow but steady increase in the number of ticks in some areas," Haramis says. "It's a complex system."

Adding to the complexity is Illinois' newest tick-borne disease: STARI, which stands for Southern Tick-Associated Rash Illness. It mimics Lyme disease and is carried by the lone star tick," Haramis says. The lone star tick will aggressively bite people in all three stages of its life, according to the CDC.

STARI emerged in 2001 and promises to make the reporting process for Lyme disease that much trickier. That's because its initial symptom, erythema migrans, is identical to the one that characterizes Lyme disease, it has no serological test of its own yet, and it can be successfully treated with the same antibiotics used to treat Lyme disease. But it is not believed to have Lyme's long-term health consequences.

"Certainly there's no question that STARI complicates the issue of surveillance for Lyme disease," the CDC's Mead says. "The truth is, though, there is a challenge for surveillance in many diseases."

I have just finished a month on antibiotics. As I nurse the second-degree burns that I've acquired as a result of the sun-sensitivity caused by the medication, I wonder whether I'm in the clear yet. There is no test to determine whether or not a person is free of Borrelia. If I underwent the ELISA and Western Blot now, I would still test positive and probably will for a long time to come.

I'll certainly be on the lookout for a new rash or any unusual symptoms. If I do experience what seems like a light flu in the next month or two, you can be sure I'll be making an appointment with my doctor.

For now, though, I feel fine, although I think this brush with fate has changed me. Recently, I was walking through a parking lot with my daughter when a storm blew in. Under ordinary circumstances, I would have walked slowly, savoring the scary beauty of the moment. I would have reassured my daughter that our chances of getting struck by lightning were infinitesimal-that the very notion of being struck by lightning is a metaphor for unlikely occurrences.

But that metaphor seems less reassuring than it did in the past. I am now living, breathing evidence that highly unlikely things do happen, and the consequences can be long-lasting and life-altering. Recognizing and responding to them appropriately can make all the difference.

- - -

REDUCING YOUR RISK

There are several steps you can take to reduce your risk of being bitten by a tick carrying Borrelia burgdorferi, the bacterium that causes Lyme disease. These include:

- Be alert when you are in an area where ticks are likely to thrive: moist, shady places with low-lying vegetation.

- Wear light-hued clothes to make ticks more visible.

- Wear long-sleeved shirts and long pants. Tuck your pants into your socks.

- Do frequent tick checks. If you find a tick, remove it carefully with tweezers.

[artur737]

- Use a repellent containing 20 to 30 percent DEET.

More complete instructions can be found on the Web site of the Centers for Disease Control and Prevention: www.cdc.gov/az.do. Then
scroll down to Lyme disease.

Finally, if you do get bitten by a tick, the Illinois Department of Public Health wants to see it. They won't be able to determine
if it carries Borrelia burgdorferi or not, but they'll be better able to discern where in Illinois various types of ticks have
become established. Place the tick in a crush-proof container, include information about where it was found and whether it bit a
person or a pet, and send to:

Illinois Department of Public Health

Attn: Entomologists

525 W. Jefferson-3rd Floor

Springfield, IL 62761

[artur737]

Flamborough Review - Kanada

Public awareness is the key to identifying Lyme disease, says victim

Dianne Cornish
Aug 26, 2005

When 39-year-old Rob Manten was finally diagnosed with Lyme disease in June, the Waterdown resident felt like he had won two battles.

Not only had the debilitating disease that had ravaged his body for more than 10 months been identified, but he was now in a position to promote more public awareness about the disease and hopefully convince the Canadian government and some members of the medical community that the presence of Lyme disease in this country shouldn't be downplayed.

The disease is caused by a bacteria called Borrelia burgdorferi, which is left in the human body by deer ticks, often no larger than a poppy seed, that clamp onto the skin and feed on their victim's blood while allowing the bacterium to enter the body. According to the website for the Canadian Centre for Occupational Health & Safety (CCOHS), these bacteria most often cause a mild illness, sometimes accompanied by a peculiar skin rash. But, in some cases, the bacteria can spread to the joints, heart, and brain, causing serious problems. If left untreated, it can cause disability.

Last July, the Mantens were camping near Brantford when they noticed "a whole slew of ticks" around their campsite. Manten was bitten by one and his wife, Janet, recalls pulling ticks off their three children as well.

They weren't concerned about the ticks. After all, they were more than 40 kilometres away from the north shore of Lake Erie and Long Point, which is "the only clearly defined risk area in Canada" for ticks carrying Lyme disease, according to the CCOHS website.

"That's the first misconception we had," Janet said, adding that she and her husband now believe that ticks carrying the disease "could be anywhere," not just along the north shore of Lake Erie. The couple feel that people should be forewarned and they're disappointed by what they see as a cavalier approach to the problem by the Canadian government and much of the medical community.

"It seems they have their heads in the sand where this disease is concerned," Manten lamented.

While Manten acknowledges that he cannot categorically prove that the tick bite he received at the Brantford area park caused his Lyme disease because symptoms can lie dormant for years, he does know that something dramatic happened to his health shortly after being bit by the tick.

Within two months, he began experiencing flu-like symptoms, including fever and nausea. He had migraine headaches every day for two months and he experienced a host of other symptoms, including dizziness, difficulty concentrating, constant ringing in his ears and a pressure sensation in his forehead. He still struggles with fatigue, despite being two months into his antibiotic treatments.

By late October, he was no longer able to function at his job as an environmental engineer for an Oakville/ Mississauga area consulting firm. It was eight months and 13 doctors later before he had a correct diagnosis.

In Ontario, he was tested three times over six months for Lyme disease. All came back negative; the test most widely accepted in Canadian medical circles (the ELISA test) is unreliable, Manten later learned from a local psychologist who he was referred to after doctors in Ontario failed to get to the root of his health problems.

Manten was referred to the psychologist for treatment of depression. After learning about his symptoms, the psychologist promptly told him not to show up for an appointment because, he said, "I think you have Lyme disease."

The Mantens traveled to Long Island, New York, where doctors see many more cases of Lyme disease. There are hundreds of thousands of Lyme disease cases in the United States, most of them near the Canadian border.

Last year, more than 21,000 cases of the disease were reported in the United States, but the Centres for Disease Control believe the number is actually 10 times greater. Health Canada's numbers suggest that Canadians have little to worry about. There have been 310 reported cases of Lyme disease in Canada since 1994, mainly in Ontario and B.C., and more than half of those are attributed to tick bites outside the country.

The U.S. has a better reporting system than Canada when it comes to determining the actual number of Lyme disease cases, Manten charged, adding that statistics are artificially low here because officials require both a positive result on the ELISA blood test, one of two available to check for the disease as well as evidence of a rash that looks like a red bull's eye (something which Manten didn't experience). Because the ELISA test is unreliable and just 50 per cent of Lyme disease victims exhibit the bull's eye rash, Manten suspects the Canadian numbers are greatly understated.

In Long Island in April, Manten saw two doctors, a neurologist and a general practitioner. After looking at various scans, the first doctor concluded Manten didn't have Lyme disease. The other doctor gave him a partial Western blot test, which showed a negative response.

Finally, after looking for information about the disease on the website for the Canadian Lyme Disease Foundation (www.canlyme.com), Manten was advised to see a Toronto doctor who specializes in internal medicine, infectious diseases and medical microbiology. A blood sample was taken in early May and sent to a lab in California for a full Western blot test. The IgM (or early antibody response) to the test came back positive. Ten months after having been bitten by a tick, Manten finally had a correct diagnosis.

"The most frustrating part of all this was, all those months, I had no idea what was wrong and I was gradually getting sicker and sicker," he said. Still, he feels fortunate that it took less than a year for his diagnosis; he's heard of cases that went undiagnosed for 10 to 20 years.

A big part of the problem is that Lyme disease mimics the conditions of many other diseases. Its victims are commonly misdiagnosed with arthritis, fibromyalgia, chronic fatigue syndrome, lupus and multiple sclerosis, Manten said.

Manten is now on the road to recovery. After two months of antibiotic treatment, some of his symptoms have abated. His doctor expects it will take eight months before Manten feels like himself again.

Manten credits his employer, the Hatch consulting firm, for being "incredibly supportive."

But as he fights to extend his short-term leave to long term-disability, his main goal is to get the word out about the dangers of Lyme disease. "It can be encountered anywhere in Canada," he warns. "It's not an epidemic, but it's present."

The Ottawa Citizen (Kanada) - Wrzesien 2005

[artur737]

Bringing Lyme disease out of the woods
For sufferers, much of the problem has been medical ignorance. Maria Kubacki reports.

Maria Kubacki
The Ottawa Citizen

Saturday, September 10, 2005


CREDIT: Bruno Schlumberger, The Ottawa Citizen
Joan McComas was first diagnosed with multiple sclerosis, then a rare and fatal degenerative disease. For her, knowing she has Lyme disease is good news.

Laurie Fraser knows exactly where she was when she got bitten.

It was in the Mud Lake Conservation Area near Britannia Beach.

She remembers because she walked there only once, in the fall of 2003, while on a break from painting her new house.

Something bit her on the neck and it hurt. A few days later, she got a rash with a white spot in the middle. Ms. Fraser suffers from allergies and often has rashes, so she thought nothing of it, assuming she was having a reaction to the paint.

But about two weeks after the rash appeared, she developed flu-like symptoms and back pain. "I could barely get out of bed," she says. A month later she went to the hospital seeking treatment for the pain.

Over the course of the next 15 months, the 43-year-old ESL teacher endured a bewildering array of symptoms

[artur737]

- - -
Ciag dalszy

Lyme Disease, And How to Avoid It

Symptoms: The classic first sign is a rash known as erythema migrans, which appears three days to a month following a bite by an infected tick. Most bites are from a tick in the nymph stage of its life cycle, when it is about the size of a poppy seed. The rash varies in shape but may look like a bull's eye. Common sites are the thighs, groin, trunk, and armpits. However, not everyone remembers the tick bite or the rash. Flu-like symptoms may follow, including fatigue, chills, fever, headache, swollen lymph nodes, and muscle and joint pain.

Later symptoms may not appear for weeks, months or even years after a tick bite and include: arthritis, an irregular heart beat, problems with memory, pain, numbness, paralysis (often of the facial muscles), meningitis, fatigue or sleep disturbances.

Diagnosis: Lyme disease is a clinical diagnosis. Testing should be used only as supportive evidence rather than confirmation of the absence or presence of the disease, says Dr. Harvey Artsob of the Public Health Agency of Canada.

The two-step testing process recommended by the Centers for Disease Control and Prevention (CDC) in the U.S. is used in Canada. Both the initial ELISA screening test and the second-step Western Blot test detect antibodies. The Public Health Agency of Canada considers the ELISA to be 90 per cent accurate to antibodies to the Lyme bacterium, while the Western Blot

Wywiad z doktorem Marianem Sikorą (Czestochowa)

[artur737]

Przytaczam poniewaz ow lekarz mowi dlugim leczeniu i zastosowaniu wysokich dawek. Nadto jakby jest zadowolony z faktu, ze pacjenci zdobywaja wiedze z Internetu.

O chorobach przenoszonych przez kleszcze rozmawiamy z doktorem Marianem Sikorą, ordynatorem oddziału zakaźnego Wojewódzkiego Szpitala Zespolonego im. prof. dr W. Orłowskiego w Częstochowie.


Panie Doktorze, co zrobić, gdy zaatakuje nas kleszcz?
- Przede wszystkim należy niezwłocznie zgłosić się do lekarza, najlepiej do chirurga. Należy jednak nadmienić, że nie każdy czuje ukąszenie kleszcza, ponieważ jest ono raczej bezbolesne. Zawsze, ilekroć wracamy z wędrówek leśnych, z działek, powinniśmy dokładnie obejrzeć swoje ciało. Jeśli stwierdzimy obecność kleszcza, możemy spróbować "wykręcić" go w kierunku przeciwnym do wskazówek zegara. Koniecznie należy usunąć go w całości, a miejsce dokładnie odkazić.
Jakie choroby przenoszą kleszcze?
- Kleszczowe zapalenie mózgu (KZM) to choroba wirusowa przenoszona przez kleszcze, a druga to borelioza - choroba bakteryjna. KZM występuje w rejonach endemicznych. W Polsce występuje w okolicach Białowieży, Mazur.
Jakie objawy występują u osób, które zachorowały na KZM?
- Część zakażeń przebiega łagodnie, niecharakterystycznie. Klinicznie jest to postać poronna. W innych przypadkach choroba przebiega dwufazowo. Początek nagły, z gorączką, dreszczami utrzymujący się ok. 7 dni. Po kilkudniowym okresie normalizacji pojawiają się bóle głowy, nudności, wymioty, objawy oponowe. Choroba może przebiegać jako postać oponowa lub mózgowa.
Czy choroba może zakończyć się śmiercią?
- Przebieg choroby jest ciężki, jednak najczęściej kończy się ona pomyślnie, choć skutki pozostają. Niedowład i zanik mięśni cofają się bardzo powoli, ale niekiedy zostają jako trwałe następstwa.
W jaki sposób można się uchronić przed zachorowaniem na KZM?
- Stosujemy szczepienia - szczepionka FSME immun - 3 dawki w odstępach 0-3-9-12 miesięcy. Można też stosować immunoglobinę swoistą FSMF-Bulin do 96 godzin od zakażenia. Wówczas choroba przebiega łagodnie. W przypadku boreliozy takiego zabezpieczenia nie ma.
Jak ją leczyć?
- Przede wszystkim należy zgłosić się do lekarza. Chorobę tę w pierwszej fazie leczy się antybiotykami. Leki powinny być podawane odpowiednio długo i stosowane w dużych dawkach. Nie leczona wczesna borelioza może przejść w boreliozę późną. Wówczas pacjent narażony jest na powikłania stawowe, neurologiczne, sercowe i skórne.
W Polsce chyba wciąż jest niska świadomość chorób przenoszonych przez kleszcze?
- To prawda, nadal Polacy są nieuświadomieni, jakie mogą być tego konsekwencje. Chociaż w ostatnich latach, w dobie internetu, pacjent zdobywa coraz więcej informacji. Coraz częściej przyjmuję pacjentów, którzy posiadają wiedzę, przede wszystkim na temat boreliozy.
Rozmawiała ANNA KNAPIK-BEŚKA

[wawan1]

Pochwalę się, To właśnie mój lekarz!!!! ))Serio!

[gasta1]

To jakieś światełko w tunelu. Miałaś szczęście, że go spotkałaś. Lekarka mojego
syna, kiedy przyniosłam jej materiały na temat leczenia boreliozy powiedziała,
że u niej w książkach tego nie ma i nie zgodziła się przedłużyć terapii.
Życzę szybkiego powrotu do zdrowia. I przyjemnego urlopu.

Brytyjski Times May 2005

[artur737]

May 30, 2005

Alarm at sharp rise in tick disease
By Valerie Elliott, Countryside Editor


HEALTH experts are concerned at a sudden increase in the number of British cases of Lyme disease, an infection carried by ticks that can be fatal.

In Scotland the number of sufferers went up 35 per cent between 2003 to 2004. In England and Wales there were 97 cases 10 years ago and 320 in 2003. Specialists believe that the true incidence could run into thousands because people, doctors and vets do not know much about it and do not seek treatment.

Patricia Hewitt, the Health Secretary, is under pressure to raise public awareness of the disease and to ensure that GPs and medical students are taught about it.

Some believe that she should make it a notifiable disease in England and Wales, as it is in Scotland. British military personnel and their families already have to notify their medical service if they get it.

Anyone who goes to the countryside is at risk of infection. The disease can also be picked up in parkland where there are deer. City-dwellers who visit parks such as Richmond, Bushy or Victoria are at the same risk as a stalker in the Highlands or a visitor to a stately home.

British hotspots are Thetford forest in Norfolk, the New Forest in Hampshire, the Lake District, the Yorkshire Moors, the Scottish Highlands and the uplands of Wales.

But it is also widespread in the United States, Germany, Hungary and the Netherlands and exists on every other continent too. Between 10 and 20 per cent of British victims are thought to have contracted the disease abroad.

Many people may be carrying the antibody after a tick bite years ago, but showing no symptoms. In those cases the full-blown disease can be triggered by another illness or severe stress.

It causes a rash and stiffness in the joints and, left unchecked, it can affect the central nervous system, causing tingling in hands and feet, or facial palsy. In the worst cases the disease can also affect the heart, liver and spleen and even lead to encephalitis, which can kill. Depression and chronic fatigue grip many patients and ruins their lives.

The symptoms are not identical for every sufferer though — Lyme disease imitates other diseases, which makes it difficult to diagnose.

People should be alert for ticks attaching to the skin and remove them as quickly as possible.

In particular, it is necessary to take care if you are near cattle, sheep, deer, horses and even game birds and seabirds. They can be carried also on hedgehogs, mice and voles.

Dr Darrel Ho-Yen, a Lyme disease expert based in Inverness, spoke of his concern about the rise in the number of cases in this month’s edition of The Field magazine. He believes that the known number of proven cases should be multiplied by ten “to take account of wrongly-diagnosed cases, tests giving false results, sufferers who weren’t tested, people who are infected but not showing symptoms, failures to notify and infected individuals who don’t consult a doctor”.

He believes therefore that in a year in Scotland the numbers have gone up from 430 to 580. Applying his multiplier to England suggests that there are 3,200 cases today.

The Ramblers’ Association has issued urgent guidelines and a new leaflet has been sent to riding schools and trekking centres by the British Horse Society. The UK Lyme Disease Association will hold a special conference at Sheffield University next month.

THE SPREAD OF INFECTION
Lyme disease is caused by the bacterium Borrelia burgdorferi. It is also known as Lyme borreliosis and was named after a cluster of cases that occurred in Old Lyme, Connecticut, in the United States, in 1974

People get infected after being bitten by hard-body ticks (Ixodes species) that have the disease. Ticks get it from birds and mammals carrying the bacterium in their blood

The most common symptom is a rash called erythema migrans, though some patients have flu-like symptoms. This is treated with antibiotics such as doxycycline or amoxicillin

Infection can lead to facial palsy, “viral type” meningitis and nerve inflammation that may lead to tingling in hands and feet, pain or clumsiness. Some people develop arthritic symptoms, which can settle with antibiotics, others experience persistent arthritis

It may be a trigger for chronic fatigue syndrome (ME) or fibromyalgia, a post-infection syndrome

There is no vaccine for Lyme disease

Peak exposure in Britain is April to October

Ticks are tiny spider-like creatures that cannot fly and are common in woodland, heathland and moorland. Unfed ticks are the size of a poppy seed but they blow up to the size of a grape pip when they have been feeding. Larvae are smaller than a pinhead

The risk of infection from an infected tick is low if it is removed from the body within 24 hours of attachment

[artur737]

tym razem starszy nieco tekst

July 8–15, 1999

cover story
Tick Tick

Tiny bug, big trouble: Why the Lyme disease controversy is tearing the medical
community apart.

by Stefanie Ramp with Jen Darr

"It’s like I woke up in a Franz Kafka novel and turned into a slug."

That’s how 39-year-old attorney Joel Shmukler describes his life with Lyme disease.

Identifying with Kafka’s character Gregor Samsa may seem a bit extreme, but
Shmukler — like many chronic Lyme disease sufferers — truly did experience a
painful metamorphosis.

In the early ’90s, Shmukler was honing his skills as an up-and-coming criminal
defense attorney in Philadelphia, with clients ranging from a Nigerian robbery
suspect to low-level mob figures.

His typical day included a 5-mile morning run, preliminary hearings, trials and
bar association meetings. He would head home around 6, get a jump on the next
day’s work, perhaps talk on the phone, and maybe sit down to pay his bills.

Now it takes him three days to get his bills paid.

The cluttered state of his Wayne, PA, condo is evidence of his level of energy
these days. A kitten calendar tacked to the wall is still open to April. Boxes
of medical reports and bags of syringes and IV tubes smatter his living room
floor. The shelves are crammed with books about Lyme disease, a host of other
medical texts, and tattered paperbacks with titles like Ebola, Outbreak and Congo.

He can usually be found at the computer in his dining room, researching Lyme and
keeping in contact with others who have contracted the disease. But that takes
energy.

"Any activity you engage in really sets you back," Shmukler explains. "When you
have a good day, it can knock you out for a few days or maybe a few weeks." He
won’t even schedule doctors’ appointments twice in one week.

Even walking down the grocery store aisle is tough. "I sometimes feel like I am
dragging 100-pound weights behind me."

Shmukler says he finds the fatigue the most debilitating of his Lyme symptoms.
"Swollen glands, pain, neurological damage, cognitive problems — they obviously
can be disabling. But I think I could deal with all of that stuff if it weren’t
for the overwhelming and almost consistent fatigue."

All because of a tick bite in the summer of 1994.

Shmukler was not aware that he’d been bitten by a tick — nor could he have known
that, with Lyme disease, he was about to enter a world of controversy, pain and
confusion.

The tiny deer tick that hosts and transmits the bacterium responsible for Lyme
disease is a creature barely larger than the period halting this sentence. Yet
it has compromised thousands of lives and instigated an acrimonious rift in the
medical community.

Nearly all researchers and clinicians agree on one thing: Early detection and
treatment of Lyme disease results in a very high effective cure rate. But they
disagree on whether chronic Lyme symptoms, which can be permanent and include
joint pain, paralysis, memory loss and other cognitive problems, depression,
seizures and sleep disorders, are caused by a persisting infection or are merely
the result of a lingering autoimmune response triggered by the disease.

For patients who continue to suffer from Lyme symptoms even after standard
treatment, long-term antibiotic therapy offers the best hope. But it’s quite
expensive, and because one well-established faction of the medical community
denies the efficacy of multiple long-term courses of IV antibiotics, insurance
companies have successfully contrived to refuse coverage.

In January, Philadelphia-based SmithKline Beecham introduced the first
FDA-approved vaccine against Lyme, promoting the product, LYMErix, with a TV ad
campaign. But like everything else connected with this disease, even the vaccine
has stirred controversy (see sidebar).

Biologically speaking, Borrelia burgdorferi (Bb), the spirochetal Lyme
bacterium, is an admirably crafty organism that can hide in its host’s body
escaping eradication and even detection, so most of the medical community,
including the Centers for Disease Control and Prevention (CDC), agree that a
diagnosis of Lyme should not depend on positive tests. The most common tests are
the ELISA and the Western Blot, both antibody tests measuring the body’s
reaction, or lack of one, to Borrelia burgdorferi. Although the CDC guidelines
for reported cases of Lyme require a positive test, the CDC itself clearly
states that its criteria should not be used for clinical diagnosis. Rather, the
CDC says, Lyme should be diagnosed based on a doctor’s evaluation of symptoms
with the tests providing support.

"From a surveillance standpoint, the CDC has a very strict definition of Lyme
disease," explains Dr. Carolyn Johnson, an epidemiologist with the Philadelphia
Department of Public Health.

But if tests come up negative for a patient with clear symptoms of Lyme disease,
"I don’t think a physician should be dissuaded from treating for Lyme."

According to the Morbidity and Mortality Weekly Report, which is published by
the CDC, Pennsylvania has the third-highest number of reported Lyme cases in the
country (2,387 in 1998) after New York and Connecticut. Philadelphia logged 178
confirmed cases of the disease in 1998. But Johnson estimates that her
department "investigated" up to 900 reports of Lyme, many of which were rejected
because they didn’t meet the strict surveillance criteria.

"That’s not to say those people didn’t have Lyme disease," she adds. "They just
didn’t meet the criteria."




Despite a substantial faction of doctors and patients who believe in the
efficacy of long-term antibiotic treatment for chronic Lyme, old habits are
still dying hard — particularly for tradition-bound academicians.




In 1996, an Armonk, NY, internist named Dr. Kenneth Liegner concluded from a
study of his own practice that "you’re missing more people than you’re finding
if you follow the CDC’s recommendations on how to test for Lyme disease." While
Liegner’s study didn’t include a statistically significant number of patients,
preliminary information stemming from an NIH study of chronic Lyme disease,
using only definitively diagnosed Lyme patients, is finding a similar pattern.

Many doctors, however, believe strongly in the reliability of current Lyme tests.

Dr. Stephen Gluckman, director of clinical services in the University of
Pennsylvania Hospital’s infectious disease division, says the tests for Lyme are
"wonderfully good."

He believes the real problem is the doctors who are too willing to diagnose Lyme
disease.

"There are two types of Lyme doctors — and I’m not saying this in a negative way
— there are doctors who are scientific, like me, and there are a lot of
self-proclaimed Lyme doctors. We speak two different languages, we have nothing
in common."

Many of these "self-proclaimed" Lyme doctors are "truly trying to help their
patients," Gluckman says, but "they are wrong."

Instead of helping patients, some doctors are feeding a social phenomenon that
exists only in this country, he says — Lyme-related psychiatric disorders. Web
sites and support groups also only encourage the phenomenon, he adds.

Indeed, that was one of the early diagnoses given to Joel Shmukler — that his
problem was more psychological than physical.

Following his tick bite, he was hospitalized with a high fever that baffled
doctors, and later developed a bull’s-eye-shaped rash, a common symptom of Lyme
disease. A friend urged him to get tested, but a visit to an infectious disease
doctor yielded nothing.

"He rejected the possibility that it could be Lyme disease and told me the rash
was fungal.

cd Tick Tick

[artur737]

He said I could probably find doctors who could tell me I had Lyme disease, but
that they were quacks who ran mind mills."

Shmukler says the doctor suggested that he had a personality disorder and urged
him to seek psychiatric treatment.

"I have no history of psychiatric disorder," says Shmukler. "My biggest risk
factors were happiness, success, rising quickly in my profession and a happy
romantic life."

Eventually, in 1995, another doctor did diagnose him with Lyme. Shmukler has
been on a regimen of self-administered intravenous antibiotics ever since.



Despite a substantial faction of doctors and patients who believe in the
efficacy of long-term antibiotic treatment for chronic Lyme, old habits are
still dying hard — particularly for tradition-bound academicians at research
institutions like Yale University.

Yale is largely perceived as the beacon of Lyme wisdom, having essentially given
the disease its name. In 1975, two mothers in Lyme and East Haddam, CT, became
alarmed about the many cases of arthritis in area children and contacted the
health department. Researchers from Yale University identified "Lyme arthritis"
in 39 children and 12 adults. (Records indicate that an illness with similar
symptoms was observed as far back as the 1800s.)

Everyone agrees that Yale doctors have done a great deal of valuable research on
Lyme. But many observers have become critical of the old-school Lyme vanguard —
primarily Dr. Allen Steere, who worked with the Connecticut children in 1975 and
named the disease (he has since relocated to Tufts-New England Medical Center)
and his key Lyme associates from Yale, Dr. Robert Schoen and Dr. Eugene Shapiro
— for clinging to their conservative opinions and jealously guarding their
presumed founder’s rights to the disease.
It’s not so much the conflict of medical opinion to which Yale critics take
exception, because, in truth, there’s not enough Lyme research to prove any
faction’s hypothesis definitively. Rather, it’s the close-mindedness of Yale’s
most prominent Lyme doctors, who refuse to consider the possibility that
standard diagnosis and treatment protocols are flawed.

Carl Brenner, one of two patients who sit on the National Institute of Allergy
and Infectious Diseases (NIAID) advisory committee for clinical studies on
chronic Lyme, agrees that definitive research is decidedly lacking. "It’s a
fairly new disease so there’s not a whole lot of a paper trail. Early on in this
disease, conclusions were jumped to which have been modified over time as a
result of good science. But I think people in any scientific field are sometimes
reluctant to let go of pet theories, and I think people on both sides of this
controversy are guilty of that.

"It amazes me that people are so entrenched in some of their positions given
that the data really isn’t there to support them one way or another. You can
create a pretty good case for either side of this controversy. My interest is
simply to make sure that enough data gets gathered so that we can get some
momentum towards figuring what the true nature of this illness is."

Thomas Forschner, executive director and co-founder of the Connecticut-based
Lyme Disease Foundation, and many others suspect that potential liability may be
encouraging some doctors’ stalwart resistance to the concept of chronic
infection and under-diagnosis. "If, in fact, these patients are chronically
infected, and there’s mounting evidence that this is a possibility, some of
these doctors who have been going around obstructing patients’ treatment —
literally going out of their way to do that at times, and testifying for
insurance companies etc. — are potentially at risk for lawsuits." Westchester,
NY, attorney Ira Maurer confirms that he is handling several Lyme cases
involving misdiagnosis along with the cases of LYMErix trial patients who
allegedly became ill from the new vaccine, but he will not comment further.

[artur737]

"In the textbook of pathology, which every medical student reads, it is written
that there is chronic Lyme.… We know from syphilis [a spirochetal infection
similar to Lyme disease] that this type of bacteria, the spirochete, can be
alive and persistent, though at times dormant," he says. Katz asserts that
refusing to accept the evidence for chronic infection is "an example of how
people are going to an extreme and damaging both themselves and the patients."

Some journal and newspaper articles have gone so far as to suggest that other
diseases such as multiple sclerosis, chronic fatigue syndrome and fibromyalgia
could actually be Lyme disease.

"There’s no data that supports those claims," says Dr. Roger Pomerantz, director
of Thomas Jefferson University Hospital’s Immunology Center.

The Philadelphia Health Department’s Dr. Johnson believes physicians have become
tired of hearing so many claims of Lyme infection.

Katz also suggests that more conservative doctors might fear "misuse of
treatment facilities and antibiotics, and they’re afraid that people will suffer
from the side effects of those prolonged treatments." Katz himself believes that
there isn’t enough information about repeated courses of long-term IV therapy
and he limits such treatment in his own practice to three months, at which time
therapy is extended if a careful reassessment of the patient seems to warrant it.






"It’s like having a little worm in you — it hits this knee, then that knee, this
shoulder, then that shoulder, it jumps around," says Roxborough resident Marion
Frederick.






Though Dr. Schoen believes that in most cases antibiotic-related risks are not
severe, he nevertheless opposes long-term therapy. Schoen explains that in rare
cases prolonged use of antibiotics can cause gallstones, temporary and
occasionally permanent liver damage, and, more commonly, mild allergic
reactions, susceptibility to yeast and fungal infections, gastrointestinal
dysfunction, localized inflammation or infection from the IV line and
antibiotic-resistant strains of the bacteria.

Penn’s Dr. Gluckman believes long-term IV therapies are "dangerous and should
never be done."

There are plenty of "testimonials" that say the treatment is effective, he
asserts, but not a single scientific study showing that treatment to be effective.

"There were 30 different cures [based on testimonials] for herpes before they
were all considered to be useless," he observes.

[artur737]

Whatever the effectiveness of long-term IV treatment (many chronic Lyme patients
say it’s the only thing that helps), some patients reject the option. When a
doctor suggested the alternative to Philadelphia resident Marion Frederick, 65,
she responded in no uncertain terms.

"I said, ‘Get the hell out of here! Forget it. I am not walking around with a
shank in my arm.’"

You might not think you’d be likely to contract Lyme inside city limits. Some
doctors even discourage city dwellers from getting the vaccine — not because of
its questionable efficacy rate, but because they believe the vaccine’s risks
outweigh the possibility of city residents actually being infected with Lyme.

Jefferson’s Dr. Pomerantz was vaccinated for Lyme. But that’s because he lives
in Bucks County.

"If you live in the center of Philadelphia, you are unlikely to be in contact,"
says Pomerantz. "I wouldn’t get yellow fever vaccine."

Still, there’s a risk if you spend time in heavily wooded areas of the city.
Just ask Frederick.

Frederick lives in Roxborough, where deer ticks are as common as blades of
grass, and where 16 percent of the city’s 1998 Lyme cases were recorded,
according to the Health Department’s Dr. Johnson. Frederick says that all her
doctor had to do was look at her address to know she had Lyme disease.

Unfortunately, she wasn’t aware she had been bitten by a tick until months later
when a severe illness put her in the hospital.

"All my vital signs were fluky," she says.

Before she was infected, Frederick was active — more so than many people her
age. The way she describes it, she had a hard time keeping still. Even her
diabetes and a family history of arthritis couldn’t keep her from getting things
done.

Now, however, her energy level is nowhere near where it was before she was first
diagnosed 10 years ago.

"I would get out of bed, have my breakfast and my insulin, and think ‘I’m going
to do this and I am going to do that today.’ I’d get outside, put the tailgate
down on my truck and just sit there and stare at it."

Her spirit was willing but her body was exhausted.

The disease has devastated every one of her joints. "It’s like having a little
worm in you — it hits this knee, then that knee, this shoulder, then that
shoulder, it jumps around."

Once she was told she had Lyme, she took antibiotics for six weeks. The
treatment didn’t bring her back to normal. Though she rejected the IV
alternative, she’s asked for surgery, but has consistently been discouraged.

"Physicians don’t like to operate on joints when they are dealing with Lyme.
Perhaps they think because the disease is in your system, it would probably
affect another joint," she says.

"I really believe that’s another side effect of Lyme. Doctors hear that you have
it and it creates a greater problem. They are not as optimistic."

Still, she remains upbeat.

"You just learn to live with it, especially if you are 65. You are supposed to
get these things."

[artur737]

Drs. Schoen and Shapiro of Yale believe that Lyme is overdiagnosed and
overtreated. "There’s this myth that’s been perpetrated that Lyme is difficult
to treat and causes horrible complications, and that rarely is true," remarks
Shapiro. "I also think it’s more socially acceptable to have Lyme disease than
to have, say, depression, and people like to put a name on things.… There are a
ton of people with nonspecific symptoms and most of their positives are false
positives [for the ELISA and Western Blot], so that they think they have this
diagnosis of Lyme."

Schoen suggests that long-term treatments carry a psychological risk as well as
a physical one. "There are many patients who’re being treated and told that they
have a chronic, very-difficult-to-cure problem with long-term, wide-spectrum
antibiotics as the only treatment option. If I feel that the patient doesn’t
have Lyme disease and doesn’t need that treatment, then I mean that to be
reassuring to that patient — that they don’t have this disease."

What has been less reassuring to some patients is the fact that Schoen consults
for several insurance companies and Shapiro formulates insurance coverage
policies. Critics charge Schoen’s apparent conflict of interest may prevent
chronic Lyme patients from getting insurance coverage for the care they need,
and Shapiro is making sweeping decisions about what treatments Lyme patients
deserve. While most insurance companies pay for the standard oral antibiotic
treatments indicated for acute early-stage Lyme, most insurance providers have
been far less willing to pay for long-term IV therapy, which can cost up to
$6,000 a month.

Even though many patients suffering from chronic Lyme symptoms have been
prescribed IV treatment by their doctors, most insurance companies won’t approve
coverage unless one of their own consultants concludes that it’s necessary. For
consultants, then, medical opinion and money — several hundred dollars an hour —
become irrevocably intertwined.

A propulsion engineer for NASA and Lyme patient Peter McFadden says he was
denied coverage for antibiotic treatment after Schoen reviewed his case for his
insurance company and reported that McFadden did not have Lyme despite a
positive PCR test (detects Bb DNA) and a well-documented bull’s-eye rash noted
by his treating physician as "being the size of a dinner plate." Further
frustrating McFadden, Schoen wouldn’t or couldn’t explain what exactly McFadden
was suffering from if not Lyme.

McFadden’s insurance company ultimately reassigned the case to a different
consultant who agreed with McFadden’s physician; treatment was covered and the
insurance company has been relatively supportive ever since. When McFadden
requested a copy of his complete records, he found tucked in the file a bill for
Schoen’s consulting job on his case, charging the insurance company $700 for two
hours of work.

McFadden has accumulated a good deal of research on Schoen’s practices and has
been contacted by many other Lyme patients who feel they’ve been unfairly dealt
with by Schoen as well. One patient, an attorney in New Jersey, had a positive
Western Blot and a positive PCR, but Schoen said she did not have Lyme.
According to McFadden, based on statistical analysis, the chance that both tests
would result in false positives would be one in 50,000. He quips, "No university
or group of individuals is responsible for more patients with Lyme disease going
without treatment than Yale."

Fully admitting that he’s a consultant, Schoen responded to these accusations by
telling the New Haven Advocate, "I deal with questions about Lyme disease all
day long in all kinds of different settings. I don’t feel anyone has any
leverage over me at all. Wherever the questions are coming from, I give the
answers I consider to be in the patient’s best medical interest."

[artur737]

According to several Lyme physicians, disagreements over Lyme treatment have
evolved from academic squabbles to active animosity in some cases, with doctors
accusing their colleagues of everything from overdiagnosis of Lyme to
malpractice to profiteering. Says Dr. Liegner, "It’s not an exaggeration to call
it a war — a war of ideas — and there have been casualties in the process.
People have been scapegoated, careers have been, if not permanently destroyed,
seriously damaged." Liegner notes that syphilis engendered a similarly ferocious
controversy around the turn of the century and that spirochetal diseases seem to
have had the innate power to spark chaos throughout history.

Such a raging conflict has arisen among insurance companies, doctors and
patients over chronic Lyme disease care that Connecticut Attorney General
Richard Blumenthal dedicated himself to passing legislation (passed on June 9,
effective Jan. 1, 2000) that would mandate coverage of long-term treatments
prescribed by a patient’s doctor without requiring a second opinion from
insurance consultants.

"Quite bluntly, government shouldn’t be deciding what kind of treatment is
provided and insurance companies shouldn’t be making arbitrary and capricious
decisions about coverage to save money when certain kinds of treatment have been
shown to work and improve the condition of people suffering from Lyme disease. I
want to leave the decision to medical professionals," Blumenthal explains.



Joel Shmukler says he’s had minimal problems with his insurance company, Blue
Cross/Blue Shield, though many companies have refused to cover chronic-Lyme
treatments. He pays as much as $1,500 a week for his medication.

Despite feeling "pretty much wiped out and disabled" since 1994, he says his
condition has been slowly improving — unlike many other chronic Lyme disease
sufferers.

After he was diagnosed with Lyme, Shmukler became a regular at the local
library. He wanted to know more about this illness that was controlling his
life, and he also wanted to be able to understand the medical jargon.

After accumulating a houseful of medical journals, reports, newspaper clippings
and a few shelves full of books about Lyme disease, the logical next step was
sharing it with others.

"How could I just sit by while people are being blown off by their doctors and
potentially serious infections are being ignored?" he asks.

In 1997 he started Lyme C.U.R.E., the only Lyme disease support group in the
Philadelphia area.



Definitive research on Lyme in humans is lacking, in part because you can’t
euthanize people and study their brain tissue — one of the places the spirochete
is thought to hide. Nevertheless, a study published in the Journal of Clinical
Microbiology in January 1997 provided solid evidence of persisting infection in
dogs.

The National Institutes of Health has been working on a comprehensive study, the
first major Lyme research endeavor of its kind, to help elucidate this
possibility. Mark Klempner, principal investigator for the Chronic Lyme Disease
Study, and Louisa C. Endicott, professor of medicine at Tufts University School
of Medicine, explain that the chronic Lyme component of the study hopes to
discover whether chronic infection persists, whether long-term antibiotic
treatment is effective and whether better diagnostic tests can be developed.

A related non-human primate study is being conducted at Tulane Regional Primate
Center in New Orleans, which may prove to be even more helpful. Rhesus monkeys
will be infected, the spirochete will be allowed to disseminate, and then the
same treatment regimen used in the human study will be administered. Researchers
will study their tissue in an attempt to ascertain whether the spirochete has
survived treatment.

The study has been in progress since 1996, and it’s estimated that it will
continue for another two to three years. "I don’t think that answers are
imminent," cautions Brenner, a member of the NIAID advisory committee. "It’s an
extremely complex disease and it’s painful to admit that. I don’t care how much
money and effort you throw at this and how much good faith people on both sides
can show — I don’t think the answers are right around the corner."



For More Information…

Lyme Disease Foundation: main number, 1-860-525-2000; national hotline,
1-800-886-LYME; Web site, www.lyme.org

American Lyme Disease Foundation: www.aldf.com/index.cfm

Lyme Disease Information Resource: www.x-1.net/lyme/index.html

Lyme Disease Network: www.lymenet.com

SmithKline Beecham information about the LYMErix vaccine: 1-888-LYMERIX
(596-3749) (ext. 700), www.lymerix.com

National Institutes of Health: www.nih.gov

For Information and Participation in the NIH Chronic Lyme Study: 1-888-LYME-CTR

Centers for Disease Control: www.cdc.gov

Lyme C.U.R.E.: 1-610-647-2058; [e-mail]

[dominik59]

Ad1
Od 4 lat
Ad2
reumatoidalne zapalenie stawu barkowego oraz wiele innych zwiazanych z ogólnym
osłabieniem, zawrotami i bólami głowy
Ad3
Od roku
mieszkam w Warszawie