Topic: LLMD with best success rate anywhere in the world...
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
So... how would one go about finding out the statistics of "cure" rates with various LLMDs worldwide? I'd like to get a second opinion, because I have so much riding on this, and I want to be responsible. Since I'll be using airmiles, and visits seem equally expensive everywhere...
I have heard Dr. R. in New York has a good success rate...any other thoughts?
Best,
canbravelyme.
Posts: 1494 | From Getting there... | Registered: Aug 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi,
I don't think there are any statistics. You really just have to go on referalls from happy patients (seeking a doctor).
Not sure who Dr. R is, do you mean Dr. R. H.?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
In addition, I've been doing google searches:
"But a Swiss doctor who stopped to talk was perplexed by all the furor. There is no controversy over Lyme disease in Europe, said Dr. Fritz Hasler, a physician in private practice in Chur, Switzerland. Doctors simply treat patients with antibiotics until they get better, Hasler said." Does that mean things are better for "cures" in Europe? Is there a European Lyme Bulletin Board?
Also, there apparently? was a study done that was called, "Physician preferences in the diagnosis and treatment of lyme disease in the United States"...any thoughts / heard anything on that one?
Best,
canbravelyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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MagicAcorn
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posted
Canbravelyme said: Is there a European Lyme Bulletin Board?
Food for thought though: The ticks in Europe carry different strains of borrelia so the treatments they use for those strains probably won't work on you if you've been bitten in Ontario.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks,
Mind you, I think I read this morning that it was previously believed that Euro Lyme strains were the only ones that caused CNS problems...I'm not sure we're not dealing with the same bugs. At this point, I want to ascertain who has / which docs have the highest batting average.
Likely I was exposed in NH/Maine as well as Ont.
Best,
canbravelyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Forget about treatment in Switzerland. That's one of the worst places to go if you want treatment for Lyme.
Ask Hardynaka (Selma).
I think the US is still the best place for this - by far!
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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canbravelyme
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Member # 9785
posted
Thanks, Gabrielle!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
My allergist who is polish and has contacts with some of the most world renoun doctors in Europe, Russia, Poland, and I think one other country said that in their countries they don't treat lyme with IV antibiotics.
I think she is actually a really good doctor duck but based on her contacts in those countries she doesn't feel that lyme is a problem.
There is a part of poland that is endemic with lyme and her son who is about my age (20) was over there and got bit.
The tick was wedged in his leg and they couldn't get it out in the polish hospitals so he had to fly home to have it surgically removed.
Her son complained of muscle and joint pain. flu like symptoms etc. So she gave him 7 days of an oral antibitioc (this was all within 6 days). He still complained so she gave him 10 days of IV rocephin.
he still complained and she told him it was in his head.
This was all off the record though...Intresting to me that she gave him IV drugs dispite her close colegues advice.
And of course told me I couldn't do any rocephin and that I was crazy and going to get cancer.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I am curious about why you say Switzerland is the worst place to get treatment for Lyme?
I am asking because I lived in Geneva for three years and have friends there.
If you prefer to reply privately, my email address is [email protected]
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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It's not only what Selma experienced. We have people from Switzerland in the German Lyme Forum and from what they say there is only one LLMD in Switzerland.
She is very good and a member of the ILADS, but she doesn't take new patients anymore (she is booked out).
Then, there is one doctor who is "specialized" in Lyme and recognized in all Switzerland as "THE SPECIALIST". Lymies are sent to him by their doctors and only if he determines that they have Lyme they get treatment.
A woman that I found in a forum and who's symptoms were screaming "LYME" came to him and was tested with Westernblot. She had lots of positive and specific bands and was still rejected by him (and consequently by her doctor, also).
The specialist said that she probably once had had Lyme but that all her symptoms probably came from her falling on her head when she was ice skating ...
She told him she had most of the symptoms before but he didn't listen.
Maybe there is a good doctor somewhere hidden behind one of the mountains but I never heard of any.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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bettyg
Unregistered
posted
good question!
no 2 lymies are the same; so drs. names won't make a difference since each one of us is UNIQUE with our own symptoms, length of time having been bitten.
perhaps you could go to ILADS website, and check for the names of recent speakers at their annual conference a couple of months ago! that's my only guess.
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hardynaka
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Member # 8099
posted
HI guys, it's me. I'm from Switzerland. Nope, as Gabrielle said, there's just one doctor I know that treats with long term abx. Long time booked out (since at least 2004 when I called her).
This doctor in Chur (that's very very inner country...) probably meant like others: 2 weeks doxy, then symptoms will go out of course. If something else appears, you got something else but no lyme. Of course.
I went to Zurich to see THE lyme specialist, had many positive Westernblot bands, got the same answer as the friend from Gabrille: "nope, you had lyme, I can see it, but now you're very probably cured."
"Air hunger? It's the flu. Arthritic type of pains? I see nothing, you got pains due to your lack of iron. Come back in one year for a check up. Bye!!"
Do you think I came back????
I also did the turn of Belgium doctors, tropical medicine specialists, professors... Nope, zero diagnostic. "Babesiosis??? Are you kidding??"
So I don't see much hope here around.
Fortunately some alternative protocols seem to work for many people. I took practically zero antibiotics and got back to 90-95% of how I was before this damm disease struck.
Everybody here looking for antibiotics look towards the US. I had contact with a few that did the whole intercontinental trip to see a LLMD.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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