posted
adam, i hope you are NOT GOING TO MAYO CLINIC; they are NOT LYME LITERATE THERE! 50% of our folks have gone there and were ripped off $$$.
they are infectious drs; NOT LYME LITERATE.
please send me a PM, PRIVATE MESSAGE, and tell me full name, city/state who you are going to see. i'll check to see if they are on my list, and any comments shared w/me ok.
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Yes, if you can find and IDMD who is LL that is great. They do exist, despite what others on this forum will come along and tell you. Do your homework first.
Posts: 1452 | Registered: Feb 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
No, no and... NO*)!!!
Sorry!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. I hope they exist somewhere, but not around here they don't*)!*)*!)
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I was in the hospital shortly after first getting ill in 2003 and none of the doctors believed I had tick-borne illness except the infectious diseases doctor.
The other doctors sent me home with a prescription for risperdal and a recommendation to see a psychiatrist.
The ID doctor admitted she didn't know much about Lyme but that she did believe my problems were from tick-borne diseases.
She sent me home with a prescription for IV Rocephin. It gave me a major herx and was the start of my road to improvement.
She's the only ID doctor I've ever come across who was reasonable. This same doctor had even saved my mother from listeria poisoning when she was terribly ill with heart disease in 2000.
So, there are a FEW good ID doctors.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Adam - at the time I saw the good ID doctor I had only been infected for 2 1/2 months and my only symptom was hip weakness which prevented me from walking. I did not know much about Lyme at the time and was extremely confused about why the doctors were so skeptical when I told them I was sure it was unresolved Lyme disease.
You see, I had been bitten by a deer tick just above my navel on my 9-months-pregnant abdomen in March, 2003 and within 2 days had a raised, itchy, bull's-eye ring around the bite site. Despite 4 weeks of amoxicillin, given to me by my HMO doctor because of the rash, I woke up one morning in May, 2003 and couldn't walk. Every time I tried I just keeled over.
I tried to tell every specialist who came to see me in the hospital that I was fine before the tick bite but afterwards I could not walk.
I had no other symptoms, probably because the amoxicillin suppressed them. Because I'd been treated with the "recommended" amount of antibiotics and because I had no other symptoms and nothing showed up on tests, I was considered a classic "conversion disorder" case.
I was told I subconsciously didn't want to care for my new baby (who by the way, has Lyme now, too).
After I took the IV Rocephin prescribed by the ID doc, I had a terrible herx, and ever after that I've had the gamut of symptoms. For about one month I was able to walk normally, though with a lot of joint pain, and then everything went to h***.
My LLMD has treated me for: babesiosis, ehrlichiosis, mycoplasma, bartonellosis, and neuroborreliosis. I probably have lots of other diseases that have no name or test.
I have been one sick puppy, I tell you, and I still am. But my LLMD has been able to get me up and walking about 90% of the time, for which I am extremely grateful, but I still feel really awful. Spending hours in bed, sick and unable to walk after I went downhill after my first round of Rocephin was extremely distressing for me, especially since I had 3 very young children to raise and no family nearby. My husband nearly lost his job, AND his mind, trying to help me!
Anyway, that's a long-winded answer to your questions. Take care! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Keep your expectations low. There's always a chance. I hope it turns out well.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Adam, you'll have better luck with an LLMD but you already know that...
Since you asked for "semi-positive" experiences, though, I can tell you I had one... My LLMD sent me to an ID to monitor my IV and it was okay.
I would say he was semi-LL, but then he knew my LLMD professionally if not personally, and I'd been referred to him by her.
Who did your original babs test, anyway? And what test was run? Some labs are better than others, and maybe you can talk your doc or the ID into using a different lab or a different test.
Igenex, of course, but MDL and Stonybrook are pretty good, too - maybe someone else can back me up on that, it's been a while so my memory might be off.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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quote:Originally posted by adamm: So, I guess I shouldn't expect to be able to persuade one to prescribe Atovaquone as a precatuion when I've tested negative for babs. NOPE...very doubtful.
Has anyone ever been able to sway a non-LL doc by showing them studies? Even less likely. They're hard-headed.
How often is Borrelia transmitted by dog ticks? More often than most people think. I don't trust ANY tick![/QB]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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