posted
i am so confused and any help would be great, i switched from my llmd in my area, not going to go into why right now, so i have my pcp and he thinks i've been on abx way too long over 4 years but the thing is since last march i started doing pretty good when i started on bicillan la first one shot a week and then after a few months i went up to two and still i'm not 100% but its tolerable and it way better than the way i was, prteety much either on the bed or counch laying around in constant pain, now i still take pain meds but cut down alot since last couple years. they problem is my pcp wanted me to stop my abx i was scared to since they been helping but he sent me to a infectious diesease doc and he took another lyme test, oh yes my one in july of 02 was positive both the elias and the wb now he take a lyme test not sure even which one didn't send it out just a local lab and he said it's neg. and that i never had lyme but when i was in his office he siad that i did have lyme and now the abx killed it and i'm left with residule effects, now he changing his mind since the test came back, but when i asked what i have/had he said he doesn't know, just that i should get of f my pain meds. i did go off my abx for a week now just to see if i do need them anymore, but i am scared, does anyone ever never need them? and i was approved for ssdi in 2004 know what if i get worse again will this doctor hurt my chances of keeping my ssdi? i am trying right now to see what happens so i can go back to work but my pcp says not to rush it. has that ever happened , where a test has been wrong and you never had lyme in the first place, i did see dr donta though right after and he confirmed my dx. sorry for rambling iam just confused and scared and i really need to find another llmd to see that really beleives in chronic lyme, myjesticgirl5
Posts: 39 | From sharon,pa usa | Registered: Jan 2003
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It sounds to me that finding another LLMD is the appropriate next course of action.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Its very common for infectious disease physcians to tell a patient they never had lyme per the results of labratory work. Rest assured, this is not based on science, but a few artilces published in JAMA per the opinion of Dr. Allan Steere.
There is no test to rule in or out definitivly Lyme, unless of course you get PCR testing, or culture. The most important thing is cause and effect, if the Bicillan works, then go with biology, because biology is never wrong, people are.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
I tested negative 3 times before and after testing positive igm western blot through igenex, and every doc I saw except llmd told me I didn't have lyme.
I would have to agree with finding another llmd.
Posts: 413 | From nj | Registered: Nov 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A negative test means absolutely nothing. Lyme is a clinical diagnosis. If he is ruling out Lyme just because of one test, then he is not knowledgeable about Lyme.
I also do not trust this doc for saying you need to stop pain meds without offering an alternative. If you have pain, you need to treat the pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is just my expereince and opinion as a lyme patient.
There is a theory that if you have had a short (it varies between drs but usuually if you have 4 weeks they consider that enough) period of abx then you know longer have lyme. After that they believe it is post lyme syndrome or fibro or whatever bs they feel like telling you.
If abx are still helping doesnt that indicate something bacterial is still active?
If I were you I would get another llmd asap.
If you post in seeking a dr I am sure someone can help you find one.
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![[confused]](graemlins/confused.gif)
f my pain meds.
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