1st LLMD today-no answers please help:(

[one4islands]

Very discouraged perhaps someone can shed some light.  My first visit w/ LLMD after testing positive w/ Western Blot.  Positive IgG & M 23, IgG & M 41 and IgG18.  I have suffered Lyme symptoms for at least 5+years and they've gotten worse.  Recently told that I may have fibromyalgia (not officially diagnosed) before the Lyme test.  Dr. said "if" I had Lyme it was early stage. He said the Lyme tests are highly inaccurate.  He didn't want to treat me w/ antibiotics as he said he felt my system was oversensitive and would do more damage than good.  I thought you need the antibiotics to rid the bacteria. I finally talked him into an rx for Amoxicillin (allergic to Tetracycline).  He recommended see a dr. for fibro and to see if those meds helped.  So does this Western Blot mean nothing?  I thought it was accurate especially those bands.  Any advice is much appreciated:)

[Marinella82]

You should deffinatly see another doctor it doesn't sound like he knows anything about the disease.  It took me a long time before I could find a doctor willing to properly treat me and i live near the area it was named after.  Five years is a long time to be suffering with the disease.  There is a movie called "Under Our Skin" you might want to rent or buy it.  It will explain more about the disease and the controversey surrounding the disease.

[JackieCalifornia]

Well, your doc is right about one thing: the blood tests are not all that accurate, but the bands that show positive on your test results are strong indicators of Lyme, as I understand it (but I'm not medically trained).

That said, your doc does not seem to take an approach to Lyme that more progressive docs do.  In the face of your test results, it makes no sense to me your doc would not treat you for Lyme despite the positive test because it's too 'early' to treat it?  'Early' is exactly when Lyme should be treated.

An 'over sensitive' person should, to my understanding, be treated, not ignored so that the disease progresses -- then it is just harder to get rid of, and Lyme is not something to mess around with.

I don't know that amoxicillin will do the trick against Lyme -- there are various meds that different Lyme docs like to use, but that one doesn't come to mind as first in line.

Also, I am doubting that your doc tested you for other diseases carried by the Lyme ticks, and they need not only separate tests, but also often different medications.

That the doc is guiding you toward a diagnosis of fibromyalgia, while acknowledging that you have Lyme, strikes me as particularly odd.  Fibro is, I understand from reading, a catch-all diagnosis when the docs can't figure out what else it might be, but they don't know what fibro really is ... tho there is some suspicion in the Lyme world that fibro is just untreated Lyme.

I'm kind of tired right now, so I'm not being very diplomatic, but in your situation, I would find a new Lyme doc, and do it very quickly.  Be sure to get copies of all your tests and take them with you to the new doc (and *always* keep copies for your own files -- you might need them later).  To avoid irritating your current doc, I would not necessarily tell him/her you are going to another doc, but instead just quietly find someone else for a second opinion.  You might need your current doc for something, so no point in alienating him/her.

In your situation, I would do the following asap:

--get copies of your current tests
--find another Lyme specialist
--be sure your new doc tests you for other infections carried by Lyme ticks, based on your history and symptoms

To find a new Lyme doc, try these websites:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

or google/search your geographic area ["LLMD Virginia"] to see what you get.  There are some not-so-great Lyme docs out there, since it's a field that is changing constantly with new understanding and treatments and research, so if one of them seems odd to you, move along to the next one.

If you want to read about the progressive view of Lyme, go to ilads [dot] org and under 'About Lyme', read Burrascano's 'Diagnostic Hints' and other items there -- they overlap a bit and are a lot to digest, but this is the Lyme group that takes the disease seriously.

You are asking all the right questions, and your instincts are sound.  

Best wishes to you, let us know if you have any questions and also how you do --