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Anyone test negative and pursuing treatment anyway?

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Lyme Disease
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Posted 4/10/2015 5:24 PM (GMT 0)
First, I'm a newbie to the forums but have gained a lot of knowledge here. Thanks!

I've been having symptoms for about six years, seen several doctors, and been given a diagnosis of fibromyalgia over and over again. I'm getting worse. I started seeing a new doctor in November; he thinks I have Lyme and sent blood off to Igenex for testing. The more I've been reading about Lyme, the more convinced I am that I am suffering from this dreadful disease! It accounts for all of my symptoms (some of which fibromyalgia does not account for). I'm still awaiting results, but I was wondering if anyone here has pursued treatment based on clinical diagnosis alone--with negative test results.

Also, how would I know if my doctor is an ILADS-minded LLMD?
Posted 4/10/2015 5:39 PM (GMT 0)
Hi wvm- my IGENEX and CDC Western Blot both came back negative, BUT, I had several + and IND lyme-specific bands...how is that negative? That's like going to a bank and withdrawing money and it says you have none, and looking at your statement and there's clearly money in your account....terrible, terribly analogy but I'm having a bad day, so let it slide :). Your LLMD will diagnose you not just on your lab results but clinical findings and past history. You will know if he/she is ILADS trained if you go to the ILADS website and request ILAD MDs in your area, if he/she is on that list, than you know. You can also call your office and ask if they are ILADs trained, that is what I did for my LLMD. My first step would be to find out if they are indeed ILADS trained, if not, perhaps you can find another LLMD and make an appointment ASAP if the current doctor you are seeing is not ILADs trained.
Posted 4/10/2015 5:46 PM (GMT 0)
Hi Wvm!!
Welcome to our community!! I'm so glad you found us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

As for knowing if your doc is ILADS trained or not - just ask them!! If they are, they won't be offended and will understand why you are asking!!

I'm someone that went forward with Lyme treatment even though I didn't test positive for Lyme - and boy am I glad I did!! I'm now healed after having Lyme for over 40 years!!
Posted 4/10/2015 5:47 PM (GMT 0)
Thanks, Dave. I'm hoping that the fact that my doctor knew to send to Igenex is a good sign. He did talk about how horribly inaccurate the tests most doctors give are. We'll see, I guess. I'm a bit anxious--don't know what to hope for, you know? After so many years, I just want something to be definitive. But Lyme is kind of a scary thing for it to be.
Posted 4/10/2015 5:49 PM (GMT 0)
Thanks to you, too, Traveler! I've been trolling about for a while now before I registered. There's some good info on that thread!

Glad to hear you're well--gives me hope!
Posted 4/10/2015 7:27 PM (GMT 0)
Another forum member pointed me to a recent thread here about Lyme in the state of Virginia.
Haven't had a chance to read it carefully but skimming it I saw something to the effect of "there is NO TEST that says a person is negative for Lyme."

I saw a Lyme specialist last month who diagnosed me and one of the first things he said was, "there is no accurate test for Lyme-it's a clinical diagnosis."
Posted 4/10/2015 8:00 PM (GMT 0)
wvmamacharlie, you can also look up Physician Referral on the ILADS website.
http://ilads.org/ilads_media/physician-referral/

But it sounds like you have a good doctor already if he came up with the idea himself!
Posted 4/10/2015 10:34 PM (GMT 0)
Yes. I tested negative according to CDC standards, and positive according to a PCR, which the CDC doesn't recognized. PCRs are used for almost every other illness but Lyme, of course.

I tested positive for Bart., and at one time for Babs., and I think that was through Igenex.

According to Labcorps, which my LLMD uses to avoid costly tests, I was negative for everything, but I'm having severe Bart. symptoms at present.

Margaret
Posted 4/12/2015 9:43 PM (GMT 0)
Yep. Every test came back neg. except band 41, which I guess is common and doesn't meant hat much. I still saw an LLMD who listened to my symptoms and said they were classic lyme, and that he would treat me anyway, which he is. I am now thinking there is probably more than just lyme...maybe a little bart added to it.

I get tired of the doctors around here scoffing when this LLMD's name is mentioned and telling me to not even bring it up. They have no answers but it is disconcerting and unnerving to hear from respected physicians when that is the approach you have chosen.
Posted 4/12/2015 11:45 PM (GMT 0)
As ornery as I am, I've actually said to a couple of docs "Do you think you could do better?" when they have scoffed at my having been in treatment for Lyme at the time or previously.

It was kind of fun and sort of gratifying to watch one stumble around and almost literally fall over his own words - the other one took me very seriously and started trying to help me!!
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