crap! why do I have over 60 lyme symptoms and it's negative?

Hi, I'm new here, but I've been down this road. Quite a bit of my WB from Igenex was negative even though I had a ton of symptoms. Symptoms are to be used to make a diagnosis not the test; the test is used as a back up of the diagnosis. I just tested positive by CDC standards after 4 years of antibiotic treatment. That happens sometimes & the doctors aren't quite sure why.

It's good to have a positive test if you don't have a Lyme Literate Physician; however, any doctor who knows about the disease & how to treat it will not consider your test results since you have so many of the symptoms.

If you don't have a Lyme Literate Medical Doctor (LLMD), you should try to find one. It might be necessary for you to travel many hours to find one & be treated, but it's worth the hassle.

IF you do have Lyme disease; the longer you go without treatment the further "downhill" you'll go.

You can also use your browser to search for information about your negative test results; there are reasons why this happens. If you use the search term "reasons for false negative test results lyme" that should get you several hits. I always use the term "lyme" to help narrow the search to the area I need to look.

I hope this helps! Ruth H

thank you...

yes, I do have llmd... he takes my insurance... he's not the best. I go friday, and I'll see what he says.... if he refuses to treat me on symptoms, because he is tied down with the ins. company, I will have to just keep my search....

I am going to a naturopath this afternoon, so hopefully she might be able to tell me something that all these other docs can't.

j

You know that you have Lyme...you have the symptoms. You have the history. Remember, just a few weeks ago when my first Igenex test was inconclusive? I had the bullseye rash in the late 90's. I had the fibro, the neuropathy, neurological problems and musculoskeletal issues. I lost my gallbladder - it was filled lots of tiny stones that were traveling through the biliary tree. A seizure. A 20 on my CD57. All evidence of Lyme. My LLMD and I are positive that I have it - the only thing I can't do is get my PICC line and start getting Rocephin. But I can have all the oral abx I need.

What the LLMDs do is report to the insurance company that you have something else - acne, etc. Whatever antibiotics are necessary for. I was bummed when I got my results, too, but I never doubted that I had Lyme. I just didn't want the restrictions - I wanted to get IV antiobiotics. I didn't want to have to pay $190 again, however many times, and I didn't know if the coinfections tests would also come back negative too (and they are way too expensive to get more than once). I wanted to be able to send the test results to the doctor who told me that I could not get Lyme in Michigan!!!

If you really believe that you do not have it, please read Reasons for False Negative (Seronegative) Test Results in Lyme Disease, From the Lyme Disease Foundation and the Lyme Alliance, http://www.anapsid.org/lyme/lymeseroneg.html.

Lori

Anyway, Jamie, if you can get oral abx through your ins. co. then that's the way you need to go. My past LLMD, I have a new one now, said there are enough orals on the market that it's not necessary to go straight to IV's quickly.

Also, is your ins.co. giving you a hard time about the bills because of your diagnosis? If so, you might need to send them a letter along with a written/detailed list of your symptoms & what Lyme is all about.

I thought I would have to do that, but as luck had it, another Lymie I was in contact with had the same ins.co. as I do & she had to submit a letter. They finally relented & covered her & when I got up the nerve to submit my bills to the co they covered me without question. I didn't have to contact them at all; the other gal cleared the way for me. However; she sent me copies of everything she had sent them & it was the info I listed above.

Just a thought. Ruth

I did go to the naturopath yesterday, she also said I don't have lyme...but severe mold issues.... I didn't realize how bad an allergy to mold could be...and basically everything I eat is killing me... BUT, I don't buy into that completley....I'm sure it could be part of it...but then why in just the past few years have I gone downhill so fast...and now especially after having those stupid steroid injections.... so onward and upwards.....

so far my ins. co hasn't said anything... although they did refuse to cover provigil for the fatigue.... I guess have 60 things wrong with you just isn't enough...you MUST be narcoleptic....

I'll post when I hear what llmd has to say tomorrow.

IF your LLMD says you cant have it because your test is negative,,,you dont have a LLMD,,,you have a "DUCK",,,

leave him in a heartbeat and research WHO is a true blue LLMD and treats like one,,,then go,even if its a far travel.

Travel distance and time mean nothing,,,compared with staying SICK!!!

That natural path you saw may have a point,,,but not know lyme either. IF you ever go back there ask this--"How many lyme patients do you treat,presently?" "Ever?"

If the answer is none, your barking up a dead tree!!

Hope all looks up for you,,,it is miserable to be so sick!!me--just don--