I have had a tick, bulls eye rash and many symptoms. Elisa and Igenex are negative but in the Igenex these occur
**21kDa IND **34kDa IND **39kDa IND
Does anyone know what these mean? My Doc thinks I have either chronic fatigue syndrome or Fibromyalgia but I still have nagging feelings in my soul about Lyme. Thanks
Posted by Lymetoo (Member # 743) on :
Find a doctor who treats Lyme disease full time!! Band 39 is VERY significant. "IND" is a weak positive.
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
Do you know what the treatment is for CFS and FM??? Nothing!!! They treat the symptoms.
Any doctor who will settle on chronic fatigue syndrome or Fibromyalgia and leave it at that should just stop going into work and stop stealing patients' money.
Your test results indicate lyme activity.
LymeToo has good info. to guide you to sources for test interpretation.
But, tests are not the determining factor - although yours are telling. A CDC negative really means nothing.
Good luck. I know this is a lot, but I hope some of this helps clarify.
I'd first see if you can locate an ILADS-educated LLMD for proper diagnostics - and you need evaluation for co-infections.
==========================
This explains WHY it's so important to find a real expert and what LLMD means:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders, 2nd Edition - by Karen Vanderhoof-Forschner (2003)
You can search inside the book and read customer reviews.
-
Posted by disturbedme (Member # 12346) on :
Fibro and CFS usually = lyme.
Posted by Geneal (Member # 10375) on :
Sorry but a tick and a bulls-eye rash is Lyme disease.
Maybe your body isn't posting an antibody response yet...
It takes at least 6 weeks for that to happen.
Also my LLMD has indicated that those sickest are often
Those with the fewest bands....as the body isn't fighting the infection.
Please get yourself to a Tick Borne Disease Specialist.
Your health depends on it.
Adding also that that WB from Igenex certainly looks like Lyme also.
Hugs,
Geneal
Posted by Liz D (Member # 16739) on :
Thankyou to all.. in my gut feeling I dont think I have FM or CFS... nor do I want to go on antipresants as suggested. I appreciate all your feedback and will carry on the battle.
Posted by adamm (Member # 11910) on :
The bullseye means that, without a doubt, you have Lyme.
Rad the burrascano guidelines, get the right treatment (for early
Lyme, 400mg/doxy a day for 3 months past the disappearance
of all symptoms),
make an appt. with an LLMD, and try educating your doc.
And do it NOW--the difference between getting over
it and getting "condemned to life in prison for the chronically ill"
could very well be a matter of only a couple days.
I've found that lymecryme.com and lymeinfo.net are really
great resources...
Posted by Paula 007 (Member # 8002) on :
There is a test called the Bowen QRIBb that your doc should have done. If you were just bitten, your body may not have made antibodies yet.
The QRIBb tests for the actual spirochete load. You even get color pics.
We live in FL, but it is our LLMD in PA that does the Bowen QRIBb. Funny, huh?
Our best to you - the fight to get treatment has impacted most of us, I think.