I have been very sick for many years and had a positive Elisa test in July of this year (I get ticks all the time) but my Western Blot IgG & IgM is negative completely. I was tested a month after starting treatment. My spinal taps and MRIs are normal. I am wondering what people here think about my case.
My symptoms are: tremors/severe shaking fever vomiting chronic diarrhea (for years) intestinal adhesions (surgically repaired) ringing in ears trouble hearing severe allergies endometriosis IBD seeing spots blurred vision stabbing pains in all joints- even small joints sensations of having been burned tingling and numbness slurred speech bloody urine chest pains chronic congestion dizziness anxiety and panic attacks chronic fatigue stiffness and PAIN cognitive problems migraines inability to move limbs for short periods of time weakness twitching thyroiditis bloat abnormal heart rhythms itchy skin
I herx on meds. My regular doctors say my lyme is cured. My LLMD is continuing treatment but is under investigation so I am scared of losing him. I am taking Biaxin, Soma- for sleep, Nystatin, Levothyroxine, and Paxil.
What do you all thinks of the test results?
Thanks for your advice!
Posts: 35 | From Minneapolis, MN | Registered: Aug 2008
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posted
What lab did your Western Blot? Can you post the actual results for us?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think the labs are all inaccurate. Even Igenex is not 100% accurate. A good LLMD will diagnose you clinically and that is all you need.
My first WB was all negative and after 3 months of treatment I now have one band IGM 41 positive.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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just says insufficient number of bands for positive result. it doesn't list them individually.
Posts: 35 | From Minneapolis, MN | Registered: Aug 2008
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posted
If you really have all those symptoms then you are sure sick with something. If the docs don't think it is Lyme and co-infections, then what do they think you have?
If you have not been tested for coinfections then I would suggest you get a bloodslide from Fry Labs.
Some of your symptoms could be from Babesia (blood in the urine, dizziness) or Bartonella (intestinal adhesions).
I would be very surprised if you only have Lyme. Most people as sick as you are also have coinfections. And unfortunately each different infection takes a different set of antibiotics.
If you have ruled out other possible infectious causes of your illness, then I would ignore the negative test results. The antibiotics you have taken may have affected the test result. Also the longer one has been sick then the less likely it is to get a positive test in my opinion.
You do know you were bitten by as tick which definitely makes Lyme and coinfections a big possibility.
Lab Corp is not a very reliable test for Lyme. IGeneX is more likely to provide positive test results, but if money is an issue I would do the Fry test instead. Much more important to find out if you also have coinfections.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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See..when you say that your WB were completely negative, you really don't know that because it didn't list any of the bands.
You could have numerous positive bands and still be considered "negative". They only count certain bands and ignore the rest when it comes to saying "positive" or "negative".
I would get an IgeneX test and see what you really have going on. I have a lot of the same symptoms that you have...I agree about looking into co-infections also.
quote:Originally posted by soonermom: See..when you say that your WB were completely negative, you really don't know that because it didn't list any of the bands.
You could have numerous positive bands and still be considered "negative". They only count certain bands and ignore the rest when it comes to saying "positive" or "negative".
I would get an IgeneX test and see what you really have going on. I have a lot of the same symptoms that you have...I agree about looking into co-infections also.
quote:Originally posted by soonermom: See..when you say that your WB were completely negative, you really don't know that because it didn't list any of the bands.
You could have numerous positive bands and still be considered "negative". They only count certain bands and ignore the rest when it comes to saying "positive" or "negative".
I would get an IgeneX test and see what you really have going on. I have a lot of the same symptoms that you have...I agree about looking into co-infections also.
PS... You had a positive ELISA... that says a LOT! The ELISA is known for its false NEGATIVES.
A positive ELISA acutally means next to nothing. It is purely meant as a screening test (designed to have a high sensitivity and low specificity). That is why all positives are confirmed with a WB. We can argue all we want about the quality of lyme disease testing. And, I don't think that an ELISA has any significant meaning at all. But, please don't give anyone the impression that a ELISA (with incredibly low specificity) is indicative of lyme when the WB is negative, because that is just not accurate!
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
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quote:Originally posted by Lymetoo: "Jesse" .. you must be related to "TheTruth"
Is that meant to be a compliment or a negative? I don't know who "TheTruth" is, but stand by my statement. If you feel differently, then that is your right.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
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quote:seibertneurolyme: If you really have all those symptoms then you are sure sick with something. If the docs don't think it is Lyme and co-infections, then what do they think you have?
My regular doctors say I have fibromyalgia, endometriosis, IBD, thyroid disease, and psychosomatic issues.
The endometriosis has since been backburnered since my surgery showed no evidence of it.
I was accused of drinking too much when my speech was slurred (I do not drink).
And I love the fibromyalgia diagnosis- that is like going to the doctor and saying you have pain and him/her diagnosing you with ... pain.
I have wonderful doctors, but I just get frustrated.
I do get ticks quite frequently.
I just can't get a straight answer from anyone other than my LLMD, and he has helped me tremendously.
One ER doctor I saw was suspicious of MS but couldn't confirm it.
My chiropractor was the one who told me to demand a lyme test. I had to beg for that Elisa. When it was positive, and I was started on Doxy, my regular doctor took me off of it when I started herxing because she thought I was having an adverse reaction to the drug.
My new LLMD put me on Biaxin, which made me just as sick as the Doxy, but I am convinced I have to kill the bugs before I end up in a wheelchair.
I have noticed improvement on my good days since prior to treatment, but my bad days are bad.
Posts: 35 | From Minneapolis, MN | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You had a positive ELISA with symptoms that are very much symptoms of lyme disease.
A negative WB test (while on abx), a negative MRI or a negative spinal tap still mean very little if a patient is experiencing severe neurological symptoms. None of this can rule out lyme or other TBD (tick-borne disease).
You also have to consider where the WB was done and if you were in abx treatment, the tests simply may not be accurate. You cannot test lyme along the way as you can other infections. It does not work that way.
ADD top that other chronic stealth infections to consider such at Cpn and HHV-6.
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
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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