posted
Because of my symptoms I went to see a neurologist who did test me for lyme disease. The test she used cam out negative. I have heard from many who have Chronic Lyme that this happens often, eventhough they really do have Lyme Disease. Can someone please explain to me why this is so? I don't understand.
Posts: 2 | From Laramie, Wyoming | Registered: Nov 2010
| IP: Logged |
posted
The assays (tests) are poor and are more useful for surveillance.
Did they just run the ELISA? This can come back negative because there are many strains of Lyme Disease. Since you are in Wyoming, I think it's logical to say that if you are infected, you may not be infected with the original (B31) strain of Lyme Disease.
Even the honest experts who don't believe in chronic Lyme Disease admit that the ELISA is a very poor screening test.
Recently, scientists completed a genetic blueprint for 13 different strains of Lyme Disease. The actual number of strains may really be in the hundreds. The ELISA is not designed for this. Again, it was designed for surveillance.
Now the western blot isn't good either. The standard kits are designed to detect a few different strains of Lyme I believe. People with a strong case Lyme arthritis are more likely to be positive than someone without Lyme arthritis because they only used Lyme arthritis patients when developing the test. The sensitivity and specificity are skewed since those without Lyme arthritis were left out. People with a strong case of Lyme Arthritis tend to develop a strong antibody response for whatever reason. These people were most likely infected with the B31 strain as well.
It is medically known and medically accepted that seronegative Lyme arthritis exists in Europe. That means that you can get Lyme strains that completely escape detection in Europe.
Also, it is becoming apparent that those with chronic Lyme may develop a rather weak immune response that doesn't seroconvert properly to IgG. Even though a positive IgM response can be diagnostic of Lyme Disease per the CDC, researchers often assume these are false positives rather than studying the patients that don't seroconvert. In my opinion, this is poor science.
It's also becoming apparent that those with chronic Lyme Disease may not develop a strong antibody response because we may be infected with the XMRV retrovirus (see Dr. Burrascano and Dr. Brewer). Dr. Burrascano thinks that possibly 100% of those with chronic Lyme may have XMRV/HGRV. Doctor Brewer's numbers right now are about 90%. This means that people with chronic Lyme may have CFS (or maybe another currently unknown manifestation of XMRV) as well. Research is going on as we speak.
There is a lot more to add, but these are just things I thought of off the top of my head.
That being said, if you had a western blot, you can post your positive bands here. Since western blots aren't perfect interpreting them for Lyme can be more of an art than a science.
If you didn't have a western blot done, you should throw out the ELISA and get that done.
Some labs are better than others. Unfortunately, a western blot through Quest and LabCorp is highly insensitive. Igenex, Stony Brook, or Clongen are better options. If I remember corretly, I think Stony Brook is covered by insurance, but the others are not. Somebody correct me if I am wrong.
In my opinion, the best diagnostic test is a trial of antibiotics. If you get something called a herx and feel terrible (possibly having fever, sweats, weird episodes, pains, anxiety), I think it's likely you are infected. If you think it's side effects, you can try another med. If it does the same thing, you probably weren't experiencing side effects.
Unfortunately, with chronic Lyme, herxes tend to be continuous or cyclical. I think if your load is low enough, you will only experience a herx once a month, and maybe a flare (much less symptoms than a herx) every 2 weeks or so.
Unfortunately, it can take a long time to start feeling better, and one must watch out for yeast infection (candida) as it literally has all the same symptoms as Lyme.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was originally negative on the "standard" lyme test done my by mainstream ENT.
I came out highly positive on an IGENEX western blot (www.igenex.com not your average Western Blot) by my LLMD.
Suggest you find an LLMD ASAP...one that is ILADS trained (www.ilads.org) or go to seeking a doctor on this forum.
Many people test negative because lyme attacks the immune system and therefore you don't produce antibodies which is what the standard tests look for.
You can get well with an LLMD.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I agree with bcb. Get a Lyme Doc and fast. Go post in seeking a doctor about your location and someone will pm you.
Mainstream docs just listen to what they are told by the IDSA and Alan Steere. They don't think for themselves or do the research that proves chronic lyme exists. Good Luck to you.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
There is a lot of political history behind it. Best read the book Cure Unknown to fully understand it.
You are in the "lyme free zone". I live in Montana and am also in the lyme free zone. There are no deer ticks here. I went to six doctors who all told me the same thing, "You can't have lyme disease because it isn't in Montana". Strangely I had never heard of lyme disease and never suggested I had it. I just told them about the tick bite, strange rash and illness that followed.
Meanwhile, less than a mile from the hospital, Rocky Mountain Lab, where the bacteria causing lyme was first discovered, was busy trying to identify the new stain causing a "lyme like" illness transmitted by the wood tick in Montana. None of the doctors connected to the hospital knew about it.
After I diagnosed myself and contacted the state health department, I was told the strain I had would not test so I did not take the tests until after two years of treatment. By then it was CDC positive.
If you have not used abx your body may not be producing antibodies against the bacteria. This is a common reason for false negatives. The Bb bacteria changes it's outer protein coat to hide from the immune system. It becomes a "moving target". That is why many extremely sick people test negative.
The tests are also deliberately insensitive so that fewer infected people test positive. The bar was raised when certain CDC scientists were trying to enforce their theory of the lyme zones. They wanted to prove it did not exist beyond the boundaries they outlined, so they raised the bar until tests in those states failed. It meant more people were failing the test everywhere.
To explain away the tidal wave of sick people, they came up with new conditions such as fibrmyalgia and chronic fatigue, which have no known cause or treatment.
To prove there was no chronic lyme, they divided symptoms into "early manifestation" or active infection, and "late manifestation" or damage without active infection. They ignored all evidence strongly supporting chronic lyme insisting a few weeks of antibiotics eliminated it.
Who knows how many people are actually infected and not receiving proper treatment. It would have disastrous consequences for the CDC to reverse it's stand on lyme and admit that it has denied treatment to hundreds of thousands of people for a disease that in many cases killed them.
The insurance companies don't want it either. The best treatment for lyme is IV and that is expensive. Many of the doctors advocating lyme is an easily cured disease, are consultants with the insurance companies.
So get to a LLMD ASAP!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I am an example of someone who tested negative on the Igenex tests.. I have been ill for over 10 years, possibly longer and IGM showed positive 83-93 band with 2 IND Bands. IGG showed positive 41 and 58 with two IND Bands. Yet both tests were considered negative.
I spoke with Dr. H. at Igenex and he told me I am definitely negative for Lyme. If the president of Igenex believes this what chance do I have the my doctor will want to treat? He already told me "no."
The only thing I can do now, is as Dr. H. suggested and do another follow up 31 Epitope test. So more money for Igenex. Is that a cash grab, or are they being trustworthy?
I spoke with their assistant and they told me their 188 and 189 test is 85% accurate.
It's all so confusing, and I am ready to stick with the herbs and forget the whole testing part of it.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Doctors also don't think of or test for HHV-6 and Coxsackie B.
I recently fell apart in April with significant neurological problems. By this time I was working with 2 good ID doctors. We did catch, via labs, that Coxsackie B was the problem.
posted
Some doctors don't WANT to find out if you have Lyme because if they DID then they would have to TREAT you. A neurologist is not going to treat you for Lyme.
Here is more:
Dr. B's (different Dr B )Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains, 100 in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10. Utilization of host protease instead of microbial protease 11. Spirochete in dormancy phase (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anti-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease 17. Lab tests not standardized for late stage disease 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Because they don't want to.
Because they don't have to.
Because this would turn all their buds and assoc.doc's away from long accepted treatments
for their heart ailments, their endo ailments,
their arthritic ailments, their neuro ailments,
their psychiatric ailments. etc. etc. etc...
In effect they would all have to become Lyme Literate or lose their practices... ------------ http://www.biomedcentral.com/1756-0500/3/273 Published: 1 November 2010 The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia. The latter diagnosis was confirmed by DNA sequencing. -------------------- Finally someone speaks up against the MS Brain Surgeries. Surgery will not kill a bacteria that is causing it.....http://www.ncbi.nlm.nih.gov/pubmed/21041329 2010 Nov;16 Conclusions: We conclude that EVS is an unlikely cause of MS since it is not present in most patients early in the disease and rarely involves more than one extracranial vein. It is likely to be a late secondary phenomenon. ------------ That will cost them....LOL
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
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/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic