Hi somegirl -
Welcome to the forum! I see you've already posted 5 times so I'm sure others have shared with you the
location of a lot of good info on Lyme for those starting out - the "New to Lyme?" thread at the top of the page. It has a post in there that explains a little bit about
the testing if you'd like more info. And I'm sure others will be along to share their thoughts.
The CDC recommends a two-tiered testing methodology for Lyme. The first test is an assay test, which generally indicates whether or not your immune system is busy fighting something, but is not always specific for Lyme. That's why they give the Western Blot to follow up, if the first test is positive.
Now, there are MANY, many problems with this two-tiered testing process, which I shared below.
You might understand my next statement a little better after reading about
the tests below - but you should also know that you are LUCKY that your IFA test was positive. Most IFA and ELISA tests are inaccurately negative. Otherwise, if it had been negative, your MD would likely not have bothered with giving you the 2nd test - the WB. Although MDs will say it does,
a negative IFA does NOT rule out Lyme, at all. This is one of the dangerous problems with these highly inaccurate tests and MDs who are also pretty uneducated (or disinformed) about
Lyme and testing. More info about
this below.
Now, in your case, even though you had the WB your WB results were not all that helpful.
You can read a lot online about
Band 41 but it is kind of tricky. It can cross-react with other infections including Lyme, so it doesn't always point to Lyme. Your WB results would be more helpful if you also reacted to other bands.
The fact that you did not react to other bands as well as 41 does NOT mean you do not have Lyme. The test probably stated you were "CDC-negative", but since the tests are usually inaccurate, you need more info. Literally, the CDC's testing protocol has been found to claim people were negative for Lyme when they were actually positive for Lyme appx 50-70+% of the time. That is HIGHLY inaccurate.
If your MD is a good LLMD, he/she might do one or two things:
- retest you with an IGeneX Western Blot (if your WB was a regular WB), which is a more accurate WB test. Or you can do your own IGeneX test if you like (info below);
- he/she can provoke a stronger immune response before retesting you - by having you take an immune booster like Olive Leaf Extract. Usually, it's necessary to do this for 4-6 wks before retesting;
- and/or he/she will
clinically diagnose you using your medical history, exposure, and symptomology. Due to their inaccuracies, the serology tests for Lyme, like those you took, need to be augmented with other information in order for MDs to properly diagnose you. Even the CDC recommends MDs clinically diagnose patients, not use the tests solely for diagnosis,.
I share more info about
the tests and why they are so inaccurate below - FYI. It might be very helpful for you to understand this before you talk w/ your LLMD about
your results - so that you can ask questions and get more info and also, know what info to provide to help him/her with a clinical diagnosis.
Another thing I would recommend, unless you have already shared this info with the MD is to fill out a symptom list and bring this info to your LLMD. Better yet, send it before your appt so they have time to review:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789THE TESTS
So - here is info about
these tests, if you're interested. It can be a little confusing so don't hesitate to ask questions - we have a lot of very knowledgeable members here who have been down the very same road you are traveling:
CDC's Lyme Case SurveillanceThe CDC wants the medical industry to follow its CASE SURVEILLANCE DEFINITION METHODOLOGY for testing for Lyme disease (the two tests you took) and offers no other approved means for testing. This is problematic on many levels as the tests have been studied to be about
50% reliable (although a new study showed them to be 79% ineffective... think about
that!) The CDC reports that
Lyme is the fastest-growing infectious disease. Yet, find ANY other infectious disease where the tests promoted by the CDC are 50% reliable.
The fundamental problem with the CDC's testing methodology is that it was NOT created to be a diagnostic methodology:CDC’s CASE DEFINITION METHODOLOGY relies on a two-tiered decision tree or screening process that serves its disease-tracking purposes. So, it's designed to capture very specific and identical cases of the Lyme microbe infection; it was not designed to capture ALL cases. Therefore, the methodology MDs are told to follow and the criteria the CDC uses for interpreting the results are very strict. Again, the purpose of the surveillance process is to find the similar cases - not find all the cases. Obviously, this leaves a lot of Lyme cases undetected... in fact, most cases of Lyme do NOT fit this criteria and will not test positive on these CDC tests.
Even the CDC clearly states on their website (albeit pretty-well hidden for some reason) that the tests should not be used solely to diagnose but that Lyme is a clinical diagnosis. Some states have required labs to put this disclaimer on the test results, too... but MDs still use them solely to diagnose (likely because they are ill-informed and also unqualified to clinically diagnose).
www.cdc.gov/lyme/healthcare/clinician_twotier.htmlIF YOUR MD TELLS YOU YOU DO NOT HAVE LYME BASED SOLELY ON A NEGATIVE TEST, POINT OUT THE CDC'S STATEMENT about A CLINICAL DIAGNOSIS (or better yet, find a better or Lyme-specific MD).
Here is more info about
why the tests are so bad you can share:
22 Reasons tests are wrong:
whatislyme.com/22-reasons-why-your-lyme-test-may-be-wrong/And this is why you might want to ask for an IGeneX WB if you didn't get one:
IGeneX processes over 20,000 Lyme tests a year, and can adhere to a more specialized structure than the CDC regulations. IGeneX includes band 31 in their testing, and also offers 30-31kDa confirmation-these bands are often positive due to cross-reactivity with other viruses, and IGeneX uses highly specific recombination antigens to validate results. In addition, IgG needs only 2 bands present (instead of 5), and the IgM needs 2 (like the Western Blot).
SO...
What is this two-tiered testing? - 1st tier test ELISA (Enzyme-linked Immunosorbent Assay) or IFA is to be followed by a confirmatory 2nd tier test Western Blot (immunoblot). These are both serology tests that rely on detecting antibodies produced by a healthy immune system. However, over 200 studies confirm that the Borrelia microbe can and does disable the body's immune response, which is one primary reason the tests are unreliable.
- So, the CDC recommends MDs start with the 1st tier ELISA or IFA test, which is a very general test intended to detect general immune activity (looks for a collection of the B31 strain antibodies), not a response to a specific infection. The theory employed by the CDC is intended reduce ‘false positives’ since the ELISA/IFA can show positive reaction to antibodies associated in people previously vaccinated for LD.
(Virginia Governor Bob McDonnell and Secretary of Health and Human Resources 2011 Lyme Disease Task Force Report)www.cga.ct.gov/2012/rpt/2012-R-0149.htm(Molloy, Berardi, Persing, Sigal Detection of Multiple Reactive Protein Species by Immunoblotting after Recumbant Outer Surface Protein A Lyme Disease Vaccination)
m.cid.oxfordjournals.org/content/31/1/42.full - MDs are told that if the first tier (ELISA) is negative, that the patient doesn't have Lyme and move on to a more appropriate diagnosis. In 30+ years, the CDC and the IDSA have failed to adequately explain this methodology, given the hundreds of studies that prove Lyme can disrupt immune function and the CDC's tests are only 50% accurate. Here is a study that shows the tests are as much as 75% inaccurate--share this w/ your MD if you need to:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC5391870/ - Knowledgeable MDs and LLMDs know to ignore the CDC's methodology (although some still test first w/ ELISA due to insurance demands) and follow up with Western Blot, ESPECIALLY if the ELISA is negative. That's how I got my WB CDC-postitive result - my ELISA was negative.
- The WB is more specific for Lyme so it looks for more evidence that the immune system has responded to it, looks for more antibodies. Now, some people still won't develop enough antibodies to produce a positive test - in fact, it's pretty well known that the sickest people often produce negative tests. However, the CDC has created such strict criteria for the WB, that half the time it produces false negative results. Again, the criteria is geared toward Surveillance data purposes to detect cases that are similar to each other---but often leave out all the other manifestations of the Bb microbe. This is also where people fall through the (ginormous) crack.
Also -
Despite the irrefutable fact that Bb can deactivate the immune response, CDC SURVEILLANCE CASE DEFINITION criteria includes specific requirements for an immune response to a minimum number of certain WB "bands".
Again, this
“qualifying bands” criteria for the two-tiered testing methodology is intended for surveillance purposes, only, and was not intended to be utilized in confirming the presence of the infection for effective diagnostics purposes. But the CDC promotes it and MDs use it anyway. There are three primary ways the WB can be interpreted incorrectly by MDs:
- 1) Most MDs order both IgG and IgM tests. IgG typically indicate old antibodies (older infection) and the IgM typically indicates new antibodies (newer or reactivated infection). But these rules also generally don't apply in the world of Lyme since it's broadly understood that Bb can disrupt normal immune function, these distinctions aren't helpful. Regardless, an MD will tell people who are CDC-positive for IgG that it's an old infection and the immune system has already taken care of it, evidenced by the old antibodies so their current sx cannot be caused by Lyme. "You don't have Lyme".
- 2) The strict interpretation criteria requires reaction to a minimum of 5 specific IgG bands and 2 specific IgM bands. Some of these bands can be cross-reactions of different infections but some are Lyme-specific bands. Generally, if you react to a Lyme-specific band, it's a positive test result, regardless if you reacted to all of the CDC's list of 5 and 2 bands. You can't be sorta pregnant. This is yet another reason for the inaccurate results where MDs tell patients they don't have Lyme because they didn't react to enough bands.
- 3) Additionally, two specific Borrelia components/DNA (OspA or outer surface protein A) were used to create two early vaccines developed in the 80s. Subsequently, the CDC and IDSA REMOVED the OspA bands 31 and 34 from the possible Lyme-specific bands the body can react to in order to avoid cross-reaction by those who received the vaccine. I really can't explain why they did this - it's non-sensical and yet another reason for the inaccurate results and abundance of false negative results. This is also why it's recommended to use an IGeneX WB test which includes the 31 and 34 bands in the results and why the IGeneX is more reliable (it also has a more accurate lab process). You can read more about
it on their website.
Here's more info about
these two bands and what happened in the Dearborn meeting:
"Prior to a 1994 NIH hearing to develop conformity amongst labs, every lab accepted bands 25, 31, and 34 as Lyme-specific and significant in diagnoses. Without any clear reasoning, the NIH disqualified those bands from being reportable. The result was that what had been a fair good test had now become poor or even useless."
(1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.)When the CDC developed its surveillance case definition it included specific requirements for certain "bands" to be present on the confirmatory western blot. However, two “Lyme-specific” bands (kDa 31 and 34, or osp—outer surface proteins—A & B) were excluded. Why? These bands are so specific for LD that they were used for vaccine development. They removed them from the testing criteria otherwise people who had been vaccinated would all be positive for those bands and falsely positive on tests.
www.lymeneteurope.org/info/the-complexities-of-lyme-disease Because the CDC eliminated the two bands from their qualifying list of “CDC-positive” bands, some people who DO have lyme and have a reaction to those bands (yet were never administered the vaccination) yet lack reaction to enough bands will be considered “negative” for LD. Not only were the vaccinations unsuccessful, the venture now leaves the primary testing methodologies without lyme-specific bands, which would help test accuracy.
Western BlotsA misconception about
Western Blots is that they have as many false positives as false negatives. This is not true. False positives are rare. The conclusion of researchers was on this issue was: "the proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children."
1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.)The table mid-page of this article by the leading LD organization indicates the frequency of “false positives” (high specificity) and “false negatives (low sensitivity) – the two-tiered testing misses 44% of positive cases:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/A fundamental problem with the CDC's serology tests is that they look for evidence of the immune function's response to the Borrelia burgdorferi microbe. However, over 200 studies show that Bb can disable the immune response once the microbe is in the body. Over 700 articles support these findings:No serological test can rule out LD and LD cannot be adequately diagnosed by serology alone. Studies show potent immune suppression induced by Borrelia, which interferes with an appropriate immune response by design so most people don’t produce enough antibodies for the tests to register.
(Elsner RA, Hastey CJ, Olsen KJ, Baumgarth N (2015) Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection. PLoS Pathog 11(7): e1004976. doi:10.1371/journal.ppat.1004976) journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976If this spirochete is evolved enough to attack our B-lymphocytes, then it may also be evolved in other ways that we do not yet understand. It is for certain that its ability to kill B-lymphocytes evolved as part of a defense mechanism to evade its own destruction. The observation that it can use the B-cell's own membrane as camouflage indicates that it may be able to go undetected by our immune system. The way our immune system is supposed to work is that it recognizes foreign invaders as being different from self, and attacks the infection.
(The Complexities of Lyme Disease: A Microbiology Tutorial: Part 1, By Thomas M. Grier, MS, Excerpt from the Lyme Disease Survival Manual 1997.)www.lymeneteurope.org/info/the-complexities-of-lyme-diseaseThe structure of the Lyme spirochete is unlike any other bacteria that has ever been studied before. Spirochetes have an extra layer of glyco-proteins may act like a stealthy coat of armor that protects and hides the bacteria from the immune system. The human immune system uses proteins that are on the surface of the bacteria as markers, and sends attacking antibodies and killer T-cells to those markers, called outer surface protein antigens (OSP antigens). This nearly invisible layer is rarely seen in washed cultures, but can be seen regularly in tissue biopsies.
(Sigal LH, Tatu AH. Lyme Disease patient's serum contains LgM antibodies to Borrelia burgdorferi that cross react with neuronal antigens. Neurology 1988;38:1439-1442)www.lymeneteurope.org/info/the-complexities-of-lyme-diseaseHope this is helpful - if not, just keep asking q's!
-p
Post Edited (Pirouette) : 9/22/2017 6:25:23 PM (GMT-6)