posted
Today my mom tells me that my Igenex result was a false positive. She read this on the CDC website,
"Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive."
I only had the IGM postive on bands 18, 41, 66, 34, and 83-93.
And now my mom doesn't believe that my test result is an actual positive test. WTF is wrong with the CDC?
Can this truly be a false positive? Everyone around me is doubting I have lyme disease, which is starting to make me doubt it myself.
Posts: 56 | From California | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Please read this post explaining the Western Blot:
It is found under "Quick Links to Popular Topics" and remains near the very top of the "Medical Questions" forum at all times.
You have an extremely positive lyme test with so MANY bands.
As you will read in the above post, this is NOT a false positive. This test shows that your body has made MANY antibodies to the lyme bacteria. That would not happen unless there was lyme in your body. Our immune systems make antibodies in response to specific germs. You obviously have lyme germs.
Did you know that lyme disease is the subject of a huge medical controversy? The CDC is on one side of the controvery and the lyme patients and their doctors are on the other side.
You can tell your mom that the CDC is not in the business of treating people with lyme disease, so that's why they don't know much about the subject. The CDC has never cured anyone of lyme disease. The lyme doctors have cured thousands of us. So, I say the lyme docs have proven that they understand this disease a lot more than the CDC understands it.
Here is a video that was done by a Boston TV station 2 years ago. It explains the lyme disease controversy and interviews many people who got NEGATIVE lyme tests but yet had lyme disease.
This is the real problem with the lyme tests. There are many, many false negatives. There really aren't false positives.
Lots of us have family who believe "the other side" and so think we are crazy or lazy or hypocondriacs rather than people very, very sick with lyme disease.
So sorry this is happening to you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
The CDC is not a reliable source, nor is the CDC reliable as an organization.
Look at Tuskegee as an example. More recently, look at how they handled CFS. They would still be holding onto their lies if the science flood gates didn't open. Now they can't. Oh, and now big name CFS researchers AND research institutes (Such as the Whittemore Peterson Institute) are recognizing chronic Lyme is co-morbid with the CFS retrovirus in around 30% of cases! Good luck to the corrupt "researchers" in maintaining their credibility. They better work real hard to keep those flood gates closed, because I think a major storm is on its way!
They called HIV/AIDS patients psychological as well, but that didn't last long as they started dying en masse.
Lyme misinformation is abundant and really isn't completely the CDC's fault, but I still vote to rename them to "The Center of Disease Proliferation". That seems to fit well if you take a look at their history.
Sorry. I've grown a bit bitter.
You might want to check the websites of some universities that deal with Lyme. Their information is often more accurate even though Lyme politics is still in play in some institutions (such as Harvard).
[ 10-12-2010, 01:11 AM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
the cdc also says 14-21 days of doxy is the cure all to lyme, their idiots.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I can relate, to the mom part. My mom is a RN who worked at Hopkins and the NIH. She thinks I'm nuts
posted
The CDC expects everyone exposed to Bb (lyme ) to have a perfect immune system which in a perfect scenario probably would produce IGG within 2 months. However, I think most of us who are IGM+ are not IGG+ in that time frame.Generally IGG comes closer towards recovery and some of us take awhile for that to happen.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
I am beginning to believe that people with Chronic Lyme may have an underlying immunodeficiency.
When you treat someone with chronic Lyme, their positive IgM can clear, and their western blot often goes blank. If you stop treating, you can see an IgM response return. False positive? Don't think so.
I honestly think that XMRV and/or MLV viruaes are causing the immunodeficiency. There wasn't Chronic Epstein Barr Virus (mono) before 1985, and this seems to be most likely caused by the presence of this retrovirus.
Was there complaints of chronic persistent Lyme in humans (despite antibiotic treatment) before 1985? Of course there wasn't too many identified cases at this time, but I am still curious.
And testing is fun, but I think the best way to identify if you have chronic Lyme or not is if you herx from antibiotics. Of course, it's possible to confuse a side effect or even an allergic reaction as a herx. But if multiple antibiotics are giving you the same unpleasant herx symptoms, I think that makes it obvious.
I think many will never believe in chronic Lyme until they experience the terrible consequences themselves, or until the government says it's real. Sad, but true.
If you look at history, in the end patients are usually right, and the "experts" are usually wrong or misguided. The true experts are the patients.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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I have heard that they are far more dangerous and could be more deadly than Lyme!
Some of the co-infections are Bartonella and Babesia. There may be a list of them here, or on the www.ilads.org
Most are treated for the co-infections first and once those are cleared up, then we are treated for Lyme.
I was treated for Bartonella first! What a huge improvement with some of my symptoms! I saw some symptoms resolve and never return.
Now I am being treated for Babesia. There are so many strains of Babesia that it makes it tough to test positive for this.
But , I sure had the symptoms and signs of Babesia. I was always drenched in sweat! All over my body! I had to wear special clothes when I went out so that people wouldn't think that I had peed myself or something like that.
That symptom too resolved within a month of treatment, but I am still treating Babesia and slowly treating Lyme.
This is a VERY COMPLEX illness. You need a specially trained Lyme Literate Medical Doctor who has been specially trained!
My daughter had NO positive bands whatsoever!!
But she was positive on the Plasmid test which indicates the DNA of the Borrellia is present.
She is also being treated for Babesia to be on the safe side. We are already seeing improvement within 3 months!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
That's a positive test, not a false positive. You have Lyme Disease. It's unfortunate. Your mother might want to get on the train early and actually be helpful because, it's definitely Lyme.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Oh and as for the doubt part -- I went through it too. I find it almost humiliating that I ever let anyone lead me to believe that I couldn't trust my own body and instincts.
Trust yourself, you've got Lyme.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
From the May 2007 issue of Clinical Advisor, a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Excerpts:
`` . . . Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
* 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. . . . ------
- Be sure to read the full article as it discusses the sharp differences between CDC / IDSA and ILADS' understanding of borrelia.
- Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.
- by Michael D. Parent (2010)
- 82 pages
* This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy. The abstracts are available on U.S. Government's Public Medical Database [pubmed.gov] -
PERSISTING ATYPICAL and CYSTIC FORMS of BORRELIA BURGDORFERI and LOCAL INFLAMMATION in LYME NEUROBORRELIOSIS
Abstract Excerpts:
Background
The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis.
. . .
Conclusion
The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis.
The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis.
The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
===============================
Syphilis has 23 genes where Lyme has over 250.
Borrelia can also insert its DNA into that of a host. Mitochrondial damage is another whole topic.
GiGi Posted this From Scott's notes of 2009 Lyme Conference:
Dr. K believes that comparing Lyme disease to syphilis is misleading.
** Syphilis has 23 genes where Lyme has over 250. **
It is like comparing "cabbage with a dog". Borrelia is a far more evolved organism.
He posed the question, "What if these bugs could exchange their DNA such that the gene responsible for producing a certain toxin was transferred to harmless bacteria in the oral cavity or in normal gut flora."
It becomes clear that these microbes are highly intelligent.
(GiGi / Scott) ----------------
The original quote is probably at one of these two sites:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would never doubt myself if others around are uneducated about something I am experiencing and have studied the work of experts in the field, to great extent.
It is sad, of course, that others are so quick to go with the criminally negligent CDC and IDSA, however, you don't have to fall from that sword.
Education is the key.
Have your mom (and others) follow this weekend's ILADS conference. Rather than you crawling into a whole and getting worse (or worse - yes, lyme can be fatal), pretending that everyone who is ignorant about lyme must have the final word, becoming better educated is the better way to move forward.
"Ignorant" here is not at all used as an insult (really, it is not) but a true description of those who are not educated to the full extent regarding what borreliosis can do, of the science of it all, of all the researchers who are working to expand our understanding.
For a full view, so that we all may grow in knowledge:
ILADS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Shedding more light regarding the complexity of lyme:
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section)
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST -
Posts: 48021 | From Tree House | Registered: Jul 2007
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onbam
Unregistered
posted
Unless you have syphilis, rat-bite fever, or something else for which you'll the same treatment you'll need for Lyme, don't expect a false positive.
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quote:Originally posted by jessrunner: Thanks everybody for the information.
I was just afraid to start treatment, and this ends up being a false positive.
Well contrary to popular belief, a positive IgM may be more likely with chronic Lyme Disease.
Some have both a positive and IgG and IgM, but for the most part, I believe something is inhibiting proper IgG seroconversion in a certain subset of Lyme patients. Unfortunately, this isn't really discussed much in medical literature (except for some researchers claiming these IgM responses false positives), but hopefully it will be acknowledged in the future. Lyme doesn't always behave like most bacterial infections. I just think it's not yet medically known why patients don't develop a proper IgG response like nearly every other bacterial infection.
Since many researchers don't understand why patients don't seroconvert to IgG, they ASSUME that it is a false positive rather than perusing further investigation (such as blood cultures, tissue cultures, etc). I find veterinary medical journals better and more useful since there aren't politics, conflicts of interest, and an abundance of opinions skewing scientific integrity.
My 2 cents.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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