posted
Does anyone here got diagnosised lyme but the test are all negative?
Posts: 158 | From pittsburgh | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can one have lyme with negative tests? Absolutely.
However, your tests are not all negative. Many times, you've posted this. You have some positive bands. Even just one positive band can be a clue.
Still, while the CDC criteria is deemed negative, this is still not a negative test. The CDC criteria is not supposed to be used as the tool to diagnose.
If you had a LLMD look at those tests, they would see the positive bands, take your history, discuss symptoms and ask you other questions.
The test is just part of the diagnostic process. And, yes, even with a negative test a person can have active lyme. A test should never be used to rule out lyme. It is a clinical diagnosis.
You state in previous threads that you've been ill for 1 1/2 years. I'm sorry to hear that - and sorry that you don't have a glaring, "yes" or "no" - I'm also sorry that you need to find an expert that is out of the ordinary. But, if this is lyme, there is nothing ordinary about that and it is best (as so many have said so many times before) to get a proper assessment with an ILADS-educated LLMD.
You should also be assessed for other tick-borne infections.
Whether lyme or something else, the fact that you've been ill for a year and a half says a lot. I hope you can find the medical wisdom needed to figure this out but it's going to take work to find a doctor with education. They are few and far between.
Please look at the links posted for you before. Besides the articles and links, we can say little more other than to guide you to a good LLMD who knows about all the chronic stealth infections. (Stealth means, hidden from normal tests, sneaky, dangerous, able to be dormant at times.)
Good luck.
===============
In your past threads (links below to help you find them), be sure to see the explanation by Dr. C regarding the Western Blot. Also, the articles: "Controversy . . ." and "Two Standards of Care" detail the problems of relying on CDC criteria and the faults with that.
Just starting with this thread, you will find reference materials that explain all this:
Chronic Borreliosis Complex and Neuroendocrine System Disorders
- By Carol Fisch, Adjunct Professor Emeritus, Microbiology, Immunology, Parasitology, Proficient in Stealth Pathogens
Excerpt:
. . . A simple explanation of Lyme disease is not possible, as Lyme disease is not a simple disease.
It is not just an infection with Borrelia burgdorferi, the causative agent of Lyme disease. We are dealing with an illness complicated by multiple infectious agents, many of them being immune suppressive.
The immune system has difficulty in detecting the organisms due to multiple factors, pleomorphism (Changing its morphology in order to survive is one of its best tricks).
From the moment it gets into the body, it has the ability to lock itself into our own DNA proteins.
When hit by anything that might threaten, it can go into Cell Wall Deficient (CWD) stages or into the Cyst stage, a very protective stage. An activated immune system, where the body is trying to find an enemy and can't . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Yes, my tests were officially negative and I have lyme.
A lyme diagnosis is based on history and symptoms, not a lab test.
If you have a history and symptoms consistent with lyme, please see a LLMD.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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And while you're on the site, I suggest browsing it a little for its excellent info.
(Keebler - pick up this url for your info packet!)
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Robin,
Merci Beaucoup, mon ami ! That really helps. And it's such an easy-to-read list. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPTS:
. . . A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism) *. . . .
. . . .
- Full article and great photos at link above.
(There is a caution, though, about one thing mentioned here: bismuth - certain forms/methods have since been found to be very dangerous, even deadly. Still, this article has so much value and one of the best explanations of how lyme works.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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