posted
I recently got dx via Igenix tests as Lyme positive.
On my IGM, my 31 band was crazy positive, ++++ and I had one + for 41 and one for 83-93. So that was CDC negative.
I think I read in Cure Unknown that once people start on abx it often "lights up" their Western Blots.
I've been on 200mg doxy per day for over a month now. I'm thinking about getting restested via Quest or another traditional lab and seeing if it comes out CDC positive.
For treatment options and friends and family, I would like to confirm the dx....will the doxy help in showing more bands on a traditional WB?
How does that work?
Thanks...
Posts: 55 | From New York | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
My opinion...
I'd give them the book to read rather than having more tests.
Test can not, have never... and most likely in the future will not be conclusive.
You've already started antibiotics.. which can negatively affect any test. Yes, it can do the opposite... but I wouldn't chance it if trying to prove a point... because...
If it is negative... you are sunk. Out the window with your view point... case closed.. party is over.
Also.. why risk insurance having TWO negative tests on your record? If you depend on them for treatment.. I'd leave it alone.
Plus.. if you get a positive.... your "friends" (might want to examine that issue if they don't believe you)... could do what the ducks do...
And claim it is a false positive. They can certainly find enough literature to back them up on that point too. True or not.
If you STILL want a test run.. maybe send the $$ for a test to Dr. Jones so some of the sick children can get one.
You can tell your friends that you would rather the kids have a test than trying to prove to them you are sick.
posted
Yeah, I think you're right. Despite all I know about Lyme, I still have this idea in the back of my mind that I want to join the "legitimate" Lyme patients.
I wish there weren't so many aspects of this disease that were so controversial, but hey, I guess that's just the way the cookie crumbles.
Speaking of Dr. J, wasn't there some kind of hearing yesterday? I haven't seen any updates on the "activism" board.
I have never seen him, but have admired him from what I've read/heard.
Posts: 55 | From New York | Registered: Nov 2008
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I know exactly how you feel about wanting to be CDC positive to prove to everyone - doctors, friends, family - that yes I really am sick. I want them to take this as seriously as they would cancer or something. Unfortunatley that hasn't happened. I am Igenix positive, being treated, and I am improving.
It is a burden all of us share. The world is unkind to people with diseases that can't be seen and that the medical profession doesn't get.
I like to think that eventually others won't have to suffer what we have suffered.
Focus on you and getting better.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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I know exactly how you feel. I wanted to do the same thing but soon realized it won't change my family much.
1/2 my family has read "Cure on Known" and they are the ones who suggested I give it to the rest of my family.
The 1/2 that read the book and are the ones who actually told me about the book are the ones who have taken me serious from the begining.
I don't know how the other half will react but it's less money than the tests.
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You do not need more tests for lyme (but maybe for other coinfections - has your doctor checked those?).
Other people need to become educated in this. Give them "Cure Unknown" and the film, "Under Our Skin"
- but even if others do not understand, that will not change things.
Most other labs are also ineffective with less than the best test procedures. They don't do the right test, checking all the bands, and they use faulty methods. Chances are such a test from an inferior lab will make it impossible for you EVER to receive the treatment you will need.
Repeat: you do not need another test. Once treatment begins, lyme testing is not advised as it cannot be tested along the way as some other infections.
You might want to see the DVDs of the past ILADS seminars (you can get through the LDA - link to the left).
You have nothing to prove to anyone. Facts are facts. You are dealing with an illness and they can either understand and be with you or they can miss out on this part of your life. You have nothing to prove. They can step up to the plate or not and, as painful as that may be, trying to repeat the tests at other labs will actually put your life in jeopardy.
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, containing MUCH more detailed information.
-===
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.
posted
I have really studied Dr. C's WB explanation and that's why I'm positive I do have Lyme disease. Cause of band 31.
Also the whole part in Cure Unknown about the Lyme vaccine being made of the OsPa protein which is why they omitted it.
Its so frustrating! With that kind of positivity, I feel like I probably have been infected for years without knowing it.
Oh well. We have to make peace with these things, I think. So I'm making peace.
Posts: 55 | From New York | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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One thing you said just came back to me: " . . .I've been on 200mg doxy per day for over a month now. . . ." end quote.
--------
Are you seeing a LLMD? I checked some of your previous posts and see that you have all that information and all the lyme treatment protocol links so I'll not post any of that.
My concern is that the dose is low and it is monotherapy. Single Rx treatment is never used by ILADS educated LLMDs. Combination treatment is required.
So, unless your doctor has a plan to take you to other meds to address the other forms of lyme (cyst, etc.) my concern is that you are getting undertreated.
Some doctors do start slower and lower to prevent a herx but be sure to know what your doctor's plan is and if he is ILADS-read.
That does mean he could not vary treatment some for your individual circumstances but, at least, he would KNOW all about lyme and coinfections and the intricate treatments needed.
Doxy, alone, will cause spirochetes to go into cyst form. This will NOT show on any tests and can emerge back into spirochetes at some time in the future. Flagyl - or a similar RX - is required for this form.
Are you maybe taking grapefruit seed extract or anything else that might be addressing the cyst form? It is vital to consider this with any treatment protocol.
J Neuroinflammation. 2008; 5: 40. Published online 2008 September 25. doi: 10.1186/1742-2094-5-40. PMCID: PMC2564911 Copyright � 2008 Miklossy et al; licensee BioMed Central Ltd.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Judith Miklossy,1 Sandor Kasas,2 Anne D Zurn,3 Sherman McCall,4 Sheng Yu,1 and Patrick L McGeer1
Excerpt:
. . .
Conclusion
. . .
Our results suggest that pleomorphic forms, including cystic forms of Borrelia burgdorferi may persist in the brain and may explain the long latent stage and persisting infection in Lyme neuroborreliosis.
The identification of these extra- or intracellular atypical, cystic and granular forms of Borrelia burgdorferi is essential for the histopathological diagnosis of Lyme disease as they may indicate chronic Borrelia infection, even in cases where the typical coiled spirochetes are apparently absent.
In analogy to Treponema pallidum, Borrelia burgdorferi can persist in the brain in Lyme neuroborreliosis and may initiate and sustain chronic inflammation and tissue damage.
- Full article at link above - and some great photos, too.
===================================
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
All this is good information to share with friends and family but, again, you do not have to prove anything. You are simply sharing information if they are interested.
Take care, now.
--==========
The first article has much attention on both lyme and Cpn:
Thinking about it, but am very comfortable with my current doctor who is an integrative doc understands the perils and pitfalls, misdiagnoses, and controversy regarding Lyme.
She is the one who is treating me with doxy.
But you're probably right. I'm scared to go on more abx, a little bit which is why I have put off seeing an LLMD. Also, the costs are prohibitive.
The whole thing is nervewracking! Partly I want the positive WB to prove to MYSELF that I have Lyme disease.
Even though I am positive I do, there is that scary part of me that wants to just trust the mainstream docs out there....funny how our minds work, right?
I suppose part of the motivation would just be because I would rather NOT have Lyme disease. Who would want this icky illness?
Anyway, thanks for the recs.
Posts: 55 | From New York | Registered: Nov 2008
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posted
Whoa. I just read Dr. C's WB again....83/93 is the DNA of the Bb!?! Is that right?
Also, this might sound like a stupid question, but what is an antigen?
I was paying so much attention to band 31, I never would have thought of band 83-93 as being important.
Posts: 55 | From New York | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The risks of not treating lyme can be very serious. Please read the articles so that you know how to avoid worsening.
If you are ill, you will need treatment that covers all the aspects. Denial can be seductive but, as we all know, seduction can wear off when reality hits.
I am sorry that you are not well. With good treatment you will have a chance at a good life. Without treatment, all bets are off.
All the support measures in the world will not work if infections are not adequately addressed. There are various ways to do that. Links below may be of help in your decisions.
This certainly does require a great deal of research and even more courage. I hope you find what you need.
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
[ 20. December 2008, 12:14 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Based on what you have said, lyme sounds likely.
But, I can't blame you for wanting to run more tests, not because I think you don't have it, but just to see "how positive" you can get it to be. If YOU are comfortable with the decision to treat, running more tests may not serve much purpose, but I say, why not run them?
My doctor runs western blots on me from time to time, because insurance covers of them. It is interesting to see which bands come up positive. It is also interesting to see over time if you switch from IgG to IgM, or visa versa, etc. More information is always good information. If your insurance covers Quest, why not run it?
Keep in mind that if it comes up negative, or with no bands at all, just take it with a grain of salt. Don't let that erase what you already know from Igenex. But then again, who knows, maybe it WILL be positive? Or, maybe a band you didn't show on Igenex will come up. Like if band 23 comes up, that would be neat, because that is a pretty lyme-specific band.
I'm not sure if all of those basic labs will show the bands (if any) that did show even if you are negative...but for me, Stony Brook did, so it was nice to see those bands at least.
I have had positive Western blots while on antibiotics, so you never know. I think there is something to be said for "provoking" the pathogens before you test for them.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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In one of the ILADS seminars on DVD - years ago, Dr. B. said that repeat testing during treatment cannot show what we want it to.
The testing is just not at that point yet.
If tests come back and are false negative, your medical file will be marked and you will have very little chance of getting proper treatment.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You asked what an antigen is. If you have a certain infection and that germ is hard to see, they test for antigen response. If you have that infection, such an antigen test can help to determine if your body has the specific infection.
I hope someone will be along with a better, more complete, explanation. In the meantime:
ANTIGEN - from Wiki (just one place to start with research)
An antigen (from antibody-generating) or immunogen[citation needed] is a substance that prompts the generation of antibodies and can cause an immune response.[1]
The word originated from the notion that they can stimulate antibody generation. We now know that the immune system does not consist of only antibodies.
The modern definition encompasses all substances that can be recognized by the adaptive immune system.
In the strict sense, immunogens are those substances that elicit a response from the immune system, whereas antigens are defined as substances that bind to specific antibodies.
Not all antigens produce an immunogenic response, but all immunogens are antigens (Immunobiology, Janeway and Travers, 1994).
Antigens are usually proteins or polysaccharides. This includes parts (coats, capsules, cell walls, flagella, fimbrae, and toxins) of bacteria, viruses, and other microorganisms.
Lipids and nucleic acids are antigenic only when combined with proteins and polysaccharides. Non-microbial exogenous (non-self) antigens can include pollen, egg white, and proteins from transplanted tissues and organs or on the surface of transfused blood cells.
. . .
Endogenous antigens
Endogenous antigens are antigens that have been generated within the cell, as a result of normal cell metabolism, or because of viral or intracellular bacterial infection.
The fragments are then presented on the cell surface in the complex with MHC class I molecules. If activated cytotoxic CD8+ T cells recognize them, the T cells begin to secrete various toxins that cause the lysis or apoptosis of the infected cell.
In order to keep the cytotoxic cells from killing cells just for presenting self-proteins, self-reactive T cells are deleted from the repertoire as a result of tolerance (also known as negative selection).
They include xenogenic (heterologous), autologous and idiotypic or allogenic (homologous) antigens.
quote:Originally posted by tainabell: [QB] Whoa. I just read Dr. C's WB again....83/93 is the DNA of the Bb!?! Is that right?
Also, this might sound like a stupid question, but what is an antigen?
YES... the DNA of the Bb!!!
I think each antibody response is in regard to a specific antigen. (???)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The Western Blot measures our response to Bb's Osps - outer surface proteins.
It measures our antibodies that we make in response to the proteins in the cell walls of pathogens. Our antibodies are supposed to lock onto those proteins and begin to destroy them.
Antibodies need enough Ca and Mg to be made...among other nutrients.
Mg levels dive early on in lyme. With low levels of Mg, our antibody to Bb's OspB is defective.
Tetracycline binds to Ca.
Nice try, but this pathogen is very dependent on Ca AND Na going into and then out of the cells it infects.
When Na LEAVES the cell..in goes glucose and amino acids...so Bb can build its cell walls.
If you want a more accurate test, increase your intake of Mg and sublingual B6 several days prior to the test.
This worked for someone on this board many months ago. It allowed him to test "positive".
Posts: 9430 | From Sunshine State | Registered: Mar 2001
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Lymetoo, your icon of the little guy bowing to the DNA thing CRACKED me up. So thanks for that. A good laugh is the best medicine, right? We should be beating up the little buggers though, not bowing to them!
Okay, I've come round. I'm not going to try to get tested again. Pretty sure I've got it, now its off to treating it with a LLMD.
Posts: 55 | From New York | Registered: Nov 2008
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