Lyme Disease and MS

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Lyme Disease and MS

Postby bduffin » Tue Jun 14, 2011 11:50 am

I had confirmed CNS lyme disease in 2005 - rash and all. Just did not make the connection for three months and by then the lyme had disseminated and cross the blood brain barrier. I had 4 weeks of IV antibiotic.

Lyme gone - Six months later I was diagnosed with MS.

Anyone with a history of both MS and Lyme? (I believe I have a reinfection with Lyme. This time, tick and rash. I live in one of the most endemic areas in the US. New Hampshire.)
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Postby carolsue » Tue Jun 14, 2011 12:09 pm

Not lyme but I had west nile virus/fever about 5 months before my first MS symptom. I did not receive any treatment for the WNV, symptoms passed within two weeks (including that virus's tell tale rash). My theory is that WNV was the trigger for the immune cascade of responses that became my MS but I'll never know for sure.
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Postby bartman » Tue Jun 14, 2011 3:23 pm

bduffin,
In my opinion they are the same. Well really when you say Lyme you must remember the coinfections, specifically Babesia and Bartonella. So in math terms Lyme + Babesia+ Bartonella= MS. These infections are all over that it's just a matter of time before something has to happen. This is a public health emergency being completely ignored and misdiagnosed.
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Postby WeWillBeatMS » Sun Aug 28, 2011 2:31 pm

Bartman, were you misdiagnosed as having MS when it was actually Lyme disease?

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Postby bartman » Sun Aug 28, 2011 3:44 pm

Not me WeWillBeatMS, my cousin. Misdiagnosed in 1995, started getting very neurological in 2008 when I discovered he had chronic lyme. Has done the wheldon protocol and is much better but still not well. In my opinion, MS is caused by these 3 infections- Lyme, Bartonella, Babesia. My cousin has tested positive for all. I don't see how it's possible to have these infections which basically mimic MS and say you have both.
If you had lyme first, I would definitely treat lyme and coinfections. Very suspicious to first have one and then get the other. fyi, Michael J Fox had lyme before he had parkinsons. This infection is the cause of so many diseases especially neurological diseases that it's not even funny.
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Postby WeWillBeatMS » Sun Aug 28, 2011 5:47 pm

Hey bartman, I was diagnosed with MS in 2005 by three different neurologists only by looking at my MRI and a physical exam. Never tested for Lyme disease. I recently went to Brooklyn to see Dr Sclafani to get checked out for CCSVI. While still lying on the operating table, I drowsily asked him how the procedure was going and he said that he hadn't seen such beautiful veins in 2 years since starting to do the Liberation Procedure. He said I had zero CCSVI and asked me if I had even been tested for Lyme. I said I didn't know. He said that I was the first patient diagnosed w/ MS that he had seen that did not have any CCSVI when he went in with the angioplasty. A few weeks ago I asked my current (4th) neurologist if he would test me for Lyme and he ordered the standard garbage titer test through my insurance which I was prepared for it to come back negative, and it did. Now I am going to spring for the $260 to get tested for Lyme with IGeneX with their Western Blot IgG, Western Blot IgM, Lyme IFA (whatever all that stuff means).

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Postby bartman » Sun Aug 28, 2011 6:18 pm

The lyme tests are inaccurate and unreliable and it doesn't matter which lab does it or what test is used. Add in the fact that you have probably used immunosuppresive meds and you are very likely to be negative. It was designed to fail. The best way to determine if you have infection is to treat with an antibiotic and monitor the reaction. Most get worse before they get better. Ask your neurologist to treat you with minocycline + copaxone. This way you make everyone happy, you cover your ms and lyme and there are many studies indicating this combo is very beneficial. Get yourself a lyme literate doctor. Many many people are discovering that they have been misdiagnosed with MS when it was lyme. watch the movie Under our skin free on Hulu. read Cure Unknown by pam weintraub, really get educated and you will realize. and remember there has never been any cure for anything ever other than antibiotics. They are safe, tested, cheap and they work all reasons why MS doctors don't acknowledge them. No one make any money if the patient gets well. Read CPn Help.org, the patient stories, they illustrate how difficult and eventually how helpful antibiotics are. Remeber it's usually not just lyme, it's usually several other infections as well.
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Postby WeWillBeatMS » Sun Aug 28, 2011 7:13 pm

After getting back from Brooklyn a friend told me about that documentary Under Our Skin and I watched it. Freaky stuff. It's crazy to think but it almost seems like the CDC is trying to sweep this Lyme disease under the rug. Just the fact that doctors use this titer test which is so highly inaccurate is crazy.
I am just now coming off of Tysabri as July 9 was my last infusion. I changed jobs and am currently without insurance for another month. My neuro was planning to take me off Tysabri later this year anyway because he sees the rate of PML starts jumping up after two years being on the stuff. We've talked about me going on Gylenia. I have heard about the antibiotics/Copaxone combo even before my pursuing checking into Lyme. I just don't know how open he will be about putting me on the combo. I could ask.

I was told by several folks in TIMS that IGeneX is the only lab to trust for Lyme testing. They are in California and specialize in Lyme disease and other tick borne illness testing.

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Postby bartman » Mon Aug 29, 2011 3:25 pm

Having just been on Tysarbri, you have basically wiped out your immune system. Therefore you will not be able to produce antibodies, therefore you likely will get a negative lyme test even from Igenex. The problem is your neuro should have given you mino + copaxone first before Tysarbri or Gilenya. Those drugs don't work and people get infections from them. Hmmm I wonder why? Cause you already have an infection then they give you an immunosuppresive like Tysarbri or Gilenya and it brings out the infection. Call your neuro up tonight and ask him if he will prescribe you the copxone+ mino combo? If he won't find a neuro who will. But beware you will not feel good for awhile. Keep educating yourself and find a lyme support group in your area. Most people get better when they find the correct doctor and treat the infections aggressively. You need to find support because the antibiotics cause reactions called a herxheimer which make it seem like you are having a relapse and you really are getting worse but generally it eventually starts getting better. There is no easy way to treat. Forget about new MS meds they are all about money...ie just a coincidence that first ms meds come out in 1995, new batch out 2012. A difference of 17 years or length of patent protection. Please read CPn Help.org
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Maybe lyme and Candida

Postby fee001 » Mon Aug 29, 2011 6:54 pm

Hi

Consider both yeah, antibiotics and stress can cause Candida as well.

I'll try and get u some links ok


http://www.lymeinfo.net/multiplesclerosis.html


I posted on here re Candida july 8th

ok

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Postby WeWillBeatMS » Tue Aug 30, 2011 11:21 am

assuming my neurologist has no clue about minocycline w/ the Copaxone, what should the dosage for the minocycline portion be? I know the Copaxone is just one standard syringe per day.
Is the dosage for minocycline higher for treating Lyme than the minocycline/Copaxone combo that has been used for treating MS?


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Postby fee001 » Tue Aug 30, 2011 11:26 am

Hi!

Where drugs and dosage are concerned you should always consult a doctor.

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Postby bartman » Tue Aug 30, 2011 3:20 pm

The dosage in the trials that were completed were 100mg of mino twice a day. Start there. The neuro will be well aware of the copaxone /mino trial. They all know it theyjust choose not to acknowledge it and keep it to themselves otherwise EVERYONE who takes copaxone should be on mino too because its safe and very effective. Be warned the first month is difficult.
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Re: Maybe lyme and Candida

Postby AlmostClever » Tue Aug 30, 2011 5:45 pm

fee001 wrote:Hi

Consider both yeah, antibiotics and stress can cause Candida as well.



I can't find the link anywhere but found it interesting... Candida was mentioned as a secondary co-infection of Lyme. It didn't say why (or when).
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: Tysabri (Lyme disease and MS)

Postby NHE » Tue Aug 30, 2011 11:13 pm

bartman wrote:Having just been on Tysarbri, you have basically wiped out your immune system.


This is not correct. Tysabri does not "wipe out" the immune system. It is an antibody which blocks cell adhesion molecules, such as VCAM-1, necessary for T-lymphocytes to cross the blood brain barrier (BBB). The immune system remains active. Indeed, patients coming off of Tysabri often experience Immune Reconstitution Inflammatory Syndrome (IRIS) where the active immune system is now free to cross the BBB and cause enhanced inflammation.

For more details, the following information is quoted from Tysabri's prescribing information. http://www.tysabri.com/en_US/tysb/site/ ... BRI-pi.pdf

12 CLINICAL PHARMACOLOGY
12.1 Mechanism of Action
Natalizumab binds to the alpha 4-subunit of alpha 4 beta 1 and alpha 4 beta 7 integrins expressed on the surface of all leukocytes except neutrophils, and inhibits the alpha 4-mediated adhesion of leukocytes to their counter-receptor(s). The receptors for the alpha 4 family of integrins include vascular cell adhesion molecule-1 (VCAM-1), which is expressed on activated vascular endothelium, and mucosal addressin cell adhesion molecule-1 (MAdCAM-1) present on vascular endothelial cells of the gastrointestinal tract. Disruption of these molecular interactions prevents transmigration of leukocytes across the endothelium into inflamed parenchymal tissue. In vitro, anti-alpha 4-integrin antibodies also block alpha 4- mediated cell binding to ligands such as osteopontin and an alternatively spliced domain of fibronectin, connecting segment-1 (CS-1). In vivo, natalizumab may further act to inhibit the interaction of alpha 4-expressing leukocytes with their ligand(s) in the extracellular matrix and on parenchymal cells, thereby inhibiting further recruitment and inflammatory activity of activated immune cells.

The specific mechanism(s) by which TYSABRI exerts its effects in multiple sclerosis and Crohn’s disease have not been fully defined.

In multiple sclerosis, lesions are believed to occur when activated inflammatory cells, including T-lymphocytes, cross the blood-brain barrier (BBB). Leukocyte migration across the BBB involves interaction between adhesion molecules on inflammatory cells and their counter-receptors present on endothelial cells of the vessel wall. The clinical effect of natalizumab in multiple sclerosis may be secondary to blockade of the molecular interaction of alpha 4 beta 1-integrin expressed by inflammatory cells with VCAM-1 on vascular endothelial cells, and with CS-1 and/or osteopontin expressed by parenchymal cells in the brain. Data from an experimental autoimmune encephalitis animal model of multiple sclerosis demonstrate reduction of leukocyte migration into brain parenchyma and reduction of plaque formation detected by magnetic resonance imaging (MRI) following repeated administration of natalizumab. The clinical significance of these animal data is unknown.


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