WeWillBeatMS in Brooklyn for Liberation 6/11/11

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby WeWillBeatMS » Sun Jul 31, 2011 7:02 am

Started a new job a month ago and fighting financial challenges. I just tested negative for Lyme with the titer blood test that my neurologist ordered for me. It just went to Quest labs though so I already knew that there was a good possibility that it would come back negative. I will ask if he will order the Western Blot test but I kind of doubt he will because my insurance will likely say it's not necessary. I think I'm going to ask him if I can pay the $500 or whatever it is to get tested through IgeneX.

Thanks for the pm MaggieMae.

Other than Lyme disease, what are some other demylenating diseases are out there that could look like MS?
I'm baffled that it's conceivable that I could have been diagnosed with MS by several neuros and treated with these stupid medicines, particularly Tysabri which I am still on, and never have been tested for other possible diseases.

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Postby bartman » Sun Jul 31, 2011 8:11 am

A person who was diagnosed with MS and treated with MS drugs like Tysarbri and other immunosuppresive drugs has very little chance of testing positive for any infections because there immune system is wiped out and can no longer produce antibodies which is what the test check for. If you think Lyme you need to see a Lyme doctor to be taken seriously or you play right into the MS doctors hands which they know will likely get neg Lyme test. What ends up happening in many situations is that after antibiotics are started, then you start seeing more positive test results. Once you start killing the infection, as it starts to clear the immune system starts to work again and also starts helping to fight the infection. Unfortunately, this is a very long difficult process because the killing of the infection produces toxins which make you worse before getting better. It becomes a mental mind game that once again plays into the MS doctors hands. To them your MS is getting worse, in reality you are experiencing a severe herxheimer reaction. Get tested for Chlamydia Pn, Mycoplasma Pn, Bartonella Henslea, Quintana and Babesia. If you have Lyme you typically have atleast one of these also. It's a long process to get better but the only way. You need a good lyme doctor!! Why not give Minocycline a trial? It is being used with Copaxone in MS and shows great results and ironically also is used to treat Lyme. It is safe, proven and effective. If you start feeling horrible you know its Lyme because of the reaction. At this point you cannot rely on a blood test because they are not reliable in an immunocompetent patient much less an immunosuppressed patient. It's brutal but eventually (and that could mean years, but you know quickly the antibiotics are doing something), you just have to persevere like you never imagined and you need someone to push you to keep going even at your lowest. The best test is a trial run of Minocycline and the reaction that follows!
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Postby Cece » Sun Jul 31, 2011 8:51 am

I think that is fantastic advice from bartman.

Keep us posted, WeWillBeatMS. Wishing you success at the new job and at figuring out your diagnosis.
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Postby WeWillBeatMS » Sun Jul 31, 2011 6:46 pm

I agree CeCe and thanks for the well wishes. Diet Coke? Just kidding.

Bartman, thanks so much for taking the time to write that thoughtful response.

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Postby marcstck » Sun Jul 31, 2011 8:25 pm

WeWillBeatMS wrote:Started a new job a month ago and fighting financial challenges. I just tested negative for Lyme with the titer blood test that my neurologist ordered for me. It just went to Quest labs though so I already knew that there was a good possibility that it would come back negative. I will ask if he will order the Western Blot test but I kind of doubt he will because my insurance will likely say it's not necessary. I think I'm going to ask him if I can pay the $500 or whatever it is to get tested through IgeneX.

Thanks for the pm MaggieMae.

Other than Lyme disease, what are some other demylenating diseases are out there that could look like MS?
I'm baffled that it's conceivable that I could have been diagnosed with MS by several neuros and treated with these stupid medicines, particularly Tysabri which I am still on, and never have been tested for other possible diseases.

WeWillBeatMS


I've posted this link several times before, but this is an especially important link for you to read and understand, WeWillBeatMS. The paper it links to is a comprehensive look at all of the diseases that can be misdiagnosed as MS, and at the back of the paper you'll find a list a list of 100 such diseases.

The misdiagnosis rate of MS is very high, ranging from 5%-15% in various studies. That's right, out of every 100 MS patients, there is a very good chance that 10 of them don't have MS.

Here's a link to the paper. Please use it as a source for future research. You can Google all of the various diseases that are comprehensively listed at the end of the paper and truly become your own best advocate.

http://www.neurologia.org.mx/portalweb/ ... ulos/6.pdf

regarding Lyme disease, I personally have gone down that road, visiting two of the most prominent Lyme literate doctors, and my understanding is that testing done by any lab other than Igenex is highly inaccurate. I know it's expensive, but it may be well worth the money just for your peace of mind to pay out-of-pocket, if necessary.

In the meantime, please download and utilize the above paper. Education is the key, and self advocacy is the weapon.

Best of luck to you.
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