My MS Mis-Diagnosis please read!!!

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Postby cheerleader » Fri Mar 13, 2009 11:28 am

We went to a Lyme literate doc who took blood and sent it to the Igenex lab in northern California. Jeff was negative. It was money well spent.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Fri Mar 13, 2009 12:30 pm

went to a Lyme literate doc who took blood and sent it

did this too, when first diagnosed lyme is a very unlikely but possible chance that maybe it's not ms.
Had ms for over 19 years now.
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Postby Wonderfulworld » Fri Mar 13, 2009 1:11 pm

I worked as a field archaeologist in Ireland from the age of 15-24 - diagnosed aged 25 with RR-MS.

I've always put Lyme out of my mind because no medical professional has ever mentioned it to me, but there is a bit of a possibility that all those summers working outdoors.......there's always been the attitude of we don't have Lyme in Ireland....but I know that's not true.

But in some ways it also joins the "never will know unless they biopsy your brain" comment from my former horrible neurologist when I asked about neurosarcoidosis - I had sarcoidosis age 19 but it disappeared without treatment.....

Lyme, Lupus, Neurosarcoidosis............? Or just MS.
:?:
It does make me wonder because Rebif did to me what the Original Poster mentioned it did to him.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby sojourner » Fri Mar 13, 2009 2:02 pm

Robbie,
Why is it very unlikely????

Certainly not unlikely because of your location.

We vacation in Big Lake Rideau every second year near Portland, Ont. and our dear little dachsund got lyme there last summer (got pics of his "classic" bullseye). Within two weeks he was lame and had a bells palsy. Your area is very endemic for borrelia.

Certainly not unlikely because the lyme tests your doctors give you are definitive proof you do not have lyme.

Here is a link to 17 citations concerning seronegativity as a real problem in lyme diagnosis. These tests are abysmal! Why do doctors still rely on them?
http://www.lymeinfo.net/medical/LDSeronegativity.pdf

Certainly not unlikely because the symptoms, and pathologic processes like, lymphocyte activation, MMPs production, autoantibody production-for neuronal proteins and myelin basic proteins and, of course, demyelination are exactly the same in MS and Lyme.

Here are two interesting papers:
http://msj.sagepub.com/cgi/pdf_extract/5/6/395
http://www.aaem.pl/pdf/aaem0024.pdf

Certainly not unlikely because having an MS-like illness has never been associated with lyme. Or that diagnosis of MS is never mistaken for lyme. Here is a nice "real life" patient story (I know the gentlemen featured). Or that people diagnosed with MS who are later treated for lyme never get better.

http://www.newsobserver.com/news/health ... 51337.html


So please tell me, truly, why is it very unlikely?
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Postby LR1234 » Fri Mar 13, 2009 2:38 pm

Hi Peta,
I probably have asked youthis b4 on private Messaging but what antibiotics did they put you on for 9 months? I might ask for IV antibiotics if I can, did they do it to kill off Lyme?

L x
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Postby sojourner » Fri Mar 13, 2009 3:06 pm

Peta,

12 years is quite a run, especially after three attacks so close together. I'm glad Copaxone is working well for you, and I'm sure your extensive antibiotics did nothing to slow progression. Or was it your spontaneous remission or combustion or whatever.

I don't think our friend Dave (from the article you reference) feels it is spontaneous remission. He saw doctors for 7 yrs trying to get to the bottom of his ailments. Finally he received a definitive dx of MS with lesions and Avonex treatment. During lyme treatment he felt a distinct cause and effect of the antibiotic treatment, with classic Herxheimer's seen in a spirochetal infection, followed by slow improvement. Apparently the federal government also feels he had lyme because he is, without a doubt, cleared once again to fly people (maybe even you) around on Delta Airline's jets. The FAA is one tough cookie, you know.

We all sort through info differently and "feel" a lot of things and ways. I feel you are a resounding abx success and plan to include your success when pontificating on the subject of abx use for MS.....it'll go something like this,

I know this fellow (very nice fellow, really) who was having rapid progression and multiple relapses after a dx of MS. He did 9 months of IV (ceftriaxone?) followed by some oral abx for lyme. He subsequently continued with Copaxone treatment one year after abx treatment, and has seen no progression in 12 yrs. I "feel" it was the abx that he benefited from.

How's that?
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Postby LR1234 » Fri Mar 13, 2009 3:27 pm

I also don't believe in spontaneous remission. I think there is always a cause an effect...if you had done nothing Peta I think you would have continued down the path you were going originally. I don't believe in coincidences either, my gut feeling is that the abx removed something taxing your immune system which prevented further attacks. I am just keen to know what abx they gave you.

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Postby robbie » Fri Mar 13, 2009 5:30 pm

Why is it very unlikely????


Your right sojourner I retract the word very it was a little much

peak season for Lyme disease. Each year, about 23,000 new cases of Lyme disease are diagnosed in the United States. About 100 new cases are diagnosed in Canada.

The 2008 Atlas of Multiple Sclerosis showed MS strikes 133 people out of every 100,000 in Canada, the fifth highest rate among countries surveyed between 2004 and 2005.

this must be close to very unlikely ????
Had ms for over 19 years now.
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Postby sojourner » Sat Mar 14, 2009 8:07 am

Robbie,

Have you read this from 2006.
It discusses distribution of lyme carrying ticks in Canada.

[/url] http://www.canlyme.com/ogdenetal2006.pdf[url]


You know Robbie, I think the Canadian govt' just might be behind on this. Here is a fact---geographic distribution of MS and Lyme disease are EXACTLY the same all around the world except in Canada. This flies in the face of reason. Researchers are finding larger number of lyme carrying ticks all over Canada. So how is it possible that lyme in Canada is so rare? The only conclusion is that it is there, but is diagnosed as something else.

My god! our dog was in Ont. on an island on a lake for 6 days and came home sporting a lovely rash on his tummy (if not on his tummy, we wouldn't have seen it). Given that three of five of us in our family have or are battling lyme disease we have really rethought our future vacation plans----no more Big Rideau for us. The risk is too great.

Given the challenges of lyme diagnosis saying lyme is rare in Canada is another great example of circular logic. Goes something like this:

Lyme is rare, so don't diagnose it, because lyme is rare, so don't diagnose it....Throw in a very unreliable blood test that doctors believe is reliable, and you have a recipe for disaster.

So Robbie, Great! your MS (and everyone else here) was not caused by a complex milieu of bacteria, gone chronic/latent and able to cause mayhem in your body, which is difficult to treat because of our lack of knowledge and the complexity of the pathogen.

It's every man for himself and I don't intend to follow the lead buffalo off the cliff.
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Postby cheerleader » Sat Mar 14, 2009 8:17 am

Um..
Robbie said he went to a Lyme literate doc and had the Igenex blood work done when he was first diagnosed with MS. That's what my hubby did, too. They were both negative. I really don't think there's an argument here.

Why are we going off on Robbie? :?

AC

PS Rocephin is the IV antibiotic of choice for many Lyme literate docs. Usually a 9 month course.
Last edited by cheerleader on Sat Mar 14, 2009 8:20 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Sat Mar 14, 2009 8:20 am

It's every man for himself

seems that way, so do you have ms or lyme?
Had ms for over 19 years now.
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Postby sojourner » Sat Mar 14, 2009 8:41 am

Peta,

"Quacks" have a long history of changing our world with new ideas, understandings, innovations, and treatments.

A short list:
Galileo
Semmelweiss
Mendel
Darwin

Here is a research paper citation heavy presentation by our physician (Yale trained, did his undergraduate at U of Penn.). Despite much "feeling" to the contrary there is a great deal (and mounting) body of knowledge about the nature of diagnosis, treatment and understanding of lyme
disease and the pathogen that causes it.

http://www.ilads.org/lyme_research/chronic_lyme.html
Quack, Quack, Quack :twisted:
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Postby sojourner » Sat Mar 14, 2009 8:48 am

Oh no, I'm not going off on Robbie!!!! If it seems that way, I am sorry......I am not.

I am just trying to get some info out that never sees the light of day, however, that doesn't mean the data doesn't exist.

I don't care how, when, where one had a lyme test; whether it was on blood, spinal fluid, serology or pcr.........Lyme tests are NOT to be used to diagnose Lyme disease.......The test, as it is designed, should be used for disease surveillance only-a much higher threshold set by the CDC.

There is study after study (sometimes on CULTURE CONFIRMED LYME DISEASE PATIENTS) that show the current tests miss MANY patients.

So how is it that physicians continue to use it???? That is a question I have never been able to get an answer to. I know we like tests, simple ways to rule in or out diseases and that is fine if the test in very accurate, but if it is not that is a HUGE problem.
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