posted 06 June, 2008 09:33 AM -------------------------------------------------------------------------------- Hi, I am looking into the lyme and ms connection and looking for others like myself who were told ms and found out it was lyme. I believe ms is lyme with its co infections left untreated. I need others who have been through the same thing. The ms society says it is rare but what I have found out it seems that borrelia is causing most if not all cases of ms. Thank you, Tammy you can e-mail me at [email protected] --------------------------------------------------------------------------------
Posts: 125 | From southington | Registered: Jan 2002
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
My future father-in-law was dignosed with ms and it turned out to be lyme and ehrlichia.
He found out after continuing to deteriorate after over a year of ms meds and my insistence that he get a lyme test.
He's been on abx for about six months now and has seen lot's of improvement
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Rosco
Many Many people are DX with MS and Really have Lyme and or co infections -Very common - Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I was told I likely had MS, but knew in my gut it was wrong.
Dr. Schaller put it best: "In the last forty years have you been camping, in the woods, walked in parks, have a home near deer {forest, field, suburbs, ticks are everywhere} and brush, engaged in gardening or do you have seven of the symptoms listed on page 9-10 in this free article: Advanced Topics in Lyme Disease - http://tinyurl.com/38alob If you answer "yes," perhaps you should get some testing done at IgeneX before you waste more time and money" From what I understand he believes MS is untreated Lyme Disease.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Yes. Was dx'd with MS for the first 4 years of my illness. Then, dx'd with Fibromyalgia for another 17 years before finding out it was Lyme in 2003.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I wasn't diagnosed with MS, but had 3 doctors tell me that they thought that was what I had. I have numerous white matter lesions and they found 1 o-band in my CSF. Neuro #4 was telling me that he thought that I had MS even though I had a positive western blot for lyme. I live in one of the "states of denial".
I am currently being treated with doxycycline and feel better each day!
posted
when I first found out that what I really had
was Lyme and not MS (5.5 years ago) I felt so alone
I was wrong about that too
it seems that i am in very good company
was diagnosed with MS in 1991 and lived with
that diagnosis until 5.5 years ago
the correct diagnosis came at the 11th hour--
I was dying
Lyme, Bartonella, Myco and possible Babesia
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
i had a ms diagnosis. i had white matter lesions and all the symptoms. but then i got sicker and they said maybe it is ALS, and other things.
it turned out i testes pos for lyme and ehrlichia. also thought to have bart and babs.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I was diagnosed with ms just recently Jan 08( did ask if could be lyme she did a test neg and could not accept that, because in 2000 I lost my feeling from waiste down and one test was lyme and was post for elisa and wb neg by a neurologist,,,so lived with other symptoms must like ms with loss of eye for a week and so on for years...i remembered the positive lyme back so went to a llmd and he did an elisa and web blot tested positive for both under cdc standards turned out back then had lyme but was told in 2000 since western blot was neg did not have lyme never treated by neuro...now on antibiotics no improvement so far just worse,,will be starting iv....thanks for listening.
Posts: 15 | From pennsylvania | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
lymebytes - GREAT link to many other MS links.
--
IMO: The MS Society will say lyme connection is rare because they and many neurologists and teaching hospitals get MILLIONS of dollars in grant money to study MS, not lyme. If lyme is seen to be connected the funding would dry up.
Also pharmaceuticals for MS are very expensive and designed for life-long use. Yet, how often do they really work ? Hmmmm. Just thinking out loud.
separate from all that: ======================================
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
--
full two page article at link above. Be sure to see the second page, it can be overlooked.
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis
by Ginger Savely, FNP-C
Text at link. Copyright forbids reposting article.
See also:
Fritzsche, M. Chronic Lyme Borreliosis at the Root of Multiple Sclerosis: Is a Cure with Antibiotics Attainable? Medical Hypotheses 2005; 64 (3): 438-448.
-
Uhh . . . I checked the link and the article is nowhere to be found at that site.
But, here's another similar one:
Hypotheses Regarding Autoimmunity in Lyme Disease and Multiple Sclerosis
posted
Dr P has done extensive research and many public presentations on the Lyme/MS connection. We even have a CD ROM of one of these presentations on the Lyme/MS connection. PM me if you want a copy.
Unfortunately the main street medical establishment does not want to hear the story.
He has also treated hundreds that have been Dx with MS/ Parkinsons, ALS, Lupis, and others... who ended up being lab and clinically positive for Lyme and co-infections.
MS, Parkinsons, Als etc are all CLINICAL DX- Just like Lyme. Since more focus in medical schools, and the public is on these rare autoimmune diseases-- guess what, that is what people get Dx with.
I was once told if you hear horses running-- don't think zebras.
Lyme is the #1 fastest spreading infectious disease, is so easy to get, and is the most controversial, political and disabling disease if left untreated.
Again common sense can override all the medical BS in the world.
Medical doctors are only people who went to school for a few more years than most-- and only read what others tell them to like the IDSA, whom we now know for a fact that they are unethical and corrupt.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
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