posted
I was recently diagnosed as having Lyme disease after being told for 20 years that I had MS. I'm having a hard time believing this..anyone else been misdiagnosed this way?
Posts: 46 | From Wisconsin | Registered: Sep 2006
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Vermont_Lymie
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posted
The symptoms of lyme and ms can be so similar that many of us with lyme initially thought, and were tested for, ms.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I'm going to make a friendly suggestion -- use the search function on this board. Type in "lyme" and "MS" and you will pull up many days worth of good reading on this subject.
The short answer is -- YES! Many, many of us were diagnosed with MS, sometimes for many years. I had two tentative MS diagnoses, but never really believed them -- they fit the neurological part of my symptoms (mostly, anyhow), but ignored the bigger picture -- obvious immunosuppression going way, way back before the neuro stuff started.
It wasn't until I learned about Lyme that I found something that fit the whole clinical picture.
I know it is hard to shift paradigms, especially after having lived with a diagnosis for so long... but there is a fair body of evidence supporting that lyme may be a huge cause of MS-like symptoms (some researchers believe that ALL MS is caused by spirochetal infections....)
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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cactus
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posted
I was diagnosed with MS in 2001, only to find out in 2005 that it was Lyme.
There are many of us. If you do a search you should find a lot of info.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I have been researching the link between MS and Lyme disease for a few years. Originally, my research was focused entirely on MS, but I soon realized that MS displays much of the same geographic distribution as Lyme disease. Both geographically and biochemically, the overlap is pretty shocking.
-Megan
Posts: 5 | From New Jersey | Registered: Mar 2006
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kelmo
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Megan...First of all may I commend you on a FANTASTIC research paper. My LLMD is under the impression that MS and Lyme are one in the same. He may be wrong, but I think there may be a good chance of a lot of misdiagnosis.
I was surprised and shocked at the demographics. My daugther came down ill a few years ago with Bartonella. We live in that big dark brown area in the southwest.
It would be very interesting to find what the connection is. I know we have quite a West Nile problem here; it's not making the news, but I personally know people who have had it.
I know a man who was a vibrant father of four, who is now wasting from ALS. I have several others who are right now being slapped with the MS label because there is no evidence of anything else. If the tests for TBD were more accurate, we could look this monster in the eye.
I have to print your paper and really digest it. Thank God for you, you are our future and I hope your research brings a stop to the suffering of many who don't want to be disabled.
posted
I was originally dx'd with MS. Even though MRI and spinal taps were negative for both. I was to stupid to object at the time so I started treatment.
Surprise...Not MS but Lyme. Now I have MS all over my medical records and my life insurance costs my husband a small fortune.
I wonder what kind of damage all those steroids did to me. I have been steroid free for a whole month now. YIPPEE.
I know what you mean. I even lost my job of 21 years.
I just found out that my LP from years ago was normal except for some bacteria, but it was never followed up on and I was diagnosed with MS. Never really asked about the results then since I figured they knew best.
I stopped Avonex after 1-1/2 years and recently stopped my monthly steroid injections. Just started 3 antibioics so will hopefully be treating the correct illness.
Thanks for responding.
Posts: 46 | From Wisconsin | Registered: Sep 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dmc
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Member # 5102
posted
diagnosed MS back in 1988...first symptom Bell's Palsy. Kept being told MS till found LLMD in Sept. 2003....Yep, it's LYME (positive Western Blot...always negative on ELISA tests throughtout years.)
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Vermont_Lymie
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posted
Just read this abstract. It seems to begin to explore some basis of a similar mechanism between Lyme and MS:
Cells secreting antibodies to myelin basic protein in cerebrospinal fluid of patients with Lyme neuroborreliosis
S Baig, T Olsson, B Hojeberg and H Link Department of Neurology, Karolinska Institutet, Huddinge University Hospital, Stockholm, Sweden.
An autoimmune response to myelin basic protein (MBP) has been proposed to participate in the development of the chronic neurologic manifestations that may accompany Borrelia burgdorferi-induced Lyme disease.
Using an immunospot assay, we counted cells secreting antibodies to MBP. Anti-MBP IgG antibody-secreting cells were detected in CSF from eight of 13 consecutive patients with Lyme neuroborreliosis irrespective of stage of disease.
The numbers were between 1/370 and 1/5,000 CSF cells (mean, 1/1,250 in the 13 patients). The highest numbers were encountered in two patients with severe signs of CNS involvement.
The numbers decreased in parallel with clinical improvement after treatment. Anti-MBP IgG antibody-secreting cells were also observed in the CSF from patients with a variety of other inflammatory diseases of the nervous system, and their role in the development of tissue damage remains unsettled.
Anti-MBP IgG antibody- secreting cells were not detected in the patients' blood, reflecting accumulation of this autoantibody response to CSF.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I was tentatively diagnosed with MS in 1991 and "definitively" in 1999. I have been sick since the early 80's when I was a teenager. It was only this year that my doc tested me for Lyme and the Igenex Western Blot came back positive (though not according to CDC rules).
Question for others who were diagnosed with MS first and then Lyme diagnosis: do you have brain and/or spinal cord lesions visible via MRI? I know that the lesions can be caused by either illness, but was wondering how many others with Lyme disease have the lesions.
Thanks.
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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posted
torticat- I was (mis)diagnosed with MS 10 years ago and have many sclerosis on my spine and brain. These are seen with an MRI. 2 years ago I found out I have had Lyme for quite a while.
Posts: 85 | From Eugene | Registered: Jun 2005
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Dave6002
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posted
They found that a cancer drug designed to eliminate excess of B cells (Lymphoma). Since B cells play a large role in the humoral immune response: producing antibodies and attack pathogens.
The clinical trial also indicated that autoimmune may also play a role in MS.
If MS actually is Lyme, does that mean this drug should be effective on Lyme and autoimmune also play a role in Lyme?
If it is true, it could be very significant.
As this drug is very specific: it is antibod against B cells.
posted
Thanks everyone for your replies. I've already browsed several of the websites provided and found them very informative.
I've been cautiously optimistic since this diagnoais (versus MS for 20 years), but after reading these replies, maybe it is true.
How can you be sure--try antibiotics and see how they work? I am on 3 for a 6-week trial at this point.
Posts: 46 | From Wisconsin | Registered: Sep 2006
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Vermont_Lymie
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Kawai,
i am not a doctor -- but based on everything I have learned on this lyme journey --
6 weeks may not long enough to evaluate. It may be, but my LLMD says that some people take longer to respond if they have been sick for a long time.
Talk to your LLMD -- maybe you can take antibiotics for longer?
Posts: 2557 | From home | Registered: Aug 2006
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Since I've probably had this for 20+ years, I'm sure it will take awhile. I was told rule of thumb is 2 months of tx/year of illness. I've also read where it can take up to 4 years of tx. I think my LLMD started me on only a 6-week course to see if I respond and if not, switch them. Does this make sense?
Posts: 46 | From Wisconsin | Registered: Sep 2006
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Vermont_Lymie
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Hi Kawai,
That certainly makes sense -- good luck and please let us know how you are doing! I hope you respond well to the abx.
For me, 10 days of doxycycline was a life-altering experience -- I felt that much better from it (after 3-4 days of major herxing which started on the second day). But then I switched to amoxicillin 3 g/day, and all my symptoms have been creeping back.
So, it seems that different antibiotics can given a profoundly different impact.
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