Medical Questions > Conditions and Diseases > Multiple Sclerosis Forum

Multiople sclerosis and Lyme disease

If you have MS were you tested for Lyme disease at any time?
Yes or no?
If tested, positive or negative?
50%  50%  [ 2 ]
50%  50%  [ 2 ]
Total Votes : 4
Hello:

I've been interested to hear from people who were diagnosed with MS and later found to have Lyme disease. Evidence for any link seems to be largely anecdotal and I'd like to find out more. Can I ask any MS sufferers if they have
(a) been tested for Lyme disease,
(b) exhibited the characteristic "bullseye" rash (seen in less than half the cases, unfortunately),
(c)been bitten by ticks or
(d) are at high risk (area with high prevalence of Lyme, work outdoors, practice outdoor pursuits such as hiking).

Here in Scotland we have one of the highest rates of MS in the world as well as general ignorance of Lyme disease (a growing problem, with 300 cases reported in 2009). Nobody knows why and while this possible link has been suggested many times before, it doesn't seem to have been laid to rest one way or the other. Any responses welcome.
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First Helper lymegaltn
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replied May 29th, 2011
I was diagnosed with RRMS in June of 2009 after two episodes of diplopia and two hospital admits. In early 2010, I tried the experimental CCSVI procedure. When that failed to show any signs of stenosis, I signed up for a clinical trial at the National Institutes of Health. In Jun 2010, I received another confirmed "MS" diagnosis. I started Copaxone treatment, but still had a nagging suspicion that I was missing something, and things were getting worse in my body.

Several months later, my older sister started having neurological issues and after several specialists, was diagnosed with late stage Lyme disease. I immediately went to an Infectious Disease doc who diagnosed me with the same. I started treatment for Lyme and have never looked back. It's scary to me to think of all those who are getting a "confirmed" MS diagnosis who really have some other underlying condition.
Jen
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Users who thank jenf for this post: Mitchellaid 

replied June 27th, 2011
Dear Jenf:
I'm happy to hear that you and your sister turned out to have been misdiagnosed. Unfortunately Lyme disease isn't always diagnosed as MS (the other respondent to my survey turned out to be negative) but I want to help publicize cases like yours. We're trying to raise awareness of Lyme here in Scotland (it's pitiful, despite the fact that we have one of the highest MS rates in the world, nobody knows why).

Can you suggest why a survey like mine would get so few responses? Should I change the phrasing?
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replied June 27th, 2011
Dear Jenf:
I'm happy to hear that you and your sister turned out to have been misdiagnosed. Unfortunately Lyme disease isn't always diagnosed as MS (the other respondent to my survey turned out to be negative) but I want to help publicize cases like yours. We're trying to raise awareness of Lyme here in Scotland (it's pitiful, despite the fact that we have one of the highest MS rates in the world, nobody knows why).

Can you suggest why a survey like mine would get so few responses? Should I change the phrasing?
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replied May 30th, 2011
Hi Jenf:

I'm absolutely delighted to hear that you found this out and are on the mend. I hope a lot of other people can contribute stories like this and vote in the poll. It's shocking to think that are people out here with no hope who might be cured if MS was indeed misdiagnosed.
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replied June 1st, 2011
Hi - quite a few people have viewed this so far but nobody's participated (and only one comment). If this question needs re-phrasing or could be presented better coudl somebody let me know? I apologise for the misspelling of "multiple" - can I change this?
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replied June 8th, 2011
Hi I voted there but the phrasing is off I think. Yes I was tested. The results came back negative.
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User Profile
replied October 5th, 2011
Experienced User
Hi Mitchellaid Thank you for your post. I wasn't going to respond because I was not diagnosed with MS but Fibromyalgia and then Lyme. Ten years ago I was tested for Lyme and it was negative. I still test negative for borrelia but positive for ehrlichia (HME). I did NOT have a rash which is common with ehrlichia. I think the meningitis I had 10 years ago is linked to the infection which is also possible. I do not remember being bit but I can account for 5 different scenarios that could possibly explain exposure. I could have gotten it when I was little in South Carolina or fishing in Idaho. I rescued a puppy with a severe tick infestation and got the Meningitis on a cruise to Mexico. Best wishes.
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replied June 27th, 2011
Hi Trisha:
Thanks for your message. I only got two replies and maybe the phrasing is indeed off. Can you make any suggestions for changes?
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replied August 1st, 2011
Hi everyone - nearly 600 people have viewed this but only two voted or posted a comment. Doesn't anyone have something to contribute? I have managed to attract some official interest and it would be very helpful to get more feedback.
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replied August 24th, 2011
no lesions on MRI could it still be MS?
I would be interested to hear more on this subject. I have been ill for a long time. Very strange symptoms started when i was 35, now I'm 47. Had an MRI in 2008 that showed no MS lesions - therefor no MS. However, my symptoms continue to get worse over time with definite episodes when things are much worse and others that i feel completely fine. After researching myself, I realized that my symptoms also sound a lot like Lyme or Lupus. Very upset that no one can figure out what is wrong with me. Any suggestions?
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replied August 25th, 2011
lyme
I have been tested for MS and was told I didn't have it (no lesions)
I do have lyme (and think if I had not figured it out would have become MS)
I did not find a tick or have any rash or bullseye
I am a high risk person b/c I hike, bike etc. and outdoors all time in TN

Please know that Lyme disease is a clinical diagnosis (cannot rely on the Lyme test only as it may often be incorrect)-- must review recent health history and make note of all the symptoms and issues and find a lyme literate Dr. to determine if you need treatment. My test flagged a few lyme band antibodies as "H" high and even erlichiosis but I had some doctors dismiss it saying it wasn't enough to be Lyme and to see another Neuro!! I'm 35 and have been super healthy all my life then suddenly had a bizarre list of issues that all popped up during a stressful time recently. I spent $$$ on MRI's, CT scans, specialists etc. and it wasn't until I researched on my own that I realized it might be LYME and not MS! I actually got to a point where I couldn't walk -but now in my 2nd month of treatment I'm walking and doing MUCH better but still have to keep taking antibiotics + vitamins and do special lyme diet. Have to build up immune system to kill off the lyme so your body is in charge not the lyme - only way. PLease see the movie UNDER OUR SKIN -- very informative.

Chattanooga, TN
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User Profile
replied October 5th, 2011
Experienced User
Hi lymegaltn, Thanks for sharing. I am curious about how long you have been sick. I also have ehrlicia. Did you have any severe symptoms at first that you can relate to exposure? I had meningitis ten years ago and have not been the same since. When the pain did not go away, I was diagnosed with Fibromyalgia. I finally found out about the lyme disease and feel there is a strong possibility that the ehrlichia caused the meningitis. How long do you think you were sick before you received treatment? I started treatment in Feb. and hoping I will get better soon. The movie you suggested was so profound for me. I saw myself in each patient and am thankful for all the specialist's info. It was a helpful tool to share the movie with my husband to show how serious lyme disease can be and why treatment is controversial. I think it helped him to be more compassionate and to not see me as a hypochondriac. Best Wishes.
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User Profile
replied October 5th, 2011
Experienced User
Hi lymegaltn, Thanks for sharing. I am curious about how long you have been sick. I also have ehrlicia. Did you have any severe symptoms at first that you can relate to exposure? I had meningitis ten years ago and have not been the same since. When the pain did not go away, I was diagnosed with Fibromyalgia. I finally found out about the lyme disease and feel there is a strong possibility that the ehrlichia caused the meningitis. How long do you think you were sick before you received treatment? I started treatment in Feb. and hoping I will get better soon. The movie you suggested was so profound for me. I saw myself in each patient and am thankful for all the specialist's info. It was a helpful tool to share the movie with my husband to show how serious lyme disease can be and why treatment is controversial. I think it helped him to be more compassionate and to not see me as a hypochondriac. Best Wishes.
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replied September 14th, 2011
MS Diagnosis - Lyme Test Positive
My wife was diagnosed with rhumatoid arthritis as a teenager, MS in her late 30's, and Chronic Fatigue Syndrome and Fibromyalgia in the 90's. She has suffered with multiple symptoms for many years. Two MRIs showed no lesions on the brain.

In 2009 our son suggested that she be tested for Lyme, since a friend had the same symptoms that resulted in a Lyme diagnosis. Our specialist for Chronic Fatigue Symptom sent us the test kit and our clinic drew blood for the test. It came back positive for Lyme. The specialist started my wife on antibiotics about a year ago and she has show steady improvement since.

We also recommend seeing the documentary UNDER OUR SKIN.

San Diego, California (now living in Peru)
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User Profile
replied October 5th, 2011
Experienced User
LymeSanDiego, Thank you for sharing your wife's story. It is encouraging to hear that after a long illness she finally received treatment and is getting better. I am clinging to hope that the treatment will get me better. Best wishes.
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replied November 15th, 2011
FM/MS or is it really Lyme?
I was diganosed with FM and MS in 2003/2004 MRI showed no lesions (but still dx with MS). I have multiple symptoms and they continue to get worse, I am 49 yo and most days my 80 yo Mother gets around much better than I do. I recall having mutilple tick bites years ago while on a camping trip, and having a rash for a few days. After continued treatment for FM & MS with no positive results I'm still on a quest to find out what is really wrong with me.... I know my doctors at mayo clinic have MISSED IT. I recently watched "under our skin" and I am a text book case/ poster child for Lyme.
Can anyone suggest to me where to go and or how to find the right doctor to test me for lyme and get the correct results?
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replied June 3rd, 2012
I'm going to have another try with the two questions at the head of this - if you have MS were you ever tested for Lyme and what was the result? It would really help if I could get more information on this - we have the highest rate of MS in the world here, and just about the highest level of ignorance about Lyme disease.
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replied June 7th, 2012
Hello, Mitchellaid. This is Gary, from Texas. I am 57 and was diagnosed with Primary Progressive MS in 2008. Over the years, my health has declined to the point that my mobility is severely restricted. After basically learning that there is no treatment for my kind of ms (none of the approved chemicals ever helped), I realised that people are in charge of their own health and it is up to us to find a cure. I turned loose of all of the huge medical/pharma/gov't ties and struck out on my own. Now, I am seeking all natural methods for healing. YouTube and Internet searches comprise most of my medical team. These, and holistic practitioners led me to an awareness of the links between Lyme, mercury amalgam fillings, and MS. I got tested for Lyme and am having all of the mercury fillings removed. I tested negative for Lyme but there is a high incidence of "false positives" and "false negatives". My naturopathic md disagreed with the lab and is treating me for Lyme and MS with intravenous injections of glutathione and phosphitydalcholine. As time progresses, I will post any beneficial results. I'm also newly aware of "Under Our Skin" and plan to study it.
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