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Posted 12/23/2007 10:53 PM (GMT 0)
Hi guys, I was wondering if anyone had any insight on this: I have been sick with Lyme since about 2002 (but I didn't know what it was), diagnosed in 2005, and I have been on antibiotics since then.

A couple of weeks ago I started getting really intense burning feeling and pain on my right side. I thought it was a Lyme flare, but it hasn't gone away. I went to the doctor (my PCP who is Lyme friendly but not extremely Lyme literate) on Tuesday. He did some basic neurological tests and said my right side is weaker than my left side,  and he also said that I have muscle weakness. He ordered an MRI and says he suspects MS. (My mom has MS.)

I know that Lyme can mimic MS and vice-versa. I have been in treatment for Lyme for 2 years. A lot of symptoms are gone, but some still remain. How do you know if they are Lyme symptoms or MS symptoms?

Does anyone have any advice? Thanks in advance.

Happy Holidays to all :)

Posted 12/24/2007 5:29 AM (GMT 0)
Hey Blue

Nice to see u! I"m so sorry it's for this reason, but happy u'r investigating this. Yes, many of the symptoms of Lyme and MS do mimic each other. There is no real way to be certain that one symptom is either MS or Lyme tho...other than to test for Lyme and rule it out. Since u've been dx'd positive for Lyme, is it possible u never really had Lyme, but had MS all this time?? I'm not too versed on Lyme and it's flares, but from what i've learned they are quite difficult to differentiat. With MS u can find u'rself getting better...symptoms either going all the way away or mostly away...and u can have residual symptoms that never really fully go away. U may go years without much or any issue...or u may be hit hard and that may never get better. So with MS anything is possible and determining a symptoms origin between MS and Lyme is almost impossible but for a clear dx and the interpretation of a doctor...who isnt always sure either. I know i cleared nothing up for u....i'm sorry....but i do think u'r on the right track in being tested and watched. As u prob already know, dx'ing ms is a process of elimination and can take a very long time sometimes. Don't get discouraged if this is true for u. Hang in there and get the answers u deserve. Again, i'm so sorry u'r here for this reason, but glad u are persuing this and asking questions. Do u have an appt set for the results of the MRI? Please do come back and let us know how u'r doing and those results. Take good care.
Posted 12/24/2007 7:06 AM (GMT 0)

Hey Bluebyyou,

I am sorry that after two years of treatment you are still sick.  That is scary.  I always thought that lyme was treatable but two years is a long time. 

Due to the fact that you are not yet diagnosed, I think you are asking a question that is impossible to answer.  I hope you are not diagnosed with MS. 

I do know one person, that is on here now and again, that has both lyme disease and MS.  I am hoping she reads this and responds for you. 

I can tell you about MS but I have no experience with lyme so I won't even attempt to answer you question.  I hope you feel better real soon.

Love and prayers,

Posted 12/25/2007 10:13 PM (GMT 0)
Hi Rhonda and Gretchen, thank you for your replies.

I tested positive for Lyme and bartonella (another tick-borne disease), so that confirmed my Lyme diagnosis. My primary told me that Lyme can cause secondary diseases, such as MS, when I told him about a month ago that sometimes I wake up in the night and can't feel/move my legs for a little while. I'm having the MRI on Thursday. I'll keep you guys posted. Thank you again :)

Posted 12/27/2007 1:52 AM (GMT 0)

Bluebyyou,

What type of Lyme test did you have done?  Was it through Igenex or the standard ELISA?  I have had all kinds of weird symptoms for 8 years now, every test that I had done have been normal.  Thanks!!  Hope you are on your way to recovery!!  Jen

Posted 12/27/2007 3:57 AM (GMT 0)
Hi Jenny, I was tested through Igenex.

Posted 12/27/2007 9:16 PM (GMT 0)
Babybyou,  Thanks!!  Hope you have a nice New Year!!

Posted 12/29/2007 3:34 AM (GMT 0)
The MRI was normal! Which is good news, I think? You have to have lesions before you can be diagnosed, right?

I'm not as confused as I was before, but I am still somewhat unsure of what to do/think.

Posted 12/29/2007 4:17 AM (GMT 0)

Hey Bluebyyou,

I am so glad your MRI is normal.  You have an excellent chance that you do not have MS with a normal MRI.  You should be very relieved.  Good luck and feel free to post and ask questions.

Love and prayers,

Posted 12/29/2007 11:29 AM (GMT 0)

bluebyyou said...
Hi Rhonda and Gretchen, thank you for your replies.

I tested positive for Lyme and bartonella (another tick-borne disease), so that confirmed my Lyme diagnosis. My primary told me that Lyme can cause secondary diseases, such as MS, when I told him about a month ago that sometimes I wake up in the night and can't feel/move my legs for a little while. I'm having the MRI on Thursday. I'll keep you guys posted. Thank you again :)

With clear diagnoses of both Lyme and bartonella, and a  clear or negative MRI, it seems quite reasonable that your symptoms are unfortunately a result of having a long-term chronic disability due to the tick-borne diseases. Were the doctors able to determine how long you might have had those diseases before you were diagnosed with them?  They can cause long-term neurological damage which "looks like" MS, but without lesions appearing on an MRI.  In fact, if they remain in your system for a very long time (which can happen with those illnesses!), they can eventually cause lesions on an MRI as well..but generally lesions caused by the tick-borne illnesses are in different areas than those typically cause by MS.

Usually for those of us with MS who "can't/feel move (our) legs" the inability lasts for much more than "a little while" -- measured in days, weeks, through a major exacerbation, or sometimes (like for me), "forever".

I'm sorry you're having to deal with a chronic illness and disability, whatever the cause!

Posted 12/29/2007 6:19 PM (GMT 0)

blue - Good question and as someone who is in a similar situation (MS, Lyme or both??) one I am always asking too.  The Drs do not seem to know whether my problems are untreated lyme for so long (possibly 30+ yrs) or lyme that has caused  MS or an MS like illness.  I did test CDC positive for lyme. 

A question for you guys - How are MS lessions or their location different from lyme lessions?  I did not know there was a way to differentiate.   Does anyone who is dx with MS have a normal MRI?

Thanks for the info and have a Happy New Year everyone. 

Posted 12/29/2007 9:39 PM (GMT 0)

Here is a website that discusses the location of lesions and the kind of disability they can cause, in people with MS:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12880785&dopt=AbstractPlus

Here is another: http://www.emedicine.com/RADIO/topic461.htm

You have to scroll down the page a bit to get to the section on MRI's, where you'll find this:

"Lesions may be located anywhere in the CNS white matter....more commonly the periventricular white matter, brainstem, cerebellum, and spinal cord..."

Here's a website that discusses Lyme disease. I could not find anything in there that suggests that Lyme disease leaves lesions that are evident on an MRI (but then, I didn't read it very thoroughly, so could have missed it!)

http://www.emedicine.com/EMERG/topic588.htm

I just KNOW that I'm going to open a can of worms, but this IS a "multiple sclerosis" board. When I read the symptoms of Lyme as presented on this site..and it talks about early stages as well as late stages, early diagnosed and treated Lyme and undiagnosed for years Lyme..

I really see VERY little similarities between it and MS.

But as I always say, I'm not a doctor nor health professional, nor do I pretend to be one.

Posted 12/30/2007 3:14 AM (GMT 0)

uppitycats said...

bluebyyou said...
Hi Rhonda and Gretchen, thank you for your replies.

I tested positive for Lyme and bartonella (another tick-borne disease), so that confirmed my Lyme diagnosis. My primary told me that Lyme can cause secondary diseases, such as MS, when I told him about a month ago that sometimes I wake up in the night and can't feel/move my legs for a little while. I'm having the MRI on Thursday. I'll keep you guys posted. Thank you again :)

With clear diagnoses of both Lyme and bartonella, and a  clear or negative MRI, it seems quite reasonable that your symptoms are unfortunately a result of having a long-term chronic disability due to the tick-borne diseases. Were the doctors able to determine how long you might have had those diseases before you were diagnosed with them?  They can cause long-term neurological damage which "looks like" MS, but without lesions appearing on an MRI.  In fact, if they remain in your system for a very long time (which can happen with those illnesses!), they can eventually cause lesions on an MRI as well..but generally lesions caused by the tick-borne illnesses are in different areas than those typically cause by MS.

Usually for those of us with MS who "can't/feel move (our) legs" the inability lasts for much more than "a little while" -- measured in days, weeks, through a major exacerbation, or sometimes (like for me), "forever".

I'm sorry you're having to deal with a chronic illness and disability, whatever the cause!

In no way did I intend to minimize the suffering of people with MS. My mother has MS, and it has been a brutal experience for her and our family. I was just stating the newer symptoms I have been experiencing that lead my doctor to suggest the possibility of MS.

 Best wishes :)

Posted 12/30/2007 3:19 AM (GMT 0)

Gretchen1 said...

Hey Bluebyyou,

I am so glad your MRI is normal.  You have an excellent chance that you do not have MS with a normal MRI.  You should be very relieved.  Good luck and feel free to post and ask questions.

Love and prayers,

Thank you for the kind words, Gretchen! :)

 

Posted 12/30/2007 3:39 AM (GMT 0)

uppitycats said...

Here is a website that discusses the location of lesions and the kind of disability they can cause, in people with MS:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12880785&dopt=AbstractPlus

Here is another: http://www.emedicine.com/RADIO/topic461.htm

You have to scroll down the page a bit to get to the section on MRI's, where you'll find this:

"Lesions may be located anywhere in the CNS white matter....more commonly the periventricular white matter, brainstem, cerebellum, and spinal cord..."

Here's a website that discusses Lyme disease. I could not find anything in there that suggests that Lyme disease leaves lesions that are evident on an MRI (but then, I didn't read it very thoroughly, so could have missed it!)

http://www.emedicine.com/EMERG/topic588.htm

I just KNOW that I'm going to open a can of worms, but this IS a "multiple sclerosis" board. When I read the symptoms of Lyme as presented on this site..and it talks about early stages as well as late stages, early diagnosed and treated Lyme and undiagnosed for years Lyme..

I really see VERY little similarities between it and MS.

But as I always say, I'm not a doctor nor health professional, nor do I pretend to be one.

That's interesting; my mom has MS, and I have Lyme, and she and I have many similar symptoms. When I read the lists of MS symptoms on MS websites and the lists for Lyme disease symptoms on Lyme disease websites, I notice quite a few similarities there as well. I am certainly not saying that the two conditions are one in the same-- or are even connected-- but given the similarities, it makes sense to me that doctors would want to explore all avenues.

Again, best wishes :)

Posted 12/30/2007 3:43 AM (GMT 0)

KIMC said...

blue - Good question and as someone who is in a similar situation (MS, Lyme or both??) one I am always asking too.  The Drs do not seem to know whether my problems are untreated lyme for so long (possibly 30+ yrs) or lyme that has caused  MS or an MS like illness.  I did test CDC positive for lyme. 

A question for you guys - How are MS lessions or their location different from lyme lessions?  I did not know there was a way to differentiate.   Does anyone who is dx with MS have a normal MRI?

Thanks for the info and have a Happy New Year everyone. 

Hi Kim! :)
Posted 12/30/2007 11:59 AM (GMT 0)
Hi, Bluebyyou.  Pleas e understand that I don't intend to any way dismiss or diminish your battle with Lyme disease.  Once it turns "chronic" as yours seems to have, it can be a very ugly and painful and debilitating struggle.  My husband had a relatively minor case of Lyme, and was ill for MONTHS with it, and then had a reoccurance that was serious as well.

I do think that "from the outside", from what patients have to deal with (numbness, tingling, neurological problems, etc.), some of the symptoms of Lyme and MS do seem similar. But I also think they have very different origins, the treatments are different. Lyme shows up in the bloodstream for example, when proper testing is done. MS does not.  And indeed doctors SHOULD do all sorts of testing to rule in..or rule out...diseases that can be confused.  Many of us with MS have been tested for Lyme to be sure that wasn't what what cousing our symptoms, and I've often encouraged people who come to this (and other) MS sites with symptoms to be sure they've been tested for Lyme (and other diseases, like lupus, rheumatoid arthritis, etc.). 

I still think that careful reading of non-biased sites for both Lyme and MS describe very different sorts of disease.  But that's just me.

Posted 12/31/2007 11:25 PM (GMT 0)

Dear bluebyyou,

I was diagnosed with MS in April 2005 (based on two episodes of double vision and lesions on brain MRI) and with Lyme Disease one month later in May 2005 (initially tested through IGenex and just recently received a call from the PA Dept of Health that I now meet the CDC case definitions based on my November Lyme test through IGenex).   

I will tell you that over this summer I experienced a feeling of numbness down the entire right side of my body, from my head to my toes, with difficulty walking and writing on my right side.  It lasted approximately three weeks with subsequent balance problems that continue to be a troublesome.  Although my Lyme dr told me at the time it was a flare/Herx reaction to the Limited Cowden (herb) protocol I was on, it felt like something entirely different from the flares I had in the past.  A follow-up brain MRI in August of this year subsequently showed a new lesion in my cervical spine.  My Lyme dr is now telling me that he believes once the lesions have moved into the spinal cord, that it is a "Lyme-induced MS."  I have an appt to see a neurologist at Stony Brook in January to see if she can provide any clarification and recommendations as to how to proceed from here.  I have not taken any MS meds yet and am now considering that as a possibility.  I have also been advised to try IV Rocephin, which I have not yet had (although was on oral antiibiotics for approximately 1 1/2 years).  The neurologist at Stony Brook is supposed to be both Lyme and MS literate, so I'm hoping she can provide me with some good information so I can make an informed decision regarding my future treatment.

Personally I don't know how you can tell which symptoms are Lyme and which are MS.  I speak to people who have MS and others who have Lyme and I feel like I'm talking about the same thing to both groups.  It's so confusing, but I keep praying that we'll have a scientific breakthrough for either Lyme or MS in the very near future. 

Take care. 

Posted 1/1/2008 4:35 PM (GMT 0)

LymeFrustration

My story is similar to yours.  Dx with MS in 1999 and Lyme in 2005. I have spinal cord lessions, and my LLMD also thinks Lyme induced MS.  I would be interested in knowing who the neuro you are going to as I need to see a LL neuro.  No one can seem to figure out what is happening with me.

I am 3 weeks into IV Rocephin.

Could you email me the name and contact info? 

Thanks & Happy New Year  

Posted 1/2/2008 12:57 PM (GMT 0)
Hello Bluebyyou. I'm sorry that your going through all of this. I sincerely hope that you get answers soon. I had recently read that undetected lyme can result in MS later on. I cannot say if the site I read this on is reliable or not.
As Uppitycats stated (i do not know how to paste others statements as you all do so well pls forgive that), when we are being dx'd for MS they do try to rule out lyme's along with many other diseases. I think that mine was western-blot and elisa? It was negative and I've often wondered if tested early what are the chances of a false negative on lymes.
Uppity, even though you do not profess to be a healthcare professional , you seem to be highly intelligent about all of these things, have you ever thought about going into the healthcare profession yourselfl? Btw, i'm sorry that your numbness was "forever". I have MS and have experienced the numbness/inability to move but it only lasted for minutes, and was told this was "temporary paralysis" from MS.

I've never heard of IGenex. Is this a blood draw, and how might I have this test? Which doctor could I ask for it? The reason I'm interested in being retested is joint pain that has came within the past 6 months.

LymeFrustration, since it's moved to your cervical spine (and i'm sorry that it has) and your doctor thinks this means it's turned to MS. Is this unique to lyme-ms patients? Since that question I just typed didn't seem to say what I'm attempting to say i'll try again: An Ms patient with cervical lesions is not considered then to have Lyme's correct. Since MS is a disease of the brain and the spine?  What are the antibiotics used to treat lymes?


Sorry that i'm not as educated as the rest of you and thanks for any and all answers.

Blue, I'm very happy that alot of your symptoms did disappear! I'm thankful that any symptoms leave anyone.


thanks to all,

kiera
Posted 1/3/2008 6:22 AM (GMT 0)
Hi Kiera,

I bumped up a post on the Lyme forum called *The Basics - Newbies, check this out* for you.  It answers some of the questions you asked.  I wish you the best of luck and improved health in 2008.

Alexia

Posted 1/3/2008 2:37 PM (GMT 0)
Kiera - It is confusing, Lyme and/or MS, even to me. I was initially told I had MS, but the doctors I was seeing locally at the time refused to rule out Lyme Disease. I felt it was important to do this, so I found a way to get tested on my own. Once my Lyme test came back positive, I found an out-of-state LLMD and proceeded to treat the Lyme with a variety of oral antibiotics, including Ceftin, Minocycline, Biaxin, Doxycyline, Amoxycillin, Zithromax, etc. However, just because I am diagnosed with Lyme doesn't mean I don't have MS and vice versa. I just made a personal decision to treat the Lyme first and see how I progressed, figuring time would tell. However, now that I experienced the numbness down the right side of my body for that three week period, and now that the lesions are in my spinal cord, I am considering treating the MS as well (Copaxone), while at the same time I am also considering trying the IV Rocephin for the Lyme Disease.

"Lyme-induced MS"--when my doctor told me this, it was the first I had heard this term used, so not sure if it is common or not, although I see KimC was also told the same thing.
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