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becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 5/28/2009 6:02 PM (GMT -6)   
has anyone here been diagnosed with both? i've read that minocycline treats both. i did doxy and amox for lyme. my neuro wants to start tx(after a second opinion)for ms because my lesions are growing and multiplying, despite the fact i feel pretty good right now. i'm taking all and any opinions and experiences into account. thanx in advance.

Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/22/2009 10:25 PM (GMT -6)   
I was going to come on here and ask the same question. I have Lyme disease. (No I am not here to discuss that, I promise!)
 
I just noticed that most of my worst symptoms that are not getting better appear to be MS like symptoms. I actually thought I had MS before I found out it was Lyme. It is amazing at how similar some of the symptoms are! I wonder if I could have both??
 
Ok so does anyone with MS have this symptom? If I try to step into a hot tub it feels as if you lit me on fire! Also if something hot (like grease) splashes my arm it sends an electric like feeling through my body.
 
Some of my other worst symptoms are bladder issues, swallowing problems, fatigue, heat intolerance, cognitive issues, numbness, burning & tingling, dropping things, balance problems & my vision problems are getting worse. I have other symptoms as well and have a CDC positive Lyme test. I just wonder if I have both? My fatigue is very debilitating and worse with heat!
 
Thanks,
Amy smurf

Post Edited (Amy C) : 7/22/2009 10:54:06 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3517
   Posted 7/22/2009 11:01 PM (GMT -6)   
Yeah that is a very controversial subject here.  We have had lyme board members on several occasions basically call us idiots for not just going ahead with lyme treatment.  I can't really help you.  It would be better if you posted that question on the lyme board.  There are several members that were diagnosed with MS and then found out it was lyme. 
 
I have MS and just MS.  I have just had my two year MRI check.......no new lesions in two years.  Some of my lesions are smaller.  I feel great. I do have symptoms that are related to the brain damage I have.  Those symptoms do not come and go.  I haven't had a flare in over two years.  I am on an immunosuppressant/modulator.  If I had lyme, that would make my symptoms worse. 
 
You can have MS and not have lyme.  You can have lyme and not MS.  And many feel you can have MS that was triggered by lyme.  The big question is......if the MS was triggered by lyme, will the MS improve with lyme treatment?  Or once that autoimmune switch has been triggered, does the MS then become a permanent result of the Lyme infection?  Unfortunately, no one knows the answer. 
 
Many people with MS are heat intolerant.  I cannot regulate my body temp. when it is warm.  A hottub is out of the question, as are long showers or hot baths.
 
I truly hope you find relief with your symptoms after treating the Lyme.  I know that chronic Lyme is horrible and it is a long, long row to hoe.  Good luck.    
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/22/2009 11:51 PM (GMT -6)   
Yes I am sure there have been some troubles with Lyme people on here. I am sorry for that and that is not my intention. I truely thought I had MS before I found out it was Lyme.

I just have to wonder if my worst symptoms are not getting better with treatment and my worst symptoms are MS like symptoms then just maybe I have both? Or MS triggered by Lyme?

Just thought I would come here and read some of your postings to see if I should look into this further.

Best of luck to you and everyone on here! Any chronic illness is horrible :(
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3517
   Posted 7/23/2009 12:01 AM (GMT -6)   
Amy,
 
You are always welcome to post and read here.  If you have any questions, feel free to ask.
 
MS and lyme are complicated .........they have such similar symptoms as you noted but are treated in totally opposite ways (usually).  There is some indication that antibiotics can treat MS.  In the U.S. that is not standard.  The typical treatment is one of four drugs that are immuno-modulators or drugs that attempt to keep your immune system from attacking the myelin in your brain.  Specifically, the T-cells like to wander across that blood/brain barrier and randomly shred myelin. 
 
If you have a postive dx for lyme, then stick with that treatment.  What you are experiencing is probably lyme and not MS.  Just keep track of your symptoms.  MS typically (but not always) moves pretty slowly.  Many people do not treat for MS at all and just live with that slow progression.  The four current (mainstream) treatments for MS are all shots. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 7/28/2009 8:57 AM (GMT -6)   
i still am not sure what i'm going to do. 4 out of 5 doctors say i should start ms tx because of where my lesions are located, pos csf,and flunked the evoked potentials. the llmd(i don't like) is the only one to blow off the ms diagnosis and recommends i continue abx. the others say several months of abx should be sufficient. the test for lyme is only for antibodies and will remain positive for a long time after tx. do i start ms tx now and hopefully ward off future relapses or continue tx for lymes take my chances of getting worse? will the tx for ms make lyme worse? sorry for rambling, good thing i can't type as fast as my jumbled thought run.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3517
   Posted 7/28/2009 10:42 AM (GMT -6)   
I am not sure, Becky.  That is a tough spot you are in.  I have heard that you can do both.  What treatment will you be starting?  I know you can do antibiotics with any MS treatment.  I have had other various infections, the occasional sinus infection etc. and I have taken antibiotics without concern for my MS treatment. 
 
I can't imagine that you could not take both!  I am sorry your LLMD is nto being supportive.  I know that there are people out there (your llmd?) that believe that MS doesn't exist and that it is just misdiagnosed Lyme. 
 
Good luck!  Please keep us posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/4/2009 1:37 AM (GMT -6)   
Hi Becky & Amy,

I have SPMS and am taking Low Dose Naltrexsone and find it very helpful and am seeing a lot of improvements. Someone with Lyme was posting a little while ago about LDN and saying she really wanted to try it. The thing is if you want to try it you cannot combine it with most of the MS drugs so the time to try it might be now before you start a drug programme. It works really quickly so you might need to only take it for a few months to know if you want to continue or not. It is a very low dose and seldom produces side effects. But You need to research it yourself and make your own decisions.

Good luck. wink
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 9/18/2009 2:05 PM (GMT -6)   
my main neuro has said since i'm not showing any worsening, to continue with the vit d and i'll see her in a few months. possible follow-up mri's before starting any new tx. other than not being able to read as much as i used to, i haven't had any major changes in my life i consider myself quite lucky.
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