Lyme and MS? Need help???

[skarey]

I've posted here before and am back to ask a few questions.  I was being evaulated for MS since May 07, and ended up getting a lyme diagnosis this July.   I've been treating with abx for 2 months now and have not seen improvement in my symptoms.  So naturally it brings me back to MS.  

I've seen two neuros who have both said no MS due to clear MRI's and normal neuro exams (besides brisk reflexes).  A lot of my symptoms resemble MS such as burning, dizziness, brain fog, weakness, altered sensation in feet, tingling of hands, and fatigue.

I have other symptoms that as far as I know aren't related to MS such as rash that comes and goes (although I havent' had it in several months), burning/swollen tongue, mouth sores,  joint pain (especially in ankles, and hands.), neck and shoulder pain, hypoglycemic "like attacks", muscle aches, chills at night (very seldom), and ear pain.  I've also noticed my hair is falling out in the shower.     I have NO vision issues except for occasional eye pain, and no sensitivity to heat.  Actually a hot bath, or hot weather makes me feel better.  My symptoms come and go and are always changing.


I've been evaulated for autoimmune diseases as well and those are normal.  I've had a WB done through Quest that showed a few Reactive bands for lyme but neg overall, and a POS Igenex test for lyme. And a VERY low CD57 score.  My lyme dr said that he's confident in his diagnoses and that MS is a differential diagnosis.  But I still can't help but wonder, especially when I'm not improving on treatment.  My lyme dr asked about my vision...  Do most MS patients have vision problems?

I've never had a LP or Evoked Potentials, as the neuros said it wasn't necessary.  

Can anyone comment on this?  What symptoms in your opinions DON'T present like MS?  Should I be concerned???  

Everyone keeps saying I need to be patient and give my lyme treatment time.  According to my lyme tests I have chronic lyme and have had it for a long time.  

Thanks for your help.  

[vicmid1]

Hi
This sounds so much like Lupus...I presume you've had ANA and anti DNA bloods done? Not all lupus sufferers have positive bloods and a good rheumy will dx on symptoms alone. I am sure your rheumy must have considered this..if not, is it worth revisting?
Vic xx

[skarey]

I've been tested for Lupus twice and my tests keep coming back NEG.  I've seen two Rheum.  One is my lyme Dr... he's actually a RHEUM with a special interest in lyme.  However I have no sensitivity to the sun, I actually feel better in it.   Don't most lupus suffereres do bad in the sun?

Thanks for replying.  I appreciate it.

[Lulu54]

Skarey,
As you know from all of the other Lyme forums that you post on - treatment for Lyme can take a very long time.  You need to be patient and wait it out... you will get better eventually but it may take up to a year or so to be rid of all those critters in your body.

You have been tested enough to reassure you that this is Lyme and not this Miserable disease.  Put the thoughts of MS to rest, ok?

[skarey]

I'm trying LuLu:)  I guess maybe I'm just getting frustrated and was hoping for some improvement after months of abx.  

Thanks for your input.

[vicmid1]

It sounds like your doctors have been working hard to get a dx here...you're right about the photosensitivity that comes with lupus, this is one of the things that put the dr's off the lupus scent with me..it was the skin problems you mentioned that triggered my thoughts as well as the other stuff.
It must be really hard to accept a dx when you are not totally convinced yourself...it's worth giving the medication more time and maybe try to settle with the dx of Lyme disease and give yourself a chance to come to terms with it.
It seems that with all of these AI diseases that everybody's symptoms are different and it's easy to read someone's symptom list and think 'hey, that's me' but then to be told that it's something else is just soooo confusing and mind numbing actually.

Good luck with it all
Vicxxx