NIH study recruiting new patients

[SOONERMOM]

Combined Clinical, Immunological and Virological Assessment of Patients with Multiple Sclerosis (MS)

http://clinicalstudies.info.nih.gov/detail/A_1976-N-0021.html

I thought some of you limbo-landers might be interested in this.  I don't know if I would be excluded with a + western blot for lyme, but I am going to call.

I brought a copy of my LP results to my last appointment w/my lyme doctor and he said he doesn't usually see people with any O-bands....that I "could" have 2 diseases going on.

I guess at least he is being open and honest with me.  I have already had a few doctors tell me that they thought that I had MS, what is one more,,,right???  (I was never diagnosed)

Anyway, I am doing well and hope all of you are too!!

Stacey

[SOONERMOM]

I am SO glad that you might get the opportunity to be a part of this study.  I live too far away, so I am not able to participate.

Be sure and keep us updated about this!

Stacey

[Sarahsmom46]

Thank you so much for posting the link to the NIH protocol.  I mentioned this to my neuro yesterday and he said that it would be worthwhile for me to look into, which I did today.  I called and they took my contact information and will call back later with more details.  Heck, I live only a subway ride away from the NIH and if my doctor thinks this is worthwhile for their research, the so do I.  Maybe I might learn something about what is going on with me from it.  Wouldn't that be icing on the cake.  Thanks again for the information.  

Julie

[Quixotic1]

Hi, Girl, good to see you.  Thanks for bringing this up to us.  How are you doing?

And yes, I don't see any reason under the sun that a person with MS cannot be infected with the Lyme bug, nor any reason that someone with Lyme or a history of Lyme Disease could not also develop MS.  It would definitely bite to have both, but they are not mutually exclusive (and you know my firm belief that they are not the same disease).

In my reading, Neuroborelliosis with Invasion of the CNS can have O-Bands.  I do not know, however, how common it is.  Generally, most of my reading says it is few bands rather than many.

We have had at least two people here who initally thought they had Lyme, failed to improve on antibiotics given by LLMDs and went on to appear to have MS or a mimic.  And you represent one of the opposite sides, who initially thought you had MS, but tested positively for Lyme.  Thus you (and SpeechGeek) stand as strong reminders to look thoroughly for the mimics before settling with an MS diagnosis.

I do hope you stop in more often!  You are missed and I often wonder about you.

Quix

[sllowe]

Hey Stranger,

I hope I get to say hi before you shuffle away ...you going to stick around tell us what the Neuro has to say? I am glad to hear that you are responding to the meds for your Lyme and that you are feeling better - I hope it continues.

I thought the 1 O-band was considered negative, but have to re look at the chart.  We have one now on our health pages, not sure if you've had a chance to look.

See you around,
Shell (though you'll probably remember me as 'SL')

[SOONERMOM]

I am currently taking zithromax and feeling really good.  I still have some numbness, but wonder if it just permanent at this point.  It is much less pronounced than before.  The oppressive migraines have left and so has the spasticity.

My western blot was CDC positive (IgM) . I had 7 positive bands and the IgG was negative, but I had 3  positive bands.  So with the test and the response that I have had to the antibiotics, I consider it a definite diagnosis.

It's funny that my Lyme doctor took the O-band so seriously when my GP said "that's great" that the overall test was negative b/c it was <4 bands.

I know that CNS infections can cause O-banding, but I guess just the fact that my Lyme doctor has treated thousands (maybe it was over a thousand??) of patients and this is unusual to him says a lot.

It isn't uncommon for him to see people with brain lesions.

I did read some information about the type of 0-banding that I have, one in the CSF and none in the serum:

"The occurrence of single monoclonal bands in CSF is uncommon. Approximately 50% of cases of monoclonal CSF bands occur without a corresponding serum band. Two thirds of patients with solitary CSF bands revert to a normal polyclonal pattern over time or retain the solitary band without evidence of disease. The remaining one third subsequently develops multiple sclerosis or another demyelinating syndrome."

I was really hoping that my days at the neuro's office were over.....sigh....I should probably get a follow up MRI at some point.

I  might never know for sure what all has happened in my brain.  I guess I am thankful that I am better and doing well.  I think I (and probably some others here) should be studied.

take care,

Stacey

[Momzilla]

Hey, Stacey!  It's so good to hear you're doing well!  We've missed you!!

So, you have a positive Western blot?  How do I not remember that?  I am having one of those weeks, I guess....  Do you have a definite diagnosis of Lyme, then?  How are you feeling?  Are you getting treatment?  (LOVE the new hottie pic you put up!)

Thanks for the info.  Interesting.  Interesting, too, about the O-bands.  I'd like to hear what Quix has to say about that.  I think she's commented on O-bands in Lyme before.  Catch us up on how you're doing!

Feel well!

Zilla*