Hi Jason,
I was thinking to wait on the LP since you were lined up w/an MS Specialist. I know there is controversy over the relevancy in it, and I don't want to get into that, but Lyme testing was run on my CSF. I'm glad they did it despite the relevancy-contro because to me, I now know, Lyme is not in my blood, nor is it in my spinal fluid. I have no doubts where that is concerned.
This specialist will know what to run to rule in, or out disease. When are you going?
Be well,
Shell
Thanks Bleuskies,
I believe the LLMD also thought that the LP wasn't that helpful. I saw an MS specialist, who like the neuro, does not believe I have MS. He thought it was quite good for determining Lyme bug. Hard to get a straight answer.
Mri's can wax and wane when MS is oncerned. LP is useless for lyme and they ve made major links to lyme and MS- Your doc should be testing you for HHV6-V7 a virus linked to lyme and MS, but treatable. Also EBV and CMU. You really sound like a classic chronic lyme case. If you receive a dignosis of MS, don't settle for that dignosis, demand labs from IGENIX or MDL for a complete lyme workup. Those other infections I mentioned are common but need to be addessed when dealing with lyme. . I wouls seek out a good Lyme literate MD- LLMD. They are very hard to find but the LDA has a good website to help search for the closest to you. There are none of any worth in the NE area- NY, CA, or SC. Ask for a copy of your western blot and research it. You could hav one pos. band and you have lyme. I had none and walked around with mis-dignosis's for over 15 years because of the bogus testing, and one diag was MS- one day i had it and then I didn't. Read Cure Unknown, and purchase Under our skin, a new documentary and you wll understand why this disease gets missed all the time. Politics, Egos etc... but there are so many common's I see constantly. Lesions on the brain happen with lyme- they come and go. The neuro and gasto stuff and joint pain etc are all classic lyme. There are far too many people waling around withlyme and have no idea. Fibro, Chronic fatigue, all bogus dignosis Doctors should be saying I just don't know instead of :it's not lyme" when there is far too much information out there directly liked to lyme. The problem is, the political environment in treating it- it's shameful.
Thanks for the suggestions.
Can someone comment on what is the recommended full set of tests from the LP (when MS/Lyme are suspected)? Thanks.
Hey Jason -
Hmmmm, well, I would not delay the appt. w/the MS Specialist. Get the testing done as long as the MRIs are done on a strong magnet. My reasoning is that this Dr. may add more to your test list, but will examine you regardless.
My thoughts about the LP are a little different. I know that these labs only perform what is ordered. The labs only keep your blood serum and your CSF for a short time frame. If the new Dr. wants additional tests run on your fluid, they will have had to have taken enough CSF to do this. Did I make sense?
-Shelly
Yes,definetly have the MRI w/contrast and/or the LP.I had the MRI w/contrast and they found I had MS.I just had a LP and waiting the results of that but the MRI is very helpful(atleast it was for me.)I had a CTSAN done 2 months prior and they found nothing,2 months later with the MRI it should TONS of thing wrong with me one being MS.I am not all saying that is what you have because I am not a DR but from my experience MRI's are very helpful.One word of advice,if you have to get a LP done ask for them to do a blood patch then.I had to go back the very next day and get the whole procedure done again from the spinal fluid still leaking.It was not fun at all.So I would ask about that too.Hope this helps and I wish you the very best of luck getting a final diagnosis.Take care.
Sara