I was told 11 years ago that I had "probable MS", then put on Avonex, which I discontinued 2 years ago, due to the side effects, and trying to pursue a Lyme dx.
Two months ago, I had a relapse of whatever it is, and there are a bunch of new lesions on my brain, revealed by MRI. One looks like a Pacman!
Since there has been progression in the demlyinating of my brain, my LLMD, me and my neurologist decided that I should take Copaxone. It is the least likely to interfere with any Lyme meds I need, as it is not an interferon. I do NOT need any more holes in my brain!
I had an Igenex positive for band 31, which I understand is Lyme-specific. We are awaiting the confirmation test results right now. I believe that my LLMD will be putting me on antibiotics regardless of what the test says. Any recommendations on what might work well with Copaxone?
My question - is anyone else in the same boat? I know Lyme can cause the same symptoms as MS (which is just a label for symptoms anyway), so it seems that stopping or slowing the demylination while treating for Lyme would be a good plan.
Am I making sense?
Posted by Snailhead (Member # 18091) on :
You do make sense; I was on Copaxone for a year before my Lyme dx. My Lyme dr said I could continue on my Copaxone if I wished, but he felt it was a misdiagnosis. I am on IV ceftriaxone; dr. told me the Copaxone was fine to stay on during my abx treatment.
I chose to take a break from the Copaxone, and give the abx a shot. Let me know if I can help further.
Posted by DeniseNM (Member # 11182) on :
Thanks, it's great to know I'm not alone!
Posted by soonermom (Member # 14494) on :
I am finding myself in similar situation. I was never diagnosed or treated for MS, but was being watched for it when I tested positive for lyme.
I had been treating (for lyme) since last May, but recently had to stop all abx due to liver enzyme elevation.
I just had a yearly MRI, two months after stopping abx, and it showed new lesions (first time there was a change since 10/07)
I was told by my GP to find a neurologist to read my films...ughhh! I really thought that was all over. I guess I have no faith that anyone can tell me what is causing these lesions for sure!
I know I have read studies on neuro-lyme patients that were treated with rocephin and copaxone together with good results. I will try to find that article and post it.
I have a good friend that went numb from the waist down and they also found lyme antibodies in her spinal fluid. She started out with no lesions, but they just found 4 that are typical of MS. (periventricular and one dawson's finger)
You definitely aren't alone!
Posted by dmc (Member # 5102) on :
I had MS lable since 1988, never did any CRABs MS drugs. Found out Lyme in late 2003, subsequent MRIs show no new lesions, none enhanced since doing abxs.
Been on lots of oral combo protacals. Short course of Rocephen didn't help the MS type symptoms.
Did 4 months Tigecyl June to October '08. That's made the most difference. Haven't had MRI yet this year to see if any changes.
I have heard of those who do Copaxone w/the abxs. All you can do is try it & see for yourself. We are all so different.
Posted by joe-nm (Member # 18054) on :
Denise,
I'm from New Mexico too. I was bit by a tick in Florida and returned home with Lyme and Bartonella.
I had 20-25 areas of demylonation on my MRI. I started with 200mg of doxycycline which didn't work, then had 3.5 months of rocephin IV which helped a lot.
I then started 600mg of rifampin and 400mg of doxycycline which helped the Bartonella. I currently take the rifampin with 1000mg Biaxin and 200mg of plaquenil. I am functioning very well and only have a little trouble with vibrating vision in my eyes.
Send me an email if you want so we could compare doctors in New Mexico. I just recently started going to see Dr. F in Arizona.