posted
I had a tremor in my thumb that showed up again after two years.
My muscles continue twitching and I continue to get even weaker.
My neurologist thinks I may have MS instead of lyme and we've just done another MRI to see if he can see evidence of that.
It seems that after two years, more progress should have been made.
Are there specific antibiotics that a geared for the different manifestations of the lyme?
My trigeminal neuralgia and atypical face pain just continues to plague me too, and I am going to another dentist yet again to see if there is any reason at all to get root canal done.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
In general, that would be Iv Rocephin if your neurologist thinks you have MS.
Biaxin helped my twitches!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Have you tried IV antibiotics yet? I know many with neuro lyme have had success with IV rocephin, for instance. My LLMD combines that with IV zith and pulsing flagyl. Some prefer IV clarforan because it doesn't cause the gallbladder sludging.
Tremors, twitching & weakness are common to so many with lyme...it doesn't mean you definitely have MS. Spect scans and MRIs can be abnormal in lyme as well...lesions can be seen. MS is often the misdiagnosis given to those of us who have long standing infection/co-infections.
I know two years feels like a long time...but if you've been simmering untreated/undertreated infection for awhile, it may take some time to see improvement. Sometimes, it just takes finding the right antibiotics at the right dosages.
Do you have a good LLMD who's willing to explore all the different options with you? Unlike typical neuros, they will go after the cause of your symptoms...not just slap a label on you.
Hang in there. I hope you get some good answers soon! Posts: 136 | From North Carolina | Registered: Apr 2007
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To be honest, with all the controversy and the stigma associated with having lyme, I'd almost rather someone tell me it's MS. This is just plain too hard anymore!
I mean, it would seem after this much time, symptoms should stay away once having gone away and so it makes me question everything about the treatment.
I do have a great LLMD who is determined for me to get the babesia fully out before much of anything else.
She would do IV and wanted me to do 3 months of it, but I think I am unable to take rocephin, and am definitely allergic to sulfa.
Anyway, I was wondering about Minocycline?????
Thanks for the feedback! Trying to not be discouraged. The truth is, I have made improvements, just that I was REALLY in the torture chamber, so improvements are relative.
And I never know how much the other camp may be right in assessing the autoimmune component. Especilly given the lack of documented research and overall consistency in results.
posted
Hi PT, just sharing my experience in hopes that it helps you.
I've had 3 IGenex Lyme tests which have grown increasingly positive, but which are not fully CDC positive yet. I've been treating with 400 mgs doxy since Feb '07.
Most of my symptoms were neuro in nature, including tremors, shakes, jerks, vibrations, burning, stabbing, all the cognitive, balance, eyesight & perception problems.
With an 'equivocal' Lyme result, and that spectrum of symptoms, MS has always been a possible diagnosis for me. So, I got brain MRIs with contrast, LPs, etc., and consulted one of the top MS specialists in the world at the MS Institute in Manhattan. I have 2 significant brain lesions and about 8 smaller, could-be-something-could-be-nothing lesions.
Dr. Saud Sadiq, the MS specialist, has focused on that spectrum disorder for over 25 years, and has seen thousands and thousands of patients. He has handicapped my chances of having MS, with the profile above presented, at about 1%. He could not rule it out, and he did say he had 3 - 4 patients in his practice currently whose profile I would match: however, he felt the chances were very, very remote that it would turn out to be MS for me. Given his reputation and experience, and the positive opinion I formed of him during these investigations, this is a very meaningful statement to me. He will be monitoring me & my lesions annually, and will follow my progress carefully as a back-up to my LLMD. This will be an open question for me for awhile.
Since treating with abx, my neuro symptoms have improved dramatically. No, I cannot say that they are 'gone' or that I am 'cured'. I wonder all of the time if I'm going down the right path and if I will ever get completely well. I, too, wish I had more obvious, sustained progress, and could be completely confident of the course I've chosen.
But I was bedridden before abx treatment, and also - sorry for this characterization - 'sick unto death'. Even though my neuro symptoms can return, & are mostly reduced rather than gone, I now have a strong feeling of constitutional (physical) improvement and wellness. I don't think you'd feel sick, then well, with MS.
I don't know if any of this resonates with you or helps you as you work through this. We are just on a very difficult journey, and it is hard to stay mentally tough. If nothing else, just know we understand and that you are not alone.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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Thanks so much for sharing this. Honestly, my neurologist may be grasping and simply being sure, really. He is sympathetic to lyme, but we all know, most are not real sure about what to do with it.
I do have all the MS symptoms, but also others.
My neuro's nurse said that MS can cause sweats and chills when in a flare of trigeminal face pain/headache torture. So, it could be MS or it could be babesia with something else, I don't know. I do know I can't tolerate that babesia treatment anymore!
At my worst, my brain felt like it was splitting apart among other things and I had trememdous amounts of memory and emotional problems. The emotional things seem to be improving but physically, I seem to be deteriorating and my memory, although I recognize myself in the mirror and also people I know, is still a problem.
That's why after all this time, I feel as if I ought to have made more improvement than I have.
Anyway, thanks for sharing, it does resonate with me. The truth is we are in a very difficult situation. It's hard for me to trust my LLMD even though I know she is very good. With all the controversy it is hard for me to trust any of it!
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