Discussions By Condition: Nerve conditions

LYME and MS?

Posted In: Nerve conditions 4 Replies
  • Posted By: leesalow
  • January 13, 2008
  • 03:06 AM

I have Lyme Disease. I live in Mississipp and 2 Western Blots are positive for Lyme. Weeks were spent under care of neuro who suspected MS. MRI's show 3 active lesions on the brain. One on the brainstem (pons). All of my symptoms arrived in this order:stiffness of muscles in back an neck (feel very tight) eye muscle weak, drooping of lid, facial tingling around lips and cheek, fainting spell, toes numb over intervals of 6 months with the last occurence of numbess in my chest and abdomen, encircling my upper half and more prominent when I flex my neck ever so slightly. (This upper body numbness began Nov 13th,07 and in the past week-Jan 6th, 08 has become almost unnoticeable). At times this week Ive had a burning sensation stream thru the same spot on the same foot that has numb toes at times. Gets real hot then subsides.
I have great concerns that my Neurologist who was initially confident that I have what he called the beginning of MS -relapse/remitting and even went so far as to discuss the medication Copaxone with myself and husband while we awaited results of Spinal tap. He said diagnosis of MS is 90% MRI and such lesions, particularly the brain-stem lesion but that the spinal could tell us more. When results arrived there were no 'bands' present in CSF and he completely dismissed his initial believe of MS. - Also, Lyme not present in CSF at time of spinal. He wants to see me for follow ups and sent me on my way to an Infectious Disease doctor because although no lyme was in spinal, 2 blood serum test reveal positives for LYME and also ANA positive. The Infectious disease doctor treats with Doxycycline/amoxicillin as well and says I DO have lyme. Been taking the meds since DEC 5th 07 and am feeling more energy and overall well being increased. I have had long term fatigue that increased in the last 6 months of 07 with lots of joint/body pain. Knees, elbows, shoulders, shoulder blades, neck stiffness, etc which has reduced as well but still flaring up at times.
My concern are obvious:
Multiple lesions on brain--went from 2 to 3 in 5 weeks on MRI"S (in sept/oct 07)- symptoms indicate clinically MS, with positive MRI"S and radiological interpretation indicating possible MS as well on reports dictated. highly unlikely at age 41 I have small vessel disease...so these things that come and go as if going in and out of remission are tale tale signs that indicate I have MS, why would SPINAL tap be used as his definitive decision maker and him go from saying 90% of MS diagnosis is from MRI? Since no bands present: POOF, NO Multiple Sclerosis. Isn't that a bit incorrect in the present day school of thought---Isn't it possible that there were no bands present because it just hasn't gotten to that point where they are showing up? And do they have to present to diagnose? Or would it just make him more comfortable if the bands were present in order for him to make a definitive diagnosis?
Sounds kind of crazy to me. The infectious disease doctor was speechless upon learning of my lesions on brainstem and reading the reports from radiologists. He is the one that mentioned there are many cases where MS patients are positive for lyme and vice versa....but what do we do, remain sitting ducks, waiting for a disease to progress, what will the next lesion bring? How serious is this? Share any information you would like with me. I'm all ears! Thanks.

Reply Flag this Discussion

4 Replies:

  • lyme disease- the great imitator- all your symptoms sound like what happens with lyme and if not aggressivly treat with abx will bring on other - especially the muscle/joint etc. There is a lot of info on such. It is not uncommon to show lesions and then more and then none- and lyme can linger and linger if not treated for quite sometime if symptoms arise- my lyme literate doc has told me there are far too many people being treated for MS that actually have lyme, and they will treat for ms, see lesions dissapate and consider you in remission- and then all sorts of other things occur. Search for a lyme literate doctor in your area- don't dismiss it. I had been wrongfully diagnosed with a multitude of things and all kinds of meds EXCEPT antibiotics and now am in stage 3 neuro lyme, with no prognosis of what will be repairable at this point- i'm sick all the time and have been out of work for a couple of years before my current diagnosis. I'm confident this is indeed what is exactly wrong with me, especially with symptoms worsening as my body has built up a defense against treatment, a cystic t-cell wall that needs to be broken down, and in doing so causes what they call herxing, or a herxheimer reaction (you can read about it by searching)- have I been bit by ticks? yes, tons of times as a kid. Have I ever had a rash, no, and I do not test positive being lyme changes it's form much like syphilis and my body does not produce the antibodies the average doctor looks for. I'm pretty much screwed at any sort of full blown cure being my doc seems to think I have been carrying this around in my for about 25 years, and with the neuro issues who knows how much will be reversible, but I am told I have years of treatment ahead of me, not just a couple of months. I do now have an occassional good day and hope that those will become longer in duration , especially the crippling joint pain. Like I mentioned, it's imperative to find a lyme literate doc for your self regardless. Best wishes for a speedy recovery
    Anonymous 42789 Replies
    • January 16, 2008
    • 00:13 AM
    • 0
    Flag this Response
  • While you are dealing with Lyme,:( you just might want to jack up your vitamin D (2000+ IU/day) or better yet get 1/2 hour a day of sun on your body (not just hands and face). Most of us are low and MS and other autoimmune diseases can get going when you have a deficit. Bear:cool:
    Anonymous 42789 Replies
    • January 18, 2008
    • 02:27 AM
    • 0
    Flag this Response
  • I live in MS also. I have had Lyme disease for ten years. You need to see a Lyme literate doctor. It affects every single part of your body and progressively gets worse without treatment. I see a doc in Louisiana as I found no one here that would help me. The infectious disease doc and all the others here said we don't have Lyme disease down here in the south. Last I checked ticks get on birds and they fly south for the winter. Please doctors use your common sense. This disease has the ability to pass through the blood brain barrier and create a chemical imbalance and cause frightening mental issues. Drugs work to a degree but with the bacteria active in the brain it isn't consistently helpful. Lyme disease isn't curable but it will go into remission. I would get an appointment as quickly as possible. You will be in my prayers.
    Anonymous 1 Replies Flag this Response
  • I just saw the two other posts. I took a lot of antibiotics for a year and thought I was well. I developed bipolar type symptoms and was not aware it was part of Lyme. I started antibiotics again but decided to look into herbal options. Parmaceutical drugs are all derived from one herb or another. I am using teasel root. Read up on it. The herx is bad but I know it's working.
    Anonymous 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.