Discussions By Condition: Chest conditions


Posted In: Chest conditions 1 Replies
  • Posted By: leesalow
  • January 13, 2008
  • 02:56 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.

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  • I was between Lyme and MS last year, but had only one lesion so two neurologists called me "pre-MS wait for the second lesion." I thought it was Lyme because I was bitten annually for 12 years in Douglas County, Kansas. All doctors I saw last year said we do not have Lyme here.If Mississippi is like Kansas, the health department has failed to do their job to notify citizens where Lyme does occur in the state. http://www.cdc.gov/mmwr/PDF/ss/ss4903.pdf shows US cases reported to the CDC from 1982-1998. It looks as if confirmed Lyme cases have been reported in a lot of Mississippi counties. Contact your local county health department (expect to be dealing with people who haven't thought about whether or not your area is endemic for Lyme or not and haven't told anybody if they even know it) and bug them until you can determine how many cases of Lyme disease they have reported as confirmed to the CDC since the mid 1980's. If it is at least 2, your area is endemic for Lyme disease, meaning you have Lyme ticks that are infected. That gives you a probability to have Lyme.Since 2002 the states were also participating in a study of probable and suspected Lyme cases, so get those numbers too, which are required CDC reporting beginning in 2008. For instance, although Douglas County did not have any confirmed cases after 2002 when they had 4, from 2002-2006 Douglas had 47 Lyme cases that were probable or suspected. That's a telling number. What are the confirmed cases and the probable and suspected cases for your county? I got to a Lyme doctor and am responding to antibiotics, but I researched myself that the eastern 1/3 of Kansas is endemic to be sure I was dealing with the right disease. Mayo tested me for 6 days and eliminated everything else as well. It took 400 mg of doxy to improve at this level, and a Z pack raised my drooping eyelid. Ceftin cleared my blurred vision. I believe an assortment of short term oral antibiotics has helped picked off several symptoms. Deep body massage and saunas (in Mississippi in the summer?) have also helped. Fight on.
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