Lyme or MS... any thoughts?

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jsher
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 12/28/2009 2:49 PM (GMT -6)   

I am 39 am still waiting for my diagnosis. I have a spinal tap is on January 8th. Here is my history:

No issues EVER. about a year and 1/2 ago I starting feeling VERY fatigued with occasional heaviness in my legs. I was given a blood test and told nothing was wrong. the heaviness in my legs and extreme fatigue continued and I ignored it. They tested my thyroid and not much else.

The last week of this past July 2009 I started having mild tingling in my feet. I went back to my doctor who told me to take vitamins.   Two weeks later I developed the bullseye mark of a lyme tick bite. I was immediately told to go on a six week course of antibiotics. Which I completed. The tingling never subsided or went away.

A neurologist was convinced the tingling was not Lyme related but was a nutritional deficiency. Tested my blood for everything under the sun. No deficiences. She did an EMG: no nerve abnornalities. Finally ordered a brain MRI (with contrast) just in November. Four lesions on my brain. Then a cervical spine MRI (with contrast) more lesions. Now I have the spinal tap on Jan. 8.

I still have the tingling in my feet (no numbness), extreme fatigue, some minor blurring in one eye, heaviness in my legs and occasionl tingling in my hands. I am now seeing an MS/Lyme specialist in NYC who insists the Lumbar puncture is necessary to rule out other issues and determine if its MS and not chronic Lyme. It seems everyone is leaning towards MS, but won't tell me so.   

I live in constant fear of what this diagnosis will do to my life...any thoughts about the Lyme/MS issue?


NurseKimK
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/28/2009 5:29 PM (GMT -6)   
I just wanted you to know that you are not alone.
 
I was dx with lyme in the summer of '08. Never had a tick bite or rash. I had a very high fever, headache, and stiff neck...I was so sick I thought I had meningitis. I was put on 10 days of amox and my lyme was neg. Less than a week later I developed bells palsy. I finished my 10 days of abx, went to the NP and she retested my lyme because my bells palsy wasn't any better. That test was positive...another 11 days amox. The bells palsy went away.
 
Fast forward to Sept '09. I have a numbness/tingling in my leg, then my arm, then my other arm, and then my other leg, lessening in intensity as it progressed from one extremity to the next. It lasted a week, returned in Oct, and then a few wks ago.  I was convinced it was MS and I even have an MRI of my brain and spine tomorrow and an appt with a neurologist next week. I did a little research and realized that it could be lyme. I feel I wasn't treated appropriately for the lyme and I am worried of being misdiagnosed with MS.
 
My brain is in a fog and reading about MS and lyme doesn't make it any easier.
 
Luckily I live in the Boston, MA area and if it's MS I have one of the best centers for MS nearby...if it's MS
 
I hope you get diagnosed so you can start treatment and get feeling better asap.
 
 

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/28/2009 6:13 PM (GMT -6)   
jsher - I share all of the symptoms in your post. I tested positive for Lyme and coinfections; have never been tested for MS since once I had a Lyme diagnosis it didn't seem necessary to look further. Have you been tested for Lyme? It is difficult to get an accurate result. In 2005 an elisa Lyme test was negative for me, though based on my symptoms, I had it then. It wasn't until this past Fall that I got the Western Blot processed by IgenX lab and interpreted by a Lyme Literate MD and was diagnosed properly. Follow-up tests revealed the coinfections. I don't know anything about testing and MS, but hope you will thoroughly explore the possibility of Lyme, especially since you got a rash and were previously treated. I wish you luck getting a diagnosis.

Rose
I have Lyme; it doesn't have me.


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/28/2009 9:22 PM (GMT -6)   
jsher,
The bulls eye rash is a definite sign of Lyme disease. The testing for Lyme disease is very inaccurate, some feel 40% or more actual Lyme cases are missed due to these inaccuracies. Because of this and the fact you developed a bulls eyed rash, I feel the likelihood of you having lyme is high. I would suggest to go to ilads.org and read their treatment guidelines. Also you could ask for a doctor referral here. The best chance you have to eradicate this disease is to see a doctor that specializes in Lyme disease.

Best wishes to you

NurseKimK,
Sorry to here you are having a difficult time finding a diagnosis. Every symptom you have are common Lyme symptoms. Many MS, and Lyme symptoms overlap. However MS will be diagnosed much more than Lyme disease even though both are supposed to be clinical diagnosis. I hope that you would exhaust all avenues with both these diseases, and hopefully come to the proper diagnosis. Please go to ilads.org and learn as much as possible about this disease.

Best wishes to you

Post Edited (Cheezhead) : 12/29/2009 7:58:56 AM (GMT-7)


jsher
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 12/29/2009 7:44 AM (GMT -6)   
I want to thank everyone for their kind words. I have taken all the advise and will stay on top of my doctors about the Lyme. My nuero says that since I tested postive for Lyme in 2009 and was retested only a month ago and still showed the same Lyme positive bands he will send my spinal fluid after my tap to a lab that specializes in Lyme in order to try and accurately determine if this is either Lyme and/or MS. It is clear that I have had Lyme...the question that remains is whether I have MS as well....

Thank you for the advise!!

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 12/30/2009 3:38 PM (GMT -6)   
Good Luck it is all so confusing. I started with a MS Diagnosis very typical symptoms. Had an MRI lesions in my brain and spine. They tested me for lyme it took them about 4 months to admit to me they had done 2 tests and both were CDC Positive but they felt they were wrong.
 
They did a spinal tap came back posive for O bands and negative for lyme. I can not find a Dr in Oregon that will believe it could be lyme. I travel to Conneticut and got IV Rocephen for 90 days. Next MRI clear of all lesions my Nuero was shocked but still would not talk about Lyme or Antibiotics.
 
 Went sympton free for 3 years had a healthy baby stayed on oral antibiotics this whole time. Stopped taking them when i was done breastfeeding thought I was all better and poof I lost feeling in both legs all the way op my torso. New MRI 13 new lesions in different spots and worse syptoms than before.
 
Nuero wouldn't consider starting antibiotics again so back to Conneticut. All I got was oral antibiotics this time and hoping there enough all symptoms have stopped, besides faigue and my legs don't work %100 percent but I was able to put away my cane.
 
I really hope Drs around here start accepting Chronic Lyme soon. I believe antibiotics keep all my symptoms away. The approved MS drugs have not helped me. but i am sick af every Dr I see thinking I am nuts for believing i have lyme. I have 8 CDC Positive Lyme tests after 5 years and still they don't believe me. Crazy World we live in!
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 12/31/2009 11:56 AM (GMT -6)   
 
Hi jsher,
 
I am sorry you are having to deal with all of these medical issues.  I think it is possible to have both lyme and MS, or either one alone.  It sounds like you already know and have proof that you have lyme.  I am glad you will seek treatment.  Please check out these television news report stories about a new discovery about MS.  Maybe it will be of help to you.  Watch all the segments to get all the info.  I hope you are able to get proper treatment for all your symptoms and that your return to health is swift.
Best wishes to you,   bablymers mom

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 12/31/2009 12:28 PM (GMT -6)   
Jsher,  I just wanted to add that from what I can remember reading spinal taps are only about 25% accurate for picking up Lyme disease, so again you cannot rule it out using the results of a spinal tap.  FYI I don't think Neuros like to even consider Lyme, they are more comfortable diagnosing MS.  The Neuro that I first saw wouldn't even test me for Lyme because I never remembered having a bull's eye rash ( I had plenty of possible exposure though).  I had/have all of the symptoms that you describe except that my MRI didn't show any lesions.  Read all you can and educate yourself about Lyme because the doctors don't have a clue, and some are even hostile if you mention the word Lyme.  Good Luck, and let us know what happens.  KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


jsher
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 1/6/2010 8:29 AM (GMT -6)   
I can't begin to thank you all for your posts! Each one was helpful in its own way. My LP is tomorrow and hopefully I have some answers and the doctors can take some course of treatment to help me...no matter what it is!

I wish you all the best in your journies too!
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