lyme disease or MS

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lyme disease or MS

Postby pinda15 » Sun Mar 13, 2011 10:20 pm

Have been dealing with MS like symptoms for over 9 years with possible MS and Centreal Nervous System Disorder dx. Saw a new Neurologist last Dec. who ordered all kinds of blood work and tests which I finished end of Feb. RBC flagged, B12 deficient so taking pill for, sugar and lipids up and need to watch, healthy heart, bone scan good, eeg's normal, evoke potentials normal, MRI shows changes and pineal gland cyst larger ?, positive lyme test and second positive with third to be done with appointment to Infectious Disease Specialist. Could this be lyme disease all this time. Been reading about and could be but ............................... just like MS dx. Neurologist only saw me first visit, ordered tests and sent info to my family Dr. suggesting I should see a rhumatologist, which I saw 2 years ago, or Infectious Disease Specialist. No reasons for and no info re MRI changes or lyme test. My family Dr. sent me for the second test for lyme and she is looking up info on lyme disease and booking Infectious Disease Specialist. Who knows when I will get that. Any one else go through this? Any thoughts of where I should go? Linda
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Postby jenf » Tue Mar 15, 2011 6:39 am

Hi Linda,
I too was diagnosed with MS in 2009. Was treated with IV Solu-medrol in the hospital and got SIGNIFICANTLY worse afterward. Neurologist after Neurologist diagnosed me with MS. I had this nagging suspicion they were missing something. I could "feel" something in my body... hard to describe, but it was a nagging suspicion I couldn't shake. After a failed attempt down the CCSVI road, I decided to reexamine my "diagnosis". I went to the National Institutes of Health, who also confirmed the MS diagnosis. I started the CRAB's, even though I still wasn't convinced. The MS diagnosis had too many holes in it.

Last year, my older sister started having neurological problems and found out she had Lyme disease. I went to an Infectious Disease doc who advised me that Lyme and MS are almost indistinguishable. She started me on a course of Doxycycline, and I had the typical reaction for someone with Lyme disease (an increase in symptoms). This only lasted for a few weeks, and I've been getting better ever since. I got a second opinion from an Integrative doc who also confirmed the Lyme diagnosis. So even though I fit the criteria for MS by the accepted medical standards, I in fact, had an untreated case of Lyme. Keep in mind I had tested negative for Lyme 7 times before I began treatment. An educated Infectious disease doc will treat based on clinical symptoms, not just the lab tests (which aren't worth even the copay people spend on them).

There's a huge debate among many as the validity of the current tests and their accuracy. A great article on MSNBC came out the other day on this epidemic. you can access it here: http://www.msnbc.msn.com/id/41973641/ns ... _diseases/ . I guess everyone has to make their own decision with regard to treatment. there's also a group of MS'ers on here that treat successfully with an antibiotic protocol. You can find it under the "Antibiotics" forum. If you need any other info, feel free to PM me.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby pinda15 » Tue Mar 15, 2011 3:17 pm

thank you for your reply Jen. I'm waiting to hear when my apt. with the Infectious Disease Specialist will be and looking for any information about lyme disease and what tests are used here in B.C. Canada. Two tests show positive and the lab wants another in four weeks. Thanks for the web page info. I do not remember being bitten, could have been in Australia, New Zealand or B.C. Was very ill in Aus. so maybe that was the start. Hope to find a Dr. who will investigate everything and I can find out what this is. Do have many white matter lesions on MRI and if the last one done in Feb. is correct the cyst or whatever showing on or by my pineal gland, has grown from 1cm on MRI 2004 - 2009 and now showing as 5cm. My family Dr. is talking to the specialist who read the last MRI and asking him to check past MRI's for this and other changes. Hope to hear soon about this and next apt. Neurologist who did the last MRI and lots of other tests, suggested Infectious Disease, Rheumatologist, and General Internist Specialist's. Looks like my family Dr. is starting with Infectious Disease because of second positive test for Lyme and lab request for another test. Thanks again, Linda
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Postby jenf » Tue Mar 15, 2011 3:40 pm

Hi Linda,
Here's some other resources for you to look at with regard to the Lyme/MS connection: http://www.owndoc.com/pdf/tom-grier-ms-and-lyme.pdf
http://www.canlyme.com/lymemultiplesclerosis.html
http://www.owndoc.com/lyme/multiple-scl ... -cover-up/
And some info for referrals:
http://www.chroniclymedisease.com/llmd-referrals
http://www.lymediseaseassociation.org/i ... Itemid=368
Navigating through the Lyme/MS maze can be confusing. If there's anything else you need let me know and I'll try and assist. Hope these sites help!
Jen
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 2:00 pm
Location: Albany, NY

Postby Taurus » Tue Mar 15, 2011 8:47 pm

Any difference between MRI lesions from Lyme or MS. I got tested once for lyme due to a rash and severe itching in right arm. It came out to be negative. I have heard that brain lesions in Lyme and MS do have some differences . Any comments please.
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Postby jenf » Wed Mar 16, 2011 7:55 am

Hi Taurus,
I found some info on the web about the lesions. It appears as though they are almost identical:

http://lookingatlyme.blogspot.com/2010/ ... atter.html

http://www.naturalchoice.net/articles/c ... nosis.html
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 2:00 pm
Location: Albany, NY

Postby pinda15 » Wed Mar 16, 2011 4:42 pm

Thanks for the info but after reading some I'm blown away :( I live in B.C. Canada so the Dr list would not work for me. Will look for a list here. Think my family Dr. is booking an apt. with Infectious Disease Specialist. Suppose to have another lyme test in a week but not sure if Dr. is waiting until I see the Specialist. Do not have the paper work to do. From the reading it looks like the test needs to be the right one and do I need? My Dr. did not think lyme was the problem but does not know much about it. She is reading up on so hope that helps her to help me. Will have to read somemore when I'm able to absorb and make some decisions on how to proceed. Thanks again, even though it has muddied the water more, Linda
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