testing for MS

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sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 6/26/2009 5:39 PM (GMT -6)   
Lyme and Ms are so similar symptoms,What kind of test are there for MS??THat would definitely rule it out?

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/26/2009 6:36 PM (GMT -6)   
MS is a diagnosis of exclusion. There is no test that rules it out.

:(
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/26/2009 11:09 PM (GMT -6)   
MS is a Clinacal Diagnosis. The criterea for me was Multiple Attacks, Multiple Lesions, and O bands is the spinal fluid and also they had to rule out Lyme. I had met there Criterea and They Diagnosed me with MS. The problem was I tested CDC positive for Lyme 8 times. At least 10 Oregon Drs told me the Lyme tests were wrong. Accept you have MS, one Infectious Disease Dr told me how lucky I was to have Brain Lesions because at least Drs would treat my symptoms and not tell me its all in my head, thanks.
 
I finally flew to Conneticut to see a Nuero he said definitly Lyme hopefully it's not to late. Since they pumped me full of streroids and not antibiotics. I did get better after a couple years. Always stayed on low dose antibiotics. I stopped antibiotcs a couple months ago and it came back with a vengence.
 
So now I am off to Conneticut to get more antibiotics. I am not sure how to define what I have. I know antibiotics made me better but am I going to have to maintain this forever did it turn into MS and will I deal with this forever. I don't know.
 
Let me know what you figure out. It's been 5 years and I am still not sure.
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


veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 6/26/2009 11:16 PM (GMT -6)   
What type of test and where really lyme did u take?
Your saying u had 5 specific bands pos?
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Post Edited (veromia333) : 6/26/2009 11:19:02 PM (GMT-6)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 11:18 PM (GMT -6)   
Really Lyme, i have the brain lesions too, tested positive for IgM, and still cant get a Dr. to treat me for lyme. yesterday i found out i now have neuropathy in both legs. and now i am starting with the nuero issues. they are mild compiared to most here. but its just a matter of time i feel.

I am so glad you are able to go to Ct. i am praying for you :)
   RD
                                                                                                                 
 
still looking for answers
 


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/26/2009 11:18 PM (GMT -6)   
Beth, if you got better don't you think it's Lyme? I've seen MS Specialists and many neurologists and I feel like I'm more educated than some of them on MS! I know symptoms come and go, but did you have clear attacks that allowed you to completely recover in the in-between times? Unless you have a very progressive type of MS, most people in the relapsing-remitting stage get for the most part back to 100% between attacks. If not, and your symptoms were constant and just varied in intensity...I would assume that since the abx helped that it is lyme. Wouldn't you?

What are you leaning more towards?

The ID Dr said you're lucky you had lesions...I think you're lucky you tested CDC + for Lyme!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/27/2009 12:35 AM (GMT -6)   

I am going to try to answer all your questions but brain fog pretty bad just started Flagyl. Yes I believe I have Lyme after 90 days of IV rocoephin and lots of orals 2 years ago all my Lesions were gone about 7 in brain and spine. My MS Dr was shocked. My symptoms have always been so MS typical they do come and go last about 8 weeks, I had 4 bouts of optic nueritus the first year they would last 8 weeks go away and a few weeks later my other eye would go out. I finally started Doxy and have never had full blown optic Nueritus since.

I just worry that for how long it went and how Nuerological it is it may always be a problem.

Onto test results I had to pull out medical notebook I haven't seen it for awhile. I hid it I never wanted to see it again after getting better but here we go agian. I have used 3 different Labs all the same result. Stonybrook, Igenix, and a local Oregon lab. I only had 2 positive IGM bands but that still makes me CDC positive. They eveb called me and stated that I was Lyme Positive in Oregon and they wanted to know my life history.

I have always been IGG Negative band 43kDa present

IGM Positive bands 41, 23

Spinal tap showed

IGG Negative 41 kDa present Lyme

Oligoclnal Bands present
 
In short what LLMD Dr. K said she suffers from Demyelinating disease of the central nervous system. She requires extensive antibiotic treatment for CNS Lyme. And Ideally she should be on Copaxone due to the lack of interference with host's defense mechanism for relapsing remitting MS. Wow I haven't read that in years so even he thinks I have both.
 
I don't get it. I cant wait for my appointment in July to see what he says now that was back in 2006. 
 
My last MRI showed about 7 new lesions old ones still gone. I have one in my spine that is active and is causing my legs to not work right. Since starting antibiotics again all the weird Nuero stuff is coming back. Memory, fatigue, mood problems, MS Hug they call it, all kinds of stuff. The leg problems suck I stumble all over and fall. I never thought it would come back so hard.
 
If none of this makes since ask me agian? it's late.
 
 
 
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


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/27/2009 12:43 AM (GMT -6)   
Beth,

your IgM is the same as mine bend 41 & 23. my IgG was only band 41 tho.

so i may be walking in your shoes soon :)
   RD
                                                                                                                 
 
still looking for answers
 


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/27/2009 5:27 AM (GMT -6)   
My sister was in the same situation. It took them years to figure out what was wrong with her. She has lesions on her spine only. They thought it was Lyme but abx did not help.
 
They finally diagnosed her with MS because of the lesions and her symptoms. She had to quit her job and was very sick.
2 years ago they put her on Copaxone and today she is back to part time work and doing unbelievably well. Much better than I am doing. I think she is lucky to have a diagnosis and treatment. Yes she has to do injections everyday but it has made a huge difference in the quality of her life.
 
For a while I still believed she had Lyme but seeing how she has turned around from what she was like I no longer believe that. She doesn't have the classic symptoms of MS and I think that is why it took the docs so long to figure it out. And she went to the best doctors in Boston...

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/27/2009 12:18 PM (GMT -6)   
lk, yes it is from what i have found on it
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)

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