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Old 03-03-2010, 08:48 AM   #1
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I had testing for Lyme's disease...

I had testing for Lyme's disease, Western Blot was negative. All of the antibodies were absent except IgG P 41 Ab, which was present. The results said something about this Ab being related to MS. Can anyone enlighten me about what this may mean? I had a brin MRI, but the results aren't back yet.
Thanks,
rockngerb

 
Old 03-03-2010, 01:40 PM   #2
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Re: I had testing for Lyme's disease...

hi. Just an FYI, in general, almost all Western Blots are negative for Lymes, totally unreliable way of testing for Lymes....there is one lab, called Igenex, which has a extremely good reputation for getting results right... You can find more info on this on the Lymes Boards here on Healthboards.

the info you provided about your blood work in relation to MS, means nothing - your body may or may not be producing these antibodies. In order to diagnose MS, blood work will rule out OTHER things, but will not tell you if you have MS. The MRI, hopefully done with and without contrast, and hopefully done by scanning both the brain and the Cspine, is the first test to definatively look for MS....

MS is extremely hard to diagnos- and can take a very long time to figure out. The MRI is the first test....from there, EMGs, sometimes LPs and usually visual tests are performed...but wait until you get your MRI results and see what happens....did a Neurologist order them? You want to make sure that the doc you see to dx or rule out MS has plenty of MS experience....you want to make sure the doc you see to rule out or dx Lymes, is Lymes literate.

Keep us posted!
Nikki
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Old 03-04-2010, 06:16 AM   #3
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Re: I had testing for Lyme's disease...

Hi MSNik,
Thank you for the information. It was most helpful. I have not gotten the brain MRI results back yet. I am assuming that they are fine. I had another episode of nausea, vomiting, weakness, profuse diaphoresis, tingling tongue (right side), felt like all of my nerves/cells were popping from my lower chest to lower abdomen and fall( after vomiting), banged my head, bruised my arm, back, etc, two weekends ago. That is why they are doing all of these studies. I also have MG. I always get very weak and diaphoretic when I vomit. Someone needs to hold me up, but my husband was in the ER at the time. I have never had the tingling tongue, fall or the popping issue before. I think of all of my symptoms (there are more), MS is a possibility. I'm not going to worry about it. If things get worse, I'll talk to my MG neurologist when I see her.
Thank you again for all your help.

 
Old 03-04-2010, 01:59 PM   #4
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Re: I had testing for Lyme's disease...

Youre more then welcome! Good luck and let us know how things turn out!
Nikki
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Old 03-04-2010, 02:37 PM   #5
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Re: I had testing for Lyme's disease...

Interesting....because I have CFIDS (beginning to wonder if MS instead?), but in 2006 (which was in the year I 1st became sick), I had an MRI (not sure if contrast or not) which was negative for white spots, and also a "Lyme test" although I do not know which one...Probably just the std test though and it was negative according to my GP. Should I get another Lyme test since my symptoms have worsened and the neuro stuff comes more often than before? I am 99% sure to classify my "condition" CFIDS is what I have, but my GP only ruled out about half of the elemination conditions before giving me that diagnosis and I had to tell him most of the tests I wanted done and told him I suspected CFIDS (after 3.5yrs of searching for an answer) and so I basically diagnosed myself.

 
Old 03-04-2010, 03:12 PM   #6
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Re: I had testing for Lyme's disease...

Hi. I dont thnk you did yourself any good suggeting Chronic Fatigue. Chronic Fatigue over the years has become a syndrome which, when all else fails- explans alot of symtoms......a disease such as Lymes or MS, has a more definative onset and symtoms- and can be controlled with the right treatment.

You wrote "but my GP only ruled out about half of the elemination conditions before giving me that diagnosis and I had to tell him most of the tests I wanted done and told him I suspected CFIDS (after 3.5yrs of searching for an answer) and so I basically diagnosed myself." - Thats kind of scary....maybe you need to consult with a Neurologist, not a GP? Maybe you should also explore a LLMD (a lyme literate doctor) and seek further eval on that? You can probably find allot more info on the Lyme Board here on healthboards; and you can certainly ask all the questions you want about MS here with us! Have you ever had any MS related testing? MRIs? things like that?

N
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Old 03-04-2010, 09:41 PM   #7
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Re: I had testing for Lyme's disease...

Quote:
Originally Posted by MSNik View Post
Hi. I dont thnk you did yourself any good suggeting Chronic Fatigue. Chronic Fatigue over the years has become a syndrome which, when all else fails- explans alot of symtoms......a disease such as Lymes or MS, has a more definative onset and symtoms- and can be controlled with the right treatment.

You wrote "but my GP only ruled out about half of the elemination conditions before giving me that diagnosis and I had to tell him most of the tests I wanted done and told him I suspected CFIDS (after 3.5yrs of searching for an answer) and so I basically diagnosed myself." - Thats kind of scary....maybe you need to consult with a Neurologist, not a GP? Maybe you should also explore a LLMD (a lyme literate doctor) and seek further eval on that? You can probably find allot more info on the Lyme Board here on healthboards; and you can certainly ask all the questions you want about MS here with us! Have you ever had any MS related testing? MRIs? things like that?

N
Yes I had an MRI in 2006 (as mentioned before)...I also did see a nerologist in 2006 and he said I was sharp as an Eagle, but he was 75yrs old and on his way out...he did a bunch of in-office tests and tuning forks, made me walk a line, etc. But my symptoms come & go. I recall having to try to pass some of his tests, but as far as he was concerned I was okay for nero stuff. I had double vision the day before my 1st visit to ER and onset of CFIDS-related stuff (that has ben constant for 4yrs now). He said double vision was a concern, but again, he cleared me and said that I needed to see a heart doctor instead...did that, got diag'd with vasovagal syncope...failed the tilt table test. I have read this is common in MS & CFIDS. I do not want to have MS...but there is no regular doctors in my daily life that know anything about CFIDS and I have had to battle this on my own a lot. I had trouble walking and me feet were heavy and had to concentrate to walk and had weak knees the other day...I have also had a lot of digestive issues and headaches and pain in the back of my head/neck...then today I was much better...it comes & goes, but the bran fog and anxiety never leave completely.

 
Old 03-05-2010, 02:40 AM   #8
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Re: I had testing for Lyme's disease...

although you might have Chronic Fatigue- its not a likely dx...you said you havent seen a Neuro in almost 5 years? Time to see a Neuro for these symtoms..
MRIs can change from week to week- the tests should be repeated every 6 months. Your symtoms might mimic one of 100 things- but Id definately start with a Neurologist. If you are concerned about "where this is all going to take you" in the future, now is the time to investigate further.
Wishing you well....
N
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Old 03-05-2010, 07:18 AM   #9
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Re: I had testing for Lyme's disease...

Quote:
Originally Posted by MSNik View Post
although you might have Chronic Fatigue- its not a likely dx...you said you havent seen a Neuro in almost 5 years? Time to see a Neuro for these symtoms..
MRIs can change from week to week- the tests should be repeated every 6 months. Your symtoms might mimic one of 100 things- but Id definately start with a Neurologist. If you are concerned about "where this is all going to take you" in the future, now is the time to investigate further.
Wishing you well....
N
Okay well thx for the advice...I have an appt with an electrophysiologist for my heart rhythm issues next week....one thing at a time, but after I see where he takes me, I am gonna ask him to recommend a good neurologist.

thx

 
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