I am reading "Cure Unknown" and on pages 283-284 it is talking about how the antibodies to OspA (of borrelia) can also attack the myelin that surrounds nerves in the CNS and the periphery.
It is called molecular mimicry because they think the two "sites" must look similar to the antibody and the antibody mistakes the myelin for the bacteria.
When I go to see which band on the WB is representative of OspA it is 31, and my response was 4+....and I have about 13 brain lesions.
I also had 1 O-band in my CSF, which was probably the same antibody.
This is just really disturbing to me as it is my greatest fear that this will one day turn into something like MS.
Do any of you with brain lesions (or mostly neurological symptoms) also have a high response to band 31?
They should be seeking out some of us for studies or something. Hopefully all that we are going through just won't keep being repeated year after year with no end in sight.
[ 15. August 2008, 08:28 PM: Message edited by: soonermom ]
Posted by Lymetoo (Member # 743) on :
I don't know if you SHOULD be scared or not, but that would scare ME!
Would like to hear from those with lesions.
Maybe you should change the title of your post so people with lesions will see this.
Not everyone opens every link. I don't!! Posted by Tincup (Member # 5829) on :
Hey sooner...
It does sound wicked, doesn't it?
Use to be.. in the good old days... when I felt rotten.. I felt rotten.
But when I went to get tests done that showed or confirmed that I did actually feel rotten...
Not only did I feel rotten... it was scary too.
And that made me feel even more rottener.
Yes.. rottener is a word, don't ya know.... I just made it up.
My point being.. and many of us do it.. is...
Don't let the tests add stress to your day. Wish I had a nickel for everytime I made THAT mistake. Problem is... what will be, will be. Stress added to the mixture is just that. Stress added to the mixture. NOT helpful and it doesn't change the outcome.
So please don't stress over it. I want to see you as good as can be.. and hopefully stress free.
That said...
I had a high 31 also. And I had brain lesions too.
After some heavy duty treatment I was retested.. another MRI of the brain.. and the lesions had gone away.
I then had another MRI years later.... and the lesions were still gone.
Moral of the story.... ??
I guess it would be that the lesions can go away with treatment... and you can feel better too.
I sure hope they do.. and you do!
Oops!
NOT you go away. The LESIONS go away... and YOU feel better too.
Posted by soonermom (Member # 14494) on :
I know, I know....
All I can do is get treatment, which is what I am doing. It didn't take me TOO long from the time my symptoms were noticeable until I was diagnosed (7-8 months).
I spent a lot of those months thinking that I did have MS, and when I learned it was lyme I was so relieved.....so now I read about this and I just can't believe how a bacteria can completely alter someone's life like this.
If my neurologist doesn't fire me for believing that I have lyme, I will get another MRI also. I have had 3 since 10/07 and I thought the last one looked "better" after taking abx for a month or so.
It is encouraging to know that your brain has healed. I have never completely gotten rid of the numbness or headaches, so I probably have a ways to go. I was only officially diagnosed in May 08.
Posted by Dawnee (Member # 15089) on :
Well goodness I hope not. I have high 31 also...and I have had lyme for two decades undiagnosed. I only have one small lesion on my brain that I am told about anyways..and the radiologist even says it's nothing.. "likely representing a venous angioma" pfft.. Whatever.
But anyways...I have the high 31 and only the 1 small lesion. But I was suspected to have MS at first because that is what my symptoms pointed to.
I agree... stressing over it will do NO good. And I don't think that everyone with high 31 will develop MS anyways.
Dawnee
Posted by soonermom (Member # 14494) on :
Dawnee,
Do you have a lot of neurological symptoms? Just curious, the scientists said it could affect peripheral nerves as well.
I am wondering if there is any link between a high #31 response and people w/more neuro symptoms....or not?? I guess that is my question here.
They truly believe this is like an autoimmune response because they are treating some of these people with IVIG (Intravenous Immunoglobulin).
This is what I am worried about, the lyme disease initiating an autoimmune disease. Do I think that everyone with a high #31 response will get MS, No, not at all....but in my individual case it is concerning to me w/13 lesions and 1 O-band.
Hopefully with treatment, my lesions will also disappear. That is what I can hope for.
Posted by Dawnee (Member # 15089) on :
Almost all of my symptoms are neurological/CNS I have heart palps, muscle twitches body wide, cognitive issues, memory issues, electric shocks and buzzing,short attention span, vibrating..even Lhermittes sign ... gosh I can't even name them all.
The electric shocks and hyper reflexia is what had a doctor send me for full spinal MRIs, and my hearing issues/brain blinking had another specialist send me for the Brain MRI.
All supposedly normal except for one "small curvilinear area of enhancement in the left frontal convexity likely representing a venous angioma".
I was diagnosed with Lyme 2 months later. And my neuro symptoms didn't get so bad that I sought treatment until a traumatic surgery and then traumatic tooth extraction.
Most of my bad symptoms, only showed up within the last 6 months.
Posted by feelfit (Member # 12770) on :
Soonermom,
31+++ here, along w/ 8 other Bb specific bands IgM. Undiagnosed 15-18 years. I have been treating for 9 months now.
MRI and Spect show normal blood flow and symmetry (equal sides). My MRA however showed very abnormal cerebral blood vessels.
When I first had sx all those years ago, I was affected in my joints as well as my brain. Now I only have neuro symptoms.
They are Headache, head pressure, tingling tight face, bugs biting my legs, and lots of anxiety and depression. 9 mo's tx and no let up. Everyday symptomatic.
So, no brain lesions for me, but odd vessels and if it was not for my head and neck, I would feelpretty darn good.
Is 31 neuro? I would bet so.
Feelfit
Posted by Hot socks (Member # 14557) on :
I also have lessons on both sides of the brain. right side is the worst. they thought it could be ms at the time. no positive for lymes. but plenty of protien in spinal fluid to say I have a bone and brain disease.
Do you know how broad of an answer that is? That can be anything from mad cows disease to west niles.
lots of neoroligical problems also, to hard to think of them. It is good to know that one day I could remember what someone said to me from hour to hour.
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