posted
I have 21 white matter lesions in my brain. In 2006 I had 20, and they thought I had either MS or Lyme. Of course the docs said I tested neg for Lyme so that left MS. I had a follow up MRI this year which showed one more lesion, thus 21. Neurologists felt the pattern of the lesions and my symptoms did not point to MS.
My question is this...if these lesions are Lyme, first, what are they caused by? The spirochetes in my brain causing scar tissue or something else? Secondly, what happens to the lesions with treatment? Do they disappear or stay forever? Since I am experiencing numb patches on my legs and feet, would these be related to the lesions and do they typically resolve or simply not get worse?
Thanks all!
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi Country Mouse,
I don't have any answers, but I too have lesions in my brain... I started w/ 2 and within a month I got another one. That was last March... and I did not want to do any more MRI. The Neurologists/Neuro-surgeons said they were brain tumors and told me I would die in 9 months if I didn't have they removed. I refused.
I too have peripheral neuropathy on my right leg mostly from the knee down. I PRAY that with IV meds I will recover sensation to my leg. As far as the lesions go I don't plan to do any more scans so I won't know if they will resolve or not. Maybe others here have some insights for us both.
posted
I also don't have answers, as I'm still in the process of trying to afford the Lyme test from Igenex, but I also have white matter lesions. My last check I had ten, and mine don't cause numbness, but visual distortion, memory loss, word loss, problems with balance, etc. I am also looking for an answer, I hope you find it, and I certainly hope they are reversible as well. I give it all up to God, because medical science has proven to be nothing useful my entire life but diagnosis after diagnosis. I am taking myelin supplements from a cow's brain, it's the white matter, I read about it in a Reversing Multiple Sclerosis book, not sure if it will do so, but giving it a shot.
Posts: 20 | From USA, NC | Registered: Jul 2011
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
HI guys--
I"m so sorry you're suffering with this...how mentally and physically trying...I don't have white matter lesions but thought I should at least mention that celiac disease as well as severe cobalamin (B12) deficiency can cause white matter lesions....There are a number of articles regarding each in Pubmed.org
Have you checked Dr. Fallon's website at Columbia for any answers re: lyme and white matter lesions?
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Hey Bugg no I haven't checked that out but will, right now. thanks for the tip
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Do you have a link?
I never rechecked my lesions but the other problems you list went away with parasite treatment. Maybe they are up there and cause lesions.
Posts: 1834 | From US | Registered: Oct 2008
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posted
I didn't find the specific info I was looking for, but one of the articles I read last night said that they can sometimes be reversible, but sometimes the damage cannot be repaired. I guess it would depend on the length of time one has the lesions and what specific damage the lesions did in the brain. One article by Fallon did mention that WML are helpful in the sense that they can give a physicality to a patient who otherwise does not have any proof of having Lyme. It gives a patient with neurological symptoms a reason, beyond "psychosomatic", for their complaints. This can be helpful in proving we aren't crazy, in other words!
As for other causes, with Crohns they were always checking my B12 and it was always ok. The doc did tell me that migraines may have caused them. I had migraines with the auras from age 11 until my early 30s. Since I haven't had any in the past 6 years though, that might not hold true given I have a new lesion now. He also said it might be due to smoking (I don't), HBP (I don't have it), or glucose problems (I don't them). Basically he was stumped at the time and they just decided to ignore it. So here I am, probably full of spiro. It's maddening.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
When I found my first one my neuro said "everybody has one, don't worry"... which isn't true at all, like 10 percent of people over 70 have a few, NOT everyone. Then i progressed into 4, my next neuro checked my B12, very low. I got it normalized since then, and now the lesions are even more. Have hypoglycemia (which can cause it), sleep apnea (Which can cause it), and a plethora of other things, but I truly think it's more of an infectious burden, I have well over 3 organs affected; pancreas, brain, pituitary, heart at a minimum.
I've read if they are from sleep apnea they can be reversed, and a few others. I've read some stories on this forum of others that didn't get reversal after a few years. But I have hope for all of us God is masterfully intelligent and this is nothing for Him.
Good luck, friends.
Posts: 20 | From USA, NC | Registered: Jul 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Countrymouse, scorpiogirl and all:
My daughters neuro symptoms had great improvement while on tindamax. We had to take her off of it due to side effects (alerigic reaction and anorexia).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi again:
I also forgot we just saw an allergist immunologist (lyme friendly where our LLMD recommended him) and he indicated many of my daughters neuro symptoms were an immune response to the spirochete bacteria.
Not sure if this means the lesions are created by the LB or our bodies response to them.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
I had lesions on the brain in my MRI several years ago. They never said how many, but said they "could be consistent with MS". However, in 2 separate spinal taps they found no indication of MS, or lyme. My WB is +, my PCR was -.
Basically, depending on which doc you listen to, my lesions were caused by low B-12, or migraines, or MS, or lyme. I have no way of knowing myself what the true cause was, but I believe any or all together could be it. I was put on MS meds due to the lesions even though I had very few of the actual diagnostic symptoms. I think the neuro just didn't know what else to do.
It is very confusing and I was never told whether the lesions can be cured or if they'd ever go away.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
From what I know, lesions indicate structural changes in the brain. So...when the brain gets infection with TBI's, encephalopathy sets in first (brain inflammation), this then typically reduces the blood flow to parts of the brain (hypoperfusion.) This can clearly be seen on a brain SPECT scan.
If the hypoperfusion (low blood flow) continues for a long period of time, the brain's structure can change. (Lesions.)
I had 2 small spots on my original Brain MRI with suggestions of atrophy of my parietal lobes. 8 months after treating lyme with Doxy..my MRI was normal!!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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