posted
Many people with neurological lyme have brain lesions that are just like those found in Multiple Sclerosis, which is why so many Lyme patients are diagnosed with MS. Just think about it, if you had this MRI ordered by a regular neurologist, and you knew nothing about Lyme, you might very well have gotten an incorrect diagnosis of MS like so many thousands of others. Then you would have been given worthless CRAB drugs that would allow Lyme to ravage you further until you eventually succumbed to it.
Instead, you and your doctor understand that your lesions are caused by a pathogen that can be killed with antibiotics. That is a very hopeful place to be, especially considering that the lesions often heal over time with effective therapy. My LLMD feels that a large percentage or even a majority of MS cases are actually Lyme, which is really sad to think about.
Think about those poor souls with MS who are told they have lesions and there is basically no hope, nothing they can do except wait for it to inevitably grow worse until they lose the ability to walk or function. THAT is a bad place to be, and the comparison should help you feel a little more fortunate.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Barbarame, thanks, I am sorry you have them too. I have a horrible time on the tetracycline's, may have to go back to Bicillin if my insurance won't cover IV.
FunkOdyssey - I was ordered (during my search for what was wrong w/me) by a neurologist to get an MRI, I chose not to and threw the order away.
It blows my mind, because had I had that MRI then (when I knew NOTHING about Lyme) I would have been diagnosed w/MS and by now be in real trouble.
Unfortunately, I know several people who were misdiagnosed with MS for YEARS and later found out it was Lyme. Their struggle is very hard after years of IV corticosteroids...can you imagine?
My LLMD was sure the test wouldn't show anything.. I find that unbelievable, I have told him for 2 years, I HAVE NERVE PAIN, I am not sure what part of that he didn't understand.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Beautifully said FunkOdyssey. It is a hopeful place to be in. Lymebytes, I hope they go away with treatment. I am in the same boat too.
Posts: 2557 | From home | Registered: Aug 2006
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Hoosiers51
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Member # 15759
posted
Sorry to hear about this new news.
I think crying about it is a natural reaction. I know whenever I get some sort of new startling news about my health, I cry too, just because it is shocking and you never expect you will be one of those people that have something.
I also have the lesions. Honestly, IVs may be a good way to go, but my doctor hasn't really suggested them for me, because I think he believes orals can be just as effective if used properly. Thus, I don't think that just because you have lesions it means you need IVs.
I hope that is comforting to you. Once again, I understand how hard it is to hear things like that.
I think you will be just fine with proper treatment. We are all here to support you!
Posts: 4590 | From Midwest | Registered: Jun 2008
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ByronSBell 2007
Unregistered
posted
Brain lessions can go away with proper IV treatment
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hoosiers51 Thank you for comforting words...it helps.
I said one day not long ago, "I have so much nerve pain, I wouldn't be surprised if I had lesions" WRONG....I was floored.
I think what confuses me most about this...and no matter how much I have studied, does MS exist or not? Or is it Lyme?
I had a small lesion on my spine and two on my spine. The neurologist had started out telling me she was testing for MS, lupas and Lyme so I had done extensive research on all three. That's when I found this web site.
So, I was prepared for the MS diagnosis...however, she wasn't prepared for me questioning her. Needless to say, I did what is often suggested by the folks here...I didn't walk, I ran to a LLMD.
I have horrible muscle weakness on my left side, numbness in lower half of body, muscle wasting in upper left side of body and a host of neuro symptoms.
My LLMD said I need IV but because I am CDC negative, insurance won't cover and I can't afford it. Orals seem to be working though. IV is probably faster.
Good Luck Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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posted
Sorry, one on my brain and 2 on my spine. The effects are noticeable when posting.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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Angelica
Unregistered
posted
Lymebytes I am sorry to hear this. I am sending you positive thoughts for healing any brain lesions.
Try not to let the MRI results upset you because that will not help. I know easier said then done.
Know many of us here are sending you good healing thoughts for better health.
I also think MS is lyme even though I am no expert on the subject. I did know someone with a MS diagnosis with such bad vertigo her husband had to carry her in to use the bathroom. I suggested she attend some healing classes and after a year of classes she was symptom free.
She said when she returned to her doctors they said it must have been a misdiagnosis.
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Hoosiers51
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posted
Some people will disagree, but I do believe MS exists. It is more complicated than just "lesions on the brain."
However, don't let doctors make you think you have MS when you really don't! Unfortunately, the outlook for MS isn't very good, but for Lymies, at least there are more treatment options, it seems.
Posts: 4590 | From Midwest | Registered: Jun 2008
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lymebytes
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Member # 11830
posted
I am not kidding when I say this, I would likely think I had MS if I hadn't of felt Lyme disseminate. I had cortisone shots and OMG, symptoms popped up one after the other. I remember asking at the MS boards about "cortisone" spreading "something" throughout my body. They answered, "IV cortisone helps us" I knew then, I did not have MS, cortisone nearly killed me and I literally felt each symptom appear AFTER a cortisone shot.
Then an Igenex WB IgM, IgG, Bartonella, Ehrilchia positive - all positive 2 years ago.
I wonder if my lesions were actually worse then?
I know (if MS exists) they have long remissions and then flares from time to time, my symptoms are consistently everyday, although they wax and wane in severity..I have looked at MS at Mayo and everywhere else in the past, I don't fit...at all.
I know Klinghardt believes LD can turn into MS, then you have Schaller who says Ms is untreated Lyme.
I'm also so sorry as I KNOW exactly how you feel!!! Did you get a copy of your MRI? If not, please get one!!!! Did they say where the leasions are in the brain?? It makes a big differance as far as you symptoms.
Who ordered the MRI and why??? Have you started developing new symptoms?? Have you ever had a nerve conduction study or an EMG??? Was it those tests that showed neuropathy? AND WHO IS YOUR LLMD???????? I'M VERY CURIOUS AS TO WHY HE/SHE FELT THAT IT WOULDN'T SHOW ANYTHING????
I've had Lyme/co. inf. for 17 years; dx 2 1/2 years ago. I was misdiagnosed with Lupus, Sjrones dis., M.S. and 'it's all in your head!' I've had many MRI's of the brain over the years. I had one in Dec. 07; then 3 months later in March 08. Dec. was negitive---showed nothing. Within 3 monthes in March I have leasions through out! Get this-----the Neuro. told me it was dur to aging!!!!!!!
I guess really my point is that I just balled when I got my rusults. I've always said when I suspected Lyme and after finally being dx with it that my biggest fear is that it would affect my brain, and that I would lose even more of my cognitive abilities. So when I got my results, it felt like my fear had come about and it has.
Not to say that this is what's happening or will happen to you. Everyone is different and it depends on which part of the brain has leasions!
I just wanted you to know that we certainly understand your reaction and your fear!
Would you mind sending me a PM and telling me what promted you to have it and what your symptoms are????
Thank You------Many prayers!!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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Boomerang
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Member # 7979
posted
So sorry to hear this. Try not to get discouraged...hopefully they will go away with IV.
Byron, did you have brain lesions also?
Best wishes to all.
Posts: 1366 | From Southeast | Registered: Sep 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Scared08 and Adamm,
I doesn't mention 'encephalopathy' specifically, I know that is a general term for disease of the brain, but my symptoms have always been nerve pain. That is it, besides muscle pain and the normal joint pain etc. I remain very clear headed as I have ever been (praying it stays that way) I do get brain fog when I am on abx that cross the BBB and a little shaky, it isn't fun, i.e., Bicilin was rough but good.
This is what it reads:
"Scattered nonspecific Foci (The origin or centre of a disseminated disease) abnormalities, in the subcortical and deep white matter. The ventricular and sulcal (grooves on the surface of the cerebrum) are normal. No cerebral edema (fluid) or mass effect. There are NO diffusion (The process of becoming diffused or widely spread) abnormalities to indicate the presence of infarcts (tissue death). Normal flow voids are seen within the large central arteries". (I was glad to see my blood flow is normal).
Scared08 - I think I have probably have had these lesions for a couple of years at least - I have had severe neuropathy (nerve pain). I wish I had a previous one to compare,(well I do, but it was 10 years ago and it was normal as far as I know) I am going to call and ask for a copy of that one in fact just to make sure.
Still, I'd be willing to bet this is better than it was..since my symptoms have improved somewhat, I have a ways to go for sure.
If anything my neuro symptoms are still there but better than when I started treatment 2 years ago, ESPECIALLY after my recent 5 months of Bicillin.
Thanks everyone...it has been a rough day for me. I appreciate you..thanks.
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I find that unbelievable, I have told him for 2 years, I HAVE NERVE PAIN, I am not sure what part of that he didn't understand.![[bonk]](graemlins/bonk.gif)
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