posted
I have been dx with both LD (positive tests with Ignex) and MS (MRI lesions etc) All of this about 1.5 years ago. I am currently taking abx for LD and have been for 1.5 years. Now I am on IV Zithro (have been for about 3 months now) and not really feeling any better. I am getting concerned! My main sx is unsteady/spastic gait-my walking/balance is horrible. Any opinions??
Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
MS is a disease named for a symptom. (Multiple Sclerosis) Lately anyone that gets a MRI with a non-lyme LLMD and shows lesions automatically gets labled MS. Lyme can cause lesions.
It seems your MS is an immune response to lyme. Some people consider it a mis-diagnosis of MS...but I feel fortunate that I actually found the cause of my MS.
Being treated for lyme for 1 and 1/2 yrs and I am doing so much better. If you can get to a good lyme knowledgable neurologist, (maybe you already go to one) it could be explained better.
posted
I was dx with MS 18 years ago. After all this time, I got really much worse these last 2 years. A few months ago I tested for Lyme, and sure enough, I'm positive.
My biggest symptoms are balance (horrible!) and stiffness walking too. Frankly, I can't get around anymore without help.
You must remember that Lyme causes lesions (sclerosis). I have them too. Thing is, they were caused by Lyme.
So, if like me, your diagnosis for Lyme is probably what's causing your lesions. MRI results alone cannot and should not diagnose an illness- especially MS where they give drugs to shut off your perfect immune system! You need your immune system, especially with Lyme.
I would hope that taking abx should help kill those bugs. I'm surprised you don't feel even a little better. Was there maybe something small that's improved??
------------------ Bye for now, SAK
Posts: 371 | From Up North | Registered: May 2005
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posted
Sorry - I did n ot want to type a "book" - Yes there have been slight improvements - like my joint pain and memory is not quite as bad - but this whole walking thing is really bothering me.
Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
If you were fine before, I would suspect Lyme as the cause.
I have 3 lesions on my brain, and I suspect they are from the lyme, although before my positive WB, my neurologist suggested the could be from migraine headaches. Do you suffer from migraines?
Maybe changing to a different antibiotic is in order. You might want to discuss it with your LLMD.
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
If you were fine before, I would suspect Lyme as the cause.
I have 3 lesions on my brain, and I suspect they are from the lyme, although before my positive WB, my neurologist suggested the could be from migraine headaches. Do you suffer from migraines?
Maybe changing to a different antibiotic is in order, or maybe you are full of neurotoxins from the abx doing its job. You might want to discuss it with your LLMD.
I also got referred to an article on neurtoxins from the nice people on this board (now if my lyme-brain could just find where I put it).
If no one re-posts, I will find it and send to you.
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
If you were fine before, I would suspect Lyme as the cause.
I have 3 lesions on my brain, and I suspect they are from the lyme, although before my positive WB, my neurologist suggested the could be from migraine headaches. Do you suffer from migraines?
Maybe changing to a different antibiotic is in order, or maybe you are full of neurotoxins from the abx doing its job. You might want to discuss it with your LLMD.
I also got referred to an article on neurtoxins from the nice people on this board (now if my lyme-brain could just find where I put it).
If no one re-posts, I will find it and send to you.
posted
JB - I notice that you are form Old Bridge, NJ - I am in Brick, NJ - not too far from you. Do you have a LL Neuro? Who do you see for your LD? I see Dr. S. in Howell.
Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
My LLMD is Dr. E in Jackson, who I just got connected with thanks to Julie (lymeinhell). Dr. E is very cool.
Before that, all the Doctors said that I didn't have lyme, even though all the symptoms started after a tick bite on my head. Amazing how stubborn some doctors can be.
I am seeing Dr. L in East Brunswick as my neurologist. I know he is aware of lyme, but I can't say if he is lyme-literate.
I have a follow-up appt with him in Sep, but haven't discussed lyme with him yet, since I didn't have the positive WB until a few weeks ago. He DID have them test for lyme when I had a spinal tap done (eeeccchhh!)
I will let you know how it goes in Sep, if you like. He is supposedly a very good neurologist.
We can't post Doctor's names, but I can email any info you want.
posted
Kare, Was the walking trouble one of your first or last symptoms? I'm thinking that if it was one of the first problems, maybe it takes more time to get over.
My walking stuff was my last symptom problem, and doxy (which is my first abx and I started recently) has helped a wee bit, sometimes.
These ooh so slight improvements are only glimmers that are too short and over too darn fast...
------------------ Bye for now, SAK
[This message has been edited by SAK (edited 26 July 2005).]
Posts: 371 | From Up North | Registered: May 2005
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johnnyb
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Member # 7645
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