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Health Update - Neuropathy Anyone?

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Posted 1/31/2011 6:58 PM (GMT 0)

I have been away for a while, but I hope that everyone is doing well in their pursuit of finding improvements.

I have had Lyme since June 2009.  I was diagnosed within 6 weeks and received antibiotics doxy, amox and IV-Rocephin.   I stopped treatment for a while and agreed to a lumbar puncture after my neuro symptoms and neuropathy spread into my entire body.    I got with an LLMD last April and treated with high dose antibiotics for seven months straight.   In October I began IVIG treatments to help reset my autoimmune system and halt further progression of my neuropathy which is now causing balance and walking problems.    A few months ago, I stopped all antibiotics so i could better evaluate the benefits of IVIG.   My plan is to continue IVIG for 3 more months to see if it provides any significant improvements.

My symptoms now are:    Neuropathy (Numbness/Tingling)  in my face, neck, lower back, arms, hands and into my legs and feet.   I suffer with significant cognitive issues which make it impossible for me to work in the same capacity as prior to Lyme.

QUESTIONS:

Does anyone else here suffer with Neuropathy as a major enduring symptom?

Has anyone experienced muscle loss or atrophy as a result of Neuropathy?

I appreciate any info you can provide.

Peace & Healing,

Betterhealth

Post Edited (betterhealth) : 1/31/2011 12:04:36 PM (GMT-7)

Posted 1/31/2011 9:52 PM (GMT 0)
Hi Betterhealth,
I am so sorry to hear that you are still struggling. I wish I had something to share that would be helpful to you, but even though I do have neuropathy - it's no where near as advanced as yours.

I do wish you peace.
Trav
Posted 2/1/2011 3:20 AM (GMT 0)
Hi Traveler,
Thank you for your response and well wishes. It seems so strange to me that while many lymies do experience some neuropathy, very few seem to be effected in the way that i am. I have only met one other person here that suffers with full body numbness. I am still hopeful that the ivig treatments will help me eventually recover.

I would still love to hear from any others who experience neuropathy too.

Peace & Healing,

Gary
Posted 2/1/2011 5:21 AM (GMT 0)
Yes, I've had muscle atrophy from neuropathy...my right lower leg has never recovered the muscle mass lost when I had RSD, despite intense physical therapy.

As for the neuropathy, are you sure you are getting enough B-Complex and extra Vit. B12? These vitamins are essential for nerve repair.

Other nutrients needed for nerve repair include calcium, magnesium, Vit. C, and avoidance of neurotoxins (artificial sweeteners, MSG, etc.).

I really hope the IVIG helps...my doctor has tried talking me into using this but I'm uncertain about it because it is a blood product and I'm nervous about that sort of thing (I don't like taking glandular supplements either)...

Take care,
Posted 2/1/2011 11:12 AM (GMT 0)
HI
I have Neuropathy now.I must say that my main sypthom is Neuropathy-numbness,weak legs (now is right leg) now even part of my face is numbed.Usually after 4 weeks it's better, but after some time this backs.And i'm horrible tired, i can't walk for long distance.In moments like this i'm nor able to work.The best treatment for this I think it's rest .I also take B12 injections.
Posted 2/1/2011 7:41 PM (GMT 0)
Razzle and Marzena, thank you for your responses. I am taking several supplements including B Complex to help repair my nerve damage. For some reason vitamin B causes muscle twitching for me and makes my nerves extremelly sensitive. At this point I am just hoping that the nerve damage that I have is not permanent.

Gary

Posted 4/11/2014 4:11 AM (GMT 0)
Dear Gary, (betterhealth) how did the IVIG worked for you, hoping you are all better. I also have severe neuropathy and just came across your post. Best MM
Posted 4/11/2014 3:16 PM (GMT 0)
Hi gypsy,

This is an older thread so it is likely that this member is gone and healed. ;) Neuropathy is very common with lyme and does heal with most afflicted. Neurons are one of those things though that take a loonnng time to heal. Hand in there!

~beth
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