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Lyme and peripheral neuropathy

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Posted 1/13/2015 3:14 AM (GMT 0)
I got diagnosed with Lyme disease in 2006 after being infected for approximately nine months. I was treated by LLMD with the total array of antibiotics used for treatment of Lyme. Before being treated I would get tremors in my feet that would come and go, and my feet would get cold and then warm. My left index finger would twitch and my jaw or teeth would chatter. After about a year of treatment I was released but I had relapses that included vertigo and lower leg pain. I went back on doxycycline and that went away finally. Since then it has been kind of up and down or it seems to come and go. about 2 years ago the tremors started in my feet again and then I started with foot pain. Went to normal MD and said it was plantar fasciitis and told me stretch my feet. That didn't help so I went to a foot doctor, he told me I need orthodics, so I trie that and it didn't help. Finally, I did my own research and figured I had peripheral neuropathy. Went to my normal Doc and he verified what I thought with an EMG. He put me on Lyrica and I have been on it for a year. It doesn't seem to be improving. I just saw a Neuroligist and he wants to do another nerve test (EMG). I have seen where they have used IvImg (Intravenous Immune Immoglobin) to boost the immune system and help repair nerve damage. Has anyone else had this problem or do they have any information concerning some type of treatment.
Posted 1/13/2015 5:20 AM (GMT 0)
Hi 4runner, they say (meaning my llmd & others) IVIG is the BEST for the peripheral neuropathy. The only thing alot of times insurance wont cover and it is HIGHLY expensive....we're talking like 10 grand a month expensive!!

I deal with the p.neuropathy myself. For some reason, some with lyme/co's are more prone to this happening than others. I personally think its a matter of getting *ALL* the infections (bacterial load) down in the body and all else will fall back in place and normalize for the most part. IVIG essentially regulates the immune system as the infection(s) are causing auto-immunity to be triggered where immune system is attacking our body instead of the infections then causing neuropathy. Lyme/co's are SNEAKY bacteria and know how to evade/hide from immune system for survival.


When you treated before...did you address any other infections besides lyme? Maybe that is why it came back. We have to get it ALL or we cant get better. Ive come to the realization that it is just best to treat for everything just to make sure we get it all! Meaning especially the triple threat BBB's (Borrellia, babesia & bartonella). I read Dr J in DC does this and then ended up reading from another llmd thats does this as well. The tests are just not always reliable unfortunately.

So if you can take advantage of IVIG therapy then that would be awesome. I believe there is a test they will use to test for immune deficiency for you to be approved however I cannot remember the exact name. But all in all, just make sure you have a good treatment plan lined up with an LLMD to get rid of the infection(s) would be my suggestion also. I can testify with treating of the infections, I recently have gained some ground with the neuropathy lessoning (*knocks on wood* & NO JINX!) lol sorry, always afraid to jinx myself by opening my mouth!


~Hope you find some relief soon~

((Hugs))
-Courtney
Posted 1/13/2015 1:01 PM (GMT 0)
Hi 4Runner and welcome!

I didn't suffer from this but know plenty who have. Have you been detoxing at all? If not, toxins can and will do lots of damage (but not permanent).

There are detoxing instructions in the sticky thread on top of this forum called "New to Lyme? Start Here!"

Also, when lyme bacteria die they leave a neuro toxin called Ammonia and when ammonia levels are too high they also cause lots of problems.

If you want some links to articles, let me know and I will provide them for you.

Hope this helps,
Denise
Posted 1/13/2015 3:53 PM (GMT 0)
Orchid_rain

I was treated with a large group of antibiotics,  I did pulsing, on and off cycles of abx.  I also was put on Mepron, (drug uses previously to treat malaria) to help with other infections.  I would get better for a while, then after the end of treatment I would eventually have some problem return and I have been dealing with this on and off for eight years.  My biggest problem right now is the neuropathy.  It got so bad in my feet, I retired earlier than I intended to from my job.  The neuropathy seems to be taking over and I really want to try and beat this if possible. 

Deejavu,

Thanks for the comments, and I will look into the detox and articles you talked about.  I really want to try what I can to beat this. 

Thanks so much for the reply,

4Runner

Posted 1/13/2015 4:05 PM (GMT 0)
Welcome 4Runner!

Most of my symptoms are related to my peripheral nervous system and I know I will be happy when they're gone.

Things have greatly improved for me in that regard since I've been supplementing with methyl B12 (I have a MTHFR mutation that necessitates methyl B-12), R-form Alpha Lipoic Acid and, most especially, taking Pinella detox tincture 3x/day.

Dry skin brushing has actually alleviated immediate symptoms for a little while afterwards so that tells me there are toxins in my nerves.

I used to deal with numbness that was most often confined to the left side of my body. There were times the numbness was so severe that I couldn't do certain things with my hands....and other times when a numb left leg made it difficult to walk. I also had mild Bells Palsy and internal vibrations that usually manifested in my left knee.

With the exception of the Bells Palsy, I did not have these symptoms when I started treatment....they all occurred as a result of my body not being able to keep up with detox.

The only symptoms I have now are mild poking and/or buzzing sensations that come and go throughout the day. I'll be starting an herbal protocol per my LLMD next month in the hopes of eradicating those final symptoms.

Best of luck to you as you work towards beating Lyme. I know I speak for everyone when I tell you that we are completely with you on that one ;)
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