Quote:
Originally Posted by mrsD
I'll tell you what I think... but this is not a diagnosis by any means...
Antibiotics work by affecting either the cell wall of the infectious organism, so it dies, or by attacking the DNA of the organism.
With time they will do this to you too.
If your dorsal root ganglia along the spine are damaged by the Lyme process or the drugs, that is a serious thing. Some people lack the genes to make the nerve growth factors to repair this.
There is a special MRI test that will show dorsal root damage. Have you had it?
This is the link to that thread:
http://neurotalk.psychcentral.com/thread147771.html
The fact that gabapentin works for you, hints at this because that is the level that this drug often works at.
Supplements to target mitochondrial damage are acetyl carnitine,
lipoic acid, and CoQ-10. Ribose powder (a sugar) also may help
with normalizing ATP production in the mitochondria.
Magnesium is important too, as it functions at the mitochondrial membrane.
I have these supplements in the supplement thread:
http://neurotalk.psychcentral.com/thread121683.html
If you haven't read the mito threads yet, I'd search them
"mitochondria" because this is where the damage can occur to nerves.
In your case things are really complex. Could be that a bunch of factors co-exist given your Lyme infection which impacts nerves, and the antibiotics which also carry their own risks with long term use.
For symptom relief of your feet, have you tried Biofreeze gel?
This really works for me and some other posters here too. The gel carries the menthol thru the skin quickly, and the menthol then stimulates cold receptors to override perception of the heat sensors which seem to be the most affected by PN.
Biofreeze is now available at low prices on Amazon, and iherb.
I've used it for years now when my feet flare up at night. It never fails me. I think it is worth a try... as it is under 10 dollars.
A little goes a long way. I learned this trick from physical therapy I had several years ago for a tendon injury. My therapist mixed Biofreeze 1/2 and 1/2 with the ultrasound lubricant for my Ultrasound treatments, which they ramped up in power. |
I have not had this test and have already sent an email to my neurologist for information on where to have it done. Thank you. If it does prove to be the cause, is there anything one can do (other then trying supplements)?
My feet (all my pain is symmetrical) burn 24-7 when the Neurontin isn't working. Now, it's my legs and random places all over my body, including my mouth. The neuro stated that when it travels or is spotty, it's likely autoimmune. Given the aggressiveness and destruction lyme does to one's body it wouldn't surprise me if some of my issues were autoimmune and some were still lyme or other factors (that we can't find). HOWEVER, if the PN portion of what I'm dealing with was autoimmune, the IVIG should be helping.
I do work with an integrative doctor already but he's very lyme disease focused (for the most part). He's had me do chelation, lyme therapy, B vitamins, elimination diets, etc. As I mentioned- we've been aggressively attacking this neuropathy for 4+ years. He most recently mentioned taking silver- which I won't do.
I feel like we are MISSING something. I don't know why, but it's just the feeling I've had from day one.
I did get my B labs back and I don't understand the results. It says the normal range is "243-894" and I'm 1799. That is VERY surprising considering I hadn't started vitamin B treatments yet!
The integrative doctor wants me to go back on the antibiotics(Bicillin injections and Septra) to see if it helps calm this down but It feels like such a vicious circle. If I beef up all my B's and mito support, can I protect myself form further damage from the antibiotics?
THANK YOU so much. I truly don't know where to turn and NEVER thought I'd still be dealing with this 4 years later.
Kate