what makes you sure its lyme? does one positive westernblot (and some with only weak results) proof it?
do you know a complete list of germs that (besides endocrine diseases, diabetes and that kind of stuff) can cause burning pain?
which antibiotic (or other med) has helped you most against it?
thank you!
Posted by emh2l (Member # 18886) on :
Polyneuropathy has been my biggest complaint. I haven't tested positive for Lyme, although the LLMD I saw was certain it was. I'm not so sure. I've taken Doxy and Biaxin. Neither helped the pain, tingling, buzzing, numbness, although they did help my energy level.
I'd be interested in the answers to your questions, as well.
Posted by Jill E. (Member # 9121) on :
I know my polyneuropathy is one of the tick-borne diseases because I never had it until after the bite. I've had it for five years, it is not responding to treatment.
I've been treated for Bart, Ehrlichia, Anaplasma and Lyme. Just starting Babesia treatment, still positive for most everything.
I have always read and heard that polyneuropathy like what I have (burning everywhere, tingling in legs, symmetrical) is Bartonella, but it didn't get better on Bart treatment, but the electric shocks worsened on Bart medications.
Jill
Posted by Pinelady (Member # 18524) on :
I believe the pain/neuropathy is caused by vitamin deficiencies,
especially vitamin D.
I would go with what your LLMD recommends and when he recommends it.
I tried to replace my D at 50thou.int.units for 4 weeks and went totally neuro.
So I now believe you have to kill them off before you feed them.
Posted by steven (Member # 13101) on :
i haved checked possible reasons for polyneuropathy the last days again, but it really seems to be lyme.
the only thing that helped to stop my polyneuropathy was a hardcore-combination of rocephin 4 g + biaxin + plaquenil for nearly a year. i was without pain and meds for a year afterwards!
started a try with minocycline + flagyl a week ago. too early to say something about it, but dont feel good at the moment. of course i also take vitamins, but dont have the impression they make a change - as abx sometimes do. bartonella meds also didnt help me.
Posted by MY3BOYS (Member # 17830) on :
the neruopathy is a result of damage done to the nerves cells and the lining/synapse all because of lyme. so is cause and effect.
one neuropathy is there, lyme tx is now aimed at stopping any further progression. this is my understnading from my LLMD and my local neuro
the meds i am one that help are cymbalta, neurontin and baclofen for muscles pain/twitches/spasms basically lyme induced MS.
what damage has been done is now there, we are trying to stop further damamge.
as i said, this is how LLMD and neuro (who had training on lyme in NY, but i am his very first private practice patient and he knows enough not to want to touch the abt at all, gave me inital 3 wk couse of doxy and then had me find ID doc, and found lymenet and my LLMD. )
from how we understand my situation, i will be left wiht brain//nerve dammage that was done before dx was made.
hope this may help. from what i have been told my case was pretty "severe" before dx.
Posted by steven (Member # 13101) on :
"what damage has been done is now there". sorry, i dont agree.
i have experienced a painfree year because of antibiotics. i conclude that the pain doesnt result from permanently damagaged nerves, but from germs, that temporarily attack them.
lyme symptoms come and go - why should they if it was permanent nerve damage done?
Posted by ebbakarin (Member # 16362) on :
For those with peripheral symptoms a good general difference between an autoimmune peripheral-neuropathy versus a Lyme-induced one is where it originates.
Autoimmune neuropathies (e.g. CIDP, which my Mom has) usually manifest first in the feet.
A major indicator why my neuropathy was not CIDP was that my symptoms (tingling, weakness, numbess, tremor) manifested first in the hands. My Lyme diagnosis was made through a combination of my positive Western Blot, symptoms, and exposure risk.
I also improved dramatically with antibiotics (IV rocephin, flagyl, and Zithromycin). I can't say which worked best since I was taking all three at one point, but the IV rocephin certainly worked on its own. My regimen also included vitamins (D, Bvits, vitE, Mg, CoQ), epsom salt baths, and an anti-inflammation diet.
As I understand it, the rate and extent of healing from antibiotics is very unpredictable since nerve damage may be permanent, but not all the neuropathic symptoms are a result from damaged nerves. I don't think the science exists yet to know which is causing your symptoms. What can we do but pray for the best?
Posted by adamm (Member # 11910) on :
The Western Blot, while insensitive, is over 90% specific; if it's positive and you're sick, you need to treat for Lyme.