lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Dont shoot me here for asking a redundent question but,
I have been in treatment now for 4 years. The neuropathy started pre treatment about 6-7- years ago.
When I avoid thinks like sugar, excesive excersise, and mold I dont have that much burning.
Herxing always brings it on.
When does it truley go away? Should I be switching to another abx?
The Biaxin I have been on for years is my stand by. When I go off it I get very weak.
Im wondering what exactlly the neuropathy is from.
Posts: 2905 | From New England | Registered: Sep 2004
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I believe that lyme plays with our endocrine system wrecking havoc on our insulin.
I have suffered from neuropathy for years, and it did get better with treatment, but never fully went away.
It wasn't until recently, I have been having blood drawn to check hormonal fluctuations, including insulin abnormalities, and that seems to be the problem.
Always check not only glucose by insulin levels when you have lyme disease.
Posts: 1603 | From ny | Registered: Aug 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Dr. Jacob Teitelbaum has good information about treating neuropathy.
Hope this helps. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Doxy made mine so much better. The crawling went away entirely and the burning is so much better.
I'm off doxy now and on treatment for bart and it seems to come and go now but it is never as terrible as it was before I started treatment.
My dad used to get really bad neuropathy as a result of diabetes so blood sugar is a good thing to check too.
Hope you get some relief soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
My blood sugar is always normal. Once it was low.
I guess if the doxy made it go away then that means that its immune related.
Im just trying to figure out how the spyrochete or mycolasma bug gives us neuropathy. And why is it worse after sugar?
Posts: 2905 | From New England | Registered: Sep 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Since Doxy also made my bart streaks come out, my guess is that Bart caused the neuropathy but doxy also treats lyme.
Edited to add that treatment for babs may have helped too because one odd symptom of neuropathy can be an inability to sweat. After babs treatment I was finally able to sweat.
Terry
[ 09. June 2008, 11:13 AM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:Im just trying to figure out how the spyrochete or mycolasma bug gives us neuropathy. And why is it worse after sugar?
Infections cause neuropathy because they damage our nerves. Bacteria and viruses damage nerves and they also cause more toxins and inflammation which can damage nerves further.
Some infections cause autoimmunity which is another cause of nerve damage.
For those with fibromyalgia, trigger points can put pressure on nerves and cause neuropathic pain.
I'm not sure about all the mechanisms of how sugar can make neuropathy worse but sugar does depress our immune system allowing infection to get worse.
I'm digging up some of my old research on some supplements that might help with neuropathy and I'll come back and add to this post as soon as I find it. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
In my case it went mostly but not fully away with time...I found neurontin and ultram to be a quick temporary fix so I could sleep at least.
Also activated charcoal or questran taken way away from meds and on an empty stomach seems to help also.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I think sugar spiker insulin and also other cytokines. I think that the nerves are sensitive to these inflamitory chemicals and this is why my nerves hurt.
Posts: 2905 | From New England | Registered: Sep 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Mine responded to Bart treatment. Needed specific abx to target the source.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Foggy, what abx are for bart?
quote:Originally posted by Foggy: Mine responded to Bart treatment. Needed specific abx to target the source.
Posts: 2905 | From New England | Registered: Sep 2004
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Shosty
Unregistered
posted
I was on abx for 6 years, and neuropathy improved but didn't go away. Felt stuck on abx, because whenever I tried to stop, things got so much worse.
I thought this worsening was the result of the bacteria coming out and having a party, so to speak, but later learned that abx are anti-inflammatory. With the new thought, I withdrew gradually, lessening dose and increasing time between doses, and got off abx.
I still have some neuropathy,but I had been plateauing on abx, not getting better or worse, and am pretty much in the same shape off abx as on.
Am now doing other things to address neuropathy, with an alternative doctor. Everyone seems to end up doing these things, to get better, once abx are done or no longer helping so much.
Consider yeast treatment with fluconazole for a month or so. The worsening with sugar might indicate a yeaat problem.
Consider trying an elimination diet to identify food allergies, which can be identified specifically once you "challenge" food one by one, by trying to eat them again after two weeks without.
You may have leaky gut, from the antibiotics/yeast, which makes your gut lining porous, allowing food (including sugar) to enter your bloodstream without going the usual digestive /liver route. This can cause symptoms right after eating, like feelings of swelling in your brain, or nerve pain and tingling etc.
Have an ANA test done as a preliminary investigation of whether the Lyem triggered autoimmunity for you.
If you have leaky gut, yeast treatment and taking a liquid called Gastrocrom before eating will help a lot. Plaquenil would help autoimmunity. Glutathione and other treatments can help with toxins. People on this site know a lot about this stuff.
Think of it this way: absolutely anything that causes or increases inflammation can increase your Lyme symptoms/neuropathy.We get used to thinking it is the bacteria doing it, but if we change our thinking, there are other possible causes. (Food, mold, exercise are all possible causes of inflammatory reactions.) In fact, after a long time, antibiotics can even cause or increase some of these symptoms.
I am not knocking abx as treatment, and may have to go back on myself, this week. But it is a balancing act, because they can also cause leaky gut etc. And the anti-inflammatory effects of abx maybe doing as much as their ability to kill bacteria, an effect that can be attained in other ways.
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