posted
My dh has had PN for 6 years now. It came out of nowhere when he had a reaction to prescription medication. It has gotten progressivly worse over the years.
So much so that he has lost all feeling except for pain from his toes to his knees and in both hands.
He was diagnosed with Lyme and Erlichea in June of this year and is taking Doxy 400mg daily and plaquenil. Right after he takes his abx for about an hour his pain skyrockets and then settles down to his normal 7-8.
He has had biopsy's and nerve conduction studies which show he has progressive neuropathy. According to his neurologist the cause of his PN is unknown. Can't believe with his history that she never even considered Lyme!
I would love to hear from others who have/had PN and what their experiences are after treatment. Has the progression stopped? Has it gotten better? If so, how much? If not, has it gotten worse?
For years my husband and I have figured that life as we knew it was over. But now that he has a dianosis of Lyme I can't help but wonder if he has a chance of regaining some of his former physical abilities.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I had neuropathy. Loss of feeling in my fingers and some in my feet. Burning, tingling, numbness. I was always burning my mouth because I couldn't tell when something was too hot. The nerves in my mouth did not register heat very well. I mean these were very bad blisters so I think my nerves were very damaged.
After several years of treatment with a great LLMD I got feeling back. What a shock to learn that I couldn't pick up things that I used to pick up because they were now too hot. Same with food. The burning sensations in my feet and hands are mostly gone as is the tingling and numbness but they do come back once in a while.
Personally I think it was doxy and treatment for biotoxins with actos and cholestyramine along with treatment for my methylation issues that made it go away. You might consider B vitamins to help the nerves heal.
I also had very high levels of pain for 9 years. I hurt from head to toe and the pain was excruciating. It was 24/7 and would wake me up at night. After 6+ months of IM ceftriaxone, the pain was down by 70%!!
I was never diagnosed with neuropathy so I don't know what they would have called the damage but I have no doubt that it was neuropathy. Many in my family have it so I'm well acquainted with it.
Hang in there. There is hope!!
Wishing the best for both of you, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Look into benfotiamine. It's a fat soluable B supplement of some sort. My ND put me on it, though I'm not 100% sure I have PN - it's not severe anyway. I've not (yet) been dx'd with Lyme, but apparently this medication is very good for PN. It is OTC so you can Google it and see what you think.
Posts: 10 | From Maine | Registered: Aug 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes--Treatment can get rid of the neuropathy. It may take months but it worked for me. B12 IM helps loads.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I have with antibiotics and methyl b12. Keep the blood moving. It takes the nerves a long time to regenerate. I use sock warm ers in the winter bc the cold would male the pain unbearable. I also take neurotin to deal with the pain.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a group at www.lymefriends.org called Neuropathy. Please feel free to check it out; you might find some useful information.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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