posted
I've had it in my feet every day for over a year now. Sometimes I can't have my feet touch the bed it's so painful. The only thing that has helped ME is a hot bath and it's only temporary.
I'm debating as to whether I should go to an LL neurologist. Any recommendations for one in CT or NY?
Has anyone had this resolve with abx? Have you done IVIG for it? Does neurontin work to mask the pain? Are there any effective natural remedies?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Have you tried B12 shots or Metanx (this is an RX B12, B6, folic acid tablet)?
Neuropathy is my worst symptom. I take Metanx, am on antibiotics and treating with Hyperbaric oxygen therapy. I'm hoping that my body will be able to repair itself once the infectious load of Lyme and Co is under control.
Posts: 5237 | From here | Registered: Nov 2007
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posted
May want to also ask your doctor about Alpha Lipoic Acid. Pubmed and other medical journals show it helps with diabetic Neuropathy so maybe it can help with Lyme as well.
Was researching it earlier today because my LLMD is starting me on it and I was researching its benefits.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Have you considered IV immunoglobulins?
IVIG
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Haven't seen the LLMD yet but my PCP put me on Lyrica and elavil for peripheral neuropathy.
I have it real bad in both my hands and my feet.
Posts: 115 | From Central PA | Registered: Jul 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I see an LLD neurologist in CT and I tested positive for small fiber neuropathy. You are describing the symptoms of it. Lyme and Bart cause it. I am being treated with IVIG. Infrared sauna also helps immensely.
If you have SFN you need to find out because it is degenerative and you will only get worse if you aren't treated. The only way to diagnose is a punch skin biopsy. I think a lot of people with Lyme have it and don't know it.
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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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
mine went away with tx and time
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Mine appeared suddenly while in the hospital on serious IV meds. That was in 2003 and I still have it. But it is slowly improving. At first I had to sleep without any sheet or blanket on my feet....it was like pins and needles!
My pain doc sent me to the lymphedema therapist (see my post on it) and that helped some. I take B12 shots, alpha lipoic acid, milk thistle. I try to move my feet as much as possible. My husband also has it. He uses a heated foot bath with epson salts.
I wear big fuzzy bed socks to protect my feet from the sheets.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
acupuncture has helped me. Definitely takes the edge off but doesn't completely get rid of it.
Posts: 48 | From Baltimore, md | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Epsom salt soaks helped me a lot.
-------------------- 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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
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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