TS-HDS Antibody and Small Fiber Neuropathy

Hi - I have suffered from neuropathy pain since I was diagnosed with Lyme disease. It took two years to be diagnosed with it back in 2006 so I actually had symptoms since 2004. Just last summer I had the biopsy done and the antibody test TS-HDS and my level was 28,000. The pain has been about 8 for the past two years and now has started in my left calf and foot as well. I have tried all the medications and can’t tolerate a high enough dose to help. My Neuromuscular doctor has suggested a trial of Prednisone for 8 weeks. Has anyone tried this? I also just purchased a Quell machine but have yet to use it.
My sleep suffers and I have chronic tiredness (not sleepy) just drained and fatigued all the time. I have requested to join the FB group but haven’t been approved yet. I am thrilled I found this discussion since dealing with this for 18 years has been a nightmare and totally altered my life.
Kimberly812

Welcome @kimberly812, I saw this recent Dec 2021 article that might offer some help with those members dealing with the TD-HDS and FGFR3 antibody and neuropathy.

Science News: Clinical Features and Treatment Response in Immune-Mediated Small Fiber Neuropathy with Trisulfated Heparin Disaccharide or Fibroblast Growth Factor Receptor 3 Antibodies -- https://www.aanem.org/News-Express/Education/Science-News-Clinical-Features-and-Treatment-Respo

Since you also mentioned you have Lyme disease I thought you may also be interested in these discussions:
-- Lyme disease and neuropathy: https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/
-- Lyme Disease: https://connect.mayoclinic.org/discussion/lyme-disease-1/

Have you tried any lifestyle or diet type changes to see if they may help your symptoms?

Thank you for the links …I will definitely read them! My lifestyle hasn’t changed much since I was diagnosed. I worked until 2013 and have since retired. We are as active as possible since moving from
the Northeast I’m 2013 to NC we are able to get out to the parks…lakes and greenways to walk and I am a nature photographer so I take lots of photos.
As for diet I have tried all kinds of elimination diets removing dairy and gluten at times but none of that ever made a difference. In fact I was living with the pain quite well until about two years ago when it suddenly worsened and now at times it’s unbearable which can bring me to tears. I am not sure what happened to cause the change but that is what brought about all the testing I had done.
I am now again being treated for chronic Lyme and Bartonella since I began having rashes.
I truly feel there is no hope for me since I can’t tolerate medications and nothing else helps. Thank you again as I am going to read the articles now.
Kimberly 812

Hi Kimberly, I'm sorry that your pain has gotten worst lately. There's always hope. The Quell device is an interesting distraction and takes a day to get used to. Regarding your sleep or inability to sleep, which we know now is so important, my husband who has idiopathic neuropathic pain takes 5mg of doxepin at night (such a low dose that it's a compounded prescription.). This helps him get a great night sleep with just a little hangover.

I currently take 1 mg of Klonopin since it is also suppose to relax the muscles. I actually am able to sleep but it’s always unrefreshing. I have tried everything under the sun for sleep. I am now thinking I could have CFS as well since my fatigue is so prominent. I have been offered prednisone by my neuromuscular doctor which I might take him up on. I recently got the antibody test back which is when he offered the steroid. Thank you for responding.

Also I have only tried the Quell once and woke up so exhausted I couldn’t get out of bed. Not sure what it did but I probably had the settings too high and had it cycle too many times. Going to give it another go .

Regarding the Quell, it's very subtle and you don't want to set it to high. We've only used it during waking hours. May you be free from pain and suffering.

Hello, I just tested positive for the TS-HDS antibody... does anyone have any information regarding the progression of this? Can you stay stable or does it continue to get worse?

Hello @mforbes2209, Welcome to Connect. Neuropathy Commons has a good explanation of all of the antibodies associated with neuropathy including TS-HDS --- https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy

Have you had a chance to discuss your test results and questions with your doctor or have they suggested any treatments?

Hello Jan Star,
I am high TS-HDS but I was curious about your description of the pain, burning crushing feeling. Is this at the skin level or deeper if I may ask? only Asking because I am trying to understand in my case if TS-HDS could bring on my muscle pain (dr. doesn't think so, but hasnt given me a diagnosis other than this finding )