I was dx with Lyme about 14 months ago. I have been chronically sick and in pain for about 5 yrs. not knowing what I had. I had carple tunnel surgery and came out with RSD that took another failed carple tunnel surgery, physical therapy, and 10 months of severe pain to regain the use of my arm. Then, both of my arms began to have nerve pain and go to sleep on a regular basis and I needed neck surgery for 2 disks were bulging into my spinal cord. Once that was done. I thought it was over, but it was not. I began having even more nerve pain and long story short was refered to a doc who told me no matter what he would find out what was wrong with me. I was diagnosed with Multiple Chemical Sensitivity and Lyme disease with coinfections. I have been on constant rounds of antibiotics, vitamins, and herbal supplements. I am still in constant pain and go through cycles of severe pain.
The pm doc I just went to wants me to try this RFA but, I fear it will increase my nerve pain, since it involves burning the nerve endings. I have had 4 nerve blocks and each one increased my pain. Has anyone with Lyme had this procedure done and was it sucessful? Thamks

Hi, I haven't had it done, but I think some people on the occipital neuralgia site on this forum have so you might want to check there.

take care, diana

Do not do a ablation. This is old school and the nerve will just come back with even more pain. Have you looked at the thoracic outlet board. it seems you have many of the symptoms.

I am lost here on this site - seems the only place I might be able to get answers though.... husband is suffering over one month now after radiofrequency ablation. Scalp apparently has neuritis (?) where should I post this?

Hi Marie, go down about 7 places to the occipital neuralgia forum, it's out of alphabetical order.

Take care, diana

I have had horrible neck pain, spasms, migraines, chronic nausea, etc for 10 years ever since I was rear-ended at a high rate of speed.

I kind of did everything in reverse order, and found a doctor that was willing to put me on antibiotics even though they couldn't diagnose me (I'd noticed when I took them for UTIs, etc I felt worlds better physically and mentally), then this doctor referred me to a pain specialist, who did the RFA, THEN I saw a Lyme specialist and got diagnosed....

Anyway, I am just now putting the pieces together and thinking that the RFA did indeed help with the Lyme. I believe my Lyme attacked my weakest spot, which was my neck due to the accident, and that is where they set up shop whilst invading the rest of my body.

After the RFA and the first few months healing period, my neck felt IMMENSELY better, like someone had finally cut the string that was wound too tight. However, the RFA in my neck also somehow cut my chronic nausea by 90% and I haven't had a single full-blown migraine since. In fact, I went from puking at least 3 times a week at random to only having thrown up once or twice in the last YEAR.

I have noticed in the last 6 months or so that I am getting random spasms but they only last seconds instead of days, and my nausea is slowly coming back. I was told the procedure doesn't "take" and in some cases has to be repeated in 6 months or a year, but sometimes never. I am one of those people that if there is a 0.002 chance of getting some rare illness a first, let alone second time, I get it three times. Yet the RFA "took" in me first try and did wonders.

I must warn anyone thinking about having the procedure--I don't know if its just my whacked out body not responding to meds right, or if it's a Lyme thing, but this procedure was the most painful, uncomfortable thing I've ever gone through. I was supposedly IV drugged and some form of sedated but I felt sober and thought I was going to pass out from the pain when they cooked my nerves. Had to dose me up with ketamine to finish, but now, 16 months post-procedure I would do it again in a heartbeat.

You won't keep me down, Lyme!