Madisongrrl SFN update
 

For those who have followed by story, I thought I'd provide a quick update.

I had a very fast onset of SFN symptoms early in 2014. I went through a metric ton of trouble with my HMO trying to figure out what was wrong with me. I was told fibro, CRPS, anxiety, etc depending on which clinician I saw. I had all the typical SFN symptoms - hot, wet, warm sensations; tinnitus, buzzing, tingling, vibrating, and then moderate to severe burning all over my body along with all types of migrating pain, like many on this message board.

The teaching hospital cleared every thing up and told me I had SFN symptoms and found temperature loss in my arms upon physical exam. The punch biopsy (2 sites) in my legs was normal (performed in house). I was discharged to pain management and left to my own devices to figure out a cause. I also have a vestibular disorder that seems unique; warm sensations in my left ear with disequilibrium. ENT at the teaching hospital didn't have any useful answers other than to do vestibular PT.

I saw a functional medicine doc at the onset of my symptoms in 2014. I followed up again with her this week. She is concerned with my background - I have pretty much lived in the woods and camped in the great outdoors for the last ten years while racing my mountain bike all over Wisconsin and the Midwest. We are known for tick-borne disease in the great state of Wisco....

I had conventional Lyme symptoms back in 2005 several weeks after a deer tick bite (with 4 negative CDC Lyme screening tests). My functional medicine doctor is not a Lyme expert. She does use the ispot Lyme test from Neuroscience, but she wants me to see a Lyme literate clinician....so she didn't test me as the individual she is sending me to utilizes another test.

This Lyme literate clinician is a nurse practitioner and also a naturopathic doc.....it will be interesting for certain. I'm in the process of setting up an appointment and will keep everyone updated.

Be prepared.
Are you going to be open to trying antibiotic therapy?
You will most likely be diagnosed clinically with a tick borne illness as every symptom you have is consistent with neurological lyme.

I live in the highest lyme rate in the country.
I too have almost every neurological symptom except for swelling in any of my joints.The lack of swelling in my joints is what causes the infectious disease dr. to think it is not lyme. I went to an llmd and he was ready to treat with tetracycline, diflucan, and an herbal formula. He said it could take over a year of treatment.

My neurologist doesn't think its a good idea- won't tell me what to do, but doesn't think there is enough evidence that the llmd's are right. I went in February to the llmd. I told him I will wait it out and decided if things got worse I would go on the treatment. I am going to see what happens until around October/November and then revisit the option.

I did try a month of doxycycline given to me by the infectious disease doctor because he told me that there is a strain of lyme that doesn't have a test yet. It didn't help or cause a herx. I asked the llmd why and he said it wasn't the right med to target the infection.

I'm not trying to deter you at all, just giving my experience. I am in the middle with this decision myself.

Thanks for all your thoughts, Healthgirl.

I'm not sure that his Lyme literate individual necessarily treats with antibiotics, so she seems to be different than most Lyme literate physicians who will pump you full of antibiotics for years on end. She also doesn't use the Igenex test either.

That being said, I'm open to antibiotics for a short period of time only. I've been trying to sift through all the medical literature on Lyme disease. My background is not in microbiology so I find it difficult to understand the validation on some of the testing.

Lyme is such a complicated topic. The CDC is not the end all be all source of information. They have really done a poor job. And the Lyme literate docs think everything thing is Lyme disease. The truth is likely somewhere in between those two extremes.