Posted 7/18/2016 9:31 PM (GMT 0)
Hello, All. I've been lingering for about two weeks or so. I've read all the New-to-Lyme's material. But I have a few questions (actually more like requests for confirmation, hope, validation). But first a quick summary.
I was bit by a tick June 2015. I went to the ER, as it was on a very, um, delicate part of my anatomy. The doc took it off, gave me four 100mg Doxy tablets, and told me to take two tablets that day and two the next. That would do the trick. Fine. I popped them and never gave it a second thought. A week or so later, I developed the bull-eye's rash. I didn't think anything of it because the doc told me I would be fine. (I'm still trying to let myself off the hook for this.)
Since then, it's been a string of symptoms--oddly, mostly serially rather than clustered.
Wicked headaches for seven or eight months
Heart issues
Skipping beats, fast heart, pounding heart
Sudden flu-like bouts that lasted several hours' long
One wickedly bad flu that lasted five weeks. Couldn't get out of bed.
Malaise, tiredness, depression, mood swing
Tinnitus
Extremely low vitamin D (9)
Low testosterone
Disturbed sleep
Anxiety
Erectile dysfunction
And then...the burning patches that migrated around my body, burning feet, etc.
I had been going to the doctors for the other symptoms, but it burning that sent me to a neurologist. Bottom line: I was diagnosed with small fiber neuropathy.
Both neurologists I saw, an infectious disease specialist, and my LLMD say it's caused by Lyme's. Now, I was the one who put the Lyme pieces together. Although I tested negative on the Eliza and Western Blot, my PCP, the ID, and my LLMD diagnosed me clinically. I'm awaiting the results from Igenex, which my LLMD sent out last week.
Now all the docs said they believe the pain/burning will go away, as I've only had it for about four months, but only AFTER the Lyme is under control/eradicated/cured--whatever we're calling it these days. And it will take time, as nerves take so long to heal.
Before stating my LLMD's protocol, I was on Doxy 100mg twice a day from my PPC for 20 days of what was supposed to be a 60 or 90-day treatment. But once I saw my LLMD, I started his protocol (200 mg Doxy twice daily, 500mg Azithromycin once a day, two Malarone 250/100 on Fri, Sat, Sun) I saw an immediate improvement in symptoms. The patches on my body disappeared. In addition to the meds, I walk 2 to 3 miles at the gym everyday and spend 10 to 15 minutes in the steam room sweating. I eat mostly Whole30-ish.
On day 8 (yesterday), all hell broke loose. The burning/sunburn was everywhere at once: back of hands, palms, forearms, back of upper arms, all my back, tops of thighs, forehead, feet. My knees hurt, I had a bit of headache, and my neck was sore. I figured it was a Herx. But I'm not sure. Today all is gone except the feet disturbance, which is on and off.
So, here's the crux of my post: I really, really hope that others have experienced a remitting/reversal of small fiber neuropathy/neuro symptoms. I don't have a bad case (at least now), it just scares the hell out of me. My big fear is it will get worse. So, have you noticed a remittance of neuro symptoms with proper Lyme treatment? Any encouragement and positive words would be greatly, greatly appreciated.