Originally Posted by kyle1
How long did you have lymes disease before you went on treatment? Did you have alot of the neuo symptoms as well?
Some neuro symptoms, mostly brain fog. See my story:
I started to get weird symptoms in May 2004. Wasn't diagnosed with Lymes til August 2004, and was pretty much incapacitated. Was given the "standard" abx of Doxycycline 200mg for 3 weeks. Didn't feel any better, and got a bout of C-Diff and yeast infection to boot.
Wandered from doc to doc (the worst and most useless was an Infectious Disease doc), got 2 more tests, both of which were CDC-negative, talked my regular doc into another regimen of abx, but he wouldn't try anything but the "standard" treatment. No effect. Was basically told that Lymes was hard to treat, and that I'd have to live with it.
I carried on until April 2006, with relapses, I'd suffer for a month or two, I'd recover a little, and carry on. April brought horrible changes in my life, and I had the worst relapse yet. Was totally flattened. Even worse, had a large section of my foot taken out because of possible melanona (thank GOD it was merely abnormal and it appears that they got it all). And my father in law was dying from melanoma to boot. I was on crutches unable to even put weight on my foot, had a forced move to a new house (bad neighbor problems) and couldn't even help my wife with her father. I was ready to roll over and die.
I was fortunate enough to find a local doc who was open-minded enough to try new treatments. Turns out that he and a couple people on his staff had contracted Lymes, so he was at least motivated to learn more about it and how useless the standard treatment was. I was tested again and had 4 bands on the Western Blot test. He started me on 400mg/day Doxycycline and it appeared to be helping. He put me on 5 months of Doxy and Tindamax for the cyst form. Then he announced that he was closing his practice and moving out of state :0
So I was back to square one, basically. I kept taking the abx while looking for another doc. A month later I found a Lyme Doc for my father in law in the next state over (he'd been bitten by 2 ticks on the same day; had 2 bullseyes). I ended up calling up that doc, and he's been a life-saver so far.
I had a major reaction to the Doxycycline; little red rashes all over my body that resembled vasculitis. My dermatologist sent me off for lots of tests, all of which came back negative fortunately (some of the possible causes were really AWFUL). My new Lymes doc put me on Minocycline in the hope it'd not trigger such a reaction. Poof, in ONE day, the rash returned. We're thinking I'm allergic to all the tetracycline drugs. Oh no!
He puts me on no meds for a month to allow my immune system to calm down. Once the month was over, he starts me on an interesting regimen of Benicar (to reduce the inflamation so the abx could get at the spirochetes more easily), Vitamin-D supplementation (I was very low onVit-D) and Cefzil. I was to start to take the Benicar but no abx. Interestingly enough, I started to get a few of the red spots during the period when I was ramping up the Benicar and NOT on abx (he later said that he thinks the Benicar has some effect on the Lymes spirochete, but that abx are still needed to effect a cure). We then started up the Cefzil.
After 2 months, we added in the Tindamax.
With this doc I was on:
500mg 2x/day Cefzil
40, then 80mg/day Benicar
4000 IU/day Vitamin-D3
tons of acidophilus tabs
numerous other supplements to help support my system.
My doc is of the belief that Lyme's is primarly an inflammatory disease, due to the immune system reactions the spirochetes provoke. He uses the Vitamin-D3 25 hydroxyl levels as indicator of levels of inflammation in the body; low levels warrant Vit-D3 supplementation until the levels are consistenly high. He also believes that the Vit-D3 + Benicar combo helps reduce the inflammation that the cyst form of Lyme's creates around itself to hide in the body tissues. This allows the antibiotics to get at the cysts more effectively.
The Tindamax is critical for a "cure" in that it kills the cyst form. If you don't take it plus another abx at the same time, you will probably get a relapse when you stop the abx.
As for tests, he did a typical standard test regimen, plus specialized thyroid tests, stool tests (which detected major yeast overgrowth and food allergies to soy and dairy), several CD-57 tests, several Vit-D level tests, several Babesia tests (all negative).
All told, I spent over $6000 USD, with only about 10% reimbursement from insurance (out of network doc since I could NOT find an in-network doc who knew how to handle my case). Add in about $5000 in prescription meds and supplements. Add in about 2 years of not working much. Lyme's cost me about $40,000 all told.