Wednesday, August 15, 2012

I am still in the lyme lands. Since treating babesiosis last year I have gotten better, but not well. I live in lyme limbo, well enough to get through my good days, but cycling every month with bad days of incapacitating flares of nerve pain so deep I can't breathe. The symptoms have completely changed their nature; where I had classic throbbing migraines before, I now have headaches that start in my nerves. I also now have lower rib aching, spontaneous scabs on my body, eye, scalp and all over body itching, vagus nerve pain and thus a gag reflex and hot flashes.

Dr. X and I are still doing a multi-pronged approach. Finally my hormones are being addressed. After a month of testing my estrogen and progesterone every week, it is determined that I am at levels so low they are almost unable to be registered. I had been asking doctors to test me every week for a month since I first got sick 3 years ago. The endocrinologist tells me I am in early menopause. I don't entirely believe this though. I think it's because of being so sick, all of the meds I've been on, and the fact that I've lost 20 lbs. because of the illness. I'm doing estrogen cream, along with the progesterone, and am to start supplementing pregnenolone (the mother of all hormones) soon.

A friend in the know tells me she thinks I have bartonella. I suspected this a few months ago because of the rib pain, but like every step in this journey I am at first in denial and then finally acceptance. It is now time to treat the bartonella. Dr. X. prescribes Cipro, but I am STILL battling candida so I can't do antibiotics again that will wreak havoc on my gut. I have upped the intake of pro-biotics and am still doing grapefruit seed extract. An herb, houttynia, is recommended to me to battle bartonella.  I try Byron White's A-BART, and do only 1 drop.  However, I react strongly two days later and stop taking it because it throws me in to a flare. 

I see an immunologist who guesses that I am having a reactivation of the Herpes Virus 6 (the virus that gives one chicken pox). I had a bad case of chicken pox when I was younger, so this makes sense. She tests me and it does come back positive but for the IgM, which indicates previous infections.  I really think the Bell's Palsy (7th cranial nerve inflammation), the Herpes Virus, hormones and tick disease are all playing off of each other, and it is just a domino effect of events.  My eyelids are inflamed sometimes and my eyes feel sticky, particularly before a flare.  I remember when I had bell's palsy my left eye felt that way.  I think either the tick borne disease, the herpes virus or both are now in the nerves in my neck and head and during a flare this is where the pain is.

I use zomig nasal spray (which is for migraines) during a flare.  It is now giving me a bad rebound headache that is almost worse then the initial headache I took it for.  Also, I have found that I can't let any of the spray run down my throat into my stomach.  It is toxic and if I let any get in my stomach it makes me almost vomit a couple of days later.  Need to find a neurologist to talk to about alternative therapies for these nerve headaches.

The journey continues. 

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