Posted 8/19/2014 5:18 PM (GMT -5)
Hello everyone,
WOW, it has been a tough couple of weeks. I am stage 2 (if there is such a thing) and really fall between the cracks of just how much treatment I should be having. I have been to the ER three times (boy did I learn not to do that- they laughed at me and didn't help me-- two different facilities). I have been on doxy 200 mg twice a day now for a week and three days tomorrow. I took a week and a half of 100 mg twice a day before that (so I am at 3 weeks doxy total tomorrow).
I am a fairly early catch case, although i didn't start the Doxy until about 4 1/2 weeks after the bite. When I started the Doxy, I had vibrations all over, headaches, aches and weakness all over. Once I started the Doxy, three days later I had severe symptoms start. Do you think this was just herx or had I not caught it early enough and it disseminated? That will make all the difference in where I stand, I think, and I am terrified. I STILL haven't been to my LLMD for my first visit.
The new symptoms included numbness in hands and feet, pressure in left arm, pain in chest(ER visit number 1), in a fog, loss of words, numbness all over body when I slept, and each day I really would have new symptoms in new parts of my body. My face started to numb and I am a flutist (ER visit number 2), so my LLMD asked me to get my family doctor to double my medication to 200 mg twice a day to avoid Bell's. Since I did that, about three days later had a new series of intense symptoms- stiff neck, pain in neck, severe headache, blurred vision (ER visit number 3, sent in by my family doctor).
Well, I learned the hard and expensive way not to ever go to the ER. These are all tough symptoms, but nothing they could help me with. My last visit I had learned not to mention Lyme and they gave me a 5 minute CT scan, tried to do a painful spinal puncture (that failed and I finally refused), and sent me home with steroids for my eyes (which I hear is a big no no with Lyme). Finally, after not getting any treatment, I confessed to the doctor that I thought I had Lyme and then asked him about the pressure on the optic nerve and could this be causing my eye problems. The doctor left the room saying, "I am only listening to your case about Lyme because my brother in law is fighting with it. There is nothing we can do for you but give you treatment of steroids. But if you are having these symptoms, you are already a chronic case and you have a long, tough road ahead of you."
After that, however, my symptoms have gotten better and better and better each day. I keep a journal. Mostly my symptoms were worst at night. On my journal, literally every other day would rotate- good night, bad night, good night, bad night. Now they are all fairly good (not like before I got sick, but comparably).
All that I have now is this (3 weeks after starting doxy, 7 1/2 approx weeks after bite): Changed my diet to gluten, sugar, caffeine, alcohol and calcium-free, eating all whole foods. Weak and tired (although doing more now), internal vibration (annoying!!), twitching in muscles in legs, inability to take naps and I also wake up in the middle of the night and am unable to go back to sleep (even if I am calm). I still have fluid in the ears (clogged ears), and a little bit of ringing, slight headache sometimes, my eyes seem to be better, although worse when I get tired.
The long awaited day to see my LLMD for the first time is Friday (the day before my birthday, happy birthday to me).
I am wondering if I caught this early enough or does this sound like a disseminated case? Are all of those symptoms because I started Doxy and then upped my Doxy? I am feeling fairly well right now, but want to make sure that I get all of those little suckers out of my body. The internal vibration constantly reminds me that they are still in there. Or is that my nervous system damaged? In one week, I will be at the dreaded 4 week mark when the "science based" doctors say I should be completely over it. And I haven't even been test for it or co-infections yet! AAAH! I read a VERY disturbing thread on a website today and it was scary to hear their opinion on this and how strongly they feel about the longer treatment options. I don't want to stop the antibiotics until I know it is all gone!! I am feeling better, but what if I stop and it all comes back?
Having gone through so much in just a few weeks, I BELIEVE what all of the long term Lyme sufferers are saying. I have seen devastation in my body like no other and can't imagine what shape my body would be in if I had let it go even a few weeks longer. I am so sorry that it took getting the disease to hear and be aware of the devastation of this disease.
Above all else, I put my faith in Him. At the advice of someone on this site, I started thanking Him for healing me several times a day. That is really when I started to see improvement. Have faith, my dear fellow Lyme sufferers. Your faith will make you whole.
PS- I still haven't detoxed!! Can I do the detox without the hydrogen peroxide? I have the brush and the epsom salts, but haven't had the energy to get to the store. I do drink lemon water every day and try to eat foods that detox.