I must say I'm not too computer savvy and don't get any responses. The first time I posted on the support site no one responded and I was devastated. In my neuro-fog I did lash back and am sorry but haven't returned to that site. Some people are so good talking on here but I've become such a recluse I guess even this is hard for me. Being a nurse, I've tried to do some of my own research, trying to find treatments for Lyme. I was diagnosed finally after 4 years with the Bowen 1:165. I've been in treatment for a year. I've found wonderful info on this forum. I guess without y'alls advice I would be in a nursing home by now. Georgia is very frustrating as I am told continously "its not an endemic area". Even by my Infectious Disease Dr. I've tried homeopathic, Dr. Zhangs, am currently doing Rife. I found a wonderful Dr. that took Dr. B's plan, and put me on Vanco 3 months. I relapsed and started back on it. The worse herx 4th week ever. Anyway, this vancos like chemo and I was at the end of my rope when I got my Dr. to talk with Dr. B. I had a bunch of tests today including the cd57 which I haven't run across before that he want'ed me to take. I start Biaxin and IM Bicillen if I can. (i had hives from pcn at 13 but says its important to try). Well, I did ok with rocephin. I've been warned I'm going to herx bad with this combo. I guess my question is I've herxed the past 2 weeks so bad, I mean I had a syncope episode and all. Well, is it going to be worse? I have a 9 year old son. Do I need to get someone to come in or what? My dr. told me not to work any overtime (which is ??? anyway) and concentrate on 3 days a week. I don't see how it could get any worse than what I've experienced of 1 year on antibodics but thought y'all could tell me what to expect. I don't look forward to IM injections (which my pharmacists said "literture reccommends hips, Nancy." I asked for antidepressants today for the first time, as I'm truly at the end of my rope. I'm truly amazed at the FORTITUDE some of you have! Well, I can't see past my tears, and as I told my Dr. today, I'm having blurred vision. Any suggestions on making the next 6 Months?
Posted by NP40 (Member # 6711) on :
I've often wondered how many people have died from complications of lyme ? Many, not even knowing what they have. It's seems amazing to say this, but we're lucky we know what we have, and treatment can be had.
Their must be tens of thousands, who never have, nor ever will know what's ailing them.
I had a friend who had lyme, that had forgotten how to turn off a sink. They thought he had alzheimer's. Someone decided to do a lyme test, and they found it. Today, you'd never know he was sick a day in his life.
Keep posting on the forum in your down times. There's always folks here that care, and will help.
God hasn't called us home yet, so why should we pave the road ?
Posted by patdetweiler (Member # 7030) on :
Fortitude, hell, you just keep going as best you can, no choice. If your Dr was able to consult with Dr B(in NY??)then you have hope. You're able to work? Count your blessings. Keep truckin-ask those you can for help. A newn antibiotic, Ketek, is helping me. Oh yeah, my Dr here in Pa told me we don't have Lyme around here. Pat
Posted by Trillian (Member # 6857) on :
Hi nursenanzy, I'm not experienced enough with this yet to give you advice on how long to expect the misery to last, just wanted to let you know that as a fellow Georgian I share your frustration at trying to find help in a non-endemic area.
It's easy to get overwhelmed when all you want is to be "normal."
Quick hint, most of us lymies have trouble reading more than 4-5 lines of type that aren't spaced. You'll typically get more responses the more concise you can be.
I know my eyes blur and it takes great effort to read anything, but especially when the text is all bunched together.
Remember to be thankful for the things that you have- like a diagnosis! I know for me that nothing compares to the misery of not knowing what was wrong.
It's hard to know what to expect, each person reacts differently to each treatment.
One thing that has helped me- my Dr had me type a list of my "primary" symptoms when I was at my worst. Now, looking over it, I realize how many symptoms are gone. Yes, the symptoms I have are more severe and horrible, but the list is much shorter. I find that encouraging.
Consider yourself hugged!
------------------ The only way to define your limits is by going beyond them. -- Arthur Clarke
Posted by duke77 (Member # 5051) on :
I too had went from doctor to doctor here in Georgia with them all saying "there is no Lyme in Georgia." Thank God for the internet and forums having to diagnosis yourself then seek an LLMD.
Not only is that statement false because I think Lyme has been reported in every state. They don't take into account that I used to live in Wisconsin, Rhode Island, and Charleston.