Hi Fifi,understand your journey. my first dx was lupus, then fibromyalgia. they treated me with everything for almost 30 on fibro--$$$ for them. then found the fibro and fatigue center who found other things like myco and chlamydia pn.,ebv, c

[Guest guest]

Hi Fifi,understand your journey.  my first dx was lupus, then fibromyalgia.  they treated me with everything for almost 30 on fibro--$$$ for them.  then found the fibro and fatigue center who found other things like myco and chlamydia pn.,ebv,  candida, cfs, dfid, treated with abx, no help.  went through more yrs of testing and $$$--for them.  finally sat on the couch for a couple yrs and found the lyme symptoms that over 30+ drs seemed to have missed. my one lyme test was negative, but no one put the symptoms together either. 

did find a llmd who could figure it out, lyme and cos.  thought my original lupus was lyme, and then got reinfected 10 yrs ago. 18 mo. on abx, but no help.  if you ever watch 'mystery diagnosis' on tv, many patients find their own diseases on the internet and then go find a dr that treats it.  so yes, dx our own illness seems to be common.

this group has been a life saver for me too.  they never seem to tire of the continual problems of getting better, then worse, then better.  it is a journey we all walk.  one thing that i really appreciate is the research everyone does, sharing info, and finding what is best.  it really helps to know that what you try others have had good luck with and is safe.

welcome to the group,barbara

 

Dear Lyme & Rifers,

I started getting sick 23 years ago. For the past 2 decades I've studied and tried everything I could find to heal the chronic fatigue they " diagnosed " me with 5 years into it. (At first they diagnosed me with rapidly progressing Lupus, and when I jokingly asked if I should bother studying for finals, the doctor wouldn't meet my eyes and wouldn't answer.)

It was bad enough being so sick, but the burden of having to research everything myself was overwhelming.

3 years ago I found someone skilled enough to diagnose the mold illness and mercury poisoning.

The results from whatever Lyme tests they'd run over the years were never conclusive, but I kept saying, " Look at my history. Look at my symptoms. Setting aside the mold and mercury, it's been screaming Lyme for years. " Persuaded them to at least run a CD57.

Started an herbal protocol for Lyme last spring and immediately responded. Feeling I'd reached a plateau, I found 's books and then this group. After everything I'd studied and tried all these years before it was narrowed to Lyme (coffee enemas, liver flushes of every stripe, colonics, supplements and protocols out the wazoo, all kinds of energy treatments, the year of eating macrobiotic-ugh), I thought I was pretty knowledgeable. Then, I met you guys and realize I don't know SQUAT! :-D

I am so grateful that I don't have to struggle alone with this, and that I can be the eager recipient of others' knowledge and trials.

For this I am very, very grateful.

Many thanks.

Fifi