Hello to all

I became disabled 8 years ago and got a "CFS" diagnosis. Symptoms:

Dizzinesss, dysequilibrium
Tachycardia (orthostatic hypertension & Hypotension)
Post-exertional exhasution
Brain fog
Sinus blockage & infection Cold, dry air rhinitis)
"Fibromyalgia" pain
IBS/digestive problems
hypoglycemia
(more but I want to keep it short)

My doctor also sent me out and I had lots of tests- MRI, CT scan, doppler carotid artery, ENT caloric tests, allergy, etc... My doctor was really looking for MS, but when specific brain lesions aren't on MRI,

I got the "CFS, Fibro" and the drugs followed-

beta blockers (80 mg clobbered me. Now I think lower doses are recommended) i tapered off

Neurontin/Gabepentin-no help with pain (they exacerbate hypoglycemia
Tramadol- I took 2, became very ill and stopped immediately
Sleeping pills (needed initiallty, but after a few years tapered off
hydrocodeine- very small amounts,worked well but when I found out the histamine connection I stopped them

I read Phoenix rising, then found DINET. Last spring I read a post from a woman regarding the MCAS connection,I found mastcelldisorders  and I went ahead with:

Loratidine and Zantac 2X daily.

I was absolutely amazed at the improvement with spring allergy and I could stay up on my feet longer, brain fog lessened, improvement in every way generally, HOWEVER I still can have very bad days and I am not cured. I still tread carefully.

Diet wise, I eat no grains, and stay clear of processed, chemicalized food, and I must eat whole foods and I will study histamine food content. Because I am highly intolerant to chemicals, I avoid as much as possible and use natural soaps and products.

I hope to get a visit with Dr. Afrin early spring. His work is vital.

This site is a treasure of information.

Best to all,
Meg

Hi Megs,

Good to see you here. Our backgrounds are very similiar. I was dx with CFS and given drugs for my symptoms starting back in 1990.

If my digestion hadn't stopped in 2005, which lead me to learn about gluten, supplements, etc then I'd still be taking those drugs and getting worse.  

Like you, I'm looking forward to learning more about what this treatment can do for me. So far it's helping my fibro, pelvic and bladder pain and helping with my orthostatic intolerance thus allowing me to be upright longer. KOW.

Best wishes on your recovery ... Marcia

Good morning,

Hello to you Marcia- we sure have travelled a rough rocky road with this CFS/Fibro "diagnosis" and for me the drugs were clearly not working and caused set backs.

I just want to add another few symptom because it is significant- migraine with aura, face flushing in PM and near syncope.

Thanks, Joan, I really think it is important to research as much as possible and I have been reading past posts on this site and they are very insightful.  I have read Dr. Afrins lecture -I think from last year and he is such a powerful force in uncovering this important info. I spend a lot of time researching in general on healthy diet, chemical avoidance and keeping my home environment as eco friendly and safe as I can.

Lives are at stake here. Like you said, Marcia, I don't want to think that anyone should have to go through what I went through due to ignorance on the part of the medical system. The victory comes one person at a time, and with new knowledge daily, we at least have some hope for a functional life tomorrow.

Best,
Meg

Hi megs,

One patient at a time is slow but appears to be effective.
Just look at all the gf info and foods available now.

I've found health forums to be one of my best sources of info
over the last 7 years.   After seeing mc info on pheonix rising, dinet and the tryinglowoxalate board it finally sunk in with me.  I can be thick .. Lol ..

I used to get migraine auras and migraines too but not necessarily at the same time. The first one was scarey. After
I'd had a few and realzed they went away on their own I was ok.

I'm still getting hypoperfusion, fatigue (it's more of a heavy feeling / muscle weakness) and post exertional malaise.  I'm experimenting with b3 because it's supposed to help with circulation which I'm thinking would help the hypoperfusion.  Long story short, I took too much ( 500 mg twice in one day), got pem anyways and now I'm resting.

Good chatting with you. Marcia