It would be great if you could list all the symptoms you used to have and that you are now cured of. Since there are a number of different symptom patterns, it will help the rest of us figure out if this treatment might work well with our particular symptom set.
Thanks for anything you can tell us.
My Lengthy Symptom List:
(In order of most to least distressing)
· General malaise – A constant feeling of not being well or ‘viral malaise’ (how a person feels when they come down with the flu).
· Post-exertional malaise – Extreme energy loss and heightening of symptoms upon light exertion. Exertion can be physical or mental. Loss of stamina. Constant need to recharge flat battery. Can take hours, days, weeks, months, or even years depending on the level of exertion. Pushing past symptom warnings causes lengthening of time that it takes to recover.
· Fatigue – Constant feelings of extreme exhaustion. Effects energy and strength. Wheelchair bound. Confined to the house.
· Muscle fatigue – Weakness. Effects every muscle including eye muscles.
· Cognitive disturbances –Concentration, focus, word recall, problem solving, and storing and processing and recalling new information are all affected.
· Brain fatigue – Made worse by physical or mental exertion. Can’t do anything requiring a continued period of concentration or physical activity. Includes reading, TV, talking, and other light activities. Results in brain fog (head is unclear, thick, heavy).
· Headaches – Vice like, pressure, full, heavy, tight, swollen feeling. Feels as though head will explode from overstimulation.
· Breathing issues – Breathlessness. Air hunger. Worsens with physical and mental activity.
· Sensitivity to noise, light and movement, touch, and other senses – Exhausts me.
· Racing thoughts
· Stomach problems – Food sensitivities. Stomach aches. Frequent diarrhoea. Constipation. Leaky gut syndrome. Low stomach acid.
· Postural hypotension (POTS) – Lightheaded, woozy, unavoidable need to lie down.
· Sleep – Unable to fall asleep for hours due to racing thoughts. Never feel sleepy at night. Wake constantly. Very light and unrefreshing sleep. Night sweats. Wake in night with severe nausea. Groggy upon waking, can last all day. Hypersomnia (difficult to wake in morning).
· Extreme thirst – Especially when overexerted.
· Hypoglycaemia – Need to eat foods high in protein and fat. Even following this diet feel weak and light headed between meals.
· Joint pain – In elbows and hips. Came on after many years.
· Erythromelalgia – Upon a change in temperature feet heat up, swell, turn red, burn, have sharp tingles. Freezing during the rest of the day.
· Heart palpitations.
· Low blood pressure.
· Mood changes – Annoyed and irritated when symptoms become severe.
· Sensitivity to chemicals.
· Body temperature imbalances – When cold cant warm up. When overexerted mentally or physically get overheated. Cold hands and feet.
· Ear popping when fatigued or too much noise.
· Swollen glands in neck.
I'd be very interested in how GcMAF (actually Goleic) affected your PEM. What was your PEM like, how did the improvements progress? Was is rapid or slow? Did your PEM threshold gradually increase or did you find you just went longer and longer without PEM. What was your PEM like -- how long to onset and recovery, what were the symptoms?
my PEM was always extreme but so extreme by the last 3 years that I was bedbound, had to lay completely still at all times, with absolutely no touch, or sound and very little sight. I wore ear protectors and earplugs and an eye mask and stayed in one room with no light. I couldnt speak except for about 5 words a day and couldnt be spoken to. My story is a bit confusing but basically the supplement took away all of my symptoms extremely quickly, some very severe ones like breathlessness, but it didnt take away the PEM until I started to ignore it and do things again. A doctor said my body had become so used to being ill that it hadnt recognised when it was able to function normally again. I had to wake it up. it took me about 6 months of doing this before I was fully well. It was obvious that the drugs had worked because I had tried soooooo many different treatments during the 8 years I had been ill up until that point and none of them had helped at all. this one within a week i was seeing huge changes. things were just disappearing like joint pain, the breathlessness that was so severe by that point that i could no longer manage to speak, my stomach issues that were so severe that I had just been in hospital and almost died from lack of nutrition, the list could go on and on. The improvement in these areas was rapid. Throughout my entire illness I had the highest levels of EBV test results that many doctors had ever seen. I was tested again after about 6 months on Goleic and the results were negative! I suppose my threshold gradually increased and i also went longer and longer without it. each month I could look back and think, 'I wouldnt have been able to do this last month'. My symptoms when I had it were mainly head, cognition related and energy related. I would have to lay down in a quiet room until they passed. I couldnt focus or concentrate on anything and my head would feel thick, swollen, heavy, pressure filled. my energy would go so flat. I couldnt take much interaction with others. My onset was sudden with what I thought was the flu. I was ill for 9 years and only got worse each year. I would relapse often.