I don't know if you want to hear from me or not. I'm a 74 yr. old female who has had ME for 35++ years (forget), have Syringomyelia (SM) and Arnold-Chiari Malformation. I've had surgery for both many years ago and this is some of my input.
Prior to the SM & ACM being discovered, I was also diagnosed and treated for a pituitary tumor. I was on bromocriptine for years and I really had no overt symptoms. I am always being tested for thyroid problems, but nothing ever seems to show up. That's fine...I'm not looking for other trouble.
I never had an eating disorder until I had Shingles which left me with anorexia. It took a long time to return to semi-good health b/c I had 3 attacks one after the other. This made 4 attacks in total, the first was when I was 30.
Since your research included people with eating disorders, isn't it possible their hair fell out b/c of it?
I've never had problems taking acetyl-choline.
No, I don't like milk of any kind (well, almond milk, but that's it). Eggs, no but I will eat a fried egg sandwich.
My protein level is probably lower than it should be, but I do have one really nutritious meal/day. I still don't eat much, but have gained weight due to meds b/c of multiple hospitalizations over the past 18 mos. or so.
I have severe allergies and immune problems that never end. I've had a mild heart attack & have 6 stents and high BP and cholesterol (don't know how!) My father died at age 40 of a myocardial infarct.
I take medication for anxiety/panic disorders and have depression if I'm not on medication.
May I ask what led you to the conclusion (?) that the liver is involved? I did read your research, but I'm getting a bit too old to be reading involved research. (And my mind won't let me remember everything.)
I'm from a large family. When I was a child one of my sisters had hepatitis. I can't give you more info because it was during childhood, my mother and just about all of my brothers and sisters have passed away. I did ask that sister if she knew what type of hepatitis it was, but she didn't. She was younger than I was at the time.
She also had an illness known as Stiff People Syndrome...nasty business.
I have autoimmune encephalitis which has impaired my thinking. Used to have a great memory, but even though I've tried very hard, I can't get it back to what it was before the encephalitis. This is a new Illness.
I was also diagnosed with epilepsy...and indeed I have had blackouts. I broke my wrist during one but didn't realize the cause until I spent time and effort trying to figure out everything that had occurred. I'll be on medication for the remainder of my life. Epilepsy is also a fairly new Illness.
About 2 years ago, I heard about a form of celiac disease that does not present in the normal manner. The new form destroys the neurological system and seems to begin late in life. Thus far, there have been approx. 4 known cases of this illness. Even though patients are treated with chemo drugs, all have died. You may find research at Columbia. No pain is associated with this illness, but it looks like ALS.
I'm giving you this information b/c not too many people of my age are involved and we're a hard group to reach. I thought you may find it of some interest...if not, that's fine.
Thanks for trying to help us. I'm glad that you recovered...enjoy it. Yours, Lenora.
I would very much like to help you.
I've just linked my latest paper above. It's written for a general audience and has actionable information in it.
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