I am pretty much the same as I was in May: mostly housebound. I can't shop. I can't cook. I can't clean out my closet.
I can't seem to go out more than once a week, if that. When I tried last week I had a major crash, which I am still experiencing, or maybe just starting to coming out of. Two days ago I was too tired to get out of bed or to talk the entire day. Jim came over and sat on the bed and I just tapped his hand with my finger to let him know I could hear him. Most of the time it is not that bad, but it happens. Yesterday I could talk a little more. Today I'm sitting up on the couch.
I took my last dose of GcMAF this morning. I've been taking it sublingually every 5-7 days. I ordered it from BGLI in The Netherlands. When they were no longer shipping to the US my parents flew to Amsterdam and got some for me because I wanted to stick with it at least 5 months. I got an email from them today saying they have resumed shipping to the US. But I don't think I'll be ordering any more.
On the other hand, here is a video I saw today posted by Dr. Enlander. His GcMAF trial, as I understand it, involves weekly injections of GcMAF not from BGLI but from a different source. This is just one patient, not sure of what is overall results are, if anyone does please let me know, but this one patient seems to have made a remarkable, and enviable, recovery.
This video makes me want to take the next flight to New York and see if Dr. Enlander is taking more patients for GcMAF. But I already have travel plans. Next week I'll be back in Asheville for Dr. Cheney's and Dr. Ruggerio's MAF 14 yogurt making clinic.
I'm not exactly looking forward to it. It's a long flight by myself, followed by a long drive. My dad is meeting me at the airport and taking the clinic with me. It's three days long. I don't know how I'm going to manage. My dad can go in my place but I'm the one who is going to have to come back home and teach it to Amy so she can make it for me.
I'd love to go to Florida while I'm back east and visit my best friend. She might be able to make the ten hour drive to Asheville to pick me up. Then I can visit for a few days or a week and fly back to LA. I'd like to check out St. Pete's white sand beaches, go to some restaurants, maybe the Dali museum, but chances are I will not be up for anything but sitting around the apartment.
I'm not expecting much from the yogurt. There's so many blood tests I have to take before I start it. The kits just arrived today, one of the kits. There's more to come. I have a good feeling they won't all be here before I leave. Cheney's office seems to be going through a lot of staff changes and in the meantime I haven't gotten a test result in months. I still don't know whether or not my nagalase has gone down, or the results of my last two calcitriol checks.
And...as I was writing this I just got an email about my VDR type: Bb Ff. It means I should be a good responder. Oh well.
I keep stressing myself out over these longshots. And I guess I haven't had enough yet.
There's a new documentary out called Voices from the Shadows. It's available for streaming on the Mill Valley Film Festival website until October 30th here. I highly recommend it. At first because of the music and the style, I was a worried it was going to be like a super long, maudlin YouTube video. But it's not. It's message is substantial and the stories are so important. It tackles what I think is the most important issue with this disease, the psychiatrists trying to hijack it.
All of the patients interviewed live in the UK. Six years ago, the first time I dropped all my classes midsemester, I had still never heard of CFS or ME. I was sleeping excessively and when I did get up and go to classes I was so tired I couldn't believe it. My only diagnosis was still depression. In an IM conversation, a friend in Europe said, "You've got to go to London, find out what's really wrong with you." I just laughed it off. It's not like I lived in a third world country. I'd been to the Cleveland Clinic, for gods sake. If they couldn't find what was wrong with me I don't know why anyone in London could.
If I actually had gone to London, I might have gotten an ME diagnosis. But who knows what kind of doctor I would have seen. One who believed it was biological, or one who believed it was psychosomatic?
The last part of the film is particularly disturbing. A woman with very severe ME is being committed to a mental hospital. (There they call it being "sectioned.") She is bedbound. Has day night reversal. She's sensitive to light. She'd only recently regained the ability to speak. I can barely imagine the constant pain she must have been in, just lying there, struggling to talk to defend herself, probably with her eyes closed. She pleads with the doctors and the policemen who have come to forcibly remove her, telling them she has ME, and she's afraid the treatment they want to give her will make her worse. But they don't listen.
Finally, I've been meaning to comment on the comments from the Wall Street Journal article by Amy Dockser Marcus last month. It's called "Wave of New Disabilities Swamps School Budgets" and the main disability she focuses on is CFS. It was featured on the front page I think. You need to have a subscription to read it and view the comments. My dad let me log in as him so I could read them, I heard they were pretty vicious.
The article focuses on one high schooler with CFS. Her story might have been mine, if I had been correctly diagnosed in high school. She keeps trying to stay in school, the school keeps trying to accommodate her, but she keeps getting worse, acquiring more accommodations.
Not surprisingly, for a lot of people this article was the first time they'd heard of Chronic Fatigue Syndrome. And, also not surprisingly, they all thought it was bullshit.
"I used to suffer from "chronic fatigue" while in high school! Fortunately it usually went away as soon as the final bell rang."
"So being lazy is now a medical condition? This is absurd and a huge waste of money."
I can't help but think that a lot of these commenters wouldn't have been so bold if the disease had a different name.
I've never liked the name Chronic Fatigue Syndrome because of the reactions I've gotten when I say I have it. "Oh I think I have that too" "Oh my mom has that but I think it's just depression" But I didn't know a better name for it, so I kind of got used to it. After all, it did describe at least part of what I was going through.
All these comments really opened my eyes. I'm not saying I have CFS anymore. Everyone who's been saying this name is absurd and needs to be changed, I am now completely on your side. Just tell me whose house to pitch a tent in front of.
Here is my own personal selection of comments which I call "I, who never went to medical school"
"I think I just got Taxpayer Fatigue Syndrome."
"Adolescents and teens? We can never discount "don't want to do it" syndrome."
"I have Sympathy Deficit Disorder."
"I remember a lot of kids that suffered from CFS when I was in high school back in the 1990s, but back then they were called "potheads" and "burnouts." I wonder what time this girl gets to bed at night."
"Made-up diseases: Chronic fatigue syndrome, learning disability, and marginal personality disorder.
Whatever happened to words like lazy, stupid, and jerk?""Call me heartless, but I'm not buying that "chronic fatigue syndrome" is a real disease, much less a disability. The people I know with "CFS" have been people I've known to be drama queens their entire lives, always taking the max. sick leave or simply not working and living off their spouse and making themselves the center of sympathetic attention whenever and wherever they could in order to never have to do any work nor think about anyone else."
"Chronic Fatigue Syndrome (CFS) & Attention Deficit Disorder (ADD) - Two made up diseases that I never heard of during my childhood! Then they were known by the more simpler terms "Always Lazy" and "Poor in Academics"..."
"I, who never went to a medical school will tell you, that fatigue syndrome is linked to improper diet and toxicity in the human body. How one can solve it, very simple; change diet, fast, exercise, especially jogging. There are good self help books, but one has to find them. More important it is free, and sets you on the path of self reliance."
"After reading the article,I had to go back and do a double-take to make sure I wasn't reading The Onion.
"There is no diagnostic or blood test, no known cause or cure. Patients are diagnosed based on a pattern of self-reported symptoms—which tend to flare and then subside."
What nonsense."
"Here's the bottom line from a physician of 21 years;
Chronic Fatigue syndrome is a bunch of cr@p. The people who "have it" will defend it till the end, to be validated as "sick human beings" and of course to get disability.
Fibromyalgia is a bunch of cr@p. But it is good for us doctors because it is codeword for "this is a crazy patient".
Fibromyalgia is a bunch of cr@p. But it is good for us doctors because it is codeword for "this is a crazy patient".
