Update/Antidepressant rant

It's been three months since my last post.

Since then I went off the sublingual GcMAF and started MAF 314, which is the GcMAF yogurt.

I took my first dose on Halloween, I don't think I've missed a day. Since then I've felt better, I've felt worse, I've felt better, I've felt worse.

I thought for awhile my skin looked better but now I'm not so sure. I think my tongue looks healthier.

I think my digestion is better. Lately I've even tried eating chicken and fish again. I stopped eating meat regularly then totally a couple years ago because I didn't have enough energy to digest it. Every time I ate meat I'd end up feeling woozy, then quickly falling into a thick, dreamy sleep with my stomach churning, and I'd wake up suddenly two hours later.

I'm hoping if I can eat meat more often I might have a little more energy. I've been eating eggs for protein but I think this will be better.

*

While I was in Ohio for Christmas, I got called for jury duty in California. This happend a few years ago. I went to my old internist, Dr. M, who's office is just a 5 minute drive. He was happy to write my medical excuse even though I hadn't been to his office in a few years. Unfortunately when I asked him this time he said he didn't feel comfortable writing it since he hasn't seen me since. Which is understandable. But also so backward. I haven't been in to see him because it's not worth the effort. There hasn't been a cure for CFS in the last two years. He can't think I'm all better now?

So I called my "new internist", Dr. G. I switched to her because I felt Dr. M didn't really get CFS. On my first visit Dr. G made me feel like she really got it and I remember thinking she didn't say any of the typical wrong things. But on subsequent visits she did. And now going to her is worse than going to Dr. M, just a slightly longer drive.

Dr. M couldn't see me until next month, but Dr. G's office said it was a $25 charge for jury duty forms and I could come in anytime the next day. I considered driving myself but decided pretty quickly I shouldn't try. I thought about asking someone but before I could think too much Jim offered to drive me during his lunch break.

Jim never made it back to work. It took a long time to see the doctor.

She comes in with my chart. "So how are you doing? Are you back at USC?"

"No, I haven't been for years"

"So what are you doing are you working?"

"No"

"So...what are you doing?"

"Nothing"

It's not an easy thing to say, that you are doing nothing, but it's the truth. And I am angry, because even though I haven't seen her in a year, she has my chart, she recognized me in the waiting room, she knows I have CFS, but she still doesn't get how bad it is.

It reminds me of a scene Dorothy Wall wrote about. She went to see her doctor for something, a doctor she'd been to before. She was very sick with CFS. It was a huge effort for her to get to the appointment, to make it through the appointment. She tells the doctor about her symptoms and it seems like she is listening. And then when the appointment is over the doctor recommends some play she saw. "You should see it." And she says "Doctor, I have chronic fatigue syndrome, I don't go to plays."

I loved that line when I first read it. You tell her Dorothy! I like to imagine it made this big impact on the doctor. But I think if it had been me to say it the doctor would just roll her eyes behind my back and think "what a dramatic bitch."

Dr. G says "...and you were seeing some 'famous specialist?'"

I almost didn't know what she meant. But I told her yes, I was still seing Dr. Cheney and that lately I had tried GcMAF, and now was trying GcMAF in yogurt form. She didn't ask what GcMAF was, which was a relief.

She asked if I was on any antidepressants and I said no. I remembered she asked this last time. I told her I didn't have any interest in going on antidepressants.

"But you are so young, it's such a shame you...you should be out doing things..."

This is true, I think. It is a shame. It is a major shame. But please, please don't say it like that. It sounds like you are saying it is my fault. Like this is my choice. And I have tried so much. I've tried almost everything. I hate that she says this.

A neurologist specializing in sleep disorders said something similar to me once. First, she said she couldn't do a test on me because I was sleeping too much during the day and not enough at night and they didn't run the sleep clinic during the day. Then she said "Chronic fatigue is a syndrome, it's not a disease." She said something about how it can be corrected by things like changing your sleeping pattern and when she saw I was geting upset she said "You are a young girl. Pretty girl! Smart! Good Height. There is no need for this." Then I cried some more because I came all this way, she had been recommended so highly, and how could she help me if she thought that this fatigue was just some behavior pattern I'd adopted because I had low self esteem? Also I cried because I was sleep deprived and for me it was like the middle of the night.

Today I tried to sum up again for Dr. G how I have already tried six or seven antidepressants over five years and all that time I just got worse. Some of them made me sleep more. Some of them didn't make me sleep more. Some of them made me a little happier when I was awake. But none of them helped with my real problems, that I was tired all the time and needed to sleep 12-17 hours a day. And that I couldn't concentrate anymore. That I couldn't do math or write papers anymore. No antidepressant ever helped with that.

But she still said I should try the new SNRI's like Cymbalta. I said I just didn't see the point of going through that again. I'd never heard anything about Cymbalta helping with post-exertional malaise or anything.

Oddly enough, I looked up Cymbalta in Wikipedia tonight just before I wrote this and it said

"As of January 11, 2007, Eli Lilly is currently enrolling patients for double blind Phase II and Phase III trials of Cymbalta for the use of chronic fatigue syndrome (CFS) in conjunction with the University of Cincinnati.^[28] "

Funny coincidence. Maybe if I were living in Ohio I could be a part of that trial. Make myself useful. But then I'd probably have to go off the MAF 314 or something.

I also found out that Effexor, which I started my first year of college, is an SNRI. It got me through my first semester but one week into the second semester and I couldn't get out of bed. Definitely post-exertional malaise, in hindsight. That's when they took me off Effexor and put me on Adderall. "Just to keep me awake"

But my doctors kept telling me I should keep trying antidepressants until I found the right one. So I did. Before I started my first semester at USC I started Lexapro. (I think it was Lexapro) On Lexapro I was sleeping 17 hours a day. I was missing so much school it looked like I was going to have to drop out (and I did) but I was determined to listen to my doctor and stay on this medicine. My best friend, who was also my roommate then, was mad at me. When I told her I was on Lexapro she said she'd been on it too, it did the same thing to her, and I shouldn't waste time on it, I should just get off it. I should have listened to her, but then what would I tell my doctor? He was telling me to stay on it. He said sometimes it has side effects like this at first but they go away.

I think I stayed on it two or three months before I gave up. As soon as I got off it my sleeping went back to normal. (12 hours a day) But it was too late.

I took a few months off and then I went back on Prozac. I'd taken it for for six months when I was eighteen and I thought it was the one that had worked best. In retrospect, the fact that I felt better at this time probably had nothing to do with which drug I was on. I was already out of school and I stopped taking it before I started working. So I had a lot less stress and I could sleep as long as I needed, and I did. Also, I was younger and healthier and hadn't been sick as long.

When I tried Prozac again four years later it didn't do anything. Same when I combined it with Wellbutrin and Adderall and whatever they threw at me.

I haven't tried anymore since then. And I just don't have any interest.

Other things Dr. G said that annoyed me.

"When you go to the specialist, do you see that all the patients are women?"

"Well he only sees one patient a day so I've never seen..."

"Because most of the people with Chronic Fatigue Syndrome are young women your age."

I wish I had said "Why are you telling me this?" But instead I just said that a lot of the patients I see on the message board were men. I wish I hadn't said "message board" because as soon as I said that she cut me off. I didn't even mean message board like, normal internet message boards, I was actually referring to the Yahoo Group just for Cheney patients but I didn't make that clear.

So I never found out where she was going with that.

When trying to talk me into SNRI's she said "You have to run and jump and dance and..." and I cut her off and said "No, actually, exercise makes me worse" and Jim, who was setting next to me all this time, chimed in to agree.

"Well I just said jump and dance to mean you have to try everything."

I wanted to say "But I have tried everything"

Poor doctors, up late at night, pacing around their offices, thinking "What can you prescribe to the patient who's tried everything?"

And for the record I did try jumping, and dancing. They didn't help and probably made me worse.

In the end though she signed the form and I am excused from jury duty for one year. I asked if she could make it longer since there was no reason to expect I'd be better in a year. But she said that was as long as she could make it for unless the patient is over 80.

I wondered if I could find another local doctor before the next year so I wouldn't have to come back. One who understands and won't put me through this. But I think the chances are really, really small.

GcMAF update/VDR/Voices from the Shadows/New Name

I have been on GcMAF for 5 months now, and I'm sorry to report I've had no improvement.

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".

NPR FTW!

So much going on, I completely missed NPR's Morning Edition segment on Chronic Fatigue Syndrome Monday.

I heard about it over the weekend, and was a little worried it was going to be about what was going on in the UK with and ridiculous "Death Threats for Scientists" thing.

But actually it was pretty much all I could have hoped for; the news item I've been waiting for.

It's almost five minutes long, not just a blurb.

It talks about the day to day reality of being bedfast and housebound. The frustration with uninformed doctors. A soundbite from Anthony Komaroff.

Over the years, researchers have identified various brain, immune system and energy metabolism irregularities. Komaroff points to a study done a couple of years ago by the Centers for Disease Control and Prevention. It showed that the majority of doctors now recognize chronic fatigue syndrome as an illness. Today, an estimated 1 million Americans are thought to have it.

But lots of regular folks are still doubters, at least in the experience of Cynthia Johnson of Lake Oswego, Oregon. She says the disbelief makes the disease worse. Johnson is a breast cancer survivor but in October 2009, she was hit with a bad flu that hasn't gone away.

Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and they're very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.

And it ends:

The results of those two studies on whether there's an XMRV connection may be released at a meeting in Canada at the end of the month. Meanwhile, advocates for people with chronic fatigue syndrome are pushing for a name change, to make the syndrome sound like more than a description of someone who just needs a nap.

It's a rare thing with CFS stories, but I feel like these journalists actually really did their homework and were telling the real story. As best they could in five minutes.

Vendetta

I feel like I've been hearing a lot about Simon Wessely lately. But I've kept my distance, emotionally. ME in the UK, I don't think I've ever quite grasped what it's like there.

But I read a quote in Nassim Marie Jafrey's blog from Simon Wessely today, and it's gotten me pretty worked up.

“Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Seriously? And this man is ostensibly baffled that people would find this offensive. I followed a link to its source at the ME association website.

Here is his main argument:

“I think finally, fundamentally, it is that they [PWC's] cannot stomach the thought that this might be a, quote, ‘psychiatric disorder’. By which they mean — not what I mean — ‘it’s imaginary’, ‘it doesn’t exist’, they are ‘malingerers’.”

So what does he mean by "psychiatric disorder?

“Psychiatric disorders are disorders of the brain but expressed in a way that you can’t see them. I think that schizophrenia is a psychiatric disorder, Alzheimer’s is a psychiatric disorder, OCD [obsessive compulsive disorder] and autism are psychiatric disorders. Why is Alzheimer’s listed as a psychiatric disorder? Well, largely because it is treated by a psychiatrist.”

And this is where he loses me. What does he mean by, can't see them? They don't show up in MRI's? There's no blood test for them?

Yet?

Does he honestly believe that the causes of these diseases cannot and never will be seen? Never mind there is already significant evidence for a viral cause of schizophrenia.

What does he think CFS is? "Somatisation par excellence"? The delusion of fatigue? When there is so much scientific evidence against that?

Wessely thinks all his problems stem from the stigmatization of psychiatry. A stigmatization that shouldn't exist but sadly does. People with CFS turn their noses up at psychiatry. They naively demand the search for "biological" causes. People with CFS aren't crazy, but they are in far greater need of therapy than medicine. If they would just understand that mind/body - it's all the same thing! Thus follows, therapy/medicine - same thing!

So why even make a distinction between psychiatry and medicine, other than so psychiatrists can keep their jobs?

Actually he does see it that way:

“Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.”

What? OK, all you psychiatrists, congratulations! You're all neurologists now! All you in your private offices, seeing patients on couches, prescribing anti-depressants one after another in no particular order until you find "the one that works", call yourselves neurologists now! Publish a completely biased and unscientific study about how GET and CBT cure ME, and send it into the American Academy of Neurology for publication. Go try that!

I'm getting out of my depth now, but I have to say, the only way CFS/ME is a "metaphor for our times" is if you use it someway as a metaphor for our times in a novel or a movie. Here in the real world, it's just an illness. Maybe caused by a virus, maybe by something else, but whatever the cause, it can, and will be seen.

I think my feelings right now about psychiatry are best summed up by this great scene from Frasier:

It starts at 12:30 and is only a minute or so:



*Update - A good summary of Wessely's behavior in this letter from Malcolm Hooper

You know it's a good day when...

I am very lucky today because:

1) I drove myself to get my haircut. Made possibly because I finally decided to stop driving all the way across town and go to a salon down the street.

2) I was reading online about ways to cool your apartment without air conditioning. One of my problems is I can open my windows but I never get a breeze. Then I read that you can create a breeze through the "chimney effect" by opening the highest and lowest windows in the building.

My apartment is the second floor of a duplex. I open the front door, walk up some stairs, and my whole apartment is on the second floor. So my lowest window was actually the front door. I got up and went down the stairs, opened it, and came back up. My highest window is a skylight that was put in for roof access. Below it is a bookshelf/staircase with very narrow steps. I had to climb them, and push very hard to lift the window up, and climb back down.

What's great is not just that I was able to do it, but that I knew as I was sitting there reading that I would be able to do it. Most days I am so tired and my body feels so heavy; I would read it and think, "That's nice, I'll ask Jim to do it when he comes over." Most days I sit on the sofa and decide if I want to stand up and walk across the room to turn the fan on.

I'm tired now. If you asked me to get up and do it again, I would be able to do it, but I'd have to think about it. And I'd probably decide I'd have enough for the day and should just rest.

Which is what I'll do now. Hello Satie Pandora station...

3) I was able to write this.

10 weeks

I've just finished my 10th week on GcMAF. I'm afraid I don't have much to report. As of June 22 my Calitrol was at 47.7, up from 33 where it hovered before I started. It's a significant rise, and it means my body isn't just ignoring the GcMAF, so that's good. I had it retested a week ago. I guess I want it to stay elevated, but not get too high. That could be bad.

As of June 24th there's been virtually no drop in my Nagalase: it went from 2.2 to 2.0. I haven't had another test since. Maybe I should ask for one.

I started MTF last week. Some other patients reported feeling immediate changes when they put it on, (it's like a cream you rub into your arm) either jitteriness or more energy, but I don't feel anything.

It seems like this summer is progressing and my health is declining at the same rate as it would if I'd never started GcMAF or MTF.

My VDR phenotype results which are supposed to predict GcMAF response were finally sent to the lab, but it will be another month before I find out what they are. At this point I don't really care.

BGLI, my GcMAF source, has, for the time being, stopped shipping to the US and Canada. Even though I haven't felt any changes yet, and it's not too early, it's also not too late, and I didn't want to stop my treatment halfway. So as I write this my parents are in Amsterdam, a trip they took with the specific purpose of bringing back a three months supply of GcMAF for me from BGLI. I'm determined to do the whole six months.

Then there's the other GcMAF, the bovine kind made with yogurt. It's supposed to be helpful for digestion, which God knows I need help with. 20 or so Cheney patients are starting a trial of it sometime in the next two weeks. One of them read this blog and contacted me, so I'll be able to find out how he's doing. And supposedly after the trial this will be available for all patients to buy, I think.

It's not easy, but I am still determined to believe that any treatment could be the one that makes a difference.

Meanwhile I have not done much this summer. It would have been awesome if I could have gone with my parents to Amsterdam myself, but even though technically I'm sure I could survive the flight, the stress would do a big number on me, on my body, and it would just be a miserable experience. Anyway, I've already been to Amsterdam. It was kind of a side trip when my friend and I were traveling around Germany. I think it was supposed to be just two days, but we decided to stay another because I spent the entire second day asleep. It was the second time on a vacation where a friend, who normally was tolerant of my long sleeps, suddenly got angry at me for it. Because now we're in Amsterdam. "I understand if you want to sleep all day in Ohio, or sleep through college, but not when there's fun stuff to do." Both times it was a disturbing surprise to find out these friends thought I slept all the time because I had nothing better to do. Like I was making some kind of statement. Hadn't I made it clear this sleep thing was beyond my power and my understanding? Apparently not. Probably my pride got in the way.

Been watching a lot of movies. Almost seen all the AFI 100. Latch-hooked my way more than halfway through a welcome mat. Been making Spotify playlists. Most days now I am not able to read. So, I'll be keeping up my Audible and Netflix accounts. Wish I could do something more.

GcMAF/Nagalase/Calcitriol

I've been on GcMAF 30 days now and I'm starting to worry I might be a non-responder. I should probably wait at least another three weeks before I let myself get too concerned, but I can't really help it.

I have to say that it's been a good 30 days, relatively speaking. I still have good days and bad days, but the bad days haven't been as bad, and the good days have been a little better. It's been a little easier to fall asleep at night, and easier to get up in the morning. I really felt better. I didn't know my test results yet, if my Calcitriol levels were rising, indicating the GcMAF was active, or if I had the right VDR polymorphism.

Someone in Europe, I don't know if it was Kenny De Meirleir or BGLI or what, had said that only 5% of the population had the bad VDR type that didn't respond to GcMAF. Recently Dr. Cheney said that among his patients it was more like 50%. I won't know my VDR test results for at least another three weeks.

I haven't gotten the results in the mail yet, but I found out over the phone that my Calcitriol has not gone up, in fact it's gone down a little. But, when I took the test, I had only been on GcMAF for two weeks and had only had 3 doses of 20ng each. It won't be for another two weeks that I get up to the full 100ng dose. So I'm hoping that that has something to do with it.

Nagalase

Dr. Cheney suggested I do another nagalase test to see if that has at least gone down. The results from my first test came, and I've got it. My level was 2.2. The normal/healthy range is 0.32-0.95. So I am not normal or healthy. There isn't a lot on the internet about nagalase, but as far as I understand, it's only seen in cancer, HIV, and certain autoimmune diseases. I looked at a chart in one of Dr. Yamamoto's papers, and found that his HIV patients nagalase levels ranged from 3.06 to 5.58. The healthy control was .23. The goal of the GcMAF therapy is to get the nagalase down to zero.

As for XMRV, as far as I can tell, everyone in the retrovirology world seems to agree with John Coffin that XMRV is a recombinant virus, and a lab contaminant that does not infect humans. On the other hand, I got an email recently from a patient who saw Dr. Cheney in May and he still wanted her to get an XMRV test from VIP. I guess that's all I'm going to say about that, because retrovirology is pretty much impossible for me to understand. All I know is that something in me is making nagalase.

My next calcitriol test is in a little less than two weeks, but even by then I still won't have been up to full dose. Still, I'm hoping it shoots up.

I still have not experienced any GcMAF side effects, like the IRIS effects, flu-like symptoms that last anywhere from 2 days to two weeks.

If I'm not responding to GcMAF, and the good days I've had this month are just a coincidence, or a product of hope, there are two possibilities. One of course is I have the bad VDR mutation. If I don't though, I'm worried that my bad digestion could be the cause. And since gut health is so important to the immune system, maybe I'm screwed.

There might be a study conducted with Dr. Cheney's patients and a Dr. Ruggiero from Italy. He makes a product that combines GcMAF with a raw milk colostrum. It's supposed to be good for gut issues. Maybe if I am not responding to GcMAF this way I will be able to get in on that study, but I don't know, it's a pretty small one.

If GcMAF works for me, and it has for many with CFS, it could make such a difference in my life. Maybe I could go back to college. Maybe I could work. Maybe I could go grocery shopping and cook for myself again. I would love to take dance lessons with my boyfriend. But if things stay as they are, I have to spend most days sitting on the couch. Or if I am up to it, I can sit on someone else's couch, or on a couch at a party. Or even in the passenger seat of a car for a weekend roadtrip.

What I really need is to do some real clothes shopping. I'm sure that's the most energetically demanding chore of a person's life. Walking around to different stores, trying a bunch of different things on. That's the only way I know to maintain a decent wardrobe. I've been shopping a little, in spurts, one, maybe two stores at a time, with my mom or boyfriend to carry things for me. But I have to be done in a half hour, 45 minutes. There's more pressure. I don't always buy the right things. And then my weight is always going up and down so much, so something I bought two weeks ago won't fit today.

There's got to be some workaround for the shopping thing. Maybe my own private tailor who makes house calls?

I don't even go out that much, but I do go out sometimes. And when I do...I get very self conscious about wearing four year old clothes that don't fit. And also, it matters very much what I wear just sitting around the house. It has to be comfy, but I can't stay in my pajamas all day or I'll have nothing to change into when it's time for bed.