Wednesday, May 26, 2010

Night Owl/Stem Cells/Resilient Amoeba

5/26/2010 01:18am

Nocturnalism is only a problem if everyone else in the world is not nocturnal.

I meant to write this blog yesterday afternoon. I knew what I wanted to write - not at that exact moment- but I knew it was there in my head somewhere. I'd thought about it before, and I just needed to concentrate and find it and get it all out. I tried to sit up at the computer, but after two minutes or so I was lying on the couch and all I could think about was how warm the sun was. I tried again to write this morning but that didn't happen. Then I was really going to write this evening but I couldn't, I couldn't do anything. Now that it's 1 am and my head is clear and I'm able to write I can blame my failed attempts on one of two things: brain fog, or nocturnalism.

I think there was a time I thought nocturnalism was my whole problem. I thought it was just my unfortunate natural rhythm, and how would everyone else feel if they were supposed to sleep all day and work all night? Probably the way I did.

In college after I'd gotten enough studying done, I'd still stay up all night looking up things that interested me in LexisNexis, and one thing that interested me was nocturnalism, which sadly is not a really a word but should be. I remember reading an article by a woman who had been trying to write a book, and one day she realized the only way she'd ever get it done was to give into her natural tendency to be nocturnal. Once she "gave in", She went from barely writing a paragraph a day to writing pages and pages through the night. She woke up in time for dinner with her family, started writing when they went to bed, had breakfast with them, and went to bed again after they left for school. I wondered if that was the only way I would ever get anything done in my life. My noctural friend and I fantasized about a college where we could take classes from 5pm-5am.

Lately I've been laying the blame for my "day-night reversal" totally on the CFS. It's a typical symptom, it's a sign of impending adrenal collapse, etc. But the other day when I was repeating to my dad what my acupuncturist had promised me, about "naturally feeling more alert during the day and more like sleeping at night as I got better", when I was complaining about my nocturnal tendencies, Dad laughed and reminded me that the tendency never went away for him. We're both congenital night owls. Laying awake in bed has been a part of my life for as long as I can remember. I used to make up lots of games to try and fall asleep. I counted slowly in my head up to the thousands. I read hiding under the blankets with a flashlight. I thought of this today when a friend told me she was thinking of trying melatonin. (I've tried it, didn't do anything.) She said that two different families she babysat for gave it to their little boys. Kids today! Why can't they hide and read like we did back in my day, instead of bothering their parents with their awakeness so much that they are forced to drug them? ("Awakeness" also needs to be made a word.)

I definitely get the feeling I should be ashamed for my nocturnalism, that it's abnormal and immoral and unproductive. I feel guilty staying up to write this, despite the fact I couldn't sleep anyway no matter how hard I "tried". And what about "morning people"? Life was always so much kinder to them, particularly in middle school when the bus came at six am. I remember telling my friends how I kept getting to the bus stop later and later because it was getting harder and harder to wake up in the morning. One girl said, "Really? As soon as I open my eyes in the morning I want to get out of bed. I don't get it - wanting to stay in bed when you're not asleep anymore?" It was a critical moment for me, realizing that there were people like this out there, and that I hated them.

"Dr. Byron M. Hyde, a physician who studies CFS in Ottawa, Canada, has suggested that major sleep disturbance may be one of the very first symptoms of CFS to develop."*

That's my segue from the sleep problems part of this blog to the CFS part.

I've decided to put off the stem cell decision for awhile. I'm going to make an appointment to see Dr. Cheney again in October. Then it will have been one year of treatment with cell signaling factors (CSF's). My echo terrain map showed improvement in April, after six months, so maybe it will be close to normal in another six. And in the mean time maybe I will start feeling "functional improvement."

From Dr. Cheney's 2008 article:

Through the first six months of therapy, there was no significant improvement in functional measures (KPS) but some notable changes were seen in both echocardiography (drop in IVRT, p < 0.00006) and in impedance cardiography (rise in stroke volume, p < 0.00004). However, during the next six months, notable improvement was reported by some patients attributable, by most participants, to the heart/mesenchyme porcine extract.

There was a time when I thought that I might as well shoot myself up with placental stem cells, I'm already lathering up twice a day with CSF's from bison. But it's not the same thing. Dr. Cheney has really done a good job making the case for his confidence in the safety of the stem cell transfusions, but I'm still going to wait. My dad read the rest of Stem Cells for Dummies for me (I'll get to it soon) and he said "On a scale of +/-1-10 I went from + 5 in favor to -8 against using Stem Cells for CFS."

The main impression I got from talking to him is that it's still a highly experimental treatment and there's a lot that isn't known about stem cells. I'd already decided to put off my decision before he told me this though. I'm not ready. I need more information, and if there isn't any, I need to more time to mull over what I've got, though I'm well aware I shouldn't mull too long. My one year CSF anniversary seemed like a good deadline.

I think Dr. Cheney is going to make the human derived CSF's available soon. HPE- Human placental extract. They're from the same source as the stem cells you'd get in Panama, but it's not the cells themselves, just the signaling factors. Not sure what exactly that means, except that it probably won't work as well as stem cells, but I know at least one patient on the trial has made a huge improvment on the echo cardiogram, although without any "clinical improvement." But that might come in time.

In the words of CFSpatientadvocate:

In regards to this last item Dr. Cheney related his enthusiasm about a new gel that he has made from afterbirth material. Citing studies on hamsters, Cheney described a process where non-stem cell material is extracted from stem cells and injected back into the hamsters, curing them as if it were stem cells. Dr. Cheney has made a similar gel from human afterbirth that gets a very strong reaction on his Echo machine, much stronger than any existing CSF. He is very excited about this.

I do wonder if I am being too cautious, especially when I see other people I know a lot more willing and ready for stem cells than I am. But I just don't want to do it if I don't have to and I'm hoping, maybe naively that if I keep up with the CSF's, the human CSF's, acupuncture, herbs, rest, pilates (which is supposed to strengthen the immune system) the the right diet, and even the right attitude, I can get well without stem cells. I've also been a little more open minded about ARV's and I've been reading At this point though I think I'd still try stem cells before ARV's, but who knows.

If there is a real chance to be healthy again, I will not let it pass me by.

Some long awaited test results:

Mold: On the ERMI scale of 1 to 4, 1 being safe 4 being dangerous. My apartment got a 1.9. I'm in the moderate zone. So I don't think I'll be moving...

Amoeba: I tested "equivocal" twice by saliva. Then I did two weeks on the really strong antibiotic Alinia, which I am still recovering from, GI-wise. Guess what? My test for parasites went from equivocal to positive! How did that happen? For now the doctor is saying maybe we tested too soon and I should do the test again. He's sending me a kit. If it's not negative this time I don't think I'm going to do the antibiotic again. My digestion has actually been pretty decent.

Thyroid: Still don't know if I have tertiary thyroid syndrome. My blood test (TSH, T3, T4) results were in the normal range but it's the urine test results I am waiting for.

Most annoying symptom lately: Burning sensation in the back of my throat that is making me want to constantly drink massive amounts of water.

*Neenyah Ostrom, America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link to AIDS


  1. As a fellow nocturnalist (not a word, but should be), I agree with your frustrations. As discussed many times between us throughout the years, I cannot imagine what it would be like to be a morning person and to wake up comfortably before 1 p.m. Even waking up for work or school wasn't so bad, because no matter how few hours of sleep I'd gotten, I always thought being tired but up and productive was better than relying on my own internal schedule to miss out on most of the daylight hours. So, still to this day, I hear ya.

    My schedule has only gotten worse now that I'm unemployed and while some may call it laziness or whatever, it's the absolute worst feeling to know that you can not wake up at a "normal" hour when the rest of the world is functioning. It's never bothered me so much as now because since I'm unemployed and thus broke, I have all the time in the world to take advantage of free daytime activities in LA; hiking, picnicing, visiting Travel Town in Griffith Park, tanning, etc. But I much free time, and not enough things to do with it at 3 a.m.

    Grumble grumble.

  2. I am another nocturnalist, so you are definitely not alone!

    I hear you though - morning people get a wayyyy better deal.

    I adore it when you post a blog, as you say everything the way I wish I could :)

  3. Thank u so much for ur post. Ur nocturnalism, sleep reversal is something I too have suffered with for yrs, along with M.E/cfs for the last 6 yrs. It has been a source of confusion & mystery to myself & family for many years. I have even quoted you in my own blog which I have just started. Thank you for posting & making me realise I am not alone. X

  4. Alison, regarding stem cells--take a look at this news item:

  5. Hi, I'm a 17 year old girl living in Australia and I think I too suffer from nocturnalism. Ever since I hit puberty I have had trouble sleeping at night, not through lack of trying! I prefer and sleep better during the day. Of course because I am still in highschool this sleeping pattern is unsuitable and I have to try and maintain a regular sleeping pattern, something which I find extremely difficult. I manage to sleep for a few hours during the night, usually between midnight and 5o'clock then I wake up wide awake and raring to go until the sun starts to break and its usually about the time my alarm clock goes off that I find myself dozing off. I have tried so many things from reading to counting sheep to trying herbal remedies to resetting my body clock, none of it worked. I don't know what to do because my parents and family think I just have a messed up internal clock but I know that its more than that. I too hate morning people. I have a friend who believes she has insomnia but when she does wake up she is bright and chipper and here is me tired and grumpy because I have to be awake when I should be sleeping. I notice that I function better had night too, I am much more efficient and get more of my homework done at night. We have just started holidays and I know already that I will slip back into my nocturnal ways and when school starts I will have to suffer once again. I am so glad that there a other people out there that feel and sleep the way I prefer to. Maybe if I present this to my family they will start to believe me. Thank you for blogging this so people know that they are not alone.
    I hope everything works out for you =)

  6. Hi Alison, I just discovered your blog and wanted you to know I and my daughter both have CFIDS. My daughter got sick at age 10 her sleep like you describe got worse and worse so she was totally nocturnal--going to bed at 7am etc. Well we found her a treatment! The only one in the U.S. that I'm aware of at Columbia Medical School in New York. It doesn't cure CFIDS but she is now sleeping normal hours after years of not being able to sleep at night. If you're interested here is the link just wanted you to know

  7. Hi Alison, One more thing I meant to tell you is that the sleep treatment involves using a light box. No heavy drugs. We didn't believe it could work but it did and very quickly. She is still ill and we are in California like you so it was a big trip. I don't know if it is something you would be able to do, but it feels like a miracle to her and me that she can sleep normal hours now even though she is still sick. I wish you the best and thanks for your blog.