| results in so far |
[May. 4th, 2006|02:16 pm] |
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50mg of 5HTP definitely knocks me out and helps me sleep through the night, but keeps me groggy through the next day. 3 days on: sleeping well, but groggy. 1 day off: sleeping poorly, not groggy. I ordered a bottle of 25mg capsules and will try those next. |
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| adventures in kefirland |
[May. 1st, 2006|06:15 pm] |
It's been a while since the kefir experiment started and I've had mixed results. Positive: I feel much better overall. I'm not constantly looking to lie down, I'm able to walk much longer distances without noticing. I'm more active and my muscles hurt less. Negative: it still hasn't solved the problem of me needing to eat in the middle of the night. If anything, my appetite has just soared. I've also had weird random mood changes.
When I had my plasma amino acids tested, I was quite low in tryptophan. One of the major things that tryptophan does in your body is get converted first to 5HTP (by trytophan-hydroxylase1 or 2), then to serotonin, a neurotransmitter. Among the many things serotonin does are: help you sleep, help you get and stay relaxed, and suppress appetite (alternately, express fullness). These are 3 things I'm particularly bad at. So at my doctors' recommendation, I was taking tryptophan at night to help me sleep. Originally, I was using trytophan and 5HTP interchangeably, but eventually I settled on tryptophan. But it didn't seem like it was doing much (I didn't notice a difference on nights I took it or didn't), so eventually I gave up.
Then, a few days ago, I noticed in the recently-announced CDC research that one of the genes they found correlated with CFS encodes for tryptophan-hydroxylase2. This is the enzyme used to create 5HTP most in the brain, according to some study I found on pubmed. Therefore, I wondered, what if my TH2 is not working right. Therefore, I get stressed easily, I don't sleep soundly, and eating doesn't make me full. So, I went out and bought some 5HTP and started using that. Jury is still out... |
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| kefir/whey/protein; more on website and rnase |
[Apr. 19th, 2006|11:54 am] |
I've been becoming more and more aware of my need for protein. Inordinately large amounts of protein, especially considering my sedentary lifestyle. When I wake up in the middle of the night hungry, I can eat anything I want and still feel a gnawing sensation; I have one large serving of protein (2 eggs, a cup of yogurt, etc.) and my stomach feels completely satisfied and I fall back asleep within 10 minutes. The other night, our house shopper (I live in a coop) came in late with the protein-rich foods and I could barely fall asleep.
I'm starting to think that it might be possible that the inordinate amounts of protein (including undenatured whey protein) I ate when I first came out here might be one of the missing elements that made me healthier. I stopped because the amino acid tests showed I had plenty of cysteine, an amino acid prevalent in whey protein, but not much else, which is usually the limiting factor in glutathione production. Back then, I had a lunch of two six-ounce containers of yogurt, or sometimes an entire 32-oz. bottle of kefir (56g protein in all). I ordered 12 of those 32-ozers through my house's bulk-buying system, so hopefully I'll never be without a copious supply of low-fat, high-protein foods.
I've been doing further work on my program to record and tell everyone about my health. The old one was written using bash and kdialog; the new one uses python and pyqt. You can see what it looks like here. Right now, it updates my e-mail signature, my website, and records how I was feeling in a spreadsheet. I'm going to add that it will run once a day, when I turn on my computer. It's kind of fun. I wish I had better records but it sometimes it's such a pain recording them.
I've read and re-read the RNAse-L book. It's clearly top-notch; whether the theory is what turns out to be the most important thing or not; they're the ones doing the best work right now. |
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| updates |
[Apr. 5th, 2006|06:07 pm] |
So, I haven't blogged in a really long time. I've got my first two comments from people I don't know in real life (hi!)!
Healthwise, though, after a months-long period of feeling relatively well, I've been in relative mediocrity for a few months.
In frustration, I've created a new system that tracks my health by asking me a question each morning. I'm going to expand it to add some more questions, so I have a log of how I've been feeling every day. My "current status" is attached as a signature to most e-mails I send, so I don't have to tell my friends how I'm doing all the time.
I've been doing reading about RNAse-l over at Phoenix. Fascinating stuff. |
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| jason died |
[Dec. 19th, 2005|12:04 pm] |
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At 23, and one of the best, most inquisitive, brightest people in the CFS patient and research communities. :( |
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| doctor's visit |
[Dec. 14th, 2005|06:19 pm] |
I went to the doctor today. He was excited about my progress, but wants to push me back further onto a normal sleep schedule (say, 12-9 or earlier). He thought doing so would help me avoid colds. He said what I had thought was obvious, that the fact that I get muscle pain after exercise indicates that not all of my problems stem from adrenal dysregulation, and that there's some sort of mitochondrial disfunction.
He recommended shifting my protein intake to be mostly (65-75%) in the beginning of the day (eggs, say), and eating more starches and carbohydrates for dinner--he said that they would help the tryptophan (which I should take slightly more of, starting earlier in the evening, along with a small dose of melatonin) cross the blood-brain barrier.
He also recommended exercise--light weight-lifting and walking early in the day. Ugh. The walking might be possible; I'll just be very careful. He said that if the exercise failed, he'd consider prescribing (er, suggesting, I guess) d-Ribose, like that CFS doctor from England does.
I suggested methylB12 and the whole methylation cycle thing I've been blogging about. He went back and looked at my amino acid levels again. Interestingly, he suggested that the fact that my methionine levels were normal, but my homocysteine levels were low was evidence in favor of a methylation problem. The idea is that if my methionine were low, then it'd only be natural that not much methionine is getting converted to homocysteine. He was willing to suggest it (Intra-Muscular, uf!), once a week for the next 3 weeks, then reevaluate it from there.
He mentioned that if it works, it wouldn't necessarily be because of methylation problems, it could also work in non-B12-deficient PWCs because of it's NO-scavenging properties. But we both agreed that that's only important to know if we're doing a research study; for me, it's just important to see whether or not it works. |
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| packages arriving |
[Nov. 26th, 2005|11:57 pm] |
While I was away for Thanksgiving, two packages arrived: the long-awaited video of Dr. Paul Cheney talking about CFS and diastolic cardiomyopathy, and the Pangborn/Baker book on effective treatments for autism.
First for Cheney: I wasn't impressed. He loses serious points for style: at one point, he made a negative remark about researchers who study patients but won't offer them treatment. What about clinicians who conduct studies, but never publish instead announcing findings on videotaped lectures in front of support groups? How can we test his theories if we don't know how he did? More style demerits for frequent hand-waving, mixing correlation with causation, citing studies that only seem tangentially related, etc.
That said, the core of his idea: low cardiac output mediates many of the symptoms PWCs feel, might have something to it. Lord knows I've always felt much better sitting than standing, sitting feet up than feet down, and lying down than sitting feet up. When I'm really really tired, all I want to do is get flatter and flatter, but you can't get much flatter than flat. I also have to sit up if I'm really going to think about something hard. By Cheney's theory this is because if I'm going to be thinking hard my cardiac demand is already up, so I also need to increase cardiac demand. The theory covers virtually every aspect of CFS--and life. Low cardiac output leads to everything from cold skin to leaky gut to a number of other things. All that might be true. But I still don't feel like he's given a convincing case that heart disfunction is either the first thing to go or should be the first to treat. I haven't watched all the way to the end; I'll stick it out a little while longer.
The autism book on the other hand seems superb. Based on it, I think the next intervention I try will be methylcobalamin (methylB12). I had been confused as to why they prescribed the same things (methylB12, DMG/TMG, folinic acid) for high homocysteine and low homocysteine, but now I think I understand: if you have high homocysteine but no blockade in your methylation cycle (or if the blockade is at the homocysteine itself), then you want to convert homocysteine to methionine so as to prevent heart damage. If you have low homocysteine and a blockade somewhere before it in the methylation cycle, then you also want to help convert homocysteine to methionine, but this time to encourage the SAH-homocysteine equilibrium to restore itself by converting more SAH to homocysteine, thus breaking a potential blockade in the cycle. It also makes a few suggestions I found interesting. A bunch of symptoms I used to get, but haven't gotten in a while may have been due to yeast: cracked lips, blepharitis (!), and some others. It suggests some things I've had since forever (bumps on my upper arm and some others) might be due to omega-3 fatty acid deficiency, so I'll crank the flax seed grinder up again. More discussion in time. |
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| "getting" the homocysteine thing. |
[Nov. 9th, 2005|03:16 pm] |
So, what Jill James says is happening in autism is the following: there are genetic (or other) problems with Adenosine Deaminase (ADA) that cause it to work inefficiently. ADA breaks down Adenosine, so it not functioning properly leads to a buildup of Adenosine. Adenosine binds to the SAH Hydrolase, the enzyme that breaks SAH down into Adenosine and Homocysteine. This causes a buildup of SAH, and a drop in the levels of the rest of the pieces of the methionine cycle: Homocysteine, Methionine, and SAM. This imbalance means that kids with autism have problems with the two things that the methylation cycle is good for: methylating other compounds and creating glutathione precursors.
Where this fits in with me: I'm confirmed to be low in homocysteine and methionine. So maybe this fits? Treatment implications would be, short of fixing the problem with ADA, supplementing the basic building blocks that the methylation cycle produces, like SAM or many methylated compounds (e.g. methylcobalamin (methylated B12), methylated folate, etc.). |
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| random homocysteine connections |
[Nov. 5th, 2005|06:43 pm] |
Homocysteine, which I am very low in, is generally higher in men than women, just like CFS, and roughly equal in boys and girls, just like CFS.
It is a heart-killer, through its inhibiting effect on the production of Nitric Oxide (NO), which dilates the arteries. High peroxynitrite levels (NO, combined with superoxide makes peroxynitrite) is Martin Pall's theory of how CFS comes about and why it's so hard to get rid of. These high nitric oxide levels could also explain why CFS patients have such bad hearts, yet generally don't get heart attacks.
Also, homocysteine levels vary through the day, peaking in the morning and evening (when I generally am more awake and aware) and nadir-ing in the afternoon. Perhaps they mediate the cortisol levels? |
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| methionine cycle |
[Nov. 3rd, 2005|02:23 pm] |
Thanks to those wonderful Autism researchers at DAN!, it's beginning to become clear that the methionine (methylation) cycle is vitally important to people with Autism, and most likely CFS. This chart demonstrates some of how the cycle works, starting with methionine, being combined with ATP and Magenesium to form SAM, which "methylates" tons of compounds in the body (including regulation of gene expression, serotonin to melatonin, phosphatidylserine, etc.) then with homocysteine as a pivot point which can either be converted back to methionine via Vitamin B6 or Magnesium or go on, via molybdenum to become glutathione, etc.
So where do I fit in here? My methionine is normal, slightly low. My blood homocysteine levels are quite low (which is usually good; high homocysteine levels are bad for your heart). My excreted molybdenum levels are low. Still trying to figure out what all this means... |
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| $600 plus lab fees |
[Oct. 26th, 2005|05:48 pm] |
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To get the tests done at the NYC doctors' office. Uf! |
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| RNA study |
[Oct. 21st, 2005|10:41 am] |
I floated to the top of the waiting list for this study on
CFS. It's a cool and exciting study, looking at gene expression in
mitochondria in people with CFS. When I signed up, I figured it would
be a cheap way to get an expensive test done that might help me learn
a lot about my personal disease profile (as well as an excuse to get
down to NYC). And it is that. For $45, I would have the RNA test
done.
But in order to participate I must have had at some point in my life
the following tests: spirometry (yes), EKG (not that I can remember),
and in the last 3 months, the following blood tests: Serology SMAC 16
, CBC complete blood count, T-cell count, Virology Serology for
viruses HHV6,HHV7,EBV,CMV, Mycoplasma antibodies, Lyme Disease; Eliza
and Western Blot, ANA, RA, none of which I've had. How much will this
all come to? I don't know, I can't get through to Dr. Enlander's
office right now.
Of course, I'd want some of these anyway. It would be pretty cool to
have such a complete work-up. |
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| disability |
[Oct. 17th, 2005|01:04 pm] |
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As the lawyer expected, I got turned down for Social Security (SSI? SSDI?). He encouraged me to continue the appeals process because if I don't get better and better, it'll be easier to start from the current application than to have to go through the whole thing again. Meanwhile, I might get a snippet of work from Seattle. What's up with this? When I'm in Seattle, people from MA offer me work. When I'm in MA, people from Seattle offer me work. |
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| single nucleotide polymorphisms |
[Oct. 11th, 2005|12:03 pm] |
Single nucleotide polymorphisms (SNPs) are very small mutations in genes that occur in a moderately large sector of the population. (That is, each SNP must occur in a moderately large sector to be considered a SNP; everybody has some SNPs.)
Given the apparent genetic connections in people with CFS (not least my own), SNPs and genetics in general seem like a good place to look in CFS. There has been some research: This Japanese study found that an SNP in serotonin *mumble* is more common than normal in people with CFS. Autism researchers are big on testing for SNPs regarding mercury detoxification that Rich thinks apply to CFS as well. But the tests cost $700 each and even if they find things, as of now, there's been no research done on how the SNPs themselves translate into treatment plans. I would basically be paying $700 to find out what I already know--there's some genetic vulnerability there.
But it's so tantalizing--if there were research into the effect of the SNPs, it would seem to be so exact to just find out which you have. |
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| sleep schedule |
[Oct. 5th, 2005|09:41 am] |
I fell asleep at 11 o'clock last night, again way earlier than I used to, and again I woke up early: 6AM today. I think that I have a problem with waking up early because going to sleep 3 hours earlier cuts out one meal from the day, and I wake up hungry. Waking up hungry at 6 after I've slept 4 hours and I'm bound to fall back asleep. Waking up at 6 after 7 hours sleep, and I'm not quite tired enough, but not quite well-rested enough. The key, then is to add another meal earlier in the day. |
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| Elavil and norepinephrine (noradrenaline) |
[Oct. 4th, 2005|09:37 pm] |
So far, I've been focusing on the shaky, but generally positive effects that the tricyclic antidepressants I've taken (elavil, then nortriptyline) have had on my serotonin levels. To review, tricyclic antidepressants are serotonin reuptake inhibitors, which means that, because my tryptophan levels and hence serotonin levels are low, at least the serotonin that I have bounces around between the synapses a little while longer, helping me sleep and concentrate. It's a lot shakier than simply raising my serotonin levels, because if I take too much, I can't get rid of the excess serotonin for a full day (and sometimes longer, I've noticed).
But tricyclic antidepressants are not selective serotonin reuptake inhibitors--in addition to inhibiting the reuptake of serotonin, they also inhibit the reuptake of other neurotransmitters--specifically, norepinephrine (noradrenaline). Is it possible that the years of taking tricyclics affected my nerve systems? I was clearly already having problems with day-night balance before I ever took elavil, but could it have done something to emphasize it? It could have come in many ways: adrenal system goes underactive while the elavil is working, because it responds to cues saying it already has enough? Adrenal system goes overactive because of the serotonin, in order to try to overcome it?
I don't know, I don't think anybody knows, but I wish I had understood how that little pill worked for years, so I could try to figure it out. |
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| Stages? |
[Oct. 4th, 2005|10:42 am] |
| [ | Tags | | | heart | ] |
| [ | mood |
| |  awake | ] |
I'm still eagerly anticipating my copy of the famous Cheney lecture in Dallas, but Rich reviewed it on an e-mail list, mentioning that Cheney believes there are multiple stages to CFS, and that the heart problems he thinks are happening (which he and many others think is caused by mitochondrial problems, probably due to high peroxynitrite cycles) don't show up until a later phase.
Now, I had always thought that I was able to keep on wrestling because I was in such good shape that even though it took something out of me, it took less than a normal exercise takes now. It could be that my heart muscle was just one of the last muscles affected, and that's why I was able to remain in such good physical conditioning for a while. |
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| sore throat |
[Oct. 3rd, 2005|10:01 am] |
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I've pretty regularly had a sore throat upon waking these days. This is a symptom I haven't had for years and years, since I first got sick. Again, I have that fleeting hope that this can be taken as an improvement, not a problem. Perhaps it means my immune system is working. |
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