LDN journal

Four years on LDN

2011-03-05T19:46:00.003+02:00

Four years today. How time flies, eh? The LDN for CFS/ME "scene" is quite different now than when I started. At the time I didn't know anyone else who was taking it and most CFS/ME patients had never heard of it. Now probably half of the people I know are taking it or at least have tried it, including dozens of Finns (I recently wrote this article, but after writing it there have been many new cases). My doctor is prescribing it for almost all of his CFS/ME patients now. I'll have to pressure him about writing a case series or at least a letter to a medical journal soon - trust me, I have tried that before and he always promises to do it some time.

I am now living in the Netherlands. I had some trouble finding a doctor to prescribe me more piracetam and LDN, but finally succeeded some time ago. Turns out the pharmacy even stocks LDN tablets! The downside is that they're very expensive - over 40 euros a month, which is more than twice the Finnish price. My insurance did not want to cover it (in Finland it was covered 42%, though of course not any longer, but it's still way cheaper). So it looks like I will still be getting my LDN from Finland, after all. Sigh.

After years on 4.5 mg LDN capsules, now that I had these 1.5 mg tablets I decided to try dosing them twice a day, as my doctor usually prescribes it these days, 1.5 mg in the morning and 3 mg in the evening. The first day I felt better than usual, but after that I have noticed no difference, so I'll be switching back to 4.5 mg at bedtime soon.

I am still struggling with hypopituitarism. In Finland I was written a referral to an endocrinologist, but never got to see one (because Finnish "health" "care" is wonderful like that). Here I got to see one, once, but she was clueless, so it was pretty much useless. My current hormonal supplements include taking hydrocortisone in four doses, 7-2-2-2 mg at about 8 AM, 3-4 PM, bedtime and 4-6 AM, and 75 mcg thyroxin (which has made very little difference, though I should probably be taking a little more) and 15 mg DHEA.

Anyway, I shouldn't be complaining, as the last year has been incredible. Besides my CFS/ME book being published in Finnish, I've signed three(!) book deals, one of which is a medical book for which I also got a grant and one is my first novel, also about chronic illness/disability, which will be out in a few weeks. I was a speaker at two LDN conferences, where I met some really wonderful people. I got married and moved to the country where I want to live. I am very grateful I can do this.

One interesting thing that happened lately is that my new doctor diagnosed me with whiplash (vertebrae C5 and C7, I think, were misaligned). I have never been in a car accident nor do I have any neck symptoms and only quite rarely headaches, which I have connected with my TMJ problems, but he said I may have had it since childhood. He realigned the vertebrae and I felt quite terrible for a week, but after that I have felt slightly better. No significant improvement though, but it was worth a try.

I am currently experimenting with some methylation boosting supplements, but it's difficult to judge the effects yet. So far it seems like 400 mcg megafolin makes me sleep too deep (had to discontinue it as couldn't afford that at the time), ~375 mg betaine/TMG makes me extremely sleepy during the day (-"-), 2 mg methyl-B12 makes me feel slightly better, but causes slight nausea and early morning sleeping problems.

Three years later

2010-03-05T16:02:00.003+02:00

Hard to believe I've been on LDN three years today. I can still remember the excitement of getting the prescription, and of course the excitement of getting better. I can't really remember what it was like being as sick as I was before starting LDN - I remember it on "fact-like basis", like "If I did that, the consequences were like this" but not really what it was like. And that's good. Hopefully I will never be that ill again.

In the last year I've deteriorated quite a bit due to my hypopituitarism getting a lot worse. I am likely severely deficient in all hormones now, but I can't get see an endocrinologist, get tested or have treatment for most of the deficiencies. Especially the growth hormone deficiency has been quite gruesome (I look like a creature from a horror movie these days), and the adrenal insufficiency has almost ended me up in the hospital about 100 times.

It's hard to know what's hypopituitarism and what's CFS/ME, but I probably wouldn't suffer much at all from CFS/ME if the hormonal deficiencies were fixed, especially since I started tyrosine and inosine last year. Luckily LDN still works well.

The manuscript of the second Finnish version of my CFS/ME/fibromyalgia treatment book has been finished and has finally found a publisher, a Finnish academic publisher, and will come out later this year. Possibly as early as May, but it might take until the autumn. I guess I should also mention that I will be speaking at the LDN conference in Scotland in April.

P.S. It makes me immensely sad (and kind of angry too) to see people with very well treatable illnesses saying they will never get better. That they don't just believe it, that they "know it".

The pill that retains my humanity (Blogging Against Disablism Day)

2009-05-01T12:07:00.002+02:00

The LDN blog is mostly inactive these days, having fulfilled its purpose, but I wanted to take part in the Blogging Against Disablism Day.

I hate ableism, but sometimes I wonder if I'm guilty of it myself. When I speak about low dose naltrexone, I always mention that without it I would most likely be in wheelchair, possibly even in a nursing home (or dead because I wouldn't be able to get into a nursing home and no one else would take care of me). LDN didn't change me from disabled to nondisabled, from sick to healthy, but it meant the difference between visible and invisible disability, between severe and moderate illness.

When I say this, I'm aware that it can reinforce the common belief that ending up in a wheelchair is the worst thing that can happen to a person, that it's the end of your life as you know it. I don't subscribe to this belief. Ending up in wheelchair wouldn't have ruined my life, but it would have severe restricted it - mostly because of the way the society treats people in wheelchairs, including four major areas: a) how strangers would treat me b) how friends and people I know would treat me c) the physical accessibility of my environment d) the financial support from the society. Every one of these factors would have been a disaster. It's well likely I wouldn't have even got a wheelchair, because in the country where I live my illness doesn't exist. I feel the social model of disability is very accurate, but it shouldn't be.

Ableism has made me feel isolated from the society. I only have an invisible illness myself, but having a good friend who's in wheelchair (for the same illness I have) and almost having ended up that way myself I have become painfully aware of how awfully the Finnish society treats people with visible disabilities. It's not really the staring that's the problem. People in wheelchairs are stalked, ridiculed, threatened and treated as invisible. I often imagine myself in wheelchair and how my friends and other people would accommodate me. The sad truth is that most of them couldn't.

Obviously, this is not just a problem in Finland, but it isn't so bad in some other countries. E.g. in the Netherlands wheelchair are more of a part of normal reality, as if you e.g. break your ankle, you're often given a wheelchair to move around in. It's nothing weird and doesn't signify "a life ruined forever". Wheelchairs are everywhere. This is one of the reasons (although definitely not the only one) I would like to move to the Netherlands and hopefully will. It's just difficult for people to understand. You're not in wheelchair, so why would you move somewhere else just because they are more accommodating of people in wheelchairs?

The reality of disablism is very black and white, us and them. We were visiting a family friend of my boyfriend's, who is a woman in her 50s or 60s. We were talking about her apartment and she mentioned the fact that these days all apartments must be built wheelchair-accessible. "But why? It's not like everyone is handicapped." The question makes sense to most able-bodied people if you don't think about it too much. Indeed, why? The disabled are just a small minority so why isn't it enough that we build, say, 25% of new apartments to be accessible? Aside from the fact that accessibility doesn't hurt anyone, this question entirely ignores the possibility that even if you are able-bodied, you might be visited by a person in a wheelchair, and that the person in a wheelchair might want to e.g. use your toilet. But most able-bodied people wouldn't even think about this. The distinction between "us" and "them" is so strong that you don't even think about the possibility of having a friend in wheelchair.

To get outside the wheelchair talk and the conditional "what ifs'" for a minute, I'll try to explain the current reality of my illness. Disabilities are not created equal, which everyone who's disabled, at least those disabled by chronic illness, already know. I have CFS/ME, a severe neurological illness similar to MS, but about 5-10 times more common. In my case it was also progressive before I started the low dose naltrexone, which halts the progression of MS in about 90-95% cases and luckily it has done the same for my illness. If I did have MS, it would have been very easy to get on disability. But because I have CFS/ME, which is this country is not considered to exist, even though the WHO has recognized it since 1969, it is impossible. I've been on a sick leave for years and I've never got a penny of the money I'm legally entitled to. I would most likely win if I sued the state, but it would also most likely kill me, and the court process would cost thousands of euros which I don't have.

I'm not angry about being ill or disabled. But I am very angry about not having any human rights in this country. I live in a country that's supposed to be "socialistic" (which is actually bullshit - I certainly wish it was). If it wasn't for the kindness of other people, I could have never afforded the doctor visits that got me my LDN prescription, and I would probably be too ill to take care of myself - with no one else to do it. If it wasn't for the kindness of other people, I could well be homeless at the moment. Luckily, I am not, and I'm very grateful for that. But the mere fact that you have to depend on other people's kindness for support, when you're not supposed to, when you're legally entitled to financial support that you can't get, is very dehumanizing. The mere threat of ending up homeless - which has been a part of my life since I was 16 - is dehumanizing, although obviously not as much as actually ending up homeless. I'm supposed to be a valid human being, equal to others, but this society certainly doesn't treat me as such.

Many people see me as a completely normal person. Many don't even know I'm ill, not because I keep it in secret in any way, but because it's not something I just blurt out "oh by the way, I'm a crip" or because they know that I'm ill, but because I look normal they conclude it doesn't really affect me. That's fine with me. But still, I can't shake the reality that while I'm often a part of "us", I'm also in many ways a part of "them". And if it wasn't for this compounded 4.5 mg capsule of naltrexone hydrochloride that I take every night before going to bed, I wouldn't be a part of the normal society - at least not in this country. The existence of that pill makes me immensely happy and grateful, but it should not be the only thing that makes me retain my status as a human.

2nd LDN anniversary

2009-03-05T12:33:00.001+02:00

No worries, I'm not dead yet - just not much reason to blog, except for today. I've been on LDN for two years now and still no illness progression. Unfortunately I've developed quite a few new symptoms during the time, four fairly serious one since last June alone, but my functionality is still quite similar. The worst new symptom is overt adrenal insufficiency, which means I have to take hydrocortisone most of the time and easily get hypoglycemic. I've had a few adrenal crises too, but luckily nothing requiring hospitalization. Haven't had any infections in the last year, except for a bout of probable bronchitis, which went away on its own.

Currently I'm taking the following meds and supplements:

LDN 4.5 mg
piracetam 2x1,200 mg *
baclofen 10-20 mg *
melatonin 1.5 mg
undenatured whey protein ~20 g
creatine ~2 g **
D-ribose ~10 g
glutamine ~3-6 g **
acetyl-L-carnitine ~750 mg
Q10 100 mg
R-lipoic acid 100 mg
magnesium 350 mg
vitamin D 50 mcg
vitamin C 2x500 mg
multivitamin
probiotic
Siberian ginseng (for cold prevention)
ashwagandha (for sleep) **

* currently not taking this as I've run out, hoping to get more really soon
** may ditch this soon as it doesn't seem to do anything or is redundant

and as needed:

hydrocortisone 2-10 mg
celecoxib 200 mg
bromelain & quercetin (for preventing post-exertional muscle pain)
licorice & rhodiola tea

I no longer have to take the nimodipine (which restored most of my cognitive function) and I still retain its benefits - isn't that grand?

I haven't been able to play badminton since the last time two years ago, except for a short outdoor stint in the summer. Hopefully more this summer. I did go swimming a few weeks ago, for the first time in years. To my surprise, I was still able to swim. I had assumed I couldn't do it due to the residual muscle weakness I have, but I could. And because of taking a lot of bromelain, I didn't even have post-exertional myalgia. Just some fatigue, not bad.

I'm also happy to report that someone from my Finnish CFS/ME forum who started LDN recently has experienced great improvement. She has had fairly severe CFS/ME to the point that she hasn't been able to do much of anything at all. Now she can take long walks without much repercussions, the oversensivity of her senses has significantly reduced and she can watch TV for the first time in ages. Her asthma (or fairly severe breathing problems which have been diagnosed as asthma) is much better and she is also experiencing some relief in the food allergies that CFS/ME has caused, which previously prevented her from eating almost all foods. I guess it's needless to say she's very happy!

Living happily ever after

2008-05-05T07:47:00.006+02:00

I'm sorry I have neglected this blog. I was supposed to write on my 1-year LDN anniversary, which was two months ago, but I simply haven't had the time. I was working on my CFS/ME/FM treatment book which is now finished, and after that I've worked on the website, the press campaign and other stuff. The book's website is located at http://www.brokenmarionettebook.com.

I've tried some new medications. Thyroxine didn't work and in fact caused loads of side effects. Maybe Armour would have worked better, or maybe I should have taken hydrocortisone at the same time (the morons refused to prescribe it, because "one thing at a time"). On the other hand, there has never been any evidence that I was hypothyroid. :-P

I've been taking undenatured whey since December in hopes that it will eradicate my active HHV-6A infection and any other chronic infections I may have. It seems to have slightly improved my overall condition. Also, it caused some "herx" like symptoms in the beginning and now, if I take licorice which is an antiviral and should work synergistically with the whey, I have the "herx" stuff again. So I'm hoping some microbes are actually being killed. Pentoxifylline didn't seem to do anything for my CFS/ME (probably because I'm already taking piracetam and LDN), but it did help the herx, because it downregulates inflammatory cytokines. But I'm afraid to take it any more, because it can actually worsen cytomegalovirus infections and I might have chronic CMV (and if it aids CMV it might aid HHV-6, too).

I also tried DL-phenylalanine, which is supposed to work as an adjunct to LDN, because it slows down the breakdown of endorphins. It also converts to dopamine to some extent. I didn't notice anything, but maybe I should have taken more than 500 mg a day. Luckily at least one thing I tried works very well for my cognitive dysfunction: nimodipine. It has almost eradicated my brainfog. If I could sleep 12 hours a day I would probably be 95% lucid. If I was religious I'd be singing "Hallelujah God and thanks for the new brain!" So far the medications I've chosen for myself have been great. My doctor was so impressed he prescribed nimodipine for a friend of mine, who seems to have benefited even more than I have.

My life is going incredibly well now, so well that I would have never thought it possible 1.5 years ago. At that time I was extremely disabled, could barely do anything, my brain didn't work and it looked like I would be in wheelchair soon. Now I have a good quality of life despite a variety of annoying symptoms. I moved together with my boyfriend of eight years in March. It wouldn't have happened if it wasn't for LDN, and I doubt my book would have been finished either.

Lately I've been thinking perhaps I might even get well some day, maybe not fully well but almost, considering I am closer to being well than being at my worst. On the other hand I am still getting new symptoms or old ones are showing new aspects, like my stomach problems, so it's not likely to happen any time soon. But even if I never get better than this, well, life can still be great. I just wish I would again find a job I could do.

P.S. I didn't get a single cold in the winter, even though my boyfriend had several "killer" ones. I haven't had any bacterial infections either, except for a possible throat infection lately (I don't know what it was, but it was a unilateral lump), which cleared up with oil of oregano and echinacea.

Nothing special to report (but doing it anyway)

2007-11-12T21:06:00.000+02:00

Still doing alright, but also still looking for further improvement. As a result of my sleep study I got a prescription for melatonin. It did knock me out (the med, not the prescription), but kept me awake at night. I tried adding inositol to the regime, and surprisingly it did work just as I was hoping for, keeping me asleep. So now I've all but solved 18 years of poor sleep (I still have nocturia, nightmares and stuff) with a very inexpensive combo that has no side effects. Sadly, it did not make much of a difference in how I feel or my functionality.

I had a kind of a burnout about 1.5 months(?) ago, a mild adrenal crisis. So I do have adrenal fatigue, something I've tried to deny for a long time. I treated it with licorice and was expecting to get a Rx for low dose hydrocortisone from my doctor, but instead he wanted to try his circulatory hypothesis and prescribed me etilefrine, a med which works pretty much the opposite from tamsulosine which I tried in the summer. He theorizes my hypocortisolism may be secondary to poor circulation. Sadly I haven't noticed anything from the med. Save for some supine tachycardia episodes I could as well be taking sugar pills.

I'm going to the infection clinic soon, after not being there since August last year. No, I'm not going voluntarily! They're useless, but I have to hang around the clueless public sector folks if I want to ever get on disability, though maybe I'm just in denial, because unless I sue the public insurer it will most likely never happen. It's interesting to see what happens there, at least they'll probably frown upon my medication. The chap who leads the unit thinks LDN is "a hoax or something that makes CFS worse", based on having never heard of it prior to getting asked about it.

I _might_ be offered IVIG which I haven't been given before. I really don't know if I should take it. Just a year ago I would have jumped at the opportunity, but now the idea of an expensive IV treatment that would require me to spend me an entire day in the hospital every three weeks, carries small but life-thratening risks and may well offer no benefit since I'm already on LDN does not seem necessarily worth it, unlike when I was really really sick and the chance of getting any medical treatment seemed hopeless.

Now I'm not sure if I can even benefit from further treatment, with the exception for hydrocortisone and perhaps pyridostigmine. Perhaps there's nothing more that can be done unless I get treated for the chronic viral infection I most likely have, and that won't be happening since it would cost like 5,000 euros a month.

Six months and counting

2007-09-13T11:33:00.000+02:00

Six months now (or little over a week ago, but anyway). Still no worsening in my condition. Normally I'd have deteriorated quite a bit in the span of six months. I've been sleeping quite poorly lately, but I'm trying to fix that. Had a sleep study a few days ago, slept a few hours at most. My doctor wants to send me for an even more complete sleep study to measure transcutaneous CO2, he has some theory related to that. It seems like the combination of taurine and valerian works well for my sleep, but I have to investigate it further. Could be just a coincidence.

I tried ranitidine (one of Goldstein's trusty meds) and it seemed to help a bit, but I've sworn off things that "may help a bit" unless they're extremely cheap, safe and stuff. And this stuff costs about 30 euros a month so it definitely isn't cheap. Still haven't got my nimodipine. I'm kind of hoping the public sector neuros would rewrite the Rx so that I'd get the med for free, but it's not very likely, as they don't want anyone to actually get better.

I've been gluten-free for a month now, since so many patients and doctors recommend it. Haven't noticed any changes, but I'll stick with it for two more weeks, as Sarah MyHill says it could take up to six weeks to notice a change. I had a UTI a few weeks ago, the first(?) infection I've had on LDN, which is quite impressive. Though since it's been three years since my last one, I strongly suspect it was somehow connected to the diet change (pH?).

I'm working on the English version of my book now and it's progressing at a decent rate. And I'm trying to get articles about LDN on some big illness-related websites (eg. ImmuneSupport and ButYouDon'tLookSick), but no replies yet.

Next trials:

* inositol
* pentoxifylline
* nimodipine?
* DMAE?
* pregnenolone?
* pyridostigmine?
* melatonin?

Speaking of trials, the HIV/AIDS trial is finally starting in Mali! This is the best news for HIV+ folks for like 20 years.

LDN saved my summer

2007-07-29T19:05:00.000+02:00

So, I was in the Netherlands for 11 days (my third time there already). It's weird how well it went. In the winter I was sure I couldn't make it. I discussed the possibility of what it would be like to go in a wheelchair with my friend a while back, and it would have been otherwise possible, except that I don't think my SO would have agreed to. But luckily I was able to handle it on my feet, thanks entirely to LDN (well, maybe with some credit to the lipoic acid as well). I was most worried that it would be too hot there as the heat has been killing me this summer - but it was in fact cooler than in Finland. No problems sleeping due to the heat (though I did have unrelated sleeping problems).

I had to drop a whole bunch of supplements for the duration of the trip. Normally I carry a big jar with all kinds of supplements mixed in the same bottle, but you can't really do that when flying, unless you want to appear like a drug dealer. So I took just Q10, R-LA, B12, vitamin C, magnesium fizzies and my prescription meds with me. It might not sound like much, but I had to drop at least Siberian ginseng, multivitamin, glucosamine, ALCAR, MSM, NAC, probiotics and some herbs I take occasionally like valerian and rhodiola. Some of them I will have to drop permanently soon, anyway.

The probiotics would have come in handy though, as my stomach was quite upset at first. But I bought some kombucha tea which seemed to help a lot (I wish I could get a culture of my own). And I didn't have much joint pain at all, despite the lack of glucosamine. Maybe (hopefully) I don't need it any more. Oh, and I forgot to mention I managed to get rid of ginkgo after over three years! Thanks probably to the combination of LDN, piracetam and B12. I have tried to drop it before but have had to go back very quickly. No I didn't notice anything.

2007-07-08T17:56:00.000+02:00

After a short rougher patch I've been doing quite decently (except that my stomach still hates me and my skin looks nasty). A few days this week I never really woke up, after that it's been ok. I think the tamsulosin (and perhaps the olive leaf extract I tried soon afterwards) fucked up my body for a while and it's now recovering.

Unfortunately my urinary frequency is still a lot higher than usual, and it's bad enough without any worsening. Having to go to the toilet 3-5 times a night is not much fun. Similar thing happened a few months ago after one tizanidine pill (it also works through the alpha receptors like tamsulosin), my urinary frequency worsened for 2-3 weeks. I guess my body is trying to tell me "don't fuck with the alpha receptors". :-P

My Finnish LDN site is now finished, see http://ldn.gehennom.org. If you can't understand Finnish you can't get much out of it, except that it has an extensive (yet far from conclusive) list of references about LDN and related research. Also, I uploaded an LDN documentary film I found on the LDN website on Google Video: http://video.google.com/videoplay?docid=8313092875696096715. Next week I'm finally going to send my book to the clinic of infectious diseases where I used to be treated, and ask that they consider using LDN and some other meds.

A woman with a myriad of different kinds of health problems (including cancer). I met on DA has improved a lot thanks to a combination of thyroid supplementation, allergen avoidance, LDN and large dose sublingual B12 (the latter two I suggested to her). I hope I can help many others to achieve such improvement.

Apparently Blogger isn't in the mood of letting me add a title today.

Better living through pharmacy

2007-06-25T14:03:00.000+02:00

I've been doing fairly well lately despite some intense stress from another person's health problems. Normally I think that this amount of stress would have rendered me bedbound, but now I'm fairly functional. My cognition is actually fairly alright these days, even though still impaired. So I guess it took some time for the piracetam (and perhaps LDN) to achieve its full nootropic effects - or perhaps they still aren't at their highest. Other symptoms have been alright as well, except for sleep, stomach pain and muscle/joint pain. The sleep problems I can attribute to stress and overly warm weather, but I'm not sure what's flaring up the rest.

I saw my doctor last week and we couldn't decide whether should get tamsulosin (a selective alpha blocker, meant for prostate hypertrophy) or nimodipine (a calcium channel blocker with some other neuropharmacological effects), so he prescribed me both (and celecoxib for my aches, since ibuprofen gives me such stomach churning these days that I feel like I'm playing Russian roulette every time I take it).

I've been taking tamsulosin in 0.4 mg depot capsules every other day since Wednesday last week, and I haven't been too impressed. It was prescribed to improve overall vigilance and to decrease the urinary frequency, but so far neither has been improved at all. My orthostatic hypotension hasn't worsened as I feared, but the med gives me rhinitis, which is annoying and interferes with my sleep. I also woke up with a massive headache last night, which I believe is related. So if I don't start seeing some results soon I'll probably discontinue it.

So, I could try the nimodipine, but the problem is that the smallest pack (100 tablets) costs 130 euros, and it isn't covered in our public insurance which covers wonderfully arbitrary 42% of almost all prescription medications - the tamsulosin cost me 5 euros for 30 capsules. The nimodipine might help me a lot, but I might not be able to tolerate it. I'll have to talk with my dad since he's the one who pays for my meds as I don't have the money myself.

I've finally tried valerian for sleep and it seems to work alright without any side effects. However, at about 15 euros a month it is quite pricey for me. But maybe if I do manage to drop the ginkgo I can start taking it. I'll have to discontinue MSM, NAC, ALC and glucosamine soon due to money issues (the MSM is fairly cheap, but it hasn't done much of anything). At least I'll need to take much fewer pills.

My doctor suggested that I go to another city for a 24h cortisol and growth hormone testing in September. 24h bloodletting doesn't sound like much fun, but it would be free of cost for me, and advancing scientific research is a big priority for me. LDN may increase cortisol levels, but I believe I'm probably still low on it (adrenal fatigue) and I suspect my GH is low too. If the latter turns out to be true we'll probably try pyridostigmine, a very cheap cholinesterase inhibitor that can increase GH secretion.

My Finnish LDN website is close to completion. I'm very happy with it, especially with the bunch of studies I've collected.

Summer heat

2007-06-05T00:57:00.000+02:00

Some three months now. Time sure passes quickly. I got the first copy of my book, the summer is coming and stuff. I seem to be more intolerant to heat than before, I don't think it's the LDN, but residue from the prednisone - as compensation I'm much less sensitive to cold, which used to be a major culprit for me. I'm dehydrated all the time, and drinking doesn't help much, as I'm probably deficient in antidiuretic hormone.

The LDN makes me tan a lot more easily without making me burn easier. Not surprising really, as beta endorphins stimulate melanocytes (which in layman language means tanning). Not that I'm brown or anything, but usually I tan very little and burn easily.

My exercise tolerance hasn't really improved from what it was two months ago and hills are a pain, but my persistence has paid off and I've managed to lose pretty much all the weight I gained while on the pred. I still have a little paunch, but I can fit in every single one of my clothes again. Apparently my face has got a lot thinner in the past month (sadly my face has always looked somewhat chubby, even though I've been underweight for well over a decade).

The MSM doesn't seem to do that much at 6 grams a day, eg. my congestion is still there. Though now that I started large dose N-acetylcysteine it's gone except for the mornings. The NAC seems to improve my muscle endurance, even though it doesn't affect the overall fatigue.

I've started to use rhodiola more often, now that I noticed that yes,
it actually works quite well - it seems to work better on the LDN than before. I also started propolis today, when I noticed I could get three month's worth for some six euros. I still want to try creatine and olive leaf extract, but I'm trying to promise myself no more stuff after that (except for some prescriptions which I might get soon).

I can't really remember when I last had noticeable urticaria. It's not like it has been weeks, but it's becoming less and less frequent.

(Sorry for any odd linebreaks, Blogger's acting up again.)

Brain and other tissues

2007-05-21T14:37:00.000+02:00

A few assorted things: I got my MRI results a few weeks ago. There were abnormalities typical of CFS, but they were of course written of as "normal". I assumed there would be such punctate changes, but it's still a bit freaky to get the results, that you have brain damage that shows up even in something as unspecific and crude as an MRI. So I have objective evidence of CFS having caused me both brain lesions and heart damage. Which is just disturbing to think about, damage to two of your most important organs. The brain lesions might also explain why I still have so much trouble with memory and concentration, even though LDN, piracetam and other things have helped them and reduced my cognitive fatigability quite a bit.

On the good news side, I've managed to lose a little weight. I've never been overweight by any stretch, but for a while I could hardly fit in any of my pants due to the prednisone-caused "paunch". I can mostly thank LDN for this, as without it I wouldn't have been able to exercise nearly as much as I've done recently. Actually I probably do too much of it as my muscles and joints are frequently sore afterwards, but at least I don't get CFS crashes. But the weather is already starting to get too hot for me already, at below 20C.

I don't know if my exercise tolerance will worsen now that I will most likely have to discontinue both acetyl-L-carnitine and glucosamine at least for a while due to money issues. But then again I'm taking too many supplements as it is. For a week now I've been trying some kind of a "brain stimulator" which is a little device with a few infrared leds. NASA has used them for healing injuries, but the guy who borrowed this device for me says it's good for brainfog. I'm not convinced but I got a free trial, so I could as well try. So far I don't think I've noticed anything.

My skin still isn't doing particularly well, but I'd say my hair and nails are definitely better than they were before LDN. Not that I had much problems with them before - CFS has made my hair brittle and it gets tangled very easily, but it has always looked fairly silky, smooth and shiny. But now I think it looks better, and my nails are stronger. Not that it's really relevant, just an observation. Shows how my body is in a better shape overall.

Two months

2007-05-05T18:12:00.000+02:00

Two months now, not much to add to my one-month update. I still can't walk uphill well at all and I still have quite a bit of cognitive issues despite the addition of piracetam, but many things I just couldn't have done before I can do now. I even did some laundry last week, one of the most killer activities. A few days ago I vacuumed my apartment though it required taking breaks. I haven't taken a single ibuprofen tablet in the last month. I've had two moderate headaches but magnesium has taken care of them. No lymphadenopathy for ages, and urticaria has been almost non-existent.

Muscle tension has bothered me quite a bit, I think mostly due to several nights of poor sleep, and carrying too much stuff. IBS has been nasty for a few days now and I've had some nausea, which has always been a very sporadic symptom for me. I haven't done very well the last two weeks, but it hasn't been about fatigue, but tiredness/"eye fatigue" and other things. Today I was feeling super tired to the point of feeling fluish, but two ginseng tablets alleviated it somewhat. I'm also having problems with temperature regulation, which doesn't feel like feverish chills and sweats, but as if the ambient temperature just changed even if it doesn't. I wish I didn't have so many different symptoms.

The other Finnish girl who was on LDN stopped it after a month or so because it didn't seem to be working for her. I do wish she'd have gone on a bit longer, but of course nothing works for everyone. But my Canadian friend is now sure that the LDN is working for him. He has results pretty similar to my own, eg. if he exercises some muscle group only the muscles get fatigued instead of getting general killer fatigue, which is just like my own experience. He says his doctor is considering trying it for other CFS patients, which would be awesome.

I'm going to see if I could get rid of the acetyl-L-carnitine (it's the most expensive supplement I'm taking) which I've reduced from 1 g to 500 mg a day, and gingko biloba, but I'm not sure if I can pull it off. I'm taking far too many things and I'd really like to try large-dose N-acetyl-cysteine for eg. my chronic congestion.

Purple, and fine

2007-04-23T20:47:00.000+02:00

Today hasn't been my best day. But I'm not let down because I know that tomorrow will most likely be better. And even today has been better than most days I had before LDN. The piracetam made me a bit lethargic and slightly irritable for the first days, but it's working quite well now. I'm hoping that in a few months my brain will be a bit more functional when the piracetam reaches its full efficacy.

I have something purple and wonderful cooking up on the stove (red cabbage stew, pretty much the same thing as the traditional Finnish cabbage casserole). It's one of my favorite foods, but I haven't been able to cook it for a few years now, because grating the cabbage was too exhausting. Now I can.

Even if I will never get better than this, I can deal with it. I'm still disabled, but my quality of life is way better - getting your health even 50% better can make a much bigger difference in quality of life. And life is very good now. Now I can make it better for other people, too. I'm determined to get my friend out of wheelchair, with LDN and/or something else. And another good friend of mine could use a prescription as well. I probably won't be posting much here any more, except for the LDN miracles I witness, and perhaps an update on myself every once in a while.

Piracetam

2007-04-18T13:23:00.000+02:00

I got a prescription for piracetam yesterday. It's a medication that I've wanted for several years now due to my cognitive problems, which haven't been relieved by LDN as much as I'd have wished, and luckily my doctor thought it was alright even though he had no prior knowledge about the drug.

I've taken four 1200 mg tablets yesterday and today as an "attack dose" and after that I'll probably take 2-3 tablets a day. Hard to judge about brainfog, but the circulation in my limbs feels better already.

So I'm taking a hefty number of pills and such at the moment, even after I dropped carnosine and astragalus, both of which I had been taking twice a day. Each amount is for the single pill, eg. I take 3 1.5 mg pills of LDN at once for a total of 4.5 mg a day.

piracetam 2-3x1 (1200 mg)
LDN 1x3 (1.5mg)
bromelain and quercetin 3x1 (125 mg/250 mg) (I will probably drop this as soon as it ends, it doesn't seem to work)
glucosamine 3x1 (500 mg)
sublingual B12 and folic acid 1x (1 mg/400 ug)
acetyl-L-carnitine 2x1 (500 mg)
R lipoic acid 1x (100 mg)
ubiquinone (coenzyme Q10) 1x (100 mg)
siberian ginseng 1x (1,000 mg)
probiotics 1x
gingko biloba 3x20 drops (hopefully the piracetam will let me drop this, I've been taking it for three years and it's the most inconvenient supplement, even though it works well)
oil of oregano 2x2 drops
magnesium citrate 1x (sometimes up to 3x1) (100 mg)
vitamin C 1x (500 mg)
a multi vitamin with essential minerals included 1x
vitamin D about 30 ug a day (not every day, but it averages to that amount)

That works out to a total of 22 pills/capsules and a bunch of drops. But it has been similar in the past, eg. last autumn when I was taking many things I currently do and eg. prednisone, omeprazole, vitamin B complex, glutamine, astragalus and a total of five pills of beta carotene a day (the latter was a short trial recommended by some doctor in eMedicine, didn't work), then I averaged 22 as well. :-P

Female stuff

2007-04-15T15:40:00.000+02:00

Those with XY chromosomes can skip this post.

I got my first period on LDN (yeah, I'm a modern woman and don't keep them every month) and I had been a bit wary, as some people with MS had said that LDN had made their periods heavier. But I assumed that it was probably a normalizing effect - a severely ill person would often have light or no periods, and anything that made them more healthy would affect that. I guess I might have been right. Definitely no change for the worse, perhaps even a slight change for the better (from a fairly normal base level).

(Damn Blogger being buggy again and inserting line breaks where there are none, can't get rid of them in either HTML mode or the normal text compose mode.)

Orkut and writing

2007-04-11T12:49:00.000+02:00

I've set up an LDN community on Orkut: http://www.orkut.com/Community.aspx?cmm=29921205. Note that the link doesn't work unless you're an Orkut member. And it's not worth it to join just for this. But in case anyone reading this is an Orkut member and interested in LDN... I've joined just about all Orkut communities for autoimmune illnesses, cancer and AIDS to spread the word.

On a sidenote, in the past 24 hours or so, I've written about four pages of a short story (the longest short story I've written since 1999 I think and the longest piece of fiction I've written since I finished my last novel in 2002 or 2003). It's strange to see it come out so easily.

I tried participating in "NaPoWriMo", a project where people try to write a poem a day for the whole of April. I failed miserably, I realized that I still have way too much cognitive dysfunction for that. And my brainfog doesn't really agree with writing articles or essays. But a certain kind of prose seems to be possible. It's thanks to LDN, but I also think due to the vitamin B12 lozenges. I haven't slept too well the past three nights, but the B12 seems to keep me more alert. Apparently it even helps many healthy people.

Now that my cognitive dysfunction is somewhat better it has helped me realize how bad it really was, and how bad it really is. I guess I've been somewhat in denial about it. I don't know how I got by at all, when my brainfog still seems to affect everyday living a lot.

My spleen or something nearby it seems to be slightly sore. I hope it's nothing of concern. My other lymph nodes are unusually un-sore, so I guess it's just a muscle cramp or something. Wildly theoretically it could be a broken rib, but I haven't done anything that could have broken a rib.

One-month conclusion

2007-04-04T19:15:00.000+02:00

I've now been taking LDN quite exactly for a month, depends on how you count. I made a kind of summary of perceived improvements so far. I hope I haven't forgotten anything, though most likely I have.

Main symptoms

fatigue: improved quite a bit
brainfog: somewhat improved, still very bothersome
cognitive fatigability: improved quite a bit
muscle endurance: improved quite a bit
muscle weakness: improved quite a bit
chronic urticaria: 80-90% better
tiredness: pretty much unchanged
fever: temperature is a bit higher, but the feeling of feverishness is reduced
urinary frequency: unchanged at first, recently worsened (I don't think it's due to LDN, it gets worse at times)
muscle aches/soreness: somewhat improved
sleep: not much different in either quality and quantity, a bit better which could also be due to the reduced stress as a result of better functionality
IBS: better, though I have some bloating and constipation at night due to the LDN
infections: none so far, either bacterial or viral

Other symptoms

headaches: have got two in the last month, quite normal
migraines: none, though either of the headaches could have been a migraine, hard to say as there was no aura and ibuprofen always helps my migraines
seborrhea: 20-30% better (but now pretty much gone to a new shampoo I started about a week ago)
orthostatic hypotension: hard to say, I hadn't had much of it recently
nausea: haven't had much of it during the treatment, but in the beginning I did get nauseated
sensitivity to smells and such: seems to be still be there
non-allergic food sensitivity: I haven't tested yet
congestion/post-nasal drip: unchanged
lymph node swelling: seems to be better, hard to say because it varies a lot
hair loss: hard to say, hadn't had much of it recently (usually I have a lot of it all the time)
exercise-induced asthma (not anything to do with CFS): improved quite a bit

Other parameters

weight: unchanged, or perhaps a bit decreased due to more activity and exercise (I don't have anything to weigh myself with) - on the other hand I'm hoping I might have regained a tiny bit of muscle mass which would outset the possible weight loss
mood: unchanged (good)
libido: unchanged (normal)
appetite: unchanged (normal), though I sometimes get a bit more hungry in the evening than usual
skin in the face: a bit worse at first, now pretty much the same as before
hair and nails: pretty much the same, hair is perhaps a bit less greasy

Something new that might work?

2007-04-02T18:17:00.000+02:00

I got my new supplements today, sublingual B12 (and folic acid) lozenges, quercetin & bromelain and glucosamine. I started the first two today as I concluded they'd probably have different effects so I'd know which one was helping (if they do). I was very tired and felt zombie-like because I had slept poorly, but after dissolving the lozenge in my mouth I started to feel much less tired and much more alert and lucid. It could be placebo, it could be a coincidence, but I haven't crashed like tends to happen with sleep deprivation. I'm really hoping it's for real.

An online friend of mine got an LDN prescription today because he was apparently inspired by my positive experience. I hope he won't be let down, I really wish that he will get better. Several other CFS people (and a few with autoimmune illnesses) I know are wanting to try it as well, but for many of them the biggest problem would be finding a doctor who's open to the idea.

I have my birthday tomorrow. I already got the present a few weeks ago though. :->

Exploring my own case

2007-03-30T10:51:00.000+02:00

I thought I should probably tell you a little more about myself, particularly my illness - I might be repeating myself in parts, but try to bear with it. CFS may well be a group of similar illnesses, or a single illnesses with different causes, however you want to put it. LDN might not help all of them. If your case is similar to mine it's probably likely that LDN would help you. Some cases of CFS seem more like chronic hypersomnia and somnolence and since LDN isn't a stimulant it probably won't help those people.

Apparently some cases of CFS are caused by bacteria, eg. Chlamydia pneumoniae, Coxiella burnetii, Borrelia burgdorferi (that's Lyme for you) and the different mycoplasma species. In some cases the bacteria is still lingering in the body and with proper antibiotic treatment (sometimes with other adjuvant medications) you can cure the CFS or at least make it a lot better. In other cases the bacteria may cause an immunologic reaction (similar to rheumatic fever and thus antibiotics are not of use, except for their anti-inflammatory properties. Someone I know was diagnosed as having CFS due to a past food poisoning due to campylobacter.

I don't think bacteria had anything to do with my own illness. In February 2000 I got a strange infection with no congestion or respiratory symptoms and a fever that went up and down for a week. I didn't have any appetite, I was incredibly weak and my muscles and lymph nodes hurt. It could have been influenza, but I've had the flu once and it felt quite different. Later I postulated it could have been Epstein-Barr virus (the one behind mononucleosis) acting in atypical way, but when I was tested in 2005 turns out I have no antibodies to EBV. It could have been cytomegalovirus (another herpesvirus which is connected to persistent fever) though, as I have antibodies to it.

The infection recurred in April 2000 and left me with a poor appetite and other sequelae for weeks. But I thought I did get better. On the 28th of August 2000 I got a fever and it never went away. Soon I started to get heart arrythmias, panic attacks and some other symptoms. I was fatigued too, but I blamed it on other things. Other symptoms (cognitive dysfunction, orthostatic hypotension, aches, migraines, hair loss, muscle weakness, urinary frequency, nausea, rashes, IBS, huge suspectibility to bacterial infections etc) appeared with time.

I am personally convinced that my illness is postviral, either caused by a "hit-and-run" bug sparking an immunological reaction, or due to a virus still wrecking havoc in my body. The infection doctors at the Helsinki university hospital never managed to find evidence of any infection running rampant in my body, though it's possible that I have an active CMV infection. However they don't treat CMV, only EBV (with Valtrex), so I was out of luck on that front. And since I didn't have IgG deficiencies, I didn't get intravenous immunoglobulin either. I believe it would have helped me.

I am pretty much a textbook case of CFS, except for a few things. CFS usually isn't progressive, but in my case it has been. I don't really have chronic pain and I've only had significant muscle weakness for less than two years. In the early years of my illness I was able to exercise a lot, it was cognitive activity that totally wore me out. Maybe I exercised too much and thus caused damage, but the illness was progressing even before that.

It's also a bit unusual to be helped so much by corticosteroids, but I know some other cases as well. I've never had a serious reaction to a medication or supplement, in general I never have problems with them. But unfortunately I've never been one of those CFSers who never catches any bugs, but one of those who catches every one of them and gets very ill. I've had so many bacterial infections in different parts of my body that I've lost count. I once spent 12 days in high fever due to parainfluenca. But now my supplement regime - and perhaps other things - have helped with this and nowadays I don't get colds very often. And if I do, it's often fairly mild, which was previously unheard of.

My bloodwork is pretty normal for a CFS patient. No gross abnormalities, but my ESR is very low, which is common in CFS (even though some people have a high ESR). My cell counts are usually normal, but besides that my immune system is similar to that of an AIDS patient, consistent with a Th1->Th2 shift: eg. low IgG3, high IgG4, somewhat high IgE. I've never had ANA, ANCA or any other autoantibodies detected in my bloodwork, but if you have those, it's probably likely that LDN would work for you since it works so well for autoimmune conditions. I believe that having clearly immune, autoimmune or allergic symptoms as a part of CFS is a good indicator that LDN would likely work for you, but that's merely my speculation based on the scientfic evidence.

Still alright

2007-03-24T21:22:00.000+02:00

Yeah, the badminton went well. I felt incredibly hot but didn't really get fatigued. The 45 minutes went incredibly quickly. Not much fatigue today, but some of my muscles feel rather sore and have got worse during the day despite multiple stretching sessions. When I woke up I felt a bit icky and concluded I was still dehydrated and lacking salt, so I munched on some salted nuts and crackers. I have a feeling I took too much magnesium citrate (500 mg I think) yesterday, and the vasodilation caused the hotness and flushing face and got my sodium levels out of balance. But no big harm done and I will keep that in mind in the future.

We made Ethiopian lentil soup today. It was rather good. Sadly I'm still as oversensitive to onion fumes as I used to be, which makes cooking with onion rather tricky even if you keep the window open and someone does the actual chopping.

Making the most out of it

2007-03-23T19:48:00.000+02:00

Life has been much more enjoyable when I can actually do things (like exercise and cooking)m don't have to worry about the repercussions and don't have to spend time just idling and having to stave off boredom. Well, today spent about two hours feeling like a zombie, as I decided to take a long, warm and relaxing bath which was apparently a bit too relaxing, as I could have easily fallen asleep then.

I've been eating more healthily than for ages, as now I can actually cook instead of eating frozen and canned stuff on most days and I don't put off eg. eating fruit and veg due to the energy needed to peel and slice it. I'm also getting into sprouting again, my broccoli sprouts should be just about ready.

One weird thing about the LDN is that I have a lot of strange dreams every night, but I just can't remember them. Normally I can almost always remember my dreams and some nights I could easily write half a page about them, but now it's different. Eg. last night I had a whole bunch of strange dreams and when I woke up in the middle of the night I tried to memorize it so that I'd still remember it in the morning. And in the morning I can only remember that one of my friends was in one of the dreams.

I'm leaving to play badminton soon. It's been years since I have even considered playing sports (except when I was on prednisone) and it's been a decade since I last played badminton. It might be excessive, but I'm confident that the most I'll get is a set of achy muscles. Let's see if I'm wrong.

Two weeks

2007-03-19T23:31:00.000+02:00

Not much to update here. I've been on LDN for two weeks now. Today I managed to overexert myself a little by doing a whole bunch of cleaning up and repotting and transplanting a total of six plants. I rested in bed for a bit, something I haven't done much for two weeks now. After I got up I decided to exercise and did stretching and muscle exercise for some 15 minutes (would have gone for a walk but it was very windy outside) and instead of getting more tired like things tend to be with CFS, the tiredness wore off.

I think my hair has got a bit less greasy than it usual (which is good of course), but that could be just my imagination. It looks very good anyway. My skin is still a little spotty, but I feel like it's starting to clean up now.

Run, forest, run!

2007-03-15T13:09:00.000+02:00

I got an email from my doctor saying that he had already prescribed LDN for another patient of his. Whoa! I really hope (s)he'll get good results, both for his/her own sake and the sake of encouraging future LDN prescriptions for others.

I've tried to stretch and walk as much as I can every day, even though the former feels a bit silly since there's "nothing to stretch" as my muscles aren't sore and crampy as usual. But I know it does good for circulation and joints at least. I try to rotate and stretch myself into every possible direction instead of just doing "classical" pre/post training stretches.

Yesterday I actually made several walks and during the last walk I tried to see if I can run short distances (like 100-200 m) as a form of interval training. To my surprise I could and I even enjoyed it. I would get out of breath in the end just like a normal person would, but it would dissipate in 5-10 minutes instead of taking an hour and it would not feel particularly awful. My muscles didn't complain at all. No bad after effects. I'll probably try to do more of that today.

Compare this to the day two weeks ago when I had my doctor's appointment. I ran like 50 m trying to catch a tram which was ahead of its schedule, I failed to catch it and I got some kind of an asthma attack (I have exercise-induced asthma, no meds) and I pretty much felt like dying, my muscles felt like shit for a long while afterwards and I could hardly walk from the tram stop to the doctor's office.

Some people think that I haven't exercised much because I'm lazy and unmotivated and don't like it, but that's total bullshit. I didn't like it much when I was still healthy, but I guess CFS learnt me a lesson (how lame). A few years ago I used to walk a lot, go dancing and do a well-planned combination of stretching and mild muscle workup up to 4x45 minutes a week. But then I got too sick to even stretch much and my ability to walk greatly diminished. I'd love to go bowling - if I could just lift the ball! - and if I suddenly got 100% healthy I'd probably get a gym card, at least if I could afford it. Off-topic rant ends now.

4.5 mg now

2007-03-13T11:27:00.000+02:00

The dosage change went smoothly. I did have very vivid and eventful dreams throughout the night, but slept quite alright, except for waking up a bit too early like happened when I started the LDN a week ago. I had a bit of hunger during the night, but it wasn't nowhere near as bad as the very first night and I didn't have to eat anything.

My stomach actually feels calmer and less bloated than before the dose change. I think that the herbal tea (which contains eg. peppermint, lemon balm and some other ingredients that might calm the stomach) is helping with that. Or maybe it's just going away by itself.

Fever

2007-03-12T17:48:00.000+02:00

I took my temp today and it was 37.6C (99.7F). I was quite surprised, as I haven't felt at all feverish since starting the LDN and was expecting something a bit lower. The actual temperature is really not unusual for me, as I've had a fever (37.2 to 37.8C) 24/7 for some 6.5 years now. Prednisone (and/or the astragalus which I started taking in August) seems to have permanently lowered it a bit and relieved a lot of the symptoms of the feverishness, but I'm still surprised that I can have a temperature of 37.6C and not feel very ill and be shivering in the bed under a blanket and wrapped in several layers of clothing, like I used to be a lot of the time.

Whoa, huh

2007-03-11T13:31:00.000+02:00

Yesterday was definitely a real test for LDN's efficacy. We were to first go to friends' engagement party (and even before that I worked on finishing my book and did a load of dishes from the previous night's baking session) and then to another (music) party right afterwards. I had some nasty stomach churning before the first party, but luckily it went away by the time we got there, as there was loads of good food and I ate a lot of it. My legs got quite sore as I spent most of the time either standing or walking around the house, so I was worried about the seocnd party. And usually socializing really wears me out.

It didn't help that we had to run to the bus when going from party A to party B, otherwise we would have had to wait for half an hour for the next bus. My legs felt awful. Then we had to queue for like 20 minutes at the door. But once inside I got to sit down and stretched my legs several times, which really helped. I had also grabbed a bunch of magnesium and some ALC while at my house between the parties and it could have helped too.

To my great surprise I realized that I could actually dance despite the severed legs, my legs didn't have the heavy as lead feeling that has been present for a long time and at times really hindered walking even the shortest distances. It wasn't wiggling this time, but real dancing, even if not as full-blown as some other people's. I could dance and it felt great, even if a bit sore. I think that if I hadn't exerted my legs before the party I could have danced for quite a long time. It was like a few years ago when I could still go partying at times despite the CFS. It was as if LDN had suddenly wiped off a few years of disease progression. And surprisingly I don't feel bad now. A bit tired because I didn't sleep enough, but not fatigued and my muscles don't hurt at all. I'm seriously impressed.

Looking at the improvements

2007-03-10T15:11:00.000+02:00

We made lentil pie last night. It took about three hours, but I wasn't at all exhausted. LDN really seems to be working, I don't think it can be just placebo. My seborrhea is at least 50% better than usual. I haven't applied hydrocortisone on it once since I started the LDN and still it hasn't really itched. The skin in my face seems slightly worse than before, but I'm hoping it's just the LDN "ridding the toxins out of my body" or something. Heh. The urticaria is still there, but much milder than usual.

I'm still fairly congested, I'd have expected LDN to help that since it's definitely an immune system symptom. But we'll see if it disappears later on. I can't remember feeling feverish at all the whole week. The cognitive dysfunction hasn't improved much, which is a bit discouraging, but maybe it will pick up. If not, piracetam should take care of it later. One very minor side effect seems to be that I get nauseated a little more easily, eg. I may start feeling very slightly nauseous when in a bus. Not that bad really.

Wiggling and walking

2007-03-08T21:04:00.000+02:00

Ok, I still haven't got the article written because I suck, but I did make pancakes yesterday. Actually I was dancing in the kitchen while frying them (of course dancing doesn't mean jumping up and down wildly, but more like wiggling randomly to the music and looking like a moron). The heat was uncomfortable but didn't crash me. Today I made quite a long food shopping trip - it lasted for 2.5 hours. In the end my legs were toasted, but overall I'm quite alright.

The side effects of LDN had mostly abated last night. No problems falling asleep, no abnormal dreams or anything. Even the nasty hunger had almost vanished. Just the constipation/bloating was there, though not as bad as before.

Doing well so far

2007-03-07T12:43:00.000+02:00

Yesterday was a very good day overall. I did a lot of stuff, eg. planting and doing an interview of a friend with severe CFS. I couldn't get my dictaphone working properly as I had forgotten how it works, so I did the interview with pen and paper. Normally both of these things would have worn me out severely, as does everything where I have to use my hands a lot and "heavily". My muscles did get weak and sore but they seemed to regenerate fairly quickly and it the exertion didn't translate to overall fatigue. In fact I hardly had any fatigue during the day, only some tiredness. I did get some urticaria in the evening, but it was mild.

Also luckily the side effects (which weren't too awful to begin with) considerably lessened the second night. I fell asleep without much trouble, no tremors at all. I did get the hunger pangs when going to bed (despite having prepared with a large meal almost immediately before) but they weren't as bad as the night before. No bothersome dreams. I went to the toilet two times during the night (I think) which is a normal amount. I've had constipation and bloating which seems to have been caused by the LDN (at least exogenous opioids affect motility and transport time etc, so I guess endogenous ones do the same).

I woke up a bit earlier than I'd have normally and do feel a little tired, but not really fatigued. My muscles feel better than usual. I feel like my skin is a bit smoother than usual, but that could be just my imagination. I think that today I'm going to work on my book, write the interview article or most of it - and make pancakes! If this really is just placebo or something I should be able to find out. I think I'm going to stick with 3.0 mg for the rest of the week and then switch to 4.5.

An interesting night

2007-03-06T09:49:00.000+02:00

...but not too bad. I took the first two 1.5 mg naltrexone capsules (I decided to start with 3.0 mg and soon ramp up to 4.5) at 11:45 PM or so. I went to bed at 1 and soon after I was hungry, even though I had eaten rye bread, an apple and an egg less than a hour before. I felt slightly anxious and my legs had this weird tremor/fasciculation as if they had been shivering, but they weren't. It wasn't very bothersome and I don't think that was restless legs, as I didn't feel inclined to move my legs. I was still awake at 2, but I think I fell asleep soon afterwards. It's not at all unusual that it takes me over an hour to fall asleep.

I woke up at 6 and for some reason I first thought I hadn't slept at all. Then I remembered a bunch of dreams. They were a bit disturbing and weird, but I actually had worse ones the night before. I felt a tiny bit achy as well. The real problem was that I had a killer hunger that prevented me from falling asleep. I had a piece of oat crispbread and that only helped a bit, it was as if my stomach was expecting a full blown meal in the middle of the night.

I fell asleep again anyway and woke up at 8:45 and couldn't fall asleep any more, about two hours before I'd normally get up. I feel a bit sleep deprived but other than that I actually feel good. IBS is there and my seborrhea is itching a bit, but can't feel any fatigue. We'll see whether that changes when I actually do something that should wear me out.

Before starting

2007-03-05T21:21:00.000+02:00

Today has been a fairly standard day. Just reporting for later comparison. I slept quite decently last night, which is somewhat of a rarity. Plenty of vivid but fragmented dreams. Had to go to the toilet twice during the night (I think). Getting up was a real drag as always.

Fatigue and tireness levels have been moderate, though they rose quite a bit when I sowed some seeds - working with my hands seems to greatly induce fatigue for me. Luckily typing doesn't do that. Muscle weakness and stiffness is at a moderate level as well. Cognitive dysfunction has been fairly alright, though I did forget something but I already forgot what I forgot. Go figure. I'm having trouble concentrating.

No urticaria today yet, also quite rare. IBS has been worse than usual, could be because I'm nervous about the upcoming treatment. Fever hasn't been that bad, except for a bit of shivering at times. No aches, headache or nausea. No neurological symptoms. Skin is quite dry with sandpaper like spots in some parts of my body, but my face is more spotty than a few weeks ago. Armpit lymph nodes are sore as usual, but only if I touch them.

Starting today

2007-03-05T11:01:00.000+02:00

So, today I will be starting my experiment with LDN, low dose naltrexone, an immunomodulatory drug that has been mostly used to treat MS and other autoimmune illnesses, but many people have had success with using it for CFS/ME as well. I might be the only person in Finland taking LDN for something other than MS, and it's very rare even for people with MS, but the pharmacy had compounded LDN before. I was really lucky to find a great doctor who admitted that he actually likes experimenting with new things. If LDN doesn't work or doesn't work much, I'll probably be doing piracetam, pyridostigmine and calcium channel blockers next, and will try pentoxifylline (OTC) as well.

Previously I've tried eg. numerous OTC alternatives (including OTC meds, herbs, amino acids, vitamins and such) and prednisone, which helped me a lot for a short while (I was essentially in remission, but then it ceased working, and the withdrawal was nasty and took eight months (ouch). It did seem to provide permanent relief from my chronic fever, which is still there but not as bothersome as it used to be. I've also been prescribed beta blockers to use as needed, but I no longer need them (see below).

Currently I am taking the following things:

acetyl-L-carnitine 2x500 mg a day (for cognition and muscle function mostly)
R lipoic acid 100 mg a day (for muscles)
ubiquinone (coenzyme Q10) (doesn't seem to help my fatigue, but has almost entirely got rid of my nasty heart problems which are due to mitral valve prolapse and perhaps some other heart damage I have from CFS)
L-carnosine 2x200 mg a day (I'll probably discontinue this soon, as it doesn't seem to do anything )
siberian ginseng 1,000 mg a day (mostly for cold prevention, and I know both scientifically and anecdotally that it works)
astragalus 2 tablets a day (I'll probably discontinue it soon since I'm not sure it does anything)
probiotics (helps my IBS a great deal)
gingko biloba (significant relief for my severe cognitive dysfunction)
oil of oregano (as I'm very prone to bacterial infections and this is incredibly helpful for them)
vitamin C 500 mg a day
a multi vitamin with essential minerals included
vitamin D about 30 ug a day