Four years on LDN

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

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".

2nd LDN anniversary

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

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.

Six months and counting

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

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.

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

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

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

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

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.

Piracetam

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

Orkut and writing

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.

Something new that might work?

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. :->

Still alright

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.

Starting today

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