Monday, March 5, 2012

Five years

Just a heads up that it's now been five years since I started LDN. After it stopped my illness progression and I regained a lot of lost functionality my life took a turn for the better. In the last few years I've got married, moved abroad and had four books published, including a novel. One by one my dreams have come true.

I'm now being tested to see if I have Lyme disease (I've had some antibody tests in Finland, but nothing reliable), I should have the results next week. If the results are positive, I'll try to post here at some point. If I did turn out to have Lyme as well as CFS/ME, it would be good news for people with Lyme I guess, since usually it's thought LDN isn't as helpful for Lyme as it is for CFS/ME.

P.S. I was supposed to post this already last year, but please avoid the International Biomedical Center at Leende (places with the same name in other Dutch cities are fine). Yes, they do prescribe LDN if they feel like it, but they also lie to their patients and their lies really endangered my health in the spring of last year.

Saturday, March 5, 2011

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.

Friday, March 5, 2010

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".

Friday, May 1, 2009

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

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.

Thursday, March 5, 2009

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!

Monday, May 5, 2008

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

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.

Monday, November 12, 2007

Nothing special to report (but doing it anyway)

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.