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.
Monday, May 5, 2008
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.
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.
Thursday, September 13, 2007
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.
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.
Sunday, July 29, 2007
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.
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.
Sunday, July 8, 2007
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.
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.
Monday, June 25, 2007
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.
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.
Tuesday, June 5, 2007
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.)
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.)
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