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.

One-month conclusion

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

Exploring my own case

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.