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.

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.

Making the most out of it

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

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

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

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

Two weeks

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

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

Run, forest, run!

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

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

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

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

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

4.5 mg now

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

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

Fever

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

Whoa, huh

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

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

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

Looking at the improvements

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

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

Wiggling and walking

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

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

Doing well so far

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

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

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

An interesting night

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

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

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

Before starting

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

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

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

Starting today

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