Linda and Oral Alpha Interferon
My name is Linda. I'm 40 years old and have had CFS and FMS since 1983, although I wasn't diagnosed until 1996. Since July '98 I have been taking an experimental drug called low-dose oral alpha interferon, and have experienced quite a significant degree of recovery.
My symptoms have been fever, pain, irritable bowel (IBS), insomnia (trouble falling asleep, trouble staying asleep), cognitive dysfunction and the weakness and dizziness that come from neurally mediated hypotension. Everything but the NMH has dramatically improved since I've been taking oral interferon.
I started taking oral interferon alpha on July 23, 1998. That was a Thursday. At that time I was taking five or six Darvocet per day for pain, and had been running a constant low fever for years. Even with all that Darvocet, I still had nights when I couldn't sleep because the pain was so bad. By Sunday, three days after I started the interferon, my pain was cut in half and the fever was a lot better. Within a couple of months, the pain was virtually gone, and for the most part has stayed gone: I still have some very minor aches and pains at night, and I take one or two Darvocet at bedtime for that and because it helps me sleep; but I almost never have any pain at all during the day. For the most part, I'm pain-free and fever-free.
I do have these weird little 36-hour flare-ups once or twice a month. It's the darnedest thing: it always starts in the evening about 7 or 8 p.m. All of a sudden, wham! the pain and fever will be back. It will stay that bad through most of that night, then by the next morning the pain will be gone but I feel really wiped out and a little feverish. And the day after that I'm fine again. I have no idea what causes this, or why it always lasts 36 hours. The last time I had one, a week or so ago, it wasn't nearly as severe as they have been before, so maybe they'll stop happening eventually. Not that I'm complaining! Having this for a day and a half once or twice a month is one heck of a lot better than having it all the time, and these little flare-ups have never been nearly as severe as my pain used to be before interferon.
The cognitive dysfunction began to improve within a few weeks also, and I have no cognitive dysfunction at all now except when I'm having an NMH episode and shortly afterward. I read several hundred pages a day with no fatigue and no confusion, just as I did before I got sick. I am able to concentrate fully and effortlessly on writing or research or other tasks for eight or nine hours at a stretch without difficulty. This means that I can start thinking about making a living as a writer again, and getting off of this blasted SSI.
What surprised me the most about my recovery was that, within three months or so, I became able to rest again. I hadn't realized until then that, since I've had CFS, I've never really rested. Relaxing is a deliciously pleasurable sensation that I haven't felt since 1983.
I also get really tired now, which is something else I never expected. It's not the weakness that comes with CFS and FMS: I mean that after a period of exertion I feel tired like normal people do, and then I rest and feel fine again. I'm not explaining this very well, but I think that since I got sick in 1983 I've never been really tired or really rested. Whatever that is, it's back now and it's wonderful: I don't have to worry about overdoing it because my body tells me when it's time to take a break, and I enjoy the resting. To tell you the truth, for the last few months I have thoroughly enjoyed being a total couch potato for days on end sometimes. Doing nothing actually feels good now! For the first time since I got sick, I can actually be lazy. And, the most important thing, I no longer respond to exertion with pain and fever. When I get tired, I just rest and feel re-energized within an hour or so. Boy, I never thought that would happen again!
Linda has also written up some very useful info on dosage, sources, etc for alpha interferon for those interested in trying it. If you would like to read it, click here.
Heather and Dr David Smith's Protocol
I first felt ill about 300 metres from where I am writing this now, but I have been around the houses quite a bit since. I was in my first year of university in Nottingham, UK in 1993, aged 18, and studying physics of all things. When I came back from the Easter break it all went a bit pear shaped.
Over the Easter holidays I had not felt quite right. To use a quote from 'Withnail and I', I felt 'unusual'!! I was needing more and more sleep, my appetite decreased and my get up and go had got up and went. I went to stay with a friend over the holidays and where before I had always been dying to go out and party I just wanted to lie down in front of the TV. All this, however, only became clear in hindsight at the time I didn't really notice anything as it was all so subtle and gradual and at no time did I actually feel 'ill'.
When I returned to University and had lot to do and a few late nights catching up with friends but I got to the stage when I found it almost impossible to get out of bed. It wasn't a physical impossibility, my legs still worked but it was sort of like having a hangover and flu at once, 'just 5 more minutes' repeated over the whole day. This was the time when I lay in bed for 23 hours and didn't move a muscle!!
My friends got worried and took me to the doctor who couldn't really do much as it could have all manner of viruses/bugs that go round halls of residence. There the fun began :)
Lots of useless, sometimes even spiteful, doctors saw me and diagnosed pregnancy (no chance!), drug abuse (I offered blood to disprove this but they seemed to prefer to accuse me!), exam phobia etc etc.
The fourth GP I saw was excellent and guessed at ME/CFS and sent me to a pathologist to rule out everything else. At last a diagnosis - one that we had already guessed at but I was told to 'come back if I had any problems' - not very helpful as I thought that that was the whole reason I was there, how naive of me!
Anyway I did gradually improve over the next couple of years by learning to deal with it, getting lots of sleep, pacing myself etc. and felt ready to return to university in 1995, this time to study psychology. In a way this was the most frustrating part of my illness. I was so determined to do and beat the illness through willpower alone yet even that was not enough. I lasted a term and by the end (10 weeks) I had lost 2 stone (28 pounds for those in the US!) through feeling continuously nauseous, always a problem symptom for me, my grades had dropped to borderline fails when I was used to As, and I never got to see the handful of friends I had made because all my spare time was spent sleeping.
In my own stupid way, however, I hid all this at Christmas as everyone, including myself, was so proud that I had beaten my illness to some degree. Nonetheless it all came out when my parents wanted to watch the home video my flatmates and I had made during our last week. I freaked. I could see how ill I looked, and knew what was going through my mind. A near panic attack ensued and everything came out but I felt huge relief to admit that I wasn't coping.
This was the turning point. I did not return to college and finally decided to go and see a doctor that had got a friend of mine better. Somehow I did not consider that I was a serious enough case to 'waste' his time before, despite the fact I had no life!!
I had to wait quite a while for the first appointment but when it came I had 2 hours to give the whole gory story and he told me he would get me better.
There started 3 years of steady improvement and the near 2 years of full health I have enjoyed since.
The treatment involved very carefully controlling what I did each day, starting from a ridiculously low level and therefore allowing myself to get better while starting on a regime of two drugs. He used tripmipramine to help me sleep and therefore feel rested and prozac as stimulant and to help my brain recover. There are more details of the treatment at Dr. David Smith's website but here is an overview...
The brain has a membrane that protect it from various things that you find in the rest of your body because it needs an 'unpoluted' environment. If you are under pressure this can become leaky and it will also be affected if you are ill (colds, flu etc.) In CFS the sufferer may be burning the candle at both ends, stressing about stuff (for me I wasn't happy with my course but wasn't brave enough to change it, there was all kinds of personal stuff too) then on top gets an illness.
If the barrier gets leaky the brain is affected but it is up to the brain to repair it. Thus if the brain is too severely affected it is not able to repair itself and you get stuck, hence CFS. (We all know that fuzzy head during a cold feeling or during stressfull times but it usually goes.) This means the whole brain is affected and explains the huge range of symptoms.
The prozac helps the brain to work again by replacing the chemicals it is lacking and this along with controlling activity means you get out of the viscious cycle.
The drugs are started at very low levels as CFS patients are very sensitive to all drug treatment and I was left in total control of how much I took (as much as possible with no adverse effects.) As soon as the drugs increased to a reasonable level I felt my brain was awakening once more. One of the more bizarre effects was that my eyesight improved (I didn't my glasses anymore!) because my eye muscles were controlled more!
It was hard work sticking to the whole regime, I wasn't allowed to do any activity for more than 10 minutes at a time so I didn't tire myself out but I soon got used to this as rather than try to watch a film all in one go and lose the plot totally through lack of concentration half and hour in I could enjoy the whole thing in small chunks over 2 days.
After a year or so I took up a couple of hours work a week in a charity shop, then moved on the voluntary work in a drug centre (completely by chance but something I loved and would like to do for a living) and in the Autumn of 1998 I returned to Nottingham University as a fresher for the third time. I have hardly had the time to look back since.
My full recovery linked with the knowledge that I missed out on a lot of stuff has meant that I never stop. I can study this time and even enjoy the subject, my grades have improved to As once more. I have time to play in a band and dedicate to two 4 hour practice sessions a week in the evenings. I have a full social life and can even pull the odd 'all-nighter' (going to morning lectures after no sleep) with no real adverse effects.
It is wonderful.
For more info about Heather's battle with CFS, please visit Heather's webpage!
Back to main page