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!
Take care,
Linda
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.
-Heather
For more info about Heather's battle with CFS, please visit Heather's webpage!
