My Valcyte log – Alf Chesterfield: Alf’s (Amazing) Story
I live in Finland now, and the doctor who is prescribing the drug for me is COMPLETELY CLUELESS in typical CFS fashion. Therefore, knowledge about side-effects, dosage, schedule, blood tests, etc. are all coming from my very limited reading on the Internet. This doctor is certainly not in the ballgame, but that is fine by me, because I have been able to use him to get the prescription. He definitely is negligent in his duties, so let’s hope I do not die from Valcyte, because then my corpse might have to sue him for malpractice.
By chance I found out about Dr. Jose Montoya’s (one of the good guys) tests with Valcyte. Because I had said for years that I believe CFS is caused by “herpes on the brain” and/or “internalized herpes,” I jumped on the idea of Valcyte. Come hell or high water, I was gonna try this stuff, because it jibed precisely with what I believe. So, I printed out whatever I could find on the Internet, made a doctor’s appointment (I have not been to a doctor in years, so this is a new doctor; just someone who had seen my wife about something else), explained everything to him, handed him all of the print-outs, and within about 15 minutes I had an Rx for Valcyte. He knew basically nothing about the drug (which is understandable, because
it is a high-end drug used with AIDS complications), but rather than do a little thinking and reading, he just signed the Rx and said silly things like:
“Do you know what we call Chronic Fatigue Syndrome in Finland? ‘Juppi tutti’ (my spelling here is probably wrong).
Chuckle, chuckle. This is because the people who get it are young and have good jobs. Hahaha.”
I did not understand this one until later: “Juppi” means “yuppie” and “tutti” means “pacifier.” Haha, very funny, “yuppie pacifier.” I guess that’s a Finnish version of Yuppie Flu. Isn’t he clever? Another one of his brilliant moments was:
“I have a very good treatment for this disease. Three shots of ‘GammaQuin’ (this is some kind of immunoglobulin injection,
https://www.sanquin.nl/Sanquin eng/sqn_products_Plasma.nsf/8551110e498bd2c8c12572110034decf/06ff1781d1fdb059c125702a004d8838/
$FILE/GammaQuin%20PIL.pdf), one every two weeks over a six week period, and two x ‘Fortimel’ (this is like ‘Ensure’ liquid nutrition in the USA) per day during these six weeks.”
When I asked if Alf was Finnish he replied:
Nope, I am not Finnish. I am the Great Satan: American. I used to play/coach football here in the 80s. In 89, I met my future wife here. We have lived in many places in Europe and the US since then, but we decided to settle down here about three years ago. Five years ago we had our first child, then 15 months later we had twins. (We now have a fourth.) At that time, we lived in the center of Madrid. Madrid is not ideal for a big family with little tots, so we decided to relocate to more “family friendly” Finland.
Although I had already had CFS for many years, I had it basically under control. Mine was a classic CFS tale: The dramatic first few years, then slow improvement over a number of following years until I was able to live with/around it and function almost normally. But then having three little babies, basically all at the same time, crushed my house of cards. I
spiralled back down into CFS hell. During the last five years there have been days when I could not even lift my arms or head. Yes, stress definitely plays a role in CFS, but as you know, this certainly does not mean that CFS is necessarily “psychological.” Good ol’ Herpes 1 tends to flare up under stress. I used to joke about “Herpes Simplex 1;” well, I
have “Herpes Complex 72.”
About 1.5 weeks after the first visit, I went to see him again to get the Rx refilled. I spoke very slowly, with numerous indications as to who I was based on the OFF CHANCE that he did not remember me; I am probably his only English-speaking patient, and I am certainly his only English-speaking patient named Chesterfield with CFS(!), yet after talking to him for about five minutes, I realized that he indeed had no idea who I was. He did not remember me – even though I am sure he had my file right in front of him. So, then I had to back up and start from zero. Finally, he said:
“Oh yes, I remember you now! Are you cured yet?”
Geez, what’s a patient to do?!
THE BLOG
Day 1: After about 8 hours on Valcyte, I noticed some sneezing and increases in my brain fog and what I call “CFS mucous and nasal crust.” This increase in symptoms was totally unexpected. I then thought about why this might be happening, and I came up with another of my amateur theories: The Valcyte could be killing off some herpes viruses and thus causing increased “waste particles” which were then being cleared out of my system by defense mechanisms. Science fiction? Nope. After a short search on the Internet, I found some info that people with CFS who were giving Valcyte a try indeed did have increased symptoms for “about two weeks.” This is a standard phenomenon called “Herxheimer reaction.” https://en.wikipedia.org/wiki/Herxheimer_reaction Once again, I ain’t so stupid after all.
From Day 1 – about Day 21, the symptoms got worse. As per some Valcyte/CFS reading on the Internet, this Herxheimer business should last about two weeks. It was still going strong for me at three weeks. Why? I have no idea.
Day 21: I THINK I felt some “strength tingling” in my extremities. I don’t know. I mention this only in case it becomes relevant in five, ten years from now as our understanding of this disease and medicine unfold.
Day 21: I got a very bad head cold/flu. Although I was fairly certain this was just a cold/flu that was going around, my brain fog and CFS headaches were taken to a new level. Cold/flu + Herxheimer = walking into walls, holding my head and whimpering in pain, etc.? I think so. There were definitely times when I should not have been driving. I was completely out of it. I was very frightened that the Valcyte was causing a toxic reaction, as I had had no blood tests done yet (I knew about them, but “screw it,” I was going to take this medication or die trying, so I never mentioned these tests to the doctor – and he, of course, never read anything about Valcyte, so he did not know that one should have regular blood tests.)
Day 25: I got a “Complete Blood Count” test on my own initiative. Results were “normal.” This was very reassuring.
Day 26: I THINK I am starting to sleep a little more normally. Interesting. I have always thought that CFS involved “Herpes on the brain,” and this was responsible for the brain fog, headaches (caused by the swelling), and insanity, particularly at night while trying to sleep. Is my brain clearing up?
Day 28: The head cold/flu passed in fairly typical cold/flu fashion. Again, reassuring.
Day 28: Crazy as this may be, I have had a very stiff lower back from CFS, and this may be getting a little better. Sometimes I experience a RELIEVING creaking and cracking in my neck, lower back and even within my skull.
Day 30: That “strength tingling” I experienced before I came down with the cold has returned. It is just some side-effect of Valcyte? Or is it “normality” returning to my limbs after 19 years? Or just my imagination? Again, I don’t know and mention this only for the sake of the record.
Day 31: Bummer, just another typical day in CFS-ville. No definite evidence of a Valcyte-induced recovery yet. The main problem seems to be that, as the day wears on, the brain problems kick in, and by bedtime my head is such a CFS-mess that I cannot sleep properly. One thing the CDC has done well is adopt the little phrase “strange and unrefreshing sleep.”
Bullseye. If someone does not sleep properly for an extended period of time, then he/she is going to have all kinds of problems. That is simple to understand, but so few doctors seem to understand this aspect of CFS.
Day 33: My arms and legs are definitely experiencing something. I referred to it before as “strength tingling.” Sorry to mislead you – and mislead myself – but I think I will change it to just “tingling.” The muscles are also twitching (I have had spells of this before). All of this seems to be either an unintended side-effect of the Valcyte, or Valcyte is working
and this is “clean up” activity in the tissues. Heck, I don’t know.
Day 34-38: I have been sleeping a little more normally. My brain fog is still above normal CFS levels, something which I hope is due to “Herxheimer reaction.”
Day 39: Last night was insane. Just one weird dream after another, with the longest “sleep” period lasting about two hours. Arms and legs still tingling. Since starting Valcyte, my limbs have tended to feel heavier than normal CFS “limbs of lead,” but ironically they also feel more normal. In other words, although my arms and legs are completely exhausted,
the exhaustion feels more like I have just been lifting weights for a week straight as opposed to CFS exhaustion, which is a different feeling with more of a flu tinge. But, as always, I don’t know…
I am now on Day 40, and I will keep reporting in. I owe it to the rest of the people with CFS.
Day 41 Continued: One of the great CFS debates rages on (in my own little world anyway): Should we rest when feeling wiped out, or should we try to adhere to a “regular” schedule and power through phases of agony? I have spent years testing both ideas on myself (I don’t claim any “perfect scientific method” here), but I still am as clueless as ever. Recently on Phoenix Rising we read about Martha Kilcoyne’s story of how she took the “rest when wasted” approach, and she beat CFS.
Gets me thinkin’. All of the years that I have had CFS, I mostly have tried to power through. But I still have CFS. Gets me thinkin’ some more.
I will, however, give you an anecdote on this subject from my own personal experience. Back in early 1991, after seeing various doctors for CFS, I was told that I was “depressed” and that shock therapy was the only way out. “Ok, I’ll do it. I don’t think this is depression, but you do have me convinced it is ‘all in my head,’ so let’s change my brain.” (Please keep in mind that this was in the early days of CFS, so none of these doctors ever mentioned CFS to me – if they themselves even knew of it.) While in the psycho ward for about a month getting my brain zapped (and making my memory capabilities even worse!), I used to go for walks outside of the hospital to kill time. My walks used to take me by an Army Recruiting
station near the hospital.
I had been interested in the military for years, I was in need of a job, and I had a disease that was “all in my head,” so what better way to force my life back on track than to join the Army and get whipped into shape, physically and mentally?!
Yes, I signed up for the Army. From the time I finished at the nut house to the time I was supposed to report to the Army, I had about six months. I used this time to get into the best possible shape a person with CFS can get into. I was constantly walking the razor’s edge with respect to exercise versus overdoing it, and I did get bloodied a number of times,
but in general, I was able to get into decent shape.
Finally, in September 1991, I entered the Army. In classic fashion, they started breaking us down, mentally and physically. Fortunately, I was in much better shape to start with than 99% of the other basic trainees, so initially I was able to compensate for my CFS with a better physical foundation. But within a few days, of course, I could feel my body beginning
to lose the battle. Gradually, I went downhill faster than the other guys, and within about a week I had passed them on the downside. They were “tired, cold and hungry.” I was wasted as only someone who is seriously ill can be. At about day 7 the CFS fever kicked in. From day 7 until about day 70 my fever raged (I was not in normal eight week Basic Training; I was in a special type of Basic Training which can last much longer depending on the military job to which was one has been assigned). Every other guy had one or two spells with a cold or the flu, some of them had to go to the infirmary, but no one else had a fever for over 60 straight days. That is some weird stuff to experience.
My philosophy, however, was that if I keeled over, then they could cart me off to the hospital, and the experiment would be over. And I would even get paid for it. On the other hand, if I hung on, what lay at the other end of this marathon fever?
Was there even an end? Did one finally black out, or did one start to recover? Something had to give, and I was determined to find out.
As an example of how my physical state deteriorated at a rate much different to the average Joe, at the start of Basic Training I could do about 50 push-ups. After about three weeks of Basic, I was down to 8 or 9 push-ups, each one requiring maximum willpower. Have you ever gotten out of bed with a flu to do push-ups? This goes against your deepest instincts.
The other guys probably started able to do about 20 push-ups. While being broken down physically by the training, they maybe then dropped to about 15 push-ups (we actually had a huge graph in the Drill Sergeant’s quarters tracking our physical testing, so I am objective about this at least!). But the drop in performance for them lasted only a week or two. I was in
the gutter for about 8 weeks.
I should also bring up the subject of “mucous” at this point. Yes, a very pleasant subject, but this is CFS, so no holds barred. Because pretty much every recruit has a cold at various times during Basic Training, and because most recruits are not adherents to Emily Post’s rules of etiquette, mucous is basically omnipresent. The guys are constantly producing and
displaying it for everyone else’s benefit (I am sure Freud would have something to say about this).
Well, most mucous looks pretty much like the mucous that you and I are familiar with from our everyday lives. But I, and I alone, produced something different. It was a very bright yellow, goldenrod color, and it had a different consistency than normal mucous. (Sorry to get graphic here, but I am confident that this stuff I was producing is related to CFS, and I want to record this information, so when the Nobel prizes get passed out for CFS research someday, then they can send one my way.)
Think it was my imagination that my mucous was different and weird? Then you would have to debate that with every single recruit besides me who saw it. Everyone who saw this stuff was shocked and freaked out. “Dude, it’s like yellow! What is that? Man, you gotta get to the infirmary. Somethin’s way wrong with you, dude!” At this point I will go out on a limb and state that this mucous was/is part of the CFS story, hence my ramblings about such a nice subject. I still get small quantities of this mucous today, 17 years later, and the quantity is always correlated to my level of CFS at the time.
There is some kind of correlation. Is this mucous particular to the pathogen behind CFS? Or if there is no pathogen, is it the body’s own defense mechanisms gone haywire and attacking one’s own cells? I dunno. (I would advise CFS newbies to learn this phrase by heart and feel free to use it.)
(As an aside here, I should point out that I generally am not in favor of CFS patients getting hung up on every little symptom they experience. This is because when the body gets as trashed as it does under CFS, then all kinds of bad things can happen: allergies, back problems, haemorrhoids, etc. The human body is a mechanism of balances, and tampering with any of these balances can throw all kinds of things out of whack. So, just because you have Bizarro Symptom X, I would not dwell excessively on it unless you are fairly certain of a DIRECT correlation to CFS.)
After about a week of this yellow stuff coming from my nose and mouth, my fever started to lift. I was not really aware of it at the time, because I was so spaced out, that all I could really achieve was to put one foot in front of the other and keep on moving. Then, my physical performance started to go up. In about a one-week spell, I went from 10 push-ups to
about 80. I think I was even sleeping normally! I think I was even “normal!”
Although this may have been a watershed moment, I did not appreciate it as such at the time. I really blew it. I rephrase: I screwed up by not paying better attention to my CFS condition. Why? I can only guess that in Basic Training, there are so many things one is dealing with, and life is plain difficult, so I was not exactly skipping through a field of wildflowers with time to pick the finest ones, smell them and make a pretty bouquet for my pleasure. I was still in Basic Training survival mode.
Then did come a critical moment: Our Basic Training had about a five day break for Christmas. My wife came out to where the base was, we got a hotel for the few days, and I went overboard with sleep, pizza and burgers, and general narcissism. By the end of this little orgy, I noticed that my sleep was messed up again. My body was messed up again. CFS was definitely back – if it had ever even been gone. Had I almost cured myself through months of strict regimen, only to throw it all away at the last moment? What if I had adhered to the regimen a little longer?
To this day I have been unable to repeat the experiment. I have tried dozens of times. I have really tried. But once that fever kicks in, once the blisters in the throat become really painful, once my brain goes totally whacko, I am no longer able to stick the course of a regular schedule. I have four little kids, a dog and a full-time job. I cannot “check out” from my life for 3-4 months in the hope that I can repeat the experiment. Any volunteers? It is tougher than you can imagine; oh wait, if you have CFS, then you can imagine how tough it would be.
This leads me to “Chesterfield’s Protocol” (I am Alf Chesterfield). Again, I need to record this for posterity so that I can reserve my space at the Nobel prize dinner ceremony. Chesterfield’s Protocol:
Take as many bona-fide CFS patients as possible out to a country retreat. It should be early Spring, mild climate and all patients should be from this same time-zone. Nice country retreat, good healthy food, tranquil, birds-a-chirpin’, etc. As pleasant as possible.
The retreat should also have medical staff and labs involved to monitor and test the patients regularly. Someone could get seriously ill, so all of the patients would need to be volunteers and fully aware of how gruesome it could get. Legal waiver stuff.
Have the patients adhere to an iron-clad schedule, including a strict bed-time, wake-up time, mealtimes, exercise regimen, the works. For exercise, I think yoga would be a good choice. Really work the patients physically and mentally, yet keep the regimen healthy from a normal person’s perspective. But…
Don’t let the patients rest more than they would if they were healthy! That is the key! Yes, the patients would/should start to go downhill mighty quick. It would get really ugly. Enter the medical monitoring and testing. Not only could the medical staff try to minimize the chances of serious health problems arising, the staff could also monitor any CHANGES to the body under CFS. We would be taking CFS to the extreme, so hopefully at least some physiological anomalies would become measurable. Just think, we could possibly identify an actual, measurable symptom! (One of the most humorous things in the history of CFS has always been that sleep researchers used to claim that we were sleeping perfectly normally. They claimed that we were only imagining that we were experiencing “strange and unrefreshing sleep.” Just because their instruments and techniques did not record any problems, they were therefore convinced that there were no problems. Now that is bad science!! That one used to make me so mad. Meatheads.)
Keep these patients on this iron-clad schedule for as long as it took for some kind of resolution: Either the patients would have to really get some serious known, measurable illness and withdraw, or else they would “break through” to normality. Nobody would be allowed to quit due to CFS! That is the deal when they start. Calisthenics, jogging, hiking,
yoga; all with CFS. Makes me shudder to think of going through that again.
This may sound simple, but a) getting patients to stick to the regimen while their CFS drags them down to levels of pain way beyond human instinct’s tolerance levels; and b) organizing, funding, finding competent CFS medical staff, etc. would be a massive logistical operation. Nevertheless, this protocol would probably shed some serious light on CFS! At a minimum, we should be able to resolve the debate about whether it is better to power through or rest – or whether it makes no difference at all. This debate is right up there with, “Is CFS caused by a pathogen, or is it psychosomatic?” Sorry, on both counts, I dunno.
PS – If you think I am a little strange, then you may be correct. I have always been a little too thoughtful for my own good. This may further lead you to conclude that “CFS is a psychosomatic disease.” Not so fast. Some people think in terms that CFS is either psychosomatic or pathogen-based. But a real thinker comes up with a third possibility: CFS could be caused by weakness/trauma/injury to the CNS, which then allows a pathogen to “get the upper hand” and wreak havoc on the body. This concept is certainly not science-fiction.
The basic stomach ulcer probably falls into this category. Same with eczema. Perhaps the same with Gulf War Syndrome – which could be the same thing as CFS, both being a fusion of CNS trauma + a form of herpes (and this could also explain why this disease is relatively new). Western medical science is only just beginning to understand this concept. Don’t let some traditional doctor push you around and try to convince you that you are just a wimp! You (and I) may well be wimps, but there is more to CFS than just wimpiness!
Day 43: I actually slept five straight, normal hours last night! No bizarro dreams that I am aware of. In my 19 years of CFS, I have probably slept five straight, normal hours less than a dozen times. I did write already in this blog that my sleep seemed to be getting a little more normal as a general rule. I should also write that the dreams are less vivid, less bizarre and probably less paranoid. I certainly hope this is a trend.
Day 44: Another night of 5 hours of sleep! Is this my poor, demolished
brain finally getting a break?
Day 45: Whoops, right back down the toilet again today with respect to
sleep and CFS symptoms. Bad days certainly are discouraging. It all seems
to make so much sense with respect to the idea of “Herpes flare-ups.” I
certainly hope I live long enough to find out.
Day 46: I think alcohol has an effect on my CFS sleep. I realize that at
first reading, this may come across as something like, “I think getting hit
by a train may have an effect on my body,” but please note that I wrote “CFS
sleep” as opposed to just “sleep.” CFS has its own brand of sleep. Alcohol
may exacerbate the negative aspects of this type of sleep. It is very
difficult to tell for sure, because the relationship is certainly not a
simple equation of “booze in => CFS sleep worse.” There can be good nights
and bad nights. There also seems to be a lag between stopping booze and
improved sleep, but this is not clear. And sometimes I have decent nights
after drinking. Sometimes I have bad nights after not drinking.
I did a little drinking these last few days, and my CFS sleep has taken a
real beating. (As an aside, CFS has driven me to alcoholism. If you think
that is weakness, then I dare you to try four little kids, the oldest one
being five, an extremely demanding American bulldog, and a 50-60 hour per
week job that entails travelling around Europe 50% of the time all plus CFS
and let’s see what becomes of you. Alcohol may have its problems, but it
has definitely helped me on occasion by deadening my CFS “hyper-sensitivity”
to various inputs, so I have flat-out indulged as a means of coping.*)
Day 48: This is certainly not meant to be a sleep log, but I genuinely
believe that sleep is such a serious issue with CFS, that I have to keep
coming back to the topic. As per my amateur thinking, CFS involves “Herpes
on the brain.” This Herpes negatively affects the brain, which, in turn,
messes with the CFS patient’s sleep. Even the CDC lists “strange and
unrefreshing sleep” on their website as one of the symptoms of CFS, so
perhaps there is something to this “outlandish theory” of mine. Of course,
the importance of sleep cannot be overemphasized: Monkey with someone’s
sleep like CFS does, and sooner or later the mind/body will break.
Some sleep last night. Nothing to get excited about, but nothing to cry
about. Consequently, I am fairly functional today. Perhaps a touch of
“normal strength” in my limbs.
My brain: There is a goofy, special type of headache, which is a trademark
symptom of CFS. When I started Valcyte, these headaches increased
dramatically. As I wrote once before, the problem was then compounded by a
head cold I got, and eventually I was quite disabled by the headaches/brain
fog. Totally whacked out. After the head cold passed, things did improve,
but the “Valcyte tinge” on the headaches remained. To this day, I still
have the CFS headaches + the Valcyte tinge. Is this just a side-effect of
the Valcyte? Is it “Herxheimer’s reaction?” Is it just my imagination? I
dunno for sure, but I believe that the headaches now are some COMBINATION of
Valcyte + CFS, and this gives me hope.
If the headaches now were just the usual CFS fare, then it would be business
as usual. If the headaches now were just a side-effect of Valcyte, then I
would know nothing additional about my condition. But since the headaches
seem to be some combination of Valcyte + CFS, this gives me great hope that
we are indeed experiencing Herxheimer’s reaction. Also, the headaches are
slowly diminishing: a good sign consistent with the Herxheimer idea. But
on the other hand, we are at 6.5 weeks now, and Dr. Montoya’s original
belief was that this Herxheimer fun should last “a couple of weeks,” so I am
long over that window. But then again, Dr. Montoya is still working in the
dark on all of this, so he may well revise his conclusions.
————————————————————————
* Dr. Alf Chesterfield on the subject of CFS and hyper-sensitivity: If you
have CFS, then chances are you are well aware of what I mean with
“hyper-sensitivity.” Everything from noise to light to smells to chemicals
to touch to thoughts to dreams to… All of your senses can be jacked up
into the stratosphere. Sometimes my hearing is so acute, I can hear Kim
Jong Il flushing his golden commode all the way over in North Korea. I have
worn earplugs for the last five years to try to shut out this awful noise.
Your basic garden variety doctor listens (with that patronizing smile we all
know) to the CFS patient describe his/her hyper-sensitivity and then
responds with something like, “Yes, I am sorry to hear that. I think you
should try to relax, take it easy for a while, and this will all blow over
soon enough. Sometimes people can get sort of wound up, and overly
sensitive. Ah yes, I remember my time as a medical student. I sure was
uptight too. Have you tried meditation or yoga? I could also prescribe
some medication to help you relax, if you think that would help, but I think
it would be better to start with some safer approaches. Blah, blah, blah.”
But, alas, the poor doctor cannot fathom the concrete intensity of this
hyper-sensitivity. It is, I believe, unique to CFS.
The whole issue of CFS, the Hypothalamus-Pituitary-Adrenal (HPA) axis and
hyper-sensitivity is very complex. I think if we really examine the issue,
then we end up with the classic and unsolvable (for now anyway!) mystery of
“which came first, the chicken (CFS) or the egg (hyper-sensitivity)?” That
should be the lesson of the day. Darn, stuck spinning my wheels again…
This topic also ties in with allergies, certain forms of arthritis and
probably many other ailments as well. I, the highly esteemed Dr. Alf
Chesterfield, believe that we are all allergic/sensitive to numerous things,
but the better our general health, then the less adverse our reactions to
these things. The worse our general health, a la CFS, then the more adverse
our reactions to these “invaders.” That scoop of Monosodium Glutamate in
your take-out Chop Suey would probably go unnoticed if you were really
healthy; it might make you a little flush and give you some skin prickles if
your health was far enough below optimal; and if you had CFS, it might fry
your brain buzz noticeably and send you into a tailspin. Same thing with
that furniture polish. And the exhaust pouring out of that car in front of
you. Etc. And same thing with that Herpes virus still hanging around in
your system!!
All of this regarding the mind-body connection is standard fare in Western
medicine today, but just a few decades ago, this “Eastern” understanding of
how our mind/body/spirit work as a single unit was scoffed at by most
Western physicians. I just love the example of the stomach ulcer: Caused
by stress? It was when I was a kid. No, wait, revision: It is caused by
bacteria! Just take some antibiotics, and it will go away! Hmmm, wait a
minute, why do people get ulcers when they are stressed? If ulcers were
just a simple bacterial phenomenon, then it would all be so simple. But
there is definitely a tie-in between the patient’s stress response and their
susceptibility to the bacteria.
——————————————————————
Conclusion of this ramble? CFS is probably some combination of
inter-locking ailments which include a (viral) pathogen and immune system
malfunction originally brought on by excessive stressors and genetic
disposition. Once this inter-locking combo gets rolling, then breaking the
lock becomes extremely difficult. If you stay in bed and nurse your
symptoms, then, fine, your viral symptoms subside, but you simultaneously
mess up your body’s normal immune system. This leads to increased
susceptibility to the viral invader. Conversely, if you try to treat your
body normally in the sense of “hours of operation,” eating times, stress
inputs, etc., then you will get blasted by the pathogen, because your immune
system is not up to snuff.
How to break this vicious cycle? Perhaps slowly, very, very slowly.
PS – Here’s another thought to put into your pipe and smoke: The rise of
this disease coincides with the rise of Herpes and ever-more virulent forms
of Herpes. The rise of this disease does NOT coincide with the rise of
excessive stress! People have been stressed out of their gourds plenty of
times throughout human history (and pre-history), but I do not believe CFS
was prevalent (if it even existed). Probably 80% of soldiers from all wars
over all time would have CFS if it was just “mega-stress.” And this would
have most likely been noticed. But these soldiers did not get CFS. Now add
mega-stress with goofball forms/strains of Herpes and you get CFS. Gulf War
Syndrome vs. WWII “battle fatigue” explained.
Approximately Day 90 – After not communicating for a month and a half Alf reports that “Operation Valcyte” is not working, and not only did it cost me about EUR 10k, but it broke my will (which has been repeatedly broken and rebuilt during these 19 years of CFS).
Physically I am not that bad now, but I am empty spiritually. So, I just shuffle on, thankful that I have a well paying job that does not tax me physically too much… Maybe I will rebound in a few years and can then make another run at some therapy or treatment. As you probably know, pulling oneself up by one’s own bootstraps becomes impossible after a while, so it becomes a matter of passively letting the batteries charge rather than cranking the generator oneself.
(So ends Alf’s rather amazing self-engineered Valcyte trial)