Exploring chronic disease
10 Nov 2007
This cyclist had to put away his bike in 2002 due to CFS. But today, this New York City resident, who has also conquered his depression, is psyched to be more active again thanks to Autoimmunity Research Foundation’s Marshall Protocol. Paul Albert will now take your questions.
Starting in college, I rowed crew. I was not much of a technical rower, but I got pretty good at pulling the oar hard. Crew was just what I needed at the stage in my life.
When I graduated from school, I went on to do triathlons, which include swimming, biking, and running. One of the last biathlons (which is just running and biking) I did, I went from 30th place or so after the run to third place after the bike. It occurred to me then that I could be pretty good on the bike.
In 2001, I blew out my knee a second time, and that kind of sealed it: I would race my bike exclusively. I started to train in earnest, putting in as many miles as I could. My favorite event was the time trial. I was pretty good at putting in a consistent effort and staying just below my red line for a long period of time. One time, I got a lactate tolerance test (LTT) and my coach, who is now my friend, said that my LTT was the highest he’d ever seen. Yup, I’m really good at suffering.
I also took great joy in training, the long rides through the leafy countryside, seeing a doe and a fawn on a misty morning, the flipping off of RV drivers trying to run me off the road. I also liked the camaraderie with teammates. At one point, I had hoped to go pro.
Even so, I kept on hitting an upper limit in my training volume. I would ramp up my miles slowly, but I just could not ride much more than 200 miles every week. That may sound like a lot, but many of my training partners were able to do that without a problem. I would hit 250 or 300 one week, and then I would just have to take the next week almost completely off.
Once I identified this as a problem, I went through a stage where I tried out dozens upon dozens of different supplements. Naturally, none of them helped, and in the process I wasted a lot of money. You’re welcome, pointless supplement companies!
Also, I noticed that if I got too much light– a few hours worth of summer sunshine– I would go for a couple days without sleep. Then I would inevitably crash. Light-induced insomnia, as was the case with my other symptoms, only became worse when I became seriously ill.
That’s true. In fact, a number of members of my family have. My grandma, for one, had electroconvulsive therapy and spent at least a couple years convalescing after bouts of serious depression. I’ve heard that she apologized to one of my cousins for passing on “her sickness.”
I was never quite so bad as my grandma, but I did have first-hand knowledge of all those lame cliches that come out of depressed people’s mouths: I feel disconnected from others; I feel like I lost something important but I don’t know what it is. Blah blah blah.
I would routinely cry for no real good reason. I vividly remember coming home on the 1/9 subway and just weeping. Why? I don’t know! The woman across the way asked, “Are you okay?” Yup, I’m just being pathetic, don’t mind me.
The sadness would come and go. Sometimes I could beat it back, if only for a while with heavy exercise, but most of the time it was just something I had to endure.
As a fairly proactive guy, I was always on the lookout for ways to beat my depression. Over the last dozen years, I’ve gone to two psychiatrists and two psychologists. Generally speaking, I had a lot of faith in medicine as well as psychology, and was sure modern medicine had solved depression. I just had to find what mistake in assumption I was making or what pill I needed to be taking. I came away dissatisfied. I learned that “mood brighteners” didn’t work and that the more I talked about sadness, the worse I felt. (I should say that, later on, after I started the MP, the ability to blow off steam with a licensed social worker who really seemed to “get” chronic disease was a great help.)
Maybe I would have been better off doing something else, but I decided I would approach this problem from as many possible angles as I could and began to read widely. In oversized notebooks, I wrote down notes from books on everything from food to Buddhism. I even defiled myself by reading a number of pop psychology books.
One thing I should make clear is that while the onset of the most severe CFS symptoms happened all at once, I had long been struggling with most of them including food sensitivities, depression, insomnia, etc. Especially depression.
It was the Fall of 2002, and the conclusion of a grueling multi-stage bike race. My body was completely wrecked. I felt like something awful had happened in my body, like I was completely and irreparably broken. Words cannot describe how hungry I was. I must have gobbled down 5,000 calories in three hours. That night and every night thereafter, my quality of sleep vanished, and much as I tried I was not able to go for any kind of ride without my body protesting. Also, I suddenly felt very ill whenever I ate fruits and vegetables. This sounds like a joke, but I would literally cry 2-3 hours after eating a vegetarian burrito (or some cherry tomatoes or a small piece of vitamin C, etc.) and then I would have to take a nap.
It didn’t take long before I began to eat lots and lots of cookies, muffins, and bagels, three to five a day. I simply could not eat enough sweets or other carbs. Also, I would eat sometimes up to five servings a day of Mac and Cheese. It was all I could tolerate during the two years or so before I learned about the MP.
My blood pressure was very low. 80/50 was a common result. Moving from a seated to a standing position was an undertaking. If I stood upright too fast my vision would go dim, and I would have to grab onto a wall and wait for the blood to return to my head.
My sleep was a train wreck. I just could not go to sleep until 4 or 5 am. If I did go to bed at say 11 pm, my eyes would invariably shoot open at 3 am, and I would spend the rest of the night trying to get back to sleep. When I first became ill, I worked at a public library and had to be to work at 9 am. That was rough. One time, I was simply so tired that I found an out of the way room and took a nap on the hardwood floor. I did find a better job: evening supervisor at a quiet academic library. Sometimes though, it was even a struggle to get up in time for my 2 pm shift.
It’s not like I had anything else going on. I didn’t go out. I didn’t have any friends. I didn’t do anything on the weekends. In fact, I had no desire for any of that. All I could do was survive. My free time was all spent at home, and the sum of my time at home was spent resting either on the couch or in bed.
The onset of CFS most certainly did not help my depression. I was sadder than ever. My pillowcase became completely salt-stained because of all the crying. Pathetic.
And here’s the worst part: I still did not know what I had.
It’s a common war story among Chronic Fatigue Syndrome patients. Most of us are just happy to get a diagnosis. It took me a year and visits to upwards of ten doctors. It’s amazing to me that some doctors refuse to acknowledge that CFS is a real somatic illness. I found that as a group, doctors are way too quick to say, “I can’t measure this illness, so you simply must be imagining this.” For about a year, I went from doctor to doctor until, finally, one doctor said, “You have CFS.”
Of course, once you do get that diagnosis, what becomes of it? I’ll say this: outside of the MP, what real treatments are there? I tried many and, naturally, none of them worked. It was very disheartening injecting myself with some kind of porcine liver extract or vitamin B12 or magnesium sulfate and knowing it wouldn’t work, but what else could I have done?
In July of 2004, the very day it was first published, I read an interview of Dr. Marshall’s on Immunesupport.com. That day, I called Dr. Marshall at his home and asked if he thought the MP would really work for CFS. His words still haunt me: “You should read the website.” The next day I made an appointment with my doctor and got my first MP scripts filled.
Honestly, I expected the MP not to work, and I was skeptical until near the end. I expected it to have the same effect as chiropractic, NAET, kutapressin, hepapressin, vitamin injections, Chinese medicine, and any number of other failed treatments– which is to say, none. On the other hand, I did rather like the fact that Dr. Marshall did his thesis and post-doctoral work in biomedicine and that his treatment was originally created to save his own skin. See, only a medical doctor would tell me, as I was told in 2003, that I was “trying too hard” and needed to take less bike rides. And only a medical doctor would tell me that my sensitivities to food were because I was depressed. The fact that some mainstream researchers found the whole notion of cell wall deficient bacteria to be dubious was a mark in the treatment’s favor.
I really had been on the lookout for crazy but plausible ideas. In the history of scientific breakthroughs, that has happened all the time. The father of genetics was a monk, and if you don’t mind the somewhat grand comparison, the theory of relativity came from a patent clerk.
Within 48 hours of first reading that interview, I was taking my first Benicar, and I felt amazing, a feeling I later learned was due to Benicar’s potent anti-inflammatory effect. The immunopathology — now that was a different matter.
Besides an aversion to fruits and vegetables, I lost a lot of weight, some 20+ pounds in my first year on the MP. It was really kind of shocking to one day stop being hungry. In retrospect though, I shouldn’t have been surprised given how anorexia and bulimia are themselves infections, just other types of illnesses caused by cell wall deficient bacteria. I also passed out a couple times.
I never thought my mind was not my own. It’s just that sometimes thinking poses certain challenges.
One day I was doing my laundry. I went down to our building’s laundry room to retrieve my clothes from the dryer. When it came time to put my clothes in my laundry basket and bring them up, I couldn’t find the laundry basket. Where was it? @#%#$%! Someone has stolen my laundry basket! Ooh, I was mad. I taped a note to the laundry door demanding the immediate return of my basket. A week later, in the corner of my bedroom sat my basket. I don’t know how a person can manage to bring a laundry basket back to his room (apparently, I brought it up after the wash cycle) only to forget about it– let alone not see it for half a week, but, congratulations to me. I don’t know what is the applicable awards ceremony, but that golden donkey is mine!
I had an argument with my sister over a game of Boggle. I thought that “it’s” wasn’t a word, which was ridiculous, because it’s is a contraction, which as everyone else knows, is a kind of word.
Weeks earlier, our library’s staff was moving microfilm from old to new cabinets, and I was put in charge. Given that we had thousands of reels, it was quite an ordeal. At any one time, up to four of us were involved, and I had to say which reels from which box went where. Just a bit of simple arithmetic really. Not once– but on four different occasions (!), I screwed it up each time on account of my once unassailable command of basic arithmetic.
As a rule, immunopathology entails revisiting some of your worst symptoms. For me, that was depression. I had some periods during the treatment where I was very, very sad and really struggled to think clearly. At regular intervals I would effectively freak out saying, “This treatment is not working. Why am I doing this?” Ironically, if you know anything about the MP, you know this isexactly how it works– your worst symptoms are brought into sharpest relief when you’re making the most progress. If I were the least bit objective, I would have seen that these thoughts were clearly a product of my immunopathology. My fellow MP patients and the moderators were very helpful in this regard. “You are experiencing immunopathology,” they said. “Just be patient.”
I ran into a brick wall trying to convince my weasely first insurance company to fund the full dose of Benicar. I can’t imagine an organization better conceived to deny me my right to get medical treatment. They would routinely lie, lose correspondence, and claim ignorance. Always the ignorance. I was fortunate in that I had enough money on hand to pay for the Benicar out of pocket, but it’s something that no supposedly fully insured patient should ever have to endure. Fortunately, I solved that problem when I changed jobs.
I’ll say this. I did my job and I did it well. I did everything I could to compensate for the fact that it was harder to think and even harder to be pleasant. Sometimes I would roll in, and my dear co-worker would take one look at me and say, “Oh boy, here we go. I know not to talk to you today!” I learned that sometimes it’s just not a good idea to speak.
I won’t lie though. Some days were pretty grisly: the weepiness, the clouded judgment, the inability to think of… words. It was during those days that I was just in survival mode. It helped to know that however bad I felt those bacteria were feeling worse, and by worse I mean dead.
Unlike some of my fellow patients, I didn’t have to restrict light quite so much. I wore glasses for a while at work. Honestly, I was a bit anxious about wearing glasses indoors, but, soon enough, it occurred to me that being on this cutting-edge treatment was something to be proud of. This past summer, I gave up my glasses and happily found that I could leave them off without experiencing light-induced insomnia.
In many respects, you’re talking to someone who is doing better than ever. I can’t say I don’t have any more sad thoughts. After all, life will always have its ups and down. But what is different about me now is that the negative thoughts and the negative observations have an all but negligible half-life. I never asked for perma-bliss. All I want is, for when bad things happen, to have a measured reaction, and that has happened. Thus far, I think that is the best part about my recovery.
These days, I eat a range of foods including fruits and vegetables with nary a side effect. You’d be amazed at how delectable peaches and nectarines, avocados and spinach can become after going years without. I continue to really limit my intake of pasta, cereal, and breads. No more three bowls of cereal a day!
The sleep has been really good. To bed at 11:30 and up at 8. I might wake up during the night once, just long enough to check the time before I fall back asleep.
Also, I have a great new job. I’m working on lots of fun projects. It is somewhat demanding, but I definitely have the energy for it. I play racquetball with my buddy on the weekends. I can spend lots of time in the sun. I’m more social at work and in general, I’m not put off by people. I have a wonderful girlfriend, who has an even more positive attitude than I do, which, actually, is the least bit annoying, but I can live with it.
I take it back. The best part about my recovery is the ability to once again ride the bike. I had actually thought about selling my two racing bikes, which would have been the saddest thing ever, but I didn’t. My Dad told me, “Don’t do it. You will get better.” That meant a lot to me.
It was about a month ago when it first occurred to me, “Hey I feel well enough to go for a bike ride.” Since then, I’ve gone for about a dozen rides (see figure) including a trip out to Nyack, a ride of nearly three hours and 40+ miles, my longest ride in five years. My heart rate was at 140 beats per minute for much of the ride. Even with all that work, I slept shockingly well, certainly well enough to go for 15 miles the next day.
My biology has conspired to deny me the ability to exercise, so it all feels a bit magical now. My goal is, as it always has been, to return to competitive cycling. Though I am still experiencing immunopathology from the Benicar and the antibiotics some 3+ years into the treatment, I am at the point now where I can really push my body and see what happens. I expect that in the coming year I’ll be able to ramp up to 200 or 300 miles per week or more.
Recently, I came across an old post-it note onto which I copied a quote from Abraham Lincoln. It had appeared in a magazine, and it was taken from a letter our sixteenth president wrote to a friend: “I am now the most miserable man living. If what I feel were equally distributed to the whole human family, there would not be one cheerful face on the earth. Whether I shall ever be better I can not tell; I awfully forebode I shall not. To remain as I am is impossible; I must die or be better, it appears to me.”
Something about that quote must have felt very familiar, at least enough to write it down, yet it seems so strange now. The day I realized that my current self would never copy that down was when I realized I was at the beginning of the end.
I’m different now. I would probably take a pass on inviting former me to a dinner party– and definitely reject my candidacy for leader of the pep squad.
Sometimes people make the mistake of conflating negative life events with a negative mood. One thing this whole experience has told me, now that I’ve effectively shed my illness, is that I am not my moods. I am now convinced that all of my worst moods, the very thing that made life such a struggle were the product of infection. I am 100% convinced of it. And that’s why I feel so comfortable talking about my depression, because it wasn’t who I truly was.
I occasionally think about how I might respond if something really bad happened to me. I’m guessing I would hold up just fine. My mood isn’t on the precipice.
I look back at my other self– the dour, ouchy person– and I can’t help but think, “What a poor bastard.” What could I do or say to get him to realize that things are most certainly not so bad? The problem is, he did realize this was the case, but he did not feel it. Feelings are stubborn schoolchildren, always resisting correction.
1. Get comfy. If you’re ill, the MP is going to take a couple years.
2. While knowledge is power, don’t pretend your bacteria-addled mind can really understand any of the finer points of the MP. In fact, if you admit you know nothing, you may have an easier time with the MP. Ohm.
3. Then again, you probably should know enough about the MP to know when you’re messing it up. For example, if on the MP you are supplementing your diet with megadoses of vitamin D, that is not good.
4. Educate your family and support network. The MP really is not that crazy. It’s based on a highly intricate well thought out treatment and pathology. Lots of people are getting better on it. They need to know that.
5. Once ensconced in your dark, friendless cave, surround yourself with positive influences. Is now really the best time to read The Stranger? I think not. Instead opt for lighter faire like Care Bear cartoons.
6. Have faith. There may come a point where there’s nothing anyone can say that will make you feel better about the treatment, so you just have to believe…. Actually, what am I talking about?! You don’t have to believe anything. The great thing about the MP is that it worked even when I was thinking, “This whole thing is a big fat joke. There’s no way I’m going to get well on this.”
7. Bet your doctor a year’s worth of insurance premiums you’ll get well on this treatment.
8. Rely on your fellow MP patients, and try to make “MP friends.” Find people who have your condition, call them up (email only goes so far), and converse until you’re blue in the face, and don’t feel bad about it. Most of us have done the same thing to someone else.
9. Sometimes, the MP is just hard. Accept that. There is no right way to suffer through chronic illness.
10. Try not to think too much. At some point you’re going to change your mind, and self-refutation is damaging to the psyche.
11. To the extent that time permits when you’re well and enjoying life once more, do try to give back. There are two huge needs for people who have succeeded on the treatment. One, your fellow chronically ill patients need to know about this treatment, and, two, new MP patients need your support. Do whatever you can.
Look, I am but one data point. As a rule, it would be presumptuous to think that whatever worked for me must necessarily work for all others. On the other hand, I never cease to be surprised by the near universality of response to this treatment among those who are ill. People like me with CFS have the same immunopathological reactions as those with Crohn’s as those with IBD: the light aversion, the spike in symptoms, the delayed response to antibiotics, etc. It’s all pretty incredible, so much so that one can’t help but think, what if, indeed, all chronic diseases are animals of the same stripe? What if a cure for any one of these disease was nothing more than low-dose antibiotics, an ARB, light restriction, and time? It’s not so far-fetched. Crazy but not.
I like to think I would have tried the MP even before I became seriously ill– but it’s probably the case that the only reason I did it, all but forcing my doctor’s hand to his prescribing pad, was that I was desperate. I simply refused to be ill. If I was able to treat my CFS early, maybe those years on the MP could have been spent riding my bike. It’s pretty clear to me that the future of the MP is as a prophylactic. At the first sign of illness– depression, chemical sensitivity, asthma, whatever– you do an abbreviated version of the MP, and in the process skip most of the suffering I had to go through.
Sometimes you hear patients complain about how hard the MP is, but it’s only difficult, because you are fighting a lifetime’s worth of unchecked infection. Cell wall deficient bacteria have multiplied in many bodies for decades. You think that eradicating them is a couple week’s worth of antibiotics?
One of the reasons why I help out with this Bacteriality website is because it’s so important doctors, researchers, and patients know about the MP. The MP is not just for those who are hell-bent on getting their lives back. Ideally and this is what the future portends, the MP is for people who aren’t sick yet, but will be if they fail to act. Through my efforts, the goal is that no one ever has to go through what I did.
My only other point here is that in the future the whole range of chronic disease from cardiovascular disease to CFS to bipolar will all be considered to be types of (treatable) infections. As a nod to this, this group of illnesses may one day be called, “Th1 spectrum disorder” or something like it. When you talk to patients who suffer from chronic disease, it’s pretty clear that there’s a lot of overlap, and that making distinctions between one condition and the next is somewhat pointless.
No, I did not.
Oh… you mean my current roommate?
It has been three years since my original interview went up. Since that time, a lot of current and prospective patients have asked me to share how I’m doing.
Those of you who know my history recall that I had four symptom complaints: food sensitivities, depression, unrefreshing sleep, and exercise intolerance.
My food sensitivities appear to be gone. Also, I continue to no longer crave sweets as I once did. Even before the onset of my CFS in 2002, it was always a battle not eating muffins and other sugary snacks. Now, I don’t feel that urge. My sleep is generally refreshing these days. I go to sleep without any sleeping medication and generally sleep deeply for 8-9 hours. Generally speaking, I remain a great deal more emotionally resilient than I once was, even prior to being ill.
However, one area which is not 100% resolved is exercise intolerance. Early on in the MP as I found symptoms resolving, I was hoping that my improvement would be progressive, to the point where 5 years into therapy I would feel so strong that I would have a competitive advantage in semi-professional cycling races. Unfortunately, this has not come to pass. I can still go out for one or two rides a week, but that seems to be my upper limit for training. If I bike more than that, some of my symptoms including crankiness and unrefreshing sleep (but not food sensitivities) return. I would maintain this increase in symptoms is in fact immunopathology. Exercise causes greater tissue perfusion and breakdown, allowing the body’s antimicrobials to target areas not typically as well perfused. This leads me to believe I still have some microbes to contend with. So, these days I use exercise to increase immunopathology in a way that patients in earlier stages of the treatment use antibiotics to do the same.
For this reason, I typically tell people who ask that I am at 85% recovery. Of course, if I simply discontinued serious exercise, that number would approach 100%, with some of my original symptoms beyond pre-illness levels.
At this point, I have discontinued all antibiotics, because they no longer affect me. But, I continue to take olmesartan three to four times daily. If it were truly important to me to race and ride on a high level, I would discontinue olmesartan. I may do that soon enough as I’m curious to see how my exercise intolerance might improve. But, these days I am more interested in seeing what happens if I remain on olmesartan.
I’m very happy with my progress and continue to work with Autoimmunity Research Foundation. I still maintain that the future of medicine will be the Marshall Protocol or something like it. One of my goals is to get researchers to build on the MP.
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown, she wrote her senior thesis on Chronic Fatigue Syndrome and the Marshall Protocol.
Amy has spoken at several international conferences and authored several peer-reviewed papers on the intersection of bacteria and chronic disease.
If you have questions about the MP, please visit CureMyTh1.org where volunteer patient advocates will answer your questions. Another good resource is the MP Knowledge Base, which is scheduled to be completed within the next year.