Embracing Reality

I admit it.

I really blew it, big time. Two weeks ago, after my last "glowing" report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I moved from the reality of my health,  to a fantasy world of my own making, which convinced me I was almost healed. It was not only stupid, but because I knew I was only half-way through the treatment protocol, it was unrealistic.

I've had this problem of moving into unrealistic expectations all my life, even before I got sick.

I remember in the 5th grade, setting up my little home-built "Estes" rocket in the driveway of our Southern California home, convinced that I was launching something straight out of NASA. Based on the big color advertisement in Popular Science magazine, I had convinced myself that my "Explorer" rocket would fly straight up over my house, reach apogee,  take a picture with its little onboard camera, fire off a parachute, and come floating down into my hands on a perfect trajectory. I was an astronaut!

"How cool!" I thought.

Of course it didn't turn out to be quite that cool.

After struggling for an eternity on aching knees with the little battery powered igniter that just refused to work,  I finally had to do the unthinkable. I asked my Grandmother Flo to come over and help me.   Now, you have to know, no 9-year rocketeer ever wants to have to ask his Grandmother Flo to help him do anything, but since she was the only person in our family who smoked, and had fire, I recruited her to my pyrotechnic team. 

"Do you have any experience with rocketry, grandma?" I asked semi-seriously. 

"No," she said, while taking a big drag on her 30th Viceroy cigarette of the day, "but that won't matter a whit. I'm game!" And even with her depression-era manner of speaking, I knew she was.

"Just take your lighter and touch that fuse there,  grand..."

Before I could get the rest of "ma" out of my mouth, I heard a "whoosh" and saw a  the Estes rocket scream into the skies.

Well, in all honesty, to say I actually "saw" my rocket launch would be stretching it - I basically "heard" the thing ignite, and figured by the smoke and the surprised look on my grandma's face that it was airborne. So I looked up expecting to see it soaring, just like the color advertising and pictures on the box illustrated.

Unfortunately, by the time I got my head and eyes looking upward, my rocket was already floating down to earth, barely visible in the distance, about 1000 feet away, dropping like a dead bird right over Foothill Blvd. So I took off running.

By the time I arrived at the busy "touchdown zone" the cars on Foothill Blvd. had already completely destroyed my Estes Rocket.  Had it not been for that tiny patch of cloth stuck on an oil patch in the road, (which I assumed was the "parachute"), I wouldn't have found it.

When traffic cleared I ran into the road, picked up what was left of the debris, and dejectedly walked home. My grandma was there to greet me, grinning broadly with that Viceroy cigarette hanging out of her stained teeth.

"You did it!" she shouted,  while lighting up her 31st cigarette of the day. "That was great!"

"Grandma," I said sadly, "it was nothing like I imagined. I expected it to fly for a long time, and parachute back to me, like the picture on the box. Not just hear a 'whoosh' and have the whole thing over in 10 seconds!"

"Oh, that's the problem with expectations," she said, taking another drag on that Viceroy. "It's a fantasy. But the expectations get us to a place where reality takes over...and reality is always better than fantasy," she said.

"Why is that?" I asked her, sincerely, no longer focused on her stained teeth, but genuinely interested in this Waltonesque wisdom. 

"Because, up until a few minutes ago," she said through smoke plumes, "you were just one of thousands of boys who only dreamed about shooting their very own rocket. But now, I bet you are the only boy in your school who can say they actually did shoot their very own rocket! And 25 years from now, you'll still remember this story, and the fact that it only lasted 10 seconds won't matter a whit."

Grandma Flo was right about everything. I was the only boy who could tell that story, and I milked it every chance I got...at least through Junior High. She was right about remembering it too.   It's been more than 25 years and here I am telling the tale in detail as if it was yesterday.

I guess I still haven't learned how to control my great expectations though.

On the heals of the great report from my doctor and how good I was feeling after my 6-month evaluation, I had moved into fantasy world. I started imagining myself doing things again. I began to get into magazines that had bicycling and hiking themes, remarking to my wife that we should plan a trip to the Rockies.

After being enthralled by a TV commercial about a jazz club opening in town,  I foolishly remarked that maybe I would "take her dancing this weekend."  Even though I was only half-way through my treatment, I started thinking and acting like I was already finished, and completely well. I was an astronaut again, flying rockets in a dream world of my own making.

Then after about 4 days of this bliss, I woke up sicker than I had felt in a very long time. My glutes were killing me. My sciatic nerve was twitching. My back was so sore I couldn't bend over and touch my knees. My head felt swollen. I had brain-fog bigtime.

I had fantasized myself right into a huge flare, and it was my own fault.

I had forgotten that the "healing curve" on Ampligen, or any therapy for that matter, is more like the stock market - up a couple days, down the third. The ups and downs vary day by day, but over months, the curve or slope is slightly up. 

As our systems adapt to the healing process and homeostatis, we take three steps forward, and then two back. Even today, in my 7th month of treatment, I still have good days and bad days. But the bad days are getting fewer, the good days are increasing, and my healing slope is going up. 

But I forgot all of that 2 weeks ago, by not embracing the reality, and letting my dreams get ahead of wisdom.

Doctors and researchers report that most patients who battle Myalgic Encephalomyelitis are former A-type personalities, super-achievers who, before getting sick, dreamed great things, believed amazing things, and created awesome things.  We are personality types who are wired to set unrealistic expectations, distant goals,  and then astound everyone by trying to actually reach them.

Kim Phillips says that in 20 years working with CFS patients in neurophysiology therapy she has never met one who wasn't brilliant. Maybe you don't feel brilliant right now, but you are. Our minds and hearts are more than game...It's just that our bodies aren't cooperating right now.

I confess, I didn't feel brilliant on the couch this past weekend, barely able to stand up. I actually felt like an idiot. But my wife helped me snap out of it.

As I slowly limped into the kitchen, hearing a jazz favorite on the radio, holding back tears I said to her, "I really wanted to take you dancing this weekend, sweetheart."

"So dance with me now," she said, holding out her arms.

And that is exactly what we did. For about 10 glorious seconds, which was just about all the energy I could muster, I danced with my wife in our kitchen. No, it wasn't in a fancy jazz club. No the music wasn't live. And it wasn't anything like I had imagined in my fantasy.

But it was reality. And it was mine.

And just like my Grandma said, I have no doubt that 25 years from now I'll not only remember this dance, but I'll be telling this story in great detail - how I enjoyed embracing reality, by embracing my wife, and danced with her in our kitchen. And the fact that it lasted only 10 seconds won't matter a whit.

What I Look Like Just Doesn't Matter

I admit it. I now have a pot-belly. And it bothered me.

After being underweight for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned!  But with it came a whole new set of problems for me.

The most obvious one is that my body looks weird to me now. Yes, I still have the skinniest legs in North America, and some years back, thanks to the gluten sensitivity and the "gluteal wasting" aspects of this disease, I lost my butt completely. I used to be an athlete, running 6 miles a day, doing squats and all sorts of weight lifting, and was pretty proud of my athletic buns. Not today.

My silhouette from the waist down, to quote Foghorn Leghorn, looks like "the highway from Ft. Worth to Dallas. No curves!"

My pants no longer stay up at all, regardless of how hard I yank my belt. Picture trying to put a belt on a solid marble smooth Roman column - that's my dilemma each day. No matter what you do, the belt just slides right to the ground. Smooth, straight, and shiny...there's just nothing there on the backside to hold it up!

Now slap on a papoose on the front side above the belt line and you have an idea what I saw in the mirror, to my horror, the other night. On the cellphone with my wife I screamed out, "Geez, I have a pot-belly!" I exclaimed. "I'm getting too fat!"  She of course said all the right things about "loving the man inside," and "being in love with more than my body," but it still bothered me, in the same way that it bothered me when I was way too skinny.

Two years ago, when the stock market was in the toilet and long before I started Ampligen, my business partner saw me in person after only talking on the phone for about a year, not realizing how skinny I had become.  I was down  to 167 pounds at the time, (I'm 6 feet tall) and until I saw the look on his face I wasn't real worried about it. But he looked so freaked out seeing my suit pants tied around my waist like Ellie May Clampet's jeans with a rope, and the lack of curves in my face, that he blurted out something like  "Man you're really skinny. Are you all right?" I think I deflected a little and said something like, "yeah, my weight goes up and down like the stock market," but his shock was noticeable to me. And was one of the ingredients in my decisions to come here to start Ampligen.

As it turns out, the fluctuation of my weight while fighting this disease might be a good stock predictor. I've charted my poundage over the past 2 years and have concluded that the bigger my belly, the higher the S&P average. I just completed my 22nd Ampligen treatment, and the Dow popped up over 11,000 yesterday, probably because I hate a whole strawberry cheesecake the night before. But get ready to sell; I'm going on a diet soon!

All kidding aside, the dietary and appetite challenges we face can affect more than just how we look. This stuff also affects how I feel about myself.

For example, with or without an appetite, for me to go to a restaurant and actually order something I can eat is torture to me. Finding an entre that doesn't have wheat, msg, sugar, seeds, hot-spices, etc. makes reading the menu a chore, rather than a pleasure. Getting a waitress to actually cooperate with my limitations and "strange requests" make it all the more challenging.

I was at a local steakhouse with a friend recently,  and discovering that the day's lunch menu had nothing I could eat, I decided to make something up on the spot.

"Can I have this salad without the onions, crutons, and tomatoes please?"

"What?" she asked incredulously, "I mean, you'll just end up with lettuce and cucumbers, sir."

"Great, that's the salad I want please. Just lettuce and cucumbers."

Now on a roll I thought, I continued humbly: "Can I get this halibut poached instead of barbequed?"

 "Oh, no, we don't have that, sir." she said matter of factly.

With my lunch mate looking impatiently at his watch, I started feeling self-conscious, so I decided to move into my Jack Nicholson in "Five Easy Pieces" mode.

"OK," I said, smiling as sincerely as I could, "Do you have doggie bags?"

"Yes, sir. Why?"

"Well, take the halibut from this item, and instead of BBQing it, throw it in a doggie bag. Then take the onion you took off my salad, and throw that in there with 4 ounces of water. Ask the chef to seal the bag, shove it in the oven for 25 minutes, and serve what's in the bag to me on a plate. You now have poached halibut!"

Now I confess, part of me was delighted in my creative ordering solution that day, but another part of me was actually embarrassed to have to be so "special" and "different" at a restaurant in front of my friend. And that's the biggest rub, and biggest lesson I'm taking away from all this body morphology thinking.

What I'm discovering is that what I look like just doesn't matter. Whether I look good or bad, "normal" or sicker than a dog, it doesn't change people's perceptions of me, or more importantly, my perception of me.

Sometimes the problems we face are that we often don't manifest symptomology externally. Many of my fellow patients tell me "we are damned if we do, damned if we don't," referring to the fact that so much of our illness is invisible, that many friends and loved ones will actually say these gut-wrenching words: "Well you don't look sick." On occasion in frustration trying to explain to an ignorant doctor, I've asked, "would you treat me different if my pancreas was hanging out of my torso, or my spleen was running out of my nose?" The fact that I wore a suit to his office and wasn't bleeding sadly affected his diagnosis, adversely. I've learned the hard way that on doctor visit days, I shouldn't shave, bath, or brush my teeth. Helps with the diagnosis, if you know what I mean. I'm serious!

Apart from physician visits, I think it's natural and healthy to want to leave the house dressed nicely, with the best attitude possible despite difficult circumstances. But when I put on a false face, and am worried about "my figure" or the fact that I have a "pot belly" instead of simply getting well, then I've crossed the line.

So I now wake up every day no matter what with a smile, pleasant music, and a bath. I shave whether or not I plan on seeing anyone that day. I put on clothes that feel good to me, rather than flatter my figure. I look in the mirror, see my butt-less frame, my growing pot belly, and say out loud, "baby got no back, but baby got belly!"

Then I say that which is most important to God.

"Thank you Lord, that I'm alive today, that the Ampligen is healing me, as evidenced by this weight gain. I'm one of the bravest guys I know, and this is going to be a great day!"

Then I rush to the Internet and buy more stock.

7 Absurd Things I Do to Make Life Manageable

"I am thankful for laughter, except when milk comes out of my nose." Woody Allen

It was Christmas time and the jazz band on the corner was playing the requisite boring Jingle Bells music. I just completed my 17th treatment yesterday, and things are going well. So much so as I passed the corner,  I was reminded of how bad I felt when I arrived here three months ago. I had just come to the USA in the heart of winter without a coat,  to start my Ampligen treatment,  and I felt sicker than the proverbial dog. I needed something to break me out of my funk, cheer me up, and make me smile. I saddled up to the leader on the trumpet with the donation bucket in front of him, and said, "Can you play something else?" He replied "Well, the city wants us to play holiday music." I flashed him a $20, and said, "How about something by Steveland Morris?" 

He grinned from ear to ear, took my $20, and said, "Why not? A little something just for you, by the great Stevie Wonder!" His 5 piece group then lit up the block with a fast version of "Isn't She Lovely?" for 10 minutes, while I just soaked in the shower of brass therapy.

Someone in the crowd expecting "Winter Wonderland" mumbled, "that's absurd!" I just smiled and said to myself, "Yes, isn't it? I'll take absurd right now, if it helps me feel better." 

Face it- you’re special. You can’t do the same things “normal” people do, and may need to do certain things that others don't, just to survive. But there are ways to manage, even if on the surface they may seem absurd.  Here are some simple yet very effective “tricks” I use to help make the days easier, routines more balanced, and my recovery times shorter.

1. Use a checklist for Daily routines. - Pilots use checklists not because they don’t know how to start the turbines, but so they don’t forget some little detail. Because I know my memory sometimes fails me and I can forget to take important meds, or even forget to eat, I have a checklist of routine things I do each day that I use religiously. This takes the pressure off my mind and also eliminates that cycle of frustration that happens when at the end of the day I’m lying in bed wondering “Did I take my B-12 today?”  or “Did I do my exercises today?” My checklist starts with such basic things as "Turn on music" "Draw hot bath" "Take Vitamins" and "Shave." Yes, I've actually had to be reminded to shave- that's how weird this virus is.

2. Open up the creative side. - I’ve found that when I read short poetry, look at modern art, or rotate photos in frames, my day goes better.  My daughter the psychology major tells me I am exercising other parts of my brain by doing so. My Pastor reminds me that I am not just "body," but "spirit, soul and body." All I know is reading a Psalm, listening to Supertramp, or playing the piano makes me feel more at peace even while the virus is raging.  For example, since starting on Ampligen I have put over 30 photos of friends and loved ones around my apartment and they make me smile.

3. Play “Soundscapes” music. - The cable TV company I subscribe to has over 100 channels of music, and I’ve found a “new age”  or “ambient music” one called “Soundscapes” that I like- it is just like the stuff they play at spas and when you get a massage. Slow, gentle, almost invisible music plays in the background of my apartment almost all day. Sometimes I fall asleep to it. The AMTA says that the ambient music therapy can positively affect all sorts of cognitive and behavioural changes. 

4. Plan to do half. - My NeuroTherapist gave me this idea. She says it’s better when I think I can do 2 hours of shopping, to actually only do one hour, and then get horizontal. If I think I have energy for 15 minutes of walking in the park, I should do 7 or 8 minutes, and then quit.   I’ve also found through trial and error it is better for my head and my body to do things in short bursts. If I write a letter I might do it in 3 paragraphs, spread throughout the day. To do my income taxes, I am doing just one page a day, for the next 100 days. A good friend of mine while sick with this virus got her law degree one class at a time, over a 7 year period.  Jazz great Keith Jarrett, also an M.E. survivor, sat at the piano in 10 minute bursts, wrote a couple notes, and then went back to bed when he was really sick.  When we push it, we usually set off the cascade of symptoms- and that is not good. So take in small bites.

5. Connect with others. – If I didn’t have my wife and daughter, some close friends to talk to by phone, my online forum friends, Twitter, and some fellow patients who understand what I’m going through, I would have gone nuts a long time ago. It helps when I am honest with these folks, and if I’ve had a bad day to admit it. If you are fortunate enough to have a fellow-patient in your life who can encourage you and say “You are going to make it. You’re doing great!” then you will find they make up for all the lost friends and toxic “friends” that are poison.

6. Get horizontal, often. - Whether it’s because of our orthostatic intolerance, our immune systems on overdrive,  the toxins in our systems, or any of the other things we battle,  we need to take breaks. My Doctor says that the definition of a “break” is actually getting my legs and head parallel with the floor, or it doesn’t count. I’ve found that 5 minutes horizontal “recharges” my tanks. I do this in shopping malls, in restaurants, whenever I need the break. When I travel I am shameless. I lay down in the airport all the time, on the dirty carpet, waiting for airplanes, boarding times, whatever. It's amazing how contagious it is. Once other passengers see me on the floor, others do it too! No one likes standing around an airport when there aren't enough seats...even "normal" folks.

7. Laugh. - There is something medicinal about the endorphin release when I laugh that always makes me feel better. Many researchers have found that laughter helps the immune system. Since starting on Ampligen I have purposely chosen not to watch Glenn Beck, Keith Olbermann, or really any news show apart from local weather, because it depresses me. Instead I watch The Comedy Channel, and literally laugh my ass off. When I am with a patient friend of mine I make it my goal in life to make her at least guffaw or chortle, because when she laughs I laugh more! Sometimes when I can’t sleep and I don’t feel like laughing I’ll force myself to “fake-laugh” and after 10 seconds I actually feel the giggles turning to reality. Probably because it’s so ludicrous, I actually find myself the funniest guy I know at those moments, and I sleep like a baby. 

Three months ago I arrived in this town to try to get better, and I started my therapy that day with the absurd idea that a little Stevie Wonder music would make me feel better. It was. And it did. And I still keep doing absurd things for that reason.

Feels Like Victory!

Treatment #12

I hope this doesn't gross you out, but yesterday I ran to the toilet 9 times and had nothing to show for it. Yes, another surprise, yet not altogether bad result of my Ampligen treatment. But one I actually was happy about. Let me explain.

I guess I'm now considered a veteran - because my twelfth Ampligen infusion went off like clockwork. Gwen found a nice vein the first try, adjusted the rate to take 40 minutes, and because by coincidence we were the only ones in the room that day, we chatted about her son, and life in general. She's a great nurse and I realize how much her kind and friendly personality makes the infusion process less dramatic for me. What I didn't know was that there was drama coming later.

Over the past 6 weeks on this drug, the side effects themselves have been unpredictable, but the timing of them pretty regular. They usually begin to appear at least 4 hours after the chemical is dripped into my body, and hit big time by the next day. I've had everything from headaches, extreme muscle aches, nerve twitches, to strong lower back pains - but never the same one twice in a row, and never all of them at once, and rarely repeated.  It's almost as if the Ampligen is taking care of different areas of my body one at a time... and then moves on. For example, early in my treatment my glutes (buttocks muscles) would REALLY hurt me the day after my infusion - more sore than if you had done 10 sets of squats, then ridden a horse for half a day, and then had the flu. But I no longer feel that anymore. The side effects are moving to new places. 

This week it was my stomach's turn to react. And react it did.

The Battle of the Bulge. I've never felt this situation before. How can I describe the contradiction in my gut? It was as if I was constipated and had the "trots" all at the same time, with turbulence and pain moving between my stomach, upper, and lower intestines at will. If you said it felt like a battle was going on in there, you wouldn't be overstating it. This was nothing like the worms, parasites or other stomach invaders I've had in over 30 years of globetrotting. I have traveled to many tropical countries.   I am very familiar with amoebic dysentery, "Montezuma's Revenge" and traveler's diarrhea - trust me, this was not the same.

This was more like an army (my own immune system) waging war - rooting out insurgents or terrorists in a territory that they had long held hostage, and had called their own for a long time. Think of what it takes for American forces to find Taliban terrorists rooted into the homes and city-centers of the people of Afghanistan, and you'll get the picture.

Even in my pain and discomfort, I had the sense that Ampligen and my immune system were finally starting to turn the tide, and kicking some ass!  That what I was feeling was like what one G.I. in Afghanistan said after too many years of losses and bad battles, and they finally mounted a drive into the heart of Taliban territory.  After seeing four of his buddies blown up in roadside bombs, he and his squadron were finally given the green light to go after the murderers hidden in homes. He turned to the news camera with his night-vision equipped XM110 semi-automatic and said "we're not going to take this shit anymore. Time for victory. Say hello to my little friend."

I think the Ampligen was helping my defenses expose one of the invader's long-held comfort zones in my body- my stomach, and were going after them.

My gut was confirming  what I had read recently, that researchers documented in some pretty well publicized reports in 2007; that while various viruses have been shown to trigger M.E./CFS, (including Epstein–Barr virus, Chlamydia pneumoniae, parvovirus B19, Coxiella burnetii, Borna disease virus, varicella zoster virus, cytomegalovirus, and human herpesvirus type 6 HHV-6), that the most common of all was enteroviruses -- viral microorganisms that reside in the digestive tract. These well documented reports, news stories, and peer-review Journal articles showed how almost all of us who suffer from this disease, have invaders in our stomachs. That the Ampligen was kicking up some trouble there in my body only served to confirm it. And apart from the pain, that actually made me kind of happy.

How Ampligen does this is still sort of a mystery to me. As an "experimental drug" you can't just go to the PDR or Drugs.com and look up the "mode of action" or "side-effects" that you can with an FDA approved drug. But there is some data out there, which I continue to collect and post as links on the left column of my blog The New Ampligen Diaries. Feel free to check them out. 

Today, all is quiet on the western front.  The turbulence in my stomach has subsided, and thanks to a little help from Pepto Bismol, I've been to the bathroom and had victory. OK, I can't resist. Guess I have to end with the Robert Duvall line here. "I love the smell of napalm in the morning. It feels like...victory!"

Even a 1% Change Makes a Difference

Treatment #11

I made three very small changes in my protocol today, and although I really can't determine scientifically their effect, experientially I can say that while all three  were very minor, percentage-wise, collectively they added up to a big difference in how I felt. As usual, to me it is the little things that seem to add up, either positively or negatively -  to how I feel overall. It didn't used to be that way, but as a person with a mysterious virus roaming around his body, and an immune system working it's little ass off trying to fight it, sometimes just a 1% change in something I do, or don't do, makes a difference.

There is a hilarious line from the award-winning TV show in the USA "Dr. House" where the irascible genious Dr. Gregory House is trying to make this very point. One of his assistant Doctors is arguing that even though the test result is off slightly, it is still "in range."

Dr. Foreman says: "It's off by one percentage point. Within range. It's normal." 

Dr. House replies: "If her DNA was off by one percentage point, she'd be a dolphin!"

So with that in mind, I share these seemingly insignificant, tiny changes with you.

A Little Change in my Headgame

This could be my theme for the week, because how I think about me and my circumstance, actually does affect how my circumstance affects me, and my body.  Unlike last week, where I simply arrived at the clinic and was so surprised by some of the negative circumstances I encountered, today I spent time getting my "headgame" together before entering - to try to avoid the surprises.  What I mean by that is I proactively calmed myself, did some deep breathing, and even envisioned how I would react if the nurse missed the vein.

It's been documented that because our immune systems are on overdrive, and we have lived with so much pain for so long, our brains and emotions sometimes "over-react" to stimuli. I tell my wife that sometimes just the rattling of grocery bags in the kitchen sounds in my head like she is banging trashcan lids together one inch from my ears. So unlike last week, today I actually did a little "role playing" in the car ahead of time, and said to myself "OK, if she misses the vein, no big deal. It's not that painful. She'll find it the second try. No need to flinch." 

My goal was to try to prevent the release of "bad" brain chemicals by limiting the stress and anger that comes through the natural fight/flight mechanism, that for us is often too sensitive, and is too quickly triggered. I mean, if some thug is about to attack my wife, I WANT these chemicals coursing through my body. But they are overkill when all you want is a tiny needle and an I.V. drip to get going.

It turned out my pre-game prep was wise, because it turned out Gwen had to stick me twice to find a good vein. But because I had already anticipated the reaction, I actually was pretty calm about it, and hardly reacted at all. I think I might have said, "whoops, that missed," because you can usually feel it when the needle pokes out the back of the vein,or misses completely. Gwen actually thanked me for "not stressing her out," so we both were much better for it today. The last thing you need is to have the person with a needle in their hands hovering over your vein, too stressed out.

But more importantly, I learned something I am going to expand on and develop further as the weeks ensue - that part of my healing can actually come from the environment I establish myself, for myself. I don't mean anything goofy like mind over matter or Christian Science, where we deny real symptoms and pains. But i learned that sometimes anyway, if I can choose to avoid stress, I can give my body a break by not flushing it with those stressor chemicals, and hormones  that ensue.

A Little Change in the Infusion Rate

The second thing I did differently today was to slow down the drip slightly. Thanks to a friend who had a similar therapy a few years ago, she called my wife to recommend that because my body was much like hers, with very low body-fat percentage, I might benefit by a little slower infusion. Her doctors told her that "skinny" people's bodies just can't absorb or metabolize that much drug infused that fast, as well as more portly folks. There was a study apparently done on chemo-therapy patients that showed just changing the rate by 10% could make a difference. So I asked Gwen if it was permitted, and she said, "sure!" So instead of taking 30 minutes for the 2 bottles to infuse, we took 40 minutes.

A Little Change in my Treatment Mix

The last thing I did differently today was to add some magnesium to my saline after the Ampligen. I had read from numerous other doctors that magnesium could help with both the muscle aches and flu-like symptoms that were the natural side effect to our immune-systems' boost that ampligen provoked, and my Doctor gave me the green light to try it. So at the end of the Ampligen, Gwen injected some small amount of magnesium into my saline bag, mixed it up, and let 'her rip.

A Little Change in the Results

This was the easiest infusion day I've had in weeks. I had hardly any muscle aches whatsoever, and the flu-like symptoms came as usual, a few hours later,  but they were much more tolerable. My appetite, which is a good indicator of how I feel, returned. And amazingly, for the first time since being on this protocol, I actually wanted to watch TV with my wife on the day of the infusion. Usually, the sounds and lights of the TV shows were too much for me, but for two full hours we watched repeats of this show "Biggest Loser" with many laughs and tears. It turns out that the people on that show are some of the bravest, winners you'd ever want to meet!

All of these were small changes, and in many ways, hardly worth the time to mention. But for those of us fighting this disease, even 1% changes can make the difference between feeling like a human, or a dolphin. Seriously.

Fighting the Insensitivity of Others

Treatment #10

Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating. 

This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other people. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it - the medical professionals treating me, and from certain family members who really do love me. 

Let me dispatch both quickly, so that I don't re-attenuate my anger and dissapointment, and allow them to adversely affect my healing any more.

When it comes to family, (in this case some blood relatives who live a distance away and who communicate to me through text messages,)  I forget that they just don't understand what I'm going through. Even though I've tried to explain it, and have asked them to read this blog along with  the comments and struggles of others on blogs like this, they seem to think all I need is a pep talk. 

There is a terrible story that has gone around for years where someone is trying to cheer up Mary Todd after the most horrendous thing happened in her life. A direct relative of hers told me this story so I feel at liberty to quote it here. The punch line was, as this "well meaning" yet ignorant person tried to console her, he said, "Well, apart from that, how did you like the play Mrs. Lincoln?" 

Sometimes I think my relatives have about as much sense when it comes to this horrendous thing in my life. 

I remember reading in a British publication a leading M.E. doctor saying "if my patient's families would understand that for most sufferers of M.E., both the symptoms and the reactions to the viruses raging in their bodies are worse than that which an AIDS patient experiences, they might get a clue."  I hate to quote that statement to my family, although I believe it to be true, because I try not to freak them out. 

On Ampligen, as others have documented, my symptoms  get worse before I get better. So this past week has been extremely difficult, with extreme flu-like symptoms, body aches, emotional roller coasters, migraines, stomach turbulence, and more. I don't know about you, but when I feel like that, simple motivational phrases and "positive thinking" is not going to do it for me. It's like passing a soldier bleeding on the side of a bombed out building in Iraq and telling him to "Cheer up! Think positive! The Army loves you." 

Then there are my Doctors here in the USA.  This week I also discovered what I had been reading about for years, but by reason of living outside the states, hadn't experienced first hand - the overworked, under-staffed,  barely competent office that is called a physician's "practice" or medical center here in this country. I won't use this space to express my amazement at the denegration of this industry. I'll just say to my fellow patients, in my view, you probably know more about this disease than they do. You probably are better suited to know what you need, through research and forums like this one, and listening to other patients, than you are trusting your physician to know what is best for you, and thinking he or she is "plugged in."  

It may not be their faults, personally, but in my opinion, they have neither the time nor finances to invest in maintaining their "edge" against this disease. They are so strapped for time and resources that they do not have room for reading basic journal reviews, dialogueing with other physicians,  or probing new solutions that other physicians are trying worldwide, They certainly don't spend any time doing the research that you and I do - and that to me is frightening. 

I won't even go into the way the office is "run", the lack of administrative cohesion, or the abject lack of professionalism from some of the office staff because Doctors are forced to hire essentially minimum hourly wage workers "off the street." One nurse told me that she was never even interviewed by the nursing service in person! Ever! They hired her by paperwork only. 

Other patients have warned me not to get distracted by these obvious problems, that really tend to scare you, so I try to just focus on my health, and just getting my Ampligen twice a week. But I will say, it still shocks me that no one in that office who swore the hippocratic oath, ever volunteers anything about my treatment, about what to expect, about the symptoms of my disease being attenuated by Ampligen and side effects I should anticipate.

It was through forums like this one and other patients that I found out I should probably try taking a saline infusion after the Ampligen. It was from another Doctor in town who has seen other Ampligen patients that I was told about getting magnesium in my saline, in order to help with the muscle pain. It was through another Doctor in L.A. that I learned that any immuno-modulator like Ampligen or Interferon messes with the serotonin in the brain.

When I experienced the depression trough that I posted about last week, and expressed that to my Doctor, his reaction was to take notes and say "mmm hmmm." No explantion, no recommendations, no comment whatsoever! 

Thankfully, from another PhD friend on another M.E. forum,  I had some explanation that made sense. This super guy told me: 

"Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body's plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation."

And from Dantzer and Kelley, 2006:

Cytokines “act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue…The fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimer’s disease to stroke…Indeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.”

Thank God for the Internet, and online Forum friends like him, for helping me understand what was going on in my body! Or for at least giving me a clue. 

Wouldn't it have been great for my Doctor to share a little tidbit like this with me? Forget the fact that he is my physician, wouldn't it be something a friend would want to share with me? 

So last week was, in a sense, my "Ford's Theater Revelation." I now know that people are insensitive about me and my affliction. OK, I get it.  I am here in this country for one thing, and one thing only- getting that amazing medicine called Ampligen in my veins twice a week. I am not expecting the physicians in the office to monitor me, inquire about me, or even care about my symptoms. I do not expect them to tell me in advance what I am about to experience, or offer counsel. I am thankful that my nurse, Gwen, is a sweetheart, and is a professional, and makes my treatments pleasant. 

I know that Ampligen is working, and I thank God for Hemispherx and the fact that this medicine exists.  That the FDA, the American medical system, the malpractice insurance rates, the inferior staffs, and the overworked, numb doctors and all the rest make the patient's journey such a challenge today, is a shame. That some of my closest relatives think that when I am down, sick and depressed because of chemicals raging, all I need is to read a motivational phrase from Dale Carnegie,  is not ideal. 

But now I know not to expect more from these folks. Like the guy in Ford's theater with Mary Todd, they haven't been through anything like this before, are at a loss for words, and really don't know what to say. I can accept that. 

But excuse me if to either groups, I choose sometimes not to take your calls. You don't understand, and sometimes there is nothing I can say to make you understand.

Ampligen, Serotonin and Anhedonia

"Depression is melancholy minus its charms." Susan Sontag

Treatment #9

 This past weekend was rough. After having 8 treatments of Ampligen over the past 4 weeks go so smoothly, I wasn't prepared for the surprise dark cloud that rolled over my horizon beginning Friday evening. Some would call it depression,  and I'm OK with that. But upon further research, I think the more appropriate term is "anhedonia." Let me explain. 

Starting late this past Friday afternoon, I began to sense an overall mental malaise come over me - a generalized anesthetizing lack of emotional feelings. This “vacuum” of emotions continued into Saturday, to the degree that I was no longer enjoying watching the Olympics on TV, was no longer interested in eating, and surprisingly for me, no longer even interested in sex. This was especially disconcerting due to the fact that my wife had just flown in from our home country, after having been away for the past 20 days. And what’s more, she looked great. I mean, really great, if you get my drift. 

Although my mind could process this fact empirically, neither my heart, nor my body would have any of it. It was as if something in my brain was “unplugged”, and nothing was reaching my heart. I had no appetite for anything, and ended up just laying on the couch, mindlessly clicking the TV, noticing that the only thing I could actually feel was a headache. And that made me frustrated, and that prompted my old friend, the “F-word” to come roaring back.

Of course, my wife responded appropriately, basically telling me that cursing at her was neither charming, or a good way to get romance. Well, you get how the weekend went, right? 

In a desperate attempt to figure out what the heck was going on with my brain chemistry or my body, I did what we’ve all learned to do in our situation, and went to the Internet for research. What I found jumped off the page at me on scores of reports.

It turns out that, when you read the journals and reports of other Ampligen patients, some from the 1990 original trials, and others in 1999 and beyond, you find this “emotional trough” hit many of them. Even more striking to me, upon reading these reports, was that almost to the person, this “cloud” of “blah” occurred almost exactly one month after beginning the Ampligen!

Friday marked the end of my first month. Ding!

I went on to do more research, and discovered that this is not a new thing for other immunomodulatory drugs. For example, if you search “interferon alpha” a standard anti-viral drug used to fight Hepatitis C and some cancers, you will see most of the reports citing this “depression” “irritability” and “anhedonia” that hits interferon patients- again, after the first month of treatment. The reason the drug does this, these Journal reports describe, is that the drug basically messes with the serotonin levels in the brain.

Because of the immune modulating properties of Ampligen, that I believe probably have affected my serotonin levels, what I felt this past weekend was likely best described as Anhedonia- which the medical dictionary defines as: “an inability to experience pleasure from normally pleasurable life events such as eating, exercise, social interaction or sexual activities.”

Whatever you want to call it, it was no fun. But surprisingly, as quickly as it arrived, like a Mid-Western downpour, the storm clouds pretty much blew away today. I received my usual infusion of Ampligen this morning, and as is typical after,  I feel some mild flu-like symptoms. But I do have an appetite again, had an animated conversation with my wife on the ride home, and am "feeling" things again. But I have to admit, I’m still sort of on guard. The speed with which the darkness came over me, and the lack of warning from either my doctor, or anything I had read to date, sort of shocked me.

I’m still not feeling very charming today, but we’ll see how the evening unfolds.

Your comments and questions as always are very valuable to me. Thanks!

Like One Too Many Coors Lights

Treatment #4

Today's Ampligen infusion marked the fourth and last treatment at the 200ml "adjustment" or acclimation dosage. I'm now into a quaisi-routine, arriving at the clinic around 9:30AM every Monday and Thursday morning, and the procedure goes amazingly fast. In less than 3 minutes Gwen has me hooked up to the drip bag with "miracle drug" coursing through my pipes, followed by a bag of saline solution. The entire process takes about an hour total. Starting with next Monday's I.V., I'll be ramping up to the full 400ml dose, which they'll infuse a little bit more slowly.

So what does it feel like? I'll break it down by time.

What Ampligen Feels Like the Day of the Treatment - Going into my veins, I feel absolutely nothing. I'm not cold, I'm not flushed, nada. Then, things start feeling pretty good! My appetite starts feeling restored during the treatment. I talk more. I also seem to be smarter! This may change starting next week, (when I double the amount of "juice" my body has to process), but based on the first two weeks, for the first few hours after the Ampligen, I actually get a little boost. Cognitively I feel more aware, I can drive without difficulty and math is easy for me. I talk on the phone with much more lucidity (in my view, and some friend's views as well). These are sort of empirical markers for me, because I can recall times when I would be behind the wheel and get lost in my own neighborhood, so bad would the memory and cognitive problems be. Last night in bed, I wrestled with something that was driving me crazy. Who was that portly actor who played the role of Perry Mason and Ironside on 70's TV? Today after my treatment, it was obvious--- Raymond Burr, of course!

What Ampligen Feels Like the Day After Treatment- By the end of the treatment day, the boost I described above has worn off, and I start to feel tired. By nightfall, my head hurts a little. Upon awakening the next day, I feel like I either am just getting over the flu, or that I went on a bender the night before. Not unlike the feeling many years ago when I was a teenager in college and enjoyed the "buzz" of a few too many Coors Light beers, only to pay for it with a throbbing head the next day, Ampligen the day after makes my body ache a little. Specifically, like with a mild case of the flu, my butt and leg muscles hurt, and I get a little testy. My wife already has "guaged" that it's better to have good conversations with me the day of my treatment, as opposed to the day after, because I will be much less patient the next day. But even with all this symptomology, I can say it's no worse than "crash days", and actually is sort of different. Unlike the disease, and it's horribly unpredictive symptoms, I can sort of "plan" on this headache and muscle pain, and deal with it. It also helps that I am firmly convinced that the Ampligen is actually helping my body.

What Ampligen Feels Like 48 Hours After Treatment- Two days after the infusion, I'm usually back to baseline. I was going to say "normal" but for patients like us, normal has a different meaning, right? (Besides, as Alfred Adler said, "The only normal people are the ones you don't know very well.") So let me put it this way. By the time 2-3 days have past, I'm actually starting to want the drug. My body has already found it to be a cooperative, helping friend, and it misses it. At this point, I'm finding the usual feelings of M.E. returning, my cognitive abilities dimishing, my stamina waning, and all the rest you are more than familiar with. Is it like being addicted to something? No, not at all. I just really, want the Ampligen, because I am convinced it is helping me.

Because today is Thursday, I now have to wait 4 days until my next infusion. But my father-in-law is coming to visit me on Sunday from out of town, specifically to watch the SuperBowl with me, and help me take my mind off my body. It will be fun to see him, fun to watch football with him, and of course, fun to watch him drink one or two too many Coors Lights!