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!

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Amped on Ampligen

Treatment #6

I promised I would tell the good, the bad and the ugly of this journey so today's post will have two out of the three Let me get the bad out of the way first,  because the most amazing thing happened to me after my last treatment I'm bursting to tell you about it.

First, let me set the stage. 

As my prior post indicated, I was expecting to feel the "bad" side effects of the full 400ml of Ampligen after my treatment on Monday, and as predicted, I did. By Monday night by glutes and legs were aching so much, I had to take three hot baths in the evening just to distract me from the extreme flu-like body-aching symptoms. Additionally, my left thigh muscle was twitching like it was hard wired to the electrical outlet for about 36 hours. It didn't keep from sleeping, but it was, quite frankly, a little weird. It seemed to be shaking my thigh at about 100 beats per minute, but not in rhythm or good timing, sort of like a bad 60's song like Inna Gadda da Vida. But knowing that Ampligen is an immune-modulator, and that most research shows a connection to the body's nervous system, I just decided to ignore it. By Tuesday afternoon it had pretty much subsided.

But the greatest news was what happened on Wednesday. Now two days after the Ampligen had been in my system, I woke up normally, did my usual 20 minutes of light exercise, and decided at exactly 11:00AM that I had enough energy to get a haircut. The haircut took way longer than I would have liked, but incredibly, I was neither impatient about the delay, nor in any pain after sitting in that chair from hell main of imported Danish wood! It was 1:00PM, I had no headache, I had no muscle aches, and I still had energy. Now THIS was something! Very rare for me.

So I decided to push it- to test the waters so to speak. "Let's see if this Ampligen stuff is really making a difference" I said to myself. So I called a car dealer with whom I had spoken earlier in the week about "maybe coming out to test drive a used car" and told her "I'm coming."

Now here's the amazing part. For me,over the past many years,  just the thought of buying a used car would have been too much to even process mentally. Knowing that it would involve not only the decision about the car itself, but also endless paperwork and brain-energy to get it licensed, titled, insured, inspected, etc. would have sent me over the edge. But yesterday, as I drove to the car lot, I found myself feeling something strange; something I hadn't felt in a very long time... peace.

Exactly ninety minutes after I had arrived, I kid you not, I was driving my "new" used car off the lot! Complete with plates, title, registration, and car insurance! This was even more astounding to me because I have not lived in the USA for 7 years and had NO car insurance in this country. But I have to give kudos to CARMAX, they really make it easy for the neophyte to get through this paperwork easily.

What I really had to say to my friends and family after I got home was, I have to give credit to the Ampligen.  I could actually feel my "old self" returning for a few hours yesterday- cognitively, physically, emotionally, and even in the humor department. It was as if this drug was restoring my personality as it restored my body. One of my business partners of over 20 years actually commented and said, "you sound like the medicine is working!"

Now as I write this laying on my bed with my laptop warming my thighs, I'm getting ready for the side-effects of the treatment I just had this morning. But I'm smiling, thinking about my new car, glad I'm not paying for taxi fare to and from the clinic, and almost looking forward to Inna Gadda da Vida playing on my leg.

I am now "amped on Ampligen," and I like it.

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Ampligen - Double the Dose Double the Redundancy

Treatment #5

Today's infusion took longer than any prior, because they doubled my dose. As promised, my Ampligen quantity was upped from 200ml to 400ml, which veterans tell me is the "full dose." So as not to stress or shock the body with the increased chemical or the quantity of fluid going into my arm, Gwen reduced the drip rate to about 70 minutes in total. That was followed up with a bag of saline, so I was sitting in that chair for about an hour and a half.

This morning there were three of us all getting the "juice" along with two or three nurses. One of the reasons that Gwen or a nurse stays with us at all times is precisely for that reason- to monitor and adjust the drip rate in order to conform to a predetermined speed. For example, today Gwen said my BP was a little high, which corresponded to my being a little nervous when I arrived. As a result, both nurses told me that they would have to "open up" the valve to help the Ampligen flow correctly- because higher blood pressure, stress, anxiety and a variety of other seemingly unrelated factors can affect one's veins, and their ability to accept an infusion drip.

Today Gwen must have adjusted that drip rate a half dozen times. Once I settled into my chair after about five minutes, she actually said "whoa, cowboy, I need to slow that baby down. You've really relaxed." I asked her what that meant and she showed me how the drops in the bottle were moving at like two per second- too fast. "It's very normal after you get relaxed for your veins to open up" she said. "And you have killer veins," she noted.

Normally I'll take any compliment directed my way, so few did I receive as a child raised by parents who read Dr. Spock. But lately, as I've been humbled by this disease, I've recognized that everything I have is a gift from God, and He made not only my big veins, but my big nose, my big feet, my big belly, and pretty much everything else that is big on my body. So I just smiled and said sincerely, "Thank God."

The reason that these "big veins" are worthy of thanksgiving is, some patients aren't blessed with visible arteries at all, and the job the nurse or doctor must go through to both find the vein, and get the flow, can be arduous if not sometimes impossible. I kid you not, one sweet patient who I met with baby-like skin told me that sometimes on rare occasion it has taken as many as SIX attempts. But my experience is almost always, first time is a charm.

I talked to my Doctor briefly after the infusion and he said "Now be sure you get horizontal, take it easy today, because you'll probably feel a few side effects, and tomorrow, you'll be good as new!" Did I mention in previous posts that my precious Doctor has a very positive, upbeat personality, with a contagious grin? I personally am a guy who responds well to that kind of motivation, but I also know that if he casually mentions "a few side effects" that it probably means the "caca" is going to hit the fan! (Please excuse my Spanish.) Like the Brits in WWII who called the bombing of London a "very illuminating fireworks display," these undersold comments of his usually forewarn of something potentially bigger than the soft words indicate, so I've been on guard ever since.

In reality, it hasn't been bad today. Yes, I do feel the larger dose of Ampligen producing more side effects today. They include:

• A twitching in my left leg near the sciatic nerve;
• A slightly sore back near where my kidneys are;
• Mild ringing in the ears;
• Sort of a spaced out head.

It's the last one that is most noticeably unique. I've had twitches and sore parts of my body before... but this cognitive fuzziness I feel today is new, and different. It's not that I can't think- I'm doing fine typing and expressing my thoughts on this blog. It's that it is taking me just a little longer, and when it comes to verbal skills, let me just say I can tell today I am no Christopher Hitchens or Peggy Noonan. I'm also finding myself being redundant. I'm no Peggy Noonan that's for sure! (OK, I'm joking now, but it is true!)

For example, I just met a neighbor outside and I said: "Hey, how ya doin?" He replied, "great, and you?" Here was my answer, verbatim: "Good, thanks! And you?" He sort of smiled, and when I realized my redundancy I said, "I guess I asked you that already, didn't I?" He was a good sport, and said, "Yeah, but I'll tell you again anyway, I'm still great!"

So double the dose, double the side effects, but none that I can't handle. And if my personal motivation champion aka my Doctor is correct, well then tomorrow I'll be "good as new!"

Did I mention that already?

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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!

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My Ampligen Treatment Begins

Treatment #1

The adventure begins.

I arrived at the Doctor's office a few minutes late because of bad planning on my part, so I was a little stressed to begin with. It took them about a minute to get me set up in a nice reclining chair in the "infusion room" and when Gwen took my routine vital signs (blood pressure, and pulse) she commented: "So, you're a little excited today, eh?" and smiled. Apparently my BP was a little high, but her attitude mitigated my need to ask further questions, or do my usual "journalistic interrogation."

Gwen, the nurse practitioner who actually does the infusions, calmly went over the procedure, explaining how the first couple times they were going to give me less than the full 400ml of the "drug", and work up slowly. Today's infusion was going to be 200ml, dripped at a relatively slow rate which would take 60 minutes. Gwen explained that soon I'd be up to 400ml and it would only take 30 minutes.

The cool thing was, both for protocol purposes, and because this office is very patient-centric, Gwen stayed with me in the room the whole time. I"m sure as "the new guy" they wanted to see if I'd react negatively to the drug immediately, or display any side-effects. She also mentioned that some people get quesey just with the idea of a needle going into their vein. It turns out someone did-and almost fainted! But it wasn't me.

For the purpose of this blog, I had asked my precious wife to grab my camera and take a couple shots. Bad idea. She hates blood and needles, and actually had to leave the room right after the photo above was taken.

As soon as the infusion began the Doctor came in, jolly as ever, more enthusiastic than the late Chris Farley's version of a motivational speaker dropped into your living room.

"Hey guy! How ya doin' today?" the doctor beamed. But unlike the fictional "Matt Foley," this positive personality was for real, and from the heart. One of the things that prompted me to finally come to this town and start this treatment was the Doctor himself, who genuinely loves to help people, and takes time with his patients.

After chatting a while, I noticed that he was also, very subtly, checking my body out very passively for who knows what. He looked at my arm, the bottle, the drip rate, never breaking stride or stopping talking, all very calmly. But my mind started to race. "What is it he's looking for?" I thought to myself. "A rash on my skin? Blood coming out of my ears? An extra nose spontaneously growing out of my face?" When the Doctor said "OK, you're looking good. Talk to you later!" I figured that things were going as planned.

Exactly as Gwen had predicted, 60 minutes almost to the second after we started, the Ampligen bottle had been emptied into my vein. "Do you sense anything different, any side effects at all?" she asked.

"No, except I feel like sneezing" I said. "And my eyes itch."

"Well, I'll need to write that down." Gwen responded.

"Wait!" I said, remembering the last time I had given my Doctor a hug. "He has cats! I'm allergic to cats, and I just rubbed my eyes after shaking the Doctor's hand!" I said.

"Well, that's not the Ampligen" she replied, smiling. That's those felines he loves so much. Here's a tissue."

Exactly 90 minutes after arriving, my wife and I were leaving the office, me feeling no different than when I first arrived. She on the other hand, was still sort of pale looking, and said "I never want to see them sticking your vein again. I almost fainted. Sorry honey."

So after 1 treatment, I can say that so far, so good. And if the only side effect of getting this infusion is it makes my wife quesey, I can live with that!

In future or separate posts I'll include details about the first 5 weeks leading up to this day, the blood tests and paperwork and interminable waiting that is required to get Hemispherx, the maker of Ampligen, off their asses. But because I wanted this blog to be very specific about the treatment itself, I decided to start the story concurrent with the first infusion.

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