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Showing posts with label ampligen treatment. Show all posts
Showing posts with label ampligen treatment. Show all posts

Read the Fine Print

With my nose completely shut due to allergies, out of desperation the other day I took an OTC antihistamine. It was Italian day at lunch and I had grown weary of not tasting any of my food, so ignoring the instruction panel I ripped open the package where the headline read "Daytime Safe Formula" and took the tiny white tablet without even a glance at the label. Big mistake.

Exactly twenty minutes later, with my eyelids heavier than concrete and ravioli dripping from my chin,  I lifted my weary, sleepy head out of my plate, and with all the effort I could muster, focused a magnifying glass on the small print on the side of the box and read to my dismay: "Warning: May cause drowsiness.

"Whaaat?" I said to myself, "this is supposed to be 'Daytime Safe'!  Safe for what - outpatient surgery? I felt like I had been shot with an elephant dart full of thorazine, and in tiny 4-point helvetica type they whisper "may cause drowsiness?"  Whatever that stuff was, in my view it would have been much more honest to reverse the whole thing, and label it a "Guaranteed to Put You To Sleep Medicine" with a smaller mention of "May also help control your allergies."  

Regardless of the intent, the combination of the misleading package headline and the small print on the instructions ended up costing me a half day of cogent thinking, as I sleep-walked through the remainder of the day. 

It could have been worse. Some of the newer drugs advertised on television really scare me. Have you seen any of these commercials? Thanks to recent regulations,  when a drug manufacturer advertises on TV they can't hide the fine print like they do on packaging, because the FDA makes them actually say all the ugly stuff on TV.

For example, there's a new weight-loss drug by Glaxo Smith Kline promoted on TV  called "Alli." On the shelf in the drug store, you might be drawn to it. The box is cute, with rainbow colored lettering, all very easy to read and "safe-looking." The TV commercial has skinny people frolicking in a field, wearing all white.

But on TV, they are mandated to say all the fine print that you wouldn't normally read, and it's pretty hilarious, if not frightening. 

"Side effects to Alli include gas with oily spotting, loose stools, more frequent stools, and stools that are hard to control." 

I don't know about you, but no matter how much weight I lose, I've always found it difficult to look svelte when the gas I pass leaves an oily spot.  And I'm thinking the last thing I'm wearing when I take Alli is white pants.

I'm serious. This is not hyperbole. Here are a couple more:

Requip - a dopamine drug to counteract tremors: "side effects include an unusual urge to gamble and increased sexual urges and behaviours." 

So it's either the shakes, or I turn into Hunter S. Thompson? That doesn't sound like a good deal to me.

Accutane - an acne medication: "side effects include crying spells, rectal bleeding, and bone fractures." 

Now I may not remember all the details of my adolescence, but I'm pretty sure at age 14 that I probably would have learned to live with that pimple on my nose, if it meant walking my clean, acne-free face around high school with a broken leg in a cast.  And yes, I admit it,  macho-boy not withstanding, I would definitely be in tears, crying my eyes out,  if I put the cream on my face and my butt started bleeding!  Who wouldn't at age 14?

Reading the fine print is even more important for us fighting this disease, because research has shown that with our immune systems in overdrive, or out of whack, our bodies often react quicker, or more strongly, to published doses.

We also sometimes react to other people, or other circumstances, differently, or more strongly as well. That's because our Central Nervous System is under attack, and our "senses" are often attenuated.

Yesterday a woman at the gym had her personal aerobics CD blaring from her iPod, not using her ear buds as is the policy, so I was forced to listen to what for me was like nails on a chalkboard. It wasn't the oldies music so much that I minded, but the invasion into my brain of the super-animated Richard Simmon's voice, urging me to "Come on!" a dozen times per minute. 

When I asked her to use her earphones "please!" she surprised me by saying "there's just two of us here, it's not that loud." 

I couldn't believe it. My ears were ringing, and she thinks it's "not that loud?" Right then my wife arrived and I thought I'd get reinforcements. As she got on the treadmill I asked her if the noise bothered her, and to my surprise and dismay she said, "no, not really. It's not that loud."

Not that loud? To me it felt like Richard Simmons himself had taken up residency in my gym shorts, and had placed a megaphone an inch from my face screaming.  At that moment I saw myself in the wall to wall mirror, with my eyes dilating, my brow furrowing, and the anger starting to rise.

These were the "side effects" of the disease I battle, the "fine print" about my health that most people didn't see or discover until something like the Richard Simmons episode ignited them, or revealed them. 

Sometimes I can feel my heartbeat increase, and blood pressure rise.  Other times I can feel the weight of a dark cloud. If I'm fortunate enough to be near a mirror, one sign that many of my doctors have confirmed is pupil dilation.

My wife has gotten used to these "side effects" and often snaps me out of them with focused little comments like "your eyes are dilating again" or "you look like every orifice in your body is about ready to burst." 

That last one usually does the trick, because I can actually picture the scene. It always starts with me frolicking in a field, wearing all white.





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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.


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My Peter Falk View of Ampligen

Treatment #7

I don't want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning's Ampligen infusion would simply be "speed." Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got the whole 400ml into my veins in less than 35 minutes. Including taking my vital signs, charting my progress, and the rest, the entire process took no more than an hour this morning! And it felt no different than when it was going in slower last week, thank God.

Many have asked about the financial aspects of my decision to come to this country to start the Ampligen treatment, so I'll jump to that now.

Are you the kind of person who likes to yank a band-aid off quickly, and get the pain over with? If so you won't be quite as shocked with what I'm about to tell you. This decision cost me big time. I won't go into the intangible costs to family, business, and one's psyche, because the money alone is enough to drive you to your knees and ask "Are you sure, God?" There is a page on Wellsphere that talks about the "Ampligen Cost Recovery Program" and features some of the Doctors in the USA and Europe that offer it, but let me cut to the chase. I calculated that I would need $50,000 to come here and live for 6 months, pay for the Ampligen itself, as well as the clinic fees.

Gives new meaning to the term "recovery", no? You may be saying to yourself, "Well, I don't have a spare $50K lying around!" And neither did I. But over the past 5 years, the more I deteriorated in measurable, noticeable ways (see my previous posts)  the more I began to have a subtle change in my mindset. A change that got me to the place where the money, while outrageous, was still something I could get over. Or, better said, something I could figure out.

In a word, the sicker I got, the more I started thinking about survival. In a 5 year period I had gone from being frustrated with my decreasing, reduced lifestyle, to actually being concerned about my life in general.  

You know we are all great at coping and convincing ourselves that we can get along with all these horrible symptoms, and I was probably the "king" of denial in that regard.  And because I had jobs and people I was responsible for, and no bank account with $50,000 just sitting there, for 5 years I basically just, well, gutted it out. Thinking all the while that a half-assed me was OK. That me in pain, working part time, was alright.

But then one day, these subtle nudges came to a head, and I realized the truth. I was seriously going downhill. I wasn't even able to work part-time very well at all. It was during a Christmas celebration in 2008, when I couldn't even sing one Christmas carol, so excruciating was the pain in my head, that I snapped. On that day, something clicked. I decided that my life was at stake, and that in survival mode, you do anything and everything to live. Including giving up dreams,  moving 10,000 kilometers away, and even selling things or taking out a loan if I had to.

On our ride back to our apartment after the event, still in agony, I cursed, screamed, and pounded the dashboard. I cried and said to my wife, "I'm not sure I can do this anymore!" Steady, solid woman that she is, she calmly said, "well let's pray, and then let's figure out what to do so you can." 

There is a great line in the classic 1979 movie "The In-Laws" where Peter Falk, a CIA guy, is explaining his job to Alan Arkin. "Yes, being a spy is dangerous" he says, "but the CIA has a great benefits program. Of course, the secret to the benefits plan is not dying."

The change in my mindset that Christmas day allowed me to actually consider radically upturning and changing not only my life, but that of my family and friends as well. It was a mindset that went from "surviving this sick life" to "fighting for my life." And at that moment, to be honest, the money didn't seem so important. You see, as Peter Falk pointed out, if you're dead, it just doesn't matter.

Once I had my "head-game" fixed, it was relatively easy. I recalled, like most people my age, that I had done these crazy financially "unsound" types of things before...when I started more than one business from scratch; when I left home at age 17 to follow my career dreams as a youth; when I worked three jobs to pay for my daughter's education. I had sacrificed before, and it always worked out. Besides, I figured if I was healthy, I could make that $50K back in about a year, if I stayed in the USA. "But the key was not dying."

Do I think the medical system in the USA and other countries is whacked out? Yes. Would I feel comfortable telling anyone that a bottle of Ampligen costs $1200 a pop? No. Most wouldn't understand. Although the fact is, in comparison to HIV and AIDS medication it's cheap.

But do I gladly pay this money, until such time as it is officially approved, and do I thank God for Hemispherx and Dr. Carter and this amazing drug?  Absolutely. Like the CIA, it's not perfect. But once you decide about the "not dying" part,  the benefits are great.
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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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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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