New Treatment Ways: March 2010

The Process of Change

A cold and rainy weekend in March in New England provides us the opportunity to consider the process of change.
In nature, change never happens in a straight line. The seasons do not move from winter to spring through each day being one degree warmer than the day before. Instead, we have a warm day, and we notice buds on a tree. Then it snows. The crocuses come up, then the temperature drops and we wonder if they will survive. It’s very cold and raw, yet we see some skunk cabbage by the side of a river. We get discouraged, and say things to each other like "I am so done with winter. Is it ever going to warm up?"

Yet if we compare May to February, everything is different.

In February, if it is 45 degrees, we say: "A warm spell!!"

In May, if it is 45 degrees we say: "It is so cold!"

The parallels with our work are obvious. The children don’t get better each day in a clear progression. One day, Juan responds with kindness when another boy is upset. Staff make hopeful remarks to each other. The next day, Juan says something very mean to that same boy. Staff feel hopeless. Marcie has not had a restraint in months- maybe she is changing? Then she does and all feels lost.

Yet often when we compare this month to last year at this time, Marcie is substantially different. She is going to school and doing her work, and has not hit anyone in months.

We loose track of these changes. Now we complain with great intensity that Marcie is using a sarcastic tone when she speaks to us- forgetting that a year ago she would have hit us.

We have to learn to look for the snow drop in the snow, the red buds on the spring trees in the cold. Let’s rejoice in the warm day and point out the yellow willow to each other. When we see the small yet certain signs of change, we will have the strength to hang on through the raw days. Remembering to notice changes over time will help us celebrate the miraculous transformation we help our children achieve.

Mopping up After the Roller Coaster Ride

I overdid it this past weekend, and paid for it on Sunday. Nothing about this disease is predictable, except the unpredictability of it I guess, but I was feeling so good after Treatment #18 I actually got suckered into thinking I was "normal" last week. Big mistake. Talk about a roller coaster ride!

When I was young I lived in Southern California and loved going to the theme parks in and around Los Angeles. My favorites were the roller coasters and one day, a new bigger, badder, more bodacious one opened up at Magic Mountain that I just had to try. It had some fantastic official name but the workers there just called it simply "the puker." Of course that made me want to ride it all the more, until while in line to get on, I noticed two workers standing at the ready with mops and buckets. I kid you not - this roller coaster was so hair-raising that they had two permanent workers who mopped up vomit as the coaster returned to base! That was their job, every 2 minutes as the cars came back, to clean up the mess.

I wouldn't have believed it had I not seen it with my own eyes... but sure enough, as the lead car came to its screeching halt after 75 seconds of full throttle g-forces, the teenage girl sitting in the front let her lunch fly and these two guys were cleaning it up faster than you could say "exit to your right."

As I loaded the same car the puker had just left, with the smell still in the air, I asked one of the guys with the mops "What makes people throw up like that, the altitude, or the speed?"

He answered matter of factly: "Neither. It's usually the abrupt stop. You go from 60 mph to zero and your lunch is still catching up with you. It's not that bad, really" he went on, "we just mop up the mess after people enjoy the ride."

I should have remembered the mop guy's words this weekend. Other patients who have been on Ampligen have warned me about this - that sometimes you can get such a short-term "boost" from this amazing drug that you'll start to think you are "healed" too early, and start going to fast too quickly. They've all told me that the real progress happens after the fourth month, but here I was this past week barely marking two months treatment, and I felt so good that I started filling my calendar up for the weekend. Can you imagine? Stupid, I know. But I had been hoping for this kind of energy for so long, I let my enthusiasm overtake my wisdom.

Coming off my Ampligen drip last Thursday, I felt really energized, so I recklessly attacked life with gusto. Between Thursday night and Friday noon I had long phone conversations with no less than 8 friends and relatives on 3 continents, in 2 languages. I did extra time in the gym, followed by an hour's deep tissue massage. My brain was working so well I spent a couple hours rehearsing a Supertramp chord progression in my head in bed instead of sleeping. Next morning I went shopping at a local mall, listened to a Czech opera conductor play Gershwin on the baby grand in Nordstrom's and then came home and worked on my taxes! Can you believe it? Still on this "high," on Sunday I took a friend with me to church, (a baptist-style congregation where the music is so good it is impossible to sit for very long) and then got a haircut. I was intending to write this blog after that, but then incredibly, the ride came to a sad, abrupt halt.

Like the speed brakes on a roller coaster at Magic Mountain, I hit the wall. I decelerated from 100mph to zero in the blink of an eye. My stomach ached. I dropped the hairbrush, and dropped my pants.

In less than 2 minutes, I went from admiring my new haircut in the mirror, to sitting on the toilet with abdominal cramps. Not only did my glute and leg muscles hurt, but my bones hurt too. My head was throbbing, my neck ached, and in all seriousness, it even felt like my teeth hurt. The ringing in my ears and the overall malaise confirmed it - I was crashing big time. It was shocking how quickly things turned south. From soaring at light-speed with my hands in the air, to squatting over the commode with my hands holding my head, in just a few minutes time.

At first I tried to go through the usual denial mechanisms we all use, like telling myself all I needed was some dinner. But when I couldn't get up the energy to find my glasses to read the dials on that fricking chinese GE oven with the tiny little numbers on those infernal tiny little dials, I realized I was toast; so I just plopped down on the sofa. For a moment, in complete denial, I thought of getting up and trying to distract myself by writing this blog. Ridiculous. Had I done so it would have looked like this: "*@$&^%##@^$*&$@_)_**^)(&@*!!!!!!!"

Then the downward spiral of interconnected reactions set in, and I had a real, bona fide crash.

You know what I mean, right? After the physical symptoms rear their ugly heads, the other ancillary parts of our "being" feel the need to participate. So next, my emotions got involved, in the form of anger about the fact that I was on the couch again. Then the concomitant sadness that usually follows anger kicked in, which made me feel even sicker. Followed by its ugly twin, "guilt," beating me up mentally with the refrain "How could I have been so stupid?"

If that wasn't enough, a thunderstorm rolled in, dropping the barometric pressure like a stone, and with it, my quickly souring disposition. Yes, barometric pressure changes do affect people with viral challenges like myalgic encephalomyelitis, usually in a bad way. So with no "joy endorphins" firing, and whacked out serotonin, dopamine or whatever the gamut of emotional brain chemicals are, my physical aches and pains felt even worse.

To say I was "down" would have been an understatement, but I had one glimmer of light at the end of the tunnel - hope.

Jean Kerr says "Hope is the feeling that the feeling you have isn't permanent," and I had that definition of hope in two ways.

First, because I know God didn't bring me halfway around the world to come to this town to not get healed, I had this deep settled confidence that this was just a bump in the road, and it would pass. Because I believe in God and in His plans for my future, I can look at bad days in the framework of eternity.

Second, I had hope because I knew something about what was coming.

Even though I was on the couch, mindlessly surfing cable channels, I knew if I could get through the night, things would be better tomorrow. Not just because it would be a new day. Not just because the night was over. But because tomorrow morning, I was scheduled for my regular Monday morning infusion of this amazing drug called Ampligen.

Having been here now on this chemical for 2 months, I knew that it worked, and that it worked fast. So I actually slept a few hours last night, on the hope of this morning's treatment, and the relief it would provide. And that's the amazing part - it worked even faster than I had hoped!

Before the first 100ml of Treatment #19 had been dripped into my veins this morning, I actually felt better. More accurately, as incredible as this may sound, as the first 100ml was entering my veins, I could feel myself get progressively better! I could discern the body aches diminishing; I started conversing with the nurses and patients, and I found my sense of humor returning. By the time all 400ml was in, and the saline and magnesium were finished, I was completely pain free.

I was stupid this weekend, without a doubt. I went to far, too fast. But thankfully, I had Ampligen today to mop up the mess I had made after my ride.

Make Up Tip: Get Full Sensuous Lips

Here are a couple easy tips on how to get your lips to look fuller * apply highlighter or balm into a bow of your upper lip and into the corners of the mouth. This will make your lips stand out and look fuller * a little secret, if you have thin lips you may prefer to use a pencil with a bit dull tip to line them. Hard thin edges make lips look smaller. Or just make sure to blend your lip liner.*

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.

Beauty Talk: Cellulite Treatments

Before reading this post you may want to read about cellulite and its causes in my previous post. So now let's bring out the weapon! What Cellulite Treatments are out there to help us?The bad news is that some dermatologists say that there is no treatment for cellulite. Ok... ok! You cannot treat it completely but you can at least improve condition and the overall look of your skin. Let’s see how

Emotional Intelligence and Trauma

I have just returned from the National Council annual conference. It was an excellent conference, very large. I enjoyed the keynote speakers especially: Howard Dean, Malcolm Gladwell, Geoffrey Canada, Lee Cokerell from Disney and others.

I attended a workshop given by Dr. Hendrie Weisinger about emotional intelligence at work. He quoted research that shows that emotional intelligence correlates much more highly with having a good life than any other measure, including IQ. He described the problems that bring people to therapy as failures in emotional intelligence. Therefore, we should be more deliberate in teaching EI skills to our clients. So, I wondered how the ideas of emotional intelligence interacted with our ideas about trauma.

Dr. Weisinger listed five key skills in emotional intelligence. They are:
1. Self awareness- processing information about yourself
2. Mood management- how quickly can you change your moods?
3. Self motivation- how can you get yourself to do things you don’t want to do
4. Interpersonal expertise-Build consensus, handle conflict, accept feed back, etc. Effectiveness in interpersonal emotional situations
5. Emotional mentoring

Self awareness is the key skill that is the foundation for all others- how can you be emotionally aware of others unless you are aware of yourself? This of course correlates with the skills of feelings management. I remember at the Bessel van der Kolk conference seeing evidence that the part of the brain that provides self awareness and self reflection is under developed in survivors of trauma.

In Risking Connection® training we read a letter written by a woman who grew up in the child welfare system. She describes eloquently how her repeated moves and continual re-defining by various families resulted in her not developing a sense of who she was and what her characteristics were. In short, she had no continuous self narrative.

So if self awareness is a key skill of a happy life and our clients are impaired in this area, what should we do? We should be consciously creating a narrative with the client. We should teach them self observation, including how to notice emotions in their bodies, patterns about themselves, awareness of their own strengths and weakness, a sense of their own skills and interests.

Mood management is also a key area of difficulty for our clients. Too much of their behavior is mood dependent- the child wants to be a lawyer, but because she discovered a stain on her shirt she is dropping out of school. At first we may have to support, cajole and help the kids in learning how to change their moods and to get through them without derailing. Hopefully they will improve in doing this on their own once they experience that it is possible.

Self motivation is another hard one. How do you get yourself to do things you don’t like to do? I usually promise myself a reward when it’s finished. Also, I picture other people who will be pleased. So I guess inner connection comes in here- being able to hold the awareness of someone who cares what you do, even when they are not physically present to help you complete the task. If we say to a child, let me know how that turns out, I will be waiting to hear from you, we are developing this skill.

Interpersonal expertise- how to defuse situations, handle conflict, work through differences, build consensus, accept feed back- of course this is a focus of much of our efforts. The Dialectical Behavioral Therapy skills manual by Marcia Linehan offers one excellent curriculum for teaching these skills.

Emotional mentoring means teaching others- and actually, we do see these among our clients when one gives another good advice. We can encourage this.

Strategies that Dr. Weisinger gave included:

1. Learn to listen to how you talk to yourself. Five minutes 3X/day listen to what you are saying to yourself- change your self talk
2. Write down three statements on a card that put you in a good mood, keep it handy
3. Use emotional self instruction. Create a learning aid. What would you want “Little You” to be whispering in your ear to help you manage the situation. Remind yourself that you have options.
4. Praise- write down behaviors you want more of in others, then praise when you see them (Imagine if we taught kids to do this with staff?)
5. Physical arousal- learn how to physically relax. Learn to notice when you are tense. Tension and relaxation exercise. Four components of relaxation exercise: Quiet environment; physically comfortable position; key image or phrase; passive attitude. (the quiet environment is hard to come by in some of our programs.)
6. Humor 10-14 good laughs a day- Get staff and kids together and have joke sessions
7. Can change our responses to difficult situations- the real problem is my own response. Then you can do something about it

It would be interesting to incorporate some of these strategies into our work.

Feeling the Wind on My Face Again

Treatment #16

Today was the best day I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn't be happier.

What was my secret? Of course by reason of the title of my blog, I'll start with the Ampligen. I am now in my 8th week of treatment and although I had some dramatic and noticeable improvements my first few weeks, lately those had sort of tapered off. But suddenly, this week, I noticed a new area of improvement in my health that many told me wouldn't be reached until the 4th month - that of my brain.

The reason that this disease in most countries (outside the USA) is called Myalgic Encephalomyelitis, or other variations of that theme, is because the virus finds a way into our cerebro-spinal fluid, and as the name suggests etymologically, gives us "a pain in the head." But it's not just pain we fight - it's the cognitive difficulties, emotional challenges, and lateral affects to other organs that are controlled by the brain, that give us the most trouble.

It's like having a car built after the year 1999, with a "chip" in the engine that is bad. You could literally baby that car - change your oil every 3000 miles, wash the inside and out every week, do all the scheduled maintenance, and keep it in the garage at night- but if the "brain" called the electronic chip is bad, you've got problems. The engine might be flooding because the "brain" is sending the wrong signal, not because the carburetor needs replacing.

If you have an honest mechanic, he'll tell you: "your chip is bad" and save you a lot of time and money. Get a crooked one, or an ignorant one, and you'll spend thousands of dollars trying to "tune up" an engine that is perfect, never really fixing the problem - the chip.

You see, its not that our muscles were made poorly, or that we are lazy, or "always fatigued" and need more rest than others. In reality our bodies are probably stronger than most. The fact is our brains have an invader that is causing all sorts of problems, and our "engines" might be getting some distorted signals. Which could also compound problems with our "transmissions" and "drive-train" and "steering", if you get my metaphor. It's what my friend Dr. Jay Goldstein called "Betrayal by the Brain."

Don't get me wrong here. Please, I am NOT saying "It's all in our heads." Yes, I do have real muscle aches. Yes, I did see my energy and endurance go downhill. Yes I did have very real migraine headaches, ringing in my ears, lesions in my throat and on my arms, hypogonadism, stomach problems, and more - all very real physical manifestations of this disease. But I also had short-term memory loss, cognitive difficulties, and depression. I know this because I was forgetting names of life-long friends, losing track of my glasses that were on the top of my head at least once a day, and as my wife would tell you, starting to use the "f" word in two languages as an adjective - long before I started watching "Dog the Bounty Hunter."

So today, when I had a 2-hour spirited conversation with my Pastor over coffee, one of the most brilliant men and minds I've ever had the privilege to know, and not only kept up with him, but had fun, it hit me. "I felt normal for those 2 hours!"

How long has it been since you felt "normal" cognitively? For me it's been quite a while. So the Ampligen is definitely working on my brain now, and I couldn't be happier. But I don't think it was the Ampligen alone.

Two other ingredients came together this week which I think also contributed to some "chip adjustments" in my cerebellum:

I made some progress with my neuro therapy. Perhaps you've seen Dr. Amen on TV in the USA, or have heard about this. I'll post more in later blogs, but in short, Quantitative EEG and neurofeedback has been proven to enhance the healing of the brain and CNS in CFS patients. When the CFIDS Association was first formed like 20 years ago, there were three main doctors who they brought together to start researching those patients with a "mysterious viral illness." Two (Cheney and Lapp) did the medical side of the research. The third worked on the brain. She (Dr. Myra Preston) proved that Ampligen was fixing the brain, and by adding the neurotherapy, improved Ampligen's results.

I socialized more. This might seem counter-intuitive, because usually my habit when I feel sick is go introverted, and not talk to anyone. But another patient friend of mine kind of scolded me for "being on the computer too much" and "not getting out" so I gave it a shot. I spent 35 minutes at a local art museum talking to strangers about a sculpture that looked to me like a placenta, but which they thought held the key to the universe. I had coffee, as I mentioned, with my Pastor. I called some old friends on the phone. I played the piano for some strangers in the lobby of my building. I made a good friend laugh.

Now I admit, I'm getting pretty tired now. This old car needs to go back in the garage and rest for the evening. So I still have a way to go.

But friends, for two hours this morning, I tasted the joy again. I felt the purr of my engine. I sensed the wind on my face, and I remembered what a 350 cubic inch engine with a 4-barrel carburetor could do. And it was heaven.

Beauty Review: La Prairie Light Fantastic Cellular Concealing Brightening Eye Treatment

Promise (laprairie.com): ...refreshes and illuminates your eye zone while concealing imperfections such as puffiness and dark under-eye circles...Product Profile in Short (laprairie.com): Combining both cosmetic and skincare properties, it effectively minimizes signs of aging, such as fine lines and wrinkles, while adding a touch of radiance.Contains: Ginseng Root Ectract, Papaya Extract,

Weed Killer Turns Male Frogs into Females

Treatments #14 and #15

I'll get to the weed-killer analogy quickly. But first, allow me a little celebration- today marks my eighth week on Ampligen, and I've now officially entered the "plateau" phase of my treatment. Whereas at first I was seeing almost weekly improvements in things like my sleep, appetite, and other empirical data (see previous posts) now there really is nothing new to report. My doctors and nurse, as well as other patients, have all told me that the next "bump" in dramatic improvement will come as enter the 4th month of treatment - so now I just have to be patient.

Yet although there are not as many visible manifestations, from what I've read, apparently the twice-weekly Ampligen infusion is still silently, secretly, doing its two main jobs:

Up-regulating or down-regulating, as needed, an enzyme called the "2 ,5 oligoadenylate synthetase/RNase L (2-5A synthetase/RNase L) pathway", and;

Up-regulating or down-regulating the "P68 protein kinase" pathway.

I flunked out of chemistry in College, so these words of course teach me about as much as I would learn if I was reading the phone directory from Lisboa, in native Portuguese. But thanks to the Internet, I discovered more about how and why Ampligen is working for me.

Some viruses, such as M.E., HIV, Herpes, and HBV overcome intracellular immunity by producing substances that deactivate RNase-L, thereby allowing the virus to multiply freely within the intracellular environment and clinical deterioration occurs. Think of that. Virus cells have been multiplying in my body at will. Scary thought. But Ampligen helps our bodies restore the enzymes that help control the uninhibited growth of some of these viruses.

Think of planting a lawn. In many parts of the world you can buy seed that has a built in "inoculator" that keeps nitrogen up, and as a result, weeds from growing around it. It's just an enzyme or bath that they soak the seed in, and it works! I've personally planted alfalfa in desert climates that had this inoculant, and it was perfect. Best of all, every season it came back stronger than before!

Now, if that seed is left in the sun before planting however, and that inoculation enzyme gets "burned off", the plant will be weaker, and weeds will grow around it. So then the gardener has to resort to more antiquated weed prevention...like pulling the weeds by hand, or spraying some weed-killer chemical all over the lawn. But those measures always are less effective, because the weed killer invariably kills some good seed, and pulling weeds by hand always takes out some good growth. So potent are weed-killers, that the National Academy of Sciences reported in a peer-reviewed journal that they can actually turn male frogs into females.

So think of your body as having it's "inoculant" missing...and then doctors, who can see the weeds in your body, start prescribing antibiotics, anti-virals, and sometimes even resort to "pulling" things. You're catching my drift now, right? Those "solutions" always have side effects, just like in my lawn example above. Our stomachs don't like antibiotics, because they kill the good bacteria as well. We get our tonsils out, or sinus surgery, because our bodies are no longer "innoculated" against allergies or sinus infections. And the weed-killer chemicals keep trying to kill the weeds, but they leave scorched earth behind.

Ampligen is better than the weed-killers, in that it actually restores our body's inoculant power. How?

Publishes research shows that Ampligen activates 2-5A synthetase. Activated 2-5A, in turn, activates this enzyme called RNase-L, which destroys viral RNA. Let me underscore that point- Ampligen's work on this enzyme makes it possible for actually destroying viral RNA. 2-5A itself also can control the growth of certain human tumor cells and inhibits reverse transcriptase, the enzyme both HIV and HBV use for reproduction.The protein kinase (p68) pathway is also affected in a similar manner.

So for the first time since contracting this hideous disease, with the help of Ampligen, instead of using the "weed-killer" pills, my body's immune system is learning how to beat back this virus, keep it from replicating, and destroy it. In short, my immune system is relearning how to do it's job!

Plus, as a side benefit, I'm feeling more "masculine" day by day!

Gloves and Lying

An example from a recent Risking Connections® training demonstrates simple, free interventions we can use to implement trauma informed care- and also demonstrates exactly how hard they are to do.
Juan constantly lies, according to the staff of his group home. He lies to avoid consequences or to avoid admitting he has done something wrong. He also tells lies about things that are happening in his life- such as that he has a girl friend in school. He doesn’t have a girlfriend! He makes up whole stories that simply are not true. For example, staff gave him some new gloves the other night to replace the pair he lost. Now tonight he is saying that he doesn’t have any gloves, that no one will ever give him any, and that none of the staff care if his hands are freezing off.

It is such a normal human response to argue with the truth of these assertions. You KNOW you gave him gloves Tuesday night. He has probably just lost them again or left them in school. Juan really has to learn to be more responsible! We don’t have enough money around here for an endless supply of gloves. And what is this story about a girl friend! You know from talking with his teacher that mostly Juan is a loner in school and has few friends. How is he going to manage life if he keeps lying? So it seems important to tell him that you know this is not the truth and how can you trust him if he keeps lying.

What is happening with Juan during these events?

His hands are cold and he cannot believe he cannot find his gloves again. He feels like such an idiot and a loser. No one likes him, no one cares about him, and no one should- who would want to be around such a jerk? He feels stupid and unloved, and plus his hands hurt. Saying no one has taken care of him enough to give him gloves expresses his emotional truth. Certainly he cannot admit to having lost the gloves again, then everyone will be mad at him, as usual.

What if staff IGNORED the truth/falsehood dimension of the situation and just reacted to the emotional and physical reality? What if Mark, Juan’s favorite staff, said- "Hey Juan I see you have no gloves, let’s find some you can wear." And when Juan said "No one ever gives me gloves" Mark could say "You’re feeling right now that no one cares enough about you to help you- so let me see what I can do to help you right this minute."

How hard would that be? Mark might feel that if he doesn’t confront the lie Juan will have put one over on him, or will never learn that it is not okay to lie, or will start telling more lies to get what he wants. He might feel that he needed to defend staff against Juan's charge of neglect, point out that staff have been responsive and would never let Juan go without gloves. But I would suggest that Juan will need to lie less when he develops a new view of the universe- that this world is a place where people will help you, where people care what you are feeling, where they do not shame and blame you. Only then would Juan be able to admit that he left his gloves at school.

And what about the girlfriend? Juan is desperately lonely at school and is sure he will never fit in there. He thinks none of the kids like him or ever could. Especially not the girls. So when he comes home he creates a new reality, life as he wishes it could be.

What if Mark were to reply: "wow it would sure be nice to have a girlfriend at school. What do you like in a girl, any way? What kind of girl would be the perfect girl friend for you?" and start a discussion of girlfriends in general. At some point Mark could ask, "If you wanted to make friends with a girl, what would be the first thing to do?" and start teaching social skills.

Note that Mark just side steps the true/not true question and again, reaches for the emotional reality. He doesn’t believe or challenge Juan’s story. He just turns it into a discussion of an important subject to Juan- girls. He avoids shaming Juan further (“Juan, I talked to your teacher an in fact you do not have a girlfriend”) which would just lead to Juan’s needing to lie even more.

What would it take for us to respond like this much of the time? When we are away from the situation in a training it all sounds like a good idea, yet in the pressure of real life we find ourselves reverting back to arguing about the lie. Time to think and plan, time to consider what needs the child is meeting, and to choose a more thoughtful and healing response are essential.

What do you think about the likelihood of this sort of response in your setting? Click on comment and let me know.

Connection in California

I received the following email on Friday afternoon. What a wonderful way to end a long and successful week!
Pat,

I wrote to you in May of 2009 and shared that I am a therapist in a Level 12 co-ed group home in San Luis Obispo California. We had recently changed our residential treatment program from a CBT based program to a Relationship Based model and we were having some growing pains. Since then we have made some tremendous growth, yet there are just a few things that keep us coming back to the table. Each time it does my thought is "what would Pat do," and more often than not due to the AMAZING blog you share we are able to work through the issue. ...

I have to say that is was an article that you wrote that finally helped change our program. For years I worked as line staff and was pleading to make some changes and then I found Pat and your blog. Thank you doesn't even express how much I appreciate, respect and admire you..you have started a movement toward healing these children. "Change your thoughts, you change your world." ...

And I want to leave you with this quick story...we have a young man who has been in our program almost two years. When he would get upset at times his coping skill would often be breaking the T.V. or other items the other kids enjoyed using. His response when given feedback by the kids or staff was to defend himself and say "I don't care." Within 3 months of us changing our program he sat in a group meeting with the other kids and said, "I know I broke the T.V. and I am working to fix it," he also had the other kids jump in to help him in that process. It was AMAZING!!!

Anna K. Yeackle, LMFT
Program Therapist
Transitions Mental Health Association
The Youth Treatment Program

Thank you Anna... people like you are the reason we continue our efforts to change the world.

ADHD and Vitamin D Deficiency: Any Evidence?

Is there any link between vitamin D levels and ADHD? A review of the current evidence:

We have spent a lot of time looking at correlations between vitamins, minerals, omega-3 fatty acids and amino acids (and their deficiencies) and ADHD. However, it is important to note that just because low levels of a particular nutrient are seen alongside the disorder, it does not necessarily mean that this deficiency is the cause of ADHD (i.e. correlation does not imply causation). In other words, the nutrient deficiency and ADHD symptoms might both be secondary effects of a larger primary cause, such as an enzyme deficiency or metabolic dysfunction.

In the case of vitamin D, the association with ADHD is a lot more muddled than with some of the other nutrients which have a relatively strong connection with the disorder (iron, zinc, magnesium, and omega-3 fatty acids to name a few). The amount of information in the literature is relatively scarce, as well. A search in the journal database Pubmed (where this blogger gets most of his articles and information) for "ADHD" and "vitamin D" turns up only a small handful of search results, the majority of which focus on other disorders and only mention ADHD peripherally.

However, given the fact that vitamin D is such a "hot" vitamin and has been a popular supplement as of late, we should investigate some of its potential benefits with regard to ADHD and related disorders. Please keep in mind that many of these points below are more theoretical or speculative, because most of the hard, concrete evidence in well-documented clinical controlled studies simply does not exist at the moment. Nevertheless, here are some possible ways in which vitamin D may help in cases of ADHD or related disorders:

Vitamin D can boost levels of the antioxidant glutathione in the brain. One way that vitamin D does this is by regulating an enzyme called gamma-glutamyl transpeptidase, which plays a role in both the metabolism and recycling of glutathione. We have spoken at length about how antioxidant deficits can worsen ADHD symtpoms, and how fatty acids (namely omega-3's) are frequently administered for ADHD and related disorders. Given the high makeup of these omega-3 fatty acids in the brain, and their susceptibility to oxidation and damage in the central nervous system, protecting them by boosting antioxidant levels (either directly or indirectly) is a good bet.
One of the current theories surrounding ADHD is that it is (at least partially) an energy deficiency syndrome, or is the result of impaired metabolic abilities in key regions of the central nervous system. While highly debatable, this theory holds that impaired glucose metabolism in various parts of the brain may be a major contributing factor to the presence or severity of this disorder.

While this blogger is currently neutral on this deficiency theory, it is interesting to note that vitamin D can help regulate glucose tranport into the brain, which would (at least in theory) improve this possible cause of the disorder. It is believed that vitamin D works by targeting multiple enzymes involved in glucose transport and metabolism. Much more study needs to be done to confirm this assertion, but this may be another potential benefit of boosting vitamin D levels in the ADHD patient.
Vitamin D may play a role in catecholamine synthesis. Catecholamines include the neurotransmitters dopamine and norepinephrine, both of which are believed to be tightly regulated and highly involved in the treatment of ADHD (deficiencies of both dopamine and norepinephrine in the "gaps" between neuronal cells are often seen in cases of ADHD).
Vitamin D boosts the effects of an enzyme called choline acetyltransferase in the mammalian brain. This enzyme is used in the manufacture of another neurotransmitting agent called acetylcholine. Acetylcholine is thought to play a major role in maintaining a state of sustained attention, a critical shortcoming in those with ADHD. In other words, keeping adequate levels of vitamin D could potentially help prop up lower levels of this attention-sustaining neurochemical.
Learning and memory deficits, both of which are heavily present in the ADHD population, have been tied to prenatal vitamin D deficiencies in the rat model. This involves a process called synaptic plasticity, which relates to memory formation in an individual. If this finding extends to humans, it could have serious implications on maintaining adequate vitamin D intake in pregnant women.
Problems with fine motor control are sometimes seen as a secondary characteristic in a fraction of the ADHD population. These problems may be exacerbated in a vitamin D deficient state.
Perhaps the strongest correlation, however, may be between vitamin D and depressive-like symptoms, particularly those associated with seasonal affective disorders (SAD). Please keep in mind, however, that studies on vitamin D levels and depression are highly variable; a number of studies have been done on the topic and found no such linkage between the two. We have previously investigated possible connections between ADHD and SAD in an earlier post.

This may make intuitive sense, since vitamin D production is triggered by sunlight, so in the dark winter months, the levels of this vitamin are often much lower (this may also be a major contributing factor as to why illnesses run so much more rampant during the winter months). In other words, vitamin D supplementation may be particularly useful in individuals with ADHD who also have co-occuring depressive or anxiety-ridden symptoms.

To summarize: Vitamin D does not have as many pronounced direct effects on ADHD as do some of the other vitamins, minerals, fatty acids and amino acids we have previously discussed. Nevertheless, the vitamin does seem to have multiple neurodevelopmental and neuroregulatory properties, and may go well with comorbid disorders such as schizophrenia, speech difficulties, memory problems, and (perhaps most strongly) depressive symptoms. Please keep in mind, however, that it may not be possible to simply "supplement these problems away" with extra vitamin D. This blogger just wants to point out that a deficiency in this vitamin often manifests itself in many ways, some of which closely parallel ADHD or related disorders. Nevertheless, supplementing may not be a bad idea, especially if you live in an area that gets minimal sunlight for part of (or all of) the year. Some rough guidelines for vitamin D intake can be found here.

Beauty Tip: Sleep On Your Back

Like to sleep on your side? May not be so good for your skin. Sleeping on the side can lead to creases forming on the cleavage from physical force of skin on skin. That’s why it’s better to sleep on your back. Sleeping on your back will not only give you a crease free cleavage but also will help to avoid some facial wrinkles. For instance, did you know that nosolabial folds form deeper on the

Being "Pushy" with Your Doctor

Treatment #13

Today's infusion marked the beginning of my 7th week taking this treatment, and the 40 minute drip-rate of the 400ml seems to be about right for me. I am also taking magnesium in saline once per week, which helps with the side effects of muscle aches.I am so thankful for this drug, because I can feel it working and making me stronger, week by week. But I also know that for most, until the drug is approved, getting Ampligen is problematic.

Someone asked me recently: "But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!" My response was longer than what I am about to share with you here, but the heart of my answer was "Push your Doctor to let you try things others are using."

Perhaps that seems like a Sisyphean pursuit to you with your physician, like pushing a boulder up a mountain, but I can tell you it's worth the effort.

Because I am a tenacious researcher, I discovered a number of treatments that worked for me pre-Ampligen, by searching published medical journals, doing exhaustive online research in a number of languages, and literally, hounding doctors. I've had the privilege of conversing with at least a half dozen of the leading M.E./CFS specialists in the world, and because I lived outside the USA, had access to some things that weren't available in the states.

Tragically, I'm convinced that for the average patient suffering from this hideous disease, your local doctor who doesn't specialize in this infirmity probably won't tell you about most of these options. But maybe you should at least "push" the question.

If you haven't explored any of these options yet, I encourage you to take "ammo" to your doctor, and basically ask him or her, "any reason why I shouldn't be trying this?"

If they say "why?" you can say: "Because other patients have used them to some success, and I have some research to back it up. And oh, by the way, why the hell not? Don't you want me to get better?" Then hand them your pen and say, "is your prescription pad handy?"

Here are my top five recommendations:

Nexavir (Kutapressin) - Based on the theory that the immune system is dysfunctional in CFS, researchers in Texas rediscovered this immune system adjuvant derived from porcine liver made popular in the 1930's. Kutapressin is an amino acid complex that was first used for Herpes Zoster. I would inject this 3 times a week, and could feel a difference. You'll need to ask your Doctor for a prescription for the vials and needles. Now called Nexavir, this drug was around for so long it didn't even have a patent, and after Schwarz Pharma stopped making it, it was reintroduced a few years ago, and you get it from this company.

Imunovir. Most research suggests that our immune systems are in over-drive...working too hard. Isoprinosine is an immune modulator, probably helping to shift Th2 back to Th1, while also serving as an anti-viral. According to studies, the immunomodulating and antiviral properties of the synthetic purine derivative Immunovir in CFS patients revealed enhanced natural killer cell activity and clinical improvement of fatigue. Lots of HIV positive patients all over the world take this stuff. You can get these tablets by mail from Canada from Rivex Pharma and you take it on a "pulsing" schedule, 5 days on, 2 days off; 2 months on, 1 month off.

B-12 with Glutathione Injections. CFS patients use up B-12 and glutathione in our systems very fast, and glutathione depletion is a problem. Read more here. With a few other ingredients added this treatment is known as a Myer's Cocktail and has been used by many CFS doctors for years. Here's the recipe if your doctor or compounding pharmacy needs it. I self-injected B-12 and Glutathione and always noticed a difference when I stopped. You'll need a script from your doctor, but you can self inject.

Moclobemide. This is one of the first anti-depressants ever developed, and is a reversible MAO inhibitor - acting on the serotonin in our bodies. Remember the virus is said to be in our CNS and brains, as well as our stomachs, so it helps your serotonin balance. It's not that we are sad, we just have screwed up brain chemistry. Did you know that there are serotonin receptors not only in your brain, but in your stomach as well? This drug helps keep the serotonin you've got, working. Taken in recommended doses, Moclebemide does not mess with tyramine and does not give you the "cheese effect," so diet is not an issue as with other MAOIs. There are absolutely zero side effects relative to libido or sleepiness, and it is available everywhere except the USA- not because it doesn't work, but because the drug monopolies want to sell you Prozac. Research shows it works as well or better than the newer ADs. And because it is reversible, I found it to be easy to manage. In Canada or Australia Doctors know it under the brand names Aurorix or Manerix.

Topical Ketamine. For pain emergencies, like unbearable migraines, this is the best reliever out there in my view. It's called a "dis-associative" in that unlike most pain relievers, it basically doesn't work on the pain itself, but rather just the "pain signal" in the brain. It chemically "unplugs" the message that tells you your head is killing you. As documented in "Betrayal by the Brain, Dr. Jay Goldstein pioneered the use of topical Ketamine for CFS patients, and you can ask your Doctor to order it from a compounding pharmacy. Don't freak out by the "bad rap" and misinformation about Ketamine ...face it, most drugs that work on pain could be sold or used on "the street" for nefarious purposes. But on the few occasions when I was vomiting due to migraine pain, the Ketamine "gel" gave me relief. And unlike opiates, which tend to be Th1-Th2 shifters, Ketamine doesn't affect your immune system at all. It's also been reported in Journals as being a very effective anti-depressant as well. But I only list it here for the pain relief factor. I probably used it less than 6 times a year, but when I was desperate, it literally saved me.

Today, I take none of the aforementioned anymore, except a small dose of moclobemide. The Ampligen is the job now, and the protocol requires that you not be on any of these types of immunomodulators while you are in the trial...so I couldn't take them even if I wanted to. But these were a lifesaver to me before I started Ampligen. Here's a nice summary of perhaps why.

As I've shared in other posts, the reason I have taken the radical step of uprooting my life and family and moving to a foreign city to get Ampligen, is that I decided I needed to be almost militant about saving my life. If that means we are considered "selfish" by the occasional nurse, or "pushy" by a Doctor, so be it.

In my view, "pushy" is better than "so sick I can't move."

Dr. Robert Davis to present on Benefits and Implementation of Trauma Informed Care

Risking Connection® faculty trainer Dr. Robert Davis to present on Benefits and Implementation of Trauma Informed Care at the Doctor Franklin Perkins School in Lancaster, Massachusetts.

This workshop will describe efforts to implement a trauma-informed approach to residential treatment and an on-campus school environment. Over a five-year period, this multifaceted initiative resulted in substantial reductions in both physical management episodes and staff injuries. Research in the area of trauma-informed practices within residential schools is still in its infancy.

Objectives:

1. Participants will learn about the national movement toward use of trauma-informed strategies.

2. Participants will learn about the benefits of training interdisciplinary staff in Risking

Connection®, an established curriculum for working with traumatized youth.

3. Participants will learn about numerous trauma-informed milieu and/or classroom approaches which can be integrated into existing evidence-based models of treatment.

4. Participants will learn about future directions in trauma treatment for youth, including

several body-based interventions.

5. Participants will learn ways to anticipate and overcome many of the institutional challenges of implementing trauma-informed treatment.

Presenter:

Robert Davis, Psy.D. Director of Clinical Services, Devereux Rutland, MA

Dr. Robert Davis has served as the Director of Clinical Services at Devereux as well as the Chief Psychologist of Devereux’s APPIC-approved Predoctoral Clinical Training Program. He also is a Faculty Trainer for the Risking Connection® Training Program for which he has trained multidisciplinary staff from congregate care settings throughout the country.

The workshop will be from 9:00 a.m. to 2:00 p.m. The cost is $45 for Members and $65 for Non-members. (Lunch is Included in registration fee).

To Register: copy this link into your web browser:

http://maaps.org/cde.cfm?event=300568

Deep Listening

One of the more difficult concepts which we teach is the power of listening. Such an old idea, so commonly taught, so rarely applied. In our training we have a section in which participants role play handling a crisis using a trauma informed approach. The most common problem is that people jump too quickly to offer solutions. They do not spend time to explore what the child is experiencing. In practice in our agency I hear the same thing. It is so tempting to offer advice, and so difficult to just stay with and share the other person’s pain.
We do this in spite of the fact that we ourselves do not like it when someone does this to us. What if I were to tell you that I was at my elderly father’s house last night, and I felt so tense about his deteriorating condition and what I should do that I ate two boxes of cookies? How would I feel if you responded: "Pat, there are better coping skills you can use. Next time you go there, bring some carrots." I actually might slap you. I would not even appreciate it if you told me about Visiting Nurse agencies in the area. Instead, what do I need? Some one to just say: "That sounds difficult. That must be very stressful for you."

Since I struggle to teach this is a way that people will remember it, I was struck when I recently read an interview of Thich Nhat Hanh by Oprah featured in O, The Oprah Magazine February 16, 2010. Thich Nhat Hanh has been a Buddhist monk for more than 60 years, as well as a teacher, writer, and vocal opponent of war—a stance that left him exiled from his native Vietnam for four decades. He speaks here of the incredible power of listening and not correcting:

"Oprah: The case is the same for deep listening, which I've heard you refer to.

Nhat Hanh: Deep listening is the kind of listening that can help relieve the suffering of another person. You can call it compassionate listening. You listen with only one purpose: to help him or her to empty his heart. Even if he says things that are full of wrong perceptions, full of bitterness, you are still capable of continuing to listen with compassion. Because you know that listening like that, you give that person a chance to suffer less. If you want to help him to correct his perception, you wait for another time. For now, you don't interrupt. You don't argue. If you do, he loses his chance. You just listen with compassion and help him to suffer less. One hour like that can bring transformation and healing.

Oprah: I love this idea of deep listening, because often when someone comes to you and wants to vent, it's so tempting to start giving advice. But if you allow the person just to let the feelings out, and then at another time come back with advice or comments, that person would experience a deeper healing. That's what you're saying.

Nhat Hanh: Yes. Deep listening helps us to recognize the existence of wrong perceptions in the other person and wrong perceptions in us. The other person has wrong perceptions about himself and about us. And we have wrong perceptions about ourselves and the other person. And that is the foundation for violence and conflict and war. The terrorists, they have the wrong perception. They believe that the other group is trying to destroy them as a religion, as a civilization. So they want to abolish us, to kill us before we can kill them. And the antiterrorist may think very much the same way—that these are terrorists and they are trying to eliminate us, so we have to eliminate them first. Both sides are motivated by fear, by anger, and by wrong perception. But wrong perceptions cannot be removed by guns and bombs. They should be removed by deep listening, compassionate listening, and loving space.

Oprah: The only way to end war is communication between people.

Nhat Hanh: Yes. We should be able to say this: "Dear friends, dear people, I know that you suffer. I have not understood enough of your difficulties and suffering. It's not our intention to make you suffer more. It is the opposite. We don't want you to suffer. But we don't know what to do and we might do the wrong thing if you don't help us to understand. So please tell us about your difficulties. I'm eager to learn, to understand." We have to have loving speech. And if we are honest, if we are true, they will open their hearts. Then we practice compassionate listening, and we can learn so much about our own perception and their perception. Only after that can we help remove wrong perception. That is the best way, the only way, to remove terrorism.

Oprah: But what you're saying also applies to difficulties between yourself and family members or friends. The principle is the same, no matter the conflict.

Nhat Hanh: Right. And peace negotiations should be conducted in that manner. When we come to the table, we shouldn't negotiate right away. We should spend time walking together, eating together, making acquaintance, telling each other about our own suffering, without blame or condemnation. It takes maybe one, two, three weeks to do that. And if communication and understanding are possible, negotiation will be easier. So if I am to organize a peace negotiation, I will organize it in that way.”
(Read the full interview at
http://www.oprah.com/spirit/Oprah-Talks-to-Thich-Nhat-Hanh)

So- Listening may be a path to world peace- and it is definitely the path through which we offer connection to our children and families. It can be painful, because it necessitates opening your heart to the sadness and suffering of the other person. But it is also healing, both to our clients and to our selves.

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!"

Transforming Resistance to Enthusiasm in MA

On April 6, 2010 (Tuesday) Steve Brown, PsyD. and Pat Wilcox, LCSW will be presenting at the Massachusetts Department of Mental Health Child & Adolescent Restraint/Seclusion Prevention Initiative Grand Rounds. Our topic will be: Transforming Resistance to Enthusiasm - Implementing Trauma-Informed Care. Trauma-informed care is an important element to the success of preventing restraint and seclusion use. This training will provide and understanding of how to implement trauma-informed care in child & adolescent settings. It will include an overview to the Risking Connections trauma training program, as well as the Restorative Approach which is a trauma- and relationship-based approach to treatment of children. The presentation will focus on the most effective transformation process for overcoming common staff concerns and changing resistance to enthusiasm.

The presentation will be held 9:00 AM – 12:00 PM, (Registration starting at 8:30AM) at the Lazare Auditorium of the UMass Medical School in Worcester, MA. The registration deadline is Monday, March 29th, 2010. To register please contact Annabelle Lim at Email: annabelle.lim@massmail.state.ma.us or Phone: 617.626.8087. An email confirmation with directions will be sent upon registration. CEU applications have been submitted for: Licensed Mental Health Counselors, Psychologists, Nurses, & Social Workers. Hope to see you there!

Beauty Talk: Cellulite - Identifying the Enemy!

The first days of spring are here and though it’s still quite long before we bare it all on the beach, it is time to take action to make sure that what we bare is smooth and toned. So I thought it would be good to take a closer look at the cellulite issue. Are you familiar with the orange peel syndrome or as it’s also called cottage cheese skin? For several years I thought I had cellulite but I

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.

Subscribe to: Posts (Atom)

© Copyright New Treatment Ways 2011 - All rights reserved.