Thursday, April 22, 2010

My Allergic Cascade

I never heard the phrase "allergic cascade" until 10 days ago, when I woke up with a nose so swollen with mucous that I literally could not blow it out. Seeing my distorted face in the bathroom mirror, all I could think of was that classic scene in the movie "Hitch" where Will Smith's head reacts to his shellfish allergy by exploding to twice its normal size, and he starts guzzling antihistamines.

Allergy season, huh? They warned me about this little side-benefit of living here on the East Coast of the USA, but like every other "little" physical challenge we face, this seemingly "minor" irritant became a huge problem for me, because of the immune system issues it portended.

It started pretty innocently - the meteorologist on TV the night before said that "pollen levels will be the highest on record in more than 25 years, " but since I had never been bothered by Springtime allergies in the past, I didn't pay much attention.

I should have. 

"Normal" average people all over this town were sneezing and stuffy, complaining of the extreme allergic reaction to the visible pollen in the air. But as you well know, we are not "normal" or average. We have immune systems that are already ramped up,  and I have the additional issue of having an immunomodulating drug called Ampligen basically stirring things up like a hornet's nest on top of it all. 

I knew I was in trouble when I decided to carry a roll of toilet paper around with me all day- so continuous and heavy was the flow of snot literally pouring out of my nose.  Not only did I have to fight the usual Ampligen provoked flu-like symptoms of headache, sore back, and muscle-aches, now I was wrestling with the added kicker of a completely closed nasal cavity and swollen sinus passages. I not only couldn't speak intelligently, I couldn't hear myself speak unintelligently, and I couldn't figure out how to eat and breath at the same time.

If you want to simulate what I was feeling, put your head completely underwater during your next bath, use your fingers to close your nose,and then try to eat a chicken leg. Then try talking.

But that wasn't the worst part. Blocked sinuses in turn affected my sleep, because as my mother would tell you, I have never learned how to breath through my mouth when sleeping. With my nose completely plugged up, I had to literally "prop" my mouth open with the edge of the pillow, to try to get small amounts of sleep in. I can now tell you 8 different ways to make a "jaw wedge" out of linen that would rival any tool in a dental office.

But of course those breathing solutions were short lived, because after a few minutes, as I'd enter REM, my mouth would shut by habit, and I'd jolt awake gasping for air. My wife told me the first night she stopped counting after being entertained by this drama a dozen times the first hour, and after me telling her to "stop waking me up!"  Which, with my snot problem, sounded to her something like "Shlop shwakige mhee huah!

Relief started to come, albeit on a very temporary basis, when a friend recommended a nasal spray called "4-way", which is basically just a pseudo-epinepherine mist that shrinks the nasal passages for about an hour. Using that life-saving spray, (which by the way does not have adrenaline properties), I was able to take cat naps during the night, and talk on the phone occasionally. Without it, I sounded like Elmer Fudd, and no one ever truly believed it was me on the phone.

The only good thing out of having my nose completely plugged up was, without a sense of smell, I didn't enjoy eating at all, so my pot-belly began to shrink. 

Studies show that allergies are more common in people fighting fibromyalgia and CFS or M.E.  Some have even gone so far as to say that food or environmental allergies can predict CFS/M.E.  The fact of the matter is, whether it is a virus, or a mold spore, or pollen that enters our systems, our body's reaction is essentially the same - to send "troops" to oppose the invader. The immune system immediately reacts to whatever the invader by producing several types of cytokines, including interferon alpha and tumor necrosis factor.

Cytokines are small proteins that can either step-up or step-down the immune response, but they also cause things like inflammation of tissue, tiredness and body aches.  If the allergic response goes on long enough, or is in an environment of TH2 predominance as opposed to TH1 (most CFS/M.E. patients are in a chronic state of TH2 shift) the situation becomes an "Allergic Cascade."

Using the term "cascade" for what I went through makes it sound like a pleasant float trip or an enjoyable white-water ride. Trust me, this was no fun.  I'd prefer to call what I experienced an "Allergic Drowning," because until today, I was fighting for air and breath every moment.

Today, after my Ampligen infusion, (which was #26) and a squirt of nasal spray, I am finally breathing normally through my nose. I no longer look like Will Smith. I no longer sound like Elmer Fudd. And with my sense of taste returning, my belly is starting to return to its new found pot-belly shape!

Saturday, April 10, 2010

What I Look Like Just Doesn't Matter

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

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

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

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

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

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

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

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

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

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

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

"Can I have this salad without the onions, crutons, and tomatoes please?"
"What?" she asked incredulously, "I mean, you'll just end up with lettuce and cucumbers, sir."
"Great, that's the salad I want please. Just lettuce and cucumbers."

Now on a roll I thought, I continued humbly: "Can I get this halibut poached instead of barbequed?"
 "Oh, no, we don't have that, sir." she said matter of factly.

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

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

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

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

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

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

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

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

Then I rush to the Internet and buy more stock.

Saturday, April 3, 2010

Garlic: Virus-Killer; Libido-Booster

Yes, I'm going to talk about sex in this post, because one of our challenges is that this hideous virus not only diminishes our libido, but sometimes completely wipes it out. But I'm also going to discuss what I've found to be one of the best remedies for that part of our symptoms list, which also turns out to be also one of the best natural virus killers out there. 

My first experience with eating raw garlic came in the form of a prank some 20 years ago, when I lived in L.A. I think primarily to show off his fluent Hebrew to me, a friend of mine who had just returned from a 2-year gig in Israel took me to a local Israeli restaurant in the Valley. He insisted that I let him order for the both of us, and although the restaurant owners spoke perfect English, except for one comment, for this "show" they dialogued in their native tongue. So I had no idea what I had ordered, or was about to eat. Big mistake. 

Handing me my bowl, the owner grinned as he asked me, "You married?" "Yes, why?" I replied, but he decided that instead of answering me he would kiss his wife, who was also working behind the counter in the tightest slacks I've seen since Mary Tyler Moore debuted on the Dick Van Dyke show. He also grabbed a part of her anatomy that made her swat his hand away, but she was giggling while he did it. "Geez," I thought to myself, "no wonder King David and King Solomon had so many problems with women!"  I looked at my friend Mark for a clue but he just motioned for us to sit down and start eating.

As I took the first big forkful of what appeared to me to be rice, lentils, and some chopped nuts, I couldn't help but notice my friend Mark and the entire restaurant staff all staring at me in expectation. No longer was Mr. horny romantic restaurantuer fixated on his wife - now his eyes were fixed on me.  "I guess they think I'm really going to like this dish" I naively thought to myself as I began to eat. After chewing the "nuts" for a couple seconds, the realization of what really was going on hit me too late. These were not peanuts or almonds I was masticating, these were raw cloves of Israeli garlic, and everyone was in on the joke except me! 

Let me tell you right off what I learned the hard way. Chewing raw garlic is a shocking, extremely torturous dietary experience. As my tongue felt the heat of these burning embers dancing around my mouth,  my brain went into fight-flight and I reached for the water faster than you could say "Mazeltov." With my friend laughing his "tuchas" off, I looked to the proprietor for help. 

"What did you put in this dish, raw garlic?" I asked in disbelief. 

"Yes, of course," he replied matter of factly, grabbing the waste of his beautiful wife or girlfriend, "but don't worry. The fire in your mouth now will turn to fire in your pants later. It is a very passionate spice!" 

Still unable to speak for laughter, my friend simply nodded and spurted out, "It's true. Scientifically proven!" 

Now let me tell you two things about that. First of all, if garlic is a libido booster, which I tend to think it might be, you still have to remember that most women, including my precious wife, don't get that turned on when your entire body smells like it spent a week in Tony Soprano's mouth. Trust me, fire in the pants not withstanding, if my wife can't stand to kiss me, she isn't going to be inclined to do anything else. And eating raw garlic like I did at that restaurant left me smelling rank for about 3 days, no joke. 

But secondly, this disease that we fight and labor against every day affects us adversely in many ways, including often wrecking our natural libido, neurally. This has been documented and published in many places, and many patients have confirmed it to me personally. It only makes sense - when you feel like you have the flu, can't think straight, or have excruciating muscle or body aches, sex usually isn't at the top of your list. Ask Maslow. 

But because these viruses that are activated in us are in the CNS, and affect our brains, we also sometimes have some "circuitry problems" with our neurotransmitters. I mean, sometimes, the connection just doesn't work, if you get my drift. 

My father-in-law visited me recently and couldn't believe how non-plussed I was, literally unaffected, by all the women around my life right now. Except for my main physician, who I rarely see, almost everyone at the clinic is female, patients and nurses alike. My neurotherapists are women. I live in a condo that has 80% single women in it. When I go to the gym it's almost all women. And none dresses conservatively.

My father-in-law asked me, "How do you handle it?" 

I tried to explain to him, that truthfully, thanks to this disease, I have zero attraction to any of them at all - no thoughts, no desires, no "movement." He couldn't believe it, but that is the way it is. So that part I guess is a blessing in disguise. No temptation if Bathsheba happens to be showering on the roof next door. 

But then when it comes to the times I want the libido to work, on those occasions when I don't feel wasted and my gorgeous wife is wearing those sexy pajamas and flashes me that million dollar smile, I found it actually can be resurrected, tactilely. As long as she gazes into my eyes, connects with my soul, and kisses me as only she can, my brain and body seem to respond. 

If I've taken garlic that day I get two benefits. 

The main one for me is that it makes me feel better, by retarding the viruses that are raging in my body. When you are on the Ampligen trial, you can't take any other anti-viral meds; but you can take raw garlic! I just completed my 20th treatment, and just about everyone I know who is or was on Ampligen uses garlic, and most cancer patients and survivors know about its antiviral properties. That the National Cancer Institute recommends it only underscores what most of us have learned experiencially- garlic kills viruses that hurt us. You can read more about that here, and here, and here. Whenever I take it, my body feels better. My muscles ache less, the flu-like symptoms diminish, and my sore back actually gets relief.

But also, it does seem to help with the libido. The secret is figuring out how to take raw garlic, and have it not affect your breath, so that he or she will still want to kiss you. Here's the routine I've developed thanks to my wife's detailed coaching: 
1. "Drink" the garlic like a shot of tequila- stir the chopped raw garlic in a shot of milk and "throw" it back, down your throat, past your tongue as much as possible; 
2. Brush you teeth and tongue no less than five times before attempting anything romantic. 
3. After each brushing use a good rinse of Listerine Orange flavor. 
4. After each mouthwash rinse gargle with fresh water

If you follow this procedure you may find that you are feeling better not only because the garlic has sent the viruses into retreat mode, but also because "the fire in your mouth has turned to fire in your pants!"