Friday, March 15, 2013

Everything I Needed to Know About Managing My Health I Learned at Disneyland

The patient didn’t know it, but she was just 60 seconds away from relief. Standing at the doorway to Dr. Goldstein’s office with some PLO-gel glistening from her forearm, she looked disappointed. Marie had been without significant sleep for days, her fibromyalgia and M.E. pain flaring to the degree that the “wired-tired” feeling dominated her fitful nights. Like most of us, she was desperate, and had heard that Dr. Goldstein was fast in both diagnosis and treatment.

“Dr. Goldstein” she said with furrowed brows, completely unaware that she was interrupting my appointment,  “I don’t think this one is working either.” Her forearms had lots of little circles of goo on them, indicating a number of product tests were going on that day.

PLO gel is a wonderful drug delivery system.” Dr. Goldstein explained seeing my puzzled look. “It is much like the oft-maligned DMSO, which every equestrian and horse trainer uses daily,  safely. So Marie, how long has it been since we applied that last one?”

Marie didn’t seem to hear.  She was focused on the words “horse” and “equestrian.

“You use horse medicine on me?” she asked incredulously.

“How many minutes has it been Marie?” Dr. Goldstein persisted.  

Still a little bit bugged by Marie crashing my appointment, as well as the fact that she was using up my time with the Doctor by standing there mute, I decided to help her.It came out more acerbic than I wished:  

“If words fail you why don’t you just tap out the answer with your front hoof?”

The stare I got back from Marie spoke volumes. Dr. G just smiled at her, and looking at his watch said, “Let’s give it another minute or two, Marie. Based on your other tests this NMDA antagonist should be unplugging your pain signal right about now.”

“But I still am at 7 on the pain scale doctor, and…oh, wait, what it is going on?…Dr. Goldshteehhhn…”

With that, her voice trailed off, and without further ado she gracefully slid down the wall that was supporting her, sat down on the floor, and started snoring.

Dr. Goldstein immediately called for staff help, got her up into a comfortable lounge chair, and said, “What are you feeling now, Marie?”

“Wonder…wonderful,” she slurred. “I feel no pain. May I go back to sleep please?”

With a nurse giving Marie a blanket, Dr. Goldstein said, “Yes, now that we found what works for you, you can sleep here the rest of the afternoon.”  Then he turned to me and said with a sardonic grin, “Your turn!” 

That which I experienced at Dr. Jay Goldstein’s office 10 years ago, is very similar to the aggressive approach to health management that Rich Van Konynenburg suggested to me just 2 years ago. For both, in a word, it all comes down to speed.

Rich Van K put it to me this way almost 18 months before he died: “Kelvin, at our age, to see if one medicine or therapy works. I tweaked the methylation protocol on a daily, sometimes hourly basis until I found the right formula for my body.”

For most of the first 2 decades that I battled this disease I played by the rules. I took my place in line to see the doctor, and waited the months required to see him or her. I followed package inserts and MSD sheets exactly. I waited weeks for the blood work to comeback, and then waited months to see if one new drug, or one new medicine, might work. Usually they didn’t, and usually I felt ripped off as a result. “Another half-year of my life just to find out that Valtrex doesn’t help me.” 

So beginning two years ago, I started what I call Kelvin Lord’s Magic Kingdom “maximized experience” approach to managing my health. 

You see, I learned something at Disneyland. As kids growing up in L.A in the 60’s, my sister and I always wanted to be first in line at the Magic Kingdom entrance in Anaheim.    Thankfully, the Disneyland staff always reinforced our early arrival idea, by shouting in the megaphone to those of us who lined up before the gates opened: “ Congratulations kids! The early bird catches the worm and by being first in line today you are going to maximize your experience at the Magic Kingdom. “

Our strategy for this “maximized experience” was simple - get on as many rides as possible, in the fastest time possible, so that when the park closed 12 hours later, we had done it all.  That often meant racing to the most popular rides, like the Matterhorn or Pirates of the Caribbean, the moment they opened the gate, and cramming kiddy rides in between.  Many times during my childhood my sister and I achieved this feat, and actually experienced everything Disneyland had to offer at the time, exhausting all our tickets, all in one day.

When I left Charlotte in January of 2011, having finished a full 52-weeks of Ampligen, I was leaving victoriously, with improvement in a number of areas of my health.  Yet although I was indeed 60% better than when I had arrived at the clinic, and though the Ampligen did the job as advertised, the 40%  that Ampligen couldn’t fix was still problematic.   But I wasn’t in the mood or mindset to approach working on this 40% in the same antiquated, draconian way I had in years past – that is, slowly and patiently, waiting for doctors and labs and pharmacies to take weeks to do anything.

So with Doctors blessings, starting 2 years ago, I made it my mission to try, test, and sample as many of the leading therapies and meds as possible in a one-day window. This was based on Dr. Goldstein’s and others observations that “done correctly, except for ADs and other slow to peak drugs, there should be no reason you can’t know if a medicine is working for you within hours if not minutes.”

Like Paul Newman’s character in The Verdict, I look at my health each morning now and declare, “There are no other days. Today is the day.”  And then I proceed to change a dose, augment a supplement, or try a new one.

I know what you’re thinking. Making myself a petri dish for real time lab experiments can be dangerous. Please note, I agree, and am not advocating the wholesale abandonment of our doctors, or ignoring published research. But let’s remember that Dr. Barry Marshall discovered the amazing cure for ulcers only by ingesting a beaker full of bacteria, and seeing how his body reacted.  Again, it comes down to how much time you have- for me as a Baby Boomer with limited years left, I need to test these things fast. Fortunately, by reason of battling this disease for over 2 decades, I have accumulated some of the best M.D.s in my rolodex, located all over the world, who work with me as I experiment.

Time and space prohibits my detailing the hundreds of meds I have tested on my body in this manner, so instead I will give you a snapshot of a living, dynamic example of Kelvin Lord’s typical Disneyland Experience day. This just happened a few days ago:  

It was the end of a long week, and 15 minutes before my last appointment was going to arrive, I felt the brain-fog trying to return. That my body was tired was a given. But I also felt my mental acuity diminishing. I was having a hard time coming up with words that had more than one syllable. In the old days, following the “rules” I had one recourse- go to bed and make it dark in the room, and hope that in about 24 hours, I might feel a little better.

However on my new “maximized experience” program, because I needed to feel better NOW, in 10 minutes or less, here’s what I did:

-Got a blue syringe and shot myself 2 ML of B-12;
-Changed the needle and gave myself a shot of Nexavir;
-Injected .5ml Glutathione IM;
-Ingested two tablespoons full of coconut oil;
-Chugged 8 oz. of fresh carrot, celery and garlic juice;
-Gave myself a coffee, nitazoxinide, garlic oil enema;
-Rubbed in some topical pregnenolone/DHEA;
-Took a half-dose of low dose naltrexone. 

The result?  In less than 10 minutes my body had more energy, my mind was refocused, and my emotions were more peaceful.  I had my meeting with no problems, and even though it ran long, I could hang in there.

Are you waiting weeks or months to get “permission” to try something that other patients or doctors are using? Perhaps you should think about speeding that process up. Today when I read about a new treatment that has promise, or see a blog post by a patient trying a new supplement, I no longer file that away for 3 months from now. I send an email to one of my doctors, ask him or her if I can try this, and take it from there. Often the medicine is not available in the USA, so I figure out ways to get it through different distributors.

I have had meds delivered to me from Canada, Europe, South America, Australia and New Zealand.  For those of us who are using Immunovir- you know that comes from Canada and Ireland. Yes, there is a law in the USA that supposedly prohibits it, but recent DEA rulings have indicated that they will not prosecute anyone for personal use or importation of non-narcotic medicine from foreign sources if no more than 3 months supply.  Probably because so many Seniors have been getting their meds from Canada, currently the DEA is not enforcing this prohibition.  

We also get meds from other sources. With my doctor’s blessing I have treated the parasites I picked up in South America with a medicine designed for horses- yes, veterinary grade Ivermectin. I get this at the “Tack” store for equines. It cost me $12 for the horse version.  If I had to get the human version in Europe called Stromectin, I’d be out $1200 with shipping.

The first time I took the horse medicine that came with a picture of Clydesdale on it, I said to my wife as we sat down to dinner: “I don’t think this is working.”

“How much did you take?” She asked. “How many mgs?”

Lowering my head and thrusting my front foot forward, I pawed the ground three times,  Mr. Ed style. Tap - tap – tap. 

“Ah, 3 mgs. Good boy!” my wife responded, getting the joke. “Now let’s get you some food. You must be hungry as a…”

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