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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Kelvin Lord
"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...
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...
Treatments #13 and #14
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...
My blog today includes my top 5 Treatment Recommendations outside of Ampligen - things you may need to "push" your Doctor to give you.
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...
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...
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...
Treatment #10
Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating.
This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other...
Treatment #9
"Depression is melancholy minus its charms." Susan Sontag
This past weekend was rough. After having 8 treatments of Ampligen over the past 4 weeks go so smoothly, I wasn't prepared for the surprise dark cloud that rolled over my horizon beginning Friday evening. Some would...
Treatment # 8
Today is my first month's anniversary with Ampligen, and my body celebrated by manifesting all the signs that it was working - feeling like I had the flu. I say that only half in jest, because my Doctor confirmed last night that, after seeing patients on this drug for the past...
Treatment #7
I don't want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning's Ampligen infusion would simply be "speed." Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got...
Treatment #6
I promised I would tell the good, the bad and the ugly of this journey so today's post will have two out of the three Let me get the bad out of the way first, because the most amazing thing happened to me after my last treatment I'm bursting to tell you about it.
First, let...
Treatment #5
Today's infusion took longer than any prior, because they doubled my dose. As promised, my Ampligen quantity was upped from 200ml to 400ml, which veterans tell me is the "full dose." So as not to stress or shock the body with the increased chemical or the quantity of fluid going...
Treatment #4
Today's Ampligen infusion marked the fourth and last treatment at the 200ml "adjustment" or acclimation dosage. I'm now into a quaisi-routine, arriving at the clinic around 9:30AM every Monday and Thursday morning, and the procedure goes amazingly fast. In less than 3 minutes...
Treatment #3
Three down, scores more to go! Today as before, Gwen got the needle in quickly, and strapped me up to 200ml of Ampligen, this time pushed through in under 35 minutes. Today I followed that up with a saline infusion, recommended by many, and it seemed to actually give me a boost...
If this were only fiction, I'd be riveted. Like reading Chronicles of Narnia or watching some of the current Apocalyptic movies where the insidiousness of the enemy is so penetrating. Unfortunately, we know that this is non-fiction, and these letters are expressing the real battles we all face...
Treatment #2
"In times of sickness the soul collects itself anew" Latin Proverb
I arrived at the medical center this morning a little before 10:00AM with a slight headache , because of the drive, and because as a former-perfectionist, I hate to be late. My plan was to get there by 9:30AM...
Treatment #1
The adventure begins.
I arrived at the Doctor's office a few minutes late because of bad planning on my part, so I was a little stressed to begin with. It took them about a minute to get me set up in a nice reclining chair in the "infusion room" and when Gwen took my...