Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.
I actually jumped the gun a bit about declaring my immune system gone as of yesterday. Today we had our blood tested, then met with a doctor. Dr. Priesca told me that I will hit nadir somewhere between Friday and Sunday. I’ll be tested again on Friday.
Another girl at the clinic also reported, very cautiously and superstitiously, that she was starting to feel some benefits, but she didn’t want to jump the gun and jinx anything.
I told Dr. Priesca that I thought I was already experiencing less pain in some areas, and he responded that some patients do start to report recovery of symptoms as early as this point in the procedure. Wow! Any chemo suffering endured is clearly worth this.
While in the waiting room, I was engaged in a conversation among several patients and caregivers on my left. This meant turning my head to the left and talking. Arms and neck and facial expressions needed to me more animated than usual since we all had mouths hidden by surgical masks (as is required by everyone whenever outside your apartment at this stage in the game).
Head turned to the left with animated communication…that would have been recipe for disaster: pain across the back, which would have quickly descended into a pain-crises, stabbing pain in my left shoulder.
Instead, there was nothing. I was just a normal person.
In a reflexive motion learned from years of subconscious training, I turned my body towards the group to lessen the angle of my head and minimize the would-be pain. And in another subconscious maneuver, I crossed my left leg over the right to increase my turn radius. Wait, did I just cross my left leg over my right without the assistance of my hand lifting it? It wasn’t terribly easy to do without assistance, but that’s another improvement!
Okay. Keep cool. Don’t get too excited. No bad omens. Maybe it’s a fluke or something. Keep it on the down-low. Shh.Add a comment
Sorry for the long lapse since the last post. Chemo kicked the $#%& out of me (and only me). Two days ago, on Day Zero, when we had our new “birthday,” everyone else was chipper and excited. We all got our stem cells back and had the catheter removed. There’s big a Happy Birthday sign in the room for that.Sorry for the long lapse since the last post. Chemo kicked the $#%& out of me (and only me). Two days ago, on Day Zero, when we had our new “birthday,” everyone else was chipper and excited. We all got our stem cells back and had the catheter removed. There’s big a Happy Birthday sign in the room for that.
Out of eight of us who were there to get our stem cells back, I only heard one other person say they had any problems from the second round of chemo, but I was nauseous and hungover for three days. I’ve always had sensitivities to a wide variety of medications, so I guess this is one more to add to the list. Most people had no ill sensation, whatsoever.
This morning, I finally started eating again, which was a catalyst for breaking me out of the nausea slump, and now I feel so much better. Anyway, today my immune system is officially depleted. Technically, there is no more memory of MS in my immune system because there is no more immune system in my body. Yay!
Some people start noticing improvements in their MS symptoms as early as today, and I must say that I am one of them. The stabbing pain that normally plagues me whenever my shoulder and neck become animated (i.e., while engaged in a conversation or when driving, etc.), well, it’s now just a nervous discomfort. It’s like I can feel the trigger activate, but the resultant excruciating pain is absent. Holy Cow! That was the single most important thing on my list of improvements that I was hoping to address. ???? Even if nothing else improves, and assuming this change is permanent, this transplant is now a smashing success!
Of course, there’s typically still two full years left of damage recovery, so we’ve only just begun to heal!! Add to that the idea that I could eventually be able to stop taking all MS and pain medication. I’m happy ????
The journey is worth it.Add a comment
Here I am, sitting in the apheresis room with all five of us in Group 1. We are each hooked up to our own apheresis machine via the catheters we had inserted several days ago. The catheters go right into the jugular vein.
Being a mechanical engineer, I can tell you that these are the coolest machines I have ever seen in my life. I bet they cost a pretty penny. When I was here in February, I saw only one machine, and now the clinic has five. This room was the old chemo room. They’re growing.
Dr. Priesca is running the show in this room with two other doctors. Dr. Ruiz-Arguello came by to shake everyone’s hand and chat for a moment with each of us about our medical condition. He’s a very friendly and jolly man.
Some people experience bone pain as a result of the mobilization chemical, which we’ve been receiving twice-daily for the last week. Mine has been only a persistent headache over the last couple of days, which I was just told was not only typical, but is actually bone pain. A couple of days ago, I woke with a fever. All the above is normal and easily managed with Tylenol. There have been varying levels of discomfort throughout the group, some experiencing none.
The goal here right now is to collect one million stem cells per kilo of body weight. I’m looking for about 165 million. I’ll be hooked up to the machine for a few hours; then they will take the collection bag to the lab and measure it. If I reach my goal, then I go right to chemotherapy. If I miss it, then I must come back tomorrow and try again. In that case, my Day Zero will be delayed.
This next, two-day round of chemo will be strong enough to destroy my immune system. It’s sure to make me a little unsettled, but that’s what I’m here for. A few days after that, theoretically, the MS will be gone from my body! Yay!! Then I’m on to recovery.
Dr. Ruiz just came in to tell me that I harvested 175 million stemmies!
Onto chemo now.Add a comment
Dr. Guillermo Ruíz-Argüelles has published several papers on the National Institute of Health (nih.gov) concerning his particular protocol used for hematopoietic stem cell transplant (HSCT). Called, The Mexican Method, this protocol is different from Dr. Burt’s (Northwestern University) ongoing, Stage 3, worldwide clinical trial. (The Ruiz clinic has over 600 published papers, many on the NIH.)
Since the agenda paperwork I received for my treatment did not include a timeline graphic, I decided to make one, so I don’t have to keep explaining to friends and family where I am in the process. I’m also very visually oriented.
I’m currently at Day -4, so there’s going to be a lot of action coming up soon. Right now there’s just a lot of shots and pills. Below is a timeline I created of the Mexican Method.Add a comment
Yesterday, everybody in Group 1 went to the hospital to have minor surgery. We had a hemodialysis catheter inserted under our clavicle. This is actually a pair of tubes, each as big as a fat vein in your body, together allowing the blood to flow out of the cardiovascular system, through the apheresis machine and back into the body.
The hospital here was very nice and new. After six years in the restaurant business, I, myself, am very familiar with health code in the USA, and I did notice some peculiarities; however, this was no third world hospital. In fact, the bathroom in my waiting room was enormous, with a giant, marble shower to boot. Everyone was extremely courteous and professional. In the few hours I was there, a maid came by to clean up, and she got my initials on her rounds sheet to prove it.
Having done several previous surgeries, I was not nervous, even a tad. The anesthesiologist made sure my entire time was absolutely pain-free, and the quick, out-patient procedure went off without a hitch. The procedure, itself, lasted only 15 minutes under general anesthesia.
Afterward, I celebrated with some corn-flour quesadillas. I hadn’t had cheese in almost a year.
When we got back to our apartment, we were moved, by our request, to a new unit, further from the disco club across the street. We had two nights in a week, where they were blasting loud music until 5:30am, and for one of those, construction workers started a jackhammer at 7:30am. The hospitality company was gracious in accommodating our move, assisting us with a shopping cart, transferring from one building to the next via the basement garage to keep us out of the thunderstorm’s pounding rain. Last night was much quieter! I think we’re the first ones to reside in this new unit. It’s super clean, but it’s missing a few things, like toilet roll holders and an RO water system. Felipe brought us a 10-liter bottle of drinking water.
Later last night, there was some expected discomfort from the surgery, which was to be handled only by Tylenol (here, Tylex). I was up at 7am for my morning shot of filgrastim (stem cell mobilizer), took another Tylenol, and went back to bed, finally, for two hours of quality sleep. Now, I’m back to pain-free again. That wasn’t bad at all, considering it was the only surgery of the protocol.
By the way, I went back and added some photos to some earlier posts.
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