The Cut, Poison, & Burn Club - Part Two
The Default "Solution" of the American Healthcare System
In Monday’s post, I left off at the point where my husband and I had to make arrangements for treatment of his hereditary hemochromatosis (HH). Again, no medical advice here. Just telling a story…
One of our options was a risky overnight stay in the ICU using some kind of pharmacological chelator that would force his iron levels down to next to nothing. This “sledgehammer” approach, treating a chronic condition as if it were acute and immediately life-threatening? Using a method that required at least 24 hours in ICU under constant supervision? I’m sorry, what? We didn’t have questions about how this would affect him or how he’d feel afterwards because it was just not going to happen. It sounded horrific.
Hubs then tells me that phlebotomy is the other treatment. OK…Yeah, he says, and the doctor says once a week for the foreseeable future. Once a week! That is too much, I screamed. (I did, actually, scream.) Well, have to get those ferritin levels down to acceptable levels. (Ferritin, BTW, is a blood protein that stores iron. When ferritin levels get in the range of 2,000 - 2,500 ng/mL, organ damage…)
For context, at its highest point, hubs’ ferritin levels came in at 1,436 ng/mL. Safe, acceptable levels vary — depending on whom you ask — between 75 - 300 ng/mL — for men (a little lower for women). So his levels are anywhere from 19 to 5 times where they should be. Yikes.
Despite my protests, hubs scheduled his weekly phlebotomies. As expected, they kicked his butt. Just when he started to feel like himself, back he went to “donate” more blood. Can’t you go every two weeks? No…Doc says it’s got to be every week. OK, how about splitting the difference and going every ten days, I ask? Nope. The doctor wants to get these numbers down — and fast. Why the sledgehammer?
Phlebotomy results in average ferritin level reductions of about 30 ng/mL, sometimes 50, and maybe as much as 100, at a time. Sometimes. Plus cutting out alcohol, raw seafood, and red meat among other things. Doing the arithmetic using a conservative average, we’re looking at probably seven to eight months of weekly bloodletting. Ugh.
January 2019 - Health Writer Bill Sardi to the Rescue
Meanwhile, I’m still thinking there’s got to be something to replace or complement these phlebotomies, maybe even keep my husband’s HH in check for good. There has to be something! Besides no alcohol, no red meat. Forever? Tell that to an Irishman…
The help came from the most unlikely place — or maybe not. One of the best places for ideas on freedom, peace, the free market, and (very, very) limited government is Lew Rockwell’s site. The site for all things pro-liberty, pro-peace, and pro free market. This includes health freedom, which means the right to learn and explore the many ways to get and/or stay healthy outside of the mainstream — and choose for oneself.
One of Lew’s featured writers is the late Bill Sardi.1 (God rest his soul.) With my own interest in health topics, I made it a point to read Bill regularly. I highly recommend a look at Bill’s articles archived on Lew Rockwell’s site. Sardi focused on health, but he covered a range of topics. He was ahead of the curve in lots of ways, too. For example, did you hear about the article published last Jan citing the effectiveness of the IgY immunoglobulin found in egg yolks against SARS-CoV-2? Sardi wrote about this and its effect on influenza — in 2018!
On January 13, 2019, I’m on Lew’s site reading Sardi’s January 12, 2019 article on longevity. It has a long title that ends with “…supplement your diet with rice bran IP6.” Though I have minimal interest in longevity (as in doing everything I can to live to like 150…Nah.), I enjoyed Sardi’s content and always learned something.
It was the fifth paragraph that got my attention. Hmmm. I kept going. Further along, a quick reference to — of all things — ferritin. I’d never heard of the stuff before last Nov/Dec— or had I? Immediately after this is the bold subheading for a new section: “Iron is the malignant spirit of aging”. The rest of the article focuses on iron overload. Are you kidding me? As I’m reading, I start to think, “Wait a second…I’ve heard about this. Was it Sardi?”
Turns out it was. Turns out I had read about iron overload — in 2015! Sardi had written about it three years before my husband’s diagnosis. The article focused on men and increasing testosterone levels. Maybe that’s why I “filed” it — not that I have anything against testosterone. In fact, I’m a big fan.
I digress. I go back to the Sardi archive, find the article, and re-read it. Holy crap. It’s all there, including a reference to rice bran. Rice bran? “IP-6?” WTH is “IP-6?” The next phase of my mission has been launched for me. I’m off to find out everything I can about this stuff. P.S. Ordered Sardi’s book, “The Iron Time Bomb,” that same day.
Dr. Abulkalam Shamsuddin & IP-6
While waiting for Sardi’s book, my research brought me to Dr. Abulkalam Shamsuddin, M.D., PhD. His decades of research has focused on cancer. I’ve forgotten at this point how it brought him to “IP-6” (inositol hexaphosphate), but thankful it did. He ended up writing an entire book devoted to IP-6.
Going back to Sardi and the 2015 longevity article, a chart from the article shows the remarkable chelation effects of rice bran IP-6 phytic acid:
For those noticing that sodium tripolyphosphate comes in a strong second to the phytic acid of rice bran, it’s synthetic. It was developed in a lab for use in maintaining moisture — in fish. The EDTA is also synthetic. We’ll take the phytic acid from the rice bran, thanks.
Having been in touch with Bill Sardi via email on other topics, I reached out to him after the diagnosis and re-reading his material. I told him we ordered his book, which my husband devoured. He was very kind in several follow-up emails as I/we navigated how best to proceed, what to keep in mind, etc., while managing my husband’s condition. Very grateful to him for that.
Corresponding with Bill, more reading on my own, including the reviews of those who had used Dr. Shamsuddin’s formulation, “IP-6 Gold” convinced me that we needed to try it. The reviews were very encouraging, specifically for its ability to chelate excess iron. Besides, at this point those once-a-week bloodlettings, while helping, were making my sweetheart feel like crap. Didn’t look like the IP-6 could kill you, so worth a try. I ordered our first jug of IP-6 Gold powder from www.iherb.com — where I’d read all those reviews — on January 26, 2019.
Hubs skipped a week’s “donation” after his second one in January. At the appointment for his third one, January 23 his levels came in at 1,232. So, yes, the bloodletting was working. Since December, a drop of almost two hundred points, so definitely hitting more than average. He decided at that point to back off for good on the once-a-week and try for every ten days or two weeks. That much blood “donating” can make you feel awful. Doc not so happy.
iHerb.com delivers really fast, so hubs was able to start the IP-6 on January 29. He began his ritual of one scoop in water in the a.m. and one in the evening on an empty stomach. He had about two weeks of using the IP-6 before his next ‘letting on Feb 5. Would it have any effect after only two weeks? He got his levels checked before the phlebotomy: 855.
The Luck of the Irish?
From 1,232. To 855. In about two weeks. Gotta be a fluke. Keep going.
Final February 2019 levels? 777. Three phlebotomies between the start of IP-6 at the end of January to the end of February and a drop of 455 points. Probably just a coincidence. Besides, he cut out beer (He may have cheated; can’t say for sure, your honor.) and we cut back on red meat — but just a little. ;) Might be it’s all working together and the impact of phytic acid from rice bran is just, well...coincidental.
From Mar 2019 to Apr 2019, hubs had five phlebotomies. At check-in on May 2, 2019, his level check before the phlebotomy? 355.
Three hundred thirty five. This is kinda starting to look like not a fluke. He kept to the twice-a-month regimen (not every week, doc). By July, he cut back to once a month, which he maintained through the rest of 2019.
Ferritin levels at check-on on Feb 3, 2020? 120. Every day during this time, he maintained his ritual of two “doses” of his mango-flavored “IP-6.” One scoop in water in the morning, first thing. One in the evening a couple of hours after dinner.
There are 59 weeks between December 14, 2018 and February 3, 2020. Had we followed the hematologist’s recommended schedule of once weekly phlebotomies, that would mean around 59 phlebotomies and a very miserable husband. It would also have meant that in half that time, he would have had about 26, 27 phlebotomies.
Instead, he had 26 in more than a year’s time and still managed a drop from 1,436 to 120. His numbers fluctuated (as these things do) here and there, but the trajectory was all downhill. Hubs skipped Mar 2020 altogether (the start of the “big stupid,” as he calls it) and had his last phlebotomy in MA on Apr 7, 20202. Ferritin level? 159. Doc never attributed these drops to IP-6 even though she really couldn't explain them. The luck of the Irish?
Because of the “big stupid” and the big changes that happened in our lives as a result, hubs went from his Apr 2020 phlebotomy and ferritin level check to his first blood test in December 2021. Ferritin? 209. (This was only a full iron panel as part of blood work with a lab here in Florida. It did not include a phlebotomy.)
My sweetheart would like to have a phlebotomy because they do aid in this process, but he has concerns (even in Florida) of interacting with the “medical industrial complex,” as he calls it. We’ll do some poking around to see if we can find ourselves a real doctor. (Well, we did, but her practice is booked solid. I wonder why…)
Normal living, including a couple of beers or red meat here and there, and IP-6 — now only once a day in the a.m. No phlebotomies since Apr 2020 and he still comes in at 209 more than a year and a half later. In someone whose body is programmed by a genetic mutation to store iron. And did.
Phytic acid from rice bran? Really?
In Part Three, I’ll share how trying out a teeter-totter at Relax the Back ended up with yours truly getting referred to a back surgeon. And what she did about that.
Sadly, Bill passed away in 2022 — under somewhat suspicious circumstances in a California hospital. You can read the story here: https://hbnshow.com/we-lost-bill-sardi/
Normally, getting to an appointment at Beth Israel Deaconess meant allowing time for drive time on Route128 (always a horror show) and drive time in the parking garage to find a spot. On this day, hubs got there in plenty of time given very light traffic and found the place practically empty. Unheard of. Instead of circling around for a space, he found one immediately right next to the elevator. The place was a ghost town. He was in and out. Saw no one sick and dying and the nurses looked bored, he said. The great “pandemic” of 2020.
Wow. What a great story. Read it out loud to my wife and she loved it too. So very glad your husband is doing well. Looking forward to reading your back story. I herniated L4-L5 way back in the day. I was told I needed surgery to correct it - one "doctor" told me my left foot would never work properly. Of course, they were all wrong. I worked on core strength using Pilates and used Egoscue for structural balance. Read Dr. Stuart McGill's books on back health and the injury mechanisms involved. Most doctors I have met are clueless about the subject and they recommend things that can hurt a person or aggravate the condition. I can't wait to read part three!! Thanks SheThinksLiberty! have a great day.
A wonderful story, and perhaps a reflection of a silver lining in the entire COVID disaster storm.
The silver lining I potentially see is the world moving away from the pharmaceutical driven S.A.D. diet. (Standard American Diet) Yes, before there was SADS, there was SAD. Perhaps an even brighter silver lining will be a spiritual turning. "Pain is a prod to remembrance"
Just to share here is a known for thousands of years, catch all healing method...
https://www.youtube.com/watch?v=RuOvn4UqznU