Reversing the Incurable: Part 2
Trying everything, and then some
Almost everything.
I certainly didn’t try cyclophosphamide-assisted treatment. Yes, cyclophosphamide — the kind of name that brings back memories of my underwhelming performances in high school (and college) chemistry. Perhaps you’ve heard of it as its corresponding brand, Cytoxan. Yes, Cytoxan — the kind of name that says it won’t be taxing and toxic at all* to your body, and with minimal side effects.
*it is
What is Cytoxic— I mean Cytoxan?
Once upon a time, this was the next and only step to take for treatment according one of my former nephrologists. It’s a chemotherapy-strength medication that works as an immunosuppressant. It’s incredibly strong. Oh, and the only apparent regimen for me was that it had to be taken in conjunction with prednisone steroids. That also meant a continuation of strong antibiotics. I would have also had to add another medication to that to prevent bladder infections. And this was after two rounds of failed immunosuppressant treatment. Jesus wept.
So sparing the details of the awkward rest-of-the-meeting with the doctor, I decided—without question—an absolute no. And that was that last time I saw that doctor.
Same rhetoric, different doctor
With the help of my mother, I was able to seek out another nephrologist, who although suggested the same treatment as the last doctor, wasn’t so adamant about it. Let me say now that this doctor worked in one of the most respectable nephrology departments in the area. So naturally, all they could do was order blood work every few months and monitor the numbers until the inevitable. I’m still seeing him to this day.
“Why not try another nephrologist then?” Well, I’ve already tried one of the best doctors in St. Petersburg beforehand. His solution? Immunosuppressant treatment, with the added bonus of pravastatin — a pill for high cholesterol. The bright side to that visit was that their cafeteria is wonderful, provided you’re not following any special autoimmune diet. More on that later.
I’ve even gone to the nephrology department at the Mayo Clinic in Jacksonville, Florida. The summary of that visit is more or less comparable to the heading of this section. But at least I got to knock visit Jacksonville off my bucket list.
Different doctor, different rhetoric
Plus a few specialists who don’t have medical degrees. But at this point, why do I care what piece of paper is on someone’s wall?
This is significant turning point. I think this all started with my mother and her coworker having a chat about my health, and the coworker brought up the name of a retired infectious disease doctor. I won’t mention his name directly, but he did write an interesting book that opens up new doors for autoimmune sufferers like me.
This doctor was difficult to reach, for a variety of reasons, but with my mother’s persistence, she did. And while I wasn’t in on their conversation, there were three main points he made regarding my health.
- Immunosuppression WON’T work
- Get a live blood cell test
- Find an infectious disease doctor
Now you can criticize all you want about the list above. This opened up new doors, and I’m forever thankful. I actually did do a live blood cell test with a non-M.D. specialist, which was really cool. It’s quite a trip to see the microscopic components of your blood on a screen. After her analysis, she suggested that I start a diet of absolutely no sugar of any kind. And we’re just talking about processed sugar, we’re talking about any food that transforms into sugar or any food that naturally contains sugar. That means no fruit, breads, or rice.
I lasted a week.
She referred us to a naturopathic D.O. who could provide further therapy, and nothing toxic either. Her aim was to boost the bloodstream with all the B vitamins along with amino acids (protein) via IV. This was done on a weekly basis. We also had the assistance of a retired nutritionist, who may as well have been a microbiologist with the way he spoke.
He ordered what was my largest collection of blood work to date and meticulously analyzed it once the results were in. I’m not going to even try to replicate our discussion as it was way over my head. But I trusted this guy knew what he was talking about. His regimen was to have me on a plethora of high quality supplements on a strict schedule along with a gluten-free, dairy-free, and low-sugar diet. Starting to see a trend?
While I was generally alright with my discipline on the supplements, I also only lasted a week with the diet. I just couldn’t give up bread — especially croissants. I disobeyed him on that front, my blood work did not improve, and I was becoming unconfident about these methods. Keep in mind that my numbers were still pretty good compared to now, with my GFR being almost twice as high as it is now. Oh, how stupid of me not to listen. I still wonder to this day what may have been had I had the same discipline then as I do now.
Subsequently, for reasons related to my dreaded work schedule at the time—and among other things — I stopped seeing this doctor.
So are we in the present now?
Not quite, but almost. A lot of time passed since that last meeting. And in that time I’ve come to terms that I may just deteriorate further into kidney failure. So I just went about life.
[insert montage to convey time passing by]
Then with the mysterious ways of this universe, the dermatology office my mother works at was paid a visit by an interesting character, who happened to be a doctor. And this doctor happened to be an infectious disease doctor, more or less. He was gracious enough to stand there with my mother looking through all of my medical records since tracking back to my vasculitis in 2013. That encounter lasted for an hour.
This character— and quite the eclectic one — I speak of goes by the name of Dr. Marvin Sponaugle. I’ll dedicate my next piece detailing his relationship with me and what I’m doing in his clinic, but this is the first time in a long, long time that there was a focus with my ailments. This was the first time in a long, long time that my mysterious condition became less mysterious.
This was the first time in a long, long time that I had any confidence in a doctor. And while I know nothing is certain coming from anyone’s mouth, I finally had hope.
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