My Story Is No Mystery; Its History
Note: This is a correspondence with the oncologist I consulted after Richard’s initial identification of my skin condition. I am so grateful things played out this way and as well as they have. And I appreciated not being pressured into further treatment. Enjoy.
In September of 2017, I went to my primary care provider to speak with her about what I thought was a systemic fungal infection. The main symptoms of concern were a consistent itching from head to toe and some aggressive-looking cystic acne on my legs and arms. Also, in the months leading up to my doctor visit, I had been experiencing what I described as feeling like I was wearing someone else’s skin or something like a saturated wetsuit. I was also experiencing quite a bit of tingling and numbness in my extremities. You could say that I felt like there was a general overall feeling of inflammation or edema throughout my skin, especially in my feet.
She wanted to get me started on some scary-sounding medications, but I wanted to try and make some dietary changes first to see if that could have a positive effect and good headstart in overall treatment. The main reason for wanting to take this dietary course of action first is that I had experienced all of this to a lesser degree before in 2012 and had success by making a dietary change. At that time, I did not have medical insurance and googled “itching head-to-toe allergy,” The first thing that popped up was celiac/gluten allergy. I thought that it would be easy enough to cut out all gluten for a couple of weeks and see if there was any improvement. Sure enough, in a couple of weeks, I felt a lot better and had even lost my love handles. I looked and felt better. All seemed good.
In 2014 I found myself with medical benefits again and went to the doctor to get some bloodwork done. To my surprise, I found out that I did not have celiac or even a gluten allergy; however, I was hypothyroid and began taking Levothyroxine to get my TSH levels back in order. I still maintained my gluten-free diet to keep my weight down, and it wasn’t so bad once you’re used to it.
A little more past medical history. I was born with VUR. Vesicoureteral (ves-ih-koe-yoo-REE-tur-ul) reflux is the abnormal urine flow from your bladder back up the tubes(ureters) that connect the kidneys to the bladder. Normally, urine flows only down from your kidneys to your bladder. Vesicoureteral reflux is typically diagnosed in infants and children. The disorder increases the risk of urinary tract infections, which, if left untreated, can lead to kidney damage.
I had corrective surgery twice for this at ages 6 and 9. The first time was unsuccessful. Supposedly it worked the second time, but I have in the past had my doubts, considering they stopped doing the procedure in the early ’80s due to its limited success. I’ve often wondered if it later failed like the first procedure. Unfortunately, these two procedures and all subsequent catheterizations and imaging sessions with radioactive dyes literally and figuratively scared my views of any possible future hospitalizations. Also, whether from the procedures or simply from the VUR, I never had a sensation that told me it was time to urinate. So when I did know to go, it was because of bladder pressure and dull pain in my left kidney. And when I did go, it was large volumes of urine. Often I would wake up in the early morning hours with a stabbing pain in my left kidney. Once I made my dietary changes in September of 2017, these problems have resolved.
As a result of the VUR, I also experienced varying degrees of urinary tract infections or what I thought may have been yeast infections. As a result, I quickly learned that curbing all carbohydrates in my diet made for a speedy recovery, which led me to attempt dietary and behavioral changes to remedy this thing that reared its ugly head in 2017. It made sense to me, considering I had experienced many past dietary and behavioral modification successes when presented with health challenges.
So in September of 2017, I started a strict ketogenic diet, no fruit, starches, or refined sugars, and limited my caloric intake to about 1500 calories a day to eliminate any excess systemic fungus fungal infection or bacterial overgrowth. Right off the bat, I lost 20 pounds. I went from 152 pounds to 132 at a height just shy of 6 feet.
It was not a good look for me, but my body began a transformation over the first three months necessary for the healing that was to follow. It also became apparent that I had a lot of inflammation throughout my body, especially in my prostate area. It felt almost awkward to sit for the first few months. Rather suddenly, something about the size of a tennis ball had disappeared. That’s all back to what I would now call my new normal.
Having bottomed out and remained at 132 pounds for a couple of months was a little troubling, but what has followed is me gaining a pound a week over the last year, and I am currently at a lean 174 pounds. And it would appear to be all muscle that I have gained back from the diet and general calisthenics.
My 46-year old body looks better and more like a gymnast’s body than it ever did at any point in my life, even when I was a gym rat or teenager.
Regarding my skin and what I thought was aggressive acne is a different story altogether. I hadn’t bothered documenting any of it until about 45 days in because it was all relatively uneventful other than just being perpetual and bothersome. After about 45 days, these ulcerations proceeded to get larger as they, whatever they were, started working their way out of my skin. As I continued removing what was clearly more than just aggressive acne, I felt it would be good to start taking pictures of it all and some at 30x and 60x magnification.
At this time, roughly November 2017, I started spending a lot of time pouring over medical journals looking for better answers and, as a result, became very familiar with the National Institutes for Health and how to better differentiate between good information from bad.
When I wasn’t researching all this, I became very good at patiently and consistently removing all diseased tissue from my legs and arms. Its relation in location to prior soft tissue injuries struck me funny. I thought to myself, why would the area of a past injury be prime real estate for the sites of these skin manifestations? Which signaled me to keep in mind the lymphatic system since it foreign debris from our soft tissues, even passing through several more nodes using its tubular network before dumping it into the bloodstream to clear it from the body through the liver.
What struck me was how much these growths I had removed looked mycelial in form and even, in some cases, like mushrooms specifically or even patches of them. You’ll see some in the pictures. Remember this when it comes to the diagnosis of Mycosis Fungoides, the most common form of Cutaneous T-Cell Lymphoma.
The disease, however, is not a fungal infection but rather a type of non-Hodgkin’s lymphoma. Now I understand why the name Mycosis Fungoides could be misleading—loosely meaning “mushroom-like fungal disease,” so named because the French dermatologist Jean-Louis-Marc Alibert described these skin tumors as having a mushroom-like appearance.
Finally, at around the 6-month point, my thinking began to shift from systemic fungal infection to the possibility of cancer. According to the World Health Organization’s definition of cancer, I even started referring to it as cancer. “Cancer being the uncontrolled growth and spread of cells, can affect almost any part of the body. The growths often invade surrounding tissue and can metastasize to distant sites. Many cancers can be prevented by avoiding exposure to common risk factors, such as tobacco smoke. In addition, a significant proportion of cancers can be cured, by surgery, radiotherapy or chemotherapy, especially if they are detected early.”
And then, “Neoplasia(Tumor) is an abnormal and excessive tissue growth. The growth of neoplasia is uncoordinated with that of the normal surrounding tissue, and it persists in growing abnormally, even if the original trigger is removed. This abnormal growth usually (but not always) forms a mass. When it forms a mass, it may be called a tumor.”
Sometime in early 2018, probably about March 15, I began referring to each location on my body that was more significant than 1 cm in size as a tumor and that they were part of a larger, possibly unified form of cancer. It still didn’t sink in, though, that I should be afraid of it or that I needed to go back to my doctor since I wasn’t having any problems with infection and had been making good progress.
About that same time, in the middle of March, all of the ulcerations on my legs finally cleared, only leaving behind what appeared to be melanin stains ranging in size from 5mm-15mm. Some are still visible, but they are fading with time.
At that same time, the ulcerations on my arms that had remained somewhat static over the months appeared to grow as they came to the surface, becoming more defined at the edges. The one that was as big as my thumb had been growing there for many years. It took the longest to express, and I imagine at one point was seated comfortably in the stratum spinosum. I thought it was a muscle that looked different from my other arm for these years. I was wrong.
My left arm was worse than my right. There was probably four times the amount of cellular proliferation or tumor material compared to the right. There was also a lot of pain at the upper end of my left ulna, where it meets the elbow. There is still a little bit of pain, but it has subsided significantly since last year. Another thing about that area was that the skin on my left forearm from the tip of the ulna traveling down about 4 inches towards the wrist felt like it had anchor points or attachment points from the tumor deep down into the dermis. It also quite frequently felt like there had been nails sticking out of it through the muscle bed or drywall screws sunk through the muscle into the bone. I gained a new respect for pain.
However, that has all subsided as the tumors have fully resolved.
Overall it took about 6-7 months for that tumor to come out. It was the last to express itself fully. And at this point, I appear to be clear of them from head to toe. The quality of my skin from head to toe has also improved vastly. I rarely get scratches anymore, and I don’t bruise anymore. It honestly frightens me to consider how hard something would have to hit me for me to bruise. And I used to bruise pretty easily.
And here are a few more things that have remedied themselves from the change in diet.
I used to have arthritis in my hands and my hips. That all completely went away within six months of the dietary change. I now have the flexibility of a small child or yoga instructor. I can wake up first thing in the morning now, squat down, put my elbows on the ground, and stand back up again with no hesitation.
I was also at the point where I had visible balding on the crown of my head. And my facial hair was always more sparse than dense. Well, that has all changed. All of my hair has come back on the top of my head, and most all the grey hairs have gone away, and my facial hair is about double the density it used to be.
My blood pressure before all this was typically 135 over 95. Now it is consistently 105-112 over 65-70. Never higher. And my heart rate is a very consistent 52bpm.
I used to have tinnitus in my left ear, TMJ on that same side, and my sinus’ was always a wreck with regular bleeding. No more nose bleeds, no more TMJ, no more tinnitus, my sinuses are perpetually clear, and I can smell everything x 10. And my lungs feel brand new to boot.
In the past, I would sneeze the wrong way, and out would pop a hemorrhoid. I haven’t had one in 12 months now, no matter how hard I push. And I don’t even sneeze anymore either. Weird.
Night sweats. I used to ruin pillows and mattresses. Not anymore. And about sleeping. I used to sleep sporadically and horribly for the most part. Strangely these days, my circadian rhythm righted itself, and I’m comfortably sleeping 7 hours a night, waking at around 6 AM or before rather consistently. I used to get up 2-3 times a night to urinate. Now I go about 7 hours, if not more, till morning.
And I used to have many more moles, freckles, age spots, etc. Those have all cleared as well.
It’s like that joke about a country song played backward. Who knows, maybe I’m on to something, and I will make it to 144 years of age without physically aging that much more.
Ultimately, what led me to the diagnosis of Cutaneous T-Cell Lymphoma aside from the presentation, was a 79-year-old gentleman I met that has been in treatment for it himself for the last seven years. I told them about it while giving them a ride(Uber), and his wife kept saying, “Richard, that sounds like you; he’s saying all of the same things you used to.” He then asked to see my arms and was convinced that I had the same thing. He then shared his testimony with me, and it was all strangely similar.
As I understand disease, it is a progressive process that has many stages, ultimately ending in what we call cancer. With my current state of health and its continued positive progress, I don’t feel any urgency to have any biopsies taken or other tests done at this time. I will, however, treat this as though I have diabetes for the rest of my years.
It took me nine months to get over my cravings for sugar, and I have no interest in going back.
What I have written should be enough to get you started. Based on what I have disclosed in writing and what you see in the pictures, I would appreciate your thoughts and feedback.
–RESPONSE–
Michael, thanks for the detailed email. How have you been removing the lesions and/or skin? Are the open sores from your self-surgeries, or is that what the illness results in? The pictures seem to fit MF and CTCL, but I would, myself, see an[OTHER LOCAL] oncologist and listen to what they have to say as far as the diagnosis and what they recommend for treatment. Some of these can be treated topically, which may clear it up faster than what you are doing.
I am not surprised about the overall health changes you are experiencing with the diet change. If you haven’t read wheat belly or watched forks over knives, they speak to the same thing. Wheat, not so much gluten, is a pro-inflammatory grain and, together with sugar and animal products, can result in many body ailments that people can experience.
You sound like you are seeing this first hand. So my thoughts are this. See an oncologist in your area and get their thoughts and treatment plan for which you can then decide to follow or not, but I would want to make sure this isn’t something more problematic/worrisome in the spectrum of cutaneous T cell lymphoma; some of which can progress very badly and wouldn’t want that to turn out for you. As well, I imagine your family would like to know you sought the advice of a trained physician.
Good luck and let me know what you decide.