I started the Shoemaker Protocol in November 2013 with 625mg of the cholesterol drug Welchol (colesevelam hydrochloride) 4x a day while we waited for the blood test results to come in. My fatigue got frighteningly worse since it affects absorption of other medications and supplements. I had to change the scheduling to 2 tablets 2x a day and well away from my other medication times. Every month I tested my Visual Contrast Sensitivity on a free website. Visual Contrast Sensitivity (VCS) checks visual acuity with light and dark gray lines on a gray background. Mold/biotoxin illness patients who have active neuroinflammation have problems differentiating the lines from the background. There are quite a few free and paid VCS testing sites out there so find one that you are comfortable with. I asked my eye doctor about VCS testing but currently his clinic doesn’t offer it though the next computer upgrade may include it.
My initial blood test results came back in December. I was pleasantly surprised that I had fewer mold/biotoxin biomarkers than expected which meant that the protocol wouldn’t be quite as complicated as it could be.
- Human Leukocyte Antigens (HLAs) help the immune system tell the difference between body tissue and foreign substances. Genetic testing of the sixth chromosome (HLA DR) indicates susceptibility to mold/biotoxin illness and how sensitive a person is to the illness. My test result came back with the same two alleles on each gene which means I inherited the same gene sequence from both of my parents. I have DRB1 of 15, DQ of 6, and DRB5 of 51. This gives me high susceptibility to chronic Lyme disease and a lesser susceptibility to molds and other biotoxins. This explains how I was able recover from my other major mold/biotoxin exposures once I was out of those environments until I reached my body’s tipping point and I couldn’t recover without medical intervention.
- Matrix metallopeptidase 9 (MMP-9) delivers inflammatory elements in blood into subintimal spaces. From there inflammation is delivered to other areas of the body like the brain, lungs, muscles, nerves, and joints. It’s a main biomarker for systemic inflammation. My result was high at 780 ng/ml. Normal range is 85-332 ng/ml.
- C4a is one of the first and major indicators of mold/biotoxin illness and systemic inflammation from innate immune responses. My test came back very high. Normal range is 0-2830 ng/ml. My result was 11492 ng/ml.
- My Human Transforming Growth Factor Beta-1 was high. TGF Beta-1 is a protein that has regulatory effects throughout innate immune pathways. It helps control the growth and division of cells, the process by which cells carry out specific functions, cell movement, and the self-destruction of cells. My result was 5820 pg/ml. Normal range is 0-2380 pg/ml.
- Melanocyte Stimulating Hormone has multiple anti-inflammatory and hormonal regulatory function. MSH deficiency means increased susceptibility to mold illness, ongoing fatigue, pain, hormone abnormalities, mood swings, and much more. My result was very low at less than 8 pg/ml. Normal range is 35-81 pg/ml. Currently there are no drugs on the market to improve MSH levels.
- There were also a couple of tests in the von Willebrand’s profile where the results were far from normal. Coagulation Factor VIII was 214 H. Normal range is 50-180. And Collagen Binding Assay was >400 H and normal range is 45-198. This means there are errors in my body’s clotting ability. These errors can be inborn/genetic or acquired from illnesses like autoimmune diseases. From my genetic tests I already knew I had high susceptibility to blood clots, especially from medications like hormone birth control, so this was confirmation of that.
It took three months for my VCS testing to come back as normal before I could stop taking Welchol and start the next step. I took 45mg of the diabetes drug Actos (pioglitazone hydrochloride) for two months before my MMP-9 levels dropped down into the normal range. Due to my clotting factor errors I couldn’t take the drug recommended to lower C4a so we skipped that step. In April I started 25mg of the high blood pressure medicine Losartan (Cozaar) to lower my TGF Beta-1. In the intervening months while I was working on the first steps of the protocol my TGF Beta-1 level nearly doubled to 11,020 pg/ml. Losartan increased my fatigue so I had to adjust the time I took it to evening rather than morning and add a liquid iron supplement in order to stave off the anemia symptoms it caused.
I went off Losartan in May while waiting for my test results and felt better than I had in years. There was a huge decrease in my fatigue and, while I still had a bad hour or two each day and the week before and during my menstrual cycle, I could leave the house every day for a few hours and I could work in my garden with rest breaks every 30-45 minutes. I went back on Losartan in June when my test results showed it had only decreased by 3,000 pg/ml. Unfortunately my fatigue increased again and I’ve been on the drug since then because my TGF Beta-1 levels keep jumping up and down.
When my October tests showed my TGF Beta-1 and MSH levels were worse than they were the month prior, I started looking outside the Shoemaker Protocol for other options. A chronic Lyme specialist recommends the supplement Propolis to his patients to increase MSH; I added a 500mg capsule once a day. Several studies show a low protein diet lowers TGF Beta-1 so I moved from the high protein, grain free/Paleo diet I’d been doing since last November to a low protein diet. Studies also show that the high blood pressure drug Vasotec (enalapril maleate) combined with the hyperparathyroid D2 analog Zemplar (paricalcitol) lower TGF Beta-1. I’ll discuss all options with my MD when I see her later this month. Lowering my TGF Beta-1 and increasing my MSH are the last steps in the Shoemaker Protocol and it looks like fixing those two things will return me to full health.
Recent changes have greatly increased my energy levels and stamina. I feel better than I did in May and am up to 12 miles a day on my recumbent stationary bike. It’s hard to know how much of the improvement is from seasonal changes (I always feel best in spring and fall and worse in the summer), dietary changes, drug changes or the addition of Propolis, but it’s very nice. I’m hoping for continued progress and energy stability; only time will show if I have them.