Tag Archives: chronic fatigue

My experience with the Shoemaker Mold/Biotoxin Protocol

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.

Mold and Me (part 4)

Integrative Medicine was unlike any medical specialty I had previous experience with. My first appointment was scheduled for 90 minutes. Follow up appointments were a standard 30 minutes but 45, 60, 75, and 90 minutes could be requested. I returned the huge packet of health information they sent weeks before my appointment so the doctor had a chance to get familiar with my medical history prior to seeing me.

We went over my immediate health issues and the test results from the nerve pain specialist and my last blood tests. I was given homework: an extensive medical and environmental history that included my parents health going back six months prior to my conception. My MD didn’t promise miracles but improved quality of life. Considering 99% of my time was spent lying on the couch if I wasn’t sleeping in bed, any improvement would be better than continuing to decline.

Based on my blood tests and Small Fiber Neuropathy, my MD took me off inactive cyanocobalamin (synthetic B12) and folic acid (synthetic folate) and put me on bioavailable methylcobalamin (methyl B12) and 5-MTHF folate (5-methyltetrahydrofolate). We started me out on a small dose since I didn’t react well to the synthetic vitamins and I slowly increased them over the course of six months to a year. She also recommended I read Terry Wahls’ website and books. Dr. Wahls is a family medicine MD who healed herself of secondary progressive MS using food. She’s now an Integrative/Functional Medicine doctor. I found her book “Minding My Mitochondria” especially helpful. Healing with food alone doesn’t work for me but there are great possibilities in it and her approach to diet from a scientific view is inspiring.

At my next appointment we went through my extensive medical history. My MD suspected that my dad’s tours in Vietnam played a part in my health issues along with my extensive antibiotic use and the mold and VOCs I’d been exposed to. Six months on Prednisone certainly didn’t help, either. She recommended in depth nutrient testing along with heavy metals and known toxins. The tests required blood, urine, and stool samples and were shipped to an independent lab. Results took about 6 weeks. I was also tested for the common chronic fatigue suspects: Lyme Disease and known viruses like Epstein-Barr and HHV6.

My virus and Lyme tests were negative but the other tests showed a lot of deficiencies and a few environmental toxins. I was in critical need of Alpha Lipoic Acid and Thiamin (B1) and had low levels of Vitamin C, Riboflavin (B2), Folate (B9), Cobalamin (B12), and Glutathione. My mitochondrial function wasn’t quite critical but wasn’t good, either. Neither was my toxin exposure (specifically styrene, aka plastics, and MTBE, a gasoline additive). My body’s ability to methylate was compromised and I had elevated levels of bacterial markers and borderline yeast/fungal markers. Out of the six beneficial gut bacteria they test for I was missing three.

The results gave us plenty of data to start treatment as well as a diagnosis of acquired Mitochondrial Dysautonomia. Besides supplements to improve the nutrient deficiencies, it was recommended I add more plant based antioxidants, probiotics, and Omega 3 fatty acids to my diet. I had to stop using Teflon cookware and, while freezing and storing food in plastics was okay, reheating wasn’t. MTBE was most likely in the water supply so I couldn’t eliminate it completely from my diet but by improving my methylation with supplements and diet I should be able to get it out of my body.

I spent months slowly adding and increasing supplements and reading all I could about methylation and mitochondrial dysfunction. I added Acetyl L-Carnitine to improve energy production and within 4 weeks my Spasdmic Dysphonia was gone as was most of my mental fatigue/brain fog. Six months after starting treatment my neuropathy and IH headaches had improved enough that I no longer needed pain medication. A year later I weaned myself off Nortriptyline. I got approval to add PQQ and CoQ10 and within a few weeks my fatigue had improved enough I could leave the house every 3 days instead of once a week if I was lucky. I got a prescription for 3mg of Low Dose Naltrexone and within a month my sleep had improved to the point that 85% of the time I awakened on my own before my 8:30am alarm went off. That has improved to 98% of the time within the last year.

I ordered a genotyping kit from 23andMe and, when the results were in, I used 23andYou to get the most out of my raw data. Isolating the methylation genes was particularly helpful to me. I had two heterozygous mutations in the MTHFR gene that greatly decreased my ability to obtain folate and B12 from food. Add that to the decreased bacteria in my gut from antibiotics and Prednisone and it was no wonder I got Mitochondrial Dysautonomia from nutrient deficiencies. I also had a COMT gene variant that affects the reuptake of dopamine and causes unstable moods. Treatment was either lots of green tea or the amino acid L-theanine. I added a new supplement to my daily regime.

Progress stalled and then went backward as I approached another summer. My health was much better but the debilitating fatigue was clinging on. I started allergy shots in July 2013 after learning I was allergic to a number of things that are very prominent in this area: grasses and filbert/hazelnut trees. I kept tweaking my supplement regime, increasing or adding things to get the best results. Progress had slowed to a crawl but I was still inching forward.

Two years after leaving the coast I learned that the basement I lived in 2011 had been infested with mold from a broken pipe in the wall under the closed in staircase. This revelation lead me to Dr. Ritchie Shoemaker’s books and website. My MD agreed to use me as a guinea pig for the treatment protocol. It’s meant lots of blood tests at out of town labs but again I had abnormal results, this time in inflammation biomarkers that no doctor thought to check. I have a HLA-DR haplotype that makes me particularly sensitive to chronic Lyme disease and to a lesser extent mold and other biotoxins. With mold/biotoxin illnesses the rule seems to be that the more exposure to them, the quicker one gets sicker. This certainly explains why my sophomore year in college I got so sick so fast after moving back into the moldy building I lived in my freshman year and why my health declined so quickly after I left my moldy apartment for an even moldier basement.

I’m at the last phase of the Shoemaker Protocol, lowering my Transforming Growth Factor Beta-1 and increasing my MSH, and finally this month I feel like there’s been a big breakthrough. Only time and more blood tests will tell if it’s from the mold protocol or from other changes I’ve recently made. I’ll discuss my multifaceted treatments further on in this blog. For now I’m very hopeful about the future. My health has improved immensely in a relatively short amount of time and an end to this dark, painful segment of my life is within sight.

 

Mold and Me (part 2)

Between 1993-2001 my health was okay. I had problems but nothing that impeded my ability to go to school or work. I preferred late morning or afternoon shifts instead of mornings, I had several bouts of systemic yeast infections, I had lots of issues with food sensitivities, and most winters I got bronchitis at least once. Fibromyalgia wasn’t a word recognized by the general public at that time so I simply told people I had a sleep disorder.

In 2001 I changed jobs and started working at a marine hardware store around VOCs from industrial paints and resins. My desk was in the marine paint storage area and the off-gassing was overwhelming. That winter I started getting giant (3 inch) hives every time snow touched my skin. It was painful, disconcerting, and a puzzle to doctors.

In 2003 I moved away from snowy Alaska to the more temperate Oregon Coast. My apartment had evidence of minor water damage in the past but it wasn’t anything I worried about. Shortly after moving I was diagnosed with minor hypothyroidism and put on Synthroid. A year later I was diagnosed with tachycardia. In 2007, after nearly a year of extreme fatigue, I was diagnosed with sleep apnea. By the end of 2008 I had problems controlling my Fibromyalgia symptoms. I didn’t react well to standard or experimental treatments so by mid-2009 I had to take short term medical leave in order to get a handle on my pain and fatigue.

In the midst of my dealing with another major Fibromyalgia flare the people in the apartment next to mine were evicted. The apartment manager found water damage and mold throughout the first floor of the apartment from a leaking washing machine. Mold was growing at least a half inch up the walls and not only did the carpeting have to be replaced, so did the subfloor.

I was off work for almost 3 months and it took another 3 months for me to control most of the pain, fatigue, and sleep issues that accompany Fibromyalgia with the help of a Naturopathic Doctor, an acupuncturist, a massage therapist, and my own intuition. Going back to what the MD in Alaska told me in 1993 about the link between unrefreshed sleep and pain gave me something to focus my energy on improving and it worked. By December I only experienced increased pain and fatigue during the week before and during my menstrual cycle.

Then the headaches started. They were unlike any headache I’d experienced before. Not migraines since they originated at the top of my head. My head would even get hot to the touch from them. I thought they were thyroid headaches at first since my mom has similar headaches when her thyroid levels are unbalanced. I returned to my primary care physician and switched back to Synthroid instead of the T3/T4 compounded thyroid med my ND put me on in June.

By March 2010 we knew something was seriously wrong. Migraine meds didn’t help and pain meds barely touched the pain. The headaches kept increasing in intensity until the left side of my face and my left arm went numb and it felt like bugs were eating my brain. An MRI was ordered and, after it came back as normal, my PCP sent me to an ophthalmologist. After waiting for hours to see him, he diagnosed me with Pseudotumor Cerebri/Intracranial Hypertension. There was too much fluid in my skull and it was pushing on my optic nerves. It could cause blindness as well as all the symptoms of a brain tumor. It was March 26th, 2010.

I attempted to work with a constant headache and while on pain meds. It was stressful and difficult but I was able to split my lunch hour into two half hour segments so I could lay down and rest for a short time in the afternoon. Then on April 15th I started stuttering. It sounded and felt like I had had a stoke. By the end of the next week it got so bad I couldn’t speak at all without it feeling like something was stabbing me in the brain. I left work on my lunch break on April 23rd and never returned.

Mold and Me (part 1)

Learning in September 2013 that the basement I lived in from November 2010 to September 2011 was teeming with hidden mold opened up a whole new avenue of treatments and health implications.

I’m not unfamiliar with mold. I grew up in a moldy trailer, went to a moldy school, lived in a flood damaged house, lived in a moldy dorm, and moved in 2010 to get out of a moldy apartment. I’d also been diagnosed with Sick Building Syndrome several times, an illness which now falls under the biotoxin umbrella of Mold/Biotoxin Illness. My entire life was spent in or around mold and biotoxins. It’s a credit to my admittedly faulty genes that I managed to partially recover from each major exposure until I was disabled in 2010 at age 36.

From infancy to age 10 I had allergies, asthma, food sensitivities, sleep issues, and fatigue. I had a lot of respiratory illnesses. My health improved after we moved into a new house and I started getting allergy shots. There’s a gap in my medical records for two years as I was healthy enough that I wasn’t seeing the doctor constantly. I even joined the volleyball team in middle school despite morning practices.

Then in October 1986 the first floor of our house flooded with five feet of water. My migraines started shortly after. It took nearly two years to get them under control with the help of a chiropractor who diagnosed me with inverted curvature of my neck. It’s a common whiplash injury but I’d never had whiplash. Spinal molding techniques and many chiropractic appointments eased my migraines and currently I average 2-3 a year. A visit to a chiropractor to pop my neck back into place eases them almost immediately.

In high school, I was diagnosed with chronic sinus issues that cleared up when I wasn’t in school. The school’s swimming pool exhaust fan was right next to the school’s fresh air intake vent. The chemicals from the pool circulated throughout the school. Poorly designed HVAC systems are a major source of biotoxins. On top of that, the school had a flat roof that was prone to leaking. It wasn’t unusual to see garbage cans in the first floor and second floor hallways during the winter, catching water that leaked through the roof and through the floor above. The presence of that much water means mold was growing unseen within the floors and walls. My doctors had no idea what to do about my inflamed sinuses so I was put on antibiotics for approximately 20 days a month, 9 months a year, for 4 years. Now many doctors recognize allergic sinusitis but in the late ’80’s- early ’90’s I was diagnosed with sinus infections, again often accompanied by respiratory issues, and given antibiotics.

I left the cool, dampness of the Alaskan coast for the desert of eastern Washington for college. We hoped the dry heat would be better for my health. It wasn’t. My dormitory was an older building that had the bathrooms/showers renovated over the summer. Soon after moving in my knees started hurting, swelling, and were hot to touch. Weather changes made it worse and I became a reliable barometer. The pain continued to get worse but an appointment with an orthopedic surgeon didn’t show any damage. By the end of the school year, I was on Tylenol 3 with codeine to control the pain and spent many days lying in bed in haze of pain and drugs. My health improved when I went home for the summer.

I moved into a different dormitory the next year and, while the knee pain wasn’t as severe that semester, I started getting sinus problems again. Appointments with ENT’s, multiple sinus x-rays, multiple courses of antibiotics, and even Prednisone barely helped. I went home for Winter Break and my health improved again. As soon as I returned to school, the sinus issues returned. It was another case of Sick Building Syndrome like I experienced in high school. I never learned what I was reacting to in that building but it was probably another poorly designed HVAC system. I moved back into the building I lived in my freshman year. That was a mistake.

Almost immediately the pain that started in my knees started spreading to other joints. At my worst, I couldn’t type because my hands/fingers hurt so much and I couldn’t chew solid food because of the pain in my jaws. I could barely walk and was living on strong NSAIDs and Percocet. A visit to a rheumatologist halfway across the state got me close to a diagnosis but her own health issues meant I never saw her again. I finished out my sophomore year with the understanding that if we couldn’t get my health under control, I wouldn’t be returning in the fall for my junior year.

Soon after my 21st birthday, I saw an Internal Medicine MD in Anchorage who took a look at my medical records, poked me in a few places, and proclaimed he knew what was wrong with me. I had Fibromyalgia. He explained that it was chronic pain condition caused by a sleep disorder. For some reason my body wasn’t getting stage 4 sleep on its own but with proper medication, lifestyle changes, and regular exercise I could control my symptoms. It took several months of trying medications before I found one that helped (cyclobenzaprine). The drug combined with a sleep schedule and walking almost daily pushed the pain and fatigue down to manageable levels. I finished out my college career in fairly good health and in off campus housing.