Tag Archives: MCS

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.