Category Archives: Mitochondrial Dysautonomia

Personal Health Update

I haven’t written about my health in quite a while because there wasn’t anything positive to share. At the end of 2014 I was feeling fairly good and started taking prerequisite science classes so I could pursue a degree in Human Nutrition. Then my health took a turn for the worse with chronic urinary tract infections that lead to a bladder ulcer. The long term antibiotics to heal the ulcer caused systemic yeast infections and SIBO (small intestine bacterial overgrowth), which significantly impacted my health and increased my fatigue. While my gut health still isn’t where it was prior to the antibiotics, I made a few changes this spring that has improved my fatigue and a few other symptoms plus allowed me to reduce doses on some medications and supplements.

I added a low dose (1000mg) of D-ribose twice a day and saw almost immediate improvements in my fatigue. D-ribose is a sugar molecule required for the production of RNA, DNA, NADH, and ATP. ATP is the major energy currency of cells and is required for proper metabolism. High doses of D-ribose (5g 2-3x a day) has been studied in patients with congestive heart failure and ME/CFS as well as in athletes for recovery from physical activity with fair results, but personal anecdotes from patients with fatigue suggested smaller doses were more effective. Due to inflammation reactions and occasionally asthma attacks from sucrose sugar, starting at a lower dose made the most sense for me. I started at 500mg once a day and over a few weeks increased to 1000mg twice a day (morning and afternoon). I tried 1500mg twice a day and 1000mg three times a day, but saw increases in my inflammation and worsening sleep quality that I didn’t get at 1000mg twice a day. Within weeks my fatigue had improved to the point where I could reduce my CoQ10/Ubiquinol dose from 400mg twice a day to 200mg twice a day and reduce my acetyl l-carnitine from 1000mg twice a day to 500mg twice a day. Within a month I also was able to eliminate Cytomel T-3 only thyroid medication completely and my thyroid hormone levels are stable on levothyroxine alone. Apparently a deficiency in ATP depresses the utilization of iodine required for thyroid hormone production so increasing my ATP production with D-ribose also improved my hypothyroidism. This explains why my hypothyroidism got so much worse when my fatigue became severe and why I had such a hard time balancing my thyroid meds since then.

I added rhodiola rosea twice a day to my treatment plan about a month before I started taking D-ribose. It’s an adaptogen that helps with oxidative stress and fatigue from psychological and physiological stressors. It seems to have helped me with heat stress this summer, though I also increased my salt intake by 1/2 a teaspoon per day added to my water, lemonade, or herbal tea. Increased salt intake has improved my tachycardia by more than 10bpm and reduced the incidents of dehydration I used to get from swimming outdoors in the summer heat.

Another big change in my routine is my eating plan. While I still follow a low carb diet, I began experimenting with intermittent fasting. First I tried 4:3 fasting, which is eating for four days a week and restricting food to no more than 500 calories three days a week. I lost 12lbs in the month I did 4:3 fasting, but it wasn’t very sustainable. I then switched to 18 hour overnight fasts with lunch as my main meal. I fast from about 7pm to 1pm the next day. I’ve lost 8lbs since I’ve been doing it and I plan to continue it. My fasting blood glucose has improved more with intermittent fasting than it did on a low carb diet alone and avoiding type 2 diabetes is a bigger long term goal for me than weight loss. Research suggests that intermittent fasting along with a low carbohydrate diet also improves mitochondrial function.

Below is my current medication/supplement treatment regime:

Myalgia/Sleep Disorders

  • Cyclobenzaprine (generic Flexeril) – 10mg/day at 7pm
  • Naltrexone, Low Dose (LDN) – 3mg/day at 11pm
  • Magnesium Oxide – 1000mg/day; 500mg at 3pm and 11pm
  • Melatonin – 250mcg/day at 11pm
  • Potassium Glutamate – 99mg as needed for leg cramps

Mitochondrial Dysautonomia & Nutrient Deficiencies

  • Acetyl L-Carnitine – 500mg 2x/day at 9am and 3pm
  • Alpha Lipoic Acid – 300mg/day; 150mg at 9am and 3pm
  • Calcium Citrate – 400mg/day at 3pm
  • CoQ10/Ubiquinol – 200mg 2x/day at 9am and 3pm
  • Coenzymated B Complex – 2x/day at 9am and 3pm
  • D-ribose – 1000mg 2x/day at 9am and 3pm
  • Probiotics – 2 tab/day at 9am and 3pm
  • Rhodiola Rosea – 100mg 2x/day at 9am and 3pm
  • Thiamine (coenzymated) – 25mg 2x/day at 7am and 11pm
  • Vitamin D3 – 2000UI/day at 3pm
  • Vitamin K2 (MK-7) – 100mg/day at 3pm

Hypothyroidism

  • Synthroid (levothyroxine) – 75mcg/day at 7am

Other Genetic Mutations (COMT)

  • L-theanine – 100mg 2x/day at 9am and 3pm

Mold/Biotoxin Illness & High Clotting Factor VII

  • Losartan – 25mg/day at 7pm
  • Aged Garlic Extract (Kyolic 100) – 600mg before meals
  • Vitamin C – 150mg/day at 7pm
  • Zinc – 15mg/day at 11pm

Allergies

  • Allertec (generic Zyrtec) – 25mg/day at 11pm
  • Guaifenesin (generic Mucinex) – 400mg 2x/day at 9am and 11pm
  • Immunotherapy vaccines (allergy shots) – every 4 weeks

Liver Issues

  • Milk Thistle – 175mg 2x/day at 9am and 11pm

Perimenopause

  • Chaste tree Vitex – 225mg/day at 11pm

My Food Sensitivity History

I’ve had a complicated relationship with food since I was an infant that only increased as I got older. I now know that much of my food sensitivities were caused by my compounded heterozygous MTHFR gene mutations. Decreased ability to process folate and B12 from foods affects methylation and detoxification. This results in increased sensitivity to foods, drugs, and environmental stimuli. MTHFR gene mutations are often the root cause of Multiple Chemical Sensitivity.

My first major food sensitivity noticed by my mom was to cow’s milk. It would cause sinus drainage and excess phlegm. Cheese didn’t cause such a dramatic reaction but milk did. Unlike most children I didn’t grow up on cold cereal and glasses of milk. It improved as I got older, most likely because I had allergy shots from age 10 to age 22, but worsened in 2008. My 5 year anniversary gift from my job was an ice cream/sorbet maker. I spent months making and eating ice cream, most of it milk based. I started getting pain in my right side that worsened. Gallbladder issues were suspected but none of the tests showed gallbladder problems. In 2009 I finally connected the pain to dairy consumption and eliminated it from my diet. This July I reached the one year mark on the current round of allergy shots and my allergist assured me that the sinus issues from dairy should be resolved.  I started adding dairy back into my diet, mostly in the form of cheese, and it’s going okay. My sinuses do better with cooked dairy and I have to limit the amount I eat or the pain in my side returns but it’s not something I have to watch strictly. I still use coconut or almond milk as a milk substitute in most recipes and I doubt I’ll ever return to using milk or cream. Cheese, though, is much harder to substitute.

The second food I reacted to as a child was chocolate. At age 7 or 8, I ate too much and broke out in hives. I had to be very careful about the amount of chocolate I had until after the eight month course of Prednisone I was on in 2010-2011. Since then I haven’t had a problem with chocolate. At least one good thing came out of that drug experience.

My last childhood food sensitivity was to sugar. When I was around 10 we made doughnuts and I was dipping them in a confectioner’s sugar glaze, often licking my fingers. Before too long I had an asthma attack. Sensitivity to sugar is pretty common in my family. My dad gets stomach aches if he eats too much and my sister gets a horrible barking cough that kept her out of elementary school for a month. My tolerance level to sugar was fairly high and lemon juice was a good counteracting agent if I ate too much. Then in 2010 my hands would swell if I had sugar and I’d experience increased pain and  inflammation in joints I’ve damaged. I eliminated it from my diet. I tried to add it back in last year but the pain in my SI joints/hips increased and I felt like I was in a mini myalgia flare. Eliminating sugar again decreased the pain.

I didn’t have any major issues with other foods until after college. My first job after college was working at the salad bar of a grocery store. We were encouraged to sample the fruits we cut up to test for ripeness. By the end of the nine months I worked there I couldn’t eat any fruits or berries except lemons and bananas without my eyes swelling and itching, and breaking out in a rash. For awhile I couldn’t even touch acidic foods like pineapples or hot peppers. This lasted from 1996 to 2009. It took a couple more years before I was able to eat tomatoes again.

It’s still kind of a mystery why I reacted to the next foods. Starting in 2000 every time I ate pork I had terrible gastrointestinal issues. Bacon was the exception. Then in 2003 I had the same reaction to beef, elk, deer, wild boar, and buffalo. Originally we thought it was due to hormones but I reacted to wild game and organic meats, too. This reaction continued until 2010. With mitochondrial dysfunction there are sometimes issues with protein metabolism. Another possibility is my liver dysfunction decreased protein metabolism. Currently I’m okay with most forms of protein except canned legumes. Fresh, frozen, and dried are fine just not canned. The only thing I can think is that canning changes the protein structure of them in some way that my body can’t handle.

In 2010 after the worst of my myalgia flare was under control, I noticed inflammation reactions to more foods. I suspect the mold illness and dysregulation of inflammatory cytokines have a lot to do with it. Wheat/gluten and potatoes besides sugar made my hands swell so I eliminated them. Soy changed my menstrual cycles so I eliminated it. In 2012 before I started the supplement regime that helped my methylation errors, I tried Dr. Terry Wahls’ modified Paleo diet for autoimmune diseases. I saturated my system with too many leafy greens and peppers and got the same pain in my right side from them that I got from dairy. I eliminated them. This year I was slowly adding grains back into my diet after being on a grain free diet and noticed that I got an inflammation reaction from rice. It is now out of my diet. One the plus side, I was able to add potatoes, leafy greens, and peppers in moderation back in last year and my tolerance to sugar is a little higher than it was.

Looking back at all the foods I had to eliminate due to adverse reactions it’s not surprising I had nutrient deficiencies. Vitamins are obtained from food sources since the body can’t create them itself. I eliminated major sources of vitamin C and antioxidants (fruits & berries), B1 (pork & whole grains), B12 (red meat & dairy), and folate/folic acid (leafy greens & enriched wheat products). Even if I didn’t have MTHFR gene mutations, decreased microbes in my gut due to Prednisone and antibiotic use, and MSH deficiency from mold illness, I probably would have had nutrient deficiency issues, just not quite so severe as to cause Mitochondrial Dysautonomia.

Overall my food sensitivities have improved a great deal and there’s hope that once I’m completely healed from mold/biotoxin illness the rest of them will improve as well. In a later post I’ll discuss in more detail the various diets I’ve tried to improve my health, including rotation diets meant to avoid any further food sensitivities.

Current Treatment Regime

It’s taken years to get a solid treatment regime in place that addresses all my health issues and is building my health up instead of tearing it down. Besides the drugs and supplements listed below, I get allergy shots every 4 weeks, I see an Osteopathic Doctor every month for Osteopathic Manipulation Treatment (OMT) to improve the muscles in my upper chest and upper back that atrophied when I was bed/couch bound for most of 2011-2012, I see a Chiropractor as needed for lower back and neck adjustments, and I see a massage therapist as needed to work out knots in my muscles that don’t work themselves out. I’m also constantly adjusting my diet and exercise routine to fit my ever changing needs. I’ll discuss other treatments I’ve tried and discontinued in other posts. Early next year I plan to have some of the in depth nutrient and metabolic tests redone so we’ll have hard proof of improvement and see if I can lower the dosage of some of the supplements I started in 2012.

Myalgia/Sleep Disorders

  • Flexeril (cyclobenzaprine) – 10mg/day I’ve taken this muscle relaxer at night to improve my sleep quality since 1993 with only a 6 month break in 2009. I’ve taken as much as 20mg/night and as little as 5mg. For years I was on 15mg dose. I’ve also played with the timing of the dosage a lot. If I take it too late at night I wake up with a drug hangover and if I take it too early then I don’t fall asleep during its optimal effectiveness time. Currently I take it at 7pm.
  • Naltrexone, Low Dose (LDN) – 3mg/day I take this compounded drug before bed to improve my sleep quality and immune system. It helps the body produce the chemicals needed to heal itself that are usually produced during stage 4 sleep. I took it for 6 months in 2009 and didn’t see any improvement with it. I started it again in 2012 and have had great success with it. I wake up before my 8:30am alarm feeling alert and awake 98% of the time and with much fewer muscle aches and stiffness. For someone who used to spend weekends sleeping until noon and avoided morning shift work for years this is amazing.
  • Magnesium – 1000mg/day (500mg 2x a day) This helps prevent lactic acid build up in muscles which causes muscle aches & cramps. It also helps relax muscles and decreases anxiety. I do best on Magnesium Citrate but Chelated Magnesium is better absorbed by most people and has fewer side-effects.
  • Melatonin – 500mcg/day This helps sleep patterns, particularly circadian rhythms. It helps me fall asleep and stay on a regular sleep schedule. Since starting it in 2009 I’ve been able to decrease it from 3mg a night down to 1/2mg. If I take too much then I wake up feeling like I’ve been drugged.
  • Potassium Glutamate – 99mg as needed. I learned, after years of extreme muscle cramps before my period, that a woman’s body tends to demineralize at that time of month, severely decreasing levels of magnesium and potassium. Adding potassium at the first twinge of muscle cramping has kept them mild for the past 18 months and the huge knots in my leg muscles that occurred each month have disappeared. I took it twice daily for a year when I was on a grain free, modified Paleo diet since I wasn’t eating bananas or potatoes but dropped it back to as needed once I started eating potassium rich foods again.

Mitochondrial Dysautonomia & Nutrient Deficiencies

  • Alpha Lipoic Acid – 600mg/day A powerful antioxidant that helps prevent and reverse oxidative stress. It helps stabilize blood sugar and helps decrease neuropathy. It is an essential fatty acid that helps brain function and is a necessary substance in the metabolism of L-Carnitine. My levels were critically low when checked in 2012.
  • Calcium Citrate – 400mg/day Helps with bone, hair and nail health. Important for me because I don’t get calcium from very many foods due to malabsorption. My fingernails have never been this healthy. They no longer break, bend, or peel.
  • CoQ10/Ubiquinol – 400mg 2x/day A co-enzyme essential in the production of energy by the mitochondria. It improves heart function, assists in recovery from exercise, and is an antioxidant. My blood levels were in the low-normal but, because it’s needed by every cell in the body, blood levels can’t accurately show if supplementation is needed. I’ve seen a huge difference in my energy levels since taking it and I recover from activities much faster. Switching to the more bioavailable Ubiquinol means that I need less to get the same results.
  • Coenzymated B Complex – 2x/day It took me awhile to build up my B vitamin levels from where they were in early 2012 to a place where I could take a B complex without it making me more ill. Coenzymated means the vitamins are in their bioavailable form so they can be absorbed by the body without further breakdown in the gut. I still take a few B vitamins in addition to the B complex because I need them in greater quantities than what are in the B complex. I look for a complex that has lower amounts of B6 and Niacin (B3) and greater amounts of Thiamine (B1) and Riboflavin (B2) based on my 2012 deficiencies.
  • 5-MTHF Folate (B9) – 400mcg/day B vitamins are necessary for the production of red blood cells and a healthy nervous system.  I take bioavailable forms of Folate and B12 because my MTHFR gene mutations affects my ability to turn the vitamins into forms that my cells are able to utilize. My first neurologist told me to take folic acid but, since my body couldn’t turn it into a bioavailable form, my blood levels were too high and cellular levels were too low.
  • Methylcobalamin (Methyl B12) – 2000mcg/day B12 is needed for the normal functioning of the brain and nervous system, and for the creation of blood. It is involved in the metabolism of every cell in the body, esp. DNA synthesis and regulation, and also fatty acids and energy production. Methyl B12 is a bioavailable form necessary for those with MTHFR gene mutations since the body has decreased ability to turn inactive B12 vitamins or food sources into a bioavailable form. I use a sublingual (under the tongue) form so it bypasses the gut and gets directly into the blood stream.
  • Adenosylcobalamin (Adeno B12) – 10mg/day Another bioavailable form of B12. Adding Adeno B12 allowed me to wean myself the drugs used to mute neuropathy pain in the brain. I also take this as a sublingual tablet.
  • Iron – 5mg/day Iron supplementation helped decrease my muscle twitching & trembling. My previous PCP recommended it instead of putting me on medication for RLS. She said at least 85% of her RLS patients see improvement on iron alone. I restarted it when the trembling and weakness returned due to borderline anemia from the drug Losartan. I take a liquid supplement added to water for better absorption and fewer side-effects.
  • Acetyl L-Carnitine – 1500mg 2x/day  This is an essential amino acid necessary in the conversion of fatty acids to energy by the mitochondria. It can interfere with thyroid replacement meds but has been shown to protect the heart from damage, increase energy and help with memory retention in Alzheimer’s patients. Acetyl L-carnitine passes through the blood-brain barrier and increases energy production in brain cells. After three weeks on it my Spasmodic Dysphonia stutter disappeared and my constant brain fog vanished. When I first started taking it I’d experience an energy crash in the afternoon if I missed taking it or waited too long to take it. That’s no longer the case though I still consider it necessary for me to function.
  • N-Acetyl Cysteine (NAC) – 600mg/day This is an amino acid which converts to Glutathione, another powerful antioxidant. It also helps with oxidative stress as well as respiratory disorders and drug toxicity. It’s often given short term to protect organs before medical tests requiring contrast dye. My levels were critically low but I couldn’t tolerate Glutathione supplements so I switched to NAC. I’m currently taking a sustained release variety.
  • Omega 3 Fish Oil with DHA – 1000mg/day More essential fatty acids needed for healthy heart, good cholesterol and reducing inflammation throughout the body. I used to take 3000mg/day but decreased it when I added more flax seed and chia seed to my diet.
  • Probiotics – 2 tab/day This is the good bacteria that lives in the gut and is essential for the absorption of nutrients and a healthy immune system. My tests showed I had very little bacteria, good or bad, likely caused by years of antibiotic use and Prednisone. Hopefully once I build a healthy colony of good bacteria then most of my malabsorption issues will be resolved.
  • PQQ (Pyrroloquinoline quinone) – 10mg/day A redox cofactor important for metabolism. It’s been shown to assist in mitochondrial biogenesis and is thought to help those with mitochondrial dysfunction. Studies have been mostly on mice rather than humans but my MD let me try it once I found a brand she trusted. Combined with CoQ10, it has greatly increased my recovery time from activities. I tried going without it and within a week saw a marked increase in my fatigue.
  • Vitamin D3 – 4000UI/day This is a powerful antioxidant that helps with emotional stability, bone density and wound healing plus it boosts the immune system. I’ve been taking it for years and every time I lower the dose to 2000IU my levels drop too low. My genetic tests showed a mutation in the VDR gene that effects metabolism of vitamin D which may account for my greater need for it.

Hypothyroidism

  • Synthroid (levothyroxine) – 50mcg/day This is the T4 thyroid hormone only drug that most doctor’s prescribe for hypothyroidism. I took it for years without too much trouble but since nearly doubling my dose at the end of 2011, I’ve had nothing but problems keeping it balanced. Too little and the fatigue and weight gain would drag me down, too much and the heart palpitations and trembling would get out of control.
  • Cytomel (liothyronine) – 6.25mcg 2x/day I recently added this T3 only drug to my regime by replacing 50mcg of Synthroid with 12.5mcg of Cytomel. So far it seems to be working really well. I have more energy and fewer hypothyroid symptoms. Blood tests are next week so we’ll see if they match up with how I’m feeling.

Other Genetic Mutations

  • L-theanine – 100mg 2x/day I have two COMT gene variants that affects dopamine, epinephrine, norepinephrine, and estrogen reuptake. If these genes are expressed then mood swings, anxiety, insomnia, inability to deal with stress, and other mental dysfunctions can occur. Treatment with L-theanine, an amino acid found in certain mushrooms and green tea, can silence the genes. Since starting L-theanine 2x a day, my mood has never been so stable. I feel mentally healthy for the first time in my life.

Mold/Biotoxin Illness (temporary meds)

  • Losartan – 25mg/day This blood pressure medicine has many other uses. I’m taking it to lower Transforming Growth Factor Beta-1 but it’s also used to protect the kidneys from diabetes and to make chemotherapy drugs more effective.
  • Propolis – 500mg/day Propolis is a resin collected by bees from tree sap, tree buds, and other botanicals. Bees use it to fill holes in the hive that are too small to fill with wax to reinforce the structure, reduce vibration, and protect against bacteria, fungus, and parasites. It’s been used medicinally for thousands of years and recent medical research shows it has antibacterial and antimicrobial properties and is especially useful to treat mouth sores. Dr. Dietrich Klinghardt, a Functional/Integrative Medicine MD who specializes in Lyme Disease, recommends it to increase MSH levels so I’m trying it. We’ll see if it works after my next inflammation biomarker test results come in.

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 3)

After losing my voice to a severe and painful stutter I was tested for a stroke. When the tests came back negative my neurologist put me on high doses of Klonopin to “reset my brain.” It helped with some of the anxiety of being diagnosed with a serious and disabling illness but it didn’t help the stutter and it made my brain work much slower.

I worked closely with my PCP on treatments for the Intracranial Hypertension and the accompanying headaches, often seeing her once a week. My headaches improved through the course of the year but didn’t go away completely. I felt well enough to work at several points but the stutter was persistent and didn’t respond to treatment and the headaches always returned. Being unable to communicate clearly was a big disadvantage in this information and telephonic age. Attempting to talk on the phone was enough to make me cry from pain and frustration. I took to writing notes to my doctors so I could communicate with them easier.

I finally saw a speech specialist and was diagnosed with atypical Spasmodic Dysphonia. The standard treatment for it was Botox injections in the vocal cords. I did three courses of it but the improvement wasn’t enough to make it worth continuing. After the injections I could speak in a strangled, rough voice for a few weeks that still hurt. One friend said I sounded like “a sexy Marge Simpson.” I was warned not to whisper as it would damage my vocal cords beyond repair but I ended up communicating that way because it was easier and more clear than stuttering.

I had an opportunity to move into a friend’s daylight basement and I jumped at the chance to get out of my moldy apartment building. The basement smelled odd but I only found a few spots of mold in the window sills and in the bathroom. I kept the heat on and placed air purifiers throughout the space. A few weeks before moving at the end of November I started Predinsone to reduce the inflammation on my brain and help the persistent headaches. My PCP commented that it was obvious I had systemic inflammation but it didn’t appear on standard blood tests. I felt surprisingly well before and immediately after the move; I weaned myself off Klonopin and I was gaining strength. Then in January 2011 the muscle spasms began.

Things escalated quickly from that point. Within weeks the muscle spasms turned into muscle cramps. I started trembling, got pins and needle pain in my feet, had presyncope episodes where I’d nearly black out upon standing, and my fatigue returned worse than before.

My neurologist ordered blood work to check for vitamin deficiencies and autoimmune diseases. When they were negative, she ordered MRIs of my brain and lumbar spine to look for lesions that would indicate MS and did an EMG in my right arm, hand, and leg to check for large nerve impingements. She found osteoarthritis in my lower lumbar region but nothing else. By this time the pins and needles pain increased and spread. Besides my feet, it attacked my thighs, buttocks, lower back, hands, and forearms. At various times it felt like I was being attacked by fire ants, clawed by tigers, zapped by electric eels, and stung by jellyfish. I had other weird sensations that felt like cats purring and frogs jumping under my skin. There were days I couldn’t wear clothing or have anything touch my skin. I spent most of my time lying on my left hip, the one place I could stand to put pressure on. I slowly weaned myself off Prednisone against my PCP’s advice because I had a feeling it had something to do with my new and rapidly progressing health problems.

I ended up in my PCP’s office in tears when the electric shocks started in my crotch area. She put me on Amitriptyline, an antidepressant often used to block nerve pain signals to the brain. I placed a desperate call to my neurologist’s office and saw her about it as well. She offered to refer me to a rheumatologist for the osteoarthritis but wouldn’t do anything about the neuropathy since the tests she ran all came back as normal. She told me it was probably Fibromyalgia and I should learn to live with it. I’d lived with Fibromyalgia for more than 20 years; it wasn’t Fibromyalgia.

My PCP was more sympathetic. She referred me to a nerve pain specialist at the teaching hospital in Portland. In July 2011 I spent the better part of a day in testing: more blood tests, another EMG, skin biopsies, and autonomic testing. I left like I was getting close to some answers. After the testing I switched from Amitriptyline to Nortriptyline. It eased the pain better and didn’t have the severe fatiguing side-effects I had with Amitriptyline.

Since I was becoming more and more disabled and my parents took me to all my out of town doctor’s appointments, I decided to move closer to them when they offered to buy a house for me. They were 80 miles away from me and out of town trips usually ended up being all day or over night trips. In September 2011 I moved inland. A few days later I got the test results from the nerve pain specialists. For the first time since my Spasmodic Dysphonia diagnosis I had abnormal results. I was diagnosed with Autonomic Nervous System Dysfunction (Dysautonomia), Small Fiber Neuropathy, and Carpal Tunnel. The EMG, skin biopsies, and autonomic tests all came back abnormal. The specialist was too far away to be my primary doctor so he released me to the care of my PCP which was fine with me. I just needed him to diagnose me.

Immediately I started reading about Dysautonomia. I needed a new primary care doctor since I’d moved and finding one familiar with SFN and Dysautonomia was important to me. Numerous blogs by other Dysautonomia patients recommended Integrative/Functional Medicine. They had improved quality of life with IM if not complete control of their symptoms. My PCP had also recommended them since I reacted so poorly to standard medical treatments and IM is based more on scientific evidence than the guesswork used in the naturopathy I’d tried in 2009. My first appointment with my Integrative Medicine MD was in January 2012.