Category Archives: Treatment

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

Eating Plans to Improve Health

Changing ones diet is the simplest thing one can do to make a huge impact on their health but many people resist making changes to the way they eat. I’ve tried many different diets in order to improve my health. Some helped, some made things worse, some I didn’t see any results either way. I’ve listed them below with a brief description and how I did on them. What most of them have in common is a focus on unprocessed or minimally processed foods.

Yeast Elimination Diet: There are several different yeast elimination diets online or in books. This diet is used to kill overgrowth of candida yeast. Candida overgrowth can manifest as a skin rash, chronic vaginal yeast inflections, gastrointestinal issues, and/or increased fatigue. The diet involves eliminating all foods that feed the candida microbes in the gut. This includes: sugar, yeasts, carbohydrates, fermented foods, & vinegars. Once yeast overgrowth symptoms are gone for several weeks, foods can slowly be reintroduced. Supplements to help kill the yeast and mitigate the effects of yeast die-off can be taken but I’ve done the diet many times without supplements.

I first tried it in 1997 when a brown rash developed on my neck under my hair and kept spreading. My medical doctors told me since it didn’t itch it was just cosmetic and there was nothing they could do about it. My chiropractor suspected it was yeast so I read up on candida and ways to get rid of it. I came across a 4 step yeast elimination diet and tried it. It worked and since then I’ve had to go back to it multiple times, including for a few months this year. For me, a decrease in beneficial gut microbes from years on antibiotics and Prednisone allowed the candida microbes to grow unchecked in my gut.

Anti Inflammatory Diet: There are multiple types of anti inflammatory diets but most recommend eliminating inflammatory foods like sugar, nightshade vegetables (tomatoes, potatoes, peppers, eggplant), trans fat and omega 6 fatty acids, alcohol, dairy, MSG, and gluten. They recommend adding whole grains, leafy greens, nuts, ginger & turmeric, olive oil, garlic & onions, bright colored fruits & veggies, and omega 3 fatty acids from foods like salmon, tuna, mackerel, sardines, chia seeds, & flax seeds, all of which have anti inflammatory properties.

After I got sick in 2008 many of these items increased my inflammation so I eliminated them out of necessity. Some I still have reactions to but others I don’t. After a year of eliminating all inflammatory foods, I added those I don’t have a sensitivity to back into my diet. I’ve had to be vigilant, though, since I got inflammation reactions from foods that are supposed to be anti inflammatory like leafy greens, and ginger & turmeric have a tendency to cause a rash if I over saturate my system with them.

Neurotoxin Diet: This diet was recommended to a friend by an Integrative Medicine doctor and she suggested I try it. It’s currently not well known. I believe the doctor is working on a book about it. The diet eliminates foods with high levels of heavy metals like arsenic in factory farmed chicken & rice, cyanide in tapioca, nuts, seeds, legumes, spinach, and mercury in certain varieties of fish. It also eliminates latex fruit (avocados, bananas, & mangoes) that have been artificially ripened with calcium carbide, artificial sweeteners, and MSG.

I tried this diet for about six months in 2011 but didn’t notice any changes in my health so I eventually reintroduced most of the foods back into my diet. I still don’t notice any harmful effects from these items other than soy, rice, and artificial sweeteners but those are for other reasons (soy changes my menstrual cycle due to hormone increases and rice & artificial sweeteners cause inflammation from the release of cytokines due to my MSH deficiency).

Medical Weight Loss Plan: The clinic I went to emphasized low calories, low fat, low carbohydrates, and high protein along with handfuls of supplements to make up for the nutrients not being obtained by food. It pushed a lot of things I don’t consider acceptable food items (highly processed whey or soy protein bars, protein powders, and snacks with artificial sweeteners). I focused on vegetables and meat.

I did this for about 3 months in 2011 after my weight loss plateaued. With Intracrainal Hypertension, weight loss was strongly recommended as a way to keep the cerebrospinal fluid drains in the neck open and avoid brain surgery. Nothing motives a person to lose weight like the threat of brain surgery. I lost about 15 pounds on the program and it kicked my metabolism back into weight loss mode even though I was miserable on the diet and my health continued to decline. I’m glad I did it but I know so much more about healthful eating and weight loss now than I did then. Between 2010-2011 I lost 60lbs. I regained 30lbs between 2012-2014 due to improving my malabsorption issues and increasing thyroid meds but the weight loss did help. Not only did the extra fluid in my skull start draining properly, reducing the pressure on my optic nerves, it also completely resolved my obstructive sleep apnea.

Specific Carbohydrate Diet(TM): This diet is supposed to improve gut health and has been around in one form or another since the 1950’s. It eliminates grains, starches, and sugars as well as processed foods. The theory behind it is that some people can’t digest complex carbohydrates so only monosaccharide carbohydrates are allowed.

Of all the diets I’ve tried, I had the hardest time with this one. While I understood the rules from a scientific standpoint, it was hard to remember exactly which carbohydrates were allowed. I only lasted two months on it. In that time I didn’t notice any improvements.

Modified Paleo/The Wahls Protocol(TM): This diet was created by an MD who healed her MS through a modified Paleo diet and Functional Medicine. The diet stresses eating 9 cups of non-starchy fruits and veggies per day: 3 cups of colored fruits & veggies (berries, beets, carrots, etc.), 3 cups of leafy greens, and 3 cups of sulfur veggies (cabbage, broccoli, cauliflower, garlic, onions). It focuses on organic, whole foods without additives like artificial sweeteners, pesticides, herbicides, and antibiotics. It eliminates all cereal grains, legumes, potatoes, refined sugar, refined vegetable oils, and limits dairy.

Dr. Wahls’ website was recommended on my first visit with my Integrative Medicine MD in 2012. I tried the diet for just over a month and ended it because I became sensitive to leafy greens & peppers and gained 20lbs. I think it’s a great diet for those with an autoimmune disease and a functioning gut but not so great for people like me who has MTHFR gene mutations affecting the processing of nutrients and other nutrient deficiencies that create food sensitivities. Her book “Minding My Mitochondria” was very informative and interesting, though. It lists the nutrients needed for optimal mitochondrial and cell function in the foods she recommends.

CORE Diet: This diet was recommended by a nutritionist in 2012. It’s both marketed as a weight loss diet as well as a way to eat well-balanced meals. It consists of food lists with average calorie counts per serving size for those who want to count calories as well as a Daily Plate chart that recommends each meal consist of 20% lean protein, 30% healthful fats like olive oil, coconut oil, avocados, and nuts/seeds, and 50% carbohydrates with an emphasis on vegetables and whole grains. It emphasizes quality (low sugar, low gluten, high fiber, organic), quantity (small frequent meals, portion control, minimum 2 fruits/3 non starchy veggies per day), timing (eat every 3-4 hours, last meal 2-3 hours before bed), and balance (protein and fat with every meal or snack). It can also be easily modified for carbohydrate restriction and vegetarians.

I still have the pages given to me by my nutritionist on the fridge. It’s a very sensible eating plan that can be modified for almost everyone. I never used it as much as I should have.

Rotation Diet: This diet is for people with multiple food sensitivities. It rotates food groups in a 4 day rotation in order to reduce new food sensitivities. Four days works better than 3, which I tried, because it gives the immune system enough time to eliminate antibodies from foods rather than keep building them up. There are no foods eliminated on this diet, only restrictions on what can be eaten on which days.

It took visits to two different nutritionists and food allergy blood testing for me to get a decent rotation diet that worked but it was one of the best things I did. I was on a rotation diet of one form or another for most of 2012-2014. I only recently stopped it as I feel that my nutrition levels are finally up to levels where my body is functioning properly enough that it can eliminate antibodies like it’s supposed to.

Low/No Amylose Diet: Amylose is a natural polymer made up of glucose that is broken down by the enzyme amylase that’s in saliva. Eliminating foods high in amylose and glucose helps burn fat without increasing blood sugar. It’s recommended by Dr. Shoemaker to help his mold patients both lose weight and balance hormones. It helps with leptin resistance, glucose resistance, and pre-diabetes. It’s similar to the Paleo diet and the Atkins diet only it’s less restrictive and much easier to understand than the Specific Carbohydrate Diet. It eliminates cereal grains except waxy corn, simple sugars including dextrins, starchy root vegetables including peanuts, bananas & plantains, and commercially prepared juices. It emphasizes no fasting or skipping meals and 6-8 ounces of protein per day.

I’ve been on the edge of pre-diabetes for years and there’s a family history of it. I did this diet for almost a year and the first six months I was very strict about it. I felt okay on it but didn’t lose weight and my fasting blood glucose levels didn’t decrease. It did, however, increase my Transforming Growth Factor Beta-1 levels.

Low Protein Diet: The absolute minimum protein a woman needs is 46 grams per day. A man needs 56 grams. Most people feel better with more, however, there are exceptions. Notably, people with kidney disease are often put on low protein diets. The only restrictions on this diet is the amount of protein.

My reading up on Transforming Growth Factor Beta-1 lead me to this diet. There’s studies that show low protein diets have positive effects on TGF-B1 levels and, since the medication I’ve taken since April hasn’t helped, I thought it was worth trying. An added benefit to this diet was I didn’t have to eliminate anything other than foods I get a reaction from (though I need to keep an eye on my blood glucose levels). The diet makes sense for me since TGF-B1 has been implicated in kidney disease as well as diabetic neuropathy. The reason diabetics are often put on medications to protect their kidneys is to keep TGF-B1 levels from rising. Those same medications are used to reduce TGF-B1 in kidney disease patients and mold/biotoxin patients.

 Shangri-La Diet: This weight loss diet was the idea of the late psychologist Seth Roberts, PhD. Besides experimenting on himself, he did in depth studies on it as well. The concept is based on the idea that the body stores more calories from familiar tasting foods than from neutral or unfamiliar foods and eating/drinking high caloric flavorless foods can reset the appetite controls in the brain, making it so a person eats less. There are no food restrictions on this diet but it does add 1-2 Tablespoons of flavorless oil or sugar/honey water twice a day. The oil/sugar gives the body the calories it needs to function without storing it as fat. The book recommends a person gets enough nutrients by taking multivitamins or other supplements.

I read the book in October. I started this diet around the same time I started the low protein diet and drastically changed my thyroid meds. So far I’ve lost 11lbs and I haven’t been following it as strictly as I could be (some days I only do 2 tbs of extra light olive oil once a day). I don’t feel deprived of food and I don’t have to count calories. I mostly eat nutrient dense foods for my two meals a day because quality of nutrients matters to me. Breakfast usually consists of a fruit smoothie and lunch/dinner is a roasted veggie blend with a small amount of meat or fish. My weight has fluctuated up and down depending on the dose of my thyroid meds since 2012. This is the longest I’ve maintained any weight loss since 2011 and I’m hopeful I can lose the rest of the extra weight I gained and maintain it thanks to this diet.

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.

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.

 

Is Integrative/Functional Medicine Right For You?

That is a question you have to ask yourself before seeking out a clinic. I went with IM because my health was continuing to decline and I had multiple bad reactions to standard treatments used by conventional doctors. Many dysautonomia patients have blogged about their experiences with IM and how it their improved their quality of life. My previous medical provider also recommended it.

Integrative/Functional medicine uses a holistic method of medicine and many IM clinics have Osteopathic doctors on staff as well as massage therapists, nutritionists, and acupuncturists. They treat the whole body as one interconnected system and use a variety of evidence based methods to improve the quality of life of their patients. It requires a shift in thinking from the treating symptoms model of medicine to finding the underlying causes of illness, which may be genetic, cellular, hormonal, microbial, viral or any combination there of, and personalizing treatment to improve function. It’s not a cure for chronic systemic illnesses but it is a method to gain control over them. It’s also not an easy process – there are no taking pills and you feel better in a few weeks. It requires experimentation with supplements, medications, diet, exercise, and alternative therapies to find the best combination for you. You’re also not a passive participant in your care when it comes to Integrative/Functional Medicine. My MD encourages me to read about my health problems and bring the information to her. She believes that a good patient is a well-informed patient. No one is more invested in improving your health than yourself.

I’ve been criticized for advocating Integrative/Functional Medicine and sharing my journey with the world. Make no mistake, this is my journey and my experiences with Integrative/Functional Medicine and I am seeing improvement using their methods. My health still has lots of ups and downs but overall I am improving. I won’t stop advocating or writing about my experiences because if it helps one person improve their own symptoms that’s more than my detractors can say about their negativity. Hope is never a bad thing whereas negativity is toxic.