Category Archives: Medical History

Intracranial Hypertension and Thyroid

I started graduate school last month with the intention of earning an MS in Human Nutrition. For my Biochemistry of Nutrition class I have to do a research project on a metabolic disease. Originally I planned to do one on mitochondrial disease but from my Pathophysiology class I’ve learned that mitochondrial dysfunction underlies nearly every chronic illness from autoimmune diseases to cardiovascular disease to Parkinson’s disease to Alzheimer’s disease. Now I plan to do it on Secondary Intracranial Hypertension, if my professor agrees. The causes of Idiopathic Intracranial Hypertension are unknown but there have been multiple risk factors found for SIH, including endocrine disruption due to pituitary gland dysfunction, hormone birth control, steroids, hyperthyroidism, and hypothyroidism. Endocrine disruption makes some, not all, SIH a metabolic disease.

I believe quite strongly that facultative hyperthyroidism due to improper/negligent medical care was the cause of my SIH. This post lists all the reasons I believe this. Unfortunately there is no way to prove it since I didn’t have many labs done in the five months I was taking the wrong dosage of thyroid medication (or if I did, I don’t have copies of the results).

In July of 2009 I started seeing a naturopathic “doctor” because none of the multiple treatments I tried with my Internal Medicine PA, even experimental ones like Viagra, helped relieve the “Fibromyalgia” (I usually call it mold induced myalgia now) and I was getting sicker and sicker. It culminated with my PA taking me off all medications and admitting she couldn’t help me. The ND could prescribe a promising medication I had researched, Low Dose Naltrexone, that my PA was unable to prescribe since it came from a compounding pharmacy. Unfortunately I allowed the ND to talk me into trying many more things, most of which made my symptoms worse or caused new problems. Even though my hypothyroidism was very mild and I’d taken a low dose of Synthroid for years without any problems, she thought I needed to take both slow acting T4, like Synthroid, and a fast acting T3 thyroid medication because my body wasn’t converting the T4 to T3 properly. It’s possible this is true since mold illness increases systemic inflammation and interferes with the function of the pituitary gland which signals the thyroid gland to produce more T4 and T3 with Thyroid Stimulating Hormone (TSH). Inflammation can also inhibit the body’s ability to convert T4 into T3. Not everyone with hypothyroidism requires a T4/T3 medication, but there are some health issues that make it a better choice. A full thyroid serum panel that includes TSH, Free T3, Free T4, and Reverse T3 can help a doctor find the best treatments for a patient. Thyroid antibodies can also be tested if an autoimmune disease is suspected.

Instead of switching me to a natural dessicated thyroid medication that comes in standardized doses from a pharmaceutical company like Armour, Naturethroid, or Westhroid, my ND prescribed an 80/20 T4/T3 drug from a compounding pharmacy. Here’s where the negligence comes in. I was taking 37.5mcg of Synthroid and I switched to 40mcg of 80/20 T4/T3 combination in mid-September. This breaks down to 32mcg of T4 and 8mcg of T3. The problem with this dosage is that T3 medications are almost 4x as potent as T4 medications. Most thyroid medication conversion charts equates 12.5mcg of T3 to 50mcg of T4. Using that conversion, I was prescribed the equivalent of 32mcg (8×4) T3 along with another 32mcg of T4 for a total of 64mcg, almost twice the dose I was taking before. If the conversion had been done properly, I should have been prescribed 25mcg of T4 and 5mcg of T3 (5×4=20+20=40). I know math is hard, but it is a doctor’s job to know how to prescribe medications at the right doses. This is doubly so if the drug is compounded and not standardized. This dosage mistake had huge repercussions for my health.

I don’t like to play “what if” games because it would drive me insane. There are too many decisions that were made either by me or my health care providers that contributed to the worsening of my  health, from where I lived to what medications I took, but a dosage mistake is not the same thing as hidden mold or unforeseen medication side-effects. It is negligence and possibly malpractice.

At the end of December 2009, my IH headaches began and continued to worsen. Based on the location of the headaches at the top of my head, I thought they were thyroid related. My mom gets similar headaches when her thyroid meds are out of balance. I asked my ND to test my thyroid levels in early February 2010. She said everything was within normal range but I still wasn’t converting T4 to T3 properly. She convinced me to take the herb chaste tree to help regulate my period, which had been irregular and sometimes occurring twice a month since January. My health continued to decline and the headaches got worse. The problems with my period are also hallmarks of hormone/thyroid imbalance for me. Often that’s my first major sign that something is wrong since fatigue and muscle pain are normal for me.

By early March I knew the compounded thyroid meds were making me more ill, even if I couldn’t prove it; my fatigue and muscle pain were almost unbearable, I had severe sleep issues, I bled constantly, I lost weight very fast (over 10lbs in one month), and the headaches were uncontrollable. I finally saw my PA on March 12th and switched back to Synthroid at my previous dose of 37.5mcg. Of course it was too late by then; I already had IH. March 19th I tried a migraine medication in an attempt to stop the pain cycle. The next day the left side of my face and my left forearm went numb and the headache expanded to encompass my entire head. On March 23rd I started losing vision in my left eye. On March 24th I saw my PA and had an emergency MRI of my head. She talked me into trying an opiate in an attempt to stop the headache cycle. The MRI didn’t show any abnormalities so on March 26th I had an emergency appointment with an eye doctor. My eye pressure was elevated and there was bulging on my optic nerves indicating elevated cerebrospinal fluid in my skull. He diagnosed me with Pseudotumor Cerebri aka Intracranial Hypertension. Later that day it was confirmed with a lumbar puncture with an opening pressure of 35 (normal is under 25). 30cc’s of CSF was removed in an attempt to reduce the pressure in my skull and ease the four weeks of continuous headache.

I won’t go into depth about my experience with IH in this post since I’m building a chain of evidence that the IH and my thyroid problems are linked. It took several years for the IH symptoms to ease up and mostly disappear, but my thyroid problems weren’t over. In late 2011, I once again had issues with irregular periods despite doing okay on 37.5mcg of Synthroid since switching back to it in 2010. My TSH was too high, which meant my body wasn’t getting enough thyroid hormones. My Synthroid dose was increased to 100mcg. My energy levels were greatly improved for about a month and I weighed less than I did at age 16, but then my TSH dropped too low, which meant I was taking too much medication. My dosage was adjusted downward and I gained most of that weight back in the space of two months. In late 2012, I tried Armour thyroid, a natural dessicated thyroid medication that contains both T3 and T4 hormones. I didn’t do well on it and the IH headaches, which were mild at that point, got much worse. They eased up once I was back on Synthroid.

After a year of struggling to get my thyroid levels balanced with Synthroid I asked to try a T3 medication, Cytomel, alone in late 2013. By that time my IH symptoms were basically gone. I’d get an IH headache a few days a month around my period, but that was it. I was no longer on Nortriptyline for neuropathy nor diuretics to remove extra CSF, both of which were used to treat my IH. Within a few days of slowly increasing the dosage of Cytomel, I knew it was a problem. After two weeks the IH headaches were too severe for me to continue on Cytomel. I switched back to Synthroid and soon the IH headaches were gone again. My MD still wanted me to try both T4 and T3 medications since blood tests showed I wasn’t converting T4 to T3 properly. I have copies of that lab work showing it to be true. At that point I was taking between 93.75mcg and 87.5mcg of Synthroid. We dropped Synthroid down to 50mcg and added 5mcg of Cytomel twice a day.  Even though the conversion of this dose was close to what I was taking of Synthroid (10×4=40+50=90mcg), once again the IH headaches returned. I dropped the Cytomel dose down to 5mcg in the morning and 2.5mcg in the evening and the headaches became bearable, though they were a constant presence. I’ve stayed fairly close to that dose since then though I still have to adjust the doses of Sythroid and Cytomel several times a year to find the best dose that keeps the headaches away, yet keeps my energy levels up enough I can function. If one or both of the doses gets too low or too high, not only does the IH headaches worsen, my fatigue gets worse, so do my PMS symptoms, and eventually my periods become irregular. Currently I’m taking 56.25mcg of Synthroid and 5mcg of Cytomel in the morning and 2.5mcg in the evening and I have a constant, yet mild, IH headache. I took 62.5mcg of Synthroid and 5mcg of Cytomel in the morning and 1.25mcg in the evening for several months but my fatigue worsened. Somewhere between 6.25mcg and 7.5mcg of Cytomel is my perfect dose, but I can’t cut the 5mcg tablets that small. I may ask my MD about trying a sustained release compounded form of T3 in 6.75mcg.

In the process of writing this, I realized that I’m having so much trouble adjusting my thyroid medications and keeping it balanced due to pituitary gland problems. I’ll have to ask my MD about this as well. I’m not sure there’s anything we can do to treat it directly, but it is something that mold illness affects and it’s the gland responsible for MSH production, and we know my MSH levels are much too low.

Anyway, all my experiences with Cytomel and how tiny dosage changes make my IH symptoms return made me go back and take a hard look at the compounded thyroid medication I was taking when the symptoms began. I’ve read a lot about hypothyroidism and how the body converts T4 into T3 since 2012, and I have a much better understanding of how my body reacts when my thyroid levels are out of balance. Too bad I didn’t have this knowledge before my health was ruined by IH and the treatments for it. Dealing with mold illness was bad enough without adding thyroid problems and IH on top of it. Without the lab reports or copies of the prescription, I don’t think I can prove any of my suspicions to the state naturopath licensing board, but I wonder how many other prescribing mistakes she’s made. We trust health care practitioners, especially if they call themselves doctors, to know what they’re doing. We literally put our lives in their hands. They should be at least be reasonably competent. If I can figure out dosing conversions after looking at a couple of charts online, a medical professional should have even better resources they can reference.

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.

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.

My experience with the Shoemaker Mold/Biotoxin Protocol

I started the Shoemaker Protocol in November 2013 with 625mg of the cholesterol drug Welchol (colesevelam hydrochloride) 4x a day while we waited for the blood test results to come in. My fatigue got frighteningly worse since it affects absorption of other medications and supplements. I had to change the scheduling to 2 tablets 2x a day and well away from my other medication times. Every month I tested my Visual Contrast Sensitivity on a free website. Visual Contrast Sensitivity (VCS) checks visual acuity with light and dark gray lines on a gray background. Mold/biotoxin illness patients who have active neuroinflammation have problems differentiating the lines from the background. There are quite a few free and paid VCS testing sites out there so find one that you are comfortable with. I asked my eye doctor about VCS testing but currently his clinic doesn’t offer it though the next computer upgrade may include it.

My initial blood test results came back in December. I was pleasantly surprised that I had fewer mold/biotoxin biomarkers than expected which meant that the protocol wouldn’t be quite as complicated as it could be.

  • Human Leukocyte Antigens (HLAs) help the immune system tell the difference between body tissue and foreign substances. Genetic testing of the sixth chromosome (HLA DR) indicates susceptibility to mold/biotoxin illness and how sensitive a person is to the illness. My test result came back with the same two alleles on each gene which means I inherited the same gene sequence from both of my parents. I have DRB1 of 15, DQ of 6, and DRB5 of 51. This gives me high susceptibility to chronic Lyme disease and a lesser susceptibility to molds and other biotoxins. This explains how I was able recover from my other major mold/biotoxin exposures once I was out of those environments until I reached my body’s tipping point and I couldn’t recover without medical intervention.
  • Matrix metallopeptidase 9 (MMP-9) delivers inflammatory elements in blood into subintimal spaces. From there inflammation is delivered to other areas of the body like the brain, lungs, muscles, nerves, and joints. It’s a main biomarker for systemic inflammation. My result was high at 780 ng/ml. Normal range is 85-332 ng/ml.
  • C4a is one of the first and major indicators of mold/biotoxin illness and systemic inflammation from innate immune responses. My test came back very high. Normal range is 0-2830 ng/ml. My result was 11492 ng/ml.
  • My Human Transforming Growth Factor Beta-1 was high. TGF Beta-1 is a protein that has regulatory effects throughout innate immune pathways. It helps control the growth and division of cells, the process by which cells carry out specific functions, cell movement, and the self-destruction of cells. My result was 5820 pg/ml. Normal range is 0-2380 pg/ml.
  • Melanocyte Stimulating Hormone has multiple anti-inflammatory and hormonal regulatory function. MSH deficiency means increased susceptibility to mold illness, ongoing fatigue, pain, hormone abnormalities, mood swings, and much more. My result was very low at less than 8 pg/ml. Normal range is 35-81 pg/ml. Currently there are no drugs on the market to improve MSH levels.
  • There were also a couple of tests in the von Willebrand’s profile where the results were far from normal. Coagulation Factor VIII was 214 H. Normal range is 50-180. And Collagen Binding Assay was >400 H and normal range is 45-198. This means there are errors in my body’s clotting ability. These errors can be inborn/genetic or acquired from illnesses like autoimmune diseases. From my genetic tests I already knew I had high susceptibility to blood clots, especially from medications like hormone birth control, so this was confirmation of that.

It took three months for my VCS testing to come back as normal before I could stop taking Welchol and start the next step. I took 45mg of the diabetes drug Actos (pioglitazone hydrochloride) for two months before my MMP-9 levels dropped down into the normal range. Due to my clotting factor errors I couldn’t take the drug recommended to lower C4a so we skipped that step. In April I started 25mg of the high blood pressure medicine Losartan (Cozaar) to lower my TGF Beta-1. In the intervening months while I was working on the first steps of the protocol my TGF Beta-1 level nearly doubled to 11,020 pg/ml. Losartan increased my fatigue so I had to adjust the time I took it to evening rather than morning and add a liquid iron supplement in order to stave off the anemia symptoms it caused.

I went off Losartan in May while waiting for my test results and felt better than I had in years. There was a huge decrease in my fatigue and, while I still had a bad hour or two each day and the week before and during my menstrual cycle, I could leave the house every day for a few hours and I could work in my garden with rest breaks every 30-45 minutes. I went back on Losartan in June when my test results showed it had only decreased by 3,000 pg/ml. Unfortunately my fatigue increased again and I’ve been on the drug since then because my TGF Beta-1 levels keep jumping up and down.

When my October tests showed my TGF Beta-1 and MSH levels were worse than they were the month prior, I started looking outside the Shoemaker Protocol for other options. A chronic Lyme specialist recommends the supplement Propolis to his patients to increase MSH; I added a 500mg capsule once a day. Several studies show a low protein diet lowers TGF Beta-1 so I moved from the high protein, grain free/Paleo diet I’d been doing since last November to a low protein diet. Studies also show that the high blood pressure drug Vasotec (enalapril maleate) combined with the hyperparathyroid D2 analog Zemplar (paricalcitol) lower TGF Beta-1. I’ll discuss all options with my MD when I see her later this month. Lowering my TGF Beta-1 and increasing my MSH are the last steps in the Shoemaker Protocol and it looks like fixing those two things will return me to full health.

Recent changes have greatly increased my energy levels and stamina. I feel better than I did in May and am up to 12 miles a day on my recumbent stationary bike. It’s hard to know how much of the improvement is from seasonal changes (I always feel best in spring and fall and worse in the summer), dietary changes, drug changes or the addition of Propolis,  but it’s very nice. I’m hoping for continued progress and energy stability; only time will show if I have them.

Mold and Me (part 4)

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

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

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

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

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

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

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

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

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

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

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

 

Mold and Me (part 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.

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.