MCAS Archives - Hormones Matter

The Lyme Spiral

Published on November 15, 2023

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Two of the most commonly asked questions I face as someone with Lyme disease is “when were you bitten by a tick?” and “when did you get Lyme?” To be honest, while I have my suspicions, I really have no idea. Many people are surprised to hear that the majority of people with Lyme disease never recall being bitten by a tick. The bullseye type rash that people assume is the hallmark of Lyme symptoms also doesn’t occur in many of us with Lyme, hence why we have no idea when we first contracted the disease.

Early History

I was an active child and a competitive swimmer. By high school, I was swimming at the state and national level. I was in great shape with great health, or so I thought, and had no obvious reason to be experiencing any medical abnormalities. However, over my freshman year in high school, I started experiencing widespread joint pain. Because I was in such good health and swimming and training up to four hours per day, it came as a surprise to my parents, coaches, and doctors when I was experiencing such pain. During this time, I did get tested for Lyme by my pediatrician. While he was fine testing for rheumatoid arthritis and lupus, we had to beg him to test for a Lyme test, even though it was common in our area. It was years later when we learned that traditional doctors typically do not test for or treat Lyme disease.

My test showed that I had one positive band of Lyme. He said that this was not enough for a diagnosis, and I was sent home without any answers. My sophomore year of high school, the joint pain continued and even began to get a bit worse. I went to a rheumatologist at the Children’s Hospital of Philadelphia and was diagnosed with Amplified Musculoskeletal Pain Syndrome, also known as AMPS. Their main treatment plan was exercise, which, with swimming, I was already doing. There wasn’t much else that could be done, but by junior year it seemed like I had grown out of AMPS. Whether it was really AMPS or had it been Lyme disease all along, I have no idea.

College Dorm Flu Masked My Infections – Until My Vocal Cords Went Haywire

My freshman year of college living in a dorm I was sick constantly. I missed several of my college swim meets from contracting the adenovirus, developing severe swimmer’s ear, and coming down with strep throat and bronchitis. Another strange thing I began to notice was that I was having low grade fevers nearly every day. I got tested for the mono virus, as many college students are, at one point or another, but the test came back negative. With the constant infections, along with many headaches and slight fatigue, a blood test showed that I had an underlying Epstein Barr virus from prior contraction. I do think they missed mono, and I can’t help but wonder if Lyme played a role.

During my sophomore year of college, I began the swimming season feeling strong until I developed a nasty virus along with a bad cough within the first few weeks of the semester. Luckily, the virus died down, however the cough never went away. The cough became worse as I swam and I was led to assume I had developed sports-induced asthma. I just couldn’t get in a good full breath. During fall break, I went to an allergy and asthma specialist. When I told her I couldn’t fully breathe in, she pointed out that with asthma, you typically have trouble breathing out. She performed a rhinoscopy, where they stick a camera in your nose down into your throat, and examined my vocal cords on a very fuzzy screen before diagnosing me with vocal cord dysfunction. This was a difficult diagnosis because it was hard to explain to friends and family. It is not commonly known, and somewhat misunderstood. People genuinely had no idea that when I was breathing in, my vocal cords were spasming closed. The only thing I could link this to was the virus I had a month prior.

It took months of my vocal cord dysfunction being taken lightly or just blatantly disbelieved until I went to an otolaryngology specialist in New York City. The specialist performed a rhinoscopy as well, but recorded everything on a crystal clear screen. He was able to visibly show my parents that my vocal cords were, in fact, spasming closed when I breathed in. My parents have since admitted they didn’t fully believe me until that appointment. The recommended treatment was Botox. This meant that I had to go into the city every few months to get Botox injected into my vocal cords. Eventually, the doctor recommended surgery because folds of tissue were leaning into my airway over my vocal cords, a condition known as laryngomalacia, making my vocal cord dysfunction worse. I got surgery and continued with my Botox appointments and my vocal cord dysfunction finally calmed down a bit. Again, here I had suspicions that this was related to Lyme disease as well. My first Lyme specialist commented that vocal cord dysfunction could have been a result of the disease. After hearing Shania Twain’s story about how Lyme disease affected her vocal cords, my suspicions were stronger, but, again, I will never know for sure.

Looking For a Zebra: Fatigue, Tachycardia, and Hypertension

I took a year off of school for a few different reasons, some of them being medical. I was still experiencing low grade fevers constantly, fatigue, tachycardia, and hypertension. I was still very active, going to OrangeTheory Fitness classes a few times a week, along with lifting weights and swimming. Currently, I can barely walk my dog and my exercise consists of physical therapy. A few times, I went to OrangeTheory Fitness with my mom, and when I looked up at my name on the screen, I saw the number 212, which I thought was my score (I thought I was winning), but my mom realized it was actually my heart rate. At another point during this year, my blood pressure was in the 200s over the 200s. I went to an endocrinologist for my fevers, fatigue, and the general feeling that something was very off. She told me I was on so many psychiatric medications that they were making me “sound slow,” and that I just had fever of unknown origin. She also said that she was going to visit her family in India and could bring me back herbal supplements for the fever of unknown origin.

That being said, I did have severe anxiety at the time and was dealing with post-traumatic stress disorder. I had no idea what this meant at the time, but my psychiatrist told me to go to my primary care doctor and tell him “we’re looking for a zebra,” and even a pheochromocytoma. I saw several doctors that year, each who ordered different types of blood work. One doctor was so unsure what was happening that she ordered twenty two vials of blood. Yet, I was still left without any answers.

And Then Came Covid

After my mental health and anxiety had not improved with medication and therapy, my mom felt there still had to be an underlying issue. This is when she found and took me to a Lyme specialist in the fall of 2019, who immediately diagnosed me with Lyme disease and bartonella, and later, mast cell activation syndrome (MCAS). Physically, my symptoms were manageable. However, I contracted the first strain of COVID-19 in May of 2020, and my life has never been the same. Within the next few months, I started experiencing joint pain, severe migraines, vertigo, severe fatigue, and continued mental health issues. I even had to drop all of my classes in the fall semester of 2020 because I missed nearly two weeks of school from having a fourteen day long migraine. I began developing neurological and cognitive issues, such as trouble focusing and thinking and I had with memory. I switched to a different Lyme specialist, and this time I even tested CDC positive, which is more uncommon than not in those with Lyme. I started yet again another regimen of antibiotics and herbs. I spent most of that year couch ridden, sleeping much of the day, and constantly in hot Epsom salt baths to ease the joint and muscle pain. It felt like my mind and body were completely outside of my control, almost like my autonomy was taken from me. I was on several combinations of antibiotics until I eventually switched doctors again. This new physician was recommended by my Lyme literate dietitian, and was extremely knowledgeable of complex cases. I still see her to this day.

The next year I went back to school part time, only taking two classes each semester. Before the fall semester, I was diagnosed with babesia, and a few months into the semester I was diagnosed with hypothyroidism. These diagnoses often come together in the case of Lyme disease, but a new diagnosis is always a lot to take in. In class, I would forget what I was saying mid-sentence, which made me self-conscious and hesitant to participate. I struggled to balance the fatigue, physical pain, and brain fog with school. Yet, I successfully completed those two semesters.

Medication-Induced Pancreatitis

Finally, my senior year began: Fall of 2022. I was still attending part-time, but was now taking three classes as well as a lab each semester. In late September, early October I started having these acute episodes of severe pain in my upper abdomen that spread to my back. Because I have been medically gaslit so many times and I also have a high pain tolerance, I was nervous to go to the doctor. These episodes felt like I should have been in the emergency room, but because they only lasted an hour I was afraid to go to the hospital in fear that they would brush me off as a young female having stomach aches. I dealt with the pain for almost four weeks before I finally went to a doctor.

As it turns out, I had pancreatitis. I had to go on a mostly liquid diet for two weeks, stop taking my antibiotics and other supplements for Lyme, as doctors believed it was drug induced, with the culprit suspected to be rifampin, or the combination of too many other medications and supplements. I had been on various psych meds for years. Initially they were prescribed for severe anxiety and panic attacks and when I began to get sick, it only worsened. Among the medications I have been prescribed and used are several SSRIs/SNRIs (Prozac, Zoloft, Lexapro, Luvox, and Effexor). I have used sleeping medications such as Prazosin, Seroquel, and trazodone, as well as a tricyclic antidepressant, some benzodiazepines, Wellbutrin, Buspar, hydroxyzine, and different ADHD medications (Concerta, Ritalin, Vyvanse, Adderall, Straterra).

While pancreatitis mostly resolved, my Lyme started to continue to progress. I was having many more neurological and cognitive symptoms, my whole body was tremoring nearly every day, and I knew that we had to take action before the Lyme and coinfections progressed any further. I went back on antibiotics at the beginning of the spring semester, but had many Herxheimer reactions. I was out of it and sweating with fevers in class, all while also managing an internship. Within a few months my tremors became much better, indicating that the antibiotics were working. It was a long and stressful year, but I graduated Magna Cum Laude after having periods of extreme sickness where I questioned whether I would ever graduate.

Right now I’m on Anafranil, Buspar, Trazodone, Hydroxyzine, and Valium. As for Lyme and coinfections, I’m on clarithromycin, Tinidaloze, Valtrex, Mepron, methylene blue, (recently started), low dose Naltrexone, liposomal oil of cinnamon clove and oregano, cryptolepis, Researched Nutritionals MycP, phosphatidylcholine, vit D and C, omegas, ATP360 and CoQ10 for mitochondrial dysfunction (my doctor has suspected mitochondrial death/dysfunction after having COVID the first time, followed by long covid). I’m on a whole bunch of other supplements too to support my immune system, help with mast cell activation/histamines, digestion, brain function, etc. I’m taking between 50-70 pills per day with a few liquids mixed in there. I’m also on thyroid Armour for hypothyroidism as well as migraine medications and Zofran.

Chronic Illness Limbo: Neither Disabled Nor Able Bodied

Something that healthy people may not think about is having to choose your battles in terms of symptoms and treatments. For example, I started methylene blue shortly after graduation. Methylene blue, which is a medical dye, is a relatively newer, yet promising treatment for Lyme disease, but it is a monoamine oxidase inhibitor (MAOI). This means it can interact with psychiatric medications, and, therefore, I had to go off of all of my ADHD medications. The combination of an MAOI and a serotonergic ADHD medication can lead to both serotonin syndrome and a hypertensive crisis. The idea is that over time and with building up the dosage of the methylene blue it will minimize brain fog, a huge Lyme symptom, and help to treat ADHD symptoms. However, it takes quite a while to build up to an adequate dosage of methylene blue, and it also takes some time for it to actually show effects and improvements. Methylene blue treatment has been a bit brutal here and there with Herxheimer reactions.

One of the most daunting and frustrating things about Lyme disease, especially when it becomes chronic, is that there is rarely a trajectory or expected timeline to start feeling better or to reach remission. I’m currently still trying to find my way to remission, but cannot say I am close. Lyme Disease has turned my life upside down. At this point in my life, I thought I would be living up my twenties with either having already started graduate school or a big girl job. Something that people with Lyme disease, and those with other chronic illnesses as well, deal with on a regular basis is not being able to keep up with productivity culture leading to feelings of failure, laziness, or character flaws. Chronic illness is isolating, and, for many, it may feel like there is no place in society for us when we’re neither fully able bodied nor fully disabled. Instead of living up my twenties, I spend most days with my parents and my dog, I rarely drink alcohol or go out with friends, as it is difficult to maintain friendships when chronically ill. I am still trying to find a place to fit into society post bachelor’s degree, without a master’s or doctoral degree. I feel resentful of all of the doctors who misdiagnosed me or gaslit me, letting me go longer and longer undiagnosed, and therefore, untreated, allowing the Lyme to progress. However, I have found friends in the chronic illness community that, even though we have a variety of illnesses and different symptoms, understand the common struggles of chronic illness.

If you suspect you have Lyme, the best thing you can do is go to a Lyme literate doctor in your area, whose names and locations are usually spread through word of mouth due to the politicization of Lyme Disease, which can lead to possible repercussions for doctors who treat Lyme without CDC positive tests, which, like I said earlier, are inaccurate and are not often used as a basis for diagnosis.

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Atomic Imprint: A Legacy of Chronic Illness

by Genie

Published on May 18, 2023

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In a sense, my complicated health history began a decade before I was born. In 1951, on a chilly pre-dawn morning in Nevada, my father-to-be crouched in a trench with his Army comrades and shielded his eyes with his hands. Moments later, an atomic blast was detonated with a light so brilliant that he could see the bones in his hands through his eyelids, like an x-ray. The soldiers were marched to ground zero within an hour, exposing them to massive amounts of radiation. My father suffered many physical issues and died of chronic lymphocytic leukemia at 61 – a far younger age than usual with this disease.

Many of the soldiers exposed to atomic tests and military radiation cleanup efforts paid dearly with their health, and the legacy was passed on to their offspring in the form of miscarriages, stillbirths, deformities, retardation, childhood cancers, and chronic health issues. I never wanted children, in part because I was concerned that my own genes were affected by my father’s radiation exposure.

Early Markers of Ill Health

Physically, I didn’t feel right as a child. I had mononucleosis as a baby and needed a prednisone shot to get well. I was sick often and lacked stamina. I had mono again in high school and relapsed in college.

I fared well as a young adult, but then hit a wall in my mid-30s when I suddenly became chronically ill with digestive issues, insomnia, brain fog, and fatigue. A hair test revealed off-the-charts mercury poisoning, so I had ten fillings replaced and detoxed. All my hormone levels crashed, so I went on bioidentical hormone replacement therapy for a time. I recovered quickly but adrenal and thyroid hormone support were still necessary. I even fared poorly with the ACTH cortisol stimulation test to assess for adrenal insufficiency (“adrenal disease” beyond so-called “adrenal fatigue”).

In 2001, a DEXA scan revealed I had osteopenia at just 40 years old and I tested positive for elevated gliadin antibodies, a marker for celiac disease, the likely cause of the bone thinning. I went gluten-free and began lifting weights – thankfully, my bone density resolved. I shifted away from a vegetarian diet and gained muscle mass and energy.

Over the next several years, I had bouts of “gut infections,” resolving them with herbal antimicrobials. About a decade ago, the dysbiosis flares became more frequent and difficult to resolve. I tested positive again for mercury. This time I did the Cutler frequent-dose-chelation protocol and reduced my mercury burden to within normal levels according to hair tests.

A Labyrinth of Health Issues

My health issues were becoming more numerous, complex, and difficult to manage as I grew older. Besides the persistent sleep and digestion issues, I often had fatigue, pain, bladder pain, urinary frequency, restless legs, migraines, Raynaud’s, chilblains, and more. Managing all these symptoms was a real juggling act and rare was the day that I felt right.

As I searched for answers, I turned to genetic testing, starting with Amy Yasko’s DNA Nutrigenomic panel in 2012 and then 23andMe in 2013 to learn which “SNPs” (single nucleotide polymorphisms) I have. A Yasko-oriented practitioner helped me navigate the complexities of the nutrigenomics approach – that is, using nutrition with genetic issues.

I learned that genes drive enzymes that do all the myriad tasks to run our bodies (which don’t just function automatically), and that certain vitamins and minerals are required to assist the enzymes, as specific “cofactors.” Genetic SNPs require even more nutritional support than is normal to help enzymes function better. So my focus shifted toward using basic vitamins and minerals to support my genetic impairments. I now understood that I needed extra B12, folate, glutathione, and more. I began following Ben Lynch’s work in elucidating the MTHFR genetic issue, as I had MTHFR A1298C.

Also in 2013, given my struggle with diarrhea, I was diagnosed with microscopic colitis via a biopsy with colonoscopy. In 2014, I learned about small intestinal bacterial overgrowth (SIBO), which gave me a more specific understanding of my “gut infections,” and tested positive for methane SIBO. I worked with a SIBO-oriented practitioner on specific herbal treatments with some short-lived success.

At the end of 2014, I learned that I have Ehlers Danlos Syndrome (EDS, Hypermobile Type), confirmed by a specialist. I came to understand that my “bendiness” likely had implications in terms of chronic illness, and I saw my bunion and carpal tunnel surgeries in a new context, as part of this syndrome.

Even with these breakthroughs in understanding, I still relentlessly searched deeper for root causes.

Genetic Kinetics

In 2018, Ben Lynch published Dirty Genes, focusing on a number of common yet impactful SNPs.

I learned that I had NEARLY ALL of these SNPs – NEARLY ALL as “doubles” and even a “deletion.” (Deletions are worse than doubles; doubles are worse than singles.) Researching further, I had doubles in many related genes with added interactive impacts. Typically people might have just a few of these SNPs.

Understanding my “dirty gene” SNPs revealed that I could be deficient in methylation, detoxification, choline synthesis, nitric oxide synthesis, neurotransmitter processing, and histamine processing. Each of these SNPs could potentially impact sleep, digestion, and much more in numerous ways. Now I potentially had a myriad of root causes.

Lynch warns people to clean up their health act before supplementing the cofactors, whereas I’d cleaned mine up years prior. Sadly, I found only limited improvements in adding his nutritional protocol. Suffice it to say I felt rather overwhelmed and disheartened.

But at the same time, I gained vital and necessary insights. I now understood why I had mercury poisoning twice: detox impairments. I understood why I had Raynaud’s, chilblains, and poor circulation: nitric oxide impairments. My migraines could be histamine overload. I needed high levels of choline for the PEMT gene to prevent fatty liver disease and SAMe for the COMT gene. Much was yet still unexplained. So I relentlessly soldiered on, following every lead, clue, and a new piece of information.

Later in 2018, a friend who also has EDS encouraged me to learn about Mast Cell Activation Syndrome (MCAS), as many with EDS also have this condition. A few weeks later, I had a three-day flare of many issues, which prompted me to delve into the MCAS world, which was just as complex as the genetic approach. In working with an MCAS specialist, I honed in on three supplements, quercetin, palmitoylethanolamide, and luteolin, to help stabilize mast cells, which improved my bladder pain, bone pain, migraines, fatigue, and generalized pain. This was the culmination of months of research and work. All of this points to further genetic involvement, even though I lack specifics.

Downward Spiral

Twenty-nineteen brought further insights. I integrated circadian rhythm entrainment work. I tried a low-sulfur diet, suspecting hydrogen sulfide SIBO, which made me feel worse; and I began taking dietary oxalates somewhat more seriously after testing positive on a Great Plains OAT test. I did glyphosate and toxicity testing, which provided a picture of my toxic load. Testing also indicated high oxidative stress and mitochondrial issues (very interrelated). Hair Tissue Mineral Analysis (HTMA) testing, with the assistance of a specialist, helped me understand my mineral status and to begin rebalancing and repleting.

In 2020, I took a hiatus from all this effort, during which time I turned my attention towards personal matters, but 2021 has been a doozy in redoubling my health efforts. My digestion had worsened, so I focused on this area. I learned about sucrase-isomaltase deficiency, a lack of certain enzymes to digest sucrose and starch. I hadn’t tolerated sugar and starch for years, and I found I had a SNP for this condition. In January, a zero-carb trial diet helped me feel much better, so I continued. I tested positive for hydrogen sulfide SIBO, and I wrestled with this “whole-other-SIBO-beast” – in February trying again the low-sulfur diet and again feeling worse. Combining the zero-starch and low-sulfur diets left few options. Despite all my best efforts, I experienced a downward spiral with a loss of appetite, nausea, and vomiting every few days.

Discovering Thiamine

Around this time, I read an article about low thiamine (Vitamin B1) lowering intracellular potassium – I had been trying unsuccessfully to raise my potassium level in my HTMA work. I began following author Elliot Overton’s articles and videos on thiamine deficiency and oxalates. I was finally persuaded to take oxalates seriously. I then read the definitive book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” by Drs. Derrick Lonsdale and Chandler Marrs. I learned how B1 was key in many processes involving energy, digestion, and much more. I found that I had multiple SNPs in the B1-dependent transketolase gene, which is pivotal in several pathways. I gained some understanding of how all this related to some of my other genetic impairments, and why I might need high dose thiamine to overcome some issues.

All this was quite a revelation for me. It fit perfectly with my emphasis on vitamins and minerals to assist genes…but why hadn’t I learned of B1’s significance sooner?

In early March, I began my thiamine odyssey with 100 mg of thiamine HCL, upping the dose every couple of days. At 300mg HCL, I added 50 mg of TTFD, a more potent and bioavailable form of B1, then continued to up the TTFD dose every few days.

Similar to my experience with other vitamins, I was able to proceed rather quickly in dose increases. Many other people are not so fortunate and must go much more slowly. I already had in place most of thiamine’s cofactors (such as glutathione, other B vitamins, and methylation support) – so perhaps this helped me proceed more readily. Without these cofactors, peoples’ thiamine efforts often fail.

Magnesium is one of the most important thiamine cofactors, and for me, the most challenging. My gut cannot handle it, so I must apply it transdermally two or more times a day. At times, I had what I interpreted as low magnesium symptoms: racing and skipping heart, but these resolved as I continued.

Additionally, one must be prepared for “paradoxical reactions.” Worse-before-better symptoms hit me the day after thiamine dose increases: gut pain, sour stomach, headache, fatigue, and soreness.

My symptoms improved as I increased the dosing. When I added 180 mg of benfotiamine early on, my bit of peripheral neuropathy immediately cleared. This form of B1 helps nerve issues. As I increased my thiamine dosing, the nausea abated, my appetite came roaring back, and gastritis disappeared. Diarrhea, fatigue, and restless legs improved. I was able to jog again. My digestion improved without trying to address the SIBO and inflammation directly; the strict keto and low oxalate diets may have also helped.

In June, I attained a whopping TTFD dose of 1500 mg but did not experience further resolution beyond 1200mg, so I dropped back down. At 1200mg for a month, a Genova NutrEval test revealed that I was not keeping pace with TTFD’s needed cofactors, especially glutathione and its substrates. Not too surprising, given my malabsorption issues and my already high need for these nutrients. I dropped the TTFD to 300 mg, but quickly experienced fatigue. I’m now at 750 mg, which is still a large dose, and clearly, there is more to my situation than thiamine can address. I still have diarrhea and insomnia, and continue working to address these.

The Next Chapter

With TTFD, its cofactors, and my new gains in place, I’ve turned my attention towards a duo of genetic deletions that I have in GPX1 (glutathione peroxidase 1, one of Lynch’s dirty genes) and CAT (catalase). Both of these enzymes break down hydrogen peroxide (H2O2), a byproduct of numerous bodily processes. This unfortunate double-whammy causes me a build-up of damaging H2O2 and lipid peroxides – in other words, oxidative stress, a major factor in mitochondrial impairment, many diseases, and aging. This might be one of my biggest and yet-unaddressed issues, and I am digging deep into the published medical literature. This new chapter is currently unfolding.

I believe these two deletions are related to my father’s radiation exposure, for reasons beyond the scope of this article. But what about all the other SNPs? Many questions remain unanswered.

All my gains have been so hard-won, involving much research, effort, and supplementation. Yet what other options do I have, besides playing whack-a-mole and spiraling downward? Looking back, my improvements have been substantial, given the multitude of issues I’ve had to deal with. Perhaps now at 60, my life can start to open again to more than just self-care.

I hate to think of where I would be now, had I never come across the thiamine deficiency issue. I believe a number of factors had driven my thiamine status dangerously low earlier this year, such as malabsorption, oxidative stress, and hydrogen sulfide SIBO. I’m forever grateful to Lonsdale, Marrs, and Overton for their invaluable thiamine work that helped guide me back from the brink, and to the numerous doctors and practitioners who have helped me get this far. Perhaps my story can help others struggling with chronic health issues.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on September 23, 2021.

Progressive Deterioration of Health With Severe Nutrient Deficiency

by TJ

Published on February 2, 2023

5788 views

This is the story of my wife’s decline in health following the surgical reconstruction of a torn left hip labrum. I am writing this for my wife because her health has declined so significantly over the past 5 years that she has become medically homebound and bedridden. She is too weak and unbalanced to walk, has become intolerant to light, to foods (she can only eat 10 different foods without having a reaction), to smells, and is in constant and extreme pain. She has also developed severe skin reactions that are destroying her lower extremities. After seeing more than 50 doctors with little to offer, we are posting her story here in the hope that someone will be able to help.

Post-surgical Development of Complex Regional Pain Syndrome

Megan is a 44 year old female who was athletic, very active, and physically fit her whole life. Prior to left hip labral reconstruction on 6/20/2017, Megan did not take a single prescription. She led a very healthy lifestyle, in which she enjoyed playing tennis, doing yoga, swimming, biking, snowboarding, running, hiking, camping, and backpacking regularly. Postoperatively, she developed left foot edema, redness, allodynia, hyperalgesia, diminished proprioception, and balance, and burning pain in her left foot. Despite diligently participating in physical therapy 3 times weekly, she was not able to fade off of her crutches. She continued to have severe lower extremity pain and was diagnosed with Complex Reginal Pain Syndrome (CRPS) on 11/1/2017. In December 2017, Megan participated in an FDA-approved clinical trial of neridronic acid (bisphosphonate) infusions for CRPS without relief. She developed flu-like symptoms, which got progressively worse after each infusion, but eventually resolved.

Skin Manifestations

By January 2018, Megan started to develop lesions on her left foot. Initially, they were pinpoint to large flat lesions. Some of them were extremely itchy. Overtime, the lesions and rash spread up her ankle and shin on her left leg.

Skin and vascular manifestations of nutrient deficiency — Left foot edema and skin lesions May 2018 (left), June 2018 (right)

Over the next several months, while still attending physical therapy, Megan noted a lack of hair growth on her lower left leg, temperature discrepancies, in which the left foot was subjectively hot but objectively cooler than the right foot, blood pooling, and skin discoloration in her feet (dark red/purple) when standing, nail changes, and bilateral lower leg flushing following a warm shower. During this time, food sensitivities were also first observed – initially with beef and shrimp.

More Diagnoses But Little Help

In October 2018, Megan was evaluated by a physician at Brown Medical School, who is an expert with CRPS. He confirmed the diagnosis of CRPS (bilateral lower extremities) and in his provisional assessment of Megan, also diagnosed her with bilateral common peroneal neuralgia and bilateral foot drop. He also suspected Megan has mast cell activation syndrome (MCAS), orthostatic intolerance/dysautonomia (POTS), and hypermobile type Ehlers-Danlos Syndrome (hEDS) and was able to delineate which symptoms were consistent with CRPS and which were not. He did not attribute the blood pooling, the footdrop, flushing, lesions, rash, food intolerances and allergic-like reactions, dermographia, and other skin manifestations to CRPS. He recommended she be evaluated by another physician at the Steadman Clinic to assess for common peroneal nerve entrapment.

In October 2018, the Steadman doctor concluded that Megan did not have a common peroneal nerve entrapment. Instead, he noted irritations in the saphenous and obturator nerve distributions and diagnosed her with “bad luck”. He recommended Megan have an MRI of her lower back to ensure there is no central based pathology contributing to her bilateral symptoms. A lumbar MRI was conducted, which yielded no significant results.

Catastrophic Progression of Symptoms

All symptoms started after an orthopedic surgery on the left hip. Prior to the surgery on June 20^th, 2017, there is no significant medical history. She had a clean bill of health prior to surgery – no prescriptions were taken, no known allergies. In April 2018, we learned the hospital that performed the surgery was not properly sterilizing the surgical instruments and operating rooms between surgeries, which resulted in numerous infections, injuries, and illnesses, per an investigation.

New symptoms, which have appeared in the last 24-36 months include: heavy sweating, bladder incontinence (especially after eating and some while sleeping), sudden urge to urinate, sudden urge to drink water, decreased vision, extremely dizzy, and feeling lightheaded when standing. Brain fog has been getting progressively worse. Food reactions and extreme sensitivity to stimuli have been getting progressively worse and more frequent. Menstrual cycles have been getting progressively worse – worst symptoms and highest pain are observed during the cycle. Food reactivity is more likely and worse while menstruating.

Current treatment approaches have not resulted in any lasting or significant improvement. Despite intervention, symptoms have gotten progressively worse. Megan has been medically homebound since 2019.

Large patches of skin peel, turn white, and flake off ankles, shins, and legs below the knees. Clusters of tiny “pin prick” lesions appear on tops of both feet and on legs, including thighs. There is a lace-like pattern of purple/brownish skin discoloration above the knees (Livedo Reticularis), which continues up the thighs. The lesions, rash, and discoloration have been progressing up both legs. Skin/tissue on feet appear purple, blue, red, pink, orange, discolored, and shiny in places. There is no hair growth on both legs below the knees. Toenails on both feet are thick, crumbly, extremely brittle, and yellowish/brown. There is little to no growth of toenails.

Progression of skin symptoms over time. Left- April 2022; middle and right – December 2022

Feet and legs appear less reddish and flushed when elevated, however, they quickly turn purple upon standing. The purple discoloration fades when feet are elevated. Flushing is also present after showering and with temperature changes. Edema is present in both feet, ankles, shins, calves, and knees. An extremely painful, deep “itch” is felt in both feet and lower legs. Tremors are present throughout both legs. Standing upright elicits dizziness, tachycardia, presyncope/syncope, heart palpitations, and blurry vision (especially after eating).

Bilateral footdrop is present without a known cause. As a result, walking is exceedingly difficult, and assistance is required to move throughout the house. Balance, motor planning, proprioception, coordination, and gait have all been dramatically impacted. A wheelchair/transport chair is currently being utilized for community access.

Excruciating 9/10 pain in feet and lower legs. Hyperalgesia and allodynia observed. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees due to pain. Severe 8/10 “deep bone pain” in lower legs and shins. Severe 8/10 joint pain in shoulders, hips, knees, hands, fingers, ankles, and wrists. Muscle spasms and tremors (lower back/body), stiffness, and weakness in legs and arms. It is now difficult to type and to write due to pain in wrists, hands, and fingers. Lights, sounds, touch, and weather/pressure changes cause significant 7/10 pain.

Diet is currently limited to about 10 foods (has decreased over time) due to allergic-like reactions that occur immediately after and while eating foods. The severe reactions have resulted in 3 trips to the emergency room. Foods frequently cause swelling to the face, eyes, and lips, dizziness, nausea, excessive eye dripping and tearing, excessive post-nasal drip, and an extremely painful deep itch with a rash and “pinpoint” lesions to appear on legs and feet. Eating also evokes sweating, extreme fatigue, and tachycardia. Only fresh food is consumed. Leftovers are frozen immediately. The family has not been able to cook inside for over 3 years due to serious respiratory distress, reactions, and irritations to eyes, ears, and throat caused by smoke, scents, and odors. In addition to scents, there is an extremely heightened sensitivity to light and sound. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees.

Nutrient Deficiencies

Over the last year, we have learned that Megan suffers from several nutrient deficiencies, including thiamine, which was measured at only <6 nmols/L in December. After stumbling upon a case story about thiamine deficiency here, it is difficult not to wonder if low thiamine was responsible for her rapid decline in health following the surgery. Many of the symptoms she developed immediately following the surgery, the muscle weakness, edema, foot drop, proprioceptive difficulties are indicative of low thiamine. Over time, she developed an intolerance to most foods, which, from what I understand, is also common with thiamine deficiency. This then spiraled into other sensitivities (light, sound, and scent, etc.) and other sets of bizarre symptoms. In fact, as I do the research, I am learning that many of her ‘diagnoses’ are not independent diseases but could actually be manifestations of the low thiamine.

Of course, as her health declined and her ability to safely tolerate foods also declined, other deficiencies likely came into play. The skin issues may be related to deficiencies in vitamin A, which we have tested, and vitamins D and K, which we have not yet tested. She is also severely deficient in vitamins B12, C, and has low iron, copper, and zinc. Each of these can contribute to a wide variety of symptoms and compound her already poor health.

Copper Deficiency 2/16/22
Ferritin Deficiency 3/8/22, 8/12/22
Zinc Deficiency 8/12/22
Vitamin C Deficiency 8/12/22
Vitamin A (Retinal) Deficiency 12/9/2022
Vitamin B1 (Thiamine) Deficiency 12/9/2022
Vitamin B12 (Cobalamin) Deficiency 12/9/2022

Current Symptoms

General: heavy fatigue, migraines, low-grade fever, flushing, swollen lymph nodes, night waking, early waking, difficulty falling asleep, and daytime sleepiness
Eyes: droopy eye lids, blurry vision, eye dripping, and excessive tearing
Ears/Nose/Throat: hoarseness, stuffiness, sore throat, postnasal drip, heightened sense of smell, sinus pressure, ear ringing and buzzing, headache, migraines, sensitivity to loud noises, sores/ulcers on the roof of mouth and tongue, swelling of face/lips/throat, and lips/throat feeling “tingly”
Heart: tachycardia, palpitations, swollen ankles/feet, edema, and blood “pooling” in legs
Respiratory: shortness of breath/breathlessness, coughing, and wheezing
Gastrointestinal Tract: bloating, cramping, acid reflux, alternating diarrhea and constipation, excess flatulence/gas, indigestion, nausea, and poor appetite
Urinary Tract: the sudden urge to urinate, and mild bladder leakage/incontinence
Musculoskeletal: muscle spasms, tremors, cramps, joint pain, joint stiffness, and muscle weakness
Skin: rashes, hives/welts, hair loss, itching, swelling, skin peeling and flaking, livedo reticularis, excessive sweating, “pinpoint” lesions, flat-reddish lesions, and dermatographia
Endocrine: cold intolerance, heat intolerance, urge to drink water, abnormally heavy/difficult menstrual periods, chills, and shaking
Neurology: difficulty concentrating, difficulty thinking, difficulty balancing, brain fog, dizziness, light-headedness, tingling, and tremors

Previous Medical History

Infected with Epstein-Barr/mononucleosis: 1993
Pityriasis Rosea in 2011
Infected with antibiotic resistant strep throat in 2012
Left hip labral tear in 2016
Right hip labral tear in 2016
Erythema ab igne (due to heating pad) in 2017
Left hip arthroscopy on 6/20/2017
- Femoral osteoplasty
- Mild acetabular rim trimming
- Minor shaving chondroplasty
- Acetabular labral reconstruction – transplanted labrum made from 11cm graft (cadaver tissue)
- Capsular closure
- Arthroscopic greater trochanteric bursectomy
- Windowing of IT band
- PRP injection
FDA Clinical Trial of Neridronic Acid for CRPS 12/2017

Current Diagnoses

Right hip labral tear, FAI/CAM Impingement, Bursitis, 2016
Complex Regional Pain Syndrome (CRPS) 11/1/2017
Suspected Ehlers-Danlos Hypermobile Type (hEDS) 10/1/2018
Suspected Histamine Intolerance/Mast Cell Activation Syndrome (MCAS) 10/1/2018
Bilateral Footdrop 10/1/2018
Bilateral Common Perineal Neuralgia 10/1/2018
Orthostatic Intolerance/Dysautonomia (POTS) 10/1/2018
Alternaria Alternata allergy 11/13/19
Secondary Polycythemia 1/5/2020
Hashimoto’s Thyroiditis 9/14/2021
Tinea Pedis Onychomycosis 12/2/2021 (misdiagnosed and overlooked for at least 2 years)
Elevated Leukotriene 2/16/22
Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS) 9/6/2022

Current Medications

(updated 1/15/23)

Morning (Before breakfast)	Evening (Before dinner)	Late Evening (Before bed)
Naltrexone (LDN) 4.5 mg	Vitamin C 1000 mg	Metoprolol 12.5 mg
Singulair (Montelukast) 10 mg	Zinc (sulfate) 25 mg	Neurontin (Gabapentin) 300 mg
Aspirin (NSAID) 81 mg	Copper 2 mg	Vitamin B1 (Thiamine) 100 mg*
Tagamet (Cimetidine) 200 mg	Iron 50 mg	Topical Terbinafine Cream (PRN)
Zrytec (Cetirizine) 10 mg	Tagamet (Cimetidine) 200 mg
Synthroid (Levothyroxine) 50 mcg	Zrytec (Cetirizine) 10 mg
Quercetin 500 mg	Quercetin 500 mg
Neurontin (Gabapentin) 300 mg	Vitamin B1 (Thiamine) 100 mg*
Vitamin B1 (Thiamine) 100 mg*

*Vitamin B1 (Thiamine) started 12/23/22

Previous Medications

Short-term Prednisone (following ER Trip) provided significant relief of pain, skin rash, lesions, reduced swelling, and allowed more foods to be tolerated. Produced significant improvement of symptoms.

Ketotifen – This medication was introduced and then discontinued due to potential side effects and lack of progress. Megan was taking 1 mg
Cromolyn – This medication caused mouth ulcers (white spots) to occur, and it was discontinued. A nebulized form was prescribed but given without instructions as to how to introduce.
Xifaxan – 10-day antibiotic course completed on 7/18/22 without improvement

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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The Red Thread and Thiamine

by Joanna

Published on January 19, 2023

14326 views

There is a saying in China about a Red Thread connecting people who are destined to meet and/or help one another in a profound way no matter how far apart they may be. Our adopted daughter Abby is that red thread. Abby was abandoned and found on the day our oldest daughter, Kayla, turned thirteen. It was at this time Kayla’s health issues were becoming worse. Although we didn’t know exactly what was amiss, we knew that something was wrong. In our efforts to help Abby, our family’s health issues were brought into stark relief. It seems that all of us have suffered from longstanding thiamine insufficiency. Even though my two daughters were born worlds apart, that red thread connects us. We published Abby’s story last week in the hopes that it might help someone else. Here is Kayla’s story.

Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

Common sayings like ‘you are what you eat’ can be haunting, leading to guilt when we see our children suffer the consequences of our own ill health, especially during pregnancy. My gut was messed up and had been for a very long time before becoming pregnant. I was likely deficient in thiamine and other nutrients and perhaps that is why I struggled to get pregnant in the first place. Sometimes gut dysfunction is obvious, as with constipation or diarrhea, but more often it manifests itself in other ways. That was me. I had/have Ehlers Danlos Syndrome (EDS) and most likely also, Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia syndrome (POTS). I did not know any of this though before pregnancy and have only recently, after hours upon hours of research, come to learn how my health impacted my daughter’s health.

Kayla was our first hard-fought-for child. We were married 10 years and had undergone numerous fertility treatments before we finally achieved a successful IVF. Looking back, I realize that I was not healthy prior to or during my pregnancy, even so it was mostly an uneventful pregnancy with little to no typical unpleasantries. I had low progesterone early on that required progesterone injections and suppositories, but after 13 weeks everything stabilized. I had a high blood pressure reading at only one routine visit in my 39th week. The doctor decided to induce. We didn’t question it at the time, but later did. At the hospital, he administered Pitocin, a synthetic oxytocin, without any nurses in the room and left. The nurses later commented that they were surprised, since my blood pressure was back in the normal range upon admission. Pitocin is just one of my regrets. Why was my body not triggering labor? Gut dysbiosis? Maybe/possibly/probably or maybe she just wasn’t ready to come out.

A Truly Gifted Child

Kayla was an extremely bright child. She wanted to learn chess at four years old. By age 9, I stopped playing with her because she always won. She gave her math brilliant-grandfather a run for his money. She was homeschooled through 9th grade followed by private and then public school. She was a straight ‘A’ student, participated in various athletics (swim, track, dance, horse riding, etc.) and mastered two musical instruments by the end of high school. Kayla ranked in the top 5th percentile nationally and did well in first semester of college, but little did we know how precarious her health had become. Perhaps because of her intelligence and achievements, many of her health issues and difficulties were disregarded by physicians. On the surface, she looks well. She is very high functioning, but she has been plagued with an assortment of complicated and largely unrecognized health and neurological issues since birth. During her first semester of college, a series of stressors brought her health crashing down and she is only now beginning to recover. Part of her recovery has been diet, part involves thiamine, but we are still missing some pieces, which is why we are publishing her story.

Early Childhood Symptoms and Triggers

Her early childhood was marked by early bouts of bronchitis necessitating antibiotics. She suffered croup through age 7 years and seasonal allergies through her teens for which she used Claritin regularly. Nighttime enuresis was a problem until we removed gluten from her diet when she was 12 years old. Similarly, her speech was often and seemingly randomly slurred. She received speech therapy through the school to no avail. In 2018, we removed dairy from her diet and the slurring disappeared. It appears that just as a gluten reaction triggered her nighttime enuresis, the ingestion of dairy was some sort of trigger for her slurred speech. I should note, before learning this, we experimented with probiotics, fish oils, digestive and pancreatic enzymes, and a variety of other supplements off and on for years with no noticeable or lasting changes. Her younger years were marked also by body temperature dysregulation, i.e., hot in the winter, cold in the summer. Finally, most things, not all, came easy to her. She had extreme strengths and weaknesses with her strengths often masking her weaknesses. Noticed by many of her extracurricular teachers hard things seemed easy, and easy things hard. Her brain craved complexity.

Vaccinations, Cyclic Fevers, and Green Drinks

In her preteen years, she received numerous vaccinations (required and strongly recommended) prior to our trip to China to adopt her sister. Shortly after, she began to develop worsening mood swings, anxiety, depression, brain fog and has experienced dizzy spells off and on since then.

When her menses began, she bled heavy for three straight weeks. Her doctor put her on birth control pills to stop it; again, a symptomatic treatment. She was borderline to severely anemic and often had PMS and painful periods.

During her teen years, she had repeat and unexplained fevers. She was sick with high fever/flu-like symptoms for three days every four weeks for three years. She’d get sick like clockwork! She would become weak, sleep a LOT, as if she were in a coma. Her doctor was stumped. I had been reading a lot about the use of systemic enzymes used by German doctors. The book by Karen DeFelice mentioned viruses often have a cyclical pattern. So we used high doses of ViraStop2x according to her protocol for a 3-week “holding spell” and it was gone. No more cyclical episodes.

In trying to get healthier, she began “green drinks” (spinach/fruit) 5-6x week. Six months later she was very sick: anemic again, double ear infection, abnormal EEG with heart palpitations, chest pain, and shortness of breath. The cardiologist had put her on a heart monitor for three days, but the results were normal. Perhaps oxalates? I began learning more about oxalates and we began eating less of these foods overall. I’m grasping at straws…

The Red Thread and Thiamine

In 2018, we learned about TTFD/thiamine and began taking Sulbutiamine. My younger daughter, Abby, has improved immensely. In fact, my entire family now uses thiamine and we all feel much better. Before taking thiamine, we all used to be so tired after spending a day at the beach and everyone would need to nap. Now, after supplementing with thiamine for a while, everyone still has high energy levels after these trips. Except for Kayla. Her results with thiamine have been mixed. There seems to be more at play. Perhaps she requires a higher dosage of thiamine or maybe additional nutrients are needed.

Her recent labs for CBC/CMP, thyroid, A1C, vitamin D are all normal. Manganese is low and prostaglandin F2 is elevated. There is some indication of malabsorption based on her bloodwork. Recently, an Organic Acids Test indicated normal oxalates, low dopamine and serotonin, and extremely high ketones/fatty acids. She has had high folate levels in the past, but at present are normal. Her B12 levels at present are elevated.

In 2019, she began having occasional extremely painful periods where she would be on-the-bathroom floor curled in the fetal position until Ibuprofen kicks in. Her skin is often very pale. Her doctor is not concerned about the increasingly painful menses or the ketones/fatty acid elevations.

My frustration as a parent is that because most of my child’s bloodwork is normal, the doctors write-off her symptoms as stress-related and recommend things like yoga, meditation or saunas or some fluff. Not that these things are bad, but there is something more at work here and no one seems interested in figuring it out. I am bothered that when they do see markers of inflammation or malabsorption they ignore them or really don’t know what to make of it.

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

Over the course of these last years, I have come to realize how important diet and environment are to health. When the pond is poisoned, sadly the tadpoles are hit first, are hit the hardest and display the affects most noticeably. Our youngest child was hit hard. Her circumstances prior to adoption were not conducive to health and she has had many struggles to overcome those early stressors and nutrient deficiencies. Likewise, owing to my ill-health prior to and during my pregnancy and the subsequent western medical treatments, Kayla struggles too. The pond was poisoned for both of them. All lifeforms that drink from a poisoned pond will manifest problems at some point, in some way. Perhaps if we had known about thiamine when they were younger, their problems wouldn’t have manifested the way they did.

Fortunately, Kayla has always eaten healthy, and has been active and athletic throughout her life. As an adult, she experiments with the removal of foods for periods of time to see if things improve, such as grains or cow’s milk and she is cooking creatively. She has been sugar-free for over a year. She takes vitamins and minerals and Sulbutiamine. She recently switched to Lipothiamine and Allithiamine and is now slowly increasing it to see if her dizziness will abate at some point.

I would trade all of her past accolades to have her in better health. We don’t know where her road will lead. Healing is multi-dimensional and someday we hope to look back at today with those oft used words “remember when…”.

Michelangelo was nearing 90 when he said “I am still learning.” I hope to be too.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This story was published first on August 31, 2020.

Reversing Mast Cell Activation and Histamine Intolerance Summit

by Chandler Marrs, PhD

Published on October 5, 2022

6488 views

Our bodies and brains are capable of incredible things. One of the most fascinating things we’re capable of is perceiving danger before we’re consciously aware of it.

It’s part of the fight or flight response – like jumping out of the way of a bus before we can think to do so.

Unfortunately, our bodies can get this response wrong sometimes.

For example, when our immune systems have been strained for a long time, the mast cells at the frontlines can get exhausted and dysregulated, causing our immune systems to attack indiscriminately. Our body enters “fight” mode for no real reason.

This reaction is called Mast Cell Activation Syndrome (MCAS) and it can make daily life a struggle.

Most people with MCAS see multiple specialists and feel like they’re the only ones dealing with this. But the truth is, up to 17% of the general population is dealing with this health condition! And it doesn’t have to be a mystery any longer.

In my talk at the Reversing Mast Cell Activation and Histamine Intolerance Summit (October 18-25), I discuss how thiamine can help to stop your body from attacking itself and give you the energy to heal.

Some of the topics covered in my talk include:

The role of thiamine in cellular energy
Anti-thiamine factors in common foods and medications
What modern thiamine deficiency looks like
Thiamine’s role in sensitivities, intolerances, and other reactions

Some of the other speakers will cover:

The most common causes and underlying triggers of MCAS and histamine intolerance
How to safely detox from heavy metals, pesticides, and other toxins without triggering a negative reaction
How to overcome hypersensitivity to food, fragrances, and household products so you can live a “normal” life again
How to recover from brain fog, cognitive decline, and memory loss that so often accompany MCAS and HI
The power of epigenetics to turn “off” your hypersensitivity response
How to reverse chronic GI reactions like IBS and constipation
Diet and lifestyle factors that make Mast Cells worse (and how to change your diet without causing a hypersensitive response)
The role of peptides, sauna, PEMF, and more in healing from MCAS and HI
The impact of the Cell Danger Response and the survival paradox in reversing MCAS

And more!

Get your ticket to the summit here – no charge.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Severe Gut Dysbiosis, MCAS, and Oral Lichen Planus

by Russ

Published on December 29, 2021

13221 views

I have severe gut dysbiosis, and suffer from frequent urination, sensitive bladder, and functional dyspepsia. Testing shows that I have system-wide bacterial and fungal overgrowth, oral lichen planus, mast cell activation syndrome (MCAS), histamine intolerance and severe food sensitivities. I also have problems with my feet. They are very dry, tend to swell up, and there are weird itchy red sores that may be related to athletes foot or to something else.

Over the last two decades my diet has become increasingly restricted and I now am only able to tolerate white sushi rice and lean animal meats. Whenever I stray from that diet, I get severe mouth/throat/upper gut inflammation. As a result, I am severely deficient in a number of vitamins, which I have to inject, as I cannot tolerate them orally. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients, but given the reactions I have to most foods, I do not know how.

Early History of Poor Diet

As a kid I ate a lot of sweets and didn’t have the best diet. I took a normal amount of antibiotics as a kid but had a lot of strep throat and colds. In 1997, I had the chicken pox at age 23. It was a mild case. I became more health conscious in my mid 20s and after I got campylobacter food poisoning in 1998, from food purchased from the fast food restaurant Wendy’s. I was treated with ciprofloxacin and made a full recovery. After that, I completely stopped eating fast food. I would say my diet was pretty balanced up until 2002 when I got sick. I should note, I was first exposed to black mold in 2000 and again in 2015.

The Long Decline

In 2002, I was on a 6 month course of Levaquin for a prostate infection I didn’t even have. Shortly after, I contracted giardia on a kayak trip. I developed post-infectious gastritis and severe lactose intolerance. In 2004, I had mercury exposure from dental work and developed the early stages of histamine intolerance. I then developed gluten intolerance in 2006 and IBS symptoms with constipation.

Nevertheless, I was stable for a number of years and in 2007, I contracted Lyme, Bartonella, Babesis and Mycoplasma. I tested very high for mycoplasma as well as other infections like Epstein Barr Virus. From there, I then went on to develop frequent urination, sensitive bladder, and functional dyspepsia. I developed oral lichen planus in 2008.

In 2011, I was prescribed Xifaxan, a drug used to treat IBS with diarrhea or traveler’s diarrhea, and it gave me chronic bloating, which I have had ever since. I had walking pneumonia a few times (mycoplasma) and possibly whooping cough in 2012.

In 2015, I had the flu and was under a lot of stress and had a major autoimmune flare up. I developed geographic tongue and the lichen planus got worse, as did my histamine intolerance. I was exposed to black mold and aspergillus during this period as well. My digestive symptoms got worse.

Increasingly Restricted Diet

In 2018, I took a high dose of probiotics that I had been taking for years and doing well on and it triggered some kind of major mast cell reaction in my upper gut. I have had reflux and gastritis-like symptoms ever since. My MCAS got worse and since 2018 I have been losing the ability to eat more and more foods without a reaction. Last year I tried low dose naltrexone and I had a severe autoimmune reaction to it. I have become even more hypersensitive to environmental triggers like pollution and pollen.

Right now I am 40lbs underweight and survive on white sushi rice and lean animal meats every single day. If I try to eat any plant based food, I get severe mouth/throat/upper gut inflammation. I also believe I have hydrogen sulfide SIBO. In September, I did a nasal culture which showed large amounts of coagulase positive staphylococci. My throat culture showed large amounts of streptococcus A and pseudomonas. My gut also tested positive for actinomyces.

Multiple Vitamin Deficiencies

For years my Vitamin D was suboptimal and recently tested and its 19 ng/mL. I had been giving myself weekly vitamin D injections, as I can’t tolerate any supplements, but I have recently stopped because they caused some new symptoms including: headache, dizziness, off balance, visual disturbances and loss of appetite. I am still dealing with issues a few weeks after stopping the injections. I read this can be a common side effect when people do not respond well to cholecalciferol. My plan is to purchase a special UV light for vitamin D and will try to raise my levels naturally. This is an ongoing theme. Whenever I make a little progress, I always seem to get a setback in some form, which makes this very frustrating. I also inject B complex and B12 which seems to really help with my reactions. I am very nutrient deficient especially in fat soluble vitamins and vitamin C. Currently, I rub these vitamins on my skin and also use nasal resveratrol.

I must treat this severe dysbiosis somehow and am leaning towards antibiotics since I can’t tolerate probiotics or herbal formulas. I need to be extremely careful and have to come up with a really good protocol. I need to micro-dose and make sure I use the right antibiotic or combination of antibiotics. I also don’t want to flare up my gut or make my problems worse. If anyone can help me I would be grateful. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients. Thank you.

Update

As of December 2021 I have not made the least bit of progress towards recovering my health. I went for Lyme treatment at the New York Center for Innovative Medicine this Summer and was extremely optimistic and hopeful that this would cure me. A close friend of mine went there and got her life back. Sadly, I am now 5 months post treatment and don’t feel even a tiny bit better in fact many of my old symptoms have resurfaced.

A year ago, I had black mold exposure which caused vestibular trauma and also gave me a visual processing disorder. So I now have to deal with visual and balance issues on top of debilitating daily gastrointestinal symptoms. For 18 months, I have been eating white rice, poultry breast, egg yolks and cod and my esophagus and stomach will flare up if I consume even a tiny piece of any vegetable. I have severe depression, anxiety, and am living in fear every day of my life. I spent $60,000 on medical expenses in 2021 and have absolutely nothing to show for it.

I am going to a special gastroenterology clinic in Ohio in March and will probably get an endoscopy. I am afraid this test will make me worse but I just have no options. I still think I have some kind of stealth infection or parasite in my gut that is causing all these issues. If anyone has recommendations for me I would be grateful.

Every single day I am losing more and more hope and am not sure how much longer I will survive. I am having my will drawn up because I just don’t see a future for myself. On top of this my stepfather was just diagnosed with stomach cancer and is going through chemotherapy now and the whole family is stressed out and this is taking a toll on me emotionally. Thanks for listening.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

This story was first published on February 4, 2021. It was updated on December 29, 2021.

MCAS

Early History

College Dorm Flu Masked My Infections – Until My Vocal Cords Went Haywire

Looking For a Zebra: Fatigue, Tachycardia, and Hypertension

And Then Came Covid

Medication-Induced Pancreatitis

Chronic Illness Limbo: Neither Disabled Nor Able Bodied

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Early Markers of Ill Health

A Labyrinth of Health Issues

Genetic Kinetics

Downward Spiral

Discovering Thiamine

The Next Chapter

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Post-surgical Development of Complex Regional Pain Syndrome

Skin Manifestations

More Diagnoses But Little Help

Catastrophic Progression of Symptoms

Nutrient Deficiencies

Current Symptoms

Previous Medical History

Current Diagnoses

Current Medications

Previous Medications

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Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

A Truly Gifted Child

Early Childhood Symptoms and Triggers

Vaccinations, Cyclic Fevers, and Green Drinks

The Red Thread and Thiamine

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

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Early History of Poor Diet

The Long Decline

Increasingly Restricted Diet

Multiple Vitamin Deficiencies

Update

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