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Early Abuse, Poor Nutrition, Endometriosis, and Thiamine Deficiency

Published on October 11, 2023

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child abuse, endometriosis, thiamine deficiency

I feel like I was born sick. I feel like despite working passionately and obsessively hard at reaching for good health, every single minute of every single day of my life has required Herculean effort. I am the product of an abusive childhood. There have been studies done that an abused child invariably grows into a sick adult. I believe this to be true. I think my adrenals were burnt out by the time I was 2 years old.

My earliest memory is at 14 months old. I was wearing a new Easter dress and my mother wanted to take my picture. I remember looking beside me and seeing a flower and wanting to smell it. As I bent down to smell the flower, which is not what my mother wanted me to do, rather than taking a picture of her lovely soft toddler smelling a flower, she whacked the back of my head and smashed my face into the concrete.

The attacks were always this way; brutal and unpredictable. My face was held in a bowl of hot stew because I wasn’t chewing the way she wanted me to when I was 3 years old. I am tightly tongue-tied and tongue-tied children struggle with being able to manipulate the chewing-swallowing process. We were made to sleep naked and shivering in the bathtub when we had stomach flu so that she wouldn’t have to clean our sheets. I don’t remember a single day of my childhood that was not filled with the crazy butterfly feeling in my stomach of being in continuous flight/fight or freeze, although “fight” was never an option. I imagine I used up all my B vitamins in infancy and they were not replaced. I do assume that the abuse was experienced in very early infancy.

Low Nutrient Diet

Conditions I have had since early infancy include intractable insomnia, constipation, severe motion sickness and histamine intolerance. I don’t imagine that this mother, whose coping mechanisms allowed her to smash a baby’s head into concrete, would have allowed for a kind and gentle response to an infant who could not nurse properly (due to the tongue tie), or could not sleep, had tummy pain from constipation, and vomited every time she put me in the car.

I do have a brain that has a higher than usual requirement for nutrients. I was a self-taught reader. I was reading at a second grade level by the time I was 3 years old, and thankfully, was put into the school system early. This turned out to be the only hours in my day where I wasn’t anticipating abuse.

Although we were comfortably middle class, we were raised on a very low nutrient diet of my mother’s comfort foods. We had cereal for breakfast. Lunch and supper were almost invariably white rice cooked in milk and generously topped with sugar and cinnamon, or noodles with butter and sugar, or pancakes with jam or sugar, or bread with butter and sugar followed by cake or pie.

Headaches, Nausea, Infections and Joint Dislocations

As a child, I had daily headaches, frequent nausea, very low energy, frequent infections, muscle pain all over my body, and joints that subluxed/dislocated. I almost always have at least one joint dislocated, most commonly thumbs, wrists, ankles, ribs, cervical spine, TMJ. Additionally, I was diagnosed with scoliosis, asthma, and anemia. At 12, the family physician told me I would be in pain for the rest of my life because of the multiple fractures I’d sustained to the coccyx, torn ligaments in the SI joint, and a rotated pelvis. What a thing to tell a young child! His only solution was that I should take Tylenol every 3 hours for the rest of my life, which was no solution at all. I have continuous low back pain, an SI joint that dislocates daily, and hips that have torn labrums and dislocate or sublux. I was a competitive figure skater and took many falls. I competed with broken toes, a broken tailbone, and took many blows to my head.

I am in constant pain and cannot remember a time when I was not. Currently I can stand for only periods of 30 seconds or less before having to lie flat on the ground to relieve the pain. I had an insatiable appetite. I could eat easily 3 to 4 times the size of servings that my father would eat, and I’ve never had a “full button”. I have always been extremely underweight, despite eating huge amounts.

Endometriosis, Veganism, and Osteopenia

My menstrual cycle started horribly when I was only 10 years old, and I went through seven laparotomies in my lifetime with diathermy. They were all excruciating and left me emaciated, butchered, and in intractable agony. The surgeries were done by General OBGYNs who had absolutely no business doing stage 4 endometriosis surgeries. I also do not respond normally to medications. For example, morphine increases my pain response, and I essentially went through the first two major surgeries with no pain relief.

As a teenager, in order to try to cure myself, I started experimenting with diet. I regrettably turned to vegetarianism / veganism and continued with veganism for 24 years. As I got weaker and weaker and more and more sick, I figured I only had to be stricter with my diet and eventually ended up eating only raw fruit and vegetables. Despite all this, I headed off to University at the age of 16, and completed a double degree with a 4.0 GPA on a 4-point scale in 4 years.

Now came an endless circus of doctors and specialists who would laugh at me or throw away the list I brought in of my symptoms. They told me that if I could not even remember my symptoms and had to write them down obviously I was making them up.

I was diagnosed with osteopenia at age 24. I was given the bone density test as a precaution before being prescribed Lupron. Thankfully, the osteopenia diagnosis helped me narrowly avoid the disaster of Lupron. I have been given diagnoses such as IBS, fibromyalgia, depression, generalized anxiety disorder, lupus and arthritis (based on anti-DNA positive test), and celiac disease.

Idiopathic Fractures, Word Loss, and Prosopagnosia

After 24 years of being a vegan, I spent three weeks in critical care with toxic shock. On my first day home from the hospital, I began experiencing idiopathic bone fractures that would take 4-months or more to begin to fuse. I was losing my words and experiencing prosopagnosia (the inability to recognize faces of people, even those whom I saw every day such as my niece and nephew, and my best friends and their children).

I developed migraines, receding gums, difficulty swallowing, crazy painful gas, sleep apnea, hypnogogia. Hypnogogia is a sort of “waking nightmare”. It is a lapse in the sleep/wake bridge where you become suddenly awake. Your eyes are open, but you are paralyzed and your nightmare is playing out in your room. It is indescribably terrifying. I also developed voice box dysfunction, heart palpitations, and often, I could feel my heart stop/pause. Then I would fall to the ground and I would feel it rapidly start again to catch up the beats. This is in addition to many other symptoms, too many to list.

No More Veganism but Continued Ill-Health and Progressively Worsening Endometriosis

It was at this point I decided that being a vegan was indeed killing me and I switched to a whole foods only diet that included meat, eggs, cheese, nuts, and vegetables. I consumed no sugars in any form, no grains, and zero processed foods. I tried every single miracle supplement that I could lay my hands on, and nothing was making any difference.

I was just trying harder and harder and getting sicker and sicker and was so jealous of all the people that seem to breeze through life, eating crap, where I struggle to hold my arm up long enough to brush my teeth.

My endometriosis was destroying me. I would bleed through the menstrual cups that are meant to last 12 to 18 hours literally every 7 minutes, just lying on the bathroom floor and getting up only to empty the cup. I gathered the blood from the cup during one cycle (too much information, I know) and it filled a peanut butter jar.

I wanted to do this to take it with me when I went to the ER because no one would ever believe me when I tried to describe how much blood I was losing. I had a final endometriosis surgery with complete hysterectomy at age 40. The surgery was done by a specialist whose only job is endometriosis surgeries, and she said mine was the worst case she’d ever seen. The surgery took 7 and 1/2 hours.

A Glimmer of Hope and a Setback

I was lucky enough before this surgery to have been referred to a psychiatrist (because I am crazy and create all these painful and debilitating symptoms to amuse myself) who ended up being a functional medicine enthusiast and Fellow.

His treatments are based almost exclusively on bioidentical human hormones and nutrients (though he has never mentioned thiamine, and is unaware of Dr. Lonsdale’s work). The combination of finally finding a physician who not only listens to me (he spent over 3 hours with me and my first consultation), but also believes me, and getting rid of the constant pain and bleeding were a big blessing for me.

I discovered a magnesium supplement that I could tolerate, and for the first time in my life I was sleeping like a normal person, and having normal bowel movements. My energy was good and I felt well. UNTIL my beloved husband suffered a heart attack. He is well now, but the shock and the fear were the final straw on this camel’s back.

I came down with mononucleosis about 3 weeks after his heart attack. My spleen was grossly swollen and I was bed bound for over 4 months. I felt that any progress I had made had completely disappeared and I was back to being an intractable insomniac with every other symptom just blown out of proportion.

The Ray Peat Diet Mistake

It was at this time while researching “lifelong insomnia”, I came across the suggestion to try niacinamide. It helped so much, and I wanted to look further into the doctor who suggested this. It was the infamous Dr. Ray Peat.

Since I had gone so many years eating only whole foods and no sugars in any form whatsoever and I was still sick, the thought crossed my mind that maybe Dr. Peat was correct. So the second worst decision of my life (after the first worst decision of becoming a vegan) was to try the Ray Peat diet of as much natural sugar as I could get in my body… juices, skim milk, fruit (I would literally eat a whole watermelon in a day)

Stupid, Stupid, Stupid, I know. I was grasping at straws.

A few months into this, I experienced my first panic attack, if you can call it that. I was pulled out of sleep by this searing sick Heat at the center of my stomach that rushed all through my body. I can’t describe it accurately, but it felt like I’d been poisoned and was going to die within minutes.

Little that I did I know that this condition would plague me for the next 3 years. When I spoke to my psychiatrist about it he said, “That’s not a panic attack. A panic attack lasts few minutes and resolves.”

Maybe Carnivore Would Help? Or Not.

My “panic attacks” were happening easily 20 times a day and resolving only to a slightly less severe form of anxiety. It would pull me out of sleep a dozen times each night. I composed a suicide note to my husband, because he was the only reason that I was staying on the planet. The same day I wrote the note, I came across Dr. Berg’s videos. Once again, I became convinced that another dietary regime would finally solve all my problems, and that very day I started a keto diet. I became even skinnier, and the anxiety receded so that I was only having one panic attack early each morning. This was a vast improvement, but I started to have reactions to most of the vegetables I was eating on keto and became aware of quite a severe sensitivity to oxalate, so I switched to carnivore and experienced no symptom improvement after six solid months. This was consuming 2kg of beef a day. I had no sense of satiation and was still way too skinny.

My body decided to reject all other foods and now I sensitive/allergic to sulphur, oxalate, phytates, histamines, am only able to eat five foods without an extreme response of fever, chills, total insomnia constipation etc. My face flushes severe when I eat any food at all and I feel flushed, and feverish with body chills and freezing cold feet.

I react strongly and poorly to even the tiniest amount of any supplement, which I realize now is just very likely because of paradox and my body is in desperate need of nutrients.

I suspected MCAS and EDS, and my functional psychiatrist/physician concurs with my analysis. I was initially elated to finally have even an informal diagnosis, and almost instantly deflated when I learned there is no treatment.

Was It Thiamine Deficiency All Along?

So it was then that I stumbled upon the video that Elliot Overton made with a woman who has EDS and has resolved her symptoms through carnivore and a thiamine protocol.

And then I found this website 🙂

I suspected I would have a strong Paradox.

I started with only a third of a capsule of a B complex.

This small dose put me into a suicidal depression unlike anything I’ve ever experienced before. I am thankful that for some serendipitous reason my husband was attached to the hip with me that week or I would have, without a second thought, walked to the train tracks and laid across them.

On the 6th day the suicidal urge lifted and I stayed with a third of a capsule of B complex and added 50 mg TTFD.

My sleep apnea stopped, but I am now in my 7th Day of vertigo.

I have experienced positional vertigo before where if I move from lying down to sitting or standing up the world spins for a few moments. This vertigo is completely different and it is washing over me almost continuously irrespective of being completely still.

I am thankful that I understand the paradox now and I am going to power through this with complete dedication in desperate hope that I have finally found an answer to a lifetime of pain, struggle, and bone crushing fatigue.

I am astounded and so grateful to Drs. Marrs and Lonsdale for all the time, knowledge, dedication, energy and yes, love, that they have poured into this site.

I imagine that I am not the only one for whom this work might be the final stop between life and death. Because of Drs. Marrs and Lonsdale and this website, I am experiencing HOPE, and that is no small thing.

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Healing Our Daughter, Healing Ourselves

by Joanna

Published on September 21, 2023

8600 views

Healing our daughter with thiamine and vitamin K2

Our Little Tadpole

Abby is our little tadpole. Sensitive to seemingly everything, she morphed into something she should never have been. Many people openly stare quietly, thankful their kids aren’t like her and go about their business without much thought. Or worse were those who only stood by saying “God, somebody DO something!” when our daughter was screaming in pain in public as if WE weren’t there. There is much to be learned from them, if we only had eyes to see. We’ve made mistakes in our journey with our daughter, but the 10 specialists we’ve taken her to in the last nine years have provided numerous test results with little to no answers. The last allergist I took her and told me to “stay off the internet” as he was handing me free pharmaceutical samples as I was walking out the door. They made it as far as the trash can in the restroom. And so began our journey of doing something different, looking for answers outside of what we’ve been told. In our journey to heal our youngest daughter, we are healing ourselves too as we all seem to be dealing with very similar issues of low stomach acid, connective tissue dysfunction, and nutritional deficiencies/dependencies. I will start with her story first, since it is because of her that we’re figuring ourselves out.

The Early Red Flags: Hypermobility, Digestive Issues, Speech Problems and Intense Reactivity

Abby was adopted from China in September 2010 at the age of 10 months. Her birth and family history is unknown. She was found in a very poor district at three weeks old, underweight and jaundiced. She also had a congenital heart defect called atrial septal defect, which later closed up on its own. She was kept in ICU for a period of time. She was bottle fed until 10 months, then introduced to gluten and dairy. Orphanage caregivers reported she had a much heartier appetite than other babies (an early red flag that we all missed).

When we adopted her, we found her to be a very happy and social baby, who transitioned well. Her eye contact was always good. We did notice, however, her hips, elbows, knees, and fingers were hypermobile. In hindsight, we recognized that she played differently with infant toys. More red flags.

In October of 2010, she had her first post-adoption doctor’s appointment.
In December 2010, she was walking on her own. She tested positive for TB exposure and put on Isonaizid. She tested negative for lead. She became ill and was in pain for 10 days with diarrhea 3x day. We switched to Rifampin for the next 6 months. She was on Isonaizid and/or Rifampin from December 2010 through July 2011. Anti-tuberculosis antibiotics required monthly liver checks. She was vaccinated during this time as well, a mistake we came to regret. Our once happy child now became stoic and would remain so for nearly a year, but things had changed.
In spring of 2011, she experienced continuous and severe congestion along with loose stools.
In July we stopped Rifampin. She was a good eater, often ravenous.
In spring of 2012 we began speech therapy, 3x per week, but progress was slow. After removing gluten she spoke her first three word sentence.
July 2012 her hearing was checked. “Possibly mild frequency decrements. Minor issues”.
July 2013, probiotics stopped her diarrhea, unless she was exposed to a problematic food.
In 2014, we found she was a MTHFR 677ct double mutation. We strongly suspect she has a CBS mutation due to very strong reactions to various things: ALA, NAC, Epsom salts, CLO, methylated B12/Folate. Though over time, some of these we have been able to get in her in small amounts.
Over the next few years, and a multitude of negative tests, all we were able to determine was that her B12 levels were consistently high, even when not supplementing much, as were her B6 levels (though iodine brought her B6 levels down into the normal range). Creatinine was low, and a few amino acids were only slightly elevated. Prostaglandin F2 were extremely high and liver enzymes were elevated.

Despite all of this, Abby is a very happy, socially engaged and intelligent girl. Her speech has always been intermittent, ranging from very slurred to full complete clear “normal” sentences. It switches at random. Her former teacher of 5 years doesn’t think it is ASD, but in truth, it doesn’t really matter. Our kids are often labeled for the convenience of others.

Altered Pain Sensitivity

Abby appears to have a high pain threshold, except stomach pain. Since she was young, she has preferred to be barefoot and wore few clothes, even in winter. Over time this has changed and she has grown more “normal” in her body’s adjustment to temperatures.

The only observable nervous system affect was that she tightens/clenches her fingers when very excited. Excitement seems to trigger degranulation in her unstable mast cells. She had been extremely reluctant to draw, write, or color when young. She’s doing all this now, not as age-appropriate, but gaining.

She has had many problems with probiotics in the past; often creating an immediate OCD/stuffing whatever she could get her hands on behavior, under furniture, peeling birch tree bark for hours, etc. Her brain was almost immediately affected.

Severe Reactions to Triggering Substances

Trying to solve her medical problems has been difficult. She has had so many reactions in the past when trying various vitamins/minerals and supplements recommended by her physicians. The results were always mixed and reactions could be extreme. We often, and still do, dose her vitamins and minerals separately, mixed together. Many reactions were not to the main ingredient, but to the binders or fillers added to the supplement. Some treatments would spur a short snippet of normal speech but only 1-2x then nothing more.

Below are the symptoms that we have been navigating.

Dry, itchy skin. Rashes, hives, angioedema, large welts from some foods/chemicals and insect bites. Her skin feels like it’s on fire and she tore at her clothing after a small amount of Pure Vegetable Glycerin (99.9% pure) was applied. In 2015, her skin peeled off her arm, wrist to shoulder in a 3” wide band of deeply reddened dry/cracked skin, after eating non-organic strawberries. It looked like a third-degree burn, minus the blisters. Epsom salts, baking soda, Vick’s Vapor Rub, various other skin oils like jojoba, or almond oil, all caused painful reactions.
Severe abdominal pain. She experiences severe abdominal distress and pain after ingestion of various foods or charcoal-grilled food. She may also develop constipation/diarrhea, headaches/migraines. Probiotics often dramatically changed her behavior within an hour to severe OCD. Fruit-based digestive enzymes would cause facial rashes and behavior changes. Pancreatic enzymes caused much less speech, very quiet per her teachers.
Urinary. She was unable to urinate 9+ hours after ingesting cough syrup on two occasions. She was not dehydrated either time. She formerly had urinary incontinence on occasions and enuresis. The enuresis resolved with the addition of vitamin K2 MK7.
Insomnia. Occasionally she would develop insomnia, often after ingesting or exposure to an offending food or chemical. Tap water seems to be particularly problematic.
Behavioral. She has experienced severe OCD, irritability, extreme aggression/anger, hyperactivity.
Heart and Lungs. She develops a rapid heartbeat at rest and persistent coughing for 6+ hours following ingestion of a trigger.
Head and nose. Congestion, puffiness/eyes, headaches/migraines (based on focused tearing behavior).
Speech Problems. Her ability to speak various greatly relative to exposures. It goes from single words to full clear “normal” sentences. With gummy vitamins, recommended by her doctor, she developed a very notable and immediate regression in speech when she was four years old. The day before she took the vitamins, she had clearly-spoken emerging speech, i.e., “I eat” “I do” “I wash”. Immediately after giving her the vitamins, she walked about the entire day just saying “mmmmmm” over and over. Unsure of the cause, I was thinking dyes, rancid hydrogenated oil, or some such. I would not make the sugar connection for a few more years.
Severe pain after exposures. She had a strong reaction to Cassia cinnamon. In class, she and other children were making Christmas ornaments with lots of Cassia cinnamon. Although none was ingested, her teacher said she was inhaling it and handling it for hours. Near pickup time, the teacher said she was not feeling well, began to be irritable, like her head hurt. As we were walking out of the building, she went down fast onto the ground and began writhing in pain (not sure if head or gut related). Teacher held her head to keep her from hitting it on the pavement, while I ran to get my Lavender essential oil rollerball. Applied it, and within a few minutes she was fine and got into the car. No further incident. Ceylon cinnamon causes no problems. Cassia can affect B1 levels, or so I read.

Our Journey to Healing Began With Vitamin K and Thiamine

In October 2018, we learned about thiamine and suspected that many of her problems may have been the results of a longstanding thiamine deficiency. We began in August slowly increasing Thiamine HCL. She began to improve at school, but results were inconsistent. We then moved to Benfotiamine for a while and results seemed better, but still inconsistent. By October, she was taking Sulbutiamine and we worked our way up slowly to 200 mg. Organic Acid Test (Great Plains) showed her lactic acid levels came down with the addition of the high dose of thiamine.

Nighttime enuresis persisted several years beyond toilet training. In 2016, we added approximately 700 mcg of vitamin K (MK7) working up slowly to this dose and her nighttime accidents completely stopped. The addition of vitamin K (MK4), reduced her food intolerances and allowed her to eat a broader diet, but that form of the vitamin did not stop the enuresis, the MK7 form did. We have since lowered her doses and now she just takes a D3/K2 liquid form with no return of the enuresis and food tolerances seem good, though we monitor her diet closely.

We use a variety of homeopathic remedies to treat reactions, illnesses, and injuries and reduce chemical exposures at home. Once her lactic acid levels came down into the normal range with the thiamine, we were able to add probiotics without negative reactions.

Her diet is mostly organic, grass-fed beef, organic chicken, wild-caught fish, cage-free eggs, local raw honey, coconut and olive oil, ghee, no GMOs. MTHFR mutations seems to be sensitive to gluten and dairy, but I wonder if that’s because of our need for the TTFD form of thiamine. She has been sugar free since July 2018.

My Big Takeaway: Healing Requires Resolving Nutrient Deficiencies Dependencies

EDS and ASD both share very similar nutritional deficiencies and/or dependencies. I wonder how much of autism isn’t simply the undiagnosed trio of EDS/MCAD/POTS. As most genetic testing is beyond the reach of most family budgets, it is difficult to know. It seems like it would be worth looking into one’s broad family history. A friend once told me that the foods we crave the most can be our biggest problems.

Years ago when Abby was in preschool, her teacher had me in for a conference. She showed me her notebook, which sadly only had a few scribbly lines in it. She slowly closed the book and moved it to one side. She looked me straight in the eyes and said “this isn’t autism”. Her son was on the spectrum. She said “Abby is smart, very, very smart. I think she’s gifted”. I looked at her dumbfounded, asking “then why?”. She said, “I don’t know what’s going on, but she knows… she knows!” She proceeded to tell me something Abby did that proved to her unquestioningly her assessment. Giftedness and learning disabilities seem to share many commonalities.

We sort of figured some things out in reverse. For example, the MK4 form of vitamin K2 allowed for more food tolerances, and the MK7 stopped her enuresis. Bacteria in the gut (bacillus subtilus) produces K2, but then too much lactic acid was a problem because her thiamine was low and the CBS mutation seeming caused trouble as well. K2 seems to be very important in the distribution of calcium in the body.

We often see admonitions to heal the gut on the internet; so many opinions and recommendations. As Abby’s case suggests, it is far more complicated than simply taking a probiotic. It is also highly individual. Our daughter’s journey may not be applicable to someone else, but perhaps something can be gleaned.

We continue to avoid triggers, eat and live clean, heal the gut, use holistic remedies, play and laugh a lot. Thankfully, her reactions are now infrequent and fairly mild, but it was long road to get to this point. Her appetite is now normal with no real cravings or hunger extremes. We use vitamins/minerals, fish oil, and probiotics less cautiously now. She is gaining speech rapidly. She may still not be typical, but she is a far cry from what she had morphed into and much more normal than even a year ago.

We’ve been fortunate to avoid prescription drugs overall and use natural remedies, diet, and vitamins and minerals to affect change. We are avoiding further vaccinations, as our belief is her body has had enough and can’t deal with the stress at this time. Overall many people’s demeanor changes rapidly when mentioning alternative approaches to western medicine. If outside the norm, we may even be deemed a quack, but since we’ve been able to heal various family members of numerous ailments, if we’re seen as strange, so be it. We can heal our bodies, probably not 100%, but often without prescription drugs.

Perhaps even the most complicated puzzles among us are not as hard to put together after all. We are still healing and our journey is not over. We tell ourselves and our kids to eat less junk because a nutrient-dense diet is helpful to everyone, but it seems that it is even more vital to those who suffer both the blessings and curses of a good brain.

Our brightest lights are ever so vulnerable.

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 published originally on August 19, 2020.

Atomic Imprint: A Legacy of Chronic Illness

by Genie

Published on May 18, 2023

8094 views

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.

Thiamine, Vaccines, and Heavy Periods

by NB

Published on April 5, 2023

8699 views

Life Long Health Issues

I am one of life’s medical mysteries, although it is not at all mysterious when it is all broken down. I became sick at 37 after an unprotected mercury filling removal. I developed jaundice, my stomach fell apart, and I looked and felt grim. Every morning I woke up feeling like I had flu. I had no energy. I saw a few doctors that did blood tests. The labs showed I had elevated bilirubin and I was diagnosed with Gilbert’s Syndrome. It was considered symptomless though. I was also hypothyroid and prescribed Levothyroxine. Otherwise, I was just sent on my way.

Long story short, I removed the remaining mercury fillings safely and went through a chelation protocol. I was put on hydrocortisone for adrenal insufficiency and I developed POTS and gastroparesis. This left me pretty much housebound. After seeing a hormone specialist and a cardiologist, I slowly regained some ground and had a few good years until perimenopause. I spent many years searching on the internet about the causes of my chronic fatigue. After one too many horrible consultations with a doctor and given my family history, I self-diagnosed MTHFR, mild EDS, histamine intolerance, an underperforming gallbladder, and dysfunctional Sphincter of Oddi. This was in addition to the POTS diagnosis and B12 deficiency. It was overwhelming.

Since the beginning of my illness, I have been taking many vitamins and supplements and made real progress on some symptoms. Here, I found B vitamins to be key. I have been taking them separately, some at high doses. I have been taking thiamine in the forms of benfotiamine and TTFD, as well as B2, B3, B6, B9, and B12 along with various co-factors including zinc, magnesium, iodine, potassium, and selenium daily for a couple of years now. In terms of energy, folate and B12 were biggies, the addition of B2 did not seem a gamechanger but it was necessary, and thiamine gave me the biggest energy lift of all. It was like night and day.

I crawled all over hormonesmatter.com to read case studies of people whose POTS had improved with thiamine, and worked my way up to a high dose of 900 mg of benfotiamine, or 300mg TTFD. I had some paradox early on, but was ready with the potassium, having learned THAT lesson with B12. To be honest, the paradox wasn’t as bad as I expected.

Perimenopause

And then I pitched into perimenopause. Falling hormone levels uncovered a host of other symptoms, and so I fell headlong into histamine intolerance, leaving me with five foods I could safely eat. I became very thin and had no appetite. My POTS got worse and was especially noticeable with falling estrogen. My feet became cold and numb and anxiety went through the roof. The Sphincter of Oddi problems became daily instead of sporadic. My gallbladder had to come out. I was put on HRT and I daresay things would have been worse without it, but it was still pretty bad with it.

Covid Vaccine and Menstrual Flooding

With Covid-19 and the need for vaccines, I worried I would once again lose my health. Having read on hormonesmatter.com about a young woman who had had the HPV vaccine, and developed POTS, salt-wasting, and hypersomnia, I was nervous about what a vaccine would do to all my medical issues. Luckily, because of her experience, I was aware of what could happen to a human body after vaccination and was prepared.

So when I was invited to make an appointment for the first vaccine, I didn’t think twice. I was pretty scared of Covid. I had the jab, and 5 weeks later the second. A sore arm and a headache were the worst side effects, and they were gone the next day. Just a reminder that for years before the vaccine, during the vaccination period, and after, I had continued my daily regimen of vitamins, including high-dose thiamine, as well as magnesium and potassium every day. I thought I had covered all bases against any vaccine side-effects.

A few months after the second vaccination, I had a very heavy period, unlike anything I had ever had before, with flooding and not being able to leave the house for a day. My thought then was, well, ‘perimenopause’ and ‘last hurrah’. About 6 weeks later I had another very heavy period, worse than the previous one, with the heavy bleeding going on for at least 3 days.

A Hypothesis

After my booster, a blood test that I had around that time showed that my potassium, which had been around 5, had dropped down to 3.5, which is where it had been when I began taking thiamine. My ferritin had also dropped from 50 to 30. I was feeling incredibly fatigued and breathless when I walked and needed to sleep every day.

Seeing my blood results, the low potassium in particular, made me wonder what had happened to make it drop so quickly. By then I was also getting irregular heartbeats. I realized I needed to take a higher dose of potassium, and then I remembered the case of the woman who had become ill after the HPV vaccine. I wondered if the vaccination had wiped out my thiamine, despite already being on a high dose, and so I increased it, taking 1.5 grams of thiamine HCL the first day. I took thiamine HCL because it was lying around, it came in a 500mg dose, and I hadn’t tried it before.

By the end of the day, I realized I was in paradox, my heart was racing, and I needed potassium to slow it down. The next day I took the same amount and was fine. The day after I upped it to 2 grams, and had the heart racing again. The other day I took 2.5 grams and again had heart racing. My energy has gone through the roof, the breathlessness has gone, and my brain feels sharp and alert, although it is not constant.

My hypothesis is that despite taking high dose thiamine, the vaccinations put me back into a deficient state, and many of my old symptoms came back. After reading medical studies on the relation between thiamine and estrogen, I learned that thiamine and riboflavin are required to deactivate estradiol in the liver. I believe this function was knocked out by the vaccines, and estradiol was able to build up to give me these two very heavy periods, which were completely out of the ordinary for me.

I have read that many women reported heavy bleeding after the vaccines, and some menopausal women got their periods back around the time of vaccination.

I merely pass this on as a plausible attempt to join up the dots – the heavy periods, the low potassium, the severe fatigue, and the vaccines – and this at what is already considered high dose thiamine. My conclusion is that if you have been very deficient for a long time like me, and had the vaccinations, it could take a very high dose of thiamine to restore what the vaccine may have wiped out.

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 February 28, 2022.

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.

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 published first on August 31, 2020.

Celebrating a Diagnosis of Chronic Illness? You Bet.

by Debra Anderson

Published on April 4, 2019

3517 views

I’m Celebrating Today, but not for the Reason You Would Think

Today is a day of celebration for me! However, my celebration is probably not one that someone would consider a reason to celebrate. You see I have spent years and years being ill, matter of fact looking back to my childhood, I can honestly say that I was never a healthy person. I was always suffering with one painful area after another. Then when I hit my early twenties my health began to spiral out of control. At first it was a slow progression, but with each passing decade the destructive progression of whatever this was began to speed up. I continued to fight like hell to push through whatever this was that was happening to my body. I spent countless hours crying in pain and more trips to the ER for help then I can even count. The doctors would run one test after another on me and find nothing other than inflammation of unknown origin.

As the years went by, I would find myself traveling the country searching out one specialist after another. Many would take a guess as to what was happening to my body and then some would tell me that it was all in my head and show me the door, while others would then label me with one autoimmune disease after another. Each autoimmune disease was based on whatever area of my body was inflamed at the moment. If my skin was inflamed they would label me with psoriasis. If the joints were inflamed I would get labeled with some form of arthritis like Lupus or RA. If it was my stomach or colon I would get labeled with Crohn’s disease and on and on it would go. By the time I hit my forties, I had truly become the queen diseases, yet no one really knew with any certainty what was wrong with me. During these years I would try one drug after another to help quell the progression and ease my suffering but most did very little and many caused more problems.

The First Clue: Ehlers Danlos Syndrome

A breakthrough would come in 2007 when I would be genetically diagnosed with several forms of EDS (Ehlers Danlos Syndrome). This would lead to several answers for many of my problems, such as Dysautonomia, Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, etc.. However, it still did not account for the systemic inflammation, the deterioration that was now being seen in imaging or through other testing. It also did not account for the level of suffering and pain I was dealing with. On top of this there really wasn’t any treatment for EDS or the sub-illnesses it had caused. It would be at this point that my doctors and I would turn to just trying to treat my symptoms as they arose. This included pain pills, anti-seizure meds, stomach meds, etc.. Most of these treatments did very little other than to lessen the pain, but because the inflammation was still raging in my body like an all-out war, I continued to experience further disabilities due to destruction of joints and organs. My life had become a living hell to say the least!

Fluoroquinolone Toxicity Syndrome and Lyme: A Wonderful Combination

By 2011, after another bout with diarrhea, I was once again given another dose of Cipro, only this time combined with my prednisone. This would set off a severe reaction within my body known as Fluoroquinolone Toxicity syndrome. This reaction coupled with my EDS (which is a collagen depleting syndrome), would leave me bedridden for years. I would once again try like hell to fight my way back to some kind of normalcy. I finally had reached a point of being able to get up and take care of myself and began to be able to walk again. Now this is not to say that all my previous problems, pain and disabilities had also gotten better because they had not. As a matter of fact, they had continued to progress. However, I tried to adapt to my abilities, body and life and in celebration of being up and out again. We decided to take a trip to Tennessee. It would be this trip that would once again, throw my life into a turmoil. You see I had been bitten by a tick; one that was carrying a whole host of infections, which it so kindly infected me with.

For the next 8 years, I would aggressively attack all the tick infections I had been positively diagnosed with. It was a long arduous battle that kept me very ill and quite often bedridden again. Then just as it seemed that I was turning a corner with beating these infections, I would go into another “flare”, sending me reeling and back to my bed once again. My abilities and life had forever changed and not to the betterment either. Many nights, as I lied in my bed crying softly to myself, I would wonder if I would ever know a moments peace again. During some of those nights I would literally fantasize about dying and think how glorious it would be to be out of pain once and for all, but not having lived my life to the fullest yet, I would pull myself back from the brink of swallowing a whole bottle of pain killers.

The tick infections would go on for so long that I had lost the sense of who I was and who I once was. I had reached this point in my mind of thinking that if I could just get back to when I was younger, my life would be so much easier, because after all I had been healthy back then, right?! This somehow had become a false fantasy that I had placed in my mind, maybe because my health had become so bad that looking back on my youth made it seem as though I had been truly healthy, but in truth that was not the case. It would take going into cognitive behavioral therapy for me to look back on who I was and how unhealthy I really had been. This would be the dawning moment for me!

Ill Since Childhood

Once I had realized that my health had been going downhill literally from the moment I took my first breathe of life, I quickly realized that everything I was going through and had been through since taking that fatal dose of Cipro was not the end all to my health problems. This included the love kiss I also received from that fateful tick in Tennessee. No, my health problems dated far back into my earlier years and even after the diagnosis of EDS, there was still a sense of something more sinister still taking place within my body. It was something that no doctors had yet been able to place their fingers on, but it was something that was eating my body one cell at a time and leaving me in total and utter grief.

It would be then that I would begin to wake up and question the tick infections as still being viable within my body. I mean after all I had spent seven of the eight years saturating every cell and nook and cranny of my body with every kind of antibiotic, anti-fungal and anti-parasitic drug out there and this was not to mention the numerous alternative therapies. How could these infections still be so alive within me? How?! At this point I would sit down with my doctors one by one and go through my life, chapter by chapter, from one illness and label to another. I would question them on everything they knew and then some. In the end, they too would come to the same conclusion as me, this could no longer just be Lyme and company. No, there had to still be some sinister force lurking within my body; the same damn one that had showed up days after I took my first breathe of air and one that was continuing its ugly assault on my body, with no mercy!

The quest began, I was determined to find this beast and put a name to it. I made a promise to myself that I would not die without first being able to look this beast in the face and name it. I was going to find him within me and level this playing field once and for all! So, I began pouring through every medical book and journal out there. I was so intent on finding the answer that I literally kept a journal of every disease that had any possibility of being my monster. I came close to fitting hundreds of different diseases, but with the help of my doctors we were able to narrow it down to just a few. Once we had settled on a few, we began looking for any kind of definitive testing available for them. Thank God science has been moving at the speed of lightening over the past decade because they made our quest for diagnosing many of these diseases as easy as a DNA blood test. I would drag my ailing body into my doctor’s office week after week, throwing down one more disease to test for, but as each came back negative my hope for an answer slowly, but surely, diminished. It was as if someone had slowly let the air out of my birthday balloon and it left me as deflated as that balloon on the floor. Thank God my doctors were as curious as I was for an answer because they kept giving me encouraging words and propping me up when I thought the quest for the Holy Grail was over.

The last test, the very last test that we thought I might have was done and when it came back negative too, I collapsed on the floor, sobbing as if someone had stolen my new puppy. I cried for days on end, setting off my mast cell so bad that my face had swollen to a nearly unrecognizable state. I had been beaten and defeated and as I laid in my bed envying the people in the obituary columns. I began to think maybe this was still Lyme. What would it hurt to go back and try antibiotics once again? So, I set up an appointment with a new Lyme doctor and set off to see him. This doctor sat there listening to the story of my journey with wide eyes open and as my story continued I could see his facial expression go from “I think I can help you” to “I’m not going to be able to help you”. As I finished my story, this kind man sat back and explained to me that I still may have Lyme, but that there was something more at play here, maybe it was the EDS and all the sub-illnesses it causes, or maybe it was the floxing from the Cipro, or maybe it was this dark lurking beast that no one could pin down, but in any case, he was not sure that more antibiotics were going to bring me any further than I had already come. However, he was more than willing to administer them, but warned me that they would make me very ill again, worse then what I already was, and once I recovered, I would more than likely be right back to my baseline; the same baseline I was at sitting in front of him that day. Now, I thought for sure that I was going to fall on the floor and begin balling like a baby, but after a moment of thought, I realized this man just gave me the vindication that this more than likely was no longer Lyme and company, so there still had to be some sinister force lurking within me. So, I told the doctor to please run every Lyme and company test on me again, and while I waited for the results, I would go home and think about re-entering the world of antibiotics and Lyme.

Time to Regroup

I went home that night not as upset as I thought I would be and called my regular team of doctors. I told them what the new Lyme doctor had said and explained the route we were going to take with the tests and my thinking about treatment again, although my mind was already pretty much leaning toward not going down this road again. My team of doctors were thankfully on the same page as me and were quite supportive in whatever my decision was to be and in helping out in any way they could. Over the next few days, I would sit in complete silence going over every chapter of my life, page by needless page. I would recount every conversation with every doctor I had seen and mull over every test that had ever been done on me. Then it was as if a light bulb had gone off in my head. No, actually it was more like the finale to a great fireworks show on the fourth of July that burst from my brain! I quickly grabbed my notes and poured through them, I knew what was going on for the first time, it was all coming to light, the beast was being exposed and I had him cornered!

You see, I vaguely remembered a rheumatology appointment that I had had shortly after being diagnosed with IBD. The rheumatologist who I had been working with for over a decade had brought up this disease, but because he had given me so many labels of autoimmune diseases over the years, all of which I would now find out went along with this illness, that I took what he had said with a grain of salt and then threw it out like the baby with the bath water. Instead, I went back to my GI doctor who had just diagnosed me with IBD and felt this is where I needed to focus my attention and just maybe if we conquered this illness the rest would just fall into place. I never did go back to the rheumatologist and soon after that appointment, I would also be diagnosed with Lyme disease, a disease that could account for all my inflammation. This then quickly put the rheumatologist’s theory of a new diagnosis out of mind. I thought between the IBD diagnosis and the Lyme disease that I had finally found my holy grail and all would be well soon. Unfortunately, at that point in time it never dawned on me that my long standing systemic inflammation had started long before the tick bite and even the IBD diagnosis. Now, I don’t know if I just wanted it to be this easy (not that treating either of these illnesses was an easy walk through the park, but compared to what I had been through already it seemed like this was going to go smoothly from here on out) or if I just wanted to live in a state of denial and pray like hell that this was all there was. If I had only had a crystal ball way back when, so as to see that nearly a decade later I would still be suffering terribly, dealing with more body wide destruction and once again searching out the horrible beast that would still be lurking inside me. Maybe then I would not have thrown the baby out with the bath water, but instead took each new finding as being one step closer on my journey to meeting the beast face to face.

Eureka Moment

So, coupled with this vague memory and some new found information, I set out to look up the diagnostic criteria for the disease that I was sure this time was it. I sat there reading it line by line checking off each criteria I had met, and by the time I had reached the last point of criteria I realized that I had checked off every box! I looked up from my computer, while sitting there on my bed and felt as though the heavens had opened up and the sun’s rays came shining down on me, all I needed now was a chorus of angelic singers to fill the room, like you see in some religious kind of movie where God opens the heavens down on to you and delivers the miracle you had so desperately prayed for!

Now as elated as I was, I knew I had to get my ducks in a row before once again bringing another disease to my doctors. So, I looked up the overview of the disease along with the symptomology, as well as any other testing needed to determine if someone had this illness. There was my choir of angelic singers, every note on the page poured out my life’s story of existence. Starting from the very early days of symptoms to the progression of the illness throughout my young adult life, to where I was at now. Not only could I see myself within these symptoms but also other family members, many who like me were in search for the mysterious beast lurking within themselves too. I would go on to see the sub-illnesses often associated with this disease and again like pages in the novel of my life there was each disease one after the other laid out in the succession I had so exhaustedly exhibited. Finally, the diagnostic criteria used in determining this illness would go on to show the systemic body wide destruction this beast would cause over a life time, the same destruction imaged and seen so often in my own health records. With all this knowledge now in hand you would think I would run off to the phone to call my team of doctors, but before releasing the congratulatory balloons, there was one more thing for me to check. I needed to know if and how this disease was related to EDS. So, I looked it up and there in plain sight was my answer, it was one of several sub-illnesses often seen alongside of EDS. Once again it was stated that people with EDS often suffer with this illness and as of yet like so many of the other sub-illnesses associated with EDS, there was no known reason or verifiable scientific connection as to why. Well, I had all I needed now, so it was time to let the team in on this one.

The Diagnosis: Ankylosing Spondylitis

I tried to stay calm as I called and messaged each doctor. I went through each bullet point I had made in my notes and then brought up the prior raising of this illness many, many years ago now. I laid out my case, like an eager new lawyer, I presented all the evidentiary evidence that had been collected over thirty years of living with this illness. I was precise and on point, I was ready for any of their questions, yeah I was in this to fight like a lawyer who was trying to save their client from the electric chair! When I finished pleading my case, I sat there in silence as each of my doctors took the information in and then there it was, those glorious words “OMG! You hit the nail on the head” They had never thought of this diagnosis and were unaware that a rheumatologist so many years ago had hit on this disease. Each of them had some vague knowledge of the disease and some had even treated other patients with it, but none had thought about applying it to me, mostly because I came to them without the diagnosis and my symptoms seemed to manifest over decades, leaving everyone bewildered. Once they had heard me plead my case point by point right down to this last flare which once again encompassed a part of my spine they knew I had hit the right diagnosis. I would then go in and get formally diagnosed. A week later the choir was singing my praises as the heavens opened to shine down on me. I was officially diagnosed with this disease. Okay it was time to tell the family and throw the celebratory party, you know the one that screams with pure joy “That I have a progressive inflammatory disease and it has a name, it’s called Ankylosing Spondylitis!!!!”

I had found the beast, I had finally seen his face and from here on out we were going to be on an equal playing field. I know to most people finding out that you have an awful progressive disease that is going to limit your abilities and turn your world, your hopes and dreams upside down and inside out, would be devastating to say the least, but for someone who has been chronically ill for years on end, it came as a sweet relief. You see chronically ill people live somewhere in between getting sick and death. What I mean by this is that we are all taught from an early age that if you get sick you just simply go to the doctor, who then runs his tests and diagnosis’s you. You then get a prescription which you take and within a few days to a week you are back up and rejoining the living world. Or we are taught that you get sick and you go to the doctor who then runs his tests and with sadness in his voice he explains to you that you have some awful deadly disease, which in turn you go home to prepare for your death. However, there is this place in between that getting sick and death and that place is known as chronic illness. It is a place where you go when your illness decides to never leave. It is place of fear, isolation, and loss of job, finances and quite often even family. It is also a place where patients often find themselves being abused at the hands of the very people who are supposed to be helping them find their way back to health: the doctors!

You see for most doctors, they are taught that if you cannot see the beast within the blood work or on imaging, then the beast does not exist. In cases like this, the doctors then turn on their patients and quite often blame the victim for their own suffering. The worst part is that in 2019 we know enough about autoimmune diseases and genetic defects to know that many if not most diseases can often take years to decades to fully present themselves and in the meantime, the patient can go on to suffer the low level of inflammation that is still not able to be detected through our archaic testing. Yet instead of working with the patient, however long that may take, most doctors show the patient the door and blame them for their own suffering. The world of chronic illness is like the black hole where frightened ill people get sucked into against their will, to never be seen as human beings and a part of society again.

Being Chronically Ill

The unfortunate fallacy propagated by the healthy and even some doctors is that the chronically ill are lazy, they just don’t want to work or they like the attention and so on and so on. Well, I can tell you that anyone who is chronically ill works harder on a daily basis then even the hardest working healthy people. You see we work hard at “faking it” for the healthy so they will believe us and not leave us. We work hard at trying to manage our finances so as to be able to afford our multiple doctor appointments and medications. We work hard at searching for that one doctor, the one who will finally draw the beast out of us and name it and work even harder at convincing a doctor that we truly are sick and in pain. We work hard at doing daily necessities like showering and shopping, things most people do without a second thought, but for us it can leave us wiped out only to pay for days on end. We work hard to keep hope, so that one day we will find the answer and slay the beast, because if we didn’t work hard at this we would have ended our life after the first doctor showed us the door! We spend countless hours with doctor Google, praying we get lucky and hit the mystery medical jack pot! On top of all this many must still care for their children, while facing family ridicule for not getting well. We live through guilt and shame and fear and ostracization from society as a whole. Many are accused of being mentally ill and for many of us, myself included, spend countless hours questioning our own sanity. We are accused by doctors, family and friends alike of being attention seeking, malingering, or suffering from somatization disorder, or worse yet drug seekers! Yet none of this could be farther from the truth. We, just like anyone else, want nothing more than to get better and return to our healthy lives or at the very least have the beast named so we can set out a plan of attack to assault the beast who has raged this war within our bodies. We don’t want to spend one more minute in pain, we don’t want to see one more crass rude doctor and God knows we do not want to swallow one more pill or supplement that leaves us with awful side effects, no we want to be like you, healthy and full of hope and joy for the future, only this time with a new found compassion for those who are fighting a silent beast within!

So, yes after years of being ill, after years of being tormented by our bodies, our doctors, our family and friends and after years of losing everything we have come to cherish in life, when that elusive miracle of facing the beast actually happens and we have found our Holy Grail, we rise to our feet and do the happy dance, we shout from the roof tops that we are “really” ill and no matter what the diagnosis is or what the prognosis of the disease is we are ready to celebrate and celebrate hard! For no matter what the diagnosis brings in the future, it surely cannot be as bad as the journey itself was to finding the beast. We once again find a new kind of strength, only this time we are not fighting ourselves, the doctors or the ones around us, but instead we are finally fighting the beast and we do it with a glorious smile on our faces and little spunk in our steps! So, today I am celebrating my disease, Ankylosing Spondylitis, matter of fact I think I will even get some balloons and a cake, do you think they can write on the cake “Congratulations on your progressive disease!” LOL!

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Living with Ehlers Danlos is Hell

by Debra Anderson

Published on August 28, 2014

13046 views

I have Ehlers Danlos. On top that disease, I was given fluoroquinolone antibiotics and suffered a severe reaction which then lead to a rare and deadly fungal infection called Glabrata. This is what I have lived through over the three years.

Ehlers Danlos

Ehlers Danlos Syndrome (EDS) are genetic mutations that cause a lack of several types of collagen found throughout the body (skin, muscle, tendons, tissues, nerves and blood vessels). I have types I, II, & IV and crossover variations into several other forms. The type IV form that I have, also known as the vascular form, is a rare mutation form rarely ever seen (as of to date only three families including mine) and this is the most severe form that the NIH and John Hopkins has ever seen. This along with having more than one form (which is also extremely rare) has affected every part of my body and every system I have. It has left me with several other sub-illnesses, (some of them are common to all EDS sufferers and others not so common) such as hyperadrenergic dysautonomia, systemic mastocytosis, myalgic encephlamylitis (ME), pelvic congestion syndrome (PCS) and if God did not think he gave me enough to fight he threw in seronegative spondyloarthpathy with Crohns, which is seen in 35% of all female EDS patients. I also developed secondary Sjorgen’s Disease.

Ehlers Danlos plus Fluoroquinolones – Exploding Collagen

On top of all this crap I was given a fluoroquinolone drug by mistake, which is a collagen depleting drug!

After taking only four pills, my life turned upside down on a dime. I spent 64 days in the hospital fighting for my life, as my defective collagen exploded in every part of my body. Since then I have been fighting a daily battle of severe pain and organs and blood vessels that no longer know how or have the capabilities of functioning normally. It has now been almost three years since the fluoroquinolones and my body is still deteriorating. Fluoroquinolones, as all my floxy friends know, is a nuclear bomb that slowly kills through DNA adduction and mitochondrial destruction.

The fluoroquinolones have left me with no immune system to speak of, so I am constantly fighting one infection after another. Last year, I fought the hardest battle of my life with a rare drug resistant fungal infection known as Glabrata; leaving me to spend 120 plus days in the hospital plus five months of home nursing care and daily IV’s of poison that nearly wiped out my liver. While fighting the Glabrata infection, I was also fighting the Crohn’s, liver damage, fluoroquinolone symptoms, sublexes, dislocations of my ribs from my sternum and a host of organ, nerve and blood vessel issues.

Pelvic Congestion Syndrome with Ehlers Danlos

One of the most painful issues is the pelvic congestion syndrome (PCS). The easiest way to explain this awful part of vascular EDS is to think of varicose veins the legs; the kind that when the person stands the blood begins to pool in their legs, the veins bulge out like thick blue ropes and begin to swell. After standing for a short period of time these people begin to suffer horrific pain down their legs to the point that they have to sit and put their legs up because it feels like razor blades cutting through them. Well, pelvic congestion syndrome is the exact same thing only it is the blood vessels in your abdomen. It can be the major arteries or the smaller ones known as the feeder veins, the ones that feed your organs.

For some of us with Ehlers Danlos, PCS affects only one or two veins and for others, like me, it affects several or all. For me, it is the feeders and the major mesenteric artery that are damaged. Every time I am in an upright position for any length of time the blood vessels dilate and fill with blood. This puts pressure on my organs and all the nerves that surround them. So, I suffer from both organ inflammation and dysfunctional organs because of the Ehlers Danlos. I also have severe nerve pain that can only described as a screaming pain. It makes me want to jump out of my own skin and run. The pain is so bad, I want to run to the nearest ER and beg for someone to help or end my life.

Unfortunately, there is no way to fix this other than to take enough pain meds to knock me out for days. Life with Ehlers Danlos, and especially PCS, revolves around being drugged with the strongest pain meds on the market and only getting up to shower and then back to lying down flat again. It leaves me unable to walk. Many people with Ehlers Danlos are in wheelchairs, but even that has its time limits.

Ehlers Danlos Specialists – Good Luck

In an attempt to hold on, people with Ehlers Danlos reach out to other patients, looking for any help they can. We search out specialists around the country, always praying that we will find that one doctor that is going to have the miracle we need. Because this is such a rare illness and my form of it is particularly rare, there is no protocol or research to follow. We are all on our own. Every one of us with Ehlers Danlos, no matter where we live in the country, have at some point, seen the same handful of doctors and received the same response – ‘there is nothing we can do.’

My journey has lead me to specialists from Chicago to Washington DC to Michigan and to Mayo, both my doctors and I have consulted with doctors from the NIH, John Hopkins to UCLA, and of course, every one of them tells me the same thing: ‘You can’t fix this [the exploding veins]. If you try [surgery]you will surely cause more severe damage to the remaining blood vessels or the surrounding nerves, which could, and has in some who have attempted it, left them in what is known as intractable nerve pain that is not treatable.’

Surgery to Repair Veins and Arteries Damaged by Ehlers Danlos

For people with Ehlers Danlos, healing is difficult and complications to surgery are very real and dangerous; attempts to stint, remove, bypass or replace the veins only causes other veins to erupt. Surgery is a bit like a dog chasing his tail. I have seen these complications first hand in others who have tried these surgeries, but there are a few, a very few people, who have succeeded and healed.

I know the risks and have spent the last two years searching out a doctor willing to attempt to repair my veins. I have begged and pleaded him to try it on me. Surgery to fix the faulty veins is very risky. The 80% failure rate is 80% and the repeat rate, 100%, meaning additional surgeries. And yet, I am willing to pursue the surgery anyway. What else can I do? There are no other treatments. My one feeder vein, which should have the circumference of a piece of pencil lead, now has the circumference of a quarter and is only getting bigger by the month. It is a feeder vein to my lower colon and rectum and is no longer allowing the organ to function normally. The pain is beyond anything I can take, even on pain meds. It is going to blow at some point and I am not willing to go there or lose my organs, so after much consideration, and two years of working with a surgeon, we are going to go in after this vein and we’re going to clamp it off and bypass it.

This vein is embedded in not only feeder nerves to the colon and rectum, but also, a ganglion of autonomic nerves. This surgery is extremely risky. If any of these nerves are damaged in the process, I would suffer not only intractable nerve pain, but also, loss of control of the bowel or bowel paralysis. This could also happen to my bladder, which eventually may cause me to lose the colon and the rectum (or as we Cronnies like to call it a “Barbie butt”, which is where they remove it all, put a bag on your side and sew up your butt like a Barbie doll). On top of this, because of the autonomic nerves connect there; I could lose control over my heart rate, blood pressure and respiration. With all this being said, I’m willing to take my chances.

This surgery will leave me in severe pain for about 10 to 30 days. I will be bed ridden for those 30 days. This surgery will not get me off the pain meds but should reduce them dramatically. We’re only working on one vein right now; however, we may need to work on another.

Last Saturday, I woke up to filling the toilet with blood, a sign that something else has gone wrong. I took my pain meds, took my BP and heart rate and decided I was going to live. I went to the bathroom again, again later that day and this time I bleed out so bad that even after standing up I was still trickling blood and clots down my leg. It was off to the ER again. After several hours they could not figure out where it was coming from but my hemocrit was high enough that I did not need a transfusion, so I told them I was going home and did.

The bleeding had stopped as usual, but I called the doctor, and spent the day at Northwestern with my doctor trying to figure out which vein blew. We think it came from the kidney and that was a self-contained bleed; it busted open and then clotted itself off. This is not my first bleed. I am constantly in the hospital for bleeds. My doctor says I need to come in and STAY in the hospital. I looked at her and said, “I spent just over 200 days in the hospital in 2012 and over 120 in in 2013 and I’m somewhere around 50 plus this year, I’m not going in anymore unless I’m dying.” It is not that I am giving up the fight but I’m tired damn it! So, I’m living and letting God take care of the rest.

Living Chronically Ill with Ehlers Danlos: Children and Spouses

This is only one of the many things I live with daily from EDS. The saddest part of all of this is now watching my babies go through this journey. The heart break and guilt runs deep and not being able to save them from this hell, is hell itself. All we can do is to teach them how live with this horrible disease and be guinea pigs ourselves to help find ways to eventually treat them.

The men in our lives suffer right along with us. They feel helpless during our suffering. They have to pick up the household duties on top of working, and then there are the countless ER visits, the surgeries, the endless nights sleeping in chairs next to our beds in the ER, ICU or hospital, holding our hands and praying that we will get through this one too. They too have to deal with our screaming pain that many times leaves us unable to even hold a conversation. When we reach that screaming pain level, these poor spouses know it’s going to get ugly because it is all we can do to breathe. God help them if they even breathe too loudly because we are likely to snap the F@#k off and that’s when the crazy person comes out, the kind of crazy that even their mothers never warned them about because no one ever knew that level of crazy existed. They have learned the code words for it’s a really bad day, which means make sure I have a tall glass of water, my pain pill bottle and then leave me alone until I am either drugged enough or my body has adjusted to the pain level. My poor Tom not only deals with me but also my daughter who is now experiencing the pain and fatigue on levels that are leaving her to fight the crazy nasty pain devil that comes with this illness and that’s not to mention all the problems my boys have gone through because of this disease. God love these men and any faults they may have because they are angels to go through this.

Ehlers Danlos is a genetic disease that affects every part of our bodies, it affects every system and it disables us at every turn. There is no cure or treatment, there are few doctors who even know about this illness and even fewer that are willing to treat us. We actually get turned away as soon as they find out what we have. Our pain is so severe and incapacitating that most of the time there is not much that can be done other than to put us in the hospital and sedate us into oblivion! Those with the vascular form walk around with a cloud hanging over our heads not knowing when the next bleed is going to happen and whether it will be the one that finally takes us out.

I live with aneurisms in my brain, spinal cord and mesenteric artery. They will blow eventually just like the feeder veins. Some of us take palliative care, not that we are giving up the fight but because we hope they offer us something that helps. After being a hospice nurse for nearly 20 years, I could not do this. I walked out of the hospital and have chosen not to go there anytime soon. My head just cannot comprehend that yet.

Ehlers Danlos – We Look Normal

The worst part of this disease is that from the outside we look like everyone else, so no one can see our pain or what is happening to our bodies on the inside, so very few understand what our lives are like or what it takes for us to just get dressed. They can’t understand how different we are, only those that live with us, and unfortunately, our children who are now walking our path and the other EDS sufferers. It is also hard for some to not understand how one child in a family plagued with this illness can be so sick while another who has it too only suffers some minor problems or nothing until one of their arteries burst in the 5th decade of life. This is still being researched, the only thing they do know is that it is dominant gene and the mutation is true to the family, but the symptoms vary in degrees and systems from one person to another. It is a horrific disease that robs us of our lives and hides inside so others cannot see what we live with daily. At the bottom of this page I posted a pic from the National EDS foundations site to try and make people aware of what we look like on the inside, this is what EDS does to our bodies, organs, bones, nerves. If people could see what we really look like maybe then they could understand our pain, then maybe they would not criticize but instead praise us for continuing to fight, to get out of that bed, to continue to keep living despite the destruction! For me I continue to fight for my kids, I offer myself up for research, hell I’ll be a guinea pig like so many of us Ehlers Danlos sufferers. I will continue to get my ass knocked out by this disease but I refuse to stay down. No, I will get up and I will put a smile on my face I will laugh. I will go out and join the rest of the world, because that’s what we do!!

Postscript: Debra enters surgery today, August 28, 2014. We wish her well.

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