polypharmacy

The Lyme Spiral

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

Early History

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

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

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

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

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

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

Looking For a Zebra: Fatigue, Tachycardia, and Hypertension

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

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

And Then Came Covid

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

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

Medication-Induced Pancreatitis

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

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

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

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

Chronic Illness Limbo: Neither Disabled Nor Able Bodied

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

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

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

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The Catastrophic Effects of Polypharmacy and Medical Incompetence

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Polypharmacy and Iatrogenic Injury: More Common Than Recognized

My life should never have taken the catastrophic negative turns that it did. I am well educated, was a minivan driving soccer mom and a devoted wife. I enjoyed a successful career as a pediatric audiologist working in a variety of fast-paced medical settings. I was well liked, a loyal friend to many and an active member of my community. My very vibrant and blessed life was obliterated by a perverse cascade of errors from a broken medical system. This affected my loved one’s lives as profoundly as mine. Had medical providers looked for, and addressed root causes, I’d still be driving that minivan.

It has taken me a long time and immense research to piece together and understand what happened to me. I would like to share my story for whatever understanding can do to ease the pain, and for whatever help it could give to prevent others from experiencing what our family did. First and foremost, however, I want my husband and children to understand the truth of what happened to me.

I did not suddenly develop perverse mental illness out of thin air. I was a victim of repeated misdiagnoses, unrecognized adverse drug reactions/drug toxicity and profound polypharmacy.

This is described in the literature as “medication induced iatrogenic chronic health syndrome, or iatrogenic injury.” It is more common than one would think and it unnecessarily destroys lives.

The First Hit: Toxic Mold Effects Misdiagnosed as Depression

The circumstances which led to my catastrophic outcome are cumulative. It was no one thing, but several hits to my system.

In the late 1990’s, my husband and I were a happy, newly married couple enjoying a carefree dual income lifestyle. We had successful and fulfilling careers, great friends, and loved life; the world was our oyster. Despite all this, however, we both found ourselves incredibly tired all the time and experienced frequent brain fog. My husband also began having recurrent sinus infections. I developed unrelenting headaches, fibromyalgia, dry eyes, vision issues, G.I. disturbance, frequent urination, skin rashes, excessive thirst, irregular menstruation, and disorientation – I was getting lost going to familiar places.

When seeking medical attention for this cluster of symptoms, we were both told we were suffering from mild depression and were prescribed an anti-depressant (SSRI). Neither one of us actually felt “depressed,” though. Yet, we trusted our doctors knew best and so took the anti-depressant medication as prescribed.

It’s absurd that we were given a psychiatric diagnosis given the physiologic symptoms we were experiencing. More unbelievable is that we did not even question the doctor. I would later learn that the constellation of symptoms we had is consistent with toxic mold illness, a subcategory of biotoxin illness known as Chronic Inflammatory Reactive Syndrome (CIRS). I was, in fact, subsequently diagnosed with CIRS.

We unknowingly lived in a home with hidden toxic mold, where up to two feet of water collected in the crawlspace underneath the home seasonally every winter. The root cause of our symptoms which doctors diagnosed as “depression” was completely missed. We did not need antidepressant medication. We needed out of our water damaged home and treatment for mold illness/CIRS. Instead, we got put on an unnecessary neurotoxic medication with serious adverse health risks including the effects “medication spellbinding.”

The Second Hit: IVF Treatments Lupron and Synarel

When we decided to start our family, I experienced infertility. My husband and I utilized in vitro fertilization (IVF) to conceive our two children. During this process many different pharmaceuticals are prescribed for women. The doctors assured us the medications were all “safe”.

I was given Lupron and Synarel as part of my IVF treatment protocols. Both are antineoplastic agents, meaning they are cancer chemotherapy drugs, used off label for fertility treatment. Like all antineoplastics, they are harmful to both cancerous and non-cancerous cells — particularly to pregnant women and developing fetuses. It’s incredibly scary that it is actually used for conception, isn’t it? They are neurotoxic and can induce systemic damage-CNS, connective tissue, mitochondrial, immune, etc.; damage that unfolds over time.

Equally disturbing is that I was advised to stay on an antidepressant throughout pregnancy for a depressive disorder, it turns out, I never had. When I requested to be tapered off of the SSRI before attempting to achieve pregnancy, I was told that the risk of harm to the baby of a mother with untreated depression was greater than any potential adverse effects of in utero exposure to an anti-depressant medication. Really? This made absolutely no sense to me in my circumstance; the only qualifier for my diagnosis of mild depression was unrelenting fatigue. Yet, the doctor instilled such terror in me that I would be irrevocably harming my child if I did not not stay on an antidepressant during pregnancy, I reluctantly followed his advice. Prenatal exposure to an SSRI can be damaging to a developing brain and nervous system. Both my children were born with severe nervous system dysregulation and have developmental and immunological issues.

Toxic mold exposure and SSRIs can both cause various hormonal issues. My infertility was due to anovulatory cycles likely induced by the antidepressants that were inappropriately prescribed for the toxic mold. I had also been on hormonal birth control for many years prior to our attempts at conception. Suffice it to say, I was not healthy. Despite my compromised health, the fertility doctors added more toxic chemicals to my body to initiate conception.

The Third Hit: Fluoroquinolones

My children were both born via Cesarean section-my daughter due to vasa previa, my son due to failed VBAC, failure to descend. In each instance, IV Cipro (drug class fluoroquinolone) was given prophylactically.

Fluoroquinolones are associated with prolonged (up to months or years), serious, disabling and potentially irreversible drug reactions affecting several, sometimes multiple, systems, organ classes and senses”. Fluoroquinolone toxicity can lead to a subsequent systemic health cascade.

Within a couple days after receiving IV Cipro, I experienced acute onset of significant arm weakness and severe wrist pain, requiring the use of wrist guards for several months. I had difficulty physically caring for my children after their birth because of this. I also experienced photosensitivity, hyperacusis, drenching night sweats, constipation/G.I., hair loss, hyperactivity, brain fog, short term memory issues and fatigue. Additionally, I had irritability, emotional blunting, and personality changes after my son’s C-section. All of these symptoms were much more severe after my son’s delivery and they did not ever resolve completely.

After my son’s birth, I was prescribed multiple consecutive courses of oral Levaquin plus steroids for persistent pneumonia I developed during the second trimester of my pregnancy with him. The concomitant use of steroids with fluoroquinolones exponentially magnifies the damage to the body.

Levaquin and Cipro belong to the class of medication known as fluoroquinolones. They are essentially chemotherapy drugs, that negatively impact the immune system, CNS/ANS/PNS, alter DNA, cause mitochondrial and connective tissue damage as well as severe neuropsychiatric/cognitive issues.

“Fluoroquinolone adverse-reactions are categorically different from allergic reactions, rather, fluoroquinolone toxicity is a syndrome of multi-symptom, chronic illness that does not go away when administration of the drug has stopped. Fluoroquinolone adverse-reactions are similar in symptoms and scope to autoimmune diseases, fibromyalgia, ME/CFS, POTS, psychiatric illnesses, neurodegenerative diseases (like ALS and Parkinson’s), and other chronic, multi-symptom, illnesses that involve multiple bodily symptoms. Like many of those diseases, fluoroquinolones adversely affect gut healthmitochondrial healthliver healthneurotransmitter balancemineral homeostasishormones, and more. Fluoroquinolone toxicity is a multi-symptom, chronic, syndrome, that, for many, is incurable.”

Following the fluoroquinolone exposures, my health declined significantly and systemically over the next several years. Extreme fatigue, fibromyalgia, persistent headache, head pressure, G.I. issues, recurrent infections, cognitive issues, muscle wasting and visual disturbances. I also began to develop multiple chemical sensitivities, food sensitivities and electro-hypersensitivity. I have been told by physicians and researchers this is all consistent with fluoroquinolone toxicity which can lead to a progressive health cascade. However, this went unrecognized and, instead I was given large doses of antidepressants which only exacerbated my declining status.

The Fourth Hit: Multiple Viral and Fungal Infections and More Medications

Next, I was diagnosed via lab testing with neurological Lyme disease, bartonella, erichliosis, parasitosis, babesia, CIRS, systemic fungal infections, Epstein Barr and other chronic viral infections (2010). As my health had been decreasing for many years, I was relieved to finally have what doctors thought was the “root,” and I was eager to address it. I was a compliant patient and followed their complex protocols. An utterly insane amount of pharmaceuticals were given over the next six years (listed at the bottom of this post) for treatment, including more rounds of fluoroquinolones (Levaquin, Avelox) and their “second cousins” -Mepron, Malarone, Flagyl. The years of aggressive treatment proved disastrous.

Very well-intentioned doctors missed the pre-existing fluoroquinolone and SSRI toxicity. No regard was taken for the growing burden on organs, most notably the liver and brain. My G.I. system was decimated by dozens of antibiotics. Aggressive “Lyme” treatment involving years of polypharmacy only served to poison me more, further impairing my CNS and immune system. My health status continued to decline.

The Fifth Hit: Sedatives and Anticonvulsants to Quiet the Immune System

After years of Lyme treatment and with medication toxicity already through the roof, the next approach was to add Ativan, a benzodiazepine, and Gabapentin, an anticonvulsant. This was to calm mast cell activation and aide intractable insomnia that had developed. Both were used for off label purposes. Fluoroquinolone exposure can trigger mast cell activation. Toxic mold exposure can also trigger mast cell activation.

I suffered an immediate adverse drug reaction to Gabapentin in February 2015. Within the first day of beginning this medication my handwriting changed. I could not walk straight and began dropping things. I had an obvious and immediate decrease in executive function and short-term memory, along with hyperactivity, twiddling my fingers and other symptoms that I would later learn fall under the umbrella condition called akathisia. According to the Akathisia Alliance for Research and Advocacy:

“[Akathisia] …is an extremely distressing neuropsychiatric syndrome with symptoms including severe agitation, inability to remain still and an overwhelming sense of terror implicated in many suicides and acts of violence. It is a medication side effect.”

I reported all this to my doctor who instructed me to stay on the medication and that my body would “adjust with time”. These were not harmless “side effects” that would fade. This was a serious adverse drug reaction which went unrecognized as such and led to more polypharmacy.

Progressing Neurotoxicity: Let’s Up the Doses of the Contributing Medications

Over the next several months, my cognition and proprioception continued to rapidly decline. Additionally, I experienced the onset of deeply troubling new symptoms – an extreme fear to be alone, intense inner restlessness, confusion, blurry vision, severe headache, hand tremor, worsening insomnia, terror, and derealization/ depersonalization. Repeated changes were made to my Lyme treatment protocol with the assumption that these new symptoms and decline were related to that chronic health condition. The gabapentin and ativan doses were also increased. Changes were made to the SSRI. The adverse drug reaction and increasing toxicity was missed completely and, in fact, additional pharmacy worsened it.

Something was very, very wrong; I just kept declining. In no way did this feel like it was simply an exacerbation of Lyme. By the fall of 2015, things had deteriorated to the point to where I had to stop driving for safety reasons as my vision and motor skills had become too impaired. We had to hire household help and childcare because I had become essentially non-functional. I was acutely aware that my decline was negatively impacting my children and I wanted to make sure there was a capable adult in the home at all times with them. I tried hiding in the bedroom away from their view because my presentation and behavior had become very disturbing…and, I knew it. I would later come to understand that all the new symptoms beginning with the adverse reaction to gabapentin were consistent with medication induced akathisia.

Confirmation: It Was the Medications All Along

In December 2015, after ten months of searching for answers to my abrupt and progressive decline, I finally got confirmation from my doctor and own research that indeed I was experiencing numerous, severe negative medication effects and not solely an exacerbation of Lyme disease.

“In summary, the benzodiazepines can produce a wide variety of abnormal mental responses and hazardous behavioral abnormalities, including rebound anxiety and insomnia, psychosis, paranoia, violence, antisocial acts, depression, and suicide.” Dr Peter Breggin

I also learned that a supervised slow taper off of these psychotropic medications was required for my safety. I was referred by my doctor to a psychiatrist for a guided taper.

I was not “addicted” to the medications, rather my brain had become dependent on them and cessation had to be gradual and monitored.

The psychiatrist advised me to crossover from Ativan to Valium because it has a longer half-life to reduce inter-dose withdrawal effects. Then, once stable on an equivalent dose of Valium, taper slowly off of that. She also wanted to add in other medications to counter the negative side effects of the withdrawal process.

Crossing over to Valium was extremely problematic for me. I experienced an immediate adverse reaction to it with increased agitation and pacing on the very first dose. (It turns out I cannot metabolize Valium properly). Upon reporting this to my physician, she told me just to “go slower” with the process and things would “even out” over time. Despite following her instructions to slow down the crossover, nothing “evened out”. I experienced ever-increasing negative and disturbing symptoms. I now I understand that I suffered multiple drug-to-drug interactions and adverse drug reactions, drug toxicity that went unrecognized for what it was. I had developed medication induced akathisia.

Even So, Let’s Add More Medications

To counter these growing negative effects, the doctors continually changed dosages of existing drugs and added many new ones, all trial and error, with no discernible rationale. This only worsened things, causing even more frightening and violent new symptoms – rapid pacing, twisting dystonia, severe depersonalization, disinhibition, myoclonic jerking, derealization, panic, agitation, aggression, severe insomnia, paranoia, vocal tics including profanity, mono-phobia, agoraphobia, rage, stuttering, disequilibrium, severe confusion, heart palpitations, visual disturbances, air hunger, motor slowing, oppositional behavior and more. My environmental sensitivities also escalated.

The tapering protocol involved adding Valium to cross taper Ativan according to the Ashton Method recommended by my physician. I had a severe adverse drug reaction to Valium which the doctor failed to recognize, escalation of negative symptoms increased. At one point low-dose Seroquel, an antipsychotic, was prescribed to me in an off label use for the extreme insomnia that developed on this cocktail of drugs. Off label use of low dose antipsychotics for insomnia is NOT recommended.

After Seroquel was added, I developed vocal tics, suicidal ideation, extreme terror, delirium, the pacing and other movements increased dramatically. Despite reporting this immediate negative side effect of feeling intense agitation and rage, the doctor denied that a low dose of Seroquel could cause this and told me it must be underlying or emerging psychiatric illness. They continued to add and abruptly remove many other medications.

I lost my sense of human connection and self. I felt completely lobotomized. The collateral damage on my children and husband was and is INHUMANE.

Despite my reporting the immediate negative side effects with the addition of Seroquel, doctors denied that a low dose could cause them and told me it must instead be symptoms of an underlying or emerging psychiatric illness. Really? How do you suddenly develop severe psychiatric illness out of nowhere?

Prior to being put on Ativan and Gabapentin and the subsequent polypharmacy, I had NEVER before experienced suicidal ideation or the other extreme negative behavioral and cognitive changes. I was repeatedly told that my very classic symptoms of akathisia were not akathisia and not related to medications. The Barnes Scale, a standardized tool to assess drug induced akathisia, was never administered.

The very behaviors that were unfolding right before the physicians’ eyes and that I was reporting are known and dangerous medication side effects, included on manufacturers’ warnings. So why then did so many doctors fail to recognize this?

Spinning Out: Let’s Go Cold Turkey. What Could Possibly Go Wrong?

My physical/cognitive/mental health continued to spin out of control with the medication merry-go-round. In August 2016, I was admitted to a psychiatric unit from the ER due to severe confusion, pacing akathisia, and dystonia. The uninformed doctor there forced an abrupt discontinuation of the polypharmacy cocktail I had wound up being put on (in the name of “safe” tapering). Cold turkey off of four psychotropic medications overnight. This severely shocked my CNS. Over the next few weeks, I experienced what I felt were seizures, difficulty forming words, severe vertigo, worsening cognitive function, visual disturbances, racing heart, auditory hallucinations etc. Fearing for my life, as I spiraled into mania, psychosis and suicidality from this abrupt cessation, I sought reinstatement of some of the medications six weeks later. I was accused of “drug seeking” for this decision. It’s not that I wanted to be on any of these poisons ever again; I was simply trying not to die.

The partial reinstatement did stabilize me a bit.

Then, only one month later, I was again rapidly tapered off the polypharmacy cocktail at an outpatient facility. Originally, I understood, the program was completed over 15 days. I have since learned from my medical records that my rapid detox was longer and more intense than the prescribed protocol. According to my records, I received 23 days of treatment with the administration of daily six hour infusions of IV NAD+ with B complex and amino acids (December 2016). My dose was significantly greater than the maximum standard dose of 250 mg, provided at too fast a drip rate and over a treatment course that was many times longer than is typical. I also learned that it was done without proper methylation support.

From what I have learned, this treatment is purported to protect the brain and ease medication withdrawal syndrome. However, this was not at all what happened for me. I had a severe negative response to it, utterly catastrophic, inducing permanent profound physical disability. During the IV administration, I experienced extreme brain burning, increased heart rate/blood pressure, auditory hallucinations, seizures, extreme agitation, terror, tremors, fever, hypomania, worsened akathisia with pacing, violent dystonia, hand clawing, delirium, jerking and twitching, homicidal and suicidal ideation. Most horrifically, the severe adverse reaction caused an impulsive akathisia induced suicide attempt.

With pre-existing mitochondrial issues, a suspected underlying connective tissue disorder and years of cumulative toxicity (medication and environmental), it has been suggested by physicians and researchers that NAD+ would increase the cytotoxic effects through reactive oxygenation species. This seems to have accelerated my mitochondrial dysfunction leading to catastrophic connective tissue damage and a progressive musculoskeletal collapse.

There is a genetic/epigenetic researcher, Bob Miller, whose work focuses on Lyme patients and others with complex chronic diseases. He discusses NAD+ in an interview where he mentions that while for some it can be a miraculous molecule, improving many things metabolically, for others it can have serious adverse effects. He believes this could be caused by something he coins the “NADPH-steal”, where NADPH starts acting like a free radical due to other compromised enzymes stealing away the NADPH (excess of sulfites, glutamate, histamine, things like that). With the compromised methylation and Kreb’s cycle that I have, treating all those things prior would be necessary to not to overload the system and cause serious damage. No provider recognized this serious contraindication with their recommendation of NAD+.  In fact, they blindly touted the opposite claiming it to be neuroprotective for all. An interview with Bob Miller’s latest research and perspective can be seen here and here. Another researcher, who specializes in drug neurotoxicity, confirmed the negative effects of NAD+.

The Results of Polypharmacy and Failed Treatments

I have experienced profound progressive connective tissue destruction since the IV NAD+. At the age of only 54, I am now non-ambulatory, bed-bound requiring full physical care in an assisted living facility. This has left me unable to bathe or dress myself. I have difficulty feeding and swallowing. I have very limited use of my hands; my manual dexterity is poor. I have profound autonomic nervous system dysfunction and cannot tolerate even supported sitting. It feels as though my entire spine has collapsed, bone on bone-discs and other supportive connective tissue severely compromised. My tendons and ligaments feel too lax systemically throughout my body, head to toe-my feet now literally curl and bend in ways that they should not. My upper palate has fallen and my lower jaw swings so much so that it often feels like I’m being choked. Speech articulation is difficult because of the laxity in my oral cavity. Systemic collagen and cartilage loss. My internal organs don’t feel supported and I’m experiencing prolapse.  I am right side lying 24/7, propped up at an angle and need assistance repositioning my body. Toileting is difficult. My vascular and lymphatic system have been severely affected. I have full body tissue swelling, like an exploded baby diaper.

It feels as if the structural integrity of my connective tissues, the glue that holds *everything* together, is gone…like chewing gum on hot pavement or stretched out pantyhose. I quite literally feel as if I’m melting from the inside out. Additionally, I have constant severe acid burning sensation throughout my body and deep bone pain, head pressure, central vision and auditory processing issues.

And Yet They Insist It Was All In My Head

It has been a grueling 35 months since that IV NAD and rapid taper of toxic medications. During this time period, my mental and cognitive state has steadily and dramatically improved. I no longer have any psychiatric symptoms and my personality has fully returned. I am once again gentle, kind, funny thoughtful and empathetic. Doctors kept insisting that the extreme cognitive and behavioral changes I experienced, beginning with that original adverse reaction to Gabapentin, was an emerging, intrinsic psychiatric illness. It most definitely was not. Rather, it was severe psychogenic effects of drug toxicity that they failed to recognize as such.

They wanted me to continue on various psychotropic medications and strongly recommended I seek treatment in a long-term inpatient psychiatric facility for the severe mental illness they thought I had. If they had been correct in their assessment, I would not have experienced the dramatic return to a healthy mental and cognitive state that I have despite declining their medication/treatment.

I NEVER had emerging severe psychiatric illness that the doctors said I had. Rather, the perverse neuropsychiatric manifestations were actually CAUSED by repeated misdiagnosis and careless polypharmacy. The medications caused these problems.

Misinformed doctors told my family I became perversely mentally ill versus I suffered extreme adverse drug reactions and toxicity. Because of their ignorance, my family believes I abruptly lost my mind at the age of fifty. When I rejected the false diagnoses of emergent psychiatric illness and refused further treatment (i.e., re-starting psychotropic medication), I was labeled non-compliant. This caused my family to believe I didn’t care enough about them to seek “treatment”. In fact, it is because I love them so deeply that I refused treatment. I knew my decision would appear non-compliant, but had I gone back on the poisons that induced this catastrophe in the first palace, I would not have regained my mental and cognitive health. I may have lost my life.

Without an authentic understanding of what happened to me, how are my children supposed to process this trauma? I absolutely did not just lose my mind one day. I was successively and cumulatively poisoned.

In today’s modern world, physicians are grossly misinformed regarding the very real dangers of pharmaceuticals, especially the grave dangers of polypharmacy and adverse drug reactions. Our medical system does not look for root cause. The healthcare system is dangerously broken. Patients are dismissed and gas-lighted when reporting negative side effects and misdiagnosed with psychiatric illnesses instead of recognizing medication toxicity.

I was systematically poisoned into oblivion by modern medicine and labeled with perverse psychiatric illness that did not exist prior. My children deserve to know the truth of what happened. This absolutely never should have happened to me, to my husband, nor to my children.

Over the last 6-12 months, I have had multiple objective tests completed that verified my cognitive, psychological and physical status. As a result, four separate doctors concluded that my past decline was due medical error and polypharmacy. While this is validating, it does not change the fact that my family is now gone and I am left permanently physically disabled due to a fatally flawed medical system and its love affair with prescription drugs.

What They Prescribed

These are most of the medications I was prescribed for the complex umbrella of Lyme disease, co-infections, CIRS, etc. with no regard for toxicity to the liver, brain or organs. Many of these were extended courses, long-term, and given concurrently. Looking back, I cannot believe that I survived. This is what medical polypharmacy looks like. It is not one or two drugs, it is dozens.

  • Macrobid (nitrofurantoin)
  • Ceftin (cefuroxime)
  • Cephalexin
  • Moxatag (amoxicillin)
  • Cefdinir
  • Minocylcline
  • Doryx (doxycycline)
  • Cedax (ceftibuten)
  • Tindamax (tindazole)
  • Minocycline
  • Clindamycin
  • Biaxin (clarithromycin)
  • Rifampin (rifampicin)
  • Augmentin (amoxicillin and clavulanate potassium)
  • Deplin/Duleek-DP (l-methylfolate)
  • Fluconazole
  • Ketoconazole
  • Itraconazole
  • Voriconazole
  • Rocephin (ceftriaxone ) – IV via Hickman catheter
  • Azithromycin – IV via Hickman catheter
  • Mepron(atovaquone)
  • Alinia (nitazoxanide)
  • Malarone (atovaquone/proguanil)
  • Biltricide (praziquantel)
  • Nystatin
  • Bicillian (penicillin G benzathine) – IM injection
  • Albendazole
  • Mebendazole
  • Stromectol (ivermectin)
  • Bactrim/Septra (sulfamethoxazole/trimethoprim)
  • Vancomycin – IV peripheral
  • Cortef (hydrocortisone)
  • Testosterone/progesterone (BHRT)
  • NAD/B complex – IV
  • Meyers cocktails – IV
  • Glutathione – IV
  • Phosphatidylcholine – IV
  • Cholestyramine (CSM)
  • Ketotifen
  • Hydroxyzine
  • Vitamin B12 – Subcutaneous Injection
  • Low-dose naltrexone (LDN)
  • Cipro (ciprofloxacin) – IV
  • Levaquin (levofloxacin) – Repeated and extended courses
  • Avelox (moxifloxacin) – Repeated and extended courses
  • Valtrex (valaciclovir)
  • Medrol (methylprednisolone) – Given concurrently with fluoroquinolones
  • Symbicort (budesonide/formoterol)
  • Synarel (nafarelin acetate)
  • Lupron (leuprorelin)
  • Vioxx (rofecoxib)
  • VSL-3 (bifidobacterium, lactobacillus, and streptococcus probiotics)
  • Singulair (montelukast)
  • ProAir (albuterol)
  • Xopenex (levalbuterol)
  • DuoNeb (ipratropium/albuterol)
  • Alvesco (ciclesonide)
  • Prednisone
  • Promethazine/codeine
  • Chloestyramine
  • Probalan (probenecid)
  • Ursodiol – Given because of rocephin
  • Ferrous gluconate (iron)
  • Nexium (esomeprazole magnesium)
  • Xyzal (levocetirizine)
  • Allegra (fexofenadine)

…And HUNDREDS of oral herbal medicines and supplements

The cascade into unnecessary and catastrophic psychotropic polypharmacy:

  • Celexa (citalopram)
  • Lexapro (escitalopram)
  • Zoloft (sertraline)
  • Remeron (mirtazapine)
  • Buspar (buspirone)
  • Benzodiazepines
  • Ativan (lorazepam)
  • Valium (diazepam)
  • Clonazepam
  • Antipsychotics
  • Seroquel (quetiapine)
  • Risperidone
  • Zyprexa (olanzapine)
  • Antihistamines
  • Benadryl (diphenhydramine)
  • Hydroxyzine
  • Anticonvulsants
  • Gabapentin
  • Lyrica (pregabalin)
  • Baclofen

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: November 13, 2019. 

 

Unexplained New Onset Fatigue and Other Symptoms

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For almost a year, I have suffered from fatigue, morning sinus and congestion problems, and other health issues including type 2 diabetes, insomnia, and depression. For the last four months, I have been dealing with a skin rash on my legs, arms, stomach, and small outbreaks on my face. I have been misdiagnosed by my primary doctor and two different naturopaths. They told me that it was fungal and I was given anti-fungals. I don’t remember the name. After a second visit to a dermatologist, the doctor did a scraping and a biopsy and told me that it definitely wasn’t fungal. They are going to do some patch tests this week. I have had to keep my mental outlook positive because, for the last year, the doctors have had no answers.

My primary has told me that I am an anomaly. Great! But still no answers. She has done a plethora of blood tests, two or three CAT scans, and other imagery. The only blood test that was a little high was my white blood cell count. My iron is high because of my testosterone injections. I was initially told that I had Lyme’s disease but my blood tests found that to be negative. Then I was told that I have Epstein Barr, but my blood tests were negative for that also. I am used to an active lifestyle, lifting weights, hiking, backpacking, fishing, martial arts, etc., but, for the last year, I have been extremely low energy with significant fatigue. I will sleep 8 hours, get up for a while, and just feel like going back to bed. I would like my life back!

Early Thyroid Problems

I take levothyroxine because my thyroid was low about 20 years ago. They did a scan of my thyroid and told me that my thyroid was quite small, probably due to my Graves’ disease treatment when I was 16 years old. I was told that I was close to death at that time. I remember some of the unpleasant things I went through at that time. They gave me a drink called a “nuclear cocktail” and then, for the next 4+ years, they treated me with propylthiouracil. I fought my way through this disease and started lifting weights and working out when I felt better. I was about 16 years old at the time. I continued to work out and have been athletic all of my life.

Back Pain and Spine Curvature

After years of athletics that included snow skiing and martial arts, I began to develop significant back pain. After an MRI in 2004, the doctors asked if I had polio. The test showed curvature of the spine, a bulging disc, and some areas of bone on bone.  At that point, I was prescribed oxycodone and have been on it ever since. Despite the back issues, I have functioned fine until this last year when a variety of new symptoms manifested, including unremitting fatigue. I have had a big change in my energy levels, sex drive, and the pain issues have increased and so it is a struggle to lift weights. My hands, shoulders, spine, and feet have increased pain. I have always been very self-motivated, but this last year has been very tough. The doctors say that I have osteoarthritis and fibromyalgia. I don’t know anymore.

Maybe Thiamine for the Fatigue?

Recently, I listened to Elliot Overton’s interview with Dr. Marrs about thiamine and found many of my symptoms were possibly linked to thiamine deficiency. I have taken a myriad of nutritional supplements over the years. They are listed below. All to no avail. I have also started taking thiamine, but the jury is not out on that yet. It has been pretty expensive with all the doctor appointments and nutritional/medical expenses.

There is a lot more that I have probably missed, but I wanted to keep this to a short story, not a novel. What am I missing with my health issues? The fatigue is unending. The doctors have no advice and consider me an anomaly. Am I? Or are we simply missing something?

Current Medications

  • Levothyroxine-125mcg – for approximately 29 years.
  • Sertraline-50 mg – last two years
  • Lisinopril-10mg – last year and a half
  • Metformin-750mg – last two years
  • Hydroxyzine-50 mg – at bedtime for sleep issues for the last year and a half
  • Oxycodone-10 mg up to 4 times a day since 2004. I see my spine doc every 2 months. I have some spine damage and joint issues from the martial arts and various other sports.
  • Dicloflenac- 50 mg (Rarely use)
  • Lunesta-3 mg (1 at night) – this was given to wean me off of clonazepam.
  • Testosterone-.5 ml – injection every 2 weeks – for low testosterone
  • Aspirin-81 mg-one a day for thick blood due to the testosterone replacement therapy
  • Kenalog injection for rash. I have had only one injection and the dermatologist told me that it would be good for a month.
  • Triamcinolone cream to use on the various rash sites.

Current Supplements

  • Vitamin D3-10,000 IU a day (Kirkland brand)
  • B12-5000 mcg sublingual 1 a day
  • Saw Palmetto-450 mg, 1 a day (ZHOU brand)
  • Ceylon Cinnamon-1200 mg, 1 a day (Spring Valley brand)
  • Garlic-2 capsules, 1 a day (Kyolic brand)
  • Niacinamide-500 mg, 2 times a day (Nutricost)
  • Liposomal Vitamin C-1400 mg, twice a day
  • Benfotiamine-300 mg, twice a day

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 article was published originally on February 19, 2020.

I’ll Sleep When I Am Dead: Connections Between Diet, Sleep, and Health

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My journey into discovering what it means to be well began over 60 years ago, when Coca Cola’s popularity burst on the scene back in the late 60’s early 70’s, when a McDonald’s big Mac could be purchased for 49 cents, and Wonder Bread’s claim to fame was “Helps build strong bodies 12 ways.” Instead of eating a nutritious lunch, we were snookered into believing that bologna, whose first name was Oscar and was sandwiched between two slices of white bread, a Tab soda, and a bag of Charles chips was considered a healthy meal. It was anything but healthy and it left us feeling empty, with grumbling stomachs and an unsteady blood sugar level. I lived on these types of foods for decades as my health declined. I did not learn until I was 44 years old that my poor food choices were not only affecting my health but my capacity to sleep. I never slept. When I cleaned up my diet, sleep improved. Unfortunately, the improvements were short-lived because my thyroid became overactive with onset of Graves’ disease. This too, I largely resolved with diet, supplements, and alternative therapies, as conventional medicine seemed to make me worse and all that was offered were drugs and/or surgery. Although I am not yet recovered, I am much better than I was. This is my story.

Early Childhood: Skinny, Unattractive, and Sickly

As a child, I was very thin and clumsy. Nowadays, I probably would have been considered anorexic. I did not have an appetite due to the postnasal drip running down the back of my throat like a sieve. All I could eat on our weekly trip to McDonald’s was half of a regular size hamburger with no condiments. I remember picking through my food with my fork to dig a hole, hoping somehow the food would fall into the hole and disappear, or wishing the dog was inside so that I could hand off my vegetables to him.

The food I consumed came from what is considered a SAD diet (Standard American diet). It originated from the fast-food industry, had no nutritional value whatsoever, and laid a poor foundation for what I believe was my general unwellness. I was never well as child or young adult. As a result of my poor eating habits, allergies, buck teeth, breathing problems, and fitful sleep were my constant companions. I was labeled skinny, unattractive, and sickly. The Weston A. Price Foundation would have had a field day reviewing my overall health relationships. From inadequate nutrition to underdeveloped and overcrowded dental health which then led to poor physical health. I looked like a raccoon with dark circles under my eyes. I was a mess – (spoken with a thick southern accent.)

My mother did her best by encouraging me, providing what she considered to be a balanced diet, general health, and sleep basics, but over time, my body developed poorly, and I suffered miserable allergies to everything. Allergy shots were the recommendation for all of my environmental conflicts. I was left battered and bruised and they did not even work. Eventually, to combat the allergies, they removed my tonsils. This is a barbaric answer to solving a health issue, just remove the organ. I found out much later that the tonsils are an important part of our immune system.

Young Adulthood: Bone Demineralization and Costochondritis

I managed to make it through high school unscathed except for mononucleosis and skin irritations that could be traced back to a poor diet. College brought about new challenges when it came time to eat. This was solved by the plethora of quick meals that provided little to no vitamins or minerals, and of course, my sleep habits continued to decline.

At age 27, I was diagnosed with costochondritis. This was brought about by a rigorous exercise routine at the gym, in the name of getting healthy. “Let’s Get Physical” was the song that sent everyone running to the clubs to get fit and trim, but my lack of essential nutrients caused extreme damage to my ribs. Looking back, I find it hard to believe that I had two relatively healthy children, but then, they received most of the nutrients that were being ingested and I was left with zero. I was eating healthy salads, but I had no clue that my bones were breaking down.

By the time I reached age 39, I could now add osteopenia, depression, sleep deprivation and menopause to my list of infirmities. Nine medications and 75 pounds later, I would also be able to add obesity to my list. It was almost as if this deterioration had catapulted me into a rapid aging process. This makes sense, as Matthew Walker sleep expert, author, and professor at UC Berkley says, ‘the shorter your sleep, the shorter your life’.

Connecting Poor Diet to Poor Sleep and Everything Else In Between

While I was struggling with my own health issues, my son developed his own. At age 12, he confessed to me and my husband that he wasn’t sure he wanted to live anymore. Around the same time, my mother died. This was enough to send anyone over the edge, but my son needed me, so it was time to put my big girl panties on and get answers to why this was happening. I began connecting the dots. We both had depression, allergies or asthma, symptoms of ADD and the “piece-de-resistance” we didn’t sleep! Upon further investigation, I learned that we were both anxious all the time. Could the poor diet and sleep deprivation be behind our illnesses? Turns out they were.

From that point forward, I cleaned up our diet. My husband came home one day to find me chucking all the processed food into the garbage. We began drinking water instead of soda or other flavored drinks and I began to research sleep, nutrition, and energy medicine. This was now my passion. I was determined to not only repair the damage I had caused with the decades long poor diet, but to give my son the gift of healing and create a reason for him to live.

Polypharmacy Induced Vertigo: Enough is Enough

In 2003, I would unlearn everything I thought I knew about wellness. It began with trip to the ER to investigate vertigo. I was sent home with no information as to why I had vertigo other then they could do an MRI if needed. Could the very medications I was taking (9 prescriptions) be behind this malady? My nurse practitioner helped me to slowly detox from the medication I was taking for depression, and this is when I began seeing a nutritionist and using something called magnet therapy. I had read a study on Transcranial Magnetic Stimulation (TMS) that showed promise as a novel antidepressant treatment. It was in 1831 that Michael Faraday discovered that electrical currents can be converted into magnetic fields and vice versa. How fortuitous I was introduced to a company that was utilizing magnets as wellness tools.

The nutritionist performed what is called microscopy. His assessment was dead on. He said, ‘I bet you’re tired all the time’. He also asked if I was on a statin, to which I replied ‘yes, but that I was trying to find a better alternative’. He suggested a liver/gallbladder cleanse and whole food supplements that would support these organs. If it were not for his intervention, I doubt that I would have my gallbladder today. I’m honored and humbled to have known Ted Aloisio and learn about how “Blood Never Lies” his book and his teachings that forever changed the quality of my life.

Thyroid Storm

Another pivotal time for me was September 2017. I wound up in the emergency room. My heart felt like it was about to be launched like a projectile right out of my chest. It was skipping beats too. I had lost a lot of weight with my new focus on nutrition. I thought I was just shedding the old me that was full of emotional discord, bad nutritional habits, and unearthing the real me that was hiding inside. I was in denial. In reality, I had not been feeling well for over a year. My sleep was horrible. I was lucky if I got 5 hours a night and there was a lump on my neck which scared the living hell out of me.

Here, I was a teacher of wellness, and yet was the poster child for being unhealthy. Surprise, surprise you have a problem with your thyroid Ms. Hazelgrove. The official diagnosis was thyrotoxicosis with nodule. My heart was reacting to a hyperactive thyroid, which was being fueled by an autoimmune condition called Graves’ disease. I was immediately put on propranolol for my heart. I asked if it was going to interfere with my sleep and was told that it would not. He lied. I was already having issues the very first night with melatonin production due to the influence of this particular beta-blocker. Beta blockers reduce melatonin release.

I was getting only 2 hours of sleep, so I started Hemp oil two days later. I was not about to go back into the depths of depression because of sleep deprivation. My visit to my primary physician 21 days later was short and sweet. After reviewing my blood lab results and the ultrasound, he had his office manager call me to tell me I was toxic and needed to find an endocrinologists immediately. My T3 was 13, which was extremely high. I agreed to go on methimazole in the meantime so I could look at options, but according to the endocrinologist, I had only the one option. “What am I going to do now?’ I thought to myself. My head was spinning. I knew I had to get away and think. ‘Can’t I just heal it by eating better, sleeping more, and eliminating stress?’

I am truly blessed to have such amazing friends and one in particular had offered to let me stay at her cottage for a weekend. This was about a month into my engorged thyroid, which was now causing me dreadful bouts of diarrhea. I had to wear a diaper on my trip down there, as my bowels were now in charge of my life. I got there and unpacked. This was not an easy task because my body was running “Mach 2 with my Hair on Fire.” Since the thyroid controls metabolism and mine was hyperactive, it felt like I was exercising 24/7. Maintaining energy was a continuous struggle, like a rollercoaster going up and down multiple times a day. I was in the fight or flight mode continuously and my body was in a constant state of catabolism, in order to fuel the persistently heightened metabolism.

Limited Options from Conventional Medicine

My visits with the endocrinologists started out cordial but didn’t end well. I stayed on methimazole for three months, to see if the numbers could be brought down – which they did eventually lower, but the liver enzymes went up and the level 10 pain was unbearable. The only option I was given was nuclear medicine, which meant using radioactive iodine to destroy my thyroid and test the nodule to see if it was cancer. I was told a needle biopsy would not be accurate. I didn’t like the side effects of radioactive iodine and the fact that it increased my chances of breast cancer, which was already an inherited trait in my family. The endocrinologist didn’t want to perform any tests or protocol to see if the nodule was cancerous until these numbers were in a more manageable range and scheduled a second appointment for 5 months later – 5 months!

This was not acceptable to me and so in the meantime, I began researching, and implementing other strategies. I had a friend who owned a wellness center, and I began using sound and infrared sauna therapy. I met with a colleague who recommended a liver cleanse and supplements to help with the healing process. When I had my lab tests done in January, all the numbers looked good, but the liver enzymes were still elevated. I remember the doctor telling me that I shouldn’t stay on the methimazole very long. When I questioned if the medicine had caused the increase in the liver enzymes, she became defensive and said that she didn’t think it was the medicine. Somehow, it was my fault that I didn’t want her to perform a test using radioactive iodine to see if I had cancer, which could inevitably cause cancer down the road.

When I saw her again in February, she asked about the methimazole. I told her that because my liver enzymes were high and so, I had stopped taking it and started taking Iodoral, a high potassium-based iodine supplement. There is much research on this form of treatment. She was not happy. She said that if the nodule was cancer, then it could have now spread to my liver and that could be the reason for the high liver enzymes. She continued to deny that the liver enzymes were elevated because of the methimazole. It was at this point, I mentioned that the nodule had receded. Her response was that nodules just doesn’t disappear. She then grabbed my throat with such force that it hurt. Needless to say, she was fired.

In March, I began seeing a practitioner that specialized in thyroid issues. He recommended running blood tests to see if there were any other autoimmune issues. Sure enough, I also had the Epstein-Barr Virus. I visited another practitioner that did thermographic imaging. The tests did not show any inflammation in the breasts or the thyroid area. March, I went back to my PCP and my blood tests looked good but continued with the propranolol because my heart rate was still elevated. It was also recommended that I keep a close watch on my eyes, so my eye doctor was enlisted to get his perspective on the pressure and strain the Graves’ disease can have on the eyes. In July, I went back to the PCP. He said that I shouldn’t do so much research into nutrition, that knowledge can be dangerous and referenced the Garden of Eden.

Discovering Energy Work

While all of this was going on, I finished my certification for the Emotion Code Technique (link to a reference The Emotion Code | Energy Healing Method | Discover Healing). In August, I started to learn how to meditate and in September started breast milk protocol (Milk Therapy: Unexpected Uses for Human Breast Milk (nih.gov)) to see if I could address a mitochondrial energy reboot and the autoimmune issue. I was gifted about a month’s supply of frozen milk from someone who owned an organic farm. Since breast milk has stem cells and T cells, maybe it could help increase neutrophils and help reverse the autoimmune disease. I read a blog by the medical medium that had talked about pregnancy and thyroid issues. It begged the question, what if my last pregnancy could have been the final straw to being so nutritiously energetically depleted that there was now collateral damage. Interestingly enough, my mom wasn’t able to breast feed me. So maybe this was another missing piece to my poor health.

January 2019, I had to go back on propranolol. I continued with sound and infrared sauna therapy each week. I am forever grateful to my friend who offered this treatment. Some weeks were just hard to rally around with energy to do even the simplest of tasks. Mind you I’m still running my Wellness teaching and coaching business but on a much smaller scale. February through April I concentrated on being a grandmother, you never know how much time we have with family. Easter Sunday, I met with a practitioner to experienced Pranic healing for the first time. This was definitely the icing on the cake as far as energy work is concerned. I went home feeling better that I had felt in years, but this too was short lived. In June, I was able to get away to the beach, which always rejuvenated me. Meditation continued to also give me some peace in between the thyroid revolution I was enduring, and it gave me a chance to learn different approaches to this incredible way to connect to our inner spirit. In September, I began to learn how to incorporate medicinal cooking and more about Ayurveda herbs. In November, my friend closed her wellness center and I had to teach my class at the University of Richmond from a chair again. My daughter came through with some more of her frozen breast milk, which seemed to help somewhat, but again, I would plateau.

Searching For Healing Amid a Pandemic

The pandemic brought us all a year we will never forget. It started with a high note but then April we would all experience dare I say it the new normal. The best thing I can say about 2020 is I continued to search for healing. I figured I had tried all I could to modulate the physical, so now I would elevate the spiritual side of me. We are after all spirit mind and body why not explore how this can facilitate and streamline the healing process? I began to learn all I could about Pranic healing. Each day I would incorporate my spiritual practice of meditation and cleansing of dirty energy. This worked well with my emotion code technique of taking out the trash of old emotional baggage that doesn’t serve us and can even cause illness. I was still teaching my class and now doing online podcast educating others how to create wellness. I began doing a lot of blogging about my journey of healing encouraging others and planting seeds of hope. Being at home gave me the opportunity to also do research and take classes to learn what I could about healing the whole self; a time windfall that otherwise wouldn’t have presented itself if it weren’t for the pandemic.

Discovering Thiamine

In April of this year, the eye doctor noticed an increase in eye pressure, which he wasn’t sure if it was due to the Graves or if it could be glaucoma. When I went back in July and it was still there, I was referred to an eye specialist to investigate further.  I am now seeing more cross-eyed, and it appeared to be worsening. In October, I learned about thiamine – vitamin B1 and began taking 500-1,000 mg a day. Wow, immediately my neck felt cooler, and the headaches I had been suffering from subsided. When I saw the doctor again in November and questioned whether or not the eye problems could be related to a thiamine deficiency, he got agitated and said he was not a nutritionist. He wanted to know if I had been tested to see if I was deficient in the first place. I guess physical improvement is not a sign of progress or healing.

It was around the same time that I also learned about pyrroloquinoline quinone and added that to what I was already taking. This is what I am currently taking: Kenzen Mega Daily 4® , Kenzen Omegagreen  plus DHA®, Kenzen Immunity® (14 medicinal mushrooms), Jade GreenZymes® (Gluten Free barely grass which has SOD/Superoxide dismutase an antioxidant), Kenzen Vital Balance shake®,(® from Nikken), Lithium, Iordoral, Bilberry, Ginkgo Biloba, Resveratrol, L Carnitine, N Acetylcysteine, Siberian ginseng, Boswellia – Frankincense, Vitamin B1, Cal-mag-zinc, D3 & K2, Ubiquinol + Pyrroloquinoline quinone, Astragalus tincture, oil of oregano, tincture, Bugleweed tincture, Sarsaparilla tincture, Artichoke tincture and cod liver oil. I drink a tea everyday with elderberry, Chamomile, fennel, hibiscus, and green tea because of ECGC (epigallocatechin gallate); which inhibits cellular oxidation and prevents free radical damage to cells.

While I am not fully recovered, I am doing much better, in part because of dietary changes that have allowed me to sleep longer, and more soundly which has enabled me to achieve a parasympathetic or healing response. I am hopeful that 2022 will bring to light some interesting answers. I have an appointment with a doctor of Chinese Medicine soon and looking forward to improved health. Stay tuned to find out what happens next on my journey navigating the road less traveled.

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