My life should never have taken the catastrophic turns that it did. I 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 via a broken medical system. This affected my loved ones’ lives as profoundly as it did mine. Had medical providers looked for and addressed the root causes of the ailments for which I was treated, I’d still be driving that minivan.

It has taken me a long time and an immense amount of 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 can offer 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 some perverse form of mental illness out of thin air. I was a victim of repeated misdiagnoses, unrecognized adverse drug reactions/drug toxicity, and profound polypharmacy. What I experienced is described in the literature as “medication-induced iatrogenic chronic health syndrome, or iatrogenic injury.” It is more common than one would think, and as readers of Mad in America will recognize, it destroys lives.

The First Hit: Toxic Mold Effects Misdiagnosed as Depression

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

In the late 1990s, 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 we sought 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 antidepressant 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

The Second Hit: IVF Treatments Lupron and Synarel

When we decided to start our family in 2000, I experienced infertility. My husband and I utilized in vitro fertilization (IVF) to conceive our two children. During this process, many different pharmaceuticals we prescribed to me. These drugs are commonly used to treat infertility and my doctors assured us the medications were “safe.”

As part of my IVF treatment protocols, I was given Lupron and Synarel. 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 in pregnant women and developing fetuses. It’s incredibly scary that they are used to promote conception, isn’t it? They are neurotoxic and can induce systemic damage to the central nervous system, connective tissue, mitochondria,  the immune system, etc. over time. Equally disturbing is that I was advised to stay on the antidepressant I was taking throughout my 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 risks to a baby from his mother’s untreated depression were greater than any potential adverse effects of in-utero exposure to antidepressant medication. Really? This made absolutely no sense to me; the only qualifier for my diagnosis of mild depression was unrelenting fatigue. But the doctor had instilled terror in me that if I did not stay on an antidepressant during pregnancy, I would be irrevocably harming my child. So I reluctantly followed his advice, unaware that 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.

I also learned that toxic mold exposure and SSRIs can both cause various hormonal issues. My infertility was due to anovulatory cycles (failure to ovulate), but this condition was likely induced by the antidepressants inappropriately prescribed to treat the effects of toxic mold. I had also been on hormonal birth control for many years prior to our attempts to conceive. Suffice it to say, I was not healthy when I attempted to get pregnant, but despite my compromised health, the fertility doctors added more toxic chemicals to my body burden.

The Third Hit: Fluoroquinolones

Both of my children were both born via Cesarean section-my daughter due to vasa previa, my son due to failure to descend. In each instance, I received IV Ciprofloxacin prophylactically to stave off potential infection.

Within a couple of days after receiving IV Cipro, I experienced acute onset of significant arm weakness and severe wrist pain, requiring me to use wrist guards for several months. Because of this, I had difficulty physically caring for my children after their births. I also experienced photosensitivity, hyperacusis (sensitivity to sound), drenching night sweats, constipation/G.I. distress, 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 magnified the damage to my body.

Cipro and Levaquin belong to the class of medication known as fluoroquinolones. According to the European Medicines Agency, “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.” And fluoroquinolone toxicity can lead to a systemic health cascade. Like antineoplastics, fluoroquinolones are essentially chemotherapy drugs that negatively impact the immune system, central nervous system, autonomic nervous system, and peripheral nervous system. They also alter DNA, cause mitochondrial and connective-tissue damage, and can trigger severe neuropsychiatric/cognitive issues. Increasingly, fluoroquinolone toxicity is being recognized as a chronic syndrome, very different from “allergic reactions in that it does not go away when the drug is stopped.

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 were just some of the symptoms I experienced. 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 syndrome went unrecognized and, instead I was prescribed larger doses of antidepressants, which only exacerbated my declining status.

The Fourth Hit: Multiple Bacteria, Viral, and Fungal Infections… and More Medications

Between 2010-2013, I was diagnosed with Lyme disease and multiple coinfections (Bartonella, Erichliosis, and Babesia) along with other persistent parasitic, fungal, bacterial and viral infections (ascariasis, candidiasis, mycoplasma, Epstein Bar, and HHV6).  I also received diagnoses of ME/CFS and CIRS (see above). As my health had been declining for many years, I was relieved to finally discover what doctors thought was the “root” cause of all my symptoms, and I was eager to address it. I was a compliant patient and followed their complex protocols. Over the next six years, an utterly absurd number of different pharmaceuticals were prescribed to me as treatment (listed at the bottom of this post), including more rounds of fluoroquinolones (Levaquin, Avelox) and their “second cousins,” Mepron, Malarone, and Flagyl. The years of aggressive treatment proved disastrous.

Very well-intentioned doctors missed my pre-existing fluoroquinolone and SSRI toxicity. No regard was shown for the growing burden on my organs, most notably the liver and brain. My G.I. system was decimated by the dozens of antibiotics I took. Aggressive Lyme treatment involving years of polypharmacy only served to further poison me, further impairing my central nervous system and immune system.

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

After years of Lyme treatment and with my body’s medication toxicity already through the roof, the next approach my doctors came up with was to add Ativan, a benzodiazepine, and gabapentin, an anticonvulsant, to my regimen–both off-label. These drugs were prescribed to calm the mast-cell activation and aid the intractable insomnia I had developed. Fluoroquinolone exposure can trigger mast-cell activation. So can toxic mold exposure.

In February 2015, I suffered an immediate adverse drug reaction to gabapentin. 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, the condition ”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, however. They were 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 (perception of my body’s position in space) continued to rapidly decline. Additionally, I experienced the onset of deeply troubling new symptoms: an extreme fear of being 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 also made to the SSRI. The adverse drug reactions and increasing toxicity I was experiencing were missed completely and the additional pharmacy was only worsening it.

Something was very, very wrong; I just kept declining. In no way did my deterioration feel like it was simply an exacerbation of Lyme. By the fall of 2015, things had deteriorated to the point where I had to stop driving: 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 with them at all times. I even 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 Drugs All Along

In December 2015, after 10 months of searching for answers to my abrupt and progressive decline, I finally got confirmation from my doctor and own research that I was indeed experiencing numerous, severe negative effects of the psychiatric drugs I was on. As Dr. Peter Breggin has pointed out, “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.” Similarly, gabapentin and other antiseizure drugs can cause a variety of behavior changes. Breggin cites the FDA’s warning that they can cause or exacerbate symptoms such as “anxiety, agitation, hostility, mania and hypomania,” which “may be precursors to emerging suicidality.”

I also learned that a slow, supervised taper off of these psychotropic medications was required for my safety. My doctor, therefore, referred me to a psychiatrist for a guided taper.  I was not “addicted” to the medications; rather, my brain had become dependent on them and so cessation had to be gradual and monitored.

The psychiatrist advised me to first cross over from Ativan to another benzo, Valium, because it has a longer half-life and could help to reduce any inter-dose withdrawal effects. Then, once I was stable on an equivalent dose of Valium, I was to 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 my following her instructions, nothing “evened out.” I experienced ever-increasing negative and disturbing symptoms. I now understand that I suffered from multiple drug-to-drug interactions and adverse drug reactions, drug toxicity that went unrecognized. There was no question: 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 or exacerbated symptoms—rapid pacing, twisting dystonia (involuntary muscle contractions), severe depersonalization, disinhibition, myoclonic jerking, derealization, panic, agitation, aggression, severe insomnia, paranoia, vocal tics including profanity, monophobia (fear of being alone), agoraphobia, rage, stuttering, disequilibrium, severe confusion, heart palpitations, visual disturbances, air hunger, motor slowing, oppositional behavior, and more. My environmental sensitivities also escalated.

After the cross-taper from Ativan to Valium made things worse, not better, at one point I was prescribed low-dose Seroquel, an antipsychotic, off label for the extreme insomnia I had developed on this cocktail of drugs. Off label use of low dose antipsychotics for insomnia is not recommended, and it was soon clear why: After Seroquel was added, I developed vocal tics, suicidal ideation, extreme terror, and delirium, and the pacing and other movements increased dramatically. Despite my reporting this immediate negative side effect of feeling intense agitation and rage, the doctors denied that a low dose of Seroquel could cause this effect and told me it must be due to 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’ve described. Yet 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. And the very behaviors that I’d been reporting and that were unfolding right before the physicians’ eyes are known and dangerous medication side effects, included in manufacturers’ warnings. So why then did so many doctors fail to recognize this? Why did they continue to prescribe yet more medications?

By this point, I had lost my sense of human connection and self. I felt completely lobotomized. The collateral damage on my children and husband was and is inhumane.

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

My physical/cognitive/mental health continued to spin out of control on 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. Then, the uninformed doctor there forced an abrupt discontinuation of the polypharmacy cocktail I had wound up on in the name of “safe” tapering. I went cold turkey off of four psychotropic medications overnight. This severely shocked my CNS. Over the next few weeks, I experienced what felt like seizures and had difficulty forming words, severe vertigo, worsening cognitive function, visual disturbances, racing heart, auditory hallucinations, and more terrifying symptoms. Six weeks later, fearing for my life as I spiraled into mania, psychosis, and suicidality from this abrupt cessation, I sought reinstatement of some of the medications. Doctors accused me of “drug-seeking.” 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, while I was at an outpatient facility only one month later, I was again rapidly tapered off the polypharmacy cocktail. Originally, I understood, the withdrawal program was to be completed over 15 days. I have since learned that my rapid detox was longer and more intense than the prescribed protocol. According to my medical records, I received 23 days of treatment, which included the administration of daily six-hour infusions of IV NAD+ (a coenzyme necessary for metabolism) with B complex and amino acids. I later learned that the dose I was given was significantly greater than the maximum standard dose and was provided at too fast a drip rate. The treatment course was also many times longer than is typical and was done without proper methylation support.

This treatment protocol is purported to protect the brain and ease medication withdrawal syndrome. However, this was not at all what happened to me. I had a severe, utterly catastrophic response to it, inducing permanent and profound physical disability. During the IV NAD+ 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, and homicidal and suicidal ideation. Most horrifically, the severe adverse reaction provoked me to make an impulsive, akathisia-induced suicide attempt.

I now understand that, with my pre-existing mitochondrial issues, a suspected underlying connective tissue disorder, and years of cumulative toxicity (both medication-related and environmental), NAD+ would not only not help me, but would be likely to have severe adverse effects.  Genetic/ epigenetic researcher Bob Miller, among others—whose work focuses on Lyme patients and others with complex chronic diseases—has said in an interview that for some, NAD+ treatment causes a destructive process in which certain molecules in the body start behaving in destructive ways. This process seems to have accelerated my mitochondrial dysfunction, which led to extensive connective-tissue damage and progressive collapse of my musculoskeletal system.

No provider recognized this serious contraindication with their recommendation that I be given NAD+. Instead, they touted the opposite, claiming it to be neuroprotective for all.

The Results of Polypharmacy and Failed Treatments

As I say, I have experienced profound progressive connective tissue destruction since receiving the IV NAD+. At the age of only 55, I am now non-ambulatory, bed-bound and 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 also have profound autonomic nervous system dysfunction and cannot tolerate even supported sitting. It feels as though my entire spine has collapsed, with 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 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. I have 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 systems 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 a constant, severe acid-burning sensation throughout my body and deep bone pain, head pressure, and central vision and auditory processing issues.

And Yet They Insist It Was All in My Head

It has been a grueling 39 months since that IV NAD+ and rapid taper off toxic medications. During this 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, were signs of an emerging, intrinsic psychiatric illness. They had wanted me to continue on various psychotropic medications and strongly recommended that I seek treatment in a long-term inpatient psychiatric facility for my “severe mental illness.” 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 now enjoy despite declining their medication/treatment.

But I never had the emerging severe psychiatric illness the doctors said I had. Rather, the perverse neuropsychiatric manifestations were actually triggered by repeated misdiagnosis and careless polypharmacy. No question: The toxic effects of medications caused these problems.

But my misinformed doctors told my family that I’d become perversely mentally ill. Because of their ignorance, my family believes that I abruptly lost my mind at the age of fifty. When I rejected the false diagnoses and refused further interventions (i.e., re-starting psychotropic medication), doctors labeled me 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 place, I would never have regained my mental and cognitive health. I may even have lost my life.

Speaking My Truth

Without an authentic understanding of what happened to me, how are my children supposed to process this trauma?  That is why I wrote this essay: To speak the truth about what happened to me.

In today’s world, physicians are grossly misinformed regarding the very real risks of pharmaceuticals, especially the grave dangers of polypharmacy and adverse drug reactions. Our medical system does not look for the root causes of our symptoms and is dangerously broken. Patients are dismissed and gaslighted when reporting negative side effects and misdiagnosed with psychiatric illnesses instead of medication toxicity.

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

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

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What They Prescribed

Following are most of the medications I was prescribed for my complex constellation of symptoms of Lyme disease, co-infections, CIRS, etc., with no regard for their potential toxicity to my liver, brain, or organs. Many of these were extended courses of drugs, taken 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

Minocycline

Doryx (doxycycline)

Cedax (ceftibuten)

Tindamax (tinidazole)

Minocycline

Clindamycin

Biaxin (clarithromycin)

Rifampin (rifampicin)

Augmentin (amoxicillin and clavulanate potassium)

Deplin/Duleek-DP (l-methyl folate)

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

Bicillin (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 included these drugs:

Celexa (citalopram)

Lexapro (escitalopram)

Zoloft (sertraline)

Remeron (mirtazapine)

Buspar (buspirone)

Ativan (lorazepam)

Valium (diazepam)

Clonazepam

Seroquel (quetiapine)

Risperidone

Zyprexa (olanzapine)

Benadryl (diphenhydramine)

Hydroxyzine

Anticonvulsants

Gabapentin

Lyrica (pregabalin)

Baclofen