multiple chemical sensitivity Archives

Healing Our Daughter, Healing Ourselves

Published on September 21, 2023

8600 views

Healing our daughter with thiamine and vitamin K2

Our Little Tadpole

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

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

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

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

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

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

Altered Pain Sensitivity

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

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

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

Severe Reactions to Triggering Substances

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

Below are the symptoms that we have been navigating.

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

Our Journey to Healing Began With Vitamin K and Thiamine

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

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

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

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

My Big Takeaway: Healing Requires Resolving Nutrient Deficiencies Dependencies

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

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

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

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

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

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

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

Our brightest lights are ever so vulnerable.

We Need Your Help

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

Yes, I would like to support Hormones Matter.

This story was published originally on August 19, 2020.

Decades to Diagnosis: What the Heck is Wrong with Conventional Medicine?

by R K

Published on March 26, 2018

4564 views

My first missed diagnosis was Conn’s Syndrome (primary hyperaldosteronism). It took 15 years of medication resistant hypertension, eventual loss of potassium, muscle cramps and fatigue before I was finally properly diagnosed.

My second missed diagnosis was Late Stage Lyme. This one took 20 years to finally be discovered.

Did having one make the other worse, enable the other to make symptoms more severe? That will never be answered, but perhaps, with my story others may see themselves and understand the current medical system does not have the answers.

The Beginning: Reactions to Medications and Environmental Allergies

In 1988, on Labor Day weekend, I developed a terrible sore throat. My son had strep so I went to Urgent care. The quick strep was negative and backup culture was done. I was given Keflex. I tolerated it okay but was told to stop after culture came back negative several days later.

Started developing nasal obstruction and increased fatigue. Noted reactions to chemicals which never had happened before. The PCP thought sinus infection, prescribed a Sulfa drug which worsened symptoms, then Ceclor. I had already developed a Penicillin allergy years before. I ended up in the hospital with laryngeal edema but not before several trips to the PCP and an ENT (ear nose throat) office with loss of voice, shortness of breath, BP off the charts, high pulse rate. I was told this was anxiety, and yet in ER after an IV dose of Solu Medrol symptoms ceased. I was patted on the hand by an ER physician who knew me. You see, I was an RN working in that facility since 1973 but still treated like I was making things up.

Once in the hospital I was put on prednisone and seen by an allergist who said I had angioedema. The PCP was clueless on that but followed instructions of allergist. I was in the hospital for three days then on Prednisone for 6 weeks.

Once I started tapering prednisone the symptoms returned. I developed bronchospasm, which I never had before. I was given an albuterol inhaler. The fatigue was horrible and reactions to chemicals continued. I lost my sense of smell and was swollen all the time.

My PCP told me I would have to learn to live with it. I had 2 small children, was working part time and was only 36 years old. I was not going to accept that fate.

I did some research and found an Environmental Allergist through reading “The Yeast Connection”. This made sense because I had been on massive antibiotics and steroids.

In 1990, I was finally diagnosed with chronic fatigue syndrome. (I would later find it was really Lyme disease). Through the use of a macrobiotic diet for 6 months, Nizoral, a targeted supplementation and provocation/neutralization allergy injections, I did get most of my life back. It took all of 1989 to slowly regain function and control allergies and reactions. For years following I did stay on a clean diet, continued to ration my activities, if I worked and did nothing else, but I thought that was normal. I continued with treatment by the Environmental Allergist for most care including her allergy injections, using PCP only for routine physicals and eventually hypertension monitoring. However, the allergist also continued to ignore my inability to control my BP even with good diet, weight, exercise and lifestyle changes.

Some Back History: Longstanding Hormonal Issues

I always had been what I call “hormonally challenged”. From the time I started menses they were very irregular. I was put on the birth control pills when I first married in 1975. Those were the high estrogen pills. I developed a deep vein thrombosis (DVT) in my right leg, most likely due to the pill.

Once off the pill, I had no menses for a year. I was seen by an endocrinologist. She told me I had high DHEA-S and testosterone and diagnosed me with Polycystic Ovarian Syndrome. (I now know the high DHEA-S was most likely adrenal related, and miraculously, testosterone is now normal, no PCOS.)

I wanted to start a family, had been off the pill for a while, once menses resumed they were still irregular. I saw a fertility specialist who prescribed Clomid. The first month did not work. Doubled dose and the following month and I was pregnant. He also agreed with the PCOS diagnosis.

My pregnancy was rough. I was very swollen all the time. I was fortunate that I did not have to work, so I did not. I had a healthy delivery in September 1980 and for the first time, felt great after. I had regular menses, although a 40 day cycle, no body edema, no effort to hold a good weight.

My husband wanted a second child and this time I became pregnant easily. It was not a difficult pregnancy. In October 1982, I had a normal delivery but then everything started falling apart. I had a tubal ligation after 2^nd delivery and went back to work per diem once the baby was 1 year old.

I developed allergies that I had never had before. I would hold 8 lbs of fluid overnight, would sometimes have to urinate several times during the night. I would suffer horribly with my menses. I had pelvic pain that was often unbearable during my periods, lots of clots, very heavy flow. I was told to live with it. I took high doses of Naprosyn (PCP recommended) to try to relieve pain. Big mistake! I had a GYN referral and was told it was endometriosis. I had exploratory laparoscopy , the surgeon said I had a “very small area” of endometriosis that they cleaned out. It did not help.

Then came 1988 and the big crash as discussed above.

After recovering somewhat from the angioedema, allergies, chemical sensitivities and continuing to live with a fairly clean lifestyle, working only part time, never more than 2 days in a row on a Pediatric Unit, I had a manageable life for a while. However, over time I developed neck and shoulder pain, muscle weakness, episodes of extreme fatigue, headaches that put me in bed for a day in the dark, unable to move. My back would “go out” with no warning, with no provocation. It would feel like I had been cut in half and I could not walk. Sometimes muscle spasms would occur.

Essential Hypertension or Something Else?

I saw multiple physicians and other medical providers over many years. I was diagnosed with essential hypertension at age 40 with no testing done because had family history of hypertension. I had an HMO at the time so I needed primary care practitioner (PCP) referral to see specialists. My PCP determined he wanted to treat the hypertension by himself. This was in the early 1990s. Multiple drugs were tried over many years and I had side effects with every one except a half dose of Maxzide. Even with the Maxzide my BP often was 220/110. Had frequent angioedema episodes, seemed to be related to menses. Had to give up the hospital job, went to work in a family practice office for a NP who became my Primary Provider. Most of my reactions involved generalized body edema; some were swelling of face, hands and feet (angioedema), others included hives and an increase in my blood pressure (BP) and pulse. It would take me a month to clear from these drug reactions.

My previous PCP refused to send to a nephrologist, never did any lab studies for the resistant hypertension and never even had an EKG. I had developed a murmur I never had before. No appropriate testing was ever done by him. During that same time period I developed a swollen, painful left knee overnight in July 2004, no injury. He did a standing x-ray and told me everything was normal. By December, when the knee still periodically swelled, I had to beg him for an orthopedic consult. His statement was “why, you won’t do anything they tell you to do anyway.” He had been my PCP for 18 years, thought he worked in my best interests, obviously not.

The Revolving Door of Incompetent Doctors

The new PCP needed to address multiple issues, but chose first to address angioedema with allergists. Over time, I saw three different allergists. None were able to really help other than telling me I had definite birch and ragweed allergies. I did an elimination diet and found Sunflower and yellow dye allergies. Nothing more.

When I finally saw an orthopedic doctor, he aspirated my knee, did an MRI and ordered a Lyme ELISA. The Lyme test was negative so it was never thought of again.

MRI showed chronic synovitis, a macerated meniscus, a softened patella, a moderate amount of fluid. Nothing was suggested except to try glucosamine and come back if felt the need. He told me it was osteoarthritis.

I was sent to a prominent local Rheumatologist who, without any physical exam and little history taken, pronounced I had Fibromyalgia and Hypermobility. He also happens to get grant money to study fibromyalgia. He wanted me to try Provigil, I refused.

If I only knew then what I know now!

Things just kept going downhill from there. Finally, with begging, I was referred to a nephrologist. Prior to that my PCP again wanted me to try different BP meds, one of them being an ACE inhibitor. I had angioedema from an ARB (angiotensin receptor blocker) and so was not willing to take the ACE which is known for causing angioedema. I was also doing a DASH (Dietary Approach to Stop Hypertension) diet, had lost weight (110 lbs), exercised when I could but was still labeled “non-compliant”. As my serum potassium levels kept dropping, something that had happened with previous PCP but reported to me as “normal”, I was accused of eating “strange” diets, one word short of accusing me of being bulimic.

After Fifteen Years a Diagnosis: Conn’s Syndrome

The Nephrologist came to the rescue. In one appointment he actually listened to me, ordered a few simple blood tests which showed I had excess aldosterone. Then he ordered a CT scan which showed an adrenal adenoma on the left side. Next, I was fortunate that our healthcare facility had an excellent interventional radiologist who did Adrenal Vein Sampling (AVS) which showed the excess aldosterone was definitely coming from the left adrenal which had the adenoma. Finally a diagnosis, Conn’s Syndrome, not noncompliance. Drugs routinely used to treat hypertension would not work. Only Spironolactone is indicated (Inspra is another drug for hyperaldosteronism but many insurance companies do not cover it). I had been put on Spironolactone before, it made me very dizzy, nauseated and my BP went up with it, no one can explain why.

I was sent to Endocrinologists in Syracuse who are associated with the Joslin Center. They had to call the Mayo Clinic where they have a Dr. Young who researches Conn’s Syndrome. He went over my testing and said I was a candidate for surgery. I had a laparoscopic left adrenalectomy October 2006. The surgeon was great, the post op care was not. I learned to research everything myself. After the surgery, I would no longer need supplemental potassium, and yet, it was prescribed. My remaining adrenal would be weak in function because the other had overpowered it so I should consume lots of salt for a while, no one mentioned that. I had an arterial line in surgery to monitor my BP yet post op it was rarely taken. I basically took care of myself.

I did okay for a few months. I was not as fatigued and did not have the constant muscle cramping and weakness I had before surgery. My blood pressure had normalized, as had the potassium.

It did not last for long.

Another Decline Triggered by a Mandatory Vaccine

All the symptoms I had in 1988 started to return, slowly at first. I had a mandatory Tdap injection as I was working in a pediatric office. I caught a virus going around the office and never recovered. Symptoms intensified. Chemical sensitivities returned, lost sense of smell and taste, rapidly began to lose weight. Seemed to be reacting to everything. I had another 5 day course of prednisone which sent me into neurological symptoms that I had never had before. I could not complete a sentence. I could not tolerate music or TV. It seemed like I was outside my body. I was exhausted but could not sleep. At most I would be in that twilight sleep, never a deep restorative slumber. I would get buzzing sensations throughout my body. I developed food aversion. I could no longer function with activities of daily living and had to quit working completely after cutting back hours to practically nothing. I felt like I was outside my body looking at a stranger from up above.

Immune Function Diminished by Undiagnosed Lyme

We left the HMO after the Conn’s Syndrome experience where they had denied my ability to go to centers more familiar with adrenal issues. They claimed any endocrinologist could handle it, they can’t. We joined a PPO where I could go to any doctor without referral and could even see providers out of plan

Over the next nine months, I saw two more allergists, another nephrologist (the one who diagnosed me had suddenly left town overnight on a weekend; we think the local medical cabal drove him out), a female OB/GYN who advertised she balanced hormones (didn’t even try, told me to go to an alternative provider), and an ENT who told me I needed my sinuses reamed out (I ran).

I changed PCPs again. The one I went to post surgery told me I had become too complicated for her and dismissed me from her practice. The next PCP was new to practice, listened to me and originally stated “perhaps your remaining adrenal is weak and overwhelmed by an infection” which turned out to be right on but at the next appointment the powers that be must have gotten to her because it became “blame the patient” and “you need antidepressants”. My symptoms and suffering were ignored.

By this time, I could no longer drive. My husband had to take off from work to take me to appointments. It was getting old and I was not getting better. Since I could barely breathe through my nose we found an alternative ENT in New York City. He did lab testing, looked at the CT of my sinuses the other ENT said proved I needed surgery, said it was not sinusitis and that surgery would not help. I had inflammation but not an infection. He tried to treat for yeast and tried to support my adrenal, as he did saliva testing that showed I was borderline low function. If you look up adrenal insufficiency many of my symptoms were textbook. But the endocrinologists in Syracuse said in no way was it possible any of my health issues were related to the removal of one adrenal, then they dismissed me.

I was so ill that the thought of a drive from Central New York to New York City was overwhelming. I had always been a computer whiz but now could barely use it. My husband sat with me and we searched for another alternative doctor similar to the environmental allergist who had treated me before. She had since been driven out of NY State and did phone consult only, expected your PCP to work with her which would never happen in my area.

A doctor’s name popped up at the top of the list that I think God put there. We were able to get an appointment that next week due to a cancellation. This doctor holds his Family Practice certification, is a functional medicine, integrative medicine MD. He does not deal with insurance companies and all of their rules. Because I could go out of network, I did get partial reimbursement but treatment was expensive. When you are so sick you are willing to pay anything and do anything to improve.

He carefully reviewed my medical history, the recent testing I had done and ordered more specific testing. It turns out I had Lyme, most likely since 1988, and the adrenal issue had thrown the entire endocrine system off. I also had secondary hypothyroidism. A small dose of Armour thyroid was given and the angioedema episodes disappeared. If you research, you will see that low thyroid function and angioedema often go hand in hand. Why don’t conventional doctors know this? Also, the late stage Lyme disrupts the HPA axis function. In reality, I was a hormonal mess. Plus, by this time I was in perimenopause, lucky me I didn’t become menopausal till age 59. The lack of that hormonal fluctuation has helped quite a bit.

Treatment and Partial Recovery

With the use of topical progesterone, an herbal adrenal support preparation in addition to Armour thyroid and Lyme treatment, all of my symptoms began to disappear. It was not overnight, but there was slow and steady improvement. Also found and treated Vitamin D and iron deficiencies. I later found some genetic issues that show I do not detoxify well, which explains why I always had to take small doses of any medication, including supplements. It took three years of Lyme specific treatment to note sustained improvement.

Unfortunately, since so many issues were ignored for so many years I have permanent damage. My left knee is wrecked, I am not willing to do a replacement as we don’t know if Lyme bacteria are still present. A surgery could set things off again. I have multiple herniated discs. Lyme bacteria destroy connective tissue. I still fatigue more easily than a “normal” person. After stabilizing, I started with a personal trainer which helped build stamina and muscle. Lyme causes terrible muscle wasting. I still use supplements to support my genetic variants and herbal preparations on a rotation basis to manage any remaining infection. Because of my history of drug allergies use of antibiotics was not possible.

I have dealt with high fasting blood sugars since the adrenalectomy. The Integrative MD has helped me with this issue too without the use of meds.

Lessons Learned

So much life wasted, so much suffering, so much ignorance in the medical community. To this day the doctors in the area of central New York, where I formerly lived, call the doctor who successfully treated me a quack. Instead of learning from all I went through my providers decided to dismiss me, to call me difficult. My last PCP watched my progress, did learn from my experience then left practice because she no longer felt the system was allowing her to help her patients.

I have since moved out of New York state, something we wanted to do years ago but my health would not allow. I have no PCP at the moment. It is almost impossible to find someone who does not insist on following guidelines to the letter. I do not fit in a box. I kept myself alive by refusing to follow standard practices. If people learn anything from this, it is “you MUST advocate for yourself”. You know your body. We are all different, and therefore, assembly line medicine does not work.

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.

Fluoroquinolone Poisoning: A Tale from the Twilight Zone

by Kristin Weber

Published on June 1, 2015

6172 views

Imagine the following scenario: you’re sick with an ailment that prompts you to visit your doctor. During the exam you’re found to have a bacterial infection, so you’re prescribed a course of antibiotics. You take your medication and experience very minimal side effects. Your infection clears up, and you return to normal life. We’ve all been there many times, I’m sure.

In another version of this scenario, perhaps your antibiotic gives you problematic side effects such as headache, nausea, stomachache, or diarrhea. Maybe these ailments are troublesome, but you endure them while finishing your prescription. After all, side effects go away, right? Chances are, most of us have experienced this as well.

Now try to imagine a third scenario. It’s long, but I implore you to read it.

Adverse Reaction: The Fluoroquinolone Nightmare Begins

You visit your doctor for a suspected UTI, and she prescribes Cipro, an antibiotic in the Fluoroquinolone (FQ) family, which you are to take for a week. Three days after finishing, you abruptly experience an explosion of symptoms. You get the worst headache of your life. You become confused and tongue-tied during a simple conversation, but you believe you’re simply tired, so you go to sleep. You wake up the next morning and feel burning, stabbing pains everywhere, and numbness and tingling in your hands, feet, and face. Your muscles twitch. You have widespread body pain, and hear audible crackling of your joints every time you stretch or take a step. You have trouble walking, and your ears ring. Your mind is dulled, and you struggle to follow conversations and recall words. You feel a vibrating sensation from deep in your bones, like your body has been plugged into an electrical outlet.

Imagine that you’ve saved the package insert from your antibiotic, so you read it to see if perhaps your symptoms could be related to the drug. (You remember feeling mild but strange sensations in your arms while taking Cipro the week before, but didn’t think much of it at the time.) You’re shocked to find the following paragraph:

Ciprofloxacin should be discontinued if the patient experiences symptoms of neuropathy including pain, burning, tingling, numbness, and/or weakness, or is found to have deficits in light touch, pain, temperature, position sense, vibratory sensation, and/or motor strength in order to prevent the development of an irreversible condition.

An irreversible condition?

In addition, the following words and phrases stood out:

Tendon and joint damage
Joint stiffness
Achiness
Muscle weakness
Tendon rupture
Tendonitis
Central nervous system events
Nervousness
Agitation
Insomnia
Anxiety
Adverse reaction
Contact your doctor

Oh my god. Surely you can’t be having an adverse reaction to a drug, can you?

You open your laptop and type the words “adverse reaction Cipro” into google. You’re shocked to find websites detailing the very symptoms you’re suddenly experiencing. You find YouTube videos warning people of the dangers of Fluoroquinolone antibiotics, and a support group with over 3000 members. They’ve named the condition “Fluoroquinolone Toxicity”. They call their cluster of symptoms being “floxed”, and themselves “floxies”. Someone wrote a book describing what ONE Fluoroquinolone pill did to his wife, prompting extensive research into pharmaceutical industry corruption.

Worse, you learn that no viable treatment exists for this toxicity. People become guinea pigs trying various supplements and healing modalities in a desperate attempt to find relief, because no one else is helping them. No one believes them. Not doctors, sometimes not even friends and family. They are sick and suffering for weeks, months, or years. Some suffer for decades. Some commit suicide.

This can’t be happening.

You call your doctor’s office, relay your symptoms, and inform them of your adverse reaction to Cipro. A nurse calls back and advises you to drink eight glasses of water that day to help flush the medication from your system, and to follow up with your doctor.

The next morning you march into the doctor’s office with your wobbly, burning legs, feeling even worse. You mention the Cipro package insert and the online support group with 3000 people experiencing the same symptoms as you, but your doctor doesn’t believe Cipro caused your problems. She thinks you have Guillain-Barré Syndrome, so she sends you to the ER. The ER doctors don’t believe you, either; they think you have an anxiety disorder.

“The drug left your system days ago; it can’t be causing those symptoms.”

You go home and post a message to the online support group. “My doctor doesn’t believe me even though I showed her the drug insert listing the symptoms of an adverse reaction.” People console and advise you, thus marking the beginning of several friendships with a diverse group of strangers united in their suffering.

After a few days you’ll return to the first doctor, who will switch her focus to either Multiple Sclerosis or Conversion Disorder, a fancy name meaning “yes, you have real symptoms, but they originate in your mind.” She’ll refer you to a neurologist to rule out MS and send you on your way.

You’ll keep returning to doctors seeking help with your issues, or even a simple validation that Cipro wrecked your health. It will never come. You’ll feel poisoned, like you’re on the brink of death with over 40 symptoms, yet all your medical tests will be normal.

“Cipro doesn’t cause this ‘syndrome’,” doctors will say.

They’ll offer Prozac to treat the mental disorder they believe you have.

Now imagine spending three entire years dealing with this, suffering in ways you never imagined possible, every day bringing a new version of misery. Some days you can’t walk without pain. Some days your hands and feet burn all day. Some days a migraine slurs your speech, and makes you feel cross-eyed with distorted limbs, and joints twisted up like a pretzel. Some days you feel electrocuted; other days fatigue leaves you with leaden limbs, a supreme effort required for every move. Some days you’ll experience all of the above, and then some.

Some days you’ll lean on furniture at work – sick, exhausted, and shocked that you haven’t collapsed onto the floor yet. Some days you can’t bring yourself to go to work, so you stay home. But resting does not provide relief. Nothing provides relief.

Because Cipro caused insomnia, you’ll be unable to sleep more than a few hours a night for weeks, months, years. A six hour stretch will become a rare miracle. Some nights, when you do drift off to sleep, you’ll be abruptly awakened by loud zapping noises and sensations in your head. This may happen as many as 20 times before you finally succumb to broken sleep.

Environmental Triggers are Real: Post Fluoroquinolone Reactions

One day you’ll realize that, in addition to the symptoms Cipro caused, you are also reacting to environmental triggers. You’ll remember that your symptoms worsened after dying your hair and moving to a newly-constructed workplace with its fresh carpet, paint, and building materials. You’ll recall the times you arrived at work with your normal Cipro symptoms, but also developed dizziness, nausea, confusion, a stuffy head, burning lungs, and more within half an hour and how those symptoms would ease on the drive home.

You’ll remember the time you felt like you were having a stroke shortly after applying a new lip balm – how you had to steady yourself on your boyfriend’s arm so you wouldn’t fall while walking through the grocery store. You’ll realize you now get a headache every time someone smokes a cigarette nearby, which fades about 20 minutes afterward. In hindsight, you’ll recall several other examples which point to environmental triggers, finally understanding the cause of some of your misery.

The environmental component will also explain why you’ve been unable to tolerate medications to ease your suffering: ever since you took Cipro, your body now reacts to them like foreign invaders, the same way it reacts to other chemicals. Advil now gives you stabbing joint pains and flares your neuropathy. Tylenol makes you drowsy. Both pain medications paradoxically cause headaches. Zantac causes mental confusion and agitation – side effects “typically only seen in severely ill, elderly patients”, according to the package insert. Your days of over-the-counter relief for common ailments will be over.

You’ll post a message to your support group for commiseration, and someone will respond, telling you she developed Multiple Chemical Sensitivity (MCS) after her adverse reaction – that many floxies have become sensitive to foods and chemicals, and must avoid their triggers in order to feel well. You’ve never heard of MCS, but you’ll be relieved to learn of possible tangible ways to finally ease your symptoms. This relief will be short-lived, however, once you consult your doctor.

“I’ve finally figured out the reason for some of these terrible symptoms,” you’ll explain. “Every time I go to work I get a headache, dizziness, and nausea, and my neuropathy flares up. I think I’m reacting to the new paint, carpeting, and drywall materials. Plus, I feel even worse when t-shirts are printed – I think I’m reacting to the chemicals in the fumes.”

Your doctor will stop you and put up his hand. “There’s no such thing as chemical sensitivity,” he’ll say. “If you continue down this road, you’ll be labeled mentally ill.”

You’ll plead with him. “How can that be? I know this is real; I have countless examples from before I even learned what MCS was.”

“You should stay off the internet,” he’ll advise. “There’s a lot of false information out there.”

“But this was happening to me long before I ever connected my symptoms to chemical exposure; reading about it didn’t cause delusions – it confirmed the reason I feel sick all the time.”

You’ll tell him about the day you were working with the outside door open and suddenly developed an instant headache and became very dizzy. You couldn’t understand why, until a few minutes later when a landscaper spraying herbicide walked by.

“How could MCS be all in my head when I was completely unaware a chemical was being sprayed nearby? It’s not as though I smelled it, became anxious, and developed anxiety-related symptoms. The chemical was odorless and I had no idea why I was suddenly ill until I saw the landscaper.”

But your doctor will remain unconvinced. Nothing you say will matter. He will never believe Cipro harmed you, or that you developed MCS. You’ll keep returning to this doctor for months, hoping in vain that one day he’ll believe you, or that he’ll somehow be able to help you. That day will never come.

What will happen, instead, is that you’ll develop PTSD from the trauma of suffering acute, daily illness and having medical professionals – the people in charge of your healthcare, the people you always thought would help in times like these – completely dismiss your suffering as psychological. The post-traumatic stress will become so bad that you won’t be able to make a doctor’s appointment over the phone anymore without shaking and bursting into tears.

You’ll learn to minimize your adverse reaction to Cipro with new doctors, and to never call MCS by name anymore. You’ll say, “I tend to get unpleasant side effects from drugs,” and “Certain foods and strong scents give me migraines.” Because by this time, you’ll have realized that no standard treatment exists for MCS – just like Fluoroquinolone Toxicity. Many people sink tens of thousands of dollars into nutritional therapies from integrative and alternative practitioners without seeing much improvement in their health. Or if they do, they must still practice strict avoidance of chemicals in order to maintain their health.

But you don’t have tens of thousands of dollars, and insurance won’t cover tests and treatments for a health condition they don’t believe exists. You’ll realize with horror that there is nowhere to turn.

Dark Night of the Soul

Your health will worsen in the coming weeks and months. Nothing will provide relief except avoiding triggers, which will be nearly impossible (and never will the relief be 100%). Your favorite foods and drinks will cause unbearable symptoms. Walking by a person wearing perfume will cause an instant migraine. A trip to the grocery store will ruin you for the rest of the day with all the ambient chemicals from within the store, as well as people’s personal care products and the laundry detergent residue lingering on their clothes.

You’ll suffer through colds and other illnesses with no relief whatsoever, because you won’t be able to take medications. Sleeping your misery away won’t even be an option, because you’ll still have insomnia, and Cipro destroyed your ability to nap during the day.

Cipro destroyed everything.

Working will become unbearable because of the constant exposure to chemicals, but you won’t be able to quit because you have a child to care for. You’ll ask your boss to instate a “no perfume” policy for the workplace to help ease your misery, but he won’t. You’ll begin to wear a mask to filter chemicals, which will make people look at you like you’re a crazy germaphobe. But wearing the mask is the only way you can continue working while minimizing the urge to someday drive off the embankment of a highway to your death, because you just can’t handle being sick for another second and you have to make it stop.

You’ll have nightmares about being forced to take Cipro against your will, or forced to breathe Lysol while people tell you it’s safe, and can’t possibly make you ill.

Once night, you’ll dream you’re wandering through a graveyard, desperately looking for a place to sit and relax, but every time you find one you’ll be forced to get up and move somewhere else. This will continue for hours, until you are so weary you can barely move. You’ll awaken, and curse your inability to rest, even during sleep. Then you’ll realize this dream was a metaphor for your new, post-illness life: a never-ending, elusive search for help and comfort within the graveyard of your life. Because there is no outside comfort anymore…and nowhere to turn for help.

Your life, seemingly overnight, will resemble an episode of The Twilight Zone. While you’re suffering you’ll watch the whole world carry on as normal, with people either in outright denial of your plight, or enjoying their lives in blissful ignorance. You’ll hear of people taking fluoroquinolones with no adverse effects, not realizing that people can take several prescriptions before reaching a threshold of tolerance that could render them just as ill as everyone in your support group. Not realizing that FQs can cause delayed reactions – symptoms that don’t show up for days, weeks, or months after the last pill is swallowed. You’ll try to warn people, but they won’t believe you.

Nearly every single day someone in your FQ support group will mention a friend, relative, or stranger they met in public who developed mysterious health ailments doctors couldn’t diagnose, right after taking Cipro, Levaquin, or Avelox. People who didn’t initially connect the onset of their symptoms to antibiotic usage until someone encouraged them to check their medical records.

New people will join your support group every single day telling a similar version of your story, and met with a similar level of disbelief from people in their lives. Everywhere you turn, you will hear (or hear of) the following being said:

“Cipro doesn’t cause those symptoms.”
“Prescription drugs can’t do that to people. Something else must be wrong with you.”
“You’re Googling too much. Stay off the internet.”
“Your support group members are probably exaggerating.”
“Your joints hurt? That’s called aging.”
“The drug is out of your system within a certain amount of hours. There’s no way it can cause damage after that time.”
“If fluoroquinolones were that bad, they wouldn’t be on the market.”
“There’s no such thing as chemical sensitivity, or environmental illness.”

You’ll long to shout warnings from the rooftops about what happened to you, and what you see happening in your support groups every day, but you won’t be able to because you’ll still have PTSD, and talking about the health experiences the whole world seems to deny will make you sound like a paranoid, conspiracy theorist. So, you’ll stop talking about it, and suffer mostly in silence, pretending things aren’t so bad.

Except…things are bad. Every day will be torture, physically and mentally. Every day you’ll want to die, but you’ll cling to life instead, weary and miserable, not quite understanding how you manage to endure this level of illness every single day. Not quite understanding how anything could ever be okay again. But you won’t be able to exit this world, because your child needs you – a child who you’ve lost the ability to effectively parent, or enjoy the company of, because of a pharmaceutical-induced illness. A child who sometimes draws angry-looking pictures of you using your laptop and writes, “Mommy is always on the computer”.

“I’m so sorry, honey,” you’ll say. “Mommy is sick and is just trying to figure out how to get better.”

Your small child will grow into a young adult. Much later, you’ll grieve the time you lost with him while in a sickly fog, struggling to work and maintain a semblance of a life. You’ll find yourself making post-death requests to the universe, just in case there is an afterlife, to please let you come back and spend that time with your child. Please let you immerse yourself in those precious, fleeting moments, and enjoy and love him without the weight of illness and misery and constant worry that overshadows any joy life holds.

Every day you’ll miss your former, healthy self. You’ll reread emails you sent people before you got sick, and mourn the person who made quick-witted jokes and used words you cannot recall the meanings of anymore. You’ll think about how the drug altered your once-sharp mind like a chemical lobotomy. You’ll wonder if you’ll ever be okay again.

Post Fluoroquinolone Healing: Unexpected Gifts

One day you’ll decide you can’t endure another second of suffering. You’ll say to yourself, “If I’m going to be sick every last day of my life, I’m going to find some level of happiness again, no matter how minuscule.” So, you’ll begin grasping for anything. One day you might search the internet for humor and laugh a little bit, even though your hands and feet burn and you can’t think straight that day. Or you might notice the color of the trees and the sky on your way to work, and feel struck by their beauty. You’ll enjoy conversations with your child even while you’re sick. You’ll watch funny or uplifting movies.

You’ll begin to learn that happiness can exist alongside your pain, that suffering doesn’t always have to negate your joy. Sometimes, yes, but not always. Because while you hurt, you also live and breathe. You are still alive. You can still notice the beauty in your surroundings, even when your internal world feels unbearable. You can still laugh, even if the next moment leaves you in tears. And you can still love: your family, your friends, kind people in the world…even yourself. Especially yourself. You may feel as though the world has cast you aside, your life in shambles, but you still matter. You are still a person of worth.

Then, a miracle will occur: like a phoenix rising from the ashes, little glimmers of your long-lost self will begin to return. You’ll remember who you are beyond this sickly, lost person. You’ll realize that beyond your suffering lies an untouchable spirit that will always exist. That illness cannot break you. It may seem to at times, but it cannot change who you are at your very core, no matter how much pain or suffering your body is experiencing. This thought will comfort you in inexplicable ways.

You’ll learn that when there is nowhere left to turn, you can always turn within. That no one can take that away from you.

You’ll begin to forgive the people who don’t believe you, doctors and all, for you’ll remember that we all do the best we can with the information we have. You’ll realize that perhaps people can’t face the truth because it will alter the foundation they’ve built their lives upon, or destroy the sense of safety that enables them to continue living in this harsh world of ours. After all, medications are not supposed to cause this level of harm. And when you think about it, MCS does sound like a psychological illness, even though it’s not. But you’ll forgive the people who doubt you, because you may not have believed any of it either, had it not happened to you personally.

One day you’ll realize that gifts have arisen from your struggle – that, ironically, the worst experience of your life allowed you to bear witness to the best.

First, you’ll notice how the people in your support groups exemplify the inherent good of humanity by offering support and friendship, and sometimes even monetary assistance to members in crisis, often persevering through debilitating symptoms to help each other when no one else will. This is a stark contrast to the corruption, greed, and lack of compassion displayed by the pharmaceutical companies who shattered all of your lives. You’ll see how their corruption indirectly bred a deep empathy and compassion among their victims, their darkness transmuted into a light directed toward each other, as well as others who have no idea they could someday fall victim to this level of suffering. To the degree that your ordeal destroyed your faith in humanity, your support group members will renew it.

The second gift will be in recognizing the lessons which surviving hardship brought you – lessons about perseverance, inner strength, self-worth, confidence, humility, compassion, and forgiveness – and realizing you wouldn’t trade the growth born from these lessons, even if it meant reliving your health struggle all over again. (Though you will still long to have learned them less painfully, would that have been an option.) You’ll realize that, paradoxically, your isolating, alienating illnesses indirectly revealed your underlying connection to everyone you share the world with. You’ll know that although you wouldn’t consider illness a friend, it has certainly been one of your most powerful teachers.

Gradually you’ll begin to see better days, and eventually return to an acceptable level of functioning, even though you’ll probably never return to your former state of health. Your experiences will haunt you, though, following you around like storm clouds, threatening to erupt again, sending you back into the depths of hell. But you’ll fervently hope, should that someday occur, that you’ll once again survive.

One day, you’ll even tell your story in spite of the traumas that arise during the telling, knowing that giving voice to your experience may prevent the suffering of others, and add to the chorus of voices fighting to ultimately stop the rampant poisoning of people every day – people who are being hurt and tossed away by chemical and pharmaceutical companies as though their lives are meaningless.

You’ll know that saving even one person from the suffering you endured will be worth the potential disbelief, and even ridicule, that may come your way through the telling of your story. You’ll know that you no longer need anyone else to validate your illnesses, or any of your experiences, for that matter. Because, ultimately, your health ordeal has taught you to stand in your own truth with confidence – no matter what others believe, no matter how they might judge you.

Besides, if you’re strong enough to survive not one, but two invisible, unacknowledged illnesses, you’re strong enough to survive anything.

A Dire Warning

I know…you can’t relate to this third scenario, can you? Unless you’re a member of one of my support groups, you probably can’t. But thousands of us can, and we’re growing in number every day. We each have our own version of the same story. Because we know our stories could someday be yours, we’re fighting tirelessly in a variety of ways to bring awareness to the potentially devastating effects of fluoroquinolone antibiotics.

In fact, since I began writing this, over 40 news reports about fluoroquinolones have sprung up. Word is finally getting out.

My hope in sharing my story is that people research the medications they are prescribed, especially antibiotics, and never take a fluoroquinolone (Cipro, Levaquin, and Avelox) unless all other options have been exhausted. Fluoroquinolones are the atomic bombs of the antibiotic world. None of the other antibiotics on the market can cause permanent peripheral nerve damage and tendon rupture, not to mention the cluster of symptoms I described above. These adverse effects are not as rare as pharmaceutical companies claim. Not only that, but the FDA is not adequately protecting consumers from this multi-billion dollar, profit-driven industry, whose aggressive pursuit of such profits can lead to corruption. Were this not the case, I wouldn’t be telling this story today. Therefore, we need to take more responsibility for our own health and safety instead of blindly trusting the information pharmaceutical companies feed to the FDA and our doctors, because sometimes this information is misleading.

The problems within our modern medical paradigm are complicated and multi-faceted. I wish I knew how to fix them, but I do not. I do know, however, that my individual story is a symptom of major flaws within a system in desperate need of healing. Corporations should not be allowed to destroy people’s health and lives while denying or minimizing it, leaving them to suffer while watching it continue to happen to others over and over again, like a perpetual Twilight Zone episode. A medical system theoretically designed to “first do no harm”, should not dismiss those suffering at the hands of this broken system and label them mentally ill. (Not that there is shame in mental illness; but there IS shame in cavalierly assigning this label while willfully ignoring the truth.) In spite of the incredible, life-saving medical advances in existence today, any system which heals some but destroys others and leaves them to suffer alone is, in fact, broken.

Despite my ordeal, I still believe in the underlying good of humanity. I know we can do better than this.

Speak Up and Speak Out

Collectively, we need to acknowledge that, for all the virtues of modern medicine, there is also a vast dark side. We need to examine the myriad of reasons this dark side exists in the first place, and actively begin to change it.

We also need to change our response to people living with mystery illnesses our medical establishment does not yet acknowledge or understand how to treat, hopefully with more open-mindedness, curiosity, and compassion instead of judgment and dismissive skepticism. Think about this: didn’t most newly discovered illnesses, at one time, begin with a general lack of understanding and acceptance within the medical world? To act as though today’s medical knowledge base is static and impervious to change via new discoveries is misguided and harmful. But every time people – especially doctors – dismiss patients with a condescending disbelief in their illness, clinging tightly to old paradigms, they are effectively halting further scientific understanding for themselves, and potentially the rest of the world as well. They are also denying vital support, empathy, and care to people who suffer.

Please, stop dismissing the people whose lives have been altered by prescription drugs, medical procedures, chemical exposures, or other illnesses which leave them on the fringes of society with little support. Perhaps people with these poorly understood, invisible illnesses are not malingerers after all, or suffering from psychological disorders. Perhaps we’re actually the canaries in the coal mine of our modern world, our plight a warning to all of humanity to please pay attention, and please fix what is broken.

After all, no one is immune. Someday you could find yourself in my shoes, telling a similar story to what feels like thousands of deaf ears, begging the world to listen before it’s too late. And I really, really don’t want that to happen to you.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow.

To support Hormones Matter and our research projects – Crowdfund Us.

multiple chemical sensitivity

Our Little Tadpole

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

Altered Pain Sensitivity

Severe Reactions to Triggering Substances

Our Journey to Healing Began With Vitamin K and Thiamine

My Big Takeaway: Healing Requires Resolving Nutrient Deficiencies Dependencies

We Need Your Help

Related posts:

You might be interested in

The Beginning: Reactions to Medications and Environmental Allergies

Some Back History: Longstanding Hormonal Issues

Essential Hypertension or Something Else?

The Revolving Door of Incompetent Doctors

After Fifteen Years a Diagnosis: Conn’s Syndrome

Another Decline Triggered by a Mandatory Vaccine

Immune Function Diminished by Undiagnosed Lyme

Treatment and Partial Recovery

Lessons Learned

We Need Your Help

Related posts:

You might be interested in

Adverse Reaction: The Fluoroquinolone Nightmare Begins

Environmental Triggers are Real: Post Fluoroquinolone Reactions

Dark Night of the Soul

Post Fluoroquinolone Healing: Unexpected Gifts

A Dire Warning

Speak Up and Speak Out

Participate in Research

What Else Can I Do To Help?

Related posts:

You might be interested in