October 2013

Open Letter to Pharmacists Prescribing Fluoroquinolones – You Know!

Published on October 31, 2013

3895 views

Dear Pharmacists,

You know about the dangers of fluoroquinolone antibiotics. You know that Cipro, Levaquin, Avelox and the other fluoroquinolones can cause central nervous system damage that can show up as anxiety, depression, memory loss, depersonalization, loss of intellect and social connectedness, suicidal ideation, etc. You know that fluoroquinolones can cause permanent destruction of all the connective tissue in a person’s body, their tendons, ligaments, fascia and cartilage. You know that adverse reactions to fluoroquinolones can be delayed and that stopping the medication will do nothing to stop its path of destruction. You know that fluoroquinolones are contraindicated with NSAIDs and steroids. You know that they should NEVER be prescribed or administered to anyone under the age of 18.

You are pharmacists. Your expertise is in pharmaceuticals. You have studied the chemical structure of fluoroquinolones and you know their effects, both good and bad. You know that they are dangerous drugs that should only be used in life-or-death situations. You know that they are over-prescribed. You know that they can have DEVASTATING adverse effects. YOU KNOW.

Yet you continue to hand them out. You continue to fill prescriptions with no more warning to the patient than a slip of paper in the bag that contains the poison that may shake their world. You tell them that their infection will go away when they take the Cipro, Levaquin or Avelox. The infection will go away but you FAIL to warn them that it may be replaced with chronic conditions that mirror autoimmune diseases, that their mental health may never be the same again, that they may never be the athletic, healthy person that they used to be.

You know that fluoroquinolones should NEVER be given to children. Yet you fill prescriptions for eye and ear drops containing fluoroquinolones for children, even BABIES. You hand poison over to a mother with a crying 11 month-old child with an ear infection, knowing that the Cipro ear drops will get rid of that child’s infection, but that it may fry their little brain. You know. And you don’t protect the children.

You say that it’s the doctor’s job to know what he or she is prescribing, but you know that they have no clue about the dangers of fluoroquinolones. They disregard the warnings of side-effects on the drug labels, thinking that all drugs have side-effects and that they all should be disregarded because the side-effects listed are arbitrary. There is nothing arbitrary about the litany of side-effects included with prescriptions of Cipro, Levaquin or Avelox. You know this to be true, but the doctors don’t. Their crime is one of willful ignorance and arrogance. They refuse to listen to anyone outside of their ranks, including you (and that’s another problem). They are ignorant, possibly through their own fault. But you are not ignorant. You know about the dangers of fluoroquinolones. You know.

Doctors may not listen to you, but you can still do something about this moral atrocity. Please, please, please STOP giving out these drugs. You are the gate-keepers. You can keep patients from poisoning themselves, or worse, poisoning their children. You can refuse to fill those prescriptions. You can tell doctors that they MUST follow their Hippocratic Oath and prescribe a safer antibiotic in non-life-threatening situations. You can ensure that all patients who walk away from your counter with a prescription for a fluoroquinolone have real INFORMED CONSENT. The Hippocratic Oath and Informed Consent are indescribably important. They are the moral bedrocks of the medical system, yet they are being disregarded. You can reinstate them in their appropriate place, at the top of the consciousness of every patient who deals with the medical system. You can and you should, yet you don’t.

You, as an individual, have the power to stop filling these prescriptions. You have the power to talk to the doctors that you work with, to inform them that fluoroquinolones are dangerous drugs. You have the power to talk to your patients and ensure that they have the information that they need to make a decision with true informed consent. You have that power. Please use it to make the world a better place.

You, as a group, have the power to change the way that all drugs are viewed. You can make sure that a protocol of careful examination and active warnings to patients for all drugs that are truly dangerous is followed when prescribing and filling prescriptions of drugs with serious side-effects. You can pressure the FDA into making sure that the side-effects listed on a drug insert are real and not arbitrary so that they are actually paid attention to.

Please be moral. Do the right thing. Please be ethical. Know that your actions have consequences. They matter. Your decision about whether or not to fill a prescription of Cipro, Levaquin or Avelox can make a difference in a person’s life.

I know that the tone of this letter is scolding. Please know that my intention is not to make you feel like a horrible person, my intention is to ask you to be a better, more empowered, more ethical person. If that is not possible, I ask you, I beg of you, please just STOP filling prescriptions of fluoroquinolones for children. They need your protection. They will thank you by living a full life without the chronic illness that plagues people who have been adversely effected by fluoroquinolones. Please, do what you can. Please do what’s right.

Thank you,

Lisa Bloomquist

Survivor

P.S. – If you’re pleading ignorance, let me ask you this question – Would you give your child a fluoroquinolone? If your answer is no, YOU KNOW.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Assisted Reproductive Technologies, Birth Defects and Epigenetics

by Chandler Marrs, PhD

Published on October 30, 2013

2675 views

Assisted reproductive technologies (ART) have grown in popularity and success over the recent decade. According to the CDC, in 2011 there were 61,610 babies born via ART, representing 1% of the US newborn population, nearly doubling ART use in just one decade. ART can be a blessing for the nearly 6% of US couples struggling with fertility issues. In the 30 years since ART began, there have been over 3.5 million children conceived using ART, many of whom are now adults of reproductive age. One wonders, what long-term, transgenerational effects might exist from ART; will those conceived via an assisted reproductive technology, also require reproductive assistance? Are the rates of cancer, especially reproductive cancers and hormone dependent cancers known to be epigenetic in nature, increased? Each of these questions remains to be addressed fully, but here is what is known so far.

The Basics – What is ART?

Assisted reproductive technologies refer to the techniques used to bring sperm and egg together in order to achieve pregnancy. The methods of assisted reproductive technologies include: in vitro fertilization – embryo transfer (IVF-ET), gamete intrafallopian transfer (GIFT), zygote intra-fallopian transfer (ZIFT), and frozen embryo transfer (FET). By far the most common is IVF- ET with fully 99% of couples using this method of assisted reproductive technology. IVF begins with intense hormone treatment to stimulate maternal oocyte production. Those eggs are removed and fertilized with the donor or partner’s sperm. In most cases, eggs and sperm are placed in a petri dish and allowed to mix freely. In some cases, additional manipulation is required and the sperm is injected into the egg. This is called intracytoplasmic sperm injection or ICSI. IVF plus ICSI appears to account for a large subset of the birth defects associated with IVF.

Early Indicators of Birth Defects with Assisted Reproductive Technologies

A 2007 study of California couples found that children conceived using ART, especially those conceived with ICSI, had a 35% increase in risk for birth defects compared to those conceived naturally. Most common among them were eye abnormalities, heart defects and malformations of the genitourinary tract. Other studies have linked ART to an increased risk major structural malformations of the heart, cleft lip and palate, esophogeal atresia (the esophogus dead-ends in a pouch rather than into the stomach where it should be) and anorecto atresia – (a malformed anal opening).

Among the few studies addressing birth defects and developmental anomalies post infancy, a Chinese study found an increase in observed birth defects in ART males as time progressed, compared to females and compared to those observed at birth. In fact the rate of observed birth defects doubled over the course of the 3 years. Similarly, a study looking at one year olds conceived via ART found a doubling of the rate of multiple major birth defects including chromosomal and musculoskeletal defects.

Long Term Consequences of ART

Studies looking at longer-term difficulties, whether health or developmentally related are few and have had mixed results, always ending with the caveat that it is unclear whether the assisted reproductive technology or the original infertility itself was to blame for the defect. There does seem to be a near doubling of the risk of some rare cancers children conceived via ART, but again the data sets are small and the risk of theses cancers in general is low.

A more recent study compared cardiac function between children and young adults conceived naturally versus those conceived with ART. What they found was striking. The apparently healthy individuals with no visible malformations who were conceived by ART had significant decreases in cardiac and pulmonary functioning by a number of parameters. There was marked vascular dysfunction of the systemic and pulmonary circulation, to which the authors of the study suggest may lead to premature cardiac morbidity at a rate similar to rates seen in type 1 diabetes.

ART and Imprinting Errors

A number of ART epigenetic studies published have assessed the risk or rate of what are called imprinting errors. Imprinting errors occur when genes are incorrectly silenced. A individual normally gets one active imprinted gene, either from mom or dad. When errors occur, they may get two active or two inactive copies. Children born from assisted reproductive technologies have an increased risk of imprinting errors compared to the rest of the population. The common conditions that arise include:

Beckwith – Wiedmann Syndrome – an overgrowth syndrome where children are larger than normal
Angelman Syndrome – characterized by severe developmental disability and seizures
Prader -Willi – a syndrome characterized by short stature, developmental delay, and compulsive eating

As with the some of the other birth defects observed with ART, those using ICSI – the forcible injection of the sperm into the egg, seem to proffer higher risks and seem to affect males more than females (or perhaps, as is the case with most research, it is the male offspring that are studied more frequently). Of note, the combination of ICSI and environmental endocrine disrupting chemical exposures is linked to trends in demasculization and potential sterility.

Epigenetics and Assisted Reproductive Technologies

Thus far the notion of epigenetic changes in children conceived via assisted reproductive technologies has been limited to research on the aforementioned imprinting errors, also called epimutations. Research on the broader consequences ART, particularly in general health and reproductive health is lacking. The exposure to hyper hormonal states common in many assisted reproductive technologies has the possibility of disrupting critical hormone pathways across the lifespan of the offspring and may impact his/her reproductive health in subtle, and not so subtle, ways. Some effects may not appear until much later in life and certainly there is the possibility of transgenerational changes as those observed with DES, dexamethasone and other hormone exposures during embryonic and fetal development. Additionally, as evidenced by the study on cardiac-pulmonary function, it is conceivable that many of the epigenetic effects will be functional in nature versus more obvious structural malformations. However, because ART bypasses the natural buffers in human reproduction that might have otherwise selected out for specific traits, it is difficult to disentangle native ‘deficits’ – those of the mom and dad – versus those directly linked to the procedure itself. Only time will tell what the effects of ART are on the health and functioning of subsequent generations.

Seeking the New Normal: A Letter to Those With Chronic Illness

by Nancy Petersen

Published on October 29, 2013

2556 views

This article was written for women trying to cope with endometriosis, but it applies to a much broader audience. Others have addressed the lack of understanding in chronic illness and one of the best is the website “But you don’t look sick” and The Spoon Theory written by the website owner, Christine Miserandino: ButYouDontLookSick.com: A community for support, education, and inspiration. Take a minute to read The Spoon Theory. It is helpful for family and friends trying to understand chronic illness and its very real impact on life and relationships.

Waiting for Normal to Return

Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking. You have been through hell pain-wise, often diagnostic-wise, and sometimes you did not get the help you needed. Life has changed because of these very traumatic and difficult episodes of pain and medical interventions. When dealing with chronic illness, nothing remains the same.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work through our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our “old self” and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.

The literature reflects the thinking of several experts in the grieving field, and I have one link posted here: The 5 Stages of Loss and Grief | Psych Central.

Chronic Illness Changes Us and Our Relationships

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life.

When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

My Story: The Way Around

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear that unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair, nor have any of the retirement about which I dreamed and planned. Actually, this was a very good lesson in: Life is what happens to you while you were making plans.

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it. I could barely even get up on the tractor when I first got it, I was in such bad shape. I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling through, which I could not do, I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

Create A New Normal

I hope I have at least given you the idea that if things don’t return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and may even require developing new tools or hobbies, or even a new life entirely. But, in time, you can do it. Let go of searching for the old normal and move on into a new way of being with whatever resources you have or can muster.

About the Author: Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.

She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.

She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.

She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.

Skin Disorders post Gardasil

by Chandler Marrs, PhD

Published on October 28, 2013

25387 views

So many Gardasil and Cervarix injured report a host of skin related disorders that appear chronic and treatment resistant in nature. The diagnoses are often incomplete, sometimes contradictory, and more often than not, and no matter the diagnosis, the treatment involves the standard topical and/or injected corticosteroid to reduce the inflammation. If there is relief, it is temporary. I have to wonder what we are missing?

My untrained hunch, from the pictures sent to me is that many of these conditions involve undiagnosed vasculitis. In some cases, the rashes may also be related to undiagnosed Hashimoto’s and other autoimmune conditions that seem to be prevalent. To offer some assistance and encourage folks to press for diagnoses, I am listing possibilities to explore with your physicians.

Acute Urticaria or Hives

We all have had urticaria or hives at one time or another, the red, blistery, itchy, rash that appears after an allergic reaction to something. The rash is generally short-lived, less than six weeks, often recurring and remitting. It can appear with angioedema or swelling and usually responds to antihistamines or anti-inflammatory medications like corticosteroids.

acute uticaria — Acute urticaria, hives.

Chronic Urticaria, Urticarial Vasculitis

When the rash last longer than six months, it is considered chronic urticaria and in many cases has a vascular and an autoimmune component. Urticarial vasculitis is a form of cutaneous vasculitis. The acute urticaria and urticarial vasculitis look similar to the naked eye but under a microscope look quite different and emerge from different causes. Non-vascular urticaria is an allergic reaction, whereas urticarial vasculitis represents an inflammation or an attack on the blood vessel wall and may be linked to systemic vasculitis and autoimmune diseases such as Lupus and Sjogren’s.

In comparison to the itchiness of acute urticaria, urticarial vasculitis itches more intensely, is painful and burns. Of interest, many patients with urticarial vasculitis also develop photo-sensitivity (sensitivity to light), joint pain and swollen lymph nodes, fever, abdominal pain, sometimes even difficulty breathing with lung and kidney problems. For color pictures of urticarial vasculitis (I could find no non-copyrighted pictures to post), click here. For pictures of cutaneous vasculitis, click here.

The lesions also may have petechiae or purpura (bleeding or bruising under the skin), common post Gardasil, documented in published case reports and among the many reasons, vasculitis should be ruled out when dealing with chronic rashes post HPV vaccine.

Petechiae and Purpura rash — Petechiae and purpura.

Urticarial Vasculitis and the Immune System

There are two types of urticarial vasculitis, normo-complement – meaning normal complement immune function (normal complement proteins found on blood testing) and hypo-complement or low immune system functioning based on a pattern of low and low plus normal complement blood proteins. Complement proteins are made in the liver and assist or complement the innate immune system by attacking pathogens. Complement deficiency predisposes one to infection and an increased risk of autoimmune diseases like Lupus and Sjogren’s Syndrome. Patients with urticarial vasculitis plus complement deficiency have more difficulty clearing the condition.

Urticarial vasculitis is mostly idiopathic or of unknown origins but is frequently associated with autoimmune diseases like Lupus and Sjogren’s, a viral or bacterial infection of the vessel wall, drug reactions, immunoglobulin disorders and some cancers.

Distinguishing Urticaria from Urticarial or Cutaneous Vasculitis Using the Cell Phone

Diagnosis of vasculitis requires a skin biopsy. Researchers wanting to increase the at-office diagnostic capability for skin related vasculitis found that viewing the rash at 10X magnification using a dermoscope allowed them to distinguish between regular urticaria and urticarial vasculitis. This was in 2004, before camera phones with high intensity magnification existed. I think we can use the same methods using the cell phone. This may give you an at home tool to use and take to your doctor’s office to encourage further testing.

The full report is published here: Surface microscopy for discriminating between common urticaria and urticarial vasculitis. Briefly, a section of the rash is covered in olive oil to eliminate the reflection and viewed under a dermoscope at 10X magnification. A cell phone, photographed at similar or greater magnification may work just as well. The photo examples are copyrighted, so I cannot publish them here, but if you suspect urticarial vasculitis, click the link above to view the sample images and the detailed instructions. Using this method, there are clearly visible differences, even to the untrained eye.

Eczema and Atopic Dermatitis

The catch-all skin disorder for rashes of unknown origin seems to be eczema or atopic dermatitis; an allergic reaction, characterized by dry scaly patches, that are itchy, sometimes oozy and often overly sensitive to internal allergens as well as external irritants. Individuals with atopic dermatitis or eczema often also have asthma, hay fever and food allergies. Treatment is focused on re-hydrating the skin and reducing inflammation.

Hashimoto’s and Celiac or Gluten Sensitivity Rashes

Hypothyroid and autoimmune thyroiditis or Hashimoto’s is common in this population. Anecdotal comments have indicated a degree of gluten sensitivity as well. A rash associated with these condition include the celiac rash, a blistery, itchy rash that appears when one eats foods with gluten. The rash can appear anywhere, but is usually confined to the buttocks, knees, elbows, back and scalp.

Hashimoto's Celiac Rash — Hashimoto’s, Gluten Sensitivity, Celiac Rash

Lupus Rash

Again, anecdotal reports suggest Lupus may be common in this population. Lupus is an autoimmune condition that attacks multiple organs including the skin. Symptoms include joint pain, fatigue, lymph node swelling, and when attacking the skin, a specific set of rashes appear: the butterfly rash on the face, the cutaneous rash and discoid rashes on the legs. For a slideshow with images, click here.

Butterfly rash - Lupus — Butterfly rash – Lupus

Discoid rash - Lupus — Discoid rash – Lupus

Testing for Lupus includes a positive antinuclear antibody test and increased erythrocyte sedimentation rate.

These are among the rashes and vascular conditions that have crossed my desk in communication with post Gardasil/Cervarix patients and parents. I am not an expert in these conditions and so this offered only as suggestions for inquiry. If you suspect a vasculitis or any of the conditions listed here, please read the linked materials, do your own research and see your physician for diagnosis. I would also recommend sharing your stories and pictures with our broader audience so that others may offer input and/or learn from your experiences. These conditions, especially the vasculitis related, are rare and difficult to diagnose. Sharing stories will spread awareness and increase understanding for all.

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A Long and Complicated History Topped by Levaquin: Please Help

by Destini Bates

Published on October 21, 2013

6841 views

A long and complicated medical history topped by Levaquin

Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

Headache, daily
Blurred vision
Magnified hearing
Increased anxiety and fear nothing like before
Right sided weakness
Numbness in tingling in my extremities
Memory impairment
Cognitive deficits
Fatigue
Body Pain
Weight Loss 20 pounds (yay)
Eye pain
Poor judgment
Child like behavior
Clumsiness
Lack of coordination
Lack of focus and inattention
Restlessness
Insomnia

Current Diagnoses

Encephalitis
Temporal Lobe seizures
Status epilepticus
Encephalopathy
Papilledema
Paraneoplastic Syndrome
High Blood Pressure
Acid Reflux
Fibromyalgia
Chronic Fatigue Syndrome / Mono

Current Medications

Synthroid 200 mg
Lamictal 125 mg 2 times daily
Fluoxetine 40 mg
Prtonix 40 mg
Linsopril 10 mg
Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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Hormones Matter^TM is conducting research on the side effects and adverse events associated with a number of common medications. Our fluoroquinolone study (Levaquin, Cipro, Avelox) will come online soon. To sign up for our newsletter and receive weekly updates on the latest research news and research participation opportunities click here.

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My Son’s Gardasil Story and Thiamine Deficiency

by Michelle Kozel

Published on October 16, 2013

4814 views

On June 16^th 2012 my son complained of ear pain, so I took him to his doctor thinking he had an ear infection. He had no infection but his doctor suggested doing a physical exam since he had not been in for a couple of years. My son had just turned 18 years old three weeks prior and just graduated from high school. He was happy, healthy, and active. After the exam I was called into the room. His doctor said he was in good health and observed no problems, but since he would be going off to college in the fall, he recommended that he should receive the meningococcal vaccine along with the Gardasil vaccine. In his words, “HPV is rampant in colleges and he should have this vaccine.” This had been my son’s physician since birth, and having no prior knowledge of the Gardasil vaccine controversy, I trusted him and agreed to these two vaccines that day.

There was absolutely no discussion of possible harmful side effects.

My son did not have any immediate reactions that I can remember, but on July 30^th 2012 that all changed. We were out to lunch and when his food arrived he looked at me with a very strange look on his face and said that he just didn’t feel right, something was wrong. He could not eat that day even though he was hungry just prior. He would complain of severe stomach pain that came and went over the next few weeks.

On August 7^th 2012 he received the second dose of Gardasil. His stomach pain increased in severity, but we still did not make the Gardasil connection. Who would think that a vaccine for HPV would cause stomach aches?

Just nine days after that second injection, he felt he needed to go in and see his doctor. The pain was becoming unbearable. The doctor prescribed antacids but this only made his problem worse, so he then suggested an endoscopy. The endoscopy came back completely normal. At this point his doctor felt that his stomach pain was due to stress and anxiety because he was going off to college. The doctor suggested that he should “go talk to someone.” I knew for a fact that the pain was not in his head or simply due to stress. It was real. Now, almost a year later, and with the knowledge of the possible side effects of the Gardasil vaccine, I am very angry that his doctor did not recognize “severe stomach aches” as being one of the Gardasil side effects. How did he not connect those dots, especially given the fact that my son was in his office just nine days after receiving the second dose complaining of that very thing? This recognition would have prevented him from getting that dreadful final dose.

My son left for college and soon after began developing other symptoms, mainly extreme fatigue and brain fog. He made it through the quarter and came home for Winter break. On December 27^th he received the 3^rd and final dose of Gardasil. The very next evening he became extremely sick. All the symptoms he had been experiencing along with many others became instantly worse. I was finally able to make the Gardasil connection. Since then he has had more symptoms than I can list, sinus headaches, pain at the base of his skull, fever, chills, hair loss, vision changes, gallbladder pain/gallstones, sleep disturbances, tingling, numbness, no appetite, weight loss, anxiety, excessive thirst, salt cravings, kidney issues, liver issues, heart palpitations, slow heartbeat, fast heartbeat, dizzy, rashes, mouth sores, yeast issues, low stomach acid… the list goes on. To this day he still suffers from many of these symptoms.

What has followed are many doctors and many, many tests; most of which have come back normal with the exception of his most recent test. After reading Dr. Lonsdale’s article on thiamine deficiency and his recommendation for Gardasil injured to have a red cell transketolase blood test, I immediately requested one for my son. I researched the symptoms of thiamine deficiency and he pretty much had every single one. The test came back strongly positive. He was severely thiamine deficient.

This is where we are today. We started immediate supplementation with oral alliathiamine and we are looking into possible IV supplementation, for perhaps, a quicker, more thorough improvement. I sincerely hope that this discovery might be the key to my son finally being well again and that this devastating nightmare may finally come to an end.

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Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine (we hope to launch the male version soon), please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

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Thiamine Deficiency Testing: Understanding the Labs

by Derrick Lonsdale MD, FACN, CNS

Published on October 14, 2013

57733 views

It has recently been found that a number of individuals who have experienced adverse reactions to the Gardasil or Cervarix vaccines and some medications have had a blood test that indicated thiamine deficiency (TD), or its abnormal chemistry (TAC) in the body. This article reviews the methods by which TD or TAC can be detected.

Blood Thiamine – Vitamin B1 Concentrations

Measuring blood thiamine or B1 concentrations is the laboratory test that is commonly offered by doctors. It is only helpful in extreme cases and is usually in the normal range even when there is clinically demonstrable abnormal body chemistry. The reason for this is that thiamine does its work inside cells and has no effect outside them. When we get this vitamin from our natural food, it goes through a very important genetically determined process to enter our cells. There can be something wrong with this system so that even a dietary sufficiency will not be effective and the concentration in the blood will be in the “normal” range. When the B1 is inside a cell, it has to be treated by a biochemical process known as phosphorylation to become an active vitamin. Failure of this mechanism will result in a “normal” blood level but no vitamin activity. We therefore have to use a method that actually detects this “vital” activity.

Erythrocyte Transketolase: The Test of Choice for Assessing Thiamine Deficiency

Erythrocyte is the technical name for red cells. These are the cells that carry oxygen to our tissues and they contain a complex mechanism that depends on a series of biochemical processes, each of which requires an enzyme. Transketolase is one of these enzymes. Its activity can be detected by a laboratory test and measuring transketolase is the only way of showing that the activity of thiamine is normal. The reason for this is that all the enzymes in body and brain cells require one or more “cofactors” that enable the enzyme to function properly. Vitamins and some minerals are cofactors and that is why they are so important. We have long known that they have to be obtained from our diet, but the reasons given above make it clear that dietary intake may be normal and still result in poor function of the enzyme in question.

Transketolase requires two cofactors, thiamine and magnesium and the laboratory test is designed to show their deficiency or abnormal chemistry by detecting the activity of the enzyme. Because thiamine is vital to cellular energy production, its deficiency affects first the tissues that are the most active oxygen using tissues, the brain, nervous system and heart.

Method of Performing Erythrocyte Transketolase Test

First, the baseline (as it exists in the patient’s red cells) activity of the enzyme is detected by measuring the rate at which it synthesizes its product, the chemical substance next in line in the series of biochemical reactions that are referred to as a “pathway” to the final end product. This is reported as TKA and it has a normal range. In moderate thiamine deficiency the TKA can still be in the normal range but if it is low it indicates that the enzyme is not doing its job efficiently.

The next step is to repeat the test after the addition of thiamine pyrophosphate (the biologically active form of the vitamin) to the test tube reaction. If there is an acceleration of the product synthesis, it indicates that the enzyme needed its cofactor to become efficient in its job. This is reported as a “percentage increase in activity over baseline”. This is called TPPE (thiamine pyrophosphate effect); the higher the TPPE, the greater the deficiency. A “normal” range for TPPE is allowed up to 18% and this was drawn from people that were supposedly “healthy”, meaning free of symptoms.

In essence the TPPE should be zero, indicating that the enzyme is fully saturated with its cofactor. If a person is (unknowingly) sensitive to sugar, this test may be abnormal and show the effect of sugar in that individual. This is because thiamine is vitally necessary to metabolism of ALL simple sugars. That is the reason why sugar caused disease is so common in our world today.

In order to test thiamine deficiency, one must request transketolase testing. Not all labs can perform this test and so many will substitute the simple blood vitamin B1 testing. This test is insufficient for detecting thiamine deficiency for the reasons stated above. In this case, you may have to advocate on your own behalf and find the appropriate lab testing service.

Additional Labs

Since the publication of this article, the US lab performing these tests has closed. We have just learned a lab in London offers transketolase testing: Biolab Medical Unit. As we learn of additional labs offering the appropriates tests we will post them here.

Health Diagnostics and Research Institute in New Jersey also apparently will test for thiamine pyrophosphate (TPP) and erythrocyte transketolase (ETKA), but these tests are not listed on their menu and have to be requested.

In Germany – SYNLAB MVZ Leinfelden-Echterdingen GmbH
Labor Dr. Bayer
Nikolaus-Otto-Str. 6
70771 Leinfelden-Echterdingen / Germany

In Spain – Estudios Analiticos – Avenida nuevo mundo 11 (Madrid)
http://www.eaac.es
Email: info@eaac.es
Telephone: 916334223
Fax: 91 533 10 44 / 91 632 44 17
Information: Monday to Friday: 8:00 a.m. to 8:00 p.m. Saturdays: 9:00 a.m. to 10:30 a.m.

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Image by Tatiana from Pixabay.

Vanilla Peach Oatmeal: Anti-Inflammatory Diet Friendly

by Kelsey Chin

Published on October 11, 2013

2527 views

One of my staples in my Endo-safe and anti-inflammatory diet, is gluten free oatmeal. My favorite way to prepare it is simple, hearty, and oh-so yummy!

Endo safe and Anti-inflammatory

Vanilla Peach Oatmeal
(all ingredients organic)

Ingredients
1 cup rice milk
1/2 cup gluten free oatmeal
1 tsp vanilla
pinch of salt
2 tbsp flax seeds
raw honey
1 peach
sprinkle of cinnamon

Directions

In a small pot, bring the rice milk to a boil. Add salt, oatmeal, and vanilla. Turn heat down to medium-high, and stir continuously until the oats have soaked up the liquid. Transfer your oatmeal to a bowl. Sprinkle cinnamon, flax seeds, and sliced peach. Drizzle honey on top. Enjoy with your favorite herbal decaffeinated tea!

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