chronic fatigue - Page 2

A Light at the End of the Tunnel: Uncovering Thiamine Deficiency

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Early Health Issues: Enuresis, Long Term Antibiotics and Gardasil

My name is Eva, I am 24 years old, I am from Spain and I would like to share my story. Since I was born I have been a very healthy and active girl. The only thing to note is that I have always had frequent urination and nocturnal enuresis until I was 12 years old. At age 13, I began having frequent bouts of tonsillitis and with each episode, I was given a course of antibiotics. Eventually, I was taking antibiotics every three months along with ibuprofen continuously. At 15 years old, they gave me the human papilloma vaccine (HPV) – Gardasil.

After the vaccine, I began having fructose and sorbitol malabsorption problems and because of the frequency of antibiotics, I developed abdominal pains. I had a very pale color on my face and I was a little more tired than usual. I kept getting sore throats and at age16 they removed the nasopharyngeal tonsil /adenoids. In spite of all of this, I was living a normal life and continued to excel in school, receiving honors degree in high school.

At 18 years old, I had another course of antibiotics. This time for three months because the pus plates of my throat did not go away. I was exhausted. In the end, it was determined that I had a staphylococcus aureus resistant infection that was resistant to penicillin. I had an antibiogram, and of all the chances of antibiotics to which I was sensitive, the doctor chose levofloxacin. I was given levofloxacin for treatment of 14 days.

A few days after the treatment, in September 2012, I moved to another city to start my university studies (2 careers at a time). After a month, I got another sore throat that continued for three months. They put me on intravenous antibiotic. The doctor proposed to me to have an operation on my tonsils and I accepted. Just before the operation, I became sick again, and since they could not operate on me with an infection, he prescribed a round of amoxicillin with clavulanic acid plus levofloxacin. It had been five months since I had taken the first course of levofloxacin. This was in February 2013. After the operation, a month later, my knee and jaw began to hurt on the left side of my body. The traumatologist told me he had nothing. The dentist took my wisdom tooth, did a root canal and made dental fillings on that side, but my pain continued. I finished the course and that summer was very stressful for different reasons.

At the end of the summer, I went back to take an antibiotic for a tooth infection. A week before the beginning of the course, in September 2013, I started to feel very tired, and one night, in the middle of the street, I got dizzy and lost my sight and I had to go to the floor for a while before recovering. That’s where the nightmare began. I began to have multiple symptoms: tachycardia, nervousness, dizziness, stomach pains, intolerances, etc. At the end. I had an analysis and they gave me a diagnosis: Hashimoto’s thyroiditis. They started to treat it and at 4 months, when I was “stable” (in lab numbers), my left ankle started to hurt as if they were squeezing me with a chain. It was horrible and it started to go up to the knee, to the hip and shoulder and the pain in my mouth was worse. All on the symptoms were on my left side. The doctor said I had tendinitis, without more importance.

Over the next four months, I began to weaken. I had no strength, my legs were weak, and my mental exhaustion was increasing. I went through all kinds of doctors: rheumatologists, neurologists, internal medicine, traumatologists, and at the end, they concluded that I had fibromyalgia and chronic fatigue syndrome. That’s it. That is the best they could do and they offered no help.

Taking Matters into My Own Hands: The Fluorquinolone Connection

I began to read to realize that they are catch-all diagnoses, where they put people with multiple symptoms. Eventually, I found a doctor who began to treat the intestinal microbiota, to change my diet, reduce stress, etc. This was from 2014 to 2016. While it is true that I learned to manage crises so as not to live with pain 24 hours a day, I was stuck. I was still exhausted and had neuralgia on the left side of my body. So over these last two years I have tried other doctors, I have gone to neurologists specialized in amino acid biochemistry, but nobody knows why my health has declined so much. I have tried acupuncture, antioxidant therapy, etc. At the same time, I have not stopped reading, until I came to this wonderful blog two months ago, and suddenly EUREKA! Everything makes sense. Nobody had told me until now the dangers of fluoroquinolones. It is true that there are people who notice the problems of the antibiotic while taking it and have to leave it, it started a month later, but everything fits. My symptoms include:

  • Chronic fatigue which is very debilitating. I have been at home for 5 years, barely able to go out. I cannot study, work, or anything.
  • I have neuralgia / neuropathy ONLY on the LEFT SIDE of the body (no one gives meaning to this), from the head to the left toe.
  • Muscle weakness and rigidity
  • Tendinitis
  • Intolerance to histamine
  • Polyuria, urinary frequency
  • Sleep problems, sleep is not refreshing. I have epic dreaming disorder that does not let me rest. This problem of dreaming and getting up very tired has been a problem since since I was 16.
  • Problems with noise and light; I have to sleep with plugs and mask.
  • Alterations of the nervous system; I startle easily. I have a lot of intolerance to stress.
  • Problems with basic regulation of the body
  • Dizziness every time I get up when I’m sitting or lying down.
  • Recurrent pharyngitis / sinusitis / chest pain.
  • Hashimoto’s thyroiditis
  • Mental exhaustion
  • Weight loss.
  • Intestinal problems, intolerances, dysbiosis, infection by chronic GERD.
  • Swallowing problems. (The left side of my throat is more inflamed on the inside and it is hard for me to pass the food. It gets stuck).

Surely there are more symptoms, but I forget.

At the Root of My Symptoms: Severe Thiamine Deficiency

After reading the work of Dr. Lonsdale, I measured my transketolase and the result suggests quite a deficiency of thiamine: activation TPPE 25%. So I’ll see if trying this I can improve, until now I was lost and I saw the light at the end of the tunnel.

Questions for Dr. Lonsdale: Hello doctor, first of all thank you immensely for your dedication and work, thank you for your research and your book, you are helping a lot of people. I was lost until I found Hormones Matter and read it.  The activation of TPPE is at 24.98%. As I have read, this suggests quite a deficiency of thiamine. I’m going to look for a doctor who wants to help me treat my deficiency. I’ve read that you have to be careful with paradoxical reactions. But I have several questions that I would like you to answer if it is possible:

  1. The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
  2. Is supplementation with thiamine forever or only until the transketolase of 0? What is the time of supplementation with thiamine? When would I have to repeat the analysis of transketolase to see how it evolves?
  3. Could it be that levofloxacin has done me irreparable damage and I always had thiamine problems? Or can it be something genetic? – What is the suggested treatment?
  4. I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
  5. What do I do in the face of a paradoxical reaction? Do I stop the supplementation a few days and continue again, or to endure the reaction and continue? I want to give this information to the doctor who will treat me, in addition to his book.
  6. Does it make sense to have only neuralgia on the left side of the body? It is as if I had two bodies, the joints on the right side do not hurt, nor the nerves, only on the left side. I do not have anyone in the family with a similar background. My maternal grandfather was an alcoholic but he managed to quit. My maternal grandmother, 2 aunts and my mother have hypertension. And on my father’s side, my grandmother has always been tired from a young age, with pains and thyroid problems.

Thank you very much, Eva.

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Women in Pain: Problems and Mistreatment

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Philippa Bridge-Cook

Chronic pain in North America is a major problem for men and women alike, affecting about one-third of adults. Many people of both genders do not receive adequate treatment for their pain. This causes great personal suffering, as well as high costs to the economy through direct health care costs and loss of work productivity for those in pain. However, women with pain face additional problems that suggests there is a systematic bias in the way healthcare is delivered to women. Diseases that affect mostly women are generally poorly understood and understudied, and although women report pain that is more frequent, more severe, and of longer duration than men, in general women’s pain is treated much less aggressively.

Women are at higher risk of developing a chronic pain condition than men. For example, women have triple the risk of autoimmune diseases, which are often associated with chronic pain, compared to men. Women also suffer from certain painful diseases that are rare in men, such as endometriosis and vulvodynia. Endometriosis alone affects one in ten women, and women who have endometriosis often have other painful diseases as well, such as interstitial cystitis/painful bladder syndrome.

However, research into causes and treatments for these diseases that disproportionately affect women is sadly lacking. A report written by the Campaign to End Chronic Pain in Women looked at six conditions common in women that are routinely misdiagnosed and ineffectively treated: endometriosis, vulvodynia, chronic fatigue syndrome, fibromyalgia, interstitial cystitis/painful bladder syndrome, and temporomandibular (TMJ) disorders. Examining funding to these six conditions by the National Institutes of Health (NIH) revealed that on average, the NIH spends $1.33 per affected patient on research into these conditions, compared to $186 per patient for Parkinsons’s disease, or $53 per patient for diabetes.

However, one need not look at diseases that are underfunded, poorly understood, and lacking effective treatments to find evidence of a gender bias in medicine. One of the best examples of gender bias is, surprisingly, in coronary heart disease. When presenting to emergency rooms or hospitalized for a heart attack, multiple studies have shown that men receive faster access to diagnostic tests and treatments, and men are more likely to receive advanced procedures and better care (for example,see here, here, here and here), and these disparities have not changed over time.

Although heart disease can present differently in men and women, atypical presentation in women does not account for all of the difference in delayed or lack of access to tests and treatments. In one study of doctors evaluating hypothetical patients— male patients and female patients presenting with typical heart attack symptoms and identical risk factors– the doctors did not make different recommendations for the male and female patients. However, when stress was included as a risk factor, only 15 percent of doctors diagnosed heart disease in the women, compared to 56 percent for the men. This study suggests that doctors are much more likely to write symptoms off as psychological when the patient is a woman. And women are medicated as if their pain is emotional instead of physical: for example, after coronary artery bypass graft surgery, women are less likely than men to receive opioid pain medication, and more likely to receive sedatives instead.

Many studies have shown that female gender is a major risk factor for the undertreatment of pain, across many different types of pain. After abdominal surgery and appendectomies, women receive less pain medication than men, even though many studies have shown that women are more likely to report higher levels of pain than men. For cancer pain, and pain caused by HIV, women are significantly more likely to be undertreated for pain. Even paramedics are more likely to give opioid analgesics to men suffering from pain pre-hospital admission than to women. In general, doctors and other medical professionals are more likely to view women’s pain as caused by emotional factors even in the presence of positive test results, and are more likely to administer tranquilizers, antidepressants, and non-opioid analgesics to treat women’s pain.

Women face obstacles to getting appropriate care for many different diseases, at every step of the process. Women’s diseases tend to be underfunded, underresearched, and poorly understood, so getting a diagnosis is difficult, especially when there is the additional obstacle of health care providers tending to assume that women’s symptoms are psychosomatic. Once diagnosed, women do not receive the same level of care for their diseases that men do. And if women can be shortchanged on care for cardiac conditions, which tend to be taken seriously in our society, well researched, and have evidence-based guidelines to guide treatment, imagine how poorly women may be treated for diseases like endometriosis, for which myths about causes and effective treatment abound, and their pain cannot be measured with any objective tests.

Until medical care for women’s diseases moves from the 1950s into the present day, the only solution for women is to be extremely persistent. Women need to seek out the few care providers who understand their disease and are up to date on the latest, albeit sparse, research, and they need to be persistent about having their symptoms acknowledged and treated by their care providers. And in general, we need to keep pushing for better awareness of these problems, and funding for research so that women can receive the medical care they deserve.

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A Life Journey to Wellness – With Chronic Pain and Fatigue

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Robyn Myers

Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed  by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest.  I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing.  Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers.  This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground.  The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain.  I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®.  I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not.  My mom understood and taught me coping skills so that the pain would not stop me from enjoying life.  Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy  one pain-free week, and then PMS would begin the cycle all over again.  My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles.  I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill.  In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors.  It explained all I had been experiencing since age 12.  I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms.  I was always tested for Mono (which always came back negative) and was always told I “had a virus.”  I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career.  However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis).  I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with  repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF  process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment.  I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks.  What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down!  I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.”  This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened.  During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By  2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.”  Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now  under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline.  By the Fall of 2003, I was bleeding so badly I sought  a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do.  After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him.  So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen.  Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer.  In the meantime, I will work to be as healthy and well as I can be.

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