multiple sclerosis

Vitamin D’s Role in Preventing and Treating Multiple Sclerosis

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Modern lifestyles are countering nature’s intentions to keep us healthy. Since the advent of the Industrial Revolution in the late 18th century, we have migrated from farms to factories and office buildings. Nature intended for us to live and work outdoors in the sun—without sunscreen. Today most of us live and work indoors—often wearing sunscreen, or cosmetics containing sunscreen. By doing so, we have denied our bodies one of the most fundamental sources of health: the ultraviolet B (UVB) rays of the sun that initiate vitamin D protection in our skin.

Compelling scientific evidence over the past century indicates the significant role vitamin D plays in protecting us from developing a wide variety of medical conditions including autism, autoimmune disorders, cancer, cardiovascular disease, diabetes, and thyroid disorders. It is not a coincidence that the prevalence of these diseases has emerged during “modern” times. These medical conditions, many of which are serious, chronic, and life-threatening, frequently result in health, financial, and social burdens to the patients and their families.

What is Multiple Sclerosis?

Multiple sclerosis (MS) befits a disease of modern civilization. First identified by French neurologist Jean-Martin Charcot in 1868, MS is a chronic, neurological autoimmune disorder that damages the myelin sheath, the multiple layers of fatty tissue that surround and protect the nerves in the brain, spinal cord, and optic nerves. When the myelin sheath is intact, electrical impulses are carried through the nerves with accuracy and speed. When the myelin sheath is damaged (sclerosis is the scar tissue formed by damaged myelin), the nerves do not conduct electrical impulses normally. The impulses are distorted or interrupted, resulting in a range of symptoms including numbness, blindness, paralysis, and brain damage. MS also can result in death.

Who is at Risk of Developing MS?

Despite the identification of MS almost 150 years ago, MS has no cure. Over 2.5 million people around the world have been diagnosed with MS including about 400,000 Americans. Women are to two to three times more likely to develop MS than men. Although MS is usually diagnosed between the ages of 20 and 50, the disease can strike at any age. In addition, Caucasian women of Northern European descent are more frequently diagnosed with MS than African Americans, Hispanics, and Asians.

As part of the Environmental Risk Factors in MS Study (EnvIMS), researchers at the University of Bergen in Norway sought to understand better the association between MS and sun exposure measures by studying a total of 1,660 MS patients and 3,050 controls from Norway and Italy. The researchers’ findings included significant connections between infrequent summer outdoor activity and sunscreen use and an increased risk of MS. Published in the January 10, 2014 issue of Multiple Sclerosis, the study’s conclusion stated, “Converging evidence from different measures underlines the beneficial effect of sun exposure on MS risk.”

It is not surprising that incidences of MS in the equatorial region occur much less frequently than at the higher latitudes. Epidemiological studies over the past several decades however indicate that women who live at higher latitudes have an increased risk of developing MS. For example, University of Oxford researchers studied MS patterns in Scotland by examining hospital admissions throughout the country between 1997 and 2009. The research team discovered a “highly significant relationship between MS-patient-linked admissions and latitude” across Scotland. This study was published in a 2011 issue of the Public Library of Science (PLoS) One journal.

In addition, a seasonal risk factor also exists for MS. Researchers at Queen Mary University of London conducted a systematic review of data for 151,978 MS patients to ascertain the link between month and location of birth, and the risk of developing MS. They found that babies born in April had the highest risk of development of MS, and infants born in October enjoyed the lowest risk of MS. The researchers also noted a direct correlation between the latitudinal location of expectant mothers and MS risk. The study, published in a 2012 issue of the Journal of Neurology, Neurosurgery, and Psychiatry, suggests the importance of maternal vitamin D supplementation in particular during the winter season.

What Causes MS?

The definitive cause of MS remains unknown but medical research suggests genetic and environmental factors influence one’s risk of developing MS. Interestingly enough, science has demonstrated that vitamin D plays a role in influencing environmental and genetic factors that may affect how likely one is to develop MS.

A landmark study at the University of Oxford, published in a 2009 issue of Public Library of Science (PLoS) Genetics, examined how genes and the environment interact in MS. A gene variant called HLA-DRB*1501 is associated with an increased risk of developing MS. The research team discovered how vitamin D influences the HLA-DRB*1501 gene variant. As we know, the amount of vitamin D synthesized by UVB sunlight exposure fluctuates from season to season. Therefore, women who give birth during the spring, carry the HLA-DRB*1501 gene variant, and have low vitamin D levels are more likely to produce children with a higher risk of developing MS.

The study’s author Dr. Sreeram Ramagopalan suggested that adequate vitamin D3 supplementation during pregnancies may decrease the risk of children developing MS in later life. The combination of carrying the HLA-DRB*1501 gene variant and lacking adequate vitamin D levels may impair the ability of the thymus, an immune system organ, to delete rogue T cells, a type of white blood cells, that play an important role in maximizing the immune cells. The rogue cells would attack the body, causing demyelination of the central nervous system.

How Can Vitamin D Protect Against MS?

MS is a neurological autoimmune disorder. Scientific research over the past few decades solidifies the connection between vitamin D and autoimmunity. Vitamin D plays an integral role in the regulation of the adaptive immune system.

Adequate vitamin D in our bodies can protect us from autoimmunity because adaptive immune cells contain vitamin D receptors (VDRs). These receptors are attached to the surface of the adaptive immune system’s antibodies and sensitized lymphocytes. When the VDRs receive adequate amounts of vitamin D, they enable the adaptive immune system to function properly by attacking new and previous invaders.

When the VDRs attached to the adaptive immune system’s cells do not contain sufficient vitamin D to attack invaders, autoimmunity may kick in, causing the death of healthy immune cells. Thus, vitamin D deficiency can contribute to the development of autoimmune disorders such as MS.

How Can Vitamin D Treat MS?

The scientific community is delivering hope to MS patients by investigating vitamin D intake as a treatment for the disease. Research suggests that higher vitamin D levels are associated with reduced disease activity in MS sufferers.

Dr. Alberto Ascherio of Harvard University’s School of Public Health and colleagues recently concluded that vitamin D appears to be connected with MS disease activity and progression in patients who experienced an initial episode suggestive of MS and were treated with interferon β-1b. The researchers found that 20 ng/mL-increases of vitamin D levels within the first 12 months of experiencing an initial episode predicted a 57 percent lower rate of new active lesions as well as a lower risk of relapse. In addition, the results included a 25 percent decrease in annual T2 brain lesion volume and a 0.41 percent lower yearly loss in brain volume over four years. The Harvard study was electronically published on January 20, 2014 in JAMA Neurology.

According to a study published in a 2012 issue of the Annals of Neurology, a University of California, San Francisco research team examined 469 male and female MS patients over five years to ascertain how vitamin D affected disease progression. The researchers discovered that for each increase of 10 ng/mL in vitamin D levels, the MS patients benefited from a corresponding 15 percent decrease in new brain lesions as well as a 32 percent lower risk in inflammation of the myelin sheath.

A Finnish study, published in a 2012 issue of the Journal of Neurology, Neurosurgery, and Psychiatry, concluded that vitamin D3 supplementation significantly reduced the number of brain lesions in MS patients undergoing interferon β-1b treatment.

Paving a Way to Better Health and Quality of Life

Adequate vitamin D levels in our body may indeed protect us from developing MS. If you have experienced a possible initial episode or have been diagnosed with MS, please consider how vitamin D3 supplementation may decrease the severity of your symptoms.

We must take ownership of our health by understanding the importance of vitamin D as well as other micronutrients. Why wait years, or decades, to garner the results of further studies and clinical trials to define the exact relationship between vitamin D status and MS. We can be proactive by taking daily vitamin D3 supplements and enjoying moderate sunlight exposure to increase our vitamin D levels.

It is imperative to take enough vitamin D so this essential nutrient will be stored in your cells to help regulate your immune system. The greater your vitamin D level (easily obtained from a simple blood test called 25(OH) vitamin D), the more likely you will benefit from a stronger immune system that will protect your body’s cells from attacking one another.

No one wants to endure the health, financial, and social burdens of a chronic debilitating disease. By empowering yourself with adequate vitamin D, you may not only reap lots of health benefits but enjoy a better quality of life.

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Image credit: Stephanie021299, CC BY-SA 4.0, via Wikimedia Commons
This post was published here originally on March 4, 2014. 

Copyright © 2014 by Susan Rex Ryan. All rights reserved.

Birth Control: The More Things Change

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The medical and drug industries are notoriously arrogant. While each generation of practitioner may acknowledge the errors of the past, they continue down the path of contemporary errors with an inexplicable faith in their own omniscience. Unfortunately, the magnitude of collateral damage from these mistakes has tended to grow exponentially with each passing generation, but no medical mistake (so far) can match the horrific toll still being wrought by birth control.

Time After Time

We aren’t terribly far removed from doctors promoting the health benefits of smoking cigarettes. Nor, in the grand scheme, has it been that long since leeches and bloodletting passed for cutting edge technology – or perhaps sucking edge.

Reflecting on errors of the past shouldn’t imbue today’s doctors with a sense of supreme knowledge. Instead, it should give them pause to wonder what tomorrow’s doctors may find laughable about their current practices.

The modern doctor may laugh at the doctor who promoted cigarettes, while that doctor laughed at those who promoted lobotomies, as those doctors laughed at snake oil salesmen.

While today’s doctors may have largely discarded lobotomies and leeches, the part that sucks most is that we seem to have lost the art of doing away with antiquated medical dogmas once they’ve been proven unsafe… at least, until lawsuits and settlements tip the balance.

Mea Culpa

The drug companies sit in the shadow of a well-documented history of business practices which promote profits-over-people. Examples like thalidomide, DES, and Vioxx should be enough to call into question this industry’s trustworthiness. Whether it’s greed or hubris, the industry consistently releases new drugs with authoritative assurances regarding their safety, and it’s rare to see them back down from these assertions – even as the courts begin to say otherwise.

So, consider how rare this admission was from Dr. Harry Rudel, one of the developers of The Pill:

The pill is something we entered into with the best of faith, something we truly believed affected only ovulation and fertility. It was a relatively small dose of a drug, and it appeared that it was not affecting anything except fertility. Then as we began to look, we began to see that we are influencing many systems in the body.

Change Is in the Air (Or Is It?)

Hormonal birth control remains the one persistent drug that seems to be made of Teflon – nothing sticks. It has been linked to dramatic rises in diseases affecting everything from the heart to the liver. With each newly identified risk, ‘experts’ assure us the benefits still outweigh the risks, and, somehow, that seems to be enough to just make it go away.

At some point, we (meaning ALL of us around the world) need to stop accepting this myopic minimization of all these disparate negative consequences. Sincerely, we are all stakeholders in this fallout, which has grown to a scale that would now be impossible to measure.

Recently, thoughts about the sheer magnitude of this tragedy hit me like a gut punch. I’ll explain what happened and share three scenarios that should be enough to make us seriously rethink our position on hormonal birth control.

Changes in Lupus

I recently participated in a webinar with Sara Harris and Rebecca Asquith from Follow Your Flow, during which I discussed the dramatic evolution of lupus in a relatively short amount of time. I explained how lupus used to be an old person’s disease. Then, with the rollout of birth control, doctors were alarmed that they began to see young women coming into their clinics with lupus.

Fifty years later, lupus is thought of primarily as a young woman’s disease. The tides have shifted so significantly in such a short amount of time that what used to be the norm is now called ‘late onset lupus.’ Women in their 40s and 50s are surprised to learn they can even develop lupus at ‘such a late stage of life.’

Shortly after the webinar, I encountered one of the attendees, who told me that her husband’s sister had been diagnosed with lupus in 1966 at the age of 17. Her specialist had been “so in awe of her condition that she attended presentations/lectures with him.” She died at the age of 24. While it isn’t certain that she was on The Pill, the timing in relation to the wave of young women who suddenly began developing this old person’s disease makes it very plausible.

Thinking of this 24-year-old woman who died so many decades ago struck me. Her family never even knew that her lupus could have been connected to birth control. How many other young women have been struck down so young because of these potent drugs, and nobody was ever the wiser? Please – pause for a second and ponder that – what is the potential body count of young women who have died in the past 60 years from lupus, a stroke, a pulmonary embolism, a heart attack? How many of them were buried with their family wondering why she had the misfortune of being taken so young – without ever knowing how easily it could have been prevented?

Changes in Breast Cancer

Unfortunately, lupus isn’t the only disease that looks different today than it did when hormonal birth control was introduced. Just as expert testimony at the Nelson Pill Hearings (1970) revealed concerns about changes in lupus, other experts testified about how The Pill would likely contribute to breast cancer numbers. One of those experts was Dr. Max Cutler, who warned that The Pill should never be used chronically. He called it a cancer time bomb whose fuse could be 15 to 20 years.

Dr. Cutler practically guaranteed we would see a dramatic rise in breast cancer. At that time, 1 in every 20 women would be diagnosed with breast cancer at some point in her life, which equated to about 75 to 80,000 diagnoses each year.

This year (2021), we expect to see over 281,000 breast cancer diagnoses, and 1 in every 8 women will be diagnosed at some point in her life. That’s an increase of over 250-percent!

Many doctors now dismiss the breast cancer scare as old news attributed to the first-generation pills. They assume the newer ‘low dose’ formulations resolved that problem (because that’s what they’ve been taught). However, a recent Danish study confirmed that women on these newer formulations still faced a 20-percent greater risk of developing breast cancer than women who didn’t take hormonal birth control.

Changes in Multiple Sclerosis

As I’ve written previously on Hormones Matter, multiple sclerosis is a naturally discriminatory disease in terms of gender because of how particular cytokines within the immune system interact with estrogen. This is true of many autoimmune diseases.

So, if the disease has a natural gender bias, how do we know what role birth control is playing in its incidence?

In 1940, well before the introduction of hormonal birth control, twice as many women as men had multiple sclerosis in the US. However, by the year 2000, as the number of overall cases grew, the gender gap also widened – 4 out of every 5 diagnoses were women. That represents a 50-percent change in the gender bias over each decade.

Epidemiological studies from other developed countries revealed similar shifts in the gender ratio over the same timeframe. For example, a Danish study found that men experienced a 30-percent rise in their cumulative incidence rate (CIR), while the CIR for women more than doubled.

The Epidemiological Significance of Rapid Change

Commenting on some of the multiple sclerosis studies mentioned above, Sreeram Ramagopalan, Ph.D., research fellow at University of Oxford, said this:

A change that occurs within a century is too short a time for a genetic cause. This suggests that environmental factor(s) are at work in a sex-specific manner.

Any of these examples alone should be enough to make us feel as if we’ve been collectively punched in the gut. Hopefully, it will eventually spark an epidemiological curiosity in a researcher somewhere.

If you happen to know of an epidemiologist who’s trying to figure out what the sex-specific environmental factor(s) might be, could you direct them my way? I’ve got a thought or two I’d be willing to share.

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Neuropathy and Multiple Sclerosis Treated with Biotin, Thiamine, and Magnesium

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Neuropathy From Unknown Causes

I was diagnosed with “Neuropathy from unknown causes” back in 2005. It started in my feet (coldness, loss of feeling, cramps, stiffness). Then, over the years the numbness worked its way up to my calves, with severe cramps, then thighs and even my biceps got involved (squeeze the bicep, get a cramp). Sometimes I would have numbness in the hands and face. I started having a gait issue occasionally with a foot drop. Overall my legs got extremely stiff. Muscles felt like piano wires and no amount of stretching helped. I also had acid reflux issues on and off and a pain in the low left abdomen which often expressed out the back at the lower left hip. I used to love lifting weights but stopped as instead of soreness then recovery with more strength, lifting seemed to cause soreness that just increased no matter how long I spaced recovery between sessions. Doctors said they eliminated serious possibilities and whatever it was wouldn’t kill me. They noticed some brain lesions, but joked – well who doesn’t have those :-). Still around 14 years later so they were right.

Over the last couple of years, I started to have frequent stumbles which progressed to several serious falls last year. Luckily, I avoided serious injury. My diagnosis hasn’t been changed nor looked at since 2005, but to be fair, when rushing through the last appointment with my doctor I forget to mention the stumbling and falling as a new symptom. There seems to be a genetic factor at play as my father suffered from stiff legs and a walking issue and neuropathy. Both brothers are having similar issues and an Aunt had Parkinson’s Disease.

Enter Thiamine

I ran across your work with thiamine and have started high dose of the TTFD form of thiamine (allithiamine and lipothiamine) about 100 mg 3x a day. I saw a quick resolution of the stumbling and falling issue, my balance has been fantastic, a reduction in muscle pain throughout my body, acid reflux vanished, and a big improvement in cramping in thighs and calves. I also have tinnitus and haven’t seen much change there, it comes and goes.

My brother has also started. He had water on the heart after having chemotherapy, low energy, constant diarrhea, bloating, weight gain, and the neuropathy in the legs. He is doing very well with only 50 mg a day.

We both noticed after 3-4 days, a relaxation of chronic muscle spasms and increased flexibility, especially in the shoulders. My brother says he could raise either arm and touch the middle of his back for the first time in over 40 years. My brother is also losing body fat around the belly quickly, he is overweight, while my weight has been steady instead of the usual battle to stop gaining weight. I also feel far stronger.

Recently, I got busy and missed some doses and the muscle cramping returned quickly and getting back to 100 mg 3X a day (along with a B-complex) cleared things up quickly. I felt things were still very good but not quite as effective, so I recently up’ed to 100 mg, 100 mg, 150 mg, 150 mg, for a total of 500 mg as I also wanted to see if I could tackle the tinnitus. In the mornings, I was waking up with my feet feeling a bit tight and after taking my morning dose I could quickly feel the feet unwinding. I noticed that the higher dose just before bedtime seemed more effective, and waking without the tight feeling in the feet.

As for questions – I am 6’4″, 240 lbs, and 64 years old. My dosage is 2.8 mg/kg. My remaining issues are tinnitus and some eye issues (vitreous detachment, lots of floaters and flashes in both eyes).  The only things I might attribute as side effects – I get hungry after my morning dose – as if I’m experiencing low blood sugar but not the other doses. I’m sometimes twitchy in the mornings (maybe a case for that higher dose before bedtime). I sometimes feel a bit spacey/hard to focus shortly after a dose which passes, and these occasional stabbing/shooting pains sometimes in nerves that haven’t bothered me before – I think this more to do with the relaxing muscles and nerves getting pinched due to my new freedom of movement and adjusting to that. That seems to only happen from sitting around and hold a posture too long then moving not when I am working on projects.

The Road to Recovery: Thiamine, Biotin, and Magnesium

The above was taken from a comment I made on the post “Beriberi is alive and well in America” in April. I had been led to the post doing searches on beriberi as I was struck how similar my symptoms were to the disease. Dr Lonsdale proposed thiamine+biotin+magnesium. I tried the thiamine first in the different forms and the lipothiamine worked by far the best. It mostly reduced the electric shocks in the feet/legs. I accidentally took 50 mg biotin thinking I was taking 5 mg and it had a near immediate and profound effect throughout my body erasing my stiffness/numbness/tingling and giving me great relief in my tightly cramped feet. It also brought back normal sensation. One effect was a powerful feeling of pulsation (blood flow) at the base of the skull after taking the biotin. I had been experiencing a lot of falls and stumbling as well and that completely stopped once I started the biotin.

During my experimentation phase, I was looking at the doses given for Biotin Dependent Basal Ganglia Disease and decided to try about 800 mg of biotin. I quickly got a severe nausea and started throwing up copious amounts of green bile, picture “The Exorcist”. In hindsight I wonder if that was a paradox reaction. So I dialed that back to about 10 mg biotin + 50 mg thiamine + occasional magnesium and was doing quite well. Not all my symptoms were gone but all in all manageable. I was also a bit bad on self – care as I would go keto/low carb, no alcohol for winter/spring and drop 30 lbs but back to an anything goes with high carbs, occasional alcohol for summer and fall with a worsening of symptoms but tolerable along with rapid weight gain.

A Switch to Conventional Medicine: Prednisone

This fall I decided that once and for all I was going to get a good health checkup and also a mainstream diagnosis and as part of that dropped the thiamine/biotin so to not affect some scheduled routine blood tests. I immediately had a big flareup in pain and stiffness which got me first sent to Rheumatology where they said they didn’t understand why I was there, then to a physiatrist who found some spinal stenosis and prescribed a course of prednisone. The prednisone worked like magic. All my symptoms vanished except for my calves and feet where the pain and tightness was gone but the spasms and electric feelings were very high. I had the opposite of expected side effects on the prednisone. I didn’t feel hunger, drank a lot of water and lost weight, no bloating, minor increase in BP. I had also been experiencing on/off chills with a low body temperature to the point I would wear a winter coat indoors at times. The prednisone vanished this, lighting up an internal furnace of heat and energy. I felt great, my motivation increased, and I got a lot of projects done, whereas before I was dragging. Even my tinnitus was greatly reduced and even vanished at times. My heart rate which was around 60 popped up to 75. Unfortunately, I broke my sleep tracker which pre-prednisone told me I was dropping into low 50’s and even high 40’s heart-rate while sleeping. The stomach pain, head pain, stiffness, numbness all gone!

Then came the taper. I started to feel the cold again as I tapered off and on and the tinnitus came roaring back. I started to feel like I had a pain sensitivity dial. My pain was extreme in the mornings and evenings, reduced during the day. My average body temp dropped from 98.4 to 96.8. Now the numbness and tingling wasn’t just in the legs, hands and feet but everywhere. Spasms everywhere. I felt I was in a real crisis. My primary referred me to an endocrinologist but it was a 2.5 month wait.

Possible Multiple Sclerosis

With the prednisone taper and return of my symptoms, I convinced my doctor to give me another MRI of the head, as the last one was 2005. That found 10 lesions that had progressed slightly but he didn’t feel that accounted for my symptoms. I now have a neurologist scheduled in a month after communicating my list of symptoms after the prednisone taper.

2005 MRI

HISTORY: Loss of feeling in feet and pain and numbness in hands, face, and feet. Occasional tremors. Polyneuropathy on EMG.

FINDINGS: There are a few small scattered foci of prolonged T2 relaxation in the central and subcortical white matter of the frontal lobes. A few similar lesions are seen in the temporal lobes. These are nonspecific as to etiology given their distribution and appearance. None of them shows abnormal Gadolinium enhancement. The rest of the brain appears normal. The arteries at the base of the brain and the dural venous sinuses are patent and the facial structures appear normal.

CONCLUSION: Nonspecific scattered white matter lesions in the frontal and temporal lobes. The differential diagnosis includes demyelination from multiple sclerosis, sequelae of vascular headaches, early small vessel ischemic disease, and vasculitis.

My latest findings showed some progress of the lesions and they went from a few in two regions (6-7 I assume) to 10.

2019 MRI

HISTORY: Neuro deficit(s), subacute. Paresthesia.

FINDINGS: Diffusion-weighted images are normal. There is no evidence for intracranial hemorrhage or acute infarct. There are some scattered signal hyperintensities in the supratentorial white matter. These number approximately 10 and are not associated with any mass effect or enhancement. These have slightly progressed since the prior exam. Brain parenchyma is otherwise normal. Ventricles and  subarachnoid spaces are within normal limits. Vascular structures are patent at the skull base. Postcontrast images do not show any abnormal areas of enhancement or any focal mass lesions.

IMPRESSION

  1. Several small scattered white matter lesions without enhancement or mass effect. These have slightly progressed since 2005. They are nonspecific and could be due to gliosis, chronic demyelination, or chronic ischemic change. They can occasionally also be seen in patients with headaches.
  2. No evidence for intracranial hemorrhage, acute infarct, or any focal mass lesions.

My doctor still didn’t think the lesions accounted for all my symptoms and recommended waiting for the endocrinology. Both the 2005 and 2019 reports list multiple sclerosis as a possible differential diagnosis along with a couple of other things but nothing further was done. In 2005, the diagnosis was neuropathy of unknown causes.

Back to Biotin, Thiamine, and Magnesium

The brain lesions triggered some research and I discovered that high doses of biotin are being studied and in France prescribed for MS. This was enough to sink in. Being in extreme pain and figuring it is some time before any new testing, I went back to the thiamine+biotin+magnesium combination.

The results were dramatic. I immediately felt my pain sensitivity reduce to normal, so a bit of back pain was a twinge, not like something stabbing into my soul and the size of a beach ball. Stiffness, numbness, and tingling vanished in most of my body with just a bit of numbness in mouth, lips, and tongue. I could now pronounce some words again that I couldn’t just days before. I still felt the cold, especially in my feet but this is lessening every day and my average body temp is now 98.2. My heart rate is down again, but mostly low 60’s. I still cannot stand on one leg with my eyes closed but can manage with two and not sway much or start to keel over.

This time I decided that given MS patients were benefiting and tolerating 300 mg of biotin to give it a try. I increased from 50 mg to 300 over a few days. I had a touch of nausea, very minor, and no throwing up this time. Every day my symptoms are getting better. The higher dose of biotin has been more effective on the tinnitus and it sometimes is nearly gone. Currently, I am using 300 mg biotin, 250mg lipothiamine, and 350 mg magnesium and now feel back to my “normal”.  My toes still curl and jump a bit, my feet get tight ranging from 25% normal to 85% normal. If I touch my thigh my toes curl. My mouth, lips, tongue are a bit numb. Prior though, I was also having pain in the left side of my head, in the jaw, “TMJ pain”, as well as pain Northeast of top of the ear, behind and below the ear going down the neck, and my left eye hurt a lot whenever I moved it. That is all gone now with the thiamine, biotin and magnesium combo, just as it was with the prednisone.

I suspect that the prednisone was shutting down all the inflammation, and allowing me to feel great and energetic but without the biotin and thiamine and not eating much I was burning the candle at both ends and paid a terrible price once I tapered.

I have done some genetic research but it all dead ended. Any research related to thiamine deficiency disorder or biotin thiamine responsive basal ganglia disease doesn’t list any of my SNP’s except for a couple that have been studied and listed in clinvar database as benign and 23andme dna data does not have many of the SNP’s for BTBGD. If I want to pursue that route I’ll have pay for special testing.

My Promethease report (which is free now everyone!) does list 29 mutations that increase multiple sclerosis risk but I suspect that is a general container for a lot of subtypes of neurological disorder. It is possible I do have MS and it is overtaxing my ability to absorb and deliver thiamine to the brain. I have a couple of homozygous mutations on SLC19a3 (Thiamine transporter gene) but there is no data on them or any of my heterozygous mutations on SLC19a2 or SLC19a3.

At this point I’m doing well and plan on continuing with the thiamine+biotin+magnesium at the current level and I am debating if it is worth pushing on with the specialists. I also plan on going on the keto/low carb/no alcohol diet permanently. I’ve learned my lesson.

I want to thank again Dr. Lonsdale, Dr. Marrs, and this site for the information they provide. I cannot imagine where I’d be at this point without the knowledge I’ve gained here.

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. 

Birth Control Ain’t Right (But Neither Should It Be Left)

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I’m writing this article with all the trepidation of someone walking into a Thai restaurant with a peanut allergy — knowing it could go horribly wrong.

I want to discuss politics. More precisely, I want to talk about a political fight by apolitical means. When it really comes down to it, hormonal birth control and women’s health transcend politics – or at least they should. It’s easy to lose sight of that in today’s political climate.

Lupus and Birth Control

An item came across my news feed this morning that caught my eye. It wasn’t a news story, but a letter to the editor of a coastal newspaper. The writer mentioned the increasing incidence of lupus in young women caused by hormonal contraceptives (the keywords that landed it in my newsfeed). Wow! That’s a connection very few people have made. I wanted to read more.

But when I opened the letter, it was a political diatribe from a woman who was all over the map. She talked about Republicans using the Honduran caravan to get votes. She blamed the caravan on overpopulation caused by poverty stemming from a Latino machismo perpetuated by the Catholic Church. She accused conservatives of trying to outlaw birth control. I was with her when it came to the facts (or fact), but she lost me in her rhetoric – and it’s not even about whether I lean Right or Left. Let me explain:

  • The increased incidence of lupus in young women on birth control is a fact. We should all be concerned about this and be engaged in dialogue on how to fix it.
  • Politicization of the Honduran caravan is opinion. In fact, the rhetoric has gone both ways. Depending on where you get your opinion-news, you could believe the caravan was likely being funded by either Donald Trump or George Soros.
  • The overpopulation-poverty-machismo-Catholic theory is opinion. I don’t even know where to begin, but I guess there’s always a way to blame the Catholic Church when you’re talking about birth control.
  • Conservatives trying to outlaw birth control is opinion. I know some will argue that it’s a fact, but I haven’t seen any evidence of this. Living in Texas, I have a number of ultra-conservative friends, and I have never had anyone approach me with the suggestion that we outlaw birth control – and that’s with knowing how much I hate The Pill. To the contrary, I’ve actually been accused of being anti-capitalism because of my attacks on the drug industry and birth control.

Divided We Fall

Women’s health is worth the fight! Lupus induced by birth control is not only the lede; it’s the story. If we can agree on that, then I really don’t care who you think funded the caravan. If we can unite in agreement that birth control is harming women by means of breast cancer, blood clots, Multiple Sclerosis, suicide, infertility, Crohn’s Disease, diabetes… should it really matter to me whether I’m linking arms with a Republican or a Democrat?

I know it may be pie-in-the-sky to think we can rise above political affiliation in this day and age, but we should. This has been going on for far too long.

As far back as 1970, the Nelson Pill Hearings revealed many of the horrible complications linked to birth control. The news coming from the hearings was so devastating that women across the country began to call their doctors asking to be taken off The Pill. If you view politics through a lens of only the past decade or so, it might seem hard to believe that it was a Democratic senator who chaired the hearings, and it was a young Republican senator from Kansas who defended The Pill. Sen. Bob Dole virtually attacked every doctor who testified about troubling side effects.

Ben Gordon, who was Sen. Gaylord Nelson’s lead staffer said, “Dole was on our committee, and when he came, there was no question he was representing the industry.”

The industry has always been organized in promoting and defending its product. Unfortunately, the era surrounding the Nelson Pill Hearings is as close as the opposition has ever come to being organized and unified.

United We Stand

The hearings brought together doctors from all different specialties who felt The Pill had been forced upon them despite insufficient testing. Suddenly, the media was paying attention to doctors, journalists, and authors who had been expressing serious concerns about birth control safety. Perhaps most important, women (many of whom were hearing about these serious side effects for the first time) began to unite.

Alice Wolfson became the face of the hearings after bringing them to a brief halt. Along with several other young feminists, she had come to the hearings with plans to protest the senators, who she felt weren’t really listening to the voices of women. However, after hearing the testimony of several doctors, she famously stood up in the chambers and shouted, “Why are 10 million women being used as guinea pigs!?”

She became fast friends with Barbara Seaman, whose book, The Doctor’s Case Against the Pill, helped launch the hearings. Ms. Seaman later wrote about the hearings saying it brought the “uptown” and “downtown” feminists together on the issue of birth control safety. She and Ms. Wolfson would go on to found the National Women’s Health Network. To this day, it is one of the nation’s top women’s health advocacy groups.

Shouldn’t Be Left (Alone)

With all of this organized opposition to The Pill, what did the hearings accomplish?

Well, The Pill became the first drug ever required to have a patient information booklet included in each pack. I suppose that would be pretty significant if it had been written in laymen terms so people could actually understand it.

And, the drug industry responded by releasing new, lower-dose formulations, which they claimed were safer. Unfortunately, their testing was even less stringent than it had been in the original trials. In fact, none of subsequent generations of hormonal birth control have been proven to be safe.

Clearly, what we as the opposition have done thus far hasn’t been enough. It’s time for more hearings. It’s time to hold the drug companies accountable for the sad state of women’s health. It doesn’t serve you or me – it doesn’t serve the Republicans or Democrats to have women suffering with chronic ailments or even dying in the name of birth control. In the end, it only serves the bottom line of Big Pharma. Maybe that’s what they’re referring to when they keep telling us ‘the benefits still outweigh the risks.’

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Last updated on October 21, 2023 at 9:38 pm – Image source: Amazon Affiliate Program. All statements without guarantee.

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Vitamin D Plays an Integral Role in Adaptive Immunity

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Severe Adverse Reactions Include Vitamin D Deficiency and Autoimmunity

Hormones Matter researchers discovered that, inter alia, severe adverse reactions to any of the surveyed drugs trigger significant but varying autoimmune responses. Moreover, the research revealed an underlying consistency involving all reviewed drugs: vitamin D deficiency.

Vitamin D Helps Regulate the Adaptive Immune System

The adaptive immune system comprises the body’s intricate network of antibodies and special types of white blood cells (called sensitized lymphocytes ) to thwart new and previous invaders including viruses, bacteria, and drugs. When the adaptive immune system is not strong enough to endure external disruptions such as severe side effects of drugs, it can go awry by signaling antibodies and sensitized lymphocytes to attack healthy cells. This response is called autoimmunity—when the adaptive immune system’s cells do not recognize previous invaders and designate healthy cells as those invaders. In other words, the body’s immune cells attack its own healthy cells.

Scientific research over the past three decades solidifies the connection between vitamin D and autoimmunity. Vitamin D plays an integral role in the regulation of the adaptive immune system. Adequate vitamin D in our bodies can protect us from autoimmunity because adaptive immune cells contain vitamin D receptors (VDRs). These receptors are attached to the surface of the adaptive immune system’s antibodies and sensitized lymphocytes. The VDRs act as “gate keepers” by signaling what external substances, e.g., components of medications, can enter a cell. The VDRs must be replete with vitamin D to effectively regulate adaptive immunity. When the VDRs receive adequate amounts of vitamin D, they enable the adaptive immune system to function properly by attacking new and previous invaders.

When the VDRs attached to the adaptive immune system’s cells do not contain sufficient vitamin D to attack invaders, autoimmunity may kick in, causing the death of healthy immune cells. Thus, low vitamin D levels can lead to autoimmune diseases including thyroid disorders such as Hashimoto’s and demyelinating diseases including multiple sclerosis (MS).

Vitamin D and Hashimoto’s Autoimmune Thyroid Disease

The Real Women, Real Data research also uncovered another consistency among severe adverse reactions to the reviewed drugs: Hashimoto’s thyroiditis, an autoimmune disease caused by abnormal cells constantly assaulting the thyroid gland
.
Vitamin D receptors are present in the thyroid as well as the pituitary, the pea-shaped gland that controls the thyroid. Not surprisingly, low levels of serum vitamin D have been linked to Hashimoto’s thyroiditis, according to recent Turkish medical research:

Published in a 2013 issue of the journal Endocrine Practice, a study conducted at a training and research hospital in Ankara demonstrated that serum vitamin D levels of female chronic Hashimoto’s patients were significantly lower than healthy subjects. Furthermore, the researchers discovered a direct correlation between serum vitamin D levels and thyroid volume as well as an inverse correlation to the antibodies involved in the thyroid.

Researchers at Medeniyet University’s Goztepe Education and Research Hospital in Istanbul learned that 92 per cent of their 161 Hashimoto’s thyroiditis cases had serum vitamin D levels lower than 30 ng/mL (12 nmol/L), a value characterized as “insufficient.” Published in a 2011 issue of the journal Thyroid, the study reports an association between vitamin D insufficiency and Hashimoto’s thyroiditis.

Vitamin D and Demyelinating Disorders

Another disturbing outcome of the Real Woman, Real Data research is the reporting of neurological and neuromuscular symptoms, many which of are consistent with demyelinating disorders such as MS, an autoimmune disease. The development of MS occurs when a poorly functioning, adaptive immune system gradually attacks the protective covering of the nerve cells (called the myelin sheath) of the brain and spinal cord. This potentially debilitating process is called demyelination.

Scientific—primarily epidemiological—research indicates an association between vitamin D levels and the risk of developing a demyelinating disorder such as MS. VDRs exist on nerve cells and the myelin sheath. When the VDRs receive adequate amounts of vitamin D, they help protect the integrity of the myelin sheath. However, when the VDRs do not contain sufficient vitamin D, autoimmunity may occur, resulting in the death of healthy nerve cells. Numerous clinical trials are underway to assess the connection between vitamin D status and the likelihood of developing demyelinating disorders.

Low Vitamin D: The Chicken or the Egg?

The connection between low vitamin D status and the development of autoimmune disease is genuine. However, medical research has not yet determined if vitamin D deficiency plays a role in the development of autoimmune disease, if low vitamin D levels are a consequence of the disease itself, or if vitamin D deficiency acts as both a cause and effect. The authors of the aforementioned 2013 Hashimoto’s study concluded,

“Finally, our results suggested that there may be a causal relation between vitamin D deficiency and development of Hashimoto’s thyroiditis. On the other hand, there might be a possible relation between severity of vitamin D deficiency and progression of thyroid damage. However, further studies are needed especially about the effects of vitamin D supplementation on prevention and/or progression of autoimmune thyroid disease.”

Proactive Protection against Severe Adverse Reactions

We could wait years (or decades) to garner the results of further scientific studies and clinical trials to define the exact relationship between vitamin status and severe adverse reactions to vaccines and medications that culminate in autoimmune disorders. Or we could be proactive by taking daily vitamin supplements and enjoying moderate sunlight exposure to increase our vitamin D levels.

It is imperative to take enough vitamin D3 so this essential nutrient will be stored in your cells to help regulate your immune system. The greater your serum vitamin D level (easily obtained from a simple blood test called 25(OH) D, the more likely you will benefit from a stronger immune system that protects your body’s cells from attacking one another.

No one wants to endure severe adverse reactions to drugs such as Gardasil and Lupron, let alone an autoimmune disease. Attaining and maintaining adequate supplementation provides a safe, easy, and inexpensive approach to improved preventive health. By empowering yourself with adequate vitamin D, you may reap the benefits of avoiding disease and enjoying better quality of life.

Copyright © 2013 by Susan Rex Ryan. All rights reserved.

This article was published previously on Hormone Matter in September 2013.

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Thyroid Dysfunction With Medication or Vaccine Induced Demyelinating Diseases

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It is always amazing to me when seemingly disparate research articles come across my desk and within an instant there is a shift in understanding. That is what happened over the last two weeks, community members from different disease groups shared research articles. From the Gardasil community: CNS Demyelination and Quadrivalent HPV Vaccination .  From our friends at Thyroid Change: Triiodothyronine Administration Ameliorates the Demyelination/Remyelination Ratio in a Non-Human Primate Model of Multiple Sclerosis by Correcting Tissue Hypothyroidism. And I connected some dots.

Thyroid and Neuromuscular Reactions to Gardasil and Lupron

Among the more common side-effects reported by Gardasil injured and a group we are just beginning to study, Lupron injured women, include decreased thyroid function, sometimes associated with Hashimoto’s, thyrotoxicosis or even thyroid cancer. Simultaneously, but frequently viewed as separate or unrelated disease processes, both groups of women report a constellation of neurological and neuromuscular symptoms, many consistent with demyelinating disorders such as multiple sclerosis (MS). Indeed, case reports of central nervous system (CNS) demyelination or MS and Gardasil have been reported (cited above). There may be a connection between the demyelination process and the thyroid injury that develops as an adverse immune response to a drug or vaccine. More importantly, there may be a treatment opportunity.

Thyroid Hormones Affect Myelination

Almost a decade of research conducted solely in animals, rodents and monkeys, shows a connection between decreased thyroid function and demyelination disorders. Specifically, researchers found that administration of the thyroid hormone triiodothyronine (T3) not only improves the clinical course of the MS – like symptoms but effectively switches the disease process from a primarily demyelinating progression to remyelination. That is, the T3 induces cell level responses that regrow the protective myelin sheaths around CNS axons and corrects the medication-induced, tissue level, hypothyroidism. For the young women experiencing the host of neurological and neuromuscular symptoms post HPV vaccine, Gardasil or Cervarix, and/or post Lupron, this research may point to both an etiology and a treatment opportunity – disrupted thyroid metabolism mediated by an inflammatory reaction and T3 supplementation, respectively.

Dysregulated Thyroid in Critical and Chronic Illness

Vast amounts of research show a connection between thyroid function and critical and chronic illness. Hypothyroidism is common in what are otherwise considered ‘euthryoid’ or ‘normal’ thyroid individuals, but whose physiology is so severely stressed by disease or injury, thyroid function is affected. The presentation of diminished thyroid function during severe or chronic illness of unrelated etiology is often difficult to determine and its treatment is controversial. In these cases, thyroid stimulating hormone (TSH) is within the normal range in all but about 10% of patients and thyroxine (T4) may or may not be reduced. If and when further analysis is completed, T3, however, is often shown to be significantly diminished, the T4/T3 ratio is larger, reverse T3 (rT3), the T3 deactivating hormone is increased, while the enzymes responsible for converting T4 to T3 are reduced; clear evidence of disrupted thyroid metabolism that can be missed with traditional testing.

With the mixed laboratory presentation and evidence that supplementing with levothyroxine (synthetic T4) does little to improve patient outcomes, treating illness induced thyroid dysfunction is controversial, many physicians and medical organizations argue against treatment. Indeed, even in primary hypothyroidism, treatment with anything other than levothyroxine – T4 is controversial. Perhaps it shouldn’t be. The evidence reported in these animal studies, clearly indicates, T3 dysfunction and consequent supplementation controls the demyelination and remyelination process at the cell level and may improve clinical outcomes.  In this research, T3 supplementation also improved T4 levels without a concomitant onset of hyperthyroidism, the reason often cited for not utilizing T3.

What This Means

If you or your child are suffering with the constellation of symptoms associated with an inflammatory nerve disease such as multiple sclerosis and/or if you have known hypothyroid symptoms in combination with undiagnosed neuromuscular symptoms, it’s time to connect the dots. The two may be related and may require T3 supplementation. Whether these symptoms were initiated with an adverse reaction to a medication such as Lupron, a vaccine such as Gardasil or Cervarix, or by some other process entirely, the research presented here clearly suggests a role for T3 in the array of symptoms associated hypothyroid disease and CNS demyelinating diseases.

Some of the symptoms associated with MS include:

  • Vision problems (optic neuritis)
  • Numbness or tingling of the face, arms, legs
  • Chronic, unexplained pain
  • Muscle spasms – painful muscle contractions
  • Uncontrollable, often painful jerking of the arms or legs
  • Extreme fatigue and weakness
  • Dizziness
  • Vertigo (spinning)
  • Balance or gait (walking) problems
  • Hearing problems or loss
  • Seizures
  • Uncontrollable shaking
  • Breathing problems
  • Slurred speech
  • Trouble swallowing
  • Dysfunctional bladder urinating frequently, strong urges to urinate, or inability to hold in urine
  • Bowel problems – constipation, diarrhea, or loss of bowel control
  • Memory problems
  • Concentration problems
  • Language/speaking
  • Depression
  • Rapidly switching moods
  • Uncontrollable moods
  • Inappropriate moods

These symptoms have been noted in post Gardasil or Cervarix reactions, and as we are learning, in post Lupron reactions as well.  Even though these are two entirely different medications with entirely different mechanisms of action, the core reaction illness that ensues is inflammatory and often attacks the thyroid. When the thyroid is compromised, a range of other pathophysiological processes emerge, including demyelination. Certainly, additional research is warranted, but in the absence of time, and in the face of great suffering, T3 testing and supplementation may be indicated.

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. 

Photo by Markus Winkler on Unsplash.

This article was published previously on Hormones Matter in August 2013.