SUCCESS STORY: How I Recovered From the Devastating Effects of Lyme Disease

Robert and Helke Ferrie at their off-the-grid home where Helke is enjoying a new lease on life

Shocking Links Between Dementia, Hypothyroidism, B12 Deficiency, and Lyme Disease Revealed

Losing one’s mind is a horrible experience. The irony is that you need some of your mind still available to recognize that you are losing it, so you can stop the loss. This is my story of a sudden, unexpected descent into a black void from which there seemed to be no escape. Yet in the end I did escape, and am now approaching what I once took for granted as normal brain function.

To prepare for this feature, I read more than 2,000 mainstream medical articles on PubMed, downloaded about 100 for intensive study, and read a dozen books on Lyme disease, thyroid disease, and vitamin B12 deficiency.

I have never before done such an extensive survey of medical research on any topic. Why? There is nothing like personal experience to unleash my focused rage at a medical system that allows such avoidable suffering. As has been my usual experience, the published research is superb and produced by the world’s top universities, but the actual treatment of Lyme disease, thyroid disorders, and nutrient deficiencies is distorted by politics and prejudice.

According to the Canadian Lyme Disease Foundation, “Lyme is a Borreliosis caused by the Borrelia bacteria, which commonly infects animals like birds, mice, other small rodents, and deer. Ticks pick up the bacteria by biting infected animals, and then pass it on to other animals, including human hosts. There are many strains or genospecies of Borrelia that cause Lyme disease in humans just as there are many strains of the ’flu virus that cause ’flu symptoms in humans, with some strains more virulent than others.”

Thanks to the international attention which has now been focused on Lyme disease, extensive research has taught us that the Lyme bacteria can be transmitted by ticks, mosquitoes, through bird poop, sexual intercourse with an infected person, saliva from an infected dog, and blood transfusions from blood donors.

My Own Story of Infection and Recovery

In 2012, I became sick with Lyme disease. It was mostly the strain of bacteria that causes arthritis. In fact, several members of my family were infected after one of our grandchildren returned from India sick with Lyme; there she was properly diagnosed but in Canada it was a struggle getting proper treatment. Her Indian test results were dismissed by Toronto infectious disease doctors, and her Canadian test results came back as negative because it excludes testing the Borrelia species found in India. Fortunately, all of the infected people in my family were able to recover from this particular Lyme virus through treatment with Bioresonance therapy. [1]

Then in 2016, I became sick with Lyme disease a second time. After moving to Manitoulin island in 2015, we were exposed to untreated rainwater for some months from our cisterns where rainwater is collected; it is our only source of bathing water (we drank and cooked with spring water). I suspect the rainwater must have contained traces of bird droppings (which Canadian researchers have found can contaminate water with Lyme bacteria, especially in the north country). Skin contact is quite sufficient to cause infection (as the scientist after whom the Lyme bacteria are named, Willy Burgdorfer, experienced himself). Testing showed that I was infected with more than 40 varieties of Borrelia, of which the Burgdorfer strain is only one. All of these varieties have the ability to invade the brain with Lyme infection. (We now have an ultraviolet water treatment system.)

Because I am allergic to antibiotics, I was unable to take them for treatment of the Lyme bacteria. So I was once again fortunate to undergo an extended period of bioresonance vibrational therapy to clear the Lyme infection. It took almost a year and it worked, although halfway through the treatment regime I suffered a classic Lyme stroke. But fortunately I was able to regain use of my right arm and leg as well as my vision within about 12 hours of the stroke, due to immediate administration of bioresonance therapy on the day after the stroke.

There was excellent research done in Germany, Poland, and the U.S. on how Lyme bugs attack the brain and cranial nerves, causing strokes. It showed that the classic Bell’s Palsy symptom which signals a Lyme infection is caused by Lyme attacking the seventh cranial nerve.

Link Between Lyme Infection, Thyroid Disease, and B12 Deficiency

What I did not consider, while fighting this second round of Lyme infection, was that Lyme on the brain also harms the thyroid, and drastically depletes vitamin B12 reserves in the liver. Both of those problems are exacerbated by another debilitating condition familiar to chronic Lyme patients – namely adrenal fatigue. Lyme disease can cause an overgrowth of H. pylori bacteria in the gut, which also depletes B12. So for anybody with a history of stomach ulcers, like myself, a Lyme infection can cause a triple whammy to the brain, the central nervous system, and the thyroid. All are dependent on optimal levels of active vitamin B12, not just liver reserves.

From the time of infection in 2016, through the summer and fall of 2018, my deterioration progressed slowly. But by late 2018, my deterioration started to accelerate. It got to a point where I could no longer understand a written sentence unless I read it three times. So I just stopped reading. My hands and feet were always cold, my vision was getting worse, and I had to get special glasses for driving. It was only while driving that my severe balance problems and vertigo did not bother me, so I drove as often and as long as I could because that was the only time I felt like myself.

My ears were ringing all the time, making it hard to fall asleep. Fatigue became so overwhelming that the smallest chores were a pain. I slept 12 hours every night, but it was not restful sleep. And upon waking, I found the room spinning. Even watching a video was too much; I would find it hard to breathe and my heart felt like it was thundering against my chest. Only music was still a pleasure, as were our gorgeous views over Georgian Bay and the Killarney Provincial Park.

My hair became dry and brittle and kept falling out with every brushing. My fingers became stiff and it was hard to make both my thumbs touch my forefingers. My hands were too shaky for keyboarding so I bought a dictation device. My breathing was basically panting unless I sat still or lay down. When getting dressed I would often stumble and fall on the floor. My voice was so hoarse that it was difficult to keep up a conversation. I walked like a rag doll, arms and legs barely controlled. Then my right leg started to drag so I bought a walking stick.

“Who the hell is this?” I used to think when looking into a mirror. My face was swollen and looked like a pancake, my eyebrows started thinning. One day, looking at this strange face, the fog bank in my mind stopped long enough to reveal a ray of a memory, namely the book by Dr. Mark Starr, Hypothyroidism Type 2: The Epidemic (2005). Maybe my swollen eyelids caused this recall because there were so many pictures in that book of women looking like me. Or maybe it was the memory of my interviews with the late Dr. R. Kidd who specialized in thyroid issues. I asked my husband to read the book.

The Light Bulb Goes On

After Bob read Dr. Starr’s book on hypothyroidism he immediately recognized the same symptoms in me – they are very pronounced and clear even before the blood is tested. Additionally, I remembered that hypothyroidism is a common, almost inevitable, secondary health issue directly caused by Lyme infections. It was, after all, in the book I had written on Lyme [2]: the entire protocol used by ILADS is reproduced in it and specifically mentions this problem and makes B12 a mandatory treatment, in addition to antibiotics. That was when the light bulb went on! I was tested and found to be extremely low in both thyroid hormones and B12 levels. So a treatment regime was instigated by Dr. Fred Hui to bring my thyroid function back to normal, and raise my blood levels of B12 back to optimal range.

B12 is to life what gasoline is to transportation. A patient with a Lyme-damaged thyroid gland, and a brain fighting to recover from Lyme damage to the myelin sheaths encasing nerves, and also with stressed-out adrenals, can only have a hope of success if B12 is made available in very generous amounts. While it is important to get the full complex of all B vitamins together every day because they work synergistically, B12 is one of the most critical keys to health. This is because B12 performs specific tasks which are the equivalent of the energy supply for all organs and systems in the body. Once blood levels of B12 go below 300, all systems can start crashing. Also, dessicated thyroid supplements must be provided to Lyme patients with low thyroid function (the synthetic thyroid drug works only on about 40% of people; but desiccated thyroid works on everybody).

Cutting out gluten is very helpful, too. Also, avoiding all forms of fluoride (toothpaste, shower water, kitchen tap water) is absolutely necessary so that a person’s B12 reserves are not destroyed or further depleted.

Furthermore, it is vital to reject the current status quo dispensed by most doctors on what constitutes normal thyroid hormone and B12 levels. (That is, unless you live in Japan, which has the lowest rate of Alzheimer’s and Parkinson’s, or the Netherlands where they treat B12 and thyroid issues properly according to symptoms, not the one-size-fits-all tests based on poor science.) What Western medicine has accepted as “the normal range” is not based on science. You would be well advised, if you ever had Lyme or barely functioning adrenal glands, to get your B12 levels tested and get a thyroid test. Go to a naturopath, or a doctor who makes this testing available, even if it is not covered by OHIP.

I have Dr. Fred Hui to thank for starting me on this enormous research journey into the true science behind Lyme disease and recovery. If he hadn’t, Vitality might have had to publish a nice little obituary about me before the end of this year. Instead, I am almost free of symptoms today, after four months of treatment.

The following references are of top scientific and clinical quality, but so enormous as to stretch the mind. I am posting a short version here and an extended version further down, of a reading list and scientific sources, fully annotated, to help you find your way back to brain, thyroid, and adrenal health, and keep the Lyme bugs away.

Resources and References – Short List

[1] More information on Bio-resonance therapy can be found in my tribute to Dr. Korman at: https://vitalitymagazine.com/article/tribute-dr-irvine-korman-1929-2018/

Clinics where bioresonance is currently available include:

• KORMAN LIFESTYLE COUNSELLING, 19718 Kennedy Road, Sharon, Ont. (905) 473-1067
• EUROPEAN HEALTH CARE CENTRE, 168 Sheppard Ave. West, Toronto (416) 512-0247, www.ehcctoronto.com
• ECOHEALTH AND WELLNESS, Dr. Jozef Krop, MD (retired) 6517A Mississauga Road, Mississauga, Ontario Tel. (905) 816-9657 www.ecohealthcentre.ca
• On the healing power of vibrational medicine, check out the documentary: “Tesla’s Medicine: Healing Fields” by researcher Robert Connolly. Visit: www.teslasmedicine.com, email: info@teslasmedicine.com

[2] Ten years ago I published a book titled: Lyme: Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster. It helped inspire Elizabeth May, MP for Saanich–Gulf Islands, Canada’s Green Party leader, to table Bill C-442 in 2014 which passed with unanimous parliamentary support and mandates proper Lyme testing in Canada.

Although it is now national law, we still don’t have any reliable internationally-validated tests for Lyme disease. And the best that public health authorities can do is tell us to wear our pants inside our socks when walking outdoors (and similar details based on the myth that Lyme is transmitted only by ticks). Treatment, especially therapies that have been proven internationally to work, are still strictly a matter of luck in this country – or a matter of money: one can get treatment that works in Europe, India, and across the U.S. border. Meanwhile, the exploding international research into Lyme remains unnoticed here in Canada.

My Lyme book contains the still relevant science by leading Lyme experts and the treatment guidelines that actually work, developed by Dr. Joseph Burrascano of ILADS (International Lyme and Associated Diseases Society). These guidelines discuss the direct connection between Lyme disease, hypothyroidism, and B12 depletion. A deadly triad for the brain.

Lyme: Ending Denial, is available on www.amazon.ca, or through the CanLyme patient support group – email: info@lymeontario.com

Sources and Resources – Extended List

This annotated bibliography covers Lyme-related hypothyroidism and B12 deficiency. You need not have had Lyme for B12 and thyroid problems or adrenal fatigue. All of this applies to all, singly or in combination. All three can kill your brain, alone or in combination.

Probably the single most important favour you can do yourself, and no matter your age (but absolutely if you are 50 years or older) is to view the following documentary for free on that website: www.B12Awareness.org You will find two documentaries there, the second one covers everything about B12 issues.

The three best books to buy are (secondhand on amazon.ca totally affordable):

1. M. Pacholok & J. J. Stuart,Could it be B12: An Epidemic of Misdiagnosis, QUILL, 2011
2. A. Bowthorpe, Stop the Thyroid Madness, 2012.
3. A. Bowthorpe editor, Stop the Thyroid Madness II, 2014. This book is written by 14 physicians who are experts in endocrinology and many of them are professors of medicine at leading universities. Each chapter addresses specific thyroid issues including B12 deficiencies. Indispensable for a meaningful conversation with your undoubtedly skeptical GP.

H.pylori

H.pylori is a corkscrew-shaped bacterium (like Lyme and syphilis). About half the world’s population has it in the gut, but people need not have symptoms or go on develop stomach cancer because of it. Overgrowth of H.pylori makes stomach cancer 8 times more likely. Smoking and a diet low in fruits and vegetables support stomach cancer – and foods with preservatives, antibiotics, and pesticides support the growth of stomach cancer too.

The story of H.pylori’s battle with Big Pharma, as it collided with profits made from over-the-counter stomach acid-reducing medications, is told in The $800-million Pill by Merrill Goozner (2005). The Australian scientist, Barry Marshall, who established the relationship between H.pylori and cancer won the Nobel Prize in 2005.

The subsequent discovery of why cancer can happen due to H.pylori, and under what circumstances, is described by Martin Glaser in Missing Microbes – How Killing Bacteria Creates Modern Plagues, 2014.

Rodney Dietert’s The Human Super-Organism, 2016, shows how to live with H.pylori and be healthy as well. (See my Vitality articles of March, July 2016, and February 2017 for details.) The key point to all of these discoveries is the need for enough stomach acid and not to take antacids and similar medications to reduce stomach acids. Making your digestion healthy involves consumption of sauerkrauts, kimchi, and a lifestyle that avoids antibiotics.

H.pylori causes a B12 deficiency that increases over time. Once hit by another serious disease like Lyme, B12 is reduced further and this reduction can destroy the brain. The key research article on how “H.pylori is a causative agent of B12 deficiency” by A. Salam Sarari et al. is published in the Journal of Infections in Developing Countries, 2008. The consequences of H.pylori’s overgrowth for all systems, in addition to the stomach and intestines, is published in the World Journal of Gastroenterology, August 7, 2018: A. Gravina et al. Heliocobacter pylori and extragastric disease: A review.”

The diseases known to science promoted and/or caused by H.pylori are: stroke, Alzheimer’s, MS, Parkinson’s, Guillain-Barre Syndrome, a host of skin diseases, various autoimmune conditions, diabetes, varies allergies, Lupus, and anemia. This is accelerated by acid-reducing medications.

Lyme Disease

At last count, there were about 300 species of the Lyme-causing bacterium, the first to be discovered being Borrelia burgdorferi named after Swiss scientist Willy Burgdorfer (1925 – 2014). The best introduction to Lyme disease is Pamela Weinraub’s award-wining Cure Unknown – Inside the Lyme Epidemic (updated 2013). The story of how Willy Burgdorfer was infected with Lyme bacteria through contact with urine from lab animals is described in her book. Burgdorfer observed that all spirochetes (corkscrew shaped bacteria) “have an organic tropism [affinity] for the brain. That is consistent with the neuropsychiatric nature of [Lyme] patient complaints.” So, Lyme, H.pylori , and B12 deficiency can create the perfect (brain) storm. This may be why primarily psychiatrists were successful in treating Lyme disease, and not by using psychiatric medications to control symptoms.

In June of 2018, the Lyme diagnosis was upgraded by the World Health Organization. The WHO admitted that Lyme is “a political disease” and there is a need to stop the politics. For the details of how the politics of Lyme wrecks people’s health in Canada see H. Ferrie ed. Ending Denial – The Lyme Disease Epidemic, A Canadian Public Health Disaster (2010) available on amazon.ca or through BioMed Publications. In it you will not only find the relevant science and clinical solutions, but also the treatment guidelines by Dr. J. Burrascano of ILADS (International Lyme and Associated Diseases Society) whose member physicians treat Lyme by also attending to the thyroid and monitoring associated B12 levels.

The Lyme spirochete, as mentioned earlier, prefers to attack the brain. An excellent book on that subject was recently published by N. McFadzean Ducharme, Lyme Brain – The Impact of Lyme Disease on Your Brain and How to Reclaim Your Smarts, BioMed, 2017. She discusses how B12 is the most important protector of the health and repair of the myelin covering the nerves. That is one reason why a diagnosis of Multiple Sclerosis may actually be a very serious B12 deficiency, the symptoms are indistinguishable (MS causes so far also include a severe vitamin D deficiency, mercury toxicity due to dental amalgams, and Lyme disease gone untreated).

An excellent book for patients to find their way out of Lyme land is Dr. Richard I. Horowitz’s How Can I get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease, St Martin’s, 2017. An important discussion in it focuses on dementia in any form, as all are associated with severe vitamin B12 deficiency, especially Alzheimer’s. This is often totally reversible!

Dr. Robert Bransfield, a psychiatrist who specializes in Lyme, provides excellent information in an interview that is highly recommended: https://tinyurl.com/lymepsychiatricdisorders He also discusses strokes caused by Lyme in the brain. He tells of the findings showing that Alzheimer’s brains which were autopsided post-morten showed the presence of Lyme bacteria.

Highly recommended are publications on the connection between Lyme disease and hypothyroidism and adrenal fatigue – these can be caused by a Lyme infection and the depletion of B12 characteristic of all three. A website called Natural Endocrine Solutions.com provides a plain language description, and an article on https://stopthethyroidmadness.com entitled “Lyme disease and its connection to thyroid/adrenal problems” goes into the details through a case history.

The journal Frontiers in Neurology, vol. 8, 2017, provides a systematic review of strokes caused by Lyme in Europe and North America. These strokes are primarily caused by what is called Central Nervous System vasculitis, (i.e. inflammation of blood vessels). The published cases describe patients with Lyme ranging from ages 4 to 77 who suffered strokes. One of ILADS’ famous Lyme doctors, Dr. Daniel Cameron, also describes Lyme strokes and provides case histories from children on his website. Recommended also is his book Inside Lyme: An Expert’s Guide to the Science of Lyme Disease (2017). Because Lyme can bring about Alzheimer’s, Parkinson’s, ALS, and dementia in many forms, it is vitally important to read Columbia University psychiatrist, Dr. Brain Fallon’s book published this year: Conquering Lyme Disease, 2019.

Lyme is associated with not only medico-political problems but also the mythology of how one can get the infection and where. It is vital to read the research of John. D. Scott. For an overview. I recommend his presentation to the House of Commons Standing Committee on Health of June 6, 2017 (google.) One of the myths he describes is that you can’t get infected with Lyme the further up north you go. Not so, as his and other experts’ research has proven. Then there is the myth that you can’t get it except through tick-bites. In fact, it is also sexually transmitted – like all other spirochetal diseases , e.g. syphilis. Its most famous case history is that of former U.S. president George Bush. Jr. and his wife Laura. They were effectively treated by an ILADS doctor and cured. Lyme is also transmitted via blood transfusions (see Weintraub’s new edition of her Lyme book.).

Hypothyroidism and vitamin B12 deficiency

In 1998, I attended my first international medical conference. The focus was on how environmental toxins cause multi-system illness. The lecture by the late Dr. William Rae, the famous environmental medicine expert and author of several textbooks on the subject, opened with the statement: “All environmental toxins and pathogens attack the thyroid as their first target.” Any such attack will also deplete vitamin B12 reserves.

The thyroid gland is located in the front of the neck and secrets T4 and T3 hormones and calcitonin which orchestrate our metabolism, heart health, temperature, and all developmental processes. The thyroid can be harmed by Lyme and other infectious diseases, radiation, auto-immune antibodies, environmental toxins – of which the worst are fluoride (such as in toothpaste and drinking/bathing water), chloride/chlorine, bromine (found in many medications), pesticides, and nutrient deficiencies (especially depleted B12 due to vegetarianism or alcoholism), and electromagnetic field radiation. It cannot be predicted which systems get hit first because of the patient’s bio-individuality, idiosyncratic health history, and genetic inheritance. The only predictable problem is developmental damage to the fetus if the mother is deficient in B12, especially in vegetarian/vegan mothers. (That can be handled properly with vegan-friendly supplements. See below.) Hence, it is no surprise that India has the highest rate of anemia, and the highest rate of children born with B12-related brain and central nervous system damage (which affects about 60% of women and children there). (G. Zaozianlunguliu & G.S. Toeja, Micronutrient status of Indian population, Indian Journal of Medical Research, Nov. 2018.)

The early symptoms of thyroid insufficiency, vitamin B12 depletion, and certain diseases as Alzheimer’s, Parkinson’s, and ALS, are virtually indistinguishable. These include tingling in cold feet and hands, problems urinating, extreme fatigue, involuntary movements, and more. Hypothyroidism is found along with severe vitamin B12 deficiency in at least half of all cases of both. No wonder patients make so many exhausting trips to so many specialists. A very good article on the subject was published on April 29 this year in the Wall Street Journal describing the endless runaround patients experience in the UK. Download and read – excellent summary. The same mess exists in Canada.

Harrison’s Principles of Internal Medicine (current 20^th edition) is somewhat depressing on this subject. One useful statement is that B12 deficiency, associated with hypothyroidism, does not necessarily indicate anemia. It admits that all sorts of psychiatric problems are associated with these conditions, but does not mention the enormous literature on that. Most depressing of all: the treatment advice is based on no evidence at all.

The US National Institutes of Health Fact Sheet on Vitamin B12 is worse. It mentions the danger of B12 deficiency and thyroid problems if stomach acid is low, such as in older patients, i.e. over 50. But no advice is given about the medications that lower stomach acid. They mention that vegetarians are at especially at risk, but it is no longer true that B12 can only be obtained from animal products. It is available in Japan’s nori (an edible seaweed and staple of Japanese cuisine). Every health food store carries “vegan friendly” B12 supplements. See Fumio W. et al “Vitamin B12-containing Plant Food Sources for Vegetarians”, Nutrients, May 2014. Worst of all, the NIH opines that there is no evidence of a connection between B12 deficiency and mental decline. How is it possible for such nonsense to be published as authoritative, given the mass of mainstream published data contradicting this assertion?

Below is a list of important publications, all relevant to B12 and thyroid, followed by the evidence for the ongoing scandal of testing for hypothyroidism and B12 deficiency. Finally, you will read how these conditions ought to be treated and sometimes are – provided you take charge. You need to know that science is on your side! The medical practitioners and governments do not necessarily follow published science, as many of us know.

• The Nobel prize was awarded in 1934 for proof that feeding pernicious anemia patients a pound of raw liver daily saved their lives. It was also known since 1928 that such patients lacked “intrinsic factor” in their stomachs without which digestion is drastically impaired, and that was thought to be the main cause for pernicious anemia. It is still true that, with aging, less and less hydrochloric acid is available in the stomach and hence B12 becomes less available from food. It is most certainly not true that all aging people wind up with anemia. In 1948, B12 was isolated – called cobalamin. nobelprize.org The pharmaceutical company Merck finally made B12 in large amounts, something that Dr. Abram Hoffer, the psychiatrist who discovered that some forms of schizophrenia can be cured with vitamin B3, often praised them for. (A. Hoffer,Adventures in Psychiatry, Kos 2005). (NOTE: you may want to avoid cyanocobalamin – that is artificial B12; if at all possible you want hydroxycobalamin, which is totally bioavailable.)
• Vidmar et al. “Medicines associated with folate-homocysteine-methionine pathway disruption”, Archives of Toxicology issue 93, 2019. Essential for anybody with Lyme, adrenal fatigue, hypothyroidism, B12 deficiency. Here are long lists of all the drugs to be avoided: cancer drugs, psychiatric drugs, diabetes meds, all the stomach acid reducing drugs, the birth control pill, artificial hormone replacement therapy (such as Premarin), and the NSAIDS (non-steroidal anti-inflammatory drugs, like Advil etc.) and many more. If such drugs are necessary, simultaneous B12 supplementation should be mandatory. (The Pill, by reducing B12 causes depression, and then women are prescribed SSRIs, which further deplete B12.)
• Mortavzi, M. et al “Alterations in TSH and Thyroid Hormones following Mobile Phone Use”, Oman Medical Journal, October 2009. This was the first study on humans designed to ascertain if cell phone radiation harms the thyroid by reducing Thyroid Stimulating Hormone (TSH). Well it does, and it is a very disturbing article. (See my articles on EMF in Vitality’s issues of April 2011, April 2012, and May 2012) Also see https://www.emfanalysis.com/the-basics/
• Shamon A. et al. “Vitamin B12 deficiency and hyperhomocysteinaemia in outpatients with stroke or transient ischaemic attack: a cohort study in an academic medical centre.” British Medical Journal, issue 9, 2019. These researchers wanted to find out if strokes can be prevented through vitamin B therapy. “Most physicians do not realize that serum B12 in the ‘normal’ range (180-670 pmol/L does not define adequacy of functional vitamin B12.” They assert that “within the normal range of serum B12 there are many patients with metabolic B12 deficiency.” That is your brain, balance, ability to speak are on the way towards extinction. They recommend the MMA test. Totally agree! See below.
• Franques J. et al. “Characteristics of patients with vitamin B12-responsve neuropathy: a case series”, Neurological Research, 2019. The key finding here is that the very first manifestation of B12 deficiency, and often the only one, is neurological. They throw out the whole tradition, repeated ad nauseam, of B12 being first and foremost indicative of pernicious anemia. Their findings apply specifically also to diabetic neuropathy.
• Laagemat, van de E.E. et al. “Vitamin B12 in Relation to Oxidative Stress: A Systematic Review”, Nutrients, February 2019. The authors show that vitamin B12 is an antioxidant and as such reduces inflammatory processes. This insight can make the difference between your aging parents being warehoused in a long-term care facility or carrying on independently and still recognizing you. They show how this antioxidant behavior of B12 prevents cardiovascular disease, dementia, osteoporosis, and more.
• Altun, H. et al. “Homocysteine, Pyridoxine, Folate and Vitamin B12 Levels in children with Attention Deficit Disorder, Psychiatria Danubina, Vol. 30, no 3, 2018. These researchers show how ADHD can be caused by B12 deficiency in the brain that is correctable if caught early enough.
• prohealth.com, June 14, 2017. Provides a list of all the classic B12 deficiency symptoms, pointing out that they are identical to Lyme disease symptoms. They discuss how the so-called “normal” levels are in fact levels of deficiency.
• Santos, A.F. et al. “Reversible parkinsonism and cognitive deficits due to vitamin B12 deficiency”, Neurological Science, vol. 36, 2015. A classic Parkinson’s patient was treated with B12 and left the hospital to resume a normal life. In the Indian Journal of Psychiatry, April-June 2018, doctors describe an extreme case of B12 deficiency treated on antidepressants for three years to the point of brain shrinkage. He was brought unconscious to the hospital and treated with B12 shots, learned to speak again as well as move and returned to normal life in three months. His brain recovered, too.
• Whitfield, K.C. et al. “Adequate vitamin B12 and riboflavin status from menus alone in residential care facilities in the Lower Mainland, British Columbia”, Applied Physiology, Nutrition and Metabolism, vol. 44(4), 2019. It probably does not come as a surprise that the 5 residential care facilities studied provided their patients with less than optimal B12 in the food. (Since many of those residents arrived there because of a missed B12 and hypothyroid deficiency, this certainly hastens their end. How many old people using walkers have been tested for these conditions?)
• Spence, J.D., “Metabolic vitamin B12 deficiency: a missed opportunity to prevent dementia and stroke”, Nutritional Research, 2016. The author teaches at the University of Western Ontario in London, Ontario. Not only does he take on the nonsense about B12 deficiency, namely those fictitious “normal” levels, and the ignored relationship to dementia, but he also points out that “randomised controlled studies are a blunt instrument for studying vascular biology.” Which ethics committee would allow a control group to be deprived of B12, for example? And just exactly what does “low” or “adequate” levels mean? The answer to that question has not yet been established because literally nobody knows. His brain images of the devastation B12-deficient Alzheimer’s patients endured are horrifying, but his no-nonsense approach to educate the mostly somnambulant medical profession on B12 issues is truly refreshing.
• Vitamin B12 and Cognitive Function – An Evidence-Based Analysis”, Nov. 2013 by the Ontario Government Health Technology Assessment. Not only does this public health authority deny that B12 levels have anything to do with brain function, and base this on an alleged literature search, they also suggest testing should be drastically reduced because 2.9 million vitamin B12 serum-based tests were performed in 2010 in Ontario which cost a whopping $ 40 million. This, they write, is a waste of public money because B12 deficiency “has been associated with few neurocognitive disorders.” What? How is such rubbish published? However, they are right for the wrong reason: blood-based B12 tests are 50% false positive or 50% false negative. So, how about proper tests and then maybe a huge reduction in healthcare costs everywhere?
• Ismail, O. et al. “Reducing red blood cell folate testing: a case study in utilization management”, British Medical Journal, 2019. I thought I was entering a nightmare when I read this one. A study was done to show how doctors can be successfully “weaned of ordering B12 testing”. This was a project undertaken at St. Joseph’s Hospital in London, Ontario. Any physician who ordered more than 5 tests a year was targeted and received a call from a laboratory biochemist and had to justify the order to him/her. Within a year that resulted in a reduction of 98% of ordered tests! The study was based on the (totally inadequate and 100% unsupported scientifically) level of “normal” B12 set by the WHO, namely 340 nmol/L. The WHO, too, repeats old unexamined information. Modern medicine, as I found out, does not know yet what is a normal B12 level. At the 300 level, serious symptoms are recorded. The uncritical acceptance of some 70 years of B12 testing, which is based on literally zero evidence, makes this “weaning” exercise seem legitimate. This study reflects how scare tactics can be used to achieve efficient tax-dollar usage, while patients and real science are ignored.

Normal B12 Levels and Hypothyroid Treatment Scandals

My literature search on PubMed involving almost 2,000 articles on hypothyroidism, Lyme disease, adrenal fatigue, and B12 might be expected to provide some evidence to support the values used in current blood B12 tests. Yet my literature search provided no evidence whatsoever on how those levels on “normal” or deficient were arrived at. I went back to 1934 in my search. Nor did I find anything that justifies the current conservative treatment: a shot of B12 for 7 days and then either one per week for a few weeks, or one per month for a while – no specifics, and no two instructions ever seem to agree. The seriousness of the case is also not considered at all.

Maybe it was my fault for not finding the information, but then I was amazed to find politely worded outrage among the experts in the journals that publish research on testing in medicine. They, too, were outraged, and I wondered with mounting alarm about how many doctors read those journals. The two most important ones are Blood Transfusion (2013) and Blood (2016). A truly amazing example came from doctors in Canada, published in 2000 – that date approaches almost a generation ago! Nothing has happened since, however, to make this B12 testing scientific nor has anything happened to adjust the current thyroid tests to published science.

Following are the most important major journals critical of those mythical B12 levels as currently tested. Other tests exist which are a lot more reliable, but they are only used upon request and often need to be paid for personally. Just to make sure, this is not my bias selection: there are NO articles in favour of these tests that I could find. There are only articles that assume these tests are right and then get into trouble in their interpretation of symptoms because the test results don’t conform.

1. Olson, S.R. et al. “Time to abandon the serum cobalamin level for diagnosing vitamin B12 deficiency”, Blood, issue 128, 2016. They point out that the evidence shows that this blood test usually measures total B12, even though 80% of all B12 circulates in the blood without doing anything – in “inert form”. So, when a measure is 200 pg/ml, the deficiency is in fact so bad, that now we “have severe signs and symptoms” and what they call “a fulminant deficiency”. That is medicalese for “really, really bad”. What is recommended instead, is the so-called MMA (methylmalonic acid) test which measures the function of B12. It exists as a urine test also. In my case B12 was at 259 – i.e. really, really bad – but just fine as far as the Ontario government is concerned. I actually don’t know how bad my B12 deficiency is because that number reflects total B12 in me, not what amount is actually doing the job for me. The authors do not inform as to what level would be OK because they assert the test based on blood and total B12 is no good at all, ever, and keeps a lot of people sick. The blood test should be abandoned, as the title of their paper states.
2. Scarpa, E. et al. “Undetected vitamin B12 deficiency due to false normal assay results”, Blood Transfusion, October 2013. These authors critique the blood test for B12 as the ones above do, but with a lot more laboratory jargon which most interestingly suggests that 1,000 pg/ml is more like normal. Indeed! Babies are born with at least 2,000 pg/ml without which they wouldn’t develop into full grown people. Since repair becomes increasingly important through time, why would those absurdly low levels be fine by the time we are 80?
3. The two “guideline” articles also deplore the unreliability of this blood test. If guideline authors aren’t happy, how is the practising physician supposed to feel? They are: Devalia, V. et al. “Guidelines for the diagnosis and treatment pf cobalamin and folate disorders” British Journal of Hematology, June 18, 2014. And Stabler, S.P., “Vitamin B12 Deficiency”, New England Journal of Medicine, January 10, 2013.
4. Lachner, C. et al. “The Neuropsychiatry of Vitamin 12 Deficiency in Elderly Patients”, Neuropsychiatry, online published Jan 1, 2012. In addition to criticizing the current blood test, they point out that individual needs differ drastically especially with age and the stress of pregnancy and illness. They agree, that doctors need to go by signs and symptoms, not test result values nobody knows where they came from.
5. Moore, E. et al. “Cognitive impairment and vitamin B12: a review”, International Psychogeriatrics, 2012. They state that values of 250 pmol/L are associated with Alzheimer’s (I was at 259!), vascular dementia (e.g. Lyme brain?), and Parkinsons’s. They assert that all these dementias are “reversible with vitamin B12” and that it is inexpensive and safe to do so. They call for something like a revolution to get this right at last.
6. Aparicio-Ugarriza, R. et al. “A review of the cut-off points for the diagnosis of vitamin B12 deficiency in the general population”, Clinical Chemistry and Laboratory Medicine, vol. 53(8), 2015. Being a review article it goes over the entire antique thinking from which blood test stems and winds up demanding change. Harrington, D. J., “Laboratory assessment of vitamin B12 status”, Journal of Clinical Pathology, vol. 70, 2017, starts by telling readers that the usual test is no good and has got to be discarded for something better. The MMA test is a good start, according to him, but what is needed right now, before we agree on and develop decent tests, is to treat people without tests, if signs and symptoms of neurological problems are observed. That fits very well with an excellent article from ages ago (1988!) by Lindenbaum, J. et al. “Neuropsychiatric Disorders Caused by Cobalamin Deficiency in the Absence of Anemia or Macrocytosis”, New England Journal of Medicine, June 30, 1988. We have known for so long that B12 deficiency not only signals anemia but more often the destruction of the brain and the central nervous system. Yet, we need to be reminded again 27 years later in Shipton, M.J. et all. “Vitamin B12 deficiency – A 21^st century perspective”, Royal College of Physicians – Clinical Medicine, April, 2015.

There is a glorious exception: Japan. We buy their cars by the millions but don’t look at their way of doing medicine. In Japan, any tested value for B12 below 550 must be treated! Their idea of “normal” is a minimum of 1,300. They also happen to have the world’s lowest incidence Alzheimer’s, Parkinson’s and dementia in general. Similarly, the Dutch are also truly informed. They, too, don’t believe in the B12 level that we are victim to here. They tested volunteers giving them 10,000 times the amount of B12 given elsewhere in one day! No side effects. They also don’t believe in giving 1 shot daily for a week – that whole treatment regime that has no scientific justification, but is just “habit”, as the journal Blood opined. They point out, instead, that just because the injections seem to raise the total B12 levels, it does not mean that the part that actually works for us (20%) is now available. You don’t know if you are OK until the symptoms disappear, at which point you could stop the shots and wait and see if more is required. (www.stichtingb12tekort.nl) That could be weeks of shots and then less shots for life.

(NOTE: the European Federation of Clinical Chemistry and Laboratory Medicine is changing B12 values a little, too – certainly better than in Canada and the USA.)

The clinical director of the Canadian College of Naturopathic Medicine in Toronto, Jonathan Prousky, has learned from the Japanese. When he treats B12 deficient patients, he is happy when their levels are at 2,000 or more. I highly recommend his article “Understanding the Serum Vitamin B12 Level and its Implications for Treating Neuropsychiatric Conditions: An Orthomolecular Perspective”, JOM, Vol.25, 2, 2010. He specifically discusses Japan in that study.

How did we get into this mess? I did find a partial answer. In the November 14, 2015 issue of the British Medical Journal, a number of letters are published that are responses to a previous article. One response was sent by a freelance researcher, Karen L. Thompson, in which she relates an amazing historical fact. She tells us that in the early 1950s a number of researchers were divided into two groups. One group was charged with finding out what the tests and treatments should be for B12-deficiency induced anemia. Finding out “the effective dosage for treating neurological injury was assigned to another team at a hospital in England. Because at the time it was believed that the anemia caused the neuro damage [not neuro damage without anemia due to the deficiency] then, once the first team had established dosages effective for reversing anemia, it was this information which was released by Glaxo [where the research was done] – the effective treatment for neurological injury was archived – and there is remains.” (Emphasis mine.) So, we have the answer for how automatic pilot was engaged for B12 deficiency diagnosis and treatment. We just don’t know why we are still there.

Hypothyroidism testing is almost as bad, but thankfully not completely so. This condition is visible when it gets really bad – it is a disease of edema, especially in the face, called myxedema. If you start to wonder who that is in the mirror, it is time to think of your thyroid. But there is a lot of money to be made in treating it with the standard drug Synthroid. Big Pharma has taken over so completely that doctors rarely know that hypothyroidism used to be treated most successfully with desiccated thyroid derived from pig thyroid glands. Synthroid works for possibly 40% of patients because they happen to have the prerequisite enzymes that convert the thyroid storage hormone, called T4, into the active service thyroid hormone called T3. Those who lack that conversion enzyme are quite literally ignored and usually left untreated or given antidepressants. Modern, standardized desiccated thyroid, which works for everybody, is cheap, available everywhere and produced by international pharmaceutical companies.

To be assessed, and then treated in a way that actually works, requires taking charge yourself and probably going to a naturopath (they are allowed, since 2015, to do just about all tests known to medicine). Doctors who test and treat both B12 and hypothyroidism, such that you actually regain your health, are very few (but with the flood of recent papers may increase). Fortunately, it is possible to get around this testing mess if you know how. One excellent route is the testing of methyl malonic acid that needs B12 to be metabolized. If it is elevated you are deficient in B12. You have to pay for it (about $150). Homocysteine is also elevated in B12 deficiency. B12 normalizes homocysteine and instead of possibly facing a bypass operation, you may bypass that with a vitamin.

The currently used thyroid test is also often misinterpreted, just as the B12 test. Normal is not normal. Normal differs for many reasons and needs to be ignored in favour a careful history of symptoms. These symptoms generally are: extreme fatigue, depression, weight-gain, dry skin and eyes, excessive hair loss, memory and concentration problems, apathy, constipation, inability to be involved in sports anymore, dead sex drive, etc. You will note that this is pretty much the same as in B12 deficiency, except in hypothyroidism you have swollen, puffy eye lids and bags under the eyes and your face begins to look like a squashed pancake as time passes. Most diagnostic for B12 deficiency are the lack of balance and unsteady gait, problems with reading and comprehension, word usage problems and air hunger. My thyroid level was so extremely out of whack, that even this poor test pinned the problem down as dangerous.

Short of moving to Japan or the Netherlands, where thyroid and B12 matters are routinely treated properly, the first thing you can do for yourself or a loved one, is to watch the B12 documentary mentioned at the top, and buy the books mentioned at the beginning of this source list. Before you try another weight-loss diet that is likely to fail; before you consider plastic surgery for your sagging, puffy face; before you succumb to yet another toxic anti-depressant drug; before you put a relative in long-term care; before you consent to a whole lot of tests for heart and brain and more; before you begin to think death might be nice – before all that, inform yourself, get tested (preferably with the MMA), buy fluoride-free toothpaste, and begin the hunt for a doctor or naturopath who will listen.

I am available by e-mail helkeferrie@gmail.com.