unraveling symptoms and syndromes

Unraveling Symptoms and Syndromes

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What Is a Syndrome?

A syndrome is the name given to a collection of symptoms and physical signs that have been observed in the past in a single patient or in a group of similar patients. This is often named after the first person to report this set of observations. It is called a syndrome when others have made the same observations, sometimes years later. The terminology is purely descriptive, even though there may be a constellation of abnormal laboratory tests associated with the clinical facts. Unfortunately, the underlying cause is seldom, if ever, known.

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). In a review, it is described as a “challenge to physicians”. Its prevalence is reported as approximately 1% in the general German population. The author states that there are no convincing models that might explain the underlying cause as an independent unique disease. A variety of conditions such as chronic infectious disease, multiple sclerosis, endocrine disorders and psychosomatic disease are suggested in a differential diagnosis. There is said to be a significant overlap with major depression.

Another review describes CFS as characterized by debilitating fatigue that is not relieved with rest and is associated with physical symptoms. In order to make the diagnosis, these authors indicate that at least four of the following symptoms are required to make the diagnosis. They include feeling unwell after exertion, unrefreshing sleep, impaired memory or concentration, muscle pain, aching joints, sore throat, or new headaches. They also say that no pharmacologic or alternative medicine therapies have been proven effective.

Fibromyalgia Syndrome

According to the American College of Rheumatology, fibromyalgia syndrome (FMS) is a common health problem characterized by widespread pain and tenderness. Although chronic, there is a tendency for the pain to fluctuate in intensity and location around the body. Deficient understanding of its true cause gives rise to the false concept that it is neurotic. It is associated with chronic fatigue and patients often have sleep disorders. It is estimated that it affects 2 to 4% of the general population and is most common in women. It affects all ages and the causes are said to be unclear. FMS patients may require psychiatric therapy due to accompanying mental problems. Gonzalez and associates concluded that the combination of psychopathological negative emotionality, interpersonal isolation and low hedonic capacity that they found in a group of patients has implications for the daily living and treatment of these patients.

Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is another common and disabling disorder, characterized by defective autonomic nervous system function and inflammatory features. It reportedly occurs acutely in about 7% of patients who have limb fractures, limb surgery, or other injuries, often quite minor. A small subset of patients progress to a chronic form in which autonomic features dominate. Allodynia (pain due to a stimulus that does not usually provoke pain) and hyperalgesia (increased pain from a stimulus that usually provokes pain) are features of CRPS and require a better understanding.

Sleep Apnea Syndrome

Apnea is the term used for a temporary cessation of automatic breathing that usually happens during the night. This syndrome is described as the most common organic disorder of excessive daytime somnolence. Its prevalence is highest among men age 40 to 65 years and may be as high as 8.5% or higher in this population. It is associated with cigarette smoking, use of alcohol and poor physical fitness.

Similar Cause with Different Manifestations

Complex Regional Pain Syndrome is related to microcirculation impairment associated with tissue hypoxia (lack of oxygen) in the affected limb. Without going into the complex details, hypoxia induces a genetic mechanism called hypoxia inducible factor (HIF-1 alpha) that has a causative association with CRPS. It has been found that inhibiting this factor produced an analgesic effect in a mouse model. The interesting thing about this is that thiamine deficiency does exactly the same thing because it induces biochemical effects similar to those produced by hypoxia (pseudo[false]hypoxia). A group of physicians in Italy have shown that high doses of thiamine produced an appreciable improvement in the symptoms of three female patients affected by fibromyalgia and are probably pursuing this research. Dietary interventions have been reported in seven clinical trials in which five reported improvement. There was variable improvement in associated fatigue, sleep quality, depression, anxiety and gastrointestinal symptoms.

Dr. Marrs and I have published a book that emphasizes deficient energy metabolism as a single cause of many, if not all, diseases. The symptomatic overlap in these so-called syndromes is generated by defective function of cellular metabolism in brain. Fatigue is the best symbol of energy deficiency and the English translation of the Chinese word beriberi is “I can’t, I can’t”. Fatigue is a leading symptom in beriberi. When physicians diagnose psychosomatic disease as “it’s all in your head”, they are of course, quite right. However, to imagine or conclude that the variable symptoms that accompany the leading one of fatigue are “imaginary” is practically an accusation of malingering. The brain is trying to tell its owner that it has not got the energy to perform normally and the physician should be able to recognize the problem by understanding the mechanism by which the symptoms are produced. Every thought, every emotion, every physical action, however small, requires the consumption of energy. Obviously we are considering variable degrees of deficiency from slight to moderate. The greater the deficiency the more serious is the manifestation of disease that follows. Death is a manifestation of deficiency that no longer permits life.

Our book is written primarily for physicians, but it is sufficiently lacking in technological language to encourage reading by patients. It emphasizes, by descriptions of case after case, the details of how genetic risk and failed brain energy are together unable to meet and adapt a person’s ability to meet the daily stresses of life. Stress, genetic risk and poor diet all go together. A whole chapter discusses the functions of the autonomic nervous system and how it deviates when the control mechanisms in the lower brain are defective. This system is the nervous channel that enables the brain to communicate the adaptive body actions necessary to meet living in an essentially hostile environment. We show that an excess of sugar and/or alcohol produce deficiency of vitamin B1 and the so-called psychosomatic disease that results is really early beriberi “I can’t, I can’t”. Variability in symptoms caused by this effect is because the cellular energy deficiency distribution varies from person to person and is affected by genetically determined differences.

This is illustrated by the case of a boy with eosinophilic esophagitis whose first eight years of life were marked by repeated diagnoses of psychosomatic disease. At the age of eight, upper endoscopy revealed the pathology in the esophagus. There was a family history of alcoholism and he was severely addicted to sugar. Many of his symptoms cleared with the administration of a thiamine derivative and resulted in a dramatic increase in stature. No pediatrician or other physician whose attendance was sought through those first 8 years evidently had ever questioned diet or the gross ingestion of sweets. They simply treated each condition as a confirmation that they were “psychological”.

It is worth noting that references 1 through 4 refer to both CFS and FMS syndromes being affected by psychological issues. This implies that the patient is “inventing” the poorly understood (and often bizarre) symptoms as a result of neurosis. The unfortunate complainant may easily become classified in the mind of the attendant physician as a “problem patient”. I have become aware that this can rise to such a degree of misunderstanding that the patient is denied access to the physician and even to other physicians in the same clinic. It is indeed about time that an overall revision be made to the absurd concept that the brain can “invent” a sensation that has no importance in solving the electrochemical problem. When we see the statistics of incidence of these common syndromes we have to conclude that there is an underlying cause and effect that pervades the general population. We are very conscious that our cars need the right fuel to work efficiently but rarely take it into consideration that the quality of food is our sole source of energy synthesis.

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Image credit: J. KAPUSTA/IMAGES.COM/CORBIS

This article was published originally December 2019. 

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Derrick Lonsdale MD, FACN, CNS

Derrick Lonsdale M.D., is a Fellow of the American College of Nutrition (FACN), Fellow of the American College for Advancement in Medicine (FACAM). Though now retired, Dr. Lonsdale was a practitioner in pediatrics at the Cleveland Clinic for 20 years and was Head of the Section of Biochemical Genetics at the Clinic. In 1982, Lonsdale joined the Preventive Medicine Group to specialize in nutrient-based therapy. Dr. Lonsdale has written over 100 published papers and the conclusions support the idea that healing comes from the body itself rather than from external medical interventions.

15 Comments

  1. I’ve just ordered Lipothiamine for Long Covid after reading your excellent work. I had severe ME/CFS for 8 years 20 years ago and I believe, have had FM my whole life.

    My main question: I’ve always been extremely affected by weather. I can have all the energy in the world for a day or a week or…ex: teach two back to back power yoga classes, followed by a high intensity interval training workout and then work a full day in my business. And feel fine the next day and do it again.

    Unless there is weather coming in. In which case I can’t get up off of the sofa and/or sometimes the FM pain gets so intense during those times. Or if it’s a high pressure system, can’t get to sleep and/or have trouble breathing and/or restless leg. Other various specifics, but that’s the basic idea.

    And of course, there’s always weather coming in most places. I currently live in the southeast, so lots of weather here. My energy levels are all over the place. When I lived in Los Angeles, I had much more consistent energy and high energy.

    As I said, this has always been the case for me, even when growing up. I didn’t realize it was weather at that point. But I would miss school because of it. Or I’d achieve an incredible amount in a very short amount of time.

    We’ve always known that my ANS is funky…I have hyperhydrosis as well. But I have never found any information about what would cause my body to respond so strongly to weather or what I can look into to do to alleviate it. And I have looked and asked…for decades (I frankly no longer go to doctors because of my experience with CFS those 20 years ago…I am my own best doctor and advocate).

    Do you have any theories or speculations as to the “why”?

    And especially any suggestions for what I can do? Or just the B1 (+mag) protocol?

    I’m curious to see if the B1 will even the energy out once I’ve gotten past the Long Covid (it’s mild…no longer experiencing PEM, but still have some lingering symptoms). I would love to hear your thoughts on the weather thing.

    PS. I eat a carnivore diet with lots of fatty fishes, fatty meats, egg yolks, organ meats, bone broth, etc. I’m also currently dealing with oxalate dumping and am working on addressing that in various ways. In the past, I’ve eaten protein heavy 90% paleo for 20 years (very few carbs…just never agreed with my body once I went paleo).

    Thank you so very much!

    • I am a great advocate of Hans Selye who researched stress in animals. He published the details of the General Adaptation Syndrome (GAS) that required energy to resist the stress. He said that human diseases were “diseases of adaptation”. A student of his reproduced the GAS by simply making the animal thiamine deficient. Evidently weather is for you a source of “stress” . My interpretation is that you are a high energy consumer and weather makes extra demands. Try taking a supplement of 100 mg thiamine and 150 mg of magnesium a day and see if it modifies the next dose of weather. Let me know.

      • Very interesting. “Diseases of adaptation.” Your further interpretation completely makes sense to me…for some people external situations or emotions or…whatever…are stressors. For my body (a “high energy consumer”) it’s weather. Therefore I’d need more thiamine during those times of stress. Very cool, Dr. L. First explanation I’ve ever run across that resonates. (Well…first possible explanation anyone has ever given me, really!!!)

        I’ve just started 600mg Thiamine HCl because I had it lying around…waiting on the Lipothiamine to get here. Usually take 100mg mag/day, I’ll up it to 150.

        Still dealing with residual Long Covid symptoms (including fatigue, POTS, etc), so it may take some time for me to know for sure if the weather issue has been ameliorated by your recommendation, but I’m optimistic 🙂

        I’ll let you know, definitely. Thank you for your fast response, for the valuable information and for your very in tune hypothesis!

        • Thought I’d let you know what my experience has been thus far (also for those who are just starting their Thiamine journey and/or have Long Covid or ME/CFS/FM). It’s still very early on (first week), so I’m not expecting to have any definitive results at this point.

          Please keep in mind that 1. The weather has been all over the place, so it’s hard to know what’s weather and what’s thiamine. 2. I’ve also just gotten up to taking full dosages of 12 beef organ supplements, so there’s a lot happening with that as well. Again, not a great way to do an experiment. But when I listened to internal guidance, this is what felt right and thus far it’s serving me well!

          3/19: started Lipothiamine 50mg + 100mg mag citrate (take citrate form to assist oxalate reduction) + transdermal magnesium morning and evening. Seemed to feel a good bit better after taking the Lipothiamine. More even emotionally. Still wanting to sleep all day.

          3/20 – 3/23: 100mg Lipothiamine 100mg + same as above. Increase in symptoms like peripheral neuropathy, balance issues, POTS, tachycardia, anxiety, etc. Decreased every day.

          3/24: Woke up with hands sweating like crazy…dripping. Tells me ANS was doing interesting things! Also recognized that…I’d been taking the B1 + mag first thing in the morning and realized I had more energy before taking it. Started taking it in PM, which is currently the best time to take. Alleviated the feeling like I needed to sleep all day and lack of focus thing. Continued PM for B1 and oral mag here on out.

          3/25-3/26 (which is today): Started trading off 115mg mag glycinate (+ transdermal am and pm still) and 150mg mag citrate every other day. Lots of energy yesterday and earlier today…definitely weather related. Had a warm weather spike come in, which is typically much higher energy for me. Now cold front about to come through (just looked) and sure enough, my energy dropped significantly starting about an hour and a half ago.

          I’ll continue to update every week or two. Thank you for this wonderful website and for all the information!

  2. Dear dr Lonsdale and Marrs
    Thank you so much for your work and for the time you spend to let us know about all this stuff.

    I’m young girl (26 yo), I’ve been sick for about ten years: CFS, dysautonomia, low T3 and T4, SIBO, GastroIntestinal problem like delayed gastric emptying. I have olso problem whit weight, I have a tendency to gain weight, I am always on a diet and I eat very well and healthy.
    I have also mood swings that sometimes make me feel crazy. I feel without energy in my muscles and I feel I can’t do anything (although above all this I was a girl full of energy and always very cheerful)
    After reading your site I was sure my problem was low thiamine, so I started with B1HCl 20mg a day intramuscular 8 weeks ago.
    Is it possible I don’t see results (I have read on your website that healing begins between the fourth and sixth week after the onset of thiamine).
    I also integrate B12, B2, biotin, myoinositol, magnesium citrate and treonate.
    Do you think I may still have thiamine deficiency? (next week I’ll get allithiamine, can’t wait to get started).
    According to you I have to integrate something else?
    I’m missing a piece of the puzzle.
    I really thought I was solving the problems with thiamine, I bought your book too, but I can’t figure out what else I have to do … do I have to supplement the potassium? and the other vitamins? how do I know if my neurotransmitters are working well.
    Do you know the problem of under-methylated or over-methylated?
    I hope you will read this post and answer me sincerely with your advice

    Thank you very much
    Thank you for sharing your experience
    Thank you for saving life of many people

    Goodbye
    Claire

    • Well, of course I don’t know the answer to your question. You certainly have symptoms that I would put down to energy deficiency, but the machinery is very complex. Fortunately, I have found that many people with these symptoms do in fact respond to megadoses of thiamine. But there are many surrounding issues which complicate it, not the least of which is the genetic background. I can only suggest that you try the allithiamiine and magnesium, together with a multivitamin. In some cases intravenous vitamins are necessary and that is subject to a shortage of doctors that understand the principles involved.

      • Thank you so much for your rapid reply
        In the next few weeks or months, I hope to come back here to tell you that I am getting great results and that I am finally recovering.
        Thanks for the work you do.
        Thank you!
        Claire from Italy

        • I take super high doses (500-750mg) and get dysautonomia/neuropathy results. You might also have other issues that need to be individually resolved, even if they are all related. Check out some of the interviews at https://www.youtube.com/c/drmarkhyman/videos – they’ve been super helpful for me. You’ll get tons of ideas for what to try, how much you need to optimize (e.g. if you’re gluten sensitive, you might need to cut *all* gluten and not just *most* gluten), how drastic your changes need to be, etc. Hope you feel better!

          • Thank you so much for your reply
            I will look at the mark Himan page right away.
            I’ve tried a lot of therapies since I’ve been sick,10 years 🙁
            I am sensitive to gluten and I agree with you about eliminating it completely (I did the same with milk and dairy).
            I am grateful for your comment. Any other advice is welcome
            Virtual hug
            Claire, Italy

  3. You seem to be out dated as regards functional neurological disorders (FND). CFS is not FND where CRPS and fibromyalgia are. They certainly are not “Mystery” illnesses and no longer count as “Medically Unexplained” neither are they “all in the head” however you look at them. They are only counted as “Psychosomatic” because there is a malfunction in conscious and unconscious processing in the brain – a great deal of research concentrated on the amygdala at first, but there are other changes in the FND brain.

    A great deal more is now known about FNDs largely through the work of Prof Mark Edwards at St Georges, London and Prof Jon Stone at Edinburgh and thankfully a great many more joining in the research of what has been rightly described as a “crisis in neurology”.

    Please do the FND community a great favour by becoming better informed. Especially as I believe you and your research could be useful . The symptoms are caused by a build up of glutamate in areas of the brain. Areas shrink and consequently malfunction – people can recover. There is no overlap with non-FND patients. Scans can indicate prognosis and severity of the illness. They also include movement disorders and functional seizures.

    I could go on but you could start by visiting FND Hope and neurosmptoms.org

    I certainly found that having FND due to a sulfite sensitivity was no fun at all. I certainly feel that nutrition in FND needs a closer look, but as Prof Edwards often remarks “there is no panacea for FND”. I do believe, as do many of the researchers, a multidisciplinary approach is needed and that your input could be of great value, but first please do some updating. FND patients make up 30% of neurology referrals. Over a 14 year follow up 11% of FND patients had died, heart disease being the most common cause (Stone et al).

    • I saw many cases of what you call FND and virtually all of them responded to megadose thiamine. With so many different symptoms responding to thiamine and magnesium, I had to conclude that all of these “different diseases” were deficient in energy metabolism.

  4. Hi this is what DR JACK KRUSE has to say about B1 and Mirochondria

    The conversion of tryptophan (Trp) → nicotinamide (Nam) is an important pathway for supplying vitamin niacin to make NAD+, serotonin, and melatonin. The key reasons these matters are tied to the following two phenomena: (1) severe calorie restriction led to an increase in the Trp → Nam which can augment NAD+ in aging and in disease generation to extend survival; (2) the conversion of Trp → Nam is also increased by a vitamin B1 deficiency. This begs the question………..does B1 deficiency confer a survival advantage by creating a pseudohypoxic state in mitochondria that are badly damaged? The answers in this new blog and new series might surprise some of you.

    Did you know the production of Nam from Trp is important for maintaining cellular NAD+ concentration? For example, half of the niacin supply is accounted for by Trp intake. Tryptophan is an essential aromatic amino acid. Many environmental effects of light affect various factors on the conversion percentage of Trp → Nam and most people seem oblivious to this fact. It has been well researched and reported that vitamin B1 deficiency increased the conversion percentage of Trp → Nam. Now ask yourself what this implies and what the collateral effects of this might be in a world built around alien lights? https://www.patreon.com/posts/32419906

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