A bit of information about me: I am 24 year old man. I have always been fit, always exercised at least 5 times a week, and have had physical jobs. I never really cared about what I ate and my diet consisted of a load of protein (mainly protein shakes and chicken) with massively high carb/sugar consumption. I went out drinking with friends on most weekends. About two years ago, I had COVID and since then my health seemed to decline massively. I did not see a doctor initially, because I was not aware of how bad my health would become.
About a year after having COVID, my anxiety levels were through the roof. It was so bad, I couldn’t even leave the house without worrying something was going to happen. The symptoms I developed included: a change in personality, hand a feet neuropathy, shocking circulation to hands and feet, severe bowl issues, really low body temperature, extreme fatigue to the point where I was unable to get off the sofa after work most days, memory problems and an inability to think.
A year into this, I realized that I had to do something about my health. I was literally at breaking point. I did not know what was going on with my body or mind. At first, I thought I was diabetic because I matched so many symptoms but blood test showed normal sugar levels. I went back to the doctors numerous times. They basically told me that I was mad. They told my family all my symptoms and that I was really struggling, but no one believed that I was ill. They said it was all in my head and led me to believe that I was actually going mad.
Heart Problems, Breathlessness, and Thiamine Deficiency
Then the heart problems started. I have always played football, since I was 10 years old, and I have always been extremely fit, but I began having trouble breathing when playing. It gradually got worse and I became unable to walk the stairs without becoming breathless. As the breathing problems worsened, I had to stop all exercise. The exertion seemed to make me worse.
At this point, I was positive my symptoms were not imagined and so I did endless research online and found a video by Dr. Berg about thiamine/vitamin B1. I ordered some Benfotiamine and it definitely seemed to help. The anxiety vanished almost instantly and most of my symptoms went away except neurological ones. So I took about 4 tablets, 250mg each, per day for about 9 months. After this time, I felt I was not progressing any further. I thought I would never get circulation back in my hands and feet. My brain was still confused all the time and my breathing became slightly better but it was still nowhere near where I wanted to be.
I returned to internet for research and found Elliot Overton’s YouTube channel and ordered some TTFD, b-complex, magnesium, potassium. Thiamega, the product from Objective Nutrients, has 100mg thiamine HCL, 200mg Benfotiamine, 50mg Sulbutiamine and 50mg TTFD. At first, the paradox reaction, getting worse before getting better, was absolutely shocking. I remember being on the sofa each weekend and just sleeping most of the day. The brain fog was the worst it had been for months but after maybe a month that seemed to clear up and my brain problems seemed to have massively improved.
I forgot to mention earlier that prior to beginning supplementation with Benfotiamine and then TTFD, I had a private MRI scan on my brain. It showed high T2W right signal – a sign of lesions and demyelination and confirmation that I had thiamine deficiency. So, I went for another MRI with contrast recently to see if I have improved any. I am still waiting for the results on that one.
Improved But Still Missing Something
I am at the point now, where I feel I am back to normal health with most of my symptoms improved. All that remains to be resolved are the circulation and breathing problems. The rest do seem nearly resolved.
I have recently tried the carnivore/keto diet, but I usually get to day 3 or 4 and have to stop because it seems to make my symptoms worse especially the breathing and circulation. My current diet is mostly whole foods, with high protein, high fat and lower carbs. I try and eat a lot of red meat and that seems to help.
I was wondering if there was anything I can do to repair this issue, or is it for life now? Sugar and alcohol definitely seem to make me worse, but then so does keto and so I am unsure what to do. Maybe if I manage to push past the first week on keto I would feel better and my nerves would start to repair? All I know is that I must have had a serious case of beriberi disease, which has caused all this damage to my body. Obviously, I know it is my fault for not taking care of my diet, but I also feel the doctors are partly to blame as they seem to know absolutely nothing about thiamine deficiency. All they want to hear about is anxiety and depression. Any help at all would be massively appreciated. Thanks.
Photo by Paul Zoetemeijer on Unsplash.
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You might also want to supplement with moderate to high dose vitamin d3 and get as much sunlight and daylight as possible. If you live up North, invest in a uvb light for winter d3. Covid is known to interfere with absorption of d3 and tryptophan (a precurser of niacin/b3). So consider supplementing with niacin. Nattokinease may help too. Magnesium, zinc and b complex are essential too. I reversed my peripheral neuropathy by implementing a strict ketovore diet, no sugar, extremely low carbs, the aforementioned supplements, OMAD plus extended fasting, spending as much time as possible outside, four 15 minute bursts of exercise throughout the day plus walking in the am and pm plus a 1 mile run.
You might read my article about Dr. Thomas Levy’s approach to Chronic Covid and the risk of sudden cardiac arrest.
Title- Preventatives For The New Scourge of Covid Sudden Cardiac Arrest
LINK
https://www.lewrockwell.com/2023/10/wayne-lusvardi/preventatives-for-the-new-scourge-of-covid-sudden-cardiac-arrest/
Intuitively, you need Iron if you have trouble breathing – Iron makes the hemoglobin in red blood cell to produce oxygen in lung.
I take as much as 2,000 mg of Thiamine as I have an oxalate issue that causes my right arm to tremor but disappears with B-1. But you must ramp up Thiamine slowly not all at once.
According to Bruce Aames, PhD, UC Berkeley, plant foods contain 10,000 x more poisons and toxins than anything industry puts in food. All plants have natural pesticides (oxalates, lectins, tannins, etc). to deter insects, worms and predators. My opinion is plant foods should not be eaten unless boiled, fermented, pressure cooked, sprouted, diluted with water and then eaten with massive enzymes and stomach acid to break it down.
LINK https://www.acsh.org/news/2018/06/07/9999-pesticides-we-eat-are-made-plants-12962
There is a golden rule in treating beriberi-like or pellagra-like symptoms: whenever an individual has a B1 deficiency, he has a B3 deficiency as well, and vice versa.
For me, the most impactful thing for eradicating shortness of breath was B3 in the form of nicotinamide riboside. I also wrote an article with my story here, it may give you some hints. In addition, anything containing thiamine inhibitors should be temporarily excluded from the diet until you reach a full recovery. It applies to: coffee, tea, alcohol.
Thank you so much, alcohol definitely brings on more symptoms, what’s your thoughts on sugar aswell? Because that does seem to make it worse at times, also once I’m fully recovered will I be able to consume alcohol/coffee again or not?
Sugar is thought to be as detrimental as alcohol, and actually acts much the same way in the body. Lots of research on that. Other stressors that are coming onto the radar in recent years are cell phone usage and other media use. Also, things that used to be considered huge stressors, like divorce, moving, medical trauma, a death in the family, etc. are currently glossed over in the world of medical stress. They are still very problematic for people. And many doctors say we have really underestimated the stress that the whole covid debacle has caused over the last couple of years. It would be a good idea, I think, to evaluate your lifestyle and see if there are any issues you can get after to lower general stress levels.
One should try to lower the carbohydrates intake while being affected by the condition. The working mechanism here is ketosis, if you consume too much carbohydrates the ketosis gets inhibited. Why ketosis is important? Because it allows to shortcut broken metabolic pathways by switching to ketones as a main substrate for ATP production. Such switch, even temporal, allows broken tissues to heal.
But if one has a higher level of insulin resistance (IR), he won’t be able to drop the sugar easily. In this case, the solution is to switch to keto in conjunction with acetyl-L-carnitine which allows to improve lipid consumption. The improved lipid consumption creates a compensatory effect for the lowered levels of glucose, allowing a person to gradually overcome the insulin resistance. If the individual with IR neglects to use exogenous L-carnitine, he risks to worsen the neurological damages by waning off the sugar too quickly. This situation is manifested by glucose-dependent panic attacks of metabolic nature.
By the way, the shortness of breath may be a byproduct of some degree of insulin resistance. In this case, periodical HOMA-IR blood tests allow an individual to ensure that his treatment goes in the right direction.
As you can see, the relations with sugar may be quite complicated.
I had chronic thiamine deficiency lab documented in 2015 (not told or treated other than “take a multivitamin” then).
Blood B1 test, repeated 2/2020 deficient again.
I so empathize with your continued symptoms. Have you tested your iron and ferritin levels?
I just found out my iron is very low.
Perhaps it’s due to my high dosing thiamine, which I then attributed it all to “pseudo-hypoxia.”
Taking B1, B2, B3, B12, biotin separately in higher doses and upping electrolytes seemed to ease it some but this unrelenting exhaustion, on & off shortness of breath, muscle weakness achiness continued.
This took me to a naturopathic doc at a BIO MED Center for further testing.
Yesterday, I was given my test results, interestingly very indicative of poor autonomic (ANS- autonomic nervous system) functioning which didn’t surprise me, since researching thiamine deficiency indicates the serious effects it can cause on the ANS.
I also was found very low in iron:
Total iron 42
(lab norm 45-160 mcg/dl)
%saturation 11
(16-45% lab norm)
I suggest testing your iron. Will copy/paste to article also. Wellness wishes ?❤️
So what did thiamine deficiency do to your body? And are you any better now?
My CHRONIC thiamine deficiency mainly damaged my nerves, causing severe nerve damage. Skin biopsies proved severe small fiber neuropathies (SFN). I’m take thiamine in a combo of forms 3-4 times a day which eases most symptoms.
I’m what’s known as “thiamine dependent” now. If I stop taking B1, my symptoms return.
I definitely see a worsening of symptoms if eating sugar or processed foods. I avoid sugar, alcohol, coffee or teas due to the tannins which deplete thiamine.
I notice I’m easily affected by any stressors. Resting, revives me but it’s very frustrating to feel so much better 3-4 days then go down again. I’m seeing a naturopathic doctor now trying to treat my symptoms as holistically as possible.
It’s an ongoing struggle but I’ve improved so much overall. I’m walking without assistance most days now, whereas before I could barely get out of bed. I needed a walker for a time. My iron deficiency went unrecognized and I believe that was the missing link. Be sure to retest your nutrient panel as you progress if symptoms worsen.
Wellness wishes to you!
Couple of things for your radar if they’re not on already. These seem to be a relatively hot topic at the moment for natural solutions post Covid.
Nattokinase, great allrounder for circulation, will break up blood/micro clots caused by Covid infection or jabs if you’ve had them. Bromelain, similar to nattokinase but pair this with NAC, Glycine and Curcumin in the form of Meriva. Lions mane mushroom for myelin repair, I believe it’s still being used in the clinical setting in the far east for MS sufferers. Wishing you all the best in your recovery!!
Thank you, I’ve never had any of the covid jabs by the way, I will order some of these in the future after I’ve trialed other supplements.
My Pleasure. They’ve really helped me after a couple of bouts of Covid. Agreed, be good to research them for potential future use, be that covid related or health in general. Great to her you haven’t had the jab. All the best 🙂
I was in a similar situation in my mid 20s, working on graduate degrees and seemingly struck down by a different virus. I hope you can resolve your situation speedily. Current research, the internet and greater acceptance of alternative therapies are in your favor. I’m still working on my condition but have experience I can share. 1. My genetic report from 23 and Me years ago and more recently from Ancestry showed a great need for nearly all B vitamins, including B1. My father, who was always very healthy, developed neuropathy in both legs up to his knees. Based on my experience with the right kind of B12 injections for my genetics (methylcobalamin in my case), I suspect that he needed similar shots, but never received them because he saw only average allopathic MDs. He was told only to take a multivitamin with Bs, which were completely ineffective. I’ve learned that remediating multiple B Vitamin deficiencies is easiest with professional help from someone familiar with nutrition who does it gradually so the rebound effect is lessened or eliminated. I wish I could name a specialty, but I’ve seen a variety of modalities that have helped others. My professional uses electrodermal testing and uses only word of mouth as advertising. 2. Breathing: unlike you, I have been sickly since birth and am now feeling better than ever. I had pneumonia twice as a child, bronchitis and upper respiratory infections many, many times and have had asthmatic attacks as an adult when exposed to animals with double coats. I’m delighted to see that B1 has helped your anxiety. I took have been told my health challenges were psychosomatic. Years of medications and counseling/psychotherapy were somewhat helpful, but I have gotten great relief from a few doses of classical homeopathy and from a massage therapist with a master’s in mental health who does bodywork. His brand of work has consisted of correcting structural distortions (painful) and then breathwork that allows me to cry and scream out my trauma. It sounds awful to most outsiders but gives me the greatest relief and return of energy. And since starting the breathwork, other professionals and I have noticed a far greater ability to breathe and hold my breath. I don’t know what form bodywork might take for you, but several kinds have helped me a lot. Medication can “buy time” according to one of my MDs, but it’s up to the patient to be proactive and find ways to heal. Most counseling helps with making better rational decisions but doesn’t address underlying trauma. 3. General experience with healing: It’s a rollercoaster, not a “Stairway to Heaven” with a new step up of feeling better every day. Healing slowly lasts; quick results can point one in the right direction but may not last. Finally, congratulations on having the discipline to change to a healthier diet! I made similar changes 40 years ago and have tweaked my diet over time. This discipline has saved me a lot of pain as I am one of the few I know, diagnosed with Chronic Fatigue Syndrome but with no fibromyalgia. My healing has been multimodal. I’ve had to do it myself but with lots of help from functional medicine professionals, massage therapists, body workers, a chiropractor and a health coach who knows nutrition. Best wishes as you reach out to find your healing path.
Thank you, the neuropathy I have in my feet seems to have stopped, I remember they used to burn at night (not bad at all just ichy) then the next morning then would be numb, it spread to my big toe on my left foot, my right foot definitely wasnt affected as badly as the left, the numbness has never got worse since resolving my b1 deficiency but worryingly has never got better after months of trying, it’s always worse when it’s cold aswell, sometimes it takes me all morning to warm them up, I’m just desperate to find out what will help get the nerves/blood flow back.
Your neuropathy will slowly wain away thanks to the fact that you caught it relatively early. You are also using adequate medications and approaches while having a good sense of therapeutic direction. Given months and months of therapy, frequent walks around the city, stress-free lifestyle, good diet and sleep, chances are you will be able to shake the illness off completely one day.
Don’t be shy to try some B1-megadosing from time to time, but do it slowly and carefully. Every such cycle should bring more improvements until you feel that you no longer need it, at all.
First the Covid ? then Covid did a number on me and through the other side oth it- There’s a few papers written now on the Vascular effects of the Virus causing abnormal clotting and micro circulation clots + auto immune issues. Many doctors are turning Triple Anti Coagulant therapy to resolve it. I personally fly to Cyprus for HELP Apheresis therapy which removed LDL LPa, Fibrinogen, Spike Protein, Biofilms, Auto Antibodies from my blood over 5 treatments. Since returning home I haven’t been breathless and my circulation has significantly improved.
How bad was your circulation and breathing? Was you able to exercise? I can exercise now which is amazing because I felt that bad at one point I thought I’d never lift a weight again, but it just seems to have reached a certain level and stopped there without reversing fully, it feels like there’s something blocking my lungs from getting the air in, like I can’t breath as deep as I could before.
My advice (for what it’s worth) is to stick to a Whole Foods diet and get as close to carnivore as you can. I often times see the same paradoxical reactions in my clients (along with myself) when starting out and I believe that like thiamine, the body is adjusting back to its optimal state which can be rough sometimes.
If you want to actually test whether you’re heading towards diabetes, test your fasting insulin or HOMA-IR. Most docs won’t order it themselves and insurance won’t cover it if they don’t provide a good reason but it’s pretty inexpensive and is a much better indicator since by the time your fasting blood glucose is high enough or your HbA1c becomes elevated, you’re already full blown and in big trouble. You want fasting insulin below 5 and if this became standard then we could save millions of lives not to mention decrease suffering and funding of drug companies. Of course, we also need to get the American Diabetes Association to stop telling patients to eat carbs when their disease clearly shows that carbs have become toxic to their biology but it’s hard when their funding comes from big food and big Pharma but we’re working on it.
I’m sure I don’t have to tell you that alcohol is extremely toxic and I can tell you that it was a big part of me hitting rock bottom on my health journey. It’s also a comfort blanket for most people so it’s important to address underlying issues that may be contributing there. I’m ever so curious as to whether you took the jab but it’s really here nor there at this point I suppose. I am very impressed by your resolve and glad you’re getting on the right track so young in life. It takes time to heal and at this point, we have generations of damage being done where sick parents are having sick children but the body can and will heal if you give it what it needs which is LOTS of nutrients (mainly coming from red meat), exercise, sleep, and good relationships. Good luck and thanks for sharing your story.
Thank you for commenting, I’ve had a few blood tests done in the last year or so and my AC1 is 5 so not too bad, but I do get strong sugar cravings sometimes, I’m no where near as bad as I used to be with sugar, I’d have some every 2 or 3 hours in the past but now I just have abit of chocolate in the evenings but it still gives me bad symptoms the next day, I just have a massive sweet tooth. I’m gonna try a new diet for the coming weeks just eating meat veg and potatoes because they seem to be a card that doesn’t have much effect of me.
Cool and again, A1c is a poor indicator because by the time it’s elevated (which can sometimes take decades), your body has already been trying to keep up by pumping out the insulin until it can’t anymore in which your A1c goes up and your needing drugs. Only other thing I’ll add is that you might want to read Toxic Superfoods by Sally Norton. You have some symptoms that point in the direction of Oxalates from what I’m gathering. Good luck HR!
Hello, I would try acetyl carnitine, in that acetyl format. It helped me generate energy from fats. And also the ketogenic diet made me feel bad and generated anxiety and acetyl carnitine takes it away in minutes in addition to helping neurologically.
I would try sunflower lecithin to support your cell linings, as I needed tons of it to remylinate my nerves and did poorly with only vitamins and minerals. Also make sure that you have adequate electrolytes (including magnesium and calcium which aren’t often in electrolyte drinks) because breathing and circulation problems are hallmarks of electrolyte imbalance and any ketogenic diet makes people feel bad in the beginning few days due to losing lots of electrolytes with the initial big drop in water weight. If that doesn’t work look into the more unusual symptoms of histamine intolerance, which really messed with me for SEVERAL years because I did not get classic histamine reactions like sinus stuff or itchy eyes. Hope one of these ideas helps you get back to normal!
Whats your condition if you don’t mind me asking? That lead you to have demylination? And yes I forgot to mention that electrolytes do seem to help too, and also how much sunflower lecithin should I take to do this?
Thank you, it was a challenging time for me, especially when everyone including your family think you’re mad, but yes I am definitely on the road to recovery, when i look back to this time last year i thought that with it for me, didn’t think id get my health back to this level, just need to fix the last bits if possible, the circulation in my body is terrible these days, exercising is the only thing that helps so good job i love it. Just hoping someone on here can give me the answers ?
Thank you so much for sharing your journey and the challenges you’ve overcome. It’s truly inspiring to see how you took charge of your health, did thorough research, and found solutions that worked for you. Your persistence and dedication to finding answers, even when faced with skepticism from doctors, are commendable. It’s evident that your positive changes, such as incorporating Benfotiamine and TTFD into your routine, have made a significant impact on your well-being. Your story serves as a reminder of the importance of advocating for our health and exploring alternative paths when faced with adversity. Wishing you continued success on your journey to complete recovery. Your resilience is truly inspiring! ?
Thank you, it was a challenging time for me, especially when everyone including your family think you’re mad, but yes I am definitely on the road to recovery, when i look back to this time last year i thought that with it for me, didn’t think id get my health back to this level, just need to fix the last bits if possible, the circulation in my body is terrible these days, exercising is the only thing that helps so good job i love it. Just hoping someone on here can give me the answers ?
Neurological recovery is always a roller coaster. Regarding the blood flow and going beyond the vitamins, you will feel improvements from physical therapy, body massage sessions performed by professionals. On the supplements front, you may try to experiment with small amounts of NSAIDs every second or third day – in my situation, slight immunosuppression was one of the instrumental keys to faster recovery. Antioxidants may also significantly affect the neurological condition – for example, resveratrol 200 mg taken before sleep may improve and even fix limb numbness for some individuals. Other potent substances are NAC and alhpa-lipoic acid, but they require careful use.
Unfortunately, there no silver bullet that would work in one day. Healing is a slow and tedious process, but the prognosis is positive if pathology was caught early enough, usually meaning a full recovery.