I need help trying to figure out what’s wrong with me
-
Hi,
Sorry to hear that.
One clue: Dysautonomia
Dysautonomia is a disorder of the autonomic nervous system (ANS), where the nerves that control involuntary bodily functions—like breathing, heart rate, blood pressure, digestive issues such as nausea, and temperature—don't function properly. This malfunction leads to a wide range of disruptive symptoms and problems with fatigue and exercise intolerance or difficulty in controlling body temperature.
Thiamine (Vitamin B1) impacts dysautonomia by being essential for energy metabolism in nerve and muscle cells, and its deficiency can cause or mimic autonomic nervous system (ANS) dysfunction. Symptoms like fatigue, dizziness, and muscle weakness, seen in thiamine deficiency, also occur in dysautonomia. Correcting a thiamine deficiency with supplementation can lead to significant symptom relief in some dysautonomia patients.
See Elliot Overton (nutritionist) if you want confirmation on dysautonomia (3) and Dr. Antonio Constantini (neurologist).
Note that some people aren’t suffering from what we call a nutrient deficiency but from a metabolic block. Dependent-B1 enzymes are blocked / inactivated due to some “stress factors” (see figure): chemical and environmental toxins, chronic inflammation and / or infection.
Figure 1: Thiamine-dependent enzyme blocked in energy and global metabolism
Note: Not a lack but enzymes blocked.
KGDHC = α-ketoglutarate dehydrogenase complex = dependent-B1 enzymes.
Credit: Elliot Overton (nutritionist) and Dr. Antonio Constantini (Italian neurologist)
Warning: When taking high dose thiamine, there is a protocol to follow. There is interaction with other vitamins. For example taking 100 mg, then afterwards 500 mg of thiamine (the TTFD kind is advised for the brain penetration) will deplete the other cofactors involved in the assimilation of thiamine. See the advised protocol further by Elliot Overton (hallmark N° 14).
Why a high dose vitamin B1 and not only the RDA? We need HD B1 to get a beneficial passive assimilation by the body. Transport carriers are limited.
See comment on my forum before plunging into the video of Overton (rather long):
English corner: Disruption in coordination with fatigue and exercise intolerance, temp & intestinal problems
Metabolic block: Brain & intestinal system affected by thiamine deficiency
https://mirzoune-ciboulette.forumactif.org/t2127-english-corner-disruption-in-coordination-with-fatigue-and-exercise-intolerance-temp-intestinal-problems#30304 -
2018's quite a while ago. Are you tracking your body weight and do you have any vision problems?
Alcolol's definitely liable to cause a volume deficit. (Source, Britain.)
-drinking modest amounts of potassium (1/4 dose of rda )results in tingling all over.
Supplementing salt pills (4-5 grams a day) hasn’t solved any issue though with blood volume or stomach acid production.
What's wrong with fruit, juice with a bit (a bit!) of added sugar and a pinch of salt, and lightly salting your food? This way you could try and... inflate yourself slowly over a few days. Eat 3 spaced meals, ignore your a sluggish sense of hunger or digestion. IME there's a point where the distal stomach starts eating it the other way, when you know the ignition is on.
And you've mentioned being unable to sense thirst but you didn't say anything about water. Are you drinking any? Maybe minimise that.
-
will you sweat if you go into a sauna?
-
Hi, yes I do have dysautonomia. I’ve tried mega dosing allithiamine , thiamine hcl and beforthiamine at various different times over the years. Unfortunately it hadn’t helped really at all. I don’t know maybe i can’t absorb it properly with low hcl?
-
I’m 150 lbs and 6’2. I look sick but just last year I was 220lbs. I lost a lot fast I’ve been up and down throughout my illness.
Juice I seem to have issues with. I don’t know if I’m truly allergic to something in most juices or if it’s some mast cell thing. But I can drink liquid Ivs and things like that. I’ve went on binges of high electrolyte drinking trying to increase volume to no avail.
Alcholol seemed to kick off the whole thing years ago but I’ve steered clear of it since then. Trying to figure this volume depletion is so hard. For years I’d have chronic diarrhea which stopped last year. Bloodwork always remained normal.
I was doing some reading today about high serotonin blocking chloride and salt absorption in the gut. I wonder if this could be preventing the volume from expanding. My levels are chronically very high in the blood but don’t look bad in urine. Like I’m not making the breakdown of it. Its levels you’d see in carcinoid syndrome but I don’t have a tumour nor do I respond to antihistamines or octreotide.
-
I’ve tried the sauna twice
Both times left me sprawled out on the floor gasping for breath with a 170 bpm heart rate. It takes a very long time and sweat is minimal. Like a couple drips.
I quickly realized my body is wanting to hang onto fluid for dear life and trying to sweat is a bad idea.
-
@KM88 said:
I’m 150 lbs and 6’2. I look sick but just last year I was 220lbs. I lost a lot fast I’ve been up and down throughout my illness.Hmm.
My levels are chronically very high in the blood but don’t look bad in urine. Like I’m not making the breakdown of it. Its levels you’d see in carcinoid syndrome but I don’t have a tumour nor do I respond to antihistamines or octreotide.
Where are you getting these diagnostics? You're under observation/on a clinicians radar? Anything other notes on your renal function?
I was doing some reading today about high serotonin blocking chloride and salt absorption in the gut. I wonder if this could be preventing the volume from expanding.
Have you done any experiments with 1/4 a cypro and 1/2 an aspirin? Have you done anything with taurine?
Juice I seem to have issues with. I don’t know if I’m truly allergic to something in most juices or if it’s some mast cell thing. But I can drink liquid Ivs and things like that. I’ve went on binges of high electrolyte drinking trying to increase volume to no avail.
Check your gulps/chugs. Sip.
The whole oesophagus and stomach lining is supposed to do strangely intelligent things. You can find receipts for this.
-
Copper?. Do you eat anything which may trigger hemolytic anemia? Such as methalyne blue etc i forgot other ones.
G6pd defeciency causes blood cells to be vunrable to many diffrent factors so testing yourself for it can be helpful.
The drink you took may have started a cascade of oxidative stress which caused blood cell die off
-
@KM88 said:
I’m 150 lbs and 6’2. I look sick but just last year I was 220lbs. I lost a lot fast I’ve been up and down throughout my illness.Hmm.
My levels are chronically very high in the blood but don’t look bad in urine. Like I’m not making the breakdown of it. Its levels you’d see in carcinoid syndrome but I don’t have a tumour nor do I respond to antihistamines or octreotide.
Where are you getting these diagnostics? You're under observation/on a clinicians radar? Anything other notes on your renal function?
I was doing some reading today about high serotonin blocking chloride and salt absorption in the gut. I wonder if this could be preventing the volume from expanding.
Have you done any experiments with 1/4 a cypro and 1/2 an aspirin? Have you done anything with taurine?
Juice I seem to have issues with. I don’t know if I’m truly allergic to something in most juices or if it’s some mast cell thing. But I can drink liquid Ivs and things like that. I’ve went on binges of high electrolyte drinking trying to increase volume to no avail.
Check your gulps/chugs. Sip.
The whole oesophagus and stomach lining is supposed to do strangely intelligent things. You can find receipts for this.
I’ve tried Cypro and aspirin many times for extended periods. And at some pretty high doses as well. I recall taking up to 60mg Cypro one day as I saw it could help carcinoid syndrome. No help on resolving anything really. And also I’ve done taurine recently.
My respiraolgost ordered the serotonin. I’m suppose to see an endo but hasn’t happened. But it keeps coming back elevated in the blood. I don’t know if ite just a sign of how bad I’m doing or a direct cause of all this. But blocking it hasn’t been a game changer for the month or so I tried it.
-
Copper?. Do you eat anything which may trigger hemolytic anemia? Such as methalyne blue etc i forgot other ones.
G6pd defeciency causes blood cells to be vunrable to many diffrent factors so testing yourself for it can be helpful.
The drink you took may have started a cascade of oxidative stress which caused blood cell die off
I have tried copper supplementation , even the supposed bioavailable kind.
The question is if it did , how would I stop it. I’ve tried every antioxidant under the sun. Maybe it’s an oxidizer I need. Hydrogen peroxide or something.
-
@KM88 no antioxidant can help if you eat fava beans with a g6pd deficiency. Give us a rundown of your diet.
Where do you live which country city -
Agree with lobotomize, we need some information on your diet now and over the past years
-
@KM88 barely able to walk sound like severe defiency,
Salt dont necessary increase digestion and can reduce digestion and increase foods/liquid reflux if you eat to much.
With the few elements you mentionned, and also initially triggered by alcohol, you should try ripe fruits and good quality dattes possibly, its pro movement/ease of movement and joints health. If this doesnt improve, with your current diet likely being muscle meat, you could be low in molydenum, selenium, manganese, so i suggest you experiment with foods high in these minerals or with supps if you are someone that do take supps. And i suggest you dont eat to much muscle meat per day.
-
@KM88 said:
I don’t know if ite just a sign of how bad I’m doing or a direct cause of all this.Chicken and egg thing.
My respiraolgost ordered the serotonin. I’m suppose to see an endo but hasn’t happened. But it keeps coming back elevated in the blood.
How did you arrive at a respiratory? You didn't say anything about recent pulmonary issues, or it's not clear.
Did you take the most regularly recommended covid therapeutic, most commonly referred to as a vaccine?
And what else was going on in 2018? What do you do for a living, is it hard? (Be vague.)
-
Hello! It looks like you're interested in this conversation, but you don't have an account yet.
Getting fed up of having to scroll through the same posts each visit? When you register for an account, you'll always come back to exactly where you were before, and choose to be notified of new replies (either via email, or push notification). You'll also be able to save bookmarks and upvote posts to show your appreciation to other community members.
With your input, this post could be even better 💗
Register Login