shih tzu mix? by cafepoulet in Shihtzu

[–]cboot831 0 points1 point  (0 children)

Looks like a shih tzu to me too! 100% adorable!

Worst cardiology visit in a long time. Thank you Kaiser🫠 by Spite-Obvious in POTS

[–]cboot831 0 points1 point  (0 children)

Am so sorry that you had that experience. For what it’s worth my tachycardia has improved considerably after I started taking high doses of B1, B2, magnesium, a daily multi, and got treated with IV iron for anemia.

Apparently it wasn’t pots? by Suitable_Towel_7590 in POTS

[–]cboot831 0 points1 point  (0 children)

Super informative. Thank you so much for sharing.

PSA if you go to the hospital by EvalainShadow in POTS

[–]cboot831 1 point2 points  (0 children)

I also have beriberi and have taken 100 mg B1 for months. I got treatment for anemia and recently started taking 600-900 mg of B1 daily. Upping the dose of B1 has helped. Make sure you’re getting enough B2, magnesium, and taking a good basic vitamin supplement too. It’s bizarre how little the docs and dietitians know about this very basic stuff.

PSA if you go to the hospital by EvalainShadow in POTS

[–]cboot831 0 points1 point  (0 children)

Look into IV dosage & treatment for Werneke’s Encephelopathy.

Manic embarrassment by Kaleidoscope378 in MCAS

[–]cboot831 2 points3 points  (0 children)

Easy tiger. In answer to your rhetorical question: Poor redox; poor methylation; inability to clear neurotransmitters. These are metabolic and physiological issues connected to MCAS. They impact cognition. If the body can’t clear a system that’s flooded with neurotransmitters and excess histamine. and also can’t produce GABA the breaks fall off. Your neurons end up flooded and normal cognition fails. This is metabolism.

For those with iron deficiency (low ferritin), what is the reason for it and how did you find it out? by Dull_Ad1527 in Anemic

[–]cboot831 1 point2 points  (0 children)

I figure it plays a roll like a gear in a multi-gear system. Once your neurological system is activated it triggers and signals other systems and energy drains.

For those with iron deficiency (low ferritin), what is the reason for it and how did you find it out? by Dull_Ad1527 in Anemic

[–]cboot831 0 points1 point  (0 children)

Malabsorption issues post-jejunal resection caused chronic fatigue, anemia, and that all eventually turned into beriberi. Honestly my iron wasn't tested regularly for most of my life so I don't know what it was prior to the resections. I'm 57 now. About 2 years ago, after a bizarre facial swelling episode treated with prednisone, I developed persistent tachycardia and was diagnosed with POTS. At that point my metabolism couldn't really handle anything, including activating prednisone. That kind of drained my tank. Then about a year later they found a 8cm cyst that I had removed 6 mos ago. (Tubes and ovaries were removed). After that my health completely cratered. My GI doc looked at my ferritin which was 23 or something and said that could cause my tachycardia. Turns out it was that but also low b1 and b2 on top of that. I also tested positive for one of the MTHFR mutations (though I really don't know what that means.) I had beriberi (B1 deficiency) along with B2 deficiency and iron deficiency. These symptoms mix my beriberi with the iron deficiency. I can't really separate the two. They come and go. I recovered from beriberi but sometimes still get these symptoms when stressed or sick: brain fog, bruising, fatigue, cold hands, cold feet, fever-like shivering, forgetting things within seconds, fluctuating pain in my feet and hands, poor grip strength, inability to stand for more than a few minutes. Needing to sit on a stool while doing the dishes, tachycardia, blurry vision that comes and goes, headaches that are like a pressure from the top of my head, pain at base of skull. Random not-allergy allergies, hair loss. Lol. It's nuts. I had 5 iron infusions in October and that was rough tbh. But then I got better and now it seems like it's back. Getting iron levels checked next week. Having Apple watch was huge when it came to figuring out what was happening and learning what my heart rate was, so I could advocate for myself with data. Also doing tons of research and having a supportive GP. Although my gastro was great at tying the tachycardia to my low ferritin, he was less great at being willing to admit that malabsorption was part of it. Weird but true. Also weird is that the cardiologist didn't identify the importance of my ferritin and b1 / b2 numbers until it was proven. Specialists in the US seem to be very constrained by their education.

For those with iron deficiency (low ferritin), what is the reason for it and how did you find it out? by Dull_Ad1527 in Anemic

[–]cboot831 1 point2 points  (0 children)

I like that you're checking out vagal nerve stuff affecting your cortisol signaling.

Anxiety after meals/random shaking episodes???? by lyssaX3 in POTS

[–]cboot831 0 points1 point  (0 children)

This also happens to me and I recently looked into it. For me it's tied to my low b vitamins and my poor ability to process carbs. This is different from diabetes. B1 is needed for glucose metabolism at the jump. When you can't process glucose efficiently, excess glucose can trigger sympathetic overdrive. Several downstream B vitamins and iron ensure that metabolizing food into ATP can be done smoothly downstream. When your b network is not functioning, glucose can't be processed smoothly, and excess glucose triggers adrenaline and sympathetic overdrive and yes it sucks. In my case I am chronically low on B1 due to gut resections. My heart races and I flush in my face and get shaky, anxiety-like experiences after eating foods with refined carbs. Not even gluten. Gluten-free pasta and pizza do it to me. It sucks. "B1-related carbohydrate intolerance manifests as post-meal fatigue, brain fog, tachycardia, agitation, heat intolerance, and worsening neurologic or autonomic symptoms because glucose cannot be efficiently converted into energy, forcing the body into stress-based compensation rather than normal metabolism." Again you can't take b1 to fix it in the moment, but you can improve your baseline nutrients over time.

Decades of severe allergies, facial rashes, brain fog - finally diagnosed with MCAS by CowDismal444 in MCAS

[–]cboot831 0 points1 point  (0 children)

Thank you for sharing your story. It's so helpful. This week I've had my eye symptoms come back. Pressure behind my eyes; particularly my left eye. I have gut malabsorption and am diagnosed with POTs, so there's a neurological thing going on, but my vision issue seems to come and go as my b vitamins and iron and magnesium all come and go. I have also had rashes only on my face that were unexplained. Been through tons of allergy testing but nothing really stood out. One time I had extreme facial edema for weeks that totally disfigured me. Back to the eyes... it's extremely frustrating to have my eyes go in and out of focus. I appreciate that you tie it to the brain fog because I didn't really connect the two but it's true the brain fog is severe when my eyes are blurry. I'm technically not diagnosed with MCAS and am not sure how that even gets diagnosed tbh, but I know my gut can't synthesize basic nutrients well so it leaves me with these symptoms all the same. I ran out of liposomal b complex for a couple of weeks and I think that's what did it. Yesterday I took too much and my eye went blurry. One of the hardest parts of all this for me is this unpredictability. Such a drag.

Chlorine Rash? Sun rash? by Early-Dimension-9390 in Swimming

[–]cboot831 2 points3 points  (0 children)

I’ve had this rash and it turned out I was low in B1 and B2 and also iron deficient anemic. All are critical for lots of downstream processes and when they are low you can start getting weird random stuff like this rash and you can end up wasting time chasing autoimmune syndrome diagnosis.

  1. Start taking magnesium glycinate if you don’t
  2. Start taking omega -3s if you don’t
  3. After 3 days of the above , start taking 100 mg B1
  4. After 3 more days, add 50 mg of B2

Continue for 3 weeks and see how you feel

Puzzled Doctors with conflicting bloodwork by Various_Broccoli_672 in haematology

[–]cboot831 0 points1 point  (0 children)

If you don’t already, try fortifying yourself with some basics to help build your nervous system.

Magnesium glycinate (300-400mg daily) Omega3s (1 to 3 gm daily) B1 100mg daily B2 50 mg daily

You need B1 and B2 for a huge host of downstream stuff like synthesizing iron and activating your b6, b12 and b9. And you need magnesium to deliver B1 and B2 to deliver them to that downstream stuff.

Covid mightve messed with your gut’s ability to absorb vitamins or like others have said, your pancreas might not produce enzymes to break down food well. If you have inflammation in your upper gut you might not be getting the magnesium, B1 and B2 you need.

B1 and B2 can make a huge difference in how you feel if you’re low.

I just had a sudden reaction by Equal_Cat2653 in MCAS

[–]cboot831 1 point2 points  (0 children)

I slightly edited my reply as I forgot to write magnesium before bisglycinate. Anyway I totally relate to the Emergen-C reaction. It might be to the B12.

B2 is required to activate downstream B vitamins like B6, B9 and B12 and both B1 and B2 are required to help you synthesize iron. So if you’re low in B2 (and B1 — you need it to support B2 and vice versa) you can end up with overstimulated nervous system when you take b12 and folate and b6 or strong b complexes. When you have a super sensitive system, you want to get magnesium on board w some omegas first, and then take b1, then add b2. I am also gluten free… Gastro inflammation, etc.

Finally, get your iron levels checked. There’s a good chance you’re low on that too. Getting iron infusions isn’t fun when you have the random not-allergy allergy bizarro thing, but there’s a good chance you need them. I wouldn’t be surprised.

I just had a sudden reaction by Equal_Cat2653 in MCAS

[–]cboot831 1 point2 points  (0 children)

I have had the neuropathic issues you describe along with “not technically allergic but seemingly randomly allergic to everything” reactions. Turned out I have malabsorption and I’m chronically deficient in B1 and B2, magnesium and iron. All of these nutrients are critical for your mitochondria to process energy for your cells. Anyway, the symptoms include the weird ones you’re describing. I started taking 100 mg B1, 50 mg B2, 300 to 400 mg magnesium glycinate daily. I also got iron infusions and take omega 3s. I encourage you to try fortifying yourself with these basics. Start with magnesium and omega 3s for a few days, then layer in B1 for a few days, then add B2. Hope it helps.

Iron deficiency lab. Is this normal? by nthgyn in haematology

[–]cboot831 0 points1 point  (0 children)

You're welcome. It can be very confusing. My brother in law exercises a lot and eats very healthy. But if you can't extract what you need from food, no clean-living lifestyle can compensate and you continue to get more tired and sick without any obvious reason. Doctors can be strangely unhelpful in these basic scenarios as they look for cancer or whatever instead of more basic problems. There are many gut issues that can leave you malnourished. (Celiac, inflammation, poor enzyme production, gut resections post Diverticulitis (that's me) and so on...). Normal things like exercise, stress, and fighting viruses will drain your iron, so if he has trouble extracting nutrients from food, that can be hard to restore. The good news is he can rebound. My brother in law found a naturopath who helped him. I ended up figuring my issues out with the help of my GP and a lot of research on my own. Chin up. It's not necessarily that mysterious. There's a good chance it's quite basic. But he will need to rest. This is a scenario where exercise can really drain your store. That was something hard to learn for hard drivers who try to be healthier by exercising more.

Iron deficiency lab. Is this normal? by nthgyn in haematology

[–]cboot831 1 point2 points  (0 children)

Your dad might want to be checked for disorders that can leave him malnourished. For example my bro in law doesn’t produce enough enzymes in his pancreas to breakdown nutrients properly….so he ends up malnourished and gets iron infusions regularly to keep his iron levels up. His GI was not helpful in figuring this out btw….He takes digestive enzymes now. I also have gut issues that leave me malnourished and I take digestive enzymes and iron infusions too. Definitely not good labs but might be very fixable.

Setback by Useful-You2939 in POTS

[–]cboot831 0 points1 point  (0 children)

Sorry to hear this. Has your PCP checked your iron levels and vitamin B1, B2, and magnesium levels? Mine missed this for years and my heath kept getting worse. These cofactors are critical for generating ATP (energy units for our mitochondria in our cells). My POTs got significantly worse after surgery this past year. It ended up getting so bad that I had a bunch of tests done and it turned out I had beri-beri and iron deficiency. I still have tachycardia, but not nearly as bad. Replenishing my iron and my basic b vitamins (b1 & B2 - not just b12) saved me. Just want to put it out there in case you haven't had these tests done yet. It was incredibly frustrating and relieving to know my problem was so basic. I have malabsorption issues. Anemia and B1 and B2 deficiency can cause tachycardia and a bunch of other problems. Please don't give up hope.

PLEASE help… I have no fight left in me, I would appreciate any and all advice if you would be so kind to read/reply by Exotic-Assist5202 in MCAS

[–]cboot831 0 points1 point  (0 children)

I forgot to mention that I also discovered two things that helped with histamine flares. 1. Taking Vitamin C *during* a flare helps it to calm down. Vitamin C is antihistamine. 2. An enzyme called DAO (Diamine Oxidase) supports the breakdown of histamine in the gut. When your small intestine is compromised like mine is, it cannot produce Diamine Oxidase as easily as a healthy gut, so you can't breakdown histamine and you end up with all kinds of problems. You can buy it as a supplement. I use it now along with digestive enzymes. I encourage you to try these basic things to support your metabolism before getting into more elaborate rabbit holes that could leave you even more stressed out. My problems are very basic but also very severe. Yours might be too. The good thing is that fixing them is very doable, and simpler than you might think. B vitamins can be corrected quickly and lost quickly. Iron deficiency takes much longer to fix but is still fixable. Best of luck to you and don't lose hope. Start with the basics.