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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks for posting this. I have been struggling to get correct treatment for b12 deficiency since July. I am fairly certain mine was masked for some time because of high folate.
In the beginning, I went to the ER on two separate occasions for dizziness and hearing loss and they told me to take Dramamine and drink more Gatoraid and that everyone who comes in here complains about fatigue. My symptoms progressed and finally on the 3rd visit, they ordered blood work and my red cell size was off the charts as well as other indicators. I got a letter in the mail a week later from my HMO telling me to immediately start taking b12 and folic acid. By this time neurological damage had been done.
Unfortunately, nerve damage has occurred and by the time an actual b12 serum test was done, my b12 levels " were in range" Still have the macrocytosis, and finally after a three month wait, had an appointment with a neurologist. Waiting on more follow up.
I decided to research and had 23andme testing. No surprise that I'm ++ on several important b12 methylation SNP's. It's still new to me and from this point on, I will proactively look out for me and tell the so called allopathic experts what they need to know about b12. The neurologist had no clue about the snp's and wouldn't even look at them. After I get the MRI results, I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's. Don't get mad, get even!
I liked the video thank you for posting it. And Xara, thanks for all those links.
Does anyone have any information about dementia recovery with B12? Any success stories?
I'm 25 years old and I've had symptoms of dementia for 7 years, and all the other B12 symptoms through the years (some mild, some bad). I already gave up thinking I'll ever recover, but it's really difficult to think I'll be like this forever.
I feel much better since I changed my diet, but I still have dementia symptoms, the thing I most desperately wanted to fix. If I could choose, I'd rather go back to diapers, if only I could be smart again!
I don't have insurance or a doctor, so I can't get B12 tested. I asked my husband if we could buy the 5mg sublinguals, but I don't think we'll be able to afford it. Money is very tight. He's been taking care of me all these years.
He thinks it's just another "stupid thing June came up with", but then again he thought my diet was a stupid thing too, and I became so much better I can atleast care for myself now. I'm much stronger and healthier and can shower on my own now, for example, and don't have to worry about diarrhea either. I hope I can be smart again if I take B12.
Haha, I started laughing when I read that. I have that but didn't know how to explain it. I trip on my toes too (either they bump on the floor, or they bump into my leg, or they get caught inside the jeans and I "fly" on the floor like a penguin!)I tripped on my toes
Wow, I can't believe that! So much waterI lost a lot of muscle mass, gained 85 pounds of water. They reversed at the same time.
Yeah, my skin already improved a lot, I rarely need lotion or to wrap myself in silk anymore.Omega3 oils can, with the vutamins, help improve skin a lot. Are you taking vitamin C?
I figured that light sensitivity comes from the dilated pupils; pupils open or close on demand based on the amount of light. If you're outside on a sunny day at noontime, your pupils are supposed to constrict into a tiny dot. If you're indoors on a rainy day with the curtains shut, your pupils are supposed to expand.
I checked it by looking at the bathroom mirror. Before when I had sensitivity to light, my pupils were large in a dark bathroom, and when I pointed a flashlight at the mirror, the pupils wouldn't close at all. They wouldn't move, they were large as before. But now that I don't have (nowhere near as much) light sensitivity, when I do this same experiment, my pupils go really small when exposed to the flashlight, and when I remove the flashlight the pupils get large again (so they are behaving as normal now).
That's why I think light sensitivity and large pupils are related.
Xara you do know that kale, spinach, and greens don't have folate, right? I'm just wondering, in case you think it does (it's a common misconception... it has folic acid, which is not the same as folate. Just as beta carotene in carrots (so-called vitamin A) is not the same thing as vitamin A in meat. )
On topic, I just wish I could eat more. Today I didn't eat anything and now I'm eating dinner. I wasn't even hungry for dinner.
It's carrots and chuck beef cooked in butter. It's about one cup of food. I eat a couple bites and I'm full and can't bear to eat anymore. I feel stuffed. But I make myself finish it, obviously.
If I could eat more, I would be able to consume more B12. I could eat cod liver and egg salad for breakfast, chicken heart kebabs for lunch, and beef roast for dinner, and I'd get a lot of B12, but if I eat just breakfast I'm not hungry for the rest of the day