Annie:
No offense, ever
This is why we are all here - to learn. My B12 levels are really high. My doctor did tell me about not producing acid. She also said this is why sublingual is probably not the best choice. Since my levels are sky high, do you think this is still the issue? I hope you don't mind my asking, but you certianly seem to have done your research. I did not know about the Betaine and certainly will try it. Also cyanide - OMG! Well, about the three autoimmune disease, thank you. Hold on to your hat, I recently had bw because of stomach problems and not being able to tolerate immunosuppresants and now they are telling me maybe crohns! Can you believe it? My stomach is fine when I'm not on immunosuppresants - even with all the mestinon. Thanks for taking the time!
Quote:
Originally Posted by AnnieB3
Dorothy, No offense to anyone but B12 shots are archaic. The shots are cyanocobalamin. Cyanocobalamin has to be converted by the liver into methylcobalamin before your body can use it! Methyl-B12 goes to work right away in the body.
Since you have pernicious anemia (PA), you need to take B12 forever.  I know that the shots are "paid for" by insurance but taking that B12 on a daily basis will not only help you to heal better but feel better. I take my B12 twice a day (5 mg. at a time). I use the sublingual methyl from Jarrow at iherb.com. The shots were not making my peripheral neuropathy any better and my levels were not climbing up very high.
Besides, the shots are made using cyanide in the "purification" process! 
So you've got three autoimmune diseases. I think any one person should be limited to two. That is so not fair. And not that you would want FOUR, but I think Teresa's suggestion of at least being tested for celiac is a great one.
The other thing about pernicious anemia that doctors don't often tell patients is that because of the destruction of the stomach's parietal cells, you don't have the ability to make stomach acid. Did anyone tell you that or what to do about it? I don't have stomach acid but supposedly don't have PA (no antibodies). I take Betaine HCL (Solaray brand) with everything I eat to help digest the food. It's a mild acid, usually made from sugar beets. Keeping the GI tract happy and healthy is very important in keeping the immune system in the best shape possible. A lack of stomach acid is implicated in a lot going wrong, including increased infections, inflammation and GI tract cancer.
I'm glad you like the idea of using Flovent. It might even be good for someone with lupus, since the risk of pleuritis, etc. is greater. My body couldn't tolerate the "regular" steroids but I can handle Flovent (I do have asthma). And there are different strengths of Flovent, so if you have, for example, a lung infection, your doctor could increase it temporarily until it gets better. I hope you have a good pulmonologist, just in case you need one!
Sorry to go on and on but it is so frustrating to have these diseases and then to not have enough help for them. I know doctors are good but sometimes they don't go quite far enough for patients. Not that they have time. I'm glad you have a good doctor.
Annie |