Maybe not the right forum for this, but this is my “helping people” blog, so I thought I might use it to try to help myself and I REALLY need some help.
I have been dealing with a great deal of pain the past two years which seems to be related to reacting to B-12 supplements and possibly even B-12 in food. I have a serious B-12 deficiency, so I have to take something. If I don’t, lots of bad things will happen, including dying.
Basically if I ingest enough B-12 in any way (pills, shots, food, drops, etc.) and any kind of B-12 (cyanocobalamin, methylcobalamin, and hydroxocobalamin) I react with a great deal of sinus/facial pain.
I have tried anti-inflammation diets/paleo/gluten -free diet, vegetarian diet, many antiinflammatory herbs.spices. I have purposely lost almost 40 pounds, so I am at a good weight. And I have kept exercising as much as I can. Nothing seems to help.
Problem is also that NSAIDS don’t touch this pain, and I don’t take to narcotics very well. Most of them make me pretty sick. Plus, though I have to take them, I really hate taking them.
I have seen 25+ doctors and a few have really tried to solve this within their expertise, but most just don’t seem to care if they can’t understand it within their realm of experience, so its on to the next. What I really need is to find: 1) a doctor who might have dealt with such a thing before, and 2) a doctor who is willing to make the effort to actually research this — I can’t seem to find anything on the web specific to my case. Or 3) someone who has had a similar concern
Current diagnosis is that I am having an autoimmune response to B-12. It is NOT an allergic response: I have been to four allergists, one very reputable and we even tried a desensitization protocol (didn’t work). Plus allergy meds don’t touch this.
I have tried to maintain my positivity throughout this, but the constant pain is very discouraging and wearing.
So-o-o if anyone has any really good ideas or contacts: someone who knows someone who knows someone who has experience with this, please let me know. Or if you know how to dig deeper into the web than I do for info and can find any info/doctor/patient with a similar concern I would be most grateful.
Just FYI: from testing I probably DON’T have Wegener’s granulomatosis, as I have had a blood test, but just to rule it out completely I will have a biopsy later next month.
Sorry to step away from my usual. Within a week or so I will try to post something more upbeat. If you are interested in reading more “Dialogues with Mephistopheles” I am trying to get that new blog up and running, Unfortunately, what I am dealing with really saps my strength. Maybe I’ll get-er-done this week.
Thanks all for caring and let me know if you find something.
Best, Joe Koob