Has anyone become sensitive to hydroxo?

[expatkerry]

I've been stepping up my self injections following a relapse and I've injected on 14 of the last 17 days; whilst my legs feel better, my headache and backache have gone and I'm no longer breathless, I suffer from awful nausea after injecting now. This didn't happen when I was injecting 2 to 3 times a week. I'm afraid I've made myself sensitive to this form of B12 and worried about the implications because I need it. I recently read in a study that B12 supplementation changes the microbiome, as I suffer from extreme dysbiosis could this be an explanation? I feel just as I did when I tried to take probiotics.

[pvanderaa]

Why do you say relapse? Did you stop or reduce injections?

The nausea can arise from repair of nerve damage. Possibly the nerves in the ear or the vagus nerve to the stomach. Any excess hunger symptoms? Tinnitus?

Your reaction is due to you possibly becoming deficient again. Once you got sufficient B12 again, nerve repair started which caused stronger signals to the brain. It takes a few days for the brain to recalibrate. Gentle range of motion exercises or swimming can help stimulate nerve repair as well as get the brain to sort out the stronger signals.

Find a stable routine of injections like every other day or twice a week and stick to it. Get back on folic acid supplements and a daily multivitamin if you’ve stopped those as well. Add methyl sublinguals if needed to fill in between injections.

Are you keeping a logbook and assessing a daily severity score for each symptom? The symptoms after injections are very similar to the ones from the deficiency before the injection- it is very confusing to sort out as it is counterintuitive- increased pain is one of these but it is an illusion from the repair of nerve damage.

Telling yourself and convincing your brain that these symptoms are good and only an illusion is hard but you may find they go away faster is you stop worrying about them.

The logbook helps you find your pattern of symptoms that follow each jab in sequence over 3 or 4 days. Once you recognize the pattern you can anticipate the symptom occurring and you get some control back which helps you stop worrying.

Are you dairy and gluten free? For me the B12D and gut issues were like the chicken and the egg, which came first?

I get a soft poo on the day of the injection, this to me is a good symptom that metabolism is working. As I've stabilized into a constant regime of injections and supplements, this symptom has lessened in severity.

I still get an occasional headache after injections. It just reminds me to supplement with methyl sublinguals between injections.

[expatkerry in reply to pvanderaa]

Yes I tried spacing out the injections that's why I relapsed. I am keeping a log which is a good idea. What you say about the vagus nerve is interesting as I had massive problems with this when gastric problems were dire, not that they aren't now, I can only eat 5 vegetables and fish due to malabsorption. So yes, gluten and dairy free! Taking any kind of oral medication is out for me. I think I'll move to two injections a week and do it just before bed then I can sleep through the nausea as it lasts about 6 hours. The soft poo you mentioned also struck a chord as I had this early on in the treatment and now it's gone so perhaps the nausea will too.

[Hidden in reply to expatkerry]

Have you had a fecal elastase test? This is a good standard test for malabsorption. Interesting about your back and shoulder pain; I’m struggling with that so might do daily SI. Good luck

[expatkerry in reply to Hidden]

Hello, I had a comprehensive stool test which flagged up gelatinase, hemolysine, and urease, all indicative of bacteria that has become virulent (some strain of staph' or strep', or both) antibiotics are no longer an option due to extremely low levels of 'good' bacteria. Probiotics are also out as these make me very ill. A recent study published on pubmed demonstrated that excess B12 can shift the microbiome, I hope it will for me. As our American friend pointed out : what came first B12 def or dysbiosis? In either case I suspect one impacts on the other.

[expatkerry in reply to expatkerry]

PS. It was my breath test result that showed I had either malabsorption or Sibo, the results were so high they were hard to interpret.

[Hidden in reply to expatkerry]

That’s interesting. I had a horrendous pathogenic bacteria profile on my first second and third analyses. My most recent one is the most improved with just one pathogenic and two lesser ones. So I’m now on a gut repair programme taking butyric acid pills and inulin and probiotics do hopefully it will help. I’m also going to try everyday injections like you did to see if it works. I’m glad it did for you as it seems it’s not a common complaint.

All the best.

[expatkerry in reply to Hidden]

I wouldn't say it has worked just yet but I have seen improvements in intestinal comfort which corresponds with the study findings that cobolabim supplementation increases butyric acid production which is essential to heal the gut. Good luck 😊

[pvanderaa in reply to expatkerry]

I supplement methyl B12 at bedtime as I find I dream better and feel more rested in the morning. Strange how it wakes me up during the day and helps me sleep at night.

I originally started injecting at night to help reduce the headache and aggression I was feeling after my jab but have since returned to morning injections. I split my weekly cyano B12 in half as it comes in rubber stopped vials instead of break top ampoules. I take half Monday and half Thursday mornings. I feel more stable without that massive high that gave my the headache and then didn’t last till the next injection. My bum feels like a pincushion but I’m not complaining.

[expatkerry in reply to pvanderaa]

Yes I've also wondered about taking just half a dose but it comes in a vial here and I'd have to throw it away 😕

[pvanderaa in reply to expatkerry]

Do you mean you would have to throw away the second half of an ampoule where you break off the glass top? I’ve not done it myself but I’ve heard of filling the syringe from the ampoule (1 ml) but only injecting half with the first needle. Then change the needle to a clean one and store the second half in the closed syringe in the dark. (My syringes are clear plastic). When ready, inject the second half.

I almost tried this when I got 1 ml ampoules of methyl in Saudi Arabia but as the strength was 500 mcg/ml, I decided in the end to inject the entire 1ml to get at same effective B12 dosage as I was getting with cyano (1000 mcg/ml in 0.5 ml injections).

[expatkerry in reply to pvanderaa]

Yes I'm too nervous about storing the unused b12