In his book, Martin Hooper describes "enormous benefits" of B12 infusion, specifically with methylcobalamin, followed by injections of methylcobalamin. Do any members of the forum who live in the US get infusions? I live in NW Wisconsin, about two hours from the Twin Cities, Minnesota. I would love to find a doctor in this area with expertise treating recurring periods of feeling woozy and generally like crap, and persistent balance problems.
A bit of background: I was diagnosed by a neurologist in May. Neither the neurologist nor my GP know anything about B12 treatment, though my GP is getting advice from someone. Fortunately he is not fighting me on injections. Initially, starting at the end of May, I was going to be on a plan where I would do one injection (cyanocobalamin) a day for a week, one injection a week for a month, then every other week for a couple of months, then monthly. Things went ok until I got to the every other week injections, at the beginning of July, when my symptoms returned. I proposed returning to weekly injections, which my GP agreed to, and I began again at the beginning of August, but symptoms did not improve, and I proposed returning to daily injections. My GP didn't like it, but again went along with it, and I resumed daily injections halfway through August.
But my symptoms, though better than when I started treatment, are improving slowly at best. I am under the impression that the more time goes by, the poorer the prognosis for improvement regardless of treatment. So I am anxious to make hay while the sun shines.
I have read some of the discussion about oral B12. In addition to injections, in the middle of November I purchased quick-dissolve methylcobalamin, 5,000 mcg, which I take on an empty stomach twice a day.
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WiscGuy
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Don’t give up hope. I have had some setbacks when injections were either stopped or reduced in frequency. Unfortunately, when one cuts back too soon, there can be a price to pay. It can take some time to get back where you were before and then even longer to start to see additional improvement. One month of weeklies isn’t very long. I have taken weeklies for the last year and had a huge breakthrough and I believed I had realized all the improvements that I was ever going to see but not the case. I had been injecting every other week over the past four years and it was a rollercoaster for me—lots of ups and downs, but I didn’t realize I needed to go back on weeklies long term. I never had loading doses, so that was a factor in my recovery, no doubt.
As long as you are seeing some improvement, however slowly, that’s still a good sign. I have seen improvement that has occurred over a period of years, so don’t be discouraged over a few months. It’s good that you increased frequency of injections. I’m in the US and haven’t heard of anyone receiving infusions, but sounds enticing!
Another thing you may try that might help you? I began on cyanocobalamin but I have self injected hydroxocobalamin IM for the past five years. This form of b12 is available by rx at Walgreens. I used to get it at CVS but ran into trouble sourcing it there after a while. The only problem is that there are times when it becomes unavailable due to shortage, which is super frustrating!
I never noticed any benefit of taking high doses of sublingual methycobalamin either on or off injections. Absolutely no benefit for me but it has helped some folks on this forum. I’d say definitely worth a try. Recovery can be slow. Hang in there-you’re on the right track! You are beyond fortunate to have a doctor so open to frequent injections. Count yourself very lucky!
how did you get prescription for that? I'm in Canada and trying to find hydroxocobalamin but I don't see any pharmacy even Rx one sourcing it out. what is your frequency of injection. Now I inject cyanocobalamin every 7 days but it doesn't work for me. I need hydroxo or methycobalamin for injection
Actavis hydroxocobalamin is available in a 30ml multi dose vial by Rx in the US for IM injection. It is packaged for clinic use, not individual use.
I used to fill my Rx at CVS but availability was very spotty and technicians weren’t knowledgeable about how to place the order, so I switched to Walgreens and have had better luck with consistency. However, every year or so, there’s a shortage and I’m unable to obtain it for a few to several months sometimes.
There are some mail order pharmacies that fill this Rx, too—such as Blue Cross Blue Shield Federal Employee Plan—which may actually be CVS as well. It’s also available for order from online medical suppliers in the US but an Rx is required.
I’ve also had hydroxo injections at a private clinic that did not require an Rx—which saved me when my doctor’s office refused an injection while waiting on b12 blood levels to come back from the lab.
From the info I’ve gathered on this forum, hydroxo is not available in Canada. I self-inject in my thigh muscles once per week, but my injections were cut back to once every other week pretty early on because b12 levels were over 2,000. This caused a delay in my recovery but I didn’t understand it at the time. I am working on trying to go every 10 days between injections but I’m not there yet.
My initial treatment was with cyanocobalamin, but I switched to Hydroxo because I had read about it in “Could it be B12?” and that’s what the private lab was injecting. I received weekly hydroxo injections, got better and went back to my doctor. I told her about how much I had improved and I’m sure she could see it—she saw me in person at my absolute lowest crash—I know that I must have seemed completely “mad.” I also brought the “Could it be B12” book with me to my appointment. Since I was doing well on the hydroxo, she wrote me a script when I asked for it.
The next time I can’t get hydroxo, I will have to go on cyano because when I try to stretch out vial use beyond 28 days, symptoms begin to reappear. I’m a little worried about whether cyano will work for me now. I only took it for a very short time—two monthly injections and then weekly injections for maybe a month before I switched to hydroxo.
Good luck. I hope you are able to get what you need.
I think methylcobalamine should also work for you. If your insurance cover then you can get proscription from natural path doctor fir methylcobalamine and get it for free from compounding pharmacy. But methylcobalamine is unstable should be refrigerated I think. I have never tried but I'm trying to extend my insurance and visitva natural path doctor and then get methylcobalamine from compounding pharmacy and inject 4 times a week. But still I'm working in my disability since I can't work and need financial support. But may I buy hydroxocobalamin from Germany but I'm not sure they deliver it to Canada. Methylcobalamine is just IM and fir allergy issues I think it should be injected fir first time under supervision of medical professional. Based on BNF guidelines injection should be every second day. But I think if you can't tolerate it like me it would better to take mega doses B12 timed release along with injection.
Unless specifically prescribed to be taken on an empty stomach I am not sure that is the right thing to do. Take it with something acidic like orange juice at least. Some find high dose oralworks for them but it doesn't work for everyone.
It is possible that you might be able to get an infusion treatment at a health spa.
Thanks for your response. Martyn Hooper speaks of infusions such as "Myers cocktail", which is a mixture of B vitamins and other vitamins, customized with a high dose of B12, "and it will be a high dose." I called several such centers in the Cities, medical and otherwise, and in each case the person I spoke with said they cannot customize their mixture to have a higher level of B12.
That is, did Martyn Hooper mean that the standard Myers cocktail is already high dose vitamin B12? Or that it needs to be modified so as to be high dose vitamin B12?
I read several times and couldn't decide which interpretation was appropriate.
That's likely to be because they are using pre-mixed syringes / ampoules so trying to alter things would mean breaking the chain of sterility and a risk of infection as a result.Have you asked if anywhere does just a B12 infusion? you may be able to get other vitamins using high dose oral.
Also, because the full dose of B12 will be get into your blood if you have an injection /infusion not getting the full dose may not be an issue - except that it might mean you need infusions more frequently.
For what it's worth - Cyanocobalamin did not work out for me. I felt great at first but about 3 months in I started going downhill. I increased shots, ended up s.i. everyday and wasn't getting better with all symptoms returning. I switched to methyl-cobalamin which made me dizzy. I'm now s.i. hydroxo-cobalamin and have experienced a vast improvements. I started with daily injections and now every 3 days - on the days I don't s.i., I take liquid adenosal/hydroxy b12. Not sure if that does anything but mentally it makes me feel better. Wishing you good health!
try just timed released one and I take 15000 timed released methylcobalamin. I inject every seven days (cyanocobalamin) but it doesn't work for me like those pills. I'm trying to find a way to inject methylcobalamin or hydroxocobalamin since these two just work probably. My symptoms get worsen after injection so gradually increasing frequency. You have to take good b complex and also methyl folate. on and off take iron pills too. omega 3 and vitamin d3 k2 seems to me should be taken. and through time body starts to get back to normal. It depends to what extent you have nerve damage.
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