Zoe
Did you get the B shots because of a tested deficiency or more for overall health? If it helped with the fevers I'd definitely like to ask my doctor about it. Is it something you have to go to a clinic for or that you can do at home? I'm glad you can relate on how bad the fevers make you feel. It may sound minor but it really affects wellbeing. I hope yours subside again very quickly.
Hi Ocean, I know my B12 was in the 600s about 5 yrs ago or whenever it was first tested. When I finally got a workup for lupus, cancer and more, my B12 was tested again, and it was around 240. I believe 200 was the bottom of normal. On the Quest lab sheet, it states that low-normal levels have a number of fairly serious symptoms associated. This doctor, who did not and does not believe in CFS, decided I was D deficient and low B12 and ordered 1000mcg every other week for 1 month and then 1 per month after. My local doctor did the injections and decided to do 4 weeks in a row of the 1000mcg. After seeing that there was a slight response (and not a bad response at least), decided to keep going weekly for longer. When we scaled back to try monthly, there was a noticeable drop. BTW, this was the standard cobalamin B12. I stayed on mostly weekly subcu, then IM, shots for quite a while. She then began giving me 1500 mcg at times to see if it could keep me from needing injections as often.
Over a year later I found that it was officially diagnosed as pernicious anemia. Around that time I had started working with a CFS doctor who immediately said he usually prescribes 5000 mcg to 15000 mcg between once and 3x/week. I said I preferred to use 2000 (that's as high as my local doctor would go) since it seemed to help enough.
FF about 2.5 years and I am now taking 5000 mcg of a preservative-free hydroxy form of B12. My local doctor would not use the hydroxy form, claiming it might be unsafe, but the local urgent care (not very urgent there at all, not a busy environment) which I went to for some of the B12 shots when I could not get in with my doctor (which was a regular problem) said they would do it if the specialist MD wrote the order. I have had the order changed to up to twice a week of the 5000 mcg hydroxy and the injectible B-complex (it was decided to add this after a while since it seemed a better-rounded approach). Unfortunately, even though the doctor and pharmacy say to just use one needle to inject both together, they could not offer proof of the safety (no studies obviously), so I have to get 2 shots each week (yuck).
Sorry, I always get chatty, especially when I'm severely under the weather, but the important parts to share are probably:
1. Subcu shots really did not really help me (these are the kind you can do at home), I don't know why, but there was a large difference and I've stuck with IM.
2. IM shots are not fun, but after experimenting: first in arms, then in thighs while lying down, the newer place does them in the flank or upper buttocks. This has been the least painful, but nothing like the lasting pain I would get with arms/legs.
3. The cost for my prescription is $75 every two months for the specially-compounded B12 and B-complex (4 vials, 2 of each that expire 28 days after opening, I've never finished one). This is the least expensive I've found, and the cost is the same for a small vial or a larger, which stinks.
4. The hyrdroxy B12 was a definite improvement over the regular cyano, I don't know if I can explain the difference, but I think the normal, super-cheap cyano aggravated me and I'm not sure my body could deal with the additives.
5.
The results probably took about 1 year at least to really feel that something had changed, more so than a temporary help that dissipated.
6. I never had euphoria or a great deal of energy after shots, though I noticed that - if I was out for 4 hrs total that day going to the doctors, getting groceries, getting my shots, driving in between, I was less likely to get sick with a virus or be flat out the next day or days following an outing if I had gotten B shots.
7. Insurance/Medicare has so far covered the cost of the injections themselves, I could never be an at-home self-shot-giver, and I don't think you can do your own IM shots.
8. Last B12 and folate tests came back at over the readable maximum: >1500.
9. After several B12 tests after weeks/months of the original cyano weekly injections, my level never got higher than 568. This helped nudge me to the CFS specialist's point of view that the hydroxy form is far more bioavailable.
HTH and you didn't fall asleep trying to finish. Still feverish, weak and tachycardic after 6-8 wks. So I'm a little loopier than usual...
