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Have you had any "interesting" reactions after the shots?

Just started the shots recently. I'm not deficient (B12, MMA, and homocysteine are all ok), but my doc thought it'd be helpful for some of my neuro symptoms. Sort of a "why not try this and see if it does anything?" kinda thing.

Anyway, I've noticed an achy feeling like a bone ache through my body, upset stomach, and fatigue after doing the shots. This will last for a day or so.

Wondering if others got this or if I was the only one. Thanks!
Hey Nyxie!! How are you? Don't be a stranger.
I don't do IM B-12 so I can't help you there. Many people did report feeling worse after the B-12 shots. It may also be the additives in the shot itself.
FLFLOWERGIRL:)
Hi Dearie! :)

Sorry I haven't been around. Been up to my eyebrows in other stuff. Can't even remember how long it's been since posting here the last time. But anyhoo, my saga so far.... LOL!

Was in treatment for lyme and various coinfections for 7 months, including a picc line and IV antibiotics for more than a month. Fun!....not. Stopped all the meds about 3 months ago, largely because we ran out of money for the doctor (out of network).

Oddly, I feel pretty good, all things considered. The bone-crushing fatigue is gone, although I'm still kinda tired most of the time. Most of my physical symptoms have gone (the meds were making me sooooo sick!) and I'm left with a bunch of funky neuro stuff. Parasthesias, one-sided weakness, tremors, seizures, etc. More fun!

At this point, I'm not even sure I was dealing with lyme&co. My physical symptoms didn't improve while on the meds and the neuro stuff only got worse. Have appts with both an epileptologist and a top-shelf neurologist this month to see if they can figure out what's going on.

Herbie (thyroid nodule) is stable (as per the last u/s in Oct) so he's kinda taken a back seat to all the rest of the stuff for the time being. Will take care of him later on this year. Currently scoping out surgeons to deal with this for once and for all.

One interesting note: even though I'm definitely perimenopausal now (had a grand total of 3 menses last year), my ferritin's still going down. Was in the 40s a year ago and it's now down to 26. Still no idea what's going on with that. Back on iron supps again. Bleah!

re: B12 - wondering if it could also be the form of B12. Currently taking cyanocobalamin. Wondering if methylcobalamin would make any difference? I'm really dreading the after-effects of the shot more than the shot itself.

So how you doing? How's your son? Hope everything's going well. :)
Nyxie--Thanks for the well wishes! It has been a long time, I often wonder what your up too. I really do hope that you can get to the cause of all this. Lymes disease, it's so hard to say if you really do have it from what I have read. How can you be sure of what you are treating? Maybe it was a good thing that you ran out of money. Maybe a break from all that will help. I know you have had many things tested as well. Perhaps some of your fatigue is from your low ferritin. Maybe what ever is causing your symptoms is also related to the low ferritin? Gosh it's so hard to find answers, isn't it? Your symptoms sound like they are getting pretty serious with seizures and all that is happening. I hope your new docs are really good for you. Sounds like you have done your homework in that department.

It is interesting that you have no periods and your ferritin keeps going down. I think it's all related in some way to the thyroid. Do you have Hashi's too? I don't remember. I take iron every day still and only have a 58 ferritin after 2 years. I know if I stop taking supplements that it will drop again and I never want to go through that again!!! My GI doc told me that I am married to iron and I guess he is right. It seems that for many of us that come back here or remain, we have to stay on iron or were back to square one. I thought that once I had an ablation it would take care of the problem, but it didn't take care of everything I suppose. My GI doc also said, I am having malabsorption of iron due to PPI's. You don't take those do you? I don't know what to believe. My symptoms are getting better but they still persist.

I think you are suffering enough, I would try the SL B-12 Methyl and see how that works for you. It's a lot easier anyway.

Thanks for asking, all is well at home. It has been a much better year for all of us. My son is still scanning with no changes, we are very fortunate.

Do keep us posted on your results with your new doctors. I will keep my fingers crossed for you. FLFLOWERGIRL:)
It's never easy, is it? LOL

No hashi's, but was tested close to 2 years ago. Would love to get my antibodies done again, especially since I've had some on-and-off funky thyroid swelling and pain. It's not often, but enough to worry me a little.

I'm taking a PPI. Omeprazole to be exact. I usually take a vit C tablet with my iron to boost absorbtion. Wonder if it's not working.

Next visit to the doc, I'm going to talk to her about running another MMA, homocysteine as well as an intrinsic factor this time. Wondering if it might be a hidden b12 deficiency (they do exist). I've done the sublinguals (5000mcg), but they don't seem to do much for the parasthesias. The shots at least take the edge off for a couple of days. I have an old script for methylcobalamin shots. Might wander over to the compounding pharmacy and see if they'll still fill it. It's at least worth a try.

Saw the epileptologist on Thursday. While he seems to think a large portion of my issues are caused by depression, stress, and anxiety, he's also doing whatever needs to be done to find the right diagnosis. He's not writing me off as nebbishy, much to his credit. He wants to rule it out as a causitive factor tho. 10mg of Lexapro daily. Feh. I'm scheduled for neuropsych testing in Feb and MRIs of my brain and cervical vertibrae late next week. This'll be interesting.

I'm thankful for getting the MRIs done. Part of my concern is that I might have had a mini stroke since the right-sided stuff happened suddenly. Just woke up one morning and there it was. At least the MRI will resolve that concern one way or the other.

Glad everything's going well at home. :)
[QUOTE=Nyxie63;3854487]It's never easy, is it? LOL

No hashi's, but was tested close to 2 years ago. Would love to get my antibodies done again, especially since I've had some on-and-off funky thyroid swelling and pain. It's not often, but enough to worry me a little.

I'm taking a PPI. Omeprazole to be exact. I usually take a vit C tablet with my iron to boost absorbtion. Wonder if it's not working.

Next visit to the doc, I'm going to talk to her about running another MMA, homocysteine as well as an intrinsic factor this time. Wondering if it might be a hidden b12 deficiency (they do exist). I've done the sublinguals (5000mcg), but they don't seem to do much for the parasthesias. The shots at least take the edge off for a couple of days. I have an old script for methylcobalamin shots. Might wander over to the compounding pharmacy and see if they'll still fill it. It's at least worth a try.

Saw the epileptologist on Thursday. While he seems to think a large portion of my issues are caused by depression, stress, and anxiety, he's also doing whatever needs to be done to find the right diagnosis. He's not writing me off as nebbishy, much to his credit. He wants to rule it out as a causitive factor tho. 10mg of Lexapro daily. Feh. I'm scheduled for neuropsych testing in Feb and MRIs of my brain and cervical vertibrae late next week. This'll be interesting.

I'm thankful for getting the MRIs done. Part of my concern is that I might have had a mini stroke since the right-sided stuff happened suddenly. Just woke up one morning and there it was. At least the MRI will resolve that concern one way or the other.

[/QUOTE]


Nyxie--I think that having the IF test is a good idea. It's easy and will tell you if this is the cause of your problems. I have a friend that has B-12 and iron deficiency and they cannot find a cause, she even has IF when tested. That's really weird. She has had most all of the testing. I wonder if we will ever have these answers? Are you taking high dose iron? Best of luck with your B-12 shots. I too would try another form.

Boy your Epileptologist visit sounds like my visit to the Neuro last year. I don't know if you remember, I had facial numbness on left side along with my hand and foot. Muscle aches and pains all over which started in my neck. Jaw and tooth pain. They thought that I might have MS, Lupus or a pancreatic tumor:confused:. This all came about with the diagnosis of anemia. I also had nerve conduction testing MRI of cervical spine and brain, all tests proved negative, THANK GOODNESS! I took that 500 question neuropsych too and proved them wrong about depression, I told them I wasn't. It did show health anxiety, we already knew that from seeing so many "White Coats" LOL. I was also prescribed 10mgs of Lexapro, but I couldn't get myself to take it. It was too help the aches and pains. He did get me off the Xanax that helped with all the anxiety when seeing docs. Anyway, your story sounds so familiar. My symptoms wax and wayne now with no cause. I am thinking that it is thyroid (because I am usually Hypo) related, the Endo says, no:dizzy:. I think the low ferritin is also related. Best of luck with your testing. Keep us posted. FLFLOWERGIRL:)
Wow! I'd forgotten about your testing last year. Yup. Sounds a whole lot like what I'm going through. Honestly, I'm hoping they find something so they can fix it. Tired of this nonense.

re: iron dosage: currently taking 200mg of ferrous fumarate every 3 days. Might up it to every other day. It's the only form I've found so far that doesn't cause digestive nastiness. Doing this on my own right now but will talk to the PCP about managing my iron and other stuff when I see her next week. I have a list for her. LOL!

Next week's going to be busy. Have an appt with another neuro for a second opinion and getting the MRIs done on Thursday. Friday have a full physical with the PCP. Will let you know what's going on after those are over.

Thanks for all the well wishes! :)
[QUOTE=Nyxie63;3847762]Have you had any "interesting" reactions after the shots?

Just started the shots recently. I'm not deficient (B12, MMA, and homocysteine are all ok), but my doc thought it'd be helpful for some of my neuro symptoms. Sort of a "why not try this and see if it does anything?" kinda thing.

Anyway, I've noticed an achy feeling like a bone ache through my body, upset stomach, and fatigue after doing the shots. This will last for a day or so.

Wondering if others got this or if I was the only one. Thanks![/QUOTE]

Hi
I would strongly recommend the methyl shots at 10,000mcg in 2ml versus the other forms it is the active form of B12.......If you are trying to heal any nuero damgae they need to be given consistently I was on 3 a week you can also take subs in between it is important to take folate with them and a good multi B vitamin also AD form of B12 is important for energy inthe mitrochodria......
You can experience a worsening (although I dont like to refer to it as that more of a shift in symptoms I experienced this after my 3rd injection I felt so much better then it came flooding back more intensly I like to refer to is as a healing processs as I nearly gave up on it I was encouraged to plod on very very glad I did as I am 100% better it took time the neuro symptoms do not go away overnight...B12 also detoxifies the system of nitric oxide which may explain why you dont feel that crash hot for a little while afterwards worth the persistance and I would recommend the methylcobalamin shot against any other form....
My son is now having them as he has just been diagnosed with a deficiency it must be in our family a problem with converting I would say....

Good luck to you
Hey Nyxie, I am Sammy, I am from the U.K and I have C.F.S. My friend is going to see Dr horowitz in a couple of weeks. I was reading some of your posts and I was just wondering how you are doing with the treatment? He also has C.F.S and has tried so many treatments to get well but to no avail. So he's flying over to New York to see this guy. I was just wondering if you have made progress with him? I hope you don't mind me asking, I am just really interested.

Thanks very much

Sammy xx
Hi Nyxie,

Just wanted to say that each time I go for B12 shots, I have horrible body pain as well & just feel overall crappy!
Good Luck
Hi to fellow low B12'ers, with high folate...

I just got a vial of 30 ml of methylcobalamin at 25,000 mcg per ml.(cc)
To give myself shots.

I have had low b12 I believe for many years now. I was declared officially low last year when a cardiologist caught it below the minimum level of 200.

I desperately want to see if I can reverse the Head to Toe numbness and nystagmus and fasiculations and Tinnitus and memory loss and depression and other neuro and mental issues.

I started giving myself the 25,000 mcg shots daily for about a week. I think it was helping. I gave myself a break and about 3 days later my mouth was all metallic, now 3 more days and I have worse double vision, and an increased area of numbness on my left hip to my mid thigh that seems worse... and a big increase in the depression.

Does this make sense or is my dose too high.? I can adjust it to whatever and whatever frequency. I really want my brain back.... if possible.
I have heard of doses this high in autism and another md prescribed doses as high as 70,000 mcg per day for Chronic Fatigue. Info on any side effects seem lacking.

Of course, I could have something else de-myelinating my nerves as well, however all so far is normal.

It is hard to comprehend that this was missed for so long. Most of my numbness is not total, but reduced from the normal by about 50 - 75 % loss.(except for the new spot). That is an estimate on my part. Can a neurologist quantify this with a machine? Ken.





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