B12 Injection did absolutely nothing. I have Lupus, Sjogrens, Raynauds, Celiacs, Infectious Diseases, including parasites, fungus, bacterias

I am dangerously anemic 6. Dowm by halg in just 2.monyhs. Hemoglobin 11.0, Hematocrit 33.9 very low. Ferritin Serum 7 dangerously low. Vitamin deficient in everything. Malnourished. I received my first B12 injection and 4 days later no reaction. Nothing changed. Daily I cant move. I fall asleep while.driving, extreme muscle pain and weakness, difficult to breathe, irregular heart beat, cold sweats yet always freezing. Very Pale and underweight, pain so bad as exhausted is an understatement also I cant sleep due to horrible pain in all muscles radiating in bones and severe restless leg syndrome. Exhaustion exaccerbates the pain as each month passing as I get worse more symptoms and worse pain. I take 40 different supplements including B6 complex, sublingual B12 have for over a year and all that is needed. Restricted diet high in protien many food sensitivities also. Gut is a mess. Constipation for 2 weeks no bowel movement even with aid then diareah for days straight to where its pure liquid and many accidents. No change worse with B12 injection. Hormones so out of.whack and pancreas not working, adrenal glands failing and liver damaged. Not.a.drinker. I am so tired and wanting to die. Doctor said as tanked as I am with these findings and so much more that a B12 injection someone like me will notice with in 24 hours. Why havent I felt any thing? Should I have felt some difference or do.I need more. Paying out of pocket as cant get insurance and afford Obamacare. Extremely high premiums and far less coverage, now new doctor, dont know him or he me and substandard and most doctors arent accepting new patients. What do I do? I am so very sick and it has been 9 years and every month something new appeas as wrong. Bone marrow not producing? I cant get a straight answer or help. Cant sleep, speach slurred, brittle hair and nails, weak.and numbness, severe pain, blurred vision now. Cant walk up the stairs legs so heavy and breathless. Hormones out of whack that I have 4 uterine fibroids and 2 breast papillomas due to.being estrogen dominant for over a year and to top.it off progesterone so low I bleed 2 timeas monthly for 8 days and soil myself every 30 minutes after changing. Cant move with out gushing. Sorry to be so descriptive but at a loss and this is only half of it. Internal inflammation so high normal.range up to 2500 mine is the highest they ever saw 19,000. I am dying a slow.death and no one to help.

8 Replies

  • If you have only been given one injection of B12 it's not surprising it has'nt worked. You should have an inj. Every day for the first 5 days then one every 3 months, I'v been on B12 for 10 years I know now without looking at the calender I need my next inj. Hope this helps, good luck and stay strong you are not alene :)

  • Thank you so much for your reply. Doctors dont say a thing. Said I would feel better in 24 hours. Thank you for letting me know. He is going to call me Friday and ask how I feel and I was debating to tell the truth. They want you to say it worked to make them feel they are doing a good job or know what they are doing. I will let him know now for sure and tell him I need them daily for a week to start. They dont know much at all.

  • Oh, you poor soul, there is definitely something systemic about your symptoms, has anyone checked the immune system as a whole? As you say, it definitely sounds as it is out of order and needs calming down. If you weren't feeling this bad I would suggest you come over to the UK for a week and see an immunologist and rheumatologist and do all the possible tests. You mention that you're paying out pocket at the moment anyway, you might want to look into this as an alternative. At least here if you go private they do everything thoroughly. If you contact Lupus UK they can suggest some specialists here that you could then call and get some quotes to give you an idea.

    With everything going on, have you tried an antiinflammatory diet by any chance?

    I'm so sorry you're so poorly.

  • Thank you for your reaponse and the concern and information. I will look into Lupus UK as after 9 years and getting worse now daily not one rhuemy does a thing but says its your lupus and you are fine. No one has looked that deeply and did all the tests you mention. I was diagnosed 40.years ago but never as bad as I am today at 50. Thank you for your help and may you stay well. All those here I can relate to very well and I am sorry but yes we all need to stay strong and its not comforting that others suffer from this disease too but now I know its not all in my head and I am not alone. God Bless you. All of you.

  • PS just began an anti imflammatory diet. Sticking strictly to it as it is all I have left to try. I am alone and no one even knows what lupus is and because I try to not bursen any one or I look ok they dont see whats really going on. I hate showing my weakness any more.as so many have their own problems and dont want you bringing them down. I am very underweight but thats all you can see on the outside and they.think I am just trying to be thin. I could careless about being thin I want to feel healthy.

  • Hi very sick

    So sorry you are severely ill. I think you need to be in Hospital as you have so much going wrong! Have you had your thyroid tested?. Hope the B12 helps soon. Take CareX

  • Hi Very_Sick,

    I'm so sorry to hear how unwell you are and I agree that you should be in hospital for thorough tests and observation. I too have pernicious anaemia and at the start I had daily injections which gives you a boost and then you have them every 3 months. I really feel for you and when your this sick you do start to think your losing your mind... But remember your not, your symptoms are very real and debilitating and you clearly need some medical intervention.

    Please keep me posted and I pray that you get sorted soon. Lots of hugs. X

  • Hi just thought I'd say that I have anaemia probs. (have lupus). My ferritin was 3 and recently, 7. I have accompanied low hb counts, but not always. A lot of your symptoms, pale, tired, breathless, cold, and heart irregularities, can be because of your anaemia. I have to have iron transfusions every so often. The difference this makes is dramatic. I am told cause is my lupus. I too have extra issues, re liver, so I'm not saying I am fine now, but I certainly have improved. When ferritin is low, iron tablets are not enough. Us lupus patients are always told to declare extra vitamin supplements, (shop bought), as they can interfere with some prescribed meds. I am not told I need B12 jabs, so can't comment on that, but I know through experience that your ferritin count will make a big difference if increased. Your haemaglobin is not too low so that isn't the prob. My last transfusion showed my haemaglobin at around that level. Good luck with getting help for everything.

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