Does this happen to anyone else? Usually when I'm at work and get tired but often when I'm just at home. I'll feel decent then start feeling like I've come down with the flu and feverish, sweaty and chills. You can see it in my eyes. Dark circles appear and surround my eyes and they get all blood shot and I get pale.
I was just diagnosed. Naturopath said my body creates anti pariatel cells or however you spell it. I've been sick about 10 years and didn't know why. Drs and specialists told me it was just fibromyalgia after many tests. I've been getting sicker and sicker as the years passed. I have head to toe pain even if someone touches me it feels like they've hit a bruise.
I can handle the pain but the feeling of feeling like I'm dying is very worrysome. I just started my first injection of b12 dr said twice a week and I'm on a very strong iron supplement since my ferritin is at a 7.
I hope I'm not alone. Idk how long I've had this but I know I started getting sick with pain and migraines about 8 years ago
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Ladyawkward
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So often B12 deficiency and Pernicious Anaemia are mis-diagnosed. You maybe have one of those conditions, which you need to be tested for.If you have been tested positive for Anti-parietal cells, it would appear that you have P.A. Have you been tested for Intrinsic Factor (I.F.) antibodies? You have been unwell for such a long time, your recovery will not be swift. Have you been told that you must have adequate amounts of folate(B9) to work together with B12? Leafy green vegetables or a supplement. All the best to you
Well I have been tested for everything under the sun by a rheumatologist and he said everything was normal. It wasn't until I saw this naturopath. He ran tests I've never heard of and the test results showed a positive anti pariatel cell antibody and the levels are very very high. He told me I can't get b12 in any other way than shots. My stomach is also very messed up. He put me on vsl#3 probiotics too. I often have to run to the bathroom aftet eating been this way for a long time. He also told me I barely have any acid in my stomach so it often feels I have heart burn (regular drs would prescribe me anti acids making my problem worse) I'm so nauseous in the mornings and at night. He said I can't digest my food well at all. But the feeling of being very ill is so hard to live with. I am taking folate with my iron. It's not called an iron supplement but it has 36mg of iron in one pill, thousand times your b12, folate, vitamin c and something else in it. He said take 2 a day. I have always made sure to get a lot of b12 through my diet and supplements before this too and I was taking an iron supplement in my multivitamin and it seems it was a waste of time. Not sure if I can even absorb iron through my diet either.
I haven't felt anything from my first self injection but I did feel a bit better after having an infusion of magnesium and b12. I woke up a couple days feeling rested (I feel exhausted every time I wake up and am exhausted all day)
How right your naturopath was to prescribe probiotics. I used one called SYMPROVE which was absolutely marvellous. It is very expensive It is water-based and has to be kept -refridgerated ' I used it foe 6 months and it made a huge difference. Some people use Betaine Hydrochloric acid + pepsin capsules to raise the level of acid in their stomach. Without stomach acid the nutrients in food do not get utilised/absorbed . Raw organic sauerkraut is also a marvellous probiotic (health food shop or make your own) A prebiotic like Inulin is also helpful These various substances can really help your stomach health and re-establish the precious flora/good bacteria . After 6 months my tummy problems are gone. But I do still take a probiotic capsule daily called BIO-KULT. You can look up on line how to treat yourself with the hydrochloric acid capsules. Any one with P.A. Is likely to have little or no stomach acid( Hypo or Achlorhydria) according to a gastroenterologist I consulted. But of course he didn't prescribe a probiotic or hydrochloric acid. I was told that there is no treatment! Some people use organic cider vinegar with mother . I think that you are on the right to recovery although it won't be quick. Best wishes to you.
He seems to be the only dr out of probably 40 I've met that knows what he's doing. He said he knew what to test me for because a teen girl came in sick years ago and he eventually found out she had the antibody too and prescribed self injections and he told me one day she came running to his office (all in work out clothes with a big healthy thankful smile on her face) and hugged him and said he saved her life when she was once a miserable "shell of a person" as he described her
If you have PA (and it sure sounds like it) then you almost certianly have autoimmune metaplastic gastric atrophy (AMGA). Your immune system is killing off the Gastric Parietal Cells (GPCs).
These cells have two main jobs:
1. Making a protein called Intrinsic Factor (IF) which is responsible for carrying the B12 molecule across the gut wall into the bloodstream.
2. Making hydrochloric acid.
1 is responsible for your B12 deficiency and is treatable with B12 jabs.
2 isn't so serious, but still has some bad effects and is never, ever treated by medics.
Not having any stomach acid (achlorhydria) causes several problems. The first is that any protein-rich food isn't broken down properly. Instead of being digested properly it passes into the large intestine partially undigested. The bugs that live there have a huge big party, giving you IBS-like symptoms (nothing for a long time then a sudden need for the toilet, in my case at around 4 am).
The acid in the stomach is also great at killing off bacteria - the stuff in your food that you don't want to pass through, plus the bugs in your small intestine that are really supposed to stay in your small intestine.
Another problem is absorption of iron. This is much more soluble in acidic conditions. Achlorhydria can screw up its absorption. Even without achlorhydria it's a good idea to take your iron with a combination of citric acid and ascorbic acid (Vit C). These both help with iron absorption by grabbing iron atoms and taking them into solution.
Many people have found ways to treat achlorhydria by consuming acid with meals. Some take capsules containing betaine.HCl which releases hydrochloric acid in a wet environment. Others swear by apple cider vinegar. My personal fave is 40 ml of lime juice in a glass of water (although I'll use the betaine. HCl when eating out).
Another thing many people find helps a lot is to take a probiotic (Symprove is very good, but expensive; Bio-Kult is cheaper and works well). Raw, unpasteurised sauerkraut is a good, natural probiotic if you like that sort of thing (luckily, I have Eastern European ancestry, so it must be in the genes).
Phew! I think that's it. Hope it helps.
Tee-hee. I see wedgewood just beat me too it. I'm glad we agreed.
It just really gets to me because I do have a panic disorder that has always come on ou of no where when I'm feeling relaxed, I'll get really nauseous and I have this fear of vomiting so I get anxious and stressed when I feel nauseous. But sometimes I'll panic when I feel so ill and think "what if I die from what I have..." it often feels like my body is going to give up sometimes especially when I look in the mirror and my makeup can't even cover the sickly dark circles that appear and the sickness look in my eyes. I thought people with this issue dnt really notice it :/ oh well.
Thank you for that advice. I was taking apple cider vinegar mixed in grape juice in the mornings but it made me feel somewhat worse. Maybe I'll try again with lime juice
Just wondering about all your symptoms, especially migraine, anxiety, fibromyalgia, restless legs, etc. and whether you've had an RBC magnesium test, as these are all signs of deficiency. If you're B12 deficient, you're possibly also deficient in magnesium?
I'm reading Dr Caroline Dean's book, 'Invisible Minerals, Part 1 - Magnesium and would highly recommend - quite an eye opener. It seems that most of us are deficient in magnesium owing to diminished amounts in the soil.
I've just started taking magnesium citrate for migraine, anxiety, high BP, etc. - it turns out the meds I was on after my BP suddenly went sky high deplete magnesium and is probably why I began suffering anxiety and panic attacks at the thought of leaving the house! Getting back to normal now that I've vastly reduced the offending medication and supplemented magnesium.
Ah - I'd Just drafted this reply to your post when I read further that you felt better after a magnesium injection 😊
PS. You're well placed to buy her own brand of magnesium - ReMag, which is better absorbed than any other. Natural Calm magnesium powder is available for us in the UK.
Well I take magnesium malate once a day and magesium glycinate at night. Didn't notice a difference at all. Maybe I also can't absorb those since he said my stomach is very messed up no being able to digest food well either.
He gave me magnesium infusions and I barely have pain anymore than I used to but I've noticed side effects of the infusions I don't think are good for the day and next day super bad flushing and feeling sweaty all day and chest tightness and extra hard time breathing.
It's only after the magnesium treatment I think. I might have come down with a cold the same time. My boyfriend almost took me to the hospital because I complained I couldn't breathe well at all. Felt like something heavy was on me worse at night. It's gone now
I'm sorry to hear that - breathing difficulties must be scary...
Carolyn Dean writes about absorption issues, which she herself had, and is why she developed her 'Re-Mag' formulation, which is highly absorbable without the laxative effect. The other thing she mentions is that symptoms sometimes get worse just before they improve - very much the same as after taking B12 initially !
Good advice from Wedgewood and FBirder above. Personally, I find sauerkraut works really well - better than any other probiotic I tried over the years for a range of digestive issues). It is, hopefully, healing all the little brushes/microvilli in my gut, enabling better absorption of all nutrients.
Thank you! My head to toe severe chronic pain is less one first time in like 7 years. Might be the b12, iron or magnesium infusions. But the ill feeling is worse !
This is a link to a US B12 website. It was set up by Sally Pacholok, the author of "Could It be b12". A film of Sally's life titled "Sally Pacholok" was released in 2015. Not easy to get hold of in UK though.
This happens to me too (flu-like symptoms out of nowhere), and then I get a migraine. Better with B12 but still happens. Possibly M.E. (but then M.E. is probably B12 deficiency!)
M.E. is also known as Myalgic Encephalopathy and sometimes as Chronic Fatigue Syndrome (CFS) also Post-Viral Fatigue Syndrome (PVFS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
How are those diagnosed generally? I had a rheumatologist tell me it was fibro, chronic fatigue and psoriatic arthritis. Although I don't feel flare ups in joints except my left thumb was double the size years back, I went vegan and it returned to normal size not hurting anymore
I think ME/CFS is supposed to be a diagnosis of exclusion eg when they've tested for everything else that might cause the symptoms, people are diagnosed with ME/CFS.
The problem as I see it is that some conditions eg B12 deficiency are not always tested for in people with suspected ME/CFS. There are quite a few on this forum who've had a diagnosis of ME/CFs at some point.
I'm just scared my naturopath won't know what else to do a month in to treatment and if I don't feel better from the high iron dose and self b12 shots twice a week... he did tell me my dhea hormone level is very low. About 50 when ranges of 150 are normal .. he said he might look in to that if I don't end up feeling better. Didn't want to do too much at once with me
Yes i do understand. I still feel pretty miserable and i don't know if I'll ever be 100% normal again. I'm doing everything right with cofactors and b12 and diet but yeah some days are alot worse. My worst thing is extremely fatigue and not breathing well. I hope this passes for you. Are you making sure to intake alot of foods rich in potassium ? ( low potassium can cause you to have signs mimicking a heart attack I've had it happen). Ive been sick for about 9 years. :/
Girl same! I think it started with low iron at 15. My eyebrows fell out. After my period my health went to shit. My dhea is super low. One thing at a time though. He didn't want to do too much at a time.
What's rich in potassium plant based wise besides bananas? They make me super itchy and swollen face (latex allergy)
Coconut water is a good one. Prune juice. V8 tomoto juice. Strawberry banana smoothies have alot. Salmon, sweet potatoes to name a few. I find the coconut water helps me get alot of potassium fastest. I have alot of grey hair and my eyebrows and thin but havent fell on i don't think :/
Coconut water and sweet potatoes will do! I'm vegan and now I hate that i am because people blame my diet for my AUTOIMMUNE DISEASE lol its irritating. I eat healthy but very bland because my stomach hates me. Thank you for the diet advice. My eyebrows are super thin mainly falling out amd growing back in the outer half (my thyroid is fine) I think it's the anemia
That's what I was thinking. Because in reality if a dr told me it was because of that I'd then tell them "dairy is awful for your bones especially if you have arthritis. I have psoriatic arthritis. So dairy is bad either way. Eggs would make me so sick I'd throw up no matter how they were cooked. And meat in general is hard to digest. Someone with horrible problems digesting food wouldn't thrive eating much meat haha
I also wanted to add I saw another regular dr. Showed him all my testing results. He said nothing amd told me vitamin d. I am so concerned about people being treated by medical doctors after seeing this naturopath amd he found all this bad stuff. I told the dr and asked questions about the antibody and autoimmune disease I have and he literally said nothing and wanted me to see a gastrointestinal person lol. Soooo bad. Never seeing a regular dr again unless I have strep or pneumonia again. They seriously know next to nothing except general common things
Yes I relate to those feelings too. Even while on the b12 shots, for a long time my energy would just tank suddenly. It sounds like you have just begun treatment?
Yes I just got diagnosed a month ago. I have been sick about 10 years it started when my eyebrows fell out. And I think fibromyalgia was a misdiagnosis and the constant head to toe pain could have been the disease. But now I'm to the point I feel like Im dying when I randomly just don't feel good. It goes away once I get to bed but very inconvenient when I'm at work or out and about at 3pm or something. I'm doing twice weekly self b12. I had an infusion iv with magnesium twice so far and this last time he added b12 into it and I'm on my second b12 shot I did myself. So I just started. Also on a super high iron dose. He's not even sure I can absorb iron either but is going to test my levels the end of the month.
It just really sucks. Sounds like I'll be up and down feeling bad and good my whole life huh
I also am not concerned about my looks really but I just want a nice complexion and to look pretty and I'll do my makeup all nice in the morning and put a lot of concealer over my dark circles and by the end of the day even sooner I just look so sickly I hate it no make up can cover it
Hang in there- it might take several months to feel improvement. I turned all sorts of funny colors with low b12. Watch out for sugary foods, they can make things worse.
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been this way for a long time. He also told me I barely have any acid in my stomach so it often feels I have heart burn (regular drs would prescribe me anti acids making my problem worse) I'm so nauseous in the mornings and at night. He said I can't digest my food well at all. But the feeling of being very ill is so hard to live with. I am taking folate with my iron. It's not called an iron supplement but it has 36mg of iron in one pill, thousand times your b12, folate, vitamin c and something else in it. He said take 2 a day. I have always made sure to get a lot of b12 through my diet and supplements before this too and I was taking an iron supplement in my multivitamin and it seems it was a waste of time. Not sure if I can even absorb iron through my diet either. 
Feeling very unwell
Fainted yesterday, very out of things but don't know why...what more care can one take? 
Loading dose jab make me feel very sleepy the next day.
Bad couple of days and feeling very low.
