Hello, I have PA. I believe that when I first started reading this board, I posted some of my medical history here. Some things have changed since then. 9 years ago, I had terrible pain in my right heel. I did some research and came to the conclusion that I might have a B12 deficiency. My regular internal medicine doc did the B12 blood test and said my B12 was low. He agreed to CYANOCOBALAMIN 1 injection a month and then I asked him to move it to 2x a month, since I wasn't getting any better. I also had extreme fatigue, but always thought it was from hypothyroidism (which was diagnosed probably 12-15 years ago). After looking into PA, I thought that I would be better off having regular Gastroenterology checkups. My main real reason for starting to go to a Gastroenterologist was because of severe bloating/distention in my abdominal area. I am 66 years old and look like I am 7-8 months pregnant! No one at the time (and I had been to around 6 different kinds of doctors; knew why my abdomen was so bloated.) Back to that bloating subject later. So during an upper scope about 4 years ago, they saw gastric ulcers. Finding that out, I had the Nurse Practitioner from my Gastro doctor's office verify my ideas about having PA & she ran the 2 necessary tests around 2 years ago. I guess that both came back positive. She wrote the script for CYANOCOBALAMIN B12 injections because I thought it would be better for her to handle them rather than my internal medicine doctor who I usually only see once a year. From the time to now, that I have been injecting B12, I sill have some pretty good fatigue going on, and at night, the bottom of my feet burn and toes do too. About a month ago, all of my joints have started hurting at night- so much that it wakes me just rolling over to the other side. I might add that I am also about 20 lbs overweight. Not terribly overweight, but overweight just the same. Fast forward to Dec 2018. Since no one up until this time (Dec 2018) ever knew why I was so bloated/distended; my Endocrinologist suggested I see an allergist/immunologist associated with University Hospitals in a larger city about an hour away for food allergies or sensitivities. He tested me on my back for 40-50 substances and didn't find anything. I am not even sure what exactly he tested me for. Since he found nothing, I didn't even ask. He did, however mention having a breath test done, and I had it done at a Cleveland Clinic hospital in Cleveland Ohio. I forget what type of breath test it was, but he ordered a 2 week round of xifaxim for SIBO or small intestine bacterial overgrowth. My bloating did not get any better, so he referred me to a Gastroenterologist at University Hospitals in Cleveland. That Gastroenterologist, after an office visit, said I most probably had leaky gut. He didn't want to see me again, because he said he is primarily a doc who looks for cancer in colons, and this wasn't his specialty. So in early spring of 2019, I decided to see a doctor at the Functional Medicine dept at the Cleveland Clinic. She is an MD. She says on her bio that she treats SIBO. So here I am currently seeing her, she has so far treated me with antimicrobial herbs, and my condition has not changed. So now she is trying xifaxin -I am due to start that next week. Xifaxin is $530 with insurance. I did find a patient assistance program that will give it to me, since my husband and I pretty much live on Social Security. This doctor also suggested that I try 0.1ML (2500 MCG Methylcobalamin injections 1x a week for 2 months to see if I feel better. I filled the RX at a compounding pharmacy in Cleveland last week. Price was $19 for a month supply.
I am writing all of this, for three reasons. 1) maybe someone has some of the same symptoms, and has some success stories for me that may help my treatment. 2). If someone here has some of the symptoms that I describe, and they do not know where to turn- my medical history may help them find the proper treatment, however my condition is till far from improved in the abdominal area- I always remain hopeful. 3.) I was told by my Functional Medicine doc at the Cleveland Clinic that there is a high chance that my sister has many of the same problems that I do. My sister drinks, so she sees doctors infrequently, because you have to level with them and she doesn't want to do that with her drinking. My sister is very tired all the time and I want her to start B12 injections to see if it helps. I fear she also has PA. She had her blood levels checked about 5 years ago and her doc who's not very good said she didn't need it. (we all have heard that!) I also am encouraging her to stop drinking. (she would have to go somewhere for help I think-she is that bad). I am unsure which type of B12 injections might be able to shipped to the US. I hope I can find some for her.
I am not a complainer or a person who dreams up all of these weird things to gain attention. During all of this time, I took are of my two grand daughters since 2011, ever since they were 2 months old and their mom went back to work. I did this 2x a week, for 9 hours a day (she works in a hospital and that was her shift). When they moved 4 years ago, I drove 40 minutes each way for 3 years so that I could be there for them and take the to preschool. They both are in school now. I now take care of my 96 year old mom who lives with us, and also work in my son's lab 1 day a week. So I am not a weirdo making all of this up. I am trying my best to live as close to a normal life as I can. I still am pretty tired (mostly in the evening, still have the horrible bloating, and still am 20 llbs overweight. My main goal is to get rid of the bloating and loose the weight.
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I'm not based in the US. Most of the injectable B12 available that side of the pond is cyanocobalamin and to be honest that should be just as good as any other form. It is also the cheapest because it is the most stable.
Some find methyl helps - some find it does exactly the opposite - so we are all individuals.
The bloating will be very familiar to people - PA can mean very low stomach acidity and that can manifest as bloating. Mine can get very bad at times.
PA can also affect the absorption of other vitamins and minerals - including iron and changes in iron levels in the gut can also affect the bacteria that live in your gut so may be worth getting your iron levels checked.
Like you, I am in the US and have very similar symptoms. I order hydroxocobalamin from either Amazon.de (you can view in English) or from bodfeld-apotheke.de/ (again, you can view in English). Bodfeld's shipping to the US is terribly expensive. Here is the product link that I used to order from Amazon:
Any order from Germany can take anywhere from 2 to 4 weeks due to US Customs. I have always received any order that I have placed for B12 although I had one order that took about a month.
I tried single use ampules of methylcobalamin from Germany. From what I understand they are very unstable and I may be paying way to much for a product that has been degraded to hydroxocobalamin by the time I use it so I figure I will just save the money.
You can also order cyanocobalamin in single use ampules from both Amazon.de and Bodfeld.
Hope this info is helpful to you and all the best!
Hello- thank you for the information. Would you be able to tell me how to view the amazon link you gave me in English? Also, what syringes do you order? I have been doing the cyanocobalamin with the syringes provided by the pharmacy and injecting it intramuscular for years. I am used to that and hardly even feel it. I hope the intramuscular approach is correct. Thank you!
Yes, just to the left of the where it says, "Hallo, Anmelden, Konto und Listen" with a drop down arrow, there is a small globe with the letters "DE" and a drop down arrow. If you click on the drop down arrow by the "DE" you can choose English. Right now, I order my syringes from a diabetic supply online source, 4mdmedical.com. My GP has me using 18ga, 1/2" needles so that is what I have been ordering. You may find a cheaper source, if so, please let me know. Best to you!
Like you, I inject IM. That was what my GP recommended.
The link that I had provided was what I had ordered and is for 100 vials (Vitamin B12 Depot Rotexme 100X1 ml ). Received in just under three weeks time. Tracking was terrible once it left country of origin (and entered the black hole that is US Customs). A signature is required at time of delivery by USPS.
Thank you- I ordered them and I plan to inject more often than I have before, to see if my joint pain is improved, to see if I feel less tired, irritable. I just need to find the information here that will guide me in not going overboard and injecting too much. If I am not mistaken, I think I have read posts that some inject everyday. How does one know?
You will know by the way you feel. For me, if I feel symptoms coming back, I inject. I am on every other day until neuro symptoms stop improving but some days I inject every day, depending on how I feel. Since I have a lot of neuro issues, it is easy to tell when symptoms are coming back. If I hold off on injecting and symptoms still keep ramping up, I know for certain that it is time for another dose.
Thanks for this information. I looked on eBay. I see 18 ga, 1/2" needles with blunt or sharp tips. I would assume we use sharp tips, but if anyone can tell me what to buy, it would be helpful. And, if anyone has a good source for needles and syringes, that would be great.
Yes, sharp tips. Sorry, I have been offline for quite a while. You can also order from most diabetic supply sources. If you order in quantity you can save on shipping (if you know you are going to be self injecting over the long haul).
Have you considered oral B12 instead? Far cheaper and easier to take than IM. 1000 mcg B12 on a daily basis should work for your sister and also probably for yourself.
Has your gastroenterologist checked you for coeliac disease? The symptoms for coeliac disease are very similar to those you describe for your abdomen and it also prevents you from absorbing B12 properly.
Hi - Isn't this the most complex problem! I live in the Cleveland Clinic area and never heard of a Functional Medicine Dept. and would like someone to prescribe hydroxocobalamin for me. I am taking cyanocobalamin now and it just doesn't last for very long. Can you give me more information on who you are seeing?
Hello, the MD's name in Functional Medicine is Dr {edited by Admin}. She sees patients at the Main Campus, and also in the Chargin Falls location. Be prepared- functional medicine doctors view medicene a bit differently than regular mainstream docs. I agree with you- this is a very complex problem. I have said all along that all of the dots need to be connected with my health. I have thought from the beginning that everything was related. I still need some answers! Like all of us do.
Thank you so much for the information. Does functional medicine base your treatment on blood results? Are you feeling better? Will they continue giving you B12?
Hi tvellepern, I believe (not 100% sure) that Functional Medicine thinks that most disease is caused by initial inflammation. Your first appointment is 1 hr. She did give me 1 hr. Before going, you have to fill out a Living Matrix questionnaire- it took off and on, about 3 hrs to complete. I wanted to make sure I was as transparent as possible and was really careful about filling it out and answering truthfully. Questions are asked way back to your childhood -even if you were a breast fed or formula baby. They really believe that lots of inflammation is based on food sensitivities (and other things as well). They day of your first apt., you will also have blood drawn- so you bring a lunch with you to have after your apt and the labs are done. Then you have an apt. with a nutritionalist. You will then go home with an Elimination Diet. I was willing to comply, but found the Elimination diet very, very hard to stay on. I love to cook, and I have always fed my family very healthy. I could only stay on the diet for maybe 1 month to 1 1/2 months, and not 100% follow it. It was brutal. I was truthful with them at the office that I found it difficult, if not impossible to stay on it. I am not sure why I have some quirks in my cravings, but I do crave sweets sometimes, to the point of I almost feel like a drug addict. I don't know why, but I suspect that it has something to do with my condition. You cannot have any types of sugar or sweets, gluten, eggs, lots of types of meats, (only organic chicken or wild salmon). You can have some grains and some other things on it too like brown rice and some vegetable and some fruit. No milk products of any kind.
I forgot to add in my initial post that I am also lactose intolerant, and also was treated for h pylori about 3 years ago too. So I have Hashimotos Disease,am lactose intolerant, moderate high blood pressure, elevated lipids, gastritis, SIBO (I guess the reason for distended stomach), and I have phlebitis in the bottom of my left leg. I believe everything is related.
You also go home the first day with a stool test that has to be completed. I did it and it didn't show any parasites or things like that (thank goodness). Then you are supposed to follow your diet and meet with the health coach and also the nutritionalist before you go back to see Dr (name removed by admin). I did go back to Dr. (name removed by admin) and she verified that I had a positive breath test and she put me on herbal supplements for the SIBO. I took them for about a month and found them pretty expensive, and my distended stomach was not going down. In the meantime, I made an apt with the Digestive Disease dept and had some testing done there. I go back next week to talk the results over with the Doc. But I think this Doc is very conservative and would not treat me for the SIBO without doing a small intestine aspirate. I just want someone to treat me and I decided to contact the Functional Medicine Doc again and ask if she would prescribe the antibiotic treatment for me. She agreed to do that, and then is going to follow with an anitfungal RX. Then she said something about finishing the anti fungal and then putting me on good probiotics, because the stool test showed I was very very low in good bacteria. I last saw Dr. (name removed by admin) on apt 24th. She told me that clearing this SIBO up would take 6 months or more. And it can come back. So that is where I am right now. I have been living at doctor appointments since the beginning of the year and I am tired of it, but I want to get better. I don't know what else to do, other than to try to work with her to see if it works. So to answer your question about if I feel better, no, not yet. It is going to take time.
I love my functional practitioner! She provided answers to decades worth of health issues that specialists in traditional medicine completely missed. All they wanted to do was put me on antidepressants. Turns out I have multiple autoimmune issues that have been causing most, if not all, of my symptoms. Highly recommend the functional approach!
Would you be able to tell me which autoimmune issues you have? I have them as well- and believe that most issues I have aren all related as well. If you can tell me how your Functional Medicine doctor has treated you over the years, that might give me an indication of what to expect from mine. I plan to stay with her for at least 6 months to a year, to see if my conditions improve. The Gastroenterologist at the Cleveland Clinic that I saw after I sort of gave up with my Functional Medicine doctor poo hooed her treatment of SIBO and said he wasn't sure I had it. He prescribed an anti spasmotic drug for irritable bowl syndrome. That is not what I went to him for. With SIBO, you have motility issues with your bowels. The forward acting motion that is a normal bowel motion doesn't seem to work as well, and things well, sort of sit around. The gastroenterologist nurse practitioner that I had been seeing for years before going to the Cleveland Clinic, even called Functional Medicine quackery-right to my face.
Quackery, it is the complete opposite! I never saw any relief nor received any valid diagnosis until I found a functional practitioner! Everyone else, for nearly 20 years, labeled me with Fibromyalgia, Anxiety and Depression. That is it. Never bothered to test beyond basic blood panel. Treated me like a child who didn't know their own body. Frustrating beyond belief!
My functional practitioner has told me, and my research confirms, that all autoimmunity starts in the gut and that the key to effective treatment is in healing the gut. I am on an autoimmune diet (1 year so far) and Low Dose Naltrexone (LDN) and I have managed to bring down my antibodies significantly. So far I have tested positive for: Hashimoto's, PA, numerous antibodies against tissues related to the nervous system (myelin basic protein, Alpha and Beta Tubulin) with more testing yet to be done (I have to use a private lab for the nervous system tissues and the costs are quite expensive so I am waiting for further testing). What I have found so frustrating is that when I went to a neurologist with a copy of my blood work showing antibodies to myelin basic protein, etc., he ordered an MRI and when that came back as "normal" he told me flat out that he didn't know what was causing the antibodies and sent me on my merry way. My functional practitioner said that my autoimmune status as well as the chronic infection (EBV) are both causative factors in MS and that we have to work hard to get these things under control in order to prevent MS. I have finally found solid answers to my ever increasing list of symptoms and their increasing severity thanks to functional medicine. I have a long way to go but at least I see improvement on certain levels.
Hope that this info is helpful to you and hope you find the relief that you are looking for.
Thank you-this is vey useful information. When you mentioned myelin, I knew where your story was going. My sister has been gone for around 12 years. She had MS. She didn't die from it though. She had a heart attack while she was sleeping. I knew that myelin is damaged because she had MRIs of the brain and I guess they look for that damage there to confirm MS. I am interested in looking into the autoimmune diet. I have all the earmarks of a person who could also develop MS as well. I am on a mission to uncover and understand everything with my health. I owe it to my two sons ( 39 & 37). And also to my two grand daughters. I hope that they have not inherited anything bad from me, but I know that the chance is greater than I want to think about.
If you could post here when you get your private labs back, it would be interesting to know just what is found out. I hope nothing bad. But good or bad, we have to know, don't we?
What really makes me crazy is how Western Medicine is practiced. I am going back to the Cleveland Clinic Gastroenterologist next Wednesday to have him go over the results from my abdominal MRI, and also my upper scope. My Functional med doc said that it would be best for him to explain what, if anything they see. I might let him do my routine colonosopies and upper scopes- I still have to think about that. I just picked him out myself- I think there may be more outside the box thinkers at the Clinic in his department- the hard thing is finding them. I have the name of an RN from the Digestive Disease Dept. who might be able to help me with that. I am going to reach out to her next week when I go for my appointment, and try and pick her brain about who is on the cutting edge of Gastroenterology at the Cleveland Clinic.
I received my B12 ampules from Amazon Germany last week. Perfect-I am happy to have a stash. Does anyone think that the ability to order from Amazon Germany may be taken away in the future? Or, has it been available for many years? 100 vials came to about $101 US dollars. A bargain! I am asking, beca
Since the ones I ordered had an expiration date more than two years out, I stocked up just in case. It is so hard to know what will happen but I strongly suspect that if the sellers can make money, they will keep offering their products to us.
It sounds like many of your symptoms are from SIBO, in addition to PA. If I were you, I'd join a SIBO forum and see if they can help too. Check Facebook-- I know there are SIBO groups there.
*edit: I checked FB to see, and found one SIBO group with over 32,000 members! Someone there will know. They might be able to help with B12 as well, since SIBO can cause B12 deficiency. Here's the group: facebook.com/groups/4706283...
**edit: you mentioned motility, a little 5htp can help with that. The gut makes and uses serotonin, so 5htp can boost the levels in the gut and get it working again. I'm sure the SIBO group will know about this too.
Thank you, genesurf. I went for a follow up yesterday to the gastroenterologist at the Cleveland Clinic who did my upper scope and he went over those results and also the MRI results. He said he sees nothing to worry about. He said, in so many words, that there is no scientific evidence for treating SIBO with xifaxim and then with an anti fungal (nystatin), followed by a good probiotic to repopulate the small intestine with good bacteria. That is what the Functional Medicine doctor at the Cleveland Clinic is doing right now with me. She told me at my last visit that it will take a good 6 months to get back to some kind of normal with the SIBO.
The gastroenterologist I saw yesterday said that 50% of the time, the breath tests have false positives. He said that I failed on xifaxim once (Dec 2018) with no improvement to the terrible bloating and distention. He didn't order that course of treatment- a doc at University Hospitals in Cleveland did, when I first started looking into just what is wrong with me, with a whole group of doctors that I never had access to before I went on medicare with another insurance company. I have had this distention for over 5 years. I am 66 years old and look like I am going to deliver in a month. The rest of my body looks pretty normal, but this abdomen is just wild looking.
I don't know what to do- I am due to start the nystatin tomorrow (I have 2 full bottles that she (Functional Medicine) wants me to take).
The gastroenterologist yesterday prescribed nortriptyline. He said it could help me sleep better and it also could help my bloating. He said he thinks my digestive problems have resulted from childhood experiences that I just cannot shake. I also lost a bother in law and his wife (my sister) within 6 months of one another about 10 years ago and that affected me deeply. Add to the problems- my mother who is the source of some bad childhood memories is 96 years old and lives with us. I have some deep seated resentment towards her, and now I am taking care of her. So the doc may have a point about my inner feelings affecting my health. He said some people are just very sensitive, and it doesn't sometimes bode well for good digestive health. It does make sense. This medicine, (nortriptyline) helps some people he says, because all of the nerves in the digestive tract are connected to the spinal cord, and on into the brain. I am going to give it a try- I just cannot decide whether to do that RX at the same time that I am starting the nystatin.
I sound like a hypochondriac, but, truly, I am not. Going to the doctor is not a favorite past time of mine, LOL!
Long story short: I am seeing two different doctors at the Cleveland Clinic for the same problem, who have VERY different views on what is going on with me.
Many people with SIBO have long and complex medical histories due to misdiagnosis... I really think you might find some similarities with the people in the SIBO group, and see how others have treated it.
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