What can be done about foot pain/burning

[rosehill]

It is waking me up at night and keeping me from resting well. I haven't posted in a while. I felt I was doing better with this foot problem, when I was injecting hydro B12 every other day. The nurse practitioner at my gastro office asked me to stop giving myself a shot that often and asked me to try doing it only once a week. They are trying to help me with my SIBO, which they say is related to the pernicious anemia problem. Makes sense. I have been on 3 different antibiotic regimens.... which have helped slightly, but I still have some pretty severe abdominal bloating. I am starting to loose faith that I am ever going to get these problems under control.

[wedgewood]

I can empathise with you on both points that you mention . It took many years for me to get a diagnosis . I had the usual symptoms - the exhaustion , breathlessness , confusion , anxiety etc, , plus numb feet , and the gut problems of terrible bloating, burping , nauseous reflux and stomach pain that came in waves . After I managed to get a diagnosis of P.A. I went to see a gastroenterologist, who told me that having P.A. meant that I had no , or very little stomach acid ( Hypochlorhydria/ Achlorhydria) for which there was no treatment .The P.A. antibodies destroy the action of the parietal cells in the stomach , which produce the Intrinsic Factor and the stomach acid , both of which are necessary for the absorption of vitamin B12 . He did give me some preparation to use , but it was totally useless . After reading a lot ,and discovering that having low stomach acid leads to bad bacteria getting the upper hand and upsetting the stomach flora, causing those gut problems , I embarked on a course of PRObiotics plus prebiotics . I used a water- based probiotic called Symprove , which sorted the problem . But I try to eat some foods that have natural probiotics — like organic raw sauerkraut , kefir , natural yoghurt , kimchi .etc . I cannot understand why you have been prescribed ANTIbiotics , which also destroy good ( and bad) bacteria in your stomach . I find that very strange ......

When Achloryhdria is severe , many patients actually need to use Betaine hydrochloric acid with pepsin capsules ( Amazon ) when they eat a main meal with protein .

I Didn’t need these , but I used to take an acidic drink with main meals containing protein . I used diluted Organic Apple cider vinegar with the mother , or something else acidic . My gut problems have now disappeared! My numb feet have turned into burning uncomfortable feet which burn like hell ,but I can now drive again , which is great . . I’m afraid that is irreversible now and I have learned to live with it . I do hope that you find solutions to your health problems , . Having B12 injections every other day I don’t think would affect your gut problem . And as you probably know , you cannot overdose on vitamin B12 .... Best wishes .

[MoKayD in reply to wedgewood]

I recently started taking a digestive enzyme capsule (Digestion GB) with each meal and an HCL Pepsin capsule with meals that are meat heavy. It really seems to be helping with my digestive issues. My B12 issue seems to have started about 2 years after my gall bladder was removed. I keep wondering if there could be a correlation. I'm going to buy Symprove and add it to my regimen. Thank you for reminding about it.

[Hidden in reply to wedgewood]

Antibiotic treatment for SIBO is by the drug rifixamin a very specific antibiotic which operates only within the small intestines where SIBO exists. It does not kill good bacteria in the colon. Note that SIBO is an overgrowth of both good AND bad bacteria in the small intestine where they metabolise aspects of your food causing some very bad symptoms. It is quite different from dysbiosis in the colon in which case probiotics can help. Taking probiotics with an unresolved SIBO infection will feed bacteria where you do not want them and is not recommended. I have suffered with both SIBO and dysbiosis so have learned all this to my cost. You need a good gastroenterologist to help sort this out.

[wedgewood in reply to Hidden]

Rosehill did not mention Rifixamin , but having been prescribed 3 different antibiotics . Rosehill has been diagnosed with Pernicious Anaemia, which means she has no , or very little stomach acid . This will cause SIBO -like problems . I had the same problem , solved quite quickly with the use of a water-based probiotic , and using probiotic foods . So I was passing on what I had experienced.

[Hidden in reply to wedgewood]

She did not mention rifixamin but it is a first line treatment for SIBO. Especially if she is in the states. It’s efficacy is such it is now used as a first line treatment in the U.K. it is an antibiotic and there are several within the same family that are specific to SiBO that are not they type that kill everything. You said you couldn’t understand why they’d prescribe antibiotics and I’m saying I can especially if they bare like rifixamin. The thing is neither of us know so I’m not sure why you needed to respond to me in the way you did. You do not say if you were diagnosed with SIBO but if you were then I would be very surprised any gastroenterologist telling you to take probiotics and just as bad prebiotics as they are assumed to make the issue worse. If you had more general dysbiosis then probiotics and probiotics can help. I was cautioning the poster from taking probiotics and prebiotic with unresolved SIBO which you offered as advice because it helped you. If you did not have SIBO but symptoms of dysbiosis then that is presumably why it helped. I was equally trying to be helpful as a diagnosed SIBO sufferer which is recurrent and which is not helped by probiotics and probiotics until it is first killed (by appropriate antibiotic treatment). I am under the treatment at a fully qualified UK gastroenterologist so I know the advice I gave is correct.

[wedgewood]

Just noticed that you are in the United States , and that you inject B12 Hydroxocobalamin . I would be interested to know from where you obtain it . We often get members in the U.S. who would like to obtain some Hydroxocobalamin ampoules for self-injection . Thank you .

[Litatamon in reply to wedgewood]

I know that some have ordered through Bodfeld, using Amazon pay - order linked to their Amazon account.

[Litatamon in reply to Litatamon]

I hate to give erroneous information. They definitely were shipping to the States in May and possibly June, using Amazon pay.

I wonder if they have now stopped this practice if others are having issues.

[fbirder]

As wedgewood says, you very likely have achlorhydria, and that is a known cause of SIBO - omicsonline.org/open-access....

Killing the bacteria with antibiotics isn't going to help much if the underlying cause isn't treated at the same time, as the naughty bacteria will just grow back again.

Ask the doctor to look into achlorhydria and suggest you might try replacing the missing stomach acid. If you don't have a blinkered doc then they might consider that.

[rosehill]

Thank you very much to Wedgwood, birder, litatamon. I have been dealing with this basketball sized stomach bloating for so long, that I have had a lot of time to think about the condition. Before I went to this gastroenterologist, I had been to many doctors who had no idea what was wrong with me. A gastroenterologist in my city had the nerve to tell me to do core exercises. A Functional Medicine doc at the Cleveland Clinic treated me for a year and couldn't clear the SIBO up with both antibiotics (rifaximin) and herbs. Finally I asked her to refer me to someone, since I wasn't getting anywhere with her. The gastroenterologist that she referred me to is the one who explained to me that the PA and the SIBO are most certainly related. No one ever explained it that way to me. He did run me through a course of 2 antibiotics taken at one time, then put me on a sulfa drug. I finished the sulfa drug a month ago, and now the bad bloating is coming back. This doc also has me taking a new drug called Motegrity for motility. AlsoB1, B6 & alpha lipoic acid to try and help with the foot problems. So far, the supplements have not helped. When this doc did an upper scope on me in March, he said he couldn't even get a cc of stomach acid from me. He wanted to measure the PH of my stomach and couldn't even get a sample. I am hopeful that the capsules can help replicate what my stomach isn't producing, and hopeful that my SIBO will clear up as well. I might add that for a long time, I have felt that my body isn't using food like a normal person's body would be. I eat healthy, but just cannot seem to loose any weight. I hover around 175-180lbs, and on a 5'6" medium size frame, that is too much. One would think that there would be malabsorption with SIBO, and weight loss. With me, it is the opposite. I had just started a healthy routine of walking 3 miles a day on the treadmill when corona virus hit in March, so I will not be going back to the gym for a long time. I also have autoimmune thyroid disease, as well as lactose intolerance. I do consume milk products, such as cheese, cottage cheese, but am taking 2 of the lactase tabs when I do. Sometimes I forget, so I am wondering how that is impacting my bloating as well. So much to think about! I will not give up though. I realize that you have to be your own advocate with health problems, because if you aren't, no one else will do it for you.

I buy my B12 from: amazon.de/gp/product/B00KTG...

100 vials for around $80 USD including shipping. Seems like a good value to me.

[wedgewood in reply to rosehill]

Thank you for your reply . I do hope that you improve . The “gut problem “ drove me mad 5 years ago . Now , after the probiotic treatment , it has disappeared . But I do still “ look after “ my gut as well as possible . , I really believe that the fermented foods help enormously . Thank you also for the tip of how you obtain your Hydroxocobalamin. ampoules . We hope to hear from you again with better news .

, All the best .

[EiCa in reply to rosehill]

Hello rosehill,

I sympathize with your gut problems. I eat a very limited diet, in small amounts, and have constant pain, especially if I eat meat. My gastroenterologist basically refused to even try and treat me anymore until I get my b12 level up. He said that my b12 level is so low it could likely be part of the problem, if not THE problem.

On your dairy intolerance, I, too, get extremely bloated from any dairy. Have you considered that you may be reacting to the casein (the protein) in milk and not the lactose? In my case, I have no idea which I react to, but some food allergy tests showed my intolerance to casein to be way way off to the extreme end of high.

I wonder if cutting out all dairy for a trial period would give you some answers? I cannot tolerate even a very small piece of cheese or even yogurt. Meat is the biggest problem for me though and causes the most pain. I am going to give digestive enzymes another try after reading this thread today.

I am also going to look at the link you posted for your injections.

Thank you.

Eileen

[rosehill in reply to EiCa]

Hi Eileen, I feel for you. It's odd, but I have no abdominal pain with all of this bloating. I know it is crazy, but I don't. I just look like I am ready to delivery a baby. And I am going to be 67 in 10 days! (ha ha). I will talk to my doc about being tested for casein. I didn't know about that. I will also ask him to look at my test results for when I was tested for lactose intolerance with the other doctor who didn't think I had a medical problem, and instructed me to do core exercises. LOL at him! Needless to say, I have not gone back to him and I also moved my husband to the gastro doc I am seeing now. I hope you can order some B12 from Amazon Germany. I get the syringes from Amazon in the US.

[EiCa in reply to rosehill]

Well, rosehill, I am going to be 66, and I, too, look pregnant sometime. I don't touch dairy though. I just suspect dairy because I used to have a lot of it, and then I started getting bloated and realized it was causal. My functional medicine doctor tested me for milk allergy...not just lactose, but casein. Most traditional doctors don't recognize the efficacy of IgG food-allergy testing, but my extremely high response to casein has been validated by my actual response to it. I would NEVER consider drinking any milk.

Truly, the best testing for food allergies is elimination and then re-introduction. So if you take lactase, and still get bloated from dairy then casein is likely a problem too.

I am in the US and so far cannot get any ampules of B12 on-line that aren't ridiculously expensive. I called the compounding pharmacist that mixed up my trial of methycobolamin and he quoted a price of $70 for 30 ml.

I don't think I can order from Europe. I have looked at a lot of sites and I just can't see a way that allows Americans to order.

Best of luck.

Eileen

[Bonjourtristesse]

Hi, there is a book by Norman Robillard called fast tract diet which uses diet to control SIBO. I have found it very helpful (although I don’t have a diagnosis of PA). It agrees with all the points made above.

[wedgewood in reply to Bonjourtristesse]

Thanks for that post . I’m afraid there are many people who have P.A. ,who never get a diagnosis . The test is often( well about 50% of the time apparently) inconclusive . I try now not to use the word “ unreliable “ after a scientist who knows about the test explained that it was wrong to say that . You can get a negative result when you do have P.A. The symptoms are the all important evidence , but doctors usually go by the Intrinsic Antibody test unfortunately. You can have P.A. even if they are absent at the time of the test. Best to keep trying until they do appear ( but the NHS won’t do that!)

[Bonjourtristesse in reply to wedgewood]

I don't think I've been tested so can't say I don't have it - I also don't want to sound like I'm making PA recommendations. Doctor seems disinterested in finding any reasons for any of the symptoms I've had and simply prescribed anti acid medication (which I didn't take as understand it exacerbates the problem). There is so much crossover. But with good diet my acid reflux and digestion is much improved (while I follow it) so might be worth a shot. It is frustrating being so quickly dismissed.

[rosehill in reply to Bonjourtristesse]

Thank you, Bonjourtristesse. I will call my library and see if they have it. If they don't they may be able to borrow it from another library.

[Betterbets]

Tiger balm helped me when I had foot/toe pain and couldn’t sleep.

[rosehill]

Thanks to all who have answered. I have looked into the Betaine hydrochloric acid with pepsin. There seem to be different mg strengths. Some have as much as 520mg hcl with 21 mg pepsin, some have as low as 325 hcl with 82 mg of pepsin. Micro grams amounts are all over the place with different supplement makers. All say one capsule is the dosage. I would like to know the proper dosage so that I can make a good choice in which product I go with. Amazon has LOTS of them. I just bought a prebiotic with probiotic from Swanson Health Products and they sell one too. Any help would be appreciated.

Adding to the above information: My gastro office also instructed me to take VSL3 probiotic. It is REALLY expensive, so I picked one out on the Swanson Health Product website that has the same strains of bacteria. The only information that I do not have is the amounts of all of the streptococcus Thermophilus, Bifdobacterium breve, Bifidobacterium Longum,bifidobacterium infantis, Lactobacillus acidophilus, Lactobacillus plantarium, Lactobacillus Paracasei, Lactobacillus delbruecki subs. bulgaricus. The Swanson Health Product one has all of the above, but neither list the amounts. Hope this doesn't matter much. The Swanson Product was affordable for me. Hoping to get my digestive system moving like it should be. It certainly isn't normal right now.

I will try to find the tiger balm.

I ordered the B12 from Germany last evening and it has shipped already. It will probably be here in a little over a week, if anyone is looking to order some.

[rosehill]

Sorry, all, for my confusing posts. I have been on two courses of rifaximin. The first time in Dec of 2018, prescribed by an allergy doctor who I was referred to by my endocrinologist. I didn't respond to it, then was referred to a gastroenterologist by the allergy doc, who told me he thought I had leaky gut. He retired soon after that, and that is when I decided to to to the functional medicene doctor at the Cleveland Clinic. She treated me once again with rifaxamin, and the bloating continued. I had multiple breaths tests in between. I stayed with the functional medicine doctor for about a year, and she tried antimicrobial herbs as well. Nothing helped. So then I asked her to refer me to someone else, and she sent me to my current gastroenterologist who says he treats SIBO all the time. When I first saw his NP, the pandemic was just starting. He did an upper scope on me in March, but I have had no office appointments with him. Just a virtual visit one. I am going to make an office appointment with him, and see what he says. I sent a my chart message to his NP last Thursday, asking about the HCL and Pepsid treatments. I do know that when I first starting going to his office, I was told that some patients require being on maintenance doses of antibiotics. We have to get together to sort out where we are going from here. I have had this for so long (6+), that a little more time to figure things out won't matter, LOL. So I have taken rifaximin two times.

[rosehill]

If anyone here is in the US and is using an HCL product with pepsin as described above, can you please provide the product name and manufacturer? I have been trying to pick out a formula on amazon, eBay or the web, and am starting to get very confused about which one to purchase. I finally decided on a NutriCoast brand this morning, because the hcl and pepsin amounts seemed good in it, only to read on a review on Amazon that the manufacturer sources their HCL and Pepsin from Aspergillus Niger aka MOLD. I am getting very confused. Some bottles of this product can be as much as $40. I am trying to be as cost conscious as can be.

[Foggyme Administrator in reply to rosehill]

Rosehill...you may get a better response if you put this request up as a new post. Once a post slips down the forum page, it gets less attention and as this one is fourteen days old, your recent addition won't be seen by many (if any) in the forum. Also a good idea to put USA in the title...it will get the attention of our friends over the pond. 👍

[rosehill in reply to Foggyme]

Thank you, foggy, will do!