While I am at it...shortness of breath

[EiCa]

I get shortness of breath that is pretty severe. I do have COPD. Yesterday it was crippling and lasted all day. It gets much worse when I lie down. Is this a common symptom of B12 deficiency? I did an injection early in the day, and the shortness of breath was gone not until about 22 hours later. Seems like it might have kicked in earlier if B12 was the cause.

Eileen

[Narwhal10]

Sorry to read EiCa,

Shortness of Breath (S.O.B.) can be pretty challenging. I must admit my knowledge of COPD is limited. May I ask what type of treatment and management you are receiving ?

I can see that you have a history of Small Intestinal Bacterial Overgrowth. Plus, a significant weight loss, pain when eating and other conditions of the gastrointestinal tract.

I believe it time you consult a dietician. They are the specialist in dietetics (biochemistry). They have excellent knowledge. I am fully aware that P.A./AMAG/B12D can affect the pulmonary system (medical jargon meaning lungs). It can also mean that the blood cannot carry enough oxygen.

However, so can other deficiencies such as iron and copper. You, Eileen, appear not to be breaking down food to obtain essential micronutrients (you are diagnosed with pancreatic insufficiency) and in cases, of SIBO, gut microbiome dysbiosis, those nasty critters are stealing the ones that you can obtain. Therefore, you are malnourished. It is extremely important to find out which vitamins, minerals and amino acids (building blocks of protein) you are deficient in. Please note that ferritin and globulin are blood proteins.

I have read that your PCP is unconcerned whilst I, on the other hand, am. Unfortunately, most doctors receive little to no training in nutrition. I know that people who are short of breath, on exertion, can feel dizzy and faint. As a consequence, sadly, you are at risk of fall. I would hate for you to black out and break a bone, causing more injury to yourself.

Please make an appointment with a knowledgable dietician, currently my lovely, you have a poor Quality of Life.

Sending my best wishes from over the Pond.

🐳

[EiCa in reply to Narwhal10]

Thank you Narwhal. I have been to several different dieticians and gastroenterologists over the past decade. I can’t beat the SIBO. I also have Barrett’s esophagus, IBS and gastroparesis, food allergies/sensitivities. Dieticians give up quite easily, I find, when their standard prescribed fix doesn’t work. I have been to many. I have had, and am currently having, more micro-nutrient tests. My iron, ferritin and copper are fine. My vitamin D goes up to 24 at best with sun exposure (a lot) but plummets for half the year. I do not absorb fat-soluble vitamins. PPI’s made me worse. I used them for 10 years or so. (I have Barrett’s esophagus). The SIBO resulted from a serious infection acquired in Mexico that I never really got over and it spread to my small intestines. Antibiotics make it worse. It’s been 12 years since the infection. I am currently trying to bring up my vitamin C as it is well below range. Calcium and dairy stop my motility and I have to stop eating. My gastroenterologist is adamant that there is nothing wrong with me and all I need to do is eat more. I eat as much as my food sensitivities and pain allow every day. I am getting sicker. Currently my PCP ordered more nutrient tests to see if we can get some of these nutrients compounded for injection to bypass my gut. The SIBO has resisted all special elimination diets. I eat healthy organic food and just try to keep things moving. Believe me, I have left no stone unturned. I am also histamine intolerant and have high oxalate. Pro and pre-biotics cause increased pain.

I don’t do well with the inhalers that are standard treatment for COPD. I don’t have trouble breathing unless lying down flat. I have suffered from allergies, indoor and outdoor, since birth. I do not smoke but was exposed to a lot of second hand smoke through age 17. My COPD is level one; just barely diagnosed. I control my COPD by controlling my environment and watching air quality. I wore an N95 mask most of the time since late March until now outside as the air quality is poor here. We have air cleaners in every room and work hard at controlling triggers. I just don’t do well on drugs at all. I recently had a very bad month-long disabling side effect to a new drug. I look for natural ways. (I’ve had 3 sinus surgeries)

I never have reflux though I agree GERD could be causing the shortness of breath.

I have had no quality of life forever.

I keep trying.

Thanks for caring and thinking about my case. Doctors are worthless. Dieticians are not but they all say “you are a hard case.”

I have made a few gains lately adding in some raw foods w/o increased pain. (Apple, walnuts, cucumber, romaine and sometimes green pepper. It’s progress. My folate is slowly going up.

Thanks Narwhal.

Eileen

[EiCa in reply to EiCa]

One more thing, Narwhal. My serum protein level is decent and was up last time checked.

[Narwhal10 in reply to EiCa]

Oh Eileen,

I am so sorry for all you have been through. It is a very long hard journey for you. I got into functional medicine as I was so poorly and worked with 3 of them.

People just do not understand, SIBO/SI Archea or Fungal Overgrowth. Well, Technoid on here does. The motility of the gut is due to poor peristalsis (medical word for contractions type thing) and the Migrating Motor Complex (medical word for an electrical type wave for the gut).

You most probably know all this but for others reading.

pubmed.ncbi.nlm.nih.gov/224...

I am pleased to read you are into natural ways and remedies as am I. I was speaking to somebody today about oxalates, then explained it was in spinach. Yes, food is biochemistry. How else do we get the building blocks to make blood, bones, teeth, muscles, teeth, hair ?

I took Toxaprevent - I am not a sales woman. I have reacted to foods, within a couple of minutes, with eczema patches, hives, nerve pain, dizziness, felt drunk, nasal decongestion, struggling to breathe. I sounded like Darth Vader. Toxaprevent mops up heavy metals and histamine in the gut. Although, you have to do what is right for you. You know your body best and what you can afford.

I had a gut transit test (to prove slow transit) and am prescribed a prokinetic. How effective it is, is another story. People wrongly believe I have just coeliac disease and P.A. No, I have no good bacteria, excess nasties. I eat one meal a day, I do not feel hunger, it just sits in my gut. I eat because I know I have to. Yes, I am in pain and it is far easier to tell people what I can eat (about 20 food items).

I get asked, Would you like to go for a meal ?

No, thanks. Sorry, I am late I was stuck in the bathroom. Yesterday, I could not leave my home because I am in pain and the toilet is my Best Friend.

I am sorry to read of Mexico and a serious infection has to be treated promptly. Antibiotics can be hit or miss. The body does remember, especially the gut microbiome.

I am pleased to learn that you are your own doctor with your COPD. You know what works for you and how to manage it..

That is the sad thing Eileen, the poor Quality of Life which as women, we endure. I do hope you are slowly finding a way and I am thinking of you.

[EiCa in reply to Narwhal10]

I don't mean to sound arrogant, Narwhal, but I feel like I could probably pass as a dietician. I have been studying digestion from every single angle for so long. I am well-versed in the Migrating Motor complex. I try to go long enough between meals to allow it to kick in but I am border-line diabetic (controlled only by diet forever) so I get pretty hypoglycemic if I go too long. I have tried to fast overnight for as long as I can but after 12-13 hours, I HAVE to eat or I get very shaky and dizzy.

I have tried all the diets. I DO think I react to FODMAPS so I try to keep them low, but right now I am tolerating 1/2 small apple so that is good. I have high oxalate so that is why I eat romaine every day...for the folate and the fiber...but all the other greens are high oxalate. My motility is great, for the most part, if I eat 2 homemade organic muffins made of ground flax, ground oats, olive oil, water and about 1/6 of one egg. (I test positive to eggs on allergy tests) I try to stay away from gluten, dairy, citrus, high acid foods, high FODMAP, high histamine, etc. You get the picture. I am not strictly adhering to any specific diet but kind of "watching" all these things and only strictly avoiding the ones I named. The muffins don't sound like much but w/o them I would have no meat on my bones whatsoever. I eat free range, organic chicken in 3 oz. servings as I need protein to balance my blood sugar. I don't eat any other grains.

When I have had microbiome testing done I have plenty of good bacteria but am very short on some. Pre and pro biotics cause me much pain as they feed the bad bugs as well as the good. My muffins are my prokinetic! 😀 I don't know how many foods I eat because I won't count them. I don't think I would make it to 20.

Starting B12 injections was one of the things that helped me in general. I am now trying to zero in on a way to get the other B vitamins into me as I just don't absorb things from food or supplements.

Calcium is a huge problem for me as it stops my motility and as a result have severe osteoporosis. I have to try one thing at a time (and then recover from it) so I can sort out what is helping and what may be doing harm.

The ONLY way I can see my way out of this is doing a long water fast and at 86# I would not survive it. I have very low blood pressure.

Sorry this is so long but I do have one question...I used to skip meals when my gut hurt but I was losing too much weight. I now eat when my gut hurts anyway. Do you think I am harming myself (I suppose it depends on what I eat) or is it better to get some nutrients in me and absorb what I can? If I didn't eat when I was in pain, I would never eat except when I have gone 12 or so hours w/o food.

Thanks for your interest. BTW, my PCP is a functional medicine doctor. I always turn to functional medicine first. Drugs are not my friend, but neither are many supplements. My gastroenterologist knows nothing about nutrition and subtly mocks me (sometimes not even so subtle.)

I appreciate your time, Narwhal.

Eileen

[Narwhal10 in reply to EiCa]

Gosh, Eileen, I am a pretty subtle person, and I am quietly conveying my story as well so, I totally empathise with you.

I was left for dead. They did not know me as a person. I booked a second private dietician’s appointment merely for documentation. I asked them to write to my PCP on my behalf for investigations. They stated, I must admit, I am quite intimidated by your knowledge.

I am permanently disabled due to severe delays in diagnoses. It does not get me down, I just live with it. I do, however, audit. Nobody likes auditors because it is a meticulous scrutiny and investigation. We are not scary people, we are just factual and objective.

When a person is communicating via technology, the other person has no idea, if the other person, is using a Speech Recognition piece of software, have somebody else typing for them, are wheelchair bound or anything else. People just assume.

😘

[EiCa in reply to Narwhal10]

I feel "written off" or left for dead as well. I am permanently disabled as well. I live with it as well. What more can I do? 🤷‍♂️

[bookish in reply to EiCa]

Hi, sorry to hijack your post. I noticed on an older one that you said that you reacted very badly to your original cyano injections and then didn't do well with methyl but were ok with hydroxo. You mentioned having known genetic methylation issues, but I can't find a post where you say what they are. I have some methylation-related SNPs (MTHFR, MTR, COMT) and am trying to work out my likely reaction to injections, which have been offered for the first time (been on high dose oral and subligual for years). Would you mind telling me what SNPs (if you mean you have polymorphisms) or which other genetics you have? Feel free to PM me if you would rather. Thank you.

PS in the message above you say that you have issues with calcium, and osteo. Are you taking/using vit D and magnesium? Both are probably more important than the calcium, and magnesium possibly the most needed. K2 as well. I use vit D and magnesium on the skin to avoid gut. Best wishes

[EiCa in reply to bookish]

Hi,

I’m am heterozygous for MTHFR1298 and homozygous for MTRR (a much lesser know genetic SNP but significant for methylation. I think I am hetero for COMT as well.

Regarding vitamin D I am homozygous for the VDR SNP which is some explanation for my weird reaction to Vitamin D supplements. I am totally addressing that now by not worry about sun exposure and getting 30-60 minutes on sunny days on about half my body seasonally. (Walking). Even with that much sun exposure I have not been able to get my D up over 27. It has been as low as 7. (I see a dermatologist twice a year) I do not react well to supplements generally as I have malabsorption. I try to get magnesium from the foods I eat.

Hope this helps. I did not have the genetic tests until after these deficiencies had been present (and ignored by my docs) for many years. By then much damage had been done.

[bookish in reply to EiCa]

It does indeed help, and thank you for the quick reply! I am hetero for MTHFR 677, no variant 1298, and my MTRR was no variant, hetero MTR (those two are intricately connected) and homo slow COMT. Glad that you are amanging to get the D ok with more sunlight. I was the same, did my own genetic tests years after starting symptoms (suspect I had some from birth) and having got good reactions mainly from B12 and methylfolate but being refused tests to find out why they helped. Cheers

[EiCa in reply to Narwhal10]

I am going to look up Toxaprevent. No stone unturned!

[Technoid in reply to Narwhal10]

"People just do not understand, SIBO/SI Archea or Fungal Overgrowth. Well, Technoid on here does. "

I must protest! I am only in the early stages of learning about these things 😅. They are quite foreign to me as other than a few months at the end of B12 deficiency and start of treatment I never really had any experience of gut issues. I do have those nice microbiome books on my (very long) reading list, but I am surrounded by textbooks right now 😅, prepping for next exam so they will have to wait.

I wouldn't know where to start with the issues you described EiCa, but if your Gastroenterologist knows nothing about nutrition you definetely need a new Gastroenterologist!

[EiCa in reply to Technoid]

Most gastroenterologists and doctors know little about nutrition in my experience. As far as I am concerned that is where medical training should start. It would prevent/cure a lot of disease.

[am111]

It could be GERD. I get that on B12 deficiency. You can try a PPI to see if it helps.