Showstoppers on Freddd’s protocol

[Idie]

I have been on the old Freddd’protocol for over 15 years and generally with good success until I got a little lax on consistency. About a year ago I decided to take B-Right, Vitamin D, Vitamin K, Magnesium etc. I did well on thowe for about 6 months and was only taking intermittent low dose folate and B12). After about 6 months, I began to have extreme symptoms (although only a few of the original B12 deficiency symptoms). After having an intense anxiety attack (never had those before) I tried a sublingual Solgar Folate tablet……holy smokes, the intense anxiety stopped almost instantly. FOLATE was obviously an issue. Small doses of folate held it at bay but not for longer than 2 hours. So I am up to 20+mg of folate and large doses of B12. For over a month. I am like everyone else struggling to manage the potassium problem.

Now for the questions:

A decade ago, Freddd wisely advised me that I would know a “showstopper” when it happened. Way back then, for me it was L-carnitine and Zinc—-I added those at at six weeks into the protocol which was simply B12, folate, B-right. I remember telling Freddd I would never take l-carnitine and zinc again. It was such a shock to me as to how intense the reactions felt.—-I had extreme weakness and really felt like I was going to need to go to the ER. He told me that I would likely never have that same intense reaction again and that I needed to try them again. I waited a few days and mustered up the courage to try it again. Nothing—-no reaction at all. I really appreciated his “showstopper” label and his nudge to try again.

It seems by reading these forums now that things are changed as to reactions—-they seem to be lasting longer than 2 days.

I tried the B-right again which I had previously done well on just less than a year ago and I can not tolerate it past two days now since titrating the folate and B12 to higher levels (20-25 mg of folate per day and 1 - 10 mg injection of Methyl B first thing in the am and then sublinguals throughout the day. for when I add my additional doses of folate.

As I get ready to add refeeding items………

First Question: The showstoppers seem to be many more than I dealt with before and it appears the intense reactions are hanging on longer for many people. Why ? I really want a two day reaction…….wishful thinking?

Second Question: Are there ”showstoppers” that behave as I initially described above——meaning the reaction is very short lived (2 days) If so which ones are they?

Finally, I think so many people don’t know exactly what the reactions are when they read “I had a bad reaction.“ What exactly does that mean,? So for explanation that might help people——my reaction has always been intense weakness, dizzy, and sort of our of it mentally, so much so that I was house bound for those 2 days of intensity and then I improved rapidly.

Refeeding makes such logical sense to me having been through this before and there is a deeper knowledge base here than before—-grateful for that!

I didn’t take potassium way back when so I suspect that that may have helped in my two day intensity and of course didn’t realize how important the folate piece was back then. I did really well with small dose folate for a long time—-or at least I thought I was. As of right now, my dosing of B12 and Folate only last about 5 hours (mostly the folate wears off I think). I’m dosing 3 times a day. The nights seem to be the worst—insomnia, and feeling pretty crappy in the morning.

Finally—-so happy to hear of Freddd’s amazing progress and a few others that are doing so well.

Thanks for any observations and thoughts.

Idie

 

[linusbert]

@TinaT you might be interested in this.

 

[TinaT]

@TinaT you might be interested in this.

Thank you. At the moment, these highly complex regimines are just scaring me to death. There is no way I could tolerate the high doses of B12 or any of the other stuff. I'm dying with only 1-2 a week shots.

I am trying to add a couple of things very slowly. Right now I'm trying to find an iron pill and that's not even working. I know I need folate. I'm taking Ferrasorb, which has folate and a couple of other cofactors.

And cal / mag. Low dose D + sunlight.

That's about it.

I'll never make it if I have to go down the massive supplement road. Still, I really appreciate your thinking of me.

In a Facebook group, someone just suggested I could have H pylori and that can cause reflux. I looked it up and that's correct. I don't know how valuable the non invasive tests are. But I guess that's a potential complication of low B12. And I do have some symptoms. I can't go through an endoscopy (more anesthesia). I just can't. B

 

[Idie]

Thank you. At the moment, these highly complex regimines are just scaring me to death. There is no way I could tolerate the high doses of B12 or any of the other stuff. I'm dying with only 1-2 a week shots.

I am trying to add a couple of things very slowly. Right now I'm trying to find an iron pill and that's not even working. I know I need folate. I'm taking Ferrasorb, which has folate and a couple of other cofactors.

And cal / mag. Low dose D + sunlight.

That's about it.

I'll never make it if I have to go down the massive supplement road. Still, I really appreciate your thinking of me.

In a Facebook group, someone just suggested I could have H pylori and that can cause reflux. I looked it up and that's correct. I don't know how valuable the non invasive tests are. But I guess that's a potential complication of low B12. And I do have some symptoms. I can't go through an endoscopy (more anesthesia). I just can't. B

Hi Tina——I know exactly where you are at and I empathize with you. I was very sick when I found the Freddd posts several years ago. Sick enough that I didn’t think I could make it through….but I did. I guess when I realized there was no way around it——only a way through it that I reluctantly took the leap. I used to tell my husband that I would have to walk through the dark valley to get to the other side, It took about a month and then the improvement was enough that I knew something was working. I hope you have someone who can walk this path with you whatever you decide. B12 deficiency is a miserable thing but can be well managed with consistency. I wish I would have had a personal guide when I went through this the first time. Freddd and a gentleman named Kevin shared their knowledge with me and I am grateful for their support and guidance. The forums were much smaller then and they posted nearly every day-and that helped tremendously.

I thought I would mention that I thought I had acid reflux during that time and I was put on so many medications and went through 2 endoscopies. If you had an upper endoscopy, I would think they would have checked for H pylori too? For me, it was not acid reflux and the endoscopies showed nothing other than some redness in my stomach. I started on b-12 sublinguals and it helped some but when I moved to b-12 injections all the gastritis and pain in my esophagus was totally gone in 5 days and it never came back. Luckily I had a friend who was a PhD/MD who was researching B-12 deficiency and I asked her why she thought that was. She hypothesized that because the epithelial tissues turn over very quickly and when you have a severe B-12 deficiency they cannot turn over efficiently and you can get soreness in the tissues of the esophagus and stomach just like the mouth soreness that is a common thing with low B12 and folate. I was put on big doses of acid reflux meds and they did nothing to relieve the pain in my esophagus or the pain from the gastritis. This was my personal experience and it may not pertain to you but I learned from that experience that low b12 and low folate can cause so many problems with soft tissues.

I wish you the best and am happy to answer any questions that you may have.

 

[TinaT]

Hi Tina——I know exactly where you are at and I empathize with you. I was very sick when I found the Freddd posts several years ago. Sick enough that I didn’t think I could make it through….but I did. I guess when I realized there was no way around it——only a way through it that I reluctantly took the leap. I used to tell my husband that I would have to walk through the dark valley to get to the other side, It took about a month and then the improvement was enough that I knew something was working. I hope you have someone who can walk this path with you whatever you decide. B12 deficiency is a miserable thing but can be well managed with consistency. I wish I would have had a personal guide when I went through this the first time. Freddd and a gentleman named Kevin shared their knowledge with me and I am grateful for their support and guidance. The forums were much smaller then and they posted nearly every day-and that helped tremendously.

I thought I would mention that I thought I had acid reflux during that time and I was put on so many medications and went through 2 endoscopies. If you had an upper endoscopy, I would think they would have checked for H pylori too? For me, it was not acid reflux and the endoscopies showed nothing other than some redness in my stomach. I started on b-12 sublinguals and it helped some but when I moved to b-12 injections all the gastritis and pain in my esophagus was totally gone in 5 days and it never came back. Luckily I had a friend who was a PhD/MD who was researching B-12 deficiency and I asked her why she thought that was. She hypothesized that because the epithelial tissues turn over very quickly and when you have a severe B-12 deficiency they cannot turn over efficiently and you can get soreness in the tissues of the esophagus and stomach just like the mouth soreness that is a common thing with low B12 and folate. I was put on big doses of acid reflux meds and they did nothing to relieve the pain in my esophagus or the pain from the gastritis. This was my personal experience and it may not pertain to you but I learned from that experience that low b12 and low folate can cause so many problems with soft tissues.

I wish you the best and am happy to answer any questions that you may have.

Hi Idie. it's really late and I need to try to sleep. I will write more later. But your comment was really nice. This is a very, very long story, with a lot of twists and turns, but actually I've arrived at this B12 deficiency awareness after I've already spent 3 solid years researching primarily two unrelated medical conditions, very serious to me (and actually several secondary type issues). The second one being reflux. So to get here after I've already spent thousands of hours and dollars trying to defeat those other illnesses. I'm sure everyone here knows. I'm just so completely defeated and despondent. And I truly know that I don't respond well at all to almost any supplement. I've spent many thousands on all kinds of supplements and tried them all.

So, for now anyway, I need to stick to the most basic protocol, adding things one at a time, and pray for a miracle.

It's confusing bc some people appear to fully recover, and others languish. Everyone seems to agree that they got worse before better with B12, making any production impossible.

I do have a question. The third shot caused low potassium. That's been really bad. I'm extremely nervous that is not going to go away. But I'm trying to figure out whether I should get another shot, which I'm hoping would continue healing my reflux. That has remarkably improved with every shot, but then it gets worse again after about 4 days. It's bad now. Reflux has destroyed my quality of life for 1.5 years. Totally.

So that was a great development.

However, this low potassium situation is actually worse, bc that's taken my strength. I can't handle it. I'm drinking lots of coconut water and still don't think it's enough. I'm too nervous, at least so far, to further supplement potassium. The twitching in my legs could definitely be anxiety at this point. I'm so terrified of this potassium deal.

Tomorrow will be 7 days since my third shot. One mistake, at least for me, is that I only waited 3 days between shots 2 and 3. I waited 5 days between 1 and 2. I had a rough time at day 3 but didn't totally crash like I've done now. I know people on this site get way more frequent injections. But there is no way.

I'm trying to figure out whether I should proceed with the third shot, and can expect the potassium issue to improve. Or if I should wait until I hopefully improve more as far as potassium. I'm very afraid that I've triggered something that isn't going to stop now. And this is just not something I can handle. The risk with potassium is breaking me. Not to mention the symptoms.

As far as reflux, I have some opinions. I think the cause was B12 deficiency but then augmented by low iron. I'm not sure about your friends opinion, only bc reflux meds help. They never cured me, but they treated the symptoms, as long as I kept taking the meds.

That's really wonderful that you healed in a week. I improved a lot, enough to stop taking pepsid, which was huge. But not enough to eat normally or lay flat. I've been sitting up to sleep, wearing a neck collar, for over a year. It's horrible. I can't even have sex. I mean we have but it's just not good sitting up so we stopped. Plus the reflux symptoms returned after 4/5 days. So I'm not just getting better. I'm so afraid reflux will be permanent bc of the nerve damage. Also I have moderate to severe abdominal distension (my stomach should be flat). The low potassium is making that a lot worse.

I refused an endoscopy bc there are a lot of people in Reddit who say they got worse. And I have fought *very hard* to avoid taking ppis, which lead to all kinds of bad health outcomes. I cannot risk the endoscopy. I looked tonight and I guess there are non invasive h pylori tests. They just aren't as good. I'm just hoping that I'll get better.

I have another long story with SIBO (that's almost as complicated as this) and tinnitus. I've really been through the ringer. I know many people on this site have been sick for years. I just can't imagine. Yet here I am.

And do you know what might be causing my feet twitching? Is that low potassium, anxiety, or B12 deficiency?

Right now, my throat is also sore from reflux. And my mouth. The edges of my tongue. Another devastating thing is that I was at least able to deal with the bad nights before by taking a product called Reflux Gourmet. It creates a seal over the valve with seaweed. And that's really been my crutch on bad nights for so long. I don't know what I would have done without it. Unfortunately, it is very high in sodium. I've been taking that with low potassium. And that's been scary as hell. I'm trying not to take it tonight.. But since it's been 6 days since my shot, I'm in considerable pain and really need the help.

Well I guess I wrote plenty haha. Thank you again for your kindness. There seem to be a lot of good people on this site, you included.

 

[TinaT]

@Freddd and @linusbert , I would love to get either of your opinions on my question explained above, mainly as to whether I should wait until the low potassium hopefully improves, or go forward tomorrow or soon with shot number four, despite the potassium situation. The low potassium has shot to the top of the list as my highest priority to try to somehow reverse. And get back to the person I was before I started B12 shots just two weeks ago. Thanks very much for any input!

Also is the twitching in my legs, worse than before, probably from the low potassium or just the shots themselves? 🤔 In other words, is that a sign that I need more potassium? Or maybe not?? That's definitely not my only low pain potassium symptom. That's just what didn't go away with all of the coconut water. The worst was extreme tiredness and weakness, plus severe bloating, and full body shaking (but today still better than days 3-5, when my BP was low and heart rate was high, with *intense* twitching and muscle spasms-- tonight BP high so 🤷🏻‍♀️). This is all new with the shots, and I think low potassium is the cause.

 

[linusbert]

@Freddd and @linusbert , I would love to get either of your opinions on my question explained above, mainly as to whether I should wait until the low potassium hopefully improves, or go forward tomorrow or soon with shot number four, despite the potassium situation. The low potassium has shot to the top of the list as my highest priority to try to somehow reverse. And get back to the person I was before I started B12 shots just two weeks ago. Thanks very much for any input!

i really cant tell you much more in that regard, i know not much about b12, i am just writing what i somewhere read in the forum. at this point someone who actually knows this stuff should reply.
seen this?
https://www.quora.com/Has-someone-u...nd-what-were-the-outcomes/answer/Fred-Davis-7

do you get b12 shots IV or SC? if you didnt try yet, SC injection might be a option. its not such a direct bang but distributes the release of medication over a longer time span.

are you sure potassium is your main issue? your diet seams to be plenty in potassium. also you drink lots of coconut water.
what about sodium? what about phosphorus? tried some kefir, joghurt or high phosphor source?
another thing highly related to B12 is folate in any form. and Biotin. high b12 shots should be accompanied by biotin in like 1-10mg doses.
biotin is also in nutritional yeast if you can eat that.
also you should really add thiamin to your high dose potassium. thiamin HCL is very soft and mild. or cocarboxylase. put this into your coconut water, just a little like the amount of pinch of two fingers can grab.

read that? https://forums.phoenixrising.me/thr...-for-methylation-protocols-trial-items.14637/
he not only mentions potassium but also q10 and folate. so either of those might be your problem.


freddd lists a lot of things in his protocol but there are like 4 things he has as mandatory.
b12 adensyl + b12 methyl + methylfolate + carnitine fumarate
did you try carnitine fumarate? (this one is also very poor in vegan diet, needs a lot of things to make especially vitamin C and IRON + more)
the same goes for creatine.
read this
https://forums.phoenixrising.me/threads/the-stages-of-methylation-and-healing.21725/

I can't even have sex. I mean we have but it's just not good sitting up so we stopped.

that does sound weird. can't sex be done in a zillion different positions one of them girl on top?
never heard before that a girl can't enjoy sex as much if she isnt horizontal.
its non of my business, but maybe you guys can find a way. get a fancy tantra book and try to make something fun. have something you both enjoy together and intimate. get creative.
i just can tell you, having a sex adventure with your man is much better than having panic and bad thoughts.

this is much more important in your situation than you might actually believe now. my girl when she was sick she cut back on everything, we didnt even cuddle anymore or watch movies together because she was so obsessed with becoming healthy. we lost YEARS. and we lost each others. thats one of the things i regret the most, the time we actually could have spent some time together, but didnt. she was in the same room but not with me.
i just cant recommend enough, take EVERY day and spend intimate time with your husband. make it a fixed time of like 1-2hours a day where you get intimate and personal. intimate mustn be just curcumber in and out. it can also be watching a movie together, naked, holding each other, stroking and just be near. the emotional intimacy is the important one, not so much the physical. the ability to be able to actual ease into a intimate situation and let go of everything else.
you might regret this later if you dont.
this is IMHO as important as your B12 shots and the other things you do. probably the most important suggestion i gave you so far.

I refused an endoscopy bc there are a lot of people in Reddit who say they got worse. And I have fought *very hard* to avoid taking ppis, which lead to all kinds of bad health outcomes. I cannot risk the endoscopy. I looked tonight and I guess there are non invasive h pylori tests. They just aren't as good. I'm just hoping that I'll get better.

i did it 2 times, actually isnt much a big deal. you can do it without narcotics. its like 5 minutes. i got propofol and dormicum , had a pretty good time afterwards .
whats more a problem for me now is that prolonged fasting period before hand.

but why test? you can treat it directly.
helicobacter pylori , can be treated with:
- high dose vitamin C like 500mg+
- allicin / garlic , h pylori will run for the hills like a vampire (strong antibacterial)
- LACTOBACILLUS REUTERI PYLOPASS® , its like a sponge, the h pylori will attach to the lactobacillus and be excreted

 

[TinaT]

i really cant tell you much more in that regard, i know not much about b12, i am just writing what i somewhere read in the forum. at this point someone who actually knows this stuff should reply.
seen this?
https://www.quora.com/Has-someone-u...nd-what-were-the-outcomes/answer/Fred-Davis-7

do you get b12 shots IV or SC? if you didnt try yet, SC injection might be a option. its not such a direct bang but distributes the release of medication over a longer time span.

are you sure potassium is your main issue? your diet seams to be plenty in potassium. also you drink lots of coconut water.
what about sodium? what about phosphorus? tried some kefir, joghurt or high phosphor source?
another thing highly related to B12 is folate in any form. and Biotin. high b12 shots should be accompanied by biotin in like 1-10mg doses.
biotin is also in nutritional yeast if you can eat that.
also you should really add thiamin to your high dose potassium. thiamin HCL is very soft and mild. or cocarboxylase. put this into your coconut water, just a little like the amount of pinch of two fingers can grab.

read that? https://forums.phoenixrising.me/thr...-for-methylation-protocols-trial-items.14637/
he not only mentions potassium but also q10 and folate. so either of those might be your problem.


freddd lists a lot of things in his protocol but there are like 4 things he has as mandatory.
b12 adensyl + b12 methyl + methylfolate + carnitine fumarate
did you try carnitine fumarate? (this one is also very poor in vegan diet, needs a lot of things to make especially vitamin C and IRON + more)
the same goes for creatine.
read this
https://forums.phoenixrising.me/threads/the-stages-of-methylation-and-healing.21725/


that does sound weird. can't sex be done in a zillion different positions one of them girl on top?
never heard before that a girl can't enjoy sex as much if she isnt horizontal.
its non of my business, but maybe you guys can find a way. get a fancy tantra book and try to make something fun. have something you both enjoy together and intimate. get creative.
i just can tell you, having a sex adventure with your man is much better than having panic and bad thoughts.

this is much more important in your situation than you might actually believe now. my girl when she was sick she cut back on everything, we didnt even cuddle anymore or watch movies together because she was so obsessed with becoming healthy. we lost YEARS. and we lost each others. thats one of the things i regret the most, the time we actually could have spent some time together, but didnt. she was in the same room but not with me.
i just cant recommend enough, take EVERY day and spend intimate time with your husband. make it a fixed time of like 1-2hours a day where you get intimate and personal. intimate mustn be just curcumber in and out. it can also be watching a movie together, naked, holding each other, stroking and just be near. the emotional intimacy is the important one, not so much the physical. the ability to be able to actual ease into a intimate situation and let go of everything else.
you might regret this later if you dont.
this is IMHO as important as your B12 shots and the other things you do. probably the most important suggestion i gave you so far.



i did it 2 times, actually isnt much a big deal. you can do it without narcotics. its like 5 minutes. i got propofol and dormicum , had a pretty good time afterwards .
whats more a problem for me now is that prolonged fasting period before hand.

but why test? you can treat it directly.
helicobacter pylori , can be treated with:
- high dose vitamin C like 500mg+
- allicin / garlic , h pylori will run for the hills like a vampire (strong antibacterial)
- LACTOBACILLUS REUTERI PYLOPASS® , its like a sponge, the h pylori will attach to the lactobacillus and be excreted

I think it's potassium bc I have several symptoms that are listed on Cleveland clinic website as symptoms.(I know they could still be from other things obviously.) But low potassium is also listed on several B12 deficiency society websites as the most important thing to watch. They do recommend other cofactors (not as many as you're suggesting). And I'm trying to add as much as I can tolerate, and one at a time so that I can judge reaction. I haven't responded well to supps so I need to know if something gives me insomnia. Also, last night I was feeling a really strange tiredness, like somehow not what you feel when you just need to sleep. It was scary. So I decided to drink a different brand of coconut water suggested by my nutritionist (has calcium and not as much sugar, can't think of the name right now (still in bed) but it's a powder you can buy on Amazon). Within a few minutes, I was feeling totally alert. And I had been drinking plain water before -- which wasn't helping.

I'm just not at the point where I can add a bunch more. What we need should be in food. I am trying to add a multi vitamin. And then a b complex (actually just received B minus and have ordered folonic acid just in case the methyl has been part of my problem). I also take a little D, sitting or walking in the sun daily, and one cal / mag. And I'm eating a lot of potassium and pumpkin seeds or pumfu daily.

But I stopped all vitamins for a day bc I was having such a bad time. And at least I've slept without pills the last two nights. However -- the coconut water all night is making my throat raw from acid reflux. I can't tolerate calories at night yet I need them to reduce the severity of the symptoms (they don't go away but they improve enough to sleep or get back to sleep with C water).

Sugar is bad for reflux and really any calories within 3 hrs of sleeping will trigger reflux. This is not good bc I just managed to get off pepsid, which was killing me. I think the shot would help reflux. But i don't want to tear down my potassium even more.

As far as why it would be low even though I eat a lot of potassium, my understanding is that B12 basically induces low potassium. The normal daily amount, even if you eat a lot of potassium (which I do), just isn't enough. I can feel that it starts going back down, anytime I am not really conscious of drinking more C water.

I don't even know what creatine is. An amino acid? I eat protein. I don't think I would respond well to more supplements.

Oh another biggie is iron. I'm trying to correct an iron deficiency. And I'm not responding well. Ferrasorb causes nausea and reflux bc of the vit C (acidic). And straight heme iron (three arrows brand) causes nausea and makes constipation caused by potassium worse. I'm planning to try plain non heme iron next. So that's the current experiment -- one thing at a time -- so far nothing works.

As far as sex, that's a long story. But sex was extremely painful. Then I discovered that I have an infection. Not a UTI. Can't remember the name but basically a kind of bacteria that we all have, but in way higher amounts. I think that was caused in part by antacids. But also from lower hormones (perimenopause). So I'm waiting to trying an estrogen "ring," which will reduce the pH, and actually might need to try a couple of types. Strong reaction before. So I'm trying to get through this before that. The infection is localized and causes no other symptoms.

I know we could do other things but I just don't feel like myself. And sitting up on top of it -- I can't relax bc I'm so upset that I need to be sitting up. I mean we were doing it but then this pain started. That was kind of the final straw. IF vitamin B12 or iron are causing my reflux, then the solution shouldn't be too much further away. My husband is an extremely patient guy. It sucks for both of us though. We had really good sex before. I know it's important.

Anesthesia caused my B12 reduction, in my opinion. Anything with nitrous oxide wipes out B12. I think nitrous oxide might be a carrier gas (not sure just reading online and that's when my reflux started, after surgery, then way worse after a two part root canal). Plus again -- if you search "can endoscopy make reflux worse reddit," you will see a LOT of threads where people got worse then didn't get better (as far as reflux). Maybe from nitrous oxide? I don't know what causes it but that's a hard, hard pass from me. I would be forced to go back on high doses of pepsid and I'm sure that was slowly killing me. I'm just not doing it. Also, they are bullshit unless you have cancer. And i know the sequence of events. I have discussed with my very good ENT (retired surgeon, extremely well respected by everyone in medical community). He agrees that I would have a reportable case if it was cancer. I'll take my chances there. This was caused by surgery. I'm not getting more anesthesia unless I'm dying or facing extreme disability.

Long story but I was also bit by a feral cat august 2022, given very harsh unnecessary antibiotics for 3 weeks. Total destruction of my gastro system. This was after surgery and obviously was very harmful immediately. I know all about the microbiome and have spent countless hours trying to remedy that situation. Then in December 2022, I fell during a trail run and hit my head, was Dx with post concussive syndrome. Plus got sick same day and that might have been covid. Plus have been sick numerous times since then, like a lot. May have had covid multiple times. It's been one HELL of a few years.

So i really, really don't want more antibiotics.

I wish to God I could eat a ton of garlic. I've tried several times. Can't do it. Reflux hell. Also can't tolerate vit C. even the buffered kind is a problem. Recently started meaningfully trying to get vit C from food daily. I was low before bc no acidic foods and most sources are acidic. I've been eating more cantaloupe and have always eaten as little broccoli at part of a veggie mix with my dinner. I eat same dinner every night. Very limited options bc of reflux.

I can't do dairy. I'll check your other links later today, when we will be driving to the beach. 🥰 I really hope we enjoy time watching the waves. I really wish my throat would stop hurting though.

Thank you again for all of your suggestions! I'll come back later to check the links. 😊

 

[TinaT]

Also i know this could be long covid basically. That's what I have been assuming most of the year. But this B12 / iron situation really would add up. And again B12 helped reflux to a remarkable degree. I'm hoping the improvement continues. And I never tested positive for covid. I got tested (PCR) a bunch of times the first few times I was sick. I stopped testing with subsequent illness bc I believe the tests are totally bogus if you have a mild case (there are experts who say this). And my cases, if I had covid, were mild. I know that mild covid can lead to long covid and that might be what happened. Again I just think the B12 / iron could cause all of these symptoms. So I'm determined to treat them. With covid, there just really aren't any answers. And I've gone way down that rabbit hole several times. I know it can cause ME. I don't think they understand it. And again B12 and iron both could be the cause and are the first and only things that have helped this entire year and a half.

 

[pamojja]

Also can't tolerate vit C. even the buffered kind is a problem.

There is no acidity left with sodium ascorbates - other forms are magnesium ascorbate, potassium ascorbate, or some others, but less common to find.

A cheap way is to make it oneself. Add half the weight of ascorbic acid powder as bicarbonate, like sodium bicarbonate, to a glass of water, and let it react, till its stops bubbling.

 

[linusbert]

I don't even know what creatine is. An amino acid? I eat protein. I don't think I would respond well to more supplements.

creatine and l-carnitine are two things vegans struggle. both are plenty in meat.
both are required for energy production. though creatine can be tough on the stomach.

Oh another biggie is iron. I'm trying to correct an iron deficiency. And I'm not responding well.

lactoferrin.

IF vitamin B12 or iron are causing my reflux, then the solution shouldn't be too much further away. My husband is an extremely patient guy. It sucks for both of us though. We had really good sex before. I know it's important.

that sucks, it always comes with soo much extra symptoms. its just annoying!

I know we could do other things but I just don't feel like myself.

thats what disease does to you. but you have to fight back to get souvereignity over the sickness. dont let the disease control when you are allowed to cuddle with your partner.

We had really good sex before. I know it's important.

its the intimacy, hasnt to be intercourse.

I wish to God I could eat a ton of garlic. I've tried several times. Can't do it. Reflux hell

same, can't tolerate it anymore either. i use allimax allicin liquid. its tolerable for my stomacht. 1 drop = 10 garlics. recently i had like 100 garlic. well. don't do that.

Anesthesia caused my B12 reduction, in my opinion. Anything with nitrous oxide wipes out B12

probably thats the problem. i cant imagine that having a mechanical device down there will worsen it for more than a few days. i never got NO thankfully.

I wish to God I could eat a ton of garlic. I've tried several times. Can't do it. Reflux hell. Also can't tolerate vit C. even the buffered kind is a problem. Recently started meaningfully trying to get vit C from food daily.

yea i also struggle to find a good source. right now i am trying sodiumascorbate , at least my stomach likes it.
goldkiwi has lots of C, its less acidic than normal kiwi but still it is.
camu camu powder works for some, but i cant do plant extracts at all.
peppers are also rich.

I'll check your other links later today, when we will be driving to the beach. 🥰 I really hope we enjoy time watching the waves. I really wish my throat would stop hurting though.

enjoy your time and the waves, i love the sea and beach. i can watch the waves for hours.

Also i know this could be long covid basically.

doesnt matter to me. long covid for me is just another word for CFS or post viral shit.
i actually believe covid is just another trigger and not the cause of this. any viral disease can cause this. as can do a lot of other things.
i would not even think about long covid... because the treatment is the same as you already do. thou high dose vitamin D or blood levels of 40+ng/ml prevent against this. i would recommend to have your blood levels not below 40ng/ml . better check that next time.
vitamindwiki.com has exhaustive literature regarding this.
D is essential for any repairing to can happen. forget the sun. the sun is garbage in most western countries. also you would need to lie 30 minutes at midday naked in the sun to get the D levels up - without sunscreen!
i was doing this for a year ... still deficient...

 

[TinaT]

There is no acidity left with sodium ascorbates - other forms are magnesium ascorbate, potassium ascorbate, or some others, but less common to find.

A cheap way is to make it oneself. Add half the weight of ascorbic acid powder as bicarbonate, like sodium bicarbonate, to a glass of water, and let it react, till its stops bubbling.

I can't do sodium bc of this potassium problem. I'm not sure exactly what you mean about the other stuff.

But I may try adding my buffered C to my morning (alkaline) smoothie. Thanks for making me think a little more about how to make that happen! Hopefully that will work. I know I need more vitamin C, because that also helps motility.

 

[TinaT]

Probably part of the reason some people can't recover is just our medical system. Like right now, electrolytes make me feel better. But they are really not good with reflux. So, in an ideal world, I would receive IV electrolytes every night until I get through this. That would help. I'm sure.

So the world sucks basically... Especially doctors and insurance companies.

 

[pamojja]

Buffered vitamin C is usually only a mix of minerals with ascorbic acid, therefore the acidity still in there, without the chemical reaction between bicarbonates and ascorbic acid in water to neutalize its pH.

Because of your potassium lack, potassium ascorbate would be the most prevered form of vitamin C to take for you at this time. You get some potassium along with the vitamin C, without any acidity. But I really don't know any commercial source.

However, pH neutral mineral ascorbate can be easily be made by oneself, by mixing ascorbic acid powder with any bicarbonate in water and let it chemically react. Here a source of potassium bicarbonate, and they have also pure asorbic acid: https://purebulk.com/products/potassium-bicarbonate?_pos=2&_sid=acf99abaa&_ss=r

By adding upto half the weight of ascorbic acid as potassium bicarbonate, for example 1/2 gram of ascorbic acid with 1/4 gram mixed in water, the resulting solution is pH neutral.

Edit: Found one product sold as potassium bicarbonate. But its actually not really, but simply both ingredients dry mixed, as in bufferd ascorbates, with the intent to let it fully react with each other to potassium ascorbate, when taken in water. https://www.nutri.com/Shop/Vitamins-and-Minerals/Vitamin-C/Potassium-Ascorbate/

 

[linusbert]

I can't do sodium bc of this potassium problem. I'm not sure exactly what you mean about the other stuff.

the amount of sodium isnt really much, like 1g of powder is 880mg C and 120 sodium. you do not even need 880mg C. 500mg or 200mg are just fine, we are talking like 40mg sodium then. this is a joke.
if you take like 10g vitamin C then the sodium might become a issue.

also i would recommend to take potassium always with a bit of sodium because of the BALANCES. doing one electrolyte single in high dosages wreaks havoc in your whole electrolyte system.
i take sodiumascorbate + a bit potassiumcitrate.

i have high BP... the sodiumascrobate didnt raise it even a bit.

no one said that because B12 increases potassium demands, the body shouldnt get salt anymore.

https://www.drbenlynch.com/methyl-group-methylation-methyl-trapping-what/

 

[Idie]

@Freddd and @linusbert , I would love to get either of your opinions on my question explained above, mainly as to whether I should wait until the low potassium hopefully improves, or go forward tomorrow or soon with shot number four, despite the potassium situation. The low potassium has shot to the top of the list as my highest priority to try to somehow reverse. And get back to the person I was before I started B12 shots just two weeks ago. Thanks very much for any input!

Also is the twitching in my legs, worse than before, probably from the low potassium or just the shots themselves? 🤔 In other words, is that a sign that I need more potassium? Or maybe not?? That's definitely not my only low pain potassium symptom. That's just what didn't go away with all of the coconut water. The worst was extreme tiredness and weakness, plus severe bloating, and full body shaking (but today still better than days 3-5, when my BP was low and heart rate was high, with *intense* twitching and muscle spasms-- tonight BP high so 🤷🏻‍♀️). This is all new with the shots, and I think low potassium is the cause.

Hi Tina—-I note that you have said a couple of times about having to sit up or that your throat hurts.. I had terrible throat pain as well.…had to sit up too, My throat throbs and aches and is connected to the throbbing and burning I get in my hands….I noticed it often happens at the same time….meaning, that when my hands start to throb, my throat begins hurting and throbbing shortly thereafter. I do also recall you talking about acid reflux. Can you describe the sensation in a little more detail?

As to whether you should take the next B12 shot——-when I got my first B-12 shot, I felt great for 24 hours and then I crashed and felt terrible. I was not able to achieve that “feel great” sensation again BUT the more daily shots I took the better I got. You need daily injections to stop the damage from continuing. It is true that you can space them out but healing will be slower and damage can still occur. My personal opinion is that doing too many things at once, makes it difficult to know what is helping. I also found that for me, I kept it very simple in the beginning. I focused on getting my B12 injections and small dose basic b vitamins.

As to potassium—-I was very scared to start it too. What I found was that it made a big difference in my blood pressure and the discomfort of start up or refeeding as it is called and my blood levels were just fine. Here is a recent example——two weeks ago, I had a potassium level drawn. I had been using potassium several times a day. My level was 4.0. Too low for me. I have symptoms at anything below 4.5. I was drinking potassium water throughout the entire day (and week) leading up to the test.
If you have never been told you have kidney problems, you should be fine.

Keep the conversation going as there is much to be learned and you need the support.

 

[pamojja]

I have symptoms at anything below 4.5

Funny, the latter has been my average with relatively high intake. Saw 4 - 5 recommended by a functional med practitioner.

Potassium got about 4.2 g per day from diet, and supplemented an other 1.5 g/d in average the last 13 years.

Dozens times tested. Including even a lone one-time off at >8.5. Is well known that fast blood-draws can destroys red blood cells and thereby falsely raising the results.

 

[linusbert]

Funny, the latter has been my average with relatively high intake. Saw 4 - 5 recommended by a functional med practitioner.



Dozens times tested. Including even a lone one-time off at >8.5. Is well known that fast blood-draws can destroys red blood cells and thereby falsely raising the results.

you guys did take THIAMINE as well? its essential for cells to pick up the potassium, otherwise it floats around in blood and be peed out.
its like B6 for magnesium.

the best way to influence blood electrolytes is with vitamins. those control the levels the body wants to have. otherwise you fight against homeostasis. you keep filling tons of pot in... but the body just wants this 4.5 in blood.

but then again the aldosterone levels also control the salt / potassium in blood. its getting complicated.

 

[pamojja]

you guys did take THIAMINE as well?

I do, all of the vitamins. In average about 550 mg/d of thiamine/benfo through the years.

 

[Idie]

you guys did take THIAMINE as well? its essential for cells to pick up the potassium, otherwise it floats around in blood and be peed out.
its like B6 for magnesium.

the best way to influence blood electrolytes is with vitamins. those control the levels the body wants to have. otherwise you fight against homeostasis. you keep filling tons of pot in... but the body just wants this 4.5 in blood.

but then again the aldosterone levels also control the salt / potassium in blood. its getting complicated.

I have not taken Thiamine other than what is in my low dose B-complex. Probably need to try titration a small amount. If you have read Athene* on this site, she talks about the help she got from Allithiamine but she cautioned that a lower dose is better for her because the refeeding gets out of control with too high a dose. She did say that it helped her with being able to hang on to potassium