Warning about B5

Hi there, it's been a while since I've been on here and truth be told it's been a very rocky road. I feel as though I am stagnant and everything I try seems to end in disaster. One thing I wanted to warn people about is vitamin B5, particularly high dose B5.

My doctor put me on this to help with histamines. Well it turns out in high doses it can actually do the opposite and provoke a histamine reaction. This vitamin is water soluble so it stays in your system for three days. It's been a week now that I've been very symptomatic. This is the longest herx I've had. I tried it orally and got symptoms, then we tried it a few days later with an IV and again the same thing happened. So this has been one of my worst weeks in a long time.

I didn't find much info on vitamin B5 for histamine/MCAS online so I thought I'd post this to add it to the database. I'm not sure what's next for me because all MCAS related things seem to make me flare. He suggested nettle but I'm afraid to try anything new. I'm going to be getting glutathione IVs instead biweekly and I'm hoping those will help in some way.

Sorry I have been absent without notice. I am still alive but not well.

Well I am taking magnesium now (Calm), 120% of the RDA, so hopefully that will help. I had been taking it this whole week though. I'm not sure if it takes a while to build up but hopefully it will help. I don't feel as though I was severely deficient unless Lyme feeds off magnesium (which it may, I only remember it feeds off manganese). My diet is full of foods that are supposed to be good sources of magnesium (almonds, avocado, fish, leafy greens)

So B5 would prevent the strep from being active and this would somehow cause a herx? From immune system over activation or something? This sounds like an autoimmune/inflammatory issue then.

Hi saraeli. I tried low histamine my problem is that I react to a bunch of random foods and some are low histamine while others are high and I don't react at all. So I would react badly to that diet actually. The problem is I react to supplements either very strongly or not at all. I've tried quercetin which I still take, cromolyn which made things worse, ketotifen which made me gain weight. Gaining weight is my main symptom of MCAS but I also get depression, anxiety, panic attacks, insomnia, sometimes muscle pain. I don't have anything new in my house in terms of chemicals circulating or mold exposure and no allergies but this is all not helping my stress levels of course and I know stress ruins everything. I don't think that's the main cause though. It's the supplements and my body's highly reactive state at the moment for whatever reason.

I got treated for SIBO with neomycin and rifaxin or whatever the two are. It didn't help or hurt. Leaky gut I'm sure is an issue to a degree as it is with all of us with got ailments but probiotics and fermented foods are definitely out of the question thanks to histamines. I got nettle today, going to see if that helps. Doc still wants me to try B5 in the future at some point but I am adamantly against it. It has been one week of heck with two l's. I know it's all water retention but it won't go away it just keeps accumulating. This has been a problem for two years now and shows no signs of slowing down, in fact my no foods list seems to eternally grow longer. And now I can't even tolerate vitamins. Some malfunctioning body this is.

I've tried both fasting and intermittent fasting and they both interrupted my sleep horribly. Glutamine converts to glutamate in my body so it just makes things worse. Haven't tried aloe vera lately but my supplement counter could fill a suitcase and more by now so I just can't get another one and probiotics have never really done much. I take digestive enzymes on occasion, not every meal though because I've heard it stops your stomach from producing them. Binders, yes I could be better about taking my binders, I just forget having to time everything so neatly it's hard to make it all work.

I see an LLMD. I'm not sure if you remember that I've been on this forum for a while now (over 1000 posts lol). The water retention has to be histamine related. I read that histamine makes fluid spill between your tissues so the body can't remove it, hence the ever increasing water retention. SIBO we aren't even sure if I had it because my main symptom was these gut issues and constipation. I was just treated on the basis that I might have had it.

Hi saraeli, I would really appreciate if you could recommend some digestive enzymes (non-fungus-derived) and digestive bitters.

GH,

I have heard this before, too, but the last post here is the most clearly stated and understandable in lay terms. Thank you.

There are three things that I have found that are contributing or causing our problems. They each involve the physical modification to the tight junctions in our GI tract. Having one of these affect a person causes problems, the people that are really sick may have two or all three issues.

Absorption in our GI tract is facilitated through the spaces in between the cells in our GI tract. These spaces vary in size. High in the GI tract, these tight junctions are small and the further you go, they get larger, approximately 2.5 times larger. Even the big TJ are in the 8 to 9 microgram range so they are extremely small spaces. It has been shown that particles as big as 220 micrograms have been absorbed through these spaces so significant modification must occur. There are 3 things that I found that alter our TJ's. There are probably more, but these are the three that stand out in the literature and may cause issues.
1. Saturated Fat - this is America's main problem and leads to heart disease, osteoporosis, and cancer. It's mainly due to IGF-1 which comes from animal protein and causes many of our issues. Cold water fish have 2 to 6 times less IGF-1 than non-cold water fish so the type you eat makes a very big difference. My rule of thumb is the smaller the animal, the less IGF-1 you will get from them.
2. Lectins - Lectins can modify TJ to increase absorption. This can be an increased problem for immunocompromised patients. They do not need more oxidative stress and increasing TJ size will increase absorption and increase oxidative stress. This can be a problem if you already have a bacterial issues causing TJ problems.
3. Bacteria/Pathogens - It has been shown that some pathogens can bind the epithelium in our GI tract and directly alter TJ allowing increased absorption. This is the problem many of us have. We can not get better until we alter our microbiome so we can handle the oxidative stress. I'll look into this some more and get more info.

For you, it's probably all three. You see everything as cut and dry. That is not the case. You still eat saturated fat, you probably still eat lectins, you probably have pathogenic issues. At this point, your mineral deficiencies are probably a major issue and you have eaten so many fish that metal toxicity is a major concern.

I'm not sure why I even post sometimes but Avocados have 3.1 grams of saturated fat per cup and almonds have 1.1 grams of saturated fat per ounce. Both are considered good, healthy foods for most people and low in saturated fat. Because of your health issues, you aren't most people. One normal filet (154g) of whitefish has 1.8 grams of saturated fat.

Almonds have 1280mg of phytic acid per 100g and do have lectins. Unless you blanch your almonds to remove the skin, you are eating lectins.

I'm not sure why you said I called you a liar, that is not the case. I stated you most likely had issues with all three things I mentioned. If you are sick, you have problems. I was simply stating my opinion to what your problems could be originating from. It's a very complex issue that no one knows the entirety of what is going on. I will concede that. I don't know what is wrong with you but I do know the procedure it takes to get better. It's like trying to treat mycobacterium without methylating your T cells or trying to detox without molybdenum. Those treatments won't work. There are certain things you must do to get better. I wish you well.

Allergies to corn involve a 54 kDa protein. It just so happens that Pseudomonas aeruginosa codes for a 54 kDa protein. You think that is a coincidence? I do not. Soybeans are high in lectins and should cause you problems as long as you have SIBO. I don't have near enough information about your condition to even begin to think about a treatment regiment.

JB: You know Georgia Hunter is only trying to help. But, I can imagine you're incredibly frustrated, because you have so many dietary restrictions that have been forced upon you. I'm sure you'd prefer to be able to eat a wider variety of foods. I go through periods of not being on the forum for a while, so I can tend to forget peoples' histories and what it is with which they're dealing. Since you mentioned fruits and vegetables, how do you do with low-sugar fruits and non-starchy vegetables? A friend of mine roasts certain vegetables that I'd otherwise find unappetizing and not eat. I've been thinking about buying a cheap air fryer, too, in hopes of expanding my food choices. Anyway, it's good to "see" you again, though I wish you didn't have any issues that necessitated your being active on the forum again.

Georgia: Your knowledge base is unlike anything I can imagine. I'm not even smart enough to know how much you know (or, how much I don't know). I'm aware that you've been at this for many years with countless hours of self-study and self-experimentation -- this is in addition to the many years of academic study and ongoing professional training and clinical experience. Whenever I see a post by you, I always read it. It may be over my head...but, I still read it. Previously, we discussed your desire to write a book on the topic, but that it may not be feasible, for several reasons. Thus, you're sorta stuck between a rock and a hard place, because you have a lot of hard-won knowledge and many things you want to share require several steps back just to frame the discussion, provide additional background and context, and then mention the thing you want to share. I often get frustrated on here, too, though I don't have as much valuable information to share as you do. So, for whatever it's worth, I hope you don't stop posting. Even if something doesn't seem to help someone now (though, it might and you may never know), each of your posts remain for future legions of people to find.

We all want to be helped and to help others. Sometimes, it's easier said than done. We're only human and usually have only the best of intentions.

Finally, I'm constantly frustrated with what the "science" reports versus how I feel and what my labs reflect. I wonder if anyone has any thoughts on the following articles?

Skeptical of Medical Science Reports?
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4572812

1,500 Scientists Lift the Lid on Reproducibility
https://www.nature.com/news/1-500-scientists-lift-the-lid-on-reproducibility-1.19970