Best and safest mold binders if you also have MCAS?

[Gingergrrl]

@Ema

It might also be possible to get some meds compounded as suppositories for rectal administration. This is also a highly effective route that bypasses the gut.

Sadly after having to replace everything we own from mold and having terrible insurance, I can't afford to try to replace all my meds too right now.

Binders can only bind meds in the gut. So once the other meds are in your system, the binders will not have an effect on them.

Further they only bind to certain charged particles to form complexes that are then excreted. Most meds are exempt from this though we play it safe by adding in a buffer window anyway. But if reducing that window even by an hour allows you to get the doses in, I'd say it's worth at least trying.

How would I know which meds and supplements have those certain particles that are charged that way? I don't even think my doctor had that info and didn't want to risk it with my mast cell meds. I feel like I would just be guessing and it could be fine or it could be disastrous!

There are no hard and fast rules. Much depends on your own personal intestinal transit speed.

How would someone know their intestinal speed? I know I am a very slow metabolizer of meds in the liver but I don't know how this relates to the intestines or transit speed?

 

[Valentijn]

No.

Actually sublingual meds are also getting absorbed in the GI tract. In the case of "sublingual" B12, for example, it's virtually incapable of being absorbed in the mouth at all. And even where there is absorption, more of it probably going to be trickling down the throat with saliva.

 

[Dufresne]

I think liquids are absorbed pretty quickly. I feel my tinctures within a half hour, everything else about 40 minutes to an hour when taken on an empty stomach. So I dose with a binder when I feel everything has been absorbed, then I always wait 40 minutes for the binder to work its way into position in the small intestine.

I do wonder how long some of these binders stick around there. But I figure if I take a binder at 9AM, eat at 9:45, and don't take meds again until 12:30, I should be absorbing what I need. The other thing is I eat 4-5 times per day and only bind 2-3 times so there's always a chance to take meds far away from a binder. For me the only situation that's really inconvenient is the morning because I want to get my meds in as well as bind that nighttime detox bile with my first fatty meal of the day.

I'll just echo that you don't have to worry about binders outside of the small intestine. It's true that some things are digested further down the tract but hopefully you can use faster break down options and/or time them properly.

The mast cell stuff is interesting and is my next experiment. I sensitize to anything I put into my system in any kind of quantity, including epsom salt from a bath or sunscreen put on the skin. Getting out of a moldy house has helped me the most in this regard. It's the only reason I'm able to take drugs and herbs now and receive their intended effect. I was unable to treat anything for over three years. I have EMF sensitivity which some believe is a mast cell disorder, same with MCS, and the food sensitivities. Mold avoidance definitely helps with my sensitivities (whatever their cause), but I've bought some quercetin and such to see if I notice a change. I took some Nalcrom many years ago and didn't notice any benefit.

 

[Ema]

Actually sublingual meds are also getting absorbed in the GI tract. In the case of "sublingual" B12, for example, it's virtually incapable of being absorbed in the mouth at all. And even where there is absorption, more of it probably going to be trickling down the throat with saliva.

But then that's not really sublingual administration of B12. That's more time released oral administration using the mouth to slow things down...

Which is not to say that some part of sublingual meds don't end up being orally absorbed. You just hope the majority are transmucosal instead.

 

[Forebearance]

Hi @Gingergrrl!

I'm so glad to hear that you've been able to see both doctors by now! That is a great accomplishment!

I don't have MCAS, as far as I know, but I am really sensitive to binders and I wouldn't be able to tolerate charcoal or some of the other binders your doc listed. They pull out too many vitamins and minerals from me.

So I take a very gentle binder: soluble fiber. I take Benefiber or citrus pectin. An even gentler option would be to eat a bowl of oatmeal! I knew one person with Lyme whose doctor told her to just eat an apple every day. That would also be a source of soluble fiber.

I also take many doses of vitamins throughout the day, so I just take one dose of binder a day, in the middle of the afternoon. That way it avoids my morning and evening supplements.

But I agree with justy and your idea to concentrate on getting your mast cells to calm down first. Being out of your moldy home should help with that, hopefully.

I am so glad to hear reports of how things are going with you!
Love, Fore

 

[Gingergrrl]

@Dufresne

The other thing is I eat 4-5 times per day and only bind 2-3 times so there's always a chance to take meds far away from a binder. For me the only situation that's really inconvenient is the morning because I want to get my meds in as well as bind that nighttime detox bile with my first fatty meal of the day.

Right now I eat twice a day if it is a good day MCAS wise, and once a day if not, but I take a minimum of five groupings of meds which is why I don't have that window. I don't understand what you mean re: detoxing the fatty meal? Isn't the point of the binder to detox the mold when your stomach is totally empty?

I'll just echo that you don't have to worry about binders outside of the small intestine. It's true that some things are digested further down the tract but hopefully you can use faster break down options and/or time them properly.

I apologize that I don't understand this paragraph at all! What do you mean re: using faster break down options and is this something within my control? My fear besides having all the pre-meal meds not work is that if I get a severe MCAS reaction that the post meds won't work. I have emergency options but the goal is to not worsen the status of my mast cell disease or go backwards with my progress in this area.

Getting out of a moldy house has helped me the most in this regard. It's the only reason I'm able to take drugs and herbs now and receive their intended effect. I was unable to treat anything for over three years.

This is actually my biggest hope as well and if all goes well I will move into new mold free apt on Weds and we are meeting a potential caregiver tomorrow. I am hoping being in a new environment will allow me to tolerate and benefit from treatments that did not work over the past two years when I was unknowingly breathing in massive quantities of toxic mold.

Mold avoidance definitely helps with my sensitivities (whatever their cause), but I've bought some quercetin and such to see if I notice a change. I took some Nalcrom many years ago and didn't notice any benefit.

I take 2000 mg of Quercetin per day plus whatever is in Neuro Protek which I take 2x/day with a total of seven MCAS meds that are allowing me to eat. As of this morning, I added the second dose of Ketotifen (the AM dose) since I tolerate the PM dose with no issues. It may make me really sedated but that is okay at this point!

My goal is to eliminate the Gastrochrom which upsets my stomach and is extremely expensive. I have not tried Nalcrom but I tried chromolyn by nebulizer 4x but just cannot tolerate it. Each time it gave me bad side effects and yesterday it gave me vertigo so I am done with it.

 

[Gingergrrl]

Hi Fore,

I'm so glad to hear that you've been able to see both doctors by now! That is a great accomplishment!

Thank you and I appreciate you saying that! It has been a lot of effort to coordinate and get there but I am hoping it will pay off even if it is a very slow process.

I don't have MCAS, as far as I know, but I am really sensitive to binders and I wouldn't be able to tolerate charcoal or some of the other binders your doc listed. They pull out too many vitamins and minerals from me.

You would definitely know it if you had MCAS and I did not have it myself until a few mos ago and we suspect it was my immune systems final reaction to no longer being able to fight the mold.

When you say you are really sensitive to binders, what did you experience? How did you know they were pulling vitamins and minerals from you? I am still brand new to this and trying to learn as much as I can.

So I take a very gentle binder: soluble fiber. I take Benefiber or citrus pectin. An even gentler option would be to eat a bowl of oatmeal! I knew one person with Lyme whose doctor told her to just eat an apple every day. That would also be a source of soluble fiber.

Sorry for all my dumb questions but is fiber the same thing as a binder like charcoal? I cannot eat anything citrus due to the histamine content but I can eat apple without the skin if it is cooked or boiled. I can eat plain puffed rice cereal but have not tried oats yet. Am still pretty limited in my food choices.

I also take many doses of vitamins throughout the day, so I just take one dose of binder a day, in the middle of the afternoon. That way it avoids my morning and evening supplements.

My mold dr ultimately wants me to take several binders 2x/day with doses 12 hrs apart. But I will start with just one dose and build up and it seems like it will have to be in the middle if the night to be far enough away from all the food and meds. If I did not have the MCAS schedule of meds this would be easy! But I have been able to eat without ANA reactions since end of May so am terrified to mess this up!

But I agree with justy and your idea to concentrate on getting your mast cells to calm down first. Being out of your moldy home should help with that, hopefully.

I am so glad to hear reports of how things are going with you!
Love, Fore

Thank you so much on all counts! I think my plan is to streamline my MCAS regime, move to the apt and continue increasing my nebulized magnesium before I do anything else. I just get very impatient and want to do everything at once!

Hope you are doing well (@Dufresne & @Forebearance) and all in this thread.

 

[Gingergrrl]

@Forebearance I just googled your screen name and it says that it means "Patient self control, restraint and tolerance" which right now are all things that I lack. I don't lack tolerance toward others (just to clarify!) but I lack all of these things in regard to myself and the illness process.

 

[Dufresne]

@Dufresne I don't understand what you mean re: detoxing the fatty meal? Isn't the point of the binder to detox the mold when your stomach is totally empty?
.

Binders are thought to work on the toxins coming out of the liver in bile. I figure if the binder is in place in the small intestine when the bile is released then you've the best chance to mop them up and eliminate them. Fat is one of the things that stimulates bile secretion; so I take a binder and then consume a fatty meal 40 minutes later for maximal bile secretion. You don't want to take your binder at the same time as you eat, at least not cholestyramine.

I think activated charcoal is the worst of the bunch for soaking up nutrients.

 

[Sushi]

Isn't the point of the binder to detox the mold when your stomach is totally empty?

A binder is like a glue that "catches" things, holds onto them and carries them out of the body as waste. It doesn't "detox" as such.

 

[Gingergrrl]

A binder is like a glue that "catches" things, holds onto them and carries them out of the body as waste. It doesn't "detox" as such.

So wouldn't the binder catch the mold like a glue (vs. catch the food or meds) if your stomach is empty? It seems like my mold doctor explained it to me very differently than what others are doing! I have no idea who is right but she said charcoal should be 90 min from food and meds in both directions for it to catch or bind to the mold or other toxins vs. other things in your GI track?

 

[justy]

Hi Ginger, considering how sikc you have been in recent months, if it were me I wouldn't do anything for some time now that the MCAS is stabilising a bit. Surely this and being able to eat are your no 1 goals at the moment - oh and moving into a new apartment (I hope you have had it tested for mold?)

This is a lot for a very sick person to be getting on with, without worrying about treating the mold. As ive said before I cant even think about treating my Lyme and co infections because im still not stable and too ill and too reactive, and im not as ill or reactive as you.

Really so happy to hear you saw an MCAS expert - who did you see? Oh and very good luck with the move.

 

[Gingergrrl]

I think activated charcoal is the worst of the bunch for soaking up nutrients.

@Dufresne But isn't it supposed to glue or bind itself to the mold and toxins (versus the nutrients from food or supps?) My understanding is that you do not want the charcoal to soak up nutrients vs. bind to the mold. I feel like I am missing something here or else different docs are just doing different things?

 

[Gingergrrl]

@justy

Hi Ginger, considering how sikc you have been in recent months, if it were me I wouldn't do anything for some time now that the MCAS is stabilising a bit. Surely this and being able to eat are your no 1 goals at the moment - oh and moving into a new apartment (I hope you have had it tested for mold?)

I really do agree with you but am just impatient to get started b/c I found such a good mold doctor. But I do agree with you and wanted you to know that! And yes we tested the new apt for mold and it was completely clear. We also got rid of all of our belongings. It is strange b/c we got married in 2012 and didn't know what to register for b/c we both had our own sets of belongings. Now three years later, we have nothing and had to get rid of all of our wedding gifts and everything we owned b/c everything was contaminated with mycotoxins beyond the point of cleaning. I wish there was a way to register for gifts for mold loss instead of a wedding LOL.

This is a lot for a very sick person to be getting on with, without worrying about treating the mold. As ive said before I cant even think about treating my Lyme and co infections because im still not stable and too ill and too reactive, and im not as ill or reactive as you.

I understand and you are right. I just want to start getting the mold out of my body b/c my breathing is so poor and if these binders can help, I want to do it. I am very frustrated and impatient right now (not with you or anyone from this thread- just the situation.)

Really so happy to hear you saw an MCAS expert - who did you see? Oh and very good luck with the move.

I will PM you the doctors name and decided not to post any of my new docs names on the public board but happy to share them privately. And thank you for the good wishes.

 

[Forebearance]

When you say you are really sensitive to binders, what did you experience? How did you know they were pulling vitamins and minerals from you? I am still brand new to this and trying to learn as much as I can.

Sorry for all my dumb questions but is fiber the same thing as a binder like charcoal? .

Soluble fiber isn't exactly like charcoal, as far as I know. I think different binders might work in slightly different ways. Some binders, like CSM, phytosterols, and soluble fiber, bind mostly to fat in your intestines. Mold toxins are fat-soluble. So when your liver makes bile and your pancreas squirts it into your intestines, there are some mold toxins included in the bile. Because the body of a mold-poisoned person is trying to get rid of the mold toxins.

As the bile and food pass through your intestines, the mold toxins have a tendency to get re-absorbed back into your bloodstream. But the fat-binding binders will latch onto some of the fat-toxin combo and escort it out.

This is great, but some vitamins are also fat soluble and if you overdo the binders, you can become low on some vitamins. Some people take extra vitamin A, C and E when taking binders. Dr. Shoemaker suggests eating more natural fats when doing binders. It helps keep you from getting constipated, too.

Everyone is different, and I happen to need tons of calcium and other minerals. (Osteoporosis runs in my family big-time.) I figured out that the stronger binders seem to be removing calcium and other minerals along with the mold toxins, in my body. Most people don't notice this. I already take about the max amount of calcium that I can.

I started by trying phytosterols, which were a bit too strong for me. Then I tried CSM, which was way too strong for me. By too strong, what I mean is that I could feel my teeth getting weak. I didn't want to risk losing any teeth. (a few people have had that happen when taking CSM).

Some people like to do coffee enemas to help remove mold toxins. I'm sure there are whole threads on this! I have not tried them myself.

Ha ha! Thanks for googling my nickname. When I signed up I wanted to be "Patience" but somebody else already had that nickname, so I looked for a synonym. It sure takes a lot of patience and forebearance to handle these dumb illnesses!

If you want to help the mold detoxing process in a non-binder way, one thing you could do is to go somewhere pristine and just breathe the fresh air. Tops of mountains and hills are good for this. Or beaches.

 

[Gingergrrl]

Has anyone used carrot juice as a detox treatment for mold? I guess it can increase the alkalinity of your blood so it doesn't feed the mold? Is there any truth to this or just nonsense?

I actually tolerate raw carrots with all my MCAS issues so I believe I could try this one now or soon?

 

[Forebearance]

I don't know. I haven't tried carrot juice for detoxing mold toxins. Let us know what happens if you try it!

 

[Gingergrrl]

I don't know. I haven't tried carrot juice for detoxing mold toxins. Let us know what happens if you try it!

Thanks and I will. We are very close to moving into new apt and once we buy new kitchen stuff & blender, I may try this. I think it is from a book called "The Mold Within" that my husband is reading but I could be wrong and he reads a lot of stuff!

 

[Forebearance]

Just one note, @Gingergrrl,
It is wise to be cautious about buying new stuff until you see how the new place grabs you.
I would suggest starting out with the cheapest essential items. You can always add more stuff later if the place agrees with you.

 

[Gingergrrl]

Just one note, @Gingergrrl,
It is wise to be cautious about buying new stuff until you see how the new place grabs you.
I would suggest starting out with the cheapest essential items. You can always add more stuff later if the place agrees with you.

My husband signed a year lease and I don't think we could afford to move again and the housing market here is very tight and a miracle we found anything thus fast. But we are definitely buying cheap and minimal stuff.