The 12th Invest in ME Research Conference June, 2017, Part 2
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Best and safest mold binders if you also have MCAS?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Gingergrrl, Jun 27, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was not sure whether to put this in MCAS vs. Mold/Biotoxin forum so hopefully both sets of people will see it.

    I have been blessed (heavy sarcasm) with both severe MCAS reactions to food and meds as well as 2+ years of severe mold exposure.

    Long story short, I have now seen an MCAS specialist (allergy/immunology but Masto stuff is his specialty) plus a top mold specialist which was not easy to pull off being this ill but I did it.

    The mold dr wants me (in an ideal world) to take binders such as activated charcoal, CSM, Bentonite Clay or Chlorella plus try nebulized glutathione.

    However b/c of my MCAS reactions which at their worst led me to a five day hospitalization, she has not given me permission to start any binders yet until she speaks with MCAS doctor and I tried all week to coordinate this but no luck so far.

    In any case, my question is... Is there anyone on PR who at any point was in my situation and if so which mold/mycotoxin binders did you find to be the best and SAFEST given your MCAS reactions.

    My mold Dr's concern which I share is that you must take binders 90 min from all other meds (in both directions) so three hours total. If you have an MCAS reaction within that window and took Benadryl or Zyrtec or any oral med, it will be ineffective.

    I know I can take a shot or even use EpiPen in a true emergency but for many reasons this is not a reasonable ongoing daily solution.

    I also have five different sets of meds that I take so I can't even figure out where to take the binder (logistically) but that is a separate issue. It is supposed to be twice a day 12 hrs apart and we made a spreadsheet but got no where!

    I welcome any thoughts on this and hoping I am not the only one with both MCAS and severe mold exposure here. I have posted on some Masto boards too but the people there were unable to take mold binders for this reason which was my fear.

    If I really took them twice, there would be a six hour window each day that the MCAS meds would be ineffective which scares me.

    Thanks for reading!
     
    Last edited: Jun 27, 2015
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  2. sscobalt93

    sscobalt93 Senior Member

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    Modifilan is a good product that comes to mind.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    I have never heard of this one and it is not on the list of binders that my doctor uses. She really wanted me to start with the activated charcoal.

    What is Modifilan and do you know anyone with MCAS who has used it without getting a reaction?

    Thanks!
     
    Last edited: Jun 28, 2015
  4. Revel

    Revel Senior Member

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  5. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Revel and I googled it and it looks like it is more for tx of heavy metals like you said vs. Stachybotrys or black mold.

    Am still curious to hear if anyone on PR with MCAS has also used mold binders like charcoal or CSM.

    Thanks again to all.
     
  6. sscobalt93

    sscobalt93 Senior Member

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    http://www.toxic-black-mold-syndrome.com/black-mold-remedies.html

    I have also read testimonials about it. Some guy was sick in his apartment from mold and this is what cured him.

    You have to think if it can bind to heavy metals mold should stand a chance.

    Even systemic enzymes can clean mold out of the body.

    They may not be the direct line of treatment, but they can surely help get the process moving.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @sscobalt93 and I am familiar with that site.

    Was just curious if anyone on PR with MCAS has taken mold binders while actively treating their MCAS at the same time but my guess so far is no. Just thought I would pose the question anyway.

    Until my doctors speak I guess starting binders is on hold. At present for the MCAS I take: Zyrtec, Gastrochrom, Ketotefin, Klonipin, Daosin, Neuro Protek, Quercetin, Cortef and Chromolyn by nebulizer.

    These are in different groupings and I can't risk the binder removing them from my body or I can't eat! Plus I don't want to return to the level of reactions that I was having prior to the hospital and then not be able to take the meds (meaning having them be ineffective) b/c of the binder.

    I feel not quite smart enough to solve this but my husband and mold doctor couldn't either so I will just wait until my two docs speak and hope it really happens.

    @Dufresne @Ifish @Forebearance do you have any ideas?
     
  8. justy

    justy Donate Advocate Demonstrate

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    my immunologist told me it was important not to antagonise my mastc ells for a good while - in other words not to take any meds beyond ones for mast cells and asthma because they need to get quietened down for a while first - the more you react then the more reactions yu get as they get sensitised and triggered even more.

    That being said I decided to go for the Glutathione infusions and so far this has been successful - no reactions to it or high dose vit C infusions. although the past few days I have been more reactive in terms of itching I think the vit c iV is reducing my throat swelling reactions.

    I guess what I am saying is that you may need to come at the mold form a different direction - getting your system stronger first and less reactive in other ways. For me the Lyme and co have caused the MCAS, but because of the MCAS I cant treat the Lyme as I cant tolerate the drugs so we are working on strengthening my immune system and detox systems because they are not coping and this might inadvertently make me be able to eventually toerate the abx for Lyme (or so the thinking goes...)

    Its a long and slow process and I wish you luck. Personally I wouldn't take charcoal because I need my H1 AND H2 blockers in my bloodstream ALL THE TIME.
     
  9. Dufresne

    Dufresne almost there...

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    @Gingergrrl It depends how often you need to take your mast cell stabilizers. I take whatever herbs, drugs and supplements I need first thing in the morning. Then I wait about forty minutes to take my binder, then another 40 minutes before I eat. I also won't take therapeutics within 3.5 hours after a binder.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @justy and this was my concern too and I think you are the first person besides my mold doctor who fully grasps it which is why she was so frustrated by the situation b/c she knew how desperately I need to start the mold binders but kept saying, "First do no harm" and that she couldn't let me start even charcoal w/o talking to my new MCAS doctor.

    It feels like an unsolvable dilemma but I think moving to mold free environment and focusing on MCAS and immune system might have to come first and not try the binders for a while as much as I would like to start them now. Binding the MCAS stuff out of my system and also trying to eat is too scary a prospect considering what I just went through unless there is a way to do it that I am just not grasping?
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Dufresne thanks for replying and I cannot remember, do you have MCAS in addition to biotoxin/mold issues?

    If I could take all the meds in the morning and then eat shortly after I could make this work (maybe?) but I have five sets or groupings of meds that I take starting in the morning and finishing late at night.

    The H1 and H2 blockers plus the mast cell stabilizers (three of them) need to be consistently in my body in order for me to eat and not have reactions and the ability to eat now compared to back in April when I was hospitalized is miraculous and I can't risk messing it up.

    But my body is so messed up from breathing in toxic mold (19 kinds but worst was Stacybotris) that my breathing and pulmonary tests really bad and these binders could be of great help so I am really torn, especially re: the extended release meds which I can't mess up.

    The only thing we could think of was to move my second Cortef dose from 3 PM to 2 PM and then take the charcoal at 3:30 PM and set an alarm and take second dose at 3:30 AM but thus seems risky if I have a bad reaction in the middle of the night? The Masto boards said not to do it but I want the opportunity to try the charcoal, CSM etc and get this mold out of my system.

    Everything has risks and I want to move forward but feel (for now) this one has no good answer.
     
  12. Ema

    Ema Senior Member

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    Once the meds are in your bloodstream, there are no worries about binding. The binding happens in your gut with bile and then the bound complexes are eliminated in the feces.

    So they aren't running through your bloodstream scavenging life saving histamine blockers in any way.

    I think waiting 3.5 hours is way overkill. Shoemaker says most meds at 60 min; thyroid takes longer but you can avoid that problem with sublingual administration.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @Dufresne sorry I was also confused what you meant by "therapeutics?" Versus others meds/drugs when you said you waited 3.5 hrs to take those. Can you explain? Thanks!
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Hi @Ema, I know we discussed this a bit but I think I am still not grasping the concept and can only go by what my new mold doctor advised which sounds like it differs a bit from Shoemakers time frames.

    She was explicit re: 90 min in both directions (3 hrs total) for both food and meds. I know many people take their food & meds together but I cannot ever do this b/c of MCAS so I have a very strict protocol now with which meds I take pre and post food (minus adding binders into the mix.)

    I also don't understand the sublingual part. Doesn't a sublingual med still go through the stomach or am I totally wrong in that? Regardless my current meds are not sublingual and Gastrochrom is a liquid, and many of the others are time released pills that must be swallowed whole.

    I am honestly not worried about my non MCAS meds like thyroid, atenolol etc, but concerned about the MCAS ones like my doctors were. Even if it were 60 min vs 90, it's still a two hour window vs. Three hour window unless there is something I am just not grasping?
     
  15. Mary

    Mary Senior Member

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    @Gingergrrl - That is a tricky situation. I was wondering if Modifilan or brown seaweed act the same as charcoal. As you know, charcoal pretty much absorbs everything ( toxins, nutrients, drugs, etc.) so you can't take a chance with it because it would quite likely interfere with your MCA meds.

    But I'm wondering if the brown seaweed products act in the same manner as charcoal, absorbing both toxins and nutrients. I doubt that it does - seaweed is a food, and to my knowledge it doesn't interfere with absorption like charcoal does. So maybe you could tolerate a brown seaweed product - something you might ask your doctor about.

    I hope someone on this board has some answers for you!
     
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  16. Sushi

    Sushi Senior Member Albuquerque

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    No.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Mary thanks and I do not know the answer b/c the mold doctor I saw felt the charcoal would be the most benign for me of all the things she prescribes but then felt too dangerous for me to try it right now.

    I am the first patient she has had with this severe MCAS so she didn't want to risk it. She adequately scared me and as I have now inquired on multiple Masto boards, I am getting the same responses.

    I think if I had pure ME (if there is such a thing?) or pure mold exposure this would be much easier than all these issues stacked on top of each other. I think my focus for now must be moving to the non moldy apt and on the MCAS treatments and pulmonary testing and if it means postponing the binders a bit, it is okay. Just a little frustrating!
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi thanks for explaining SL meds but if non of my meds are in a SL form, would it apply to them? Most are capsules, liquids, or time released and we got them working where I can now eat two meals per day and up from 97 lbs to 103 lbs and have never yet needed EpiPen so am very afraid to mess with this!
     
  19. Ema

    Ema Senior Member

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    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.

    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.

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

    Gingergrrl Senior Member

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    Thanks @Ema and will reply later b/c am feeling really light headed/vertigo and slight tachycardia and I think the chromolyn by nebulizer just does not agree with me and have tried it four times to really give it a fair try. It makes my lungs feel tighter and headache too.

    I have not added anything else so this has to be the culprit. I want to ask you some more questions when I feel better. I'm sure you can hardly wait... :D
     

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