Diagnosing mold toxicity

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Manzanita2
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Date Joined May 2017
Total Posts : 92
   Posted 10/3/2017 6:00 PM (GMT -7)   
My LLMD wants me to test for mold toxicity. Apparently some test I had shows I'm susceptible to it. I feel skeptical though because my symptoms don't line up with what I've read about it, although I'm not sure if I've read the most accurate info. I live in the desert and my house is dry as a bone. Also, I recently visited my mother back east and her house smells musty and I could even see mold in some places. It didn't bother me a bit. In fact I felt relatively good when I was there.

I would go ahead and test for it anyway but they want almost $1000 for this testing, which also involves two sessions of IV glutathione, not included in that price. I have no idea how much extra that is. I'm afraid to ask. Regardless, I simply cannot afford this testing.

I know some of you here have mold issues so I thought I'd ask about this. I'm wondering, what kind of treatments are there for mold toxicity? Aside from haviing mold removed from your surroundings, of course. I've heard there's something called cholestyramine, I think, but I believe it's prescription only? If so, are there any natural treatments for mold I could try to see if any of my symptoms improve? Are there any less expensive types of testing for mold toxicity? Also, I'm curious what symptoms any of you might be having that you attribute to mold toxicity.

I've read some pretty crazy scenarios regarding mold, where some people had to get rid of all their belongs and even sell their home or pay a fortune to have it treated. I can't even afford the testing let alone replacing all my belongings. Is this something that happens often or only in severe cases?

Thanks for any input you can offer.

Pirouette
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   Posted 10/3/2017 10:26 PM (GMT -7)   
Hi Manzanita2 -

Sounds like your LLMD gave you an HLA test, which helps determine mold sensitivity. There is definitely mold in the desert - a dangerous kind although I don't remember what it is and you would definitely know if you had this but there are other lesser molds.

There are so many different types of mold. It's a little odd that if you have sensitivities that you didn't react at your mother's place. Survivingmold.com is a great website for mold and tx info. I think they have a newsletter you can sign up for and Dr. Shoemaker, its founder, used to offer- might still offer - consulting over the phone but I'm not sure of cost.

Yes - the Rx cholestyramine is commonly prescribed for mold detox. I am using it just as a general GI binder and it has do so much for me. I am also living in a moldy environment, which I can't control, so it helps keep things flushed out. I highly recommend the pure cholestyramine, which is expensive - you can only get it through a compounding pharmacist.

You'd probably start with a pretty low dose and a $185-ish one-month supply would probably last you about two months. So that seems considerably less expensive than the testing and glutathione tx. And might be more beneficial.

You could try regular GI binders but they're not as effective for mold. And I'm not sure what other tx there are for you to try, particularly if you're asymptomatic. Hopefully others will chime in with suggestions.

I have also read the extreme cases of mold infestation and you would know if that were your issue--I wouldn't worry about that. Those people are generally very ill and symptomatic. Although yes, mold can grow on surfaces and spores can travel through the air and it's very difficult to clean out of everything. Some mold survives clothes washing, and cooking, etc. Crazy stuff.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

Manzanita2
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Date Joined May 2017
Total Posts : 92
   Posted 10/4/2017 6:05 AM (GMT -7)   
Thanks much for answering, Pirouette. I did some more googling and then looked over my test results again. Yes, it was the HLA test and I am mold susceptible and multi susceptible according to it.

I've lived in some moldy places in my lifetime (Florida, southeast Texas) but never had any symptoms like they describe until after I was bitten by a tick. The symptoms seem the same as Lyme disease from what I've read. How would one know the difference?

The mold thing has been a rabbit hole I just don't want to go down but I guess I'm going to have to explore it. It's too bad the CSM is prescription since I'd have to go through the LLMD to get it. They will want me to do all the testing I described first. They are two hours away and I have zero hours of sick time at work so getting there for multiple glutathione IVs is going to be hard, even if I can scrape up the money. We're going to be moving soon so maybe I can get whatever new house we buy tested to make sure it's mold-free. Then perhaps taking more easily accessible binders can help? Activated charcoal? Diatomaceous earth? I'll have to read up more.

Sigh. This is just what I need. shakehead

Lapis_29
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Date Joined Sep 2017
Total Posts : 509
   Posted 10/4/2017 6:29 AM (GMT -7)   
Manzanita2 said...
Also, I recently visited my mother back east and her house smells musty and I could even see mold in some places. It didn't bother me a bit. In fact I felt relatively good when I was there.

I would go ahead and test for it anyway but they want almost $1000 for this testing,


as someone with SEVERE mold allergy...no. dont do it. if you can stand to live in a house with visible mold and be fine, YOU DONT HAVE MOLD TOXICITY!

pretty much guaranteed. your doc doesn't sound too bright to be frank.

these Docs will drain every last dollar from your bank account if you let them. Use common sense and save you money for ABX or whatever else you are doing.

Lapis_29
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Date Joined Sep 2017
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   Posted 10/4/2017 6:44 AM (GMT -7)   
Manzanita2 said...
Then perhaps taking more easily accessible binders can help? Activated charcoal? Diatomaceous earth? I'll have to read up more.

Sigh. This is just what I need. shakehead


modified citrus pectin does the same thing colestyramine does, and its super cheap.

Manzanita2
Regular Member


Date Joined May 2017
Total Posts : 92
   Posted 10/4/2017 12:35 PM (GMT -7)   
Thanks Lapis29!

Actually this doc has done several things that had me wondering from the get-go. And they were pushing the mold toxicity diagnosis at me from the very first visit, before I was tested for anything. To be honest, I suspect a mold toxicity diagnosis is their backup plan to empty your wallet if you don't test positive for Lyme disease. Which I didn't. I had an equivocal IFA and only bands 41, 45 and 58. They did say it's quite possible I have Lyme since I have all the symptoms and history of a tick bite, and they are helping me with an herbal protocol for Lyme and Bartonella. (I did test borderline positive for Bartonella.) But they won't treat with antibiotics without a positive Lyme test. They'll just drain my wallet with mold testing and treatment instead.

I'm going to be moving this winter so I'll be looking for a new LLMD. I'll see what they say. I may have our new house tested for mold just in case.

Thanks also for suggesting modified citrus pectin. I'll keep that in my notes for future reference just in case.

Hope you're able to manage your mold toxicity. It sounds like a very tough thing to deal with.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 1041
   Posted 10/4/2017 1:05 PM (GMT -7)   
I have no doubt in my mind that mold in a building is a health hazard. Not one. But some of the mold testing stuff has me really uneasy. Shoemakers the only one to really make the HLA connection and I have mixed feelings on the man. A lot of his "mold testing" stuff is just testing basic inflammatory markers which may correspond to a number of other illnesses. I went through it myself and wasted a lot going down the mold rabbit hole. Yes we found some and spent a lot on reworking the house. I can't say i noticed a difference from it. Or the cholestryramine. And at the end of the day the only thing that helps is antibacterials. And my symptoms are distinct of Lyme. It walks like a duck and quacks like a duck so... Again I am 100% of the belief that mold is underemphasized in conventional medicine. I'm just not of the belief that good enough research has been done to diagnose and treat it. Focus on what you know to be true first. Then if you feel like you've done everything for Lyme and are still struggling you can come around to this issue again. Or you can do some basics right now if it doesn't take much out of you. But I wouldn't put all your eggs in this basket when there's a more obvious problem (aka Lyme)

astroman
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Date Joined Mar 2014
Total Posts : 3985
   Posted 10/4/2017 1:25 PM (GMT -7)   
Lapis_29 - Perhaps you could describe your symptoms you get in the presence of mold? This would help people wondering this.

Asking this since I've been close to mold many times, and didnt notice any new symptoms or symptom changes in addition to what I already had. None.

I also went partially down the mold money hole with a Dr. ...

Any Dr can print out the suggested Shoemaker mold test list and watch you shell out thousands without knowing anything that there doing.

Personally I think MR Shoemaker needs more clarification and certainty in his theories and expensive test suggestions. Mold is obviously a real health threat, but he cant 100% back all that he says. Maybe someday.

k07
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Date Joined Sep 2015
Total Posts : 2176
   Posted 10/4/2017 2:17 PM (GMT -7)   
I'm guessing they want you to do the realtime labs mycotoxin urine test. It's very pricey and if you don't have the money I would almost just assume you have mold and try some binders. Although different binders are used for different molds. Neil Nathan has a pretty good book on mold. I did the realtime test and had gliotoxin positive which can be mold or candida. I always have success with modified citrus pectin (NOW brand). It binds something so that I can sleep better. If I forget to take it I have major insomnia. I've read the MCP is a much weaker version of cholestyramine (CSM). I have not tried CSM, but have taken welchol and noticed no benefit from it. Other binders would be bentonite clay, charcoal, chlorella, etc. Also if you have access to FIR sauna it can be helpful along with liposomal glutathione.

I do not have the HLA mold gene but do have the Lyme gene (15-6-51).

Lapis_29
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Date Joined Sep 2017
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   Posted 10/4/2017 3:46 PM (GMT -7)   
k07 said...
I've read the MCP is a much weaker version of cholestyramine (CSM). I have not tried CSM, but have taken welchol and noticed no benefit from it.
(15-6-51).


biochemically MCP and CSM/welchol do THE EXACT SAME THING IN THE BODY!

they are both 'bile acid sequestrant' agents meaning they bind to and eliminate bile acid from the body. in that bile acid are choleserol and toxins that bind to cholesterol like mold etc.

they both reduce cholesterol in the human body by about 20%, meaning they have the same affectiveness. one is hundereds of dollars w. a script, the other is pennies and OTC

Lapis_29
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Date Joined Sep 2017
Total Posts : 509
   Posted 10/4/2017 3:50 PM (GMT -7)   
astroman said...
Lapis_29 - Perhaps you could describe your symptoms you get in the presence of mold? This would help people wondering this.

.


first is lung issues, tightening in chest, heaviness when breating, then overal sick feeling, then nausea, then more sick, then SUPER tired but still sleep like sht, no energy at all, extreme fatigue, feeling even more sick etc.

removing the mold is the only treatmtnet that really works. MCP helps a lot though

astroman
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Date Joined Mar 2014
Total Posts : 3985
   Posted 10/4/2017 5:34 PM (GMT -7)   
k07 said...
........... do have the Lyme gene (15-6-51).


Lyme gene? Cant say I've ever seen that before...new to a lot of people.

So.......its a gene that someone found is common with people who react to lyme bacteria (?)

This is worthy of a post in it self.

Pirouette
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Date Joined Mar 2014
Total Posts : 6201
   Posted 10/4/2017 5:47 PM (GMT -7)   
Lapis_29 -

I'm definitely going to look into MCP but I am dubious it has the same effectiveness as PURE CSM. Welchol is cr*p - it's mostly fillers and I wouldn't go near it. But the CSP does things no other binder has done in my body. And the $ is every bit worth the benefits. I would love to have a cheaper alternative, though. If you have any links you could post I would appreciate it.

btw - I have those sx - all from babs. Hard to tell what is what. My HLA result was neg but we remediated black mold from the house a few yrs ago. But I'm surrounded by mold on trees and plants. I had a bush in the back yard next to my bathroom window I keep open all the time and it was covered in black mold until I would wash it down once a week. Then it stopped growing. But it's pretty common.

Astro -
There is also a gene that makes people immune to Lyme. I've often wondered how that might have informed the bioengineering of Lyme........................

Why couldn't we all have a little western fence lizard in us?

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

Manzanita2
Regular Member


Date Joined May 2017
Total Posts : 92
   Posted 10/4/2017 6:31 PM (GMT -7)   
K07, yes, that's exactly the test they want to give me. Plus several IV glutathione sessions first to "challenge" it. Then they'll want me to retest a few times to see if treatment is helping.

If I treat Lyme-co for a year without good results I may look into mold but I'm not going to do it now. If my insurance covered the test I would but I doubt that it does.

Meanwhile, I wonder if modified citrus pectin will work as a binder for Lyme toxins the way activated charcoal or other binders we've been using does. If so, I may add it to my protocol since it would be useful even if I don't have mold sensitivity.

I'm definitely going to stay aware that mold could be an issue for me at some point even if it isn't now. You never know. Lyme/co has changed me so much. I never used to be sensitive to ANYTHING. Lately it seems everything bothers me.

Post Edited (Manzanita2) : 10/4/2017 7:34:25 PM (GMT-6)


Lapis_29
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Date Joined Sep 2017
Total Posts : 509
   Posted 10/4/2017 6:50 PM (GMT -7)   
Pirouette said...
Lapis_29 -

I'm definitely going to look into MCP but I am dubious it has the same effectiveness as PURE CSM. Welchol is cr*p - it's mostly fillers and I wouldn't go near it. But the CSP does things no other binder has done in my body. And the $ is every bit worth the benefits. I would love to have a cheaper alternative, though. If you have any links you could post I would appreciate it.



-p


looks like I was somewhat wrong, both reduce cholesterol the same, but CSM has more bile binding properties. '

-----------------------------

Effects of amidated pectin alone and combined with cholestyramine on cholesterol homeostasis in rats fed a cholesterol-containing diet

https://doi.org/10.1016/j.carbpol.2009.12.034

Abstract

The effects of amidated pectin (N-octadecylpectinamide) and cholestyramine on cholesterol homeostasis were compared in female rats fed diets supplemented with cholesterol at 10 g/kg. Amidated pectin and cholestyramine were added at 50 and 20 g/kg, respectively, alone or in combination. Both sorbents, alone or combined, significantly decreased concentrations of cholesterol in the serum and liver.

Amidated pectin significantly increased the faecal excretion of neutral sterols, and to a lesser extent also excretion of bile acids. In contrast, cholestyramine significantly increased the faecal excretion of bile acids only.

Quantitatively, the greatest faecal output of total sterols was found in rats fed both sorbents, however, the increase was moderate and statistically non-significant in comparison with output of sterols in rats fed amidated pectin alone.

In conclusion, amidated pectin and cholestyramine demonstrated a similar cholesterol-lowering effect; however, the modes of action of each agent differ.

k07
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Date Joined Sep 2015
Total Posts : 2176
   Posted 10/4/2017 7:52 PM (GMT -7)   
some llmd's start with mcp and then move on to csm. I have to assume that mcp can mildly bind biotoxins (lyme or mold). It definitely wouldn't hurt to give a try.

The lyme hla gene basically says you can't clear the lyme biotoxins and again need binder like csm. Researching this is what led me to try mcp. I agree with pirouette, welchol was junk for me.

ChickenArise
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Date Joined Nov 2015
Total Posts : 1241
   Posted 10/5/2017 10:01 AM (GMT -7)   
I have little experience with diagnostic tests but plenty of evidence of mold exposure and experience with attempting to recover a mold sick building. Fixing the leak is paramount.

I didnt get rid of all of my belongings and I hope that wont prove to be a mistake. I know porous items are likely to retain spores. The books that are likely contaminated have all been placed in a room where the lights remain always on.

We continuously ozonate the house with a commercial ozonator. You cannot be in the room when this is on so we rotate and do some rooms while we are out.

This isnt an end all solution for many have said they react to dead mold or fragmented mold spores as well. I do not seem to have this problem that I am aware of.

Concrobium mold spray has been applied to everything (attic also) with a cold foggger several times. Once we used Kleen Free (enzymes) which I have mixed emotions about.

We installed an attic fan which exhausts to apply negative pressure to the house and use it when its not raining.

As far as internal body cleansing goes some have said clay like Redmond and Bentonite have helped them with mold. I have little experience with these binders as I did not want to take them while on all the meds (I remain only on Fluconazole q72 hrs).

I may add them in the clays in the future but I am more focused on the preventing cancer from the aflatoxins that I have likely been exposed to. This is why I have added Fucoidan. It seems a bit strong and I cannot take this on a constant basis, so I am cycling it.

MCP did help and I still use it daily in large amounts 6000mg with 3200mg of Monolauren. Chlorella seems to have helped and I use it to a lesser extent.

I have added Red Raspberry Leaves but I cant say if its helping at all.

Although humidity has much to do with mold growth, spores exist in places that are arid also. Mold can grow with nothing more than a little short term humidity and dust as its food source.

It is humid where I am currently and I have thought of moving to a drier climate but I know of one person who did that for work and unfortunately got a bad case of cocci after moving. He will never be the same again as it got too far along before he treated.

I believe he got the cocci working in the oil fields of Texas if my memory serves and I do not know where in Texas as this is a friend of a friend and all second hand anecdotal info to the best of my memory.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
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