Detection of Mycotoxins in Patients with CFS

[soulfeast]

Curious if Ifish and others using this protocol rinse sinuses out with a Neilmed type bottle before using the Chelating PX or the Ampho B to flush out mucus build up?

 

[Ifish]

None of us have done an additional rinse, but I see no reason why you couldn't. Some of the medicine falls right back out along with alot of mucus, so things get cleaned out pretty well just doing the protocol.

 

[redaxe]

There are lots of people who find their MECFS goes into remission when they change location or go camping etc. It is usually called the "location effect" and/or "mold avoidance". Look for the location effect facebook page and forum, look in the "Biotoxin" section of these forums, go on Yahoo's CFS Locations board. There are some blogs too by properly-defined PWC's who experience this. Lot's of Dr Shoemaker's work is relevant. Look at Cort Johnson's healthrising site for stories and look up "chronic inflammatory response syndrome" - you probably have it. Lot's of people on the CFS HealClick site talk about this too.
I have no idea why this isn't the topic of intense research and discussion by patients...!

Thanks for the info - that will give me some direction on where to go from here -
And, so after taking a few days off the anti-histamines and noticing a gradually worsening state & then re-introducing them I seem to pick up again. So yes I think I'm finally on the money here!
It is amazing just how much of a general improvement I notice. I can get up much more easily in the morning and feel like I can take on the world!

And interesting about what you say about the lack of attention that mold & mast cell activation gets from doctors that specialise in CFS. None of the doctors or specialists I've seen have even considered this, and Jacob Teitelbaum's book which I have doesn't even mention it either. He seems to point these sort of symptoms I have squarely at Candida but that doesn't fit with the "location effect". When I was camping I was consuming a lot of chocolate & alcohol and I was fine...

 

[aquariusgirl]

Die off is horrible. What are folks using for it?

 

[Ifish]

Die off is horrible. What are folks using for it?

The thing that will help the most is to cut back on treatment. Brewer will have some patients treat every other day or even every third day. I have started using charcoal and I feel that it helps some.

 

[aquariusgirl]

yeah. doing that, plus half doses...still messes with my gut.
which of the 3 classes of mycotoxins did you score highest for?
i was aflaxtoxins....wonder if it makes a difference

 

[soulfeast]

None of us have done an additional rinse, but I see no reason why you couldn't. Some of the medicine falls right back out along with alot of mucus, so things get cleaned out pretty well just doing the protocol.

I worked up to atomizing all my meds at once (2 abx and Ampho B plus Chelating PX). I had another mast cell like reaction with breathlessness and my usual symptoms. Vancomycin (one of my abx) and Ampho A are both mast cell triggers. I think the acetic acid in the Chelating PX is a trigger since I had a typical flushing response after using it.

So, I need to work with my ENT and the pharmacists.

I did noticed that there was a lot of mucus releasing (which is great) but it was clearly AmphoB yellow. It looked like I was losing a lot of medication. When I talked with one of the pharmacists when first ordered meds, she suggested rinsing beforehand and maybe that makes sense. I also took all at once.. still experimenting since I have no clue how much leeway my particular bugs allow.. I figured it was the Chelating PX that caused the mucus release. But maybe not since you are getting this when separating the Chelating PX from the Ampho B.

I did pick up some baby shampoo and noticed that it also contains EDTA in addition to the "px" component which I think is PEG-80 sorbitan laurate?. I wish there were not so many additional chemicals in this shampoo and dyes.

 

[Ifish]

yeah. doing that, plus half doses...still messes with my gut.
which of the 3 classes of mycotoxins did you score highest for?
i was aflaxtoxins....wonder if it makes a difference

I did several tests in the past because I was trying different treatments. The results were variable. Generally aflatoxins were the lowest of the three, so I guess we are opposites. Sorry you are feeling so terrible, but it does suggest the medications are working. In the past I've tried a number of different binders but none of them did anything for me. I know Brewer was trying different binders but he doesn't seem to be promoting it right now. He didn't even suggest using any the last time I saw him.

The best I can do is say the three of us in my family all experienced very profound die off reactions early on but they did ease up over time.

 

[Ifish]

I worked up to atomizing all my meds at once (2 abx and Ampho B plus Chelating PX). I had another mast cell like reaction with breathlessness and my usual symptoms. Vancomycin (one of my abx) and Ampho A are both mast cell triggers. I think the acetic acid in the Chelating PX is a trigger since I had a typical flushing response after using it.

So, I need to work with my ENT and the pharmacists.

I did noticed that there was a lot of mucus releasing (which is great) but it was clearly AmphoB yellow. It looked like I was losing a lot of medication. When I talked with one of the pharmacists when first ordered meds, she suggested rinsing beforehand and maybe that makes sense. I also took all at once.. still experimenting since I have no clue how much leeway my particular bugs allow.. I figured it was the Chelating PX that caused the mucus release. But maybe not since you are getting this when separating the Chelating PX from the Ampho B.

I did pick up some baby shampoo and noticed that it also contains EDTA in addition to the "px" component which I think is PEG-80 sorbitan laurate?. I wish there were not so many additional chemicals in this shampoo and dyes.

I may have mentioned this before, but Brewer recommends avoiding any other medication in the sinuses at least one hour before or after the Ampho B, preferrably longer. It works by binding the sterols in cell membranes and he thinks it will bind to other compounds so using it with other medications could render it inert.

I had some concern with too much medication falling out until my ENT prescribed atomized clindamycin for a bacterial sinus infection. It is nasty tasting stuff. Every time some phlegm came up I could tast the clindamycin, even hours later.

 

[soulfeast]

I may have mentioned this before, but Brewer recommends avoiding any other medication in the sinuses at least one hour before or after the Ampho B, preferably longer. It works by binding the sterols in cell membranes and he thinks it will bind to other compounds so using it with other medications could render it inert.

I had some concern with too much medication falling out until my ENT prescribed atomized clindamycin for a bacterial sinus infection. It is nasty tasting stuff. Every time some phlegm came up I could tast the clindamycin, even hours later.

Thank you, Ifish. You did, but I have not heard that explanation (or don't remember). I forgot that I did wait over an hour before atomizing the AmphoB. Oh, yes, so the AmphoB did caused all that mucus release, or the Chelating PX had time to break things up. I put the Chelating PX in with the antibiotics, waited an hour or so then atomized the AmphoB, then I had a big mucus release.

 

[Forebearance]

Are you guys spitting this mucus out, or swallowing it?
Or does it come out your nose?
(sorry about the graphic nature of these questions)

 

[David.B]

So far I have to say the treatment appears to be having a positive effect. I switched from Ampho B to Nystatin to see if it helps with my visual migranes possibly being triggered by the Ampho B/detoxing. I took a week or two off from it and I feel remarkably better; best I have in awhile. I just started the Nystatin see how that goes.

I'm also trying to keep myself active as much as possible (sweating). I'm going to try swimming again this week; I actually feel that much better

 

[soulfeast]

Are you guys spitting this mucus out, or swallowing it?
Or does it come out your nose?
(sorry about the graphic nature of these questions)

When the mass comes out, it's coming through my nose with urge to blow it out.

 

[soulfeast]

So far I have to say the treatment appears to be having a positive effect. I switched from Ampho B to Nystatin to see if it helps with my visual migranes possibly being triggered by the Ampho B/detoxing. I took a week or two off from it and I feel remarkably better; best I have in awhile. I just started the Nystatin see how that goes.

I'm also trying to keep myself active as much as possible (sweating). I'm going to try swimming again this week; I actually feel that much better

Thank you for this update, David B. It's good to hear you are doing well! How long were you on Ampho B? While I have you, wondering about how you all were told to disinfect equipment. I am boiling at end of the day. I am not sure if it's ok to just rinse during day between uses or more should be done to sterilize?

 

[soulfeast]

I have a question about cleaning the atomizer between uses. Are you all just rinsing between daily uses and then sterilizing nightly or how often? What do you use to rinse, if doing that. A bit concerned about using tap water.

 

[dannybex]

Are you guys spitting this mucus out, or swallowing it?
Or does it come out your nose?
(sorry about the graphic nature of these questions)

I haven't started the 'official' Brewer protocol yet, but although the majority of my sinus infection is that classic biofilm-type thick wad of gunk, there's a lot of post nasal goop dripping down…for the last year, but esp the last six months or so. So there's no way to prevent swallowing it…hence my question about binders earlier in this thread...

 

[soulfeast]

I haven't started the 'official' Brewer protocol yet, but although the majority of my sinus infection is that classic biofilm-type thick wad of gunk, there's a lot of post nasal goop dripping down…for the last year, but esp the last six months or so. So there's no way to prevent swallowing it…hence my question about binders earlier in this thread...

After doing this a few more times, I am getting post nasal secretions and yep, difficult to get all that out. So does beg the question if mycos are in that stuff and what's becoming of it. I am guessing that Brewer sees levels going down and patients improving to various degrees thus no pressing need to bind this stuff up in GI tract. But seems charcoal at least might help. I thought I read somewhere (maybe here or CFS Patient Advocate interview with Brewer) that Brewer said that charcoal helps or might help bind up fungal fragments?

 

[Ifish]

After doing this a few more times, I am getting post nasal secretions and yep, difficult to get all that out. So does beg the question if mycos are in that stuff and what's becoming of it. I am guessing that Brewer sees levels going down and patients improving to various degrees thus no pressing need to bind this stuff up in GI tract. But seems charcoal at least might help. I thought I read somewhere (maybe here or CFS Patient Advocate interview with Brewer) that Brewer said that charcoal helps or might help bind up fungal fragments?

Your right, Brewer does have the view that mycotoxin levels are going down without binders and so you don't really need them. I believe the reference in the CFS Patient Advocate was a previous view. At one time Brewer had a number of patients on oral antifungals and binders (mostly charcoal) with minimal effect.

I have tried charcoal recently, especially on my bad days. It might help me some, but not alot. But it is cheap and easy to use, so why not? I once did a two month trial on colestyramine without any effect. Brewer believes that people with a major exposure and no sinus colonization can benefit from binders in order to accelerate removal, which is the basis for Shoemakers success early on.

 

[Ifish]

I have a question about cleaning the atomizer between uses. Are you all just rinsing between daily uses and then sterilizing nightly or how often? What do you use to rinse, if doing that. A bit concerned about using tap water.

I am generally just rinsing in tap water. The instructions with the atomizer indicate you can boil to sanitize or submerge in water and vinegar.

 

[soulfeast]

Your right, Brewer does have the view that mycotoxin levels are going down without binders and so you don't really need them. I believe the reference in the CFS Patient Advocate was a previous view. At one time Brewer had a number of patients on oral antifungals and binders (mostly charcoal) with minimal effect.

I have tried charcoal recently, especially on my bad days. It might help me some, but not alot. But it is cheap and easy to use, so why not? I once did a two month trial on colestyramine without any effect. Brewer believes that people with a major exposure and no sinus colonization can benefit from binders in order to accelerate removal, which is the basis for Shoemakers success early on.

Ifish, do you know what Brewer thinks of Shoemaker's HLA typing? I am curious especially because my husband has a multisuseptable 11-12-53b and is fine. He is sure he has had many exposures with moldy homes in the past. He also has lyme and did not "herx" while on a year of abx. I have my mother's multisuseptable 4-3-53 and was in what would be considered a level 5 sick building (her home with over 20,000 spore count.. not sure what was in there) and mold behind half the walls and all plumbing (very very bad builder-this was a new home and 3 years old when remediated). She seems fine, though has chronic pain issues. I am sure she has been exposed many times over her 74 year life time. Makes me question. I don't know how Shoemaker came to this conclusion.. the science behind it.