Detection of Mycotoxins in Patients with CFS

[mamakate]

I listened to the talk show. I was really suprised that Brewer talked about using binders. He certainly has not been enthusiastic about binders when I have talked to him about it. More recently he has shown more interest in the use of saunas to release mycotoxins from the tissues.

A few years ago I did a treatment for three weeks involving the use of IV amino acids. My urine mycotoxin levels jumped up dramatically but I didn't feel any better.

I think the most interesting part of the radio show was Neil Nathan's reference to the use Argentyn 23 colloidal silver.

The point Brewer made to us, which I think makes sense, is that if you test positive for mycotoxins in your urine, that means your body is able to get rid of mycotoxins. That's why he's not big into binders. However, he has told us that if we feel like they help to continue with them. My husband can't really tell a difference, other than binders can sometimes make the situation worse. Two examples are when they make you constipated (toxins get stuck and pain increases) or when they bind to your other medication making them ineffective (especially your pain meds!) Right now we are doing a little modified citrus pectin before bed, but that's it. And sauna, which is really helpful.

I'm really excited about this treatment. My husband has made a lot of progress in the past few weeks and we are praying it continues!

 

[Skiii]

Hi. Checking in because all week I've not felt well... on Monday it felt like I had a mild flu, and since then I've had nausea and vertigo. I'm not sure if I got virus (my daughter had thrown up just a couple times the previous Thursday), or if it's this treatment, or if it's virus that's lingering because of this treatment. It's awful. Haven't been able to do the protocol while feeling lousy, nor take my binders much. I'm not really sure what to do.

 

[Forebearance]

Hi. Checking in because all week I've not felt well... on Monday it felt like I had a mild flu, and since then I've had nausea and vertigo. I'm not sure if I got virus (my daughter had thrown up just a couple times the previous Thursday), or if it's this treatment, or if it's virus that's lingering because of this treatment. It's awful. Haven't been able to do the protocol while feeling lousy, nor take my binders much. I'm not really sure what to do.

Sympathy for you, Skiii. I hope you feel better soon!

 

[Ifish]

Hi. Checking in because all week I've not felt well... on Monday it felt like I had a mild flu, and since then I've had nausea and vertigo. I'm not sure if I got virus (my daughter had thrown up just a couple times the previous Thursday), or if it's this treatment, or if it's virus that's lingering because of this treatment. It's awful. Haven't been able to do the protocol while feeling lousy, nor take my binders much. I'm not really sure what to do.

Skii,
It sounds like you have a winter bug of some sort. What I have learned from Brewer is that you can take four or five days off and it won't set you back, so why not take some time off to recoup? The one thing you can't do is get so overwhelmed that you give up on the whole thing.

Brewer told me about a patient that got well on the protocol after only six weeks, but that is extremely rare. We are now at ten months and for all four of us the imrovement is undeniable, yet there is still a very long ways to go if we are going to get to well or nearly well. It is a long term deal for most, so there is no need to overdue it in the short term.

Even if you go off the protocol for more that four or five days it probably won't hurt anything. Just be consistant when you get going again.

 

[Skiii]

Thanks. I just keep waiting thinking it must be the last day, nausea and vertigo are flat out annoying.

Glad to know going off for 4-5 days won't hurt to much, but I feel like every time I start to get consistent, something gets in the way and throws me off like this.

 

[mallen12132]

I posted in here a couple of months back, just wanted to post an update on my status and see if any of you can help me out with a bit of information:

- I lived in a house that had mold issues, stachybotrys and who knows what else.
- Urine test showed Trichothecenes in urine
- Spent 1 week in hotel, felt amazing compared to how i've felt elsewhere.
- Determined it was time to move, moved to different house (old childhood home)
- Started to feel better while on the protocol at this house, but never as good as I felt while at the hotel.
- I started the supplements at the same time as I moved over here, this could have been why I was feeling better here.
- Started getting blurry vision, stopped taking ALL supplements to see if it resolved
- Condition started regressing toward feeling how I did at the other house
- Removed dishwasher in this house to move to another house
- Found mold in THIS house as well, sent off a sample, Chaetomium and Aspergillus/Penicillium were the types found

This is where I am currently. I have regressed for a while and been feeling the same here as I was at the other house now. Then discovered there is mold here as well. I find conflicting information regarding Chaetomium, how bad is this one? Some sites say it can be as bad as Stachy...

Also, in regards to Aspergillus/Penicillium, it doesn't say specifically which type, but my understanding is that some of these can be extremely toxic as well.. dependent on which type this is.

Interested in any input you all may have. I am out of houses to go to now, and truthfully, finding something in the New Orleans area without any mold is probably going to be an uphill battle. Just want some insight on if Chaetomium and Aspergillus/Penicillium could be making me fatigued all over again to confirm that it isn't just "in my head" as some people are saying I am probably just stressing over it.

Thanks for any help that anyone can lend. Hope all of you are progressing.

 

[psz]

Chaetomium is bad, it normally only appears after prolonged heavy dampness. It usually arrives just before or with Stachybotrys.

Asp/Pen are literally everywhere, all the time. Some species of this family are more harmful than others but you'd find these even in "good" houses. Quantity matters of course too.

 

[Forebearance]

I'd say the way you are feeling is the answer to your question.
Once you've been exposed to toxic mold and have removed yourself from it, your immune system may become touchy about being re-exposed to mold toxins, no matter what kind they are.

Empathy for your situation! I've been without a home for a couple years now.

 

[Skiii]

Oh, I meant to mention this to all of you. When you use the Nasotouch, spray it straight up. I'd been tilting the nasotouch to each side a bit, thinking it would get the medication into my maxillary sinuses. My doctor noticed that I was getting the start of a little ulcer from it spraying against the wall. Just in case any of you are doing that, too!

FYI the dizziness/nausea I was experiencing... apparently the flu strain that is going around here was short and mild, and that's most likely what I had. I got better and of course then got a head cold. I had been off the Nystatin for a week and a half, so I tried doing it on Friday and now of course have spent the entire weekend completely stuffed up and miserable. I feel like I'm never going to get better if I'm never able to be consistent.

 

[timandmarci]

First time posting. Found this thread today. I have been diagnosed with Mast Cell Activation Disorder at Mayo. Elevated blood tryptase and prostaglandins. I have mycotoxin levels Ochratoxin 2.1 ppb and Tricothecene .46 ppb.

Symptoms are fatigue, lightheaded, chest pain, GI issues, pulsation throughout body.

Just learned of Dr. Brewers protocols. Wondering if anyone out there has any experience with mold or sinus fungal colonization causing mast cell activation?

 

[mallen12132]

http://moldinspectionandtest.com/ Does anyone know anything about this company? Anyone used them? They seem to be the best in my area, so I am thinking to give them a try on a house I am considering renting. Hopefully the third time is a charm..

 

[Soundthealarm21]

@mallen12132

Their website looks alright, and they seem to know what they're talking about.

 

[Forebearance]

FYI the dizziness/nausea I was experiencing... apparently the flu strain that is going around here was short and mild, and that's most likely what I had. I got better and of course then got a head cold. I had been off the Nystatin for a week and a half, so I tried doing it on Friday and now of course have spent the entire weekend completely stuffed up and miserable. I feel like I'm never going to get better if I'm never able to be consistent.

Skiii, have you tried using Xlear? Their nasal spray with Xylitol has been really clearing out the stuffiness in my nose.

 

[Roy S]

Skiii, have you tried using Xlear? Their nasal spray with Xylitol has been really clearing out the stuffiness in my sinuses.

For what it's worth, I'm in touch with a patient who was recently doing well just camping in the desert doing extreme mold avoidance. She tried Xlear there and reported "all hell broke loose" with symptoms. From what I've read Xlear in addition to the xylitol has grapefruit seed extract which is antifungal and antimicrobial.

http://www.xlear.com/xlear-xylitol-products/nasal-spray/

 

[Skiii]

Hadn't heard of it, thanks Forebearance. I'll see if I get the rinse packets with xylitol in it.

@Roy S , funny, I saw the grapefruit seed extract and wondered if that would cause additional herx.

 

[Forebearance]

For what it's worth, I'm in touch with a patient who was recently doing well just camping in the desert doing extreme mold avoidance. She tried Xlear there and reported "all hell broke loose" with symptoms. From what I've read Xlear in addition to the xylitol has grapefruit seed extract which is antifungal and antimicrobial.

http://www.xlear.com/xlear-xylitol-products/nasal-spray/

Wow, Roy S, that's kind of shocking to me. It seems super gentle and doesn't have any side effects in me. But then I've been spraying colloidal silver up my nose for years.

 

[spindrift]

Hi everyone,

I'm the patient Roy referred to. I have been following the thread but not posting because I am preoccupied trying to find a living space that works for me. Living in car right now. I plan on joining in on the conversation once I find a place that works. Don't hold our breath though, that can take a while.

Just a short note: Xlear contains saline, xylitol (breaks up biofilms) and a small amount of grapefruit seed extract (is anti-fungal among other things) as a preservative.

I was starting to get better in the desert and then decided to ad sinus rinses with Xlear. The reaction was so bad (all my ME symptoms increased) that I had to stop because I need to function somewhat while living in my car.

That all being said, I had cross contaminated my car (former apartment had a mold problem) and started decontaminating it with ozone. While doing this I noticed when I would breathe in ozone, I would immediately start feeling better. Please don't lecture me, I know well enough myself not to breathe in ozone because it is dangerous. Sometimes when things got really bad, I would do it anyway, just for the insta-relief!

My thoughts then were, I definitely have something going on in my sinuses which contributes to my ME. If it is fungal and I am killing the fungus (with Xlear), the fungus will throw off lots of mycotoxins while dying and making me more sick during the die-off process. If I kill of the fungus and breakup the mycotoxins at the same time (using ozone), I seem to get better without the "herx". Since ozone is not a good option, I looked into photocatalytic air purifiers which like ozone should kill fungi and also break up mycotoxins at the same time. In a nutshell: Photocatalytic air purfiers work by generating hydroxyl (HO) which should be safer to breathe in than ozone. If that is all the way safe, I don't know. Hydroxyl doesn't work as fast as ozone because it is not as aggressive but will work on the long run to break down fungi. Anyway, I have been running an Air Oasis 3000 Xtreme air purifier in my car (while being in the car and breathing in the hydroxyl) for about two weeks now (especially at night when fungi thrive). I should mention the Air Oasis 3000 Xtreme is for 3000 square feet and really overkill for a car. Low and behold, the inflammation in my whole body including brain is getting better. I should also mention, breathing in the hydroxyl seems to work faster and better for me than just doing mold avoidance in the desert. I left the desert before I tried the hydroxyl. Disclaimer: I did NOT do any scientific research, the above is an anecdotal report of what happened when I was just throwing things against the wall to see what sticks. It is NOT medical advice.

I am still waiting on my HLA test results so I don't know what my genetic predisposition is. I do believe, if a person has a genetic predisposition for biotoxin illnesses, they should practice mycotoxin avoidance on all levels, i.e controlling environment, eating safe food, taking sequestering agents and clearing any fungal infections they may have. While we feel breathing mycotoxins more intensely because they go straight to the brain through the olfactory bulb, it is important to remember that they can also enter the body through the skin, the eyes and by being ingested.

There is so much more to say but I am getting a new apartment next week and really need to focus on that. This crazy situation is kinda stressing me out

 

[Forebearance]

Hi spindrift,
To say it is stressful is an understatement! I hope you continue to feel better and reduce inflammation. Thank you so much for sharing with us. And best wishes with your new apartment.

 

[andjo]

From my experience I've noticed that almost everyone tests positive for atleast one mycotoxin in Realtime Labs mycotoxin panel, no matter if they had any known WDB exposure or not (or even ill).

I'm wondering if it's a pointless panel (misleading) to take, since these mycotoxins occour naturally in alot of our foods and in that sense it would be quite unusual to be completely negative. Unless you eat foods completely free of them ofcourse.

What would make a little bit sense however is that ME/CFS patients might tend to detox these substances slower, and for that reason have a higher tendency to get a positive result. But if this would be the case, what does it say about the patients mold exposure - not much.

In all studies I've found they always refer to "Negative control patients had no detectable mycotoxins in their tissues or fluids." and I can only find one study who confirms this, which is: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680627/ by Dennis G Hooper. Everything comes back to this one person and he is the one person running Realtime Labs. Have anyone found any other sources of healthy controls _not_ having mycotoxins in them - in either urine or serum?

Could anyone confirm if this LA Times article is about the realtime labs Dennis Hooper?
http://www.latimes.com/local/la-me-kdday3dec07-story.html

I'm sure alot of things in it is exaggerated in standard journalism-style. But some disturbing things pops up though like:

"The Health Care Financing Administration determined that Hooper had falsely claimed the lab was accredited by the College of American Pathologists. In fact, he had never applied for such accreditation, government records say. The regulators also found that Hooper closed the lab to avoid an inspection. The government banned him from owning or operating a pathology lab anywhere in the United States for two years."

"He captivated friends and colleagues in the mid-1990s with ideas for lucrative diagnostic and research labs."

"Colleagues and other investors say Hooper appeared to be the high-rolling businessman, entertaining them in casino suites and fancy restaurants."

 

[psz]

Valid concerns.

One pointer to the test being viable is Brewer's experience of patients' symptoms corresponding to the numbers and the numbers generally going down with treatment or up with things like exercise and sauna.