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Detection of Mycotoxins in Patients with CFS

Skiii

Senior Member
Messages
122
It was a great laugh though!

I meant more like, who has one and do you find it useful? And are the pop-ups good enough or is it better to just invest in the wood ones? (there's one on Wayfair for under $900)

I'm worried about using it at this point, and overdosing my body on toxins, I'm already having enough die-off symptoms. But I also know that I must have a lot stored up in my tissues, as my primary complaint is deep, trigger point-like knots in my muscles, which have slowly gotten worse and spread to more of my body during these 10 years. Deep-tissue massage is my godsend. So I'm thinking that maybe, once I get through the hard part of this protocol and am on the upswing, that a sauna might be the most useful thing to get all the stored up toxins finally out of me.
 
Messages
20
It was a great laugh though!

I meant more like, who has one and do you find it useful? And are the pop-ups good enough or is it better to just invest in the wood ones? (there's one on Wayfair for under $900)

I'm worried about using it at this point, and overdosing my body on toxins, I'm already having enough die-off symptoms. But I also know that I must have a lot stored up in my tissues, as my primary complaint is deep, trigger point-like knots in my muscles, which have slowly gotten worse and spread to more of my body during these 10 years. Deep-tissue massage is my godsend. So I'm thinking that maybe, once I get through the hard part of this protocol and am on the upswing, that a sauna might be the most useful thing to get all the stored up toxins finally out of me.

We have found sauna to be very useful. Sometimes the reduction in symptoms is more noticeable than other times, but overall it seems to help. We only wish he could do it more often and that it was more convenient (in our home). There are certainly mixed reviews on the pop ups. As far as an actual sauna, I've heard that another mold doc recommends saunas from the company Heavenly Heat. Probably worth checking out but they are pricey. I'm curious if anyone else has brand recommendations.
 
Messages
20
I had another die-of induced anxiety attack on Friday. My doctor said that as the toxins cross the blood-brain barrier, it causes brain inflammation, and your brain reacts by releasing stress hormones, which presents itself as an anxiety attack in me. This time, I was prepared with his advice. I took some herbal supplements he gave me, and instead of 'closing down' which is a natural reaction but actually makes it worse, I put on my boots and went for a walk outside. Being in the woods helped keep it from getting worse, but when I walked up hill it was like immediate relief- just like he said, the exercise got my brain releasing endorphins and good hormones, instead of the cortisol and stress hormones. After doing that a couple times, I felt like a new person within 30 minutes. Just an FYI if any of you deal with it.

Can you guys remind what Brewer said, and also personal experience, of how long it potentially takes to get through the die-off? Was it 12 or 16 weeks or something like that? I know it's just a guess, and that it's different for everyone. I'm at the 8 week mark, I'm hoping by spring it lessens.

I've only heard him say that some patients deal with crazy die-off symptoms and others don't, and for some it eventually goes away. I've never heard him give a time frame. We are 9 months in on the Nystatin and still experiencing die off. Sorry, that probably wasn't what you wanted to hear. He is getter better though! It's just slow. Don't give up hope!
 

Skiii

Senior Member
Messages
122
I'm not giving up hope, thanks! Good to know what I'm in for though. Doing it every other day is keeping my symptoms manageable so that I'm still keeping up with life. I have an appt on Thursday and I'll be talking with him more.
 

Ifish

Senior Member
Messages
182
We have found sauna to be very useful. Sometimes the reduction in symptoms is more noticeable than other times, but overall it seems to help. We only wish he could do it more often and that it was more convenient (in our home). There are certainly mixed reviews on the pop ups. As far as an actual sauna, I've heard that another mold doc recommends saunas from the company Heavenly Heat. Probably worth checking out but they are pricey. I'm curious if anyone else has brand recommendations.


We have a near infared sauna purchased from this company: http://www.nearinfraredsauna.com/index.html
We have the eco model and it works very well. I replaced the sitting stool with a wood lawn chair and it is much more comfortable.
You can debate near infared vs. far infared. All I know is it will make you sweat as much as you want.
One nice thing is that the unit can be disassembled into panels if it won't be used for a long time.
It is possible to turn a small bathroom into an infared sauna with a portable unit. A handy person can build one, but you are dealing with a lot of electricity and so you must know what you are dong.
 
Messages
4
Location
canada
This interests me because I think I've read it somewhere else, are there any actual documented cases or evidence of this happening?
And doesn't glutathione do the same thing anyway? It's supposed to be a chelator too and everyone universally agrees that glutathione is deficient and one of the most needed treatments for helping CFS/ME patients/

I have raised my glutathione production levels over the last few years and done well with it. It was a rather futile effort until I had some old mercury fillings removed however. Trying to chelate mercury should be done after the most obvious source(s) has been removed, imo.
 
Messages
32
What do you guys know about expired Meds on the protocol? I'm using ampho B that expired 12/19. I had a lot left from having to break due to die off. It still burns so I'm guessing it's working. Of course the pharmacy stands by discarding it at expiration but I have a lot with that exp date.
 
Messages
52
I used half a box that was over a month out of date as I also took a break due to over-reacting strongly to the meds.. The pharmacy said it would be more like a placebo at that point but I took them anyway. Hard to say if they were working or not- I could tolerate them better for sure.
 
Messages
32
Surely they are more potent than just a placebo. Still burns like fire and makes my nose bleed. I hate to throw all those Meds out but if they aren't going to work then I guess I should
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
I've used my regular dose of EXPIRED Nystatin and it didn't do anything. It had stopped working. I assume the critters had died. I could have tried using a bigger dose, but I didn't.

But Ampho B is a lot stronger to begin with. Heck, if it still does something then why not use it up?
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
Interesting Ifish, thank you for sharing this. I am still stuck at bacteria, first Burkholderia complex and then Pseudomonas aeruginosa took over.. sorry if this is repeat info, can't remember if I shared this here. Last ENT made extra holes in upper sinus floor which is causing re-circulation, stagnation, thick mucus and what seems like mast cell activation.

I will need surgery to correct this before any therapy will be helpful. I can see a concern with creating inflammation.. makes sense. The Chelating PX has mast cell triggers in it. I alternated the regular Chelating with the Chelating PX to help with that when I was atomizing Cipro for the Pseudomonas. I felt good on that regime. It was great for clearing out my sinuses as well. That was significant for me.

Mast cell activation can cause systemic inflammation, so it's important to recognize and address, especially in this context.

A great difficulty with the protocol is trying to understand what is happening and knowing when to make adjustments. It is difficult to understand when you are having a die off reaction or when you are reacting to either the antifungal medication or the Chelating Px. A third possibility is that a bacterial infection has taken hold.

We have learned a hard lesson these last few months. We began the protocol in April, started getting better around July then the three of us (my wife, youngest daughter and I) all got bacterial infections in August. Despite that, we continued to get better for while, but then things got worse. My wife eventually got her bacterial infection under control but my daughter and I became much worse from about mid-October until recently. We went on numerous rounds of antibiotics to no avail. I became about as bad as I have ever been.

Thankfully we were able to turn things around. My ENT had commented that the reason I couldn't overcome the sinus infection was because I had so much inflammation which might be rendering the antibiotics ineffective. I asked him if the Ampho B might be causing the inflation and he said it possibly could. Later, my wife and I realized that she became better some time after she had switched from using the Ampho B to Nystantin.

A few weeks ago my daughter and I stopped everything - the antibiotics, the Ampho B and the Chelating Px for several days. We then switched over to Nystantin every other day and started treating the sinus infection with Levaquin. We didn't realize that, even though we felt we were tolerating the Ampho B just fine, it was actually causing a great deal of inflammation which was effectively preventing us from clearing the bacterial infection. We recently completed the round of Levaquin and we are doing better. Just stopping the Ampho B made me feel better, even before starting the Levaquin. It is noteworthy that we had used this antibiotic without effect previously, and it started working only when we stopped using the Ampho B.

Brewer has indicated to me that some people do not tolerate the Chelating Px and he is treating some patients without it. Time will tell whether this can be effective.

So here is my take away from all of this:

1. Even if you tolerate the Ampho B ( or maybe the Nystantin or Chelating Px) it might be causing inflammation.

2. The inflammation might be making you feel worse in and of itself, and/or it might be preventing you from clearing a bacterial infection.


Even though the Nystantin probably is not causing a great deal of inflammation, I've decided to continue every other day treatment rather than daily in an effort to minimize inflammation and help keep bacteria under control. We are also starting a maintenance dose of azithromycin prescribed by our immunologist.

I came across a very informative article that indicates that sinus fungal growth can cause damage which reduces the ability to control bacteria. http://www.sinuses.com/md.htm

"Fungal growth was found in washings from the sinuses in 96% of patients with chronic sinusitis. Normal controls had almost as much growth, the difference being that those patients with chronic sinusitis had eosinophiles which had become activated. As a result of the activation, the eosinophiles released MBP (Major Basic Protein) into the mucus which attacks and kills the fungus but is very irritating to the lining of the sinuses. It is believed that MBP injures the epithelium and allows the bacteria to proliferate. An assay has been developed for major basic protein (MBP) which may be helpful for evaluating sinusitis due to fungal disease."

We lost a great deal of time and went through some dark days to figure this out. I'm hoping others can avoid this scenario. We are feeling better again (though not as well as a few months ago) and I feel like things are back on track.
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
Using this quote to tag you Ifish. There is an internet talk radio show with I think Neil Nathan, Jacob Teitelbaum, and Joseph Brewer as guest. They did talk about binders and it seemed that Brewer was 'Into' binders.. ?? Wondering if you have thoughts to share on that given he did not speak up saying he saw no need... ??

He wasn't specific with me on that. I assume he was talking about intolerance of Chelating Px rather than die off. With die off you'd want to manage it rather than stop using it altogether.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
We are 9 months in on the Nystatin and still experiencing die off.
What dose of nystatin does he start people on (oral). I can tolerate the powder if used in my electric net pot (Grossan Hydropulse) but the oral dose of 500,000 units knocked me out.

Sushi
 

aquariusgirl

Senior Member
Messages
1,732
just saw brewer ...he is very gung ho on this txtment... my jury is still out... but I haven't been doing it consistently.
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
What dose of nystatin does he start people on (oral). I can tolerate the powder if used in my electric net pot (Grossan Hydropulse) but the oral dose of 500,000 units knocked me out.

Sushi
Hi Sushi,
Dr. Brewer is not prescribing oral Nystatin. He is having people mix it into a saline solution and blast it up into their sinuses with a NasaTouch areosolizer. I think he might be prescribing 50,000 units. You'd have to ask one of his patients for confirmation on that.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
He is having people mix it into a saline solution and blast it up into their sinuses with a NasaTouch areosolizer.
That is more or less what I am doing. I am also supposed to use an EDTA nasal spray but that is also hard to tolerate. I hear that Dr. Brewer is doing that too.

Sushi
 

Ifish

Senior Member
Messages
182
Using this quote to tag you Ifish. There is an internet talk radio show with I think Neil Nathan, Jacob Teitelbaum, and Joseph Brewer as guest. They did talk about binders and it seemed that Brewer was 'Into' binders.. ?? Wondering if you have thoughts to share on that given he did not speak up saying he saw no need... ??

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.
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
That is more or less what I am doing. I am also supposed to use an EDTA nasal spray but that is also hard to tolerate. I hear that Dr. Brewer is doing that too.

Sushi
Yes, I believe he is prescribing a chelating prescription that contains EDTA. He is using it to break up the biofilm in the sinuses. In this thread we have talked about a very gentle alternative, which is a drop of Johnson's baby shampoo in saline solution. I wonder if you would be able to tolerate that.

I admit I am not doing either of those. I am using a salt inhaler instead. I like it a lot. If it hadn't worked, I was going to use the baby shampoo.
 
Messages
20
Hi Sushi,
Dr. Brewer is not prescribing oral Nystatin. He is having people mix it into a saline solution and blast it up into their sinuses with a NasaTouch areosolizer. I think he might be prescribing 50,000 units. You'd have to ask one of his patients for confirmation on that.

My bottle of Nystatin from ASL/Sinus Dynamics Pharmacy says 50,000 IU. You mix it with saline solution and use it in the Nasatouch atomizer. The ingredients for the Chelating PX are EDTA/Acetic Acid/PS80. I'm not sure what that all means, but maybe it will help someone!