Detection of Mycotoxins in Patients with CFS

[Forebearance]

The pharmacy called me to arrange for shipping and payment.
Best wishes with this, @Little Bluestem!

 

[detts]

What have people tried for treating resistant staph in the sinus? I was treated for it a year ago but it has come back. I did a month on BEG spray. This seems to be the crux of my issues - or at least a big part of it. I do OK on the ampho b and chelating agent and have been on it 9 months or so - but this staph sets me back again.

 

[Little Bluestem]

To those who are using Nystatin:
How are you feeling? Do you have any (side) effects that reduce your level of functionality?

My doctor gave me a prescription for Nystatin. I have more than usual to do now, so I may wait to start the treatment.

 

[Sushi]

To those who are using Nystatin:
How are you feeling? Do you have any (side) effects that reduce your level of functionality?

I use nystatin in several ways: in my sinus wash and orally. Nystatin is something that most people have to build up very slowly from a low dose or you are likely to feel like crap. That's my experience anyway.

 

[Little Bluestem]

My doctor said I could take mine orally too, if I wanted. At full dose, how much do you use in your sinus wash and how much orally?

 

[Sushi]

My doctor said I could take mine orally too, if I wanted. At full dose, how much do you use in your sinus wash and how much orally?

In my sinus wash (Grossan Hydro Pulse) which holds 500 mls, I put only a tiny pinch--any more burns.

Orally, about 1/8 th teaspoon, but that could be too much for a starting dose. It is individual.

 

[Forebearance]

I can report that at 10 months in, I am feeling really sleepy and tired and seem to be detoxing a lot. I am definitely incapacitated, but it seems to be in a good, healing way.

 

[Gingergrrl]

@Forebearance I know you may have already done this and I apologize but I was wondering if you could summarize your mold protocol (what worked and what did not, etc) as I know you have been at this a long time. Only when you have time of course!

 

[Forebearance]

Okay @Gingergrrl, I'll do it on the biotoxins section.

 

[Skiii]

Hi, just checking in. How is everyone doing?

I'm 2 months in, was doing the Nystatin every other day but now I'm at every third day. Fatigue has been overwhelming lately.

 

[Ifish]

Hi, just checking in. How is everyone doing?

Much has happened for us since my last update in April. We are now in our 16th month. There was a time that I became concerned that we had reached our maximum potential, but my daughter and I have experienced more improvement recently.

What stands out most for me is stability. I haven't had any bacterial sinus infections for months. My lows are not as low, my worst days not so bad. Every day is a pretty decent day.

My daughter has clearly improved as of late. She now walks and runs about 3 to 5 miles a day, is taking a dance class, goes to two knitting groups, has signed up to volunteer at an animal shelter, and has joined a book club. She drives her own car. She watches very little TV and reads books consistently. Next month she will start the GED program. This is the first time I've been confident she can really do it. She told me recently that at her very best, she feels about 70% of normal. A few months a go, she could only leave the house for one significant event a day. Now she can do two or three.

Sixteen months ago she was so sick she was nearly 100% homebound. Her improvement has been unreal.

Unfortunately my wife has not fared as well. Her former job, which she held for over four years, seems to have provided a double whammy. First, the time demands were so great that she couldn't find the time to do the sauna with any consistency. Second, it seems pretty obvious the building she worked in has a great deal of growing mold. Many employees complained of sinus issues, headaches, etc. upon entering the building which improved after leaving. A recently mycotoxin panel shows she still has very high levels in her system, especially tricothecene.

My wife resigned from this job in June and is now working a job with less hours and a much better physical environment. I am confident this change will turn things around for her.

Brewer and his patients are learning as they go. There is more clarity as time goes on. Consistency and patience is the key. As mycotoxin levels go down, improvement occurs.

My daughter also repeated mycotoxin panel recently. When you look at our collective results, much can be learned. I hope to put this together to post at a later time.

 

[Forebearance]

Hang in there, Skii!
(my eyesight is so blurry right now that I can't tell if you have two or three "i"s in your name. lol)

That is SO great about your daughter, Ifish! I have a lot of hope for your wife now that she is away from the bad building. Thank goodness she got away.

I feel like my health is improving the way a cruise ship turns around. Very, very gradually.
Yesterday my sinuses were hurting in places I didn't even know I HAD sinuses. So deep inside my head. I'm choosing to look at it as a good sign that things are happening in there.

 

[foxy loxy]

I am glad to hear the updates. I am seven/eight months in. I have been doing slightly better. I attribute this to a change in my antibiotics though! At least the change occurred after I switched antibiotics...

I can't say amazing things are happening with the nasal protocol and I get discouraged and feel tempted to drop it. My hair is continuing to drop out and I wonder if it isn't this protocol since it seemed to start a few months after I started.

I know the going is slow, so I am trying to hang on and be stubborn. It is also hard to tell what is doing what since I am treating for POTS, Lyme, and mold...simultaneously. Don't know if I care as long as I get better. I just feel bad because I can't encourage you all here very much!

Ifish glad to hear about your family!! That is terribly exciting. I def would be interested in your daughters test results. I am thinking of having mine rechecked in a few months.

 

[Gingergrrl]

Okay @Gingergrrl, I'll do it on the biotoxins section.

How do I find it? I hope I have not already read it and forgot! Am really sick the last few days... Weeks... Months etc!

 

[Forebearance]

How do I find it? I hope I have not already read it and forgot! Am really sick the last few days... Weeks... Months etc!

You already read it and liked it, dear. lol Hope you feel better.

 

[leela]

You already read it and liked it, dear. lol Hope you feel better.

Could you post a link here when you have a chance, @Forebearance , because I think many of us might be interested to read it.
Again and again

 

[Skiii]

That is such a wonderful update, iFish! So happy for your daughter!

 

[Skiii]

I am really struggling with the protocol and feeling discouraged. It seems like 2 steps forward, one and a half back. Every time I start to get consistent with it, I then get crazy nasal irritation again, can't breathe out of my nose for 24 hours, and have lingering stuffiness for a week and can't do the treatment again. Every day being a rollercoaster of trying to manage symptoms- overwhelming fatigue every morning, irritability, anxiousness, stuffiness. Rashes and breaking out. Add to it the extra 20 lbs I've shot up since starting it so I'm now very unhappy with body.

I'm really wondering if there's a better way. At this point I'm getting desperate enough to consult with an ENT. Maybe if they could get even 75% of the crap out of there, I'd be able to tackle it. Or maybe I focus on binders and saunas first, get rid of the stored up toxins, then tackle sinus stuff.

Then I think I just need to be better about the nasal steroids and sinus rinses. :/

I go back for an appointment in a few weeks.

 

[Ifish]

I am really struggling with the protocol and feeling discouraged. It seems like 2 steps forward, one and a half back. Every time I start to get consistent with it, I then get crazy nasal irritation again, can't breathe out of my nose for 24 hours, and have lingering stuffiness for a week and can't do the treatment again. Every day being a rollercoaster of trying to manage symptoms- overwhelming fatigue every morning, irritability, anxiousness, stuffiness. Rashes and breaking out. Add to it the extra 20 lbs I've shot up since starting it so I'm now very unhappy with body.

I'm really wondering if there's a better way. At this point I'm getting desperate enough to consult with an ENT. Maybe if they could get even 75% of the crap out of there, I'd be able to tackle it. Or maybe I focus on binders and saunas first, get rid of the stored up toxins, then tackle sinus stuff.

Then I think I just need to be better about the nasal steroids and sinus rinses. :/

I go back for an appointment in a few weeks.

Sorry you've had so much difficulty. I had similar problems until I cut back to Nystantin and Chelating Px every other day. Although I might now be able to do it every day, I'm just keeping the same pace. The trick seems to be finding the sweet spot. Brewer has indicated he has patients improving on Nystantin without the Px.

I believe Brewer would advise to do the opposite of what you propose. Find a sustainable nasal treatment then focus on adding the sauna when you are able to handle it.

Of course there could be a bacterial infection going on. If so, you might need to focus on that first.

 

[Gingergrrl]

Could you post a link here when you have a chance, @Forebearance , because I think many of us might be interested to read it.
Again and again

That would be great for people like me who apparently read it but do not remember how to find it!