Detection of Mycotoxins in Patients with CFS

[David.B]

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?

I have been just rinsing it off. I had a bit of a crash this week. But I have been off treatment for over a week. Tonight I will start the Nystatin.

I was on Ampho for almost 8 weeks.

 

[dannybex]

After many, many consultations, months of research and a failed remediation attempt I hired a company that does an elaborate remediation that centers around the use of an enzyme based product called TM-100. It was expensive, but a better alternative than selling our house and attempting extreme mold avoidance.

IFish -- do you know if by any chance that enzyme product is available for sale, say in one gallon bottles, to use for example to deep-clean carpeting? Sounds like it was quite effective…

 

[Ifish]

IFish -- do you know if by any chance that enzyme product is available for sale, say in one gallon bottles, to use for example to deep-clean carpeting? Sounds like it was quite effective…

Sorry, dannybex, I checked with the company that did mine and it is available commercially only. There might be something similar out there. I know it is a two part product. One part is an enzyme and the other, I believe is some sort of surfactant.
I would urge you to do an ERMI test before you do anything. In my case I would have thought my first remediation was effective, however the ERMI showed me it was not. It might even show no remediation is needed. The price has gone down quite a bit the last several years and now. EMSL now does it for $165 http://moldinspectionkit.com/

 

[Ifish]

It appears we have reached another milestone. Prior to starting the protocol my 18 years old daughter was nearly housebound. She had severe fatigue and malaise. She had several distinct neurological issues including a high level of anxiety and sensitivity to light, sound and motion. Traveling in a car made her nauseous. She had issues with her bladder and bowels. She was not able to leave the house very often and could not go very far. When she did leave the house she had to take medications just to be able to go a short distance including an anti-nausea medication and anti-anxiety medication.

It is now clear she is better than she was prior to starting the protocol. Her activity level is on the rise. In the last few weeks she has been able to leave the house with increasing frequency. Her neurological symptoms are clearly diminished. She is able to go on short trips without the aid of her anti-nausea medication and anti-anxiety medication. Her malaise is better. Her bladder and bowels are better. She has been very reluctant to believe that any treatment could help her. She has been through so many, with so much disappointment. Yet she now has stated, without prompting, she is feeling better.

She still is quite ill and a very long way from normal. Time will tell how far this will take her, but her improvement is very distinct.

Our family is still in a struggle, but right now our path is clear. The whole atmosphere here better than it has been for many years.

My daughter's improvement has been very gradual, but I'd say it has taken her about 11 weeks to become better than she was prior to the start of the protocol. So for the three of us the range has been about 8 to 11 weeks.

 

[soulfeast]

This is very good to hear, Ifish. Congratulations to you and your family! I know this has to be a huge relief.

I have been on the protocol with the addition of two antibiotic sprays for over two weeks. I have not crashed very badly, yet. I do have a sore throat and am getting a good deal of bloody mucus (fresh blood). This stuff makes my nose very sore.

My legs are again lighter.. my arms are lighter to. this may come in cycles and seems connected to the sinus protocol or the gastrocrom (for mast cells) that I am concurrently ramping up on. Some days I think it's one then other days, I think the other.

(May need to clarify here.. my arms and legs are generally "heavy" some days more than others, but always some sort of heaviness, especially in legs.. this lighter feeling feels like some sort of inflammation has lifted. It feels wonderful.)

Curious if you all have had the bloody sore nasal passages and have had success dealing with this. I can't imagine doing twice a day just due to this.

It appears we have reached another milestone. Prior to starting the protocol my 18 years old daughter was nearly housebound. She had severe fatigue and malaise. She had several distinct neurological issues including a high level of anxiety and sensitivity to light, sound and motion. Traveling in a car made her nauseous. She had issues with her bladder and bowels. She was not able to leave the house very often and could not go very far. When she did leave the house she had to take medications just to be able to go a short distance including an anti-nausea medication and anti-anxiety medication.

It is now clear she is better than she was prior to starting the protocol. Her activity level is on the rise. In the last few weeks she has been able to leave the house with increasing frequency. Her neurological symptoms are clearly diminished. She is able to go on short trips without the aid of her anti-nausea medication and anti-anxiety medication. Her malaise is better. Her bladder and bowels are better. She has been very reluctant to believe that any treatment could help her. She has been through so many, with so much disappointment. Yet she now has stated, without prompting, she is feeling better.

She still is quite ill and a very long way from normal. Time will tell how far this will take her, but her improvement is very distinct.

Our family is still in a struggle, but right now our path is clear. The whole atmosphere here better than it has been for many years.

My daughter's improvement has been very gradual, but I'd say it has taken her about 11 weeks to become better than she was prior to the start of the protocol. So for the three of us the range has been about 8 to 11 weeks.

 

[Ifish]

Curious if you all have had the bloody sore nasal passages and have had success dealing with this. I can't imagine doing twice a day just due to this.

We didn't have too much bleeding, but had a lot of problems with congestion and massive mucous production and sore throats. I also had a hacking cough that lasted maybe a couple weeks. The way we dealt with this was to take a day off here and there to let things calm down. My wife would get to the point she couldn't breathe through her nose but a day off typically would make it better.

 

[soulfeast]

We didn't have too much bleeding, but had a lot of problems with congestion and massive mucous production and sore throats. I also had a hacking cough that lasted maybe a couple weeks. The way we dealt with this was to take a day off here and there to let things calm down. My wife would get to the point she couldn't breathe through her nose but a day off typically would make it better.

Thanks, Ifish. I am now rinsing before treatment (in am) with nasopure packet and xylitol. This seems to help. But, I am getting brain inflammation with some treatments. I am wondering if you have heard of others having this issue? I have it with sinus flares anyway and I think there is a mast cell component to this so will try nasalcrom spray and see if it helps. This inflammation started back years ago while being exposed. My sinuses flare up with a non-stuffy inflammation and this inflammation seems to travel up to frontal lobe of brain. Clearing my sinuses can help. I am taking mucinex twice daily.. maybe I need to irrigate with baby shampoo to get this stuff out.

 

[Ifish]

Thanks, Ifish. I am now rinsing before treatment (in am) with nasopure packet and xylitol. This seems to help. But, I am getting brain inflammation with some treatments. I am wondering if you have heard of others having this issue?

I have this brain inflammation issue also, just as you describe. I have had it for years. At times, it is absent and I feel better. It seems to be improving over all. When it is going on, there does not seem to be anything that will immediately make it better.

 

[dannybex]

I have this brain inflammation issue also, just as you describe. I have had it for years. At times, it is absent and I feel better. It seems to be improving over all. When it is going on, there does not seem to be anything that will immediately make it better.

Have you seen the thread that Hip started about anxiety? He found that taking n-acetylglucosamine helped big time, and theorizes that it helped because it reduced overall inflammation:

http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

I've had increasing anxiety the past 2-3 months or so, just unbearable lately, so I restarted the NAG just today, and while this is definitely preliminary, it seems to have reduced my sinus inflammation, and my anxiety as well. Will be heading back to the docs in 3 weeks to see if she thinks I can proceed with the Brewer protocol.

 

[soulfeast]

I have this brain inflammation issue also, just as you describe. I have had it for years. At times, it is absent and I feel better. It seems to be improving over all. When it is going on, there does not seem to be anything that will immediately make it better.

Very interesting. Thank you. I've had one other person say she has the same kind of experience.. inflammation feels like it is traveling from sinuses to frontal lobe. When I have this, I have can have neuro symptoms like brain fog, light sensitivity, emotional swings. This does make me think mast cells are involved. I've had this inflammation seemingy come out of no where.. but I am wondering if other mast cell triggers are triggering the mast cells to flare (food, stress... I've felt this happen with stress, chemicals and most certainly exposures to mold). There have been times that this has happened and once I cleared a thick mucus plug, it goes away.. Other times, it takes days. Sometimes Atarax or Benadryl help.

 

[Christopher]

Sorry, dannybex, I checked with the company that did mine and it is available commercially only. There might be something similar out there. I know it is a two part product. One part is an enzyme and the other, I believe is some sort of surfactant.
I would urge you to do an ERMI test before you do anything. In my case I would have thought my first remediation was effective, however the ERMI showed me it was not. It might even show no remediation is needed. The price has gone down quite a bit the last several years and now. EMSL now does it for $165 http://moldinspectionkit.com/

Did you go through a complete purge of all possibly contaminated items?

 

[acer2000]

I just did this test and it came back negative. There was a slight blip on the Tricothecenes section, but i guess not passed the threshold of being positive?

 

[Ifish]

Did you go through a complete purge of all possibly contaminated items?

We did not. I looked at all the evidence I could find. I consulted with a number of different people. We decided there just wasn't enough evidence to discard things, especially with so many people who have done it and didn't really benefit. So far it looks like the right decision. The treatment has made us better. The remediation did not, even though it seems completely successful, even after 19 months.

 

[Ifish]

I just did this test and it came back negative. There was a slight blip on the Tricothecenes section, but i guess not passed the threshold of being positive?

Brewer has had a number of patients that tested negative and retook the test and was positive. I think it is worth a repeat.

 

[redaxe]

Hi all, my $0.02.

This study is of interest to me also. I used to be on monthly allergy desensitization injections for cat & dust mites which caused respiratory symptoms but since with CFS and having to move I haven't bothered to keep up with it.
Now I noticed that my dustmite & cat allergies have been increasing lately. Yet I notice that when I have IV Vitamin C therapy I get immediate relief from these allergies that seems to persist for several days. The same effect seems to help me by giving me an energy & brain boost.
So it certainly seems to me that IV Vitamin C seems to give the immune system temporary relief.

I have also noticed that the same effect happens when I go camping (one of my hobbies is Gold & Gemstone prospecting) - which I always look forward to because I get a huge relief from my CFS symptoms even camping for one night. Despite the fact that I've sometimes camped forgetting to bring a pillow on a hard uncomfortable ground I feel more refreshed in the morning than I do having slept in a comfortable bed at home!!!
I can also relate that the house I was living in when my illness started did have some past water damage & some internal mold.
The other day I was thinking about this and I actually tested myself by taking a high dose of anti-histamines and I felt like I got quite a positive reaction from them. I need to trial this more to see if it is the antihistamines that produce the effect. I haven't discussed this with my CFS doctor yet but it seems to me that these are all clues that something is aggravating my immune system and contributing to poor energy. I suspect this could be mold.

Perhaps toxic mold is one of the things that causes the immune system to create inflammatory cytokines that causes our "wake-up feeling trashed" experience and depletes our B vitamins & antioxidants leaving Mitochondria exposed to oxidative damage?

Just an update from this earlier post I made.
Well I just got my urinary mycotoxin test done. I had to fly to Brisbane to get the test organised - apparently in Australia it seems there are only 1 or 2 doctors in the entire country that are familiar with treating patients with mold poisoning and the diagnostic testing done by RealTimeLabs.

And yes it came back positive. I forget the name of the mycotoxin but it was the one associated with mold infested water-damaged buildings. So I guess that confirms that I also fit into the 'CFS' mold hypothesis that this study investigated. Hopefully next week I can start a detox therapy.
So that in some ways is a huge relief - I feel completely vindicated now, I actually have successfully discovered the cause of why I have been feeling like absolute shit for the last 18 months! So no longer do I need to feel ashamed of my situation, this is proof that I am not imagining things and I am not losing my marbles.

 

[Ifish]

My wife and I took our 18 year old to see Dr. Brewer. Much has happened in the three months since we saw him last. We covered a significant amount of information which I plan to post, but I will need to do that in installments.

RealTime Labs has formed a scientific committee with eight members. All are MDs or PhDs. Brewer is on this committee. They have collected data on approximately 300 patients. Of this number Brewer has attempted to treat approximately 150 patients on the AmphoB/Chelating Px combo. About 1/3 could not consistently stay on it due to side effects from the AmphoB, including nose bleeds. (He is developing alternatives - more on this later).

Of the remaining 2/3 (approximately 100 patients) 94% have reported improvement and approximately 25% have returned to normal. These patients have been on the protocol on average about 6 months. The 6% that did not improve are not necessarily lost causes. Some might need more time, some might have bacterial infections holding them back. (Brewer believes that antibiotic resistant staph infections may be involved in many patient - more on this later).

Brewer will use this data to publish another paper. This might happen within the next couple of months or so. He recognizes that it will fall short as far as a lot of folks are concerned, since it is not a blinded study and improvement is measured subjectively. One thing that will be measured and reported scientifically is a drop in mycotoxin levels due to this treatment. This drop in mycotoxin level corresponds directly to improvement in reported symptoms.

He has discovered that it can take a very long time for extremely ill patients to improve. He recently saw a patient who had a slight, if any, improvement at six months.(This patient had been bed ridden with extreme abdominal symptoms including vomiting several times a week.) At one year on the treatment the patient is 50 to 60% improved and is continuing to improve.

We reviewed my daughter's laundry list of symptoms including anxiety, nausea, sensitivity to light, sound and touch and bladder and gastrointestinal discomfort. All of these issues have improved in one patient or another. Some patients have experienced a complete resolution of these type of symptoms.. Therefore, there exists a possibility of improvement in all these areas. (In fact my daughter did report improvement in some of these symptoms)

Six of Brewer's patients who became well attempted to discontinue treatment. All gradually relapsed over a long period of time but improved again upon retreatment. He does not know how things would be handled long term. Maintenance dosing might be required or the mold colonization might be completely eradicated if treated long enough.

 

[Forebearance]

Thank you so much, ifish. Your reports are really valuable to me!

 

[Christopher]

My wife and I took our 18 year old to see Dr. Brewer. Much has happened in the three months since we saw him last. We covered a significant amount of information which I plan to post, but I will need to do that in installments.

RealTime Labs has formed a scientific committee with eight members. All are MDs or PhDs. Brewer is on this committee. They have collected data on approximately 300 patients. Of this number Brewer has attempted to treat approximately 150 patients on the AmphoB/Chelating Px combo. About 1/3 could not consistently stay on it due to side effects from the AmphoB, including nose bleeds. (He is developing alternatives - more on this later).

Of the remaining 1/3 (approximately 100 patients) 94% have reported improvement and approximately 25% have returned to normal. These patients have been on the protocol on average about 6 months. The 6% that did not improve are not necessarily lost causes. Some might need more time, some might have bacterial infections holding them back. (Brewer believes that antibiotic resistant staph infections may be involved in many patient - more on this later).

Brewer will use this data to publish another paper. This might happen within the next couple of months or so. He recognizes that it will fall short as far as a lot of folks are concerned, since it is not a blinded study and improvement is measured subjectively. One thing that will be measured and reported scientifically is a drop in mycotoxin levels due to this treatment. This drop in mycotoxin level corresponds directly to improvement in reported symptoms.

He has discovered that it can take a very long time for extremely ill patients to improve. He recently saw a patient who had a slight, if any, improvement at six months.(This patient had been bed ridden with extreme abdominal symptoms including vomiting several times a week.) At one year on the treatment the patient is 50 to 60% improved and is continuing to improve.

We reviewed my daughter's laundry list of symptoms including anxiety, nausea, sensitivity to light, sound and touch and bladder and gastrointestinal discomfort. All of these issues have improved in one patient or another. Some patients have experienced a complete resolution of these type of symptoms.. Therefore, there exists a possibility of improvement in all these areas. (In fact my daughter did report improvement in some of these symptoms)

Six of Brewer's patients who became well attempted to discontinue treatment. All gradually relapsed over a long period of time but improved again upon retreatment. He does not know how things would be handled long term. Maintenance dosing might be required or the mold colonization might be completely eradicated if treated long enough.

Is there another 1/3 I'm not seeing? 1/3 had side effects, and 1/3 improved.

 

[Ifish]

Is there another 1/3 I'm not seeing? 1/3 had side effects, and 1/3 improved.

Hey thanks. I fixed the mistake.

 

[Christopher]

Hey thanks. I fixed the mistake.

wow, 2/3, that's quite a lot.