Detection of Mycotoxins in Patients with CFS

[detts]

Are they results from air sampling?

Dust sample taken from the air vent.

 

[Akhess01]

IFish- just want to thank you for your continued posts. You don't know how much I appreciate all of your info and updates.

I am traveling 7 hours next weekend so I an see a doc that is familiar with the Brewer protocol. Truly hoping he will start me on it as I too have tried everything short of voodoo to get well over the last 10 years ie; Shoemaker, binders, detoxes, ivs, sauna, methylation protocols, parasite tx, juicing and the list could go on forever. I'm very excited with the new theory as binders did nothing for me. I saw Shoemaker in 2006 and started his protocol. Over a year later I saw another doc who did the rtl. My trich level was 10.87-highest he had ever seen.

Question for anyone on the protocol: I mentioned to my pop when I went in for my yearly what my plans were. He referred to ampho b as ampho terrible and told me to make sure and ask if there were kidney/liver tests I needed to have run while on the protocol. Anyone heard this or maybe the protocol uses such a low dose it is of no concern?

Thanks!

 

[Akhess01]

*pcp not pop

 

[waiting]

Dust sample taken from the air vent.

That's good -- was the lab Mycometrics or RTL perhaps? And, if you already said this, sorry for asking again, but did you also do RTL's urine test? I was wondering if you found the same mycotoxins in you as in the environment.

 

[detts]

That's good -- was the lab Mycometrics or RTL perhaps? And, if you already said this, sorry for asking again, but did you also do RTL's urine test? I was wondering if you found the same mycotoxins in you as in the environment.

It was RTL and I did do the urine test 3 months ago - tricothocene level 0.88 ppb

 

[trev343]

IFish- just want to thank you for your continued posts. You don't know how much I appreciate all of your info and updates.

I am traveling 7 hours next weekend so I an see a doc that is familiar with the Brewer protocol. Truly hoping he will start me on it as I too have tried everything short of voodoo to get well over the last 10 years ie; Shoemaker, binders, detoxes, ivs, sauna, methylation protocols, parasite tx, juicing and the list could go on forever. I'm very excited with the new theory as binders did nothing for me. I saw Shoemaker in 2006 and started his protocol. Over a year later I saw another doc who did the rtl. My trich level was 10.87-highest he had ever seen.

Question for anyone on the protocol: I mentioned to my pop when I went in for my yearly what my plans were. He referred to ampho b as ampho terrible and told me to make sure and ask if there were kidney/liver tests I needed to have run while on the protocol. Anyone heard this or maybe the protocol uses such a low dose it is of no concern?

Thanks!

In 2006 Shoemaker still had a lot to learn with his protocol, are you sure you didnt have Marcons or something else hindering you?

 

[Skiii]

Question for anyone on the protocol: I mentioned to my pop when I went in for my yearly what my plans were. He referred to ampho b as ampho terrible and told me to make sure and ask if there were kidney/liver tests I needed to have run while on the protocol. Anyone heard this or maybe the protocol uses such a low dose it is of no concern?

Yeah my primary said the same thing, but no worries. less than 5% gets into your system doing it this way. It even says that on the instructions that come with it, that if you read about amphoB it will sound terrifying, but not to worry about this treatment since it mostly stays within your sinuses.

 

[Skiii]

How much was the environmental sampling from RTL?

I still haven't had my house tested, is that the best one to do?

 

[detts]

It was $299 for one sample - so I decided to do it from the air vent. It costs $299 per sample so if you were testing various parts of the house that can get pricy- that's why I did it from the air vent. Not sure which lab is best but as I had done the urine test with them previously I stuck with them for the dust test.

I ran a qtip ,which they provided, along the vent to collect dust so it was very easy process.

 

[Ifish]

IFish- just want to thank you for your continued posts. You don't know how much I appreciate all of your info and updates.

I am traveling 7 hours next weekend so I an see a doc that is familiar with the Brewer protocol. Truly hoping he will start me on it as I too have tried everything short of voodoo to get well over the last 10 years ie; Shoemaker, binders, detoxes, ivs, sauna, methylation protocols, parasite tx, juicing and the list could go on forever. I'm very excited with the new theory as binders did nothing for me. I saw Shoemaker in 2006 and started his protocol. Over a year later I saw another doc who did the rtl. My trich level was 10.87-highest he had ever seen.

Question for anyone on the protocol: I mentioned to my pop when I went in for my yearly what my plans were. He referred to ampho b as ampho terrible and told me to make sure and ask if there were kidney/liver tests I needed to have run while on the protocol. Anyone heard this or maybe the protocol uses such a low dose it is of no concern?

Thanks!

By ampho terrible he is probably referring the delivery of ampho into the bloodstream via IV. In that case it is nasty stuff and very hard on the body. In the Brewer protocol the ampho is delivered to the nasal cavity in an atomized spray. Very little if any amphoB is absorbed into the bloodstream. However it can cause problems such as nosebleeds and irritation. Some patients cannot tolerate it and must switch to atomized nystantin.

 

[Forebearance]

Yeah, Akhess, because of reading this thread I was able to tell my pcp that it was a topical application of Ampho B, and that eased her concerns.

But I ended up getting Nystatin instead, because I tested negative on 2 RTL tests. I can now report that the Nystatin is doing something. If I can get the correct dose figured out, I think it will have good effects.

 

[detts]

Yeah, Akhess, because of reading this thread I was able to tell my pcp that it was a topical application of Ampho B, and that eased her concerns.

But I ended up getting Nystatin instead, because I tested negative on 2 RTL tests. I can now report that the Nystatin is doing something. If I can get the correct dose figured out, I think it will have good effects.

I am switching to Nystatin - the Ampho B is too hard to tolerate. What dose did you start out on? Does it take a long time to atomize and do you mix it with saline or anything?

 

[Akhess01]

In 2006 Shoemaker still had a lot to learn with his protocol, are you sure you didnt have Marcons or something else hindering you?

I treated with him through 2007 when I was hospitalized and after reviewing my records he diagnosed me with Addison's. I have since bee told I do not have Addison's. I stopped treating with him because he made promises to me that i wasn't even looking for. Face to face it was great. When I went home and had to do consults it was like talking to an entirely different person. Maybe it is because my labs weren't in yet and he didn't have the whole picture when we were face to face. Who knows no big deal at this point. I then moved on to Dr Gray who expands on the binder theory. He tested me for everything under the sun. Still didn't get better.
So, I can't say that shoe didn't come up with other txs.
When my cytokines level remained high he offered mean experimental tx. I forget what it was but it was risky and I opted out. I have stayed in contact with other patients watching his suggestions for them such as VIP and BEG. None of my friends had any good results with these. In my mind, I suppose, I see the basis of the protocol as binders and inability to detoxify. The csm, charcoal, clay, etc should have brought my levels down some.
My interest in the brewer protocol is because it is the first new take on this illness I have seen. I supposedly can't detoxify-dreaded gene- binders don't work...I'm screwed. If Brewer is right I have hope again. If he is wrong it's just another road trip and money washed down the drain. Bee there done that a million times over

 

[Akhess01]

By ampho terrible he is probably referring the delivery of ampho into the bloodstream via IV. In that case it is nasty stuff and very hard on the body. In the Brewer protocol the ampho is delivered to the nasal cavity in an atomized spray. Very little if any amphoB is absorbed into the bloodstream. However it can cause problems such as nosebleeds and irritation. Some patients cannot tolerate it and must switch to atomized nystantin.

Thanks fingers crossed that this dr will prescribe the protocol! Missouri here I come

 

[Akhess01]

In 2006 Shoemaker still had a lot to learn with his protocol, are you sure you didnt have Marcons or something else hindering you?

Oh- he did do a nasal swab on me that came back negative

 

[Forebearance]

I am switching to Nystatin - the Ampho B is too hard to tolerate. What dose did you start out on? Does it take a long time to atomize and do you mix it with saline or anything?

I'm using a couple sprinkles mixed with 15 ml of saline. Then I'm doing 4 sniffs of that in each nostril. I usually need to start out with less of everything than most people do. The cool thing is I think I've found a dose where it is helpful with no bad side effects. The sweet spot! Best wishes with your trial of it.

 

[trev343]

Im in some pretty good MOLDY Facebook groups if anyone wants in.

 

[Ifish]

We are about to hit the six month mark on the Brewer protocol. My last detailed report on progress was at the four month mark. What has stood out the most these last few weeks is the progress made by my youngest daughter who will turn 19 next month. My daughter has battled ear and sinus infections throughout her life. In January 2008, while in the 6th grade she underwent a balloon sinuplasty procedure which caused a permanent crash. She has never been able to return to school since then with the exception of a few weeks of part time school in 2010. For the last four years, she has not even been able to tutor at home.

My daughter has been continually doing one treatment or another since her crash. She was treated for lyme and coinfections for several years. In 2009 she did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. She has done many CFS related protocols, including protocols for mitochondrial dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, IV vitamin C, Meyers cocktails, detox IVs, etc. Prior to starting the Brewer protocol she had gone through two different protocols for mold detoxification and treatment. None of these treatments have resulted in significant benefits

My daughter suffers from extreme fatigue and malaise. She has chronic sinusitis (requiring several surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. She has issues with her gut and bladder and suffers from nausea and anxiety.

By early 2014 her symptoms left her nearly home bound and able to do very little. She would often go a week without leaving our house (usually for doctor appointments). When she did leave the house it would require a great deal of planning and preparation. She would have to take anti-anxiety medication, anti-nausea medication, a cold pack, a vomit bag, among other things. She could only travel a few miles at a time.

I reported two months ago that my daughter was better but it was not a profound improvement and that she had small windows of feeling better. Since then the windows have become bigger and more and more frequent. She is now able to leave the house almost every day and often multiple times per day. Lately she has been able to leave the house without the aid of anti-nausea and anti-anxiety medications. She has obtained a learners permit and is practicing driving on most days.

My daughter has been going to restaurants, shopping, ice skating, and bike riding. She went on a 40 minute car trip with only one stop. All of her symptoms have improved, including the malaise, fatigue, anxiety, nausea, bladder and gut issues.

My daughter is now able to concentrate enough to read books more often, and seems to be busy all of the time. She has a very very long ways to go, but after trying everything under the sun for nearly 7 years she is now experiencing solid improvement.

 

[waiting]

We are about to hit the six month mark on the Brewer protocol. My last detailed report on progress was at the four month mark. What has stood out the most these last few weeks is the progress made by my youngest daughter who will turn 19 next month. My daughter has battled ear and sinus infections throughout her life. In January 2008, while in the 6th grade she underwent a balloon sinuplasty procedure which caused a permanent crash. She has never been able to return to school since then with the exception of a few weeks of part time school in 2010. For the last four years, she has not even been able to tutor at home.

My daughter has been continually doing one treatment or another since her crash. She was treated for lyme and coinfections for several years. In 2009 she did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. She has done many CFS related protocols, including protocols for mitochondrial dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, IV vitamin C, Meyers cocktails, detox IVs, etc. Prior to starting the Brewer protocol she had gone through two different protocols for mold detoxification and treatment. None of these treatments have resulted in significant benefits

My daughter suffers from extreme fatigue and malaise. She has chronic sinusitis (requiring several surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. She has issues with her gut and bladder and suffers from nausea and anxiety.

By early 2014 her symptoms left her nearly home bound and able to do very little. She would often go a week without leaving our house (usually for doctor appointments). When she did leave the house it would require a great deal of planning and preparation. She would have to take anti-anxiety medication, anti-nausea medication, a cold pack, a vomit bag, among other things. She could only travel a few miles at a time.

I reported two months ago that my daughter was better but it was not a profound improvement and that she had small windows of feeling better. Since then the windows have become bigger and more and more frequent. She is now able to leave the house almost every day and often multiple times per day. Lately she has been able to leave the house without the aid of anti-nausea and anti-anxiety medications. She has obtained a learners permit and is practicing driving on most days.

My daughter has been going to restaurants, shopping, ice skating, and bike riding. She went on a 40 minute car trip with only one stop. All of her symptoms have improved, including the malaise, fatigue, anxiety, nausea, bladder and gut issues.

My daughter is now able to concentrate enough to read books more often, and seems to be busy all of the time. She has a very very long ways to go, but after trying everything under the sun for nearly 7 years she is now experiencing solid improvement.

That's incredible, @Ifish! How wonderful -- a very hopeful story for the rest of us. Thank you again for posting your experiences.

 

[Forebearance]

This is SO great! I am so happy for you, Ifish!