Detection of Mycotoxins in Patients with CFS

[Forgiveness]

I have been doing Dr Brewer's edta/nystatin treatment for about a month and one half. I have times were I feel better, but lately have been herxing like crazy, I am also started and combining it with lda/ldi treatment. I am VERY sensitive, but I am sure this mental craziness and herxing will pass. Anyone else out there in the same boat? Troy

 

[psz]

I'll post a more detailed report later, but just want to point out that for me consistent improvements only came after 4+ months on the protocol.

 

[Ifish]

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."

Andjo,
This is a yahoo group I belong to, but log on very infrequently: https://groups.yahoo.com/neo/groups/sickbuilding

This question came up and one of the members wrote Dr. Hooper asking him about the article. I can confirm that this is the same Dr. Hooper. He did write the member back and gave his side of the story. There is a file available with this group that has Hooper's letter along with other documents he provided. I did download that file and I would cut and paste the letter here, but I can't get that to work. If anyone more computer literate than I would like to contact me I'd be glad to forward the file. I think it would be good to post the letter.

You have every reason to be skeptical. This is all in very early stages. I am fortunate to be in a place of trust with Dr. Brewer after being his patient for many years. For me there is no doubt. Three members of our family will soon hit the one year mark and the fourth is nearing the ten month mark. We are all clearly better. I do plan to post a one year update when I have time to put it together.

It can take a very long time, even for someone who is not as ill. My oldest daughter is the least sick in my family. She is now in her first year of graduate school. It was not until the 9th month on the protocol that she started to show improvement, but it has happened and it is as clear as can be.

 

[Ifish]

Here is Hooper's letter.

 

[JCamp]

Hi everyone.

I just wanted to post that I spent two hours in an appointment with Dr Brewer this week. I hit the six month mark on daily ampho b/chelating px and did not see any improvement (actually I am much weaker from another six months of being mostly in bed). Dr Brewer and I agree that it's possible that my nasal side effects from the ampho were preventing the med from reaching the infected area. So, I have taken a few days off (and I already feel better in the sinuses) and then I'm switching to nystantin. I'm also taking at least a month off from the chelating px in case that was also causing problems (Dr. Brewer admits that many patients are improving with the antifungals alone -- without the biofilm agents).

One thing to note. We must have spent at least 30 minutes talking about sauna. Holy cow is he pushing this! I bought a tent sauna last November and I love it (the Therasage ps2002). I'm using it 2-5 times a week for 30 minutes. Dr Brewer wants me in it every day for a minimum of 10 minutes.

I haven't been able to read a lot of the recent posts here due to brain inflammation, but I notice some are skeptical of Hooper and the RTL assay. I've seen these comments before and like @Ifish, I too have built trust with Dr. Brewer and believe his excitement about how many patients are getting better.

I really, really hope I'm one of those patients soon. I'm ready to have a purpose to my life again -- and I can't keep managing caregivers and dog walkers! ;-)

I will post a longer update when able (and hopefully with a positive result!). Dr. Brewer and I also talked at length about methylation and genetics testing, leaky gut, depression, anxiety, and sleep. He is interested in it all but is laser focused on treating the obvious fungal infections at this point.

Take care, everyone. Stay warm!

 

[Forgiveness]

I'll post a more detailed report later, but just want to point out that for me consistent improvements only came after 4+ months on the protocol.

Were you able to get around, I can some, but down much of the time. Did you have Electro Magnetic Sensitivity as well?

 

[psz]

Were you able to get around, I can some, but down much of the time. Did you have Electro Magnetic Sensitivity as well?

I wasn't ever bedridden, but had severe fatigue, muscle weakness, peripheral neuropathy (this still lingers), digestive issues, cognitive impairment, joint and muscle aches etc. No EMF issues however.

Most up to 4 months of treatment it was really variable, lots of ups and downs, more downs than ups though.

After the 4 month mark, there are more up days than down days and the up days are really good while down days not as severe as before. This improvement has now lasted for 6 weeks (I've been on the protocol for 5.5 months in total).

I'm using the ampho + chelating px version of the protocol but switchin to nystatin in around two weeks.

All I can say to anyone is to have patience with this. I had been sick for over a year before starting the protocol so I know it can get hard having to wait months to see any improvement.

 

[Forgiveness]

I wasn't ever bedridden, but had severe fatigue, muscle weakness, peripheral neuropathy (this still lingers), digestive issues, cognitive impairment, joint and muscle aches etc. No EMF issues however.

Most up to 4 months of treatment it was really variable, lots of ups and downs, more downs than ups though.

After the 4 month mark, there are more up days than down days and the up days are really good while down days not as severe as before. This improvement has now lasted for 6 weeks (I've been on the protocol for 5.5 months in total).

I'm using the ampho + chelating px version of the protocol but switchin to nystatin in around two weeks.


All I can say to anyone is to have patience with this. I had been sick for over a year before starting the protocol so I know it can get hard having to wait months to see any improvement.

Very good my friend. My email is tdeancline@gmail.com I have been sick 30 years, bedridden for 6 months at one point, back to work then off again, still on SS. Had lyme (it's gone), radiation poisoning and much more, but mold is the main culprit, everything else was secondary and opportunistic in comparison.

The radiation was uranium exposure from working at a nuc plant 27 years, it took it's toll as well.

I started with the edta/nystatin, the 23rd will be 2 months. Thanks for your input, and may God richly bless you.

 

[Skiii]

@JCamp, when you get a chance I'm curious what you spent 30 minutes on talking about saunas!

 

[Skiii]

So, my naturopath doesn't accept insurance. And ASL doesn't work with my insurance for the treatments, and now my insurance changed it's policy for compounds and won't cover the compounded cholestyramine. So glad I have health insurance that won't actually cover me getting healthy

Might need to try clays or something else cheaper along with charcoal!

 

[Forgiveness]

Very good my friend. My email is I have been sick 30 years, bedridden for 6 months at one point, back to work then off again, still on SS. Had lyme (it's gone), radiation poisoning and much more, but mold is the main culprit, everything else was secondary and opportunistic in comparison.

The radiation was uranium exposure from working at a nuc plant 27 years, it took it's toll as well.

I started with the edta/nystatin, the 23rd will be 2 months. Thanks for your input, and may God richly bless you.

Very good my friend. My email is tdeancline@gmail.com I have been sick 30 years, bedridden for 6 months at one point, back to work then off again, still on SS. Had lyme (it's gone), radiation poisoning and much more, but mold is the main culprit, everything else was secondary and opportunistic in comparison.

The radiation was uranium exposure from working at a nuc plant 27 years, it took it's toll as well.

I started with the edta/nystatin, the 23rd will be 2 months. Thanks for your input, and may God richly bless you.

 

[out2lunch]

One thing to note. We must have spent at least 30 minutes talking about sauna. Holy cow is he pushing this! I bought a tent sauna last November and I love it (the Therasage ps2002). I'm using it 2-5 times a week for 30 minutes. Dr Brewer wants me in it every day for a minimum of 10 minutes.

JCamp,
I saw my doc earlier this week who knows Dr Brewer, and we also discussed getting my butt into an IR sauna on a regular basis. (My ochratoxins came back significantly elevated and CMS is something I can only do in moderation thanks to lifelong constipation woes. Simply watching Metamucil commercials invites trouble.)

I've been doing my homework, and the Therasage tent looks to be the clear winner. I've been using their IR heated pads every night while lying on my zero gravity foam wedges. These "healing pads" have been a godsend for my FM/MPS neck and back pain. Getting their tent sauna seems like a no-brainer.

But I have a couple of concerns that I hope you can shed some light on:

1) Does the tent material outgas at all? I have severe MCS, and some of the cheaper low-rent tent saunas apparently stink it up like crazy, according to reviews I've read at sites like Amazon, etc.

2) Would a short individual be tall enough to get their head outside the tent? The tech specs stated the tent was 33 inches tall, but I'm not sure how important that info is since they don't specify the height of the stool inside.

Thanks!

 

[JCamp]

@JCamp, when you get a chance I'm curious what you spent 30 minutes on talking about saunas!

@Skiii , we really didn't discuss anything that hasn't been already mentioned in this thread. He's just keen on sharing many patient stories and small study successes on using FIR for detoxing mycotoxins.

 

[JCamp]

JCamp,
I saw my doc earlier this week who knows Dr Brewer, and we also discussed getting my butt into an IR sauna on a regular basis. (My ochratoxins came back significantly elevated and CMS is something I can only do in moderation thanks to lifelong constipation woes. Simply watching Metamucil commercials invites trouble.)

I've been doing my homework, and the Therasage tent looks to be the clear winner. I've been using their IR heated pads every night while lying on my zero gravity foam wedges. These "healing pads" have been a godsend for my FM/MPS neck and back pain. Getting their tent sauna seems like a no-brainer.

But I have a couple of concerns that I hope you can shed some light on:

1) Does the tent material outgas at all? I have severe MCS, and some of the cheaper low-rent tent saunas apparently stink it up like crazy, according to reviews I've read at sites like Amazon, etc.

2) Would a short individual be tall enough to get their head outside the tent? The tech specs stated the tent was 33 inches tall, but I'm not sure how important that info is since they don't specify the height of the stool inside.

Thanks!

@out2lunch , there was out gassing the first time I used it. I was knocked flat (I'm also very chemical sensitive). But I ran it when I wasn't in the room two more times and then I was fine with it. There's no chem smell at all with it now.
As for a short person, I can't say -- I'm 5'11"! I think you'd be ok though. You could always stack towels on the stool to sit on.

Good luck and let us know how it goes!

 

[foxy loxy]

Here is Hooper's letter.

Hi people,
I have been following this thread for a while now. I have Lyme and co-infections along with elevated trichothecenes (.99 ppb is that bad?) and elevated Ochratoxin A (1.8 ppb ??) I wish I knew if these are really high or not?

I am almost three months into the protocol. I just went off IV Rocephin (been on it a year) and am not sure if I feel better because of that or the Brewer protocol?? Because of the encouragement here to give it time, I will stick at it and tell you all what happens!

My family Dr. is treating me because he heard Brewer at a Lyme conference. He told me to quit at three months if I didn't feel a difference, but now I think I should keep at it? Anyone else treating for Lyme along with the protocol and feeling a difference?

I have a lot of neurological head sensations (head pressure, sinus/nose area nerve gnawing, gut issues, anxiety, weird feelings etc.)

P.S. I worry about Hooper too!! I sure hope he is telling the truth, but thanks for posting his letter, Ifish. It made me feel a little, tiny bit better! You are helping a lot of people!

 

[JCamp]

Hey everyone. I want to make sure I have the nystatin instructions correct. I mix the capsule in the distiller water and let it set for 3 minutes, right? Then I transfer to the nasatouch atomizer, I think and dispense just like the ampho. How strict are you guys on the 3 minutes?

Thank you!

 

[Forgiveness]

Hi people,
I have been following this thread for a while now. I have Lyme and co-infections along with elevated trichothecenes (.99 ppb is that bad?) and elevated Ochratoxin A (1.8 ppb ??) I wish I knew if these are really high or not?

I am almost three months into the protocol. I just went off IV Rocephin (been on it a year) and am not sure if I feel better because of that or the Brewer protocol?? Because of the encouragement here to give it time, I will stick at it and tell you all what happens!

My family Dr. is treating me because he heard Brewer at a Lyme conference. He told me to quit at three months if I didn't feel a difference, but now I think I should keep at it? Anyone else treating for Lyme along with the protocol and feeling a difference?

I have a lot of neurological head sensations (head pressure, sinus/nose area nerve gnawing, gut issues, anxiety, weird feelings etc.)

P.S. I worry about Hooper too!! I sure hope he is telling the truth, but thanks for posting his letter, Ifish. It made me feel a little, tiny bit better! You are helping a lot of people!

Keep going, it takes much time to remove kill and remove toxins.

 

[Forgiveness]

Hey everyone. I want to make sure I have the nystatin instructions correct. I mix the capsule in the distiller water and let it set for 3 minutes, right? Then I transfer to the atomizer, I think and dispense just like the ampho. How strict are you guys on the 3 minutes?

Thank you!

I have not been real strict, but it is working.

 

[Forgiveness]

I am not going to leave this group, but have started a yahoo group for the sinus treatment if anyone is interested. https://groups.yahoo.com/neo/groups/nasalnystatin/info

 

[out2lunch]

@out2lunch , there was out gassing the first time I used it. I was knocked flat (I'm also very chemical sensitive). But I ran it when I wasn't in the room two more times and then I was fine with it. There's no chem smell at all with it now.

Thanks much for this info! I'll know to run it a few times without me inside, with my IQAir Multi-Gas on full speed nearby.

As for a short person, I can't say -- I'm 5'11"!

You're like a foot taller than me! "Look out! Low branch!" Obviously, there's no height problem for you!

I think you'd be ok though. You could always stack towels on the stool to sit on.

Ah, yes. The adult booster seat solution. Always a classic.

Good luck and let us know how it goes!

Will do. I'm going to order the tent sauna this weekend. Thanks again!