Detection of Mycotoxins in Patients with CFS

[Soundthealarm21]

@JCamp

Are you 100% positive there is no bad mold in your home right now?

Was it tested? How was it tested?

 

[Forebearance]

Hang in there, JCamp!
I understand how angry it must make you to have committed so strongly to a treatment that ended up hurting more than it helped. That is a terrible experience to have to go through! Grief is sure understandable.

Remember that you're always going to be the ultimate authority on your own body, no matter what some doctor says. Doctors can help us, but getting well from this illness is somewhat of a do-it-yourself project.

Vertigo and strong emotions could possibly be caused by die-off. If they continue to happen, and if they impair you more than you would like, you could always adjust your dose of Nystatin by taking less of it or taking it less often. "First do no harm" is more than a doctor's oath. It's also my oath to myself.

I found that Nystatin taken with the NasaTouch has a big dosage zone where it helps but doesn't hurt me at all. GcMAF, on the other hand, had a tiny, tiny zone where the dosage was enough to help but not so much that it hurt me. It was very tricky for me to get a small enough dose of it, and in the end I decided it wasn't worth it.

 

[JCamp]

Thanks, everyone. I appreciate your kind words. I'm better emotionally today...what a roller coaster!

I'm as certain as I can be that my new place does not have mold. I do not have the means (financially, physically, or cognitively) to continually retest.

Onward!

 

[Skiii]

I didn't see this until now, best of luck JCamp. I hope you see the light! I'll echo Forebearance and say that it could be die-off (I get crazy anxiety) and that you could try adjusting how often you do it.

 

[Skiii]

I'm curious what anyone's doctors say about using aspartame. I mean, I know it's not good for you in the long run, and I try to avoid the burden of chemicals in my diet, but with that said... with multiple studies listed on PubMed showing that it reduces the absorption of these carcinogenic/neurotoxic/nephrotoxic mycotoxins floating around in us... maybe it's a good addition for the short term? I mean, other people drink tons of diet soda every day. Maybe this is a case where it does more good than harm?

 

[Skiii]

Also, I'm not sure how to word this, because I'm not looking for an answer. I know there's no way to calculate it. I guess I'm just wondering if anyone else thinks about (or tries not to think about, for that matter) what increase this all has on us for the long term. I mean, carcinogenic mycotoxins in my system for 10 years... that can't lend any favors in terms of eventual cancer. Then I started reading about how all these enriched foods containing folic acid increase cancer risks for people with MTHFR mutations since we can't process it and end up with more free radicals...

The silver lining I guess being that we are all proactive about our health, versus all the other people walking around out there.

 

[Ifish]

Saunas Tied to Lower Risk of Heart Disease Death
WebMD News from HealthDay
By Dennis Thompson
HealthDay Reporter
MONDAY, Feb. 23, 2015 (HealthDay News) -- Sweating it out in a hot sauna may be relaxing, and new research suggests it may also be good for your heart health.
A study from Finland found that men who use saunas frequently are less likely to die from heart disease. Men's risk was even lower when they visited saunas more often in a week, and when they spent longer periods of time in a sauna each session, the researchers reported........
For the rest of the story: http://www.webmd.com/heart/news/20150223/study-ties-saunas-to-lower-risk-of-death-from-heart-disease
So I am wondering, could it be that the more you sauna, the more toxins you release, and therefore, the better your health? We've owned a sauna since 2010, but it has not been until now that we can consistently use it. I'm generally using the sauna five days a week. Not only is this the first time we have felt well enough to use it consistently, it is also the first time that using the sauna actually makes us feel better, rather than worse.
I believe we are now getting our mycotoxin production down low enough to tolerate releasing more toxins from the tissues. For the past couple of months I've had a lot of rashes and itchiness. I thought it was from medications and supplements, so I stopped them all for a while, but still have itching and rashes. This started even before the consist ant sauna use.

We wil reach the one year mark in less than a month. I hope to provide a detailed update in the weeks to come.

 

[psz]

For the past couple of months I've had a lot of rashes and itchiness. I thought it was from medications and supplements, so I stopped them all for a while, but still have itching and rashes.

Interesting, I also get itches and and an occasional rash with no change in meds.

 

[JCamp]

@Ifish - which sauna do you use?

I have a tent version but Brewer was favoring the dome styles when I met with him a couple weeks ago. After looking into it a bit, it does seem the domes expose much more of the body to the FIR. My tent really just gets my back and shoulders leaving my legs, front torso, and head not even close to the heaters (I'm now understanding that you want the FIR heaters within a few inches of your skin). But shelling out the $2,000 for the dome recommended by Brewer isn't an option at this point....

Thanks and looking forward to your update!

 

[mamakate]

It's been a while since I've checked this forum, and it took me a while to catch up!

My husband was doing AWESOME in January. He felt better than he has in years. He started Nystatin in May, I believe, so it was at about 8 months. However, at the beginning of February his nasatouch broke, and we ordered a new one, but with a shipping delay and waiting over the weekend, he went 5 days without doing the protocol. This unfortunately resulted in a major setback for him. He's now starting to do better again, but he isn't back to where he was in January. Still, we are hopeful that the really good days are coming again soon.

The only good thing about this setback was that it was a clear indication to us that the protocol is helping. He just can't skip too many days! It really stunk to have to go through all that hard core die-off again.

Oh, and we ended up buying a sauna, and he really thinks it helps. He tries to do it every day for 35 minutes.

Don't lose hope, everybody!

 

[Ifish]

@Ifish - which sauna do you use?

I have a tent version but Brewer was favoring the dome styles when I met with him a couple weeks ago. After looking into it a bit, it does seem the domes expose much more of the body to the FIR. My tent really just gets my back and shoulders leaving my legs, front torso, and head not even close to the heaters (I'm now understanding that you want the FIR heaters within a few inches of your skin). But shelling out the $2,000 for the dome recommended by Brewer isn't an option at this point....

Thanks and looking forward to your update!

We bought ours 5 years ago. It is a near infared sauna. I looked online and couldn't find the company we bought it from, but I did find something similar. I believe near infared is less expensive to buy. What we have is similar to the one found here:

https://saunaspace.com/wellness-shop/pocket-sauna/

 

[spindrift]

I'm curious what anyone's doctors say about using aspartame. I mean, I know it's not good for you in the long run, and I try to avoid the burden of chemicals in my diet, but with that said... with multiple studies listed on PubMed showing that it reduces the absorption of these carcinogenic/neurotoxic/nephrotoxic mycotoxins floating around in us... maybe it's a good addition for the short term? I mean, other people drink tons of diet soda every day. Maybe this is a case where it does more good than harm?

My environmental medicine doctor knows that I "medicate" with aspartame. She never commented if she thought it was good or bad. Then again, I never asked. I believe there is just no research on it to make a statement of what happens on the long run.

 

[spindrift]

Also, I'm not sure how to word this, because I'm not looking for an answer. I know there's no way to calculate it. I guess I'm just wondering if anyone else thinks about (or tries not to think about, for that matter) what increase this all has on us for the long term. I mean, carcinogenic mycotoxins in my system for 10 years... that can't lend any favors in terms of eventual cancer. Then I started reading about how all these enriched foods containing folic acid increase cancer risks for people with MTHFR mutations since we can't process it and end up with more free radicals...

The silver lining I guess being that we are all proactive about our health, versus all the other people walking around out there.

Really don't wanna scare the heebee jeebees outta anyone, but here are some things I am paying attention to:

I am the third generation in my family to have ME. My grandma died of "organ failier" at 75, she had every ME symptom in the book.

My mother, who also had ME symptoms, died of benign brain tumor on her right frontal lobe at 72. The tumor was cut away two times but kept growing back. Interestingly, we all also have a deviated septum in our nose not allowing us to get as much air through the right nostril. My sister (who has ME too and is also blessed with our deviated septum) and I both have more ME symptoms on our right side. I speculate that more mycos get "stuck" in our right sinuses and go through the olfactory bulb into our brain causing more inflammation on the right side of our brain and giving us more symptoms on our right side in our whole body.

Both my grandmother and mother had extremely large benign tumors on their uterus. My grandma's was so bad that at that time they could not remove it surgically. I speculate that zearalenone mycos, which target estrogen receptors, were the cause. My mother's sister (who also has ME) who did hormone replacement therapy with estrogen during menopause and at 73 now, does not have any large tumor on her uterus. This makes me further speculate that the less estrogen we have, the more free estrogen receptors there are for zearalenone mycos to attach to.

Interestingly, no one on the ME side of my family had cancer.

And here is a REALLY crazy one: My badly infested apartment had mostly fusarium mold in it. Zearalenone mycos which target estrogen receptors are made by fusarium. Every time I get in touch with something that was contaminated in that apartment, my hormones go wacko and I immediately start to cry, even though there is absolutely nothing wrong; ya know kinda like having PMS. I have since dubbed zearalenone mycos, cryomycos. My friends now laugh every time I get hit by cryomycos and if I start crying outta the blue we just wait until it wears off.

I try to monitor the things that run in my family. It is really helpful to have my family's medical history.

 

[Forebearance]

My husband was doing AWESOME in January. He felt better than he has in years. He started Nystatin in May, I believe, so it was at about 8 months. However, at the beginning of February his nasatouch broke, and we ordered a new one, but with a shipping delay and waiting over the weekend, he went 5 days without doing the protocol. This unfortunately resulted in a major setback for him. He's now starting to do better again, but he isn't back to where he was in January. Still, we are hopeful that the really good days are coming again soon.

I'm sorry to hear about this, mamakate, but also glad that your husband can catch up again.

A similar thing happened to me recently. Circumstances prevented me from using my NasoTouch for six days, instead of my usual four. I began to feel as bad as I did before I started this protocol. When I got some Nystatin into me again, I got relief. Although it will probably take some more doses to get caught up to where I was.

You know, Skiii, I once heard someone refer to ME/CFS as the body's own natural chemotherapy. As if our bodies are trying to prevent us from getting cancer.

I've had a couple itchy rashes since starting this protocol, too.

 

[foxy loxy]

yikes! I am here in mexico for lyme treatment and can't find distilled water yet! I have been off my nasa touch protocol for close a week! Thankful I read about the relapses... I had better get back on this..

 

[Forebearance]

yikes! I am here in mexico for lyme treatment and can't find distilled water yet! I have been off my nasa touch protocol for close a week! Thankful I read about the relapses... I had better get back on this..

I think you can also use bottled water. Good luck!

 

[foxy loxy]

Thanks Forebearance! I found bottled water for infants... interestingly enough the one dr. down here really thinks my mold infection could be giving me my neurological nose symptoms and keeping my immune system down so I can't get over Lyme. I really do think I will keep up with this! I have a slightly swollen right gland and she said the sinuses and glands are connected?

 

[waiting]

Fascinating posts by a new member, who has experienced incredible recovery after Tx with Rituxan and Methotrexate (and IVIG).

I am linking to her thread from this one because the original problem that sent her to this Standord DR (who specializes in immunodeficiency) was widespread fungus.

http://forums.phoenixrising.me/inde...reatment-that-worked.36240/page-2#post-572858

I posted a link from that thread to this one as well.

 

[andjo]

An interesting article from 2015 written by Gary Rosen that takes up some valid points regarding the RTL mycotoxin testing. Well worth a read!

http://www.mold-toxins.com/assets/Urine Testing for Mycotoxins - Junk Science or Not 2-22-15.pdf

 

[Ifish]

An interesting article from 2015 written by Gary Rosen that takes up some valid points regarding the RTL mycotoxin testing. Well worth a read!

http://www.mold-toxins.com/assets/Urine Testing for Mycotoxins - Junk Science or Not 2-22-15.pdf

I don't have the expertise to argue the science, but here is some food for thought. Everything in the mold world is contentious. There is a lot of litigation and therefore a lot of expert witness available, including Rosen: http://www.mold-free.org/GaryRosen-PhD-CV2.pdf These individuals set up websites with articles that take a certain position which attract lawyers who need an expert to support his or her position. Here is Rosen's http://www.mold-toxins.com/

He is not a neutral scientist trying to find the truth to help the public. He is very much in the industry, not only as a hired gun, but also as a mold remediator and many other related services: http://www.mold-free.org/index1.html

In the article, Rosen takes the position that the RTL's mycotoxin testing is invalid and that what it really shows, if anything, is mycotoxins from food. Yet he has written several books that support the position that mold produces mycotoxins which cause illness. http://www.mold-free.org/index1.html. I have a copy of the book he coauthored entitled "Your Guide to Mold Toxins". His positions in the book were very consistent with Shoemaker. Interestingly, on the one hand he takes a rather unprofessional sarcastic shot at Brewer for offering treatment for mold growing in the sinuses, while on the other hand Rosen offers services for remediation for mold growing in buildings. So what he is saying is that if you are sick from mold you don't need to treat mold growing in your body, instead you need to have your home inspected, tested and remediated which are services he can provided, and if you want to just sell it, he can do that too, since he is also a realtor.

In contrast, Brewer is not gaining new patients due to the fact he is using his mold sinus treatment. Right now it is a six month wait for current patients to see him. I have had many appointments that lasted an hour. He is an in-network doctor that makes whatever insurance pays. He could go out of network and charge pretty much whatever he wants, but he doesn't. He could make an fortune if he did that. He is not selling books. If he is making extra money from the mold sinus treatment I don't know how.

The RTL test presents a major problem for people like Rosen, Shoemaker, Shaller and others who committed to the position that mold illness is a detox issue. If the test is accurate, it shows that people with mold illness can detox just fine and that the issue lies with production of mycotoxins within that body. So Rosen and others have a vested interest in attacking the test itself.