Detection of Mycotoxins in Patients with CFS

[Skiii]

Thanks boohealth. I'm not saying it's out of the realm of possibility, but my doctor and I both don't suspect it. I'm guessing it a whammy for me because a) I don't detox well- double homozygous for MTHFR, b) I had prior inflammatory disease, mono, as a child (found that on the Shoemaker FAQ), and c) because my sinuses weren't developed, the ENT described my sinuses passages as so narrow that anytime something irritated them like my allergies, they closed up creating a perfect warm moist breeding ground for bacteria (ahem, and mold).

Also my dr is a DO and Lyme expert, and he says he can almost always "feel" lyme in someone, and doesn't in me. Plus my symptoms and the timing are spot on. I'm one of the less-complicated cases, we think!

 

[Ifish]

I've been looking through this thread and it's very interesting. I haven't been exposed to mold recently but was in 2004. I think this might be too long ago to be an issue now. I fell ill with ME 14 months ago and, like many others, I have been trying to find possible pathology of this. I have never suffered with sinus issues until now and they're occur daily. I don't have an infection and antibiotics did nothing but I do get severe pressure/pain and blocked nose and post nasal drip. I also have a popping sound in nose and throat as if there are air bubbles trapped. Can anyone advise tests or treatment for this? Maybe I should get tested for mold. I thought about buying some Anti fungal medication to try. Have tried everything, At wits end!

Katyw,
Brewer has many patients that had an exposure many years ago yet tested positive for mycotoxins. He believes even a single exposure might be enough for the mold to colonize in the sinuses and therefore cause chronic illness. He told me about a patient with a single exposure 30 plus years ago with a recent positive mycotoxin test.
I think the Real Time Labs mycotoxin test is very important. It is also important to understand what types of treatment have been shown to be effective. It generally takes patients a very long time to show improvement. If you are thinking of going down this road you should find a doctor familiar with the test and protocol.

 

[Katyw]

Hi @Skiii Thanks for your message. The shoemaker list of symptoms are very similar to ME/CFS so it's very hard to know. I've been ill with me/CFS for 14 months now but wanted to see if this could bear any relevance to mold exposure back in 2004.

K

 

[Katyw]

Hi @Ifish - thank you for your message. Wow, I didn't know that. So if you've ever been exposed then it could be still in your system. The problem I have is that I live in England and don't have access to these tests! :-( could I ask you, is there a treatment protocol for this?

 

[redaxe]

Hi @Ifish - thank you for your message. Wow, I didn't know that. So if you've ever been exposed then it could be still in your system. The problem I have is that I live in England and don't have access to these tests! :-( could I ask you, is there a treatment protocol for this?

Send an email or customer message to RealTimeLabs (look up there website) and ask if they have any doctors that use their urinary mycotoxin testing in the UK. They seem very customer friendly, I'm sure they will be able to help you. If there are any doctors in the UK then they will give you their contact details.
The samples are shipped by airfreight but there is a bit of a procedure in doing it. Usually a doctor will use a third party company or group that will receive your sample locally (In your case via express post in the UK) then repackage and send it to the USA. At least that is how I had it done in Australia.

 

[Cheesus]

@Katyw

Alternatively you could think about looking at some immune testing such as IgG antibodies to various moulds. I am working with a UK practitioner at the moment who is running various tests on me which includes looking for immune response to aflatoxins and formaldehyde. Not sure if it what it will turn up but I will let you know when I get my results if you like. I can also tell you how the practitioner is as she does telephone and skype (but is based in London if you are down that way). Will be waiting about a month. I'm not sure she is aware of Brewer though.

 

[redaxe]

Katyw,
Brewer has many patients that had an exposure many years ago yet tested positive for mycotoxins. He believes even a single exposure might be enough for the mold to colonize in the sinuses and therefore cause chronic illness. He told me about a patient with a single exposure 30 plus years ago with a recent positive mycotoxin test.
I think the Real Time Labs mycotoxin test is very important. It is also important to understand what types of treatment have been shown to be effective. It generally takes patients a very long time to show improvement. If you are thinking of going down this road you should find a doctor familiar with the test and protocol.

Is anyone aware of any other research studies that provide additional validation to this test compared to control groups using the RealTimeLabs test? I would also be interested to see people tested who have conditions like Parkinsons disease, Multiple Sclerosis, Liver, breast & prostate cancer, alzheimers disease etc show mycotoxins.

Reason being, I only scored a low level of tricothecenes, which doesn't bother me too much as I know this test isn't strictly speaking measuring a patients body burden but rather a presence/absence of output/excretion which indicates toxin exposure in the body. But I still feel like I don't have a lot of information, and there are only 55 individuals used as controls.
I suppose I should look into getting a retest but the cost is a bit prohibitive.

 

[Forebearance]

Even though I tested negative twice on the RTL mycotoxins in urine test, this Brewer protocol (in my customized version of tiny amounts of areosolized Nystatin in the evenings plus salt inhaler in the mornings for biofilm busting) is definitely doing something for me.

My sinuses are really hurting right now, but my nose doesn't feel congested. I've had sore throats off and on. It's hard to tell if I'm fighting off a virus, or having an immune response that indicates a war in the sinuses.

Over all, I would say that doing this protocol feels like being released from jail an inch at a time. I may have only moved a few inches, but I can see glimpses of blue sky and green grass ahead.

 

[Skiii]

That's great Forebearance!
You're giving me hope... once I can get into the new doctor and try Nystantin.

 

[Skiii]

iFish, did you say you had been doing some research on molds and learned how hard they can be to treat? Do you have any links?

So glad for this thread. Feel like I could talk and read about this all day long, except that's kind of boring to everyone else

 

[redaxe]

I've been looking through this thread and it's very interesting. I haven't been exposed to mold recently but was in 2004. I think this might be too long ago to be an issue now. I fell ill with ME 14 months ago and, like many others, I have been trying to find possible pathology of this. I have never suffered with sinus issues until now and they're occur daily. I don't have an infection and antibiotics did nothing but I do get severe pressure/pain and blocked nose and post nasal drip. I also have a popping sound in nose and throat as if there are air bubbles trapped. Can anyone advise tests or treatment for this? Maybe I should get tested for mold. I thought about buying some Anti fungal medication to try. Have tried everything, At wits end!

Can you be completely sure you haven't had a mold exposure more recently? You have to consider where you studied/worked.... were those environments moldy? Same with where you lived. You can't always visibly see mold.

Houses are often renovated to patch up mold and water damage - for instance moldy drywall is often painted over. Air conditioners are also a problem. The room I was sleeping in (it was a rental house) had a wall mounted air conditioning unit inside. I later found the wall was completely black behind it, and there was a musty smell coming out of it. But I never realized it was a serious health hazard and I didn't even begin to suspect mold until I mentioned my story on an older thread.
As there are no legal requirements (comparable to Leviticus for example) that either set enforceable guidelines or even a precedent to govern how mold should be remediated its very difficult to know if your house is a problem without getting expensive testing done. For instance there could have been a leak through the roof years ago or there could be an ongoing drainage problem on the side of the building that allows moisture to enter the building during prolonged rain and flooding. The lumber used to build a house may have been stored outside and started molding by the time it was installed etc......

 

[Ifish]

iFish, did you say you had been doing some research on molds and learned how hard they can be to treat? Do you have any links?

So glad for this thread. Feel like I could talk and read about this all day long, except that's kind of boring to everyone else

I didn't save my information. Here is a short answer on the subject: http://www.sharecare.com/health/fungal-infections/does-take-cure-fungal-infections

 

[Ifish]

Hi @Ifish - thank you for your message. Wow, I didn't know that. So if you've ever been exposed then it could be still in your system. The problem I have is that I live in England and don't have access to these tests! :-( could I ask you, is there a treatment protocol for this?

I have described the protocol previously. The medications are provided by ASL Pharmacy http://www.aslrx.com/
Here is a cut and paste of a previous post:

Soulfeast,
It all boils down to a simple protocol:
1. Chelating Px in the a.m.
2. AmphoB in the p.m.
Here are the modifiers:
1. Patients reduce dosage in the event the die off is too great. Usually down to every other day or every third day. Reducing the amount is also an option. Brewer had some patients work up to twice per day on the on the AmphoB but now does not feel that doing either the AmphoB or Chelating Px more that once a day is helpful. He feels doing the AmphoB more than once per day is too hard on the nose.
2. Patients that do not tolerate the AmphoB are switched to Nystantin. Patients need to distinguish between die off symptoms vs. intolerance of the medicine.
3. Brewer puts some patients in mupirocin for up to a month if he suspects antibiotic resistant staph. I don't know what his criteria will end up being. Four members of our family did the mupirocin. It seemed to help two of us and didn't seem to help the other two.
The last time Brewer mentioned itraconizole was quite a while ago. He had a few patients on it. At the time he did not feel it would be as effective as AmphoB or Nystantin.

 

[Cheesus]

The problem is getting a prescription. I would be really surprised if anyone here could find an NHS doctor willing to write a prescription for a medical hypothesis. I wouldn't even bother having the conversation with my GP. The only thing to do is find a natural alternative that you don't need a prescription for. Getting a doctor who would go along with this in the UK is not a realistic hope.

 

[Ifish]

The problem is getting a prescription. I would be really surprised if anyone here could find an NHS doctor willing to write a prescription for a medical hypothesis. I wouldn't even bother having the conversation with my GP. The only thing to do is find a natural alternative that you don't need a prescription for. Getting a doctor who would go along with this in the UK is not a realistic hope.

One possibility would be Citridrops and other supportive products developed by Dr. Dennis specifically to treat mold colonization. My daughter previously had been working with a pediatric integrative medicine doctor who has indicated she is having quite a bit of success using this system on her pediatric chronic fatigue syndrome patients. https://www.microbalancehealthproducts.com/SearchResults.asp?Cat=1814

 

[Ifish]

Article in the Washington Post. Note what ultimately helped the author improve. http://www.washingtonpost.com/natio...fff312-d458-11e3-8a78-8fe50322a72c_story.html

 

[David.B]

Article in the Washington Post. Note what ultimately helped the author improve. http://www.washingtonpost.com/natio...fff312-d458-11e3-8a78-8fe50322a72c_story.html

lfish; do you still live in your home/place of exposure?

 

[Ifish]

lfish; do you still live in your home/place of exposure?

We do. However, it has been fully remediated.

 

[Cheesus]

We do. However, it has been fully remediated.

I keep wondering about my house. We don't have any plasterboard or hollow walls (it's all brick and mortar), no wallpaper (paint), we have no air conditioning (I live in NE England), and I've never seen it suffer from damp for the 24 years we've owned the house. It always seems really dry and airy. I also did a culture test and I got one spec of mould growing which the test rated as 'very good'. Could it still have mould somehow?

Having said that, I did sleep in mouldy bedrooms for 2 and a half years straight at university.

 

[Skiii]

Article in the Washington Post. Note what ultimately helped the author improve.http://www.washingtonpost.com/natio...fff312-d458-11e3-8a78-8fe50322a72c_story.html

Glad to see it was written about on such a big platform like the Washington post. The article was long though- I wish she had gotten to the mold part a bit sooner so that people won't stop reading too soon.