Detection of Mycotoxins in Patients with CFS

[Skiii]

Now checking out the subreddit....

 

[mallen12132]

Thanks for sharing Mamakate!

mallen- When did you start getting pain/cfs symptoms? The others on here have posted a lot of info about the best kinds of tests to know if you are currently being exposed. Other than that- have you traveled anywhere else for a week or two and seen improvement? If not you could be colonized, most of us are going on supposition since there isn't an easy way to culture it. As Mamakate mentioned, most of us are confirming our the theory by experiencing die-off when we do the treatment. Do you have a doctor who is current on these issues? I'm sorry you are dealing with this at a young age, I started getting my pain at 22, too (during my exposure).

Thank you for the reply, I am going to read more thoroughly through the thread to try to figure out what test I can perform and figure out whether I am currently exposed or colonized. I have a doctor that I used to perform the test, but she said she doubted if I would have a positive result since my only real complaint was constant fatigue, feeling tired ALL the time.

I still have a lot of learning left to do in regards to all of this, so I will be around here a lot in the coming months. Hopefully I will be posting a success story involving getting better from CFS with mold avoidance, it would feel like getting a second chance at life.

 

[Forebearance]

Welcome, mamakate and mallen12132!
Wow, so Dr. Brewer's treatment works on chronic Lyme patients also?

You don't need your doctor to believe the treatment will work, mallen, as long as she is willing to let you try the protocol. My primary doctor doesn't know anything about CFS, but she is willing to let me try things, and that is good enough. I wish you the best in getting better health!

 

[mallen12132]

Welcome, mamakate and mallen12132!
Wow, so Dr. Brewer's treatment works on chronic Lyme patients also?

You don't need your doctor to believe the treatment will work, mallen, as long as she is willing to let you try the protocol. My primary doctor doesn't know anything about CFS, but she is willing to let me try things, and that is good enough. I wish you the best in getting better health!

Oh, I just meant that she said she doubts I would test positive for mycotoxins considering my only complaint was fatigue. She said I don't really fit the symptoms of mold exposure.

In any event, my next step is to try living a week or two somewhere else and see if I feel better.. if I do, then it is time to move from this house. Is that the general belief of how I should handle the next step to assure that it isn't a past exposure giving me a positive reading?

Also, thanks for the warm welcome, you all are a great community that I am very glad I have found.

 

[Soundthealarm21]

Now checking out the subreddit....

Skii, I created the subreddit to reach people that wouldn't likely make their first choice to look at Phoenix Rising. I've gathered most information from stuff here and a lot of stuff that Lisa has posted here and her website.

 

[Skiii]

Dr. Neil Nathan (presenter at ILADS and from Gordon Medical Associates, a lyme/mold think tank) did a talk today about mold exposure and interviewed Shoemaker.
http://www.voiceamerica.com/episode...and-and-treatment-for-a-surprising-common-and

Here's a previous one they did: http://www.voiceamerica.com/episode...t-for-a-surprising-common-and-serious-illness
Check the right side of the page, there's a lot

 

[mamakate]

Welcome, mamakate and mallen12132!
Wow, so Dr. Brewer's treatment works on chronic Lyme patients also?

I wouldn't say the treatment works for Lyme directly, but many patients with Lyme may have mold as a complication. Lyme perhaps opened the door for mold, or mold for Lyme. Perhaps some people can't fully be healed from Lyme before being treated for mold. Or people may have symptoms they think are from Lyme but are really from mold. I think many of the patients in Brewers study were previously treated for Lyme. He's an infectious disease specialist.

 

[mamakate]

Thank you for the reply, I am going to read more thoroughly through the thread to try to figure out what test I can perform and figure out whether I am currently exposed or colonized. I have a doctor that I used to perform the test, but she said she doubted if I would have a positive result since my only real complaint was constant fatigue, feeling tired ALL the time.

My husband's symptoms are fatigue and all over pain. There wasn't anything respiratory or sinus related that would really make us suspect mold (other than feeling "stuffy" for years) but he still tested very high for all three categories of mycotoxins.

 

[Forebearance]

In any event, my next step is to try living a week or two somewhere else and see if I feel better.. if I do, then it is time to move from this house. Is that the general belief of how I should handle the next step to assure that it isn't a past exposure giving me a positive reading?.

Hi again mallen,
I would suggest asking this question in the forum section titled "Addressing Biotoxin, Chemical & Food Sensitivities". And you might get some help from reading the previous posts there.

 

[psz]

The other thing that we think really helps him is sauna. Often after sauna he feels better than he does before. He's also on a stict diet, taking quite a few supplements, and occasionally does epsom salt baths.

I can confirm sauna works very well for me as well. I'm using a home FIR sauna. Brewer's protocol is long term and it takes a while to see results, however in my experience regular sauna is the #1 short term relief and I've tried many many things.

 

[detts]

I had a month long break from ampho b and started up again on the protocol again last week doing it every other day. So far so good - stuffiness, bit of sore throat but it's tolerable - so far. I am not doing the chelating px in the am as it really irritates me so instead I am doing saline with a drop of iodine in the atomizer.

Also regarding the RTL test - my dr pointed out that when retesting one patient who was originally positive for Tricothecenes but in the second test the Tricothecenes were negative but the Ochratoxin was positive ( whereas it was negative in the first test). It would seem possible that after one type of toxin has been cleared another level of toxicity starts releasing. So when retesting a good idea to retest for all three Mycotoxins.

 

[knackers323]

For about 9 weeks now.
Although I'm not being treated by Dr Brewer. Dr Greg Emerson, Brisbane, Australia prescribed my current treatment.

- its 100mg of Itraconazole (I asked him if I could raise it to 200mg so I've just started that amount)
-40 drops of Crypto-Plus (Researched Nutritionals)
-Cholestyramine
-Dr Ohhira's Probiotic forumula
-Glutathione (Researched Nutrionals) - this I've run out off and because of its cost I switched to NAC (1200-1800mg daily) in a complex with Alphal-Lipoic acid and Acetyl-Carnitine. These 3 seem to be the interest in a lot of medical research lately as they seem to synergize with each other significantly for enhancing detoxificaton, immune function, antioxidant status and blunting the effect of mycotoxin and inflammatory damage that is related in many disease processes. Research is also indicating that NAC also protects your cells & liver from adverse harm caused by antibiotic medicine.
-Gymnema which I've added in the last week

-Phase 1 diet; which involves avoiding sugar, grains, alcohol as much as possible and increase the consumption of carrots, leafy greens and purple vegetables to make the body less friendly to mold. Admittedly this has been a lot harder to keep, but it's more of a slow lifestyle change trying to adapt to a diet that is less based on refined nutrient-devoid empty calories and closer to our biological requirements.
Also a problem dietary wise is corn, peanuts, wheat and soy as these foods are laced with mycotoxins which may be causing far more long term health problems than we would dare to imagine. This relates to animal products like meat and dairy that are routinely fed mycotoxin contaminated feed such as corn & wheat for instance. The only real way to be sure is to consume meat from grass-fed animals & completely avoid foods that contain corn and peanuts etc. Coffee is a problem too but there are some brands now available that ensure the coffee is not contaminated by mycotoxins.


One thing regarding glutathione, research is showing that mycotoxins inhibit the enzymes that produce glutathione so that appears to be another pathway in which mold exposure & mycotoxins will gradually weaken the host. So for for seriously ill people I would be taking both NAC and glutathione until symptoms improve.

Hi @redaxe

Did you find the oral glutathione did much?

How about the NAC?

 

[JCamp]

I can confirm sauna works very well for me as well. I'm using a home FIR sauna. Brewer's protocol is long term and it takes a while to see results, however in my experience regular sauna is the #1 short term relief and I've tried many many things.

psz - which home sauna do you have? I'm interested in buying one of the collapsible tent ones but it seems there is a big difference in quality. I have a place to go for sunlighten saunas near where I live but it is $35 for 35 minutes. Thanks!

 

[psz]

psz - which home sauna do you have? I'm interested in buying one of the collapsible tent ones but it seems there is a big difference in quality. I have a place to go for sunlighten saunas near where I live but it is $35 for 35 minutes. Thanks!

I have one of the tent models, got it for around $200 (http://www.amazon.co.uk/gp/product/B0055HHWXQ?psc=1&redirect=true&ref_=oh_aui_detailpage_o02_s00)

They sell for anywhere between $200 and $500, but it seems that they're all pretty much the same product with a different sticker on, so I went for the cheapest.

It has an electronic panel that lets you choose the heat level (1 to 6) and set an automatic switch off time (from 5 to 40 minutes).

Admittedly it doesn't feel like a high end product and it feels like it's not going to last ages, but it does the job.

The only real issue I found is a weird burning smell from the sauna after using it on full power for 30+ minutes. It's the sort of smell you get from electric radiators. Also the chair they provide heats up and gets uncomfortable (it has metal elements) so I plan to replace it with a wooden one. Other than that though, it's a pretty good product.

 

[Skiii]

Hi Jcamp, thanks for sharing your experience. I'm sorry you have been through so much pain. It does sound like the treatment is doing something though! It sound promising for you.

As for the test- yes, my doctor said that one level of mycotoxins could be masking other ones, as well. Technically my test came back negative for tricothecenes, but there was a number there- so we consider it a positive, I might just not have expelled that much during the test, or it was overshadowed by the high ochratoxin number.

I was thinking about a home sauna too... Wayfair has one of the nicer wooden ones for just over $800.... nice to know the pop ups work too though.

 

[Soundthealarm21]

Technically my test came back negative for tricothecenes, but there was a number there- so we consider it a positive, I might just not have expelled that much during the test, or it was overshadowed by the high ochratoxin number.

That's the limitation with the test. It tells you what's coming out, but doesn't necessarily give a full picture of what's in there and how much. But for now that's the test we have.

 

[mallen12132]

I am moving out of my home this week after testing positive for Trichothecenes (0.67)


What things am I able to bring with me? What things must I leave behind? Can I bring my clothes with me after washing them in another washer/dryer? What about my car which I drive directly after being in the house?

Just looking for some guidance on exactly what must got and what can be brought along.

 

[detts]

I did bring clothes - laundered in ammonia and borax. Many people will say you should leave everything . I also bought with me computers which I'd had cleaned out - kinda regretting that though . I have a lot of expensive electrical equipment which is right now sitting in garage I am not bringing those into house..

I still have my car which I did have thoroughly detailed. I still drive with the windows down.

I threw away all books, artwork, sofa, beds, unneeded paper.

Kept most kitchen ware - washed in peroxide.

I had to keep a ton of papers due to my business records but again they are in the garage in a sealed box. At some point they will have to be scanned or photocopied.

I guess it depends how ill you are and what your gene type is? My tricothecene levels were 0.88 but apparently I do not present nearly as sick as some with lower levels perhaps because my HLA DR gene are hetero and not homozygous.

If I was doing it all again I would not keep the computers - as I always wonder if they are releasing mycotoxins. I probably wouldn't have kept anything except clothes but I live with someone who was not affected by the mold and was hard to have him let go of electronics etc.

I think non porous items that can be cleaned are safe for some. I kept non - porous items.

 

[JCamp]

Hi mallen,

The thinking on this varies so much. I'm very ill and meshed the advice of my mold experts, movers, docs, and Internet research.

I threw out all rugs, pillows, mattresses, etc. I also threw out eveything in my basememt, where my mold was heaviest. For two months I put everything else in storage. Even my car. I had my mom bring me new clothes and lived in a hotel for two weeks until I found my current apartment with rented furniture.

I saw no difference in health being without my belongings for two months.

I have brought over many clothes (washed offsite) now and starting to bring a few dishes and small tables. But I don't want to be around all of my stuff yet. There is a mental barrier so just feeling it out. I don't know my hla type but my doctor r said it wasn't important for me at this time.

Just like with the medical protocol, you must do what's best for you. It is impossible to avoid mold completely and many get better by getting the colonization out of their body even when they are around their belongings.

I also read about mycotoxin half lives somewhere and that made me feel better....if there isn't a mold colony on the belongings, the mycotoxins should go away over time.

Good luck!

 

[mallen12132]

Thank you a ton for the responses guys, I am really torn on the idea of getting rid of everything, but mostly it is clothes that I am worried about getting rid of. Just because it would be really expensive for me to replace a lot of clothes, but it seems that both of you have kept your clothes, so that is encouraging.

To both of you though, how has your improvement been so far? JCamp, are you stating that you haven't really gotten any better since moving away from the place so far?

Thanks again for the responses.. I am very eager to move away from here and see if I start progressing, I sure started feeling considerably better while being in a hotel for a week.