Detection of Mycotoxins in Patients with CFS
- Thread starter slayadragon
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iFish. I cannot express how happy I am for your family. I know how it feels to be only mildly affected by this (comparatively) and how incredible it feels to have a cause and a fix. I can't even imagine being that deeply disabled from it and returning to life. I'm so glad your daughter is regaining her life!
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With that said....
I can not do this. It's been 2.5 weeks since I even did the Brewer treatment, but I got a head cold right after. I have been stuffy for 2.5 weeks. It has affected my life, my work, my sleep. I am now so stuffed up I can't breathe through my nose even the tiniest bit. I feel like I'm being tortured and all I want to do is hit something. I don't know how I will get to sleep tonight.
Has Brewer or anyone else mentioned sinus surgery? I know someone who had a fungal ball, and she said they literally scraped out her sinuses and then treated them with an anti-fungal. Is this an option? I've been through sinus surgery once and have no desire to do it again, but honestly at this point what I'm going through is not bearable. I would seriously consider surgery if it could get rid of most of this stuff. Not even sure how to find an ENT that knows about this stuff though.
I can not do this. It's been 2.5 weeks since I even did the Brewer treatment, but I got a head cold right after. I have been stuffy for 2.5 weeks. It has affected my life, my work, my sleep. I am now so stuffed up I can't breathe through my nose even the tiniest bit. I feel like I'm being tortured and all I want to do is hit something. I don't know how I will get to sleep tonight.
Has Brewer or anyone else mentioned sinus surgery? I know someone who had a fungal ball, and she said they literally scraped out her sinuses and then treated them with an anti-fungal. Is this an option? I've been through sinus surgery once and have no desire to do it again, but honestly at this point what I'm going through is not bearable. I would seriously consider surgery if it could get rid of most of this stuff. Not even sure how to find an ENT that knows about this stuff though.
Skii,
Sorry all this is going on. You certainly could consult with an ENT to see if there is some issue with you sinuses. Brewer did mention sinus surgery. He said that his patients have a variety of problems that can prevent the protocol from being effective, such as deviated septems etc. He said that sometimes sinus surgery is necessary.
My wife has similar problems with sinus congestion. Sometimes she just has to go off the amphoB for a couple of days to allow things to calm down. Recently she had to go on nystantin for a while. According to Brewer stopping for a couple of days really doesn't hurt anything. Brewer also indicated he really hasn't had anyone that couldn't tolerate the nystantin. Have you tried that?
Thanks iFish. I actually have had surgery previously (right after I was exposed to the mold and had chronic sinusitis) to open everything up. So on that front I should be good. My doctor thinks I'm very colonized. I'm wondering if they can go in and kind of scrape or get rid of most of it.
I haven't tried nystantin yet- did your wife notice less congestion while on it? My doctor has moved out to the west coast. I have an appointment to see another doctor that knows the protocol, but not until October 23rd, so I will have to wait until then for the new prescription. And unfortunately this new doctor is a naturopath and doesn't take insurance. I'll be asking him about surgery and ENTs that know about fungal issues.
I haven't tried nystantin yet- did your wife notice less congestion while on it? My doctor has moved out to the west coast. I have an appointment to see another doctor that knows the protocol, but not until October 23rd, so I will have to wait until then for the new prescription. And unfortunately this new doctor is a naturopath and doesn't take insurance. I'll be asking him about surgery and ENTs that know about fungal issues.
I've never heard anyting about scraping out the mold. My wife's congestion is much better on the nystantin. I think there is a good chance this help you. It seems to have a very good track record.
soulfeast
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Great news, @Ifish !! Thank you for sharing! Very good to hear. You have been a life line for some of us. Thank you for that as well.
Thanks again, iFish. I agree about you being a life-line!
I will ask and most likely go on the Nystantin. That was the next move if just cutting back the actual dosage of amphoB didn't work. I'm wondering– if the mold die-off causes the inflammation, why the Nystantin wouldn't cause it as well if it's doing it's job of killing the mold?
In the meantime I might call ASL and talk to a pharmacist.
I will ask and most likely go on the Nystantin. That was the next move if just cutting back the actual dosage of amphoB didn't work. I'm wondering– if the mold die-off causes the inflammation, why the Nystantin wouldn't cause it as well if it's doing it's job of killing the mold?
In the meantime I might call ASL and talk to a pharmacist.
I'm starting to wonder about this as well. I've had some good moments lasting several days (actually good is an understatement, I would say closer to amazing) but it doesn't seem to last and the crash returns. For the record I'm not on Ampho B I'm on Itraconazole.
Apparently you can get CT or MRI scans of the sinus that will reveal these fungal hyphal balls if they are present. What specialist would you need to see to arrange such an examination? It sounds like the examination is a fairly routine thing that can be organised, and that would tell you if you need surgery or not.
The other thing I think everyone on anti-fungals should be taking is this herb here; Gymnema sylvestre. It is quite cheap and is widely available, e.g through iherb. Anyway they found that the active compound in the herb stops the growth of fungal hyphae & biofilms and it also moderates blood sugar levels which reduces sugar cravings (which invasive fungi love).
http://www.sciencedaily.com/releases/2013/09/130912131803.htm
I've felt a bit like this at times but not as bad as that. Have you tried doing sinus rinses? Maybe try backflushing bicarb soda in water or even coconut oil down your nose. Orally all I can suggest is try taking high levels of NAC and Quercetin until you feel better.
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Redaxe-
Any ENT or even your primary can order CAT scans. I've had two. One was while I was in the moldy environment and having chronic sinus infections and it showed a thin layer of mucous/inflammation all around the sinuses (hello, biofilm!) , and then I left that classroom, had sinus surgery 5 months later, and had a second CAT scan several months after that, for more sinus infections. The second cat scan looked almost identical except slightly thicker layers.
I've not heard of quercetin! Or Gymnema sylvestre. I did post an article about melatonin/mold a few pages back. I can't take NAC, I have to be careful as I've had very strong reactions to any methylation meds. I am taking glutathione but have to take the tiniest dose every other day or I get side effects.
Any ENT or even your primary can order CAT scans. I've had two. One was while I was in the moldy environment and having chronic sinus infections and it showed a thin layer of mucous/inflammation all around the sinuses (hello, biofilm!) , and then I left that classroom, had sinus surgery 5 months later, and had a second CAT scan several months after that, for more sinus infections. The second cat scan looked almost identical except slightly thicker layers.
I've not heard of quercetin! Or Gymnema sylvestre. I did post an article about melatonin/mold a few pages back. I can't take NAC, I have to be careful as I've had very strong reactions to any methylation meds. I am taking glutathione but have to take the tiniest dose every other day or I get side effects.
Ok I'm booked in to see a GP early next week so I will get a referral then. So from your experience you got surgery but it didn't work? Or did the mold biofilms return by the time you had the second set of scans?
Regarding Quercetin, at the risk of sounding like a salesman the best product out there that I know of, although its a little pricey is Ortho Molecular Products - Natural D Hist
That one has Quercetin which is a mast cell stablizer but also includes other natural anti-inflammatory ingredients; Bromelain & Stinging Nettle Leaf. It does contain a small amount of NAC.
I only use it if I get a severe sinus flareup or allergies so for me it's in my supplements box as a 'use as needed basis'.
Christopher
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How long have you been doing the brewer treatment?
Christopher
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I am seeing my doctor tomorrow who will most likely be prescribing this.
Forebearance
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Best wishes with your new treatment, Christopher.
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.
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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!
Ok, I didn't tell my story yet- but in case it helps anyone else out, I will. I've had unexplained muscle pain for 9 years now. It started when I was in my early 20s and getting married, under a lot of stress at the time with teaching and the wedding. It started as neck pain that took a few months to go away, then came back, etc, until it eventually became chronic. Some days it was so bad I'd cry when my daughter asked to be picked up. With each pregnancy, I developed very bad hip pain. It didn't go away after birth, and I ended up going to two orthos and getting steroid shots for what I was told was piriformis syndrome (tendonitis in my hips). Meanwhile, neck and shoulder pain is always bad, been through pcps, massages, the two orthos, 3 chiropractors, acupuncture. I was never diagnosed CFS or fibromyalgia as I still retain a fairly normal life but I was headed in that direction. Over the past year or two other parts of me had started getting muscle knots, too, until it was myofascial pain syndrome. No one ever had an answer for me.
Last year I finally found a LLD who knows functional medicine. I told him about the pain, and secondarily about the inability to lose weight despite diet/exercise. In the first hour of meeting me he pinpointed it. He wrote down my entire timeline of pain. Then he ran through questions. No lead paint, no tick bites, etc. He then asked if I had ever been exposed to mold. Um, yes, actually, I worked in a really moldy classroom- it was awful. The smell was overwhelming and I had allergies, sinus infections, and eventually sinus surgery. Apparently they had steam cleaned the carpets during the summer and left the room closed up- when they came back in they found an inch of fuzz growing out of the carpet. And how did they clean it up? They just vacuumed it. My symptoms were so bad I actually forced them to replace the carpet (oh the poor children sleeping on it!). Then he asked when was this? And my jaw dropped. It was the school year leading up to my wedding that spring.
It was right then he told me all about Shoemaker and Brewer. I had never made the connection, and I know I never would have. I didn't correlate the year of sinus and allergy hell to 9 years of following muscle pain and tension. And now actually I realize that my poor memory and the fact hat I get dizzy easily, and sometimes have ringing in my ears might all more than just "mommy brain". But there it was- in black and white on the timeline he wrote out. At the start of the timeline he wrote MOLD. It was actually hard to wrap my head around at first. Then the Realtime mycotoxin panel came back, and there it was - 10.34 for ochratoxin and a bit of tricothecenes. Now that I think back it all makes sense. And since then we've proved Brewer's theory correct, I got much better on the CSM, only to get worse as soon as I started the amphoB, and I've been stuffy and more achey since.
I had been going to my primary for chronic sinus infections. I mentioned the moldy carpet months in and she looked it up and said there was such a thing as fungal sinusitis and sent me to an ENT. The ENT was an ass and dismissed it, said he saw 2 cases a year and was pissed that I was 'diagnosing myself'. Went to another ENT with the CAT scan. He said the gray mucous/inflammation was just a sinus infection that wasn't even that bad- couldn't understand why I was in so much pain, but that my sinus bone structure was narrow and hadn't developed well, so he went in and opened everything up so that I wouldn't get as many sinus infections. He didn't scrape any of it out and back then (9 years ago) they didn't know or think to swab it for a sample. They assumed the chronic sinus infection would go away so long as everything could drain better. I'd bet $1000 bucks that gray lining was actually the mold and biofilm.
So no it didn't go away and come back, it was there and had even gotten a little worse.
Last year I finally found a LLD who knows functional medicine. I told him about the pain, and secondarily about the inability to lose weight despite diet/exercise. In the first hour of meeting me he pinpointed it. He wrote down my entire timeline of pain. Then he ran through questions. No lead paint, no tick bites, etc. He then asked if I had ever been exposed to mold. Um, yes, actually, I worked in a really moldy classroom- it was awful. The smell was overwhelming and I had allergies, sinus infections, and eventually sinus surgery. Apparently they had steam cleaned the carpets during the summer and left the room closed up- when they came back in they found an inch of fuzz growing out of the carpet. And how did they clean it up? They just vacuumed it. My symptoms were so bad I actually forced them to replace the carpet (oh the poor children sleeping on it!). Then he asked when was this? And my jaw dropped. It was the school year leading up to my wedding that spring.
It was right then he told me all about Shoemaker and Brewer. I had never made the connection, and I know I never would have. I didn't correlate the year of sinus and allergy hell to 9 years of following muscle pain and tension. And now actually I realize that my poor memory and the fact hat I get dizzy easily, and sometimes have ringing in my ears might all more than just "mommy brain". But there it was- in black and white on the timeline he wrote out. At the start of the timeline he wrote MOLD. It was actually hard to wrap my head around at first. Then the Realtime mycotoxin panel came back, and there it was - 10.34 for ochratoxin and a bit of tricothecenes. Now that I think back it all makes sense. And since then we've proved Brewer's theory correct, I got much better on the CSM, only to get worse as soon as I started the amphoB, and I've been stuffy and more achey since.
I had been going to my primary for chronic sinus infections. I mentioned the moldy carpet months in and she looked it up and said there was such a thing as fungal sinusitis and sent me to an ENT. The ENT was an ass and dismissed it, said he saw 2 cases a year and was pissed that I was 'diagnosing myself'. Went to another ENT with the CAT scan. He said the gray mucous/inflammation was just a sinus infection that wasn't even that bad- couldn't understand why I was in so much pain, but that my sinus bone structure was narrow and hadn't developed well, so he went in and opened everything up so that I wouldn't get as many sinus infections. He didn't scrape any of it out and back then (9 years ago) they didn't know or think to swab it for a sample. They assumed the chronic sinus infection would go away so long as everything could drain better. I'd bet $1000 bucks that gray lining was actually the mold and biofilm.
So no it didn't go away and come back, it was there and had even gotten a little worse.
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@Skiii, you could also have had a tickbite. Many people don't see the nymphs, especially the black legged nymphs. I pulled one off me this April that had probably been on about an hour. I was using a camping miner's lamp and I saw the tiniest black "freckle" -- that I knew wasn't a freckle. There is probably a reason the mold caused you such a whammy. Have you been properly tested for tickborne infections? Also for the sinus, if you can find a salt room that should help.