• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Detection of Mycotoxins in Patients with CFS

Messages
52
I had a bit of a break from the chelator and amph B as I was moving house and couldn't do that with the side effects. I started the meds up again two days ago and now I have the congested sinus again, almost completely blocked which makes breathing through the mouth a necessity. I have intermittent headaches- almost like a migraine with the nauseous feeling and my eyes are dull, dry and gritty feeling. My nose also has bloody mucous throughout the day. How do people distinguish between an intolerance to the medicine and die off symptoms? I am not sure if this is die off or whether I just cant handle the meds.

I had a bad reaction to the edta so my doc had me try atomizing saline with a drop of idione to bust up bio film - which I could tolerate but don't know how efficient it is at doing the job.
 

Ifish

Senior Member
Messages
182
I had a bit of a break from the chelator and amph B as I was moving house and couldn't do that with the side effects. I started the meds up again two days ago and now I have the congested sinus again, almost completely blocked which makes breathing through the mouth a necessity. I have intermittent headaches- almost like a migraine with the nauseous feeling and my eyes are dull, dry and gritty feeling. My nose also has bloody mucous throughout the day. How do people distinguish between an intolerance to the medicine and die off symptoms? I am not sure if this is die off or whether I just cant handle the meds.

I had a bad reaction to the edta so my doc had me try atomizing saline with a drop of idione to bust up bio film - which I could tolerate but don't know how efficient it is at doing the job.
Die off mostly just make you feel worse overall. Intolerance has more to do with what is going on with your sinuses. So bleeding and stuffiness relates more to intolerance. The headaches are a little more difficult to distinguish. Not alot of fun regardless.
 
Messages
52
Die off mostly just make you feel worse overall. Intolerance has more to do with what is going on with your sinuses. So bleeding and stuffiness relates more to intolerance. The headaches are a little more difficult to distinguish. Not alot of fun regardless.
Not much fun I second that! Yes I feel this is likely intolerance based on the reaction - will ask doc about nyastatin.
 

Skiii

Senior Member
Messages
122
Detts I'm not sure. But when I had the 36 hour blocked nose, my doctor had me back down on the dose, basically to finishing the ampoule, doing a couple long sniffs in each nostril, and try that before switching to nystatin (especially since I already had the amphoB). Also the Nasalcrom and a nasal steroid are helping to keep the inflammation down. It's been much more tolerable!
 
Last edited:
Messages
52
Detts I'm not sure. But when I had the 36 hour blocked nose, my doctor had me back down on the dose, basically to finishing the ampoule, doing a couple long sniffs in each nostril, and try that before switching to nystatin (especially since I already had the amphoB). Also the Nasalcrom and a nasal steroid are helping to keep the inflammation down. It's been much more tolerable!
That's good to hear Skiii - I have also started nasalcrom so hoping that will help. Do you do the smaller dose of Amph B every day? Does the medicine keep once you have opened the ampoule or do you ditch what's left? Thx!
 

Skiii

Senior Member
Messages
122
Sorry for the typo, that should say not finishing the ampoule. I am not doing the dose every day... in fact I'm at about twice a week right now, starting slow. I'm having die-off symptoms and I'm also a busy mom of two, so we're trying to keep my symptoms tolerable. As my doctor says, "It's not a race". I'm not sure if I'm *supposed* to keep the opened ampoules, but I have been so far. I try not to touch/contaminate them and I just put them in a little plastic baggy, then using the rest. I think the Nasalcrom is helping (even with my allergies) but it doesn't hurt to do the steroid, too, and Nasocort is now available OTC. I still get a little stuffy but nothing compared to that one time. The only pain is essentially spacing out 4 different sprays, ha.

We're all in for a fun ride, eh?
 
Messages
52
Yes definitely a ride! I think I'll try that going down to a few times a week and seeing how I fare. I can't do a steroid according to dr because of the fungal issues I have but hopefully the nasalcrom will kick in soon. I noticed the expiration on my Amph B has passed - hopefully that doesn't matter.....
 

Skiii

Senior Member
Messages
122
Well I do think the Nasalcrom is helping, I started it before the steroid. Good luck!

Detts- what is your mold history? I'm curious to hear everyone's story. (feel free to be lengthy!)
 
Messages
52
Well I do think the Nasalcrom is helping, I started it before the steroid. Good luck!

Detts- what is your mold history? I'm curious to hear everyone's story. (feel free to be lengthy!)

Last 3 houses I have rented have been moldy - the last two extensively which I did not know at time of renting. So over 6 years of being exposed but probably I have been around mold a lot more than that growing up in a place with damp weather. I have the dreaded genes according to the test. I tested high in tricothecenes. My main health issues have been upper respiratory - especially sinus and lungs being affected - asthma, bronchial infections, pneumonia, vertigo, cycling fevers. I still am testing high in staph in sinus according to the latest nasal swab despite being on antibiotics and BEG spray.

I didn't attribute any of my illnesses to mold until early this year when dr suggested doing the real times lab test. Then the light went on and I realized the connection between the moldy residences and the sicknesses. Thank God because finally to have a diagnoses that made sense was a huge relief.

Now hopefully the healing can begin. I definitely have good days and bad days but considering all that has been thrown at my body I am doing alright compared to some of the stories I have heard.

I am interested in hearing others mold histories too !
 
Last edited:

redaxe

Senior Member
Messages
230
I started the meds up again two days ago and now I have the congested sinus again, almost completely blocked which makes breathing through the mouth a necessity. I have intermittent headaches- almost like a migraine with the nauseous feeling and my eyes are dull, dry and gritty feeling. My nose also has bloody mucous throughout the day. How do people distinguish between an intolerance to the medicine and die off symptoms? I am not sure if this is die off or whether I just cant handle the meds.

There is a 3rd thing it could be - you might have picked up a flu virus or some other respiratory bug that goes around making people sick. What makes your question difficult to answer is that because the symptoms of CFIDS are largely caused by immune dysfunction (i.e. inflammatory cytokines) and similar inflammation is caused by cold and flu viruses. In my own (n=1) experience although others have reported this too, if you have CFIDS you never/almost never notice colds or flu's because your immune system is always inflamed so you tend to always feel somewhat knocked out thus you lose your perception to judge what 10/10 feels like in comparison to being hit by a cold/flu virus and being a 4/10.

In fact 'cytokine storm' is a known phenomena which is a fatal overreaction of the immune system to a flu virus. This is what made the Spanish flu of 1918 so deadly and that the demographic most affected were young healthy male adults (the group that have the strongest immune systems). I'm going to assume that people who get sick from colds and flu's and need to spend a few days in bed because they feel terrible are having a mild cytokine-storm effect which may be a normal immune response. But if you have CFIDS you probably won't be able to tell the difference between this & your underlying illness so you might blame it on a relapse, a herx or a reaction to meds.

So in short I'm not sure you can prove exactly what your relapse is caused by. And this really sucks cause I felt absolutely shit last week as well with some blood in the mucous and just having a really bad few days. But then family members and other people I know were down with the flu & other bugs going around as well....
But yes if your antifungals start killing a lot of the mold then yes that will release a lot of toxins which the body will absorb and make the immune system go into panic mode. That is the reason why binders are used with antifungals because you want to get the mycotoxins out of the body as quickly as possible.
 
Last edited:
Messages
52
So in short I'm not sure you can prove exactly what your relapse is caused by. And this really sucks cause I felt absolutely shit last week as well with some blood in the mucous and just having a really bad few days. But then family members and other people I know were down with the flu & other bugs going around as well....
But yes if your antifungals start killing a lot of the mold then yes that will release a lot of toxins which the body will absorb and make the immune system go into panic mode. That is the reason why binders are used with antifungals because you want to get the mycotoxins out of the body as quickly as possible.


Good point Redaxe I may indeed have picked up a virus or bug - stuff is going round now schools are all back! I have made sure to keep up with the binders. I have found the CSM to be really helpful so far.
 
Messages
27
Location
Wilmington, North Carolina
My girlfriend has lived with me for the past two years, we are in college. She has noticed: low energy, weird lightning bolt pains in stomach once a day and she has some numbness on her chin. I'm thinking this may be mold or the energy could be from coming off of birth control shot "depo provera".

One thing that is strange is that we both have elevated kidney values but normal liver values. Anyone else have elevated kidney values? Im about to do some research on kidneys and mold.

One thing I have noticed as well is that I have white fuzz on stools, I tested fungi +1 on metametrix test as well "taxonomy unknown(it wasn't candida). I wonder if that is a mold overgrowth in my gi tract?


Negative health effects caused by mold has been noted since biblical times. ;;





33 The Lord said to Moses and Aaron, 34 “When you enter the land of Canaan, which I am giving you as your possession, and I put a spreading mold in a house in that land, 35 the owner of the house must go and tell the priest, ‘I have seen something that looks like a defiling mold in my house.’ 36 The priest is to order the house to be emptied before he goes in to examine the mold, so that nothing in the house will be pronounced unclean. After this the priest is to go in and inspect the house. 37 He is to examine the mold on the walls, and if it has greenish or reddish depressions that appear to be deeper than the surface of the wall, 38 the priest shall go out the doorway of the house and close it up for seven days. 39 On the seventh day the priest shall return to inspect the house. If the mold has spread on the walls, 40 he is to order that the contaminated stones be torn out and thrown into an unclean place outside the town. 41 He must have all the inside walls of the house scraped and the material that is scraped off dumped into an unclean place outside the town. 42 Then they are to take other stones to replace these and take new clay and plaster the house.

43 “If the defiling mold reappears in the house after the stones have been torn out and the house scraped and plastered, 44 the priest is to go and examine it and, if the mold has spread in the house, it is a persistent defiling mold; the house is unclean. 45 It must be torn down—its stones, timbers and all the plaster—and taken out of the town to an unclean place.

46 “Anyone who goes into the house while it is closed up will be unclean till evening. 47 Anyone who sleeps or eats in the house must wash their clothes.

48 “But if the priest comes to examine it and the mold has not spread after the house has been plastered, he shall pronounce the house clean, because the defiling mold is gone. 49 To purify the house he is to take two birds and some cedar wood, scarlet yarn and hyssop. 50 He shall kill one of the birds over fresh water in a clay pot. 51 Then he is to take the cedar wood, the hyssop, the scarlet yarn and the live bird, dip them into the blood of the dead bird and the fresh water, and sprinkle the house seven times. 52 He shall purify the house with the bird’s blood, the fresh water, the live bird, the cedar wood, the hyssop and the scarlet yarn. 53 Then he is to release the live bird in the open fields outside the town. In this way he will make atonement for the house, and it will be clean.”

54 These are the regulations for any defiling skin disease, for a sore, 55 for defiling molds in fabric or in a house,56 and for a swelling, a rash or a shiny spot, 57 to determine when something is clean or unclean.

These are the regulations for defiling skin diseases and defiling molds.

Footnotes:
  1. Leviticus 14:3 The Hebrew word for defiling skin disease, traditionally translated “leprosy,” was used for various diseases affecting the skin; also in verses 7, 32, 54 and 57.
  2. Leviticus 14:10 That is, probably about 11 pounds or about 5 kilograms
  3. Leviticus 14:10 That is, about 1/3 quart or about 0.3 liter; also in verses 12, 15, 21 and 24
  4. Leviticus 14:13 Or purification offering; also in verses 19, 22 and 31
  5. Leviticus 14:21 That is, probably about 3 1/2 pounds or about 1.6 kilograms


and mycotoxins have been said to be used as a weapon in "yellow rain" and The Gulf War.

--------------------------------------------------------------------------------------------------------

Although mycotoxins have been known to have adverse health effects, not until recently has any attention been paid to it as a cause of auto-immune illness' such as Fibromyalgia, Chronic Fatigue Syndrome/ME, Major Depressive Disorder, Bipolar disorder, and autism to name a few.

The first was Dr. Ritchie Shoemaker from Maryland. After trying to stop a ladies diarrhea with an old binding drug Cholestryamine, it also fixed her depression. After an outbreak of Pfiestiera illness in fish effecting human beings living hear his practice. He found these patients had a variety of symptoms and that some exposed had none. (http://www.survivingmold.com/docs/Diagnosis_of_Pfiesteria.PDF)

After binding the mold out of your body and then correcting the inflammatory response marker the body will return to homeostasis.

After treating 20 patients with CIRS caused by mold with Cholestryamine the mean # of symptoms decreased from 14.9 at Time 1 to 1.2 at Time 5.

http://www.survivingmold.com/docs/timeseries_study.PDF

In this study Shoemakers discusses Chronic Fatigue and mold.

http://www.survivingmold.com/docs/Resources/Shoemaker Papers/IACFS_Summer 2009_peds mold paper.pdf

Study showing what percentage of symptoms remained in 26 MOLD-CIRS patients treated with CSM and alternating between treatment and being inside the WDB.

http://www.survivingmold.com/docs/Resources/Shoemaker Papers/NTT5863.pdf



In this study of long term CIRS patients who only had partial recovery in symptoms from shoemaker initial therapy VIP replacement resulted in the following in a reduction of symptoms close to that of controls.



http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

Shoemakers opinions did not receive much attention, although his documented success in otherwise incurable illnesses. Last year a study from Dr. Brewer proving that mold mycotoxins are a cause of CFS illness came out:



""Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome

Joseph H. Brewer, Jack D. Thrasher, David C. Straus, Roberta A. Madison and Dennis Hooper

Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been re...cognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS). Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.""
http://globalindoorhealthnetwork.co...tients_with_Chronic_Fatigue_Syndrome_2013.pdf

I will post some more interesting links to studies and articles worth checking out.

http://www.survivingmold.com/docs/NTT_NQ_PDF_06_17_2014.PDF (MRI showing mold effects on brain different than lyme)

http://www.survivingmold.com/shoemaker-protocol/welcome-dr-rapaport (the certified doctor I am about to begin treatment with)

http://www.survivingmold.com/commun...toxic-mold-in-triggering-psychiatric-symptoms (an integrative psychiatrist's experience find depression/anxiety etc. in mold patients)

----------------------------------------------------------------------------------------------------------------------------------------

I am now gonna blog about some other factors besides my CFS and neurological symptoms for why I have mold.

Me and my S/O both have elevated kidney values. There are dozens of studies showing mycotoxin "Ochratoxin A, aka, OTA" causes kidney malfunction (http://www.tandfonline.com/doi/full/10.1080/.VA4u0tzPZg0)

Mold was found on my stool test.

I have seen mold on my stools.

I have low ferritin, caused by mold?

  • Sequesters iron to reduce oxidative stress
  • Nrf2 upregulates ferritin
Huntington Disease Research Center: Nrf2 and ARE Transcription

Nrf2 and some of the antioxidant response element (ARE) genes up-regulate ferritin!"To our surprise, one of the genes found to be up-regulated by ARE encodes a protein called ferritin"


So if people have Nrf2 inhibition from mold toxicity, we'd expect them to have low ferritin, right? Like we see in CFS.

It seems that Nrf2 activity is required to make ferritin - b0th in response to xenobiotics and also at a normal background level.

Nrf2 Mediates the Induction of Ferritin H in Response to Xenobiotics and Cancer Chemopreventive Dithiolethiones

"Induction of ferritin H and L was not seen in Nrf2 knockout cells, demonstrating that this transcription factor is required for the induction of ferritin in response to polycyclic aromatic xenobiotics and chemopreventive agents. Nrf2 may also play a role in basal transcription of both ferritin H and L. These results provide a mechanistic link between regulation of the iron storage protein ferritin and the cancer chemopreventive response."

Emerging role of Nrf2 in protecting against Hepatic and Gastrointestinal Disease
Transcriptional control of ferritin mRNA expression by Nrf2 is mediated throughARE elements in the promoters of the heavy and light chains of both the mouse and human genes (Wasserman and Fahl, 1997;Tsuji et al., 2000; Chen et al., 2003; Pietsch et al., 2003; Hintze and Theil, 2005;Tsuji, 2005).

Some studies also show elevated eosinopihls (I have this) in mold - will update later.
 
Last edited:

redaxe

Senior Member
Messages
230
This is something very helpful to watch. Doug Kaufmann (Know the Cause) has a lot of material about mold & fungal illnesses. There is a lot of useful information here about the importance of changing your body so it becomes a less friendly environment to mold growth.

If you don't want to watch all of it, skip to 20 minutes to Dr Greg Emersons Interview. He mentions Dr Brewers paper on the 90% of CFS patients with urinary mycotoxins.

Find it here or alternatively on youtube.
http://www.knowthecause.com/index.php/watch/know-the-cause/2197-environmental-mold-3-27-14-9428b

 

Skiii

Senior Member
Messages
122
Redaxe I posted this article before but I think it got lost int he conversation. It's a very thorough overview of mold patients and treatment, I sent it to a couple family members to help explain what the heck I'm going through. There's more info on their blog and I'm just listening to an interview they did with Shoemaker.

http://www.gordonmedical.com/unrave...n-overlooked-factors-in-chronic-lyme-disease/

I'll post my mold history story later, I'm been bogged down with a bad head cold the past few days!
 

Ifish

Senior Member
Messages
182
I've been thinking about this too.

My theory is that you don't get impacted directly by the mould spores, mycotoxins or bacteria you inhale, but rather by the reaction of the mould in your sinuses to these. The mould that colonises your sinuses might sense these and "think" that another organism is trying to compete for the same environmental niche and as a result releases a lot of mycotoxins - potentially way more than the amount actually inhaled. This is why mycotoxins exist in the first place as a competitive advantage.

This could explain why people with colonisation react badly to exposure while "normal" people don't.

I haven't researched this theory too much but it seems plausible. Perhaps someone with more knowledge can comment.

Regards,
P


psz,
I think you make a good point here. I am confident many of us have mold growing in the sinuses, but there is a major question as to the rest of the equation. My family's recent experience might be helpful. By early August my wife, youngest daughter and I all had clear improvement, but then we all became worse again, almost simultaneously. It took a while to figure out, but it is becoming apparent that it all relates to the start of ragweed season. So now the question is what is happening exactly. The insightful comments from you and others help create a list of possibilities, singularly or in combination:
1. Allergy to ragweed makes us worse.
2. Remaining mold in sinuses is releasing mycotoxins in response to ragweed intruder.
3. Mast cell activation
4. Toxin Synergy theory
5. Cytokine storm


Quite a few years ago I did allergy shots to decrease my allergic reactions to a variety of things including ragweed. It is interesting (and frustrating) that eventually my allergy tests were great but I did not feel better at all. I believe the reason is the allergies wasn't really making me feel worse, but it is the mold reacting to the allergens. I've decided to test this out again by going through the allergy testing process. I'll know in a few weeks.

A couple of years ago or so when Brewer was still looking for an effective treatment he stated to me that he felt that if the mold is killed, any hypersensitivity will diminish eventually. Time will tell if he is correct on this. It could be that effective treatment will require some combination of environmental improvement, mold killing in the body, detoxification and some sort of calming down of the inflammatory response. Perhaps it would require the best of both the Brewer and Shoemaker approach on this. For now I am content to try to get the mold to minimal levels and see if everything else calms down over time.

One final point I should make is that my youngest daughter is still clearly better over all despite her seasonal reactivity.

I anxiously await the first hard freeze.
 

Skiii

Senior Member
Messages
122
Interesting. My doctor was wondering if this might help my nasal allergies in the end, too. For the past couple of years I have been getting 'sinus attacks' when my whole nose will get stuffed up overnight. I will have to read more about those possibilities listed.

Glad that your daughter is showing improvement, iFish!
 

Skiii

Senior Member
Messages
122
Does anyone know how soon they put out the videos after the ILADS conference? Really interested to see this years updates.

(and does anyone have the videos from last year?)
 
Messages
52
These are my environmental lab reports from the house I just moved out of:

Negative for Ochratoxin
Negative for Aflatoxin
Positive for Tricothecene at 3.463 ppb ( it is rated positive if greater or equal to 0.2ppb)

Urgh!
 

waiting

Senior Member
Messages
463
These are my environmental lab reports from the house I just moved out of:

Negative for Ochratoxin
Negative for Aflatoxin
Positive for Tricothecene at 3.463 ppb ( it is rated positive if greater or equal to 0.2ppb)

Urgh!

Are they results from air sampling?