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Fungus

Tia

Senior Member
Messages
247
Hmm, I get fungus in my scalp, resulting in dandruffexema, and also in the private part area and lately on one of my toenails to. :O I'm suspecting that when I shower my hair might contaminate the rest of the body, but it's just a thought. I think the fungusproblem that started in my teens, is a result from xmrv, what do you others think and is it common to get fungus on several places?
 

justy

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5,524
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Hi Tia, i have had this problem and it was definately related to an internal fungal overgrowth of candida. I started a strict anti candida diet and the first thing to clear up where the externsl infections including a stubborn case of atletes foot. I am still working on the internal infection, but am definately getting somewhere with it all.
 
Messages
5,238
Location
Sofa, UK
Hi Tia, yes the fungus issue, I personally think, is probably fundamentally important and relevant to ME/CFS. Extreme vulnerability and sensitivity to fungus seems to be very common amongst us. There's masses of info on the forums about it all, I've written about it quite a lot myself - I'm just posting now to suggest that you search the forums for "mold" in particular, and also for posts by slayadragon which should uncover masses and masses of information about this subject. It took me quite a long time to realise that most of the info I was looking for was under "mold" rather than "fungus"...
 

heapsreal

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australia (brisbane)
Fungus/candida problems can occur because of a dysfunctional immune system, which maybe caused by a retrovirus or something else. Diflucan or nizoral tablets can help as well as low carb diet, can also try nizoral shampoo on scalp and private parts
 
C

Cloud

Guest
I have a re-current fungal infection on my back. It appears when I have a flare, and recedes when I'm doing well....just like a barometer for my immune status. Ketoconazole (pills) will knock it right down, but I use it sparingly since it's so hard on the liver. I haven't had the rash for over a year this time since doing the anti-viral tx that allowed my immune system to get a better foothold.
 
Messages
5,238
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Sofa, UK
I have a re-current fungal infection on my back. It appears when I have a flare, and recedes when I'm doing well....just like a barometer for my immune status.

Bells ringing out loud and clear here for me, Cloud! Apart from having had all the other fungal infections mentioned, starting with athlete's foot around the time of onset (and before everything else kicked in), I have had several bouts of an infection on my back. I've made really good progress with understanding how all these things affect me, over the years - without changing the underlying problem at all however - so I'll share a little of what I've learned as far as it affects me...

The basic point I would make is to reverse what Cloud said above. I would put it like this: "I have a flare when it appears, and I do well when it recedes".

In other words, for me, getting on top of fungus infection and exposure to fungus/mold is the fundamental means I have of controlling my condition. Lisa might take this a bit further than I would, in suggesting that extreme mold avoidance is the fundamental underlying issue for ME/CFS generally, and that toxic mold is fundamental to the condition generally. I'm a little less bullish about that, I think, but I have to say that for me at least, that has basically been my fundamental observation over many years. Controlling mold and fungus exposure is the big thing - and it's really, really subtle and incredibly hard to do and hard to perceive all of the exposures, so I can easily believe that it could be fundamental for everyone and many people would never notice an effect even if they did a lot to try to control mold for just a month or two.

My sensitivity to mold is extreme. Only after about 1-2 years hard work on multiple fronts did I become consciously aware of all the mold sensitivities that affect me, because before that, I was so assaulted by them all, constantly, that I had no "good" state to compare the "bad", mold-exposed state with. Many months of complete escape from mold were needed before I started to directly perceive the effects when I was exposed again. Now, I am 80-90% functional much of the time - but I can pick up mold, or seasonally it can hit me again (as it has recently) and if I can't figure it out, work out where it's coming from, and get on top of it, the symptoms all come back, one after another, like dominos - all the kind of symptoms we all know so well...

So: mold avoidance measures. An air filter is crucial. Dehumidifier makes sense although I don't actually have one, I just monitor the windows and open one at the slightest sign of condensation, and I keep a window open at the other end of the flat to keep humidity down (small, and careful about the location, because fungal spores also blow in from the outside environment so a permanently open window in autumn can be a very bad idea - it's a delicate balancing act). But the air filter made one of the biggest differences. Hunting round the flat and identifying little patches of mold-like growth, and cleaning them up, was another big job, and that took ages and was hard work because of course, the contact from cleaning the mold lays me out flat in itself. But over a period of time, I did start to get the mold in my home environment under better control. And then finally: clothes. I need a new set every month or two, really. I think I'm sweating out something mold-related, implying that the infection has taken root at quite a deep level. So clothes and bedding eventually get infected and have to be constantly replaced. Obviously it's a big and rather depressing job, and a big cost too, but it is crucial for me.

Lastly: regarding the recurrent infection on my back: listen up Cloud because I'd put money on this one! I had this going on for years, coming and going, mysteriously, and sometakes taking weeks or months to clear. All kinds of medicines and creams from the GP, all of which seemed to provide barely any help at all, maybe just a little relief. But eventually, once I'd realised what was going on, it was so simple: specific shirts or t-shirts were infected, and once I myself had the infection on my back, that was in turn infecting the rest of my clothes. These infections of clothes and bedding lie dormant for years and years. I've confirmed that once or twice, to my cost, when I've been busy and run out of clothes, go back to very old t-shirts and they've infected me within days.

Now that I realise all that, I can very carefully determine which shirts are infected, get rid of them, and move on. New clothes if necessary - but of course they too will get infected if I'm infected myself. So it's a really, really hard war to fight. I am constantly ditching 'infected' clothing. The only way I have, is to pay really, really close attention to how I feel, how much I'm itching, or how well I feel generally, when wearing different clothes. Endless experimentation, trying this shirt for an hour, then that one for an hour, until I work out which is worst. And lots and lots of baths to try to clear it. It is hard to do, I really can't stress that enough, how hard it is to get on top of all this, but it is absolutely crucial, for me anyway. And of course it's vital to get on top of it and spot it early, at the first sign of an outbreak, and not let it slide into decline. It only takes a few days to spread and get really noticeable, but it then takes a few weeks or months to clear it. So my radar is up for all that sort of stuff all the time.

I don't say this is the whole story of everything. I have other things I manage too, to maintain my equilibrium. I haven't slept in a bed for years, I sleep on a leather sofa - I still can't tolerate fabrics and even most clothes are a problem, my head hasn't been on a pillow for years and if I ever do try it, I'm itching all over my body within minutes. I have a hugely restricted diet most of the time, and when I relax it, after a week or two I start to feel the effects of that too. All that can easily be mold-related too, of course, but I'm not sure that mold alone can explain why I've become so sensitive to mold. XMRV might well be what explains that...

And I don't know whether all this can explain all of ME/CFS either. An awful lot of us know we have big issues with mold/fungus, and I can very, very easily believe that maybe everyone else does too and doesn't know it - there are millions (billions?) of species of mold and they're mostly practically invisible, the effects are so subtle, that it could just be a hidden issue for all of us. Or it might just be something that's a symptom we're all sensitive to, along with lots of other things. And I'm of the "never catch colds" variety, and I think that people who are "always catching colds" generally seem to have less progress through mold avoidance - or at least, many of them make progress but are still left very sick even so - so maybe the most severe ME has other things going on as well.

But I can't help going on about it, every time it's mentioned, because it's such a massive part of my own experience, and a really big part of the overall picture of ME/CFS, I'm pretty sure of that. I think anybody with ME/CFS who hasn't looked into mold seriously, especially if they have had any kind of persistent athlete's foot etc, really needs to get on top of that issue, and prepare for the fact of dealing with their entire environment, and prepare for a war that can last for months or even years. Alongside all of that I'd place "the gut", and diet, as something everyone with ME/CFS needs to take a hard dedicated look at over months or years.

Neither of these are easy, quick-fix solutions, and neither of them leads to a "cure" - everyone I know who's made progress with these, even big progress as I have, has the same vulnerabilities in place after making that progress, and relapse can still be swift when we're exposed to mold again. But the good news is that so many people have made good progress with these things that, for sure, a lot of us are capable of improving our quality of life enormously if we pursue these issues.
 
C

Cloud

Guest
Thanks Mark....Some great information. Here where I live in the Northern California rain forest, mold and fungi thrive. Even though I have lived in this environment my entire life without any negative health consequences, that may have changed with the onset of an Immune dysfunction.

Last Spring, I moved from a place with an obvious mold problem to see how much it affected my illness....and I found that it was definitely contributing. I can clearly see an improvement since that move. I did clean and wash everything with that move, but I know it doesn't meet the "extreme avoidance" standards. I am taking progressive steps into mold free environments. I can't suddenly go "extreme" without becoming homeless. For me that's not wise since I'm sure the mold sensitivity is result rather than cause anyhow. If I believed it to be even a major contributor, I'd be in my truck and headed for Arizona today. I see mold avoidance as just another aspect of managing this disease, just like pacing. I will be moving again soon and that will give me another look at the mold contribution.

The exposure to lingering mold or fungi on shirts and other clothing is interesting, but I believe the rash on my back is systemic rather than topical. Anti fungal creams, sprays and other topical treatments will do nothing for it.....but one tab of ketokonazole knocks it right down for weeks. My immune system knocks it down too, when functioning better. But I do appreciate your ideas on transferred mold because I can look more closely at that as well.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I find that if I get a big inhaled mold exposure, I get a candida bloom (e.g. an increase of white stuff on my tongue). I would imagine that any other area of the body that was predisposed to fungal infections might be affected by inhaled exposures, therefore.

Of course, an area like the back could also be reacting to a dermal exposure.

Mark, I continue to be a little perplexed by the extent to which clothing has an effect on you. Certainly you may be sweating out something bad, but I've not had the experience that detox ruins my clothing. And I've not gotten that sense from Erik or any other extreme mold avoiders.

What does give me (and others) the reactions that you describe is washing clothes in contaminated water. We think that's from cyanobacteria poison. In many places, the water supply is contaminated only periodically, which makes trying to figure out what's going on quite a challenge since water coming from the tap can be fine on some days and very bad on others.

Erik finally got sick of dealing with it and bought a "monster distiller." Now he uses distilled water for just about everything, including (I think) bathing and washing clothes.

Have you found that clothing that you've not washed has gone bad?

I guess it also could be that clothing could go bad just from toxins in the air, but I've not found the level of specificity that you describe with regard to my own exposures. The level needed to cause my clothes to be that contaminated would make me horrifically sick from breathing it.

Best, Lisa
 

Tia

Senior Member
Messages
247
God DAMN, this makes sense!

I immediately recognized the white tongue-problem. I use a tonguescrape on that but sure enough it reapperrs. Wonder if fungous have anything to do with the cause of tonsil stones? Hmm..

On thing that gets me though, is that a lack in the immunesystem? Aren't our immunesystems overloaded because of the xmrv?
 

LaurelW

Senior Member
Messages
643
Location
Utah
Interesting note: I was watching the PBS NOVA show about the Chilean miners a few days ago (you can stream it on their website), and they said that one of the doctors' biggest concerns was that since they had no exposure to UVA/UVB rays, they would be at much higher risk for bacterial and fungal infections, so they had them on a lot of antibiotics.

This makes perfect sense to me, because I spend as much time as possible from about now to May laying outside in the sun, and it always makes me feel better. I'm completely covered with clothing/hats/umbrellas/blankets, but I swear that some of those rays make it through and into my body.

So it would also be logical that those of us who are bed- and housebound would be at higher risk for fungal infections.:mask:
 
Messages
18
Location
United States
I have had this for a very long time as well. I'm not sure if we're talkin about the same thing, but I use prescriptions selenium sulfide shampoo to control it. It causes an extreme itch, and left unattended causes my hair to fall out quite dramatically. What also helped was 3 weeks on Ketoconazole/Nizoral (Rx antifungal), like others mentioned, but believe it or not, two weeks later it came back again... Don't know if there's a solution. But the shampoo helps control the itching and hair loss. Oh, I also get little rough patches of skin that don't itch, but it's still some type of rash, I suspect from this same fungus.

This particular problem, in my case, is not candida. The culprit here (again, for me at least) is from the Malassezia genus of yeasts that is naturally found on the body (much moreso on the scalp) but if the conditions are right, of course it overgrows.

That said, having candida overgrowth on top of this other type of yeast, is not a good combination!

Nystatin comes in a mouth rinse you can request, for oral candida/white tongue. Oral nystatin tablets, while less harsh on the liver, only stays in the gastrointestinal tract, so it won't help your seemingly wide-spread problem because it's not absorbed into the bloodstream... It can still help, but note that it won't be enough. Ask for the Ketoconazole shampoo or tablets for the best eradication of the Malassezia species. It will help candida too, but from my experience, Diflucan works on that species much better.

:Retro wink:

(ETA: Also, are you asking if XMRV causes this, because you have XMRV?)
 
Messages
5,238
Location
Sofa, UK
Mark, I continue to be a little perplexed by the extent to which clothing has an effect on you. Certainly you may be sweating out something bad, but I've not had the experience that detox ruins my clothing. And I've not gotten that sense from Erik or any other extreme mold avoiders.

What does give me (and others) the reactions that you describe is washing clothes in contaminated water. We think that's from cyanobacteria poison. In many places, the water supply is contaminated only periodically, which makes trying to figure out what's going on quite a challenge since water coming from the tap can be fine on some days and very bad on others.

Erik finally got sick of dealing with it and bought a "monster distiller." Now he uses distilled water for just about everything, including (I think) bathing and washing clothes.

Have you found that clothing that you've not washed has gone bad?

I guess it also could be that clothing could go bad just from toxins in the air, but I've not found the level of specificity that you describe with regard to my own exposures. The level needed to cause my clothes to be that contaminated would make me horrifically sick from breathing it.


I've been reflecting on this Lisa. There is definitely some aspect of how clothes 'go bad' that I'm still missing, and as I think back, you could be right. There do appear to be sporadic 'contamination events' but these also tend to coincide with an exposure which means increased sensitivity generally, which makes it harder to track down the source of the problem because I'm over-sensitised to everything anyway.

Another confounding factor is that often I find new clothes cause the same range of irritation, from mild to severe, and even a pack of 6 theoretically identical shirts, say, can show variation. But a further complication I've recently discovered is that just one 'contaminated' item raises my sensitivity generally, body-wide, which has been causing me a lot of confusion previously.

Anyway: it does seem to fit that clothing frequently 'goes bad' after washing, particularly at higher temperatures. My memory also suggests that when things 'go bad' it's generally just one or two items from a set of washing but sometimes lots or nearly all of them. I might have a new set of clothing which lasts 2 or 3 washes and then they all start to degrade - I think you previously mentioned fibres degrading and that makes a lots of sense.

But the sweat thing basically goes back to experience with beds and bedding. Always it has been the case that on the 3rd or 4th night in a bed, I'm starting to itch when I lie in the areas where I myself have previously been lying during the night. It's less true now perhaps, but I'm almost certain that in the past I have been somehow sporadically shedding the 'infection' onto bedding, probably through sweat. Those events are very occasional I think, once every month or two perhaps, and they don't necessarily coincide with the obvious crazy night sweats, but I think they are related. My FIR sauna experience was similar: some sweats were just water, others had something else in them too...

So I'm continuing to mull over what you've said and I'll be monitoring it over the coming months. Occasionally contaminated water is quite believable, but I also have to always take into account that whatever it's 'contaminated' with is almost ubiquitous and can be found on chairs and sofas and clothing all over the place, so I tend to suspect the most obvious source of contamination of the water is via some item of clothing that I wash that has become contaminated. Anyway...I will monitor and report back...
 

justy

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5,524
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Hi, i just wanted to add to the clothes contamination thing here. Its perhaps a sensitive area to discuss, but i have had really bad systemic candida for years and have now noticed a lot of itching all over my body. I also get itching under my breasts - a common place for yeast infections. Recently the itching was driving me crazy and i started to think it was my bras recontaminating me. I tried changing to some old ones i had at the back of the cupboard and dont get the itching now if i wear them. But, after washing the other 2, they still make me itch. Its really strange and i cant explain it at all. Now i am worried the "safe" ones will got the same wy eventually.

Sorry if this is too personal, but it seemed pertinent
 
Messages
5,238
Location
Sofa, UK
Justy, it's sometimes necessary to discuss sensitive subjects here so don't have any concerns about that.

What you describe is entirely consistent with my experience. It is so bizarre that it boggles my mind to try to analyse or explain it: there is certainly something strange going on here. But as you have described: clothing "goes bad" and repeated washing seems to make no difference: once it's "gone bad", that's it. And yes, the "safe" ones do all seem to "go bad" eventually - although I have a very few old clothes that have stood the test of time and don't seem to "go bad". And I can't find any logic to that either I'm afraid.

This whole experience is fairly widespread, there are a lot of us on this forum that have reported it. Whether it's a subset of ME/CFS, something that we are all susceptible to, or something that is going on for all of us, unnoticed, I don't know. It has long been my suspicion that I am, in a way, fortunate that I can "feel" this itching - I am alerted to things that most people can't sense, and maybe whatever that is I'm sensing is the cause of ME/CFS: if I couldn't feel it and avoid it, I would be in a much worse situation: I know what effects it has on me when I remain exposed to something that makes me itch, and it's basically your standard list of ME symptoms. So I do think it's important to get to the bottom of just what it is that I'm reacting to, and what exactly is the nature of that reaction - something currently unknown to medical science.

It would seem that it ought to be fairly easy to investigate this question. Several of us have "archives" of clothing and bedding with varying degrees of "infection", so if we could convince anybody to investigate them it shouldn't be too hard to figure out what's going on. But of course that's not as easy as one would assume...
 

LaurieL

Senior Member
Messages
447
Location
Midwest
Mark,

If a mold environment is a consideration here, what you may be reacting to are mold spores and their toxins. Predating my own experience with MCS and CFS, was exposure to living in a moldy house. I had to empty my house, and throw many things away, because I just couldn't touch them without taking a dive in health. (Of course I had to ditch the house and move) I still haven't recovered from all the clothing I lost, and most of the rest of my stuff that was in that house that I didn't donate to our local dump, has been in storage for almost four years now. Hoping that eventually they will either denautre or I can find a way to denature the toxins and spores. Until then, I won't go near that storage because of how sick it makes me.

When you mentioned your clothing, it reminds me of my own experiences, and yes, I sure can tell when mold comes onto my radar.

Laurie
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I've been reflecting on this Lisa. There is definitely some aspect of how clothes 'go bad' that I'm still missing, and as I think back, you could be right. There do appear to be sporadic 'contamination events' but these also tend to coincide with an exposure which means increased sensitivity generally, which makes it harder to track down the source of the problem because I'm over-sensitised to everything anyway.

Another confounding factor is that often I find new clothes cause the same range of irritation, from mild to severe, and even a pack of 6 theoretically identical shirts, say, can show variation. But a further complication I've recently discovered is that just one 'contaminated' item raises my sensitivity generally, body-wide, which has been causing me a lot of confusion previously.

Anyway: it does seem to fit that clothing frequently 'goes bad' after washing, particularly at higher temperatures. My memory also suggests that when things 'go bad' it's generally just one or two items from a set of washing but sometimes lots or nearly all of them. I might have a new set of clothing which lasts 2 or 3 washes and then they all start to degrade - I think you previously mentioned fibres degrading and that makes a lots of sense.

But the sweat thing basically goes back to experience with beds and bedding. Always it has been the case that on the 3rd or 4th night in a bed, I'm starting to itch when I lie in the areas where I myself have previously been lying during the night. It's less true now perhaps, but I'm almost certain that in the past I have been somehow sporadically shedding the 'infection' onto bedding, probably through sweat. Those events are very occasional I think, once every month or two perhaps, and they don't necessarily coincide with the obvious crazy night sweats, but I think they are related. My FIR sauna experience was similar: some sweats were just water, others had something else in them too...

So I'm continuing to mull over what you've said and I'll be monitoring it over the coming months. Occasionally contaminated water is quite believable, but I also have to always take into account that whatever it's 'contaminated' with is almost ubiquitous and can be found on chairs and sofas and clothing all over the place, so I tend to suspect the most obvious source of contamination of the water is via some item of clothing that I wash that has become contaminated. Anyway...I will monitor and report back...


Based on reports and my own experiences, it seems pretty clear to me that at least some of us sweat out mold toxin without its being broken down. This seems related to the problems with our detox mechanisms.

If you're particularly attentive, you may find that you can breathe on an item and have it go bad. (Though this may be more for people who have just started doing effective avoidance after a long exposure.)

But as far as I've heard, this kind of cross-contamination washes out pretty regularly.

I've heard other people say that they've washed clothes in what turned out to be bad water, and that some of the clothes went bad and others were more or less okay.

Generally you can't tell if the water is bad while it's still there making things wet. It's the residue that's bad.

Do you drink this water? I got horribly sick from bad water this summer.

I never have done laundry in water that turned out to be contaminated, but Erik did so. He said that the clothes continued to bother him for a long time afterward, even after washing in good water. So this stuff is persistent.

He said he was using distilled water for "just about everything" now. He may just be hand washing clothes.

Have you found that clothes from different countries bother you less vs. more?

Do you find that clothes tend to be more likely to go bad during certain seasons? Freshwater cyanobacteria seems to be more a summer phenomenon, I think. The "?" that grows in the sewers and then gets in the air becomes more problematic in winter (November-February) in many places.

Best, Lisa
 

shannah

Senior Member
Messages
1,429
I think Dr. Bell mentioned in his talk on XMRV last winter that NK cell function is responsible for contolling fungus/yeast. So it would makes sense that many of us would have issues with this.
 
C

Cloud

Guest
I think Dr. Bell mentioned in his talk on XMRV last winter that NK cell function is responsible for contolling fungus/yeast. So it would makes sense that many of us would have issues with this.

Interesting....the fungal infection on my back disappeared simultaneiously with improved NK cell function that went from 4 up to 29 with anti-viral Tx. It could have been due to a number of immune changes, but this makes sense to me.