Mold, Dr. Cheney and ME/CFS

[soulfeast]

Forebearance, Thank you so much for your kindness and info.

We have no clue how much stachy got out into the air in the house... no levels have been detectd in the air except 7 spores per cu meter in LR after the remediator left the moldy studs to the knee wall for us to rebuild on.. he had to come back of course adn take out. I dont understand how all this works.. I am confuse about mycotoxins and spores and stachy since no obviously high numbers. I am now second guessing wondering if its just the lyme (whch I dont test positive for and have not handle abx well with.. which I know is classic for biotosin illness, but also know lyme has a biotoxin).. wondering if it is just the babesia. Driving myself insane because of the stress this is putting on my family and because the new (transitional) home (new build my ffather built to sell) has fusarium in out door air samples. Just floored by this and not sure what to think or do. talking myself out of the idea that the house here is recycling spores and mycotoxins. The new house also tested about 1300 spores per cu meter for indoor air since the air has not been used and windows kept open. Our indoor air is better than that here except for the possibility that stachy spores are lying around in corners, papers, books, furniture.. and then no idea how much.

The moldy studs were clear coated twice with a good antifungal and Ive been told by someone who is seemingly very qualified that the clear coat most likely kept the stachy from going air borne until the studs were hopefully properly removed.

I wish it were simpler. Wish I knew what to make of the fusarium. Feeling totally knocked off my feet and devastated and the second guessing is truly making me insane. An inflammed brain is not helping the situation... lyme, babsesia, mold?

I have labcorp IgE Mold panel out.. I know just allergy.. and I think an IgM for stachy. Real Time Lab has my urine for mycotoxin testing. Hoping I can sneak myself into my kids appt with our dr and get a lab sheets for the shoemaker markers. I have the "dreaded" HLA..

And while I am rambling because I am so disoriented and lost at the moment... my daughter has moments of going blank, saying she cant think.. orthostatic intolerance on occassion, feeling woozy in some stores where she zones out, and chronic candida which cannot seemingly be touched by antifungals... wouldnt that sound like mold issues? She has been exposed to lyme and treated for it for 4 months which might have been a huge mistake because the candida will not go. Lyme or Mold? Her cd 57 was close to 800.. great for a lymie is about 200 or so. but her IgeneX has only a few bands and barely responsive. I know how this is interpreted in lyme land but looking at it from another perspective could it be that lyme really is not her issue and mold is even though we just know it was behind a shower wall with a cracked seam of grout and a small area of thin set where tiles fell off as the only way of escape? (unless it splurged into the wall cavity fomr time to time and got into vents which inspector never checked.. ) .. this is obviously tormenting me.. not having crystal clear evidence that your average person would go.. thats it!

Am I just blinded by the obvious which is not really helping me out by being more obvious.. as in the case of the missing spore evidence to make it all so crystal clear?

Oh yes, I've made this move. I did it about two years ago.

It took me three months to sort through everything and pack up and move. I was really sick at the time. I got as much help as I could beg and buy. I understand what you mean about giving up on things you were going to recycle and donate. You can't do everything in this situation.

Something I'm glad I did is I scanned my favorite pictures onto my computer and also copied my favorite music CDs onto it. Then I put them and some important documents onto my online storage. It's a comfort to know I can get them if I need them.

The hypersensitivity is like the guy in the grocery store who couldn't wear his old tie anymore. Stuff like that. It's a normal part of the healing process. At least until they invent a better way to get over mold poisoning. (well, actually, probably Dr. Shoemaker has some drugs that can treat it)

The thing that happens when you become hypersensitive is that luck plays a part in your life.

Some people move into a new place and are fine and proceed to get better. Other people, like me, move into a place that happens to develop a mold problem and have to move again.

So it could possibly happen that you'd have to move again at some point in the future, if as you said, something in your new environment becomes a trigger.

You can probably see why some people eventually give up on buildings altogether and just go live in a tent or an RV. Anything that's made out of wood and drywall could potentially grow mold on it. There are some wood-free RVs out there. But I hope your family doesn't have to go that far. (unless you want to)

It's a tough situation because on the one hand, you know it's a bad idea to stay in a moldy home. On the other hand, it's not a piece of cake to live with the hypersensitivity.

I guess there are quite a few people by now who have concluded that it's worth it to move and start over with nothing. I feel like it's been worth it to not feel like I'm half-dead any more. But it has been hard.

I'll be thinking of you!

Forebearance

 

[Forebearance]

Hi again soulfeast,

I know how difficult it is to make decisions when your brain is messed up.

Your daughter's symptoms do sound like some kind of biotoxin to me. Those could all be mold poisoning symptoms, for sure. I think slayadragon put a bunch of checklists on this thread about which symptoms could be mycotoxin-related.

If you get your C3a and C4a tested, that might give you a clue. Lyme toxins tend to raise one and mold toxins raise the other, if I remember correctly. I remember Dr. shoemaker using those cytokines to help him diagnose people.

The Lyme and mold symptoms seem to overlap a lot, since they both cause biotoxin poisoning. You could sure have both at once. It's totally unfair, but it happens. Especially to people with the "dreaded" HLA-DR haplotype.

I understand that you need to feel like you have enough objective evidence to support a decision to move. For me, knowing there were some species of toxic mold growing in my apartment, knowing I had symptoms of mold poisoning, and finding out I had a mold susceptible HLA-DR haplotype and enough abnormal blood tests to be diagnosable with mold poisoning was enough proof.

Besides doing the Dr. Shoemaker panel of blood tests, you could do an ERMI test of your current home, if you want. It's more accurate than air tests for mold spores. It's still not as sensitive as a person with CFS, but it's the best test that's available.

I don't know what to make of the fusarium, either. If your dad's house is better than your current house, in terms of mycotoxin levels, then at least it would be an improvement. Just don't buy stuff until you find an even better place.

It must be so hard to do this with a family, but I know you're not alone. Other families have been through this. All any of us can do is use our best judgment with the info we have.

Forebearance

 

[lono]

Soulfeast,

If you end up doing some of Dr. Shoemaker's treatments, please post about it. There are a number of people on this board who would be interested in hearing about it.

 

[slayadragon]

Thanks, Jenbooks. Saving that link. We found out that the home (new) my father had built to sell but we can transition in has fusarium in outdoor counts. I dont know how much is too much and have questions out.. if any of you know, please let me know. We were hoping to use this house as a base to look further and to a more arid place.

This is really interesting. Where is the home with the high outdoor Fusarium level?

Fusarium makes T-2, a trichothecene that has been documented extensively in the literature to be deadly. It may not be quite as bad as the satratoxin made by some strains of Stachy, but it has a lot more studies behind it.

Most of the T-2 studies have been done on ingested toxins. However, some recent studies suggest that inhaled mycotoxins are much more damaging than ingested ones. (Apparently this is partly because inhaled toxins can go right up the olfactory nerve into the brain, skipping the blood-brain barrier entirely.) Insofar as there are high outdoor Fusarium air counts, this would suggest that just breathing the outdoor air could make a big difference in how mold responders feel.

I've been back in the Midwest for the past two months. What I've found is that the rural areas of Indiana, Illinois, Ohio, Michigan and Missouri all have felt just awful to me. The cities (with the exception of Ann Arbor) have been substantially better.

On the other hand, the entire state of Kansas was the best place I've been on any of my travels. With the exception of a very few scattered bad pockets, it was absolutely wonderful.

The question is: Why would that be? What is it that's different about Kansas than from all these other farming states?

One thing that I found out in my readings is that Fusarium grows much better when it's in the presence of the herbicide Roundup. And now that genetically modified Roundup Ready Corn and Roundup Ready Soybeans are available, Roundup is sprayed in large quantities on a high percentage of fields in corn/soybean states.

Kansas has a few cornfields, but its primary crop is wheat. And it seems that we "Moldies" have a kindred spirit in wheat. When wheat gets hit with even a bit of Fusarium, it suffers from "Fusarium head blight" and dies. So thus, to my understanding, the farmers in Kansas avoid using Roundup at all, in order to keep the Fusarium from harming their wheat crops.

Of course, agricultural companies have tried all kinds of things to kill off the Fusarium. This seems to work to some extent, but also causes the Fusarium that's there to release even more toxins as a defense mechanism. Too many toxins to be tolerated by the wheat anyway.

This past weekend, I went out to a town called Galena, on the Illinois/Iowa border. Absolutely nothing there but cornfields and a few golf courses.

I've gotten to the point where few buildings (even ones that are overtly moldy!) bother me very much, but the outside air over the weekend (when it was cloudy and muggy) was another story. I kept thinking that I didn't understand why I could be so bothered and everybody else be okay.

But when I looked around, it seemed like all the local people were in very poor health and feeling quite miserable. This contrasted greatly with other places I've been over the past two years (e.g. Arizona, Utah, Colorado, New Mexico, Nevada, Wyoming), where people seemed much healthier regardless of their financial status, exercise habits or customary diet.

Then I had a 25-year-old guy, in apparently good health, complain spontaneously to me about how bad he had been feeling over the weekend. "It's awful," he said. "You can barely stand to be outside."

Another guy, the same age, said that he felt fine. So I don't think it's everybody. Maybe Shoemaker's right and it's 25% of people.

But it's not just the few of us who have CFS, I don't think.

I'm not absolutely certain that the problem in Galena and the rest of the Midwest is with Fusarium. It could be another toxic mold, or maybe a toxic cyanobacteria. I feel pretty crappy when I drive or walk by ponds or rivers covered with that bright green crap, for sure.

It would be interesting to do some outside air tests in the places that I feel really bad and see how they come up though.

Best, Lisa

 

[richvank]

This past weekend, I went out to a town called Galena, on the Illinois/Iowa border. I've gotten to the point where few buildings (even ones that are overtly moldy!) bother me very much, but the outside air over the weekend (when it was cloudy and muggy) was another story. I kept thinking that I didn't understand why I could be so bothered and everybody else be okay.

But when I looked around, it seemed like all the local people were in very poor health and looked quite miserable. This contrasted greatly with other places I've been over the past two years (e.g. Arizona, Utah, Colorado, New Mexico, Nevada, Wyoming), where people seemed much healthier regardless of their financial status, exercise habits or customary diet.

Then I had a 25-year-old guy, in apparently good health, complain spontaneously to me about how bad he had been feeling over the weekend. "It's awful," he said. "You can barely stand to be outside."

Another guy, the same age, said that he felt fine. So I don't think it's everybody. Maybe Shoemaker's right and it's 25% of people.

But it's not just the few of us who have CFS, I don't think.

I'm not absolutely certain that the problem in Galena and the rest of the Midwest is with Fusarium. It could be another toxic mold, or maybe a toxic cyanobacteria. I feel pretty crappy when I drive or walk by ponds or rivers covered with that bright green crap, for sure.

It would be interesting to do some outside air tests in the places that I feel really bad and see how they come up though.

Best, Lisa

Hi, Lisa.

I don't know if this is relevant, but galena is the name of the mineral lead sulfide. I googled the town of Galena, and I see that it was in fact named for this mineral, which was mined in the hills near the town. I'm wondering if the general state of poor health you described there could be associated with lead toxicity.

Rich

 

[tahoma]

So curious about this conversation. Does anyone have any input on western Washington and outdoor mold?

 

[slayadragon]

Hi, Lisa.

I don't know if this is relevant, but galena is the name of the mineral lead sulfide. I googled the town of Galena, and I see that it was in fact named for this mineral, which was mined in the hills near the town. I'm wondering if the general state of poor health you described there could be associated with lead toxicity.

Rich

An interesting thought.

But it's not just this particular town where people seemed in poor health. It's the agricultural areas in the whole Midwest, in all the states I mentioned.

It's even more apparent to me in the Indiana town (Greenfield, 30 miles outside of Indianapolis) where I grew up than in Galena. People there have far more money than in most of the western towns where I've spent the past two years. They're educated, they have what I would consider to be a good take on life, and they care about their health. A lot of them live in the country and then commute to good jobs in Indianapolis.

On the surface, it seems like these folks couldn't possibly care about their health, because they're overweight and don't exercise much. I think this is reversing cause and effect though.

Keep in mind our "guiding force" knowledge that CFSers can't exercise......unless they're in a low-mold environment. That's how Erik got to the top of Mt Whitney all those times: by subtracting out the mold.

What I now believe is that actually, NOBODY is capable of exercising safely when in the presence of more biotoxins than their bodies can handle. For CFSers, the amount that we can handle is less than what sticks to our clothing after being run through the dryer in most laundromats. But people who aren't (yet) as sick as we are have their limits too.

Some people who aren't biotoxin responders can exercise almost anywhere. But if people feel bad when they try to exercise (say, in a place with a high Fusarium count), they're going to be less inclined to do it.....even if their doctor says it's a good idea and they objectively _want_ to do it.

Ritchie Shoemaker talks in his books (e.g. Mold Warriors, Ch. 4) about the physiological changes that cause people with biotoxin illness to gain weight. In addition to the ones he describes, I think it may be that since sequestering toxins in fats is "safer" than sequestering them in organs, our bodies may bulk up with some extra fat as a functional defense mechanism when our "toxic tanks" start to get full.

I spent those two days in Galena with a rip-roaring headache, huddled inside with a HEPA filter going full-blast. (This was an inadequate emergency measure, not a solution! Filtration is no substitute for avoidance.) I drank seven cans of Coke over a 24-hour period, since the caffeine and sugar helped some.

Even if I didn't fall into CFS again, merely doing those remediation measures would make me fat and out-of-shape in no time whatsoever. Out in Colorado, I spent at least a few hours every day exercising and never had any desire whatsoever for soft drinks or desserts. My personality didn't change (I would have loved to have been back in Colorado climbing mountains that weekend), but my environment exerted an effect.

It's not just Galena that makes me feel this bad, in this exact same way. All the rural areas of those states are just as bad. Some days are much worse than others, and some even feel fine. But I think over time, it would just add up.

Dr. Guyer, who practices in Indianapolis, suggested to me 2 1/2 years ago that instead of taking off for the Godforsaken wilderness, I create a "clean room" for sleeping using a bunch of air filters and negative ion generators. And of course, if I'd stayed in the Midwest, I could have kept getting IV's and hyperbaric treatments at his clinic. Undoubtedly those things would have been better than staying in Indiana and doing nothing. I'd never have gotten well that way though.

(He told me yesterday that he'd never seen anyone like me - "the sickest of the sick" - get anywhere close to full wellness using any strategy, so it seems he's in agreement with me. And as CFS doctors go, he's absolutely tops. So if he's not getting folks at my level of illness well, I'm not surprised that nobody else is either.)

All in all, the past 2 1/2 years have been a real eye-opener for me.

I started off thinking that I and at least a few other CFSers were weirdly affected by mold, which was not at all an issue for other people.

Now I think that mold is a big issue for a high percentage of people, and that CFSers are just farther along on terms of just how terrible of an issue it is.

I would rather it just be us. But unfortunately, I don't think it is.

Best, Lisa

 

[tahoma]

Lisa:

Where in CO did you find to be a mold free zone? I thought you said Telluride was bad. Anywhere in CO that felt good to you?

 

[soulfeast]

Thank you for the supportive words, Forebearance. The mold was remediated but we are leaving anyway. We might do an ERMI but I hear you can judge by that either other than you will at least get some specific species.

Lisa, The fusarium was low and I checked with an environmental specialist who said that it was not as dangerous as part of the natural habitat. So I dont know. I am so tired of being afriad. I lived there for a while about 15 years ago and felt ok then, but how knows. There are new houses here and I dont think round up has been used.. if it has, its on the sod. My parents house was positive for low amounts of outdoor fusarium but my sisters tested neg. I honestly dont know what to make of it other than this is the transitional place out of our home and we will work from there. Furniture is free. The house is free. Major expsnse will be a good hepa vac and replacing computers, one TV, clothes (going cheap), bedding. It all adds up and that is frightening. I want to get a few austin airs and hope they (the computers and the hepa vacc) will not be contaminated by low counts of fusarium in out door air and if so they will be ok. It was a bit heartbreaking to see this in the sample.

lono, I'll be happy to share my tests results and treatments. My MD is not experienced in this but is very smart and willing to take the plunge.

 

[slayadragon]

Lisa:

Where in CO did you find to be a mold free zone? I thought you said Telluride was bad. Anywhere in CO that felt good to you?

Just about all of it, actually. Though I'm suspicious about ski resorts in general, and haven't been to all of the ones in Colorado, so I can't say for sure.

Telluride and Ridgway were really bad.

However, Cortez/Durango/Pagosa Springs were great. Colorado Springs and the surrounding area seemed fine. The northern and eastern parts (more flat, more hay/wheat type crops) were great. Grand Junction was fine. Estes Park (near Rocky Mountain National Park) was great. Boulder may have been okay, though I was there only very briefly.

Denver was bad, even as cities go. I believe that the area from Rifle to Glenwood Springs to Aspen used to be okay (when I used to go there a decade ago and felt good), but it wasn't very good a year ago.

-Lisa

 

[slayadragon]

Thank you for the supportive words, Forebearance. The mold was remediated but we are leaving anyway. We might do an ERMI but I hear you can judge by that either other than you will at least get some specific species.

Lisa, The fusarium was low and I checked with an environmental specialist who said that it was not as dangerous as part of the natural habitat. So I dont know. I am so tired of being afriad. I lived there for a while about 15 years ago and felt ok then, but how knows. There are new houses here and I dont think round up has been used.. if it has, its on the sod. My parents house was positive for low amounts of outdoor fusarium but my sisters tested neg. I honestly dont know what to make of it other than this is the transitional place out of our home and we will work from there. Furniture is free. The house is free. Major expsnse will be a good hepa vac and replacing computers, one TV, clothes (going cheap), bedding. It all adds up and that is frightening. I want to get a few austin airs and hope they (the computers and the hepa vacc) will not be contaminated by low counts of fusarium in out door air and if so they will be ok. It was a bit heartbreaking to see this in the sample.

lono, I'll be happy to share my tests results and treatments. My MD is not experienced in this but is very smart and willing to take the plunge.

It sounds like the outdoor air where you're moving should be fine. That choice sounds a lot better than where you're at now, for sure!

I'm only especially concerned with one particular type of outdoor toxin, that's present in the sewers in a few specific areas. It's not Fusarium, and you've not given me any reason to believe that it's present where you're going (even though I can't remember exactly where it is).

I just thought the fact that the mold tester was interested in outside air counts - and of that particular mold - was interesting.

Best, Lisa

 

[soulfeast]

Hey Lisa.. the inspector didnt flag it at all.. he also didnt flag the stachy in my parents house, which makes me trust inspectors less, but may be they see so much and so much more (their count was 7 spores per cu meter or one spore on the slide) that is was nothing to him. I dont know.

I do have some lab work back and not sure if this is the place to post.. Let me know if I should make another thread or if one already exists?

My IgE mold panel from labcorp is negative (yet my lungs are so reactive to the dust here and possible the outdoor air here in our woods). The stachy IgM or IgG was negative.

Real Time Lab results for mold toxins were all NEGATIVE.

Ive been sleeping next to our bathroom for years with stachy growing behind the tiles that had a long crack in grout all the way down the knee wall.. so I dont know. I should be happy but I am so disappointed. Would be nice to have something to go by.

Next step: the Shoemaker labs.

 

[acer2000]

We will either store or trash belongings and start again. Ive started testing including Real Time Lab's my mycotoxin test, labrcorp IgE and IgM (for stachy) and shoemaker's bio markers.

Can you tell me more about the Real Time Lab mycotoxin test? What does this look for? Is it actually a blood test for exposure to mold toxins? I am kind of interested in this, even though I don't have the susceptible genotype, I think I have been exposed to mold in the past and I'd like to figure out if I still have the toxin in my system.

 

[slayadragon]

Hey Lisa.. the inspector didnt flag it at all.. he also didnt flag the stachy in my parents house, which makes me trust inspectors less, but may be they see so much and so much more (their count was 7 spores per cu meter or one spore on the slide) that is was nothing to him. I dont know.

I do have some lab work back and not sure if this is the place to post.. Let me know if I should make another thread or if one already exists?

My IgE mold panel from labcorp is negative (yet my lungs are so reactive to the dust here and possible the outdoor air here in our woods). The stachy IgM or IgG was negative.

Real Time Lab results for mold toxins were all NEGATIVE.

Ive been sleeping next to our bathroom for years with stachy growing behind the tiles that had a long crack in grout all the way down the knee wall.. so I dont know. I should be happy but I am so disappointed. Would be nice to have something to go by.

Next step: the Shoemaker labs.

Stachy makes a heavy sticky spore that quickly falls to the ground and disintegrates into spore fragments. Finding even one spore on an air test is indicative of a major problem, therefore. The spore fragments are just as poisonous as the airborne spores.

I'm not sure how easily Fusarium goes airborne, or if it's a problem when no spores are found in the air. I will try to find that out.

It's disturbing to hear that your IgG test for Stachy was negative, since you know you've been living with it in your environment. That makes it seem like that's not a very reliable test.

The Shoemaker tests have their own limitations, as discussed earlier in this thread. But I think they're worth doing.

Erik advises against any tests except the unmasking one for precisely the reason that you're suggesting. All of these tests have the potential of making people believe there's no problem when there actually is one, or being explained away.

Best, Lisa

 

[soulfeast]

Here is the link to Real Time Lab:

http://www.realtimelab.com/

The test you first order if the mycotoxin urine test. The DNA tests of tissue could follow.

Im not sure about one urine sample as opposed to a 24 hour urine sample. I think this should be a 24 hour sample. What if you are not excreting toxins at that time or just not excreting them? Is that a possibility?

Lisa, thank you.

The stachy was airborne in LR after remediation.. they brough scrubbers in after that and I dont know if that would pull spores from surfaces. The stachy was behind tile with only the open side seam up the knee wall as a means of escape.. so not sure how many spores got out.. it was growing on the top of the knteewall and possible down the front side near the seam. The tile may have prevented it from getting into air cavity of wall and thus disperse thoughout wall cavity. No idea and that is what is driving me insane. It was also found on second post remediation 4 months later in MBR carpet (dry) coming out of bathroom at "low" levels.

My husband says we have made up our minds and set our plans and lets go and see what happens while I amseconding guessing everything.

I have RAD. Something is causing this and maybe its the cats. Ive never had cats for any length of time until my daughter started collecting them.. we have 4 now. No IgE to cats, but.. who knows any more. I dont think lyme of babesia causes RAD but babesia can cause lung issues and air hunger. Yet my last babesia test was also negative while first one 3 years ago was positive. This is maddening.

XMRV test next.

 

[soulfeast]

Just talked with ERMI lab and fusarium that carries the T2 toxin is rare and there are many other forms of fusacium, which is a common outdoor mold but not usually found in high numners like A/P and others.

 

[acer2000]

Thanks for the info on the mycotoxin test. Its described in their webiste as:

Tricothecenes are evaluated by using Enzyme-Linked ImmunoSorbant Assay (ELISA). The test at RTL has been validated as a qualitative test. Thus, RTL reports whether tricothecenes are PRESENT or NOT PRESENT.

Aflatoxins are evaluated using ImmunoSorbant Columns containing antibodies to the group of aflatoxins (B1, B2, G1, and G2). Results are reported as PRESENT or NOT PRESENT.

Ochratoxin A is evaluated using immunoSorbant Columns containing antibodies to the Ochratoxin A. Results are reported as PRESENT or NOT PRESENT.

Specimens that have been validated are urine, sputum, nasal washes, tissues.

And then in their booklet:

...Mycotoxins can now be measured using the competitive Enzyme Linked Immunosorbant Assay (ELISA). Such an assay can be used to determine levels of toxins in amounts as low as 0.5 parts per billion 2 (ng/dl). Such mycotoxins can be measured in human body fluids and tissues. Once measured, the patient involved can be further evaluated to determine history of exposure to molds/mycotoxins and the symptoms involved with these toxins which are affecting the human body. Unlike previous laboratory 16
April 2010
tests used for evaluating mold and mycotoxin exposure (e.g. salivary and blood immunoglobulin levels), this group of tests can be used to measure the actual mycotoxin and their levels in the tissue or bodily fluid.
Such levels can be measured over time, so that progress with “detoxification” can be monitored by health care givers and their patients. Mycotoxin detection is safe and well controlled. If mycotoxins are present, they affect the Nrf2 and Keap1 which ultimately affect oxidative stress response in melanocytes and keratinocytes of the human epidermis, as well as in epithelial cells of lung, kidney, and gastrointestinal tract, and astrocytes in brain.

Laboratory measurement of various body fluids of patients with a history of mold exposure demonstrates a positive finding when compared to control groups of unexposed patients. Unexposed patients have no mycotoxins in the tested body fluid or tissue. Mycotoxins have been documented to accumulate in tissues such as liver, kidney, and brain after an environmental exposure to molds and/or mycotoxins. The presence of such mycotoxin accumulation can be seen in specific organs (i.e. liver, brain)...

Are you working with a doctor who is familiar with mold illness who ordered this test? How did you find out about it? How accurate is it? I am curious what shoemaker says about it. How did you decide that the urine test is the first one to take (as opposed to blood, etc..)?

 

[soulfeast]

I did the leg work. My MD is open minded and smart. So this is new territory for both of us. I called RT lab and asked. I dont think they have a blood test for mycotoxins. You would generally not test for specific mold DNA if no mycotoxins present.. as I udnerstand. The blood tests I know of are IgE and either IgG or IgM through labcorp, possbly Quest. IgE is a panel. The rest you order separately for each mold. I only ran a stachy.

RTL sent me a kit and send info to my MD.

How accurate? I dont know. Wish I did. I was concerned that it is a random urine as opposed to 24 hour and that is a urine. Not sure if blood would be more accurate. The toxins are stored in fat? So.. possibly either could be inaccurate but I am just guessing. Would you be excreting if you carry one of shoemaker's HLA types?

 

[soulfeast]

Started a biotoxin/mold illness thread:

http://www.forums.aboutmecfs.org/showthread.php?7069-Biotoxin-Mold-Illness&p=114362#post114362

 

[slayadragon]

Dr. Cheney's Recommendation

I've mentioned this elsewhere on the board, but it occurs to me I should put it here as well.

A few of weeks ago, Dr. Cheney sent out a note about toxic mold to his patients through their online forum.

I've not read the note. Apparently those communications are confidential. (If someone would like to break protocol and send it to me, I'd be interested in reading it.)

My understanding is that the note stated that even though toxic mold was not the cause of CFS, patients should look for toxic mold in their homes and should consider moving if they found it.

Remediation alone might not be enough to provide relief, he suggested.

I agree with all of this, and am really happy to have his acknowledgement that this is an important factor for us.

However, I would like to encourage people who are following Dr. Cheney's advice to consider leaving their possessions behind or putting them aside for a trial period.

Unfortunately, the contamination on items that have been exposed to moldy places for long periods of time can be enough to keep some of us wholly sick indefinitely.

The majority of homes are reasonably okay for CFSers, but a bunch of contaminated belongings is disastrous.

The other consideration is where people are living.

There's a particular type of outdoor biotoxin - apparently a yet-unstudied strain of poison cyanobacteria - that is present in certain places.

It produces a specific group of symptoms. These can include:

* Heart pain (in particular, a feeling of a needle through the heart).
* Heart palpitations.
* Chest pressure (a feeling of a dagger through the chest or a marble - sometimes actually swollen - at the sternum).
* Excruciating headaches (migraine-like but not one-sided).
* Extreme photophobia (light sensitivity).
* Extreme noise sensitivity.
* Cognitive problems that go beyond brain fog (e.g. inability to add numbers or recognize words)
* Weird memory losses (like the inability to remember the name of one's hometown or to find the way home)
* Seizures or "white-outs" (where the brain goes 100% blank for extended periods of time, sometimes even when a concerted effort is being made to bring up thoughts)
* Severe trembling.
* Organ pain (particularly kidney pain).
* Strong suicidal feelings.
* Convulsions.
* Extreme MCS.
* Marked gait problems.
* Inability to sit or stand up.
* Extremely deep skin "dents."
* Feeling of skin being burned.
* Sore throats that make eating difficult or impossible.

If you read the descriptions of the Incline Village illness in "Osler's Web," those are the symptoms you're looking for.

In addition to these specific acute symptoms, even short exposures to this poison seems to cause longer-term effects (including extremely severe immune dysfunction - which, btw, is why this topic is in the XMRV section).

These are in addition to the more run-of-the-mill CFS symptoms that (for instance) I suffered when in my moldy house in Chicago. Note that people can be close to death in a moldy house, but not get those symptoms above. They're specific to the outdoor biotoxin.

This stuff is present to a scattered extent in various places, but it's particularly problematic in a few of them.

These include the San Francisco Bay Area (though apparently not so much SF itself) and certain other parts of California; the Lake Tahoe area; Dallas; Ann Arbor, MI; and Telluride/Ridgway, CO.

Very occasionally, it is present inside buildings as well.

Insofar as people are exposed to more than a touch of this outdoor contaminant on even an occasional basis, they will have a very difficult time making progress. I am not able to visit these places even briefly, even though I have recovered to the point of being able to live in Chicago and go into the vast majority of buildings without substantial consequence.

If people are having the sorts of symptoms listed above, a move to a totally different location (e.g. another city or state) might be required to make progress.

Insofar as people can find a reasonably mold-free residence (by normal standards), put aside their contaminated belongings and not live in a place with this particularly bad outdoor contaminant, they should start to be able to benefit from the other treatments that they are pursuing.

Erik's managed to get well just through mold/biotoxin avoidance, which provides good evidence that biotoxins are an important component of this illness. Unfortunately, he's made it seem like this is an all-or-nothing pursuit.

Based on what I've seen, starting with "moderate" avoidance (described above) and then pursuing other courses of treatment can be really effective at allowing people to get better or well too.

That's why I'm really happy that Dr. Cheney has made this recommendation.

Also, if anyone here has that cluster of symptoms above, or knows someone who does, would you please let me know? I'd like to be able to figure out where this stuff is without having to go find it myself.

Finally, thanks very much to Gerwyn his work on the topic of the role of mold and cyanobacteria toxins in our illness. Things have started to become a lot more clear to me since he's become involved.

Best, Lisa

slayadragon at yahoo