Could there be mold issues?

[antares4141]

My parents aren't willing to do (or find) anything, especially the level of effort it would require to properly do something, and if not done good it's not likely to be very effective. I guess keep looking for a place that looks good. and that's open to a few weeks to try and not long term rental either.
That's about it, too sick to get to a place to get better. Need to get well first. so ironic.

What about Texas this winter? I apparently have a relative there, may be able to stay there a few weeks if I can get there...

I personally put very little stock into location. (I may one day change my mind on this) It's the structure I am living in that I care about the most. If the one in texas is decent I would consider it. A long way to go though. I always worry about places where it get's hot cause you usually have to run a/c and that can introduce some problems. At least they seem to be for me. So if you could do texas in the winter and canada in the summer that might be a start. If the house is noticeably musty you really need to focus on getting out of it. I'm sorry for your situation. To simply say that it sucks would be a gross understatement.

 

[sprdave]

So it looks Im going to Texas for a first (past Michigan)... Not sure if it's going to work as a "test", but even to just go there and I might (probably) disappoint some people if I don't lol. At least it's somewhere/people to go to and not deal with stuff from scratch for now...and leave some of the snow behind...
I just have to decide how far I want to go with it...I have just ordered clothes to be delivered there (good deals to be got in U.S.). I guess I should bite getting a jacket/coat and shoes... Not sure about laptop, the one I have I just got for traveling and has only been used a few hours here...

Back to MUSES syndrome, my dr here had no idea what that was, but He did strangely go along with doing the blood gases tests...So I went into emerg when He was there and got my artery stabbed (and vein) and got the results. There's more, but the artery PO2= 90mmHg and vein PO2= 45mmHg for a difference of 45mmHg, the art sO2 97% and vein sO2 76%. The PO2 difference is supposed to be >55 (artery ok but vein should be lower) according to the MUSES info. And the saturation is supposed to drop more. Supposed to indicate poor oxygen uptake (tissue hypoxia). Interesting, I wonder what the doctors have to say...probably that Im normal... He also reluctantly did the C4A complement.

 

[antares4141]

So it ld clothantly did the C4A complement.

Ironic, I'm planning a trip up to Montana to be in the snow. Just want to see if the dust and pollen and mold in the air here in south central nm has anything to do with my symptoms. I'm guessing no but there have been so many times I came back here from fl or nc expecting to get better and got a lot worse. I've attributed it to other factors I've adressed though. Still seem to be better off overall since my 20 day course of abx. Way less post exertional malaise, more stamina, less brain burn and fybro. Unfortunately with this illness seems one has to jump through a series of hoops all at the same time to get a noticible improvement that lasts. Hoping to leave in a week or so, still have a lot of preparation left though.

 

[sprdave]

So who knows about American Medical Labs? Sounds like they have been doing the mycotoxin testing... but they have this endotoxin test, and now you can add their mycotoxin case study to that for another $150, and that's for 11 different mycotoxins vs the 3 RealTime Labs does (and American Medical used to do).

 

[sprdave]

Im wondering about getting some tests like HLA DR (and others dr.s like shoemaker recommend). Anyone know what HLA DR test Im looking for? The Quest form lists HLA DRB1 and HLA DRB 3,4,5...Labcorp website lists HLA DRB1,3,4,5 Intermediate resolution... Are either of these (or both) what Im looking for?

 

[out2lunch]

You might want to try the free VCS test here: http://vcstest.com
I consistently fail it, whereas I passed Shoemaker's. My GF passes the free one every time, and she's not ill. So as far as we're concerned it seems to indicate something consistently.

I did this test today. My left eye biotoxin score was 94% correct, and my right eye biotoxin score was 100% correct. I prefer the results display with this test to see which sets of bars I got right and which ones I didn't. Ritchie's results don't indicate how you failed on each image, just that you failed.

I've done Ritchie's VCS test both online and the paper version in my doc's office, which have been both positive and negative over the years, depending upon what I'm doing for treatment. I'm encouraged that all but one set of bars in the two biotoxin columns were correct, given the treatment I've been on the past few months. The paper based VCS test done in my doctor's office last year did not produce results this good.

BTW… does anyone know about the other cycles per degree (CPD) frequencies measured in this test that are not biotoxin related? Such as the first column, 1.5 CPD? I was incorrect for the last five sets of bars at the beginning of the right eye test. I flat out could not see them. It was just a block of grey. I could easily see all of the fat lines in my left eye, but not my right. And I had no trouble seeing the skinnier lines that followed.

Any idea how floaters affect this test? I have a very large cloud floater in the central vision of my right eye. It's like looking through a very light grey fog cloud all the time. I didn't have this floater the last time I did the VCS test, so I'm wondering if this is the reason I couldn't discern those fat lines.

 

[AndyPandy]

@out2lunch have you been checked out for eye conditions?

Macular degeneration affects central vision. It's in my family, but I don't have it although I have the genes.

My floaters move around, rather than staying in one place all the time.

Best wishes Andy.

 

[out2lunch]

@out2lunch have you been checked out for eye conditions?

Macular degeneration affects central vision. It's in my family, but I don't have it although I have the genes.

My floaters move around, rather than staying in one place all the time.

Best wishes Andy.

Thanks for the reply, Andy.

No, I don't have macular degeneration. I've been checked out by two eye doctors in the past six months, one was an M.D. at Stanford Eye Clinic. What I do have, and it sucks, is vitreous detachment. The floater in my right eye used to be above my central vision until the vitreous further detached a few months ago. Now it's smack dab in the middle, with a nice little black Weiss Ring above it. Hopefully, that sucker won't drop down in the future and block my vision even further.

I know floaters can affect visual contrast, but I didn't know how or to what degree. I'm guessing this is how contrast gets affected by floaters.

 

[Soundthealarm21]

She said my C4a test would be high if it was (mine was perfectly fine as usual for tests), and basically it was closed as if that test is definite.

Yes that's pure bullshit. That test does NOT determine whether you have current exposure or not, I don't care what doctors say. I stayed in a mold riddled house for 6 extra months because we were under some false impression that there wasn't any due to that test being perfectly normal.

If you smell mold it's there. Best thing to do is get an air quality test by someone reliable.

 

[Soundthealarm21]

The widely accepted best test to determine whether a home contains dangerous toxic mold is called the ERMI. It is not 100% foolproof either, but it is much more reliable than other available tests (such as air tests or Petri dish tests), which should best be considered useless.

Going to have to respectfully disagree. According to ERMI we had in the top 95% of houses in the country. The air quality test we did found Stachy. Air test is definitely not useless and ERMI is not close to full proof in my experience.

 

[Dufresne]

I second the bit about C4a. Mine was only high-normal 4 days out of a terribly moldy house and I know without a doubt that place was making me sick(er).

I also passed a VCS test when I probably shouldn't have. The tests are fine but a trial of avoidance is better.

 

[out2lunch]

I second the bit about C4a. Mine was only high-normal 4 days out of a terribly moldy house and I know without a doubt that place was making me sick(er).

I also passed a VCS test when I probably shouldn't have. The tests are fine but a trial of avoidance is better.

I'm one of these outliers that functional medicine docs love to hate when it comes to testing. I've got the double whammy of two haplotypes against me; one multi-susceptible, the other chronic Lyme. I also have several abnormal tests like TGF-b1, MSH, ADH, VIP, C4a, and really high ochratoxin @ 9.38. (However, my VEGF and MMP9 have always been perfectly normal, even years ago when TGF-b1 was over 11,000.)

Recently, I redid the online VCS test on Ritchie's site and I'm now negative in both eyes (16 left, 18 right, D column only). This is a slight improvement over the previous online test and in-office paper test from last fall.

Ten years ago when I started VCS testing, I was unbelievably positive, with left eye score of 5 (3 C column and 2 D column), and right eye score of 13 (6 C column and 7 D column). My other tests and symptoms were much worse back then when I was living in an old apartment that was swimming in aspergillus dry wall damage. No doubt about why my VCS test failed so hard.

But fast forward to the present, and I'm really stuck to understand my present test results. How could I be negative on my VCS with ochratoxin five times above the normal range cutoff? (FWIW, both aflatoxin and trich were negative.) Wouldn't that much ochratoxin swimming around in my system be affecting my retina and optic nerve?

Apparently, there's a little war going on between some of the more well-known functional medicine docs whom we've discussed on the boards and "Dr. Cobbler" regarding ochratoxin. Seems that Dr. Cobbler believes that food contamination with ochratoxin can contribute to results like mine, because our bodies are so poor at eliminating mycotoxins in general. But other functional medicine docs (including mine) think Dr. Cobbler is "out to lunch" on this. (Ha! Finally managed to work in my screen name. )

I'll put my question to the community: do you believe, based on your personal experiences with all of these tests, that Dr. Cobbler is correct about food contamination interfering with ochratoxin results? That some of the contributing source of the mycotoxins is external, and not totally caused by internal fungal infection? And that's why folks like me have normal VCS tests in spite of very high ochratoxin levels?

The reason why I've wondered about this, is because of a diet experiment I did over a decade ago, when I was living in that overgrown rent-controlled aspergillus mold plate. I managed to do a very strict anti-mold diet for one month. It made me climb the walls out of sheer boredom, not being able to eat my favorite foods. But… I felt physically better on the diet. Not significantly better, but enough to notice improvement.

How could something like a mold-free diet make that much of a difference in my symptoms while living with such high levels of mold in the residence? Not to mention I did this a couple of years before my first VCS test from hell, and before trying CMS for the first time.

Anyone else have similar experiences with mold in their diet? Or outrageously high ochratoxin results in spite of negative or nearly-negative VCS tests?

Thanks!

 

[Dufresne]

@out2lunch

I've not done any toxin identification, so I can't answer your first question.

Were you by chance on a low-carb diet when your MMP9 and VEGF were normal? Also the only time I noticed symptoms associated with higher scores of these markers was when I first started using binders in a relatively clean house. Never while using binders in a bad environment. For me, and I've heard this from others, there's a big difference between environmental re-exposure and old toxins being mobilized in one's system. Even if those being mobilized are presumably from the problematic environment in question. And I'm not saying one is worse than the other, just that they can be different.

There's also the inflammatory differences between single toxin exposures and multiple exposures. I remember slayadragon posted a study which suggested a symbiotic worsening of symptoms from two toxins, or one toxin and another source of oxidative stress. That was the gist of it as I remember. So even while you're living in a moldy house, you're okay so long as your gut is not leaking substantial LPS or until you contract borrelia, develop a candida overgrowth, etc. Perhaps this isn't exactly what you're looking for, but it's how I try to explain to myself the complex when it doesn't make sense. In essence, there are always other variables at play.

 

[out2lunch]

@out2lunch

I've not done any toxin identification, so I can't answer your first question.

Were you by chance on a low-carb diet when your MMP9 and VEGF were normal? Also the only time I noticed symptoms associated with higher scores of these markers was when I first started using binders in a relatively clean house.

To answer your questions about low carb… I've done Atkins in the past when I did my first test, but have moderate carb intake now, about 120g daily, which I've done for several years. Recent repeat testing showed MMP9 and VEGF to be about the same. Not sure if my current diet qualifies as "low carb" regarding these tests, but I guess that's a possibility.

And as long as you're on the Ritchie list of biomarkers, the other test I've never been abnormal on, even being borderline overweight (3 pounds over the BMI cutoff for normal weight), is leptin. I'm actually below the normal range for my BMI. And that surprises me, given how many of us have the opposite problem of elevated leptin levels and leptin resistance. I've probably had low leptin secretion my entire life, given how skinny/underweight I was in my youth. Being "overweight" is something that developed when I became hypothyroid several years ago.

For me, and I've heard this from others, there's a big difference between environmental re-exposure and old toxins being mobilized in one's system. Even if those being mobilized are presumably from the problematic environment in question. And I'm not saying one is worse than the other, just that they can be different.

But I still don't understand how that affects the urine test if the total number of toxins being circulated and pushed out through the kidneys is outrageously high but the VCS results are not as equally bad.

This is my own personal pet peeve with the urine test. No one who advocates for urine testing (like my doc) wants to compare those results with past and current VCS results. Why not? If the urine test results are being used to advocate a specific treatment, then why not utilize VCS history as a way to measure success of that treatment?

There's also the inflammatory differences between single toxin exposures and multiple exposures. I remember slayadragon posted a study which suggested a symbiotic worsening of symptoms from two toxins, or one toxin and another source of oxidative stress. That was the gist of it as I remember. So even while you're living in a moldy house, you're okay so long as your gut is not leaking substantial LPS or until you contract borrelia, develop a candida overgrowth, etc. Perhaps this isn't exactly what you're looking for, but it's how I try to explain to myself the complex when it doesn't make sense. In essence, there are always other variables at play.

Actually, that does make sense. Simply living in the moldy house isn't what makes the VCS test positive. There are other immune factors at play which determine how much of the mycotoxin load is driven into neural tissue. And that's the big difference between living in my current place and the previous place 10 years ago. I had active Lyme disease back then along with poorly treated hypothyroidism and allergies. Lyme is gone (Advanced Labs, iSpot, and IGeneX are all still negative), allergies have lessened, and hypothyroidism is successfully treated. So my VCS test is mildly positive because all those mycotoxins aren't being driven into my tissue as much as they were previously when my VCS was hugely positive during active Lyme disease.

Now I feel the urine test makes even less sense to use, given that circulating mycotoxins don't necessarily reflect tissue burden of those toxins. You could be exposed to plenty of ochratoxins that would spill out into the urine in high volume, and still have a negative VCS test or one that's barely positive like mine. Seems to me the true goal here is keeping the mycotoxins out of the tissue and not necessarily out of the body, since eliminating exposure would be virtually impossible to achieve without a total caveman lifestyle.

It's not the mycotoxins themselves but how our bodies respond to them by soaking them up like sponges. If you can keep your body from becoming a mycotoxin sponge, then it seems to me that the mycotoxin count becomes less of an issue.

 

[slayadragon]

Going to have to respectfully disagree. According to ERMI we had in the top 95% of houses in the country. The air quality test we did found Stachy. Air test is definitely not useless and ERMI is not close to full proof in my experience.

Yes, it certainly is the case that the ERMI is not 100% accurate and may miss severe mold problems.

I do continue to believe that it is more accurate than any of the other commercial testing that is available, however.

Air testing routinely does not pick up on what seems the worst kind of mold for those with chronic neuroimmune illness, Stachybotrys.

That kind of mold falls quickly to the ground, where it disintegrates into fragments that are blown all around the house and not recognizable by air tests.

In general, my suggestion is that it's best for people to get to the point where they can immediately tell if a building is problematic based on their own reactions.

It does take some effort to acquire that skill though.

 

[Dufresne]

But I still don't understand how that affects the urine test if the total number of toxins being circulated and pushed out through the kidneys is outrageously high but the VCS results are not as equally bad.

This is my own personal pet peeve with the urine test. No one who advocates for urine testing (like my doc) wants to compare those results with past and current VCS results. Why not? If the urine test results are being used to advocate a specific treatment, then why not utilize VCS history as a way to measure success of that treatment?

I don't know if I fully trust the "science" when it comes to VCS. I've had mixed results using the online tests, passing the one at surviving mold while in a moldy house; failing the free test while in a relatively clean house; but then passing after using binders for some time.

I suspect the parameters when taking the test are very important and I'd be surprised if the 92% sensitivity rate could be replicated using the online format without strictly controlling the variables. As convenient as the online tests are I seriously doubt their reliability.

Is it the toxins swimming around that leads to VCS deficiency or is it stored toxins that are the problem? I think it's supposed to be the latter, but I've often wondered if it's not the neuro inflammation. If VCS abnormalities were the result of neuro-inflammation, the test's reliability would depend on one's inflammatory response which would be subject to a host of factors. And this could also explain the inconsistency I, and many others, have experienced.

Another possibility you might consider is that toxins impacting vision are among the first to go. Even if toxins are dispersed evenly throughout the nervous system, it wouldn't surprise me if their elimination from the different regions didn't follow a priority system.

I too have never had the typical high leptin, overweight presentation. In fact I struggle to maintain body-weight.

 

[out2lunch]

I don't know if I fully trust the "science" when it comes to VCS. I've had mixed results using the online tests, passing the one at surviving mold while in a moldy house; failing the free test while in a relatively clean house; but then passing after using binders for some time.

I've done three different types of online VCS and one paper-based VCS test in my doctor's office. The online test done a few weeks before the office test was almost identical in results. And my doctor's nurse controlled for accuracy of corrected vision (I wear glasses), distance from the cards, and light level in the room, which I also do when taking the test online. All three are requirements per Shoemaker's instructions.

I suspect the parameters when taking the test are very important and I'd be surprised if the 92% sensitivity rate could be replicated using the online format without strictly controlling the variables. As convenient as the online tests are I seriously doubt their reliability.

As long as the environment is being controlled and you don't have any serious problems with floaters, I think the online tests are decent. At least you can get a fairly good idea if you have a toxin problem.

The first VCS test I did was severely positive in my left eye and mildly positive in my right. I had almost no contrast at all in my left eye. But after doing CSM for over a year, the VCS became fully negative in my left eye (18/18) and mostly negative in my right (16/18). And this was during my six month ordeal with a mild case of post-infectious Guillain-Barre.

Is it the toxins swimming around that leads to VCS deficiency or is it stored toxins that are the problem? I think it's supposed to be the latter, but I've often wondered if it's not the neuro inflammation. If VCS abnormalities were the result of neuro-inflammation, the test's reliability would depend on one's inflammatory response which would be subject to a host of factors. And this could also explain the inconsistency I, and many others, have experienced.

I've also wondered about this, but my VCS results during my bout of Guillain-Barre make me doubt this is only about neuro-inflammatory involvement.

The GBS was the worst experience I've ever had regarding inflamed nerves. I had widespread burning peripheral neuropathy from head to toe including my face and scalp, with intermittent episodes of muscle weakness, ataxia, hearing loss, and blurred vision. I took the VCS test on one of my "better days" when my vision was good and was shocked at the results.

Another possibility you might consider is that toxins impacting vision are among the first to go. Even if toxins are dispersed evenly throughout the nervous system, it wouldn't surprise me if their elimination from the different regions didn't follow a priority system.

This seems more likely, but I wish there was a way to check. My VCS turned positive last year after stopping CSM for 8 or 9 months, but has since returned to negative with anti-fungal treatments and daily saunas. I don't know how many different sources of exposure are factoring into this, considering how difficult it is to keep fungus out of my gut for any length of time.

I've been treating my sinuses without any clear indication that I have an infection (sinusitis is allergy based and completely clears up with antihistamines), and I've often wondered if the source of gut fungus stems from mold on food. This seems to be a third rail for many docs (including my own) and I have no idea why. If our bodies are genetically predisposed to improper elimination of mycotoxins, then why can't mold and mycotoxins on our food also make us sick? Just doesn't make any sense.

I too have never had the typical high leptin, overweight presentation. In fact I struggle to maintain body-weight.

This one escapes me. Maybe someone else can explain the leptin connection in Ritchie's biotoxin pathway chart. I just don't get it. Is Ritchie suggesting that more leptin is produced in adipose tissue when the receptors fail to take it up because they're damaged by cytokines? Well, how does that work in someone who's leptin deficient like I am?

Many of us are thin and have never had a leptin problem. But we have low MSH and VIP and ADH from supposedly damaged leptin receptors. But according to Ritchie, our fat cells should be making more leptin to compensate. I don't. I don't even make enough for my BMI. It's really low.

So what if my MSH/VIP/ADH problem is just an inadequate amount of leptin reaching the hypothalamus? What about supplementing leptin to see if the MSH increases? Has Ritchie ever considered doing this with the thin patients? Leptin is now a huge focus for neurodegenerative brain disease research because they see deficient levels of leptin in Alzheimer's and Parkinson's patients and believe there's a connection.

Maybe the skinny ME patients have more in common with Alzheimer's patients than the ME patients with elevated leptin levels. It's still neuro-inflammation but possibly of a different stripe. Just an idea.

 

[ebethc]

And as long as you're on the Ritchie list of biomarkers, the other test I've never been abnormal on, even being borderline overweight (3 pounds over the BMI cutoff for normal weight), is leptin. I'm actually below the normal range for my BMI. And that surprises me, given how many of us have the opposite problem of elevated leptin levels and leptin resistance. I've probably had low leptin secretion my entire life, given how skinny/underweight I was in my youth. Being "overweight" is something that developed when I became hypothyroid several years ago.......

It's not the mycotoxins themselves but how our bodies respond to them by soaking them up like sponges. If you can keep your body from becoming a mycotoxin sponge, then it seems to me that the mycotoxin count becomes less of an issue.

Do either being overweight or having high leptin or both contribute to absorbing mycotoxins?

 

[out2lunch]

Do either being overweight or having high leptin or both contribute to absorbing mycotoxins?

I'm not sure. I think it's more about sustaining an inflammatory state than anything else.

Elevated leptin levels are associated with inflammation, which in turn, is just another nail in the mycotoxin coffin lid. If our bodies are constantly inflamed, we're not going to be efficient at toxin removal. I believe that's the connection. But I could be wrong.