Mycotoxin-Is this a worthwhile pursuit?

Prefect

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Been sick for 5 years with non-specific neuro symptoms. No body fatigue or PEM. All my symptoms are in my brain.

A doctor recently wants me to take the Mycotox Urine test. He wants me to take Fluconazole and Cholestyramine for a few days before my test to ensure any "mold trapped in my cells gets out to show up in the test".

This is quite an expensive test. I told him I live on the second floor of a concrete apartment building with radiator heat, so I don't see how I'd be exposed to mold. He said the mold cold be from my body from before. (?!)

The only reason I'm humouring this doctor's theory is my right maxillary sinus is completely opacified (meaning it's completely full with something, though I have no sinus symptoms, it was discovered during a CT scan) and it could possibly be mold??? And I got sick after using a nasal steroid spray (for nighttime nasal stuffiness), so if it is mold maybe it got worse due to the steroid (could be a coincidence)?

Is this a worthwhile pursuit?
 

Hip

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Dr Joseph Brewer published a theory positing that ME/CFS may involve a chronic mold infection in the sinuses. He has tried to treat ME/CFS using antifungal nasal sprays.


You can use a free online visual contrast sensitivity test (VCS) to help diagnose mold illness. This visual test utilizes your eye's ability to detect shades of contrast as a means to gauge exposure to mold toxins.
 

Judee

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Have you been able to eliminate any foods and chemicals that you suspect cause your sinus issues first? I used to have a plugged nose all the time but over the years eliminated anything that caused problems.

Yes, it means my diet is very limited but now my nose is clear most of the time. Plus, although I tested positive to pollens they don't bother me like other people who eat any and everything around me and I never use antihistamines unless I'm trying them for a different treatment like possible Lyme co-infections.

One allergist said everything is cumulative.

Anyway, just trying to save you some money. Those tests can be so expensive.

A favorite veterinarian of ours always used to say, we can test or we can treat as though we tested and if the problem resolves then we were probably correct in our assessment. He saved us a lot of money through the years with our pets this way.

Of course, that doesn't work for everything but maybe in this case it would.
 

Wishful

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A doctor recently wants me to take the Mycotox Urine test. ... This is quite an expensive test.
Sounds like a conflict of interest to me, especially if he's pushing hard for it despite you giving explanations for why you think mold is unlikely the cause. Asking here for opinions seems wise.

And I got sick after using a nasal steroid spray (for nighttime nasal stuffiness), so if it is mold maybe it got worse due to the steroid (could be a coincidence)?
If it the spray was mold-specific, it would be strong evidence. However, steroids do all sorts of things, most of which are unrelated to molds and the body's responses to them, and aren't limited to where they're sprayed, so I think it doesn't provide much useful information.
 

Prefect

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Dr Joseph Brewer published a theory positing that ME/CFS may involve a chronic mold infection in the sinuses. He has tried to treat ME/CFS using antifungal nasal sprays.


You can use a free online visual contrast sensitivity test (VCS) to help diagnose mold illness. This visual test utilizes your eye's ability to detect shades of contrast as a means to gauge exposure to mold toxins.
@Hip thanks for this link, I just tried it. I scored 94%, and it said I do not suffer from a health condition that affects my visual system.

This shocks me, because a lot of my symptoms revolve around my eyes. My vision is jumpy, I spend a lot of time trying to hold my eyes in abnormal positions to help me concentrate and focus on objects, I've been told by neuro ophthalmologist my eyeballs have a tremor. Not eyelids, my actual eyeballs. When I walk I constantly feel like there's an earthquake or the ground is slanted. A lot of my brain's energy seems to be spent trying to negotiate my position in space, even when I'm sitting. I have to lie down and keep my head still on a pillow to be able to concentrate on reading.
 

vision blue

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The OAT test could be an alternative. It is very sensitive to any mold in body. (By tesring the metabolites produced by molds). Medicare covers it but most insurances do not. Provoked tests like the one hes suggesting a controversial

To avoid conflict of interest on any of these, if the doctor orders it, make sure on the requisition form (which you will see) that the billing option of Charge to Physician is NOT checked off, but rather Payment enclosed or bill to insurance (if your insurqnce covers it). Most alternative test labs will tell you if you phone or emeil what the cost woukd be if bill directly to patient (with “prompt payment” which is often cheaper). You can then compare it to what doctor says it wil cost . If the latter is even a penny more then he’s a crook because providers get them at a much cheaper rate so if doc is really honest he would pass on 100 percent of the savings to you, which can be 25 percent less (varies).

If you touch your face over the maxillary sinus, is it tender?
 
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Prefect

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@vision blue what is the OAT test?

No my maxillary sinus is not tender. I have no sinus symptoms, no pain, no pressure, nothing. That's why I was shocked by this CT scan.

I have nasal stuffiness (no discharge) when I lie down, I wear breathright strips to sleep.
 

vision blue

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The OAT stands for Organic Acid Test
https://www.greatplainslaboratory.com/organic-acids-test/

The first set of markers is for yeast and fungal overgrowth. here is a sample report
https://static1.squarespace.com/sta...be03234e569cf/1581440545641/Sample-OAT-EN.pdf

i suppose one could argue that depending on where mold overgroth is, it may not show up here- but those same arguments apply to mycotoxin test.

There's alot of free webinars concerning how to interpret the markers.

Which lab does he want the mycotoxin test from? Great Plains also has one. https://www.greatplainslaboratory.com/gplmycotox It is not covered by medicare (unlike the oat) To give you an idea of price, the cost direct to patient (a year ago anyway) is $300 and the cost for a physician is $250. so if he's using great plains, and he's super honest and caring for his patients he would charge you $250, if he's not greedy but can't handle the hassle of billing through him, then he should check off "cash pay" by patient, and you'd pay great plains 300 directly to great plains. If he does anything other than these, then he has a financial conflict of interest in ordering the test. As i mentioned, running the test provoked is contraversial; many say the results are not standardized agaisnt provoking agents and by doing that you are stacking the deck to get a positive result, whether there is a problem there or not.

what did the radiology report say about it other than opaque?

Why have you thought you needed breath right strips to sleep? i.e. what have you attributed the nasal stuffineess to? (by the way, i had years of chronic sinusitis and there was zero discharge- and stupid docs took one look up my nose, saw no evidence of discharge and simply discounted the chronic sinusitis) did that all start when your cfs symptoms did? i don't suppose you have any old scans you can check to see if your maxilary sinus has always been like that? or since when? i'm trying to rmemeber if a nebulizer has a small enough particle size if it can get into that space. (as you know there are other causes of chronic sinusitis- if its even that at all; and also worth finding out if you are allergic to mold because then even very small amounts can cause inflammatory etc reactions.
 

Prefect

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@vision blue so a bit of background. 25 years ago fell ill, liver enzymes shot through the roof, tested negative for all hep viruses. Around the same time I had some dental work done. I stayed sick with the same neuro symptoms I specified on this thread for about a year. Got diagnosed CFS by an internist. Recovered after about a year and realized I likely never had CFS because I did't have PEM, my body wasn't tired, just neuro symptoms.

Even though I recovered I still had some lingering symptoms. Nasal stuffiness was one of them, in addition to occasional balance problems, anxiety, and IBS (occasionally). Next 20 years I thrived, even more than I had before I got sick.

5 years ago I relapsed, much more severe than 25 years ago, same neuro symptoms specified on this thread. Again, no body fatigue, no PEM. I have not recovered, in fact getting progressively worse. Had first CT scan 2 years ago, which showed complete opacification of right maxillary sinus. The other thing that showed was small quantity of material at the floor of the sinus which appears to have the same consistency as filling material in the dental root canal right underneath this sinus. It appears the root canal was overfilled and some filling material made it into the sinus cavity. This root canal was done 25 years ago around the same time I got sick the first time. I've been researching this and it appears some root canal filling materials such as Zinc Oxide can cause proliferation of fungus if the filling contaminates the sinus.

My issue is I must have had this on my sinus for 25 years. Why relapse 5 years ago? There are two things that preceded my relapse: 1. Severe sleep deprivation due to my young child. 2. I used a nasal steroid spray to help with my nasal stuffiness. Perhaps the steroid suppressed local immunity in my sinus and caused the theoretical fungus to grow more? I don't know. I'd used this spray a few times before and it had never caused a relapse.

The test is Great Plains Mytotox Kit. I live in Canada. Doctor told me it'll cost around $650 Canadian. He's also proscribed me Fluconazole 100mg twice a week and a nasal anti fungal spray. I guess I could take the meds and see if they help without taking the test. But my understanding is if someone actually has a sinus full of fungus they need to have it removed surgically in addition to anti fungals.

I don't know.
 

vision blue

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Ok i sent you the message- its long.... In terms of public comments for this thread, i will check on price of the whole kit which i guess includes the provocation meds. If yku have the test kit already, theres a requisition form- what box did he check off for billing?

last Question- you said one of your tests coukd be mold but coukd be something ekse- i didnt recognize the a ronym- what was the test that was abnormal?
 

vision blue

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I just checked and its the same kit. MycoTOX (mycotoxins profile ) kitfrom the same place. As I said, cost is 250 US dollars to physician abd 300 us dollard if pay company direct. 300 us dollars 361.62 canadian dollars , so it soibds like he is trying to pocket the difference between what he pays (us 250) and what he wants to charge you (650!canadian) unless the price includes other things besides the kit he disnt tell you about. I dont think the lab chargeS that kibd of premium for canadian customers. Great plains alson includes a free 30 minute consult with ykur test results.
 

Booble

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Curious about your doctor. What kind of doctor and what is his or her specialty?

As for mold in your sinus, my guess is that you would be feeling a lot of additional sinus symptoms.

If your doctor is not ENT (ear, nose throat), I would start there and have them identify more clearly what is showing as the opacity.
 

Prefect

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@Booble this guy's a Toronto internal medicine specialist gone integrative. So he charges privately even though doctors are covered in Canada because his work is out of the box. He's been on the news here in Canada for his treatment of Lyme patients with Disulfiram.
 

Booble

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@Booble this guy's a Toronto internal medicine specialist gone integrative. So he charges privately even though doctors are covered in Canada because his work is out of the box. He's been on the news here in Canada for his treatment of Lyme patients with Disulfiram.
He sounds like a great option. I'd still go to an ENT first though about the unknown crud in your sinus. I'm surprised he hasn't referred you. An ENT should be able to diagnose that pretty easily.
 

out2lunch

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Been sick for 5 years with non-specific neuro symptoms. No body fatigue or PEM. All my symptoms are in my brain.

A doctor recently wants me to take the Mycotox Urine test. He wants me to take Fluconazole and Cholestyramine for a few days before my test to ensure any "mold trapped in my cells gets out to show up in the test".

Is this a worthwhile pursuit?
Yes. Do the test. I did, and I was swimming in mycotoxins, especially ochratoxin a and some trichothecene from black mold.

I did cholestyramine once a day before dinner for two years. It dialed down my symptoms considerably, including my severe chemical sensitivity. It definitely improved my health.

Judi