Questions re: mold testing, labs, treatment

[Gingergrrl]

I have a few questions after finding ongoing mold in my home for the third time and praying I am now posting this correctly in the biotoxin section and more people will see it.

1) is Real Time Labs the most accurate testing? Is it ever covered by insurance?

2) what is the medical treatment for mold if you test positive (in addition to ensuring it is removed from home.)

Thank you in advance to anyone who responds!

 

[Forebearance]

Hi @Gingergrrl !

1) Using the Real Time Labs test is part of Dr. Brewer's idea. He thinks that people with CFS who have lived in buildings with a mold issue may have picked up some fungal critters that live in the sinuses and become an internal source of mold toxins.

So he does this test to see if people with CFS are excreting mycotoxins in their urine.The jury is still out on whether it is the most accurate test or not. I believe that it is covered by some insurance policies.

There is also Dr. Shoemaker and his idea. He thinks that people with CFS who have lived in buildings with a mold issue may have collected mold toxins in their bodies in places like fat cells, and are having trouble getting them out. He does a genetic test to find out if a person has one of the inherent susceptibilities to various kinds of biological neurotoxins. Mycotoxins are one kind of biological neurotoxin. If you're susceptible, you have trouble detoxing the toxins.

Then he does a panel of lab tests that check for markers of the inflammatory cascade that happens in a person's body if they are walking around with a lot of stored mold toxins in them.

You can get either doctor's lab tests done by any doctor who is willing to order them for you. Just be sure you get the correct tests done by the correct laboratories. Dr. Shoemaker has a whole list of lab tests on his website: http://www.survivingmold.com

So I guess it comes down to which doctor's theory grabs you the most. Both of them could be correct. There are quite a few CFS specialists by now who understand Dr. Shoemaker's concept of mold poisoning and all the various treatments for it. There are more CFS specialists all the time who have heard of Dr. Brewer's theory and protocol.

2) Dr. Brewer's protocol is detailed in his two published articles. Dr. Shoemaker's treatment is detailed in his books "Mold Warriors" and "Surviving Mold" and on his websites.

Of the two, Dr. Brewer's is simpler. I've been having good results from it.
But I'm not discounting Dr. Shoemaker's treatment protocol, either. Parts of it have helped me.
Maybe other people will weigh in with their opinions.

Your poor house! And poor you! I can't believe it's had mold show up for the thrid time.
Both doctors ask their patients to get the mold remediated properly before beginning their protocols. Or else the patient could move to a house that doesn't have a significant mold problem. Somehow you just have to get to a better environment before starting all the treatments.

I wish you all the best with this challenge!
Forebearance

 

[Ema]

My LLMD was telling me at my last visit that a new lab is now doing the same test as Real Time Labs for about half the price. I can try to find out more information if you're interested.

For me, once I found out I had the mold HLA type through regular, insurance covered Labcorp testing, I wasn't all that interested in the urine mold test and just moved on to starting treatment, mostly following the Shoemaker protocol of cholestyramine and treating nasal MARCoNS with BEG antibiotic spray. If that doesn't work, then I will reconsider the Brewer urine testing.

 

[Gingergrrl]

@Ema Yes would love to know the name of alternate lab and also the name of the Lab Corp test.

@Forebearance thank you for all the great info. My neck pain is off the charts or I would be asking you both a lot more questions if I could type!

 

[Forebearance]

Hi again @Gingergrrl ,

If you want to get the genetic test that Dr. Shoemaker does, you ask your doctor for this:
(This is from the lab order sheet on survivngmold.com)

HLA DR by PCR
Lab Corp
Spec: Lavender, room temp
Code #: 167120
DX Codes: 279.10, 377.34, 279.8
CPT Code: 81375

Whoever orders the lab tests should be able to use this info to get you the correct test.
Or some doctors have you go to your nearest Lab Corp office to get the blood drawn.

I hope that helps!
Fore

 

[Gingergrrl]

@Forebearance Thank you! I just wanted to clarify, does this genetic test show if a person was exposed to mold (meaning a specific type of mold is testing positive in their blood, nasal swab or urine) or is it purely showing a genetic predisposition?

I am guessing at this point that I have every bad genetic predisposition that exists from the dawn of time. Would the other tests (Brewer and RTL) be more useful to know if I actually am testing positive for mold especially if I will be giving this into to an attorney? I want it for legal purposes and for future treatment (vs. just knowing the genetics.)

If you can explain that would be awesome. I am greatly at a disadvantage not being at home with my regular computer and the one I am using now is slower than the dark ages. My arm is too weak to type more than a few words on phone but have the opportunity to use computer briefly right now.

Thanks again for helping me with all this.

 

[Sushi]

I just wanted to clarify, does this genetic test show if a person was exposed to mold (meaning a specific type of mold is testing positive in their blood, nasal swab or urine) or is it purely showing a genetic predisposition?

I'm not Forebearance but not sure if she will see this before you need the info. As I understand it, this genetic test just shows predisposition, not exposure.

Would the other tests (Brewer and RTL) be more useful to know if I actually am testing positive for mold especially if I will be giving this into to an attorney? I want it for legal purposes and for future treatment (vs. just knowing the genetics.)

I believe these tests would show exposure but whether they would be regarded as conclusive for legal purposes, I don't know. Maybe others do?

Sushi

 

[Ema]

I'm not Forebearance but not sure if she will see this before you need the info. As I understand it, this genetic test just shows predisposition, not exposure.

I believe these tests would show exposure but whether they would be regarded as conclusive for legal purposes, I don't know. Maybe others do?

Sushi

@Sushi is right, the HLA tests just show whether or not you have a genetic predisposition to be unable to detox mold properly. If you have these genotypes, it's more likely you are not processing the mold toxins out properly and then they can recirculate and distribute and cause problems that those without susceptible genotypes do not so often face. They can't tell you if you've been exposed though. But then again, most of us have been exposed and not everyone gets sick which is another problem from a legal perspective.

The urine mycotoxin tests are more commonly used for legal purposes but they are not a slam dunk either. Many healthy people will show some levels of mycotoxins on these tests. And then you have to somehow tie the exposure to your home...possibly showing the same strains? I don't know if that is even possible. But there's enough controversy over all mold testing to make a legal win a challenging task. Which isn't to say don't do it but just to have your eyes open that it will probably cost more in legal fees to fight it than moving unfortunately.

 

[Forebearance]

I wonder if you could correlate a urine mycotoxin test from RTL with a mold identification test from your home.

I used this company: http://www.mould-works.com to analyze a fiber sample of the stain on my living room carpet, and they sent back a report listing the exact kinds of mold in the sample. It wasn't too expensive.

Then I waited until I had moved out, and gave my landlord a copy of the test results. I didn't want him to come in to my apartment and start messing with the moldy spot and spread the toxins around even more.

@Ema, does your dog do lab tests? ;-)

 

[Dreambirdie]

Hi again @Gingergrrl ,

If you want to get the genetic test that Dr. Shoemaker does, you ask your doctor for this:
(This is from the lab order sheet on survivngmold.com)

HLA DR by PCR
Lab Corp
Spec: Lavender, room temp
Code #: 167120
DX Codes: 279.10, 377.34, 279.8
CPT Code: 81375

Whoever orders the lab tests should be able to use this info to get you the correct test.
Or some doctors have you go to your nearest Lab Corp office to get the blood drawn.

I hope that helps!
Fore

How much does this test cost?

 

[Ema]

How much does this test cost?

It's typically covered by insurance but I found it at econolabs.com for $499. I'm not sure if that is the cheapest source though and there tends to be a lot of variability in the online sources.

 

[Ema]

@Ema, does your dog do lab tests? ;-)

I wish! Make the lazy spoiled puppies earn their keep!

 

[oceiv]

Questions about testing a person for mycotoxins (I hope it's alright to add them here):

1) Does a blood test for mycotoxins reveal anything useful?
2) If a person's body doesn't clear molds, then would a urine or blood test reveal if a person had mold-exposure in the past or just if a person is currently reacting to present environmental mold?
3) Would the urine test be the best one if a person suspects that present sinus issues may be caused by mold(s)?
4) Are there any home kits that reliably test your home or must you hire a professional?

My LLMD was telling me at my last visit that a new lab is now doing the same test as Real Time Labs for about half the price. I can try to find out more information if you're interested.

Is the econolabs.com the new, cheaper lab? If not, I'd be interested in the new lab test.


My residence had a lot of previous water-damage and mold (regular, not black mold).

 

[Gingergrrl]

I wonder if you could correlate a urine mycotoxin test from RTL with a mold identification test from your home.

@Forebearance this is what I am going to attempt to do. We will find out from the air and wall testing what molds are there and then try to test me for the same species. Not sure if species is the right word?!

 

[Forebearance]

How much does this test cost?

Hi @Dreambirdie,
When I had this test done, it got run through my BC/BS and ended up costing me around $100. I have a high deductible so I end up paying for everything myself, but the rate gets lowered to what the insurance company says it should cost.
This was years ago, though.

 

[Forebearance]

Questions about testing a person for mycotoxins (I hope it's alright to add them here):

1) Does a blood test for mycotoxins reveal anything useful?
2) If a person's body doesn't clear molds, then would a urine or blood test reveal if a person had mold-exposure in the past or just if a person is currently reacting to present environmental mold?
3) Would the urine test be the best one if a person suspects that present sinus issues may be caused by mold(s)?
4) Are there any home kits that reliably test your home or must you hire a professional?.

Hi oceiv,

1) I don't know. I haven't ever heard of one being used by anybody.
2) I believe a urine test shows if your body is currently detoxing any mold toxins. So I'm not sure how you would infer what the source of those mold toxins is.
3) Yes, I think so, because that is what Dr. Brewer has been using.
4) You could check Dr. Shoemaker's web site. The last I heard, he was recommending the ERMI test as the best whole home test. It comes in a kit and you do it yourself and send it in.

Does anybody else know the answers to these questions?

 

[Forebearance]

@Forebearance this is what I am going to attempt to do. We will find out from the air and wall testing what molds are there and then try to test me for the same species. Not sure if species is the right word?!

Best wishes with this, @Gingergrrl .
I think species might be the right word!

 

[oceiv]

Thank you for those answers, @Forebearance .

If anyone else has more to add I'd be glad to hear it. I'm so new to the potential mold aspect of this disease, even though I was diagnosed with a mold allergy even before I got sick. I wonder if people with mold allergies usually have those HLA variations?

I looked on the Shoemaker site and although it's not specifically recommended, the only link to an ERMI testing company is: http://www.survivingmold.com/diagnosis/ermi-testing/mycometrics-llc
Their site: http://www.mycometrics.com/
No prices listed. I have no idea if the company's costs are prohibitive. Has anyone used this company?

His site lists a ton of labs, but it sounds like if I were to be able to get that urine test (Brewer recommends), it would be the best first step. Especially if looking for causes of sinus problems. If I'm understanding everything above correctly.

 

[MCRobbie]

My LLMD was telling me at my last visit that a new lab is now doing the same test as Real Time Labs for about half the price. I can try to find out more information if you're interested.

I would also be interested to know the name of this lab @Ema if you know of it.

 

[Forebearance]

I wonder if people with mold allergies usually have those HLA variations?

I looked on the Shoemaker site and although it's not specifically recommended, the only link to an ERMI testing company is: http://www.survivingmold.com/diagnosis/ermi-testing/mycometrics-llc
Their site: http://www.mycometrics.com/
No prices listed. I have no idea if the company's costs are prohibitive. Has anyone used this company?

I did use that company years ago. I can't remember the exact cost, but I think it was a few hundred dollars, and I have heard that the price of the ERMI has gotten cheaper since then.

As I understand it, mold allergies are a separate issue from mold poisoning. So as far as I know, they aren't related to your HLA haplotypes. I've known people with mold poisoning who had mold allergies, and people who didn't. Similar to the general population. Again, anyone else feel free to jump in on this.