Interpreting HLA-DR test results

[Dufresne]

Thanks @Valentijn for your sleuthing. I didn't bother deciphering the numbers from Wikipedia, as I trust your thoroughness.

Indeed this is disappointing. I checked my copy of Surviving Mold to make sure he wasn't absolutely misrepresenting his findings, because the wording on his site (which you quoted above) is rather jumbled. In the book he clearly states it's 24% of the world's population that is susceptible.

Although there's nothing wrong with his numbers, not openly considering the demographics of his patients when presenting his findings is either sloppy or shady. And from what I've heard of his personality I've little doubt he was allowing people to think this aspect of his work more significant than it is. However he is through and through a scientist with a lot of respect for the process and I do trust his work for the most part.

There are many on the forum and elsewhere who disclose their abnormal (Shoemaker) labs, whether they be C4a, C3a, leptin, MSH, VIP, MMP9, etc. There are also many accounts of people's reactions, both positive and negative, to binding agents such as cholestyramine. So our lab work and our anecdotes do, I believe, add up to something. It's interesting to note, too, that he focused on these markers long before anybody else studying these types of illnesses. And since then leptin has been acknowledged as one of the few abnormalities correlating with fatigue, and this has been replicated. Also C4a is one of the few markers that tends to shift following exertion. It would be a shame to throw the baby out with the bathwater. Recognizing the role of biotoxins in my illness has been a game changer, and I know there are many others with an ME/CFS diagnosis that would say the same thing.

 

[Dufresne]

Dear Gingergrrl,
I think valentijn has made some sensible comments. I think I would go as far as to say that the stuff on this site is complete nonsense. I don't think having this haplotype means anything at all to be honest. We discuss stuff of a wide variation of quality on PR but this looks like complete junk to me.

I value your voice on the forum, sincerely. But I think you should consider your opinion carries a lot of weight and this is going to have an impact. I understand you're merely giving your impression following a quick glance at his website, but I think if you had access to the abnormal labs as well as the experiences of patients, you might conclude there is something to his work and that it needs to be followed up on. In fact I'd say there's more to back up CIRS than anything we discuss on the forum. Shoemaker's labs are some of the few that actually do come back outside the normal range.

It's kind of the flipside of that coin concerning offering medical advice (which most of us are guilty of to some extent). When someone highly esteemed, such as yourself, dismisses a protocol or school of thought they might actually be costing someone years of suffering. My philosophy with regard to this stuff has always been 'buyer beware': let everybody speak their mind, and anybody acting on what they've learned here does so at their own risk. But I try not to shut the door on any avenue a suffering patient might be considering. I'm coming to the conclusion there is something to just about every seemingly odd treatment talked about on this forum, but this is only because I've tried so many of them and know of and trust the accounts of others. As far as I'm concerned this P2P thing we have going has been a whole lot more fruitful for suffering patients than anything offered up by peer-reviewed studies.

Also, if you don't believe mold is relevant in ME/CFS, what do you make of the many complaints of food, chemical, and electrical sensitivities?

 

[Forebearance]

@Forebearance thank you and not surprised I have the bad mold gene.

Do you recommend a mold doctor in Los Angeles or So. CA? I have gotten numerous lists and some lists are so old that the doctors are no longer alive!

Hi @Gingergrrl,
I don't know much about Southern CA, but I will ask around.
So far the closest good mold-aware docs I know are the folks at Gordon Medical Associates up north of San Francisco.

 

[Valentijn]

That is your opinion, I am not up for debating it right now. Will stick with private conversations and clearly everything is "junk" to you but I am fighting for my life right now.

It doesn't mean that people don't have mold issues. It just means that the HLA types are probably completely or mostly unrelated to it, and certainly not confirmatory nor diagnostic of mold issues.

I started looking into it yesterday because my mom got her results: dreaded + mold. There were quite a few sites talking about those HLA types in regards to mold, but they all seemed to be saying exactly the same thing, and it was all going straight back to Shoemaker. And when looking for support for those claims on his site or on google scholar, I hit a dead end.

Hence my interest in finding relevant research, if anyone knows of any

 

[Valentijn]

So our lab work and our anecdotes do, I believe, add up to something. It's interesting to note, too, that he focused on these markers long before anybody else studying these types of illnesses.

Purely in the context of HLA (I haven't looked at the other tests at all), I think it is resulting in a confirmatory bias, or self-selecting bias, or something like that. Basically the only people seeing that doctor or other mold doctors are people who have certain symptoms and are told that those symptoms might mean a bad reaction to mold. They then get tested for HLA, and nearly all of them are positive for "mold genes". That really doesn't confirm anything, at least in the context of HLA, except that American European patients seeing mold doctors have both mold symptoms and the typical American European HLA types.

The other tests certainly might be useful in this context. But it looks like HLA tests are not, at least not in the manner in which Shoemaker is using them. The Visual Acuity test also seems like a complete waste of time, unless it has been properly tested and validated in a controlled environment, and has been compared to other disease with visual issues.

He's probably not wrong about everything, but he's not looking like a reputable source himself. At the very least, I'd thoroughly check into any claims he makes regarding testing and treatment before jumping on board.

 

[Gingergrrl]

The HLA gene doesn't confirm exposure but it confirms you are part of approx 24% of people who cannot detox the mold. The research goes back to Shoemaker b/c I believe he developed this particular test.

I learned this week that the levels of tricothecenes from Stachybotrys in our home (rented) are so high that we are losing all of our belongings and I mean everything and nothing is salvageable. Breathing in black mold for 2+ years has destroyed my health and I am doing all labs needed (most of which are not Shoemakers.)

Whether other people believe in this issue is of little consequence to me right now as I am living it.

 

[Jonathan Edwards]

I value your voice on the forum, sincerely. But I think you should consider your opinion carries a lot of weight and this is going to have an impact. I understand you're merely giving your impression following a quick glance at his website, but I think if you had access to the abnormal labs as well as the experiences of patients, you might conclude there is something to his work and that it needs to be followed up on. In fact I'd say there's more to back up CIRS than anything we discuss on the forum. Shoemaker's labs are some of the few that actually do come back outside the normal range.

It's kind of the flipside of that coin concerning offering medical advice (which most of us are guilty of to some extent). When someone highly esteemed, such as yourself, dismisses a protocol or school of thought they might actually be costing someone years of suffering. My philosophy with regard to this stuff has always been 'buyer beware': let everybody speak their mind, and anybody acting on what they've learned here does so at their own risk. But I try not to shut the door on any avenue a suffering patient might be considering. I'm coming to the conclusion there is something to just about every seemingly odd treatment talked about on this forum, but this is only because I've tried so many of them and know of and trust the accounts of others. As far as I'm concerned this P2P thing we have going has been a whole lot more fruitful for suffering patients than anything offered up by peer-reviewed studies.

Also, if you don't believe mold is relevant in ME/CFS, what do you make of the many complaints of food, chemical, and electrical sensitivities?

Dear Dufresne,
I am not saying mold is irrelevant to ME/CFS. It might be for some.

I was commenting on the website being discussed. For me the reality is that it is not difficult to decide that a piece of written material is totally unreliable on a brief glance if the way sentences are constructed and statements are made are simply not the way someone with reliable evidence would go about things. Having spent forty years listening to people putting across scientific evidence it is not too hard to notice when someone is making unjustified statements. The author of the site disqualifies themself from being taken seriously from the outset. I have no problem with people sharing personal experiences but what I would advise against is treating something as science when it isn't, even if it superficially appears to make use of scientific methodology.

I realise that my opinion may carry weight with some and I consider carefully what I say, but if we do not critique stuff that purports to be scientific we are likely to end up with a lot more harm than if we do. I am not telling anybody not to do anything here. I am simply pointing out that doing something on the basis of the stuff on this site is about as well founded as writing to father Christmas. If there are important things to discover about the role of mold in disease this is not how you do it. It needs some reliable research. Science is about checking that details match up and rejecting things if not. There is no point in doing sort of science. It is self-defeating, apart from the fact that it may bring in money.

 

[waiting]

Dear Dufresne,
I am not saying mold is irrelevant to ME/CFS. It might be for some.

I was commenting on the website being discussed. For me the reality is that it is not difficult to decide that a piece of written material is totally unreliable on a brief glance if the way sentences are constructed and statements are made are simply not the way someone with reliable evidence would go about things. Having spent forty years listening to people putting across scientific evidence it is not too hard to notice when someone is making unjustified statements. The author of the site disqualifies themself from being taken seriously from the outset. I have no problem with people sharing personal experiences but what I would advise against is treating something as science when it isn't, even if it superficially appears to make use of scientific methodology.

I realise that my opinion may carry weight with some and I consider carefully what I say, but if we do not critique stuff that purports to be scientific we are likely to end up with a lot more harm than if we do. I am not telling anybody not to do anything here. I am simply pointing out that doing something on the basis of the stuff on this site is about as well founded as writing to father Christmas. If there are important things to discover about the role of mold in disease this is not how you do it. It needs some reliable research. Science is about checking that details match up and rejecting things if not. There is no point in doing sort of science. It is self-defeating, apart from the fact that it may bring in money.

@Jonathan Edwards,

This question is related to Mold illness testing -- but not HLA test interpretation specifically (which is the topic of this thread, so not sure if it should be moved to a different thread).

I would very much appreciate your opinion on these 2 papers (discussed in other threads on PR) -- the science, methodology, etc.

1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/

2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920250/

 

[Jonathan Edwards]

@Jonathan Edwards,

This question is related to Mold illness testing -- but not HLA test interpretation specifically (which is the topic of this thread, so not sure if it should be moved to a different thread).

I would very much appreciate your opinion on these 2 papers (discussed in other threads on PR) -- the science, methodology, etc.

1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/

2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920250/

I looked at the abstract from the first paper. The second looks like a review based on the first.
The problem immediately apparent is that the negative controls were tested previously. A proper study would give patient and control samples blinded codes and assay them at the same time. That raises an immediate worry.

However, there are times when it is not unreasonable to make a comparison like this if only in a pilot study. So let us ignore that worry and take the data at face value. 104 out of 112 patients with ME/CFS were positive and not a single control was positive. It seems likely that having mycotoxins that were detectable in urine would be the cause of ME rather than the other way around (which would not be interesting anyway). In which case these figures seem to be telling us that having mycotoxins that are detectable in urine ALWAYS causes ME, because otherwise there would be some people without ME in the controls with mycotoxins found. Unless of course none of the controls lived in damp places but the ME patients did. In that case the results just tell us that people with ME live in damp places - pretty much all of them do and no normal people do.

What I am getting at is that in real life science you do not normally get a black and white picture like this, and if you do you have to think quite hard what it could possibly mean. I am not sure I can see a way that results would make sense. Surely there are lots of healthy people living in damp places and lots of PWME who do not live in damp places? If we want to know if PWME live in damp places then it may be easier to look at their houses rather than test them for mycotoxins. Maybe this team specifically collects patients who live in damp places - in which case it is maybe not surprising that they have mycotoxins. But that does not tell us about a cause of ME.

Which rather brings us back to worrying about the fact that the controls were not measured alongside the patients. I am afraid I have not read the whole article but I am doubtful it will make things different.

 

[Valentijn]

The problem immediately apparent is that the negative controls were tested previously. A proper study would give patient and control samples blinded codes and assay them at the same time. That raises an immediate worry.

I looked at the paper where those controls were initially used, and they were selected precisely because they were negative. If I'm understanding that paper ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680627/ ) they needed the known negative controls to verify the accuracy of a testing method.

Using them as controls to determine mold prevalence rates in patients versus the general population seems grossly inappropriate.

 

[Jonathan Edwards]

I looked at the paper where those controls were initially used, and they were selected precisely because they were negative. If I'm understanding that paper ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680627/ ) they needed the known negative controls to verify the accuracy of a testing method.

Using them as controls to determine mold prevalence rates in patients versus the general population seems grossly inappropriate.

There seems to be something embarrassingly circular here.

 

[waiting]

Thank you for your clear analysis of the papers, @Jonathan Edwards! It's good to have your perspective on the science,

They originated from a doctor's findings (Dr. Brewer) that his patients were improving their health after treatment with anti-fungals (discussed in a Mycotoxin thread here on PR).

And these patients (long term ME patients) were all testing positive for mycotoxins, using RTL's urine test.

As with several other theories as to the cause or at least contribution to illness, it feels like there is something to this for a subset of patients, even if the papers don't pass scientific muster.

There are so many people who have regained function (to varying degrees) after avoiding mold & others through both avoidance and anti-fungal treatment.

I hope they -- or someone -- continues to publish in this area to elucidate the connection between mold exposure and ME/SEID.

 

[Sea]

The HLA gene doesn't confirm exposure but it confirms you are part of approx 24% of people who cannot detox the mold. The research goes back to Shoemaker b/c I believe he developed this particular test.

You may well be unable to detox mold toxins but linking that to your HLA haplotype doesn't yet have the necessary rigorous scientific study required. This test only confirms you can't detox mold if the information is accurate. That is what is being questioned - the accuracy of Shoemaker's claims. Having a mold related illness and carrying Shoemaker's specified haplotype does not provide the necessary proof without adequate scientific study. That no studies can be found, only articles written by Shoemaker does not bode well for reliable evidence.

I learned this week that the levels of tricothecenes from Stachybotrys in our home (rented) are so high that we are losing all of our belongings and I mean everything and nothing is salvageable. Breathing in black mold for 2+ years has destroyed my health and I am doing all labs needed (most of which are not Shoemakers.)

Whether other people believe in this issue is of little consequence to me right now as I am living it.

I'm sorry to hear you are losing all your things. Another loss to grieve on top of all the other illness related losses. I think you are mixing up people's views on Shoemaker's information with their views on mold illness. No one here is saying mold illness is not serious or that you don't have it. I hope that having found that mold is a significant part of your illness that you can find reliable treatment and enjoy a return of good health.

 

[Forebearance]

Say @Gingergrrl , you might not have to get rid of all your posessions.
If you can afford it, you can put them in a storage unit.
Erik J. did notice that his possessions denatured gradually over the course of five years they spent in a desert-y non-climate controlled storage unit in Nevada. I would guess he had them sitting out, not packed up tightly.

I felt like I wanted to save some precious things, so I put them in a storage unit. I used a climate controlled one, and I packed them up because I was worried about bugs getting into them. But someday I can hopefully let them sit out in a hot dry place and start letting the toxins wear off (denature).

The goal is to get yourself away from the possessions so they won't make you sick.
But things could change in the future. Your health could improve. Your stuff could denature. Your healthy realitves might be interested in inheriting some of it. Someone could invent a way to get mold toxins to "let go" of objects.

So I'm just suggesting.... don't throw away anything you might regret getting rid of.

 

[Gingergrrl]

@Forebearance we are going through this process now and it is painstaking and arduous b/c doing it via phone and Face Time since I cannot return to our home b/c of the toxic levels of tricothecenes from Stachybotrys.

We have two days to finish it and we will be saving some stuff in storage but it is heartbreaking to lose most of our stuff especially for my dtr who is in shock. We thought we could clean and save a lot but top prof mold co said it was too dangerous and one of the highest levels of mycotoxins they had ever tested on all of our household goods.

 

[Forebearance]

I'm so sorry for your daughter and the stress you guys are going through, @Gingergrrl.
I understand how hard it is to do that sorting process, especially when you are really sick.
I ended up getting rid of about half of my possessions, and was lucky enough to be able to put the other half in storage.

I'm so sorry to hear about how high the levels of mold toxins were in your home! That sounds really scary.
I hope getting away from your possessions will pay off in improved health for you.

So far I haven't heard of any good CFS/mold docs in LA, which is kind of surprising.

 

[Gingergrrl]

There is nothing here and no mold doctors in LA. Closest in SB but so far she is not returning our calls. We cannot find an atty to take out case and spoken to multiple people. We have to be out by tomorrow and still going through everything by phone and Skype. You would think a city like LA would have lots of specialist in all of these areas but there is nothing here. I think they've been driven out or given up.

 

[Lisette]

Gingergrrl

I am so sorry you are going through this. The same thing happened to me back in 2008, and I had two elementary aged children at home at the time. They are grown now, and both are in college, so hey, we all made it through!!

I understand exactly what you are dealing with.

Your remediation company and Dr. Shoemakers's first step-- remove yourself from exposure-- are in accord, so it really doesn't matter what anyone thinks about how this relates to CFS. You have a Herculean task to do while being really sick, and what you mostly need is support and help.

If this is of any use, in 2007, Rich Van K was the person who first alerted me to Dr. Shoemaker's visual contrast test for neurotoxins. I don't think Shoemaker had a fully formed website, then. I thought very highly of Rich for not insisting that I should continue to play around with his protocol, but to look into neurotoxins, instead. I wasn't sure what I thought of the VCS test at that time, or any of the other tests. But it turned out not to matter, because I had to do what was at hand.

Just this past year, I had my blood work done (eight years later). I also have the 11 3 52 haplotype, two hetero MTHFR SNPs, and several other biomarkers that are abnormal. The doctor who ordered these tests has her premed undergrad from Harvard and her residency from Johns Hopkins. She has treated patients with all sorts of autoimmune illnesses for years. She is not a CFS specialist nor a mold doctor.

I have never seen Shoemaker myself.

Perhaps you could look for a Functional Medicine doctor in your area. That might be a start? There is a search by area on their website: https://www.functionalmedicine.org

In my experience, they are willing to order tests without being strictly a CFS, Lyme or Mold specialist, since you are having trouble finding one of those in your area.

Lisette

 

[Gingergrrl]

Thank you Lisette and will try to respond more later.

ETA: @Lisette I looked at link for functional med drs but couldn't find anyone who does mold. There is only one person about two hrs north of me and still banking that she will call us back. If not, am really not sure who to call.

 

[Gingergrrl]

I'm so sorry for your daughter and the stress you guys are going through, @Gingergrrl.
I understand how hard it is to do that sorting process, especially when you are really sick.
I ended up getting rid of about half of my possessions, and was lucky enough to be able to put the other half in storage.

I'm so sorry to hear about how high the levels of mold toxins were in your home! That sounds really scary.
I hope getting away from your possessions will pay off in improved health for you.

So far I haven't heard of any good CFS/mold docs in LA, which is kind of surprising.

@Forebearance thank you for all your support and the lack of services that I expected to be available in LA (b/c we are such a large & diverse city) has been really surprising to me. It seems like the experts are all in No. CA (at least three solid mold specialists up there) as well as OMI and Stanford and lots of resources. Otherwise the experts are in smaller towns or on the east coast. I've done so much research and there is really nothing here unless you have a traditionally understood illness.