HLA Test Results

[mama2alex]

I just got Alex's HLA testing back. We did it through my doctor because he says I have mold illness and we wanted to see what was going on with Alex. Can anyone tell me what these mean? I'll talk to the doctor in a few days, but wanted to get input here first.

 

Here are the results:

DRB1 - 04:01, 08:01

HLA DQ - 03:JZME, 04:MJYR

DRB4 - 01:FVUU

 

I looked at Shoemaker's chart on his website, and am thinking this means Alex is susceptible to mold AND Lyme, but I'm not sure. My test showed I'm only susceptible to mold.

 

Any thoughts would be much appreciated!

[smartyjones]

sorry mama -- i have no answers for you, just a question.

 

my sister is being treated for lyme etc with abx. her doc ran this test and said she had some of the worst results she's seen. (i believe my sister had pandas as a kid - just not to the level most of our kids experience today). i am frustrated b/c the doc just tells her all the things she needs to avoid b/c she is supersensitive -- which she knew in the first place from experience - and can't seem to be able to tell her anything to DO about it. please let me know anything you find out about what to DO with results from this test. thanks and good luck finding info.

[mama2alex]

Smarty, Do you know if she tested as "sensitive" to both Lyme and mold? My understanding is that would be the worst case scenario with this test, though I definitely don't have my arms around it yet. My test shows I can't really detox mold, but can detox Lyme. I am sensitive to many things as well - antibiotics, sulfa drugs, gluten, dairy, sugar, alcohol, and skin is very sensitivite so I use soap/laundry detergent without perfumes/dyes.

 

Here's a good video I watched recently which would help you/her understand a lot more about this: http://mendocoasttv.org/mcdhWellnesslecturemoldtoxicitydrnathan1.html

 

Our doctor says we need to address the mold problem in our home - or move out - before I can recover from this. He is going to treat me with Cholestyramine, which Dr. Nathan talks about in detail in the video. It has to be done in a very particular way, so you really need to be under the care of someone who understands this - it doesn't sound like your sister's doctor is. He is also going to have me take a number of supplements, most of which I've already started, to help heal the damage caused by the mold toxicity. These include DHEA, phosphatydil choline, liver support, transdermal glutathione, B vitamins, multi-mineral (b/c Cholestyramine can deplete), fish oil and a few others.

 

To diagnose me, my doctor did much more than this test. He tested things like C4A, VEGF, MSH, cortisol, ACTH, MMP-9 and did the VCS eye test (something else Dr. Nathan discusses in the video). You can read about these things on Dr. Ritchie Shoemaker's website: http://www.survivingmold.com/diagnosis/lab-tests

 

I know there are a few moms on this forum who've dealt extensively with mold toxicity, so hopefully they will chime in and help us!

[SSS]

Dd7 and I both have one of the 'dreaded' genes- my understanding, and this is all from the King of mold, Dr. Shoemaker,

that with one or two of the 'dreaded' combo type genes,

you MAY have trouble detoxing mold and Lyme disease- doesn't mean you have either, per say--

We went through the mold detox protocol, home inspections, etc.

During Lyme treatment, I try (and think I do a pretty good job) of relying heavy on various detox methods---

 

P.S.

If you google 'shoemaker Rosetta stone'

it should pull up the key to figure out your son's test results.

[Familyof5]

sorry mama -- i have no answers for you, just a question.

 

my sister is being treated for lyme etc with abx. her doc ran this test and said she had some of the worst results she's seen. (i believe my sister had pandas as a kid - just not to the level most of our kids experience today). i am frustrated b/c the doc just tells her all the things she needs to avoid b/c she is supersensitive -- which she knew in the first place from experience - and can't seem to be able to tell her anything to DO about it. please let me know anything you find out about what to DO with results from this test. thanks and good luck finding info.

 

my family and i all have one variation or another of the dreaded gene type. the odds of my husband and i both having dreaded gene giving my kids a 100 percent chance of having dreaded gene, plus actually being lucky enough to live in a moldy home for 10 years makes us quite an interesting case study for mold illness. i will tell you that you can recover, but it is not easy. avoidance as your sister's doc is advising is really the first step to truly recovering. we tried to stay in moldy home, but for us, cleaning the mold up proved impossible. so much of it is hidden that you dont believe it can still be there but it is. steps we took:

moved out

brought only belongings that could be cleaned

do ermi testing to be sure mold levels are below a 1 ( very difficult to find)

detoxed regularly for years with cholesyramine

supplement with vitamins to repair myelin sheath damage

avoid mold at all costs

see dr. shoemaker---definately worth the trip and expense--read his books, educate yourself about his protocal

avoid gluten, dairy, corn

take all the proper steps in protocal to then be able to take shoemaker rx of vasoactve intestinal peptide...a miracle drug for me...i believe it repaired autoimmune damage

it was a long road for us. i dont believe my family would be in the great place we are now if we hadnt moved out of moldy home.

[mama2alex]

Thanks! I did find a document called "Instructions for using the Rosetta Stone for HLA DR by PCR" via Google that I think explained how to interpret the table on Shoemaker's web site. The table wasn't labeled "Rosetta Stone," but seemed to be a key to the test results. If I got it right, Alex is susceptible to both Lyme and mold. Don't know if this is the so-called "dreaded" combination, but am talking to the doctor on Monday, so I'll find out.

 

Dd7 and I both have one of the 'dreaded' genes- my understanding, and this is all from the King of mold, Dr. Shoemaker,

that with one or two of the 'dreaded' combo type genes,

you MAY have trouble detoxing mold and Lyme disease- doesn't mean you have either, per say--

We went through the mold detox protocol, home inspections, etc.

During Lyme treatment, I try (and think I do a pretty good job) of relying heavy on various detox methods---

 

P.S.

If you google 'shoemaker Rosetta stone'

it should pull up the key to figure out your son's test results.

[JuliaFaith]

We have also gone down this path before. My son has the 15-6-51 combo which means that he would not recover from lyme on abx use alone. He seems to be doing well keeping the lyme away after a few years of natureopathic; homeopathic; and allopathic (some abx) treatment. His biggest problem now are viruses.

 

We have also done a few ERMI's on our home and have remediated as much as we can. Surprisingly, the last remediation was the attic. After remodeling entire house, it was the only thing we had not thought about. Apparently, 30% of home air is from the attic and we had some mold up there. Sealed off attic to inside of house and had new insulation put in (new roof added last year).

 

Son did muscle test for mold again after all of this but it was during a time when we found a shower leak in our newly remodeled bathroom. We are hoping there is no more!

 

Our dr. tried Dr. S's protocol in a round-about-way. She kind of said, everyone has HLA's but that does not mean that you will have problems so it is more of a tool in looking at several things. We tried VIP with no success, but it was before remediation was completely done. Probably best to follow Dr. S's protocol as I think we wasted some money on treatment because it was not done in the right order.

 

My son is still taking chlorella & Fermented Code Liver Oil (was Salmon oil before latest flair) for detoxing. Never did the cholestryamine for him.

 

My husband was on the cholesyramine for a while (after taking chlorella/salmon oil for a year on his own) but had to stop because his cholestrol levels became too low. DH is now doing thyroid meds. and dealing with sinus/chest issues but not detoxing. He is also, hopefully getting tonsils out soon because of all of this as well.

 

Good that you found this out now as mold can create some huge health problems in even totally healthy people. Best wishes on treatment!

[mama2alex]

My son has the 15-6-51 combo which means that he would not recover from lyme on abx use alone.

 

Thanks for all this information! Just wondering how you knew this combination would mean he can't recover from Lyme using abx alone? I thought certain combinations had trouble detoxing from Lyme, mold or both. I didn't know they meant certain treatments weren't effective.

[JuliaFaith]

My son has the 15-6-51 combo which means that he would not recover from lyme on abx use alone.

 

Thanks for all this information! Just wondering how you knew this combination would mean he can't recover from Lyme using abx alone? I thought certain combinations had trouble detoxing from Lyme, mold or both. I didn't know they meant certain treatments weren't effective.

Found it in Dr. S's book "Surviving Mold". Bought the book from his website. There is a lot of useful information in it but also some legal cases that I skipped over. Just wish there was an index as it is difficult to get back to sections where I found useful information. Have heard that his prior book was easier to read but not sure if it has all the new info. in it that this one has.

[MichaelTampa]

I'm no expert for sure, I think the instructions in the book are a bit tricky to read, but it looks like this translates to 4-3-53 (multisusceptible) from one parent and 8-4 (no known significant) from the other parent. Is that how you translated it?

[MichaelTampa]

Julia - how did you seal your attic from your home? Our attic is terrible, I'm sure we're going to need to have that done well to have any hope of clean air in the living space.

[JuliaFaith]

Julia - how did you seal your attic from your home? Our attic is terrible, I'm sure we're going to need to have that done well to have any hope of clean air in the living space.

We actually had a 'remediation contractor' do it since my dh has had health issued. Contractor crawled around in a full painting suit and respirator with expanding foam. He did this before insulation was removed. Anywhere wires, fans, lights (have to read up on these because of possible fire hazards with different kinds) etc. go into attic. Afterwards we decided to replace insulation so he removed old stuff and vacuumed. Seems to me would be better to do this first. He had another contractor put in venting pieces and spray in insulation. Was told 30% reduction in utility bill which was right on with this month's.

[mama2alex]

I'm no expert for sure, I think the instructions in the book are a bit tricky to read, but it looks like this translates to 4-3-53 (multisusceptible) from one parent and 8-4 (no known significant) from the other parent. Is that how you translated it?

 

Yes, and thanks for taking the time to translate the numbers. The weird thing is that it looks like the 8-4 comes from me. My other allele is 13,6,52A, as stated by my doctor - this is the mold susceptible one. So that would mean the multisusceptibility comes from my husband, but he is fairly healthy. I will let you all know how the doctor explains this on Monday. I supposed there could have been an error on one of our tests.

[mama2alex]

I saw the doctor yesterday and Michael, you were right. DS has the 4,3,53 allele, which means multisusceptible. The doctor says my husband can have this allele and not necessarily be sick, but it does mean he's vulnerable to some degree. Once we are out of the house, we'll do more testing for mold toxicity on DS - MSH, C4A, VEGF, etc.