Looking for info on HLA testing. The dreaded Gene!

Hey all,

So I recently had the HLA Gene testing done. Found out I have the dreaded Gene on one side and a post Lyme Gene on the other. Anyone have any insight on this. I understand it means my body won't recognize toxins so I'm not detoxing them.

Does this mean all the detoxing methods I've done so far are useless??

If my body doesn't recognize them then it wouldn't matter how much I dry brush or epsom bath or drink lemon water right?

I'm assuming this would explain my 10 months of treatment for Lyme/Babs with no improvement. Actually getting worse ( been sick for 3 plus years)

Anyone have any recommendations, treatments ideas, or just advice from having the same genes.

Thanks guys!

Just means you need to take things slower than most and heavily incorporate binders. Make sure you are in as mold free an environment that you can. Cholestyramine is by far the best binder you can get. But it's prescription med. For now use charcoal for a binder and high dose fish oil will help as well.

You know us lymies are always looking for someone to come up with a magic pill we've never tried that miraculously heals us. Lol

Wandering how many others have these genes and how they are dealing.

On another note. How much chlorella are you guys doing daily? With or without food? Early or late? So much mixed info online.

Cholestyramine will help. Depending on the gene you tested positive for, you could either be unable to rid yourself of mold toxins, lyme toxins, or both. According to my test results, I have trouble with mold, but not lyme toxins.

The way cholestyramine (CSM) works is it binds everything in the small intestine. It does not leave the intestines until its ushered out with your stool. What happens when you have a gene that doesn't allow you to rid yourself of certain toxins is the toxins circulate through the bloodstream, they are squeezed into the intestines by the gallbladder and reabsorbed into the bloodstream instead of being ushered out through your stool.

This is where a powerful binder like CSM becomes necessary. Instead of being reabsorbed, the toxins are binded up by the CSM and ushered out of the intestines via your stool. Once this happens, there is free space in the bloodstream for more toxins to fill up. This is when they start releasing themselves from fatty tissue, like your brain, etc... and move into the bloodstream. If you do this too fast, you will cause a herx. So you have to start out slow.

So basically, what you are doing when you detox while having a gene that won't let you get rid of toxins is your mobilizing toxins from one part of the body to a different part of the body causing a nasty inflammatory response. Thus the term, Chronic Inflammatory Response Syndrome (CIRS).

Post Edited (Hoagie) : 8/12/2018 12:56:28 PM (GMT-6)

Rinzler said...
Thank you Hoagie and Walkingbyfaith.

Good points and information. I see me my llmd in September and we will discuss the csm binder for sure again. She originally didn't want me to start it in fear it was gonna make me above and beyond sicker than I am. Seems necessary although I wander if it will affect my herbal protocol.

Also I have not treated Bart specifically. Just bactrim. Did 3 weeks. Had to get off. Super dizzy herx craziness. We really wanted to just stay on the Rawls protocol for a few months only but it started bring ging out crazy Babs head symtoms so I started minocycoline last Saturday. Hopin to kill some extra bugs It might all be too much for me. I'll email her tomorrow.

Thanks again all.

Take extreme care with CSM. Many Patients, including me, cant or couldn’t handle even 1/16 tsp once a day. If that happens, bentonite clay and activated charcoal are your best friends.

Rinzler said...
Good advice 18years thanks. I take activated charcoal once in a while before bed. I'm always concerned it'll wipe out my herbals. I take chlorella in the morning and afternoon. I will look into the bentonite clay. I def don't need to add anything that'll make me sicker. And that was my drs concern with the csm also.

You're welcome! The general rule for binders is that no herbals or supplements or any meds, 2 hours before you take them, and then you can resume herbals or meds 2 hours after you take your binders. I believe it is 4 hours before and after for CSM, but I could be wrong. I haven't used it in so long, plus total mental deficiencies from mold and Lyme leave my short term memory limited. I hope this works out well for you!

I'm not totally clear on the exact mechanism here but I don't think it has anything to do with detoxing what so ever. HLA genes encode MHC molecules which are expressed on antigen presenting cells. In other words these are the molecules that take bits and pieces of pathogens so that T cells and B cells can recognize them. The different HLA types process these bits differently and so if I had to guess the connection to autoimmune disease probably has to do with variants that expose cross-reactive epitopes. In other words, display parts of the pathogen that bind the same antibodies or T cell receptors that bind human tissues and thus stimulate their production.

I could be wrong but as far as I know everyone still disposes of these "toxins" the same way. They just might process them differently in the interim for antigen presentation.

My guess is that this will have little bearing on your healing. I really doubt there is any "dreaded gene". More like, there are a whole bunch of polymorphisms that developed in different environmental contexts which have no been shuffled up by human movement around the globe. Each one increases your risk of one thing and decreases your risk of another. You may be more prone to Lyme arthritis or some other Lyme induced autoimmune disease but I don't see the relevance beyond just characterizing a particular flavor of sucky illness. The alternative is that you could have a gene that leads to more severe neurological illness or cardiac. In any case the immune response should contract with pathogen eradication period. I've not seen a single credible argument that these genes determine outcomes beyond how we respond to ONGOING inflammatory stimuli

Rinzler said...
Interesting thoughts thanks psilociraptor. What you said was a little beyond my medical knowledge but again I was under the impression that In order for your body to detox and remove toxins it's got to recognize them as such. The prob with these genes is there not being recognized by T and B cells so they keep being redistributed back into the bloodstream. Certainly not saying this is a fact but just how I understood it.

It makes sense to me though seeing as some people here can work or travel while feeling crappy and others like myself are so bad daily I can't do either.

Yes and no. They do play a role in T and B cell recognition, but debris clearance is mostly mediated by the innate immune system. Ie macrophages, neutrophils, dendritic cells (phagocytes). These don't hone in on such specific details like T and B cells do. They just kind of gobble up and break down all sorts of stuff. And HLA doesn't really have anything to do with debris uptake and disposal as far as I know. In other words, everybodies immune cells are taking this stuff up and disposing of it (at least as far as HLA is concerned) but not everyone is processing the debris the same way for presentation to the adaptive immune system. Which really doesn't matter all that much since antibodies and T cells have more to do with controlling live infection than detoxing dead microorganisms. The point of antibodies is either to block pathogen adhesion to host cells, flag it for destruction by a phagocyte, or cause bacteria to stick together. T cells on the other hand kill cells that are infected.

These adaptive responses occur because exposed areas of the pathogen are usually highly variable and help "cloak" it from the immune response. So it has to be able to adapt to recognize new chemical motifs in live bacteria. By contrast, exposed antigen from dead microorganism contains otherwise hidden domains like the lipids that are normally embedded in the membrane and are highly conserved in most bacteria and readily recognized by the immune system. There is likely much less variance in our ability to recognize this and "detox".

In any case... the "toxicity" of these compounds is directly related to their immunogenicity, or ability to cause inflammation. If they are causing inflammation that means they have already been picked up by an immune cell and will be processed for degradation. There is no doubt that genes contribute to successful control of infections as well as the development of specific symptoms and this is certainly a contributing factor to why some feel worse than others. But this particular one has little to do with detox to my knowledge or your body "not recognizing them". As far as I understand it's the complete opposite. It has to do with your body recognizing parts of the pathogen that are similar to human tissues and thus stimulating autoantibodies or autoreactive T cells.

Post Edited (Psilociraptor) : 8/13/2018 1:15:06 PM (GMT-6)

astroman said...

k07 said...
Hard to know about this HLA gene stuff. Some docs are now saying it doesn't really make a difference and those with dreaded gene have same outcome as those without. A few prominent docs no longer even test for it.

I have the lyme gene (15-6-51). I tried welchol for a bit and noticed no difference. There's really not a ton of info out there on this gene. I did not get better with abx either.

k0 - thats an odd gene # (15-6-51) is that the RS # (since most genes have some letters) only with dashes in it for some reason? Something missing? Cant say I've seen this before.

thanks

Here’s some explanation of it.
www.myhousemakesmesick.com/hlacalc/15-6-51.php

Test was done through labcorp (serum). Not something you can get through 23andme.

Bumping this old thread, hoping Psilociraptor will see this.

I have a multi-susceptible gene and Lyme susceptible gene. I have been and still am mold sick with CIRS. While I got out of my old moldy house and office almost 3 years ago into a less moldy relative’s house, I did not recover much, at least not from toxins and cytokine induced inflammation.

Just recently, I learned the relative’s house is now worse than the house I fled from and am now trying to stay in my car for the most part. My car is moldy, too, but I don’t know how bad.

Beyond the mold, I have also experienced cytokine storms on numerous occasions. Several times following a week of abx and most recently, after a stomach virus last December.

I know the Shoemaker protocol has succesive steps following removal from mold exposure, culminating with the use of VIP for those who remain symptomatic. I was never able to follow through with the protocol. I got horribly worse on Cholestyramine and had to stopped after 11 days.

Now I am right back where I started because of mold again. This time I have nowhere to run. I don’t know how to get out of this he**ish cycle.

Do I have any way to alter my body so it isn’t hypersensitive anymore? I have MCS pretty bad, too. That actually gradually got worse instead of better.

Some symptoms did improve - mainly joint stiffness - with Buhner’s protocols. Even when I have had improvements, they don’t last. Symptoms still fluctuate and rotate.

I guess I’m looking for answers as to why I am so hypersensitive and have cytokine storms and if there’s any way to turn off the switch.

Bump up post