posted
SOMEBODY!!! I know someone here knows about this blood disorder or whatever it is...........
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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SForsgren
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posted
I don't think anyone knows for sure. I am HLA-DR4 positive as well. Some argue that means that you are more prone to arthritis, autoimmunity around Lyme Disease and less likely to respond to treatment. That said, 30% of caucasions are HLA-DR4 positive and so it is not "rare". It "might" be an indicator if treatment is not going well, but based on what is known today, I am not sure it tells much or helps much. My LLMD didn't pay much attention to it and we only ordered it at my request. Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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bpeck
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posted
Hello:
We just had a pretty good discussion on the 10th of APRIL about tissue type.
SForsgren
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posted
It is not a blood disorder. It is a genetic variation. Nothing that can be done about it and whether or not it has significant impact is still not clear. Seems to be an indicator of poorer treatment response, but that does not mean that a person will not respond with proper treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymemomtooo
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posted
There is a book called the Mold Warrier, by a Dr in S. Md ,that attempts to explain this.
It is a little over my head but my daughter also has the gene along with some other bad ones and it was explained to me that she is more susceptible to lyme or any immune system disease, as a prior poster noted.
Considering all of the genetic issues she is also unable to adequately eliminate toxins..A double whammy..
I think some of this is so new that many drs are not as knowledgeable as they could be..
But if the mold ghru is accurate, this is a marker for major problems if exposed to a neurotoxin..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I have that and because I had the lyme vaccine in 1999 they tell me it caused me to have chronic lyme/autoimmune disease.
I have had a few good days, even weeks here and there but am still unable to work and done in by lyme.
I dont see why it wouldnt also cause people who got lyme from a tick more problems fully recovering. In fact it make good logic for my confused brain.
Posts: 561 | From connecticut | Registered: May 2004
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bpeck
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posted
Sofy: I hope you were part of the class action law suit against Lymerix. GlaxoSmithKline should be taking care of you for the rest of your life.
posted
I was told by my doc it is a genetic variation that is more likely to predispose one to an autoimmune disease. Since many traditional docs think post-treatment persistent lyme is from an autoimmune reaction (as opposed to a persistent lyme infection), they like to vaguely say you have an unnamed autoimmune condition when a month or so of their antibiotic doesn't "cure" you. Many will expect you to just live with it. (But whatever you do, don't go taking steroids if they offer them to depress an "over-reactive" immune system. Get to an LLMD instead! Steroids do depress the immune system, and thereby enable the lyme bugs to spread more easily.)
There is some evidence that in some people there IS an autoimmune component, but it certainly does not explain all persistent lyme cases. I was negative on the HLA-DR4 test, which my ID doc did early on, so he was willing to keep working with me, vs. just sending me home with a vague "trash-can" diagnosis and his sympathy.
Posts: 193 | From Virginia | Registered: Oct 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Some info on how HLA works from Mold Warriors:
quote:We know that the foreign antigen has to be packaged with HLA to result in antibody formation. The dendrite cell, which is a specialized white blood cell , "presents" foreign antigens to a unprogrammed (called "naive") T lymphocyte for more processing, after it coats the antigen with HLA. Then the T lymphocyte, now programmed to respond to the antigen/HLA complex, presents the combo to the immune lymphocytes (B cells) that actually manufacture the anitbodies.
Now, understand this: one of the toxins anthrax makes, called "lethal factor", actually blocks HLA-attaching activity in the dendrite cells. So, if lethal factor- a toxin - is present to stop the immune antibody response before it starts, then no toxin-specific and toxin-clearing antibodies are made. The B cells might have been able to make antibody before, but not after toxins stop the process.
HLA is involved in whether you can form antibodies to remove pathogens and toxins. Some HLA types have better ability to work in the presence of specific antigens. That is the basis of the HLA gene typing.
Also note that certain toxins can interupt this process. Dr. S's theory proposes that certain people are susceptible to toxins produced by Lyme and molds, among other things, and those toxins paralyze the ability of the body to produce antibodies and remove the toxins.
HLA DRB4 is just one of the possible gene types that a person can have, and there has been some association with more persistent Lyme arthritis in the presence of this gene, but other types have other susceptibities. Look at the thread barb has linked to, and you will see some more.
My daughter is also HLA-DR4 and HLA-B27 positive. We see Dr. J. (Ct) on Friday. I have alot of questions about how treatment may differ for those with these gentic markers. I'll let you know what he says when we get back.
Lymemomtoo--How did you come to realize that your daughter cannot properly eliminate toxins from her body? Is the relation associated with the HLA-DR4 gene? What treatment options has her Dr. used to address this problem if any??
My daughter tried the Podi foot pads to rid your body of toxins the other night and got really sick from them!!?? Has this happened to anyone else? Does this mean that she is overloaded with toxins or are they too much for a child to use??
Thanks all,
Lymedesign
Posts: 263 | From Georgia | Registered: Feb 2006
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lymemomtooo
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lymedesign, I am not sure..We had a large number of tests from the S. Md.Doc..I would have to go back to see the reports, if and when I find them..
I copied them for all Drs and then put in safe keeping..Well, senility is rampant here..I know they are in one of 3 or 4 places but have not searched lately.
He prescribed a cholesterol med(cholestramine > May be butchering the spelling) that binds to the toxins to help with elimination..I would think the podi patches would help some..
But if you can not eliminate the toxins, they will continue to intensify and cause more damage.I am convinced that our daughter developed juvenile diabetes from lyme. There is no family history of this..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Thank you all so much for your responses. My Daughter's LLMD doesn't seem to think much about it but she has only gotten worse this past year
that he has been treating her. He just tells us to go to this person or that person and do alternative things. We go to him to be charged nearly 200.00 and he tells us to go see
someone else. GRRRRR, I am so frustrated. He didn't even explain what the HLA-DR4 was!!
Thank you all,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
There is real merit to the cholestyramine protocol recommended for the removal of toxins as outlined in the MOLD WARRIORS! My daughter has done it. I talked to one person at a support meeting who uses it routinely and does nothing else. Check it out!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
The class action suit against the vaccine has been settled. It was not to get financial damages for those who suffered adverse reaction, but to force the company to give adequate warnings about the possible side effects for some people.
However, some private individual lawsuits were also filed that might involve financial damages, don't know how these have fared in court or how many there were.
Posts: 8430 | From Not available | Registered: Oct 2000
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riversinger
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posted
quote:Originally posted by lymedesign:
Lymemomtoo--How did you come to realize that your daughter cannot properly eliminate toxins from her body? Is the relation associated with the HLA-DR4 gene? What treatment options has her Dr. used to address this problem if any??
The full HLA testing only shows the susceptibility. If you know you are just HLA DRB4 positive, that is not the full testing. You should have 5-6 gene types. Those are then looked at as triplicates, that fall into certain categories that show susceptibility to a variety of things.
To see if the susceptibility has been triggered, there are other tests to do. This looks at hormone levels, cytokine reactions, and other immune responses to see how the body is handling, or not handling a toxic load.
How those results come out will dictate treatment. Most people start out with a binder for the toxins, either cholestyramine or Welchol. Sometimes they take Actos, which will lower certain inflammatory chemistry in the body. Hormones may need to be supplemented, and other treatments added according to response.
You can find a very good explanation of how all this works in the book Mold Warriors. www.moldwarriors.com
No, I have never heard of Glutathione transdermal creme. What is it for and what does it do?
Also thank you for the info. on the MTRFTR gene. I have never heard this mentioned either. What labs runs this test? This is very interesting.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
My son is HLA Dr4 and I also got very limited info from his Neuro LLMD on this....What I learned is what was just posted and I learned from this group and Mold Warriors.
My son is autistic and was having a horrific time with lyme treatment...Went into severe aggressive episodes...that was how we knew he was not eliminating toxins...He wasnt getting any better and the herxing was awful...
Now my son is HLA DR4, has autism (an autoimmune disorder) and has lyme...You could say that the HLA DR4 explanation of lyme autoimmunity fits him to a T....Then others would argue that....all I do know is that his autism has been completely exaberated during treatment.....
I have many people asking me why I am even treating him....as he is worse now than he ever was....maybe I am wrong...but it seems to take people years to get better and I have to give him that chance...
He is a great responder to CSM (questran) so that may be something to look into...
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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Thank you for asking, but yes, she has been tested and treated for Babs, Bart, Erich and Lyme for the past year. She has only gotten worse and
now can't even eat solid food or most liquids without severe pain and bloating. She has gotten to the point that she will only drink juiced
carrots and young coconuts along with her million and one suppliments for healing the gut, killing candida, and decreasing inflammation.
She also drinks nearly a gallon of water a day too.
Thank you all for the information. I have been reading and reading. Have decided to try the Hyperbaric treatment in Chico. Hope it helps her, we are at our wits end.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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lpkayak
Honored Contributor (10K+ posts)
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posted
ICEY-you are not having very good luck with your llmd. also-you are so frustrated.
i have the gene-and my llmd did not think it would prevent me from killing the lyme...stopping the infection. but he said-i would have residual arthrits-joint pain. this would be after the lyme infection was gone-or , more realistically, undercontrol.
normally, the llmds treat until all your symptoms are gone for a certain period of time. if you have the gene, and all your symptoms are gone except joint pain-then it might mean it is time to stop lyme tx and just deal with the residual artritis.
the real reason i am replying is: i needed to have an llmd i really trusted and had a good open communication with in order to get as well as i am. i changed llmds 3 times and have been with the one i am with for 10 yrs now. you might wnat to think about getting a doc you can communicate better with. good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lymemomtooo
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posted
I am still not positive what test determined this but the one suggested could be it..Unsure..I trusted the mold ghru to know his stuff when he told us about it..My senility does not grasp all of this info as I should.. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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LabRat
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posted
I carry the HLA-DR4 gene and have been infected since around 93 or 94 and left untreated for a couple of years. I started looking for a treatment for arthritis when I had to use both hands to comb my hair.
I seem to recall that the ``outer surface protein'' carried by this critter is similar in some way to the HLA-DR4 gene some of us carry. It seems our system has trouble telling us apart so we had to rely solely on abx to kill the critters. Now I don't know if this is all true today, you know what was true yesterday may have been found not to be true today but what I do know is when I stop the abx, within a year I start having bad luck, like, double vision, heart attack or the onset of arthritis of my joints!
For the time being I've given up on curing my Lyme and concentrated on containing it. I take 100mg of Doxycyciline once a day, every day I think of it. If I forget a day, I don't worry about it.
One of the main things was getting the mind back in working order. For me this came about from injection of Bicillan LA 2.4-2.8 million units per week and Flagyl, (I forget just how much). This took less than a month to get my mind back, once you have your mind you have most of what you need to battle this bug.
The Doxycyciline imperceptivity eliminates the arthritis and I really don't have any other Lyme problems that I can think of. This is what appears to work for me, why would it not work for you?
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
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bpeck
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Labrat: Glad you've found a way to contain your remaining symptoms. Daily low dose Doxy has a very safe track record (people take doxy and mino for years for acne). I think daily doxy is a better choice tha some of the drugs Drs would prescribe for remaining sysptoms ( or aka post lyme syndrome )
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