Does anyone know the answer to this and if so do you have any literature about it? Thanks!
Posted by Razzle (Member # 30398) on :
They are separate issues.
I don't think I have KPU (the "famous Dr. K" never told me I had KPU even though I did see him), but I know I have one MTHFR mutation. I do not know my HLA-DR status (haven't been tested).
Posted by tickled1 (Member # 14257) on :
OMG, well I think I have all 3!
I have KPU and my HLA-DR results showed I have difficulty clearing Lyme or Mold toxins.
MTHFR also fits with my recent Metmetrix results and low glutathione. My symptoms also fit with MTHFR.
What are the chances someone could have all 3?!
Posted by Jane2904 (Member # 15917) on :
Our daughter has all three. She has so much difficulty with treatment.
Posted by tickled1 (Member # 14257) on :
I'm sorry Jane. Would you mind sharing a little info on how you go about managing them? Did your LLMD dx all 3?
Posted by tickled1 (Member # 14257) on :
Jane, I just saw you are in MA too! I think we've "spoken" before. I will PM you.
Posted by GiGi (Member # 259) on :
As a starter, I would rule in or out/treat KPU and that will affect everthing else in the long run.
You cannot detox anything when the most important minerals and other substances are missing. And a toxic body has trouble dealing with infections.
Replacing missing nutrients in order to facilitate detox is priority, per Dr. K.; then moving on to treat parasites. That will change the overall picture completely and infections are brought under control much more easily.
Take care.
Posted by Maya12 (Member # 36392) on :
Just wondering if someone can tell me what kpu and hla-dr are just trying to do as much research as possible
Posted by GiGi (Member # 259) on :
Maya, this is where you can learn about KPU and a lot of related info -
take good care,
Posted by Tammy N. (Member # 26835) on :
Please read my new thread on Gilbert's syndrome. Important! Busy now and can't write more.
Posted by tickled1 (Member # 14257) on :
Gigi,
Does Dr. K talk about MTHFR at all?
Posted by sk8ter (Member # 8671) on :
Gigi is Dr. K still taking patients or do you go to one of his assistants? I know the wait is like a year...
Posted by jlp38 (Member # 27221) on :
I think you usually start with one of his docs before you see him, to get all the initial stuff done. I know someone who got in to his office in well under a year.
Posted by GiGi (Member # 259) on :
tickled, no, Dr. K. spends little if any time on MTHFR. I don't think I have heard him mention it once. If he did, I missed it and/or he did not spend much time on it. I attend the majority of his 3-day seminars.
His idea has always been to clean up the body, on all "Five Levels of Healing" (google), and many of our "problems" disappear. So there is a test now for MTHFR? Does the solution come with it? I have not heard of it.
Okay, we have had the Yasko test for several years. People have spend a lot of money to get the lengthy test results. But do we have a solution to these test results? I haven't heard of any that work, except as Dr. K. has been doing and teaching -- "clean up the body, get rid of the toxins" so that parasites and microorganisms no longer find refuge, and health will return.
Granted we are facing huge problems now with EMF, dirty electricity, smart meters, etc., contaminated waters, more and more chemicals, and Lyme Disease of today is no longer the disease that I had 14 years ago. The European Borreliosis transmitted through a similar insect, bb, is not nearly as devastating as the Lyme Disease we catch in this country.
Clean up the body and don't make detox a secondary event or an afterthought in your treatment. It doesn't work. The microorganisms will not survive in a clean body and a clean home and emotions.
Granted we don't have many of the Dr. K. types, who doesn't take no for an answer, but many others are widening their field of vision and are no longer satisfied with years of abx and another relapse next time a stress event takes place.
Tammy's post above is exactly what I am referring to. When she is able to continue her program long enough, I am sure what frightens her now, will fade away. But it takes more guidance in the early stages and discipline to avoid all that it not really necessary.
I saw Dr. K. tonight because I had recently done the CCSVI intervention and he follows my history very closely. When I need any answers or help for friends and family, I also see his former assistants now in their own practice, Dr. AD and AR in Bellevue. He is overseas many months of the year. He changes his schedule frequently and yes, often people, start with his former assistants at CMC. Both have their own practice now and are excellent. I am anxious to see his newer present assistants graduate, because they simply seem to turn out to be great doctors. He is a fabulous teacher - the first time I saw him, barely standing, he taught me how to make my own homeopathic! handing me a bunch of videos and papers -- go home and learn. And I have been learning from him ever since. It takes great effort and at times I didn't think I would survive another seminar. But I did and am very grateful. He told me on day one "you as the patient have to participate and learn to follow instructions." I literally survived Lyme by listening to his lectures on tapes all day long. I taped every one of my office visits. If you have ever heard him talk, you will understand why.
Dr. AD and AR are now using Skype (sp?), and it is legal. In other words, some of the long distance travel can eventually be avoided, though I think there is nothing better than seeing the patient and feeling the patient. They are doing a lot more than prescribing this or that antibiotic and frequent testing is necessary for other remedies that are needed as things get better. Some of the energetic testing can be done in different ways. They are all great in their different ways. Both teach ART now up and down the East and West, and both are wonderful human beings. They are present at all K. seminars and other important seminars learning an teaching.
Call and get your questions answered. And meanwhile detox and do binders!
Take care.
Posted by Razzle (Member # 30398) on :
Yes, there is a protocol for MTHFR. If you get the testing done through Dr. Yasko's website, then you also get a lot of material to study and learn about the genetic variants and the protocols (primarily dietary changes & nutritional supplements) to deal with them.
Posted by Tammy N. (Member # 26835) on :
Gigi - I am very discipled, and reach back regularly to my doctors for guidance. I'm not a wimp when it comes to treatment reactions, and it's not that I'm afraid, it's that my protocols are not working for me. Something is being missed in my case.
Posted by tickled1 (Member # 14257) on :
Gigi,
Where does inability to detox due to genetics come into play w/Dr. K? Does he say there is a life long protocol in that case which I assume it would have to be.
Posted by feelfit (Member # 12770) on :
There are two sides to every coin. And every doctor who has an interest in 'whatever' area- be it genetics, parasites, etc. will have their own theory on what must be done.
As tickled1 infers, genetics cannot be changed. Normal or mutated, they are with you for life.
For those with MTHFR mutations, esp. double copies, supplementation with various forms of B vitamins and various forms of folic acid/folate are needed in order to keep homocystine levels in range.
Periodic testing of blood and in the case of other mutations, urine, is done in order to see where you stand with supplementation.
MTHFR and HLA-DR do not fall into the same testing realm, tickled1, however, they both fall into the line of 'genetic testing' and once tested, you need never be tested again- the results do not change.
Posted by tickled1 (Member # 14257) on :
I wonder which one is the biggest issue for me: KPU, MTHFR, HLA-DR or Gilbert's. I've tested positive for KPU and HLA and have been told I probably have Gilbert's and the symptoms of those could also point to MTHFR as well as my Metametrix results so I don't know where to start with how to address this long term and I'm not sure my doctors will either. I have some appointments coming up so I will have a lot of questions about all this.
I agree with what you say feelfit about every doctor stessing the importance of whatever their particular interest is in. I feel that these detox issues need to be addressed with me before doing any further treatment for my infections. From what I've read, my disorders may be the cause of my infections so maybe if I get those in order my body can take care of the rest.
Posted by tickled1 (Member # 14257) on :