Hi all,

Anyone knows about HPU (hemopyrrollactamurie) or a more international name: China doll disease or mauve factor? I came across this info because everything I have ever tried to get rid of my KP failed. When I told my story and my complaints to a woman who practices the alternative medical science (shiatsu), she said she thought I could have HPU. There is an online test I had to fill in and my score was definitely high enough to test further with a urine test.

I will give a short explanation: HPU is the status by which the body seperates a certain matter, called HPL, found in the urine. This excretion involves the loss of zinc and pyridoxal-5-phosfate. In most of the cases a deficiency of manganese is found as well. These deficiencies cause a weakened immune system, infections, blood sugar variations, problems with the intestines and with development of gristle.

The main complaints are:
- muscle weakness
- problems with joints
- gastro-intestinal problems (stomach and intestines): fungus like candida
- haert –and vessel diseases
- sugar problems
- fatigue
- migraine
- allergies (gluten)
- infections

Other complaints:
- paleness of the face
- striae
- skin problems: dry skin (KP?), redness of the face due to enlarged vessels (KPRF?)
- frequently have to urinate
- cold hands and feet
- psychological problems like depression

HPU patients have also a problem with the thyroid gland, which can lead tohairloss of the eyebrows, especially the outer part. Also the tongue can swell as a result of oedema, whereby you can have a print of the teeth in your tongue. Why: a gluten intolerance is associated with problems of the thyroid gland.

Also HPU patients have difficulties with converting pro-vitamin A (beta carotene) into vitamin A. Vitamin A is a skin vitamin, treats skin diseases and stimulates the growth of teeth, bones and skin. I know this subject about a deficiency in vitamin A is discussed a lot here. Maybe that’s why we have difficulties absorbing vitamin A?

The liver has problems with detoxing the body. The liver works in overdrive, and can’t detox the body well enough, so the toxins search a way out. Maybe through our skin?

HPU is discovered in 2000 by a doctor named Dr. Kamsteeg. So it is not (yet) very well known, and also very controversial, especially by the modern medicine. It is also mixed up with ME, a chronical fatigue condition. Before 2000, this condition did exist already, but it is since 2000 that it is called HPU.

I know this can be very odd, but this can clarify certain things with relation to our skin problems and the internal issues. I’ve send my urine sample on Monday, so I will have to wait a few weeks till I get the results. If I get my results, I will let you know.
For more info you can go to www.hputest.nl. It is a Dutch website, but it is translated. Maybe you will find some more info there?

I hope this post isn’t too long and boring. And I do hope that this info will help others to recognise their complaints and do some research.

I know KP is very frustrating, but maybe this is the answer? I don’t know either, but there are definitely some things that are very interesting…

Belgiangirl

Belgiangirl,

Very interesting. Please keep us posted.

kebod

Hi,

A few days ago I received the results from my urine test and apparantly I have HPU. Now my next step is an appointment with a doctor who is familiar with HPU next Monday, the 28th of April. Normally he will take blood to see what I can do about it... Actually this is a bit of a relief. Maybe this is my answer???

I will post more in a few days.

Greetz
Belgiangirl

Err, how do you get tested? I clicked the "HPU test" Link and the whole Page is in another language o,0. I'm on the English part too...

Really? I know it is a Dutch website, but normally if you click on the link, you see a page where you can click on the English version of the site... Maybe this link is the correct one: The official English HPU website - KEAC

There is an online test with questions to answer and if you have a certain score, they advise you to do a urine test to see if you have HPU (just to be sure).

Let me know if it works or not...

Greetz
Belgiangirl

Dear Belgian girl, I dont want to discourage you but I am a bit sceptic to this HPU.. I am dutch as well and I wonder If you knew this: Hemopyrrollactamurie - Wikipedia it's at the end of the page..Let me know if the treatment is working for you.. maybe there is something about this than!

Hi , this is very interesting, I tought that the way to get rid of HPU was to take vitamin B6 and Zinc supplements? because I think I have HPU too (cold hands, fatigue, pale face, and many other symptoms) maybe this is why I got keratosis too, hope you will find a good treatment with your doctor, have a good day ^^

Dear Regina,

Yeah, I know that this HPU thing is very controversial. Some people believe in it, and others don't. Now I choose the side of the believers, because I've tried everything and nothing worked: I too (like Baronster) had a yeast, so I went on a diet for several months, and my intestines are healed. I took vitamin A without results, and pro-vitamin A (bètacarotene) because vitamin A can be toxic, but when I think about it now, the vitamin A worked a little bit, and the bètecarotene didn't. Now I have a clue why: people with HPU are not able to transform the pro-vitamin A into vitamin A. I took omega 3 in different forms: fish oil and flax oil, but nothing, not even a little progress. So for the moment, I choose to believe that HPU can be something (for me) that may contribute to the process of my KP and to the not-healing of my KP. Anyways, this Monday I will know hopefully know more about it...

Belgiangirl

Hi Kaede,

Yep, that's correct: People with HPU need to take an active form of vitamin B6 and zinc, in larger amounts than other people. But the reason why the doctor gonna take blood is to see if there are other problems too. They advise you to get tested for 4 things:
1. fructosamine
2. gluten (I had a gluten intolerance when I had a yeast, but normally now I haven't anymore --> also got tested for that like Baronster)
3. hormones
4. histamine: a lowered histamine level causes skin conditions, cold hand and feet, fatigue, itchiness,...

So we will see what the docter has to say about it, and which vitamins I have to take. But I will let you know!

Belgiangirl

Went to the doctor and got some active vitamin B6 called Pyridoxal-5-fosfaat. Plus I need to take a vitamin B complex and a multi especially for people with HPU. He didn't take blood yet, that's something for next week, for my next appointment. Apparently when you have a deficiency of B6, you also have a deficiency of vitamin B3, and you need vitamin B6 to absorb vitamin B3. That's maybe something for the other thread about niacin (= vitamin B3)? I don't know, it is hard to believe in something when you have tried already so many things and to find just THAT thing what you need. Also, the knowledge about supplements (vitamins, minerals, omegas), balance between mind and body and in general the functioning of the human body is very complicated and requires a lot of help from other persons (doctors). It is so frustrating... I will have to wait and see what happens.

Belgiangirl

HI belgiangirl I hope the best for u too! I did the test and there where loads of symptoms I had too! the thing is..most symptones are soo common! but I can eat whatever I want and one of the symptones are that you gain weight easely right?? I'm sceptical but I'll read up to this because there might be something!

the internet test I mean

Hi Regina,

Yes I know, the symptoms are very common, but if you had a high score on the internet test, maybe you should do the urine test as well. I too tested very high on the internet test, and I tested positive on the urine test. And yep, one of the things is that you gain weight easily, especially after pregnancy. One of the symptoms with 'HPU people' is that you are very flexible in your joints. For example, you can bend your thumb against the inide of your arm/wrist. Do you have that too?
Keep me updated please, because this is also very new for me...

Kiss
Belgiangirl

yes I can with my left hand..how's the treatment going? Hopefully well
xxx

Last week I discovered I have a yeast problem, candida. Yep, last year, around the same time, I also had a yeast, but that one I got rid off. Now again the same problem. Reminds me of Baronster (fun!)... Again on a strict diet... Life is full of surprises :-). So that I gotta fix first, but I keep taking my vitamins (B6 en B complex), we will see. I am a bit less tired, I suppose. That's funny, because normally with a yeast problem, that's not gonna happen. We will see, but I have to focus on getting rid of the candida first, because it all starts with a good functioning of our intestines heuh?!

Kiss