Dore's appt

Hi Forum,

I thought it is better to make an own topic then stealing someone else his topic.

Today I met my doctor and it was a good meeting. He was not very happy with my ferritin, because it is already 6 months (in my thoughts: 2 years) the same. At the end he underlined that he thinks we will see soon a drop in the ferritin. I think his definition of soon is within three months - then I will have the next appointment. He also believes that my hgb dropped too low. So next friday I will have an extra transfusion (1bag) and the other friday the planned transfusion (1 bag). (...)
He told me that tinnitus is something I have to deal with for the rest of my life. I never told about this here, but I have this since a year and it this really annoys me. Most of the time I go to bed sooo sleepy that I do not even hear it.
I told him that the ENT-specialist dont want to remove my tonsils. He told me that is always the problem. The ENT wrote something like this "very smally and peacefully tonsils'. If I still want to have them remove I should visit the ENT when I got a really bad sore throat infection.....
Eyedoc is moved to 2010.
T2* wont be able in our hospital untill it works by the other big hospital. The last time they had such software too, but it did not work. I am very thankfull to hear that he will let me test in the other hospital if they got the software. So we dont have to wait in untill my cardio said OK we will buy it too. They expect to have this soon working. So I think I got already one thing to do during my summer.
DEXA-scan is moved to 2010 or 2011. I was finally able to have a look at my results. I am under the normal ranges. So even when I start to take vit d and dairy very brave, I think I still need a treatment for this. This treatment will not start before the ferritin is within normal ranges. Doc talked about meds we have discuss here. They can IV: every month or every year(!). cortison?? It is like the fluoride on your teeth, he said.

I think I will discuss the supplement issue the other time. All documents from my child doc are gone, but child doc was the only who let always lets my minerals levels(record:16 tubes of blood). But, first I need to discuss this with my parents.

I think this is all what has been said during my vsiit.(...)

Thank you for reading and thank you for keeping my brains fresh.

Dore

p.s. If Rafael Nadal beats Tsonga tonight; I will see him playing saturday night. So please, fingers crossed! Also I will eat my first steak in 6months! Yummy

Note: I am editing some of my posts because of personal thoughts. Dont worry, the medical thing will stay here. I still must write everything what i put here down in my own file. Lots of things I couldnt remember already.

Hey Dore,

I am sorry for you Tinnitus problem,but do you know Adolf Hitler and Vincent Van Gogh also had Tinnitus and David Letterman and Jack Straw also has Tinnitus  so don't worry you are not alone.
I hope your T2* will be done soon,are you taking any kind of supplement? If not start right away.

I hope your wish will come true and Rafael Nadal will win  .

Good Luck.

Zaini.

Dore, the term you were looking for is conference call.

Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem, but antioxidants can be useful in helping prevent the tissue damage that is caused by iron overload, so your supplementation program should be aimed towards that. I know you're hesitant about this but the effects of antioxidants are well proven in terms of protecting cells from the oxidation that iron causes.

Dore, you need to concentrate on chelation right now. IP6 is a dietry supplement(natural) that prevent the cell damage caused by iron overload. In Oakland, they told Sharmin that taking IP6 saved little A from the oxidative stress due to iron overload. So please concentrate on this

wish you luck



Andy

Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem,

Out of curiosity, why is that???

manal

Core,
PKD is treated in Oakland.  I have requested more info & they will email it to me.
PKD patients have SQUID tests done here.  They suggested that you can go to Germany or Italy for SQUID as well.  I will let you know when I get more info.  Some patients take more time to respond to chelation.  Ferritin doesn't coordinate well with LIC.

Sharmin

Hi Manal,

The reason that supplements won't help with Dore's inherent disorder is because they will not replace the missing enzyme. The red blood cells destruct because of this and supplements won't affect that. However, antioxidants can protect against damage done by iron, so they can be of value for the secondary problems.

Thank you all And Sharmin, I am really happy that you asked my question. I know we have SQUID in Hamburg, but I am only in for it. And i got that nasty strange port-a-cath. I am really sorry, but I am too tired to answer or comment any other thing. I can only ask things.

Ferritin doesn't coordinate well with LIC.

What's LIC?

I am going to share something with you very soon. I came across an interresting article - remind me of it please. Ach, we all hope that there comes a day that they can give the missing things, or in this case the missing enzyme. 

I cant find IP6 here...

Rafael Nadal (Esp) just beated Jo-Wilfried Tsonga (Fra).... I will see him playing tomorrow night!!!! I have heard he walks through the location, but if he does tomorrow I am a way to shy to ask for a picture..

Thank you!

Sleep well, Door

p.s. what is the past from win?? We use the same word. That's really confusing!

Past tense of win is won. LIC is liver iron concentration. And IP6 is also called phytic acid or inositol hexophosphate. Good luck to Nadal.

Quote:

Rafael Nadal (Esp) just beated Jo-Wilfried Tsonga (Fra).... I will see him playing tomorrow night!!!!

Mes felicitations. Amuses toi bien.

Quote:
I will eat my first steak in 6months! Yummy
Bon appetit, dore.

Prends soin de ta sante et porte toi bien.  Essaie de reduire ton"ferritin".
Bisous
Jade

Jade

One of my dreams was to talk in french. Though i studied french for 6 years in school everything just evapourated

manal

Hi Manal

I prefer french to any other language.  It is so lively.  Do you understand what i have written?

Jade

Jade, what i can understand is the whole meaning but not word by word. What i can get is

Congratulation,enjoy yourself, enjoy your food, take care of your health, reduce ferritin wooo that was really hard. I love the sound of the language

manal

 

Exactly Manal.  You understand then.  The sound is nice, isn't it? You open your mouth to say the words unlike english where you only speak half open mouth.  Hope u understand what i mean.
C u

Take care

I thought I had answer already, but I should have done something wrong.


Linguistics:

He wins = hij wint
He won =hij won

That's why I sometimes become confused! We have more similair things or the some word, but in an other meaning  :

Tinnitus:
We got the huge autobiograpy about Hitler, but I have never heard my father talking about that - he is the only one who reads them plus one of his brothers). And I know that Vincent van Gogh cut one of his ears....I love his paitings btw. The tinnitus is pretty worse at the moment. I hope that it will get less when my hgb will reach the 7. Sometimes I have the feeling that there is something in my ears, but ent did not see anything 

Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem, but antioxidants can be useful in helping prevent the tissue damage that is caused by iron overload, so your supplementation program should be aimed towards that. I know you're hesitant about this but the effects of antioxidants are well proven in terms of protecting cells from the oxidation that iron causes.

@ Everyone: It is pretty difficult to understand, is not it?

What are anti-oxidants? (A warning: we believe more in vitamins than anti-oxidants here  )

Je parler françias moyennement. Demain arriver (?) un invitéé de le (de+le=?) Cameroun. I fais la cuisine; diner.  Je m'ai honte terriblement pour mon français.

I have had French lessons at highschool for 6 years, but it all left me during the past 3 years. If anyone knows a good site to refresh my French: tell me, svp.

I really love French and Spanish. These are beautiful languages and indeed more lively than Dutch. Dutch is very hard to learn so dont learn it hehehe!

Grosses bises,

Dore
p.s I really, really enjoyed the saturday night, despite that I was too late to ask for a signature. My seat was in the roof (I still wonder why they say it is a seat) so I went to my father. He sat most of the time on the con stairs, because the men before us was too high for me. Though it were still not the best seat. My father has very bad eyes (he is nearly blind due lyme disease) so I had to tell them why the crownd was making sounds. My father told me that we will go next year as well and he will buy tickets for (real) seats in time. 

You get also the best wishes from my cat 

I will continue my search for IP6.

Antioxidants are any substance that reduces oxidative damage. In the case of iron overload, the oxidation is caused by iron. Many vitamins such as vitamins C & E are also antioxidants, so you can't really separate the two. IP6 is related to the B family of vitamins and is found in every cell in your body.