Dore's appt

Thanks for the explanation. I did know a bit about the connection, but anti-oxidant sounds as a empty name for me. Anyway, dad is on his way to the hospital. So next week around tuesday we'll get the results I guess... 

I found IP6, but I do not trust the website. I hope that I can find it somewhere in the Netherlands in a store.

http://www.youngagain.nl/catalog/index.php?cPath=2&osCsid=1c9978935ee0371651b3568b7872322f

I read somewhere that you find IP6 also in beans and brown rice. That is good to hear, because I LOVE beans (especially greens ones). But I dunno which kind of beans contain IP6.

Or http://www.vitaminstore.nl/Search.aspx?keywords=IP6

They also sell L-car. But I still can consider to buy that in the HEMA. 

An other question. Someone suggest to take ginseng....?

Owh, and does someone know what Q10 is???

Dore,

I believe you are asking about COQ10???

I don't know much but one thing i know about COQ10 is that it's also an antioxidant.

From http://www.puritansale.com/coenzyme-q-10-055?page=0&searchterm=COQ10&rdcnt=1

Coenzyme Q-10
Coenzyme Q-10 (widely known as Co Q-10) is an important nutritional factor that performs a variety of functions.** Co Q-10 appears in nearly every cell and is an essential component of the electron transfer chain, giving it antioxidant power to help fight the effects of cell damaging free radicals.** Coenzyme Q-10 is best known for its ability to support a healthy heart and cardiovascular system.** At a dose of 200 mg, Coenzyme Q-10 has been clinically shown to promote healthy heart function and to help maintain blood pressure levels already within normal range.** Co Q-10 also plays a role in converting food to energy within the body and may be important to cognitive and nervous system health.**

Zaini.

Please, forgive me that I do not post this in the vitamin area.

I went to the homoeopathy chemist. First I searched for a my own so I bouht also Lavender sacs for in the wandrobe and stood eye in eye with a book someone suggest and what was only €2. Anyway, when I bought it I told myself to ask it. The owner of the chemist told me this:

L-carnitine 20 or 50? tablets for €19.90
IP6:
choline/inositol. coliar 250/250 NO 505i  €12.60 (as I understand it well this was only inosotol.
inositol 500mg €13.40

That is the text on the paper. I let him right it, because I had no idea what he was talking about.
My text: choline/inositol = €13.40
Only inositol is cheaper= €12.60

He also told me that it was better to take them both. He started to talk about fat metobolism so I told him that it was for a life depend transfusion patient. I mean, I am very skinny and I dont want that people think i want to be more skinny.

We got one other hemoeopathy chemist which I planned to visit later this week. I dont know any shop in Amsterdam, but who knows I will searched there aswell.

Ah, I think I will only buy ip6, because two of them will be too expensive. I can not ask my parents. I am sorry to disappoint you all about that.

Groetjes, Dore

@ Zaini, I mean COQ10. Do you think it is relevant for a person like us?

Dore,

Yes i think Sharmin was planning on giving Little A COQ10,let her confirm it.

Dore i don't know what is the ratio between euro and dollar,( Netherland's currancy is euro right?) But have you checked www.puritansale.com ?

Zaini.

Hi Zaini,

I will have a look later. I have been ill since thursday. Friday and saturday have been the worst days. I am not sure what it caused, but I think it is ok to blame Exjade. At fri/sa I almost slept for 24hrs!

My hgb was low 4.9 or 8.2 and my next transfusion is at friday. I hope it will be improved. If not I have to ask my two bags at one time and hoping that i wont get so ill afterwards. Btw this friday was the first day that there were almost only blood transfusions. I met one men with thal (i think). I heard he used Exjade too, but I was to shy of I heard that good. All the other are chemo patients. 

Best wishes,

Dore
p.s. I wish you all a good sunday!

It is me again. There going talks here now that Exjade might be the cause of this. So tomorrow I am not allowed to take the meds and we have to see what will happen. That means me, because I will be home alone. I took it this morning and I start to become very short of breath. My parents left without mobil phones so all I could do was sit still and playing silly games at the pc. It reminds me of that autumn day in 2006 (desferal) and ofcourse I really hate this. Now It really hurts when I take a deep breath. I still have nausea and above all I feel weak.
My family will contact my doctor later at tuesday to discuss this. So please hope, pray, cross, knock on wood or whatever that Exjade is NOT the cause. I am starting to get more and more worried when I talk about this so I think I will turn the tv on to watch something silly or good 

Let it be a virus and let the pharmacy have good antibiotics

Take care all & I will post here so soon as possible the outcome of the conversation

Dore 
P.S. I have appt's at wed & fri in the hospital this week. Friday is blood transfusion, so i hope i wont be in pain this time.

Dore,

I hope that you feel better very soon.  I hope that your symptoms are not caused by exjade and that you can resume taking it soon. 

I am praying for you, please keep us posted. 

Best,

Sharmin

Dore, i am sorry to hear about your illness, but i hope that you will be better soon

Dore, how about examining vitamin and minerals deficency in your body, sometimes these symptoms are associated with certain deficinecies in the body. Knowing whether you are deficent in vitamin and minerals ( vitamin B, A, D, ....phosphrous, zinc,....) will definetly help you and the doctors make a good judgement about exjade, hope you get my point

manal

Dore,

Manal has got a point,you should for this, i don't know if you are taking any supplements,Please share what are you using.

I hope you won't have to stop exjade,but you can also lower your dose to 20 mg/kg instead of stopping it right away,if this is related with exjade the symptoms will lessen with the low dose if not go away,and if they not then they might not be exjade related,or may be then you can stop it for a day to check.

Best wishes,

Zaini.

Good morning,

I know what Manal is saying is right. The fact is that I can never explain this to the doc. I have not take my supplements for a few days btw. Only my child doc did check all my vitamins (yearly). I mean with all, all because it were 15 tubes sometimes 

As for the update:

My doctor said it is a very small chance that this is caused by Exjade. He told me to stop taking it now. I must retake it an hour after the start of the blood transfusion. If it comes back they will give me something against it. He thinks I am just ill. At the other side did he not talk about taking antibiotics...

I have had similar things with desferal, but the doc at that time did not want to give me those anti allergic stuff. Desferal plus L1 is for me more effective than Exjade, you see... I am probable the only person on earth who prefer Desferal infusions above Exjade cocktails! 

Do not ask me how, but tomorrow I must go the the hospital on my one and make it to the lecture about European Law too. (the theory is very difficult).  And thursday I must attend the lecture for homework otherwise I will lose the extra point.[Or you come once without homework, or you wont come but send the teacher the homework you made.]

It is like Puja said: Think Positive! 

Dore
p.s. i take tablets with calcium/vitD/zinc plus with vit D only, plus vit E (200IU),plus Vit B Complex and 5mg folic acid. C'est tout. But the last time I took them all was thursday night.

Dore,

You'll have to be regular with your supplements,and may i ask how much calcium,Vitamin D and zinc?,and why not magnesium?And i think you should increase your dose of Vitamin E to 400 IU daily.
Do you like tea? If yes please start taking it after meals,and if its green tea its more better,because green tea is a very good anti oxidant,plus it will inhibit iron absorption from meals.
And take turmeric or Curcumin with milk if you can,again turmeric is a very good anti oxidant,while milk will give you calcium.

Take care,

Zaini.

Owh yes, I do take magnesium too. I can not look for the contains of those tablets now, because I am supposed to learn. Yes, I love tea...but not when I feel ill. I do sometimes take green tea, but I prefer black tea, especially Earl Grey. I know that tea inhibit the iron absorption. I always try to take it after my meals. Btw do you know that milk does the same as tea? We have never milk in the fridge. We do have turkish yoghurt always, but only my mother takes it. Can you take tumeric with yoghurt?

Thank you

Dore,

Milk does not have the same function as tea,yogurt is also a good source of calcium,you can turmeric with anything,i don't know how much it is used if any,in European cooking,but we use it on daily basis in cooking.

Zaini.

Zaini, what Dore meant by'' milk has the same function as tea'' is that the calcium found in milk helps in preventing the absoarption of iron too

Dore you can put a small teaspoon of curcumin on youghurt or honey

manal

Manal does say what I tried to say. I got the information from the Cooking with less Iron book from the Iron Disorder Institute. I dont have the book, but someone gave me the information.
As for the cooking: The Dutch cookery use almost zero flavours (nutmeg, savory and ....chive? I dont like the first two). But we cook Italian food often and that has more flavours.  Btw one of the Dutch cheese is cummin cheese, but like I said before I dont like cummin. What can I say more?  I spend most of the weeks one day by K. family and my niece and I always make dinner that evening. My niece don't like potatoes so we often cook 'exotic'. We only help my uncle with cooking on thursday, because that is potato-day (and his free day).

The ontopic news: I am still a bit short of breathe so it still might be only a virus. (And I am still sleepy).

I will write the tips down before I forgot them.

 Have a good tuesday!!!