Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: nice friend on September 06, 2008, 10:24:13 AM
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Hi :
here is all that i discussed to my doctor about my reports ...
My doctor was realy happy to see my reports … she said that you are looking good ..your reports r realy good ..i m glad to see your progress .. its nice to see that now your are taking care of your self on your own desires .. its good.. I still remember that time when you came here for the very first time … you are one the patients who I remember in both ways ( by name and by face bcoze u had a long tough struggle behind it) .. your looking changed completely ( well I was in traditional shalwaar kameez which I started to wear again after 5 years and it was 1st time I went to visit her clinic in shalwaar kameez ) …you started to care of your self n& now you will see more dramatic changes very soon …..
She re-administrated the dose of Ferriprox 8 tablets a doy instead of 9 … desferal 3 times in week to 2 times in a week … and ssaid that when your ferritin will reach to 1000 I will change your medicine to another … I said Mam you will start Asunra … she said yes …
Then I said that I want to ask some questions about some other medicine ..
As I said somewhere in my posts that she is a well known doctor and she also know about the herbal medicines as she once sugesst’s a herbal tea for me to cure from Cold & Cough … and that recipe of making herbal tea realy works superb to cure from cough & cold ….
She knew abt these medicines and gave me permission to start some and IP6 is one of them…..as it is made of rice bran that is also good in diabetes …
She told me to controle pre-dinner BSL ... soo 2 more units of insulin added in my morning dose..
Soo… it was the story of those 6 hours … it was a realy a suddenly programmed storming visit ….
Take care
Bye
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Umair,
That sounds like a great visit. I am glad to hear that you are doing well and that you are taking care of yourself.
I think that you will like Exjade, my son seems to be doing well on it so far.
Dr. Vichinsky was very encouraging about the use of IP6 he was confident that IP6 played a role in protecting my son from damage during the time that he had iron overload. He said that he is working on a study to regarding the effects of antioxidant (such as IP6) treatment in preventing iron related issues. IP6 and other antioxidants bind free iron and prevent it from causing oxidative damage in the body.
I think you are doing a great job Umair, keep it up!
Sharmin
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hi Sis :
yes, i m realy excited to hear that ,she is looking to start Exjade ... i m waiting for that time ... i will try my best to get my S.Ferritin, under 1000 before november .. i think its alot but it need a super attention .. i will try my best ... other thing i forgot to say that ... she told to my parents that ,"your son is now keeping his interest in his Health and treatment, and he is now understanding his condition as well as he is asking abt new medicines " ....
onething to add here .. that is a little change in treatment ....
for Liver & Hep-B she adviced Lamivudine Tablets for me ...
and reducing the dose of Spironolactone 100mg(half tablet) to 25mg
Lets see what happened ,, i hope that i will achieve my goal in my estimated time ....
Take Care
Umair
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Wishing you all the best for the future.
Your health is your own hands. You have to protect the gift of life.
Take care, Always!
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Thanx buddy ,
keep wishing like this ..
keep encouraging like this..
keep pushling me forward like this ..
thats is the key of my success
soo plz keep doing it ..
take care
umair
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HI buddies :
last time ,i forgot to mention onething , this is.
when i asked to my Dr about to take the Vit-C supllement durig chelation , first she told its OK you can then
she said : i think its not necessory as your ferritin is coming down without using this .. then she said : you may eat an Orange or drink lemo or orange juice ...
then suddenly she said, especialy try GUAVA ,tha can fullfill exact need of Vit-C dose, you can take( Guava can replace Vit-C suplement :think :dunno )...
i was a little disapointed :o :think about this decision to not to give my Vit-C , after i reached back to home , i decided to search on internet about rich Vit-C fruits and vegetables ....
Guavas, common, raw (1)
New Search
Refuse: 22% (Skin)
Scientific Name: Psidium guajava
NDB No: 09139 (Nutrient values and weights are for edible portion)
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Proximates unit Nutrient Units 1 X 1 fruit, without refuse 55g
Water g 44.44
Energy kcal 37
Energy kj 157
Protein g 1.40
Total lipid (fat) g 0.52
Ash g 0.76
Minerals
Calcium, Ca mg 10
Iron, Fe mg 0.14
Magnesium, Mg mg 12
Phosphorus, P mg 22
Potassium, K mg 229
Sodium, Na mg 1
Zinc, Zn mg 0.13
Copper, Cu mg 0.127
Manganese, Mn mg 0.083
Selenium, Se mcg 0.3
Vitamins
Vitamin C, total
ascorbic acid mg 125.6
Thiamin mg 0.037
Riboflavin mg 0.022
Niacin mg 0.596
Pantothenic acid mg 0.248
Vitamin B-6 mg 0.060
Folate, total mcg 27
Folic acid mcg 0
Folate, food mcg 27
Folate, DFE mcg_DFE 27
Choline, total mg 4.2
Vitamin A, IU IU 343
Vitamin A, RAE mcg_RAE 17
Vitamin E (alpha-tocopherol) mg 0.40
Vitamin E, added mg 0.00
Vitamin K (phylloquinone) mcg 1.4
Note : orange is on first place with 136mg of Vit-C total acorbic acid
soo .. Abstract is : Orange and Guava may fill daily need of Vit-C of a thal .. and may replace the Vit-C tablet from routine dose ....
What do you say Andy ?... your comments mean's alot for me ???... soo have your say to guide me please ....
For complete netrient report :
http://www.nal.usda.gov/fnic/foodcomp/search/ and then right guava in search field .. on next screen select Guava, commow, raw..... then press submit button .........
wat do u say , this info deserve to take place in this forum or its unwanted information so that, i have to delete this post ???.
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Umair,
Since thals can't take a lot of vitamin C it is fairly easy to get the daily requirement through diet and in fact, a fruit like guava is loaded with vitamins and minerals, so it adds a lot that you don't get from taking only vitamin C. My only suggestion is that on days when you don't get adequate C from your diet, do take a supplement. Vitamin C moves quickly through the body and needs to be replenished regularly, ideally every 12 hours, so you always need to make sure you have a source on a daily basis. If you make a point of eating C rich foods daily, you may not need to supplement at all. It is also best to eat the C fruits as snacks in between meals so it doesn't add to iron absorption from your meals.
By the way Umair, your doctor has been giving you some very good advice lately, so do listen to her. She is very happy to see someone work so hard to improve his health. :thumbsup
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If you are getting the required amount of a particular vitamin from a fruit then it is better to stick with it instead of taking that vitamin in pill form; because you will get other vitamins and nutrients from that fruit too.
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thank you buddies :
definately i will eat Guava as you sugested ... both you are soo helping and caring ... thank you for the response ...
@andy , there is a big role behind my succes to controle my ferritin .... you're a moral booster buddy ...thanx for the being around me throughout this summer to help me out of this dangerous ferritin level... you made me thinking about my self ... you teached ,how to make your own notes before visiting to doctor .. you helped me to find the fine suplements to ask about those suplements to my doctor.. otherwise it was completely impossible for me , to do this on my own .... thank you buddy for your uncoonditional support ...
@ sajid
thanx buddy for helping me and guiding me time to time .. and guiding me and helping me finding answers for my questions and concerns ... thank you buddy .... its not end here,you have to more suffer me ... hahahha i m not gona leave you buddies ... :D
best regards
Take care
Umair
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Hi nice friend
It is really nice to see that you are taking care of yourself. You should keep it up. You have a very caring doctor, you are a lucky guy.wish you the very best,
jade
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Hi Jade ;
thank you for the warm wishes ...
about my doctor , Yes , she is very caring and helping... i still remember the days when i was very ill, i was unable to even change my possition while sitting on bed ( even my senses were disabled )... when i first time visited her clinic , she wrote a TO BE ADMITED on my prescription and sent me immediately admitted to the hospital , it was late night 9;30 pm .. her routine was to went sttraight to her home after clinic but she came to visit hospital to see me and gave instreatment instruction again to all on duty doctors and told them to look forward carefuly. i went there as a normal person . i m still normal person nothing special in me ..
i wasn't soo special ( before that i wasnt her patient and she dont knew me before that ) .. it is her kindness and habbit to care for her patients ... after that she visited several times ... and it is becoze of her special attention that i m here and talking to you ... when i was not regular with the chelation and my ferritin was abt 13000 she told me several time " Son its not good , see from where you're coming to which situation you came out ... and now you're talking abt to give up .. take care of your self "
now everything seems O.K ... everything is smooth and fine .... and i m enjoying myself ... and teasing the other members of thalpal :grin .. :biggrin :biggrin :biggrin i want to assure you i will keep teasing you people hahahhahah .... i m not going to be a decent boy , here on thal pal .... thals now you have to suffer with thal and then suffer me as welll :biggrin ..... it was Just for laugh ( wat a bad joke it was :grin )
Best regards
take care
Umair
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of thalpal :grin .. :biggrin :biggrin :biggrin i want to assure you i will keep teasing you people hahahhahah .... i m not going to be a decent boy , here on thal pal .... thals now you have to suffer with thal and then suffer me as welll :biggrin ..... it was Just for laugh ( wat a bad joke it was :grin )
Best regards
take care
Umair
If you do this you won't be grant the prize of Higher Rank in Heaven or you risks
causing the feeble heart to stop :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl, funny
Kathy
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If you do this you won't be grant the prize of Higher Rank in Heaven or you risks
causing the feeble heart to stop
Hi kathy :
God made me thal ... you know why ??... its mean he gave me permision to do anything wrong in the world ...
and my balance of insane will remain zero .it is not gona increase ... i m forgiven person bcoze of my suffering :grin ..hahha soo be prepared to suffer to my posts ..
About a feeble heart . i just want to say that here is no one with a feeble heart (diseas :biggrin ). age doesn't matter your heart is young kathy , still young to fight against thalassemia , and onething , you are using internet and chating to other peoples around the world , i think its a medium of young generation ( to this point of view you dont have a feeble heart ) ...
all that i have mentioned above is to assure you that ... i m not gona stop my self to do that ,wat i mentioned in my last Post ... :biggrin :grin Be aware hahhha...
Best Regard
Take Care
umair
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14 November 2008
in my this vist, when i reached her clinic there was no patient in waiting room , and she was free, and was in an-other room of her Friend and classmate (mayb) doctor Dr.Yasmin Rashid , bcoze she was free at the moment ,soo when she came back to his room, i asked several questions to my doctor and took long time of her , as she was free , also keen to know wat i have to ask abt this time ... i asked her about Ferriscan as well , and she told me that , she met to the officials of ferriscan a couple of months ago , when they came to visit Pakistan , she told me that No single MRI Facility meet the requirements of that software which they have ( Ferriscan's Software ) .. i asked even Aga Khan as well ?? .. she replied "Yes , even Aga khan's MRi facility not meet's the requirement of that software " ..... wow is it not that great ???.. i hope that its solution wil come from Banglore, Inda ( The City of IT ) :grin , they will develop this software and minimize its requirements as they did with Exjade :grin ..... i m just kidding i dont to hurt or offed anyone plz take it lightly .... and ignore it if you dont like it.. i dont mean anything else, its a hope only , HOPE DIE'S IN THE END ( you may also read this quote like this " hope die's , aand the end " ) :grin...
anyways , we're talking abt my visit , many other topics of that visit has been discussed like, liver ,treatment plan , ferriprox and all ,... i asked her to sugest some new supplements for me bcoze its soo boring o take the same supplement for a long time , i want to change the tast :P :grin ... she said , to the 1st i left it on ur choice ,as i mentioned the vitamins and minerals and a few names of the supplements to which you may select one ... then i asked , soo may i change it on my own ???. yeah , you should there are many supplements there and then she prescripted few names and said you may take one of these Osnate or Chewcal (actuly i asked abt to change vit-D supplement)...... she said me that , why dont you try to make a group of thal of your city ??... ur progress is good u may convinve them for good care , i said i m doing and making non-thals & thal friends in my thal , i m convincing them to take care , i said the that , if they won't to take care of their selves ,then care of your selves for your parents ... then i asked her abt two of my friend (to whom i sugeest to have a visit of my doctor's clinic and the did that) , she said many patients come from my ciity and i know the few patients with the name u r asking abt .... then i asked several things i will update when i got remember those questions and answers ..
Umair
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23-january-2009
Hi buddies , here is an update on my visit .....
today i went to lahore to meet my doctor , she told me to contineu with Ferriprox and Desferal , she asked me how many desferals a week i m using for chelation ??... she prescripted me last time for 6 desferal a week .. 3+3= 6 .. .but i was using 12 in 10 days between transfusions .. and when she saw the results she prescripted me 12 again .... welll trying hard to get super fine results but back to back prbos are coming like hurdles ////.... like , my doc plans are for the treatment ,
first she wanted to clear the Hep-B and for that reason Zeffix weere prescripted for me , after that she want my Ferritin under 1000 soo we bcome able to star controling Hep-C ( Pegas Interferon ) , i showed my acceptence to start with interferon as well ( lets see i can bear with pain or not i will try my best to bear with it , or i think mayb she will change her treatment plan over this prob ) after clearing up Hep-C mayb then i will be able to star Asunra ,..... i cant predict wat will be her nex advice as she has prescripted some liver test , i think then she wll review her plan ... till then no worries .... i have 100% confidence on her treatment soo i m not gonna run away to the treatment she want to start .... i recieved my LFT reports i will let you know veery soon . ..tommorow is my TX date soo i m shorting up my reply .... i m still hope to get ride over the complications that i m facing , and i hope that i will INSH-ALLAH ( "If it is God's will" ) get ride over it all ...
My Doc Liked the OsteoCare and its formula , soo she gave me green signal to use osteocare ...
she prescripted me Surbex-T ( a water soluble multi-vitamins film coated pils ) but only when i start chelation with Pump ....
TAKE CAREs
Umair
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Thanks for the update Umair, it is important to know that you are on the right track, seems that you really have a good doctor :wink
Wish you luck and i am sure that in the very near future you will have no worries about any health conditions, good luck :hugfriend
manal
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Umair ,
Your doc really seem like a good one.
With Asunra,be very careful when you start because you already have problem in liver and Asunra can effect it badly.
Wish you the best.
Zaini.
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Umair, Zaini had addressed a very important note cause serious complications were found in patients using exjade/asunra who had previous heptic and renal complications.This should be discussed thoroughly with your doctor
manal
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Thank you Manal and Zaini for response ...
yeah , my doctor was talking about that , she told me to reduce Fe levels a little more so we can start treatment of Hep-C , so i think that she want my ferritin under conrole to start Hep-C treatment and then mayb she will think about Asunra , as she prescripted me to done HEp-B surface antigen test to examin my Hep-B's Condition , if it would bcome normal then she will start advise me to :catfight ( cope ) with Hep-C, she didn't gave any intiatvie to start asunra and also not talked about the ASunra , as i knew that my ferritin is high to the mark she gave me to start asunra , soo i felt that it is not good time to ask about asunra ... soo No progress for Asunra at the end .... she want's to cope with liver on First hand then anything else ...
something that is a little annoying is to start interferon , i heard that is too bad injection , as that is very painful , but i show's that i m ready to try that as well .. but onething that is to worry abt it someone tld me tha , during interferon's course at a ppoint ur Hg could drop to 1-2 , is it true ??
person who told me this said Hg could drop to "0" but i cant believe that 0 is impossible ... is interferon is something like Chemotherapy ???.....
anywayz, please share any kind of info if you know abt interferon or anyother medicine to cope wit Hep-C .... i I HOPE THAT YOU ALL WILLL B FINE AND IN GOOD HEALTH .....
Best REgards
Take Care
Umair
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HI Umair,
I n reading this posting I can't help feeling Proud of you.
You are strong keep it up.
Hope the HepC treatment is not too bad.
Take care you are doing well.
Kathy
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Info about inferon:
http://en.wikipedia.org/wiki/Interferon
Cancerdrug: http://www.cancerbackup.org.uk/Treatments/Biologicaltherapies/Interferon
Interferon society: http://www.isicr.org/
trustworthy? http://www.medicinenet.com/script/main/art.asp?articlekey=14529
google: http://aim.search.aol.com/search/search?s_it=topsearchbox.search&query=interferon+hemoglobin
We will be here to help you Umair. [One exam to go before i will be a lil back at msn]
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Umair,
I don't know anything about Interferon but I am slowly trying to learn so that we can support you through this treatment. We gotten through a lot together - we will get through this too. Please see below:
Anemia develops from abnormally low levels of red blood cells or hemoglobin.
A severely anemic person’s blood cannot carry enough oxygen to meet the needs
of the body tissues. As a result, over time the person becomes tired physically
and mentally. When on interferon and ribavirin treatment for hepatitis C, a
reduction in hemoglobin very commonly occurs and in most cases, is managed at
levels below the normal laboratory ranges, returning to normal after treatment is
completed or stopped. Anemia is an expected side effect of treatment with
interferon and ribavirin.
Please also see the following article:
http://www.cumc.columbia.edu/dept/gi/ribavirin.html
Sharmin
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Umair,
Please talk to some of our members like Smurfette and Poirot who have used interferon before making any decision. Inteferon is a very harsh therapy, but it does work for some people. For others, it does not help. Have you considered any herbal remedies that we have discussed previously. Milk thistle and Nigella (black onion seeds) both may help. See our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.msg8934#msg8934
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Umair,
Milk Thistle is available by The Vitamin Company,although i am not sure if this company is any good,and you can try Nigella ( kalonji) as it's very easily available.
Zaini.
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Hi All ,
@ Kathy ,
Thanx alot for encouragement and the wishes ... i hope that too , that i can deal with the pain :wink soo i want to give it a try ....
@ Dore ,
Thank you for the links , these link are realy usefulll. and Thanx alot fro being around to help me out . :thankyou2
@ Andy & Zaini ,
ffirst i would like to Say a Big :thankyou :ty to both of you , for helping , explaining and telling me abt various other treatments for Hep-C , Thank you alot .... in the light of your replies i decided that i have to talk to my Doctor About Nigella and Milk Thistle before starting the treatment with Peg InterFeron ( Peg interfero is the one which doesn't occur's Decrease in HG as i red in the link Sharmin sent ) .. i will let you know wat come's out of my discussion to my Doctor .... Again Thanx Alot for everything you people are doing , you all are very helping and helping me alot , your unconditional support is wat giving me hope to get back to ride over any prob .. :thankyou2 .....
Best Regards
Take Care
Umair
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Hi buddies ,
i want to mention something here .
Since i started chelation and joined this group , i asked several time to my doctor that , may i take Vit-C during aafter starting desferal , she always said "NO" . i asked again and again and again but her answer were always a big "NO" , i didn't understand why she were always saying "NO" .
in my Last Visit ( this on this friday ) she prescripted aTablet to me that has Vit-C , i was amazed to see that, when i was asking for Vit-C she awlays said "No" , and when i haven't asked for Vit-C this time then why my Doctor prescripted me, wat's the matter ???. .... then i realized something that is realy important to share with you people .... here it is :
My S.Fe was around and above than 3000 , thats mean i had alot of Iron in Blood stream . And Vit-C is used to mobilize the iron into blood stream as well . soo it could be dangerous for me at that staged to take Vit-C supplement .. At that time it could damage my heart as well by mobilizing and putting more iron into blood stream . And it would useless to take Vit-C at that time bcoze there were alot of iron already in my blood stream ... i think thats why when-ever i asked about Vit-C there Answer were the same (NO) during the past 7-8 months . And when my S.Ferritin is dropped down and came under 2500ng , She Allowed me to take Vit-C (when i was not asking for that ) .. its mean she " were looking to cope with Iron safely " .. yesterday i was talking to one of our member, who was previously on 12/6 and 2 vials a day and his previous S.Fe was 9000 . And now he is on 14/6 days a week with 3 vials His S.fe came 14,400...
His S.Fe is increasing instead of decreasing ... then i realized why my doctor said "NO" throughout the time ...
Note , when my result was 3630 , i tried Vit-C several times , and i felt pain i my chest so i decide's to not take vit-C .... and thats why i feel that its neccessory to share with all other thals ... i hope i m not miss guiding anyone .. i hope i make the sense .... wat do you say ??? please have your say bcoze it has been a great issue for me throughout the last 5 months .... i mean't to hurt or dis-grace anyone or to say that i m right & you were wrong ... i m just sharing my thoughts/view ..
Best Regards
Take Care
Umair
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Umair,
Your experience is very relevant and is something that should be investigated. Perhaps Sharmin can add this to her list for Dr Vichinsky.
Does vitamin C in low doses pose any danger to those with very high ferritin?
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Hi Andy & All,
i got to kow that Nigellla is widely available here in Paksitan and my City as well ... i found a Packet of Nigella Seeds in my Kitchen .... Thats great na ??... yeah its Sooper ..... now i have some question about how to use it and eat Nigella seeds As a Remedi for Liver N Hep-C .....
i have a few question here :
1) How to eat Nigella Seeds as for the treatment of Hep-C ( Liver ) ???.....
2) To wich thig it will b more effective to take Nigella Seeds with water, milk, Honey or nything else if you know..???
3) how it will be more effective to take please tell me in details how to take it with wat to ix it and any other procedure of taking Nigella Seeds ....
please if i missed to ask anything that you think , is important to know then mention that as welll ....
Best Regards
Take Care
Umair
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Umair, what i know is that the seeds are squeezed and you take their oil and this is how my brother used to take it for the asthma. I will search for this and let you know
manal
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What i do and what is mostly done is to just swallow a few seeds with water in the morning on empty stomach,i take them with warm water with a spoonful of honey in it.
Zaini.
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Zaini, it is the first time to know that we can swallow the raw seeds, are they hard to digest. I know too of people boiling the seeds then drinking the water.
manal
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Umair, i have found this site that have testimonies of how people take these seeds
http://www.healthymuslim.com/articles/tuepx-research-summaries-on-nigella-sativa-black-seed---part-1.cfm
I will keep searching and let you know
manal
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Manal,
You won't even notice them going down your throat,and no they are not hard to digest,at least i never noticed anything wrong.
Zaini.
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Thanks Zaini, that is good to know. I will start using it with my family too
manal
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Manal N Zaini ,
Thank you very much for gathering info abt it ... its very useful , i m gonna start it tommorow ..
i believe that it will work for me .... Thanx alot :thankyou2
Take Care
Umair
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:goodluck :goodluck :goodluck Bonne chance mon ami!!!
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:biggrin :biggrin i dont know wat you said Dore but ..... :thankyou2 :grin :grin
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Hi Umair
I hope you get relief from your hep. C with these seeds.
Dore was wishing you good luck.
Hi Dore
You speak french, i thought that in Netherlands, only english was spoken. It's nice to have someone speaking french around.
Take care
Jade
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Quote from http://www.rxlist.com/desferal-drug.htm (http://www.rxlist.com/desferal-drug.htm) regarding Vit-C with desferal
In patients with severe chronic iron overload, impairment of cardiac function has been reported following concomitant treatment with Desferal and high doses of vitamin C (more than 500 mg daily in adults). The cardiac dysfunction was reversible when vitamin C was discontinued. The following precautions should be taken when vitamin C and Desferal are to be used concomitantly:
* Vitamin C supplements should not be given to patients with cardiac failure.
* Start supplemental vitamin C only after an initial month of regular treatment with Desferal.
* Give vitamin C only if the patient is receiving Desferal regularly, ideally soon after setting up the infusion pump.
* Do not exceed a daily vitamin C dose of 200 mg in adults, given in divided doses.
* Clinical monitoring of cardiac function is advisable during such combined therapy.
sad that i find it out after i i've been taking Vit-C 250mg since my fe level came 9000
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Thanx Jade for Translation , :thankyou2
@ Tariq
Note , when my result was 3630 , i tried Vit-C several times , and i felt pain i my chest so i decide's to not take vit-C .... and thats why i feel that its neccessory to share with all other thals
at that time i used to take a 500mg tablet by dividing that into 4 pieces , i used to take 1 of those four pieces after starting chelation with Desferal ( with pump ) and other piece after the 12-14 hours to the first 1 piece ... its mean i used to take only two of four pieces in 24 hours ( dividend in two doses ) .... that means i took 250mg a day ... hope i cleared my point well ...
Tariq bro dont worry bcoze its mentioned in the info u quoted :
[bgcolor=#ffff00]The cardiac dysfunction was reversible when vitamin C was discontinued[/bgcolor]
take care and do ask to your doctor ...... about it ... or wait for a detailed response to other members ..... Wish you all the best with your treatment ....
Best Regards
Take Care
Umair
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Hi Umair
I hope you get relief from your hep. C with these seeds.
Dore was wishing you good luck.
Hi Dore
You speak french, i thought that in Netherlands, only english was spoken. It's nice to have someone speaking french around.
Take care
Jade
Yes, we speak only Dutch in the Netherlands and some do speak "Fries". I have had Dutch, English. German and French at high school. Currently I am learing Spanish and i know some italian. My Turkish friends tried to learn me Turkish, but I forgot the most of it. Saying something in foreign languages is a bit difficult. And after highschool I forgot most of my french. I really must read something in French to put it all again in my head ;) .
Where are you from Jade?
Maybe in the future we can speak french with each other :)
@Umair: How are you doing?
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Hi Dore ,
i m fine , my eyelash is swollen bcoze a piimple , so my i have to stay away from PC , but i cant stay away to this site soo i m here but for a short time and several times a day ... i m on chelation its my hour no 26 of chelation i did something wrog tonight with my medicine you can read that in another post ... with all these i m having knee ache to last week , but yesterday that was realy disturbing , left knee weren't allowed me to walk . but today it is okey ,,, i hope you r okiy ,..
Best Regards
Take Care
Umair
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Sorry to hear about all this Umair,i hope everything will be soon back to normal
manal
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Thanx Manal Sis .... :grin
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I hope you feel better very soon Umair.
Sharmin
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Thanx Sharmin Sis,
Umair
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Please take care Umair :hugfriend
Zaini.
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Thank you zaini sis for your concerns ... i will try my best too take care of my self ...
Umair
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Manal,
Can you tell me in details, how your brother used to take Nigella for his asthma ... i know a few of my cousins and otherrelatives who are patient of Asthma ... i willl be realy thankful of you .
Take Care
Umair
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Hi Umair
He used to take a small tea spoon of the nigella oil every morning ( But now in some sites i read that the oil should be taken mixed with something, honey for example, because taking it alone may cause some digestive discomfort)
Also he used to put one tea spoon of oil in boiling water then inhale the vapour.
Hope this helps :wink
manal
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Thank you Sis :) . i will share this to my Aunties, Thanx Alot
Best Regards for your Bro .
Take Care
Umair
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Manal,
Did this alleviate your brother's asthma symptoms?
Thank you for sharing this info,
Sharmin
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Sharmin
His Kind of asthma is the one that gets better when you pass puberty ( not totally disappear but gets better) At the time when he was using the nigella (when he was young and controlled by my mum, not anymore now that is why he stopped taking it cause he could not bear the taste) it used to reduce the frequency of his attacks ( he had severe ones that needed hospitalization) and the vapour helped him a lot.
Now being an adult, it is much much better than when he was young and he is on the ventolin inhaler only (which i don't believe is good but he is too relctuant to try any natural or any other treatment)
But to sum up, it helped him a lot in his childhood in terms of symptoms and frequency
manal
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Thank you Manal,
I am glad that your brother is doing better now. I would be nice if he continued to use the nigella but boys can be finicky - I have two younger brothers too.
Sharmin
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Manal ,
its good to hear that your bro is doing fine ... i believe too much on nigella , a few time my parents told me to not use i but i tries hard to convince them and fotunately i got succes in doing it .. Thanx GOD .... Alot of Best Wishe and Best Regards for your brother .. May God Bless him with the best of health and he never got attack of Asthma again ... AMEEN
Take Care
Umair
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Thank you so much Sharmin and Umair for your wishes :hugfriend
manal
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:urwelcome Manal Sis , :smiley :) :smiley
Umair
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visit at 04-April-2009
i went to Lahore to visit my doctor , and there was a wedding as well .. i wsn't willing to attend that bcoze i hd pain/ache in my ankle and my foot was swollen too much ... now a little detail wat happened in my last visit ( this one ) ...
i was setting my file, preparing my questions and while waitng for my turn , suddenly a voice touched my hearing and that was a my thal center friend ... i met him there and talked till my turn came and then i went In ... i talked about my reports to my Doc she said nothing but wasn't looking happy to see CBC and LFT but hte only S.fe report that was hsowing improvement in it ..
i asked her about the swelling on my ankle, she said , it seems bcoze of worm/insect bite's infection .. she told me to dip the infected foot in semi-warm water adding salt into it ... she said to star interferon Therapy and i resist a little bit , but she said i have both Hep-B & C infections soo she think it is neccesory ... as my Fe was a litle high than her desired level to start interferon therapy soo she said , it (S.fe) will take 1 month to come below 1000 and after that we will think of interferon ... i thanx GOD that i got another month to try milk thistle and Nigella seeds with Honey , i m taking milk thistle since 16-Feb ( a little gap 25-03 when i had malaria ) , but now i m regular with both ( nigela with honey and Milk thistle ) ... soo nothing is new in this visit .. but wat happened after this visit that i have mentioned in another thread (in, just wondering how is umair doing ) ... my ankle is not aching as it was a couple of days ago , but swelling is still preset all over ankle ... just hoping that it will vanish soon ... onething , she said to increase the dose of desferal to 4 vials, as my previous dose was 3 vial a day , i replied " Ma'am i have tried this dose and on this dose since Febraury-20 and never felt any side-effect or any reaction , so i think 5 vials will be fine as well :grin with a griny smile " she smiled and said
" Really she kept smiling and said that is proper dose for you i dont want to putt you on maximum dose , i want to keep you just behind the extreme levels of desferal dose , bcoze it can harm as well , she further said that i want to keep you on 90% of the dose that you can consume to stay in safe zone " ... ( my Weight is 41kg and according to 50mg/kg i can consume 2050mg , and maximum dose is 55mg/kg = 2255 ) ...
when i asked her Can i take 20-25 mg Zinc ????, i said i m taking Osteocare in which zinc is only 10mg should i take 1 Teaspoon of Zincat syrup ( 10mg zinc more zinc ) , she replied " you shouldn't regularly take zinc for long time in high doses , then i asked " if not regularly, then on alternate days " and she agreed ..
No New Medicine :( , i like to try new meds but this time no new medicine ...
Take Care
Umair
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If you take zinc you need to also take something with trace amounts of copper, as zinc alone can cause copper deficiency.
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Andy ,
does OsteoCare has Copper in it ??? ... which one osteocare i got there is nothing else listed on the pack of it but only Zinc, MAgnessium, Calcium and vit-D , and nothing else listed on it ...
but i red on site that ostecare tablet contains a few more minerals as well ???? :-\ ....
Umair
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Umair
Chewable Osteocare has these trace elements
Average per 2 tablets: Calcium 800mg (100%RDA)
Magnesium 300mg (100%RDA),
Zinc 10mg (67%RDA),
Copper 1mg,
Manganese 0.5mg,
Selenium 50ug,
Vitamin D (as D3 200IU) 5ug (100%RDA),
Boron 0.6mg
By the way Ahmad started the cheable ones two days ago but the problem is that the tablet is really very big
manal
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Manal,,
The problem is chewables aren't available here,and the ones that are available here does not mention any trace elements,only calcium,megnesium,zinc and vitamin D.Lil Z is taking no copper as well,and its hard to find any multivitamin with trace elements which does not contain any iron :dunno :(.
Zaini.
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Manal ,
The problem is chewables aren't available here,and the ones that are available here does not mention any trace elements,only calcium,megnesium,zinc and vitamin D.Lil Z is taking no copper as well,and its hard to find any multivitamin with trace elements which does not contain any iron
Zaini is :exactly right , But , if you see this link
http://www.vitabiotics.com/Osteocare/tablet_formula.aspx
Formula
Nutritional Information Average Per 2 Tablets % RDA
Calcium 800 mg 100
Magnesium 300 mg 100
Zinc 10 mg 67
Vitamin D 5 mcg 100
Manganese 0.5 mg --
Selenium 50 mcg --
Copper 1 mg --
Boron 0.6 mg 100
mg – milligram, mcg – microgram, RDA – Recommended Daily Allowance (EC)
it shows the trace minerals in Osteocare Tablets as welll , which are not mentioned on Osteocare Tablet's pack which is available here, i didn't understand is osteocare realy has those mineral mentioned on site and they forgot to mention on pack or osteocare which has being supplied to paksitan is not the same as mentioned on webiste ....
Take Care
Umair
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Yes Zaini, I know how frustrating this is :mad
What i know is that too much Zinic cause copper deficiency. Do you have copper alone ???
Umair
osteocare realy has those mineral mentioned on site and they forgot to mention on pack or osteocare which has being supplied to paksitan is not the same as mentioned on webiste ....
Yes this sometime happens to reduce the cost of the product. The kiddie pharmaton that is sold here is manufactured under lisence but it caught my attention that it does not have all the elements as the one from abroad and when i asked the pharmacy , they said that the reason for this is totally concerned with the cost and their ability to market it with a reasonable price
manal
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I am going to purchase 1mg supplement of copper for lil A until I switch to the chewables.
A nurse at the hospital told me that it is better to give calcium/magesium & other minerals in liquid form because they are better absorbed that way. Is this true?
Sharmin
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Sharmin,
Thanx for valuable information, does it mean's that we have to take Osteocare Liquid instead of Tablets ??/? even that is too short to RDA ( Recommended Daily Allowance) Values in all the vitamin & minerals that it has ( Calcium , zinc, magnessium and Vitamin-D ) ? ??...
Take Care
Umair
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Hi buddies ,
i want to mention something here .
Since i started chelation and joined this group , i asked several time to my doctor that , may i take Vit-C during aafter starting desferal , she always said "NO" . i asked again and again and again but her answer were always a big "NO" , i didn't understand why she were always saying "NO" .
in my Last Visit ( this on this friday ) she prescripted aTablet to me that has Vit-C , i was amazed to see that, when i was asking for Vit-C she awlays said "No" , and when i haven't asked for Vit-C this time then why my Doctor prescripted me, wat's the matter ???. .... then i realized something that is realy important to share with you people .... here it is :
My S.Fe was around and above than 3000 , thats mean i had alot of Iron in Blood stream . And Vit-C is used to mobilize the iron into blood stream as well . soo it could be dangerous for me at that staged to take Vit-C supplement .. At that time it could damage my heart as well by mobilizing and putting more iron into blood stream . And it would useless to take Vit-C at that time bcoze there were alot of iron already in my blood stream ... i think thats why when-ever i asked about Vit-C there Answer were the same (NO) during the past 7-8 months . And when my S.Ferritin is dropped down and came under 2500ng , She Allowed me to take Vit-C (when i was not asking for that ) .. its mean she " were looking to cope with Iron safely " .. yesterday i was talking to one of our member, who was previously on 12/6 and 2 vials a day and his previous S.Fe was 9000 . And now he is on 14/6 days a week with 3 vials His S.fe came 14,400...
His S.Fe is increasing instead of decreasing ... then i realized why my doctor said "NO" throughout the time ...
Note , when my result was 3630 , i tried Vit-C several times , and i felt pain i my chest so i decide's to not take vit-C .... and thats why i feel that its neccessory to share with all other thals ... i hope i m not miss guiding anyone .. i hope i make the sense .... wat do you say ??? please have your say bcoze it has been a great issue for me throughout the last 5 months .... i mean't to hurt or dis-grace anyone or to say that i m right & you were wrong ... i m just sharing my thoughts/view .
Best Regards
Take Care
Umair
Here's a piece of info to prove this :
Deferoxamine (Desferal)
Before receiving this medication
Use in the elderly—Caution when ascorbic acid used concurrently with deferoxamine; older patients more prone to cardiac decompensation with this regimen
[bgcolor=#ffffff]Other medications, especially ascorbic acid
Other medical problems, especially renal disease[/bgcolor]
Here's the link for complete article ....
http://www.drugs.com/mmx/deferoxamine-mesylate.html
======================================
I dont know why my doc is giving Vit-C to the start of his treatment for chelation and why she prescirpted me vit-C after a long time of chelation ( almost 8 months of chelation ) .... two different approaches toward one goal .... but i m still on my stance to not to take vit-C if your S.Fe is laready high .... i hope all of you would be agree to me ...
Best Regards
Take Care
Umair
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Hi All ,
iin my recent visit , i got a big relief , now i m on less desferal days .. only this one is a good news for today ... hummm... i will test hep-C test , according to this test we will decide if i need interferon therapy or not .. alot more prayers needed .. not only for BSLs but for Hep-C test results too ... a lil worried , i never been soo affraid of anything but Peg-interferon is sumthing really horrible thing in my view ...
umair
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Hey,
After a blood transfusion we drove home and had the radio on. Guess what they were talking about? Hep-c, but special treatment for drugs (heroine) addictives. That doesn't matter in this case, becausse I simple learnt how treatment for hep-c works.
I believe it is always hard, and probably more hard when you are anemic.
Since there is no other treatment (so far I know) would I look at it and say 'I gonna beat you both'. (That what I literally said to Exjade).
Don't be too worried and set you mind off and do something nice!!!
Dore
p.s. People for Pakistan: The magazine I read every week has an article about Pollywood.
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hummm,
Hep-C treatment is not only a hard treatment it is very complicated too , it mean's more anemia/hemolysis, more blood, more iron, more chelation, and alot more side-effects , and some are really horrible side effects ... i just got in near around safe range of Fe levels and thinking of going back to high levels and agressive chelation plan is the reason why i m affraid of this treatment ... and another reason is fast hemolysis in/bcoze of this treatment ... and after these all probleme in that treatment there's another thing which is causing me worried is Diabetes , i dont know if diabetes will do its impact on this treatment or not but these r the main reasons i m worried about ( i m not counting the other reasons, i m counting only my main concerns in this post) ... after that all , my father want to start ( if its necessory to start) this treatment under observation of my Doc , bcoze of he wpn't take any kind of risk , soo traveling out of city once a week in sick and weakness condition is looking more difficult .. but let's seee , wat's gonna happen more in my life , hahahaha , now a days life is looking like a boxing match ( as Ahmed (DJ) said) sumtime life punch's hard and sumtime me ..... okiey buddies take care ...
Take Care
Umair
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Out of topic ( its not story of my visit , its my recent test results ) :
Hep-C Virus condition is much better than last time... last time that was 268 and this time it is 68 Thanx GOD ...
Fe :
though i experienced the scenne wat been to me , late desferal's supply and no Desferal for 40 day and there Transfussions and then Ferriprox prob and delay in supply for 2-3 weeks After all these miss happs Thanx GOd my Fe report is almost fine 1299 ..
LFT :
alkaline phosphateese increased , bilirubin increased . direct bilirubin increased ...indirect bilirubin increased ... Gamma gt decreased , SGPT stable on 72 ....
Hep-B be surface anit-gen :
increased from around 3800 to around 4100 ...
HBA1c :
that is most worst report this time : 10.3 that mean's my average BSL for past 3months is around 250-275mgdl ( if m not wrong , plz correct me if i m wrong ) ( normal range 4.4 to 6.4 ) ....
i think its a quick n complete update thanx alot buddies for reading this all ... all i wana say is that Nigella + Honey is workinng fine in Hep-C's case .. u can see the change above ...
Take Care
Umair
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Umair,
These results look good - I am glad to hear it! I hope that the BSL results will be better next time too. You are doing an excellent job. I hope that you are eating regularly :)
Sharmin
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:) i m hpoing the same since a long time that things willbe on track soon ........ :) Thanx Sis ....
Umair
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Congrats Umair. Give it time and im sure we see à less naughty bsl.
I havent had Ex. For 5 weeks and forgot to ask my results. But this my second night with my Ex again. Anyway, i Hope you gave have such 5 week break too! I loved it :biggrin
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average daily BSL record of past 3 months around 250-275mg/dl is too high .. yeah but it will come down soon ( hoping that :) ) ..
Anyway, i Hope you gave have such 5 week break too! I loved it
didn't get it :grin :grin .....
Regards
Umair
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Umair,
Have you revised your meal schedule? This is one of the most important facets of controlling diabetes.
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Andy ,
yeah i've revised my schedule and it is like this now :
11;00AM ( it's the usual time when i take my first meal nothing bfore that only medicines like nigella , Aldectone , and Ferriprox ) ... soo 1st meal at 11:00AM i have cutted off the a few things to my 1st meal and reduced the meal size almost to half , after meal a mug of Tea ( bcoze i love drinking tea :P :coffee ... and then a small tea time at 05:30PM ( only a mug of Tea :grin ) and then Dinner at 09;30PM and after dinner a mug of Tea again :grin :P ... i have made a few changes to my insulin dose , increased and changed the ratio as well , its now :
morning Bfore 1st meal :
NPH 34 units , Regular 22
dinner :
NPH 28 , Regular 20
BSLs r fine now with this schedule, around 100-130 in morning and around 150-200 pr-dinner ..
Best Regards
Umair
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Shouldn't you eat something between meal #1 and #2? this may be a too big gap?
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yeah dore, nothing between meal 1 and 2 ... but when i was in murre( hill station ) i walked alot on the road of murre and u know my BSL struck very badly , iincreased my meal and that was not helping me bcoze my BSL went hypo many times in those days , mayb 3 times a day with my this routine i mentined above, so i aded a few more things to my scehdule and that helped me a lil bit but probleme wasn't adressed completely . i think the reason behind this hike of BSL i mentioned abve , is the less walk , i dont walk much here in my city and that is the main reason i think , in murree i walked alot and the result was more hypos with the same dose of insulin aand a lil increased diet as well ... so i increased my diet and addedd another meal in my routine when i was in murree to fix this prob :grin . my schedule was like this , in murree ... 10;00 am insulin and then breakfast (light) After that Tea... 04;00pm (light) lunch after that Tea .. and then 10;00pm dinner after that Tea .. bfore and after dinner walk more than a kilometer .... so , it wwas fine , i think there is nothing wrong with insulin dose and anything else only less walk and meal schedule is creating tthse hikes in BSL .. soo i think i have to pay a lil attention to those two things ....
Umair
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Umair,
You should be taking some snack in between breakfast and lunch. When using insulin, it is not advisable to have long gaps between eating.
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Andy ,
Yeah , i have lots of packas of cookies in my drawer to deal with hypos :P , tasty cookies :P ... when-ever i feel hypo it mean's, its time to take those cookies with a Cup of Tea :P ... and whenever i feel my energy level is going low i use that at that time as well ... but i need those cookiies very rarely when i m at home , and i got hyperglycemic at home... upto56 units in morning and 48 in evening mean's lots of insulin i would like to cutt off the dose of insulin instead of taking cookies if i get hypo again n again n again ..... :whew its really hard to cope with diabetes :whew
@ all thalz :
do controle ur Fe bfore it cause diabetes , i mean to say take controle ver Fe bfore Fe harm your pancreas and and u bfore getting diabetic .... A public service message from umair ...
Umair
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That is a great public service announcement, Umair. Stop the damage before it is too late and you find yourself trying to cope with diabetes.
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Andy,
That's exactly wat i wana say ,
Thanx alot for liking that message and explaining that message as well :) .... :thanyou2
Umair
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My fellow Pkd friend (the first I met in person) is now 14. She has diabetis. She can not even can bike 10 min to her highschool without getting a hypo. Her family brings and takes her always from school.
She is the one whodoesnt do chelation and gets rarely transfusions. Bcausr of that she lives on very low hgb. I had a nightmare on vacation. I dreamed about the big fear..
So I understand the walking problem.