Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on August 21, 2007, 09:27:57 PM
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Andy,
I have noticed many of the benefits of IP6 in my son - the change in his skin color and the slow decrease in SF. He has also grown 1/2 to 1cm every 3 weeks - I don't know if this is related in anyway - but it has been correlated.
I am noticing that his hg is dropping a bit slower - he is higher after 3 weeks - this is mostly do to the timing of prednisone - but I am wondering if the IP6 may have an effect on regulating his overactive immune system - I say this b/c we are noticing less warm autoantibody activity since we began taking the IP6. Is this possible? If so I am tempted to bathe him in this stuff. :biggrin
(Just kidding currently he gets 2000mg a day).
Sharmin
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IP6 (phytic acid) has several important qualities that make it very attractive as a supplement for thalassemics, and frankly, for most other people. It inhibits cancer growth, is a strong antioxidant and enhances the immune system.
From http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12594974&dopt=AbstractPlus
Phytic acid or IP6 has been extensively studied in animals and is being promoted as an anti-cancer agent in health food stores. It is naturally found in legumes, wheat bran, and soy foods. It is believed to be the active ingredient that gives these substances their cancer fighting abilities. Proposed mechanisms of action include gene alteration, enhanced immunity, and anti-oxidant properties...There is a large body of animal evidence to show that phytic acid may have a role in both the prevention and treatment of many forms of cancer.
Yes, I do feel that IP6 can have a positive effect on the immune system. I think the antioxidant effect helps improve cellular health throughout the body. My only concern is that patients also make sure they are taking a zinc supplement, as IP6 like other chelators, does remove some zinc along with iron.
I also wonder if taking IP6 with meals would be the better procedure for thals, as it does inhibit iron absorption from foods.
I have highlighted the section about cancer because this may be of special significance to thals as they age. Cancer cells feed on iron. This does seem to imply that older thals who have had chronic iron overload may be more susceptible to some cancers because the iron is available to feed cancer growth. Keeping iron stores low and preventing the activity of cancer in cells can provide some protection against cancer and IP6 can help with this protection.
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Thanks Andy,
This helps a lot because I have been having difficulty timing the IP6 - because as per the directions I try to give it to him 1 hour before or 3 hours after meals - assuming that it would be less effective when taken with food. If it would be just as effective taken with food - if not more (since it interferes with iron absorbtion) I will begin giving it to him with his meals - that will be much easier!
I hope that it does help regulate his immune system - I know that supplements such as IP6 and green tea have a positive effect on asthma etc. (which is also an overactive immune issue).
I hope that everyone uses this supplement - just looking at my son's face each day makes me feel happy - seeing him glowing and radiant rather than ashy & orange - it makes me think of the benefit his other organs must be gaining from this supplement.
:hugfriend :hugfriend Thanks Andy
Sharmin
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Hi,
I wanted to share my experience too,on friday when my daughter went for transfusion after four weeks,she was on IP6,but she had taken it only for 3 days,and after four weeks her hb was 10.6, this is very unusual,because normally after four weeks her hb tends to be on 10 maximum,lower then that sometimes,so we always schedualed her transfusion on four weeks once and then three weeks,and so on,but this time doctor has asked us to come after four weeks again,i was just wondering that if it was due to IP6 or something else,anyways i am keeping my fingers crossed and will see what her hb is after 4 weeks.
ZAINI.
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Hi Zaini,
I just wanted to say - what a cute picture!
She is so sweet!
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Also, Zaini - have you noticed any change in her appearance yet?
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Sharmin & Zaini, I am so happy for your children and hope they will continue benefiting from the IP6 as much as they can :hugfriend :hugfriend
Andy, great information and as you said it should be considered by every one
Take care
Manal
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Thanx Manal,
For your wishes,we do need them,
Yes Sharmin,there is a great difference in her appearance,her skin colour is lighter then it used to be,the brownishness is gone,and after a few years i've seen a little bit of pinkish colour on her face,and it makes me really happy,i think IP6 has some cosmetic effect also :biggrin and i am thankful to GOD and to Andy for guiding us to whatever is best for our kids,and whatever you did was a huge favour,thanx a lot.
LOVE ALWAYS,
ZAINI.
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By the way, what would be the maximum dose of IP6 for a six and a half year old kid?weighing 25 kg, Zainab was taking one tablet daily since last ten days,now i think i should make it twice a day at least.
ZAINI.
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Andy,
The benefits of IP6 is evident from posts relating to Zaini and Sharmin, I read somewhere that IP6 should not be given to growing children, please shed some light on it. Also, if you agree than can we crush the capsule/tablet for IP6 so that it is easy to swallow for a four year old.
Sharmin,
If you could send us the IP6 brand name and name of the store in Canada.
Thanks.
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Hi Canadian Family,
I think I was supposed to get back to you on this a while back - sorry for the delay my husband orders it and I will get more information from him and send it to you very soon.
The brand we have is called Classic Series IP6 by Innovative Research and Scientific Integrity - 500mg.
Zaini - my son gets 4 of the 500mg caplets a day. I'm glad you are also seeing a difference in your daughter's skin color - it does bring out a pinky hue - and since the skin is an organ - it is an indication that iron is being removed from her organs.
Andy, I had not heard that you shouldn't use IP6 in growing children - could it be that it is not good fro non-thal children because of the iron chelation??
Have a great day my friends,
Sharmin :hugfriend
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If you check most supplements they have the standard warning that they shouldn't be used by anyone under age 18. This is a standard disclaimer to protect companies from lawsuits over supplements that have not been tested on children. Only the very basic supplements do not have this warning, the reason being, that most supplements have never been tested on children. I expect this is mainly due to the cost of testing.
With IP6 there is an added reason, and Sharmin has hit the nail on the head.
From Bill Sardi's report (Bill Sardi is responsible for so much of the notice that IP6 has received as an anti-cancer agent) at http://www.knowledgeofhealth.com/report.asp?story=The%20IP6%20Rice%20Bran%20Cleanse&catagory=Chelation,%20IP6
IP6 should not be used by growing children or pregnant women who have high iron and calcium needs...IP6 should be taken on an empty stomach so as not to interfere with mineral absorption from foods.
As I have stated before, IP6 chelates minerals just as all chelators do and supplements should already be used by thal patients and this has been recommended for many years. Zinc and calcium are universally recommended for thals along with folic acid and this should be followed whether IP6 is used or not. I have included the second section to illustrate why IP6 is probably better taken WITH meals by thal patients. Thals actually do want to prevent one specific mineral from being absorbed from foods, that mineral being iron and is why I have suggested that IP6 should be taken with the meal.
The standard recommended dosage for IP6 is 1000-2000 mg per day. This is when being used normally. As a chelator, a slightly higher dose may eventually be recommended. In lab studies, doses as high as 10,000 mg (10 grams) were used and NO side effects were found. Keep in mind that IP6 is a naturally occurring substance which is found in the bran of grains (one more reason to eat whole grains rather than refined grains) and also found in every cell in the body.
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IP6 capsules can easily be opened and mixed with food or liquids. It is water soluble so it is fairly easy to mix.
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Sharmin and Andy,
Thanks for the reply.
Regards
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Is This easly available in chemist.Is there any time frame that it should be taken empty stomach or something.
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What is the name of this medicne
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IP6 is not a medicine. It is a nutritional supplement and can be found in vitamin or health food stores and also can be mail ordered from vitamin companies. It is normally advised to take on an empty stomach because it helps stop minerals from being absorbed from food, but for thal patients I think it's best taken with meals because it helps prevent iron from being absorbed from food.
I order IP6 from this company. I believe they will ship to India but you might try to get it from a closer source if you can find it.
http://www.puritan.com/pages/file.asp?xs=BDF918F6B75C476B8E7E3F45B17C8B03&PID=602&CID=&CPID=1404
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Canadian Family,
You can order the supplement through
"FeelGreatSupplements.ca"<orders@feelgreat.ca and you can get information from
"FeelGreatSupplements.ca"<info@feelgreat.ca
They are located in Thornhill Ontario phone number 905-709-0918
Best of luck and let me know if I can be of further assistance to you in acquiring this supplement.
Sharmin
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Hi Andy,
Do you have any idea that what would be the shipping cost to India or Pakistan?
ZAINI.
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Hi,
I ordered from Blessed Nutrition for 2 bottles and it costed me following to India
$ 105.90 for Cell Forte Enzymatic Therapy IP6 Powder 14.6 oz Inositol Hexaphosphate
$ 22.60 for Shipping
It took 10 days to reach my house.
Indian Import Duty was Rs. 750
Regards
Mishra N K
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I went through the online ordering process and ordered a total of 12 bottles of 120 capsules (4 + 8 free). (I did not complete the order, of course). :wink
http://www.puritan.com/pages/file.asp?xs=AE445A8047F04E549E0C00AE1AD6B647&PID=602&CID=&CPID=1404
I used an address of Lahore, Pakistan and the total was $75.46. ($51.96 + $23.50 shipping).
I would suggest contacting the company through their online contact form and make sure they will ship to Pakistan or India.
http://www.puritan.com/house/feedback.asp?xs=AE445A8047F04E549E0C00AE1AD6B647
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hello & A-o-A
friends i read all the coments on IP6, and i am sure that it will aslo be available in pakistan and India
i belong to Pakistan,
if anyone know that what is the name of this supplement in Pakistan i will be thankful for this information
because my son is 4 year old i like to try IP6 with the recomdation of his consultant
waiting for ur valuable reply
thx
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Hi Andy,
Thanx for going through the online order process :) i did contact the company to know if they'll ship to Pakistan or not,this was the reply,
In reply to your recent inquiry we do ship to Pakistan. We ship US Airmail. This method of shipping can take up to 3 weeks for delivery. Additional time may need to be added for Customs as they sometimes hold packages. Shipping is based on the weight of the package before a flat rate of $3.95 is added. You may visit our website at www.puritan.com to get your total including your shipping. If there is anything further I could help you with just let me know. Have a great day.
so i think i'll have to order it once to confirm the charges,but right now i have 5 unopened jars of IP6,3 sent by shrmin ,and 3 sent by my cousin ,one of which Zainab is using,so i think i won't need it for a few months,Zainab is taking IP6 twice daily,i'll wait for about ten days more before making it thrice daily,and that would be enough dosage i guess?
Take care and thanx once again for your time.
ZAINI.
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A-o-A
i read the topic regarding IP6 will u pls tel me that, which company is markiting it and what is the name of this product in PAKISTAN
thx
Thanx Manal,
For your wishes,we do need them,
Yes Sharmin,there is a great difference in her appearance,her skin colour is lighter then it used to be,the brownishness is gone,and after a few years i've seen a little bit of pinkish colour on her face,and it makes me really happy,i think IP6 has some cosmetic effect also :biggrin and i am thankful to GOD and to Andy for guiding us to whatever is best for our kids,and whatever you did was a huge favour,thanx a lot.
LOVE ALWAYS,
ZAINI.
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Hello Mr. Mumtaz,
I was not able to find it here in Pakistan. It is not available here as vitamins and supplements other than the common ones are not used here in Pakistan. You can get IP6 from the U.S via Internet using a credit card or by some relative who lives there.
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Thanks for the information Sharmin,
I just bought a book on Inositol + Cal Mag IP6 by Dr. Kim Vanderlinden and Dr. Ivana Vucenik. The book is amazing and I will post any scripts interesting to our group.
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Canadian Family,
Thanks for the tip. I did a search and found that this book can be downloaded for free online. Go to
http://www.ip-6.net/secondpage.html and scroll down to the book "Too Good to be True" and click on the link. The book can be downloaded as a pdf file. Although the main focus is about cancer prevention (a subject I believe to be of important interest to aging thals) there is much information that may be applicable to thals. One passage I checked talks about something we have discussed here. Does IP6 pose a risk in terms of removing other minerals?
IP6 does not adversely affect the normal levels of minerals in our
body, as blamed by some nutritionist; on the contrary, it prevents
abnormal and pathological mineralization...Experiments have demonstrated that the absence of IP6 in rat’s food provoked the development of pathological calcification in the kidneys
[starting of stone formation] of rats that were prevented with
IP6 addition to diet. The development of calcifications was also
accompanied by anomalous calcium accumulation in rat kidneys
that was significantly reduced in rats fed on IP6-rich diet.
Iron overload is abnormal mineralization. More research needs to be done to look at the effect of IP6 on iron levels but we have seen in our members who are trying IP6 that there is a quick noticeable difference in skin color once IP6 is started, indicating lessening of iron deposits. Kidney stones can also be caused by abnormal mineralization and are a common problem in thals. Our own AD has had significant battles with kidney stones over the years and has told me some horror stories about stones he has passed. Lisa also had a constant battle with kidney stones.
IP6 has many apparent benefits that should interest thals. Check this book out if you have some time.
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Thank-you Andy, and to canadian Family .
For this info.I'm about to commence on Ip6 ,Ive ordered some on line and I'm waiting for delivery.
Its good news for me < I'm hoping it make a difference
Kathy
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Hello All,
IP6 molecule in its natural state is called inositol hexaphosphoric acid, the molecule has the capacity to chelate various minerals from the body including Calcium, Magnesium, Sodium, Iron. The IP6 (inositol hexaphosphoric acid) if taken in empty stomach would have a greater chelating effect. There are number of brands available in the market and you will hear names such as Cal Mg IP6, Iron IP6, Sodium IP6 etc. The difference is to provide a safer product, e.g. Cal Mg IP6 would have six molecules of calcium and Magnesium attached to a single molecule of IP6. The product would safely deliver enough calcium and magnesium with IP6 so as to compensate for calcium and magnesium chelated by IP6. Same applies to Iron IP6 or Sodium IP6 and so on and so forth.
The book states that great care should be taken when selecting the natural supplements as different conditions would have different requirements of natural supplements.
In various foods such as corn (highest concentration of upto 6.4%), beans, nuts, oats, rice, veal etc. the IP6 molecule is attached to a protein, the stomach would produce phytase to separate IP6 molecule from protein. However, during the process the IP6 is damaged and will be less effective. Pure IP6 on the other hand would be beneficial for its complete medicinal properties.
The following paragraph is just our thought and does not represent any medical advice.
Thalassemia population already susceptible to Osteoporosis and often encounter low calcium in their body are advised to take calcium enriched supplements. Keeping this thought in mind if IP6 is taken in its pure form may cause high risk of Osteoporosis due to chelating properties of IP6 on calcium. I am leaning more towards buying Cal Mg IP6 so as to compensate for calcium lost during the process and also benefit from the properties of IP6 at the same time. The author in the book mentioned that this product (Cal Mg IP6) would compensate Calcium 33 times of what has been chelated by IP6.
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Hi Canadian Family,
Your post was really informative, what you said makes sense,but the thing is my daughter is taking a calcium supplement along with IP6,nearly 500 mg of calcium daily,would that be enough?i'll order Cal Mag IP6 in future,but right now i have simple IP6,so i hope calcium supplement she is taking would cover for her chelated calcium.
Take care,
ZAINI.
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hello and A-o-A
i belong to Pakistan, will u pls guide me that in pakistan which company is marketing IP6, and what is the name of This food supplement in Pakistan
waiting for ur valuable replies
thx
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Hello Mr. Mumtaz,
Like I said before, I was not able to find it here in Pakistan. You can get IP6 from the U.S via Internet using a credit card or by some relative who lives there.
I have one called "(Enzymatic Therapy's) Cell Forte IP-6 & Inositol" It also contains Calcium, Magnesium and Phosphorus which will compensate the chelation by IP6 of these essential elements.
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Hi Zaini,
It seems like IP6 does not chelate great amount of essential elements from the normal body but thal population should be careful. I suggest if you can get an appointment from the nutritionist to discuss your question. Infact I am planning to make an appointment myself. If I found any useful information from the nutritionist I will share it with the group.
Regards
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After doing more reading on the topic of IP6, I would like to give the following revision about when and how to take it. IP6 has been shown to be measurably better absorbed when taken on an empty stomach. Also, it is more effective when taken along with inositol, which is a close relative of IP6 in the B complex family.
While no natural chelator has yet been shown to be a substitute for chelating drugs, they can be used to supplement the action of these drugs. In addition, natural chelators like IP6 and green tea extract, are powerful antioxidants and give protection to the cells that chelating drugs do not. They are also safe to use with chelating drugs. Long term use may have many benefits for thals.
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Hello Mr. Andy.
I just want to ask if I can give IP6 to Priya being a thal intermediate. If yes, then how much quantity I should give her.
Thanks & Best Regards
Dimple
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Anyone can take IP6. It may be of special value to intermedias as intermedias often have excess iron absorption from food and this can help reduce iron stores. I would suggest about 2000 mg daily, taken as 1000 mg twice daily on an empty stomach.
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..........green tea extract, are powerful antioxidants and give protection to the cells that chelating drugs do not. They are also safe to use with chelating drugs. Long term use may have many benefits for thals.
Andy, i have read that green tea extracts or drinking green tea daily increases the fat burning and you can lose up to 7 pounds in a year( recomended in diets ) if you have 3 cups everyday, so isn't this would be a problem for children as in thal it hardly difficult to gain weight
Manal
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Hi Manal,
There is an apparent paradox with green tea because it does burn fat but bodybuilders also use it. What must be kept in mind is that it burns fat and not muscle mass. The increase in metabolism can actually make the body more efficient in processing nutrients. Green tea has a host of good properties and it has been shown to increase endurance, which can only be good for thals. It is a strong antioxidant that actually repairs oxidative damage to cells. I think there are many benefits to taking the decaffeinated extract.
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Hi Andy,
I have a friend who's mom been through a lot, she was a victim of breast cancer,they did cheamotherapy ,and rite now she is out of danger, but today my friend was telling me that she is getting weaker and weaker day by day,loosing her energy,and she asked if IP6 would benefit her? i told her that i'll ask for advice from you,so what do you say, another thing which came to my mind was wheat grass, can she benefit from wheat grass as well?
ZAINI.
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Hi Zaini
I don’t know about IP6 but yes, wheatgrass juice will be very helpful to your friend's mom. Wheatgrass will help her to increase her energy level and definitely her HB.
with lots of Love
Dimple
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My wife takes IP6 and wheatgrass. She also went through chemo for breast cancer and the wheatgrass made a noticeable difference in her health during and after chemo. Her hematocrit stayed within the low normal range in spite of the chemo. IP6 has been shown to inhibit the action of iron in cancer cells and is highly recommended for cancer patients. Most of the research done on IP6 concerns cancer prevention. I think your friends mom can benefit from both.
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Thanx Dimple and Andy,
I'll forward her this information.
ZAINI.
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Andy,
I am sorry to hear about your wife, i hope she is doing fine now.wishing her health and joy.
ZAINI.
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Thanks Zaini. She was diagnosed in May, 2004, one month after Lisa passed away. It was a very difficult time for us. My wife is doing well now with no recurrence. She will be on chemo meds for years to come. My wife was treated at the same hospital that Lisa was treated at and the recliner chairs they use during chemo were purchased with the money Lisa's mom raises for thal patients.
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Hi Zaini
In one of the testimonials on carao, a lady on chemo had experienced a tremendous increase in energy after taking carao. She had also testified that her hb also did not drop much and hence she was able to avoid blood transfusions.
Regards
Maha
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Thanx Maha,
I'll forward this information.
ZAINI.
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HI EVERONE
i had started ip6 for my son. as after one blook tranfusion we had start ip6 , one capsule is 500 mg, to be little safer we are giving half capsule, about 250mg everyday in the morning empty stomach.
hope it benefits.
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Hi,
IP-6 is a safe herbal product extracted from rice bran. Even in very large doses it has no side effects. So you can safely give it to your son according to the dose Mr. Andy suggested.
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Hi all
I have just placed an order for IP-6 and now I read that you get it with cal & mag also. Hassan is not on any calcium or zinc supplement. Infact I had asked the hema if we needed to start him on calcium and he just said no. So if we start giving him IP-6 should we also start calcium mag zinc etc...
regards
maha
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Hi all,
This is the first time i've heard of IP6. And i tried to google it but i think it's not available in singapore? I can't seem to find it in pharmacies either. Kindly advise where and how i can purchase IP6? Thanks !! :)
Lilian
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Hi Lilian,
You can order IP6. Mr. Andy found a great site. Just put IP6 in their search box on the following site:
http://www.puritan.com/
This site has some great offers.
:ty Andy! :)
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Hi,
Thanks for the link :)
is INOSITOL HEXAPHOSPHATE the same as phytates??
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Yep,
It's also even called Pythic Acid.
Lot of names for one product. I wonder why won't they settle for one :huh
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Hi Sajid,
I have ordered IP6 on www.puritan.com .they gave me receipt number.What should i do next to track more information abt my order.
plz reply n take care...
Marziya
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I guess you have to wait till the time they told your order arrives at the address you provided.
I haven't used this site to order but some of the other members have. I request them and Andy to guide you track your order.
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Found this excellent topic while searching on Google, thought I'd add something and ask some questions as well.
My IP 6 capsules too arrived yesterday and I started taking it eagerly. 800 x 2 (with some calcium and additional magnesium), so 1600 mg/day 30 minutes before meals. I can't wait to see what IP 6 has to offer to me, especially being a diabetic due to thal major and one of the major benefit of it being listed is activating glucose metabolism. Plus, iron removal is directly related to potential cure in diabetes.
I've ordered it from seacoast, IP 6 gold by Dr Shamshudin (I might be mistaken with spelling the correct name).
Thalassemia population already susceptible to Osteoporosis and often encounter low calcium in their body are advised to take calcium enriched supplements. Keeping this thought in mind if IP6 is taken in its pure form may cause high risk of Osteoporosis due to chelating properties of IP6 on calcium. I am leaning more towards buying Cal Mg IP6 so as to compensate for calcium lost during the process and also benefit from the properties of IP6 at the same time. The author in the book mentioned that this product (Cal Mg IP6) would compensate Calcium 33 times of what has been chelated by IP6.
Is is true? Should I be very concerned? I take 800 mg calcium with 300 mg magnesium + 10mg zinc (Osteocare). So I hope I'm safe.
IP6 capsules can easily be opened and mixed with food or liquids. It is water soluble so it is fairly easy to mix.
Really? The capsules are big and however, ha ha due to recent throat infection and having phobia of swallowing tablets and capsules, it became little hard for me. Though I've been swallowing them. Would it make any difference with or without capsule and just taking the powder form? I'm concerned because most of the powder sometimes get's stuck in mouth such as teeth and such parts.
And I hope many people can make use of IP 6.
-P.
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Any replies Andy?
Also I read somewhere that in helps in marrow production, so IP 6 can also help somewhat in increase in Hb?
Also I want to add that I'm taking IP 6 now for 4 days and I'm feeling so active. Earlier I used to experience fatigue these days, but I'm so active all day long. I really trust this supplement from my soul and can already feel it's doing good.
I would recommend every thal major to try this and see the difference.
-P.
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Pratik,
Mineral depletion by IP6 is minimal if at all. You are talking cal/mag as you should. There is absolutely no reason for concern. My wife has taken IP6 for 8 years, as it is a cancer preventative. Her bones are fine. She had another scan earlier this year and all was well. It's truly an amazing antioxidant and iron chelator. Your body knows how to regulate the use of the substances it depends on, and IP6 is found everywhere in the human body. Trust your body to know how to regulate its own functions. There are many myths about various supplements that all depend logically on a body with no regulatory mechanisms. Bodies like that do not exist in the real world.
I don't know if IP6 affects Hb. but antioxidants do have a positive effect in terms of reducing the damage caused by hemolysis, which includes damage to red blood cells, so indirectly it could have an effect.
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Pratik,
Mineral depletion by IP6 is minimal if at all. You are talking cal/mag as you should. There is absolutely no reason for concern. My wife has taken IP6 for 8 years, as it is a cancer preventative. Her bones are fine. She had another scan earlier this year and all was well. It's truly an amazing antioxidant and iron chelator. Your body knows how to regulate the use of the substances it depends on, and IP6 is found everywhere in the human body. Trust your body to know how to regulate its own functions. There are many myths about various supplements that all depend logically on a body with no regulatory mechanisms. Bodies like that do not exist in the real world.
I don't know if IP6 affects Hb. but antioxidants do have a positive effect in terms of reducing the damage caused by hemolysis, which includes damage to red blood cells, so indirectly it could have an effect.
Thank you.
Also I'm feeling a lot active. Earlier, I used to get tired by 5 or 6 in the evening, even the whole day went with fatigue. But now, I feel the spirit inside me and am active all day long till I go to bed. It's definitely the good cause of IP 6.
Also it would be safe to say that I've started noticing some slight improvement to my sugar levels.
-P.
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Hi All,
Can IP6 be given to very young 1-2 years old thal major patients. what is the recommended dose for IP6.
Regards,
Himanshu
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Hi All,
Can IP6 be given to very young 1-2 years old thal major patients. what is the recommended dose for IP6.
Regards,
Himanshu
I guess I can safely say it's safe to give. In face that would be wonderful as your child will be getting it right from small age and would be as normal as any other child.
I take 2 tablets, but 1 tablet should do. It's in capsule form, so if she finds hard in swallowing, you can open the capsule and give it's powder or mix it with food as well. :)
-P.
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thx for the useful reply..
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I guess I can safely say it's safe to give. In face that would be wonderful as your child will be getting it right from small age and would be as normal as any other child.
I take 2 tablets, but 1 tablet should do. It's in capsule form, so if she finds hard in swallowing, you can open the capsule and give it's powder or mix it with food as well. :)
-P.
Dear Andy,
whats your view on administering IP6 to very young thal patients of the age 1-1 and 1/2 years.
regards,
Himanshu
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IP6 is mild. One capsule can be opened and mixed with food or drink and used for small children. Antioxidants are important for thals from birth, even before transfusions and iron loading begin.
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we had given 2 capsules of IP6 mixed with milk to our child when she was 6 monthe or 1 year old. At that time she was not on any chelator but was getting regular Tx. the first thing we had noticed was change in color on her face after few weeks. She seemed much fairer than before. We stopped IP6 after she went on regular chelator.
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we had given 2 capsules of IP6 mixed with milk to our child when she was 6 monthe or 1 year old. At that time she was not on any chelator but was getting regular Tx. the first thing we had noticed was change in color on her face after few weeks. She seemed much fairer than before. We stopped IP6 after she went on regular chelator.
This seems true. I'm starting to notice a little more fairness in me (although I'm fairer but regions such as hands or toes of legs weren't as bright as rest of the body) so it's definitely a good product.
I cannot just stop talking about IP6 to everyone including my parents. I now feel sporty all day long.
-P.
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Dear Andy,
I live in Karachi, Pakistan. My 3 year old son is suffering from a congenital disease diagnosed as Pure Red Cell Aplasia or Diamond Blackfan Anemia (DBA). In this disease the bone marrow is unable to produce red cells. Therefore, he is on regular blood transfusions, administered after every 4 weeks. The blood transfusions result in Iron Overloads and chelation is done by using Asunra. The disease has severely affected the body growth of my son and his weight is restricted to just 10 Kg. for the last almost a year now. After using Asunra for about 8-10 weeks; the SGPT level of Ayan was raised at an alarming rate due to which the chelation therapy was stopped. I was searching for an alternate, more useful and harmless (or less harmful) method of Iron Chelation; I came across with this information that IP6 is a natural iron chelator. I also searched and visited your website/blog and got very much useful information about use of IP6 in thals. I don't know whether IP6 would be as effective as in thals, bout I would definitely try it on my son after consulting with the Physician.
I would like to know about the dosage to start with (on body wt. of 10 Kg) and time (either empty stomach or with meals). I can use it as an iron chelator for my son; even on trial basis to see whether it can work for my son whose only hope to live is through regular blood transfusions and draining out overloaded iron through natural iron chelators like IP6.
I would also like to know about availability of the product in Pakistan or ordering it from Pakistan. I visited most of the sites you mentioned in your blog but in the Shipping Country drop down box on the ordering page of websites doesn't have Pakistan in their list.
I will be grateful if a prompt reply to my query is given. It would be better to reply me on my email arifdomki@hotmail.com
You may also post this on your blog for general comments from other members.
Thanking you in anticipation.
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He cannot stop taking chelation drugs. No natural chelator can do enough to eliminate the need for the drugs. IP6 and wheatgrass can both supplement chelation but can not replace it.
What was his dose of Asunra? And what is his Hb level before transfusion?
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As suggested by the Physician, Hb level is kept above 7; after every 4 weeks blood is transfused at Hb level of 7.3 or 7.4.
The dosage of Asunra was 2 Tabs. daily on empty stomach. The physician stopped Asunra and all other medication after SGPT level went above 900. It gradually came down to 57 but the physician has not yet asked to restart Asunra even the ferriten level is at 2500.
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The Hb is being kept much too low and will have a detrimental effect on growth. Hb should not be allowed to drop below 9. Your doctor needs to update his knowledge of the treatment of thalassemia.
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As I already mentioned, he is not thalassemia patient. He has been diagnosed with a very rare disease known as Diamond Blackfan Anemia which affects 1 in million children.
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Why is his Hb kept so low? It will cause poor growth and development.
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I don't know; it was doctors advice to keep Hb level above 7. I will ask him to keep Hb level above 8.0 atleast.
In fact, my son was scheduled to go through Bone Marrow Transplantation (BMT). I would like to share my bitter experience of deciding to go for the BMT of my son which is the only cure for such blood disorders as thals and the blood disease my son is suffering from.
BMT procedure was tried twice; once when my son was just 9 months old and the recent attempt was in last month (July 2014). Both attempts went wrong even in the initial stages of BMT. In first attempt the Hickman line was inserted on left side of the chest which was infected due to unknown reasons and after two weeks of insertion of the line it was decided to abort the procedure and Hickman line was removed after two weeks. The second time we went through a very traumatic situation. On the advice of doctor, we took the hard decision to make another attempt for BMT. Before BMT procedure, some blood tests took place. All tests were within their normal limits except SGPT and Ferriten (SGPT = 75 & Ferriten = 2500). There was tendency of SGPT level being raised with medication such as Asunra and Antibiotics. It went above 900 when we were using Asunra and some antibiotics whenever any infection occurred. I am not a doctor, even as a layman I had some apprehensions which I shared with the doctor. I asked doctor as the intense medication in the form of chemotherapy and other heavy doses of medication, which will be used in the BMT procedure, may cause liver problem. I told him that the SGPT level will certainly be raised with such intensive medication for a long time. But the doctor suggested to go with BMT, he told me that they will cope with the situation if such a scenario arises. I thought there might be some solution available with the doctors to keep SGPT level down during the BMT procedure. As soon as the initial protocol for BMT procedure started, the SGPT level went above 100. It reached 117 and the procedure was immediately stopped. The SGPT was monitored for few more days but it did not came down the level of 100. The doctor called me to meet him in his office. When I met him, he informed me about the problem and told me that under prevailing circumstances, if we go ahead with BMT procedure, there is possibility of developing VOD disease in which liver failure may occur and there are 75% chances that we may loose the child. I asked the doctor that you were aware of the fact that there are higher chances of rising level of SGPT while using intensive doses of chemotherapy etc. But the doctor had no answer to my questions.
After going through another failed attempt of BMT, the procedure was aborted after 12 days of admission at the hospital. I don't know why doctors don't care about the sentiments of parents who are already going through a very difficult situations to handle children who are suffering from life threatening diseases.
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I'm sorry to hear about your child's bad experience with BMT. There are many problems that can arise, and it isn't for every child. Parents should always be made fully aware of all courses of action, including sticking with a good transfusion/chelation program, which for the majority, is the right thing to do. Can you tell me where the BMT's took place?
I do think the Hb should be kept at least above 9 to ensure proper growth and development. It is not doing a child any favor keeping it below that level. Chelation can remove the iron, so the positives of higher Hb far outweigh the negative of iron absorption.
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The BMT has been taking place at Karachi, Pakistan. There are very few BMT facilities available in Pakistan and the hospital at which my child's BMT was taking place is one of the old hospitals providing BMT facility with most experienced team of Hematologists. More than 500 BMT procedures have so far taken place at this hospital with success percentage of 70 to 80%. Majority of patients treated at the hospital are thalessemia patients.
I will follow your suggestion to maintain Hb level of my child at optimum level.
Best regards.
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For Thal Minors with low or normal iron levels should they still take IP6?
If so what would be the benefits or the side effects?
For example if a Thal minor has low iron levels and they take IP6 would that make it worse (the iron levels drop further)?
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For Thal Minors with low or normal iron levels should they still take IP6?
If so what would be the benefits or the side effects?
For example if a Thal minor has low iron levels and they take IP6 would that make it worse (the iron levels drop further)?
Hi Andy,
Any comments/recommendations?
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Sofie,
IP6 will not cause low iron in those with normal iron levels. It does remove excess iron when present and also protects cells against the damage iron causes by inhibiting the action of iron in cells Its value for thal minors would be its antioxidant properties, but there are many antioxidants, like vitamin E, so IP6 is not specifically needed by minors.
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My Phytic recipe; I call it Phytic balls [Phytic laddu].
200 g sesame seeds +
150 g Brazil nuts +
100 g almonds +
30 g honey
Roast sesame seeds lightly, add Brazil nuts, add almonds, grind it until all sesame seeds gets shredded, don't grind it more otherwise oil will start to come out. Add Honey as binder and test improver. Make small balls by hand OR ball making tool. Serve two balls per meal one at the beginning one at the end. It can also be used as chocolate bar by drying it bellow 60 deg Celsius in an induction oven.
I am not sure if this will work :-\ but this will add to nutrition, my ip6 is on the way till then.
But I will do the chemical analysis of this food item and put the results here in few months.
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Jay,
it sound delicious and nutritious.
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Andy
Yep it tests so good, and delicious. Junior just loved it. nam nam nam uuhh....
Before recommending it to others as a source of ip6 let me mention that i chose these ingredients from Wikipedia (unless it is written by me everything on wiki is faith :winkblue :grin)
In fact i had a wild thought to patent it on behalf of all thals and have an all thal food making setup and supply it through post :)
But yes as i mentioned it early i will chase it into food and chemical analysis laboratory.
I forget to mention in previous post do not over heat OR use water as it may break down phytate.