Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Ambareen on August 11, 2007, 10:36:32 AM
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Hi........ Im Ambareen from Dubai, i am Diabetic since a year now but i dont totally agree that you get diabetes coz of high ferritin level coz my ferritin has never gone higher than 1000 since i was a kid, since 2 years my ferritin level is between 400 and 500. In the earlier days of diabetes my highest sugar level used to be 200 but lately its 300 and above everyday even though i take insulin and herbal med regularly, my weight has gone down from 60 kgs to 47 kgs, i dont have any starchy or sugary stuff and i'm on a strict diet all the time, my excercise is my household work and now i have also been told that i have Hepatitis C. The doctors are not willing to start interferon coz im on steriods and say that my immune system is very low, also say that interferon doesnt always make a positive effect. So isnt it going to damage my liver if i dont start on interferon? Since its been a year now, and also got sever jundice twice. What should i do about it?
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Hi Ambareen
I am so sorry for you, but hope things will get better soon
Concerning interferon, what i know is that this medicine is meant to cure one version of hepatits C and there are 7 versions of this virus. I think that there are tests that can show which version the hepatits is, then you will be able to decide whether interferon suits your case or not.
Hope this helps
Manal
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HI Ambareen,
It's nice to hear from you. I hope I can find a way to pass through Dubai again and see you and your family. Your parents are such nice people and your mom always makes pudding for me. :food
There are some natural things you can try for both problems. First for diabetes you can try the supplement IP6 (phytic acid). It is part of the B vitamin family and is found in the bran of grains. It is sold cheaply as a supplement and is a natural iron chelator. Research has shown that it is also beneficial in diabetes and that it also is a liver cleanser, so it may be of some help with hepatitis too. You can also try the herb, milk thistle, which is known to be a liver purifier and also has been proven to help regenerate tissue in the liver. These are both natural supplements that are very helpful and also have almost no side effects. There are no known side effects of IP6, but you should take a zinc supplement with it just as with any chelator. Milk thistle's only known side effect is it can be a mild laxative in high doses.
Good luck and keep in touch. I hope I get to see you again soon. I love visiting Dubai. :biggrin
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Hi Andy,
While you are on that note can you tell me what you know about Hemoxideor Oxy.
Its a form of Nitric Oxide.
I would appreciate your input please.
Thank -you,
Kathy
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Nitric oxide causes blood vessels to expand thereby increasing the flow of blood through the body.
From http://www.nyas.org/ebriefreps/main.asp?intSubSectionID=2710
New research on a simple blood chemical called nitric oxide may shed light on how thalassemia causes PHT (pulmonary hypertension) and how to reverse these effects. Nitric oxide is a free radical that is produced by cells in the blood vessel walls. NO causes blood vessels to expand, easing the flow of blood...However, hemoglobin scavenges nitric oxide and inactivates it. Patients with thalassemia intermedia can have a lot of free hemoglobin in the blood, and this free hemoglobin destroys the nitric oxide. Without the nitric oxide, the blood vessel walls stiffen and narrow, limiting blood flow.
L-arginine is a precursor of nitric oxide. Taking dietary supplements of this amino acid may restore the flexibility of the blood vessels, allowing the vessels to better control blood pressure in the pulmonary arteries that supply the heart. Inhaled nitric oxide may be another treatment option that needs exploring.
Hemoxide contains L-arginine. There are claims that nitric oxide can also help diabetics by improving blood flow. This is one more supplement to consider. PHT is a killer of thals so this could be a very important field of research.
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Thanx a lot Manal and Andy i really appreciate your help, sorry for not mentioning about what type of Hepatitis virus i got, itz Hepatitis C
And Andy your always welcome at our place any time at all.
Thank you
Ambareen
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Hi Ambareen,
Have you had any liver biopsy or MRI to check your liver iron concentration? Any measurement besides ferritin readings?
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Hi Ambareen,
Has your hepatitis gotten worse since you switched from desferal to exjade? I found this bit of information and it made me wonder if your symptoms getting worse could be related to the change in chelators. Exjade may not have this property that desferal has exhibited.
From http://www.consumerhealth.org/articles/display.cfm?ID=19990303191838
Desferal has been shown in many conditions, especially Hepatitis C, to stimulate the natural interferon which helps the body suppress the virus.
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Hi...Andy
No i havent had any liver biopsy yet nor MRI, I've had hepatitius long before than i had started on Exjade and its been the same since than.
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Hi Ambareen,
The reason I asked is because serum ferritin levels are not always an accurate indicator of iron levels. An MRI or liver biopsy would provide a much more accurate reading of your iron levels in your organs. Diabetes in thals is usually related to iron concentrations in the pancreas and possibly in the pituitary gland.
I would suggest asking about MRI at Al Wasl and see if they might be interested in contacting Resonance Health about using the Ferriscan program for analyzing MRI's.
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hey hi
i hope u will be in ur good health just want to knw ru taking any medicine for ur hepatitis c i am really worried .................plz tel any suitable drug u knw which can conrol ALT N bilurbin
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No i havent started on any medications as yet, but i have been taking something called onion seeds which is known to be very beneficial making aour liver very stronge. And i think it really works coz my Bilrubin has come to a normal level since than.
Ambareen
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Hi Ambareen,
Can you tell us more about taking onion seeds? How are they taken, what is the dose and how often do you take them?
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Hi Askari,
The current medical approach to hepatitis C is to take a combination of two drugs, peg interferon and ribavirin. For some people, this puts hepatitis totally into remission. For some it does not work at all. It can be a harsh treatment for some as the side effects can be difficult to deal with. This was the case with Lisa, the founder of this group. The side effects were more than she could tolerate and she had to discontinue the treatment. However, there are others who have successfully gone through the treatment and are now back to normal.
There are some alternative treatments using herbs. Milk thistle is the most well known and many hepatitis patients have had success using the herb.
There is an article about hepatitis at http://www.thebody.com/content/treat/art2572.html
Some of the various natural treatments are mentioned.
Western herbs used as therapy for chronic HCV include milk thistle (silymarin), licorice root (glycyrrhizin), dandelion, and black walnut...Oriental herbs and herbal formulas used for chronic hepatitis include zhi zi (gardenia), da huang (rhubarb), long dan cho (gentian root), long dan xie gan tang, yin chen hao tang, and sho saiko to. Practitioners of Chinese medicine believe that herbal preparations can help detoxify the liver, reduce inflammation, and improve bile flow...Chinese methodologies such as herbs and acupuncture may be effective in relieving chronic hepatitis symptoms such as nausea and fatigue. Recent studies suggest that certain alternative therapies, including silymarin and vitamin E, can help lessen or delay the formation of scar tissue in the liver.
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hy hi
thnx ambreen n andy for ur replies .ambreen can u tel me more about onion seeds frm where u get themnhow u take them.
ANDY u mentioned milk thistle can uplz tel mehow much is taken nwat procedures r to be follewed n frm where u can get it
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Milk Thistle is a common herbal supplement. It can be found at vitamin and health food stores and from online vitamin companies. I don't know what's available in Pakistan. If you have trouble finding a store that sells vitamins and herbs you may be able to order online from somewhere in the Mideast, such as the UAE.
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.... can u tel me more about onion seeds frm where u get themnhow u take them....
Hi Askari and Ambreen,
I used to believe, that onion seeds were the very common spice with many medical benefits that is known in subcontinent as "Kalwanji کلونجی" but I've found out that they are not onion seed; they are seeds of a herb named "Nigella"
So, Ambreen can you clear my doubts about what you are using. Are you using Nigella seeds or the true onion seeds.
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Sajid,
I think you are most probably correct about this herb. Nigella is commonly called onion seed along with different names in every language. For a good description of the plant and a list of names in other languages, see http://www.uni-graz.at/~katzer/engl/Nige_sat.html and also http://www.theepicentre.com/Spices/nigella.html
As it turns out, the medicinal use of Nigella has been examined in several studies. These studies have shown that Nigella does offer some protection to liver damage.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=13680830&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus
The role of Nigella sativa L. (Ranunculaceae) (NS) and Urtica dioica L. was investigated (UD) in the prevention of carbon tetrachloride (CCl4) induced liver fibrosis and cirrhosis...NS seem to be significantly effective in the prevention of carbon tetrachloride induced hepatotoxicity in rats.
This is just one sample of the different studies but each study showed Nigella to have a protective effect on the liver.
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Onion seeds are other wise called as "Caraway seeds" or "Habbaesauda" in Arabic or "Kalwanji" in Urdu it is mostly used in snack called "Chakli" which is a common indian savery, Onion seeds are black in colour, which we made in a powder form, mix it with honey to make a smooth paste and store it in a jar and have a tsp of it every morning before or after food doesnt matter at all, You can have it once or twice a day doesnt matter the dose. And which is easily available in any store. :smiley
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Hi,
Onion seeds or nigella is ofcourse a very beneficial thing for every one,there is a saying of PROPHET MUHAMMAD (P.B.U.H) that "NIGELLA HAS THE CURE FOR EVERY DISEASE EXCEPT DEATH",so i am sure it must be helpful,
Wishing you health and joy Ambreen,
ZAINI.
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Hi Ambareen
Onion seeds are other wise called as "Caraway seeds" or "Habbaesauda" in Arabic or "Kalwanji" in Urdu it is mostly used in snack called "Chakli" which is a common indian savery, Onion seeds are black in colour,
I know these seeds quiet well, they are very good especially the oil is excellent for asthma as it was the only thing that had an excellent effect on my brother's asthma. The seeds are also known to increase the immunity of the body and strengthen the memory.
My concern is that i know that it contains iron, but i will check that and let you know
Take care
Manal
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Hi Manal,
Yes, they do have iron in them but i dont think its harmful to as it has lots and lots of good properties in them, If you are regular with your chelation than i dont think that a little bit of it would be of any harm, we can cope up with it, dont u think so?
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hy hi
wanted to tak to u online but i guess u got disconnected anyways thnx for telling about onion seeds u said u make them owder form mix it with honey then store it it jar.can we get this mixtutre ready made frm market too n r u using it for ur hepatitis n wat is the level of ur serum biluribin since u statred usnig it
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Hi Askari,
You can get honey and Kalwanji from any good general store. You can make a paste of it easily in your kitchen. There's no strict ratio involved just add the amount which you are most comfortable with as these seeds have pretty strong flavour and honey helps making them more palatable and providing benefits of it's own.
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thnx for ur reaply
will it help to dec the bilurubin level making liver strong
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Every study I could find on Nigella (black onion seeds) showed a protective effect on the liver. It is definitely worth trying. It has helped Ambareen and might also help anyone with liver problems.
I wish this information was available when my mother was still alive. Herbs like Nigella and milk thistle might have helped her survive. How ironic that when I was young and my family walked in the country fields, that we regularly picked milk thistle to dry and use as a decoration. No one knew of its medicinal uses.
Milk thistle pics.
(http://i71.photobucket.com/albums/i126/comicsetc/milkthistle.jpg)
(http://i71.photobucket.com/albums/i126/comicsetc/200px-Milk_thistle_flower.jpg)
(http://i71.photobucket.com/albums/i126/comicsetc/200px-Dadar3s1.jpg)