Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Andy Battaglia on February 22, 2009, 08:28:34 PM
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I've been talking with Ambareen and learned that she has completely reversed the course of her hepatitis by using black onion seeds (cumin, nigella). She used one half teaspoon mixed with honey daily. Ambareen's hepatitis was looking very bad and the doctors wanted her to take interferon therapy, which can be very harsh and isn't even effective on many patients. More about Ambareen's battle with hepatitis can be seen at http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.msg8934#msg8934
I am very happy for my dear friend and wish her continued success. :biggrin
And I hope hepatitis patients pay attention. I believe that the best course of treatment for hepatitis can be found with herbal treatments like nigella and milk thistle.
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Andy,
I am so happy for your friend. This is very useful information for our other members who have to deal with hepatitis, I hope that they can also find effective therapy by using this treatment that is good for them rather than attempting a therapy that can cause them to get very sick.
I am so happy that you are better Ambareen, I wish you continued good health.
Sharmin
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I just got some more information from Ambareen. By using black onion seed, she has also raised her Hb and stopped using steroids to combat hemolysis. She has greatly extended the time between transfusions, so this is something that we need to look at for antibody problems. She also says she knows someone who was cured of thalassemia just by using black onion seed. She also updated me on a young man she told me about when I was in Dubai in 2006. This man had stopped transfusing and to this day he does not take blood. Apparently, camel's milk played a role in this. We have a previous discussion about camel's milk at http://www.thalassemiapatientsandfriends.com/index.php?topic=325.msg2277#msg2277 The role in immune system regulation by camel's milk also needs more investigation.
Sharmin, I will answer the question now. Yes, I would like to see little A try cumin seeds daily, to see if it has any effect on the autoantibody issue, and also if it affects his hemoglobin level in a positive way.
We get so dependent on doctors and meds that we forget that for the vast majority of history, only natural methods were used for illnesses. We need to re-discover the attributes of so many natural products to see how they apply to thalassemia. We are seeing that natural supplements play a big role in keeping patients healthy and I think we will also see how herbs also can play a large role.
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Thanx Andy ,
its a great news for me , i hope it will work in same maners for me as well .. . ...
@ ALL
please remember me in your prayers , i always need your prayers ..
Best Regards
Take Care
Umair
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Andy,
I am so happy fro Ambareen,why isn't she posting much,i would like to know exactly how she used them,whole or ground ? Please tell me if you know,Little Z can try it .
Nigella and Black cumin seeds are same?
Zaini.
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Andy,
Thank you very much for the information. I will get them as soon as possible.
I have the same question as Zaini, I understand that black onion seeds = nigella
are cumin seeds the same thing?
I would also like to know from Ambareen how I would give them to him and how much.
Thanks again Andy, I will let you know when I start. I truly appreciate the information.
Sharmin
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Umair previously posted about using this for his spleen. http://www.thalassemiapatientsandfriends.com/index.php?topic=1956.msg16369#msg16369
We can ask him if the seeds need to be ground first.
More about Nigella from our friends at Sloan Kettering. http://www.mskcc.org/mskcc/html/69141.cfm
Scientific Name
Nigella sativa
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Common Name
Black seeds, Black cumin, fennel flower, black caraway, nutmeg flower, Roman coriander, black onion seed, kalonji
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Clinical Summary
Nigella sativa is a flowering plant found throughout India, Arabia, and Europe. The seeds, commonly known as Black Seeds or Black Cumin, are used in cooking and in traditional medicine for inflammation, infection, and cancer. In vivo and in vitro studies show that constituents from Nigella sativa may have immunomodulatory (1) (2) (11), antioxidant (15), antiparasitic (13) and hepatoprotective effects (14). Some studies also suggest Nigella sativa has anticancer properties. The constituents of the seeds, including thymoquinone, reduced the growth and size of tumors in rats (4) (5) (6) (7) (8) (9). In another study, Nigella sativa oil, when injected, demonstrated a protective effect against tissue damage caused by radiation (15). Human studies for these indications are lacking. Other data indicate that nigellone, a component of Nigella sativa seed, might be useful in the treatment of diarrhea, asthma, and hypertension (5) (10). Nigella sativa may also relieve symptoms of allergic reactions(12), but allergic contact dermatitis associated with topical use was reported (19).
Adverse effects are rare. However, high doses of Nigella sativa oil caused liver and kidney damage in rats (7).
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Purported uses
# Antioxidant
# Anticarcinogenic
# Anti-inflammatory
# Asthma, bronchitis
# Rheumatism
# Hypertension
# Hepatoprotective
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Constituents
# Active Ingredients: Thymoquinine (TQ) (mainly in essential oil)
# Dithymoquinone (DTQ) (nigellone)
# Thymol (THY)
# Thymohydroquinone (THQ)
Other Components:
# Alpha-hederin, a triterpene saponin in the seeds
# Monosaccharides (glucose, rhamnose, xylose, arabinose)
# Unsaturated fatty acids (linoleic acid, oleic acids (in fixed oil)
(3) (17)
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Mechanism of Action
Thymoquinone, one of the chief constituents of Nigella sativa oil has antioxidant effects and restored the levels of lactate dehydrogenase, gluthathione, and SOD in animal models (6) (7) (9). This may explain Nigella sativa's hepatoprotective effects (3) (4). The antioxidant effect is thought to protect tissues from radiation injury (15). However, it is not clear if this would also make radiation therapy less effective. Thymoquinone administered to mice reduced the incidence of stomach tumors (7). Possible mechanisms include inhibition of DNA synthesis (7), and promotion of apoptosis by inhibiting cell growth in G1 phase (8). Studies have also shown that Nigella sativa oil has anti-inflammatory property by inhibiting cyclooxygenase and lipoxygenase (18). An in vitro study demonstrated that nigellone, a constituent of the crude extract of Nigella sativa seeds, inhibited histamine release from rat peritoneal mast cells (10) and may reduce allergy symptoms in humans (12). Nigella sativa decreased hypertension in rats possibly due to its diuretic effects (5). It was also shown to decrease uterine smooth muscle contractions (14).
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Adverse Reactions
# There is low level of toxicity (3).
# In animals, 10mL/kg of the fixed oil of Nigella sativa orally administered to rats for up to 12 weeks did not produce any significant changes in hepatic enzymes and did not cause mortality (16). However, high doses of 2g/kg or more caused damage to the liver and kidneys in rats (7).
# Topical use of pure oil of Nigella sativa caused allergic contact dermatitis in two people with maculopapular eczema (19).
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Herb-Drug Interactions
# Nigella sativa has antioxidant effects. In theory, it may interfere with the actions of certain chemotherapy drugs and radiation therapy.
# Nigella sativa may have additive hypotensive effect when used with other antihypertensive or diuretic drugs.
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Lab Interactions
In animal studies, Nigella sativa oil decreased serum glucose, triglyceride, cholesterol levels and leukocyte and platelet counts. But there was an increase in hematocrit and hemoglobin levels (16) (20).
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Andy,
Umair mentioned that he takes 1/2 tsp of seeds in 1 tbs of honey - in that case perhaps I can give little A 1/4 tsp seeds in 1/2 tbs of honey ??? He weighs between 27 - 28 kg.
I want to be sure of the dose because I don't want to risk toxicity.
Sharmin
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Ambareen is also taking half teaspoon, so one quarter would probably be good for a child. It's a fascinating herb that is commonly used in Asian cooking. I've noticed from what I know about Indian cooking is that many of the herbs and spices used have great therapeutic properties.
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This is indeed good news. I am very happy for Ambareen. Ambareen did mention earlier that she was grinding the seeds to a fine powder and then mixing it with honey. In the book, Prophets medicine it is stated that an average man can take upto 25mg of seeds per day. As for the camel milk, I will start it on Hassan ASAP.
maha
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Thank you Andy,
I will get this soon. When I read about the Camel's milk - I'll be honest my first thought was - 'Now where am I going to find a camel :dunno ?" :biggrin
Can it be purchased or ordered from somewhere?
Sharmin
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Thank you Andy,
I will get this soon. When I read about the Camel's milk - I'll be honest my first thought was - 'Now where am I going to find a camel :dunno ?" :biggrin
Can it be purchased or ordered from somewhere?
Sharmin
:heehee :heehee The same thought crossed my mind,although camels are avalable here,but where would i find their milk ?
I mostly use nigella seeds in cooking as i knew they are good for health,there is a Hadith by Prophet Muhammad (P.B.U.H) which means that "Nigella can cure anything except death",so keeping that in mind i kept using it in cooking,and now i am happy that i did this,and i also take it in the morning on empty stomach for weight loss,with honey in warm water.
I'll start it with Little Z immediately,as both things are already present in my kitchen :biggrin
Zaini.
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Sharmin,
You might consider Lactoferrin capsules, available from many companies. I would suggest looking for a product that also contains colostrum, as they both enhance the immune system.
I just spent some time reading about lactoferrin. It's a natural iron binding protein that is used by the body to help regulate how much iron is available. This is especially important in preventing viruses and bacteria from getting access to the iron that would make them flourish. One study I saw showed the value of lactoferrin in rheumatoid arthritis because it binds free iron found in the synovial fluid in joints. Lactoferrin sequesters iron, allowing it to be used only where needed in the body, while inhibiting the iron catalyzed production of hydroxyl radicals.
I read about lactoferrin until my head felt like a brick. I think we will return to this subject in the future.
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Thanks for the info Andy :ty
Colostrum is available at Puritan.
http://www.puritansale.com/pages/iq.asp?SearchText=colostrum&x=0&y=0
Zaini.
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Congratulations for Ambareen and i hope she continues to get better
This goes with the thread below
http://www.thalassemiapatientsandfriends.com/index.php?topic=2539.0;highlight=original+baraka
but unfortunatly this has been suppressed here by many big drug companies
manal
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Hi buddies ,
Sorry for coming back late in the scene , my Pc kept me busy , i was fixing the errors of it ....
@ Topic
yeah , i used to take Nigella sativa ( kalonji ) by mixing it with honey with the ratio of 1/2 teaspoon of Nigella Sativa and 1 tablespoon of honey for my spleen ... and i found it very helpfull to reduce the size of my spleen ....
i used to take it another way as well , my Father brought me empty capsule shells ( i dont remember the size/mg of them ) , i filed the capsule shells with nigela and swallow i capsule daily before break fast ( fasting before eating anything ) ...
Prophets medicine it is stated that an average man can take upto 25mg of seeds per day
its true and the best way to take Nigela sativa .. ( i think 11 nigela sativa seed's weight will the 25mg as welll )
this is wat cheif zakir told he read in book "Prophet Muhammad (P.B.U.H) medicines"
11 pieces ( Danay/seeds) of nigella sativa with a tablespoon , on each seed one time darood shareef ....
( remember , its only knowledge sharing , i m not gona force anybuddy to do the same , i m just telling wat i came accross while searching how to eat nigella seeds .. you may chose wat ever way you like to choose for you .... i have mentioned above 2 ways to take Nigella sativa those i have been tried and this is knowledge sharing and wat i m gonna try .... its nothing to which anybuddy can feel hurt or offended ... i hope that i will never hear any complaint like that ...)
http://www.islamawareness.net/Hospitals/kalonji.html writer forgot to write [RA] with the name of Sahaba [R.A] soo please keep this in mind while you are reading ...
Prophet Muhammad (Pbuh) mentioned its therapeutic efficacy and potential of cure.
Hazrat Abu Hurairah States - “I have heard from Rasool Allah (Pbuh) that there is cure for every disease in black seeds except death and black seeds are shooneez.”
Salim Bin Abdullah narrates with reference to his father Hazrat Abdullah Bin Omar that Rasool Allah (Pbuh) said, “Let fall these black seeds upon you, these contain cure for all diseases except death.”
The same narration is found in Sanad-e-Ahmed from Hazrat Aisha (t) and in Ibn-al-Jozi and Trimizi from Abu Huraira. Hazrat Buraida narrates that Prophet Muhammad (Pbuh) stated - “Shooneez is cure for all ailments except death.”
It is stated in the books of seerat that Nabi-e-Akram (Pbuh) himself used to take these seeds for therapeutic purpose but with the syrup of Honey.
Khalid Bin Saad states that he was travelling with Ghalib Bin Jabr, when fell ill during the journey. Ibn Abi Ateeq (nephew of Hazrat Aisha [RA] ) Came to meet us. On seeing the patient, he took 5 or 7 seeds of Kalonji and ground it, mixed it in olive oil and dropped in both nostrils, Hazrat Aisha told us that Prophet Muhammad (Pbuh) stated that there was cure in black seeds for all ailments except sam. I asked him, what was sam? he told “Death”. Ghalib Bin Jabr became healthy with that treatment. Observations of the scholars of Hadith reveal that shooneez is equally effective for the diseases due to heat and cold. Zahbi states that kalonji removes the obstruction of any part of the body, expels the gases and strengthens the stomach. It is Emmenagogue, Lactogogue and Diuretic. It is an Anti-Helminthic, if taken with vinegar. It is useful in chronic cold. Inhalation of its smell is useful in common cold. The oil of Kalonji is effective in Alopecia. Half tea-spoonful, if boiled in water and taken, is helpful in Asthma and diffuses the toxic effects of Bee and Wasps. Continuous use of kalonji is effective in mad dog biting. Fumigation of kalonji is useful in respiratory diseases. It is useful in paralysis, Facial Palsy, Migraine, Amnesia and Palpitation. It is also an expectorant and antipyretic. It mormalises the secretions of stomach and pancreas. This phenomenon is very much effective and significant in the treatment of Diabetes Mellitus. It expels the kidney and urinary bladder stones, if taken with the syrup of honey. It is effective in jaundice also if taken with milk. It’s powder if taken with water is effective in Haemorrhoids. If Kalonji seeds are boiled in vinegar and this solution is applied on Gums and Teeth, it removes the inflammation of the gums and relieves the pain also. It is also reported that its fine powder is effective if applied in early stages of cataract. Kalonji is also used in skin disorders. The oil of the seeds is also effective in earache.
Chemical Composition - seeds contain 1.5% volatile oil, while 37.5% Non volatile oil. In addition to this Albumen, Sugar, Organic acids, Glucoside Melanthin Metarbin and bitter substances are also found. The Glucoside is toxic in nature, hence the use of Kalonji in large doses and prolonged use might be harmful.
If it is taken with Qust Sheering after breakfast and Dinner, it is effective in chronic dysentery and Asthma. Qust Sheering is a good medicine for sexual debility, but if it is taken with Kalonji seeds and Habburrashad, it becomes more fortified. Modern upto date trials have proved that Kalonji seeds alone or in combination with other drugs are highly effective in Diabetes Mellitus, vitiligo and other skin ailments.
(* Director, Shah Faisal Institute of Hadith & Medical Sciences, Kasganj-207123 ,UP)
Black cumin was a vital ingredient in many Egyptian dishes. Physicians of the pharaohs used the seeds as a digestive aid after opulent feasts and as a remedy for colds, headaches, toothaches, infections, inflammatory disorders and allergies. Black seed oil has been a beauty secret of women since ancient times. Queen Nefertiti, praised for her exquisite complexion, was an avid user of black seed oil.
Pliny the Elder crushed black seeds, mixed them with vinegar and honey, and applied the paste to snake bites and scorpion stings.
Black cumin and its oil have been used to purge parasites and worms, detoxify, ameliorate amoebic dysentery, shigellosis, abscesses, old tumors, ulcers of the mouth and rhinitis. Recent research confirms these uses for humans, dogs, cats and horses.
Modern Research
More than 200 university studies conducted since 1959 attest to the effectiveness of traditional uses of black seed. The essential oil of N. sativa seeds is antimicrobial and successful in the ratification of intestinal worms. In vitro studies in Jordan and the United States have shown its volatile oil to be anti-leukemic. Other studies suggest this same active ingredient may serve as an immune-system booster and is proven effective in treating asthma and whooping cough.
Black seed is a complex substance of more than 100 compounds, some of which have not yet been identified or studied. A combination of fatty acids, volatile oils and trace elements are believed to contribute to its effectiveness. As for all the benefits packed into this tiny seed waiting to be discovered, ongoing research will have to judge.
English = Nigella, love-in-a-mist, fennel flower, black cumin, black caraway, black coriander, black seed English, Old (also in King James Version of the Bible) = Fitch
Finnish = Neidonkuka
French = Cheveux de venus, Nigelle or Faux cumin
German = Schwarzhuemmel, later protvurz or brotchrut
Greek, Ancient = Melánthion or meláspermom
Hebrew = Ketzah
Hindi and Urdu = Kalonji
Indian = Nutmeg flower
Italian = Nigela
Persian = Schonaiz
Sri Lankan = Kaladuru
http://sisters.islamway.com/modules.php?name=News&file=article&sid=279
Zahbi stated that it removes the obstruction of any part of the body, expels the gases and strengthens the stomach.
-It is emmenagogue, lactogogue and a diuretic.
-It is an anti-helminthic, if taken with vinegar and useful with chronic colds.
-Its inhalation is beneficial in the treatment of common colds.
-Its oil is effective with alopecia (hair loss).
-Half a teaspoon, if boiled in water, is helpful for asthma and alleviates the toxic effects of bee and wasp stings.
-Continuous use of the seeds is effective for mad dog bites.
-Paralysis, facial palsy, migraine, amnesia and palpitations are also ailments which benefit from it.
-It can also be used as an expectorant and antipyretic.
-It normalizes the secretions of the stomach and pancreas. This is very effective in the treatment of Diabetes Mellitus.
-It expels stones in the kidney and bladder if taken with honey.
-It is effective in jaundice when taken with milk.
-Its powder, when taken with water, is good for hemorrhoids.
-If black seeds are boiled in vinegar and then applied to the teeth and gums, it reduces inflammation and pain of the gums.
-It is also reported that its fine powder is effective if applied in the early stages of cataracts.
-Black seed is also used for skin disorders.
-The oil is also effective in earache.
i came across alot more information , i m gona send just after it , this session is over here....
Best Regards
Take Care
Umair
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Umair,
Thank you very much for the information, I really appreciate it. I will give him 1/4 tsp nigella with 1tbsp of honey on an empty stomach.
Sharmin
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:urwelcome Sharmin Sis ,, wish you BEst of luck , wish that Nigella Sativa will work for him as well ... :goodluck
http://www.themuslimwoman.com/herhealth/blackseeds.htm
The earliest written reference to black seed is found in the book of Isaiah in the Old Testament. Isaiah contrasts the reaping of black cumin with wheat: For the black cumin is not threshed with a threshing sledge, nor is a cart wheel rolled over the cumin, but the black cumin is beaten out with a stick, and the cumin with a rod. (Isaiah 28:25,27 NKJV). Easton's Bible Dictionary clarifies that the Hebrew word for black cumin, "ketsah," refers to "without doubt the Nigella sativa, a small annual of the order Ranunculaceae which grows wild in the Mediterranean countries, and is cultivated in Egypt and Syria for its seed."
some other heading of this article ,...
History of the Black Seed
Primary Properties of the Black Seed
How Does Black Seed Benefit?
How is Black Seed Used?
Is Black Seed Ayurveda Medicine?
Why is Black Seed Considered a Universal Remedy?
Are There Any Side Effects?
What Are Some Nutritional Components?
Has There Been Any Scientific Reserach Done?
Black Seed is Rich in Nutritional Values
Best Regards
Take Care
Umair
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I don't know if this was in one of the answers, but the question was do you grind the seeds before using? Please answer without a long quote.
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There is not much information about nigella! I have seen it once here, but I dont know where. I think it was from Patak (UK). They got stuff (probably so long as you do not know the real stuff)
Andy, do you mean we should sow themself? that would be great. In Spring I will reopen my vegetable garden :smileblue
writer forgot to write [RA] with the name of Sahaba [R.A] soo please keep this in mind while you are reading ...
What do you mean with that?
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I asked my mom about Nigella. It is called kalaunji in Punjabi. The weather is craaaaazzy here - so I will purchase some tomorrow and start him on it on Wednesday. I pray that it helps with the antibody issue.
Sharmin
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Dore, I didn't say anything about growing cumin. I doubt it would grow outdoors in Europe. What I did ask and can't seem to get an answer to, is do you grind the seeds before using them?
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Andy,
I called my grandma to ask her how the seeds are taken. She said that when used in pickles and cooking it is used whole. However, since it is to be mixed in honey for our purpose - she suggested that we grind it.
How have others taken it?
Sharmin
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i searched on yahoo and got some results which indicating that we can grind it ,i also think that it will be easy to digest if we grind it before taking it ,as far i remember my parents gave it that way ( grinded ) as well but i m not sure , soo i will ask in morning to my parents about that .. till then bubye
umair
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Thanks Umair,
I was leaning that way too. I think I will grind the seeds immediately before giving them to him, it should make them effective.
Sharmin
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Sharmin Sis,
Yeah, it is a good idea .... freshly grinded seed means No loss of anything from seed's properties ..
its a realy good idea ... :thankyou2
Best Regards
Take care
Umair
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Andy,
I have aloe vera as well, should I give him aloe vera at the same time as the honey and nigella?
Thanks,
Sharmin
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I think the only precaution with aloe is that it is a laxative, so if it does have this effect, the dose should be lowered.
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Hi,
I have been taking nigella seeds with out grinding whole my life,i just swallow them like a tablet.
Zaini.
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Dore, I didn't say anything about growing cumin. I doubt it would grow outdoors in Europe. What I did ask and can't seem to get an answer to, is do you grind the seeds before using them?
Sorry, it was a misunderstanding. I used the dictionary and know what it means.
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I have purchased the kalongi. I drove around to all of the health food stores in town - only to find it at an Indian shop 2min from my home. I will begin giving it to him tomorrow.
I also purchased First Milking Colostrum lozenges by Sequel. Each lozenge contains: 200mg of premium, first milking bovine colostrum. I was told that it has lactoferrin in it, however the bottle does not list it. Suggested use is one lozenge twice daily.
Does this sound right?
Little A will have his first dose of Nigella Sativa tomorrow morning. Please wish us luck!
Sharmin
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Sharmin,
According to the page at http://www.cocoonnutrition.org/catalog/page_colostrum_NL.php it does contain colostrum. Each lozenge also contains 50 mg vitamin C, so adjust his other dosage of C.
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Andy,
Does this mean that I should give it to him when he has desferal? Tonight is not a desferal night but I want to give him the lozenge because he is fighting the cold and I would like to give him an immunity boost.
Sharmin
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This is the info I found on the brand that I purchased - Sequel
First Milking Colostrum
Colostrum is truly nature’s perfect immune-enhancing and anti-aging superfood. Few natural supplements have as much medical research supporting its value as colostrum. There are literally thousands of published clinical and scientific research studies proving the health-benefiting properties of colostrum. Here are just a few of the documented benefits of colostrum:
Enhances overall immune system and helps boost natural resistance to illness and disease; Provides anti-viral, anti-bacterial and anti-fungal protection, creating unfavorable conditions for growth of numerous harmful microorganisms including those responsible for common health problems such as colds, influenza, diarrhea, ulcers, gum disease, and yeast infections; Regulates numerous auto-immune conditions including allergies, asthma, rheumatoid arthritis, lupus, multiple sclerosis, Alzheimer's disease; Improves state of chronic health problems such as diabetes, heart disease, colitis, irritable bowel, leaky gut syndrome, fibromyalgia, chronic fatigue, and HIV; Helps ward off and fight various types of cancer; Acts as an antioxidant to reduce the damaging effects of free radicals; Binds and transports iron in the body and is beneficial for iron-deficiency anemia; Heals digestive system and enhances nutrient absorption; Helps speed healing of wounds; Enhances lean muscle mass and increases metabolism of body fat. Sequel Natural's premium quality colostrum comes from the finest organic dairies in North America. To ensure maximum potency, Sequel only uses colostrum from the very first milking, collected within the first six hours after birth. Furthermore, their proprietary manufacturing process allows them to keep the colostrum’s naturally occurring fats fully intact to ensure the highest possible levels of age-defying growth factors. For additional information regarding Sequel Natural's First Milking Colostrum, go to http://www.sequelnaturals.com/sequelcolostrum.htm.
Hopefully together these two supplements - nigella sativa and colostrum - will help alleviate his antibody problem.
Sharmin
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Sharni,
It's only 50 mg of C with each lozenge. I don't think when he takes them is any concern, as long as his total C doesn't get too high. One thing to keep in mind with the 250 mg daily limit is that this limit was based on what is a safe guess. In studies, it was at doses of over 800 mg daily where patients had a measurable reduction in heart function due to the amount of free iron passing through their heart. I also believe that this is more of a danger to those who are seriously iron overloaded.
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Thanks Andy,
As he is not getting desferal tonight - he won't be taking anymore vitamin C. I will give him the lozenge today. His lips are still pink so I am hoping that his hg is decent. He has very distinctly strawberry colored red lips when his hg is high so I can easily tell when his hg is good. His lips turn very pale when his hg is low. So far he looks ok.....
I am excited about beginning these supplements. So far supplements have done more for us than meds.
He was running low on his vitamins so I also bought him more vitamin e (by natural source) 200IU. They had mixed tocopherals in the 400IU but I did not know if it was okay to give him that much.
The total zinc he was getting from his osteocare was 18mg so I bought some zinc tablets 10mg.
I am considering giving my daughter the Nigella as well because the pitting on her nails. I have been giving her all of her other supplements for months (Ostoecare, vitamin C, progressives,omega3) and nothing seems to have helped. Pitting can be unrelated to anything else and spontaneously disappear in young children or it can be associated with psoriasis. She has no other signs of psoriasis, her skin is clear and nice but I thought that giving her these supplements may help avoid autoimmune issues. I may even give her the colostrum. What are your thoughts Andy? She will be 7 in June and she weighs 40lb.
Thanks again for your help,
Sharmin
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Sharmin,
How long has your daughter been taking osteocare and is she also getting 18 mg zinc daily? Nail problems are often zinc related. Also, make sure her dietary vitamin A intake is sufficient. I do not recommend Vitamin A supplements unless a need is demonstrated. It is a vitamin that can cause problems in high doses so diet is a better source.
I know thal major in her 40's who takes 1000 IU vitamin E daily. She is small and I doubt little A weighs less than she. I would have no problem giving him 400 IU daily.
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Sharmin
Ahmad was prescribed vitamin E 400 mg alternating days but for now i just give it twice a week until i purchase a natural brand from abroad cause the only one from a natural source here is from wheat germ and it does not state whether iit has iron or not :huh :huh
As for your daughter, i think that it won't hurt giving her both the nigella (known to fight psoriasis too) and the colostrum. Actually i am doing the same for my daughter too, maybe it will help for her nose allergy and if not it is still good for her, that what i think
now the day is so crowded with supplements and the day is short. Lately i am giving the mutlivitamin, osteocare, l-carnitine and folic, one dose of carao all at the same time and i hope that is okay :huh. The rest of the day we have the other dose of carao, l-carnitine, aloe vera, osteocare again (i am thinking of getting the chewable because it is taken only once) and then the hydrea.
So where we are going to fit the nigella and colostrum,any way i will try to squeeze them but i am sure i will face a lot of stuggle especially with the nigella. i am sure we all have the same issue :wink
manal
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Manal,
Vitamin E is made from wheat germ oil. Although wheat germ is high in iron, the oil is not and at the most, only trace amounts are found in wheat germ oil. One cup of wheat germ oil contains 0% of your daily iron. Vitamin E should be taken with meals, as should most vitamins.
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Thanks Andy so much for this important information, i really had a problem finding a natural source. Now i will go and get it and will split the capsule as it is sold as 1000mg, thanks again
manal
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Andy,
I started giving her Osteocare, Progressives, vitamin C & omega 3 consistently beginning in October. She gets close to 18mg of zinc a day.
Once we finish the vitamin E I will get him on the 400IU mixed tocopherols.
I also bought a new brand of the B complex 50 - Prairie Naturals Super B-Force 50 with P5P & methylcobalamin.
This is supposed to be a superior form of B complex because it ensures that all of the vitamins are absorbed - that is why I am posting the ingredients.
Each cap contains:
vitamin B-1 (thiamine HCl) 50mg
vitamin B-2 (riboflavin) 50mg
vitamin B-3 (niacinamde) 50mg
vitiamin B5 (calcium-D-pantothenate) 50 mg
vitamin B6 (pyridoxine HCl) 45mg
vitamin B6 (pyridoxal-5-phosphate) 5mg
vitamin B-9 (folic acid) 1000mcg
vitamin B-12 (cyanocobalamin) 50mcg
vitamin B-12 (mehtycobalamin) 100mcg
Biotin 500mg
Choline (choline bitartrate) 20mg
Inositol 50mg
Para amino acid benzoic acid (PABA) 50mg
Sharmin
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I just wanted to add that after his ritux treatments this summer he was really down, he had low energy and he ran out of breath easily. These vitamins changed that 110% within weeks from the time that he started them.
Sharmin
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I gave him his first dose of nigella today - I didn't have anything to grind it with yet (I will get a coffee grinder). I crushed it a little (1/4tsp) into 1tbsp of honey and added a few drops of aloe vera. He took this mixture and went off to have his blood tested with his dad. I hope that the results are good. Today is 3 weeks post transfusion, he is scheduled for a transfusion on Friday.
His chest congestion, cough and stuffy nose was much worse today. Apparently, many of the teachers and students are very sick at school. His teacher has been sick for a month! They are trying to figure out what is going around at his school and I am quite concerned because Little A can't add this to his list of issues. Please pray for little A.
Sharmin
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Hi Sharmin,
This year we had really bad weather with lots of allergies. I know because Little Miss A never felt better this year. She is constantly fighting different issues since November 2008.
I hope Little Mr A gets well soon and rest assured you are doing a wonderful job. We ourselves worry too much but thats all of us "Parents'.
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Thank you for your encouragement Canadian Family :hugfriend It has been a tough year with constantly changing weather, viruses etc. I hope that our Little Miss A recovers completely very soon. Sending good wishes to our princess.
Little A's hemoglobin this morning is 100. Not bad considering that he has been sick. I am grateful that it is better than it was last time. Had he not gotten sick I suspect that it would have been higher.
Sharmin
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I also started Nigella with Little Z today,i didn't grind it,she swallowed it whole,and then took a teaspoon of honey over it.
I hope Little Mr A's hb will be fine,and i hope that Little Miss A will feel fine soon :) .
Zaini.
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Hi Zaini,
I hope that our kids have good luck with the Nigella. I think that they will. Little A's hg was 100 today. I am very grateful because he has been sick and we decided not to send him to school because he is quite miserable. Thank god for the advice on this site that Little A is doing well because antibody issues can really get out of hand and we have been really lucky to have a handle over them (at least for now).
Sharmin
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Sharmin, Canadian family
I wish a speedy recovery to Mr. A. and Miss A, wish that this will be the end of it.
Ask your doctor about the Broncho-vaxom tablets, they are supposed to give some sort of immunity towards chest infections, flu,..I am givng them to my son and hope they work well. It is a course of 10 capsules given in 10 days for 4 months. Next month, will be our fourth and last month
manal
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My son has been using 1/4 tsp nigella and colostrum for two weeks now. At almost two weeks post his hg is 118, which is pretty good considering that the effects of ritux are wearing off and his normal antibodies (antibodies he should have) are returning to their normal levels. After the drop he experiences a month ago I thought that the antibodies were creeping up quickly, but I think that the combination of having dna matched blood, and adding these new supplements seems to be helping him. I think that adding more vitamin D will help too.
Sharmin
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I forgot to mention that I started my daughter on colostrum 2 weeks ago too - today I started giving her nigella - I gave her less than 1/4 tsp and then I gave her honey and a touch of aloe vera. She does not have thal at all - but I have been concerned about her nails being dry and flaky so I hope that this helps her. I will let you know how she is doing.
My vitamin D levels were very low last year, little A's are low so perhaps my daughter's are low too - I should have them checked as well.
Sharmin
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My vitamin D levels were very low last year, little A's are low so perhaps my daughter's are low too - I should have them checked as well.
:huh :huh Some times its hard to keep track of everything,i have never checked my D levels,which i assume would be low :( .
Zaini.
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Hi Zaini,
I think that we are prone to vitamin D deficiency here because of the weather. Being of East Indian decent - we need to be in the sunlight a lot more to get the necessary vitamin D that we need - because the melanin in our skin blocks a lot of it.
I think that being in Pakistan you probably get a lot more sunlight than we do here. It is a good idea to get your levels checked anyway - just in case. I think that it would be good to make sure that little Z is not deficient because vitamin D deficiency makes people more prone to autoimmune problems.
Sharmin
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Hi All,
I'm new to this forum, just joined. I live in California, USA. I took a look at a few threads on this forum and then joined in. This one thread especially caught my interest! I can't believe I didn't know all this about the Nigella (black cumin seeds). I actually have Hep C and have enlarged spleen also. I would never want to undergo Splenectomy (I have not been told that I need it, but just a thought). I have been advised by hepatologist to consider starting on meds for Hep C treatment (injection). I get nervous when I hear about the side effects. I'm so thankful of knowing that people like Ambareen and Umair have been able to cure some of the complications I'm facing by just taking Nigella (Kalongi) wtih honey. Just in between reading these threads, I have already started on about 11 whole seeds of Nigella (as it's sitting in our kitchen already) with water, but 11 seeds were more like a 1/4th of a tsp. I took it about 40 mins ago, and I have been feeling some burning sensation ever since I took it. I wonder if that's normal?
I plan on making the mix as Ambareen did. I really hope to get rid of my HepC through usage of Nigella. I have never gotten a liver biopsy done on me. There are two methods of doing it (Intravenously through a vein in the neck directly going to liver, or through a special needle from the skin around the ribs). I have some extramodullary hematophoresis (external bone marrow bodies) and I was wondering which method would be safer (if it makes a difference at all)? I would especially appreciate Andy's comment on this. I have been recommended by both Hem and Hepatologist to get one for multiple reasons (to check on damage from HepC and measure of iron overload). I have gotten T2* done twice before and still biopsy is recommended to see if any damage is done to the liver tissue.
Is it okay to take Colostrum while taking Desferal? Does Colostrum Sharmin you bought also contains the natural ingredient that helps in removing the extra iron from the body? I don't take any Vit C (I drink orange juice, though) or any other supplements. Any suggestions to what's normally taken by all thal majors? and the brand name of more natural source of these vitamins & minerals would be appreciated.
I will continue to browse through but I think it'll take me forever to get through everything here. I'm so thankful to have found such forum. I have not been part of any forum before this, but this one really got my interest. Thanks everyone for posting really useful information and experiences here!
Regards,
SF
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Hello SF,
Good luck with nigella,there is one more thing which can help you in hep,its milk thistle,you may have heard about it.
There are so many supplements that can help in maintaining your over all health,Please check out Diet,nutrition and supplements section.
Zaini.
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1/2 tsp of seeds in 1 tbs of hone
tsp = teaspoon
tbs = ?
:dunno
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tbs = table spoon :smiley
if i am not wrong 1 tbs = approx 15ml of liquid
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Tariq, I always hear this but everytime i measure any table spoon, i find it only 10ml. :huh :huh
manal
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well thats what wiki says
http://en.wikipedia.org/wiki/Tablespoon (http://en.wikipedia.org/wiki/Tablespoon)
It so happens that tablespoons do come with different depths which hold more/less liquid based on their containing depth.
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Hi SF and welcome to our group,
Where are you being treated? California is home to two of the Comprehensive Care Centers (Oakland and LA), and the best care is available there. With that said, I am sure that even those doctors would recommend interferon/ribavrin treatment for hepatitis. However, I know far too many patients who have tried this treatment, only to find that the treatment's side effects were too harsh to continue (Lisa, our founder, was in this group who could not handle the side effects), or that the treatment flat out did not work (Poirot). On the other hand, I know many patients around the world that have kept hepatitis under control with natural methods, with milk thistle and nigella being the main herbs used in this treatment. Both are common herbs. Nigella is commonly used in cooking (I've been using nigella seeds in soup instead of various masala mixtures-yes, I am an American and use these spices...LOL...and no, I don't use nigella for its medicinal value...it just tastes really good!) Did your stomach quiet down? I can't see any reason it would make you feel a burning (acid?) feeling, as it is a commonly used spice. I would not recommend taking it on an empty stomach though, as most any herb is concentrated enough that it isn't something to take by itself. Did you mix it with honey? And a side note for people wanting to use nigella. Try it as a spice. You get both its medicinal value and it is a great spice. I am so glad to have learned about it, thanks to Ambareen. If you use it as a spice, you can skip taking it separately for that day, too.
Milk thistle has a long standing history of use in hepatitis. I know at least 3 Aussies who have used it to keep hepatitis in check and they have done well. Our member, Aston Dialo, uses it and his hep has been under control for years. It is an extremely mild herb with its only known side effect being that of a mild laxative, which for most iron overloaded people, is a blessing, as iron causes constipation. Milk thistle is easily available in the US from numerous vitamin and herb companies. I am biased towards Puritan because they have great quality products at very good prices. You can see milk thistle at this link. http://www.puritan.com/herbal-supplements-005/milk-thistle-250-mg-004548
Now, your doctors may scoff at herbal treatments, but I do actually know far more patients who have had success with the herbal route than who have succeeded using interferon and they also avoid the horrible side effects of interferon. I would give this a good try before doing anything else, imcluding an invasive liver biopsy. Yes biopsy is usually safe, but again I am biased, as a friend of mine was one of those who are that minimal one per cent statistic, where complications arose after a liver biopsy. His liver biopsy unleashed an embolism (blood clot) which killed him the next day. He was only 30. I know the risk is low and many patients have no pain (many do) but unless absolutely necessary, any invasive procedure should be avoided, as there is always a small risk.
Colostrum may have some promise as an immune system booster, which would be good as you battle hepatitis. It is safe to use with everything. It is the most natural food, as it comes from mother's milk.
There is a complicating factor with hepatitis in thalassemics and that is iron overload. Iron deposits decrease liver function, so when battling hepatitis, you must also battle iron overload. If your iron levels are high, you need to make a commitment to aggressive chelation. No herb or drug can work as well as it should if your liver does not function well, so removing iron has to be part of the battle. Our member dallaschick, who is also originally from Pakistan and now in Texas, slacked on chelation and found herself in the ICU with congestive heart failure. Using a combination of desferal and Exjade, she was able to reverse this and is now doing quite well. Although this is not officially approved, I do know a few people who have used this combination with no adverse affects, and with a good effect on lowering their iron levels. One other aspect of this is that even when iron levels are too high, you can offer your organs some protection by using antioxidants like IP6 and vitamin E. They do help to protect your cells from iron oxidation and the related damage. Sharmin's son is our poster boy for the positive effects of antioxidants and the use of these antioxidants in her son has been credited by none other than Oakland's Dr Eliot Vichinsky (in my opinion, THE top thal doctor in the world) as having protected her son even in the face of weekly transfusions brought on by an autoantibody issue.
Please continue to read through the appropriate threads on this site. There is much information that can help you lead a healthy life. Using natural methods to improve one's health is very important for thalassemics, as thals are deficient in almost all the major vitamins and minerals and do need to supplement to counter this. This isn't the same as it is for non-thals. As a non-thal I do feel that supplements greatly improve my health, but thals have serious deficiencies that cannot be corrected by diet alone. This is a fact. Dy Vichinsky is a leader in the research that has shown the importance of supplementation and has incorporated it as part of the comprehensive care guidelines that the comprehensive centers are supposed to be following. Some other vitamins to consider are vitamin D (maybe the most important of all) and magnesium. Magnesium is far more important than recognized and if you are taking calcium, you should also be taking both vitamin D and magnesium. Magnesium deficiency may be implicated in the development of gallstones and also lead to higher ALT results, which sometimes leads doctors to believe that hepatitis is at fault when in fact it is the gallbladder. Magnesium is needed for the walls of the red blood cells and deficiency may lead to their premature destruction.
If you are willing to make an ongoing commitment to chelation and supplements, I do believe you can avoid many problems associated with thal and also correct problems you already have. We are here to do what we can and frankly, we are proving to be far more helpful than most of the thal organizations on earth. Much of that may be due to my background in political science which has led me to avoid the many pitfalls that orgs encounter, as I learned early on, that formal organization attracts those who are obsessed with organization and rules and procedures, and to me, it's a pile. We forget that waste of time and just get down to the real matter of helping people who need help. It's what this group is all about and it is the true legacy that Lisa left us.
Please continue to ask every question that comes to mind.
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They probably use a spoon for big mouths :crazy
I have never measure the liquid of a spoon. We got breakfast and dinner spoons, but I am the only one who sometimes use the breakfast ones.
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Hi SF ,
Well , i think Andy have discused everything with details , but i want to say that , instead of liver biopsy, R2 ( Ferriscan Non-invasive liver iron measurement ) will be good and safe as well ... you are from california and there is a Ferriscan facility in Childrens Hospital Oakland ,.. wat do you say Andy ??? ...
Northern California Comprehensive Thalassemia Center
Children's Hospital Oakland
Department of Hematology/Oncology
747 52nd Street, Oakland, CA 94609
Phone: 510-428-3885 x 5427
Email: info@thalassemia.com
Best Regards and lots of good wishes for you SF ..
Take Care
Umair
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Hi Andy and everyone else,
Thank you all so much for replying so quickly to my posts! Andy, I get treated at Lucile Packard Children’s Hospital at Stanford. I have visited both Oakland Children’s and LA Children’s. I know of Dr. Vichinsky and his expertise in Thal and its research, but I have never gotten a pleasure of meeting him. I have been to CHLA once for EDICT study and OCH for SQUID, twice. So, I’ve had measurements made by both Squid and T2*. My first T2* (three years ago) was 11 (moderate risk) and now this year, it was 9 (high risk) in the heart (done at two different hospitals, though, first at CHLA and 2nd at LPCH @ Stanford). Liver iron has been higher than the heart but I don’t recall exact numbers.
I have actually never been to OCH for a comprehensive annual exam (as recommended by Cooley’s Anemia Foundation), which I have been wanting to get done for the last year or so now. The reason is that the Hematologist(s) at LPCH say(s) that Packard (LPCH) is part of comprehensive centers through Oakland. I still don’t believe so as we’re missing so much that OCH and LACH do as part of the COMPREHENSIVE exam. Yes, I do get regular screening done, but no doc looks at all results as whole. In my opinion, I have undergone too much irradiation, including x-rays, CT, DEXA, etc, in the last year or so without any benefit. So, I agree with you Andy.. I also don’t feel that even American docs know everything. The other major point to mention is that we don’t have many adults at LPCH as OCH does, so, docs at LPCH are still learning on us what the thal adult issues maybe, and believe me, thal kids’ and adults’ issues can be very different. I didn’t even feel much anemic or sick until I hit 23 or so. Perhaps that’s the reason, I have not been very aggressive with my care until like this year (25 yrs of age). I also wasn’t aware of HepC until like 3 years back and it took me some time to admit that I have it after different blood tests all confirmed it. It’s so sad to know that our treatment (blood transfusions) can also bring about many other complications and even unexpected Hepatitis. I actually work for Roche Diagnostics and am working with teams developing blood screening and viral quantitation assays. The more I learn about the processes the more nervous I feel sometimes, lol. Overall, definitely, screening has come a long ways.. it used to be not that sensitive even in the 80s and 90s, and that’s probably when I got infected, too. And like you mentioned, Andy, even a small chance is still a chance. But we really can’t escape transfusions.
And yes, unlike most Americans, I try not to take meds unless I have to. This is why I have been avoiding HepC treatment with interferon/ribavrin for almost a year now (especially cuz of depression and other nasty side effects it can cause and requirement of going into the clinic all that often to administer the drug). The other reason being Biopsy.. Hepatologist wants a baseline screening of fibrosis (if any) prior to starting the treatment. I also don’t like to undergo invasive procedures until there’s a solid reason to do so. Now, you can imagine how thankful and happy I would be having found what nigella and milk thistle can do for me. I do also believe in treating diseases with natural solutions (especially Islamically known treatments). So, my question is even if the titer for HepC in my blood was very high, I have a possibility of completely getting rid or it? Or these herbs would just manage or lower the viral load?
What I plan on doing is now that we already have a baseline viral load for HepC, I will continue on Nigella (which I already started on yesterday! – thanks to posts on this forum), and show the miracle of it to my docs by proving in bringing my viral load down, and perhaps just to prove further, also getting a biopsy after the course of nigella. How long you think it might take for this herb to work? Should I also start on Milk Thistle at the same time?
I actually did take Nigella seeds empty stomach, yesterday – and hence the burning sensation?? I took about 11 seeds, should I increase the number to half a tsp ground Nigella? I do plan on crushing the seeds to make a powder and mixing it with honey in a bottle the way Ambareen did. I think this will help get rid of burning sensation. I am just waiting to go get fresh Nigella (kalongi) and honey tomorrow or the day after.
Btw, I’m good at math and I love proving things ;) so, this may also be an interesting project for me ;)
Like I mentioned, I took some time reviewing the different threads before I joined the forum and the reason for me joining this group was that I found things other than what American docs have been telling me – the possible herbal treatments for some of the stuff I already face. I would definitely be happy if the herbs can do the trick for me and I don’t have to undergo nasty chemical drugs to get to the same or even better results. I especially won’t be able to deal with Interferon as I work full-time and whenever I think of receiving that treatment I also think that I would have to take 6 months out of my life to undergo this without the comfort of knowing that it’ll work for me, and I probably can’t afford to do that, mentally and socially. My Hepatologist already told me that I only have about 40-50% chance, at max, of these drugs working on me. I would also have to take two of the drugs together… not something I could imagine myself undergoing.
Does Colostrum come from Bovine’s first milk? I’m just wondering if it’s Halal (permissible in Islam)? I know a couple of Muslim thal friends on this forum are taking it so, I assume it would be halal…
I really hope I didn’t come out offensive to anyone, on this posting of mine. I’ve just been feeling a bit frustrated and am trying to figure things out for me. Also, like I mentioned in my earlier posts, I really don’t feel I had anyone to discuss these things with, before. I only go to the hospital to get my appointments done and actually get transfused on Saturdays and get out of there as soon as I can. I don’t know any thal major patients (especially adults) at my center. I have come to know a couple of beta thal patients at Oakland Children’s in the last 2 years (thanks to Laurice – thal patient and outreach coordinator at OCH) and have been very thankful for that. And that’s where I started discovering that there’s much more to the thal treatment and wellbeing than what I have known at LPCH (where mostly, thal kids are treated that don’t usually have many issues). I really hope I can make my way to OCH sometime this spring/summer, and this time, not for any research study but for a COMPREHENSIVE evaluation!! I do acknowledge and thank Allah that I have been blessed with so many good resources around me for my care, here in California, but now, I also pray that I will be able to take advantage of these resources, more effectively. I also have to admit that I have been kinda lazy and have been putting off some of the treatments up until this year (not that I have not been chelating at all. I have had intervals of good and poor chelation times). I am now marking the days I chelate on a calendar which is ACTUALLY helping me feel happy about days I have chelated and encourages me to do even more. It’s also a reminder of the days I have missed and have not gotten a check mark for ;) I have gone from 2, to 3, to 4, days a week of chelation now, in just 2-3 months. I plan on going to 5 times a week very soon. I actually used to have a port and PICC lines before and SubQ has always been very difficult for me to manage. I have tried Exjade, Andy, but have not liked it at all. I have not only experienced side effects but it also has not worked for me. My Ferritin went from about 4000 to 7800 during almost 6 months of being on Exjade (~25mg/kg – which is actually prettly good dosage). My hematologist does not agree with me on this… he still thinks Exjade worked on me or could work on me… this is one topic that totally frustrates me… I have so many numbers to prove that Exjade did not work on me (ferritin and T2*) and he still has been pushing me to go on it again. This is why now I’m going to finally (insha-Allah – God willingly) bring the ferritin down with Desferal to prove that I do DO Desferal and it WORKS!! Even though I have to be put up with the SubQ torture as I no longer have a central line… my Ferritin now is in 5-6000 range. Could you guys PLEASE help me stay on top of my chelation by periodically asking me my ferritin and days I’m chelating (I won’t lie to you =) I don’t like my docs asking me… ;)
Extremely sorry for this really long posting…. I just had to get it all out at once ;) So, now you know where I’m coming from..
Once again, thanks, and best regards,
SF
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Hi SF,
Yes, you can use milk thistle and nigella at the same time. Nigella is used as a spice and there are no restrictions and milk thistle is the mildest of herbs.
Have you ever use Ferriprox? It is the best chelator for removing heart iron and is available in the US after you jump through a few hoops. It has also been submitted for FDA approval so it probably won't be long before any doctor can prescribe it. In combination with desferal, you could make a major impact on your iron load.
As I mentioned in the other post, I do think you should talk to Eileen Scott about getting into either Oakland or LA for a comprehensive review. Cardiologist, Dr John Wood at LA Childrens would also be recommended. T2* of 9 does indicate a need for aggressive chelation and you really need to concentrate on chelation. In my opinion, you should not consider interferon at all until your iron load is under control. The drug does not work well in livers with a high iron load, so you may be able to use this to your advantage to put off any pressure to start interferon now. This mistake was made with Lisa and the interferon caused her terrible side effects while doing nothing to fight her hepatitis.
A quick search on the net shows many brands of colostrum that are halal and kosher. It is of bovine origin.
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You're awesome, Andy!!
Thank you so much for all the info!
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I love Dr. Wood, btw. He's very very knowledgable and actually caring doctor. I saw him when i was there about 3 yrs ago. I definitely wanna go to CHLA again, just cuz I know he'll be the cardiologist & radiologist I'll be seeing. He's also sensitive to patients needs and care. He actually conducted the hour and half long T2* MRI on me, by himself. Definitely the first doctor I felt very comfortable knowing is caring for me!
Just from what I hear, I think Dr. Vichinsky is the same way, but again, I have not had a chance to see him, yet.
I did find out, thru a note from CAF, about L1 currently going through FDA. I also know a couple of people on it (by itself or in a combo therapy) for some time now through a study at Oakland Children's. I know it has some severe side effects, and have heard that it may not work on everyone. I may still give it a try especially cuz it's not as new as Exjade and we do have much experimental and clinical data on its efficacy. One problem here (that I really probably should not point out on this blog, but I will anyway) is that I can't swallow pills. I have not been successful at doing so, yet. L1 is a huge pill. I wonder if L1/Ferriprox is or can be made available in liquid form? If not already in liquid form, can we crush it and how would it taste? I usually etiher find my meds in liq form or just crush tablets/pills and eat it on a spoon of water (despite the bad taste, usually). Another reason why I'm not on many supplements. Now, more and more stuff is coming out in chewable form here in the North Americas. Drug companies are finding this issue to be more and more common, i guess.
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Hi SF,
Good news for you,ferriprox is available in liquid form ,check this
http://www.ferriprox.com/
My daughter was on combination therapy of L1 and desferal for almost 4 years,and Alhumdulillah she never had any side effects,you just have to keep monitoring your blood counts.Its third month that we switched her to Asunra aka Exjade,and yes her ferritin is also increasing but not that high,and she has not reached maximum dose yet,which is 30 mg/kg,so i hope once she reaches it her ferritin will start going low,exjade sometimes takes a full year to show the improvement.
Take care,
Zaini.
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Hi SF,
i m on Combination therapy of Desferal and Ferriprox ( 9 Tablets Daily ) , and never had any side-effects, you can see the results of this combination therapy in this thread :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0
it realy work's very finely. and all you have to do is to monitore your Blood counts , for that purpose you have to Periodically done your CBC Test ( Complete Blood Count ) ...
Best of Luck for everything buddy , Take Good Care of your self ... and keep us updating .
Best Regard
Take Care
Umair
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I don't believe Ferriprox oral solution is available in the US yet. The tabs have only recently been submitted to the FDA and the oral won't be submitted until after the tabs are approved.
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Salaamz to all dear readers........
Im really sorry tht i haevnt been posting since a long time......
And about Nigella seedz it does amazing stuff to us... believe me it does, itz a miracle seed, if ppl knew abt it, it would haven been more expensive than diamondz, Natural med does take time to show the resultz but itz for sure that it workz, coz i have seen it in me, i was at a stage where my condition was so very bad n i have cum out of it and so can you all, insha Allah.. you all are alwayz in my prayers.
Dear Andy, Nigella seedz n cumin seedz are not the same, cumin seedz are called "kala jeera" which means black jeera that most ppl get confused with. Nigella seedz are also called "habbey sauda" or Habbey Baraka" or "Kalonji" or "Caravay seedz" or Onion seedz but not cumin seedz.
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Thank you kindly Ambareen,
I wish you the best of health. I have been giving my children Kalounji for almost 1 month now. I hope that his antibody issue is resolved as well.
Sharmin
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The best way to take Nigella seedz is by grinding them. and keep it in a bottle and a bottle of honey beside it on your dinning table or near you computer coz ppl never 4get to sit on the computer no matter wht happenz isnt it..!!! so tht you ever 4get it, and have it after every meal, for babies just a pinch of the powder mixed with honey on you palm n let the baby have it
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Thanks Ambareen,
My daughter is also taking Kalonji with honey.
Zaini.
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This is just an amazing piece of news ..... Ambareen, many, many thanks for highlighting the benefits that you have derived from using black onion seeds.
We use it occasionally in some of our curries (added flavour!) ..... but, I now do plan to start having it daily. We also use turmeric a lot in our curries - it is another very healthy spice for you - raw, overnight soaked, turmeric with honey is supposed to build up your immunity system, while having anti-oxidative properties, to boot.
Some more info on our friendly kalonji:
http://en.wikipedia.org/wiki/Nigella_sativa
Cheers
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:thankyou2 Ambreen ,
i have also started Kalounji 1/4Teaspoon with honey for Hep-C , i m hopeful for the same results ... Than you for a great piece of information about Kalounji and its benefits ... Thanx alot ...
Best Regards
Take Care
Umair
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Thanks Ambreen and i am happy it worked for you :hugfriend
Do we give half tea spoon of the nigella powder to adults and quarter to children???
manal
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For more information on nigella see http://www.theepicentre.com/Spices/nigella.html
Nigella
Nigella sativa
Fam: Ranunculaceae
Nigella has been used since antiquity by Asian herbalists and pharmacists and was used for culinary purposes by the Romans. The seeds are known to repel certain insects and can be used like moth balls. The name nigella derives from the Latin nigellus, or niger, meaning black.
Spice Description
Nigella seeds are small, matte-black grains with a rough surface and an oily white interior. They are roughly triangulate, 1 1/2 - 3 mm (1/16 to 1/8 in ) long. They are similar to onion seeds.
Bouquet: The seeds have little bouquet, though when they are rubbed they give off an aroma reminiscent of oregano.
Flavour: Slightly bitter and peppery with a crunchy texture.
Hotness Scale: 3
Preparation and Storage
The seeds may be used whole or ground and are usually fried or roasted before use The are easily crushed in a mortar and pestle.
Culinary Uses
Nigella is used in India and the Middle East as a spice and condiment and occasionally in Europe as both a pepper substitute and a spice. It is widely used in Indian cuisines, particularly in mildly braised lamb dishes such as korma. It is also added to vegetable and dhal dishes as well as in chutneys. The seeds are sprinkled on to naan bread before baking. Nigella is an ingredient of some garam masalas and is one of the five spices in panch phoran. In the Middle East nigella is added to bread dough.
Attributed Medicinal Properties
Nigella is used in Indian medicine as a carminative and stimulant and is used against indigestion and bowel complaints. In India it is used to induce post-natal uterine contraction and promote lactation. The seed yields a volatile oil containing melanthin, nigilline, damascene and tannin. Melanthin is toxic in large dosages and Niugelline is paralytic, so this spice must be used in moderation.
Plant Description and Cultivation
An herbaceous annual of the buttercup family, about 60 cm (2 ft) high. The gray--green leaves are wispy and threadlike. Flowers are have five petals bout 2.5 cm wide (1 in), white with blue veins and appearing between June and September. They yield a seed capsule with five compartments each topped by a spike. The compartments open when dried to disperse the seeds. Nigella is native to western Asia where it grows both wild and cultivated. India, Egypt and the Middle East also cultivate it.
Other Names
Black Caraway, Black Cumin, Black Seed, Damascena, Devil in-the-bush, Fennel flower, Melanthion, Nutmeg Flower, Roman Coriander, Wild Onion Seed
French: cheveux de Venus, nigell, poivrette
German: Scharzkummel (black caraway)
Italian: nigella
Spanish: neguilla
Indian: kala zeera (lit, ‘black cumin’), kalonji, krishnajiraka
Recipes using nigella
Nigella is used in Naan Bread and in Lobhia.
Nigella is an ingredient of panch phoron, found in our Indian Spice Collection.
Bibliographic References and Further Reading
Illustrations by Barbara McGee, exclusively for the Epicentre. © 2003. All rights reserved.
This is a spice that is easily used in many dishes and adds a mild flavor that I find delicious. There are many herbs and spices used in Asian cooking that have very good medicinal properties. Creating foods that are both flavorful and good for your health is a good way to ingest these herbs without feeling like you're taking another medicine.
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Thank you Andy,
I am very glad that I am giving nigella to the kids.
Sharmin
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Do check the following link. It tells you how to use the black seeds and oil for different ailments.
www.positive-action.net/blackseed/health%20benefits.htm
take care
maha
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Maha,
Thanx for the link , i was desprately looking for a link like this one .. Thanx alot ... its realy a comprehensive web's link .. Five Stars ***** ... :thankyou2
Best Regards
Take Care
Umair
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Thank you so much Maha :hugfriend
manal
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You are most welcome Umair and Manal :hugfriend. I have resumed giving Hassan 1tsp of black seed oil with 2tsp of honey and this time without aloevera. In the beginning we were very surprised as to why a hemato-oncologist ask anyone to give a herbal preparation, but I just found out that he is a nutritionist as well.
maha
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Hotness Scale: 3
AOA Maha,
i think 1tsp is too much for your little one , as this herb considered as hot herb and i heard that it should be taken in low quantity , 25mg or 11 seeds , i think you have to reset his dose ..
its my personal view, i would appreciate if other member's share any suggstions over it ..
Best Regards
Take Care
Umair
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Thank you Maha,
Umair, I am giving my son and daughter 1/4 tsp each. I am not an expert though - I have read on the site that adults take 1/2 tsp therefore I though that 1/4 tsp would be good for the kids ??? ??? Not sure...
Sharmin
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One thing I notice in this thread is that sometimes people are talking about taking nigella seeds and sometimes nigella oil, and with the oil there is a big difference between a cold pressed nigella oil and an essential nigella oil, as essential oils are very concentrated. When I read one teaspoon of nigella oil, I assume it is the cold pressed oil, which is safe to take in teaspoon quantities. Essential oils would be measured in drops and a much smaller volume would be used. So, the different forms should be used according to that form and can't really be compared.
If you Google "nigella oil" you will see many results concerning studies on the many different properties and medicinal uses of nigella. It's an amazing and tasty herb, and I've been using it in many different foods. Today was in egg salad. I hope it has some effect on my asthma.
Maha, that's great that the hematologist is also a nutritionist. I wish more doctors would study the value of nutrients, including the properties of herbs.
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Yes Andy, you are right, the oil I use is cold pressed. We had asked the doc about the dose and he insisted on giving him one tsp and at that time Hassan was just 2. He has taken it for 6 months previous to starting Asunra and the only problem he had was stools. But now I know it was because of Aloevera. Almost everyone on Exjade observe an elevated ALT readings, but Alhumdulillah Hassan`s ALT so far is in the middle of the normal scale. Maybe it could be the blackseed oil he had or maybe not.
Another thing I would like to mention here that the doc asked us to give five dates ( Barni dates) daily. I did find Barni dates here (its one of the cheapest variety), but couldn`t get Hassan to eat them .
maha
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One important note that i read about nigella seeds or oil is that it should not be taken by pregnant women because it can cause abortion as well as contraction of utreus after birth
manal
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We are buying Nigella seeds. The plan is to grind them very fine, mix it with honey and try giving it to her. Hope she likes it.
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One important note that i read about nigella seeds or oil is that it should not be taken by pregnant women because it can cause abortion as well as contraction of utreus after birth
Manal, thank you for that info. A friend of mine has severe allergies, some respiratory. I was going to recommend nigella because she does not wish to be on antihistamines during pregnancy (she is hoping to get pregnant soon). I was going to ask whether it would be a good idea for a pregnant woman to be taking nigella - and you have answered my question for me :)
Canadian Family, good luck with the nigella.
Sharmin
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You welcome Sharmin :hugfriend
Actually i was astonished to read this information, but there was no explaination for it
manal
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Hi All ,
i wana ask that , if anyone who is on Asunra/Exjade is using Nigella+honey ??... one of my friend is on exjade and want to start Nigella+honey but only question he have iis anyone using both things at the same time ,, not exactly same but on empty stomach with difference of 3 hours in morning that isanother qeustion but first and important question is he can take nigella while he is using asunra/exjade ...
Best Regards
Umair
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Nigella has no known toxicity level. It is extremely safe to take. But, you should also understand some important facts about Nigella.
There is no need to take Nigella on an empty stomach. In fact, by doing so, you are eliminating one of its proven effects. This is extremely important to diabetics.
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T8D-4TY45GJ-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=041caf9e2ed225fa9758602bb8c949e0
Results
The aqueous extract of Nigella sativa (0.1 pg/ml to 100 ng/ml) exerted dose-dependent inhibition of sodium-dependent glucose transport across isolated rat jejunum. Maximal inhibition exceeded 80% and IC50 was close to 10 pg/ml. An oral glucose tolerance test was carried out in rats after the initial dose and after a 6-week treatment of Nigella sativa (2 g/(kg day)), and compared to metformin (300 mg/(kg day)). Chronic Nigella sativa treatment improved glucose tolerance as efficiently as metformin. Nigella sativa and metformin also reduced body weight without any toxic effect.
Conclusions
To our knowledge, this is the first demonstration that Nigella sativa directly inhibits the electrogenic intestinal absorption of glucose in vitro. Together with the observed improvement of glucose tolerance and body weight in rats after chronic oral administration in vivo, these effects further validate the traditional use of Nigella sativa seeds against diabetes.
If you take Nigella on an empty stomach, it won't do much good for the purpose of inhibiting glucose absorption in the stomach. Obviously, Nigella will do much better for diabetics if taken with food. :food
As far as taking Nigella with Exjade, think about what Nigella does for hepatitis patients. It lowers the liver enzyme levels. This is exactly what is often needed with patients on Exjade. You want to keep your liver enzymes in check while using Exjade because if they get high, you have to stop Exjade.
In a study concerning the effect of Nigella on liver surgery patients, not only was it found that in prevented damage to the liver that is common after this type of surgery, but also that patients using Nigella had much lower levels of liver enzymes.
http://www.medicalnewstoday.com/articles/122247.php
In this experimental study rats underwent hepatic ischemia for 45 min followed by 60 min period of reperfusion. Rats were intraperitoneally infused with only 0.9% saline solution in the control group. Rats in the treatment group received NS[Nigella sativa] (0.2 mL/kg) intraperitoneally, before ischemia and before reperfusion. Blood samples and liver tissues were harvested from the rats, and then the rats were sacrificed. Serum aspartate aminotransferase (AST), alanine aminotransferase (ALT), and lactate dehydrogenase (LDH) levels were determined. Total antioxidant capacity (TAC), catalase (CAT), total oxidative status (TOS), oxidative stress index (OSI) and myeloperoxidase (MPO) in hepatic tissue were measured. Also, liver tissue histopathology was evaluated by light microscope.
The levels of liver enzymes in the treatment group were significantly lower than those in the control group (P < 0.01). TAC in liver tissue was significantly higher in the treatment group than in the control group (P < 0.05 and P < 0.05, respectively). TOS, OSI and MPO in hepatic tissue were significantly lower in the group 3 than the group 2 (P < 0.05 for all). Histological tissue damage was milder in the Nigella sativa treatment group than that in the control group. These results suggest that NS treatment protects the rat liver against to hepatic ischemia-reperfusion injury.
Nigella sativa has no side effects.
I would propose that Nigella will have an overall positive and protective effect in patients using ALL chelation drugs, and especially in Exjade users.
Nigella is also beneficial to the overall immune system and is an immunomodulator. A review of the medicinal properties of Nigella can be seen at
http://www.scialert.net/pdfs/pjbs/2004/441-451.pdf
From the amount of patent applications that can be found online, dealing with the pharmaceutical use of Nigella, I would have to say that this is has been known for centuries. Nigella is a very important medicinal herb. Modern research has given much support to the statement "There is a cure for all diseases in Black Seed except death."
On the subject of taking things on an empty stomach. There are very few things that have to be taken on an empty stomach and since there are very few empty stomachs during the course of a day, these times should be reserved for things like Exjade and IP6. There is no need to make things more difficult by arbitrarily assigning a policy of "take on an empty stomach." Take Nigella with food. Take it in your food. For best results, either grind the seeds or fry in a dry pan just long enough for the seeds to pop and then use them as a spice. I love it in my tomato soup. :food
And one more thing. It has been proven that Nigella raises hemoglobin levels. This is what Ambareen experienced. Her gap between transfusions became longer by using Nigella.
Nigella is proving to be a very important part of the supplement routine for thals. I would recommend it to all (not just thals).
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dear Andy,
i cannot tolerate taking black seed as powder. i take it as oil. is this allright?
Mohamed
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Mohamed,
The oil is actually even more effective. It is what is used in most of the studies. It's an excellent way to use Nigella.
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Andy,
I totally agree with you,i think nigella has a positive effect over all,the increase in Z's transfusion intervals ,i think is the result of all the supplements she is taking,along with carao and nigella,i take nigella too,i didn't know about its effect of working as metformin,i think i'll increase my dose to half a tea spoon.
Zaini.
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Mohamed
Since you are using the oil, i recommend that you use the brand of El Shourouk that you will find in Karama in midan el Ismalia/heliopolis. It is very pure and trusted brand
manal
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thanks Andy and Manal. :wink
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I just realize I took Nigella (plus honey) only once!
I wanted to take Nigella in evening and I do take Exjade in morning...
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Hi all
I know this is kind of an old post but I would like to ask things on nigella / black seed oil.
My cousin bought a bottle of black seed oil from Saudi Arabia. Just wanted to know if all black see oil can be eat/drink - or some are used for external only? Even though I'm a Muslim, we in Malaysia don't really understand Arabic. Hope there are people in these forum from the Middle East who can asnwer this.
Thanks a lot!
Regards,
Julia
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Hi
I reside in saudi and you get two kinds here, one that can be applied only externally and the other which can be swallowed as well as applied. The one that comes in the white packing is the one that is applied externally. Theres nothing mentioned on the bottle other than makkan oil and alcohol free.The other one that can be swallowed has a lot of information like cold pressed, no cholestrol etc...When you go to the shops they ask us if we want to apply or drink it and thats how I know about it. The one for external application is a lot more expensive than the other one. If you are still in doubt you could give more details about the brand you have I could try and find out about it.
maha
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I would too like to consume this.
But unfortunately, there is nowhere such thing available in India or here as far as I know.
Anyone knows how could I get one or any online site where I can order which ships to India?
-P.
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Pratik,
You can use the seed itself. It's simple to use and easily available in India.
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Pratik,
You can use the seed itself. It's simple to use and easily available in India.
By what name should I go on purchasing it? Black seed? I don't know if anyone knows it here, I'll try though.
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Common names besides nigella are Black seeds, Black cumin, fennel flower, black caraway, nutmeg flower, Roman coriander, black onion seed, kalonji. Do you recognize any of the names?
Ambareen advised taking 1/2 teaspoon, put them in a dry pan on the stove and heat briefly until the seeds start to make a little popping sound. Grind the seeds and mix with one tablespoon of honey and eat.
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Common names besides nigella are Black seeds, Black cumin, fennel flower, black caraway, nutmeg flower, Roman coriander, black onion seed, kalonji. Do you recognize any of the names?
Ambareen advised taking 1/2 teaspoon, put them in a dry pan on the stove and heat briefly until the seeds start to make a little popping sound. Grind the seeds and mix with one tablespoon of honey and eat.
Do any of these resemble to "Flex seeds"? Because I've them and they are black, same appearance as black seed one can describe. I'll try getting those somehow. Already have ordered milk thistle previously.
I've been also taking "Liv. 52" by Himalaya with suspicious eyes (I don't have much trust but my dad advises me to take). Have you have any opinions on it's goodness?
-P.
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It's not cumin seed, it's only called black seed or kalonji in Hindi or habbey sauda in Arabic.. You just have to grind it and mix it honey and have it just less than half a tsp.. No pan frying deeded
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Common names besides nigella are Black seeds, Black cumin, fennel flower, black caraway, nutmeg flower, Roman coriander, black onion seed, kalonji. Do you recognize any of the names?
Ambareen advised taking 1/2 teaspoon, put them in a dry pan on the stove and heat briefly until the seeds start to make a little popping sound. Grind the seeds and mix with one tablespoon of honey and eat.
Andy, Pratik and everyone,
Nigella seeds are called Kalonji in india/hindi. They're tiny black seeds, pointed at one end and somewhat triangular in shape.
NOT to be confused with ....
Flax seeds are brown and flat tear shape, they contain omega 3.
Black cumin is called kala jeera, again its something totally different.
Caraway in india is probably called ajwain.
Also do not confuse Nigella with black sesame seeds (called kala til in india.), theyre also black tear shaped seeds but not triangular.
Here fennel is called saunf, Nutmeg is a large round nut, and coriander is dhania seeds.
I bought it and will start taking it, is it NECESSARY to take it with honey? Can i simply eat it by itself?
Also Andy - most spices here, we dry roast them to release the flavors, then we cool and grind them. All the branded ready made spices in stores are processed in that manner - for better aroma. I am not sue if the nutritional value changes.
I am trying to attach a pic of nigella so we can all confirm it.
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Hi Prets,
You can toast the seeds in a dry pan until you hear them begin to pop. They can then be ground and mixed with foods. They can also be used in a pepper mill and ground and used with foods as a spice.
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I tried chewing and swallowing the seeds with water, but it burns my throat. And then some throat bug going around has kept me sick for very long. Still recovering and throat still too sensitive.
I've also started getting the morning joint pains and am still anemic/pale. Has anyone on forums been evaluated for adrenal fatigue or fibromyalgia? The symptoms overlap and i read that adrenal problem can also make one look bloodless. I have a sleep disorder too, so getting an accurate cortisol evaluation is tricky.
I have seen people even with hemoglobin 9 who do not look as ghostly pale as I do. Also long term anemia itself can cause fibromyalgia and adrenal fatigue. I use a multivit with low iron but no luck so far.
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The way it was explained to me is that you toast the seeds briefly in a dry pan until they begin to pop. Then the seeds are ground and mixed with a spoonful of honey and taken that way.
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I guess people with severe throat allergies like mine cant mange anything remotely spicy - another member here had mentioned the burning. I cant even eat butter/cheese like normal people do, I get sick with throat burning.
But i do know that nigella is sprinkled whole on breads/rotis too, more like a decoration. So i guess i should work as long as the body and digest/assimilate it.
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Hi,
I found some black seed oil but don't know how to use it.
Is anyone else using it. If so how and how much for a 6 year old?
Zahra
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http://www.gourmetindia.com/img/kalonji.jpg
thought this picture might help in recognising it when searching for it.
Zahra
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Zahara it's best to eat the seeds in raw form with honey I took 11 seeds daily with one spoon of honey on empty stomach .