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Faust
02-23-2006, 03:33 AM
Ok since we have all been talking about so many darn supplements that we take to help our CF, why don't we share what we take/do/injest/inhale all in one thread? Maybe the admin could make this a sticky (if this forum allows for stickies). Let's all share what we take. What I take is an ever evolving experiment. If something seems that it logically might help either my CF directly (like say oregano oil), or if it would help me generally (like vitamins, herbs, etc) for my bodies overall health, and it doesn't seem to have anything bad associated with it, i'll more than likely give it a shot. As for now I take a combination of vitamin and mineral supplements, EFA's, lycopene, some amino acids, and extracts from herbs and fruits and vegetables.


Here is what I currently take in no particular order (no need for dosing info, that would take a while)...Please add what you take, and maybe we can get a giant supplement thread going that others can refer to if they are looking to either get into supplementation, or change what they currently take. I am always looking for new substances to help myself even though I currently feel great, and I saw some of your responses in other threads, and i'm probably going to be ordering some new stuff. Anyways, here is what i take now:

Amino acids 2001mg (3 large pills daily - This is intended for weight lifters, but I was looking for a giant all in one amino acid supplement, and I found this): Alanine 318mg, Arginine 168mg, Aspartic Acid 654mg, Cysteine 162mg, Glutamic Acid 1050mg, Glycine 120mg, histidine 126mg, Isoleucine 324mg, Leucine 714mg, Lysine 564mg, Methionine 150mg, Phenylalanine 210mg, Proline 318mg, Serine 324mg, Threonine 396mg, Tryptophan 120mg, Tyrosine 198mg, Valine 206mg, 15mg cholesterol, 5g protein, 15mg (750% RDA) Vitamin B-6 as pyridoxine hydrochloride, Chromium (as chromium picolinate) 30mcg 25% RDA, Sodium 10mg.

Coenzyme B-Complex: B1 50mg, B2 50mg, Niacin 100mg, B6 80mg, Folic Acid 800mcg, B12 500mcg, d-Biotin 200mcg, Pantothenic Acid 50mg, Inositol Hexaniacinate 130mg, Soy Lecithin 100mg, para-aminobenzoic acid 50mg, pyridoxine alpha-ketoglutarate HCI 50mg, phosphatidyl choline 40mg, inositol hexaniacinate 26mg, alpha-lipoic acid 100mcg

Lycopene: elemental lycopene 221mg, rice bran oil 231mg, medium chain triglycerides

N-Acetyl Cysteine (NAC): 1800mg (600mg *3)

Complete EFA: Vitamin E 30IU, ALA (alpha-linolenic acid)(omega-3) 699 mg, Linoleic Acid (Omega-6) 520 mg, GLA (gamma-linolenic acid)(omega-6) 288 mg, EPA (eicosapentaenoic acid)(omega-3) 216 mg, DHA (docosahexaenoic acid)(omega-3) 138 mg.

Oreganol super strength capsules: 360mg * 2 or 3

Vitamin K: 100mcg

Vitamin B 12 (older one I hadn't finished from a while ago): cyanocobalamin 500mcg

Thyme Leaf (powdered thymus vulgaris): 425mg * 4

Cowslip flower: 450mg * 3

42 Fruits and Vegetables extract concentrated 100:1: 1400mg (thank god for cut and paste heh) banana fruit, tomato fruit, apples, strawberries, kiwi, peaches, whole red wine grapes, blueberries, mango, cantaloupe, pineapple, cranberries, bing cherries, red raspberries, red peppers, eggplant, plums, elderberries, apricots, carrots, ginger, beets, onion, sweet potato, white potato, broccoli, spinach, kale, Brussels sprouts, cabbage, orange, grapefruit, lemons, limes, spirulina, chlorella, alfalfa, barley grass, wheat grass, rye grass, cauliflower, corn.

Oregenol P73 regular oil: (3-4 drops under tongue * 2-3)

H2 Orega P73 (water soluble form of regular oreganol P73): 5-6 drops in neb *2


Anyways yeah that's what i'm currently taking, and always looking for different things to add, and possibly take away others. Yes I know some of the listed ingredients are present more than once in the different supplements so a little overkill on some. And yes, I know some of them like say the B vitamins are way overkill, and yes I know I have expensive pee <img src="i/expressions/face-icon-small-smile.gif" border="0">


I plan on nebbing glutathione soon, and hypertonic, and I used to take a real good multivitamin/multimineral from GNC called megaman, but I ran out a while back and was too lazy to go get more.

Anyways, that's what I take, so state what you guys take, and maybe we can get admin to make this a big sticky and keep it on the front page!

Faust
02-23-2006, 03:33 AM
Ok since we have all been talking about so many darn supplements that we take to help our CF, why don't we share what we take/do/injest/inhale all in one thread? Maybe the admin could make this a sticky (if this forum allows for stickies). Let's all share what we take. What I take is an ever evolving experiment. If something seems that it logically might help either my CF directly (like say oregano oil), or if it would help me generally (like vitamins, herbs, etc) for my bodies overall health, and it doesn't seem to have anything bad associated with it, i'll more than likely give it a shot. As for now I take a combination of vitamin and mineral supplements, EFA's, lycopene, some amino acids, and extracts from herbs and fruits and vegetables.


Here is what I currently take in no particular order (no need for dosing info, that would take a while)...Please add what you take, and maybe we can get a giant supplement thread going that others can refer to if they are looking to either get into supplementation, or change what they currently take. I am always looking for new substances to help myself even though I currently feel great, and I saw some of your responses in other threads, and i'm probably going to be ordering some new stuff. Anyways, here is what i take now:

Amino acids 2001mg (3 large pills daily - This is intended for weight lifters, but I was looking for a giant all in one amino acid supplement, and I found this): Alanine 318mg, Arginine 168mg, Aspartic Acid 654mg, Cysteine 162mg, Glutamic Acid 1050mg, Glycine 120mg, histidine 126mg, Isoleucine 324mg, Leucine 714mg, Lysine 564mg, Methionine 150mg, Phenylalanine 210mg, Proline 318mg, Serine 324mg, Threonine 396mg, Tryptophan 120mg, Tyrosine 198mg, Valine 206mg, 15mg cholesterol, 5g protein, 15mg (750% RDA) Vitamin B-6 as pyridoxine hydrochloride, Chromium (as chromium picolinate) 30mcg 25% RDA, Sodium 10mg.

Coenzyme B-Complex: B1 50mg, B2 50mg, Niacin 100mg, B6 80mg, Folic Acid 800mcg, B12 500mcg, d-Biotin 200mcg, Pantothenic Acid 50mg, Inositol Hexaniacinate 130mg, Soy Lecithin 100mg, para-aminobenzoic acid 50mg, pyridoxine alpha-ketoglutarate HCI 50mg, phosphatidyl choline 40mg, inositol hexaniacinate 26mg, alpha-lipoic acid 100mcg

Lycopene: elemental lycopene 221mg, rice bran oil 231mg, medium chain triglycerides

N-Acetyl Cysteine (NAC): 1800mg (600mg *3)

Complete EFA: Vitamin E 30IU, ALA (alpha-linolenic acid)(omega-3) 699 mg, Linoleic Acid (Omega-6) 520 mg, GLA (gamma-linolenic acid)(omega-6) 288 mg, EPA (eicosapentaenoic acid)(omega-3) 216 mg, DHA (docosahexaenoic acid)(omega-3) 138 mg.

Oreganol super strength capsules: 360mg * 2 or 3

Vitamin K: 100mcg

Vitamin B 12 (older one I hadn't finished from a while ago): cyanocobalamin 500mcg

Thyme Leaf (powdered thymus vulgaris): 425mg * 4

Cowslip flower: 450mg * 3

42 Fruits and Vegetables extract concentrated 100:1: 1400mg (thank god for cut and paste heh) banana fruit, tomato fruit, apples, strawberries, kiwi, peaches, whole red wine grapes, blueberries, mango, cantaloupe, pineapple, cranberries, bing cherries, red raspberries, red peppers, eggplant, plums, elderberries, apricots, carrots, ginger, beets, onion, sweet potato, white potato, broccoli, spinach, kale, Brussels sprouts, cabbage, orange, grapefruit, lemons, limes, spirulina, chlorella, alfalfa, barley grass, wheat grass, rye grass, cauliflower, corn.

Oregenol P73 regular oil: (3-4 drops under tongue * 2-3)

H2 Orega P73 (water soluble form of regular oreganol P73): 5-6 drops in neb *2


Anyways yeah that's what i'm currently taking, and always looking for different things to add, and possibly take away others. Yes I know some of the listed ingredients are present more than once in the different supplements so a little overkill on some. And yes, I know some of them like say the B vitamins are way overkill, and yes I know I have expensive pee <img src="i/expressions/face-icon-small-smile.gif" border="0">


I plan on nebbing glutathione soon, and hypertonic, and I used to take a real good multivitamin/multimineral from GNC called megaman, but I ran out a while back and was too lazy to go get more.

Anyways, that's what I take, so state what you guys take, and maybe we can get admin to make this a big sticky and keep it on the front page!

JBUCCA
02-23-2006, 12:05 PM
i thought i took alot of pills!! oh my god sean, you go boy, what ever keeps you going dont change!!!lol

JBUCCA
02-23-2006, 12:05 PM
i thought i took alot of pills!! oh my god sean, you go boy, what ever keeps you going dont change!!!lol

Faust
02-23-2006, 02:35 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>JBUCCA</b></i><br>i thought i took alot of pills!! oh my god sean, you go boy, what ever keeps you going dont change!!!lol<hr></blockquote>


Well that's what I currently take, but I wanted this to be a thread where others post what they take, and can serve as a database for ideas about supplements. So please everyone, post what you take!

Faust
02-23-2006, 02:35 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>JBUCCA</b></i><br>i thought i took alot of pills!! oh my god sean, you go boy, what ever keeps you going dont change!!!lol<hr></blockquote>


Well that's what I currently take, but I wanted this to be a thread where others post what they take, and can serve as a database for ideas about supplements. So please everyone, post what you take!

Faust
02-23-2006, 03:09 PM
Hey by the way, I was thinking of buying some GSH from theranaturals (the buffered type) in capsule form, but there are several varieties, and I noticed on another site someone linked, they sell a liquid form of it there in some lipid binding form. I was wanting to neb the stuff like I do the OO, but not sure what exactly to get. Anyone have any suggestions? I'm kind of lazy so if the liquid stuff was just as good, i'd just get that.


(the second place im refering to is the liposomal GSH from www.gshnow.com.)


Anyone? Bueller?

Faust
02-23-2006, 03:09 PM
Hey by the way, I was thinking of buying some GSH from theranaturals (the buffered type) in capsule form, but there are several varieties, and I noticed on another site someone linked, they sell a liquid form of it there in some lipid binding form. I was wanting to neb the stuff like I do the OO, but not sure what exactly to get. Anyone have any suggestions? I'm kind of lazy so if the liquid stuff was just as good, i'd just get that.


(the second place im refering to is the liposomal GSH from www.gshnow.com.)


Anyone? Bueller?

anonymous
02-23-2006, 03:13 PM
When I had my CF lungs, I was into all these supplements. I ended up taking Greens plus *(whole foods market)* I only took this for a year when I was waiting for my transplant and then stopped because I did not want to take immune boosters before the transplant. IT is a comphrensive product and I remember my blood work never looked so good. I think taking supplements are great if you can afford them.

Currently, I take Metagenics Intensive Care Forumla multi mineral complex-iron free. Sometimes I take added magnesium and calcium. Occasionally I take vitamin C in small doses once in a while. Another formula from Metagenics is called Endurabolic-glucose-insulin support formula. I take this maybe once per day with a high carb meal. It does help to balance my glucose but lately, I do not take it.

I was taking Jarrow Acidolphils pills but now that I am taking Kefir I no longer take probiotics by pill. I feel that the kefir has made the biggest difference in my over all health in the past week. My skin glows pink and appears smoother besides my pft are improving by twenty percent.

I only eat healthy meals so that helps a lot. I do not eat junk at all. I feel when you eat junk food it washes away any good nutrients that you take it.

Risa

anonymous
02-23-2006, 03:13 PM
When I had my CF lungs, I was into all these supplements. I ended up taking Greens plus *(whole foods market)* I only took this for a year when I was waiting for my transplant and then stopped because I did not want to take immune boosters before the transplant. IT is a comphrensive product and I remember my blood work never looked so good. I think taking supplements are great if you can afford them.

Currently, I take Metagenics Intensive Care Forumla multi mineral complex-iron free. Sometimes I take added magnesium and calcium. Occasionally I take vitamin C in small doses once in a while. Another formula from Metagenics is called Endurabolic-glucose-insulin support formula. I take this maybe once per day with a high carb meal. It does help to balance my glucose but lately, I do not take it.

I was taking Jarrow Acidolphils pills but now that I am taking Kefir I no longer take probiotics by pill. I feel that the kefir has made the biggest difference in my over all health in the past week. My skin glows pink and appears smoother besides my pft are improving by twenty percent.

I only eat healthy meals so that helps a lot. I do not eat junk at all. I feel when you eat junk food it washes away any good nutrients that you take it.

Risa

CowTown
02-23-2006, 03:57 PM
ADEKS (3 pills/day)

Vitamin C (1500 mg/day)

Lysine (on occasion)

Garlic (trying to eat a lot more of this per day)

Tums (1600 mg/day - to build bone density)

CowTown
02-23-2006, 03:57 PM
ADEKS (3 pills/day)

Vitamin C (1500 mg/day)

Lysine (on occasion)

Garlic (trying to eat a lot more of this per day)

Tums (1600 mg/day - to build bone density)

CowTown
02-23-2006, 03:57 PM
What's the latest with your quest to get a supplement link on the site?

CowTown
02-23-2006, 03:57 PM
What's the latest with your quest to get a supplement link on the site?

LouLou
02-23-2006, 06:29 PM
Sean, One of the amino acids you take ..
Phenylalanine 210mg
led me to question something I've been meaning to look up on the web for a while. On diet sodas, yogurts you sometimes see " Phenylketonurics - contains phenylalanine"
I always thought it was a cancer warning label without saying cancer but it is actually a warning label for people with the metabolic disorder Phenylketonuria, or PKU for short.
Check it out:
http://www.ess.sunysb.edu/tracy/whatis.html

LouLou
02-23-2006, 06:29 PM
Sean, One of the amino acids you take ..
Phenylalanine 210mg
led me to question something I've been meaning to look up on the web for a while. On diet sodas, yogurts you sometimes see " Phenylketonurics - contains phenylalanine"
I always thought it was a cancer warning label without saying cancer but it is actually a warning label for people with the metabolic disorder Phenylketonuria, or PKU for short.
Check it out:
http://www.ess.sunysb.edu/tracy/whatis.html

LouLou
02-23-2006, 06:42 PM
Here's what I take supplement-wise:

AM:
1 triple strength Oil of Oregano pill - P-73
1-1000 mg. Vitamin C
1-Centrum
2-ADEKS pills
3 drops H2 Orega P73 (water soluable) nebulized with brochialdialator

PM:
Vit.K-not sure mg dose - 1 pill
3% hypertonic saline in nebulizer every other evening - 3mg.
1 Viactiv chew for calcium - 500 mg.

LouLou
02-23-2006, 06:42 PM
Here's what I take supplement-wise:

AM:
1 triple strength Oil of Oregano pill - P-73
1-1000 mg. Vitamin C
1-Centrum
2-ADEKS pills
3 drops H2 Orega P73 (water soluable) nebulized with brochialdialator

PM:
Vit.K-not sure mg dose - 1 pill
3% hypertonic saline in nebulizer every other evening - 3mg.
1 Viactiv chew for calcium - 500 mg.

Faust
02-23-2006, 06:49 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>LouLou</b></i><br>Sean, One of the amino acids you take ..

Phenylalanine 210mg

led me to question something I've been meaning to look up on the web for a while. On diet sodas, yogurts you sometimes see " Phenylketonurics - contains phenylalanine"

I always thought it was a cancer warning label without saying cancer but it is actually a warning label for people with the metabolic disorder Phenylketonuria, or PKU for short.

Check it out:

http://www.ess.sunysb.edu/tracy/whatis.html<hr></blockquote>


Yeah me too, then I looked it up and also found out it wasn't a cancer warning.

Faust
02-23-2006, 06:49 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>LouLou</b></i><br>Sean, One of the amino acids you take ..

Phenylalanine 210mg

led me to question something I've been meaning to look up on the web for a while. On diet sodas, yogurts you sometimes see " Phenylketonurics - contains phenylalanine"

I always thought it was a cancer warning label without saying cancer but it is actually a warning label for people with the metabolic disorder Phenylketonuria, or PKU for short.

Check it out:

http://www.ess.sunysb.edu/tracy/whatis.html<hr></blockquote>


Yeah me too, then I looked it up and also found out it wasn't a cancer warning.

Faust
02-23-2006, 07:24 PM
Anyone on the GSH? Answer me before I start killing kittens!

Faust
02-23-2006, 07:24 PM
Anyone on the GSH? Answer me before I start killing kittens!

anonymous
02-23-2006, 07:32 PM
Me!<img src="i/expressions/face-icon-small-happy.gif" border="0">

anonymous
02-23-2006, 07:32 PM
Me!<img src="i/expressions/face-icon-small-happy.gif" border="0">

Joblazer86
02-23-2006, 07:38 PM
good idea for supplements............. here are mine!!!!

gsh capsules 500 mg every 3 hrs.

tumeric 400 mg 3 capsules a day

garlic capsules 1000 mg 3 capsules a day

magnesium 400 mg 4 capsules a day

nac 600 mg once a day

epa 1000 mg 3 capsules a day

monolaurin 500mg 6 capsules a day

oreganol p73 super strength gel caps 2 capsules a day

oreganol p73 super strength 4 drops morning and night

acidophilus 3 capsules a day

l-lysine 500 mg 2 capsules a day

phosphyidil choline capsules a day

vit k 100 3 capsules a day

acai 1000 mg 4 capsules a day (website is www.acaiforlife.com if interested)

cell food 32 drops a day

calcium 600 mg 3 capsules a day

Joblazer86
02-23-2006, 07:38 PM
good idea for supplements............. here are mine!!!!

gsh capsules 500 mg every 3 hrs.

tumeric 400 mg 3 capsules a day

garlic capsules 1000 mg 3 capsules a day

magnesium 400 mg 4 capsules a day

nac 600 mg once a day

epa 1000 mg 3 capsules a day

monolaurin 500mg 6 capsules a day

oreganol p73 super strength gel caps 2 capsules a day

oreganol p73 super strength 4 drops morning and night

acidophilus 3 capsules a day

l-lysine 500 mg 2 capsules a day

phosphyidil choline capsules a day

vit k 100 3 capsules a day

acai 1000 mg 4 capsules a day (website is www.acaiforlife.com if interested)

cell food 32 drops a day

calcium 600 mg 3 capsules a day

Faust
02-23-2006, 07:40 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Me!<img src="i/expressions/face-icon-small-happy.gif" border="0"><hr></blockquote>


Ok this is a start...Now mind telling me what type you take, and how you administer it? I'm looking to neb the buffered stuff, but want to know what exact type peeps recommend, and what type of doseage they are on.

Faust
02-23-2006, 07:40 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Me!<img src="i/expressions/face-icon-small-happy.gif" border="0"><hr></blockquote>


Ok this is a start...Now mind telling me what type you take, and how you administer it? I'm looking to neb the buffered stuff, but want to know what exact type peeps recommend, and what type of doseage they are on.

anonymous
02-23-2006, 07:43 PM
Good Sense of Humour<img src="i/expressions/face-icon-small-happy.gif" border="0">

anonymous
02-23-2006, 07:43 PM
Good Sense of Humour<img src="i/expressions/face-icon-small-happy.gif" border="0">

Joblazer86
02-23-2006, 07:43 PM
oh and muscle milk when weight lifting this stuff has 638 calories with milk and 252 for fat!!!! just like scandi's.... oh the theranatural thing sean is the way to go cuz it's buffered. the other one that u get from wellness is a lipid and can't be nebulized. if u start doing it u need to start out small and work urself up to the recommended dose. have u emailed the doctor in utah who does it and gotten a protocal from them. i know his assistant is valerie hudson but 4got his name. they will explain everything to u through email. if u need more help sean just ask.

Joblazer86
02-23-2006, 07:43 PM
oh and muscle milk when weight lifting this stuff has 638 calories with milk and 252 for fat!!!! just like scandi's.... oh the theranatural thing sean is the way to go cuz it's buffered. the other one that u get from wellness is a lipid and can't be nebulized. if u start doing it u need to start out small and work urself up to the recommended dose. have u emailed the doctor in utah who does it and gotten a protocal from them. i know his assistant is valerie hudson but 4got his name. they will explain everything to u through email. if u need more help sean just ask.

Faust
02-23-2006, 07:47 PM
Yeah I mean, i don't need them to hold my hand really, but just curious as to best carrier solution, best way to mix, best type of their brand to use, all that crap. I'm currently on a ton of NAC (like 1800mg daily), so maybe I don't even need GSH, because they say NAC stimulated your body to produce the stuff.

Faust
02-23-2006, 07:47 PM
Yeah I mean, i don't need them to hold my hand really, but just curious as to best carrier solution, best way to mix, best type of their brand to use, all that crap. I'm currently on a ton of NAC (like 1800mg daily), so maybe I don't even need GSH, because they say NAC stimulated your body to produce the stuff.

littledebbie
02-23-2006, 08:12 PM
What is nac? please <img src="i/expressions/face-icon-small-smile.gif" border="0">

littledebbie
02-23-2006, 08:12 PM
What is nac? please <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
02-23-2006, 08:38 PM
I think people with CF are taking way too much GSH. I am with you Sean taking adequates amount of nac will help. I think pwcf are better off taking Glutamine. Perhaps GSH in small doses not in the thousands of miligrams. ANything in excess for too long will become toxic
Risa

anonymous
02-23-2006, 08:38 PM
I think people with CF are taking way too much GSH. I am with you Sean taking adequates amount of nac will help. I think pwcf are better off taking Glutamine. Perhaps GSH in small doses not in the thousands of miligrams. ANything in excess for too long will become toxic
Risa

anonymous
02-23-2006, 09:05 PM
To the individual who takes Tums to build bone density:

I'm assuming you're saying you take them for the calcium content. I suggest taking a calcium supplement instead, because Tums are antacids which decreases the acid in your stomach. In order for your body to efficiently absorb calcium, it needs the stomach acid. So in conclusion: Decreased stomach acid = Decreased calcium absorption = Waste of time and money trying to get your calcium needs from Tums (or any other antacid). While it does say "calcium source" on the bottle, theoretically it is, seeing as if you analyzed it in a lab, there would be a calcium content. However, things work much differently in the body, which is why correctly taking supplements in pill form can be a tricky thing. I have a degree in Nutritional Science, and I find it has been extremely beneficial in regards to actually being able to ensure I'm absorbing all these 'extras' I'm ingesting. Taking boat loads of supplements is pointless if your body isn't even absorbing them!

anonymous
02-23-2006, 09:05 PM
To the individual who takes Tums to build bone density:

I'm assuming you're saying you take them for the calcium content. I suggest taking a calcium supplement instead, because Tums are antacids which decreases the acid in your stomach. In order for your body to efficiently absorb calcium, it needs the stomach acid. So in conclusion: Decreased stomach acid = Decreased calcium absorption = Waste of time and money trying to get your calcium needs from Tums (or any other antacid). While it does say "calcium source" on the bottle, theoretically it is, seeing as if you analyzed it in a lab, there would be a calcium content. However, things work much differently in the body, which is why correctly taking supplements in pill form can be a tricky thing. I have a degree in Nutritional Science, and I find it has been extremely beneficial in regards to actually being able to ensure I'm absorbing all these 'extras' I'm ingesting. Taking boat loads of supplements is pointless if your body isn't even absorbing them!

anonymous
02-23-2006, 09:14 PM
My supplements;

2 ADEK's

3 curcumin pills (500 mg each)

1 garlic pill (triple strength)

1 brewer's yeast pill

2 omega-3 pills (1500 mg each - 1 from flax source and 1 from fish source)

1 calcium + vitamin D pill (650 mg calcium, 200 IU vitamin D)

1 selenium pill (100 ug)

4 - 7 drops of oregano oil under tongue (Joy of the Mountains brand, extra stength kind, 75% caracrol)

4 puffs salbutamol inhaler (or ventolin as I've always called it)

1 tbsp extra virgin coconut oil (maybe I'm weird, but I think this stuff tastes great! I just eat it by the spoonful!)

anonymous
02-23-2006, 09:14 PM
My supplements;

2 ADEK's

3 curcumin pills (500 mg each)

1 garlic pill (triple strength)

1 brewer's yeast pill

2 omega-3 pills (1500 mg each - 1 from flax source and 1 from fish source)

1 calcium + vitamin D pill (650 mg calcium, 200 IU vitamin D)

1 selenium pill (100 ug)

4 - 7 drops of oregano oil under tongue (Joy of the Mountains brand, extra stength kind, 75% caracrol)

4 puffs salbutamol inhaler (or ventolin as I've always called it)

1 tbsp extra virgin coconut oil (maybe I'm weird, but I think this stuff tastes great! I just eat it by the spoonful!)

anonymous
02-23-2006, 10:36 PM
For inhaling GSH, you need buffered GSH Plus from theranaturals - 100 capsules is $35.

Oral GSH can be theranaturals GSH caps or liposomal GSH from www.gshnow.com

The current recommended dosage is 30mg/kg/day or 66mg/lb/day - some use more some less. Most people use a combinations or inhaled and oral to achieve the recommended dosage amount. The total daily dosage should be split into doses every 3 - 4 hours.

To prepare inhaled GSH - boil distilled water for at least 5 minutes or use sterile water vials. Mix one capsule with 3 - 5 ml of water.

From everything I have researched, nowhere did I find that GSH is toxic. In fact large doses are given to people who overdose on acetominophen and other drugs since GSH is used in detoxifiying the body. It is manufatured in the liver for this purpose.

On the other hand, NAC can be toxic to the liver if given in high doses.

Please refer to this website for alot of information about GSH and cystic fibrosis.

<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/research.htm
">http://members.tripod.com/uvicf/research.htm
</a>
Sean,

The NAC that you are currently taking is increasing your GSH levels in your liver, lymphocytes, and red blood cells. However, none of the GSH is reaching your lung lining fluid because it cannot be transported out of the cells due to the non-functioning CFTR. Inhaled GSH directly affects the lungs by reducing inflammation, attenuating neutrophils, and acting as a mucolytic.

Sorry to sound like a GSH salesperson. I just know that it has been a great help to my son.

One thing else, it is recommended that GSH is inhaled using a mask since it can also benefit the sinuses by reducing sinus infections and preventing polyps.

Tom

anonymous
02-23-2006, 10:36 PM
For inhaling GSH, you need buffered GSH Plus from theranaturals - 100 capsules is $35.

Oral GSH can be theranaturals GSH caps or liposomal GSH from www.gshnow.com

The current recommended dosage is 30mg/kg/day or 66mg/lb/day - some use more some less. Most people use a combinations or inhaled and oral to achieve the recommended dosage amount. The total daily dosage should be split into doses every 3 - 4 hours.

To prepare inhaled GSH - boil distilled water for at least 5 minutes or use sterile water vials. Mix one capsule with 3 - 5 ml of water.

From everything I have researched, nowhere did I find that GSH is toxic. In fact large doses are given to people who overdose on acetominophen and other drugs since GSH is used in detoxifiying the body. It is manufatured in the liver for this purpose.

On the other hand, NAC can be toxic to the liver if given in high doses.

Please refer to this website for alot of information about GSH and cystic fibrosis.

<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/research.htm
">http://members.tripod.com/uvicf/research.htm
</a>
Sean,

The NAC that you are currently taking is increasing your GSH levels in your liver, lymphocytes, and red blood cells. However, none of the GSH is reaching your lung lining fluid because it cannot be transported out of the cells due to the non-functioning CFTR. Inhaled GSH directly affects the lungs by reducing inflammation, attenuating neutrophils, and acting as a mucolytic.

Sorry to sound like a GSH salesperson. I just know that it has been a great help to my son.

One thing else, it is recommended that GSH is inhaled using a mask since it can also benefit the sinuses by reducing sinus infections and preventing polyps.

Tom

anonymous
02-23-2006, 10:43 PM
You can call me another Glut salesperson, too. It's really helped me.

My daily:

Vit A in the form of Cod liver oil (easily digestible)
Vit D
Vit E

(I just got my ADEK in the mail-I'm starting it tommorrow.)

Glutathione capsule

NAC capsule

Lysine

Zinc

Vit C

Mucinex

Albuterol, Tobi, Pulmozyme, Hypertonic Saline, Pulmocort

Protonix, Zithromax, Cipro...................Whew!!!

Christian

anonymous
02-23-2006, 10:43 PM
You can call me another Glut salesperson, too. It's really helped me.

My daily:

Vit A in the form of Cod liver oil (easily digestible)
Vit D
Vit E

(I just got my ADEK in the mail-I'm starting it tommorrow.)

Glutathione capsule

NAC capsule

Lysine

Zinc

Vit C

Mucinex

Albuterol, Tobi, Pulmozyme, Hypertonic Saline, Pulmocort

Protonix, Zithromax, Cipro...................Whew!!!

Christian

anonymous
02-23-2006, 10:44 PM
One thing I forgot to put is my last post about GSH:

The doctor who did the inhaled GSH study in the US can be contacted at [email protected]

His name is Clark Bishop and he was a great help to us in the beginning. He will answer your questions and address your concerns.

Tom

anonymous
02-23-2006, 10:44 PM
One thing I forgot to put is my last post about GSH:

The doctor who did the inhaled GSH study in the US can be contacted at [email protected]

His name is Clark Bishop and he was a great help to us in the beginning. He will answer your questions and address your concerns.

Tom

kybert
02-24-2006, 12:46 AM
vitabdeck
another multi vitamin which has more vitamins and mineral than vitabdeck and more of the b vitamins and iron than most other multivitamins
selenium
fish oil
magnesium
protein supplement
probiotics

i agree with risa about the gsh. people are overdosing on the stuff. please follow the instrustions on the bottle folks. anymore than that and you are overdosing and not to mention wasting your money.

kybert
02-24-2006, 12:46 AM
vitabdeck
another multi vitamin which has more vitamins and mineral than vitabdeck and more of the b vitamins and iron than most other multivitamins
selenium
fish oil
magnesium
protein supplement
probiotics

i agree with risa about the gsh. people are overdosing on the stuff. please follow the instrustions on the bottle folks. anymore than that and you are overdosing and not to mention wasting your money.

anonymous
02-24-2006, 12:50 AM
too much of anything is not good. Now too much money?? I have to think about that because if I had lots and lots I would set up funds for folks for folks with cf so all could benefit.<img src="i/expressions/face-icon-small-happy.gif" border="0"> and enjoy life to the full.
~Risa

anonymous
02-24-2006, 12:50 AM
too much of anything is not good. Now too much money?? I have to think about that because if I had lots and lots I would set up funds for folks for folks with cf so all could benefit.<img src="i/expressions/face-icon-small-happy.gif" border="0"> and enjoy life to the full.
~Risa

Faust
02-24-2006, 02:37 AM
Thanks a ton Tom. I'll get off my lazy rump tomorrow and get the ball rolling on the GSH. Adding another neb to my ritual will be a pain, but if the benefits are great, who cares. Question: Has anyone tried using the GSH in any of their other solutions? I'd like to add the GSH mixture to say my albuterol and oregano oil neb just to save time if that was possible. If GSH stable that way? Would it be harmed by any oils like OO or albuterol if I added them together? Think the GSH might mess with the oils properties?


And no, no sigh here, everyone discuss whatever they please supplement wise in this thread. Knowlege is power.

Faust
02-24-2006, 02:37 AM
Thanks a ton Tom. I'll get off my lazy rump tomorrow and get the ball rolling on the GSH. Adding another neb to my ritual will be a pain, but if the benefits are great, who cares. Question: Has anyone tried using the GSH in any of their other solutions? I'd like to add the GSH mixture to say my albuterol and oregano oil neb just to save time if that was possible. If GSH stable that way? Would it be harmed by any oils like OO or albuterol if I added them together? Think the GSH might mess with the oils properties?


And no, no sigh here, everyone discuss whatever they please supplement wise in this thread. Knowlege is power.

CowTown
02-24-2006, 05:34 AM
I just learned a ton on GSH tonight. It's incredible how our doctors (well mine anyways) have never talked about this before. The lack of GSH in our bodies is directly related to our defective CF gene, and we need to get GSH back into our bodies for our immune system's sake. I found some stuff from one of the links that Tom provided above. Thanks. Anyways, I wanted to share a couple of other links.

Several GSH Research Studies and Papers Related to CF:
http://members.tripod.com/uvicf/research/glutathione.htm

A very easy to understand paper called "A Layman's Explanation of GSH Augmentation Therapy for Cystic Fibrosis Patients":
http://members.tripod.com/uvicf/gsh/layman_gsh.htm

Therapeutic Approach:
"If you can't get GSH out of the cells because of the genetic defect, why not just take more into your body, whether by inhalation, oral supplementation, or even IV? In other diseases, this has worked effectively to restore normal levels of GSH. Restoring that GSH will prevent the oxidant damage, prevent the elastase damage and restore the killing capacity of the neutrophils -- which will in turn cause the body to produce less (that is, more normal levels of) neutrophils. The inflammation switch is turned to "off." Killer cells get the signal to "kill." Your mucus is thinner, as it should be. Lung protective coating is restored. Your body stops the bacteria and your body stops killing itself and starts effectively protecting itself." - Valerie M. Hudson, Ph.D. July 2000

CowTown
02-24-2006, 05:34 AM
I just learned a ton on GSH tonight. It's incredible how our doctors (well mine anyways) have never talked about this before. The lack of GSH in our bodies is directly related to our defective CF gene, and we need to get GSH back into our bodies for our immune system's sake. I found some stuff from one of the links that Tom provided above. Thanks. Anyways, I wanted to share a couple of other links.

Several GSH Research Studies and Papers Related to CF:
http://members.tripod.com/uvicf/research/glutathione.htm

A very easy to understand paper called "A Layman's Explanation of GSH Augmentation Therapy for Cystic Fibrosis Patients":
http://members.tripod.com/uvicf/gsh/layman_gsh.htm

Therapeutic Approach:
"If you can't get GSH out of the cells because of the genetic defect, why not just take more into your body, whether by inhalation, oral supplementation, or even IV? In other diseases, this has worked effectively to restore normal levels of GSH. Restoring that GSH will prevent the oxidant damage, prevent the elastase damage and restore the killing capacity of the neutrophils -- which will in turn cause the body to produce less (that is, more normal levels of) neutrophils. The inflammation switch is turned to "off." Killer cells get the signal to "kill." Your mucus is thinner, as it should be. Lung protective coating is restored. Your body stops the bacteria and your body stops killing itself and starts effectively protecting itself." - Valerie M. Hudson, Ph.D. July 2000

Faust
02-24-2006, 07:02 AM
@Mynewfy: You would be amazed at how much doctors either don't know about, or just won't tell us about when it comes to the benefits of things we can use supplement wise to help our condition. The premise behind western medicine is a total reactive approach, instead of a proactive approach. Thankfully we have the cystic fibrosis foundation around to try and get patient trials going regarding some substances that are considered "orphan drugs", and as such not many if any pharm companies are willing to invest real money into a potential product to help us.


There are doctors out there who do have an open mind, but not too many. Then you have the "I'm god, do as I say" ego types out there that further make problems for the patients. If CF patients were started off on (and had insurance pay for) supplements to help them deal with their malabsorption issues in the first place, you would see MANY more CF's now thriving than there are currently. Thank god that Hudson chick had some kids with CF and she took it as a personal agenda to look into every possible way to help our symptoms, or we might not have GSH being looked into now.


As it is, the potential to increase longevity and quality of life is pretty great now, considering everything. If you started to follow (and stuck to) a proper diet, chest clearance, exercise, strength resistance, proper supplement useage, and your standard medicine at a young age before your lungs were hamburger meat, you could more than likely drastically increase quality of life and possibly lifespan as well.


I know antibiotics have their place, but i'm personally sick of how they are used in this society, and especially with chronic illness like CF. Instead of SERIOUSLY putting effort into research to try and find substances that aren't toxic, and have basis in the natural world (from what I saw, GSH are just Amino Acids), they just give us some vitamins and either keep us on preventative antibiotics, or give us more antibiotics when we do get sick, then we get sick again and the cycle continues.

Something that treats the root of our symptoms is what's needed, like very strong antioxidants and natural strong antiinflamatories that both stop the cycle and save our lungs before they are too far gone. The principle behind GSH is awesome, and I hope it turns out to be exactly what they think it will be. I mean look at me, i'm a perfect example of this premise i'm talking about. I've been on conventional CF meds (including all the antibiotics) my entire life, and while I have good lungs for a 35 year old CF patient, if I would have had a medical professional show me the wonderful world of some of these supplements a long time ago, I would probably have much less lung damage than I do today. Look what just Oregano Oil has done for me. CF related arthritis, and my horrible gout 100% gone, where two of the most popular conventional medications couldn't help me. Look at my lungs now, as opposed to before with just the antibiotic approach. I'm like a completely different person now, and thats with not even trying GSH yet. In my opinion, our approach is totally flawed. Regardless if you believe in god or nature or whatever, everything we could ever need was put here for us to use (regardless by what), and all we need to do is look around and do research to find what works on what. Manage our symptoms with substances that don't totally disrupt our entire bodies ecosystem, and save the real antibiotics for when we are really in trouble.

Antibiotics are like using a daisy cutter bomb on a wonderful underwater reef, just to kill one fish. But the rest of all that wonderful marine life that is almost always killed off with that bomb, many are helpful to our health. Sadly, western medicine sees nothing wrong with killing the entire reef to kill off one fish. Not to mention down the road that fishes offspring will be back and have armor to thwart your bomb <img src="i/expressions/face-icon-small-sad.gif" border="0">

Faust
02-24-2006, 07:02 AM
@Mynewfy: You would be amazed at how much doctors either don't know about, or just won't tell us about when it comes to the benefits of things we can use supplement wise to help our condition. The premise behind western medicine is a total reactive approach, instead of a proactive approach. Thankfully we have the cystic fibrosis foundation around to try and get patient trials going regarding some substances that are considered "orphan drugs", and as such not many if any pharm companies are willing to invest real money into a potential product to help us.


There are doctors out there who do have an open mind, but not too many. Then you have the "I'm god, do as I say" ego types out there that further make problems for the patients. If CF patients were started off on (and had insurance pay for) supplements to help them deal with their malabsorption issues in the first place, you would see MANY more CF's now thriving than there are currently. Thank god that Hudson chick had some kids with CF and she took it as a personal agenda to look into every possible way to help our symptoms, or we might not have GSH being looked into now.


As it is, the potential to increase longevity and quality of life is pretty great now, considering everything. If you started to follow (and stuck to) a proper diet, chest clearance, exercise, strength resistance, proper supplement useage, and your standard medicine at a young age before your lungs were hamburger meat, you could more than likely drastically increase quality of life and possibly lifespan as well.


I know antibiotics have their place, but i'm personally sick of how they are used in this society, and especially with chronic illness like CF. Instead of SERIOUSLY putting effort into research to try and find substances that aren't toxic, and have basis in the natural world (from what I saw, GSH are just Amino Acids), they just give us some vitamins and either keep us on preventative antibiotics, or give us more antibiotics when we do get sick, then we get sick again and the cycle continues.

Something that treats the root of our symptoms is what's needed, like very strong antioxidants and natural strong antiinflamatories that both stop the cycle and save our lungs before they are too far gone. The principle behind GSH is awesome, and I hope it turns out to be exactly what they think it will be. I mean look at me, i'm a perfect example of this premise i'm talking about. I've been on conventional CF meds (including all the antibiotics) my entire life, and while I have good lungs for a 35 year old CF patient, if I would have had a medical professional show me the wonderful world of some of these supplements a long time ago, I would probably have much less lung damage than I do today. Look what just Oregano Oil has done for me. CF related arthritis, and my horrible gout 100% gone, where two of the most popular conventional medications couldn't help me. Look at my lungs now, as opposed to before with just the antibiotic approach. I'm like a completely different person now, and thats with not even trying GSH yet. In my opinion, our approach is totally flawed. Regardless if you believe in god or nature or whatever, everything we could ever need was put here for us to use (regardless by what), and all we need to do is look around and do research to find what works on what. Manage our symptoms with substances that don't totally disrupt our entire bodies ecosystem, and save the real antibiotics for when we are really in trouble.

Antibiotics are like using a daisy cutter bomb on a wonderful underwater reef, just to kill one fish. But the rest of all that wonderful marine life that is almost always killed off with that bomb, many are helpful to our health. Sadly, western medicine sees nothing wrong with killing the entire reef to kill off one fish. Not to mention down the road that fishes offspring will be back and have armor to thwart your bomb <img src="i/expressions/face-icon-small-sad.gif" border="0">

Faust
02-24-2006, 07:14 AM
Case in point, read this (i've posted this before, but some might have missed it):




"For every cell in your body, you support 10 bacterial cells that make vitamins, trigger hormones, and may even influence how fat you are. Guess what happens to them when you pop penicillin?."



<a target=new class=ftalternatingbarlinklarge href="http://www.discover.com/issues/nov-05/features/are-antibiotics-killing/">Good Read</a>

Faust
02-24-2006, 07:14 AM
Case in point, read this (i've posted this before, but some might have missed it):




"For every cell in your body, you support 10 bacterial cells that make vitamins, trigger hormones, and may even influence how fat you are. Guess what happens to them when you pop penicillin?."



<a target=new class=ftalternatingbarlinklarge href="http://www.discover.com/issues/nov-05/features/are-antibiotics-killing/">Good Read</a>

mousesmom
02-24-2006, 10:54 AM
Yow!! you guys sure take lots of supliments. How do you afford it?

Monique only takes a multivitamin and sometimes Omega 3 and 6 oils. She used to use hypertonic Saline but doesn't need any nebs now.

I buy immune boosters, vitamins and Thyme oil for my African friend's daughter because she isn't doing too well and my friend can't afford any extras (I'm also trying to get hold of O Oil for her).

mousesmom
02-24-2006, 10:54 AM
Yow!! you guys sure take lots of supliments. How do you afford it?

Monique only takes a multivitamin and sometimes Omega 3 and 6 oils. She used to use hypertonic Saline but doesn't need any nebs now.

I buy immune boosters, vitamins and Thyme oil for my African friend's daughter because she isn't doing too well and my friend can't afford any extras (I'm also trying to get hold of O Oil for her).

kybert
02-24-2006, 12:18 PM
well, i cant really afford it. parents pay for everything. but i do shop around for the best price. i never buy these things from a regular chemist or supermarket because they charge insane prices. i usually get them off the net or a discount chemist. i also buy bigger bottles of things.

kybert
02-24-2006, 12:18 PM
well, i cant really afford it. parents pay for everything. but i do shop around for the best price. i never buy these things from a regular chemist or supermarket because they charge insane prices. i usually get them off the net or a discount chemist. i also buy bigger bottles of things.

LouLou
02-24-2006, 01:03 PM
Those taking GSH as oral capsules.. Do you feel it's making a difference or should we inhale it?

LouLou
02-24-2006, 01:03 PM
Those taking GSH as oral capsules.. Do you feel it's making a difference or should we inhale it?

anonymous
02-24-2006, 01:32 PM
Sorry about not logging on. For some reason, it has not been working. I will look into it more. Anyway, my email is [email protected] if anyone wants to email additional questions.

I only have GSH experience through giving it to my son.

Please use your own judgement when adding additional supplements, do your own research and talk to your doctors (not that they will agree with the use of supplements).

Tom

anonymous
02-24-2006, 01:32 PM
Sorry about not logging on. For some reason, it has not been working. I will look into it more. Anyway, my email is [email protected] if anyone wants to email additional questions.

I only have GSH experience through giving it to my son.

Please use your own judgement when adding additional supplements, do your own research and talk to your doctors (not that they will agree with the use of supplements).

Tom

LouLou
02-24-2006, 01:35 PM
There's mention of glutamin and Glutathione on this thread. Make sure you're not getting confused when you write something like the person that said he/she thinks CFers are taking too much glutamin.. did you mean Glutathione? This is confusing enough as it is - yicks!

Also, Tom's note about dosage for glutathione (GSH) ... 30mg/kg/day or 66mg/lb/day. In the link you sent us it says "the total daily dose of buffered GSH was approximately 66 mg/kg of body weight. Was your dosage statement a mistake or where is this from?

LouLou
02-24-2006, 01:35 PM
There's mention of glutamin and Glutathione on this thread. Make sure you're not getting confused when you write something like the person that said he/she thinks CFers are taking too much glutamin.. did you mean Glutathione? This is confusing enough as it is - yicks!

Also, Tom's note about dosage for glutathione (GSH) ... 30mg/kg/day or 66mg/lb/day. In the link you sent us it says "the total daily dose of buffered GSH was approximately 66 mg/kg of body weight. Was your dosage statement a mistake or where is this from?

anonymous
02-24-2006, 01:38 PM
Sean,

As for adding GSH to other meds... I don't know of anyone that adds GSH to other meds. Some people add it to normal sterile saline (0.9%) instead of distilled water to get a hypertonic solution.

There is a yahoo group started by the woman who wrote the papers on the website that I noted in my earlier post. The newsgroup is called wlgroup2. It is not that active at the moment, but she will answer any of your questions.

Also, Dr. Clark Bishop has been helpful in the past. He is a pulmonologist that has conducted a trial of inhaled GSH in cystic fibrosis patients. I think that I included in his email in another post. [email protected]

We currently use the Pari e-Flow and can nebulize 4ml of solution in about 3.5 minutes.

Tom

anonymous
02-24-2006, 01:38 PM
Sean,

As for adding GSH to other meds... I don't know of anyone that adds GSH to other meds. Some people add it to normal sterile saline (0.9%) instead of distilled water to get a hypertonic solution.

There is a yahoo group started by the woman who wrote the papers on the website that I noted in my earlier post. The newsgroup is called wlgroup2. It is not that active at the moment, but she will answer any of your questions.

Also, Dr. Clark Bishop has been helpful in the past. He is a pulmonologist that has conducted a trial of inhaled GSH in cystic fibrosis patients. I think that I included in his email in another post. [email protected]

We currently use the Pari e-Flow and can nebulize 4ml of solution in about 3.5 minutes.

Tom

anonymous
02-24-2006, 05:22 PM
Lauren,

You are correct. I made a mistake reporting the dosage. It is 66mg/kg/day which translates into 30mg/lb/day. I apologize for the confusion. I received these dosage amounts from Dr. Clark Bishop and Valerie Hudson.

Tom

anonymous
02-24-2006, 05:22 PM
Lauren,

You are correct. I made a mistake reporting the dosage. It is 66mg/kg/day which translates into 30mg/lb/day. I apologize for the confusion. I received these dosage amounts from Dr. Clark Bishop and Valerie Hudson.

Tom

anonymous
02-24-2006, 08:06 PM
Karen,

We use a face mask with the nebulizer. We use a child size for my son, but I think that adult versions are available. However, many people nebulize without a mask.

Tom

anonymous
02-24-2006, 08:06 PM
Karen,

We use a face mask with the nebulizer. We use a child size for my son, but I think that adult versions are available. However, many people nebulize without a mask.

Tom

CowTown
02-24-2006, 11:36 PM
Here are some great links:

1.) New CF Meds Being Studied (includes a *ton* on GSH, Hypertonic Saline & Tobi, etc.):
http://www3.nbnet.nb.ca/normap/newcfmeds.htm

2.) A discussion board specifically for GSH and CF:
http://members5.boardhost.com/CFGSH/

3.) A letter from the CFF to CF patients about Glutathione (Revised July 2004) (Added Jan. 22, 2005):
http://www.cff.org/UploadedFiles/living_with_cf/Files/Glutathione%20Q%20&%20AUpdateLH7-04.pdf

Fyi, these are all from the first link given. There's a lot of info in there.


Tom, what do you think about the CCF not receommending GSH yet since it's not FDA approved? Or what does Dr. Clark Bishop and Valerie Hudson think about that? Is that just them covering their rears for political reasons? Please tell us how your son has done on it, for how long and what positive/negative effects has he had? Do you have CF, do you take it also?

CowTown
02-24-2006, 11:36 PM
Here are some great links:

1.) New CF Meds Being Studied (includes a *ton* on GSH, Hypertonic Saline & Tobi, etc.):
http://www3.nbnet.nb.ca/normap/newcfmeds.htm

2.) A discussion board specifically for GSH and CF:
http://members5.boardhost.com/CFGSH/

3.) A letter from the CFF to CF patients about Glutathione (Revised July 2004) (Added Jan. 22, 2005):
http://www.cff.org/UploadedFiles/living_with_cf/Files/Glutathione%20Q%20&%20AUpdateLH7-04.pdf

Fyi, these are all from the first link given. There's a lot of info in there.


Tom, what do you think about the CCF not receommending GSH yet since it's not FDA approved? Or what does Dr. Clark Bishop and Valerie Hudson think about that? Is that just them covering their rears for political reasons? Please tell us how your son has done on it, for how long and what positive/negative effects has he had? Do you have CF, do you take it also?

CowTown
02-25-2006, 04:46 AM
More on GSH and NAC ----


Sean, from what I've been reading, taking too much NAC can be toxic for your liver and I wonder if you'r taking too much. Apparently, that's why when the body gets it naturally, it quickly converts it to GSH which is non-toxic. Just make sure you're not taking too much.....worries me.

I found this thread from the discussion board I listed in my previous post (above). Some of these people have been taking GSH for 3+years and are talking about their results which are mostly all positive. Here's one of those from a lady who's been on it for 3 years and discussed how GSH also promotes growth of yeast in a big way. So that can be an issue for some and need to treat the yeast as well.

Other poster: "....Before I started GSH my glutathione level was 52 for Red Blood cells and 156 for plasma.....both levels should have been between 200-400. After three months on oral glutathione (in the pill version), my numbers to 118 for RBCs and 170 for plasma. I quickly learned for me that I felt better on lipoceutical glutathione....so after several months on that my glutathione level went to high 200's in both areas. By the way, two different labs were testing my blood and both found similar levels. I, too, had stool problems initially with gsh. Infact, I became concerned that gsh was hurting me.....I did some research and found a doctor in San Franscico who dealt with gsh in his practice......his practice was not pulmonology or CF. Anyway, he suggested that in some of his AIDS patients who had critically low gsh he found that by supplementing gsh, he sometimes encountered an overgrowth of yeast. He said he could not prove it, but that in his experience he believed that if a person had an underlying yeast problem , the yeast would use the gsh to fuel its growth. He suggested that I get on anti-fungals and try it again. After three months on v-fend, a terriblly strong anti-fungal that a top infectious disease doctor in Dallas put me on after several blood tests, I began taking gsh again. And it has now changed my life. Two years ago I was very ill with an FEV1 of 47% and a poor quality of life...now, My FEV1 hovers at 59% and I am off of all inhaled steroids or oral steroids. I have to take probiotics morning and night or I feel the yeast growing...sounds strange, but for me yeast manifests itself as asthma. I have not been hospitalized since we got the yeast problem taken care of two years ago in 'beginning 04. I used to go in the hospital every 6 months from 1991 on. I have been on IV's twice in two years. The yeast was a contributing factor in the decline of my health....but, my quality of life improved so much after gsh I felt like my illnes was no longer a death sentence." 1/2006


I'm gearing up to take this stuff, so I keep wanting to share too. As you can tell, I'm Link Woman right now!

CowTown
02-25-2006, 04:46 AM
More on GSH and NAC ----


Sean, from what I've been reading, taking too much NAC can be toxic for your liver and I wonder if you'r taking too much. Apparently, that's why when the body gets it naturally, it quickly converts it to GSH which is non-toxic. Just make sure you're not taking too much.....worries me.

I found this thread from the discussion board I listed in my previous post (above). Some of these people have been taking GSH for 3+years and are talking about their results which are mostly all positive. Here's one of those from a lady who's been on it for 3 years and discussed how GSH also promotes growth of yeast in a big way. So that can be an issue for some and need to treat the yeast as well.

Other poster: "....Before I started GSH my glutathione level was 52 for Red Blood cells and 156 for plasma.....both levels should have been between 200-400. After three months on oral glutathione (in the pill version), my numbers to 118 for RBCs and 170 for plasma. I quickly learned for me that I felt better on lipoceutical glutathione....so after several months on that my glutathione level went to high 200's in both areas. By the way, two different labs were testing my blood and both found similar levels. I, too, had stool problems initially with gsh. Infact, I became concerned that gsh was hurting me.....I did some research and found a doctor in San Franscico who dealt with gsh in his practice......his practice was not pulmonology or CF. Anyway, he suggested that in some of his AIDS patients who had critically low gsh he found that by supplementing gsh, he sometimes encountered an overgrowth of yeast. He said he could not prove it, but that in his experience he believed that if a person had an underlying yeast problem , the yeast would use the gsh to fuel its growth. He suggested that I get on anti-fungals and try it again. After three months on v-fend, a terriblly strong anti-fungal that a top infectious disease doctor in Dallas put me on after several blood tests, I began taking gsh again. And it has now changed my life. Two years ago I was very ill with an FEV1 of 47% and a poor quality of life...now, My FEV1 hovers at 59% and I am off of all inhaled steroids or oral steroids. I have to take probiotics morning and night or I feel the yeast growing...sounds strange, but for me yeast manifests itself as asthma. I have not been hospitalized since we got the yeast problem taken care of two years ago in 'beginning 04. I used to go in the hospital every 6 months from 1991 on. I have been on IV's twice in two years. The yeast was a contributing factor in the decline of my health....but, my quality of life improved so much after gsh I felt like my illnes was no longer a death sentence." 1/2006


I'm gearing up to take this stuff, so I keep wanting to share too. As you can tell, I'm Link Woman right now!

bgchastain
02-27-2006, 02:46 PM
Here are my supplements
Multivitamin
Vit E
Omega-3 (fish oil)
L-Glutamine
Jarrow Acidolphis probiotic
Oreganol P-73 reg. strength pills

waiting for the water soluable oregano oil to neb.

bgchastain
02-27-2006, 02:46 PM
Here are my supplements
Multivitamin
Vit E
Omega-3 (fish oil)
L-Glutamine
Jarrow Acidolphis probiotic
Oreganol P-73 reg. strength pills

waiting for the water soluable oregano oil to neb.

CowTown
02-27-2006, 06:00 PM
Bonnie, how much omega-3 and Glutamine do you take?
Also, what does your doctor say about you taking those two, and the OO?
I'm going to talk to my doctor next month about all these things, it'll be interesting to see what he thinks.

CowTown
02-27-2006, 06:00 PM
Bonnie, how much omega-3 and Glutamine do you take?
Also, what does your doctor say about you taking those two, and the OO?
I'm going to talk to my doctor next month about all these things, it'll be interesting to see what he thinks.

catboogie
02-28-2006, 05:22 PM
here are my suppliments as i remember:

(daily)
Calcium
Omego-3 fish oils
ADEK
p 73 oregano oil (inhaled only, currently)

(often but not daily)
echinacea
Vitamin C
l-glutamine (powder)

(only when i'm sick or getting sick)
lots and lots more Vitamin C
echinacea
astragalus
garlic
zinc lozenges

(in the summer)
salt pills

catboogie
02-28-2006, 05:22 PM
here are my suppliments as i remember:

(daily)
Calcium
Omego-3 fish oils
ADEK
p 73 oregano oil (inhaled only, currently)

(often but not daily)
echinacea
Vitamin C
l-glutamine (powder)

(only when i'm sick or getting sick)
lots and lots more Vitamin C
echinacea
astragalus
garlic
zinc lozenges

(in the summer)
salt pills

bgchastain
02-28-2006, 06:19 PM
I take 1000 MG of the L-Glutamine and 1200 MG of Omega 3. My dr's where happy that I was trying new things on my own. I've never had a problem taking all of them together. I've been doing all of this for about 6 months now. I feel great and my drs didn't have a problem with it at all. Their exact words were "your the only one who can get you through this disease" and that's sooo true. Hope that helps.

bgchastain
02-28-2006, 06:19 PM
I take 1000 MG of the L-Glutamine and 1200 MG of Omega 3. My dr's where happy that I was trying new things on my own. I've never had a problem taking all of them together. I've been doing all of this for about 6 months now. I feel great and my drs didn't have a problem with it at all. Their exact words were "your the only one who can get you through this disease" and that's sooo true. Hope that helps.

CowTown
03-02-2006, 02:31 PM
I have a couple of questions about the oil of oregano. I was reading last night about it (finally) and some places stated that it is not good for long term use, there can be liver damage associated with this oil after a prolonged time. Other places said that it is fine to use with chronic illnesses as long it's not over use and given more than the recommended dosage.

Sean, what is your take on OO for long term use? I know you're doing it but any thoughts about what they say? It scares me a little (for myself), long term that is. I wonder if you use it for short term when you really need it. I also wonder if just oil dops under the tongue would be more of a long term use routine, since it's not so direct to the lungs. Also, I know your PFTs dropped to around 47% and then you took OO and they're up to like 90% now. What was your base line before they dropped to 47%? What did you drop from, 90%? Or have you surpassed even what you expected, PFT wise?

Any thoughts on this?

CowTown
03-02-2006, 02:31 PM
I have a couple of questions about the oil of oregano. I was reading last night about it (finally) and some places stated that it is not good for long term use, there can be liver damage associated with this oil after a prolonged time. Other places said that it is fine to use with chronic illnesses as long it's not over use and given more than the recommended dosage.

Sean, what is your take on OO for long term use? I know you're doing it but any thoughts about what they say? It scares me a little (for myself), long term that is. I wonder if you use it for short term when you really need it. I also wonder if just oil dops under the tongue would be more of a long term use routine, since it's not so direct to the lungs. Also, I know your PFTs dropped to around 47% and then you took OO and they're up to like 90% now. What was your base line before they dropped to 47%? What did you drop from, 90%? Or have you surpassed even what you expected, PFT wise?

Any thoughts on this?

Faust
03-02-2006, 04:42 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>MyNewfy</b></i><br>I have a couple of questions about the oil of oregano. I was reading last night about it (finally) and some places stated that it is not good for long term use, there can be liver damage associated with this oil after a prolonged time. Other places said that it is fine to use with chronic illnesses as long it's not over use and given more than the recommended dosage.



Sean, what is your take on OO for long term use? I know you're doing it but any thoughts about what they say? It scares me a little (for myself), long term that is. I wonder if you use it for short term when you really need it. I also wonder if just oil dops under the tongue would be more of a long term use routine, since it's not so direct to the lungs. Also, I know your PFTs dropped to around 47% and then you took OO and they're up to like 90% now. What was your base line before they dropped to 47%? What did you drop from, 90%? Or have you surpassed even what you expected, PFT wise?



Any thoughts on this?<hr></blockquote>


In my 20's, unless I was sick, i was almost always around 100%, but I was still always very chunky. Before I got sick and dropped down to 47% I was (If I remember correctly) about 87% when not sick. After one of my PFT's I noticed my smalls had gone down quite a ways, and my overall % was down a good deal as well. I wasn't "bouncing back" baseline wise, like I used to in my 20's. After I did the OO, when I was down to 47% (to me that is a HUGE drop), I went up to 99%, which was the area I was used to being in, when not sick, in my 20's. The only thing I did different was the oregano oil. They pumped me full with antibiotics for 24 days, and I developed an "unknown organism" in my lungs afterwards. The best they could get me to was like 83%, and I STILL had that real nasty crap in my chest. And thats when I started taking the OO.

As far as long term use, I have read the same things. I've been doing the OO straight, in several forms at the same time, for 6 months now (coming up on 7 months). I have had complete blood work done twice and a full exam twice, and both times all my readings were fine. I think the recommendations about not doing them long term were made for normal people, and not someone battling multi nasty bacteria infestations in their body. I also drink occasionally, so i'm sure if it was having any effect on my liver, I would surely know about it. To me, any potential risk (VERY potential in this case) are far outweighed by the benefits i'm receiving. If I would have never started the OO, who knows where I would be now, because the docs and medicine couldn't help me anymore and I wasn't flourishing anymore.


For anyone with concerns like this, I recommend they try the oil for a month, if no negative side effects present themselves and the patient feels much better, continue the treatment for say 3 months, and then go to one of your doctors and get a full blood work done, and look to see what a before and after reading of your liver function is.

Faust
03-02-2006, 04:42 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>MyNewfy</b></i><br>I have a couple of questions about the oil of oregano. I was reading last night about it (finally) and some places stated that it is not good for long term use, there can be liver damage associated with this oil after a prolonged time. Other places said that it is fine to use with chronic illnesses as long it's not over use and given more than the recommended dosage.



Sean, what is your take on OO for long term use? I know you're doing it but any thoughts about what they say? It scares me a little (for myself), long term that is. I wonder if you use it for short term when you really need it. I also wonder if just oil dops under the tongue would be more of a long term use routine, since it's not so direct to the lungs. Also, I know your PFTs dropped to around 47% and then you took OO and they're up to like 90% now. What was your base line before they dropped to 47%? What did you drop from, 90%? Or have you surpassed even what you expected, PFT wise?



Any thoughts on this?<hr></blockquote>


In my 20's, unless I was sick, i was almost always around 100%, but I was still always very chunky. Before I got sick and dropped down to 47% I was (If I remember correctly) about 87% when not sick. After one of my PFT's I noticed my smalls had gone down quite a ways, and my overall % was down a good deal as well. I wasn't "bouncing back" baseline wise, like I used to in my 20's. After I did the OO, when I was down to 47% (to me that is a HUGE drop), I went up to 99%, which was the area I was used to being in, when not sick, in my 20's. The only thing I did different was the oregano oil. They pumped me full with antibiotics for 24 days, and I developed an "unknown organism" in my lungs afterwards. The best they could get me to was like 83%, and I STILL had that real nasty crap in my chest. And thats when I started taking the OO.

As far as long term use, I have read the same things. I've been doing the OO straight, in several forms at the same time, for 6 months now (coming up on 7 months). I have had complete blood work done twice and a full exam twice, and both times all my readings were fine. I think the recommendations about not doing them long term were made for normal people, and not someone battling multi nasty bacteria infestations in their body. I also drink occasionally, so i'm sure if it was having any effect on my liver, I would surely know about it. To me, any potential risk (VERY potential in this case) are far outweighed by the benefits i'm receiving. If I would have never started the OO, who knows where I would be now, because the docs and medicine couldn't help me anymore and I wasn't flourishing anymore.


For anyone with concerns like this, I recommend they try the oil for a month, if no negative side effects present themselves and the patient feels much better, continue the treatment for say 3 months, and then go to one of your doctors and get a full blood work done, and look to see what a before and after reading of your liver function is.

anonymous
03-10-2006, 12:30 AM
what do mean oreg oil to neb. didnt know u could do that ?

anonymous
03-10-2006, 12:43 AM
how do you get the o oil for nebulizer how often do you use it and what kind . im 25 and doing pretty good went for a hospital stay at 19 for first time now its once a year for 2 weeks. i excersice regularly and try to stay in shape i just recently started taking oil of oreg. pills just prior to my last visit in feb. of 06 but didnt get to take them long enough to notice anything.i also take acidopholys and calcium pills and a vitamin. can you put me into the direction on stuff i neet to be taking i do feel that this helps better than antibiotics but doctors cant tell you that or they will get into trouble thanks a lot man . kevin

anonymous
03-14-2006, 09:32 AM
read some of your smashing info on site , bit scared as parent of cf baby. can you advise on supplements as dieticians dont seem to be very helpful so far.Mariella is 13 months had bowel blockage at birth and is currenttly well. {unlike nutty mother} with thanks sula

john81john
05-20-2006, 08:01 AM
Hi,

really great idea Sean, thanks.

So here are my meds. and supplements:
MEDICAMENTS:
<b>Pulmozyme</b> 1x 2.5 ml nebulised with european PARI eFlow Rapid
<b>Hypertonic saline</b> 2x10ml nebulised with european PARI eFlow Rapid
<b>Saline solution</b> 2x15 ml nebulised with european PARI eFlow Rapid
<b>Symbicort Turbohaler</b> 2x1 (bronchodilator) budesonidum 200 microgramm, formoteroli fumaras dihydricus 6 microgramm
<b>Creon 25000</b> 30-35 caps. daily
<b>Wobenzyme</b> 10-15 caps. daily

SUPPLEMENTS:
<b>Vit. E</b> caps. 2-3 x 200mg daily
<b>Vit. C</b>
<b>Na-Mg-Zn complex</b>
Na 333mg
Mg 133 mg
Zn 8.3 mg

<b>Ale yeasts (saccharomyces cerevisiae)</b> 3x4 tablets (0,45 g each) B1,B2,B6,B12 etc.
<b>BioMare imuno (oil from sharks liver) </b>2x3 caps. (300mg) (From Finland)

I have taken, and I want to start take it again:
<b>Omega 3 </b> 2-3 caps.
<b>Essential oregano oil 30% with 70% olive oil</b> 2x2 drops into water and eat it(from finland)
Acidophillus</b>
I want to start take :
<b>GSH</b>, I will study if oral caps. or ihnaled doses, it will depends on european market availability too...
<b>Oregano P73</b> caps. or inhaled doses,it will depends on european market availability too...

I am 25, FEV1 90% 75Kg, after inhalation I feel fine and I can play tennis or do mountain biking, but before...Good luck to all !

anonymous
08-10-2006, 04:08 PM
I'm 17 with CF, and have never heard of adding anything to a nebulizer aside from my prescribed meds! I've always wanted to add root beer to a ned and let it mist with me holding it away, just out of curiosity, but my mom was quite adamant about how that would "wreck the machine" lol, so I never tried it.

I'm quite intrigued by the oregano oil and GSH inhaled though. I'm in Alberta, Canada and my doctors have never even hinted about anything like that. Where could I buy some and what doses should I get, I'd like to get started asap <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
08-18-2006, 02:32 PM
Sean,
Do you find the Oreganol works for you? Do you notice any effect on congestion.
Here's a few more that I take
Co Q 10
Protein pills
colustrum
Mega doses of Acidophilous ( Bio K Brand is great)
theres more I'll have to go look.

anonymous
08-18-2006, 02:49 PM
Its different. The Stuff in Nutrasweet is bad. Aminos are ok unless you have this disease called PKU where you can not assimilate the phenaline.
When I eat nutrsweet i get brain numbing headaches and blurry vision real bad. I do have PKU, I do take lots of aminos.

anonymous
08-18-2006, 03:33 PM
I also neb Colloidal silver, wait before people gasp I use a brand called ASAP Solutions at 22 ppm. Does it work It is hard to tell. I end up taking so many things it is hard to keep track.
I also have been doing IV hydrogen peroxide. It kills stuff but not like I was hoping. I take it 2 times per week at a health clinic and and MD administers it.
I was taking a single dose for about 4 times and had some but not great results, I just started taking a double dose and it kicks it up a notch. I'll keep you posted. If any one has any questions feel free to email me rmotion @ yahoo
Obviously dont take h202 the kind in the drug strore I go to a doctor and get it in IV form. Ingesting or inhaling h202 is very dangerous. Google hydrogen peroxide therapy for research called " Hydrogen Peroxide Medical Miracle" by William Cambell Dougalas MD