The super duper supplement thread!

mousesmom

New member
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

New member
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

New member
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

New member
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.
 

anonymous

New member
Sorry about not logging on. For some reason, it has not been working. I will look into it more. Anyway, my email is tjp1014@yahoo.com 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

New member
Sorry about not logging on. For some reason, it has not been working. I will look into it more. Anyway, my email is tjp1014@yahoo.com 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

New member
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

New member
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

New member
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. gshtreatment@ihc.com

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

Tom
 

anonymous

New member
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. gshtreatment@ihc.com

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

Tom
 

anonymous

New member
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

New member
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

New member
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

New member
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

New member
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

New member
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

New member
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

New member
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!
 
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