glutathione and dr. bishop

[love4josh]

my sons doctor just told me that the cff contacted dr bishop to
conduct a study on glutathione and dr bishop declined.  I was
surprised yet confused when he told me this.  I don't know
whether to believe the doc because he is so against inhaled
glutathione.<br>
I was wondering if any one has heard about this.<br>
I am concerned because the doc is scaring my 13 year old son.
 <br>
My son was very sick about a month ago, pfts were 27, he weighed 60
lbs when he was released from hospital with pic line.  Over
the past several years i had asked about alternative supplements,
specifically glutathione and the docs shot it down immediately
without discussion.  Weight has been an on going issue since
he was diagnosed cf at 4 mos.  There idea of making him gain
weight is to stuff him with calories, high cal high fat diet which
has never worked in all these years.  i was beyond frustrated
after this last hospital stay and have taken matters into my own
hands without the docs knowing.  My son, in one months time,
has pfts at 47 and his weight is 65lbs.  That was the biggest
increase in his pfts and weight in a months time, ever.  The
doc said whatever we are doing to keep doing it because its
obviously working, so i told him everything, all the supps, the new
diet, but NOT glutathione.  I even gave him back the
prescriptions he wrote from the last visit (one prescrip was
prednisone) so i could prove to him it was the supps and diet.
 He was clearly surprised and suddenly wants to work as a
team.  Even though I never mentioned glutathione the doc still
brought it up, maybe he suspects i'm giving it to my son.
 <br>
If it is true what the doc says, why would dr bishop refuse?
 <br>
Has anyone had any similar experience?

 

[Ratatosk]

There was a statement on the CFF website a few years ago that warned about trying glutathione and that they had contacted people about conducting a study on it and it was declined. Might still be posted on their site. L

 

[anonymous]

I am sorry that you are experiencing this. My doc who is pretty high up in the cff chain said the same thing to me.....cff wanted to do a studywith Bishop but he refused. Not the case at all.....of course, I am racking my brain trying to remember what happened.....do you have Valerie Hudson's email? She can answer that question for you......valerie_hudson@byu.edu.

She is a wealth of information and is brilliant...and has no problem with talking to people who are interested in glutathione(gsh).

My life has changed for the better since I took my health into my own hands....and away from my doctor<img src="i/expressions/face-icon-small-smile.gif" border="0"> Glutathione, l-arginine, curcumin, supplements, anti-inflammatory diet, probiotics...he thought they were all wishful thinking. After 3 years on all of my wishful thinking supplements, my doc says whatever I am doing keep it up.

Traditional meds are, of course, very important.....but, alternative therapy has saved my life.
mandy

 

[Ratatosk]

I did try to find the article on the CFF site -- I believe it was under consumer alerts about 3 years ago, about the time DS was born and diagnosed. I do remember at the time it was sort of a word to the wise about using supplements, alternative meds that may not be regulated and that they had made inquiries, asked people involved with it to submit info for research and hadn't gotten a response at that time. I don't believe they specficially mentioned Dr. Bishop's name, just that they had requested more info, requested they take part in a standaradized study and hadn't received a response.

It does appear when I searched their website that they are now in the process of doing studies regarding it.

 

[2005CFmom]

<a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/whatsnew.htm">http://members.tripod.com/uvicf/whatsnew.htm</a>

This is a link to a site that has some highlights about Dr. Bishop. For 2006 it says that he is working on getting a trial of oral glutathione for children to take place.

I have just been researching GSH and have come across some very interesting things. I will have to do more research before we decide to do anything. Did you know that there is a prescription GSH medication? Cachexon is an orphan drug approved for use in AIDS (this is my understanding so far, just came across this inforamtion last night and have not been able to check it out completely.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tellpharm.com/tellpharm.com_non_ssl/products/CACHEXON/Executive.asp">http://www.tellpharm.com/tellp...CACHEXON/Executive.asp</a>

Very interesting!

 

[anonymous]

I am interested in getting my kids to start inhaled GSH, but I no idea how to go about it. Where do I buy it, what nebs do we use and how much do I give?

I did give my kids oral GSH for about 6 months this past year. I stopped it after I failed to notice any signs that it was helping. I actually thought it decreased my daughter's appetite and she didn't gain much if any weight during that time maybe half a pound. I know most people see good results, so I was disappointed that I didn't. I do plan on starting it again.
Thanks for any advice.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[love4josh]

thank you for your replies.<br>
i have seen that there are many studies/up-coming studies for
glutathione and i do recall seeing something about some medication
having glutathione, i guess my main concern is why my sons doc is
so against it.  My son has been in a couple of studies, hes
taken medication with severe side effects, they, the docs, don't
seem concerned when they are suggesting or prescribing medications
but when it comes to other alternatives its a big NO we don't know
whats in it, or the long term effects.  They know long term
effects of some of these medications they prescribe and they
continue to prescribe them.  Please dont get me wrong, my son
still takes his cf meds and i truly believe that if it weren't for
meds and the docs my son wouldn't be here today.  It just
seems to me that these traditional medications and diet for cf has
my son in a ficious cycle that is resulting in a slow decline of
lung function and overall health.  <br>
My son literally looked like a stick person, he now looks more
healthy, he has color, his nail beds are real pink, he has meat on
his bones, hes thickening up.  i truly believe its the
supplements and diet.  The day after he got out of the
hospital i started giving him oral lecithin, taurine, nac, oral
glutathione and b-12, i continued the meds the docs had him on but
i changed his diet, no more high cal high fat drinks, shakes, or
food.  He is on a more rounded diet, with lots of various
fruits and vegetables.  he has had a steady increase in weight
and body fat since.  we started the probiotics and inhaled
glutathione just over two week ago.  in that two weeks his
pfts went from 39 to 47.  i cant help but to think that it is
the glutathione.   

 

[Diane]

I do only the oral Glutatione and i love it ! I have never tried the inhaled, because i have hemoptysis issues and my doctor said he isnt at all against the oral use of it , but i should not inhale it. I did some research on it, talked to others who were on the oral gsh and then decided to try it ( 3 and a half years ago) and have been using it since. I guess like with everything else, some will see a big benefit, some will not .

 

[CFHockeyMom]

A little OT but I thought it was worth mentioning...

Here's an article about glutathione (as generated by N-acetylcysteine) and a clinical trial currently taking place...

<a target=_blank class=ftalternatingbarlinklarge href="http://news-service.stanford.edu/news/2006/march15/med-cfibrosis-031506.html">http://news-service.stanford.e...-cfibrosis-031506.html</a>

Interesting stuff.

 

[love4josh]

i just finished reading the link you posted about NAC.  <br>
Over the last few years i had been reading up on NAC and the only
side effect or precaution i've seen was that taking HUGE amounts
could negatively affect the kidneys.  I find it almost amusing
that they warn about taking other nac supps and that there partners
are "inventors" and hold stake in the company supplying
this particular nac supp.  

 

[CFHockeyMom]

What supplements does Josh currently take?

We too have struggled with the high fat/high calorie diet. Sean is ~4'3" and 56lbs. He's not completely off the charts but close. He eats sooooo much fat and sugar, I think it's doing more harm than good (i.e. he's not getting enough nutrients). I really think that since CFer's can't process fat, it makes no sense to feed them a diet high in fat. I know our Dr./dietician would disagree. So, I'm just curious what Josh is eating now?

Sean's PFT's have been all over the map. One visit they're in the 80's then next they're in the 30's. It's so frustrating.

 

[my65roses4me]

<span style=" font-size: x-small;">This is the first I am hearing
about the med. What is it and who is Dr Bishop? Just curious.
Thanks<br>
Khristina 31 yr old cfer<br>
nevermind I just read about it. thanks<br>

 

[anonymous]

josh take 500 mg of lecithin which helps to breakdown and absorb fat.
600 mg nac to increase production of glutathione.
b-12 for increased energy.
probiotics to replace the good bacteria that antibiotics killed off.
he has always taken adeks, multivitamin.
he was taking 50 mg oral glutathione but we stopped that when he started inhaling 200 mg glutathione twice daily.
His diet is now well rounded, lots of fruits and vegetables. for example: he used to eat pancakes with lots of butter and syrup sometimes bacon every morning for breakfast. he still has this on occasion, but now he has cereal some mornings, toast and bacon other mornings and lots of times, especially on school days he eats a bananna with a large glass of chocolate milk (no enzymes with that because the bananna has all the enzymes he would need naturally)
He now is eating a variety of melons, salads, vegetables. I'm also making him try new things to expand his diet variety. This new diet is similar to what we were doing when he was little, but the nutritionist kept insisting high cal high fat and brand name shakes and drinks, the doctors were concerned about his growth and said we needed to follow the nutritionist advice. i kept telling them the drinks and shakes weren't working but they kept insisting and during the last bout in the hospital a month ago i told them i thought we needed to look at his diet from a different angle and they refuse. Now suddenly they want to know all about what we are doing and they want to work as a team. Go figure. I know i sound sarcastic but i have just been so frustrated about it all.

 

[my65roses4me]

probiotics to replace the good bacteria that antibiotics killed
off.. I know i sound sarcastic but i have just been so frustrated
about it all.</end quote></div><br>
<br>
Do the probiotics kill off any antibiotics that we take? I am on
the zithromax therefore I do not want to take probiotics if it
makes the zithromax less effective.

 

[anonymous]

in everything that i've read probiotics does not interfere with any medications in any way, its only purpose is to replenish the good bacteria that is naturaly found in the body. good bacteria helps fight the bad bacteria. good bacteria also helps the digestive system.

 

[my65roses4me]

<span style=" font-size: x-small;">I will read more about
probiotics so I can be better informed also. I got some probiotics
from a vitamin shop after my last hospitaliztion because the iv's
played havoc on my stomach. The lady that worked at the vitamin
shop told me that they kill off any antibiotics. So I didnt take it
long for the fear of it making the zithromax less effective. Thanks
for responding to my question. I will read more about it.

 

[anonymous]

Actually, you should not take probiotics within 2 hours of oral anti-biotics.....here is the reason.....probiotics are simply good bacteria...when you take an ORAL antibiotic you are taking something to kill ALL bateria, good and bad. So, if you take a probiotic with your antibiotic you are making your antibiotic less effective by adding lots of extra bacteria even though it is the good kind. Ideally, you want to take your antibiotic alone so that it can kill your infectious bacteria....in the process, your good bacteria gets killed as well......so, two hours or more after you take your antibiotic, take your probiotic to repopulate the good bacteria in the gut.

Remember, good bacteria fights many pathogenic bacteria including pseudo, it helps regulate inflammation, it helps stabilize the immune system.....ie helps allergies.

mandy

 

[anonymous]

Where can I get a high quality GSH supplement that I can inhale?

 

[anonymous]

TheraNaturals

<a target=_blank class=ftalternatingbarlinklarge href="http://www.theranaturals.com/">http://www.theranaturals.com/</a>

 

[anonymous]

I believe it is the reduced L-Glutathione.....buffered for inhalation.