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Glutathione - why isn't it used?????

anonymous

New member
After reading many remarkable stories about the effects of taking oral and inhaled glutathione as well as liposomal glutathione I am amazed at why glutathione is not used as a treatment in cf and why there arent clinical trials going on (correct me if i'm wrong).

From the research I've done on glutathione I've discovered the following:

Glutathione is a protein made in body cells which is transported out of the cells through the CFTR channel protein - therefore in people wcf, the glutathione can not escape the cell and is eventually broken down in the cytoplasm.

This is just like the fact that in cf chloride ions cannot escape the cells because they also use the CFTR protein channel which isn't functional in CF.

Why is the fact that chloride ions can't get out of cells recognised but the fact that glutathione can't, isn't??

Glutathione has many important functions in the human body - including connections with the immune system (which could account for why cffers have many infections) - and it is obviously needed otherwise why would the body make it in the first place??

I don't understand why it's not being given as a treatment - we take salt tablets afterall!

lauren
 

Diane

New member
I hear that there are trials being done, and i hope that it is accurate info. I started using glutathione over a year and a half ago, because i dont want to wait years till it finally gets approved. It seems that the only ones in a hurry to get anything accomplished are those of us that have the disease . I told my doctor i wanted to give it a try, and he said that would be fine as long as i didnt inhale it. I have problems with hemoptysis and it isnt recommended that anyone with hemoptysis problems inhale glutathione since it can cause irritation. So i have been taking it orally and it has made a tremendous difference for me. I Hope and pray that the trials re under way and gsh ( glutathione) gets approved as a cf treatment.
~Diane 39 / cf / diabetes / b.cepacia
 

Diane

New member
Hi Tammy,
No I havent noticed any more bleeding, In fact i have noticed less. Probably because i am feeling better since being on the gsh, and i am coughing a bit less which would give my poor blood vessels in my lungs a rest. I have been getting sick less often and less severe ( i thank God for that). I have a lot more energy which is much enjoyed, because now i finally have the energy i used to. I am soooooooooo glad i decided to start taking gsh instead of waiting, i felt like i was hanging on by a string, but i now feel like i can consider myself to be doing fairly well<img src="i/expressions/face-icon-small-happy.gif" border="0">.i havent noticed any dramatic improvement in my pft's, but i also havent hd any decline in my numbers either which is always good. I am going to my doctor in 2 weeks and i will see if there are any good changes. Are you considering trying gsh? Hope all is well <img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia
 

anonymous

New member
my understanding is that is used for a certain type of CF, not all CF types will benefit...maybe this is why it is not used or recommended as much as we would all like it to be. What type of CF do you have? My daugheter is double delta F508....as far as I know this treatment will not work for her, unfortunately! Hopefully you have the type that it will work for and that you will benefit from it....best of luck and God bless!<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
I, too am sure that gsh is in the clinical trial phase now & get ready, because if it's deemed as beneficial for CFer's, the price is going to sky rocket! Which is sad....like we don't have enough expenses already. I think one reason why Dr's may not be Rx it is because there is no big drug company pushing it down their throats trying to get them to prescribe it. Just my 2 cents<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Hi Diane,

I've tried to take it off and on for a couple of years. Last year as I was trying to increase my dose my skin would get really itchy when I was hot. That was during the spring/summer. Last winter I tried to take it again and I ended up with a cold. I wasn't able to shake the cough it until I stopped the GSH. I have never even been able to get up to the theraputic dose that Dr. Bishop recommends. I've also been doing one inhaled dose a day for quite a while. I recently stopped because I kept having small lung bleeds. I don't think I've had one since I stopped.

So that's where I am now!!!

Keep us posted on your doctors visit.

Tammy 43wcf
 

Diane

New member
Hi Tammy,
I wanted to let you know i do not tke the dose that Dr. Bishop recommends. I take 3 per day just like the back of the bottle says ( with 500 mg. vit. C with each dose). I started out taking what Dr. Bishops protocol recommends and then cut it down to just the three a day and found out that the 3 per day works just as well as when i was taking 6 ( or more) per day. One other thing...... I tried a different brand ( prism brand) that already had the vit.c in it, and became congested over a small period of time and decided to go back to my original brand ( Jarrow) and within a day or 2 the congestion went away. Of coarse this could be coincidence, but i also notice that when i dont take the gsh regulary i become more congested then as well. Inhaling gsh may have caused you to have small bleeds , i did read it can be very irritating to the lungs, and should not be inhaled by anyone who has lung bleeding problems or anyone who is fev1 below 30%, or on the waiting list for a transplant. Now then again ....i also read of people who had fev1% lower than 30% and tried gsh and had great results. Who's to say whats right and whats wrong.<img src="i/expressions/face-icon-small-confused.gif" border="0">
It seems to me that even with our best treatments it is still a "hit or miss" game. I am not one to be a player who always follows the rules, especially when the rules dont always give favorable and consistant results. I had to try gsh because like i said, i felt i was hanging on by a string. Cf itself is still a disease that noone "fully" understands ( which is scary), so its hard to know sometimes if what we are doing ,to treat it, is completely effective or not. Like i said it is almost "hit or miss" and sometimes in a hit or miss game we have to start making our own calls . Gsh is one i had to make ,and im glad my doctor supported me in it, and that it is working for me. I thank God for that every day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you are feeling good and things are going well for you <img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia
 

anonymous

New member
Hi Diane,

Thanks so much for all your input. I may try oral GSH again. I have both Jarrow and Theranaturals sitting around here.

Tammy 43wcf
 

anonymous

New member
milk thistle,very powerfull antidioxident and similar to vit e but 10 times better helps the production of glutathione by ur liver up to 35 % more,ulso protect ur liver from the damage all them meds do to ur liver,,,???????????
 

anonymous

New member
cf people produce enough glutathione anyway its just that it can'tget out of cells - so how does the milk thistle help?
 

anonymous

New member
well if what u say is right and cf's produce enough glutathione already and it can't be utalized by the body cause its stuck in the cell then glutathione which acts intercellular and also acts outside the cell ,thats where the xtra production by the liver helps,the liver naturally produces xtra glutathione which is then sent to where needed,,,,still learning myself
 

anonymous

New member
where did you get your info from?
i still dont understand how the milk thislte can help - even if the liver makes more glutathione, it can't get out of there either.
 

anonymous

New member
Hi Diane,

I started oral GSH 3 days ago. I can already feel my lungs clearing out and my sinuses too. Last night my FEV1 was up in the 1.8 liter range. All summer it has been around 1.6 - 1.7. Last night I consistantly blew 1.82-1.88. My mucus production decreased last night too!

I'm only taking 500mg/day right now. I divide it up in the morning and night. I will stay with that for a couple of weeks and see if I can increase!!

So far so good! Thanks for all your input!!

Tammy 43wcf
 

Diane

New member
Hi Tammy,
Thats wonderful!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Im glad you decided to give it another try. Keep me updated on how things are going. Its amazing how we can feel a difference so quickly, isnt it? Keep up the good work !!<img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia
 
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