Clubbed Fingers

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ImmortalGoddezz</b></i>

Lynda digital clubbing just means clubbing. (it's just another name for it).

Occasionally it's called Hippocratic fingers as well.



As for cause of clubbing it's really not established what causes it.

Although many of these associations are recognised (such as the link with lung cancer), some are based on a few observations and might be false. Prospective studies of patients presenting with clubbing have not been performed, and hence there are no reliable numbers as to the distribution of the causes and the prognosis.



Which is why I would not suggest taking GSH. How can you cure something that you don't know the root to?

I know that even though I'm almost 4 years post tx and my o2 is always 98-100 my fingers are clubbed, I'd hoped they would get better but they haven't. They always have been even pre-tx when my o2 dropped to the lower 90's, no change.</end quote></div>

Candice, regardless of taking GSH for the clubbing alone...it has been PROVEN that the extracellular levels are diminished in cf patients. Many people have great results taking it, whether it helps with clubbing or not. Inflammation is a major cause of cf damage, and GSH helps elleviate that. Why would you NOT try it?

And to the mother of a 9 yr old, it's never too early to start it. As i was saying, GSH is the most abundant, important antioxidant in human cells...so taking it will just try and get it up to "normal" levels

 

[Diane]

I've always had mild clubbing since i was a child, looooooooonng before i ever had any lung involvement with cf . And yes, Ender is right, our bodies need glutathione.

 

[IG]

Why would I not try it? Simple answer for a number of reasons.
#1 I am immunosuppressed.
If it ain't broke don't fix it.
#2 Inhaled GSH is only in Phase 2 of saftey and effectiveness Trials with the CFF
#3 Oral GSH is only in Phase 1 of safety and tolerability Trials with the CFF

Additionally;
"Animal and human studies demonstrate that adequate protein nutrition is crucial for the maintenance of GSH homeostasis." Homeostasis being the state of equilibrium in the body.

"Glutathione (gamma-glutamyl-cysteinyl-glycine; GSH) is the most abundant low-molecular-weight thiol, and GSH/glutathione disulfide is the major redox couple in animal cells." Basically if you go chomping around on lots of little animals you're set.

"A deficiency of gluthione is first noticed in the nervous system with a lack of co-ordination, tremors, mental disorders, and body balance, all caused by lesions in the brain."

What is important to remember is this "Glutathione deficiency contributes to oxidative stress, which plays a key role in aging and the pathogenesis (the production and development of disease) of many diseases (including kwashiorkor, seizure, Alzheimer's disease, Parkinson's disease, liver disease, cystic fibrosis, sickle cell anemia, HIV, AIDS, cancer, heart attack, stroke, and diabetes)."

Now what is oxidative stress you ask?
Basically the medical term for damage to plant or animal tissue caused by reactive oxygen species.

Now what is reactive oxygen species? I'm glad you asked Reactive oxygen species is superoxide, singlet oxygen, peroxynitrite or hydrogen peroxide. Basically things that come from normal metabolism processes and some things like cigarette smoke. BUT they are balanced out by anti-oxidents. Now, if that balance is off (you have too many oxidants) then it causes damage to your cells. Well duh. Smoke damages your lungs and your body can't produce enough anti-oxidants to counteract the pro-oxidants. Nothing new here.

Now lets summarize starting with the problem "Glutathione deficiency contributes to oxidative stress, which plays a key role in aging and the pathogenesis of many diseases" Things like cigarette smoke cause your lung tissue to be damaged but your body can counter act that by putting out anti-oxidents. Having Glutathion in you system contributes towards lots of good anti-oxidants in your system. "..studies demonstrate that adequate protein nutrition is crucial for the maintenance of GSH homeostasis."
Basically if your diet is adequate in meat then you get enough GSH. "Glutathione deficiency contributes to oxidative stress, which plays a key role in aging and the pathogenesis (the production and development of disease) of many diseases (cystic fibrosis)" If your body is deficient in Glutathione you will begin to exhibit these symptoms: lack of co-ordination, tremors, mental disorders, and body balance. But GSH deficiency only <i>contributes</i> to oxidative stress. Oxidative stress is what plays a key role in aging and the development of CF.

Sources:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14988435
">http://www.ncbi.nlm.nih.gov/en...ct&list_uids=14988435
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.anyvitamins.com/glutathione-info.htm
">http://www.anyvitamins.com/glutathione-info.htm
</a>
I mean sure if you want to load up your bodies with anti-oxidants that's your decision. But I'm not about to take somebody's word on this without doing my own research first.

 

[Ender]

Is your information for or against glutathione...cause based on what you just wrote, that would make me want to take it more??

How do you know you're not broke? Perhaps you are running subpar and you don't even know it? What would you have to base your feelings on...do you know what it's like to be normal (Hey i'm not being critical..just thinking).

The thing is, we make plenty of gsh in our cells...it's our ability to get them out of the cells that's the problem. So perhaps we don't have the symptoms of gsh deficiency, but we do have the inflammation and damage as a result of it not being where we need it.

Hey if you wanna wait 5 years for the cff to finish trials, that's your choice. However, for me, GSH is a safe, viable treatment alternative that just makes sense...

Kiel
<a target=_blank class=ftalternatingbarlinklarge href="http://67.95.204.82/Subsets/tirouv/sld001.htm">http://67.95.204.82/Subsets/tirouv/sld001.htm</a> check out that presentation

"In this issue of CHEST (see page 308), Bishop and colleagues report encouraging results from a small, double-blind, placebo-controlled clinical trial of inhaled glutathione in patients with cystic fibrosis. The rationale for this therapy lies in previous data reporting that glutathione levels in the lung epithelial lining fluid of patients with cystic fibrosis are low,1 and that cystic fibrosis lung disease is associated with increased oxidative damage.2 In addition, more recent studies3456 have also demonstrated that the cystic fibrosis transmembrane conductance regulator (CFTR), which is defective in cystic fibrosis, regulates a substantial portion of glutathione efflux into the epithelial lining fluid. "

From <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnz.org.nz/forum/viewtopic.php?t=93
">http://www.cfnz.org.nz/forum/viewtopic.php?t=93
</a>

 

[IG]

Now adding onto that just so people don't think I'm a stuck up b*tch nay-saying anything that comes along I will post part of a conversation that I had while writing the previous post.


Candice: anyway apparently GSH has had some positive studies published so far
Candice: <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16537378&query_hl=2&itool=pubmed_docsum
">http://www.ncbi.nlm.nih.gov/en...2&itool=pubmed_docsum
</a>Candice: but that's not the point.
Candice: It's not past safety trials, I don't think the FDA has approved it
Candice: and it's all in trial stages.
Candice: Which means the risks could outweigh the benefits.
Gordon: absolutely
Candice: and for child?
Candice: instead of being f'ed up by just having CF sombody is pushing a drug that nobody knows the toxicity to, it might be safe as water.
Candice: but even water kills in high enough doses.

I am reminded of Thalidomide in cases like this. There is a reason why we have the FDA, and drugs like that are one of them.
My suggestion for this is if you don't know what Thalidomide is look it up. It's a drug that was put out in the 50's and 60's in europe but not given FDA approval in the US (sleep aid and anti-nausea medication). It caused a lot of birth defects in women.

 

[Ender]

How can you compare GSH to thalidomide? Anyways, this is pointless. And i hope that pushing remark wasn't geared towards me.

One more point. Mandy posted an article about folic acid, that has the potential to pause the onset of cf disease...somewhat the same way GSH could do if given at a young age. Are you going to wait for the FDA to approve that? In the time that you wait (5-10 years) the damage could already have been done. I admit, we are not doctors here...and you should be critical of what people say. However, if someone posts incouraging information about a different product, I implore that you take the time and give it some though...read about it...find as much information you can. Time isn't our friend here...

Kiel

 

[princessjdc]

So this GSH thing you guys are talking about is mainly to fix the clubbing in the nails or is their other purposes in taking too?

 

[Diane]

LOL , Jennifer, clubbing wasnt even on my mind when i started taking gsh. In fact since ive been taking gsh (orally only) i havent noticed any changes in my fingers ( maybe because they arent clubbed badly). I took it because i felt like crap and my pft's had dropped after my embolizations and i felt i had to do something before i watched my life go down the toilet. After i did some research on gsh and spoke to some people who had been taking it, i decided to start taking it ( after i told my doctor about it). My doctor only advised i NOT inhale it since it is irritating to the lungs and with hemoptysis problems i didnt want to chance it. I noticed a difference quickly in my energy level. I actually had the energy i used to have before i had cepacia. I also get sick less often, and when i do its less severe. My pft's have stabilized, and i was able to get back to being active again which can only help my health. I have read on the gsh board about cf patients taking gsh and it helping with weight issues, stool issues, and also about the finger clubbing being less severe. Theres also a lot of other little tihngs mentioned here and there that it helps. I only noticed the energy, less sick and pft stabilizing and believe me.... it THRILLS me !! Its been a bit over 3 years ive been on gsh and like Keil said, i felt i didn thave the luxury to wait for trials to finish. If i had waited the trials STILL arent finished and i would have wasted another 3 years feeling crappy and who knows where my pft's would be now....scary.

 

[anonymous]

We asked DS's md about gsh. He said that there is little risk taking it orally, just that there is no proof that it will help. We're still in the early stages of deciding whether or not to start it. There was a post on gsh not too long ago that mentioned that there is a rx gsh drug for use with aids patients. So the FDA has approved its use in certain cases.

 

[princessjdc]

Ok, as I promised here are some photos of my fingers, even though its a little late but I got'em.

<img src="http://i26.photobucket.com/albums/c121/PrettygirlJDC/Myfingers9-14-06copy.gif">
I have my left hand which I write with and also my right hand, that was a little bit hard to do, but accomplished it.

I got a little bit carried away I know.
If there is a photo you want to see bigger by itself, just let me know.

Thanks Diane for telling me more about GSH.

 

[CowTown]

princessjdc,

This looks like an art piece! I think you could take this to the Met!
Muy Fabuloso. <img src="i/expressions/wine.gif" border="0"> <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[wuffles]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>princessjdc</b></i>

Ok, as I promised here are some photos of my fingers, even though its a little late but I got'em.</end quote></div>

Eeee someone has fingers that look like mine! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

How about children? Does anyone have any pics of their child's clubbed fingers? My ds (8) has clubbing. His two middle toes on each foot and 3 middle fingers on each hand are the worst. They look very similiar to princessjdc. Does anyone know if clubbing corresponds to prognosis at all??? It freaks me out that he has clubbing at only 8<img src="i/expressions/face-icon-small-sad.gif" border="0"> His FEV1 when well is really good though. 126% predicted is his high. Even when sick he's never fallen below 80%. (He has asthma,too).

 

[princessjdc]

I could take pic of my toes, theyre not that clubbed just a tad, some toes you cant even tell, the one you really can tell is the little toe next to the big toe. Its like that on both feet.

 

[anonymous]

Thanks Ender for answering my question. Here is a couple more. Where do you get GSH. I think I would want the oral. How much would a 9 yr old take? Is there any side affects or does it mess up vit levels or anything? Remember this is totally new for me. Is this ideal for anyone to take? God knows I could use more energy too!

Mother of 9yr old boy w cf

 

[anonymous]

Thanks Ender for answering my question. Here is a couple more. Where do you get GSH. I think I would want the oral. How much would a 9 yr old take? Is there any side affects or does it mess up vit levels or anything? Remember this is totally new for me. Is this ideal for anyone to take? God knows I could use more energy too!

Mother of 9yr old boy w cf

 

[Diane]

I get mine from here --> <a target=_blank class=ftalternatingbarlinklarge href="http://www.iherb.com/store/ProductsList.aspx?c=Herbs&cid=l-glutathione
">http://www.iherb.com/store/Pro...d=l-glutathione
</a>
Its the second on down on the left. Here's a link to some more info on gsh --> <a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/research/glutathione.htm">http://members.tripod.com/uvic...search/glutathione.htm</a>

 

[Brad]

My nails must be mild like Emma's
except they are hard enough to be used a paint
scrapers.

My Oldest Brothers used to curv over the
end of his thumb like a eagels beak

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

How about children? Does anyone have any pics of their child's clubbed fingers? My ds (8) has clubbing. His two middle toes on each foot and 3 middle fingers on each hand are the worst. They look very similiar to princessjdc. Does anyone know if clubbing corresponds to prognosis at all??? It freaks me out that he has clubbing at only 8<img src="i/expressions/face-icon-small-sad.gif" border="0"> His FEV1 when well is really good though. 126% predicted is his high. Even when sick he's never fallen below 80%. (He has asthma,too).</end quote></div>

that's what i don't get. I think it has more to do then just 02 levels and fev1. It could also be related to inflammation...what makes me think of that is people with cirhosis of the liver get it as well. I really don't know.

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Thanks Ender for answering my question. Here is a couple more. Where do you get GSH. I think I would want the oral. How much would a 9 yr old take? Is there any side affects or does it mess up vit levels or anything? Remember this is totally new for me. Is this ideal for anyone to take? God knows I could use more energy too!



Mother of 9yr old boy w cf</end quote></div>

GSH seems to be very well tolerated, even at really high levels. Here is a site for information on GSH and the different ways to obtain it.

<a target=_blank class=ftalternatingbarlinklarge href="http://phoenix-cfs.org/Glutathione%20Building%20in%20CFS.htm
">http://phoenix-cfs.org/Glutath...ilding%20in%20CFS.htm
</a>
I would look into the liposomal gsh, as it seems to be the most readily absorbable kind.

I would say anyone could take it. My dad has taken it...and he felt he had more energy. Mandy said it could mess with yeast a bit...and the site i referenced said that you should start taking it slow..

"It is a good idea to proceed slowly at first if glutathione has been depleted for an extended period of time (months to years), because toxins and infections may have been allowed to build up in the absence of sufficient glutathione to keep them under control. If glutathione is then brought up rapidly, the mobilization of toxins can produce a Jarisch Herxheimer reaction, which is an exacerbation of symptoms that can make a person feel very unpleasant"

I can totally attest to that...since starting my supplements. It wasn't a pleasant first 3-4 days, that's for sure.

And for GSH itself, look up glutathione/glutathione cystic fibrosis. You will find tons of articles.

I know doctor Bishop suggested 30mg/pound of body wieght...split into 4 times a day...start slowly though. The good thing about lipoceutical gsh though is that you need a fraction of that...like 1/8 to 1/4 a teaspoon to get the same results. Once my batch of capsule gsh runs out, I will try that...

Good luck, sorry to take away from the original poster...but I guess it's sorta relevant hehe

Kiel