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QUestion about amount of fluid at one time into lungs (GSH based - lung pains)

Faust

New member
Ok this is a tad weird, so Tom or whoever else that knows a good deal regarding supplements and GSh specifically, and especially the recommended amount of fluid into your lungs during one treatment, please speak up.


As many have known I have been doing oregano oil for a long time, and feel great. Even before the oil I would sometimes have "phantom pains" in my lungs, regardless what I felt like at the time congestion wise etc. I never noticed any while just doing the oregano oil neb wise (along with my regular pulmozyme, collistin, etc), but I have been doing 400mg in the morning, and 400mg at night of GSH dissolved in distilled water in my neb.


I recently have been noticing some "phantom pains" like what I described before, in no particular area of my lungs. Now what makes this weird is i'm pretty much totally clear, and after a vest treatment, i'm even more clear. My mucous is extremely thin and very close to clear (it's as close to water as possible considering i'm CF).

Do you think it might be something to do with the GSH, or is it more than likely the amount of fluid I am inhaling into my lungs in one sitting?


Here is what I inhale in the morning<img src="i/expressions/face-icon-small-sad.gif" border="0">all of these are done in pari plus LC nebs) 6 drops of H2 orega into a regule ampule vial of albuterol. 2 dissolved capsules of the L-glutathione plus (has 50mg of bicarbonate added to it) into the pari plus LC neb up to right near the 6 line on the cup (i'm assuming that is for 6ml). Then I do my collistin which is a premade solution (I mix it for a week at a time) then goes into my other pari plus LC cup - When I make the solution I add 5ml to the solution (I believe it's 5ml, could be cc's, but it's marked as five on my syringe, it's basically the entire syringe full). And that is my morning treatment.


Now my nighttime treatment is the same exact thing, except I do one ampule of pulmozyme added to that.


Do you think I might be taking in too much fluid into my lungs at one time? I seriously don't recall any of these phantom pains before doing the GSH. I'm not blaming the GSH, I'm personally thinking that adding another 5-6ml of fluid to my inhalation intake could have been the straw that broke the camels back fluid wise in my lungs. I'm still very clear and productive when I do have something, but i'm just curious. I wonder if there is any recommended amount of fluid level to limit yourself inhalation wise to. Any ideas? As of now, i'm breathing in a ton of fluid, if I were to add hypertonic also, that would be even more crazy.
 

miesl

New member
For future reference... 1 cc = 1 mL. Science lesson for the day from your local chemist.

I don't know if there' a breaking point, but one would assume so.

At Jeremy's worst (when he does Coly):
5 mL (2 mucomyst, 2.5 atrovent, 0.5 albuterol)
5 mL 5% NaCl
~4 mL Coly+water mixture.

Usually it's just the first two.
 

Faust

New member
Ok. So considering i'm a grown man (if the person you were refering to was a child - I dunno), i'm probably not overdoing it water wise in your opinion?
 

Tom

New member
Sean,

It may or may not be attributable to the addition of the inhaled GSH (Yea, I know, great answer.) What if you backed off the GSH to one capsule per session which would be 3ml of solution, or even drop the GSH for a few days. See if it makes a difference. Since GSH is the latest thing you have added, it would be worth a try to see if backing off or removing it alleviates the problem.

Tom
 

Faust

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

Sean,



It may or may not be attributable to the addition of the inhaled GSH (Yea, I know, great answer.) What if you backed off the GSH to one capsule per session which would be 3ml of solution, or even drop the GSH for a few days. See if it makes a difference. Since GSH is the latest thing you have added, it would be worth a try to see if backing off or removing it alleviates the problem.



Tom</end quote></div>

Well yeah, but have you heard anything about too much fluid inhalation at one time?
 

anonymous

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

Well yeah, but have you heard anything about too much fluid inhalation at one time?</end quote></div>



Yeah, its called drowning. :)
 

Faust

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

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



Well yeah, but have you heard anything about too much fluid inhalation at one time?</end quote></div>







Yeah, its called drowning. :)</end quote></div>


I said you are only my Squire in sarcasm, not my equal! Now grab the brasso and shine my platemail you! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

EnergyGal

New member
My thoughts are

why are you taking the inhalation treatments at the same time? Why are you taking collistin if you are so clear? IT is not good to over do antibiotics if you do not need them.
I am confused with your protocols because if you are so clear why are you doing so much?

You are never going to know what is helping you if you are doing so many treatments
just my opinion (jmo)
 

Tom

New member
I have not heard or read anything about inhaling too much fluid. I can ask around on other boards that I frequent. What is the total mls that you are inhaling during one session.

Tom
 

miesl

New member
I have to agree with Risa. Jeremy stopped doing the month on/off schedule with Coly when he started feeling better after his last IV set two years ago. He only does a month now when he starts to feel worse. We even had the doctor's blessing to do so.
 

Faust

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

My thoughts are



why are you taking the inhalation treatments at the same time? Why are you taking collistin if you are so clear? IT is not good to over do antibiotics if you do not need them.

I am confused with your protocols because if you are so clear why are you doing so much?



You are never going to know what is helping you if you are doing so many treatments

just my opinion (jmo)</end quote></div>


Well I was on the collistamethate even when I got real sick. Personally I wouldn't mind getting off of it, but I figure even though I think it was the oregano oil that has made me how I am now, why mess with something when nothing is broken? Also my doc told me that due to how collistamethate is, your bacteria can't grow resistant to it. Standard antibiotics, I would agree with. But as long as my bugs can't get resistant to it, I shouldn't be concerned.


I was on pulmozyme, albuterol, and tobi, then I showed a resistance to tobramycin due to being on tobi for so long (one month on, one month off for a few years), then the doc put me on collistamethate one month on - one month off. I got REAL sick when doing my firearm training (exhaustion I think), then they moved me to collistamethate every day. Stayed generally sick after my hospital mass IV nukeage. Started the OO in addition to those meds, and cleared up extremely fast.

The newest aresol i'm doing is the GSH. While I will always have CF till my defect is corrected on a genetic level, I realize my different nebs are for different purposes. Even though I think the collistamethate stopped working a long time ago, i'm a tad apprehensive to get off of it due to the headache insurance wise it took to finally get them to pay for it for me.

I fully agree that you shouldn't be on antibiotics for fear of resistances etc, but doc told me this doesn't work that way. I'm just afraid to rock the boat cause i'm doing so well atm.

As for amount of fluid per session...Just guessing from memory, but...3-4cc (for the one ampule of albuterol + 6 drops of OO) + 5-6cc (for the collistin) + 5-6cc (for GSH) for the morning regimen, then same thing at night but add a pulmozyme ampule so maybe 3-4cc?

So per morning session= 16cc, then 20cc at night. So total of 36cc daily fluid inhalation wise. Of course that is a rough estimate, because i'm not sure of the CC's in the individual ampules, but I know it's less than when I do my GSH.


Seems like a good amount of fluid entering the lungs, so i'm wondering if my general phantom pains that I get here and there now is attributed to that, or somehow the GSH. Though it's possible it's just the GSH chemical composition wise, i'm pretty tough lung wise, and OO never bothered me in this way, and OO is much more irritant than the GSH.
 

Tom

New member
I asked around and none of people who responded had heard of this or the max amount of inhaled solutions during one session. Are you still having the pains?

Tom
 

Faust

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

I asked around and none of people who responded had heard of this or the max amount of inhaled solutions during one session. Are you still having the pains?



Tom</end quote></div>


Mostly when i'm in bed sleeping. They haven't gotten bad enough for me to discontinue the GSH though. I wanted to see if my already improved self improved further on the GSH. Who knows. Maybe i'm doing too little GSH to have any real improvement? No way on earth I could do the amount (6000mg+) that has been recommended for my size. That would be a very large amount of cash per month just for one supplement @ 35 dollars a bottle. I would be ordering 5+ bottles at a time (if i stayed with the type they recommend to neb, cause it's only 200mg per capsule). So that is out of the question for me. I havent seen any real stark positive symptoms in my condition past what the OO has shown to think the GSh is doing anything real crazy good for me. I'm contemplating if I should reorder another bottle for next month.
 

anonymous

New member
The 6000mg amount would not be all inhaled GSH. The amount that you are currently inhaling is what many other people do and see benefit from it. However, none of them are currently on OO. I don't know if you would notice any real difference with adding the GSH since your lung function is so good. You know your body best and what you can tolerate.

Tom
 

Faust

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

The 6000mg amount would not be all inhaled GSH. The amount that you are currently inhaling is what many other people do and see benefit from it. However, none of them are currently on OO. I don't know if you would notice any real difference with adding the GSH since your lung function is so good. You know your body best and what you can tolerate.



Tom</end quote></div>


Ah ok, heh I was going to say man, that would be a rediculous amount of GSH to do daily. Hell even if i saved the 500 or 600mg GSH orally to help reach that mg goal, that would still be fairly costly. But yeah, I feel so great under the OO, I doubt anything short of a genetic cure or something else to 100% make me asymptomatic would be noticed. Probably just wasting money I guess, but I suppose it's getting some help to my lungs. I'm still on 1800mg of NAC daily too, so who knows.


Isn't life great as a guinea pig?
 
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