Cutting Back On Hemoptasis

[CowTown]

For all those dealing with hemoptasis right now, I see it's effecting so many on this forum lately, do any of you take Lysine on a regular basis? I thought I heard that Lysine helps to control or reduce hemoptasis.

So I was wondering if anyone can say that isn't so, or does it help you?

Since I started taking oral oo, I also started Lysine (500mg) on a regular basis to help ward against blood thining and getting hemoptasis. I haven't had it yet, but I have no idea if I'm preventing it either.

Any thoughts?

 

[Faust]

Well, i've been on OO under tongue and inhaled for a while now (since around august or september last year?). Before OO I would usually get a lung bleed, maybe once a month, at it's best, once every two months. Since I have been on OO I have had only two slight bleeds, and I feel one was due to OO and clearance getting rid of some old plugs I had (it wasn't fresh blood). The second I feel was due to me abusing myself in a smokey environment a few nights back to back. Aside from those two, I haven't had a bleed since (has been a real long time now).


Aside from what has been discussed in here, I think all CF's should also be on a daily vitamin K supplement. It won't stop the root cause of bleeding, but it should reduce the severity and length of the bleed.

 

[anonymous]

I second the Vit K thing. Make sure you are getting enough or even try adding some additional. I have read that if you supplement a lot of Vit A and Vit E that this will hurt your Vit K production, so you need to take even more. For instance, if you drink a lot of nutritional drinks or eat a lot of nutritional bars, they tend to have Vit A and E, but not always equivlant % of Vit K.

Also, I think some of the people having bleeds may be on some form of OO, as has been pointed out in the past on these forums, OO has shown to cause blood thinning. Another reason to check/increase your Vit K.

I am not sure about Lysine, but I'd increase my Vit K first.

Brian

 

[anonymous]

I was wondering what is OO. My 22 year old son has CF but I have never heard of this. ?

Roxanne

 

[Faust]

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

I second the Vit K thing. Make sure you are getting enough or even try adding some additional. I have read that if you supplement a lot of Vit A and Vit E that this will hurt your Vit K production, so you need to take even more. For instance, if you drink a lot of nutritional drinks or eat a lot of nutritional bars, they tend to have Vit A and E, but not always equivlant % of Vit K.



Also, I think some of the people having bleeds may be on some form of OO, as has been pointed out in the past on these forums, OO has shown to cause blood thinning. Another reason to check/increase your Vit K.



I am not sure about Lysine, but I'd increase my Vit K first.



Brian</end quote></div>



Yeah OO has the same general blood thinning properties as aspirin (thats what the sources have said that I have read). Of course if you go strong doseage on it, just like if you say, took 8 aspirin, you can have more pronounced thinning, which can be counteracted with a strong vitamin K supplement. I inhale 7-8 drops per session with albuterol in my neb, and only use the stuff under my tongue if I start to feel a sore throat come on or something sick related in general (very rare). I take a strong multi vitamin/mineral (megamen from GNC) that has some vitamin K in it, then i take a regular vitamin K supplement that is stronger. Considering the amount of OO I take and the amount of vitamin K I take on a daily basis, it seems to counteract each other, and my clotting is normal. In the past on no or very light vitamin k and heavy OO, I have noticed some obvious thinning. Now i'm fine, and have had several cuts and so forth to evaluate it.


It's just like anything else, if you take a substance to benefit you in one way, and it's worth taking it for those benefits, but it has a slight downside, and there is something out there to counteract that downside that isn't harmful, you should take that also.

 

[CowTown]

Sean, I don't see anything in your signature. Just this link:
<a target=_blank class=ftalternatingbarlinklarge href="http://img77.imageshack.us/my....age=funny1yq.gif">http://img77.imageshack.us/my....age=funny1yq.gif</a>
which takes me nowhere.

I think you need to add the brackets to get an image to show.

Do see some animated gif that I don't?

 

[Faust]

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

Sean, I don't see anything in your signature. Just this link:

<a target=_blank class=ftalternatingbarlinklarge href="http://img77.imageshack.us/my....age=funny1yq.gif">http://img77.imageshack.us/my....age=funny1yq.gif</a>

which takes me nowhere.



I think you need to add the brackets to get an image to show.



Do see some animated gif that I don't?</end quote></div>



Heh it was that little awesome dancing black kid animated gif. The site won't show animated gifs, and I was too lazy to change it. I'll change it to something before too long, but i'm lazy and on day offs I just want to lounge <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CowTown]

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

I was wondering what is OO. My 22 year old son has CF but I have never heard of this. ?

Roxanne</end quote></div>


Hi Roxanne,

OO stands for Oil of Oregano. Sean Davis exposed all of us to this alternative therapy for cf bacteria. If you do a search for it on this site, you'll find a million threads on it. Or go to the Supplements threads and look at the "Super Duper Supplement Thread". There's alot of info in there too.

Some people are very cautious of using it on here, and others are using it.

 

[NoExcuses]

.

 

[Faust]

From what I have learned though, the only way to drastically cut back on hemoptysis (given the obvious of not being around irritants like heavy smoke etc) is to directly attack inflamation and reduce your lung bugs that eat away at your lungs. Dietary supplements like vitamin K and lysene can help the severity and duration, but nothing seems to target the accual frequency like lowering the bugs and especially stopping the inflamation.

 

[CowTown]

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

I have read that if you supplement a lot of Vit A and Vit E that this will hurt your Vit K production, so you need to take even more.

I am not sure about Lysine, but I'd increase my Vit K first.

Brian</end quote></div>



Brian,
I'm wondering, my doctor recently put me on extra Vit A only because my recent blood tests showed that I was low. I already take extra Vit E which helps reduce my dry skin. So, based on what you said....I need extra Vit K. But if my Vit K levels look good in a blood test, why would I need more?

How do you base it or figure out what you need (Vitamin level wise) on top of a blood test? My doctor said my other levels were fine. Just wondering.

 

[Faust]

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

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



I have read that if you supplement a lot of Vit A and Vit E that this will hurt your Vit K production, so you need to take even more.



I am not sure about Lysine, but I'd increase my Vit K first.



Brian</end quote></div>







Brian,

I'm wondering, my doctor recently put me on extra Vit A only because my recent blood tests showed that I was low. I already take extra Vit E which helps reduce my dry skin. So, based on what you said....I need extra Vit K. But if my Vit K levels look good in a blood test, why would I need more?



How do you base it or figure out what you need (Vitamin level wise) on top of a blood test? My doctor said my other levels were fine. Just wondering.</end quote></div>


Well because you aren't a "normal" person, so many of those "normal" blood levels don't necessarily apply to you. CF's need extra vitamin K to help with their hemoptysis, normal people do not because they don't get chronic hemoptysis. Don't think by taking an extra vitamin K supplement, even with "normal" levels showing in your blood will do anything bad to you. You would have to take a pretty large amount to have something bad happen to you. Same goes for blood thinners. Now if you were real old and had issues with heart attacks or strokes, yeah, be careful.

 

[anonymous]

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

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



I have read that if you supplement a lot of Vit A and Vit E that this will hurt your Vit K production, so you need to take even more.



I am not sure about Lysine, but I'd increase my Vit K first.



Brian</end quote></div>







Brian,

I'm wondering, my doctor recently put me on extra Vit A only because my recent blood tests showed that I was low. I already take extra Vit E which helps reduce my dry skin. So, based on what you said....I need extra Vit K. But if my Vit K levels look good in a blood test, why would I need more?



How do you base it or figure out what you need (Vitamin level wise) on top of a blood test? My doctor said my other levels were fine. Just wondering.</end quote></div>


Kelly, being in the "normal" range for Vit K and others is where you should begin from, unfortunately need some help getting there to begin with. I would suggest doing a google for Vit K and read some stuff and then see if it makes sense to suppliment some extra. Look at Vit C, your levels are probably fine for vit c, but many people try to take more of that especially when they are sick to boost the immune system. Think of Vit K in that manner, you are taking some extra to help with the things that Vit K is good at doing. Now, I am not suggesting going crazy or anything. Anyway, I suggest using google, its a good source for searching and reading about these things.

Brian

 

[Diane]

I've been taking L-Lysine for hemoptysis for a bit over a year now. It has helped with the frequency of hemoptysis, but unfortunately i do still get hemoptysis. Its possible im not taking enough of it....Im currently taking 4000 mg. per day ( 1000 mg 4 x a day). I remember when i started out taking 3000 mg. per day it didnt seem to help at all, but with the 4000 mg, i did notice a difference ..........hmmmmmm maybe 5000 mg. would be the trick, i dont know.

 

[CowTown]

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

hmmmmmm maybe 5000 mg. would be the trick, i dont know.</end quote></div>


Wow, I'm just taking 500 mg. If it's been working for you, that's awesome. I just didn't know if it helped or if it's a coincidence that I haven't gotten hemoptasis. Hard to tell I guess.

 

[anonymous]

My doc (houston) has me on Amicar for hemoptasis. I take it as needed, essentially if I see some streaking, I start taking it. Seems to be fairly effective. Believe it is a medicine for hemophiliacs (replaced that stuff you used to be able to get and mix with orange juice).

Anyone else use Amicar?

 

[anonymous]

My doc (houston) has me on Amicar for hemoptasis. I take it as needed, essentially if I see some streaking, I start taking it. Seems to be fairly effective. Believe it is a medicine for hemophiliacs (replaced that stuff you used to be able to get and mix with orange juice).

Anyone else use Amicar?

 

[anonymous]

My doc (houston) has me on Amicar for hemoptasis. I take it as needed, essentially if I see some streaking, I start taking it. Seems to be fairly effective. Believe it is a medicine for hemophiliacs (replaced that stuff you used to be able to get and mix with orange juice).

Anyone else use Amicar?

 

[anonymous]

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

My doc (houston) has me on Amicar for hemoptasis. I take it as needed, essentially if I see some streaking, I start taking it. Seems to be fairly effective. Believe it is a medicine for hemophiliacs (replaced that stuff you used to be able to get and mix with orange juice).



Anyone else use Amicar?</end quote></div>


What dosage and for how long to you take this drug after you have hemoptysis? Over a course of a year how many times have you been on this drug? Thanks for sharing.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

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

My doc (houston) has me on Amicar for hemoptasis. I take it as needed, essentially if I see some streaking, I start taking it. Seems to be fairly effective. Believe it is a medicine for hemophiliacs (replaced that stuff you used to be able to get and mix with orange juice).



Anyone else use Amicar?</end quote></div>


What dosage and for how long to you take this drug after you have hemoptysis? Over a course of a year how many times have you been on this drug? Thanks for sharing.<img src="i/expressions/face-icon-small-smile.gif" border="0">