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First visit since oregano
- Thread starter Ender
- Start date
I could have been classified as a "bleeder" a while back. I would have fairly frequent bleeds, with two in particular that were VERY bad and actually scared me, and I thought I might have to go to the ER. Taking vitamin K massively lowered the duration/severity, and frequency of my bleeds. Vitamin K will never fully protect you from bleeds as long as you have bacteria causing infection, and white blood cells congregating in those areas of infection. Of course the best approach is to not have infection in the first place, so inevitably your bleeds go away, instead of not doing anything and just relying on clotting agents. I would have one or two bleeds a month almost guaranteed, sometimes three, regardless what antibiotic I was on. Vitamin K helped to reduce the severity and length of them, but never fully kept them at bay. So I would consider myself a fairly regular "bleeder" I suppose (compared to other cystics I knew). I have been on oregano oil in various forms for 5, nearly 6 months. Out of all that time, I have had only 2 bleeds. Both of them were after I had drank heavily for a couple days back to back, and been in very smoky areas while doing so. While infection and then inflamation is usually the reason for bleeds, self abuse via drinking heavily (dry you out) for a prolonged period of time + exposure to heavy smoke over a prolonged time can do it with no real infection present. Going for most of my life with regular bleeds, then only having 2 bleeds within 5-6 months with no other treatments present besides me treating myself with the oregano oil, would lend credit to the oil being much more of a helpful substance than a harming substance.
Of course this isn't a universal application. All people are different with potentially vastly different lungs/body chemisty/body flora. And that is why I have 100% from the begining told others to do their own research, ask their doctors, and if they decide to give it a real try, to try it for a month if no negative symptoms present themselves during treatment. If after a month you note considerable improvement in your overall health and how you feel, consider using the oil as part of a regular maintenance. And then have regular doctor visits where you get checked up and do full screening blood work to make sure nothing is wrong on the inside.
Of course this isn't a universal application. All people are different with potentially vastly different lungs/body chemisty/body flora. And that is why I have 100% from the begining told others to do their own research, ask their doctors, and if they decide to give it a real try, to try it for a month if no negative symptoms present themselves during treatment. If after a month you note considerable improvement in your overall health and how you feel, consider using the oil as part of a regular maintenance. And then have regular doctor visits where you get checked up and do full screening blood work to make sure nothing is wrong on the inside.
I could have been classified as a "bleeder" a while back. I would have fairly frequent bleeds, with two in particular that were VERY bad and actually scared me, and I thought I might have to go to the ER. Taking vitamin K massively lowered the duration/severity, and frequency of my bleeds. Vitamin K will never fully protect you from bleeds as long as you have bacteria causing infection, and white blood cells congregating in those areas of infection. Of course the best approach is to not have infection in the first place, so inevitably your bleeds go away, instead of not doing anything and just relying on clotting agents. I would have one or two bleeds a month almost guaranteed, sometimes three, regardless what antibiotic I was on. Vitamin K helped to reduce the severity and length of them, but never fully kept them at bay. So I would consider myself a fairly regular "bleeder" I suppose (compared to other cystics I knew). I have been on oregano oil in various forms for 5, nearly 6 months. Out of all that time, I have had only 2 bleeds. Both of them were after I had drank heavily for a couple days back to back, and been in very smoky areas while doing so. While infection and then inflamation is usually the reason for bleeds, self abuse via drinking heavily (dry you out) for a prolonged period of time + exposure to heavy smoke over a prolonged time can do it with no real infection present. Going for most of my life with regular bleeds, then only having 2 bleeds within 5-6 months with no other treatments present besides me treating myself with the oregano oil, would lend credit to the oil being much more of a helpful substance than a harming substance.
Of course this isn't a universal application. All people are different with potentially vastly different lungs/body chemisty/body flora. And that is why I have 100% from the begining told others to do their own research, ask their doctors, and if they decide to give it a real try, to try it for a month if no negative symptoms present themselves during treatment. If after a month you note considerable improvement in your overall health and how you feel, consider using the oil as part of a regular maintenance. And then have regular doctor visits where you get checked up and do full screening blood work to make sure nothing is wrong on the inside.
Of course this isn't a universal application. All people are different with potentially vastly different lungs/body chemisty/body flora. And that is why I have 100% from the begining told others to do their own research, ask their doctors, and if they decide to give it a real try, to try it for a month if no negative symptoms present themselves during treatment. If after a month you note considerable improvement in your overall health and how you feel, consider using the oil as part of a regular maintenance. And then have regular doctor visits where you get checked up and do full screening blood work to make sure nothing is wrong on the inside.
Message for Sean Davies
My daughter is 2 years old and picked up PA when she was 10 months old. Took Cipro orally for 3 weeks, and Colomycin inhaled through neb for 4 months. She was then clear on cough swabs. PA showed up again exactly 12 months later. Took Cipro again for 3 weeks and has been on neb since last October. Saw her Consultant for annual check up which was good, but PA showed up again on latest cough swab. It's really freakin me out! Started Cipro again yesterday and has to take it for 3 weeks, also continuing neb. As you can imagine all this is new to me and I am really worried! Been reading your messages now for a couple of months, but decided 2 join yesterday. Find your messages so inspiring! Hope this message makes sense. Can you give me any tips please? Also I am scared that she might have to have IVs if PA doesn't clear up using neb. She is at a really awkward age - terrible twos and all that! Just seem to be going round in a viscious circle at moment. Phew!
Look forward to hearing from you
Charlotte
Mother of 2 beautiful daughters - eldest 4 years (without CF) and youngest 2 years (with CF)<img src="i/expressions/oxygen.gif" border="0">
My daughter is 2 years old and picked up PA when she was 10 months old. Took Cipro orally for 3 weeks, and Colomycin inhaled through neb for 4 months. She was then clear on cough swabs. PA showed up again exactly 12 months later. Took Cipro again for 3 weeks and has been on neb since last October. Saw her Consultant for annual check up which was good, but PA showed up again on latest cough swab. It's really freakin me out! Started Cipro again yesterday and has to take it for 3 weeks, also continuing neb. As you can imagine all this is new to me and I am really worried! Been reading your messages now for a couple of months, but decided 2 join yesterday. Find your messages so inspiring! Hope this message makes sense. Can you give me any tips please? Also I am scared that she might have to have IVs if PA doesn't clear up using neb. She is at a really awkward age - terrible twos and all that! Just seem to be going round in a viscious circle at moment. Phew!
Look forward to hearing from you
Charlotte
Mother of 2 beautiful daughters - eldest 4 years (without CF) and youngest 2 years (with CF)<img src="i/expressions/oxygen.gif" border="0">
Message for Sean Davies
My daughter is 2 years old and picked up PA when she was 10 months old. Took Cipro orally for 3 weeks, and Colomycin inhaled through neb for 4 months. She was then clear on cough swabs. PA showed up again exactly 12 months later. Took Cipro again for 3 weeks and has been on neb since last October. Saw her Consultant for annual check up which was good, but PA showed up again on latest cough swab. It's really freakin me out! Started Cipro again yesterday and has to take it for 3 weeks, also continuing neb. As you can imagine all this is new to me and I am really worried! Been reading your messages now for a couple of months, but decided 2 join yesterday. Find your messages so inspiring! Hope this message makes sense. Can you give me any tips please? Also I am scared that she might have to have IVs if PA doesn't clear up using neb. She is at a really awkward age - terrible twos and all that! Just seem to be going round in a viscious circle at moment. Phew!
Look forward to hearing from you
Charlotte
Mother of 2 beautiful daughters - eldest 4 years (without CF) and youngest 2 years (with CF)<img src="i/expressions/oxygen.gif" border="0">
My daughter is 2 years old and picked up PA when she was 10 months old. Took Cipro orally for 3 weeks, and Colomycin inhaled through neb for 4 months. She was then clear on cough swabs. PA showed up again exactly 12 months later. Took Cipro again for 3 weeks and has been on neb since last October. Saw her Consultant for annual check up which was good, but PA showed up again on latest cough swab. It's really freakin me out! Started Cipro again yesterday and has to take it for 3 weeks, also continuing neb. As you can imagine all this is new to me and I am really worried! Been reading your messages now for a couple of months, but decided 2 join yesterday. Find your messages so inspiring! Hope this message makes sense. Can you give me any tips please? Also I am scared that she might have to have IVs if PA doesn't clear up using neb. She is at a really awkward age - terrible twos and all that! Just seem to be going round in a viscious circle at moment. Phew!
Look forward to hearing from you
Charlotte
Mother of 2 beautiful daughters - eldest 4 years (without CF) and youngest 2 years (with CF)<img src="i/expressions/oxygen.gif" border="0">
First thing: First not all hemoptysis is caused by active infections. I am an example of that. I have an area of my lungs that the capillaries are very weak from previous damage doen by infections. Tho I have had bleeds during infection, I also have had bleeds from being overly tired, too much caffine, straining physically & stress. I take ADEK & an additional Vitamin K supplement. I address this since the OO does have the thinning element in it. I understand the concept of keep the bugs under control & the control of the bleeds should follow, but its not always that easy.
Secondly: To Charlotte>>The fact that child has begun culturing pseudomonas on a regular basis or somewhat of a regular basis is not uncommon. Tho it needs to be kept on top of, its not the end of the world. Many of us have cultured pseudomonas for years, but in whole do well unless a flare up occurs (more congested, fever, increased cough, weight loss) requiring meds which could include oral &/or ivs. Not everyone that cultures pseudomonas automatically goes on ivs. It does depend on the doctor a lot, but there is always the worry of a CFer becoming resistance to antibiotics so I am mentioning this to make sure you are aware that your child can culture pseudomonas, but doesnt necessarily hacve to be "sick"!
Secondly: To Charlotte>>The fact that child has begun culturing pseudomonas on a regular basis or somewhat of a regular basis is not uncommon. Tho it needs to be kept on top of, its not the end of the world. Many of us have cultured pseudomonas for years, but in whole do well unless a flare up occurs (more congested, fever, increased cough, weight loss) requiring meds which could include oral &/or ivs. Not everyone that cultures pseudomonas automatically goes on ivs. It does depend on the doctor a lot, but there is always the worry of a CFer becoming resistance to antibiotics so I am mentioning this to make sure you are aware that your child can culture pseudomonas, but doesnt necessarily hacve to be "sick"!
First thing: First not all hemoptysis is caused by active infections. I am an example of that. I have an area of my lungs that the capillaries are very weak from previous damage doen by infections. Tho I have had bleeds during infection, I also have had bleeds from being overly tired, too much caffine, straining physically & stress. I take ADEK & an additional Vitamin K supplement. I address this since the OO does have the thinning element in it. I understand the concept of keep the bugs under control & the control of the bleeds should follow, but its not always that easy.
Secondly: To Charlotte>>The fact that child has begun culturing pseudomonas on a regular basis or somewhat of a regular basis is not uncommon. Tho it needs to be kept on top of, its not the end of the world. Many of us have cultured pseudomonas for years, but in whole do well unless a flare up occurs (more congested, fever, increased cough, weight loss) requiring meds which could include oral &/or ivs. Not everyone that cultures pseudomonas automatically goes on ivs. It does depend on the doctor a lot, but there is always the worry of a CFer becoming resistance to antibiotics so I am mentioning this to make sure you are aware that your child can culture pseudomonas, but doesnt necessarily hacve to be "sick"!
Secondly: To Charlotte>>The fact that child has begun culturing pseudomonas on a regular basis or somewhat of a regular basis is not uncommon. Tho it needs to be kept on top of, its not the end of the world. Many of us have cultured pseudomonas for years, but in whole do well unless a flare up occurs (more congested, fever, increased cough, weight loss) requiring meds which could include oral &/or ivs. Not everyone that cultures pseudomonas automatically goes on ivs. It does depend on the doctor a lot, but there is always the worry of a CFer becoming resistance to antibiotics so I am mentioning this to make sure you are aware that your child can culture pseudomonas, but doesnt necessarily hacve to be "sick"!
@jazzysmon: Yeah, didn't reread my message, but I didn't mean that every bleed comes about due to infection, just that more times than not, if there aren't any physical stressors such as smoke inhalation, exhaustion, bad areas of lungs due to bad infections, and similar stressors, then the bleeds are usually due to infection and inflamation. As I mentioned, after drinking heavily back to back and especially while being in smoke environments, It was easy for me to have a lung bleed. I have been on OO before and have had a normal cut or picked my thumb/lip till it bled before, and not been on vitamin K, and it did bleed a bit more than it would have before I was on OO. While on vitamin K daily, and on OO, my clotting appears to be normal (pre OO and not on vit k).
It's all a benefit vs risk issue to me. I get MUCH more reward out of doing the oil than the very slight risk due to blood thinning. Considering the blood thinning is equivalent to taking aspirin (if you take the oregano oil is reasonable amounts).
It's all a benefit vs risk issue to me. I get MUCH more reward out of doing the oil than the very slight risk due to blood thinning. Considering the blood thinning is equivalent to taking aspirin (if you take the oregano oil is reasonable amounts).
@jazzysmon: Yeah, didn't reread my message, but I didn't mean that every bleed comes about due to infection, just that more times than not, if there aren't any physical stressors such as smoke inhalation, exhaustion, bad areas of lungs due to bad infections, and similar stressors, then the bleeds are usually due to infection and inflamation. As I mentioned, after drinking heavily back to back and especially while being in smoke environments, It was easy for me to have a lung bleed. I have been on OO before and have had a normal cut or picked my thumb/lip till it bled before, and not been on vitamin K, and it did bleed a bit more than it would have before I was on OO. While on vitamin K daily, and on OO, my clotting appears to be normal (pre OO and not on vit k).
It's all a benefit vs risk issue to me. I get MUCH more reward out of doing the oil than the very slight risk due to blood thinning. Considering the blood thinning is equivalent to taking aspirin (if you take the oregano oil is reasonable amounts).
It's all a benefit vs risk issue to me. I get MUCH more reward out of doing the oil than the very slight risk due to blood thinning. Considering the blood thinning is equivalent to taking aspirin (if you take the oregano oil is reasonable amounts).
I would like to try this OO but as I have varicose veins I'm not sure if I want to. I did take vitamin K but they now have to inject it because my body won?t absorb it through the stomach. I still bleed and it can be quite large amount sometimes. I?ve been in hospital because if these bleeds. I?ll also be going to hospital for an aneurism Tuesday because of the recent bleed. Hence the reason I?m wary of taking the OO.
I would like to try this OO but as I have varicose veins I'm not sure if I want to. I did take vitamin K but they now have to inject it because my body won?t absorb it through the stomach. I still bleed and it can be quite large amount sometimes. I?ve been in hospital because if these bleeds. I?ll also be going to hospital for an aneurism Tuesday because of the recent bleed. Hence the reason I?m wary of taking the OO.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Burn</b></i><br>I would like to try this OO but as I have varicose veins I'm not sure if I want to. I did take vitamin K but they now have to inject it because my body won?t absorb it through the stomach. I still bleed and it can be quite large amount sometimes. I?ve been in hospital because if these bleeds. I?ll also be going to hospital for an aneurism Tuesday because of the recent bleed. Hence the reason I?m wary of taking the OO.<hr></blockquote>
I really don't know what to tell you man. When it comes to people that are way low PFT's and on the list for a transplant or about to get one soon, or just got one, or very young children (under 10), or people such as yourself with such major problems, i'm always very apprehensive to recommend anything...Even something as benign as eating more corn flakes. I'm not giving any recommendations to you due to your special circumstances. If i were you, (and i'm only speaking that if I were literally you in your situation), and I didn't have an aneurism, I would try it for a little while to see what happens. But then again, you have an aneurism, so that changes that. I personally wouldn't know what to do in your situation. Maybe if you get your bleeding under control and they take care of your aneurism, then consider it.
I really don't know what to tell you man. When it comes to people that are way low PFT's and on the list for a transplant or about to get one soon, or just got one, or very young children (under 10), or people such as yourself with such major problems, i'm always very apprehensive to recommend anything...Even something as benign as eating more corn flakes. I'm not giving any recommendations to you due to your special circumstances. If i were you, (and i'm only speaking that if I were literally you in your situation), and I didn't have an aneurism, I would try it for a little while to see what happens. But then again, you have an aneurism, so that changes that. I personally wouldn't know what to do in your situation. Maybe if you get your bleeding under control and they take care of your aneurism, then consider it.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Burn</b></i><br>I would like to try this OO but as I have varicose veins I'm not sure if I want to. I did take vitamin K but they now have to inject it because my body won?t absorb it through the stomach. I still bleed and it can be quite large amount sometimes. I?ve been in hospital because if these bleeds. I?ll also be going to hospital for an aneurism Tuesday because of the recent bleed. Hence the reason I?m wary of taking the OO.<hr></blockquote>
I really don't know what to tell you man. When it comes to people that are way low PFT's and on the list for a transplant or about to get one soon, or just got one, or very young children (under 10), or people such as yourself with such major problems, i'm always very apprehensive to recommend anything...Even something as benign as eating more corn flakes. I'm not giving any recommendations to you due to your special circumstances. If i were you, (and i'm only speaking that if I were literally you in your situation), and I didn't have an aneurism, I would try it for a little while to see what happens. But then again, you have an aneurism, so that changes that. I personally wouldn't know what to do in your situation. Maybe if you get your bleeding under control and they take care of your aneurism, then consider it.
I really don't know what to tell you man. When it comes to people that are way low PFT's and on the list for a transplant or about to get one soon, or just got one, or very young children (under 10), or people such as yourself with such major problems, i'm always very apprehensive to recommend anything...Even something as benign as eating more corn flakes. I'm not giving any recommendations to you due to your special circumstances. If i were you, (and i'm only speaking that if I were literally you in your situation), and I didn't have an aneurism, I would try it for a little while to see what happens. But then again, you have an aneurism, so that changes that. I personally wouldn't know what to do in your situation. Maybe if you get your bleeding under control and they take care of your aneurism, then consider it.
Thanks SeanDavis for your thoughts on the matter. I have enjoyed reading all you info on this OO. Yes maybe when the bleeding is under control, the OO would be something to try for the future. But until the bleeding is under control I think I should get myself fit before trying new things <img src="i/expressions/face-icon-small-wink.gif" border="0">
Thanks SeanDavis for your thoughts on the matter. I have enjoyed reading all you info on this OO. Yes maybe when the bleeding is under control, the OO would be something to try for the future. But until the bleeding is under control I think I should get myself fit before trying new things <img src="i/expressions/face-icon-small-wink.gif" border="0">