My sortness of breach is getting worse.

That is very interesting, Debra. I wonder who told you that and for how long that would be the case?  Eventually the stem cells would be less vunerable, I would think.  Anyway, the issue would be to avoid the pseudomonas infection.  Preventing a build-up of mucus is very important here, according to my pulmonologist.  Between the Smart Vest, the nebulizer and some natural supplements, such as colloidal silver and oil of oregano, I hope to be able to do that.  I have not looked into immunotherapy but I am still looking into the stem cell therapy but with less urgency now.  Best wishes to you too and thanks for your response.

Hi Irene:

It is difficult to say how the glutathione helped me.  All I can say is that when it was the only thing I was nebulizing I was much better but that was also several years ago.  Are you getting Glutathione Inhalation from a health practitioner as I was?  Since I cannot get that any more, I now use a capsule of Glutathione Plus in a sterile salt solution.  Let me know how you do with itl

Louise

 

I had not heard that before, Irene, about putting garlic in the nebulizer. Thanks for the tip.  Two other things I do about avoiding infections with PA is swallowing colloidal silver and oil of oregano.  I do both or either for a week or two and then stop.  The thing to do seems to be to avoid mucus building up.  I recently starting using a smart vest, which shakes the mucus loose but then you still have to nebulize to get it out.  I feel I breathe more easily after a treatment but it is rather cumbersome and time-consuming.  It is supposed to especially help in the long run so I am going to make an effort to keep doing it.

It seems both of us are on the same wavelength in using both conventional and alternative ways to try and deal with the Bx.  Good luck to you and keep at it.

Louise

 

I have had a percussion vest for about 10 years. I find it very helpful. I use it while I use my nebulizer, thus cutting down on the time.

I received mine from Hill-Rom (I'm retired now, but my job's insurance paid for 90% of the cost).  What I found out about Hill-Rom is that the machine has a life time guarantee. I have had to replace the machine once. They delivered the new one and I placed the old one in the same packaging and placed it on my doorstep 3 days later, per instructions. It was picked up then by FedEx. At no cost to me. I also had to have the vest and tubes replaced, at no cost to me.

I thought that was excellent service from Hill-Rom.

Beth

Louise I must point out that my chest consultant is not happy with my inhaling anything that hasn't been prescribed.  

I've had bronchiectasis for most of my 67 years with pseudomonas these last  four years and I just want to avoid endless rounds of antibiotics.  I try to keep my lungs as clear as possible and my immune system healthy.  A good diet, no processed food.  I also take oregano oil, olive leaf extract, liposomal Vit C, liposomal Vit D, turmeric, sometimes colloidal silver.  It's all trial and error but I feel healthier now than I've ever done.  Retiring from work has helped too,

Breathing's never been much of a problem though; I play golf 3-4 times a week in the summer although struggle a bit with steep hills.

Irene

Hi Beth:

I have just been trying to use it at the same time too.  It does save time but I feel I get more mucus out when I do it subsequently.  My docor ordered the Smart Vest through Medicare and with my coinsurance it did not cost me a penny.  I chose the camouflage pattern and it looks nice.  It is encouraging that you have been using it that long and find it helpful.  I will keep trying to get in the habit.

Bless you that you are doing as well as you are after having Bx for most of your life.  I agree that it is important to eat as well as you can.  I am vegetarian and eat mostly organic foods as well as take a lot of the supplements you are taking. Working out is also really important, I think.  Even though it may be hard at times with the breathing.  I have had some bouts of PA but a course of Cipro has usually cured it.  I have to be very vigilent with the supplements and eliminating mucus to prevent from getting it again.  Over time the amount of mucus I produce seems to have multiplied enormously.  Do you find that?  I also find it hard to keep on weight.  How about you?

Good to hear from you.

Louise

Sorry for late reply Louise, with the warmer weather we've been having the garden's gone bonkers.  Plus there's more golf to play!

I don't find my mucus has increased, quite the opposite, although there's still too much of the stuff.

When I developed pseudomonas approx four years ago I completely changed my diet.  No sugar, no wheat, no dairy, no processed foods, and I started taking oil of oregano.  I lost a stone in 2 weeks and felt very poorly indeed.  I was told it was the herx effect.  Anyway I stuck with it and gradually started to feel better.  My diet's a bit more relaxed these days (but added sugar and processed foods are still a no no), and my weight seems to have stabilised although I eat quite a lot.

I'm still waiting for the glutathione capsules to arrive.  Hope they make a difference!

Hi Irene,

I am glad to hear that switching to a healthier diet has worked so well for you.  I have been losing a few pounds every year and now find I am too thin but seem to be unable to gain weight.  According to my doctor the difficulty in breathing takes a lot of energy.  Anyway, I am feeling a bit better these days and hope to stay where I am for a while.

Enjoy the summer.

Louise

I think changing diet has helped, but I'd say the main reason for my improvement is paying more attention to clearing my lungs each day.  I nebulise a saline solution each morning to get as much mucus up and out as possible, and throughout the day I'll take every opportunity to clear any yuck that might have built up.

I also use a neti pot each morning to rinse my sinuses.  It seems that sinus problems go hand in hand with bronchiectasis.

I wish I'd done this years ago, but when I was working there never seemed enough time.  

Re the weight, I'm the lightest I've ever been, maybe too light but I'm happy with this.  I could do with a bit more fat on my face and boobs though.  I eat a lot, snack on walnuts, brazil and almonds, have fresh cream in my coffee, put lots of butter on my veg.

I'm pleased you're feeling better. Long may it continue!

Irene

Hi Irene,

Me too for all the good things you mention.  Lots of nuts, veggies with butter, cream in coffee, whole fat dairy products. One good thing with this disease is that there is no fear of getting fat but avoiding sugar is always a good thing. I also get rid of mucus often and use the neti pot to clear out the sinuses.  I am off to do this right now.

Continue feeling well.

Louise