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My sortness of breach is getting worse.

Posted , 11 users are following.

louise17255
louise17255

I am new to this forum but I have been living with Bronchiectasis for more than 15 years.  I have been on occasional courses of Cipro for pseudonomas but mostly I have managed by eating healthy food, exercising and taking supplements plus using nebulized sodium chloride to bring up muscus.  Gradually I have been having more difficulty breathing and now I may have to start supplemental oxygen at night.  This depresses me because these things never get better.  I have been looking into stem cell therapy but it is expensive and I don't know if it would help.  Has anyone tried this or does anyone else have experience with chronic shortness of breath?

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  • mary_ann_0313
    mary_ann_0313 louise17255

    Posted

    Talking about food and diet, what do you eat for breakfast?  It happens to be a difficult meal for me because I am allergic to eggs. I was eating oatmeal and blueberries every day with almond milk, but then I realized that I shouldn't be eating wheat products. We  have GMO problems in the US. I love oatmeal and cream of wheat, but have given it up.  Now I am drinking a protein drink (not whey, but an organic pea base) with coconut yogurt homemade  from coconut milk. It is very good, but not filling enough to gain back some needed weight.

    Anyone have any suggestions besides fruit and bread products?

    • louise17255
      louise17255 mary_ann_0313

      Posted

      Hi Maryann.  Eating is a problem for me too because my stomach is very sensitive.  The antibiotics may have something to do with that.  Anyway, I buy organic oats in a health food store for oatmeal.  Organic products do not have GMOs.  My stomach often growls when I eat certain things like protein powder but what it tolerates well in the morning is organic yoghurt (whole milk) with organic granola.  We also make a cottage cheese/flax seed preparation that is part of an anti-cancer diet.  We have it with a large fresh fruit salad. It is rather a lot of work.

      Now about the glutathione.  Yes, it is expensive but you only need a little.  For nebulizing I actually used a product I buy online called L-glutathione Plus.  It is capsules consisting of glutathione combined with about a quarter Sodium Bicarbonate.  I break open a capsule and put it in the salt solution prescribed by my doctor. I supppose you can make it yourself but I would always be concerned about avoiding contamination when I combine things myself to nebulize.  For plain glutathione, I put a quarter tespoon under the tongue now and then.  It is good for the whole body, especially the lungs but it is not easily absorbed.  For Vit. C, I use a powder, calcium ascorbate.  I have not yet looked into liposomal though I hear it is better.

      Keep up the struggle in good spirits.

      Louise

    • john12792
      john12792 louise17255

      Posted

      Hi Louise, I have recently been told I have BX. I have tried nebulizing glutathione and saline. the glut. seem a bit harsh as I inhale it. I am wondering what your and others experience has been. I am new to this forum. thanks for any help you may share
    • louise17255
      louise17255 john12792

      Posted

      Hi John:

      I see yu are recently diagnosed and wish you luck.  Over the 20 years since I was diagnosed my Bx progressed from "moderate" to "considerable" and my symptoms are much worse.  Do you know what severity you are?  What I have found helpful is eating a healthy diet, exercising whenever possible, expelling mucus twice a day with the help of nebulized salt, posibly with glutatione, and (now) a percussion vest.  I think it is possible to stay well for a long time doing these things but it is not easy to stick to this life style.  Are you using the glutathione mixture I mentioned before?  I go on and off it.  Sometimes not sure if it helps. I haven't found it too harsh.   Recently I had my first Bronchoscope.  They did not find anything and I may have picked up an infection with Serratia in the process.  Now on Ciprofloxacin.  Bummer!  I was considering the Stem Cell treatment until I found out that ex-patients are suing the place for false advertising and ineffectiveness.  I see that many if us are struggling with all kinds of syptoms and we do our best.  My pulmo is also proposing to keep me on Azithromycin for a few months at a time to try and lessen flareups. 

      I am not sure if Bx is always progressive and hope you stay well.

      Best,

      Louise

  • mary_ann_0313
    mary_ann_0313 louise17255

    Posted

    I made liposomal vitamin C, but it is much thinner than the one I purchased online. I must discard it because it is over 5 days old and I didn't want to take it while on the PA infusion med.  It messes with the kidneys and I didn't want to go into renal failure over Vit C.

    I finished the med last night and am ready to get into a stable mode to keep the PA away. I am going to make the Vit C again.  I made too much to start with however and won't do that again.  It was not expensive to make so I am not sorry I tried it. 

    I bought the Glutathinone and it is super expensive for less than an ounce of product! Would you nebulize it or make liposomal Glutathione?

    i am still taking the AlliUltra capsules and plan on taking them forever. My Pulmo doctor said that there was nothing to worry about in taking them, but didn't know of any benefit.  I guess it needs some clinical trials.

    I am constantly researching super antibiotics in the pipeline for PA and reading about clinical trials on other amazing drugs coming up, one for cancer.  I will send the link shortly.  It is a place in Seattle, Washington. Google Hutch and Seattle, WA and cancer cure.  It is very promising. Hope this gives hope to many people.

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