Posted , 76 users are following.
I am here to find patients like me with Bronchiectasis and the complication of chronic Pseudomonas Aeruginosa. I am intersted in knowing what kind of treatments they use to stay healthy. I have had theP.A. for seven years but do not have Cystic Fibrosis.[/b]
8 likes, 277 replies
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irene87455 Guest
Posted
Bud
It's great that you've had such fantastic results with tobi and as a lifelong (67 years) bronch with pseudomonas these last four years, I was extremely interested in this. However, after googling it, it seems there can be many nasty side effects - unfortunately as with most medications. Please take care.
Carol
I suspect that the side effects are the main reason you haven't been prescribed tobi. Please see above.
I'm very much against taking any medication unless absolutely necessary and would encourage a healthy diet, exercise, supplements, avoiding people with coughs and colds etc to keep the body as healthy as possible.
I've been having herbalist treatment recently - mind-wateringly expensive - but so far, so good.
😊
gb78926 Guest
Posted
Irene:
?There are or can be side effects to virtually anything we take, natural or man made. I do have side effects from the Tobi. All of these usually start two days into the now seven day course of the anti-biotic and last for about three to four days after the last vile taken. They are, headaches, sore throat which eventually leads to a minor throat irritation and dry coughing and a general feeling of a very mild case of the flu with no temperature.
?That said, all clear up at about day four after using the Tobi and all are, in my opinion, more than worth the monthly often times severe infections, which at times lead to pneumonia, which I've had as best we can recall ten to twelve times. As I stated since starting the Tobi in 2009, not one infection, no pneumonia and only two colds.
?My Best
Bud
irene87455 Guest
Posted
If it prevents you from getting pneumonia then I guess the side effects can be worth it for you. I just didnt want Carole thinking it was all straightforward.
I'm impressed with your daily 4-mile walk. I've recently started exercising daily on my mini trampoline and feeling the benefits already.
😊
mack1949 Guest
Posted
I was diagnosed with Bronchiectasis about a year ago..that was after continue coughing for over a year and being diagnosed with pneumonia, bronchitis, flu, etc. etc. etc. and having pill after pill, steroid after steriod prescribed along with variations of cough medicines. Finally, after a visit with my respirator dr. March 2016, a CT Scan determined I had bronchiectasis. My respirator dr. suggested I start 600 mg of mucinex twice daily and a clariton daily. After almost a year and a half of coughing, I was game for anything. This did seem to help some! Next I started researching bronchiectasis blogs US and UK. Among the UK blogs I found that many were using honey and lemon to help suppress the cough. I also found that milk products caused more mucus buildup. I have cessed all milk products (: . I no longer drink milk, which I love, no ice cream, no cream in coffee...I quit coffee and drink tea now. Review of the UK blogs I noted that many would add a teaspoon of raw, unfiltered Manuka honey and a teaspoon of lemon juice to their daily tea. I have started that practice, except I can't afford the Manuka so I use Carmichael's (a local)... I also take a teaspoon of honey twice daily. Seems the honey really helps with the cough. I have gone from a constant cough to a few times a day, more so in the evening, hence a teaspoon of honey. I know bronchiectasis is part of my life as is the cough but it is nothing what I had a year and a half ago.
janice15800 mack1949
Posted
Glad to know you're doing better, honey and lemon helped me too. I'll add something else that's helped me and that is the accapella or flutter...breathing excercise.
Good luck!
carole74618 janice15800
Posted
I got a flutter thing from the hospital. I do use it but can't do the amount they tell you. I do about 5-6 instead of 10-15.I find that impossible. When I go nxt in March I'm hoping they give me the Tobramicin 4 my neb.
mary_ann_0313 Guest
Posted
How are you doing?
Was wondering what med you take for PA...
irene87455 mary_ann_0313
Posted
Hi Mary Ann
im managing to keep the pa under control lately and as my consultant knows my aversion to ciprofloxacin, he's agreed to let me have augmentin if I get a bit chesty. Seems to be working for now.
i take lots of supplements to keep my immune system well, and also nebulise a saline solution (to which I add a few drops of garlic liquid) every day.
just recently I've been doing a daily nasal rinse with my Neti pot as I seem to get a lot of post nasal drip.
hope this is of some help
😊
Operalyn irene87455
Posted
I hope you don't mind my asking but which supplements have you found beneficial? It's a bit of a mine field!
irene87455 Operalyn
Posted
It certainly is a minefield and I spend way too much time googling. These are the supplements I use but it doesn't mean what I use is safe or to be recommended. Please check them out for yourself.
Oregano oil capsules - a natural antibiotic
olive leaf extract - natural antibiotic
krill oil, ubiquinol, vitamin D3, vitamin c (liposomal form is best but pricey)
ive just started taking glutathione which is a precursor to NAC or vice versa), lots of encouraging reports for lung health
i nebulise a saline solution each morning to get as much yuck out as possible (extremely important), and as I mentioned in my last post I'm now doing a nasal wash most days.
its all time-consuming, not to mention expensive, but I feel healthier now at 67 than I've ever done.
😊
Operalyn irene87455
Posted
I am far better now than when I was young. Probably because I look after myself rather better! I always do my postural drainage now - much harder when I was working full time and partying at night. No wonder I used to get every bug going!.
irene87455 Operalyn
Posted
I should add that a few years ago I cut out sugar completely! Lost a stone in about a month and thought I was dying (due to herx effect). I've pretty much stuck to it, don't eat any processed food.
And more recently raised my bed head by about 4" by placing a few books under the feet. See 'inclined bed therapy'. It didn't seem to make much difference at first, then a week or so later I noticed I'd slept through the night without rattling. Happy to say I've continued since then. It could be a coincidence but my partner's noticed the improvement in my quality of sleep.
mary_ann_0313 irene87455
Posted
BTW, do you use any albuterol with your saline solution? Do you use 7% saline or 9%?
Thanks,
Mary Ann
irene87455 Operalyn
Posted
You're right operalyn, since retiring I'm able to spend more time having a good clearout each day when has been so beneficial. Wish I'd devoted more time to it earlier.
I find nebulising a saline solution helps clearing gunk out, but my sinus wash loosens it too.
😊
irene87455 mary_ann_0313
Posted
mary_ann_0313 irene87455
Posted
I was told to nebulize albuterol and saline for expelling mucus twice a day in addition to using an acapella during the day to keep the mucus moving.
mary_ann_0313 irene87455
Posted
mary_ann_0313 irene87455
Posted
I purchased the liposomal form of Vit C by LivOn....pricey, yes. $1 a packet. Thank you for the suggestions. Hope they make a difference with the olive leaf and ubiqinol...been taking CoQ10 for many years. Started Oregano Oil which I had in my cabinet . I wasn't sure about the Krill Oil which I had bought last month...read something negative about it, but can't remember now. I take Norwegian fish oil by Dr.Tobias. Moved over to NAC in place of Mucinex a few weeks ago. I can tell I am getting a bit sicker right now so I wanted to try to help this go easier before I get the antibiotic.
irene87455 mary_ann_0313
Posted
Sorry to hear you're struggling so much. I hope the Vit C helps. When I'm not feeling great I increase the dose. It can be made quite easily and very cheaply although I haven't tried it myself yet. Lots of info on YouTube.
I read somewhere not to take NAC with glutathione although I don't know why. I'm still trying to find it in liquid form for nebulising. It's a fairly new treatment and I will ask my consultant about it when I next see him, although he's not keen on my complementary treatments. Well I'm not keen on round after round of antibiotics.
i use my nebuliser once a day although it's prescribed twice daily. Did I say that I add a few drops of garlic liquid?
Please note that these are my own 'experiments' and not prescribed.
I also rinse my sinuses with warm salt water to which I add about a quarter teaspoon of johnsons baby shampoo - google it! It loosens up the mucous and the shampoo is supposed to get rid of pseudomonas.
If you do need to take antibiotics then please take a probiotic. Hope you feel better soon.
irene87455 mary_ann_0313
Posted
Just thought I'd mention I've just ordered cannabis (CBD) oil. I've been reading lots of good reports on it, and an online company I've used for years to buy supplements has just started selling it. Of course it's the legal form of cannabis which doesn't give you the high. Again - not cheap! I'll report back in due course.