Recent things I researched this week in the news

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I am a 69 year old female with bronchiectasis. I was not surprised when I was diagnosed since I had an episode with a dirty cpap machine ten years ago that spewed lots of gooey water from humidifier into my lungs.  I went to the doctor right away and got an antibiotic, but it wasn't enough obviously. I was diagnosed with asthma first, about 5 years after the episode, but I was diagnosed about 5 years later with B. I have been on the corticosteroids for about 10 years and  it has had a toll on my general health. I won't go into them, but I am hopeful and thankful for my life and God's blessings.

Anyway, I spend much of my time looking for better ways of controlling this disease.  I haven't found anything to use other than nebulizing sodium chloride and the flutter valve. The days of coughing "like a lady" are over.  I am thankful for being able to cough.

I spend a great deal of time researching new devices, services, etc.  I go to acupuncture one or twice a week.  I think it is helpful, but not totally sure where I would be if I didn't.  

The research that I did this week was encouraging.  I came across a service called Salt Spas. I haven't tried it yet, but it is on my "to do" list.  Salt is definitely a way of cleansing the lungs. My suggestion is to research it because there is proof that goes back many years that salt miners had no lung issues due to their working in these salt caves. The name of the service is Halotherapy. 

The other news item is that Bayer is in its 3rd clinical trial for Cipro inhaler for bronchiectasis. I didn't get to read the whole article, but there was a convention in LA this week whereby they were bringing the results of the trials to the convention for chest physicians. I know nothing more than that, but to me, an antibiotic straight to the lungs is what we need. Getting rid of the infectious mucus is pretty important. I am hopeful.

Go to the American Lung Association June 9, 2016 issue on Salt Caves.

 

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21 Replies

  • Posted

    Information much appreciated. Will discuss when I see the consultant next. John. England
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    • Posted

      Thanks for your reply.  I am hopeful that there is something in the salt that may be cleansing to our lungs.  I use MediRinse every day for my sinuses and that definitely is cleansing to them. MediRinse is mostly salt and a little big of baking soda. 

      My only concern about the salt spas is if they can replicate the conditions of a salt cave. Not sure about that.  

      If you are not doing this yet, my suggestion is to ask your medical provider about nebulizing with sodium chloride.  It does help move the mucus out.

      My concern, as most of us, is to keep the B at bay, with no progression in the stages.  If salt will do that, I will be happy.

       

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  • Posted

    Hi Mary Ann, thank you for sharing your research, I have just started using a salt pipe but it is too early to know if it will help. I also frequently have to use oral steroids and feel they make me very unwell. Doctors say not but wondered if anyone else suffers troublesome side effects from oral steroids?
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    • Posted

      I am on Advair....high dosage.  I hate what it does to my body.  It affects the bones, the skin, the hair, etc.  The skin on my arms is  paper thin and very reptilish in looks. 

      Where did you buy a salt pipe and where did you hear about it and its benefits? 

      Since we have B, steroids are the norm. I would prefer to be healed by my Lord, but if not, then I continue to ask Him to send me the methods to keep it at bay in first stages. The research that I did this week gave me hope that He is listening and giving me answers. 

      Fifteen years ago, I didn't even take aspirin, had every good medical number on my side, and then came the CPAP for sleep apnea. It makes me so angry and I relive that horrible episode every day of my life. If there had been a more powerful antibiotic for lung inhalation, I think I could have been freed of this disease back then. Well, it is what it is and I take each day as a blessing from God. 

      My home is full of all the vitamins, supplements, essential oil diffusers, and all the respiratory gadgets that anyone can buy. When I go away for a few days, one whole suitcase if just for all the gadgets and supplements. I continue to stay upbeat with the hope that something will come into the marketplace that will cleanse us and give us less mucus.  Praise the Lord there is research being done by biochemists who care about our daily stuggle. 

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  • Posted

    That's good news about the inhaled Cipro. I have been on the Toby for several years and I don't think it is doing anything. I also believe my bx came from my cpap machine. It is my fauld for not cleaing it daily. I would rinse it out but to actually use soap and water every day I did not do. I also just used tap water . Looking back I wish I hd never used the machine. I stopped using it 6 years ago because I lost 40 pounds and have lept it off and do not have any problems I don;t think. I have read about the salt caves and there is a place in Chicago that you can go and sit in but not near me in Michigan.

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    • Posted

      Good for you that you have lost the weight necessary to avoid sleep apnea! I didn't have a weight problem....I have a small  mouth with slight recessed chin. I am small framed with all the negative things that go along with being small.....osteopenia, etc.

      I am sorry that you too have been a victim of the CPAP lacksidasical club.  When I got my machine, nothing was said about sanitizing the humidifier tank with brushing the corners, using vinegar and water, etc.  I found out all that info online, but it was too late.

      Since last year, I got rid of the CPAP and have the mouth appliance that takes care of sleep apnea. I can't tell you the name of the appliance since this blog will delete my message to you. Do some research and you will find it.  After the episode, I had issues with anxiety using the CPAP machine and my HMO allowed me to get the device. It cost about $1400, but my insurance paid all but $270..  

      I love the appliance and wish that all of you could be candidates for it.

      One of the side effects of B is weight loss.  I lost 15 lbs this year very easily. I am scared to lose weight now. I also am pre-diabetic so I watch everything I put in my mouth. I eat mostly fish meals, and low carbs. Pre-diabetes is another side effect of B.  I suggest that you all read the side effects of B and be aware of what could be coming.  You don't want to get Diabetes on top of B. Focus on the best things to eat for good health and see a nutritionist if you can. 

      I just heard about a salt pipe from one of the replies today.  I am going to look into it.

      By passing along info on  new techniques, new appliances, new supplements, we can make each other's life more bearable and joyful. I look forward to the day that I can be free of this.  

      Please tell us anything that you use that could be of help to others. That is the best part about blogs...people helping people through communication.  Love to you all. May the Lord's love shine upon you.

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  • Posted

    It's my understanding (from doctors) that people who have bronchiectasis, is due to childhood diseases, such as whooping cough. That a lot of people have bx, but it is not sever, they don't even know they have it.  It can become an issue anytime during your lifetime.  I started having a constain cough in my late 30s, I'm now 67. 30 yrs ago, doctors thought it was allergies, asthma or COPD.

    It is just within the current past, that doctors, by way of a CT scan, have began diagnosing bronchiectasis. It's the weakening of the airways that is the difference from COPD.

    Having worked in an unhealthy atmostphere, recurring lung infections or, as several people mentioned, inhaling unclean water, or any number of variables can trigger the start of bx. (In my early 20s, I working in a sewing factory for about a year, breathing in fabric fibers, I'm sure that was not good for my lungs. Also, in my late 30s, we had a house built, it was after living in that house for about 2 yrs, I started having lung issues. Who knows what preservatives were used in that wood in the building of that house.

    I have also heard of salt caves and a lot of people on this forum uses a salt pipe.  I use sodium Choride in my nebulizer.

    What I have learned from doctors and this website, is to stay as healthy as possible and keep your lungs as cleaned out as possible. There are several techniques for draining your lungs.

    If you live in the states, see if your doctor will get you a percussion vest.  It helps loosen the mucus.  Mine is from HIll-Rom.  It has a life time guarantee. Had to have it replaced about 8 yrs ago, they sent me a new machine and picked up the old.  No cost to me.

    Stay healthy, Beth

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    • Posted

      Thanks for the in-depth message. I never heard anything of the sort from the doctors about a childhood disease causing the dormant B.  I didn't have whooping cough so I can't say that was it for me. Are they saying measles or mumps could have caused it?

      You obviously have it under control being that you have had it so long.  Thanks so much for the recommendation of the percussion vest. I will check with my doctor on it.

      Does the sodium chloride nebulizer come before the percussion vest?   

      Thanks again for the info.

      Blessings to you.  

       

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    • Posted

      mary ann,

      I also had mumps and measles as well during childhood. I think it's like: some people smoke most of their lives and don't get lung diseases, and some people who have never smoked, get lung diseases. Who knows, who and why? There must be events that happens in a person's life that triggers the offset of the disease.

      I have two meds that I use in my nebulizer. Albuterol and the sodium.  I use the vest at the same time, to save time.  The vest can be used after a treatment as well, or anytime thru out the day.

      Beth

       

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    • Posted

      Have you looked into the salt rooms or the salt pipe?

      Does the Bronchiectasis mucus ever change in texture?  I always feel like it is close to choking me. I drink lots of water, but that doesn't seem to work on it. I am thankful that the color of the mucus coughed up is less yellow than it was previously.  The flutter valve and nebulizer have helped with that. Any suggestions?

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    • Posted

      I have not looked into salt rooms or salt pipe.  The sodium  that I use in my nebulizer is the only salt related med.

      Yes, the mucus can change in texture:

      The sodium med states that I can use it up to three times a day.  I have experienced that if I use it more than once or twice a day, my mucus gets too thin, then it's like trying to cough up cobwebs, and I get a lot of crackling sounds in my lungs. That could be your issue...The mucus is too thin. I find it's easier to cough up mucus that is formed (thickened) a little bit. So, during allergy seasons, I monitor what allergy meds (which can thicken the mucus) I take, and how often I use my sodium med each day.

      Hope this is helpful information for you, Beth

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    • Posted

      Hi Beth,

      Are you saying that during allergy season, you do or don't use Mucinex type drugs? 

      I am faithful about using the nasal rinse and steroid. My sinuses are constantly dripping which gives me a ton in the back of my throat.

      I live in a dry area so I am sure that if I moved to a more humid climate, I would do better, but leaving family is a problem.

      Before I was diagnosed, I kept complaining to my allergist about that crackling noise.  The noise was most noticeable when I laid down in bed. Because Bx is not prevalent in the US, it was not easy for me to be diagnosed on the normal allergy visit. My allergist was actually frustrated with me. Singulair did help the "lump in my throat" feeling. The biggest change has been over the past 2 months with the sticky mucus.  It is clear or white foamy. The clear one is worse for me. 

      I think I understand what you are saying about coughing up the thickened mucus.

       Have you had any infections since getting the vest?

       Before I was diagnosed, I was constantly going on antibiotics, but then I was back again the next month with the same issue. Anyway, even though an "out of the area" doctor had told me two years ago that I had Bx,  my primary care doctor totally disagreed.  My allergist didn't even see those records. I am not sure how much different it would be today, an extra year later. 

       

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    • Posted

      mary ann,

      I also have constaint congestion in my sinuses. Sometimes during the season I'll use Mucinex and/or benedril at night. Benedril drys the mucus, so I'm careful about using it too often, it will make the mucus to thick. Mucinex is good for congestion and helps break up the mucus.

      I know that you mean about doctors misdiagnosing this illness. It took my doctors years before I was correctly diagnosed with Bx. My specialist in Indiana (before I moved to Iowa) about 4 yrs ago, felt he was missing something with my care, so he had be go to the Mayo Clinic.  At Mayo, they did a CT Scan that showed the weakening of the airways that is a result of Bx.

      Since this is a progessive illness, (up until the last year) I have had many, many infections, numerous stays in the hospital, and numerous bronchoscopies (as an out-patient procedure, they put tubes into my lungs to suction all the mucus out). At my worst, in 2001 I had so much congestion in my lungs, I was in ICU on a respirator for 6 days. That's when I started seeing a specialist. That was when he had me get a nebulizer and a vest.

      10-15 yrs ago, I used the nebulizer once a day, and could go over a year without a hospital stay. Then slowly I had to up the nebulizer use to twice a day, now I'm at 3 times a day. I have been on prednsione for years and don't think I'll ever be off of it.  Fortunately, I'm not bothered by the sideaffects.

      One of the reasons that I haven't been in the hospital in over a year and have not had a bronchoscopy in over a 1 1/2 yr, is because of this website.

      I learn, from this website, also from doctors, how to keep my lungs as cleared as possible. I take Mankuta honey every day (antibiotic properties), Tumeric (with pepper to help the affects) every day for the anti-inflammitory properties. I had my specialist put me on a low dosage long term antibiotic.   A lot of people on this forum also change their diet, ex: no dairy or no proccessed foods with positive results. I've even done a little with essental oils.

      Think outside the box, Beth

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    • Posted

      Hi Beth,

      Your post was uplifting to me since you are stable, most of all!

      And also you gave me very good info on what to expect and what to request for my situation.  

      I take tons of vitamins, but glad you mentioned the Mankuta honey.  I take tumeric, but not with pepper. I thank you for those recommendations. 

      I have been on prednisone from time to time, but am hoping that the Advair will be enough for now. I think I mentioned that I changed my diet due to the pre-diabetic test results.  Now, I eat more fish than ever even though I am reaching my saturation point. I like dairy, and don't know what I would do without Greek yogurt. What is left if you must eat lots of protein, low carbs, and low sugar? My options are limited.  I love veggies and they are plentiful and cheap where I live, so I don't have a problem with those. It is the sweets that I crave which plain Greek yogurt satisfies. I have heard that the dairy items are inflammatory foods. I will keep them at a minimum. I haven't been eating much cheese lately which I love.

      Yes, I have the essential oils too and use them often. I think the best ones are those that have eucalyptus. 

      Thank you so much for your honest suggestions, your methods to stay healthy and out of the hospital,  and your positive attitude. 

      Thank you, Beth!

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    • Posted

      One last thing:  has anyone ever mentioned Chinese meds for this disease? My acupuncturist recommended Teapills (abbrev), but would never try them without getting a recommendation from someone who has the disease and has had success. 
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    • Posted

      I have never checked into Chinese meds. I know several people on this website use certain teas that help.

      One thing that I forgot to mention is, last December I went to The Lung Institute in Nashville to have stem cell treatment.  They use your own stem cells and the theory is that the extra abundance of stem cells go to the damaged areas of the lungs and repair the damage (it won't help with the weakening of the airways).  The hope is an improvement of lung function.  

      Since it's considered research, insurance won't cover it ($7,500 -12,000 depending on the type of procedure).  So my husband and I had to think long and hard about it. It has been 10 months, I've felt great at times and other times not good.  I feel that I can clear my lungs easier now than a year ago (and no hospital stays or bronchoscopies). Is it due to being more proactive or the stem cell treatment, I can't really say.

      Most of the time, I have to take things easy.  I get out of breath easily.  I'm fine with just walking but if I'm doing things like working in the yard, I move slower and take breaks to catch my breath. But by moving around it helps loosen the mucus. That's why exercise is important

      I'm 67 and your 69, I think we're both doing pretty good, all things considered.  Some people on this forum are younger than us and need the help of oxygen.

      Stay Healthy, Beth

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    • Posted

      Thanks for more info. I will keep my eyes and ears open for research on stem cells for lungs. I am sure you did the right thing in spending your money on it.  

      I was extremely active walking until three months ago.  I got an IT Band problem on my left side so I got a cortisone shot.  Lo and behold, I ended up with piriformis on my right side so I am doing exercises on that so I can get back to walking.  I am sure the lack of walking has hurt me lately.

      I had a horrible night's sleep last night.  I went to bed with what I thought was clear lungs, but they kept me up the rest of the night going back and forth to the bathroom to clear out what was not deep.

      This morning I am worn out.

      I bought the manuka honey online last night.  I wasn't sure what brand of tumeric/pepper to buy.  

      I hope all these supplements that I buy will work because my cupboards are loaded already and my checking account is not. Seriously, I am thankful for what I have and pray that I am a good steward of what God has given me for this time of my life. Sometimes, I think it is all futile, but then my husband gives me hope that I will find the recipe for stability.

       

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    • Posted

      I get Tumeric in the vitamin area at the pharmacy dept. It comes in capule form.  I take it with pepper corns (easier to take), about 6 or 7. Some one on this website said to take it with pepper as that helps with the affects of the tumeric.  I take 1,000 mg or 2 capules twice a day. Some people buy it in powder form and use it in smoothies, health drinks or cooking each day.

      Lately, I've been having sleeping issues, as well.  Wake up because of sleeping with my mouth open, unusual for me, must be my sinuses acting up. Must be due to this time of year.  Once winter sets in, it should get better.

      Try to get your lungs as clear as possible before going to bed. After using your inhaler or nebulizer and flutter valve, put your head lower than your waist (I get on my bed, on my knees and elbows with my head resting on my hands) for afew minutes.  Let gravity help you. I can usually cough up stuff then. But I know how you feel.  I think my lungs are clear, but wake up afew hours later very short of breath.  I will use my inhaler during the night to help.  There are times that I will even use my nebulizer.

      It's a matter of finding out what works best for you, Beth

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    • Posted

      Wow, Beth, I am sleeping opposite to what you are doing.  Since I have GERD, I sleep on a wedge which makes me higher at the head. I guess I can change that if it means getting mucus out easier.  I did read something that said to bend over with head down below waist for easy expulsion of mucus.  Guess I never thought about changing my sleeping position. 

      So, the pepper corns (whole) are not too rough on the stomach?

      I already have tumeric in powder and also in tablet form, but no pepper included.  I will try the peppercorns with the tablets. Good way of using the peppercorns that I had left over from a broken pepper mill.....

      Beth, thanks again for your suggestions.  Blessings to you and yours.

       

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    • Posted

      I don't sleep in that position, I just get into that position for several minutes to help cough up stuff.  There are times when I feel it in my upper airways, and it just won't cough up, but this position helps get it up.

      I sometimes have to sleep using a pillow wedge.  I try not to, my thought is that by lying flat, is helps the lungs drain by use of gravity. I have even thought of maybe having the foot end of the bed higher, but I think that gravity would cause my mucus to containtly drain into my throat and I would be coughing all night.  But if you have GERT, that wouldn't be good for you.

      This forum is very helpful so if you have any other questions or concerns, this is the place to ask, 

      Beth

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