Mayo Clinic Connect
I heard salt rooms are good for the lungs, has anyone used salt rooms to help with breathing?
Hi @jammer– I'm interested to know the benefits of this. What research have you done? Is there somewhere local that you can go to try it out?
Not tried, I was reading online about salt rooms and their benefits. Going to speak with my doctor on next visit in re to this
Liked by Jamie Olson
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@jammer Hi there. Interesting that you bring up 'salt rooms'. It seems all the rage right now. One opened up recently in my home town as well. They offer 'reiki' as well as other meta-physical treatments along with sitting in the salt room. I don't know if you have seen our past posts about inhaled sodium chloride (salt/saline) that many of us do; but it is akin to the salt rooms. I believe that getting a prescription for the sodium chloride is probably more beneficial than trying to get enough of it from ambient exposure from a wall. You can always try it. Here, it costs $40.00 a pop. Personally, I'd do the saline in our own nebulizer at home. What are your thoughts?
Liked by lorifilipek
My thinking is that the salt rooms can get high in cost. I am just starting my journey with MAC, did not know about the saline nebulizer but sounds much better. I will ask my doctor about this. Thank you for the info.
@heathert……in addition to Arikayce were you on antibiotics for a year or more? And to everyone else out there……is anyone else concerned about the long term damage we are doing to our bodies by taking the big 3 for 18 months? In addition to damaging eyes and ears these dugs especially long term affect our memory, our emotions and our psychological well-being not to mention other more frightening side effects. Our culture has long been heavy handed in dispensing antibiotics and studies have shown that people live longer healthier lives in areas where antibiotics are not prescribed. I know Azithromycin, Ethanbutol and Rifampin is the recipe favored by Mayo and NJH but many progressive doctors are beginning to question the use of these drugs. I want to believe that what I’m taking is absolutely necessary in getting rid of MAC and not something that is consistently prescribed to keep the medical and pharmaceutical companies afloat. It’s been said that doctors and pharmacies love chronic illness as we continue to pay for years …..I’d hope that they love us instead for their desire to cure us. Let’s hope the Hippocratic oath is their top priority.
Liked by Terri M., Volunteer Mentor
Yes I get concerned about the medication. Do I think for one second that Drs love us being ill and are prescribing medications to make money…. no and find that a bit offensive. What I don’t understand Is people going to Medical Doctors and being surprised that they are prescribed medications. We have the choice to decide for ourselves if we want traditional medicine, holistic, or combination. Medical professional follow specific scientific model…. Is it the best treatment for everyone, no it isn’t. In fact, I’m having to make the decision to go back on the meds or not… due to side effects. But that’s my choice and we all just do the best we can. I wish this disease had one cure and it was instant. Unfortunately it, along with many illnesses don’t. I’m thankful their are MDs that are willing to work 80 hours a week to try to help. Some may be in it for money as you said you have heard, but being married to one, I know he wants nothing more than for his patients to have a good response and would never “ love” for his pts to be sick so that he makes $. Choose Western Med, Eastern, Holistic, or no treatment at all…. that’s on each of us.
Liked by Terri M., Volunteer Mentor, ling123
@hydran3a yes I was also on the big 3 and still am 4yrs later. It is a worry.
I didn't have to think too hard about starting the meds – my MAC was so bad by the time it was diagnosed that I was basically existing to cough until my abs hurt and I couldn't talk. (MAC treatment was preceded by 4 courses of treatment for pseudomonas, which I also had.) I had no energy and spent my days on the couch. If there is long-term damage, I will just deal with it – at least now, after several months, I am beginning to live a somewhat "normal" life again. Yes, I have bad days, and some of the side effects are unpleasant, but the cough is far less, and I can carry on a conversation without hacking in someone's face. I am extremely vigilant about following the advice I was given – probiotics, no alcohol (to avoid further taxing liver), avoiding respiratory infection & limiting exposure to sick people, frequent rechecks of eyes, hearing and liver/kidney function. My poor pulmonologist was nearly in tears as he delivered the news that I had to begin treatment because he is so concerned about his patients' well-being – I know his office hours, and I often receive callbacks, or just status checks from him or his nurse at 6:30 or 7:00pm. I certainly am not worried about my doc, clinic, pharmacy or "big pharma" getting rich off the prescriptions. Most of those prescribed for MAC & pseudomonas, except Arikayce and Tobramycin, are off-patent and generic.
Liked by Jennifer, Terri M., Volunteer Mentor
Well said, @jaejack . Personally I don't believe doctors want their patients to not recover from their diseases so they can continue to make money off of us. There is no guarantee that, even if we get cured for certain diseases, we will stay free of that disease. Even if that is true, more people will be born and get sick after us. So I don't see doctors running out of patients to treat and having to rely on what patients they have currently on hand to make a living. My pulmonologist gave me all the pros and cons of the big 3 to treat MAC and let me decide what I wanted to do. Because I don't have other underlying diseases and are otherwise very healthy and active, I chose not to go on the meds. So we decided together that we would take the "wait and see" route. He only sees me once a year unless my condition gets worse. So far so good on my part and he is happy with that. In the meantime, he's got plenty other patients to take care of. I need to make my appointments at least 6 months in advance. So I highly doubt he would run out of patients just because I chose not to get on the treatment and decided to only see him once a year.
Liked by Colleen Young, Connect Director, Terri M., Volunteer Mentor, lorifilipek
@jaejack I found this to a very interesting discussion. We are retired military and Walter Reed Bethesda Medical Center will never run out of patients. On the others hand, we find the doctors, even though the active duty, to be very caring. They care, because they are interested in the wellness of the person they are treating. It is the same though as anywhere else, you must be willing to establish that patient/doctor relationship. My wife was given the choices concerning the "Triple Treat" good and bad sides. She tried it for six month or so and it was too much for her suppressed immune system. It did help her for a period of time, but the "bite became worse than the bark", meaning it did more harm than good. She is back at the point of need some sort of treatment, but "Triple Treatment" has been ruled out as far as she is concerned; It her choice…
As stated previously, I am a researcher, not by trade, but out of necessitate. I joined this thread to see what other persons are going through and the type of help they think they are getting for their problem. One thing I notice right away, there are more women, according to this thread, than men suffering from this disease or bacteria. I am wondering what that is an indication of. We are scheduled for a CATSCAN later this month to determine negative progression or not.
One other conclusion we have come to, we started to died the day we were born. There will be many trials , suffering, and tribulations we have no control over, but trust we will be taken through them. The life we live is not all about us and the Date of birth (DOB) or the Date of Death (DOD), but DASH in betweew them. We have recognized there is only so much doctors are going to be able to do for us and it is incumbent upon to do as much for ourselves and others while we live. That's why we will trust the doctors to do their part, but trust more in that the creation of life to give us and do the best we can with it. I am researching all of the medicstion individuals on this thread are taking organizing what people are saying that works best for them. As we all know, what will work for some, doesn't work for others, but we will have a strting point of where we should be.
Liked by Terri M., Volunteer Mentor, lorifilipek
I heard that too and am going to one in Sugarland soon so I will let you know!
@jammer You may want to mention that many of us on this site are using the inhaled saline. You would want to ask for a prescription for sodium chloride 7% and you will need a scrip for the nebulizer also. If you scroll up, you will see a 'search' box. Type in 'sodium chloride' in that box and push enter. Past conversations about sodium chloride should pop up. This site has all kinds of buried information. You just have to dig, hunt and peck around for it. We jave a Discussion board also. It is located on the Mac home-page.
Liked by Margie E, lorifilipek
@windwalker About the sodium chloride percentage, at my request, my Dr. prescribed 3%, but when I went to fill it, the pharmacist at CVS here in NY said the highest they make for people at home is .9%. That is what I’m currently using. Where do you get higher apercentage than that? Is it from a special pharmacy?
@ginak I got mine from CVS this last time. I used to get it at Walgreen's. You can go to http://www.goodrx.com and see who in your area has it. You can order it online too. Someone recently posted that they purchased it for $21.00.
Liked by ginak, Margie E
@ginak, Your CVS pharmacy should be able to order in for you.
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