Getting the right team of doctors

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Hi all, Russ again. Thanks for the feedback, very helpful. 

The one difficulty that many of you and now me seem to have is finding the right doctor. My pulmonogist does not seem to think that I am very sick, if I am reading him right. Being a nurse for 30 years I think understand this phenomenon. I was the well one, and could not experience what my patient where experiencing. 

I'm not sure if I should seek out a knew docotr or maybe even find another doctor who can treat my many infections like an Infectious Disease specialist. I usually can not get see my pulonologist when Im sick and usually go to the medicine clinic. I just finished a 10 day round of Avelox. They did chest xray and I was advised to have my Pulmonogist  read it and get back with me. Thst was six daus ago.

By suggestion I will see an Immunolgist. It sounds like some of you have had a bit of struggle to get the ship going in the right direction. Does it just take persistance or did you luck onto a doctor who undrstands how important constant and consitant vigilance is needed to stay up with BRX.

Hope you are all doing well,

Russ

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11 Replies

  • Posted

    I learn a lot from you and how you manage your Brx. You are working among sick people where I thought it is better to stay away from. I been reading about avelox drugs and used for 10 days. I wonder where and in which stage the docter will describe it to us. It is an another strong medication with severe side effect. I love to know if you were on antibiotics most of the time or did you use natural remedies that benefit you more. I love to hear if I can manage my Brx naturally or what I dream of is impossible.

    Thank you and wish you the best

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    • Posted

      Bela, I have not been on any antibiotic long term, but perhaps as a consequence aI m on antibiotics just about each month.for about 10 days.

      I think one of the reasons for prescribing long term antibiotics is the number of infection a patient is having.

      I have not tried any natural remedies and that is a next step.

      There are few people on line who use natural remidies. Maybe you might wnat to put a another discussion topic out abot it. I would like to hear also.

      Have an awesome day,

      Russ

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    • Posted

      Hiya, I wrote earlier as to the Alernative things I do that have seem to help but as you see they moderated it I guess because I gave a name of what I was using,so I will try again.

      Every day I do 2 to 3 cups Ginger Tea with organic honey (I grate the ginger myself and soak in boiling water,I make about 4 bottles each time)1tsb. of Munuka Honey 1 in the morning and one before bed.

      then 8oz of water with Apple Cider Vinegar,use omly Organic Vinegar with the Mother in it I do 3 glasses  per day. Then I take Vitamin D.

      Note I still Nebliz to help remove Mucus and so far have been maintaining what I feel is helping.

      Regards,

      Charlie

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    • Posted

      Hi,

      Like you I also drink ginger tea daily and sometimes I'll add some Manuka honey. I take Vitamin D and C and I mix green powder with my OJ and gozzle it down daily.

      I also use a netipot every night to clean out my nose.

      I feel very healthy and strong and I rarely get sick.

      Best, 

      Ida

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    • Posted

      Charlie and Ida, thanks for the tips on natural altuenatives. Will use this as a guide. I'm looking to hook up with anyone in my city that has BRX to move along with my care. I can see that getting the sputum out is so imprtant and will attend to working on morning or noontime expression "of zee sputum". Again thanks, I feel more positive and see a way to keep myself healthy.

      Russ

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    • Posted

      Hi Russ,

      I'm actually following your advice and changing the time I do my physio to later in the day and it seems to work well.

      I'm wondering why you would try to change your time, since iI believe you said that it's so easy for you to get your stuff out in the evening?

      Anyways, I'm just thinking that you shouldn't try to force anything earlier in the day when the evening works well for you.

      Just a thought!

      Best,

      Ida

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    • Posted

      Hiya Ida,

      Just a side note ,Manuka Honey I was told should be taken straight and not added to warm or boiling water as the benefits of the bacteria fighting source is weaken,you may want to research it, seeing it is not cheap you need  to get all mthe so called benefits.

      Stay well

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    • Posted

      Hi Charles,

      Thanks for the heads up. You are right; it is very valuable information, since Manuka honey is so expensive. From now on, I will just eat a teaspoon of the honey by itself.

      Thanks again,

      Ida

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  • Posted

    Fortunately, I have a pulomologist that understands what we go thru, he has asthma since childhood, that's why he went into this field of medicine.  When I'm feeling bad, I can get an appointment within 24 hrs. The dowqnside is, he's not as familar with Bronchiectasis as I would like him to be.

    We will be moving at the end of the month to be closer to our daughters, it's near a big city that has Bronchiectasis specialists.

    My specialist here also suggested that I see a immunolgist, which I did.  I now have monthly IV to help with my immune system.

    Stay healthy, Elizabeth

     

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  • Posted

    Hi Russ,

    I'm on my fourth pulmonary doctor and I have only had BRX for four years.

    I believe that we have to be our own best advocates and seek out the best doctors possible.

    My first pulmonary doctor was an alarmist. She woiuld go; "Oh my god, this is so bad." She would have me take any test/exam possible and I swear it made me even more sick. I had more exacerbations with her than with any other doctor.

    So I did a lot of research and found the best pulmonary department in my area. I talked to a lot of people and was in everybody's face until I found out which doctor I believed would be the best one for me. However, I could not get to see him for two years and had to see his colleagues. The main office always told me that he wasn't taking on new patients or he was working on his research. Through back ways and a lot of manuevering I finally got to see him last month and he was fantastic. He is now my primary pulmonary doctor and I see him again in June.

    So, my advice to you is to do some research, talk to nurses, patients, scour review sites, etc and be persistent until you find a doctor you feel very comfortable with. It's totally worth the effort.

    Best of luck,

    Ida

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    • Posted

      Ida, thanks so much for sharing your process in finding the right doctor for youself. I am in the process of doing the very thing you went though to get to the doxtor who is really helping you. The main gift that you are giving me is that you did it. You kept going till you got what you needed to keep yourslf well. I saw my pulmonogist today. His nurse said when I questioned her that a lot of his BRX patinets ar on antibiotics so I asked him about it and he didnt think it was a good idea. He did say that perhaps I should check with the Infectious Disease doctor I saw last month, so that is my plan. I will see if he suggests also seeing an Immunologist. Right now I am getting so much from all you on our site that I think it is moving me in the right direction.

      Again thanks for your support and advice. Also, good health and good cheer to you on the St Patrick's Day!

      Russ

      May rht road rise to me your feet.

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