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    • #13859
      Brandon allen
      Participant

      Hey All,

      I will start by saying I do not have PH, but have always taken to finding solutions for people in tough situations and was wondering if anyone would find it beneficial to use a service that matches you to alternative health specialists based off of your schedule, condition, and confidence level in different treatments and methods of reduction for the condition at hand?

    • #13873
      Ally
      Member

      Hi Brandon, welcome to the PHN forum. My name is Ally and I’m one of the moderators. This is a really interesting topic. I don’t have PH either but I’m learning a lot from this community. Where does your interest come from? By the way, if you have any questions or suggestions about the forum, please let me know. 🙂

      • #13979
        Louie Lewis
        Participant

        brandon allen…i would be absolutely interested in this service…are you on facebook ?? my email is [email protected]

        • #14066
          Brandon allen
          Participant

          Hi Louie,

          I apologize for missing your comment, but I received your email and replied to your PM! As I continue to do more digging, I will keep reaching out and letting you know of other resources or people who can be of huge assistance.
          I am on facebook as well and can send it out to you!

    • #13874
      Brandon allen
      Participant

      My interest comes from seeing multiple people in my life, and that I have met go through unneeded surgery with injuries comparable to mine and coming out worst. I want to encourage people to seek not just traditional measures, but a natural (or as close to a natural approach) to healing as possible. Then there is the outdated way of filling out forms at a new doctor’s office and wondering if they are worth the time or money. Being able to create a constantly updated profile of your own that matches you to those seeking someone to help in your situation would be a better option than going in blind I feel.

      I have no suggestions at the moment, there is so much activity, so many topics, and enough content to consume for one as free has myself haha! Thank you for extending the invitation!

      • #13882
        Ally
        Member

        Thanks for responding, Brandon. You bring a really unique perspective to the community and I’m looking forward to hearing from you more! Glad you’re enjoy the content so far, too. 🙂

    • #13878
      denny
      Participant

      I had asked my pulmonologist about alternative medicine and got the usual western reply .

      I would gladly take direction from any one who could offer help . Trying to find some one and not getting into trouble is hard to do for me .
      Maybe you could expand on where to search .
      Thank you ,
      Denny

      • #13883
        Ally
        Member

        Thanks, Denny. If I come across anything that I think might be helpful to you, I’ll be sure to share it, and hopefully our other members can chime in with suggestions as well. Good luck in your search. 🙂

    • #13912
      Iris Alexander
      Participant

      I’m open to alternative medicine but haven’t found anything directly related to pulmonary hypertension. I would not be open to giving up my current medication but more of something to supplement it

      • #13924
        Brittany Foster
        Keymaster

        Iris,
        I feel the exact same way you do. If I could find a natural medicine specialist who could help me supplement what I’m taking that would be great. I had a pretty bad experience with a doctor who did acupuncture and sold supplements. He basically had me stop all my medications and to put it lightly, my body really hated it. I think if looking for alternative therapies or trying to find a specialist in this, it’s important that they pay attention to the medications that you are currently on and work WITH your doctors, not be so against them.

    • #13927
      Brandon allen
      Participant

      Denny,
      I apologize for the late response, as I come upon resources I will share and there I have a friend, I will ask who runs a functional medicine clinic. You could start with thumbtack as they have a holistic health section that will allow you to be matched to a specialist based off of who you’re looking for, or even if you do not know specifically what you’re looking for, and a nutritionist could help you identify foods and a meal plan that helps with your cardiovascular system.

      Iris,
      It’s awesome to hear you’re looking for other ways to keep improving your health! I think that is an issue overall with a lot of alternative options (being that they are unfamiliar with health complications), but I would imagine if you consult a functional medicine doctor (seeing as to how they earn their degrees in the same way as a normal doctor), nutritionist, or a naturopath (naturopath from one of these schools https://aanmc.org/naturopathic-schools/) you would have luck there.

      Brittany,
      Your experience with the acupuncturist sounds like a nightmare! How long did you see this individual?
      I am glad you brought up working with your doctor as opposed to against them, and using medication as well as supplements, it made me realize the value of having the choice of whether someone wants to use strictly alternative medicine, or a mix of both.

      • #13934
        Brittany Foster
        Keymaster

        Hi Brandon,
        long story short, I started seeing them for my anxiety and depression which was great and relaxing for that. Then they got into talking about whole body and other medical conditions I had. I wasn’t diagnosed with pulmonary conditions at the time, but I was dealing with reproductive organ complications of the tubes and ovaries. I was on a type of birth control to help this. I followed their advice, go off my medications, and my tube swelled to the point where I had to have it removed. They actually ended up losing their license and got shut down a few years ago because of people with similar stories (it was a big scam pretty much). But I know there are great holistic medicine doctors out there who WILL work with the medical team and treatment plans of the patients and look to supplement it rather than replace it. This is important. Thanks for your feedback and responses to others here too!

        • #13950
          Iris Alexander
          Participant

          Thanks Brandon I will check out that link

      • #13949
        Iris Alexander
        Participant

        Wow that’s scary Brittany!! I know when you have PH your willing to try just about anything that will stick esp if traditional meds haven’t given you much improvement. I’ve been trying to look into alternative treatments/supplements particularly to help with fluid and mucus build up

        • #13957
          Brittany Foster
          Keymaster

          Iris,
          one things that has really helped me with the fluid build up for more of a “natural medicine” (I also take lasix 40 mg a day) is medical massage therapy. See if there are any in your area. It’s more of a deep tissue massage and some have training in something called lymphatic drainage technique which helps to move some of that fluid out of the body. It is very helpful for me. It’s not a relaxing massage by any means, but it is helpful and something to look into!

    • #13938
      denny
      Participant

      Hi Brandon ,
      Thank you for the info .
      Another place I found { maybe on this site } that has good info , and can connect to clinical trails in your area is http://www.phaware.com
      My Pulmonary Dr. told me there were no trails for my age group , wrong Dr.
      Thinking we have to be our own detectives , no Dr. has ability to keep up to date on all things .
      Denny

    • #13967
      Brandon allen
      Participant

      Brittany,
      Your story is chilling in the fact that you put your trust in someone who said they could help and only made matters far worse! I am glad to hear they have been shutdown though (was only a matter of time).

      I will also say thank you for sharing the bit about massage therapists with Iris. I had no idea that some are trained to do those things.

      Dennis,

      I greatly appreciate the link to those groups and will be checking it out!

      • #13972
        Brittany Foster
        Keymaster

        Hi Brandon,
        yes there are some that are trained to work with patients with lung disease or heart disease. Sometimes they are part of a rehabiliation program too. I guess it’s about finding the right people that work WITH you and your conditions. My massage therapist is a medical muscular massage therapist and has her masters degree so it is more than just relaxation. She is very knowledgeable about the body and takes the time to learn things about my own condition. She has been great and I have been working with her since I was 12 ( for reasons other than my lung conditions). I started going to her for lower back pain due to a congenital conditions of my lower spine that was beginning to bother me when I played sports. She has worked on things like scar tissue post op, and has helped to heal things like groin tears, sprains, and strains a lot faster and less pain during the healing process. Pretty amazing what it can do!

    • #13978
      Jimi Mcintosh
      Participant

      2 years before being diagnosed with
      PAH , my wife had arranged for me to
      Visit a holistic weight loss clinic in
      Conyers GA. I was exhausted, gaining weight, not sleeping and more tired than usual. I was skeptical, but having watched my great grandmother heal people using “root medicines” (Cherokee). I decided to try it, fully expecting to be sold expensive homepathetic drugs and food plans.

      After exams and blood work , they said that I had some serious things going on in my body and that they were not qualified to help me. They potentially saved my life, by recommending a doctor
      That listened and referred me to specialist that found the cause.

      I am not 100% happy with my treatment plan, looking for a miracle cure, just anything that allows me to live a more productive life. I believe that we have to dream and keep looking for the cure, whether it is homopathetic, biological,
      Or new drugs. Be cautious and do not fall for scams. I have been contacted by a biological firms that promises to fix my lungs for a high price. The process they use is not approved by the medical association or the FCC.

      • #13980
        Brittany Foster
        Keymaster

        Jimi,
        Veey good advice about looking out for scams. there are a lot out there that make big promises of healing. The more exaggerated the promise is to “cure” you, I’d say its 99.9% false advertising. Keep looking for a combination of things that could help you live your best life. Not losing hope is a good mindset to have.

    • #13981
      Jen Cueva
      Moderator

      Great topic!
      I, too like Brittany, would welcome any alternative therapies along with my current PH meds. I think thos is interesting as my Daughter is a Registered Dietitian and what we eat definitely fuels and can help and hurt our bodies.

      I will try and follow this thread to stat more updated as you all share information.

      • #13985
        Brittany Foster
        Keymaster

        Hey Jen,
        That is great that you have a daughter who is a dietitian. I was seeing one for awhile back in my teen years due to an eating disorder, but never thought about seeing one to optimize what I’m eating to help manage this condition! Does she know if there are dietitians specifically working with those with heart and lung disease ? Would you mind asking her if there are any websites to look this up and find one in my area?

    • #13989
      Jen Cueva
      Moderator

      Hi Brittany,
      I do know that Dietitians do see patients of many diseases, some choose to specialize, she’s all over. I have Kidney Disease as well, and when my Nephrologist wanted me to see a Dietitian, I just had her g Be me tips, lol

      I definitely will ask her any suggestions, she was with me today , taking me to appts and errands, so I’ll come back and post once I talk to her again in the nect few days.

      I do know some Dietitians will do online and telephone consults as well. I’ll see what I can find out from her as I don’t want to give you any wrong information, lol

      • #14005
        Brittany Foster
        Keymaster

        Thank you Jen,
        It’s great that you have those connections within your own family ! Looking forward to hearing back from you later. Hope your day goes well and your appointments go well.

    • #13998
      Iris Alexander
      Participant

      Thanks Brittany for reminding about those massages. My girlfriend use to get them for lymphdema but I never thought about needing one myself

      • #14006
        Brittany Foster
        Keymaster

        Check it out ! If you were closer to me I’d recommend the one I go to, but I’m sure there’s a way to look that up in your area ! Keep me posted if you’re thinking about going and if you go let me know how you feel about it !

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