Finding Alternative Treatments

[Brandon allen]

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?

[Ally]

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. 🙂

[Louie Lewis]

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

[Brandon allen]

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!

[Brandon allen]

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 Then there is the outdated way of filling out forms at a new doctor’s office and wondering if they are worth the time or money.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!

[Ally]

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. 🙂

[denny]

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

[Ally]

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. 🙂

[Iris Alexander]

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

[Brittany Foster]

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.

[Brandon allen]

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.

[Brittany Foster]

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!

[Iris Alexander]

Thanks Brandon I will check out that link

[Iris Alexander]

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

[Brittany Foster]

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!

[denny]

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

[Brandon allen]

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!

[Brittany Foster]

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!

[Jimi Mcintosh]

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.

[Brittany Foster]

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.

[Jen Cueva]

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.

[Brittany Foster]

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?

[Jen Cueva]

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

[Brittany Foster]

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.

[Iris Alexander]

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

[Brittany Foster]

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 !

[Jen Cueva]

I just wanted to post this so that those who have newly joined may find it helpful. How do you feel about “alternative medicine”? Did you discuss this with your medical team? If yes, what did they say?

Many things are targeted at alternative treatments; marijuana is not legal here in Texas yet for medicinal purposes. But I know many states where it is legal. Please share your thoughts here.

[Jen Cueva]

About the post where @brian mentions the use of aloe vera juice, I wanted to bring this post back up. Alternative therapies can come in various forms.

Have you or your loved one used any alternative therapy to anything related to PH? Of course, any therapies, including alternative ones, should be run by your PH team first.

[Jen Cueva]

I wanted to bring this topic up again since we have so many new members. Alternative therapy can complement our treatment plans. But, we also must check with our PH team before starting any alternative treatments.

Most people think alternative and think scam or associate this with many other things.

Any alternative treatment, including massages, need to be approved by our medical team.

Has anyone tried CBD or medicinal marijuana to help any of your PH symptoms? If so, how is that working? Are you still taking using these alternative therapies? Did you discuss this with your PH team?

[Alicia Burleson]

I am very interested in alternative treatments for PAH especially for my almost 6 year old grandson.

I have found this article which might help others. Let me know what you all think. TY

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6055327/

 

[Jen Cueva]

Hi @aburle, thanks for sharing this information. Have you or your family spoken with your grandson’s PH team about these alternative treatments?

I have been to a functional medicine doctor before, and he encouraged looking at some alternative therapies. My PH doc at that time did not recommend that. But, I also have chronic kidney disease too.

If you have experience with any of these therapies, I would love to hear more. Or, what your grandson’s PH team had to say about this.

My post-COVID neurologist suggested melatonin for the antioxidant. Has anyone used melatonin for any other benefits besides sleep?

[Author]

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