Steve Dragoo
Forum Replies Created
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Hi Charlene – glad to hear from you too. It must take a lot of your time to monitor and post so much on PFNews and I am definitely finding this channel plus PFNews YouTube the place to go for current ideas, events, potential remedies on the horizon, friendships, and so very much more. I appreciate your efforts.
I am willing to try anything within reason after investigating because this disease is progressing and I realize even though it was officially discovered in May 2018, I had clear symptoms in late 2016.
Thanks for allowing me to start a new forum about travel – discounts. I can always submit to you first and it will be a few days before I have this worked through.
Hope you will be at peace and rest over the holidays gaining in strength from all you do.
Stay healthy,
SteveD
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Hey Denny – that’s terrific news. I read a little about GLPG1690 a while back and just emailed the doc to see what she can do – also about Wei Institute. I loved playing hockey on frozen ponds when I was a kid. You are on the right track – healthy exercise, healthy eating, healthy breathing exercises.
I think Wei quotes their herbal formula or at least I saw a couple of them somewhere. This forum is a good place to keep each other and others informed. I just concluded pulmonary PT and will be joining the neighbourhood gym until I return to the Philippines next spring. Also, I take a couple of pills that I believe are helpful: Serrapeptase (enzyme for scar tissue) and Astragalus. I keep you posted… – SteveD
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Hi Denny – great! Thanks for your response. I have only briefly looked at WEi and have to learn what’s available. So do you go to their nearest location or other? That will present a problem to me next March as I will be in the Philippines if all goes well. Also interested in your tests this week if you want to share…SteveD
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Great Charlene – sharing is how we might find a significant way to live longer. Is it the same article you shared in another thread? Thank so much – SteveD
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Hello There Charlene,
Good to hear from you and I like the article a lot but have no real resource to find all of those herbs and don’t know who to trust about them. My breathing difficulties have slightly increased so I started researching again “what’s out there” and appreciate your latest article. I know very little about herbal remedies as they can be very complicated. I have a friend’s wife trying to locate the herb concoction mentioned in PRMas she is from S. Korea and has her PHD in nursing – she recently started a nursing college in Malaysia. Feifukang, also known as pulmonary rehabilitation mixture, comprises eight herbs including Astragalus membranaceus (Fisch) Bge., Codonopsis pilosula(Franch.) Nannf., Ophiopogon japonicus, Schisandra chinensis, Panax notoginseng(Burk.) F. H. Chen., Bulbus fritillariae thunbergii, Rhizoma anemarrhenae, and Glycyrrhiza uralensis, which is designed by our group based on clinical practice and drug screening for several decades”.
The Astragalus (mentioned above) I have been using a few months and recently increased dosage 3 pills 2x daily. Starting today I will begin using Serrapeptase as it is reported to reduce certain scar tissue by attacking a protein (caution read up carefully before trying as it can be dangerous). Considering I would like to spend a few decent years with my wife, I am more willing to try potential remedies with uncertain results, including clinical trials that start next year.
As an aside and thinking of vacation we can all use, I may have some vouchers that help reduce costs at 400.000 hotels and I think they have food vouchers too. This group has a couple of different types and the other is specific to certain hotels in various place at a fraction of the total cost. We plan on trying one on Phuket, Thailand sometime in spring 2019. I can post more info sometime if you are ok with that.
Stay safe and well as you can…
SteveD
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Hi Charlene,
I read the PDF just now and curious if you found PRM or tried it?
Hope you are surviving and thriving best you can…
SteveD
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Thanks again Bob. Yes been on PF news a few months now. There are some vids on YT regards PF to help caregivers and family understand what we are going through to help in a more positive way.
Yep – grab an extra bag for pills + pills. Previous comment was a bit facetious knowing we would need to buy another suitcase under current prescriptions…
Months ago I signed up for phase II w a foreign entity but not expecting to hear anything from them for a few months.
Best to you – enjoy FL been there many times.
SteveD
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Hi Charlene – So it seems you go from the normal frigid to just the downright cold for sunbathing and relaxation. Nice – stay well… SteveD
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Thanks – I can just hear insurance companies and the US VA Hospital system now. – You want us to spend how much on you each month and there is no clear efficacy??? Assumedly a combined pill would be good but that probably has too many patent problems.
Healthy lifestyle (food, rest, water, exercise – think NEW START program) and stress removers seem a better option. It would be good if there were clear studies on essential oil(s) and herb supplements for ILD or IPF but they seem a little too vague for now. I have a friend who was a successful Orthopedic Surgeon but left the business because he discovered the right foods are a better option. He is known for saying, “Food is for living people; pills are for dying people.” He has a point…
Appreciate your time and response…
SteveD
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Hi Charlene – I asked my doctor the stage and speed of my IPF and she commented when I do my next test in January she will better be able to answer that one. Obviously, we want to know that as it will determine if and when I return to the Philippines.
Glad to hear Ofev helps you. Now would be a good time to be in AZ! LOL – Happy successful week to you (all) – Steve
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Hi Charlene,
Definitely wait until June or July to meet up there where you are but I will return to the Philippines in March if I can.
At the doctor yesterday was the first test that O2 dropped to 87. I am in PT and get my heart rate higher than at the doctor and my O2 there only once dipped below 90 briefly. So use when needed daytime and all night hooked to CPAP (that I start tonight – get home O2 unit next week) as I have light apnea unless on my back – then worse.
Best to you,
SteveD
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Hi Charlene,
I had a contrast dye mri on my kidneys a while back and getting headaches from it, which affects many people that do this procedure. There is a lawsuit started against the company providing the product but idea if it will be successful. Just thought I would mention it in case you did this…
SteveD
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Hi Charlene,
Thank you for your kind offer. I know if we lived in proximity we would be friends.
I am getting 2 liter M6 portable I believe. They will call me to discuss soon. and in home unit – now I’m really starting to feel old…
SteveD
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Hi Marta,
Thanks for starting this. I was fitted for oxygen today and will travel overseas in a few months.
SteveD
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Hi Charlene – sorry I just saw your question to me today. K2 m7 (not K1) directs calcium to the bones where it belongs (yes cells use some calcium too intra and extra cellular). D3 by itself can cause calcium to go to the wrong places such (think cardiovascular plaque). When I frist started D3 K2 m7 was unknown to me. Eventually some white papers appeared but they did not know dosage ranges. Now more is known and here are three references below. I take 200mcg’s per day and recently increased D3 to 3000 iu (about 75 mcg).
Here are a few papers of many that may help:
- https://riordanclinic.org/2013/10/vitamins-d3-and-k2-the-dynamic-duo/
- https://info.dralexrinehart.com/articles/vitamin-d-and-vitamin-k2-benefits connection
- https://articles.mercola.com/sites/articles/archive/2013/10/19/vitamin-d-vitamin-k2.aspx
Hope this helps… SteveD
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Hi Charlene – You speak so clearly what I have experienced and I try to alert my wife by talking it over and sending her a short video or two from youtube. Being apart from her 7 months is more difficult than this illness at least for now and we are not sure what God’s plan is at the moment but we do know He wants us to come Home and we are never facing this increasingly lifeless world alone. – SteveD
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Hi Bernie – I have a bone density test soon but r a different reason. I have a flattened pituitary which means my hormones (think endurance and strength) are affected and the bones. I take D3 with K2 to help bones as I was diagnosed low D a while ago. The K2 puts calcium in the right place… Success to you. – SteveD
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The D3 reviews I have looked at have repeatedly suggested taking K2, m7 (not K1) because D3 can put calcium in the wrong places; K2 sends it to the bones. When I first discovered this 3 years ago there was no recommended dosage of K2 as no one knew. K2 can be found in some foods but typically not enough at the time of taking D3. I get my D3 and K2 OTC as prescriptions cost much more. I trust the sources I buy from as I know supplement quality is not very well regulated
Here are a few papers of many that may help: https://riordanclinic.org/2013/10/vitamins-d3-and-k2-the-dynamic-duo/. https://info.dralexrinehart.com/articles/vitamin-d-and-vitamin-k2-benefits-connection. https://articles.mercola.com/sites/articles/archive/2013/10/19/vitamin-d-vitamin-k2.aspx.
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Thanks Charlene – I emailed them and I am sure she will call as always before. – SteveD
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Hi to Charlene, Jean, Dick and et al.
I was diagnosed May this year but believe I had an onset of basic symptoms February 2017 when antibiotics did not heal my “pneumonia” while in the Philippines. At a 6-month follow up last week my pulmonologist suggested I start esbriet and after reading the helpful comments here I may do that but certainly curious which is better for IPF.
To help with the huge cost, if any of you served in the military get set up with your local veteran’s hospital. The care is similar to a HMO so it takes a little while to figure out the system (if anyone has questions I am glad to answer what I can about the VA system) but prescriptions are incredibly cheap based on income. I read recently a large research grant for PF is either done or in the works – there may be some assistance money available, also contact the PFF to see what they can suggest. Here is their website: https://www.pulmonaryfibrosis.org/ . There are other associations related to this disease such as IPF foundation, Patient support&resources but I know nothing about the last two.
Hope this will help you. I am naturally curious which is better esbriet or ofev. Success in healing and blessings.
SteveD
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Good to know. Thanks David.
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Hi Marta,
Thank you for sharing these. I am in PT but they are core strengthening and little about breathing exercises. These are good to know and share.
Best to you,
SteveD
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I am glad you remember that food/pills comment and our “friend” comment. Friend me on FB if you want. I first heard food/pill comment from my friend years ago and it has stuck because it is accurate. Here is his most recent newsletter (which you can sign up for if you want). This particular letter is pretty deep and usually, he and his wife have healthy nuggets in their news – you can go to past news at the top. http://northernlightshealtheducation.com/newsletters/NewsletterNOV_30-2018.html?fbclid=IwAR0S2Pdn87NsXwa93ujRwkeGc4GO1EJLqe_xm6N5XF75g-AZhuk8z2uR-C4
I avoid all meds I possibly can because they all seem to have side effects – some pretty unpleasant so I don’t see that improving the quality of life and frequently cause you to take another med for that unwanted effect – nasty spiral.
Stay warm… – SteveD
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Hi William,
I may face some VA challenges fr esbriet son. Which VA and how long ago?
Thanks,
SteveD