• Posted by john-styles on January 24, 2019 at 7:35 am

    I have usual intestinal pneumonia, diagnosed October 2017. When I was diagnosed I had 55% lung function and as of November 2018 I was down to 35%. I am on predisone 10 mg daily and will be tapering to try to get to o mg daily.  I use  portable oxygen. Yesterday when I did my 1 mile walk I started out with a setting of 5 on my pulse concentrator and usually have to stop at least 6 times to get my oxygen back up from low 80 or high 70 to 90. Not going more then 100 feet I noticed I was at 97! I turned it down to three within another 100 ft and was still at 97!  I then removed my oxygen and completed my walk not going below 90.  Last week I started treatment with a class 4 cold laser at my chiropractors office at 10 watts doing 4 minutes on front and 4 minutes on back for 4800 joules. I had Found Doctor Halls article on Pulmonary fibrosis he had used the laser on himself and now 4 years later had no new fibrosis and actually improved on his pulmonary function tests. I had found the Egyptian laser study for copd and results were positive. I do not quallify for drugs as I have cersois and do not qualify for transplant. I think Doctor Hall may be a hero for trying the laser on himself, Dr Hall is in Sonora California and partially retired.  Do not expect any study done on this as there is no drug money and do not expect a pulminologist to approve as it is not accepted treatment. I am  hoping and now have a positive attitude.

     

    terry-moriarty replied 5 years ago 19 Members · 194 Replies
  • 194 Replies
  • lynn-schmitt

    Member
    January 24, 2019 at 9:34 am

    Have you only had one laser treatment? Do all chiropractors use cold lasers in their therapy? This is Lynn (Dogwood)

    • Charlene Marshall

      Member
      January 26, 2019 at 8:45 am

      Hi Lynn,

      Nice to hear from you and I hope you’re keeping well!
      Definitely take a peak at Megan’s reply below about cold laser therapy in her practice. It looks like she left her contact information for you to learn more if you wanted as well 🙂

      Take care,
      Charlene.

    • steve-dragoo

      Member
      February 5, 2019 at 9:07 am

      Hey John – you holding up ok? Haven’t heard from you in a while so checking in – Steve

    • Deleted User

      Deleted User
      March 3, 2019 at 2:56 pm

      Hi all,

      I just met with a chiropractor who is willing to give me the laser treatments. I gave him the link to the study done at Cairo University and came home to look at it more closely and it seems that the link has been removed. Would anyone know why this was done. Perhaps because too much time has elapsed? No too versed in these things,so I wonder if anybody here would know.

      Thanks,

      Barry

  • lynn-schmitt

    Member
    January 24, 2019 at 9:45 am

    John Styles, I am interested in the article by Dr. Hall about cold laser. May I ask where you live and who performed your therapy?

    • steve-dragoo

      Member
      March 4, 2019 at 8:27 am

      @lo3241 Hi Barry – Dr. Hall will contact or you have your chiropractor contact him for the protocol.   Dr. Hall has a brief page he has started for this study and the link is here: https://ipflaserstudy.com/.  There are other things you can do to help IPF be less of an impact on your life but the laser is probably tops if the right protocol is used.

      Take Care – Steve

  • megan-zetter

    Member
    January 24, 2019 at 10:48 am

    Hi John,

    I am a chiropractor and use class IV laser in my office. I am so happy to hear that you are getting this treatment. My father passed away on the 20th of this month after battling PF for 6 years. I wanted to use it on him, but he simply lived too far away. I have no reason to believe that it will not offer you some benefit. What that will be, I do not know, but light therapy is powerful and NOT hogwash. I hope you all the best. I would love it if you would keep me informed with your progress — if you don’t mind. [email protected]

    Megan

    [email protected]

  • steve-dragoo

    Member
    January 25, 2019 at 12:59 pm

    Hey John – that’s a remarkable response. Kindly post the PF news link you referenced.  How long ago did you do this treatment and what did you pay? Stay well. – SteveD

  • Charlene Marshall

    Member
    January 26, 2019 at 8:41 am

    Hi John,

    Thanks so much for sharing this information with us, it seems to have sparked a bit of interest from folks on the forum. I’ve never heard of cold laser therapy before, really interesting! Do you know of other centers that also employ this option for patients with PF if it seemingly this effective? Would be so great to know that other areas are offering something that helps folks with their PFTs so much and hopefully even slows down their disease progression. Surely, some physician somewhere would pick it up and find some money for it if it is so helpful for patients. Do you have the article to share with us from Dr. Hall? Even if it is a personal / opinion piece about the effectiveness of this, not necessarily literature-based? Would love to read it if so.

    Thanks John, so glad this seemed to help you.
    Cheers,
    Charlene.

  • john-styles

    Member
    January 26, 2019 at 8:44 am

    Dr Hall is a chiropractor in California that has IPF, he has a web site ipflaserstudy.com  I had two treatments last week at a chiropractor here in Florida cost $40 a treatment and two this week with one planned Friday. The Egyptian study was done in Cairo by one of our country’s top scientist recognized by George Bush and Obama, his office for research is out of Georgia Tech.

    • Charlene Marshall

      Member
      January 26, 2019 at 8:47 am

      Thanks again for the information John, looks like you’ve given people lots of homework to research more about this cold laser therapy. So glad it seems to be working for you 🙂

      The only caution I have for folks is to be mindful of bias, and that the article isnt grounded in research or literature. I know not everything has to be, just my duty to outline this for people out there as a forum moderator. I will be checking it out myself for more information, but will be ‘proceeding with caution’ I think. If anyone finds more information that was helpful, please do share with all of us and I’ll do the same.

      Regards,
      Charlene.

    • diane-coggins

      Member
      February 1, 2019 at 7:16 am

      John Styles, we are also in Florida & wondered where you’re getting your laser therapy & also how you found a doctor that does this treatment ?  My husband has IPF & is on 6 liters 24/7 & has been turned down for a lung transplant because of esophageal dysmotility.  Good luck to you !

  • john-styles

    Member
    January 26, 2019 at 10:07 am

    Hello everyone.  The Egyptian study for laser for COPD was done by one of Americas top Scientist Mr Seyed, he has been recognized by George W Bush and Obama and his research office is at Georgia Tech.  You can find the laser study by googling ” Egyptian laser study copd”  I live in Florida and the cost from my chiropractor is $40 a visit. I had to supply my chiropractor with the Egyptian article and Dr Halls post for my chiropractor to treat me, I have been treated for two weeks and next week will be my third week. I have had some amazing results, I usually run 90 to 92 sitting or standing saturation level and still do at times but usually a day after treatment I have been getting some 96 to 98 saturation levels. I do not think this is a cure but may stop or slow the disease. Anyway, I am feeling better.  Dr Halls web site is ipflaserstudy.com not all chiropractors use a cold laser and the one Dr Hall is using is a cold laser 4, seems the 4 penetrates deeper.

     

    • Charlene Marshall

      Member
      January 27, 2019 at 8:43 am

      Hi Everyone,

      John was kind enough to email me the journal regarding laser therapy from the Egyptian Journal of Bronchology. You can download it here for free if you’re interested in reading it:http://www.ejbronchology.eg.net/  it’s called Low-level laser therapy in chronic obstructive lung disease. 

    • terry-moriarty

      Member
      March 3, 2019 at 5:12 pm

      Diane,

      I too suffer from a esophageal dysmotility (nutcracker esophagus). When I investigated lung transplants in 2012, I was told it may disqualify me because it can’t be cured and may damage the new lungs. I have additional disqualifying conditions.

      I’m delaying my decision on the laser treatments for a couple of months. I’m also obese and have been on a medically supervised diet. So, far I’ve lost 40 lbs. My pulmo says that weight loss can result in lung stat improvements. I think I should test out one change before introducing another one, so I know which is actually working.  Have PFTs scheduled for May. If no improvements, I’ll probably try the laser treatments.

  • steve-dragoo

    Member
    January 26, 2019 at 11:25 am

    Hey John – How did the chiro determine how many sessions and agree to use this experimental therapy? Seems he would be putting himself at considerable risk.  But this is amazing news. Thanks for sharing… – SteveD

  • lynn-schmitt

    Member
    January 26, 2019 at 12:58 pm

    Hi, Charlene,
    I cannot find Megan’s reply concerning laser therapy. Could you send me the information?

    • Charlene Marshall

      Member
      January 27, 2019 at 8:46 am

      Hi Lynn,

      Sure, I will go back to try and find it. I thought it was on this thread, but I agree with you, I can’t seem to find it either now. The forums have been very fussing this weekend, not sure what is going on: some folks say they’ve posted things and I can’t find them, and other posts that I remember were there aren’t anymore. In any case, I’ll go back to my e-mails and see if I can track it down. I think it said Megan herself was a chiropractor and uses cold laser therapy in her clinic/office. Let me see what I can find…

  • steve-dragoo

    Member
    January 26, 2019 at 1:02 pm

    Or post it here maybe…

  • john-styles

    Member
    January 27, 2019 at 6:35 am

    Hello

    This laser study done in Cairo was published last fall 2018, there is some reference to people being treated for IPF, seems everyone responded but treatment was only for 14 days. Dr Hall used the laser on himself 4 years ago and is still using it.  I know you can not compare animals to humans but there is a article on google about a Westie dog that had pulmonary fibrosis and the vet used the laser on the dog, the dog did not progress with the disease and died of some other cause 5 years later.  Chiropractors use the class 4 laser and know of the benefits and Dr Hall said it needs to be a class 4 laser to go deep enough. These are not cutting lasers.  I figured what have I got to lose? This is a terminal disease with aprox a 5 year life span. I was deteriorating. I googled chiropractors with class 4 lasers and the first one I talked to was familiar with the laser and had seen results for other issues but not lungs. When I shared with him the information from Dr Hall and Egyptian study and told him this was a terminal disease he agreed to treat me.  The reality is there is no big profits for research on lasers for pulmonary fibrosis so no study will probably be done soon. I know we are all dealt a bad hand with this disease.  As for me I am doing the laser, may not be for everyone.  I just wanted to share what appears to be something good when there is not much that can be done for this disease.  Hope you investigate it and make up your own mind.

    • Charlene Marshall

      Member
      January 27, 2019 at 8:48 am

      Great reply John, thanks for clarifying that. I agree, since it isn’t grounded in literature, not everyone may be interested in seeking out this therapy but if you are, seems like it could be worth it. I am really glad its helping you! I posted the direct link to the article you emailed me (thank you for that) above so hopefully those who are interested can check it out. 🙂

      Appreciate all the time and thoughtfulness you’ve put into the correspondence regarding laser therapy. I’m sure it will give folks lots to think about.

      Talk to you soon,
      Charlene.

  • steve-dragoo

    Member
    January 27, 2019 at 10:31 am

    Hello, hello Charlene, John, et. al.,

    I reached out to Dr. Hall and he responded pretty fast. Here is what he said:

    Hello Steven,

    I would be pleased to register you for our IPF study.  I am attaching an IPF Laser Study Questionnaire for you.  What is required by our participants is to send copies of your Pulmonary Function Tests and copies of Lung CT scan reports. All personal information is kept confidential.  My mailing address is on the bottom of the Questionnaire. Have you started Laser Therapy yet?  Do you need help in locating a doctor with an appropriate laser? I would be happy to help you with that.

    Thank you for participating in this important study!
    Dr Andy Hall.

    I also started researching buying a class IV laser because I will be unable to go to a local clinic in a couple of months and if it works I would want one handy.  This new info we have thanks to John may be nothing short of amazing!!!

    steve

  • Charlene Marshall

    Member
    January 27, 2019 at 3:47 pm

    Awesome, thanks for posting this Steve!
    Sounds like it might be easy to get involved in Dr. Hall’s study if you can obtain copies of your reports for him. Do you think you’ll proceed?

    I didn’t know you could buy the lasers yourself. Where have you found some within your researching, Steve? Are they expensive? Goodluck and keep us posted.

    Charlene.

  • john-styles

    Member
    January 27, 2019 at 4:12 pm

    I do not know if purchasing a class 4 laser is a good idea,  medical and veterinarians use them and you would need  instruction and practice on how to operate one, I did notice a holistic center had one.  Seems the laser works but we are in uncharted territory, Dr Hall used it twice a week for a month and then once a week. The Egyptian study they used it 5 times a week for two weeks, I have used it twice the first week and 3 times the second week and I am scheduled for 3 times this week.  I also noted they used it on other groups and had positive results and at the end of the study it mentioned no funding for the study.  Again I do not think the laser heals but it may prevent the disease from progressing if we are lucky.

    • Charlene Marshall

      Member
      January 27, 2019 at 8:09 pm

      Hi John,

      Thanks for writing, and I agree with you: probably  best not to operate any type of laser on our own since we’re untrained for it. I see Dr. Hall joined the forums, which is really cool. Am about to reply to him now 🙂

  • steve-dragoo

    Member
    January 27, 2019 at 5:02 pm

    Hi All – after I go to LLLT  a few times, I will be comfortable understanding the process but I need to see their equipment to decide what to do.  I briefly looked for class IV but no satisfying answers yet. The laser is not a cutting laser and it is best to not touch skin much and keep it moving. The rest I hope I can figure out.

    Dr. Hall asked for medical history and I can get that through the veteran’s website, so they will have me in their system.  I certainly will ask Dr, Hall to get a chiro for me back east.

    John, I deeply and greatly appreciate you posting this incredible find. – Steve

    A quick footnote:

    Amla has increased my O2 readings consistently 3 or 4 points and slowed my heart rate 10 – 20 BPM.  But even with that, I get short of breath sometimes.  I think that is because our lungs do not get rid of CO2 efficiently which makes finding meds/supplements/foods/exercise important. If anyone has insight please share for each other…

  • andrew-hall-dc

    Member
    January 27, 2019 at 5:11 pm

    First of all, Charlene, I want to thank you for your dedication to this website.  It’s amazing, and you are doing a fantastic job!   I thought I would join this forum.  I have had a huge number of IPF patients contacting me due to this forum.   As per the last post by John, you must be a doctor to purchase a Class IV laser, you must be ‘credentialed’ for Class IV lasers, and also, for most people they are costs prohibative.  Mine was $27,000.  Since 2003, I have owned 4, currently have 2.

    Charlene mentioned that laser for IPF is not grounded in the literature.  Of course, that is exactly what we are trying to do with this study.  I have done other research, lastest regarding a manual I wrote that included 269 of my patients.  That research was not published, but I expect the research for IPF will be.  I want everyone to know that I would be happy to answer any questions regarding laser for IPF, either on this forum or by personal email.  The results from all the IPF patients using laser have been positive.  The results John found are not unusual.  Increased function and oxygenation.  Do I consider Laser Therapy to be a cure? The simple answer is NO.  A cure would eliminate the fibrous tissue and the laser does not appear to do that.  But the results so far show that it arrests the formation of new fibrous tissue and increases lung function and increases oxygenation.  Not all IPF patients that use laser are enrolled in the study, but they do stay in contact.   The study only recently was begun due to the fact that all those using laser responded so well.  It could no longer be ‘coincidence’.  But my experience with research is that you can’t go by 12-15 patients.  We need a lot of patients for this study for it to be valid.

     

    • Charlene Marshall

      Member
      January 27, 2019 at 8:41 pm

      Hello Dr. Hall,

      Thanks so much for joining our forums, and for all of your kind words regarding this site. It is filled with such caring, supportive and helpful people – we’re pretty lucky to have such a unique “community” via this platform, and one that makes it so easy for us to communicate from all over the world. Glad you’ve found us!

      I agree with you about the importance of being educated when it comes to using a laser, in any form of treatment for IPF. That cost would certainly prohibit most folks from purchasing one privately, but would somewhere that sells these even permit someone to buy one without a medical license? I’d be really concerned about improper use.

      Thank you so much for your willingness to answer questions Dr. Hall. I highly encourage people to do their research, and connect with you if they want to learn more but of course involved their current care physicians too whenever possible. I am really happy to hear the positive outcomes you’ve had thus far, and look so forward to hearing more about this as the data emerges. I’m really glad John brought this to light for so many folks!

      Take care,
      Charlene.

      • terry-moriarty

        Member
        January 29, 2019 at 10:35 pm

        Dr. Hall,

        Is your research study strictly for people with IPF?  I have Chronic Hypersensitivity Pneumonitis. So I have fibrosis.  I’m on 6 lpm oxygen 24/7.  On my last PFT, FVC was 39% and DLCO of 19%. I have no other symptoms except the need for oxygen.  Am I a potential candidate for your study?

        Thanks

      • Charlene Marshall

        Member
        January 30, 2019 at 7:54 am

        Really great question Terry! I would be curious about this as well, as I know a few folks living with HP who access our forums. I hope you’re doing well, it’s been awhile 🙂

        I’ll keep my eyes peeled for a response from Dr. Hall and I am really glad you asked that question!

        Sincerely,
        Charlene.

      • andrew-hall-dc

        Member
        January 30, 2019 at 9:20 am

        Hi Terry,

        This is one of those things that lately I have been giving a lot of thought about.  I can tell you that in my experiance that a study needs to be well designed for it to be valid and presented.  I don’t think that several conditions should be ‘lumped together’.  Having said that, I think the best thing to do is to have a study of strictly IPF patients, and a side study of other Fibrosis conditions.  So, the answer is yes.  Lets face it, we can’t wait on the NIH or any other organization to take the bull by the horns and do these studies with laser.  It’s just not going to happen, and if it does it will be so far in the future that it really won’t help us with these diseases that we all suffer from now………

      • andrew-hall-dc

        Member
        January 30, 2019 at 8:21 pm

        Hi Terry,

        Had no idea you were in Sacramento.  I would like to suggest Dr McGinnis.  I have known him professionally for decades and in fact I personally credentialled him for Class IV laser many, many years ago.  He has a Klaser that I highly recommend.  Please tell him hello for me!  Dr McGinnis phone is:  916-929-8155

        Andy

      • Charlene Marshall

        Member
        January 30, 2019 at 8:46 pm

        So glad your’e able to be part of our forums and help out folks looking into laser therapy Andy. Very much appreciate it, and I hope Terry gets connected to see if it helps with HP. Wouldn’t it be interesting to eventually cross-reference the studies and see what happens to both diseases when treated with laser therapy? I’ll keep my fingers crossed that we can move forward with this eventually.

        Hope whenever you are it is warmer than the -35 degrees celsius it is here in Canada at the moment. Sure makes breathing outside difficult for those of us with IPF.

        Take care,
        Charlene.

      • terry-moriarty

        Member
        February 4, 2019 at 4:37 pm

        Have an appointment for 2/25.  The person who answered the phone knew exactly what I was talking about, so that’s a good sign. Dr. Hall, is this a specific set of treatments? or more of an on-going commitment? They are kind of expensive.  Thanks

      • andrew-hall-dc

        Member
        February 4, 2019 at 8:30 pm

        Hi Terry,

        Yes, there is an ongoing commitment to laser.  I continue to use laser every week, and expect to forever.  I don’t know what the fees that the doctor charges, but it might pay to shop around, no use paying more to a doctor for the exact same service/protocol that you can get from another doctor cheaper.

        Andy

      • andrew-hall-dc

        Member
        February 10, 2019 at 1:48 pm

        Hi Charlene,

        I have completed the essay on laser therapy.  I would like to forward it to you. It is done with my Word program.

        Could you give me an email address to send it to?  I would love to get some feedback from you after you review it.

        Thanks, Andy

    • lynn-schmitt

      Member
      February 8, 2019 at 8:47 pm

      Hey, Steve,
      How do you take Amla, pill form or other means?
      Just curious,

      Lynn

  • steve-dragoo

    Member
    January 27, 2019 at 6:37 pm

    Thank you Dr. Hall!

    • andrew-hall-dc

      Member
      January 27, 2019 at 10:29 pm

      Thank you Charlene,

      The thing I first noticed about this forum was the warm caring supportive attitudes.  I felt very drawn to it.  I think that all of us that have been diagnosed with IPF are ‘in the same boat’ and we can really relate in ways that even our own families can’t do.

      You are very insightful about Laser Therapy.  Class IV lasers are not toys. Only medical professionals are allowed to purchase them.  There are some dangers involved, for example even a quick flash to an unprotected eye will cause permanent damage to the retina.  As I mentioned, you must be credentialed to use a Class IV laser.  I used to credential other doctors.  A Class III laser is much different, lay people are able to purchase them, BUT realize that Class III lasers only have a power level of up to 1/2 watt, not nearly enough power to penetrate the chest wall and get deep into the lungs.  They are not adequate for use for IPF.  I highly recommend at least 10 watts of power to get to the target tissue (lungs).

      I too am thankful for John for bringing Laser Therapy to light for a lot of people.  I feel that there are alternative treatments that can be very helpful for IPF like Stem Cell Therapy.  I’m for ANYTHING that will help an IPF patient.  But patients can’t make choices for themselves if they don’t even know what choices are available to them.

      Again, thanks for allowing me to join this forum, it is very impressive…….. and I feel somehow like I”m ‘at home’ on this site.  Looking forward to sharing some of my artwork on the hobby thread.

      • Charlene Marshall

        Member
        January 29, 2019 at 2:06 pm

        Hi Dr. Hall,

        Thanks for your reply and for contributing to post such helpful and supportive information to our forums! We’re very lucky to have this platform for supporting one another, I know as a moderator, that it is a true privilege to be among such wonderful people. Glad you felt that way upon joining us, everyone is very supportive and helpful.

        Makes complete sense re: the lasers and the importance of holding a license in order to purchase and use them safely. Its a really interesting topic that John brings up, and certainly one I am going to spend some time reading into more in the coming weeks. I’ve heard there aren’t any credible stem cell tests yet for the treatment of IPF, is this true? I know UCLA is doing some leading research in this area, but I haven’t heard of any other centers. I am curious for this to start emerging, as stem cells have been used in other areas of medicine very successfully. So far what I know is that any paid stem cell trials are scams for patients.

        I look forward to continuing to get to know you, and thanks again for joining us!

        Charlene.

    • terry-moriarty

      Member
      January 30, 2019 at 7:03 pm

      Thanks for the quick response, Dr. Hall.  I’ll start looking for someone near Sacramento.  Will be watching this space to see how others are doing.

      • Charlene Marshall

        Member
        January 30, 2019 at 8:47 pm

        Hi Terry,

        Please circle back if you wouldn’t mind and let us know how you make out with connecting with Dr. McGinnis. Goodluck to you and I look forward to hearing from you next.

        Warm regards,
        Charlene.

    • terry-moriarty

      Member
      January 30, 2019 at 8:32 pm

      Thanks so much for the referral.

    • andrew-hall-dc

      Member
      January 30, 2019 at 10:56 pm

      Hi Charlene,

      I want to thank you again for the amazing job you are doing moderating this awesome site.  You know, when I joined I really wasn’t sure how well I would be welcomed.  It has been incredible.  I seriously have never in my 66 years seen such a loving, supportive and caring group of people.  I LOVE this site.  Having IPF I really do feel at home here. We can ALL really relate with each other.

      I know that I cannot morally or ethically bypass people with Usual Interstitial Pneumonia, HP or any other fibrous lung disease in an important study.  They must be included as their lives matter! We all need to look after each other.

      Yeah, the country and Canada is in a deep freeze.  The wierd thing is that where I live at 4,500 ft, the last 5 days or so has been unseasonable warm.  I went to the lake fishing on Friday, and it was a gorgeous 65 degrees.  It’s beautiful there, and when I go by myself like on Friday it is like a spiritual time for me.  Lots of contemplation, thinking and making mental lists of all I want to accomplish and how to do it.  Catching fish is almost a distraction.  I caught and released 8.

      You might realize that I am dedicated to what I do.  I try to respond to peoples questions right away. But Tuesdays are not good for that.  I think I mentioned that I semi-retired last April and I work a day and a half a week.  Tuesday is my full day, and then Thursday afternoons.  Yesterday I left for work at 7:45 am and I didn’t get home until 8:15 pm.  By the time I got some dinner I was just too exhausted to get on the computer.  When I work, I really work.  But the good thing is that working a day and a half means five and a half days off!  I’m loving it, and it gives me time to work on the things I’m dedicated to.  I keep wondering when to work on the 3rd edition of my manual, I’m out of the 2nd edition and need to print more. I will find time, somewhere, but sometimes a guy just needs to ride his Harley or go catch a fish! We need to enjoy the time that we have on earth, and having something like IPF makes it even more important.  Anyway, Charlene, know that you are loved by everyone…….

      Blessings,

      Andy

      • Charlene Marshall

        Member
        January 31, 2019 at 8:37 pm

        Hi Andy,

        Thank you so much for your kind words. I read them this morning, but then didn’t have a chance to get back online, and they truly set my day off to a good start. I am so glad you found the forums, and thrilled that you feel welcome and supported here. I couldn’t agree more with you re: the supportive, kind and caring nature of everyone on this site. It really is such a unique place!

        It would be so interesting to eventually see the effects of laser therapy on UIP, NSIP and HP patients as well, since all these diseases are linked with the common thread of lung fibrosis. Maybe someday!

        So many people on the forums enjoy fishing, and I am so jealous. Do you eat what you catch Andy? Fresh fish and seafood is the best. I will miss this truly after I have my transplant, as I read recently patients aren’t supposed to have it after getting new lungs. The temperature and weather sound beautiful there! It seems many parts of the world are “unusually” or unseasonably either warm or cold. I guess we have global warming to blame for that one.

        No problem at all re: taking time to reply to everyone. I can’t keep on top of it all some days either, and hope folks know that I’ll connect as soon as I can. You sound very dedicated to your work, but please don’t work too hard and ensure you find that good balance of doing things for you and for others. 🙂

        Take good care and thanks again for joining us on here!

        Cheers,
        Charlene.

    • steve-dragoo

      Member
      February 9, 2019 at 3:54 am

      Hi Lynn – I take Amla in fine powder in some hot water and started with a half dose sometimes 2x per day.  I bought it through Amazon.  Went to my cardiologist who is from India and he laughed when I told him and said good news.

      It is a little tricky to dissolve so I let it sit a few minutes then stir and add more water more stirring. Also I have a small sealed jar which helps – put the water in first.  Hope it helps you. – Steve

  • steve-dragoo

    Member
    January 28, 2019 at 6:17 am

    Welcome home, Dr. Andrew!

    You are correct, people here can share and understand certain aspects of this disease better than family and slowly educating and explaining to them is important. Without a cure or stoppage, IPF final stage can be very disconcerting for our loved ones.

    Would you be willing to share a little history about your IPF? When did you first discover it and how long do you think you had it before discovery? As a physician, I will assume you are more aware than most of your body when changes come about.

    Regards class IV – fully understand.  I will be out of US in the Philippines soon and that was one reason I am looking for class IV.  I have two family members as doctors, one of them is in the Philippines. Also a few nurses and pharm sales in the fam too.  I worked cardiology in the US Navy and greatly enjoyed the experience. Never one to be shy about learning new things, this is a special one to my heart but if I can’t do – no worries.  Just glad you joined us…

    Blessings – Steve

    • steve-dragoo

      Member
      January 31, 2019 at 8:47 pm

      Hi Charlene – I forgot to mention I go for a consult Wednesday to start laser therapy.  Is it available around you anywhere? I did not know you are scheduled for a transplant and maybe the therapy would help you. I am sure there are strict – maybe stringent requirements you must adhere to in order to maintain your position for that…

      Go throw some water in the air outside and add it to your “bucket” list.  Peace in your heart – you work so hard for us here… Steve

  • andrew-hall-dc

    Member
    January 28, 2019 at 7:06 pm

    Sure Steve, would be happy to share my story.

    Just over 5 years ago a developed a cough.  Didn’t think too much of it, but it slowly over a long period of time got worse and worse.  I figured I had maybe aquired a new allergy or something.  Then, I soon noticed that when hiking in the mountains where I live I started getting winded easily.  Really wasn’t like me.  And then I had to swim a hundred yards out to my moored boat at a lake at 7,000 ft elevation, (the same lake I got my mile swim merit badge as a boy scout).   This should have been a piece of cake swim, but less that  40 yards into it I ran completely out of breath.  Really thought I could drown out there.  I made it to another boat 20 yards away, and after a while was able haul my body into it.  I borrowed a life vest and after a 15 minute rest trying to catch my breath at managed to get to my boat with a lot of effort.  I would have died had it not been for the life vest. HUGE WAKE UP CALL!  The next week I called my family doctor and he referred me to the pulmomologist.  I should have not waited so long with the cough that got worse and worse, and yes, I am a doctor, but I’m still a guy!  I feel the ladies smiling here, because there is a lot of truth to that statement.  Women are much more likely to seek care earlier than men……    Anyway, the pulomonologist did a CT scan and Pulmonary Function Test and we sat down together.  He said I had IPF and the it was going to take my life.  Shocked, I asked how long I had.  He said I expect to put you on oxygen in 4 years and you will likely be dead in 5.  I told him that I was just way too busy for that what with my very busy practice and Laser teaching schedule.  Besides, hell, that just didn’t fit with my long term plans.  The thing is that the males in my family have great longevity.  My 96 year old father still runs 20 minutes before his circuit training at the gym 3 mornings a week!!!  He is still a board member of the Credit Union he founded 70 years ago.  So, the pulmonologist rx’d Symbicort.  On the way home from the Pulmonologist I cried for a short while.  Not so much as that I was just handed a death sentence, but because 23 years earlier I had a VERY serious health issue and was told by 4 diffenent Neurosurgeons that I would never work again and that they would have me strung out on Oxycontin and I would spend the rest of my life on the couch.  It was hell recovering from that problem but I did manage to get myself back to work in 18 months.  I have been an over-achiever my whole life and those were very dark days for me.   I didn’t want or need another serious problem.  Therefore, the tears……    But just like the health issues I had, the neurosurgeons could not help, I went back to my Chiropractic roots and overcame that problem.  With the IPF, I decided that there was no cure and I need to get back to my roots again.  Being an expert in Laser Therapy, I began treatment on myself using my best professional judgement as per dose, frequency, etc.  Had no idea if it would help, but the International Laser Conferences I had attended had had a Cardiologist from Denmark that cured Myocardial Infarction, a Nephrologist from England with success on Kidney issues and a doctor from Russia that cured Pancreas issues.  Why not try it for IPF?  What the heck did I have to lose?  Low and behold, my subsequent Lung Function tests improved.  Subsequent CT’s showed no additional honeycombing.  I’ve been very faithful using the laser every week.   Presently, over 4 years later I’m better than when all this started!

    So Steve, ask a simple question and get a five page answer!!!!!   Sorry…….. (:

    Blessings everyone……..

    Andy

     

    • Charlene Marshall

      Member
      January 29, 2019 at 2:13 pm

      Thank you so much for taking the time to share your story Dr. Hall. I always appreciate learning about others, and their ‘journey’ to diagnosis as it seems so different for each of us. I was 13 months before I had a final diagnosis, and learned only in hindsight that the doctors suspected it was IPF for 4 months but were determined to find something else, given I was 28.

      I bet ending up short of breath while swimming was really scary, I am so glad you had access to a life vest to help keep you afloat. Not being able to complete an activity was my cue that something was wrong as well. I was in Australia and climbing the Sydney Harbour Bridge, which seems like it would be strenuous climb but really isn’t. When I became super winded, after playing hockey and swimming for years, I knew something wasn’t right. Are you still on the Symbicort? I was prescribed this as well but can no longer get a deep enough inhalation to take in the medication of a turbuhaler. I had to switch inhalers, and I am on several now, although not sure if any of them are doing any good or not.

      Your story is amazing and I am so glad that you did give the laser therapy a try for IPF using your professional knowledge and judgement. This is huge for many of us, if we consider this alternative therapy and gain some success in slowing down the disease progression! Thanks again for sharing and being so thoughtful in all of your replies 🙂

      Cheers,
      Charlene.

      • rebecca-schrantz-lilly

        Member
        February 12, 2019 at 10:42 pm

        Dr. Hall,

        thank you so much for sharing your story as well as all of your information. I really appreciate the humor in a story about something so tragic as Pulmonary Fibrosis.  If it were not for some humor, I would be hysterical.  My husband was diagnosed in 2014 and it after a few months of pretending it really was not the case, I spent the next few months crying.  I am now very proactive in my husband’s health.

        Thank you again for all your input!

        God bless all of us

      • Charlene Marshall

        Member
        February 13, 2019 at 6:45 pm

        Hi Rebecca,

        Thanks so much for chiming in and joining this topic thread. I completely agree about the importance of humour! Somedays I focus on the emotional, tough stuff and some days I choose humour to get me through and I know I am better off the days I choose to laugh. Its important to find a balance but so thankful we can find humour amidst tough situations still!

        Take care,
        Charlene.

  • steve-dragoo

    Member
    January 29, 2019 at 9:54 am

    Thank you for sharing Andy!

    We can all learn from your experiences and add to the collective (No I’m not a Borg)!

    So if the class IV helps the heart, kidneys, etc, – would it help with fluid filled lesions in the kidneys?

    I think I read about your father somewhere a while back – pretty cool… SteveD

    • Charlene Marshall

      Member
      January 29, 2019 at 2:15 pm

      Great question Steve!

      I just discovered at the doctor’s yesterday that one of my medications is causing trouble with my kidney function. Now I am kind of on the hunt to find out what I can do to preserve it because I need the medication causing the problem. That said, I’m not really researching much yet as I am waiting for the lab to call me back today or tomorrow with more details then I’ll know how to proceed and what I need to do.

      Talk to you soon!
      Charlene.

      • andrew-hall-dc

        Member
        January 30, 2019 at 9:33 am

        Oh yeah, about my father, incredible man.  Sometime I would like to share a conversation I had with him just over a year ago…….

    • steve-dragoo

      Member
      February 13, 2019 at 3:44 am

      @Rebecca-Schrantz-Lilly   Thank you too for sharing Rebecca. Your insights and testimony can help my wife too.  Spring is almost here! – Steve

  • lynn-schmitt

    Member
    January 30, 2019 at 5:10 pm

    To Charlene, Dr. Hall, Terry, John, Steve and anyone I have left out.
    I have an appointment with a Physical Therapist on this coming Monday to try the laser. It is a class 4, K laser. I have chronic hypersensitivity Pneumonitis, but if it stimulates the lungs and helps with oxygenation, count me in. I have am appointment with my transplant surgeon next Thursday, and I will be having the 6 minute walk test and breathing rests. We will see if there is any improvement since the last time 6 months ago. Dr. Hall, do you think I should have more than 1 treatment before I see the doctor?
    Can you have a treatment every other day, or will it be harmful? The PT will know all this, but I want to know now, if possible.
    Thanks, Lynn

    • Charlene Marshall

      Member
      January 30, 2019 at 8:51 pm

      Hi Lynn,

      This is great news, and I know Terry is inquiring about whether or not laser therapy might help with HP as well. Glad you found someone local that can help you with this, and that Dr. Hall provided you with some guidance on how much to do ahead of your appointment with the transplant surgeon next Thursday. Please let us know how both the laser therapy treatment goes (I am assuming it wouldn’t be painful, right?) and then the 6-minute walk test next week. I’ll be thinking of you and hoping everything goes well!

      Take care,
      Charlene.

  • andrew-hall-dc

    Member
    January 30, 2019 at 6:11 pm

    Wonderful Lynn!  You probably won’t see a great deal of change with one laser treatment, and every other day would be very appropriate in the beginning of treatment.  Laser Therapy is cummulative, the more you do the better the results.  Then again, as far as one dose you could over do it, just like a medication, just because a little is good, a whole lot in one dose isn’t good. In other words using a Class IV laser for an hour would be a huge mistake. By the way, I have talked to several laser experts around the country and they all think a better dose would be 10 watts, continuous wave, 5 minutes on the front of the chest and 5 minutes on the back using an intercostal application (between the ribs).  I will be looking forward to seeing how it goes for you!

    Andy

  • lynn-schmitt

    Member
    January 30, 2019 at 6:17 pm

    The receptionist told me it cost $45 for 9 minutes. I will ask if I can have an extra 1 minute and pay $50. Then I will try to go again on Wednesday. Thursday should show if there is any improvement. I am excited to try it!

    Thanks for the information.

    Lynn

  • steve-dragoo

    Member
    January 30, 2019 at 6:17 pm

    @Lynn-Schmitt, et al,

    Lynn that sounds like terrific news. Would you mind sharing how you found the PT to do the class IV?  I am so new at this type of massive potential, I would like to learn a little more.  Appreciate your input. – Steve

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