Tagged: laser therapy
- This topic has 50 replies, 34 voices, and was last updated 2 months, 2 weeks ago by
Gordon B Sandmire.
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AuthorPosts
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October 18, 2022 at 4:04 am #33296
wesley
ParticipantDear all,
I have been thinking about setting up a Zoom call every two weeks (and review the regularity). On which PF sufferers and caregivers can exchange ideas and energy with regard to how people are coping with PF and how they are treating themselves.
When I was diagnosed my doctor simply stated what PF was, that I was suffering from it and pretty much said ‘get on with it’.
Through research and speaking with lots of people, I have devised my own treatment plan, which is evolving all the time. Most of what I do is a form of self care (i.e eating well, trying to exercise regularly, taking various supplements), although I am also exploring self healing techniques, i.e frequency healing, DMSO, meditation etc, which so far have been very good for my breathing and anxiety levels.
I very much came from a conventional family, who relied on conventional medicine (i.e tablets) for healing. The journey that I am has been gradual and coincidental, BUT I feel massively empowered simply by following a ‘programme’.
I thought that in a community forum, we could share what is/ isn’t working for us and hopefully provide others with some ideas.
Let me know if you would be interested.
best regards,
Wes
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October 18, 2022 at 8:34 am #33297
Renee
ParticipantYes, l would be interested in joining you
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October 18, 2022 at 9:22 am #33298
Vicky Forget
ParticipantHi Wesley
You can count me in for the zoom meetings. I am not too good at it but will give it a try.
Thanks
Vicky
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October 19, 2022 at 9:40 pm #33314
Mark
ParticipantI have reached the end of year 3 after being diagnosed. My last lung function test had me at 74% but I feel I am getting worse. I do not take meds as they are too expensive and with unacceptable side effects. I am not on oxygen but have a portable concentrator.
I would like to hear from others.Mark Anderson
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This reply was modified 3 months, 2 weeks ago by
Charlene Marshall.
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This reply was modified 3 months ago by
Christie Patient. Reason: private contact info removed
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November 1, 2022 at 11:36 pm #33448
Christie Patient
KeymasterHi @bradley88 I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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November 2, 2022 at 3:34 pm #33466
DJ
ParticipantHave you tried laser therapy? A few people have mentioned it on here, but I haven’t heard more about it. Even a doctor on the east coast, can’t remember where, tried it on a covid patient who had lung damage, and it helped a lot. Other stories like this are out there.
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This reply was modified 3 months, 2 weeks ago by
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October 19, 2022 at 9:41 pm #33305
Linda Del Degan
ParticipantYes, I would be interested in joining you.
I have just found out about a Vancouver Island support group that meets every 1st Monday of the month.
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This reply was modified 3 months, 2 weeks ago by
Charlene Marshall.
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This reply was modified 3 months ago by
Christie Patient. Reason: private contact info removed
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This reply was modified 3 months ago by
Christie Patient.
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November 1, 2022 at 11:37 pm #33451
Christie Patient
KeymasterHi @sweetred22 I removed the private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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This reply was modified 3 months, 2 weeks ago by
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October 21, 2022 at 10:15 am #33352
Ehud Kaplan
ParticipantCount me in– it is a very good idea! (And thanks for doing it).
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November 1, 2022 at 11:28 pm #33437
John K. Grubb
ParticipantI would love to join in a Zoom conference.
I live in Houston and even though we have the largest medical center in the world here and both University of Texas Medical School and Baylor College of Medicine are rated as Centers of Excellence, I would rate the care for IPF much the same way you have — fatalistic. Pretty much “okay you have IPF, the normal life expectance is 3-5 years so make your final plans.
Through some of the websites I have discovered that many people with IPF live for 8, 10, 12 years. Since I am 78 if I live another 10 years I will have lived a normal life expectancy.
I am a lot like you — I am a take a bull by the horns guy. I have made the decision to shape my own course of treatment. Am I am interested in hearing from other with the same disease.
Why don’t you pick a date and time and just schedule a meeting.
Thank you,
John
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This reply was modified 3 months ago by
Christie Patient.
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This reply was modified 3 months ago by
Christie Patient. Reason: private contact info removed
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November 1, 2022 at 11:35 pm #33446
Christie Patient
KeymasterHi @jgrubbgrubblegal-com I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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This reply was modified 3 months ago by
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November 3, 2022 at 3:32 pm #33491
Donna
ParticipantI would be interested as well.
Donna
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November 16, 2022 at 1:28 pm #33575
Gordon B Sandmire
ParticipantHi Wes, Gordon Sandmire here. I attended your first zoom meeting so thought I would be included in your future mtgs but evidently is not the case. I didn’t even get a notice about time or date. What do I have to do to be included? I found your first session very informative so would like to be included.
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October 18, 2022 at 9:26 am #33299
wesley
ParticipantGreat, I am based in France, so my time zone is GMT+1, so please let me know what times work for you Vicky and Renee and we can arrange. BR, Wes
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October 18, 2022 at 12:32 pm #33301
Rob1ert Henderson
ParticipantI would be very interested, am finding it difficult to get information from my pulmonologist.
Bob Henderson
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October 19, 2022 at 11:31 pm #33327
Karl
ParticipantHi Robert. Your situation may be like mine, which I’ll talk about later. My 2 cents: (1) You deserve a top IPF MD. Fire your Pomologist. Seek an MD whose primary practice is treating IPF as criteria #1. (2) Confirm the diagnosis you were given that says you have IPF. Get a sound assessment, particularly if you are not having breathing difficulty or are not coughing a lot. To me, a couple of breathing tests with similar results, accompanied by an explanation of the results is critical before a treatment recommendation. (3) Both OFEV and ESPRIET are tough meds for many, severe side affects are not uncommon. Don’t be too hasty in taking either med if you do not have breathing test results and explanation that warrants taking them.
I was diagnosed with IPF in 2018. Web searching said I had maybe 3 years to live, which got my attention needless to say. I found a super MD who treats many IPF patients. She conducted breathing tests and an MRI. The MRI confirmed lung scarring. Interestingly I had an MRI 10 years earlier for a different problem that happened to show the lower lobes of my lungs, that also showed scarring. Imagine, 10 years! I joined this forum where I read about one individual who had IPF for 17 years already. I became encouraged and I adopted an attitude of “no way is this going to take me down!” After several months and many conversations I started OFEV with the same side affect as you experienced. My MD cut me back to half dose. No improvement, so I got stopped completely.
Today, October 2022, I do not get out of breath frequently (or any more than other fairly inactive 85 year old), I cough a little each day but not severely, so I consider myself mildly affected with IPF, and go on with my life. I consider myself extremely fortunate and am frankly embarrassed to comment on this excellent forum where so many severely affected and brave people are. My heart goes out to all patients and their care givers. And I hope you find yourself in a situation like mine.
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November 1, 2022 at 3:36 pm #33438
Millie
ParticipantHi Karl:
I was interested that you said on your post that the lung scarring was there 10 years ago. I recently looked over some old medical results from 12 years ago and noted that the lung fibrosis was there then. However, it was not brought to my attention. Also, 3 years ago it showed up on a chest x-ray I had for something else. Again, I was not told about it. It blows my mind that these doctors don’t tell you all of the findings on tests which are sometimes done for other reasons. They tend to wait until it develops into something and then proceed to treat you for it. Had I been made aware of this years earlier, there are many natural things I would have done to see if they could work in some way. Now, I’m pretty far along and time is of the essence. I’m on ofev since April, having been formally diagnosed in December 2021. Yes, having side effects of nausea, diarrhea and stomach pain but hanging in there. I am 82 and have no other medical problems. Have to use oxygen when exercising, walking and sleeping. No shortness of breath or cough. Lots of energy. It makes me very angry that I was not made aware of this years earlier. Has this happened to anyone else? -
November 2, 2022 at 3:38 pm #33467
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October 20, 2022 at 9:00 am #33330
Vicky Forget
ParticipantI live in Ontario Canada
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October 20, 2022 at 9:05 am #33331
Vicky Forget
ParticipantYou lift my spirits I am staying positive and was diagnosed in 2015.
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October 18, 2022 at 12:57 pm #33302
wesley
ParticipantHi Robert, great! What time zone are you?
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October 18, 2022 at 2:08 pm #33303
Arthur
ParticipantI I would love to be on the call.
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October 18, 2022 at 3:37 pm #33306
Janet
ParticipantI would be interested in joining the discussion. Thanks.
Jan
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October 18, 2022 at 3:43 pm #33307
Linda Maguire
ParticipantWesley,
Is there an IPF support group where you live? I live in Virginia & there are a number of support groups for IPF patients & caregivers that meet monthly & share information, have speakers, and provide support for each other as we deal with this disease. Meetings have been via zoom since the pandemic, but we previously met in person. I find the meetings helpful & informative. I googled IPF to find the local support group when I was diagnosed but my pulmonologist didn’t know anything about the group! Linda
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October 18, 2022 at 11:40 pm #33318
Steve Dragoo
Participant-
October 19, 2022 at 10:56 am #33321
Linda Maguire
ParticipantSteve,
I live in Virginia Beach but the support group covers Norfolk, Virginia Beach, Chesapeake & Suffolk. There is another support group nearby for the folks in Williamsburg, Hampton & Newport News. VCU in Richmond has recently been named as a Care Center, so we now have a Center a couple hours away instead of going 4 hours to UVA or D.C. for those who need/want to be seen at one of the Centers. So far, I am one of the lucky ones & have had no progression of my disease since diagnosis 7 years ago. Linda
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October 18, 2022 at 6:06 pm #33311
Ned
ParticipantOK for Ned (Arizona)
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October 18, 2022 at 6:21 pm #33312
John K
ParticipantSounds good
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October 18, 2022 at 6:56 pm #33313
Linda Del Degan
ParticipantYes I would be interested
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October 18, 2022 at 11:38 pm #33317
Steve Dragoo
ParticipantHi Wesley,
We are similar with our self-care. I’m interested but I am in the Philippines (currently 12 ahead of EDT). Been on PF News over 4 years and previously talked about many subjects. Maybe later on you might want a speaker for example like Dr. Andy – an expert w class-4 laser, has IPF…
Stay well…
Steve -
October 19, 2022 at 11:21 am #33322
Dave Minsberg
ParticipantI would be happy to join you. I’m in Las Vegas
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October 19, 2022 at 9:40 pm #33310
Amy
ParticipantI’m interested
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October 20, 2022 at 8:29 am #33329
Peg
ParticipantI would be interested too.
Peg -
October 20, 2022 at 9:51 am #33328
Nancy
ParticipantI’m interested in joining you all in a support group. Thanks.
Nancy -
October 20, 2022 at 2:56 pm #33336
William E. Shotts
ParticipantI’m interested. Forward details and time.
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October 21, 2022 at 3:03 am #33349
Marshall
ParticipantYes please. Great idea!
I’m 2 years in after an accidental and fortunate early diagnosis.
I was unable to tollerate Esbriet, after 5 months struggle, and changed to Ofev which is infinitely better for me personally and, depending on my diet, I usually escape any side effects other than a generalised fatigue.
Looking forward to make contact on Zoom but am CET time (Switzerland). Maybe we need groups organised around time zones.
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This reply was modified 3 months, 2 weeks ago by
Marshall.
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This reply was modified 3 months, 2 weeks ago by
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October 22, 2022 at 3:13 pm #33369
Dennis Skahen
ParticipantI would also like to become part of your ZOOM. I live in Wisconsin and was diagnosed with IPF in Sept 2021.
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October 23, 2022 at 1:26 pm #33367
Don
ParticipantYes, I’m interested.
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October 25, 2022 at 4:34 pm #33379
Susan W Lyon
ParticipantI’m interested too. I’m in Berkeley CA
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November 1, 2022 at 8:22 am #33424
wesley
ParticipantDear all,
I apologize profusely for the outage in contact, but I have been travelling for work.
I suggest we have an initial call on Thursday this week at 6pm Greenwhich mean time. Its very difficult to assess the best time as there are so many locations, so I pinned the tail on the donkey.
If you email me your email address I will add you to the Zoom invite for Thursday.
Best regards,
Wes
p.s we can change times or break off into groups if the time differences become an issue.
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This reply was modified 3 months ago by
Kevin Schaefer.
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This reply was modified 3 months ago by
Christie Patient. Reason: private contact info removed
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November 1, 2022 at 2:53 pm #33434
Mary Black
Participant-
<li style=”text-align: left;”>I would welcome Zoom Meetings
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November 1, 2022 at 11:42 pm #33453
Christie Patient
KeymasterHi @wranger I removed your private contact details from your post. I’ve advised others in the thread to send you a private message through the forums so that your personal contact info isn’t out there for the public to see. You should get email notifications of those messages, but if not, you can access them from your profile.
We try to stay on top of things here but every once in a while a scammer slips through the cracks and wreaks havoc. Just trying to keep you safe as you forge ahead with this wonderful online support group. Thank you for “taking the bull by the horns”
Christie
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This reply was modified 3 months ago by
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November 1, 2022 at 11:28 pm #33433
Pauline Korol
ParticipantI would be interested. I’m on Central time. We need all the help we can get. I belong to a great support group in Winnipeg. We are now starting in person meetings again after COVID.
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November 1, 2022 at 11:32 pm #33444
Christie Patient
KeymasterHey everyone, a note from your moderator here. Please be cautious about sharing personal contact information on the web. Our site is a safe place, but it is open to the public and therefore so are any email addresses that you post here on the forum. You are welcome to coordinate a group with each other, but it would be safer if you sent your personal email addresses to @wranger Wesley in a private message so that he can coordinate with you. Click his name to go to his profile and send a message from there. Any posts with email addresses visible will be subject to moderation and removal. Thanks!
Christie -
November 2, 2022 at 7:02 am #33456
wesley
ParticipantDear all,
It seems I cannot share my email address (which I respect), but was happy to do.
Either way, the first Zoom call is now scheduled for tomorrow at GMT6pm, here is the Zoom link
https://us02web.zoom.us/j/88967710075?pwd=UXVNMjJyTEdFYVJiajRGYmRRUjVuZz09
I hope that works.
Or alternatively private message me here and I will be happy to provide my contact details.
Thank you for moderating Christie, no offence intended.
Best regards,
Wes
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November 16, 2022 at 8:35 am #33565
Denise Stogdill
ParticipantI’d love to be on the next call.
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November 2, 2022 at 3:40 pm #33468
DJ
ParticipantHas anyone tried Astragalus and had positive results?
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November 14, 2022 at 12:59 pm #33541
MaryLou Ward
ParticipantYes add me to your zoom meeting/discussion. My breathing is such that it takes me a while to say something…. Diagnosed 11 years ago now on 6 lpm 02.
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November 15, 2022 at 2:49 pm #33551
Sue Miles
ParticipantI would be interested in joining the group going forward. Thank you.
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November 15, 2022 at 3:28 pm #33556
Nancy
ParticipantHi Wes, I would still like to participate. I am in Pennsylvania, EST.
Thanks!!
Nancy -
November 15, 2022 at 5:08 pm #33558
Phil Ryan
Participantthis thread was posted on 11/14. Wesley’s post says the Zoom meeting “will be tomorrow at GMT 5:00 PM,” but does not give a date. Can you please clarify the date of the meeting?
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November 15, 2022 at 9:21 pm #33564
Linda Del Degan
ParticipantI saw that you had a session. How do I get a reminder?
Linda
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November 22, 2022 at 9:39 am #33633
wesley
ParticipantJoin us this Thursday at GMT6pm for our second PF ‘taking the bull by the horns’ Zoom call, with our guest Charlie Speller.
Charlie Speller is a highly experienced & multi-disciplined body work practitioner, bringing together a wealth of experience in healing connective scar tissue and a wide variety of other practices.
Have you wondered why scar tissue is created? Have you questioned if we are helping the progression of scar tissue?
Fascia and Fibrin are the two main contributors to the production of scar tissue, which means the more we have of these two things in our bodies, the quicker scar tissue will form within us.Surely this means that if action is taken to reduce these two things, scar tissue is reduced?
Seeking answers to these questions and others will be the topic of discussion this Thursday evening at GMT (Greenwich mean time) 6pm on our second PF Zoom.
Join Zoom Meeting
https://us02web.zoom.us/j/87120657580…
Meeting ID: 871 2065 7580
Passcode: 912034All are welcome, for those of you that want to retain or obtain a sense of control, please attend. Treatment of PF doesn’t have to only be taking a tablet, there are a multitude of things we can be doing to improve quality of life, not just physically, but mentally too.
This session is completely free of charge and Charlie receives no payment for her time.
P.s if anyone wants to PM me, I will give them my personal mobile number if they struggle to get into the Zoom call, I am on WhatsApp, so can be called/ messaged.
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