I’m sorry to inform you that my husband David Swain died on the 17th May. He had a stroke resulting from the IPF and died the next day. Now rests in peace.

Hello Vincent,

I’m really sorry to here about your Mum and her experience with getting treatment and oxygen. I’m in the UK and have IPF and am on oxygen. As IPF is supposed to be a rare disease, knowledge and treatment has been centred on certain hospitals as “Centres of Excellence” for Interstitial Lung Disease patients (including IPF).  I’m… Read more

Hi All,

I have been interested to hear that others are suffering from temperature problems. For some time now I have been experiencing symptoms of overheating, particularly in bed. This started with a burning sensation on my feet and ankles and then on my upper body as well, although I didn’t have a temperature. I mentioned this to my… Read more

Thanks Regina. It’s interesting to hear you had those side effects, even though they’re not the same as mine. I think I’ll try stopping for a couple of days, as the nurse said that would be only way to tell. In any case, I think I’ll put up with the burning in order to stay on ESBRIET. Happy new year to you and all who read this.

Burning Skin sensation
I started on Esbriet recently and just finished titration up to the full dose. Fortunately, with non of the usual side effects. However, I’ve also recently started feeling a burning/hot skin sensation in my feet and owner legs, also on my upper body to a lesser extent. I wondered if this is a side effect of the Esbriet. My… Read more

My thanks to everyone who has replied and supplied such useful information on your own experiences with acid reflux and fundoplication. In view of the mixed comments I was of two minds whether to go ahead. However my consultant Respiritory dr has now strongly advised against it due to the relatively advanced stage of my IPF. He said the risks… Read more

Thanks for your replies Malcolm and Anne.
I’m sorry to hear your fundoplications did not result in any significant improvement. I had a discussion with the anaesthetist today who told me off the higher than normal risks, due to my PF. I will now have to consider whether to continue. As a matter of interests, do you think having the fundos gave… Read more

Hi Susan. I’ve tried double doses of PPIs including Omeprazole; tried to find dietary triggers; tried not eating in the evening. Nothing seems to work. So that’s why I’m considering surgery.

Acid Reflux operation  and IPF.

I was diagnosed with IPF 3 years ago. For many years I have suffered an acid taste in my mouth, which is worst at night. This has now been finally diagnosed as acid reflux. I believe that this is the cause of my IPF,  due to the effect of the acid vapour on my lungs.

I am considering having a surgical procedure… Read more

Hi Charlene. I’m in UK. I’m went on OFEV last October and was told that both OFEV and Esbriet can only be prescribed if FVC is less than 80%. In addition both drugs will be stopped if there is more than 10% decline in a year, or FVC falls below 50%. If one of them doesn’t work or cannot be tolerated, you can be switched to the other, as long as… Read more

Hi Charlene. It’s lovely to hear from you again. I’m still in England, but booked to go to NZ for 2 months on 10 January. We went last January and had a wonderful time. It’s so nice to leave our winter behind to enjoy beautiful Summer temperatures and to see our son, his wife and two young granddaughters.

I’m a bit apprehensive about… Read more

I’ve been on 150mg twice a day for 6 weeks now. Thankfully, no side effects at all.My latest spirometry test showed only a marginal 1% decline from 75% to74% FVC and 45% to 44% DCLO, from 3 months ago. So I guess that it good news. However, I am feeling more breathless and tired, so that rather goes against the test results. However, it’s… Read more

Hi Charlene. I’m so happy for you that you made it to Hawaii. What beautiful photos! Wow, swimming with dolphins and all the other activity – great. Make the most of it and treasure those memories.

I’m interested to know if you used oxygen during your long flight. I’m flying from UK to New Zealand again next January. I’m not on oxygen, so… Read more

Hi Steve @steve-dragoo

It’s good to hear that you seem to be doing OK on your long stay in the Philippines, even without the laser treatments. Have you had any PFTs while there or is it just a general feeling? Personally, the laser does not seem to be helping as my PFTs are worse and I’m due to see a nurse on Tuesday about starting… Read more

Hi John ( @caneelbay1 )  I’m so pleased you are still doing well and that Laser seems to be working for you. I have been following Andy Halls’s protocol since April but my test in July showed a reduction in FVC from 83% to 77%. This reduction has meant that I will be eligible for Ofev or Esbriet, as here in UK we are only considered if FVC is… Read more

Hi Steve. @steve-dragoo

It’s good to hear from you again and that things are working out good for you in the Philippines although it’s a pity you cannot find a laser provider.

In answer to your question, all I do is read the oximeter on my finger while undergoing the laser treatment on each lung.

David

Hi Dr Andy and John,

Thanks for your helpful comments. I have had a look at the symptoms of pulmonary hypertension and don’t think I have that.

I measured again at my last laser treatment and this time O2 saturation increased on both front lungs, wheras previously it had increased only on right front. So I think that is good and will… Read more

Dr Andrew Hall. @drandyhall I have been doing K-Laser since end of March. If I’m honest with myself I don’t think there has been any improvement, as my symptoms are getting worse. My O2 levels are down and I’m slightly more breathless. Do you think this may be due to laser and that I should stop laser treatment?

I also have an intriguing… Read more

My heartfelt sympathy for you Charlene and all Kim’s family and friends. David

Hi Charlene. It’s lovely to hear from you again and I do hope you are doing well.

I’m pleased to say that my voice returns to normal after saturation picks up. If it’s later in the day picking up will take longer, even though my O2 reading is, say 95%. I’m still continuing the laser therapy even though I haven’t see much change so far. I’ve had… Read more

Hi Charlene. Thanks for raising this issue, as I have been wondering about my own ADL. For me, this is my voice. After exertion, I don’t feel particularly tired, although my SAT will drop into the low 80s. However, I find my voice is affected and I experience difficulty in holding a conversation. I wonder if anyone else has experienced this. David

Hi Rob and Bob,

I can confirm the advice of Steve Dragoo. have been taking serrapeptase for many years before being diagnosed with IPF a year ago. Since being diagnosed I have increased my dose to 300SUs a day. Although I cough a little, I have very little phlegm and believe this is due to the serrapeptase. I hope this helps. David

Hi Charlene, Andy and Steve. @charlene

Thanks for your encouraging messages. I forgot to say that initially I had some decrease in my cough, but that seems to have returned, although there is little phlegm and it isn’t too bad.

I too, do a load of other stuff. Notably exercise (4miles a day, 10,000 steps, gym), serrapeptase and mitochondrial… Read more

Hello everyone. I’ve been really interested in reading the posts from all who have experienced an improvement due to Laser Therapy.

I started K Laser on 23 March and have had 10 treatments so far. I had high hopes of a similar improvement. Sadly, however, if I’m honest with myself, I haven’t noticed any significant change. The only… Read more

@let666, @steve-dragoo

Hi Leontis and Steve. I’ve been following your discussions on Natto and thought I would let you know that I’ve taken 1600fu per day for many years, with no ill effects. This, in combination with Serrapeptase has “”cured” my angina. BP and heart rate are both low.

Steve. I wish you all the best as you travel to the… Read more

@steve-Dragoo, @lorraine

Hi Steve and Lorraine,

Thanks for your helpful posts. Yes, I meant to say that I am on 320,000SU serrapeptase. I have never found any problems with Nattokinase and bleeding. I’ll check out the B complex and Methyl Protect although my homosistein and heart are both normal.

The one think I may not have mentioned before… Read more

Hi Kiran ( @kiran ) ,  Of course I don’t mind you asking. I’m happy to help in any way possible. My pulmonologist seems happy with any alternative therapies. His attitude is that if it’s helpful then go for it.

At present I am not on either OLEF or Esbriet. My laser therapy is on the schedule which K laser sent to my chiropractor. I’m paying… Read more

Hi Steve, @steve-Dragoo.

It’s good to hear from you again. I’m trying to take 360SU of serrapeptase per day, but this is difficult to remember to take it between meals. So, I guess I mostly take 240. I omitted to say that I’ve been taking Nattokinase as long as the Serra, as this was the combination, which I believe cured my angina. My… Read more

Hi Kiran. I forgot to say that I’ve taken Serrapeptase for 15+ years to help with angina. I no longer suffer from angina and taking the serrapeptase may have slowed the progression of IPF, which due to a persistent cough, I suspect I’ve had for a long time, before it was diagnosed in March 2018. As I said before my cough has now reduced due to… Read more

Hi Kiran. I live in Exeter and have started laser with Dr Julien Barker, South Street Chiropractors, South Molton, Devon.

I’ve had 8 treatments so far.

Hi Loraine. Thanks for posting the links for the Egyptian Study. I am now reading the 3rd one worked well. For the information of others, this is the link for the Egyptian Study, showing the lung acupressure points.

http://www.ejbronchology.eg.net/article.asp?issn=1687-8426;year=2018;volume=12;issue=3;spage=317;epage=322;aulast=Sayed

Thanks John. The only study I can find is for 30 participants with COPD (not IPF) and uses 5-30W lasers. So, not only is this a different disease, but the treatment is completely different to the class IV 10watt laser treatment being discussed in this column. Maybe I haven’t found the Study you refer to which you said included 200 participants.… Read more

Hi everyone. Thanks to everyone who has contributed, especially Dr Hall. I’ve been following the discussion and have now had 7 k laser treatments. I’ll post the results after 10 treatments. Meanwhile, can someone please post a link to the Egyptian Study as I would like to read it. I’m wondering whether to include the acupuncture points in my… Read more

Hi Charlene,

It’s always nice to hear from you and particularly that you are doing OK. You seem to have a really busy life considering that you are working. Long may it continue!

No, the flight wasn’t delayed. Everything uneventful and on time in the respect. The complimentary night in a 5* hotel in Seoul was just part of the back to back… Read more

Hi Charlene,

Yes, we had a lovely time with our New Zealand Family. It was so nice to stay for two full months to really get to know our two lovely granddaughters. We are hoping to go again in a years time, God Willing. I’m happy to say that the long flights back were uneventful and I didn’t feel any ill effects, even though my O2 levels were… Read more

Hello @drandyhall.

As you know this discussion about Laser Therapy started while I was on holiday in New Zealand and with your help I was able to find a chiropractic doctor near my home in England and have started treatments since returning. So far I have had 4 treatments using a protocol provided by K Laser. The frequencies are… Read more

Hi Charlene. Thanks for your reply about my profile picture. Unfortunately I still haven’t been successful. Following all your steps until the final save; there is no save button to finalise the change.

I’m so happy to hear you’ve made your booking to Hawaii. Now you are committed, you can start the exciting part of planning in detail. I’d… Read more

@steve-dragoo,

Hi Steve. 850km os a long way to go for Laser! Actually there are very few K Laser practitioners in U.K., but with Dr Andrew Hall’s help I was able to locate one of the few, who actually practices 50km from my home. What a blessing! Perhaps we need to consult @drandrewhall to see if he has any view on how detrimental it is to… Read more

Good morning @charlenemarshall. I joined PF. News and set up my profile a few months ago. However, I can’t work out how to insert my profile photo. After selecting my photo, editing size etc. I’ve hit a block. Can’t see any means to next step. Can you help, please? David

Hi @steve-dragoo,  Lovely to hear from you. From your previous posts , I think we are in a similar place re our condition. I also take serrapeptase and am about to start Laser on 29 March when I get back to U.K. I hope the Laser is still proving helpful for you, but am wondering what you will do while you are away from your practitioner.  I am… Read more

Hi @steve-dragoo. Just to share my experience with long haul. I live in Uk and am holiday in New Zealand – 2 11hr flights. I am not on oxygen. My resting O2 is 95. Before flying I had fit to fly’ test. I did not experience any discomfort while in flight, but think I may have taken longer to recover from jet lag. The link below may be useful as… Read more

 

Hi Eleanor,

Following a Fit to fly’ test I flew from Uk to New Zealand in January. I still have to make the flights backs. Fortunately I did not need supplementary oxygen. While researching flying with IPF I found this website useful. It lists all IATA approved airlines and their rules for supplementary… Read more

Hello @charlenemarshall and everyone who has contributed to the Flying with IPF discussion.

I would like to share my recent experience of long haul flights. I live in UK and have recently flown from U.K. to New Zealand involving two 11 hour flights with a 2 hour changeover. Although my IPF is mild and I am not on O2 I was concerned about the… Read more

Hi @charlene-marshall,

It’s lovely to hear from you again. Today, we had our first rain in a month since we came to NZ, which was very welcome to the locals. Otherwise sunshine and stunningly blue skies.

Regarding the Chinese herbs, I haven’t noticed any significant improvement. It’s difficult to tell when I’m trying so many supplements etc.… Read more

Hi @drandyhall,

Thanks for getting back to me. I’ve checked out the website of the South Molton chiropractor who has just purchased a class IV laser. He is about 50km from me and the only one in the SouthWest of England.

I will email him in the next day or so, as at present I’m on holiday for the next month in New Zealand. Should I ask him… Read more

Hi @PeterGoodwin

Thanks for your response. I’ve checked out the website of the South Molton Chiropractor and will contact him tomorrow. I’m in New Zealand for the next month, so hope to set up my first consultation when I get back.

Many thanks and take care

David Swain

Hello @jeanmichelf, Thanks for your welcome. Neighbours, but in different countries. Yes. try and make it to NZ, it’s eorth the effort if you are up to it. Our don moved here last March, so we are hoping to visit every 12 months, health permitting.

All the best  😊

 

Hi @charlene-marshall, Lovely to hear back from you so quickly. New Zealand is indeed a beautiful country. The only downside for us in Uk is that it is so far away – two eleven and a half hour flights. I wondered how I would cope with the reduced oxygen levels during the flight, as I am not on O2. My hospital did a test and said I would be… Read more