[david-swain]

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 fortunate that my local hospital where I was diagnosed is a Centre of Excellence, and that’s where I’ve been monitored and treated. They have provided ESBRIET medication, liaised with my GP and together arranged every possible help for me including a hospital raisable type bed, district nurse visits and oxygen, both in the home and refillable tanks for when I go out. All provided by the NHS with no charge. I cannot speak too highly of how I’ve been treated.

If there is a Centre of Excellence near you, may I suggest you try and get your Mom transferred there, as they will have the knowledge to give the best and most appropriate treatment – including oxygen.

All the best Vincent. I hope you find the right doctors to look after you Mom.

[david-swain]

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 respiratory consultant, who said he didn’t think it was due to my IPF, but it might be a side effect of my medication ESBRIET. So I stopped the medication for 10 days but the symptoms continued.

I found that if I got hot in bed, then I would overheat and start sweating. I’ve been helped by buying a one and a half tog duvet and sleeping with the upper part of my body exposed, even though it was winter here in England.

My doctor suggested to try taking amitriptyline and I’ve found that this is very helpful, although not a complete cure. At least I’m sleeping better, for which I’m thankful. I’d be interested to here  if this helps others as well.

David Swain

[david-swain]

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.

[david-swain]

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 nurse told me she’d not heard of it, but suggested I reduced the Esbriet to one small tablet 3 times a day to see what happens. ie 1/3 of full dose. It may be due to another drug or something else completely. I’m wondering if anyone has else experienced similar feelings?

 

[david-swain]

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 are too high. So I will seek further advice on overcoming the acid reflux with different PPIs or other medication. If anyone has suggestion, I will be pleased to hear them.

All the best for better breathing

[david-swain]

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 any benefit at all. Thanks. Keep well.

 

[david-swain]

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.

[david-swain]

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 FVC is still above 50%. I hope this helps.

[david-swain]

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 early days on OFEV, so I really need longer to assess the effect.

[david-swain]

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 didn’t use it last time we flew. I’ve deteriorated since then, but still not on oxygen. I’m staring Ofev on Monday.

All the best and good breathing. – David.

[david-swain]

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 medication. Are you on meds as well as all your supplements?

I’m wondering if the WEI herbs might help, but don’t know how to access them here in U.K. As you are also outside US, do you have any suggestions as to how I can get them?

I’m also booked for another 2 month holiday in New Zealand in January. Does anyone know of a laser therapist there? I’ll be based on Hamilton, North Island.

Best wishes – David

[david-swain]

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 below 80%. I’m due to see a different pulmonologist about this on 14 November.

For years, even before I was diagnosed with IPF, I’ve suffered from Burning Mouth Syndrome and change of taste. This is worst at night and I’m wondering if it is connected with IPF. I’d be interested to hear if anyone else has experienced this.

I try to keep as active as possible, as I find this helps. Generally managing to walk 12,000 steps or 4miles a day.

I have recently started taking CBD oil and think this is helping, particularly with O2 levels. For the present, I’m pressing on with Laser in the hope that I will stabilise. We must all “keep on keeping on” to battle this disease.

[david-swain]

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

[david-swain]

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 measure again during tomorrows treatment. I am discussing with my chiropractor increasing the dose by 1500 joules as Dr Hall suggested on another forum. I’ll keep you posted………

 

My sats generally are down to about 80% while exercising, but I am not particularly breathless and I am not on O2.

[david-swain]

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 question. During my last laser treatment, I measured my blood SAT levels with an oximeter. While treating front right lung O2 increased from 95 to 98. On all others areas it fell to 93. We were so amazed that we repeated the front right again, with the same result. Have you met this before and do you think it reflects a variation in the scarring for different parts of my lungs? Should I increase the treatment times in the areas that fell.

Thanks for all your input and help. David

[david-swain]

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

[david-swain]

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 9 treatments and intend to talk to my chiropractor next week about treating the accupuncture points as well. One think I’ve noticed is that after each treatment my SATs and heart rate are all over the place for about 24 hours, after which they settle back to normal.

I’m getting excited because I’ve another foreign trip coming up in 10 days time – a 10 day holiday in Israel. The flight time there is 5 hours which should be interesting. Also, the tour schedule is demanding, so again I wonder how I will cope.

Take care of yourself. All the best….. David

 

 

[david-swain]

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

[david-swain]

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

[david-swain]

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 repair (Carnesine and Cq10), antioxidants etc.

My pulmonologist here in UK is reluctant to do CT scans due to the high radiation dose but he plans another X-ray when I see him in August. I’ve not had an official 6 min walk test, so can one of you tell me how I should be measuring? Is it distance, steps, O2 level during or at end?? I can do 750 steps in 6 mins but my O2 will be down sometimes below 80. Although this doesn’t make me feel particularly breathless and I’m not on oxygen.

Andy. You previously confirmed that my treatment dose was OK. – 10watts average, 20w peak, phase time 45secs, 660, 800, 905, 970nm, 4 mins each lung, each side (16 mins total). Do you suggest any changes in this, please?

Go safely On your flight Steve. All the best David

[david-swain]

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 measurable one is my resting O2, which is the same at 96%.

I’m struggling to find something else I can measure in a meaningful way. This is possibly because, I’m in early stage and have little difficulty with gym workouts or walking for 6 mins, although my O2 often goes down to below 80% while doing these. Maybe walking uphill is a little easier, but again this is very subjective and varies from day to day anyway. I intend to continue with the laser until my next PFT tests in August, when I will have meaningful figures to compare.

David

 

 

 

[david-swain]

@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 Philippines. I’ve done long haul without O2 and was fine. Have you found anyone in the Philippines who can give you laser?

[david-swain]

@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 that has really helped my energy levels is a therapy recomended by a health guru called “mitochondrial Rescue.” She suggested this after a heart rate variability test. This fest measures how the body uses energy. The supplements I’m taking are essentially Carnesine and CQ10. After starting them I found an instant improvement and no longer wanted to rest after lunch. There’s quite a lot of research about mitochondria and IPF. I’m including a link to my gurus web site and a more general research paper.

https://www.mitochondrialrescue.com/

https://www.jci.org/articles/view/87440

 

[david-swain]

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 oxygen levels on the 2 x 12hr flights. My pulmonologist is arranging a “fitness to fly” test. I was OK last time, but if necessary, I’ll just have to pay the airline for in flight O2.

Thanks for all your work and encouragement. I hope you are at least stable. Best wishes – David