[john styles]

I am also taking Nexium ( made in France ) twice a day 20mg, tried generic Esopremazole from Costco ( made in Israel ) and it gave me a headache. I googled the article from Baylor university in Texas and it has more information but basically the same thing reported here on this website.  I would not expect to see any study’s on this because its over the counter medication and no money for research returns.  Hoping it works, I have has had usual intestial pneumonia for 5 years.

[john styles]

The article from June 25 published on this web site looked at the role played by esopremazole with lung enzymes.  Its more then treating acid reflex, apparently you can take the acid reflex out of the question of lung disease and look at what esopremazole does for lung health. That is why I read the article again. Hope there is something to this article.

[john styles]

Its all about the diet for me. I had bad coughing after eating. I discontinued the wine ( seems like as we get older its give this up and then give that up)  and stopped snacking after dinner.  My coughing subsided and the o2 saturations raised a couple of points. I think there was a recent article on Pulmonary Fibrosis news about Gerd and acid reflex. I would never guess I may have had some acid reflex. Take a Nexium now in the mornings and my cough is much less.

[john styles]

My guess it is the liver that influences the lungs.  I went for  a lung biopsy and it turned into a thoracotomy ( where they go in a deflate  lung and take samples ) which I would never ever suggest doing but when I read the surgeons report it mentioned connective disease as the cause going to a thoracotomy. When I research connective disease it is the fluid around the lungs and the liver sits next to the lungs and it can cause lung issues. I personally think that the liver is a big culprit for lung issues. We can have normal liver situations and the doctors will tell you the medication is o.k  that they suggest we take for our ailments and a drink will not hurt us but ask a gastrologist and they will tell you that medication, fat, alcohol can effect the liver and cause cirrhosis and you can have normal enzymes.

[john styles]

Mold is very elusive, you need a mold test to be sure there is no mold. I have remodeled homes and found mold hiding under a sofa and  entertainment unit on tile due to pervious owner did not run air all the time in humid beach environment.  I have found it in houses due to roof and siding issues hiding behind electrical plate and drywall and found it on drywall due to sprinklers hitting house.  testing for mold and also radon can be informative.

[john styles]

I have been doing laser for 2 1/2 years.  It defiantly has benefits, reduces the inflammation but may not stop the disease. I can understand the concern for your father. Problem with this disease is you have to be your own detective and try different approaches to see what if anything may work.  I personally think the lung can be influenced by the spleen and liver and that  fat, drugs, alcohol can effect the liver. Good luck and God bless,

[john styles]

Hello Christie, I bought a probiotic at Sam’s and started taking it and I was also taking Milk  Thistle and my fingers itched and almost became transparent, soap would bother the fingers and my dermatologist prescribed steroid cortisone and it would help at night and the raw itchy fingers would return in the morning. I stopped the probiotic and milk thistle and I returned to normal. Itchy skin can be a reaction from the liver and the liver is a filter.  The last 10 years I would have a bottle of wine with my wife at night. Most of the doctors would tell me with normal liver numbers to not worry  about the wine but a couple doctors  said you can not rely on normal liver stats ( Alt, Ast, etc).  When I quit drinking and stopped the high fat consumption my sitting oxygen saturation went from 86, 88 to 93-95.  Still issues with saturation dropping when walking. I think the doctors treat the symptom’s and we are left to hopefully try to determine the cause.  I have not given up, I have been trying to determine what effects my lungs for 4 1/2 years.  The liver is next to the lungs and there is what is called connective disease that will not show up on a cat scan. The medications perscribed for treatment, which I do not take,  can cause liver failure.  God bless all of us on this terrible journey of lung disease.

 

[john styles]

I have had the exact symptom’s. My fingers got so bad they would be transparent like I could see thru them, pealing, itching and I would put the prescription cortisone  cream on them at night then in the morning they symptom’s would return. My symptom’s got so bad that common soap irritated my hands.  My symptom’s were caused by taking a probiotic with milk thistle when I stopped the symptom’s went away. It is a sure sign that you have auto immune. Your own body not happy with what you are putting into it. If it were me and I know you are not me I would look real close to what you are taking. I know you are not over weight but you can have liver disease caused by medication and the medication available to us can cause liver failure. Good luck.

 

[john styles]

I think food, drugs, alcohol, supplement’s 0r anything we take can effect us.  Anything we breath, radon, mold, bleach, chlorine, pollen, etc., can bother our breathing.  The challenge is finding out what has caused our lung disease. The medical community has done all they know how to do but they treat the symptom’s, everything the medical community has suggested is to treat the symptom’s and not the cause. The drugs available slow the scaring, laser and supplement’s reduce inflammation, oxygen treats the symptoms.  The food has not bothered me but I stopped my alcohol consumption and oxygen sats jumped while sitting from 86-88 to 92 to 96, walking I still have deterioration.  I guess the liver being next to the lungs nd the lungs being like a sponge may having something to do with the problems we face. If it is a problem it is called connective disease.

 

 

[john styles]

My favorite time was with my wife splitting a bottle of wine, now I have a glass of water.  I would only say ” not so fast on drinking” I have some liver scaring. weather from fat or Hep C that was cured 5 years ago. When I had my liver biopsy they confirmed scaring and fat. When I had a lung thoracotomy ( lung biopsy where the widen your ribs and take samples from the lung, I had a connective disease with the lining of the lungs on the exterior that the doctors did not know what was causing it, this can not be seen with the cat scan.  3 weeks ago I got sick with what I thought was the flu and my pulmonologist prescribed a week of penicillin and I was not feeling good so I stopped drinking and stopped eating high fat deserts and cut back on tea and coffee. My lung saturation went from 86 to 89 sitting to 93 to 95 sitting and sometimes 96. Still lower when I move around.  I would say not so fast on drinking, I thought I was safe with normal low liver enzymes. Now I am afraid to have a glass of wine,  I think all the doctors can do for us is treat the symptom’s of our lung disease. I would think auto immune.

[john styles]

if you google  “feather pillow can cause chronic ” it comes under Val de Hebrons   from 2013.   I also raised my prednisone from 5 mg to 10 mg, I was put 0n 50mg in Jan 2018 and got down to 5mg.  Funny, I do not now what caused the stabilization while sitting. I had just gotten off a week of penicillin due to I had what may have been the flu, so I stopped the wine and the chocolate and higher fat snacks, raised the prednisone and did a one week course of penicillin and then the stats raised from 86 to sometimes 96 but staying 93 to 94 while sitting.  These doctors are treating the symptom’s, not what causes our disease, they do not now what causes our lung to deteriorate in most cases. It sure is a lot of trial and no result to get where I am.  The laser is easy to find chiropractors who use them. Google chiropractor’s using laser then call them and ask if they are using a class 4, I have never been turned down after I explain my situation. The cost can be $25 to $75. I pay $42.50 here in Florida but when in the mountain’s of North Carolina I pay $25 per session.  God bless us all as we try to work thru this disease. The laser clears the inflammation but did not stop the disease in my situation.

[john styles]

@mooses3

That is the issue with the lung biopsy, sometimes turning into a thoracotomy, I had a biopsy December 2017 that turned into a thoracotomy, I still have the numbness and tingling under my right breast and the surgeon went in thru my back, either it is not as bad or I have become use to the sensation .  My numbness is not as bad as what you describe.  I have muscle spasm’s in my legs, and upper body and if I turn different directions it helps.  Hope it inproves.

[john styles]

cough is a challenge, besides an elevated bed I have found a pillow turned to length of bed under the wedge or at top of bed then head pillow on top of pillow so the pillow elevates your lung or back Then starting 20  minutes prior to bed a Pepsid and then on the night stand prescription cough syrup just in case its needed.

[john styles]

Hi Sam, The person with the knowledge is Dr Andy Hall, he is a chiropractor who has lung disease and has used the laser on himself. The laser is not approved treatment and lung doctors for the most part do not support this treatment. From my own personnel expediences I can say it does work. I can not say it stops lung disease but I have seen results enough to know it helps. My guess is it gets rid of the inflation and that is why people when they start laser can see improvement. My personnel experience was after 29 months with this disease I had deteriorated 26% since diagnosis and then  comparing my pft tests after doing laser for 18 months I had a deterioration of fcv of 4% and improvement of 6% for dlco, I can not take the medication available due to I have liver scaring. Now the article above from Canada is truly amazing,

[john styles]

Here is an interesting article out of Canada, I do not think the laser stops lung disease but clears up the inflammation.  May to help Covid people. https://www.amjcaserep.com/abstract/index/idArt/926779

[john styles]

My experience with my lung biopsy was not good. The surgeon ended up doing a thoracotomy due to I had thick pleuora around the lungs that is usually caused by a secondary infection. A Biopsy that turns into a thoracotomy is painful and you have to have a drainage tube in your back for 5 days. The interesting part is the biopsy confirmed what the high resolution ct scan predicted.  A second pulmonologist who is in charge of a large hospitals transplant unit who reviewed my case said he would not have done the  biopsy because it only confirmed what can be confirmed with a high resolution ct scan.

[john styles]

I met with my pulmonologist yesterday, he usually optimistic but I think he was worn out. He said he is currently treating 40 covid patients, he said he was tired of hearing code blue. Discouraged yes but still working. He said it is not the older people as much as the younger ones. He also said if we wear a mask and stay 6 feet away then we are pretty safe, the problem is when we are around family or friends, mask off and closer.  I feel the restrictions are good, there is always some inconsiderate naive  people who do not understand until they get sick that do not wear the mask. I have noticed more people wearing masks and have noticed we stooped increasing in number of infected people in my area.  Hoping we get a vaccine.

[john styles]

Update on my EGCG, I stopped the EGCG about 10 days ago, noticed my lung saturation’s had deteriorated a little. Real strange as the lung saturation’s  improved a little when I started EGCG. Now the saturation’s have improved again. I may start EGCG again but first I want to get a test to see if my SED rate is normal or inflated, ( SED rate measures inflammation. )

[john styles]

According to a university in Spain they think feather pillows are real bad, if you google “Catalan study feather pillows”  it comes up in google along with advertisements wanting to sell feather pillows.  So I thought I had gotten rid of all my feather pillows, down comforters, clothing,etc and then I discovered a lot of the new furniture is using feathers for stuffing.  Its like a horror movie, you think you disposed of the   feathers and sit on your chair or couch to relax  and then discover you are surrounded bu feathers.

[john styles]

The complete publication from the New England Journal of medicines is fascinating, worth th $20 to download the publication.  Learned it was a real research study, small but done at reputable hospitals. First access the article here referenced in the above post.

[john styles]

@steve-dragoo

I do not know if laser or the ECGC is working to reduce the inflammation

but one of them or both are working.  I had done the EGCG for 3 weeks, 2 weeks at the dose and time recommended in the study posted on this web site ” Green Tea extract seems to stop fibrosis as seen in small study” when I was getting ready to do labs I thought I would check the markers for fibrosis that were checked in the study but the local lab at Quest told me they were speciality tests so I thought I would check the inflammation with the SED test after having a SED test 2 1/2 years ago and the Sed was now normal,  cant really say saturation is any better but with no inflammation I was encouraged. Do not know if it was laser or ECGC.

[john styles]

Can not really say I feel better, seems the saturation rate is bouncing around, I was stuck in the 88 to 89 and now I see it is 89 or 91 or 92 but it can be different on different days.  I paid the $20 to the New England Journal of medicine and downloaded the complete publication of the ECGC research after reading about  it on this web site. They referenced two tests they did for fibrois and when I asked my pulmonologist if they could run the tests the pulmonologists said they were speciality tests and their lab said no. I then reviewed some of my lab work from a research hospital and noticed they ran the SED test so I had my general doctor do the test and was surprised to see it normal. When I see the pulmonologist at the research hospital I will ask him to run the speciality tests. Exciting to me to see no inflammation.

[john styles]

Wow! What a shock. Very happy your recovering. All of us are concerned and scared of this virus and then to here you had the virus. We need you Charlene, you do a good job and the information we get is priceless from this website.

 

[john styles]

When I had Hep C and prior to the treatment now available, the treatment was interferon with Ribavirin which was available in other countries prior to it becoming available in USA. I flew to Mexico city where I  took a cab to the Manufacturer’s lab which had the entrance guarded by guards with machine guns and I was escorted by t the labs into the sales office and purchased the salesman’s samples for $2000 and given a prescription to clear customs. When the custom agent at Miami asked what I had in the bag I told him it was full of prescription drug and I had a prescription and he  waved me thru without looking at the drugs.  The drugs were the real thing and all done with 20 hours. I had to wait untill about 5 years ago when the came out with the current drug that cures Hep c to get cured.