Posted , 5 users are following.
I meet someone who was diagnosed with Sarcoidosis when she was in her early fifties and her doctor performed a Lung Lavage( washing of the lungs with a saline solution) and placed her on steroids for a year and it has been over 20 years since her encounter and the disease basically never showed it`s awful face again.
1 like, 9 replies
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edwina_60905 kenny24313
Posted
tangles kenny24313
Posted
Very interesting. Could the solution be that easy?
I hope so it would save suffers the pain of current treatments.
Have you go more details you could share with us all?
My surname is Kenny...is that your first name or last name?
Regards
Tangles
Phil Kenny
kenny24313 tangles
Posted
Kenny is my first name. I live in Toronto ON. Canada.
Diagnosis: pulmonary Sarciodosis (2011)
Well, I am a bit disappointed. Could not locate this Doctor that performed the "washing of the lungs" whole lung lavage on this lady I met. He could be retired.. it's been over 20yrs since..
Been suffering from "acute oxygen starvation" breathlessness. If I walk 30 feet, climb a few stairs or walk up any incline, continuous coughing and serious shortness of breath overcomes me.
On Prednisone over 2yrs. not working for me. besides giving me a "big belly" I was 175lbs now close to 200lbs.
Asked my respirologist for a 2nd opinion, he sent me to a pulmonologist, did walk test, and breathing test and “what ever” test . told me I would need a lung transplant. decided not to see him again. Jan 2016 was suppose to be my return visit.
This pulmonologist confirmed my diagnosis as Sarc. and told me that "whole lung lavage" was not the treatment for SARC. wanted me to try "Methotrexate" or something to that effect.
I am lost for word to describe the feeling of helplessness this disease has impose on me. willing to try "anything" now.
I do get some relief when I drink, so I have been drinking heavy now. “You can see me with a bottle of single malt as a insignia of my plight” I am now hearing of this drug LDN (low dose naltraxone) that some people claim to have worked for their pulmonary SARC... problem is that doctors would not prescribe it for treating SARC. In North America it was approved for the treatment of alcoholism.. so now that I am an alcoholic, I will ask for a prescription to treat my alcohol dependency and hopefully this LDN will help my SARC. Sounds like a paradox “ cure for my alcoholism might be a cure for my SARC.”
Newton kenny24313
Posted
Bronchoalveolar lavage (see wiki article) was used in the past mainly as a diagnostic tool in autoimmune lung disease. The epithelial cells washed out could be examined under the microscope.
Technology has moved on and EBUS endobronchial ultrasound now allows biopsy of the swollen hilar lymph nodes.
There are rare conditions where BL is used with some success, but i suspect in your friends case it was the steroids what done it!
Newton
kenny24313 Newton
Posted
I was reffering to "whole lung lavage" see some links below. Some patients are misdiagnosed with SARC or Cancer etc..So doctors are not god they only can go by what they have been trained to do. We have to be diligent in "our" quest to eliminate this dreadful disease from our system. PAP "pulmonary alveolar proteinosis" bears similar symptoms to "plumonary SARC" and should not be taken for granted.
Went for a second opinion with a pulmonologist who confirmed that I have SARC... but i still believe I have something else. My only issue is complete "breathlessness" acute oxygen starvation when attempting to perform the most mundane task like walk a short distance or climbing a few stairs or any incline.
see links below..
http://www.dailymail.co.uk/news/article-2540645/Man-lungs-washed-30-liters-fluid-years-not-able-breathe.html
http://health.clevelandclinic.org/2014/08/how-lung-washing-helps-patients-breathe-again-video/
http://abcnews.go.com/Health/virginia-man-struggling-breathe-lungs-washed/story?id=21545433
http://www.thestar.com/life/health_wellness/2014/11/14/hamilton_father_misdiagnosed_with_lung_cancer_demands_answers.html ;
Kenny
Newton kenny24313
Posted
I read those links, but I have to say that I think the Daily Mail is the very last place in the world that you should go to for accurate medical information. It is a sensationalist rag.
After 18 months of steroids I can walk up a hill again and I wish you the same level of recovery
Newton
kenny24313 Newton
Posted
Were you on Prednisone for a year and a half? I am assuming you had pulmonary sarc? Pred, works for some and does much more damage to others. Sarc/Pred. caused me to be boarderline diabetic, I am not blaming the steroids since I have very limited mobilty pulmunary sarc and I have gained over 25lbs becaused on this. I was 80% better than I am not before my introduction to Steroids. Well You never know the outcome but time will dictate..
Thanks for the encouragement.
Regards,
Kenny.
pearlie59190 kenny24313
Posted
Iv'e never heard of Lung Lavage, but if it really works, i think that all of us need to ask our Dr about that procedure. Do you know if it's an invasive procedure or a simple one? And does it require hospitalization or outpatient? The best to your healed friend. I know she must be very happy to be free of the burden of sarcoidosis.
Sarcnomore
kenny24313 pearlie59190
Posted
Firstly see links posted above for the lung lavage procedure.. It would appear that in our current medical arena "lung lavage" is not being used to treat Pulmonary Sarcoidosis anymore..
Kenny