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August 19, 2010 at 2:11 am #304574ParisaParticipant
My husband had a Pulmonary Function Test today and his lung volume has increased 10% (back to 89%) and his oxygen diffiusing capacity has increased 16% since his last PFT about 18 months ago. His lungs are almost completely normal and his condition is now mild compared to the severe of years past. The technician told my husband that all of the other patients she sees just get worse and here he is getting better scores each year.
Don't let anyone tell you that lung conditions can't be reversed!
August 19, 2010 at 2:38 am #350404nspikerParticipantParisa, it doesn't get any better than that :dude: !!!
August 19, 2010 at 2:43 am #350405redrockParticipantThat is great news!!! And it gives me added hope that my lungs can improve too!!
August 19, 2010 at 3:02 am #350406jasonjuulParticipantHi Parisa,
I was very heartened to read the news of your husband's improving pulmonary test results. I've been living through two years of declining diffusion capacity being suffered by my 15-year old daughter who has MCTD.
To what do you attribute your husband's spectacular recovery?
I sincerely hope and pray that he continues to do well.
Best Wishes,
John M.August 19, 2010 at 3:17 am #350407ParisaParticipantHere's a link to a post I made about a year ago which basically summarizes the treatments that I felt have been most helpful:
http://www.rbfbb.org/view_topic.php?id=2868&forum_id=1&highlight=the+lungs+and+parisa
August 19, 2010 at 3:29 am #350408lynnie_sydneyParticipantWonderful news Parisa! Not only the physical benefits, of course, it is also energising when we get results that confirm our choices after all the hurdles and opposition. Way to go! Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)August 19, 2010 at 3:42 am #350409Steve201Participantparisa
that's great news and yes…it can come back…I was down 28% but have improved to 20%…8% is 8% and I'll take it anyway I can….
keep up the good work ….
Steve
August 19, 2010 at 3:48 am #350410ParisaParticipantNancy,
You're right. It doesn't get any better than this. My husband went for a run on Sunday and he said it was his best run since he got sick.
Redrock,
Treat the disease and the lungs will improve.
John,
I realize it is a lot harder to treat children since you are making a decision for someone else and you have to deal with pediatricians. If you haven't been in contact with CherylF, her daughter has also reversed her lung condition and she did it as a teenager.
Look into NAC and antibiotics (doxy, Zithromax, etc). I have some research supporting this in the link I posted above.
August 19, 2010 at 5:46 am #350411nspikerParticipantParisa,
Doesn't UCSD have one of the premier Pulmonary Hypertension doctors in the country? My uncle had this disease, and I wish we knew then what you have learned. Doesn't it make you want to sit on a board, or talk to the specialists about what you have uncovered? Traditional medicine could generate increased funding if they could get results with 16% improvement, or even better, reversal of a life-ending disease.
You really have a story to tell….
nancyAugust 19, 2010 at 7:31 am #350412sadieParticipantHi Parisa,
That's great news!!!! I can only imagine the PFT tech's face when he realized which way the numbers changed. I'm so happy for you and family. It really seems as if you took this disease, stared it in the face and told it that you would win, AND DID! I'm certain your husband is absolutely thrilled. Wow! You've proved there truly is hope for lung improvement.
I'm thrilled for you and your husband! Thanks for the hope your success gives. Hope doesn't come around very often in the lung department. Thanks again!
Sadie
August 19, 2010 at 12:33 pm #350413KimParticipantTruly amazing and such wonderful news, Parisa. 😀
Take care…..kim
August 19, 2010 at 1:19 pm #350414redrockParticipantI am tempted to add NAC to my repertoire, except that I read a couple times that while it may be good for pulmonary fibrosis, it may worsen pulmonary hypertension. So I'm on the fence about this one.
August 19, 2010 at 3:44 pm #350415ParisaParticipantHi everyone,
We've had over three years of stopping the progression and then little by little recovering the lung function. The pulmonologist is amazed but I doubt he'll start pursuing treating his other patients this way (actually he didn't treat – just “allowed” us to do the treatment).
August 19, 2010 at 7:41 pm #350416Rosey UKParticipantThat's great news Parisa!:roll-laugh:
two weeks ago I woke at 5am shivering, cold and in pain and stiffness. I thought it was a massive flare with fevors as I used to have them all the time.
Joe made me a cup of tea and paracetamol, but I felt awful, I started to be sick. Well to cut a long story short a doctor finally came and sent for an amulance. I was in a deep sleep the paramedics worked on me in the amulance before getting me to hospital. The doctor said I had a life threatening illness.
I was diagnosed with pneumonia in lungs and a shadow on right side with something on left?
I'm well now,I have to get fit and get out of breath to keep my lungs cleer.
Although with my esophagus problem thats now healed, my liver that's showing some problems I have to have another blood test and they say it could be because of lung infection. So I hope it's all going better now. I do feel better than I have for years.
Rosemary:roll-laugh:
August 19, 2010 at 8:07 pm #350417LizzParticipantGee, Rosey, what a scare, but I'm so glad you're over the rough part and are feeling much better. Take good care, Lizz
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