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- This topic has 16 replies, 6 voices, and was last updated 15 years, 2 months ago by Rosey UK.
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August 4, 2009 at 5:16 am #302517ParisaParticipant
I have been saying for a while that I was going to post research I had done several years ago when my husband first became sick and his lungs started to go south. The following research was my guiding light that I stuck to no matter what the pulmonologists and rheumatologists recommended.
1. http://www.chestnet.org/education/online/pccu/vol16/lessons13_14/lesson13.php
This is an enlightening piece published in Chest. Basically it says that not alot is known about pulmonary fibrosis and that neither treatment with corticosteroids or cyclophosphamide or azathiprine has shown any benefit. (Amazing that the pulmonologists push these drugs with such horrible side effects while refusing antibiotics!)
2 http://ajrccm.atsjournals.org/cgi/content/full/156/6/1897
Study showing improvement in 18 patients with fibrosing alveolitis when treated with 600 mg of NAC three times a day.
3. http://www.medscape.com/viewarticle/508001
This study shows treatment of patients with COPD with NAC. Once again the lungs improve.
4 http://aac.asm.org/cgi/content/abstract/50/2/739
Study shows that doxycline can slow down the progression of pulmonary fibrosis.
5 Richard Firshein, The Neutraceutical Revolution and Reversing Asthma. These books have alot of information regarding the general health of the lungs. Firshein is also a strong believer in the use of NAC.
Others, if you have research regarding the lungs, please feel free to post on this thread. I know I'm missing research on treatment with enzymes and fibrosis. I had it somewhere but seem to have misplaced it.
August 4, 2009 at 6:56 am #332595Margaret MuellerParticipantVery nice work, and needed. Thank you for this effort.
August 4, 2009 at 11:52 am #332596KimParticipantHey Parisa,
I just have to say what a joy it is to hear your husband has truly turned the corner. Your persistence and patience have surely paid off in a big way and you deserve a pat on the back. He was a slow responder and it took guts to stick with the program that you so believed in, so another pat on the back. 🙂
Hugs to you both…….kim
August 4, 2009 at 8:53 pm #332597Rosey UKParticipantHi Parisa
Please can you tell me what exactly you put your husbands much improvement lungs down to. I am really bad now with my pulmonary fibrosis and frightened. Any help from you personaly would be good.
Thanks
Rosemary
August 4, 2009 at 8:55 pm #332598Deb-AZParticipantParisa,
Please include info for me as well. My lungs are really having a tough time right now. I just started inhaled glutathione using a nebulizer.
Thanks,
Deb
August 5, 2009 at 4:39 am #332599ParisaParticipantDeb,
I know NAC is a precursor of sorts for glutathione so I'm sure you won't be going wrong with the inhaled glutathione.
Rosemary,
NAC (N acetyl cysteine) is a supplement that you should be able to buy over the counter. My husband takes 600mg, two times a day. If you think yeast is an issue, a course of diflucan can make a difference. My husband had candida in the lungs from all the prednisone and he made some good improvement on diflucan lungwise.
In addition, he made really good progress on Zithromax and he treated for months on it. I know most doctors only want to prescribe it for small amounts of time but we're not talking about the typical prescription protocols here.
Treating for babesia made a big difference also. Just keep working toward figuring out what the cause of your disease (Lyme, mycoplasma, babesia, c. pneumonia) is working toward wiping it out. If one antibiotic isn't doing anything for you, switch it up. If you can't get the antibiotics in England, try to make a trip somewhere where you can get better treatment. Just research and do what you can do to move your treatment in the right direction.
August 5, 2009 at 4:41 am #332600ParisaParticipantKim,
Thanks for your kind words. You're right, my husband was a slow responder as it took us a while to put together the right protocol. However, I had read enough stories here to know that there were patients who took a while but eventually turned things around and that kept me motivated even when things were at their worst.
August 5, 2009 at 2:42 pm #332601Rosey UKParticipantHi Parisa
Thanks for your help. I didn't sleep well last night and I'm crying a lot today because when I searched pulmonary fibrosis on the net one site said 4-5 years to live at the onset and the other 5 years.
Some of the info said Neprinol reduced scar tissue build up. I also looked up NAC and thats amino acid, detoxifys system and helps skin elasticity.
Have you heard of Neprinol?
Thanks
Rosemary
August 5, 2009 at 9:22 pm #332602KimParticipantHey Rosey,
I take Neprinol and think it's a wonderful product. It definitely helped dissolve scar tissue and thin out my thick, sticky blood. People usually start at a much higher dose and then wean down to a maintenance dose. You need to take it on an empty stomach, otherwise it's just an expensive digestive enzyme.
Take care…..kim
August 5, 2009 at 9:38 pm #332603Deb-AZParticipantDoes the Neprinol help the scar tissue in the lungs?
Deb
August 5, 2009 at 9:55 pm #332604Rosey UKParticipantYes Deb
if you google neprinol all the info comes on and it does Eat up the fibers in the lungs.
Thanks Kim for sharing that I think I should try it too.
August 5, 2009 at 10:09 pm #332605MazKeymaster[user=115]Rosey UK[/user] wrote:
Have you heard of Neprinol?
Hi Rosemary,
I also use Neprinol and also take 600mg (1 cap) of NAC, along with Alpha Lipoic Acid and Grapeseed every day. The NAC is a precursor to glutathione, which has also been shown to help the lungs and the ALA and Grapseed are both antioxidants, which clear the body of damaging oxidative substances and also help to reduce inflammation in the process. I love Neprinol and have used it for about 17 months now. It's quite expensive, but it works for me, though it probably took a few months to see any real benefits.
Peace, Maz
August 5, 2009 at 10:37 pm #332606Deb-AZParticipantI've been taking VitalzymX (10-15 pills per day) but it hasn't been helping.
I'll try the Neprinol instead. I see they have a 300 count bottle available on the Neprinol. How many pills per day is appropriate when trying to reverse scarring?
August 5, 2009 at 11:30 pm #332607MazKeymaster[user=105]Deb-AZ[/user] wrote:
I'll try the Neprinol instead. I see they have a 300 count bottle available on the Neprinol. How many pills per day is appropriate when trying to reverse scarring?
Hi Deb,
The suggested daily dose on the side of my Neprinol bottle is between 1 and 4 caps a day, three times a day, between meals with a full 8oz glass of water. When I started, I took 3 caps 3 times a day, but now that my inflamm levels are down I only take 2 caps once a day for maintenance.
Peace, Maz
August 6, 2009 at 2:38 am #332608ParisaParticipantRosemary,
My husband spends little time on the internet researching his disease but when he did he always seemed to focus on the negative. He'd tell me, “according to this I only have a few more years.” I acknowledged the bad news but stayed motivated by the research I found that said we could stop the progression and possibly reverse it. Focus on the positive and keep moving toward your goal.
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