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I?m looking for some information and experiences relating to interstitial lung fibrosis.
Short history: Dx SD/RA 21 years ago, started AP Doxy 4 years ago when lungs and intestines started being affected by fibrosis. Also now have Pulmonary Hypertension. Small progress for first two years then flattened. Started with Naturopath last year, changed to mino 100mg daily with several natural supplements. Also taking frozen liquid shark cartilage and Vitalzym, both for the purpose of eating up the fibrosis. Definitely saw progress in intestines. Lung volume increased but O2 absorption did not. For approx 1.5 months have had what I thought was allergies but now appears to be bronchial and sinus infection. Breathing has been horrible. Doc gave me Amox-Clav 2-week prescription which I?m half way through. Healing is happening and breathing is improving slow and small amounts.
What sticks in my mind though is the question of whether the current protocol is enough to help reverse the fibrosis. The fact that the O2 absorption is less than half of what it should be scares the heck out of me. Am I missing something? Has anyone with fibrosis actually reversed it? If so, did you use anything different?
I?d be grateful to hear about your experiences.
On an upbeat note: Looking through many of the posts it?s wonderful to see so much positive energy flowing through this website. Thank you to all who reach out in trust for help and guidance. Thank you to all who respond so well with hope, love and encouragement!:D
Deb,
welcome to this site, there are so many helpful people here that know a lot.:D
I also have interstitial pulmonary fibrosis and went from 70% to 85% on my O2 over the last 17 months being on the AP. I do breathing exercise two or three times daily which helps a lot. I take two antibiotics; pulsing at this time. I am not sure what could help:( to increase your oxygen intake.
Eva:D
Eva Holloway
Hi Deb, and welcome to the Roadback forum. 🙂
Your story is not unlike mine. I also have SD and RA and improved on the antibiotic protocol, up to a point. It was then that we learned that I also had Lyme Disease that actually caused the SD and RA (Lyme can mimic or cause any disease). The antibiotics used to treat Lyme are numerous and in higher doses because it is more than one infection, and requires a doc who specializes in Lyme (LLMD). Now that I've treated Lyme I am 95% better with just a few nagging SD symptoms left and some joint damage in my hands that's probably here to stay. I know I've had many tick bites, but many Lyme sufferers don't ever remember being bitten so you can't rule it out based on that.
We are noticing more and more people with the Lyme/SD and Lyme/RA combos. Despite what the locals might think in your area, ticks and Lyme Disease are in every state in the country and grossly under diagnosed. Igenex Labs in California is the best lab currently for Lyme testing if you choose to pursue this angle.
Let us know if you think this makes sense to look into for you, and if so, we'll see what we can do to help you.
Take care…….kim
Deb,
I don't have lung fibrosis but I have a lifelong history of respiratory illnesses and at one time mild asthma (gone now), so taking very good care of my lungs and finding things that help me breathe well are something I've had a lot of experience with. I will share with you what works for me and maybe it will help you too.
#1-When I was diagnosed with mild asthma, the allergists medications did not help me a bit. My breathing became so difficult, I had to give up all forms of exercise. I was 35 at the time and a runner. Today, I am certain I was exposed to a mold that caused my issues.
What did help me immensely with my breathing was an herbal combo from Nature's Sunshine called ALJ. Please find a distributor in your area and give this a try. It is very safe and it supports the bronchial tubes. It was a wonder medication for me and it started my interest in natural healing.
#2-Eliminate mold exposure
#3-Exercise strengthens the lungs.
#4-VERY IMPORTANT! Glutathione. Please read up on this detoxifier. Our bodies have glutathione in every cell and is heavily concentrated in our liver and our LUNGS. Some of us have damaged dna from infection that has disrupted our ability to produce glutathione.
Your doctor may not be up on this and you may have to search around for a doctor who is. I can't stress this deficiency too much where your lungs are concerned.
When I was first diagnosed RA, I was swollen in every joint and I had serious heart palpitations. My doctor began weekly IVs of glutathione. I would feel incredible afterward and cleared sinuses was one of the most obvious improvements.
After 1 mth, he dropped to bi-weekly injections then to monthly injections and I received monthly injections for the first year of treatment. After that, I switched doctors as I found a rheumatologist who is a lyme specialist and I felt she covered all my basis best. She continued the glut but on a more sporadic basis.
Today I use glutathione suppositories. A gene test reveals I am very defective in my ability to produce glutathione. I take 600mg NAC (precursor which helps my body make glut) and I eat a detoxifying diet rich in cruciferous vegetables which also increase your glutathione levels.
Last summer, an allergist retested me and no asthma. I know it is the glutathione.
Here are a couple of organizations that train doctors in alternative medicine and these doctors are the best bet for getting glutathione. It is not dangerous. It is natural to our bodies and would really be worth trying.
http://www.functionalmedicine.org
You can look for a doctor in your area.
Good luck!!!!!
Susan
Hi Deb,
I have pulmonary fibrosis and I find NAC amazing. You can get this at any health store. My pulmonologist told me to take it. Suprising! My last pulmonary function tests were much better and my chest x-ray showed improvement as well. I am convinced it is as a result of an infection and healing it will take the PF away.
All the best,
Karen R
A pulminist is buying my lovely horse farm that I can't live on and he asked if I was on NAC so clearly even they know glutathione is very important to lung function. NAC is just one way to get glutathione. Most oral supplements are not sufficient.
Here is a very interesting article about glutathione.
http://www.medicinenet.com/script/main/art.asp?articlekey=50746
Susan,
I'm sorry you're having to leave your horse farm, but if you must, I'm glad you have a buyer. What will happen to your horses?
kim
My husband has reversed his fibrosis something his pulmonologist thought impossible. My husband is not completely back to normal and I'm sorry I don't have numbers within reach but he can now walk at a normal pace without getting out of breath. This is a long process and the first step was just to stop the progression. Then little by little he made improvement. We have CT scans and pulmonary function tests to prove his improvement.
I credit NAC and antibiotics especially Zithromax.
Hi Kim,
Thanks for your concern. I actually had to leave the farm after just 2 weeks. I had a serious allergic reaction to something there. Probably some mold. We had the home researched and cleaned, even though the mold found was very minimal ($600 to clean) and still I could not live there. I went to an allergist thinking I would try shots, but I did not test allergic to ANYTHING. This is a huge difference from 10 yrs earlier when I was allergic to all dust, mold, mildew and was mildly asthmatic.
So they can't treat what they can't find.
We have our horses boarded at a beautiful farm directly across from our home. It is the 2nd best solution, next to having them with me and I am very grateful for that.
Sad to lose the farm, of course.
Susan
[user=86]Susan Lyme/RA[/user] wrote:
Hi Kim,
We have our horses boarded at a beautiful farm directly across from our home. It is the 2nd best solution, next to having them with me and I am very grateful for that.
That's great, at least they're close. 🙂
I know a few individuals who have used photopheresis and reversed the lung fibrosis. Cubbymike, whom does not frequent here often, has been great success. I will e-mail her and have her contact you via private message. Best wishes,
JoAnn
Thank you to all who have responded!
I spoke with my ND and will be getting a “script” for glutathione. I'll also be seeing a pulmonologist next week for the first time. I'll update after that.
THANKS AGAIN!!
[user=13]Parisa[/user] wrote:
My husband has reversed his fibrosis something his pulmonologist thought impossible. My husband is not completely back to normal and I'm sorry I don't have numbers within reach but he can now walk at a normal pace without getting out of breath. This is a long process and the first step was just to stop the progression. Then little by little he made improvement. We have CT scans and pulmonary function tests to prove his improvement.
I credit NAC and antibiotics especially Zithromax.
Deb,
I just posted this message a minute ago. Perhaps you could take a look at this lady. Victoria was on oxygen and she was close to lung transplant and felt very sick. I did not read carefully about her PFT, it seems to me she is out of the oxygen now. I also talked to another lady (mrs. Erickson), she had the same situation and now her lungs are functioning really well. She said the scarrs are still there. It cannot be reversed by the transplant.
Victoria has been actively updating her recovery story of stem cell transplant. Perhaps you could go from there. http://victoriasmiracle.blogspot.com/ IMO, this is the “last weapon” for SD patients to use if all else failed.
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