- This topic has 33 replies, 17 voices, and was last updated 15 years, 2 months ago by
.
-
Posts
-
So, we're doing the happy dance here and will keep on hitting hard with the antibiotics.
P.S. For those wanting to know details:
Peripheral septal thickening especially at lung bases has improved.
Slight decrease in groundglass opacity at bilateral lung bases.
Fibrotic and cystic changes along periphery of bilateral lung bases is stable.
3 mm noncalcified lung nodule in right upper lob is stable.
Parisa,
It really amazed me to read the thickening at the lung bases has improved. That's a miracle because several doctors told me it is not reversible.
I am truly very happy for you and your husband. It's really a great improvement. Impressive. I am here dancing with you guys.
Cheers!
JB:roll-laugh:
Hi JB,
Thanks for posting. It hasn't been easy to get to this point. Plenty of doubts at time despite my conviction that we were on the right path. I see on your thread that you are having a hard time with the Zithromax. I know it's hard on the stomach. Don't be too discouraged. You'll figure out a dosage you can handle. I know some on this board seem to take just one Zith a week. Also, perhaps maybe you can convince your doctor to prescribe an IV series once a month. This way the Zith isn't going directly through the digestive tract.
Yeah, I know, the doctors think it's impossible to reverse any of this lung damage but I knew it was possible because I head read people's post here that had done it before.
Parisa,
Yes, I am feeling really low these days. In addition to my lungs, my shoulder joints have not returned back to normal. I am learning how to live with those pains each day.
My pulmonary doctor told me there is tons of inflammation down in the base of my lungs. The only way he could do is to perform bronchoscopy to suck the phlegm out so that it may prevent further scarring problem. I would have to do it once a year depending how severe it is.
I don't think this is a long term solution. However, I may have to do it next month if my X-ray is not showing any improvement after the IV zithromax. So I will have to wait and see.
However, I do feel a lot lighter in my lungs after the IV (even though I still cough like nuts, but I can at least breath better).
JB
[user=266]JBJBJB[/user] wrote:
Parisa,
Yes, I am feeling really low these days. In addition to my lungs, my shoulder joints have not returned back to normal. I am learning how to live with those pains each day.
My pulmonary doctor told me there is tons of inflammation down in the base of my lungs. The only way he could do is to perform bronchoscopy to suck the phlegm out so that it may prevent further scarring problem. I would have to do it once a year depending how severe it is.
I don't think this is a long term solution. However, I may have to do it next month if my X-ray is not showing any improvement after the IV zithromax. So I will have to wait and see.
However, I do feel a lot lighter in my lungs after the IV (even though I still cough like nuts, but I can at least breath better).
JB
Hi JB,
I don't envy you the Bronchoscopy, can I ask, do you do daily therapy on your lungs, you probably do, it certainly helps me and feel so much lighter afterwards. If not, what therapy do you do?
………………Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.JB,
I was wondering how you're doing………..sounds like you're still on the rollercoaster of ups and downs. I'm sorry it's been rough. 🙁
Sending you hugs and best wishes………kim
Parisa,
Thanks for giving us hope, and yet another case of AP's effectiveness. It has been a long road but your husband sounds like he's made it to the downward slope and it will be easier from here on out. Congrats! 😀
JB, I hope you feel better – am glad that it's a little easier to breathe. Here's hoping your lungs will turn around from the IV meds.[user=807]Rockin Annie[/user] wrote:
do you do daily therapy on your lungs, it certainly helps me and feel so much lighter afterwards. If not, what therapy do you do?
Annie,
I just called my mom in Sydney. I told her how cold over here is, 10 F, close to negative 12 C!!! :doh:
She sent the hot air over….. she said the cold weather could be a factor which makes my lungs act badly. Oh my, I really really wish I could teach in Sydney some day so that I could get out of this cold place.
Thanks for the suggestions. No, I don't do any lung therapy. I just take deep breath, in and out for about 10 minutes, several times a day.
:JB
Susan,
Thanks so much. Yes, Parisa indeed gave me a lot of hope even though I don't know if I have same problem as her husband but it's hopeful that the progression can be stopped soon.
Kim,
I have not yet bought the Sauna yet. I really need to act. I have problem breathing when it gets really hot. So I am thinking perhaps I should get the protable one so that my head is kept outside of the Sauna.
I will be okay. I need to stay positive.
Thanks,
JB
JB – dont envy your Mother too much. On Saturday, the temp on the coast in Sydney was 105 degrees. It was like living in a sauna! 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)[user=266]JBJBJB[/user] wrote:
Annie,I just called my mom in Sydney. I told her how cold over here is, 10 F, close to negative 12 C!!! :doh:
:JB
JB, the cold air is dreadful for my lungs, thats why I moved to Cairns, but also the humidity can be very taxing and takes my breath away sometimes, but I must say I do think the AP is having a good effect, or maybe its the MSM, either one I feel much lighter in the chest and can dance faster and not get puffed like I used too.
I also do my therapy, which is very deep breathing daily, I find its much better than the recommended lying head down for 20mins, does nothing for me except makes me dizzy :blush:………………….Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.[user=266]JBJBJB[/user] wrote:
Kim,
I have not yet bought the Sauna yet. I really need to act. I have problem breathing when it gets really hot. So I am thinking perhaps I should get the protable one so that my head is kept outside of the Sauna.
JB, I would recommend you get one where your head is exposed so you can breathe in fresh air. Your core body temp goes up so your head sweats too (Randy would be so jealous because he had to work for his sweat;)). Because the heat is killing bugs, I'm able to take smaller doses of abx and the sweating cleans out the debris…..it's all good! My only regret is not doing it sooner.
Parisa,
Wonderful to hear your news!!! I can't wait to post the same results for my lungs and I know that will be coming soon. JB please try NAC(N-acetylcysteine) for your lungs, it works great on the mucous.
Karen R:blush:
Parisa,
Do you think the LDN helped too? As you know my wife Kathryn has DM, and after she took Minocin, her heart that was previously affected, was soon normal (Triponin levels stablized). We are meeting with her family doctor next week, and will bring up the subject of adding other drugs (and weening off some too), so LDN, Clindy, and a few others may soon be on the table as options for Kathryn. She needs more sleep too.
On a side note, Kathryn lifted her legs out of the tub herself yesterday, for the first time in about 15 months!!! Its slow but sure.
-Jim T.
Karen – I'm looking forward to seeing a post regarding your lungs! My husband started NAC before he started antibiotics and it made a difference. Later on, while researching on the c. pneumonia site (http://www.cpnhelp.org) it was interesting to note that it is part of their protocol. They seem to feel that it goes after the c. pneumonia. So I think the NAC is actually doing more than clearing mucous. There's also the added benefit of it helping to protect the liver!
Jim – My husband has only been on the LDN for about two months now. Much of the lung improvement started aways back. However, one of the reasons I want him on it is for its immune modulating qualities. I figured whether or not we saw obvious benefit that he would take it for at least six months because of that. I'm so happy to hear that your wife was able to move her legs out of the tub. A major milestone! Is IVIG not an option for her? It has made a big difference for my husband's muscles and I assume the rest of the body/immune system.
Parisa,
Such great news for both of you! It is difficult to be partner or relative and watch someone be in pain or ill, I know it must be a great relief to both of you that your husband is doing better. I don't have pulmonary fibrosis, but I had severe asthma as a child that was returning a few yrs ago. About 2 yrs ago, 6 months after I had started AP the first time, my asthma symptoms completely disappeared. It happened so gradually that I didn't even realize it until I was cleaning one day and found the inhaler that I used at night under the nightstand. Then it dawned on me that I had not used it for about a month. Since then I've had no return of any resp. symptoms. Unfortunately, at that time, I began getting serious problems with my stomach and had to stop AP before any improvement showed up in the FMS or PsA symptoms. I restarted in Sept 2008.
I don't know what's worse, joint/muscle pain and fatigue, or respiratory symptoms; I've experienced both. It's definitely more frightening to have trouble breathing, I empathize with your husbands concern over life insurance. Sometimes I would wake up as a child and wonder if I that was the day that I would have the asthma attack that would kill me. Again, I'm so glad he's doing better! Now it's JB's turn!
One other thing, I had pneumonia so many times as a child (15 hospitalizations) that my lungs were scarred, and the doctors told my parents that they would not heal. When I turned 10 y/o, against my mother's wishes but supported by my doctor, I began to run on a track team and play basketball, I also took gymnastics. My lungs were completely healed by the time I was 12, and altho I still continued to have problems, they were not as severe. I know that part of the reason was that I was out of the house more (both parents smoked), but the point is that I too know that lung tissue can heal. It was no coincidence that I began to have skin and joint symptoms at that same age, I know now that I was already seeing the effects of the many infections I had endured, some of which I'm sure were mycoplasma. No coincidence that the abx that always worked best for me when I had pneumonia was tetracycline, it literally saved my life when I was 2.
Annyway, this was just supposed to be a congratulatory post and I've rambled on as usual. Thanks for sharing your success with us, Parisa!
The topic ‘ Lung Improvement!!!!!’ is closed to new replies.