ILD, scleroderma, xrays, ct's

[Luck20]

How often do you all get lung tests done? Especially in the beginning?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Cheryl F]

Hi Luck20:

When my daughter was first ill and she had lung involvement, the local doctor ordered the PFT twice in 3 months. After that she wasn’t having symptoms so she didn’t do it again for about a year. Then at about the 2 year mark, Dr. F in Riverside ordered a PFT. We had it done just to humor him, but didn’t think it was necessary because she had already improved enough to participate in collegiate competitive swimming. That PFT was fine and she hasn’t had any diagnostic tests of any kind, not even labs, since 2011. She says she doesn’t have time to go to the doctor. What’s a mom to do? She’s too old to send to her room without supper.

Cheryl

[Luck20]

Thanks for the reply! So she never had a ct scan? How bad were here lungs? Are they fully recovered after AP?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Cheryl F]

Oh, yes, sorry, I didn’t answer that part. She had one CT. It showed the “ground glass” lung involvement. That was at the beginning of the diagnosis. She saw the scleroderma specialist at UCLA and that doctor wanted her to have a repeat CT. She said that she was not going to spend that money (20% copay) and subject herself to added radiation. So, she didn’t. We had a local AP doctor rheumatologist who was willing to prescribe if she saw him once per year. She did that through about 2014 and hasn’t seen a doctor (for herself) since.

[Cheryl F]

Her lungs showed DLCO of 60%. She became short of breath walking about 20 steps or up the stairs in our home. The CT showed some ling fibrosis. She assumes she isn’t having issues based on her regular activities. She is not fatigued even after working 12-14 days, tired yes but not fatigued. After she recovered, she participated in 4 years of college swimming, one year she won a national Title. Since leaving college she continued to swim when time allowed. In spring 2015 she completed the Los Angeles Marathon. She is currently training to run the San Francisco Marathon in July. She is currently running about 40 miles a week to train. I wish she would go get labs, but she REALLY doesn’t have the ability to take time during the workday to go to a doctors appoint, it’s really sad but completely true. When she took a week off when her dad had a liver and kidney transplant and she was ridiculed by her supervisors.

Cheryl

[Luck20]

Thanks for the reply! Yes, too many cts make me nervous too.

Its great shes doing so good. Its really inspiring!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

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