Lung Granulomas

[Guest guest]

- both my husband and Macey has granulomas in their lungs. Their's

are calcified. The pulmo said that it either came from an old inactive TB

infection or some type of fungal infection. We've watched it over the years

and those that are there don't get any bigger but more have appeared. So

far we're not too concerned. Macey's were found about 4 years ago and Les's

about 3.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Ursula,

Thanks for letting me know about your experience. I did some quick online

checking and there does appear to be a small connection between granulomas

and immunodeficiency. Dr. Bleesing in Cincy has suggested we run an

angiotensin converting enzyme (ACE) test to check for a " sarcoid-like "

condition associate with immune issues. Do you know if Macey or your

husband ever had this? Dr. B is wanting Conner back in Cincy to do a PET

scan and possible biopsy of the nodes, so we will probably run other blood

work if we go-he also suggested ANA and PCR(?).

Anyway, thanks again, I feel better about the granulomas being there! By

the way, are the granulomas in addition to the cystic changes noted with

Macey? Did you ever get to talk to her pulm about that?

Take care,

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

immunodeficiency-SCIG, and now adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

[Guest guest]

As far as I know Macey hasn't had an ACE blood test. We have a first cousin

with sarcoidosis being treat at Emory in Atlanta so it is in the back of our

minds. A biopsy was considered but decided against it because only an open

lung biopsy could be accurate. Some biopsy's to the top of the lung can be

accurate by bronchoscopy but hers are in the lower and middle lobes. The

recovery from an open biopsy is difficult and not something she needs to

take on since it wouldn't change her care. She gets pulmicort in the

winter, singulair daily and when needed steroids. Our cousin is treated

very similiarly so we're happy. She has had an ANA but I've only heard of

PCR as a method to do a test not as a test itself. They keep up with her

SED rate and CRP so we know if things are inflammed.

Yes there are now cystic changes as well as granulomas and no I haven't been

able to reach who i need to at Egleston to have a CD copy of her scan sent

to her pulmo. I've just kindof taken the radiologists word for it (better

safe than sorry).

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Hi everyone,

I just joined the group. I'm glad to find people with common interests and

willing to share experiences. I have a few questions: Has anyone tried MMS1

and/or MMS2 to clear Lung Granulomas? and if so, what was the protocol? and How

successful was it?

Tahk you all in advande for your feedback and insight.