The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=18&m=2499694
Posted By : rjbeck - 8/28/2012 2:28 AM
Since 2005 I've been admitted to the hospital 26+ times with stays up to 30-days usually 3-5 day stays. Had both lungs collapse due to empyema (Pneumonia in pleural space)had to have thoracotomy on left lung to reinflate and have decortication (remove outside lining of lung)Because of large amount of prednisone use I developed avascular necrosis in 6 joints-all need to be replaced. Have had monthly fevers for about 5yr's that last about 48hr's Pulmo's don't know why and now want to do sweat test for CF at age 45. It just doesn't make sense. I've had every type of biopsy-bronchoscopy-mri-ct-scans pet-scans I think I've had everything known to man. I have never smoked and have had asthma since I'm 19. Never even traveled out of the country. I know I'm reaching but if anybody has any info I would appreciate it. Thanks Beck
AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS.
Pulmonary @UNC put me in the permanently disabled category due to severe restrictive/obstructive pulmonary disease. SSDI since 2007
MED'S-methadone 45mg's Bid---oxycodone 30mg's Bid--nucynta 100mg-Prn
Pristiq-100mg QD-Xanax 1mg-prn Nexium-40mg

Posted By : Morti81 - 8/29/2012 6:02 AM
Hi Rjbeck,

I have no experience with CF - just happened across your post. Have you ever considered an infectious disease diagnosis - specifically Lyme disease and it's coinfections? I ask because despite testing being available for Lyme disease it is notoriously inaccurate. It's also a widely misunderstood condition which left untreated can have serious complications in the long term.

I mention this specifically because of your monthly fevers which could indicate an infectious agent which cycles over a monthly period, which Lyme does and your joint involvement - which although you attribute to your use of prednisone - is characteristic of lyme as well. In fact if you were to have such an infection the use of high dose long term steroids is likely to make the condition worse as you suppress your immune system which is attempting to fight the infection you don't know you have!

I got the impression from your post that you have previously been healthy and if you are based in the US you certainly wouldn't need to travel abroad to pick Lyme up as its notoriously associated with the US.

Have you ever been bitten by ticks or had the characteristic bulls eye rash? Do you see improvements in your condition following antibiotic treatment?

Healingwell has a great Lyme board, so if you think it's a possibility why not go and introduce yourself over there.

Just some thoughts,

Hope things improve,

Hugh

Posted By : rjbeck - 9/13/2013 4:16 AM
Sorry for late response, since my last post I became really sick pulmonary wise. High fevers of 102+ with sob (O2 sats @89%on R/A and extreme pain in my Rt lower lobe and Lt lower lobe to the point I was unable to lay on my rt side.
I did see a Infectious Disease doctor @ University of North Carolina/Chapel Hill. They did every type of test known to man (seriously) I've had lung, diaphragm and other muscle biopsies and 5 bronchoscopies, PET scans Ct scans and MRI's everything was ruled out except for C.F. and bronchiectasis
NEVER SMOKED..
NOW I just have a lot of the pain and when I cough up It's been a grey or dark green color of 3-5cc of fresh blood. It seems that the blood is a big clot but bright red and it only lasts for 2-3 coughs, so about
6-8cc total. Maybe its a bleb? I don't know. I've been fever free for 36hr's but did have a continuous fever for about 7-days...I am calling the pulmonary doc's at UNC in the AM on 9/13/13
AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS.
ALL ORTHOPEDIC PROBLEMS DUE TO PREDNISONE.
BRONCHIECTASIS-BILAT PNEUMO'S 2005-2008
INTERCOSTAL NEURALGIA..
MED'S-Methadone 100mg's.
Became sick in 2005 at 38 now 46

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer