In the last three months I've gotten and solid dx with COPD.
I'm a **non-smoker** (always have been), have never been exposed to chemicals, nor do I fall into any of the other categories of other folks that get COPD.
It's somewhat of a mystery.
I'm looking for other non-smoking Lyme-ies that have gotten this dx and are completely mystified by it.
Thanks!
Keshvara
-------------------- Mal "Ready?"
Zoe "Always." Posts: 36 | From Pittsburgh | Registered: Oct 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What are your symptoms? I have been treating for asthma, but have wondered if it is indeed asthma because it doesn't seem typical.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I've had scarring in my lungs...I've never smoked, but I've had repeated pneumonia.
My lung issues and fatigue are my biggest complaint.
My mother just passed from COPD, but she had TB as a child and was a 2-4 pack a day smoker for 20 years. She had quit 30 years ago.
Her sisters passed away from COPD, as well.
I'm sorry you got this diagnosis. Have you thought about a second opinion?
Biaxin has helped me with my lung issues.
Posts: 2903 | From AZ | Registered: Feb 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
By the way...I like your Firefly references. I was just introduced to it...loved it.
Posts: 2903 | From AZ | Registered: Feb 2006
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Shosty
Unregistered
posted
Were you diagnosed because your lungs looked hyperinflated, or had excess air in them? Or because the lung function tests were not indicating asthma?
I found there were a lot of flaws in some of this testing. I also got the COPD diagnosis, but don't agree with it.
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posted
Look up , Alpha 1-antitrypsin deficiency
Posts: 789 | From CT, | Registered: Jun 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Al is so right. You need to be tested for alpha one antitrypsin deficiency.
It is a simple blood test at labcorp, not expensive. If it is abnormal please pm me, I can give more infos.
Also if you have this never take enzymes or arginine. And people having trouble with enzymes ( getting tingling...), many colds, kidney infections need to be tested for alpha one.
Posts: 1834 | From US | Registered: Oct 2008
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My dx came after 2 months of lung noises - rales, crackles, serious air hunger, exhaustion upon effort. I'm not overweight, and I don't have any heart problems.
Normal EKG. Normal BP.
I had 1 chest x-ray, and 2 chest ct's. All three radiologists (3 separate facilities) wrote reports on these tests that read as if they were literally cheating off each other papers the wording was so exactly the same.
My lung function test was perfect -- but when tested I was having a good day. I have good days and bad days totally unrelated to anything.
I have *no* allergies.
I then went to a pulmonologist. He confirmed.
So far, Advair is what has helped. I am worried, however, because of the steroid issue. In the 2-ish months of using it, my breathing has returned to normal (YAY!), but my CD57 count dropped from 126 to 60.
I am worried that I may be in for another Lyme flare.
The **only** thing the pulmo guessed at was that last year after an emergency appendectomy, I went with untreated pneumonia (even longer story) for 5 weeks. But he said that was a *total* guess.
So. There you have it.
Any one else who wants to chime in, please do.
Thanks in advance.
-------------------- Mal "Ready?"
Zoe "Always." Posts: 36 | From Pittsburgh | Registered: Oct 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Which dx preceded lung issue. Lyme or COPD? I have heard of a lot of patients with lung issues before Lyme diagnosis so...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
fyi, i've never smoked in my life!
drs. have said for years my lungs are that of a SMOKER since i've inhaled so much 2nd hand smoke from work and chain-smoking friends we played cards with every weekend! plus the early years of hitting the bars and dancing!
i have non-stop coughing, wear cpap for apnea, etc.
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posted
Pinelady - Lyme preceded COPD. First time in 2002, second time in 2007. COPD dx just a few months ago.
bettyg - I've been obsessively *NOT* around smokers since I was 18. I grew up in a semi smoking (mom) household, although I will say that my exposure was limited. I'm now 47.
I don't cough, don't have apnea.
What started my quest for a dx was feeling that I can only describe like someone popping bubble wrap inside my lungs. It started happening more frequently.
Then in addition to feeling it, I started to hear this stuff... weird sounds in my right, then both of my lungs. No coughing, no pain, breathlessness upon even slight exertion like washing my hair... but not all the time.
AND... at that time I've not been in active Lyme flare or even sick with anything else.
I was worried that maybe I was getting pneumonia again, or maybe it was the beginning stages of Lyme carditis (which I've had 2x). Nope.
Again... it's all a mystery.
Thanks for everyone's input.
-------------------- Mal "Ready?"
Zoe "Always." Posts: 36 | From Pittsburgh | Registered: Oct 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It may be that your cells are not able right now to
carry the essential O2 in transport. Or the blood
exchange system is messed up in Lyme. But I do know
I had sudden acute lung symptoms prior to
diagnosis. That was diagnosed as Histo. I think it
was Lyme. Multiple nodules. It disappeared. Or
moved as in so many things Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
My husband has pulmonary fibrosis from Lyme/Babesia. He has surprised the pulmonologist by not only stopping the progression but reversing some of the damage.
NAC (n acetyl cysteine) 600 mg 2 x a day has been an important part of his protocol along with antibiotics especially zithromax.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I was DX'd with COPD in January, 2008 and a non-smoker like you Keshvara.
My condition started with severe SOB. My primary doctor ordered a spirometry test. Results poor. He referred me to a pulmonologist.
The pulmo ordered a CAT scan with a type of gas that extended my lungs and results showed COPD in lower quadrant of left lung with both lungs extended. Some of the large aveoli(?) were flattened.
Very soon afterwards I began having severe chest pains from my ribs being over-extended which made any movement intolerable.
It took days to get a prescription for Advair 100/50 and another week for it to begin working and neither doctor seemed concerned in any way that I wasn't able to breathe in or out except when I was on my CPAP at night. Those 2 weeks seemed like an eternity.
I was finally increased to Advair 500-50 twice daily which has helped.
I have not been DX'd. with lyme yet but saw an LLMD 7/20/09 and will know my results as soon as they return from Igenex.
I did go to Baylor/Dallas for a 2nd opinion on the COPD and the pulmo there told me I didn't have COPD but he questioned the numbers on my spirometry test when they showed lower while on Advair treatment versus non-treatment before being diagnosed. I was sent home still not knowing what was in my lungs.
Since I was in denial I had COPD I asked my local pulmo if he could determine if I has asbestos in my lungs since I worked at a mfg. facility that had asbestos in the ceiling.
He said the only way to tell was do an open-lung biopsy and it wasn't necessary. I think he felt treatment was the same so the procedure wouldn't be beneficial.
After reading your posts the pieces of the puzzle may be coming together. I think it is lyme or a co-infection. Either way, it will be bittersweet.
Wellness to all.
Lady
Posts: 245 | From Texas | Registered: Jul 2009
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