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» LymeNet Flash » Questions and Discussion » Medical Questions » Longtime lung issues from lyme

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Author Topic: Longtime lung issues from lyme
ladyjenie
LymeNet Contributor
Member # 21098

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If you have lyme in your lungs how does it present and what treatment are you using?

I was dx'd with COPD/asthma 2 years ago, a non-smoker, and recently dx'd with lyme although I have been ill with classic lyme symptoms over 10 years and misdiagnosed with RA.

My breathing has become much worse lately. I am on Advair 500-50 which isn't helping. My pulmonologist is unaware I have lyme.

I am interested in how quickly this spreads and if lyme treatment reverses any of the damage.

I also have sleep apnea and use CPAP.

Posts: 245 | From Texas | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Parisa
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ladyjenie,

My husband has pulmonary fibrosis from the Lyme and/or Babesia. Treatment with antibiotics first slowed the progression and now it's actually reversing the damage, much to the pulmonologist's surprise.

Zithromax is especially helpful. Also, NAC (n acetyl cysteine), a supplement is very helpful.

Posts: 984 | From San Diego | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
ladyjenie
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Parisa, I hope I can find a LL-lung specialist as knowledgeable as your husband's so I can find out if my condition can improve. I will definitely get the supplement.

I live in a small town, we are fortunate to have a pulmonologist but I don't put much faith in the one here.

When I was dx'd a couple years ago I was having severe SOB. Spirometry, x-ray, and Cat confirmed it was COPD. I wonder if Lyme mimics COPD on film?

Since I am a non-smoker and was in denial, I went to Dallas/Baylor for a 2nd opinion last year. Had all the breathing tests again and did worse than before being on any steriod (Advair) which amazed the pulmo doc there, he thought my #'s would improve.

This pulmonologist said I did not have COPD. He didn't say what it was but not COPD. Made me even more confused.

Now I'm thinking it is lyme and I'd like to go to someone who knows how to test for lyme since my pulmo here said the only way to know for sure is to do an open lung biopsy, OUCH!

I could never survive that, too ill. Since I have just been dx'd have not started ABX yet.

Keeping my fingers crossed this is reversible.

Thanks for your help.

Lady

Posts: 245 | From Texas | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
JamesNYC
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One pulmonologist says it's COPD but the one in Dallas says it's not and doesn't know what it is???

My God, CT scans, etc and they disagree on lung damage? What is wrong with these clowns?

I don't know much about COPD or lyme in the lungs. BUT.....

Are you sure you don't also have babesia? That would exacerbate your other symptoms and make the effects of COPD (or whatever it is, if anything) worse.

Babesia attacks red blood cells and effectively makes one anemic. You will have fewer red cells available for carrying oxygen. Ticks will often carry babesia along with lyme (among others).

The symptoms are "air hunger" (gasping for air), and sometimes a feeling of difficulty breathing, asthma-like tightness in the middle of the chest (I have experienced this, it's very scary).

Also, one will tend have unusual shortness of breath after doing light exercise, like climbing stairs. Sort of a general feeling of being suddenly being at high altitude.

Finally, babesia is known to cause people to wake up during the night, often multiple times. A sleep apnea type symptom (though I don't know how it is differentiated from typical sleep apnea, maybe it is one type of cause? I'll have to research this).

There are other symptoms too that are similar to lyme, you can check the symptom list.

I would suggest you look into babesia, you have the symptoms, and at least rule it out.

Good luck,

James

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lundeliz
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Hi ladyjenie,

About 18 mos. into my lyme treatment, I developed really severe shortness of breath.

On x-rays my lungs looked kind of white gauzy, instead of black like they should. So my pulmonologist wanted to do a biopsy.

They diagnosed me with Hypersensitivity Pneumonitis, which I think is basically inflammation.

I've always wondered if it was lyme in my lungs, because of course they didn't test for that. I went on 6 mos. of steroids, which did help the inflammation.

I'm not recommending steroids, because it can make your lyme much worse. But I felt like I had no choice. I needed to breathe. And my lyme
doc at the time wouldn't give me any direction.

I still have minor breathing problems, my LLMD has me trying Spiriva, which I think is helping.

I hope you are seeing a good LLMD who will know how to handle your breathing problems. Good luck

Posts: 72 | From SW Texas | Registered: Dec 2006  |  IP: Logged | Report this post to a Moderator
   

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