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Second attempt with antibiotic therapy leads to severe respiratory problems

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Posted 2/13/2015 3:48 PM (GMT 0)
I was "officially" diagnosed with Lyme in July 2014, turns out (based on my CD-57 # of 45) it's been in a chronic stage for years. In October, I started a regimen of Rifampin and Minocyclin but after two weeks became so sick with an upper respiratory infection that I had to go on an inhaled steroid for several weeks. Was then tested for Babesia and that was positive. Started back on new Lyme antibiotics, Mepron (for Babesia) and Minocyclin (for Borrelia) and exactly two weeks later now have another severe upper respiratory infection and back on inhaled steroid and albuterol inhaler. My M.D. wants me to stay on the Advair (inhaled steroid) this time for 3 weeks and then she wants me to undergo intensive pulmonary function testing. I did not want to go on the steroid, knowing it's contraindicated for Lyme, but my doc said I'd end up in a hospital if I didn't go on it. Am seeing a naturopath who has yet to respond to my 2 phone calls the past two days since becoming so sick so very frustrated. I can't help but think the antibiotic therapy is doing something to my lungs, maybe there are Lyme spirocetes in my lungs that are fighting back? But I can't stay off the darn steroids and they're setting my Lyme therapy back. Please help!
Posted 2/13/2015 4:35 PM (GMT 0)
Hi Peg!

That sounds horrid. Did you start both antibiotics at the same time? A lot of times if our systems are already overloaded with antibiotics, many people have to start with just one antibiotic and gradually titrate up the dose. Even though allergy medicine is also contraindicated in lyme I had to take it the first month or else I had trouble breathing (nothing as bad as you describe though). Sometimes steroids are necessary. It is best to listen to your dr of course too.

Have you been in treatment since July? Made any strides? If the ND doesn't work out you might want to try another one or get in touch with an herbalist. Sorry for all the questions. Lyme is really a tough road but many many people get better it just takes time, the right cocktail, and the right doctors!
Posted 2/13/2015 5:34 PM (GMT 0)
It sounds like the respiratory infection in the first case was part of a herx reaction to the antibiotics. The first course of antibiotics I was on for Lyme gave me a sinus infection, and which the antibiotics then treated. It sounds crazy but it happens.

It sounds like your weak area for your herxes/die off is your lungs. Your doctor doesn't seem to understand Lyme/herxes...are they Lyme literate?

I agree that you should try an herbal route since you're reacting so strongly to the antibiotics.

Edit: Also when I started seeing my LLMD, the first thing she did was take me off the Advair because it's a steroid. You really don't want to be taking that.

Post Edited (sarahm620) : 2/13/2015 10:37:54 AM (GMT-7)

Posted 2/13/2015 5:43 PM (GMT 0)
Hi Nhpegt,
Welcome to our community! I'm so sorry for all that you are going through!!

I was also wondering if your docs are ILADS trained, Lyme literate docs? If not, I would definitely get in to see ones that are! They are likely in over their heads with this.
Posted 2/13/2015 6:22 PM (GMT 0)
Hey nhpegt, something doesn't sound right. So you get an infection of the lungs and they put you on steroids (anti-inflammatory and immune suppressant) to fight the infection? Steroids don't kill bugs, so how is that possible?

What I think is happening is that the antibiotics are stirring up your bugs inside and they are responding with inflammation of your respiratory tract. Of course, if you can't breathe you die, right? so you must take the steroids to live.

However, why don't you start with just one antibiotic and maybe a lower dosage and see if your body can tolerate that without going bonkers. Sometimes doctors prescribe without thinking of the consequences (thus Traveler's suggestion for a ILADs doc) and the dosage may be too much for your poor infected body.

Even if you don't kill the bugs, you can at least keep them from multiplying by doing a lower dosage and this may be enough to give your body time to get adjusted to the medicine and for the bugs to start dying slowly.

That's what I think anyways.
Posted 2/13/2015 7:56 PM (GMT 0)
Thank you all for your suggestions/thoughts. I am seeing a naturopath ND who specializes in Lyme and has had Lyme herself and has come highly recommended in my community. I don't know if she's Ilad's certified. My M.D. is NOT in agreement with the long-term use of antibiotics for my Lyme treatment I am going through and thus it has been difficult to work with her on possible alternative solutions (besides the steroids). But I had to agree to the inhaled steroid since I wasn't able to breathe and was extremely short of breath and was getting weaker by the day. My lungs aren't "infected" rather they're severely inflamed (my doc said the antibiotics I'm on would certainly prevent any infection to the lungs), plus the chest X-ray showed major inflammation of both lungs. My naturopath's assistant JUST called me back (left a message 3 days ago) and said to stop the Mepron/atovaquone and she will discuss this with the ND on Monday (breathing difficulties are prevalent with Mepron apparently!). I'm starting to wonder about my ND now to be honest. She knew this breathing difficulty already happened to me so why would she put me on a drug that can create breathing problems? I think I need to go to the LDA website and find a doctor that is, as you say, ILADS certified. This is the most frustrating experience to go through! I feel so badly for those of you, too, who have to struggle with Lyme!
Posted 2/14/2015 6:12 AM (GMT 0)
Hi Nhpegt, welcome to the forum!

I too had a breathing diffuculty with Rifampin. To this day, I cant pinpoint the exact cause but I have some various things in mind.

A. As everyone above mentioned and this is highly the most likely-It could have been too strong of a die-off reaction(Herx) for the body with the two abx together (if the bodies bacterial load is high this will cause a major die-off more than the body can handle to detoxify at once-hence a MAJOR herx reaction

B. If you have Bartonella co-infection, it causes major anxiety when it dies off in which anxiety itself I have learned will affect your breathing more than you would think it will. OR since you have babesia, it couldve have came out once you hit the other infections.

C. If your adrenal's are severely fatigued, Rifampin can cause to go in adrenal crisis

D. Sometimes Sarcoidosis can be triggered by lyme/bartonella herxing

E. Rifampin is actually considered a 'cyst-buster' by some llmds I have read (Dr M.R. states this on his website) so it possibly couldve stirred things up if there was much bacteria encysted (i.e. in the lungs). (The most common cyst busters are known to be either Flagyl or Tindamax though)


Its late right now and Im rather tired but I just wanted to chime in on this topic as I had a similar reaction and it was a pretty scary point in my treatment. Its hard when your breathing is affected...we HAVE to be able to BREATHE right! I had stopped Rifampin when I had that reaction and it took approx 1.5-2 months to get my breathing back to normal and before I started back any antibiotics again. I have considered taking Rifampin again but I chicken out every time because I am scared of that breathing reaction. I would not reccommend the steroids if you can help it. I used the non-steroidal Albuterol for probably a good month though as needed.

I cant say if what you are going through is the exact same thing I went through but I just wanted to share and give some insight. Feel free to shoot me an email if you would like to compare symptoms you are experiencing to what I had. If you are maybe experiencing similar, I can refer back in my lyme journal to tell you some things I did to get through that time period.

I hope you feel better soon :)

-Courtney
Posted 2/14/2015 6:16 PM (GMT 0)
When I started reading the initial post I wanted to start yelling WHOA WHOA WHOA! Don't stop your abx just when you're getting a good kill!

A similar thing happened to me over New Year's and I ended up in bad shape (in PCU, on a BIPAP for breathing assistance)-- but I'm OK now. In fact, much better than before! I and my LLMD are sure it was a healing crisis, a toxin release caused by a massive dieoff, meaning the abx were killing bugs.

At the hospital, they tried to tell me I had a COPD exacerbation but I don't have COPD, how can it be exacerbated? They treated me for pneumonia even with a clear Xray! treated me for Influenza despite a negative test! and gave me massive steroids while in hospital, which I discontinued as soon as I went home after my breathing eased. The steroids got me through the crisis, and there was no arguing against that.

Might be time to get down to basics with this crowd of docs. Here's a couple critical thinking questions to ask:
Is there an objective basis for this diagnosis of a URI? Like an X ray or elevated wbc count? (Or is it the guess/excuse for attacking your LLMD's treatment plan)

How can it be a respiratory infection if I'm already on abx that are not just good, but GREAT at killing lung infections?

Have the inhaled steroids been working, improving your breathing? (You need to be breathing as a first step to continue living... and once the crisis has passed, you can discontinue them)

No objection to a PFT, it's good to have a baseline for your pulmonary function anyway. By the time you get in there you'll probably surprise them by being all better, haha. The PFT is a simple test, (a kneejerk test order from a conventional doc,) and not a big deal at all.

Babs is well known to cause air hunger and breathing problems. It sounds to me like you got a huge herx as a result of your med change, and need to hit the sauna and start sweating that junk out. Sweating 30 min a day is the equivalent of 6 days' work by your kidneys, so it's the only way to get ahead of this.

If it was me, (and it was, just one month ago) I'd continue the LLMD's treatment plan, take the steroids till you're breathing improves or your LLMD tells you to stop, stay hydrated, avoid dairy, and hit the sauna like crazy. You'll get better!
Posted 2/14/2015 10:07 PM (GMT 0)
My MD did not believe my lungs were infected, she is concerned that I have COPD or another lung condition. I couldn't even take a deep enough breath without having a massive coughing fit so she said the steroids were necessary to open up the airways. I'd been doing Albuterol at home for days but it was obviously not enough, was getting worse. Chest x-ray was clear for pneumonia and flu test was negative. I'm doing much better today and actually haven't needed the Advair, though I will take it just before bed since nighttime is the hardest time for me with coughing fits.
I'm going to have a long talk with my naturopath. I have no understanding of what a "herx" event is and what many of you talk about with regards to the lungs possibly being my spot for the cells to go to die. I also don't understand the sweating to get the toxins out. From what I've read, no strenuous exercise when undergoing Lyme treatment? I've just never heard of sitting in a sauna to sweat these dead bugs out. I'm feeling so ill-informed, am hoping my naturopath will explain all of this. If not, I think I need to find someone else to work with. I'm so grateful that you all have responded and given me some new information, thank you so much!
Posted 2/15/2015 12:42 AM (GMT 0)
When the bacteria are killed by antibiotics, they "lyse" or self destruct, spilling their contents into the surroundings (bloodstream). These toxins, now in the blood, circulate throughout the body but are particularly good at causing pulmonary problems, so those tissues are affected and become inflamed, causing restrictive/obstructive problems with breathing.

The steroids quiet this reaction down, and pretty quickly (couple days) your body can rid itself of the toxins, with the kidneys working overtime to correct the problem. This is why the sweating in a sauna helps. It lets your body excrete the toxins through the skin too, clearing the toxins out more quickly.
Posted 2/15/2015 12:13 PM (GMT 0)
I've been reading on this thread but haven't commented since I haven't had any experience with respiratory issues during treatment. So sorry you had to endure this!

SpeyFisher did an awesome job of explaining herxing and what can be done about it.

I found this site particularly helpful with its description:

http://www.tiredoflyme.com/the-herxheimer-reaction.html#.VOCN7-bF9s4

And, another section of the site shares detox methods that help us minimize herxes:

http://www.tiredoflyme.com/detox-methods.html#.VOCOyebF9s4

Hope you feel better soon!
Posted 2/15/2015 12:21 PM (GMT 0)
Oh, for whatever it's worth....herxes often include not only an exacerbation of current symptoms but the possible addition of new ones. And, they won't necessarily be the same each time.

I've been in continuous treatment since mid-September of last year and just started a new protocol. I developed some pretty significant stomach issues that I never before had as symptoms. Thankfully, they dissipated and I'm back to baseline.

This is how things go (joy - not lol)
Posted 2/15/2015 4:07 PM (GMT 0)
And we are here to help you find the answers you need and to help give you the support you need to get through this!!

Again, please be sure that your doc's are ILADS (International Lyme and Associated Diseases Society) trained!! All you have to write down is ILADS - if they are trained by that society, they will know exactly what it means - if not, they aren't qualified to treat you anyway. You surely wouldn't want a Podiatrist to do brain surgery!
Posted 2/15/2015 11:31 PM (GMT 0)
Thank you all SO MUCH for the amount of information you've given me as well as your obvious concern and support!

Can I ask those of you who are doing herbal-only remedies, is that through an ILADS-certified practitioner as well? And was it a longer-duration treatment program than it would be with antibiotics? I'm starting to think maybe this is the route I need to go, these antibiotics are very concerning to me. Maybe you can tell me, also, why you chose to go herbal-only?

Many thanks, once again, for your help! I hope one day I can help someone else with insight I've gained!
Posted 2/16/2015 8:54 PM (GMT 0)
For me, it has not been through an ILADS certified practitioner - but that's because there aren't any in my state no matter what type of treatment you are looking for. So I've been on my own - but it was still worth it for me.

As for the time it takes, I used abx for a year (2007) and only got much, much worse. Yet when I spent a year on herbs for Lyme and Bart - I was healed. So it was the exact opposite for me - less time for me to heal using herbs only approach.

As for my reasons for going all herbal - it's as I explained above, plus I've always responded a bit better to natural treatments. At this point, I haven't used a pharmaceutical drug since 2010 and hope I don't have to ever use them again. They are there if I really need them, but I'm hoping to avoid them from here on out.
Posted 2/16/2015 10:38 PM (GMT 0)
Thank you, Traveller, and God bless you for putting this wonderful group of helpful, caring people together. I'm happy to have found you.
Posted 2/16/2015 11:32 PM (GMT 0)
Thank you for your kind words, nhpegt - this isn't "my" group - they just can't get rid of me!! turn LOL!!! We are very happy that you have found us too!! We really do care and want to help each other here!
Posted 2/17/2015 3:48 PM (GMT 0)
nhpegt, I'd like to echo that you find an ILADS trained doctor. It's fine to keep working with the ND you currently have, but you need another opinion and someone else who knows more.
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