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Breathing and lung trouble after IV abx start..

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Posted 6/18/2016 12:25 AM (GMT 0)
Hi there,
Long time since my last post here.

I'm not sure where to start. It's in the middle of the night here in Sweden, but I'm struggling a lot, so I came here for the support :)

For about 12 days ago I started with IV antibiotics: doxycycline and metronidazol.
Two days ago I started up with rifampicin IV aswell.
I have been on all these antibiotics in oral for a long time, but they haven't done much.
The last week I have really started to struggle, especially when in the evenning and night. The problems I'm struggling with started maybe after 4-6 days on doxy and metro.

I have this feeling that my chest is not expanding even if I fill my lungs with air. I would guess pretty much the same way as if I had smoked 20 cigarettes a day for 50 years. I also feel that I can't fill my lungs with enough air. Constant pressure in my chest and ribs. If I breath with my mouth only, it feels like if I'm not breathing at all and that I'm right about to faint.
It gets a lot worse late at night, but instead of sleeping I'm lying here in my bed worried to death and wondering if I'm gonna end up in a hospital.
Another strange thing is that I have to focus on my breathing, because I'm not breathing automatically like normal.
All these things could sound like anxiety, but they are a result of the treatment I have started.

Haven't been in touch with my llmd yet, but he have said for over a year that he wants me on IV abx because orals are not doing anything for me + in his experience with neuro lyme and bartonella patients, IV works far better than oral only in most cases.

As I mentioned I have used the same meds. for a long while, but in oral form and I've had no trouble with them.

I don't want to stop, because I know this is the only way to hopefully get rid of this stuff, but at the same time I really don't want to end up in a hospital.
There's not much help to get here in Sweden/Norway so I'm kinda on my own like thousands of other patients..
Posted 6/18/2016 12:35 AM (GMT 0)
Ziz, that sounds miserable. I always hate it when I feel really sick in the middle of the night. You just feel so along. I am glad you came back here to share what you are going through.

It sounds like a herx, especially with the air hunger. Are you doing a LOT of detoxing? You have to get rid of the toxins. The IV is probably killing off a lot and making your body toxic.

I would also be concerned about an allergic reaction. I would definitely call your LLMD to make sure.

I hope it lets up for you. But don't wait too long to get help. Keep us posted, OK?
Posted 6/18/2016 12:52 AM (GMT 0)
I will, thanks :)

Just one fast follow-up regarding allergic reactions:

I have been thinking about the same, but I have been using all three: metronidazol, rifampicin and doxycycline in oral form for about 1 year without any trouble, so allergic reaction shouldn't be the case, right? I will call my llmd.

I can also add that some of these symptoms comes during night from time to time, but it's so rare and not this intense, so I kinda forget them.
Posted 6/18/2016 1:41 AM (GMT 0)
Hi Zizou,
I'm so sorry. I know how miserable those symptoms are. I agree with Denikeef on each of those things.

Here's a great link for detoxing ideas, and of course we're here to help you as best as we can with any of these: http://www.tiredoflyme.com/detox-methods.html

Something you can try if you haven't yet is raising the head of your bed about 6 inches, some found it most comfortable to sleep in a recliner. These symptoms sound like a Babesia herx.

Another thing, you don't have to necessarily stop the abx, but if you lower your doses for a few days and increase the amount of detoxing you are doing, you get get ahead of the toxins so you can continue treatment. Just a thought.
Posted 6/18/2016 1:43 AM (GMT 0)
Oops, forgot to say that no, you likely don't need to be overly concerned about an allergic reaction if those are you only symptoms that have started.

So glad you posted for support!
Posted 6/18/2016 4:15 PM (GMT 0)
Hi ZizouJR

All good input. I don't have much to add - sounds like a herx.

I've been on IV Rocephin for 16 mos. and started Vancomycin a couple months ago. I have a couple theories for why oral and IV abx work differently. I, for one, have hortible GI issues and don't absorb things wel through the gut. So I think people can have issues with that. Also oral meds can have more fillers and crap that people can react to. But The IV abx sure can hit pockets of the infection in a very effective way, and cause some crazy herxes. I would have weird pain all throughout my body.

You should definitely contact your LLMD. And if the problems continue, I would go to the ER just to rule out any serious/obvious heart/lung issues. I doubt it is anything serious (and for some, an ER visit can be stressful because ER staff are usually ignorant and often suspicious of Lyme disease/treatment as they are trained very differently than other medical professionals). But it could give you peace of mind.

If you have any other q's or would like to email me click the envelope icon beneath my screen name.

-p

Post Edited (Pirouette) : 6/18/2016 11:14:29 AM (GMT-6)

Posted 6/19/2016 1:53 AM (GMT 0)
DS had this happen early in treatment - his breathing issues got much worse. He is not on IV but orals. We ended up doing a couple of things. He got an albuterol inhaler.

He had to figure out how to keep from hyperventilating - breathing into a bag helped initially but things got worse and he had a bad episode that was hyperventilation with hypocalcimia (clenched finger, seizure type facial movements, lip area numb, nerves firing etc. His LLMD gave us a prescription for ativan to use if it started again. We worked on some breathing techniques when he wasn't hyperventilating and he uses his albuterol inhaler which is working for him (but doesn't for all patients, thus the ativan). The way they explained it was that the central nervous system is off and not sending the right messages back and forth to the brain. Albuterol and ativan can help that by relaxing the smooth muscles (hope I remember that correctly).

I feel DS did get better after about 2 months (less panicky breathing) although he says his breathing hasn't improved and it probably hasn't yet however, we haven't had to use the ativan yet. He uses the inhaler every 4 hours when awake.

Good luck.
Posted 6/20/2016 2:08 PM (GMT 0)
Thanks for all the replies, really appreciate that :)

I've been off both doxy IV and rif. IV this weekend and instead only taken them in oral form, and it got a little better. Still lungs like a heavy smoker, but no high pulse or breathing issues.

Have also sent my llmd a couple of mails and I hope for answer within a day or two.

Today I tried doxy IV(200 mg) and rif. as oral, and a couple of hours after, I started to get really heavy heartbeat and pressure in my chest. Been in the IR-sauna for 30 min now and it have actually helped a little. Don't know if these issues are herx or if it is a side effect. Strange thing that I don't feel any of these things when taking oral. Either my body is not absorbing the orals good enough, or it's just not as effective.

It does feel like there is something in my chest/lungs. I get this strange sound in my chest when expanding it. Maybe I have Chlamydia Pneumoniae without knowing about it.I have been on all sorts of babesia medications earlier without any sorts of herx, worsening or improvement. Used Mepron for almost a year and it was like candy, no reaction at all.
Posted 6/20/2016 6:41 PM (GMT 0)
Z-
I would try to call your MD ASAP. Get him involved in what is going on. i forgot to ask if you are doing IM injections, have a PICC line or an IV port?

-p
Posted 6/22/2016 10:50 AM (GMT 0)
I have tried to call him a couple of times now, Pirouette, but his office is full of patients so I hope at least he either calls me back or answer my mail. I trust him very much. Unlike many llmd's his also a internist and got a phd, so he knows his stuff. At least abx.

I have stopped all IV for the moment. I really want to continue, because the way I see it, it's my only hope. Tried only oral abx and I have tried herbs, but not very effective.

I'm using IV port. Did alot of first aid training when I was in the army, so it's easy for me to do it on my own. The problem with this sort of treatment is when stuff like this happends. I'm in Norway, my llmd is in Germany, and my regular doctor can't do much.

As for detox I'm drinking alot of lemon water + IR sauna 1-2 times a day.

One option now that I'm off IV could be to visit my regular doctor and get my heart and lungs checked. It's easier when I'm off IV, because if I tell my doctor that I'm using IV abx on my own, he will much likely tell me to stop all treatment and blame it on side effects or something(which it could be, but I don't know that yet).

Post Edited (ZizouJR) : 6/22/2016 4:59:48 AM (GMT-6)

Posted 6/22/2016 11:01 AM (GMT 0)
Ok - let us know what you hear back. My guess is he will slow down the Rx. You're obviously hitting something in the lungs/chest area so that is necessary but the herxing sounds too intense. Have you ruled out any yeast/fungal issues?

I had very similar chest sx that were a combo of sinus y/f infection that dropped into my chest, thanks to months and months of abx MDs kept giving me for a fungal sinus infection.

I think babs was also flaring at the time and that always gives me breathing fits - feels like a weight on my chest. I also had trouble exhaling - air hunger. Once I got further into treatment I felt less babs - they say babs and Bart can go dormant when you start treating for Lyme.

-p
Posted 6/22/2016 11:13 AM (GMT 0)
I was off all abx from 1. april - 30. may due to fungal issues. Had no big problems but my tongue was all green and yellow. Used fluconazol for about 2 months. So the way I see it, I don't think that's the problem, but tbh. I don't really know..

I also experienced some scary swallowing issues 2 nights ago. Was like my throat was paralyzed, but only for a few sec. at a time. Never experienced that before. Had to run outside and take a walk.

When I first started abx treatment for over a year ago I did 4 weeks of IV in Germany. After a couple of weeks I experienced some very bad herx, but that was related to my muscle trouble and was not scary. Just felt really bad. Can't remember that I had these heart and lung issues.
Posted 6/22/2016 11:19 AM (GMT 0)
With your previous y/f overgrowth issue it's wise to continue the antifungal Rx for as long as you continue abx. Did the Fluconazole reduce/eliminate y/f symptoms?

-p
Posted 6/22/2016 11:26 AM (GMT 0)
It removed the color on my tongue, but that was pretty much all I could notice. All other symptoms I had was related to my lyme + co.infection(s).
Posted 6/22/2016 3:45 PM (GMT 0)
OK--
there are many, many overlapping symptoms between yeast/fungal overgrowth and lyme & co. People are usually surprised how many sx disappear once they get their yeast/fungus back in balance. So just keep that in mind. For more info - you can reference my y/f post here:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Hope it is helpful - please let us know if you have other questions!

-p
Posted 6/24/2016 6:30 AM (GMT 0)
Agree with piro on fungal..there is still bvt and rife and mhbot as treatment ..nosode in germany is popular ..that flaglyl is a doozy and will drop most to their knees ... maybe pace it slower till body can catchup..i would also say get giemsa stain and look at with1000x microscopy for babesia.it is easy to do
Posted 6/25/2016 12:19 PM (GMT 0)
So I have been in touch with my LLMD and I told him the same things that I wrote in my first post.
He was quite sure it was a herx.

But tbh. I'm not 100% sure if it's a herx.

I have taken doxy only as oral the last days and it got much better. Started with 100 mg IV 2 days ago, no problems at all. 200mg IV yesterday, no problems. And today, only 10 min after I started IV(takes about 25 min to finish, so was about half way), I got rapid puse, pressure in chest, swallowing problems and feeling that my nose is tightening.

I thought herx reactions showed up minimum a couple of hours after you take the medication. I will talk to my llmd about this, it is kinda scary. I read about anaphylaxis, but that might be more severe?
Posted 6/25/2016 1:10 PM (GMT 0)
I know that you can have an allergic response to meds no matter how long you've been taking them without a reaction.

Yes, that does sound like an anaphylaxis response but also a "sensitivity" like I experienced. My nurse and I discussed the difference between a sensitivity to the IV drugs (itchiness, irritability) and a serious reaction due to allergy (anaphylactic like breathing problems, swollen airways, rashes). She said most people can tolerate the former and must cease them immediately if they have the latter.

I would try some OTC Benadryl to see if that helps. If so, you can continue taking the Benedryl but you're better off just slowing the infusion down. Nurses originally pushed my 1.5 g of Rocephin in quickly. I kept reacting so I slowed it down to 20 min and no longer have issues. My Vanco was on a 100 ml /hr pump and I had to slow that down to 2hrs at first but I am now back to 1hr w/ out reactions.

If slowing the infusions or Benedryl doesn't work... I would stop them and do trouble shooting again. I have a couple ideas... Let us know what you find out.

-p

Post Edited (Pirouette) : 6/25/2016 7:14:40 AM (GMT-6)

Posted 6/26/2016 9:42 PM (GMT 0)
A little update.

Today I used 50 min to finish the IV treatment instead of 20 min like normal. No rapid pulse, but got some pressure in my chest, feels more like it's close to the ribs and not inside the chest.
I will continue to take it this slow and hopefully slowly increase the speed.

Also been in touch with my LLMD through mail.

Will post his answers here, hopefully there's other here that can have use of it:

to your questions: “They show up about 10 min. after the first drip. Shouldn't herx reactions start minimum a few hours after I take the medications. Can it be something else?”

>>>>> no, I don’t think;

“I have read about anaphylaxis, or is that more severe?”

>>>>>anaphylaxis begins immediately after administration of a few drops of the causing substance and often is more severe.
If the dyspnoea is very large, you should also seek emergency in a clinic.

“1. On daily basis, even when not taking IV, I have issues with my lungs. As I mentioned earlier it feels like I have been a heavy smoker for all my life(which I have not). What could this be? It get's worse when on IV.”>>> as you had breathing problems at the beginning of your illness I interpretate your actual issues with your lungs as a late onset Herxheimer-reaction, which I could observe in comparable cases (the film goes back under effective treatment). I personally know one case of Borrelia-infection with manifestation of the illness in the trachea ( proved by biopsy from the Carina by positive PCR test for Borrelia DNA); concerning the literature in the appendix you find a published case where a sputum culture was reported positive for borrelia burgdorferi. I quote these cases to show that there are such manifestations of Lyme disease.

”2. Rifampicin gives me a bad headace sometimes. >>>>> I suppose that a Bartonella-Co-infection with cerebral involvement (which is typical for Bartonellosis) causally is eligible.
“And I also sometimes get very rapid pulse a couple of hours after doxy/rif IV.” >>>>>>> belongs to Herx-reaction
Is this something I should care about?”>>> If the worsening of symptoms during therapy becomes unbearable, I recommend total antibiotic break over 1-3 or more days, after that to start with the original regime again
best regards
Posted 6/26/2016 10:24 PM (GMT 0)
Glad you had a little success with slower infusions. Btw - you are also using saline + heparin locks?

Good for you in keeping the conmmunication open w/ him.

He had good, thoughtful and specific responses.

I do want to clarify the comment anaphylactic response for others who are reading. Anaphylactic shock is usually immediate but can also happen at any time, no matter how long you have been taking a med (I've read/heard this repeatedly but never looked into why-but I'm sure it is interesting). So you should have been prescribed an epi pen w/ the IV abx. If you weren't, have the MD order one ASAP. You'll likely NEVER need it but you should never infuse w/out it.

Herxes can occur whenever they like - so the 10 min. Rule doesn't really apply. I can't link to it right now but Alan MacDonald has stated that the reproduction cycle for Bb is US Mail kind of slow... So the abx can (theoretically) be hitting it as long as the abx is in the bloodstream. I can't remember what the half life of Rocephin is - my vancomycin is only 12 hrs.

-p
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