Lyme Disease Support Group

My tests aren't back yet, but my LLMD diagnosed me with Lyme and Bartonella at our first meeting.

I started Rifampin (600 mg/day) and Zithromax (500 mg/day) on July 12th. My main symptom in all of this has been recurrent pericarditis, so of course, I have been experiencing chest, shoulder, and arm pain since the first day I started the meds.

Luckily, ibuprofen takes some of the edge off even though it could never touch the pain of pericarditis in the past. I see that as a positive.

I'd like to hear from others with Lyme and Bart who have experienced a herx of pericarditis. How long did it last? What was your experience?

I feel like death most of the time. I am fighting through this herx.

Thank you,

Hazeldee

Do they know what is causing your pericarditis? I had a positive coxsakie virus in jan, and also babesia so I think that's where a lot of the chest pain comes from, when I don't have active pericarditis!

It's scary and so painful, I hope the abx will help you recover!

My LLMD said that I may have to use prednisone during treatment at some point and that it isn't as bad for you if you take it while on abx.

I have had a resting heart rate of 106-114 since starting abx. I feel like I am being tortured. The pain gets so bad sometimes that it makes me vomit. Not fun.

But the fact that it gets a bit better with ibuprofen and tylenol makes me know that this isn't just like pericarditis....they could never touch the pain before.

I am going to try and get in with my Cardiologist to make sure all of this pain isn't leading to an effusion.

It was most intense when I stared treatment of Doxy. It would cycle ever few weeks.

It returned again after stoping abx, when pulsing them.

My resting heart rate was never lower than 115, per heart monitor holster.

Going on a beta blocker has helped alot. I started with 2.5 mg of Bystlic once a day.

The type of doxy changed from tablet to capsule form. Wow- talk about herxing to the max.

Now, I am on 5 mg of Bystolic, which is considered the lowest does. My previous dose was cut in half to minimize blood pressure going too low, as its always low anyway.

The bystolic has helped. Resting heart rate is now around mid 70s.

I am able ( when I can ) to exercises and find heart rate is elevated and comes down as it used to prior to Lyme.

The chest and arm pain still occurs but not as much unless the other areas of pain override....

Hope you feel better!

Belle

I hope I feel better too! I have decent moments, but have pretty much been on the couch for the 7 days I have been on treatment.

I can't get in to see my cardiologist until August. But, I will have to ask him about the beta blockers. I am hoping that this herx stops soon.

So, when you would herx every so many weeks, would it be just as intense as the first herx you had? I almost don't want an answer to that. I cannot imagine going through this every month while in nursing school.

As long as I am not getting an effusion again, I'm not super worried anymore. The pain has been jumping all around my chest, shoulders, and back, so I am hoping that the pain means that the Bart is also in my muscles and that chest pain won't lead to an effusion like it has in the past.

Interesting about the herxing when your meds changed from tab to cap! My rifampin is cap and the zithro is tab.

Oh, and just so you know, I was diagnosed with pericarditis and was dealing with that for the last 2.5 years. They had tested me for Lyme when it started, but because the test was negative, my doctor dropped the issue. That has been my main battle until now, which is why this chest pain with herxing scares me so much.

Thanks for your reply Belle!

Could be the short term memory issue or the fact that pain and twitching jumps around that I can't keep up with keeping track.

I know stress makes it worse. I tend to be hard on myself and inwardly driven to be active. So that is mental stress on my part.

Laying down makes it worse cause everything is magnified.

I was considering medical school before I got this a yr ago.

Now I am considering microbiology.

Yet, i could not get up to make it to my dr. I was on couch till noon.

A few hours of real work will land me in bed for days, sometimes more than a week.

Do you have a primary dr that you could talk to about the beta blocker, so you dont have to wait for cardio?

I read somewhere that beta blockers help lessen the stress of the herx on the body and aids in recovery. I wish i would have booked marked the link.

Well, keep me posted!

Belle

Dont forget to detox!!!! Very important in flushing out system of die off

Belle, how long have you been getting treated now? I must say that it sounds terrible that it is still affecting you so badly now. I have gotten this far in nursing school and I really don't want to get delayed now.

toothfairy55, I have been detoxing, but it doesn't touch the pain. Luckily I have an old prescription for a stronger NSAID that I have been taking regularly and it helps a lot. It never worked before when I would have a flare of pericarditis and wasn't on abx.