Help me to process my latest setback that landed me in the ER

Hey everyone,

So I am now on week 19 of my bartonella/babesia treatment plan and have switched from rifampin to rifabutin 2 weeks ago and gradually increasing dosage per week...Seemed like I was making steady progress and some major strides although I was herxing couple days out of the week on and off but nothing too out of the ordinary. Then BAM I get hit by a major herx (?) episode last night where I had extreme chills followed by fever, body aches everywhere, tachycardia (more than usual), palpitations, and air hunger all coming with a vengeance to the point where I am thinking I am having a cardiac arrest. So I gave in and made the call to 911 and was taken to the ER. Symptoms haven't been this bad since back in may way before I started any treatment. I haven't made a trip to ER in the last 5 months after going there almost monthly for my first 5 months of the disease and every time I would get rejected because my typical aabwork (CBC/cmp/ekg/etc) look fine and sent home and feeling worse often times the next day. This time though..it was different. The doctor actually found something in my bloodwork that was of concern to him--my lactic acid levels came back elevated...and my heart rate was very high and wouldn't drop even after a couple hours of my arrival. Lastly, my temperature was in the low-grade fever range (100.7 deg F). The admitted me to the hospital to stay overnight to monitor me as they were suspicious of sepsis. I was taken aback and a bit scared as sepsis can be a life-threatening complication...Has anyone else heard of or experienced sepsis with lyme/bart/babs? Anyway, they immediately put me on several IVs and hooked up a heart rate monitor overnight..drew a whole bunch more blood, ecg, several pain meds, beta blockers, and they were able to calm me down and my heart rate and the next morning my bloodwork came back normal so, as usual, they sent me back home saying maybe I was just dehydrated. Now I am back home, tired, exhausted, and confused what just happened...did my body just go through a massive herx? Or could it have been a mild sepsis (septic shock)? And this elevation of symptoms also scared me and causing me to question whether it is the rifabutin that caused this or the fact that I did over exert myself a bit that day. Another theory I have is that I was also near some people who were coming down with a cold/flu so maybe I could've caught something acute from them?

It's just so discouraging every time I have a major setback like this...also costs me a lot of $$ every time I have to give in and go to ER...this time actually being hospitalized for a night.

Let me know your thoughts. Suggestions welcome. Thank you!

I had a bad episode one evening when I had finished a 5 day course of Persister meds. My heart was racing for several hours , I had a fever that I think peaked at 103.
Full body pain and a seizure like reaction.

I was concerned about sepsis.

My husband took the next day off work because it was so severe.

Good that you went to the ER and were checked out.

Scary isn’t it?

How are you feeling now?

It was several days before I was back to baseline.

Dang, I'm so sorry you had to go through that. It's still probably good that you went since they did help stabilize your body. May have been a major herx also potentially exacerbated by cold/flu... is your llmd having you take a break from meds for a bit? After something like this may be a good idea to lay off abx, let body recuperate/stabilize before getting after the infections again.

I don't know much about sepsis and how it is confirmed, if they were unable to confirm it via labs does that rule it out?

I hope you are feeling better today.

xpeetzax said...
Thanks everyone for your responses and concern. I am back home and feeling significantly better than Sunday night..although I am quite fatigued and nowhere near where I was before my sudden episode so far, I'm thankful that I'm not still hospitalized and made a recovery relatively quickly.

Just followed up with my LLMD and she is telling me it's a herx to the rifabutin. She believes that switching from Rifampin to Rifabutin caused a drastic shift in die-off and perhaps too much than I can handle. SO, the plan is to re-introduce some rifampin in the days I am not taking rifabutin and slow down the dosage of rifabutin. She also wants me to pulse artemisinin 10 days on and off as I was just taking that every day. Going to also introduce intranasal glutathione spray for additional detox.

All in all, she is not concerned that this was a setback at all but actually more on the positive side where this is a SIGN that progress is being made. Although the herx was a bit more intense than anticipated.

I live to fight another day my fellow lymies!

Good to hear your significantly better...

Thank you for posting about Rifabutin vs Rifampin.
Not only am I taking dapsone and daraprim - I also take Rifabutin with it.

And I had previously only been on Rifampin a couple years ago...
I’ve always wondered about Rifabutin - had read/heard it was the choice with some llmd’s - but I didn’t really consider that was contributing the my hellish herx.

xpeetzax, sorry you had to go through that:

2 things about your post stick out to me:

1) hydration..this one I think many people overlook, neglect or forget to drink enough water
2) a virus (cold/flu..seasonal) can be an unwelcome part of the lyme n co entourage...

so here i go, drinking my water now, and just barely getting through a very nasty almost 2-week long cold/flu virus thing!

I know the desperate dilemma of going to ER, and then getting dismissed,...and then the bill!

I can't afford to be sick, yet I needed 2-3 days of 12 hour nights' sleep just to recover this week, and I'm so far behind of what I set out to do...

This illness is so crazy, even if one were to have plenty of time and money to spend battling, herxing, treating and recovering, I imagine it would still be quite a harrowing challenge...and those heavy drugs, even with LLMD guidance which it sounds like you have...are truly a difficult experience.

and imagine that..

lots of folks are working and muscling through the best they can, with time and money in shorter supply, myself included...I've had a few of those "it feels like I'm really about to die" days, with air hunger and aches, drove myself to ER, scared

now these days, because of paper thin finances, and already in the hole, I dread having to peel back that onion again, with the busting of biofilms and killing the bacterias, it won't be easy.

I know: How do you process that shock of ER doctors not really knowing what to do? about several Tick Borne infection complexes that cause these alarming supposedly "phantom" heart symptoms, respiratory/body air hunger? There isn't a protocol (other than Buhner), I mean to deal with just the basics of how these present medically in ER, is there? Most of us here are on our own to try to piece together a treatment plan.

I wonder if they gave you a benzodiazepine (yes i know people get addicted to them) would that at least be some temporary relief? But the problem of getting oxygen is still there, some drugs prescribed for hypoxia (lack of oxygen) may also help.

And I dunno, maybe Doctors and their insurance co.s know that treatment is often long and expensive...

xpeetzax said...

Girlie said...
I’m also curious, sebreg - how its determined you have sepsis.
I think high fever is one.
I did google it a couple months ago when I almost went to the ER.

Trying to remember if high heart rate is part of the diagnosis.

High heart rate is definitely one. The doctor told me if it doesn't fall, the risk of sepsis is higher and one of the main reasons they admitted me to the hospital along with the lactic acid levels being high.

How long did you herx for after starting rifabutin? What dosage did you start with?

My heart rate was high for several hours - It started late evening...and it wasn't until afternoon next day that it resolved (high heart rate).

Symptoms include:

a fever above 101ºF (38ºC) or a temperature below 96.8ºF (36ºC)
heart rate higher than 90 beats per minute
breathing rate higher than 20 breaths per minute
probable or confirmed infection
You must have two of these symptoms before a doctor can diagnose sepsis.

Severe sepsis occurs when there’s organ failure. You must have one or more of the following signs to be diagnosed with severe sepsis:

patches of discolored skin
decreased urination
changes in mental ability
low platelet (blood clotting cells) count
problems breathing
abnormal heart functions
chills due to fall in body temperature
unconsciousness
extreme weakness

https://www.healthline.com/health/sepsis#symptoms[

xpeetzax said...


How long did you herx for after starting rifabutin? What dosage did you start with?

My protocol is in Cycles.
Each cycle lasts 4 weeks (Two weeks of the 4 weeks I take Rifabutin)

It was Cycle 2 after finishing the last dosage of the first week of the Rifabutin. So, 5 weeks after starting the Rifabutin...but out of those 5 weeks, I had only taken it for 3 weeks

(I know it's confusing)

Basically it was 13 days of Rifabutin spread over 5 weeks. BUT, I do think the Dapsone and Daraprim contributed to it.

xpeetzax said...

Girlie said...

xpeetzax said...


How long did you herx for after starting rifabutin? What dosage did you start with?

My protocol is in Cycles.
Each cycle lasts 4 weeks (Two weeks of the 4 weeks I take Rifabutin)

It was Cycle 2 after finishing the last dosage of the first week of the Rifabutin. So, 5 weeks after starting the Rifabutin...but out of those 5 weeks, I had only taken it for 3 weeks

(I know it's confusing)

Basically it was 13 days of Rifabutin spread over 5 weeks. BUT, I do think the Dapsone and Daraprim contributed to it.

I see..how are you feeling now? Are you still on the same protocol?

It took a full week for me to recover...but now I think my baseline has improved.... I'm currently on Cycle 4...so will see how I feel once that's over with.

4 Days isn't a very long time to recover...mine took a full week....

Here’s a site with a list of detox methods.

https://www.tiredoflyme.com/detox-methods.html