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Posted 12/28/2018 7:14 PM (GMT 0)
Hi everyone,

So for the past month I have switched over to rifabutin from rifampin for my bart treatment regimen and have been suffering massive herxes that caused me to take breaks and also landed me in the ER and hospitalized at one point. All though I'm tolerating it a bit better now, when I was hospitalized (roughly a little over a month ago for a day), the ER doctor told me that I was in danger of sepsis as I had a fever (around 100 deg F), tachycardia (110-130 bpm for the entire night), overall body ache/pain, extreme weakness, chills, and shortness of breath. Labwork at the ER that night showed my lactic acid levels were high and based on the other clinical evidence, they hospitalized me overnight on watch for mild sepsis. Thankfully, following that night my condition stabilized somewhat as I took a abx break the next week or so.

My doctor says it was a massive herx to the rifabutin and I'm thinking so too. Fast forward to these last couple days, I've been doing much better this time after re-inserting rifabutin to my regimen again about 8-9 days ago but since yesterday I've been starting to feel a little terrible again. Except this time, I don't have the fever or anywhere near the same level of tachycardia but everything else. Also, another thing that has been appearing on and off the past couple months in my bi-weekly safety labs (CBC/CMP) is what my doctor describes as a "left shift" in my bloodwork. This is a phenomena where immature white blood cells (granulocytes, metamyelocytes, promyelocytes) are found in your peripheral blood. Usually, it indicates bacterial infection but it's interesting because it only seems to start showing once I introduce rifabutin back into my system. At first it freaked me out a lot as googling the term led to a lot of leukemia references with left shift but that is only with other evidence in my CBC such as hemoglobin, RBC, platelet counts low. Thankfully, everything else shows normal in my CBC but she rarely sees a left shift occur in her bart patients so cannot say for sure it cannot be due to something else.

All this to say, has anyone else experienced any of these? I've been taking my herxes pretty calmly since I started treatment 6 months ago but now with the left shift uncertainty in my CBC and my sepsis scare back in November, I am a little anxious with any significant flare of symptoms at this point.

Any advice/comments would be appreciated.

Thanks!
Posted 12/28/2018 7:55 PM (GMT 0)
Yep sounds bout right ...tachy check , fever check , freaked out immune check... a) yes when u kill that fast the osp of the bacteria is so toxic and wasnt visable to wbc now is that "auto immune sx pop up ....so took from buhner and reduced cytokine storm and inflammation by any and all means. And gave the immune something else to do. The thrombocytopenia was caused by bart in the marrow and will take time to come back . Support liver not using milk thistle and detox like a madperson. Sweat ,pee poo it out ...rochepin is a amazing anti-inflammatory and may put bart on pause says burrascano....i belive pulsing is ok for intercellular organisms ..rif is effective on cpn all forms do u have that ?

Post Edited (bluelyme) : 12/28/2018 12:58:15 PM (GMT-7)

Posted 12/28/2018 8:09 PM (GMT 0)

bluelyme said...
Yep sounds bout right ...tachy check , fever check , freaked out immune check... a) yes when u kill that fast the osp of the bacteria is so toxic and wasnt visable to wbc now is that "auto immune sx pop up ....so took from buhner and reduced cytokine storm and inflammation by any and all means. And gave the immune something else to do. The thrombocytopenia was caused by bart in the marrow and will take time to come back . Support liver not using milk thistle and detox like a madperson. Sweat ,pee poo it out ...rochepin is a amazing anti-inflammatory and may put bart on pause says burrascano....i belive pulsing is ok for intercellular organisms ..rif is effective on cpn all forms do u have that ?

Hmm sounds interesting. But I don't have thrombocytopenia? My platelet counts are normal. So are you saying milk thistle is not helpful for liver detox? My liver ALT/AST levels have been slightly high in the initial months of my treatment but have stabilized since and I think the milk thistle has played a part in that. I have been using IR sauna twice a week now. By cpn do you mean chlamydia pneumonia? I don't have it.
Posted 12/29/2018 6:13 AM (GMT 0)

xpeetzax said...
Hi everyone,

So for the past month I have switched over to rifabutin from rifampin for my bart treatment regimen and have been suffering massive herxes that caused me to take breaks and also landed me in the ER and hospitalized at one point. All though I'm tolerating it a bit better now, when I was hospitalized (roughly a little over a month ago for a day), the ER doctor told me that I was in danger of sepsis as I had a fever (around 100 deg F), tachycardia (110-130 bpm for the entire night), overall body ache/pain, extreme weakness, chills, and shortness of breath. Labwork at the ER that night showed my lactic acid levels were high and based on the other clinical evidence, they hospitalized me overnight on watch for mild sepsis. Thankfully, following that night my condition stabilized somewhat as I took a abx break the next week or so.

My doctor says it was a massive herx to the rifabutin and I'm thinking so too. Fast forward to these last couple days, I've been doing much better this time after re-inserting rifabutin to my regimen again about 8-9 days ago but since yesterday I've been starting to feel a little terrible again. Except this time, I don't have the fever or anywhere near the same level of tachycardia but everything else. Also, another thing that has been appearing on and off the past couple months in my bi-weekly safety labs (CBC/CMP) is what my doctor describes as a "left shift" in my bloodwork. This is a phenomena where immature white blood cells (granulocytes, metamyelocytes, promyelocytes) are found in your peripheral blood. Usually, it indicates bacterial infection but it's interesting because it only seems to start showing once I introduce rifabutin back into my system. At first it freaked me out a lot as googling the term led to a lot of leukemia references with left shift but that is only with other evidence in my CBC such as hemoglobin, RBC, platelet counts low. Thankfully, everything else shows normal in my CBC but she rarely sees a left shift occur in her bart patients so cannot say for sure it cannot be due to something else.

All this to say, has anyone else experienced any of these? I've been taking my herxes pretty calmly since I started treatment 6 months ago but now with the left shift uncertainty in my CBC and my sepsis scare back in November, I am a little anxious with any significant flare of symptoms at this point.

Any advice/comments would be appreciated.

Thanks!


OMG - this happened to you too? This is so similar to my nightmare experience on Cycle 2 of persister protocol.
I came very close to going to the ER.
Background; had treated Bartonella with Rifampin and mino for over a year (couple years ago)
Then went to the J clinic and was first prescribed Babesia meds for a few months.
Then I went on the persister protocol that has me taking Rifabutin.
Cycle 1 was tough but made it through - except my Kidney function tests weren't in range.
Cycle 2 was tougher, on the last day (Friday) I went down hill fast. Later in the evening, I was watching tv and I started shivering....and then my arms started jerking and my whole body was hurting... I decided to check my temperature and it was very high - i think it was 103 at one point. Then I checked my heart rate...and it was high.
My husband stayed home from work the next day as my symptoms continued through the night...I couldn't get any sleep. That morning I had an epsom salt bath...and then got about an hour of sleep.
My fever, body pain, and high heart rate continued until the late afternoon.
I was scared. I have never had a fever from lyme/co's treatment. And the long-lasting high heart rate was also a first.

Cycle 3 and 4 I cut back on the dapsone and daraprim, but continued with the same dosing of Rifabutin and although it hit my hard I didn't have a repeat of the extreme symptoms.

I originally thought it was D and D....but now I'm thinking it is the Rifabutin.
Dr. J thinks it was possibly a mycoplasma herx. (I think that's the infection he said)


What part of the blood test does it show "immature white blood cells (granulocytes, metamyelocytes, promyelocytes) are found in your peripheral blood. "

Can you see it on your lab CBC lab work? Or did your LLMD run another test?
Posted 12/29/2018 2:59 PM (GMT 0)
I must be a drug mule, as i didn't experience any of these harsh effects after 7 months of daily dosing, twice a day, of rifabutin.

the only behavior i observed was low WBC and low platelets, they bounced above and below the reference range. and increasing TSH (not sure if that was the rifabutin or minocycline.)
Posted 12/29/2018 3:40 PM (GMT 0)

Girlie said...

OMG - this happened to you too? This is so similar to my nightmare experience on Cycle 2 of persister protocol.
I came very close to going to the ER.
Background; had treated Bartonella with Rifampin and mino for over a year (couple years ago)
Then went to the J clinic and was first prescribed Babesia meds for a few months.
Then I went on the persister protocol that has me taking Rifabutin.
Cycle 1 was tough but made it through - except my Kidney function tests weren't in range.
Cycle 2 was tougher, on the last day (Friday) I went down hill fast. Later in the evening, I was watching tv and I started shivering....and then my arms started jerking and my whole body was hurting... I decided to check my temperature and it was very high - i think it was 103 at one point. Then I checked my heart rate...and it was high.
My husband stayed home from work the next day as my symptoms continued through the night...I couldn't get any sleep. That morning I had an epsom salt bath...and then got about an hour of sleep.
My fever, body pain, and high heart rate continued until the late afternoon.
I was scared. I have never had a fever from lyme/co's treatment. And the long-lasting high heart rate was also a first.

Cycle 3 and 4 I cut back on the dapsone and daraprim, but continued with the same dosing of Rifabutin and although it hit my hard I didn't have a repeat of the extreme symptoms.

I originally thought it was D and D....but now I'm thinking it is the Rifabutin.
Dr. J thinks it was possibly a mycoplasma herx. (I think that's the infection he said)


What part of the blood test does it show "immature white blood cells (granulocytes, metamyelocytes, promyelocytes) are found in your peripheral blood. "

Can you see it on your lab CBC lab work? Or did your LLMD run another test?

It may have been heading to sepsis then...from what I researched it progresses from SIRS => mild sepsis => moderate to severe sepsis => septic shock (40-50% mortality rate).
Sepsis is considered a serious/potentially life threatening health condition and if you show signs of it, next time, you should go in immediately. One of the tell-tale signs though is unrelenting high fever and tachycardia. Then it gets to low blood pressure...then your organs start failing.

As for the CBC, your doctor should order you a CBC with differential 6399 (order code for LabCorp). Or I think in general it's just called CBC /w differential/platelet. Should give you a count of different types of WBCs (Neutrophils, Monocytes, Lymphocytes, Eos, Basos, and Immature cells). Again immature cells shouldn't be in your periperhal blood. If it is, then labcorp or quest will flag them on their CBC and now I'm starting to understand it is a marker (at least for me) that I am herxing/body is fighting the infection. My LLMD tells me that it's not something she sees too often so I wouldn't be surprised if it doesn't happen for you.

Good to hear though that each cycle seems to be getting better!
Posted 12/29/2018 5:51 PM (GMT 0)
"platelet counts low. " must have mis read ....sounds like youre doing better.
Sepsis is a body wide infection. ..we all qualify that definition . There was a good discussion on lnet
Posted 12/29/2018 6:38 PM (GMT 0)

bluelyme said...
"platelet counts low. " must have mis read ....sounds like youre doing better.
Sepsis is a body wide infection. ..we all qualify that definition . There was a good discussion on lnet

We don’t all qualify as having Sepsis - because we have lyme and co’s.
If it gets to the point of having high heart rate, high temp, and bad pain for many hours - then it can be an emergency.
Posted 12/29/2018 6:45 PM (GMT 0)
X - I have a CBC ( I’m in Canada) done every 4 weeks but I don’t see Immature cells listed.
I do get a breakdown of my WBC count.

Does it just show up when you have them - and not when you don’t?

I also don’t have high total wbc count - in fact it’s often below range.
Posted 12/29/2018 6:50 PM (GMT 0)
So what I understand about Sepsis - is it’s often an untreated infection that causes it.

So how can it happen to us when we’ve been killing off the bacteria - for months... to years?
Posted 12/29/2018 7:04 PM (GMT 0)
Hardly any sleep last night and fever today - dang it!

X - do you have a fever now?
Posted 12/29/2018 8:20 PM (GMT 0)
Girlie, Yes, you are right. if you don't have any immature cells circulating then it will not show up on the CBC.

Hmm I heard any infection can cause sepsis. I'm thinking somehow the rifabutin is provoking my body's immune system to over-respond hence almost causing sepsis, and it my case, a left-shift. My LLMD says this is all consistent with a herx.

Also, no I have not had an official fever since I was hospitalized although I came close (felt feverish) couple of times afterwards after resuming rifabutin. Currently I'm low-grade herxing but not anywhere near as bad as I was at that time.
Posted 12/29/2018 8:29 PM (GMT 0)

xpeetzax said...
Girlie, Yes, you are right. if you don't have any immature cells circulating then it will not show up on the CBC.

Hmm I heard any infection can cause sepsis. I'm thinking somehow the rifabutin is provoking my body's immune system to over-respond hence almost causing sepsis, and it my case, a left-shift. My LLMD says this is all consistent with a herx.

Also, no I have not had an official fever since I was hospitalized although I came close (felt feverish) couple of times afterwards after resuming rifabutin. Currently I'm low-grade herxing but not anywhere near as bad as I was at that time.

Okay - so it doesn’t show it listed with a 0.0 after it.

Yes I would think that any infection could cause it - but I had more infection in my blood 4 years ago - so wondering how/why it would happen when now when I’ve lowered the bacterial load significantly.

Dr J thinks I was herxing too.
Last time it happened I postponed my 2nd week meds by a week.
He wants me to take them on Monday - after just having Sat and Sunday off but I don’t think I can do it with the way I feel now.
Posted 12/29/2018 8:31 PM (GMT 0)

sierraDon said...
I must be a drug mule, as i didn't experience any of these harsh effects after 7 months of daily dosing, twice a day, of rifabutin.

the only behavior i observed was low WBC and low platelets, they bounced above and below the reference range. and increasing TSH (not sure if that was the rifabutin or minocycline.)

I am usually tolerating the abx pretty well.. but I wonder about the dosage being the same for a 130 lb woman vs a 200 lb man. Not sure why I should be able to handle the same dose.
Posted 12/30/2018 12:24 AM (GMT 0)
A hospitals jobs is to triage trauma and stop death...so whatever icd code they used .... a bad herx can feel like death and there is no icd10 code for that ..."Sepsis occurs when chemicals released in the bloodstream to fight an infection trigger inflammation throughout the body. This can cause a cascade of changes that damage multiple organ systems, leading them to fail, sometimes even resulting in death." So reduce inflammation during this herx ....i had this on exp on bactrim ,bvt and zhang ...its why dr martz recommended pulsing 2g roceph instead of 4 with als lyme persons....one wants to kill enough to clear nerves but not so much that the toxins from dead bacteria kill neighboring cells. This is what caused my vasculitis ,endothelial lining inflammed with sulfa and dead bart bodies ...iv c and curcumin and other th1 th2 regulation helped[code]

Post Edited (bluelyme) : 12/29/2018 5:29:33 PM (GMT-7)

Posted 12/30/2018 2:19 PM (GMT 0)

Girlie said...

sierraDon said...
I must be a drug mule, as i didn't experience any of these harsh effects after 7 months of daily dosing, twice a day, of rifabutin.

the only behavior i observed was low WBC and low platelets, they bounced above and below the reference range. and increasing TSH (not sure if that was the rifabutin or minocycline.)

I am usually tolerating the abx pretty well.. but I wonder about the dosage being the same for a 130 lb woman vs a 200 lb man. Not sure why I should be able to handle the same dose.

not sure, i weighed around 158-160lbs when taking this, my usually weight is around 170-172 pre-lyme. at my lowest it was 148-150lbs.

it seems like different people just tolerate it differently, this whole journey i haven't really herxed much, and a lot the meds i have taken rifabutin, mepron, etc caused a lot of people herxing, so i think i am just one of those people.

it maybe detox methods too, i take high doses (4 x 600mg) of NAC daily, 900mg of Milk Thistle, 1000-2000mg Vitamin C, ACV and garlic intermittently, VSL3/Jarrow sach.b.

is it possible the pre-sepsis condition was triggered by something else? for example, i have a congenital ureter stricture, when/if that goes bad it could cause urine backflow into my kidney causing infection/sepsis, i have to have this condition monitored. just wonder if the pre-sepsis condition is caused by something else other than the infections
Posted 12/30/2018 3:19 PM (GMT 0)

sierraDon said...


is it possible the pre-sepsis condition was triggered by something else? for example, i have a congenital ureter stricture, when/if that goes bad it could cause urine backflow into my kidney causing infection/sepsis, i have to have this condition monitored. just wonder if the pre-sepsis condition is caused by something else other than the infections

My LLMD told me it could also have been an acute infection at the time... but us some of us lymies have not been "regular sick" in awhile?
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