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Bartonella herx or Babesia relapse? (or Lyme?)

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Posted 6/18/2018 9:03 PM (GMT 0)
I thought I was cured!

I began Bart specific treatment 4/20 after seeing my new LLMD with Minocycine and Rifampin plus supplements. Within 4 weeks I was feeling about 75-80% better, and up until a week ago (around week 7-8) I would say I was at 95% and planning to discontinue abx after I see the LLMD on 7/31. I had a very positive Igenix test for Bart at the end of March and at the time was treating Babesia Duncani based off an equivocal Igenix test result from the end of December but making no progress really (took Mepron for a month which gave me the worst 2 weeks of my life, followed by Coartem/Doxy/Zith for about 2 months). The March Igenix testing also was negative for the Babesia and negative for Lyme IgG and IgM. I switched LLMDs for several reasons, and the new LLMD recommended we go after the Bart despite not finishing up the 4 months of Babs treatment as I never really exhibited the hallmark signs of Babs and wasn't really progressing. This choice seemed to be extremely wise as I made tremendous strides with Rifampin/Mino and basically returned to my normal life. The color in my face returned, energy levels went up, rapid heart rate/POTS resolved, appetite returned, anxiety returned to near baseline levels, and life was basically back to normal! After having to take 2 days off after the 3rd week due to herx-like symptoms, I was cruising and taking 2 days off every 2 weeks at my LLMD's recommendation.

HOWEVER, starting last Monday 6/11, I noticed a slight uptick in fatigue, which seemed to slowly get worse each day and by the end of the week I was having to take a power nap at lunch. By Thursday, I was also noticing some increased anxiety and some jitteryness, which also seemed to slowly get worse day by day. Finally, Saturday night rolled around and as I was watching a movie at home with my wife I told her I felt like I was getting sick again. That brings me to today, when for the first time in 5-6 weeks I woke up feeling jittery/anxious, brain fog and a tinge of depression, noted that my rapid heart rate/POTS seemed to be back, and what to me feels like some Air hunger (which is a new symptom on its own) but could just be me being anxious.

I texted my LLMD who told me to stop antibiotics for a week, and if my symptoms improve resume to Rif/Mino, otherwise can start taking Artemsia for Babs (I asked if I should take abx for babs if it comes to that and he said let's wait and see how you feel first). I'm in such a state of despair that I actually contacted my former LLMD to make an appointment (soonest I could get in is 6/29) as I am dreading the thought of going to long without a definite course of action - even just taking a week off is making me nervous.

I responded so well to the brief break from the Bart protocol the first time that I can understand why my LLMD would want me to back off of abx for a bit and see what happens, but the 2 times I had near-fainting episodes were when I was off abx (first time was before I was diagnosed with anything, 2nd time was during my break between mepron and coartem). I want to believe that my load is significantly less after treating with abx since October 2017 and that I'll be fine taking a short break but I'm a worrier!

Anyways, my question is, does this sound like a Bart herx to yall? Or maybe I did have Babesia after all and it's come back? I desperately want it to be a Bart herx but it feels much different to me than what I experienced after the first 2-3 weeks of Bart treatment. Plus, I would think after 8 weeks of almost continuous improvement to near cured levels that I wouldn't experience such a drastic decline. FWIW, I have tested negative for Lyme via Igenix (most recently end of March) and the Quest western blot the last several times (most recently beginning of May). My LLDM also tested me via MDL Labs in New Jersey for Babesia Duncani and Microti via PCR (negative) during my last appointment a month ago... but that same test also had me negative for Bart (via both PCR and IgG/IgM).

This is why I created the other thread wondering if I could take Artemisinin or Artemesia with Rif/Mino as I felt like maybe Babs was crawling back. I asked my LLMD during the text exchange today this very question and he said again to wait and see how I respond to taking an ABX break first.
Posted 6/19/2018 1:18 AM (GMT 0)
From what I have heard the Babesia needs to be treated for at least 4 to 5 months and even longer

They say that many that remain ill is due to underlying Babesia infection.

I also think that they say that you have to keep treating for 2 to 3 months after no symptoms at all for these infections.

Even then many follow up some kind of maintenance treatment(ex: cryptolepis) to keep things at bay.

I'm not quite sure why your llmd would have you stop treatment when you are still having symptoms.

I am sorry you are dealing with all of this and I hope you get some relief soon.

Others should be along that may have more help and suggestions.

Take care
Posted 6/19/2018 1:28 AM (GMT 0)
Hi Solaris,

Sorry to hear about the concerning symptoms popping up. I was in a somewhat similar situation in this case but I extended my plan. Basically I started with abx, then started taking herbs/naturals, weaned off some of each, then all the abx, then tapered off of the herbs/naturals. It is pretty terrifying each step in the process but I definitely recommend it. Antibiotics are not fun to be on and can be expensive long term.

Also going cold turkey in of itself can cause your body to do some weird things not related to disease state. Listen to your body though and your physicians! Some stay on antibiotics for a long time and I get that-but I also feel very fortunate that I did get off of them when I did, I could have been one that stayed on them for years.

I see you were taking some supplements/proposal for taking artemesia. Are you taking any herbals or do you/your physician have plans for switching things up at all?

~beth
Posted 6/19/2018 1:47 AM (GMT 0)

opugirl said...
Hi Solaris,

Sorry to hear about the concerning symptoms popping up. I was in a somewhat similar situation in this case but I extended my plan. Basically I started with abx, then started taking herbs/naturals, weaned off some of each, then all the abx, then tapered off of the herbs/naturals. It is pretty terrifying each step in the process but I definitely recommend it. Antibiotics are not fun to be on and can be expensive long term.

Also going cold turkey in of itself can cause your body to do some weird things not related to disease state. Listen to your body though and your physicians! Some stay on antibiotics for a long time and I get that-but I also feel very fortunate that I did get off of them when I did, I could have been one that stayed on them for years.

I see you were taking some supplements/proposal for taking artemesia. Are you taking any herbals or do you/your physician have plans for switching things up at all?

~beth

My supplements are Magnesium (optimag neuro 200mg 1-2x day), NAC 900mg 2x day, curcumin 500mg 2x day, L theanine 100mg 2x day, 5-htp 1-2x/day, omega 3, and glutathione. The plan was to finish 3 months of rif/Mino and then do 4 months of artemisia just in case I did have babs and that it still wasn’t fully cleared. Depending on how the next few days go will determine if I resume Bart protocol or switch to Babs.
Posted 6/19/2018 1:56 AM (GMT 0)

goshawk said...
From what I have heard the Babesia needs to be treated for at least 4 to 5 months and even longer

They say that many that remain ill is due to underlying Babesia infection.

I also think that they say that you have to keep treating for 2 to 3 months after no symptoms at all for these infections.

Even then many follow up some kind of maintenance treatment(ex: cryptolepis) to keep things at bay.

I'm not quite sure why your llmd would have you stop treatment when you are still having symptoms.

I am sorry you are dealing with all of this and I hope you get some relief soon.

Others should be along that may have more help and suggestions.

Take care

I switched LLMDs around that time (for a variety of reasons) but the major issue was I was seeing minimal gains if any with the Babs treatment, plus i had a super positive Bart test come in along with a negative Babs. Treating Bart with rifampin and Mino is what made me return to near normal pretty rapidly so I don’t necessarily regret discontinuing the Babs treatment at the time.

I do plan on going with herbals for maintainenxe whenever I’m done with abx. I was planning on making a thread here on which ones to take (since my knowledge is limited) before this setback occurred
Posted 6/19/2018 4:56 AM (GMT 0)
Hi Solaris. Can you tell me a bit more about your the near-fainting episodes? What happened? I'm asking because I fainted and I have no history of fainting prior to this.
Posted 6/19/2018 11:39 AM (GMT 0)

Glascis said...
Hi Solaris. Can you tell me a bit more about your the near-fainting episodes? What happened? I'm asking because I fainted and I have no history of fainting prior to this.

Hi Glascis,

Back at the end of September I was at a clients house and while sitting and talking to them Out of nowhere felt like I going to pass out, I had a strange sensation in my head/neck area and felt my eyes start to roll back into my head. I didn’t go all the way out but it triggered a full blown panic attack at the time (I didn’t identify it as a panic attack until later). The ln while trying to drive myself home I felt the same sensation again and thought it was going to happen again so I put the car in park at a traffic light... but then the light suddenly turned green so I gunned it through and into the closest parking lot I could find and called my wife. My whole body was shaking and i was panicking - this lead me to go to the ER and spend the night in the hospital which triggered the whole cascade of events and tests which led me to find out I had Lyme.

The second time was end of February this year after being off babesia treatment for a 4-5 days. I was starting to feel good again and was at a clients house when I felt out of nowhere a sudden surge in anxiety as well as strange sensations in my head area. While driving home I began to suspect it may happen again so I stayed off the highway, and again while at a light I felt like I was going to blackout but managed to get myself into a nearby parking lot. I didn’t faint completely but I felt like I had To fight to stay awake for a few brief moments. Went to the ER again after that (waste of time, bloodwork and ct scan all normal) and resumed Babs treatment with coartem instead of Mepron (will never touch that stuff again) .

My best guess is that the undiagnosed Bartonella was the culprit and triggering the horrific panic/anxiety attack. I could be wrong, though. When I was on Doxy/Zith/Tindamax oct-Jan I had no issues with it, and up until this past week while on Mino/Rifampin I also had no issues, which makes this latest episode all the more perplexing to me. I didn’t have the feeling of blacking out but my body was shaking/quivering yesterday for quite a while. I’m going to try and see how it goes today but I’m scared out of my mind. I take clonazepam .5mg up to 4x daily (though I rarely go above taking 3 pills in a day) which helps.

I know it’s inflammation in my brain somewhere causing this, the question is , is it a Bart herx or return of Babs.
Posted 6/19/2018 3:01 PM (GMT 0)
Thanks Solaris. That sounds so frightening. I'm so glad you were able to get yourself to a parked state. I too fainted soon after I had parked my car at a client's site one morning and I can't help but think what if that had happened while I was driving?
Posted 6/19/2018 4:00 PM (GMT 0)

Glascis said...
Thanks Solaris. That sounds so frightening. I'm so glad you were able to get yourself to a parked state. I too fainted soon after I had parked my car at a client's site one morning and I can't help but think what if that had happened while I was driving?

That was the worst part of this 9 month journey I’ve been on other than the 1-2 weeks after taking Mepron where I couldn’t drive and thought I was going to faint all the time. The good news is that once you start feeling better (like I was the last month) that fear goes away.

Still holding out hope that this is just a Bart related herx/inflammatory response and that I’ll be back to fully functional in a few days.
Posted 6/22/2018 2:12 AM (GMT 0)
So to update on this thread:

I’ve made pretty good improvements since taking an abx break which makes me lean more towards a Bart flare/herx vs. Babs. Wednesday was a really good day - no real fatigue or increased anxiety but today I definitely experienced fatigue and increased anxiety. I can still feel that I need a few more days off at least to try and detox. The NAC, glutathione, Magnesium, Alka seltzer gold, and curcumin help, any other suggestions? I did purchase Jernigan’s Nuero antitox 2 cns/pns but haven’t tried it yet.
Posted 6/23/2018 1:31 PM (GMT 0)
So, I haven’t taken any abx since Monday morning, and Most of the issues have improved but the fatigue remains an issue. It isn’t constant but I still feel the need to take a brief nap most days and the last 2 nights I really felt exhausted by bed time which is unusual for me.

Kinda perplexed at the moment as to what may be the cause (Bart herx, Babs, or some other unknown entity). I am due to resume Mino/rifampin either tonight or tomorrow and at supposed to be in this combo until end of July. My LLmD said if I didn’t improve during this break I could switch to addressing a potential babesia issue.. but I have improved except for the fatigue. I made another thread with this issue, but can I take whole herb artemisia with my Bart meds?

Could it be the immune system kicking back up after not being on abx for the first time in many months? This wouldn’t explain the onset of fatigue prior to taking the break though.
Posted 6/23/2018 3:14 PM (GMT 0)
I think we make a mistake when we leave lyme in the background, and we blame bartonella and babesia for many symptoms, when they are probably related to lyme ... of those three infections, which is incurable at this days with what traditional medicine can offer us is lyme.

Dr. Phillips talks about this ... Bartonella infects endothelial cells, babesia red blood cells, and lyme infects any part of our body ...

Many people blame Babesia when they have heart problems. suzy cohen, says barbarities on his website, for example about babesia .... the fault of causing neuropathies, arrhythmias etc ... and the truth is that babesia will only affect the heart in extremely serious cases (of course, these cases will have severe hemolysis). I do not mean with this, that babesia can not affect the heart, but not before being reflected in a blood count .... heart failure by babesia is severe and the% mortality exceeds 40% ....

They also blame babesia for causing petechiae ... well, another myth. Petechiae are the result of thrombocytopenia, so how is it possible that someone has petechiae for babesia without thrombocytopenia? We are diverting our attention from the great annihilator (lyme) and putting our few forces into infections that are probably not the cause of our problems ...

I would be cured myself, and I would not see myself in a Borrelia tertiarism, if all my charlatans llmd had acted correctly, since September of last year, diverting my attention, not to prescribe correct doses of antibiotic for lyme, and blaming many of my symptoms of bart or babs ...

The difficulty to breathe, for example ... that is not a diagnosis of babesia, lyme and probably with more reason, causes that symptom, for many reasons ... from a severe dysautonomia, or inflammation of the sensitive nerves etc ... and in the hypothetical case that this breathing difficulty was caused by a respiratory distress syndrome (babesia), it would not be an intermittent symptom and you would probably be closer to death than to life ...

And sometimes we say babesia and bart are more difficult to treat than lyme and well..n maybe it's true because we can not treat lyme with malarone or zithromax... we are treating babs symptoms that are in fact lyme symptoms and we belive that we have an incurable babesia but we have an incurable lyme... and thats what happened to me.

Post Edited (OriolCarol) : 6/23/2018 9:34:38 AM (GMT-6)

Posted 6/23/2018 10:01 PM (GMT 0)
I believe I have eliminated my Lyme completely - I have tested negative via igenix (1x in March) and through multiple Western Blots over the past 3 months. I’m sure the possibility exists that Lyme could have returned but I hit it very hard early on after only being sick for less than 1-2 months. Doxy/Zith/tindamax for 3 months, Mepron/Zith/Doxy for 1 month, coartem/Zith/Mino for 2 months and now rifampin/Mino for 2 months.
Posted 6/23/2018 11:02 PM (GMT 0)

OriolCarol said...
I think we make a mistake when we leave lyme in the background, and we blame bartonella and babesia for many symptoms, when they are probably related to lyme ... of those three infections, which is incurable at this days with what traditional medicine can offer us is lyme.

Dr. Phillips talks about this ... Bartonella infects endothelial cells, babesia red blood cells, and lyme infects any part of our body ...

Many people blame Babesia when they have heart problems. suzy cohen, says barbarities on his website, for example about babesia .... the fault of causing neuropathies, arrhythmias etc ... and the truth is that babesia will only affect the heart in extremely serious cases (of course, these cases will have severe hemolysis). I do not mean with this, that babesia can not affect the heart, but not before being reflected in a blood count .... heart failure by babesia is severe and the% mortality exceeds 40% ....

They also blame babesia for causing petechiae ... well, another myth. Petechiae are the result of thrombocytopenia, so how is it possible that someone has petechiae for babesia without thrombocytopenia? We are diverting our attention from the great annihilator (lyme) and putting our few forces into infections that are probably not the cause of our problems ...

I would be cured myself, and I would not see myself in a Borrelia tertiarism, if all my charlatans llmd had acted correctly, since September of last year, diverting my attention, not to prescribe correct doses of antibiotic for lyme, and blaming many of my symptoms of bart or babs ...

The difficulty to breathe, for example ... that is not a diagnosis of babesia, lyme and probably with more reason, causes that symptom, for many reasons ... from a severe dysautonomia, or inflammation of the sensitive nerves etc ... and in the hypothetical case that this breathing difficulty was caused by a respiratory distress syndrome (babesia), it would not be an intermittent symptom and you would probably be closer to death than to life ...

And sometimes we say babesia and bart are more difficult to treat than lyme and well..n maybe it's true because we can not treat lyme with malarone or zithromax... we are treating babs symptoms that are in fact lyme symptoms and we belive that we have an incurable babesia but we have an incurable lyme... and thats what happened to me.

The thing is - when we treat Bart and Babs were not leaving Lyme in the background...we are treating Lyme with babesia or Bart.

For instance - I'm on babesia treatment now - mepron plus Ceftin, Mino and Bactrim.

My complaint with my first Lyme doc is he treated me for Lyme only for the first year. That was a waste of time IMO
Posted 6/23/2018 11:05 PM (GMT 0)

Solaris719 said...
I believe I have eliminated my Lyme completely - I have tested negative via igenix (1x in March) and through multiple Western Blots over the past 3 months. I’m sure the possibility exists that Lyme could have returned but I hit it very hard early on after only being sick for less than 1-2 months. Doxy/Zith/tindamax for 3 months, Mepron/Zith/Doxy for 1 month, coartem/Zith/Mino for 2 months and now rifampin/Mino for 2 months.

But we can't rely on testing to gauge progress/determine if we're in remission...
- you can test negative but that really doesn't ensure the Lyme is gone.
- you can test positive but you can be producing antibodies even after you're in remission.
Posted 6/24/2018 2:42 AM (GMT 0)

Girlie said...

Solaris719 said...
I believe I have eliminated my Lyme completely - I have tested negative via igenix (1x in March) and through multiple Western Blots over the past 3 months. I’m sure the possibility exists that Lyme could have returned but I hit it very hard early on after only being sick for less than 1-2 months. Doxy/Zith/tindamax for 3 months, Mepron/Zith/Doxy for 1 month, coartem/Zith/Mino for 2 months and now rifampin/Mino for 2 months.

But we can't rely on testing to gauge progress/determine if we're in remission...
- you can test negative but that really doesn't ensure the Lyme is gone.
- you can test positive but you can be producing antibodies even after you're in remission.

I get that. I use the tests combined with my symptoms to give my best educated guess.

On this 5 day abx break, most of symptoms improved except for the fatigue (50% improved). Resuming Mino/rif tonight but going to take only 300mg of rif for the first few days to see how it goes. I may ask my LLMD for bloodwork to rule out anemia as a source of the fatigue. Also going to ask if I can add artemisia to take along with the abx to cover myself a little In case Babs is somehow lurking around.
Posted 6/25/2018 11:22 PM (GMT 0)
So, I've been back on the ABX horse since Sat night, taking the Minocycline 100mg twice per day but keeping the Rifampin at 300mg once per day (taking at night) to ease back into things. I am finding it much more challenging than I expected, experiencing increased anxiety, jitteryness in my legs, some moodiness, and an occasional headache. After experiencing such wonderful recovery on this combo over the past 2 months before crashing last week, I'm wondering if I've reached the point where my body is done with ABX, or if it's Babs creeping back in, or if it's just Bart herxing. I texted my LLMD for advice this AM but haven't heard back yet. I did go get some bloodwork done to rule out anemia or anything else that a CBC might show. I'm hoping to keep pushing through (and I see my LLMD on Friday) but I'm also trying to be conscious of what my body is telling me. It's a very difficult position to be in after having tasted normalcy for the past few weeks.

Has anyone reached a point where their body just stopped tolerating a certain med? I'm wondering if I just need to shelve the Rifampin for a while. I'm thinking the odds are these symptoms are just as likely to be medication-related as they are disease related (the abx perhaps provoking an inflammatory response in my brain causing these symptoms).
Posted 6/26/2018 1:45 AM (GMT 0)
There are a lot of symptoms that overlap with these infections, but your symptoms seem more like Bart. I find that the best way to treat these infections is to go with the powerful botanicals. The issue with the antibiotics and antiparasitics is that these infections can adapt to them over time. This isn't the case with the Botanicals. Sida acuta and/or Cryptolepis are very effective for both Bart. and Bab. Also, Houttuynia is a powerful botanical against Bart. as well. Just be careful with the Sida acuta if you have any high blood pressure. Another reason why these infections reemerge is due to your body becoming weak. The antibiotics weaken your immune system, and it takes time for it to become strong again. Additionally, the antibiotics can cause other opportunistic infections to rise, such as Candida, Epstein Barr Virus, CMV, HHV-6, etc. All these other infections can keep your body too weak to fight them all off, even if you feel strong again. Also, other toxins, such as heavy metal toxicity, food sensitivities, allergies, etc. can all keep your immune system weak. Remember, we first should treat the body by detoxing from all the possibly toxins that it can accumulate. Then, reduce the inflammation. Next, build the immune system back up again (you do this with detoxing, reducing the inflammation while turning off the cytokine reactions), and by taking in the power nutrients. Lastly, when your body is ready, you can choose to go after the infections. When you do the first three, the body will start to fight these infections off itself. When you are strong enough, you can go after the infections.

Best wishes, and God Bless!
Posted 6/26/2018 10:39 PM (GMT 0)
Thank you. I am thinking it’s very close to time to switch to herbals as the Mino/rif seems to be making me worse now after giving me such tremendous recovery. It feels like my brain is swelling when I take the stuff now. I see my LLMD on Friday to determine what’s next. I’ll prob post a new thread for herbals soon.
Posted 6/26/2018 11:18 PM (GMT 0)

Justin01 said...
The antibiotics weaken your immune system, and it takes time for it to become strong again. Additionally, the antibiotics can cause other opportunistic infections to rise, such as Candida, Epstein Barr Virus, CMV, HHV-6, etc. All these other infections can keep your body too weak to fight them all off, even if you feel strong again. Also, other toxins, such as heavy metal toxicity, food sensitivities, allergies, etc. can all keep your immune system weak. Remember, we first should treat the body by detoxing from all the possibly toxins that it can accumulate. Then, reduce the inflammation. Next, build the immune system back up again (you do this with detoxing, reducing the inflammation while turning off the cytokine reactions), and by taking in the power nutrients. Lastly, when your body is ready, you can choose to go after the infections. When you do the first three, the body will start to fight these infections off itself. When you are strong enough, you can go after the infections.

Best wishes, and God Bless!


Justin - Where did you read that the antibiotics can cause EBV, CMV, HHV-6?
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