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Posted 4/12/2019 2:29 PM (GMT -5)
I’m looking for advice on the best treatment for Babesia for someone who can’t take abx. I completeld (aggressive) treatment for Lyme, Bart., and Myco in 2017. I was stable (all blood results normal, aside from chronic low-grade inflammation and a slightly compromised immune system) except from POTS, CFS, and fibromyalgia until about six weeks ago. I went into a massive flare with textbook Babesia symptoms. My treatment team believes it’s Babesia which, after some research, I’m certain I contracted in early childhood, based on telltale symptoms. I cannot take abx—they are not an option for my body right now. I’m currently on Artemisinin and have Sida Plus. I’m unsure whether to request prescription anti-malaria meds to go with it. I’ve read Buhner and Horowitz, but am still unsure which meds are best or how long to expect to be on treatment. My body is still very damaged and fragile, and cannot handle large doses of “toxic” meds (although I’m just about handling the Art.), so I’m hoping there are still options available to me. I’m also unclear what supplements are best, specifically whether l-arginine is safe for POTS. TYIA.
Posted 4/12/2019 2:46 PM (GMT -5)
Welcome to our community!

So you can’t take abx but you think antimalarials would be okay?

Mepron is a common med for Babesia - but it should be paired with an antibiotic so that won’t work for you.

Maybe consider adding the herb Cryptolepis for Babs.

You mentioned after your treatment you still had chronic fatigue, fibromyalgia, and POTS. It sounds to me like you needed more treatment at the time. What was used to determine it was time to stop?

Except for POTS (maybe) - the fatigue and muscle pain should resolve with treatment.
(I say not maybe POTS because Dr Horowitz has written about it still lingering after treatment... and so far for me it’s one of my last symptom that still hasn’t resolved. POTS is a dysfunction of the ANS and seems difficult to resolve.)
Posted 4/12/2019 2:58 PM (GMT -5)
Thank you Girlie, for the welcome and info😊. That’s very helpful. I always thought the infection wasn’t resolved, because the pain and fatigue has been constant and debilitating—but my treatment team (Lyme-literate—they all follow Horowitz) felt the symptoms were due to damage, versus infection, and I was told I had to learn to live with them (which was very frustrating, because I can’t function). I’m not sure why it was decided to stop all treatment, to be honest. I think once my body started reacting badly to every abx, one after the other, everything was just pulled back, and I only did Art. pulsing. This never felt right, however. It felt like I fell off theit radar a bit, to be honest.

I was wondering if Malarone or Palanquin would be a good option, since I can’t handle abx of any kind—but I really don’t know anything. I’m not sure I could handle anti-malaria meds, if I’m honest, but I seemed okay with them last time (I believe I was on Palanquin and Malarone, but the latter may have too much, now that I think about it; I was on so many at once, and was rotated through so many, that it’s a bit of a blur now). There’s not much detailed info on Babesia that I can find so far (unlike all the other infections I’ve dealt with). I’m very glad I found this forum! My MD has been away (my LLND put me on Art. and Sida Plus), but I’m seeing her next week, which is why I’m hoping to learn more before then. I’d like to be part of the decision-making this round of treatment.

Post Edited (Cecile) : 4/12/2019 2:12:17 PM (GMT-6)

Posted 4/12/2019 4:15 PM (GMT -5)

Cecile said...
Thank you Girlie, for the welcome and info😊. That’s very helpful. I always thought the infection wasn’t resolved, because the pain and fatigue has been constant and debilitating—but my treatment team (Lyme-literate—they all follow Horowitz) felt the symptoms were due to damage, versus infection, and I was told I had to learn to live with them (which was very frustrating, because I can’t function). I’m not sure why it was decided to stop all treatment, to be honest. I think once my body started reacting badly to every abx, one after the other, everything was just pulled back, and I only did Art. pulsing. This never felt right, however. It felt like I fell off theit radar a bit, to be honest.

I was wondering if Malarone or Palanquin would be a good option, since I can’t handle abx of any kind—but I really don’t know anything. I’m not sure I could handle anti-malaria meds, if I’m honest, but I seemed okay with them last time (I believe I was on Palanquin and Malarone, but the latter may have too much, now that I think about it; I was on so many at once, and was rotated through so many, that it’s a bit of a blur now). There’s not much detailed info on Babesia that I can find so far (unlike all the other infections I’ve dealt with). I’m very glad I found this forum! My MD has been away (my LLND put me on Art. and Sida Plus), but I’m seeing her next week, which is why I’m hoping to learn more before then. I’d like to be part of the decision-making this round of treatment.

May I ask what you used to treat Bartonella?
And how was it determined that what you’re left with was damage? Just their “educated” guess?

Also how long did you treat lyme and Bart with antibiotics?

Do you mean Plaquenil?
You could try it with Malarone or Mepron if there isn’t any contraindications.
Posted 4/12/2019 4:30 PM (GMT -5)
Yes, I meant Plaquenil...my brain is really not working! 😂 I’m not entirely sure why it was decided I didn’t need more treatment, but yes, my understanding is that it was an educated guess. I suspect it was half because the symptoms the doctors felt were significant improved, and half because I started getting bad reactions to all medication. It started as a break from meds, and then just stuck. When I complained about the pain and exhaustion, they said the symptoms were something I had to accept and live with. I just accepted that.

I was on so many meds that I cannot recall them all now. It included multiple, high-dose abx, antivirals, and antimalarials. I was on them for just under a year. They were based on Horowitz’s protocols for Lyme and Bart (I was treated for Myco too). I was moved to Art. and herbals when the prescription meds started to cause very bad reactions. These ended when I stopped having bad Bart. symptoms (I was very symptomatic when I started treatment), which was about three months.

Thank you for the replies!
Posted 4/12/2019 4:46 PM (GMT -5)
Did you treat lyme and Bartonella for only 3 months total?
Posted 4/12/2019 4:49 PM (GMT -5)
They were treated (along with Myco) for just under a year. That was with prescription meds. I did then three months of herbals, which I believe were focused on the Bart.
Posted 4/12/2019 5:07 PM (GMT -5)
Have you ever sought out another LLMD to evaluate you?

The herb Cryptolepis is a good one to try for Babesia - combined with Sida acuta and I believe the third one Buhner recommends with those two is Bidens Pilosa.
Posted 4/12/2019 5:16 PM (GMT -5)
Thank you again! I have Sida Plus (based on Buhner) and Cryptolesis, and can order Biden’s Pilosa. How do you know when it’s okay to stop? I no longer have the bad sweats/chills, terrible headache, air hunger (which is really scary for someone with asthma!), and bad head pressure. And the red spots/splotches seem to have abated. It’s mostly now profound exhaustion, muscle and joint pain, inflammation, mild head and eye pressure/pain, and palpitations (worse than the usual POTS ones).
Posted 4/12/2019 5:40 PM (GMT -5)
“It’s mostly now profound exhaustion, muscle and joint pain, inflammation, mild head and eye pressure/pain, and palpitations (worse than the usual POTS ones).”


Well it’s really difficult to know what infection is causing the symptoms - there’s a lot of overlap.

I believe for me the head pressure was Babesia as it greatly worsened when I took Mepron. It felt like my head was going to explode and my eyes were going to pop out of my head.

My POTS symptoms are only a rise in heart rate from sitting to standing - not sure if it’s affecting my blood pressure too.
It is proving to be very stubborn.

Btw - what Pharma did you use to treat bart?

For chronic Lyme I think you want to stop treatment when you are symptom free or close to symptom free - there may be a couple of symptoms that may need time to heal - but I wouldn’t stop if I had symptoms and hadn’t treated all three B’s.

What kind of reaction did you have to the abx? Was it stomach/ intestinal issues?
Posted 4/12/2019 6:07 PM (GMT -5)
I was treated for Bart and Lyme the entire time I was on prescription meds, so just short of a year. I can’t recall them (I tried to forgot once that treatment ended), but it was always based on Horowitz (I rotated through numerous permutations), and was very aggressive.

I appreciate how difficult it is to try to separate the different infections, asthetes so much overlap. I believe this flattery is Babesia because of the “red spots” and incredible air hunger. I had distinct symptoms with Bart (on top of of the ones common to most tick infections): red striating, shaking, neuro impacts, and very bad joint pain.
Posted 4/13/2019 7:30 AM (GMT -5)
Cecile,

Have you been evaluated for CIRS? I think that would certainly be warranted at this point considering the symptoms you mentioned. CIRS can be related to mold, Lyme, or other sources of biotoxins. I would recommend seeing someone who uses the Shoemaker protocol and will do a complete evaluation for CIRS.

You can get more information on CIRS at https://www.survivingmold.com/shoemaker-protocol/certified-physicians-shoemaker-protocol

Post Edited (WalkingbyFaith) : 4/13/2019 6:34:37 AM (GMT-6)

Posted 4/13/2019 9:19 AM (GMT -5)
Thank you for replying to my post. I was tested for toxin exposure before I was diagnosed with tick-borne infections. Weirdly, apparently nothing showed up. I expected their to be mold issues, but everything was normal (aside from higher copper levels). However, I don’t know the specific tests that were done.
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