This is topic Babesia - "boat rocking" sensation. How did you get rid of it? in forum Medical Questions at LymeNet Flash.


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Posted by Nula (Member # 38409) on :
 
I have Babesia duncani.

My worst symptom is swaying, disequilibrium -- the "boat rocking" sensation. I have this 24/7.

The severity varies. It gets much worse when I'm stressed. But it's ALWAYS there.

This feels like ...
- walking on magnetic waves
- walking on a trampoline
- walking on a rocking boat

I presume it's not a vestibular issue (i.e. not ear-related). Rather, it feels like a neurological issue (i.e. brain-related).

When I walk up and down the stairs, it's barely noticeable. Also, walking on snow makes it less noticeable.

I have absolutely no ear issues. So, like I said, it *definitely* feels like it's a neurological issue.

It also gets worse when my Babesia head pressure gets worse.

Anyone out there who has this 24/7? Or is there anyone who had it - even if not 24/7 - and got rid of it?

If so, how?

Thanks!
 

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Posted by duncan (Member # 46242) on :
 
It could be a vestibular problem. The vestibular system includes part of the brain.

I have bilateral vestibular damage.

I am positive for babesia antibodies, but no positive blood smear. So, never got treatment.

Regardless, just advising your vestibular system could theoretically be involved.
 

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Posted by Nula (Member # 38409) on :
 
Hmm ... that's a good point, duncan. Thank you!

Are you not treating Babesia at all?

How does your bilateral vestibular damage manifest itself? Do you have the boat rocking sensation.

Thanks for responding :-)
 

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Posted by duncan (Member # 46242) on :
 
It comes and goes. I cannot figure it out.

It has degrees. When it is bad, I get terrible nausea. I cannot escape the unsteadiness. Lying down does not alleviate it, but I must lie down or I will fall into something.

I cannot explain how it feels. Sometimes it feels like missing a step, but times a thousand. Sometimes the world shifts around me. Sometimes it is more a dizzy sensation. Like pinwheeling.

It is always a little bit there, but just a little. But it will roar into the foreground just to remind me it's to be taken seriously.

Car drives can exacerbate it. Stairs, too.

Oh, sorry, no, not treating babesia, but treating borrelia. I know, two different critters.
 

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Posted by Nula (Member # 38409) on :
 
So sorry to hear this, duncan. It's a horrible thing to feel so unsteady, isn't it?

I don't have nausea or feel dizzy. It's like walking on waves - like something is constantly moving my feet up and down. There is no dizziness in my head. But the sensation does get worse, when the head pressure gets worse.

Lying down usually alleviates my swaying. Though on bad days, the rocking continues even while lying in bed.

I really feel for you. Having nausea along with this sensation must be a nightmare.

Can you try and treat Babesia with herbs?
 

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Posted by Lymetoo (Member # 743) on :
 
Got rid of it by getting rid of babesia. I finished mine off with artemisinin and zith.

Have you tried that combo?
 

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Posted by duncan (Member # 46242) on :
 
Probably, Nula. I have enough problems focusing on borrelia.lol.

You can test for vestibular damage, but it's a weird testing process that takes a few hours. Also, I doubt many places test for it the right way.

I assume you are being treated for duncani? Is that helping to mitigate your symptoms at all?

eta, Lymetoo has much more practical advice than I.
 

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Posted by Nula (Member # 38409) on :
 
I've had vestibular testing. All okay. But, yes, who knows if they did it the right way?

Yes, I'm treating Babesia duncani. Currently with Buhner herbs. Previously with Malarone, A-BAB ...

Most of my symptoms have been affected by the meds or herbs I've been taking

The swaying, however, sticks around. Though it does get worse when I herx ...

Did your LLMD decide not to treat Babesia?

Lymetoo,

Thanks for replying. Azithromycin gave me horrible abdominal pain. I've recently added Artemisinin SOD by Researched Nutritionals as part of the Buhner protocol.

I'm pulsing it - and it does make me herx. However, it hasn't touched the swaying yet.

I can really only take one pill a day (4 days on, 3 days off). Which is really only 250 mg. I am trying to ramp up, but the herxing is horrible.

Which Artemisinin brand did you take and how much?

Did you have microti or duncani. So wonderful to hear you got better ...
 

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Posted by Lymetoo (Member # 743) on :
 
I think I took Researched Nutritionals.

I had whichever babesia is the most common. I can't remember. That was 11 yrs ago!

Without zith or something similar you will quickly develop resistance.
 

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Posted by WPinVA (Member # 33581) on :
 
Have you tried Mepron? I too have/had babesia duncani. Back when I first got hit with it, I had something similar to what you describe - I felt like I was tipped over about 45 degrees. And I kept bumping into things.

It slowly got better by aggressively treating babesia. I was on a lot of treatments but I think Mepron was the turning point. The nasty yellow stuff.

Gradually the tippiness receded. Now, I only am bothered if I'm turning around quickly or dancing or something.
 

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Posted by Nula (Member # 38409) on :
 
WPinVA,

Thanks! That‘s interesting. I‘ve heard that Mepron generally doesn‘t work with Babesia duncani. Glad to hear it worked for you!! I‘ve never been on Mepron, so may that‘s something to consider. Malarone really did me in ... too brutally fatigued to get at out of bed.

May I ask if you had the tippiness 24/7?

I‘m really happy to hear that people got rid of it. Gives me hope ...
 

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Posted by Nula (Member # 38409) on :
 
Lymetoo,

quote:

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Without zith or something similar you will quickly develop resistance.

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quote:

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Originally posted by Lymetoo:
I think I took Researched Nutritionals.

I had whichever babesia is the most common. I can't remember. That was 11 yrs ago!

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Lymetoo, I don't want to contradict you since you are probably old enough to be my mother,

but, I think I recall you saying you used Allergy Research brand artemisinin. And, I think I remember you mentioning you had Babesia Microti.
 

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Posted by WPinVA (Member # 33581) on :
 
I also wanted to add to consider side effects of meds that you are on as a contributing factor. I recently went on minocycline for a non-Lyme infection, and within a week I had significant dizziness issues.

It was not quite the same but pretty similar to the babesia symptoms. It made me wonder if I was in a major babs relapse, but no, it was the mino.

I was on minocycline for a good long time back when I was first sick and treating babs and Lyme, etc. I definitely had the tipped over feeling from the babs (pre-mino) but this experience made me wonder if the mino added to it or prolonged it, and I just didn't recognize it at the time.
 

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Posted by Clint31 (Member # 16420) on :
 
Mine is going away ever so slightly with treatment. However, I have certain triggers that can make it just as unbearable as it ever was (shopping malls, certain stores, public places with a lot of people). At its worst, I couldn't drive hardly with it without pulling over.
 

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Posted by Overwhelmed (Member # 38499) on :
 
OMG, YES! Worst sensation ever- when it's real bad it causes my to feel nauseated! I've noticed that I can NO LONGER play on a trampoline with the kids, or go on rides anymore being that that sensation worsens drastically. Just various combinations of antibiotics AND low processed sugar helps. Something I've dealt with for a few years.
 

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Posted by cleo (Member # 6646) on :
 
Doxy rifampin and two-7 day rounds of coartem mixed in got rid of the rocking sensation, which was bad enough to keep me housebound on really bad days. It has been over 4 years and has not returned.

The coartem did the trick. However, when I took it by itself not much happened. It was the mix.
 

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Posted by Overwhelmed (Member # 38499) on :
 
Honestly, what has helped the most for me, is a low dose of Zoloft. Doc prescribed it for anxiety (although it's mainly used for depression). If I miss my dose, the rocking sensation returns right away.
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Nula:

Do you remember how long you were on zith and artimisinin?

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About 2 months .. and I was DONE!

Prior to that, I had been treated with clindamycin and quinine for about 2 yrs. We rotated 10 days for babesia with 10 days for Lyme. Back and forth.

Also used malarone. Didn't see much there.

Then bingo .. did the zith and ART... gone.
 

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Posted by TNT (Member # 42349) on :
 

quote:

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Originally posted by Nula:
I've recently added Artemisinin SOD by Researched Nutritionals as part of the Buhner protocol.

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quote:

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Originally posted by TNT:

quote:

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Originally posted by Lymetoo:
I think I took Researched Nutritionals.

I had whichever babesia is the most common. I can't remember. That was 11 yrs ago!

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Lymetoo, I don't want to contradict you since you are probably old enough to be my mother,

but, I think I recall you saying you used Allergy Research brand artemisinin. And, I think I remember you mentioning you had Babesia Microti.

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So you're gonna make me find my test results now?? Darn!
 

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Posted by TNT (Member # 42349) on :
 

 

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Posted by Lymetoo (Member # 743) on :
 
Yes, it was Microti!
 

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Posted by Rumigirl (Member # 15091) on :
 

quote:

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Originally posted by cleo:
Doxy rifampin and two-7 day rounds of coartem mixed in got rid of the rocking sensation, which was bad enough to keep me housebound on really bad days. It has been over 4 years and has not returned.

The coartem did the trick. However, when I took it by itself not much happened. It was the mix.

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