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!
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
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.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
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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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. Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
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?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
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 ...
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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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 ...
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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quote: Without zith or something similar you will quickly develop resistance.
I‘ve read that, yeah ... On the other hand, Buhner doesn‘t seem to think so. He includes Artemisinin as part of his latest Babesia protocol together with other anti-Babesia herbals (cryptolepis, sida acuta, bidens pilosa ...)
Maybe the resistance is only an issue if artimisinin is used without an antibiotic? It may not have to be a pharmaceutical (like azithromycin).
Cryptolepis, sida acuta, and bidens pilosa are systemic antibiotic herbs. So in essence, I‘m using a combination therapy.
Do you remember how long you were on zith and artimisinin?
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Sadly, I do relate to what you are going through, so my heart goes out to you.
For me...the only way I was totally able to rid that feeling was to aggressively treat for Babesia, but that isn't going to help you with the here and now. :-(
I do recall my doctor telling me to try a motion sickness pill (over the counter).
It may have helped a TINY bit. Hard to say.
The good news is that it IS treatable and it WILL go away, but while you are going through it, you just want it gone NOW.
Keep treating and perhaps ask your doctor for suggestions and see if he/she says you can try a motion sickness med.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thanks for responding, tdtid. And for telling me it will go away. I need to hear that ... so I can dream the impossible dream :-)
How did you treat Babesia? Did you have microti or duncani or a clinical diagnosis? Did you have the disequlibrium 24/7.
I think I'll give the motion sickness meds a shot. That's a good idea ...
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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WPinVA
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posted
Well, I can't say I'm totally rid of the babesia. I'm not sure how anyone can ever make that call. Babesia duncani is famously hard to get rid of. But my symptoms have greatly receded.
It was a few years ago that I was on Mepron. Perhaps malarone is the drug of choice now. From what I've read, it has the ingredient of Mepron plus another one.
I took a lot of other things too - arteminisin, biaxin, bactrim, cryptolepis... but it seemed that those long hard months on Mepron were some sort of a turning point.
It's been a while and my memory is a little foggy from back then but yes I do think I had that tipped over feeling 24/7.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Judie
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Member # 38323
posted
Malarone got rid of it immediately. I wish I had done it first.
I first tried high-dose artmesia for 8 months. It didn't make a dent in it.
Eventually I took malarone and mepron together. The "boat" feelings hasn't come back.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I treated Babesia years ago with the Mepron/Zith combo.
It worked very well for me.
I had that off balance feeling as well. It would feel like the floor would sometimes move under my feet.
I get that now and then from Candida issues, but treatment eliminated it.
Hope you get some relief!
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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TNT
Frequent Contributor (1K+ posts)
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posted
quote: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!
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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WPinVA
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posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
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.
posted
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.
Posts: 82 | From New York | Registered: Aug 2012
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posted
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.
Posts: 433 | From new york | Registered: Dec 2004
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posted
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.
Posts: 82 | From New York | Registered: Aug 2012
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posted
I only have the rocking feeling when duncani is dying off, or so I believe. Both quinine/clindamycin and chloroquine/primaquine have produced this effect.
It sucks and I have it right now. It's always worse in the hours after a dose. I wonder how long this crap has to go on. It's been about two months and as much as I want this bug gone, I'm thinking of reducing my chloroquine dose to feel somewhat better.
Perhaps I'll try some resveratrol and detox strategies to see if they don't help.
Posts: 65 | From Montreal | Registered: Nov 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote: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.
Cleo, did you take the Coartem WHILE taking the doxy & rifampin?? I ask, because Coartem reacts with so may meds, plus has a long half-life, so usually it's taken by itself with a wash-out before and after.
But maybe if you were taking it 1/2 dose, ie, 2 tabs twice a day, instead of 4 tabs twice a day, it would work? I'd like to know. Coartem is GREAT for Babesia IMO.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Nula, I wish I could answer your question, but the imbalance/rocking sensation seems to be very common. I've never been tested for Babesia, but had severe imbalance in the beginning and less so, now. Feels like I'm leaning to one side and will fall over eventually, so have to hold on to something. Does not bother me when I drive, fortunately! (also look into "Mal D'Embarquement")
It initially went away with antibiotics, but slowly returning now on herbals. Not sure if this is herxing or herbals are not working.
This year have developed heartbeat skips and palpitations as well as an over-active nerve pulsating under my left eye continually. Don't know what's up with that - I'll post a new thread for that topic.
It's so helpful to read everyone's postings - thank you! Hope you're better now - I see I'm a few weeks late on this thread.
Posts: 35 | From North Texas | Registered: Sep 2014
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