Hi, I was diagnosed with lyme back in 2002 and have been on maintenance antibiotics ever since. I recently developed a new symptom I thought was lyme related because it's so weird. I constantly feel like I'm on a boat and that I'm walking on unsteady ground. I ran across mal de debarquement syndrome on the net, and the symptoms are identical to what I'm experiencing. It's a persistent rocking or disequilibrium sensation after prolonged exposure to motion. I was on vacation in July on a lake and was on a boat frequently, and hung out on a dock that constantly moved. That's when I first noticed the symptom. It lessens when I'm in a car and when I'm lying down. Does anyone have any experiences with this? Mal de debarquement is rare. How likely is it that I have lyme and this?
Posted by Lymetoo (Member # 743) on :
Does this syndrome go away after awhile??
I've felt that type of thing before, but it goes away after being off the item in motion for awhile.
Do they list any treatments for it??
Posted by TheCrimeOfLyme (Member # 4019) on :
I've had this symptom before- this rocking back and forth inside myself, almost feeling weightless, like Im walking on bubbles when I walk.
Babesia treatment and lyme treatment took care of this for me ( with major yeast treatment as well).
Im curious. When you say "maintenace abx" for years... what do you mean by that? Im just curious as to why you have been on maintenance abx for so long, and wondering if you have had coinfections and what not treated.
I had that unpleasant symptom though for five months. It was the most nervewracking time of my lymed life.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by olivia_ham: Hi, I was diagnosed with lyme back in 2002 and have been on maintenance antibiotics ever since . I recently developed a new symptom I thought was lyme related because it's so weird.
I constantly feel like I'm on a boat and that I'm walking on unsteady ground . I ran across mal de debarquement syndrome on the net, and the symptoms are identical to what I'm experiencing .
It's a persistent rocking or disequilibrium sensation after prolonged exposure to motion.
I was on vacation in July on a lake and was on a boat frequently, and hung out on a dock that constantly moved. That's when I first noticed the symptom.
It lessens when I'm in a car and when I'm lying down. Does anyone have any experiences with this?
Mal de debarquement is rare. How likely is it that I have lyme and this?
Yes, I've been having this unsteady/dizzy feeling the last 5-8 months too.
Welcome, and I'll send you by private message, PM, which you can access in MY PROFILE of my newbies links/advise; 15 pages. Bettyg Posted by olivia_ham (Member # 9960) on :
Thanks for the replies. Re: Mal de debarquement, this syndrome resolves itself after time in some people, but in others it can linger for years. As far as I can tell, there are no known treatments.
I've made yearly visits to my LLMD, each time trying new combinations of oral abx. At the last visit, in January, I was told to continue taking ketek and minocycline as symptoms arise. I'm pretty sure I was treated for co-infections at the very beginning, but was never told that I had any.
This symptom is entirely new to me. It's been really bringing me down.
I've recently hooked up with a new doc. I've relocated to Washington state via NC. The new doc suggested iv treatment but we're waiting for test results and my old medical records to show up.
Is it strange that I've been sort of pulsing abx after all these years?
Thanks again for your replies!
Posted by nellypointis (Member # 1719) on :
Minocyline did this to me when I first used it, but after years of treating Lyme etc (not with minocycline) I can now take minocycline without having that problem.
I also had a lot of vertigo (room-spinning type), treating Babesia seems to have got rid of that
Nelly
Posted by treepatrol (Member # 4117) on :
Ive had that when lyme got in my brain.
Posted by Andie333 (Member # 7370) on :
This has been a periodic neurological symptom for me.
The last time I experienced it was last week, just after I'd started taking tini for Babesia.
Hope you're able to find some answers!
Andie
Posted by Lymetoo (Member # 743) on :
It's unusual for someone with symptoms to only take abx when symptoms crop up. Very unusual.
Is that how you were taking them? or pulsing regularly...as in taking them every other day or something??
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