posted
I have a variety of neurological symptoms, as well as bone-crushing fatigue. however, my most debilitating symptom by far (one in which I had since 2007 without any break) is 24/7 dizziness, in the form of a constant rocking sensation.
It is extremely debilitating in that it is relentless and makes it impossible to walk without support of walker, etc., and I'm never without it, even sitting and lying in bed.
i cannot engage in any comfortable activities, even conversing with someone. I was diagnosed with "migraine associated dizziness" for all these years. trialed over 15 meds to no avail.
and, finally, after researching on my own, knowing that I had multi-systemic symptoms with no objective cause, I began to explore Lyme. I have since been diagnosed with Lyme by several top LLMDs.
I began treatment, which I know is going to be a long road, to say the least. But, there's times when I worry that this chronic rocking sensation is never going to get better, even with treatment.
Have others heard of such severe vestibular symptoms with Lyme? I know that Lyme can affect any part of the body and brain. Guess I could just use some reassurance, as sometimes don't know how much more of this rocking I can handle.
Would love to be hopeful that one day it can and will go away. sorry for the moan. I know everyone is struggling. btw - been around the US to many "top" institutions these past years and everything else has been ruled out again and again (inner ear, etc.)
posted
So do you NOT have a vestibular problem, per se?? I mean that your ears SEEM to be OK??
I would make sure you get tested/treated for babesiosis. It causes dizziness and the rocking boat sensation. It requires different meds from Lyme meds.
So YES, you can get better!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lymelisa-I had this symptom but not to the extent you describe. I am so sorry you are dealing with that. But with the proper treatment, it can get better. I agree with lymetoo. Once I was treated for babs, my dizziness went away. I never tested positive but was treated based on my symptoms. After 3 weeks on mepron/zyth, I noticed huge changes in dizziness and headaches. You will get better!
Posts: 238 | From new england | Registered: Feb 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What you describe is how it was for me, too. So, I offer you my "research" gathering.
Indeed, this is classic for VESTIBULAR involvement, liked caused by the toxicity of lyme and also action of lyme, itself, but also sounds like BABESIA is involved (as Lymetoo suggests).
Other than the inner / middle ear involvement, the brain can also be involved - likely from inflammation that goes with lyme, babesia and all else that goes with those.
If you want some explanation and quick labels, you can go for:
. . . Mal de Debarquement Syndrome (MdDS) - an imbalance or rocking sensation that occurs after exposure to motion. . . . "Like trying to constantly walk on a mattress or trampoline" . . .
--------------
For those with "lyme complex" (that includes coinfections, heavy metals, parasites, liver being too stressed, etc. . . .
that "motion" that can trigger all the ups & downs so to speak can be just from blinking. Really, even just moving our eyes can be all the motion needed to rock the boat.
Can't tell if you are working with a LLMD but if whomever you are working with is not familiar with all this, then they are not a real LLMD.
EVERY LLMD knows that lyme & co. brings all kinds of hearing & balance (vestibular issues).
IF there may be more to it, they could refer you to a LL neurolotologist (combination ear specialist with neuro certificiation). But, many do not know about lyme and may prescribe steroids.
AVOID STEROIDS - they can make things much worse and harder to treat.
A non-LL neurotogist may be able to help diagnose some specific issues that may be separate from lyme but if from lyme, they will not be your best experts. IF possible, and IF you LLMD refers you to a specialist for futher evaluation, ask for their advice about one who is LL or at least lyme friendly.
What can help TODAY (at least to some degree):
GINGER CAPSULES, not just a tea but CAPSULES are the best helper.
MAGNESIUM, too.
Ginger, especially helps the inner ear.
ANYTHING to lessen inflammation with also being kind to the liver.
LIVER SUPPORT (including antioxidants) is also vital as the inner ear is the first system in the body to signal toxicity. Lyme & co create neurotoxins and helping the liver can help reduce.
SOME RX can cause - or contribute - to vestibular stuff.
I'm getting to tired to continue. Links below should help. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Avoid ALL fluorescent light bulbs, including all the new "energy saving" bulbs. Go back to the regular incandescent bulbs, though they are harder to find.
I can't explain why, but it's somewhere in the last links set.
posted
I have a very good LLMD. Yes, he believes I also have babesia and will treat for that thanks so much for input I appreciate it Keebler - Definitely refuse to accept diagnosis of MdDS and no hope hoping Lyme and babs caused this
Posts: 138 | From Connecticut | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, it's one thing to refuse to accept a diagnosis of MdDS. I think I know what you mean. MdDS and Meniere's were both label stuck on me. But I do have the symptoms.
These people who like to slap "syndrome" dx may have all the symptoms gathered just fine, though, even if too quick with labels and leaving it at that.
However, not about the label or being put under a vague unbrella of yet another "symptom" but I sure learned a lot getting to understand some things about how those "label dx" work -- and then know that, "oh, yeah, that's what's going on" mechanically, even if I knew the real reason and the real diagnoses.
Still, for comfort and care along the way, we can learn what helps others with those "label dx" --- such as GINGER CAPSULES
and also certain kinds (not all kinds, though) of vestibular training for our own safety when walking, etc. Where to look when walking saves my life. I had to learn how to do that differently.
Still, not everything is lyme. I also have SCD, an issue with bones in my inner ear. Understanding the dynamics of that helps even though I had to reject that it was the end-all, be-all.
I have to say, though, that seeing the CT scan really helped to validate my experiences and, each day, helps me not wonder why I am different.
Still, even medical literature says lyme can cause SCD but many ear specialists know nothing about lyme.
In my case, to repair the missing bone, surgery could help (but my body is just not able to withstand that, and no doctor who operates will really know about lyme and to NOT give surgery-common steroids without proper antibiotic coverage).
Besides, for myself, until lyme & co are fully managed and in remission, there's no point of corrective surgery if the cause is not yet taken care of totally.
So, my hope is that if I do all I can, symptoms will improve. But, gotta clear out the worse "offenders" to see the light, often - but not always. This is were a LLMD &/or LL ND really help us. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
quote:Originally posted by lymelisa: I have a very good LLMD. Yes, he believes I also have babesia and will treat for that thanks so much for input I appreciate it
- Good to hear!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was originally diagnosed with Labyrinthitis. It was horrible and the dizziness (rocking / floating...NOT vertigo) was constant.
I was on several Labs / Vestibular boards and then was finally diagnosed with lyme. I'm happy to say that within 6 months of treatment, the dizziness was gone!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
bcb1200- you message was greatly appreciate. it came when I needed it most. there are times, after 6 years, I cannot imagine the rocking ever going. I was first thinking I had uncompensated labs, and then was told migraine associated dizziness (MAV) and one doc Mal De Debarquement type symptoms. But, mostly was told and tried 15+ migraine meds to no avail while my life slipped away. I cannot walk without much support. it is just relentless. I hope it's not too late for me after suffering so long. I will never give up fighting this. Thanks again for writing. were you also diagnosed with babesia and/or bartonella?
manybites- yes, My LLMD thinks I have babesia. oh gosh - I sure hope no brain damage occurred.
Keebler - thanks so much for the invaluable info. do you still suffer from dare I say MdDS type symptoms? I think you are better now. what treatment helped those symptoms for you? I realize we are all so different though.
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
I was also diagnosed with labyrinthitis. My dizziness went away (for the most part) with babesia treatment!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Jackie81 - I am so grateful that you shared that. Did you also have the rocking sensation. What treatment did you take? yes, I am thought to have babesia as well and will be adding treatment for that. I only began treatment a few weeks ago. thanks again!
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
lymelisa- I had the rocking feeling and off balance feeling and when I closed my eyes it was as if the room was spinning. i took Mepron with zithro (and other things for lyme) for about 8 months and thank god the dizzies went away
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
I had that terrible dizziness that you describe.
Yes, it comes with babesia , lyme and co.-which MUST be treated.
But I did discover that Glutathian IV or IM injections, was extremely helpful for my chronic dizziness, and I can now walk unaided down a street.
I now believe that since glutathian detoxifies the body from toxins- and as a Lyme patient I am loaded with toxins- I have seen much improvement in my vertigo issues.
This is done in conjuction with appropriate Lyme and co. treatment.
I wish you well.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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posted
I am not sure if this is the same thing, but almost all of the time now I am close to blacking out -- that is, any movement makes me "grey out" which feels like a kind of dizziness but where I'm about to black out. It goes way beyond POTS, which I have had for many years.
I do think this could be babesia for me but I'm not sure, as I have treated babs as well as bart and Lyme for years -- but babs much less aggressively as I just can't seem to tolerate the meds for long-term each time I try them.
I also have migraines, along with migraine aura symptoms, and seizures and other neurological problems.
Could you explain why you can't engage in conversing with someone? Is it because of the physical strain, the stimulation and how it affects you neurologically, or just because of plain exhaustion? I have to dramatically limit in-person conversations and can't talk on the phone (most of the time) except for leaving voicemails as I'm just too ill, so I ask out of curiosity.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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I have been treated for Lyme and co. for many years, by a very well known LLMD. Dizziness and spinning was one of my worst and primary sx.
Recently, due to switch in LLMD, my new LLMD is treating me for co-infections which weren't discovered until I went to him, and he also found in blood works that I have a genetic inability to detox well.
So he put me on IM glutathian (injections) 3x weekly.
I think he'll want me to up it to IV glutathian too, and I'm on IV zithromax and oral zith, and the Cowden protocol, I am definitely having better days now.
My neuro sx are definitely better.
He's treating my adrenals also with supplements
But my dizziness is much much better and I am so truly grateful for that.
It is so liberating to be able to walk outside by myself without holding on to anyone or anything, or inside my home, without holding onto walls or counters.
I do not detox well, so this may have been a contributing factor to my vertigo issues, case in point-as I'm doing better now with gluthathian.
I have an appointment to my LLMD today, so I'll see how he wants me to proceed.
good luck to you!
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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posted
conversation is hard, as any stimuli intensifies my rocking even further and creates more intense brain zaps. it's a horrible existence. even sitting alone is torture, though
RI - thanks so much for filling me in. good luck w appt.
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
I have had lyme for many years and severe vertigo dizziness debilitated me. It did improve after IV antibiotics over many months. Valium was the only medication that helped given to me by the ear nose and throat md. I could actually open my eyes!! Hang in there it does get better with lyme treatment. I'd like to say I'm better but at least the vertigo is!
Posts: 61 | From wilton | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
All that you describe is no stranger to me. But it is much better.
If you can lie at a 30 degree angle with head & torso elevated from your hips, not from your neck, that is the best position for the inner ear.
MAGNESIUM is essential, several times a day.
GINGER CAPSULES, therapeutic dose, keeping up on the dose can help - at least to some degree.
I know this is very hard. I read that you will finally be seeing a LLMD for the first time in a few weeks.
What you describe is very common with lyme and also with some other tick-borne infections.
In the meantime, Ginger CAPSULES and a very good MAGNESIUM, divided doses throughout the day may be the best support methods.
Until you can see the LLMD, you might also want to try OLIVE LEAF EXTRACT, only by SEAGATE (capsules) or HERB PHARM if TINCTURE.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I had chronic dizziness and also rocking sensations from mold exposures.
The rocking sensation felt like my mattress was floating on water w/ ripples in the water, the dizziness felt more like my brain was swaying.
Both times it went away when I got away from the mold. (one being a building I worked in, and another, mold in my home.)
I've never been treated for babesia, but still get symptoms if I'm around mold. It's not so bad that the room feels like it's spinning, just an uncomfortable, dizzy feeling.
Posts: 631 | From the south | Registered: Nov 2008
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posted
I get dizziness when I'm having die off from Candida, too.
Posts: 631 | From the south | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Speaking of mattresses, be sure you are not sleeping on a new one (they are doused in all kinds of chemicals, mostly flame retardants).
Some foam mattresses and even some air types that you control can grow mold inside, too. And the foam mattresses can have even more chemicals.
It's a daunting thought that a mattress can be so toxic but it's true. Just hope this is not in your case - but still important to keep in mind. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You are absolutely right. In fact, days after the vertigo/mattress on the water feeling came on, I swore to my mother I felt like her mattress had mold in it (I was staying at her house for a few days.) At the time I was working in a moldy building, but my symptoms seemed to get even worse at night, when sleeping on her beloved "sleep number bed."
Well the next day, I googled mold + sleep number mattress and a number of hits came up, one with a video showing how to find mold in a sleep number bed.
I thought "no way" and after pulling the foam back on the first side of the bed there was nothing, so of course I thought I was being paranoid. Well,when I pulled back the other half of the foam... lo and behold, there was MOLD.
We called sleep number that day and she had a new mattress in 3 days, no questions asked.
So if you have a sleep number bed, and your mattress if more than 7 years old, definitely check it for mold!
Posts: 631 | From the south | Registered: Nov 2008
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posted
The person who had rocking from mold.....I would love to speak with you. I have been diagnosed with mdds but my mycotoxins are high. I sent you a pm.
Posts: 4 | From The south | Registered: Oct 2014
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
This is exactly one of my worst symptoms from the get go. It did go away with treatment but my inner ear is still swollen feeling at times. When I catch a cold it goes straight to my ears with pain, swelling and dizziness.
Recently, I started Byron White A-FNG tincture for mold/yeast issues. I have been off treatment for over a year but really react to certain yeasty foods.
I've been feeling very dizzy on this stuff. My inner ear is really reacting to it, so it could definitely be related to mold/yeast as "girl" mentioned.
I do remember feeling dizzy when I took Diflucan as well. I have heard that both of those meds hit parasites (and possibly protozoa like Babesia).
So, I'm not sure what it's hitting exactly but I'd narrow it down to those two in my situation, likely yeast, but not to say that Babesia could not cause this as well.
...........................................
Breaking up the paragraph for easier reading for many here -
posted
I see no one mentioned this idea yet - I get dizzy when my atlas vertebra is out of place. A good chiropractor puts it back and dizziness stops. Also the occipital connection can get looked at - the connection between the atlas to the skull.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I just tested positive for Lyme. My worst symptom is rocking boat 24/7 dizziness for almost a year now. I was Igenex positive but cdc negative. All igenex co infections negative. Has anyone just had Lyme only with this dizziness?
Posts: 4 | From The south | Registered: Oct 2014
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I dont have constant dizziness but often when I get up, I stagger, loose my balance, and the room reels...I wake up in the middle of the night nauseous, go to the bathroom, and have to hold onto the walls or I'll fall.
it comes and goes. have to be careful where I am so I can get back to the car. but sometimes I get car sick from the motion and it all starts again.
had ears and complete neuro workup. by the way, she rubbed my head so hard I almost cried. she said it was necessary to get good contact..like hell...
all nermal...as usual...
next stop will be state hospital...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I am right there with all of you. Dizziness since April. Diagnosed with Lyme only in August. Since herbal treatment in september, it's only worse. It's about to drive me out of my mind! With this ever end?????
Posts: 1 | From Texas | Registered: Dec 2015
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posted
Hi, I just came upon this post and wanted to say I am still very sick with lyme and co infections but back in 1996 I had a full year of severe vertigo with feeling of being on a boat constantly. I was miserable ringing in ears and also neck fullness. I did IV rocephin and some oral antibiotics and over time it lessened though I still always feel off balance and used to fall to my left (on the floor) now I catch myself. What really helped me was valium tablets its a nerve stabilizer so if its a cranial nerve affected in my case it took the edge off. Nothing else worked and tried Diamox, antivert. Try valium you don't have to stay on it and it worked for me My ear nose and throat doctor saved me with it!!
Posts: 61 | From wilton | Registered: Mar 2010
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