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Posted 7/11/2011 12:11 PM (GMT -5)
I'm just wondering if others have experienced these specific symptoms. I can't say that I have full blown vertigo but it's noticeable. Also, I quite often feel like I'm swaying or rocking if I'm sitting or standing still. Elevators are particularly troublesome because when I get off and try to walk it feels like I'm still moving for the next minute or two and the ground feels like it's moving beneath me.

Just curious if others share these symptoms.

Thanks!
Posted 7/11/2011 1:31 PM (GMT -5)
Ooh yes, I have had all of that. For a while it felt like I was in a constant 7.0 Richter earthquake. I couldn't understand why no one else was alarmed and then I realized it was my own personal earthquake!

It passes with treatment. I found the only thing that helped was to relax and not try to fight it. I was so happy the day that I started walking normally again, instead of walking as if I was going to fall down any minute.

Hope you feel better soon.
Posted 7/11/2011 5:22 PM (GMT -5)
As part of my regular ND appointment, she has me do balance things (stand on one foot, or walk a straight line), and then do the same things but with my eyes closed. It is amazing how much worse I do then! She mentioned something about the "vestibular apparatus" being affected.
Posted 7/11/2011 10:02 PM (GMT -5)
Yes - I've had very bad dizziness and vertigo. I remember telling my doctor that I felt tilted and the weird look she gave me!
Posted 7/12/2011 2:15 AM (GMT -5)
 

Jr,

I second Lymester's description!  "Imbalance without true vertigo" is a symptom (for me) of babesiosis.   I saw it on a fairly comprehensive symptom list.  Before I knew I had Lyme & Babesiosis, my chiropractor and I couldn't figure out why I had such poor balance. 

 

Posted 7/12/2011 7:02 AM (GMT -5)
Yes - me too on the dizziness and lightheadedness. It's usually at a moderate level most times so I can functional rather okay but I can have spells where it elevates and I might have to sit or lie down.
Posted 12/1/2014 5:13 PM (GMT -5)
Has anyone been diagnosed with mdds to later find out it is lyme? The rocking 24/7 is horrible.
Posted 12/1/2014 8:26 PM (GMT -5)
Oh yaa, I was diagnosed first with Meniere's disease.
6 months before my Lyme diagnosis actually. The Lyme was there then, just not diagnosed.
My Vertigo was both swaying and spinning, god awful at times.
I have been on ABX for 6 weeks and my Vertigo has subsided.
Last week I had a appointment with my ENT that diagnosed the Meniere's.
She retested me(auditory test) and my numbers are good now.
Both my LLMD and my ENT feel the Lyme was causing my Meniere's.
I just wish the other Lyme symptoms would dissipate that easy!
Good luck
Posted 12/1/2014 9:31 PM (GMT -5)
Oh yes. Years ago after the first symptoms. Walking , then boom, almost fall over. The world would turn for 20 min and I'd puke sometimes. about every two weeks for 6 months, then it lessened.

You just have to get low and close your eyes. And wait.

Now once a year at the worst.

With that and all kinds of other symptoms, I still wasnt D'xed with lyme then.
Posted 12/1/2014 10:46 PM (GMT -5)
Can any of you feel a swoosh in your ears when you get the vertigo? I was getting it when I moved and wasn't focused on something but I always heard it in my ears also. I no longer get the dizzy feeling but I can still hear it.
Posted 12/2/2014 3:12 PM (GMT -5)
Oh yes...this is one of my main symptoms. The worst one after low energy. I often feel like I am walking on a rocking boat. Going up stairs without a railing like in an auditorium makes me feel completely unbalanced. If I do too much my dizziness gets worse.
Posted 12/2/2014 3:17 PM (GMT -5)
Ditto to Summersun and Astroman: walking on a rocking boat, overwhelming nausea with the vertigo, and stair climbing feeling like mountain climbing.

Lately I have it just mildly: upon standing, moving my head too fast, and getting off the elevator causes a weird slow-mo sensation for 5-10 seconds with extreme heaviness in the legs. The elevator experience was actually the first symptom a few months ago that led me to doggedly chase a diagnosis--it was just too weird and so obviously a red flag to keep going another year without knowing wth this is.
Posted 6/6/2015 5:57 PM (GMT -5)
HI! I should have joined this group sooner, but I was misdiagnosed with Meniere's Disease in the summer of 2014 after suffering multiple symptoms since Sept. 2013. I recently went to a LLD here in MD and my blood work showed I have 5 bands of Lyme and probably a co-infection, probably Babesia. But I saw that others have or had vestibular issues with dizziness and lightheadedness and that's what I'm dealing with now, and have been since Sept. 2013 when I thought I was having a stroke or something. I was tested for Lyme early on but all my tests came back negative, in spite of finding the tick latched on to me, and the rash behind my left knee. I've been to numerous specialists and had tests done and MRIs---you name it, I had it. In any case, I'd like to hear from the others who are experiencing the vestibular issues and how are you dealing with it? I've been on Doxy now for just over two weeks and the Tinidizole for one week, and haven't felt much of an improvement (but then again, I've been sick since Sept. 2013!) Any help or information would be greatly appreciated! Thanks,
Posted 6/6/2015 6:03 PM (GMT -5)
OH, and my blood results are

IGG 41, 58, 66, 93 and one nonspecific 64

IGM 41

started with massive 'head rush' and heart palpitation, thought I was having a stroke! then had nystagmus in left eye, nausea, headaches, bad neck pains, various breathing issues, started having ocular migraines (I call them eye buzzes) and constant head pressure and sensations, had a few anxiety attacks, had brain and neck MRI and various tests.....still dealing with constant dizziness, light headedness, feeling of walking on wobbly floor or floating
Posted 6/6/2015 7:58 PM (GMT -5)
Hi the vertigo was one of the most difficult symptoms which took a full 6 months of abx to get under control. I occasionally still lose my equilibrium and I hate the feeling.
Posted 6/6/2015 8:39 PM (GMT -5)
Thank you for your response! I have to say the vertigo and headaches are the worst for me, with the occasional chest pain thrown in. I'm supplementing the abx with herbs
Posted 6/7/2015 7:10 AM (GMT -5)
This is me to a T. My first symptom 5 1/2 years ago and it has been with me everyday pretty much since. It is an awful feeling. It is mainly my only symptom of Lyme Disease. Sometimes my balance feels so off I have to baby step around. Sometimes it causes me to not be able to do things, like my groceries. I call them "attacks"... it definitely fluctuates to different severities. I have it everyday but I'm thankful for the days it calms down a bit so I can function better. I've always felt that if this feeling ever goes away I would feel like I could take on the world.
Posted 6/7/2015 7:13 AM (GMT -5)
Also, most of my showers are only 3 minutes in length because I find it way to difficult to stand in the shower any longer. :(
Posted 6/7/2015 9:03 AM (GMT -5)
I've had various symptoms on and off since Sept. 2013, and like someone posted earlier, I was just walking from my kitchen to the living room when !BAM! I was hit with a sudden head rush and my heart started racing and I felt like I was going to fall over. I stumbled a bit but never fell or passed out, but my heart was racing like crazy and I thought I was having a stroke, and every day since then I've had symptoms of one thing or another. The nystagmus and nausea went away after about a week or two, but the dizziness and light headedness has been a constant. I've had heart palpitations, various chest and breathing issues, several panic attacks, pains and sensations on most parts of my body, etc. etc. A few months ago I started to become very sensitive to chemical smells like carpet cleaner, powders, cat litter, etc. and would get very intense light headedness or sensation of being 'high' (although I've never done drugs) but I've experienced numerous signs and symptoms that I knew I didn't have Meniere's Disease (as was diagnosed in the summer of 2014) and the first neurologist I went to thought I had Vestibular Migraine so he prescribed Effexor, but after taking 3 or 4 pills I knew it wasn't for me. I had a gut feeling I had Lyme disease but my doctor(s) always dismissed it because I didn't have the classic bulls-eye rash and my blood tests came back negative. I did have a red rash behind my left knee that was my first indicator (other than the tick I removed from my abdomen) in the summer of 2013 before all this craziness started to happen. The last month or so I've experienced visual issues like dots or spots but nothing that hinders my daily life but I find my eyes are always in a state of 'moving' more than usual. I can't look at a computer for too long before I feel like I'm on a moving boat. My morning routine usually started with some aspirin or ibuprofen because of the headaches, but those have since calmed down, so now I'm mostly dealing with the dizziness/light headedness every day. Some days are better than others but I still experience it. Before all this happened I was a very active and healthy guy who used to run, hike, bike and anything outdoors and now I'm used to laying around on the couch waiting for some sensation or symptom to pass, and doing basic house chores can easily wear me out and make me nauseous sometimes. Anyways, I appreciate all the help and information everyone is giving me here so far! It's been a very supportive forum and I hope to learn a lot from you and share our experiences
Posted 6/7/2015 9:37 AM (GMT -5)

astroman said...
Oh yes. Years ago after the first symptoms. Walking , then boom, almost fall over. The world would turn for 20 min and I'd puke sometimes. about every two weeks for 6 months, then it lessened.

You just have to get low and close your eyes. And wait.

Now once a year at the worst.

With that and all kinds of other symptoms, I still wasnt D'xed with lyme then.

YES! that's how it happened for me! I thought I was having a stroke or something because it came on so suddenly and intense....after the first few weeks I went to my doctor and a nurse thought I had labrythitis due to the few signs I had at the time (dizziness, nausea, headache) and was told to take meclizine. The first few times I took meclizine I felt I was moving in slow motion and I weighed like a ton of bricks, but it tapered off and I thought it was helping. Then began my numerous visits to my doctor and various specialists since then (2 neurologists, a cardiologist, a chiropractor (that I still enjoy going to and an ENT) and 2 MRIs and a chest X-Ray. The only one who was able to give me a diagnosis was the ENT and he was going off an ENG test that was performed that showed a slight issue in my left ear, which validates why I had that awful head rush feeling like it went up my left side. Most likely all my head issues are related to Lyme disease, which I'm finding out happened to others on here as well
Posted 6/7/2015 10:12 AM (GMT -5)
- Symptoms and signs of babesia are: night sweats,
temperature fluctuations, panic anxiety attacks,
frontal headaches, feeling off balance while walking,
air hunger, racing or skipping of the heart, and
regular de ja vu experiences

Figuring out if a person has bartonella or babesia as part of
Lyme disease is like putting together the pieces of a puzzle...

Just some tidbits from my researching adventures...

*I never wanted to know all i have come to know about this
rickin rackin flippen thang!

And still... there is so much to learn... because it it so individualized...
A person can have the same bite from the same tick (hypothetically)
and yet react so differently.
Posted 6/7/2015 10:36 AM (GMT -5)
My blood work also showed I was positive for Rocky Mountain Spotted Fever, but my LLD thinks it's a 'false positive' for that, BUT, that I have some other co-infection like Babesia or Bartonella. I do get the night sweats and had the air hunger several times, or at least the sensation that my chest is full and I'm gasping for air, but I've had all the head and chest issues you described. My wife had Lyme disease and her main symptoms were achy joints and stiffness, but no 'classic' bulls-eye rash. I didn't have the bulls-eye rash either, but I did have a large red patch behind my left knee (it never spread to my legs or other knee) but one of the doctor's early on dismissed it as being exema. I've done a lot of research on Lyme and found that, like you said, the signs and symptoms can vary drastically from person to person. It frustrates me to know that there are so many others out there that are suffering from LD because their doctor's told them they didn't have it, and/or diagnosed with something else like MD, MS, or Fibromyalgia. I actually sent my doctor a (somewhat) angry email after I got my results back from the LLD barking at him because one of his replies to my concern about the stabbing chest pains and pins and needles sensations I had all over my chest was to "do push ups and they'll go away"
On a prior visit he put his hands up and said "you have a disability; everyone gets them at some point but you have yours now, so just learn to cope with it"
Yeah I don't see that doctor anymore
Posted 6/7/2015 10:44 AM (GMT -5)
Ace - Sounds like my doctor!
Posted 6/7/2015 10:51 AM (GMT -5)
Yep... it is a sad state of affairs when a doctor "acts" like he is ignorant... when in reality he may suspect lyme disease... but doesn't have the guts to deal with it!

Poor spineless idiots... yah i said it!
Posted 6/7/2015 11:01 AM (GMT -5)
makes me wonder why Lyme is such taboo with general practice doctors? I was persistent and was very calm and cool in trying to convince them I had Lyme and he just kept prescribing me more drugs (stuff to make me 'chill out' as he said) and to deal with my disability, etc. In any case, I'm glad I didn't take his advice to 'chill out' and 'do push ups' and 'learn to cope' and took it in my own hands, albeit a more expensive approach.
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