I got the bulls eye 15 years ago, no treatment, followed by swollen knees and vertigo attack.
It subsided on it's own only to come back in 1997. I was then diagnosed w/ Meneire's (inner ear) disease. The meds/treatment for that didn't help, and again, it subsided after some months.
Foreward to 2006. Treated for Meneire's again by different doctor. This time, however, I got a months worth of steroids.
I did not get better and started racking up more symptoms. Doc said he believes the steroids allowed more bacteria to be released.
I started on low dose Mino in December and stayed there w/o being able to increase dose due to more dizziness. Switched to Biaxin in early spring- 1000mg/day. Added Plaq and then Rifampin.
I test positive for Bartonella, so hence the Rifampin. I got a rash 5 days into the Rifampin and had to stop for a while. Also cut out Plaq.
I then started Zith over a month ago and have successfully added back the full 600mg dose of Rifampin w/o a rash.
Doc thought rash was a herx, I blamed Plaquanil. Maybe a herx due to adding Plaq??? Who knows.
Anyway---my dizziness remains the same. Have now pinpointed a herx week every 4 weeks. This month it was milder, though still rough.
I have been on the full dose of Rifampin a week now. I know I am expecting too much too soon if it is the Rif that will help, but still...
Does anyone have any positive info to share on their dizziness improving? Especially using the meds I am on?
I am so desperate, like all of us. I have had this dizziness for 3 straight years and am losing my independence. I can't always drive and I haven't worked regularly in 3 years. I am only on-call, but can barely do that and not at all lately.
I see the doctor next Tuesday. He does not want me to add Plaq back yet until I see him. (Spoke to him 2 days ago about this.) I want to get the show in the road if the Plaq will help.
So, sorry so long.
In a nut shell- Getting better from dizziness: how long to wait??
Thanks, Kitty
Posted by kitty9309 (Member # 19945) on :
up---anyone??
Posted by Leigh Rivera (Member # 21801) on :
this is a great question, since dizzy is my middle name!
Today it knocked me out so bad a cried and went to lay down for 2 hours.
Im so sick of feeling sick.
Posted by kitty9309 (Member # 19945) on :
Leigh-
UGH! You are not alone. It is the pits!
~Kitty
Posted by lymetwister (Member # 19590) on :
See my post on IVIG and Epstein Barr Virus from today. Even though my Dysequilibrium is caused from IVIG, it can also be caused from abx killing off the bacteria. I had this symptom before the IVIG, it just got worse when I got the IVIG. I was treating with Rife and Salt/C prior to the IVIG, but again, the outcome is the same.
It's from the toxins and perhaps cytokine storm.
LT
Posted by kitty9309 (Member # 19945) on :
Thanks LT-
I figure some is my original symptoms and some is due to increased cytokines.
Some of my symptoms have dissapeared or are much less, but this dizziness is hanging on.
I wonder if neuro symptoms take longer to clear??
Hope you get over this crisis soon.
Posted by Peedie (Member # 15355) on :
dizziness and vertigo have always been a problem for me. So much so, I don't dare ride my horse. Even riding a bike on a bad day is very scarey. I tested neg. for co-infections. Only Lyme (as if THAT isn't enough) and have been in abx treatment for abt. 13 mos.
kitty - when you say "doc says..." are you saying you went undiagnosed for Lyme and co. until 2006? After exposure 15 years ago?
Gosh... it's the same story with us - over and over. A Bulls-eye rash is like a neon sign "LYME" - when will these doctors learn to read? -p
Posted by kareamber (Member # 20110) on :
Yes. I get dizziness episodes. When it happens it comes on and lasts several days-weeks, and then gradually subsides. Luckily for me it hasn't be a constant problem! It is horrible...
I always have the dreadful brain fog to accompany it. My head feels so weird... like I'm floating or in a boat. Very off balanced feeling. However even when I feel like this I always pass the neuro exams.
What kind of dizziness do you experince? True Vertigo like the room is spinning? Or like me, the unsteady rocking in boat kind?
I'm experiencing it now along with the horrible brain fog. Going on 4 days straight. I feel like my head is made of cotton and nothing connects right... I get confused and very forgetful.
Hopefully it'll pass... it's very frustrating.
Posted by kitty9309 (Member # 19945) on :
Kareamber: My dizziness began with a discrete epidose of rotational vertigo lasting mere seconds. (This occurred in 1994 after the bulls eye, 1997 and then 2006. It continues as we speak, w/ only brief breaks on rare occasions.)
This resolved, only to resurface a couple of weeks later as a sever dysequalibrium/boat rocking sensation. I also feel like I am bobbong back and forth in the upper body and head.
Standing/sitting still is very hard most times. A few doctors have thought it is Dysautonomia/POTS due to my high heart rate when standing.
I also feel unable to concentrate. Like I can't read and stand at the same time. I feel part of the problem is my eyes. Looking into seeing a neuro-opthamologist soon just to r/o any other problems.
During my herx week, there is definately a "fog" that comes with the increased symptoms, as I can feel it lift a week or so later.
Peedie- Yes, 15 years undiagnosed. I never saw a doctor for the rash itself. It didn't bother me and I didn't know... (despite being a microbiologist!)
I would acyually be able to ride a bike/horse, b/c the dizziness is this unsteady thing that is more of a problem when trying to sit/stand.
It really makes no sense. If this is anxiety (as some have suggested), then give me the psych meds and I'll be on my way! Unfortunately, I was on Lexapro, Ativan, Trazadone 2 years ago w/o any change.
Thanks for all the support. Sorry we are all in this together.
~Kitty
Posted by Peedie (Member # 15355) on :
The "rocking the boat sensation" is a good description. For me it's like turning my head quickly - as in the over the shoulder look to see if it's safe to make a lane change. Sometimes my brain feels like it's in water and it just sloshed in the other direction. I steady myself to focus straight ahead on one object. I guess maybe I don't have true vertigo - as "spinning" doesn't really happen - maybe a half spin... I'm usually in a brain fog. Unfortunately. So don't know if it's worse when going through this. Movement - for sure is key for me. Do you get car sick easily also? Since I've been sick - I get motion sickness easily.
Posted by liesandmorelies (Member # 15323) on :
Yes, I would say dizziness is my number one main symptom that comes and goes the easiest.
If I get stressed or feel like I am going into a flare up, it's the first symptom I usually notice. I think stress and not enough sleep bring it on for me.
I also have what Peedie explains to the tee.
i have learned that I really need to stay in tune with my body and as soon as I feel stressed or tired, I try to get extra rest. It's hard with the kids and the kind of work I do, but I am trying to balance it all which is not easy.
Posted by kitty9309 (Member # 19945) on :
I feel like I am constantly motion sick w/o the nausea.
I often cannot drive- safely. It isn;t the movement, though, it is worse when I stop. Same as if I am walking and then stop to stand still.
It is much harder in a visually busy environment.
Posted by sco24 (Member # 21257) on :
I had dizziness hit me 3 years ago.. had it for 2 years where it was pretty constant..
docs told me a virus caused the inner ear problem, calling it Vestibular Neuritis..
i get periods of 6 months or so where i feel good, then it comes back...
if its lyme related then it definitely is my main and most bothersome symptom.
scott
ps. i've found eating ss rediculously healthy as you can helps.. trying to do things that promote anti inflammatory reactions in the body (diet, exercise as much as you can tolerate) supps for nervous system.
Posted by kitty9309 (Member # 19945) on :
Thanks sco24.
It is an overwhelming thing to deal with everyday.
I have an article that discusses Chronic Subjective Dizziness. It can have 3 triggers: an existing anxiety disorder (no), a real otologic illness (yes- prev dx'd Meneire's) or mixed- a real otogenic illness w/ preceding anxity (no).
So, maybe I have the second scenario: "(1) otogenic, defined as primary neurotologic conditions triggering secondary anxiety disorders;"
Except: I was on Lexapro in 2007, one year after most recent vertigo attack/return of dysequalibrium and it did not help the dizziness.
It is something to consider, but I really don't think it is that. If an SSRI helped at this point, I would sign up for it.
I will be asking my doctor what his feeling are on this.
Who wouldn't have some anxiety after being dizzy for so long?
A friend is encouraging me to remember to take a bunch of fish oil/epa/dha. I exercise when I can- just walks at this point, though.
Posted by angrob75 (Member # 16942) on :
I am right there with you on the dizziness. That is one of my chief complaints and mine is much like yours. I also can not stand up and read at the same time. I started noticing this at church. I can not stand up and read from the hymn book. I also have not been able to drive for quite a while now. I am in my 30's and this is making me crazy to not have my independance. I went undiagnosed for a least 6 years and have had the dizziness all of that time.
Does anyone have something that helps with this?
Posted by kitty9309 (Member # 19945) on :
angrob75-
Your symptoms sound a lot like mine.
I have also recently stated that I feel I am losing my independence.
Do your eyes feel funny, like jumpy? That is how mine feel off and on.
Are you on antibiotics? How long, if so?
Bart or Babesia positive?
My current doctor thinks some of it is Dysautonomia/POTS due to high heart rate, but since I did have a (mis) diagnosis of Meneire's way back in 1997, I feel som eof it is inner ear related.
He says there is no magic bullet and will not rx a benzo for occasional use. (Though I do understand- addiction.)
Posted by angrob75 (Member # 16942) on :
Yea i have lyme and co. My eyes are terrible. They get red and glassy and feel like there is tons of pressure behind them. I was on diamox for the pressure in my eyes and head and that helped for a couple of months but does not help any more.
I have been in treatment for a little over a year now. Now very much improvement may i add. This gets so frustrating.
I also have seizure or seizure like activity really often. 4 of them last week. I say seizure like activity because sometimes i am still able to talk to my family during them and do not always go totally out. Have you had anything that really helped. I need something ASAP or i just might loose my mind.
Posted by Peedie (Member # 15355) on :
My eyes are blood shot like angrob75. I have posted on this before and it seems others have the RED eye from Lyme. My vision used to be doubled and at night lights would flare. Could have been from the rx the Neurologist gave me -= as it is one of the side effects. -OR Lyme - but the double vision and light sensitivity is completely gone after abx. treatment. My vision gets pretty blurry by the end of the day. How do I know if it is from Lyme? - I don't know - I read a lot and do bookkeeping at my work. I haven't felt pressure behind my eyes tho--
When angrob75 talks about seizures, it really hits a nerve (pardon the pun) with me. I often feel "on the verge" and sometimes I get so tense I feel like I could jump out of my skin.
I take what I call a psychological trip and calm myself down again by looking at one thing at a time, thinking about releasing tension in my face, eyes, brain, slowing my heart rate - whatever. No seizure yet.
Geeze - it's hell sometimes. So sorry you all are going through these things. -p
Posted by lymeHerx001 (Member # 6215) on :
\chronic vertigo 5 years.
orthostatic hypotension longer
Posted by JamesNYC (Member # 15793) on :
LymeHerx,
How would you describe your vertigo? Is it constant? Did the Drs diagnose you with something else first before you came to lyme?
(Someone I know had a sudden onset of veritgo since May. The Drs are puzzled and *think* it could be an inner ear virus, but are reaching. He lives in NJ. I wonder if it's lyme).
James
Posted by Pinelady (Member # 18524) on :
I remember when I was talking to my endo about my
low D he said he has never seen anyones that low.
And ask me "How do you feel" I told him I liken it
to being on a boat all day and when you get off you
have the sea legs still. And it does not go away.
He just said Hummm. It has gotten a lot better
in treatment. But this should be top of the
symptom list. Boat legs.
Posted by kitty9309 (Member # 19945) on :
My dysequalibrium is still bad, but the "boat legs" part of it is better.
I still feel woozy in my head, but my body feels stronger and I don't usually feel like I will collapse.
Is Babesia really a cause for this off balance w/o vertigo feeling? I know I have Bart and Lyme, Igenex FISH is negative.
Posted by pepperspeck (Member # 18837) on :
My daughter developed vertigo a year ago when she was 11. We went to many specialist to determine why and not one could give us an answer.
Her vision is involved as well. She tells me that her eyes bounce off the page when she is reading.
Visually stimulating situations (stores, crowds, busy fabric prints, wallpaper or even carpets can trigger the vertigo.
She did have an abnormal ENG, which assesses the balance,vision and brain interaction.
This started about 2 weeks after removing a tick that had been attached for about 24 hours.
More than one specialist said that it could have been due to the tick bite, but because she had lyme previously, she would always test positive.
I took her to a llmd and her Igenx results were not positive, but her symptoms (more than the vertigo and vision issues) point to lyme disease.
She is in her 2nd week of treatment. I am hoping it helps.
I did take her for vision therapy where they retrain the brain-eye connection. She is improved, but not normal. I found it interesting that I met 3 other patients there that had lyme disease.
If you ever want to talk, feel free to pm. I am by no means a vertigo and/or dizziness expert, but have learned more than I ever imagined over the past year.
Posted by Peedie (Member # 15355) on :
pepperspeck - this is when is get that vertigo-like feeling. I think I'm going to hit the pavement for sure because my mind went tippsy and I try to look on a single (stable) point of reference.
It's like sensory overload - when I ride my bike to work - when I ride my horse - when I drive.
I have been able to stay on my feet - so far. My daughter gets this too, but for her it's only when she climbs on a step stool or ladder. I've had that too. She fell completely to a hard tile floor in the kitchen and only bruised and scraped up her skin! Lucky!
The point is - I feel this is Lyme related. I never had these issues before Lyme.
-p
Posted by Piegirl (Member # 14786) on :
I have the boat rocking, woozy, can't concentrate kind of dizzyness as well. At one point when all my symptoms were real bad I had this 24/7 for over a year. Then it slowly got better and now there are times when it is better and times when it's pretty bad.
Buzy,crowded environments make it much worse. Also, a small store with a lot of products (like gift stores) can do it too. These things will cause bad pressure in my head and I'll start bumping into things because of dizzyness and not being able to know what is around me.
I also have the jumpy vision on and off. It makes reading really hard. Like kitty9309,I have started to feel physically stronger. But, my head still feels like mush. It is very frustrating!!! You all are not alone.
Mary
Posted by lymeHerx001 (Member # 6215) on :
my vertigo is constant like being on an elavator
When I close my eyes it feels as if Im on an elavator going up or down on a GOOD day.
On a bad day when I close my eyes I feel as if Im on a roler coaster going backwards faster and faster before I have a panic attack I open my eyes and then am startled.
It like being drunk 24/7 all the time. The bad kinda drunk.
Posted by kitty9309 (Member # 19945) on :
I am so glad I started this thread!
I am not glad we feel so bad.
So many things above read true to my own situation. So many in fact, It would be hard to comment on each reply.
But- Piegirl- your comment "Buzy,crowded environments make it much worse. Also, a small store with a lot of products (like gift stores) can do it too. These things will cause bad pressure in my head and I'll start bumping into things because of dizzyness and not being able to know what is around me." is the closest to how i feel.
I think improvement in this area will be slower. If our body is getting stronger, it just seems the rest will follow.
Try to stay hopeful and positive. I am trying.
Posted by kitty9309 (Member # 19945) on :
Peedie-
"It's like sensory overload - when I ride my bike to work - when I ride my horse - when I drive."
This, too for me is true. I have described it nearly the same.
Posted by dguy (Member # 8979) on :
Been there, done that for over a decade. Driving is OK, it's after stopping that's the problem.
I'm guessing that most of you folks in a similar boat (no pun intended) have low serotonin. IMO that's the connection to lyme: the infection messes up our neurotransmitters.
I bet most of you are lacking your lunulae, except on your thumbs. Me too. It's all part of the pattern.
I've tried about 100 meds, lots of therapies, nothing has been a sustainable solution.
Things that work temporarily for me:
* high dose steriods (a no-no with lyme) * high dose T4 thyroid hormone (mechanism may be via its GABA boosting effect) * benzodiazepines (a tiny dose at bedtime cut the morning dizziness a bunch, but it's addicting and non-sustainable; like T4 it also probably works via GABA)
The dizziness is a symtom. Do what you can to make it tolerable, but the real answer lies in treating the cause, not the symptom.
Posted by kitty9309 (Member # 19945) on :
It is the stopping part for me too, whether driving or walking.
Saw my doctor today. Had a good discussion.
Will continue my meds, add some supps that may help and go from there.
He explained that my prior diagnosis of Meneire's is really a symptom. These diseases cause the inflammation that led to the inner ear getiing messed up.
And here I always thought of Meneire's as a disease, not a symptom. It is an interesting perspective for me.
Posted by greenbow (Member # 21463) on :
i had the boat rocking dizziness and the jumping eyes and the light headed type of dizziness as well...all is worse with the weather and changes in altitude. but, much better since being on zithro which my LLMD feels is finally helping to tackle the coinf.
Posted by kitty9309 (Member # 19945) on :
greenbow-
Yay for you and me!
Zith is one of my meds- just started 1 month ago.
Rifampin recently added as well.
How long did it take to feel a difference with Zith for the dizziness?
![[Smile]](smile.gif)