posted
Hey everyone, I'm wondering how many people have some form of dizziness, unbalance as their main symptom of Lyme disease or other TBDs. Dizziness is my main symptom and was the first symptom I had for a while. I have a constant motion feeling like I'm on a boat. I now have a lot of other symptoms but no "classic" lyme symptoms like muscle aches and fatigue. My LLMD thinks I have lyme and maybe other co-infections.
I'm still a little skeptical that it could be lyme and I'm waiting for my Igenex test results because my symptoms are so strange. But then I remember that I lived in one of the most endemic areas for lyme disease my WHOLE LIFE and played in the woods everyday in the spring and summer in an area filled with tons of deer. I found ticks on me all the time but don't remember a bite or a rash. So how could I ever have escaped lyme? Also, many doctors can find nothing else wrong with me. I do have some UBOs on my brain MRI which the docs tell me is normal.
Just want to know others opinions and somewhat skeptical that I may have found an answer that has eluded me for so many years.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Linnada,
In think you're going to find many, people here with those symptoms, also myself.
Can I ask you a couple of questions? 1- where did you live when you got all those bites?
2-Can you share some other symptoms with us.
Thanks, Roy
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I lived in the woods of lower Putnam County, NY right on the border of Westchester County. I found many ticks on me, just don't recall a bite or rash.
Some of my other symptoms are pressure and throbbing sensation in parts of my face, ringing in ears, lots of anxiety, depression, sinus headaches, random twitching muscles especially right eyelid, electric shocks in my legs after exercise, high heart rate, insomnia, panic attacks, seeing shadows out of corner of my eyes.
The dizziness started for me in 1997, went away, came back in 2001 with more symptoms, very gradually went away and now is back again with even more symptoms.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
whoa, i've got all those. yeah, yesterday i had a bad spell of dizziness.
i think that's the worst.
and weight gain.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had dizziness - vertigo and ataxia (which is like being a drunk sailor). Treating lyme got rid of it but when I started treating bart I got some of it back - just not as bad.
It sounds like you might also have bartonella with the anxiety, depression, insomnia, panic attacks and muscle twitching.
Check our your skin for these changes; peas size brown spots, loss of pigmentation (white spots), stretch marks, tiny blood blisters, unusual swelling like endema but it does not dent when pressed, crusty moles, thickening of the skin, marble like nodules under the skin that you do not notice until you find one and press it - then it hurts, spider veins, broken blood vessels, marks like stacked clams or chicken wire and papules (which I do not know what they are).
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Do you have a LLMD? My boat syndrome was diagnosed as Vitamin D deficiency...It was Lyme that caused
it too. Prayers for a easy road. And remember if you have a neg. test that does not mean you don't
have Lyme. The worst cases often exhibit a neg. test from the borrelia shutting down the immune
system. But Igenex is the best in my book so if even one specific band is positive, you may be
able to challenge to get a better antibody/antigen response on another try.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I am not sure about the main symptom since I have SO MANY things wrong, but I am off balance and dizzy with spells of vertigo ALL THE TIME and its gotten worse lately.
I was diagnosed with Meneire's Disease a few years ago because of the vertigo.
Posts: 13 | From AR | Registered: Feb 2010
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posted
Yes, my main symptom is exactly how you descibe the dizziness:
"dizziness, unbalance as their main symptom of Lyme disease or other TBDs. Dizziness is my main symptom and was the first symptom I had for a while. I have a constant motion feeling like I'm on a boat."
I KNOW mine is from Lyme/Bart as I went camping and came home w/ a bulls eye rash. Tests negative, so I got no treatment. (Didn't know then- 1994- what I know know:( )
The rash went away and was followed by swollen knees and then the first vertigo attack and dysequalibrium.
Mine came and went over the years as well, until 2006. I was again mis-diagnosed w/ Meneire's Disease and goven a month's worth of steroids. From then on, new symptoms kept coming and the dizziness never eased up.
I have been treating for a year, more intense in recent months, and am beginning to see improvements.
As bad as this dysequalibrium is, it is comforting to know that others have this symptom. You usually hear about pain and fatigue, which were less of a probllem for me, though I had that too.
Posts: 819 | From East Coast | Registered: Apr 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dizziness was my first and one of the worst symptoms.
It has been reduced considerably, but not 100%, by treatment for babesia and lyme by an llmd.
In my case, major gains were made by babesia treatment quite quickly. Lyme treatment has taken longer but has helped also.
Babesia is often underestimated as a cause of neurological symptoms.
It does get much better, and having a good llmd is key. Hang in there. It took me over 2 years of treatment, but it is not a problem now and other issues, such as fatigue, have disappeared completely.
Posts: 2557 | From home | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
----------------- All about EARS: ------------------
For those who are sensitive or pained by even normal or soft sounds (sounds not even at noise level):
posted
Thanks everyone for sharing their symptoms. For Keebler, I have been to many ENTs including some of the best neurotlogists in the country. My diagnosis for dizziness used to be "virus in inner ear" and now it's "vestibular migraine" with the only medication for that being anti-depressants. Though my new neurologists concedes that it could be related to lyme and other co-infections (IF the blood test results are positive).
I'm skeptical of this diagnosis because I have so many other symptoms that, in my non-medical opinion, cannot possibly be ALL related to migraine. Like would a migraine cause a constant stiff, sore neck and heart palpitations? Hard for me to accept that one, and that taking an anti-depressant will make it magically all disappear . This is why I am now looking into lyme disease.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The Tinnitus thread explains how lyme causes so many vestibular disorders. Getting assessed by a LLMD is good and some of the other sites can offer tips for what can still help.
If you look at the list of vestibular symptoms and then look at a list of lyme symptoms, they appear very much the same. Babesia, too, really hits the inner ear.
There is also a different virus I just heard of nicknamed "wobbly possum virus" and starts with a "B" but I'm just starting to study that a bit.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Linnada, I'm sorry to say that to me you sound like a classic lyme/TBD patient. You have many of the symptoms I have and I know I have lyme, bartonella, and babesia.
I too had many kinds of dizziness which would come and go. Over the past ten years, I've had 3 episodes lasting about 2 months each and 1 lasting 9 months!!! I did the whole ENT/vestibular rehab circuit several times without it helping one bit. The docs would say things like it was atypical and that sometimes people just get dizzy--bull-ogna!!! When the lame explanations are offered, it's a sign of lyme and I'm glad you're not buying it!
I urge you to see an LLMD regardless of your test results--please!!! These illnesses should be firmly rooted in a clinical diagnosis by a doctor with extensive knowledge and experience with lyme/TBDs.
Also, for me, dizziness/vertigo, panic/anxiety, sleepiness, and depression all came along before all the pain, twitching, fatigue etc. It only gets worse the longer the uninformed doctors fumble the ball.
I'm glad you found this website! I wish had much sooner.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
Linnada, First of all welcome...2nd of all sorry you are having problems and 3rd of all..I'd bet the farm you have lyme.
EVERYTHING you are describing is associated with lyme. The more reading and research you do the more you'll see the pieces begin to fall into place like a jigsaw puzzle.
Its imperative that you get a good LLMD immediately!!! I see you post from Baltimore which is actually a great thing as there are several in that general area (MD-Northern VA). some people have to drive hrs and hrs to get to see LLMDs. I actually live in central va and my LLMD is in Rockville, Md. Let me know if you would like his name.
There is also a link on site to request LLMD referrals.
Please continue to research this as even if your results come back neg (although I have a feeling they will be positive) you may still and most probably do have lyme.
If it looks like a skunk and smells like a skunk it probably is a shunk....you get the point.
I wont go into my story but just to let you know
1)I had sinus infections for YEARS---(later found out it wasnt sinus at all BUT lymes)
2) I had dizzness and running in to walls
3)severe muscle aches -legs and fingers.
I have actually had EVERY symptoms you and others above mentioned except blood pressure
PLEASE I BEG YOU EVEN IF YOUR TEST COME BACK NEGEATIVE and (and he will) the dr tell you you DO NOT have lymes FOLLOW YOUR INSTINTS and GUT and follow through.
YOU have to be your own advocate AS NO DR is going to!!
Power is knowledge and we all have to be responsible for our own health.
You must have been researching some as you had Igenex do your testing--thats great as I had 2 elisa tests done which was negative but then my western blot from igenex and my lab corp bart test BOTH came back positive...my WB has so many bands I qualify for both igenex and CDC--oh goody ):
Anyway, good luck and God bless you.
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
Thanks guys! Don't worry I'm seeing a very good LLMD (recommended by members on this site) who says that even if the tests come back negative, it doesn't always mean you don't have lyme disease. She is pretty certain I have lyme and other TBDs as well. She says it is up to me whether I want her to treat me if the tests come back negative from Igenex but I definitely want to begin treatment anyway. Thanks for all the support and I really feel like I'm on the right track!
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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posted
Linnada..I was told for 2.5 months that I had intractable vestibular migraine and was hospitalised twice for that...given lots of meds including steroids....they just didnt listen to the sweats, palpitations, insomnia for months and months, etc etc....the neurologist heard headache and vertigo and went down that road..........it gradually got better over time, i am now treating babs...and i notice it more again....not sure why........i wish you luck on this road......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Oh, for many, benzos are just too hard on the liver or are too sedating. Ginger Capsules and magnesium have shown to be very helpful for the symptoms and for the liver - while infections are being addressed.
Allicin, too, has been helpful for inner ear symptoms. I found andrographis to help me the most, along with Ginger Capsules and Magnesium. I add Allicin at times. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have POTS and many of the symptoms sound like yours. POTS can come from lyme. Check out potsplace.com
Posts: 37 | From ma | Registered: Feb 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I had severe vertigo and dizziness as a major symptom.
Also have tinnitus (since 2004), had night sweats, headaches, hearing loss, brain fog, etc.
What helped the most with the vertigo and dizziness was Babesia treatment. The treatment I got was Mepron/Zithromax from an LLMD.
Hope this helps!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Dizziness was my first symptom.
quote:Like would a migraine cause a constant stiff, sore neck and heart palpitations?
Had those as well. It's caused my Magnesium depletion, which is definitely a lyme thing.
They can check your red blood cell Magnesium levels - Labcorp runs a pretty good test. If you are low, supplementing with oral mag really won't help much - a couple IV's will work wonders and address quite a few symptoms.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Karen I also had sinus infections for years, really severe ones that would show up on CAT scans but I never really had any symptoms of sinus infections. I never knew that could be related to lyme too.
Question for anyone: If my babesia tests come back negative, do you think I should still be treated for it, since dizziness if my worst symptom?
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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posted
I would say let your LLMD decide how to treat you based on your clinical history and symptoms. I was negative on all my co-infections but my LLMD has mentioned i need to get on Mepron (babs treatment) and then definitely treat with Rifampin (Bart treatment).
This is based on symptoms that are persisting throughout Lyme. Some LLMD's will treat based on symptoms that are persistent, despite negative IgeneX tests.
Unfortunately, we are our own guinea pigs. Until it's better, you will likely try many treatments. Keep your head up though, you're in the right place for advice.
I've learned a heck of a lot more here than even from my LLMD. It's great to have this place.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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