posted
OK I am declining since Monday when I got my Bell's DX, now my gait is off and i keep feeling like i'm falling to my right. It's still going to be days to find my Lyme's results...I don't know if I should be heading to the ER, or waiting for results. I am on Valtrex and Doxy, but I know those don't make you fall over!
Posts: 3 | From oregon | Registered: Sep 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Tdan, Numbness in my feet an legs was my first clear Lyme symptom. In retrospect, I realise there were earlier, more subtle ones. Due to various external circumstances, i did not seek medical help at the time. It eased/resolved over several days. I can't tell you whether to go to the ER. To me the question is, what would they actually DO for you? David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Tdan,
I can't tell you whether or not to go to the ER either, but I do hope you feel better. Call your LLMD (or current doctor) and him/her know what is happening to you.
God Bless.
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
Lyme disease can also cause disturbances in walking. (May be called ataxia.)
My father had several falls. Sometimes when he was walking, it was as if he was being pulled to the right. He would be looking at the door, but would almost walk into the door facing. I've known other Lyme patients who have fallen, too.
Also, the Co-Infection Babesiosis can cause a sense of imbalance.
Have you started your search for a Lyme Literate Med Dr (LLMD)? I suggest you do that ASAP.
Lyme is a "clinical diagnosis" based on exposure to ticks, symptoms, etc. Lab results are only one part of the info - may be supportive of the diagnosis, but NO LAB TEST should ever be used to "rule out" Lyme disease.
Don't wait for the results of your Lyme test. Make an appt for an evaluation immediately. There is usually a pretty long wait to see a LLMD because there are so few of them.
They check for all possible diagnoses - not just Lyme.
What Lyme test is being done? What lab is being used? How much Doxy are you taking each day?
Answers to these questions could tell a lot about your situation & prognosis.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
TDan, get a cane!! make sure it is an adjustable one. I should have put my pride aside when I first had this problem, but I was delivering pizza to keep our family above the financial rut and had no use for a cane, or so I thought!
I fell so many times I did more damage.. use the cane to help keep your balance.. a third leg gives more support where two will not.. so that when your wieght is unstable and shifts the cane will help you from taking the plunge.. I use mine now most often when I have to walk more than 10 minutes as I get very weak after that period of time. and I find I "loose it" very often.
If you tend to lean right which is my problem use the cane on your right side to help when you loose your balance.. this is not good if you have right side weakness in your arm.. but will help even then.. I get weakness in all limbs at different intervals.. so there will be a point where it may not help me,, but I will take that chance. the last fall I had damaged 2 discs in my lumbar and now I regret not resorting to a cane!
falling can hurt one much more than the emotional setback of using a cane.. I learned the hard way.. when you feel well enough don't use the cane .. you may develope a dependancy on it .. but while you are having this spell of balance issues I personally would use it ....
not worth a broken hip, arm, ankle or spine....
also take notice to this and keep notes to tell your LLMD: pay attention to your feet, are your feet not lifting enough to clear the ground? which will answer the question that the signals may be getting lost between your brain and your legs? this is a form of CNS... it will also help your LLMD give you better testing and treatment...
Is it a equilibrium issue? I had this when I was a teen in high school.. wow, I forgot about that completely until this very minute.. I was excused from phys ed through out high school because no medical physician could identify why I had an imbalance..
hey funny to figure this out so many years later.. strange how this illness dates back to my youth so very much.. even the rheumactic fever can be directly connected to Lyme disease.. wow
I was only recently tested for the first timei my life at age 41,,, and I came back positive.. I wonder if I would have had a positive when I was younger too!...??
too bad this test is not reliable and md's dont run it near enough...
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
Another possibility is that the doxy is causing a herxheimer reaction, which will worsen your symptoms. Although it probably doesn't seem like it, this would be a good thing.
Not saying this is the answer, just a possibility.
I agree with david on ER. They tend not to help lymies except in a few circumstances.
Posts: 8430 | From Not available | Registered: Oct 2000
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Monica
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Member # 224
posted
My Lyme Disease is deeply imbedded in my nervous system and I now walk with a walker. I am hoping as I continue my INTENSIVE abx treatment that I will regain my balance. I also don't pick my feet up high enough.
Whatever you do, make sure you are being treated by a Lyme Literate Medical Doctor. The correct treatment will make all the difference in the world.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Kara Tyson
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posted
Make sure you dont have an ear infection.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Tdan: It sounds as if you have something going on with the balance portion of your middle ear.
When the lyme bacteria invade the cranial nerves, they can affect the nerve to the face, causing Bell's Palsy.
They can also affect the nerves to the ears, causing vertigo and balance problems. Some people have vision problems.
At this point, I doubt if the Emergency Room could help you. Although this is not good, it's not really an emergency. (No breathing problems, heart problems, or bleeding.)
Some of the Lymies here have reported that the balance problems improved while on antibiotics.
By the way, what dosage of Doxycycline did your doc put you on?
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Interesting, all the right sided stuff. One of my first symptoms was a severe falling to the right. Absolutely out of no-where. (This was what finally got their attention, to do MRIs)
Still have that right side fall sensation but to a greatly greatly reduced problem I am able to manage falling by bracing my legs apart, right leg ahead of the left, and holding onto something. Keep your head front and very still.
Anyone else find most of their other symptoms predominantly on their right side? I find my right knee, right ankle, tight head and neck feelings mainly on the right side.
Posts: 190 | From BC Canada | Registered: Jul 2004
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caat
Frequent Contributor (1K+ posts)
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posted
that's ataxia. I'd guess you are on an ineffective dose of doxycycline? It takes 400 to 600mg per day in order for the doxy to be high enough to cross the blood brain barrier.
By conventional ID standards you should be put on IV rocephin right now.
I'd say go to the ER if you can afford to.
The ER may not do anything as lyme produces an Aseptic meningitis rather than a septic meningitis. They may not know what a bacterial aseptic meningitis is. But it's worth a try.
Most importantly get to an LLMD ASAP. The sooner you address this the better!!!!! Please get on it no matter how discouraged or confused you are!
When I first came down with lyme meningitis the local docs refused to treat me. I took 400mg day of animal doxycycline on my own and it stopped the ataxia within 2 days. And my reading level started coming back in 2 weeks. The sooner meningitis is treated the better!!!
Good Luck!
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
oh... Tdan, you do know the lyme tests have very high inacurracy rates, *especially* on the west coast? The ELISA in particular is junk.
Also, none of those tests will show anything unless the blood is taken 2 weeks or so after the tick bite.
Thing is, even if your test is negative you HAVE MENINGITIS. And lyme is a clinical dignosis by CDC standards.
Docs often rx a *high dose* of doxy and look for improvements or herxes as a diagnostic tool.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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even the rheumactic fever can be directly connected to Lyme disease.. wow![[confused]](graemlins/confused.gif)
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