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Old 10-17-2008, 07:05 PM   #1
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alexiwildchild HB User
test came back positive for lyme disease?!?!?!

hey everyone.

interesting news today. last week when i went to my reg doc for the heart monitor results, we decided we should do a lyme test just in case--and i mentioned i saw soemone online wiht my constant jumpy vision symptoms that turned out to have lyme disease. so she said, yeah, with my other strange symptoms--like swollen/red toes/knees, it wouldn't be a bad idea. we are out in the country quite a bit. so the nurse called me today--finally--and they said it came back positive???? wow..in shock.

i have the new neuro doc i'm seeing monday and am going to see about having a second test done...just to be sure lol...i just DO NOT know what to think anymore. could this be the cause of my weird symptoms all this time and not MAV??? i will see what happens monday with the new neuro. my reg doc is wanting me to start some antibiotics--BLAH. but i'm going to see what the neuro says first.

just thought this was interesting. any thoughts??

 
Old 10-18-2008, 05:12 AM   #2
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jockywilson HB User
Re: test came back positive for lyme disease?!?!?!

Hi alex , this is very intresting. please could you list all your symptoms
as this sounds very similar to what i am going through.
it would be good to compare.
main symptoms are tinnitus ( every day ), wierd vision,extremely tender neck , shoulders , joints, anxiety,depression no get up and go, iritability,
face tingles, tingles down my arm , strange tickly feeling down back and spine,sleep problems, wake up not breathing properly, wake up to early and cant get back to sleep no matter how tired.

Last edited by jockywilson; 10-18-2008 at 05:13 AM.

 
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Old 10-18-2008, 09:58 AM   #3
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Re: test came back positive for lyme disease?!?!?!

Alexi--

Holy Cow!!!! You are kidding me!? I can't believe it...I am so glad that you had that test. Do you know which test you had? I have heard the testing process for that can be difficult. I am just amazed and so hopeful for you. Yes, I believe Lyme disease can cause a lot if not all of your symptoms. Can you remind me of what symptoms you have had? I can't remember if they have changed over time or what. What if the antibiotics kick this mess for you? What a blessing! Please keep in touch and let us know how you are doing.

Violet

 
Old 10-18-2008, 10:20 AM   #4
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dzguy HB User
Re: test came back positive for lyme disease?!?!?!

A positive lyme test is fairly rare since most tests have a very high false negative rate.

Lyme typically causes a wide range of symptoms, MAV is one.

Lyme involves chronic overactivation of the immune system. This is why many lyme patients report their frequency of catching colds has gone way down (I haven't had a cold in 10 years). The Th1 branch of the immune system is overactive, stamping out cold virii before they can get hold, but this immune overactivation also results in many symptoms.

The bacteria that causes lyme replicates very slowly, and is only subject to killing via the immune system and abx during its reproductive phase. This is why a long treatment with abx is needed, otherwise relapse often occurs. I've seen 18 months minimum as the recommended abx treatment period.

For verification, considering getting a vitamin D test, but it must be for both 25D and 1,25D. Almost all lyme patients have low 25D and high 1,25D, which all but confirms Th1 overactivation. There are specialized treatments for Th1 disease (a web search will turn them up).

Good luck - it will take some time to get well, but now you have a path to follow.

 
Old 10-18-2008, 04:12 PM   #5
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Laura B HB User
Re: test came back positive for lyme disease?!?!?!

Alexiwildchild, there is a message board for "lyme disease" Check it out, has lots of posts.
Laura

 
Old 10-18-2008, 05:09 PM   #6
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Re: test came back positive for lyme disease?!?!?!

hey everyone! thank you all for your replies yeah, i'm still in shock. laura--thanks, i have been checking the posts on there--not sure if it's good news or not that i've been diagnosed with this now...geez...seems like quite a prolonged problem.

dzguy--thank you so much for the info on this...i just am still in disbelief taht i could have this--mostly because of how it all started for me. but hey, i kept going to docs cuz i just didn't quite believe the MAV diagnosis cuz of my particular symptoms. this is very interesting about the long treatment time---wow!! i will definitely see what happens monday and report back .


violet and jockeywilson, well...here goes with my extremely long list of crazy symptoms....

at the very beginning (16 months ago):
*numbness on forehead
*spaced out, weird, strange overall feeling not dizzy, but just not "right".
*red, swollen toes

morphed into (after a few weeks):
*swirling vision, but no extreme spinning vertigo. ex.: ceiling would rotate slowly in a circle. then for example pictures on the wall would move away from the wall--or the wall would move back from the picture---very strange and it wouldn't go away. made me feel dizzy and very NAUSEATED
* black floater in right eye that has yet to go away
* full feeling in ears, pain in ears, felt as if i couldn't "pop" them no matter what
* tingling fingers, toes, sometimes down my arms
* EXTREME FATIGUE
* almost daily headaches, some severe
* constipation/irregularity
* panic attacks/extreme anxiety---which i have NEVER had in my life
* still had the red/swollen toes, now moved into knees and HOT DAILY when standing. (found out to be called erythromelalgia by a dx from rheumatologist)
* HORRIBLE brain fog/inability to concentrate
* depression
* intolerance of sounds/lights
* sometimes severe and prolonged chest pains
* hard heartbeat, and fast rate


at this point, and from about month 3 to current:
* vision has morphed into CONSTANT 24/7 jumpy, shaky, jerky vision. it is there all the time---has not for one second gone away. it is even there when i close my eyes and see the blackness. this is the most annoying symptom of all. it is awful. it gives the feeling of being dizzy.
* tinnitus, seems to have gotten worse in the past month and a half, but not extremely bothersome. rarely the full feeling now.
* swollen, red, hot toes, and knees--now sometimes palms
* fatigue
* brain fog/concentration problems/motor skill problems
* heart flutters (just started in the past 2-3 months), fast heart rate, chest pains (doc says it's sinus arrhythmia from the monitor results).
* tired eyes
* still some light intolerance, but nothing like before
* some irregularity
* some tightness in back of neck, but i think it's from stress
* thinning hair
* general overall all feeling of blah, don't feel good usually, most days are just "ok".

these are about it...from what i can think of right now. i will revise if i can think of more lol.

thank you again for your replies, i will let you know what the neuro says on monday. hope you all are hangin in there ok

 
Old 10-23-2008, 12:22 PM   #7
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Re: test came back positive for lyme disease?!?!?!

ok....so i went to the neuro appt monday....what a joke. that guy had no clue about really anything to do with lyme disease. he wanted instead to give me another prescription of meds to try for a "central processing problem" in my brain. well no crap, there's a problem and i may have the answer...DUH!! he was worthless and now i have to wait another 3 weeks to see an infectious disease doctor to perform some better tests for the lyme, since he had no clue of what ones to perform. so yeah, i told the doc that no, no more prescriptions---i don't want a band-aid for the problem...i want ANSWERS!!!! anyway, just thought i'd give an update on that hope everyone is hangin in there. i'm trying!!

 
Old 10-23-2008, 01:37 PM   #8
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krahon HB Userkrahon HB User
Re: test came back positive for lyme disease?!?!?!

Congratulations ALexi ..... you have Lyme Disease!

A joke there Alexi, but isn't it great, if you went around screaming that you were happy that you have Lyme Disease most people would think you are a nut, but not us fellow MAV'ers

And I am glad to see Violet was happy too. Hold in there Violet!

I hope This is the begining of the end of your living nightmare some like to call MAV.
Lyme disease looks like a tough battle, but I think MAV is much worse, I hope that with proper treatment they can take care of you, remember always to get second opinions if you don't feel what there doing is right, and well I think you know the rest.

That would be awesome if a bunch of antibiotics could help you out, I wish you the world of luck and will pray for you and the rest of the MAV crew.

Just goes to PROVE the point i made in a post I made not so long ago,
YOU gotta keep plugging at it, getting tested for EVERYTHING and ANYTHING as I honestly believe that MAV or Vestibular Migrane in most cases is not the proper DX, yes it has all the symptoms but is a last case DX, if you have no inner ear disfunctions, and most meds and antihistimines and the lot don't work then BOOM theres nothing left, it must be MAV.

I hope you sqach this Lyme and get better soon!

To everyone else: KEEP TESTING, MAKE A LOG OF EVERYTHING YOU DO (what helped what don't and know your past), TRY AND BETTER UDERSTAND YOUR BODY, AND LET EVERONE ELSE WHO SUFFERS KNOW WHAT YOU FIND! Keep posting

See my post on baseline MAV Symptoms on the inner-ear board, I will have tons more info soon

 
Old 10-23-2008, 01:59 PM   #9
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Re: test came back positive for lyme disease?!?!?!

Wow you must have just posted that Alexi, I missed that...
Sorry...

I like the no, no more drugs part, yup, yup your right, out with the bain-aids and lets start the real healing, what a fruitcake this doctor is, make me think that maybe I could go online here, get a degree in 8 years, and be out working the butts of some of these clowns They are not all bad but a lot of em are, I feel your frustration...

It would be better if the doctors were honest: "Well sorry there Alexi, I don't know what I am doing what-so-ever..... but.......while I have you here, how but some drugs to make you feel better!?!? and don't worry, if they don't work, I have a dozen more for you to try on your next visit, well miss, how does that sound?"

HEHE

Well the good thing is he has you scheduled for a specialist, there was a tv show on recently that had a woman on it they had Lyme disease for like 15 years or so, she was cured of it in the 3rd year, but went undiagnosed for the next 8 years till finally over like two years or so she returned to normal...

I would give you the name of the show, but I don't know if we are alound to

Hang in there Alexi, things should get better for ya!

Tyler Krahon

 
Old 10-24-2008, 10:50 AM   #10
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Re: test came back positive for lyme disease?!?!?!

Hey Tyler! Thanks a bunch for your posts! How are YOU doing????

Yeah, that doctor was a moron, and you are so right about keeping on with trying to find an answer. It's weird, my body just keeps telling me that it's not MAV...keep searching. Maybe just cuz this has made me insane?? haha. I've been having too many other symptoms that cannot really be pinpointed to MAV and I just don't think they are all separate, ya know? Yeah, I just wish if the doctors don't know that they admit it and don't just try to shove a bunch of meds down your throat for you to be their guinea pigs. frustrating. are you on MAV meds now??

Thank you again for your kind and supporting words, it means a lot cuz we're all on this dizzy boat together, in essence. I hope that there will be a miracle cure for this crap...and asap. This is a horrible thing to live with day in and day out. I am not sure what to think anymore about any of it actually LOL! I just want it to go far AWAY! as i know you do too. Keep on doing whatever it is to get answers and treatment. I hope mine will be easier than it has been...if it is really Lyme.
Wishing you the best as well!!

 
Old 10-26-2008, 10:09 PM   #11
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Re: test came back positive for lyme disease?!?!?!

Hey Alexi..

Um yea..... MAV is sometimes very hard to disquish from insanity I SO hear you there

And yes, please for yourself and the rest of us, just keep plugging at it, I really think we will find the answer for each of us ourselves with the help of the medical community. The answer may be different for each of us, but with all the research I have done on MAV it seems more likely that most of us don't actually have it intirely but something else that has similar symtoms and in most cases a number of things that add up to our myriad of symptoms...like the ever popular and fun Lyme disease, Yippee! (j/k)

No new news yet on me however I get a bunch of results over the next few days. I wish you the very best of luck with your new doctor who specializes in diseases such as Lyme, I just hope he doesn't turn out to be a Lemon

I promise to keep you posted if you do the same Hope they can DELYME you

Take care sis and have a great day, keep your chin up

TTFN!

TYLER

Last edited by krahon; 10-26-2008 at 10:09 PM.

 
Old 11-05-2008, 11:12 AM   #12
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Re: test came back positive for lyme disease?!?!?!

alexi do u ever remember getting bitten by a tick just waundering... im so happy and jealous that you may have an actual diagnoses. there is no way that i could have been bitten by a tick i live in central valley california and i dont think there are any ticks. Does the doctor that that lyme is what is causing your symptoms?? or you have lyme and the dizziness is something manifested by something else??

 
Old 11-05-2008, 11:53 AM   #13
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Re: test came back positive for lyme disease?!?!?!

well i was doing some research and 10 days before this dizzy thing happened i went to santa cruz ca. i guess they are supposed to have a lyme disease tick there. so now i am wanting to get tested for lyme. but i dont remember getting bitten by one. so what is your doctor going to do for your lyme is she going to start you on an antiboitic.

 
Old 11-05-2008, 12:45 PM   #14
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Re: test came back positive for lyme disease?!?!?!

Quote:
Originally Posted by tbissell View Post
well i was doing some research and 10 days before this dizzy thing happened i went to santa cruz ca. i guess they are supposed to have a lyme disease tick there. so now i am wanting to get tested for lyme. but i dont remember getting bitten by one. so what is your doctor going to do for your lyme is she going to start you on an antiboitic.
hey tbissell! well, from what i've researched, symptoms can take days, weeks, months or sometimes even years to show up after being bitten. a large majority have the typical rash/bullseye mark with it though, but definitely not all of them. they also have some numbing agent when the bite you so you won't feel it anyway, most likely.

as far as myself, my primary doc has prescribed antibiotics, but i am seeing an infectious disease doc on tuesday to do some better/further tests to confirm. so yeah. hopefully i don't end up disappointed and it have turned out to be a false positive...so i'll let you know for sure. no, dizziness can be a symptom of lyme disease, as well as visual problems...and a LONG list of others.

i'll keep you posted! are you still having the constant shaky vision? is that your only symtpom? or have you had others?

 
Old 11-06-2008, 12:03 AM   #15
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Re: test came back positive for lyme disease?!?!?!

yes i still have constant shaky vision every secound of every day and of cource many other strange symptoms but that is the most disabling if i could get pass the vision i could deal with the rest. did you have a bullseye rash? Is there a high chance that there is false positives? You share the most simliar symptoms with me down to being on a roller coaster. hopefully you get some answers to help the both of us as of now almost 4 years into this i am done seeing docs

 
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