Test 4 lyme?clutching at straws? live melbourne

ok so im desperate. Could be an idiot too…Looking into lyme only because i have red dry eye probs and weird stuff leading upto this vertigo, chronic fatigue, sweats, floaters, almost fainting, sore joints,dry mouth
Im told maybe got sjorgens 3 months before vertigo but dr says unrelated whats the chances???
it seems most here havent had the ngstamus thing (once only for me)
but l in live in vic and the only dr in sydney? am i getting scammed? he says he treats may melbournites but its not really recognised here? am i clucthing at straws??? :?:

Have you ever had a tic bite? The bulls eye pattern?
I’ve been tested for so much stuff…I know a lot of neuros test for lots of immune disorders. I am not familiar with Sjorgens, but I will look it up.
Kelley

hey kelley im pretty sure i got a tick bite off a stray cat i took on definately not flea no bullseyes. Im also seeing a rheumy aswell a neuro. Im missing 2 antibodies for sjorgens but have 1 antibody (low) so rheumy says thats all they can think of. Oh they also threw in fibro due to fatigue but i dont think i have that aswell. They say the chronic vertigo not realted to either i just got that as well!!! i just seem to have all these things in months of each other so i struggle to accept mva too!! but im thinking about your ssri sugestions. i must admit i thinking of trialling predisolne but the quacks dont know im going to do it…

I know what you are going through, but unless you have a clear bullseye pattern, I think you are wasting your time. I speak from experience.

About two months ago – when I was at the 8 month point of having VN/MAV – I was also clutching at straws in the extreme. I did the tests for Lyme Disease and even, gulp, Syphilis and HIV despite having been with one woman for ten years (on the theory that perhaps there was some decades old infection laying undetected). Came up negative on everything. I thought maybe it was my heart, so I did some testing on that. Checked thyroid, white blood cells, etc etc. The GP found the whole thing very humorous, he said, “You have vestibular neuritis and a secondary brain problem like a migraine variant. You’ve had every possible ENT test at the Dizziness and Hearing Clinic. But if you think it is something else and you want more tests, bring it on, I can give you whatever test you want. Name your test, I will give it to you. But my advice is to stick with the likely explanations.”

I am a fan of getting tests because I tend to worry, and the tests put my mind at ease.

There is also a psychological component – the desire for a clear answer (“viola, you have lyme disease, that explains everything!”) when in fact we are struck with an unclear and poorly understood disorder.

I think you should do whatever makes you feel better – if you want the test, then go for it, but I would bet dollars to donuts that it will be negative.

hey u r probably right infact my money might as well be a donut for all i got for it no- further down the track since i saw neuro , and yep i want the simple answer because im sick of being sick. im just a bit dubios because of this so called sjorgens thing . its probably unrelalistic to go to sydney in my position but you get desperate to get back to the way i was and mav/nv or what ever the hell i have makes little sense, its about time there was some full blown research into this
im betting the nerve dysfunction i have wont go now matter how much$$ i throw at it :cry:

longshort,
you put that really well. I, too, had the same response from my GP. SHe said it was something I 'had to go through" when in her mind, it was all anxiety/low serotonin and/or brain chemistry. I never had a migraine headache, or any headache for that matter, so it was really confusing to accept a diagnosis of migraine variant. I wish doctors would suggest some literature so we could get educated on this. It was just like, Oh, you have this…take that and don’t sweat the small stuff. LIterally, my very acclaimed neuro said, “It’s like driving a car…the older it gets the more noises it makes…turn up the radio and don’t worry about it so much”…my husband was with me, and after watching me suffer for months, wanted to punch that smug SOB in the face. Looking back, I see there’s some truth to it, but at the time, I wasn’t looking for detached analogies. I wanted answers. I found most of my education came from this site and my own research.
Becd,
I don’t think prednisone will do much as preventative migraine med. I think anything is possible, but some things are more probable…I would rather you do something that is known for it’s results, instead of trying meds that aren’t on the list for migraine prevention…
Best,
Kelley

Sjogren’s is an autoimmune disorder that is often treated with the kinds of meds used for rheumatoid arthritis. Lyme’s disease is often contracted even though a person is oblivious to having been bitten by a tick thus not even seeing a bull’s eye rash…happens all the time. Chronic Lyme’s disease is more common than people think according to my chronic fatigue doctor, but it’s treatable. MAV, on the other hand, can be masked or misdiagnosed. Dizziness occurs for a myriad of reasons in chronic fatigue and fibro patients: heart problems, blood pressure, blood levels, blood sugar, etc. just as in the ‘normal’ population but seems to be reported often in those patients (again - according to my doctor). I had to make my way to a neuro to finally parse out the migraine variant treatment to finally feel better. Hang in there decd.
Gail

Becd, there’s a guy on another website, Sharp Blue Labyrinthitis ( check out page 13, see his post from Oct. 7, 2010, for example.) His name is Brad and he was told he had labs. He went and had the regular test for Lyme and it came out negative and then had the more sensitive non-standard test for Lyme (igenex) and it came up positive, some dispute the validity of that test, however. I think there is a different test for your area of the world. Anyway, for him it worked out; he was treated with antibiotics and is at 95-99%.

I think it’s a good thing that you want to narrow it down as much as you can. I believe that not always is migraine just its own little disorder. I think that often migraine comes on the heels of some other condition. Whatever your body is dealing can mess with the delicate electrical and chemical systems in the nervous system, causing hyper-excitability in your brainstem and hence the symptoms of migraine. And there are theories that even so-called autoimmune diseases are the body’s attempt to rid itself of some microbial infestation, and not just the body’s random act of stupidity! :smiley: Don’t give up!

I agree with dizzytink. Check out other stuff as well. I feel there are some on here that have straightforward MAV, they seem to get better with a med. Others like myself, over 20 years and 20 preventatives later, no further forward. I have other stuff going on, some autoimmune like you.

We had a dr. private, here in the UK doing tests for Lymes. He said I had it (I paid £400 for private blood tests) he was using a large microscope to detect it in the blood. I did the antibiotics for months, no result but I know others who have been told they have Lymes (or other chronic long term infections) and they have got better on the antibiotics.

I have a friend doing well on prednisone, since the prednisone, her vertigo attacks have stopped and dizziness is minimal. She hardly has migraines now and calls it her miracle drug. Shes been doing well on it for 8 years now. She had a multitude of symptoms as well as the migraine and dizziness. Muscle aches, fatigue etc.

Christine

Hi

My partner is currently being treated with antibiotics for chronic Lyme. He got it in America though but I believe Lyme is in Aust. I don’t really know how they test for it after the event. I have also explored the idea that I may have Sjogrens. I have a postive Schimmers test which indicates dry eye and have had a low positive on an antibody test. However I don’t have the typical markers for Sjogrens which are the SSA and SSB I believe. You can also have a lip biopsy to see if you have it. What are your symptoms? Are you always thristy, have dry eyes, tried and aching muscles etc.? What test came back positive for you?

I was given some Plaquenil to try to see if it improved my symptoms but I haven’t taken any yet as I was trying out Topamax first and wanted to see if that improved things You might find a sympathetic immunologist who would give you a trail on this med.

hi i also had the dry eye test come back positive and low ana 1.80, no other positives. not lupas etc
At first i was rediculously thirsty but better now,chronic fatigue sore joints etc but a bit better, although my eyes are SOOO red looks shocking,always using drops then bam chronic vertigo which wont go!! 24/7 2 years!!
now im seeing a rheumy they are guessing sjorgens b/cause they cant think of anything else and a neuro for vertigo.
i wonder is there a link or is my luck really bad?? a dr in sydney called me after an email i sent him(couldnt believe it!!) he says its worth getting tested 4 lyme and organised it in melb!! so ill prob do soon but most think it doesnt exist here in melb only sydney etc :?: