need help

Hi 19601960 -

Welcome to the forum! When you get a chance, please read the "new to lyme?" thread at the top of the page - has invaluable info in it. We also have great moderators and they'll be along soon to officially welcome you.

Your journey so far is pretty common with others who've contracted lyme & coinfections. Unfortunately, so many of us get diagnosed with fibromyalgia, or chronic fatigue syndrome, or even MS--which are all simply names given to a group of symptoms, not a diagnosis of the root cause of our illness.

But the pharmaceutical industry has developed drugs (that are unfortunately, only somewhat effective) so palliative care--or the treatment of symptoms--continues to drive the medical industry. The real tragedy is that for most of us, this means real damage these infections cause to our bodies continues to go on unmitigated.

SO - that's my soap box about fibro and CFS... I always urge people to fire that MD and dig deeper. There are answer out there. You've come to a great community here.

We have a lot of similar symptoms but unfortunately my list is long. I also have significant hearing loss in my left ear, vertigo, some seizure issues. I saw a great neurologist who did MRIs and other tests found nothing but he has other lyme patients and knows there is likely more going on than he can understand. But knowing there is no tumor, etc. does provide info.

Were you able to find a lyme specialist there in the "land of no lyme?"

-p

Welcome to our community 19601960 -

I'm sorry for the reason you are here, but hope we can offer some support...and answers for you.

You're probably aware of Lyme Australia - website...but just in case you're not:

www.lymeaustralia.com/igenex-pathology-lab.html

Instructions on how to go about getting an Igenex test in Australia.

Let us know what the results are..ok?

most stuff i deal with..doc will not give me any meds
just b/p pills...3 weeks ago i had a drama..in the shops carpark
and the vertigo hit..tried to walk out of it..like trying to walk on a spinning top
went face first into cement..face was a little mess with a few fractures
got carted off to hospital..i am fixing up ok....but my killer for some time is c.f.s
its going to do my head in i am sure of it...just seems to be at a alltime high

Post Edited (19601960) : 5/13/2016 3:10:58 AM (GMT-6)

I am one of those people that got high blood pressure from lyme. First thing all the doctors see is that blood pressure and they focus on that and do not treat the reason!! Frustrating and I am in America!

Welcome to our community and so sorry you had to find us.

I love your country, by the way. And I could listen to you talk for months!

Welcome.

one good thing about health care i dont pay for blood tests
if it comes back neg..what other test can be done to pinpoint
everything to lyme..something the body is lacking or such
maybe find out my mag levels..but i think fibro can wipe that out as well
have a great weekend all..stay safe this sloth is going to slide out of bed for a coffee
i would go off like a loose cannon without a coffee......by the way can lyme make you loose weight
for a 5 foot/8 male..i went from 59kg to 47.5...about 20% body loss..got tested for cancer all is good

19601960 said...
one good thing about health care i dont pay for blood tests
if it comes back neg..what other test can be done to pinpoint
everything to lyme..something the body is lacking or such
maybe find out my mag levels..but i think fibro can wipe that out as well
have a great weekend all..stay safe this sloth is going to slide out of bed for a coffee
i would go off like a loose cannon without a coffee......by the way can lyme make you loose weight
for a 5 foot/8 male..i went from 59kg to 47.5...about 20% body loss..got tested for cancer all is good

Oh - I was thinking about the Igenex test...my mistake.

I don't pay for regular blood tests, either (Canada).
If it's negative - you can do the Igenex test...often if it is an overall negative test result...there can be indications that mean Lyme disease - certain bands that are lyme specific - may be positive.

Yes, lyme can make you lose weight. I went from 138 lbs to 124 lbs in a matter of weeks. I didn't have much fat on me...so there was muscle loss, too.

19601960 said...
yes the igenex test is a lot of money to get done
i have not worked for 12 months..and no govt handouts
so money is a little tight..unsure if this has meaning
but had blood test last year..came up with glandular fever as neg/neg.meaning it was in the body
and ross river fever as neg/positive..meaning not active but in the body
not sure if you know of ross river..but i am told some things can mimic ross river

If you do get the Igenex test done and don't have a lot of money to spend - you can just get the Lyme WB Igm and IgG for $210. I don't know how the Australian/US $ exchange is.

Most likely a Fedex fee to get it there. Many of us just get the WB IgM and IgG done..

I have not even heard of Ross River fever...and don't know anything about glandular fever.

LOL - not much help now, am I!!

1960 - so sorry to hear you are going through a difficult time. I am glad that you found this forum, so Welcome. It is a safe and supportive haven here and when the outside world has difficulty understanding what you are feeling and going through, you will find that many of us here in the forum can actually relate to how you're feeling. I think the vertigo you mention has always been one of my biggest complaints that usually has some level of anxiety tagging along with it. I really think to have better results Igenex or Infectolab in Germany ( you can mail your sample of blood to them too) would be a quicker and better route. Even if you can contact someone in Australia who uses a syncrometer, they could see if you have it or not ( there are a few in Australia who do test that way for bacteria, viruses etc. check it out at www.drclark.com/utilities/professionals.htm#5 just scroll down to where it says Australia and there are a few professionals who do that. I never got anywhere just by being tested at my family physician - I remember after my first CD-57 test, the health board called me asking why I would even think of having such a test because there is no Lyme here where I live. I could not believe what I was hearing - and this was someone from the health board calling - I will never forget that - it was such an odd call. I hate to say this, but you really can't rely on your average run of the mill G.P. to help you if you have Lyme and don't put off getting PROPER testing either - it is money well spent as this is your health=the longer you put off treating it ( if you do have Lyme), the worse it gets. It is the ugly truth about this disease.

I get bouts of vertigo too. I met with a lyme-friendly neurologist and he ran MRIs, hearing tests (where they strap you into the astronaut chair and tumble you all upside down and sideways checking for loose crystals in the inner ear), and EEG. None of it showed anything. The only thing he didn't test yet is the carotid artery (for clog) w/ sonogram but that is another cause for dizzy spells or vertigo.

Based on a lot of self-analysis, circumstantial evidence and a LOT of study... I strongly suspect that my vertigo issues are caused by fungal/biofilm issues in the inner ear. So this is something you might want to look into. Yeast/fungus an grow out of balance from the gut (due to even one course of abx for some people, but it's certainly a common symptom for those of us in lyme & co treatment due to the abx and antimicrobial herbs). So the y/f generates in the gut but grows up the esophagus into the mouth and head. FYI

-p

i always have my ears cleaned by a doc...the firehose treatment.lol
but one day i woke and the left ear felt blocked or something in it
so went to the doc and said my left ear is blocked again...but it was clear
so went back about a week later asked for re check..all clear
the hearing test from 12 months ago states...the left ear presents a severe sensorineural loss...now in goggle 2 things will do that....and with a smile i can cross out one..fibro is not one of them..and the sore i had is deep in my mind..a guy here in oz tested positive for lyme..he was on ani bios for 2 weeks...so he was still unwell..so they listed him as fibro/c.f.s and co-infections

I have buzzing AND vibrating - yes they are different.

When I first got Lyme symptoms, it started with radiculopathy- nerve pain, numbness...left shoulder blade, arm, hand, fingers.

Within a couple months I had weight loss, sensation of lump in my throat, anxiety, depression...and then one afternoon the vibrations started. That was the symptom that worried me the most...as I knew it was something with my nervous system...and it was my upper left side of back and then extended to my entire upper back, and chest area.


The buzzing started about a couple months later and it was mostly affecting my right leg.

This stuff makes one crazy.