Had to add my 2 cents when I saw this thread!
I'm from the US & have had Lyme disease for 19 years!
I was misdiagnosed for the first 13 years even though I had two bulls-eye rashes!
The problem is, if you have the test too early, nothing shows up yet!
When you first have the rash, it's a localized reaction to the bite. You haven't made a full-body response & antibodies to the Lyme bacteria yet! Then
the doctors say, "Your test came back negative, you're fine!"
There are a very few docs who now treat first & test after, to make sure it's gone.
Because I wasn't treated for 13 years I developed Guillain-Barre & was paralyzed from the neck down.
When I was life flighted 150 miles from home, the first thing they asked me was if I had any tick bites or rashes!
When I said yes, 13 years ago, they were furious! They couldn't believe the doctors & specialist that I had seen were so incompetent! At first I don't
think they believed me!
I was scheduled for a spinal tap for the GB. I had read that sometimes Lyme will show up in a spinal when it doesn't in a blood test. So I asked them
to check for Lyme while they were doing it. Sure enough, positive!
When I was transferred to rehab for physical therapy for the GB, they had an infectious disease specialist see me. I was put on antibiotics for 3 or 4
weeks. I felt great immediately! No more profuse sweating or shortness of breath! Even through 2 weeks of rehab & struggling to learn to walk again I
felt great. I wasn't uncoordinated or exhausted anymore! They said they never saw anyone going through rehab, who was so happy! I told them it was
because I was normal again!!! Having GB & being paralyzed was a piece of cake compared to having Lyme Disease!!!
I didn't realize how much I had lost until I had it back again!!! Lyme for me, snuck up on me little by little. Having sweats?-perimenopause. (For 10
years!) Exhausted?- of course you are, you have 5 kids! Can't get a deep breath?-exercise more! Doctors don't listen!!!
Unfortunately, in little less than a year the Lyme was back! They told me it was a whole new case.
I now think it wasn't. I think after having had it for 13 years, that 4 weeks of antibiotics wasn't enough to completely wipe it out! They never did a
follow up test after I was treated, to make sure! Another BIG mistake!
Every test that I've had over the years since I was first treated, has come back at least a 5. The last one last fall was a 7. I've had so many
different kinds of antibiotics! The first kind I was given, that worked so wonderfully, was Vibra-Tab? They stopped making it!!! Doxycycline is the
generic equivalent here. Been on it numerous times...it doesn't work. We had a family doctor years ago, who said don't ever get generics, they don't
always work for everybody! Which makes me wonder if this is why there an increase in antibiotic resistant bacteria!
(But that's a subject for another thread!!!)
I doubt that after 4 weeks of a name-brand antiobiotic, I developed resistance to every kind that they have tried since!!! I think I had too little
too late, & VT was what worked the best for me! Am I doomed to a lifetime of Lyme?
Will the other antibiotics only take it down a number or two? I don't know?
Here's what I've learned on my own & from the doctors & specialists over the years....
1.) The ticks in their life cycle feed & can drop back off. There are various hosts. Deer, mice, BIRDS. (Which may be how it got to Australia....on
migratory birds! Either carrying stowaway infected ticks, or infected birds who were then bitten by normal ticks!) Any mammal can be a host, even your
dog or cat.
2.) Any blood sucking insect could theoretically be a carrier. Ticks, fleas, mosquitoes, etc. Any infected insect that injects an anticoagulant to
feed, could transmit it to you!
3.) Lyme Disease is caused by a spirochete, like syphilis. It theoretically can be transmitted the same way!
Which opens up a whole new can of worms!!!
I don't think that anyone who has had Lyme should donate blood either!!!
4.) Most doctors don't know squat about Lyme Disease & worse don't know how to read the tests! Time for some of those fancy seminars that they go to,
to be devoted to it!!!
5.) If you think you have Lyme, read, read, read!!!! Demand a test. Get a copy of the test! Change doctors. Ask other people who have had it. Network.
Start a support group. Join an online one.
There's my long winded 2 cents worth. Hope it helps someone!!!
Don't give up! Stay positive. We're all in this together. Knowledge is power!
Oops! #1.) What I meant to say was, any warm blooded animal, not just mammal. I DO know a bird is not a mammal!!!
edit on 14-6-2012 by wasobservingquietly because: Lyme brain!!!