Aussie with lyme???

[Melissa072]

Hi
I'm a 38 year old female in Australia, with many ms symptons.
Have been to 2 neuro's and had several mris of brain, and whole spine, all clear.  L.P. all clear.
Other day I stumbled across a dr in australia who says lyme exists in australia, so I am going to see him next.
These are my symptons tingling, groin, hands, feet (worsens in heat)
incontinence during sleep, numbness under feet, burning patches, cold patches, burning back, ears feel clogged, ears feel like water in them, face pain, 24/7 vertigo, pain in ears, prob more that I can't think of atm.
When my daughter was 7 she experienced ON symptons, then again at 9, she also gets headaches daily, and pins and needles in hands and feet, and atm has small amount of urine in pants most mornings, so I know something is going on with her also.
Anyone with lymes, can you tell me if these symptons sound like lyme??????????
Does anyone with lyme have pins and needles??? And if so do they worsen in heat???
Thanks
Melissa

[shelli92]

Hi
My name is Michelle, i'm 40, live in Aus and have been diagnosed with Lyme about 5 months ago. As Jackie said the symptoms can be different for everyone and change from day to day. I have been having trouble for about 10 years and have only now been diagnosed.....my latest symptoms are vertigo, ear troubles, back pain, hip pain, heart palpitations, trouble with vision etc etc. i have now been on antibiotics and may be for some time. Get results of latest blood test in a couple of weeks.
I don't understand why our government says it is not here because i know it is, but anyway Jackie is very knowledgeable and it is great to have so many people to ask questions of. Hope to hear from you soon. PS a great thing to do is to write down everything symptom day by day to take to your appointment (as Jackie said) as i can testify to your memory goes blank at the most inopportune times. Good luck

[JackieCalifornia]

Welcome to the Lyme forum --

I haven't read specifically about Lyme disease in Australia, but just did a quick google search on "lyme disease australia" and got a lot of hits.  There also seems to be a Lyme disease association 'down under.'  That would be a good place to begin reading, with the usual caveats that you already know about what one reads online ... but it's a good place to start.  

Another useful reading spot is at ILADS [dot] org, the tab 'About Lyme', and the third or so item called Burrascano's 'Diagnostic hints and treatment guidelines.'  They are written for MDs mostly, but are very accessible to nonMDs, and the more I read them the more I understand and make connections in my own mind about my experience and my symptoms.

Neurologists here in the US are not generally known for their appreciation or understanding of Lyme.  I went to see one when I was very very ill, and just happened to be having a reasonably good day.  I also have a bad habit of trying to be cheerful when I see docs, on the subconcious theory that they will be more agreeable and interested if I am not grumpy.  That unfortunately works against me ... the neuro did some 'close your eyes and touch your nose' kind of tests, and banged my knee with a little rubber hammer, and then he showed me the door, shouting down the hallway to the receptionist:  "No follow up for this one."  That was his ever-so-subtle way telling me his diagnosis ... that he thought me to be a mental case.  Oh well.  I am sure there are some neurologists who think broader thoughts about Lyme, but haven't heard of anyone stumbling across one yet.

Finding an MD who 'believes' in Lyme is the trick, and it sounds like you are on the path to doing just that.  If your memory is as spotty as mine was, start jotting down notes of your symptoms every time you experience one, so that you don't blank out in his office and can't remember anything to say.  (Happened to me.)

Of the symptoms you mention, I have heard every single one of them from someone with Lyme.  We are all different from each other, and different ourselves from day to day and sometimes hour to hour.  Lyme affects many bodily systems, so the broad array of symptoms is to be expected.

I'm not sure what 'ON symptoms' are -- ?

Heat can also worsen the symptoms.  Any stressor can and does.

The other aspect to consider is that the ticks that carry Lyme also quite often (maybe 50% of the time) carry other diseases, of which there are a half dozen or so, and these have their own symptoms, which mix and mingle with the Lyme symptoms.  An experienced Lyme doc can, from your symptom description (which is why it's important to jot them down and carry them to the appointment) know which ones to test for.  Lyme tests and these co-infection tests are all different, so they have to be ordered separately.

If you have copies of your MRIs and other tests, you might take them with you to the Lyme doc appointment.  It helps him rule out things he then doesn't need to test for.  Could save time, aggravation and money of additional testing.

If you are satisfied with the doc's approach, then you could take your daughter to see him too.  Some docs here don't like to treat children if they themselves are not pediatricians, but give it a try.  I have found personally and heard from others that non-Lyme specialists are just not up to speed on this cutting edge of medicine, and that applies to pediatricians too.

So -- in your situation, I would definitely get checked by a Lyme specialist.  If he doesn't work out because you just don't hit it off, don't despair, but also don't give up trying to figure this all out.

Please let us know how your appointment goes -- best wishes to you and your daughter!