I was tested for lyme for the first time....

Discussion in 'Lyme Disease Archives' started by nyssagirl, Jul 5, 2006.

  1. nyssagirl

    nyssagirl New Member

    Two weeks ago I was tested for Lyme and found out yesterday my test came back positive. I am pretty much in the dark about this disease. I found out there is no MD that treats Lyme in Oregon. The naturepath referred me to a dr. in Nevada City, California. It will be a long trip since, I live in Central Oregon. But, it will be well worth it, if I can get some answers. I was diagnosed with fibro in 94. I have had many of the symptoms as far back as I can remember. The only thing I know about myself and a tick bite, was when I was around 7 years old, I had one buried in the back of the neck and they had to dig it out. I have no idea if this could be the cause, as that was about 54 years ago. The physician said my test shows that it is long term, so I have had it some time. I have been sick for a lot of years. The thoughts of just maybe getting some relief is exciting to me! Would love to hear from any of you with any kind of input you would have.
    God bless you!!!
    Nyssagirl
  2. victoria

    victoria New Member

    Welcome, I'm happy to hear you got a positive, on one hand, so that at least you know why you've been ill; but on the other hand, well, this can be a really tough disease to beat. Some people feel better almost immediately after beginning abx, for others it can take a couple of years... or more.

    Part of it has to do with how long you've had it and also what co-infections you may have (tests for those are even more unreliable tho).

    Many people have no idea when they were bitten as the ticks are so tiny, and fewer than 50% get the so-called 'typical' rash or show any other signs of illness. A person can be asymptomatic for many years as well, before something triggers it. I know my son has had it for at least 3+ years, but I'm guessing from the signs/symptoms he's had it at least 5 years.

    You can start learning about lyme by reading the posts here and going to ilads.org - there is an immense amount of information there. There is also a link at ilads for the lymenet flash discussion board - you can get referrals to LLMDs and/or get feedback about the doctor you've been referred to.

    Hopefully the doctor you've been referred to is a LLMD as this can be a really complicated treatment.

    Hope this helps get you started, everyone here is really helpful as well. I wouldn't have known about lyme either without the CF/FM board originally and never considered it for my son if it hadn't been for the board!

    All the best,
    Victoria

    PS: I'll bump Hopeful4's post about signs and symptoms up, also my post about DVDs available from recent conference for patients about treating Lyme...

  3. kellyann

    kellyann New Member

    Hi,
    Well,
    There are lots of nice folks on this board who can answer just about anything, I swear some of the ladies here are so smart! Minimonkey, Victoria, Cindicor, there are so many that are helpful. I don't know what I'd do without them! I live in almost a constant fog myself, haha! Wow, I wonder if you could have had Lyme for 54 years! I know I've had it at least nine years.

    What is Oregon like? I live in Georgia. Lots of trees, hills, and kudzu(a wild vine that grows over everything).

    Don't be bashful, post often!
    Kellyann

  4. minimonkey

    minimonkey New Member

    Glad that you are here! Getting a lyme dx is pretty scary, but it is actually a good thing in the long run -- now you know why you have been so sick!

    I am living proof that long-term lyme can and does respond to treatment -- I've had lyme since *at least* 1988, but more likely since birth (38 years). I am one of those folks who responded very quickly to treatment -- 5 months in, I feel like a new person!

    Can you post the initials (not the full name) of the doctor you have been referred to in Nevada City? I have a feeling I know who it is, and if I'm right, you will be in good hands.

    The advice about lymenet is good advice-- there is a ton of information on that site, though it can be a bit overwhelming at first -- there is also a "seeking a doctor" section there where you can ask for recommendations -- that is where I found my LLNP. I suspect there may be someone closer to you who can treat you. If not -- if you are trekking to Nevada City anyways and want to trek a bit further, I have a fantastic LLNP in San Francisco. She has literally turned my life around, and I adore her.

    I'm happy to answer any questions I can help with -- I do a lot of reading about these diseases.

    Welcome to our little family!
  5. nyssagirl

    nyssagirl New Member

    Thank you so much for the welcome!!! The initials ae S.H. He came very highly recommended. I want to see someone with experience and they say he has it!!
    I wish there was someone closer, but as of yet, I haven't found anyone at all in Oregon. Tht just seems unbelieveable to me. Is it a big hush hush disease, or what? People look at you weird when you tell them you tested positive for Lyme. One lady at water aerobics this morning told me she is really glad we don't have lyme here. The lady who recommened the dr. to me said to be prepared for a lot of contravery, so I think I will keep my mouth shut about it around here.
    Thanks again for writing, hope to hear from you soon!!
    Nyssagirl
  6. nyssagirl

    nyssagirl New Member

    Hi Victoria,
    Thank you so much for writing. I appreciate any help. The biggest problem I have besides the pain, is the memory loss and confusion and concentration problem. I have had these problems for years and years and had a terrible time in school. I quit after my Junior years, I just couldn't do anything. I so envy people who can read and remember what they are reading, because that has never been the case for me, from way back when. I am hanging on to a hope now, that I can be helped.
    I am looking forward to getting to know my new friends on here. Take care and thanks again.
    Nyssagirl
  7. nyssagirl

    nyssagirl New Member

    Hi Victoria,
    Thank you so much for writing. I appreciate any help. The biggest problem I have besides the pain, is the memory loss and confusion and concentration problem. I have had these problems for years and years and had a terrible time in school. I quit after my Junior years, I just couldn't do anything. I so envy people who can read and remember what they are reading, because that has never been the case for me, from way back when. I am hanging on to a hope now, that I can be helped.
    I am looking forward to getting to know my new friends on here. Take care and thanks again.
    Nyssagirl
  8. nyssagirl

    nyssagirl New Member

    Hi Kellyann, thank you for replying to me. I am so glad I have found you guys. I know it will be a big help to me.
    I live in the area of Oregon that has Juniper trees and sagebrush. It is only a few miles, though to a national forest. This is the high desert. We get snow in the Winter. This year we have had tons of rain. We live on a lake and it is full this year.
    Hope to hear from you again, soon and thanks again.
    Nyssagirl
  9. minimonkey

    minimonkey New Member

    Yes, that is who I was thinking of -- he is one of the leading experts on Lyme, and his patients love him. You'd be well-advised to follow up on the referral, I think.

    I find it funny (in a sad way) that Oregon is so adamant about not having Lyme -- the northern California coast is a highly endemic area according to the CDC, and it boggles the mind to think that the ticks would just stop at the state border. A good thing to keep in mind is that California, Oregon, and Washington all have a big problem with ticks carrying Babesia, a co-infection that often occurs with Lyme. I am being treated for it, and that has made a huge difference in my recovery.

    Yes, there is a ton of cover-up and controversy about Lyme -- a lot of it doesn't make much sense until you do a lot of reading about who the main players are, where the money is, etc.

    Glad you are here, and happy to help with answering any questions I can.