OT: yup, Lyme disease

Ok, so it is Lyme.  I brought everything I'd found and how my symptoms match up, etc., to my doctor a few days back and she agrees I have "all the classic symptoms" of Lyme disease.  She has me on antibiotics...though, from what I have read, it sounds like she's giving me too little too late.  This has had nine months to settle into every part of my body (and every part of me is feeling it, believe me!) and it's going to take more than a month of meds to beat it.

I'm continuing to find info and support, though, and am figuring out how to deal with it.

Thanks to everyone who offered your support.

Hugs,

Lisa

Wait a minute Lisa there is a blood test for lyme disease.  I am so crazy about that when I ride even with a helmet I wear a cap underneath my riding helmet and do not ride with short sleeve shirts or shorts I keep myself covered. I knew someone who had lyme and she walked around with an IV and pole for about a week and that was years ago and she is doing ok. Didn't your doctor suggest bloodwork?

Get yourself to a specialist.  You will most likely need heavy doses of heavy antibiotics.  Not just a month.

And I agree, there are lab tests....and you need to get them done too.  Just because your doctor agrees you have "the classic symptoms" doesn't mean it's the last word.  You need to be certain.

Hugs and prayers,

Pam

Ditto, I know a couple people with it and a couple K9`s that have it. All are diagnosed with a blood test and all got mega doses of antibiotics. One park ranger got IV antibiotics.

Don`t screw around with a doc that doesn`t definitively confirm.

PS: once you test positive you will always test positive even though it may be under control.

My Dad has had 2 serious outbreaks - HEAVY antibiotics and he was sick as a dog - about 10 times worse then the flu and I have NEVER seen him that sick ever! He had a blood test and the antibiotics and lives a normal life now - best of luck

*hugs*

Liz

Sorry to hear this, Lisa, but it's good you got it figured out.   Good for you for taking the reins on this and pursuing it until you had an answer!

HG

There are blood tests for Lyme but these are not reliable.  Believe me, I have done my research.  I had a blood test for Lyme (and everything else under the sun) early on and it was negative.  I have read (from the American College of Physicians, the CDC, and many others) that the tests often give a false positive or a false negative, and that Lyme is a clinical diagnose, which should be made based upon symptoms and patient history.  I have read of patients who suffered for years, who ended up with permanent damage, whose bodies were completely ravaged by the time they were diagnosed and treated for Lyme disease.  For some, it took months, years, of antibiotic treatment to bring it under control.  It's often misdiagnosed as other things as it progresses, including RA, lupus, MS.  And sometimes just not diagnosed at all.

I've been dealing with this for nine months now.  Yes, my doctors and I have thought to have blood tests.

Lisa

Lisa, I am so sorry.  I hope the antibiotics bring you some relief and that you are able to have a complete recovery.  I'm glad you are continuing to find info and support and are trying to figure out how to deal with everything.  If there is anything we can do to help, please let us know. 

Thinking of you, 
Lisa

Thanks very much, Lisa.

I had the weird experience of feeling worse over the first few days of taking antibiotics.  I posted about it on a Lyme disease forum and learned that it's normal.  Something called a Herxheimer (sp?) reaction.  When Lyme bacteria die, they release these toxins and the patient feels much worse before better.  It's good, though, as it confirms the diagnosis and means the meds are working.  And the last couple days, I've had more time feeling better, which is wonderful - I'm not taking a moment of that for granted!

Lisa

You are so very welcome, Lisa. 

I'm really sorry that you had to experience the "feeling worse before better", but you are right, at least it confirms the diagnosis and means the meds are working.  And I'm thrilled that the last couple of days you have had more time feeling better.  You sound great and it's wonderful to hear that you're learning so much and not taking even a moment of feeling better for granted.  I hope the meds continue to work and that you continue to feel better and better.  I wish only a smooth and complete recovery for you.  Again, if there is anything any of us can do, please do not hesitate to let us know. 

Thinking of you, 
Lisa