Could it be lyme disease?

I am a thirteen year old girl and I have been sick for a long time. I have all kinds of different symptoms. I used to play in the grass alot before I got sick but I never noticed a tick bite. Do you always notice if you get bitten by a tick? Nobody knows what I have right now but I was wondering if it could be lyme disease. What are risks of lyme disease if you don't find it for awhile? Please help me.

[Alidora]

It would help if you described some of your main symptoms.

And no, people don't always notice an EM rash after they've been bitten. I never saw one on me, and I have been sick for over 10 years now.

[sportynik]

Sorry. I am very weak, sick feeling, can't sleep at night, can't stay awake during the day, awful neuropathic pain in my legs, nausea, bad headaches, stiff hands trouble writing and typing, can't focuse and concentrate, can't read, dizziness, heart palpitations, muscle aches, back pain, achy body all over, chest pain and pressure, dry eyes and mouth, blurry vision. How did you know you had lyme disease?

[patsy10]

Those are lyme symptoms.  They can also be caused by a rheumatologic disorder.  Have you been tested for other diseases?  You never know for sure unless you get a CDC positive test for lyme.  My doctor told me even if the tests are negative there is still about a 50% chance of having it.  The longer you have it, the less likely you are to test positive. This is why it is important to see a doctor who specializes in lyme for an evaluation.  I did see the rash but did not know what it was.  I have never tested positive but when i have "relapses" I respond to antibiotics.

[bruce622]

I'll put my 2 cents in. I had a tick removed that had embedded itself. was tested and dx'd for lyme. never had the "bulls eye" rash.

[sportynik]

Hi Patsy, Thank you for helping me. I am on high dose steroids right now but my doctor thinks I have lupus but the blood tests aren't coming out positive. Do you have lyme disease? Did you notice when you got bitten by a tick? Where was your rash at? I don't think I have noticed a rash but I also have trouble remembering. I used to play alot in grass so I don't know if possibly I got bitten and didn't notice anything. Can that happen?

[patsy10]

I believe less than 50% of people recall a rash.  I never saw a tick at the time of the rash but I was walking in the woods along a river about 4 times a week in shorts.  So I could have easily picked one up.  I pull them off frequently now.  I've had 3 attached ticks on me this summer.  One was on for three days before I knew it.  They were all on my head.  I  just incidently found them while running my hands through my hair.  They are small and easy to miss.  The rash I noticed was on my chest.  There were 3 bullseye's next to each other.  I don't know for sure if I have lyme or not but...I had the rash, got sick, got better taking antibiotics.  Also, I hike in the woods several days per week and have done this for 20 years.

I would think if you had lupus you would some abnormal lab results.  There is a test called ANA (anti-nuclear antibody).  It is usually elevated in lupus.  Then they run another test for lupus.  Sometimes lupus is hard to diagnose though.  Have you seen a rheumatologist?

[sportynik]

So far I do not think I have seen a rash atleast not that looked weird to me and I have not found any ticks. I do have some abnormal lab results and my ana was elevated. I do have antiphospolipid syndrome which is related to lupus in some way. I am seeing a rheumatologist. Do you know much about lupus? I am very sensitive to heat and I do get a rash when I am in the heat. I also have the butterfly rash on my face. My aunt has lupus also. Do you think I could have lupus?

[patsy10]

Since I am not a doctor I couldn't say.  Hopefully your doctor will get to the bottom of this and give you a definite answer.

[sportynik]

Thank you. I know you couldn't tell me for sure I was just wondering if you knew much about lupus. Do you have any other advice for me? Please write back.

[Alidora]

Good God, if you have Lyme disease, taking steroids is probably the worse thing you can do to your body... They make your immune system weaker, giving more power to the bacteria. How long have you been taking them?

From the symptoms you've listed, you sound like a poster child for Lyme! Check out the list of symptoms on this Canadian website: www.canlyme.com

Here you will find many support groups for Lyme sufferers in MO: www.lymenet.org/SupportGroups/UnitedStates/Missouri  
It's from LymeNet, a good Lyme forum: flash.lymenet.org/scripts/ultimatebb.cgi

I know of a great Lyme specialist in Springfield, MO, just 100 miles from where you live. I will PM you his number and address.

Good luck!

Dora

[sportynik]

I have been taking steroids for a long time I started out on 150 mg of pulse steroids for awhile and I was off for like a couple days and then put back on 60 mg daily and I am still on a high dose. So I sound like I do have lyme disease? I never noticed a tick bite or a rash? Thank you for all the websites. Can you tell me alittle more about lyme? What are risk factors if you have had it for a long time and you just didn't know? Please write back.