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Lyme Disease Community
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No Lyme but have lyme symptoms
by Tinners, Nov 30, 2008 03:41AM
Just wondering what other diseases are like lyme, because I have a lot of symptoms that are associated with lyme but I have had 3 different tests which confirmed I didn't have it, plus they gave me doxycycline for 2 wks just in case which didn't do anything. Again, anyone know what diseases are like lyme disease that I could have, (keep in mind im twelveyrs old :-) Thanks.
Good Luck!
Kimberly, VA
Sometimes folks do not test positive for Lyme disease, making a clinical diagnosis based on symptoms alone, all the more important.
My advice is to find a doctor who can evaluate you for Lyme disease. I am not saying you have it as I'm not a doctor and I have no idea all the symptoms that can relate to this disease that affects individuals so differently.
Unfortunately, because many doctors do not believe in a persistent Lyme Disease infection, there is an ongoing debate in the medical community. So, when conventional doctors turn you away, you might want to consider seeing a doctor who specializes in Lyme Disease. Since you live in NY -- a state that ranks third in the country for Lyme prevalence -- I wonder if you have any friends and/or neighbors who might have been affected by LD. Can you see their doctor for an evaluation? If not, go to turnthecorner.org, scroll down, click Contact Us to request a list of "Lyme specialists" in your state.
Good luck Tinners! I hope you have a diagnosis and get well soon! Take care.
Can you please list all of your symptoms ?
I have been on crutches for 6 weeks. It started with pain in my right lower abdomen (like appendicitis). I was brought to the hospital where they did an x-ray and cat-scan of my hip area. The doctors suspected it was appendicitis until they saw the test results- completely normal. About 4 days later my abdominal pain worsened suddenly and I couldn't move my right leg. I went to the hospital again, they did the x-ray and cat scan again of my hip, which were normal. Then they did an ultra sound, which was also normal. They discharged me and told me to follow up with my primary care doctor, and gave me crutches since I couldn't walk. I have been tested for Lyme disease and it was negative, but i was put on doxycycline anyways for two weeks which didn't help whatsoever. I went to an infectious disease specialist who did blood tests for things like mono- everything was normal once again. My parents are now looking for a neurologist to get an MRI. For the past 6 weeks I have experienced, fatigue, muscle weakness primarily in arms and legs, hallucinations ("rain", silver dots, black dots and black clouds, sometimes they are still there when i close my eyes), ringing in ears, hear weird sounds (music, muttering ect), inability to stand from sitting position without using my hands, loss of concentration, memory loss, slurred speech or stuttering, sensitivity to light, intermittent headaches, tilted head (recent onset), continued right hip pain, occasional right shoulder pain, difficulty doing daily activities with right arm especially, burning sensations on bottoms of feet, new symptoms arise or intensify at night, headaches (top and back of head, like it is going to explode),and inability to sleep normal hours (sleep during day awake at night). I've seen an eye doctor who said i don't have anything obvious wrong with my eyes. It's getting more and more difficult to use my crutches because I am so weak. I've missed 4 weeks of school and have 3 tutors. Any suggestions?
With that said, it sure seems like lyme disease COULD be a possibility here. Unfortunately, the tests for lyme disease aren't always the most accurate. There is a lab that specializes in testing for tick borne illnesses called IgeneX. My first screening test was negative and so months later, I sent my blood off to IgeneX for testing and it was positive. Go to IgeneX.com and you can order the kit for free and it will be sent to your house. The tests that you want to have run are the Lyme IgM and IgG Western blot and together they cost @$200.
I am glad to see that your parents are still actively searching out answers for you even though all of your testing has been normal so far. (I would agree that you should be seen by a neurologist and have a MRI run)
Many times, lyme patients are told there is nothing wrong with them and their labs are normal too. When you have been to numerous doctors and none of them have answers for you, it is a good idea to check out lyme disease.
Just a thought here: I wonder if the doxycycline dose they gave you just wasn't strong enough, considering what all you have going on here???
You take care and keep us updated, okay?
Stacey
Hi Tinners !
You may want to check out Dr. Garth Nicolson's website and discuss this with your parent(s) and physician :
http://www.immed.org --- link to Home Page
http://www.immed.org/illness/clinical_testing.html
P.S. ~ I would also find out if your insurance will cover the lab testing (if you choose to go that route).
Wishing you the best.... stay in touch, please !
PlateletGal