No Lyme but have lyme symptoms

[Tinners]

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.

[Tinners]

My dad found this lyme specialist in my area and I am going to see him if the neurologist doesn't have any idea. I just have this feeling that it isn't lyme disease, but I'm obviously not a doctor. I don't know it is just a nagging feeling. Anyway I'm going to the neuro on thursday and I'll keep you guys posted!

[Tinners]

The thing about lyme disease is that I was on antibiotics for 2 weeks which did absolutely nothing, not to mention the DNA test was negative for lyme. What is the likelihood of me having it? I have had several doctors say that it definitely wasn't lyme disease, my infectious disease doctor- the one who ordered the DNA test said he was positive I didn't have it. So I am not sure anymore. I mean I agree it is a possibility, but there a lot of other diseases that match my symptoms as well..
The good news is that I am officially seeing the neurologist on thursday (12/11) the thing is that I have braces, so would they be able to preform an MRI or not? I really want to just be positive I don't have something like a tumor or MS just in case..
I'll keep you guys posted

[lsj38]

Yes muscle weakness is a symptom.  Mine was diagnosed as Fibromyalgia.  I understand how you feel.  I have spent the last 20 years with diagnosis of complex migraine, fibromyalgia, irritable bladder, and so many others, including plenty of doctors that called it stress and dismissed me.  It got so bad that I began to believe that it was a ploy for attention.  I had dismissed the pain in my abdomen as stress after three doctors told me it was.  One night, the pain woke me up and I couldn't sit or lay down without agonizing pain.  But since it was the same pain just worse, I tried to tough it out until morning.  About four am, I couldn't take it any longer and was taken to the emergency room.  As soon as the doctor saw me he told me my gall bladder was the probable cause and sent me for tests immediately.  I was jaundice  and my gall bladder had turned gangue green.  They told me if I had waited much longer, I would have died.  The point of my story is don't let them tell you that it is in your head, or just stress.  That is doctor talk for "I don't know" and the insurance companies don't want the cost of all the tests.  Bless your parents for fighting at your side.  Keep at it.  Let us know how you are doing.

[Tinners]

Thank you for all the help! Can lyme effect muscles because my left leg used to be my good leg but it is hard to lift it up from the ground even when im using crutches??? Also my hands are really weak (especially my right) and its really to say the least frustrating. Right now my parents are waiting for this neurologist to decide if I even need a neurologist. How rude. Thanks again for all the support :-)

[PlateletGal]

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

[PlateletGal]

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

[SOONERMOM]

I am so sorry all of this is happening to you!  Wow, okay you are only 12...There HAS to be an answer to why you have had this sudden onset of problems.  Do NOT give up searching for that answer, OK??

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

[Tinners]

I have a lot of symptoms but this is the whole story:
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?

[PlateletGal]

Can you please list all of your symptoms ?

[cindy903]

You sure sound like an awfully smart 12 year old!

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.

[philamp]

Just wondering what are your symptoms...and did you have a tick bite?  I had one on me in June and the symptoms came about a month later.  I was treated fairly quickly, within three months with antibiotics for almost three months and I am completely better now.  Get your parents to get you in for testing right away,  My son also had tick on him this summer and he was treated just in case after my incident but it was for 20 days not 14.  He is also fine!
Good Luck!

Kimberly, VA