New and Trying to Really Look into Lyme

I’m not quite yet 21 and when I am it will mark just a little over 6.5 years of having my many problems.

The severity of all the problems come and goes but they are always there. I don’t know the difference between lack of motor control and just plain muscle weakness. Nor do I know the differences between twitching, shaking, jerking, trembling, and muscle spasms – I get them everywhere (arms, legs, knees, back, hands, feet, neck, head – only once, but it’s the scariest). My sense of feeling can be off – more than normal, less than normal, completely numb.

*If anyone could try to explain to me the difference, then that would be greatly appreciated

I get numbness or tingling in my fingers and toes quite a bit. Quite often I have issues with moving (usually bending) my fingers.

The motor control in my right shoulder is horrible. I can’t throw a ball for my dog, so instead I try to take her for a lot of walks. Sometimes it has come to needing to do things left-handed, which usually doesn’t go too well.

Twice my knees have given out and my legs are so weak that I can’t walk or even get myself up if I’m sitting. Even after I regain some motor control I still have major problems with stairs.

I’ve recently been getting a really nasty migraine on the left side that goes down my neck. Before taking any meds I was so afraid to just walk around the house because I was that dizzy and disoriented. Since June, I haven’t been able to voluntarily close my left eye (it apparently closes on its own while I’m trying to sleep). I could just be paranoid, but I get this feeling that my hearing in my left ear is worsening.

I have other major problems, but the most likely cause is a mass (mostly likely a cyst) in a certain area.

It would just be nice to know that I’m not crazy and there’s a chance that I can find help here.

Thank you too all who actually read through all of this.

The fact of the matter is I know that there's something wrong, anyone who knows me knows there's something wrong, but no one can figure out what. I'm getting close to giving up on figuring out what is actually wrong. A recent visit with my mom's friend actually sparked some hope. She urged us to try to seriously look into lyme. I've been checked twice - negative.

I live in NH and go to school in VT. I'm willing to see a LLMD anywhere in New England.

Thank you very much!

It might not be lyme, but it's not anything else either. This is really a last ditch effort. All I know about the tests are that lyme is just one thing that is looked for when I give 3-5 samples of blood. My mom was telling me that a friend's husband was tested for lyme with the regular blood test, and it came back negative. However, he took another test - I'm not sure what, but apparently it uses markers - and a marker showed up which meant he did in fact have it. I asked my neurologist to order it for me. He told me that it'd be a waste of money because the test tracks lyme not diagnose it. Something about that doesn't sit right with me. Although, I've stopped seeing him because he pretty much totally gave up on me. As far as obtaining copies of the results, I highly doubt I can get them. There always seems to be an issue with people getting copies of my tests.

*people = doctors, specialists, chiropractor

I understand that doctors do try to help, but I've had some that I do question. That's a whole other story. My only concern about the test results is that the lab doesn't have them nor does anyone else. My chiropractor tried to get a copy of a test and was told that no such test was on file.

Well, I'm just glad I found somewhere that might help me get answers. At the very least, I can learn a lot. I've been given a list of LLMD's close to where I am (home + school).

I'll keep that in mind. And thank you to everyone!

Whenallelsefails,

I've had many of the symptoms you've mentioned--migraines, dizziness, pain/stiffness in hands/feet, numbness, loss of control of my right hand entirely for a few weeks, several cysts, and weakness.

I hope you find answers!  If not Lyme, there are other neurotoxin mediated illnesses that cause similar symptoms, and depending on where you live and where you have traveled, you might consider them, as well.  Mostly the east coast and Florida are the places resposible for things like pfiesteria and ciguetera.

 

lyme14 -- can u tell me where u developed cysts?

whenallelsefails- you sound like my twin! im 21 and have so many similar symptoms though have only been dealing with them since january. i have many neurological symptoms like trouble swallowing, pains/prickling sensations, occasional numbness in leg, head pressure and stiff neck, lowgrade fevers and i too had a mass on my cervical spine mri!! they originally thought it was a cyst, then did an ultrasound which didnt tell us anything but its the size of a golfball, and then had another mri which showed it is likely an intramuscular hemangioma (benign vascular tumor). but they dont think its causing any of my symptoms!
hope your second mri comes back with good news :)

yeah it is a tumor, but benign and they actually dont think its causing symptoms oddly enough so i dont need it removed, at least not now. yeah, having so many symptoms is a mess. i start classes next friday and im terrified! dont know if ill end up completing the semester! but good luck with everything!

 

Honestly, don't know what's in my cysts because they've never been drained.  I don't fully understand the relationship between cysts and Lyme.  I have a cyst in one sinus and in my ovaries.