What would a Lyme Specialist do for me?

[mols13]

I am only 17 and have had Lyme disease since summer of 2011.

The question- What can a Lyme specialist do to help me? I don't want to be just put on a bunch of drugs to ease the pain and symptoms If I go to one, I want something to happen, to change and not just be on medicine for the rest of my life. If I spent the arm and a leg of money on one, would it be worth it? Did you go to one? What happened? What did they do?

I feel as if I am one-hundred years old. I get so sore so easy, sleepy, bad headaches, and fever like symptoms.
I would love it if I could escape this and not have to deal with it everyday for the rest of my life. I don't want it to slow me down or stop me from doing what I love.

Please give me any insight you have, if there is anything that could help.
Thanks so much,
Molly

[mojogal]

Agreeing with everyone, the sooner you go the better so you don't get misdiagnosed and get worse problems.
Let us know. Good luck.

[JackieCalifornia]

None of is very well educated on Lyme, until we get infected.  That's when the learning begins.

I just google/searched

                         pennsylvania lyme

and got lots of good hits.  Groups like that can be helpful in locating a local Lyme specialist.

You can also send an email to

                         contact [at] ILADS [dot] org

and tell them where in Pa. you are and how far you can travel to see an LLMD.  ILADS is the main voluntary professional group for MDs who understand Lyme as a serious illness that needs prompt and complete treatment.

If you parents have concerns about all this, you might suggest they post here and ask question -- we will be glad to respond.  We are all either Lyme patients, or former Lyme patients, or family members of Lyme patients, and we've been through a lot.  We're happy to share.

Don't wait -- the longer you are infected, the harder it is to treat and recover, because Lyme is a very odd infection that way -- it can hide inside your body where it is difficult to get rid of.  My kid had Lyme at about your age and is just fine now, after treatment.  

Take care -- let us know how we can help.  

[mols13]

Thanks everyone
And wow youvegottobekidding,
that's horrible! I can't believe you actually got all that from lyme. Its good to know what it could actually do to me. My family and I aren't very well educated on it.

[youvegottobekidding]

I don't know anyone who's had worse effects from medicine than they have from Lyme disease.

I was one of the very rare people who got bone marrow side effects and ended up with really low white blood cells from antibiotics. I stopped taking abx and it went back to normal.
But from untreated lyme disease, I got heart damage and needed urgent heart surgery. And my mother has just recently gone blind in one eye from lyme disease.

Antibiotics have various side efects on various people. They are very rarely really bad,
If the side effects are dangerous, or just plain unbearable, your doctor will change them as there are always alternative options.

In my observtion, people who don't like the idea of taking loads of medicine are always people who have never had a serious illness. And once they do get something serious themselves, they do an about turn and are willing to chuck down tons of any drug that could help them.

[Ricobord]

You do not have to accept a life with Lyme Disease!!  I agree with Jackie that you just didn't take antibiotics long enough, and you might not have had a big enough dose.

Get to an LLMD, one who follows ILADS protocols.  The sooner the better!  You are still young and your immune system should do well if it gets the proper help from antibiotics.

The idea of taking a lot of meds for a long time can put you off.  But believe me, it is better than a life of Lyme!  The people who give up because they get discouraged are the ones who stay sick. Go to a good LLMD and stick with the program until you are completely well. You've only had it a year and a half.  While it won't be a quick cure, your odds of a complete cure are quite high, assuming you complete your treatment.

The side effects of the meds are nothing compared to the symptoms of Lyme, which can be crippling and debilitating.

[mols13]

Wow, thanks guys! I really didn't know much about what could happen. I've got some hope now:)

Question though, does the medicine have bad side effects on you most of the time? My boyfriend is very supportive but doesn't like the whole lots of medicine idea...

Thanks for all the help guys

[mojogal]

Ditto youvegottobekidding , it takes sometimes years with the right doctor but you can be cured.
I went 20 years before starting treatment, didnt know back then about lyme, now it is chronic and much worse. You will be cured if you go to ILADS doctor as said above. It's not easy but you will be cured.
Don't give up.

[youvegottobekidding]

No no no!!!! Do not be so defeatist.
The antibiotics didn't work because you didn't take them long enough, adn didn't take enough.

Lyme bacteria are quite good at resisting antibiotics so you need several different types all at once, high doses, and to take them for months or even a few years.
If this sounds gruelling, you're right, it can be. But it's a pice of cake compared to giving up on life and living with Lyme disease forever!
A lyme specialist from ILADS will knwo the right combo and doses for you. If you go to a regular doctor they will never give you enough to do the job properly.

I got lyme when I was 7 and I'm 45 now. I've spent the last 3 years on meds and now, fingers crossed, I may be cured (awaiting further blood tests).
I should have got a diagnosis and treatment a couple of decades ago but, hey, better late than never!

[mols13]

A little bit about what happened-
My family and I went to the beach in June 2011 for a week. By the time we got back and settled in I noticed a little red circle on my leg. We thought nothing of it seeing we life on a farm we thought it might be ringworm. Even with the medicine for ringworm it wouldn't go away and by the time I gave it the chance to go away I was starting to get sore and very bad headaches. Seeing I was only 16 I never experienced the joint pain before, I knew it was something new. I started looking up the symptoms I had and found out that it could be from Lyme. I talked to my mom and we went to the doctors. He insisted it was ringworm but my mom and I said we needed blood-work done. By the time I went to the doctors and got the results it was a about a month and a half after I first noticed the spot. When the results came back positive for Lyme I went on the antibiotic. After the first time being on it, the symptoms went away so I finished the antibiotics and I thought I'd be okay. About 2 weeks later they came back. I went back on the antibiotics and the symptoms never went away again. We stopped the antibiotics and faced the fact that I would have Lyme for the rest of my life.