posted
Hi, I'm new to the board, but I've been reading it for a little while now. I want to give a somewhat lengthy introduction of why I'm here, so I can get it out of the way! Sorry for the massive text....
I'm a 23 year old guy from Southern New Jersey. I got lyme when I was about 17 (I can remember having trouble turning my neck around in my first car while driving in my car, because it was so stiff).
I first noticed a red ring on my arm or hand, and my mother phoned in the doctors office describing it, and the receptionist nurse thought it was ringworm. I didn't think it was ringworm, from what I had read on the 'net.
So after a week or two the red ring rash spread, and eventually tiled across my entire body from below my neck. I had red rings on my thighs, back, chest, legs, etc.
The doctor said he should take pictures for a medical book because it was so classic (but didn't take any).
I was scared, but he said it could be treated since we caught it early enough.
I was treated with I think 30 days of doxycycline, which I forgot to take some days, so I asked for another bottle and took some more (I forget how much that was exactly).
My neck stiffness was waay better, and my considerable fatigue improved. However, I felt like I was not completely better, and requested another test later, which came up 'negative'.
It's been extremely stressfull on me not knowing whether or not I still have lyme, or any of its co-infections. I've adapted myself to a no sugar, wheat, soy, fruit, etc etc diet.
But I have considerable fatigue (-especially- in the daytime/sunlight), I get sick a lot, my neck makes nasty crunchy noises and get stiff/hurts, get muscle twitches, and my legs & feet hurt on and off.
I want to go to a LLMD, so I can talk to him/her, and get some testing done, once I get insurance again... If I can figure out how to make an appointment with one and deal with my regular doctor.
I recently had a sleep study done, and was diagnosed with 'narcolepsy'. I was diagnosed with ADHD before I got lyme.
Dealing with the fatigue, uncertainty, and mind fog, in this busy world is tough.
I've read a bit of the recent lyme literature, and information, and know a little bit about chronic fatigue and nutritional supplements/neurochemistry.
ANYWAY, now that anyone still reading is probably yawning to death... . Hopefully all that explains why I sometimes write so scatty hehe.
---Thanks for letting me introduce myself. I came here in hopes of sharing information and possibly making some friends.. I'll have more to say later!
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Welcome to the board
To find a llmd -
If you post in seeking a dr please include the area you are in and where you can travel too.
Please make sure you private message is enabled because we do not post drs info on the board due to political issues.
Oh and just so you know test arent reliable for lyme -
you can test negative and still have it.
To my knowledge there arent any llmds in south jersey but there are some in nj.
posted
The Lyme Disease Assoc has an excellent database with names and locations of Lyme Literate MDs. You can find the database at the following link:
posted
I want to go to a LLMD, so I can talk to him/her, and get some testing done, once I get insurance again... If I can figure out how to make an appointment with one and deal with my regular doctor.
Well, dont' wait to get the insurance....make that appointment NOW! Most LLMD's don't take insurance anyway.
I was able to get my insurance to reimburse a portion of my LLMD's fees because I have a PPO.
I'm sorry your first dr subscribed to the IDSA guidelines, which are worthless.
Go to Seeking a Doctor and ask for help finding a dr.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
If you are getting insurance very soon, then I disagree with Lymetoo. If you have been without insurance for a period of time, then once you get insurance, they can refuse to cover a pre-existing condition for up to a year.
So if you get insurance that covers your treatment, they can refuse to cover the Lyme if you get dxed with Lyme before the coverage starts.
Now, if it's going to be a year before insurance, then get thee to an LLMD. Also, many LLMD's having waiting lists, so you might want to make an appointment while you are working on getting insurance.
That said, yes, some insurance companies won't cover chronic Lyme treatment. And many LLMD's are not in insurance networks. But my LLMD is in my network and I hardly pay anything but the cost of supplements.
It depends some on the luck of your insurance company and your geography - if you are near an LLMD who takes insurance.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
welcome sorry you are feeling unwell again. It must be a little scary.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E ! ! !
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Catalyst, I wish to say welcome also!!
Also YOU need an LLMD and quicker the better,,,not like in an hour or so,,,like in the next couple months!!
Given the wait time of MOST good LLMD's that means finding one, a good one,,,and get on the waiting list, but their first available appointment!!
ANd by the way,,,hurry up and get well with expert help!! The present duck is getting you further down!!(YOU really 'needed' more abx, stronger, longer the FIRST time!!)
By the way,,,us guys are outnumbered many to one by the fine ( cool) ladies here,,,welcome aboard we need you (tee hee)from--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
...Just want to thank ^everyone^ for giving me a warm welcome. I seriously feel sooo much better already, knowing that I'm not alone and I have people who are knowledgeable, that I can comfortably talk to!
I honestly do have faith that we can pool together and help each other in ways we could never have done alone.
LD seems to have evoked a Yin - Yang experience in myself, and apparently others.
------- The Yin [receptive, feminine, dark, passive force]
* Pushes me into dark corners of isolation and disbelief (but can increase my receptivity and empathy) -------
------- The Yang [creative, masculine, bright, active force]
* Seems to make me want to keep fighting, never give up, find new solutions, and expose shallow lies/ignorance (but can burn me out) -------
.. Again, you all!
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Welcome! Posts: 1603 | From ny | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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. Hopefully all that explains why I sometimes write so scatty hehe. 
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