LymeNet Flash: New to Lyme from New Jersey

This is topic New to Lyme from New Jersey in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/67496

Posted by Karol (Member # 15831) on :

Hi everyone,

I am trying to navigate this board and Lymetoo told me this is where all the action is, so here I am.

I was just dx with Lyme and I am starting my 4th day of Doxycycline orally, 100mg am and pm for a 3 week course.

I feel worse now then when I started the meds. I have looked into Herxing and maybe that is what is happening, I don't know.

You are all a great group of people and i am glad I stumbled across this forum.

A special thanks to Lymetoo and Bettyg for their help. You guys ROCK!!!

Posted by AZURE WISH (Member # 804) on :

[hi]

Welcome

Do you have a lyme literate dr?

If you still have your lyme symptoms after your three week treatment then you still need treatment because you still have lyme.

There is alot of controversy in the medical community regarding lyme... most of the drs around will only prescribe a few weeks even if the person is still sick.

It is a big battle in amongst the medical community that alot of sick people have paid dearly (and continue to pay dearly for).

Most drs do not believe in chronic lyme and will try to tell you that you dont have lyme after a few weeks of abx - that now its post lyme syndrome. (this is idsa theory)

If this happens please find a lyme literate dr so you can get the treatment you need (who follow ilads theory that chronic lyme does exist and extended treatment benificail).

Besides lyme ticks carry lots of other diseases that you could have and most of the drs around dont have a clue about them. So it is best if you can start with a llmd.

If You need help finding one, please post in seeking a dr. Include the area you are can travel to in the title. And please make sure your private message is enabled because we do not post drs info on the board so someone will pm you with info.

Best wishes

Posted by BOEJR (Member # 1734) on :

Hi Karol,

Welcome to lymenet. [hi]

You have found a great group of people here. Do you have a Lyme Literate Medical Doctor?

It's best to look for one quickly as the sooner you begin to aggresively target the infection the better your chances of recovery. Especially if you caught it early.

Kind Regards,

Julia

Posted by Karol (Member # 15831) on :

The doctor that found the Lyme is a Rheumatologist and he was looking for Lupus. He found Lyme I guess by accident.

Anyway, I am going to try to get into a LLMD asap but I can not afford to pay out of pocket. They would have to take insurance.

I am on permanent disability and funds are limited.

Thanks for the help here. This is a great group of people and your all very supportive.

Sorry, have to stop typing due to my hands. I am worse since I started the Doxy.....so much pain! [cussing]

Posted by disturbedme (Member # 12346) on :

Karol - it's going to be VERY hard to find a LLMD who takes insurance. Most, if not all, LLMD's do NOT take insurance.

Most of us have to pay out of pocket. But when it comes to health, you don't want to play around. Most of us are forced to either pay out of pocket or suffer and get sicker. And it's sad that it's come to that, but it's all part of the controversy of this disease.

Posted by madge (Member # 13704) on :

I think if your on SS Disability you can pay the Dr. then medicare will reimmburse you...but thats if the DR. takes medicare...most SS dis. people get medicare...I think!!!

Posted by Lymetoo (Member # 743) on :

Hey Karol!! Glad you found the action over here!! Bunch of great people here!!

Anyone from NJ know of a doctor who could help her??

Either one that takes Medicare or insurance.... not sure which one Karol has, but she mentioned ins.

Posted by bettyg (Member # 6147) on :

be sure to ask this question when calling for llmd appts...

has this dr. OPTED OUT OF MEDICARE?
************************************

this means the dr. will NOT send any bills to medicare!!

double bad, this means medicare does NOT SEND DENIAL TO YOUR SECONDARY INSURANCE, BCBS !!

so bcbs will NOT PAY A CENT EITHER!!
**********************************

so it's very important to ask this!

i got stung by this for $5,000 out of pocket medical and $1,000 travel expenses out of state!
************************************************

Posted by Karol (Member # 15831) on :

Medicare is my primary insurance and Blue Cross is my secondary.

If I can not find a LLMD to take insurance then I am in a heap of trouble.

Financially I just can NOT pay out of pocket.....hell I can barely buy food. [bonk]

Posted by Lymetoo (Member # 743) on :

Anybody know of a good LLMD in NJ who takes Medicare?

Posted by Karol (Member # 15831) on :

Bettyg I can not believe that happened to you. I am so sorry. That is horrible and these insurance companies really stink.

Thanks for the advice. I really appreciate it. [kiss]

Posted by sparkle7 (Member # 10397) on :

I live in NJ. My doctor is in CT... I don't have insurance. I don't think I've had insurance for about 8 years. I found it really doesn't help for the type of treatment I want in any case. It's very hard all around...

I decided to use an herbal protocol. The abx didn't seem to help me & many people have relapses. The herbal protocols aren't cheap either. It's a struggle. Everything is so expensive & I don't have disability or anything. It's really tough.

Good luck!

Posted by njgirl14 (Member # 14174) on :

Karol

Did you get Dr E's info in NJ? She may take Medicare. If you need her info PM me.

Posted by Karol (Member # 15831) on :

njgirl,

Yes, I have her info and will call Monday to set up a appointment.

SHE DOES TAKE MEDICARE!!! [woohoo]

Posted by njgirl14 (Member # 14174) on :

Karol

She's an excellent LLMD. Best of Luck.