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Posted 8/19/2009 4:38 AM (GMT 0)
smhair    I was just diagnosed 8/7/9. Got the tick bite appx 1 year ago. Just started 100 mg doxy twice daily 8/4/9. Since it's been one year undiagnosed, does anyone think the doxy dosage is too low...appt with infectious disease doctor set for 9/2/9. I am looking for responses and suggestions. My white count has been over 18 since June. I am definately worried. Just learned of a cousin who has had Lyme since 1989 - 3 years until diagnosed - severe case - she still has troubles. Also learned of another who was diagnosed in 8 months vs. my 12. She states as my cousin did that one day she woke up and could not walk. My cousin was in a wheelchair for 1 year. I am scared. I am a single mom of the most wonderful 5 yr old boy in the world who is about to start kindergarten next week. Can anyone help with info?

Post Edited (Lymeymom) : 8/18/2009 10:49:50 PM (GMT-6)

Posted 8/19/2009 7:33 AM (GMT 0)
Lymeymom

welcome to the board, i am sorry you have lyme, but its great you found it out without jumping thro hoops like so many go thro. i am no Dr. but from everything i have read you need at least 400mg to 600mg for 6 to 8 wks. for a new infection. the longer you have lyme the longer it takes to heel. and to date there is no cure for older infections that i have heard of. i so wish there was.i see your going to a ID. is he/she a LLMD ID? most ID go by outdated protocols. so if your able to go to a LLMD you should.

if you live in a place with a lot of ticks and it sounds like you do. plz watch your lil one closely. i wish you al the best. :)
Posted 8/19/2009 1:36 PM (GMT 0)
Welcome Lymeymom,
RD is right. You need to be on a higher dose of Antibiotic than that. Infectious Disease Drs. are usually not the best when it comes to treating Lyme. You can see if he/she is Lyme Literate. The ID Dr. I was referred to was basically useless. I sought out an LLMD on my own. Make sure you ask for the proper testing. Most Western Blot tests through the main labs (Quest, LabCorp., etc..), are not accurate. He also needs to test you for co-infections. You can see if he is open to Lyme treatment, if not, you need to find an LLMD near you.

I wish you all the best and congrats on your little one starting Kindergarten. I remember that day well. I was in tears, seeing my little man off at school. That was 4 years ago now. Oh, how time flies.
Posted 8/19/2009 5:01 PM (GMT 0)
Thanks to RD and Stunned for the quick responses. I am pretty 'stunned' as well with this diagnosis even though I pretty much diagnosed myself and went to regular physician. I asked for Lyme test which was positive immediately. This doc put me on current dosage of doxy and referred to ID doc - do not know if he is a LLMD. How can I find out? If he is not, can I look online to find LLMD close to me? I am in NC about 45 miles east of Charlotte. I live in a 'neighborhood' quite close to major highway but we do have deer actually come in people's yards and gardens as there is a mile or so strech of woods on the other side of the homes. I am just now reading about co-infections. Of course regular doc apparently knows little about this. I really appreciate any info I can get. I am also checking myself frequently for ticks and most certainly my little one!!!! I am also telling everyone I know to check their children and themselves thoroughly !! 
Posted 8/19/2009 6:33 PM (GMT 0)
Lymeymom

its great that your telling others to be watchful. it is hard enough for us adults to handle this, but its so much harder to see a child suffer.

i am hoping ticker will respond to your post, she can give you a lot of info on LLMDs. i do know there is a great one in SC. and wish i was close enough to see him. as stunned said IDs suck basically, i am even in the process of suing mine, as i feel he did me more harm then good. in my opinion.
Posted 8/19/2009 9:05 PM (GMT 0)
wow..good luck with the malpractice suit.
would the one in SC happen to be Dr. J? Do you know?

Post Edited By Moderator (CajunGrl) : 8/20/2009 3:26:30 AM (GMT-6)

Posted 8/20/2009 8:25 AM (GMT 0)
Lymeymom,

Welcome to the forum! You got some great advice from RD and Stunned. I agree that you should be on at least 400mg of doxy for no less than 6 weeks. At four weeks, the spirochettes comes out to reproduce so that's why it is important to stay on antibiotics longer.

If you need to find an LLMD near you, you can email one of our long time members, Ticker at:
[email protected] to find an LLMD in your area. If you'd like more suggestions, you can email: [email protected]You can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.

ILADS is also a great site to find information:
http://www.ilads.org/

For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
Posted 8/20/2009 9:24 AM (GMT 0)
i think thats his name, but i'm not for sure right now. he is the one who treated mandy in the OUS video. maybe someone else with chime in on his name. i am very bad at remebering names. so sorry.
Posted 8/26/2009 6:46 AM (GMT 0)
i have spoken to a woman locally that says she has Lymes and is being treated by Dr. J..even though he lost his NC license. She goes to see him from here to Fort Mill SC. very expensive not covered by insurance. sounds shady to me but she swears he is the one who got her back to work full time after being out 1 yr consecutive. [img]/community/emoticons/nono.gif[/img]

Post Edited By Moderator (CajunGrl) : 8/26/2009 6:04:11 AM (GMT-6)

Posted 8/26/2009 12:11 PM (GMT 0)
Lymeymom,

Hi hun. Just so you know, we don't post doctors names here out of respect for all of the wonderful doctors that go out of their way to treat us. It is okay to say, "Dr. J from Fort Mill SC", though.

Also, I've heard he is one of the best doctors there. He was on the documentary, Under Our Skin. It's a great documentary if you ever decide you want to watch it. I wish everyone would watch it.

He did lose his license for a year but there is alot going on with that, like people trying to stop these doctors from treating us long term. You can google it and read about it if you'd like. I do think he has his license back now though.
Posted 8/26/2009 10:07 PM (GMT 0)
Thanks Cajungirl...sorry I did not know protocol as a newbie...:(

I did watch the Under Our Skin video and I have found some reviews (good and bad) on Dr J. I am trying to educate myself as you all did when you got your diagnosis I guess. I've read alot and already just had a nurse tell me Friday....'we don't have Lyme here.' This is at the office of the ID I am being referred to on 9/2/9.. WHAT? Have you checked with the CDC lately lady? I know this is only the beginning. I heard there is an LLMD in Ashville NC and trying to get info. I will try to email ticker and stephanie.
Posted 8/27/2009 6:14 AM (GMT 0)
No problem hun:) We all have to learn somehow. Some people may like a doctor and others won't. That's just how life is. We choose doctors that understand us and make us feel comfortable.

A few of us were told that we don't have Lyme where we live. Myself included. Lyme is everywhere. I just wish these doctors would get more educated about it.

You will probably be better off seeing an LLMD instead of wasting your time with an ID doctor. They follow IDSA guidelines. You will probably not get anywhere with this doctor, especially if this lady is telling you that there is no Lyme there.
Posted 8/27/2009 7:47 AM (GMT 0)
Lymeymom

when i found out i had lyme, i was sent to a ID Dr. first thing he did was tell me to rule out MS, as i had 10 to 15 lesions on my brain.

so i did this, went back to the ID. he then told me i had a false possitive test. my test was possitive by CDC. as the lab who ran it turned it into the CDC and health dept. both.

i was also told there is no lyme in this part of Texas. well i'll be danged. i for one have not lived in his lil bubble either. and i told him this.LOL

still after that he ran 2 more test and sent em to different labs. the ELISA came back questionable and the other nevagite. but i have yet to get the copy of it. after asking for it a number of times.

my point is this, he ran the test to get his answers so he wouldnt have to trest me. plz dont fall into the IDs run-a-round. seek a LLMD if at all possable. this is what i am trying to do now.

i wish you all the best
Posted 8/28/2009 12:18 AM (GMT 0)
The ID run around is what I feel is coming, so yes I am looking too. The 'nurse' I talked to even patronized me, and I felt she stereotyped me immediately for some self diagnosed hypochondriac. she even advised that I not 'google' anything. I may not even have Lyme????? My case too was reported by my GP to CDC and local HD.
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