Re: response to new member

Posted March 10, 2010 · March 10, 2010

Dear Mildred,

I would strongly recommend you see a LLMD ( " lyme literate MD " ) and

maybe a knowledgeable alternative doctor for supportive treatment.

Some do both. Tell us where you are and someone may be able to

recommend a doctor. I spent 6 months going from specialist to

specialist for my daughter before deciding to go outside my

insurance and mainstream referrals.

My daughter (also 11) saw a couple infectious disease doctors after

she got worse following her initial antibiotic treatment. They could

not accept that she still had lyme since she had already been

" appropriately " treated and didn't have any neural deficits or muscle

weakness. They are bound by the CDC guidelines, which are very narrow

(a whole other can of worms), whether it is treatment length or

diagnosis.

There have recently been a few posts regarding psychological

symptoms, so she's not alone. I'm sure someone will have advice on

that front.

Good luck,

Aviva

On Mar 10, 2010, at 11:48 AM, Mildred Reagle wrote:

> This is the first time I am posting to this group. i just joined a

> couple of weeks ago.

>

> My daughter is 11 years old and was diagnosed with lyme in

> August 2009. We believe she was showing symptoms starting in

> November 2008 but had no bulls eye. Her doctors could not figure

> out what was wrong with her and resisted testing her for lyme (not

> sure why). I had to insist she be tested, which she was in feb

> 2009 and then again in August 2009. We only got the positive test

> for lyme in August 2009. I wish I knew then what I know now or we

> would have been seeing specialists back in 2008.

>

> She has been sick off and on (fevers, joint pain, headaches, etc).

> But the moody behaviors and the OCD are persisting. Her

> psychologist wants her to take anti-anxiety meds but I'm on the fence.

>

> I feel like there is so much more to learn about this disease. I

> am very frustrated. When I asked her doctors if the OCD and moody

> behaviors could be related to the lyme they didn't really address

> the issue and I felt put off. We have started seeing an infectious

> disease doctor not a lyme specialist. I'm never sure we are doing

> the right thing for our daughter.

>

> It helps to read what others are going though. Thank you for sharing.

>

> ________________________________

> From: Natasha Moiseyev <nmoiseyev@...>

>

> Sent: Wed, March 10, 2010 9:51:14 AM

> Subject: Re: [ ] rashes

>

> definitely longer to treat the neuropsych stuff, as I am coming to

> find out with my younger daughter. Might he have coinfections? We

> just saw our LLMD and he said my daughter's Lyme symptoms have

> subsided (for now -- retrenching? gone cystic?) but the Bartonella

> is kicking up a huge fight.

>

> Natasha

>

> From: jchabot <jchabotsnet (DOT) net>

> Subject: [ ] rashes

>

> Date: Wednesday, March 10, 2010, 5:13 AM

>

> Hello,

>

> My son has been on antibotics for 5 months now for lyme. He never

> had the bullseye rash. He had little sporadic patches of rashes

> that erupted all over his body. Well, the rashes went away a few

> weeks into the treatment and are now back.

>

> Does anyone have any insight into this? His fatigue has gone away,

> as well as his headaches and leg pains, but still is very moody and

> has lots of " ocd bad thoughts "

>

> I'm guessing it takes longer to cure the neuropsychiatric symptoms

> than the physical?

>

> thanks

>

> Judy

>

Posted March 10, 2010 · March 10, 2010

We are located in Frederick, land. We have been traveling to Leesburg, VA

to the infectious disease doctor. Any referrals would be helpful. Thank you!

________________________________

From: Aviva Gerson <avivag@...>

Sent: Wed, March 10, 2010 1:17:04 PM

Subject: Re: [ ] response to new member