Re: Dr. G in Thous Oaks...or Dr. JH in Malibu? For 17 yr old * 3 1/2 yrs undiagnosed

[Guest guest]

Hi there --

What a long and depressing road. I really feel your pain as you tried to find

out what was wrong with your lovely, busy, bright and active son. Ugh.

First, to tell you that we pay docs out of pocket but antibiotics were mostly

covered.

Don't waste your time with the neurologist. Our pediatrician told us that our

daughter just had stretch marks because she " knew Lyme " and apparently

coinfections -- but apparently not since after antibiotics our daughter's

violence and aches and stretch marks all disappeared. So I have learned just to

move around them and not waste time arguing.

I don't know about the two you mentioned. But DR H up North is also really good

and will do phone consultations too so if you find that you are concerned about

your son's care with whoever you start with, you can always change around if you

have to.

Last, I wanted to tell you that my daughter was very much in the same boat as

your son and has lost 6 years of her childhood to this darn disease, but now

(although she is studying at home through this year, via the school and a tutor

as well as our helping her), she has more good days than bad. A few weeks ago

the Bartonella started to really flare and that set her back a bit but this week

she has gotten to volunteer at the Humane Society, see a friend, work twice with

the tutor, do homework, and plan dinner and a play tomorrow. Wow. A first in

years. So it does happen, though a year ago we seriously could not imagine ever

reaching this point.

Thinking much of you.

Warmly,

Natasha

________________________________

From: biscuitboogie <biscuitclub1@...>

Sent: Thu, January 20, 2011 3:55:54 PM

Subject: [ ] Dr. G in Thous Oaks...or Dr. JH in Malibu? For 17 yr

old * 3 1/2 yrs undiagnosed

Hello to all of you!

I just joined, as I stongly suspect my son has Lyme and I need to decide between

the two doctors for the initial consult/visit.

I live in Carpinteria CA (Santa Barbara County) and have a son who turned 17

yesterday. For 3 1/2 years we have been unable to receive a diagnosis as to what

is going on. EXTREME debilitating fatigue is the main sympton, but he has had a

lot of others,and when this hit he was also diagnosed w/ Osgood -schlotters

(sp), the swelling of the knee joint very common in that age group I was told,

now has developed OCD, depression, hasn't basically attended school in 3 yrs,

and was relegated to the " depression camp " after no dr. here could come up with

anything. I had him tested for mono and anemia right off the bat,I went from

there to a pediatric endocrinoligist several yrs ago, he's had an MRI to look

for a brain tumor, he flunked a sleep study and was misdiagnosed w/ narcolepsy,

etc. Very very frustrating. I brought up Lyme way back then, and was told it

wasn't possible.

His nuerologist will not give him antibiotics " unless he tests pos. on the

Western Blot " ....done thru quest labs! He said " cannot " actually, and I did

leave a message for them saying they should have said " WILL NOT.. " ....as he CAN.

But won't, apparently.

Although we live in So Cal, my son has flown to CT often (starting at age 5) as

that is where we are from, to visit family.

I am just learning about all of this, so need to get him to an LLMD immediately,

although it is outside of his insurance network. I will be paying for all this

out of pocket (which I am also thinking might be a good idea, although we cannot

afford it....why would I want his asinine ins. co. to know about any of this? so

they can BLACKBALL him in the future?)

At any rate, our family has almost been destroyed over this, certainly his life

came to a grinding halt 3 1/2 years ago. He was an honor student who also

competitively skated with CASL all over So cal.......when this hit, he never

skated again. He also basically never went to school again. Last mo he finally

had to switch to an alternative school here....one hr a week of going in to hand

in assignements and pick up the next. There is NO teaching going on. I am beside

myself, but hope that one of these two dr's can help me. Those are the closest

two, does anyone have any advice? Is 17 too old for pediatric (JH) or would that

be BETTER, as this started when he was 13? Is there an advantage to seeing Dr.

G, who has pulmonary knowledge?

Which one....is the query.

Any info appreciated, and you've no idea how much.

I hope I didn't break any rules by using a first initial for JH, it is my

limited understanding there may be several " H's " and wanted to make sure of whom

I'm speaking about.

Thanks to all of you, I am so impressed by the breadth of knowledge here.

~R

>^..^<

[Guest guest]

You need to go to a LLMD (Lyme Literate MD) to get a proper

diagnosis. I know Dr. Striker in SF is good. Don't know about LA or

Santa Barbara. Here are some websites that might help you find a

doc. Most important right now is get him tested correctly and use a

LLMD. IGENEX is there in CA and that is the lab 90 percent of us

use. Call them to get a price on the test.

http://www.lymedisease.org/

http://www.ilads.org/

http://www.lymediseaseassociation.org/

http://www.publichealthalert.org/

http://www.igenex.com/

Good luck,

Suzanne

On Jan 20, 2011, at 5:55 PM, biscuitboogie wrote:

> Hello to all of you!

> I just joined, as I stongly suspect my son has Lyme and I need to

> decide between the two doctors for the initial consult/visit.

> I live in Carpinteria CA (Santa Barbara County) and have a son who

> turned 17 yesterday. For 3 1/2 years we have been unable to receive

> a diagnosis as to what is going on. EXTREME debilitating fatigue is

> the main sympton, but he has had a lot of others,and when this hit

> he was also diagnosed w/ Osgood -schlotters (sp), the swelling of

> the knee joint very common in that age group I was told, now has

> developed OCD, depression, hasn't basically attended school in 3

> yrs, and was relegated to the " depression camp " after no dr. here

> could come up with anything. I had him tested for mono and anemia

> right off the bat,I went from there to a pediatric endocrinoligist

> several yrs ago, he's had an MRI to look for a brain tumor, he

> flunked a sleep study and was misdiagnosed w/ narcolepsy, etc. Very

> very frustrating. I brought up Lyme way back then, and was told it

> wasn't possible.

> His nuerologist will not give him antibiotics " unless he tests pos.

> on the Western Blot " ....done thru quest labs! He said " cannot "

> actually, and I did leave a message for them saying they should have

> said " WILL NOT.. " ....as he CAN. But won't, apparently.

> Although we live in So Cal, my son has flown to CT often (starting

> at age 5) as that is where we are from, to visit family.

> I am just learning about all of this, so need to get him to an LLMD

> immediately, although it is outside of his insurance network. I will

> be paying for all this out of pocket (which I am also thinking might

> be a good idea, although we cannot afford it....why would I want his

> asinine ins. co. to know about any of this? so they can BLACKBALL

> him in the future?)

> At any rate, our family has almost been destroyed over this,

> certainly his life came to a grinding halt 3 1/2 years ago. He was

> an honor student who also competitively skated with CASL all over So

> cal.......when this hit, he never skated again. He also basically

> never went to school again. Last mo he finally had to switch to an

> alternative school here....one hr a week of going in to hand in

> assignements and pick up the next. There is NO teaching going on. I

> am beside myself, but hope that one of these two dr's can help me.

> Those are the closest two, does anyone have any advice? Is 17 too

> old for pediatric (JH) or would that be BETTER, as this started when

> he was 13? Is there an advantage to seeing Dr. G, who has pulmonary

> knowledge?

> Which one....is the query.

> Any info appreciated, and you've no idea how much.

> I hope I didn't break any rules by using a first initial for JH, it

> is my limited understanding there may be several " H's " and wanted to

> make sure of whom I'm speaking about.

> Thanks to all of you, I am so impressed by the breadth of knowledge

> here.

> ~R

> >^..^<

>

>

>

[Guest guest]

MDJunction's Lyme group is also very helpful. If you private message the

moderator Betty G she will send you LLMD names that have been recommended by

others on their list.

>

> > Hello to all of you!

> > I just joined, as I stongly suspect my son has Lyme and I need to

> > decide between the two doctors for the initial consult/visit.

> > I live in Carpinteria CA (Santa Barbara County) and have a son who

> > turned 17 yesterday. For 3 1/2 years we have been unable to receive

> > a diagnosis as to what is going on. EXTREME debilitating fatigue is

> > the main sympton, but he has had a lot of others,and when this hit

> > he was also diagnosed w/ Osgood -schlotters (sp), the swelling of

> > the knee joint very common in that age group I was told, now has

> > developed OCD, depression, hasn't basically attended school in 3

> > yrs, and was relegated to the " depression camp " after no dr. here

> > could come up with anything. I had him tested for mono and anemia

> > right off the bat,I went from there to a pediatric endocrinoligist

> > several yrs ago, he's had an MRI to look for a brain tumor, he

> > flunked a sleep study and was misdiagnosed w/ narcolepsy, etc. Very

> > very frustrating. I brought up Lyme way back then, and was told it

> > wasn't possible.

> > His nuerologist will not give him antibiotics " unless he tests pos.

> > on the Western Blot " ....done thru quest labs! He said " cannot "

> > actually, and I did leave a message for them saying they should have

> > said " WILL NOT.. " ....as he CAN. But won't, apparently.

> > Although we live in So Cal, my son has flown to CT often (starting

> > at age 5) as that is where we are from, to visit family.

> > I am just learning about all of this, so need to get him to an LLMD

> > immediately, although it is outside of his insurance network. I will

> > be paying for all this out of pocket (which I am also thinking might

> > be a good idea, although we cannot afford it....why would I want his

> > asinine ins. co. to know about any of this? so they can BLACKBALL

> > him in the future?)

> > At any rate, our family has almost been destroyed over this,

> > certainly his life came to a grinding halt 3 1/2 years ago. He was

> > an honor student who also competitively skated with CASL all over So

> > cal.......when this hit, he never skated again. He also basically

> > never went to school again. Last mo he finally had to switch to an

> > alternative school here....one hr a week of going in to hand in

> > assignements and pick up the next. There is NO teaching going on. I

> > am beside myself, but hope that one of these two dr's can help me.

> > Those are the closest two, does anyone have any advice? Is 17 too

> > old for pediatric (JH) or would that be BETTER, as this started when

> > he was 13? Is there an advantage to seeing Dr. G, who has pulmonary

> > knowledge?

> > Which one....is the query.

> > Any info appreciated, and you've no idea how much.

> > I hope I didn't break any rules by using a first initial for JH, it

> > is my limited understanding there may be several " H's " and wanted to

> > make sure of whom I'm speaking about.

> > Thanks to all of you, I am so impressed by the breadth of knowledge

> > here.

> > ~R

> > >^..^<

> >

> >

> >

>

>

>

>