Re: Bransfield-Lyme Depression

[Guest guest]

My daughter lived with a CFS dx for 12 years before we realized it was

Lyme and I worked with a doctor who treated thousands of kids and did

research with him, as well as a book for parents. And all to learn it

was really Lyme...I agree with that attitude of it just being

mental....Infuriating. When my daughter couldn't walk our doctor made an

emergency consult with the head of pediatric neurology in a children's

hospital near us. He examined her and said, " It is all in her head. " My

son, also ill as a youth, after seeing an infectious disease specialist

disappeared for in the house. I found him curled up in a ball hiding in

the linen closet. Our kids shouldn't EVER have to endure this kind of

treatment.

I printed some of Dr. Bransfields articles for the educational

consultant who evaluated our daughter. We were very lucky to have a

local child psychologist who believed she was ill and was wonderful.

Good luck,

On 3/2/2011 11:25 AM, Diane Biel wrote:

>

> Thanks so much!! I would really like to give something to my oldest

> daughters

> psychiatrist as the last time we were there my daughter was in a como

> sleep

> phase and this doctor told her it was just a mental thing - she should

> go out

> and exercise for 20 minuets and tell herself she wasn't tired - then

> she would

> be fine..........so frustrating........she told me she knows about CFS

> so its a

> mental thing........makes me so mad that they treat us like

> this..............I

> wish it was just a mental way of thinking.......I would weigh 115lbs

> and have an

> awesome paying job and my kids would be in school every day and life

> would

> GRAND........life would be good.

> Diane

>

> ________________________________

> From: Faces <faces@... <mailto:faces%40rochester.rr.com>>

>

> <mailto: %40>

> Sent: Wed, March 2, 2011 10:20:54 AM

> Subject: Re: [ ] Buhner-Lyme Depression

>

>

> I googled. Dr. Bransfield lyme psychiatrist and many links came up. Here

> is the link to the ILADS page on him

> http://www.ilads.org/about_ILADS/officers_directors.html#page=page-1

> <cid:part1.02010504.07090003@...

> <mailto:part1.02010504.07090003%40rochester.rr.com>> and here is one

> that has

> a list of published articles he has written on lyme and the psychiatric

> effects http://www.mentalhealthandillness.com/lymeArticles.htm

> <cid:part2.09030408.08070701@...

> <mailto:part2.09030408.08070701%40rochester.rr.com>> There are many lyme

> associations and sites that also have bios and articles of his.

>

> He is very knowledgable and I have learned alot from him on the

> psychiatric and cognitive issues related to these infections.

>

> Good luck,

>

>

>

> On 3/2/2011 10:59 AM, Diane Biel wrote:

> >

> > I am sorry but where can I find this on-line...........thanks

> > Diane

> >

> > ________________________________

> > From: Farhangi <lesliefarhangi@...

> <mailto:lesliefarhangi%40gmail.com>

> > <mailto:lesliefarhangi%40gmail.com>>

> >

> <mailto: %40>

> > <mailto: %40>

> > Sent: Wed, March 2, 2011 9:10:11 AM

> > Subject: Re: [ ] Buhner-Lyme Depression

> >

> > Thank you, this is what I was asking!

> >

> >

> >

> > On Wed, Mar 2, 2011 at 10:05 AM, Faces <faces@...

> <mailto:faces%40rochester.rr.com>

> > <mailto:faces%40rochester.rr.com>> wrote:

> >

> > >

> > >

> > > ,

> > >

> > > I think you were asking who Dr. Bransfield is.

> > >

> > > **Dr. Bransfield is a lyme literate psychiatrist from NJ

> that has

> > > an interest in lyme and other tick born illnesses that effect the

> brain.

> > > I was on an email list with him a few years ago, and his knowledge and

> > > understanding of these illnesses was vastly impressive. He has

> written a

> > > great deal on the topic and is speaking in April in PA at the LDA

> of PA.

> > > You can find his articles on line.

> > >

> > >

> > >

> > > On 3/1/2011 9:23 PM, Farhangi wrote:

> > > > What is number 3, " Brainsfield " ? My son has long term lyme and among

> > > other

> > > > things, symptoms of ADHD.

> > > >

> > > > Thanks,

> > > >

> > > >

> > >

> > >

[Guest guest]

Dr. Bransfield treated my daughter for a few years. He did a detailed symptom

assessment & then he prescribed medications to treat some of the most

debilitating symptoms (in addition to the abx from her LLMD). He was very much

in favor of treating lyme-related depression, ADD, anxiety, etc with psychiatric

drugs. He also helped us address school stuff- if they tried to call her

problems psychiatric, we'd let them know what her psychiatrist had to say.

Knowing that she was under the care of a psychiatrist and that he didn't think

her problems were " all emotional " was reassuring to the non LLMD doctors that

treated other issues (her neurologist, sleep doctor, immunology, etc.) as well.

It's been several years, but his fees were reasonable. The initial appointment

was not as pricey as a lot of lyme docs. It was a long drive to his office, but

he was willing to have monthly phone appointments between our yearly visits. The

phone appointments were typically 20 minutes or so & very reasonable in cost.

Sue

-

[Guest guest]

This is so helpful to me, as my son has cognitive issues and we are having

our second neurologist appointment next week.

Please tell me your daughter got better!

LEslie

On Wed, Mar 2, 2011 at 1:51 PM, smd <merrymom1013@...> wrote:

>

>

> Dr. Bransfield treated my daughter for a few years. He did a detailed

> symptom assessment & then he prescribed medications to treat some of the

> most debilitating symptoms (in addition to the abx from her LLMD). He was

> very much in favor of treating lyme-related depression, ADD, anxiety, etc

> with psychiatric drugs. He also helped us address school stuff- if they

> tried to call her problems psychiatric, we'd let them know what her

> psychiatrist had to say.

> Knowing that she was under the care of a psychiatrist and that he didn't

> think her problems were " all emotional " was reassuring to the non LLMD

> doctors that treated other issues (her neurologist, sleep doctor,

> immunology, etc.) as well.

> It's been several years, but his fees were reasonable. The initial

> appointment was not as pricey as a lot of lyme docs. It was a long drive to

> his office, but he was willing to have monthly phone appointments between

> our yearly visits. The phone appointments were typically 20 minutes or so &

> very reasonable in cost.

> Sue

>

> -

>

>

[Guest guest]

She did get better, which is why I rarely post here anymore. Her LLMD ended

treatment after about 5 years of abx (which is about how long he told us it

would take to get her better). She was left with narcolepsy- which is autoimmune

& all her doctors agree was triggered by the Lyme. Recovering from the Lyme made

it easier to treat the narcolepsy symptoms. The Lyme left a number of scars-

physical, emotional & financial- mostly on her, but on our whole family. Things

will never be totally wonderful, but compared to where she was, they are

awesome. She has a few other health issues in addition to the narcolepsy- we

call them her Lyme souvenirs. But she is away at college, has a driver's

license, a great boyfriend and many good things in her life.

After missing more than 3 years of school and dealing with all of the struggles

you all talk about here, she graduated on time & did super on her SATs, so she

had a number of scholarship offers. When she was sickest, she needed an hour to

write a sentence or two and couldn't do simple math. When better, she got almost

a 760/800 writing score on the SATs and thought calculus was fun. Don't lose

hope.

Sue

[Guest guest]

Bless you Sue and thank you soooo very much for the hope that one day my three

girls will also be able to live a " normal " life

Diane

________________________________

From: smd <merrymom1013@...>

< >

Sent: Wed, March 2, 2011 1:44:37 PM

Subject: Re: [ ] Bransfield-Lyme Depression

 

She did get better, which is why I rarely post here anymore. Her LLMD ended

treatment after about 5 years of abx (which is about how long he told us it

would take to get her better). She was left with narcolepsy- which is autoimmune

& all her doctors agree was triggered by the Lyme. Recovering from the Lyme made

it easier to treat the narcolepsy symptoms. The Lyme left a number of scars-

physical, emotional & financial- mostly on her, but on our whole family. Things

will never be totally wonderful, but compared to where she was, they are

awesome. She has a few other health issues in addition to the narcolepsy- we

call them her Lyme souvenirs. But she is away at college, has a driver's

license, a great boyfriend and many good things in her life.

After missing more than 3 years of school and dealing with all of the struggles

you all talk about here, she graduated on time & did super on her SATs, so she

had a number of scholarship offers. When she was sickest, she needed an hour to

write a sentence or two and couldn't do simple math. When better, she got almost

a 760/800 writing score on the SATs and thought calculus was fun. Don't lose

hope.

Sue

[Guest guest]

Oh my god, thank you for this. My son is struggling at school, has had

neuropsych testing and we are seeing a neurologist. The neurologist said

he's never seen someone w/my son's profile -- he tests as very intelligent

but his brain processing speed is incredibly slow. His MRI shows two brain

lesions the neurologist believes are due to lyme inflammation.

We took my son off antibiotics two weeks ago (after 5 months on) b/c there

really wasn't improvement (our LLMD thought it was OK).

My worst fear is that he won't get any better at all . . . and if he can't

handle sixth grade, how will he handle any higher grade. But I tell myself

he's a kid, and still growing, and perhaps he can heal somewhat, if not

completely.

On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

>

>

> She did get better, which is why I rarely post here anymore. Her LLMD ended

> treatment after about 5 years of abx (which is about how long he told us it

> would take to get her better). She was left with narcolepsy- which is

> autoimmune & all her doctors agree was triggered by the Lyme. Recovering

> from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme left

> a number of scars- physical, emotional & financial- mostly on her, but on

> our whole family. Things will never be totally wonderful, but compared to

> where she was, they are awesome. She has a few other health issues in

> addition to the narcolepsy- we call them her Lyme souvenirs. But she is away

> at college, has a driver's license, a great boyfriend and many good things

> in her life.

> After missing more than 3 years of school and dealing with all of the

> struggles you all talk about here, she graduated on time & did super on her

> SATs, so she had a number of scholarship offers. When she was sickest, she

> needed an hour to write a sentence or two and couldn't do simple math. When

> better, she got almost a 760/800 writing score on the SATs and thought

> calculus was fun. Don't lose hope.

> Sue

>

>

[Guest guest]

Just my thought on this......even with my treatment after five months of abx - I

did not see very much improvement and now kind of back slid - but you have to

stay on abx long term........that is what wins the race........does you llmd

treat alot of kids?  Are they treating co-infections......I would not take my

child off of abx......sorry that is just my feeling....my girls had to go off

due to outside reasons and they slowly went down and now are back into it and it

is harder this time around......please think about this......I am sorry if I am

way off but this is what I feel -

bless you - Diane

________________________________

From: Farhangi <lesliefarhangi@...>

Sent: Wed, March 2, 2011 1:49:06 PM

Subject: Re: [ ] Bransfield-Lyme Depression

Oh my god, thank you for this.  My son is struggling at school, has had

neuropsych testing and we are seeing a neurologist.  The neurologist said

he's never seen someone w/my son's profile -- he tests as very intelligent

but his brain processing speed is incredibly slow.  His MRI shows two brain

lesions the neurologist believes are due to lyme inflammation.

We took my son off antibiotics two weeks ago (after 5 months on) b/c there

really wasn't improvement (our LLMD thought it was OK).

My worst fear is that he won't get any better at all . . . and if he can't

handle sixth grade, how will he handle any higher grade.  But I tell myself

he's a kid, and still growing, and perhaps he can heal somewhat, if not

completely.

On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

>

>

> She did get better, which is why I rarely post here anymore. Her LLMD ended

> treatment after about 5 years of abx (which is about how long he told us it

> would take to get her better). She was left with narcolepsy- which is

> autoimmune & all her doctors agree was triggered by the Lyme. Recovering

> from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme left

> a number of scars- physical, emotional & financial- mostly on her, but on

> our whole family. Things will never be totally wonderful, but compared to

> where she was, they are awesome. She has a few other health issues in

> addition to the narcolepsy- we call them her Lyme souvenirs. But she is away

> at college, has a driver's license, a great boyfriend and many good things

> in her life.

> After missing more than 3 years of school and dealing with all of the

> struggles you all talk about here, she graduated on time & did super on her

> SATs, so she had a number of scholarship offers. When she was sickest, she

> needed an hour to write a sentence or two and couldn't do simple math. When

> better, she got almost a 760/800 writing score on the SATs and thought

> calculus was fun. Don't lose hope.

> Sue

>

>

[Guest guest]

Yes, my LLMD treats a lot of kids; my son's been tested for coinfections and

luckily has none. He also has gastritis that sent us to the emergency room

yesterday, so antibiotics that are tough on the stomach are out of the

question at the moment.

After our neurologist appt we'll see the LLMD and get his take. Our LLMD is

on the ILADS committee that wrote up their treatment guidelines, I am very

confident he is a great doctor.

On Wed, Mar 2, 2011 at 2:52 PM, Diane Biel <dkbmama@...> wrote:

>

>

> Just my thought on this......even with my treatment after five months of

> abx - I

> did not see very much improvement and now kind of back slid - but you have

> to

> stay on abx long term........that is what wins the race........does you

> llmd

> treat alot of kids? Are they treating co-infections......I would not take

> my

> child off of abx......sorry that is just my feeling....my girls had to go

> off

> due to outside reasons and they slowly went down and now are back into it

> and it

> is harder this time around......please think about this......I am sorry if

> I am

> way off but this is what I feel -

>

> bless you - Diane

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Wed, March 2, 2011 1:49:06 PM

>

> Subject: Re: [ ] Bransfield-Lyme Depression

>

> Oh my god, thank you for this. My son is struggling at school, has had

> neuropsych testing and we are seeing a neurologist. The neurologist said

> he's never seen someone w/my son's profile -- he tests as very intelligent

> but his brain processing speed is incredibly slow. His MRI shows two brain

> lesions the neurologist believes are due to lyme inflammation.

>

> We took my son off antibiotics two weeks ago (after 5 months on) b/c there

> really wasn't improvement (our LLMD thought it was OK).

>

> My worst fear is that he won't get any better at all . . . and if he can't

> handle sixth grade, how will he handle any higher grade. But I tell myself

> he's a kid, and still growing, and perhaps he can heal somewhat, if not

> completely.

>

>

>

> On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

>

> >

> >

> > She did get better, which is why I rarely post here anymore. Her LLMD

> ended

> > treatment after about 5 years of abx (which is about how long he told us

> it

> > would take to get her better). She was left with narcolepsy- which is

> > autoimmune & all her doctors agree was triggered by the Lyme. Recovering

> > from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme

> left

> > a number of scars- physical, emotional & financial- mostly on her, but on

> > our whole family. Things will never be totally wonderful, but compared to

> > where she was, they are awesome. She has a few other health issues in

> > addition to the narcolepsy- we call them her Lyme souvenirs. But she is

> away

> > at college, has a driver's license, a great boyfriend and many good

> things

> > in her life.

> > After missing more than 3 years of school and dealing with all of the

> > struggles you all talk about here, she graduated on time & did super on

> her

> > SATs, so she had a number of scholarship offers. When she was sickest,

> she

> > needed an hour to write a sentence or two and couldn't do simple math.

> When

> > better, she got almost a 760/800 writing score on the SATs and thought

> > calculus was fun. Don't lose hope.

> > Sue

> >

> >

[Guest guest]

Please know I didnt mean to question your llmd......I just wish we didnt have to

have sick children....and it scares me that every move we make might help or

hurt them.......I am sure you are doing the best for him.....my oldest has IBS

that sends her to the ER.......I am just so sorry.....my oldest was also just in

the er for eye inflammation last week - she also get the swollen knee and a

month ago an ankle........I just get scared with the thought of the lyme

bacteria gaining again..........

Please know I just wrote to say what I felt - but nothing against you or your

llmd - did they consider IV abx - that way it doesn't have to be digested in the

stomic at all.......

Diane

________________________________

From: Farhangi <lesliefarhangi@...>

Sent: Wed, March 2, 2011 1:55:48 PM

Subject: Re: [ ] Bransfield-Lyme Depression

Yes, my LLMD treats a lot of kids; my son's been tested for coinfections and

luckily has none.  He also has gastritis that sent us to the emergency room

yesterday, so antibiotics that are tough on the stomach are out of the

question at the moment.

After our neurologist appt we'll see the LLMD and get his take.  Our LLMD is

on the ILADS committee that wrote up their treatment guidelines, I am very

confident he is a great doctor.

On Wed, Mar 2, 2011 at 2:52 PM, Diane Biel <dkbmama@...> wrote:

>

>

> Just my thought on this......even with my treatment after five months of

> abx - I

> did not see very much improvement and now kind of back slid - but you have

> to

> stay on abx long term........that is what wins the race........does you

> llmd

> treat alot of kids?  Are they treating co-infections......I would not take

> my

> child off of abx......sorry that is just my feeling....my girls had to go

> off

> due to outside reasons and they slowly went down and now are back into it

> and it

> is harder this time around......please think about this......I am sorry if

> I am

> way off but this is what I feel -

>

> bless you - Diane

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Wed, March 2, 2011 1:49:06 PM

>

> Subject: Re: [ ] Bransfield-Lyme Depression

>

> Oh my god, thank you for this.  My son is struggling at school, has had

> neuropsych testing and we are seeing a neurologist.  The neurologist said

> he's never seen someone w/my son's profile -- he tests as very intelligent

> but his brain processing speed is incredibly slow.  His MRI shows two brain

> lesions the neurologist believes are due to lyme inflammation.

>

> We took my son off antibiotics two weeks ago (after 5 months on) b/c there

> really wasn't improvement (our LLMD thought it was OK).

>

> My worst fear is that he won't get any better at all . . . and if he can't

> handle sixth grade, how will he handle any higher grade.  But I tell myself

> he's a kid, and still growing, and perhaps he can heal somewhat, if not

> completely.

>

>

>

> On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

>

> >

> >

> > She did get better, which is why I rarely post here anymore. Her LLMD

> ended

> > treatment after about 5 years of abx (which is about how long he told us

> it

> > would take to get her better). She was left with narcolepsy- which is

> > autoimmune & all her doctors agree was triggered by the Lyme. Recovering

> > from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme

> left

> > a number of scars- physical, emotional & financial- mostly on her, but on

> > our whole family. Things will never be totally wonderful, but compared to

> > where she was, they are awesome. She has a few other health issues in

> > addition to the narcolepsy- we call them her Lyme souvenirs. But she is

> away

> > at college, has a driver's license, a great boyfriend and many good

> things

> > in her life.

> > After missing more than 3 years of school and dealing with all of the

> > struggles you all talk about here, she graduated on time & did super on

> her

> > SATs, so she had a number of scholarship offers. When she was sickest,

> she

> > needed an hour to write a sentence or two and couldn't do simple math.

> When

> > better, she got almost a 760/800 writing score on the SATs and thought

> > calculus was fun. Don't lose hope.

> > Sue

> >

> >

[Guest guest]

No offense taken, no worries! Agree, it is better to have all thoughts on

an issue.

My son did have a month of IV antibiotics, the picc line had to be removed

b/c it got infected. He also couldn't tolerate rocephin, so was put on IV

zithromax, and my LLMD thought that there wasn't that much more benefit to

IV zith vs. oral zith.

My son had eye inflammation as well (episcleritis) and his eye doctor said

it can be caused by lyme . . . or it is idiopathic.

Also agree, HATE this rollercoaster. But, I tell myself it cannot last

forever. This situation WILL change.

Good luck to you too!

On Wed, Mar 2, 2011 at 3:03 PM, Diane Biel <dkbmama@...> wrote:

>

>

> Please know I didnt mean to question your llmd......I just wish we didnt

> have to

> have sick children....and it scares me that every move we make might help

> or

> hurt them.......I am sure you are doing the best for him.....my oldest has

> IBS

> that sends her to the ER.......I am just so sorry.....my oldest was also

> just in

> the er for eye inflammation last week - she also get the swollen knee and a

>

> month ago an ankle........I just get scared with the thought of the lyme

> bacteria gaining again..........

> Please know I just wrote to say what I felt - but nothing against you or

> your

> llmd - did they consider IV abx - that way it doesn't have to be digested

> in the

> stomic at all.......

>

> Diane

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Wed, March 2, 2011 1:55:48 PM

>

> Subject: Re: [ ] Bransfield-Lyme Depression

>

> Yes, my LLMD treats a lot of kids; my son's been tested for coinfections

> and

> luckily has none. He also has gastritis that sent us to the emergency room

> yesterday, so antibiotics that are tough on the stomach are out of the

> question at the moment.

>

> After our neurologist appt we'll see the LLMD and get his take. Our LLMD

> is

> on the ILADS committee that wrote up their treatment guidelines, I am very

> confident he is a great doctor.

>

>

>

> On Wed, Mar 2, 2011 at 2:52 PM, Diane Biel <dkbmama@...> wrote:

>

> >

> >

> > Just my thought on this......even with my treatment after five months of

> > abx - I

> > did not see very much improvement and now kind of back slid - but you

> have

> > to

> > stay on abx long term........that is what wins the race........does you

> > llmd

> > treat alot of kids? Are they treating co-infections......I would not

> take

> > my

> > child off of abx......sorry that is just my feeling....my girls had to go

> > off

> > due to outside reasons and they slowly went down and now are back into it

> > and it

> > is harder this time around......please think about this......I am sorry

> if

> > I am

> > way off but this is what I feel -

> >

> > bless you - Diane

> >

> > ________________________________

> > From: Farhangi <lesliefarhangi@...>

> >

> > Sent: Wed, March 2, 2011 1:49:06 PM

> >

> > Subject: Re: [ ] Bransfield-Lyme Depression

> >

> > Oh my god, thank you for this. My son is struggling at school, has had

> > neuropsych testing and we are seeing a neurologist. The neurologist said

> > he's never seen someone w/my son's profile -- he tests as very

> intelligent

> > but his brain processing speed is incredibly slow. His MRI shows two

> brain

> > lesions the neurologist believes are due to lyme inflammation.

> >

> > We took my son off antibiotics two weeks ago (after 5 months on) b/c

> there

> > really wasn't improvement (our LLMD thought it was OK).

> >

> > My worst fear is that he won't get any better at all . . . and if he

> can't

> > handle sixth grade, how will he handle any higher grade. But I tell

> myself

> > he's a kid, and still growing, and perhaps he can heal somewhat, if not

> > completely.

> >

> >

> >

> > On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

> >

> > >

> > >

> > > She did get better, which is why I rarely post here anymore. Her LLMD

> > ended

> > > treatment after about 5 years of abx (which is about how long he told

> us

> > it

> > > would take to get her better). She was left with narcolepsy- which is

> > > autoimmune & all her doctors agree was triggered by the Lyme.

> Recovering

> > > from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme

> > left

> > > a number of scars- physical, emotional & financial- mostly on her, but

> on

> > > our whole family. Things will never be totally wonderful, but compared

> to

> > > where she was, they are awesome. She has a few other health issues in

> > > addition to the narcolepsy- we call them her Lyme souvenirs. But she is

> > away

> > > at college, has a driver's license, a great boyfriend and many good

> > things

> > > in her life.

> > > After missing more than 3 years of school and dealing with all of the

> > > struggles you all talk about here, she graduated on time & did super on

> > her

> > > SATs, so she had a number of scholarship offers. When she was sickest,

> > she

> > > needed an hour to write a sentence or two and couldn't do simple math.

> > When

> > > better, she got almost a 760/800 writing score on the SATs and thought

> > > calculus was fun. Don't lose hope.

> > > Sue

> > >

> > >

[Guest guest]

Bless you - you are an awesome person and mother!

What did they do for your sons eye inflammation?  Our eye doctor and er doctor

think we are out of our minds - the er doc said she must of injured it

somehow......right......and the eye doc is up in the air as to what happened -

and it acts up on and off - the er doc put her on abx ointment - not sure if

that helped or not and the eye doc put her on a steroid thinking maybe it was

an allergy - she has not taken the steroid as of yet - but not sure what to do

if it happens again - so much pain.  The eye doc also told her to use over the

counter eye drops for dry eye. 

thanks again

diane

Sounds like you have many knowledgeable doctors that work with you - most of our

medical doctors we cant even bring up lyme or they make us leave.........crazy

docs!!

________________________________

From: Farhangi <lesliefarhangi@...>

Sent: Wed, March 2, 2011 2:16:03 PM

Subject: Re: [ ] Bransfield-Lyme Depression

No offense taken, no worries!  Agree, it is better to have all thoughts on

an issue.

My son did have a month of IV antibiotics, the picc line had to be removed

b/c it got infected.  He also couldn't tolerate rocephin, so was put on IV

zithromax, and my LLMD thought that there wasn't that much more benefit to

IV zith vs. oral zith.

My son had eye inflammation as well (episcleritis) and his eye doctor said

it can be caused by lyme . . . or it is idiopathic.

Also agree, HATE this rollercoaster.  But, I tell myself it cannot last

forever.  This situation WILL change.

Good luck to you too!

On Wed, Mar 2, 2011 at 3:03 PM, Diane Biel <dkbmama@...> wrote:

>

>

> Please know I didnt mean to question your llmd......I just wish we didnt

> have to

> have sick children....and it scares me that every move we make might help

> or

> hurt them.......I am sure you are doing the best for him.....my oldest has

> IBS

> that sends her to the ER.......I am just so sorry.....my oldest was also

> just in

> the er for eye inflammation last week - she also get the swollen knee and a

>

> month ago an ankle........I just get scared with the thought of the lyme

> bacteria gaining again..........

> Please know I just wrote to say what I felt - but nothing against you or

> your

> llmd - did they consider IV abx - that way it doesn't have to be digested

> in the

> stomic at all.......

>

> Diane

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Wed, March 2, 2011 1:55:48 PM

>

> Subject: Re: [ ] Bransfield-Lyme Depression

>

> Yes, my LLMD treats a lot of kids; my son's been tested for coinfections

> and

> luckily has none.  He also has gastritis that sent us to the emergency room

> yesterday, so antibiotics that are tough on the stomach are out of the

> question at the moment.

>

> After our neurologist appt we'll see the LLMD and get his take.  Our LLMD

> is

> on the ILADS committee that wrote up their treatment guidelines, I am very

> confident he is a great doctor.

>

>

>

> On Wed, Mar 2, 2011 at 2:52 PM, Diane Biel <dkbmama@...> wrote:

>

> >

> >

> > Just my thought on this......even with my treatment after five months of

> > abx - I

> > did not see very much improvement and now kind of back slid - but you

> have

> > to

> > stay on abx long term........that is what wins the race........does you

> > llmd

> > treat alot of kids?  Are they treating co-infections......I would not

> take

> > my

> > child off of abx......sorry that is just my feeling....my girls had to go

> > off

> > due to outside reasons and they slowly went down and now are back into it

> > and it

> > is harder this time around......please think about this......I am sorry

> if

> > I am

> > way off but this is what I feel -

> >

> > bless you - Diane

> >

> > ________________________________

> > From: Farhangi <lesliefarhangi@...>

> >

> > Sent: Wed, March 2, 2011 1:49:06 PM

> >

> > Subject: Re: [ ] Bransfield-Lyme Depression

> >

> > Oh my god, thank you for this.  My son is struggling at school, has had

> > neuropsych testing and we are seeing a neurologist.  The neurologist said

> > he's never seen someone w/my son's profile -- he tests as very

> intelligent

> > but his brain processing speed is incredibly slow.  His MRI shows two

> brain

> > lesions the neurologist believes are due to lyme inflammation.

> >

> > We took my son off antibiotics two weeks ago (after 5 months on) b/c

> there

> > really wasn't improvement (our LLMD thought it was OK).

> >

> > My worst fear is that he won't get any better at all . . . and if he

> can't

> > handle sixth grade, how will he handle any higher grade.  But I tell

> myself

> > he's a kid, and still growing, and perhaps he can heal somewhat, if not

> > completely.

> >

> >

> >

> > On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

> >

> > >

> > >

> > > She did get better, which is why I rarely post here anymore. Her LLMD

> > ended

> > > treatment after about 5 years of abx (which is about how long he told

> us

> > it

> > > would take to get her better). She was left with narcolepsy- which is

> > > autoimmune & all her doctors agree was triggered by the Lyme.

> Recovering

> > > from the Lyme made it easier to treat the narcolepsy symptoms. The Lyme

> > left

> > > a number of scars- physical, emotional & financial- mostly on her, but

> on

> > > our whole family. Things will never be totally wonderful, but compared

> to

> > > where she was, they are awesome. She has a few other health issues in

> > > addition to the narcolepsy- we call them her Lyme souvenirs. But she is

> > away

> > > at college, has a driver's license, a great boyfriend and many good

> > things

> > > in her life.

> > > After missing more than 3 years of school and dealing with all of the

> > > struggles you all talk about here, she graduated on time & did super on

> > her

> > > SATs, so she had a number of scholarship offers. When she was sickest,

> > she

> > > needed an hour to write a sentence or two and couldn't do simple math.

> > When

> > > better, she got almost a 760/800 writing score on the SATs and thought

> > > calculus was fun. Don't lose hope.

> > > Sue

> > >

> > >

[Guest guest]

The eye doctor put him on steroid eye drops and they cleared it up. His

eyes looked like he had conjunctivitis -- very red, but no discharge, not

itchy, but painful.

On Wed, Mar 2, 2011 at 3:23 PM, Diane Biel <dkbmama@...> wrote:

>

>

> Bless you - you are an awesome person and mother!

> What did they do for your sons eye inflammation? Our eye doctor and er

> doctor

> think we are out of our minds - the er doc said she must of injured it

> somehow......right......and the eye doc is up in the air as to what

> happened -

> and it acts up on and off - the er doc put her on abx ointment - not sure

> if

> that helped or not and the eye doc put her on a steroid thinking maybe it

> was

> an allergy - she has not taken the steroid as of yet - but not sure what to

> do

> if it happens again - so much pain. The eye doc also told her to use over

> the

> counter eye drops for dry eye.

>

> thanks again

> diane

> Sounds like you have many knowledgeable doctors that work with you - most

> of our

> medical doctors we cant even bring up lyme or they make us

> leave.........crazy

> docs!!

>

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Wed, March 2, 2011 2:16:03 PM

>

> Subject: Re: [ ] Bransfield-Lyme Depression

>

> No offense taken, no worries! Agree, it is better to have all thoughts on

> an issue.

>

> My son did have a month of IV antibiotics, the picc line had to be removed

> b/c it got infected. He also couldn't tolerate rocephin, so was put on IV

> zithromax, and my LLMD thought that there wasn't that much more benefit to

> IV zith vs. oral zith.

>

> My son had eye inflammation as well (episcleritis) and his eye doctor said

> it can be caused by lyme . . . or it is idiopathic.

>

> Also agree, HATE this rollercoaster. But, I tell myself it cannot last

> forever. This situation WILL change.

>

> Good luck to you too!

>

>

>

> On Wed, Mar 2, 2011 at 3:03 PM, Diane Biel <dkbmama@...> wrote:

>

> >

> >

> > Please know I didnt mean to question your llmd......I just wish we didnt

> > have to

> > have sick children....and it scares me that every move we make might help

> > or

> > hurt them.......I am sure you are doing the best for him.....my oldest

> has

> > IBS

> > that sends her to the ER.......I am just so sorry.....my oldest was also

> > just in

> > the er for eye inflammation last week - she also get the swollen knee and

> a

> >

> > month ago an ankle........I just get scared with the thought of the lyme

> > bacteria gaining again..........

> > Please know I just wrote to say what I felt - but nothing against you or

> > your

> > llmd - did they consider IV abx - that way it doesn't have to be digested

> > in the

> > stomic at all.......

> >

> > Diane

> >

> > ________________________________

> > From: Farhangi <lesliefarhangi@...>

> >

> > Sent: Wed, March 2, 2011 1:55:48 PM

> >

> > Subject: Re: [ ] Bransfield-Lyme Depression

> >

> > Yes, my LLMD treats a lot of kids; my son's been tested for coinfections

> > and

> > luckily has none. He also has gastritis that sent us to the emergency

> room

> > yesterday, so antibiotics that are tough on the stomach are out of the

> > question at the moment.

> >

> > After our neurologist appt we'll see the LLMD and get his take. Our LLMD

> > is

> > on the ILADS committee that wrote up their treatment guidelines, I am

> very

> > confident he is a great doctor.

> >

> >

> >

> > On Wed, Mar 2, 2011 at 2:52 PM, Diane Biel <dkbmama@...> wrote:

> >

> > >

> > >

> > > Just my thought on this......even with my treatment after five months

> of

> > > abx - I

> > > did not see very much improvement and now kind of back slid - but you

> > have

> > > to

> > > stay on abx long term........that is what wins the race........does you

> > > llmd

> > > treat alot of kids? Are they treating co-infections......I would not

> > take

> > > my

> > > child off of abx......sorry that is just my feeling....my girls had to

> go

> > > off

> > > due to outside reasons and they slowly went down and now are back into

> it

> > > and it

> > > is harder this time around......please think about this......I am sorry

> > if

> > > I am

> > > way off but this is what I feel -

> > >

> > > bless you - Diane

> > >

> > > ________________________________

> > > From: Farhangi <lesliefarhangi@...>

> > >

> > > Sent: Wed, March 2, 2011 1:49:06 PM

> > >

> > > Subject: Re: [ ] Bransfield-Lyme Depression

> > >

> > > Oh my god, thank you for this. My son is struggling at school, has had

> > > neuropsych testing and we are seeing a neurologist. The neurologist

> said

> > > he's never seen someone w/my son's profile -- he tests as very

> > intelligent

> > > but his brain processing speed is incredibly slow. His MRI shows two

> > brain

> > > lesions the neurologist believes are due to lyme inflammation.

> > >

> > > We took my son off antibiotics two weeks ago (after 5 months on) b/c

> > there

> > > really wasn't improvement (our LLMD thought it was OK).

> > >

> > > My worst fear is that he won't get any better at all . . . and if he

> > can't

> > > handle sixth grade, how will he handle any higher grade. But I tell

> > myself

> > > he's a kid, and still growing, and perhaps he can heal somewhat, if not

> > > completely.

> > >

> > >

> > >

> > > On Wed, Mar 2, 2011 at 2:44 PM, smd <merrymom1013@...> wrote:

> > >

> > > >

> > > >

> > > > She did get better, which is why I rarely post here anymore. Her LLMD

> > > ended

> > > > treatment after about 5 years of abx (which is about how long he told

> > us

> > > it

> > > > would take to get her better). She was left with narcolepsy- which is

> > > > autoimmune & all her doctors agree was triggered by the Lyme.

> > Recovering

> > > > from the Lyme made it easier to treat the narcolepsy symptoms. The

> Lyme

> > > left

> > > > a number of scars- physical, emotional & financial- mostly on her,

> but

> > on

> > > > our whole family. Things will never be totally wonderful, but

> compared

> > to

> > > > where she was, they are awesome. She has a few other health issues in

> > > > addition to the narcolepsy- we call them her Lyme souvenirs. But she

> is

> > > away

> > > > at college, has a driver's license, a great boyfriend and many good

> > > things

> > > > in her life.

> > > > After missing more than 3 years of school and dealing with all of the

> > > > struggles you all talk about here, she graduated on time & did super

> on

> > > her

> > > > SATs, so she had a number of scholarship offers. When she was

> sickest,

> > > she

> > > > needed an hour to write a sentence or two and couldn't do simple

> math.

> > > When

> > > > better, she got almost a 760/800 writing score on the SATs and

> thought

> > > > calculus was fun. Don't lose hope.

> > > > Sue

> > > >

> > > >