Re: HI. I'M A NEW MEMBER/Elaine

[Guest guest]

Hi Elaine,

Dr feels my son has had Lyme since age 2-3 because he has had several tick

bites every year, and his bloodwork showed past and present exposure.

He is 8 now. He was fine until he was 4.11 years old. It was like he woke up a

different child with severe " bad thought ocd " , which than turned into severe

separation anxiety and panic attacks, as well ADHD symptoms.. He also developed

tourette like tics starting last year. He wasn't diagnosed with Lyme until

October of last year.

I'm wondering if he will ever show any improvement!!!!

Do you think he needs IV therapy????? Maybe the orals are not strong enough.

Hugs

Judy

________________________________

From: <ecckwalk@...>

Sent: Thu, January 21, 2010 9:48:24 PM

Subject: Re: [ ] HI. I'M A NEW MEMBER

 

Hi Judy,

I am curious to hear about your son's psych symptoms. How old is your son and

what is his story?

We live in Oregon but see a CA doctor. My son is now 12 but began having

problems 4 yrs ago. He's been treated for almost 1 yr now and currently the

psych symptoms (anxiety, compulsive thoughts, loss of concentration) have gotten

worse. He develops anxiety/ phobia-like toward a person or situation. He also

tested + for Bartonella so our doc says the anxiety is probably mostly the

Bartonella. He went off abx about 4 mths ago, while doing SO well, and regressed

dramatically. Now he just can't pull back out of it.

Anyway, I'm just curious how old your son is and what psych symptoms you are

dealing with. I'm sorry that so many people are having to go through this but

it's so nice to hear others' stories.

thank you,

Elaine

[Guest guest]

Judy writes: I'm wondering if he will ever show any improvement!!!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his

guesstimate at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Dr. J said, 1-2 years ,or more on the antibiotics. I just thought I would see

some type of improvement mentally by now.

I'm not giving up, but feel like it!!

Hugs

Judy

________________________________

From: smd <merrymom1013@...>

Sent: Sat, January 23, 2010 8:40:49 PM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

 

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Hey Sue, My son saw Dr. J also and was taken off all iv and oral meds after

about two years. He also used the cured word to describe Tucker. Some people

look at me like they don’t believe it. But I made him repeat it two or three

times. Yes, cured. Symptom free. Has your child had any post symptoms?

From: [mailto: ]

On Behalf Of

Sent: Sunday, January 24, 2010 12:09 AM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

Don't give up the brain has lots of places to hide and the medication has to be

one that crosses the brain/blood barrier. It took us several times/years to get

things under control...just when we thought the bacteria was gone, it would show

its ugly self again. We stayed on antibiotics for 6 months, then would pulse

dose only for symptoms to return. Patience was our key!

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Yes, that is why I love winter. I am so happy to have the kids outside because

it seems so much safer (know they can still be out there …. but). My son is

symptom-free too. I thank God every day that we found Dr. J. I’m glad your

children are well and “cured†and Judy, I pray the same will occur for your

child. I know it’s a long and bumpy road. Take some time to care for yourself,

take a deep breath, and keep on going. Stay strong.

From: [mailto: ]

On Behalf Of

Sent: Sunday, January 24, 2010 12:38 AM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

We are symptom free. We also recognise that if she is exposed again that she

stands the chance of symptoms recurring.

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Don't give up the brain has lots of places to hide and the medication has to be

one that crosses the brain/blood barrier. It took us several times/years to get

things under control...just when we thought the bacteria was gone, it would show

its ugly self again. We stayed on antibiotics for 6 months, then would pulse

dose only for symptoms to return. Patience was our key!

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

 

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

We are symptom free. We also recognise that if she is exposed again that she

stands the chance of symptoms recurring.

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Has your child had any post symptoms?

Yes & no. Before the Lyme was diagnosed, it triggered narcolepsy. While most

sleep issues resolve with Lyme treatment, narcolepsy is lifelong. But now that

the Lyme is better, her narcolepsy is less severe & much easier to treat.

Otherwise, it's all good- no pain, fibromyalgia, cognitive problems, etc. With

Lyme, she went from a gifted student to unable to do simple math, focus enough

to read a " fun " novel or write very much. She's graduating on time from high

school this year (with her first semester of college done as well) & had SATs in

the top 5%.

Now if we can just avoid ticks!

Sue

PS As always, I'm amazed how much Dr J's length of treatment & medications vary

from child to child. He does take the time to know our kids in addition to

knowing every Lyme scenario.

[Guest guest]

Thanks so much for your reply. I, too, believe it is sooo great how Dr. J

individualizes treatment based on clinical evaluations rather than stats in

a textbook or simple guidelines from the CDC. Interesting that my son, too

was a straight A student and then went to not being able to put sentences

together either verbally or on paper. And math was the very hardest thing

for him. Now that he is " cured " he is left with a mind that definitely

learns differently. He is sometimes mad that he has to work so much harder

in school than he ever did and math continues to be hard. He is an A/B

student, but those grades take a lot more effort. We are working on

different learning strategies. I think part of that is also that he missed

so much school and lost some of the foundational work.

Avoiding ticks. Indeed. Permethrin is this family's close friend. And we are

working to pass a warrant article in our town to complete preventative

barrier spraying in all our public gathering places to help keep ticks at

bay between May and October. That's where I place my efforts: public

education, lyme legislation and personal prevention. I couldn't bear to have

my kids get sick again.

Best to you,

From:

[mailto: ] On Behalf Of smd

Sent: Sunday, January 24, 2010 10:24 AM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

Has your child had any post symptoms?

Yes & no. Before the Lyme was diagnosed, it triggered narcolepsy. While most

sleep issues resolve with Lyme treatment, narcolepsy is lifelong. But now

that the Lyme is better, her narcolepsy is less severe & much easier to

treat. Otherwise, it's all good- no pain, fibromyalgia, cognitive problems,

etc. With Lyme, she went from a gifted student to unable to do simple math,

focus enough to read a " fun " novel or write very much. She's graduating on

time from high school this year (with her first semester of college done as

well) & had SATs in the top 5%.

Now if we can just avoid ticks!

Sue

PS As always, I'm amazed how much Dr J's length of treatment & medications

vary from child to child. He does take the time to know our kids in addition

to knowing every Lyme scenario.

[Guest guest]

Hi ,

Thanks! I'm trying to stay positive.

A member from another group just mentioned something that I have to wonder is

the case for my son.

My son had the flu shot and the H1N1 shot, and has been much worse since it. I

really have to wonder if that may be why.

Hugs

judy

________________________________

From: Hall <Jkathhall@...>

Sent: Sat, January 23, 2010 11:54:59 PM

Subject: RE: [ ] HI. I'M A NEW MEMBER/Elaine

 

Yes, that is why I love winter. I am so happy to have the kids outside because

it seems so much safer (know they can still be out there …. but). My son is

symptom-free too. I thank God every day that we found Dr. J. I’m glad your

children are well and “cured†and Judy, I pray the same will occur for your

child. I know it’s a long and bumpy road. Take some time to care for yourself,

take a deep breath, and keep on going. Stay strong.

From: [mailto: @ groups.

com] On Behalf Of

Sent: Sunday, January 24, 2010 12:38 AM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

We are symptom free. We also recognise that if she is exposed again that she

stands the chance of symptoms recurring.

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

I agree..Patience is a virtue!!!!

Hugs

Judy

________________________________

From: <InRNette@...>

Sent: Sun, January 24, 2010 12:08:49 AM

Subject: Re: [ ] HI. I'M A NEW MEMBER/Elaine

 

Don't give up the brain has lots of places to hide and the medication has to be

one that crosses the brain/blood barrier. It took us several times/years to get

things under control...just when we thought the bacteria was gone, it would show

its ugly self again. We stayed on antibiotics for 6 months, then would pulse

dose only for symptoms to return. Patience was our key!

Sent via BlackBerry from T-Mobile

Re: [ ] HI. I'M A NEW MEMBER/Elaine

 

Judy writes: I'm wondering if he will ever show any improvement! !!!

What did Dr. J tell you? When he started seeing my daughter he told us that in

his experience cases like hers took 2-3 years on average to get better, and

occasionally 4-5 years.

Her improvement was minimal and I wasn't always 100% sure that she was getting

better. But we persisted & trusted Dr J (the only one who offered any hope for

recovery), & sure enough at about 2.5 years into treatment, we realized she was

significantly better. The symptoms resolved very slowly & one at a time. After

4.5 years, he is calling her cured & she is finally off abx. So, his guesstimate

at that first visit was right on target. Don't give up.

Sue

[Guest guest]

Our LLMD suggested avoiding the flu vaccinations. Both for the chemicals and

preservatives in them that can affect you nuerologically, for the speed that

they rushed producing the H1N1, and the fact that since your body has to " fight "

the vaccine to create the antibodies, that is lowering your bodies defenses and

since you are already immune comprised with Lyme, you can end up even sicker.

We don't get the flu vaccine anyways, however this all made logical sense to me.

I had said something to him because H1N1 was found in my daughter's school and I

had a concern about her weakened immune system and if she got it could she be

sicker than might be expected. I wasn't planning on getting the vaccine for

her, however he talked about the vaccine, and then other preventive measures we

could take.

Charlotte

(Please note new email address, effective immediately)

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] HI. I'M A NEW MEMBER/Elaine

Hi ,

Thanks! I'm trying to stay positive.

A member from another group just mentioned something that I have to wonder is

the case for my son.

My son had the flu shot and the H1N1 shot, and has been much worse since it. I

really have to wonder if that may be why.

Hugs

judy