newbie

[Guest guest]

As the parent of a 13 year old who still struggles with some speech issues, I

wish I had gone outside the school district to private services OR had done

exercises daily with my child at home.

The program I now have my son on has us working his speech for 3 times a day for

approximately 25 minutes each session at home. Thus he is getting close to 1

hour & a half per day. His issues are now only very slight but that is how hard

we are working them.... and it is 'still' taking forever to finish off!

My son was like your boys, he was extremely verbal but also very difficult to

comprehend. Think about trying a CF elimination diet to see if it improves

speech especially if they drool. Also look at auditory integration therapies

such as The Listening Program, Tomatis or Berrard to work their ears.

If I could turn back time, I would have done daily work with my son when he was

3. I just didn't know how tough the apraxia & the dysarthria is to beat. All

of the specialists sort of 'tossed it off' as a speech delay and indicated that

he would grow out of it..... but that is not so. In particular to dysarthria &

motor planning..... daily practice with the lips and tongue make amazing amounts

of difference.

For instance..... all of these years I never realized that my son had such a

difficult time lifting his tongue to the roof of his mouth. When asked to do

it.... he would slowly and strenuously lift his tongue.... as though he were

lifting a ten pound weight on it! I was flaberghasted. So we worked it every

single day and after 3 months, he can do it easily and readily. 10 years of

'system' SLP and no one had given me tongue exercises before now! The right

therapy for apraxia & dysarthria makes a world of difference. The wrong therapy

takes years and years and years for the child to get better.

So.... take the school therapy but work at home with your boys. Learn about

motor planning and develop a program. The truth is..... we all must become

'quasi' therapists! That is how long it takes to get through this stuff.....

long enough for the parent to become a bona fide therapist! Personally, I think

that you need to do as much daily with your children as possible. The more work

you do, the more the neural connections get made and the stronger they

become.... the better the prognosis and the faster your child gets through this.

Good luck.

Janice

Mother of Mark, 13

[sPAM][ ] Newbie

I'm a father of twin boys who are 3. I have been told by my school

district's speech therapist that both have a severe Developmental

Apraxia.

Both of my boys have been tested and found to be below the 1% for

speech. Fortunately, on the other hand their language skills are off

the charts. They use language and understand it like crazy but their

speech is unintelligible.

They have been attending the special ed program at our school. They

attend five days a week for appx. 2 1/2 hours w/ appx. 11 other

children. Twice a week they are removed from their class to have a

speech session w/ a therapist. They attend this session w/ another

child. They are also removed from the class for Occ. Therapy and

Physical Therapy due to gross/fine motor skill delays.

I'm starting to wonder if this is enough. Five days for 2 1/2 hours

is a lot for my boys. It's the amount of (or lack of) individual

attention that concerns me. My boys are described as very bright and

able to maintain their attention during class. I'm wondering if

anyone has any thoughts on if I should seek additional speech therapy

outside of the school district. I'm wondering if this will help or

even cause more problems - IE - two therapist teaching different

methods.

Thanks.

[Guest guest]

Regarding the auditory integration therpies, Isn't TLP the only one

for kids this little? I asked our OT and she said the others were too

intense for the little ones. Is that so?

>

> As the parent of a 13 year old who still struggles with some speech

issues, I wish I had gone outside the school district to private

services OR had done exercises daily with my child at home.

>

> The program I now have my son on has us working his speech for 3

times a day for approximately 25 minutes each session at home. Thus

he is getting close to 1 hour & a half per day. His issues are now

only very slight but that is how hard we are working them.... and it

is 'still' taking forever to finish off!

>

> My son was like your boys, he was extremely verbal but also very

difficult to comprehend. Think about trying a CF elimination diet to

see if it improves speech especially if they drool. Also look at

auditory integration therapies such as The Listening Program, Tomatis

or Berrard to work their ears.

>

> If I could turn back time, I would have done daily work with my son

when he was 3. I just didn't know how tough the apraxia & the

dysarthria is to beat. All of the specialists sort of 'tossed it

off' as a speech delay and indicated that he would grow out of

it..... but that is not so. In particular to dysarthria & motor

planning..... daily practice with the lips and tongue make amazing

amounts of difference.

>

> For instance..... all of these years I never realized that my son

had such a difficult time lifting his tongue to the roof of his

mouth. When asked to do it.... he would slowly and strenuously lift

his tongue.... as though he were lifting a ten pound weight on it! I

was flaberghasted. So we worked it every single day and after 3

months, he can do it easily and readily. 10 years of 'system' SLP

and no one had given me tongue exercises before now! The right

therapy for apraxia & dysarthria makes a world of difference. The

wrong therapy takes years and years and years for the child to get

better.

>

> So.... take the school therapy but work at home with your boys.

Learn about motor planning and develop a program. The truth is.....

we all must become 'quasi' therapists! That is how long it takes to

get through this stuff..... long enough for the parent to become a

bona fide therapist! Personally, I think that you need to do as much

daily with your children as possible. The more work you do, the more

the neural connections get made and the stronger they become.... the

better the prognosis and the faster your child gets through this.

>

> Good luck.

>

> Janice

> Mother of Mark, 13

>

>

>

> [sPAM][ ] Newbie

>

>

> I'm a father of twin boys who are 3. I have been told by my

school

> district's speech therapist that both have a severe Developmental

> Apraxia.

>

> Both of my boys have been tested and found to be below the 1% for

> speech. Fortunately, on the other hand their language skills are

off

> the charts. They use language and understand it like crazy but

their

> speech is unintelligible.

>

> They have been attending the special ed program at our school.

They

> attend five days a week for appx. 2 1/2 hours w/ appx. 11 other

> children. Twice a week they are removed from their class to have

a

> speech session w/ a therapist. They attend this session w/

another

> child. They are also removed from the class for Occ. Therapy and

> Physical Therapy due to gross/fine motor skill delays.

>

> I'm starting to wonder if this is enough. Five days for 2 1/2

hours

> is a lot for my boys. It's the amount of (or lack of) individual

> attention that concerns me. My boys are described as very bright

and

> able to maintain their attention during class. I'm wondering if

> anyone has any thoughts on if I should seek additional speech

therapy

> outside of the school district. I'm wondering if this will help

or

> even cause more problems - IE - two therapist teaching different

> methods.

>

> Thanks.

>

>

>

>

>

>

[Guest guest]

Since your sons have severe apraxia, I'd push to get individualized sessions for

each kid (1:1 services). I'm thinking that ASHA recommends intensive therapy,

1:1, four times per week for apraxia.....

I've had a lot of success hooking up with the local university's speech clinic.

Currently my son receives two hours per week at the college. It's cost is $400

per semester (roughly three months), and the student SLPs are closely monitored

-- the supervisor watches them via camera. My son receives a third semester

grad student because of his diagnosis. There was an long waiting list, but

worth it. At the college, we can do up to three semesters of speech.

I'd also check out Easter Seals. I'm thinking they sometimes have programs at

reduced rates. Since you have two kids, private therapy could become pretty

expensive.

Whatever you chose, make sure the therapist use methods appropriate for apraxia.

@...: ffla98@...: Fri, 22 Feb

2008 09:28:43 +0000Subject: [ ] Newbie

I'm a father of twin boys who are 3. I have been told by my school district's

speech therapist that both have a severe Developmental Apraxia.Both of my boys

have been tested and found to be below the 1% for speech. Fortunately, on the

other hand their language skills are off the charts. They use language and

understand it like crazy but their speech is unintelligible. They have been

attending the special ed program at our school. They attend five days a week for

appx. 2 1/2 hours w/ appx. 11 other children. Twice a week they are removed from

their class to have a speech session w/ a therapist. They attend this session w/

another child. They are also removed from the class for Occ. Therapy and

Physical Therapy due to gross/fine motor skill delays.I'm starting to wonder if

this is enough. Five days for 2 1/2 hours is a lot for my boys. It's the amount

of (or lack of) individual attention that concerns me. My boys are described as

very bright and able to maintain their attention during class. I'm wondering if

anyone has any thoughts on if I should seek additional speech therapy outside of

the school district. I'm wondering if this will help or even cause more problems

- IE - two therapist teaching different methods.Thanks.

_________________________________________________________________

Climb to the top of the charts! Play the word scramble challenge with star

power.

http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_jan

[Guest guest]

Thank you to everyone who replied. All of you were very helpful.

We have set up an evaluation w/ a SLP our pedatrician referred. I'm

also going to look into some of the alternatives sources for therapy

that all of you recommended.

Thank - Bob

>

> If you can, I would also try and get private speech for the boys.

> I do this with my son but I make sure the therapists are both on

> the same page.

>

> Fortunately the slp's both work out of the same office so they had

> offered to keep each other updated and work together on goals

> for my son.

>

> Sandy

>

>

> [ ] Newbie

>

> I'm a father of twin boys who are 3. I have been told by my school

> district's speech therapist that both have a severe Developmental

> Apraxia.

>

> Both of my boys have been tested and found to be below the 1% for

> speech. Fortunately, on the other hand their language skills are

off

> the charts. They use language and understand it like crazy but

their

> speech is unintelligible.

>

> They have been attending the special ed program at our school. They

> attend five days a week for appx. 2 1/2 hours w/ appx. 11 other

> children. Twice a week they are removed from their class to have a

> speech session w/ a therapist. They attend this session w/ another

> child. They are also removed from the class for Occ. Therapy and

> Physical Therapy due to gross/fine motor skill delays.

>

> I'm starting to wonder if this is enough. Five days for 2 1/2 hours

> is a lot for my boys. It's the amount of (or lack of) individual

> attention that concerns me. My boys are described as very bright

and

> able to maintain their attention during class. I'm wondering if

> anyone has any thoughts on if I should seek additional speech

therapy

> outside of the school district. I'm wondering if this will help or

> even cause more problems - IE - two therapist teaching different

> methods.

>

> Thanks.

>

>

>

>

>

> Be smarter than spam. See how smart SpamGuard is at giving

junk email the boot with the All-new . Click on Options

in Mail and switch to New Mail today or register for free at

http://mail..ca

>

>

[Guest guest]

Hi !

It's nice to see another military family here.

Welcome! Where are you all stationed?

Jo

(mom to 7, Christian -youngest- has right plagio, left tort-resolved)

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi! Thanks! We are stationed at Marine Corps Air Satation Yuma, Az

>

> Hi !

> It's nice to see another military family here.

> Welcome! Where are you all stationed?

>

> Jo

> (mom to 7, Christian -youngest- has right plagio, left tort-

resolved)

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Hi !

Has your son began using it yet? My little girl is 12 mo old and we

just got wind of what will have to do to fix things. I've heard it is

a royal pain in the neck trying to get Tricare to pay for this. The

doctor brought up the idea of writing to a congressman to see if they

will push Tricare to pay in return for the services our military gives

us. She has had a few patients to try it and it worked! Anyway, I am

curious as to who you went through (just in case the politician idea

doesn't work). If you don't mind me asking, where are you stationed?

>

> Hi everyone! I am new to the group so I thought I would introduce

> myself. I am and my son who is 11 months old is Logan. He is

> going to be starting the process of getting his Doc Band on Friday!

We

> are very excited because it took us a little bit to get the money

since

> our insurance, TriCare, wont pay for it. But an organization that is

> with the military helped us out sooo much!! So i just thought i

would

> introduce myself

>

> -heather

>

[Guest guest]

Hello!

I was reading your post and we too are military at Ft.Drum and may be going to the banding route. Repositioning doesn't seem to be working. The politician idea is good if tricare won't pay for it. I have seen though that Tricare paid for a starband in the texas area because it was at their MTF. You would think that if they paid for that one then they should pay for all of them. What organization did you go through to help pay for it? Good luck with the band:) Amy

Re: Newbie

Hi !Has your son began using it yet? My little girl is 12 mo old and we just got wind of what will have to do to fix things. I've heard it is a royal pain in the neck trying to get Tricare to pay for this. The doctor brought up the idea of writing to a congressman to see if they will push Tricare to pay in return for the services our military gives us. She has had a few patients to try it and it worked! Anyway, I am curious as to who you went through (just in case the politician idea doesn't work). If you don't mind me asking, where are you stationed? >> Hi everyone! I am new to the group so I thought I would introduce > myself. I am and my son who is 11 months

old is Logan. He is > going to be starting the process of getting his Doc Band on Friday! We > are very excited because it took us a little bit to get the money since > our insurance, TriCare, wont pay for it. But an organization that is > with the military helped us out sooo much!! So i just thought i would > introduce myself > > -heather>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Trish, is he seeing a rheumatologist? That is step one.

best regards,

sherry z

>

> Hi...I'm Trish from Alabama. I'm a 34 yo SAHM due to a disability. My

> husband was diagnosed with PA 2 years ago and continues to get worse.

> I am just wondering if there is anything i can do to help him. I

> love him so much and seeing him in pain is killing both of us. I am

> partially disabled, so i can only do what I can. Does anyone have any

> pain relief suggestions? I'm also looking for any recipes that are

> good for this. Thanks. Anyone wanting to chat please use my

> id...trishkitchens. Thanks.

>

[Guest guest]

I just wrote a long message reply to " Todd " above -- might check some

of that out. Also, BioFreeze and Sombra are the best topical pain

relievers I have found. I also like soaking in a hot tub of water with

dead sea bath salts. Some say that Burt's Bees is great to soak in but

I have not yet tried them -- they tend to be a bit expensive.

As I told Todd, email anytime, I am happy to help in any way I can.\

Cheryl M.

[Guest guest]

I am so glad to hear you are taking her to see Dr. , he's the best and will

test her thoroughly and properly for everything related to her Lyme symptoms and

possible co-infections.  Both my daughters have Lyme (now 8 and 11) as do my

husband and myself.  We have all been under treatment since 2005.  Please tell

your daughter her feelings are normal, you definitely have days/weeks/months

that you feel anti-social and symptoms flare, you feel 'too ill to deal with

anyone' but things WILL get better.  We all still have bad days but we are

getting better, and now there are more good days than bad, and so much of it is

being treated properly and knowing if you're dealing with other things besides

Lyme.  Dr. has always told us 'kids get over this' and I believe him!  

PS Also, does anyone know of a website/email site where kids/teens with Lyme can

chat?? Or maybe some Lyme parents could hook your teens up over email?  This

email parent site has helped us alot with questions and support and maybe that

would help know that she's not alone too.

From: <mafitzg@...>

Subject: [ ] Newbie

Date: Monday, August 18, 2008, 2:14 AM

Hi! I'm new to this group so I thought I'd just say hello. My name is

and my 16 year old daughter, , has lyme disease. She was

diagnosed in September of 2006 based on 29 symptoms she was showing at

the time. We live in Maine and, because the ELILSA came back negative,

we were unable to have a WEstern Blot done. She was being treated in

Boston by Dr. Sam Donta until recently and now, will be treated by Dr.

Jomes out of Connecticut.

still has most of the classic lyme symptoms and , recently has

been showing alot of the symptoms for Bartonella. She's missed most of

the last 2 years of school and has lost most of her friends due to this

illness. It's a brutal disease to young people. I would love to hear

from parents of teenagers especially since I am at a total losss for

how to deal with alot of the neurological issues involved. Some days

are just too tough to face even though we do time and again.

How do you guys deal with the day to day issues from the medical and

lay community regarding this??? has begun to feel like a " freak "

outside her own home and, with the school year approaching, the stress

is really getting to us all....Anyone have any suggestions?

[Guest guest]

Hi , No easy suggestions for you, but I can relate. My daughter is

almost 16 and in the process of going back to school after being out 3 years.

The social toll is huge & for my daughter, she is recovering but left with some

issues trriggered by the lyme that may not resolve. We have tried to plug away

at treating the lyme, but also treat the other symptoms. We have struggled to

find specialists that aren't too lyme hostile. We have a LLMD psychiatrist, and

have worked with a counselor, endicrinologist, neurologist, immunologist, sleep

specialist, chronic fatigue expert. It is never-ending & the progress has been

slow. I try to respect my daughter's concerns- she is the one living this.

Any time you want to email me off -list, I'd be happy to' talk.'

Sue

[Guest guest]

There is a Group called Lyme_Warriors that is for teenagers and young

adults with Lyme.  It has not been very active lately but it might be worth a

try.

Carolyn

From: <mafitzg (DOT) com>

Subject: [ ] Newbie

Date: Monday, August 18, 2008, 2:14 AM

Hi! I'm new to this group so I thought I'd just say hello. My name is

and my 16 year old daughter, , has lyme disease. She was

diagnosed in September of 2006 based on 29 symptoms she was showing at

the time. We live in Maine and, because the ELILSA came back negative,

we were unable to have a WEstern Blot done. She was being treated in

Boston by Dr. Sam Donta until recently and now, will be treated by Dr.

Jomes out of Connecticut.

still has most of the classic lyme symptoms and , recently has

been showing alot of the symptoms for Bartonella. She's missed most of

the last 2 years of school and has lost most of her friends due to this

illness. It's a brutal disease to young people. I would love to hear

from parents of teenagers especially since I am at a total losss for

how to deal with alot of the neurological issues involved. Some days

are just too tough to face even though we do time and again.

How do you guys deal with the day to day issues from the medical and

lay community regarding this??? has begun to feel like a " freak "

outside her own home and, with the school year approaching, the stress

is really getting to us all....Anyone have any suggestions?

[Guest guest]

Has anyone had their child healed with Rife/EMEM, Tucker machines,

homeopathy, herbal, anything that is alternative or did they use partial

alternative.

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Hi

well Robynn who runs THIS site also has a lyme warriors site on --Ill try

to link you--for teens andyoung adults and its well moderated??

Lyme_Warriors/

if this doesnt work--go to and search health groups, " lyme warrirors "

then you or join and post--

and one young gal--makayla--I " know " her Mom--nice family--she will reach out

and help !!! tell her I sent you!!!

be careful of many of the other sites and blogs and webs--there seem to be a few

that welcome younger people yet Im not impressed with their ability to filter

info.

I know how hard it is --Evan is almost 19 and has lost 3 yrs of high school even

too ill for home instruction--not ONE of his friends stayed in touch and he is a

male--i.e. unwilling to talk or reach out much--he says if they wont call him or

answer his emails--fine- he has been ill since age 15 and is thought ot be

gestational--I was pregnant with him when infected, then he had a tick bite age

18 mo and undertreated. when symptoms began to show at age 12 he only tested pos

for mycoplasma, resolved with abx then ill again and again finally pos for

Bartonella..by mid 9th grade he was bedridden. a short rally beginning 10th

grade last 1 month then slide all the way worse and since--not much better-.the

Lyme is simply assumed as he doesnt test pos for that--no matter.

often we get through the day minute to minute--I always walk the line between

mean Mom ( Evan you have GOT to drink that juice or Im calling the squad to run

you to the ER) to Mom with Lyme who knows eaxctly what he feels ( Ok Evan sleep

another 5 hrs if thats what you need)

but when we face any outsiders--including family members---who DONT know what

lving in a Lyme ravaged body is like I am his biggest advocate---Im right there

to correct misperception of school staff and Drs as well as provide as much

education as I can. Ive given videos and cds and articles to school staff and

less informed drs--but it often doesnt help.

Teesn have it tougher ( longer to recover) than younger kids or adults maybe due

to changing hormones and growth...so hang in--the storm is rougher but doable.

And duck and cover with the mood swings which are like the usual teen stuff only

about 100 times as rough, changeable and severe. Dont rush to use drugs like

antidepressants unless youve questioned throroughyl the need. and Dr IS

good but for us he couldnt offer much more than what we had already done--and he

is getting worn and tired from all the legal hoopla poor soul with no

replacement in sight.

also even thought its for dysautonomia many with Lyme have that and its a great

site for kids with chronic illness at www.dynakids.org?? they even have camps

and teen get togethers--so those with illness dont feel like freaks and by

sharing coping stuff it becomes agroup support.

anytime you need anything or to vent you are welcome here--or even email me

finrussak@... and the very best advice I have is always follow your gut--if

it feels not right QUESTION and then make a decision based upon your

instincts!!! YOU are your childs best advocate

good luck and hang in

Finette

[ ] Newbie

Date: Monday, August 18, 2008, 2:14 AM

Hi! I'm new to this group so I thought I'd just say hello. My name is

and my 16 year old daughter, , has lyme disease. She was

diagnosed in September of 2006 based on 29 symptoms she was showing at

the time. We live in Maine and, because the ELILSA came back negative,

we were unable to have a WEstern Blot done. She was being treated in

Boston by Dr. Sam Donta until recently and now, will be treated by Dr.

Jomes out of Connecticut.

still has most of the classic lyme symptoms and , recently has

been showing alot of the symptoms for Bartonella. She's missed most of

the last 2 years of school and has lost most of her friends due to this

illness. It's a brutal disease to young people. I would love to hear

from parents of teenagers especially since I am at a total losss for

how to deal with alot of the neurological issues involved. Some days

are just too tough to face even though we do time and again.

How do you guys deal with the day to day issues from the medical and

lay community regarding this??? has begun to feel like a " freak "

outside her own home and, with the school year approaching, the stress

is really getting to us all....Anyone have any suggestions?

[Guest guest]

Hi There,

My son, Tucker, would be willing to post to your daughter individually. He is 13

and was diagnosed with LD four years. He had a rough year last year,

misdiagnosis', surgeries, fears of cancer, etc. until we began working with Dr.

. He was on iv meds and is now out of a wheelchair, just enjoyed a weekend

in Vermont swimming and hiking, and is ready (as any teen is) to go to school.

He is tired today and complaining of a headache, which makes me nervous, but I

think he's just recovering from that big expenditure of energy this weekend.

I can totally appreciate how hard it is day to day for you and your daughter.

There were so many days where Tucker could not do ANYTHING and even talking on

the phone, putting sentences together, was a big deal. There were many nights I

was on my knees praying for just a little guidance and understanding of what he

was going through. It is against every vein in our body to watch our children

suffer. And it's brutal to watch their friends fall away. I swear, some parents

need a good swift kick in the pants when it comes to teaching their children how

to be compassionate.

But I do believe that once you find it, this incredible network of Lyme-literate

parents is a HUGE resource of compassion, education and a soft place to land

when you are at your wit's end.

I live in New Hampshire, and we saw some of the " best docs " in Boston. It was

Dr. that gave my son his life back. i'm glad you're going to see Dr. J.

Every time I talk to the folks in his office, I just smile. They are like family

(I have two other children with LD, though not as serious as Tucker.)

Please feel free to email back personally and perhaps we can chat by phone.

My best to you and your daughter,

and Tucker

[ ] Newbie

Date: Monday, August 18, 2008, 2:14 AM

Hi! I'm new to this group so I thought I'd just say hello. My name is

and my 16 year old daughter, , has lyme disease. She was

diagnosed in September of 2006 based on 29 symptoms she was showing at

the time. We live in Maine and, because the ELILSA came back negative,

we were unable to have a WEstern Blot done. She was being treated in

Boston by Dr. Sam Donta until recently and now, will be treated by Dr.

Jomes out of Connecticut.

still has most of the classic lyme symptoms and , recently has

been showing alot of the symptoms for Bartonella. She's missed most of

the last 2 years of school and has lost most of her friends due to this

illness. It's a brutal disease to young people. I would love to hear

from parents of teenagers especially since I am at a total losss for

how to deal with alot of the neurological issues involved. Some days

are just too tough to face even though we do time and again.

How do you guys deal with the day to day issues from the medical and

lay community regarding this??? has begun to feel like a " freak "

outside her own home and, with the school year approaching, the stress

is really getting to us all....Anyone have any suggestions?

[Guest guest]

Evan had a large but short lived remission after using Zhang protocol of chinese

herbs/accupuncture which are a lot like the Buhner herbals...but as with

everything else we try its always a slide back--assumably due to his other

problem of low IGG which may also be from birth ( but who ever has a reason to

take blood on an assumably well infant for obscure conditions)

As for RIFE, I know 3 who tried it for kids--all had a few days of tiny

improvements--they thought, then nothing-BUT several had been told to " not take

a chance on this alone " by the main proponent of that-? a Rosner--as its

well, to be polite, not reliable as anything other than a placebo and if he said

he'd not recommend taking a chance with a kid's life, then my thoughts are then

WHO should??

I?know many like myself adding supplements to the kids' regimens with mixed

responses too--its as variable as everything in Lyme. Right now we have Evan on

LDN--low dose naltrexone, stopped the Percoba ( cow colustrum) as it was

useless; suprax as a placeholder until a new Lyme eval; vit c, magnesium,

potaassium due to the Diamox, Diamox for the Chiari and brain inflammation; and

sometimes bromelain and quercetin for inflamed joints and Boswelia for various

sx.

Finette

Re: [ ] Newbie

Has anyone had their child healed with Rife/EMEM, Tucker machines,

homeopathy, herbal, anything that is alternative or did they use partial

alternative.

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

HI:

 

I thought I would comment on Rifing.

 

Most natural and pharma antibiotics are not able to reach some parts of the

body. When we rife as a family (Doug Coil), we herx from the rifing because

spiros are still living in places where the blood supply is low.

 

We use both, antibiotics, herbs, and rifing. However, in my experience so far, I

recommend regular labs, because sometimes the herx reactions can be too strong

and lower the wbc count.

 

I have discovered that most MD's, especially ILADS trained MD's do not agree

with Rifing. I feel like the reason is because a) it is outside their experience

they have enough pressure from the IDSA just ordering antibiotic therapy.

 

Also, another plus for rifing: I can't talk the antibiotics for bartonella

because it causes paralysis to set in. I can kill bartonella through rifing. It

really helps because otherwise, I might lose the battle altogether.

 

Hope this helps,

 

Peggy

From: FinRussak@... <FinRussak@...>

Subject: Re: [ ] Newbie

Date: Monday, August 18, 2008, 8:14 PM

Evan had a large but short lived remission after using Zhang protocol of chinese

herbs/accupuncture which are a lot like the Buhner herbals...but as with

everything else we try its always a slide back--assumably due to his other

problem of low IGG which may also be from birth ( but who ever has a reason to

take blood on an assumably well infant for obscure conditions)

As for RIFE, I know 3 who tried it for kids--all had a few days of tiny

improvements- -they thought, then nothing-BUT several had been told to " not take

a chance on this alone " by the main proponent of that-? a Rosner--as its

well, to be polite, not reliable as anything other than a placebo and if he said

he'd not recommend taking a chance with a kid's life, then my thoughts are then

WHO should??

I?know many like myself adding supplements to the kids' regimens with mixed

responses too--its as variable as everything in Lyme. Right now we have Evan on

LDN--low dose naltrexone, stopped the Percoba ( cow colustrum) as it was

useless; suprax as a placeholder until a new Lyme eval; vit c, magnesium,

potaassium due to the Diamox, Diamox for the Chiari and brain inflammation; and

sometimes bromelain and quercetin for inflamed joints and Boswelia for various

sx.

Finette

Re: [ ] Newbie

Has anyone had their child healed with Rife/EMEM, Tucker machines,

homeopathy, herbal, anything that is alternative or did they use partial

alternative.

************ **It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information. travel.aol. com/deals? ncid=aoltrv00050 000000047)

[Guest guest]

For what it's worth, Dr. C. in Springfield, MO, is very open to all manner

of alternative treatments, including Rife, in conjunction with conventional

meds to whatever degree you want to take them. Email me privately if you

want his contact info. He books a couple months in advance, but there are

often cancellations.

If you decide to have an appointment with him, it is helpful to be as

informed as possible about what you are willing to try, because he's often

in a rush and has lots of alternatives to suggest.

If I didn't want to try something he suggested, he was pretty decent about

it, unlike most docs whose egos get bruised easily around well informed

patients who want to direct their own healing.

Kelley

kputman@...

Re: [ ] Newbie

Has anyone had their child healed with Rife/EMEM, Tucker machines,

homeopathy, herbal, anything that is alternative or did they use partial

alternative.

************ **It's only a deal if it's where you want to go. Find your

travel

deal here.

(http://information. travel.aol. com/deals? ncid=aoltrv00050 000000047)

[Guest guest]

Hi Peggy

Im gald that rifing seems to help your family but I think the reason

many Drs and others disagree with the effectiveness has more to do

with the explanation given by those promoting it as to the way its

supposed to work--it cant possibly for so many reasons..Now Im one

of those who try stuff even if I dont understand the HOW and WHY it

works

LLMDs have far less pressure to go mainstream--many embrace

homeopathy, herbs, other alternative meds.even a very suspect muscle

testing stuff;.yet of course the excuse of why they wont recommend

Rife is that they dont understand or feel " pressured " not to---silly

maybe they wont go as far as to embrace this is because of how

unlikely it is for it to work and the unknowns about repeated use

over time and its after effects???

but when Im given an explanation by promoters of any modality that

cant possibly be true--well thats when I begin to suspect less than

valid info--I respect more the " maybe ittl work even if we dont

understand how "

who can say why anything works for a few here and there?? but as a

whole, there hasnt been enough remissions and enough results with

using Rife alone to convince me that its any better ( or worse to be

fair) than all other less than truly effective alternatives

or for that matter abx---not one " plan " of a set list of abx and

dosing that will be effective for a wide number of sufferers

if after looking into it and understanding all of the good and bad

about ANY treatment you still want to take a chnce--I say G-d Bless,

just please dont be one of those who continue to promote it based

upon repeating whatever misinfo the promoters print.

and realize when you are mixing regimens--you can never tell which

part of the regimen is doing the work!! you can certainly say

you/your family feel better from Rife and suffer no ill effects that

you know of yet, and so will continue but you cant validly attribute

anything to the Rife part of the regimen

be well

Finette

>

> HI:

>  

> I thought I would comment on Rifing.

>  

> Most natural and pharma antibiotics are not able to reach some

parts of the body. When we rife as a family (Doug Coil), we herx

from the rifing because spiros are still living in places where the

blood supply is low.

>  

> We use both, antibiotics, herbs, and rifing. However, in my

experience so far, I recommend regular labs, because sometimes the

herx reactions can be too strong and lower the wbc count.

>  

> I have discovered that most MD's, especially ILADS trained MD's do

not agree with Rifing. I feel like the reason is because a) it is

outside their experience they have enough pressure from the IDSA

just ordering antibiotic therapy.

>  

> Also, another plus for rifing: I can't talk the antibiotics for

bartonella because it causes paralysis to set in. I can kill

bartonella through rifing. It really helps because otherwise, I

might lose the battle altogether.

>  

> Hope this helps,

>  

> Peggy

>

[Guest guest]

Peggy,

What machine do you have?

Sal

>

> From: FinRussak@... <FinRussak@...>

> Subject: Re: [ ] Newbie

>

> Date: Monday, August 18, 2008, 8:14 PM

>

>

>

>

>

>

> Evan had a large but short lived remission after using Zhang

protocol of chinese herbs/accupuncture which are a lot like the

Buhner herbals...but as with everything else we try its always a

slide back--assumably due to his other problem of low IGG which may

also be from birth ( but who ever has a reason to take blood on an

assumably well infant for obscure conditions)

>

> As for RIFE, I know 3 who tried it for kids--all had a few days of

tiny improvements- -they thought, then nothing-BUT several had been

told to " not take a chance on this alone " by the main proponent of

that-? a Rosner--as its well, to be polite, not reliable as

anything other than a placebo and if he said he'd not recommend

taking a chance with a kid's life, then my thoughts are then WHO

should??

>

> I?know many like myself adding supplements to the kids' regimens

with mixed responses too--its as variable as everything in Lyme.

Right now we have Evan on LDN--low dose naltrexone, stopped the

Percoba ( cow colustrum) as it was useless; suprax as a placeholder

until a new Lyme eval; vit c, magnesium, potaassium due to the

Diamox, Diamox for the Chiari and brain inflammation; and sometimes

bromelain and quercetin for inflamed joints and Boswelia for various

sx.

>

> Finette

>

> Re: [ ] Newbie

>

> Has anyone had their child healed with Rife/EMEM, Tucker machines,

> homeopathy, herbal, anything that is alternative or did they use

partial alternative.

>

> ************ **It's only a deal if it's where you want to go. Find

your travel

> deal here.

> (http://information. travel.aol. com/deals? ncid=aoltrv00050

000000047)

>

>

[Guest guest]

Hi (and everyone else),

I joined this list a while ago, but I can't remember if I ever

introduced myself --so I'm afraid I've been lurking. 's post

has prompted me to write...

My daughter is also 16 and has been treating with Dr. (are we

really allowed to use his name on this list?)for about 3 years now.

After being misdiagnosed for over 2 years, Lyme, Babesia and

Bartonella had a lot of opportunity to do their damage.

Unfortunately, she is still not entirely well, but doing considerably

better than she was and we love Dr. . He is the one doctor that

she doesn't mind going to see -- and she still has plenty of them!

She experienced all of the same problems with " friends " totally

forgetting that she existed and the awkwardness associated with that

when she was in and out of school. Everything you said in your email

sounds so much like my daughter and a bunch of other 'Lyme' kids I

know!

While this is probably not the answer for everyone, we ended up

dealing with the school thing by taking her out and home-schooling

her last year. She had found it very frustrating to try to keep up

with her classes with tutors when she was out of school and the rote

lessons being sent home were awful. Even though she liked her tutors,

she didn't really think she was learning anything -- just memorizing.

She has since said that home-schooling is the only good thing that

has come out of Lyme -- and is continuing it this year. She has met

some really great kids in the home-schooling community that are much

more accepting of differences and has made some nice friends. We also

know a couple of other kids with Lyme here in Mass. that do home-

schooling -- which is actually what prompted us to consider it.

Anyway, my daughter is now well enough that she actually wants to

reach out (and has been) to other kids in the same situation -- so I

know she would email your daughter if you would like her to. Just

email me back privately and I'll send you her email address.

She also joined LymeTeens on and has made some email friends

that way. One in particular has become a great friend and I think

it's wonderful that they can really relate to the ins and outs of

life with Lyme. Interestingly, we are headed to Maine for a few days

next week and the only thing she really wanted to know was if she

would have an internet connection so she can get her emails!

Feel free to email me any time -- just put 'Lyme' in the memo field

so you don't get knocked out by my junk mail filter.

Good luck!

[Guest guest]

Hi

hey can I ask a favor??? can your daughter INVITE Evan to Lyme teens??? he has

been avoiding Warriors and I doubt he will go to Teens but its worht a try--and

if it makes him cranky at ME for giving the email addy out--so be it

have her email him at evan.russak@...

tell her to go easy...thanks!!!!

Finette

[the gene pool could use a little chlorine!]

[ ] Re: Newbie

Hi (and everyone else),

I joined this list a while ago, but I can't remember if I ever

introduced myself --so I'm afraid I've been lurking. 's post

has prompted me to write...

My daughter is also 16 and has been treating with Dr. (are we

really allowed to use his name on this list?)for about 3 years now.

After being misdiagnosed for over 2 years, Lyme, Babesia and

Bartonella had a lot of opportunity to do their damage.

Unfortunately, she is still not entirely well, but doing considerably

better than she was and we love Dr. . He is the one doctor that

she doesn't mind going to see -- and she still has plenty of them!

She experienced all of the same problems with " friends " totally

forgetting that she existed and the awkwardness associated with that

when she was in and out of school. Everything you said in your email

sounds so much like my daughter and a bunch of other 'Lyme' kids I

know!

While this is probably not the answer for everyone, we ended up

dealing with the school thing by taking her out and home-schooling

her last year. She had found it very frustrating to try to keep up

with her classes with tutors when she was out of school and the rote

lessons being sent home were awful. Even though she liked her tutors,

she didn't really think she was learning anything -- just memorizing.

She has since said that home-schooling is the only good thing that

has come out of Lyme -- and is continuing it this year. She has met

some really great kids in the home-schooling community that are much

more accepting of differences and has made some nice friends. We also

know a couple of other kids with Lyme here in Mass. that do home-

schooling -- which is actually what prompted us to consider it.

Anyway, my daughter is now well enough that she actually wants to

reach out (and has been) to other kids in the same situation -- so I

know she would email your daughter if you would like her to. Just

email me back privately and I'll send you her email address.

She also joined LymeTeens on and has made some email friends

that way. One in particular has become a great friend and I think

it's wonderful that they can really relate to the ins and outs of

life with Lyme. Interestingly, we are headed to Maine for a few days

next week and the only thing she really wanted to know was if she

would have an internet connection so she can get her emails!

Feel free to email me any time -- just put 'Lyme' in the memo field

so you don't get knocked out by my junk mail filter.

Good luck!

[Guest guest]

How much does Dr. Tucker cost typically, say the first year for someone with

advanced Lyme?

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

No problem, Finette. I'm sure she will do it. She has another friend

(a 19 yo boy who got it in utero and whose mom is still sick also)

who would probably be a good connection for him, too.

I know it's hard to know when to push them, but I'm sure it would be

good for him to connect with some other teens. It has really made ALL

the difference for my daughter.

>

> Hi

>

> hey can I ask a favor??? can your daughter INVITE Evan to Lyme

teens??? he has been avoiding Warriors and I doubt he will go to

Teens but its worht a try--and if it makes him cranky at ME for

giving the email addy out--so be it

>

> have her email him at evan.russak@...

> tell her to go easy...thanks!!!!

>

> Finette

>

>

> [the gene pool could use a little chlorine!]