Intro

[Guest guest]

Just Diagnosed.

Try this www.psoriagold .com

I got 99% (trunk & limbs) relief after 6 months treatment. Scalp is little bit

difficult. Almost 80-90% relief.

Extremely satisfied because of good improvement in forehead (earlier caused lot

of embarrassment).

Best regards,

[Guest guest]

Hi Sara

Im so sorry to hear that again I must say " welcome to the group " --this is one

group that loves new friends but not so much when it means another child has

been affected!

Unfortunately many of the more experienced Drs handling Lyme ( some call them

LLMDs as in Lyme Literate MDs) wont handle kids. The ONLY pediatric specialist

still around is Dr in Ct.?

A few peds Drs may be willing to work with him as consultant, a few may also be

willing to go by ILADS guidelines rather than the more prohibitive and riskier

IDSA guidelines, but theyre hard to find.

and a few Family Practice Drs with capability of treating children may also be

familiar with proper Lyme treatment and if the case isnt too complex, theyll

handle it well---or possibly seek consult with one of the more Lyme

knowledgeables if and when the case gets difficult.

May I suggest that you contact local support groups and find out who they use

for their kids and especially whom to avoid. Be careful about internet

groups--theyre infiltrated with scammers and marketeers as well as

uncredentialed " healers " selling their fake cures.Some good books and also some

horrible money wasters are out there.

If you email me I can get a list together of local groups for you to contact.

Yes it is costly to seek the advice of a LLMD when almost all dont take

insurance. But its far more costly ( in lost time, in more bodily and health

damages and in emotional turmoil) in the long run to try to hope a non Lyme

knowledgeable Dr will or even can teat the patient.Unfortunately almost all Lyme

knowledgeable Drs cant take insurance--its not that theyre trying to make it

harder or make more money faster--that Lyme diagnosis means oftentimes they wont

be paid at all, face mountains of denials and forms and many have gone out of

business ( lost their medical practices) from the Lyme patients they tried to

help and ended up not being reimbursed by insurance.

Its a shame that the best often must charge more ( lengthier office exams and

visits) and dont/cant accept insurances.?

btw her GI findings arent that rare--lymph adenopathy is very common as is GI

involvement.Some find that warm " beans " ( flax seed pouches or tube socks with

rice, microwaved a bit till warm) help the belly pain.

the 4-6 week cycles of worse symptoms are common as well due to the time it

takes for the spirochete to reproduce, be killed and then the die off products

to be removed from the body.

Also make sure she is tested and evaluated for coinfections--things like to

piggy back with Lyme--babesia, bartonella, mycoplasma, ehrlichia, etc etc

sometimes even if the Lyme is being well treated those other " bugs " can cause

symptoms of their own and need their own type of medicine.

the sooner and best/strongest attack is usually best IMO. and that is best done

by a " LLMD " or a Dr who works with an LLMD or who are themselves very

experoenced with Lyme and who dont just follow IDSA guidelines.

email me at finrussak@... and good luck.

Finette

[ ] Intro

Good afternoon my name is Sara and I live in Greene county NY(upstate) and my 12

year old daughter was dx'ed on June 9th 09 with Lymeshe presented with the

rash,fevor,aches and arthritis pains, photosensitivity....went on cefitin (she

could not handle the doxicycline) for 21 days . She was fine for about 4 weeks

then started up again with all of the symptoms again but this time her gut was

invovled all of the lymph nodes were the size of globe grapes (she had to have a

barium gi)and now she is 1/2 have though her amoxicillian..28 days....and she is

not getting better........not sure what our next move will be maybe a LL MD..but

that will be costly since they do not take insurance.

Sara

[Guest guest]

Hi. There is a program that offers money to have kids treated. Here is a link to

the website and form:

http://www.lymediseaseassociation.org/LymeAidPkg.pdf

They give up to $1000.00 for treatment and testing. I used it when I needed to

get my daughter treated and it was a life saver, literally! I really encourage

you to get her help. Dr. Horowitz is taking new patients again. If you live near

Poughkeepsie, he would be a good choice. His office is in Hyde Park and they are

familiar with the Lyme Aid for Kids program. Fallon is the other person we

see there. He did suggest that if someone comes in with the Lyme Aid for kids

that the office be reminded what it is. It's a really easy form and I doubt

you'd have trouble getting any Lyme Doc. to accept it. Good luck!

Annie

P.S. If you want to know more about Dr. Horowitz his bio is on the ilads.org

site, under officers and directors. He's the VP of the organization. Here's the

link;

http://ilads.org/about_ILADS/officers_directors.html

>

> Good afternoon my name is Sara and I live in Greene county NY(upstate) and my

12 year old daughter was dx'ed on June 9th 09 with Lymeshe presented with the

rash,fevor,aches and arthritis pains, photosensitivity....went on cefitin (she

could not handle the doxicycline) for 21 days . She was fine for about 4 weeks

then started up again with all of the symptoms again but this time her gut was

invovled all of the lymph nodes were the size of globe grapes (she had to have a

barium gi)and now she is 1/2 have though her amoxicillian..28 days....and she is

not getting better........not sure what our next move will be maybe a LL MD..but

that will be costly since they do not take insurance.

> Sara

>

[Guest guest]

Thank you for the welcome THis is a group that I must honestly say is one that

I wised no parent ever had to join. But again thank you

I understand that I need to get my daughter to a LLMD,one beyond her helpfull

doc...I will give a condensed version of my reasons why a good LLmd may not

happen

first-I am on SSD-I am a NYS RN due to problems 15 years ago I can no longer

work

2-thus said since then I have been living at an income below the poverty level

for the country.(14,000$and on that I raised 3 girls sent one to college and the

middle one is in the military)..but I live simply with in my means and have good

friends that offer what they can.

I can not sell my home : the market is bad and my mortage is less than most

rents....so I would be a fool to sell and it was on the market for a few years

no takers..

I am not on welfare,or food stamps I recieve HEAP

I have a garden know how to buy bulk and cook to make it last.

3- I do have savings not much ....but that was intended to buy food during the

winter months starting in oct.

or do I use it to pay the taxes?...

or do I take that money and bring my daughter for one visit to a Doctor?

I know that she needs to be seen by someone that will have a greater idea as to

what is going on

but I have sold everything of value I have no credit no equity in the

home.....friends-have lost there jobs and have there own troubles,family lol

that is not an option.

So this is where I am I know that something must be done and yes soon but dang

it I dont know what.......I understand that the LLMDS need to make money....I do

but you know what one that in my area of NY is going to be a million aire in no

time with the prices that some are charging, so what if you take

medicare/medcaid....i guess that makes the md feel like he is giving back to the

community Yes I am angry that my daughter is sick and a damn good md is close by

and I cant afford to take her there let alone have her seen for follow ups....it

is just to much right now for me to handle this insanity but I am not given the

freedom to have a melt down I must just bit my lip and get on with it

sara

>

> Im so sorry to hear that again I must say " welcome to the group " --this is one

group that loves new friends but not so much when it means another child has

been affected!

>

> Unfortunately many of the more experienced Drs handling Lyme ( some call them

LLMDs as in Lyme Literate MDs) wont handle kids. The ONLY pediatric specialist

still around is Dr in Ct.?

>

> A few peds Drs may be willing to work with him as consultant, a few may also

be willing to go by ILADS guidelines rather than the more prohibitive and

riskier IDSA guidelines, but theyre hard to find.

>

>

>

>

> and a few Family Practice Drs with capability of treating children may also be

familiar with proper Lyme treatment and if the case isnt too complex, theyll

handle it well---or possibly seek consult with one of the more Lyme

knowledgeables if and when the case gets difficult.

>

>

>

>

> May I suggest that you contact local support groups and find out who they use

for their kids and especially whom to avoid. Be careful about internet

groups--theyre infiltrated with scammers and marketeers as well as

uncredentialed " healers " selling their fake cures.Some good books and also some

horrible money wasters are out there.

>

>

>

>

> If you email me I can get a list together of local groups for you to contact.

>

> Yes it is costly to seek the advice of a LLMD when almost all dont take

insurance. But its far more costly ( in lost time, in more bodily and health

damages and in emotional turmoil) in the long run to try to hope a non Lyme

knowledgeable Dr will or even can teat the patient.Unfortunately almost all Lyme

knowledgeable Drs cant take insurance--its not that theyre trying to make it

harder or make more money faster--that Lyme diagnosis means oftentimes they wont

be paid at all, face mountains of denials and forms and many have gone out of

business ( lost their medical practices) from the Lyme patients they tried to

help and ended up not being reimbursed by insurance.

>

>

>

>

> Its a shame that the best often must charge more ( lengthier office exams and

visits) and dont/cant accept insurances.?

>

>

>

>

> btw her GI findings arent that rare--lymph adenopathy is very common as is GI

involvement.Some find that warm " beans " ( flax seed pouches or tube socks with

rice, microwaved a bit till warm) help the belly pain.

>

> the 4-6 week cycles of worse symptoms are common as well due to the time it

takes for the spirochete to reproduce, be killed and then the die off products

to be removed from the body.

>

>

>

>

> Also make sure she is tested and evaluated for coinfections--things like to

piggy back with Lyme--babesia, bartonella, mycoplasma, ehrlichia, etc etc

sometimes even if the Lyme is being well treated those other " bugs " can cause

symptoms of their own and need their own type of medicine.

>

>

>

>

> the sooner and best/strongest attack is usually best IMO. and that is best

done by a " LLMD " or a Dr who works with an LLMD or who are themselves very

experoenced with Lyme and who dont just follow IDSA guidelines.

>

>

>

>

> email me at finrussak@... and good luck.

>

>

>

>

> Finette

>

>

>

>

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>

> [ ] Intro

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> Good afternoon my name is Sara and I live in Greene county NY(upstate) and my

12 year old daughter was dx'ed on June 9th 09 with Lymeshe presented with the

rash,fevor,aches and arthritis pains, photosensitivity....went on cefitin (she

could not handle the doxicycline) for 21 days . She was fine for about 4 weeks

then started up again with all of the symptoms again but this time her gut was

invovled all of the lymph nodes were the size of globe grapes (she had to have a

barium gi)and now she is 1/2 have though her amoxicillian..28 days....and she is

not getting better........not sure what our next move will be maybe a LL MD..but

that will be costly since they do not take insurance.

>

> Sara

>

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>

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[Guest guest]

Hi, my name is and I have a 11 year old with Lymes. I understand what you

are going through. I don't know if this is a possibility or not, but check your

area for Lyme groups. When the rich get infected and join these groups, some of

them help those who can not help themselves. They also try to run fundraisers

with there friends to help people and especially children in need. Hopefully

there are some good people in your area. I will keep you in my prayers.

From: masonjarbeading <masonjarbeading@...>

Subject: Re: [ ] Intro

Date: Thursday, September 10, 2009, 9:20 AM

 

Thank you for the welcome THis is a group that I must honestly say is one that I

wised no parent ever had to join. But again thank you

I understand that I need to get my daughter to a LLMD,one beyond her helpfull

doc...I will give a condensed version of my reasons why a good LLmd may not

happen

first-I am on SSD-I am a NYS RN due to problems 15 years ago I can no longer

work

2-thus said since then I have been living at an income below the poverty level

for the country.(14, 000$and on that I raised 3 girls sent one to college and

the middle one is in the military)..but I live simply with in my means and have

good friends that offer what they can.

I can not sell my home : the market is bad and my mortage is less than most

rents....so I would be a fool to sell and it was on the market for a few years

no takers..

I am not on welfare,or food stamps I recieve HEAP

I have a garden know how to buy bulk and cook to make it last.

3- I do have savings not much ....but that was intended to buy food during the

winter months starting in oct.

or do I use it to pay the taxes?...

or do I take that money and bring my daughter for one visit to a Doctor?

I know that she needs to be seen by someone that will have a greater idea as to

what is going on

but I have sold everything of value I have no credit no equity in the

home.....friends- have lost there jobs and have there own troubles,family lol

that is not an option.

So this is where I am I know that something must be done and yes soon but dang

it I dont know what.......I understand that the LLMDS need to make money....I do

but you know what one that in my area of NY is going to be a million aire in no

time with the prices that some are charging, so what if you take

medicare/medcaid. ...i guess that makes the md feel like he is giving back to

the community Yes I am angry that my daughter is sick and a damn good md is

close by and I cant afford to take her there let alone have her seen for follow

ups....it is just to much right now for me to handle this insanity but I am not

given the freedom to have a melt down I must just bit my lip and get on with it

sara

[Guest guest]

I understand the devastation lyme causes - please look into anything that will

help -

we have gotten credit cards but with huge over 30% interest - many thousands on

those - but, we are getting well -

it's a sad price to pay for your child not to be ill...............

I so understand your pain and anger - I hope you find some kind of peace and a

way to get your child help..........

Sending prayers..............

Diane

________________________________

From: <jdvtoc@...>

Sent: Thursday, September 10, 2009 1:45:54 PM

Subject: Re: [ ] Intro

 

Hi, my name is and I have a 11 year old with Lymes. I understand what you

are going through. I don't know if this is a possibility or not, but check your

area for Lyme groups. When the rich get infected and join these groups, some of

them help those who can not help themselves. They also try to run fundraisers

with there friends to help people and especially children in need. Hopefully

there are some good people in your area. I will keep you in my prayers..

From: masonjarbeading <masonjarbeading>

Subject: Re: [ ] Intro

Date: Thursday, September 10, 2009, 9:20 AM

 

Thank you for the welcome THis is a group that I must honestly say is one that I

wised no parent ever had to join. But again thank you

I understand that I need to get my daughter to a LLMD,one beyond her helpfull

doc...I will give a condensed version of my reasons why a good LLmd may not

happen

first-I am on SSD-I am a NYS RN due to problems 15 years ago I can no longer

work

2-thus said since then I have been living at an income below the poverty level

for the country.(14, 000$and on that I raised 3 girls sent one to college and

the middle one is in the military)..but I live simply with in my means and have

good friends that offer what they can.

I can not sell my home : the market is bad and my mortage is less than most

rents....so I would be a fool to sell and it was on the market for a few years

no takers..

I am not on welfare,or food stamps I recieve HEAP

I have a garden know how to buy bulk and cook to make it last.

3- I do have savings not much ....but that was intended to buy food during the

winter months starting in oct.

or do I use it to pay the taxes?...

or do I take that money and bring my daughter for one visit to a Doctor?

I know that she needs to be seen by someone that will have a greater idea as to

what is going on

but I have sold everything of value I have no credit no equity in the

home.....friends- have lost there jobs and have there own troubles,family lol

that is not an option.

So this is where I am I know that something must be done and yes soon but dang

it I dont know what.......I understand that the LLMDS need to make money....I do

but you know what one that in my area of NY is going to be a million aire in no

time with the prices that some are charging, so what if you take

medicare/medcaid. ...i guess that makes the md feel like he is giving back to

the community Yes I am angry that my daughter is sick and a damn good md is

close by and I cant afford to take her there let alone have her seen for follow

ups....it is just to much right now for me to handle this insanity but I am not

given the freedom to have a melt down I must just bit my lip and get on with it

sara

[Guest guest]

Have you tried LymeAid4Kids?  Amy Tan gives $1,000 to the LLMD toward office

visits to see them.  As far as I know it is a one time deal, but it will at

least be a start for your daughter.  Contact LDA, I'm sure they have all the

info.

 

From: masonjarbeading <masonjarbeading@...>

Subject: Re: [ ] Intro

Date: Thursday, September 10, 2009, 5:20 AM

 

Thank you for the welcome THis is a group that I must honestly say is one that I

wised no parent ever had to join. But again thank you

I understand that I need to get my daughter to a LLMD,one beyond her helpfull

doc...I will give a condensed version of my reasons why a good LLmd may not

happen

first-I am on SSD-I am a NYS RN due to problems 15 years ago I can no longer

work

2-thus said since then I have been living at an income below the poverty level

for the country.(14, 000$and on that I raised 3 girls sent one to college and

the middle one is in the military)..but I live simply with in my means and have

good friends that offer what they can.

I can not sell my home : the market is bad and my mortage is less than most

rents....so I would be a fool to sell and it was on the market for a few years

no takers..

I am not on welfare,or food stamps I recieve HEAP

I have a garden know how to buy bulk and cook to make it last.

3- I do have savings not much ....but that was intended to buy food during the

winter months starting in oct.

or do I use it to pay the taxes?...

or do I take that money and bring my daughter for one visit to a Doctor?

I know that she needs to be seen by someone that will have a greater idea as to

what is going on

but I have sold everything of value I have no credit no equity in the

home.....friends- have lost there jobs and have there own troubles,family lol

that is not an option.

So this is where I am I know that something must be done and yes soon but dang

it I dont know what.......I understand that the LLMDS need to make money....I do

but you know what one that in my area of NY is going to be a million aire in no

time with the prices that some are charging, so what if you take

medicare/medcaid. ...i guess that makes the md feel like he is giving back to

the community Yes I am angry that my daughter is sick and a damn good md is

close by and I cant afford to take her there let alone have her seen for follow

ups....it is just to much right now for me to handle this insanity but I am not

given the freedom to have a melt down I must just bit my lip and get on with it

sara

[Guest guest]

We do not qulify for LymeAde4kids.....that was one of the first places that I

went to. Since she does have insurance from her father(I am divorced) it is a

good coverage...I have to wait and see if this last coruce of antibiotics has

done anything.....I know that the longer I wait that the chances of something

going wrong is high but I can only go day by day

Sara

>

> Have you tried LymeAid4Kids?  Amy Tan gives $1,000 to the LLMD toward office

visits to see them.  As far as I know it is a one time deal, but it will at

least be a start for your daughter.  Contact LDA, I'm sure they have all the

info.

>  

>

>

>

>

>

> From: masonjarbeading <masonjarbeading@...>

> Subject: Re: [ ] Intro

>

> Date: Thursday, September 10, 2009, 5:20 AM

>

>

>  

>

>

>

> Thank you for the welcome THis is a group that I must honestly say is one that

I wised no parent ever had to join. But again thank you

> I understand that I need to get my daughter to a LLMD,one beyond her helpfull

doc...I will give a condensed version of my reasons why a good LLmd may not

happen

> first-I am on SSD-I am a NYS RN due to problems 15 years ago I can no longer

work

> 2-thus said since then I have been living at an income below the poverty level

for the country.(14, 000$and on that I raised 3 girls sent one to college and

the middle one is in the military)..but I live simply with in my means and have

good friends that offer what they can.

> I can not sell my home : the market is bad and my mortage is less than most

rents....so I would be a fool to sell and it was on the market for a few years

no takers..

> I am not on welfare,or food stamps I recieve HEAP

> I have a garden know how to buy bulk and cook to make it last.

> 3- I do have savings not much ....but that was intended to buy food during the

winter months starting in oct.

> or do I use it to pay the taxes?...

> or do I take that money and bring my daughter for one visit to a Doctor?

> I know that she needs to be seen by someone that will have a greater idea as

to what is going on

> but I have sold everything of value I have no credit no equity in the

home.....friends- have lost there jobs and have there own troubles,family lol

that is not an option.

> So this is where I am I know that something must be done and yes soon but dang

it I dont know what.......I understand that the LLMDS need to make money....I do

but you know what one that in my area of NY is going to be a million aire in no

time with the prices that some are charging, so what if you take

medicare/medcaid. ...i guess that makes the md feel like he is giving back to

the community Yes I am angry that my daughter is sick and a damn good md is

close by and I cant afford to take her there let alone have her seen for follow

ups....it is just to much right now for me to handle this insanity but I am not

given the freedom to have a melt down I must just bit my lip and get on with it

> sara

>

[Guest guest]

Can you finish your bach's online?

I'm finishing my last semester right now, on line. It was a life-saver when I had to yank my son out of pub school.

Robin

From: <moien@...>Subject: ( ) Intro Date: Sunday, November 29, 2009, 11:24 AM

Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but

is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. Most recently, he has been "not participating" in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! I'm lost as to what to do. Rural SOuth Dakota is not conducive

to children with disabilities, and I'm frustrated beyond belief. HELP!

[Guest guest]

Well....they can expel but not for the reasons they wanted to. ...a aide...just make sure he likes him/her and that they get along well together. .....this is what i do all day long ...for the past 5 years...we are called Paraprofessionals....I love my job....I love the kids....next year I will get a new assignment as my student is graduating...i have been with him for 4 years and luvin it. I will pray for your son. And, keep advocating! I advocate for my son and my student! LOL! And, for any other student that needs it.

<font face="arial black" color="#bf00bf">Janice Rushen</font>

<font face="Arial Black" color="#bf00bf"></font> & nbsp;

<em><font face="Arial Black" color="#7f007f">"I will try to be open to all avenues of wisdom and hope"</font></em>

From: <@...> Sent: Mon, November 30, 2009 9:38:34 PMSubject: ( ) Re: Intro

Oh, just read this! YAY for principal, sounds like he will work with you on the problems (different avenues, etc.). Keep us updated,> >> > Hi , by "not participating" and having ISS for that reason (only?), I'm guessing he's not doing any work either? Is he behavioral in any way for that ISS? >

[Guest guest]

Hi! My name is and I live in North Dallas. I have two children. My

oldest is 10 and she is NT, my youngest just turned 8 and was diagnosed in March

of 2010 after being misdiagnosed. We've has so much testing and have even gone

so far as to sue the school district to get services for our son (we won out in

mediation). I am just looking to find groups for support and also to have a

sounding board on those days that I want to pull my hair out or have a pity

party. Although few and far between it is always helpful to have an ear that

can understand your challenges.

Glad to have found this group!

[Guest guest]

Hi , my name is Carolyn and I live in North Dallas as well. I am almost afraid to ask, but what school district are you in?? We are in the middle of a battle with LEISD (Little Elm). I have 2 daughters who are nearly 8 (NT) and nearly 4 (whom we believe has AS). We are fighting for services, but it isn't looking good at this point....Carolyn W.From: thorpe.family <thorpe.family@...> Sent: Mon, December 27, 2010 9:27:44 PMSubject: ( ) Intro

Hi! My name is and I live in North Dallas. I have two children. My oldest is 10 and she is NT, my youngest just turned 8 and was diagnosed in March of 2010 after being misdiagnosed. We've has so much testing and have even gone so far as to sue the school district to get services for our son (we won out in mediation). I am just looking to find groups for support and also to have a sounding board on those days that I want to pull my hair out or have a pity party. Although few and far between it is always helpful to have an ear that can understand your challenges.

Glad to have found this group!