Son with Lyme in Missouri - new to this board

[Guest guest]

At the end of September my son woke me up and said his head hurt

and he didnt feel good I checked his temp and it was 102.5. He also

had stomach pain. I took him in and they said it was probably the

flu. They checked blood count ect.. and it was a little off. The dr

said he will be back to normal in a few days. When he wasnt better

in a few days I called back and took him back in they said his blood

count looked good and give it a few more days. One week went by and

he was still complaining so I called back and they scheduled a ct

scan of his abdomen (since he has always had stomach pain and they

were worried about appendix) which looked normal. While we were

their I noticed a bunch of red bumps on his legs they almost looked

like chigger bites. Later that night I noticed a red ring around all

the bites. I took him into the dr the next day thinking allergic

reaction to the dye from the ct scan. The dr was puzzled and gave

him prednazone. I gave him one dose and started searching the innet

I thought I remembered something about lyme having that type of

marking. What I saw was scary and fit my son to a tee. I also read

not to give prednazone so I called the dr the next day and I told

him what I had found and he saw the rash, he said it was rare and he

didnt think it was lyme. I persuaded him to do the test just incase

and he did and went ahead and gave him some amoxicillin.

After seeing all the info about lyme I made an apt with a llmd.

They kinda freaked me out and I was overwhelmed. They wanted me to

stop meds and wanted to run all kinds of tests, like strep on the

brain. I was like wait a minute I thought we were hear for lyme. A

few days went by and I decided to wait on llmd and see what our

primary care dr did. His test came back positive they said and

extended his amoxicillin to 21 days. I held off on llmd thinking if

I could get him treated thru primary care I would just do that. Well

at day 19 the bullseyes came back and he was getting more and more

weepie. Couldnt make it thru school, he was tiard ect... I called

his primary care dr back he said I needed to take him to childrens

mercy and go thru the er so he could be seen asap. They gave him 10

days worth of zithromax and we took him to childrens mercy and they

said " We dont have lyme in missouri. " (even though they knew his

primary care dr. diagnosed him as having it and the health dpt

recorded my son as having lyme) They lied and said they were doing

testing for other tick born illnesses and didnt. They did a strep

test and said he didnt have strep go back to your primary care dr. "

They did send several nurses in to see what lyme looked like were

their words after the dr saw us and it was apparent they werent

going to do anything and said no lyme in missouri.

We fought and I did get him into a infectious disease dr at

childrens mercy and she backed them up with he didnt have lyme. Told

me that my primary care dr should have followed thru with the

western blot and it was his fault we would never get to the bottom

of it. She would give him the proper lyme test and send it to yale.

She wouldnt discuss his previous lyme test I had because it wasnt

from a reputable lab (in her eyes). It was lab corp and that he

probably had something else like erythema Multiform. Which is a form

of herpies (Which he does not have nor does his rash resemble it).

They called back and said his lyme test was neg and that he had

mycoplasm. But the mycoplasm wouldnt have affected the lyme test and

was something completely different. Which later I found out is a co-

infection. They still wont give me a copy of the labs and didnt do a

western blot. I am fighting them and it's a different story.

We took him to an allergist since we couldnt get his nose to

stop running (new since this all started). He now tested positive

for sever allergies to grass, 2 type of trees and ragweed. He had

been given an allergy screen before and didnt show any sign of

allergies at that time.

I took him to a psychologist because he couldnt stop crying and

was having anxiety attacks. They put him on zoloft and after a few

weeks he is now doing completely better. I know this is just a patch

but it is helping.

I do have an appointment with a llmd springfield this month. I

hope he will say all looks good for now but I am not holding my

breath.

I dont know how long my son has had lyme because he had

multiple bullseyes and some of the neurological problems with it. We

have family in Ny and Pa areas and he has been their but I cant ever

recall taking a tick off him. I hope the the llmd will shead some

light.

Has anyone else had these problems in Missouri ? Any other kids

with multiple bullseyes or neurological problems ?

[Guest guest]

Yes, there are other children who have Lyme in

Missouri and your son could have gotten it from NY or

PA too. The tick can be smaller than a pin head and

many people never get a rash or the bulls eye rash.

The best lab that I know of for Lyme testing is Igenex

in CA. You can look at there website at igenex.com.

Don't let egos get in your way of getting your son

diagnosed and treated properly (sounds like you're

not). I live in Oregon and was misdiagnosed for 15

years because 'we don't have Lyme in Oregon' and then

ended up giving it to my daughters through pregnancy!

Mothers know when something is not right and follow

your gut and your heart and your instincts, if you

think its Lyme your probably right! God bless, Barbara

--- tdocchat <tgensearch@...> wrote:

> At the end of September my son woke me up and said

> his head hurt

> and he didnt feel good I checked his temp and it was

> 102.5. He also

> had stomach pain. I took him in and they said it was

> probably the

> flu. They checked blood count ect.. and it was a

> little off. The dr

> said he will be back to normal in a few days. When

> he wasnt better

> in a few days I called back and took him back in

> they said his blood

> count looked good and give it a few more days. One

> week went by and

> he was still complaining so I called back and they

> scheduled a ct

> scan of his abdomen (since he has always had stomach

> pain and they

> were worried about appendix) which looked normal.

> While we were

> their I noticed a bunch of red bumps on his legs

> they almost looked

> like chigger bites. Later that night I noticed a red

> ring around all

> the bites. I took him into the dr the next day

> thinking allergic

> reaction to the dye from the ct scan. The dr was

> puzzled and gave

> him prednazone. I gave him one dose and started

> searching the innet

> I thought I remembered something about lyme having

> that type of

> marking. What I saw was scary and fit my son to a

> tee. I also read

> not to give prednazone so I called the dr the next

> day and I told

> him what I had found and he saw the rash, he said it

> was rare and he

> didnt think it was lyme. I persuaded him to do the

> test just incase

> and he did and went ahead and gave him some

> amoxicillin.

> After seeing all the info about lyme I made an

> apt with a llmd.

> They kinda freaked me out and I was overwhelmed.

> They wanted me to

> stop meds and wanted to run all kinds of tests, like

> strep on the

> brain. I was like wait a minute I thought we were

> hear for lyme. A

> few days went by and I decided to wait on llmd and

> see what our

> primary care dr did. His test came back positive

> they said and

> extended his amoxicillin to 21 days. I held off on

> llmd thinking if

> I could get him treated thru primary care I would

> just do that. Well

> at day 19 the bullseyes came back and he was getting

> more and more

> weepie. Couldnt make it thru school, he was tiard

> ect... I called

> his primary care dr back he said I needed to take

> him to childrens

> mercy and go thru the er so he could be seen asap.

> They gave him 10

> days worth of zithromax and we took him to childrens

> mercy and they

> said " We dont have lyme in missouri. " (even though

> they knew his

> primary care dr. diagnosed him as having it and the

> health dpt

> recorded my son as having lyme) They lied and said

> they were doing

> testing for other tick born illnesses and didnt.

> They did a strep

> test and said he didnt have strep go back to your

> primary care dr. "

> They did send several nurses in to see what lyme

> looked like were

> their words after the dr saw us and it was apparent

> they werent

> going to do anything and said no lyme in missouri.

> We fought and I did get him into a infectious

> disease dr at

> childrens mercy and she backed them up with he didnt

> have lyme. Told

> me that my primary care dr should have followed thru

> with the

> western blot and it was his fault we would never get

> to the bottom

> of it. She would give him the proper lyme test and

> send it to yale.

> She wouldnt discuss his previous lyme test I had

> because it wasnt

> from a reputable lab (in her eyes). It was lab corp

> and that he

> probably had something else like erythema Multiform.

> Which is a form

> of herpies (Which he does not have nor does his rash

> resemble it).

> They called back and said his lyme test was neg and

> that he had

> mycoplasm. But the mycoplasm wouldnt have affected

> the lyme test and

> was something completely different. Which later I

> found out is a co-

> infection. They still wont give me a copy of the

> labs and didnt do a

> western blot. I am fighting them and it's a

> different story.

> We took him to an allergist since we couldnt

> get his nose to

> stop running (new since this all started). He now

> tested positive

> for sever allergies to grass, 2 type of trees and

> ragweed. He had

> been given an allergy screen before and didnt show

> any sign of

> allergies at that time.

> I took him to a psychologist because he couldnt

> stop crying and

> was having anxiety attacks. They put him on zoloft

> and after a few

> weeks he is now doing completely better. I know this

> is just a patch

> but it is helping.

> I do have an appointment with a llmd

> springfield this month. I

> hope he will say all looks good for now but I am not

> holding my

> breath.

> I dont know how long my son has had lyme

> because he had

> multiple bullseyes and some of the neurological

> problems with it. We

> have family in Ny and Pa areas and he has been their

> but I cant ever

> recall taking a tick off him. I hope the the llmd

> will shead some

> light.

> Has anyone else had these problems in Missouri

> ? Any other kids

> with multiple bullseyes or neurological problems ?

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi

Id like to echo the past post and say absolutely go to a LLMD. Its

funny how politics are...here in the NJ/PA area Ive had reputable

Drs at a prominent children's hospital insist my son couldnt

possibly have lyme and a neuro said that the only Mycoplasma she

recognized was that which caused pneumonia...the arrogance that

causes ignorance is abominable!! and I had with me lab tests of

positive bartonella and Myco, history of a bullseye at age 5,

history of very probable gestational (I was dx soon after his birth

with a plus minus factor of 6 months...the math was obvious) and

STILL had those responses!!when I asked well then what else can it

be??? they said they didnt know!!! Imagine...it couldnt possibly BE

what I had proof of, yet they didnt know what else to call it!!!

Also try to find a support group for Lyme in your state or nearby

states as they have the info on the better Drs to see and even

better who to avoid

as far as the last, most (not all) Infect Dis Drs are also in the

political soup of denying chronic Lyme and Lyme treatments past

whatever their journals tell them--I personally avoid them at all

costs...

Also weepiness and psychological changes go along with Lyme

infections...look up in the main Lyme sites the psych effects of

tick illnesses...Dr B. Fallon wrote a lot in journals on this...and

be careful of antidepressants in kids...they can mess up brain

chemistry and have risk factors that made me decide against them for

my son...and GI sx as well all fit

may I suggest the Lyme Disease Assoc website ( LDA.org I think) and

the ILADS site = Internatl Lyme and Associated diseases

site...google should have them...great place for info on diagnoses,

treatments and even Dr suggestions!!!

good luck

Finette

[Guest guest]

You are so right about mothers knowing. I have the same story. I had Lyme

for about 19 years before I was finally diagnosed. During that time, I had

a baby. Within a week, I knew something wasn't right. By the time she was

18 months they finally stated saying, yes maybe she has cerebral palsy. She

didn't walk until she was two. Then after that, she seemed to catch up and

be OK. Then when she hit puberty, all hell broke. Excuse me, but I know no

nice way to explain it. She had been a very happy child. No problems at

all. Every parent would love to have had her for a daughter. She started

having " fits " . By the time she was 14 she had tried to commit suicide. We

couldn't figure out what was going on. They said she was bi-polar. The

tried antidepressants. Nothing helped. She was just not the child we knew

her to be. Then, fortunately, I happened to be diagnosed around that time

and the doctor suggested we test her and sure enough, she was positive. I

can't say that everything is " dandy " , but she has greatly improved. I'm not

sure that she and I will ever be completely healed, but I don't worry about

her hurting herself any longer. She's learned that she has a disease and

that it causes her to feel things sometimes and she's learning to deal with

it. She has all the usual physical things, pain, etc. but for her the

emotional was the worst.

-- Re: [ ] Son with Lyme in Missouri - new to this

board

Yes, there are other children who have Lyme in

Missouri and your son could have gotten it from NY or

PA too. The tick can be smaller than a pin head and

many people never get a rash or the bulls eye rash.

The best lab that I know of for Lyme testing is Igenex

in CA. You can look at there website at igenex.com.

Don't let egos get in your way of getting your son

diagnosed and treated properly (sounds like you're

not). I live in Oregon and was misdiagnosed for 15

years because 'we don't have Lyme in Oregon' and then

ended up giving it to my daughters through pregnancy!

Mothers know when something is not right and follow

your gut and your heart and your instincts, if you

think its Lyme your probably right! God bless, Barbara

[Guest guest]

Thanks for the support! We visit a llmd on monday. I feel better now

that I have vented.

It just makes me mad to be lied to and mistreated when it comes to my

sons health.

I just got another letter in the mail that said they dont have a copy

of the lab results in his file or on the computer. Why would you hid

something like that ? I called the llmd and said I cant get the test

info they said dont worrie about it and are going to do another test

and send it to ignex (sp?).

God love these little ones who are going thru hell at such a young age.

[Guest guest]

Thanks for the support! We visit a llmd on monday. I feel better now

that I have vented.

It just makes me mad to be lied to and mistreated when it comes to my

sons health.

I just got another letter in the mail that said they dont have a copy

of the lab results in his file or on the computer. Why would you hid

something like that ? I called the llmd and said I cant get the test

info they said dont worrie about it and are going to do another test

and send it to ignex (sp?).

God love these little ones who are going thru hell at such a young age.

[Guest guest]

Bless the parents who have to watch their young ones go through all of this

at such a young age.

Bless the parents who have to fight to get the appropriate care for their

young ones.

Bless the families of these young ones who watch as the family is under

stress from the fight with the professionals, the money to fund the necessary

testing that is required up front because the testing/insurance companies won't

work together on the funding because of beliefs that Lyme doesn't really

exist in this part of the country.

Bless our LLMDs who fight not only the disease in our children but fight

colleagues, disbelief, and questioning because of their findings.

And bless our children who have to live through all of the controversy

surrounding their medical condition.

Families, their community, their schools, and medical communities feel it

necessary to doubt their medical conditions and freely discuss it in front of

our children making it difficult for them to understand why they feel the way

they do and why no one believes them.

Thank God for giving us the strength to fight for our children to receive

the care that they desperately need to be productive citizens in the future.

Jeanette

[Guest guest]

Dear Jeanette, This could not have come at a better time. Thank you! I had a

terriable night with my 6yr old son, he is so scared he will not go into the

bathroom by himself. He wants me to take down all the pictures I have of angels,

and has started teriable OCD symtems. I got on the phone this am right at 8 to

get some help for both of us. He can get in to a psycologist on Friday, maybe or

maybe not I will get some support for him. I am not sure if this is the right

thing to do, but I am desperate. I went off of my antidepressent a couple months

ago, I really didn't think it was helping. I was wrong. My little one is

experienceing leg and knee pain also, has dropped to the floor in pain 3 times

and I have felt this during antibiotic treetment also, but as you said having to

see him go through it is worse. He missed all last week of school and made it a

half a day yesterday. I plan on letting him sleep then get him there again

today, his IEP to get back into special classes is

Fri. also. He has regressed to where he can not even write his first name. I

needed that prayer more then you realize, Thank You for giving me hope for the

day.

Glenda

InRNette@... wrote:

Bless the parents who have to watch their young ones go through all of this

at such a young age.

Bless the parents who have to fight to get the appropriate care for their

young ones.

Bless the families of these young ones who watch as the family is under

stress from the fight with the professionals, the money to fund the necessary

testing that is required up front because the testing/insurance companies won't

work together on the funding because of beliefs that Lyme doesn't really

exist in this part of the country.

Bless our LLMDs who fight not only the disease in our children but fight

colleagues, disbelief, and questioning because of their findings.

And bless our children who have to live through all of the controversy

surrounding their medical condition.

Families, their community, their schools, and medical communities feel it

necessary to doubt their medical conditions and freely discuss it in front of

our children making it difficult for them to understand why they feel the way

they do and why no one believes them.

Thank God for giving us the strength to fight for our children to receive

the care that they desperately need to be productive citizens in the future.

Jeanette

[Guest guest]

Dear tdocchat, I am so sorry I have not been back in touch with you. We have

had things pile up and overload. Did you see the post about the woman in

Colombia, Mo.? She past away last week. She couldn't get help. I do not know if

she knew of our only hope here in MO. being the llmd in Springfield. I went to

Colombia for several visits with several doctors. I have sent them a letter

since telling them of my diagnoses. You are in good hand now, this Dr. will help

your son just as he has mine, and many others from many states. He is a good

Christian man. Hang in there, I'm hanging in there too.

Glenda and Charlie

Warrensburg, Mo.

tdocchat <tgensearch@...> wrote:

Thanks for the support! We visit a llmd on monday. I feel better now

that I have vented.

It just makes me mad to be lied to and mistreated when it comes to my

sons health.

I just got another letter in the mail that said they dont have a copy

of the lab results in his file or on the computer. Why would you hid

something like that ? I called the llmd and said I cant get the test

info they said dont worrie about it and are going to do another test

and send it to ignex (sp?).

God love these little ones who are going thru hell at such a young age.

For up to date information about Lyme disease and the known co-infections

delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

AMEN!!!!

Finette

Re: [ ] Son with Lyme in Missouri - new to this board

Bless the parents who have to watch their young ones go through all of this

at such a young age.

Bless the parents who have to fight to get the appropriate care for their

young ones.

Bless the families of these young ones who watch as the family is under

stress from the fight with the professionals, the money to fund the necessary

testing that is required up front because the testing/insurance companies won't

work together on the funding because of beliefs that Lyme doesn't really

exist in this part of the country.

Bless our LLMDs who fight not only the disease in our children but fight

colleagues, disbelief, and questioning because of their findings.

And bless our children who have to live through all of the controversy

surrounding their medical condition.

Families, their community, their schools, and medical communities feel it

necessary to doubt their medical conditions and freely discuss it in front of

our children making it difficult for them to understand why they feel the way

they do and why no one believes them.

Thank God for giving us the strength to fight for our children to receive

the care that they desperately need to be productive citizens in the future.

Jeanette