Re: question about personality change

[Guest guest]

Hi I already rsponded to one of your sit. about your son but to answer your qu

about your daughter, YES again my daughter had a ton of issues when she was a

toddler.  Yes she also acted out of control with me especially!!  The lyme

makes it harder for a chil to control his ar her behavior.  The drs. told me

she was Adhd umm!! I said no it is Lyme out of control in her tiny little body.

I believe when the kids are little their tiny little bodis are growing quickly,

developing quickly and under a lot of stress.  Its a great enviroment for Lyme

to go crazy and reek havok on the body. I had to put my daughter on prozac in

3rd grade.  It helped so much with her ability to control her moods.  You see

lyme just makes a person have slower reactions and their ability to control

their behaviors   Thats why it looks like ADHD!!!  After a long course of

antibiotics and VITAMINS  she is better please don't rule out the natural ways

of treating these kids

lots of vit c,d B12 olive leaf  magnesium low dose naltrexone (for any

painetc..) Another good web is guardian of edan good products also google

ldn.org great info on med. hope this helps a bit

________________________________

From: Beth Freishtat <beth@...>

Sent: Wed, May 19, 2010 1:10:23 AM

Subject: [ ] question about personality change

 

My 5 year old daughter was infected with Lyme and co-infections summer

'08. She's been on Azith since and started Mepron 4 months into

treatment. She was doing so well Dr. J and Dr. H took her off the

Mepron. She immediately showed symptoms so she went back on. The two

months later she had been symptom free so they again took her off.

Since she has been having more pains and so she most likely needs to

go back on. I have two questions: 1) How long have your kids stayed on

Mepron? It seems to be endless and maybe we're making a mistake when

we keep taking her off. Do any of your kids relapse when you take them

off? 2) Tali turns into this kid I barely recognize in the evenings --

totally manic, hyper, super goofy, not listening, more aggressive with

her little brother, more needy and totally not behaving. To me it

seems this is Lyme/Babesia related, however she ONLY does this with me

and ONLY when I have not seen her all day. So I don't know if I am

using Lyme to cover what is really just a pre-schooler acting out

because she misses her mommy who works incredibly long days and sees

her only one hour before bed (I work a 4-day work week 10 hrs a day

with a 2 hr commute...and no, there is no choice in this matter. I am

a single mom with two sick kids and a gazillion medical bills). You

see my dilemma though? My real question is: " Can personality change

that IS caused by the disease(s) only manifest in certain situations? "

Everyone keeps telling me it's not the Lyme since it only happens with

me and only in the evenings (not weekends etc.).Of course the

increased leg pain is the convincing factor for me, along with my gut,

but I know Mepron is a tough medicine and it worries me to keep her on

long term.

Thanks so much

(now in another post I am going to ask about my son...oiy!)

Beth

[Guest guest]

definitely is the answer.  My daughter gets a lot worse in the evenings by the

way, as far as behavior stuff.  I imagine all you need is the suggestion of new

medication, but my daughter's neuropsych symptoms are controlled by ADHD meds (a

patch that helps her focus and brings down hyperactivity).  You might be able

to see if your daughter can come down on her own, but more likely she keeps it

together until she sees you, as you are the " safe " one.  This would mean that

it is all she can do to keep it together other times.  I would not discount the

Lyme and co as a major factor in her behavior.  It really sounds like my

daughter, and I can see the difference on and off Daytrana (sometimes she can go

without a patch for days, but when she starts herxing or changes meds it's a

nightmare without it).

You have quite a challenge.  I hope you give yourself credit for what you are

doing.  It's heroic. 

Natasha

From: Beth Freishtat <beth@...>

Subject: [ ] question about personality change

Date: Tuesday, May 18, 2010, 10:10 PM

 

My 5 year old daughter was infected with Lyme and co-infections summer

'08. She's been on Azith since and started Mepron 4 months into

treatment. She was doing so well Dr. J and Dr. H took her off the

Mepron. She immediately showed symptoms so she went back on. The two

months later she had been symptom free so they again took her off.

Since she has been having more pains and so she most likely needs to

go back on. I have two questions: 1) How long have your kids stayed on

Mepron? It seems to be endless and maybe we're making a mistake when

we keep taking her off. Do any of your kids relapse when you take them

off? 2) Tali turns into this kid I barely recognize in the evenings --

totally manic, hyper, super goofy, not listening, more aggressive with

her little brother, more needy and totally not behaving. To me it

seems this is Lyme/Babesia related, however she ONLY does this with me

and ONLY when I have not seen her all day. So I don't know if I am

using Lyme to cover what is really just a pre-schooler acting out

because she misses her mommy who works incredibly long days and sees

her only one hour before bed (I work a 4-day work week 10 hrs a day

with a 2 hr commute...and no, there is no choice in this matter. I am

a single mom with two sick kids and a gazillion medical bills). You

see my dilemma though? My real question is: " Can personality change

that IS caused by the disease(s) only manifest in certain situations? "

Everyone keeps telling me it's not the Lyme since it only happens with

me and only in the evenings (not weekends etc.).Of course the

increased leg pain is the convincing factor for me, along with my gut,

but I know Mepron is a tough medicine and it worries me to keep her on

long term.

Thanks so much

(now in another post I am going to ask about my son...oiy!)

Beth

[Guest guest]

My girls personality changes due to the lyme - now not everything is due to lyme

alot is also due to not feeling good - and yes, you are the safe one for your

child - my kids do the same thing.........they have melt down only with

me.........it's hard but I thank God that they can let out some of the pain they

are feeling and not keep it in ........... with my girls also, giving them

snacks help so much - especially if they are really melting down - a good juice

and snack helps alot...........

Bless you - this is one of the hardest things to go though EVER!! 

peace - Diane

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Wed, May 19, 2010 7:35:41 AM

Subject: Re: [ ] question about personality change

 

definitely is the answer.  My daughter gets a lot worse in the evenings by the

way, as far as behavior stuff.  I imagine all you need is the suggestion of new

medication, but my daughter's neuropsych symptoms are controlled by ADHD meds (a

patch that helps her focus and brings down hyperactivity).  You might be able

to see if your daughter can come down on her own, but more likely she keeps it

together until she sees you, as you are the " safe " one.  This would mean that

it is all she can do to keep it together other times.  I would not discount the

Lyme and co as a major factor in her behavior.  It really sounds like my

daughter, and I can see the difference on and off Daytrana (sometimes she can go

without a patch for days, but when she starts herxing or changes meds it's a

nightmare without it).

You have quite a challenge.  I hope you give yourself credit for what you are

doing.  It's heroic. 

Natasha

From: Beth Freishtat <beth@...>

Subject: [ ] question about personality change

Date: Tuesday, May 18, 2010, 10:10 PM

 

My 5 year old daughter was infected with Lyme and co-infections summer

'08. She's been on Azith since and started Mepron 4 months into

treatment. She was doing so well Dr. J and Dr. H took her off the

Mepron. She immediately showed symptoms so she went back on. The two

months later she had been symptom free so they again took her off.

Since she has been having more pains and so she most likely needs to

go back on. I have two questions: 1) How long have your kids stayed on

Mepron? It seems to be endless and maybe we're making a mistake when

we keep taking her off. Do any of your kids relapse when you take them

off? 2) Tali turns into this kid I barely recognize in the evenings --

totally manic, hyper, super goofy, not listening, more aggressive with

her little brother, more needy and totally not behaving. To me it

seems this is Lyme/Babesia related, however she ONLY does this with me

and ONLY when I have not seen her all day. So I don't know if I am

using Lyme to cover what is really just a pre-schooler acting out

because she misses her mommy who works incredibly long days and sees

her only one hour before bed (I work a 4-day work week 10 hrs a day

with a 2 hr commute...and no, there is no choice in this matter. I am

a single mom with two sick kids and a gazillion medical bills). You

see my dilemma though? My real question is: " Can personality change

that IS caused by the disease(s) only manifest in certain situations? "

Everyone keeps telling me it's not the Lyme since it only happens with

me and only in the evenings (not weekends etc.).Of course the

increased leg pain is the convincing factor for me, along with my gut,

but I know Mepron is a tough medicine and it worries me to keep her on

long term.

Thanks so much

(now in another post I am going to ask about my son...oiy!)

Beth

[Guest guest]

My youngest used to act like that when she was 5-6 and going through

treatment.  She only had Lyme.  She has not been on meds for over a year now

and is 10 but sometimes she still acts that way.  It is hard to tell whether

its just her personality or it is Lyme symptoms returning but I remember when I

talked with Dr J about it (she also had questionable OCD issues) he asked 'if I

ask her to stop does she stop or does she get upset and continues the

behavior?'  In my daughters case she was the former, she could stop if I asked

her or diverted her energy to something different, so he felt it wasn't Lyme

related.

Also, my eldest had Lyme and Mycoplasma Fermentens which causes severe anxiety

and Dr. J said can cause psychosis in kids.  Once the MF was treated the severe

anxiety went away although she still is somewhat of an 'anxious' person but so

is her Dad so to me the MF/Lyme just electrified her normal somewhat anxious

personality and now I don't think her very mild anxiety is due to the disease

anymore.

Lastly, I had Lyme/Babesia/Bartonella and I was on Mepron for a long time but

began gagging it after taking it for so long, I could barely get it down.  My

doctor switched me to a pill called Malarone which is used for Malaria, maybe

you can use on kids? The pill is small and easy to swallow.    In Good

Health! Barb

From: Beth Freishtat <beth@...>

Subject: [ ] question about personality change

Date: Tuesday, May 18, 2010, 10:10 PM

 

My 5 year old daughter was infected with Lyme and co-infections summer

'08. She's been on Azith since and started Mepron 4 months into

treatment. She was doing so well Dr. J and Dr. H took her off the

Mepron. She immediately showed symptoms so she went back on. The two

months later she had been symptom free so they again took her off.

Since she has been having more pains and so she most likely needs to

go back on. I have two questions: 1) How long have your kids stayed on

Mepron? It seems to be endless and maybe we're making a mistake when

we keep taking her off. Do any of your kids relapse when you take them

off? 2) Tali turns into this kid I barely recognize in the evenings --

totally manic, hyper, super goofy, not listening, more aggressive with

her little brother, more needy and totally not behaving. To me it

seems this is Lyme/Babesia related, however she ONLY does this with me

and ONLY when I have not seen her all day. So I don't know if I am

using Lyme to cover what is really just a pre-schooler acting out

because she misses her mommy who works incredibly long days and sees

her only one hour before bed (I work a 4-day work week 10 hrs a day

with a 2 hr commute...and no, there is no choice in this matter. I am

a single mom with two sick kids and a gazillion medical bills). You

see my dilemma though? My real question is: " Can personality change

that IS caused by the disease(s) only manifest in certain situations? "

Everyone keeps telling me it's not the Lyme since it only happens with

me and only in the evenings (not weekends etc.).Of course the

increased leg pain is the convincing factor for me, along with my gut,

but I know Mepron is a tough medicine and it worries me to keep her on

long term.

Thanks so much

(now in another post I am going to ask about my son...oiy!)

Beth

[Guest guest]

The Lymes definitely changed my son's personality until he was treated

for several months. He took Zithromax and Amoxil but this was 7

years ago. They give different stuff now. That being said, I think

the treatment worked pretty good. If there are any dormants left, we

haven't seen them resurface. I do however freak out on the inside a

little anytime he complains about something that would be a symptom

like his joints hurting. I'm sure her treatment is also making her

normal sensitivities and insecurities more evident or exaggerated in

the evenings.

The problem with them being in pain after treatment is that you don't

know if that pain is still active Lymes or is damage done by the Lymes

or growing pains due to the fact that their joints were compromised by

the Lymes. One thing I learned is that most all Lymes patients are

deficient or anemic in certain vitamins and/or minerals. Sometimes

you have to be your own advocate. Sometimes our doctors

unintentionally have blinders on treating so many patients at once.

So, take charge of your own health and your childs. Do research and

ask your doctor to do the tests that you want the answers to. They

hate it but too bad. I ask them to periodically test ALL my vitamins

and minerals and hormones. Don't think they are doing that, they

don't. They are not all included on the standard testing. For

example, I found out that almost every Lymie is deficient in

Magnesium. It's very important that you find out because that will

let your bones degenerate which could be why your child is hurting!

If I don't take it everyday my joints start hurting a lot more. It's

one of those I will have to take forever. B-Complex is another one.

That darn bacteria is damaging your cells to try to stay alive. Some

of them can be regenerated but some of our organs or systems can be

left damaged. You also have to determine what if any permanent damage

has your infection, whether it be Lymes or Babesia, etc. has left you

with? Your gonna be better after treatment but your not going to be

perfect. You're going to have to do damage control with your health.

Eat better for the rest of your life, etc. I was left with

insufficient adrenals and kidney damage. I have to constantly keep a

handle on that all myself with the help of my doctors because none of

them seem to know as much as I do about it. Nor do they recognize the

symptoms without me telling them what is wrong, etc. That's just the

way life is for us.

Good luck,

Suzanne

On May 19, 2010, at 12:10 AM, Beth Freishtat wrote:

> My 5 year old daughter was infected with Lyme and co-infections summer

> '08. She's been on Azith since and started Mepron 4 months into

> treatment. She was doing so well Dr. J and Dr. H took her off the

> Mepron. She immediately showed symptoms so she went back on. The two

> months later she had been symptom free so they again took her off.

> Since she has been having more pains and so she most likely needs to

> go back on. I have two questions: 1) How long have your kids stayed on

> Mepron? It seems to be endless and maybe we're making a mistake when

> we keep taking her off. Do any of your kids relapse when you take them

> off? 2) Tali turns into this kid I barely recognize in the evenings --

> totally manic, hyper, super goofy, not listening, more aggressive with

> her little brother, more needy and totally not behaving. To me it

> seems this is Lyme/Babesia related, however she ONLY does this with me

> and ONLY when I have not seen her all day. So I don't know if I am

> using Lyme to cover what is really just a pre-schooler acting out

> because she misses her mommy who works incredibly long days and sees

> her only one hour before bed (I work a 4-day work week 10 hrs a day

> with a 2 hr commute...and no, there is no choice in this matter. I am

> a single mom with two sick kids and a gazillion medical bills). You

> see my dilemma though? My real question is: " Can personality change

> that IS caused by the disease(s) only manifest in certain situations? "

> Everyone keeps telling me it's not the Lyme since it only happens with

> me and only in the evenings (not weekends etc.).Of course the

> increased leg pain is the convincing factor for me, along with my gut,

> but I know Mepron is a tough medicine and it worries me to keep her on

> long term.

> Thanks so much

> (now in another post I am going to ask about my son...oiy!)

> Beth

>

>

[Guest guest]

My son's personality changes like the wind as well. He was misdiagnosed with

bipolar disorder. He only has lyme(no coinfections)

Hugs

Judy

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Wed, May 19, 2010 8:35:41 AM

Subject: Re: [ ] question about personality change

 

definitely is the answer.  My daughter gets a lot worse in the evenings by the

way, as far as behavior stuff.  I imagine all you need is the suggestion of new

medication, but my daughter's neuropsych symptoms are controlled by ADHD meds (a

patch that helps her focus and brings down hyperactivity).  You might be able

to see if your daughter can come down on her own, but more likely she keeps it

together until she sees you, as you are the " safe " one.  This would mean that

it is all she can do to keep it together other times.  I would not discount the

Lyme and co as a major factor in her behavior.  It really sounds like my

daughter, and I can see the difference on and off Daytrana (sometimes she can go

without a patch for days, but when she starts herxing or changes meds it's a

nightmare without it).

You have quite a challenge.  I hope you give yourself credit for what you are

doing.  It's heroic. 

Natasha

From: Beth Freishtat <beth@...>

Subject: [ ] question about personality change

Date: Tuesday, May 18, 2010, 10:10 PM

 

My 5 year old daughter was infected with Lyme and co-infections summer

'08. She's been on Azith since and started Mepron 4 months into

treatment. She was doing so well Dr. J and Dr. H took her off the

Mepron. She immediately showed symptoms so she went back on. The two

months later she had been symptom free so they again took her off.

Since she has been having more pains and so she most likely needs to

go back on. I have two questions: 1) How long have your kids stayed on

Mepron? It seems to be endless and maybe we're making a mistake when

we keep taking her off. Do any of your kids relapse when you take them

off? 2) Tali turns into this kid I barely recognize in the evenings --

totally manic, hyper, super goofy, not listening, more aggressive with

her little brother, more needy and totally not behaving. To me it

seems this is Lyme/Babesia related, however she ONLY does this with me

and ONLY when I have not seen her all day. So I don't know if I am

using Lyme to cover what is really just a pre-schooler acting out

because she misses her mommy who works incredibly long days and sees

her only one hour before bed (I work a 4-day work week 10 hrs a day

with a 2 hr commute...and no, there is no choice in this matter. I am

a single mom with two sick kids and a gazillion medical bills). You

see my dilemma though? My real question is: " Can personality change

that IS caused by the disease(s) only manifest in certain situations? "

Everyone keeps telling me it's not the Lyme since it only happens with

me and only in the evenings (not weekends etc.).Of course the

increased leg pain is the convincing factor for me, along with my gut,

but I know Mepron is a tough medicine and it worries me to keep her on

long term.

Thanks so much

(now in another post I am going to ask about my son...oiy!)

Beth

[Guest guest]

I have two teens that have been in treatment for 2 1/2 years. They have

probably had this for many more years. I have to believe that personality

changes are not only because they hurt, are taking lots of meds but they are

also losing out on their lives, and they know it. I hear about Lyme rage

and although I do not think my girls have been there yet, I can imagine why

it would happen. What I see is the hopelessness that my girls feel on a

daily basis. What they are missing, what friends are forgetting them and

what they will never be able to get back. This is a horrible disease and it

is a horrible way to grow up. All we can do is love them and instill good

values. We can help them dream of better days and we can advocate for them.

Advocating is a loose word because I am shocked and amazed on a daily basis

what our school system is doing to us. The people that my girls should be

looking up to are hurting them with their education. I am the one with the

rage. It may be different with teens because they are so close to

succeeding but are stopped in their tracks, but I can imagine for anyone

with this disease, it robs them of their life. It's not fair and it's

inhumane what is happening. Just love them and if they have good days praise

them and make sure they enjoy whatever they are doing.

I broke down this week and took my oldest, she just turned 18 and has had

Lyme and co's for 6 years but just diagnosed in November 2008 to learn about

the GED. She use to be a great student at a private prep school and then

lyme hit. We moved her to the public school in hopes of getting services.

They have treated me (because they have never meet my daughter), like she

has done something wrong. They will not budge from all the paperwork they

give the " normal students " , and they have grown to hate me because I

advocate. Anyway, I have fought this a long time and I know my daughters

are bright and the school is treating them wrong. We have been taken to

court for truancy even though the school had all the doctors letters. We

won somewhat because the judge has Lyme disease and reamed the truancy

officer for harassing us, but that's as far as it went. We had Child

Protective Services called on us by the school because I cancelled two

tutoring sessions because my father passed away and although I know it was

not the tutors, it was the school. They have taken away everything that has

worked and have not supported what we think will. It has been a nightmare.

Anyway I asked the Superintendent for a GED study course so my oldest could

study when she felt well. I wanted to get some of her self esteem back. It

was free through our state and he denied her that one concession. This week

I took her for a GED pretest and she blew it away. The person in charge was

so nice and was amazed that my daughter did as well as she did. This is a

child that had her education pretty much stop after 9th grade because the

school denied her services.

Anyway, I know I am ranting but Lyme and coinfections rob our children of

so much and it is up to us to go outside the box to get them help. So my

daughter gives up her dream of going to a four year college today. It is

totally against what we planned, but if she passes the GED like she did the

pretest and goes to a community college for two or three or four years and

does well, she can transfer into that dream college and no body cares.

Except of course her father and I that have spent our entire savings and

retirement fighting this disease, but we will get her there somehow. Just

love your kids. If you live in our county (Fairfax, VA), I would op to home

school them and enjoy more positive experiences. Do what ever you can to

build up or support their self esteem. If you have Lyme and coinfections as

well, ask your friends and neighbors for help. Tell them what you need

because they have no idea what you are going through.

We try to rejoice every positive thing we can, but it is hard, because

unless you get it you don't get it.

Farrell

lesliebfarrell@...

[Guest guest]

- THANK YOU - my daughters fight with the school system just

started.........it's terrible how they treat these kids and us for advocating

for them!!!!  My heart goes out to you so much - and yes my girls know that no

matter what one day they will be able to live there dream.......it is just a

different route we have to take then what we planned........and I tell my girls

that maybe we are going through this to save others from this disease........if

someone wouldn't of saved us I am not sure where we would be....and if we can

help others in the future then that is what we will do........Bless you and stay

strong...........I feel your pain........and feel your rage.......

I love the " unless you get it you don't get it!! "   How true those words

are...............this disease has no limits.........and the children...it's not

fair but these kids are far wiser then anyone standing in there way no matter

how sick they are!!

Peace and Love!!  Diane

________________________________

From: Farrell <lesliebfarrell@...>

Sent: Wed, May 19, 2010 9:45:54 PM

Subject: Re: [ ] question about personality change

 

I have two teens that have been in treatment for 2 1/2 years. They have

probably had this for many more years. I have to believe that personality

changes are not only because they hurt, are taking lots of meds but they are

also losing out on their lives, and they know it. I hear about Lyme rage

and although I do not think my girls have been there yet, I can imagine why

it would happen. What I see is the hopelessness that my girls feel on a

daily basis. What they are missing, what friends are forgetting them and

what they will never be able to get back. This is a horrible disease and it

is a horrible way to grow up. All we can do is love them and instill good

values. We can help them dream of better days and we can advocate for them.

Advocating is a loose word because I am shocked and amazed on a daily basis

what our school system is doing to us. The people that my girls should be

looking up to are hurting them with their education. I am the one with the

rage. It may be different with teens because they are so close to

succeeding but are stopped in their tracks, but I can imagine for anyone

with this disease, it robs them of their life. It's not fair and it's

inhumane what is happening. Just love them and if they have good days praise

them and make sure they enjoy whatever they are doing.

I broke down this week and took my oldest, she just turned 18 and has had

Lyme and co's for 6 years but just diagnosed in November 2008 to learn about

the GED. She use to be a great student at a private prep school and then

lyme hit. We moved her to the public school in hopes of getting services.

They have treated me (because they have never meet my daughter), like she

has done something wrong. They will not budge from all the paperwork they

give the " normal students " , and they have grown to hate me because I

advocate. Anyway, I have fought this a long time and I know my daughters

are bright and the school is treating them wrong. We have been taken to

court for truancy even though the school had all the doctors letters. We

won somewhat because the judge has Lyme disease and reamed the truancy

officer for harassing us, but that's as far as it went. We had Child

Protective Services called on us by the school because I cancelled two

tutoring sessions because my father passed away and although I know it was

not the tutors, it was the school. They have taken away everything that has

worked and have not supported what we think will. It has been a nightmare.

Anyway I asked the Superintendent for a GED study course so my oldest could

study when she felt well. I wanted to get some of her self esteem back. It

was free through our state and he denied her that one concession. This week

I took her for a GED pretest and she blew it away. The person in charge was

so nice and was amazed that my daughter did as well as she did. This is a

child that had her education pretty much stop after 9th grade because the

school denied her services.

Anyway, I know I am ranting but Lyme and coinfections rob our children of

so much and it is up to us to go outside the box to get them help. So my

daughter gives up her dream of going to a four year college today. It is

totally against what we planned, but if she passes the GED like she did the

pretest and goes to a community college for two or three or four years and

does well, she can transfer into that dream college and no body cares.

Except of course her father and I that have spent our entire savings and

retirement fighting this disease, but we will get her there somehow. Just

love your kids. If you live in our county (Fairfax, VA), I would op to home

school them and enjoy more positive experiences. Do what ever you can to

build up or support their self esteem. If you have Lyme and coinfections as

well, ask your friends and neighbors for help. Tell them what you need

because they have no idea what you are going through.

We try to rejoice every positive thing we can, but it is hard, because

unless you get it you don't get it.

Farrell

lesliebfarrell@...