Re: will it ever stop?!

[Guest guest]

Hi L,

Sorry to hear that you're feeling so bad...I empathize with you over

your daughter's dx...however, I believe the WB Igm bands show recent

infection vs. previous infection...so it looks as if you caught it

earlier rather than later. My daughter was 9 when dx'd and did well on

Amoxycillan, that is, when they gave it to her for a long enough period

of time...no 3 weeks!

Take care, Joan LI, NY

[Guest guest]

Dear : I felt the pain of your letter deep within my heart. I have

been where you are. I was diagnosed in August 98, and it took until

February 99 to diagnose my 2 children and husband with lyme. My 8th

grade son had to have an IV and wear a tube sock over his arm. And my

6th grade daughter lost 15 lbs. and looked really, really tired. They

both tested positive for babesia as well.

As of today, my son had to limp academically to the end of the

school year[he was in the " Gifted " program in our state], and take a

medical excuse for Algebra I. He just started Algebra I in summer

school and just got back his homework assignments - all 99's plus extra

credit! I'm hoping this is a trend and he keeps on improving, although

he is still tired. My daughter now seems fine, as does my husband.

We'll probably stop their meds at the end of July.

Blessings to you . Please e-mail me privately if you wish.

Lovette

[Guest guest]

hi lisa,

my 10 yo daughter has lyme. we have been through hell the past year. when

this all started we were told our son needed to go to a special needs

school, that public school would not be good for him. i remember not being

able to put my mind around that reality... it was too much to bear. boy did

i get a wake-up the next 8 months!

meredith had a rule out schizophrenia dx, a tentative mitochondrial myopathy

(fatal) dx and now lyme. each stage i would think oh my God, not that. it

can't be worse than that... then there were times i was WISHING for schizo.

she was so sick... at least we could do something if it was schizophrenia...

you are entering the beginning of grieving. you may at times think you

can't make it, can't possibly make it. it is too much to bear. you are

right, it is too much to bear, but you can and will make it. being sick

yourself is so unfair. please try to get support and allow yourself to

grieve. grief will make you sicker if you deny it.

grieving is a process. if you want more info on the stages of grieving let

me know.

please feel free to email me.

i pray for peace, hope and health for you and your daughter,

kay

massachusetts

[Guest guest]

>>> My daughter was 9 when dx'd and did well on

Amoxycillan, that is, when they gave it to her for a long enough period

of time...no 3 weeks!

Take care, Joan LI, NY<<<

hi joan,

my daughter, who just turned 10, is on 2000 mg. oral amox. daily with

tetracycline in her future.

she has been infected for years (same old 15 doctors, 4 years, etc.)

did your daughter get WELL with amox? was it early stage infection? was she

coinfected?

thanks joan.

peace,

kay

MASS

[Guest guest]

Dear ,

I can really understand how you feel. As I have said many times, being

sick ourselves then finding out that our children are sick just about takes

you over the edge. No mother can stand the thought of this. Our two

daughters are doing WELL> I think you need hope now. Krissy was only 10 when

she got sick and went on IV meds, She had a slight relapse (or new bite?) 2

tears ago but is OK after being tx with orals. Jessie got sick the summer

right before she left for college and had to be put on IV meds. She seems ok

now (2 years ago) too but I worry all the time because I can never be sure

that " it " won't come back I live through each ache and pain and headache

they have and know that " college " life isn't the best for rest and good

nutrition and no stress.. Just offering some hope though. I remember exactly

where I was, who I was with, every detail about the very moment that I found

out that my daughters had to be tx for Lyme--the one thing I couldn't

protect them from!! I would be happy to help you anytime. We are in an

" extra special group " aren't we? My girls have follow up visits about every

6 months--quite an ordeal when your kids are older and a weekend party seems

more important than like itself. So far, they are ok with this because they

know how much I need it---for them. I take one day at a time, sometimes one

minute at a time. It's a tough one but this group has been great. Use us! I

am herxing bigtime too. Just upped Claforan to 9 grams 4 days a week from 6

grams 5 days a week==soon--12 grams 3 days a week. I plan to be best friends

with my bed for days to come. Love and prayers to all of you.

Your friend in northern NJ

Helen

lc lott wrote:

> From: lc lott <lclott@...>

>

> Hi all-

> Havent been posting much but have been reading the posts and as energy

> permits have been responding.

> I am in the middle of the HERX from hell I think and to add a little

> stress to that (like I need anymore) just got a call from my LLD. My

> daughters WB came back positive. We didnt get into alot of detail on

> the phone and she goes with me on the 9th to discuss treatment options.

> Needless to say she is hysterical and is afraid she is going to get

> like me and also is afraid she will have to have a line put in. (She

> almost passed out when they drew blood)

> Hopefully we can treat her with orals and see how she does. Had my MRI

> yesterday and have my SPECT and ECHO tomorrow.

> I am so upset about my daughter i dont even know how to express it.

> Just know that as soon as the nurse called and said he wanted to see

> her and she had that " its not good news " tone of voice I begged her to

> tell me on the phone. Just told me that WB was positive for IgM and

> that he wrote to make an appt for treatment options.

> I have been going downhill since. Headache is worse. Am so dizzy I cant

> see straight. Nothing like a little stress to help things along. Am

> getting ready to do my infusion so hopefully will get a few hours of

> sleep. The Rocephin always seems to knock me out.

> Sorry this is so long but neede to come to my safe place to vent some

> feelings.

> Love to all

> L(MI)

>

> _________________________________________________________

>

[Guest guest]

Hi Kay,

When my daughter was dx'd in '89, they didn't know how long before that

she was infected. I believe it was at least a yr. and probably 2. She

was not tested for coinfections, but I assume it was " only " LD, because

of her symptoms and eventual recovery.

She was on Amoxy only (much less than your daughter) and for only 3

weeks at a time. I truly believe that she would have recovered yrs.

sooner if they had just increased her dosage, and given her the Amoxy

for a longer stretch. I also believe that the Biaxin that she later took

for sinus infections also helped.

Her ENT and ID specialist also felt that her tonsils were no longer

filtering germs, but were clogged with them. She had them out when she

was 17, and that helped her health in general. Hang in

there...things will improve. My Best, Joan

[Guest guest]

--- liveitup <liveitup@...> wrote:

> From: liveitup <liveitup@...>

>

> Dear ,

> I can really understand how you feel. As I have

> said many times, being

> sick ourselves then finding out that our children

> are sick just about takes

> you over the edge. No mother can stand the thought

> of this. Our two

> daughters are doing WELL> I think you need hope now.

> Krissy was only 10 when

> she got sick and went on IV meds, She had a slight

> relapse (or new bite?) 2

> tears ago but is OK after being tx with orals.

> Jessie got sick the summer

> right before she left for college and had to be put

> on IV meds. She seems ok

> now (2 years ago) too but I worry all the time

> because I can never be sure

> that " it " won't come back I live through each ache

> and pain and headache

> they have and know that " college " life isn't the

> best for rest and good

> nutrition and no stress.. Just offering some hope

> though. I remember exactly

> where I was, who I was with, every detail about the

> very moment that I found

> out that my daughters had to be tx for Lyme--the one

> thing I couldn't

> protect them from!! I would be happy to help you

> anytime. We are in an

> " extra special group " aren't we? My girls have

> follow up visits about every

> 6 months--quite an ordeal when your kids are older

> and a weekend party seems

> more important than like itself. So far, they are ok

> with this because they

> know how much I need it---for them. I take one day

> at a time, sometimes one

> minute at a time. It's a tough one but this group

> has been great. Use us! I

> am herxing bigtime too. Just upped Claforan to 9

> grams 4 days a week from 6

> grams 5 days a week==soon--12 grams 3 days a week. I

> plan to be best friends

> with my bed for days to come. Love and prayers to

> all of you.

> Your friend in northern NJ

> Helen

>

> Helen-

Thanks for the encouragement. I have a hard enough time dealing with

this illness myself and all the doubts and questions about when/if we

are ever really cured. But for my daughter who is only 14 and has a

long life yet(not that i dont) it just devastates me.

I just dont want her to go thru all the BS that we are all going thru.

I guess time will tell.

L(MI)

> >

> _________________________________________________________

> >

[Guest guest]

--- Kay <b10g7@...> wrote:

> From: " Kay " <b10g7@...>

>

> hi lisa,

>

> my 10 yo daughter has lyme. we have been through

> hell the past year. when

> this all started we were told our son needed to go

> to a special needs

> school, that public school would not be good for

> him. i remember not being

> able to put my mind around that reality... it was

> too much to bear. boy did

> i get a wake-up the next 8 months!

>

> meredith had a rule out schizophrenia dx, a

> tentative mitochondrial myopathy

> (fatal) dx and now lyme. each stage i would think oh

> my God, not that. it

> can't be worse than that... then there were times i

> was WISHING for schizo.

> she was so sick... at least we could do something if

> it was schizophrenia...

>

> you are entering the beginning of grieving. you may

> at times think you

> can't make it, can't possibly make it. it is too

> much to bear. you are

> right, it is too much to bear, but you can and will

> make it. being sick

> yourself is so unfair. please try to get support and

> allow yourself to

> grieve. grief will make you sicker if you deny it.

>

> grieving is a process. if you want more info on the

> stages of grieving let

> me know.

>

> please feel free to email me.

>

> i pray for peace, hope and health for you and your

> daughter,

> kay

> massachusetts

>

> Kay-

The only thing that we both feel good about this whole thing is that

now when people call he " lazy " or tell her she id " faking " she can tell

them what is really wrong. She missed the whole 3 rd quarter of school

this year and only went part time for the 4th. Did pass her grade tho

so is starting high school this fall but the abuse she took during that

time was unbelievable. And of course the docs just kept saying it was

hormones or migraines and that it would resolve when she got older.

Luckily I thought to ask my LLD and he agreed to see her and tested

her.

She is in denial now saying that maybe they got her blood mixed up or

that it is false positive(could be a doc with that comment LOL).

We are both just waiting until next Fri to see the LLD and then will

handle things as they happen.

L(MI)

>

>

> ---------------------------