what to expect?

[Guest guest]

All I know is that my husband is very tired all the time and his job involves

a lot of driving to and from his job destinations. By the time he gets to

the site he is exhausted. I think you should ask your DR. what he/she thinks?

It is hard not being able to do what you are use to doing but maybe you can

do it only a few days a week instead of 5 days a week. That's my input hope

it helped. Irish

[Guest guest]

Sure sounds like your kinda caught. Going into treatment may require you to

decide what is more important. Now if you're thinking of combo therapy one

of the normal side effects is increasing fatigue. From the sounds of it you

are already pushing yourself to accomplish what you already are involved

with.

Don't create a fear about what may happen just try it and see. If fatigue

comes as a result of treatment then make the decision about continuing

treatment and/or your work. There are many therapies that are developing and

also as noted on this site alternative treatments and supplements.

what to expect?

Hi List!

I`m having a delima! I really need to work, but in order to make decent $$,

I

need to commute, which involves a drive, in rush hour traffic, of 1½ -2

hours........this in addition to working the 6 or 7 hours...plus the same

drive back home, in WORSE traffic.

I did this, as recently as last January..but now, I`m afraid, I won`t be

able

to find the energy to do this......my question is this: will I get used to

the work?? and adjust? Or will it ceontinue being a struggle??

This is so hard....I am young enough to work.......and when I go to town, IO

earn very good money.....and at the same time, I`m frightened that my

fatigue

will interfere with my performance.

Any feedback is appreciated.

Love and safety to us all,

debmc

------------------------------------------------------------------------

eGroups eLerts

It's Easy. It's Fun. Best of All, it's Free!

1/3079/6/_/96144/_/955543899/

------------------------------------------------------------------------

[Guest guest]

debmc: I don't want to alarm you, but that sounds like a formidable schedule

for even a healthy person. My husband, who will be 50 next month, has not

worked in two years because of the Hep-related fatigue and back pain worsened

from being in bed so much. But then, his work was physical. Any chance in

moving closer to your job? Good luck, Tree

[Guest guest]

You sure don't ask easy questions, now do you? As

everyone reacts differently, I can only tell you Pat's

expereince. He, too, is exhausted but he is still

working way too many hours each day. Most days he

works at least 12 hours, somedays more. Somedays he

can only work 6-8 hours and then he must sleep.

You are definitely biting off a lot, but then we all

do what we have to do to survive. Work is what is

keeping Pat going. I can't tell you that you will

adjust to the long hours, but I can suggest that you

try it. You will know what you can and can't handle.

Good Luck to you!!

Jeanie

--- dmcdol@... wrote:

> Hi List!

> I`m having a delima! I really need to work, but in

> order to make decent $$, I

> need to commute, which involves a drive, in rush

> hour traffic, of 1½ -2

> hours........this in addition to working the 6 or 7

> hours...plus the same

> drive back home, in WORSE traffic.

> I did this, as recently as last January..but now,

> I`m afraid, I won`t be able

> to find the energy to do this......my question is

> this: will I get used to

> the work?? and adjust? Or will it ceontinue being a

> struggle??

> This is so hard....I am young enough to

> work.......and when I go to town, IO

> earn very good money.....and at the same time, I`m

> frightened that my fatigue

> will interfere with my performance.

> Any feedback is appreciated.

> Love and safety to us all,

> debmc

>

>

------------------------------------------------------------------------

> eGroups eLerts

> It's Easy. It's Fun. Best of All, it's Free!

>

1/3079/6/_/96144/_/955543899/

>

------------------------------------------------------------------------

>

>

>

__________________________________________________

[Guest guest]

Kathy,

I have been just a lurker , learning from all of you. But I had to respond to your letter about your mother. I had a hip replacement in l997 and I still garden. Gardening is also my passion. You can get a bench with a cushion with handles, so you can get on your knees to work and then push yourself up with the handles. It works well for me and I am sure it will work for your mother. Talking about this makes me wish spring would hurry and get here so I can get in my flower garden and work.

J Gaskin in Alabama

My mom who is 83 will be haviing hip replacement surgery this Monday. At this point in time she is in extreme pain and has totally withdrawn within herself. Things were going ok until the doctor told her last Friday that she could never get now on her knees again and therefor she could not garden ever again. At this point in time her face went ashen and it was like the life went out of her. Gardening has been her passion for over 50 years. I would like to know from people who have had this surgery if this is in deed a true statement or is this doctor just painting the worst possiible picture for her. I have seen people who have had replacement surgery and they seem to have good movement. Does anyone have any comments. Thank youKathy

[Guest guest]

I understand that people with TKRs aren't supposed to crawl around on

their knees. But I have not encountered any advice that those with

THR should not kneel, ever. I have both hips replaced at age 59. I

find it easier to kneel using a kneeling bench, available by catalog

or at home & garden stores. The one I use is Rubbermaid. The best

part of using the bench is that it is padded and easier on the knees

and it gives one something to brace on to get up. I even used mine

indoors on occasion and it permitted me to do some things that I

might not have been able to do.

It doesn't seem out of line for her to ask her doctor exactly why she

won't be able to garden, what movements or positions would not be

recommended.

Also, remember that adaptation can permit the gardening to continue.

A local garden show this week has a session on gardening for the

physically challenged. I'll bet they talk about raised beds,

kneeling benches, and garden tools that are easier to use, etc.

[Guest guest]

Kneeling-- On the Floor:

I'm 64, overweight, and 10 weeks past left THR, anterior approach. I

started doing exercises on the floor about 2 weeks ago without difficulty.

My doc says movement unrestricted. Pretty stiff with the bending involved,

but then I was before the surgery and the acute left hip problem. I'm

working on toe touches for bending. Have long done squat exercises for

getting up-- very helpful.

My PT says dislocation danger is in moves that rotate the joint, not in

forward bends. So I'm avoiding/going easy on rotation.

[Guest guest]

FIND ANOTHER GI DOCTOR AND GET A COLONOSCOPY.

From: bunny.nathan <bunny.nathan@...>Subject: [low dose naltrexone] What to expect?low dose naltrexone Date: Friday, October 23, 2009, 8:51 PM

I don't even know what my diagnoses is?I have been ill for monthes, went from 159 down to 118, loose stools/can't handle solid foods/constant stomach pain/ blood work says anemia/malnurished, body not retaining protiens/nurishment s?/upper G.I=nothing? lower (colonoscopy) has been put off for "another" month!So, friend says 'LDN'?

[Guest guest]

Hi everyone. I know that experience with meds vary, but thought I would ask for

some sharing. My child is going to start on tindamax 2 days a week. What has

this med been like for others? Thanks in advance for any sharing.

[Guest guest]

Not to scare you, this is only our experience.

My son had a very hard time on it, shakes, nausea etc... was only able to take

it on the w/ends because it stayed in his system and made him too sick to go to

school. We eventually stopped it.

Good Luck. I hope you have a better experience.

Peace

From: speckofpepper <sandsure@...>

Subject: [ ] what to expect?

Date: Tuesday, October 5, 2010, 7:37 PM

 

Hi everyone. I know that experience with meds vary, but thought I would

ask for some sharing. My child is going to start on tindamax 2 days a week.

What has this med been like for others? Thanks in advance for any sharing.

[Guest guest]

My 10yo daughter started Tindamax but unfortunately she was put on it for a week

at first and after 3 days she herx'd so bad it was barely tolerable. Her dr.

switched her to just weekends which so far has been fine. She cannot swallow

pills yet and the only way we've found that she can take it is to crush it and

mix it with a teaspoon of chocolate ice cream. Best wishes you to you and your

family.

* ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

(¸.•´ (¸ ;. •´ Tricia

God is faithful always and in all ways!

www.ReviveOurHearts.org

www.knowGOD.org

________________________________

From: speckofpepper <sandsure@...>

Sent: Tue, October 5, 2010 7:37:43 PM

Subject: [ ] what to expect?

Hi everyone. I know that experience with meds vary, but thought I would ask for

some sharing. My child is going to start on tindamax 2 days a week. What has

this med been like for others? Thanks in advance for any sharing.

[Guest guest]

My daughter is adult sized, but she has been taking and handling Tindamax ok for

a while now. Om the other hand, she is herxing more than her sister so perhaps

that's why. Thanks for the feedback -- I'll talk to the doc about it.

Natasha

________________________________

From: Tricia Soderstrom <TriciaSod@...>

Sent: Wed, October 6, 2010 4:43:03 AM

Subject: Re: [ ] what to expect?

My 10yo daughter started Tindamax but unfortunately she was put on it for a week

at first and after 3 days she herx'd so bad it was barely tolerable. Her dr.

switched her to just weekends which so far has been fine. She cannot swallow

pills yet and the only way we've found that she can take it is to crush it and

mix it with a teaspoon of chocolate ice cream. Best wishes you to you and your

family.

* ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

(¸.•´ (¸ ;. •´ Tricia

God is faithful always and in all ways!

www.ReviveOurHearts.org

www.knowGOD.org

________________________________

From: speckofpepper <sandsure@...>

Sent: Tue, October 5, 2010 7:37:43 PM

Subject: [ ] what to expect?

Hi everyone. I know that experience with meds vary, but thought I would ask for

some sharing. My child is going to start on tindamax 2 days a week. What has

this med been like for others? Thanks in advance for any sharing.

[Guest guest]

My 15 year old son has been on Tindamax Saturday and Sunday for 2 months. It is

hard to tell how it effects him as he is very sick most days. Something is

giving him fevers but I can't tell which antibiotic or artemesia is doing it.

I, too, have been on Tindamax and take starting Friday after work. It seems that

Tuesdays are the hardest for me with fatigue and some nausea. I don't have many

Lyme symptoms to start with so I can easily tell changes.

How old is your son and what else is he on?

Kari

[Guest guest]

My daughter is also adult sized. She takes Tindamax 2 days/week. At

first it was very tough for her, especially the day after the two days

she took it. Over time, it has improved and she's just a little tired

on the day after.

On 10/6/2010 9:40 AM, Natasha Moiseyev wrote:

>

> My daughter is adult sized, but she has been taking and handling

> Tindamax ok for

> a while now. Om the other hand, she is herxing more than her sister so

> perhaps

> that's why. Thanks for the feedback -- I'll talk to the doc about it.

>

> Natasha

>

> ________________________________

> From: Tricia Soderstrom <TriciaSod@...

> <mailto:TriciaSod%40verizon.net>>

>

> <mailto: %40>

> Sent: Wed, October 6, 2010 4:43:03 AM

> Subject: Re: [ ] what to expect?

>

> My 10yo daughter started Tindamax but unfortunately she was put on it

> for a week

>

> at first and after 3 days she herx'd so bad it was barely tolerable.

> Her dr.

> switched her to just weekends which so far has been fine. She cannot

> swallow

> pills yet and the only way we've found that she can take it is to

> crush it and

> mix it with a teaspoon of chocolate ice cream. Best wishes you to you

> and your

> family.

>

> * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> (¸.•´ (¸ ;. •´ Tricia

>

> God is faithful always and in all ways!

>

> www.ReviveOurHearts.org

> www.knowGOD.org

>

> ________________________________

> From: speckofpepper <sandsure@... <mailto:sandsure%40bestmail.us>>

>

> <mailto: %40>

> Sent: Tue, October 5, 2010 7:37:43 PM

> Subject: [ ] what to expect?

>

> Hi everyone. I know that experience with meds vary, but thought I

> would ask for

>

> some sharing. My child is going to start on tindamax 2 days a week.

> What has

> this med been like for others? Thanks in advance for any sharing.

>

>

[Guest guest]

I believe Tindamax is a hard hitter but that isn't necessarily a bad thing in

the world of Lyme. My son (congenital Lyme) took it after about 1 yr of

treatment then got a secondary bulls-eye rash. I also took it and herxed but

nothing worse than that.

Best wishes,

Elaine

________________________________

From: speckofpepper <sandsure@...>

Sent: Tue, October 5, 2010 4:37:43 PM

Subject: [ ] what to expect?

Hi everyone. I know that experience with meds vary, but thought I would ask for

some sharing. My child is going to start on tindamax 2 days a week. What has

this med been like for others? Thanks in advance for any sharing.

[Guest guest]

Thank you so much to everyone for sharing your experiences with this med. My

child is 14, congenital, breastmilk exposed and reinfected as a toddler and

again about 3 years ago. Never treated appropriately with meds until a year

ago. She is doing so much better, but is basically has to save all her energy

and hope really hard that she can make it out of the house twice a week for

classes. It seems like choosing days where she has time to " recover " from the

meds before her scheduled out of the house days will be in order. I know and

she knows that she will feel worse before she feels better...but it is so hard,

right? It has been a long 3 years for her and to know that this phase of

treatment may be difficult is scary. Thank you all so much as the support is

so important to me. Thinking of all the children and the parents that hold them

up and keep them on course, even when they are often not well themselves.

[Guest guest]

My son has been on it every saturday and sunday since July and he's been

perfectly fine. Kind of worries me a bit that he has no adverse reactions. He

also takes cipro and azithro twice daily every day.

From: speckofpepper <sandsure@...>

Subject: [ ] what to expect?

Date: Tuesday, October 5, 2010, 7:37 PM

Hi everyone.  I know that experience with meds vary, but thought I would ask for

some sharing.  My child is going to start on tindamax 2 days a week.  What has

this med been like for others?  Thanks in advance for any sharing. 

------------------------------------

Lyme Disease News continually updated from thousands of sources around the

net: http://www.topix.net/health/lyme-disease

MedWorm: The latest items on: Lyme Disease

http://tinyurl.com/23dgy8

[Guest guest]

My children, who are supposedly mostly well after 13 months of treatment

including a PICC line, are both lying in bed in pain again today after 3 days in

school. I gnash my teeth but it is what it is. Oh, and the district nurse just

stormed our LLMD's office unannounced to explain to him how to treat lyme

patients and that a few weeks of antibiotics and his malingering patients should

be back in school. I wish that were true, and I wish she had late-stage Lyme

and had people telling her to get her behind in to work and stop malingering.

The world is not a fair place.

I'm trying to get my daughters to start a facebook page for teen Lymies to meet

and chat about life, the universe, Lyme and everything. But more than just

Lyme. Let me know if any of your children start one.

Natasha

________________________________

From: speckofpepper <sandsure@...>

Sent: Thu, October 7, 2010 5:41:47 AM

Subject: [ ] Re: what to expect?

Thank you so much to everyone for sharing your experiences with this med. My

child is 14, congenital, breastmilk exposed and reinfected as a toddler and

again about 3 years ago. Never treated appropriately with meds until a year

ago. She is doing so much better, but is basically has to save all her energy

and hope really hard that she can make it out of the house twice a week for

classes. It seems like choosing days where she has time to " recover " from the

meds before her scheduled out of the house days will be in order. I know and

she knows that she will feel worse before she feels better...but it is so hard,

right? It has been a long 3 years for her and to know that this phase of

treatment may be difficult is scary. Thank you all so much as the support is

so important to me. Thinking of all the children and the parents that hold them

up and keep them on course, even when they are often not well themselves.

[Guest guest]

Natasha........I am so sorry!!  After almost two weeks of school my daughter

now

has been down for about a month.......I am so sad to hear what the school nurse

did........I cant help but hate that this world is so misunderstood about

lyme......my in-laws think I just do not want my daughter to go to school or

even worse.....I am making her sick?  HOw terrible for us to have to go though

this.....and how terrible for the kids............the ones bed bound and the

stress that puts on them from other that have no " clue " about this

disease............my prayers to you..........it feels like we are up against a

huge wall.......Bless you!!

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Thu, October 7, 2010 12:44:01 PM

Subject: Re: [ ] Re: what to expect?

 

My children, who are supposedly mostly well after 13 months of treatment

including a PICC line, are both lying in bed in pain again today after 3 days in

school. I gnash my teeth but it is what it is. Oh, and the district nurse just

stormed our LLMD's office unannounced to explain to him how to treat lyme

patients and that a few weeks of antibiotics and his malingering patients should

be back in school. I wish that were true, and I wish she had late-stage Lyme

and had people telling her to get her behind in to work and stop malingering.

The world is not a fair place.

I'm trying to get my daughters to start a facebook page for teen Lymies to meet

and chat about life, the universe, Lyme and everything. But more than just

Lyme. Let me know if any of your children start one.

Natasha

________________________________

From: speckofpepper <sandsure@...>

Sent: Thu, October 7, 2010 5:41:47 AM

Subject: [ ] Re: what to expect?

Thank you so much to everyone for sharing your experiences with this med. My

child is 14, congenital, breastmilk exposed and reinfected as a toddler and

again about 3 years ago. Never treated appropriately with meds until a year

ago. She is doing so much better, but is basically has to save all her energy

and hope really hard that she can make it out of the house twice a week for

classes. It seems like choosing days where she has time to " recover " from the

meds before her scheduled out of the house days will be in order. I know and

she knows that she will feel worse before she feels better...but it is so hard,

right? It has been a long 3 years for her and to know that this phase of

treatment may be difficult is scary. Thank you all so much as the support is

so important to me. Thinking of all the children and the parents that hold them

up and keep them on course, even when they are often not well themselves.

[Guest guest]

Natasha,

My heart goes out to you as you struggle in getting your girls well. My

daughter spent 10th through 12th grade ill and undiagnosed. We parents feel

guilty, but we try our best. So many of us have heard, " How did they finally

figure out she had Lyme disease? " And we have to reply, " There was no 'THEY' " .

Years of searching finally led me to getting a chiropractor to order the Western

Blot. This was two years after a negative ELISA. No specialist or PCP ever

figured anything out. Did this happen to you, too?

Please check with your daughters' school and see if they can get on a 504

disability plan. All you need is a note from your doctor and they HAVE to

provide accommodations for your children. Talk to the guidance counselor about

this. It was too late for my daughter....she graduated from high school just a

few months after being diagnose in March 2010. Now she is in college with

accommodations. She's had her ups and downs so far this year, but the

college's disability office is extremely helpful. If you can get a 504, perhaps

the district nurse will get down from her high horse and let your daughters

learn when they are feeling well.

My daughter likes to go on LYMEFRIENDS. They have to accept you and it is a

relatively small group so it's not too crazy. Within the site there are many

groups. I joined and am on the parents' group. Perhaps your girls would like

to check it out. There are places to chat, post pictures, etc. It seems to be

more personal than Facebook.

Much love, support, and healing thoughts to you and your family.

[Guest guest]

Thanks Diane --

Actually she told us last year on the record in our 504 conference that our LLMD

had said a couple of days of herxing was all they would have to deal with when

they started treatment. I told her I was quite sure she had misunderstood as he

had told us (and said in a letter) that our daughter would miss the whole first

semester of school. Sheesh.

This new round came to a friend of ours who has late stage & co and her daughter

probably has congenital and co, but is in any event CDC positive. Nurse arrived

at the house unannounced and after asking what was wrong with them anyway (this

to mom with port and tube hanging out of her chest) and informed her that in her

entire experience she had NEVER seen a child with Lyme who needed to stay home

and was not fine after a few weeks of antibiotics. Guess she forgot about us,

haha. Then she demanded that my friend sign a waiver so the nurse could talk to

the LLMD, and thence stormed his office. He's a strong guy -- as he has to be

to even be a LLMD -- and had choice words delivered at top volume to Nurse

Ratchett.

But the good news is that this last antic may be enough to get her kicked out of

the district. Fingers crossed. It's not just Lymies -- she is not letting

parents with diabetic kids get insulin during the school day -- delivered by the

parents or by the school nurses. Wow. As if it's not hard enough having sick

kids, to have to deal with the naysayers and bullies. Well, what does not kill

us will make us stronger.

I so cherish this group. Thanks all. Have a great weekend and here's to a

better week next week.

Natasha

________________________________

From: Diane Biel <dkbmama@...>

Sent: Thu, October 7, 2010 11:09:47 AM

Subject: Re: [ ] Re: what to expect?

Natasha........I am so sorry!! After almost two weeks of school my daughter now

has been down for about a month.......I am so sad to hear what the school nurse

did........I cant help but hate that this world is so misunderstood about

lyme......my in-laws think I just do not want my daughter to go to school or

even worse.....I am making her sick? HOw terrible for us to have to go though

this.....and how terrible for the kids............the ones bed bound and the

stress that puts on them from other that have no " clue " about this

disease............my prayers to you..........it feels like we are up against a

huge wall.......Bless you!!

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Thu, October 7, 2010 12:44:01 PM

Subject: Re: [ ] Re: what to expect?

My children, who are supposedly mostly well after 13 months of treatment

including a PICC line, are both lying in bed in pain again today after 3 days in

school. I gnash my teeth but it is what it is. Oh, and the district nurse just

stormed our LLMD's office unannounced to explain to him how to treat lyme

patients and that a few weeks of antibiotics and his malingering patients should

be back in school. I wish that were true, and I wish she had late-stage Lyme

and had people telling her to get her behind in to work and stop malingering.

The world is not a fair place.

I'm trying to get my daughters to start a facebook page for teen Lymies to meet

and chat about life, the universe, Lyme and everything. But more than just

Lyme. Let me know if any of your children start one.

Natasha

________________________________

From: speckofpepper <sandsure@...>

Sent: Thu, October 7, 2010 5:41:47 AM

Subject: [ ] Re: what to expect?

Thank you so much to everyone for sharing your experiences with this med. My

child is 14, congenital, breastmilk exposed and reinfected as a toddler and

again about 3 years ago. Never treated appropriately with meds until a year

ago. She is doing so much better, but is basically has to save all her energy

and hope really hard that she can make it out of the house twice a week for

classes. It seems like choosing days where she has time to " recover " from the

meds before her scheduled out of the house days will be in order. I know and

she knows that she will feel worse before she feels better...but it is so hard,

right? It has been a long 3 years for her and to know that this phase of

treatment may be difficult is scary. Thank you all so much as the support is

so important to me. Thinking of all the children and the parents that hold them

up and keep them on course, even when they are often not well themselves.

[Guest guest]

Hi!

We actually DID have a LLMD. Here's how it went: Child 1 started getting

" growing pains " and inattentive ADD starting in Kindergarten (she already had

huge sensory sensitivities from birth). Child 2 had worsening ADHD from about 2

or 3 on, clumsiness, etc. Child 1 became profoundly ill a week after 8th

birthday with giant hives, strange bloodwork results, and rheumatic pain but no

swelling in all joints. Given steroids for 2 weeks. Initial improvement, then

worse. Sent to Pediatric RHeumatology, diagnosed with eosinophilic leukemia,

which has abysmal survival rates. Bloodwork came back normalizing just in time

to avoid a bone marrow biopsy, but there were no answers. She had " residual "

bone and joint pain thereafter, so had to give up dance,which was her big love.

Still had brain fog. No one offered answers, and all said it should fade in

time. I had by that time gotten savvy enough to figure out these were symptopms

of Lyme, we are a camping family, and that she could have been bitten by a tick

at her birthday party in the woods -- a " ranger " party. Ugh. test

negative. I demanded Western Blot, was told the results were negative. Never

saw results, didn't know enough to ask to see them. At age 10 mid-way through

october of fifth grade, got excruciating stomach pains, bone and joint and

muscle pain and migraines all came back. No answers. Grandma (who we are not

sure has Lyme) had been diagnosed with fibromyalgia and in the absence of any

clinical tests to explain the symptoms we finallly got a doctor to diagnose

fibro. We went to an integrative medicine specialist in pediatric fibromyalgia

who asked if she's been tested for Lyme. I said yes, and it was negative. No

one thought to ask for the actual records. After a year of treatment with fish

oil, turmeric, gabapentin, etc. for fibro, she had missed a lot of school and

had terrible CFS. I wanted an appointment in June and was told there were not

any available until November. Seriously? With a child in excruciating pain? So

I found a local CFS specialist who is also a LLMD. I took her to him with the

idea that if we could not control her fibro pain maybe we could get her more

energy. He said she had late stage lyme, he could see the bartonella " claw

marks " across her shoulders, and had her tested. Negative, but enough equivocal

and other clinical signs in bloodwork (like complete absence of magnesium, etc.)

that he diagnosed and began treating. Herx central. Meanwhile, little sister

had gone rom clumsy ADHD kid to fully Auditory processing disorder, bipolar and

violent, and started to have joint pain and fatigue and what the pediatrician

called " stretch marks " all over her entire legs and belly right after getting

bitten by a tick on her fifth grade end of the year camping trip. We hauled her

in for testing as well. Positive for everything -- Lyme, bartonella, babesia,

erlichia ... started treatment. LLMD said that the tick bite and reinfection was

the gift that got her congenital lyme treated. That was a year ago. Both missed

bunches of school, and I taught them because the district was super backwards in

getting us a tutor at all, then in getting us a competent one, so I just did it

myself. Grrrr. Now they are back in the district, and Child #2 is off all

psych meds!!!!! and doing great, her left side is no longer weak, her left foot

is no longer turned in, and she is even in PE most days. Every day she says is

better than the onebefore, she is making friends, and she is happy as a clam.

For her life really is just beginning. Her sister is struggling more. Both

are on 504 plans, and we are still getting arguments about whether they can

attend PE on days when they are in school, why should they be allowed to dictate

whether they are well enough to come for a part of all day or all day and no PE

and whatnot. We are waiting for doctor to write a letter so we can have the

meeting. I'm going to insist that Nurse Ratchett's supervisors be there for our

504 meeting because enough is enough.

But you know what? Things ARE much better than this time last year, when she

could not be out of her dark room and her skin hurt so much she could not bear

to be touched. Progress is so slow, but it is progress. I'm trying to hold onto

that and be glad for it, instead of mad about how far we still have to go.

Natasha

________________________________

From: batikquilt <batikquilt@...>

Sent: Thu, October 7, 2010 11:19:51 AM

Subject: [ ] Re: what to expect?

Natasha,

My heart goes out to you as you struggle in getting your girls well. My

daughter spent 10th through 12th grade ill and undiagnosed. We parents feel

guilty, but we try our best. So many of us have heard, " How did they finally

figure out she had Lyme disease? " And we have to reply, " There was no 'THEY' " .

Years of searching finally led me to getting a chiropractor to order the Western

Blot. This was two years after a negative ELISA. No specialist or PCP ever

figured anything out. Did this happen to you, too?

Please check with your daughters' school and see if they can get on a 504

disability plan. All you need is a note from your doctor and they HAVE to

provide accommodations for your children. Talk to the guidance counselor about

this. It was too late for my daughter....she graduated from high school just a

few months after being diagnose in March 2010. Now she is in college with

accommodations. She's had her ups and downs so far this year, but the

college's disability office is extremely helpful. If you can get a 504, perhaps

the district nurse will get down from her high horse and let your daughters

learn when they are feeling well.

My daughter likes to go on LYMEFRIENDS. They have to accept you and it is a

relatively small group so it's not too crazy. Within the site there are many

groups. I joined and am on the parents' group. Perhaps your girls would like

to check it out. There are places to chat, post pictures, etc. It seems to be

more personal than Facebook.

Much love, support, and healing thoughts to you and your family.

[Guest guest]

Natasha,

I am shocked and appalled at what the school nurse pulled!! We were

lucky to never have anyone get in our face outside of school. We had our

battles, but nothing like the one you are talking about. I do hope she

will soon be out of your district.

It just is unbelievable how much some people will take on as their

right. I am glad that your girls are under a good LLMD and that the

nurse will soon be history if she is not already.

Hugs,

Z

[Guest guest]

WOW, unbelievable. Can you and the others file formal complaints

about the nurse to the district?

Suzanne

On Oct 7, 2010, at 2:47 PM, Natasha Moiseyev wrote:

> Thanks Diane --

>

> Actually she told us last year on the record in our 504 conference

> that our LLMD

> had said a couple of days of herxing was all they would have to deal

> with when

> they started treatment. I told her I was quite sure she had

> misunderstood as he

> had told us (and said in a letter) that our daughter would miss the

> whole first

> semester of school. Sheesh.

>

> This new round came to a friend of ours who has late stage & co and

> her daughter

> probably has congenital and co, but is in any event CDC positive.

> Nurse arrived

> at the house unannounced and after asking what was wrong with them

> anyway (this

> to mom with port and tube hanging out of her chest) and informed her

> that in her

> entire experience she had NEVER seen a child with Lyme who needed to

> stay home

> and was not fine after a few weeks of antibiotics. Guess she forgot

> about us,

> haha. Then she demanded that my friend sign a waiver so the nurse

> could talk to

> the LLMD, and thence stormed his office. He's a strong guy -- as he

> has to be

> to even be a LLMD -- and had choice words delivered at top volume to

> Nurse

> Ratchett.

>

> But the good news is that this last antic may be enough to get her

> kicked out of

> the district. Fingers crossed. It's not just Lymies -- she is not

> letting

> parents with diabetic kids get insulin during the school day --

> delivered by the

> parents or by the school nurses. Wow. As if it's not hard enough

> having sick

> kids, to have to deal with the naysayers and bullies. Well, what

> does not kill

> us will make us stronger.

>

> I so cherish this group. Thanks all. Have a great weekend and here's

> to a

> better week next week.

>

> Natasha

>

> ________________________________

> From: Diane Biel <dkbmama@...>

>

> Sent: Thu, October 7, 2010 11:09:47 AM

> Subject: Re: [ ] Re: what to expect?

>

> Natasha........I am so sorry!! After almost two weeks of school my

> daughter now

>

> has been down for about a month.......I am so sad to hear what the

> school nurse

> did........I cant help but hate that this world is so misunderstood

> about

> lyme......my in-laws think I just do not want my daughter to go to

> school or

> even worse.....I am making her sick? HOw terrible for us to have to

> go though

> this.....and how terrible for the kids............the ones bed bound

> and the

> stress that puts on them from other that have no " clue " about this

> disease............my prayers to you..........it feels like we are

> up against a

> huge wall.......Bless you!!

>

> ________________________________

> From: Natasha Moiseyev <nmoiseyev@...>

>

> Sent: Thu, October 7, 2010 12:44:01 PM

> Subject: Re: [ ] Re: what to expect?

>

> My children, who are supposedly mostly well after 13 months of

> treatment

> including a PICC line, are both lying in bed in pain again today

> after 3 days in

>

> school. I gnash my teeth but it is what it is. Oh, and the district

> nurse just

> stormed our LLMD's office unannounced to explain to him how to treat

> lyme

> patients and that a few weeks of antibiotics and his malingering

> patients should

>

> be back in school. I wish that were true, and I wish she had late-

> stage Lyme

> and had people telling her to get her behind in to work and stop

> malingering.

> The world is not a fair place.

>

> I'm trying to get my daughters to start a facebook page for teen

> Lymies to meet

> and chat about life, the universe, Lyme and everything. But more

> than just

> Lyme. Let me know if any of your children start one.

>

> Natasha

>

> ________________________________

> From: speckofpepper <sandsure@...>

>

> Sent: Thu, October 7, 2010 5:41:47 AM

> Subject: [ ] Re: what to expect?

>

> Thank you so much to everyone for sharing your experiences with this

> med. My

> child is 14, congenital, breastmilk exposed and reinfected as a

> toddler and

> again about 3 years ago. Never treated appropriately with meds until

> a year

> ago. She is doing so much better, but is basically has to save all

> her energy

> and hope really hard that she can make it out of the house twice a

> week for

> classes. It seems like choosing days where she has time to " recover "

> from the

> meds before her scheduled out of the house days will be in order. I

> know and

> she knows that she will feel worse before she feels better...but it

> is so hard,

> right? It has been a long 3 years for her and to know that this

> phase of

> treatment may be difficult is scary. Thank you all so much as the

> support is

> so important to me. Thinking of all the children and the parents

> that hold them

> up and keep them on course, even when they are often not well

> themselves.

>

>

[Guest guest]

yes. I am encouraging the LLMD to do so, and have a list of the people who

should receive the letter. Seriously, it is amazing what people feel entitled

to do to parents and those who are trying to help them.

________________________________

From: Suzanne <suzlwilliams@...>

Sent: Thu, October 7, 2010 3:23:09 PM

Subject: Re: [ ] Re: what to expect?

WOW, unbelievable. Can you and the others file formal complaints

about the nurse to the district?

Suzanne

On Oct 7, 2010, at 2:47 PM, Natasha Moiseyev wrote:

> Thanks Diane --

>

> Actually she told us last year on the record in our 504 conference

> that our LLMD

> had said a couple of days of herxing was all they would have to deal

> with when

> they started treatment. I told her I was quite sure she had

> misunderstood as he

> had told us (and said in a letter) that our daughter would miss the

> whole first

> semester of school. Sheesh.

>

> This new round came to a friend of ours who has late stage & co and

> her daughter

> probably has congenital and co, but is in any event CDC positive.

> Nurse arrived

> at the house unannounced and after asking what was wrong with them

> anyway (this

> to mom with port and tube hanging out of her chest) and informed her

> that in her

> entire experience she had NEVER seen a child with Lyme who needed to

> stay home

> and was not fine after a few weeks of antibiotics. Guess she forgot

> about us,

> haha. Then she demanded that my friend sign a waiver so the nurse

> could talk to

> the LLMD, and thence stormed his office. He's a strong guy -- as he

> has to be

> to even be a LLMD -- and had choice words delivered at top volume to

> Nurse

> Ratchett.

>

> But the good news is that this last antic may be enough to get her

> kicked out of

> the district. Fingers crossed. It's not just Lymies -- she is not

> letting

> parents with diabetic kids get insulin during the school day --

> delivered by the

> parents or by the school nurses. Wow. As if it's not hard enough

> having sick

> kids, to have to deal with the naysayers and bullies. Well, what

> does not kill

> us will make us stronger.

>

> I so cherish this group. Thanks all. Have a great weekend and here's

> to a

> better week next week.

>

> Natasha

>

> ________________________________

> From: Diane Biel <dkbmama@...>

>

> Sent: Thu, October 7, 2010 11:09:47 AM

> Subject: Re: [ ] Re: what to expect?

>

> Natasha........I am so sorry!! After almost two weeks of school my

> daughter now

>

> has been down for about a month.......I am so sad to hear what the

> school nurse

> did........I cant help but hate that this world is so misunderstood

> about

> lyme......my in-laws think I just do not want my daughter to go to

> school or

> even worse.....I am making her sick? HOw terrible for us to have to

> go though

> this.....and how terrible for the kids............the ones bed bound

> and the

> stress that puts on them from other that have no " clue " about this

> disease............my prayers to you..........it feels like we are

> up against a

> huge wall.......Bless you!!

>

> ________________________________

> From: Natasha Moiseyev <nmoiseyev@...>

>

> Sent: Thu, October 7, 2010 12:44:01 PM

> Subject: Re: [ ] Re: what to expect?

>

> My children, who are supposedly mostly well after 13 months of

> treatment

> including a PICC line, are both lying in bed in pain again today

> after 3 days in

>

> school. I gnash my teeth but it is what it is. Oh, and the district

> nurse just

> stormed our LLMD's office unannounced to explain to him how to treat

> lyme

> patients and that a few weeks of antibiotics and his malingering

> patients should

>

> be back in school. I wish that were true, and I wish she had late-

> stage Lyme

> and had people telling her to get her behind in to work and stop

> malingering.

> The world is not a fair place.

>

> I'm trying to get my daughters to start a facebook page for teen

> Lymies to meet

> and chat about life, the universe, Lyme and everything. But more

> than just

> Lyme. Let me know if any of your children start one.

>

> Natasha

>

> ________________________________

> From: speckofpepper <sandsure@...>

>

> Sent: Thu, October 7, 2010 5:41:47 AM

> Subject: [ ] Re: what to expect?

>

> Thank you so much to everyone for sharing your experiences with this

> med. My

> child is 14, congenital, breastmilk exposed and reinfected as a

> toddler and

> again about 3 years ago. Never treated appropriately with meds until

> a year

> ago. She is doing so much better, but is basically has to save all

> her energy

> and hope really hard that she can make it out of the house twice a

> week for

> classes. It seems like choosing days where she has time to " recover "

> from the

> meds before her scheduled out of the house days will be in order. I

> know and

> she knows that she will feel worse before she feels better...but it

> is so hard,

> right? It has been a long 3 years for her and to know that this

> phase of

> treatment may be difficult is scary. Thank you all so much as the

> support is

> so important to me. Thinking of all the children and the parents

> that hold them

> up and keep them on course, even when they are often not well

> themselves.

>

>