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Dear ,

Thanks so much-- I really appreciate it and I am sure other moms who

are working in this process do too. My daughter has IgA deficiency and

suspected antibody deficiency so there will be probably some of the same issues

that

we are dealing with. In addition, my daughter has had 3 open heart surgeries 2

bouts of endocarditis and GERD, constipation and an undiagnosed vascular

condition. Since she has a mechanical aortic valve and requires blood thinning

medication--something so simple as a teacher throwing a soccer ball in the

classroom as a get to know you game makes her very anxious as she is aware that

she

needs to avoid impact to her chest as well as in general to avoid internal

bleeding. The communication barriers are enormous. We haven't been able to

" talk " to anyone in administration for the three days my daughter has tried to

attend school.

I am thinking of having my doctor write a note so that I can accompany

my daughter to school for a day and sit in on her classes with her to try and

facilitate communication. I was wondering if anyone had done that?

--Martha

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In a message dated 9/6/2003 12:26:45 PM Eastern Daylight Time,

Bejenski@... writes:

I'm sorry to make such a long letter, but I feel like I'm about to explode!

Thank you.

Lynne (mom to Sis: Igg def, subclasses low, severe asthma, reflux. :

severe asthma, reflux)

Lynne, my heart goes out to you. What does your IEP say? If it doesn't say

anything about the school providing for the rest of her teaching day it

certainly should. It is the school's job to teach your child, even if they are

only

there a half a day. It is up to the school to provide you with whatever

necessary to accomplish that, even if it means that the teacher comes to your

home

again. And they can't put her in a special education classroom without your

consent, your knowledge, and definitely not without an IEP on file stating that!

I

would certainly make an appointment with the principal to sit down and go over

all that is happening, list your complaints, and document them. I hear this

all the time, document, document, document. I would formally ask for a new IEP

to be made, and make sure that every single thing is listed in there! I'd also

request the superintendent be there at the meeting as well, and I'd consider

filing a formal complaint against that teacher. A teacher with that attitude

should not be teaching!!!! There are advocacy people out there that can give

you excellent advice with knowledge of your particular school district, and

contacting them for starting advice on how to handle this situation is a great

first step.

Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9

(she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

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Hi Lynn, I just read your post, that is ridiculous that you are having to go

through all this.( Sis too). Do you mind my asking what state you live in? It

comes to my mind there is a law? an Act? about No Child being left behind. I

also believe you need an IEP( Individual Education Plan ) for Sis. We have a 504

plan for for some accommodations in the school, the IEP is the bigger

gun. I just had our lawyer( my mom) rewrite her 504, she said it was too vague,

it will be interesting what the school says( I don't think they can really say

anything). I'm going through my conference stuff now to try and see what was

said about school issues, if I find anything I'll get back to you. If you want I

can ask my Mom( the lawyer, she does institutional law) if she has any

suggestions. I hope things settle down for you all.

MOM to

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Hi Martha,

I have left a message with my Mom, I'll find out what I can, I'm sure she'll

help, she went to the conference with us and finally now knows what we are all

up against. I'll write back as soon as I hear.

Mom to

Re: re: Sis

Hi ,

We are also trying to develop a 504 plan for who is now out of

school because she is having allergic symptoms to something in the school at

this time. Does your mom know of any resource books that we could use (or

that

she used) to develop a plan. All the information seems to be on IEP's and

that is what I am now reading, but I know that the 504 is a civil rights law

and

may need to be worded differently? We have an ed consultant but she is not

used to handling 504s. She has mainly dealt with IEP's

--Martha

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from Dale, Mom to Katy, CVID, age 19

Sorry, I've never dealt with this because we homeschooled. So, all I

can offer is my heartfelt sympathy to all of you struggling with this.

Lynne, I'm so sorry. Schools shouldn't be this way -- but many are.

I've listed some " Help " sites that may help, I don't know.

National Information Center for Handicapped Children and Youth

(www.nichcy.org)

Telephone (800)695-0285

This organization is a national information and referral cneter that

provides information on disabilities and disability-related issues for

family, educators, and other professionals. Specific information on

early intervention programs, special education, individualized education

programs, education rights and transition to adult life can be found

through this organization.

Family Voices: www.familyvoices.org

Telephone: 505-867-2368

A national organization that provides information and education

concerning the health care of children with special health needs.

Patient Advocate Foundation: www.patientadvocate.org

Telephone: 800-532-5274

A national non-profit organization that serves as an active liaison

between the patient and their insurer, employer, and/or creditors to

resolve insurance, job discrimination and/or debt crisis matters

relative to their diagnosis through case managers, doctors and attorneys.

slaw: www.wrightslaw.com

This web site is dedicated to helping individuals advocate for children

with disabilities with regard to the education system and legal issues.

Hope that helps,

In His service,

Dale

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Martha, I just received the 504 from my Mom, if anyone is interested I can type

it in so they can see it. I don't mind. has Selective IgA deficiency so

it may be different than what some of you may need but you can get some ideas,

any specific questions just ask and I'll pass it on to Mom. Just let me know,

I'll be on ans off today, we are actually home for a change.

Original Message -----

From: K979@...

Sent: Saturday, September 06, 2003 4:06 PM

Subject: Re: re: Sis

Dear ,

Thanks so much. I was even wondering if a bunch of us should

collaborate and try to write a sample PID 504 plan for the PID website once we

are

done. I noticed that the diabetes organization have a sample 504 plan that

can be

tailored to an individual's needs which they have posted on their website.

--Martha

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:

I'd love to see your 504 plan. I'm already nervous about this aspect of

school and doesn't start K until NEXT fall!!! Thanks --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

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In a message dated 9/6/2003 3:51:58 PM Central Standard Time,

SNAKpackmomma@... writes:

> I

> would certainly make an appointment with the principal to sit down and go

> over

> all that is happening, list your complaints, and document them. I hear this

> all the time, document, document, document. I would formally ask for a new

> IEP

> to be made, and make sure that every single thing is listed in there! I'd

> also

> request the superintendent be there at the meeting as well, and I'd consider

> filing a formal complaint against that teacher.

Oh, I agree. And make sure you're very calm and rational and professional,

don't let them think you're a hysterical mother. Treat it like a business

meeting, don't get too emotional or they won't take you as seriously. Good luck!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

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Dear Lynn,

I am so sorry you have had to go thru this. What is an ARD? Are you in a

private school?

We just finished s 504 plan. All 6 of s teachers were present along

with the school nurse and his school counselor. We had material from IDF,

showed a very brief video of s treatment, and stated s issues.

also has similar issues. is 13.........

He needs to use the bathroom without asking...........if he waits to ask it will

be to late. It states in his 504 that he can leave the classroom without

question to use the bathroom. He does not need to ask.

He can not drink out of water faucets. He has a bottle of water in every

classroom. The nurses office also has a supply for him.

There are days as you explained that is exhausted and as soon as school is

out he falls asleep in the car and sleeps for the rest of the

day.........Homework is excused on those days.

He frequently has to lay his head down on his desk.......no problem.

monitors his pain, when it gets to the point where he can not handle it he

can call me.......no questions asked........he is not to wait in the nurses

office to see if it gets better.

If there is a major test and is struggling with fatigue .......he will try

the test but may not be able to complete it or may bomb it........he can retake

when feeling well.

I will give the week that will need his infusion and the teachers will let

me know if there is something important on that day and I will try to schedule

on another day.

We also have a young lady who has CF and has a bacteria that is harmful to .

Thankfully they are in different grades and only share three teachers.......not

at the same time. So when enters and exits those rooms he MUST wash/Purell

his hands. There is a bottle of Purell in each class.

He also can not use the school computers without washing his hands. because of

this bacteria. They were going to give us a lap top :) but has one.

Don't panic about this bacteria...........its only in 5 % of CF patients and

only harmful if they are in the same room.............thus they will never be in

the nurses office together.

wants to be as normal as possible and to be honest with you most people who

don't really know would have no idea!!!

As for your school, as a parent with a child with medical issues you have

rights. Have you ever had a meeting with the teacher and principal.sound like

you are in elementary. I would have a meeting ASAP and make sure they fully

understand her needs.........backed up by a doctors letter stating the need for

bathroom........

It could be the teacher has no idea. If after meeting with them and no changes

have been made then I would look into your rights............Im not sure how it

applies to private schools.

we have not needed an IEP as our school district has been wonderful meeting our

request. And thus far has not abused his " privileges "

Well, hopefully the teacher just doest't understand, I would push for a meeting

ASAP and also considering keeping my child out until the meeting happens, thus

the child will not feel the pressure of a teacher not

understanding.............if you don't see a 100% change I would demand a new

teacher! Also if the school knows you are not returning until the meeting They

will schedule it ASAP! Be careful how you come across. You don't want to

threaten at this stage of the game but you can make it clear that you are

concerned about what has taken place thus far and the effect it is having on

your child...Then if you are not satisfied get a patients advocate to help.

Take some deep breaths and try to relax this weekend,

le

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As an FYI, I called IDF this week because Charlie started preschool back up

after his summer session, and they wanted to go over everything with his health

with his new teacher, who is WONDERFUL by the way, anyway, I wanted to get

some idea from IDF about what I should be telling them. The woman I spoke with

at IDF said they are in the process of putting together a letter for schools!

Dayna

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Hi Lynn,

here, I just spoke with my Mom. State and Federal Law has an act, The No

Child Left Behind Act. By not accommodating Sis, the teacher and the school are

breaking federal law( and as it is you are not asking for much). She said do not

go to the teacher but to the Principal, and request a meeting this week with

Principal and the Special Ed dept. and talk over what Sis needs( hopefully as an

IEP) you need to get everything in writing, if they don't make your meeting you

should go to the Superintendent of Schools and Commissioner of Education for

your state. She believes Sis should be taken out of this teachers class,

something you can request and given to a teacher who can handle children( she

said it's ridiculous that a teacher cannot handle 22 kids). If you get nowhere

tell them you want an impartial hearing, have everything in writing you need, if

you get just one thing on your list( be it drinking from her water bottle ,

going to the bathroom as needed, a copy of the lesson plans etc( and you will

win) the school district has to pay all lawyer fees. She says use the legal

aspect as a last resort but let them know you will go through legal channels if

necessary.

I have to say every time I think of what you are going through I get so mad.

I hope this may help. Please let me know if there are any other questions.

I am going to put 's 504 on next for those who want to read it.

Mom to

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thank you for replying.

This morning when I took Sis in, her teacher had the lesson plan with her,

only half of it again. I told her I needed the stuff she does to keep Sis on

task for she's not at school. She told me there is not any reason that I

should have the rest of the lesson plan, since I'm not teahcing that at home. I

told her I wanted her Math, Reading book sent back home with her in the pm

because we still had work not finished from last week. When I picked Sis up, I

checked her backpack, books not in there. I told Sis to go right back to her

classroom and get her math and reading. She came running down the hall in

tears and said the teacher told her " there is no reason your mom should have

these

books, you are not taking them " . I was standing there talking to a intern

principal, I told her that is what I'm up against. Then the teacher came around

the corner with the two books. She told me there was not one reason I should

have those books. I told her we had unfinished work at home. She said the

rest of the class was not caught up on the week;s schedule, that Sis was ahead

of the class now, since we had finished part of the work. She said it

confuses Sis, and makes the rest of the class upset for us to be ahead. I

informed

her Sis wouldn't be there tommorow also, maybe not the rest of the week if the

doc wants more tests done. She rolled her eyes and huffed at me. Oh! And let

me back up, this morning I told her that she has GOT to tell me if Sis can't

see straight, or gets dizzy, complains of her head hurting, that since her

pressure in her brain is going up again, her skull could crack. She and the

secretary there both rolled their eyes and said " whatever, she looks fine to

us " .

So I left, barely made it to my car before I was bawling like a baby. I

called my husband he couldn't understand me. I had also requested her not go

outside, it was a level red today. They gave me the whatever with that too. I

told my husband I should go back in there and get her, that I was terrified of

them not saying anything, then her dying, because of them being petty. So, I

guess I'm just going to buy a math book from the book company. And the reading

also. I don't know what else to do. I'm literally pulling my hair out.

Well, not pulling it out, but it's falling out all over the place. I'm

completely grey. I was coloring it, but when it started falling out I quit. I

finally

went to a salon, they said it wasn't the coloring, it was nerves, stress.

But it's coming out in handfulls. I have to clean the drain a few times when

taking a shower. I'm not even 40 yet, pushing it, but not there yet.

okay, she's not going ot sleep, and it's way past her bedtime. The phone

just rang again with another creditor. The bills are heaping, we're late on

everything. Barely making the major bills. Any advise on how to pay bills

without money?

Thank you to you all for listening ot me rattle.

Lynne

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Hi Lynne,

I just saw your post, amazing. I also read the post from Dayna. I agree. go

right to the Superintendent of Schools and the School board. Don't let them get

away with this. I realize how stressful this must be but they have to be

stopped. They are breaking all kinds of federal laws by not accommodating Sis,

as well as their ethical and moral views are screwed up. This teacher must be

reprimanded. That is something else Mom had said, if the teacher continues write

everything down and go complain at a school board meeting and demand to have her

reprimanded.( Personally, she needs to be fired for her attitude). What kind of

plan do you have through the school system? Is Texas that different from NY, we

have 504 plans and IEP. Her plan should cover everything, her drinking her water

as needed, bathroom privileges as needed, an extra set of books for home, full

daily lesson plans to be sent home, also what the teacher and staff should look

for in signs of trouble, etc. There is nothing that is over the top. The special

Ed dept( the woman is a jerk) at our school told me yesterday that she has kids

whose plans are 5 pages long and they have to be accommodated, the school

doesn't have a choice. I have a name and number for you, Mr. Eugene Lenz,

512-463-9414, fax 512-463-9434 e-mail- glenz@... . This is your

state director of Special Education for Texas. This website is for the National

Association of State Directors of Special Education- nasdse.org . this site may

also be helpful. I would use every gun in my arsenal at this point to stop the

injustice you are receiving. Mr. Lenz is the top guy and should be able to help

you. Please let me know how things go. Get Sis out of that teachers class

immediately, no child should go through this, no parent either.

As a side, when I went to give 's new 504 plan to the head of the

Special Ed dept, I walked in the office, no secretary around, I stood there for

several minutes, the door to her office was open, she heard the door open and

close but wouldn't acknowledge who came in the door, so after several minutes I

went to her office and politely knocked, " May I give you this update to

's 504 Plan? " she looked at me and said " What would you do if I said no,

would you walk out and leave? " I just looked at her, " No, not until you take it

and look it over " I said. So she did take it, and look it over and again didn't

want to supply a tutor on an as needed basis for . I told her you don't

have a choice this year, if she has a tough time with absences and fatigue you

will help her, failing is not an option. They are now moving her meeting up to

some time in September, hopefully in the next week or two, we'll see how it

goes.

Our prayers are with you all, if you need anything let me know.

mom to IgA def, asthma, gerd.

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Hi Lin,

I think it's time for you to call a meeting with the Principal, the

teacher, the school nurse and possibly the school counselor. Have your Doc's

write

letters to take with you. Everyone needs to be on the same page--which means

what is best for Sis. You shouldn't have to go through this.

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

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Sandi:

Thank you for replying. Today we had the appt. with the doc, he said to

pull her out of school, he's going to sign a homebound form. He said with her

pressure in her brain up, she doesn't need the added pressure from the

school. He's ordering a MRI, with a scan of her spine also. He's going to get

a

second opionion from another neurologist. He was furious that the other neuro

wasn't taking anything seriously. So I feel a lot better that now things are

rolling.

Thank you.

Lynne

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Hi Lynne,

My daughter has lots of bony growth on her knuckles in both hands. We saw

a rhematologist to find out the cause and he mentioned that it may be the

result of a vascular condition of some sort. So these things can be caused for

a

number of reasons. Probably would be a good idea to get this checked out.

Martha (mom to IgA deficiency etc.)

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  • 3 weeks later...

In a message dated 10/2/2003 11:45:36 PM Eastern Daylight Time,

Bejenski@... writes:

Please pray for us to have the knowledge and wisdom we need to make the

right decisions here, to do the Lord's will, not our own.

Thanks for listening

Lynne, I am so sorry. And definitely praying hard. It is unbelievable and

unacceptable for that teacher to talk that way to you. I still say you should

call the district superintendent and complain LOUDLY. I will pray that you get

answers at the appointment. No answers sucks. Praying hard!!!

Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9

(she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

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In a message dated 10/2/2003 11:45:36 PM Eastern Daylight Time,

Bejenski@... writes:

Please pray for us to have the knowledge and wisdom we need to make the

right decisions here, to do the Lord's will, not our own.

Thanks for listening

Lynne, I am so sorry. And definitely praying hard. It is unbelievable and

unacceptable for that teacher to talk that way to you. I still say you should

call the district superintendent and complain LOUDLY. I will pray that you get

answers at the appointment. No answers sucks. Praying hard!!!

Diane, Mom to Kody, age 7, precious and precocious who has Di Syndrome,

Hypogammaglobulinemia, epilepsy, asthma, chronic encopresis, and severe

cognitive regression. Also Mom to Arika age 16, Kaila, age 12, and Sami age 9

(she

happens to also be Dyslexic), and wife/soulmate to for 10 years.

check out my website: www.geocities.com/schmidtzoo/SNAK

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In a message dated 10/2/03 8:49:57 PM Pacific Daylight Time, Bejenski@...

writes:

> Please pray for us to have the knowledge and wisdom we need to make the

> right decisions here, to do the Lord's will, not our own.

Hi Lynne,

I know I'm a broken record, but I'm going to say it anyway. Listen to your

gut. It will never steer you wrong. Also, regarding the homebound

teacher--the work is different when they work with a tutor. It is simply NOT

the

classroom, and the instruction is completely different. They work one on one

almost exclusively. has a tutor three days a week, on the off days, he

works

on his own. Don't let them give you *rap!!!! I love having a tutor because

it frees me up to be a single Mom not to mention caregiver. What can I say, I

can't do it all??? Even with the tutor, I work with him on two days a week.

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Mitral

Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD, Pulmonary Valve Transplant--July 18.

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Lynn,

I would be happy to talk about what curricula I use and how we homeschool.

If you would like to chat, please contact me directly.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 4, and Leah, 2

Rebekah has CVID and maybe some other stuff

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Diane:

Thank you for replying. This new set of docs agreed with the other. BUT

they at least did some other tests, then told me this wasn't a neurology

problem, that I needed to go see a orthopedic doctor, that the " bubbles " up her

spine were not neuro. He had her bend over, then pushed his hand up her back,

at

half way up she started screaming. He said that is why they can't find what

it is, that it's probably bone structure, not neuro. So off we go to another

doc.

Please keep sending the prayers up!

Thanks,

Lynne

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  • 5 years later...
Guest guest

Hello Sis ~

I am so glad you are feeling better, sorry about

the tick and the meds you are having to take, but

so glad you feel better ! !

Here is a couple articles I found, that may help some

or stimulate more questions............

One theory on many illnesses, or symptoms of illness is

an underlying infection, or mycoplasma, mycotoxin or

nano-bacteria, etc.....I think that may be possible in

implanted devices........no matter how steril they think

their OR ( operating room ) is, maybe organisms still

enter the body.............

or.........

perhaps it is pseudo type infection, the body " thinks "

there is an infection so it acts on it.....either way,

something is reacting .....

In the article below, even tho it is talking about

the endometrial cells, it talks about how dox alters the production

of several inflammatory-related cytokines/chemokines .

Mix that with how silicone can cause silicone toxicity, chemical toxicity and biotoxicity from mold, ( some patients have all three problems ), but most patients with prolonged silicone exposure

( via leak or rupture),develop immune, endocrine, and neurological problems, and some autoimmune, (with certain HLA types.)

So..........so many variables.........but here with doxy, looks like

Dox altered the production of several inflammatory-related cytokines/chemokines allowing for some positive changes.

Doxycycline definition - Medical and Health Information on the Common Cold and Flu on MedicineNet.com

Doxycycline : Brand name: Vibramycin. A synthetic broad-spectrum antibiotic derived from tetracycline . Doxycycline is used for many different types of infections, including respiratory tract infections due to Hemophilus influenzae, Streptococcus pneumoniae, or Mycoplasma pneumoniae. It is also used for the treatment of nongonococcal urethritis (due to Ureaplasma), Rocky Mountain spotted fever, typhus, chancroid, cholera , brucellosis, syphilis, and acne .

Doxycycline is also of relevance to bioterrorism since the CDC (US Centers for Disease Control & Prevention) recommends it as "the drug of choice" for anyone who may have been exposed to anthrax. Doxycycline has fewer side effects, costs less and is more available than Cipro.

AND..............................................................................

Click here: Doxycycline alters the expression of inflammatory and immune-related cytokines and chemokines in human endometrial

http://humrep.oxfordjournals.org/cgi/content/full/21/10/2555

I will only put part of the discussion below, but for the full article, click on the above links................

In recent years, Dox has been studied at subantimicrobial concentrations in human and animal diseases that are characterized by high levels of pro-inflammatory mediators and protease activities, the diseases including osteoarthritis, rheumatoid arthritis, adult periodontitis and pelvic inflammatory disorder . Under these conditions, Dox therapy has been shown to inhibit/reduce the local production of pro-inflammatory mediators and protease activities, resulting in an enhanced reparative process.

During menstruation and in women who experience irregular uterine bleeding due to progesterone-only or progesterone-dominant contraceptives, the endometrial environment is also characterized by elevated levels of pro-inflammatory mediators and protease activity

Therefore, Dox therapy may be useful for the management of irregular bleeding/spotting in women using these contraceptives. Using isolated human ESC, GEC and HES cell lines as in vitro model, we tested this hypothesis and demonstrated that Dox altered the production of several inflammatory-related cytokines/chemokines, without having a significant cytotoxicity, except at high doses. However, the effect of Dox on the production of these cytokines and chemokines varied from an inhibitory or stimulatory effect to no significant change.

Additionally, Dox treatment altered the production of cytokines/chemokines in these cells co-treated with E2, MPA and E2 + MPA as well as cells treated with TNF-, representing the endometrial environment exposed to contraceptives as well as inflammatory conditions, respectively, in a cell-, steroid- and cytokine-dependent manner. How Dox regulates the expression of these and other inflammatory mediators in endometrial cells is yet to be established; considering the cell-type and cytokine-dependent action of Dox, with differential interaction with ovarian steroids and pro-inflammatory mediators, the therapeutic benefit of Dox is likely to involve a complex molecular mechanism(s). However, the results support the hypothesis that Dox, acting independent of its antimicrobial property, regulates the endometrial cytokine/chemokine production, thereby altering their autocrine/paracrine actions that lead to endometrial inflammatory response.

**************We found the real ‘Hotel California’ and the ‘Seinfeld’ diner. What will you find? Explore WhereItsAt.com. (http://www.whereitsat.com/#/music/all-spots/355/47.796964/-66.374711/2/Youve-Found-Where-Its-At?ncid=emlcntnew00000007)

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