Introduction

[Guest guest]

hi julia,

welcome to the list--i hope you find lots of support and helpful info here.

i used to live in richardson and in irving, tx--during my first 2 years of

college, but anyway, i am now in my homestate of NY ( now, i'm up in the

capital, albany).

first off, let me ask you, what is " Waldorf " ?

i do not have any great answers for you to help you with your upcoming

dilemma, i thought lisa's response was good (the book and kit), but i must

say that even if you were soo worried about traveling abroad and got naomi

ALL the vaxes that are possible--it wouldn't guarantee her safety from

disease--children and adults that are fully vaxed still do get some of the

disease that they are vaxed against, so, something to think about. you seem

to be pretty well educated on the subject and aware and utilizing herbal

remedies. i believe that diet has a lot to do with wellness also--organic

and whole foods most important (i try to eat as much organic and whole foods

as i can--i am a vegetarian/drink no cows milk--although i must admit we do

use cheeses made form cow milk--but i have a SERIOUS sweet tooth--i am a

chocoholic/candy etc--it's gonna be the death of me) ) .

i too, was most terrified of meningitis, but am trying to get over my fears.

i am not really afraid of most diseases, but as you said, i don't want my

kids getting them when they are really young (i have a 6yr.old and a 9 mo.

old) .

there's really no good answer, i guess you just do the best you can--boost

her immune system before you leave, eat as best as you can and get sleep.

i'm sure you guys are itching to go visiting family and show off your baby, i

know i would be!!

also, i do not know of any like-minded dr.s in your area--sorry.

anyway, again, welcome to the list--like lisa said, sherri will be back in a

few weeks and hopefully she can help ease your mind--she travels abroad

pretty often.

brigit

[Guest guest]

Welcome....

Couple things. Your date on your computer is wrong. Many of us get lots

of email and if the date is wrong it gets lost in past email...

Get the book by Dr. Starre, MD called " Vaccine Free Prevention

and Treatment with Homeopathy " (it includes foreign diseases)

I also traveled a lot, although mainly it was through Europe. I think

being cautious about drinking bottled water and eating well cooked meat

(juste remembered your vegan), washing hands well, etc. you will

probably be set.

Sherri Nakken who is often on this list travels a lot. She would be more

qualified to answer this BUT she is off galavanting (said with a smile

Sherri when you get to read this) on travels throughout the world. She

won't be back for a couple weeks.

The Starre book is great.. He also sells a homeopathic kit. Also

consider getting Smart Medicine for a Healthier Child by Zand, et al.

This is an excellent resource. I consider it my child's health 'bible'.

To order Starre's book call 1-877-444-7800. You will have to send a

written order to Dr. Starre, 4325 Post Road SE, Jewett, OH 43986

but you will have to call ahead for the price of the book and s & h costs.

Hope it helps. Remember also that since your child has not received the

mercury, formaldehyde, etc that is common in vaccines she will most

likely be able to fight off infection better. Although there are no

guarantees either way.

Brady wrote:

>

> Hi, everyone,

> I just joined and thought I'd introduce myself. I'm , married five

> years, have a one year old daughter, Naomi. She was born at home with a

> midwife (who almost didn't make it too:)...it was a wonderful experience

> and wouldn't have my future babies any other way. We live in the Dallas

> area in Texas. As far as " radical " stuff, we don't vaccinate:), cloth

> diaper, extended breast feed, family bed, and try to eat organic as much

> as possible and we're mostly vegan, and planning to homeschool/waldorf

> school.

>

> I joined this list because I need some moral support and ideas on what

> to do. First of all, I should explain that both my husband and I grew up

> overseas. I'm originally from India but was born and raised in Africa

> all over the continent and my husband grew up in Africa and Asia too.

> We have always wanted to live and visit overseas extensively and all my

> extended family still live in India and my parents still live in

> Africa. They all really want us to visit them with the baby. Therein

> lies my dilemma. We haven't vaccinated Naomi against anything at all.

> I am terrified of taking her overseas unvaxed. We did take a two week

> trip to Bolivia to visit my in laws and after I got there, I discovered

> they were having a measles epidemic. I use a bit of homeopathy and did a

> prophylactic with that and we didn't get measles. *I'm not against her

> getting measles at all, just didn't want her to catch it before she was

> around three and better able to cope with it* Anyways, I need some

> ideas as to how to travel in disease-endemic countries (like India and

> Africa) with an unvaxed child or is that just folly? what do you all

> use for alternative " protection " against the scary ones like Polio?

> Tetanus? Right now, I just flat out refuse to take her till later...(my

> husband keeps asking when and I just can't even think about it right

> now...i feel trapped between a rock and the proverbial hard place)

>

> It's one thing for those who don't vax whose family is mostly here in

> the " safe " western hemisphere...but for us, our families travel

> internationally in mostly underdeveloped countries, and so in order to

> visit them, I feel like I need some kind of " insurance " to make sure

> Naomi doesn't die.

>

> I have to say that the first year was so scary for me...I was terrified

> she'd get meningitis mostly. Or measles/chicken pox/mumps in that first

> year. After we got back from Bolivia, she had this horrible cold that

> just hung on for over two weeks and she developed this nasty cough that

> I was sure was going to turn into Pertussis. But then, I tried some

> herbals and within two days, her cough was gone. My biggest consolation

> is that she's always been a great nurser. I'd like to be able to let go

> of this huge baggage of fear I have that she'll catch something serious

> and die:( because I didn't protect her enough. Logically, I know

> everything about vaccinations and logically, I know how bad they are in

> the long run, but I still worry. It's not like the alternative

> (nonvaxing) is foolproof and riskfree:) I know nothing really is.

>

> The other thing is that I need some recommendations of doctors in the

> DFW area that are okay with unvaxed babies. (besides Dr. Fran

> Rose...she was dropped by my insurance)

>

> Thanks so much and hoping to become a lot more secure with my decision!

> .

>

> ____________NetZero Free Internet Access and Email_________

> Download Now http://www.netzero.net/download/index.html

> Request a CDROM 1-800-333-3633

> ___________________________________________________________

>

>

--

@...

***************************************************************

Any information obtained here is not to be construed as medical

OR legal advice. The decision to vaccinate and how you

implement that decision is yours and yours alone.

[Guest guest]

It sounds to me like it could be hypercoagulation (thick blood.) Any

history of heart disease in your family? Doesn't have to be, but can be.

Lot's of it in mine. Do you feel better lying down than standing up? Do

your feet feel like the blood is pooling there, so you constantly shift

your weight around? I don't think these have to be present to have thick

blood, but they are all true for me and I have it. I am taking blood

thinners along with the antibiotics and ImmunePro.

Cindi

" Dennis Verschuur " <dennis.verschuur@...>

08/22/00 11:16 AM

Please respond to

<egroups>

cc:

Subject: Introduction

After reading the list for a while I shall now introduce myself. My name

is

Dennis ( I am 23 years old and live in Holland)and since October 1995 I've

got CFS. Since then I seek for a solution for this terrible disease and

since I'm on this list I learned a lot from all of you. In Oct. '95 I had

a

pfeiffer (with all the flu-like symptoms etc.) and after the pfeiffer went

away (I had it for 7 days or something) all the flu-like symptoms also

went

away. But the extreme fatigue stayed and since then this fatigue has never

went away and is very stable ( in all those years every day I felt the

same). When I've got the pfeiffer I also got antibiotics because my

doctor

first thought it was throat-infection. Other symptoms I have are

sleepproblems, weak and fatigued muscles, bad concentration and painful

fatigued eyes. These symptoms were that worse that I stopped my

education.

Since 1995 I've had a lot of treatments but none of them was effective for

me. The only treatment I follow now is for a candida-infection which I've

got from some of the medications I've got in the recent years. But the

first

three years there was no candida involved.

The things they found out in all those years.

All the parameters for my immunesystem are normal (all the standard tests

incl. CD8-CD38 and NK-count and activity).

They found a reduced bloodflow in my brains.

They also found the mycoplasma hominis (in the Nicholson lab).

biluribine level is to high: 40 umol/l normal range:3-17 umol/l this

indicates a Gilbert Syndrome. This is since the pfeiffer, before that thes

parameters were normal.

Rnase marker was found in my blood but the value was within the normal

range. Normal range is less than 2 and my value was 1.3.

Can anybody tell if it is possible that the mycoplasma is a major

contributor in my fatigue problems for me without any immunesystem

problems

or is this only possible in people with immunesystem abnormalities.

My sedimentation rate is 1mm (ref range 1-7 mm) can this meen I've got

thick

blood?

I hope somebody can give me some information.

Greetings from Holland

P.S. I hope my English comes in fine.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

As a note: when I started my last bleeding incident that turned out to be a

proto-type reaction to an outbreak of shingles, which means that virus was

already in my system and up and running, we pulled an ISAC same day. My

CD62P and CD62P +ADP and my Plt Act. Index were all normal. So I don't know

if viruses, eg. HHV6, etc. (herpes class) would be caught in this test.

Ruth

[Guest guest]

Hi Dennis,

a SED < 4 or 5 indicates probable hypercoagulation (aka Thick Blood) see

http://www.folkarts.com/idef/blood%5Fthinning.htm.

The hypercoagulationt test is called " Immune System Activation of

Coagulation or ISAC " - and mycoplasma (and several other organisms) can easily

be the cause because it can activate the immune system. The CD62P measurement

can indicates if you are fighting an infection (and thus antibiotics or

antivirials could be needed).

M Lassesen, M.S.

ex " Dr.Gui (MSDN) " , " Dr. VB "

cv: http://www.folkarts.com/kenl/ KenL@...

Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836

----- Original Message -----

From: Dennis Verschuur

My sedimentation rate is 1mm (ref range 1-7 mm) can this meen I've got thick

blood?

[Guest guest]

Eileen, type herbs and Dr. Hulda on your computor, they

both have cures. I suggest drinking lots of distilled water for the first

thing(homemade), get some real salt , do 's 3 day cleanse, eat

mucus free, live food only, read 's books and start the kidney and

liver cleanses . Rid the body of the chemicals and feed it and you will see

good results.

Health Sources

Introduction

>

> Hello All,

>

> My mother went into surgery to see why she has been bleeding from her

> urethra. They found a " spot " on her bladder that is being biosied this

week.

> We think it is cancer, but do not know yet to what extent. What I fear is

> that it is in a later stage due to the fact that she has been complaining

> about bladder distress to her doctors for over a year now to only have

them

> shrug their shoulders and give her anti-biotics.

>

> I am a big believer in, and practice, holistic health and healing.She has

> asked me to look on the internet for any alternative help or " cures " .

Since

> there is alot of quakery out there, I ask anyone on this list for helpful

> information to point us in a successful direction.

>

> Sincerly,

> Eileen Betancourt

>

>

> Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

>

[Guest guest]

Hi Eileen,

How many changes is your mom willing to make?

This can be seen as a wake up call to start changing her diet and starting

to carabout what is in the food she eats.

A very good program for can be found on the mailto:fightforlifeonelist

board Dr.Wallace,Ph.D. in nutrition and experienced in giving her

nutritional support programs for free is an excellent source. I can mail you

some materials that I put together if you want

Arnold Gore

Consumers Health Freedom Coalition

Introduction

>

> Hello All,

>

> My mother went into surgery to see why she has been bleeding from her

> urethra. They found a " spot " on her bladder that is being biosied this

week.

> We think it is cancer, but do not know yet to what extent. What I fear is

> that it is in a later stage due to the fact that she has been complaining

> about bladder distress to her doctors for over a year now to only have

them

> shrug their shoulders and give her anti-biotics.

>

> I am a big believer in, and practice, holistic health and healing.She has

> asked me to look on the internet for any alternative help or " cures " .

Since

> there is alot of quakery out there, I ask anyone on this list for helpful

> information to point us in a successful direction.

>

> Sincerly,

> Eileen Betancourt

>

>

> Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

>

[Guest guest]

Arnold;

Would it be possible for me to get the same information that you are

sending to Eileen? Sounds like what I need to give my dad, that's fearing he

has bladder cancer. If you are sending them in the mail, I'll send you a

self addressed envelope. I wasn't sure if you meant mail or e-mail. Thanks!

Your friend,

Introduction

>

>

> >

> > Hello All,

> >

> > My mother went into surgery to see why she has been bleeding from her

> > urethra. They found a " spot " on her bladder that is being biosied this

> week.

> > We think it is cancer, but do not know yet to what extent. What I fear

is

> > that it is in a later stage due to the fact that she has been

complaining

> > about bladder distress to her doctors for over a year now to only have

> them

> > shrug their shoulders and give her anti-biotics.

> >

> > I am a big believer in, and practice, holistic health and healing.She

has

> > asked me to look on the internet for any alternative help or " cures " .

> Since

> > there is alot of quakery out there, I ask anyone on this list for

helpful

> > information to point us in a successful direction.

> >

> > Sincerly,

> > Eileen Betancourt

> >

> >

> > Get HUGE info at http://www.cures for cancer.ws, and post your own links

there.

> Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

> visiting http://www.bobhurt.com/subunsub.mv

> >

>

>

>

> Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

>

>

[Guest guest]

Thanks for all the welcomes! To Terri: I've lived in B'ville all my

life, probably be here till the day I die! Wishing I could move to

Georgia, where my brother moved 5 years ago because it's so beautiful

and no snow!!!!

I have my first craft show this Saturday. I'm extremely nervous about

it. I've been making soap for the last week! My bars are pretty much

plain since I don't have any fancy molds yet. I'm hoping the pretty

colors and unique scents will attract people. I've also got bath salts

and fizzies I'll be bringing.

I just did 200 cherubs for a friends wedding too. I hope to get some

fancier molds soon so I can do baby shower/wedding favors.

I got some baskets from today-They are terrific!!! I'm going to

use them to display my stuff at the craft shows.

Colleen

Country Meadow Creations

[Guest guest]

Hi devlins5@...

Many of us have noticed our childrens symptoms after a specific event. My

son, whose now 17, at 12 experienced the death of a friend by a drunk

driver, his grandparents separation and then we moved house. This

combination broke down his ability to hide the symptoms of OCD that we

eventually realized had begun in infancy! He was the first to be diagnosed

in our family.

We all have wonderful children that are living a tremendously difficult

life. The smile on their faces is worth gold! My kids are all very polite,

easy to get along with, etc.... but that is outside of my home! At home we

see the ocd monsters! (all three and dad have ocd and depression).

Intense fears, numbers, intrusive thoughts, and rituals are very typical

of ocd. All can be treated with the correct form of therapy, and if

necessary, medication. You mention going to a therapist soon. Is this a

cognitive behavioural therapist experienced in using the Exposure and

Response Prevention method of treating ocd? Does s/he have experience with

ocd and children?? Does the therapist provide a parents support group? any

family counselling around living with someone with ocd?

Yes, its difficult to tell people that we live in an imperfect world. Its

hard mostly because of the stigma of mental illness. OCD is a

neurobiological disorder. The brain doesnt work right! Know that you are

among friends here. We do understand!

You must always remember to take care of yourself. If you collapse, your

whole family will suffer. Try and find a support person for yourself that

will counsel you during this challenging time. Take some time out to do

things just for yourself.

take care, wendy, in canada

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

HI Devlin:

Welcome to the list. Seven is a very common age for onset of OCD in young

boys. I have a son, now 13, that we realized has OCD when he was 10. We

think it started around 7 for him too. HIs name is Steve and he is now

doing very well, having learned to cope with OCD through doing cognitive

behavior therapy (CBT) with exposure and response prevention (E & RP).

The symptoms you describe, as well as being very obedient and kind, were

also very much part of Steve's OCD. He told me he thought he was a bad

person for having bad thoughts/obsessions and so behaved extra good. I

used to get lots of compliments and he was always teacher's pet at school.

Now he has been able to lighten up considerably and we have had many trying

moments helping him to recover from severe OCD and MDD (major depressive

disorder). He takes medication for the MDD and his CBT therapist is

working on his MDD with CBT too.

It is very hard to write about OCD at first but as you get more used to us

all here, who share much of what you have described, it will get easier.

If you share whereabouts you live, there may well be someone in your area

who can recommend local resources to you. We also have two wonderful list

docs who give advice here. Dr. Tamar Chansky is from Pennsylvania and Dr.

Aureen Pinto Wagner is from New York. They have both written books about OCD.

Good luck, take care, aloha, kathy (H)

kathyh@...

At 01:28 AM 10/25/2000 -0000, you wrote:

>Hi I am just at the start of understanding OCD and the implications

>it will have for my son who is age nine. About two years ago, close

>to the Columbine incident, my son began to experience intense fears.

>That's when he began to have persistant issues with numbers. Now,

>most recently, he has confided in us that he is thinking many

>uncomfortable thoughts and still has persistant rituals involving

>specific numbers.

>

>On the outside, everyone comments how obdedient and kind my son is.,

>however I wonder how much he is suffering on the inside. I'm anxious

>to meet with a therapist which we have an appointment to do soon. He

>is also very concerned with germs and washing his hands.

>

>It's difficult for me to write all this down and share with people I

>do not know, however, I want to do everything I can to better

>understand my son's condition so as to help him and our entire

>family. Any thoughts?

[Guest guest]

Hi - I know this is a scary time for you. I was in your shoes two years

ago when my Joe was 7 years old. Now, after two years, lots of exposure and

response therapy, medication for Joe and medication for me, we are doing

much, much better. It has not been easy and the struggles have not

disappeared, but we are all stronger because of them. I am a better parent,

a better person, and a better teacher because of my recent experiences. I

have finally gotten to the point where I can look at my son with pride

instead of embarrasement. Pride, because like your son, he is kind, gentle,

and has a beautiful personality. I focus on his positive qualities - he has

many, and believe that those qualities will carry him through the turbulent

times and aid him in becoming a successful adult.

Although I did notice some early anxiety in Joe, he had an aburpt start just

as your son did. He was taking swimming lessons and his entire class was

jumping off the diving board with their life jackets on. Joe got on the

board and was too fearful to jump so his teacher dropped him off the board

just as she did to several other timid students. All the other kids came up

smiling, but Joe popped up with a look of terror. When he came out of the

dressing room he had some facial ticcing and he was hopping over floor

patterns. I will never forget it. On a happy note - Joe now loves the

water and jumps off the diving board without a life jacket every chance he

gets! I think the medicine made that possible.

Good luck - Eliza in WI

Introduction

> Hi I am just at the start of understanding OCD and the implications

> it will have for my son who is age nine. About two years ago, close

> to the Columbine incident, my son began to experience intense fears.

> That's when he began to have persistant issues with numbers. Now,

> most recently, he has confided in us that he is thinking many

> uncomfortable thoughts and still has persistant rituals involving

> specific numbers.

>

> On the outside, everyone comments how obdedient and kind my son is.,

> however I wonder how much he is suffering on the inside. I'm anxious

> to meet with a therapist which we have an appointment to do soon. He

> is also very concerned with germs and washing his hands.

>

> It's difficult for me to write all this down and share with people I

> do not know, however, I want to do everything I can to better

> understand my son's condition so as to help him and our entire

> family. Any thoughts?

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy ,

Roman, and Jackie Stout. Subscription issues, problems, or

suggestions may be addressed to Louis Harkins, list owner, at

harkins@... .

>

>

>

>

[Guest guest]

Hi , welcome to the list. Most differently, this is the place for

you. You will learn so much to help you get started. The people on this

list are great about helping. Don't hesitate to ask questions, they will be

welcome and answered. There is a lot of great receipts in the library just

click on it at the bottom . I have a very simple kitchen soap recipe that

just contains coffee and Crisco if you would like it. Sharen

Introduction

> Hello,

>

> I am very very new to making toiletries and soap. In fact, I have not

made

> anything yet. I want to do it for hobby, to save money, and to make

better

> products than what I can buy. I hope that people who are new to this are

> welcome to this forum. If they are not let me know so that I do not

become

> a pest. I am so excited about making these things. First I want to start

> out with stuff I can easily get without mail ordering anything and if I

get

> really hooked than I will buy all kinds of stuff.

>

> I am 26 years old. I am married, I just celebrated my 6 year anniversary

> this past Sunday. Well, I guess that's enough personal stuff as to not

bore

> you. I live in a very small town in New Mexico so, I do have a feeling I

> might have some trouble finding some of the ingredients needed and also

some

> of the equipment without paying an arm and a leg on shipping.

>

> I do have one major concern before I get started. That concern is with

> bacteria and molds growing in things I make. I have seen about a

particular

> additive you can put in Lotion, but what about lip balms and liquid soaps,

> skin toners, and so forth?

>

> Thanks,

>

>

>

>

>

[Guest guest]

I would like to have this recipe if you don't mind. Thank you.

> [Original Message]

> From: Sharen Taunton <stau@...>

> <christina@...>; <egroups>

> Date: 10/28/00 4:04:11 AM

> Subject: Re: Introduction

>

> Hi , welcome to the list. Most differently, this is the place

for

> you. You will learn so much to help you get started. The people on this

> list are great about helping. Don't hesitate to ask questions, they will

be

> welcome and answered. There is a lot of great receipts in the library

just

> click on it at the bottom . I have a very simple kitchen soap recipe

that

> just contains coffee and Crisco if you would like it. Sharen

> Introduction

>

>

> > Hello,

> >

> > I am very very new to making toiletries and soap. In fact, I have not

> made

> > anything yet. I want to do it for hobby, to save money, and to make

> better

> > products than what I can buy. I hope that people who are new to this

are

> > welcome to this forum. If they are not let me know so that I do not

> become

> > a pest. I am so excited about making these things. First I want to

start

> > out with stuff I can easily get without mail ordering anything and if I

> get

> > really hooked than I will buy all kinds of stuff.

> >

> > I am 26 years old. I am married, I just celebrated my 6 year

anniversary

> > this past Sunday. Well, I guess that's enough personal stuff as to not

> bore

> > you. I live in a very small town in New Mexico so, I do have a feeling

I

> > might have some trouble finding some of the ingredients needed and also

> some

> > of the equipment without paying an arm and a leg on shipping.

> >

> > I do have one major concern before I get started. That concern is with

> > bacteria and molds growing in things I make. I have seen about a

> particular

> > additive you can put in Lotion, but what about lip balms and liquid

soaps,

> > skin toners, and so forth?

> >

> > Thanks,

> >

> >

> >

> >

> >

[Guest guest]

Terri

I've only been on this list for about 2 weeks but I'm already sure

that joining was a good move - these are caring people.

For my part, welcome - I just wish none of us needed to be here

but 'if wishes were fishes we'd all be running sushi bars' as my

mother used to say to me.

Stay strong.

LOL

[Guest guest]

Terri,

Welcome to our group. You will find a great bunch of people to laugh with,

cry with, be there for you, whatever.

Don't ever hesitate to ask questions or give your own info, it's always

welcome and there's not much (if anything) that we don't talk about.

Welcome and hope to see you posting.

[Guest guest]

Hello Terri,

Welcome to the group! Yikes, it sounds like you have been through a lot!

You will enjoy this little community of great friends!

*hugs*

4

[Guest guest]

Hi Terri!!

Welcome to the group!! I'm so sorry it's taken me soo long to welcome you--I've

been dealing with some bad days of my own

I'm , I joined this group as a caregiver to my son, . This group has

been absolutely wonderful to me. I hope that you find as much love and support

here as I have.

The meningitis stuff sounds really yucky!! *hugs* Do you know when a flare is

coming on or does it just hit suddenly?

*Hugs*

Terri Brewczynski wrote:

> Hi, my name is Terri, I'm 49, currently live in the deep south. Mom

> to 3 adult children and one two year old. Married to my husband for

> almost 8 years.

>

> I have Mollaret's Meningitis. Also know as recurring asceptic

> meningitis. I have had five episodes so far since 1994, three of

> which were in a six month period. I am now luckily, on Social

> Security. In my " former life " , I was a paralegal. Meningitis is an

> inflamation of the lining around the brain. Mollaret's is actually

> called a syndrome since they can't figure out what else to call it.

> There have been a very small number of people diagnosed with it. Less

> then 100 in the last 40 years. They don't know the cause, don't have

> a cure and don't for the most part, have a treatment. It causes

> headaches that never go away, fatigue, panic and anxiety attacks,

> mood swings and a host of other problems.

>

> I hope I will be welcome on this list although I'm sure none of us

> really want to be here.

>

> The Being Sick Community

>

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> “Hold on to what is good, even if it's a handful of earth. Hold on to what you

believe, even if it's a tree that stands by itself. Hold on to what you must do

even, if it's a long way from here. Hold on to your life, even if it's easier to

let go. " - Pueblo Prayer

[Guest guest]

, thank you for the welcome. Know what you mean

about things getting busy. I have a two year old in my

house!

No, I never know when the meningitis is going to hit.

I can wake up feeling fine and by nightfall (or

sooner) be in the hospital. It usually starts with a

bad headache. My poor husband, if I tell him I have a

headache he always asks if it's a " bad one " , meaning

" do I take you to the hospital. " I have headaches

every day of one degree or another. I have only talked

to one other person that has this same thing. Most

days I am pretty functional, other days..like

today...I'm not worth a darn.

I feel lucky that I can lead a somewhat normal life in

comparison to some on the list. Hope to make some new friends.

=====

searching for Deborah

dob 1/14/57 in nna, Fl

Relinquished in Chicago, 1961

brother and 5 other siblings searching

Half-sib found 1-16-00!

__________________________________________________

[Guest guest]

Hi Terri!

" I can wake up feeling fine and by nightfall (or

sooner) be in the hospital. "

OOOH, hon, this sounds just nasty!! Must be very stressful to never know when

it's going to hit again. *hugs*

Hope your day is going okay :-)

*hugs*

[Guest guest]

wrote:OOOH, hon, this sounds just nasty!! Must

be very stressful to never know when it's going to hit

again. *hugs*

, thanks for the hugs. Yes, at times it does get

stressful. My hubby freaks every time I get a bad

headache but have learned to " wait it out " and see

what happens. I just worry because we have a two year

old that I know needs to be taken care of. Also know

that my problems are small in comparison with what

some of you go through. Just feel thankful that most

days I'm pretty functional.

=====

searching for Deborah

dob 1/14/57 in nna, Fl

Relinquished in Chicago, 1961

brother and 5 other siblings searching

Half-sib found 1-16-00!

__________________________________________________

[Guest guest]

Welcome and ,

I'm sorry that you aren't well. You've discovered a great eGroup. Hope you

stick around and enjoy yourself!

anne

I believe that friends are quiet angels who lift us to our feet when our

wings have trouble remembering how to fly.

[Guest guest]

Just a critique of your site

A quick scan of your site picked up these

?Definition

>The illnesses that fit the criteria for CFS are manifested by

>profound fatigue, lasting more than six months.

You need to add ... " This is pure unadulterated bullshit put out by

the government/CDC/NIH "

>Somatization disorder (SD) can generally be easily distinguished

>from CFS and FMS by the experienced evaluator

Somatization is an imaginary disorder created by psychiatrists.

>CFS is a functional illness. A functional illness is one in which

>there is no discernable anatomical abnormality

CFS is a derogatory epithet created by the government.

" CFS " is a systemic disease that affects many body system. A physician

who does the proper testing and is knowledgeable about the disease

can diagnose the disease. The ones that can't usually need more

training.

>Functional illnesses are a puzzle to most doctors because it is

>difficult to run controlled studies

Wrong. The government has defunded serious research into these

diseases especially the ones classified as " auto-immune diseases " .

They have carried out a massive coverup of a large problem. It is not

difficult to run controlled studies in the disease. It is difficult to

get funding for well controlled serious studies. The studies the

government funds usually have poor controls since the have political

objectives in funding them.

>In our present form of democracy, people have to campaign in order

>to be elected. Therefore, candidates are required to have enormous

>stamina, salesmanship, and political acumen. They also tend to be

>ideological thinkers, and have an overzealous need for power and

>control.

If you think that politicians on this planet are " ideological

thinkers " , you still haven't matured in your understanding of

politics and political systems. You have a long way to go.

Also, you make this bizarre assumption that the " politicians " control

the system. In the real world, it isn't that simple. Many politicans

just like being in the spotlight so many are just secondary or third

level players to very powerful institutions. Many get elected because

they come from or are backed by these powerful institutions.

Fluffy

> My name is , and I am a medical doctor. I have been ill with

> CFS for eight years, after practicing medicine for twenty years. I

> am just starting to try Dr. Cheney's protocol based on the recent

> tape recordings made in his office. I am extremely grateful for

this

> and would support in any way possible continuing efforts to tape

> record office visits with Cheney, Bell, Maslin, etc. If any of you

> plan to do this in the future, let me know, and if it adds to our

> fund of practical treatment options, I will be happy to make a

> financial contribution to you.

>

> Please check out my CFS web site at www.cfsdoc.org

>

> I am doing a systems analysis of the dysfunction in our political

and

> medical systems. I present a diagnosis and treatment plan that not

> only won't cost anything, but will save money, and at the same time

> repair the defective part. You can read it at www.world-

> prosperity.org/.

>

>

> cfsdoc@p...

[Guest guest]

Hi , I did go to your website and found it a good place

for anyone wanting Cheney's protocol pulled together under

one roof. I am a patient of his and would love to contribute

to the transcribed info from Cheney when I am well enough to

do this. I want my local HMO doc to check this site out.

Thanks, L

ps. I know the Bliss of Freedom and I use the same Rumi poem

on my class syllabus

>My name is , and I am a medical doctor. I have been ill with

>CFS for eight years, after practicing medicine for twenty years. I

>am just starting to try Dr. Cheney's protocol based on the recent

>tape recordings made in his office. I am extremely grateful for this

>and would support in any way possible continuing efforts to tape

>record office visits with Cheney, Bell, Maslin, etc. If any of you

>plan to do this in the future, let me know, and if it adds to our

>fund of practical treatment options, I will be happy to make a

>financial contribution to you.

>

>Please check out my CFS web site at www.cfsdoc.org

>

>I am doing a systems analysis of the dysfunction in our political and

>medical systems. I present a diagnosis and treatment plan that not

>only won't cost anything, but will save money, and at the same time

>repair the defective part. You can read it at www.world-

>prosperity.org/.

>

>

>cfsdoc@...

>

>

>

>

>

>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.

[Guest guest]

,

I looked at your websites and I applaud what you are

trying to do with both. It is very difficult to

document the treatment options for CFS as they are

changing frequently. I think your site is a good

start at documenting the current options. I also

found it to be realistic about the need for patients

to recognize our limits! It's good work - thank you

for putting this together.

Be well! Jennie

--- cfsdoc@... wrote:

> My name is , and I am a medical doctor. I have

> been ill with

> CFS for eight years, after practicing medicine for

> twenty years. I

> am just starting to try Dr. Cheney's protocol based

> on the recent

> tape recordings made in his office. I am extremely

> grateful for this

> and would support in any way possible continuing

> efforts to tape

> record office visits with Cheney, Bell, Maslin, etc.

> If any of you

> plan to do this in the future, let me know, and if

> it adds to our

> fund of practical treatment options, I will be happy

> to make a

> financial contribution to you.

>

> Please check out my CFS web site at www.cfsdoc.org

>

> I am doing a systems analysis of the dysfunction in

> our political and

> medical systems. I present a diagnosis and

> treatment plan that not

> only won't cost anything, but will save money, and

> at the same time

> repair the defective part. You can read it at

> www.world-

> prosperity.org/.

>

>

> cfsdoc@...

>

>

>

>

__________________________________________________