new member intro

[Guest guest]

Hi

Try contacting Sherry Wield @ Illinois Vaccine awareness @ 847=836-0488

Jim

________________________________

From: sjhansler <sjhansler@...>

Vaccinations

Sent: Thursday, July 9, 2009 9:27:38 PM

Subject: Re: New member intro

I had initially checked our school district's website and it said a 10 year

tetnus booster was required...but after your note, I did go to the Illinois Dept

of Public Health and reviewed the requirements just in case it was a " school

rule " and not a state law (we're in a public school). Sure enough they do

require the 10 year booster. So now I have to figure out what to do for an

exemption.

I would have started this process earlier but when they sent the form home at

the end of 8th grade, he was marked " Pass/Comply " so I didn't realize it was

going to be an issue until I took him for his physical.

I've started reviewing information in the files and it appears that I have to

write a letter of religious exemption.. It then sounds like the school has to

accept it. Do I just turn the letter in with the school physical? I'm a little

afraid because several of the posts talk about IL being " tricky " . There was also

a list of contacts and some of the posts suggest contacting someone on that

list. Is that the best thing for me to do?

Any insight is appreciated.

Thanks,

Sherri

>

> Welcome, Sherri! How funny that they get all crazy about tetanus considering

it's not even a communicable disease. Isn't that the whole reason schools care

about disease, contagion? Jeez, Louise.

>

> I would check your state laws first. It might be the doctor who recommends the

tetanus booster, and not the law at all.

>

> Winnie

>

> New member intro

> Vaccinations

>

> > Hi. I just want to post a quick introduction. My name is

> > Sherri and I live in a suburb of Chicago. I'm married, have 2

> > boys and a yellow lab. I've come to this list in " stages " over

> > the last couple of years. My dog had a vaccine reaction almost

> > 2 years ago. At the time, I didn't know what caused the kidney

> > failure, but learned about raw feeding and switched him over.

> > From there I learned about the dangers of vaccines and can kick

> > myself for years of going along with them (I just didn't know

> > any better). Of course, if I'm not going to give my dog

> > vaccines, I'm certainly not going to give them to my children.

> > I thought I wouldn't have a problem since my boys are in high

> > school - they had all the " standard " childhood shots. However,

> > when I took my youngest to the dr for his physical for entering

> > 9th grade, they said he needs a tetnus booster. I posted on the

> > TAV list to see if someone could point me in the right direction

> > for information on exemptions in IL - and was referred to this

> > list for humans. I'll be looking in the files, and searching

> > past messages to find out what I need to do for an exemption. I

> > know I need to find the right paperwork, but also gain the

> > confidence to stand up the school in case they try to give me

> > any problems or pressure me in to giving him the shot. I'm glad

> > to be here and can already tell I'm going to learn so much!!

> >

> > Sherri

> >

> >

>

>

>

[Guest guest]

Thank you so much!!

> >

> > Welcome, Sherri! How funny that they get all crazy about tetanus considering

it's not even a communicable disease. Isn't that the whole reason schools care

about disease, contagion? Jeez, Louise.

> >

> > I would check your state laws first. It might be the doctor who recommends

the tetanus booster, and not the law at all.

> >

> > Winnie

> >

> > New member intro

> > Vaccinations

> >

>I'm certainly not going to give them to my children.

> > > I thought I wouldn't have a problem since my boys are in high

> > > school - they had all the " standard " childhood shots. However,

> > > when I took my youngest to the dr for his physical for entering

> > > 9th grade, they said he needs a tetnus booster. I'll be looking in the

files, and searching

> > > past messages to find out what I need to do for an exemption. > > >

> > > Sherri

[Guest guest]

Yes, ask for help on this. It's not an issue until school starts anyway so you

should have plenty of time to get the letter in.

Winnie

New member intro

> > Vaccinations

> >

> > > Hi. I just want to post a quick introduction. My name is

> > > Sherri and I live in a suburb of Chicago. I'm married, have

> 2

> > > boys and a yellow lab. I've come to this list in " stages "

> over

> > > the last couple of years. My dog had a vaccine reaction

> almost

> > > 2 years ago. At the time, I didn't know what caused the

> kidney

> > > failure, but learned about raw feeding and switched him

> over.

> > > From there I learned about the dangers of vaccines and can

> kick

> > > myself for years of going along with them (I just didn't

> know

> > > any better). Of course, if I'm not going to give my dog

> > > vaccines, I'm certainly not going to give them to my

> children.

> > > I thought I wouldn't have a problem since my boys are in

> high

> > > school - they had all the " standard " childhood shots.

> However,

> > > when I took my youngest to the dr for his physical for

> entering

> > > 9th grade, they said he needs a tetnus booster. I posted on

> the

> > > TAV list to see if someone could point me in the right

> direction

> > > for information on exemptions in IL - and was referred to

> this

> > > list for humans. I'll be looking in the files, and searching

> > > past messages to find out what I need to do for an

> exemption. I

> > > know I need to find the right paperwork, but also gain the

> > > confidence to stand up the school in case they try to give

> me

> > > any problems or pressure me in to giving him the shot. I'm

> glad

> > > to be here and can already tell I'm going to learn so much!!

> > >

> > > Sherri

> > >

> > >

> >

> >

> >

[Guest guest]

Welcome Sherri! I am from the suburbs of Chicago too and know a ton of non vax

parents. Though my little one is too young for school yet I dont see there being

a problem when she is. www.homefirst.com has a vaccine conference (in Rolling

Meadows) and the lawyer/doc goes over how to word exemptions in IL. Nothing

confusing just need to state why its against your religious beliefs in the

exemption.

tanya

[Guest guest]

In message <huvl70+bnq8eGroups> you wrote:

> My name is , I live in Massachusetts.

Welcome on this Kombucha forum!

Plenty of Kombucha agony aunts and uncles here to come to your assistance

if you need it! :-)

You sure seem to live a yummy-healthy life with all your home-made goodies!

All the best to you with God's blessings,

Margret:-)

--

+------------------ Minstrel@... --------------------+

http://www.therpc.f9.co.uk/family/scobygrow/home.html

http://bavarianminstrel.wordpress.com

creation.com

Create in me a clean heart, O God, and renew a steadfast spirit within me.

(Ps.51:10)

[Guest guest]

In message <huvl70+bnq8eGroups> you wrote:

> My name is , I live in Massachusetts.

Welcome on this Kombucha forum!

Plenty of Kombucha agony aunts and uncles here to come to your assistance

if you need it! :-)

You sure seem to live a yummy-healthy life with all your home-made goodies!

All the best to you with God's blessings,

Margret:-)

--

+------------------ Minstrel@... --------------------+

http://www.therpc.f9.co.uk/family/scobygrow/home.html

http://bavarianminstrel.wordpress.com

creation.com

Create in me a clean heart, O God, and renew a steadfast spirit within me.

(Ps.51:10)

[Guest guest]

welcome Carolyn!!

you will find many friends on here im sure. Can you give me the link to

craigslist please as i have scobys to share too. Anyone wanting one in the UK

please email me. i only charge for postage.

(UK)

>

> Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started making

kombucha just this year and I love to pass along SCOBYs to people who want to

brew their own kombucha. My first SCOBY came from a trade I made with a guy on

Craigslist--my lilies of the valley for his kombucha baby. I was really excited

to get started, so I drove the 120 mile round trip between here and Denver on a

Saturday morning, and I was in business! Since I know that's not a possibility

for everyone, I'm on a mission to make SCOBYs available for free in my home

town. I put up an ad on the local Craigslist, and I've posted offers on the

bulletin boards at a couple of the local natural food stores. It makes me happy

to share, and I've had quite a few takers.

>

> I'm happy to have found this group, and I look forward to getting to know you

all better!

>

>

[Guest guest]

Carolyn, Welcome. When you offer SCOBYs on Craigs list, what heading are you

offering it under? On our local one, there is no heading for FREE or Trade,

so I'm not sure where it should go

Carol

In Finger Lakes/Upstate, NY

On Tue, Jul 20, 2010 at 10:27 AM, Carolyn Cline <rbrlubber@...> wrote:

>

>

> Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started making

> kombucha just this year and I love to pass along SCOBYs to people who want

> to brew their own kombucha. My first SCOBY came from a trade I made with a

> guy on Craigslist--my lilies of the valley for his kombucha baby. I was

> really excited to get started, so I drove the 120 mile round trip between

> here and Denver on a Saturday morning, and I was in business! Since I know

> that's not a possibility for everyone, I'm on a mission to make SCOBYs

> available for free in my home town. I put up an ad on the local Craigslist,

> and I've posted offers on the bulletin boards at a couple of the local

> natural food stores. It makes me happy to share, and I've had quite a few

> takers.

>

> I'm happy to have found this group, and I look forward to getting to know

> you all better!

>

>

[Guest guest]

the free section is under the " for sale " . I cked your area its there. click

on " post to classifieds " from the front page, then you have to click the

" for sale " , then find the link that says " free stuff "

they now have the option of creating an account, which makes it easier if

you know youll be doing more then one post for the same thing....but either

way you should find it a pretty easy process. gl

On Tue, Jul 20, 2010 at 11:24 AM, Carol Karnes <cakarnes@...> wrote:

>

>

> Carolyn, Welcome. When you offer SCOBYs on Craigs list, what heading are

> you

> offering it under? On our local one, there is no heading for FREE or Trade,

> so I'm not sure where it should go

> Carol

> In Finger Lakes/Upstate, NY

>

>

> On Tue, Jul 20, 2010 at 10:27 AM, Carolyn Cline

<rbrlubber@...<rbrlubber%40qwest.net>>

> wrote:

>

> >

> >

> > Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started

> making

> > kombucha just this year and I love to pass along SCOBYs to people who

> want

> > to brew their own kombucha. My first SCOBY came from a trade I made with

> a

> > guy on Craigslist--my lilies of the valley for his kombucha baby. I was

> > really excited to get started, so I drove the 120 mile round trip between

> > here and Denver on a Saturday morning, and I was in business! Since I

> know

> > that's not a possibility for everyone, I'm on a mission to make SCOBYs

> > available for free in my home town. I put up an ad on the local

> Craigslist,

> > and I've posted offers on the bulletin boards at a couple of the local

> > natural food stores. It makes me happy to share, and I've had quite a few

> > takers.

> >

> > I'm happy to have found this group, and I look forward to getting to know

> > you all better!

> >

> >

[Guest guest]

Thank you all so much for the warm welcome! This morning, I bottled my first

batch of kombucha brewed from chai teabags. It's absolutely wonderful, and I'm

thinking I might just keep doing it that way from now on.

Carolyn

>

> Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started making

kombucha just this year and I love to pass along SCOBYs to people who want to

brew their own kombucha. My first SCOBY came from a trade I made with a guy on

Craigslist--my lilies of the valley for his kombucha baby. I was really excited

to get started, so I drove the 120 mile round trip between here and Denver on a

Saturday morning, and I was in business! Since I know that's not a possibility

for everyone, I'm on a mission to make SCOBYs available for free in my home

town. I put up an ad on the local Craigslist, and I've posted offers on the

bulletin boards at a couple of the local natural food stores. It makes me happy

to share, and I've had quite a few takers.

>

> I'm happy to have found this group, and I look forward to getting to know you

all better!

>

>

[Guest guest]

Thank you all so much for the warm welcome! This morning, I bottled my first

batch of kombucha brewed from chai teabags. It's absolutely wonderful, and I'm

thinking I might just keep doing it that way from now on.

Carolyn

>

> Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started making

kombucha just this year and I love to pass along SCOBYs to people who want to

brew their own kombucha. My first SCOBY came from a trade I made with a guy on

Craigslist--my lilies of the valley for his kombucha baby. I was really excited

to get started, so I drove the 120 mile round trip between here and Denver on a

Saturday morning, and I was in business! Since I know that's not a possibility

for everyone, I'm on a mission to make SCOBYs available for free in my home

town. I put up an ad on the local Craigslist, and I've posted offers on the

bulletin boards at a couple of the local natural food stores. It makes me happy

to share, and I've had quite a few takers.

>

> I'm happy to have found this group, and I look forward to getting to know you

all better!

>

>

[Guest guest]

Hi Carolyn,

Wonderful to feel your enthusiasm! Those of us who have been brewing for many

years tend to forget the thrill of our first successful brews.

Various blends of Green, Oolong and Black Teas including Earl Grey make some

incredible KT. Try them all and find what you like the best.....they are all

good.

You can also add any flavoring you like after fermenting at the time that you

bottle your KT. Berry flavors are good too and Ginger, Lemon, Elderflower, etc.

etc etc.

Peace, Love and Harmony,

Bev

> >

> > Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started

making kombucha just this year and I love to pass along SCOBYs to people who

want to brew their own kombucha. My first SCOBY came from a trade I made with a

guy on Craigslist--my lilies of the valley for his kombucha baby. I was really

excited to get started, so I drove the 120 mile round trip between here and

Denver on a Saturday morning, and I was in business! Since I know that's not a

possibility for everyone, I'm on a mission to make SCOBYs available for free in

my home town. I put up an ad on the local Craigslist, and I've posted offers on

the bulletin boards at a couple of the local natural food stores. It makes me

happy to share, and I've had quite a few takers.

> >

> > I'm happy to have found this group, and I look forward to getting to know

you all better!

> >

> >

[Guest guest]

Hi Carolyn,

Wonderful to feel your enthusiasm! Those of us who have been brewing for many

years tend to forget the thrill of our first successful brews.

Various blends of Green, Oolong and Black Teas including Earl Grey make some

incredible KT. Try them all and find what you like the best.....they are all

good.

You can also add any flavoring you like after fermenting at the time that you

bottle your KT. Berry flavors are good too and Ginger, Lemon, Elderflower, etc.

etc etc.

Peace, Love and Harmony,

Bev

> >

> > Hi there! I'm Carolyn, and I live in Colorado Springs, CO. I started

making kombucha just this year and I love to pass along SCOBYs to people who

want to brew their own kombucha. My first SCOBY came from a trade I made with a

guy on Craigslist--my lilies of the valley for his kombucha baby. I was really

excited to get started, so I drove the 120 mile round trip between here and

Denver on a Saturday morning, and I was in business! Since I know that's not a

possibility for everyone, I'm on a mission to make SCOBYs available for free in

my home town. I put up an ad on the local Craigslist, and I've posted offers on

the bulletin boards at a couple of the local natural food stores. It makes me

happy to share, and I've had quite a few takers.

> >

> > I'm happy to have found this group, and I look forward to getting to know

you all better!

> >

> >

[Guest guest]

In a message dated 07/09/2010 22:46:58 GMT Daylight Time, Mum231ASD@... writes:

Also has anyone used Chlorella (a natural chelater) and if yes, is it good and how did it help.

Please advise?

>>Only advice I can give is don't give chorella. Just because something is natural does not mean its safe. Have you done a hair test and applied the counting rules? Info here on both

http://home.earthlink.net/~moriam/

Welcome, many of us are meeting up at the weekend for Treating Autism conference, see here for info

http://www.treatingautism.co.uk/events/436/treating-autism-parent-to-parent-conference-london/

Mandi x

[Guest guest]

In a message dated 07/09/2010 22:46:58 GMT Daylight Time, Mum231ASD@... writes:

Also has anyone used Chlorella (a natural chelater) and if yes, is it good and how did it help.

Please advise?

>>Only advice I can give is don't give chorella. Just because something is natural does not mean its safe. Have you done a hair test and applied the counting rules? Info here on both

http://home.earthlink.net/~moriam/

Welcome, many of us are meeting up at the weekend for Treating Autism conference, see here for info

http://www.treatingautism.co.uk/events/436/treating-autism-parent-to-parent-conference-london/

Mandi x

[Guest guest]

HelloOn 7 September 2010 22:25, <Mum231ASD@...> wrote:

From: chandranvinoo@...To: Autism Treatment-owner Sent: 07/09/2010 21:28:53 GMT Daylight TimeSubj: Re: File - welcome message

 

Hi Everyone

 

I have a daughter 8 years who is autistic.  i am in my 30s and treating my own asperger syndrome amongst other things.

 

She has a habit of eating soap, playdough, cream.  Anyone knows what I can do for her to get rid of this habit.  She knows that she should not eat it but cant help it.She is craving soft textures and also the gluten and milk items that are in those products. If you can ban those products from the house and use ones that would be unpalatable for her. Take out the playdough 1st and see if you can find a gf/cf alternative to make (salt dough i think it's called).

Does she eat all types of soap? If not which types of soap (texture wise) does she eat? Replace those with ones she wont eat as they are too hard or soft or smelly. By cream i presume you mean whipping or whipped cream, could you take that out the house as well.

Could you give her something that is the equivalent texture instead so she doesn't eat those substances?Also google " pica " (or maybe try this groups archives for it as that is the name of the behaviour your daughter is doing.

 

Also has anyone used Chlorella (a natural chelater) and if yes, is it good and how did it help.i would highly recommend against using Chlorella as a chelator. Is she on the gf/cf diet? Does this include non food items such as her playdough, soaps, cream?  What current biomedical interventions have you tried/are considering trying? i hope we can get you started.

-- is (who used to crave the smell of her BO pre diet).

[Guest guest]

First thing that jumps out to me, is you may be one of us who needs to shun high

oxalate foods-----this is rather new on the horizon, but giving great relief.

Check out group---Trying Low Oxalates.

What is his plan of treatment?? I'm an advocate for Dr. Teitlbaums

protocal---it gave me huge relief. Are you near any of the FFC's??

I for one would say get off all the drugs-------slowly.

God Bless,

Sara

>

> Hi there,

>

> My name is and I have been dealing with Fibromyalgia and related issues

> for 15+ years. I am 36 years old.

>

> Out of complete desperation I began to visit a pain management doctor in

> January. He has completed almost $10,000 in tests including extensive blood

> work.

>

> Last week he told me that I have a mycoplasmal blood infection that may be

> causing the inflammation as well as a myriad of other issues that I have been

> dealing with for years including irritable bowel, TMJ, UTIs, Interstitial

> cystitis, vaginal infections that are both yeast and bacterial, headaches,

> chronic fatigue symptoms, pelvic inflammatory disease and vulvodynia.

>

> He

> also did not give me the actual numbers on my blood work. In truth his bedside

> manner is really horrible. He condescends to me like I am 5 years old! But, as

> I said, I am desperate!

>

> So, I am just looking for feedback, advice and information. I am currently

taking Celebrex, Cymbalta, Soma, Nuerotin, Ambien and

> Soma.

>

> I would be happy to hear form anyone out there!

>

> Thanks!

>

>

[Guest guest]

Refined with Fire wrote:

> My name is and I have been dealing with Fibromyalgia and related issues

> for 15+ years. I am 36 years old.

> Last week he told me that I have a mycoplasmal blood infection that may be

> causing the inflammation as well as a myriad of other issues that I have been

> dealing with for years including irritable bowel, TMJ, UTIs, Interstitial

> cystitis, vaginal infections that are both yeast and bacterial, headaches,

> chronic fatigue symptoms, pelvic inflammatory disease and vulvodynia.

You obviously have a number of Tenth paradigm diseases. I would

strongly suggest you look into Dr. Pall's protocol. You can read

more at his website: http://thetenthparadigm.org

You're also welcome to join our group.

Your doctor sounds like a disrespectful money-hungry sucker.

> He

> also did not give me the actual numbers on my blood work. In truth his bedside

> manner is really horrible. He condescends to me like I am 5 years old! But, as

> I said, I am desperate!

You have a right to the results of your tests. You could file charges

against him with your state if he refuses to give you copies.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

@>----------<---------->-----------------------<----------<----------<@

MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida

[Guest guest]

Hi !

I am sorry you have been suffering with this for so long.

I don't have fibromyalgia, so I can't speak specifically to that, but

many of us with CFS have multiple systemic infections. It is one of

the characteristics of the illness. I've tested positive for

mycoplasma pneumonia, myself. Do you know if you turned up positive

for any other pathogens, such as Epstein-Barr Virus (EBV), HHV-6, or

cytomegalovirus?

The thing is, with CFS the underlying problem (probably, or usually)

isn't the pathogen specifically, but a disordered immune system that

is unable to keep these infections in check. The " aha! " moment for me

was 5 years ago when my blood tests came back positive for a whole

handful of pathogens, not just one. I looked at that and said, that's

an immune system problem. More recent lab tests through Dr

Klimas have verified that my immune system is out of whack.

You should not have to put up with a doctor that is condescending and

doesn't treat you with the respect you deserve. Having said that,

transitioning to a different doctor is not always easy if you can't

find a good one.

First, I'd suggest that you ask for copies of all your lab tests and

the current doctor's patient notes on you. If the office balks at

this, push back. You paid for all those tests and doctor visits, and

you have a right to have copies of that information for your own

files. Don't tell them you're thinking of changing doctors when you

request this, wait for that until you've got all the records in hand.

Then look for a doctor that specializes in fibromyalgia & ME/CFS.

Where are you located? Are you restricted to doctors covered by your

health insurance? With that information, people on this list might be

able to offer some suggestions.

In the meantime, you can also (if you haven't previously) look at diet

and food sensitivities. What kind of things do you eat? Have you tried

a gluten-free and/or casein-free (milk products) diet? That can often

help IBS. Do you take any probiotics? Etc.

You are fighting the good fight, hang in there.

Best wishes,

Marcia on

in Salem, Massachusetts

On Apr 26, 2011, at 12:33 PM, Refined with Fire wrote:

> Hi there,

>

> My name is and I have been dealing with Fibromyalgia and

> related issues

> for 15+ years. I am 36 years old.

>

> Out of complete desperation I began to visit a pain management

> doctor in

> January. He has completed almost $10,000 in tests including

> extensive blood

> work.

>

> Last week he told me that I have a mycoplasmal blood infection that

> may be

> causing the inflammation as well as a myriad of other issues that I

> have been

> dealing with for years including irritable bowel, TMJ, UTIs,

> Interstitial

> cystitis, vaginal infections that are both yeast and bacterial,

> headaches,

> chronic fatigue symptoms, pelvic inflammatory disease and vulvodynia.

>

> He

> also did not give me the actual numbers on my blood work. In truth

> his bedside

> manner is really horrible. He condescends to me like I am 5 years

> old! But, as

> I said, I am desperate!

>

> So, I am just looking for feedback, advice and information. I am

> currently taking Celebrex, Cymbalta, Soma, Nuerotin, Ambien and

> Soma.

>

> I would be happy to hear form anyone out there!

>

> Thanks!

>

>

>

>

[Guest guest]

: You are getting lots of good advice here. Read, read, read

everything you can get your hands on about CFS/FMS and educate yourself.

Doctors do NOT know everything or even something about our ailment. And

there are SO many variations. I have learned SO much from this website

from others and have shared what I know. You need to find out what works

for YOU, so don't be afraid to experiment. Most of us have gone through

MANY doctors and MANY supplements before we find what works for us (and

what dose) and then need to change some of them (I read somewhere an

average of 15 different doctors and 150 drugs/supplements).

Drugs? Sometimes you need a temporary fix or a backup plan which

includes drugs. Are the drugs helping you or making you worse (side

effects)? Evaluate constantly the use of drugs. Because of my

inflammation I have to take an anti-inflammatory drug regularly. I used

to take Vioxx (did well on it), then moved to Voltaren or generic

diclofenac (can't take Celebrex as I'm allergic to sulfa drugs). If I

don't take it, my neck seizes up and gets stiff. I was to the point that

6 ibuprofen wore off after 3-1/2 hours. If I am in bad pain I will take

250 mg of hydrocodone (vicodin) and 1/4 of a 350 mg tab of Soma. I tried

other muscle relaxants (flexeril, skelaxin) and they didn't work. I only

take a small portion or I am zonked out and can't work while a zombie. I

haven't tried Cymbalta but tried different anti-depressants (not for

depression but for body relaxants) but didn't feel good on any of them

and couldn't function. Most of us don't like the anti-depressants. We

are depressed because of our illness, not depressed because we have

clinical depression. The pain clinic can help you with drugs, but they

can also overprescribe for you.

Ambien works for my husband to sleep when he can't get to sleep any

other way 9then he has a hangover the next day though), but he can sleep

just as well with Xanax (a tranquilizer for his panic-anxiety) or even

melatonin (my preferred choice). Are you having sleep issues? Most of us

have this. I used to awaken every hour with hot flashes, etc. I am

post-menopausal now and am still on HRT (estrodial although my doc wants

to wean me off this as it's the cause of breast cancers and I'm still

getting one mild hot flash at night so don't want to get off this) and

prometrium/progesterone, which really helped me with sleep issues. My

original fibromyalgia doctor (Dr. Dantini, google him) from

Florida (I'm in CA) does phone consults and he prescribes melatonin for

sleep issues. It's been discussed here as some people do not react well

to melatonin and have depression issues, but I was told I could take up

to 10 mg nightly, I've heard he even goes up to 20 mg now with some

patients. I take the Natrol brand as it has added B6 and calcium. I use

3 mg nightly (it comes in various doses, 500 mcg to 5 mg, tabs and even

sublingual liquid) and within 20 minutes I am ready to sleep and sleep

through most of the night as long as I don't have a lot of muscle pain

to wake me up when I've been overactive. At first I was so sleep

deprived that I used 9 mg for 6 months, then 6 mgs for another 6 months,

then have been on 3 mg for years now. It took six months to catch up on

my sleep with melatonin and other remedies.

Dr. Dantini also tested me for viruses (I had six of them creating havoc

with my body and did a series with Valtrex, now available in generic

form which I tolerate). I took 1 gm Valtrex three times daily for over a

year, now just use it as a boost when I feel a virus coming on but

prefer to take lysine regularly to help with this. I have EBV in my

system which likes to reactivate (not contagious, just aggravating) and

I get swollen throat gland and arm glands. Evidently I had mono when I

was first in college but it wasn't diagnosed properly (yeah, probably

got it from kissing a couple of guys). I also have herpes simplex (cold

sores, which I get on my nose not my lips), HHV-6 and parvo. The Valtrex

really helped these.

I also have food allergies or sensitivities. Dr. Dantini re-tested me

for these (have had these since childhood). I do need to avoid a lot of

foods (wheat, corn, soy, rice, bananas, strawberries, grapes, cane

sugar, chicken, chicken eggs so no flu shots, etc.). When I am bad about

eating these foods, especially wheat, which is my downfall, I am more

achy and have more brain fog issues and lower energy.

Yes, yes, yes, get copies of your labs. Start a binder and keep these in

your binder so you know where they are. Take the binder when you go to

any doctors. Keep a sheet of paper in that you write down questions when

you think of them so you can remember them when you visit any doctor ~

you will forget the questions otherwise and it wastes money to go back.

Remember, you can agree to disagree with the doctor. Who knows your body

better? You do!!! Doctors are trained to treat the symptoms, often with

drugs, and not always look for the cause (which are many). Doctors are

not trained in supplements or nutrition, and many don't explore these

areas on their own. So many people are going to chiropractors or

physician assistants or nutritional therapists because they have

explored these other options. If the doctor doesn't work for you, just

say NEXT?!?! and move on. Don't buy into that they are gods and know

everything, they don't. If you don't want to try a drug, don't. My

current doctor makes recommendations and she knows I will do what I can

or want to. She works with me not against me. After you get your lab

tests (you have a legal right to them), is there another doctor in that

practice who is more patient friendly? Ask the receptionists who work

there, they know who is good and not.

I am SO sorry you are struggling at such a young age, it really puts a

damper on life. I hope you have some friends and/or family who are

supportive, cuz you really need support and understanding. My husband

gets it most of the time as he grew up with ill mother, father and

sister, but sometimes he forgets why I can't do stuff. My boss is

wonderful and allows me to work around my inability to do heavy work (I

cook at a high school cafeteria and the student workers get to do the

heavy stuff) but I am tired the more hours I work. Thank goodness for

homeleave breaks so I can rest up each time every other month.

Look into probiotics, they are essential for your yeast infection

issues. Experiment with different kinds and doses. You don't have to

take the most expensive or the refrigerated ones at the pharmacy

(expensive). There are many good brands out there, many you can find

locally at a health food store or even the grocery store (I like

Nature's Way Primadophillous). I used to like Schiff's but they changed

the formula and to a tab rather than a capsule and it doesn't work the

same. Yogurt isn't enough, plus it has a lot of sugar. Up your doses if

needed until you find what works. I find this so true with all my

supplements, I have to find the dose for me. In Prescription for

Nutritional Healing (an excellent book) it is suggested that those of us

with immune deficiency disorders need higher doses for our body, and I

find that true with me. I take a lot of stuff every day but feel better

when I do (and many doctors disagree with me, even some of the

chiropractors I've had who think you get what you need from your food,

not me). I love spirulina for energy (Klammath Falls kind for me),

Stress-B Complex from Twinlab (another favorite company), Natrol brand

Glucosamine/MSM/CMO for my joints, etc. Quercetin & vitamin C, beta

carotene for my allergies which are seasonal. Melatonin to sleep of

course. I make up little baggies of all my supplements for a couple of

weeks and then I don't have to try to remember what to take or open 20

or so bottles every time. I take them morning with food and evening with

food. Add things gradually so you can see how they work with your body.

Most things take 3-4 months to notice a difference, unless you have an

immediate bad reaction.

I found I had to go back on protein (I was a vegetarian for 15 years) as

my body was craving protein. I eat beef, turkey and salmon only as I am

careful what meats and how " clean " they are that I eat. I don't do well

with chicken although I do sometimes eat it when traveling as it's all

that's available. I don't do a lot of milk products as it causes sinus

congestion. With my other food allergies, eating is a challenge, so when

I cook, I cook larger portions and then freeze them to have on hand. I

do eat a lot of raw nuts, fruits and veggies. Look at the ingredients in

what you are eating ~ processed foods are killing us all!!! There are

over 200 ingredients in " spices " that are listed on a food item, so you

don't know what you are getting and most are harmful. Try to go as

natural as possible.

Are you working, full-time or part-time, a student? Pace yourself. Learn

to say NO and it will either get done by someone else or it isn't that

important. REST. I have a doctor's permission to nap (I love it, have

always been a napper). I used to be super-woman and tried to do it all.

And on a day when I feel good I have to remember not to overdo it cuz

then I'm worse. Sometimes you have to get things done, but I no longer

volunteer for extra things. If someone asks me, I either say get back to

me and I'll think about it, or if I can't decide I know the answer is NO

as it would overtax me. It's really okay to say NO. You don't have to go

into long explanations, maybe say you aren't able to take on anything

extra at this time and let it go.

Sorry for the book, but I wanted to share and let you know you aren't in

this alone. Praying for you to find some of your own answers.

in La Selva Beach CA (near Santa Cruz)

On 4/27/2011 8:36 AM, Marcia on wrote:

>

> Hi !

>

> I am sorry you have been suffering with this for so long.

>

> I don't have fibromyalgia, so I can't speak specifically to that, but

> many of us with CFS have multiple systemic infections. It is one of

> the characteristics of the illness. I've tested positive for

> mycoplasma pneumonia, myself. Do you know if you turned up positive

> for any other pathogens, such as Epstein-Barr Virus (EBV), HHV-6, or

> cytomegalovirus?

>

> The thing is, with CFS the underlying problem (probably, or usually)

> isn't the pathogen specifically, but a disordered immune system that

> is unable to keep these infections in check. The " aha! " moment for me

> was 5 years ago when my blood tests came back positive for a whole

> handful of pathogens, not just one. I looked at that and said, that's

> an immune system problem. More recent lab tests through Dr

> Klimas have verified that my immune system is out of whack.

>

> You should not have to put up with a doctor that is condescending and

> doesn't treat you with the respect you deserve. Having said that,

> transitioning to a different doctor is not always easy if you can't

> find a good one.

>

> First, I'd suggest that you ask for copies of all your lab tests and

> the current doctor's patient notes on you. If the office balks at

> this, push back. You paid for all those tests and doctor visits, and

> you have a right to have copies of that information for your own

> files. Don't tell them you're thinking of changing doctors when you

> request this, wait for that until you've got all the records in hand.

>

> Then look for a doctor that specializes in fibromyalgia & ME/CFS.

> Where are you located? Are you restricted to doctors covered by your

> health insurance? With that information, people on this list might be

> able to offer some suggestions.

>

> In the meantime, you can also (if you haven't previously) look at diet

> and food sensitivities. What kind of things do you eat? Have you tried

> a gluten-free and/or casein-free (milk products) diet? That can often

> help IBS. Do you take any probiotics? Etc.

>

> You are fighting the good fight, hang in there.

>

> Best wishes,

>

> Marcia on

> in Salem, Massachusetts

>

> On Apr 26, 2011, at 12:33 PM, Refined with Fire wrote:

>

> > Hi there,

> >

> > My name is and I have been dealing with Fibromyalgia and

> > related issues

> > for 15+ years. I am 36 years old.

> >

> > Out of complete desperation I began to visit a pain management

> > doctor in

> > January. He has completed almost $10,000 in tests including

> > extensive blood

> > work.

> >

> > Last week he told me that I have a mycoplasmal blood infection that

> > may be

> > causing the inflammation as well as a myriad of other issues that I

> > have been

> > dealing with for years including irritable bowel, TMJ, UTIs,

> > Interstitial

> > cystitis, vaginal infections that are both yeast and bacterial,

> > headaches,

> > chronic fatigue symptoms, pelvic inflammatory disease and vulvodynia.

> >

> > He

> > also did not give me the actual numbers on my blood work. In truth

> > his bedside

> > manner is really horrible. He condescends to me like I am 5 years

> > old! But, as

> > I said, I am desperate!

> >

> > So, I am just looking for feedback, advice and information. I am

> > currently taking Celebrex, Cymbalta, Soma, Nuerotin, Ambien and

> > Soma.

> >

> > I would be happy to hear form anyone out there!

> >

> > Thanks!

> >

> >

> >

> >

>

[Guest guest]

I'm new to the group and wanted to introduce myself. I'm so impressed with the information on the web site and with the comments shared by members. I've learned a lot already! I'm a 42 year old female living in Vermont and have been dealing with GI symptoms since I was 12. It was bothersome, but not limiting until I reached my early 20s when it became a daily struggle. After my third child was born (2001) I developed a Group A strep uterine infection which is uncommon. Treatment included several weeks of IV antibiotics then a variety of oral antibiotics for about 8 months. We all know how my GI tract reacted to all those antibiotics! To treat the GI symptoms my gastroenterologist put me on Prednisone - for 18 months! That killed my immune system and I started to get very sick all the time. Recurrent bronchitis, pneumonia that required hospitalization, my gums started to bleed, I developed odd acne-like cysts on my scalp, face, neck and breasts, lipomas started popping up around both ankles and I put on about 120 lbs. I'm self employed providing accounting & tax services so I'm fortunate to be able to work from home. I've kept up a 50+ hour work week despite the illnesses as I am the main provider for my family. In 2008, I felt I had exhausted everything traditional medicine had to offer and started to look at other options. I wish I had gone this route sooner! I began working with an acupuncturist who also practices traditional Chinese medicine. She's been amazing - and her suggestions have brought about much healing. I've visited a few naturopathic drs, but had not found one I trusted until recently. This new dr is attentive, intelligent, willing to discuss symptoms & ideas, and seems to actually care if his suggestions are helping. I like him and I trust him. Anyway, he has prescribed Iodoral which is why I joined this group. I'd like to learn more about it from people who are actually using it. I've done research online and understand how it works - but there's nothing better than communicating with other people going though similar treatment. BTW, he also wants me to start Low Dose Naltraxone. Is anyone using that along with iodine to work on thyroid/endocrine issues? I'm looking forward to learning more about each of you and, hopefully, sharing useful information. Thanks for reading.Brigitte

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