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Colleen,

Sorry to jump in on your post - where do you live?

Kerri from NY

's mom (DOCgrad)

--- In Plagiocephaly , " Colleen " <snuffy292002@y...>

wrote:

> Hi Rhonda,

>

> I know you live near CT,can you reccommend a MD who is band

friendly

> and uses Doc band.

>

> Thanks in Advance,

> Colleen

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  • 2 years later...
  • 7 months later...

Hi Colleen:

How scary! I truly do know what you are talking about

- we do get really used to just not feeling good, and

sometimes when I am having aches and pains like the

flu, I say oh it's just a flare, well, maybe one day

it won't be and I will miss the start of a flu and get

worse. Believe me, it has occurred to me that this

might happen. And I have asthma too, so bronchitis is

always a possibility, but since my lungs are pretty

much wheezy during the spring months anyway from

allergies, I kind of overlook that too. We really do

need to pay more attention to what our bodies are

really trying to tell us, and not blame it all on the

RA, fibro, OA, lupus, etc.

I have had bronchitis, and have been helped by Mucinex

- it can really get those lungs opened up, and create

a good productive cough getting the phlem and gunk

out. Ask your doctor about it - it's OTC - and really

works great.

I hope that you are feeling soon, and getting over

your illnesses. I guess the lesson here is that,

although we have RA, etc., that we are still human

beings that can come down with other illnesses too,

and simple things like a cold can blow up on us

because of our weakened immune systems, so we really

do have to stay on top of every sign of being sick,

even if it does just seem like a flare or just RA.

Thanks for your story - it has reminded me to take a

closer look at my asthma and any othere illness that

might come my way, and not just palm it off on the

usual. Take care - get better soon - prayers coming

your way -

Kathe in CA

__________________________________________________

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  • 1 year later...

Hi Colleen,

This is Steph in VA (although currently in Queens, NY for XMAS). I have had

RA for 8 years & been on Remicade for 7 years. While early literature

indicated that your body could develop antibodies after periods of stopping

drugs, I think it is now evaluated on a case by case basis. I have a friend with

RA that took Remicade for her RA and had to stop for several months due to wrist

surgery. She did go back on Remicade eventually. It didn't as well as it did

prior to stopping it but she said it was certainly better than not taking it. I

asked my rheumy about this -- specifically if I, by the grace of God, go into

remission when I'm pregnant I can stop the Remicade and I was concerned about

restarting it again in that case. My rheumy said that if I felt well enough it

would be up to me to take that risk, Honestly, I am completely into the idea of

stopping my meds for any amount of time as long as I would be comfortable. Hey,

I'd even pay money to go a month w/o meds

but who among us wouldn't if we could still feel well (I'd even settle for

feeling okay!!!)

So, it isn't really an answer to your question but I hope it helps. Happy

Holidays.

Take care everyone!!

Steph in VA (temporarily NYC)

I do have a question about the biological immune suppressants which I believe

are Remicade and Humira. I have been on Humira for almost 4 years and because of

a new program that Enbrel had, I switched to Enbrel to see if it wouldn't do

more to help my joint pain and fatigue. I also have an auto immune colitis so I

am on another computer group for that. It has come up on that site that if a

person goes off of Remicade or Humira that they can develop antibodies so that

if they go back on either of those immune suppressants, they are ineffective

because the antibodiies block them. I am concerned about this as I am currently

on Enbrel as a trial and I think there is a good chance I will want to return to

Humira. Does anyone know or have heard anything like this about this? The person

who brought this up felt the longest a person could go without Remicade or

Humira was 14 weeks, after that they would be ineffective.

Merry Christmas to All, Colleen

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The 2007 Charlottesville Arthritis Walk was a success!

We raised just over $30,000 for research & programs for people with arthritis!

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

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

Never miss a thing. Make your homepage.

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  • 4 weeks later...

Yvette,

For yeast detox we used homeopathic drops. No sugar. I do everything under a

supervision of MD and most effectively the homeopathic DAN! doc. Charile is

mildly apraxic/dyspraxic; however, riddled with aluminum.

Hope this helps,

Colleen

[ ] Colleen

Hi Colleen,

Would you please tell me what you used for treatment of yeast that worked so

well for your ds?

Thanks so much.

Yvette

[ ] Group Meeting Results/DAN

Info.

> > >

> > >

> > >

> > > Went to the group meeting in my town tonight. My town is 1/4

> square

> > > mile, Mayberry, everyone knows everyone elses beeswax so we

> signed

> > > confidentiality agreements but are allowed to do what I am

doing

> > now

> > > so long as we say, " Someone in my group. "

> > >

> > > The group is made up of parents of the following types of

kids

> but

> > > not all have just speech issues and one, the only one

exposed to

> > > fluoride in large doses, is diagnosed with dyspraxia.

> > >

> > > 1) PDD Nos, sensory issues pretty severe.

> > > 2) Nonverbal, PDD Nos, older sibling possible Aspergers.

Going to

> > > Neubrander, slightly leary about him.

> > > 3) Me, with one kid with shiners and, off GFCF diet she is

> whiney,

> > > has focus issues, food strikes and less unprovoked speech.

The

> > other

> > > kid is undiagnosed but had signs of apraxia and ASD. Low

tone,

> > > initial trouble producing speech, poor receptive, fine and

gross

> > > motor issues. Those things improved and some resolved on

GFCF

> diet

> > > and removal of bad water. Articulation issues pend.

> > >

> > > The mom of the sensory kid went GFCF in Sept and has seen

major

> > > changes. She went to a DAN (A PhD not MD), Dr. King who

operates

> in

> > > conjunction with an MD, Dr. Podell, in Springfield, NJ. The

mom

> is

> > > healing the kid on diet but wanted to know where the kids

gut was

> > at,

> > > if she was getting the right vitamins and minerals, using

the

> right

> > > probiotic, etc. She was not interested in chelation. She

also

> > wanted

> > > alternative remedies to things that have plagued her kid in

the

> > past,

> > > like ear stuff.

> > >

> > > She did poop and pee tests via Drs Data and vitamin

measurements

> > via

> > > Bioreference. She also did an IGE test. What she discovered

was

> > that

> > > milk and wheat are an issue and some other things as well,

mostly

> > she

> > > realized but a few, like soy and rice, must leave the diet.

The

> > > metals testing showed the worst of her stuff was actually,

at

> this

> > > point " high normal. " The two big things that need addressing

were

> > > aluminum and nickel. Neither are a surprise. We live in a

town

> > where

> > > aluminum frame windows are made and then there are the

vaccines.

> > > Several industries have operated in this town so nickel is

also

> not

> > a

> > > surprise.

> > >

> > > The interesting thing was the poop test and what it told her

> about

> > > what the kid was and was not getting from the current

probiotic

> and

> > > how to address it as well as a panel showing bacterial

> > > susceptibilities and natural agents that could be used to

address

> > > these.

> > >

> > > Despite giving calmag every day the kid is low in calcium.

> > >

> > > So for $500 for the first visit, $350 paid by insurance, and

> > another

> > > $1500 for poop, pee, minerals, vitamin and bacterial

> susceptibility

> > > tests and IGG food sensitivity testing and maybe some more

for a

> > > second visit this woman has a blueprint to treat her child.

A new

> > > probiotic was ordered, she is starting CLO, flax seed and

some

> > other

> > > stuff tailored to her child.

> > >

> > > So here I sit, one month shy of my son's EI age out date.

There

> are

> > > no preschools to take him because I waited. The town

preschool

> that

> > I

> > > waived because I thought they would not abide by diet, is

> actually

> > > asking the parents I was sitting with to present the GFCF

diet to

> > the

> > > school parents as it has helped NT siblings with behavioral

stuff

> > and

> > > parents. I can get him in there in 2 months. After what I

have

> seen

> > > in that meeting, where AP kids go GFCF and there problems

leave

> > > whereas my kid has aticulation stuff makes me wonder if what

is

> > left

> > > in my guy is fluoride and lead. I need the testing. I see

that

> now.

> > > None of these tests seem to address fluoride which concerns

me. I

> > > will test the baby water though. At least I'll have a gauge

of

> what

> > > went in. I need to know the minerals, the vitamins, the

flora

> info.

> > > and the remedies. This is the testing we should be able to

get

> when

> > > we go to a mainstream dr. with a child with delays. I am

scared.

> I

> > am

> > > mad. This should not have taken this long.

> > >

> > > Hubby is on board. We are behind the 8 ball now and it is

time to

> > > catch up. Janice was right. You have to do it all:

> > >

> > > The therapy

> > > The diet/vitamin and mineral regimen

> > > and

> > > the DAN testing

> > >

> > > You have to know what is in front of you and how to fix it.

My

> DAN

> > > knows the tests. Beyond that I don't know if he can give me

a

> > > blueprint like this woman got or if hers is even correct.

What I

> do

> > > know is I need the tests and I trust my own instincts to

find

> > someone

> > > knowledgable and trustworthy to help me find a map from

there.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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