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welcome Sharon,Lori here! I am pleased to meet you! I am rather new here too!

But I AM learning to care for me!

Amazing day

From: loop92 <sharon.hill@...>

Subject: new

weightloss

Date: Saturday, November 7, 2009, 7:03 PM

 

I am just beginning the podcasts. I want to complete the exercises and get

to the bottom of my emotional eating, comfort eating. I am searching for health.

I am a 39 year old mother of teenagers and I know its time to take care of

myself.

Sharon

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Hi Sharon,

Welcome! I'm also interested in paying attention to the emotional eating, and

amy bringing my awareness to that issue. I would love to communicate with you

--and the whole group --about this issue. Let's touch base on this in the

coming weeks. The holidays are upon us!

In addition I'm having a lot of big changes both with my job and with my

parents' health. It's nice to know we have the support of the group, here. And

that we can use these emotional situations as lessons and opportunities for

changing our patterns. (It sounds so cliché, but it's true.)

Good luck on the journey. The podcasts are fantastic!

>

> I am just beginning the podcasts. I want to complete the exercises and get to

the bottom of my emotional eating, comfort eating. I am searching for health. I

am a 39 year old mother of teenagers and I know its time to take care of myself.

> Sharon

>

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  • 3 weeks later...

Hi, --welcome! I don't know if this was answered yet but you can find out what your state laws are regarding vaccines from NVIC: (http://www.nvic.org/vaccine-laws.aspx).

I also vaccinated my oldest two children when they were younger, as have a lot of people here so you are not alone in that. It is never too late to question them and never too late to use an exemption. It does not matter if you vaccinated before, only if you vaccinate after submitting the form. I've used them for various private and public schools, camps, and college, too. No problems.

Glad to have you on board!

Winnie NewVaccinations > Hello,> > I'm , mother of two, 12 year old son and 7 year old > daughter. I found this group while searching for a > list on hypotonia, which my son has been diagnosed with. My > children have had all vaccinations listed as required for school > so far, and have each had one or two flu shots over the years. > I have been growing skeptical of vaccines since the chicken pox > shot came out. My daughter had the shot, after I agonized about > it and gave in, only because school was threatening discharge if > she didn't get it. As the list of vaccines required for school > keeps growing, I want to learn as much possible to keep my kids > safe from harm from over vaccination. I am interested in how to > legally refuse vaccines while keeping my kids in school. I > admire all of you who have managed to avoid vaccines and only > wish I had known to do the same for my children. > > > >

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  • 3 months later...
Guest guest

Hi  Dee,

 

Welcome to the group, my name is Sue Petrelli and I have an 18yr old daughter

with CVID.

My daughter was officially dx around the age of 12. She first went on IVIG and

now for about 2 years has been on sub-q. She loves being on sub-q and loves the

fact that we don't have to drive down to the Childrens hospital anymore-or have

a nurse coming to the house anymore,  she enjoys the freedom that sub-q has

given to her.

The Immune Deficiency Foundation has information and publications for you

which are free- the discussion forum is a great place to ask questions and get

support and encouragement.

There is also a magazine called IG living that is free and you may want to

subscibe to it.

 

In terms of sub-q we have seen a remarkable difference in  the stability of our

daughters IGG levels.  Our daughter has had a much better experience on

 sub-q. When she was on IVIG, her infusions would take 6-8 hours, she would

have to be pre-medicated with solemedrol, benadryl and advil. Even with all the

pre-meds she still got horrible migranes and flu-like symptoms for 2-3 days

after each infusion. With sub-q, she does not have to pre-medicate at all, she

never gets the headaches or flu like symptoms from the treatment and her

treatment takes about 3-4 hours. She has mobility while she infuses ( which she

loves) and she does the treatment by herself so we feel it helps her to feel she

has some control over having this disease.

Sub-q is not for everyone- some members of the group have expressed that they

don't want a weekly reminder that they have this disease, but others like our

daughter love it.

It is a personal  and medical decision for your son in terms of what works best

for him.

As far as this disease consuming you as a parent- I think we all can get that- I

remember for about the first 2 years I spent many nights up until about 2 in the

morning researching and trying to learn as much as I could about this disease.

Sometimes I was grateful because I realized that this disease is treatable and

other times I was scared out of my pants not knowing what the future would bring

for my daughter. My daughter has been very isolated as well- she was not

home-schooled but evern being in school she was isolated-she missed approx 7

weeks of school each year due to incredible fatigue and constant flu-like

symptoms and endless doctor visits from one specialist to another. It did get

better-

but it was always hard for us as parents to know how much to push her because

we were never quit sure if she was fatigued  and depressed because she did not

want to deal with struggles of school or if it was from her immune deficiency.

She has been treated for depression and has had an IEP for learning

disabilities. I think it is important for us as parents to try to encourage our

kids to be involved in some form of social activites to help them to develop the

necessary social skills that they will need later in life. The IDF is also a

good resource for this- your son may be able to build his social skills by

meeting with other kids who have immune deficiency. It might be good for him to

see that other kids his age are going thru the same thing-the IDF also offers

family retreats and conferences which are good opportunities for him and you to

met others who live with immune deficiency.

The best advice I can offer as a parent is to take one day at a time and to talk

with others so you don't get consumed by the " what if's " with this disease.

hang in there

Sue Petrelli

mom to w CVID

From: kaizach2 <kaizach2@...>

Subject: New

Date: Monday, March 15, 2010, 2:09 PM

 

We are new to the group. My son Zach is 11yrs old and has been diagnosed with

CVID. He started out on Sub-Q but unfortunately will be getting a port. We are a

bit concerned about this and are trying to get as much information regarding the

difference. It has been very difficult for all, with endless doctor appointments

and hospital stays. We are not sure how to deal with everything or how to help

Zach through this craziness. Zach has missed out on so much. He has been home

schooled for almost four year and has missed out on just being a kid. We feel

helpless and I have this overwhelming feeling of guilt. My life is consumed by

this. I don't know how to relax anymore. I live in fear of losing my son.

Looking for help,

Dee

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Hi  Dee,

 

Welcome to the group, my name is Sue Petrelli and I have an 18yr old daughter

with CVID.

My daughter was officially dx around the age of 12. She first went on IVIG and

now for about 2 years has been on sub-q. She loves being on sub-q and loves the

fact that we don't have to drive down to the Childrens hospital anymore-or have

a nurse coming to the house anymore,  she enjoys the freedom that sub-q has

given to her.

The Immune Deficiency Foundation has information and publications for you

which are free- the discussion forum is a great place to ask questions and get

support and encouragement.

There is also a magazine called IG living that is free and you may want to

subscibe to it.

 

In terms of sub-q we have seen a remarkable difference in  the stability of our

daughters IGG levels.  Our daughter has had a much better experience on

 sub-q. When she was on IVIG, her infusions would take 6-8 hours, she would

have to be pre-medicated with solemedrol, benadryl and advil. Even with all the

pre-meds she still got horrible migranes and flu-like symptoms for 2-3 days

after each infusion. With sub-q, she does not have to pre-medicate at all, she

never gets the headaches or flu like symptoms from the treatment and her

treatment takes about 3-4 hours. She has mobility while she infuses ( which she

loves) and she does the treatment by herself so we feel it helps her to feel she

has some control over having this disease.

Sub-q is not for everyone- some members of the group have expressed that they

don't want a weekly reminder that they have this disease, but others like our

daughter love it.

It is a personal  and medical decision for your son in terms of what works best

for him.

As far as this disease consuming you as a parent- I think we all can get that- I

remember for about the first 2 years I spent many nights up until about 2 in the

morning researching and trying to learn as much as I could about this disease.

Sometimes I was grateful because I realized that this disease is treatable and

other times I was scared out of my pants not knowing what the future would bring

for my daughter. My daughter has been very isolated as well- she was not

home-schooled but evern being in school she was isolated-she missed approx 7

weeks of school each year due to incredible fatigue and constant flu-like

symptoms and endless doctor visits from one specialist to another. It did get

better-

but it was always hard for us as parents to know how much to push her because

we were never quit sure if she was fatigued  and depressed because she did not

want to deal with struggles of school or if it was from her immune deficiency.

She has been treated for depression and has had an IEP for learning

disabilities. I think it is important for us as parents to try to encourage our

kids to be involved in some form of social activites to help them to develop the

necessary social skills that they will need later in life. The IDF is also a

good resource for this- your son may be able to build his social skills by

meeting with other kids who have immune deficiency. It might be good for him to

see that other kids his age are going thru the same thing-the IDF also offers

family retreats and conferences which are good opportunities for him and you to

met others who live with immune deficiency.

The best advice I can offer as a parent is to take one day at a time and to talk

with others so you don't get consumed by the " what if's " with this disease.

hang in there

Sue Petrelli

mom to w CVID

From: kaizach2 <kaizach2@...>

Subject: New

Date: Monday, March 15, 2010, 2:09 PM

 

We are new to the group. My son Zach is 11yrs old and has been diagnosed with

CVID. He started out on Sub-Q but unfortunately will be getting a port. We are a

bit concerned about this and are trying to get as much information regarding the

difference. It has been very difficult for all, with endless doctor appointments

and hospital stays. We are not sure how to deal with everything or how to help

Zach through this craziness. Zach has missed out on so much. He has been home

schooled for almost four year and has missed out on just being a kid. We feel

helpless and I have this overwhelming feeling of guilt. My life is consumed by

this. I don't know how to relax anymore. I live in fear of losing my son.

Looking for help,

Dee

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  • 4 weeks later...
Guest guest

Coat under your breast with bag balm sulfur or vaseline sulfur, also use MMS1 if

you wish externally spray and or bathe or both. I have also made a lye lotion

and added sulfur. These creatures love the hairline and under the breast For

laundry try fels naptha and borax. This has helped me tremendously.

http://www.amazon.com/Vermonts-Original-Bag-Balm-Protective/dp/B0012HR4NQ

http://www.jimhumble.biz/biz-skin.htm

http://mms4life.wordpress.com/mms-protocolactivation/mms-method-for-bathsoak/

http://jimhumble.biz/

http://www.soapsgonebuy.com/

LYE SOAP LOTION - HOW TO MAKE IT ( same process to make shampoo, dish soap and

plant spray as well )

To make a lotion out of the soap it is really very easy. In fact it is a good

way to recycle those small pieces left over from the shower. To make the lotion

just take several small pieces and mix them with water. We recommend you use

either a spring water or a distilled water. Something that has the impurities

removed. Especially if your using the lotion for a skin allergy or something of

the like. They put so many things in city water any more you don't know what you

may be mixing into your lotion thus maybe even irritating your condition

further. Also you may need to add a little heat when trying to get the soap and

water mix if the pieces are really hard. Not much heat just a bit. Anyway just

mix in enough water and stir it until you get the consistency you want for your

lotion or dish soap or shampoo, whatever it is your making the mix for. Now be

sure to put your mix into something relatively air tight so it won't dry right

back out. If you need to take it with you in your purse or something just get a

small squeeze bottle or a zip lock bag that your sure won't leak. We have also

been told if you thin down the solution enough you can use it as a plant spray

to keep unwanted bugs away from your plants.

>

> Hi everyone,

>

> I just wanted to say hi and I'm new to the forum. I joined a couple of weeks

ago but I've been doing reading when I have the chance. I don't suffer from

birdmites but I suffer from the walking dandruff mite. I always forget the

correct name. It happened at the end of January when I took in a stray kitten.

I already had four cats in the house. I took the kitten to the vet the same

day, got medicine and quarantined him from the other cats. I kept him in the

living room and had no idea he was infested with mites. Live and learn!

>

> A week or so later, I was sitting on the couch and got a bite. It stung like

crazy. The bites kept happening. I went through the regular routine, fleas,

bed bugs, had two pest control companies out. There were no bed bugs or fleas.

I went to regular dr, got some prednisone and cream. That didn't help much.

Went back a couple of weeks later, got a different cream and an appointment with

a derm. Well that was useless, skin biopsy came back as insect bite. Got

another rx for another steroid cream. I didn't get this one filled.

>

> Then I came across the topix forum and this forum as well. I had to give up

my cats a couple of weeks ago. It was just too much for me. Things are slowly

getting better. I do lots of laundry, cleaning, and decluttering on a daily

basis. I have started spraying with cyonara/nylar in the house and vehicles.

I've done that twice now. I also use boric acid in different places. I've

adapted a pretty good laundry system thanks to the suggestions of others.

>

> I still have some on me but the bites are getting less and less. I just did

three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture

and that's been a big help. I noticed these things seem to like my scalp. I

had the sulfur on my scalp for three days and it has made a difference. They

also seem to like my breast area. Are there any suggestions on what I can do to

get rid of them there? I do take weekly doses of oral iver, three so far.

Thanks.

>

> Michele

>

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Guest guest

Hi Michele,

Unfortunately, what you are describing sounds like birdmites. Have you gotten

them properly identified? From what I remember on dandruff mites, they don't

bite, they just feed on skin. Do you have like two different kinds of bites?

Hard red ones that don't itch that take forever to go away or really itchy ones

that heal fast?

-

>

> Hi everyone,

>

> I just wanted to say hi and I'm new to the forum. I joined a couple of weeks

ago but I've been doing reading when I have the chance. I don't suffer from

birdmites but I suffer from the walking dandruff mite. I always forget the

correct name. It happened at the end of January when I took in a stray kitten.

I already had four cats in the house. I took the kitten to the vet the same

day, got medicine and quarantined him from the other cats. I kept him in the

living room and had no idea he was infested with mites. Live and learn!

>

> A week or so later, I was sitting on the couch and got a bite. It stung like

crazy. The bites kept happening. I went through the regular routine, fleas,

bed bugs, had two pest control companies out. There were no bed bugs or fleas.

I went to regular dr, got some prednisone and cream. That didn't help much.

Went back a couple of weeks later, got a different cream and an appointment with

a derm. Well that was useless, skin biopsy came back as insect bite. Got

another rx for another steroid cream. I didn't get this one filled.

>

> Then I came across the topix forum and this forum as well. I had to give up

my cats a couple of weeks ago. It was just too much for me. Things are slowly

getting better. I do lots of laundry, cleaning, and decluttering on a daily

basis. I have started spraying with cyonara/nylar in the house and vehicles.

I've done that twice now. I also use boric acid in different places. I've

adapted a pretty good laundry system thanks to the suggestions of others.

>

> I still have some on me but the bites are getting less and less. I just did

three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture

and that's been a big help. I noticed these things seem to like my scalp. I

had the sulfur on my scalp for three days and it has made a difference. They

also seem to like my breast area. Are there any suggestions on what I can do to

get rid of them there? I do take weekly doses of oral iver, three so far.

Thanks.

>

> Michele

>

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Guest guest

I have some that itch and some that don't. It was identified through a sample at my vet when I took one of my cat's to her. The walking dandruff can bite and I've done research on the net about it as well. I have some that have taken awhile to heal but they are getting better with the hydro/borax mixture I've been using.

From: danielwalker94949 <danielwalker94949@...>Subject: Re: Newbird mites Date: Friday, April 9, 2010, 2:53 PM

Hi Michele,Unfortunately, what you are describing sounds like birdmites. Have you gotten them properly identified? From what I remember on dandruff mites, they don't bite, they just feed on skin. Do you have like two different kinds of bites? Hard red ones that don't itch that take forever to go away or really itchy ones that heal fast?- >> Hi everyone,> > I just wanted to say hi and I'm new to the forum. I joined a couple of weeks ago but I've been doing reading when I have the chance. I don't suffer from birdmites but I suffer from the walking dandruff mite. I always forget the correct name. It happened at the end of January when I took in a stray

kitten. I already had four cats in the house. I took the kitten to the vet the same day, got medicine and quarantined him from the other cats. I kept him in the living room and had no idea he was infested with mites. Live and learn!> > A week or so later, I was sitting on the couch and got a bite. It stung like crazy. The bites kept happening. I went through the regular routine, fleas, bed bugs, had two pest control companies out. There were no bed bugs or fleas. I went to regular dr, got some prednisone and cream. That didn't help much. Went back a couple of weeks later, got a different cream and an appointment with a derm. Well that was useless, skin biopsy came back as insect bite. Got another rx for another steroid cream. I didn't get this one filled.> > Then I came across the topix forum and this forum as well. I had to give up my cats a couple of weeks ago. It was just too much for me. Things are slowly getting better.

I do lots of laundry, cleaning, and decluttering on a daily basis. I have started spraying with cyonara/nylar in the house and vehicles. I've done that twice now. I also use boric acid in different places. I've adapted a pretty good laundry system thanks to the suggestions of others.> > I still have some on me but the bites are getting less and less. I just did three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture and that's been a big help. I noticed these things seem to like my scalp. I had the sulfur on my scalp for three days and it has made a difference. They also seem to like my breast area. Are there any suggestions on what I can do to get rid of them there? I do take weekly doses of oral iver, three so far. Thanks.> > Michele>

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Hi Lynn,

Thanks for the welcome. No, I didn't have any intestinal problems before we took in the kitten. I noticed after the mites I had somewhat but I started on probiotics and that seems to be helping.

From: Lynn <torpedolynn@...>Subject: Re: Newbird mites Date: Friday, April 9, 2010, 2:01 PM

Sorry about your situation. Hopefully you can get rid of them. If you get to sick from all the chemicals I can help put you torward the natural supplies. Have you had any intestinal problems before the kitten brought you the mites?? In Light Lynn>> Hi everyone,> > I just wanted to say hi and I'm new to the forum. I joined a couple of weeks ago but I've been doing reading when I have the chance. I don't suffer from birdmites but I suffer from the walking dandruff mite. I always forget the correct name. It happened at the end of January when I took in a stray kitten. I already had four cats in the house. I took the kitten to the vet the same day, got medicine and

quarantined him from the other cats. I kept him in the living room and had no idea he was infested with mites. Live and learn!> > A week or so later, I was sitting on the couch and got a bite. It stung like crazy. The bites kept happening. I went through the regular routine, fleas, bed bugs, had two pest control companies out. There were no bed bugs or fleas. I went to regular dr, got some prednisone and cream. That didn't help much. Went back a couple of weeks later, got a different cream and an appointment with a derm. Well that was useless, skin biopsy came back as insect bite. Got another rx for another steroid cream. I didn't get this one filled.> > Then I came across the topix forum and this forum as well. I had to give up my cats a couple of weeks ago. It was just too much for me. Things are slowly getting better. I do lots of laundry, cleaning, and decluttering on a daily basis. I have started spraying with

cyonara/nylar in the house and vehicles. I've done that twice now. I also use boric acid in different places. I've adapted a pretty good laundry system thanks to the suggestions of others.> > I still have some on me but the bites are getting less and less. I just did three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture and that's been a big help. I noticed these things seem to like my scalp. I had the sulfur on my scalp for three days and it has made a difference. They also seem to like my breast area. Are there any suggestions on what I can do to get rid of them there? I do take weekly doses of oral iver, three so far. Thanks.> > Michele>

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Guest guest

My heart goes out to you. It sounds like you are doing all the right things if

this is Cheyletiella you are suffering from. DId you see the mites? They look

like pieces of white skin flakes, but they move. The Ivermectin takes several

weeks perhaps to work completely as they reinfest from the environment once the

cat is gone. Supposedly they cannot reproduce on you and don't live more than a

couple months, so this should be over for you in a couple months tops if it is

straight forward cheyletiella.

If I were you and if it is cheyletiella, I would vacuum and steam clean

everything and scrub all surfaces with orange plus. I would wash all bedding and

laundry in hot water with BioKleen with enzymes and also scrub yourself in the

shower at night with a tea tree soap before bed and put 2-sides tape around your

bed if needed. Are they biting you all the time? Mostly at night? Mostly in a

certain place in your house?

Many of us on this website are suffering from various types of bird mites which

can live in the environment for years and years and can even adapt to live

happily on humans.

However, some of us are suffering from some sort of disease that is extremely

poorly understood which was perhaps caused by mite bites or other bites. This

disease (or various diseases) may be related to genetically modified

mycobacterium or some other kind of GMO organisms which may have infected us

when we got bit by infested pests. In any case, something may be in our bodies

now (thanks to the bites) which has caused us to have what appear to be

constantly new bites (which are slow to heal) from an invisible source (long

after no more bird mites are found anymore) and also causes us to have crawling,

prickling sensations for months/years on and on and on. It is like a terrible

science fiction.

So, I am hoping you have the straight-forward kind of misery which comes from a

mite such as Cheyletiella and that you will be rid of it with the use of

Ivermectin and thorough deep cleaning until you have no more bites after just a

couple months at the most.

If this does get more complicated for you, it appears that some people on this

website have been helped with various protocols from the Herbal Healer McCain's

3-point plan, and/or the use of IR saunas, and/or the use of products and

protocols from Dr. Staninger and/or from the products and protocols of ESP

Botanicals. Others have been helped by the use of MMS or boric acid or

pesticides... But you hav eto be careful not to cause yourself harm.

It is clear that we don't all have exactly the same thing on this website

because not all solutions work for everyone in the same way. I am have learned

the hard way that there is very great truth in the saying, 'First do no harm'.

Z3

> >

> > Hi everyone,

> >

> > I just wanted to say hi and I'm new to the forum. I joined a couple of

weeks ago but I've been doing reading when I have the chance. I don't suffer

from birdmites but I suffer from the walking dandruff mite. I always forget the

correct name. It happened at the end of January when I took in a stray kitten.

I already had four cats in the house. I took the kitten to the vet the same

day, got medicine and quarantined him from the other cats. I kept him in the

living room and had no idea he was infested with mites. Live and learn!

> >

> > A week or so later, I was sitting on the couch and got a bite. It stung

like crazy. The bites kept happening. I went through the regular routine,

fleas, bed bugs, had two pest control companies out. There were no bed bugs or

fleas. I went to regular dr, got some prednisone and cream. That didn't help

much. Went back a couple of weeks later, got a different cream and an

appointment with a derm. Well that was useless, skin biopsy came back as insect

bite. Got another rx for another steroid cream. I didn't get this one filled.

> >

> > Then I came across the topix forum and this forum as well. I had to give up

my cats a couple of weeks ago. It was just too much for me. Things are slowly

getting better. I do lots of laundry, cleaning, and decluttering on a daily

basis. I have started spraying with cyonara/nylar in the house and vehicles.

I've done that twice now. I also use boric acid in different places. I've

adapted a pretty good laundry system thanks to the suggestions of others.

> >

> > I still have some on me but the bites are getting less and less. I just did

three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture

and that's been a big help. I noticed these things seem to like my scalp. I

had the sulfur on my scalp for three days and it has made a difference. They

also seem to like my breast area. Are there any suggestions on what I can do to

get rid of them there? I do take weekly doses of oral iver, three so far.

Thanks.

> >

> > Michele

> >

>

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Guest guest

Very well stated Z3. I agree with 100% of what you said. Re: New

My heart goes out to you. It sounds like you are doing all the right things if this is Cheyletiella you are suffering from. DId you see the mites? They look like pieces of white skin flakes, but they move. The Ivermectin takes several weeks perhaps to work completely as they reinfest from the environment once the cat is gone. Supposedly they cannot reproduce on you and don't live more than a couple months, so this should be over for you in a couple months tops if it is straight forward cheyletiella.If I were you and if it is cheyletiella, I would vacuum and steam clean everything and scrub all surfaces with orange plus. I would wash all bedding and laundry in hot water with BioKleen with enzymes and also scrub yourself in the shower at night with a tea tree soap before bed and put 2-sides tape around your bed if needed. Are they biting you all the time? Mostly at night? Mostly in a certain place in your house? Many of us on this website are suffering from various types of bird mites which can live in the environment for years and years and can even adapt to live happily on humans. However, some of us are suffering from some sort of disease that is extremely poorly understood which was perhaps caused by mite bites or other bites. This disease (or various diseases) may be related to genetically modified mycobacterium or some other kind of GMO organisms which may have infected us when we got bit by infested pests. In any case, something may be in our bodies now (thanks to the bites) which has caused us to have what appear to be constantly new bites (which are slow to heal) from an invisible source (long after no more bird mites are found anymore) and also causes us to have crawling, prickling sensations for months/years on and on and on. It is like a terrible science fiction. So, I am hoping you have the straight-forward kind of misery which comes from a mite such as Cheyletiella and that you will be rid of it with the use of Ivermectin and thorough deep cleaning until you have no more bites after just a couple months at the most.If this does get more complicated for you, it appears that some people on this website have been helped with various protocols from the Herbal Healer McCain's 3-point plan, and/or the use of IR saunas, and/or the use of products and protocols from Dr. Staninger and/or from the products and protocols of ESP Botanicals. Others have been helped by the use of MMS or boric acid or pesticides... But you hav eto be careful not to cause yourself harm.It is clear that we don't all have exactly the same thing on this website because not all solutions work for everyone in the same way. I am have learned the hard way that there is very great truth in the saying, 'First do no harm'.Z3> >> > Hi everyone,> > > > I just wanted to say hi and I'm new to the forum. I joined a couple of weeks ago but I've been doing reading when I have the chance. I don't suffer from birdmites but I suffer from the walking dandruff mite. I always forget the correct name. It happened at the end of January when I took in a stray kitten. I already had four cats in the house. I took the kitten to the vet the same day, got medicine and quarantined him from the other cats. I kept him in the living room and had no idea he was infested with mites. Live and learn!> > > > A week or so later, I was sitting on the couch and got a bite. It stung like crazy. The bites kept happening. I went through the regular routine, fleas, bed bugs, had two pest control companies out. There were no bed bugs or fleas. I went to regular dr, got some prednisone and cream. That didn't help much. Went back a couple of weeks later, got a different cream and an appointment with a derm. Well that was useless, skin biopsy came back as insect bite. Got another rx for another steroid cream. I didn't get this one filled.> > > > Then I came across the topix forum and this forum as well. I had to give up my cats a couple of weeks ago. It was just too much for me. Things are slowly getting better. I do lots of laundry, cleaning, and decluttering on a daily basis. I have started spraying with cyonara/nylar in the house and vehicles. I've done that twice now. I also use boric acid in different places. I've adapted a pretty good laundry system thanks to the suggestions of others.> > > > I still have some on me but the bites are getting less and less. I just did three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture and that's been a big help. I noticed these things seem to like my scalp. I had the sulfur on my scalp for three days and it has made a difference. They also seem to like my breast area. Are there any suggestions on what I can do to get rid of them there? I do take weekly doses of oral iver, three so far. Thanks.> > > > Michele> >>

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Hi Z3,

Great advice! Thanks! I am not getting bit in bed. I notice random bites from time to time but make note of what I'm wearing and where I was at. The environment is coming along better. I think one of my biggest problems is my scalp. They seem to reproduce there but I'm doing some good scalp treatments. I also notice my hands and feet are big areas too. I wear vinyl gloves when I clean most of the time. I keep the gloves clean and change them often. Some days it is just too hot to wear them so I make sure I wash my hands a lot.

I have been trying some new internal stuff that has been helping, different vitamins and supplements. I've been cutting back on sugar and caffeine. A friend from another forum suggested I change clothes often which has been a big help. I also wash off at this time, not necessarily a shower. Sometimes I use wet ones and sometimes I use a hot wash rag, rinsed often with antibacterial soap. Could I be spreading them on to different areas of my body by using the wash rag? I was starting to wonder about that today.

The iver has been a great help getting them out of my ears, nose & eyes. I will continue with this once a week for a couple of more weeks. I really don't get the creepy crawlies anymore but I noticed the vibrations in different parts of my body. I've been paying special attention to those areas. I woke up last night feeling the vibrations so I coated myself with vaseline and went to sleep. I find heavier moisturizers seem to help at night. Any suggestions about hand, hair or feet treatments would be greatly appreciated.

I also use a backbrush in the shower but I soak it after each use and then spray straight alcohol on it. Is that enough? Same thing with my razor. I've been buying disposable razors and just using them a few times.

Thanks,

Michele

From: Goldstein@... <Goldstein@...>Subject: Re: Re: Newbird mites Date: Wednesday, April 14, 2010, 2:11 AM

Very well stated Z3. I agree with 100% of what you said. Re: New

My heart goes out to you. It sounds like you are doing all the right things if this is Cheyletiella you are suffering from. DId you see the mites? They look like pieces of white skin flakes, but they move. The Ivermectin takes several weeks perhaps to work completely as they reinfest from the environment once the cat is gone. Supposedly they cannot reproduce on you and don't live more than a couple months, so this should be over for you in a couple months tops if it is straight forward cheyletiella.If I were you and if it is cheyletiella, I would vacuum and steam clean everything and scrub all surfaces with orange plus. I would wash all bedding and laundry in hot water with BioKleen with enzymes and also scrub yourself in the shower at night with a tea tree soap before bed and put 2-sides tape around your bed if needed. Are they biting you all the time? Mostly at night? Mostly in a certain place in your house?

Many of us on this website are suffering from various types of bird mites which can live in the environment for years and years and can even adapt to live happily on humans. However, some of us are suffering from some sort of disease that is extremely poorly understood which was perhaps caused by mite bites or other bites. This disease (or various diseases) may be related to genetically modified mycobacterium or some other kind of GMO organisms which may have infected us when we got bit by infested pests. In any case, something may be in our bodies now (thanks to the bites) which has caused us to have what appear to be constantly new bites (which are slow to heal) from an invisible source (long after no more bird mites are found anymore) and also causes us to have crawling, prickling sensations for months/years on and on and on. It is like a terrible science

fiction. So, I am hoping you have the straight-forward kind of misery which comes from a mite such as Cheyletiella and that you will be rid of it with the use of Ivermectin and thorough deep cleaning until you have no more bites after just a couple months at the most.If this does get more complicated for you, it appears that some people on this website have been helped with various protocols from the Herbal Healer McCain's 3-point plan, and/or the use of IR saunas, and/or the use of products and protocols from Dr. Staninger and/or from the products and protocols of ESP Botanicals. Others have been helped by the use of MMS or boric acid or pesticides.. . But you hav eto be careful not to cause yourself harm.It is clear that we don't all have exactly the same thing on this website because not all solutions work for everyone in the same way. I am have learned the hard way that there is very great

truth in the saying, 'First do no harm'.Z3> >> > Hi everyone,> > > > I just wanted to say hi and I'm new to the forum. I joined a couple of weeks ago but I've been doing reading when I have the chance. I don't suffer from birdmites but I suffer from the walking dandruff mite. I always forget the correct name. It happened at the end of January when I took in a stray kitten. I already had four cats in the house. I took the kitten to the vet the same day, got medicine and quarantined him from the other cats. I kept him in the living room and had no idea he was infested with mites. Live and learn!> > > > A week or so later, I was sitting on the couch and got a

bite. It stung like crazy. The bites kept happening. I went through the regular routine, fleas, bed bugs, had two pest control companies out. There were no bed bugs or fleas. I went to regular dr, got some prednisone and cream. That didn't help much. Went back a couple of weeks later, got a different cream and an appointment with a derm. Well that was useless, skin biopsy came back as insect bite. Got another rx for another steroid cream. I didn't get this one filled.> > > > Then I came across the topix forum and this forum as well. I had to give up my cats a couple of weeks ago. It was just too much for me. Things are slowly getting better. I do lots of laundry, cleaning, and decluttering on a daily basis. I have started spraying with cyonara/nylar in the

house and vehicles. I've done that twice now. I also use boric acid in different places. I've adapted a pretty good laundry system thanks to the suggestions of others.> > > > I still have some on me but the bites are getting less and less. I just did three nites of sulfur/vaseline. In the daytime, I use the borax/hyrdo mixture and that's been a big help. I noticed these things seem to like my scalp. I had the sulfur on my scalp for three days and it has made a difference. They also seem to like my breast area. Are there any suggestions on what I can do to get rid of them there? I do take weekly doses of oral iver, three so far. Thanks.> > > > Michele> >>

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Hi

For the feet I wear rubber boots when I get out of the shower with 3 cups water

& 2 tbls borax , I walk around for 30 mins in them & it kills all foot bite s a

leaves feet with semi resitant layer on them , ( then I wear cocwbot boots to

keep them of my feet forever

Cococnut oil sprayed on all surfaces end this bug , the bug gets locked in to

it & the nice theingit is invisable , I use 2 oz & 48 oz of water , all item s

are to be dipped in the tub with 2 tbls cococnut oil & 30 0 gallons of water or

so, it kills all of them by suffacation I assume

For the scalp a good long bath in 2 tbls cococnut oil with 30 gallons of water

( 1 bathtub full ) , this suffoctes the bug , if I get a bad spot I use

16 oz peroxide

2 tbls borax &

32 oz water ,mixed & applied till the next shower , it kills all of the bug. .

Once per week, if I am having trouble, I use cup arm & hammer powdered laundry

soap in the tub...... or 1 teasp in a cup of water for spot treatments,I leave

for 5 mins then rinse the A & H. Arm & hammer powdered laundry soap is the end

of this bug . I mop with it , launder,a soak if I need in it, 1 cup per bath .

It is the strongest thing I have aver gound to kill it , besides cococnut oil

which is way healthier.

God bless you,

Bill

On Thu Apr 15th, 2010 5:19 PM EDT Michele Sheeran wrote:

>Hi Z3,

>Great advice!  Thanks!  I am not getting bit in bed.  I notice random bites

from time to time but make note of what I'm wearing and where I was at.  The

environment is coming along better.  I think one of my biggest problems is my

scalp.  They seem to reproduce there but I'm doing some good scalp treatments.  

I also notice my hands and feet are big areas too.  I wear vinyl gloves when I

clean most of the time.  I keep the gloves clean and change them often.   Some

days it is just too hot to wear them so I make sure I wash my hands a lot. 

>I have been trying some new internal stuff that has been helping, different

vitamins and supplements.  I've been cutting back on sugar and caffeine.  A

friend from another forum suggested I change clothes often which has been a big

help.  I also wash off at this time, not necessarily a shower.  Sometimes I use

wet ones and sometimes I use a hot wash rag, rinsed often with antibacterial

soap.  Could I be spreading them on to different areas of my body by using the

wash rag?  I was starting to wonder about that today.

>The iver has been a great help getting them out of my ears, nose & eyes.  I

will continue with this once a week for a couple of more weeks.  I really don't

get the creepy crawlies anymore but I noticed the vibrations in different parts

of my body.  I've been paying special attention to those areas.  I woke up last

night feeling the vibrations so I coated myself with vaseline and went to

sleep.  I find heavier moisturizers seem to help at night.  Any suggestions

about hand, hair or feet treatments would be greatly appreciated. 

>I also use a backbrush in the shower but I soak it after each use and then

spray straight alcohol on it.  Is that enough?  Same thing with my razor.  I've

been buying disposable razors and just using them a few times.

>Thanks,

>Michele

>

>

>

>

>From: Goldstein@... <Goldstein@...>

>Subject: Re: Re: New

>bird mites

>Date: Wednesday, April 14, 2010, 2:11 AM

>

>

>

>

>

>Very well stated Z3.  I agree with 100% of what you said.

>

>

>

> Re: New

>

>

>

>

>

>

>

>

>

>

>My heart goes out to you. It sounds like you are doing all the right things if

this is Cheyletiella you are suffering from. DId you see the mites? They look

like pieces of white skin flakes, but they move. The Ivermectin takes several

weeks perhaps to work completely as they reinfest from the environment once the

cat is gone. Supposedly they cannot reproduce on you and don't live more than a

couple months, so this should be over for you in a couple months tops if it is

straight forward cheyletiella.

>

>

>

>If I were you and if it is cheyletiella, I would vacuum and steam clean

everything and scrub all surfaces with orange plus. I would wash all bedding and

laundry in hot water with BioKleen with enzymes and also scrub yourself in the

shower at night with a tea tree soap before bed and put 2-sides tape around your

bed if needed.  Are they biting you all the time?  Mostly at night? Mostly in a

certain place in your house?

>

>

>

>Many of us on this website are suffering from various types of bird mites which

can live in the environment for years and years and can even adapt to live

happily on humans.  

>

>

>

>However, some of us are suffering from some sort of disease that is extremely

poorly understood which was perhaps caused by mite bites or other bites. This

disease (or various diseases) may be related to genetically modified

mycobacterium or some other kind of GMO organisms which may have  infected us

when we got bit by infested pests.  In any case, something may  be in our bodies

now (thanks to the bites) which has caused us to have what appear to be

constantly new bites (which are slow to heal) from an invisible source (long

after no more bird mites are found anymore) and also causes us to have crawling,

prickling  sensations for months/years on and on and on. It is like a terrible

science fiction.  

>

>

>

>So, I am hoping you have the straight-forward kind of misery which comes from a

mite such as Cheyletiella and that you will be rid of it with the use of

Ivermectin and thorough deep cleaning until you have no more bites after just a

couple months at the most.

>

>

>

>If this does get more complicated for you, it appears that some people on this

website have been helped with various protocols from the Herbal Healer McCain's

3-point plan, and/or the use of IR saunas, and/or the use of products and

protocols from Dr. Staninger and/or from the products and protocols of ESP

Botanicals. Others have been helped by the use of MMS or boric acid or

pesticides.. . But you hav eto be careful not to cause yourself harm.

>

>

>

>It is clear that we don't all have exactly the same thing on this website

because not all solutions work for everyone in the same way. I am have learned

the hard way that there is very great truth in the saying, 'First do no harm'.

>

>

>

>Z3

>

>

>

>

>

>> >

>

>

>> > Hi everyone,

>

>

>> >

>

>

>> > I just wanted to say hi and I'm new to the forum.  I joined a couple of

weeks ago but I've been doing reading when I have the chance.  I don't suffer

from birdmites but I suffer from the walking dandruff mite.  I always forget the

correct name.  It happened at the end of January when I took in a stray

kitten.  I already had four cats in the house.  I took the kitten to the vet the

same day, got medicine and quarantined him from the other cats.  I kept him in

the living room and had no idea he was infested with mites.  Live and learn!

>

>

>> >

>

>

>> > A week or so later, I was sitting on the couch and got a bite.  It stung

like crazy.  The bites kept happening.  I went through the regular routine,

fleas, bed bugs, had two pest control companies out.  There were no bed bugs or

fleas.  I went to regular dr, got some prednisone and cream.  That didn't help

much.  Went back a couple of weeks later, got a different cream and an

appointment with a derm.  Well that was useless, skin biopsy came back as insect

bite.  Got another rx for another steroid cream.  I didn't get this one filled.

>

>

>> >

>

>

>> > Then I came across the topix forum and this forum as well.  I had to give

up my cats a couple of weeks ago.  It was just too much for me.  Things are

slowly getting better.  I do lots of laundry, cleaning, and decluttering on a

daily basis.  I have started spraying with cyonara/nylar in the house and

vehicles.  I've done that twice now.  I also use boric acid in different

places.  I've adapted a pretty good laundry system thanks to the suggestions of

others.

>

>

>> >

>

>

>> > I still have some on me but the bites are getting less and less.  I just

did three nites of sulfur/vaseline.  In the daytime, I use the borax/hyrdo

mixture and that's been a big help.  I noticed these things seem to like my

scalp.  I had the sulfur on my scalp for three days and it has made a

difference.  They also seem to like my breast area.  Are there any suggestions

on what I can do to get rid of them there?  I do take weekly doses of oral iver,

three so far.  Thanks.

>

>

>> >

>

>

>> > Michele

>

>

>> >

>

>

>>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Holy spell check batman Sorry I am typing on a cellphone ,I can really speak

english & even spell.

So lame next time I will proof read, a little better ,

Bill

On Fri Apr 16th, 2010 12:58 AM EDT Doe wrote:

>Hi

>

> For the feet I wear rubber boots when I get out of the shower with 3 cups

water & 2 tbls borax , I walk around for 30 mins in them & it kills all foot

bite s a leaves feet with semi resitant layer on them , ( then I wear cocwbot

boots to keep them of my feet forever

> Cococnut oil sprayed on all surfaces end this bug , the bug gets locked in to

it & the nice theingit is invisable , I use 2 oz & 48 oz of water , all item s

are to be dipped in the tub with 2 tbls cococnut oil & 30 0 gallons of water or

so, it kills all of them by suffacation I assume

> For the scalp a good long bath in 2 tbls cococnut oil with 30 gallons of water

( 1 bathtub full ) , this suffoctes the bug , if I get a bad spot I use

>16 oz peroxide

>2 tbls borax &

>32 oz water ,mixed & applied till the next shower , it kills all of the bug. .

>Once per week, if I am having trouble, I use cup arm & hammer powdered

laundry soap in the tub...... or 1 teasp in a cup of water for spot treatments,I

leave for 5 mins then rinse the A & H. Arm & hammer powdered laundry soap is the

end of this bug . I mop with it , launder,a soak if I need in it, 1 cup per

bath . It is the strongest thing I have aver gound to kill it , besides cococnut

oil which is way healthier.

>

>God bless you,

>

>Bill

>

>On Thu Apr 15th, 2010 5:19 PM EDT Michele Sheeran wrote:

>

>>Hi Z3,

>> 

>>Great advice!  Thanks!  I am not getting bit in bed.  I notice random bites

from time to time but make note of what I'm wearing and where I was at.  The

environment is coming along better.  I think one of my biggest problems is my

scalp.  They seem to reproduce there but I'm doing some good scalp treatments.  

I also notice my hands and feet are big areas too.  I wear vinyl gloves when I

clean most of the time.  I keep the gloves clean and change them often.   Some

days it is just too hot to wear them so I make sure I wash my hands a lot. 

>> 

>>I have been trying some new internal stuff that has been helping, different

vitamins and supplements.  I've been cutting back on sugar and caffeine.  A

friend from another forum suggested I change clothes often which has been a big

help.  I also wash off at this time, not necessarily a shower.  Sometimes I use

wet ones and sometimes I use a hot wash rag, rinsed often with antibacterial

soap.  Could I be spreading them on to different areas of my body by using the

wash rag?  I was starting to wonder about that today.

>> 

>>The iver has been a great help getting them out of my ears, nose & eyes.  I

will continue with this once a week for a couple of more weeks.  I really don't

get the creepy crawlies anymore but I noticed the vibrations in different parts

of my body.  I've been paying special attention to those areas.  I woke up last

night feeling the vibrations so I coated myself with vaseline and went to

sleep.  I find heavier moisturizers seem to help at night.  Any suggestions

about hand, hair or feet treatments would be greatly appreciated. 

>> 

>>I also use a backbrush in the shower but I soak it after each use and then

spray straight alcohol on it.  Is that enough?  Same thing with my razor.  I've

been buying disposable razors and just using them a few times.

>> 

>>Thanks,

>>Michele

>>

>>

>>

>>

>>From: Goldstein@... <Goldstein@...>

>>Subject: Re: Re: New

>>bird mites

>>Date: Wednesday, April 14, 2010, 2:11 AM

>>

>>

>> 

>>

>>

>>

>>Very well stated Z3.  I agree with 100% of what you said.

>>

>>

>>

>> Re: New

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 

>>

>>My heart goes out to you. It sounds like you are doing all the right things if

this is Cheyletiella you are suffering from. DId you see the mites? They look

like pieces of white skin flakes, but they move. The Ivermectin takes several

weeks perhaps to work completely as they reinfest from the environment once the

cat is gone. Supposedly they cannot reproduce on you and don't live more than a

couple months, so this should be over for you in a couple months tops if it is

straight forward cheyletiella.

>>

>>

>>

>>If I were you and if it is cheyletiella, I would vacuum and steam clean

everything and scrub all surfaces with orange plus. I would wash all bedding and

laundry in hot water with BioKleen with enzymes and also scrub yourself in the

shower at night with a tea tree soap before bed and put 2-sides tape around your

bed if needed.  Are they biting you all the time?  Mostly at night? Mostly in a

certain place in your house?

>>

>>

>>

>>Many of us on this website are suffering from various types of bird mites

which can live in the environment for years and years and can even adapt to live

happily on humans.  

>>

>>

>>

>>However, some of us are suffering from some sort of disease that is extremely

poorly understood which was perhaps caused by mite bites or other bites. This

disease (or various diseases) may be related to genetically modified

mycobacterium or some other kind of GMO organisms which may have  infected us

when we got bit by infested pests.  In any case, something may  be in our bodies

now (thanks to the bites) which has caused us to have what appear to be

constantly new bites (which are slow to heal) from an invisible source (long

after no more bird mites are found anymore) and also causes us to have crawling,

prickling  sensations for months/years on and on and on. It is like a terrible

science fiction.  

>>

>>

>>

>>So, I am hoping you have the straight-forward kind of misery which comes from

a mite such as Cheyletiella and that you will be rid of it with the use of

Ivermectin and thorough deep cleaning until you have no more bites after just a

couple months at the most.

>>

>>

>>

>>If this does get more complicated for you, it appears that some people on this

website have been helped with various protocols from the Herbal Healer McCain's

3-point plan, and/or the use of IR saunas, and/or the use of products and

protocols from Dr. Staninger and/or from the products and protocols of ESP

Botanicals. Others have been helped by the use of MMS or boric acid or

pesticides.. . But you hav eto be careful not to cause yourself harm.

>>

>>

>>

>>It is clear that we don't all have exactly the same thing on this website

because not all solutions work for everyone in the same way. I am have learned

the hard way that there is very great truth in the saying, 'First do no harm'.

>>

>>

>>

>>Z3

>>

>>

>>

>>

>>

>>> >

>>

>>

>>> > Hi everyone,

>>

>>

>>> >

>>

>>

>>> > I just wanted to say hi and I'm new to the forum.  I joined a couple of

weeks ago but I've been doing reading when I have the chance.  I don't suffer

from birdmites but I suffer from the walking dandruff mite.  I always forget the

correct name.  It happened at the end of January when I took in a stray

kitten.  I already had four cats in the house.  I took the kitten to the vet the

same day, got medicine and quarantined him from the other cats.  I kept him in

the living room and had no idea he was infested with mites.  Live and learn!

>>

>>

>>> >

>>

>>

>>> > A week or so later, I was sitting on the couch and got a bite.  It stung

like crazy.  The bites kept happening.  I went through the regular routine,

fleas, bed bugs, had two pest control companies out.  There were no bed bugs or

fleas.  I went to regular dr, got some prednisone and cream.  That didn't help

much.  Went back a couple of weeks later, got a different cream and an

appointment with a derm.  Well that was useless, skin biopsy came back as insect

bite.  Got another rx for another steroid cream.  I didn't get this one filled.

>>

>>

>>> >

>>

>>

>>> > Then I came across the topix forum and this forum as well.  I had to give

up my cats a couple of weeks ago.  It was just too much for me.  Things are

slowly getting better.  I do lots of laundry, cleaning, and decluttering on a

daily basis.  I have started spraying with cyonara/nylar in the house and

vehicles.  I've done that twice now.  I also use boric acid in different

places.  I've adapted a pretty good laundry system thanks to the suggestions of

others.

>>

>>

>>> >

>>

>>

>>> > I still have some on me but the bites are getting less and less.  I just

did three nites of sulfur/vaseline.  In the daytime, I use the borax/hyrdo

mixture and that's been a big help.  I noticed these things seem to like my

scalp.  I had the sulfur on my scalp for three days and it has made a

difference.  They also seem to like my breast area.  Are there any suggestions

on what I can do to get rid of them there?  I do take weekly doses of oral iver,

three so far.  Thanks.

>>

>>

>>> >

>>

>>

>>> > Michele

>>

>>

>>> >

>>

>>

>>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>

>

>

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  • 1 month later...
Guest guest

Hi Ronda,

Welcome to the group. I saw the pictures you posted of Rayanna. She's real

cute!

Looking forward to hearing more from you.

Alana

>

>

> Hello!! My daughter Rayanna is 4yrs old and was diagnosed at 2yrs with

> SMA II. I have been around for a little over two years. We are one of

> the few families that have went to China for cord blood stem cell

> treatments. Rayanna did well with these and did regain some muscle

> control. She has been the light of my life and has taught me so many

> new things!!! I hope to communicate with others who deal with SMA on a

> daily basis. I still have room to learn... [;)]

>

>

>

> Ronda

>

>

>

>

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Hi, Ronda! Welcome! ~a

________________________________

From: rochra <rochra@...>

Sent: Mon, May 17, 2010 5:40:33 PM

Subject: New

Hello!! My daughter Rayanna is 4yrs old and was diagnosed at 2yrs with

SMA II. I have been around for a little over two years. We are one of

the few families that have went to China for cord blood stem cell

treatments. Rayanna did well with these and did regain some muscle

control. She has been the light of my life and has taught me so many

new things!!! I hope to communicate with others who deal with SMA on a

daily basis. I still have room to learn... [;)]

Ronda

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vitamins help??AOn May 20, 2010, at 22:07, "betsymo3" <betsymccafferty@...> wrote:

Glad to finally join group. It's helpful to hear what works for other families.

My son is 8. We've had mixed diagnoses but the majority now agree he has mild asperger's. Doesn't have many of the characteristics but is a concrete thinker, knows every thing about space and hotwheels and does have anxiety issues. He does really well at school as long as he can focus on his work. He's very kind but socially awkward.

Just found out he has a mitochondrial disease and pyrroluria, something kids on the spectrum are more likely to have. Explains why the vitamins seem to make such a difference for him. If you haven't already get the tests (an organic acids test I believe and a kryptopyrroluria test). Very helpful in using the right combination of vitamins. Explains why it is so hard for him to focus and his low muscle tone. Sugar for us is also bad-his triglycerides are scary high.

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  • 2 months later...

Hey, a!Glad you found the group, and I know that you will find lots of helpful info here.Have enjoyed talking with you, and I will talk with you again soon!         Janet, Sage's mom and fellow Alabamian:)

                       On Mon, Aug 23, 2010 at 7:02 PM, erica.martella <erica.martella@...> wrote:

 

Hey everybody. My name is a. I have a 10 month old son, n, with congenital infantile scoliosis. I am very uneducated about scoliosis and could use some help. A friend of mine has told me a little bit about Mehta casting but, I could use any information anyone is willing to share. We go back to the doctor on Sept. 15th and I would love to be armed with information and get started on his casting. Thanks!

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Thank you. My dr did mention that surgery is a possibility in the future but he

would like to try the least invasive methods first. Casting, then bracing before

we go down that road. I didn't know there was more than one kind of cast until

recently and I'm not sure my dr does Mehta casting but it sounds like that's the

type he needs.

>

> Hi a, welcome to CAST! From what I understand, with congenital, surgery

can

> be needed, and we have parents on this group with more knowledge on that. Even

> if surgery is needed, casting can often help greatly. Check out some of the

> kid's stories on www.infantilescoliosis.org (click on stories) and you can

also

> see children in casts in the videos at the bottom of the home page. Ask any

and

> all questions you have, and you may want to look at congenital scoli groups as

> well- we hope we all can help!

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners,

> currently down from 62 degrees to 20 in cast)

>

>

>

>

> ________________________________

> From: erica.martella <erica.martella@...>

> infantile scoliosis treatment

> Sent: Mon, August 23, 2010 5:02:24 PM

> Subject: New

>

>

> Hey everybody. My name is a. I have a 10 month old son, n, with

> congenital infantile scoliosis. I am very uneducated about scoliosis and could

> use some help. A friend of mine has told me a little bit about Mehta casting

> but, I could use any information anyone is willing to share. We go back to the

> doctor on Sept. 15th and I would love to be armed with information and get

> started on his casting. Thanks!

>

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Hi and welcome! I am not of much help with providing information about congenital scoli - sorry - but I am sure other parents will be able to help you out. It looks like Heidi already sent you the info to access the website and stories. You may want to also look at the Mehta study as well. It's been a while since I have read it, but it may help you get a foundation of knowledge to build on.Best of luck - we'll be following your story....and hopefully successes :)Take care,

Jen

Pickerington, Ohio

Mommy to Bryce, 2 years old

Started with 48 degree curve (laying down)

Cast #8 - Rochester, NYFrom: erica.martella <erica.martella@...>Subject: Newinfantile scoliosis treatment Date: Monday, August 23, 2010, 8:02 PM

Hey everybody. My name is a. I have a 10 month old son, n, with congenital infantile scoliosis. I am very uneducated about scoliosis and could use some help. A friend of mine has told me a little bit about Mehta casting but, I could use any information anyone is willing to share. We go back to the doctor on Sept. 15th and I would love to be armed with information and get started on his casting. Thanks!

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Welcome to CAST a. There is a lot of information for you on the ISOP home page and if there's other questions you need answered, just ask away. Everyone here is very helpful! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: erica.martella <erica.martella@...>To:

infantile scoliosis treatment Sent: Mon, August 23, 2010 8:02:24 PMSubject: New

Hey everybody. My name is a. I have a 10 month old son, n, with congenital infantile scoliosis. I am very uneducated about scoliosis and could use some help. A friend of mine has told me a little bit about Mehta casting but, I could use any information anyone is willing to share. We go back to the doctor on Sept. 15th and I would love to be armed with information and get started on his casting. Thanks!

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  • 2 months later...

On Thursday, November 4, 2010 20:18, " Brittany Greene " <bgreene137@...>

said:

> Hi! I was referred to your group by an old co worker, I'm new looking to

> move to central america within the next 2 years or so for an extended stay.

> I heard that you all might know about some options to continue working as a

> medic while I stay down there.

Here's another I didn't want to respond to without having definitive advice to

offer. However, I want to welcome you to the forum here and wish you luck with

your transition.

I spent two tours in Central America with the military many years back and loved

the experience and the culture. And I spoke almost no Spanish at the time, too!

I can't speak specifically to any South American country, except for Colombia.

However, I expect that in most of the continent, so long as your Spanish is

competent, achieving some sort of reciprocity should not be difficult. What

they refer to as a " Paramedico " there is usually slightly below an EMT-B here in

training.

The biggest obstacle I would expect for you would be in actually finding gainful

employment. Much of the EMS there is not paid. And those that are paid are

certainly not paid well. So long as you're not looking to actually make a good

living, you should be able to find something easily.

On the other hand, if you are looking more for an industrial gig, that's a

different story. Training and experience requirements will be much higher, and

vary greatly from employer to employer, but it sounds like you're probably a

good candidate, assuming you have all the current merit badge cards.

There are, of course, volunteer humanitarian opportunities in rural healthcare

out in the sticks with various humanitarian organisations. While they pay

little to nothing, they are excellent experience which will prepare you well for

solo remote work in the future.

Best of luck!

Rob

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Hi Rob! Thank you.

My Spanish is aright.. Im working with my brother in law (from El Salvador)

who has now refused to speak to me in English & Rosetta Stone. Im getting

there.

It's much less about gainful employment than it is about doing something

fulfilling at this point. I hope (and it seems to have worked out this way)

to be set up with people that can point me in the right direction. It's

time to remember what's important.

I've got lots of bells & whistles including almost every instructor card. I

like entertaining the idea of rual healthcare too. I love the idea of solo

remote work. I have a great uncle that is an MD PhD with Doctors Without

Borders. I can't think of something that would be more rewarding.

Thanks for the help! I hope all of this all falls into place :) Take care!

Best,

Brittany

be disruptive but in the name of making the world a better place

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  • 4 months later...
Guest guest

>

> Hi, my 3 year old son was recently dx with PDD. BEhavior problems

> where do I begin? My son seems to be in state of unhapiness

> he " EEEEE " S) when his videos are finished and will throw everything

> down when tantrumming (his food, the computer, the phone etc.) It's

> very unnerving. My son also places things in his mouth. (dirt,

> crayons,stones) He hates to comb his hair, brush his teeth. His diet

> is horrible it consists of pediasure, goldfish crackers, chicken

> nuggets, peas, and juice) He drinks pediasure from a bottle and we

> are having the hardest time removing it. I took the summer off and i

> don't know where to begin and how to help him. My main concern is the

> eating of non-edibles since he'll be starting pre-school soon. Thanks

> for letting me vent.

> debbi

>

Debbi

I am also new to this group hearing you say he is drinking pedicure, goldfish

crackers I am wondering if he is allergic to milk. Our past experience with our

grandson was what he craved was causing him the greatest harm .A lot of our kids

have allergy issues somrtimes this may be causing problems in behaviors.

Carole

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Guest guest

Pat,

Send me an e-mail. I had to go to my

laptop because my computer is down and I don’t have your e-mail address on it.

Thanks, Lois

I don't give

in,I don't give up and I don't take NO for an answer.

new

Hello-

My name is Chelly and I have an 8yro son that has high fuctioning

autistism.

He reacts very violently to his triggers (hits, pulls hair, calls names

etc) and as of late, I am finding it harder to help him through

those

moments and I find it harder to remain calm myself. I have 3

other children who are younger than him & they are often the

target of

his anger.

I am really struggling with how to keep all my children safe and how to

remain calm & helpful during these times.

My son and I are not very close. I am his step-parent, he was 4 when I

became a part of the family. He has always been super close to my

partner- his birth mom- and we just have never related very well. We

love each other very much, but I feel that our lack of common ground &

closeness make it harder for us sometimes.

Any advice, support or tips would be greatly appreciated.

Thank you.

-Chelly

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