Update

[Guest guest]

Patty...thank you for your response. Even today I've been questioning

the need to get the capsule taken out-you've answered my thoughts... I

will be sure to get the capsule out.

My left breast continues to feel " sick " ...how can a breast feel sick?

It feels like it goes in to my underarm and down my left side...almost

like it is leaking but everything looks normal on the outside of my

body.

I started the beta blocker yesterday and took it again today...I cannot

get over how much better I feel. I wonder if my implant is somehow

causing me to have tachycardia...guess I won't know until they are

removed. I would imagine scar tissue could create problems for us too.

Such a nightmare.

Anne

[Guest guest]

Anne,

Some women have had heart issues. These have been rarer than the

autoimmune symptoms, but we definitely have had women crop up with

heart issues. I am glad you are feeling better on the beta blocker!

As for the breast feeling sick, did you read those posts I sent to you

and the group regarding the women who had infections in the breast

area upon explant? Some of them were so bad that the doctor had

claimed that they had never seen worse. One doctor said the implants

were " sitting in a sea of green ooze. " This is often accompanied by a

burning feeling that runs down the limbs and worse.

I hope you can get explanted very soon.

Are you going to continue looking in Minnesota, or look elsewhere?

Patty

>

> Patty...thank you for your response. Even today I've been questioning

> the need to get the capsule taken out-you've answered my thoughts... I

> will be sure to get the capsule out.

>

> My left breast continues to feel " sick " ...how can a breast feel sick?

> It feels like it goes in to my underarm and down my left side...almost

> like it is leaking but everything looks normal on the outside of my

> body.

>

> I started the beta blocker yesterday and took it again today...I cannot

> get over how much better I feel. I wonder if my implant is somehow

> causing me to have tachycardia...guess I won't know until they are

> removed. I would imagine scar tissue could create problems for us too.

>

> Such a nightmare.

>

> Anne

>

[Guest guest]

I've read so much and yet I'm astounded when I see I've read

something and haven't any recollection of the information...sort of

like my life-I'm living it (I guess that's what it's called) but

recall very little of it...and that may be a good thing. Maybe it's

because there is very little variety from one day to the next-I am

recalling it, there just isn't much to recall.

Anyway... I suppose I have a picture of what someone would feel

like/look like if they have the gangrene implants...and I'm not it.

After reading your note though... and pausing for a moment... I

realize...that could very well be my picture. I'm very ill...and

they keep trying to tell me it is panic and anxiety. I have to

believe I'm about as low key as it gets though, so as hard as I've

tried to make that picture work...because then we could proceed to

recovery... it just does not work.

So I just tried the word TOXIC on my tongue........

Yes, that works. I feel pukey, icky, yucky, sick. Poison does not

work...but TOXIC does. ...and I believe whatever it is... it is

slowly killing me. ...and I don't feel panicked about that but more

like .... " you stupid damn idiots.... "

So... if I get these out of my chest...and let's say I do have a

miraculous recovery (which I have a sense I will, if I don't have to

wait too much longer)...what will the medical world say then? I mean

I know they will continue to deny it but are they going to say it is

just a coincidence that I recovered at the same time of explant?

Remember, I have been on this damn couch for almost 9 years, and it

is documented. I've had some short stints where I've worked but let

me tell you, I literally crawled to work and then crawled back

home... and then stayed in bed. See, I've actually moved up in the

world because I used to be in bed all the time and now I'm on the

couch all the time; it feels like an advancement in life

though....how pathetic! I was only able to move up to the couch

because of the breathing exercises I started 2.5 months ago with a

chiro... I might be dead right now if it wasn't for that miracle.

Currently, I've been feeling much sharper... oh duh... I just

realized why... it is another med that I take that I stopped taking

and now just started taking again. It's an amphetamine... a HUGE

miracle drug for me (ADHD).

My body feels weak though-I just cannot stand up for any length of

time... and my stomach always hurts lately... I get a lot of nausea-

it doesn't keep me from eating but does affect what food appeals to

me from one day to the next-a real pain. Yes, it is the implants.

Dear God, I need these out of my body... it is going to be such a

hard journey to do so. The thing is... I'm going to lose my home if

I don't get them out and back to work because I haven't got a penny

coming in and I have no more money in my bank account. I've been

able to pay my bills every month and that has been a miracle

too...but I'm down to the last month of money. I already have a 2nd

mortgage... I bought the house 18 months ago... isn't that a miracle

too-how did I ever manage to buy a home. Let me tell you, it is a

miracle. Writing that, I realize God helped me get this home (it was

too much of a miracle) so he does not intend for me to lose it. It

is a big two story home and in August I moved to one level and rent

out my upstairs now, which covers more than 1/2 my mortgage. God

will give me the strength and guidance to get this all figured out.

He has been with me every step of the way, there is no question of

that.

Sorry... I've rambled. You know, it just feels so incredibly awesome

though...after all these years... to find people who speak my

language. Day after day I would think, and tell myself... I just

need to try harder...if I would just try harder... that's all it

is...I just need to try harder...

Anne

[Guest guest]

Anne,

We speak your language alright... we know what it feels like, what it

looks like, what it tastes like, what it smells like, we know the

whole realm of it.

I'm just sorry it took you so many years to find us.

Patty

>

> I've read so much and yet I'm astounded when I see I've read

> something and haven't any recollection of the information...sort of

> like my life-I'm living it (I guess that's what it's called) but

> recall very little of it...and that may be a good thing. Maybe it's

> because there is very little variety from one day to the next-I am

> recalling it, there just isn't much to recall.

>

> Anyway... I suppose I have a picture of what someone would feel

> like/look like if they have the gangrene implants...and I'm not it.

> After reading your note though... and pausing for a moment... I

> realize...that could very well be my picture. I'm very ill...and

> they keep trying to tell me it is panic and anxiety. I have to

> believe I'm about as low key as it gets though, so as hard as I've

> tried to make that picture work...because then we could proceed to

> recovery... it just does not work.

>

> So I just tried the word TOXIC on my tongue........

>

> Yes, that works. I feel pukey, icky, yucky, sick. Poison does not

> work...but TOXIC does. ...and I believe whatever it is... it is

> slowly killing me. ...and I don't feel panicked about that but more

> like .... " you stupid damn idiots.... "

>

> So... if I get these out of my chest...and let's say I do have a

> miraculous recovery (which I have a sense I will, if I don't have to

> wait too much longer)...what will the medical world say then? I mean

> I know they will continue to deny it but are they going to say it is

> just a coincidence that I recovered at the same time of explant?

> Remember, I have been on this damn couch for almost 9 years, and it

> is documented. I've had some short stints where I've worked but let

> me tell you, I literally crawled to work and then crawled back

> home... and then stayed in bed. See, I've actually moved up in the

> world because I used to be in bed all the time and now I'm on the

> couch all the time; it feels like an advancement in life

> though....how pathetic! I was only able to move up to the couch

> because of the breathing exercises I started 2.5 months ago with a

> chiro... I might be dead right now if it wasn't for that miracle.

>

> Currently, I've been feeling much sharper... oh duh... I just

> realized why... it is another med that I take that I stopped taking

> and now just started taking again. It's an amphetamine... a HUGE

> miracle drug for me (ADHD).

>

> My body feels weak though-I just cannot stand up for any length of

> time... and my stomach always hurts lately... I get a lot of nausea-

> it doesn't keep me from eating but does affect what food appeals to

> me from one day to the next-a real pain. Yes, it is the implants.

> Dear God, I need these out of my body... it is going to be such a

> hard journey to do so. The thing is... I'm going to lose my home if

> I don't get them out and back to work because I haven't got a penny

> coming in and I have no more money in my bank account. I've been

> able to pay my bills every month and that has been a miracle

> too...but I'm down to the last month of money. I already have a 2nd

> mortgage... I bought the house 18 months ago... isn't that a miracle

> too-how did I ever manage to buy a home. Let me tell you, it is a

> miracle. Writing that, I realize God helped me get this home (it was

> too much of a miracle) so he does not intend for me to lose it. It

> is a big two story home and in August I moved to one level and rent

> out my upstairs now, which covers more than 1/2 my mortgage. God

> will give me the strength and guidance to get this all figured out.

> He has been with me every step of the way, there is no question of

> that.

>

> Sorry... I've rambled. You know, it just feels so incredibly awesome

> though...after all these years... to find people who speak my

> language. Day after day I would think, and tell myself... I just

> need to try harder...if I would just try harder... that's all it

> is...I just need to try harder...

>

> Anne

>

[Guest guest]

My paint keeps peeling off too...and my stickers....kind of a bummer

since my daughters only had it painted for a week. I am thinking about

peeling it all off as well...I used acrylic paints and Modge Podge over it

like most people have suggested.

Anyone have a better idea??? Is there a way to remove the paint safely

other than peeling it off?

From: Antonia <mommy2jaylina@...>Subject: UpdatePlagiocephaly Date: Friday, February 13, 2009, 6:25 PM

Well so far we have had the DOC band for almost 4 weeks. No changes yet but I'm guessing he hasnt grew much yet. I'm still holding out hope though we still 3 more months . He has been getting lots of heat rash, which in turn causes clogged sweat glands that can read and inflammed. Goodness. Other than that we have painted it once but the paint keeps peeling off. So I'm gonna peel it all off today and try again. Maybe I need to try a different kind of paint?

[Guest guest]

Patty,

I am so sorry you about this horrible experience you had with the scorpion sting!! How frightening!! I am so happy to hear you are ok. Life is very fragile, isn't it?

I didn't realize you were attending school.. Are you working towards a degree in a particular field?

Keep up with your detoxing.

What things do you do during your afternoon wind-down period?

My prayers are with you.

Love & Hugs,

a H.

From: Tricia Trish <glory2glory1401@...> Sent: Tuesday, April 21, 2009 6:49:34 PMSubject: Update

Hi Ladies,I just wanted to share a quick update while my coffee brews. (Coffee not for drinking!)I am finally down to the last day of my steroid pack from the hospital, and can't wait to be off them, but at the same time, I see that my body was benefitting from them..I am experiencing more fatigue and visual disturbances. ...just like in those early days of my illness from implants. It's not a wonderful realization, but I'm trusting God to bring me through this. I believe that my body is laboring under the effects of the neurotoxins still, having experienced a hit that was just a bit too much for my body to handle. I also feel muscle weakness...gosh, I miss the old energized me! It's a bad flashback, and I'm none too happy about it. Ah, I'm going to be learning another lesson about healing, unfortunately! I will keep you all posted as time goes on. I just need to get

through my two final exams and then I will be able to relax.... I MUST relax. Right now I feel the desperate need to get back to my afternoon wind-down, just like when I was ill, rather than my current pushing through to bedtime that I've been used to. ARGH!! I don't want to discourage anyone, but let this be an important example for us as to how vital it is to protect every little bit of progress we make, and not take our health for granted when we've seemed to make a good bit of recovery. Of course, I know that not many of you will get stung by a scorpion. But there are many other toxic assaults out there from different sources, and if I can help anyone by urging you to stay vigilant with your health, that is my goal. Hopefully I will recover fully within a few days/weeks and be good as new. But I'm not taking any chances.. I am going back into full detox mode again, with as much

therapy as I can fit into my schedule at the moment, and pray that my health returns to robustness again quickly. Coffee enemasAfternoon wind-downEarly to bedCareful diet...no sugar, cut out wheat, everything that is not helpfulAntoxidant teas, supplementsPrayer and meditationInfrared SaunaSunlight 15 min a dayWaterI wish you all health.God bless,Patty

[Guest guest]

Hi a,

I think I'm coming out of this toxic exposure slowly. I'm staying very positive

and I've seen God all over this experience! It's pretty cool. I'm so blessed.

Yup, I went back to school in January. I'm working toward becoming a Diagnostic

Medical Sonographer. It's a process, so I'll be in school for a few years. I

already have a Bachelor's degree, so I was ahead of the game, though I still

needed a few pre-req's. No problem.

I love the afternoon wind-down period I used to have and I look forward to doing

it again if I can fit it into my schedule well. I had some issues with cortisol

and brain fog and all the fatigue early in my illness, and while we had our

businesses back then, I was able to finish my work by about 3:30 in the

afternoon, and I LOVED going to my rocking chair and settling back for the

wind-down before dinner. I would usually try to recline and then put on my

headphones and my favorite music and just let my mind deflate into a peaceful

state. I would pray and meditate with my eyes closed. I would think about

those things that would only bring me comfort and peace, or work through any

issues that needed sorting out to bring me to a state of peace. Ah, I loved

that feeling.

Sometimes I would read if I felt the urge to read, either my Bible or some

current health related book, but the most calming time was with that music.

I might have started dinner beforehand with a crock pot or a one dish type meal

that wouldn't take much effort, or make a salad just before my husband got home.

The goal was to allow myself that time to feel at peace and done with my day,

though I still had the evening. Sometimes I spent the whole rest of the evening

in that rocking chair if I fell asleep!

I have not been able to have that wind down afternoon period for years now,

since we grew bigger and my work now takes up most of the day, and often into

the evening hours, even late evening hours. I didn't realize how much I've

missed that afternoon break until this scorpion sting.

The coffee enemas are doing great things for me. I'll keep them up.

a, how are you? We haven't heard from you in awhile!

I'm praying that you are being blessed with good health!

Hugs,

Patty

>

> Patty,

>

> I am so sorry you about this horrible experience you had with the scorpion

sting!!   How frightening!!   I am so happy to hear you are ok.      Life is

very fragile, isn't it?   

>

> I didn't realize you were attending school.     Are you working towards a

degree in a particular field?    

>

> Keep up with your detoxing.

>

> What things  do you do during your afternoon wind-down period?

>

> My prayers are with you.

>

> Love & Hugs,

>

> a H.

>

>

>

>

>

> ________________________________

> From: Tricia Trish <glory2glory1401@...>

>

> Sent: Tuesday, April 21, 2009 6:49:34 PM

> Subject: Update

>

>

>

>

>

> Hi Ladies,

> I just wanted to share a quick update while my coffee brews.  (Coffee not for

drinking!)

>

> I am finally down to the last day of my steroid pack from the hospital, and

can't wait to be off them, but at the same time, I see that my body was

benefitting from them.

>

> I am experiencing more fatigue and visual disturbances. ...just like in those

early days of my illness from implants.  It's not a wonderful realization, but

I'm trusting God to bring me through this.  I believe that my body is laboring

under the effects of the neurotoxins still, having experienced a hit that was

just a bit too much for my body to handle.

>

> I also feel muscle weakness...gosh, I miss the old energized me!  It's a bad

flashback, and I'm none too happy about it.  Ah, I'm going to be learning

another lesson about healing, unfortunately!

>

> I will keep you all posted as time goes on.  I just need to get through my two

final exams and then I will be able to relax.... I MUST relax.  Right now I feel

the desperate need to get back to my afternoon wind-down, just like when I was

ill, rather than my current pushing through to bedtime that I've been used to.  

ARGH!! 

>

> I don't want to discourage anyone, but let this be an important example for us

as to how vital it is to protect every little bit of progress we make, and not

take our health for granted when we've seemed to make a good bit of recovery. 

Of course, I know that not many of you will get stung by a scorpion.  But there

are many other toxic assaults out there from different sources, and if I can

help anyone by urging you to stay vigilant with your health, that is my goal. 

>

> Hopefully I will recover fully within a few days/weeks and be good as new. 

But I'm not taking any chances.  I am going back into full detox mode again,

with as much therapy as I can fit into my schedule at the moment, and pray that

my health returns to robustness again quickly. 

>

> Coffee enemas

> Afternoon wind-down

> Early to bed

> Careful diet...no sugar, cut out wheat, everything that is not helpful

> Antoxidant teas, supplements

> Prayer and meditation

> Infrared Sauna

> Sunlight 15 min a day

> Water

>

> I wish you all health.

> God bless,

> Patty

>

[Guest guest]

Patty,

Congratulations on going back to school. That's awesome!

It's good to hear you are improving from this toxic exposure.

I have improved alot since my explant Feb. 2008. I was so ill and felt like I was going to die. My main frustration is the fatigue that remains. I tend my two little grandkids every Monday. I work at the Dermatology Office part-time. I just get too fatigued if I try to push it harder. I was hoping to be able to increase my hours at work even more but so far, it's not possible. I seem to catch viruses easily when I am exposed to them. I don't know if you remember how I had such a terrible chronic cough when I was so ill. Well, my Internist has diagnosed me with Asthma and prescribed inhalers and they have really helped alot. So....thanks to breast implant illness, I now have asthma to deal with. I try to avoid

stress as much as possible and I've learned that it's ok to relax and enjoy the peace and quiet. I never used to live like that before I got sick. I was Type A, went 90 miles a minute all day long, never took time to relax, never took a lunch at work, I was high strung and busy, busy, busy 24/7. So I live very differently now and it's much more enjoyable. It's what I have to do for my health. When I get too busy or stressed, I get weak, fatigued, dizzy and my asthma acts up and my voice gets raspy and weak. I'm considering trying to do a fast here soon. Not looking very forward to it with working and all, but I'm curious to see if it would help my health progress even further.

When I get discouraged, I remember it took you 4 years to get well. It takes alot of patience because healing is slow and there are setbacks which are very discouraging. You have helped so many of us. You are a great role model.

Thanks for all the help you have given me through the whole implant nightmare.

Good Luck with school!

Hugs~

a H.

From: glory2glory1401 <glory2glory1401@...> Sent: Thursday, April 23, 2009 11:35:27 AMSubject: Re: Update

Hi a,I think I'm coming out of this toxic exposure slowly. I'm staying very positive and I've seen God all over this experience! It's pretty cool. I'm so blessed.Yup, I went back to school in January. I'm working toward becoming a Diagnostic Medical Sonographer. It's a process, so I'll be in school for a few years. I already have a Bachelor's degree, so I was ahead of the game, though I still needed a few pre-req's. No problem. I love the afternoon wind-down period I used to have and I look forward to doing it again if I can fit it into my schedule well. I had some issues with cortisol and brain fog and all the fatigue early in my illness, and while we had our businesses back then, I was able to finish my work by about 3:30 in the afternoon, and I LOVED going to my rocking chair and settling back for the wind-down before dinner. I would usually try to recline and then put on my headphones and my favorite music and just let my

mind deflate into a peaceful state. I would pray and meditate with my eyes closed. I would think about those things that would only bring me comfort and peace, or work through any issues that needed sorting out to bring me to a state of peace. Ah, I loved that feeling. Sometimes I would read if I felt the urge to read, either my Bible or some current health related book, but the most calming time was with that music.I might have started dinner beforehand with a crock pot or a one dish type meal that wouldn't take much effort, or make a salad just before my husband got home. The goal was to allow myself that time to feel at peace and done with my day, though I still had the evening. Sometimes I spent the whole rest of the evening in that rocking chair if I fell asleep!I have not been able to have that wind down afternoon period for years now, since we grew bigger and my work now takes up most of the day, and often into the evening

hours, even late evening hours. I didn't realize how much I've missed that afternoon break until this scorpion sting. The coffee enemas are doing great things for me. I'll keep them up.a, how are you? We haven't heard from you in awhile!I'm praying that you are being blessed with good health!Hugs,Patty>> Patty,> > I am so sorry you about this horrible experience you had with the scorpion sting!! How frightening! ! I am so happy to hear you are ok. Life is very fragile, isn't it? > > I didn't realize you were attending school. Are you working towards a degree in a

particular field? > > Keep up with your detoxing.> > What things do you do during your afternoon wind-down period?> > My prayers are with you.> > Love & Hugs,> > a H.> > > > > > ____________ _________ _________ __> From: Tricia Trish <glory2glory1401@ ...>> > Sent: Tuesday, April 21, 2009 6:49:34 PM> Subject: Update> > > > > > Hi Ladies,> I just wanted to share a quick update while my coffee brews. (Coffee not for drinking!)> > I am finally down to the last day of my steroid pack from the hospital, and can't wait to be off

them, but at the same time, I see that my body was benefitting from them.> > I am experiencing more fatigue and visual disturbances. ....just like in those early days of my illness from implants. It's not a wonderful realization, but I'm trusting God to bring me through this. I believe that my body is laboring under the effects of the neurotoxins still, having experienced a hit that was just a bit too much for my body to handle. > > I also feel muscle weakness...gosh, I miss the old energized me! It's a bad flashback, and I'm none too happy about it. Ah, I'm going to be learning another lesson about healing, unfortunately! > > I will keep you all posted as time goes on. I just need to get through my two final exams and then I will be able to relax.... I MUST relax. Right now I feel the desperate need to get back to my afternoon wind-down, just like when I was ill, rather than

my current pushing through to bedtime that I've been used to. ARGH!! > > I don't want to discourage anyone, but let this be an important example for us as to how vital it is to protect every little bit of progress we make, and not take our health for granted when we've seemed to make a good bit of recovery. Of course, I know that not many of you will get stung by a scorpion. But there are many other toxic assaults out there from different sources, and if I can help anyone by urging you to stay vigilant with your health, that is my goal. > > Hopefully I will recover fully within a few days/weeks and be good as new. But I'm not taking any chances. I am going back into full detox mode again, with as much therapy as I can fit into my schedule at the moment, and pray that my health returns to robustness again quickly.. > > Coffee enemas> Afternoon

wind-down> Early to bed> Careful diet...no sugar, cut out wheat, everything that is not helpful> Antoxidant teas, supplements> Prayer and meditation> Infrared Sauna> Sunlight 15 min a day> Water> > I wish you all health.> God bless,> Patty>

[Guest guest]

Wow you are amazing to keep things together so well for your children.

I hope you make some helpful connections in NC to people, church,

something so you are not alone coping.

We will keep you in our prayers that you are safe and find peace

in NC.

{{{Hugs}}}

Pam

I hope NC toa a

>

>

> Hello everyone, I finally made the move with my children to NC, it was very

dramatic and the drama has managed to follow me, however on the plus side my son

who has AS/ADHD/Seizure Disorder is doing remarkable well and seems to really be

relaxed here. My boyfriend came to the house we rented and managed to go thru my

purse and find an application for an apartment here in NC, he then went thru my

emails and found where i had posted to you all and had sent some to my family,

he blew up and would not allow me to get my or my children's things so i managed

to call 911 to have someone assist me but they could not make him give me my

things any how i basically got a few of there things and our clothing but the

majority of our things included pictures of my children and family and artwork

the children have made over the years, got left behind, i then had to take my

children to the local women's shelter in PA, we were there for 2 days and then

made the move

> here. I went to the shelter on monday july20 and left for NC on july 22 and

recieved information by phone that last week someone reported to CYS that my son

has been fondling his 13 yr old sister, i of course was outraged and so is my

daughter, her response was i am sick of all these people telling lies. CYS in pa

of course referred us to children services here but no one has contacted me. IN

the meantime the man who so calls loves me so much and would do everything for

me and my children has continually emailed my mother saying some rather vulgar

things to her and blaming her for me leaving him. he sent her 14 emails

yesterday, she is saving them as i should have done with the ones he sent to me

because she said if children services contacts me i can show them what has been

going on. i wasnt thinking protection for me, the emails were a sign of giving

in to him and i felt in order to stay strong deleting was the best option, sorry

Roxanna the one thing

> you have always told us is to keep a paper trail for protection, my mind went

blank for the past 2 wks. I did get the 2 children signed up for school and feel

pretty confident school is going to be great for them, i am doing my best to

keep myself together but all this crap is putting added strain on me. Please

keep us in your prayers as we really need them at this time. sherry

>

[Guest guest]

Oh Sherry,

I don't know what to say. But,,,,,prayers are coming.

Robin

Normal is just a cycle on a washing machine!!

From: Sherry Burford <aspiemomone@...>Subject: ( ) update"SUPPORT GROUP" <Aspergers Treatment >Date: Wednesday, August 5, 2009, 4:21 PM

Hello everyone, I finally made the move with my children to NC, it was very dramatic and the drama has managed to follow me, however on the plus side my son who has AS/ADHD/Seizure Disorder is doing remarkable well and seems to really be relaxed here. My boyfriend came to the house we rented and managed to go thru my purse and find an application for an apartment here in NC, he then went thru my emails and found where i had posted to you all and had sent some to my family, he blew up and would not allow me to get my or my children's things so i managed to call 911 to have someone assist me but they could not make him give me my things any how i basically got a few of there things and our clothing but the majority of our things included pictures of my children and family and artwork the children have made over the years, got left behind, i then had to take my children to the local women's shelter in PA, we were there for 2 days and then made the

movehere. I went to the shelter on monday july20 and left for NC on july 22 and recieved information by phone that last week someone reported to CYS that my son has been fondling his 13 yr old sister, i of course was outraged and so is my daughter, her response was i am sick of all these people telling lies. CYS in pa of course referred us to children services here but no one has contacted me. IN the meantime the man who so calls loves me so much and would do everything for me and my children has continually emailed my mother saying some rather vulgar things to her and blaming her for me leaving him. he sent her 14 emails yesterday, she is saving them as i should have done with the ones he sent to me because she said if children services contacts me i can show them what has been going on. i wasnt thinking protection for me, the emails were a sign of giving in to him and i felt in order to stay strong deleting was the best option, sorry Roxanna the

one thingyou have always told us is to keep a paper trail for protection, my mind went blank for the past 2 wks. I did get the 2 children signed up for school and feel pretty confident school is going to be great for them, i am doing my best to keep myself together but all this crap is putting added strain on me. Please keep us in your prayers as we really need them at this time. sherry

[Guest guest]

>

>

> Hello everyone, I finally made the move with my children to NC, it was very

dramatic ...

It might help you if that doctor that stated to you that he/she didn't think

your son was capable of what he has been accused of would put that in a written

report. I had a neighbor I knew pretty well get accused of burning her son with

cigarettes by her hostile ex in-laws. He had a sickness, not chicken pox but

similar that that leaves scabs--they showed these to CPS and told them they were

cigarette burns. My neighbor brought the doctor's report of said illness to the

hearing and they dropped everything. There was more to it, of course, but I

think the doctor's reports are useful.

Good luck!

[Guest guest]

thanks alot i will do that. sherry

From: r_woman2 <me2ruth@...> Sent: Thursday, August 6, 2009 1:51:59 PMSubject: ( ) Re: update

>> > Hello everyone, I finally made the move with my children to NC, it was very dramatic ...It might help you if that doctor that stated to you that he/she didn't think your son was capable of what he has been accused of would put that in a written report. I had a neighbor I knew pretty well get accused of burning her son with cigarettes by her hostile ex in-laws. He had a sickness, not chicken pox but similar that that leaves scabs--they showed these to CPS and told them they were cigarette burns. My neighbor brought the doctor's report of said illness to the hearing and they dropped everything. There was more to it, of course, but I think the doctor's reports are useful.Good

luck!

[Guest guest]

Thanks Robin, the last 5months have been something else, now is time for change and peace hopefully it will arrive soon. sherry

From: and/or Robin Lemke <jrisjs@...> Sent: Thursday, August 6, 2009 1:24:47 PMSubject: Re: ( ) update

Oh Sherry,

I don't know what to say. But,,,,,prayers are coming.

Robin

Normal is just a cycle on a washing machine!!

From: Sherry Burford <aspiemomone>Subject: ( ) update"SUPPORT GROUP" <Aspergers Treatment>Date: Wednesday, August 5, 2009, 4:21 PM

Hello everyone, I finally made the move with my children to NC, it was very dramatic and the drama has managed to follow me, however on the plus side my son who has AS/ADHD/Seizure Disorder is doing remarkable well and seems to really be relaxed here. My boyfriend came to the house we rented and managed to go thru my purse and find an application for an apartment here in NC, he then went thru my emails and found where i had posted to you all and had sent some to my family, he blew up and would not allow me to get my or my children's things so i managed to call 911 to have someone assist me but they could not make him give me my things any how i basically got a few of there things and our clothing but the majority of our things included pictures of my children and family and artwork the children have made over the years, got left behind, i then had to take my children to the local women's shelter in PA, we were there for 2 days and then made the

movehere. I went to the shelter on monday july20 and left for NC on july 22 and recieved information by phone that last week someone reported to CYS that my son has been fondling his 13 yr old sister, i of course was outraged and so is my daughter, her response was i am sick of all these people telling lies. CYS in pa of course referred us to children services here but no one has contacted me. IN the meantime the man who so calls loves me so much and would do everything for me and my children has continually emailed my mother saying some rather vulgar things to her and blaming her for me leaving him. he sent her 14 emails yesterday, she is saving them as i should have done with the ones he sent to me because she said if children services contacts me i can show them what has been going on. i wasnt thinking protection for me, the emails were a sign of giving in to him and i felt in order to stay strong deleting was the best option, sorry Roxanna the

one thingyou have always told us is to keep a paper trail for protection, my mind went blank for the past 2 wks. I did get the 2 children signed up for school and feel pretty confident school is going to be great for them, i am doing my best to keep myself together but all this crap is putting added strain on me. Please keep us in your prayers as we really need them at this time. sherry

[Guest guest]

What is this and where do you get it? Thanks, Kristy

On Jan 12, 2010, at 10:29 AM, Robin Ketchem wrote:

> I am sorry I missed blogging for the past few days. We just found out

> one

> of our friends has cancer and we were at the hospital since they

> have 5

> children but no one is helping them; so we are helping them

> currently. He

> should be out of the hospital soon and I hope he will begin to use the

> Nutriiveda.

>

> Here are some recent notes on 's progress.

>

> Wow! I can't believe it has been over a month since first

> began

> using the Nutriiveda!! As many of you know that have followed Mel's

> blog,

> to say a lot has changed since then is an understatement as my 25 year

> old

> daughter has had a transformation before our eyes!! continues

> to do

> well on the Nutriiveda and all the changes we have seen so far have

> remained

> consistent.

>

> Last year I was trying to figure out how to keep healthy from

> her

> seizures. Since nutriiveda Mel has not had any seizures or even

> headaches

> and her doctor has give the go ahead to lower Mel's seizure meds which

> is so

> exciting for our family.

>

> While last year all we worried about were the seizures that put Mel in

> the

> hospital and almost killed our beautiful daughter, this year I am now

> trying

> to figure out communication for . We have all new goals to set,

> goals that we dreamed of years ago that are finally coming to

> fruition. Not

> only the seizures- just about everything that I worried about last

> year is

> gone as Mel no longer is content to sit back and let the world help

> her do

> everything while she watches silently, Mel wants to talk and be an

> active

> part of this world so all my past worries are replaced by one single

> worry.

> How do we get to communicate given her past history? I know I

> should be grateful for all the remarkable changes that has

> made, and

> I am grateful. but now I want more for and as far as I know

> who can

> help her? How many other 25 year olds are there out there that all

> of a

> sudden have had dramatic changes in who they are? It's like Mel has

> come

> out of a coma to put it in perspective to one who doesn't know her to

> see

> the difference. She doesn't want to be viewed as a child but in many

> ways

> the stages she appears to be going through are those that she should

> have

> gone through decades ago.

>

> I want to be able to communicate, to go back to school, the

> right

> way this time, and begin studying once again. I want to have

> a life

> that I know is possible for her, and I know that is what she wants

> too, but

> it all needs to begin with communication.

>

> So while last year the list of our worries were so long and I worried

> about

> seizures and who would care for Mel if I wasn't around, this year I'm

> looking at my daughter who is fighting to be independent, who is

> fighting to

> learn and grow. Who is wanting to be a woman but who is still in many

> ways

> going through stages she never did as a child. In my heart I know the

> greatest hurdle however is what is the best way to help right

> now

> with who she is? Who will understand where she was before and why just

> adding nutriiveda to her diet in these past few weeks has made such a

> profound impact? I know reading this it sounds too good to be true,

> and

> again that's how it feels to us, but this is what is really happening

> in our

> lives, in Mel's life.

[Guest guest]

Kristy,

NutriiVeda is a meal replacement powder that was designed as a weight

management tool. It naturally manages the body's fat usage, detoxifies the

body, and helps to gain, lose, or stabilize weight as needed. ( & many other

healthy benefits) It is based on the amalaki berry and several other

botanicals. It is gluten & casein free. It is an all natural source of

over 22 vitamins and minerals, 20 amino acids, high quality protein, and

soluble fiber-nutrients often missing in our diet.

discovered the side benefits of NV w/ her son, Tanner, when she put him

on it for weight loss. Then, he demonstrated gains in speech clarity,

reading interest/comprehension, etc.! Then, 's mom Robyn tried it

w/her family w/amazing results w/Mel. Read her blog:

http://www.pursuitofresearch.org NV is organic, gluten free, casein free,

endorsed

by Deepak Chopra, and made based on ayuvedic principles. It has 8 botanicals

--but amalaki is the primary one.

introduced to this list primarily so that parents & therapists who are

not working out enough or eating well could drink it to get/be healthy. Then

several kids started to try it (, Matt, etc).

Here is the dosage by age: For kids under 4yrs, 1 scoop/day; 4-8 yrs 2

scoops/day; 9+yrs 4 scoops/day.

Please email or call me with any other questions or to order. It is $87.50

for 2 cans which contain 30 scoops per can.

I am drinking it and love it!

Barbara

Warmest wishes,

Barbara

Barbara A. , M.S., CCC-SLP

Executive Director/ Help Me Speak, LLC

<http://www.helpmespeak.com/> http://www.helpmespeak.com

(o) 410-442-9791 (f) 410-442-9783

2500 Wallington Way; Suite 103

Marriottsville, MD 21104

follow us on FaceBook:

http://www.facebook.com/pages/Marriottsville-MD/Help-Me-Speak-LLC/1046288520

32

Call me for more info about NutriiVeda!!

From:

[mailto: ] On Behalf Of Kristy

Sent: Tuesday, January 12, 2010 12:03 PM

Subject: Re: [ ] Update

What is this and where do you get it? Thanks, Kristy

On Jan 12, 2010, at 10:29 AM, Robin Ketchem wrote:

> I am sorry I missed blogging for the past few days. We just found out

> one

> of our friends has cancer and we were at the hospital since they

> have 5

> children but no one is helping them; so we are helping them

> currently. He

> should be out of the hospital soon and I hope he will begin to use the

> Nutriiveda.

>

> Here are some recent notes on 's progress.

>

> Wow! I can't believe it has been over a month since first

> began

> using the Nutriiveda!! As many of you know that have followed Mel's

> blog,

> to say a lot has changed since then is an understatement as my 25 year

> old

> daughter has had a transformation before our eyes!! continues

> to do

> well on the Nutriiveda and all the changes we have seen so far have

> remained

> consistent.

>

> Last year I was trying to figure out how to keep healthy from

> her

> seizures. Since nutriiveda Mel has not had any seizures or even

> headaches

> and her doctor has give the go ahead to lower Mel's seizure meds which

> is so

> exciting for our family.

>

> While last year all we worried about were the seizures that put Mel in

> the

> hospital and almost killed our beautiful daughter, this year I am now

> trying

> to figure out communication for . We have all new goals to set,

> goals that we dreamed of years ago that are finally coming to

> fruition. Not

> only the seizures- just about everything that I worried about last

> year is

> gone as Mel no longer is content to sit back and let the world help

> her do

> everything while she watches silently, Mel wants to talk and be an

> active

> part of this world so all my past worries are replaced by one single

> worry.

> How do we get to communicate given her past history? I know I

> should be grateful for all the remarkable changes that has

> made, and

> I am grateful. but now I want more for and as far as I know

> who can

> help her? How many other 25 year olds are there out there that all

> of a

> sudden have had dramatic changes in who they are? It's like Mel has

> come

> out of a coma to put it in perspective to one who doesn't know her to

> see

> the difference. She doesn't want to be viewed as a child but in many

> ways

> the stages she appears to be going through are those that she should

> have

> gone through decades ago.

>

> I want to be able to communicate, to go back to school, the

> right

> way this time, and begin studying once again. I want to have

> a life

> that I know is possible for her, and I know that is what she wants

> too, but

> it all needs to begin with communication.

>

> So while last year the list of our worries were so long and I worried

> about

> seizures and who would care for Mel if I wasn't around, this year I'm

> looking at my daughter who is fighting to be independent, who is

> fighting to

> learn and grow. Who is wanting to be a woman but who is still in many

> ways

> going through stages she never did as a child. In my heart I know the

> greatest hurdle however is what is the best way to help right

> now

> with who she is? Who will understand where she was before and why just

> adding nutriiveda to her diet in these past few weeks has made such a

> profound impact? I know reading this it sounds too good to be true,

> and

> again that's how it feels to us, but this is what is really happening

> in our

> lives, in Mel's life.

[Guest guest]

I would like to try some of this. Will it make my son lose weight, he is lean

and tall, but is severly apraxic. I may try it as well for weight loss.

Sent from my BlackBerry Smartphone provided by Alltel

Re: [ ] Update

What is this and where do you get it? Thanks, Kristy

On Jan 12, 2010, at 10:29 AM, Robin Ketchem wrote:

> I am sorry I missed blogging for the past few days. We just found out

> one

> of our friends has cancer and we were at the hospital since they

> have 5

> children but no one is helping them; so we are helping them

> currently. He

> should be out of the hospital soon and I hope he will begin to use the

> Nutriiveda.

>

> Here are some recent notes on 's progress.

>

> Wow! I can't believe it has been over a month since first

> began

> using the Nutriiveda!! As many of you know that have followed Mel's

> blog,

> to say a lot has changed since then is an understatement as my 25 year

> old

> daughter has had a transformation before our eyes!! continues

> to do

> well on the Nutriiveda and all the changes we have seen so far have

> remained

> consistent.

>

> Last year I was trying to figure out how to keep healthy from

> her

> seizures. Since nutriiveda Mel has not had any seizures or even

> headaches

> and her doctor has give the go ahead to lower Mel's seizure meds which

> is so

> exciting for our family.

>

> While last year all we worried about were the seizures that put Mel in

> the

> hospital and almost killed our beautiful daughter, this year I am now

> trying

> to figure out communication for . We have all new goals to set,

> goals that we dreamed of years ago that are finally coming to

> fruition. Not

> only the seizures- just about everything that I worried about last

> year is

> gone as Mel no longer is content to sit back and let the world help

> her do

> everything while she watches silently, Mel wants to talk and be an

> active

> part of this world so all my past worries are replaced by one single

> worry.

> How do we get to communicate given her past history? I know I

> should be grateful for all the remarkable changes that has

> made, and

> I am grateful. but now I want more for and as far as I know

> who can

> help her? How many other 25 year olds are there out there that all

> of a

> sudden have had dramatic changes in who they are? It's like Mel has

> come

> out of a coma to put it in perspective to one who doesn't know her to

> see

> the difference. She doesn't want to be viewed as a child but in many

> ways

> the stages she appears to be going through are those that she should

> have

> gone through decades ago.

>

> I want to be able to communicate, to go back to school, the

> right

> way this time, and begin studying once again. I want to have

> a life

> that I know is possible for her, and I know that is what she wants

> too, but

> it all needs to begin with communication.

>

> So while last year the list of our worries were so long and I worried

> about

> seizures and who would care for Mel if I wasn't around, this year I'm

> looking at my daughter who is fighting to be independent, who is

> fighting to

> learn and grow. Who is wanting to be a woman but who is still in many

> ways

> going through stages she never did as a child. In my heart I know the

> greatest hurdle however is what is the best way to help right

> now

> with who she is? Who will understand where she was before and why just

> adding nutriiveda to her diet in these past few weeks has made such a

> profound impact? I know reading this it sounds too good to be true,

> and

> again that's how it feels to us, but this is what is really happening

> in our

> lives, in Mel's life.

[Guest guest]

If my son Dakota lost any weight he'd blow away at this point! I'm giving him

the nutriiveda for good nutrition because he doesn't eat his lunch -or eat well

even when he does eat breakfast or dinner. And...because a number of my

friend's children who are ADHD who went on it to lose weight (all teens)

suddenly became straight A students. I would really like a professional who is

interested in interviewing the families of these ADHD students to figure

something out with the ADHD too because it's almost eerie how this appears to

work in this area as well. And also my mom who is GFCF and doesn't eat well or

enough due to her food allergies and intolerances has gained weight on the

nutriiveda but needed too and she said she " doesn't know where all this energy

is coming from " (food)

If you want to see me and some of my friends that lost weight

http://www.nutraeasy.com I even lost 8 pounds and went from a size 4 to a size

2!!!!

(easily- and I've never felt better -this stuff is amazing)

My neighbor Laurie who is the pro golfer in the one commercial told me to shut

up and I'm not allowed to mention anything below a size 8 -but she lost 30 -35

pounds in 2 months!!

Anyway -you don't have to use it as meal replacement -you can use it with meals

too -mix it into food (but don't cook with it). Hope that helps!

=====

[Guest guest]

Hi Kathy,

Maybe the scan at various levels isn't really a great idea - the numbers can be

confusing. At level 3 his numbers are great. I'm not really sure how significant

the level 5 numbers are since I think that is a " slice " of the very top of his

head. It probably doesn't make much sense to focus on this area. I think if I

did this with my daughter her level 5 numbers would be pretty bad too since her

remaining problem areas are at the top of her head. However, real people don't

look at heads the way we plagio/brachy moms do :-)

I'm not sure how his head looks now, but from what you've written I think I

would strongly consider getting rid of the band at this point. He's been in it a

long time. If you want to share photos, I would be happy to give you an opinion

based on that. My daughter was in her band for 5 mo. I probably could have

considered a 2nd band, but even though her head is not perfect, I also really

enjoyed being done with all that.

-christine

sydney, 4 yrs, starband grad

>

> Hi,

>

>

> 's scan showed a slight improvement since his last scan almost two

> months ago. Unfortunately, I believe visually the rate of improvement

> has slowed since early Jan, but 's head has continued to very slowly

> improve.

>

> At level 3, I now consider 's head borderline normal. His

> measurements are approximately 2mm asymetry with a brachy measurement of

> 83. His head looks okay at the lower levels.

>

> Unfortunately, the upper levels have not shown as much improvement the

> past few months. At level 5, the asymetry remained at 3.5mm. It is the

> upper levels that still bother me. I believe the worse area may be

> higher than level 5. The contour showed a sliver of filling in on the

> flat area behind the right ear at level 5. At this point, any

> improvement might not show up on scans due to variation from measurement

> error. I hope it is not too late for more visual improvement up high!

>

> The ortho cut out a big area for the ears, so I no longer need to worry

> about it hitting the ears. (Maybe, he reads these posts.)

>

> He said we can take the helmet off or come back in 2 months for another

> adjustment. We will keep the helmet on since the upper part still

> bothers me.

>

> I'm keeping up with the weekly chiro visits. Unfortunately, we haven't

> been able to get in to the osteopath since the first week of Jan.

> He was on vacation and then he had the flu. I'm extremely bummed about

> this! I've been hoping he can help with the remaining area and we are

> running out of time.

>

>

> -Kathy, mom to 20.5 months, 8.5 months in Starband

>

[Guest guest]

Hi,

Thanks.  Also, in addition to more errors, it could be that normal

range for asymmetry at level 5 is higher than at level 3.  Does anyone

know?  I've read that 2mm or 3mm is normal for level 3.  It really

helps mentally to know that 's head got to normal at level 3. 

ly, I did not expect that, especially after the improvement in the

helmet was so slow in the beginning.  I thought for sure the

improvement would only slow as aged, but it didn't until after 19

months, and it is still improving.  Up high 's head still visually

bothers me and the improvement there has been slower than down low

lately.

I believe 's head looks okay to most people except me now.  A

couple weeks ago my husband became satisfied with 's head.  He

wants to keep the helmet though, since he understands that I'm more

sensitive to the plagio.    (Also, I'm slightly worried about

regression since still turns his head right while sleeping.)

Today I was surprised when the chiro told me she felt a very tiny soft

spot left.  She hadn't been feeling it lately and I thought it had

closed.

-Kathy, mom to , 20.5 months, banded with Starband at 12 months

christineashok wrote:

 

Hi Kathy,

Maybe the scan at various levels isn't really a great idea - the

numbers can be confusing. At level 3 his numbers are great. I'm not

really sure how significant the level 5 numbers are since I think that

is a "slice" of the very top of his head. It probably doesn't make much

sense to focus on this area. I think if I did this with my daughter her

level 5 numbers would be pretty bad too since her remaining problem

areas are at the top of her head. However, real people don't look at

heads the way we plagio/brachy moms do :-)

I'm not sure how his head looks now, but from what you've written I

think I would strongly consider getting rid of the band at this point.

He's been in it a long time. If you want to share photos, I would be

happy to give you an opinion based on that. My daughter was in her band

for 5 mo. I probably could have considered a 2nd band, but even though

her head is not perfect, I also really enjoyed being done with all that.

-christine

sydney, 4 yrs, starband grad

>

> Hi,

>

>

> 's scan showed a slight improvement since his last scan almost

two

> months ago. Unfortunately, I believe visually the rate of

improvement

> has slowed since early Jan, but 's head has continued to very

slowly

> improve.

>

> At level 3, I now consider 's head borderline normal. His

> measurements are approximately 2mm asymetry with a brachy

measurement of

> 83. His head looks okay at the lower levels.

>

> Unfortunately, the upper levels have not shown as much improvement

the

> past few months. At level 5, the asymetry remained at 3.5mm. It is

the

> upper levels that still bother me. I believe the worse area may be

> higher than level 5. The contour showed a sliver of filling in on

the

> flat area behind the right ear at level 5. At this point, any

> improvement might not show up on scans due to variation from

measurement

> error. I hope it is not too late for more visual improvement up

high!

>

> The ortho cut out a big area for the ears, so I no longer need to

worry

> about it hitting the ears. (Maybe, he reads these posts.)

>

> He said we can take the helmet off or come back in 2 months for

another

> adjustment. We will keep the helmet on since the upper part still

> bothers me.

>

> I'm keeping up with the weekly chiro visits. Unfortunately, we

haven't

> been able to get in to the osteopath since the first week of

Jan.

> He was on vacation and then he had the flu. I'm extremely bummed

about

> this! I've been hoping he can help with the remaining area and we

are

> running out of time.

>

>

> -Kathy, mom to 20.5 months, 8.5 months in Starband

>

[Guest guest]

Wow, that is amazing! How old is your son?

I don't think my 5.5 year old has improved much, if at all, since an

infant, just his hair covers it better. When he was an infant, we knew

about the flattening, but were told it would round out. We did not

connect the smaller left eye to the plagio, and I still think the eye

came first. My son's hair grew in and we forgot about it until

recently when my younger son was diagnosed with plagio. Now we realize

my older son still has the mild plagio and his head is shaped about the

same as it was 5 years ago, just bigger. We only did a half attempt at

repositioning when my son was a few months old, but since then he

usually has not slept on the flat area.

Best,

Kathy, mom to 23 months and 5.5 years

teresa_dee_brown wrote:

hi all,

i have not been in here in years! just got a message letting me know

new photos were posted, so i thought i would give an update.

DS2 had torticollis, resulting in plagio.

his ear shifted, his forehead and cheek bulged and his eye was squashed

up a little. at the time i was VERY stressed about it, but here in NZ

the only thing they do is repositioning. anyone who looked at him

commented on it, so it wasn't just us that noticed it! it was pretty

bad!

2 years on, i have to say that DS2 looks fine. it is still noticeable

to us as family, when his hair is wet, but he is largely improved and

it took 'no more' than vigorous efforts on our behalf to keep him off

his head as much as possible (using methods you find on the tort pages)

lots of physio for his neck, and time. his eyesight is still being

monitored (he likes to hold things close, and stand with his nose

almost to the TV!!), but at this stage we have been told it is ok.

so that is just some encouragement for anyone out there who may be

worried they don't have access to the bands that other

countries/families use.

[Guest guest]

wow, such great news!  so happy for you and your family.

sandy

________________________________

From: Alyssa Nagy <aw_nagy@...>

Sent: Mon, May 10, 2010 7:33:01 PM

Subject: [ ] update

 

Hello,

I like to keep everyone posted every couple of weeks on 's progress so

far on NV.  We are now working through our 14th week of being seizure free!!!

Yes, you heard me right 14 wks!  For those who have not followed us has

never gone longer than 24 days w/o a seizure.  I also spoke with several

weeks ago and ever since I have re added into 's diet Omega fatty

acids.  I just squeeze them into his NV and mix away..

Today is 's second day on his second drop in medication dosage.  I am a

bit nervous but feeling optimistic about his new found seizure control.  And

lastly, his behaviors have seems to level off a bit.  I think the addition of

Omega's might be helping.

What a great feeling to be onto this new healthy alternative. ..

Smiles,

Alyssa

[Guest guest]

Congrats!

>

> Hello,

> I like to keep everyone posted every couple of weeks on 's progress so

far on NV. We are now working through our 14th week of being seizure free!!!

Yes, you heard me right 14 wks! For those who have not followed us has

never gone longer than 24 days w/o a seizure. I also spoke with several

weeks ago and ever since I have re added into 's diet Omega fatty acids.

I just squeeze them into his NV and mix away..

> Today is 's second day on his second drop in medication dosage. I am a

bit nervous but feeling optimistic about his new found seizure control. And

lastly, his behaviors have seems to level off a bit. I think the addition of

Omega's might be helping.

> What a great feeling to be onto this new healthy alternative...

> Smiles,

> Alyssa

>

>

>

>

>

[Guest guest]

Amy,

have you had a chest x-ray done? I waited  some time before I had it done and

ended up with pneumonia. I went to a pulmonary doctor who finally did a

bronchoscopy and I found out I have interstitial pulmonary fibrosis which is RA

related. so please don't wait too long to get this checked. What helped with the

chest pain was a heating pad. I slept with it for three months. I bought one

that automatically turns off after a few hours. I have RA and dermatomyositis,

which is what causes the muscle weakness. I am on the road to recovery. I have

been on antibiotics for 30 months now. Off all the stuff the rheumatologist has

given me. Yes, I do take lots of vitamins, minerals and probiotics.

Hope you will feel better soon,

Eva

From: Amy and Jay Willis <tknbychance26@...>

Subject: rheumatic Update

OurMyositis , ,

rheumatic , dermatomyositissupport ,

lupies

Date: Tuesday, June 8, 2010, 3:19 PM

 

I am still waiting on my lab results...is it normal for them to take 2 weeks to

come back? I know he was checking some muscle enzymes, Vit D and I'm not sure

what else. I am still taking 400 mg Plaquenil and 20 mg Prenisone daily. I've

also started taking B12 sublingually, magnesium, Vitamin D liquid, B Complex

sublingually, and Calcium. The muscle cramps are definitely better thank

goodness!! My toes have not curled up in a few days now. The static feeling is

still there off and on. The muscle weakness seems to be coming back as well as

the joint pain and the rash on my scalp, face and chest. The chest pain is

better, it doesn't hurt as bad when I take breaths but my ribs and sternum are

painful to the touch.

I hope they call with my results soon! I'm curious to see what the next step is.

I want to thank everyone for the support and advice, it is greatly appreciated!!

Amy

" Success is not measured by what you accomplish but by the opposition you have

encountered, and the courage with which you have maintained the struggle against

overwhelming odds. " ~Orison Swett Marden

[Guest guest]

When I was starting on mtx, plaquenil, and prednisone every month I got worse.

And every month my rheumy's solution was to up my meds.

The day I took 8 mtx pills I felt like I was knockin on heavens door. Called my

rheumy and he told me to take more colic acid!!! I stopped taking everything and

never saw him again.

And after I stopped taking the meds I felt better than I had in a long time! My

swelling went down too.

Unfortunately it was short lived and I was soon just as bad as before ... So yes

it happens. I hope the improvement lasts for you!

Candace

Sent from my iPhone

On Jun 12, 2010, at 12:44 AM, " matygirl3 " <matygirl3@...> wrote:

Is that strange to be less swollen being off the meds than when I was on them?

Just wondering if there were any thoughts on that.

Maty

[Guest guest]

Hi Candace - have you ever asked your Rheumy about taking the MTX injections

rather than the pills? I switched quite a while ago now and I can comfortably

say that the injections are much better. No stomach upset and the fuzziness only

lasts one or two days rather than the three or more from the pills. Best of luck

to you. Please keep us updated.....Doreen

When I was starting on mtx, plaquenil, and prednisone every month I got worse.

And every month my rheumy's solution was to up my meds.

The day I took 8 mtx pills I felt like I was knockin on heavens door. Called my

rheumy and he told me to take more colic acid!!! I stopped taking everything and

never saw him again.

And after I stopped taking the meds I felt better than I had in a long time! My

swelling went down too.

Unfortunately it was short lived and I was soon just as bad as before ... So yes

it happens. I hope the improvement lasts for you!

Candace