Kim

[Guest guest]

Kim,

I had to laugh with your ear story. I think maybe when we took her to

the hsp. it was the beginning and maybe nothing was noticeable then.

She has only complained of a sore ear once today and no fever. I took

them to a birthday party today, 2 hours in a video arcade, all games

free. I had a ball let alone the kids. I found out I'm no good skiing,

motor bike riding or even racing in Daytona, I came last in all of them

Lol!

(Australia)

Re: results

Dear ,

I'm so happy to find an update about Eilish, and I'm glad your doctor

found the cause.

We've had some screw ups with our emergency room doctors too... but

reading Eilish's experience, I'm convinced that some people are very

sensitive to what's going on in their bodies even before medical

personnel can " see " it -- and also, I wonder if sometimes ear problems

just take a while to fully manifest themselves.

The summer I was 14-years old, I became very ill: severe left ear

pain, dizziness, vomiting, fevers hovering around 99 F (I tried

converting that to degrees centigrade for you but failed horribly. My

kids and I have a normal temp of 97.6, so when any of us hit 99, we

feel awful.)

My mom took me to our GP but he couldn't find anything wrong; he said

it was probably a virus. Later, she took me to the emergency room;

same story, must be a virus. During a two-week time span I saw my GP

twice, and went to the ER twice, and I lost over 15 pounds because I

couldn't keep anything down. I remember those two weeks, just lying

weak as a kitten on the living room rug watching the ceiling spin,

crying hot tears that trickled down into my painful ear, and vomiting

green bile whenever I ate or moved too quickly.

Finally, on my third visit to the GP, he looked in my left ear again

and this time said, " Ahhh, hah. " He told my mom there was a cyst

growing on my ear drum. He told me to hold still, and he lanced the

cyst then gave me a shot of penicillin in the rump; I fainted dead

away to the floor. He sent me home with a prescription for more

penicillin and I quickly got better.

The doctor told my mom that of course they knew now that the cyst had

brewing all this time but just wasn't yet big enough for anyone to

see. And because my eardrum never looked inflammed no one suspected an

infection.

I'm wondering if something similar happened to Eilish -- her body was

sensitive to the beginning of a middle ear infection, but it just

hadn't turned her eardrum pink enough to confirm the diagnosis until

she saw her GP.

My ears and sinuses are still sensitive creatures. I have to take high

doses (1,000 mg.) of guaifenesin starting about 3 days before I fly,

and 3 days after flying to prevent sinus and ear infections.

One time I'd sat up all night with dizziness, fever, and the feeling

my ear drum was bulging down the canal. In the morning I went to my

GP's office but he was out, so his associate saw me; that doctor

wasn't familiar with my long history or ear problems. He took one look

in my ear and I swear he was going to bolt straight for the door. I

begged him to lance the ear drum before it ruptured. I figured a

straight cut from a lance would heal better than the jagged tear of a

rupture, but he wouldn't touch my eardrum.

Anyway, I'm happy Eilish is doing better and will be able to enjoy the

family Harry Potter outing today!

Kim

Mom to (23 with asthma and cf) and (20 asthma no cf)

Eilish's Gp, who is a lovely guy, said he didn't think she had

glandular fever. He check her ears and said she had a bad middle ear

infection. The hsp. checked her ears on Tuesday night and said they

were fine. HE asked what antibiotics we had at home seeing we always

have a stockpile and said to start her on Cipro. but only half the

does she takes for PA. Anyway she has been fine today. He said her

temps. were due to the infection. IF only the hsp. had said that 3

days ago we could be on the recovery rd. So ive just been to the

school pool/fitness complex and bought her ear plugs for swimming.

She swims alot so that probably doesnt help her ears but is good for

her lungs. She sees the ENT guy Tuesday so UI'll mention to him about

all this. Thanks for listening all week.

Were now off the see Harry Potter and the Chamber of Secrets. Liam

has been reading the novel and frantically had to finish it last night

before we went to see the movie today. He tells everyone " I know

who opened the chamber of secrets " . We all love H.P and cant wait to

see it. Liams going in his HP Robe with glasses and wand and Eilish

is wearing a Gryffindor top.

(Australia)

>

>

>

>

[Guest guest]

Kim,

I had to laugh with your ear story. I think maybe when we took her to

the hsp. it was the beginning and maybe nothing was noticeable then.

She has only complained of a sore ear once today and no fever. I took

them to a birthday party today, 2 hours in a video arcade, all games

free. I had a ball let alone the kids. I found out I'm no good skiing,

motor bike riding or even racing in Daytona, I came last in all of them

Lol!

(Australia)

Re: results

Dear ,

I'm so happy to find an update about Eilish, and I'm glad your doctor

found the cause.

We've had some screw ups with our emergency room doctors too... but

reading Eilish's experience, I'm convinced that some people are very

sensitive to what's going on in their bodies even before medical

personnel can " see " it -- and also, I wonder if sometimes ear problems

just take a while to fully manifest themselves.

The summer I was 14-years old, I became very ill: severe left ear

pain, dizziness, vomiting, fevers hovering around 99 F (I tried

converting that to degrees centigrade for you but failed horribly. My

kids and I have a normal temp of 97.6, so when any of us hit 99, we

feel awful.)

My mom took me to our GP but he couldn't find anything wrong; he said

it was probably a virus. Later, she took me to the emergency room;

same story, must be a virus. During a two-week time span I saw my GP

twice, and went to the ER twice, and I lost over 15 pounds because I

couldn't keep anything down. I remember those two weeks, just lying

weak as a kitten on the living room rug watching the ceiling spin,

crying hot tears that trickled down into my painful ear, and vomiting

green bile whenever I ate or moved too quickly.

Finally, on my third visit to the GP, he looked in my left ear again

and this time said, " Ahhh, hah. " He told my mom there was a cyst

growing on my ear drum. He told me to hold still, and he lanced the

cyst then gave me a shot of penicillin in the rump; I fainted dead

away to the floor. He sent me home with a prescription for more

penicillin and I quickly got better.

The doctor told my mom that of course they knew now that the cyst had

brewing all this time but just wasn't yet big enough for anyone to

see. And because my eardrum never looked inflammed no one suspected an

infection.

I'm wondering if something similar happened to Eilish -- her body was

sensitive to the beginning of a middle ear infection, but it just

hadn't turned her eardrum pink enough to confirm the diagnosis until

she saw her GP.

My ears and sinuses are still sensitive creatures. I have to take high

doses (1,000 mg.) of guaifenesin starting about 3 days before I fly,

and 3 days after flying to prevent sinus and ear infections.

One time I'd sat up all night with dizziness, fever, and the feeling

my ear drum was bulging down the canal. In the morning I went to my

GP's office but he was out, so his associate saw me; that doctor

wasn't familiar with my long history or ear problems. He took one look

in my ear and I swear he was going to bolt straight for the door. I

begged him to lance the ear drum before it ruptured. I figured a

straight cut from a lance would heal better than the jagged tear of a

rupture, but he wouldn't touch my eardrum.

Anyway, I'm happy Eilish is doing better and will be able to enjoy the

family Harry Potter outing today!

Kim

Mom to (23 with asthma and cf) and (20 asthma no cf)

Eilish's Gp, who is a lovely guy, said he didn't think she had

glandular fever. He check her ears and said she had a bad middle ear

infection. The hsp. checked her ears on Tuesday night and said they

were fine. HE asked what antibiotics we had at home seeing we always

have a stockpile and said to start her on Cipro. but only half the

does she takes for PA. Anyway she has been fine today. He said her

temps. were due to the infection. IF only the hsp. had said that 3

days ago we could be on the recovery rd. So ive just been to the

school pool/fitness complex and bought her ear plugs for swimming.

She swims alot so that probably doesnt help her ears but is good for

her lungs. She sees the ENT guy Tuesday so UI'll mention to him about

all this. Thanks for listening all week.

Were now off the see Harry Potter and the Chamber of Secrets. Liam

has been reading the novel and frantically had to finish it last night

before we went to see the movie today. He tells everyone " I know

who opened the chamber of secrets " . We all love H.P and cant wait to

see it. Liams going in his HP Robe with glasses and wand and Eilish

is wearing a Gryffindor top.

(Australia)

>

>

>

>

[Guest guest]

Kim,

Thank you.

[Guest guest]

Kim,

Thank you.

[Guest guest]

Kim,

Thank you.

[Guest guest]

Hi Kim

I'm also a reader of the ON site! I had my hips bilaterally resurfaced by Mr

Treacy here in England on 20th August last year. I have avn 100% over both

femoral heads and only just got to see Mr Treacy in time. The operation

appears to have gone splendidly but unfortunately I now seem to be having

problems

with my left knee. I felt my recovery was a little slow but well worth the

wait. I even just about managed to cut my own toenails the other day

(celebrate!!!) I have to say I really like the idea of buying extra time before

needing

a total hip replacement (if ever). The only things I've been told not to do

are to run and to fall.

Good luck with it all and feel free to email me if you like/

Love Lucy

30 years

bilateral resurfacing 20/08/03

[Guest guest]

Hi Kim

I'm also a reader of the ON site! I had my hips bilaterally resurfaced by Mr

Treacy here in England on 20th August last year. I have avn 100% over both

femoral heads and only just got to see Mr Treacy in time. The operation

appears to have gone splendidly but unfortunately I now seem to be having

problems

with my left knee. I felt my recovery was a little slow but well worth the

wait. I even just about managed to cut my own toenails the other day

(celebrate!!!) I have to say I really like the idea of buying extra time before

needing

a total hip replacement (if ever). The only things I've been told not to do

are to run and to fall.

Good luck with it all and feel free to email me if you like/

Love Lucy

30 years

bilateral resurfacing 20/08/03

[Guest guest]

Hi Kim

I'm also a reader of the ON site! I had my hips bilaterally resurfaced by Mr

Treacy here in England on 20th August last year. I have avn 100% over both

femoral heads and only just got to see Mr Treacy in time. The operation

appears to have gone splendidly but unfortunately I now seem to be having

problems

with my left knee. I felt my recovery was a little slow but well worth the

wait. I even just about managed to cut my own toenails the other day

(celebrate!!!) I have to say I really like the idea of buying extra time before

needing

a total hip replacement (if ever). The only things I've been told not to do

are to run and to fall.

Good luck with it all and feel free to email me if you like/

Love Lucy

30 years

bilateral resurfacing 20/08/03

[Guest guest]

Kim,

I don't have those kind of answers myself. I am scratching my head, just like

everyone else here. I come off as strongly opinionated, I have confidence from

the measures I have taken with my sons, but I don't know.

If I were to have another baby, I would try to plan it at least a year ahead

of time. I would get in the best physical shape exercise wise, make sure I have

taken care of any leaky gut issues of my own, which I believe also can

complicate matters in utero.

I would find the best source drinking water. I would run hepa filters in my

home. I would be (well am) fun a chemical free household. I would be SCD 100%. I

would take digestive enzymes, probiotics. I would limit eating sea food, if at

all. I would increase my omega 3's to 6. I would optimize the diet. I would not

allow the doctors to inject hepatitus b vaccine the day after birth. I would

stay active in pregnancy, every day with something like yoga, because when the

body is exercised, it helps blood flow and elimination of toxins from the fetus.

Basically, I would handle the pregnancy like I hand my own sons, with kid

gloves.

All these things will contribute, hopefully, to a baby that is born with an

immune system that has a chance to develop. I would be very careful to

breastfeed, and in choosing diapers, which contain some nasty chemicals. Rather

then treat yeast infections with stuff like Nystatin, like we used to do, I

would work on identifying the triggers ie food.

Ben, was born a premie, but it wasn't until he was vaccinated with MMR at 8

months, that everything fell apart for him, instantly starting years of non-stop

diarhea and all that. Since SCD and enzymes have cleared up his infection, I now

think, if he had not received that vaccine, and was on SCD/enzymes, and I had a

grip at that age on diet allergies/sensitivities, he would not have developed

the problems he had. If the immune system cannot develop properly, sure as heck

a vaccination is not going to be very useful. The few diptheria outbreaks I have

seen the last few years in the Pacific Northwest are evidence of that. Over 95%

of those children who got sick had been fully vaccinated.

Kim, this is what I would do at least. I would be very careful and research

any drugs or anything a doctor prescribes for you while pregnant, or your baby

afterwards.

Summer

" Witkowicz, [DPYUS] " kwitkowi@...> wrote:

Summer,

We also have no history of ASD in our family or my

husbands.(to our knowledge). I wonder all the time where this came from and

why did it happen to our son. We are very concerned that if we have a

second child he/she will be on the spectrum too. We will do all we can to

try and prevent it, but if it's genetic then what can we do?

-Kim

Mom to Noah 2 1/2 yrs old, ASD, SCD 26months

Research is showing that metals like mercury, lead, cadmium and arsenic

can change DNA, as they have mutagenic properties on cells. Especially liver

and immune cells. And we all know, the first metal exposure causes upheavals

in the intestinal flora and suppresses the immune system. So a new

susceptability is being passed down. It is not strictly genetic, it is DNA

Damage.

Just wanted to give another spin on this theory. While autism would seem

genetic in our small family history, it exists no where else in the older

generations, like a ton of people. There is a genetic link, a new kind, I

think.

Summer

[Guest guest]

Kim,

I don't have those kind of answers myself. I am scratching my head, just like

everyone else here. I come off as strongly opinionated, I have confidence from

the measures I have taken with my sons, but I don't know.

If I were to have another baby, I would try to plan it at least a year ahead

of time. I would get in the best physical shape exercise wise, make sure I have

taken care of any leaky gut issues of my own, which I believe also can

complicate matters in utero.

I would find the best source drinking water. I would run hepa filters in my

home. I would be (well am) fun a chemical free household. I would be SCD 100%. I

would take digestive enzymes, probiotics. I would limit eating sea food, if at

all. I would increase my omega 3's to 6. I would optimize the diet. I would not

allow the doctors to inject hepatitus b vaccine the day after birth. I would

stay active in pregnancy, every day with something like yoga, because when the

body is exercised, it helps blood flow and elimination of toxins from the fetus.

Basically, I would handle the pregnancy like I hand my own sons, with kid

gloves.

All these things will contribute, hopefully, to a baby that is born with an

immune system that has a chance to develop. I would be very careful to

breastfeed, and in choosing diapers, which contain some nasty chemicals. Rather

then treat yeast infections with stuff like Nystatin, like we used to do, I

would work on identifying the triggers ie food.

Ben, was born a premie, but it wasn't until he was vaccinated with MMR at 8

months, that everything fell apart for him, instantly starting years of non-stop

diarhea and all that. Since SCD and enzymes have cleared up his infection, I now

think, if he had not received that vaccine, and was on SCD/enzymes, and I had a

grip at that age on diet allergies/sensitivities, he would not have developed

the problems he had. If the immune system cannot develop properly, sure as heck

a vaccination is not going to be very useful. The few diptheria outbreaks I have

seen the last few years in the Pacific Northwest are evidence of that. Over 95%

of those children who got sick had been fully vaccinated.

Kim, this is what I would do at least. I would be very careful and research

any drugs or anything a doctor prescribes for you while pregnant, or your baby

afterwards.

Summer

" Witkowicz, [DPYUS] " kwitkowi@...> wrote:

Summer,

We also have no history of ASD in our family or my

husbands.(to our knowledge). I wonder all the time where this came from and

why did it happen to our son. We are very concerned that if we have a

second child he/she will be on the spectrum too. We will do all we can to

try and prevent it, but if it's genetic then what can we do?

-Kim

Mom to Noah 2 1/2 yrs old, ASD, SCD 26months

Research is showing that metals like mercury, lead, cadmium and arsenic

can change DNA, as they have mutagenic properties on cells. Especially liver

and immune cells. And we all know, the first metal exposure causes upheavals

in the intestinal flora and suppresses the immune system. So a new

susceptability is being passed down. It is not strictly genetic, it is DNA

Damage.

Just wanted to give another spin on this theory. While autism would seem

genetic in our small family history, it exists no where else in the older

generations, like a ton of people. There is a genetic link, a new kind, I

think.

Summer

[Guest guest]

Kim,

I don't have those kind of answers myself. I am scratching my head, just like

everyone else here. I come off as strongly opinionated, I have confidence from

the measures I have taken with my sons, but I don't know.

If I were to have another baby, I would try to plan it at least a year ahead

of time. I would get in the best physical shape exercise wise, make sure I have

taken care of any leaky gut issues of my own, which I believe also can

complicate matters in utero.

I would find the best source drinking water. I would run hepa filters in my

home. I would be (well am) fun a chemical free household. I would be SCD 100%. I

would take digestive enzymes, probiotics. I would limit eating sea food, if at

all. I would increase my omega 3's to 6. I would optimize the diet. I would not

allow the doctors to inject hepatitus b vaccine the day after birth. I would

stay active in pregnancy, every day with something like yoga, because when the

body is exercised, it helps blood flow and elimination of toxins from the fetus.

Basically, I would handle the pregnancy like I hand my own sons, with kid

gloves.

All these things will contribute, hopefully, to a baby that is born with an

immune system that has a chance to develop. I would be very careful to

breastfeed, and in choosing diapers, which contain some nasty chemicals. Rather

then treat yeast infections with stuff like Nystatin, like we used to do, I

would work on identifying the triggers ie food.

Ben, was born a premie, but it wasn't until he was vaccinated with MMR at 8

months, that everything fell apart for him, instantly starting years of non-stop

diarhea and all that. Since SCD and enzymes have cleared up his infection, I now

think, if he had not received that vaccine, and was on SCD/enzymes, and I had a

grip at that age on diet allergies/sensitivities, he would not have developed

the problems he had. If the immune system cannot develop properly, sure as heck

a vaccination is not going to be very useful. The few diptheria outbreaks I have

seen the last few years in the Pacific Northwest are evidence of that. Over 95%

of those children who got sick had been fully vaccinated.

Kim, this is what I would do at least. I would be very careful and research

any drugs or anything a doctor prescribes for you while pregnant, or your baby

afterwards.

Summer

" Witkowicz, [DPYUS] " kwitkowi@...> wrote:

Summer,

We also have no history of ASD in our family or my

husbands.(to our knowledge). I wonder all the time where this came from and

why did it happen to our son. We are very concerned that if we have a

second child he/she will be on the spectrum too. We will do all we can to

try and prevent it, but if it's genetic then what can we do?

-Kim

Mom to Noah 2 1/2 yrs old, ASD, SCD 26months

Research is showing that metals like mercury, lead, cadmium and arsenic

can change DNA, as they have mutagenic properties on cells. Especially liver

and immune cells. And we all know, the first metal exposure causes upheavals

in the intestinal flora and suppresses the immune system. So a new

susceptability is being passed down. It is not strictly genetic, it is DNA

Damage.

Just wanted to give another spin on this theory. While autism would seem

genetic in our small family history, it exists no where else in the older

generations, like a ton of people. There is a genetic link, a new kind, I

think.

Summer

[Guest guest]

I agree with everything Summer said. I have been thinking a lot about this

as well. If we have any future children I will take every precaution.

FWIW, I was pregnant with my second when Kai was diagnosed so I didn't have

much of a chance to do what I *would do now*. What I did do is delay

indefinitely the MMR and fed her GF/CF from birth. She is now SCD with her

brother. She is NT and doesn't show any delays whatsoever.

...........

Kelli

Kai & Tatum

_____

From: pecanbread [mailto:pecanbread ] On

Behalf Of Gertrude Snicklegrove

Sent: Wednesday, March 15, 2006 8:57 AM

To: pecanbread

Subject: Re: Kim

Kim,

I don't have those kind of answers myself. I am scratching my head, just

like everyone else here. I come off as strongly opinionated, I have

confidence from the measures I have taken with my sons, but I don't know.

If I were to have another baby, I would try to plan it at least a year

ahead of time. I would get in the best physical shape exercise wise, make

sure I have taken care of any leaky gut issues of my own, which I believe

also can complicate matters in utero.

I would find the best source drinking water. I would run hepa filters in

my home. I would be (well am) fun a chemical free household. I would be SCD

100%. I would take digestive enzymes, probiotics. I would limit eating sea

food, if at all. I would increase my omega 3's to 6. I would optimize the

diet. I would not allow the doctors to inject hepatitus b vaccine the day

after birth. I would stay active in pregnancy, every day with something like

yoga, because when the body is exercised, it helps blood flow and

elimination of toxins from the fetus. Basically, I would handle the

pregnancy like I hand my own sons, with kid gloves.

All these things will contribute, hopefully, to a baby that is born with

an immune system that has a chance to develop. I would be very careful to

breastfeed, and in choosing diapers, which contain some nasty chemicals.

Rather then treat yeast infections with stuff like Nystatin, like we used to

do, I would work on identifying the triggers ie food.

Ben, was born a premie, but it wasn't until he was vaccinated with MMR at

8 months, that everything fell apart for him, instantly starting years of

non-stop diarhea and all that. Since SCD and enzymes have cleared up his

infection, I now think, if he had not received that vaccine, and was on

SCD/enzymes, and I had a grip at that age on diet allergies/sensitivities,

he would not have developed the problems he had. If the immune system cannot

develop properly, sure as heck a vaccination is not going to be very useful.

The few diptheria outbreaks I have seen the last few years in the Pacific

Northwest are evidence of that. Over 95% of those children who got sick had

been fully vaccinated.

Kim, this is what I would do at least. I would be very careful and

research any drugs or anything a doctor prescribes for you while pregnant,

or your baby afterwards.

Summer

" Witkowicz, [DPYUS] " kwitkowi@...> wrote:

Summer,

We also have no history of ASD in our family or my

husbands.(to our knowledge). I wonder all the time where this came from and

why did it happen to our son. We are very concerned that if we have a

second child he/she will be on the spectrum too. We will do all we can to

try and prevent it, but if it's genetic then what can we do?

-Kim

Mom to Noah 2 1/2 yrs old, ASD, SCD 26months

Research is showing that metals like mercury, lead, cadmium and arsenic

can change DNA, as they have mutagenic properties on cells. Especially liver

and immune cells. And we all know, the first metal exposure causes upheavals

in the intestinal flora and suppresses the immune system. So a new

susceptability is being passed down. It is not strictly genetic, it is DNA

Damage.

Just wanted to give another spin on this theory. While autism would seem

genetic in our small family history, it exists no where else in the older

generations, like a ton of people. There is a genetic link, a new kind, I

think.

Summer

[Guest guest]

I agree with everything Summer said. I have been thinking a lot about this

as well. If we have any future children I will take every precaution.

FWIW, I was pregnant with my second when Kai was diagnosed so I didn't have

much of a chance to do what I *would do now*. What I did do is delay

indefinitely the MMR and fed her GF/CF from birth. She is now SCD with her

brother. She is NT and doesn't show any delays whatsoever.

...........

Kelli

Kai & Tatum

_____

From: pecanbread [mailto:pecanbread ] On

Behalf Of Gertrude Snicklegrove

Sent: Wednesday, March 15, 2006 8:57 AM

To: pecanbread

Subject: Re: Kim

Kim,

I don't have those kind of answers myself. I am scratching my head, just

like everyone else here. I come off as strongly opinionated, I have

confidence from the measures I have taken with my sons, but I don't know.

If I were to have another baby, I would try to plan it at least a year

ahead of time. I would get in the best physical shape exercise wise, make

sure I have taken care of any leaky gut issues of my own, which I believe

also can complicate matters in utero.

I would find the best source drinking water. I would run hepa filters in

my home. I would be (well am) fun a chemical free household. I would be SCD

100%. I would take digestive enzymes, probiotics. I would limit eating sea

food, if at all. I would increase my omega 3's to 6. I would optimize the

diet. I would not allow the doctors to inject hepatitus b vaccine the day

after birth. I would stay active in pregnancy, every day with something like

yoga, because when the body is exercised, it helps blood flow and

elimination of toxins from the fetus. Basically, I would handle the

pregnancy like I hand my own sons, with kid gloves.

All these things will contribute, hopefully, to a baby that is born with

an immune system that has a chance to develop. I would be very careful to

breastfeed, and in choosing diapers, which contain some nasty chemicals.

Rather then treat yeast infections with stuff like Nystatin, like we used to

do, I would work on identifying the triggers ie food.

Ben, was born a premie, but it wasn't until he was vaccinated with MMR at

8 months, that everything fell apart for him, instantly starting years of

non-stop diarhea and all that. Since SCD and enzymes have cleared up his

infection, I now think, if he had not received that vaccine, and was on

SCD/enzymes, and I had a grip at that age on diet allergies/sensitivities,

he would not have developed the problems he had. If the immune system cannot

develop properly, sure as heck a vaccination is not going to be very useful.

The few diptheria outbreaks I have seen the last few years in the Pacific

Northwest are evidence of that. Over 95% of those children who got sick had

been fully vaccinated.

Kim, this is what I would do at least. I would be very careful and

research any drugs or anything a doctor prescribes for you while pregnant,

or your baby afterwards.

Summer

" Witkowicz, [DPYUS] " kwitkowi@...> wrote:

Summer,

We also have no history of ASD in our family or my

husbands.(to our knowledge). I wonder all the time where this came from and

why did it happen to our son. We are very concerned that if we have a

second child he/she will be on the spectrum too. We will do all we can to

try and prevent it, but if it's genetic then what can we do?

-Kim

Mom to Noah 2 1/2 yrs old, ASD, SCD 26months

Research is showing that metals like mercury, lead, cadmium and arsenic

can change DNA, as they have mutagenic properties on cells. Especially liver

and immune cells. And we all know, the first metal exposure causes upheavals

in the intestinal flora and suppresses the immune system. So a new

susceptability is being passed down. It is not strictly genetic, it is DNA

Damage.

Just wanted to give another spin on this theory. While autism would seem

genetic in our small family history, it exists no where else in the older

generations, like a ton of people. There is a genetic link, a new kind, I

think.

Summer

[Guest guest]

Quint, I wondered why we hadn't heard much from you. I'll bet you've been out barefoot waterskiing, haven't you? Did the Remicade reverse any of the vision & other problems?

I'm glad you are doing so much better.

Ramblin' Rose

Moderator

From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: KIMDate: Thu, 16 Mar 2006 12:09:05 -0500KIM DEAR I AM GLAD TO HERE ABOUT YOUR GOOD NEWS.I AM ALSO ON REMICADE IT HAS BEEN 2YRS NOW AND I THINK ITS GREAT.LAST YEAR ARTHRITIS & SARC STARTED KICKING MY BUTT.MY DOC HAD ANOTHER PT WHO HAD ARTHRITIS/SARC HE PUT HIM ON REMICADE THE PT WAS IN A WHEEL CHAIR.SINCE BEING ON REMICADE HE CAN NOW WALK. SO THE DOC THOUGHT I SHOULD TRY IT.I DID AND NO MORE ARTHRITIS OR SARC PROBLEMS.IT HAS WORKED FOR ME I PRAY IT WILL WORK FOR YOU.......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Quint, I wondered why we hadn't heard much from you. I'll bet you've been out barefoot waterskiing, haven't you? Did the Remicade reverse any of the vision & other problems?

I'm glad you are doing so much better.

Ramblin' Rose

Moderator

From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: KIMDate: Thu, 16 Mar 2006 12:09:05 -0500KIM DEAR I AM GLAD TO HERE ABOUT YOUR GOOD NEWS.I AM ALSO ON REMICADE IT HAS BEEN 2YRS NOW AND I THINK ITS GREAT.LAST YEAR ARTHRITIS & SARC STARTED KICKING MY BUTT.MY DOC HAD ANOTHER PT WHO HAD ARTHRITIS/SARC HE PUT HIM ON REMICADE THE PT WAS IN A WHEEL CHAIR.SINCE BEING ON REMICADE HE CAN NOW WALK. SO THE DOC THOUGHT I SHOULD TRY IT.I DID AND NO MORE ARTHRITIS OR SARC PROBLEMS.IT HAS WORKED FOR ME I PRAY IT WILL WORK FOR YOU.......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Quint, I wondered why we hadn't heard much from you. I'll bet you've been out barefoot waterskiing, haven't you? Did the Remicade reverse any of the vision & other problems?

I'm glad you are doing so much better.

Ramblin' Rose

Moderator

From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: KIMDate: Thu, 16 Mar 2006 12:09:05 -0500KIM DEAR I AM GLAD TO HERE ABOUT YOUR GOOD NEWS.I AM ALSO ON REMICADE IT HAS BEEN 2YRS NOW AND I THINK ITS GREAT.LAST YEAR ARTHRITIS & SARC STARTED KICKING MY BUTT.MY DOC HAD ANOTHER PT WHO HAD ARTHRITIS/SARC HE PUT HIM ON REMICADE THE PT WAS IN A WHEEL CHAIR.SINCE BEING ON REMICADE HE CAN NOW WALK. SO THE DOC THOUGHT I SHOULD TRY IT.I DID AND NO MORE ARTHRITIS OR SARC PROBLEMS.IT HAS WORKED FOR ME I PRAY IT WILL WORK FOR YOU.......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Marla, that's a good idea, for all of us to remember Kim Saturday--in our thoughts, prayers, vibes, any way of support. Now I'm thinking that Kuwait is about 12 hours later than EST; does anyone know if that's right? So Saturday morning in Kuwait would be Friday eve. EST, more or less?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: KimDate: Thu, 16 Mar 2006 13:12:18 -0800

Kim, I am so happy they are going to get you on something, you have been through way too much. Please know that I will be praying for you, that there is a bed on Sat. and that you get quick relief from you're first dose.If we all pray for you on Sat. then God will bless you for sure. Find flowers, candy and directions to a romantic restaurant with Windows Live Local

[Guest guest]

Marla, that's a good idea, for all of us to remember Kim Saturday--in our thoughts, prayers, vibes, any way of support. Now I'm thinking that Kuwait is about 12 hours later than EST; does anyone know if that's right? So Saturday morning in Kuwait would be Friday eve. EST, more or less?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: KimDate: Thu, 16 Mar 2006 13:12:18 -0800

Kim, I am so happy they are going to get you on something, you have been through way too much. Please know that I will be praying for you, that there is a bed on Sat. and that you get quick relief from you're first dose.If we all pray for you on Sat. then God will bless you for sure. Find flowers, candy and directions to a romantic restaurant with Windows Live Local

[Guest guest]

Marla, that's a good idea, for all of us to remember Kim Saturday--in our thoughts, prayers, vibes, any way of support. Now I'm thinking that Kuwait is about 12 hours later than EST; does anyone know if that's right? So Saturday morning in Kuwait would be Friday eve. EST, more or less?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: KimDate: Thu, 16 Mar 2006 13:12:18 -0800

Kim, I am so happy they are going to get you on something, you have been through way too much. Please know that I will be praying for you, that there is a bed on Sat. and that you get quick relief from you're first dose.If we all pray for you on Sat. then God will bless you for sure. Find flowers, candy and directions to a romantic restaurant with Windows Live Local

[Guest guest]

Hi Kim,

You said something in this I hadn't heard before, "ankle pain", I get

and have for years off and on terrible ankle pain, only the left ankle,

like the whole bone is in pain. I then start wondering if I have

something going on in my back, like when I had a ruptured disc, and

needy surgery, I had the pain then, and for months after wards, which

the doc said was strange, that the pain should of disappeared right

after surgery like the back pain did, but it didn't and I still to this

day get the "terrible ankle pain".

I think of you often, and pray for you daily. when is your next

Remicade treatment? I pray it works as well for you as it has for some

of the others.

I am still hanging in there, doing pretty good, I'm off the neurontin,

tried weaning the Mtx, but starting having problems so went back up,

will try again in a couple weeks. over all I am still much better, and

praise God for the healing touch of the Holy Spirit. But my bad days

are still bad, only my good days are better and more often, so never

give up on the power of prayer, even if this is the extent of my

healing I am so very grateful, and feel so blessed so be able to do

some more things in life. please don't give on God, the doctors may

not know what they are doing, but God cares and he listens, but we have

to ask for help.

as you can see here I am at 1 in the morning, unable to sleep, legs

jumping all over the bed, or maybe it was just the body jumping. And

the cold is still a killer, we had a cold spell last week and put me

down for a couple days, pain mostly, but with pain comes fatigue. now

it's in the 60s, so that helps me to feel better. I think of you often,

take care and be good to yourself, let me know if I can ever help with

anything, OK?

lots of love, hugs and blessings,

Marla

Dear Rose & All,

Reading through your reply to Jeannie has made me realize why it is so hard for me to turn my full faith and trust over to my Dr.s (whether I am here in Kuwait or in the U.S. or anywhere else), why I am also questioning their decisions, reading up on their decisions, on the meds, on the tests, trying so desperately to learn what I can about everything and stressing so much over it all. Why I can't be like other patients who have the ability to trust in the Dr.s decisions and advice. I use to have that ability, I was not always like this. I used to listen to the Dr and take my meds, walk away believing what they said whole heartedly.

But what you say below about being told for 5 years there was nothing wrong with you, despite going to your family Dr who knew you well Im sure, is quite similiar to the way I became so leary of Drs now. Like so many , probably all the members of this group, I saw Drs for things that were signs that something was seriously , seriously wrong for at least the two and half years prior to my diagnosis. They all told me i was working too hard and stressed. At one point I had severe, I mean severe I tell you,ankle pain and pain on the bottom of my feet, it was an isolated symptom i think, who knows, it was so severe i literally couldnt move or once i was up for a period of time i wouldnt dare think to sit back down the pain would get so unbearable. That d------- dr told me it was my weight!!! my wieght was 150 pounds at the time and i am 5' 5' now granted, i needed to lose a little weight, but i wasnt obese. she was about 40 pounds more than me , i remember telling her

she was substantially heavier than me, did she have such horrid pain? she actually said to me that each body had its limits. i just left. that was about three and half years or little more before my dx. gosh i remember that severe pain, it would come and go, stay for weeks then just disappear for long periods of time. it was excruciating. sometimes i go over the two years before dx as things got worse, the times i couldnt stand up straight, and the d---- ent just shrugging his shoulders at me.... telling me to get some rest. when i was so screwed up and the first times having colustrum when i wasnt nursing or having a pregnancy, but missing periods and so messed up, something was wrong i knew it..... i said maybe i was in menapause early?? the gynocologyst said hwo old are you?? early 30's? it cant be...... you are tired , you are working hard, get some rest.......

i couldnt breath, i was exhausted, i hurt everywhere, something was wrong, i thought maybe diabetes..... they ran the tests for me.... all normal. they said no you are tired get some rest....

no one ever added all these visits up, until when? until i literally showed up unable to walk, stand, having severe neurologic deficits and disease. i remember this appt clearly with this dr, who said you were here a year ago, and yes you have been in the clinic to many specialists over the past two years complaining of the same things .... and then had the nerve to tell me after their exams over those few days he thought i had progressive degenerative neuro muscular disease and it was urgent i get out of the country for evaluation. but i believed them. i believed all these drs who said i was just stressed and tired and neded rest. i didnt really question them to be honest with you. and there are many many many more examples i could tell you of specific things overlooked before my dx. specific things crying out AUTOIMMUNE DISEASE IDIOT!!!!!!

and over and over i hear stories the saem from one after the other of you ...... so its such a dilemna... the question of the day is this..

how do we get over this and learn to retrust our physicians? because we must. at the point of illness when we can not understand the tests and all they mean. when we are incapable of making decisions for ourselves, because we are simply to exhuasted or to sick, or do not understand it all etc, we have to be able to let go and trust that our physicans know best and are in fact not idiots and are doing thier best for us, we have to believe in this, in our hearts, we have to feel safe in it. that they are looking out for us. but how do we? when its our lives or daily functioning or cognitive abilities etc that are in their hands, when it is honestly at hat level? not just an annoying cough anymore, or a small pain in the left pinky, but debilitating pain that will turn crippling if not stopped in its tracks perhaps, or a cough that will maybe lead to permenant lung damage. you get the point.

how do we stop punishing our current drs for past drs failures, while still being intelligent consumers of health care and protecting our rights? how do you ensure you are getting the best care without annoying the crap out of your dr, especially when you are dealing with an illness they do not know about and already feel inadequate about? how do you educate yourself about lab work and tests when they get to a point that its just not basic enough for you anymore to look it up on the net and get the simple info you need and your dr doesnt want to take the time to explain it to you any longer? or gives you such a trite answer even you have to laugh at it. and how in the world do we get over them having an attitude with us for actually having an attitude with them for treating us the way they do? because they studied medicine and have knowledge we dont, they are what? is that why they became drs? to help people get better, which has to include sharing their knowledge in simple terms or to hold thier knowledge to themselves and look down upon the people begging for the help?

sorry for the ranting, can you tell im feeling resentful? on the behalf of everyone, not just myself, everytime i read a post from one of you having these dx stories i become more and more furious and resentful, at the same time, more and more saddened for everyone. I tried to do some research on the Dr - patient relationship and found an okay link... it was from a lupus site, but it doesnt really answer my questions either. It was a starting point though. take care and dont give up

kim

ns moderator

http://www.mtio.com/lupus/lal_20.htm

I wish everyone the best and hold you all in my heart and prayers.

Take care,

Kim

NS Moderator

Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron.

Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect every organ & system in your body & that you may have a lot of weird symptoms. I used to feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it.

Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor.

Ramblin' Rose

Moderator

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

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-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Oh Kim,

I am so sorry to hear this. Shingles are "SO" very Painful, because

the rash starts at the end of the nerve roots and comes out to the

surface, nerve pain, the burning pain you described, I can't believe

they didn't look for this either, I knew you where going to say

shingles before you got to it. I am under the understanding that the

pills will shorten the duration of the rash, even if you've had them

for awhile, it is certainly worth taking unless they will react with

something you are already on. My son at about 10 got shingles and even

though he had it for a few days before going to the doctor, he still

gave him the pills.

My prayers are with you Kim.

I know this sounds funny but I hope you are praying for yourself too.

I say that because I use to pray for everyone else but me, and one day

my doctor asked if I was praying for myself, and I said, well No there

are so many much worse then me that need my prayers, and he looked me

right in the eyes and said, Marla it's time to start praying for

yourself too, you are one of those. So I did, and you know what Kim,

it has really turned my life around, every day I asked God to heal me,

and he lead me to someone who then prayed over me leading to my

healing. Now I thank God everyday for my continued healing, as I still

have problems and pain, and know it will take awhile, but I know have

more good days then bad! Please Kim pray for healing, and the hardest

part of all, believe me, is believing that he is healing us, I still do

things like go to the doctor to "fix" something he gives me meds. and

they make me sooo much worse, fatter the second time of that, My

husband asked if I had stopped believing, and I said no, he asked why I

kept going to the doctor, (not that we shouldn't, don't get me wrong

there either). But I know there will be things that drugs are not

going to fix to. And I am still on several drugs, but I ask God to

heal me to his will, and that is better then where I was. Kim I hope

you don't take offense to this, I say all this with a deep ache in my

heart, and tears in my eyes for you, I wish I could pray and that would

heal every single one of us with Saracoid. Kim, my heart aches because

such a good person, friend is going through such hell, and it's just

not right.

When I pray for healing, I also ask God to take away my doubt, as I am

human.

Hang in there, and know blessings are being sent your way.

Love,

Marla

Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to

be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is

also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money

for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started?

what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days....

good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way,

you are all in my prayers and i cant thank you enough for yours

kim

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

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-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Oh Kim,

I am so sorry to hear this. Shingles are "SO" very Painful, because

the rash starts at the end of the nerve roots and comes out to the

surface, nerve pain, the burning pain you described, I can't believe

they didn't look for this either, I knew you where going to say

shingles before you got to it. I am under the understanding that the

pills will shorten the duration of the rash, even if you've had them

for awhile, it is certainly worth taking unless they will react with

something you are already on. My son at about 10 got shingles and even

though he had it for a few days before going to the doctor, he still

gave him the pills.

My prayers are with you Kim.

I know this sounds funny but I hope you are praying for yourself too.

I say that because I use to pray for everyone else but me, and one day

my doctor asked if I was praying for myself, and I said, well No there

are so many much worse then me that need my prayers, and he looked me

right in the eyes and said, Marla it's time to start praying for

yourself too, you are one of those. So I did, and you know what Kim,

it has really turned my life around, every day I asked God to heal me,

and he lead me to someone who then prayed over me leading to my

healing. Now I thank God everyday for my continued healing, as I still

have problems and pain, and know it will take awhile, but I know have

more good days then bad! Please Kim pray for healing, and the hardest

part of all, believe me, is believing that he is healing us, I still do

things like go to the doctor to "fix" something he gives me meds. and

they make me sooo much worse, fatter the second time of that, My

husband asked if I had stopped believing, and I said no, he asked why I

kept going to the doctor, (not that we shouldn't, don't get me wrong

there either). But I know there will be things that drugs are not

going to fix to. And I am still on several drugs, but I ask God to

heal me to his will, and that is better then where I was. Kim I hope

you don't take offense to this, I say all this with a deep ache in my

heart, and tears in my eyes for you, I wish I could pray and that would

heal every single one of us with Saracoid. Kim, my heart aches because

such a good person, friend is going through such hell, and it's just

not right.

When I pray for healing, I also ask God to take away my doubt, as I am

human.

Hang in there, and know blessings are being sent your way.

Love,

Marla

Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to

be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is

also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money

for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started?

what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days....

good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way,

you are all in my prayers and i cant thank you enough for yours

kim

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Oh Kim,

I am so sorry to hear this. Shingles are "SO" very Painful, because

the rash starts at the end of the nerve roots and comes out to the

surface, nerve pain, the burning pain you described, I can't believe

they didn't look for this either, I knew you where going to say

shingles before you got to it. I am under the understanding that the

pills will shorten the duration of the rash, even if you've had them

for awhile, it is certainly worth taking unless they will react with

something you are already on. My son at about 10 got shingles and even

though he had it for a few days before going to the doctor, he still

gave him the pills.

My prayers are with you Kim.

I know this sounds funny but I hope you are praying for yourself too.

I say that because I use to pray for everyone else but me, and one day

my doctor asked if I was praying for myself, and I said, well No there

are so many much worse then me that need my prayers, and he looked me

right in the eyes and said, Marla it's time to start praying for

yourself too, you are one of those. So I did, and you know what Kim,

it has really turned my life around, every day I asked God to heal me,

and he lead me to someone who then prayed over me leading to my

healing. Now I thank God everyday for my continued healing, as I still

have problems and pain, and know it will take awhile, but I know have

more good days then bad! Please Kim pray for healing, and the hardest

part of all, believe me, is believing that he is healing us, I still do

things like go to the doctor to "fix" something he gives me meds. and

they make me sooo much worse, fatter the second time of that, My

husband asked if I had stopped believing, and I said no, he asked why I

kept going to the doctor, (not that we shouldn't, don't get me wrong

there either). But I know there will be things that drugs are not

going to fix to. And I am still on several drugs, but I ask God to

heal me to his will, and that is better then where I was. Kim I hope

you don't take offense to this, I say all this with a deep ache in my

heart, and tears in my eyes for you, I wish I could pray and that would

heal every single one of us with Saracoid. Kim, my heart aches because

such a good person, friend is going through such hell, and it's just

not right.

When I pray for healing, I also ask God to take away my doubt, as I am

human.

Hang in there, and know blessings are being sent your way.

Love,

Marla

Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to

be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is

also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money

for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started?

what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days....

good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way,

you are all in my prayers and i cant thank you enough for yours

kim

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[Guest guest]

Hi there, No, I am not taking any blood thinners. It's very odd... I wish I knew what was causing them. I continue to get stares like I am being abused!! Thanks for your email, Kimsarcdogg@... wrote: KIM DEAR ARE YOU TAKING BLOOD THINNERS?......QUINT

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[Guest guest]

Hi there, No, I am not taking any blood thinners. It's very odd... I wish I knew what was causing them. I continue to get stares like I am being abused!! Thanks for your email, Kimsarcdogg@... wrote: KIM DEAR ARE YOU TAKING BLOOD THINNERS?......QUINT

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.