New here

[Guest guest]

Kathe

Thanks for the welcome, I am going to see a rheumatologist on the 7th and

I'm hoping that he can help me!!! Wish me luck!

C Warren

Co-Founder

www.achalasia.us

From: [mailto: ] On

Behalf Of Kathe Sabetzadeh

Sent: Monday, October 30, 2006 9:52 PM

Subject: Re: [ ] New Here

Hi :

Welcome to the group! You will find great people here,

very supportive, and informative. I have RA, OA,

Raynaud's and Fibromyalgia. From your description, I

would say that you sound as if there is some sort of

autoimmune disease going on - but I am no doctor.

Your symptoms may be a form of CFIDS or Fibro, or any

of a number of diseases, because these autoimmune

diseases often mimic each other with symptoms and it

can take time to reach a final diagnosis.

The doctor who told you that it was all in your head

was dead wrong, and I would be reporting him for that

remark. That is what women it seems are told time and

time again, especially when the doctors cannot find

what is wrong with you by doing blood work, x-rays,

and that sort of thing. These diseases sometimes do

not show up on blood work or other lab tests, but are

diagnosed by symptoms and presentation at the time of

your office examination.

If you are not being seen by a rheumatologist, I would

suggest that strongly. These specialists are more

likely to be able to diagnose an autoimmune disease

than other doctors. I want to wish you the best of

luck in your quest for a diagnosis and treatment. If

you have any more questions, please don't hesitate to

ask. We have a lot of caring people here who have

gone through a lot with doctors and had difficulty in

being properly diagnosed and treated, so I am sure

that one of us will be able to answer you. Hang in

there -

Kathe in CA

--- juliecwarren6818 <juliecwarren@...

<mailto:juliecwarren%40comcast.net> > wrote:

> Hello all,

> My name is . I hope i can get a few answers

> here or at least a

> little insight. I have been tested for lupus, 13

> yrs ago, but not

> since. Recently have been tested for hypo thyroid

> (runs in my

> family) tests all came back in the normal range. I

> am going to a

> new doc next week. Here's a list of my symptoms

> (which this last

> doc said were all in my head) TIRED all the time,

> weak muscles after

> little activity, sick all the time, hair falling

> out, low blood

> pressure, low body temp, BIG brain fog, balance is

> really off

> (falling and droping things), forgeting things

> easily (really

> starting to effect my driving), speech is slurred at

> times (only a

> word or two), insomnia, but want to nap all the

> time, lossing weight

> and not trying, getting depressed, Raynaud Syndrome

> (hope i spelled

> it right). Along with a host of other things, but i

> think you get

> the picture. Now if i was 80 i would accept all of

> this!! I'm only

> 36!!! I am hoping that this new doc can help me,

> because its just

> getting worse. I do have a slight rash on my face,

> but not hugely

> noticable. Is it possible i could have a mild form

> of Lupus?? What

> are some good questions to ask the doc?? Thanks for

> any input!!!

>

>

>

>

>

__________________________________________________________

Cheap Talk? Check out Messenger's low PC-to-Phone call rates

(http://voice.)

[Guest guest]

Hi there!! I just wanted to say, thoroughly check out

rheume before seeing them. Mine poked on me for 5

minutes, did no blood work, no x-rays or anything. He

said it was fibromyalgia. I don't put a lot of stock

in rheumies at this time. I know that there are good

ones out there, I just haven't found them yet. Tami

Tami -Dossey

[Guest guest]

>

> Hello all,

> My name is . I hope i can get a few answers here or at least

a

> little insight. I have been tested for lupus, 13 yrs ago, but not

> since. Recently have been tested for hypo thyroid (runs in my

> family) tests all came back in the normal range. I am going to a

> new doc next week. Here's a list of my symptoms (which this last

> doc said were all in my head) TIRED all the time, weak muscles

after

> little activity, sick all the time, hair falling out, low blood

> pressure, low body temp, BIG brain fog, balance is really off

> (falling and droping things), forgeting things easily (really

> starting to effect my driving), speech is slurred at times (only a

> word or two), insomnia, but want to nap all the time, lossing

weight

> and not trying, getting depressed, Raynaud Syndrome (hope i

spelled

> it right). Along with a host of other things, but i think you get

> the picture. Now if i was 80 i would accept all of this!! I'm

only

> 36!!! I am hoping that this new doc can help me, because its just

> getting worse. I do have a slight rash on my face, but not hugely

> noticable. Is it possible i could have a mild form of Lupus??

What

> are some good questions to ask the doc?? Thanks for any input!!!

>

>

Hi ,

I also am new to the group....I can certainly feel for you. I went

through all the same symptoms in my mid forties. Lost thirty lbs in

one month, actually bought a wig because I'd lost so much hair. the

CONSTANT muscle aches and fatique. Dr first said I had Fibro but the

meds he prescribed did nothing to help so I continued to tell him

EVERY little symptom. The brain fog was the one that got his

attention to test my thyroid. Seems I've got Graves Disease. been

over 2 yrs now since radioactive iodine therapy and seems they have

the thyroid levels under control..but now the aches, pain, fatigue

are back in full force so thinking maybe fibro has flared up.

Wish I could be of more help but good luck with the Dr. and all I

can suggest is ....BE PERSISTANT....IT " S NOT IN YOUR HEAD.

Mollie

[Guest guest]

Mollie,

Thanks, I know I'm not crazy, but boy they make you feel that way!!! I'll

hopefully have some answers next week as to what he thinks it could be!!

Seems I have pretty good days and then some not so good days its on and off,

but more on then off!

C Warren

Co-Founder

www.achalasia.us

From: [mailto: ] On

Behalf Of mesinnc

Sent: Tuesday, October 31, 2006 7:26 PM

Subject: [ ] Re: New Here

>

> Hello all,

> My name is . I hope i can get a few answers here or at least

a

> little insight. I have been tested for lupus, 13 yrs ago, but not

> since. Recently have been tested for hypo thyroid (runs in my

> family) tests all came back in the normal range. I am going to a

> new doc next week. Here's a list of my symptoms (which this last

> doc said were all in my head) TIRED all the time, weak muscles

after

> little activity, sick all the time, hair falling out, low blood

> pressure, low body temp, BIG brain fog, balance is really off

> (falling and droping things), forgeting things easily (really

> starting to effect my driving), speech is slurred at times (only a

> word or two), insomnia, but want to nap all the time, lossing

weight

> and not trying, getting depressed, Raynaud Syndrome (hope i

spelled

> it right). Along with a host of other things, but i think you get

> the picture. Now if i was 80 i would accept all of this!! I'm

only

> 36!!! I am hoping that this new doc can help me, because its just

> getting worse. I do have a slight rash on my face, but not hugely

> noticable. Is it possible i could have a mild form of Lupus??

What

> are some good questions to ask the doc?? Thanks for any input!!!

>

>

Hi ,

I also am new to the group....I can certainly feel for you. I went

through all the same symptoms in my mid forties. Lost thirty lbs in

one month, actually bought a wig because I'd lost so much hair. the

CONSTANT muscle aches and fatique. Dr first said I had Fibro but the

meds he prescribed did nothing to help so I continued to tell him

EVERY little symptom. The brain fog was the one that got his

attention to test my thyroid. Seems I've got Graves Disease. been

over 2 yrs now since radioactive iodine therapy and seems they have

the thyroid levels under control..but now the aches, pain, fatigue

are back in full force so thinking maybe fibro has flared up.

Wish I could be of more help but good luck with the Dr. and all I

can suggest is ....BE PERSISTANT....IT " S NOT IN YOUR HEAD.

Mollie

[Guest guest]

Really sorry to hear this. I've read about a lot of children with osteomyelitis. More studies about very young children with osteo than almost any other, besides hip replacement osteo. Probably in a limb, right? The good news is, they are equipped to treat it, unlike some of our other chronic infections. Just be sure they always do the best for him. Since he's a child, they will probably go all out, but be on the lookout for any cutting of corners. Treating osteomyelitis is very expensive but it has to be done correctly so don't let your insurance company or docs try to pull anything. They should check him for clotting disorders, make sure his INR is in the perfect range for treatment, he should get antibiotics and probably debridement, depending on his situation. You have insurance, right? Do LOTS of research. Find other people who've been there so you can

avoid all the pitfalls (even hip replacement boards will have helpful info for you). If you're educated, you'll be equipped to help him beat this. And you never know, treatment might just help his autism too (if there is an infectious basis, as some people think). (On a side note, it's funny, but I was talking to someone the other day who said this doctor told her that putting his alzheimer's patients on i.v. abx for some infectious condition, was the best thing he could ever do for them. It was like a fountain of youth for the aged, they become clear headed again.) Just make sure they treat this as thoroughly as possible, by the book, and stay on top of it. You have an infectious disease doc and an orthopedic surgeon, I assume? I would think getting the blood coagulation testing should be a priority, because it's often necessary to use blood thinners to

get the drugs to the infection in the bone, since blood supply is limited there. If he has hereditary coagulation disorders, which are very common with osteomyelitis, that will impede his recovery, unless he's on blood thinners (which is pretty standard). You just want to know what the specific disorders might be, so that you know the correct target range for his INR while receiving treatment. Don't freak out about the coagulation issues. They're not life threatening, just potentially can impede fighting the infection. Blood is our immune system, so we need it working at optimum capacity. Good luck, and please keep us informed of his progress. penny alexandysmom <alexandysmom@...> wrote: my son who will be 8 soon just was told he has OSTEOMYELITIS anyone else here with children with the same thing. he also has autims so this is a very hard thing for him to deal withthanks cindi

[Guest guest]

Hi ,

Welcome to the group. I'm Steph in VA. I'm 29 & was dx'd with RA in 1999

when I was 22. My meds are: Sulfasazine, Prednisone, Ibuprofen, Folic Acid,

Flexerill, Methotrexate & Remicade. You could have a mild form of lupus. I have

a friend who has Sjogren's lupus. She has fatigue and all my her symptoms mostly

effect her skin & eyes (it does affect her joints in cold weather & high

stress.) Where do you live?

Take care,

Steph in VA

Hello all,

My name is . I hope i can get a few answers here or at least a little

insight. I have been tested for lupus, 13 yrs ago, but not since. Recently have

been tested for hypo thyroid (runs in my family) tests all came back in the

normal range. I am going to a new doc next week. Here's a list of my symptoms

(which this last doc said were all in my head) TIRED all the time, weak muscles

after little activity, sick all the time, hair falling out, low blood pressure,

low body temp, BIG brain fog, balance is really off (falling and droping

things), forgeting things easily (really starting to effect my driving), speech

is slurred at times (only a word or two), insomnia, but want to nap all the

time, lossing weight and not trying, getting depressed, Raynaud Syndrome (hope i

spelled it right). Along with a host of other things, but i think you get the

picture. Now if i was 80 i would accept all of this!! I'm only 36!!! I am hoping

that this new doc can help me, because its just

getting worse. I do have a slight rash on my face, but not hugely noticable. Is

it possible i could have a mild form of Lupus?? What are some good questions to

ask the doc?? Thanks for any input!!!

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

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

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

AmeriCorps Alums -- We're Still Getting Things Done

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

We have the perfect Group for you. Check out the handy changes to .

[Guest guest]

Steph

I'm in Indiana. I hopefully can get some answers when I go to the doc on

Tuesday. Thanks for the welcome!

C Warren

Co-Founder

www.achalasia.us

From: [mailto: ] On

Behalf Of DeNicola-

Sent: Sunday, November 05, 2006 2:58 PM

Subject: [ ] Re: New Here

Hi ,

Welcome to the group. I'm Steph in VA. I'm 29 & was dx'd with RA in 1999

when I was 22. My meds are: Sulfasazine, Prednisone, Ibuprofen, Folic Acid,

Flexerill, Methotrexate & Remicade. You could have a mild form of lupus. I

have a friend who has Sjogren's lupus. She has fatigue and all my her

symptoms mostly effect her skin & eyes (it does affect her joints in cold

weather & high stress.) Where do you live?

Take care,

Steph in VA

Hello all,

My name is . I hope i can get a few answers here or at least a little

insight. I have been tested for lupus, 13 yrs ago, but not since. Recently

have been tested for hypo thyroid (runs in my family) tests all came back in

the normal range. I am going to a new doc next week. Here's a list of my

symptoms (which this last doc said were all in my head) TIRED all the time,

weak muscles after little activity, sick all the time, hair falling out, low

blood pressure, low body temp, BIG brain fog, balance is really off (falling

and droping things), forgeting things easily (really starting to effect my

driving), speech is slurred at times (only a word or two), insomnia, but

want to nap all the time, lossing weight and not trying, getting depressed,

Raynaud Syndrome (hope i spelled it right). Along with a host of other

things, but i think you get the picture. Now if i was 80 i would accept all

of this!! I'm only 36!!! I am hoping that this new doc can help me, because

its just

getting worse. I do have a slight rash on my face, but not hugely noticable.

Is it possible i could have a mild form of Lupus?? What are some good

questions to ask the doc?? Thanks for any input!!!

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

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

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

Mead)

AmeriCorps Alums -- We're Still Getting Things Done

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

We have the perfect Group for you. Check out the handy changes to

Groups.

[Guest guest]

I haven't been at it for as long as you, but am going through the

same thing... drug after drug, for 3 months at a time. (except when

I have had to stop faster because of bad side effects) I've been on

prednisone non-stop for a year now, though the dose I take is lower

now. I know I need to be patient, but I agree with you, it's not

easy!

--- In , " hampie_100 " <hampie_100@...>

wrote:

>

> hello, Im Stacey, I was diagnosed w/RA almost 3 yrs ago, but have

had

> sypmtons for 5. Ive been on methotrexate, enbrel, humira, various

> antiinflammatories and pain relievers.

> the only thing that helps me is the medrol (steroid) pack, and we

know

> we cant be on them constantly .

> I have constant pain in my hands, wrists, and my ankles get so

stiff

> that i can hardly walk when i get out of bed.

> I take my humira 1/week and have been since october. My rheummy

> says, " give it the three mos " Im sick of giving it 3 mos- 3 mos

has

> turned into 3 yrs+. She said at my next visit if i still feel the

> same we'll try a different type of drug that approaches the disease

> differently. (i forget the name)

> have any of you been in this position. Im not even 30 yet and am

> tired of the pain, stiffness and needing help on doing so many

things.

> i appreciate any advice-thanks!

> Stacey

>

[Guest guest]

the medrols the only thing that helps. Its so

frustrating. What do you take now?

--- Randall <krandall@...> wrote:

> I haven't been at it for as long as you, but am

> going through the

> same thing... drug after drug, for 3 months at a

> time. (except when

> I have had to stop faster because of bad side

> effects) I've been on

> prednisone non-stop for a year now, though the dose

> I take is lower

> now. I know I need to be patient, but I agree with

> you, it's not

> easy!

>

>

>

>

> >

> > hello, Im Stacey, I was diagnosed w/RA almost 3

> yrs ago, but have

> had

> > sypmtons for 5. Ive been on methotrexate, enbrel,

> humira, various

> > antiinflammatories and pain relievers.

> > the only thing that helps me is the medrol

> (steroid) pack, and we

> know

> > we cant be on them constantly .

> > I have constant pain in my hands, wrists, and my

> ankles get so

> stiff

> > that i can hardly walk when i get out of bed.

> > I take my humira 1/week and have been since

> october. My rheummy

> > says, " give it the three mos " Im sick of giving

> it 3 mos- 3 mos

> has

> > turned into 3 yrs+. She said at my next visit if

> i still feel the

> > same we'll try a different type of drug that

> approaches the disease

> > differently. (i forget the name)

> > have any of you been in this position. Im not

> even 30 yet and am

> > tired of the pain, stiffness and needing help on

> doing so many

> things.

> > i appreciate any advice-thanks!

> > Stacey

> >

>

>

>

__________________________________________________

[Guest guest]

Right now I'm on 15mg MTX weekly, Humira biweekly, 75 mg Voltaren

twice a day, and 8 mg prednisone daily.

> > >

> > > hello, Im Stacey, I was diagnosed w/RA almost 3

> > yrs ago, but have

> > had

> > > sypmtons for 5. Ive been on methotrexate, enbrel,

> > humira, various

> > > antiinflammatories and pain relievers.

> > > the only thing that helps me is the medrol

> > (steroid) pack, and we

> > know

> > > we cant be on them constantly .

> > > I have constant pain in my hands, wrists, and my

> > ankles get so

> > stiff

> > > that i can hardly walk when i get out of bed.

> > > I take my humira 1/week and have been since

> > october. My rheummy

> > > says, " give it the three mos " Im sick of giving

> > it 3 mos- 3 mos

> > has

> > > turned into 3 yrs+. She said at my next visit if

> > i still feel the

> > > same we'll try a different type of drug that

> > approaches the disease

> > > differently. (i forget the name)

> > > have any of you been in this position. Im not

> > even 30 yet and am

> > > tired of the pain, stiffness and needing help on

> > doing so many

> > things.

> > > i appreciate any advice-thanks!

> > > Stacey

> > >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Stacey

I guess we were diagnosed about the same time and have had about all the same

meds but I was on arava. Have you tried this? It has helped me more than some

of the others. Someone said you should not take MTX and Arava together so I

guess

mention it to your doc. I know how frustrating it is to be told to wait for

the med to kick

in and switching from one to the other med. While some of the meds didn't do a

lot

of good for my swelling or pain at least I am told that it has slowed down my

joint

damage.

Hugs,

Joy

hampie_100 <hampie_100@...> wrote:

hello, Im Stacey, I was diagnosed w/RA almost 3 yrs ago, but have had

sypmtons for 5. Ive been on methotrexate, enbrel, humira, various

antiinflammatories and pain relievers.

the only thing that helps me is the medrol (steroid) pack, and we know

we cant be on them constantly .

I have constant pain in my hands, wrists, and my ankles get so stiff

that i can hardly walk when i get out of bed.

I take my humira 1/week and have been since october. My rheummy

says, " give it the three mos " Im sick of giving it 3 mos- 3 mos has

turned into 3 yrs+. She said at my next visit if i still feel the

same we'll try a different type of drug that approaches the disease

differently. (i forget the name)

have any of you been in this position. Im not even 30 yet and am

tired of the pain, stiffness and needing help on doing so many things.

i appreciate any advice-thanks!

Stacey

Joy

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

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

Welcome!

I have such admiration for all of you here who have small children. Mine

were grown before I developed any problems, I really don't know how I would

have managed it if I had all the pain and stiffness I have now. I am afraid

to babysit for all three of my grandchildren at one time (2, 2, and 6

months) because I move so slowly. You show such strength and courage, you

are my heroes.

Gentle hugs,

On 1/5/07, gingerjo68 <gingerjo68@...> wrote:

>

> Hi All

> I am a sahm to two small kids ages 2 and 5 years.

> I have had RA for 26 yrs have had both hips replaced and both knees

> replaced 15 yrs ago. I take celebrex and methotrxate and enbrel along

> with a dose of predisone

>

> Hope all are well and moving pain free today.

>

>

>

>

[Guest guest]

Hi -

Others will explain better than I can, but I'll take an initial stab - Not all

of us have respiratory issues by any means... That may be an impression because

so many doctors feel that mold issues are related to allergies and they ignore

reactions from toxins which can be entirely different.

Sounds like you guys have developed Multiple Chemical Senstivities (MCS) as a

lot of folks have on this site -

I'm one of the folks with the crushing fatigue - I don't fully understand it at

this point, but I've had a number of health issues before my mold exposures. I

think most of my problems from it are neurologic. I have renal issues that seem

to be from a congenital disease whose progression may be triggered by exposure

to mold - still learning about that (we don't have any known family history).

The best help I've found is some information about amino acids from a friend on

this site, and L-Carnitine/CoQ10 supplement has given me a bit more reliable

energy.

I'm sure others will give you more and better info soon...

~Haley

ff_dc <ff_dc@...> wrote: Hi,

I'm new to the group. I have several general questions...

Is it unusual to not have any respiratory symptoms if you have a mold

problem?

Background information on me: My husband and I both have Lyme

disease. We've been treating the Lyme for about three years, and have

made some improvement but are still far from healthy. I did Dr.

Marinkovich's allergy panel and turned up with extremely high mold

antibodies. So now we're exploring the mold issue and trying to

decide on a treatment path. I have the book " Mold Warriors " on order.

Any treatment suggestions are most welcome.

My main symptoms at the moment are a crushing fatigue, which sounds

familiar for mold victims. But I don't really have respiratory

problems. So I'm wondering if that's unusual or not. I am sensitive

to perfumes and strong scents.

I also have severe sensitivity to UV light. I can get sunburned by

extremely small amounts of sunlight. It started with the antibiotics

for Lyme, but I've been off them for six months and the sensitivity

persists. Regular light doesn't bother me--I just get burned by UV.

Was wondering if anyone else has this strange symptom/side effect.

Thanks so much for any suggestions/comments you might have.

Wishing you all good health....

[Guest guest]

hI, SOME MOLDS EFFECT THE LUNGS MORE THAN OTHERS. A SEARCH ON FUNGAL

LUNG INFECTIONS MAY HELP YOU..

>

> Hi,

>

> I'm new to the group. I have several general questions...

>

> Is it unusual to not have any respiratory symptoms if you have a

mold

> problem?

>

> Background information on me: My husband and I both have Lyme

> disease. We've been treating the Lyme for about three years, and

have

> made some improvement but are still far from healthy. I did Dr.

> Marinkovich's allergy panel and turned up with extremely high mold

> antibodies. So now we're exploring the mold issue and trying to

> decide on a treatment path. I have the book " Mold Warriors " on

order.

> Any treatment suggestions are most welcome.

>

> My main symptoms at the moment are a crushing fatigue, which sounds

> familiar for mold victims. But I don't really have respiratory

> problems. So I'm wondering if that's unusual or not. I am

sensitive

> to perfumes and strong scents.

>

> I also have severe sensitivity to UV light. I can get sunburned by

> extremely small amounts of sunlight. It started with the

antibiotics

> for Lyme, but I've been off them for six months and the sensitivity

> persists. Regular light doesn't bother me--I just get burned by

UV.

> Was wondering if anyone else has this strange symptom/side effect.

>

> Thanks so much for any suggestions/comments you might have.

>

> Wishing you all good health....

>

[Guest guest]

ff,

I'll have to agree with Haley. Not all experience respiratory issues

after mold exposure. Some do and others experience the neurological

conditions and other immune disorders. Or if you happen to be the

unlucky one, both and many other symptoms.

Sorry to hear that you are also dealing with Lyme. It would be very

difficult to try and determine what neurotoxin is causing what

symptom(s). Dr.S. treats both and it also sounds like you are

beginning to experience the sensitivity to chemicals (MCS). Three

totally different critters, in a way, all with overlapping symptoms.

KC

>

> Hi,

>

> I'm new to the group. I have several general questions...

>

> Is it unusual to not have any respiratory symptoms if you have a

mold

> problem?

>

> Background information on me: My husband and I both have Lyme

> disease. We've been treating the Lyme for about three years, and

have

> made some improvement but are still far from healthy. I did Dr.

> Marinkovich's allergy panel and turned up with extremely high mold

> antibodies. So now we're exploring the mold issue and trying to

> decide on a treatment path. I have the book " Mold Warriors " on

order.

> Any treatment suggestions are most welcome.

>

> My main symptoms at the moment are a crushing fatigue, which sounds

> familiar for mold victims. But I don't really have respiratory

> problems. So I'm wondering if that's unusual or not. I am

sensitive

> to perfumes and strong scents.

>

> I also have severe sensitivity to UV light. I can get sunburned by

> extremely small amounts of sunlight. It started with the

antibiotics

> for Lyme, but I've been off them for six months and the sensitivity

> persists. Regular light doesn't bother me--I just get burned by

UV.

> Was wondering if anyone else has this strange symptom/side effect.

>

> Thanks so much for any suggestions/comments you might have.

>

> Wishing you all good health....

>

[Guest guest]

Hi Janice. Welcome

I'm new here too . I've been on the list , but not posted yet.

Just wanted to say Welcome. And This group is wonderful !

Ann in TN

Oh and I'm a scrapbooker too!

kiwiscraps65 <kiwiscraps65@...> wrote:

hi everyone i am janice from new zealand

i am 41 years old and i have 4 school aged kids, and have been going

through a marriage speration for the past 18 months

i got cml about 2 months ago and been on glivec a month now and doing

well, my only problem is that i have a pulse noise in my ear, does

anyone else get this? its annoying and stops me sleeping well

i am a scrapbooker and i love that creative outlet

janice

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

Choose the right car based on your needs. Check out Autos new Car Finder

tool.

[Guest guest]

i got cml about 2 months ago and been on glivec a month now and doing

well, my only problem is that i have a pulse noise in my ear, does

anyone else get this? its annoying and stops me sleeping well

__________________

Hi Janice,

What is your present white count. When the white count (or platelets) are

still high, that causes a 'thicker' blood and it can cause you to actually

hear the circulation in your ear. Another reason might be if you have some

edema specifically in that area. On Gleevec, I used to have some vocal cord

edema (raspy voice) and some ear edema, in just one ear, that would cause

some discomfort in that ear........so edema might be a reason. When my ear

bothered me, I would use a diuretic (diazide) for a couple days and it

would clear up.

I am glad that you have found the list for information and

support........welcome.

C.

[Guest guest]

> Decided to rest up for a few days before taking it again. I was very

> conservative with one or two drops yesterday and then again today. I

> notice that the whole experience has a somewhat mind altering

effect.

> Wonder if anyone else has noticed this or is it just me?

Hi Jill.

What do you mean by mind altering? Could you be more specific?

Thanks,

Bob

[Guest guest]

Hi Bob,

It is hard to describe but it is like the day after taking a

psychedelic. Kind of fragile psychically.

Jill

>

>

> > Decided to rest up for a few days before taking it again. I was

very

> > conservative with one or two drops yesterday and then again

today. I

> > notice that the whole experience has a somewhat mind altering

> effect.

> > Wonder if anyone else has noticed this or is it just me?

>

>

> Hi Jill.

> What do you mean by mind altering? Could you be more specific?

> Thanks,

> Bob

>

[Guest guest]

Hi Bob,yes, very helpful. I backed off 1 drop yesterday and was comfortable last night and feel good this morning. I still cannot get over the odor of the MMS before I mask it with apple juice (no preservatives, no vitamin c).

But I will persevere. The diet is going to improve. My skin feels softer and different somehow too.thanks for replying!daphne

[Guest guest]

MMS oxidizes heavy metals and because of that, the bugs cant use the

metal and it is not held or stored by them.

>

> Hi all

> I have just started taking MMS am at the 3 drop level. Tried 4 but my

> kidneys reacted. I am finding a really strong metallic taste in my

> mouth lasting all day also. Does MMS eliminate metals also?

> Thanks

> Bea

>

[Guest guest]

Has anyone bothered to test her for parasites? I know that's

something many mainstream doctors fail to look into.

cheryl

On Mar 10, 2008, at 12:44 PM, sonia.martinez29 wrote:

> hello, im new here,i have a 11yr old daughter who has many problems

> not

> quite sure what, one doctor told us adhd and another told us mild

> autism. Im thinking about taking her to see dr.G. My main concern with

> her is her weight loss, eating and cronic consitpation. Please help

> fustrated mother.

>

>

>

[Guest guest]

THANK YOU FOR YOUR RESPONSE. NO DOCTOR RECOMMENDED PARASITE TESTING. IS

THERE ANYTHING ELES YOU WOULD RECOMMEND?

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

The fact that she's losing weight and constipated would *really* lead

me to believe parasites. What kind of doctor are you seeing? Are

you seeing a DAN? Mainstream doctor?

Cheryl

On Mar 12, 2008, at 7:27 AM, blozzom1@... wrote:

> THANK YOU FOR YOUR RESPONSE. NO DOCTOR RECOMMENDED PARASITE

> TESTING. IS

> THERE ANYTHING ELES YOU WOULD RECOMMEND?

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

> Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

[Guest guest]

You know, you can test for a couple parasites yourself. This should

*not* replace a lab test, though, as there are many other types of

parasites. But you can test for pinworms by putting a piece of tape

over the anus at bedtime. In the morning, peel the tape off and

check for worms.

cheryl

On Mar 12, 2008, at 10:08 AM, Cheryl Lowrance wrote:

> The fact that she's losing weight and constipated would *really* lead

> me to believe parasites. What kind of doctor are you seeing? Are

> you seeing a DAN? Mainstream doctor?

>

> Cheryl

>

> On Mar 12, 2008, at 7:27 AM, blozzom1@... wrote:

>

> > THANK YOU FOR YOUR RESPONSE. NO DOCTOR RECOMMENDED PARASITE

> > TESTING. IS

> > THERE ANYTHING ELES YOU WOULD RECOMMEND?

> >

> > **************It's Tax Time! Get tips, forms, and advice on AOL

> > Money &

> > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

> >

> >