Re: (unknown)

October 10, 2002

> Welcome to the group. I hope you find the treatment that works for

you.

>

> Chris

Thank you ......

October 10, 2002

FO's only have a shelf life of 9-12 months at the most and then things start

changing., You have to clean out your FO cabinet just like you do your

medicine

chest <g>

Lucinda

Glenbrook Farms Herbs and Such

Bulk Herbs, Spices,fine teas,essential oils and More!

http://www.glenbrookfarm.com/herbs

Peppermint may mask the bad undertones and still keep the spirit of

Christmas. However, if it doesn't smell good it probably isn't good for you

either. It's like trying to put deodorant on when you haven't bathed in a

week. It will leave a lingering subtle distaste to your festivities.

I would rather use a good EO of pine in a fresh carrier base than a FO. I

just don't trust the chemistry of a FO.

Henrietta (Traiteusse)

October 10, 2002

Hi RubbyStar and welcome.

Sorry you have A... glad you found this website!

I had the botox injection several years ago. It did not

do well... I felt no relief. My doctor said that several

of his patients have had success and that this is a

50% success rate. I hope you are one of the successful

patients!! Let us know.

October 10, 2002

In a message dated 10/10/2002 22:31:39 GMT Daylight Time, scottron2@...

writes:

> One more question...Someone posted that their children clear up after 2

> or 3 days on GSE. The pharmacist recommended 4 weeks on GSE, I thought

> that sounded a little long?

>

Hi

One day treatment does for my 5 year old lad now. Some have found (including

me recently) that continued or prolonged use of GSE may be so effective on

yeasts that the gut flora swings the other way and bacteria may flare.

Figuring out the difference is VERY TRICKY (like most of this stuff) and kids

who are sensitive to phenols may also show a reaction to the phenol content

of the GSE.

HTH

Mandi in UK

Recent convert to s 'less maybe more' campaign!

October 11, 2002

Hi Rhonda

Houston's toll free # is: 866-757-8627

Rhonda in CA

October 11, 2002

I was about to start yelling for you!!! How are you doing??? How's the Heart??? Diabetics??? Your blood counts??? And Whatever else you have to deal with Doing??? ) Is work keeping you very busy??? Take care my friend...

((( Worried Hugs )))

Helen

Hello

I don't know about Fibro or RA but I have had my feet and ankles swell

up on me. With me it was CHF secondary to Dilated Cardiomyopathy;

basically my heart was too weak to pump the fluid out of my lower

extremities so they puffed up. At the time I also had problems

breathing when lying down, this was because my heart was also too weak

to pump fluid out of my lungs. I was also very fatigued and could only

walk very slowly.

Regards,

October 14, 2002

Please, for you that are having trouble swallowing, as I have for years, try

drinking a swallow of carbonated water before each bite of food. The

carbonation triggers the esophagus to open, and the food goes down. I am not

having the surgery, until this nolonger works for me. So far, after years of

not being ableto swallow, I now can eat and swallow everything. Try it. It

really works. Marilyn fromLos Angeles

October 14, 2002

Hi Joanne in the desert, Yes I certainly do, although he had no idea until

'me' that it would work as well as it has. Dr. Jerome Goldwasser in the

Cedars Tower by Cedars Sinai Hospital. He cannot believe I am still eating

everything. His number is 310/652-4472. He is my gastroenterologist.( I

think I spelled that right)Let me know. I hope it works for you as well as it

has for me. He said my case of Achalasia is the most extreme he has ever

seen. Marilyn

October 14, 2002

Donna - just wanted to say hello from a fellow Chicago area achalasiac. I've been part of this group since 1999 but do not regularly post messages anymore. If you ever want to contact me directly, my email is chaggas@....

Hope all went well for you at Northwestern.

Take care -

Carol

(unknown)

Hello everyone,I'm new to this list and am so happy I've found you all. From reading a bit of the archives I feel like I've finally found people who can understand what I've been going through the last number of years. I'm sure my story will be familiar to alot of you.About 10 years ago I began having difficulty swallowing. As I swallowed food, occassionally it would become "stuck" and there would be a bit of pain. My Grandmother had had an esophageal dilation about 10 years before my pain started and my family doctor just wrote it off as my having a narrow esophagus like my grandmother. The family doctor said to wait until the pain was too much for me to take anymore and he would send me to someone at that time to do a dilation. It made sense and so I waited.Last August 2001 I came down with yet another bronchial infection and went back to the family doctor. He asked me why I get so many lung infections, and pneumonia about once a year at least. I told him I didn't know...he was the doctor, and I was getting sick of being sick. I also mentioned that the difficulty swallowing has gotten to the point where I've lost 50 lbs in a years time(he said I need to lose the weight anyway so why was I complaining, which is true, but now I'm almost too thin). I also mentioned that the pain when swallowing felt like someone was ripping apart my chest from the inside out. This doctor said I must be stressed (which I don't think I was) and he perscribed more antibiotics for the lung infection and wheezing.In October 2001 I was worse and he said it must be in my head (the pain swallowing) and he sent me to a pshyciatrist. My lungs where still wheezing and he gave me a perscription for more antibiotics.From that time until July I could not even tell you how many times I went back to this doctor, who everyone in my family swore by. He said that it was all just stress related and I must have low immunities - that is why I kept getting infections and pneumonia. During these months I'd also been seen by a very respected pshyciatrist who said it wasn't in my head and except for being depressed because I've been feeling ill for so long without any answers (or anyone believing me it seemed)there was no reason for me to see him. I'd also had the following tests during this time, all of which were negative: EEG, MRI, Chest xrays (many), so much blood work that I'd keep a family of vampires happy for years, 2 upper GIs, and a barium swallow. During the barium swallow I couldn't swallow the barium because of the pain and actually drew blood in my palms from pressing my fingernails into my hands trying to divert the pain. The doctor running the test said that there was nothing wrong, everything was fine.Finally I've gotten to the point that I can't take this anymore at all. In August I called my insurance provider (an HMO) and told them what was happening and that my doctor wouldn't refer me to anyone, but that I NEEDED help. They were actually wonderful and got me in to see Dr Trey at Beth Israel Deaconness Hospital in Boston, MA, USA. Dr Trey has been great and knew right away what the problem was - Achalasia. He scheduled an endoscopy which looked fairly normal, and now I'm to have the manometry & 24 hr PH study on October 14. If the results are as he suspects then he suggests surgery. I hate the thought of surgery, but after reading this list I think it is definately worth it.At this point I have severe pain everytime I swallow. It feels like when I was younger and swallowed an ice cube, before it melted and then it slides down. I've also said that it feels like someone is using a ribspreadder from the inside out. I'm nauseous 24/7. If I bend over even a 1/4 then I get acid or stomach contents in my mouth. When I then stand back up straight I'll go through a series of small rapid burps...those also feel like they are ripping my chest apart. I get this same feeling when I go up stairs or run. I've found that I can swallow those liquid food drinks like Boost or Slim-Fast shakes, but I have to take sips...I've been living on these and thin soups mostly for the last few months. I can't sleep and if I do sleep once I move at all then I wake up with pain and burping. I'm tired all the time and feel really fatigued. Alot of times it feels like I can't even swallow saliva, like it doesn't go down. I haven't been to a restaurant in a year or so, it is always take-out. I also don't eat around anyone except for my husband because it doesn't look too good when you have food stuck and you are pounding on your chest to make it go down. There are times that I feel like I'm drowning. I also have lost alot of my voice which is now rough and gravely. Lately I get short of breath when running (which I have to do for work).Anyway, that is what I've been going through and I'm glad to know that I'm not alone. I do have a couple of questions also. First, when I scheduled the manometry & 24 hr PH study the receptionist said it was very uncomfortable and I wondered what other's have experienced when having this proceedure. Second, has anyone else lost their voice and/or had difficulty breathing when running or during other activities? Third has anyone used Beth Israel Deaconness Hospital or Dr Trey for the surgery to correct this? He comes very highly recommended and I really like him, but of course want to have the best care.Sorry that this is so long, thanks so much for reading this through to the end.Sue in S.E. Massachusetts, USA

October 14, 2002

In a message dated 14/10/2002 17:50:44 GMT Daylight Time,

penny.boehm@... writes:

> Hi,

>

> Can you buy GSE from a health store?

>

Yes, I am in UK but I know of others in US who do this. There is very

informative website at this url about GrapeFruit Seed Extract

http://www.nutriteam.com/index2.html

Good luck!

Mandi in UK

October 14, 2002

In a message dated 10/14/2002 11:50:46 AM Central Daylight Time,

penny.boehm@... writes:

> Can you buy GSE from a health store?

>

Yes, that's where I've gotten mine.

Debbie

October 14, 2002

Hi,

Can you buy GSE from a health store?

On 10/11/02 12:03 AM, " Mum231ASD@... " <Mum231ASD@...> wrote:

> In a message dated 10/10/2002 22:31:39 GMT Daylight Time, scottron2@...

> writes:

>

>> > One more question...Someone posted that their children clear up after 2

>> > or 3 days on GSE. The pharmacist recommended 4 weeks on GSE, I thought

>> > that sounded a little long?

>> >

>

> Hi

> One day treatment does for my 5 year old lad now. Some have found (including

> me recently) that continued or prolonged use of GSE may be so effective on

> yeasts that the gut flora swings the other way and bacteria may flare.

> Figuring out the difference is VERY TRICKY (like most of this stuff) and kids

> who are sensitive to phenols may also show a reaction to the phenol content

> of the GSE.

> HTH

> Mandi in UK

> Recent convert to s 'less maybe more' campaign!

>

October 15, 2002

on 16/10/02 7:10 AM, rhonda m pineau at scottron2@... wrote:

> Well, we went to Olivia's ped appt this morning and needless to say, I

> came away feeling defeated and even more frustrated than I did before I

> went. He totally didn't feel that testing for food allergies was

> accurate, even though I told him my " friend " Dana swears by it. He said

> that if I felt the need to try it then I should just remove dairy

> products for a month and see what happens. Great. He wasn't concerned

> at all with her bm's and pretty much scoffed at the idea of yeast

> overgrowth. (Good thing I didn't mention giving her GSE, eh?). He was,

> however, pretty receptive to the enzymes, go figure. I gave him the 7

> month report but need to give him more info, he wanted to hear from

> someone who didn't believe that enzymes work and hear Devin's response to

> those people. He was also a little weary of Devin due to the fact that

> he runs the show. I think he was alluding to the fact that maybe I was

> being duped but he was still willing to listen. Sooooo...My Zyme Prime

> came in today, thank you Devin, and now I'm not sure what to do. I

> didn't really want to eliminate dairy if I didn't have to, but now I'm

> wondering if maybe I should, I just don't know. But the enzymes are here

> and I'd really like to try them RIGHT NOW. Should I wait and eliminate

> dairy first or just bite the bullet and start them? I'm feeling lost

> again. I went in there feeling so brave and thought I had all my ducks

> in a row and now I'm doubting myself all over again. I hate this. Well,

> not too many questions here, basically just me whining. Any suggestions

> or advice? Thanks for listening.

> Rhonda

>

October 16, 2002

> I'm just getting ready for my final testing tomorrow. I have to get an

emergency bag packed, " just in case " . American hospitals don't give any

help or freebies. No toothbrushes or shampoo, etc. to their patients on a

regular basis. At least not in this area.

No freebies in the UK either!!!!

Good luck - will have positive thoughts for you.

Helen

October 16, 2002

Excuse my English, but damn that substitute. I had one who made get

up in front of the class and tell the whole class was she did on her

spelling test. That day I picked her up at school and she came to the car

crying. I immediately went to the principal and both he and the teacher

denied that it happened. Now of course, he was not in the room so he did

not really know. he just hoped he was right. But as I told him, had

no reason to come crying to the car if it was not true. The way he was

eyeing that teacher, I am sure she got a good talking to. But what right

does any substitute or regular teacher have screwing with a kid's head.

Hey, they did not do well, let's make them feel worse! This is hard on any

kid but one with special problems. Take this information with you to the

doctor, of course. But I would also be on the phone complaining about this

teacher. if a happy face is not in order than keep your pencil off it. No

wonder you child is upset. His day was messed up with his teacher being

gone and this sub has little compassion for a child.

OK, OK, it is a sore spot with me.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

October 16, 2002

Hello Helen

I'm struggling along. I've changed jobs because I had the two offers

on the table, both very good but one was with a company about to go

bankrupt and though I liked working with that group, it was in my best

interest to go with the other company. The other company pays more

anyways and the people there are people that I trained decades ago, they

tell me it's a good work environment so that's what I have to go on.

Anyway because of that, my health insurance is a little bit up in the

air, I had planned for a weeks worth of overlap where in theory I would

have both coverages but in practice I don't have any of the details for

the new plan yet. I've postponed my Cardiologists appointment and have

run out of Hyzaar and Zocor. I'm not worried about the Zocor because I

was taking a very small dosage and it probably wasn't doing much for my

Triglyceride levels anyways (we probably would've changed it to

something else). The Hyzaar, I could probably compensate for with some

more Accupril and the occasional Demadex or Aldactone both of which I

still have a few of.

I had asked the pharmacy to run through their database and refill any

that could be refilled before the old plan lapsed but the idiots just

did the most obvious ones (probably didn't think to page down on the

list). They also took an extra day so I didn't catch the fact that

they were missing the Hyzaar and Zocor till too late.

I seem to have been getting bloated a bit and very tired recently. I

think I need to take a serious break soon. I rest fine when lying on my

back but often if I turn on the side or on my stomach, I would feel like

I needed to vomit. The radio alarm clock hardly wakes me anymore so I

got myself one of those old wind up double bell clocks, the tick tock

doesn't even keep me up much which I found surprising cause when I was

young, the noise would keep me up even if the clock was in another room.

It's about to get real busy here at work, the University is also about

to get real busy too and have been asking me to help out.

I did bring my old ten speed down from Canada and am currently rewiring

the electricals on it. The tail light got damaged in transit but I

found a vintage bicycle shop on the Internet that still sold that style

of light. I'm trying to wire in batteries so that the lights still

work when I'm stopped, it's a bit of a problem in that the dynometer

actually puts out AC power instead of the expected DC so I have to

switch from AC operation when moving to DC operation when stopped.

I tried to get the bicycle specific tools so that I could remove all the

gears and clean them throughly but the bicycle shops say they haven't

seen anything like that bicycle in decades (they would never have had

seen this particular model in the States as it's a purely Canadian bike)

and didn't even know what to order cause their shop tools that fit are

so worn that they can't read the part numbers from them. It was a

rickety hand me down bicycle when I got it 25 years ago, still works great.

I've fitted a modern tool bag and pedestrian bell to it, it's obvious

that the new bicycles have very different geometries in that both the

bag and the bell were not a perfect fit, close but not quite. The tool

kit also has a lot of allen keys which are totally useless on an older

bike and very few spanners which is what's needed.

Hopefully I won't ever get a blown tire on this bike because I doubt

I'll be able to get the right size replacement.

I did do a search on the bicycle model and found it in a Canadian

museum. I wrote the company that made the bike and they said they lost

all the records on that model in 1983 when the original company went

bankrupt.

Regards,

angelbear1129@... wrote:

> *I was about to start yelling for you!!! How are you doing??? How's

> the Heart??? Diabetics??? Your blood counts??? And Whatever else you

> have to deal with Doing??? ) Is work keeping you very busy??? Take

> care my friend...

> ((( Worried Hugs )))

> Helen

> *

>

>> Hello

>>

>> I don't know about Fibro or RA but I have had my feet and ankles swell

>> up on me. With me it was CHF secondary to Dilated Cardiomyopathy;

>> basically my heart was too weak to pump the fluid out of my lower

>> extremities so they puffed up. At the time I also had problems

>> breathing when lying down, this was because my heart was also too weak

>> to pump fluid out of my lungs. I was also very fatigued and could only

>> walk very slowly.

>>

>> Regards,

>>

>

> *

> * ...

October 16, 2002

Vicci:

I am sorry your son had to go through that with the teacher. Unfortuneately

sometimes these subs are called in a split moment with no instructions or

info on our kids. My son has always had difficulty with new teachers

sent in to work with him.....change in the routine, new methods etc.....it is

stressful on them.

Stress triggers certain behaviors in my son. can go days and weeks

without incidents or unusual behaviors BUT if he is stressed behaviors appear

and like you when I was going through my period of " what is really wrong

here " ....when I was questioning his diagnosis or dead set on this is how he

acts most of the time.....it would times like had that would remind me

of issues had. If that makes sense! would go weeks and then

stress would trigger him to display stimming behaviors, and these to left as

quick as they came.

Obviously this teacher confused and caused him to become stressed, it

sounds like he had a stressful day and could not focus on his meeting.

This is an excellent example to discuss at your next appointment.!!!!!!!

Debbie in Pa/ pdd-nos age 7

capajravelle wrote:

> Hello,

>

> Have you ever noticed that, just when you've made up your mind about

> something, your kid goes and does something to make you rethink it

> all again? That describes today for me (or would that be yesterday?).

> We finally decided that we had all figured out and life was

> going to be a little easier with him from now on. We would get our

> final " naysay " from the final doctor and be done with all this mess.

> But nooooo, had to have a substitute teacher today. It threw

> him all out of whack. His school work was a mess,erased and rewritten

> at least 3/4 times, and the substitute even put a frown face on it

> and large, red X's. He was so upset when he got home, he tried to rip

> up his papers. I managed to convince him that I wanted to keep them

> and that he should go outside and run a bit. This usually makes him

> feel better. He was even able to play nicely with his one friend. But

> the worst was yet to come. Tonight was the cub scout pack meeting,

> something usually looks forward to and enjoys. But not

> tonight's. He spent about 15 minutes of the meeting spinning in the

> corner and another 20 minutes of it tuned out, playing with his mouth

> and lips. He was gone, in his own little world, while the other boys

> were actively participating in the activities. This was stuff we

> thought was gone for good and then, wham!, there it is again. It is

> times like these that I wish the " experts " could see.

>

> Oh well, back to the drawing board.

>

> Vicci

>

October 16, 2002

Vicci:

I suggest you take the time to document this entire day's activities, and

's reactions as a result. It's important to get a " witness statement "

as soon as possible after the incident.

Secondly, school did a big boo-boo here. No preparation has obviously been

made for to transition to having a substitute teacher. (And, you

know what, I'm not even going to address the substitute teacher, other than

to say I'd like to put a big red " X " someplace and then place the red pen in

that " X " so that she can have her own little frown....). There needs to be

preparation for (a) change in routine; ( strangers; and © for the

special ed teacher, or the SLP, to spend a little extra time with on

days where his routine is suddenly changed. In addition, the regular ed

teacher needs to leave instructions re: in her emergency substitute

plans.

Sounds like our was a little shell shocked after such a bad day. No

wonder he didn't have a good time at scouts. Although, he probably needed

that time in his own little world to decompress from his frustrating day.

Thirdly, I'd call for an IEP meeting as soon as possible. Give them your

statement (make sure you have it cleaned up so that a lot of the emotional

comments are out -- you know, those comments we Mommies make when we're

completely ticked off when someone has mistreated our child). Tell them

that a plan needs to be introduced and implemented immediately for

substitute teacher days. Then, work on that plan together and to make sure

it's implemented have them send home whatever they'll use (I'm thinking

social story, as that's what's worked for Shelby in this very same

situation) so you can reinforce it at home. Then, if there's another bad

day with a sub you can ask the team if they reviewed the social story with

and if the sub is aware of 's special needs.

I know it's a lot of work, but evidently a Mom's gotta do what a Mom's gotta

do. I hope I've helped.

Missy in Md.

(unknown)

Hello,

Have you ever noticed that, just when you've made up your mind about

something, your kid goes and does something to make you rethink it

all again? That describes today for me (or would that be yesterday?).

We finally decided that we had all figured out and life was

going to be a little easier with him from now on. We would get our

final " naysay " from the final doctor and be done with all this mess.

But nooooo, had to have a substitute teacher today. It threw

him all out of whack. His school work was a mess,erased and rewritten

at least 3/4 times, and the substitute even put a frown face on it

and large, red X's. He was so upset when he got home, he tried to rip

up his papers. I managed to convince him that I wanted to keep them

and that he should go outside and run a bit. This usually makes him

feel better. He was even able to play nicely with his one friend. But

the worst was yet to come. Tonight was the cub scout pack meeting,

something usually looks forward to and enjoys. But not

tonight's. He spent about 15 minutes of the meeting spinning in the

corner and another 20 minutes of it tuned out, playing with his mouth

and lips. He was gone, in his own little world, while the other boys

were actively participating in the activities. This was stuff we

thought was gone for good and then, wham!, there it is again. It is

times like these that I wish the " experts " could see.

Oh well, back to the drawing board.

Vicci

October 16, 2002

Sounds like you need to take a few DEEP BREATHS!!! IN!! OUT!! IN!! OUT!!! Now, you had better slow down a little bit, you sound like you are stretched to the max!!!

I'm so sorry that you are having so many problems with your insurance companies... Can you get a hold of your dr. and explain it to him and see if you can get some samples from him of the meds that you need??? Has the insurance company let you know about anything yet??? Even though you don't have your paper work, they should still honor your scripts shouldn't they??? Your dates will or should show up in the computers for them... I Knew I was worried about you for a good reason!!!

Any alarm, scares me to death when it goes off!!! Especially those old bell ones!!! My heart does a Lot of flip flops and takes me over an hour to get it calmed back down...

I'm glad that you got a better paying job, but I so wish you didn't have to delay your cardiologist appointment ;o( Keep us posted as to how you are doing, OK???

Glad that your bike doesn't need too many repairs... Maybe an antique shop would have what you need...

You rest as best as you can... don't go too long without seeing your Dr., OK???

(((Caring and Worried Hugs )))