For

[Guest guest]

, our situations sound very similar. As I said, I

am in a " step " position; and my step-mom and

step-sister have always been close, and then I was on

the outside. I hesitated to even tell my step-mom

about the diagnosis because I knew I would feel

" rejected " once again. It has always been that way.

One time when I had surgery I wasn't even going to

tell them, but my DH called them because he thought

they should know.

I hope you have friends & family nearby who love and

support you. As I said, I am so thankful for my DH.

He gives me so much love and support and my daily goal

is to give it back to him double!

It is so neat about the student coming back to you!

That took a lot of courage and what a gift to you!

Teddy Bear Hugs,

Verna

__________________________________________________

[Guest guest]

In a message dated 5/15/01 11:24:41 AM Central Daylight Time,

kwpatb@... writes:

<< I find everyone

compares their OA arthrirtis to my RA and they are just not the same >>

isn't this the truth!!! oh i have arthritis too!!! think they want to

trade???

kathy

[Guest guest]

Oh Kathy,

That is so true, my mother does it constantly. She has OA and whenever I

talk about trying for the right combination to control my RA, she tells me

how I just need to adjust my life to deal with my limitations. Well, I

have. I don't volunteer for anything which was a major part of my life but

I still have 5 children, a husband, craft interests, friends, pets-many. And

I'm not ready to give it ALL up. I am currently using a walker but a

wheelchair wouldn't help because my wrists hurt as much as my legs. The

chronic fatigue is back, it was gone for a few days. Now cancer to add to

everything else!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

[Guest guest]

Hi ,

You seem to have covered all of your bases with your son and his therapies,

that is wonderful. The only other suggestion I can think of is the GFCF

diet. It is proving to be quite successful for a number of children who have

autism, PDD, etc. You can read about it at www.gfcfdiet.com

There is also a wonderful message board with a link on that page for support

and to ask questions.

My 2.5 year old son has been on this diet for nearly one year. The progress

he has made has been very well. He was never diagnosed with autism, and I

credit this to the diet, and various supplements as well as therapies. At

this point in time, he only has Apraxia.

If you are interested, please check it out, it may be something helpful to

your boy.

[Guest guest]

Hi ,

I'm still working hard on getting my school going. Do you know if there are

any figures on numbers of kids with apraxia or even severe communication

disorders? I'd like by state and within regions within states, but I need

figures of some sort to let funders know the scope of the problem. I'm

hitting deadends in locating any of these figures.

Thanks!

Melinda

[Guest guest]

i think zinc monomethionine is the same thing

to be honest i haven't tried the methionine yet, am about to order it

but there was a big discussion on the pfeiffer board once and there

was a concurrance of the suitability of this form for absorbtion.

they are both amino acids so probably could be mixed, the limitation

of zinc picolinate is it gives me migraines after a while which i

relate to some satureted fats or vlcfa problem

--- In , " tinalunabean " <lolabryn@a...>

wrote:

> You have mentioned zinc methionine a few times. Can zinc methionine

> and zinc picolinate be mixed together? Or maybe alternated weekly?

> And I have zinc monomethionine, is that the same thing? Thanks. Tina

[Guest guest]

Any letters or attachments posted on the group will be available on the net. The only way to share a picture of your son with group members, without it being on the net, is to email them privately.

Patty

[Guest guest]

You think that detox program that you are on is easy?? It sounds so complicated to me! You really have it together! I wish you lived in Las Vegas so that we could go health food shopping together. I don't know what brands to get, but you sound like you know all your products.

Could you send me a list of what you are using for Candida? Are you still taking the low dose of antibiotics? If not, how long did you take them for? Did you take them while you were detoxing or is it better to do one at a time?

What are you eating now?

I am so proud of you, I love the way that you give such great advice to us. Thank you for being on the group, you really make a difference.

Love, Daryl

RE Patty Flax oil > > > Hello there Patty, I use Barleans' (highest lingnan)Flax Oil. Cold > pressed 100% organic. IT comes in a black bottle, and is kept in the > fridge. I find it does not go bad/sour. I take 2 tablespoons per day. > It is DEFINATLY one supplement I am planning to keep in my diet for a > long time! Even though I am loosing so much hair it is , it has made > my hair look healthier and shiner for sure. I also think it is > helping me with my pain. You can get it in a health food store OR > here is the number 1-800-445-3529. OR go to www.barleans.com > Also I have been eating 2 tablespoons of the coconut oil a day, and > like it! I use it as a moisterizer on my skin also. Scince I have > been using it, my nails have grow SO STRONG and long! I don't know if > it is from eating it, or rubbing it on my hands. It is always so nice > when you buy a product, and you actually see the results! > Hugs and many thanks to you. dimonds > > > > >

[Guest guest]

Dear :

Hi! I'm sorry, I can't help you I have absolutely no idea about your medical condition, but if you're having sinus problems, I recommend seeing an ENT Otolaryngologist. I had sinus problems causing big time headaches and had to have corrective surgery and now I'm OK.

As for taking anti-fungals, my endocrinologist says to be very conservative taking these as abuse of this medicine can destroy good bacterias or something (in the gut and colon) and the side effects can be pretty bad. Ditto for antibiotic over use.

Have you tried Lamisil for your toes?

Hugs to you too.

A

[Guest guest]

Randall,

It makes me physically ill to hear that you have been physically ill over this whole ordeal. I am so so sorry that you have been hurt by this. I felt as though and I were being hurt but I see that we are not the only ones. I want to apologize for hurting you in any way.

I also must add, without going into details and turning it into a "he said, she said" fiasco which is something I never intended to do and am very pleased that you refrained from doing in your response - that if I had felt I was able to continue the discussion and resolve it with you at that time, I surely would have. As it was, I could not have said one more word without bursting into tears, which I promptly did when I left your office. I was not sure about what the next steps were to take - after the responses on this forum the first day, and after the visit, I did plan on calling back and cancelling the appt - which I have not done yet but will do come Monday. I did not know where to go from there and was deeply frustrated that my son was the one losing out - he is the one missing the precious banding time becuase we will leave on our trip before this can be sorted out, I'm almost sure of it.

I also wanted to thank you for addressing the e-mail message to - I think it's a very wise thing to do, and reminds us all that this IS about the children. I would like to write more about this when I have more time. I just came home quick to grab more diapers and clothing, is at the hospital right now, he had about a dozen seizures yesterday, we are trying to get him on some medication and stabilize him. I look forward to hearing from other's about what their viewpoints are, that is why I responded to the whole plagiocephaly group. I am glad that you wrote, and I have already learned more about plagiocephaly and the politics surrounding it in the past week than I ever imagined I would.

I feel ashamed that your feelings were hurt. But looking back, I do not see anything I would have done differently. I will continue to mull over this whole experience and I appreciate your letter very much, as I'm sure would too. I do plan to write more of a response when our hospital visit is over.

Margy

mom to

12.08.02

[Guest guest]

will be in my prayers tonight, hope you have him home soon,

Natasha

> Randall,

> It makes me physically ill to hear that you have been physically

ill over

> this whole ordeal. I am so so sorry that you have been hurt by

this. I felt as

> though and I were being hurt but I see that we are not the

only ones.

> I want to apologize for hurting you in any way.

> I also must add, without going into details and turning it into

a " he said,

> she said " fiasco which is something I never intended to do and am

very pleased

> that you refrained from doing in your response - that if I had felt

I was able

> to continue the discussion and resolve it with you at that time, I

surely

> would have. As it was, I could not have said one more word without

bursting into

> tears, which I promptly did when I left your office. I was not

sure about

> what the next steps were to take - after the responses on this

forum the first

> day, and after the visit, I did plan on calling back and cancelling

the appt -

> which I have not done yet but will do come Monday. I did not know

where to go

> from there and was deeply frustrated that my son was the one losing

out - he

> is the one missing the precious banding time becuase we will leave

on our trip

> before this can be sorted out, I'm almost sure of it.

> I also wanted to thank you for addressing the e-mail message to

- I

> think it's a very wise thing to do, and reminds us all that this IS

about the

> children. I would like to write more about this when I have more

time. I just

> came home quick to grab more diapers and clothing, is at

the hospital

> right now, he had about a dozen seizures yesterday, we are trying

to get him

> on some medication and stabilize him. I look forward to hearing

from other's

> about what their viewpoints are, that is why I responded to the

whole

> plagiocephaly group. I am glad that you wrote, and I have already

learned more about

> plagiocephaly and the politics surrounding it in the past week than

I ever

> imagined I would.

> I feel ashamed that your feelings were hurt. But looking back, I

do not see

> anything I would have done differently. I will continue to mull

over this

> whole experience and I appreciate your letter very much, as I'm

sure

> would too. I do plan to write more of a response when our hospital

visit is over.

>

> Margy

> mom to

> 12.08.02

[Guest guest]

Mine too Margy, please let us know how he's doing.

> > Randall,

> > It makes me physically ill to hear that you have been physically

> ill over

> > this whole ordeal. I am so so sorry that you have been hurt by

> this. I felt as

> > though and I were being hurt but I see that we are not

the

> only ones.

> > I want to apologize for hurting you in any way.

> > I also must add, without going into details and turning it into

> a " he said,

> > she said " fiasco which is something I never intended to do and

am

> very pleased

> > that you refrained from doing in your response - that if I had

felt

> I was able

> > to continue the discussion and resolve it with you at that time,

I

> surely

> > would have. As it was, I could not have said one more word

without

> bursting into

> > tears, which I promptly did when I left your office. I was not

> sure about

> > what the next steps were to take - after the responses on this

> forum the first

> > day, and after the visit, I did plan on calling back and

cancelling

> the appt -

> > which I have not done yet but will do come Monday. I did not

know

> where to go

> > from there and was deeply frustrated that my son was the one

losing

> out - he

> > is the one missing the precious banding time becuase we will

leave

> on our trip

> > before this can be sorted out, I'm almost sure of it.

> > I also wanted to thank you for addressing the e-mail message to

> - I

> > think it's a very wise thing to do, and reminds us all that this

IS

> about the

> > children. I would like to write more about this when I have

more

> time. I just

> > came home quick to grab more diapers and clothing, is at

> the hospital

> > right now, he had about a dozen seizures yesterday, we are

trying

> to get him

> > on some medication and stabilize him. I look forward to hearing

> from other's

> > about what their viewpoints are, that is why I responded to the

> whole

> > plagiocephaly group. I am glad that you wrote, and I have

already

> learned more about

> > plagiocephaly and the politics surrounding it in the past week

than

> I ever

> > imagined I would.

> > I feel ashamed that your feelings were hurt. But looking back,

I

> do not see

> > anything I would have done differently. I will continue to mull

> over this

> > whole experience and I appreciate your letter very much, as I'm

> sure

> > would too. I do plan to write more of a response when our

hospital

> visit is over.

> >

> > Margy

> > mom to

> > 12.08.02

[Guest guest]

Margy,

and you will be in my prayers. I hope he comes home soon. How

is he doing? Give him a kiss from all of us.

> Randall,

> It makes me physically ill to hear that you have been physically

ill over

> this whole ordeal. I am so so sorry that you have been hurt by

this. I felt as

> though and I were being hurt but I see that we are not the

only ones.

> I want to apologize for hurting you in any way.

> I also must add, without going into details and turning it into

a " he said,

> she said " fiasco which is something I never intended to do and am

very pleased

> that you refrained from doing in your response - that if I had felt

I was able

> to continue the discussion and resolve it with you at that time, I

surely

> would have. As it was, I could not have said one more word without

bursting into

> tears, which I promptly did when I left your office. I was not

sure about

> what the next steps were to take - after the responses on this

forum the first

> day, and after the visit, I did plan on calling back and cancelling

the appt -

> which I have not done yet but will do come Monday. I did not know

where to go

> from there and was deeply frustrated that my son was the one losing

out - he

> is the one missing the precious banding time becuase we will leave

on our trip

> before this can be sorted out, I'm almost sure of it.

> I also wanted to thank you for addressing the e-mail message to

- I

> think it's a very wise thing to do, and reminds us all that this IS

about the

> children. I would like to write more about this when I have more

time. I just

> came home quick to grab more diapers and clothing, is at

the hospital

> right now, he had about a dozen seizures yesterday, we are trying

to get him

> on some medication and stabilize him. I look forward to hearing

from other's

> about what their viewpoints are, that is why I responded to the

whole

> plagiocephaly group. I am glad that you wrote, and I have already

learned more about

> plagiocephaly and the politics surrounding it in the past week than

I ever

> imagined I would.

> I feel ashamed that your feelings were hurt. But looking back, I

do not see

> anything I would have done differently. I will continue to mull

over this

> whole experience and I appreciate your letter very much, as I'm

sure

> would too. I do plan to write more of a response when our hospital

visit is over.

>

> Margy

> mom to

> 12.08.02

[Guest guest]

I will second Stacey's response, I am also thinking of you and , hope he is feeling better soon.

and Angelina in Canada

-----Original Message-----From: stripes6060 [mailto:taime@...]Sent: Saturday, June 26, 2004 9:47 PMPlagiocephaly Subject: Re: For Margy, and you will be in my prayers. I hope he comes home soon. How is he doing? Give him a kiss from all of us.> Randall,> It makes me physically ill to hear that you have been physically ill over > this whole ordeal. I am so so sorry that you have been hurt by this. I felt as > though and I were being hurt but I see that we are not the only ones. > I want to apologize for hurting you in any way.> I also must add, without going into details and turning it into a "he said, > she said" fiasco which is something I never intended to do and am very pleased > that you refrained from doing in your response - that if I had felt I was able > to continue the discussion and resolve it with you at that time, I surely > would have. As it was, I could not have said one more word without bursting into > tears, which I promptly did when I left your office. I was not sure about > what the next steps were to take - after the responses on this forum the first > day, and after the visit, I did plan on calling back and cancelling the appt - > which I have not done yet but will do come Monday. I did not know where to go > from there and was deeply frustrated that my son was the one losing out - he > is the one missing the precious banding time becuase we will leave on our trip > before this can be sorted out, I'm almost sure of it.> I also wanted to thank you for addressing the e-mail message to - I > think it's a very wise thing to do, and reminds us all that this IS about the > children. I would like to write more about this when I have more time. I just > came home quick to grab more diapers and clothing, is at the hospital > right now, he had about a dozen seizures yesterday, we are trying to get him > on some medication and stabilize him. I look forward to hearing from other's > about what their viewpoints are, that is why I responded to the whole > plagiocephaly group. I am glad that you wrote, and I have already learned more about > plagiocephaly and the politics surrounding it in the past week than I ever > imagined I would.> I feel ashamed that your feelings were hurt. But looking back, I do not see > anything I would have done differently. I will continue to mull over this > whole experience and I appreciate your letter very much, as I'm sure > would too. I do plan to write more of a response when our hospital visit is over.> > Margy> mom to > 12.08.02For more plagio info

[Guest guest]

Margy

I will be including into my prayers, and I hope that he will

be able to come home soon.

Sandy Willow's Mom

> > Randall,

> > It makes me physically ill to hear that you have been physically

> ill over

> > this whole ordeal. I am so so sorry that you have been hurt by

> this. I felt as

> > though and I were being hurt but I see that we are not

the

> only ones.

> > I want to apologize for hurting you in any way.

> > I also must add, without going into details and turning it into

> a " he said,

> > she said " fiasco which is something I never intended to do and

am

> very pleased

> > that you refrained from doing in your response - that if I had

felt

> I was able

> > to continue the discussion and resolve it with you at that time,

I

> surely

> > would have. As it was, I could not have said one more word

without

> bursting into

> > tears, which I promptly did when I left your office. I was not

> sure about

> > what the next steps were to take - after the responses on this

> forum the first

> > day, and after the visit, I did plan on calling back and

cancelling

> the appt -

> > which I have not done yet but will do come Monday. I did not

know

> where to go

> > from there and was deeply frustrated that my son was the one

losing

> out - he

> > is the one missing the precious banding time becuase we will

leave

> on our trip

> > before this can be sorted out, I'm almost sure of it.

> > I also wanted to thank you for addressing the e-mail message to

> - I

> > think it's a very wise thing to do, and reminds us all that this

IS

> about the

> > children. I would like to write more about this when I have

more

> time. I just

> > came home quick to grab more diapers and clothing, is at

> the hospital

> > right now, he had about a dozen seizures yesterday, we are

trying

> to get him

> > on some medication and stabilize him. I look forward to hearing

> from other's

> > about what their viewpoints are, that is why I responded to the

> whole

> > plagiocephaly group. I am glad that you wrote, and I have

already

> learned more about

> > plagiocephaly and the politics surrounding it in the past week

than

> I ever

> > imagined I would.

> > I feel ashamed that your feelings were hurt. But looking back,

I

> do not see

> > anything I would have done differently. I will continue to mull

> over this

> > whole experience and I appreciate your letter very much, as I'm

> sure

> > would too. I do plan to write more of a response when our

hospital

> visit is over.

> >

> > Margy

> > mom to

> > 12.08.02

[Guest guest]

Thanks Anita! Love

For

http://www.hsibaltimore.com/ea2004/ea_040519.shtml

I see the other link I sent you didn't work . I tried this one and it worked. Love, Anita

[Guest guest]

Dear Gloria,

Re: suggested food sensitivity

I have received your message and I do thank you for it.

I have added your suggestion to my topics in process, and I will

make use of it the best I can.

The way I know myself food is not the cause (unless I would do

something really bad - which I don't ... ). Beside the sitting pain

however time and time again (chronic /old) hemorrhoid problems

surface, etc, etc . Foods again DOES play a factor with hemorrhoids,

etc,

Considering the latest postings regarding impact of surgeries (and

trauma in general I would add - which I caused by prolonged sitting

and chronic improperly healed hemorrhoid problems ...) might be a

cause for chronic, slowly spreading inflammation in the area ... I

shall develop more on this topic ...

Regarding CFS /Fibromyalgia symptoms, if I really belong into this

category, to my current knowledge best can be addressed with

something like Marshall Protocol, and other CFS /

Fibromyalgia /other diagnostics and resources that I am not aware as

of yet ...

Keep in touch,

(PS: I work around the clock starting Aug 2004 to involve myself

personally in the diagnostic and treatment process, since doctors

failed to succeed over the last two years ...)

My online diagnostic page (way behind from where I wanted it to

be ...) is at

http://www.philfrisk.net/~adrian/

> ,

> Have you investigated food sensitivity? That could cause many of

the symptoms

> you mentioned. If you have not tried a rotation diet, it might be

worth

> exploring. Try to strive for eating a particular food/food family

only once in a 4

> day cycle. Keep a record of how you feel after each meal...ideally

eat only

> one food substance at a time and wait 10 minutes to see if you

feel differently

> after consuming it. Your heartrate can be a good indicator of

whether or not

> you are reacting to a food. Food sensitivities are a huge issue

with my

> daughter. Good Luck. I hope you find some answers.

> Gloria

> " A dream is in the mind of the believer, and in the hands of the

doer "

> " You are not given a dream, without being given the power to make

it come

> true. "

>

>

>

[Guest guest]

Where can I find out more about "icy hot?"

SGA

[Guest guest]

thk's a lot a kiss from Paris for u'r help>>, sometimes people experience old symptoms while taking LDN, perhaps >because of stress, weather, illness, surgery, diet, etc. If you haven't >experienced new symptoms, then as far as I know, you haven't progressed. >Many of us have gone through the same thing. Hang in there.>> >>>>-- >No virus found in this outgoing message.>Checked by AVG Anti-Virus.>Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 2/3/2005>>>>

[Guest guest]

>

> I have finished my IV steroid today and will start 4.5 mg LDN tonite, right?

> Thanks for all your help. U

=========

Start 4.5mg LDN ASAP(As Soon As Possible).

[Guest guest]

I did go off the Avonex for about a month and got pretty bad again MS-wise. I did some research and found they believe now that interferons actually increase endorphins as well. Then I came across other MSers who were doing both meds and did better on the combination as well. To be honest, I have a science background and couldn't put my health in the hands of theory alone. I'll do this for awhile and see what happens in the future. I may decide to do the LDN alone but for now, I can't argue with the success I'm having and don't want to jeopardize it.

[Guest guest]

I was surprised too , but if you are doing great, I can't argue with

that. Perhaps however it would be good to check in with your doctor about

trying to wean off of the Avonex at some point, and see what happens. But

only do what makes you feel comfortable and listen to your body.

Aletha

[low dose naltrexone] For

> , I was a little surprised to hear that you're taking LDN with

> Avonex,

> because they work against each other. LDN boosts the immune system, while

> Avonex suppresses it. The only ABCR drug that Dr. Bihari thinks won't do

> that is Copaxone, because it works differently than the interferon drugs.

> Perhaps other people can explain this better...

>

>

>

>

>

>

>

>

[Guest guest]

Just remember there is a possibility LDN can help symptoms while on interferons

but you may not be protected from progression by combining the two. It's sort

of like driving the Indy 500 with one foot pressing the accelerator and the

other foot pressing the brake at the same time.

[Guest guest]

Hey there Tracey, You are soooooo right. There is indeed beauty all around us, peace, and joy, even contentment in the most trying of circumstances. Thank you so much for your encouragement! You are (you ALL are) such a blessing to our lives! Peace, love, laughter Rainbow Egret <egret.09@...> wrote: Hi Thanks again for your kind words. I truly hope you find a new home shortly my thoughts are with you both. Chin up and remember all the beauty of the earth around you. And no I haven't seen that movie but I have heard about it. Many Blessings Tracey

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Hi Wesley, Its amazing how a small dose can cause side effects. I

also had the sleep disturbances for about the first 2 weeks. The

vivid dreams continued but it wasn't an issue.

I'm feeling very crappy now with a cold. Once its gone and I feel

better I will think about trying again.

Thanks!

Take Care

>

> , I can second the notion that small changes in dosage *can*

make

> a big difference. I started LDN taking 3.0 mg dissolved in water

and it

> was causing *horrible* joint pain, elbows especially, bizarre sleep

and

> a drugged sleepy feeling that lasted most of the day.