Thanks

[Guest guest]

,

Thanks for the info. I had not thought of that.

- Mom to in Texas

You can also have your ped or you can refer to the Early Intervention Program.

[Guest guest]

I just had to 2nd this idea. Trentyn had all of his PT for the tort

done through ECI. They came right to our house, which was a godsend.

She released him from the PT for his tort just a few weeks ago. And

it is free!

Jen- TX

Trentyn- 17 mo. DocBand 06/12/03 & 09/17/03

> ,

> You can also have your ped or you can refer to the Early

Intervention Program. Most babies with tort do qualitfy and the

physical therapist will come right to you home. Jordan has PT 3x a

week and OT twice a week and I would have gone completely nuts if we

didn't have in home therapy through EI.

>

> ~~Buffalo, NY

> Mama to:

> , Jordan (cranio,plagio & tort~Starband 10-24-03) &

>

>

> We will be starting PT at Children's very soon, my concern is

mine and my husband's ability to get him there. It is so far away.

We are definitely going for the initial eval and then considering an

aggressive treatment program for the tort at home with me doing the

treatments. I am an Occupational Therapist and work with adults with

orthopedic injuries. There is a peds. therapy clinic in Waxahachie

which is only 15 mins. away. I am considering requesting a referral

to there at least till the end of the year. I'm not really sure.

[Guest guest]

HOLY SMOKES BATMAN!! Girl, we are way close Jr.!!! I work in

Waxahachie (born and raised) and I now live in Milford!! What a

small world!! hehehehehehe!! I have a close plagio friend!

, is your ped in Ennis? If so, is it Dr. Sache or on?

If it is Dr. Sache, he referred another one of my friends baby

because of plagio and possible tort. Luckily, he didn't have tort

but is in a band now and about to graduate in a few short weeks. I

look forward to talking with you more. If I can do anything, just

give me a hollar.

Dustie, in Milford!! hehehe

> Thanks to everyone for such a grand welcome. I feel extremely

fortunate to have found such a wonderful group.

>

> Dustie and Jen, we live in Ennis, which is about 30 to 35 mins.

south of Dallas on I 45. Our ped. referred us to Dr. Hobar and we

met with the nurse practitioner Trish on. We were very

impressed. Mainly because of the options she gave us and all the

information.

>

> I am considering us lucky with regards to our ped. The funny thing

is, I never have really valued his opinion regarding my children -

till now. I have one other son, who is 6 years old and we have had a

lot of difficulty with our ped. giving us the referrals we need for

allergy problems. But with , he was extremely proactive. I did

not even really notice that his head was flat on one side. I noticed

the favoring to the right, but just assumed he had a really

overactive reflex response and that as soon as the reflex integrated

he would not favor the right so much. He told us that he wanted to

go ahead and have us see a specialist so that we could address the

problem early and make it through the treatment process sooner. I'm

considering sending him a huge basket of goodies as thanks for being

so proactive.

>

> We will be starting PT at Children's very soon, my concern is mine

and my husband's ability to get him there. It is so far away. We

are definitely going for the initial eval and then considering an

aggressive treatment program for the tort at home with me doing the

treatments. I am an Occupational Therapist and work with adults with

orthopedic injuries. There is a peds. therapy clinic in Waxahachie

which is only 15 mins. away. I am considering requesting a referral

to there at least till the end of the year. I'm not really sure.

>

> I have been on maternity leave the last 11 weeks and start back to

work this coming Monday. So many changes and it seems that

knows that everything is changing and different. He has been so

fussy today and he is so tired of us moving his head and

repositioning him every few minutes.

>

> Hoping for a better day tomorrow,

> , mom of in Texas

[Guest guest]

Dustie

Guess there are several of us all in the same general area. I grew

up in Coppell and now live in North Irving.

I bought my Shih Tzu (my first baby) from a lady in Waxahachie a few

years ago- Dindot, a preacher's wife. She breeds them.

You're right...small world.

& Jordyn (DOCband 10/13)

> > Thanks to everyone for such a grand welcome. I feel extremely

> fortunate to have found such a wonderful group.

> >

> > Dustie and Jen, we live in Ennis, which is about 30 to 35 mins.

> south of Dallas on I 45. Our ped. referred us to Dr. Hobar and we

> met with the nurse practitioner Trish on. We were very

> impressed. Mainly because of the options she gave us and all the

> information.

> >

> > I am considering us lucky with regards to our ped. The funny

thing

> is, I never have really valued his opinion regarding my children -

> till now. I have one other son, who is 6 years old and we have had

a

> lot of difficulty with our ped. giving us the referrals we need for

> allergy problems. But with , he was extremely proactive. I

did

> not even really notice that his head was flat on one side. I

noticed

> the favoring to the right, but just assumed he had a really

> overactive reflex response and that as soon as the reflex

integrated

> he would not favor the right so much. He told us that he wanted to

> go ahead and have us see a specialist so that we could address the

> problem early and make it through the treatment process sooner.

I'm

> considering sending him a huge basket of goodies as thanks for

being

> so proactive.

> >

> > We will be starting PT at Children's very soon, my concern is

mine

> and my husband's ability to get him there. It is so far away. We

> are definitely going for the initial eval and then considering an

> aggressive treatment program for the tort at home with me doing the

> treatments. I am an Occupational Therapist and work with adults

with

> orthopedic injuries. There is a peds. therapy clinic in Waxahachie

> which is only 15 mins. away. I am considering requesting a

referral

> to there at least till the end of the year. I'm not really sure.

> >

> > I have been on maternity leave the last 11 weeks and start back

to

> work this coming Monday. So many changes and it seems that

> knows that everything is changing and different. He has been so

> fussy today and he is so tired of us moving his head and

> repositioning him every few minutes.

> >

> > Hoping for a better day tomorrow,

> > , mom of in Texas

[Guest guest]

--I know where you are coming from! It was a big adjustmet

for Gus when I went back to work and he started daycare. Don't worry-

-it will all " flow " very soon. For me, going back to work was

actually a good thing--the schedule and regularity of everything

really helped me. I am a PT & Athletic Trainer (also in ortho/sports

med)--the hardest thing with the plagio is getting off work,

rescheduling, and canceling patients to get to all of Gus'

appointments. There is no other way of putting it than it being a

huge pain (which, of course, I feel guilty about). My supervisors

have " talked " to me about missing work and to see if I could make it

up somehow. I got all upset about it, but then realized that if they

want me to work here, they will deal with it--and really it's been

fine and now we are getting near the end. You are VERY lucky to have

started your " journey " early since hopefully it won't take nearly as

long to get the results, and you will be good at doing the stretches.

Sounds like you already have a good plan and a good ped. I will be

thinking about you on Monday! Don't worry--every day will get

better!!

Kim--Gus' mom

DOC Band 8/21/03

> Thanks to everyone for such a grand welcome. I feel extremely

fortunate to have found such a wonderful group.

>

> Dustie and Jen, we live in Ennis, which is about 30 to 35 mins.

south of Dallas on I 45. Our ped. referred us to Dr. Hobar and we

met with the nurse practitioner Trish on. We were very

impressed. Mainly because of the options she gave us and all the

information.

>

> I am considering us lucky with regards to our ped. The funny thing

is, I never have really valued his opinion regarding my children -

till now. I have one other son, who is 6 years old and we have had a

lot of difficulty with our ped. giving us the referrals we need for

allergy problems. But with , he was extremely proactive. I did

not even really notice that his head was flat on one side. I noticed

the favoring to the right, but just assumed he had a really

overactive reflex response and that as soon as the reflex integrated

he would not favor the right so much. He told us that he wanted to

go ahead and have us see a specialist so that we could address the

problem early and make it through the treatment process sooner. I'm

considering sending him a huge basket of goodies as thanks for being

so proactive.

>

> We will be starting PT at Children's very soon, my concern is mine

and my husband's ability to get him there. It is so far away. We

are definitely going for the initial eval and then considering an

aggressive treatment program for the tort at home with me doing the

treatments. I am an Occupational Therapist and work with adults with

orthopedic injuries. There is a peds. therapy clinic in Waxahachie

which is only 15 mins. away. I am considering requesting a referral

to there at least till the end of the year. I'm not really sure.

>

> I have been on maternity leave the last 11 weeks and start back to

work this coming Monday. So many changes and it seems that

knows that everything is changing and different. He has been so

fussy today and he is so tired of us moving his head and

repositioning him every few minutes.

>

> Hoping for a better day tomorrow,

> , mom of in Texas

[Guest guest]

Hi all,

I have personally thanked and , but I am so thankful for this

group of people that understand and give such practical advice! Because you

all have been there too (at least one or two share an experience) I often

feel like I am sitting with a bunch of friends drinking coffee and

discussing our concerns... Truly a most appreciated support group!! It is so

amazing to have friends so spread out and joined in this list. I say it is

a huge answer to prayer!!! Thanks again!

[ ] Re: Transitions/Physical Outburst ????

Mom at wits end! (lengthy)

Hi ,

One of my twins has a very difficult time with transitions as well -

especially when tired/hungry/having to leave class early - missing

out on the closure of the end of the class routines.

- First recommendation would be to push hard to change the time (and

I know that's easier said than done but really the easiest

solution).

-Second recommendation would be to look into a picture schedule for

her that outlines her whole day for her so that she knows what to

expect. (I can give lots of details about picture schedules if you

need)

- Third recommendation would be maybe a special timer in the class

just for her that will give her the auditory clue that's it's time

to start the transition process.

Leaving class early would be hard for any kid - let alone someone

with SID - transition issues are classic SID. She might need the

end of the class routines to help her transition to the next step -

leaving. Maybe the teacher could help by offering a modified

version for her on the early days.

Good luck-

- L.

[Guest guest]

You're very welcome!

PLEASE keep us posted on 's repoing progress. We love hearing

about repo success.

-- In Plagiocephaly , " mummy2g " <garyclaireh@a...>

wrote:

> Hi everyone

>

> I just wanted to post a thanks for the replies that I received to

my

> post last night " could this be plagio "

>

> The advice and support was great, my husband was amazed so many

> people replied so quickly

>

> We have started a big research on plagio and have started repo, due

> to so much great info given to us from yourselves.

>

> Thanks from me, my husband and baby (6 weeks and 3 days)

[Guest guest]

I'm glad we were able to help. Keep us updated on 's progress.

Dustie

--- In Plagiocephaly , " mummy2g " <garyclaireh@a...>

wrote:

> Hi everyone

>

> I just wanted to post a thanks for the replies that I received to

my

> post last night " could this be plagio "

>

> The advice and support was great, my husband was amazed so many

> people replied so quickly

>

> We have started a big research on plagio and have started repo, due

> to so much great info given to us from yourselves.

>

> Thanks from me, my husband and baby (6 weeks and 3 days)

[Guest guest]

You got it Ann...once we are sick, it seems we have to work continually at detoxing and adopting a healthy lifestyle. I think we can feel great once again, and heal to a great degree, but I also believe that if we are not careful and go back to a totally unhealthy lifestyle, symptoms can return.

Patty

----- Original Message -----

From: nantynannie

Sent: Monday, February 09, 2004 7:28 PM

Subject: Thanks

Thanks to everyone who responded to my message. I am not quite sure how to work this message board and I think I missed a few when I first looked.For what it is worth, my immunologist says that there is a genetic predisposition to autoimmune diseases, but something has to "trigger" the disease process, usually physical trauma, stress, virus, etc. Maybe the implants and the body's response is a trigger. It would then make sense that even after the implants are removed, women remain sick (understanding that there is improvement in many cases)because the trigger has already been pulled. I think that after the trigger is pulled we are on the same path as any other person with an autoimmune disease and many factors contribute to the progression (or lack thereof) such as overall health and habits.Any thoughts? I am new to this whole thing.Ann

[Guest guest]

Hi, -

Cod liver oil is not the same thing as the ProEFA - which does not have Vitamin

A in it. You can check on the Nordic Naturals website to see the ingredients in

each of their products - it's a pretty decent website. Maybe there is someone

else who remembers but I think cod liver oil has vitamin A - and too much can be

dangerous as it is not a water soluble vitamin - it is stored in the body and

can build up to toxic levels (although there is a real question about how much a

person really needs to take before problems develop and a question of how else

the body can utilize/metabolize the vitamin) as opposed to vitamins like vitamin

C that is washed out of the body.

As for our ped. - when we told him that we were going to put Josh on fish oil

supps, he smiled and asked why. We explained all that we learned from

[Guest guest]

so true kathy! i can barely get through all of the mail much less sometimes think of something to say in reply. and i am overloaded with info. but i cherish all info i get and print what i think will be helpful, whether it is addressed to me or not, even if i don't always reply. thanks, lisamikat828 <mikat828@...> wrote:

I just wanted to thank everyone that replied to my post on feeling ignored when offering support or advice. It made me feel good to know that I have been helpful, whether it seemed like it or not. I also thought back to the time when I was really wanting help and I am sure I often did not acknowledge all the posts of those who replied even when I really did value their post quite a bit. And I realize that the reason I didn't always respond was that I was often brain fogged and in a panic and only focused on how I could get better. It was a struggle just to read all the posts,let alone reply. So thanks again to those who took the time to tell me that they did appreciate my effort! It made my day a little better!God bless, kathy

[Guest guest]

In a message dated 26/05/2004 11:22:21 Central Standard Time,

iamladybird@... writes:

> I know that as I doc I would probably

> be frustrated also as there really is not enough known, but as a

> patient it becomes so very tiresome and emotionally debilitating to

> think you are finally starting to get somewhere and bango you find

> yourself back at square one.....I am sorry if I am upsetting anyone,

> but after awhile it becomes so hard to stay positive even with all

> the tools we have.....I am just so sick of here take this pill, or

> try this and how about this for pain, I read it constantly in the

> group. Anywyas thanks again ladies and I am sorry for rambling on,

> it just gets unbearable at times......Kathi in OK

>

I agree, Kathi. And I really get tired of a very common reaction doctors

tend to have with unexplained or odd symptoms: the classic blow off, where they

act like it's no big deal and maybe all in your head. For crying out loud,

send me to someone who can help! Admit you don't know!

AAAARRGGGGGGHHHHHHH Cary

[Guest guest]

,a and Cary.....

a:Thanks for the link, and interesting to see SD is mentioned

with the splinter hemroage (SP).....I truly appreciate it....

Cary:Thanks for your concern.....before menopause I was having awful

clotting problems, once through the meno. I have had nothing that

was extremely visable...except strange bruising that was basically

dismissed.....

: You are always such a help and have given me much

ammo....thank you

I am sorry to say I am developing a real attitude, and have tried

talking myself out of this, but I feel that all of us suffering with

autoimmune problems are in a group of patients that they don't know

what to do with, the new meds coming out either work or don't...we

are a group of truly frustrating problems that treatments don't work

with and are not so severe that they can get rid of us quickly as we

are not going to die tommorow. I know that as I doc I would probably

be frustrated also as there really is not enough known, but as a

patient it becomes so very tiresome and emotionally debilitating to

think you are finally starting to get somewhere and bango you find

yourself back at square one.....I am sorry if I am upsetting anyone,

but after awhile it becomes so hard to stay positive even with all

the tools we have.....I am just so sick of here take this pill, or

try this and how about this for pain, I read it constantly in the

group. Anywyas thanks again ladies and I am sorry for rambling on,

it just gets unbearable at times......Kathi in OK

[Guest guest]

Kathi, you're very welcome. I wish I could do much, much more for you.

Please don't apologize for the way you're feeling. Scleroderma is a

baffling illness. Treatment is so much trial and error, and mostly

error - so much more so than for RA and lupus.

You are very positive most of the time. It's natural to feel

disappointment and frustration after a setback. Please hang on to the

hope that something will work in the near future.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RE:Thanks

> ,a and Cary.....

>

> a:Thanks for the link, and interesting to see SD is mentioned

> with the splinter hemroage (SP).....I truly appreciate it....

>

> Cary:Thanks for your concern.....before menopause I was having awful

> clotting problems, once through the meno. I have had nothing that

> was extremely visable...except strange bruising that was basically

> dismissed.....

>

> : You are always such a help and have given me much

> ammo....thank you

>

> I am sorry to say I am developing a real attitude, and have tried

> talking myself out of this, but I feel that all of us suffering with

> autoimmune problems are in a group of patients that they don't know

> what to do with, the new meds coming out either work or don't...we

> are a group of truly frustrating problems that treatments don't work

> with and are not so severe that they can get rid of us quickly as we

> are not going to die tommorow. I know that as I doc I would probably

> be frustrated also as there really is not enough known, but as a

> patient it becomes so very tiresome and emotionally debilitating to

> think you are finally starting to get somewhere and bango you find

> yourself back at square one.....I am sorry if I am upsetting anyone,

> but after awhile it becomes so hard to stay positive even with all

> the tools we have.....I am just so sick of here take this pill, or

> try this and how about this for pain, I read it constantly in the

> group. Anywyas thanks again ladies and I am sorry for rambling on,

> it just gets unbearable at times......Kathi in OK

[Guest guest]

Kathi,

I found several references of SP in SD, but they were patients describing

the symptoms of their disease.

I hope it isn¹t the enbrel since it is helping you so much in other ways.

I can understand your feelings and have felt the same way more than once. I

take all these meds and have all the risks of side effects only for the

disease to progress and claim new joints. I¹m very happy that the disease

is slowed down, but I know I am one of the lucky ones. I read everyone¹s

stories day after day and get so frustrated that more can¹t be done to help

find cures for autoimmune diseases. For you it is harder to deal with since

SD is rare and not researched enough. You do a very good job of staying

positive, so if you get down it is very understandable.

a

On 5/26/04 12:17 PM, " Kathi " <iamladybird@...> wrote:

> ,a and Cary.....

>

> a:Thanks for the link, and interesting to see SD is mentioned

> with the splinter hemroage (SP).....I truly appreciate it....

>

> Cary:Thanks for your concern.....before menopause I was having awful

> clotting problems, once through the meno. I have had nothing that

> was extremely visable...except strange bruising that was basically

> dismissed.....

>

> : You are always such a help and have given me much

> ammo....thank you

>

> I am sorry to say I am developing a real attitude, and have tried

> talking myself out of this, but I feel that all of us suffering with

> autoimmune problems are in a group of patients that they don't know

> what to do with, the new meds coming out either work or don't...we

> are a group of truly frustrating problems that treatments don't work

> with and are not so severe that they can get rid of us quickly as we

> are not going to die tommorow. I know that as I doc I would probably

> be frustrated also as there really is not enough known, but as a

> patient it becomes so very tiresome and emotionally debilitating to

> think you are finally starting to get somewhere and bango you find

> yourself back at square one.....I am sorry if I am upsetting anyone,

> but after awhile it becomes so hard to stay positive even with all

> the tools we have.....I am just so sick of here take this pill, or

> try this and how about this for pain, I read it constantly in the

> group. Anywyas thanks again ladies and I am sorry for rambling on,

> it just gets unbearable at times......Kathi in OK

>

>

>

>

[Guest guest]

((((((((((((((a)))))))))))))......as always thanks.....Kathi in

OK

>

> > ,a and Cary.....

> >

> > a:Thanks for the link, and interesting to see SD is mentioned

> > with the splinter hemroage (SP).....I truly appreciate it....

> >

> > Cary:Thanks for your concern.....before menopause I was having

awful

> > clotting problems, once through the meno. I have had nothing that

> > was extremely visable...except strange bruising that was

basically

> > dismissed.....

> >

> > : You are always such a help and have given me much

> > ammo....thank you

> >

> > I am sorry to say I am developing a real attitude, and have tried

> > talking myself out of this, but I feel that all of us suffering

with

> > autoimmune problems are in a group of patients that they don't

know

> > what to do with, the new meds coming out either work or

don't...we

> > are a group of truly frustrating problems that treatments don't

work

> > with and are not so severe that they can get rid of us quickly

as we

> > are not going to die tommorow. I know that as I doc I would

probably

> > be frustrated also as there really is not enough known, but as a

> > patient it becomes so very tiresome and emotionally debilitating

to

> > think you are finally starting to get somewhere and bango you

find

> > yourself back at square one.....I am sorry if I am upsetting

anyone,

> > but after awhile it becomes so hard to stay positive even with

all

> > the tools we have.....I am just so sick of here take this pill,

or

> > try this and how about this for pain, I read it constantly in the

> > group. Anywyas thanks again ladies and I am sorry for rambling

on,

> > it just gets unbearable at times......Kathi in OK

> >

> >

> >

> >

[Guest guest]

Hi ,

I'm glad you're being proactive and getting the ball rolling and

that Hannah's pictures were inspirational to you! I was in a very

similar situation to you before Hannah's third band as you know, and

I'm very glad we did what we did. If you do reband him, you'll be

glad to know that even with months off Hannah readjusted fine, so

hopefully Ian will too! Let us know how the appt goes.

, mom to Hannah

>

> Hi everyone, thanks for all the input. I know I can post about my

> situation and you all understand where I'm coming from whereas

> everyone around me doesn't. I called the PT today and plan to set

up

> an appt. next fri. It's the earliest I can get in. Unfortunately,

we

> have to resubmit all the info to the insurance again. I don't care

> though, I will pay out of pocket if I have to. I will take some

pics

> of Ians head today at bath time and post them. Please be honest

with

> all your opinions. , I looked at Hannahs head lastnight and

that

> is what motivated me to get the ball rolling. Now I'm just kicking

> myself for not doing the second band months ago. Oh well, I just

> wanted to see what would happen on our own, well that led to ear

> infection after ear infection on his flat side SIGH!!! Thanks

again

> everyone. Martz, Ian's mom

[Guest guest]

If you're taking about the one pointed out, I've now seen it, and am

excited to give it

a go.

Thanks for your help!!

'

> -

>

> > I was looking for something I could make in mason jars.

> >I've already got a cabbage rejuvelac recipe, but I'm also looking for good

> >kraut stuff.

>

> Welcome to the list! There's a PDF in the files section which illustrates

> how to make kimchi, a fermented cabbage food that can be superior to

> sauerkraut. I strongly recommend checking it out.

>

> Good luck!

>

>

>

>

> -

[Guest guest]

Thanks for all the articles...Thanks a for your response..it did help

me to understand SED rate....it was interesting to read that problems with

protein may artificially lower SED rate, despite inflammation. I am having

problems with protien metabolism as well.... My Albumin is low. I also appear

to have a Thiamin deficiency ( AKA B-1) Thiamin is needed to process protein. (

I have this despite supplementation of vitamin B-1) These problems may be a side

effect of the weightloss surgery I had 3 months ago as the RNY I had cause some

mal absorption. I feel more optomistic today, now that the holidays are over, I

might be able to get something done.

Faith

-------------- Original message --------------

Faith,

Hopefully has helped you understand the RF. I just had to add

that I DON'T have a lot of obvious swelling or redness, yet my sed

rate is continually high. Most of the time it's in the 60's and has

gone over 100 many times. Yet to look at my joints, they are only

mildly inflamed. Unfortunately the bone erosion is invisible so you

can't see the extent of my damage unless you look at my x-rays.

a

On Sun, 02 Jan 2005 07:06:33 +0000, fmt2002@...

<fmt2002@...> wrote:

>

>

> Does anyone know how a rheumatoid factor of 487 is classified?

> I believe this is a different type of result than the 1:80, 1:64 etc that is

usually used. ( I think it is a newer type of test for rheumatoid factor) I just

know that when they talk about the ratio titers, they associate different

diseases to different levels of the factor...I have not been able to find

anything about this type of measurement except that <60 is negative. Any input

you might have is appreciated

>

> Also why would a SED rate be normal when a person has obvious signs of

inflammation in multiple joints? ( redness, swelling, severe pain)

>

> Faith

>

>

[Guest guest]

Faith,

Malabsorption after weight loss surgery is a concern. Have you spoken

to the surgeon about it?

Good natural sources of thiamine include brewer's yeast, organ meats,

wheat germ, oatmeal, whole grains, pork, fish, poultry, nuts, dried

beans and peas, avocado, spinach and cauliflower.

Thiamine is found in the germ and bran of wheat and in the outer

covering of rice grains, so refining grains removes much of the

thiamine. The vitamin is easily destroyed by cooking heat and is lost

in the water used to cook food. Malnutrition can cause the Albumin

to be low because there is not enough protein in the diet for the

liver to make new albumin from. I take liquid Ultra- B vitamins and

wonder if that might be more digestible for you. That is something to

ask your doctor.

a

On Mon, 03 Jan 2005 18:07:01 +0000, fmt2002@...

<fmt2002@...> wrote:

>

>

> Thanks for all the articles...Thanks a for your response..it did help

me to understand SED rate....it was interesting to read that problems with

protein may artificially lower SED rate, despite inflammation. I am having

problems with protien metabolism as well.... My Albumin is low. I also appear

to have a Thiamin deficiency ( AKA B-1) Thiamin is needed to process protein. (

I have this despite supplementation of vitamin B-1) These problems may be a side

effect of the weightloss surgery I had 3 months ago as the RNY I had cause some

mal absorption. I feel more optomistic today, now that the holidays are over, I

might be able to get something done.

>

> Faith

[Guest guest]

Thanks a... a good suggestion. I have been eating alot of the foods you

mentioned. I am waiting on a call from the surgeons office as to how to proceed.

Thiamin deficiency is a scarey thing ..I think the doctor may start me on

injections for some time until that is stabilized again... the liquid vitamins

may be an option.

Faith

-------------- Original message --------------

Faith,

Malabsorption after weight loss surgery is a concern. Have you spoken

to the surgeon about it?

Good natural sources of thiamine include brewer's yeast, organ meats,

wheat germ, oatmeal, whole grains, pork, fish, poultry, nuts, dried

beans and peas, avocado, spinach and cauliflower.

Thiamine is found in the germ and bran of wheat and in the outer

covering of rice grains, so refining grains removes much of the

thiamine. The vitamin is easily destroyed by cooking heat and is lost

in the water used to cook food. Malnutrition can cause the Albumin

to be low because there is not enough protein in the diet for the

liver to make new albumin from. I take liquid Ultra- B vitamins and

wonder if that might be more digestible for you. That is something to

ask your doctor.

a

On Mon, 03 Jan 2005 18:07:01 +0000, fmt2002@...

<fmt2002@...> wrote:

>

>

> Thanks for all the articles...Thanks a for your response..it did help

me to understand SED rate....it was interesting to read that problems with

protein may artificially lower SED rate, despite inflammation. I am having

problems with protien metabolism as well.... My Albumin is low. I also appear

to have a Thiamin deficiency ( AKA B-1) Thiamin is needed to process protein. (

I have this despite supplementation of vitamin B-1) These problems may be a side

effect of the weightloss surgery I had 3 months ago as the RNY I had cause some

mal absorption. I feel more optomistic today, now that the holidays are over, I

might be able to get something done.

>

> Faith

[Guest guest]

, the Epsom salts and hydrogen peroxide baths have proven very

effective for some people at reducing pain levels. Add 2 cups of Epsom

salts to a tub of HOT water and soak. After 5 to 10 minutes add three 16

oz. bottles of 3% hydrogen peroxide from the drugstore, Sams, Walmart, etc.

Keep water HOT and soak for 45 minutes. Be sure to take any medications or

supplements after the bath rather than before.

An infrared sauna is also effective. My husband made me one I use as a

preventive - using 4 bulbs instead of 3 to adjust for a little larger space.

You can make one easily. Either of these methods is excellent for removing

the toxins that cause your pain. You might also consider taking enzymes

between meals NOT with meals. Wobenzyme is a good brand. Below is the info

detailing the infrared sauna plans.

Ethel

http://www.drlwilson.com/articles/sauna_therapy.htm#encplans

Electric Light Sauna Plans

The electric light sauna described here performs very well and is

inexpensive. One mounts the lamps on a piece of wood and places the unit in

a small closet or other enclosure. The ceiling needs to be 6 foot or less

and the area about 4 foot x 4 foot, small enough to contain the heat.

If the area is larger, one will need more lamps or a small

space heater to make sure the space heats up to about 115 degrees. One can

easily add a false ceiling of cardboard, plywood or even cloth to a closet

and partition the closet if needed. Click here to view a photo of an

electrical unit that can be mounted in a small closet or bathroom area.

Materials. The piece of wood can be veneer, plywood, masonite or solid wood

about 12 inches high and 24 inches wide. If it is necessary to absolutely

avoid all outgassing, use a 12 inch wide shelf board of pine, birch or some

other wood.

One will need three 250-watt, red infrared heat lamps. I

prefer General Electric, , Westinghouse or SLi lamps. Sylvania and

Feit recently changed the filament design on their lamps, and they focus

energy excessively for some people. Lamps are sold at hardware stores. The

lamps must be the red type. Do not use clear heat lamps as their spectrum

is not correct.

Also needed are three flush-mount bulb sockets. Large

plastic or porcelain sockets can only be wired from the back. Drilling the

holes will be more work. Smaller flush mount sockets are available that can

be wired from the front.

Also needed is fifteen feet of heavy lamp cord, a medium

duty male wall plug, 12 3/4-inch wood screws and 4 large washers, an

electrical box for the switch, a SPST switch and switch cover plate.

Optional is a switch-timer instead of a switch. Also needed is a 7-amp fuse

and fuse holder, and a piece of 1/2-inch mesh hardware cloth about 15 x 32

inches. This will form a protective screen so that nothing touches the hot

bulbs.

Construction. Mount the sockets to the board or enclosure

in a triangle shape. The top socket is centered while the two bottom sockets

are 8 inches below and 9.5-10 inches apart. When you mount the electrical

unit, the lower sockets are to be at abdomen height when sitting down, about

28 inches from the floor. The top socket is centered at chest height, about

36 " from the floor. Click here to view a diagram of the basic lamp layout.

The preferred location of the switch is in one of the upper corners above

the bulbs if one places the sockets on a board. If one builds an enclosure,

the switch can go on another wall, away from the bulbs. Wire the sockets in

parallel so one bad bulb wonít disable the unit.

For the protective screen, the hardware cloth will be bent into a C shape

with 1inch flanges at each end. Bend the 32-inch piece of mesh 90 degrees at

1 inch. Make another 90 degree bend at 9 inches, another at 23 inches and

another at 31inches. This should form a C shape with 1 inch flanges at each

end for fastening to the wood with four wood screws and large washers, two

on the bottom and two on top.

Mounting and Ventilation. Secure the unit it so it will not

fall over. Ventilating the sauna is helpful. If building an enclosure,

leave a 1-2 inch opening across the top at the front and back.

Enclosures. These can be of wood, glass or even cardboard. No special

materials are required because the temperature stays mild. Build the

enclosure about 4 feet by 4 feet by 6 feet high. The heat may dissipate if

the space is too large. A sauna cabinet where oneís head remains outside is

helpful for claustrophobics but less effective. Exposing the head to

far-infrared radiation is most desirable.

Siding made of cedar or fir is a popular sauna material. Tongue-and-groove

siding slides into a frame and few nails are required. Walls can be built as

modules, then screwed together. Cedar gives off terpenes that may affect

chemically sensitive individuals. Redwood may also outgas.

Plywood will work, since the enclosure stays relatively cool. It is less

recommended for the chemically sensitive due to the glue it contains. One

may use glass for one wall. Glass reflects far infrared energy and avoids a

claustrophobic feeling but single-pane glass is a poor insulator. Less

expensive enclosure options are cardboard boxes or blankets. Tape or staple

together two refrigerator boxes. To use blankets, build a frame of wood and

hang blankets over the frame.

Cautions. Observe all cautions as with any electrical

appliance exposed to heat and moisture. Do not touch bulbs during use, or

let water, sweat, towels or anything touch them. Accidents can happen in

saunas. Always move slowly and carefully. Never allow young children to play

in or use the sauna unaccompanied. I cannot be responsible for misuse of the

sauna or poor construction. For more information, see the 125-page Manual

of Sauna Therapy.

Sauna Frame Enclosure Plans

An excellent inexpensive enclosure suitable for

apartments and portable use consists of a frame over which one places

blankets, a cloth drop cloth or fabric. The following design requires no

special skills or tools. The frame parts cost less than $30.00. Click here

to view a photo of the enclosure frame.

Materials. The frame requires five 10-foot sticks of the thicker (SCH 40,

480 PSI) 3/4-inch white PVC pipe. Also required are four 3/4-inch PVC

T-connectors and eight 3/4-inch PVC elbows. One will need four 3/4-inch

pipe clamps and eight machine screws and nuts to fasten the clamps to the

lamp unit. PVC cement is not needed.

One may cover the frame with two queen or king-size

blankets, fabric such as fleece, flannel or velour, a large cloth painter's

drop cloth, quilts, comforters or canvas. I do not recommend an

aluminum-coated material. Also needed are clothes pins to hold the blankets

or fabric in place and a small stool or chair without a back to sit on. The

stool or chair may be any type. The bottom of the sauna does not get too

hot. Painted surface is okay, as is metal, plastic or wood. Raw wood is

cleanest, although new wood stools are often coated or treated with

chemicals. Tools required are a hack saw or pipe cutter to cut PVC pipe,

tape measure and a rubber hammer to tap pieces together if they are stiff.

No PVC glue is needed.

The enclosure is designed to be connected to a board

made of solid wood, plywood, masonite or other material about 24 inches wide

and 12 inches high. The board has the lamp sockets and switch mounted as

described in Appendix I. One forces the PVC frame to narrow where it

connects to the board. It will flare out and become wider as one moves away

from the board. The design shown is five feet high, high enough for most

people.

Enclosure Assembly. Cut the PVC pipe into four

5-foot sections, six 4-foot sections and four 3-inch sections. Assemble as

shown in the photo of the completed unit. Push pipe sections into the

connectors and use a rubber hammer to gently tap the pipe firmly into the

connectors. Assembling the unit on a hard floor will help, as one can place

the pipe on the floor when tapping them with a hammer. No cement should be

necessary unless pipe is very loose in the connectors. The order of

assembly of the sections does not matter.

Secure a board about 24 inches wide containing the

lamp sockets to the PVC frame with four 3/4-inch pipe clamps. The frame

will bend to accommodate the size of the board. This in fact adds rigidity

to the structure. The lamp height will be adjustable by moving the board up

or down along the vertical PVC pipe sections. The upper lamp should be at

chest height when sitting and the lower lamps at abdomen height.

When assembly is complete, cover with two or more

large blankets, fleece, quilts, comforters or heavy fabric overlapping at

the far end to create a convenient entrance. Add a bench to sit on, a

towel or two to cover the floor, screw in the three lamps and the sauna

should be ready for use.

Warnings: Be sure to have a guard in front of the

lamps and that fabric or blankets are 12 inches or more from the heat lamps

to avoid a fire hazard. Pull blankets or fabric tight near the lamps so it

does not hang loosely near the lamps. Avoid leaving the lamps on when no

one is present.

rheumatic thanks

Thanks to all of you who responded. I spoke with my Doc this am. He is

the head of Beth Isreal Deaconess Med Ctr Harvard Med school dept of

Rheumatology, Dr. Threntham. I have a 4 ½ hr drive to get to him

but it's worth it if I can have my life back. He doesn't want me on Mtx

even though he initially offered the concurrent therapy. He said he

feels it's working and wants me to stay the course. He told me to take

xrta strgth Tylenol for the pain.(??) I'll try it, maybe he's right,

maybe the narcotic isn't helping as much as the APAP anyway. Today I

feel pretty good besides the pain and am going to venture out on my own

and do a little grocery shopping. I would love to try to go back to

work. It's so hard to know what each day is going to be like. Yesterday

I was asleep more than awake and today I even did some ironing. It has

been sitting waiting for me to convince my elbows that it was worth the

pain and today I finally did.

Thanks for your support, it means the world to me right now.

Montemorano

[Guest guest]

Thank you for the input. I already take Plaquenil and Bextra along with the

mtx. When I talk to my primary doc, the facts will help. The gift of your

knowledge is a blessing!

[Guest guest]

I can't help you with a doctor but I grew up in South Point Ohio where everyone knows everybody else!!!!! What town do you live in? My parents are still there. Kathy

[low dose naltrexone] Thanks

, thanks for the three neuro names in the Ohio area. Unfortunately, none of them are near her. Anyone else? I'm looking for an LDN-friendly doctor in southern Ohio, the pointy southern tip, near KY and WV border. Thanks -- Maureen

[Guest guest]

, it's good to hear that being part of the group is helpful.

I'm not sure that very many people here with RA alone are routinely seeing a

neurologist; however, some people here have more than one diagnosis. For

example, we have a few members with MS as well as RA.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Thanks

>I just wanted to take a moment to thank everyone at this site.

> I have found a wealth of information about this disease here. It is so

> comforting to be able to go somewhere and ask a question, and get answers

> and advice from people who have been there. So what if we get off track

> once in a while.

> The people here have offered friendship, and empathy, I have not found

> everywhere else.

> I do have a question. In reading the posts I have noticed that many of

> you have a neurologist that you see regularly. Why is that? I have see

> lung and kidney specialist. along with my internist and rheumy but a

> neurologist has never been suggested. Just wondering that all. Thanks

> in WI

>