Thank you

November 3, 2009

Ash and you are so special and you are family. I am blessed for having met you

both.

Thank you

> I just wanted to than everyone on the group for you support of

> and I over the last few years. There has been so much

> support for us here. We have had the honor of meeting several

> here in person and they have a very special place in my heart.

> Many on this group have become a part of our family. I could go

> on and on about the ones that we have met. If you ever have a

> chance to meet anyone here I doubt you would regret it. The only

> one I will single out is a little girl who has made a huge

> inpression on me that is an inspration to anyone who knows her.

> Maggie.Like I say from time to time when I grow up I want to be

> hockey tough like Maggie.

>

> But to all of you I want you to know you rock.

>

November 29, 2009

Hi ,

I have never heard of HBOT caused hearing loss, but that doesn't mean

that your child didn't have some trouble with it, esp., with all her

aural issues. Since she was at higher pressures...would she have been

able to tell you of ear pain while traveling?

With Rad. Nec. HBOT rebuilds the capillary beds, and enables the

non-healing wounds to heal. So, its hard to connect those dots with your

daughter's problems.

Personally, I hate " rounding " on dives... which I prefer children to be

treating in monoplace chambers. They get exactly the treatment they need

and it is adjusted to their personal needs during the treatmetn series.

How could the compressor be that noisy? Where did you go? How old is

the chamber and equipment?

That's another benefit of monoplace chambers, they are relatively quiet

except for the sound of the O2 swooshing in (still a bit noisy though).

But, packed multiplaces are much less expensive!

Blessings,

Ed

On 11/29/2009 6:00 PM, Mommy wrote:

>

> My daughter is now 2 months post completing 30 dives at 2.5 atm for

> radiation necrosis of her face and brain. She had been unable to walk

> unassisted due to balance problems for 2 years, could no longer

> produce adequate tears in her left eye leaving her cornea scarred. She

> is deaf in the left ear and paralyzed on that side of her face also,

> and constantly has mouth sores (possibly due to damage to the salivary

> glands). She also had bone damage from steroids used to control post

> radiation swelling of her brain that persisted for well over a year

> post-radiation. A few weeks into HBOT she began to stand in place and

> shift her weight without holding onto anything. About 2 weeks ago she

> started walking without her walker for brief periods (still pretty

> shakey, but WOW!). Her eye is producing tears almost normally again,

> her pierced earring holes have finally healed after a year of seeping,

> and the perpetual drainage from her ear tubes has finally stopped. Her

> salivary glands are back on-line (almost to the point of annoyance -

> she has to learn to swallow better now). She is speaking more clearly.

> It is the best holiday gift we could have received. I appreciate this

> group for all of the information we were able to gather to prepare for

> this treatment.

> One question I do have, as we are considering doing another 30 dives

> next Spring: her doctor noticed some new hearing loss in her " good "

> ear (which already had moderate hearing loss) after treatment. Is this

> " normal " post-treatment? Is it related to the depth of the dive?

> Technically it was supposed to be 2.4 atm, but her dive-master

> " rounded up. " Should we dive shallower next time? If so, about what

> depth? Should she wear ear plugs to protect her from the noise in the

> machine? Skip watching the videos while in there? (It was an older

> machine - are the older ones noisier?). Or is it all just a

> coincidence? Her doctors are pretty uninformed about HBOT, so nobody

> can tell us anything or advise us. We'd like her to have more

> treatment, but she can't afford to lose any more of her hearing. Any

> thoughts here are appreciated.

> Happy holidays to all.

>

--

J. Nemeth, President, CEO

1955 36th Street

Sacramento, CA 95816

916-856-7044 x339

916-856-7040 Fax

www.SpectrumEvents.com

February 6, 2010

Hi Leeda,

Ensure you follow " Curing Candida, How to Get Started "

http://www.healingnaturallybybee.com/articles/intro1.php

All the best, Bee

>

> i just wanted to thank everyone and bee for this board and all the replys...i

have been on the website everyday reading and making changes...i am currently

and have been off all reg and fake sugars for a while...now i am in the process

of getting the (safe)grains, fruit and dairy all out...I see the website says to

do step one and two at the same time...so should i just go for it and remove it

all...my protein and fats and veggies are good, just need to get the other junk

out....i calculated my ratios...so i guess i just need to do it.....

February 25, 2010

Yes, Marc, thanks a lot for making these ES-contacts possible...

Like Jennie, I hadn't really met a lot of ES-ers before. Only two other

Belgians, one of them was very sensitive (and he got a lot better by slowly

detoxing).

Regards off-topic, I think everybody agrees ES is very complex but strongly

linked with toxic metals/diet/allergies/...

Which is why I also think that kind of information is very interesting for us

ES-ers...

.

>

> Marc,

>

> I wanted to add my personal thanks to you for all you do to keep this EMS

group going. I had read about EMS and knew I had it but to date I have not met

anyone who suffers from EMS. A couple of people will say once in awhile they

have some EMS symptoms but they do not persist. So, this group is the first

contact I have had with fellow EMS sufferers. And being able to read info, ask

questions and even realizing I have made progress with my EMS is a lifesaver for

me - in the aspect that I know I'm not crazy!!

>

> I'm sorry that sometimes I pull the posts off topic. But I feel like the

other topics of MCS, gluten, organic, antibiotics (just had a go around with the

doctor on this), etc. are all a piece of my individual (un)health puzzle that

contributes to my EMS.

>

> Thanks again,

>

> Jennie

>

April 4, 2010

>

> Hi,

> Thanks so much for replying to my post. It feels like the people in this group

are the only ones who can relate as of course the medical community doesn't have

any answers. I plan to keep on with the diet and this is what is giving me a

focus right now and I do believe that it will help in many ways because it is

truly how we should be eating. I am also trying to trust that my body knows what

it is doing and is capable of healing. This gives me hope. I have read Dr.

Price's book and it makes so much sense.

+++Hi Carol. You are welcome. Hope is so important!

> I am seeing a mental health worker but they are part of the medical health

care system (I live in Alberta, Canada) and so it is free but their approach

leans towards prescribing meds (although I keep saying up front that I don't

want meds). I am trying to see a psychologist where it is talk based instead.I

am also going to try taking 5HTP (I think it is called I have written down

somewhere)I understand it is supposed to be a natural way of helping with

depression.

+++You do not need 5HTP when you are on this program. There is a lot of

serotonin produced in the intestines, and it won't take long to for their

strength to build up, since the cells in that area regenerate every 5 days.

Here's an article on the side-effects of 5 HTP too:

http://www.nutritional-supplements-health-guide.com/5-htp-side-effects.html

+++Here's my article on anxiety and depression which applies to any emotional

issues: http://www.healingnaturallybybee.com/articles/treat6.php

>

> I do have another question...I was reading about IUDs' causing candida and was

wondering about copper IUDs' as that is what I have...or is it only the hormonal

ones that cause candida?

+++All IUD's are an intrusion to the body, like a sliver or a transplanted

organ, so your body will be continually trying to get rid of it, causing healing

symptoms, i.e. inflammation and irritation.

The best, Bee

April 5, 2010

Hi, - for this early on, q200 al a day is way too low. Depending on your

start weight, you should be more in the 1800-2200 cal a day range. as you lose,

you'll need to cut down calories - and you're already below the bare minimum

needed to get the nutrition needed to do well.

We are never trying to eat as little a possible. That leads to no wt loss - or

unhealthy weeight loss that will come right back.

The goal of the band is to eat well, and just a bit less than maintenacne, so we

lose slowly and safely this time -that is the only way weight will stay off.

Crash diets never work - we have all done that, and here we all are, needing

banding.

also, you're in the healing stage, and need very good calories to heal well,

form good scar tissue, and " seat " the band.

The BARE minimum is 1200-1500 cal a day - and then only after a good fill and

some very good weight loss already.

As far as gaining weight - when we eat far too few calories for our needs, the

body lowers it's metabolism and REQUIRES less calories, so it's easy to not

loose or even gain. Setting the metabolism so low almost guarantees weight

regain - the body just cannot sustain itself on so few calories and becomes

inefficient and slow in burning calories.

You can't possibly be getting the protein, fiber, calcium, and good carbs with

this low calories. And eating WELL is essential.

Further, the band is not working until we get to a good fill level. A very few

people (usually very heavy men) get some restriction just from band placement,

but most of use need several monthly fills for the band to begin to work. The

first few months are not for losing, but for starting to learn band needs,

getting going with good execise, starting to work with a good therapist to learn

the unmet needs we have that we are trying to meet with uneeded FOOD, and much

more - getting into place the many things that contribute to a safe and healthy

loss that will LAST.

If you'd share your start weight (or email me directly) I can suggest a more

definite calorie need for you. There are charts available to help determine

this. The goal is 500-1000 cal less a day than your maintenance needs - this

includes the BMR which is the calories required simply to exist - heart rate,

digestion, brain activity, breathing, etc. Then, we add the calories needed for

your lifestyle - housework, running after 2 kids, working, shopping, etc., and

the amount of exercise you're getting.

A very basic calculator is here: http://www.caloriesperhour.com/index_burn.php

(note it is BMR not BMI)

Sandy r

>

> Thank you everyone for your advice about Protein, it has helped a lot. I love

reading the posts and learning new things about my band everyday. I do not live

near my support group, so it is nice to have the support daily

online. I am 5 weeks post op and I love my band. I have recently had a few

pounds of weight gain and can not understand why. I am staying below 1200

calories a day. I think I need to up my water intake and exercise. I am having

some water retention in my ankles late in the evening. I am at a standstill for

several weeks with my weight and then a 5 lb weight gain (which I think is water

retention). Has anyone else had this happen to them?

>

> Wishing everyone a great Monday and a great week ahead.

>

> Thanks again, Hooper

>

April 5, 2010

Sandy,

I reviewed the link you sent.I was wondering if you could assist me some? I

think I understand but want to make sure..

I am female age 42.I am 5'2 and weigh 171 this morning.

It says my BMI is 31.3(still obese) ugh

My BMR is 1491

My RMR is 1389

I am disabled and do not work.I feel I have a fairly sedentary life.I do some

form of exercise 3-4 days per week.I will either ride my bicycle(not stationary)

for 20-40 minutes OR I will walk on my treadmill for 20-40 minutes(usually 30

minutes at 2.2mph)I go about 1 mile in that time according to my old machine..

Should I be eating less than 1389 calories per day to lose weight?I am

currently eating between 1450 and 1800 calories per day.It fulcuates daily

between those numbers.I have been maintaing for the most part.Up a pound down a

pound but not losing since August 09 when I started a new leukemia drug that put

about 35 pounds on me in less than 3 months.I gained 20 pounds the first month

on the med.ugh..I have been struggling not to gain more ever since. I want to

lose the regain and get back to my pre med weight of 140-145.

Any idea as to about how many calories would help me lose some regain?

Thanks

SHaronS

>

> A very basic calculator is here: http://www.caloriesperhour.com/index_burn.php

> (note it is BMR not BMI)

>

> Sandy r

April 8, 2010

Hi, Sharon - the bottom line, to me, is always : Are you losing with what you

are doing? If not, you need to cut back calories a bit and/or increase exercise.

To loase1# a week, we need to cut back 500 cal a day or 3500 cal a week. 3500

calories = 1 pound.

However, you're quite low already., and have other nutritional needs as well

regarding your illness.

Has your doc said he wants you to lose more weight? You may be at a good weight

for YOU right now.

If your BMR is 1491, and really want to lose, you need to cut this back by to

maybe 1200 - I'd never suggest going lower than that, for anyone. It's just

about impossible to meet nutritional needs with fewer calories than 1200.

Be excruciatingly honest in tracking, too - maybe commit to every bite into

Fitday.com for a true total. It's easy for any of us to be taking in more

calories than we think with little nibbles and bites..

Sandy r

> >

> > A very basic calculator is here:

http://www.caloriesperhour.com/index_burn.php

> > (note it is BMR not BMI)

> >

> > Sandy r

>

April 8, 2010

Sandy,

Thanks for the help..My primary DR hasn't said anything about me losing

weight.I haven't seen my weight lose surgeon in a year or so.I saw the PA at his

office in Feb for a small fill.She commented on the gain but didn't say to lose

more.She knew I wanted to lose the regain that was why I was getting a fill.I

went from 139 -176 with the start of the new leukemia med.The gaining has slowed

down for the most part but I can't seem to lose a pound and keep it off.I go

down 4 up 5 down 3 up 4 etc.It seems the more active I am the more my weight

goes up..lol..I have been doing spring cleaning for two weeks

now.Working(constant movement) for 6-8 hours each day plus the regular exercise

I do weekly.The scale went up 3 pounds this week.

I do count calories everyday.I track everything down to a piece of sugar free

gum I chew every once in awhile.I am diabetic so I don't eat sugar(gave that up

last year)I don't eat white carbs.I will have carbs in vegetables,Kashi cereal

and occas.oatmeal.I eat on a salad plate and use a 1 c. bowl.I weigh and measure

everything.I drink about 100oz of plain water daily.

Not sure what else I can do.I do want to lose the regain as I feel better and

look better at the lower weight.I am only 5'2.None of my clothes fit and I am

wearing sweat pants like I did when I was 315 pounds.I refuse to buy " fat "

clothes again.I feel like I would be accepting the gain and as we know 10 pounds

can lead to 50 to 100.I gain so easily I can't give in and not fight it.

Just wasn't sure how many calories to be eating with a BMR of 1491.I guess I

can try to lower the calories more and see if that helps.Increasing the exercise

hasn't helped weight loss but it might be helping me avoid even more weight

gain..Oh the struggle...lol

Thanks again

SharonS

>

> Hi, Sharon - the bottom line, to me, is always : Are you losing with what you

are doing? If not, you need to cut back calories a bit and/or increase exercise.

To loase1# a week, we need to cut back 500 cal a day or 3500 cal a week. 3500

calories = 1 pound.

> However, you're quite low already., and have other nutritional needs as well

regarding your illness.

> Has your doc said he wants you to lose more weight? You may be at a good

weight for YOU right now.

>

> If your BMR is 1491, and really want to lose, you need to cut this back by to

maybe 1200 - I'd never suggest going lower than that, for anyone. It's just

about impossible to meet nutritional needs with fewer calories than 1200.

> Be excruciatingly honest in tracking, too - maybe commit to every bite into

Fitday.com for a true total. It's easy for any of us to be taking in more

calories than we think with little nibbles and bites..

>

> Sandy r

April 14, 2010

I agree --you go girl! We will keep good thoughts going your way. Before you know it this will be over and you are on your way to the first day of your new fantastic life. You are going to be the person you always dreamed you could to be!

Hugs,

Suzanne

In a message dated 4/14/2010 8:53:39 P.M. Pacific Daylight Time, daisyfaye88@... writes:

Everyone for your kind words and warm welcomes to the board. I will be around asking questions and leaning on you all for support as I go through this emotional time. But enough about me lets give a shout out to ! Surgery tomorrow how exciting. We are here for you girl. Its going to be the first day of your new life!!

July 5, 2010

Hi Gayle, Yes, best to keep a positive attitude. We are all here for you! I

know it will go well.

All the best, Joan

________________________________

From: Gayle <keithandgayle@...>

TKR group <Joint Replacement >

Sent: Mon, July 5, 2010 5:54:22 PM

Subject: thank you

Hi...

I want to thank all who responded to my concerns about giving your blood or not.

As it seems many did not and never needed it. That has made me feel much

better. Also..should it arise that I would need blood I will have to trust that

the screening now is much better then in years past. Trust is hard to

give...must be earned...and when going into something like a TKR and giving

trust to a doctor you have only sat and spoken to less then a handful of times

is sometimes hard. I've read reviews about my number one candidate and was

comfortable in how he explained what he would do and why. He also invited me to

chat with a patient who was waiting to see him. That was also very helpful.

After three weeks she was doing very well and driving...and in little pain. Of

course..she was much thinner than I.

I must also admit that reading all the 'after issues' of pain and complications

has scared me into weighing whether to or not to have surgery. So I thank those

who wrote about the positive experience they had.

I know I will have a slower recovery and maybe harder because of being

obese...but others have gotten through it...and I know I will as well.

Have a great day.

Gayle

December 2, 2010

Candi,

Jaye always has the roughest time September - November so we are hoping

for this to slack off and her to get to feeling good all the time again. I do

not think that Jaye has ever really been in remission but she gets to

where she is feeling pretty good for periods of time. Jaye was on the

methotrexate for three months before we really started seeing progress and then

by five to six months even better. Jaye did have tummy troubles from the

meds and so she is on Prevacid and folic acid to help minimize her gerd.

Naproxin, Celebrex, Mobic, Indomethecine and I think there is one other one that

we tried. I have them written somewhere but not sure. At this point she is on

Mobic or Meloxicam the generic along with her other meds also she is on

Plaquinil or Hydroxichloriquine the generic. Say thanks Mom for scaring you out

of using the electric blanket. I know many people will go in and turn it on 30

minutes or so before their child wakes up so not to have it on all night. It is

just enough to help them warm their body before getting out of bed. Jaye

used to also turn it on when she went to bed and then i would go in and turn it

off once she was sleeping. That way I was not worried about the possibility of

a fire. In an older house with old wiring it could be cause for concern. You

have to be comfortable with using it and not be worried, and so that is why I

never let it be on overnight. Do not every worry about asking quesitons, that is

what this is for. It won't be long and you will be sharing your experiences as

well.

Veri & Jaye 16 poly

Thank y

It has been a few days since my last post. It is getting very cold here in

Georgia and has been having a very hard time. I just wanted to say thank

you to everyone that replied to my original post, and an even bigger thank you

for the words of encouragement, and advice!

I have a question. What are some of the time frames y'all experienced between

being diagnosed to your child's first 'remission'? Now that is off the

steroids, it seems her pain has come back full force. I was really hoping that

the steroids would get the pain under control, and the Naproxen would reduce the

swelling, so the Metho could do its job, but it seems we are right back to where

we were when this whole thing started. We will be giving her 11th weekly shot of

Metho tomorrow, and I am wondering just when I will see a difference in her pain

or if I need to call the doc to see if upping the dosage is what we need to be

doing or am I fighting a losing battle because of the cold weather and we just

have to manage.

Also, do any of your kids get a belly ache from the Naproxen? has been

experiencing that for the last week - is there anything else she can take

instead of the Naproxen or something she can take to ease her belly?

For those of you who live where it is cold this time of year, do you do anything

different for your kids to help them with their joints? I just bought a heating

blanket, but my mother has now made me paranoid that it is going to set my house

on fire so I don't know if I'm going to use it - but I thought it was a great

idea.

I hate to bother y'all with my questions, but it seems I get a quicker response

here than from the doc.

Thanks

Candi

December 2, 2010

Candi

My daughter has been on methotrexate for over a year and her pain was not under

control. She took naproxen but it upset her tummy too so her rhuemy prescribed

nexuim. She has never been in remission yet, but things are still changing for

us. In the beginning we had a diagnosis of poly JIA, now its juvenile psoriatic

arthritis, because she had pain and a weird rash(dermatologists kept saying it

was allergic reaction) that persisted for years, but disappeared for the first

time after starting Humira. My long winded point is, that sometimes it can be a

matter of finding the right medication for your child. Humira has been great for

my daughter. She also was just prescribed a new NSAID this week. The generic is

called meloxicam. It is not as stong as naproxen, but its easier on the tummy.

needed it because she is having some inflammation in her tendons, which

we are told goes along with this particular kind of arthritis. (Still learning

as I go.) Anyway, good luck to you. I hope your child soon gets relief from the

pain!

, (17 JPsA, TMJ)

Sent on the Sprint® Now Network from my BlackBerry®

Thank you

It has been a few days since my last post. It is getting very cold here in

Georgia and has been having a very hard time. I just wanted to say thank

you to everyone that replied to my original post, and an even bigger thank you

for the words of encouragement, and advice!

I have a question. What are some of the time frames y'all experienced between

being diagnosed to your child's first 'remission'? Now that is off the

steroids, it seems her pain has come back full force. I was really hoping that

the steroids would get the pain under control, and the Naproxen would reduce the

swelling, so the Metho could do its job, but it seems we are right back to where

we were when this whole thing started. We will be giving her 11th weekly shot

of Metho tomorrow, and I am wondering just when I will see a difference in her

pain or if I need to call the doc to see if upping the dosage is what we need to

be doing or am I fighting a losing battle because of the cold weather and we

just have to manage.

Also, do any of your kids get a belly ache from the Naproxen? has been

experiencing that for the last week - is there anything else she can take

instead of the Naproxen or something she can take to ease her belly?

For those of you who live where it is cold this time of year, do you do anything

different for your kids to help them with their joints? I just bought a heating

blanket, but my mother has now made me paranoid that it is going to set my house

on fire so I don't know if I'm going to use it - but I thought it was a great

idea.

I hate to bother y'all with my questions, but it seems I get a quicker response

here than from the doc.

Thanks

Candi

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

December 2, 2010

Hi Candi,

Remission actually means something totally different than the flare abating but

I do understand what you mean. All I can say is it varies widely. We're still

waiting for remission and it has been about 10 years since we met this disease.

From the sounds of things your current regime is not working. MTX is slow acting

and for many it can be months before you see something---and sometimes you only

notice it because you aren't taking it any more and go 'huh, it was doing

something. " Call your doctor and let them know--and about the tummy issues.

There are medicines out there to help with the stomach pains. And yes, it is

very common to have to take one med and another to combat that med. ;-(

As for the heating blanket---times have changed and these are much safer than

the older ones. At this time of year you can find heated mattress pads too which

can be really helpful, since the heat is below you. My daughter loved hers--so I

bought me one and I love it too. Ours has dual controls so hubby and I don't

have to sleep at the same temperature. And now her little brother has one too.

;-)

Please call your doctor and let them know how things are. Your child doesn't

have to live in pain, etc and to grin and bear it. Since my daughter was

diagnosed there have been many new medications discovered and they are showing

promising results.

And never worry about coming here with questions---the beginning is the hardest

when you have so many questions and are so confused by it all. And one day you

will be able to help another family so please ask away.

e, mom to 'joe' 23 poly+

From: bejeweledbycandi <bejeweledbycandi@...>

Subject: Thank you

Date: Thursday, December 2, 2010, 1:47 PM

It has been a few days since my last post. It is getting very cold here

in Georgia and has been having a very hard time. I just wanted to say

thank you to everyone that replied to my original post, and an even bigger thank

you for the words of encouragement, and advice!