New Member Intro

Report post · September 17, 2006

Hi susan:

I take the gnc multivitamin for women without iron but you might find other

that you like better. and B-50 is a combination of B vitamins which are good for

your nerves. It has helped me tremendously with seizure control and memory. It

gives me a lot of enery and I feel great! Also check out the list of foods that

Arnold suggests that contain B-12. I still don't know how to find the archives

everyone talks about. So if you find them let me know.

Try all this and see how much better you feel and if it is not good enough,

keep search.

Ask and you shall receive, search and you shall find!

Good luck.

susan larsen <esusanlarsen@...> wrote:

What is B50?

multivitamin?

--- <lindae321@...> wrote:

> Hi:

> look into neurofeedback, magnesium, B- 50

> agood multivitamin

> proviotics

> Diet: No dairy, low salt and sugar, no eggs, no

> chicken, no red meat,

> rest, no staying up late. and you are getting

> to menopause time and that always makes your

> seizures worst. Estrogen makes them worst

> progesterone helps.

> good luck!

>

> Kopera <ginakopera1@...> wrote:

> What about trying raw milk?

>

> narrowguager <dbgrubb@...> wrote:

> This is my introduction to the group. I'm 46,

> female, and I had my

> first seizure after hitting the back of my head just

> before bedtime

> when I was 25 and then sleeping right afterward.

> Duh!!!

> I have seizures every now and then and like everyone

> - I am

> interested in not having them anymore. I am also

> very against

> medical doctors' intervention since I have had some

> very eye opening

> discussions with them and know that they are not!

> concerned with my

> health or well-being.

> I've gone for 10 years between seizures without

> medication before so

> I know it is possible. I've recently done some

> cleansing to rid

> myself of parasites and heavy metals and such and

> now I'm having more

> trouble with seizures. I figure it is a deficiency

> somewhere because

> it happens right after I have my period.

> I just took some sublingual B-complex and have

> ordered some Udo's oil

> (perfect balance of omegas) so I would like to know

> of anything else

> I should concentrate on or stay away from. My diet

> is mostly organic

> fruits and vegetables with a little dairy and meat

> tossed in that is

> without hormones and additives. I am slowly adding

> in whole grains

> as I can find them.

> Lately I have been taking scullcap to control the

> seizures and I also

> keep lobelia tincture close by since it shuts down a

> seizure

> immediately. Unfortunately, most of my seizure

> activity is while I'm

> sleeping. My last two grand mals made me bite my

> tongue. Boy is

> that not fun!

> Take care everyone.

> Love, moni

>

> Have a Happy and Healthy Day,

> Kopera

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr.

> We'll help. Small Business.

>

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Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

Report post · October 25, 2006

>

Hi

Please read my post to . This would apply to u also.

I don't know about capsules. I buy the 450g jar of extra virgin

coconut oil. The Refined, bleached and deodorised stuff is cheaper

and is nutritional the same in the context of lauric acid. It is ok

to cook with but not so nice to eat neat apparently. I believe it

has less antioxidants and I think lacking in enzymes. Haven't yet

tried it myself. You can get the oil by drinking coconut milk too,

but if you don't like the taste that is probably not helpful. If

you made it into a smoothie you probably would not notice it. 250ml

gives you 40g of oil. So it works out cheap as well. It does help

with weight loss as well. I find it suppresses your appetite as

well as raising your metabolism. Hope this helps

Sally

> Hi! I'm fairly new to NT principles and have just begun adding

coconut oil to my diet. Just

> today found this group and am looking forward to being a part of

it - learning and

> contributing!

>

> I did a brief scan of some recent postings; please forgive me if

I'm asking questions that

> have previously gone around...

>

> I've been Armour thyroid for a couple of years - one of those

classic 'borderline'

> hypothyroid cases, but luckily I had an M.D. who understood and

tried me on A.T. It's

> helped somewhat, but I want to focus more on my nutrition to

support my thyroid (which

> has ironically gotten worse in the past 2 years,) hence one of the

main reasons for adding

> CO to my diet. I " m not looking for a miracle diet pill, but have

gained a lot of weight this

> past year, along with significant fatigue, constantly cold

(sometimes to the point of

> painful), depressed mood, etc. In just a week of CO capsules.

(I am nauseated by the

> taste and even smell of coconut) I feel noticeably better. Less

cold, less exhausted - this

> is huge for me right now!!

> Did I read correctly in previous postings that refined CO will be

as nutritionally beneficial

> as VCO?

> I've read that expeller-pressed CO has minimal taste/smell - can

anyone share their

> experiences with expeller-pressed CO? The capsules are just too

expensive!!

>

> Thanks!

>

Report post · October 26, 2006

Hi Lori,

How sad your daughter is going through this. I don't have any knowledge of JRA

vs RA. My

son has juvenile psoriatic arthritis, and though all of these diseases are

similar, they are

quite different and I wouldn't want to speak on a subject I don't have

first-hand knowledge

about. However, I did want to let you know that I'm sure someone from this board

most

likely can help and that this sounds like a better place to find some help for

your daughter

and yourself. I don't know very many families who deal with JPsA and I also

turned to an

adult site. Though it might be the same disease, the social circumstances are

very, very

different. I sure hope you find what you are looking for here.

Also, I know what you mean about weighing the side effects of the medications

with the

benefits. My son also takes methotrexate, and until just a few weeks ago, he

would spend

the entire night and next day throwing up. As parents we saw little change in

the disease,

so we wanted to take him off. The doctor kept saying that we're not seeing an

improvement, but that the mtx is keeping him from getting worse, and she doesn't

want

to see what the disease would do if he came off the mtx. Finally, after 9

months, there was

no active arthritis and we kept him on full strength but cut in half his

naproxen dose.

Within 2 weeks he flared. Then got back on track. Then flared again and added

plaquenil

in August. Now, very little active arthritis again.

We're not happy about all of the drugs, and if we could, we'd stop everything

all together.

But I have seen Andy have pain-free days. Though they were few and far between,

this

does give me hope. Our end goal is to be in drug-free remission, but the doctor

has

already prepared us to be hopeful for medicated remission based on his specific

disease. I

know there are lots of other moms and dads who can tell you wonderful stories

how their

kids are in remission, and even some without drugs. Keep your spirits up and

don't give

up. Whatever you decide to do about the medication, know that you are doing what

you

feel is best.

>

> Hi. My name is Lori Maynard and my daughter (the oldest of our

> five children) was diagnosed with RA in February of this year. She was

> 12 at the time but turned 13 in August. We travel out of state to see

> our pediatric rheumatologist, Dr. Lehman, whom we trust and have become

> comfortable with.

>

> I have some (OK, a ton of) questions and I'm not entirely sure where to

> start. I think my first question has to do with the difference with RA

> and JRA. Early in the year, my understanding was that patients with

> JRA tended not to have a positive RF. 's RF numbers were very,

> very high as was her sed rate back in February and throughout the

> spring. These numbers seem to be much more in the normal range now

> because of her drug regimine (Humira, Methotrexate, Folic Acid, Lodine,

> Prednisone)but her symptoms don't necessarily reflect this as she is

> always in pain and frequently in a lot of pain. Dr. Lehman has led me

> to believe that she has what would be consistant with adult onset RA as

> opposed to JRA. Does this make sense to any of you? How would he be

> able to tell that this isn't JRA? Could it still be JRA?

>

> has been taking Humira injections once a week for about 7 months

> and Methotrexate injections (25 mg) once a week for about 6 months.

> Her hair had been thinning from methotrexate, but this weekend it began

> falling out in clumps and now she has a huge bald spot on the top of

> her head. She takes 1 mg of folic acid. Tomorrow is her methotrexate

> dose day and I have told my doctor that I want to cut her dose in half

> because of her hair falling out. He reiterated to me how serious her

> arthritis is and that he would be reluctant to do this, but that I

> needed to weigh the risk vs. benefit of the drug. In other words, " go

> ahead and cut the dose, but I don't think it's the best thing. "

>

> Have any of you ever been in this position and what did you do?

>

> Another question I have is about expectations. Should I be expecting

> these drugs to put her into remission? Has anyone else done very

> poorly for a year or two and then gotten better or gone into

> remission? I know there is no cure for this, and I watched my dad

> suffer terribly with RA, but I am still so hopeful for some kind of

> remission. I guess this is why I'm still hopeful that has JRA

> instead of adult onset RA. At lease with JRA, I have heard that there

> are many people who have gone into remission and can somewhat put this

> nightmare behind them.

>

> I appreciate being able to post these questions. I am on another RA

> loop, but most of the people there are older and have the disease,

> where I am making medical decisions for a child who has the disease and

> that is quite different.

>

> Thank you for any help you can offer.

>

> Lori in NJ

>

Report post · October 26, 2006

Lori,

I think the answer to your question about RA vs JRA is that positive

rheumatoid factor. It is my understanding that when a child has a positive

factor then there's a good chance that the arthritis is very early onset RA

or will more likely mirror RA. I may be wrong, and I'm sure someone else

will be able to better explain this to you.

As for the hair, boy do we understand! My daughter was on methotrexate for

many years with no hair loss. When we had to add a new med, though, she

started losing her hair. By November of 7th grade we could no longer hide

the bald spots and she continued to lose her hair. This was very difficult

for ~~ yes, that's my daughter's name, too, and she is the 5th of our 6

children~~ but her comment was that if she had to choose between having hair

and being able to walk, dress herself, etc, then there really was no choice.

She did eventually choose to start wearing a wig and has been pretty pleased

with that choice. Her hair is finally growing in again, though not as well

as we'd like, and she's still wearing a wig but also goes without it

sometimes. The thing to remember with the hair is that it won't physically

harm the kids, although you do have to figure out how to deal with the

emotional end of it. The arthritis, as you know, is a different story.

Please don't hesitate to ask if you have more questions about the hair loss.

I definitely don't have all the answers; I just know all too well what

you're dealing with.

Liz

_____

From: [mailto: ] On Behalf

Of Lori

Sent: Wednesday, October 25, 2006 9:03 PM

Subject: New member intro

Hi. My name is Lori Maynard and my daughter (the oldest of our

five children) was diagnosed with RA in February of this year. She was

12 at the time but turned 13 in August. We travel out of state to see

our pediatric rheumatologist, Dr. Lehman, whom we trust and have become

comfortable with.

I have some (OK, a ton of) questions and I'm not entirely sure where to

start. I think my first question has to do with the difference with RA

and JRA. Early in the year, my understanding was that patients with

JRA tended not to have a positive RF. 's RF numbers were very,

very high as was her sed rate back in February and throughout the

spring. These numbers seem to be much more in the normal range now

because of her drug regimine (Humira, Methotrexate, Folic Acid, Lodine,

Prednisone)but her symptoms don't necessarily reflect this as she is

always in pain and frequently in a lot of pain. Dr. Lehman has led me

to believe that she has what would be consistant with adult onset RA as

opposed to JRA. Does this make sense to any of you? How would he be

able to tell that this isn't JRA? Could it still be JRA?

has been taking Humira injections once a week for about 7 months

and Methotrexate injections (25 mg) once a week for about 6 months.

Her hair had been thinning from methotrexate, but this weekend it began

falling out in clumps and now she has a huge bald spot on the top of

her head. She takes 1 mg of folic acid. Tomorrow is her methotrexate

dose day and I have told my doctor that I want to cut her dose in half

because of her hair falling out. He reiterated to me how serious her

arthritis is and that he would be reluctant to do this, but that I

needed to weigh the risk vs. benefit of the drug. In other words, " go

ahead and cut the dose, but I don't think it's the best thing. "

Have any of you ever been in this position and what did you do?

Another question I have is about expectations. Should I be expecting

these drugs to put her into remission? Has anyone else done very

poorly for a year or two and then gotten better or gone into

remission? I know there is no cure for this, and I watched my dad

suffer terribly with RA, but I am still so hopeful for some kind of

remission. I guess this is why I'm still hopeful that has JRA

instead of adult onset RA. At lease with JRA, I have heard that there

are many people who have gone into remission and can somewhat put this

nightmare behind them.

I appreciate being able to post these questions. I am on another RA

loop, but most of the people there are older and have the disease,

where I am making medical decisions for a child who has the disease and

that is quite different.

Thank you for any help you can offer.

Lori in NJ

Report post · October 26, 2006

>

> Lori,

>

> I think the answer to your question about RA vs JRA is that

positive

> rheumatoid factor. It is my understanding that when a child has a

positive

> factor then there's a good chance that the arthritis is very early

onset RA

> or will more likely mirror RA. I may be wrong, and I'm sure

someone else

> will be able to better explain this to you.

>

> As for the hair, boy do we understand! My daughter was on

methotrexate for

> many years with no hair loss. When we had to add a new med,

though, she

> started losing her hair. By November of 7th grade we could no

longer hide

> the bald spots and she continued to lose her hair. This was very

difficult

> for ~~ yes, that's my daughter's name, too, and she is the

5th of our 6

> children~~ but her comment was that if she had to choose between

having hair

> and being able to walk, dress herself, etc, then there really was

no choice.

> She did eventually choose to start wearing a wig and has been

pretty pleased

> with that choice. Her hair is finally growing in again, though not

as well

> as we'd like, and she's still wearing a wig but also goes without

it

> sometimes. The thing to remember with the hair is that it won't

physically

> harm the kids, although you do have to figure out how to deal with

the

> emotional end of it. The arthritis, as you know, is a different

story.

>

> Please don't hesitate to ask if you have more questions about the

hair loss.

> I definitely don't have all the answers; I just know all too well

what

> you're dealing with.

>

> Liz

>

> _____

>

> From: [mailto: ]

On Behalf

> Of Lori

> Sent: Wednesday, October 25, 2006 9:03 PM

>

> Subject: New member intro

>

> Hi. My name is Lori Maynard and my daughter (the oldest of

our

> five children) was diagnosed with RA in February of this year. She

was

> 12 at the time but turned 13 in August. We travel out of state to

see

> our pediatric rheumatologist, Dr. Lehman, whom we trust and have

become

> comfortable with.

>

> I have some (OK, a ton of) questions and I'm not entirely sure

where to

> start. I think my first question has to do with the difference

with RA

> and JRA. Early in the year, my understanding was that patients

with

> JRA tended not to have a positive RF. 's RF numbers were

very,

> very high as was her sed rate back in February and throughout the

> spring. These numbers seem to be much more in the normal range now

> because of her drug regimine (Humira, Methotrexate, Folic Acid,

Lodine,

> Prednisone)but her symptoms don't necessarily reflect this as she

is

> always in pain and frequently in a lot of pain. Dr. Lehman has led

me

> to believe that she has what would be consistant with adult onset

RA as

> opposed to JRA. Does this make sense to any of you? How would he

be

> able to tell that this isn't JRA? Could it still be JRA?

>

> has been taking Humira injections once a week for about 7

months

> and Methotrexate injections (25 mg) once a week for about 6

months.

> Her hair had been thinning from methotrexate, but this weekend it

began

> falling out in clumps and now she has a huge bald spot on the top

of

> her head. She takes 1 mg of folic acid. Tomorrow is her

methotrexate

> dose day and I have told my doctor that I want to cut her dose in

half

> because of her hair falling out. He reiterated to me how serious

her

> arthritis is and that he would be reluctant to do this, but that I

> needed to weigh the risk vs. benefit of the drug. In other

words, " go

> ahead and cut the dose, but I don't think it's the best thing. "

>

> Have any of you ever been in this position and what did you do?

>

> Another question I have is about expectations. Should I be

expecting

> these drugs to put her into remission? Has anyone else done very

> poorly for a year or two and then gotten better or gone into

> remission? I know there is no cure for this, and I watched my dad

> suffer terribly with RA, but I am still so hopeful for some kind

of

> remission. I guess this is why I'm still hopeful that has

JRA

> instead of adult onset RA. At lease with JRA, I have heard that

there

> are many people who have gone into remission and can somewhat put

this

> nightmare behind them.

>

> I appreciate being able to post these questions. I am on another

RA

> loop, but most of the people there are older and have the disease,

> where I am making medical decisions for a child who has the

disease and

> that is quite different.

>

> Thank you for any help you can offer.

>

> Lori in NJ

>

Report post · October 30, 2006

Annie (and group):

First, I want to thank the founders of this listserv for filling a

much needed roll - uniting parents of young people with disabilities

in Illinois. This holds strong potential for some much needed change,

and I look forward to being a part of it.

I'd like to respond to your question, Annie, about guardianship. I

have a daughter (whose name is also Annie) who is 23 years old, loves

Broadway musicals, Shakespeare, Award Shows, singing, going out to eat

and to a good horror movie, and making speeches. She also has Down

syndrome and is a person who might be typical of those who " need "

guardians. We have, despite some significant challenges to us as

decision-making partners with our daughter, investigated and refused

to proceed with guardianship for 2 reasons. Most importantly, legal

guardianship is almost impossible to revoke. The person with

disabilities must prove to a court that they are able to make their

own decisions by undergoing a series of tests. Tough for many of our

family members in the best of circumstances. The second reason is that

we believe in our souls, despite professional opinion, despite lack of

adaquate or appropriate adult services, transportation, etc.,that our

daughter can, given the right supports, live a full, happy,

independent, productive, and love-fulled life. We don't want to undo

her chance at that.

I hate long emails, but I'll be back. I look forward to getting to

know all of you.

Vicki Niswander

>

> Hi. My name is Annie, Park Ridge, IL. Son Al is 21 and a senior at

> Dominican University. He has Asperger's. Loves History, English,

> avid reader, and spends times at the movies and video games. Has

> three sisters 19, 16, 12. which is his only social interaction since

> he has no other friends, just school acquaintances. He has no work

> experience, was never successful getting a job, so we are very

> worried about his work opportunities after school is done. Looking

> for guidance on this transition and help with answers about

> guardianship and other long term decisions regarding his future.

>

Report post · October 30, 2006

I have a more significantly challenged son, especially in regard to communication and believe me, if I could possibly NOT have proceeded with guardianship, I would have. It was so hard to take those rights away from him, because I know he is capable in many ways that are not apparent to others.

Vicki, your daughter is SO lucky to have you as her parent and advocate. ing independence may come at a cost but it is usually worth the price.

Often doing what is easy is not what is best.

Thank you for sharing your story.

Ellen

Ellen Garber Bronfeldegskb@...

Re: New Member Intro

Annie (and group):First, I want to thank the founders of this listserv for filling amuch needed roll - uniting parents of young people with disabilitiesin Illinois. This holds strong potential for some much needed change,and I look forward to being a part of it.I'd like to respond to your question, Annie, about guardianship. Ihave a daughter (whose name is also Annie) who is 23 years old, lovesBroadway musicals, Shakespeare, Award Shows, singing, going out to eatand to a good horror movie, and making speeches. She also has Downsyndrome and is a person who might be typical of those who "need"guardians. We have, despite some significant challenges to us asdecision-making partners with our daughter, investigated and refusedto proceed with guardianship for 2 reasons. Most importantly, legalguardianship is almost impossible to revoke. The person withdisabilities must prove to a court that they are able to make theirown decisions by undergoing a series of tests. Tough for many of ourfamily members in the best of circumstances. The second reason is thatwe believe in our souls, despite professional opinion, despite lack ofadaquate or appropriate adult services, transportation, etc.,that ourdaughter can, given the right supports, live a full, happy,independent, productive, and love-fulled life. We don't want to undoher chance at that.I hate long emails, but I'll be back. I look forward to getting toknow all of you.Vicki Niswander>> Hi. My name is Annie, Park Ridge, IL. Son Al is 21 and a senior at > Dominican University. He has Asperger's. Loves History, English, > avid reader, and spends times at the movies and video games. Has > three sisters 19, 16, 12. which is his only social interaction since > he has no other friends, just school acquaintances. He has no work > experience, was never successful getting a job, so we are very > worried about his work opportunities after school is done. Looking > for guidance on this transition and help with answers about > guardianship and other long term decisions regarding his future.>

Report post · October 30, 2006

Ellen-

I hope you did not take my input as criticism of those who made a

different decision than we. Each of our family members are unique

individuals. My hope is only to offer something to think about when

considering options. Thanks for your feedback.

Vicki

> >

> > Hi. My name is Annie, Park Ridge, IL. Son Al is 21 and a senior at

> > Dominican University. He has Asperger's. Loves History, English,

> > avid reader, and spends times at the movies and video games. Has

> > three sisters 19, 16, 12. which is his only social interaction

since

> > he has no other friends, just school acquaintances. He has no work

> > experience, was never successful getting a job, so we are very

> > worried about his work opportunities after school is done. Looking

> > for guidance on this transition and help with answers about

> > guardianship and other long term decisions regarding his future.

> >

>

Report post · October 30, 2006

Hi Vicki:

On the contrary, I found your comments respectful and in no way felt that you were being judgemental.

Ellen

Ellen Garber Bronfeldegskb@...

Re: New Member Intro

Ellen-I hope you did not take my input as criticism of those who made adifferent decision than we. Each of our family members are uniqueindividuals. My hope is only to offer something to think about whenconsidering options. Thanks for your feedback.Vicki> >> > Hi. My name is Annie, Park Ridge, IL. Son Al is 21 and a senior at > > Dominican University. He has Asperger's. Loves History, English, > > avid reader, and spends times at the movies and video games. Has > > three sisters 19, 16, 12. which is his only social interactionsince > > he has no other friends, just school acquaintances. He has no work > > experience, was never successful getting a job, so we are very > > worried about his work opportunities after school is done. Looking > > for guidance on this transition and help with answers about > > guardianship and other long term decisions regarding his future.> >>

Report post · December 4, 2006

Hi,

Good for you on your progress. In my opinion if you have had Candida since

you were a child, then it likely has gone systemic. That means you must be very

patient in your efforts. It also means that you have to drastically change your

diet. No grains (they are stored in such a way as to invite mold), no sugar,

plenty of good quality vegetables, etc.

I have been working on ridding myself from yeast and fungus for most of this

year and have been following Doug Kaufmann's Phase I diet (link is

www.knowthecause.com). He has written quite a few books covering all aspects of

fungus and yeast overgrowth.

One of the things about taking Psyllium is that you must make sure to drink

plenty of pure water. The general consensus is to drink half your weight of

water (don't count soda, juice, etc. as part of this total). That should help.

Also I understand that Cascara Sagrada should only be taken short term.

This forum has been so helpful to me and they directed me to a great website

that has also been extremely beneficial to me, and that is

http://www.askmoreless.com/home. I have made leaps and strides since following

the PH balancing principles espoused there.

Good luck on your healing journey.

Warmly, Gloria

<amandasunshowers@...> wrote:

Hi! I'm and I've been trying to kill the candida in my body for

3 months. I believe I've had it since I was a child and am now 37. I

went super lo-carb for a few weeks and am still eating lo-carb with

more veggies. I took olive leaf for the first couple weeks then Yeast

Cleanse by Solaray for a week then switched to oil of oregano for a

week. I had alot of die-off symptoms during this time and was

expelling ALOT of yeast. I did a liver cleanse and will do another.

When I stopped having die-off symtoms I increased my oregano and still

had no die-off so I switched back to the Yeast Cleanse(caprilic acid,

tea tree oil, grapefriut seed extract and pau d'arco) still very little

die-off. What does this mean and do I need to add something else to

the protocol. I was very constipated before the YC and oregano and

these helped to expell tremendously. I'm back to not eliminating even

with the YC. BTW, I take many vitamins including 3000mg of Vit.C and

800-1200mg of magnesium plus cascara sagrada to try and help. I also

take psyllium almost every day, could this be constipating for some?

I'm at a loss, any ideas? I don't believe I've gotten rid of the yeast

because I still have a cyst deep inside the top of my leg, I really

want to get this under control without taking perscription drugs!

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

Everyone is raving about the all-new beta.

Report post · December 4, 2006

Hi . This is a long term problem that will take time to resolve.

In the beginning, you get die off due to the large number of yeast

organisms dying and letting out toxins. When the die off goes, that

doesn't mean that you have stopped killing the yeast, just that it is

dying in numbers your body can handle. That is perfectly normal.

I also have problems with constipation - are you sure that you don't

have IBS that is triggered by something you are eating?

Keen