Hello group

[Guest guest]

In a message dated 07/30/2001 6:50:10 PM Eastern Daylight Time,

fionaflame@... writes:

<< I've started on

prednisone, 7.5mg/day, and as soon as the liver tests come back he

wants to start me on methotrexate. >>

Hi Amy - that's the usual course of treatment by a rheumatologist. There are

some nasty side effects of these drugs, but for me, they are what gave me my

life back (although my lifestyle is modified now).

There are many alternative treatments which you can learn about here.

I hope you soon are feeling better - keep reading and posting here - it helps

a lot.

[Guest guest]

Welcome, !

I am very sorry to learn of all of your health problems. Dry eyes are a

big problem for many of us here.

There are several treatment options. Have you consulted with an

ophthalmologist?

Here are some links that may help:

http://www.goodeyedoc.com/dryeye.htm

http://webmd.lycos.com/content/article/1728.56589

http://www.eyevet.info/kcs.html

http://www.emedicine.com/oph/topic597.htm

http://www.dryeyehelp.com/Page7.html

[ ] hello group

> Hi, My name is . I am glad i found this group. I was diagnosed

with lupus in 1997. The diagnosis was changed to seronegative rheumatoid

arthritis in 2000. I also have fibromyalgia and irritable bowel from the

gulf war. I was stationed in Saudi Arabia during the war. I have other

chronic illnesses like diabetes 2 and hypertension. I walk every day

even though i am in pain constantly. My joints are stiff all day long. I

went back on Enbrel. I take prednisone, plaquenil,arava for the r.a. I

have a question for the group. I have really dry eyes and the artificial

tears doesnt do much. What are any suggestions i could try? Thanks. Have

a good day.

[Guest guest]

HI Sherry - I think a lot of us share many of your ailments. Welcome to the

group. I hope you'll find it helpful and supportive - I know I do.

Hope you're feeling good this weekend,

[Guest guest]

Hi Sherry....

I just want to tell you that I had PA before I was

ever diagnosed. I am now retired on SS Disability and

Workman's Comp. Since I was out with the work injury,

I applied for and received SSD, no problem. I also

have other things wrong too, but yours far out number

mine!

When the pain in my hands got so bad from the PA, I

asked my family doctor about applying for SSD. He

agreed. This was after he sent me to a specialist for

the PA. I found out in doing this that number 1...you

cannot be working in the 6 mos. before you file. I

know that YOU aren't. Many people keep working a few

hours a week because they can't make it with NO job.

SS will feel that if you can work, even a few hours a

week, then you can work and don't need SSD. I have a

friend who has had a stroke, and does minimal work.

He has tried 3 times and can't get it. Now he and his

wife have got a lawyer working on it. Also,

number2...I found out it is all the way the doctor

words it. Many times they fill out the paperwork, and

it isn't worded correctly. Also, you make sure that

you fill out YOUR paperwork right. Describe

everything in detail. Add extra papers if you have

to. I was specific telling why I could no longer do

that job. It was hell as my hands are crippling up,

and trying to pass medications at work was a

nightmare, not to mention walking on those cement

floors! It took me 3 weeks to hear from the office of

SSD that I had gotten it, and on my first try. I

didn't have to see ANY of their doctors at all. BUT,

I also had involved, my othopedic surgeron, my

cariologist and my rheumy. Their documentation had to

be great. If you want to write me privately, you can

at POLKANOW@... Gentle hugs and best wishes!

--- Sherry in SC <sherry98@...> wrote:

> I would like to introduce myself, as I am new to

> this group. My name is

> Sherry and I live in Columbia, South Carolina with

> my husband of 37 years. I

> have two boys that are grown and out on their own. I

> used to work and loved

> it then pain took over my life.

>

> I have gone from one doctor to another; I have seen

> more doctors than I can

> remember. I am taking 12 different pills a day,

> (feel like a Pharmacist)

> but my doctor says they are all necessary so I take

> them. I just went off

> Kadian (morphine); I had some side effects that was

> to uncomfortable to

> continue taking it. (Lost my voice) so now I am back

> to taking Celebrex,

> Ultram and Dorvonex again. My psoriatic arthritis,

> FMS, CFS, OA, RA, High

> Blood Pressure, Diabetes, and Hypothyroidisn are

> only part of my ailments.

> Also two blocked artries in my heart, a heart murmur

> and Irregular Heartbeat

> and Myofascial Pain. Oh yeah.. I cannot forget the

> depression, anxiety and

> fatigue.

>

> I joined this group to get support and hopefully

> some ideas of how I can

> deal with all this. I am not able to work and cannot

> get disability. I have

> tried to get SS about 4 times and keep getting

> refused. It is so hard not to

> work when you need the money so bad. My husband is

> doing the best he can but

> he hurts too. I just feel if I could contribute

> something, I would feel

> better physically. I am depressed and I cry a lot. I

> am on two different

> anti-depressants. I really feel I would not be able

> to exist without them. I

> have more days with pain then I don't but when I do

> feel like doing

> something and the flare is not so bad, I get up and

> do what I can but then I

> have to lay down for an hour or so. My legs and

> lower back hurt me whenever

> I do anything; even walking around in a store is

> uncomfortable.

>

> I have written a very long letter to my state

> Senator in hopes that he can

> see they did not handle the doctors reports

> correctly. It took me a very

> long time to write it. I just hope he can do

> something for me. I just do not

> believe I will ever get it.

>

> My computer is mostly my world, I like to talk to

> people and have met some

> really good friends. Having friends on the internet

> is easier than having

> them in real life. Most do not understand all my

> ailments. There is so much

> I cannot do, so I just backed off, they are not sick

> like I am. There is so

> much I cannot do, they have stopped asking. But my

> friends on the internet

> have always been here for me.

>

> I hope I have not bored to many of you but I just

> wanted everyone to know my

> situation, in hopes of finding some helpful hints.

>

> Sherry

>

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp.

>

>

>

__________________________________________________

[Guest guest]

Sherry,

I don't know what to say. Sounds as if you have an awful lot on your plate. I

have received some very good advice on meds, etc here, and hope you will also.

Teri

Sherry in SC <sherry98@...> wrote: I would like to introduce myself,

as I am new to this group. My name is

Sherry and I live in Columbia, South Carolina with my husband of 37 years. I

have two boys that are grown and out on their own. I used to work and loved

it then pain took over my life.

I have gone from one doctor to another; I have seen more doctors than I can

remember. I am taking 12 different pills a day, (feel like a Pharmacist)

but my doctor says they are all necessary so I take them. I just went off

Kadian (morphine); I had some side effects that was to uncomfortable to

continue taking it. (Lost my voice) so now I am back to taking Celebrex,

Ultram and Dorvonex again. My psoriatic arthritis, FMS, CFS, OA, RA, High

Blood Pressure, Diabetes, and Hypothyroidisn are only part of my ailments.

Also two blocked artries in my heart, a heart murmur and Irregular Heartbeat

and Myofascial Pain. Oh yeah.. I cannot forget the depression, anxiety and

fatigue.

I joined this group to get support and hopefully some ideas of how I can

deal with all this. I am not able to work and cannot get disability. I have

tried to get SS about 4 times and keep getting refused. It is so hard not to

work when you need the money so bad. My husband is doing the best he can but

he hurts too. I just feel if I could contribute something, I would feel

better physically. I am depressed and I cry a lot. I am on two different

anti-depressants. I really feel I would not be able to exist without them. I

have more days with pain then I don't but when I do feel like doing

something and the flare is not so bad, I get up and do what I can but then I

have to lay down for an hour or so. My legs and lower back hurt me whenever

I do anything; even walking around in a store is uncomfortable.

I have written a very long letter to my state Senator in hopes that he can

see they did not handle the doctors reports correctly. It took me a very

long time to write it. I just hope he can do something for me. I just do not

believe I will ever get it.

My computer is mostly my world, I like to talk to people and have met some

really good friends. Having friends on the internet is easier than having

them in real life. Most do not understand all my ailments. There is so much

I cannot do, so I just backed off, they are not sick like I am. There is so

much I cannot do, they have stopped asking. But my friends on the internet

have always been here for me.

I hope I have not bored to many of you but I just wanted everyone to know my

situation, in hopes of finding some helpful hints.

Sherry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi Sherry,

Another " Welcome! " to you!

You have a lot going on and everyone gave great advice on pursuing

your SSDI claim. A lawyer and good doctors are essential. Don't give

up!! Have you already gone through an ALJ (administrative law judge)?

That's what happens after you appeal your case. Always appeal,

appeal, appeal! Don't worry about being denied the first two times.

It's the third time that's important and when an actual judge will

hear your case. That will give you the best chance to present your

case.

I hope you'll get the support you're looking for here!

-Meghan

[Guest guest]

Sherry: I certainly felt your pain and desperation. Know that we are all

here for you and sharing your story and talking about your pain can help.

For me, it helps to find some joy in life. I still am able to work, albeit

with considerable pain and difficulty. My family (husband and 2 children -

one adult, one young) are my joy. Keeping busy is the trick for me. I don't

allow myself much down time to think about how cruddy I feel - that helps

with the depression. I find that if I have too much time to think about how

badly I feel, how tired I am and how hard it is to function, I get depressed.

So, I just keep very busy, and when I need a major escape I read one of

those " supermarket trash " novels - my favorite are the detective mystery

books. Keep the good thoughts, and write anytime. Toadessa7

[Guest guest]

Hi Ann! Geoff here.

You wrote:

> board. My name is Ann T and I was with the RBF and visited this site

(snip) I am a medical technologist (snip)

> complications of viral issues as well as elevated fibrinogen and

> perimenopausal symptoms have forced me to add complimentary features

> to my intial treatment regimine. With the aid of a DO and Chiro I

> feel that finally I am making headway with collodial silver

(snip)

> improved by using the Collodial silver topically as well and my own

> common sense approach of flax/fish oil also topically. I have avoided

> steroids at all cost and have recently discovered a natural approach

Doubtless you're aware due to your background of some of the extra care

needed when you are using colloidal silver. You may wish to consult your

alternative care practitioner (the Chiropractor?) about using Olive Leaf

extract instead for its anti-VIRAL properties or Oil of Oregano (N. American

Herb & Spice) and if you're specifically targeting Mycoplasma or fungi, you

may want to look at Raintree's items. It could be that you can get the same

or better results with less risk, although using the CS topically one would

think the risks minimal.

Another thing you may want to consider is ingesting the flax/fish oils.

Doubtless you are taking these for the EFA's and generally you will have

better results from ingesting them than from applying them topically.

Additionally, perhaps you are taking the fish oil specifically for

inflammation and/or Vitamin A which also usually work better ingested. If

inflammation is a key here, another alternative is Bromelain, a pure form of

which is available from NF Formulas. Some do report good results from

Bromelain (Harald for example) if taken properly, i.e., well away from food

in fairly sizeable doses... I think Harald takes 500 mg at a time, but I

don't know how many Kg he weighs. The jury's conclusion on Bromelain is:

" your mileage may vary. "

HTH

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing damage; 100% volunteer staffed.

[Guest guest]

rheumatic Hello Group

You wrote:

With the aid of a DO and Chiro I feel that finally I am making headway with collodial silver (Mesosilver) and natural progesterone cream by Dr Lee called (Natural Woman) added to my daily Minocin. My Lichen Sclerosis has greatly improved by using the Collodial silver topically as well and my own common sense approach of flax/fish oil also topically.

Our family uses colloidal silver for many things including colds, flu, sinus and bronchial problems. It's very effective. I make it myself very cheaply. Scleroderma patients with lung involvement might consider using CS in a nebulizer a couple of times a day.

Are you taking the flax seed oil internally as well? It's a great essential fatty acid - so necessary to the body and helpful in these diseases. I take it daily according to Dr. Johanna Budwig's formula - 2 TB in 1/4 cup low fat organic cottage cheese. bg adds nuts and fruit.

Ethel

[Guest guest]

Hi Ann,

Glad you made it. There is a wealth of knowledge here. I know there

are plenty who may be able to answer you with more good suggestions.

Just hang in there

Love

Marge.

> Dear Friends,

>

> I finally figured out what I was doing wrong and made it here to

this

> board. My name is Ann T and I was with the RBF and visited this

site

> many times for info and to read stories as well as see the links. I

> admire many here who have been on this AP road long before me and

> hope to be able to contribute some advice to others as well. A

little

> bit about myself: I have SLE/SD Crest with a new complication of

> Lichen Sclerosis. I am a medical technologist but have been

sidelined

> with these illnesses since the birth of my second son in 1992. I

have

> been ill for about 20yrs and tried many treatments but none have

> worked as well as AP which I began almost 3yrs ago after having 5

> bouts of pneumonia in one year. For me right now the added

> complications of viral issues as well as elevated fibrinogen and

> perimenopausal symptoms have forced me to add complimentary

features

> to my intial treatment regimine. With the aid of a DO and Chiro I

> feel that finally I am making headway with collodial silver

> (Mesosilver) and natural progesterone cream by Dr Lee called

(Natural

> Woman) added to my daily Minocin. My Lichen Sclerosis has greatly

> improved by using the Collodial silver topically as well and my own

> common sense approach of flax/fish oil also topically. I have

avoided

> steroids at all cost and have recently discovered a natural

approach

> to hair dye as well (Giovanni Henna Products). I have eliminated

> using any aluminum products and have subtituted natural enzyme

choice

> deod from Kiss my face. All sanitary products are 100% cotton

> unbleached from the health food store. I also use the peroxide

epsom

> salt baths regularly 3x per week. If anyone out there needs any

> advice on these issues I'd love to help you find a safe approach to

> women's issues. I know for me this info was difficult to locate and

> with so many HRT offered by GYN that I refused out of the strangest

> place today my Chiro I found the best advice and will always be

> greatful for his insite and compassion. By the way Marge

recommended

> him as he was also the person who helped her so long ago. Any

> questions just email me @ jeterruls@n... . Thanks for the

> great welcome and I am so glad to be a part of this outstanding and

> compassionate group. Love, Ann T

[Guest guest]

Hi Rob,

Welcome to the group, sorry about your dx of RA. There are a few

guys here, were all here for the same reason though. Is your meds

helping the RA? I am on Humira injections,I take darvocet and

Tramadol for pain. Also, on a anti-depressant Prozac 40mg. daily.

I know what you mean about limiting your life, it is hard to deal

with at times. I am on SSA right now, I am not able to work. I know

how tough it must be for you to be unemployed, in pain, and trying to

take care of your family. take care Tawny

--- In , " Rob Radke " <robchilla1@y...>

wrote:

> My name is Rob and I have had RA for about 3 years......I am

> currently taking arava,vioxx and methotrexate.......I am 34 years

> old...and a father of 2 with 1 on the way...Are there any other

guys

> with RA out there?.....I havent met many....RA has limited my life

> quite a bit as I am sure has been the case for many of

you.....before

> Ra I was a restaurant manager and was active and somewnat

> athletic...boy has all that changed.....i am currently unemployed

due

> to a performance based lay-off(actually they could have fired me,it

> was a recieving job and it wore me out)......and i am contemplating

> disabilitity or some kind of re-training program.....does any one

> know anything about that stuff?.......unemployment is not enough

> money and my prior work skills are pretty much worthless.....

[Guest guest]

There are differing grading systems, which complicates matters, but to the best of my knowledge, Grade refers to the amount of inflammation and is generally ranked 1 to 4. Grade 4 indicates involving all the liver. Stage refers to the amount of scarring (or fibrosis) with stage 4 indicating cirrhosis. Hope that helps a little. -dz-Sherry <sherrymichelle1@...> wrote:

I rarely post, so plz be patient with me. I have a tendency to drag things out. lol. Just a little bit about me. I have genotype 1B, my first liver biospy report states I have grade 2 and stages 2 and 3. Now here is why I am posting. A nurse told me the biospy report on the phone and I didnt know what to ask or what she was even saying lol. Yes, I have tried to read the info on the internet but I still dont understand what the biospy has revealed , lol. I need someone who will explain in laymen terms .. what the heck it means. I appreciat any comments or info on this. Sherry

[Guest guest]

Hi Carla

Welcome! I live in Manhat

[Guest guest]

Hello again Carla I live in Manhatten. My son Aedan has Bleph. He is 21/2

and had ptosis surgery to lift his lids at 10 weeks. Though it was terrible

to go through We are happy with the results of his surgery. I remember how

wonderful it was that we could look at eachother while nursing. Our surgeon did

a wonderful job. Her name is Mayer. 212 979 4575. We had no

problems with infections. While Blepherophimosis is quite rare there is info

(although often conflicting). There are so many wonderful people with

information

and advice on this group. And new info coming daily. Like the taping instead

of surgery. I know that there is a recommended surgeon at PHiladelphia

childrens Hospital that is skilled and knowledgable about Bleph. I with you a

peaceful New Year.

[Guest guest]

Carla

Hello again. Aedan is doing very well. We see a pediatric

opthamalogist, Dr. Campolattaro 212 684 3980 a few times a year. He is

the person

who diag

[Guest guest]

sorry diagnosed Aedan at 10 days old. He is supposed to be the best NYC

has to offer. The question I would have for your doctor is why at 1 year if

your childs pupils are fully exposed. Most advice I hear is if the vision is

not impeded it is best to wait until the child is older. Aedan may have some

vision issues but I don't have that strait yet. I'm in the middle of

discussion with Dr. C. But this may or may not have to do with his earlier

ptosis.

Well I'm off Aedan wants me to read to him.

[Guest guest]

Thank you for your email. Do you have BPES or do you have a child who has it? rainamint@... wrote:

Hi Carla Welcome! I live in Manhat

[Guest guest]

thank you so much for your email. I will call this doctor. This is the feed back I really need right now. Is your son doing better? Is he able to see ok? I have talked to the doctor about the taping but my daughters pupils are fully exposed so surgery at 1 year is the route her doctor would like to take. I am very scared of surgery and the scaring. I am sure she will be fine.Enjoy your holiday .

Best Wishes

Carlarainamint@... wrote:

Hello again Carla I live in Manhatten. My son Aedan has Bleph. He is 21/2 and had ptosis surgery to lift his lids at 10 weeks. Though it was terrible to go through We are happy with the results of his surgery. I remember how wonderful it was that we could look at eachother while nursing. Our surgeon did a wonderful job. Her name is Mayer. 212 979 4575. We had no problems with infections. While Blepherophimosis is quite rare there is info (although often conflicting). There are so many wonderful people with information and advice on this group. And new info coming daily. Like the taping instead of surgery. I know that there is a recommended surgeon at PHiladelphia childrens Hospital that is skilled and knowledgable about Bleph. I with you a

peaceful New Year.

[Guest guest]

, The only reason why is that he does not want her posture to start being effected by having to look up to see. Really the whole point of me joining this group was to get feed back like this so we can decide if surgery is nessasary. I am really questioning the rush of it. nna's left eye does droop more than the right. He told me she will tend to favor this side more which I really dont think she is doing... I am so confused as to what to do. I really am not ready to send her through surgery.

Carlarainamint@... wrote:

sorry diagnosed Aedan at 10 days old. He is supposed to be the best NYC has to offer. The question I would have for your doctor is why at 1 year if your childs pupils are fully exposed. Most advice I hear is if the vision is not impeded it is best to wait until the child is older. Aedan may have some vision issues but I don't have that strait yet. I'm in the middle of discussion with Dr. C. But this may or may not have to do with his earlier ptosis. Well I'm off Aedan wants me to read to him.

[Guest guest]

Hi Carla, Clare Teale from Hertford UK. My daughter and I both have BPES. Our doctor Mr Colin, Moorfields London, advised my daughter has surgery at 4 years old, (he did my operation 20 years before - so we trust hm implicitly). Emy (my daughter) seems to be similar to your daughter - she could see well by tipping her head, her left eye drooped more than the right (only a little). We made the decision to wait until she was 4 as she coped well on her own.

I waited till I was 14 years old (and I must say my posture is great) In those days Mr Colin waited till puberty. My sight has been affected loads and loads, my left eye is quite bad but with glasses its rectified.

Im now 35 and my daughter 9 and the decision to wait, for us, certainly was the right one. I do feel every case is different and we do need to be led by our consultants/surgeons. However if you are not happy with the info you have been given (which led you to asking these questions) then do as musch possible research as poss. Ask as many surgeons/consultants etc as you can. You could always e-mail other peoples. Let me know and I will dig out an e-mail address for you. We had to absolutely sure we were doing the right thing at the right age for our daugther and we only made that decision when we had all the facts - from people we trusted.

This is obviously only our experience but I hope it helps a little.

Loads of love

clare and EmyCarla Howell <carlahwll@...> wrote:

, The only reason why is that he does not want her posture to start being effected by having to look up to see. Really the whole point of me joining this group was to get feed back like this so we can decide if surgery is nessasary. I am really questioning the rush of it. nna's left eye does droop more than the right. He told me she will tend to favor this side more which I really dont think she is doing... I am so confused as to what to do. I really am not ready to send her through surgery.

Carlarainamint@... wrote:

sorry diagnosed Aedan at 10 days old. He is supposed to be the best NYC has to offer. The question I would have for your doctor is why at 1 year if your childs pupils are fully exposed. Most advice I hear is if the vision is not impeded it is best to wait until the child is older. Aedan may have some vision issues but I don't have that strait yet. I'm in the middle of discussion with Dr. C. But this may or may not have to do with his earlier ptosis. Well I'm off Aedan wants me to read to him.

[Guest guest]

Clare thank you so much for your email. This input is exactly what we need. I think with the help of the group we are going to be shying away from the surgery until she is a bit older. Or at least get a second opinion. Yesterday my husband received a call from Shireen from London England and she mentioned this doctor in Boston Massachusettes to check out. I emailed her and hopfully I will hear from her today with the name of this doctor. I really want to call him. I would travel anywhere to get this problem taken care of. Our children sound very much alike. Even the doctor said she is not having any visual issues. Her one eye only when she gets tired do droop and block the very top of her pupil. I wish you and Emy the best and thank you again for the support and email.

Carla Clare Teale <clareteale@...> wrote:

Hi Carla, Clare Teale from Hertford UK. My daughter and I both have BPES. Our doctor Mr Colin, Moorfields London, advised my daughter has surgery at 4 years old, (he did my operation 20 years before - so we trust hm implicitly). Emy (my daughter) seems to be similar to your daughter - she could see well by tipping her head, her left eye drooped more than the right (only a little). We made the decision to wait until she was 4 as she coped well on her own.

I waited till I was 14 years old (and I must say my posture is great) In those days Mr Colin waited till puberty. My sight has been affected loads and loads, my left eye is quite bad but with glasses its rectified.

Im now 35 and my daughter 9 and the decision to wait, for us, certainly was the right one. I do feel every case is different and we do need to be led by our consultants/surgeons. However if you are not happy with the info you have been given (which led you to asking these questions) then do as musch possible research as poss. Ask as many surgeons/consultants etc as you can. You could always e-mail other peoples. Let me know and I will dig out an e-mail address for you. We had to absolutely sure we were doing the right thing at the right age for our daugther and we only made that decision when we had all the facts - from people we trusted.

This is obviously only our experience but I hope it helps a little.

Loads of love

clare and EmyCarla Howell <carlahwll@...> wrote:

, The only reason why is that he does not want her posture to start being effected by having to look up to see. Really the whole point of me joining this group was to get feed back like this so we can decide if surgery is nessasary. I am really questioning the rush of it. nna's left eye does droop more than the right. He told me she will tend to favor this side more which I really dont think she is doing... I am so confused as to what to do. I really am not ready to send her through surgery.

Carlarainamint@... wrote:

sorry diagnosed Aedan at 10 days old. He is supposed to be the best NYC has to offer. The question I would have for your doctor is why at 1 year if your childs pupils are fully exposed. Most advice I hear is if the vision is not impeded it is best to wait until the child is older. Aedan may have some vision issues but I don't have that strait yet. I'm in the middle of discussion with Dr. C. But this may or may not have to do with his earlier ptosis. Well I'm off Aedan wants me to read to him.

[Guest guest]

Hello Bob,

I have been working a little on an idea, in my drafts folder, about aspirin,

but it ended up being mainly about EFA's essential fatty acids such as is

found in flaxseed oil, hemp oil, fish oil, etc.

Later I viewed a TV 11:00 p.m. news cast about these omega3's relieving

arthritis pains, and replacing non-steroidal anti-inflammatory drugs,

nsaid's, without the bad side effects of these drugs. It interviewed a lady

who had arthritis and how she stopped using the drugs with the side effects

and found relief by using the Essential Fatty Acid supplements, she said she

is now living a " normal " life from the life before with the drugs.

Perhaps some vinegar, small amount, perhaps yellow mustard, as it has some

vinegar and turmeric, some report may fight alzheimers, and mustard. Perhaps

this mustard " gases " the tape snake everone has, and prevents to a degree

the overwheliming tendency of fermentation from these parasites. In time

perhaps the allergic condition from the parasite inhabited diverticulum can

be gradually dissolved and cleansed, and healed with the EFA's, mustard.

Anyway this is the first food I have found to counteract the high

fermentation process, plain yellow mustard, lots of it mixed in my potato

garlic olive oil salad with some flaxseed oil, and added apple cider vinegar

now and then as desired.

Lenny

Hello friends,

I was studying the page at:

http://www.pcy.us/chem101.htm

and decided to look up prostaglandin. (quote marks include dictionary

definitions)

" Prostaglandins are a group of about 20 lipids that are modified fatty acids

attached to a 5 membered ring. They are found in many vertebrate tissues

where they act as messengers involved in reproduction and in the

inflammatory response to infection. Aspirin inhibits prostaglandin

synthesis, leading to reduced inflammation. "

The link page says that c-AMP production increases when a hormone touches

the target cell membrane, it triggers e. prostaglandin production, which

activates adenylate cyclase, causing the production of more c-AMP. c-AMP is

the " governor " of the cell which governs the activities, without which

allows the cell to become cancerous, or really it is a mathematical relation

between these chemicals, balances, and the materials available to maintain

cell membrane voltage potential. LIfe is a complex array of chemical

interreactions, but these things indicate that aspirin, at regular

consumption could maybe lead to cancer by decreasing prostaglandins.

Instead of taking aspiring to inhibit inflammation, (and increasing ATP

expediture) let us do the more intelligent thing, take plenty of efa's to

keep in balance prostaglandin, the 5 member ring of fatty acids. Flax seed

has EFA's, an old biblical seed used by our ancestors. When I use flaxseeds

or the flaxseed oil, my itcy skin or eczema like irritations go down

similarly like when I used Shaklee liqua-lea, a multivitamin multimineral

supplement.

" Histamine- A substance released by injured cells that causes blood vessels

to dilate during an inflammatory response. "

So, when cell injury occurs, take citrus bio-flavanoid, to repair injured

capillaries, with some vitamin c to form collagen, the intra-cellular

cement, intracellular means between the cells, and take essential fatty

acids to construct a complete and healthy mem-(water)-brane, thus inhibiting

uncontrolled histamine responses by keeping a healthy strong cell wall. And

a healthy cell wall should be less easily penetrated by the injection needle

of the virus, like as a " rubbery " substance would be harder to penetrate

than a " greasy " substance.

The web page above explains c-AMP when insufficient allows cancer to

develop. And the def. tells us that aspirin inhibits prostaglandins which

increase c-AMP production.

Aspirin by inhibiting prostaglandin, decreases the increased production of

c-AMP which is needed to regulate the cellular activities, preventing

increased activity, increased activity to the point of chaos, or

uncontrolled cell growth, cancer.

So EFA's, essential fatty acids play a very important part of cell membrane

voltage potential in yet another way, by decreasing unleashed energy

consumption, by helping the " regulator " c-AMP to " govern " ATP expenditure.

Hope this information helps someone, maybe beware of the dangers of

excessive aspirin consumption,

Lenny

" Prostaglandins are unsaturated carboxylic acids, consisting of of a 20

carbon skeleton that also contains a five member ring and are based upon the

fatty acid, arachidonic acid. There are a variety of structures one, two, or

three double bonds. On the five member ring there may also be double bonds,

a ketone, or alcohol groups. "

p.s. while this was in my drafts folder, I watched a special report on

channel 6, that showed EFA's are antiinflammatory, and can replace

n.s.a.i.d.'s non steroidal anti-inflammatory drugs without the side effects.

another post I made on the beck-n-stuff group

Hi Kreskin,

I think " Take back your power " was a special meeting of interested people at

" The Granada Forum " in California.

I watched this 2 hour video many times.

http://educate-yourself.org/products/index.shtml#bobbeckvideos should have

it, not sure which one is the one I have as mine is almost 2 hours.

A very important and impressive video featuring Bob Beck and then current

electro-medicine, and a suppressed " cure " found at Einstein University in

New York. Bob Beck transformed this " cure " type device to an externally

applied device.

I don't like all the skin irritation problems, so I make my own similar Q2

Energy Spa device at http://www.q2.com.au/ to replace the pulser, and

charge my distilled water, which gives me the same type of effective energy

as I get from the Beck type, pad type pulser.

Drinking this " charged " water and using it in cooking, and for " cleansings "

gives enough energy to replace other electromedicine modalities.

I made a web page trying to illustrate how I made my " Q2 " similar device at

http://www.silver-colloid.com as I could never afford to buy a Q2 Energy

Spa.

Cell membrane permeability and active transport accross this mem-water-brane

seems to be a baseline improvement for all energy type devices in my current

thinking. " Shocks " the scum from " scummy " water off the cell membrane.

Probably in the water within, the energy devices transforms the water in our

bodies to the " water of life " structure, perhaps increasing the amount of

dissolved oxygen in our blood stream as well as that carried by the red

blood cells with hemo-globin.

It is probably this " scum " that decreases permeability and thus " suffocates "

the mitochondrial respiration that produces ATP, which supplies the base

material from which c-AMP is made from, c-AMP the cell " governor "

which keeps activity under control and away from the increasing activities

that go out of control called cancer.

(see at http://www.pcy.us/chem101.htm )

Take care,

Lenny

Hello Group

>

>

> ` Hello Group,I have just joined and I am seeking info on releiving

> or eliminating asthma symptoms and joint pains.Any info would be

> greatly appreciated.

> God Bless,Bob W.

[Guest guest]

Dear Amy, Thank you for this wonderful message. My

Elise is so much like you and your little .

Elise is nineteen now--a beautiful young woman and

very intelligent. She is flourishing at Kansas State

University. She too has been very self conscious

regarding her facial features but that has not stopped

her from success. We have had a humorous moment--she

returned home last spring from college for the summer

with a ring piercing in her lip! I remarked how I

would have preferred a small ring in her nose or

eyebrow and she just looked at me and said " right,

mom--like I have the nose or eyebrow for that! " As

you have said--those who do the teasing, etc. are the

ones with a problem! As Elise grew up through the

years we, as a family, made sure that she knew that

appearances is not what life is all about. She became

very educated regarding BPES and so has all the

information she needs to make future decisions. Best

wishes to all. Joan Nimtz, Wathena, Kansas

--- Amy <mamahinch@...> wrote:

> Dear Group,

>

> I have been away for 2 weeks (mini-vacation from

> the older kids)

> and haven't been on the site. Just got back and was

> reading the

> messages and as usual...they made me tear up! I

> pray for everyone

> every Sunday in Church. Also I have " The

> Blepharophimosis Group " on

> the prayer list. I've come to realize that I can't

> pray for these

> children's eyes to get better, because without

> surgery...that's just

> not gonna happen. I pray mostly that everyone is

> happy and enjoys

> life to the fullest!!! I've talked to quite a few

> of ya'll, either

> thru email or messenger or on the phone, and the

> ones I have talked

> to have more severe cases than my . I have not

> had to go thru

> any teasing yet. However, I was reading some of the

> messages and

> one stuck in my mind. It was from a lady who said

> she had a big

> nose!! I do as well and I was teased in school...I

> can remember how

> that hurt me and I can sympathize with other's who

> have been

> teased. I've come to realize, that I'm not the one

> with a

> problem...It's the person doing the teasing. That

> person is the one

> who is UGLY on the inside. And that's worst than

> anything that I

> went thru or anything these beautiful children will

> go thru....My

> is 11 months old, beautiful and very smart.

> She can walk, say

> uh oh, thank you, and hello. And I recently found

> out she is going

> to be a big sister!!! Just wanted to let everyone

> know that I will

> be praying for the group.

>

> Blessings,

> Amy Hinchman

> West Mifflin, PA

>

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hello Amy,

I just joined this group about two weeks ago, and I am from

Ambridge, Pa. We are neighbors! I am 35 years old, and I have BPES.

I have a five year old daughter, Gloriana. She didn't inherit my

syndrome.

After reading some of the messages here, I now have a better idea of

what my mother went through as I grew up. I'm sure that any stares

or comments hurt her much more than me! I was blissfully naive, at

least until I was about ten. Some of the kids would say I was

Chinese, as if that was such a terrible thing! Now I like the idea

of looking oriental and mysterious! If my daughter had my syndrome,

I would let her know that some people might look at her eyes because

they are unusual and beautiful.

I know the Lord permitted my birth defect, and so I have to be

content with myself. I can't imagine what other path my life would

have taken without it. After high school, I spent a year keeping to

myself because I was so self-conscious, but the Lord used that time

to draw me closer to him, and so it was all worth it!

God bless you, Tera M.

-- In blepharophimosis , " Amy " <mamahinch@y...> wrote:

> Dear Group,

>

> I have been away for 2 weeks (mini-vacation from the older kids)

> and haven't been on the site. Just got back and was reading the

> messages and as usual...they made me tear up! I pray for everyone

> every Sunday in Church. Also I have " The Blepharophimosis Group "

on

> the prayer list. I've come to realize that I can't pray for these

> children's eyes to get better, because without surgery...that's

just

> not gonna happen. I pray mostly that everyone is happy and enjoys

> life to the fullest!!! I've talked to quite a few of ya'll, either

> thru email or messenger or on the phone, and the ones I have talked

> to have more severe cases than my . I have not had to go thru

> any teasing yet. However, I was reading some of the messages and

> one stuck in my mind. It was from a lady who said she had a big

> nose!! I do as well and I was teased in school...I can remember

how

> that hurt me and I can sympathize with other's who have been

> teased. I've come to realize, that I'm not the one with a

> problem...It's the person doing the teasing. That person is the

one

> who is UGLY on the inside. And that's worst than anything that I

> went thru or anything these beautiful children will go thru....My

> is 11 months old, beautiful and very smart. She can walk,

say

> uh oh, thank you, and hello. And I recently found out she is going

> to be a big sister!!! Just wanted to let everyone know that I will

> be praying for the group.

>

> Blessings,

> Amy Hinchman

> West Mifflin, PA

[Guest guest]

Hi Tera,

I'm not really sure where Ambridge is, but it is good to see new

members from PA. There are not many of us. I'm glad that your

daughter does not have the bleph. Just not having to worry about

surgeries and stuff is a good thing. I have been lucky so far.

's bleph is mild and we are getting a second opinion this

coming week. I haven't been satisfied that she really has it. I

actually got the name of the surgeon from a lady in the group who's

father and she have bleph and were patients at this office. When we

first came home from the geneticist, I was determined to find out

where got it from and why. But now, I'm just determined to

make her a happy kid. So far so good. She seems to like us!!!

Your're right about the stares and comments hurting your mom more

than you. I get alot of stares because of 's glasses. But

mostly from teenagers. Most of the adults are just curious how they

can tell at such a young age that she needed the glasses. Of

course, now we can't hardly keep them on her. She is constanly

taking them off and eating them. Her eyes are definatley smaller

than some kids her age, but when she isn't wearing the glasses...NO

ONE has stared at her or asked what is wrong with her. That's how

mild it is. I forget sometimes that she has it!!! I recently found

out I was pregnant and the first thing that crossed my mind was I

hope this one doesn't have it. But that's not in my hands. I'll

take what ever the good lord hands me. Hopefully not twins, but

hey....

Blessings, amy

> Hello Amy,

>

> I just joined this group about two weeks ago, and I am from

> Ambridge, Pa. We are neighbors! I am 35 years old, and I have

BPES.

> I have a five year old daughter, Gloriana. She didn't inherit my

> syndrome.

>

> After reading some of the messages here, I now have a better idea

of

> what my mother went through as I grew up. I'm sure that any

stares

> or comments hurt her much more than me! I was blissfully naive,

at

> least until I was about ten. Some of the kids would say I was

> Chinese, as if that was such a terrible thing! Now I like the

idea

> of looking oriental and mysterious! If my daughter had my

syndrome,

> I would let her know that some people might look at her eyes

because

> they are unusual and beautiful.

>

> I know the Lord permitted my birth defect, and so I have to be

> content with myself. I can't imagine what other path my life

would

> have taken without it. After high school, I spent a year keeping

to

> myself because I was so self-conscious, but the Lord used that

time

> to draw me closer to him, and so it was all worth it!

>

> God bless you, Tera M.

>

>

>

>

> -- In blepharophimosis , " Amy " <mamahinch@y...>

wrote:

> > Dear Group,

> >

> > I have been away for 2 weeks (mini-vacation from the older

kids)

> > and haven't been on the site. Just got back and was reading the

> > messages and as usual...they made me tear up! I pray for

everyone

> > every Sunday in Church. Also I have " The Blepharophimosis

Group "

> on

> > the prayer list. I've come to realize that I can't pray for

these

> > children's eyes to get better, because without surgery...that's

> just

> > not gonna happen. I pray mostly that everyone is happy and

enjoys

> > life to the fullest!!! I've talked to quite a few of ya'll,

either

> > thru email or messenger or on the phone, and the ones I have

talked

> > to have more severe cases than my . I have not had to go

thru

> > any teasing yet. However, I was reading some of the messages

and

> > one stuck in my mind. It was from a lady who said she had a big

> > nose!! I do as well and I was teased in school...I can remember

> how

> > that hurt me and I can sympathize with other's who have been

> > teased. I've come to realize, that I'm not the one with a

> > problem...It's the person doing the teasing. That person is the

> one

> > who is UGLY on the inside. And that's worst than anything that

I

> > went thru or anything these beautiful children will go

thru....My

> > is 11 months old, beautiful and very smart. She can walk,

> say

> > uh oh, thank you, and hello. And I recently found out she is

going

> > to be a big sister!!! Just wanted to let everyone know that I

will

> > be praying for the group.

> >

> > Blessings,

> > Amy Hinchman

> > West Mifflin, PA