Is anyone into Nutritional therapy for Sarcoidosis?

[Guest guest]

Hi,

I was wondering if there are non-traditional healers in this support

group?

I am not on any medicine but treat myself with diet, herbs, exercises,

etc.

When symptoms pop up or move around I go to my Nutritional bible or

the World Websites to find something in my cupboard to swallow, drink,

eat, or rub on to make life bareable again. It is amazing what the

right foods can do or the correct exercise.

Just wondering. Thanks for being here for folks.

Clare

[Guest guest]

Clare,

I've experimented with several concepts, and am a 1st Degree Reiki Healer.

One of the biggest challenges we face is that with sarcoidosis being an auto-immune disease, our immune system sees even the healthy parts of us as diseased. So, when the immune system was turned on, the off switches never have shut if off.

One of the things our bodies do is to send out white blood cells to take care of an injury or infection. Then those cells are followed by TNF-a and TNF-b cells. These are supposed to clean out the white cells, once the injury or infection is cured.

TNF-a and TNF-b are both blood proteins, and we produce to many TNF-b cells, which then conglomerate onto the white and TNF-a, producing granulomas.

If we take immune enhanching herbs and such, then we are strengthening our immune system, however- for us that means that we're helping it to attack healthy tissue. This is why we end up on immuno-suppresants.

I've looked into several different diets-- including the Gerson Therapy Diet-- it's worth looking at. It's extreme, but it is focused to rebalance all that is out of balance.

Another one that is helping me-- and I've just started with it-- is the SUGAR SOLUTION DIET. PREVENTION MAGAZINE has put this book out, and it's great to address the blood sugar issues we face due to years of steroids and immunosupressants. It explains in detail the "metabolic syndrome" that we all seem to come up against. And as I like to refer to it-- the program is idiot proof-- so for those of us that have lost so much energy and ability to think thru a meal plan that will help keep our blood sugar in sync, it's spelled out for us. And it's food that we all can handle making-- and enjoy.

The other things that I've discovered over the years is that both hydration and getting the right minerals back into my body help my nerve pain as well as the sarcoidosis induced arthritis.

You'll hear me sing my hydration song alot. The least minor amount of dehydration, and my nerve pain is sending me through the roof. Caffeine, alcohol, soda's all dehydrate. Too much in the way of juice- and my sugar soars, and so does my neuropathy.

I've found that when my bones hurt from the inside---- that MSM Powder (PureMSM.com) works wonders. I also will take Calcium/Magnesium but for me, I don't have high calcium levels--so it's not a problem. I do take it when my pain gets high--especially the muscle and joint pain. It seems to help.

Having been dependent on prescription pain meds-- (addicted to)-- I have been able to stay away from pain meds now for 15 yrs by using guided meditation, visualization and the MSM. (I do have morphine on hand, but haven't used any since last Jan.)

I've found that simple exercise - arm raises w/wo weight (1# to start) marching in place (sit in a chair and do it sitting down), swimming on dry land (move those arms in a crawl) do help. You start with one or two or five of each, then add one or two more over days-- and if done at least 3x a week, you will get stronger. (You can use canned soup or spaghetti noodles or pencils or whatever as your weights. No extra cost needed.) I also go to pulm rehab 3x a week, and do 15min on a treadmill and 10-25 min on a stationary bike-- at slow speed--very slow, since the lungs don't work well. We can manage my pulm fibrosis there.

I've done a few emails on the subjects of Herbs, etc-- and others have also commented-- look in the ARCHIVES in the 1st 2 yrs, and you'll find numerous posts on this subject.

Let us know how else we can help,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Clare,Too many of the herbs interact with my meds so not something I can do. But whatever works for you! I do listen to meditation CD's and DVR taped sermons of my favorite pastor who helps me to feel at ease. This group is wonderful to be able to share feelings and knowledge about this disease. That's a biggie in my book.Blessings,Beckyweebeit wrote: Hi, I was wondering if there are non-traditional healers in this support group? I am not on any medicine but treat myself with

diet, herbs, exercises, etc. When symptoms pop up or move around I go to my Nutritional bible or the World Websites to find something in my cupboard to swallow, drink, eat, or rub on to make life bareable again. It is amazing what the right foods can do or the correct exercise. Just wondering. Thanks for being here for folks. Clare

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[Guest guest]

Hi Clare. I was wondering if some foods made the condition worse? How

do you know what to try? Are your dietary changes for specific

symptoms or the disease in general?

-

>

> Hi,

> I was wondering if there are non-traditional healers in this support

> group?

> I am not on any medicine but treat myself with diet, herbs, exercises,

> etc.

> When symptoms pop up or move around I go to my Nutritional bible or

> the World Websites to find something in my cupboard to swallow, drink,

> eat, or rub on to make life bareable again. It is amazing what the

> right foods can do or the correct exercise.

>

> Just wondering. Thanks for being here for folks.

> Clare

>

[Guest guest]

Hi Tracie, I have several friends with Reiki degrees and I truly respect their wisdom. Although none of them has the knowledge on the word Sarcoidosis they do offer great support through the channels. I have spent considerable time researching the illness and so am careful about taking stuff for the immune system that is not specific to Sarcoidosis therapy. Mostly the stuff I use is food I need to eat anyway, such as lots of un cooked veggies, fruits, and nuts. I don't use sugar, salt, grains of any sort no dairy (except egg yolk for the eyes), coconut oil seems to help me, Quinoa is a great filler and protein rich. I learned many years ago no potatoes, egg plant, or tomatoes as they seem to cause me to swell up everywhere. Thanks for the info on "Gerson Therapy Diet" I will check it out for sure. One therapy I have used is called "Glycobiology" using glycoproteins to re-create balance in the body. The water thing is no

problem with me as having diabetes insipidis symptoms off and on I always crave water. My problem is being careful not to drink too much and flush the vitamins & minerals away. Your exercises you mentioned are close to some I am doing. Boy do they help me get through my day. I take no meds as even aspirin effects what little hearing I have left and causes ringing in my head not to mention an awful lightheaded feeling, fevers, etc. So treating my neurosarcoidosis with food is all that I have today. Always hoping and staying away from negitive energy has helped 100%. Hang around happy people and the pain is not so bad then. I do need lots of help with finding a better doctor as mine knows nothing about neurosarcoidosis, in fact there are not any specialists in my area who treat it. Closest place for me is Seattle. Also need help finding work that I can do at home. A lot of scams out there makes that scary. I was

a mental health counsilor before last bout of sarcoid entered my life in 2002. Lastly I am trying to fight SSDI for sarcoidosis problems that are compounded by deafness, age, and I don't have the energy to leave the house anymore. Do you know if many folks have won their SSDI claims? and how did they do it? Thank you for taking the time to write me. I really appreciate any information I recieve, and being able to read others comments is a BIG help. Sincerly, Clare tiodaat@... wrote: Clare,I've experimented with several concepts, and am a 1st Degree Reiki Healer. One of the biggest challenges we face is that with sarcoidosis being an auto-immune disease, our immune system sees even the healthy parts of us as diseased. So, when the immune system was turned on, the off switches never have shut if off. One of the things our bodies do is to send out white blood cells to take care of an injury or infection. Then those cells are followed by TNF-a and TNF-b cells. These are supposed to clean out the white cells, once the injury or infection is cured. TNF-a and TNF-b are both blood proteins, and we produce to many TNF-b cells, which then conglomerate onto the white and TNF-a, producing granulomas.If we take immune enhanching herbs and such, then we are strengthening our immune

system, however- for us that means that we're helping it to attack healthy tissue. This is why we end up on immuno-suppresants. I've looked into several different diets-- including the Gerson Therapy Diet-- it's worth looking at. It's extreme, but it is focused to rebalance all that is out of balance. Another one that is helping me-- and I've just started with it-- is the SUGAR SOLUTION DIET. PREVENTION MAGAZINE has put this book out, and it's great to address the blood sugar issues we face due to years of steroids and immunosupressants. It explains in detail the "metabolic syndrome" that we all seem to come up against. And as I like to refer to it-- the program is idiot proof-- so for those of us that have lost so much energy and ability to think thru a meal plan that will help keep our blood sugar in sync, it's spelled out for us. And it's food that we all can handle making-- and enjoy.The other things

that I've discovered over the years is that both hydration and getting the right minerals back into my body help my nerve pain as well as the sarcoidosis induced arthritis. You'll hear me sing my hydration song alot. The least minor amount of dehydration, and my nerve pain is sending me through the roof. Caffeine, alcohol, soda's all dehydrate. Too much in the way of juice- and my sugar soars, and so does my neuropathy.I've found that when my bones hurt from the inside---- that MSM Powder (PureMSM.com) works wonders. I also will take Calcium/Magnesium but for me, I don't have high calcium levels--so it's not a problem. I do take it when my pain gets high--especially the muscle and joint pain. It seems to help. Having been dependent on prescription pain meds-- (addicted to)-- I have been able to stay away from pain meds now for 15 yrs by using guided meditation, visualization and the MSM. (I do have

morphine on hand, but haven't used any since last Jan.) I've found that simple exercise - arm raises w/wo weight (1# to start) marching in place (sit in a chair and do it sitting down), swimming on dry land (move those arms in a crawl) do help. You start with one or two or five of each, then add one or two more over days-- and if done at least 3x a week, you will get stronger. (You can use canned soup or spaghetti noodles or pencils or whatever as your weights. No extra cost needed.) I also go to pulm rehab 3x a week, and do 15min on a treadmill and 10-25 min on a stationary bike-- at slow speed--very slow, since the lungs don't work well. We can manage my pulm fibrosis there. I've done a few emails on the subjects of Herbs, etc-- and others have also commented-- look in the ARCHIVES in the 1st 2 yrs, and you'll find numerous posts on this subject.Let us know how else we can help,TracieNS

Co-owner/moderator

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[Guest guest]

Hi wendy, Well I am not sure on that one but do know the things I do try are specific for Sarcoidosis related issues. Staying away from sugar and salt are something most people could do. I also do not use cooking oils except for olive or coconut to cook with and no butter or margarine. The celiac diet has been wonderful for my health and the paleo would not hurt either. Most of us eat too much meat so I try hard to keep meat portions at one serving of 2 ozs per day. The rest of my protein comes from non meat items (Quinoa (a non grain or seed like cereal that is a complete protein) No peanut butter or beans and those sorts of things. Or tomatoes, peppers, eggplants or potatoes) as they are poison in my body. Drink lots of pure water helps while a cup of coffee or can of soda pop does not (just drains the water out of the cells). Herbs; I only use the ones for the eyes and they help with dry eye and swelling. Right now those are

Bilberry and Roosibos. I eat lots of raw veggies and fruits and no juices. No milk or other dairy except for egg yolk for protein and to bind my unleavened nutmeal breads. Vitimans: A, B complex, C, and E. That is about it and the exercises for shoulder pain. I sleep with no pillow to control headaches. When I use a pillow my lower faces goes numb during the night as well. Do you follow and diets or therapys such as nutritional healing? Thanks, Clarewendy_cidp wrote: Hi Clare. I was wondering if some foods made the condition worse? Howdo you know what to try? Are your dietary changes for specificsymptoms or the disease in general?->> Hi,> I was wondering if there are non-traditional healers in this support > group? > I am not on any medicine but treat myself with diet, herbs, exercises, > etc.> When symptoms pop up or move around I go to my Nutritional bible or > the World Websites to find something in my cupboard to swallow, drink, > eat, or rub on to make life bareable again. It is amazing what the > right foods can do or the correct exercise.> > Just wondering. Thanks for being here for folks.>

Clare>

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[Guest guest]

Hi Claire,

I am not currently into Nutritional therapy, although I am interested in

this and have switched to eating Organic foods for this reason, I am sure

lots of others would be interested too - That's if I could find alternatives

for all my medicines.

Would you be so kind as let me and others on the site know what kind of

symptons you experience and how you have used food and exercise to help

this?

Thanks

Becky

(UK)

>

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: Is anyone into Nutritional therapy for

>Sarcoidosis?

>Date: Wed, 01 Nov 2006 14:35:54 -0000

>

>Hi,

>I was wondering if there are non-traditional healers in this support

>group?

>I am not on any medicine but treat myself with diet, herbs, exercises,

>etc.

>When symptoms pop up or move around I go to my Nutritional bible or

>the World Websites to find something in my cupboard to swallow, drink,

>eat, or rub on to make life bareable again. It is amazing what the

>right foods can do or the correct exercise.

>

>Just wondering. Thanks for being here for folks.

>Clare

>

>

_________________________________________________________________

Windows Live™ Messenger has arrived. Click here to download it for free!

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[Guest guest]

Hi Becky, Sounds like you already have made some changes in your diet with the organic foods. I am not sure which symptoms you're taking meds for but for me I have the traveling salesman type neuro, mostly but sometimes it travels down into the legs, swells the right daddy toe, stays awhile and goes somewhere else. That one is not so bad. The scary stuff is the facial numbness, sore, dry eyes, decreased sight & hearing (already profoundly deaf in one ear and deaf in the other) sores on the back of my head, muscle-joint pain in upper shoulders and neck, re-occurring shingles, rashes. Tiredness, depression, pain, etc. I had all the bad stuff as a 2 year old, diabetes insipidus, Non Hodge-kins disease, Bell's palsy, deafness, leukemia, lymph nodes, mastoids, adenoids, all of it. Somehow I out grew most of it but when I started to age (late 40's) it started up again, slowly

at first. Eyes, then ear infections and things just continued to snowball. (I turn 59) in December. I had to quit work finally so became Dad's caregiver for 2 years. The reduced stress of not going to the office helped some so things were ok until this spring. Wham! I had symptoms everywhere. Couldn't get a doctor who even knew how to spell sarcoidosis, let alone treat me. I turned to the net searching for information when my shingles popped up again, I was ready and used licorice root tea rubbed on the nerves (it worked and I was hooked) I have used aloe vera in my eyes to take away the swelling, blurred vision, and dryness. It works for me anyway and it is standard treatment in some countries or so the web pages say. The exercises for my sore shoulders is from another web site and is really simple. Everyday I do 6 or so of these called "trigger point therapy" exercises for my arms. My shoulders are much improved and I can type

for an hour or so (before I a few minutes caused awful pain in the shoulders) Not perfect, but I can live with that, and being able to lay down in bed to sleep does wonders for relieving depression (I sometimes slept sitting up because laying down hurt too much) According to my kids my diet sucks! No fun stuff they say. Only fresh foods are allowed and those have no preservatives, additives, sugar, added salt, grains, dairy, (except egg) mostly non meat protein. That one scared me as I worried about not getting enough of it, but I found eating 2 ozs. of fish or other lean meat daily is fine. There are lots of nut meal flours (I grind my own) arrowroot starch, Quinoa, a stand alone high protein type seed cereal from S. America, olive or coconut oil to fry my unleavened flat breads in and a host of unsweetened fruit butters made this summer from our fruit trees and berry bushes. Eating raw is best but it gives me digestive problems so I flash cook my

veggie 50% of the time. Lots of water! that is about it. I hope this e-mail was not to long. But I feel the above information is saving my life while searching for a treatment center near me. I am unemployed, no insurance, and taking things one day at time. Thank God I had some savings when I crashed in May. I am interested in other people's thoughts on natural self help ideas. I always research everything before I try anything new to make sure it is even safe for my sarcoidosis condition. Take care and have a nice night. Clare Becky wrote: Hi Claire,I am not currently into Nutritional therapy, although I am interested in this and have switched to eating Organic foods for this reason, I am

sure lots of others would be interested too - That's if I could find alternatives for all my medicines.Would you be so kind as let me and others on the site know what kind of symptons you experience and how you have used food and exercise to help this?ThanksBecky(UK)>From: "weebeit" >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: Is anyone into Nutritional therapy for >Sarcoidosis?>Date: Wed, 01 Nov 2006 14:35:54 -0000>>Hi,>I was wondering if there are non-traditional healers in this support>group?>I am not on any medicine but treat myself with diet, herbs, exercises,>etc.>When symptoms pop up or move around I go to my Nutritional bible or>the World Websites to find something in my cupboard to swallow, drink,>eat, or rub on to make

life bareable again. It is amazing what the>right foods can do or the correct exercise.>>Just wondering. Thanks for being here for folks.>Clare>>_________________________________________________________________Windows Live™ Messenger has arrived. Click here to download it for free! http://imagine-msn.com/messenger/launch80/?locale=en-gb~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Clare,

You have given me some great information here, I shall have a look at this

in greater detail and get back to you.

Take care and speak soon,

Becky

(UK)

>

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: RE: Is anyone into Nutritional therapy for

>Sarcoidosis?

>Date: Wed, 8 Nov 2006 22:24:08 -0800 (PST)

>

>Hi Becky,

>

> Sounds like you already have made some changes in your diet with the

>organic foods. I am not sure which symptoms you're taking meds for but for

>me I have the traveling salesman type neuro, mostly but sometimes it

>travels down into the legs, swells the right daddy toe, stays awhile and

>goes somewhere else. That one is not so bad. The scary stuff is the facial

>numbness, sore, dry eyes, decreased sight & hearing (already profoundly

>deaf in one ear and deaf in the other) sores on the back of my head,

>muscle-joint pain in upper shoulders and neck, re-occurring shingles,

>rashes. Tiredness, depression, pain, etc.

>

> I had all the bad stuff as a 2 year old, diabetes insipidus, Non

>Hodge-kins disease, Bell's palsy, deafness, leukemia, lymph nodes,

>mastoids, adenoids, all of it. Somehow I out grew most of it but when I

>started to age (late 40's) it started up again, slowly at first. Eyes, then

>ear infections and things just continued to snowball. (I turn 59) in

>December.

>

> I had to quit work finally so became Dad's caregiver for 2 years. The

>reduced stress of not going to the office helped some so things were ok

>until this spring. Wham! I had symptoms everywhere. Couldn't get a doctor

>who even knew how to spell sarcoidosis, let alone treat me. I turned to the

>net searching for information when my shingles popped up again, I was ready

>and used licorice root tea rubbed on the nerves (it worked and I was

>hooked) I have used aloe vera in my eyes to take away the swelling, blurred

>vision, and dryness. It works for me anyway and it is standard treatment in

>some countries or so the web pages say.

> The exercises for my sore shoulders is from another web site and is

>really simple. Everyday I do 6 or so of these called " trigger point

>therapy " exercises for my arms. My shoulders are much improved and I can

>type for an hour or so (before I a few minutes caused awful pain in the

>shoulders) Not perfect, but I can live with that, and being able to lay

>down in bed to sleep does wonders for relieving depression (I sometimes

>slept sitting up because laying down hurt too much)

> According to my kids my diet sucks! No fun stuff they say. Only fresh

>foods are allowed and those have no preservatives, additives, sugar, added

>salt, grains, dairy, (except egg) mostly non meat protein. That one scared

>me as I worried about not getting enough of it, but I found eating 2 ozs.

>of fish or other lean meat daily is fine. There are lots of nut meal flours

>(I grind my own) arrowroot starch, Quinoa, a stand alone high protein type

>seed cereal from S. America, olive or coconut oil to fry my unleavened flat

>breads in and a host of unsweetened fruit butters made this summer from our

>fruit trees and berry bushes. Eating raw is best but it gives me digestive

>problems so I flash cook my veggie 50% of the time.

> Lots of water! that is about it. I hope this e-mail was not to long. But

>I feel the above information is saving my life while searching for a

>treatment center near me.

> I am unemployed, no insurance, and taking things one day at time. Thank

>God I had some savings when I crashed in May.

> I am interested in other people's thoughts on natural self help ideas. I

>always research everything before I try anything new to make sure it is

>even safe for my sarcoidosis condition.

> Take care and have a nice night.

> Clare

>

>

>

>

>Becky becky.d@...> wrote:

> Hi Claire,

>

>I am not currently into Nutritional therapy, although I am interested in

>this and have switched to eating Organic foods for this reason, I am sure

>lots of others would be interested too - That's if I could find

>alternatives

>for all my medicines.

>

>Would you be so kind as let me and others on the site know what kind of

>symptons you experience and how you have used food and exercise to help

>this?

>

>Thanks

>

>Becky

>(UK)

>

>

>

>

> >From: " weebeit "

> >Reply-To: Neurosarcoidosis

> >To: Neurosarcoidosis

> >Subject: Is anyone into Nutritional therapy for

> >Sarcoidosis?

> >Date: Wed, 01 Nov 2006 14:35:54 -0000

> >

> >Hi,

> >I was wondering if there are non-traditional healers in this support

> >group?

> >I am not on any medicine but treat myself with diet, herbs, exercises,

> >etc.

> >When symptoms pop up or move around I go to my Nutritional bible or

> >the World Websites to find something in my cupboard to swallow, drink,

> >eat, or rub on to make life bareable again. It is amazing what the

> >right foods can do or the correct exercise.

> >

> >Just wondering. Thanks for being here for folks.

> >Clare

> >

> >

>

>_________________________________________________________________

>Windows Live™ Messenger has arrived. Click here to download it for free!

>http://imagine-msn.com/messenger/launch80/?locale=en-gb

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

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>

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>SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

>OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

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