Re: Foods, Vitamins, Hydration

[Guest guest]

Barb,

Good to hear from you. Sounds like you had a fairly productive appt with the specialist. Good news is that they know what you have, and now can start with the right tests to get your sarc under control.

As far as foods, vitamins, etc.

Staying away from the foods that are known to cause inflammation-- red meat, refined sugars, processed foods-- sodas, caffeine, high fructose corn syrup-- these are what you want to get away from.

When you take any of the immunosuppresants-- Prednisone, Imuran, Arava, Enbrel, Humira, Remicade, Plaquenil (hydroxychloroquine) you will need to take Folic Acid-- 1mg a day. Don't bother with getting it over the counter--have your MD write a script and get it via your health insurance. That way you know you are getting a controlled amount.

MSM Powder is a godsend. It is a natural mineral that should be in our foods and soil. We've engineered it out, and depleted it from the soils-- there should be over 80 nutrients in our soils, and we only replace 3 in the fields-- so we're asking nature to supply the other 77- and since the crops aren't rotated or even the top of crop changed from year to year-- the nutrients are wiped out.

Add processing by cooking, microwaves, freezing-- and that takes what little bit might be in the food.

MSM is necessary for cellular regeneration, muscle healing and connective tissue healing. I swear by the powder-- I started by using a tsp in 1/4 cup of water, and that horrid "inside the bone pain" is gone in about 10 minutes. I have graduated to using a tbsp in 1/4 cup of water (you can mix it into tea or juice if you don't like the taste) several times a day-- and am able to be off my pain meds.

Milk Thistle (Livatone) is the product I use to keep my liver enzymes in check-- and even after 4 yrs of using Plaquenil for the brain fog and lung issues, Methotrexate for the sarcoid induced arthritis, and Remicade to get the systemic lung and heart and spinal sarc under control-- my liver enzymes are all in the low normal range!

Even with all those 3 drugs, I do still need to take 800 mg of Motrin for the inflammation, and 10 mg of Flexeril for the muscle rigidity-- but what I've found is that I no longer need to take the Oxycodine-- and since I had an issue with prescription pain med dependency and addiction- I really do all I can to stay away from the pain meds.

What I've also figured out is that if I get dehydrated-- my neuropathy goes through the roof-- as well as the sugars (if it's high) my neuropathy again gets really really nasty. So I have to watch both those issues.

If you can afford to get your food from Health Food Stores where you can get "organics" and pesticide free-- you'll find that you do much better. There does seem to be a link between pesticide exposure and "agricultural dust" in those of us that have sarc-- so by eliminating some of the ingestion of these you will see some improvement.

The other thing I'm noticing is that I've started to have some cardiac issues-- in particular pulmonary hypertension-- and pericarditis symptoms (inflammation of the pericardial sac that surrounds the heart) just a few days prior to my Remicade infusion--- and once I get the infusion, I'm good for 3 1/2 wks-- out of 4-- so I'll take it.

You may want to search the MESSAGE ARCHIVES by "dehydration" "pulmonary hypertension" "nutrition" and read some of the posts we've done in the past. There are gazillions-- so if you can't find what you want-- just ask, and we'll try to pull them up or repost some favorites.

For all the newbies-- I can't stress enough the importance of hydration. All your joints, ligaments, and muscles are surrounded by fluids. These fluids act as cushions-- and we run constant fevers-- so we are always right on the edge of being dehydrated. If any part of the electrolytes is out of sync-- then you get more pain in your muscles and ligaments--and the sarc monster finds itself concentrated in places it should not be. The "bone spurs" that many of us have (osteo-arthritis) in our knees, ankles, hands, fingers, ankles-- are generally the result of the immune system having to "heal" a spot-- and then our body doesn't get rid of the white cells, instead it sends the TNF-a, then TNF-b cells, and instead of clearing the white cells out once they've done their job-- we just build upon them-- and that immune response ends up calcified into granulomas. The pain is that those granulomas rub against nerve ends, bone to

bone -- muscle knots, etc-- and now you've got structural damage. And pain. So make sure you get those areas "lubricated" by hydration-- and you will be in less pain.

Hydration will also help keep the lymphatic system moving the toxins through your body and out of the blood stream and out of the kidneys and liver-- so that those organs don't ahve to work so hard. Caffiene, sodas, and alcholol all add insult to injury- as they are "dehydrators!" So stear clear of them!

Hope this helps,

Tracie

NS Coowner/moderator

To: Neurosarcoidosis Sent: Sunday, December 28, 2008 8:14:44 PMSubject: HELLO EVERYONE

HI EVERYONE ! HOPE ALL IS WELL WITH YOU AND YOUR FAMILIES. I WENT TO CLEVELAND THE DAY AFTER X-MAS AND WAS TOLD I HAVE TO SEE A PULMONARY SARC SPECIALIST AND A NEURO IMMUNOLOGIST (WHATEVER THAT IS). I HAVE SARC OF THE SPINE ,BRAIN AND LUNGS. LAUGHING JUST ABOUT KILLS ME FROM SHORTNESS OF BREATH. THANK YOU ALL FOR THE PRAYERS AND BLESSINGS I WISH THE SAME FOR ALL OF YOU. DO ANY OF YOU KNOW IF CERTAIN FOODS OR VITAMINS HELP THIS? I HAVE A LOT OF INVOLUNTARY FACIAL AND MUSCLE SPASMS. I AM HAVING GREAT DIFFICULTY WALKING AND GETTING AROUND . I WAS JUST DIAGNOSED IN AUG OF 08 . SOME OF YOU HAVE BEEN DEALING WITH THIS MONSTER ALONG TIME. I AM TRUSTING GOD I AM BEING LED TO THE RIGHT DOCTORS,MEDICINES, AND SUPPORT GROUPS.!!!!! I CAN'T UNDERSTAND HOW SOME OF YOU ARE WORKING I HAVE TROUBLE JUST TO GET UP TO ANSWER THE PHONE.!! DON'T GET ME WRONG I WILL NOT LET THIS BEAT ME!!!!!!!!!!

!! HAVE A BLESSED AND PAIN FREE DAY YOUR FRIEND BARB

[Guest guest]

Hey group

Does anyone know of a way to go off the caffeine without committing murder. I have drank Diet Pepsi since God knows when. If I go off the caffeine I turn into a real bitch. I don't even want to be around me. Then comes the headaches. I am in enough pain without going through all that. But if there is a way to go about this I would go that route. Any one know how to go about this?

Thanks

Jackie

HELLO EVERYONE

HI EVERYONE ! HOPE ALL IS WELL WITH YOU AND YOUR FAMILIES. I WENT TO CLEVELAND THE DAY AFTER X-MAS AND WAS TOLD I HAVE TO SEE A PULMONARY SARC SPECIALIST AND A NEURO IMMUNOLOGIST (WHATEVER THAT IS). I HAVE SARC OF THE SPINE ,BRAIN AND LUNGS. LAUGHING JUST ABOUT KILLS ME FROM SHORTNESS OF BREATH. THANK YOU ALL FOR THE PRAYERS AND BLESSINGS I WISH THE SAME FOR ALL OF YOU. DO ANY OF YOU KNOW IF CERTAIN FOODS OR VITAMINS HELP THIS? I HAVE A LOT OF INVOLUNTARY FACIAL AND MUSCLE SPASMS. I AM HAVING GREAT DIFFICULTY WALKING AND GETTING AROUND . I WAS JUST DIAGNOSED IN AUG OF 08 . SOME OF YOU HAVE BEEN DEALING WITH THIS MONSTER ALONG TIME. I AM TRUSTING GOD I AM BEING LED TO THE RIGHT DOCTORS,MEDICINES, AND SUPPORT GROUPS.!!!!! I CAN'T UNDERSTAND HOW SOME OF YOU ARE WORKING I HAVE TROUBLE JUST TO GET UP TO ANSWER THE PHONE.!! DON'T GET ME WRONG I WILL NOT LET THIS BEAT ME!!!!!!!!!! !! HAVE A BLESSED AND PAIN FREE DAY YOUR FRIEND BARB