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Morpheus
12-18-2009, 02:40 PM
Hi all
Been a while since Ive posted,but do keep in touch daily with all the latest posts.
Ive recently come across a blog http://www.linkremoved.com/
The author swears by raw foods, and how it virtually cured her of lupus.

also mentioning one of the supplements she included in her diet...
Dehydroepiandrosterone (DHEA) which I believe is beneficial to lupus patients for memory loss and mood swings (according to my research)
Has anyone used this?
Been on a raw foods diet?
Please let me know if either has benfited you any.

also can males with lupus also use DHEA to get alleviation?

Saysusie
12-20-2009, 10:35 AM
First: WOW, it's been a while since we've heard from you! It is so good to hear from you. I hope that you've been well and that things are going well for you. When you have time, you must catch us up on what you've been doing.
Now....
I've heard of many patients using DHEA, some of them are family members here. I've not heard too many negatives about it.
I do not know anyone who's tried the raw food diet. Didn't we talk about trying this diet once before? Have you tried it? Has it worked for you?

Again........it is so good to hear from you, you were missed!

Peace and Blessings
Namaste
Saysusie

Angel Oliver
12-20-2009, 12:53 PM
welcome back and thannks for the link i will look.Ive never tried it but have heard good things about these raw foods and diets.If you try it let me know how you get on.

Lots of love
Amanda.xxxx

scubagramplit
12-24-2009, 08:19 PM
I printed out the raw food diet from Lisa LaMendola's web site and started it last night, that and having a 11/2 hr massage the night before and eating just raw foods today I must say that after flairing for a month and a half today is the best I have felt in I do not know how long. I don't know for sure if it is the diet or the massage however I entend to keep going on both of them and see what comes of it. I will keep all posted on this.

rob
12-26-2009, 12:08 AM
I'm sorry to be the downer here, and I'm certainly not telling anyone else what to do. This is strictly my opinion only.

So, here I go...

I am sick and tired of people starting websites, and making infomercials that constantly talk about how they supposedly have "autoimmune disorders" and how they are now cured, or "lupus free" because of what they do, or do not eat.

I find that NONE of these people have any scientifically based, clinically tested, or peer reviewed results to back up ANY of their claims. I am tired of people trying to pass off a bunch of bulls**t with absolutely NO proof whatsoever to back up what they propose.

This Raw Food woman talks of giving up treatments that simply "mask" the symptoms of Lupus. Well, those awful treatments have kept me alive for SIX YEARS NOW! I have SLE, and I have MS. Those drugs mask NOTHING! Those drugs people want to demonize have kept me not only alive, but have given the quality of life I require to be able to get up every day and say to myself that yes, this is still worth it.

Anyway, Morpheus, this is by no means a reflection on you for starting this thread. I am glad you brought this to everyone's attention, and I respect your, as well as everyone else's opinion. I simply have a strong opinion on the subject, and I felt the need to let it be known. If I really believed that these people were telling the truth about their diagnosis, and if they had some sort of scientific proof to back up their claims, I would certainly consider their philosophy. But, they provide none.

Thanks for letting get up on the soapbox for a bit.

Rob

scubagramplit
12-26-2009, 05:45 AM
Good morning Rob. I hope that you had a merry Christmas, ours was peacefull and for the most part relaxing. I most certainly do appreciate your thoughts on on the raw food diet, I am learning that with this blessing/burden that God has put upon us it is good to hear more than one opinion. the way that I was reading the web site, and I agree that at first just reading the head line it sounds like she is purporting a claim to have cured lupus, it she goes on to explain that she is not cured from lupus, and maybe it is a coincedence that she has been in remitance, but being in remitance she also attributes to her diet. I am not concidering going against dr. orders on my meds however I do not see the harm in trying a different way of eating, especially if it will make you feel better. I have noticed that when I eat some foods I just do not feel all that great. I already take most of the vitaming supplements. All that being said, I will keep posted here with updates on how it is going. God bless. JIm.

rob
12-26-2009, 06:21 AM
I'm sorry guys, I am just a grouch about some things lately. People pushing "traditional", or alternative treatments are a pet peeve of mine, and I get into some rather heated exchanges with some definite frauds from time to time, so I tend to go off sometimes. Maybe I'm in need of a little stress relief.

Anyway, I had a good Christmas Jim. Good to hear yours went well too.

If I rant too much, just tell me to chill out!:laugh:

Rob

scubagramplit
12-26-2009, 06:48 AM
Hey Rob, you do not rant to much and I did not take it that way, I agree with what you are saying, it gets back to the saying with most people, if you don't got it you just don't get it, glad to see your up this morning. I thought I was the only one that couldn't sleep in. This would be my second day with the diet and I must say at this point I feel pretty good. Might be a cooincedence or maybe some other factors. I did get a good massage Tues. Ooohh, that was good. It could be going back up to 20mg prednisone also, I don't know but I will see how things go. I pray that all goes well and take care. God bless. Jim.

debbie-b
12-26-2009, 08:04 AM
I'm sorry guys, I am just a grouch about some things lately. People pushing "traditional", or alternative treatments are a pet peeve of mine, and I get into some rather heated exchanges with some definite frauds from time to time, so I tend to go off sometimes. Maybe I'm in need of a little stress relief.

Anyway, I had a good Christmas Jim. Good to hear yours went well too.

If I rant too much, just tell me to chill out!:laugh:

Rob

I totally understand, where you're coming from.
My friend is a Reiki Master and is bugging me for years, to let her give me a treatment. But in order for the treatment to " work", I would have to stop all my meds. What, am I stupid?
I declined her service offer and told her that I don't believe in it. After all, she is the one who told me, that she is treating a woman for years now, who has RA and she coudn't help her.
I can see, where a well balanced diet could benefit all of us, not just sick people, but going to the extreme, would be harmful.
But that is only my opinion.

Debbie

magistramarla
12-26-2009, 10:47 AM
I definitely agree here that we can mix the "traditional" treatments with modern medicine. Gee, even a massage could be considered a "traditional" treatment. (I'm jealous, Jim)
Jeff has been giving me a handful of vitamins and nutrients every morning for years now, and I think that it has done a lot of good. When I first started having regular blood tests three years ago, my doc remarked on how high the levels of several nutrients were in my blood. She told me "Whatever you're eating or doing, keep on doing it." The great rheumy that I had in SA pushed fish oil. I had resisted Jeff on that one, since it made me burp fish all day, but I gave in, and he found one that has citrus added, so it's not so bad.
As for raw foods, back when I was a La Leche League leader, we called it Whole Foods. I still have the great little cookbook called "Whole Foods for the Whole Family". I started cooking healthy meals for my family 32 years ago. I learned back then to do most of my shopping in the supermarket "along the edges". This means buying most of your groceries from the fresh produce section, then the frozen section, then dairy and eggs (if no allergies to dairy). Most of the stuff in the middle aisles are highly processed and often full of things that are not good for us. These are also the big money-makers that the manufacturers really push at us, too. I learned way back then to read labels carefully and to buy the brands that were least processed and had better ingredients, like less high fructose corn syrup. I had one kid who had an allergy to the chemical that is used in canning vegetables. I learned very quickly to avoid that aisle and to buy all my veggies fresh or frozen. My girls and I all react to aspartame with bad migraines, so I learned to carefully watch out for that stuff.
All of these years of eating right has kept us healthy (and relatively slim), but it still didn't prevent my having AI issues. I truly believe that I inherited them from my mother's side of the family. So, like Rob, I'll continue to take the meds that modern medicine has come up with to help me, but I'll always supplement that with the good foods and the vitamins and supplements that seem to help my general health and well-being.
As Socrates said - "All things in moderation".
Just my two cents worth,
Marla

scubagramplit
12-26-2009, 07:13 PM
Magistramarla, I thank you for your 2 pennies, haha. not to rub it in any more but that massage was an hour and a half:) and it was great. I think I will continue trying to eat a lot more healthy, continue to take my meds and continue to take my supplements. Today would be day three and I do not feel as energetic as yesterday wich wasn't as good as the day before. It is quite possible that it was more to do with the massage than anything else, oh yeah, my headache is back Grrrrr:( Did I mention that I do massage?

rob
12-26-2009, 08:16 PM
My sister is a licensed massage therapist, I got coupons for 12 free massages from her for Christmas. She's really good. Makes you feel like jello after she's done!

magistramarla
12-26-2009, 10:55 PM
OK guys,
You are really making me jealous. My DH gives me massages, but he is just not that good at it. I've had some good professional massages back in SA, and the very best one I ever had was at Caesar's Palace in Las Vegas. I wish that I could get another one like that!
Marla

kim,l
12-27-2009, 02:06 AM
hi everyone i have a question on this food subject i know some people say there are certain foods you should not eat i get confused can you tell me is there any foods that are absolute no no to eat i am worrying now that i may be contributing to my flares if i am eating wrong if anyone could help i would be grateful as i have coliacs disease and suffer stomach problems i am worried if i keep on cutting out foods i might as well be on liquid diet and a massage sounds great to me maybe we should all treat ourselves once and awhile to a massage or something that makes us feel better and make this a goal to look forward to we all need a little pampering sometimes.

scubagramplit
12-27-2009, 10:11 AM
My sister is a licensed massage therapist, I got coupons for 12 free massages from her for Christmas. She's really good. Makes you feel like jello after she's done!

yeah check, and makes you feel good for at least a few days after:)

scubagramplit
12-27-2009, 10:16 AM
OK guys,
You are really making me jealous. My DH gives me massages, but he is just not that good at it. I've had some good professional massages back in SA, and the very best one I ever had was at Caesar's Palace in Las Vegas. I wish that I could get another one like that!
Marla

magistramarla, if you ever get up this direction let me know, I did go through half of a massage school to get licensed a few years ago, I would be more than willing to give massages to my lupus friends, I do have the table and everything, and you can't beat the price, I do not charge. God bless, Jim.

scubagramplit
12-27-2009, 10:23 AM
Kim check out this site that I came accross this morning, http://www.archure.net/salus/nightshade.html , I thought it was some good info. I am sure there will be others that will come along that will have more info than I do, good luck and best wishes. God bless, Jim.

Oberata
12-27-2009, 12:56 PM
ROB et. al:

I can't think of a more frustrating medium (an online forum) to debate this MONSTER of an issue. I've been on polar opposite ends of the nutrition discussion, both experentially and conceptually.

There is so much to it; the biggest theme is probably that "Clean" diets are never tried for long enough (e.g. 3 years) to produce desired results. Yet, I realize that wholesale prescriptions of this diet or that are useless, since everyone's chemistry and condition are different. Nonetheless, we'll fare better with broccoli over bratwurst, right?

Rob, there is only one real answer, and it's between us at a pub somewhere between Maine & TX. Thanks for not being afraid - and open - simultaneously. I feel like WHL may be a place for me to vent as well (sometimes).

That being said, at other times I may feel like getting the hell away from you people. Thanks for the welcome & blog comments.

Happy Holidays.
JT

kim,l
12-27-2009, 03:01 PM
thankyou you jim for the link it was interesting and also rob thankyou for your comments you are right i do not intend going off my medication in favour of a diet as they keep most of us alive its so frustrating when not knowing what to do when you hear so many different things about howeating different foods can help but if i do cut out all the different foods i have been told to there will be nothing left because i have coliacs my diet is restrictive already no wonder we get frustrated and cranky sometimes again thankyou all i will take everyones advice on board and adjust were i need to i know everyones body is different it is just great to be able to have such a good site to come to i have tried to contact lupus support groups here but they will not return my call.but i do not care i still have all of you with your wealth of knowledge thankyou i am happy to be a part of this family. hugs kim l

BonusMom
12-27-2009, 03:03 PM
My sister is a licensed massage therapist, I got coupons for 12 free massages from her for Christmas. She's really good. Makes you feel like jello after she's done!

I think your family should adopt me, Rob! I'm house broken, have all my requisite "papers", am SLE certified, can make a mean pasta carbonara, pot roast, fried chicken and awesome mashed spuds, with gravy AND I appreciate a great massage therapist!

Am I the only one who is unable to tolerate deep tissue massage? I had one several years ago and couldn't walk for three days afterwards-definitely not the result I was looking for!

debbie-b
12-27-2009, 06:11 PM
I think your family should adopt me, Rob! I'm house broken, have all my requisite "papers", am SLE certified, can make a mean pasta carbonara, pot roast, fried chicken and awesome mashed spuds, with gravy AND I appreciate a great massage therapist!

Am I the only one who is unable to tolerate deep tissue massage? I had one several years ago and couldn't walk for three days afterwards-definitely not the result I was looking for!

Hi bonus mom,

You are not the only one, I can't stand massages, because my skin, tissues, muscles, bones and joints hurt so much. And if anybody touches my spine, I scream out in pain and hit the ceiling.
A girl at work came up behind me and massaged my neck, I pulled away, crying out in pain. She felt so bad, but I told her it was just me and Mr. Lupus, we can't stand to be touched.

Debbie

scubagramplit
12-27-2009, 06:46 PM
for both debbie and bonus mom you might want to try a very light touch relaxing massage where they are not using pressure in the muscles and they shouldnt be massaging deep into the joints anyway.

magistramarla
12-27-2009, 10:35 PM
Same here, guys. The one time that I had a deep tissue massage, I was bruised and sore afterward. However, the more gentle "therapeutic" massages are wonderful.
Marla

scubagramplit
01-02-2010, 08:40 PM
Happy new year everybody, I just wanted to give an update on my raw food diet that I decided to try out. today is day six for me and this morning my wife comented that HEEEES BAAACK, I do feel a bit more energized and a little less grumpy. I did see my rheumy on wednesday and mentioned the raw food diet to him and he was pleased with my decision and told me that the lupus foundation of america is actually looking into this(raw food & mediteranian diets) as a treatment tool for lupus. Just my experiences so far. God bless, Jim.

BonusMom
01-02-2010, 09:14 PM
Glad that you got in to see your "old" rheumy, Jim, and that you're feeling better on the RAW Food Diet. More importantly, I bet your wife is thrilled to have the "old" hubby back....yeah!

magistramarla
01-02-2010, 09:38 PM
The old Latin teacher here has been trying to put as many Mediterranean recipes into our diets as possible. I'm glad that it is healthy for us, since I truly love Italian and Greek foods!
Marla

Saysusie
01-03-2010, 01:36 PM
Scubagramplit;
I am so glad that the raw food diet is working for you and that your doctor is pleased. I've never heard of the Mediterranean Diet, but I'm going to look it up now. Best of Luck to you and I hope you continue to feel better!

Peace and Blessings
Namaste
Saysusie

scubagramplit
01-03-2010, 06:52 PM
Susie, the dr. said that the raw food and the mediteranian diet was basicly the same thing, It's a good thing I like salad:) haha there is more to the menu than that. I still have some headaches, I don't know if they will ever go away but I can learn to deal with that. God has a reason for everything I just thank God for his love. Jim.

Saysusie
01-04-2010, 12:48 PM
You know, after looking at the diet...I am pretty close to it already!! Like you, I LOVE salads..I love raw vegetables..I LOVE fresh fruit. However, I cannot give up my chicken and fish, but I do prepare them with no oils, no batter (grilled or baked only).

I don't think that I will ever get rid of my headaches either. However, I will take a headache over a migraine any day. So, I count my headaches as blessings (lol)

Take Care and I do hope that you keep feeling better!

Peace and Blessings
Namaste
Saysusie

scubagramplit
01-12-2010, 08:04 AM
Greetings all, I have been busy for a while, moving into a rental and parking the fifth wheel for a while, not to mention non stop at work. Any way I just wanted to give an update, I am half way through my third week on this diet and I am feeling very good, my wife made the comment the other day that it was nice to have me back, I haven't felt like this in a long time. I started my taper on my prednisone on sunday, from 20mg to 19 for two weeks and 1mg every two weeks, I pray that this works cause my rheumy has told me that if I can't get off the prednisone my next option is chemo:( don't want some of that. I am praying for the best. God bless all. JIm

Saysusie
01-12-2010, 08:00 PM
Wow! Still great news and I hope the tapering of the Prednisone works also. Keep up the good work and I am glad that it is also making your wife happy:cute:

Peace and Blessings
Namaste
Saysusie

lucky7
01-12-2010, 09:29 PM
I take DHEA EVERY morning (thats when our bodies NATURALLY release it) and i feel BETTER after taking my dose. It wont last all day BUT it makes a difference! I take 25mg and they say anyone 50 or over should up it to 50mg a day. So that will be my plan at 50 as well!!!! Give it a try, it cant hurt! WELL, I hope not anyways!!!

scubagramplit
01-22-2010, 11:24 PM
Just thought I would give an update, so far so good. I am currently at 19mg and will go down to 18mg this sunday for 2 weeks. I pray that all continues to go well. God bless, Jim.

Saysusie
01-23-2010, 11:23 AM
We are praying with you.....

Peace and Blessings
Namaste
Saysusie

scubagramplit
01-23-2010, 10:22 PM
Thanks susie, I ate my first vegie burger today, I am not sure about the bread but at least it was not plain white bread. I was surprised that it did taste pretty darn good with a salad on the side. I have dropped at least 20 lbs since being on this diet. Feels good to not have that big prednisone belly leading me around. I guess I will be trying some more different stuff as I get braver. God bless, Jim.

Saysusie
01-24-2010, 10:06 AM
Personally, I LOVE veggie burgers. By the time you put the lettuce, tomatoes, mustard, dairy-free mayonaise, etc. on it, you have a pretty darn good burger! I am glad that you enjoyed it and, wow, 20 pounds! Still, all good news!
Congratulations!!

Peace and Blessings
Namaste
Saysusie

magistramarla
01-24-2010, 02:42 PM
Jim,
As my kids are fond of pointing out, we've just adopted that California granola-crunching lifestyle! LOL!!!
Marla

scubagramplit
01-24-2010, 10:46 PM
Yeah:) I would never in a million years think that I would give up my meat diet but I have to say that I just keep feeling better every day. I was buzzing around the house today going crazy doing things, my wife said that I was ADD today. I started to do the dishes and the water preasure was way to low, it has been getting worse every day for the last two weeks, so I decided to check out the faucet, in the process of going out to the garage the light was burned out so I set out to change the light bulb and I couldn't get the new one screwed in so I tore that apart and I felt I needed the air compressor to blow out all the stuff that was in the fixture and I could also use the air to help blow out the water line going into the faucet but I couldn't find the nozzle that I needed, I also had some outdoor carpet rolled up in the garage that was a little wet from the move in the rain so I set the picknick taple up and draped the rug over it to dry, Cindy found the nozzle that I needed so I went back to work on the faucet, had a bunch of rust clogging it up so I took the faucet apart to clean it. I finally got the water working normal again so I took the air compressor back to the garage and oh yea, the light, so I finished that project, light is a wonderful thing, came back in and cleaned up all my tools and leaned back on the sink and asked my wife how long ago that I started the dishes, it had to be hours, the water was cold now. I told her that I wasn't ADD and that us men folk call it muti-tasking. We got quite a laugh out of that. So now I need to make lunch for the week so I pretty much empty the fridge of all the vegetable products and built myself a weeks worht of salad, RAW! Boy , it is 9:45 and I am still wound up. Well I've gotta go teach my students tomorrow so I hope you have a good laugh over this little blurb. Take care and God bless, Jim.

scubagramplit
01-24-2010, 11:19 PM
Saysusie or anyone else out there that might have some knowledge on this subject. I take vitamin supplemtents and have for a very long time, one of them is a B-complex and that has always made my urine a bright yellow color. My question is since I have been on this diet my urine has slowly lost that bright yellow color although it still has good color, would this be caused by the lack of meats? I do incorporate fish and see food into the diet but that is it. Just curious, any ideas would be appreciated. Thanks and God bless. Jim.

Saysusie
01-25-2010, 01:56 PM
I haven't been able to find much information linking red meats to urine color. However, what I did find was that the overall health of an individual can be seen in the urine color. So, if you feel that your health is improving due to your raw food diet, then it plausible that this will show up in the healthier color of your urine.

btw..you ADD post gave me the biggest belly laugh today!! That was hilarious!!

Peace and Blessings
Namaste
Saysusie

scubagramplit
01-25-2010, 10:28 PM
Ummm that was mutitasking not ADD:)

I haven't been able to find much information linking red meats to urine color. However, what I did find was that the overall health of an individual can be seen in the urine color. So, if you feel that your health is improving due to your raw food diet, then it plausible that this will show up in the healthier color of your urine.

btw..you ADD post gave me the biggest belly laugh today!! That was hilarious!!

Peace and Blessings
Namaste
Saysusie

scubagramplit
02-15-2010, 08:57 AM
Update, so far so good. I had a bit of a set back when I tapered to 17 mg. been there for two weeks now, at the start I went through some fatigue, felt awfully tired in the morning, perked up during the day and then dropped back down in the late afternoon. Seem to be doing a bit better now. Am supposed to go to 16mg today, not sure if I want to go to 16 of 161/2. I do not want to go back into bad flare mode. I guess the best thing is to go to the 16mg and pray for the best. I must say that I do still feel good as far as the diet is going. I have went from 220lbs + - to 189-193lbs. It feels good not to have that big pregnant lookin belly sticking out in front of me, darn prednisone. I am so hoping that I can get off the prednisone and not have to go on the chemo. My best to all and hope you all had a good valentines day. Jim.

magistramarla
02-15-2010, 01:33 PM
Hi Jim,
Good to see you here again. Congrats on losing all that weight. I'm sure that this alone will help you to feel better.
I've eaten healthy foods for years, and my weight never budges - still about 15 lbs. more that I would like. I just plain need to exercise, but my knees won't let me do much exercise.
Keep going on the steroid tapering - good luck.
Hugs,
Marla

Saysusie
02-15-2010, 07:51 PM
Congratulations on your weight loss, but I'm sorry to hear that you are dealing with a bit of fatigue. I know no one wants to up their Prednisone once they've started tapering and I hoping that you will not have to:no:

I referred to your previous post as "ADD" because you mentioned that your wife said you were being ADD that day!! I was not labeling you honest! :grumpy:.
Hope you do not have to up your Prednisone and that you continue to feel better!

Peace and Blessings
Namaste
Saysusie

scubagramplit
02-16-2010, 09:40 PM
I did not take it as being labeled, the whole conversation with my wife was funny and I was just trying to relay some of that funnyness. Please do not appologize, take it for the fun that I intended. Lord knows that we all need a good laugh once in a while, I was laughing when I wrote the respons:) I definetly felt better yesterday, went for a bike ride with my little girl, 51/2 miles one way, then my little critter called mom for a ride home while I still had to ride. wow words can't explain how good it felt to do something like that again, even if I have to pay for it later. Still feeling good today, just a bit tired this afternoon. Thanks for your support Susie and Marla and I hope your day was wonderfull! Jim.

Congratulations on your weight loss, but I'm sorry to hear that you are dealing with a bit of fatigue. I know no one wants to up their Prednisone once they've started tapering and I hoping that you will not have to:no:

I referred to your previous post as "ADD" because you mentioned that your wife said you were being ADD that day!! I was not labeling you honest! :grumpy:.
Hope you do not have to up your Prednisone and that you continue to feel better!

Peace and Blessings
Namaste
Saysusie

magistramarla
02-16-2010, 09:43 PM
I thought that the whole multi-tasking vs. ADD thing was kinda cute!

scubagramplit
02-16-2010, 09:59 PM
yeah we had a good laugh.

scubagramplit
04-28-2010, 07:43 AM
Well, I have been dreading writing this post as I had hoped it would have a more positive outcome. Although the raw food diet has made me feel a lot better and has done wonders reducing my wieght from the prednisone I just don't seem to be able to get below 15mg of prednisone. I made it down to 14mg and the fatigue came back. My new dr. had me go back up to 15mg but I believe the flare had already been started and then add some other stress on top of that I have been off work for the second day now due to the fatigue and back pain. My new dr. does not want to treat from another drs diagnosis so here I go again with all the tests. :| Yeehaa.