Does SS ever go into remission? I thought I read somewhere that it doesn't go into remission like RA does...is this true? It would be nice if it could give our bodies a break for a few weeks!
Hi :)
I think it's unusual for it to go into remission. However, I also think that mine did go into remission for about 5 years. For most people the most 'remission' they get is the time between 'flares'.
It's such a very individual disease. Some times are better than others though.
Take care - Scottie :)
Good question, and answer is I don't know. :-[
I haven't had the issues for long enough to know, I suppose. After 2 years of dealing with this, I can say I am doing as well as I feel I can for now.
Think I've finally found the right combo of drugs, ways to de-stress, and how to live my life to the fullest with limitations. We will just wait and see what the future holds. ;)
I had a friend of mine ask me a while back " aren't you in remission yet?". I was kind of having a bad day and that really hurt my feelings. Was not sure how to answer that so I just said " nope"
I would love to believe you can go into remission..... for about a month now my eyes are doing great, only have to put eye drops in a 3 to 4 times a day, I quit using Restassis and my mouth does not seem very dry anymore.
I was thinking maybe it is the weather or ??????? Somedays I even begin to wonder if I even have SJS . I do still have muscle/joint pain.
Or is this a dream ?
what is your weather like now? our summer has ended and it's getting cold and dry so I'm a bit worried it's going to be worse for me. the "fullness" in my hand is down....that seems to be affected by heat for sure. I'm happy for you and that gives me hope of some good weeks. Sometimes tho, I think the SJS just has migrated to a different area of our bodies when our eyes and mouth feel good!
For those of us with this fun disease there are times of the year that are worse.Summers just about kill me and I can't wait until winter and snow come. That is when I feel the best. Today in MN it is about 80 or above, beyond dry and need rain (it almost feels like Arizona it is so dry) and the wind is blowing the dust and corn and soybean dust from the fields. Sometimes it looks like a storm coming on the horizon and it the farmers taking out the crop.
Anyway, as far as remission goes, I have not read anything that leads me to believe that we will have remissions---at least the long ones that some people have.
I know that over the years I had times when I felt better, but I always seemed to have one thing or another and was going to the doctor. Sort of like the neuropathy then the arthritis, then the body aches, pain and flu like symptoms. Also, the lungs and the bronchitis from the thick mucus. Also, I had a lot of bladder stuff going on for years and that would almost do me in cause of theh pain and inability to get good sleep when I was working. I think I have had chronic sleep deprivation much of my life from one or another of these symptoms being active much of the time.
I guess I am just thankful for the times that things aren't as bad and you know if you brag about feeling so good today you will find that in an hour or two you do the dive and feel sick as a dog. Sjogrens really is a fickle disease. I guess if anyone would ask me if I had had a remission yet I would ask them to describe what a remission is cause I don't think it has happened to me for 40 years. Irish ;D
Quote from: Jellyb on October 09, 2011, 11:33:06 AM
I had a friend of mine ask me a while back " aren't you in remission yet?". I was kind of having a bad day and that really hurt my feelings. Was not sure how to answer that so I just said " nope"
Wow...
That's low. You handled it better than I would have. I'm afraid I would've opened mouth and inserted both feet. :-D
Thank Nara :-)
This is why I love this forum, you guys are all soooooo undwrstanding.
Irish, Im with you...I feel best in the winter...the warm seems to aggravate all my neuro issues just like MS. The allergans seem to make my whole body flare as well.
People dont understand that this most likely wont go into a remission, we have to deal with the not knowing of how we are going to feel
1 minute to the next. Its a nightmare for most of us. Ive been in a horrible flare for the last 5 years and cant seem to get out of it.
No one understands....because I dont have cancer etc. I wish I could get rid of this for at least awhile and get my life back again. I have hair
that prob wont grow back at all either.
Gursie
Quote from: gurs on October 10, 2011, 04:12:15 AM
People dont understand that this most likely wont go into a remission, we have to deal with the not knowing of how we are going to feel 1 minute to the next. Its a nightmare for most of us. .... No one understands because I dont have cancer etc. I wish I could get rid of this for at least awhile and get my life back again.Gursie
DITTO EVERYTHING YOU SAID HERE!!
What I don't understand is - why CAN'T it go into remission? I have read that too - that sjogrens doesn't go into remission. But why would that be? How is it THAT different from Lupus, MS, RA, etc? - which can all go into remission? Plus, for myself (and I think for a lot of us), we weren't born with this necessarily. For me, it kicked in MILDLY in my mid-late 20's (mildly, meaning I didn't even know I had it). It didn't kick in full force until after my second baby (this past year, early 30's). So my question is, what "turned it on"? And why the heck can't we find a way to turn it back off? I have to think - at the very least - that we can have periods of low activity, and be near remission. That's what I will tell myself, anyway, because I don't think I could drag myself out of bed every morning thinking otherwise.
Hi Lolo!
My sentiments exactly! Mine kicked in at post-menopause which they say is common however not sure if the gene was activated during menopause (I have read many articles about low hormones triggering the gene and I didn't take hormone supplements) OR did I really have this since my early 30's and it's taken 27 years to rear its ugly head!? Are you currently taking any drugs for your SS?
Jill
Mine started when I hit puberty, then, after my total hyster and menopause 5 years ago, just go so severe.
Ive read so many articles/books on this and some say low estrogen, some say High levels of estrogen? who the heck knows!!!
I def think its hormone related though...for sure!
Gursie
Mine kicked in at age 51 during a period of hormonal upheaval. I was very sick the first two years and gradually improved. I can't say remission but a definite sustained period of improvement and it can't all be attributed to treatment. Because I started treatment 6 months after symptoms began and it helped but I've definitely continued to improve since. Gastroparesis probably hampers my quality of life more than anything now.
Just want to offer some encouragement.
Anna
Mine has started slow and gets worse over time. Been 15 years since first symptoms. I'm hoping when/if I start treatment. That it stops the progression or maybe initiates a remission.
I figure if the disease can be started at the flick of the switch from say an infection. Then maybe a heavy dose of treatment could stop it.
So I just returned from my second appt with my new rheumy, and we talked about this. Her basic answer is that there just isn't as much known about sjogrens as RA and some of the other AI diseases, and a lot of sjogrens activity is more subjective rather than solely based on bloodwork. So it sounded to me like there just isn't enough data or published info to declare one way or another that sjogrens can go into remission.
I guess it makes sense, since we all have such different experiences with our bloodwork - what it shows, what it doesn't. There's not even a definitive, agreed upon test to unite us. Just symptoms. I venture to say that's the reason they can't really declare remissions. What clinical criteria would they base it on? It would be subjective.
In any event, we talked a lot about what causes it. And again, as we all know - there's no one answer. But she did say estrogen is "definitely" involved. I wonder if it is instigated by a sudden drop in hormones. It seems a lot of our members talk about menopause kickstarting things. And for me, mine really kicked in immediately following a miscarriage. I miscarried at 6 weeks, and literally a month later my dry mouth and dry eye problems started overnight. Then I got pregnant again, carried to term, and flared big time with nerve and joint issues 6 weeks after I gave birth. So i have to believe the sudden drop/change in hormones plays a role. Still trying to pull myself out of that flare, btw.
Jill/Gold55 - I think you asked if I was taking anything for the sjogrens...I am about 3 months into plaquenil and restasis both. My rheum also gave me a prescription for methotrexate, but I'm holding off on that until I can get through some upcoming work meetings I have to travel for. I'll have to add to my signature line. what about you?
What age does Sjogrens normally start? Maybe that could have something to do with it?
I'm male, and my first symptoms started when I was 15. I think it was started from Mono as one day I messed around with someone. And that night started my sleep problems that rapidly progressed into alot of other things that just grew worse with time. And years later I tested positive for Mono in that I had had it at some point in the past. So I guess I got the Mono when I had fooled around with that person on the day my first symptoms started.
Hi Jason :)
The youngest Sjoggie that's ever been in here (well her Mom was in) was actually 4. It seems to be able to start at any age.
Take care - Scottie :)
I don't think that menopause or estrogen "cause" it but I do think that there is some relationship to the increased symptoms.
I think that I could have had the Sjogrens when I was in high school. In my senior year I started having severe sweating spells and would get so hot that I got a abright read face. My dental cavities started early on also.
The one thing that happened for sure was that I had flares after the delivery of my children.
I also know now that I had a Sjogrens flare during my 2nd pregnancy that lasted the whole 9 months. Many organs involved and after delivery the weakness and aching started in big time. It is really hard to get a handle on this disease. Irish
we'll, being the fact that most women have autoimmune diseases, you would think hormones are somewhat involved. I think the hormone changes are what does it..seems that puberty, childbirth, menopause, etc seem to aggravate it..the hormonal flucuations. Sure viruses and toxins do it as well...we seem to have this faulty gene...
gursie
I'm another that feels hormones must play a part in some way. In the year after menopause was when my body went haywire.
It makes me wonder about my daughter, who is pregnant and whose 23rd birthday is today. She is extremely tired, but hope that is because she's ending her 1st trimester.
She's had some serious dental caries happening in the last year even though she takes care of her teeth, and dry skin issues. My hope is that none of these are related. It has recently crossed my mind that they could be, but will continue to hope that she never has the issues that I do.
Meld,
Happy birthday to your sweet daughter! I hope that her problems are not AI connected. At least the fatigue can be explained by her pregnancy.
Cheryl
It's definitely glandular-based for me. Mine kicked in a couple months after a car accident--someone turned left in front of me and I hit her at about 45 mph. My adrenaline went crazy for about 5 days...I was pretty sick although not injured in any way. 2 months later my life fell apart.
I've been off for a couple months but am glad to be back with you understanding people!
MB
jmkboyer,
Glad you're back! ;) Hope you're hanging in there well.
Cheryl,
Thanks for the birthday wishes for "my girl." I'll not put too much into the AI connectedness. Maybe her sleepy-tired phase will be over soon.
Won't bore people with a birthing story too much, but I'm up early like I was that Wed. 23 years ago. I was induced, didn't think it was working and at noon everything kicked in gear. She was born at 2:30 p.m. WOW, that was fast!
She's been quick and independent her whole life. From the time she could talk, her favorite words were "I want to do it" and "I do it myself!" I hope she has a child just like her, then Grandma/Grandpa can hand them back. ;D
what can one really do if it's a hormone issue....especially during pregnancy/delivery. Even if I would have known, who knows if I would have been given the right replacement therapy to avoid SS kicking in during/after menopause! I was glad when I lost hormones because it toned down my adult acne....little did I know that I was about to receive an even bigger "gift" >:(
Quote from: gold55 on October 09, 2011, 10:46:28 AM
Does SS ever go into remission? I thought I read somewhere that it doesn't go into remission like RA does...is this true? It would be nice if it could give our bodies a break for a few weeks!
Well I got mine to go into complete remission for 2.5 years and I was off all my medication.
It took a major change in my diet from the Standard American Diet to a truly healthy one. After reading The China Study by Dr. Colin Campbell (which I highly recommend everyone read)- where he discusses autoimmune disease etc. and how diet plays a role - I realized that I needed to make a change for my health. He mentioned many different doctors with similar diets and I found Dr. John McDougall's made the most sense for the way I like to eat (he has a website you can google - every time I put a link I get told I'm not allowed to put one in). He currently has research underway for his diet to put MS into remission with Oregon Health & Science University/medical school/neurology department. He also has published on RA etc. in peer reviewed medical journals. This isn't flaky, but based on science.
I was in terrible shape, about to go into a wheelchair because I couldn't walk more than a couple of feet, couldn't get up out of chairs, even my arms/muscles were inflamed - couldn't prepare meals, set a table or anything - too weak. I also had the typical litany of other diagnoses most have - fibromyalgia, OA, allergies, asthma, constant recurrent bronchitis, high blood pressure, high cholesterol etc. And OMG with in a few weeks to a few months I was feeling completely normal and off all medications except Vitamin B12. Even things I've had since a child - allergies - here I was hiking in the woods in rough terrain in the spring and fall during heavy pollen without any prescription allergy medication. No asthma, not even the daily coughing. Even my eyes got moist enough I was off Restasis except in the winter when house was dry from heat. My doctors couldn't believe the changes - they kept calling me a miracle - my PCP made changes to her diet and talks about it to her patients. Unfortunately my rheumy told me that he recognized that the changes in me were incredible and he's never seen anything like it before, but he enjoys the way he eats and he doesn't want to suggest to any of his patients to try changing their diet - Hey if you tried it for a month or two. Makes me sad knowing that a lot of our health issues are completely related to the food we eat.
Unfortunately I had to have extensive, 6 hours of aggressive surgery and it set me into a remission, back to my rheumy and back on Plaquenil and Restasis. I went from feeling completely normal to a mild flare for a couple of months. But that flare is finally going away. I'm at the point now where I'm considering staying on Plaquenil to avoid any future flare - after all I can't predict if I'm ever going to be in a terrible accident undergo incredible stress that could make me flare. Or do I go back off Plaquenil?
BTW, stuff I've suffered from since I was a child - OA, allergies, asthma etc. never came back in this flare and the only meds I'm on now is Plaquenil, Restasis and B12 and Thyroid meds.
I think everyone here should try doing this kind of diet for a month or two - serious, not cheating to see if it works for you.
I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.
But eating healthier is always a good thing.
Quote from: jasonsmith on October 12, 2011, 03:08:57 PM
I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.
But eating healthier is always a good thing.
I agree with you Jason - some one selling stuff always makes me put my guard up. The research is completely legit. All the information one needs to go on his diet is completely free on his website - and there is tons of information - all free. The best part is Jeff Novick's forum - Jeff is a nutritionist/registered dietician who is currently working with Whole Foods on their new Health Start Initiative. BTW, I do think his books are worth it - but you can borrow them from the library like I did. The one item I don't like is his instant soups - way too salty - he apparently sold that company a few years ago. Dr. McDougall is very passionate about diet affecting health - he recently had a project with Sacramento Food Bank & Family Service where he taught them and their clients to eat this way for free - same as his 10 day program that patients pay to attend. There are other doctors with similar programs - Dr. Joel Fuhrmann, Dr. Dean Ornish, Dr. Essylstyne, Dr. Pritikin etc. If you have heart disease, some health plans, including medicare will cover you to attend Dr. Ornish or Dr. Pritikin's lifestyle programs to learn their diets.
Quote from: Skylar on October 12, 2011, 05:09:45 PM
Quote from: jasonsmith on October 12, 2011, 03:08:57 PM
I hope that diet thing is real and that guy is serious in his research. As it looks like he sells a bunch of stuff. There are alot of good info out there. But I always find you have to watch out with regards to places that have information on health related things, but are also selling a bunch of stuff as well.
But eating healthier is always a good thing.
I agree with you Jason - some one selling stuff always makes me put my guard up. The research is completely legit. All the information one needs to go on his diet is completely free on his website - and there is tons of information - all free. The best part is Jeff Novick's forum - Jeff is a nutritionist/registered dietician who is currently working with Whole Foods on their new Health Start Initiative. BTW, I do think his books are worth it - but you can borrow them from the library like I did. The one item I don't like is his instant soups - way too salty - he apparently sold that company a few years ago. Dr. McDougall is very passionate about diet affecting health - he recently had a project with Sacramento Food Bank & Family Service where he taught them and their clients to eat this way for free - same as his 10 day program that patients pay to attend. There are other doctors with similar programs - Dr. Joel Fuhrmann, Dr. Dean Ornish, Dr. Essylstyne, Dr. Pritikin etc. If you have heart disease, some health plans, including medicare will cover you to attend Dr. Ornish or Dr. Pritikin's lifestyle programs to learn their diets.
I looked at his diet. But it looked pretty generic to me. i.e. eat fruits and vegetables and not eat bad stuff, etc. And also his diet is vegetarian diet by not eating meat.
I did notice he had not to eat milk and yogurt. But I've always heard those were good to eat. I try to eat yogurt some since I have chronic diarrhea and it is supposed to help replenish good bacteria.
Though, on his diet he gives receipes that have alot of cooking. Some I looked at were like 4 hours to cook a meal.
I plan on eating healthier but I can't do the long cooking. I'm going to look at eating fruits and vegetables and finding easy to cook healthy meals. I wonder if things like the Weight Watchers TV dinners are healthy?
What I'd like to find are healthy easy to cook meals at the local store.
I also think that the hormones are involved somehow, but I have to add that I was falling apart and had sjogrens symptoms long before I had my hysterectomy. I had a terrible flare with my 3rd pregnancy and had flares prior to that pregnancy.
That was back in the dark ages and nobody thought much about it though---just thought I had "nerve" problems. God Bless the docs who label all things they don't understand as nerves. Irish ;D
Quote from: jasonsmith on October 12, 2011, 06:54:54 PM
I looked at his diet. But it looked pretty generic to me. i.e. eat fruits and vegetables and not eat bad stuff, etc. And also his diet is vegetarian diet by not eating meat.
I did notice he had not to eat milk and yogurt. But I've always heard those were good to eat. I try to eat yogurt some since I have chronic diarrhea and it is supposed to help replenish good bacteria.
Though, on his diet he gives receipes that have alot of cooking. Some I looked at were like 4 hours to cook a meal.
I plan on eating healthier but I can't do the long cooking. I'm going to look at eating fruits and vegetables and finding easy to cook healthy meals. I wonder if things like the Weight Watchers TV dinners are healthy?
What I'd like to find are healthy easy to cook meals at the local store.
Yes, most of these doctors say no to dairy products, or limit them. Most people in the world can't digest milk beyond infancy (Asia, most of Africa and a surprising number of Europeans). Countries which historically had no dairy intake also historically had the lowest incidence of Osteopenia and Osteoporosis. There is one theory that milk proteins are involved in autoimmune diseases (and part of leaky gut theories too)- it's only one theory among many and no one really knows why we have AI so I mention it but don't a heavy stress on that because who knows what science will discover in the future about the cause of AI? The dairy industry has us all believing we need to eat a lot of dairy every day but the truth is that before WW2, many Americans didn't eat much dairy except for those living close to or on farms. Drinking milk became popular in the diet during WW2 when the US was looking for ways to feed soldiers- soldiers came back from war with a new habit to drink milk. If you want probiotics, yogurt only has one or two types of bacteria - you're better off with a live probiotic product that has a much wider range of bacteria more akin to what is in your digestive tract. And consider that dairy products might be one cause of your bowel troubles - you might have trouble digesting them. Also be careful taking probiotics - our bowels have carefully adjusted levels of bacteria - taking these products can throw off our system. Of course if you've taken antibiotics for a long time - killing off many of these bacteria, then you need to take them to help recoup a normal balance again.
I'm a lazy cook - if I can't prepare a meal in under 20 minutes, well I just look for another recipe. Jeff Novick has Snap meals as a sticky in his forum on Dr. McDougall's site which are meals that use a few ingredients, take about 5 minutes to put together and are so cheap that these were the recipes they taught to people depending on the food bank of Sacramento for their food. People on the site awhile back were seeing how cheap they could eat and were posting daily that their meals for the day were under $4 and even $3 - I spend a lot more because I like fancy fruit like mangos and honeycrisp apples and exotic veggies. What I have learned to to avoid things like Weight Watchers and all those commercially prepared foods. The best and healthiest foods are found in the produce aisle, generally don't come in boxes or bags and have simple list of ingredients with no chemical names. A bag of frozen mixed veggies and a bag of frozen brown rice is much healthier - just add your spices or a small amount of condiments to add flavor.
Quote from: confused on October 12, 2011, 07:56:56 PM
Are there any double blind studies on Dr. McDougall's diet showing what it can or can't do?
Yes the Multiple Sclerosis is a double blind study - and the other doctors I mentioned publish their work in peer reviewed medical journals that are highly regarded main-stream read by most Drs. in their respective field- I looked Dr. McDougall up in PubMed - he has articles in JAMA, Circulation, Mayo Clin Proc, Arch Intern Med for example.
I forgot to mention Dr. Neal Barnard if someone has type 2 diabetes
I do think hormones play a role, but I had many of my symptoms since I was a young child. Diet also plays a role with hormones - both the types and quantities of hormones we produce can be affected by diet.
Quote from: Skylar on October 13, 2011, 05:07:36 AM
I'm a lazy cook - if I can't prepare a meal in under 20 minutes, well I just look for another recipe. Jeff Novick has Snap meals as a sticky in his forum on Dr. McDougall's site which are meals that use a few ingredients, take about 5 minutes to put together and are so cheap that these were the recipes they taught to people depending on the food bank of Sacramento for their food. People on the site awhile back were seeing how cheap they could eat and were posting daily that their meals for the day were under $4 and even $3 - I spend a lot more because I like fancy fruit like mangos and honeycrisp apples and exotic veggies. What I have learned to to avoid things like Weight Watchers and all those commercially prepared foods. The best and healthiest foods are found in the produce aisle, generally don't come in boxes or bags and have simple list of ingredients with no chemical names. A bag of frozen mixed veggies and a bag of frozen brown rice is much healthier - just add your spices or a small amount of condiments to add flavor.
I hardly drink milk. About the only time is if I have a bowl of cereal once in a very long blue moon. I used to eat cereal alot many many years ago. But I don't really anymore.
Do you have a link for these Snap Meals? I'll look at it. Though, I'm really used to fast meals that need little to no preparation. The main thing for my meals were quick microwavable meals. Or stuff that you could grab and eat. Though, I know alot of those aren't good for you. I plan on eating more fruits and vegetables though. The good thing is those are fast and easy to eat.
But I have alot of fatigue. So, I'm doing pretty good just making toast or making a simple sandwich.
When in town, I'm used to getting fast food. But what I plan on doing if I'm in town and want/need to get something to eat. I'll probably get a subway.
Quote from: jasonsmith on October 13, 2011, 06:19:48 AM
I hardly drink milk. About the only time is if I have a bowl of cereal once in a very long blue moon. I used to eat cereal alot many many years ago. But I don't really anymore.
Do you have a link for these Snap Meals? I'll look at it. Though, I'm really used to fast meals that need little to no preparation. The main thing for my meals were quick microwavable meals. Or stuff that you could grab and eat. Though, I know alot of those aren't good for you. I plan on eating more fruits and vegetables though. The good thing is those are fast and easy to eat.
But I have alot of fatigue. So, I'm doing pretty good just making toast or making a simple sandwich.
When in town, I'm used to getting fast food. But what I plan on doing if I'm in town and want/need to get something to eat. I'll probably get a subway.
For fast food I like a baked potato and plain salad at Wendys but my favorite is Chipotle (black beans, lots of different salsas and lettuce salad). Subway is tricky and always a compromise since they have healthier but not truly healthy choices.
Okay, here are the links:(edited to remove direct links to the sales site, you will have to copy and paste, and they will lead to the forum part of the site, Linda)
drmcdougall.com/forums/viewtopic.php?t=10519 this is where Jeff describes the science/nutrients behind the meals - there is one recipe but he didn't suggest any spices - add what you like
drmcdougall.com/forums/viewtopic.php?t=7168 - these are the recipes. They really can be used as ideas on how to make what you like to eat quickly - so adapt them to your taste.
BTW, I never really knew if my fatigue was due to SS or fibromyalgia or what? But iI now have normal energy and sometimes too much LOL I don't miss it. Between the fatigue and all the swelling in my muscles making it hard to chop veggies or even to stand and work in the kitchen - I have to say changing my diet to eat this way was a real struggle for the first few days. I had to push through it to see the sunlight at the end of the tunnel. Unfortunately DH doesn't know how to cook beyond picking up take away at a restaurant. LOL
Quote from: Skylar on October 13, 2011, 07:12:57 AM
Quote from: jasonsmith on October 13, 2011, 06:19:48 AM
I hardly drink milk. About the only time is if I have a bowl of cereal once in a very long blue moon. I used to eat cereal alot many many years ago. But I don't really anymore.
Do you have a link for these Snap Meals? I'll look at it. Though, I'm really used to fast meals that need little to no preparation. The main thing for my meals were quick microwavable meals. Or stuff that you could grab and eat. Though, I know alot of those aren't good for you. I plan on eating more fruits and vegetables though. The good thing is those are fast and easy to eat.
But I have alot of fatigue. So, I'm doing pretty good just making toast or making a simple sandwich.
When in town, I'm used to getting fast food. But what I plan on doing if I'm in town and want/need to get something to eat. I'll probably get a subway.
For fast food I like a baked potato and plain salad at Wendys but my favorite is Chipotle (black beans, lots of different salsas and lettuce salad). Subway is tricky and always a compromise since they have healthier but not truly healthy choices.
Okay, here are the links: (edited to remove link to direct sales site)
drmcdougall /forums] this is where Jeff describes the science/nutrients behind the meals - there is one recipe but he didn't suggest any spices - add what you like
[url=http://www.drmcdougall.com/forums/viewtopic.php?t=7168]http://www.drmcdougall.com/forums/viewtopic.php?t=7168 (http://www.drmcdougall.com/forums/viewtopic.php?t=10519) - these are the recipes. They really can be used as ideas on how to make what you like to eat quickly - so adapt them to your taste.
BTW, I never really knew if my fatigue was due to SS or fibromyalgia or what? But iI now have normal energy and sometimes too much LOL I don't miss it. Between the fatigue and all the swelling in my muscles making it hard to chop veggies or even to stand and work in the kitchen - I have to say changing my diet to eat this way was a real struggle for the first few days. I had to push through it to see the sunlight at the end of the tunnel. Unfortunately DH doesn't know how to cook beyond picking up take away at a restaurant. LOL
Thanks. I'll check it out. I had been wanting to get off of drinking cokes. But every time I quit, I can't get to sleep. Strange. But I'm going to wean myself off instead of stopping cold turkey.
I had been wanting to eat healthiers for years. But one of the few things I've got left is enjoying bad food. But my recent blood test said I had real high triglycerides. So, that modivated me to cut out the fats and sugar and bad food in general. I figure if eating the right foods has a noticable benefit, it will probably take time since I've been eating bad stuff for decades.
I was drinking like 5 cokes a day. And now realized that one 12ounce coke has more sugar than you are supposed to have in one day. I'm lucky my glucose and cholesteral have always been good. But figure I need to change as I don't want to get diabetes, etc.
Good luck kicking the Coke habit. My daughter is addicted and drinks a ton too - she had to stop Coke for health reasons and had terrible withdrawal headaches from the caffeine - take care with this.
BTW, if you're drinking regular coke there is plenty of sucrose and high fructose corn syrup in there - Fructose can raise triglycerides as can simple carbohydrates - such as in processed foods like white bread, cookies etc.
Quote from: Skylar on October 13, 2011, 07:58:28 AM
Good luck kicking the Coke habit. My daughter is addicted and drinks a ton too - she had to stop Coke for health reasons and had terrible withdrawal headaches from the caffeine - take care with this.
BTW, if you're drinking regular coke there is plenty of sucrose and high fructose corn syrup in there - Fructose can raise triglycerides as can simple carbohydrates - such as in processed foods like white bread, cookies etc.
Yeah, I think it was the cokes giving me high triglycerides. But I had read one possible cause of high triglycerides is hypothyroidism. As my body temperature is always on the low side.
I used to drin a gallon of milk about every 2 days,, now I dont drink it al all, I cant get it down, and it just tears my stomach up,, anything salty,, forget it,, makes my mouth worse,, if thats possible,, i think next step is removal of paratoid glands,,
Quote from: jasonsmith on October 13, 2011, 08:13:15 AM
Yeah, I think it was the cokes giving me high triglycerides. But I had read one possible cause of high triglycerides is hypothyroidism. As my body temperature is always on the low side.
Yes hypothyroidism can raise it too - Have you been tested - I have Hashimoto's and it seems to be pretty common here?
Still in the hunt, I hope you are feeling better soon.
Quote from: Skylar on October 13, 2011, 08:34:23 AM
Quote from: jasonsmith on October 13, 2011, 08:13:15 AM
Yeah, I think it was the cokes giving me high triglycerides. But I had read one possible cause of high triglycerides is hypothyroidism. As my body temperature is always on the low side.
Yes hypothyroidism can raise it too - Have you been tested - I have Hashimoto's and it seems to be pretty common here?
Still in the hunt, I hope you are feeling better soon.
I believe my thyroid stuff came up normal. There was a doc who did prescribe some thryoid medication like I was hypothyroid because of my low body temp. It was a starter pack. Where you take a small dose. Then in the morning, take your temp. Then keep increasing the dose until your morning body temp is where it is supposed to be. I forget what temp. Then you figure out what your dosage is.
But I think that thyroid stuff was increasing my heart rate, and I think it was giving me sleep problems. So, I never finished the starter pack to get a prescription.
I fully believe I have secondary Sjogren's brought on by PCOS which has something to do with insulin affecting my hormone levels. I think that the link has not been proven medically yet but it is waiting to be. In my particular case everything presented together with PCOS first and the Sjogren's was the loud ringing bell which finally got me help for everything.
I have no doubt it is totally linked to hormones, insulin and something else I am not sure of. You could not convince me otherwise.
Quote from: confused on October 13, 2011, 08:55:49 AM
Hi,
I can only find that is supposed to be a double bind study on the diet for MS but I cannot find the study or the results.
Has this study been started?
If it has been completed where do I look for the results?
Luckily I have an apt with my Rhuemy later this month so he should be able to help me more on this issue, but in the meantime I just can't pull anything but there is supposed to be a study. My computer skills are not always the best so it could just me.
confused, there is nothing published yet. It's been ongoing for a year or two and will take another year or two before all the patients enrolled and then they need time to be on the diet (or not on the diet as the control). They may publish preliminary results when they have some - but I haven't seen anything from this yet. I'm interested in it too because I was Dx with MS for quite a few years before they changed it to SS. Here is some info: http://www.ohsu.edu/xd/about/news_events/news/2009/studyoflowfatdietandms.cfm This article also mentions Dr. Roy Swank who started this kind of work in the 1950's.
Quote from: confused on October 13, 2011, 09:25:34 AM
I won't be convinced unless I see the results of the double blind study from Oregon Health Sciences or somewhere as good.
Too many things come out touted as something that is supposed good to be for you, and then later, after a study you find out it is bad or usless.
Thanks
I agree, many things turn out to be different. He did a smaller study - not double blinded - rather single-blinded and for a very short duration on rheumatoid arthritis. These studies are extremely expensive and there are no drug companies to fund this kind of research - in fact no company will fund this because there is no money to be made telling people to eat fruits and vegetable from the produce department- so most of this is funded with his own money.
http://www.ncbi.nlm.nih.gov/pubmed/11890437 Of course there is tons of research on heart disease, type 2 diabetes etc. by the doctors I mentioned but no one else was, unfortunately concerned with autoimmune disease to study it.
I have to agree that diet can make a big difference in how one feels. However, I feel not every diet works for everyone. Dr. McDougal cuts out all fat and all animal protein and Paleo diet cuts out all grains and legumes, including dairy. I have heard arguments for them both working against Auto Immune disease and yet both diets are drastically different. I think if everyone is to stay away from refined sugar, processed foods and eat wholesome foods such as nuts, seeds, fruits, veggies, grass-fed beef, free-range chicken and eggs, we are feeding our bodies what it needs to properly function. Yes, there are foods out there that are inflammatory to the body and should be avoided such as the dark shade vegetables. But, some people can handle these, even with auto-immune disease.
There is always going to be a study showing this or that for diets. I feel people need to eat what is best for them, what makes them feel good. For some it'll be Dr. McDougal's vegan diet, for other's, it'll be the Paleo Diet.
I also think B12 can and does play a role in nerve type diseases such as MS. However, I don't believe it's the cure all. My Dr's were shocked to find my B12 numbers are completely normal yet I have Autonomic Neuropathy. B12 isn't the answer for everyone unfortunately. For those that are low in it, or even vitamin D, supplementing can help. I'm just on guard with people saying that B12 can help everyone. I don't feel it's the case.
As with food, it helps on an individual basis. Each and everyone of us is so uniquely made, what may help one, may not help the other. I think it's great when people post what has helped them, it gives people hope it can help them too, I just think we need to remember we're all individuals, and so are the diets.
Gursie,
My onset was like yours----started at puberty, went into high gear at menopause. I believe hormones played a part for me, as does a family history of autoimmune illness.
I really think hormones played a big part for me. While I have never been the healthiest person, my first symptoms of SS came just 4 years ago at age 58. Dry mouth and what ended up being gastroparesis. I had been on hormone replacement therapy since around age 50. When all the hype about hormones and heart disease/cancer came up, I stopped them. I had been on them about 7 years.
The SS symptoms came less then one year after stopping prempro! Coincidence?
Here is a link to a Sjoggie's blog who uses diet to help her feel better: www.riversbridgesandwoods.blogspot.com
Rose G,
I do strongly believe and have read that a drop in hormones "triggers" the predisposed gene......I was diagnosed at age 56 yet I can remember symptoms from age 49 and I went through menopause from age 41-50. As my doc says "you've probably had the disease your entire life".....but it never reared its ugly head until you were finishing menopause! My Mom has AI so I'm sure I've been blessed with several of the genes....I only hope that the Sjogrens gene is the only one that has been triggered for the remainder of my life .... although I know I'm a prime target for RA at some point!
I strongly believe hormones play a part, too.
When I look back, as a child I had every sinus-throat related sickness that came along. I was usually strong and healthy, but I seemed to pick up every "bug." I had mono in high school that put me on the couch for 2 months.
After that, I went along great for years and years, so I feel very lucky for that.
I feel stress and hormones may work together. In the time I was going through menopause, we lost 6 family members, including my mother, FIL and 1st grandchild. My husband lost his job, we moved to a new state, and I began a stressful job. I think all that couldn't have helped.
Wouldn't it be wonderful if research can ever find genes that predispose us to these problems before they rear their ugly heads? I think that's a pipe-dream in my lifetime, but nice to think it might happen someday.