The today show this morning | Arthritis Information

 

My daughter called me this morning to tell me that someone on the Today Show put their RA in remission simply by exercising and eating a proper diet. This automatically put me into a defensive mood and I told her that it might work for some, but not for the majority of us. I also told her that if it was that easy that everyone would do it.
How would you respond to her?  I may send your answers to her to read.
I wish I had seen that, I wonder if they have info on there website about it.If someone had mild RA, then they might accomplish that. But those of us with serious autoimmune diseases, it is not enough. Look at how many of us must resort to MTX along with one of the biologics and Pred. I try to eat healthy and exercise on top of all the medications that I take and still it is not under control. Still the doctors are frustrated because they are running out of options to help me.

It is irresponsible reporting on the behalf of the Today Show to do a story that is the exception and not the experience of most RA sufferers. If this treatment was the answer for patients with RA, don't you think that our Rheumatologists would be sending us to Dieticians and exercise specialists. Mine does send me to Physical Therapists but I cannot do bicycling, running, even going for long walks. Those actions are impossible for me and have been now for a long time.

It seems that the only storys or media attention we see any more is the quick relief of Alieve, Remicade riding bicycles, etc. You don't see stories of people watching their limbs and joints cripple up on them, losing their jobs, their homes, their families. Because no one wants to admit that these things can happen. Because RA can happen to anyone since we still don't know the underlying trigger for RA.


http://video.msn.com/v/us/msnbc.htm?g=92d91f21-a573-49d3-95f d-cca7db4d7e6e&f=05&fg=rss Okay, I'm trying to find that particular story. Can you help me? All I got was the one on high cholestrol and a link to a book on arthritis diets.

Deanna, If you click on Buckeye's link for MSN.com, it will take you right to the video of the story.

Of course there is a short commercial first.

Buckeye, thanks so much for posting the link.

Nini

on the other hand,  Deanna,  losing homes and families is not the norm for people with RA either

buckeye39182.4697453704

A healthy lifestyle can't always prevent or rectify a health issue. Personally, I have been a health and fitness buff for over 10 years. I'm talking no junk food, strict diet including high quality protein, complex carbs, moderate good fats from flax and fish, very little to no dairy...the works. On top of that I work outed out with weights (3) times per week and I did 30 - 45 minutes of cardio per day (5) days per week. People around me who have known me for years are giving me crap and getting digs in because even though I am the deemed "posterchild" for health and fitness I still developed R.A. They keep saying "See look at all the time you wasted with that health crap and still got sick, maybe if you were like us (sedentary and ate like crap) you would have turned out ok...lol. Like you said, health and fitness may work for some...but it doesn't work for everyone and it definately isn't guaranteed to prevent disease. I'm living proof of that.

The show should have done some research and also added people to the show who lived the health and fitness lifestyle 100% and still contracted the disease. That way viewers could see both sides of the spectrum. It was definately misleading to viewers. Since developing RA I've had to seriously cut back on my fitness regimine. I still follow a good diet, but due to pain and fatigue I just can't go at it like I used to.

Ta2d39182.4792592593She was a 20 something who had JRA and after a binge weekend of eating greasy processed food went into a flare. She put 2 and 2 together and went on an elimination diet. I wasn't paying that close attention, but then their regular dietician went into a discussion of food groups to avoid and then I really wasn't paying attention because I didn't hear them say anybody went into remission. I'd tell my daughter I appreciate your concern and please bring me any new ideas when you hear them, but if it were as simple as contolling what we eat there wouldn't be so many people out here suffering needlessly. My MIL sent me an expensive set of magnets I was supposed to strap to my body, thanks, but no thanks, my mom sent me bottles of Glucosamin Condrohton and Echinicia so I'd stop catching colds, thanks, but no thanks. My dr. cares deeply about my suffering and I know he is not keeping some miracle cure from me.
DeidreI think everyone should write to the Today Show and let them know we appreciate them shining the light on RA, but we would like a more complete look at the impact of this disease and it's effect on those afflicted.  This is Arthritis Awareness Week, isn't it - I think I read that somewhere.  Let's push them to really promote awareness!

Here is the link.

http://www.msnbc.msn.com/id/18023958/

I too think it is irresponsible. I did not see a doctor explain how diet helped her. Just a very lucky person who is in remission.

Bee

Okay that sounds like *EVERY* diet book in existence. Or is it just me?
I scanned thru it quickly and it sounds like the same old info that we already know about and that someone is trying to promote a book or something.  This makes me furious!   Oh I "submitted my feedback"


I wonder if I'm going to get asked not to contact them anymore. Hahahaaha



I was less than nice.
I will go submit my feedback also.  Thanks for bringing this to light!!

I agree, this kind of publicity is less than helpful.

Could someone tell me where to give feedback?

crispy39182.5653356481The link in Bee Bee's post is the link for feedback.Ok, thanks

Okay, I sent my email -  Here's what I said:

"The content of your show has reached the journalistic integrity of a woman's fashion magazine."

...........BURN!!!


Completely agree with your responses but would like to add for newbies there are a SMALL number of people with
RA who do respond to diet. I think (this is just a guess) that those people have food allergies and once the allergies are removed that helps.   I have mentioned before a book by a rheumatologist Dr Gail Darlington at Epsom General Hospital in UK who did research and wrote a book on RA&
Diet - she did a lot of research and concluded that 1/3rd of RA can be cured by diet.
I do agree that the tv channel that insinuated everyone can be cured by diet is irresponsible and just adds to the 'you could get better if you really wanted to' attitude we so often get so glad you all told the TV channel people how it is for the majority of RA sufferers.
Hope they take note.
Thanks for posting this; I will definitely go add my two cents.  Hillhoney, your email was excellent.I kinda saw this as I was getting ready to go to work this morning.  I know I missed some of it but it thought it was aimed at arthritis rather than RA.  It did make some references to RA in what I had just read and I thought it said some of the foods might help ease arthritis and some might actually cause it to become worse. I have head before certain foods are better for you if you have RA--even a brochure from the Arthritis Foundation but I have not experienced any miracle cures from any food.  They really do need to do a special on RA to inform the public what it is.  Until I was diagnosed with it, I hadn't a clue there were different types of arthritis.

Well, I beg to differ.  It seems to me if well known and respected research says that 70% or more of autoimmune diseases start in the gut then not only did what they said make sense, it is a valuable tool in managing these diseases.

What that JRA woman did was a long process.  She went on an elimination diet - basically she took everything out and slowly added things back in until she developed a flare.  You'll notice on reviewing the segment they were out of time and racing to get as much info into the time remaining.  I considered the segment neither condescending nor did I think they implied that if we just changed our diets our lives might improve. 

But I do believe - as an AI sufferer - that if we change our diets our quality of life will improve. 

Back to the 70% or more of AI diseases start in the gut.  That means we probably have hyperpermeable gut linings - and that means little microscopic particles escape our intestines and get into our blood stream.  When I first became ill I tried the gluten free diet.  This is a tough one as gluten is in just about everything - including hair spray and lipstick.  Luckily I was not gluten sensitive.  But over time I have come to realize that the culprit for me is yeast and that means a complete dietary change for a few years (along with medications) in order to 'heal the gut'. 

This is not a 'I'll eat more healthy' thing - this is a complete change of lifestyle and don't-screw-up-and-have-one-Big-Mac lifestyle.  Most people are not willing to do that to get their lives and their diseases under control.

Than woman on the Today Show was.

She should be applauded.

Pip

Right, so then how did I get it at barely 18 months old? I wasn't exactly pounding down the cheeseburgers - my mother was VERY conscious of what I ate. What did I eat that started it? FORMULA?!?! Seriously. I'm not thinkin' so.

But that's just MY opinion.

But what would mine be, because I was born with mine?

I have never noticed a difference in my RA symptoms because of something I have eaten. I do notice differences whent he weather changes, and when I have over-done and when I am taking my meds. I have took all the supplements that are suppose to help you and even the expensive ones, but nothing helps me. Calcium will help with wierd pains I get in my hips, and the use of pred... that is the only thing I do notice in helping me.

I am not trying to start anything, just asking a question.

 

Hey Katie! You posted what I was thinking, about the formula. Hey maybe if we were breast fed that would answer a lot of questions? I guess we might be the exception to the rule

I am not ganging up on anyone. I was making my reply when, Katie posted. Just trying to clear the air before *drama music plays* someone thought we were ganging up on someone.

You probably have a hyperpermeable gut caused by allergies to certain foods.  Probably wheat based.  Take a look at the back of your upper arms from your elbow to your shoulder.  Run your hand up and down.  Any pink spots that look like acne - but aren't?  Bumps?  That's food allergies. 

And in case you doubt my understanding of this situation - my baby developed vitilgo at 1 year of age caused proably by the same food allergies.  Even tho, since my husband and I had food allergies, we delayed solid food until she was well over 6 months old.  She now has a much greater chance of thyroid disease, Type 1 diabetes, and a host of all the other AI diseases - including scleroderma which is another mycoplasmic skin disease - a FATAL one.

It was common 20 to 30 years ago to start babies on solid food at 6 weeks of age.  Recently the baby books advise against that - it seems the kids started that early developed a host of food allergies.  Hmmmm.  Ask your mother what she did with you?

I am assuming you are upset at somebody else to take such a tone with me - please refrain from doing so in the future.

Pip

I personally do not believe it is diet that is a cure all for RA.  Only thing diet is a cure all for is being overweight.  It is difficult for a lot of adults to make major lifestyle changes.  We make one with RA already.  And on top of it we have people that want us to change our lifestyle again for a diet that most people know nothing about and where to start.  One lifestyle change at a time please!!!  It takes some people longer to get used to the RA lifestyle change.  After that, then maybe a diet lifestyle change will come. 

My 12 year old daughter is a vegetarian and only eats healthy stuff.  She is also athletic.  But we think she *might* have RA.  We go to doc Thursday to start the process.  I do not think changing her diet will cure her. Her diet is awesome to begin with.  And she does this in a house where there are chips, chocolate, etc.  She just makes the choice not to eat certain things and I applaud her for that.  Katie and June are correct.  One developed this as a very young child.  One was born with it.  What in their diet caused this???  Oh and btw, my daughter was nursed...never had a drop of formula in her LIFE.  So it isn't formula that has caused this. 

Everyone should eat a healthy diet.  It's just common sense since it does help you to live longer and prevent (not cure) other diseases such as hypertension, heart disease, and cancer. 

There is no cure for RA.  No magic diet, no magic juice, no magic pill, no magic shot, no magic wand.  Our best hope is a long lasting remission. 

That woman on the Today Show needs to be educated to some realities.  When she understands those realties and accepts those realties, then I will applaud her. 

No, nothing wrong with my arms. The only food allergy I have is dairy, and it's not even an allergy, my tummy just doesn't do lactose. :)

My mom did NOT start feeding me solid food that early - nor do I believe she'd heard of anyone doing that. I recall my GRANDMOTHER talking about waiting to feed her kids baby food until they were almost 8 months old. Not sure where you got that info from. I was an infant care provider for 3 years, I know very well how babies are fed, what you're "supposed" to do, and what people USED to do.

If food allergies run in your family, then you have pin pointed something for you, but not for everyone. I'm glad that you have, you're very lucky.

I took no specific tone, but please refrain from telling me what to do. I do no such thing to you.
[QUOTE=Deanna] If someone had mild RA, then they might accomplish
that. But those of us with serious autoimmune diseases, it is not enough
[/QUOTE]


Wait a minute here. Mild RA is all of a sudden not a serious autoimmune
disease? Huh? I'm not sure what you are saying here. I have to work 36
hours a week at the bedside, on my feet, all day with mild to moderate
RA, seropositive I might add. I do not have the luxury of being able to
stay home on disibility. I'm ruining my joints at a much faster pace
because I cannot rest them like I should. I have to watch my diet and
choose a healthy lifestyle and I feel that my healthy diet is the main
reason I ONLY have mild to moderate RA. It is also the reason I am ONLY
on Plaquinil. I'm really offended here. My RA is serious..to me....please
rethink your position here.

Actually Grandmaskittles - under infectious theory - you gave the infection to your daughter - just like I gave mine to my daughter.

And that's a hard thing to accept.

Pip

Still doesn't explain people like me and Joonie. No one gave us ours.


And how did she give it to her daughter?? Do explain that please.
Another point I would like to bring up here and it is a topic that many of us
do not think about is....how much make up, lotion, nair, nail polish,
underarm antipersperant, hair dye, sun tan lotion, etc, etc, etc are you all
applying to your bodies? Have any of you thought of this. The skin is our
largest organ and it absorbs these chemicals rapidly and poisons quickly. If
you can't eat it, don't wear it and if you can't read it, don't eat it. Any
comments?I use shampoo and conditioner, face wash, and deodorant. Ocassionaly I do a quick sweep of makeup, but it never lasts long. That's really it.

Katie -

Normally I really like you - what the heck is up with you today?

How do you get a cold?  How do you get a virus?  You've worked with kids - one bacterial infection and they all get them.

I have a mycoplasmic infection.  You may choose to think your body is randomly deciding to attack itself for no apparent reason.  Fine.  I do not.  I know mine was started by a infection. 

I probably was exposed to the RA myco's when I was tending my husbands aunt during her final days with RA.  I would put cream on her open bed sores.  61% of the general population has mycoplasmic infections but in certain AI diseases (RA for example) the number goes up to almost 100%.  I picked up the myco's and passed it on to my daughter.

Which may explain why AI diseases are not hereditary by nature - but we see people who live together getting AI diseases.  The name of your AI disease is irrelevent in this case - it's just what gene kicked on.  My daugher has the gene for RA - I did not.

Pip

P.S.  And lactose intolerant means food allergy - that upset tummy - means you have a hyperpermeable gut lining.  Every time you eat/drink something and it passes thru the intestines into your bloodstream - enough gets thru and 'flare'!  You want to control your disease without drugs - cut ALL milk products and whey etc. and see me in 2 weeks.  Tell me then you can't effect your disease by what you eat.

Lorster!

Comments - fabulous!

Pip

There have been cluster studies done. It could be environmental also. Some people that have lived in the same areas have more autoimmune diseases. My best friend I grew up with has Hashimotos (sp?), her sister has Lupus, my brother has Juvenile diabetes since he was 2 and I have several autoimmune dieases. That is just two families in 6the area I grew up in. My friends mom said they have been doing studies on the areas. We lived near some of the wooded areas that had the missile silos during the Bay of Pigs crisis in the early 60s, plus on the ocean where Proctor & Gamble pumped out all the soapy sooty smells. A few years ago I use to research it on the net, but haven't lately.

Lorster,

I totally agree that your heathly diet is what is keeping you going. I finally got to stop work a year ago, what a blessing. I was hurting myself, just like you are. Keep up the good work with your diet, I think it is very hard to eat right!!!

Daisy, eating right is probably the most difficult part of our lives. There
is food literally every where we turn and if we can't see it, we can smell it.
My husband and I went to Boston two weeks ago and walked into Fanuel
(sp?) hall and man, I could not believe it. I wanted to try everything in
that place. It was overwhelming. But so unhealthy and so I declined.
Went to Little Italy and had a nice lunch, more healthy but not as fun. But
what many people consider a healthy diet, others consider unhealthy.
You have to really get down to the basics, whole food. And then really
listen to your body. I do not feel that dairy is good for us, but I
absolutely love dairy. My body hates it. I believe that the GI system is
our center and if it is disrupted, so is the rest of us. Many doctors will tell
you that. People eat crappy. There are children who have never eatin
home made anything. That is what we have to do, everything from
scratch. There are too many bad ingredients in packaged foods. There is
a reason that every person in America is on a stomach med. I know that
nutrition is not the only reason for my RA, but I do believe that eating
whole foods and cooking from scratch, does make me feel better and
function better. And if anyone has a good recipe for ranch dressing, I
would love to have it, lol.

No, I do not have those bumps you speak of. Both of my sisters do and one of my brothers. I have a different daddy then all of them though, and RA is on my daddy's side of the family.

Oh and there was no tone taken with you. I ask that question to everyone I see who posts about diet being the cure for RA. Because I am still trying to figure this JRA stuff out and would love to be back in remission. I do not want to be like I am now and not be able to play with my 2 year old son like a normal mommy should be able to and for him to the childhood memory of his mommy carrying around an BIG 500 count IBU bottle everywhere she goes.

I was just asking a question... see I knew it would get took the wrong way... as always. US JRA'er's would like to know why we have what we have because we did not fall ill with it we were born with it.

Lorster,

I agree completely. I wish I could make myself eat better!!! I use to eat well and exercise and I know it helped , it was aleways the timesI felt the best. Aww!! You went to Boston, I grew up on the south shore there, I haven't been back in sooo long

I remember someone post you are what you eat. and I wanted to reply and not sound like a jackass, but I was going to reply "I eat nothing. so I should have nothing wrong with me. right?"

It is true. I eat once a day if that. I drink water and cranberry juice. I do not eat much anymore because most times I am not hungry and when I am hungry I cannot eat what I am craving, so I just do not eat and fill myself up with water and juice. Or when hubby comes home I sleep my hunger away and do that on the weekends.

I do take multi-vitamins and extra calcium on a daily basis, and that is about it. I do not drink milk or eat bread much. I am just trying to figure this out like everyone else.

Joonie, you can't just eat once a day and then fill the rest of the time with
juice and water. You must keep your body nourished all day, lots of small
meals throughout the day. Eating once a day is actually devastating to your
health and disease. You don't want to give this monster any satisfaction. If
you don't have an appetite, eat nuts and fruit and whole grains and then get
lots of veggies and lean protein in at meals. You must eat. Not eating is as
bad as eating too much.

I know, but this decrease in pred, makes me not want to eat. I often forget to eat. *shrugs shoulders*  I eat alot when I am on 10mg of pred, but being on 5mg makes me not hungry. I usually make myself eat, but the last couple of weeks I have not been feeling or doing so well, and just do not feel like eating. I will take a bite here or there of son's food when I feed him. Then I also have cravings for food I want to eat, but cannot find pre-made, like red potatoes out of pot roast and lasanga.

I have heartburn now from eating mashed potatoes, too much pepper I think.

 

I don't think what you eat causes RA. There are 3 diseases that have been in my family for generations, and they are diabetes, RA & Crohns. I used to tell the doctors that there was a genetic link involved in Crohns. When you have a 3rd cousin whose last contact with your family was 150 years ago, and he has Crohns and so do most of the people in your family, it's not coincidence. They're not laughing now. It's accepted science.

People have had RA in my family for about the same amount of time. It's genetic. Now, what TRIGGERS the gene? Could be a virus. Could be age. Could be two defective genes (which is why babies get it). But it's not what you eat. Just as autism isn't caused by frigid mothers. Those are quacks yakking because they don't have an answer.

I promise you that my great-grandmother wasn't wearing makeup or eating fried food or lots of sugar. Neither was my great-grandfather, and he was type 1 diabetic.

The only thing that triggers a flare in me is not getting enough sleep. I think sleep is critical to feeling well. People are sicker in general because we don't get enough sleep. Used to be that when it got dark, you went to sleep. How many of us have to take sleeping pills to get through the night. And, when you don't get enough sleep, and you go into a flare, you can't sleep because you hurt so much. It's a vicious cycle.

I have moderate RA, and when I get enough sleep, it usually sleeps, too. And when I don't, it cripples me.

I don't think a virus caused my RA or my oldest daughters or possibly my youngest daughter.  And Pip...some compassion please.  I am really struggling right now with this and my baby (shes really 12 but my BABY) is too.  I have enough guilt that I passed this dang gene down to her that I really do not need someone else saying or implying that it is my fault and I did something to either one of my daughters to cause this.  Your post saying that in theory I gave her a virus to cause this made me cry.  My belief is not in the infectious theory it is in the gene theory.  Any way my oldest daughter developed RA or my baby might have developed RA is difficult to accept.  My children are my life and to think I may have caused this to happen to them is enough for me to want to be a lemming and throw myself off a cliff. 

I am not trying to start anything at all.  I am just posting how I feel and really trying my best to be nice about it.   But I was upset and I did cry.  I need support right now...not people telling me I caused this.  I already know that.  Please I am just asking for help in accepting that and working thru that. 

I do not wear make up at all.  Not even to doc appointments lol.  I have to be going somewhere very special to put it on.  I use a scent free lotion.  Lubriderm as a matter of fact.  It is great for my tattoos.  I use a scented deoderant because quite frankly with 2 teens in the house I can't afford to buy everyone their own seperate deoderant and give in to their demands that they want their pits to smell pretty lol.  No perfumes for me either.  I have asthma and it bugs out my asthma.  Scented soap in the shower tho.  And scented shampoo because my fav one comes scented.  I am picky about shampoo and conditioner since I have a ton of long hair.  Altho it is thinning from the MTX. 

There are so many theories out there on what causes RA and no real definitive answer.  Which is why we need more research.  And more funds for research. 

[QUOTE=Ta2d]

A healthy lifestyle can't always prevent or rectify a health issue. Personally, I have been a health and fitness buff for over 10 years. I'm talking no junk food, strict diet including high quality protein, complex carbs, moderate good fats from flax and fish, very little to no dairy...the works. On top of that I work outed out with weights (3) times per week and I did 30 - 45 minutes of cardio per day (5) days per week. People around me who have known me for years are giving me crap and getting digs in because even though I am the deemed "posterchild" for health and fitness I still developed R.A. They keep saying "See look at all the time you wasted with that health crap and still got sick, maybe if you were like us (sedentary and ate like crap) you would have turned out ok...lol. Like you said, health and fitness may work for some...but it doesn't work for everyone and it definately isn't guaranteed to prevent disease. I'm living proof of that.

The show should have done some research and also added people to the show who lived the health and fitness lifestyle 100% and still contracted the disease. That way viewers could see both sides of the spectrum. It was definately misleading to viewers. Since developing RA I've had to seriously cut back on my fitness regimine. I still follow a good diet, but due to pain and fatigue I just can't go at it like I used to.

[/QUOTE]

 

All of the above...pretty much the same for me. I love working out, but now struggle with having the energy to do it, along with the rest of my schedule. I go home and just want to fall out on the couch due to fatigue and aches.

This whole discussion is very interesting. I know when all this started for me last summer, I was still breastfeeding my son (to this day I still feel SUPER guilty that the wacked rheumy I first saw strongarmed me into weaning...I will NEVER forgive myself for that....especially since my baby is having issues gaining weight, etc. but that is another story)

The infection theory IS a good one....and sometimes I wonder. I had a horrible PP period with my son, by the time he was 8wks old (which is when this all started) I had already had mastitis THREE times. Granted, I was pumping over 90 OUNCES (yes, 90!!) of milk a day ( I donated over 4k ounces to a family privatly) and being so tiny, I had to be VERY careful about it. With my daughter I had mastitis SO bad I ended up in the hospital for 4 days. But I never had joint pain after here. In fact, the year after she was born was the healthiest I had been since I was an athlete years ago! (I did get a little TOO skinny though)

I also had a VERY difficult pregnancy. I was sick the entire 35wks I was pregnant. We had to induce at 35 and 3 days because the baby hadn't gained any weight in nearly 3wks in utero. He was estimated at 5lbs at 33wks, and 5lbs again the morning I went in for a NST test (he wasn't as active as normal...I was worried), and he was 5lbs at birth! That was scary.

So it is possibly that the combination of a difficult pregnancy, an insane amout of milk production, 3 instances of mastitis in 8wks, COULD have caused all of this (if I DO indeed have RA...the jury is out....no damage, no swelling, no RA factor, just a crapload of pain, shooting and burning...and stiffness of course). But IF the infection theory is correct, how come the 3 times I have been on antibiotics since all this started has sent me into the WORST weeks of pain EVER. I was on antibiotics for a sinus infection about a month and a half ago, and ever since then the pain has been SO much worse. I didn't think it could get this bad!! Even with 15-20mgs of hydrocodone in me, I am at a 7-8 pain level constantly. It's awful.

As far as what my mother fed me as a baby. She couldn't breastfeed, back when I was born, it wasn't "the thing to do", so when she encountered difficulty, she wasn't encouraged to keep trying, the nurses at the hospital handed her a bottle and said formula was better anyway. (for my mom, this was heartbreaking. She was one of those "OMG, I'm pregnant, no tylenol, no cold meds, NOTHING." she had a 100% natural birth, and even refused an IV...signing a waiver. It was a HUGE scandal at the hospital where she delivered. THey all thought she was insane (this was when she had my sister...I was there...and decided right then and there I was NEVER having natural childbirth!!! NO way. Nearly 20yrs later I vividly remember her screams of pain.)

But back to feeding. She kept me on formula only for one year. Slowly introduced solids/cereals at 12 months, stretching to 18months. SLOW process. I wasn't put on whole milk until I was 2yrs old. My ONLY food "allergy" is seafood. It makes me wicked sick. It's not the iodine either (we found that one out by sheer accident...the anestiologist when I had my daughter screwed up and washed my back with Iodine...event though it was like ON THE BOARD in my room that I had a shellfish allergy!) I am also allergic to Penicillin, but I hear that is a common allergy. I don't know WHAT it does to me, as I'm not on speaking terms with my mother so I am unable to ask her, I just know I was always told to NOT take it. I found out last year that I am also allergic to Sulfa (by accident!), and some of the minicycline type antibiotics. But my allergies are more surrounded around medicine than anything else.

So, who knows. I was 24, nearly 25 when all this hit. I just found out a couple months ago that my great-grandmother on my Dad's side has RA, my Aunt was just diagnosed, I have two cousins that are under 20 that were diagnosed within the past year. All female's on my father's side. My grandmother doesn't have it...well, who knows, she could, but she's a quadrapalegic, and has been for over 50yrs. (polio...from a spoon that wasn't clean back in the 50's. I'm a nutcase about clean spoons!!!). Her big problem has always been brain tumors and caregivers who drop her. But she is my inspiration. I mean, I NEVER hear her complain. She was a gorgeous woman too back in the day.....quite the looker, and lost it all when she contracted Polio in her 20's. I can't even imagine. So I guess if I DO have RA, at least I can still walk (well, hobble) and have use of my hands.

I don't know, I think every theory has it's place. For me, AP therapy is out of the question, as the drugs used, I am allergic too. My RD is open to trying it though (he IS great, he doesn't push anything expensive on me...and apoplogizes when something from the pharmacy IS expensive, and then we work around it). I did ask him about the infection theory for me, especially since I had just finished a round of levaquin 2wks before all this started, but we decided since I have been on levaquin 5-6 times in the past, if this was drug-induced, it would have started after the FIRST round of levaquin. But, he wasn't opposed to the idea. However, he feels the infection theory is more in someone with high SED (I think?) rates, or a high RA factor, which I have NONE of those. He's even done the CCP (or whatever) test, and some that he wrote some collegues about, looking for another way to diagnose me. Shoot, my last RD visit, I was asked if it was okay (his nurse called me the day before) for him to bring in a 4-th yr resident in with him, to maybe get a "fresh" opinion. I think he's bringing in one of the other RD's in his practice when I see him next week. At this point he doesn't know WHAT I have, and because I have a preemie who is at risk for things like RSV< and cold/flu season here has been HORRID, he's really hesitant to just throw me on a biologic to "see what happens" not to mention it will cost me about 0 a month. So, I respect him for that.

But back to the diet thing. I did an elimination diet last fall. I've done them before, in an attempt to find a trigger for my migraines (this was 5yrs ago). It didn't matter what supplement I took, what special "juice" I drank, my pain was just as bad. So, I figure since I feel like crap 90% of the time, why should I refrain from induldging myself in my favorite comfort foods, gummy bears & pepperidge farm verona cookies. If I'm gonna feel like crap no matter what, I may as well cheer myself up with food!!

For the record....don't tell me weight has ANYTHING to do with it either. I'm a teeny tiny person. By the time Mrs Moo-Cow (me) had weaned in late November, I was down to 104lbs. (I'm nearly 5'5) So, even skinny people have joint pain!!! (I've had friends who I don't really know say "well, maybe you should lose your baby weight....umm, okay, yeah, maybe you need to see my pics...I lost the baby weight before I left the hospital...since I was so sick I didn't gain much). Of course the different meds I have been on, from prednisone to Celexa, I've put some weight back on. (OMG, Celexa...I gained nearly 15lbs the 2 months I was on that!!! NO more! two weeks and I've lost 5...at least I can wear my pants again). So, there blows THAT theory.

I have also been to PT, and made an attempt to work out before that. Ever since the 4wks of PT, I've been in a downward spiral. It sent me into such a state of pain, I spent two weekends in bed. I was simply SO stiff and in pain, I couldn't do anything but lay there and cry. I love to take the kids to the mall and walk around for 3-4hrs, but I'm usually down for the count for 1-2 days after, I'm in so much pain and stiff from all the walking around. And yes Katie and Liz....I don't wear heels to the mall anymore!!! Flats for me!

So, who knows. I do take supplements, but I Haven't noticed anything. BUt it doesn't hurt to give myself some extra supplements I"m sure. It kills me though, I have ALWAYS been an active person, and am a former competitive figure skater...so I can't even BEGIN to tell you how depressed it makes me feel to look at my medals, trophies, costumes and skates and think about the former glory. My daughter wants to go skating SO bad, and I simply don't have the energy to take her. It KILLS me. But both my husband and Iknow that I would probably be down for a couple days. I'm waiting until he has some time off to take her.

Shoot, even the warm weather we have been having hasn't helped!! The pain just keeps getting worse!! I am going to pain management this week, simply because my RD doesn't know what to do with me. All the tests are non-conclusive. I did have a bone scan last week, but having been a very active athlete, AND dancing on pointe, well, it's going to be a total crapshoot....I KNOW I have issues in certian spots....I've had stress fractures, cracked kneecaps, etc. SHould be interesting.

Just my thoughts. Sorry this is long.
I found an interesting article at the following website (Johns Hopkins Arthritis Center) - www.hopkins-arthritis.com/mngmnt/nutinra.htmlIn my case, there is a very strong genetic component. I don't really believe the whole infection theory, but if that what you think, it's okay by me. I have always eaten well and exercised. I tried the elimination diet and it made not one whiff of a difference in my RA. I liked Fiona's comments and I agree with most of what she said. There is a lot of faux science out there and it's only purpose is to seperate people from their money.   I have a co-worker who tried AP for almost 3 years, she suffered a lot of damage to her hands. Her AP doctor kept telling her to just be patient.   She now is on Enbrel and MTX. She has been doing very well for the last 4 years. People make choices about what treatment is best for them and sometimes there are consequences, whether they use tradtional treatments or others.


SarahThanks Cathy - that's a great article!What got under me is people like you who refuse to believe that there are multiple causes for something like this disease. I'm still waiting to hear how my mother would have passed it to me, seeing that she was healthy until a year ago. And no one in my family has it. Or anyone that we know.

I DON'T eat/drink anything with dairy, so that has NOTHING to do with it. I have GERD, and *probably* IBS, and thos "flares" have NO correlation with my RA flares.


If this food thing worked for you, THAT'S GREAT. But it *IS NOT* true for everyone.

By the way, I'm very offended that you made Liz cry. Outside of this forum she is a VERY VERY VERY wonderful friend to me, and I know that you don't know her like I do. I know that you only know here on here, and would never intentionally hurt someone - so I'm not mad or anything, I just want you to stop and think, that somewhere outside of this forum she is living a life just like you are, and try to imagine how you feel when someone hurts you. Just because what you said to her, may not have upset YOU if someone said it, doesn't mean it doesn't upset someone else. Did that make sense?


Okay I'm over this. Joonie seems to be the only one who understands where I'm coming from with this stuff, once again, another JRAer.

Yes, our world really is *THAT* much different from yours. Sorry, but that's the way it is.

Katie - Before joining the board in May of '05, I truly did not know what I had. And then after joining and reading I did realize mine was somewhat different then everyone elses on this board. I mean their expriences and how I could not really relate to some of the posts or how I could not really help them because I did not go thru what they went thru.

To a point I do feel really sorry for everyone on this board who just fell ill with RA. I can see how it has disrupted their lives and all. I kinda went thru that with this last bout of JRA, my life I had for 4-5 years was just snatched away from me and I was hit hard. So, to an extent I could relate, but not like others who have just fallen ill with it.

I have realized that, since I have JRA, that people with RA will not really understand what I go thru and how my life is tailored to having JRA. But I do appreciate the insight, support and friendship I receive from RA'er's. I just sometimes do not feel they understand what JRA'er's go thru. I know I am not to worse off in the JRA department, but to me I am worse than I was when I was a kid.

 

lorster, sorry but I didn't see your comment. I certainly didn't mean to imply that mild RA is not a tough go and from what you describe, I'd hardly say you have mild RA anyway. I definitely didn't want to insult or down play someone else's experience with RA. Even the mildest RA is a painful, debilitating illness. I just don't think that diet alone is going to do it for some people.

I quit reading this thread. But I do apologize. I had no intention to hurt any one's feelings or downplay what they go through. I'm sorry.

Joonie. Quit stealing my childhood.

 

 

LOL This is why I heart you so much!!! Actually, studies have shown that when people with RA fast they do a lot better. The only problem is as soon as they eat something their RA comes back to where it was before the fast. So there is some connection, but what is it? [QUOTE=Gimpy-a-gogo] Actually, studies have shown that when people
with RA fast they do a
lot better. The only problem is as soon as they eat something their RA
comes back to where it was before the fast. So there is some
connection, but what is it?
[/QUOTE]

What kind of a fast do you do? I would be interested intrying something. It
seems that everytime I drastically change my diet though, I feel sick and
have no energy. Fasting seems like it would be hard to do.

Can you fast if you are hypoglycemic?

Grammatskittles,

I apologize if I was abrupt and made you cry.  I assure you that was not my intention.  Unfortunately, I was upset by someone else and I let that cloud my thinking and my ability to communicate.  I could have found a much better way to say what I meant.  You are no more responsible for passing on a gene or an infection than I am - but - being mothers - we blame ourselves anyway.  Infections are just that - an infections.  Why does the flu kill so many elderly each year but leave so many others untouched?  If you or I brought a cold home; it's the same thing.  I am truly sorry for hurting you in any way. 

Daisy -

Interesting point on some of the environmental triggers.  I've read some posts on silica (sp?) in cat litter being a trigger as well as certain jobs having a higher correlation to AI diseases.  Whenever they study a cluster, they invariably come up with 'nothing is out of the ordinary'.  Hmmmm.  If I had to place a bet, I'd vote for P & G - there are a couple of known clusters around Dow chemical plants.

Lorster -

Loved the 'can't read it, don't eat it' advice.  If we can't recognize an ingredient, it ain't something we should be injesting.  The human body is not supposed to digest plastics and some of these other 'supposedly safe' foods.  You are 100% correct - the GI center needs to be repaired so we can have our lives back.

Ms. Midge -

One of the known triggers for AI diseases are fluctuating hormone levels.  So many women post of their onset starting right after giving birth.  Your story was really interesting and I want to comment more, but I have to be up at 6 AM so I'm keeping all of this short.  I don't know which ABX you were on - but it sounds to me like you were herxing - altho why you'd continue to do so 6 weeks later makes no sense.  Unless the die off was too much.  I always wonder if we on AP would do better with some sort of liver cleanse before we start so our bodies could process the toxins better.  Also, those allergies to meds can be beaten if you want to ever do AP - but it's a long process and I haven't researched it fully.  Heck, even if you NEVER try AP you might start looking into it.  You need to have as much 'fire power' as you can manage under your belt if you need it for the future. 

Cassandra -

You mentioned that a small amount of people can benefit from dietary changes but the book/author you said 1/3 can be cured.  I do not believe you can cure anything with diet (reserving judgement on some cancer therapies) but a third is not a small number.  That means 33% of RA sufferers can control their RA by diet alone.  33 out of every 100.  That's what I'm saying.  All I think is we need to figure out what our body type needs to fight this thing.  It was not gluten for me - but I stopped there.  I should have kept going, did a serious elimination diet, and I would have discovered months ago my problem is probably yeast.

Joonie -

It wasn't you and I like this type of post - usually informative etc.  You and I are alike in that we want to be there, really there, for our children.  What foods are you craving?  These are usually the allergens we should stay away from.  For me it's sugar - just the stuff to feed the yeast.  Lorster is correct, you are not helping yourself by eating once a day - even if you don't want to eat you need to eat.  We with AI diseases are almost always low on essential minerals and by our not controling our diets our RA controls us.  We may have to eat more of veggies etc just to absorb the nutrients our bodies are missing.  Check your chart - I'd bet you (we all are) low on magnesium, potassium and __________ (I can't remember).  Also, what do you mean 'born with it?'  Did you come out of you mother and they said "there's something wrong?".  Later you mentioned something about 4 or 5 years - so I'm not sure of your story.

Cathy -

Thank you for posting that article - but from where I stand, I do not expect any leading medical center or offshoot of Big Pharma to tell the average person that they can manage their AI disease so they don't need more meds.  Please understand - up until a year ago I was totally pro western medicine and pro doctor.  Not any more. 

Fiona - It's not what you eat that causes RA - it's what you eat that can help manage your RA by effecting your flares and the seriousness of your disease.  Also, I've seen a lot of research on sleep patterns of AI people - the worst being Fibro people.  Basically we do not sleep right and your body heals when you're sleeping.  Sleep more and well and you can manage your disease - like you are.  :-)  I hear a lot of docs say things to disuade people from AP and it all seems to be something the person isn't.  Like with Zeekman - AP doesn't work for severe.  Only I was sever and it worked for me.  Or it only works for people with high RF.  And of course you're not high RF.  It's always the opposite of what you just presented them. 

Clarky -

AP isn't faux science and it costs people very little compared to the traditional meds.  Those dietary changes - it cost you a book (or go to the library) or access to a computer so you can research online.  A lot less than a month supply of a TNF blocker.  Things that have ardent supporters and require no money - that's something to look into.  Follow the money.  Amazingly it ain't AP - it is, however, Big Pharma for the traditionals.  :-)

Food for thought - why do we all have so many AI diseases in one person.  RA, IBS, Food Sensitivities? 

Think of the game "Don't Break the Ice".  Remember it?  There were all these little plastic ice cubes that were on this raised plastic board.  Then, each player would knock out one cube at a time until the entire remaining plastic ice cubes would fall.  The person that did not cause the ice cubes to crash down 'won'.  This is what we are dealing with.  One cube is diet/gut issues.  Another is viral.  Another is an infection (sinus, whatever) that we can't kick off.  Another is stress.  Another is...another is...another is...Find all the pieces and repair them and we can beat this.  Listen to Big Pharma...and you'll never get well.

Pip

hey Pip! I have JRA and was DXed when I was 18 months old, but my mom knew I had something wrong with me when I learned how to walk, but did not act on it, until someone that was a friend of my moms that worked at the local children's hospital told her the way I walked could be JRA and to get me checked out.

I went into teenage remission when I was around 12 or 13, and I had a good 4-5 years of being in remission. It slowly crept back after that point. And then when I was 18 I was preggo with my daughter, and I was in preggo remission, and then after having daughter I have went down hill slowly. and then went down hill even faster after having my son.

I do not know what I crave it is mostly meat, and potatoes LOLYeah, I know, it easy to just blame the big pharmaceutical
companies. It's all just a vast conspiracy to keep people ill. Come on, isn't that just a paranoid accusation that someone uses to try and justify their position. It sounds good, but what does it mean? And for the record, I don't have any allergies and I eat healthy, exercise and I'm not overweight. I don't any health problems. except RA. I've been to hospital exactly three times. Twice to give birth and once when I had pneumonia. I've used Enbrel and MTX for 7 years and I'm doing great. No problems, no side effects.   You know, I always like a nice, warm welcome when I am new to a board.


Sarahclarky1439184.1527199074Hi Pip - couldnt quite understand your post (is late at night) Were you saying that diet cannot cure arthritis in anyone or the opposite. I believe it can in some people. The book I mentioned is called Diet & Arthritis by Dr. Gail Darlington, rheumatologist at Epsom General Hospital in the U.k.   It was a very interesting read but it is a few years since I read it.   I believe it is in one of our libraries so will check it out and read it again.   She goes into many types of diets and research papers and gives her opinion on their worth or otherwise.
I think arthritis is a symptom of many diseases, we are just stuck with the name arthritis to cover them all.
It is an interesting topic for us and I think we could well be debating it for years. Why do you think some cancers can be cured by diet but not RA? May have not interpreted your post correctly but would be interested in your response.

Pip thank you!  I can understand hard days and not communicating very well.  It happens to all of us at one point or another! 

Hope you have a better day today!

A well-meaning friend dropped the book (from the Today Show) off at my house. It is actually a very good book, I use to write reviews on cookbooks in my previous life.

However, you know you are in trouble when you look up Rheumatoid Arthritis and it tells you to see Arthritis.

All I know..is by eating "clean". (Which means salmon, chicken and sulpher veggies..no wheat..no dairy..no sugar) I take my Ebril/Imuran/Planquenil and my Cod Liver Oil. I am able to exercise 7 days a week and I have had 2 flares in a year. I needed a cane 2 years ago. I definitely think the combination has helped me. That does not mean it will help someone else.

Joonie -

Red potatoes are in the nightshade family and a lot of AI people report problems with those.  When you eat them, do you flare?  I craved beer for a long time and I think thats a connection to the yeast for me -> I am not a fan of beer.  :-)

OK, I want to throw something at you and see if it makes sense?  On other AP boards, when a mom starts posting because her child is ill, they always post that the child developed symptoms weeks after some infection.  My own daughter showed signs of vitiligo right after her bout with roseola at nine months.  Her vitaligo was noticble on her first year well child visit.  Did your mom even mention anything like that?  Something like that would be before you even learned to walk.

Clarky,

If you are new, then you don't know my story.  Suffice to say, Big Pharma and the FDA knew the drug I was on caused strokes but declined to pull that drug from the market.  It came out in the lawsuit testimony.  And while the lawyers made a ton of money, those of us let with damage did not.  You may choose to believe they are looking out for your best interests.  I now have learned the hard way that the only person looking out for my interests and the interests of my husband and daughter - is me. 

Cassandra -

I'm not sure of what the book said because I haven't read it.  I guess I'm saying if you have to live your life (even if you have no flares etc) with a diet, but going off that diet causes a flare, then I would not consider that a 'cure'.  Does that make sense?  Isn't that just managing a disease?  If that book says something along the lines of 'heal the gut' and you're cured - well, that would be another story.  :-)  That's a long involved process and I could see how that could work. 

As for cancer - I've seen a lot of ancedotal evidence on diet helping but have not researched it myself nor had to try and learn about for a family member or friend.  Supposedly the Pritkin doc kept himself alive for years on diet alone.  And some of the Arthritis Trust info is on building glutathione in the brain to combant RA - and that research was originally for cancer.  So...since I can't vouch for it myself I have to reserve judgement now.  But frankly, I wouldn't be surprised if diet could 'cure' it.  Maybe I like intregative medicine best - a combination of western medicine and herbs, diet, etc.  :-)

You said - I think arthritis is a symptom of many diseases, we are just stuck with the name arthritis to cover them all. - this is what I've been trying to say!  These AI diseases are just too similar in so many respects that I wonder if the medical establishment just want to seperate them for some other purpose.  For example, there is a 'reactive arthritis, and they know ABX will work for that, but when regular RA wants ABX...get my point?  And if AP will work on regular arthritis, why would it work on Lupus too?  Or scleroderma? 

Grammaskittles - :-) - thank you.

Gena - do you know anything (or does the book say anything) about body type or metabolism and diet?  I keep coming across stuff that says 'learn about it' and that costs about 0.  Like my hubby said - there should be a seperate ring in hell for those that earn $ on our suffering. 

Pip

Pip,

I just PM'd you on the subject of metabolic testing!

 

 

Pip-

Ms. Midge -

One of the known triggers for AI diseases are fluctuating hormone levels.  So many women post of their onset starting right after giving birth.  Your story was really interesting and I want to comment more, but I have to be up at 6 AM so I'm keeping all of this short.  I don't know which ABX you were on - but it sounds to me like you were herxing - altho why you'd continue to do so 6 weeks later makes no sense.  Unless the die off was too much.  I always wonder if we on AP would do better with some sort of liver cleanse before we start so our bodies could process the toxins better.  Also, those allergies to meds can be beaten if you want to ever do AP - but it's a long process and I haven't researched it fully.  Heck, even if you NEVER try AP you might start looking into it.  You need to have as much 'fire power' as you can manage under your belt if you need it for the future. 

I totally see what you are trying to say here. Initially I thought it WAS just post partum hormones. Since I was sick my ENTIRE pregnancy, underweight the whole time, etc, etc. And had SO many hormonal issues on top of it. (My son was in the NICU for 2wks, and they wouldn't even let us TOUCH him for 5 days. The nurse he had was an old biddy who did NOT believe in Kangaroo Care....I nearly went off the deep end, it was SO bad). I was put on Zoloft right off the bat, to try and combat my insanity. I mean, I nearly checked myself into a mental hospital!!!

The antibiotics I was always put on for Mastitis was Levaquin. My OB usually treated it with Keflex, but the first time I had it after my daughter, I had a SEVERE allergic reaction. What saved me was the fact that I waited to take it UNTIL I was in the Drs office, took it with benadryl, and they STILL had to epipen me. SO for all future Mastitis incidents we started with Levaquin right off the bat. But I had 4 doses of it when I was nursing my daughter, and NEVER had any side effects.

Fast forward two years later to PP after my son. I had TWO bouts of it in the first 6wks, and two 10-day courses of Levaquin. At 7wks PP I developed severe back pain, most likely from my epidural (but I'm such a wimp about pain, it was totally worth it. I passed out from labor pain with my daughter before my epidural kicked in). But a week of painkillers and muscle relaxers, and I was back on track. I did alot of stretching too (ex-athlete....I know how to take care of a back injury pretty well)

THEN about 3 days after my back was normal, I woke up with this joint pain. I spent that Sunday-Tuesday in bed writhing in AGONY. But it had been 3wks since my last round of Levaquin, and I was still on the ZOloft. Initially we thought it was a side effect of that, but it just got worse and worse. And if it had been a side effect of that, why did it take 7wks to kick in, KWIM???

So I was sent to a quack RD. Who immediatrly told me I was a moron for breastfeeding, and formula was BETTER for my baby, and I needed to wean within the week, or he wouldn't treat my pain (WTF?!) His only offer was to throw me on prednisone and get me on Humira. At the time I started doing some reasearch. I found this site, and y'all advised me to find a new Dr. Which I did.

Plus I had only been having joint pain for 5wks...and for them to diasnose RA, it has to be 6wks, unless there's swelling, which I didn't have ANY swelling. I'm so tiny, that you can tell if I've eaten too much salt the day before. (I was SUPER tiny after nursing and having the baby....TOO thin actually....5'4 and about 104lbs....yeah, TOO skinny. with HUGE milk boobs. hahahahahaha)

SO I went to my PCP, found a new RD, and my PCP hooked me up with painkillers to get me through until I saw the new RD, and really wanted to wean me off the pred, but was going to leave that up to the RD, since it had already been 3months.

Now, I have always known I would most likely have osteoarthritis at some point in my life. And that it would just "pop up". I was a competitive figure skater for nearly 10 years, AND I danced on pointe for about 3yrs. So I really pounded my bones. When I was about 14, you could see in x-rays I had done that I had pounded my growth plates together, and lost about 3-4inches in height. EASY. My arms are 5'7......yet I'm only 5'4. It cracks everyone up to no end. (you know, the whole, your arms are the same as your height thing...)

But I had NO idea anyone in my family had RA. Since I don't speak with my parents, it took a couple of months for me to dig some family medical history up. Turns out, ALL the women on my dad's side with the exception of his mother (who is a quadrapalegic from Polio when she was about 26) have it. ALL were diagnosed in the post partum period, just when they were in their late 20's. (hey, I had kids young)

I mentioned this to my OLD RD (I kept seeing him because I couldn't just quit pred cold turkey, and he was giving me SOME pain meds....just not enough. I won't go into how I managed to get enough to get me through most of the time. Lets just say I have amazing friends). He told me the genetic link was BS, and it has no bearing, nor did the fact that I was a skater. U