***I edited the title to get pip and gimpy's attention.
I watched a REALLY interesting episode of Mystery Diagnosis last night.
Two of the stories pertain to us! So I thought I'd share the short version of them, and we can chat about our thoughts.
Story #1 -
A woman gets sick with what she thinks is a stomach bug after eating food in Paris. She has severe, debilitating diarrhea. It's so bad, that she has accidents in public! They do *all* the traditional tests on her, and the most they can say is "you have IBS, take immodium" But even taking immodium 5 to 6 times a day doesn't help.
She finally finds a doctor who tests her GALLBLADDER, and finds that it's excreting FAR too much bile. Excessive bile can cause horrific diarrhea. He puts her on a Cholesterol reducing med, and it soaks up the excess bile.
The idea here is that something she ate, triggered the gallbladder to "overact"
Story #2 - (probably the one most of you will be interested in)
A woman drops her knitting needles, and accidently steps on one. It penetrates her foot, and her entire BODY goes numb. She gets to the ER, and they treat her foot and send her on her way. She spends MONTHS battling random numbness and severe fatigue.
After visiting a few docs and the ER, someone diagnoses her with Lupus - simply because her ANA was elevated. She is started on Plaq. and other anti-inflams. They work for about 2 years, and then she wakes up one morning, and her entire body is again - TOTALLY numb.
They run more tests, and her ANA is no longer elevated, so they say the Lupus DX was wrong. Test after test, and nothing. She wakes up one morning and is blind in her left eye. They rush her to the ER, where a CT scan is done of her brain, and lesions are found.
She is promptly DXed with MS. The doctors tell her that people can "carry" things like MS, Lupus and RA for years without problems, and then a traumatic event (stepping on the needle) triggers it.
Soooo I just thought these were interesting. We have people with stomach issues as well as unDXed side issues with their RA.
Okay class, discuss among yourselves!
Both stories are very interesting. The second one though - wow! I was thinking back and I believe my RA symptoms were there for a while, I just tended to ignore them. I guess my "trigger" would have been when I broke my thumb in July 2005. The xray guy noted that I had a lot of inflammation, but I just shrugged it off. I figured it was my tendonitis. A little later in the month, I thought I had broke my other thumb - guess that was just Arthur rearing his angry head!
Very interesting segment though. Thanks for sharing!!
Oh I'm just DYING for Pip and Gimpy to get a hold of this one
Bump cause I really want Pip and Gimpy to see this.Wow...Katie. I think my RA revealed itself to me after my neck dissection. I had heard or read it could be triggered by such. Very interesting.
Katie: My hubby had a similar thing to #1 while he was in China. He knows not to drink the water. He was eating at a restaurant and the coke he ordered came with one ice cube. (Normally, they serve it without). He didn't want to make a fuss so he drank it. He ended up with the same problem and it was uncontrollable. He couldn't leave his hotel room. After several days, he was taken to a Chinese gastro guy who said his colon had been paralyzed by a parasite. He gave him some antibiotics which helped enough to get him home. He was sent to a gastro guy in back home who concluded the same thing but gave him Cipro, a stronger antibiotic. It took a month to work and even longer before he fuller recovered. He had been in China three weeks and came home 15 lbs. lighter looking week and gaunt when I picked him up at the airport. I cried like a baby. Don't eat ice cubes when in China! Becky Katie...I was watching this with incredible stomach pain...that has increased in the last few months. Yep, I cannot believe how long it took for something to be done that was helpful to these people. I guess I should remember how long it took to finally get dx. Oooh, I've heard of this Mystery Diagnosis. My Neuro I saw when they were ruling out MS was profiled on it. Aparently a woman had two kids that had this awful disease and saw 12 specialists who said it was hopeless but she kept researching, took them to the neuro and he figured out that whatever disease they had was very treatable so he started them on some enzyme and the kids were 'cured'. As an aside he was totally impressed with my AP and was going to tell the Mystery Diagnosis people about me and see if they wanted to do a show about AP but I never heard from them. Maybe they weren't as impressed by my improvement as he was...he's the only doc I ever saw that went to the websites, double checked the science on Pub Med or whatever it is MD's do...and said "there's real science behind this'. What station is Mystery Diagnosis on? How do I find it? I was going to look it up...moved...and forgot all about it. More in a bit. Pip OK - I found both these stories interesting. I was trying to find my info on AI liver disease (which at one point I thought I had) but the files are still a mess. What I thought I saved was...the liver is the only organ that is in constant regeneration. Bile, supposedly, is part of the process and is why the body can regenerate even if you lose a substantial portion of the thing. OMG - I remembered! There should be dancing in the streets! Check this out - I found it again on Google! It was cutting edge research when I was first diagnosed! http://www.sciencedaily.com/releases/2006/04/060414013606.ht m Pip I think the second story is amazing because of a couple of things. 1) Plaq worked for a bit? 2) You 'carry' things for a bit until something brings it out. There's been a lot of links to 'trauma' of some kind - be it physical or emotional. A lot of us here have reported physical manifestations (sore throat, dental work) but I think there's also an emotional aspect to this from the people who report being Type A's with all kinds of stress. Hugs, Pip There's no way any of us would have known about that unless we thought we were dying of it! At least it's the only reason I found out about it. So...according to that article, the imbalance in the bile would suggest that she's heading down the road to another AI disease. Poor thing. Hopefully the cholesterol soaking meds help her for a loooooong time. Pip I don't know. My abscessed tooth moved to my salivary glands within 3 weeks of having that tooth removed. To me...it was linked...to the MD's... it wasn't. It sounds like the Mystery Diagnosis people didn't give us enough info. LOL Yes, and Plaq can work for MS. It said they treated her foot at the hospital. Wonder if the antibiotics made everything 'come out' and herx party. I bet you're right and she had a lot of symptoms that she discounted PRIOR to the needle. I know I had signs that if I'd only known what they meant, I might have been able to ward this off. Pip Arrrg! I didn't read it all the way through. I just read enough of it to be sure it's the one I was thinking of. Doctor Katie, you're right, she shouldn't be on the meds and she'd have been better off without the gallbladder. I can't tell you the number of times I've read something in the newspaper or saw something like this show and I'm sitting in the background shouting "Don't do it" - just like those horror films and you KNOW they shouldn't seperate, or open the door, or whatever! I think it a good post and I need to ask my hubby to start recording the show for me. I think it sounds like a real life 'House". Pip This is a link I found from Mercola - that for some reason I keep coming back to. Not sure how much I believe this...but....
Further, Dr. Hamer believes that a person cannot die of cancer in and of itself.
Isn't it interesting that her MS was "triggered" by the traumatic event? I wonder if she had ever had any mild symptoms prior. Things she just ignored because they were bearable. KWIM?
I think what got me about the trauma bringing it out, is how FAST it brought it out. She stepped on the needle and IMMEDIATELY her whole body went numb and tingly. I'm not sure if that's because of it being MS, and nerve related or what....it just seems awfully extreme to me.
Also - the article you posted was stating that people who take cholesterol meds do not regenerate their liver like everyone else - by taking those meds is she facing the possibility of destroying that function of the liver?? (regeneration)
Anyway, I just thought it was too neat not to share!
year old girl who had gone skiing. She ended up taking a bad tumble on the
slope and somehow, her ski, gouged her in the lower abdominal area. It was
blunt trauma, so no open wound but they ended up taking out an ovary and
she had quite a bit of internal bleeding. Well, the bleeding didn't stop. We
kept transfusing and transfusing and still, her blood count dropped and she
kept bleeding. Well, she ended up dying. Of leukemia. They flew her to a
big center for treatment and the doctors there told the family that the ski
accident triggered a leukemia that had probably never surfaced and the
stress had activated it. Was such a weird situation. Was very sad for all that
took care of her. Anyway, I know these things do happen.
A New View of Cancer -- German New Medicine
If someone dies during the conflict-active phase of disease, he says, it’s because of energy loss, weight loss, sleep deprivation, and emotional and mental exhaustion. The stress of receiving a cancer diagnosis, or being given a negative prognosis, is often enough to deprive a person of their life-force. Conventional cancer treatments only accelerate the downward spiral.
If a patient has not undergone any conventional treatments such as chemotherapy or radiotherapy, GNM has a success rate of 95 percent to 98 percent.
While trying to publicize his findings, Dr. Hamer has been persecuted and harassed by German and French authorities. He is now living in exile in Spain where he is continuing his fight for official recognition of GNM.
Dr. Mercola's Comments:
I have long maintained that your emotional state plays a role in nearly every physical disease -- from heart disease, to depression, to arthritis and cancer.
Even the conservative Centers for Disease Control and Prevention (CDC) states that 85 percent of all diseases have an emotional element. And I believe the actual percentage is much higher.
It is not surprising that Dr. Hamer has been persecuted for trying to publicize his GNM findings that solving an emotional conflict is the first step to healing disease. Most all new theories, particularly those that go against recommending drugs, surgeries, and conventional treatments, go through this. It makes complete intuitive sense that the stress of receiving a negative prognosis -- "You have six months to live" -- would be enough to make a person give up hope entirely.
And, of course, once your mind gives up hope, your physical body will follow.
Fortunately for you, the converse also holds true.
If you tend to focus on pain, misery and grief, you will tend to experience and attract more of that into your life. Alternatively, if you keep your focus on what you want to experience and put some energy into healthy lifestyle choices, your body really doesn't have much of a choice. Before you know it you will start to feel much better.
Quite simply, it's one of the most amazing and remarkable transformations that you could possibly imagine.
If allowing your body to heal itself by resolving your emotional conflicts is as intriguing to you as it is to me, please do read through the PDF file above. It's a fascinating read!
Also, remember that you can get a better handle on your emotions and pain, including the stress from unexpected tragedies, by learning the Emotional Freedom Technique (EFT), my most highly recommended energy psychology tool.
One of my other favorite strategies is to focus on W. Clement Stone's strategy. He was the most financially successful student of Napoleon Hill and was a billionaire in Chicago. He died at 100 years old a few years ago. He was fond of taking the position of an "inverse paranoid". He firmly believed that most of the negative events that occur in your life can be viewed from the perspective of life trying to teach you something that will ultimately improve you.
Sounds like a simple and perhaps naive approach, but it has powerful potential to transform many of the negative consequences that some of life's events will throw at you.
I saw an awesome Mystery Dx episode once that had two JRA/RA stories in it.
#1 - Woman dx'd with RA, but nothing helped. She gained weight, was miserable, was treated like she was crazy when nothing helped her, was told to lose weight, told to do more, get up more, etc. The best part? Her sister, saying, "I knew this wasn't my sister. I knew she wouldn't make this up. I knew something was wrong." She had great support, but still even she doubted herself.
One day, she decided to do situps, to try to lose weight. When she bent, she had terrible pain. At the ER. they said an ovarian cyst had burst. She was so relieved, to know what was wrong, what had caused all the pain, but it was so huge and so bad, the doctors were like, it's not over yet, you could die. But they did take care of it, and she is fine, and never had RA.
#2 - Jackie Spar Lyme story, very famous. Dx'd with JRA, but nothing helped. Parents told she needed a psychiatrist, etc., but her sister would see her fingers just curl up and stay deformed. Then they were told she had RSD, where your brain cannot process pain properly and you think it hurts more than it does. Sent to 'pain boot camp', where they torture you until you forget what pain is (my opinion). She said she would vomit from the pain, it was so bad. Parents told she was too dependent on them, trying to get attention for pain, so they sent her on a trip alone.
She called the first day and said, "I know what I have! I met a girl just like me! I have Lyme!" They said you are crazy, you have been tested and tested and you are negative, but she was insistant and they went to the girl's dr., and he found Lyme. She said she can function now and live a normal life, but she will always be on meds because of how long she went undx'd.
Does anybody think that if they want to heal they have to deal with emotional issues?
Pip
Absolutely Pip
Having suffered thru many traumatic events (without getting personal and stating all the family history disfunction) truly IMHO added to severity of my disease. Throw in two almost exactly a like falls involving spine as triggers and DX as severe refractory RA (untreatable). The emotional issues had to be dealt with like peeling an onion. All the buried emotions had to be dealt with and released.
I think all RA sufferers are in need of emotional support. Forget the pride. It will speed the recovery. I can't stress this part of the equation enough. My estimate to be 1/3 of the puzzle.
Hope this helps!
LuAnn:)
I agree that there's a huge connection between our emotions and health. Soon after my SIL died, my MIL was diagnosed with ovarian cancer. She was SO healthy up until then, we all called her "The Ox." And how many times have you heard of a spouse dying soon after the other dies? Happens all the time.
I have a question for you smart people. I had read that there was a theory that breast implants and/or collagen injections were a trigger of RA. If that's true, there's going to be a lot of RA in Hollywood. I believe they ruled out the implants but I never heard anything else about the collagen. What's the latest on that?
P.S. No, I don't have implants and if you could see me you wouldn't even have to ask. I just think about that plastic and silicon, seeping into the bloodstream and
over time, it has to have an effect on the body. Just like makeup, lotions,
deoderants, etc, rapidly absorbs into our bloodstreams. The skin is the
largest organ and over time, all these cosmetics that women use, can cause
some problems for us. That is just my opinion and one reason I don't wear
makeup, perfume, deoderant, lotions and so forth.
I wanted to clarify a comment I made in prior post. By saying RA sufferers need emotional support, I did mean of the professional kind and not forum kind.
As far as implants, I would be leary. I was asked some 17 years back when first DX if I had implants. Doctors knew something back then. It makes you wonder????
And no I did not have implants LOL
LuAnn :)
Katie, for the most part, I agree with you. We've all been thru a lot in our lives and I never really saw the need for either a shrink or meds. (I am not trying to be offensive to people; it's just how I was raised and how I lived most of my life). I always believed you 'worked thru' any problems and just kept putting one foot in front of the other and eventually you'd 'get over it' (whatever 'it' was). There have been two times that I needed some counseling - both times were short term until I could come to grips with something.
But that being said - I'm wondering if perchance LuAnn isn't more correct than I wanted to admit to myself. I think I've posted here that I was dealing with an incredibly stressful situation (understatement of the year) and there was a point when a friend said "you're reaction to this is making you sick". And I knew she was right. I knew it and I tried to change course - but it was too late.
Some of the research I've seen on the mind/body connection is now making me wonder how I should handle the rest of my healing. My natural inclination is exactly how I handled this PRA diagnosis - find another way around the obstacle - and I did.
But the other part of me says work on forgiveness and humility and 'letting go' or you're never going to get your 'cure'.
It's just that I've seen so many posts like GoGo's on the equivalent on Jedi Mind Tricks or EFT or whatever - and I just don't know how it could help somebody like me and how I was raised. You know, 'buck up, don't be weak' etc.
Also, I've been thinking about this whole thread today and wonder how this could apply to JRA'ers. There are too many studies about the mind/body connection for adults - has anybody ever looked into it for kids? Some traumas could be easily explained but others...could a child get sick on 'separation anxiety' or whatnot?
Pip
I was gonna say "what about us JRAers" LOLI think, from what I have read, most JRA is an infection connection.
As far as support, it depends on the need ie; anger management, depression, abusers, etc. Help for the individual need can be found by self help-books, churchs and organizations that provide services on sliding scale basis.
The biggest thing is NOT to hold on to negative emotions and/or experiences. LET THEM GO. Resentment for an individual for what they did or did not do doesn't matter in the long run.
An good example would be these constant battles that go on here :)
You can not change people, you can only change yourself and how you react to people that push your buttons.
LuAnn:)
Yer so smart LuAnn!LuAnn - think Ode to Billy Joe or some such nonsense. When does a person need to fight back? When is compromise/forgiveness not an option - and how would it effect us RAer's.
Hey, Katie - ever notice how JRAer's say they are lucky in that for most...it's not like adult onset. Maybe it's easier (not as painful???) when the emotional connection isn't there.
Am I making sense?
Pip
Yes, you are. When I look at how RA slams into other people's lives, I simply CANNOT comprehend it. I feel so bad for them. But this is something I have always known, so I don't have the same emotions involved. That's not to say it isn't hard, or frustrating, or that it doesn't make me angry. It's just on a very different level.Pip,
You can state/stand your position without the emotion. I always say Neutral is best. If something makes you mad, change the channel until you can react detached. Make sense????
LuAnn:)
Katie,
Have you ever watched kids fight. They go at it and then they are done. I am referring to the toddler group. Not too many children hang on to anger unless that's what happens at home.
:) Yep you are.....
From some stuff I've read - it is. Kids are more imaginative - they don't buy into the word 'cancer' like we do. So...tell them they have to pac-man the cancer...and they do. Again, more mind body stuff.
OK, so what if kids are hit by RA - but they don't have the emotional 'trauma' that an adult would to precipatate it - their RA would be less severe, right? Not that it's not bad, or they aren't getting damage, just that the pain might somehow be more emotional. Like 2 separate issues - pain from RA and pain from the emotional/physical trauma. Get my point? That would make it worse for adults then, I think. Gee, can I get any more hesitant about this, or what? This might explain the 'phantom pain' diagnoses or the studies that show once pain starts it keeps escalating - even when the pain itself is gone. Kind of a self-fulfilling prophecy?
Jesse - I keep forgetting to mention - I saw something a couple of years ago about a woman who had breast implants and got some sort of AI disease. This was before I got some sort of AI disease - so I don't know exactly which one because, back then, they were all alike to me. ;-) She was on a crusade to warn women of what could happen when the darn things leaked.
Pip
Adults tend to keep the trash in their heads and play it over and over.
It took me, embrassed to say, 50 years to figure out but I also had alot to deal with in the generational dysfunction arena.
I now count my blessings not my losses.
LuAnn
Oh man, they leaked???? I'm thinkin' she's lucky she ONLY got an AI disease.......That's scary!Another point is alot of JRA kids I know outgrew their condition.
There are so many things to bring it on... deaths in family, childbirth, falls, infection, loss of job, etc. etc. as individual as the person.
To improve condition we know nutrition, exercise, breathing, handling stresses are main keys to severity etc. Simply things sometimes make the biggest differences. Ok jumping off my soapbox...
Good night
LuAnn
LuAnn - check in in the morning! LOL
Katie - is that what you see...19 - 25-ish? Is that your experience with other JRAer's? I don't know a lot (except here) so I get a different scenario. It seems to me that those who had it as kids go into remission around 11-13 (mense?) and come out either after birth or entering perimanapause. So...some sort of hormone/estrogen connection.
Could a tattoo do it? I thought a lot of that stuff was a lot safer nowadays. I don't see you as a 'prison tat' kind of girl. Don't they use fresh needles and fresh dyes now? But I could see stress from college etc. Little Mermaid's been dealing with that.
I don't mean to push for answers, it's just something you once wrote about JRA combined with something somebody said on AF made me have this 'idea' about the differences between JRA and RA and it was HUGE. Of course, I didn't write it down and LOST it. But it's important and if I can just find it again...I even went so far as to search AF for it but couldn't find it again.
Pip
Yeah it does seem that a lot hit remission around the 11-14 mark. I think there is a hormonal attachment there. As far as coming out of it, maybe my age range was too strict. I see 19-30, now that you mention giving birth.
As far as the tattoo goes, I don't think it has anything to do with the safety. I'm thinking more a long the lines of the voluntary trauma to your skin, and the healing process. You're "injecting" a foreign substance into your skin. KWIM? You're purposly(sp) invading the largest organ in your body. (I LOVE my tattoos BTW...lol)
I'm really curious what it was you thought of!!! You've gotta find it!!
You know, there's a whole different section of JRAers - those who don't GET IT until the 11-14 range. Like Danielle, and our newest member's daughter. So are they destined to be the kind who get it WORSE during pregnancy, and then are fine once the baby is born?
Ok, that makes more sense - and you're right with trauma being a factor, and the skin being the largest organ; it's one of the big 3 in keeping us safe from infection (lungs and gyno/urinary tract being the others).
I think the JRAer's who get it as teenagers are more like the adults. They'll probably get pregnancy induced remissions and flare after the baby is born. From what they've posted, I get a feeling they have more pain.
The only other explanation I've seen is that kid JRA'ers 'don't know anything else so they don't know what pain free is' - which I think is BS. You know if you hurt, right? And mom's of JRAer's know when their kid is in pain, right? I think there is a difference in the level of pain. Does that make sense? So...either the emotional trauma is the difference...or something else is.
Is your pain different from when you were a child? You had a remission, right? Does it feel differently?
I know I sound arrogant as heck about 'the key' but I just can't shake the idea that I 'found it' and then promptly lost it. What a moron! I even went to write it down and got distracted - and that was that. It was something that explained the differences between JRA (both onsets) and RAer's. It happened when I woke up one morning and was lying in bed just thinking about this stuff. You know, that half awake place where you can make creative connections. All I truly remember is the 'key' is in something JRAer's say about similarities in what they feel. You and Joonie had got into a post explaining something from the JRA point of view and later another JRAer on AF said the same thing - and my brain went "Eureka!" but not eureka enough to write it down. It's something I want to research. And I know it's related to how we can get permanent remission.
So, sorry if it sounds silly - but I need to find it again, even if it is. Does that make sense?
Pip
Is my pain different from when I was a kid? Sometimes. It can be a lot worse now. But I'm pretty sure that age and the stress of adult life have something to do with that. There are some pains that stop me now, that I don't think used to stop me. But I was one of those kids who HATED HATED HATED to be left out. So I pushed through *everything* If I stopped doing something, because of pain, we were headed to the ER. KWIM? [QUOTE=arriscolwell]Is my pain different from when I was a kid? Sometimes. It can be a lot worse now. But I'm pretty sure that age and the stress of adult life have something to do with that. There are some pains that stop me now, that I don't think used to stop me. But I was one of those kids who HATED HATED HATED to be left out. So I pushed through *everything* If I stopped doing something, because of pain, we were headed to the ER. KWIM? [/QUOTE]Well, whatever working hypothosis I develop (LOL) it had/has to take into account all aspects of this disease. Don't you just love it when you're reading a study and the researcher says something like "but not for JRA" and I'm going - "well, then, your theory had a great big hole in it".
Another variation is Palindromic RA. We have off the charts pain and pretty much all of us say 'gnaw your arm off' as a level. For me, I explain it as feeling a red-hot-icy-cold-icicle jammed up through your joint. My first ER visit and 2 shots of morphine didn't touch the pain. So, why is the pain level so much more than many post about? And why do we not necessarily get joint damage?
If I believe its microbial in nature (and I do :-) then why isn't it hitting everybody pretty much the same - and how do we exploit that to heal ourselves? Think about a cold. You remember what a cold is like. Sometimes you're achy and sometimes you're stuffed up - but the symptoms are pretty much the same. But if you get the flu it can have a LOT more variations. It's still intestinal flu...but it could be effecting north or it could be effecting south or it could be achy and nausea but no north or south. Both are viruses - but one is 'worse' for most people. It's the same with us. Our symptoms are all over the board. If our bodies are attacking ourselves - why isn't it more of a progressive disease? Like MS or ALS? Get my point? Why is my body fighting off one part of this and not another?
Individual human variations only go so far. I think the emotions play a role...but I'm not sure it's as cut and dried as that. Why are our cells so resistant to hormones? I didn't even know insulin was a hormone until a few weeks ago.
I know I've hijacked this thread...sorry!...but I keep coming back to the kids with JRA. They are the key. And Suzanne says there is pitiful little research on them.
Pip
It's not hijacked. It's "evolved" [QUOTE=Jesse88]Thanks for your response, Pip. I think I've read about implants leaking too. The comment about tatoos was interesting. And what about Botox, a poison? Like a comment made earlier about anything we put on/in our skin affecting us, I worry about the sunscreens, lotions, hair dyes, etc. What's benign and what isn't and what's a trigger for you (stress, trauma, collagen) that might not be a trigger for me? I mean, how far do we go with this? It could make a person afraid to do anything for risk of bringing on an AI disease if we know it's in our family. Which brings me to this: Is there anything we should be advising our younger family members or doing differently to make sure they don't trigger the AI disease? [/QUOTE]Jesse - did you see any studies on Botox causing AI, because I hadn't heard that? I know they're experimenting with bee venom for MS (too many people saying it helped them) and that's a toxin. But I got to agree with both you and Katie - introducing a poison into your body - can't be a good thing.
You know what I think - I think we're the Joker in the Batman movies. Think about it. He put the chemicals in the deodorant and the hair spray and the lotions and depending on the combination you ended up looking like the Joker! That's us! I remember thinking that's what was going on with enviromental toxins at the time...just didn't think it would actually be me in the future. LOL
Pip
Oh man, Justin would LOVE that! He's a batman freak!! Oh, I might be brain dead and we may have already touched on this.....I'm going to start a 'poll' thread. There is something I would never allow my daughter to do - that I did. But now that I know what I know about how these diseases work...never in a million years.
It's Accutane. I think it really contributed to my developing this years later.
Pip
Whats that?
I was once on a thread where every person on it had been on Accutane. Only 3 or 4 but I went - 'OK, that's odd, run a poll', but I never did.
Pip
Wow alrighty then. Accutane is another one of those drugs that can really help people, but you need to be REALLY careful. It's not for garden-variety acne. I've had a couple of friends who had horrible cystic acne - it's very painful, and the cysts can get infected. It's nasty. Accutane works great for that, but it's not without severe risks. Kinda like thalidomide (now used for leprosy and some leukemias, I believe), methotrexate (we all know about that one!), etc... bad, nasty stuff, but for some people the benefits outweigh the risks.Yes, but I didn't really have all that bad acne - I thought I did. My ex-boyfriend did - and he wouldn't touch the stuff. I do know at one point the dermatologists were handing it out like candy to any teenager.
You guys all think I'm anti-western med - but I'm telling you, there was nothing I wouldn't believe in and try if a doc told me it was OK. It wasn't until years after my adverse reaction when I got diagnosed with this garbage that I said....whoa, there has to be a better way.
Pip
[QUOTE=Pip!]Yes, but I didn't really have all that bad acne - I thought I did. My ex-boyfriend did - and he wouldn't touch the stuff. I do know at one point the dermatologists were handing it out like candy to any teenager.
You guys all think I'm anti-western med - but I'm telling you, there was nothing I wouldn't believe in and try if a doc told me it was OK. It wasn't until years after my adverse reaction when I got diagnosed with this garbage that I said....whoa, there has to be a better way.
Pip
[/QUOTE]
I was vain and stupid. Truly, with how these diseases work, I don't think I did my body any good.
Good analogy.
Pip
Katie -
Maybe it's like that post GoGo made about the cancer and the car accident or Lori (???) made about the cancer and skiing accident. Something in the body went hog wild with minor provocation.
Makes you think of a dam bursting, doesn't it, with some of these posts...like all the right ingredients were there and BAM!
Pip
Edited for incorrect use of homonyms and the spelling of homonyms!
Yikes, Pip! I was on Accutane twice, once in my early 20s and again in my 30s and my daughter has used it twice too. We each had to stop early because of bad liver blood values but we both were on it about 4-5 months each time, almost the full amount required. It was supposed to be the magic bullet that stopped acne forever, but not so. It really did stop it for several years, though which is why I tried it again. Oh boy, I'm really going to be mad if I did this to myself and worse, my daughter. My husband didn't want her to do it the first time, but I supported her but I did try to discourage it the second time. Now I wish she/I hadn't touched the stuff at all. BTW, I have acne again, now that I'm on hormone replacement. My sister with RA never had Accutane but she has had collagen injections many times over the years and I wouldn't be surprised if my niece with the lupus did too.
Pip, I haven't seen any studies that link Botox to AI diseases, but it just seemed to me like something that could cause trouble. I mean, if collagen was suspect, why not a poison? I'm still wondering if collagen is still listed as a possible link. I've seen old articles mentioning it but nothing current. Anybody know?
Oh, I just remembered something I asked my RD at one of my first appointments. When I was asking him about things I could/couldn't do now, I had on my list (for future reference because yes, I am vain), was lasik OK? How about collagen, botox, restylane, etc? He said OK to all and said the studies did not contraindicate any of them. I have since had lasik, also with my opthomologist's blessing, and it went very well, no problems at all, but that's not something I'm injecting into my body so that's it for me.Within the last month on the Roadback there was a 'spat' over the use of the term 'collegen diseases'.
There is a guy over there that doesn't believe Mino is killing microbes and apperently neither does Dr. T from Harvard - an AP researcher and quite a bigwig in AP circles. Well, this guy with SD posted that these 'collegen diseases' are mediated by Minocin. And somebody else jumped in and said "no it doesn't, there's no research to prove it effects collegnese production etc." and apparently there isn't any research.
That being said - how could it NOT effect collegen? SDer's have their collegen harden, for want of a better term. Something has to be living off it or 'raiding' it for it's own nefarious :-) purposes? Where do they get the collegen they inject into people anyway?
And has anybody seen my Milly?
Pip
Jesse - so far it looks like it's only a couple of people - so we shouldn't freak yet. If we were at 30% I'd say there was a link - but as of right now it's just you and me.
Hugs,
Pip
[QUOTE=Pip!]Jesse - so far it looks like it's only a couple of people - so we shouldn't freak yet. If we were at 30% I'd say there was a link - but as of right now it's just you and me.
Hugs,
Pip
[/QUOTE]That's worth a lot. I'm telling you...I was a bit worried about the connection.
Pip