Just to clarify:
I am not anti alt-med. I am anti alt-med abuse. Kinda like I am anti med-abuse (like docs who give everyone who's got the sniffles antibiotics to shut them up, UGH I HATE THAT. Or who hand out STRONG antidepressants like they're candy). I take a snotload of supplements for seizure control (add on to meds), mitochondrial support, and because I just don't absorb food real well. Thåt's all altmed land. So is the energy healing I have done and had done.
But there are some things that I want an MD, preferably specialist's, opinion on first. Or a lot of things. But usually that means I did the research and know what SYSTEM, at least, is offline. I don't trust the GPs around here to diagnose a cold.
I mean, that I research. It's called patient education research. Essentially, I read the medical literature, and the pseudoscience, and the stuff trying to pass off as one or the other. Then I translate it for people who haven't read medical dictionaries for fun (leave it laying around, I'll read it), write articles, et cetera. Help people understand the doctorese.
And help them understand WHY things are utter hooey at best, and downright dangerous at worst. As for getting paid, I write articles. People buy them. I get a commission if they're on a website, or they buy them outright. I've written for a couple books too, but that has to do with a total other subject (autism. I am autistic, the kind with the speech delay and that isn't high functioning even if they do type well).
My manner is very direct. If you don't like it there really isn't a whole lot I can do about it. Call it traumatized child syndrome if you will; I learned a long time ago that no matter how hard I work to please people it ain't gunna work so I may as well be me and at least know who I am at the end of the day.
who wasn't trying to start a fight, isn't good at being subversive like that.
I HAVE adrenal failure. I had an adrenal crisis last MONTH when I got attacked at a university. Injectable dexamethasone (that I carry) saved my life. 5mg prednisone/day gave me my life BACK.
It did not start with adrenal fatigue or adrenal burnout. It started when my pituitary crapped out. I also have diabetes insipidus. Because my pituitary crapped out.
If you're on your way to Addison's, I suggest a good endocrinologist. And to suggest that I don' believe in two conditons that I have is
a) utterly ridiculous
FAR more insulting than anything I said.
Do I need a signablog too for people to believe that I've got medical conditions? I've mentioned this one three or four times. I believe in the "Offensive" (Hey admin, this one offended me AND was a personal attack) post I SAID I HAVE ADRENAL FAILURE.
Cripes. Now I want crepes. And baklava. I shouldn't have to defend myself against a clique. It's like high school all over again.
I guess we can call me the end to the sunshine enema.
Because I joined a while ago, and posted in all of 3 threads. Why?
Because I had the answer, not the question. I'm not new to celiac (2 yrs, and restricted diets before that), and I've been being paid for research for going on 7 years. I turn 24 next month. Science is what I believe in. I quackbusted for ages before I even got paid for it, too.
I've also actually dealt with, through proper channels, the quacky dx's people are giving themselves. There is no such thing as sleepy adrenals. No, your fillings can't poison you unless you have a crappy dentist and your mouth is full of them. You bet I have proof you can't kick-start a failed pituitary. Et cetera, et cetera. Essentially, through either experience or being interested, I know what's crap, what sucks enough to WISH it was crap, and what's the real deal.
And I say so. And people say I'm lazy for not waking up my sleepy adrenals. Find a way to wake up my pituitary, have at it.
The 10 inch long signatures of everything wrong with a person are also more than a little off putting to a newbie, though I suppose by the definition given I never was a newbie except in post count.
So, that's why THIS "newbie" only posts when specifically requested to join a discussion. Otherwise I might have to make an "everything wrong with me gram" and, frankly, apart from a pile of food intolerances and genetic weirdnesses I am perfectly healthy.
Off-put, but healthy.
science before faith in matters of heath
crucify me for that if it makes you feel better
Really, there is no such thing as adrenal fatigue.
They work or they dont (which can be either right in the adrenals-Addison's Disease, which turns you orange, or in the pituitary, which makes you very pale. They both make you deathly bone tired, unable to get out of BED tired, weight flies off you, hyperallergic, hair falls out, and achey as all get out).
Of course, there is a wide range of normal, from 'yeah they're technically normal but barely' which may be one cause of CFS, to just barely sub-Cushings (which is the opposite of Addison's, except it lives in the pituitary and is usually caused by a tumor).
But sub-optimal functioning isn't caused by wearing them OUT. It can be natural, it can be an autoimmune process that either stops or doesn't (leading to addison's), it can be a pituitary glitch, et cetera.
If you have true adrenal failure, there isn't an herb or supplement out there that will give you back your life. You will be sent from specialist to specialist, thinking you found the answer with the rheumatologist or the toxicologist or the gastroenterologist or the naturopath or whoever. And you watch the weight continue to drop, and you get weaker and paler and more convinced that whatever you have, you are going to die.
Then you see an endocrinologist. And he takes one look at you, sees that your thyroid has been tested ad nauseum TYVM, and does an ACTH stim test. Your cortisol number pre-ACTH is 3 (normal for that time of day being above 15) and after is 12 (normal at that time being at least 25). The diagnosis: central adrenal failure. Not fatigue. FAILURE.
And you will have to take steroids for the rest of your life. In case of emergency you will need to carry a kit with intramuscular needles and injectable 'stress dose' steroids. Otherwise if you get mugged or in a car accident or vomit or anything YOU COULD DIE. Your blood pressure could crash through the floor, you have shaky hands and under a minute to get the needle in because of the impending crash, but you stab yourself or you DIE of adrenal crisis.
But the steroids give you back your life, so you deal with it. And you take the risks, even the ones that might require a needle. Because life is for living.
I understand wanting an answer for a myriad of symptoms. But chronic fatigue for no good reason (or undiagnosed nutritional deficiencies, or sleep issues, or the wrong phase of the moon) is FAR more likely than "mild" adrenal failure, seeing as failure means not-working. And, having lost a year of my life to adrenal failure, having almost died of adrenal crisis, and having gone from a healthy 143 pounds to 85 pounds in several months, I do not wish adrenal problems of any sort on ANYONE. Telling a doctor you have adrenal problems can get you the wrong treatment if they believe you(and crisis-dose steroids can make you psychotic if you don't need them, even if you're normally stable as a rock), or it can make life more difficult for the person who comes in with a genuine adrenal crisis 3 days later. I know that doctors are not fashionable here, but they ARE a fact of life, and when it comes to my hormones I trust my award winning endocrinologist over the herbologist down the street any day.
If you're suffering, look for another answer. If you cannot find one, and are convinced it is your adrenals, have them tested the conventional way. Then you can get the LIFE SAVING treatment before you crash and burn really really hard.
central adrenal failure
central diabetes insipidus
ehlers danlos type 2
Head injury or 2
but otherwise perfectly healthy!
...You even have your CATS on gluten-free food b/c of cross contamination (it solidified THEIR poo too!)
...You swear that "Wheat Montana" store with free wifi was put there to taunt you
...You can PRONOUNCE Kinnikinnick.
...You've ever watched your own -scopy, and asked the doc to point out anything cool.
...You can say without a doubt that you've been forced to try some of the most BORING food EVER
...You've ever pounced on the person cleaning the toaster at a hotel so you could toast YOUR bread before someone contaminated it
If the fillings are really bad, like say bad enough to let crud underneath them, I'd bet cavity under cavity before mercury...though depending on age of the fillings who knows? And a blood or stool test is 'better' than a hair test, though hair tests are good preliminaries (since hair is contaminated by outside influences and shampooed and stuff).
And people with celiac are more likely to be ubersensitive, making it even MORE complex! Bleh.
Kassiane, vowing to never ever EVER get a cavity.
I still maintain that heavy metal poisoning is overdiagnosed and over'treated'. If you go to a toxicologist the cure is as bad as the disease (some of that may have been that I had undx'd adrenal failure, but not all of it). The machine dentists use to say someone has toxic levels of amalgams is made for a room size, not a mouth size.
Am I saying that someone can't be allergic to amalgam? Sure am not. There's 23 carcinogens in porcelin fillings, or the metals in the metal ones. If you're allergic to one you are stuck with the other. Otherwise, one chooses their risk, at least now. I don't doubt that some people are more sensitive to metals either, and obviously the more exposure you have the more likely the body is going to go into revolt.
But mercury itself is everywhere. There are people with no symptoms being treated the same way one would treat someone who had the acheyness, seizures, stupidity, going a bit crazy, turning pink (my palms are still kind of pink and it's been over a year, really weird). That's quackery. That's fearmongering and charlatanism.
As for the fillings--they're kind of the lesser of 2 evils, particularly if someone is sensitive. And of course someone with autoimmune conditions is going to be more sensitive. But until someone finds something better that isn't carcinogenic it's what the US is stuck with (I have no fillings, everyone else in my family does & they DON'T have celiac, nor are they symptomatic for metal poisoning. such is life). Having experienced life-altering metal poisoning, should I get a cavity I would risk it rather than have my tooth rot out of my head, unless the dentist provided a safe and durable alternative.
And I am going to assume that everyone knows that doing a detox protocol with fillings in is at best worthless and at worst more likely to MAKE you sick because a true chelator will grab the atoms and drag them through your system. From what I've seen this is an intelligent board, but many practitioners either don't make that clear, or make people afraid to take so much as a vitamin C until the fillings are out.
I don't like watching sports except gymnastics and ice skating. I am SO way more a participant.
I do gymnastics (highest floor start value in my gym, but lowest on bars, whee), aikido, have attempted basketball but am too short, and will give most anything a shot at least once.
Too hyper to just sit and watch though, so I don't have teams or anything that I follow.
celiac long enough to be the runt
-You've ever sweettalked exhibitors with safe food at conferences into giving you their leftovers (and ended up leaving with donuts and wannabe Oreos and animal crackers and cereal...)
-You've ever dumped someone's food in the trash since they destroyed YOUR dinner with cross contamination.
-You know how to explain cross contamination to children
-Pizza commercials make you drooooooooool
-You've taken a stool sample, unrequested and unannounced, to a doctor and said "I TOLD you so!"
-You volunteer to write labels for every (homemade) item in a cakewalk, so other people will know if its worth the dollar to go for it.
-You've nearly broken a tooth on your oh so delicious cinnamon rock, er, toast...
I think mercury toxicity is overdiagnosed, honestly.
And I say that as someone who had genuine, the numbers in my blood (without a 'challenge', chelator challenge numbers are useless) up through the roof, heavy metal poisoning. This was post celiac by quite a bit.
Heavy metal poisoning does some things. It makes you mean and stupid. It makes your joints tingle. It makes you phototoxic. It makes the joints that arent tingling ache like mad. It aggrivates seizures. It may aggrivate allergies.
It does NOT cause celiac, or autism, or 3 headedness. Nor does the mercury involved in mercury poisoning come from shots (metabolized in under an hour) or from the occasional fish dinner. Nor is it from amalgams-Ive never had a cavity in my life & I got my braces off nearly 10 years ago.
I got mercury & lead from hot water leaking from old pipes, causing them to release metals and making the paint release as well. I got arsenic from old dishes. Some was also from the air (mercury) because where I lived was a kind of grody place.
The doctors I saw said that it was EXTRAORDINARILY RARE to have heavy metal poisoning without swallowing paint chips and weighing about a third of what I do. The protocol was dangerous and required lots of blood monitoring. Kidney and liver function, metal level, complete blood count...it was a pain. And I still have to take supplements but that's no biggie. What I WAS on could have killed me, but the doctors thought the metals were going to get me first (life threatening seizures).
There are a lot of charlatans trying to make a buck off people who think the environment is toxic. Be wary. www.quackwatch.com has a lot on metal testing, and emedicine.com has a lot on the symptomology. Research before letting someone treat something that may not even be there.