Mysterious illness. Help, anyone?

I tried to private message you but for some reason it would not let the message go through so here is what i wrote responding to the last message you sent me

"Valerie,
Not sure how old your message was but I havent been on in a while either. If I were you I would look over the information on lyme disease www.lyme.net There is a huge political controversy with the disease unfortunately and alot of dr.'s will not even acknowledge it.. It is often misdiagnosed as fibro, chronic fatique etc.. MY lyme dr actually believes all the chronic diseases similar to fibro/chronic fatique that are incurable are most likely lyme misdiagnosed! Most dr.'s know very little about lyme disease. Your symptoms sound very similar to mine before i was properly diagnosed.

I don't mean to harp on you about it. I just went through hell with the medical system before I got a lyme diagnosis. There is also a movie being made about it all http://www.openeyepictures.com/underourskin/ You can watch the trailer there and it will give you alot of info. I just would be careful accepting a diagnosis to a disease they are currently offering no cure for.
I was treated for various illnesses for 10 years until i tested positive for lyme last dec. So, just trying to look out! You really have to be your own dr. in ways
Oh and btw alot of the testing isnt sensitive enough to detect lyme bacteria in people who have been sick for along time bc the disease goes into cyst form and isnt present in the blood... you would need to find a LLMD (lyme literate medical doctor) if you were interested in being evaluated. it is considered a clinical diagnosis since the testing is so unreliable. good luck!



one more thing i just remembered that might help is something called mangosteen juice.. it helps people with fibro symptoms alot i have read.. and all kinds of conditions/diseases. its expensive at 35.00 a bottle but you only drink an ounce a day and it last for a litte over a month. I can tell you this alone has helped me more health wise than anything ive tried. Good luck! the website for the brand i use is www.xango.com but geneisis today also makes it. if you google around you can read more info if youre interested. For the psychiatric stuff i would reccomend lithium orotate (its not the lithium prescribed by drs.. its lithium in its natural form Over the counter... ) It actually protects the brain from toxins which cause all those nasty pysch symptoms. this is the brand i use http://store.renewalenterprises.com/lithium.html

Hope you feel better soon!
~Julia
"

 

Yeah, a long long time has passed since I first posted this topic. But we've found the culprit: Wheat allergy.

After everything I went through with the Western docs, they told me I had Lupus, then Lyme Disease, then MS... I finally went to a holistic doc and he figured it out.

Basically, I'm allergic to wheat (but it's not Celiac disease), and eating it caused my immune system to shut down and my adrenal glands to stop working. I have since quit eating wheat and have been taking something the doc gave me for my immune system and adrenals. I'm still sort of in recover and may be for years, but mostly I'm back to normal.

Thanks so much for all you're help everyone!

 

Hey Valerie/VioletBlue,

Would you be interested in sharing your story? I'm looking for interesting hard to diagnose medical stories to use for season 2 of an existing reality TV series, and what you went through is intriguing. Sounds like you went through a lot of trauma to get an answer.

Our only prerequisite is that you had visits to an ER to attempt to solve your illness. If so, and if you are interested, hit me with a message back and let's connect.

Michael

 

i had simalar symtoms and went through many tests they foud out that i had nueroapathy and said good luck and sent me to pain mang.but that means more pills i have found a d.o.m and she has help me with the pain with herbs.and accupuncture.this helps but do your own research and take your health in your own hands.goodluck.

 

my sis was going through SOME of the same symtoms, when she told me of them i rememberd a dude i met who hade been diagnosed with. rsd but now they have differing names for it !!!! try this,
www.rsd.hope it may not be what is bothering you but the symptoms are simerlar, wish you the best!!!!!!!! peace!

 

www.rsdhope.org

 

get tested for hughes.. look at my post when you get the chance for "support" .. not many doctors know much about hughes, but ask to get tested anyway

 

I'd see a couple more doctors...like any other profession, doctors can misdiagnose or mistake one set of symptoms for a different disease. Ask for all of your endocrine functions to be tested, get tested for EVERYTHING that could possibly be wrong with your glands and hormones, etc. Get a second and a third opinion, don't just trust what the one doctor says...seriously, I got boned by listening to just one doctor and when I get a second and third opinion, I found out a great deal more and got a lot of health back in my life

 

oops, just read your latest reply...that makes a lot of sense, actually...I have food allergies too, and it's amazing how many mainstream docs don't even take into account your diet and how it can have an effect on your health...a lot of them don't even think of food allergies at all! Well, I'm glad you found your culprit!

 

hughes is a bloodclotting disorder and usually has no symptoms except for being slightly lathargic and can cause miscarriage. i doubt thats what it is and a doc usually wont test for this unless you have had miscarriages which i am assuming isnt a problem here.

 

Hi Violetblue, i had similar symptoms some years ago and it turned out to be glandular fever. The doc said there was no specific treatment, just rest up and avoid alcohol and fatty foods. I recovered after about six weeks, but felt off-color for another six months.