Wow, after all that, EDS accounts for all your symptoms? I was thinking Lyme or another tick- borne co-infection.
I'm glad you finally got diagnosed, and wish you the best. Medical advances happen all the time, so don't go by the "age 48" deadline.
You may want to look into IV nutritional therapy
If you can tolerate meat and water, try gelatin from grass-fed beef bones, slow boiled 48 hours and 24 hours for free range chicken bones, for a great way to get natural collagen. You will also benefit from all the minerals.
This will help also with digestive and gastro-intestinal issues.
Wishing you well.
Niko
I'm already doing most of the recommended supplements.
Diet is very limited at this stage as my digestive system is shutting down. Meats and water seem to be the only somewhat tolerated food.
It doesn't even really matter anymore. Just so glad I got diagnosed before my clock counted down.
If anyone else here with "Fibro" is double jointed I suggest you read up on EDS
Well, there's some hope.
"Nutritional, Therapeutic Strategy for Ehlers–Danlos Syndrome"
Just do a search under this title.
Best,
Niko
An old old post but I wanted to share with everyone my real diagnosis after all these years (15) and dozens of doctors all over the country.
I'm double jointed
Yep just as simple as that.
Hypermobile people are prone to a syndrome. It goes by the name Hypermobility syndrome or Ehlers Danlos Syndrome.
There's no cure and average life expectancy is 48
Just thought I'd share.
And if you happen to be double jointed here's your answer.
Did your results come out.
curezone helped me figure out the prblem,no doctor will
I was in your situation.Homeopathic doctors may help you but western medicine doctors wont.I found a curezone and did a total body detox and it helped a lot
Just a little update.
Had a odd rash come up the other day. It seems typical of Pityriasis rosea. Doc did a biopsy to see because he suspects some other cause. Biopsy came back as an allergic dermatitis condition. Stoped taking all meds except zantac which is a must. Somehow I doubt that flexerile or tramadol could be causing a reaction. And the zantac I've been on for over a year.. The rash continues to spread and going without the pain meds is quite challenging especially in the sleep dept. Also seem to be feeling hotter than normal especially after meals yet temp readings are norm. we will see.
Haven't been on Plaquinil. Doctors have been reluctant to prescribe much of anything beyond the typical antidepressants, and Tramadol for pain. Didn't realize parasites were so difficult to diagnose. Thought endoscopy was a sure way to find those.
Thanks for the info.
There is an alternative med clinic within driving distance. I'm going to make an appointment with them and see what they have to say.
Mercury levels can be tested. I thought I had a problem with it so I ordered the test myself. You can do that through http://www.healthonelabs.com/ and pay for it yourself. They do other tests too. You go to LabCorp after you pay online, the tests are cheaper that way and if anyone is a self pay, this is the way to do it. Whenever my doctors don't want to run tests, particularly if they think insurance won't pay, I do it this way, then take the results to them if it isn't obvious what the results are.
I'm not doing too well cognitively right now so if you mentioned this, I apologize. If you haven't seen a naturopath or homeopath I would see one. Alternative medicine is getting more and more recognition. One of my doctors has Harvard and Yale degrees and she does the alternative medicine stuff with me. Most medical schools now are setting up alternative medicine clinics.
By the way, not any dentist can remove teeth with mercury? You have to go to a bioengineering dentist certified in mercury removal or you will be releasing more mercury into your system.
Have you tried plaquenil? Also since you have been in swamps etc you might try seeing a doctor who sees people that travel to 3rd world countries etc. This is a specialized area. You might actually have a parasite of some sort. I have seen that before on mystery diagnosis. A regular doctor probably might not catch something like that-leptospirosis, lungworm, there are lots of intestinal parasites and they are not always caught by regular stool sample or colonoscopy. In USA you don't see them so much so doctors don't look for them.The doctor has to know about parasites to diagnose them. You can have them for many years before you get diagnosed. In India, many live a lifetime with them in their bodies. It's a long shot but maybe worth a try. These docs are usually in large cities. Also, what about another tick born disease like more common ones-Rocky Mountain, etc.
My regular dentist basically said no way in regards to removing the filling. I guess because of the issues of grinding dust particles. I understand that there are some that specialize in this though. Don't have all the details on that yet.
May have to give the Tuzen a try. I tried a few different probiotics and some were effective.
No aspartame. Over the years I have cut out various things that could be suspected. Caffeine, sugar, gluten, milk, etc.. I even went so far as to cut out all liquids except distilled water for an entire year.
The only for sure thing I discovered from all that was that I needed to stay away from the caffeine.
I go back to my primary doctor Thursday. Surgeon I went to only wanted to close up the veins in my legs. He didn't have any recommendations for all the other vascular issues.
I think I'm going to at least get the abdominal and pelvic CT done whether ins. pays for it or not. Mayo doc wanted to do that for some reason. From what I've read an MRI would generally provide better images, with the exception of certain soft tissues.
We will see.
Another thought is to have a biopsy done on a lump inside my mouth. It's BB sized and came up last September. It hurt initially (came up overnight) and the pain went away over the next few days. Everyone has tried to reasure me that it's noting to be concerned about, explaining that it's just a salivary gland or something.
Like most everything else, whatever I have done will be most or all out of pocket procedures. I just have to figure out how much money to throw at this and in what order.
I can't help you with the pain or veins or anything except the stomache issues and helping your immune system...Try a probiotic called TUZEN, you can go to their website and get a free 30 day trial. It will help balance your stomache flora and make that area a bit better and boost your immune system. When your immune system gets a boost it usually helps other areas...not a cure by any means but help for the stomache areas.
Do you eat or drink a lot of stuff with aspartame?
extracting the tooth sounds extreme... is it possible to have the filling removed and replaced?
Terri that's a very good question!! I personally believe mercury to be a toxic metal and was not intended for human consumption OR to be implanted in a human in any way.
I'm in Vidalia, Georgia
From what I've read about fillings, there isn't a way to test and see if that's the issue. I'd hate to have a tooth pulled with out knowing for a fact that it is the cause. It's hard to imagine that something as simple as a filling could cause issues like this. This is another one of those things that falls in a "voodoo" or "witchcraft" type catagory for most doctors it seems. (sorry dont know of a better term)
It would be great if it could be proven though. What would have been better is have never had it done in the first place. That raises another question. Why would the ADA allow mercury fillings if no one could prove whether or not they could cause a health issue?
I would have that filling removed & replaced. Find a Naturalpathic doctor that specializes in heavy metal poisioning. You've become so sick it will take a long time to get better, but you will have a better quality of life. Where are you locayed?
Look around ur area for a foot zoner (heals through the foot and there's much to learn through a foot zone about onesself) and iridologist (heals through what the eyes tell). Wouldn't hurt. I use both to remain balanced as a whole and healthy
Look around ur area for a foot zoner (heals through the foot and there's much to learn through a foot zone about onesself) and iridologist (heals through what the eyes tell). Wouldn't hurt. I use both to remain balanced as a whole and healthy
Honestly I dont know what all I've been exposed to in my life time. I've done various jobs from roofing and mechanic work, to drafting and my current engineering position. I've had hobbies that put me neck deep in swamps, ponds, rivers, lakes, the wooded country, etc.. So who knows.
Not familiar with the above.
I wish there was a doctor I could just go to and say; "test me for every disease or condition ever known to exist".
In recent time I've tried to get someone to take a needle and withdraw some of the fluid from the "puffy" tissue below my knee and at least look at it or do some sort of analaysis on it. To me swelling means something.
You havnt been exposed to malaria or anything like that have u? Have u tried holistic care from a foot zoner or iridologist? I'm so sorry ur having undiagnosed serious illnesses!!!!
How frustrating. I am sorry. As far as your magnesium level goes, that just means that "normal" range is 1.6 to 2.6. If yours was 2.4 then it is within the normal range.
I also have concerns about Lyme disease.