totally frustrating and painful with no real diagnosis! thougt they would be able to find something at least...?
can't really encourage you either way - live or die - we're in this situation where we're not dead but we're not really alive either. sometimes we would rather be dead - for sure!
i have never been able to tell when the end would be - a day, a week, five years - it sometimes felt like i would be done in a day, or i would still be here for my 95th year still miserable. anyway, it's largely regrettable, it's out of our hands, i sense you have some
peace with the prospect of dying, i guess i got a lot of relief when i let go of some of the need to know everything, about the disease, when it would improve, what if i didn't, etc etc, i just knew that i didn't know, and would have to go with it. this would sound strange to a well person, but it's a good thing that you haven't put lots of hope and expectation into your next batch of tests - it's not the be-all and end-all of your journey, a lot of the healing is in the acceptance of the big picture of the processes of the disease(s).
best wishes
incidentally it sounds like some sort of industrial poisoning to me, at a glance
Yes, at this stage I just want the pain and odd symptoms to be gone. I've wondered the same thing about poisioning, or something really out there. All of this started about 2 months after I had a tooth filled with a rather large filling. Have read that there is some evidence to support that dental work can cause issues (mercury poisoning) But from what I hear there is no way to test for this or doctors dont want to test because its "grasping at straws". I think if I could just get someone to listen instead of blaming it on depression or fibro, etc that this just might be treatable. At this stage though I dont know that it would do any good. It could be that so much internal damage is done that there is no way to reverse things.
A while back another member (shells17) posted similar symptoms (veins) as mine and I cant help but wonder if this is really some new disease that they simply dont know how to deal with yet.
I find it intertesting that they ran tv comercials for Zelnorm during the same time I was dealing with digestive issues, and in recent times they run ads for RA and fibromyalgia drugs. It's almost as if this stuff is following some sort of time line.
Maybe it means nothing. All I do know is that none of the autoimmune disorders list anything to do with vein failure yet here I have it.
The fact that there are others out there with vein symptoms who have been diagnosed with fibro raises some questions
The muscle pain, insomnia, depression, etc. could be a magnesium deficiency.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2146789/pdf/canfamphys00077-0094.pdf
Some of the safer and more effective forms of magnesium include: Taurate, Glycinate, and Citrate (latter can be laxitative, so take with food).
I suggest you also look online for a highly absorbable, high dose, high nutrient, multi-mineral & multi-vitamin, supplement. Something with many good testimonial reviews.
Humm worth looking into I guess. Just wish the list of possibles were not so long, and I wish there were tests to confirm or rule out. The next step is getting a doctor to go along with it.
I've yet to meet a doctor with a problem with taking a multi-vitamin and the same with magnesium.
I had similar problems and could not figure it out and it ended up being Lyme Disease. Please get tested for Lyme by a Lyme Literate MD.
My labcorp test for lyme came back negative. They did a Lyme Ab, western blot reflex IgG IgM Ab although they didn't actually put the value on the test report.
The result was listed at <0.91
To me that doesn't mean a whole lot. It could have been 0.01 , 0.90 or anywhere in between.
I've asked all of the doctors about this and they all dismiss Lyme as even possible. My PCP told me that no one anywhere around has Lyme. Mayo doc said the same. The Lyme concern remains on my mind, just as every other possible that no one will test for or has a way to test for. Very frustrating.
After much reading about LLMD's I tried to find one through Ilads. No luck. Any in the list within 200 miles of me wouldn't call me back or told me they didn't have a office.
Got the Igenex test kit several weeks ago, but haven't done anything with it. I think I could talk my doc into drawing the blood and signing the form but from what I read the test is basically the same as what labcorp did.
On top of that many seem to think the Lyme tests are accurate. If thats the case how can doctors go by them? Sort of like those that go by the ANA results. My dermatologist told me that the skin problems I was having were seborheia. "if your ANA is negative you CAN NOT have lupus" his words... yet I read that ANA tests are not 100% accurate.
What a fiasco.
I guess if it comes down to it I could obtain some keflex and amoxicillin from outside the normal medical routes and tank up on them. Legal or not it's not like I have a lot to loose.
I looked back over my lab report and my Magnesium, Serum level was 2.4 mg/dl range was listed at 1.6 - 2.6 Dont know if that really means anything though..
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.
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!!!!
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.
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
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?
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?
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.
extracting the tooth sounds extreme... is it possible to have the filling removed and replaced?
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?
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.
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.
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.
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.
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.
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
curezone helped me figure out the prblem,no doctor will