Undiagnosed circle of hell.

Splendour

Hey dlofnep, does Patrick use the hair or urine for mercury testing?

dlofnep

Urine. I took a urine sample on an empty stomach. Then I took DMSA (a chelating agent), and took another urine sample 4 hours later. From what I've read, these appears to be the preferred method.

Splendour

dlofnep wrote: »

For anyone thinking about mercury toxicity - I'd say to just wait on me if you like, and I will give you an honest assessment in 6 months from now, and then 6 months after that. I will have my mercury toxicity results next week hopefully, so I'll be happy to share them with you.

Allow me to be the test subject for this. If I find that it benefits me, I will go forward to the media and highlight the issue.

Unfortunately, it's not a case of 'one size fits all' with this stuff. I recently heard from a girl who had it done and she thinks it may have been her cure and I spoke with a guy just this morning who had it done last year and he doesn't feel much different.
I really really hope it works out for you though-or anyone else for that matter!

Have you read about Terry Pratchett on mercury fillings? He blames them on his Alzheimers's disease. http://www.guardian.co.uk/lifeandstyle/2009/feb/15/mercury-fillings-alzheimers

dlofnep

Yes. I've read a number of reports on it. I was actually just reading another one there about the parents of a young boy who had it, they put him on mercury detox and they saw an astonishing improvement.

There is certainly anecdotal evidence out there - we just need to get more cases, and highlight these cases.

Splendour

dlofnep wrote: »

There is certainly anecdotal evidence out there - we just need to get more cases, and highlight these cases.

Absolutely!

dlofnep

I wonder if we could organise some sort of support group in Ireland - for people to meet up and share their concerns with each other.

Splendour

dlofnep wrote: »

I wonder if we could organise some sort of support group in Ireland - for people to meet up and share their concerns with each other.

I would love to do this at some stage but my health is so bad lately, I can't do much of anything.

dlofnep

I'm very sorry. My health isn't great either, but I would like to have somewhere for people to vent and learn from each other. I'll keep it on the backburner for now. I'll see how I progress.

TrollHammaren

dlofnep wrote: »

I wonder if we could organise some sort of support group in Ireland - for people to meet up and share their concerns with each other.

My girlfriend's mother is, as far as I understand it (her English isnt great), a healthcare manager in charge of helping people set up support groups in Germany. It's obviously going to be a little different in Ireland, but Ill ask her about how a person would go about establishing something like this. I'll let you know what she says.

dlofnep

Thanks!

condra

dlofnep wrote: »

I wonder if we could organise some sort of support group in Ireland - for people to meet up and share their concerns with each other.

I like your idea about the support group. I'm sure there are support groups out there for things like ME/CFS/Fibromyalgia etc, but they don't seem to have much presence here on boards.

I especially like the idea of having a get together for people with chronic fatigue and unexplained illness.

I've been meaning to get in touch with Tom Kindlon from The Irish ME Association and Lois Davies who runs this yahoo group here:
http://health.groups.yahoo.com/group/mechat-ireland/
The yahoo group is fairly quiet lately, and the structure is a bit antiquated.

I often wonder how they would feel about the idea of creating a new and better forum, or indeed porting the community over to boards.ie (somehow, if it were allowed)

..

sleepygirl1975 wrote: »

How did it go in Drummartin clinic dlofnep? Condra when are you going? I was there in 2009. For 180 euro a pop, all I got was a lot of quackery and ego.

DMcG is definitely an interesting character, and indeed he does practice some alternative treatments as well as conventional ones. Still, he seems to be very proactive when it comes to getting a lot of tests done, which I believe most people with chronic illness are only happy to do.

Longerview

Dlofnep, have you ever looked at the wrongdiagnosis.com site ? Its really good. You can use the symptom sorter to list one of your symptoms and then refine the search by adding a 2nd and even a third symptom. There are thousands of conditions listed and it might be boring but worthwhile to work your way through a list matching your symptoms. Also there is a misdiagnosis section. You might find a clue there.

dlofnep

Terrible brainfog today. Was fine this morning. Had some food and it's really come on strong now. Ugh..

cltt97

What did you eat?

dlofnep

I can't remember. I think I had some gluten free cheese crackers, some eggs and some tic tacs.

cltt97

you should keep a food diary. Could there have been yeast in the crackers? Maybe there is something in these gluten free products that makes you feel tired? A lot of them have soya or tapioca, rice flour, maize starch and all sorts of things in them. I think you might benefit from writing these things down and see if there is any correlation.

MASTER...of the bra

Upstream wrote: »

Do you keep a diary for your illness?
Possible things to record may be:
How you're feeling each day, on a scale of one to ten.
Any medication
Diet
Physical activity (excercise, swiming, relaxing)
Mental activity (even things like how much time you spend on boards:eek::))
Anything else you can think of that might have an effect

A rigorous diary (with a score system) might help. As you review it over the coming weeks and months, you may see some patterns emerging, where some activities have a positive effect for you and some have a negative effect. Even if it doesn't identify a main factor, it might be a help in eliminating small factors that aggravate things for you, or finding things that really help.

Best of luck,
Upstream

Suggested before.

Splendour

dlofnep wrote: »

I can't remember. I think I had some gluten free cheese crackers, some eggs and some tic tacs.

Have you checked the Tic Tac ingredients? Glucose fructose which is used as a sweetener can be wheat derived.
Mind you, I'm gluten'dairy free, extremely cautious with what I eat and still manage to be brain fogged 90% of the time!!

LegacyUser

Dlofnep

Did you start or stop chelators the day or so you got the brain fog ?

Could be redistribution

dlofnep

Splendour wrote: »

Have you checked the Tic Tac ingredients? Glucose fructose which is used as a sweetener can be wheat derived.
Mind you, I'm gluten'dairy free, extremely cautious with what I eat and still manage to be brain fogged 90% of the time!!

Is Glucose Fructose really wheat derived? Cos I often drink blueberry juice which has it.

opinion guy

dlofnep wrote: »

Is Glucose Fructose really wheat derived? Cos I often drink blueberry juice which has it.

I thought it was corn derived. (High fructose corn syrup)
http://en.wikipedia.org/wiki/High-fructose_corn_syrup

Splendour

From what I've been reading, most of it is derived from corn but it can come from wheat too.

newbie4

what is brain fog. Can some describe the feeling. I am not familar with the phrase

Has anyone come out the other side of these conditions feeling better

Dlofnep have you tried a food exclusion diet. Dr Joe Fitzgibon in galway clinic, didnt show anything for me but it might help.

dlofnep

newbie4 wrote: »

what is brain fog. Can some describe the feeling. I am not familar with the phrase

Inability to concentrate on even the most basic things.. Your brain feels 'foggy'. I suppose I could kind say it's like being stoned, but without the benefits of being relaxed and calm. Your brain just feels off as if it's not working. I feel like my brain is working at about 30% of what it should be.

newbie4 wrote: »

Dlofnep have you tried a food exclusion diet. Dr Joe Fitzgibon in galway clinic, didnt show anything for me but it might help.

Yes I have, it won't cure me. I pretty much know what I can eat, and what I can't. It's not an issue with food. Food will only trigger certain things - but I always feel ill regardless.

newbie4

dlofnep wrote: »

Inability to concentrate on even the most basic things.. Your brain feels 'foggy'. I suppose I could kind say it's like being stoned, but without the benefits of being relaxed and calm. Your brain just feels off as if it's not working. I feel like my brain is working at about 30% of what it should be.



Yes I have, it won't cure me. I pretty much know what I can eat, and what I can't. It's not an issue with food. Food will only trigger certain things - but I always feel ill regardless.

I am the same, I do not think it is food either. And i have this brain fog
But i have had some serious trouble. Had some bowel removed last year (near killed me not a nice place to be).
The year before I had my apendix removed. But after I had it removed WOW!!!! the difference was unreal. was on top of the world, could do anything but after a few months back to the same thing

Have you tried tripple therapy for that stomach bacteria

Have a professor in UCHG doing some scopes on me soon, (this will be my third) hoping this will help, but public health in on the ropes (he gets 60 requests for help a week, simply cant cope. But he did sympathise with me

If i had to gues what is wrong i would say that my system is letting something into my blood that it shouldnt

I knew i wasnt unique but how do we get answers

I feel for you on the work thing, I am selfemployed in construction, If i was working for someone I would have been fired 2 years ago

dlofnep

Newbie, do you have mercury fillings out of curiosity? I'm actually getting a camera to check everything out, just waiting on the appointment.

newbie4

dlofnep wrote: »

Newbie, do you have mercury fillings out of curiosity? I'm actually getting a camera to check everything out, just waiting on the appointment.

Thats the thing I have no fillings at all

I have had two scopes both showing mild diverticulatius (not sure on spelling) but went to hospital with preforated diveticular disease. both things are unheard of in young people, its mainly in the old. One doctor sugested it could be a few things wrong.:mad:

dlofnep

Sorry dude

cltt97

Just getting back to this book by Dr McKenna I've mentioned already - he does go on about two conditions in particular - gut fermentation and dysbiosis - which can cause all of what you're describing (including leaky gut and diverticulitis) and has nothing to do with food sensitivity, but with the state of your digestive system, so food exclusion diets and allergy tests won't do it - it's all about repairing the gut lining and getting the intestinal flora working again, I would so suggest you have a read of that book.

dlofnep

Cltt97, I'm going to see a gastrologist very soon here in Waterford Regional Hospital. He may be able to confirm that?