Undiagnosed circle of hell.

dlofnep

Thanks tbh

dlofnep

condra wrote: »

By the way DLOFNEP, I took a leaf out of your book and decided to book an appointment with Drummartin Clinic. I'm going to go with a fairly open mind. I'll make a thread about my experience at some point.

Going back to your story though, and I just wanted to say something about graded excercise etc. My own experience (ME/CFS/Undiagnosed) is that I can do some moderate exercise during a "good patch" - but during a "bad patch" it is completely out of the question. When I'm sick, not only do my weak muscles tire quickly, but my coordination is bad, and movement causes nausea.

I think for many people with unexplained illness, it can be very quickly apparent whether or not exercise helps with their condition. I'm sure it can help with some conditions, but if exercise makes you worse, for goodness sakes get some rest.

Let me know how it goes - I've only submitted my stool sample so far, as I'm waiting to remove my mercury first before I test my levels. I heard that taking chelators with mercury still in your mouth moves more into your body and it's bad for you.

I have that, an adrenal stress profile and a few blood tests. I'll send them all off next week.

kangaroo

(This was longer than I initially intended - apologies - I kept editing it and adding bits - anyway people don't have to read it)

condra wrote: »

By the way DLOFNEP, I took a leaf out of your book and decided to book an appointment with Drummartin Clinic. I'm going to go with a fairly open mind. I'll make a thread about my experience at some point.

Going back to your story though, and I just wanted to say something about graded excercise etc. My own experience (ME/CFS/Undiagnosed) is that I can do some moderate exercise during a "good patch" - but during a "bad patch" it is completely out of the question. When I'm sick, not only do my weak muscles tire quickly, but my coordination is bad, and movement causes nausea.

I think for many people with unexplained illness, it can be very quickly apparent whether or not exercise helps with their condition. I'm sure it can help with some conditions, but if exercise makes you worse, for goodness sakes get some rest.

Just to clarify in my case: it wasn't clear-cut how things were going for many months when I was in my year out from college: I was no longer studying so actually felt I had more physical energy. Some of the muscle type problems I had had for years e.g. a stiff neck and a sore biceps, were much eased (probably because I wasn't using those muscles as much from studying/working at a computer and also not carrying a heavy bag around).

I was enjoying having a healthy social-life, having for years previously having to ration my energy for social activities very tightly trying to study full-time on top of ill-health (a lot of people with ME/CFS can have that - if they're not working they can feel reasonably well and may even consider themselves nearly recovered; their limitations only hit them when they then go back to work/study). There were signs there e.g. sore throat for a lot of the year. For the first part of the year, I didn't exercise when I had a sore throat. However as the year went on and I was panicking that I wasn't getting better, I sometimes exercised when I did have some symptoms - I thought the sore throat couldn't represent much - perhaps I was just talking too much/had strained my throat - as I had it so much of the time, it got worse as the day went on and I had had antibiotics.

Anyway just saying that things aren't always as clear-cut as they may seem and explaining how somebody could deteriorate as people might wonder how it could happen*. What I did may sound silly but if everyone (individual professionals and the media in general) tells you exercise is good and healthy, there is a bit of an attitude hanging around that you don't push yourself as hard as you could, and you really want to get better, there is a temptation to keep exercising rather than taking it easy which doesn't seem as proactive especially if you have been trying to build up your exercise and it seems like that will be wasted by stopping.

There has been actually lots of interesting research done on the abnormalities that show up in exercise in ME/CFS - a lot of them show up in the period (e.g. 24 hours) after the exercise (rather than simply when it is being done). Hopefully this knowledge will transfer to more practical knowledge in time and also some of the "easy" diagnostic kits that are available for some conditions, are developed for ME/CFS so there are fewer people in "no man's land." Studies in the US suggest only a fraction of the people affected have been diagnosed.

Anyway, I don't want to drag this off-topic but when I saw:

I've started swimming also to help me at least get my fitness levels up. It can't be good to sit at home all day and do nothing - if I am to fight this, I have to be as fit as I can.

I wanted to share my experience that such an approach could lead to a deterioration not improvement in some people. Negative responses to exercise aren't collected centrally the way they are with drug adverse reactions and if people are undiagnosed, they are unlikely to tap into knowledge to be careful. I know lots of people with ME/CFS (myself included) who wish we had been told to rest more earlier (this will often be in the period when people were undiagnosed).

Anyway, a practical tip to track one's level of functioning over time is to use a pedometer/actometer.

*other people's reasons may even seem more sensible e.g. they relapsed one day having pushed themselves and then after the symptoms subsided, they were only able to maintain a lower level of functioning before triggering symptoms - that happened to me with my big relapse and happens to others

dlofnep

Got real heavy brain fog last night, still have the remnants of it today. I ate alot of gluten free bread yesterday - it tends to clog me up. Felt horrible last night

Gunna go for a swim & sauna later to try and refresh myself.

cltt97

Was there yeast in this bread? I find things with yeast are really bad...

dlofnep

Yes there was. I'm thinking yeast is a real no-no. I say this as someone who has a book on his shelf titled Chronic Fatigue & The Yeast Connection. You'd think I'd know better.

I feel refreshed tonight. Had a bath, a shave and a nice floss & brush of the mouth. Downed a pint of ice cold water with vitimin C. Feeling good! Brain fog isn't too bad now. Had some waffles & peas a bit earlier and some rice cakes. Didn't want to risk anymore of that bread.

I'm perplexed at how good I can feel one day, and the next feel like hell is calling me. There is absolutely a trigger.

Upstream

Hi dlofnep,

Had a quick read through this thread. You seem to be taking lots of proactive steps to get to the root of the problem, so fingers crossed you get the better soon.

Here's something that may be of use in the mean time.
I attended a talk on pain management once. It was for people with a particular long term illness where one of the side effects was chronic pain. Medication was not always a help, in some cases it was no help at all.

I remember the doctors suggested people kept a pain diary.

She said to include things like:
What their pain was that day, on a scale of one to ten.
What medications they were on.
What activities they did. ( a common problem was people pushing themselves too hard if they were having a good day)
Even what the weather was like (cold weather was an aggravating factor for many, so making sure to wrap up warm in cold weather could be a big help for them)

Her point was, even if they couldn't eliminate their pain altogether, the diary helped put them in control of things.

I know it must be very disheartening to be feeling fine one day, and awful the next, and not know the reason for it.

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

newbie4

Help me please
I have felt run down for a number of years

I has got worse in the last few years
I have bowel trouble

I have been felling rundown for over two years but didnt want to do anything about it, but then it came to a head, i ended up in A&E in a lot of pain in the abdomen. In short appendix taken out. Recovery went well, energy levels soared felt on top of the world. But as the weeks went by back came the lack of energy headake, nausia, bowel movements all over the place. Went for scopes showed mild diverticular diseas ( i am 30) Go away you will be fine eat lots of fiber(conversation with doctor and nurse was comical if it were not so serious they as good as told me to go away and dont come back) Back in A&E, admited to hospital again 2 weeks on antibiotic drip. sent home again another scope, same result. a few month later back in A&E, CT scan preforated. diverticular disease. (Had piece of bowel removed(not nice) 4 month passed am as bad again. Head ache nausia pain, oh I also smell like a sewer. Had antibotics and smell went away. now waiting for scope up and down the way. I need help, have also been to various allergy clinic (Joe Fitzgibbon would recommend him he at least listen but could not find allergy, was tring (candida infection when i went with preforated diverticular diseas). Am sitting hear hoping if you or anyone can help me am at wits end and finding hard to work and as i am selfemployed things are hard enough.
look forward to responce

cltt97

dlofnep, I think diet is a big one for you. I think I'm not very good with yeast either, so I avoid it like the plague. Difficult when you're on a gluten free diet and have to avoid yeast as well... I find Odlum's brown bread mix in the gluten free section the business. It's really good (all the gluten-free bread one can buy is vile!), very easy to make, and I add lots of seeds (sesame, sunflower, flax, pumpkin an fennel). It tastes fantastic, it does absolutely no harm to my digestion or energy and if anything I think it helps with my digestion. It has no yeast, so it's perfect. I also take a lot of acidophilus.

Newbie4 - I would recommend that for you, too, the acidophilus. With all the antibiotics I'd say your intestinal flora is totally shot! I have also read/seen on tele that it sometimes works quite well for IBS (as does yoga, pilates, meditation and hypnotherapy). But in any case, I would suggest you start a different thread, as this is dlofneps story here and you'll probably get more help/responses if you start your own.

One more thing, I remembered someone mentioning this Doctor in Naas who specialises in digestive problems. I had to google him, he's John McKenna and there is some info on him in this discussion forum and he also has a book - been wanting to buy this myself for sometime, but haven't gotten round to it yet. but just to clarify I don't know this Doctor and only read a recommendation for him on this board and just found some more on him on the other forum after googling him.

dlofnep

I'll check it out, thanks! I've never made bread before, so I'll have to look into it.

MASTER...of the bra

dlofnep wrote: »

I'll check it out, thanks! I've never made bread before, so I'll have to look into it.

It's actually pretty handy, Odlums gluten free flour in Dunnes bit pricey €6 (the pink one) but lasts a good while, mix linwoods organic flaxseed in with the mix (any of their range actually) you can get this in dunnes aswell. There's a few other grains you can get aswell, millet and Quinoa, in the health shops to throw in aswell.

Newbie4, try the Candida diet, thrush can take over and have alot of symptoms if it gets a hold, get a good quality probiotic. May be no harm for you dlofnep to try either. Give it at least 8 wks if you can along with upstreams post above.

LegacyUser

newbie4 wrote: »

Help me please
...................
look forward to responce

Sorry to hear about your poor health. I suggest you make a new thread. You will get more responses in a unique thread as we are all kinda focused in on dlofneps condition here.

cltt97

It's dead easy to make this bread. You just mix the flour with water and some oil and add whatever you want, leave it sit for about half an hour, then pour into a bread tin and into the oven for 35 minutes and voila. No kneading or anything strange. All you need is weighing scales, a mixer and a bread tin. It's seriously good. And adding all the seeds it a dandy way to introduce roughage and good fats (flax seed is rich in omega 3), into the diet.

dlofnep

I have a weighing scales, I'll buy a mixer and a bread tin. I'm terrible at cooking, that's why I always bought the loafs. I'll get all the stuff next week for shopping, thanks

Splendour

cltt97 wrote: »

It's dead easy to make this bread. You just mix the flour with water and some oil and add whatever you want, leave it sit for about half an hour, then pour into a bread tin and into the oven for 35 minutes and voila. No kneading or anything strange. All you need is weighing scales, a mixer and a bread tin. It's seriously good. And adding all the seeds it a dandy way to introduce roughage and good fats (flax seed is rich in omega 3), into the diet.

Hey cltt97, do you know if this mix contains dairy as I'd love to try this bread but as well as being off gluten, I'm off dairy too.

cltt97

I'm sorry to say it does contain milk powder.... I was off dairy for ages, too, but I did not notice any difference at all, so semi went back on it (still not drinking any milk, but have the occasional bit of cheese or yoghurt and don't worry about milk powder and things like that anymore). It's a nightmare of a diet...

cltt97

dlofnep, get some fennel seed (in the herb and spice section), and add about a teaspoon and a good pinch of salt, totally makes it! (and whatever seeds you like - I probably add a good big tablespoon each of 4 different types of seeds). and if the mix seems to get a bit too sticky (with all the seeds), just add an extra little bit of water.

Splendour

Pity, as can't master GF bread at all. Cakes no problem but haven't made a decent bread yet. Tesco sell nice brown rolls but be nice to have a choice.
I found the GF & DF a bit of a nightmare at first but tbh, am used to it now and it doesn't bother me so much now-although I miss putting a bit of cheese in my quiche. The biggest problem with any of these diets is the hidden ingredients. Am sick of reading food labels!!

_Whimsical_

There is a GF bread on sale in Teco, Dunnes and Supervalue called Genius and it is delicious! It's every bit as nice as "real" bread. It's expensive but if you miss your bread its definitely worth the occasional splurge.

newbie4

But in any case, I would suggest you start a different thread, as this is dlofneps story here and you'll probably get more help/responses if you start your own.

how do i start a new thread am new here
any pointers about dos and donts
much apreciated

dlofnep

_Whimsical_ wrote: »

There is a GF bread on sale in Teco, Dunnes and Supervalue called Genius and it is delicious! It's every bit as nice as "real" bread. It's expensive but if you miss your bread its definitely worth the occasional splurge.

I have genius bread. It's lovely, but has yeast and I tend to react from it.

dlofnep

cltt97 wrote: »

dlofnep, get some fennel seed (in the herb and spice section), and add about a teaspoon and a good pinch of salt, totally makes it! (and whatever seeds you like - I probably add a good big tablespoon each of 4 different types of seeds). and if the mix seems to get a bit too sticky (with all the seeds), just add an extra little bit of water.

Sounds the job, I shall document my first bread making experiment next week!

dlofnep

All fillings replaced

Detox begins monday after I send off my mercury levels. I'll re-test in 6 months and see how much they have lowered.

dlofnep

Mercury toxicity urine samples sent off this morning. I'll be keen to see what the levels are like - if for anything, to have a benchmark to lower my levels against in 6 months from now. This is where the fight begins.

condra

Good luck with all that. I hope your health improves, but I also hope you haven't invested too much hope in the fillings being the root of your problems.

After 9 years of this bull**** health, I've learned not to put too much hope or faith in anything.

Tags

dlofnep, been reading through the thread here and it seems you've had a really sh!t time with this. Hope this is the beginning of the end now

LegacyUser

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.

Splendour

condra wrote: »

Good luck with all that. I hope your health improves, but I also hope you haven't invested too much hope in the fillings being the root of your problems.

After 9 years of this bull**** health, I've learned not to put too much hope or faith in anything.

Out of sheer desperation I've been thinking of going down the mercury removal road too-only I can't afford it! I understand what you're saying though-everytime I read or hear of some possible new 'cure', I get all excited only to be let down yet again.
Hopefully, the mercury removal road will be the right one for dlofnep!

dlofnep

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.

I've only submitted 2 lab tests so far - mercury toxicity today, and stool sample for parasite test. I need to send on some blood work, and a adrenal stress profile test.

I'll head back up then and see what the crack is. I'm also getting my stomach and that checked out in the local hospital here, my GP referred me as I often have problems with constipation and stomach pain if I eat dairy - which might indicated an ulcer, and then some.

I still believe that mercury is the root cause of my problem, as I only became ill since I got my fillings in and was perfectly fine before them. I'm very certain about the timeframe that I became ill because at the time, my mother said to me that I had only been ill since visiting the dentist. (This was about a month or two afterwards) - My health seemed to gradually decline since then.

My diet seems to lessen or worsen symptoms, but they are always present. Some studies I've read have suggested that mercury toxicity can lead to candida symptoms. Since yeast and gluten is a huge trigger for me - this makes sense. A study by Dr. J. Trowbridge saw that 98% of clients who had candida symptoms, also were toxic with mercury.

In anycase, I think all these areas (gut, colon, heavy metals) need to be tested, as I have covered every possible other area. Everything.

dlofnep

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.