Undiagnosed circle of hell.

dlofnep

Also, I'd just like to add - I'm really on my last legs in work. I can't afford to lose my job. they are going to pay for me to see the company doctor which is good - but it will really only be good if he listens to me and is open minded. If it's just another "take 2 disprins and get some sleep" kind of doctors, he need not waste my time.

I'm worried about what will happen if I lose my job because of sick days. If I don't have a diagnosis, can I still avail of disability allowance? I don't want to go on it - but I will need assistance if I can't recover soon enough. It's been 5 years now, and I've toughed it out too long. I'm on my final written warning from work - so I feel if I have one more sickday (which is almost inevitable) - I'll be canned.

It's really hard coming into work when I'm feeling awful, but I'm stuck in such a horrid situation where I have bills and can't pay for them without a job. Does anyone have any advice in that regard?

TrollHammaren

Hey OP, thanks for updating, it's good to hear from you again.

Did you go down the road I mentioned earlier? I mean filling out the disability allowance application form with a doctor's note detailing that you are showing definite symptoms of an underlying illness but that you haven't been diagnosed with anything. I'm sure you wouldn't be the first person to have a debilitating illness that hasn't gotten a formal diagnosis.

As I said before, these things aren't set in stone, so I would recommend getting a letter from your doctor, filling out the disability allowance application form, and see if they'll accept it. If it's rejected, you can request a meeting with the local welfare offices and explain your circumstances. Although it's not the same thing, I had problem with my orphan's allowance but was able to secure it in the end.

It's definitely worth checking out.

dlofnep

Heya - I didn't pop into them yet, as I've trying to stay positive and work on keeping my job. I didn't want to admit defeat just yet - but it's getting to the point where one more sickday and I'm probably out the door. It's sad too really as I've been here 7 and a half years.

I will pop in and get the form tomorrow, just to have as a backup. I think that if I am going to be in and out of work on a routine basis, it's not fair to me and it's not fair to the company. I'd rather not part on bad terms, as if I get better and ever need a job again - I wouldn't like to have a bad reference.

tbh

Keep fighting buddy, we're all pulling for ya.

dlofnep

Thanks tbh Really appreciate the support.

cltt97

Have you ever been tested for lactose intolerance? I think if you're having such good success by cutting out certain foods, you should definitely try a serious elimination diet. But sounds like you're doing everything possible to get to the bottom of this, hopefully you'll get to it real soon. Fingers crossed!

dlofnep

It may or may not be an issue, but if it is - it's a very minor one - as I was dairy-free for 2 years solid, and still saw heavy symptoms. Dairy causes my tummy to be upset, but nothing beyond that. I'm staying away from it again.

dlofnep

Started a new diet last night. Feeling decent enough today. No brain fog, and no strong symptoms. Chicken, eggs & veg for dinner. I have some chicken left over for later on, that I'll have with some more veg with some rice-cakes and fruit for snacks.

Debating on whether or not to eat yoghurt for my digestive system. Perhaps a live natural yoghurt, without sugars. Don't want to go near dairy though, so not sure if the pros will outweigh the cons.

Drinking only fresh water - so no soft drinks. Going to stay alcohol free all this week. Will try stick to this diet. Felt really horrible the past 2 days - so I want to try have a clear mind and see if I can be as healthy as possible for this week.

I have a dentist appointment this Friday for a composite filling - However, I am worried that the small amalgam removal might poison me further if it is indeed mercury poison that I am suffering for. I will discuss it with my dentist, and I'm researching what sort of supplements to take prior to the removal.

LegacyUser

dlofnep good to see you have posted.

In relation to your teeth and amalgam fillings make sure you get a dentist that specializes in amalgam removal, there is a certain protocol when doing so. It was one of the things i tried but unfortunately it didn't do anything to relieve my symptoms. I was fully sure my illness was down to my fillings as i had quite a few and the way i feel is as what i would imagine it would be like to be poisoned. Some people do see an improvement but all it did for me was burn a nice hole in my pocket and left some teeth very sensitive. I don't regret it however because i would have done it at some stage or another. I have read some people mention root canals as a possible cause ( i have one root canal)but once again there is no solid proof and i don't want to spend anymore money on anything unproven that could cause more upset.

Your right to stick to a clean a diet as possible it should help with some symptoms. I try to avoid alcohol, tea & coffee, refined carbohydrates , sugars etc basically all the nice things but it can imrove some symtoms a bit. It doesn't make me feel great but my bowel is less irritated and i don't tend to crash as heavy. Having said that i do get down and eat loads of crap now and then just out of pure frustration and the lack of any significant improvement.

Was out to get some groceries today and got incredibly weak in the shop. Had to leave all my shopping there and just walk out and sit in the car until i could muster up the strenght to go in and pay. Was up with my Doc today too, having more bloods done and have to go back into hospital for more tests, which i can't see them finding anything AGAIN ... ... ...

Im inclined to go with William Weirs thoughts that it's the immune system that causes all the CFS symptoms. I've been down so many roads with no answer.

dlofnep

RE: Mercury - Did you get your mercury levels tested, and take DMSA on a routine basis to remove it from your system? It's not enough to have the amalgam removed. I'd be interested to hear how you got on. I'm going to talk to the dentist and explain my worries, if I have hesitations - I will just get a composite filling done for one tooth with her, and go to a dentist in kilkenny that specialises in removal.

Regarding getting weak - that happens me alot, I get really faint and weak - But it's usually only after drinking lucozade. If I drink lucozade, I can be guaranteed that within 2 hours I'll become faint.

Feeling a little bit off now at the moment. Very mild nausea, and very mild brain fog. Nothing too major. Will see how I feel later. I'm not expecting to feel wonderful straight away with a strict diet change. I feel better than I was yesterday in anycase, so that's a start.

LegacyUser

hi dlofnep

Regarding mercury, I want to share some information.
The first thing to say is the blood and urine mercury levels are useless for diagnosing chronic mercury toxicity - check any reference book it will confirm this.
The second thing is taking chelators is not a simple risk free process. There is a danger of something called 'redistribution'. In other words the chelators can stir up mercury in the body and it can move around the body and potentially make things worse (turns out chelators are poorly effective - they only remove a small percentage of mercury with each dose).
Now not all doc's who use chelators 'believe in' redistribution. My advise is before starting chelators ask your doc about redistribution - if he says it doesn't exist - walk away.
The good news is you can minimise the chances of redistribution by changing the dosing, dosing times and schedules. The bad news is its tricky and complicated and most docs know nothing about it.

I recommended you check out a guy called Andy Cutler who is a PhD chemist and has several books on the subject.

You can also find more information and people’s stories on some yahoo groups including:
http://health.groups.yahoo.com/group/adult-metal-chelation/
http://health.groups.yahoo.com/group/frequent-dose-chelation/

Whatever you do if you do get diagnosed with mercury do your homework first before taking any chelators. Read everything about it. I don't know what your background is but if you have biochemical knowledge it will definitely help. Quiz your doctors. I personally attended one of the 'chelation clinics' mentioned previously in this thread and they f**ked me up good and proper (note this was not the clinic you have attended - but ask the guy about redistribution and ask him about Andy Cutler's frequent dose chelation protocol - if you are not happy with answers walk away)

Also are you sure its mercury - think about your exposure risks - how many amalgams youg ot ? did they make a mess putting them in ? Ever broken any thermometers ? Played with mercury as a kid (sosooooooooo many people seemed to do this!) do you eat alot of tuna ? (if you do STOP, NOW)


Anyhow - good luck with it!

cltt97

If it's the lactose in dairy that causes you upset you're less likely to suffer symptoms from yoghurt (i.e. fermented), but if it's dairy protein then the yoghurt will upset you as well. For the purpose you mention I would recommend acidophilus or acidophilus/bifidus tablets. Also, if you're taking a chelating agent, be aware that it will also bind useful elements, not only Hg, so this is something that should only be done under supervision and you may have to supplement certain nutrients and vitamins. Chelation therapy is not something to be taken lightly. Is it lucozade specifically that makes you faint, or what type of lucozade? Does this happen with other soft drinks or sweet things also? In this case it might be due to hypoglycaemia, could be due to insulin resistance. Of course these are all just "wild guesses" but may be worth looking into. In any case, I would suggest that you try to stay away from all processed and refined foods, maybe limit your carb intake a bit (especially the refined types, so no white bread/cakes/pasta, white rice, white sugar) and try to eat frequently, things like nuts and seeds, these are high in protein and full of good fats, so a good sustained energy source.

dlofnep

It's lucozade specifically - the original, fizzy bottle.

I'm aware of the issues surround chelation. I understand that it's too risky to take a chelating agent while I still have fillings as it may pull more mercury into my system. I will consult my dentist this week and see what happens.

LegacyUser

dlofnep wrote: »

It's lucozade specifically - the original, fizzy bottle.

I'm aware of the issues surround chelation. I understand that it's too risky to take a chelating agent while I still have fillings as it may pull more mercury into my system. I will consult my dentist this week and see what happens.

Indeed not taking chelators with fillings in is a point I forgot to make. But redistribution can occur even if you don't have fillings in. Its an inherent part of the process of chelation

LegacyUser

In relation to the disability allowance:

I am in a similar situation and had to give up work. I am on Illness benefit and have no diagnosis. I explained the situation to my GP and she puts down 'Viral Illness' on the form. Sometimes she writes 'Query Neurological Symptoms'. So I don't think the diagnosis is that important, its more that you have been deemed unfit to work by a Doctor. You then collect a cert from the doctor once a week, the doctor shouldn't charge you - the receptionist will generally have it ready.
Tha benefit amount is calculated in relation to your tax credits for 2009. Mine works out at €188 per week - the same as the dole. You can then apply for the medical card which should help with medical costs.

At first I felt incredibly defeatist for giving up work and it seemed incomprehendible how much my life changed in my early twenties. Many times I also have the 'if i don't get better then I will call it a day' thoughts. But sometimes you just have to be, that doesn't mean accepting the situation fully, or giving up hope. It just means that you acknowledge that you are sick right now and your body and mind deserves rest.
I have every intention of getting better. It is hard to be patient and you can't help but wish for that magic bullet. The lack of understanding from others can also be hard to deal with. Sometimes I envy those who have a clear diagnosis.

Anyway I am going to see an alternative therapist next week who's praises I have heard from many people. I will let you know how it goes. Best of luck.

sam34

sam34 wrote: »

ok, could people ease up on throwing potential diagnoses out there please.

sam34 wrote: »

ok, again, can people PLEASE steer clear of suggesting/ruling out potential diagnoses

sam34 wrote: »

splendour, as has been posted before in the thread, please do not make any sort of attempt at diagnosis. this includes "it sounds like...."

cltt97 wrote: »

In this case it might be due to hypoglycaemia, could be due to insulin resistance.

for the fourth time, could people PLEASE steer clear of suggesting potential diagnoses out there. Nobody here is qualified to suggest any possible diagnosis.

dlofnep

Hi guys,

Quick update. I made an appointment today to have my amalgams removed. It's by a dentist that specializes in removal of them, and takes into account all safety precautions to ensure I do not get further poisoned. I'm going to test my mercury levels after removal, and go on a mercury detox process pending that.

I'm just in the situation where I can't be sitting back and waiting, and need to start making moves.

dlofnep

RE: Ally246, thanks for that. I'm going to pop into the doctors this week to consult regarding disability.

cltt97

Sorry if I appeared to make potential diagnoses, that's why I added that these are wild guesses. I just personally found that other people's experiences and knowledge helped me personally to approach my GP/Endocrinologist with suggestions that ultimately helped me getting better and they themselves would have never thought of it, so although I fully understand that we're not to diagnose anything I thought it may be helpful to suggest things that could be further explored with someone who is qualified to verify or at least consider them. But in any case I won't do it again.

dlofnep

I started the ball rolling today and got 2 fillings replace. 4 more to go (2 minor, 2 major) and then onto the detox process which should take about a year. The dentist seemed very well informed on the health concerns of mercury toxicity, and advised me of the best processes of detoxification. He was very careful during extraction to not expose me to more mercury. I'm very happy with the visit, and he was a gentleman.

His name is <snip> incase anyone ever needs to find someone who practices safe amalgam removals.

I'm going to join up a local gym and start swimming and doing some sauna work. It will get me back in shape, and the sauna is very helpful for removing heavy metals. The future is bright! Feeling positive today.

tightropetom

dlofnep wrote: »

I'm going to join up a local gym and start swimming and doing some sauna work. It will get me back in shape, and the sauna is very helpful for removing heavy metals. The future is bright! Feeling positive today.

That's good to hear. May I make a small (hopefully constructive) suggestion. If you are starting back into an exercise programme, try not to really push yourself hard for the first 3-4 weeks because that will increase risk of attrition/injury, thus may make you feel worse and may make you stop training.

Slow and steady and you'll hopefully do ok!

opinion guy

dlofnep wrote: »

The dentist seemed very well informed on the health concerns of mercury toxicity, and advised me of the best processes of detoxification.

Care to share the details ?

tbh

dlofnep wrote: »

His name is <snip> incase anyone ever needs to find someone who practices safe amalgam removals.

Sorry dude - we don't allow specific practitioners to be mentioned in either a positive or a negative way - has to be that way I'm afraid. Maybe people could PM you?

dlofnep

Sorry about that Yes, PM me if you need the details!

dlofnep

opinion guy wrote: »

Care to share the details ?

Multiple routes really.

One involves routine doses of DMSA, a chelating drug.

Second is a more natural approach, which uses chlorella, cilantro, milk thistle and high antioxidant content drinks like blueberry which naturally flushes out the mercury over time. It's also important to have healthy bowel movements, and to eat sufficient protein.

Sauna sessions are also very beneficial to help flush out mercury.

opinion guy

dlofnep wrote: »

Multiple routes really.

One involves routine doses of DMSA, a chelating drug.

Second is a more natural approach, which uses chlorella, cilantro, milk thistle and high antioxidant content drinks like blueberry which naturally flushes out the mercury over time. It's also important to have healthy bowel movements, and to eat sufficient protein.

Sauna sessions are also very beneficial to help flush out mercury.

Aha I see.
Do keep us posted as to how it is going !
Good luck!

dlofnep

I sure will. I don't expect an immediate recovery. It will be long and arduous, but I'm willing to start taking the first steps.

dlofnep

Got my disability allowance form filled out by my GP today Handing in my notice to work. The time for recovery starts now. Alot of stress off my shoulders. Does anyone know how long it will be before I receive payments?

opinion guy

dlofnep wrote: »

Got my disability allowance form filled out by my GP today Handing in my notice to work. The time for recovery starts now. Alot of stress off my shoulders. Does anyone know how long it will be before I receive payments?

dunno dude but don't hand in your notice until you are sure of what you are getting and when!!!

dlofnep

opinion guy wrote: »

dunno dude but don't hand in your notice until you are sure of what you are getting and when!!!

The form asks if I'm employed or not - Surely if I'm employed I won't qualify, so I have to hand in my notice?