Undiagnosed circle of hell.

username123

peann wrote: »

Going to change my GP too - he just isn't proactive enough. I need someone to be more proactive.

You know this is a good idea just for a fresh pair of eyes to look at you - someone new might have new ideas. Plus - you need a good relationship with your doctor, no point in you going to someone you think isnt helping you.

peann

Have been down with a bug the last while, so haven't been able to get a round of chelation in. Not sure if it's some naggling virus, or candida. I seem to be struggling at the moment - Everytime I find even a small bit of happiness, I fall back into a hole again. I've been considering the idea of euthanasia in Switzerland if I don't find a solution to my problems within the next year.

I'm not sleeping anymore. I wake up from feeling ill, and feel ill all day and tired. I'm trying so hard to get better, I really am. But it's very taxing to go from day to day without a break. 7 years I've been battling this. I've been so patient. I'm going to see a specialist dentist the end of this week to get a digital x-ray to make sure no pieces of filling have been missed (I'm pretty sure that they haven't).

I really want to get back to chelation - but I tried a round the other day and was just too ill to finish it. Only got 3 doses in and had to stop.

I start a course next Tuesday (Cisco CCNA), so hopefully it will keep my mind occupied while I try find a solution to my problems.

In any case - I've been too strong for too long. This is not living. I know so many people are so brave through illness and tough it out - But I really don't see any point to life when I can't do the things I had planned to do. I can't put my degree to use to get a job. I can't go out and socialise. I can't put myself in a position to find love, settle down, get a house and have a family. These are all extremely important to me, and the clock is ticking. I'm 30 years old and all of my friends are either married or in long-term relationships.

I'm not happy with myself. I'm not happy with so many things about myself. My illness. My height (I'm only 5'4"). The loneliness. I go from day to day sitting in my room looking at movies, or reading stuff on websites. I remember when I was 21 I was out and about, doing everything - making friends, socialising, hitting pubs, meeting girls. My complexion looked healthy, and I had pep in my step. Now I look physically drained, tired, pale, lack energy... Have lost all my social skills, and it isn't mental either - it's a biological thing. I just get so zapped I can't concentrate enough to actually engage in a meaningful conversation.

I really don't think my parents understand how much I'm struggling every day. My mother complains about leaving a dish in the sink. I feel like throwing myself off a bridge, and she's worried about dishes. My doctor doesn't appear to take me seriously anymore. Wanted to go see a new doctor this week but I have no money. I'm so in debt it's not even funny.

I'm working myself up writing this. I want my god damn life back. I want to be healthy and feel normal again. I'm giving it until my 31st birthday - Then I'm done. I refuse to fight any further.

opinion guy

peann wrote: »

Have been down with a bug the last while, so haven't been able to get a round of chelation in. Not sure if it's some naggling virus, or candida. I seem to be struggling at the moment - Everytime I find even a small bit of happiness, I fall back into a hole again. I've been considering the idea of euthanasia in Switzerland if I don't find a solution to my problems within the next year.

I'm not sleeping anymore. I wake up from feeling ill, and feel ill all day and tired. I'm trying so hard to get better, I really am. But it's very taxing to go from day to day without a break. 7 years I've been battling this. I've been so patient. I'm going to see a specialist dentist the end of this week to get a digital x-ray to make sure no pieces of filling have been missed (I'm pretty sure that they haven't).

I really want to get back to chelation - but I tried a round the other day and was just too ill to finish it. Only got 3 doses in and had to stop.

I start a course next Tuesday (Cisco CCNA), so hopefully it will keep my mind occupied while I try find a solution to my problems.

In any case - I've been too strong for too long. This is not living. I know so many people are so brave through illness and tough it out - But I really don't see any point to life when I can't do the things I had planned to do. I can't put my degree to use to get a job. I can't go out and socialise. I can't put myself in a position to find love, settle down, get a house and have a family. These are all extremely important to me, and the clock is ticking. I'm 30 years old and all of my friends are either married or in long-term relationships.

I'm not happy with myself. I'm not happy with so many things about myself. My illness. My height (I'm only 5'4"). The loneliness. I go from day to day sitting in my room looking at movies, or reading stuff on websites. I remember when I was 21 I was out and about, doing everything - making friends, socialising, hitting pubs, meeting girls. My complexion looked healthy, and I had pep in my step. Now I look physically drained, tired, pale, lack energy... Have lost all my social skills, and it isn't mental either - it's a biological thing. I just get so zapped I can't concentrate enough to actually engage in a meaningful conversation.

I really don't think my parents understand how much I'm struggling every day. My mother complains about leaving a dish in the sink. I feel like throwing myself off a bridge, and she's worried about dishes. My doctor doesn't appear to take me seriously anymore. Wanted to go see a new doctor this week but I have no money. I'm so in debt it's not even funny.

I'm working myself up writing this. I want my god damn life back. I want to be healthy and feel normal again. I'm giving it until my 31st birthday - Then I'm done. I refuse to fight any further.

Man I read this hours ago and trying to find the right words to answer it with. Euthanasia in Switzerland ? Giving up at 31st birthday ?? One word for you:
NO.
Those are not options. Things are bleak for you right now but this too shall pass. To believe otherwise is a fallacy. Yes I know you are angry and bitter and missing out - but such is the road some people take in life - that does not mean that things remain this way forever.

As to the friends all married with kids thing - there are many others like you. You cannot judge yourself by those you see around you - who for all you know may be miserable and jealous of your singlehood (might take them another 5 years or so to verbalise this )


I think you need to tell your doctor or a new doctor how you are feeling and about these thoughts of giving up. If you are not happy with him you can even go to A&E and talk to a doctor there. People here can only offer support - it seems like you need more than that right now - those are the people who can help.

peann

I'm tired man, I'm tired. I'm willing to put in as much effort as possible to remedy myself, but if I don't see an improvement I really have no intention of continuing. I have been fighting hard, and for long. But every day feels like hell for me. The only time I'm happy is when I'm falling asleep, because at least there - I can dream about feeling normal. Well, that's until I'm woken up a few hours later due to feeling chronically ill.

I've tried to start another round today - I'll see how I get on. I've dropped the DMSA for the moment and I'm just trying an ALA only round. I really hope I can finish it, otherwise it's really going to impact my mood. A mate of mine from the US has sent me over some DMPS so I'll try that soon and see how it goes.

But right now - I'm feeling so despondent. I don't have the enthusiasm or hope or getting better like I had a year ago. I wish I could shake this bug/virus feeling. It's really not helping things. I have it weeks.

My doctor doesn't respect my symptoms. He tried to attribute it to depression. All it did was annoy me. I'll go see another doctor soon when I can afford it. Will have to wait for a week or two as I'm spending most of my money this week driving up the country to see an IAOMT registered dentist. Last week I spent all of my disability on supplements. I had about 30 euro left for food. I'm just about managing. I have €2.50 in the bank, and €750 debt on my credit card from buying supplements. It was a grand, but I've been trying to pay it off bit by bit. Most of the supplements I can now get locally at one of the health stores.

I wish I won the lotto! Would make this process as alot easier.

amdublin

Hi Peqnn,

you're really getting it all ways aren't you.

Please please make arrangements to go see a new GP as soon as possible. If you can borrow money I'd try go tomorrow if I were you. A new GP with a fresh view on things could be all the difference.

I hate to hear of someone being as sick as you are and I think a new GP would help
Amdub

amdublin

Ps. Don't dismiss any of your symptoms / a part diagnosis the doctors are giving you. I appreciate all the physical illness you have going on but don't underestimate a potential depression as well. Talk to the doctor and see what they can recommend holistically/ for all your symptoms.

Best of luck dude.

peann

Thanks - appreciate it! Sorry for all the moaning.

I've come across some new information which might explain my lack of progress. I won't bore you with the details, but it makes sense in lieu of some blood test work in the past. Fingers crossed.

amdublin

No worries at all! It's good to "talk". Okay to share

Hope today was a good day for you.

peann

I've had better. Feeling rotten today. But then again, what's new. Going up the country on Friday to have a digital x-ray done to make sure my last dentist hasn't missed any amalgam. I still think I should be seeing some progress after almost 2 years of chelation.

Damien M

Ringing Dr Torney later. So looking forward to getting my amalgams out. I guess all the pain, sleepless nights, chronic tiredness is all anecdotal though ! Nothing to do with my mercury reading of >7 !

kangaroo

Damien M wrote: »

Ringing Dr Torney later. So looking forward to getting my amalgams out. I guess all the pain, sleepless nights, chronic tiredness is all anecdotal though ! Nothing to do with my mercury reading of >7 !

Best of luck with it. However, just because your mercury reading is high doesn't mean getting your amalgams out will definitely work.

Damien M

kangaroo wrote: »

Best of luck with it. However, just because your mercury reading is high doesn't mean getting your amalgams out will definitely work.

Why not? Mercury fillings out + no more Hg leaching + chelation therapy + metallic detox = healthy body and brain.

Unless you're telling me a reading of >7 is from eating tuna, and the one time I ate swordfish ? :rolleyes:

kangaroo

Damien M wrote: »

Why not? Mercury fillings out + no more Hg leaching + chelation therapy + metallic detox = healthy body and brain.

Unless you're telling me a reading of >7 is from eating tuna, and the one time I ate swordfish ? :rolleyes:

I'm telling you I know some people with similar symptoms (not sure their reading) for whom such a therapy didn't lead to a resolution of their symptoms.

So maybe it will work, maybe it won't.

peann

So back from the dentist.. Look like there may have been a tiny spec of amalgam left, which has no been removed. Seriously depressing. A waste of two years of chelation. I'm just going to have my two back molars pulled and get a loan for a new denture. Can't be arsed with this shíte.

MolBee

peann wrote: »

So back from the dentist.. Look like there may have been a tiny spec of amalgam left, which has no been removed. Seriously depressing. A waste of two years of chelation. I'm just going to have my two back molars pulled and get a loan for a new denture. Can't be arsed with this shíte.

I don't know if you're for real about that, but pulling two healthy teeth (as in teeth with living roots) isn't a good idea. Bone loss is just one of the things that you'd have to deal with.

I know it has worked for a lot of people and it may well still work for you, but I had amalgam fillings replaced and I didn't see any improvements in my health. I've since tried other things that I've made a lot of progress with though. Judging by our respective set of symptoms we have different conditions/illnesses, but please keep in mind that there are always other avenues to explore, even when you feel at a total loss.

Damien M

kangaroo wrote: »

I'm telling you I know some people with similar symptoms (not sure their reading) for whom such a therapy didn't lead to a resolution of their symptoms.

So maybe it will work, maybe it won't.

So what? A reading of 7 is high. It's not from any other source. These sypmtoms of mine and the other posters here could be caused by any number of substances. Fluoride, Glyphosate, Aspartame. Gluten. Or the 50,000 untested chemicals in the environment. As a PT I've seen hundreds of people get cured of CF, ME and the other bull**** names the Doctors come up with such as Muscle Tissue Disorder, Irritable Bowel Syndrome etc. Your muscle is in pain because you're taking statins! Your bowel is irritable because your body sees gluten as an invader! There is no need to come up with 'Syndromes' and 'Disorders' ...

The most people I've helped on the way to full health has been as a result of removing gluten and it's 23,000 cousins of the Gliadin family from their diet. I'm not stupid. I do know that these symptoms (of mine) occurred within days of getting 5ish grams of Mercury 4 inches from my brain! I didn't fall over cutting the grass due to eating bread though ...

kangaroo

Damien M wrote: »

So what?

So removing amalgam fillings and subsequent chelation isn’t a sure-fire way to get rid of those symptoms in people who have above normal levels of mercury.

Maybe it is different in people like you whose symptoms came on suddenly after being exposed.

Some people can be short of money. It can be useful to know whether something is a sure-fire treatment or not when weighing up the cost (and perhaps time/awkwardness of travelling, etc.) in doing a treatment or not.
Also, it may help people becoming devastated, perhaps even suicidal, if they try a treatment and it doesn't work, or not fully.

peann

Dad painted house yesterday - wicked ill over the fumes since yesterday. I've a horrible chemical sensitivity. Doesn't help that I've not eaten all day either - no money until tomorrow to buy food. Feel faint, and ill and tired. Not a good combo. Going to try sort out rent allowance again tomorrow so I can get my own place and not have to worry about paint fumes anymore.

lionela

dlofnep wrote: »

Alright,

I've been ill on and off for the past 4 years. Up until now, I tolerated it. Symptoms are flu-like, for months on end. I've been burning up with a fever, sneezing, feeling generally achy and painy. This latest patch has been terrible. I've missed 2 or 3 weeks of work, and I'm after being warned for being out ill twice at this point.

I've tried everything in terms of my diet, just to weed out any allergies - by going on a fruit, veg & water detox for 2 weeks - but I still came down with the same symptoms.

I've had every kind of blood test taken, all came back positive. I'm currently waiting on the results of a Lyme Disease blood test, but beyond that - my GP has absolutely no idea what to do with me.

He referred me to a local gastrologist, who sent him a letter back stating that he can't treat me as it doesn't sound like something gastrology related?

I had re-occuring pains in my kidney areas, but I had a scan on them which came back fine. The kidney pain isn't so bad right now - but about 3 months ago it was really sore.

I've been pretty much trying to tough it out, but it's gone too far now and has kicked the crap out of me. I'm suppose to start a masters in a few weeks, and I'm seriously considering putting it off.

I just don't know what to do - I don't know who to go to. I've taken 30 odd blood tests over the past 40 years, had x-rays and ultrasounds. I generally feel like crap for months on end, with periods of no longer than 1 or 2 days in between where I feel semi-normal. I put on a happy face - but inside, I feel like breaking everything in sight, because I'm 27 and this isn't how life should be.

I've no idea what to do - No idea who to see? I don't have much money, but I need to see someone who'll test me for everything possible, and see it through. Someone who actually cares about their patient. When my doctor is lost for ideas, you know I'm really screwed!

I feel it is something viral, but what the hell do I know? Could somebody point me in the right direction - as if this last test comes back ok - I have nowhere else to go.

Sorry if this all sounds like a whine, but meh.

Worth a try....Jan De Vries in Drumcondra.
He may detect something by looking at your eyes (iridology)

He visits his clinic here in Dublin once a month and by the way cured my wife of a form of myalgia not akin to Fybromyaglia.

peann

Iridology is not real science. Please read the thread - everything has been covered. Thanks.

UmmCadburys

Hi OP , I think the best thing you can do is stop worrying about the symptoms you have , stop writing about them and stop searching the Internet for answers . The fact is you've had probably almost every test available and 30 plus blood tests and none found anything . You say you feel good one day and bad the next or good for a few days and then poor the following few days and for 6/7 years . While I was reading through this thread , i had almost everything you described , I've had every symptom imaginable . Some days are good but some are awful . I've had dizziness,headaches, palpitations,liver pain,kidney pain,constipation,ear aches,sore throats,blurred vision,near fainting,nausea,joint pain,nightmares,back pain,shortness of breath, I mean seriously I could go on and on here and I'm only 31, then I realised if I was sick the doctors would have found it. So I stopped googling symptoms and looking for answers and started ignoring the fatigue and aches and pains and all the other symptoms and started enjoying each day as it comes. Next thing I know a few weeks have past and I feel 10 times better , still get the odd symptom but I don't look for answers , if I were actually sick I would know about it , I thought there was something wrong with my heart , I thought I had a brain tumor , diabetes , MS , Cancer , you name it and i thought I had it . I tried to find answers too but I'm not qualified to find the answers and neither are you . You have to trust your Doctors and just start living one day at a time . You say you go to the gym and do 40 laps of the pool , sick people can't do that , if you we're actually physically ill with all the symptoms you've had and for the time period you've had them the Doctors and Hospitals would have found something by now , in fact if there was something physically wrong you would probably have dropped dead by now and so would I .

peann

I don't need to be lectured on whether I'm sick or not. I'm sick. Very sick. I've been sick every day for 7 years. There are no days I feel "good". Just days when I feel good in comparison to other days. I still feel woefully awful. Ignoring my symptoms won't cure me anymore than a cancer patient could cure cancer by just ignoring it.

My life is hell. My health is about as bad as it gets.

And just because doctors haven't found anything via blood tests (a blood test isn't an indicator of mercury toxicity btw), doesn't mean something isn't wrong with me. There have been countless medical issues over the decades that weren't recognised for years, only to be later understood.

opinion guy

UmmCadburys wrote: »

You say you go to the gym and do 40 laps of the pool , sick people can't do that

I tihnk this is the single most ignorant statement I've seen on the internet. Congrats you win the internet.

peann

You say you go to the gym and do 40 laps of the pool , sick people can't do that , if you we're actually physically ill with all the symptoms you've had and for the time period you've had them the Doctors and Hospitals would have found something by now , in fact if there was something physically wrong you would probably have dropped dead by now and so would I .

Some days I can manage a light jog or a swim - other days like today I can't move from bed. The severity varies, and is dependent on a number of factors. Swimming is a low impact exercise.

I didn't just decide one day that I was ill. I became ill after 23 years of perfect health. Despite it, I pushed through work and college to try better my life. I am now in the unenviable position that I am now too ill to work.

And no - I wouldn't have probably "dropped dead" by now if something was physically wrong. Long-term illness is exactly what it states on the tin - long-term illness. Something you endure over a long time. It doesn't involve randomly dropping dead.

I don't need your validation. I know how I feel and how my health is. I don't care what your assessment of my health or lifestyle is. You clearly were nowhere near as ill as I am - because feeling as ill as I am isn't something you can ignore.

MolBee

UmmCadburys, there is merit to what you're saying, ie. don't drive yourself to distraction when looking for answers, try to enjoy each day as it comes, don't diagnose yourself with terminal illnesses (?!), but your personal experience does not prove that everyone with currently unexplained symptoms is experiencing something that's psychosomatic in origin. I'm happy for you that it worked, but ignoring symptoms does not lead to miraculously feeling better for a lot of people. If you're genuinely ill it doesn't matter if you're thinking about the illness or how the symptoms feel, or how happy or relaxed you genuinely are in your disposition, you still experience them.

You suggest that there can only be something amiss if a doctor can find it, well only if we're assuming we have made all the medical discoveries there are to be made and doctors understand and have the means in which to test for everything currently known and unknown about human biology, health and all that effects it, virus' just for example. They quite obviously don't of course. Absence of evidence is not evidence of absence with regard to looking clinically at ill health... and sadly the medical establishment often don't even have the inclination to look very deeply for biomarkers that could well be identified and investigated, or appreciate certain research which may eventually lead to insight into unexplained symptoms. It doesn't help that people presenting all sorts of different symptoms are grouped together with vague diagnoses like CFS, which muddys the water a significant amount and prevents progress in research. This is why many people are left having to be pro-active and cast the net wider in finding things out, so that they can recover their health or even just some semblance of relief, not because they've deluded themselves into thinking they're qualified medical practitioners.

I know you're only trying to help by relaying your own experience, but telling him he's not sick because he can do activity on a certain day, or he hasn't died yet, makes no sense and is frankly is a bit beyond the pale.

LegacyUser

Just came across this thread, do you have any physical pain ? Only asking as all other symptons you have resemble Fibromyalgia. I know , I've had it for nearly 17 years ,since I was a teenager. All the symptoms you have described could be me, including sensitivity to chemicals,gluten, dairy , yeast , paint fumes make me nauseous and kick off a really severe headache. The flu like symptoms come and go, including fever & night sweats. Took 8 years to get a diagnosis. The pain wasn't a major issue back then ( it is now) , but everything else you described , is almost identical.

The hardest part is not knowing, after being diagnosed it made it easier having a name to put on it.

I previously looked into chelation after having my fillings replaced, and checked with a Rheumotologist I knew , and he advised against it, on the basis that I had so many existing sensitivities and allergies, and that there wasn't enough research on the interactions of chelating agents with prescribed meds, vit/mineral supplements and alcohol.
Plus that known side effects of the chelating agents are similar to symptoms of heavy metal poisoning.

Anyway each to their own I guess. Good luck with getting a diagnosis, personally I'd stay clear of doing too much internet research , I know at the start when was looking for answers I thought I'd every auto immune disease going.

kangaroo

peann wrote: »

Dad painted house yesterday - wicked ill over the fumes since yesterday. I've a horrible chemical sensitivity. Doesn't help that I've not eaten all day either - no money until tomorrow to buy food. Feel faint, and ill and tired. Not a good combo. Going to try sort out rent allowance again tomorrow so I can get my own place and not have to worry about paint fumes anymore.

Sorry to hear of your difficulties.

In case you are interested, there are groups/forums for people with multiple chemical sensitivities e.g. http://www.mcs-aware.org/ , which might be of some use. Not sure there is any group for it in Ireland, but a UK group may have some Irish members.

peann

It's just a consequence of the mercury. Pretty much everyone I've spoken to with mercury toxicity has the same problem - paint fumes make them really ill. I stuffed myself with food today.

Bad night last night. I got really angry - everything caught up. Ended up kicked my bedroom door in and it's a thick door! Was just screaming and crying. I felt so low and horrible. Felt like there was noway out for me. I really don't think my parents know how ill I am. I really don't.

Let's try think of some positive news!

I started a course yesterday with FÁS - I do most of it at home, which suits me fine as I can do it at my own pace from my room. Will keep me busy for a few months.

Also bought food today so I stuffed myself. Drank lots of cranberry juice too as my kidney has been sore for 2 weeks. Hopefully will sleep tonight! Didn't sleep properly last night, next door neighbour's dog howling at 6am

Maybe I'll feel a bit better tomorrow - just have had a horrible week.

padi89

UmmCadburys wrote: »

Hi OP , I think the best thing you can do is stop worrying about the symptoms you have , stop writing about them and stop searching the Internet for answers . The fact is you've had probably almost every test available and 30 plus blood tests and none found anything . You say you feel good one day and bad the next or good for a few days and then poor the following few days and for 6/7 years . While I was reading through this thread , i had almost everything you described , I've had every symptom imaginable . Some days are good but some are awful . I've had dizziness,headaches, palpitations,liver pain,kidney pain,constipation,ear aches,sore throats,blurred vision,near fainting,nausea,joint pain,nightmares,back pain,shortness of breath, I mean seriously I could go on and on here and I'm only 31, then I realised if I was sick the doctors would have found it. So I stopped googling symptoms and looking for answers and started ignoring the fatigue and aches and pains and all the other symptoms and started enjoying each day as it comes. Next thing I know a few weeks have past and I feel 10 times better , still get the odd symptom but I don't look for answers , if I were actually sick I would know about it , I thought there was something wrong with my heart , I thought I had a brain tumor , diabetes , MS , Cancer , you name it and i thought I had it . I tried to find answers too but I'm not qualified to find the answers and neither are you . You have to trust your Doctors and just start living one day at a time . You say you go to the gym and do 40 laps of the pool , sick people can't do that , if you we're actually physically ill with all the symptoms you've had and for the time period you've had them the Doctors and Hospitals would have found something by now , in fact if there was something physically wrong you would probably have dropped dead by now and so would I .

If you were able to "think" yourself better is it not likely you were a Hypochondriac? Nobody who is genuinely physically sick can think themselves better.

UmmCadburys

padi89 wrote: »

If you were able to "think" yourself better is it not likely you were a Hypochondriac?

Nobody who is genuinely physically sick can think themselves better.

Who said anything about Hypochondriac ? Are you trying to diagnose people Padi89 ?

And I certainly never "thought" myself better .

What i did do , was go to my Doctor , but this time i decided to accept his diagnosis and treatment instead of trying to diagnose and treat myself .