Ceruloplasmin/Copper Toxicity-advice needed

[rlc]

Hi Vojta looks like it's not celiacs then, i doubt it would be vitamin c at that dosage, you copper levels are alot more then slightly decreased, they should be more in the middle of the normal range. I think it would be wise to keep working through the list to find the cause. Theres information on causes of mal-absorbtion syndromes and a whole lot of other information on this site http://digestive-disorders.health-cares.net/malabsorption-causes.php have you had your kidneys checked? are you on any medications that might cause it? or suppliments like zinc? get the eye test for wilson's done if it hasn't been done already.

Low copper is linked to developing thyroid conditions link http://www.associatedcontent.com/article/296891/how_zinc_and_copper_help_your_thyroid.html

Hope this helps, all the best

 

[antherder]

hi antherder hope your doing alright, you say in your last post you had anemia has this been sorted out???

hi rlc,

Sorry I haven't replied sooner, my health has deteriorated considerably in the last few months and I haven't been up to posting.

I finally got around to doing the 24 hr test for copper, the urine one. Pretty stunned by my results;

5.07umol (0.4umol-1umol)

Didn't see that coming. Almost didn't do the test as I had to pay for it myself. Reckon the copper might explain the lifelong anemia....and a few other things...

Might start a new thread on this as I want to know how common this is in cfs sufferers. Still don't think I have Wilson's, but obviously I've got a copper problem. And a "how the heck do I get rid of my copper problem" problem, too...

PS-great to read you got a diagnosis after all this time. Bittersweet, I know...

 

[rlc]

Hi antherder, I was wondering how you where getting on, sorry to hear your not well! Your very failed test result means you have one of these four conditions link http://en.diagnosispro.com/differential_diagnosis-for/urine-copper-increased/10446-154.html Sorry the site seems to be under maintainance at the moment so I can only enter one finding at a time, I'll put the rest in when it starts working properly and see if it narrows the list down.

Wilson's is still on the cards to quote this site, see the chart here http://geridoc.net/wilsonsdisease/PracticeGuidelineOnWilsonsDisease(RobertsSchilsky).pdf Decreased Ceruloplasmin, KF rings absent, abnormal liver function tests or raised 24 hour urine copper, means you need a liver biopsy to confirm diagnosis.

Here's links to info on the other three conditions http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001327 http://digestive-system.emedtv.com/secondary-biliary-cirrhosis/secondary-biliary-cirrhosis.html http://www.ihealthdirectory.com/obstructive-jaundice/

Raised urine copper has nothing to do with CFS if it did everyone would have it! In fact to quilify for a CFS diagnosis people aren't suposed to fail any tests! a fact most doctors seem to forget.

Please don't dither in getting someone to investigate which of these conditions you have, they are all very serious and the sooner you get treatment the better the prognosis, ask your doctor to refer you immediatly to a heptologist (liver speacialist) they deal with all four of these conditions, if you can, pay to go private instead of waiting.

Read something the other day that said some people with wilson's can get blue cresants on their finger nails so you might want to check that out.

All the best mate hope you get the right diagnosis soon!!!!!!

 

[antherder]

Hi rlc, thanks for your post.

My doctor has now seen the results. Unfortunately her response is to get me to repeat the tests. If they are abnormal again, then she will refer me to a specialist. So more delays. I won't have to pay for the tests this time though. I don't find that to be much source of comfort right now. Why does basic health care have to be such a battle? The lab did recommend a doctor who has a patient with Wilson's, but she's not taking on any more patients.

No blue nails to be seen...

 

[rlc]

Hi antherder, unfortunatly it tends to be standard practice to repeat tests like these, but it is good that your doctors finally taking it seriously and is prepared to send you to a specialist, so hopefully the answer and same treatment won't be to far away. Make sure that your doctor is aware of the other three conditions that your test result indicates may be a possability. If things get really bad, take your test results with you and go to the emergancy department at the hospital, and they'll sort it out for you, they'd probably admit you with results like yours, and you'd get all the tests done very quickly. unfortunatly in the nz system it's often the only way to get treatment quickly, thanks to the slack GPs!!

All the best mate, hopefully you'll be getting treatment soon

 

[rlc]

Hi antherder, tha diagnostic softwares finally working again, when i add your anemia to the high urine copper it gets it down to two possibilites wilsons and primary biliary cirrhosis link http://en.diagnosispro.com/differen...reased-anemia-causes/10446_12887-154_154.html then when i add the low ceruloplasmin it says you have wilsons http://en.diagnosispro.com/differen...-decreased/10446_12887_11941-154_154_153.html So unless there has been a lab error or you have more then one condition which is confussing the results it looks like you have wilsons. I hope you manage to get to a good speacialist quickly who can organise treatment for you!

All the best mate take care!

 

[antherder]

Thanks, rlc.

I got my repeat ceruloplasmin result - .17 (was .18 in August.) I've had chronic gut inflammation for eight years and recent inflammation too, so it may be falsely elevated. My serum copper is 8.4 (11-22umol) I can't repeat the 24hr test till next week, and I've just started taking molybdenum again, so that might interfere with the result. Will have to wait till Monday to see if my doctor will refer me to a specialist on these blood tests alone. Not that hopeful...

How are you getting on with the iron overload? Any improvement?

 

[rlc]

Hi antherder, lets hope your doctor stops mucking about, seeings as you've failed the serum copper as well, thats 3 of the tests for wilson's you've failed now, what more do they need? With my iron overload, the some what frustrating situation is that i need a speacialist at the hospital to send me for the treatment because for some bizzare reason GPs arn't allowed to.

My GP sent a referal letter to the hospital at the end of december and so far I haven't even been sent a letter to tell me when the appointment is. I rang them up the other week and they said they had received it, but that i had to wait until the doctors got round to prioritising it. And then no doubt knowning that useless lot the appointment will still probably be months away Arrrg.

So not much i can do about it at the moment apart from sit round pretending to be patient and hopeing that the delay won't lead to perminant organ damage.

Hopefully you'll get a speacialist who's interested in your case, Wilson's is a lot rarer then Hemochromatosis so it might help getting them motivated.

All the best for monday!!!!!!!!!!!

 

[antherder]

rlc, sorry to hear the specialists are "dithering" (maybe they have copper problems too). That really sucks. Yet so predictable. I suspect the same thing will probably happen to me. Assuming I actually get referred in the first place...which I won't... and anyway, Wilson's may be rarer, but I'd have to find someone who knows what it is first. (I still don't think I have Wilson's, but hey, gotta rule it out)

Speaking of things that suck...here's a thought...what you need to do is forge a symbiotic relationship with a vampire (one who knows when to "say when"). Maybe you could actually sell your blood. How about an ad online? See if you can rouse any of the undead from their slumber? Would be a good way to draw attention to your plight. And your misdiagnosis. The media do seem to enjoy highlighting the internet's more unusual offerings. Heck, maybe I'll see if anyone wants to buy my copper load. It's supposed to be worth a few bob, isn't it? Guess the "handing the goods over" part might be a little tricky for me though...

 

[rlc]

Thanks for the giggle antherder!!!! I don't think the speacialists have copper problems though, I think they work on the basis that if they fart round long enough the patients will die and they'll have more time to play golf,

I like the idea about the Vampire! and imagine i'd get quite a few replies from trademe though it might take a little while to sort through the replies to find a suitable candidate, how can you tell if a vampire knows when to say when?? check their CV I supose. Can't think of any Monster who speacialise in taking out copper though, still there's an idea for a very unusual horror story.

Glad to see your sense of humour is still working fine, hope your doctor has no golf appointments on monday and sends you straight to the hospital to get this sorted once and for all!!!!!

 

[antherder]

Ha! Good point re the golf. I was actually going to critique that comment, something along the lines of, "but if their patients die, who will pay their wages?" then I remembered that's what private patients are for, so consider that critique formally recanted.

Yes...I see what you mean re the "say when" problem. Wouldn't rely on their CVs myself, everyone embellishes those, don't they? If they listed any referees, reckon the odds are they would be bogus too. Who in their right mind would give a reference to a vampire? Only someone in cahoots, or under duress, I suspect. I think the only way to make sure that the least dodgy looking applicant couldn't drain the tank, so to speak, would be to get someone (someone who you are certain doesn't spend all day indoors, and all night outdoors) to watch your back-for every transaction. A partner in crime prevention armed with a hose full of holy water would probably do the trick. Don't know if anyone's selling holy water on trademe, but I'm sure there will be a hose going spare. I guess the real danger might be that the vamp would tell his/her friends, with the intention of staging an ambush, so you might need more than one hose, and more than one person to hold the hoses, just to be on the safe side. Hmmmm...and more than one person to turn on more than one tap, to avoid any unfortunate delays...assuming there are indeed taps on the vessels the holy water is stored in...and that they are pressurised...I don't think a trickle would be very effective... In fact, on reflection, the whole scenario is starting to get a little complicated. Can I get back to you on this one?

Hope you iron out those treatment delays real soon... Sorry, I know that pun is a shocker, but I couldn't resist. I have been told, on more than one occasion, that I have a quirky/offbeat/odd sense of humour (that's the polite version, at least), and I now find myself wondering if this is a copper thing too. This thought inevitably leads to other thoughts, not so user friendly ones...like, what will happen to me if I get this EVIL copper out? Will I stop laughing at things that other people don't recognise as funny? Will I stop having uncontrollable giggling fits that other people-who don't know me-assume incorrectly are drug induced? Will my sense of humour become...well...bland? Will the little lepracaun who lives in my roof cavity, the one who assures me that the copper hasn't made me start hallucinating yet, not want to hang out with the copper-depleted version of me? Who will I be, if not a herder of ants?

Oh! But of course! Silly antherder! She's done her research. She knows the odds of getting the copper out-safely-are pretty slim. Reckon her warped sense of humour/bizarre way of looking at the world is here to stay. For now. Phew.

OMG! Did I just refer to myself in the third person? Noooooooo....Someone...please....get this malevolent metallic mineral out of my brain....(FYI, I was tempted to say out of my "mind", but I thought the pun was enough to deal with, an appalling attempt at alliteration as well might be pushing it. We copperheads are a considerate lot. Or so I've read.)

 

[antherder]

OMG! I didn't write any of that above! It was the lepracaun! He must've peeked out from the ceiling manhole thingy when I typed in my password, and then hacked into my account. It was all his doing. I swear! A little too often, actually. And just wait till I get my hands on that pint-sized scoundrel. How on earth is my copper-compromised brain going to come up with a new password...let alone remember it? And how am I going to remember to check he's not peeking again when I type it in? As if I haven't got enough to deal with... I s'pose I could use "copper" as my password...or perhaps ceruloplasmin, for a little dash of sophistication. Not likely to forget either of those words in a hurry. Oh wait...am I still typing? You're um... you're not reading this are you? Darn...back to the drawing board...drawingboard...no...don't think I'd remember that one...

 

[richvank]

Hi, antherder.

I find you hilarious!

However, in view of what you've written, I'm wondering about your brain, seriously. Copper can promote oxidative stress, and oxidative stress can promote excitotoxicity of neurons.
Would you say that your brain operates fast, compared to those of others? Are you very fast on the come-back in a conversation? Do you have a constant, "wired" feeling?
Do you have insomnia? Anxiety? Are your senses (vision, hearing, touch, smell) particularly sensitive?

I would hate for you to lose your crazy sense of humor, too, but let's try to make sure there isn't a downside to it for you in the long run.

Best regards,

Rich

 

[rlc]

He he, so you have a leprechaun as well, must be a symptom of metal overload, I’ll have to get in contact with the people who write the medical textbooks and get them to update the symptom list! Don’t worry about referring to yourself in third person, me myself and I do it all the time.

But seriously I'm quite convinced that all the worlds medical problems are caused by Golf and it should be banned immediately! If doctors spent less time worrying about their handicaps and more time worrying about ours we'd all be cured in no time.

This Vampire idea is definitely getting a bit complicated, because if I can get someone to blast the misbehaving Vampire with holy water, when vampires die they burst into flames, which has a nasty habit of leaving burn marks on the carpet and piles of ash everywhere! The ash isn't a problem because I live in wellington and it's so windy here all you have to do is open a couple of doors and everything is immediately sucked out of the house, (sucks to be a vacuum cleaner salesman here, pun intended) but I don't want to have to replace the carpet!

Maybe I should instead employ a Vampire to terrify a doctor into giving me an immediate appointment, but this has complications to, because Golfers oops I mean doctors can only be found during the day on a golf course, so I’d have to find a day walking Vampire and apparently their a bit rare!? However I have a feeling that all doctors might actually be day walking Vampires, because have you ever heard a good explanation for what they do with all that blood they take out of us? And whenever I ask for it back, when they’ve finished with it, they always say no! Deeply suspicious! Hmmmm taking some Garlic to my next appointment!

I was thinking that it wouldn’t be a copper removing monster you need, more of a super hero Captain Chelation, who only has the very limited powers of being able to remove copper from the One in thirty thousand with Wilson’s, they could perhaps remove the likes of Mercury and Arsenic as well, but that would mean that they have to help lots of people which would mean that they’d have to be able to travel round the world at the speed of Father Christmas otherwise there would be waiting lists and it would be just as bad as the hospitals.

I can only imagine what anyone who has been following this tread thinks about New Zealand, something along the lines of Its plagued by Earthquakes and terrible winds, has a farcical medical system run by golf obsessed doctors, all the people are somewhat eccentric have metal overload problems, believe that Vampires and father Christmas are real and that their all controlled by Leprechauns living in their heads. Can’t see Tourism New Zealand giving us two a job anytime soon! But personally I think we’re giving a very accurate account of the country!

So in Conclusion

1 Golf should be banned.

2 Doctors are Vampires (hence the lack of chest exams for people who wear Crucifixes)

3 Come to New Zealand if you have a sense of adventure, no concern for your health and a love of eccentric people and leprechauns, or your hobby is Vampire Slaying.

4 Cheaper and faster air travel is needed immediately so we can get out of here, because we’re all going mad in are isolation.

PS the Leprechaun wrote this.

 

[antherder]

rlc,

Nooooooooo...you NEVER EVER invite vampires in. How could you not know that? Have you never wasted hours on end watching eighties vampire movies? Step away from your computer, immediately, and get yourself down to the local video store and hire out Buffy, the full series, to familiarise yourself with appropriate vampire protocol. (But um...just ignore the bits where Buffy has...um...relations with the undead, don't think you need to mimic that part.) Because I, clearly, know more about vampires than you do, I never envisaged the blood letting taking place indoors. I always pictured it happening outside at night, with lots of trees and buildings nearby where the vampire's buddys could lurk in preparation for their ambush. Then again, yes, some vampires manage to conveniently get
hold of ancient amulets that give them special powers, like not turning to dust in the
daytime, but as you pointed out, finding a vampire who knows when to say when and who also has access to such a trinket, might be slightly unrealistic.

Don't just take garlic with you, eat buckets of the stuff prior to your next round of
tests. Spike that blood...

Oh I do like the idea of a Captain Chelation. Very nice. Although, if he's going to be
like Santa, will he enforce unrealistic requirements too? Will I have to be good to
qualify for demineralisation? Hmmmmm. How about "The Copper Bopper" a dude in an
appropriately coloured leotard who will "bop your copper problems on the head". Of course, he'd need some kind of copper bopping tool. Will mull that over. See what my overactive imagination can come up with.

Maybe golf is responsible for more than just the world's medical problems. I seem to
recall Douglas Adams blaming lots of stuff on cricket. Maybe golf is the new cricket. We could be onto something here. (Okay, so I accept that it was your idea, not mine, so I will edit that sentence accordingly in order to avoid accusations of plaigarism-you could be onto something here.) Shall we take appropriate action? Start a "club a golfer for a better world" campaign?

On a more serious note, I don't think you read my last couple of posts properly...the
lepracaun doesn't live inside my head, he lives in my roof cavity (which is not a
euphenism for the carry case that my brain usually resides in...although I do kinda like the way it sounds). So there. The fact that your lepracaun does live inside your head is, quite frankly, a cause for concern. You really should get someone to look into it. And no, I don't mean another lepracaun.

4 Cheaper and faster air travel is needed immediately so we can get out of here, because were all going mad in are isolation.

I'll second that.

Yes, I concur. We aren't exactly great advocates for our country, are we. Do they still charge people with treason nowadays? I was actually wondering if "say when" is a phrase only used by kiwis that may confuse any non-kiwi folk reading this. I seem to recall a tv ad that drummed it in, way back...when. But then I realised that thinking that other people have read what I've written is just straight out paranoia, another copper thing. Sigh. So I'm going to just assume that the world can't read me. Guess that means that richvank is one of my lepracauns alter egos. Crap! That means you are too! OMG! You actually admitted it! All this time, I've just been conversing with that smarmy little sneak! OMG! OMG! OMG! That means that I might not be me...I might just be another one of the lepracaun's alter egos...I have to go...and find a mirror...check my face for lepracaunish features...can lepracauns shapeshift?

Hang on...if I'm not real...does that mean I don't really have a copper problem? Result!


ps-I hope you're not still reading this, rlc. You're supposed to be on route to the video store...

pps-thanks for making me laugh. Needed that.

ppps-you forgot to mention we have hobbits here too. Haven't spotted any in my roof cavity, but I'm cautiously optimistic. I could do with one, or two, to help me gang up on the lepracaun. I reckon the lepracaun would probably try to convince me that I have started hallucinating, and that the hobbits aren't real, but I know now I can't trust that little stirrer anymore, he did, after all, hack into my account. Crap! He might've hacked into my email accounts too...that means more passwords to invent, and remember...groan...tis going to be a long day...

 

[antherder]

Hi, antherder.

I find you hilarious!

However, in view of what you've written, I'm wondering about your brain, seriously.

richvank,

Is that your way of saying you think I'm a bit nuts? It's okay. Really. You're not alone. I get that all the time. Nobody's ever said that, and then backed away from me though. Not yet, anyway. So I guess that's a good sign. I'm wondering about my brain too. Seriously. And I've been accquainted with it a lot longer than you have, so I have even more reason to "wonder"...

Would I say that my brain operates fast compared to those of others? That sounds a bit like a trick question. I would have to say no and yes. No in the sense that my brain frequently neglects to advise me that I shouldn't do things, like stand up when the sharp edge of the metal electricity box is poised to connect with my head (what kind of brain doesn't point out such perils? One with no sense of self-preservation, obviously). And when medical professionals ask me pesky repetitive questions like my date of birth, or my phone number, my cerebral cortex frequently lets me down there too-with an uncomfortable delay in delivery of the required information. And if you read some of the acts of stupidity I have confessed to-in a public forum-on this thread,

http://forums.aboutmecfs.org/showthread.php?8188-The-Laughter-Thread

it's hard to come to any other conclusion than that my brain is stuck in first gear. Or maybe reverse. Or somewhere inbetween. In a sort of bunnyhop. Yeah, that about sums it up. (Hey, I can live with that. As long as I avoid the evil electricity box, I should be sweet. You may be relieved to know that I think I have that covered. So to speak. I cunningly positioned some clutter underneath it, so that I can no longer stand underneath it. As long as I remember not to shift that clutter...)

But yes, I have that wired but tired thing and the insomnia thing. Re the come-back, sadly, not as often as I would like. But I reckon that's a common lament. As Mr Marquez more eloquently puts it;

"I returned home tormented by the little demon who whispers into our ear the devastating replies we didn't give at the right time, and neither reading nor music could mitigate my rage." (Memories of my Melancholic Whores.)

Guess some people have demons in their heads, as opposed to lepracauns. Just to
reiterate-the lepracaun DOES NOT live INSIDE my head...

 

[leaves]

:scared:
Oh my
I had no idea copper toxicity could have such grave consequences.


;-)

 

[antherder]

We copperheads are a considerate lot. Or so I've read.)

Actually, that's not true. I made it up. We copperheads are an imaginative lot. Or so I've read.

 

[antherder]

:scared:
Oh my
I had no idea copper toxicity could have such grave consequences.


;-)

Indeed. My advice (no charge) is to chelate that copper out-while there's still time...

 

[richvank]

richvank,

Is that your way of saying you think I'm a bit nuts? It's okay. Really. You're not alone. I get that all the time. Nobody's ever said that, and then backed away from me though. Not yet, anyway. So I guess that's a good sign. I'm wondering about my brain too. Seriously. And I've been accquainted with it a lot longer than you have, so I have even more reason to "wonder"...

Would I say that my brain operates fast compared to those of others? That sounds a bit like a trick question. I would have to say no and yes. No in the sense that my brain frequently neglects to advise me that I shouldn't do things, like stand up when the sharp edge of the metal electricity box is poised to connect with my head (what kind of brain doesn't point out such perils? One with no sense of self-preservation, obviously). And when medical professionals ask me pesky repetitive questions like my date of birth, or my phone number, my cerebral cortex frequently lets me down there too-with an uncomfortable delay in delivery of the required information. And if you read some of the acts of stupidity I have confessed to-in a public forum-on this thread,

http://forums.aboutmecfs.org/showthread.php?8188-The-Laughter-Thread

it's hard to come to any other conclusion than that my brain is stuck in first gear. Or maybe reverse. Or somewhere inbetween. In a sort of bunnyhop. Yeah, that about sums it up. (Hey, I can live with that. As long as I avoid the evil electricity box, I should be sweet. You may be relieved to know that I think I have that covered. So to speak. I cunningly positioned some clutter underneath it, so that I can no longer stand underneath it. As long as I remember not to shift that clutter...)

But yes, I have that wired but tired thing and the insomnia thing. Re the come-back, sadly, not as often as I would like. But I reckon that's a common lament. As Mr Marquez more eloquently puts it;

"I returned home tormented by the little demon who whispers into our ear the devastating replies we didn't give at the right time, and neither reading nor music could mitigate my rage." (Memories of my Melancholic Whores.)

Guess some people have demons in their heads, as opposed to lepracauns. Just to
reiterate-the lepracaun DOES NOT live INSIDE my head...

Hi, antherder.

Thanks for the response. Here's why I asked you those questions:

About 25 years ago, I met a woman whose brain seemed to work faster than that of anyone I had met before. No matter what anyone said to her, she came back with a clever response almost before the other person had finished speaking. I was amazed at this, and could not fathom how she could think that fast. "Some years later, I heard that she had been diagnosed with fibromyalgia (and maybe CFS). Today, this woman has Alzheimer's disease. Putting all this together, I'm wondering if she was suffering from excitotoxicity way back then, and over time it knocked out neurons, producing the Alzheimer's. This is just a conjecture on my part. But I'm trying to stay alert to anyone else who seems to be able to think really fast, in order to warn them early about this, and suggest ways to calm the excitotoxicity. I'm trying to help this woman, but it would have been much better to stop the damage process earlier, if that could have been possible.

I don't know if this notion is correct, or indeed if it is even relevant to your case, but your prolific, rapidfire, BIZARRE comments caught my attention.

And I do find you hilarious.

Best regards,

Rich