Ceruloplasmin/Copper Toxicity-advice needed

[rlc]

Hmmm I think my leprechaun lives in my head because my odd sense of humour follows me where ever I go, much to the bafflement of my friends. However I did have a CT scan of my head and they didn’t find anything. Hang on that didn’t come out right, they did find something, a large walnut shaped thing, no idea what that’s for, but there was no sign of a leprechaun, maybe it controls me by remote psychic powers, or maybe I’m your Leprechaun trying to confuse. He, he.

I’ve decided Vampires just aren’t reliable enough to trust with my bloodletting, how can you trust someone who sleeps in a coffin? They obviously have no idea about comfort, and capes are so out of fashion, Tut. I understand your concerns about inviting Vampires into the house, but I think if I set up in the part of the house with no carpet an automatic system which fires holly water every time the door is opened and then put up a sigh saying all vampires welcome, a constant stream of igniting vampires may help greatly reduce my winter power bills and when I get hungry, I’d always have a fire to roast some marsh mellows on.

I like the name the copper bopper, they’d defiantly have to be a bit more tolerant then Santa the last thing we need is another puritanical super hero ( Batman get over yourself)

Defiantly glad doctors don’t play Cricket, good luck paging Dr Vettori, isn’t cricket great, did you know it was only invented to confuse Americans, its are revenge for Phrases like do you want fries with that, reality TV, Bill Gates and that annoying habit they have of shouting all the time, we’re not deaf! (Oops sorry Americans it was the Leprechaun) Club a Golfer for a better world, brilliant slogan!!!! I think we should start immediately!!!

Glad you like the idea of faster cheaper air travel, maybe we could ask the UN to help get as all out of here to overt a major mental health crisis, hmmm might not be a strong enough reason, might have to try and convince them that all the sheep have gone feral and started eating people that should do it, and then we could all be relocated, preferably to a country that’s warmer and doesn’t have a prime minister with a silly name, I mean Jon Key, I’m reliably informed that a Jon Key is what Americans use to unlock the toilet door!

Yes I think they do still charge people for treason and that we’re completely guilty and should be deported immediately to Tahiti and forced to live in mansions with are every whim catered for, you of course are going to need servants that will help you unlock the doors! (Yes I did read your other post a while ago, just about fell of my chair laughing Brilliant!!!)

Your right I did forget about the Hobbits, personally I’ve never meet one, but I do know a Dwarf who waxes her feet, who I’m very suspicious of!

Best of luck with your appointment tomorrow!!! If the doctor misbehaves unleash the Leprechaun

 

[antherder]

I didn't see my doctor today, just spoke to the nurse on the phone. My doctor won't refer me to a specialist until I repeat the 24hr test, because she says I only have one abnormal test-the serum copper. She still maintains that my ceruloplasmin level (.17) is normal.

My sense of humour appears to have left the building. It may resurface later, it may not. I have some thoughts (some of which some of you may consider BIZARRE) on easily excitable brains, door locks, and your decline into toilet humour (yes, rlc, I am talking to you) but they will have to wait. In the meantime, I'm going to go outside and try to strike up a conversation with the fairies at the bottom of my garden. See if they have any suggestions on how to reign in the leprechaun. Although...leprechauns are apparently a type of fairy, so rest assured that their input will be carefully scrutinised. Especially if any of them have Irish accents. Or skirts made of clover. Wish me luck. Reckon I might need it.

 

[rlc]

Sorry to hear your doctors still being difficult, any chance of getting a new one? hope you get the 24hr test done soon and can start making some progress with diagnosis and your conversations with the fairies go well and you feel better soon!!!!!!

Best of Luck!!!!!

 

[antherder]

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

richvank,

My current descent into seriously excessive silliness is, I believe, a self-preservation
technique. My boyfriend left me a few weeks back, and at the risk of sounding melodramatic, I'm...well...devastated. My brain is cleverly trying to distract itself from the less cheerful thoughts currently pinned on my neuronic noticeboard. Or, in short, when I'm stressed, I write. Or try to. Usually my outpouring of bizarro thoughts would only make it into my trusty notebook, but I guess that's the danger of having a computer and an internet connection at hand. Someone else might get to read them. Eek. NB: I'm not claiming that if I were stress-free, I would be anywhere remotely near "normal" in my thought patterns. Nor would I want to be. I am also of the opinion that the people reading these thoughts have to take some responsibility for their own self-preservation, and just choose not to read them if they're worried my disorder might be contagious...accusations of infection have been made before...you have been warned...

And yes, you may well be right re the brain overexcitation theory. Sounds more than plausible. I'm not, however, too concerned about the long term consequences at this point in time. I reckon the copper might get me at this rate (probably via the kidneys), long before the Alzheimers does. And if I keep losing more weight, I fear I will soon dissolve into a puddle, formerly known as antherder. Perhaps I should put down some towels...

Which leads me to my next question-is pain in the vicinity of ones kidneys a
normal detox reaction? I've had such pain for over ten weeks now, a dull ache, ranging from mild to moderate, to occasionally severe. I noticed when I took some molybdenum last week, the pain intensified. Possibly a coincidence, possibly not. Have stopped the molybdenum for this reason.

ps-try saying, "descent into seriously excessive silliness" ten times in a row. It's a
scream...

 

[antherder]

rlc,

The 24hr test has been repeated. I went through the joyous experience of lugging a bottle of my own wee halfway across town-with the help of two buses. Highlight of my day. Managed to avoid collapsing, but only just. I'm really hoping my doctor will ask me to do the test once again so I can repeat this thrill. Just in case she won't, I've started hoarding my pennies so I can pay for it myself. Again. We need to have things to look forward to, don't we...

Hate to burst ya bubble re the dousing vampires as they come through your door plan, but I have it on good authority that they know how to climb through windows...

My servants would-preferably-have to do more than just unlock the doors. They'd have to hold then open too, and make sure I walked through them, as opposed to into them...I struggle with the basics sometimes...

I don't hold out much hope for a UN intervention. Reckon that perception of madness being contagious might prompt them to just let us fester. They'd probably issue a quarantine notice. Oh wait...we are surrounded by vast expanses of ocean...we already are effectively quarantined...bet they might find that quite amusing. At least until they start reading this thread...and catch my insanity...ha...nobody is safe...

Oh, and how can I put this politely? If you place two walnuts side by side, they may well look the same, but while one may be full of nutritious elements, ready and eager to sustain life when given the chance to germinate into a mighty oak tree (oh wait, I'm getting confused again, aren't I. Acorns grow into oak trees, so I guess that means walnuts grow into walnut trees...), the other walnut maybe...well...rancid. Just because you have seen your walnut, doesn't mean there's anything useful in it. Nothing personal. Honest. It's just that I've seen mine too, and I think we've clearly established that it isn't exactly bursting with the good stuff.

I can't believe you made a toilet joke about our prime minister! Good grief! The ess-eye-ess will be tapping our phones and planting whisper mics outside our houses as we speak! But who am I kidding. They'll have a file on me already. You too, by the sounds of it. Uh oh...the copper's making me paranoid again, isn't it...snap out if it, antherder, pull yourself together, fight that paranoia...there is no conspiracy...nobody else can read this...nobody else can read this...except the leprechaun...and you are the leprechaun, remember...I wonder if that's what John meant when he said, "I am the walrus"...maybe he had a walrus in his roof cavity...but then, walruses are quite big, aren't they? Big enough to fall through a roof. Or to not be able to squeeze through the small manhole thingy to get into the roof in the first place...I'm guessing here. Never actually seen a real walrus, just ones on those nature programmes...maybe John had a leprechaun in his roof cavity, one who just managed to convince him that he wasn't a leprechaun, but a large sea creature...yeah...that-almost-works...

 

[antherder]

Electricity box avoidance update: It is with much dismay that I have to report this. It appears that I forgot to remember not to shift the clutter that was preventing my brain from scalping itself. To my horror, I see that a tray of seedlings and some garden utensils now reside where the clutter should be. The kind of things one might bend down to pick up, putting one's noggin in the path of metal objects with sinister intentions. I'm quite disappointed with my brain. Stupid walnut. Looks like it needs a good talking to.

Unless, of course, it wasn't me who shifted the clutter, but that little Irish scoundrel
again. Maybe he wants me out of the way so he can have unlimited access to my internet accounts. And so he can invite his walrus buddies over for a shindig. News flash, Mr Leprechaun, who's gonna pay the rent if I'm worm fodder? Hmmmm? The next tenant might not be so tolerant of your mischief making. Think very carefully before implementing your next move...

Oh, and those darn fairies wouldn't discuss leprechaun features without legal counsel present. Typical. It's a conspiracy, I tell you, a conspiracy...maybe the fairies shifted the clutter...

Heading back out into the garden again in a tick, but don't worry, won't even make eye contact with those fairy folk...

 

[rlc]

Hi antherder, glad to hear that you’ve got the test repeated, hopefully your doctor will do something about it this time, I know what you mean about lugging a bottle of wee around on buses , done that a fair few times myself, sorry to hear about boyfriend issues! Pain in your kidney area is not! A normal detox reaction, probably means your kidneys aren’t functioning properly which wouldn’t be too surprising all things considered, don’t suppose that genius of a doctor of your has run any kidney function tests? Would recommend not trying to detox or do any other kinds of alternative treatments until you get a diagnosis, strong chance of making things worse if you don’t know exactly what’s wrong.

Hmmm so my plan to lower my winter heating bills is likely to lead to my early demise, the UN won’t save us, not really surprising, I mean what do you do with 4 million loonies as you quite rightly pointed out put them in quarantine, and there’s a very good chance that my walnut is purely decorative. Bit disappointing really.

I ‘am however delighted at the thought of them tapping my phone, because my conversations with my friends usually descend into the same kind of silliness my conversations with you do and the thought of a bunch of secret agents trying to work out what it all meant gives me a giggle.

I do hope you have a well reinforced ceiling because walruses are very heavy, and it would be a great shame if you where squished by a descending walrus!

All the best keep smiling

 

[richvank]

Hi, antherder.

O.K., I'll stop worrying about your brain. Sorry about the boyfriend thing--what a downer.

So now I'm wondering about your kidneys. Wilson's disease can do unhappy things to the kidneys. I'm with ric--I really hope you can get some action on that soon.

Best regards,

Rich

 

[antherder]

While I can imagine (being quite an imaginative lass) that the actual procedure would be somewhat unpleasant, I think the news headline, "Woman squashed by falling walrus," is slightly more interesting than, "Woman's own brain excites itself to death," and it's clearly streaks ahead of "copper deals to woman's kidneys." If I have to go, and we all do, sooner or later, or so I'm told, I'd rather it be something odd. Very odd. Something that'd make a worthy entry in the Darwin Awards. Would like to have the last laugh, so to speak. Not sure you'd be able to see the grin on my face if I was buried under a mountain of walrus blubber, there might only be one of my spindly little arms visible, poking out the side (I'd try to manage a wave), but rest assured, the smirk would be there. Underneath it all. Unless, of course, death was not instantaneous.

Re the kidneys, I paid for a test myself in December. My gfr came back at 73. Just under the norm. I've read though that using the MDRD (I think) formula is not advisable with extremes of body weight. When I used the Cockcroft-Vault (I think) formula that does factor in my whopping 42kgs, it came out around 56. I did discuss this with my doc. She agreed re first formula not being suitable, but she thought that would mean my gfr would be higher, not lower. To be honest, I give up. I haven't rechecked it to see who is right. She did a dipstick test on a urine sample that showed no protein, or anything else, except billirubin (no surprises there) and she was going to send it to the lab to check it for microalbumin, or something like that. Apparently the results were "normal."

I'm actually more concerned about my heart at this point, as I know copper can affect that as well. My heart has felt like it's been shuddering for about ten weeks too. Every day. First noticed it about 5 or 6 months ago, but only a few times. Don't really know how to describe it. Like an internal tremor. Not usually going too fast either. Physical activity makes it worse, but it's also there when I'm resting. My eyesight went all shuddery/shaky too on one occasion, after exertion, which was a bit scary, but that's only happened once. If this was being caused by the copper though, wouldn't one expect my serum copper to be elevated? From what I've read on these threads, heart symptoms are quite common with CFS. I did discuss this with my doc too. Her response was that she doesn't know what it is, but that it's nothing to worry about and is probably just caused by stress. She did, however, come to this conclusion without even listening to my heart...ho hum...

While I realise that Wilsons is a reasonable contender at this point in time, is this
alternative scenario possible? Six months ago I took the doc prescribed ten day loading dose of Vitamin D. (My Vit D level was very low at 12. It is now 82.) It's been a downhill slide ever since. I've read online that Vit D increases, among other things, metallothionein. If the Vit D kickstarted my liver into a major detox of all sorts of stuff that it hasn't been able to get rid of, could this cause my liver to dump excess copper into my kidneys? My liver function tests in Dec were normal range though. I have had potential exposure (in childhood) to organophosphates and organochlorines including 2,4,5-T, 2,4-D and dieldrin, and have MCS, so my liver might be a little busy. Especially with the weight loss, as I understand pesticides are stored in fat cells, although the weight loss started after I took the Vit D. If my adrenals aren't in too good a shape, that could explain the low ceruloplasmin and serum copper, couldn't it? Or am I just clutching at those long thin hollow things that people use to inhale milkshakes with? (Maybe inhale isn't the word I'm looking for...)

If this is a possible explanation, how do I make it stop? How do I-safely-put the brakes on this detox? And weight loss? Before someone has to mop me up?

 

[rlc]

Hi antherder, hope you and those close to you survived the earth quake in one peace! take care mate, all the best

 

[dannybex]

Antherder...

I too have had increasingly racing thoughts, extra anxiety, and weight loss, etc., all of which I didn't need (!) since my doc overprescribed methylation supps back in October, which caused heavy metals to dump too quickly from my liver.

I'm just now learning, that besides mercury and arsenic issues, that copper is often involved with mercury problems, and even though it showed up low on my hair elements test, that it could indeed be stored in high levels.

I found this thread over on curezone, which is linked to an article from the Weston Price folks, but found it very interesting, especially in regards to how to turn around a high copper situation.

The author makes several interesting points regarding diet and especially the need for proper bile formation in order to properly, and more safely lower copper.

"Racing mind, which I have experienced as a kind of desperate, circular chattering of my own thoughts that can go on for days, is a special case here because it is so specific to the copper overload problem. The cognitive deficits of chronic fatigue patients are often characterized as "brain fog," and investigators have found a general slowing down of brain functions. For patients to complain of rushing, frantic thought processes is an anomaly that can complicate the diagnosis of chronic fatigue, unless its role as a tipoff of possible high copper is recognized.

Michael Rosenbaum, MD, has credited Gittleman with recognizing "tired bodies with overactive minds"51 as the signature of the copper-zinc imbalance."

Everything she says rings a bell with me, so I'm going to try what she suggests.

http://curezone.com/forums/am.asp?i=1136029

Hope this is helpful.

Dan

 

[Johnathan]

I am a medical herbalist in the UK just completing a BSc Hons course in the subject. There has been considerable interest recently in copper toxicity and there is a lot of relevance to your post. You may be asking the wrong question. If you start at energy production and work back you may find info. of interest.

Energy is produced in the mitochondria of the cells (every cell) by the Krebs cycle. This burns fuel with oxygen to produce about 85% of the cells energy (in the form of the ATP high energy donor molecule). This goes around the cell powering various enzyme reactions and allowing the cell to function.

For the Krebs cycle to function it needs bio-available copper. This is not usually free-floating in the blood stream and cannot enter the cell in its free form. It needs to enter bound to a transport protein called Metallothionine so without this protein the Krebs cycle and energy production/function of the cell will be compromised. If this is a muscle cell, fatigue will result. If it is a beta cell in the Islets of Langerhan in the pancreas, reduced insulin production will result (and so on for each type of cell). So this is a VERY important protein.

Metallothionine is produced in the liver from Cysteine. It needs zinc to achieve this conversion. Zinc and copper are absorption antagonists. If a person has been taking in too much copper in the diet and not enough zinc, the receptors in the liver become flooded with copper and there is insufficient available zinc to make Metallothionine, so enough copper cannot be carried into the cells. There is therefore a bizarre situation where the liver has too much copper and the cells are deficient.

Excess copper does not show up directly in blood tests. Free copper is fairly toxic so it is almost always bound to a carrier protein. Ceruloplasmin carries the copper to the sites where blood is made. It is intimately involved with the metabolism of iron and therefore haemoglobin production. It is understandable that a ME sufferer would focus on this process because haemoglobin is all about carrying oxygen to the cells. However if the oxygen cannot be used properly when it gets there (because of a shortage of Metallothonine) you can optimise your haemoglobin until the cows come home and you will still not get a result.

There are other issues about the de-toxification of the cells from metabolic by-products with Gluthione, which is also associated with copper overload. There are neurological, connective tissue and heart arrhythmias associated with insufficient Taurine which is also part of this syndrome, but I dont want to expand this forum response into a treatise on biochemistry even if it is relevant. There are practical, safe and available treatment protocols to deal with copper imbalance, but I think that I should have some guidance from a moderator before I go further.

I hope this helps.

Johnathan Swift (..and yes! I am a descendent of the author of Gullivers Travels)

 

[Vojta]

Hi Johnathan,
thank you for valuable information about energy cycle. I think you can feel free to expand this forum in relevant biochemistry stuff. As I have low levels of Copper and Ceruloplasmin I'm still wondering what does it mean. No doctor could explain it to me so far. My blood panel has always been in normal range. But I had thyrotoxicosis for some time before treatment. Could it mean that copper was somehow overconsumed because of thyroid hormones or should I be worried about Wilson's disease?

 

[dannybex]

...There is therefore a bizarre situation where the liver has too much copper and the cells are deficient.

Excess copper does not show up directly in blood tests. Free copper is fairly toxic so it is almost always bound to a carrier protein. Ceruloplasmin carries the copper to the sites where blood is made. It is intimately involved with the metabolism of iron and therefore haemoglobin production. It is understandable that a ME sufferer would focus on this process because haemoglobin is all about carrying oxygen to the cells. However if the oxygen cannot be used properly when it gets there (because of a shortage of Metallothonine) you can optimise your haemoglobin until the cows come home and you will still not get a result.

There are other issues about the de-toxification of the cells from metabolic by-products with Gluthione, which is also associated with copper overload. There are neurological, connective tissue and heart arrhythmias associated with insufficient Taurine which is also part of this syndrome, but I dont want to expand this forum response into a treatise on biochemistry even if it is relevant. There are practical, safe and available treatment protocols to deal with copper imbalance, but I think that I should have some guidance from a moderator before I go further.

I hope this helps.

Johnathan Swift (..and yes! I am a descendent of the author of Gullivers Travels)

Hi Johnathan,

Thanks for posting here. I hope you'll come back and "go further", and help us with your suggestions for treatments to correct copper imbalances.

I have "tested" low for copper for years -- but all of these tests may have been questionable: hair, urine, and electrodermal (kiniesology). My main doc won't test for copper or ceruloplasmin levels, so I'm stuck not knowing how to figure this out.

I do have borderline anemia when last checked (a year ago) and I think that's worse now, plus liver and bile issues (not enough bile production) so would very much appreciate your input.

I can guarantee you it is fine with the moderators if you want to offer suggestions. That's what this board is all about -- helping others.

Thanks in advance,

Dan

 

[Mij]

Johnathan, I also have below normal Ceruloplasmin and Copper levels. Is this somehow related to low ferritin(which I always struggle with) due to malabsorption or low stomach acid? Could the explanation for this be that simple? thanks and welcome to the forum!

 

[redo]

I'm wondering if anyone can help me interpret some test results and offer some suggestions on where to go from here.

I don't think I have Wilson's Disease, which is a genetic copper storage problem, but I do think I am copper toxic, and copper deficient at the same time.

I recently had my ceruloplasmin level checked. The results were;

.18g/L (0.15-0.60)

While this looks like it's within the normal range, reference ranges vary between labs. According to sites specifically about Wilson's Disease, any ceruloplasmin level less than 20mg/dL (the Merck site uses the reference range 20 to 35 mg/dL) warrants further investigation.

My first question is, have I misinterpreted my results? I don't trust my old noggin anymore, what with all that brain fog up there...

The locum I discussed these results with didn't think they were significant. I suspect my doctor would probably say the same, but I think they are very significant. I've had a high level of exposure to copper my whole life, and I have a high copper diet. If I'm not binding much useable copper, where is the rest of it? Wouldn't that mean that it's in my system, unbound, causing mischief? My serum iron and zinc are low. I've had trouble with anemia since the age of four. I've never been able to get enough iron from my diet, regardless of what I eat. I have to take supplements. Although now, my iron is low again, even though I am taking iron pills.

I know that hair analysis is considered the way to go for confirming copper toxicity, but I can't afford it (it has to be sent overseas too, so is a long wait for results), and I want some sort of test that a doctor would recognise as relevant.

I'm considering getting a 24hr urine copper test done, which doesn't need a doctor's referral. I don't think my doctor would order one. The problem with that is I will have to take supplements to try and force a "copper dump" which will make me very ill. I took some molybdenum a few months back and I think I experienced a copper dump then and I'm only just managing to claw my way back up to the surface.

The other option is a slit-lamp eye exam to look for Kayser-Fleischer Rings, but I don't know if these are present with copper toxicity, or just Wilson's Disease.

Maybe I've got it wrong, and I don't have a copper toxicity problem, but given my symptoms, I need to rule it out...

Not really sure where to go from here. Suggestions, anyone?

I've had the exact same thing. Low, but not too low ceruloplasmin. I didn't have Kayser-Fleischer Rings (which are present in practically everybody with copper problems, or at least those with neurological problems from high copper). I had some "abnormalities" in a liver biopsy, and I was given a Wilson's diagnose.

I then got medication against Wilsons for many months, perhaps a half year or more (don't remember the name of the drug, but it was a chelating substance, can check it if you want). The medicine did nothing for me, and my symptoms did not match the symptoms wilson's patients describe.

I then did a gene test, which costed a fortune, in Scotland. It came back negative, I did not have Wilson's.

Bear in mind that I am not a doctor, but if I were you, and my symptoms did not match Wilson's at all, then I think we'are having the same thing. And that is gut problems (which does not give "tummy symptoms"), coming from the pathogen which gives people CFS. I wrote a thread on that recently.

It would make sense that a pathogen in the gut could "mess" with the body's ability to regulate metals properly. That's my two cents.

 

[dannybex]

Hi Redo,

Yes, that's the $64,000,000 question: Does the pathogen (or pathogens) in the gut mess with the body's ability to regulate metals, or vice versa? I don't know.

I did see this study yesterday that showed that the trace mineral boron may help increase ceruloplasmin:

Biochemical and physiologic consequences of boron deprivation in humans.

Nielsen FH

United States Department of Agriculture, Agricultural Research Service, Grand Forks, North Dakota 58202-9034.

Boron deprivation experiments with humans have yielded some persuasive findings for the hypothesis that boron is an essential nutrient. In the first nutritional study with humans involving boron, 12 postmenopausal women first were fed a diet that provided 0.25 mg boron/2000 kcal for 119 days, and then were fed the same diet with a boron supplement of 3 mg boron/day for 48 days. The boron supplementation reduced the total plasma concentration of calcium and the urinary excretions of calcium and magnesium, and elevated the serum concentrations of 17 beta-estradiol and testosterone. This study was followed by one in which five men over the age of 45, four postmenopausal women, and five postmenopausal women on estrogen therapy were fed a boron-low diet (0.23 mg/2000 kcal) for 63 days, then fed the same diet supplemented with 3 mg boron/day for 49 days. The diet was low in magnesium (115 mg/2000 kcal) and marginally adequate in copper (1.6 mg/2000 kcal) throughout the study. This experiment found higher erythrocyte superoxide dismutase, serum enzymatic ceruloplasmin, and plasma copper during boron repletion than boron depletion. "

Not certain how that applies to each of us, but isn't ceruloplasmin necessary to utilize copper properly? And isn't superoxide dismutase typically low in ME/CFS patients? Hopefully Jonathan will reply soon.

 

[Vanessa_M]

I would say do not trust standard lab tests for detecting a copper imbalance - though a urine challenge with a chelation agent as you described would be a good one to do. Some people actually feel way better after taking a chelation agent, though I'm sure you can take some things to offset the oxidative stress after a copper dump like Vit C, selenium, CoQ10 etc... I personally take NAC to support my liver function and it never makes me feel worse.

Serum tests are are notoriously unreliable, and do not reflect what is actually in your tissues. You may want to consider getting a Hair Analysis panel done and that way you get tested for literally everything, not just copper and won't hurt you http://www.arltma.com/HairAnalysis.htm http://www.arltma.com/Mineral_Information/Copper.html , and/or get tested with a lab that uses the Walsh-Pfeiffer ranges (like Direct Access Healthcare II) https://www.pyroluriatesting.com/sh...rum-copper-zinc-plasma-whole-blood-histamine/ They will allow you to order tests kits over the phone, and will explain how you can get the blood draw done and ship the sample in. Might be a local lab in your area that can handle this part of it.
I have researched this topic extensively, after I found out that I had high copper. I got tested via two separate methods to be absolutely sure. It can wreak havoc on your nervous system, cause fatigue, insomnia, anxiety etc.. so worth looking into. Get properly tested, do not trust standard blood work it is not accurate for this.

Here's another great article written by a psychiatrist on this topic: http://www.courtneysnydermd.com/blog/copper-overload-too-much-of-a-good-thing3

 

[Vanessa_M]

The other option is a slit-lamp eye exam to look for Kayser-Fleischer Rings, but I don't know if these are present with copper toxicity, or just Wilson's Disease.

Not really sure where to go from here. Suggestions, anyone?

The Kayser-Fleishcher Rings are only found with Wilson's disease. Your family doctor should be able to check your eyes for these, but also an opthamologist could do it. You can have high levels of copper and not have Wilson's disease, Wilson's is due to a genetic problem. High copper usually correlates well with overmethylation and usually occurs in tandem with zinc deficiency. Some people just have a reduced ability to eliminated copper from their system, usually when zinc deficient, so it is critical to test your levels for both of these nutrients and possibly a few others. I do recommend Hair mineral testing, it is one of the cheapest ways to screen for this and to detect any other nutrient imbalances. Standard lab testing is not the way to go on this one, it is not a reliable indicator of what is in your tissues.

 

[TrixieStix]

I

I've had the exact same thing. Low, but not too low ceruloplasmin. I didn't have Kayser-Fleischer Rings (which are present in practically everybody with copper problems, or at least those with neurological problems from high copper). I had some "abnormalities" in a liver biopsy, and I was given a Wilson's diagnose.

I then got medication against Wilsons for many months, perhaps a half year or more (don't remember the name of the drug, but it was a chelating substance, can check it if you want). The medicine did nothing for me, and my symptoms did not match the symptoms wilson's patients describe.

I then did a gene test, which costed a fortune, in Scotland. It came back negative, I did not have Wilson's.

Bear in mind that I am not a doctor, but if I were you, and my symptoms did not match Wilson's at all, then I think we'are having the same thing. And that is gut problems (which does not give "tummy symptoms"), coming from the pathogen which gives people CFS. I wrote a thread on that recently.

It would make sense that a pathogen in the gut could "mess" with the body's ability to regulate metals properly. That's my two cents.

I know this thread is many years old. However in case someone else happens upon this thread as I did.

It is NOT possible to rule out Wilson's Disease with a genetic test. Science has not yet discovered all the mutations that cause Wilson's Disease (there are thought to be 100's) thus the test only checks for the ones that have been identified. You can most certainly have Wilson's Disease and not have a positive genetic test. The genetic test is only able to help rule WD in but cannot rule it out as a % of ppl with WD have one of the mutations that have yet to be discovered. Any doctor who tells someone they do not have WD based on just the genetic test has no idea what they are talking about.

I too have low ceruloplasmin and low serum copper. I was having neurological symptoms so doctors had me do a 24 hr urine test which was normal. I also did not have KF rings in my eyes. This ruled out WD. Not always but most of the time ppl with WD will have a very low ceruloplasmin rather than just slightly low. Also some ppl with WD have a normal serum copper thus why serum copper is not considered diagnostic for WD.