Ceruloplasmin/Copper Toxicity-advice needed

[rlc]

hi antherder thanks for clearing that up, about excess cooper and dithering if it is wilsons more then likely as it can cause all kinds of neurological symptoms, i apreciate how hard things are for you with your illness, but i would recomened that if you possibly can, that you get all the tests done as quickly as you possibly can, if it is wilsons the sooner you get treatment the better, if it's not these test may throw some light on what is really happening and lead to you getting properly treated, all the best take care.

 

[Athene]

Dear antherder and rlc,
Thanks for the info. I haven't had the eye test. I have had lots of liver tests over the years that were sometimes abnormal and sometimes normal. The latest ones were all normal. I'll ask my doctor specifically about Wilsons disease and see if I can get the eye test done too.

 

[rlc]

hi athene the tests you need for wilsons are serum ceruloplasmin, 24 hour urine copper, slit lamp exam of your eyes and also get serum copper done it can help with working out whats going on. in this tread antherder has posted a link to a good site, if you don't have the kayser fleischer rings it dosen't mean you don't have it, only about 66% of people with wilson's do. There is a genetic test called ATP7b if you get it done and don't fail it, it dosen't mean you don't have it, they found other genes that cause wilson's that they don't test for, if you do get it done and you fail it, you diffinatly have it. You say your liver tests have been fluctuating, wilson's can affect the liver, and you've also failed the 24 hour urine copper so it's diffinatly worth following up on. keep watching this tread i will post anything i can find about the other diseases that the high copper may indicate. all the best

 

[rlc]

Hi athene i stumbled across your tread about having had tests done that showed you had lyme, pneumonia etc, i don't know if this has been sorted out, but those kind of tests results are very dificult to interperate and sould only be done by someone with alot of knowledge about it, i think it's terrible that a lab would send them out without a plain english interperation of what they mean, but i know it happens all the time, i have had it explained to me by a professor how to read them and have done alot of research on it and if this hasn't been sorted out i would imagine your very worried about it, so i thought i better let you know, from my reading of them you don't have Lyme disease you had it and it's gone, it would make sense that you had, had it in the past as you had a bulls eye rash which is the classic symtom, you don't have clamydiaor or mycoplasmin pnuemonia you had them, probably the bout of pnuemonia you mentioned,the best way to know if there still in you system is quite simply weather your alive, with these kinds of pneumonia either your body or anti biotics wins or your dead or have major organ damage so i wouldn't worry about that. the Ehrlichia is a bit more interesting but more then likely is just a sign of an infection thats gone, it says at the end to do ena and ds-DNS-antibodies to confirm weather it is or not which i presume they would have done and it was negative but i would suggest you make sure of that, it's treated with antibiotics so shouldn't be to hard to get rid of, if it' is still alive so i don't think theres to much to worry about, but i'm not a profesional, my advise would be to get your doctor to send the whole lot to a lab to get them properly read, when i first got sick my doctor told me i had EBV,CMV and tosoplasmosis turned out years later when they where read by someone who new what they where doing that i had, had EBV and CMV long before i was sick and had never been anywhere near toxo in my life, so very important to make sure it's done right, these kinds of tests are suposed to be compared to other lab tests and symtoms before a diagnosis is made, there is also a disturbingly high chance of lab errors accouring. the main reason people have so much trouble with these tests is that when they see something like IgG, or IgM positive they think it means they have the disease where as most of the time it means that at some time they have come in contact with this bug and beaten it, often with no symptoms, all these results mean is that your body has devoloped a defense against the bug, unfortunatly if these tests are read wrong it normaly ends up with an extreamly worried patient, who will often spend alot of time and money trying to cure a bug thats been dead for decades, also if anyone dosen't know the meaning of all those little symbols and that if there isn't one it can also have alot of meaning, there's no way that there going to get it right. if there's anything on the results that you think i might be able to help you with just post it here, make sure a professional looks at the tests, but i think the main thing is to find out the reason for the high copper hope this helps all the best

 

[Athene]

Hi rlc,
Thanks for the post.
I started that thread when I had the preliminary results, before I had seen the doctor. I had a two week stay in the Lyme clinic with daily consultations with a Lyme expert doctor who explained everything - he is world renowned and definitely an expert of tick-borne diseases. So I definitely trust the diagnosis... I am still doing thrapy.
I asked him about the metals and he said some people with Lyme disease get a heavy accumulation of various metals but nobody knows why, and many of them don't. His view of investigating the metals was, let's get rid of the Lyme disease, then worry about that. I have gone along with that, partly because I am so low on money now, and doctor-weary (I have one blood test and at least two consultations with my family doctor a week) and, most of all, because I know that Lyme, and the antibiotics i am taking, can distort a lot of blood tests and therefore could give me a misleading result.
However I am still going to ask my doctor about the tests you advised next time I see him, he is sure to know which would be reliable and which would not.

 

[rlc]

hi Athene sorry to here that you have lyme, but glad to here you found an expert to look after you, what did they say about Ehrlichia? i sure everybody here understands about being doctopr-weary, i certainly do! but i have found that if you print out and take in information from proven and respected medical sources, they can't really argue with you, heres a link to one for wilson's http://www.medscape.com/viewarticle/467413_3 you'll see that it says that urinary copper is increased in people with wilson's, although it isn't necessarily proof of it and all the tests need to be done, so altough most doctor's behave as if there are no consequeces for there actions, there are and they involve being struck off, i've found as a result of this that when they realise that a test is pointing to a serious condition, and that if it was found out they ignored it they'd be in trouble, they tend to suddenly be very helpfull, the problem often isn't so much that they don't want to help, but that they have no idea of how serious some of the conditions these tests point to are.i hope that your doctors is good and it won't be a problem, but i've found it's always best to be prepared and take in information to suport your case, hope you feel better soon all the best

 

[Oli]

Hi there antherder. I was wondering how you have got on with this. I was diagnosed with supposed ME/CFS 3 years ago, but from some recent testings I too think I may have copper toxicity. I requested a ceruloplasmin test and got my result back at 0.2. Not low low but not exactly mid-range! I have just done a 6 hour DMPS challenged urine test to measure my mineral and heavy metal levels in my body. Where have you got to in terms of health? I seem to have many symptoms of copper toxicity but my GP does not seem to know what to do next as he does not think it is WILSON'S Disease. Looking forward to hearing back from you.

 

[antherder]

Hi Oli. I haven't made any progress yet. Have had some more important stuff to deal with since I last posted, but I hope to get the 24 hr urine test sorted next week. My health is not so good. I think I'm still detoxing copper, or something, anyway. I haven't heard of a DMPS test (going to google it in a tick). Will be interested to hear your results. Have you tried any of the copper antagonists supplements like zinc, Vit C, and molydenum? (If not, be careful, they might make you worse.)

Do you have a sulfite/salicylate intolerance? Learning about this is how I came to suspect copper might be a problem for me.

Don't know if this will be any use, but I found this detailed info on the liver's detoxification pathways which has helped me understand what is going wrong with my system.

http://www.gilbertssyndrome.com/detoxification.php

 

[Oli]

Ever since I was diagnosed with ME/CFS I always told the doctors it felt like I was ozzing something out of me and never felt clean and had very sore testicles and sinus problems but they never listened. The more I read up on copper it fits my symptoms. The DMPS is a challenged test which helps draw out the copper to see if there is too much. If its Wilson's the non challenged urine test will show excessive copper in abundance anyhow which I am trying to get my GP or find a specialist to do, but am drawing a blank with the medical practice at the moment!!!

Yeah I took a product from EndoMet called GB3 which helps eliminate copper and assist bile flow which was what caused my copper elimination symptoms and led me towards this path. I have stopped it again for now to see what diagnosis I can get before commencing it again and perhaps other antagonists but as you say they make you worse because they draw the copper out.

I have done a liver detoxification pathways test which showed my glutathione conjunction was severely malfunctioning which makes me think that once the copper/zinc imbalance started my body has subsequently stored too much mercury and lead which will also be shown from my DMPS test I hope to get back soon.

No idea about the sulfite sorry. How would I know if I was intolerant to this?

Let me know how you get on with the 24 hour urine test.

What other symptoms are you experiencing? Did the doctors just label you ME/CFS like me?

 

[liverock]

Too little copper is just as damaging as too much.

Copper is required for the production of ATP in the mitochondria,
clearance of toxic-free radicals from the cell,
formation of connective tissue during development, production
of the neurotransmitter dopamine, and maintenance of proper
plasma iron reduction potentials. However, copper also is toxic
to the cell because reaction with hydrogen peroxide can result in
the formation of dangerous free radicals. Cells must therefore
tightly regulate copper homeostasis through an intricate network
of membrane transporters and copper chaperones.[pnas article on cancer]

Heres an interesting study which highlights the zinc/copper ratio in CFS patients.


http://www.nutritional-healing.com....disability scales in Chronic Fatigue Syndrome


The build up of metals, particularly copper, in the body can be a problem with other neurological diseases such as Alzheimers Disease, due to high copper being one of the main instigaters of beta ayloid plaque in the brain.

http://www.lewrockwell.com/sardi/sardi156.html

.

 

[antherder]

Thanks, liverock. Interesting articles. I suspect I also have a copper deficiency, of the bound variety, at least.

Oli, your doc should definitely be getting you to do the 24hr test based on your ceruloplasmin results. Do you think if you took them a copy of that article I mentioned back a few posts, they would pay attention? It's written by a professor who is an expert on Wilson's. And is written specifically to try and educate doctors about it. We shouldn't have to battle for these tests, should we... If not, and if they don't pay attention to your DMPS results, you could see if you can get it done without a doc's referral. Can over here. Not for free, of course...

Re sulfites, they are preservatives found in most foods, and cause a range of symptoms, from asthma to migraines. Rashes too. And they can make your face and ears go red... They could be contributing to your sinus problems. I react to high sulfur foods too like broccoli (and all the brassicas), asparagus, onions. Eggs are also high sulfur. Did your liver test look at your sulfation pathway as well? Too much copper can suppress this pathway, causing sulfite sensitivity, salicylate/phenol sensitivity, etc. Are you allergic to aspirin?

Some info here;

http://www.learningtarget.com/nosulfites/index.htm

and this is the page that made me look into copper as a suspect. He mentions about sore testicles as a symptom of copper detox here;

http://www.learningtarget.com/nosulfites/copper.htm

Other symptoms...hmmm...where to start...I did get the ME/CFS label, but I did get a severe dose of the flu. And it was all down hill from there. If copper is a problem for me, I don't think it is my only problem. I've had a lot of chemical exposure, and have severe stomach problems, reflux, nausea, abdominal pain, etc. The anemia, ostechondritis and balance problems all started prior to the CFS though, so that's what makes me think copper overload. Hope to find out soon...

 

[rlc]

Hi there antherder. I was wondering how you have got on with this. I was diagnosed with supposed ME/CFS 3 years ago, but from some recent testings I too think I may have copper toxicity. I requested a ceruloplasmin test and got my result back at 0.2. Not low low but not exactly mid-range! I have just done a 6 hour DMPS challenged urine test to measure my mineral and heavy metal levels in my body. Where have you got to in terms of health? I seem to have many symptoms of copper toxicity but my GP does not seem to know what to do next as he does not think it is WILSON'S Disease. Looking forward to hearing back from you.

Hi Oli just wondering if you could provide a bit more information on what the referance range for your test was and if it's measurd in g/L, 0.2. sounds low? where i live the referance range is 0.20-0.60g/L

 

[rlc]

hi antherder hope your doing alright, you say in your last post you had anemia has this been sorted out??? i've been having alot of trouble with my GP lately so i contacted a health and disability advocate, it's a free service and they help you in dealing with bad doctors! to cut a long story short, i now have a new doctor whos two minutes walk away, instead of half hour bus ride each way to get to the other one, got first appointment tomorrow they've got a good reputation so hopefully things will get sorted out soon, also going to report the last doctor for his behaviour as well. If your having trouble with your doctor the number for health and disability advocates in christchurch is (03)3777501 hope this helps all the best

 

[Oli]

Hi Ric, Yeah the reference range was 0.2-0.6 so my GP said its in the reference range so normal. Although its low in the range he said the range is the range. He said would need to be much lower to do something. I have tried to request a 24 hour urine test and a hepatic copper test so will see what happens.

 

[rlc]

hi Oli here's a link to a whole lot of information on how to diagnose wilson's it's got a really good graph which makes it easy to understand, it say's that some people with it can have ceruloplasmin levels that are normal, but if they have the kayser- fleisher rings and abnormal liver function tests then it needs to be investigated further, because they may have it. you can get a slit lamp test for kayser- fleisher rings at any good opthamologist link http://geridoc.net/wilsonsdisease/PracticeGuidelineOnWilsonsDisease(RobertsSchilsky).pdf all the best

 

[Vojta]

Hi everyone, could you please help me interpret my results? I've got 0,17 g/l (0,22-0,4) for Ceruloplasmin and 9,5 umol/l (11-22) for Copper in serum. I just get results of my 24h urine test over phone and doctor said that levels in urine are ok so it's ok for her. I also have hyperthyreosis now but it's all started with EBV reactivation (all antibody tests positive for a year). So what role may copper play in my body? Is it rather deficiency or toxicity? (I don't think I have Kayser-Fleischer rings in the eyes).

 

[rlc]

Hi Vojta, low ceruloplasmin and copper can indicate Wilson's disease and a normal 24 hour urine collection dose not rule it out. Kayser-Fleischer rings are not often visable to the naked eye, i would recomend getting a slit lamp test from a opthamologist as soon as possible.

Wilsons can be complicated to diagnose and even if you don't have the Kayser-fleischer rings it is still possible. Do you have failed liver function tests or neurological symptoms?

A full explanation of the diagnosis of wilson's can be found here, this site has a very good diagram that explains it all, print the information and take it to your doctor, alot of doctors have very limited knowledge of how to diagnose it link here http://geridoc.net/wilsonsdisease/PracticeGuidelineOnWilsonsDisease(RobertsSchilsky).pdf

Your tests results also indicate eight other possibilities, which may be the underly cause of your problems these other conditions can be found here http://en.diagnosispro.com/differen...reased-ceruloplasmin/11099_11941-153_153.html
print this list and get your doctor to investigate them as well.

EBV test results can be very difficult to interperate, because the positive results can indicate past infection, on this site is a explination of how they should be read http://www.labtestsonline.org/understanding/analytes/ebv/test.html

Hope this helps, all the best, any other questions post them here.

 

[Vojta]

Thanks rlc for info about Wilson's. I will read . My liver tests are/were always ok but I have some neurological symptoms (tremor, tinnitus, visual snow, cognitive impairments, occasionaly headaches.. but no psychiatric symptoms). My MRi was clear half year ago and my eyes were checked by ophtalmologists few times this year. So I don't know if my symptoms fit enough for Wilson's disease. Maybe I should let them check my my eyes again for the the Kayser-fleischer rings again..

As for EBV I have all antibodies (VCA-IgM, VCA-IgG, EBNA-IgG, EA-D IgG) long-term positive but nobody cares here even if I have these results (maybe because I don't have liver failure which is typical for mono. Otherwise I have all symptoms typical for EBV infection).

 

[rlc]

Hi Vojya the eye tests for wilson's is the slit lamp exam, maybe you could ring them up and ask them to check if it's been done. Because your liver tests were ok and you don't appear to have major neurological symptoms it's unlikly but still worth following up on.

With Virology tests for EBV etc there very hard to read because they often show positive results for the rest of your life even when the infection is gone, so i can't give you a diffinative answer. However people who have chronic EBV infections normaly have an underlying health problem that is stopping there body from beating the infection, and once these underly conditions are found it often heals quickly.

Your copper results show you do have a underlying condition thats not CFS. If you work through the other conditions on the Diagnosis pro site that i gave you the link for you will almost certainly find the problem.

One that stands out because it is so common is Sprue (gluten enteropathy) it's a flash medical name for Celiac Disease which causes malabsorbtion of copper and a large amount of other nutrients that would damage your imune system information on it here http://www.medicinenet.com/celiac_disease/article.htm Celiacs is also very much linked to causing thyroid problems link http://celiacdisease.about.com/od/c...ase-Thyroid-Diseases-Often-Found-Together.htm if you get the test done for celiac you have to eat food that contains gluten before hand or you can get a false negative result.

All the best

 

[Vojta]

I read on wiki the decreased levels of ceruoplasmin could be caused by overdose of vitamin C (http://en.wikipedia.org/wiki/Ceruloplasmin). I'm taking 1g of vitC a day and doses of chlorella. Maybe it could be also explanation for my slightly decreased levels of Cu and ceruoplasmin.

Two labs did celiac blood test (2months interval between) and both were negative (I'm eating gluten containing food all the time).