Copper treatment

[Cheryl C]

Hi Chirley - I'm in Ulverstone with my son, wife and family (the North-West) and it's still almost like winter here! Temperatures down to 1 and 2 at night and even minus figures, and often early teens max during the day.

[Chirley]

Ah right, drove through it on the way to Burnie. Then south to Cradle Mountain, on to Strahan.

34 and storms here today.

[Cheryl C]

Hi Chirley - just letting you know that my P-copper result is 13.7 (range 13-25). I completely forgot to ask the specialist about it yesterday, and only noticed it when I got a copy of my results later. Anyway I guess it's in normal range so I don't need to worry about it.

[Chirley]

That's pretty good. Mine drops to < 1 sometimes. I don't tend to get symptoms unless it's under 2. My lab has the same reference range.

The other good test to have is caeruloplasmin. This is to copper what ferritin is to iron. If you don't have enough caeruloplasmin you can't use the copper that you do have.

[Cheryl C]

Oh OK. Thanks for that info. This forum is wonderful isn't it!

[Chirley]

I went to see the psychiatrist yesterday. I had a 15 minute appointment. He nodded off to sleep at least 5 times!

Oh well, at least I had a good laugh last night.

At least he told me that I don't have any mental health issues besides a mild clinical depression and that I've got good coping skills.

I think the poor man must have some medical problem, he looked quite unwell.

I still had a good chuckle when I got home though.

[Cheryl C]

How funny - but did you have to pay for the consultation? Good news for you in spite of that fortunately. We often just don't know what's going in people's lives, do we. Perhaps he does have a serious medical issue.

PS - I have another sore throat - too many lately! Not sure whether I'll be able to stop this one in its tracks like I have most of the others. The specialist down here in Tassie wants me to have a month or two off the Intragam infusions because after 26 monthly infusions my immunoglobulin counts have improved (though not all normal) but my specialist in Sydney is a bit doubtful. Anyway I won't have an infusion in December and will see how I go. Had four needle-sticks today (path + 3 goes to get the cannula in) so it will be nice not to have to put up with that!

[Chirley]

Hi Cheryl, yes I did have to pay. $122.50 for those 15 minutes of watching him nod off. That's $50 out of pocket.

I don't understand, can Intragam cause sore throats? Or should I say, decrease your immunity to them? I thought it was supposed to increase your immunity. It just seems a bit strange to cut them back when you are obviously catching infections.

Back in 2010 my haematologist was going to start me on IGG infusions, I suppose that's the same thing. I was in hospital at the time and I was supposed to start them one afternoon and I waited and it never happened and no one ever said what happened. It was never mentioned again.

I got a phone call yesterday to go and have my blood test today and be ready for admission for more copper next week. This is going to work out well because I have things on for the two weeks after that and wasn't going to be able to have my treatment when it was due. So going in a week early is just fine with me.

A couple of weeks ago I was given some medical advice that was a bit disconcerting but I've started following it. I was told to spend my money and enjoy it while I can. So I've had the outside of my house re painted this week. The colour isn't the same as the colour chart (is it ever) but it looks wonderful. It was supposed to be taupe but it turned out a smokey grey with a very slight pink undertone. Then I had my front door done in a deep very glossy burgundy. I can't stop looking at it....I bought new curtains and new floor rugs as well. Feels good to have a change.

Hope you fell better soon.

[Cheryl C]

In good Aussie terms, that psychologist appointment sounds like a rip-off!

How lovely your house colours are ... I can just imagine it - sounds great. "A change is as good as a holiday," they say.

Re the Intragam infusions, because they cost $2500 a pop on medicare and I am in impoverished Tassie, I think the specialist here is just doing his bit to try and save the government money. Also I'm one of those people who tends to look well even when I'm not. I only got diagnosed with MDS because I had changed doctors when I had chronic neutropenia - the previous one kept saying "you look well" even though I kept saying that I didn't feel it!!

I'll be seeing the specialist here about a week after my next Intragam is due (the one I'm not having) and if I continue with these sore throats I'll certainly be talking to him about it. My feeling is that the IGG does help my immune system because I rarely get a skin infection now whereas I used to get a lot before - insect bites, wounds, oven burns, etc. and until recently I was managing to knock sore throats with a big dose of Echinacea - but this one has turned into another miserable cold and I only had a month off after the previous chest infection. Anyway, I can't complain - I am so fortunate that I don't need any other treatment at present.

One interesting thing ... after I have IGG my hip pain which usually afflicts me early in the morning goes away for a couple of weeks.

Hope your next copper boost goes well. I love your positive attitude.

[Birgitta-A]

Hi Chirley,
Too bad that the psychiatrist was a disappointment!

A sleeping psychiatrist or psychologist is a severe insult .
Kind regards
Birgitta-A

[Chirley]

Due to personal circumstances I haven't had copper for almost 7 weeks.

My neuts have fallen to 0.5 but Hb has remained pretty good at 100 (this was a week ago).

So I'm being admitted on Thursday for 5 or 6 days of copper.

I had a close call last week. My best friend was supposed to visit but felt a bit sick and cancelled. Now she's tested positive for Whooping Cough. I sent her get well flowers and hope she recovers soon. I feel very lucky she didn't visit though.

I started my pre op diet of Optifast on Sunday and started vomiting yesterday. I just can't keep anything down, not just the Optifast. I rang the dietitian and told her but she said to persevere!!?? Nothing stays in my stomach longer than 2 to 3 minutes. I can't even keep my tablets down. Doesn't seem right.

[Birgitta-A]

Hi Chirley,
If you can't tolerate the Optifast diet it is quite dangerous to continue. I don't think the dietitian understands how sensitive you are. Is there nobody else you can contact for example a nurse?
Kind regards
Birgitta-A

[Chirley]

Such relief, the dietitian has changed my diet.

Eggs for breakfast. Berries as a snack throughout the day. 80grams of lean meat with a salad for lunch and 120grams lean meat with steamed non starchy vegetables for dinner.

EASY!

I've phoned the hospital and they are arranging to supply that diet while I'm in hospital as well.

I've lost 4kgs in 3 days, too much too quick, I think.

[Birgitta-A]

Hi Chirley,
Good that you are allowed to eat food that not will make you ill - as you wrote 4 kg in 3 days is too much and means that you are dehydrated.
Kind regards
Birgitta-A

[Chirley]

Hi, I've just spent 6 days in hospital having my copper treatment and my neuts have increased to 1.5 which is what I expect but my Hb has fallen to 92. It's never fallen before after having copper treatments, it's always risen. Plus I have a pretty aggressive diarrhoea (increased urea and creatinine and reduced eGFR). I had this for 3 days in hospital and they didn't seem concerned (15-20 times a day). Well, I'm home now and I can't even drink water without it it just passing through.

I'm starting to think that the vomiting I had was the start of a gastro bug. I don't have a fever, in fact my temperature is sitting in the 35s.

My doctor told me that he didn't come and see me in hospital one day because he had diarrhoea (and some patients in another ward too) and didn't want to expose me to the bug but I already had it....maybe I gave it to him!

Has anyone got any home made remedies for a gastro bug? I need to get rid of this or they will cancel my surgery.

[Cheryl C]

Hi Chirley - you sound really miserable! You could try activated charcoal. I've always found it very effective. You can purchase it in either capsules, tablets or powder. Should be able to get it from a pharmacy or health shop.
I sometimes just break a couple of capsules open into a big glass of water and mix it in. Make sure it doesn't have any artificial sweeteners added to it or they could compound your problem.

[Birgitta-A]

Hi Chirley,
Hope you have been able to try activated charcoal and to drink one spoonful water with salts, that we need, every fifth minute.

You are a nurse so I don't have to tell you to continue with ricewater and then with weak tea with suger and milk. In hospitals they try cocacola without bubbles but I never liked that.

Hope you feel better now!
Kind regards
Birgitta-A

[Chirley]

Thanks for that. Turns out I had Norovirus. I did use the activated charcoal *pulls face* I'm much better now. I think I probably had a drawn out version because my counts were low. I feel very run down but am improving fast.

I was worried that my surgery would be cancelled but it looks like it's going ahead. I've lost 7.2kgs in the last 12 days so hopefully that means my liver has shrunk down enough to make the surgery easier. As a side effect my liver function tests are normal for the first time in over three years (except ALP). It'd be great if they stay normal. What an unexpected bonus.

[Cheryl C]

Well done, Chirley! So glad you are feeling better. Not a nice way to lose weight, but great news about your liver tests.

[Chirley]

About 6 weeks ago I had a whole heap of blood tests prior to surgery. I never did get results from the surgeon so I assumed that the results were normal. Today I went to my GP and found out that I have low vitamin A, low vitamin B12 (again), continuing low vitamin D (despite taking D3 capsules twice a day).

I'm also taking a multi vitamin (without iron).

In the last 6 weeks I have had complications from surgery and had to be fed through a NJ tube for a couple of weeks so I'm assuming my vitamin levels will be even lower now.

I'm starting to wonder how much of my bone marrow problems are caused by ongoing deficiencies not just the copper deficiency. I've never heard of vitamin A deficiency before.

[Birgitta-A]

Hi Chirley,
Hope they give you the best possible "food" in the tube. B12 can as you know be given in injections. Extra A and D vitamines could perhaps be added to your "food".

Hope you will recover soon!
Kind regards
Birgitta-A

[Cheryl C]

I have missed hearing from you Chirley. Glad you are back in touch again but very sorry to hear that you had some complications from your surgery. I hope it was successful.

[Marlene]

I hope they maximize your nutrition too.

There are topical creams that can supply B12 as well.

[Cheryl C]

There is also a great mint flavoured B12 that you spray under your tongue. It's very easy to tolerate. The brand is BioCeuticals.

[Chirley]

I'm ok now and don't need the feeding tube any more.....it was horrible!

The B12 def was no surprise, I've had def treated a few times before. The GP gives me the injections. The Vitamin D is an ongoing problem. If you don't have enough copper, you don't produce melanocytes in the skin and therefore don't absorb Vit D from the sun. Ive been on Vit D supplements for a long time. Unfortunately, it never quite gets me into normal levels and my calcium levels drop too.

It's the Vit A that surprised me. It makes me wonder just how many other def I have that have never been tested. The underlying question is WHY!

It wasn't until my stomach twisted and caused an obstruction post surgery and I had to have the tube feeds that I found out I was lactose intolerant....it's such an obvious thing, but I never knew!

This whole experience has made me wonder just how much serious medical conditions such as MDS are caused/worsened by nutritional deficiencies.

I admit I've always been skeptical of the whole macro/micro food fad thing but I'm seriously reconsidering my disbelief.

Blood test on Thursday...Hb 95, WCC 3.0, Neuts 1.4, Lymphs 0.8 .....not too bad!