Thanks everyone, I'm chuffed! I am still having Baxters copper sulphate but in smaller doses on fewer days less often. The big difference is I have large amounts of steroids before during and after the copper infusions.

The Professor I used to see once said that my normal is different from other people's normal . That my "high" zinc level may not be high for me and that my normal copper level may be different from the so called "reference range". Before we were always striving to get the copper into the reference range and it was like chasing our tails. The more copper I was given, the more I lost in my urine. Now we aim to just keep the copper level at a place where my blood counts aren't too bad. In fact I haven't even had a copper level for months. My treatment is based on what my counts are doing. It looks as if my "normal" copper level is lower than the average population. So it's finicky to get right, when I have too little my counts crash and when I have too much my counts crash.

The only line that never reaches normal figures is my platelets and they have never been really low. Now they hover just below normal at 130-140.

I haven't had a BMB for 2 and a half years. The last one I had still showed dysplasia in all three cell lines despite my peripheral counts being normal at the time. I don't know if we gave it enough time for the copper to repair my marrow or whether I do still have MDS. My official diagnosis is still MDS and I'm still registered on the Federal Governments Cancer Registry.

Honey, I promise if I get the weight loss surgery I won't turn into an uppity *****. In fact I think all my skin will be falling around my feet but I don't care, I just want to be able to walk a little better.

We are having our Riverfire Festival in Brisbane this Saturday with massive fireworks displays and fighter jet dump and burns etc. the best view for this is from the hospital I go to (hotel rooms charge about $3,000 a night during Riverfire). Last time I had copper, I asked my Physician if I could be admitted for the night so I could see Riverfire and he agreed to give me copper infusions over that weekend. But, I'm doing so well, I can't justify having copper early, so I'll miss out on Riverfire again. The nurse said I should just get admitted for the night for "observation" but its not exactly honest for my health insurance so I won't do it.

I think my next door neighbour has had a baby and I didn't even know she was pregnant. I keep hearing a very small baby cry. My dog gets very distressed. Dee (my neighbour) has av12 year old son and told me she wouldn't have any more so if I'm a bit shocked, how must she be feeling. There's nothing quite as heartwarming as a new born baby.

Regards

Chirley

That is awesome news Chirley. Keep it up!!!!!

baby ***** cats?
 

Hi Chirley

Better check YOU don't have the joy of pitter patter of little feet. Kittens sound just like a baby crying so do puppies actually. Just a thought in case the neighbour didn't have a baby and you have a bundle of joy under a bush or the house. I remember the same thing when I was about 6 and the dog (who we did not know was pregnant had them under the house about where my bed was. Told dad I couldn't sleep because of the baby next door, which there wasn't one. You could be a proud mummy lol.

Wouldn't think you would be uppity btw. You have thin arms in your copper pics, I wouldn't think there was much to you.

Love and sunshine

Honey

:eek: I put P u s s y cats...nothing rude lol. Lets see if that works.

I think words mean different things in different countries. I think fanny means bottom in US. Won't let them now what it means here....wink, wink.

My dog and two cats are all neutered, so no surprises here. I see that the Government is thinking of introducing a law where ALL pets have to be neutered. It sounds good in theory but it will become so expensive to buy a pet that the poor and elderly will be discriminated against. When a chi already costs $700 and up, imagine if you can only get them from registered breeders!

I've just returned from the bariatric surgeon, he didn't make me feel very optimistic about getting the surgery. He's going to phone my Physician and then ring me in a couple of days with a decision.

I get so tired these days with the slightest effort. Just going to see the surgeon has worn me out. Maybe it's just age. Maybe it's psychological!

Talking about babies...I received a phone call from someone I used to work with in 1987 and haven't seen or heard from since then. She's my age (57) and she said she's got a 9 year old daughter???

I was very surprised to say the least but she said she had IVF with a donor.

I'm pleased for her, she'd make a great Mum.

Bed time

Awww Mama Chirl had a nice ring to it. Lol.

Ni ni Chirl :)

Copper and Zinc levels
 

Hi Chirley, hope you are continuing to do well. Your spirit and humour in every situation is remarkable!!:)

I am still in the 'understanding MDS' mode, and have many questions always for members on the forum, hopefully someday I will be able to contribute with answers for others too.

This is specifically on Copper/Zinc, my mothers test results are:

Serum Copper - 92.10 (normal range 85 - 190)
Serum Zinc - 127.60 (normal range 70 - 120)

The doctor did not seem concerned that zinc was higher than normal. Even though copper is within normal range, will a copper supplement to bring her levels in the mid range help with her MDS? or otherwise?

ANy advice will be appreciated. Many thanks.

Cashews
 

Just happened to be eating some cashew, so I looked up the values:

nutrient ---- amount - %DV
Copper ----- 0.75 mg 37.50%
Vitamin K 11.68 mcg 14.60%

http://www.whfoods.com/genpage.php?t...rofile&dbid=75

no wonder I like them so much...

I can tell you from my experience that its a circle that leads to the same place each time. You can drill down into DNA methylation, spend hours understanding it and at the end of the day, the answer is the same. Copper deficiency is much different than MDS. Chirly in all likelihood was misdiagnosed and most probably never had MDS. The symptoms are similar, the bmb results might show dysplasia but dysplasia in itself is not MDS.
You can read about copper deficiencies here:
http://en.wikipedia.org/wiki/Copper_deficiency

If Chirly's doctor had read it he might have got it right the first time and saved her a lot of time and aggravation.

On a side note a few years ago my bloods showed a B12 deficiency, yet my counts were fine. Before that I had a Vitamin D deficiency but my counts were fine, and now I don't have any vitamin deficiencies but I do have MDS.
Hope that helps.

The whole copper/zinc balance shuts down my brain. About four years after John's treatment, an doctor who specializes in "functional medicine" ran his red blood cell mineral elements as well as a copper/zinc profile. The red blood cell analysis showed low-normal copper and high normal zinc. While the blood serum showed low zinc and normal copper. Even the doctor didn't know what to make of it. The copper/zinc ratio, which I understand is an important factor in all of this, was high.

Copper is just recently identified as a possible link to MDS so it does make sense to try and correct it. I don't know if they checked the copper/zinc ratios in the study they did a few year back or if they just looked at the copper serum levels.

Copper/Zinc Ratio
 

Hi sbk007, thanks for the link. Every bit of information is helpful.

Hi Marlene, I found this info on the copper zinc ratio:
Zinc and copper have a antagonistic relationship and both competitively inhibit one another for absorption. In a healthy body the ideal ratio of serum Copper:Zinc is between 0.7:1 and 1:1

As per this my mothers test results show a ratio of 0.72:1, which is at the lower end of the ideal ratio. Any advice on if this should be higher, doctors here have no comments on issues such as these.

Thanks.

Hi, I'm not making any comments about copper metabolism, it's too complicated for me. Even the haematologist and Prof of Metabolic Medicine said that the whole process has not yet been researched and they were not fully informed.

The one thing that the Prof did say that in some people with malabsorption problems and therefore have low copper, the enterocytes take up more zinc and this explains why some people who don't take exogenous zinc still have high levels. He also said that it's impossible to have a low zinc diet (I was going to try anything).

As for my news.......Hb fell from 152 to 110 in 7 days, neuts are 0.9 but WCC is 3.9 because for the first time ever my lymphocytes are high. I have had below normal lymphocytes my whole life and they have never responded to infections etc so I don't know why they have suddenly jumped. I am having another blood test on Monday and see where we go from there.

I'm hoping the lymphs have risen due to some virus or something (feel okay). I was told a few years ago that sometimes chronic lymphopenia can be a fore runner to a lymphoproliferative disease and as Azacitadine is also associated with causing lymphomas etc it is a little concerning but there's nothing I can do until next weeks test. Fingers crossed it's just a glitch.

Chirley,
I'm sorry you have another thing to worry about. Good luck on next week's test!

Mseth.....I really don't have any solid advice on this.

Since too much intake of zinc will cause lower copper levels, i would look for possible sources of zinc exposure. But like Chirley stated, it's almost impossible to avoid it in foods. A few years back, zinc toxicity in denture wearers was attributed to the added zinc in denture creams. I think they removed zinc in denture creams here in the states. Also consider any topical lotions/sunscreens.

I would probably look to food sources first especially since her copper is in the low-normal range. But that's just my best guess.

Marlene, thanks for responding.

I will check with the internal medicine doctor and maybe a clinical nutritionist on their views, the hematologist has no problem with the test results. But I dont want to give up so easily.

Off topic
 

I have just been told I can't have weight loss surgery. The consensus of opinion (Surgeon, Physician and Neuro) is that I have no hope of improving so why bother.

This means I also can't have my hips fixed or the broken bone in my back stabilised.

I'm in constant pain and the medical recommendation is narcotics and bed rest for the rest of my life. This is not what I consider a quality life. I'm 57 years old, feel like I'm 30 on the inside and feel like I'm 80 in my body. My GP tells me I'm lucky because I'm intelligent and articulate. Personally, I think having clarity just makes me more aware of my limitations.

Last night at 3am after being kept awake from pain, I finally gave up and took 10mgs of Diazapam, a Mogadon, 2 Nurofen, a slug of gin and hot packs on my left leg, right hip and back. I did sleep for an hour and a half until the pain woke me again.

Yesterday's blood tests were ok. Hb 100 (152 to 100 in 2 weeks) WCC 2.00, neuts 1.0 and lymphs have gone down again (thankfully) to 0.5, platelets weren't mentioned so they must be ok. I was supposed to hear from the Physician about going into hospital for copper this week but I haven't heard anything and I'm not in the frame of mind to chase them up and remind them.

So tired.

Weight loss surgery
 

Hi Chirley,
Too bad with the weight loss surgery! As far as I understand that operation can lead to severe complications with nutrition and ectrolytes like kalium. I have friends who had this type of operation done and after several months one of them still had serious problems.

To have a broken bone in the back stabilised is not an operation where the whole body is engaged (my brother-in-law is a neurosurgeon). I have friends who have been operated for spinalis stenosis - not enough room for the nerves in the backbone - with positive results when they were quite old and not so fit.

What kind of hip problems do you have?
Kind regards
Birgitta-A

I would think the hip/back issues are not elective and would therefore be done. Please push them to address the issues.

Hi, I have had surgery refused on my hip and my GP won't refer me to anyone besides the physio for my back.

I have impingement in both hips but it's the right hip that has been painful for over two years. An MRI showed an anterior, superior tear of the labral cartilage with tendinitis, bursitis and arthritis. The orthopaedic surgeon said it was too bad for keyhole surgery and would not do open surgery because of my mobility problems.

As for my back, where do I start? I was born with 6 lumbar vertebra instead of 5. The sixth was deformed and when I first started nursing it broke and I had bone chips in the spinal canal. I had a spinal bone graft done with success. Six months later I was at work when a patient on a theatre trolley was pushed into me and wedged me between the trolley and the wall and twisted me. I developed an unstable traumatic spondylolisthesis (one vertebra broke off and moved forward on the other). I had urgent surgery with more bone grafts and I have only had minor back problems since then (probably less than most people). When I had the MRI for my hip they also did a CT of my back and they found a degenerative spondylolithesis at a higher level. It didn't hurt so I ignored it. In the last six months I have developed BAD back pain which limits my activity. My left leg has also gone dead intermittently and it's happening more frequently. Because no one wants to do any further tests my GP isn't sure if my left leg problem is caused by my back or by my spinal cord degeneration. The physio says it's my back and he thinks my back and my hip both need surgery.

I was just interrupted by a phone call from the Physician, he doesn't like the dip in my WCC so I'm being admitted tomorrow for more copper. At least I know what's happening now.

Better go and order some more dog and cat food for when I'm away.

Bye.

Spine
 

Hi Chirley,
Since most of your symptoms depends on that you got your dx (copper defiency) very, very late though you had met lots of specialists of different types I think the Health Care System ows you the very best treatment.

I can't really understand why the degenerative spondylolithesis couldn't be operated.

Then I would like to know why your hip couldn't be operated with open surgery due to your mobility problems - with your stamina you would do everything needed to get a good function in the hip.

Hope the copper treatment will have a positive effect!
Kind regards
Birgitta-A

Birgitta I am feeling very down at the moment. I'm having copper treatment to keep me alive but sometimes I wonder if it's worth it.

I'm being treated as if I have no future. I try and try and try to optimise the function I do have but I get no help from the medical profession (my Physician is the exception, he is supporting me in my fight to fix other health problems).

I asked my GP for a referral for psychiatric help because I feel very depressed but he just offered more Valium which is a sedative and I really don't think I need something to make me even more lethargic. Whenever I tell anyone that I'm having problems coping with the stresses of a chronic illness they just tell me that I'm doing well. The fact is I smile and say I feel very well and make jokes etc but inside I feel very different.

There is no way in the world I would ever take my own life but I quite often wish I wasn't alive. It's not that I want to be dead, I just don't want to be alive.....if that makes sense.

If I didn't have elderly parents I'm pretty sure I would cease the copper treatments.

My old Dad is my rock, my support and my best friend and he has even told me that he gets sad that he has a better quality of life than I have. He's 85 with heart problems and he has been offered spinal surgery for stenosis caused by arthritis. I'm 57 and no one will offer me any treatment except pain killers.

I feel I'm just waiting day by day for the end to come. It's a bit like when I had pneumonia in both lungs......just concentrate on one breath and then the next breath and then the next and on and on.

Chirley,

I hope you don't mind me butting in to say that I'm sorry you feel so low right now. I know that you don't want to be dependent on painkillers and it's frustrating when you know you have something obviously wrong to everyone with your back and they won't fix it. I hope your pain goes away some and your day brightens a little.

Psychiatric help
 

Chirley,
You know things are maybe different in Australia than in Sweden but there must be possibilities for patients with severe diseases to come to psychiatrists who are specialists in supporting patients with chronic diseases. I was working with HIV infected patients during 5 years - many of them young men who at that time (1989-1993) had a dark future.

Good that your father is a real support!
Kind regards
Birgitta-A

Hi, I've been thinking about my low mood and it really isn't so much about my physical problems but it's more about the lack of any faith by the doctors that I have any potential to improve. I'm told that if I continue the copper treatment I MAY, live a long time. Living a long time like this is not a nice thought.

It's very hard to be told time after time that you're not worth trying to help fix medical issues. I have kept on pushing for the medical care I need to help my quality of life and the answers are just no and no and no. It's wearing me down.

I no longer trust my own judgement and instincts. Deep down I feel that I am worth trying to improve but I having creeping doubts that perhaps the doctors are right and I'm just in denial. Maybe I ought to take the pain killers and lie around and give up the fight for a better quality of life.

I just don't know.

I'm going to have an honest chat with my Physician about how I feel today when I see him. I'm scared by being honest that he'll just withdraw emotionally like everyone else has that I've tried to open up to, but I have to take that risk.

Chirley,

I am sorry you feel like you do, I can completely understand, I have had the runaround, rejection, I'm an anxious lady type remarks etc, as I am sure others have before as well. But you know the pain, difficulty, frustration etc that you live with and I think they don't look at the whole picture just the symptoms sometimes. Where is doctor House in real life huh. I go with my gut feelings now, and will go get a second opinion. It saved me with the DVT.

Have you tried any of the free counselling services through LF, they may help just to let you vent, so you can get your fight back.

Honey