Copper treatment

[Chirley]

Hi, I'm in hospital. I've had another transfusion and my neuts are nearly zero.

I've had one dose of copper sulfate IV with Hydrocortisone premed. It was 4mgs which was supposed to run over 4 hours but some nurses knowing better than the pharmacy or my doctor think its okay to run it over 3 hours (sarcasm).

To be fair this is what happened in the past and part of the reason I stopped having copper. I just thought it was inappropriate for the nurse to change the treatment duration to suit herself.

I am not having copper today but the doctor insists I resume tomorrow because my condition is "dire"....his words, not mine.

Regards

Chirley

[Marlene]

How do they get away with that? Will your doctor or the pharmacist intervene?

[Birgitta-A]

Hi Chirley,
Is the reaction this time as bad as the reaction you had the last time you got copper IV?

Perhaps you can tolerate copper a little better this time if the nurses can follow the instructions. When they know that your condition is "dire" they really ought to be very careful.

Hopefully your neutrophils will increase as well as your HGB.
Kind regards
Birgitta-A

[Chirley]

Hi, it turns out that the nurse is a new graduate and made a mistake with the flow rate but to be honest I don't know if it effected my reaction. This is what happened before even when it ran slower.

I'm having another infusion as I type. I had a seizure (well 3 seizures actually) this morning and the ICU Doc insisted I have the copper because my neuro condition isn't very good.

I feel like I'm very lucky because I couldn't talk when I woke up but it's mostly come back now. I'm heavily drugged so I apologise if I don't make sense. I also can't see much of what im typing so I hope I'm hitting the right buttons.

I have some throbbing bone pain in my back which I think means the bone marrow is regenerating. Odd when pain is a good thing.


I'm very tired and mellow and need to sleep.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Too bad with the reaction to the copper infusion! Hope it won't be so serious this time!

How frightening with the seizures - good that you already feel better.

Hopefully you are right about the bone pain in your back and that your bone marrow is trying to start making new blood cells!
Kind regards
Birgitta-A

[Glenda H]

Hi Chirley

Which hospital are you in? I hope you are getting on okay now.

Glenda

[Chirley]

Hi, I feel better today than I have in many weeks.

Just the usual rash with the copper but now that I'm having pre and post hydrocortisone it's not as hot or uncomfortable.

Hb is 90 (3 units of blood on Thursday and Friday) WCC 1.00 don't know the neuts or platelets. I'm happy that things are heading in the right direction.

More copper today and tomorrow and all being well I can go home.

I'm in Mater Private and besides that first issue with the nurse running the copper too fast, the care here has been wonderful.

I still have a little bone pain but its not too bad just a little background throbbing.

Looks like my GP and specialist were right, I'm very lucky to have had those seizures in hospital because if I had had them at home by myself I think I would have died. I needed to have some special drug to stop the seizures and that drug is only kept in ICU. The usual drugs had no effect. I don't know the names of the drugs because I wasn't conscious at the time. I do have a sore neck and throat but that's not much to be left with.

I'm in a much more positive frame of mind today.......it feels good to feel good.

Regards

Chirley

[Birgitta-A]

Wonderful Chirley that the copper had positive effect at once!

How terrible with the seizures! Hopefully they will find a drug that will prevent seizures.
Kind regards
Birgitta-A

[Marlene]

So glad you're feeling better.

[Chirley]

Does regenerating bone marrow cause jaw/face and teeth pain? They are throbbing just like my back and base of skull but don't want to say anything in case it puts my discharge from hospital on hold. I've never had the pain in my face before.

The doctors aren't worried about the seizures, they think its related to copper deficiency and they shouldn't come back now I have had 3 copper infusions. I still have a little trouble finding the right words sometimes but that's improving too and I've been told its only a temporary thing.

It's three in the morning and the pain med hasn't kicked in yet but I'll probably be sound asleep by the time I'm woken for my four o'clock neuro check and observations. You have to love hospital routines :)

Regards

Chirley

[Neil Cuadra]

Does regenerating bone marrow cause jaw/face and teeth pain? They are throbbing just like my back and base of skull but don't want to say anything in case it puts my discharge from hospital on hold. I've never had the pain in my face before.
Chirley,

I don't know what might be causing your jaw/face/teeth pain. If the pain continues at the same level then reporting it to the doctor might be a wise idea. I know you want to get out of there and I hope it's not a sign of a new problem, but if there's a chance it's something serious then getting it evaluated could be in your best interests.

[Chirley]

Thanks for the advice Neil. I did mention it to the nurses and they think it has something to do with injury during the seizures.

We have sorted out a lot of my copper issues. Hydrocortisone before and half way thru then Clarytine an hour prior to and steroid cream post. The rash is substantially better.

My bloods today show Hb still hasn't moved but WCC 3.2 and neuts 1.2 there is a big left shift with lots of bands, metas and myelos along with high NRBCs. How much of this improvement is copper and how much is marginalization due to steroids will take a few days to determine but I feel better than I have in a long time so I don't care about the whys.

The plan from now on is......there is no plan. Basically if I start feeling unwell I will be admitted and do it all again.


Regards

Chirley

Ps my platelets are a little low so the bruising is from tape.

[Birgitta-A]

Hi Chirley,
Hope the jaw/face and teeth pain has disappeared! It should if it depended on the seizures.

Very good with the treatment to prevent rash!

As far as I know steroids can increase platelets and HGB but when your WBC have started to increase I think it is due to the copper.

Very positive that you are feeling better :)!
Kind regards
Birgitta-A

[tytd]

Hi Chirley,
So glad to hear that you are feeling better and that you have been able to tolerate the copper. Hopefully the seizures will not return. I assume they checked all your other electrolytes at the time of the seizures to make sure they were OK as well. Just out of my curiosity, I wondered whether you had been tried on copper chloride as well as copper sulfate and what volume of fluid do they mix the copper in? I think both forms of copper are used in TPN (total parenteral nutrition), in much lower concentrations, but I am not certain of which is more commonly used. A pharmacist who mixes those solutions would probably be able to tell you. I think the trouble is that copper deficiency is so rare that many docs do not know the ins and outs of replacing it so they are learning with you. Have you ever asked your hematologist how many prior cases of bone marrow failure due to copper deficiency that he has treated? I am sorry that I am being so nosey but your case is fascinating and instructive. I wish that your copper problem had been detected earlier so that you would not have had to endure the loss of neurological function. You should record your story and have it published in a medical journal so that many docs can learn from it. I know you love being a guinea pig :) but your spirit is incredible. I hope that you will be able to continue the present regimen of copper and be able to continue to feel better. Tytd

[Chirley]

Hi, I feel great.

I'm at home and I'm being overwhelmed by my dog and two cats......happy days.

I have no pain at all, I'm not breathless, my rash is improving and I can walk around my house with a walker instead of using the wheelchair.

Tytd, I have Cu Sulphate. Originally we tried to get Cu Chloride but couldn't access it (I was going to fly to Rochester to get some). I have a friend who is a TPN nurse and she gave me the contact number for the drug company pharmacist who supplies the home TPN patients. I passed this on to my haematologist at the time and that's how I got the treatment. The Cu is supposed to be diluted in Normal Saline at 1mg/100mls and run at a rate of between 0.5 to 1.0 mg/hr. I noticed this time that the nurses were using a 1mg/50ml concentration, I don't know why they changed it, I assume on pharmacy orders.

None of of my doctors have ever treated a copper deficiency before. The haem has subsequently found one other person with Cu deficiency which was easily corrected and they recovered completely. Unfortunately, I have renal Cu wasting so my Cu level will never be stable. As for the electrolytes, I have no idea. I wasn't very aware at the time, I did wake up covered in cotton wool balls and tape all over the place.

My neuro has written a paper on my case which he presented at an international conference, he also submitted it to a journal but I don't know if it was printed. I often get presented at Grand Rounds and I am used for Doctors to do their final practice exams on. My physician brought two Registrars to examine me on Sunday (the same day as my seizures) as part of their final year practice exams. I was under strict orders not to volunteer any information. The girl was so nervous she knocked everything off my bedside table and then knocked the pedestal fan over and the boy kept stuttering. I felt sorry for them. My physician seemed to be enjoying their discomfort. He came back later to tell me they both had my diagnosis wrong but he knew they would. Apparently one said MND and one said T2 spinal injury. My doc said the girl was the better of the two but they would both eventually make good doctors.

I'm just going to shower in the luxury and privacy of my own bathroom.......heaven.

Regards

Chirley

[Chirley]

My physician was supposed to have last weekend off and arranged another doctor to cover. When I had my seizures they couldn't contact him so they rang my physician anyway. He came to see me on his weekend off. (Then did the Reg exams).

Now I get an account from the doctor they couldn't contact for $195. It's not much but it's really annoying to pay for a non service. What would he have charged if he had answered his page? I shudder to think.

It's good that I'm feeling well enough to complain. :D

Chirley

[Marlene]

Yeah!!!!! So glad you're feeling better.

[SLB]

wow.. you are very impressive, Chirley! I admire your fight and strength to keep going! glad to hear things are on the up this week.

[slip up 2]

Chirley....sure glad you got your fight back.....kate

[Cheryl C]

So pleased to hear that you've turned a corner, Chirley! May this success continue.

[Chirley]

Hi,
I had a blood test yesterday and I received a phone call from my physician today. He said my Hb was fantastic and almost normal. I don't need another blood test until next week and I don't need to be admitted for more copper until the following week.

That will be 5 weeks between copper treatments. That's great. I used to have two weeks between copper treatments and it was overwhelming.

My neuts are still a little low and I have a UTI and am on antibiotics but overall I feel pretty darn good.

Regards

Chirley

[Marlene]

great news!!!!!!

[Lbrown]

Good news! I was curious what abx you are on and how long you've been on them.

Deb

[Chirley]

Hi Deb, I'm on Amoxil but only started on Thursday.

I don't have a great deal of bladder sensation due to my neuro disorder so I wasn't sure if I had an infection or not. I suspected something was wrong so I mentioned it to the GP. The dipstick urinalysis showed blood., protein and leukocytes so I was started on the antibiotics.

I'm very happy that I now have doctors (GP and Physician) who listen and who will work with me instead of just dictating their orders. I've always thought that a week of copper treatment every third week was excessive.

I don't feel any where near as anxious about treatment as I used to. I still get the side effects but I can handle that when its only for 10 days or so every five or six weeks and not half my life.

Regards

Chirley

[Birgitta-A]

Positive news except the infection, Chirley!
Kind regards
Birgitta-A

[tytd]

Hi Chirley, That is wonderful that the treatment cycles are longer and that your counts are staying up. Hopefully they have finally figured out how to treat you. I hope the trend continues. tytd

[sbk007]

Hi Deb, I'm on Amoxil but only started on Thursday.

I don't have a great deal of bladder sensation due to my neuro disorder so I wasn't sure if I had an infection or not. I suspected something was wrong so I mentioned it to the GP. The dipstick urinalysis showed blood., protein and leukocytes so I was started on the antibiotics.

I'm very happy that I now have doctors (GP and Physician) who listen and who will work with me instead of just dictating their orders. I've always thought that a week of copper treatment every third week was excessive.

I don't feel any where near as anxious about treatment as I used to. I still get the side effects but I can handle that when its only for 10 days or so every five or six weeks and not half my life.

Regards

Chirley

Glad you are feeling better. Wondering if a mild anti-anxiety before treatment might help Just a thought.

[curlygirl]

Glad you get to extend your treatments and that they're going better!

[Lbrown]

I'm glad you have more understanding and open doctors now Chirley.

Deb

[Chirley]

Hi,
I just happened ;) to Google my chromosome abnormality and came across a website which pertained to a research trial asking for participants with the 15 q deletion. The page didn't have a date on it and it was for US and Canadian people only but I emailed the address given, gave them my details and sat back expecting not to hear anything.

Imagine my surprise when I received an email from the scientist running the trial. The trial is still current and they are willing to screen me as a participant. In that one email from him I already found out that no other person (that he has dealt with) has a copper transport problem associated with this deletion and that my disorder is, on the balance of probabilities, coincidental. This gives me hope that it may also be curable.

I'm very excited to have found this research trial and I have my fingers crossed that I'll be accepted.

Regards

Chirley

[curlygirl]

Great news! Good luck!

[Birgitta-A]

Very interesting, Chirley!
Kind regards
Birgitta-A

[Chirley]

As I'm entering a research trial I requested an official copy of the results of my chromosome analysis (karyotype micro assay). Instead of receiving this, I received a copy of the gene study that was done at a Swedish University and that I had been told was negative for the Apt7ase mutation. That was all I was told about this test.

Well, it is negative for THAT mutation but they performed gene studies on neighbouring areas as well. They found three mutations, one of which they have never found before (but is associated with an amino acid called GLU) and another one which has been found in another patient with a copper transport problem. Genetic counselling and ongoing reinterpretation are recommended. I don't think anyone has looked at this report. I suspect they looked at the summary at the end which says negative for APT7ase mutation and filed it.

so now i have 3 homozygous mutations, a heterozygous mutation and the chromosome 15 deletion (that we know about).

I'm very pleased I never had children to pass these on to.

Now it's back to the drawing board and try to get the report I originally requested.

My Physician just rang. My blood test from yesterday is still very good. I'm being admitted next Thursday for copper infusions and will be in hospital Thursday through Monday but only because he is going away for a few weeks and wants to be proactive in keeping my counts looking good.

So now I'm having a smaller dose of copper on fewer days with more time in between and my counts are holding steady and mentally I'm coping a lot better. It's so good to have a doctor who listens and is willing to work with me.

Regards

Chirley

[Birgitta-A]

Very positive, Chirley, that you at last have a doctor who respect you and your experience of your complicated disease!
Kind regards
Birgitta-A

[slip up 2]

Chirley....so happy that you are doing better than a few weeks ago....did you get your eyes fixed up.....kate

[Chirley]

Hi, my eyesight has improved with a combination of having the copper (at least now I know there is a definite cause/effect) and new glasses.

I still have intermittent loss of vision in specific spots. For instance right upper quadrant just disappears from time to time.

I have an appointment to see a neuro ophthalmologist in November but I think I'll cancel because there is a three hundred dollar gap between Medicare refund, health insurance and consultation fee. It's not the money so much as the overcharging that annoys me. Some doctors are just plain money hungry and I don't want to support that greed. Medicare is supposed to cover the entire cost for pensioners (me) or 75% for non pensioners so the gap in this case is exorbitant.

I think deep down I must be a bit of a socialist.


Regards

Chirley

[slip up 2]

Chirley.....keep the app't then tell him you are going on this big trial....maybe his name will be mentioned in the name of research .....he will forgo the $300.00....Ego is often bigger than money...kate

[Chirley]

Hi, I'm in hospital (bored,bored,bored) for my copper infusions.

My blood tests yesterday had all dropped (but still very good in the scheme of things). Hb 100, WCC 3.0 (no neut count given), platelets 130. So it looks like I will be given copper infusions every sixth week (5 weeks between). That's so much better than the two weeks in between that I had been getting.

I'm grateful that I feel we'll enough to be bored.

I asked my Physician if he would write a letter to the bariatric surgeon recommending weight loss surgery. First off he said no! Then he said wait and see if my health stabilises. Then he said...."I'll think about it".

After he left I asked the nurse if she thought he'd agree. She said that it was all doctor talk for NO.

I've just been interrupted by a nurse with a stat dose of Hydrocortisone. The doctor saw my copper rash and was very impressed at how gross it looked :o. Luckily enough it looks worse than it feels this time.

[slip up 2]

She's...back.....that is the Chirley we know & love....you must be feelin' a whole lot better....
You must be getting ready for summer as we are getting ready for fall...the leaves up here are starting to turn...make sure you eat your veggies....Kate

[Chirley]

I'm very surprised, the Physician has agreed to refer me to a bariatric surgeon. I think it was because I saw the physiotherapist today and he wrote a very negative report about my mobility.

The physio wants me to wear a back brace, a knee brace and an ankle brace so that I have some core stability when I walk with my walker. He thinks its important I have hip surgery to help correct my gait and improve function.

I need to be fitter before any one will operate on me......ergo...bariatric surgeon.

Chirley

[Chirley]

Hi, I had my fourth dose of copper yesterday. Just towards the end I started getting that familiar throbbing bone pain that comes with bone marrow regeneration.

I'm confused. It's good that my bone marrow can regenerate but this time my counts were all pretty good (for me), so I don't understand why I would get the regeneration pain.

Does anyone have any idea how long it takes for the peripheral counts to drop after the bone marrow starts failing? I know that my first to fall is usually the neuts, then the RBCs, then the platelets.

I am starting to think that my marrow only just lasted the 5 weeks (counts did fall in last week) between copper treatments.

Would this continuous depletion and replenishment of my marrow have any long term effects. Would there be more likely to be chromosome damage or fibrosis.....something like that?

If there are drawbacks to treating at 5 weeks I would rather treat at 4 weeks and avoid long term consequences. Especially now that the doctor listens and the side effects of the copper are more tolerable. I know my marrow is sparse anyway because every MRI comments on empty marrow in my bones.

Where can I get answers to these questions? I'm not seeing a haematologist at the moment and I doubt if the Physician would know.

[Birgitta-A]

Hi Chirley,
As far as I understand there are no rules for how different drugs will affect the bone marrow - how soon the HGB, WBC and platelets will increase or decrease when the drug isn't working any longer.

When I started to take Thalidomide the platelets responded after 4 weeks, the HGB reached max after 15 months and I could stop taking Neupogen after 17 months.

I have never felt any bone pain except when I had to take Neupogen every day during 9 days. As you know it is a cytokine and stimulates the bone marrow like the copper you are receiving.

Perhaps your bone marrow will function better if there always is enough copper for the stemcells.
Kind regards
Birgitta-A

[Chirley]

I feel a little bad for posting this when others on the forum are going through a terrible time but......it's 4 weeks since my last dose of copper and my Hb is ....152!!! It has not been that high in 10 years. I'm not used to it and feel a kind of hot, flushed feeling but I think I'm just feeling like most people do.

I only had a finger prick in the surgery so no WCC but I feel great. Now, to work on this decrepit body of mine and try to make it function better. I was supposed to have a "real" blood test today for hospital admission for copper next week but the Hb is so good I'll have the "real" blood test next week and see if I can have 6 or 7 weeks between copper treatments.

I see the bariatric surgeon in two days so hopefully my medical condition is good enough for surgery.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
It is almost incredible that your bone marrow has responded so well to the copper treatment! Congratulations!!!
Kind regards
Birgitta-A

[Chirley]

Yes Birgitta, it's almost unbelievable but I'm over the moon about it. Even better is that if we let the copper drop and the Hb drop a little too then have copper and let my body manufacture the blood, it uses up my iron stores.

It's an easy way of doing the same thing as a venesection. When my ferritin drops to normal levels, I'll have the copper infusions often enough to keep my Hb in normal range so I don't become iron deficient.

The move to this doctor was the best thing I've done for my quality of life and my health. I feel a little guilty saying this because I really liked and trusted my haematologist too but sometimes both the doctor and patient can change attitudes and its best to move on.

I'm also pleased to read that the Revlimid is working for you. I hope you don't get many side effects.

I hope you had a nice summer. I suppose the days are getting cooler and the days getting shorter. I don't know how I'd cope with a Swedish winter. It's bad enough here and our day time temperature is around 18-22 degrees Celsius in winter.

Regards

Chirley

[Honeybun]

Excellent news Chirley. Good to see you happier.

There are a few girls at my work who have had the surgery some with good results some not so good. They all had to lose weight first before they were accepted. Would such dietary changes before or after affect your condition or create another deficiency?

On another note the girl at work who had the best results out of all of them, didn't deserve to, every time I walked past here she was gobbling down chips or chocolate, while the others snacked on a piece of celery or similar....go figure. Ugh! Just made her even more snooty and ruder than her larger self in a now I am fabulous way...bleh..makes you wonder how some are blessed, when others more deserving get the harder road.

Honey

[Cheryl C]

Chirley - after reading your posts I asked my haematologist if I could have my copper levels tested next time and she has agreed.

[Sally C]

Hi Chirley,
That is such great news about how you are doing. And after so much sad news lately, I think everyone is glad to read something to be happy about!
Thanks for the uplift and keep up the great work!
Best wishes,
Sally

[Whizbang]

Incredible response...

I've read so much on Marrowforums about the importance of vitamins & minerals (B-complex, Folate, copper, Vitamin D3)... And it seems to be working...

In my case I've always taken B-complex, and multivitamins, and I believe that the D3, and 'new' multivitamin with copper that I've started taking, has definitely made a difference...

Continued good health Chirley, and everyone else on here... :cool:

[Lbrown]

Wow Chirley,

That is amazing. You must be so happy.

Did you change anything about your treatment like the type of copper?

Deb

[Chirley]

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

[Marlene]

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

[Honeybun]

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

[Honeybun]

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

[Chirley]

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

[Honeybun]

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

Ni ni Chirl :)

[Mseth]

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.

[Whizbang]

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?tname=nutrientprofile&dbid=75

no wonder I like them so much...

[sbk007]

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.

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.

[Marlene]

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.

[Mseth]

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.

[Chirley]

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.

[curlygirl]

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

[Marlene]

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.

[Mseth]

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.

[Chirley]

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.

[Birgitta-A]

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

[Marlene]

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

[Chirley]

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.

[Birgitta-A]

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

[Chirley]

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.

[curlygirl]

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.

[Birgitta-A]

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

[Chirley]

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.

[Honeybun]

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

[Chirley]

I've just been admitted and seen my doctor. I asked for a referral to see a Psych while I'm here. He said "yeah, sure, no problems" then he listened to my chest etc. he thought for a while and said why did I want to see a Psych. I just said I didn't want to discuss it with him and that was what the Psych is for.

To his credit he just laughed and said "fair enough". So the Psych is booked to see me tomorrow morning.

I'm in a room by myself which is nice but the old lady next door is demented and hasn't stopped screaming since I got here. The Nurse Manager keeps popping her head in and apologising but it really doesn't bother me. Reminds me of my working days when I would go to the secure medical wards for dementia patients. The things she's screaming out are rather funny. She has "runny stuff coming out of her bum". Oh, I so hope not.....poor nurses!

Talk about my weight piling on. I have "hospital pyjamas", you know, the good ones you don't wear at home! Well, I put them on when I got here and they just barely fit. They were ok last time. I'll probably need to ask for a hospital gown when they start the steroids and fluids and I blow up like a balloon.

Uh oh, there's more runny stuff again, but this time it's coming from her ears???......so glad I'm only a patient and not the nurse.

[Sally C]

Hi Chirley,
I wish there was something I could do to help you. You always manage to come up with a sense of humor in spite of how you feel or your situation. You have been a great help to so many on the forums!
I hope things improve for you - both mentally and physically. You have been through way too much.
I'm so glad your Dad is such a great support. And I hope you know how much you are appreciated on the forums.
Take good care - I wish you the best.
Sally

[Lbrown]

Chirley - it's not you. I don't see how it is even ethical for doctors to refuse treatment on someone who wants and needs it.

Good luck with the psych.

Deb

[Birgitta-A]

Chirley,
Perhaps your GP doesn't know what every psychiatrist knows - all antidepressants will decrease chronic pains:
http://www.mayoclinic.com/health/pain-medications/PN00044

The problem with antidepressants is that we never know what patient will respond to a special drug - the same as with MDS. Have you tried antidepressants before - if so you perhaps already know which drug is the best for you.

Then most drugs start with adverse effects like anxiety and sleeping problems so you have to start with a low dose combined with Valium (as you take for spasticity) or a similar drug. After 3 weeks many patients feel better in the evenings but some patients have to try a longer time before it is time to try another drug.
Kind regards
Birgitta-A

[Chirley]

Thanks everyone. I've been awake since before 3am (hives are burning).

Birgitta, I've never had any type of psych drug. Just the Valium for the spasticity and I'm a bit reluctant to take them. I've not even been able to drink alcohol flor about a year or so. My liver isn't great but really, I just don't like the taste any more.

I'm looking forward to seeing the psychiatrist. I considered asking to see a psychologist but I think my problem is more a medical problem than anxiety/behavioural problem

One thing I have noticed that when my copper levels drop, I get depressed. I'm pretty sure there is a physiological connection.

It's going to be good to talk honestly to someone who has no vested interest in my life and won't make judgements. I'm wanting someone who will help me see things clearer and perhaps even tell me when I'm just plain and simply wrong. I need to know if I'm deluded for thinking I can improve. I may not like the answer but it's better than doubting and second guessing every thought I have.

Just had my obs taken. Everything good. Just a bit wheezy and oxygen a little low but that's not surprising. Got to love a low metabolic rate that gives me a body temperature of 34.8 while feeling hot, perspiring all over the place and with a fan on me!

Only an hour and I can have a shower. I don't like to have one before 6 in case it disturbs people. The demented lady next door has finally stopped screaming. I think the nurses would be very unhappy if I woke her up.

[sbk007]

Hi Chirly, hope you are feeling better. Sorry you have to go through all this. I think anyone would be overwhelmed and depressed. When we feel like crap we tend to get depressed but when we are felling well the depression is easier to handle.
The Demented lady is going to be screaming once she wakes up.
Keep in mind she cant help it. Its part of her disease. I
Hope the Docs get you going again, you seem to come bouncing back so I expect it'll be the same this time around.
Feel better! _ Steve

[Chirley]

I only have one question. Why didn't I see a psychiatrist before now? He was delightful. He just did a preliminary fact gathering session and has already made me feel better about myself than I have felt in a couple of years. I even have a tentative diagnosis of clinical depression caused by my neuro condition involving the chemicals in the brain.

He assures me that I'm not in denial about my condition and that I should never have been told that I have no hope for physical improvement because my condition is so rare that those kind of assumptions are very tenuous.

He's coming back tomorrow to do a proper session and start anti depressants. He wants me to have the tablets while I'm in hospital so I can be monitored.

Thank you everyone for supporting me. I suspected I was losing my mind and was doubting every thought I had. I feel more confidant now that my thinking isn't deranged. In fact he assured me that my thought processes were perfectly normal in the circumstances.

Birgitta, this psych is late middle aged, very overweight, dressed sloppy casual and very informal. He's very easy to relate to. I'm thinking your career must have been very rewarding. The mind is as important (maybe more important) than the body.

[Honeybun]

Chirley

Your not deranged, as I said before we probably all go through this at some stage. The last few days of back to back to back appoints with hospitals and doctors for my dvt paid a toll on me. You go to one doc he says one thing you go to another and he says something else you don't know what to believe and sometimes you do think you are going mad. Some make out it is serious some treat it as nothing.

I went to my orthopaedic surgeon for my 3 month follow up and he didn't want to talk to me about my knee because of my dvt and was telling me to go and get an xray for my chest because I was having breathing problems,
( he still charged me for the consult though). As many times I told him I tried to make an appointment that day but I already had so many appointments to fit it in, and still had to go for my injection in one hour which was at 4.45, and everything shuts after 5pm on a Friday. He still didn't let up when I was at reception paying, that I just had a mini breakdown, tears welled up and I just walked out, leaving poor Bjay at the counter with the aftermath and the bill. I was trying to make him understand that people are not just going to move appointments for me! Anyway long story short they rung ahead and got me in at the hospital I was at, and probably just as well as they found a large clot in both sides of my lungs. The radiologists were very concerned and wanted to get an ambulance to transport me to another hospital, but we got their on our own. They did ring ahead and tell them the emergency and their concern, but when I got their I was told their was nothing they could do, and to go home and rest. Here we go again. Frustrating!!!

On another note, the clot probably explains my previous posts about breathlessness etc, it wasn't my haemoglobin, or the thought that I had whooping cough, I probably had this clot for over a month now. It was just as well my leg swelled up.

Chirley, Docs do not see all that goes on in our lives, from the appointments, to work, to family to everything else we juggle. Sometimes we just need someone to talk to as well, that understand.

Get well soon Chirley, send me a PM and let me know how you are doing. I am their if you want to vent.

Honey

[Birgitta-A]

Hi Chirley,
Good that you liked the psychiatrist :)! Hope you will continue to feel better! He is right when says that nobody knows anything about your future - some doctors think they are God.

I have stopped reading abstracts about prognosis in MDS because I have lived much longer than expected. My doctor is very optimistic and has never told me anything about my prognosis. He answers my questions and we discuss my treatment. The problem is that I have to look after my neutrophils myself because he always thinks they will start to increase while I prefer to take Zarzio (Neupogen) twice a week instead of once a week if I think they are too low.
Kind regards
Birgitta-A

[Chirley]

Isn't it interesting that a lot of the stresses of chronic illness is caused not so much by the illness but by dealing with the medical profession?

When I told the psychiatrist the my Physician asked me if it was alright for me to be admitted for treatment on Friday that I got off the phone and cried because it's the first time since I've been dealing with this illness that some one has asked me permission instead of ordering me.

He said that most medical people don't understand the lack of control we feel as chronically ill people and how important it is for us to feel control over our own lives.

(The psychiatrist really does ask the questions like in the movies...how was your childhood, how is your relationship with your parents). I thought he knew that i was a pretty conservative person when he said "I don't need to ask if you've ever taken illicit drugs, I already know the answer". Yep, it's obvious, no rebellions for me, quiet, conservative, conformist and boring.

I don't know the name of the tablet I'm going to start taking but he is coming back this afternoon and he'll order it then.

I had a pretty bad night last night I had a severe reaction to the copper despite three lots of IV Hydrocortisone and oral Claratyne. Rash/itch/burning, stomach cramps/diarrhea, wheezing/cough and low BP and oxygen Sats. I'm glad the hospital has run out of the Copper Sulphate and today will be a rest day until they can get some more from Baxter tomorrow. I'll be here an extra day but that's ok, I'll just chill out and enjoy the room service.

Ill PM you Honey. Sounds like you've had the run around too. I used to think our health system was world class but realisation has dawned that it has started going down the gurgler.

[Chirley]

I started Doxepin on Sunday night. I slept like a log. Woke feeling as if I had been to a wild noisy party and was hungover but that rapidly improved.

I'm going home today. Not before time!

Admitted Friday and had copper late evening and into the night. Copper on Saturday finished later evening. Sunday they ran out of copper. Rest day. Monday waiting....waiting.....waiting. Copper finally turned up at 9 pm and ran until 1.30 am. However....when the nurse came to disconnect the copper when the pump alarmed it was found that all the copper had leaked onto the flood instead of into me! I wasn't aware because I slept through it all from the new tablet.

So, I'm having copper as i type but it's not due to finish until 2.30 and the ambulance is picking me up to take me home at 1pm. I'm not going to get the full dose. I will have spent 5 days in hospital for two and a half doses of copper.

The lady next door is still screaming and when I went to have a shower this morning I discovered the hospital hasn't got any hot water. The nurses aren't very happy about that. All those elderly people that they have to try to bathe and heating water in the microwave.

My doctor asked me if I want to come back next week for more copper to make up for this weeks fiasco. I won't repeat my response.

On a positive note, I'm feeling pretty good.

[Cheryl C]

I love your cheerful spirit in spite of the vicissitudes of your condition and your treatment, Chirley. Hang in there girl!

[Chirley]

I got a really big fright this morning. When I woke up I couldn't move my arms or legs. Everything was in spasm including my chest, back and abdo muscles. I didn't know what to do. In fact I couldn't do anything except lie there and panic. I even had trouble breathing because my chest muscles were so tight.

After a long time (probably wasn't, but certainly felt like it), my muscles stopped spasming and I got up and immediately took a rather large dose of Valium to stop the spasms returning.

I rang my local pharmacy and asked about the Doxepin. At first they said it wouldn't have caused the problem but then the pharmacist found an article which stated that Doxepin can increase the severity of existing movement disorders. I was advised to call my physician and when I spoke to him he told me not to take the Doxepin again and to take some Valium (didn't tell him I already did).

So, no Doxepin for me. (Seinfeld....no soup for you).

I have an old work acquaintance (boasts he taught me everything I know, he's so modest) who is now a Professor of Neurology specialising in DBS and movement disorders. I tried to make an appointment to see him but the next available appointment is almost a year away.

I feel very blessed that what I experienced this morning turned out to be temporary. I'm very frightened of being stuck in a body that I can't control and not be able to communicate. Sometimes I wish I liked alcohol.

[Neil Cuadra]

Chirley,

You really scared me with that story. Just hearing that you woke up unable to move made me think of locked-in syndrome (http://www.ncbi.nlm.nih.gov/pubmed/16186044). I know these were spasms, not a brain injury, so it's nothing like that, but it sounds just as scary.

I hope your "modest acquaintance" can shed light on it.

[Chirley]

Actually Neil, I've had this before in hospital and they called the ICU people to me.

It's just like that locked in syndrome that you linked to. I didn't try to talk this morning because I was by myself but in hospital I couldn't talk or even focus my eyes properly. They kept saying I was "non verbal".

I was told it was a brain lesion caused by cooper deficiency but my neuro care has been so poor as to be non existent and I've never had any investigations done to find the exact cause.

Part of the reason I've been feeling so down is that I'm made to feel that my condition isn't fixable so they may as well not do anything. I feel completely expendable. The only doctor who wants to help is the physician and he is working at the limits of his knowledge. The psychiatrist I saw said that after reading my charts he wouldn't blame me for being angry about my medical care because in his opinion it has been very poor. The thing is, I'm not angry just tired and depressed.

I have my fingers crossed that I don't have another episode of being stuck with my legs and arms in contracted positions. It was very frightening and painful.

If it happens again I think I'll have to move to an assisted care facility which means losing my beloved pets.

I just wish I could get some decent neurology input.

[Birgitta-A]

Hi Chirley,
How terrible with the muscle spasm! My late husband always said that the doctors are "chasing the evil around the body". He hated all drugs due to the adverse effects.
Kind regards
Birgitta-A

[Chirley]

I have a chest infection, and I'm happy.

My white cells are high enough for it not to be a concern. (I hope)

This is the first infection test I have had for a long time and I'm okay!

:D

[Chirley]

I saw the GP today (well it's 4.26am, so really yesterday). My Hb is 96! (fingerprick) It was higher before my hospitalisation and copper infusions. I'm a bit confused about what's going on.

Maybe this viral infection has lowered my counts. If my bone marrow dysfunction is caused by copper deficiency why would my counts drop after being given copper even if I have an infection?

Sometimes it's all too much to understand.

I'll just have to go with the flow and wait for my the official blood results with the WCC etc. noticed he added an ESR this time. Maybe he thinks the infection is a problem....who knows?

I'm so tired and have lost 3 kgs this week. I'm glad to be losing weight but I'm not trying and that's a bit concerning.

[Birgitta-A]

Hi Chirley,
You know I think all kinds of infections can decrease counts - remember that your bone marrow "is weak" after all these years with hardly any copper at all.

Hope you manage to fight the chest infection!
Kind regards
Birgitta-A

[Marlene]

I too feel that fevers/illness can burn through red cells. Finger pricks are not as accurate so hopefully you'll get your cbc result soon.

[curlygirl]

When my son was burning through red blood cells during his virus in the hospital I mentioned it and his doctor said that it actually happens to most healthy people, too. Just that when you go from a HgB of 14 to 11 and get better in a week you don't feel it but that when you go from 8 to 6 overnight you do. Hopefully you'll feel better soon and your counts will improve!

[Chirley]

Thanks everyone.

The thing is my cold/chest infection is completely gone. I came through it with flying colours. Just feeling tired.

I think I'm just letting this whole thing get to me. Just when you think you are on the right track and treatment is going along nicely and the bone marrow is behaving.....this happens. It's probably just a tiny little glitch and in all probability the fingerprick test was totally wrong but it does make you do a double take.

There will always be that little niggling doubt waiting to come to the surface when the tiniest thing out of the ordinary happens.

Come to think of it.....in the last couple of months, I've had three bouts of gastro, a urinary tract infection, a chest infection, a cold, a fever of unknown origin and a throat infection. All of which I've recovered from pretty fast and only needed antibiotics for the urinary tract infection and fever of unknown origin.

No wonder I'm a bit tired!

[Chirley]

I just got the phone call from my GP. Yes, still anaemic BUT my WCC is in normal range and so are my neutrophils! Lymphocytes low again but they've been low all my life except the one scary glitch a few weeks ago when they were high.

I realise the WCC is probably just responding to the cold/chest infection (which has come back) but that is a great sign that my bone marrow can respond normally when it needs to.

[Cheryl C]

Yes - no wonder you are feeling tired! You've been through the mill lately haven't you. It must be amazing to see a normal result for your white cells Chirley. That's great news - especially if you are having steroids. I understood steroids drop the white cell count, or is that wrong? When I got very ill with bacterial bronchitis over in Italy in 2011 the doctor there warned me that the steroid injection and follow up tablets she prescribed would drop my white cells further.

Next week I'll be seeing the specialist down here in Tassie where I am at present and will find out if my copper levels are normal, so that will be interesting.

[Chirley]

I don't really know what steroids do to white cells long term. I know that they raise the neutrophils in the short term because they are released early from the bone marrow and vascular walls in response. It's called margination.

I'm not on steroids all the time any more just when I'm in hospital so the sensitivity to copper is reduced.

I've done well with this cold and chest infection. One of my friends has it and she's on antibiotics and has been off work for almost two weeks. My mother has it and is on antibiotics (and whining and moaning). The next door neighbour has it and he's been home all last week off work. The GPs secretary said that it's rampant and there are a lot of cases of "man flu" coming through their doors.

Where in Tasmania are you? I did a trip around a couple of years ago. Lovely place but those mountain roads are bit tricky for my liking. Seeing all those crosses showing where people have died in crashes or going over the edge.....not for me! I'm not a trusting person and being driven by someone else who seemed a little reckless at times was just plain horrifying. I considered buying a holiday home in Triabunna (not so mountainous) but decided I didn't want to do the flight all the time given my mobility problems.