candidiasis

[Chirley]

Hi,

I had a gastroscopy/colonoscopy today. I have this every 2 years because of Barretts esophagus and past history of colon polyps.

Today, the gastroenterologist told me that I have gastritis (I have had this every time), antral erosions but normal duodenum. I also had 3 more polyps removed.

The one thing that concerns me, is that he found esophageal candidiasis. I have googled this and I see where it's a sign of being immunocompromised. I know I always have a low total white cell count but the neutrophil count is usually only a little low. It's the lymphocytes that are always very low and at the moment they are only 0.3

My doctor (hematologist/physician) never pays any attention to the low count. I have never had lymphocyte subsets taken. I'm also getting a lot of skin lesions that take months to heal. I'm now wondering if this is also a sign of candidiasis. I also read where the condition can be systemic if there is a central line insitu. I have a portocath.

Has anyone else had this? How would I know if it was systemic? Is there any treatment to increase lymphocyte counts?

I have not been offered any treatment for the esophageal candidiasis, I was told to see my GP to be prescribed treatment. This seems inappropriate to me. I feel he should have prescribed treatment while I was in his office. I have also developed a very low vitamin B12 and active B12 level. I also asked about this and was told that he didn't know why I have it and dismissed me. I was told (by my GP) that I needed to have B12 injections weekly for a while and then monthly after that. These haven't been mentioned again. I haven't had any injections and my anaemia is getting worse. I now have monthly transfusions instead of every 5 weeks. I think it's not because the bone marrow is getting worse but because my B12 is low and causing anaemia as well.

I feel like no one is listening to me. I have a reputation among the nurses as being pleasant and compliant and I try hard not to complain, but to remain as upbeat as I can, but I'm starting to get quite angry. Not at the nurses or any of the doctors in particular but at the system as a whole. No one seems to communicate with each other and they all seem to assume that some one else is dealing with any problems.

I have to have another transfusion on Friday and I told the unit secretary that when I'm admitted this time, that I insist on seeing the doctor for a consultation to discuss my blood test results, treatment and prognosis. Even though I have demanded this, I'm almost certain it won't happen.



Maybe I'm clutching at straws but, I'm wondering if I get treated for systemic (or even just esophageal) candidiasis, and B12 deficiency anaemia, that I might start feeling a little better.

Tomorrow, I'll feel embarrassed about writing this whinge, but today, I feel like I need to.

Thanks.

Chirley

[Birgitta-A]

Hi Chirley,
Too bad with the candidiasis – I think you are right when you think it should be treated. Do remember to avoid sweet food! Here are the latest guidelines. You should look at XIV page 22: http://www.journals.uchicago.edu/doi...57?cookieSet=1

“Recommendations: oropharyngeal candidiasis
For mild disease, clotrimazole (Mycelex) troches at a dosage of 10 mg 5 times daily, nystatin suspension at a concentration of 100,000 U/mL and a dosage of 4–6 mL 4 times daily, or 1–2 nystatin pastilles (200,000 U each) administered 4 times daily for 7–14 days is recommended (B-II).”

About Mycelex: http://www.rxlist.com/mycelex-drug.htm. I can’t find anything about haematological adverse reactions.

I don’t know anything about how to increase lymphocyte counts.

Of cause you need B12 injections! I can’t understand why you don’t get this kind of treatment as soon as the deficiency is diagnosed .
Hope you manage to get the treatment you need!
Kind regards
Birgitta-A

[Marlene]

I can't believe they are not treating for both either. Candida allows the not so good bacteria to flourish. That bacteria will eat up the B12 leaving none for you.

In the meantime, if I was in your shoes, I would do the following until they get their act together:
Oral methlycolbalmine (B12, the methyl form) will help. Jarrow makes a 5000mcg methly form. This form does not need to be converted to a usable form and there's a high enough dose for gut to absorb what it needs. Take it on an empty stomach for the best results.

For the candida, eliminate all sugars (natural and artificial) and white breads,pastas and rice. Also eliminate all fermented products and mushrooms and anything with yeast in it. You pretty much go on a whole fresh food diet. Nothing processed, not wine, beer, soy sauce, mustard, etc. Add in a good probiotic to re-establish good bacteria that will keep the bad in check. Again, Jarrow makes a pretty good probiotic. I usually order many of my supplements from www.iherb.com

This is just my two cents but if you google B12 deficiency and candida, you'll find tons of info on how to deal with both naturally. I'm sorry that you have to deal with this and that your docs are not more supportive.

Marlene

[Neil Cuadra]

Originally Posted by Birgitta-A

Here are the latest guidelines. You should look at XIV page 22: http://www.journals.uchicago.edu/doi...57?cookieSet=1

To get this PDF file I had to use this URL instead.

[helen c.]

i would be looking for a new doctor
i would find the best doctor that specialises in anemia in your area one that will talk to you. there are great doctors and then some are not. reasearch all you can on the internet hope you get some answers

[Chirley]

Thanks for the answers.

I have just come home from the hospital. I have spoken to the new haematologist and I'm feeling a lot more confident.

He says I don't have MDS!!. I have some bone marrow failure of unknown cause, but I do have malabsorption problems. I have non existent iron levels despite blood transfusions every 5 (now 4) weeks for the last 2-3 years. I also have next to no B12.

I have started on weekly B12 injections (today) and now have to take B6 and folic acid every day as well. I have also been started on a PPI to try and reduce diffuse inflammation in the gastro intestinal tract. (found on biopsy). As I get Steven Johnsons syndrome from iron, I still haven't got a way of replacing that yet. However, he has done some research, and thinks he has found a form of parental iron that I haven't had yet. He has asked me to go home and think about being admitted to ICU and trying this new form of iron. He says there is a possibility that I could have an anaphylactic reaction, but if I'm already in ICU , then I should be alright.

He is a little concerned that I have developed candida of the oesophagus because it indicates that my low lymphocyte count is becoming a problem. He hasn't offered any explanation for the white cell problem or any treatment for it either. He has started me on fluconazole.

The part that I liked, was that he gave me choices. If I don't want to try the iron infusion, then I can continue to do what we are doing now, or I can be admitted to day care every week for 1 to 2 units of blood, which can be run faster and I won't have to spend 2 days and a night in hospital every month.

I'm hoping that by treating my B12 deficiency,it will slow the rate that my anaemia progresses and I won't need to be transfused for the iron part of the anaemia. (or at least, not as often).

He also reassured me that the kidney failure I developed, is as a result of low perfusion and that if we don't allow my Hb to drop very far or my blood pressure to drop as far (sometimes as low as 70/30) then it should repair itself.

I have to go back and see him in 4 days time and he wants an answer to the ICU/iron infusion question by then. He says that I would need to do this when my Hb is still high from the transfusion. I feel that I'm not being given a lot of time to think about it, but maybe that's a good thing.

I also have to have a pill cam to investigate the high gastrin level and he thinks I might need to have some kind of angiogram as well, but I felt a bit overwhelmed by this part of the conversation and started tuning out. I'll have to ask him about this next time I see him. This poor old, B12 deficient brain couldn't take it all in.

I'm very tired, I can NEVER sleep in hospital, specially when they do obs every 15 or 30 minutes. So, it's a lovely cool shower and off to my own, comfortable, queen size bed with my own soft comfortable pillow. Bliss.

Bye

Chirley

[Neil Cuadra]

It's so good to hear that you have confidence in this doctor, Chirley. And that you get to have some good rest at home.

Pillcams are a great invention. Here is an explanation of how one works. That may not be the model they'll use for you, but the idea is the same: swallow a pill that passes through your system harmlessly, and the doctors get a series of photos taken by a tiny camera in the pill.

[Birgitta-A]

Hi Chirley,
Very good that you at last got a new dr !

Hope you will improve with fluconazole, B12, folic acid, B6 and some kind of iron that you can tolerate !
Kind regards
Birgitta-A

[Chirley]

Thanks,

I finally feel like I'm being listened to. The new haematologist even came in to see me on a Saturday, on his day off!!

He's really easy to talk to and I asked the nursing staff and other patients about him. He is a young doctor from Pakistan (educated in Australia and England) he has gained a reputation for having excellent results for his transplant patients. The nursing staff say that while he is very up to date with new treatments, he is also a little conservative. He is also very popular because he has a cheeky sense of humour, he is also a little bit vain about how he dresses and how he styles his hair, he is also self deprecating. He said that if he thinks I'm not doing what he asks me to do then, he's very good at nagging.

I don't know what's happening to my country at the moment. Those terrible fires to the south of me have finally calmed down a little. So far they have found over 200 bodies with lots of people still missing. But just when we thought the floods and devastation to the north were over, we now have a category 5 cyclone that is causing more flooding. The cyclone is coming south and it looks like it is going to cause some problems here, where I live. I just heard a report on the TV telling us that we should rap ourselves in a blanket and cover ourselves with a mattress. (along with a lot of other advice). I think, that if I tried to cover myself with my mattress, I'd probably be squashed. If the cyclone does come here, I'll create a little nest under my bed with all the emergency supplies that I'll need and hope for the best.

I feel very optimistic and positive for the future for the first time in a long time. SO....I'm going to do what women were meant to do....go shopping for a new handbag.

Bye

Chirley

[Marlene]

So glad to hear about your new doctor...sounds like you're feeling better already just knowing someone understands your situation. Now you just need to survive the weather!

Marlene

[mannythedog]

First, let say how glad I was to hear you don't have MDS. Second, fires and tornado's, hope you don't live in a Mobile home. They are magnets for those types of things here in the U.S.

I check up on you all every so often, and I see you have the candidacies. Pop had Candida albicans and went through 15 days {15 treatments} of intravenous meds. {see pop's story just before he passed} It never really worked for him due to his condition; however, if you would like me to contact his doctor, or the girls at the hospital to find out what meds he was taking, I will for you.

I am so glad your not MDS. It seems that the doctor is really interested in you. Oh, and go Red. For some reason, Angie needs a red purse to feel better when she is down, or when she wants to feel "special".

Always thinking about you, all of you.

Scott
Son Of Bob