The other boss needs a hug please!

[john]

Hello everyone,
As one of the guys who usually doles out the welcomes, kind words and sometimes even good advice, I need to feel supported myself!!
The story goes like this.....
Just before Christmas my mouth started to give me problems...painful ulcers, bleeding gums and loads of tongue "fur".
This was very quickly followed by a feeling/sensation of my gullet being blocked, making it hard to swallow and hard to bring up wind.
Then I started to cough!
I did something I advise people NOT to do and googled "Oral Thrush", on a hunch and because I have heard people at my clinic talking about this. Sure enough the images google was showing me were a mirror of what I could see in my mouth, and the info stated that in severe cases it could spread into the oesophagus and cause problems such as blockages. My GP agreed with my diagnosis and gave me fluconazole for the thrush and Augmentin for the cough.
Result...the oral problems very quickly cleared and the coughing began to diminish. Sadly when the antibiotics were finished the cough has came back with a vengeance and now I'm taking Cipro for that. I feel wretched and run down and I'm on a big pity trip, which if you know me is just not me! Apparently thrush is not uncommon when your T-cells are depleted and mine are at rock bottom.
So come on guys, send me your cyber-hugs and wish me better....I don't "do" this feeling sick stuff at all well!!!!
From a very grumpy and unhappy John.

[marksmom]

Hi John,
I'm sorry to hear you're not well....trusting you are feeling better soon! Meanwhile, rest as much as you can. When feeling particularly wretched, try to remember how fortunate we are to live in this day and age of knowledge, Igg replacement, and antibiotics!

Best wishes,
Rachel
Mom to Mark,13, CVID

[irishgirl]

Massive hugs and hope you feel better soon xx

[floopyjim]

Hi John, if you get repeated attacks of thrush, I found eating lots of garlic and ginger helped (particularly jamaican ginger beer) - the garlic probably didn't help anyone else but it made me feel better! I also found Daktarin gel better than the fluconazole I was prescribed (it tastes better too!).

Hope you get better soon.

James.

[john]

Dear Rachel, Emma and James...thank you so much for your help and good wishes.
I'm still feeling low, but hey, the sun is shining and we're off to Devon tomorrow to help my Mum celebrate her 95th birthday, so things could indeed be worse!!
James, I love the thrush tip about ginger beer...I have never heard that before, but I do like the really fiery jamaican one so we're getting some in...I'll drink it prophylactically!!!
I did get some Daktarin before I saw my gp, and it does taste good and it did have an impact on my mouth thrush, but I needed the fluconazole tablets for my gullet, and so I took them for two weeks.
I am constantly in awe of you, my fellow patients, when it comes to support...once again, thanks.....

[jackiedal]

Hope you feel better soon! I was sick for about 10 days after Christmas. It does really get you down after a while. I think it is a great idea to post on this site when one is sick. The support from others like us is comforting. No one else knows what we are going through.

[john]

Thank you Jackie, I hope you're feeling better now. It's a strange thing, support from your peers when you're feeling ill, but it does work and it's good for all parties, both the helpers and the helped! Keep in touch, and remember whenever you feel the need, TELL US!!

[glowing]

Hi very grumpy and unhappy John. I'm so sorry you're still feeling low but hope your time away with your lovely wife, visiting your mum will cheer you. Along with wishing you better we wish your mum a very happy birthday. Big hugs to all of you.

Where would we be without our loved ones and our forum friends, to help us through these horrible times?

Glo

[carole2091]

Hi John

Sorry to hear you have oral thrush.  For the past 20 years I have suffered from chronic mucocutaneous candidiasis - a t-cell immunodeficiency which has given me constant oral thrush.  I take 400mg of Itraconazole for this daily which apparently is a massive dose as well as topical Nystan.  As my drugs were using their effectiveness I was referred to the Brownlee Centre at Gartnavel General Hospital in Glasgow and was advised to drink grapefruit juice with my Itraconazole to get more acid into my stomach.  They tried to source Amphotericin B pastilles for the thrush (they used to be given regularly to HIV/AIDS patients but due to the advances in HIV treatment they are no longer widely available).

I too have chest infections which seem to go hand in hand with the immunodeficiency, also type 2 diabetes - the only good thing about this is the insulin I now inject is improving the oral thrush and Addison's disease.

If your oral thrush persists would be happy to offer you some other advice on managing it.

[john]

Hi Carole, thanks for this advice...I need a strategy if the thrush comes back...I will be seeing my specialist nurse soon and talk this over with him. I'm sorry to hear you have this problem too...the word "thrush" gives no clue to how painful and nasty this infection is does it?
I'll let you know how things are going...now I just have to get rid of this hacking cough! What a life, eh?

[s162216]

Hi John, I hope the thrush starts to clear soon with the Fluconazole and the cough improves.

Sadly taking antibiotics makes anyone subject to the possibility of candida colonising the mouth etc when normal flora are displaced, but more especially those like us with weakened immune systems who can't rely on the body to naturally keep it under control.

Hope things get better soon,

Sam.

[gillie]

Hi john. I'm sorry about the thrush and hope you're feeling better by now. I'm just over a respiratory infection which was satisfactorily nailed by 7 days on Amoxyl. Are you and Sue planning on sailing past my Junction of M4 without calling in for a cuppa on your way back from Devon? Shame on you! I'd love to see you both. In the meantime, every good wish to your mother on her birthday.
Love,
Gillie.

[john]

Hi Gillie, the deed is done...we used the A303 both ways for our visit to Mum's, mainly due to weather and traffic forecasts!! Feeling a bit better myself, although full-on mother for three days didn't help!!! It's good you can still clear up an infection in a week, I'm finding mine harder to shift as time goes on. I have the joy of a morning of infusions today...we hope to get away next week for Sue's birthday...then we can relax with no more travelling for a couple of months!!! There were some good thrush tips here...when it works as designed this forum is marvellous!! Welcome back Gillie, you've been badly missed!!
John xx

[mcarstens]

Dear John,
Good that you have such a wonderful spirit and attitude. Going on 66 years of this PID now.
Finding it alot harder to manage at times. On Weekly SCIG. The fatigue can be challenging.
Since fungus infections have put me on disability 3 times, can let you in on a few tips that I use.
When I have a fungal infection I try to manage my pH not to get too acid, so I was surprised at the professionals
telling you to drink grapefruit juice. Then I decrease any foods that may have known fungus/yeast in them because
of cross reactions. Also decreasing or eliminating sugar or foods that are high in sugars are recommended.
When resolved, I take a maintenance dose of 400 mg. of fluconazole every month, and after dosing with antibiotics.
Thats it,
MCarstens

[john]

'Morning Mickie,
Thanks for all this info and the good wishes. We seem to share a lot of the same issues....I wonder if things do get a little worse after long-term replacement therapy...I'm into my 23rd year of it now, and a lot of side issues regularly arise that I didn't have early on.
Looking positively at it though, just not to get those crippling infections of the chest and sinus is a massive benefit, and who's to say that all the other stuff we attribute to the treatment wouldn't have come along anyway...we none of us are getting any younger!!!
I'm at the clinic on Thursday and will have a chat with the medics about my thrush....so far it hasn't come back (touch wood!), but I don't want to go there again if I absolutely don't have to!!
I do hope the terrible weather and snowstorms are not affecting you too badly up there in Buffalo...it all looks so cataclysmic on the TV here in the UK!
Keep warm and well - John