Lymphopenia - questions about infections, testoste

[hlh]

Hi everyone,

I haven't posted in awhile. No news is good news, I guess!

My father is 70 year old with lymphopenia and idiopathic antibody deficiency. He has been stable for awhile with CD4 counts in the 300's, and actually made some antibodies to his last pneumonia shot (Prevnar) last year. No IVIg yet, as infections haven't been frequent, and no prophylactic antibiotics yet.

He currently has been getting about one upper respiratory infection a year, which is pretty good in my book. But he has many other medical problems (including a spinal cord injury, severe lung disease and others..) and crashes quickly when he gets an infection. It can be scary.

Last week he suddenly became sick over a few hours. Awoke tired and was slow to get going... then complained of weakness/achey/headache as we were going to medical appointment (test)... and by the time we got there he could barely walk and I had to use a wheelchair to get him back to the car. I took him right to his primary care doctor afterwards. He drew his blood to check his CD4 count, and told us to start antibiotics as soon as we got home. Amazingly he started feeling better as I got him drinking drinking drinking and took a nap. Next day, back to normal. I actually "forgot" about the pending CD4 count...

His doctor mailed us his lab tests and we got them yesterday. CD4 count dropped to 80. This is his lowest ever. We called his immunologist and will be seen today to repeat tests and decide on plan. My father is very worried, but fortunately feels ok now.

As we are probably starting to hit a phase in my Dad's illness where he becomes less stable, wondering if you guys can give us some more "pointers" on how to stay as healthy as we can.

Other then washing your hands a lot, trying to encourage people who are sick to not visit.... any other words of wisdom?

Also, have any of you had a brief episode that seemed like an infection and then quickly resolved?

It is so hard for me sometimes to know when to start antibiotics and when to hold off and wait.... He can get sick SO fast, and it is so hard to reach his doctors and to get in to see them once he gets sick. Just curious what you guys do. We keep antibiotics at home just in case. His doctors trust us.

And finally, do any of you guys use testosterone?

My father started it about 10 years ago for the usual reasons and had very low blood levels. His primary card doc started it. He noticed that the testosterone also seems to stimulate his bone marrow a little, and has helped his lymphocyte counts a little and his chronic anemia improved as well. HOWEVER, he has recently started overdosing and has sky high levels.... it is a real problem, which is doctors have conflicting opinions about and are not monitoring closely enough. It is even scarier now that he has seen his lymphocyte counts drop... I am worried he will overdose more. The testosterone makes him VERY difficult to deal with, as he becomes more abrasive/irritable and already is like this at baseline. Nevermind the increased risks of heart attack etc.. Ugh. Anyway, I know his doctors should be on top of this, but it is a real problem.

Sorry for the long rambling post.... Thanks.

[hlh]

Nothing?

[john]

Hiya,
Sorry not to have replied sooner, I was away from the internet for 10 days ( how bad is that?? ), and I just got home yesterday.
You have asked a lot of questions that I am not qualified to answer, but I'll do my best on the stuff I can!!
I figure that it's always worth taking antibiotics if I feel something is about to happen to me, because the quicker I hit most infections the less seriously they develop and are easier on me!! I always take the whole course though, it really is not a good thing to allow resistance to these invaluable medicines to develop.... you never know when you're gonna need it again!!
I am not paranoid about trying to avoid infection, but take sensible precautions when I can, like I try to keep out of reach of folk who are obviously infectious, and also I try to minimise hand to face contact, even though i wash my hands as often as I can, and I try to remember not to touch surfaces that other people touch (like toilet handles, stair hand rails, public transport hand rails etc.).
Testosterone supplements I have not experienced, but I do know that they increase aggression, and unless the docs said that having it was absolutely necessary then I would be reluctant to take it myself.
Try not to let your Dad's problems get you down. Easier said than done I know, but you have a life too.
Speak soon.....

[hlh]

Hi John,

Thank you very much for your input. It is good to hear about your basic approach to infections etc..

Yes, there are some downsides to testosterone. My father refuses to believe that it affects his behavior/mood/irritability, but I guarantee you that his family notices it does! Honestly, it wasn't really a problem when he was taking appropriate doses, but now that he overdoses we certainly see the problem. Amazingly, it has helped his counts a little in the past, but doesn't seem to help as much anymore.

Thanks again for your support and good thoughts John.

[mali42]

Hi
Its different for all of us but my experience is I mostly know when an infection is coming and when to take antibiotics but now and again like the last few days i am unsure because something is happening with fatigued plus I'm not my happy self but i get to know when to hold off on the antibiotics and usually have been right, I have antibiotics at home so when I get an infection I take a double dose the first day so it can hit the infection before it takes a hold.

I think with your dads age and lung disease it would be a good idea to start the anties as soon as possible if you suspect an infection to stop more damage to his lungs but i would discuss this with your medical team first.

I hope this is helpful

Malcolm

[hlh]

Hi Malcolm,

Thank you so much for your post. It is really helpful to hear your perspective, and reassuring.

I am glad that we usually have antibiotics at home, and so far the doctors have been pretty good about trusting us. But my father can feel unwell for many reasons because of his other medical issues, so sometimes it is a struggle to know when to treat for an infection. The last time we even saw his doctor in the early stages of an infection and the doc wasn't concerned. But of course it got worse (and always on a weekend)..... So we often wind up waiting a bit too long before deciding to treat him for an infection because they say to wait for a high enough fever etc... By the time he has a high fever, he is confused/weak/can't walk and is a total mess.

Thanks for letting me vent...

Interesting that you take a double dose of antibiotics on the first day... did your doctor tell you to do that? Maybe I should ask about it...

Thanks for your help.

Heather

[mali42]

Hi Heather

Yes i was told to hit the infection hard and fast with a double dose so it does not get a strong hold because it takes longer to get rid of it and of course all the after effects. it would be a good idea to mention this to his doctor or maybe if you can phone or e-mail him also if he does not sound concerned remind him of last time and how your dad ended up.

Have a chat with your dad if you can and ask if he knows when an infection is coming on, that is if he will talk to you about this, I have to read between the lines where my mums health is concerned.
I always tried to get my now grown up children to talk to me about how there diabetes affects them but always got a better insight from other diabetics.

Malcolm