"Know when it's time to fire your doctor"

Thanks for the laughs - I think you are my husband, lordy I know he can't watch the news and also hear that I've called him for dinner [that's juggling more than one thing isn't it].

I'm trying to remember what your blood work results were that brought you the CVID diagnosis. As I mentioned, I have low IgG but numbers aren't low enough to treat yet.

You are handling things just right for you Ghost and that is the main thing!

Do let us know what your hematologist says when you see her soon!

Well its a bit of a strange one my CVID.

I have never really suffered from illness. From birth all the way up to the age of 32 (now 34) other the odd cold and a couple of childhood illness, chicknepox, sore throat, tummy ache, stuff you get when your first start going to school + shingles as a teenager, I very rarely got ill.

I went from the age of 17 to 32 without ever needing my ITP treated either.

Anyway I came down with a bad cough a couple of years ago and my doctors refuse to except it was anything other then a virus. 6 months later, too many visits to mention, I lost a lot of weight due to my coughing being so bad because I couldn't keep food down, kept bringing up lots of acid reflux etc they relented and did a sputum test and found I had a LTRI. So god knows how long I had that in my system. A few months after my platelets crashed to 3.

During all the blood work my Hemo noticed that my Immunoglobulins levels were low so she referred me. Immunologist said that I was border line CVID so they would keep an eye on me. So I go for 6 monthly check ups. Each check apparently was fine until my last one about 3 months ago.

Its now about 2 1/2 years since they diagnosed me and they are now saying that I should be having prophylaxis antibiotics. I actually have no idea what my numbers are. I know they are taken when they test my platelets so I am going to ask my Hemo.

GhostRider wrote: My immunologist mention some kind of prophylaxis antibiotics. She also mentioned that I would need a ECG before I could take it. She then mentioned that they can give me something not very nice side effects like diarrhoea.

First antibiotic I took gave me the runs so I stopped taking it. I've now got a different one which is fine. I've never had an ECG, I wonder if I should have done.

I was told that the antibiotic is not meant to stop us from getting infections but that if we do get them, they don't take off too quickly before we can get treatment. The danger seems to be that we get an infection which quickly takes over the body. I find that scary which is why I take the antibiotics.

I tend to use doctors as an information source. Learn all I can, get their advice and then choose what to do for myself. If a doctor wouldn't go along with that idea then I would find someone else. But I do understand that is not easy if you live somewhere with little choice. If you want to find another immunologist your GP can refer you to whoever you like.

Another thing my immunologist arranged was penicillin allergy testing. I have had a reaction in the past but on being tested, and it took all day to do, I was declared not allergic any more, so that is another antibiotic I can take if ever needed. Well worth the bother of doing for anyone who thinks they are allergic to penicillin and has an immune deficiency.

Ann what is the testing for penicillin allergy? I'm allergic to it but my allergy is fairly new so I can't have it - and believe me with the serum sickness I had from it I don't ever care to have it again!

Interesting history Ghost - so you have had borderline CVID for a while and until 3 months ago it wasn't that bad. I have too many antibiotic allergies so I sure hope mine continues to be deemed no need to treat!

Melinda wrote: Interesting history Ghost - so you have had borderline CVID for a while and until 3 months ago it wasn't that bad.

Apparently So lol

Melinda wrote: Ann what is the testing for penicillin allergy? I'm allergic to it but my allergy is fairly new so I can't have it - and believe me with the serum sickness I had from it I don't ever care to have it again!

The allergy testing was done by injecting tiny bits of different diluted penicillins under the skin on the forearm, along with controls of water and an antihistamine. So about six skin injections in a line. The antihistamine itched like anything but we weren't allowed to scratch! Then an hour later doing it again with less diluted samples, and so on each hour until it was at full strength. Then if no reaction, giving diluted amoxycillin by mouth, and repeating each hour with less diluted stuff. I don't remember how many times they did it all but it went on all day. I wasn't alone thank goodness as three of us were being tested at the same time.

The doctor doing it said that he'd done loads and very, very rarely does anyone show an allergy.

Thanks Ann! To me that is scary since it was amoxicillin that caused my serum sickness. Will have to give this some thought as to whether I should ask to be tested.

Ghost, you are "special'

Can you guys imagine having CVID without your spleen? You all seem to have been diagnosed with it after ITP. You just never know what can happen in life. Good decisions to keep it for sure!

Melinda, serum sickness may well be different. Most merely have a rash and it seems that the allergy wears off after time, or wasn't really an allergic reaction at all.

And no Sandi, having no spleen doesn't bear thinking about. But I never was going to get rid of mine. It just seems such a barbaric method of treatment, on a par with trepanning and lobotomies.

I just lump serum sickness in with an allergy. It was HORRIBLE!!

I wasn't going to give up my spleen since no one would tell me 'yes, it will cure you'.

I developed my low IgG a long time after ITP diagnosis. There seem to keep being more of us with this doesn't there.

There probably are even more people with CVID here than we know. I'm sure there are many who have never been tested. I often wonder if my son has it. He gets sick with high fevers fairly often, virus-like illnesses. He's 25 though and won't go to the Dr. What can you do?!

It's funny, I've just visited my new gp today to touch base and I told him about the way my immunologist dismissed my question about things I could to improve my overall general health and immune system.

He said the same in that there is nothing I can about my Ig levels however there is a lot I can do to improve my general overall health which in turn will help if I do get an infection.

Staying fit, making sure I'm not over weight, eating well, making sure my vitamin levels are okay etc etc, it all adds up and every little bit helps, no matter how small.

He said great thing, those little things, well just one might make all the difference, you just never know.

That's the kind of doctor I like

I'm glad that you were happy with your GP visit and that she told you what you wanted to hear! I thought you were looking for more specific advice though, which is why I suggested the dietician. The things she told you are mostly common sense statements. Have you decided to make any lifestyle changes?

Just saw my hemo.. platelets are at 139 so now dropping the preds to 25mg and then to 10mg the week later and dropping the Promacta to 25mg for the next 2 weeks.

My Ig levels are pretty crappy but that's for another day.

As for lifestyle, I already walk about 25 miles a week, I intend on going swimming as well soon.

You are right that I need to see a dietician. I was hoping they my gp or Hemo could help in that regards but turns out it is not so. So I will be hunting down a dietician to help in regards to checking my vitamin levels and to see if I have any food intolerances..

Also open to any ideas here as well.

GhostRider wrote: Also open to any ideas here as well.

Ideas - here's one. I'd suggest that you do your own research as well. Most dieticians still follow the idea of the four basic food groups. I keep hearing that that thinking is outdated and there are better ways to eat healthy. Everyone has their theories, and you have to find the one that makes the most sense to you. Having vitamin levels checked is a great start though. Many people with ITP find that they are low in one area or another.

Great counts!