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AA Aplastic anemia

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  #1  
Old Sat May 19, 2012, 09:02 PM
flyguy flyguy is offline
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Immunity problems in spite of WBC of 4.0

I was diagnosed with MAA 3 years ago and had ATG and IST following ATG. Both treatments had no effect on my critical CBC reports and I haven't been on any treatment for over a year. Fortunately most blood numbers are much better now. WBC 4.0 RBC 4.0, Platelets 65, and HG 12.2. In spite of this improvement my primary physician and I have noticed that I seem to be getting more infections of longer duration in the last 6 months, at the same time my WBC has climbed from 3.5 to 4.0. He has ordered a immunoglobulin sbuclass test to be added to my CBC when I see my hematologist next week. Along the same line, I haven't felt any boost in energy as my HG has risen from 9 to 12.
Has anyone else had increasing problems with immunity after "recovery"?
I had WBC numbers in the 2's for 2 years and almost never caught colds or had infections and now I'm getting everything coming along. Any ideas or experiences from others?
Thanks,
Flyguy
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Old Sun May 20, 2012, 10:41 AM
Marlene Marlene is offline
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I know when John's WBC/ANC was low and early on in his recovery, we were obsessive about infection prevention. In his first two years out from treatment, he only got sick twice. And that with an ANC of .8 - 1.5. As he got better, he started getting exposed to more stuff and we were much more relaxed about things. Consequently, he is getting more colds than before.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Sun May 20, 2012, 06:52 PM
Karenish Karenish is offline
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for years and years i have never ever been ill - even when i was diagnosed with SAA I was not ill as such and hadn't had so much as a cold for years...now just over a year after diagnosis and treatment with alg rabbit, i have had one sinus infection which cleared up quicker than my colleagues at work, my whites are not at full strength yet.
I put this down to the fact that for all these years I have been a clinician and religiously use hand sanitizer every hour or so, and when i have toileted, touch doors etc etc. My consultant said that the majority of bugs are transfered via hand to eyes..... just watch someone and see how many times they do touch their eyes in a day after handling money, door handles, each other etc. Of course it can't be proven 100% but I am convinced that adding this extra precaution helps with not picking up infections. good luck all and as ford prefect says in brave new world.....be well! xx (well i think that is who said it)
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Old Mon May 21, 2012, 05:58 PM
flyguy flyguy is offline
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Quote:
Originally Posted by Karenish View Post
for years and years i have never ever been ill - even when i was diagnosed with SAA I was not ill as such and hadn't had so much as a cold for years...now just over a year after diagnosis and treatment with alg rabbit, i have had one sinus infection which cleared up quicker than my colleagues at work, my whites are not at full strength yet.
I put this down to the fact that for all these years I have been a clinician and religiously use hand sanitizer every hour or so, and when i have toileted, touch doors etc etc. My consultant said that the majority of bugs are transfered via hand to eyes..... just watch someone and see how many times they do touch their eyes in a day after handling money, door handles, each other etc. Of course it can't be proven 100% but I am convinced that adding this extra precaution helps with not picking up infections. good luck all and as ford prefect says in brave new world.....be well! xx (well i think that is who said it)
Hi Marlene and Karenish,
Thanks for the suggestions and comments. I'm sure I'm not as infection-aware as I was when I was much sicker and taking IST, so I will try to resume better habits. Karenish, I think you are right about the number of times we put hands to eyes. Handkerchiefs are inherently unsanitary too, but probably protect others better than ourselves. I still don't understand why the number and length of infections has increased drasticly, but it may be a bad season for respiratory problems here. I see the oncologist for 6 month follow up this week and will see if he thinks it's something worthy of following up on. Best of health to both of you
Flyguy AKA Ron
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  #5  
Old Tue May 22, 2012, 07:56 AM
Marlene Marlene is offline
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You may want to have your vitamin D levels checked. Another thing to consider is making sure you have a good balance of good bacteria in your gut. A big piece of our immunity is in our gut. When that is out of balance, it throws off your immune system.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Tue May 22, 2012, 03:05 PM
flyguy flyguy is offline
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Originally Posted by Marlene View Post
You may want to have your vitamin D levels checked. Another thing to consider is making sure you have a good balance of good bacteria in your gut. A big piece of our immunity is in our gut. When that is out of balance, it throws off your immune system.
Hi Marlene,
Thanks for the suggestions. I had a stomach virus pryor to my latest sinus infection (of 3 weeks so far) and could certainly have tipped the balance of my immune system the wrong way. Also I take 1000 IU of Vitamine D daily but I think the current trend is toward megadosing. What do you take/recommend? Maybe I can get the hematologist to take a vitamine D level on Thursday. My wife is a nurse and stuffs my daily pill box with loads of vitamines but tends to shy away from going much above MDR levels.
Thanks,
Ron AKA flyguy

Last edited by flyguy : Tue May 22, 2012 at 03:29 PM. Reason: error
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  #7  
Old Tue May 22, 2012, 04:58 PM
Marlene Marlene is offline
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Yes your hematologist can request a serum vitamin D. For most of us, 1000 ius is not enough. You have to take into account the season and how much sun exposure you get. It is best to check it to see where you are at. In general, 1000 ius will raise your serum levels about 10 points. And it must be D3, not the D2.

John takes 5000 ius as do I. But it's best to get it checked. Optimal is around 45 -50. Last I checked, I was at 48 but John was in the 30's which is considered normal but not optimal. For the longest time, he did not get any sun. John also weighs a bit more than me so he should really be taking more. You can check out the vitamin D council here : http://www.vitamindcouncil.org/

Ask him to check you for H-Pylorie bacteria also. This is good to check for at least once. This is the bacteria that causes ulcers and it has been associated with blood disorders also. For the first test, they can draw blood and look for anti-bodies. If positive, and they treat, subsequent testing is done via a breath test because you will always have the anti-bodies in your blood. At least that's how I understand it. If I come across the study on this I'll post it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #8  
Old Tue May 22, 2012, 05:21 PM
Lbrown Lbrown is offline
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You should also ask for a 1,25D test - this is the active metabolite and supplementing without testing can push you into toxic levels.

Deb
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