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CLL Life

by Anonymous

06 August 2011 at 21:40


Looking at how I think about having CLL these days I seem to be thinking differently? I appear no longer concerned about the procedure of giving a little blood for routine testing, I even never seem to give a second thought about what the disease may be doing. Whether my counts may have altered dramatically from the last time. I know it's  slowly marching (creeping up), but don't seem to be phased. The day to day symptoms that were new are now just a part of me, having adjusted my routine I seem to have forgotten what things were like before , so now feel normal again.  Is this normal, or am I in a form of denial again?
It's not a lot different to how things proceeded following my stroke. It took a while to walk again and compensate for semi  permanent vertigo. Even now two years on that's still there, but I don't notice, unless I turn a corner too fast  and  lose visual compensation for a while, then I over rotate. But it's normal I can't remember what it was like before. I don't notice. I remember when my daily prophylactic drug list was issued, " how the hell am I going to discipline myself to take all these morning and night" For ever? I just do, don't notice them, simple routines like lining the stomach and refilling the prescription, just seem to happen.
I guess we adjust and become the "new normal". The altered expectations of the future, the being unwell, the new routine, the precautions, the medical environment and the necessary new knowledge are all assimilated. Incorporated and connected and become nothing more than part of your normal day.
I seem to  notice changes but they don't stand out, it's understood and expected. So as infection has become more frequent and harder to shake, and  I realise that has crept up on me  too. Am I imagining how normal it feels?, Because I'm  sure something, that before would have seemed major, now is just another day and barely noticed, is this  normal, or does this happen to us all? I remember when diagnosed, finding out about infection precaution and again thinking " how the hell am I going to discipline myself to take this on board"? Well I did and it must help with some, but not all. Now I am familiar with many more antibiotics than before. I think this is why my interest has been peaked by much of the new research into combating pathogens, the search for a universal flu vaccine and even immunotherapy for CLL.
Only last week I was uplifted by the research at  Cardiff University into searching honey for phyto-chemicals to combat drug resistant pathogens. With a major spin off of perhaps finding a plant that may help combat the verroa mite, that is reducing this very resource.
Superbug Breakthrough: Manuka Honey May Help Develop New Superbug Drugs ,.
This week my head has been raised by much around immunology and pathogens.
The first antibody which can fight all types of the influenza A virus has been discovered, researchers claim. They isolated an antibody - called FI6 - which targeted a protein found on the surface of all influenza A viruses called haemagglutinin. When mice were given FI6, the antibody was "fully protective" against a later lethal doses of H1N1 virus. It should be understood this is not a vaccine and if it was possible to make a vaccine it is years away...

Source BBC: from the study published in Science Express -
There is work happening with T-cells, immunotherapy, and CLL...
Dr. Gribben at Barts--
Kipps, Castros et al have been working on a number of CLL vaccines like ISF35 etc...
 Some not so encouraging news;  Salmonella strain, known as S. Kentucky, has developed resistance to the antibiotic Ciprofloxacin, often used for treating severe Salmonella cases.

UK- NHS on the subject -
The NHS on the subject proved a much better read.

It appears that less than half of half a percent of all reported cases in these countries was the drug resistant strain of salmonella. And though there seems to be a trend towards  increase the incidence is still extremely  small.

The region of origin seems to be north Africa and the Middle east. trafficked by travel, poultry and some fruit and veg. Over use of antibiotics in poultry farming in that region is suspected as the reason for it's development.

As we CLLers already employ preventative hygiene procedures around food and especially raw fruit and vegetables, that the NHS suggest. I would suspect that we are best prepared to avoid such a minuscule chance.  However the trend does show a small increase.

It does make you realise the ability for many pathogens to select for drug resistance. Part of what interested me about cardiff's research project into finding phyto-chemicals to combat infection, and that  Manuka honey was not likely to select for honey resistant bacteria. There may be some mileage in the project, we have known of honey's antisceptic properties for centiries, perhaps many of the old wives tales hold a lot of truth?
There seems to be much going on in the field of research that may produce results that improve our quality of life (we could do with some that is purely aimed at improving QoL), Understanding how much we are able to absorb often makes me wish for discoveries that may assist in true management of this disease rather than wishing for a cure. You never know!!
None of it's gone away, the discomforts are all still here. As is the hammer over my head with knowledge that treatment will come. Maybe I'm just having a good day or maby we do just adjust
Take care

Tagged with: CLL

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