CLL Support Association
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Feeling really unwell

Viral/infection symptoms have gotten worse so suddenly. My WBC count lymphocytes are rising but not exponentially and still well below what others have who are in treatment but I have picked up a really bad virus/infection - doctors don't seem to know and feel just terrible. Not sure how to get back on my feet again. They have told me to ring 111 tonight if my temperature goes any higher and want to see me before the weekend. Feeling really low which is unlike me.

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Hi TAS50, I sense you’re very concerned and feeling pretty rotten without the level of medical support that would alleviate the anxiety.

Have you any idea of the source of the infection or do you just feel generally and unspecifically ‘unwell’? Have you had any blood tests to look for infectious markers other than WBC and ALC? It doesn’t sound as if you’re yet on antibiotics.

My advice would be to monitor yourself and if you have any concerns or feel really unwell, then seek medical help. Watch for a temperature above 38 or consistently below 36. Do you have means to test your pulse? Certainly seek help if you have a consistently elevated pulse rate over 90 beats a minute. I’m mentioning this because being immunocompromised, we need to be watchful and aware of sepsis developing.

There’s an awful lot of bugs and viruses around at the moment so there’s every chance you’ve succumbed to one of them and rest, hydration and possibly antibiotics and paracetamol will sort it. But see your doctor before the weekend, be guided by your own instincts about how you feel and ring 111 if you’re concerned. Anxiety may be fuelling it and in reality not everything is CLL related. It’s true CLL can exacerbate illnesses but we still get the run of the mill illnesses.

Feel better soon,

Newdawn

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Thank you Newdawn. I was panicking but got through the night and see the doctor again this morning. She has taken more bloods so lets see if there is some underlying infection. TBH I had never heard of sepsis or known that I needed to keep a watch on my temperature and pulse (pulse by fitbit and today just racing again). Really good advice.

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Thanks all for your replies. Communities like this are worth their weight in gold. Now looking at my bloods and they vary so much in two days. is that normal? WBC still not high but one sheet (Tuesday) says 23.5 and then on Thursday 19.5. How can they vary so much. Still feel rubbish today so am going to call 111 as now my chest is hurting as well and so weak. I have no idea why the doctor did not give me antibiotics yesterday if my CRP is high (am finally learning to understand all the terms)!

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The Aussy flu is hitting the UK hard at present.

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Same in the US and I'm just amazed it's almost February and my compromised immune system is still keeping me from getting sick, but no "victory dance" yet, cause I know this flu season will probably linger till early summer!

Meanwhile trying to help things by doing a lot of hand-washing and I heard somewhere that blowing your nose and coughing might help expell "stuff" out that you might've breathed in when somebody sick sneezed in your vicinity...lol!

I guess anything to try to help things.

Best luck to us all.

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Go to the ER before it gets worse.

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Glad your GP has done more tests and you’re overseeing your obs TAS. This is a good overview of sepsis which unfortunately I’ve experienced twice with infections. There’s nothing to suggest this is what you have it will experience but it’s wise to be mindful of it.

mayoclinic.org/diseases-con...

Whilst you should always go to A&E (ER) if it’s an emergency or you are feeling very unwell or have injuries, the reality is this isn’t the place to be in the U.K. medical system for ongoing chronic conditions to be treated. At the moment it’s also a ‘soup kitchen’ of bugs and viruses!

Guide to A&E Depts;

nhs.uk/NHSEngland/AboutNHSs...

Best wishes,

Newdawn

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Have they given you Tamiflu, or one of its equivalents? You know that flu is dangerous for folks like us.

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Tamiflu really doesn't work well...

From the Cochrane Review 2014...

Regulatory information on trials of oseltamivir (Tamiflu) and zanamivir (Relenza)

We have used data from 46 trials (20 oseltamivir and 26 zanamivir studies) in this review.

We identified problems in the design of many of the studies that we included, which affects our confidence in their results.

We found that both drugs shorten the duration of symptoms of influenza-like illness (unconfirmed influenza or 'the flu') by less than a day.

cochrane.org/CD008965/ARI_r...

The Tamiflu story BMJ

Our first open data campaign initiative relates to a public promise Roche made in 2009 to release full clinical trial reports in response to an investigation by the BMJ and Cochrane collaborators Peter Doshi and Tom Jefferson.

The bottom line:

WHO recommends Tamiflu, but has not vetted the Tamiflu data.

EMA approved Tamiflu, but did not review the full Tamiflu dataset.

CDC and ECDC encourage the use and stockpiling of Tamiflu, but did not vet the Tamiflu data.

The majority of Roche's Phase III treatment trials remain unpublished over a decade after completion.

In Dec 2009, Roche publicly promised independent scientists access to "full study reports" for selected Tamiflu trials, but to date the company has not made even one full report available.

bmj.com/tamiflu

Also see..

Center For Research

center4research.org/tamiflu...

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I am sorry you feel so low ATS50; I have had the exact same experience a few times now the past nine weeks. I am doing okay, then I just drop into real pain and unwellness - hard to breath, wracking coughs, fatigue and general achiness. I just cannot tell what is causing what. I was successful today in getting my hematologist, and primary care doctor, to talk it over. They are sending me to a pulmonologist, becuase a lot of CLL related respiratory distress can be very dangerous and perniscious.

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