Infection

[Tracibfine]

Crazy question.....but how do we know if we have an infection if people with CLL already have high WBC normally?

[Tommays56]

Hi Tr

In my case of stage 0 CLL if something out of the ordinary is going on I still get a fever and relentless night sweats

During my recent COVID episode at hospital my white count went down to 13 but a month later back to its 24 and climbing slowly and for good measure 7 weeks of change the sheets night sweats that finally stopped again

[AussieNeil Administrator]

This is why there's a section on your blood test results called the Differential. This section lists the different white blood cell types that together make up your total WBC. Counts of the different white blood cell types can go up or down with different infections. There are more direct measures of infection available via a blood test - CRP (C- Reactive Protein) and ESR (Erythrocyte Sedimentation Rate).

The CLL cells are included in the Absolute Lymphocyte Count, which is why tracking this, rather than the WBC, is a much more accurate measure of changes in your CLL tumour burden in your blood, particularly when your WBC is under 30 (or 30,000 for most USA labs). See: healthunlocked.com/cllsuppo...

See also why it is so very important to totally ignore the percentages listed in the differential. With CL,L the ONLY time you ever need to use the percentages is to work out the absolute counts if they aren't provided. This post explains why percentages can be very misleading when we have CLL: healthunlocked.com/cllsuppo...

Neutrophils are the most important infection fighting white blood cells and can be listed as neuts and/or segs. Eosinophils can increase with allergies, which is useful to know, as an allergic reaction can be confused with an infection.

Neil

[JigFettler Volunteer in reply to AussieNeil]

CRP is still used with abnormal immunity infections. That remains reliable as a measure is not entirely clearly to me. Its a wonderful test - so easy to do. And very reassuring - I would seek one at any time. Jig

[bennevisplace in reply to JigFettler]

What does the CRP test really add? I had a few visits to emergency with high temperature while on treatment, and each time the team's response to this and raised CRP was IV antibiotics, which did nothing to quell the infection but probably killed a wide range of much needed gut bacteria.

We need a rapid test that distinguishes between bacterial and other infections.

[AussieNeil Administrator in reply to bennevisplace]

CRP levels can be raised by viral infections, but "People with very high CRP levels are most likely to have an acute bacterial infection".

From What does it mean if you have a high C-reactive protein?

medicalnewstoday.com/articl...

[JigFettler Volunteer in reply to AussieNeil]

Good link!We as patients must try to understand that IF we have a developing sepsis, our Drs will not have a lot of time to decide whether to treat or not.

Hence, bloods for routine tests and blood cultures. Then ivi and antibiotics before blood culture results are back.

CRP is just one of the indicators. Ideally, urine, chest xray, as well as a physical examination by the Dr.

That's why we are urged not to delay getting infection treated promptly. Lots to do.

Jig

[JigFettler Volunteer in reply to bennevisplace]

Well, means a lot, if you are the doctor tasked to do the best for your patient, and prevent or treat a sepsis. A low CRP is reassuring, equally one that is significantly raised cannot be ignored.

The tricky issue is when a CRP is modestly raised. Then it can be repeated to see if its rising. Or falling.

Jig

[JigFettler Volunteer]

This is not a crazy question! Its a very important question, on many levels.

A question I asked my Haem Team when I had FCR.

The answer was: You will know!

I was concerned that due to my CLL and the FCR effects on my white counts I would not mount an immune response and so also not get a fever and the other things that go on that make us feel ill, like pain, swelling rash etc.

All of that still goes on. I cannot say I understand the immuno- pathways - but I believe we will all know.

An important question - also knowing that infection is and remains such a burden for us all. (Threat too - but that is such a negative word.)

I am now post FCR, my white cells look a little better, but I still take care of each and every scratch I may get.

Jig

[mrsjsmith in reply to JigFettler]

Jig I totally agree.

I might not have known what the problem was but I always knew there was something going on that wasn’t quite right. Problem is then persuading my GP I am not a hypochondriac and to investigate what is happening.

Colette

[JigFettler Volunteer]

You are in UK like me.

I have an agreement with my GP, its an unwritten agreement, that I will do my best to make his (male GP) life as easy as possible as I navigate this complex, serious and long CLL journey. In return, if I ask for help, I will get it promptly.

It is sad to hear that your GP required any persuading at all to respond to your symptoms.

Many GPs though, still are unfamiliar with CLL.

They will diagnose a couple a year, and then most of the CLL care is done by the hospital. So may understandably not know, or feel out of their depths.

What do you think?

How can we as a group (30,000 with CLL in the UK, 10 new cases daily is the rate, est 1,000,000 world wide) help our GPs to help us better?

Jig

[mrsjsmith in reply to JigFettler]

Jig,

It took some time when I was being told ‘ it will go away ‘. Eventually I found a great GP in the practice and suggested she write on my notes that I am not a hypochondriac, nor stupid and to take me seriously. No idea what, if anything she wrote, but I have no problems now and any issues are taken seriously.

It is difficult for them because they don’t even know how to spell Ibrutinib. As I understand I am still the only CLL patient in a large London practice.

I insist that any new prescriptions are checked for contra indications. One GP was sceptical until she saw the long traffic light list flash up on her screen !

I know at Kings they have had in-house GP training in Haematology, but it’s such a big area with new medication all the time.

Colette x

[Tracibfine in reply to JigFettler]

The person who said this to me was a Hematologist not a GP.

[cajunjeff]

Infection is a very broad term that includes a wide range of pathogens, typically bacteria and viruses. Infections can be diagnosed in a variety of ways and in most cases lab work is not even necessary or routinely done.

I know I have skin infections because I see them. I know I have a cold because I have had enough to know. I know what a sinus infection feels like. I know what stomach bugs feel like. Some infections might be harder to diagnose and require labs and or imaging studies or other tests.

I can’t really recall ever having an infection of mine diagnosed by my wbc count. I suppose there are some circumstances where my Cll and high wbc might mask a high wbc due to an infection, I just don’t think as a practical matter it’s a problem as infections are usually accompanied by symptoms and can be diagnosed in a variety of ways.

[SofiaDeo in reply to cajunjeff]

I too can often just "feel" when something is off, This is one reason why an anti-inflammatory diet is key. You need your nervous system to be at its best so you can "feel" the difference. I have not spiked a temp even with documented bacterial infections ever since around the time I got the CLL diagnosis. It's an odd aspect of my disease. But I can still feel pulsing in my kidney/bladder or teeth or skin that alerts me to an infectious process. I take pictures of odd things on my skin, to compare with later if needed. I check my body out twice a day normally, more if something seems a bit suspicious. I have had approximately one infection a year and have yet to be hospitalized for any, I can catch them quickly.

Sugar is an acid that nibbles away at our capillaries & tissues, destroying the nerve endings and impairing healthy blood flow/tissue perfusion. Other chemicals like arachidonic acid in meat (especially non grass fed) can lead to inflammatory cytokine release that also can damage things. If you can optimize your diet and don't have comorbidities like diabetes or some nervous system dysfunctions, you ought to be able to "feel" when things change in your body, after a while. The first thing IMO is just to start paying attention when you do things like meditate and deep breathing, or other exercise. Cut back on drugs that affect pain to where you can perhaps be only mildly uncomfortable, instead of completely out of pain. Of course this doesn't work for all pain states, but it can be helpful if it's possible to at least try.

[opal11uk]

Fever and high temperature, call an ambulance, thats what I was told.

[JigFettler Volunteer in reply to opal11uk]

Above 38°C. But, also if you feel ill, infection can present with low a normal temperature. Jig

[JigFettler Volunteer in reply to opal11uk]

Good call. But take care, in the UK certainly, calling an ambulance for a temp of 38° may not go down a bundle. A CLL discussion would be needed.

My 3 fever related admissions I went direct to the Haem Dept having phoned them direct.

That prompts me, I shall ask of our local service, and 111, what the CLL knowledge like.

Probably after the Easter break tho!

Jig

[opal11uk in reply to JigFettler]

They don't seem to know by CLL but it you tell them the full name they take that very seriously.

[otonal in reply to opal11uk]

I had a reaction that started 12 hours after Astra vaccination. Temperature 38.1, feverish and sleepy. It came down fast once I took 2 paracetamol. I was not expecting this as I had very few side effects after the first. I will be better prepared for the booster. Thankfully no need for an ambulance.

[JigFettler Volunteer in reply to otonal]

You make a valid point! If you get a fever after say a vaccine, different rules apply. The chance there is another totally coincidental cause for the fever is tiny. Tiny but not zero!

So remain vigilant.

I took paracetamol, especially as the last couple of flu jabs did spike a fever of 38

Jig

[Tracibfine]

I'm thinking more my gallbladder is inflamed. With possible obstruction. So, eventually will lead to infection. Aware that it is there, and wonder if worsening or infection can be detected as easily with CLL. WBC is already high, so no alarm bells would go off in a routine physical.

[Pacificview in reply to Tracibfine]

If you are having gallbladder symptoms, go to the Doc a.s.a.p. I had gallbladder symptoms back in 2012. I thought it was indegestion, well it got worse. Got so bad I had to drive myself to emergency almost passing out along the way. The abdominal cramps were horrific.

Emergency Doc diagnosed as gallbladder attack. Well, I spent a week in the hospital because I did a number on my pancreas (pancreatitis). I was self treating for indigestion and hoping my indigestion would get better when instead I had been having gallbladder attacks! Thereby making things worse by creating Pancreatitis.

Took a week for my liver numbers to come back to normal enough to remove the gallbladder. All the while not allowed to eat for a week while in the hospital.

By my delaying going to the Doc I almost croaked myself.

So a gummed up gallbladder with stones, clogged bile ducts causing severe pain. Caused pancreatitis, very bad liver numbers, hot sweats, bad stomach cramping, back ache, dizziness, passing out.

Gallbladder attacks ignored can cause pancreatitis. Pancreatitis ignored can cause death.

So if your having Gallbladder issues get them looked at pronto by a Doc.

[Smakwater]

Great Question relative to CLL.

As has already been stated by opal11uk "Fever".

Fever is a very common indicator. Although low neutrophils are usually relative to to a low WBC, we are often advised by our doctors when experiencing low neutrophil counts to regularly check our temperature as a way of indicating infection.

And as cajunJeff implied, there is most often a symptom of significance connected to an infection.

The best action is however, prevention.

JM

[MR2Don]

Based on the nasty infection I got before Christmas, white count goes up, neutrophils go up, but lymphocytes don't.After the infection cleared, mine came back down to the best level I've had since diagnosis.

BTW, the infection sent my liver markers through the roof and I all but lost the use of my legs! All better now, though.

[JigFettler Volunteer in reply to MR2Don]

Sounds like a very severe episode. So pleased your are recovered. Jig

[wizzard166]

Hey Traci

If it looks like an infection, smells like one, and walks like one, then I'll bet its an infection.

White count is just a number, and a high White Count might mean or not mean that a person has an infection; especially, if that person has Leukemia. The mix of types of White Count is a much more reliable indicator than total White Count. If the Neutrophils are way higher than their normal percentage of total White Count, then it is likely a Bacterial infection. Increased Lymphocytes are related more to viral infection, but also to CLL.

If you have a fever, are coughing up yellow or green stuff (or it is coming from your nose), or if you have swelling on your skin area with redness and skin is hot to the touch, you in all likelihood have an infection.

Carl