Topics Alert

Illusions: I Have CLL but I Never Get Sick

Date: September 2, 2024

I wish I had a dollar for each time I heard this: “I have CLL and I have been around people with flu, colds, etc. many times for the past two years, and I have not gotten sick even once”.

People associate “getting sick” with the symptoms the body uses to fight the infection. Over the eons our bodies have developed techniques to fight the constant barrage of pathogens that life throws at us. This appropriate gearing up to fight the invader are the symptoms that we associate with being sick.

• For example, a fever raises the temperature of the body, and this is lethal to bugs that are able to do their stuff at lower body temperatures. At higher temperatures, the advantage shifts to the host.
• Sneezing is a good way of expelling tons of germs from the lungs.
• A drippy nose and watering eyes are the body’s way of generating mucus to trap the bugs in your nose and eyes, and them expel them from the body.
• Body aches are a side-effect of the cytokines that are up-regulated in order to create more infection fighting troops. They also get you to go to bed and rest, let your body get on with the job of fighting the bug.
• Barfing up and lack of appetite is a good thing, as a way of expelling potential toxins in what you may have just eaten, and giving your digestive system a chance to rest and recover.
• Pain, in general, is something that the body uses to warn you that things are not quite right. One of the problems with peripheral neuropathy (as in diabetic and leprosy patients) is that they do not know when they have hurt themselves, stubbed a toe or something equally trivial, if it is attended to promptly. Without the pain signal, there is more chance that the wound will go unattended. In moderation, pain is your friend. Would you rather you did not feel the pain of an appendix that is about to rupture? Or the chest pain of an imminent heart attack?

Sure, many of you get none of the usual symptoms when you have been exposed to an infectious organism. Because you are immune compromised, your body does not do what it has to do to fight the infection. You still have the infection, and if you are lucky it dies out and you never know you had it in the first place. But the telling statistics of 50% of CLL patients dying as a result of infections says it is more likely that the infection has a chance of growing silently until it becomes something that even your body cannot ignore, and you end up in the hospital. By this time the bug has had a chance to get entrenched, and the high levels of pathogen in your body will need heavy handed treatment with antibiotics and the like. Warning signs of infections are good things, they are the tell-tale that lets us know something is going on, at a stage when the problem is easier to deal with and nip in the bud.

The lack of response to infections is very similar to the lack of response CLL patients have to immunizations / vaccinations. Your body does not “see” or respond to the small dose of flu vaccination, any more than it will to the actual flu bug when that comes around.

While I am on the subject, I read someplace that CLL patients do not have to worry about the possible H5N1 bird flu pandemic, because many of its victims die from an over-the-top immune response “cytokine storm”. Since we are immune compromised and don’t generate a cytokine storm, the theory goes, we are not at risk. Right? FALSE!!!

First, as folks with less than a full deck when it comes to immune protection, we are more likely to become fully infected even with a small viral dose. Healthy patients can generally fight off a small viral dose, not so we.

Second, we may not exhibit the signs of a cytokine storm (and therefore more likely to walk around and infect a bunch of other people, the quintessential “typhoid marys”), but we too are fully at risk of the unchecked and growing viral load in our bodies. Eventually it will overwhelm our lungs and fatal pneumonia will set in. Healthy people will demonstrate the early symptoms of viral infection, may be they have a chance of surviving it because they will get on anti-viral medications right away.

Just think about it. AIDS patients also have reduced immune function, they too do not mount over-the-top immune responses to bugs. No cytokine storms for them either. But AIDS patients are more at risk to each and every infection known to man. As CLL patients, you are in the same boat.

Bottom line - the lack of immune response symptoms is just that, a dangerous lack of response to what is ailing us.

We have just published a full-length article on the CLL Topics website on this subject. After you finish reading our full-length article I hope many of you will get religion about your immune compromised state and go the extra distance of taking daily precautions. The grim facts of CLL and infection related deaths make this topic too important to mess up.

Doom and gloom? Not on your life!  I am a fighter, and I believe there are plenty of sensible things we can do to improve our odds of survival.  Complicated?  Yes.  Confusing?  We hope this article will make it a little less so.  Please read our review Infections In CLL: Who Is Most At Risk?

Be well,

Chaya
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