How long should a course of antibiotics be? I was diagnosed with CLL in 2009 - still on w & w.

[snowdroprose]

This Winter season's chest infection started on 13/12/13 and I started a week long course of a/b (500mg amoxillin) on 19/12/13. By the end of the course I seemed to be getting better but, since the weekend, it has been getting worse. I woke up this morning with right-side earache. So now I feel proper miserable. This happened last year too. Just when I should be feeling festive and looking forward to a brand new year, I hate my life right now. I wee when I cough and if I take a mucus cough mixture I end up being doubly incontinent. Oh joy. Is a week long enough? I need some ammunition to take to my GP. Should I go to my local A&E - the hospital where I see the Haematology consultant?

[Kwenda]

I would not take any antibiotic or penicillin drug for longer than was strictly necessary.

The reason I say this is that I took these drugs for a long time once and it seriously affected the biome of my small intestines. My digestion has never really been the same ever again.

I would suggest a doctor’s appointment early tomorrow, or the A & E, to find out what is really wrong.

Long term use of these antibiotics can never be helpful

Good luck and I hope we soon hear of some improvement.

Dick

[Kam73 in reply to Kwenda]

Can immune deficient patients take probiotics? When you take antibiotics the good bacteria in your gut is also killed off along with the bacteria that is causing the illness. The probiotic helps balance your system out.

[Kwenda in reply to Kam73]

Probiotics do appear to work for some people, but it very much depends upon the individual.

I was advised to take several types, but they had no effect on me at all..

But I think you are correct in that excessive antibiotics can kill off all the ' good ' bacteria and then we have problems.

The latest cure for many people, and I read it is 80% effective in all cases, is a fecal transplant. This sounds very yukky, but there is now a way to do this with a simple pill.

[Cllcanada Top Poster CURE Hero in reply to Kam73]

Probiotics need to be discussed with your doctor like any supplement. Probiotic sepsis is rare but can happen in CLL. medscape.com/viewarticle/73...

Extensive study on this topic

ahrq.gov/research/findings/...

[snowdroprose in reply to Kwenda]

Thank you for replying, Kwenda. I'm sorry to hear of how badly you were affected by antibiotics. I've been given a 7-day course of Co-Amoxiclav and an appointment for next Thursday to monitor. Fingers crossed.

[HAIRBEAR_UK Founder Admin]

Hi snowdroprose

Sorry to read your infection is persisting. Can you call your GP's out of hours service ? It sounds as if you are in much discomfort and require some further help.

I can only imagine the fall out in A&E on New years day, but you will be seen and they will look into what is wrong. if you are running a raging temperature seek help now. otherwise see if you can get in early with GP in the morning, or request a call back.

Your GP may wish to test your sputum to identify the infection and help direct antibiotic therapy? Not quite the same but I have found since having CLL that some bacterial infections have been harder to shift and have often required an alternative antibiotic.

I hope things improve a bit for you soon. keep us posted

Nick

[snowdroprose in reply to HAIRBEAR_UK]

Thank you for replying, Hairbear. I've been given a 7-day course of Co-Amoxiclav and an appointment for next Thursday to monitor. Fingers crossed.

[Cllcanada Top Poster CURE Hero]

CLL patients need to demand a sputum test from their GP. For the immune compromised nasal and upper respiratory tract infection are often fungal or viral not bacterial like the general population.

Obviously antibiotics do nothing, but allow a week or so for the fungal or viral infection to get worse.

Please see you GP and get a test... then treatment can progress correctly...

~chris

[snowdroprose in reply to Cllcanada]

Thank you for replying, Clicanada. I've been given a 7-day course of Co-Amoxiclav and an appointment for next Thursday to monitor. Fingers crossed.

[Sirius]

Hi Snowdroprose, I was diagnosed in 2009 also. I developed what sounds like your infection (my fault not using anti-bacterial gel on my hands before going out with general public) Anyone who develops a cold should see their GP before the infection takes hold! My GP prescribed Amoxillin(500) after the seven day course and feeling slightly better I then I began to feel worse so back to the GP who prescribed Clarithromycin (500) for seven days. I take the last tablets today and I am beginning to feel normal apart from the CLL. I had severe sinus which resulted in blowing mucus and blood. I was sleeping upright at night otherwise would constantly cough. With the first antibiotics I too was taking mucus cough mixture during the night. This second course has worked slowly and last night was my first normal nights sleep after almost four weeks! Like yourself a pretty miserable Christmas. Get to your GP pronto before the infection gets a grip on your immune system!

[AussieNeil Administrator in reply to Sirius]

2009 must have been a bad year as I was diagnosed then too . My coughs/colds now typically last between one and two months, so prevention is definitely far better than cure. I've had a few very wearing coughs lately and this past winter I had one which wasn't too bad until I went to bed, but then I'd get a bout of coughing that would last an hour or more. Like you, I was sleeping propped up.

I take it from your comments that you were taking a cough suppressant (mucus cough mixture). It is questionable whether these work, but what is important is ensuring you help your body to expel the mucus by drinking plenty of water and having steam inhalations (a hot shower works well too) to reduce the chances of developing a secondary infection.

Glad to hear you are on the mend. That first good night's sleep must have been marvellous!

[Kwenda in reply to AussieNeil]

Since Neil you are in summertime, I pass this one onwards also, as it is in many ways similar to steam inhalation.

When I lived in a tropical country and someone had a sinus problem the doctors advised them to just go for a swim in the sea. The salt water soon cleared the nasal passages and the salt water was also good for killing bacteria.

Many friends with any coughs, colds or blocked sinuses would head for the ocean and all said it helped them a lot.

Dick

[AussieNeil Administrator in reply to Kwenda]

That was my mother's remedy, who had a nursing career. Might do that provided the sea is clean.

Thanks, Neil

[snowdroprose in reply to AussieNeil]

Hi AussieNeil. Thank you for taking the trouble to reply. I've been given a 7-day course of Co-Amoxiclav and an appointment for next Thursday to monitor. Fingers crossed. I'm really looking forward to a good night's sleep and a session in the pool. Isn't it horrible, having cold/flu symptoms but not being able to wrap up warm indoors because of sweats. To be honest, I can't tell if it's just sweats or whether I'm running a temperature as well. As I understand it, mucus cough syrups are not suppressants. They work by liquifying the phlegm to make it easier to cough up. This is why taking them can result in loose bowels - because they liquify mucus all over the body. One of the side effects of the antibiotics could be thrush - Oh joy. Years ago (pre CLL days) I used to be prescribed an antibiotic with a yeast coating so that I was not affected with thrush. Apparently, NICE then banned GPs from prescribing this drug.

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[AussieNeil Administrator in reply to snowdroprose]

Thanks for clarifying what you are taking for your cough, showdroprose. I'm not familiar with 'mucus cough syrups'. I was thinking along the lines of expectorants or suppressants and was concerned that you might be taking a suppressant to help you sleep. (Understandable given how desperate we get for a good night's sleep when we are suffering from the effects of a respiratory infection.)

I'm very pleased to hear your doctor is monitoring you closely - you don't want to develop pneumonia! One of the difficulties of living with CLL is that it affects your body temperature regulation and immune response, so you may not run as high a temperature as you would without the CLL.

Have you had vaccinations for pneumonia? If not, that's something to add to you 'to do list' when you are over the current respiratory infection. It won't fully protect you against all causes of pneumonia, but it is still a good investment in your health.

healthunlocked.com/cllsuppo...

[snowdroprose in reply to AussieNeil]

Hi AussieNeil - Pneumonia jab - that's a good idea. TA!

[snowdroprose in reply to Sirius]

Thank you for replying, Sirius. I've been given a 7-day course of Co-Amoxiclav and an appointment for next Thursday to monitor. Fingers crossed. I'm really looking forward to a good night's sleep and a session in the pool. Isn't it horrible, having cold/flu symptoms but not being able to wrap up warm indoors because of sweats. To be honest, I can't tell if it's just sweats or whether I'm running a temperature as well.

[Sirius in reply to snowdroprose]

Hi snowdroprose, Like you the Doctor asked me about sweats and I couldn't tell the difference!

I have taken my last tablet and it is my understanding that they will continue working for another 4 days? If I nosedive by Monday then I am back to my GP. The Clarithromycin was prescribed for pneumonia, bronchitis and severe sinus problems. The Doctor was concerned that the infection could progress to pneumonia because of my symptoms. Fingers crossed that we both recover successfully!

[ccm47]

Hi Snowdroprose,

Like others have said please DO NOT DELAY in seeing your GP again.

5 years ago, having been diagnosed with CLL and on W&W, I developed a chest infection which, like yours, did not respond to anti-biotics. As the Xmas season was rapidly approaching (23/12) I went to see my GP as an emergency patient. Just as well really since he diagnosed me as having pneumonia and called an ambulance to take me directly from the surgery to hospital. I finally came home in the middle of March the next year, having spent the next 42 days in intensive care in a medically induced coma, and then woke up to find my muscles had so wasted away I couldn’t move anything other than my eyelids! With the help of physio I did recover full movement and went back to work again in June that year.

The good news was that having responded to nothing except steroids my white blood count was below normal when I woke up. It took approximately two years to get back to its previous levels.

The bad news was that my lungs are scarred and I can no longer do semi-strenuous exercise as I cannot take in enough oxygen.

[Lenny123 in reply to ccm47]

Wow, sorry but it is almost a relief to know that I am not the only person suffering from the cycle of cold/flu, sinusitis, post nasal drip and bronchitis. Month long, every winter for several years. Just getting over this year's.

Antibiotics help, but only towards the end and should be taken for limited course, unless the dreaded pneumonia sets in.

So what can we do??

Don't smoke, or be around those who do.

Wear masks, N95 type,"Vogmask" is more socially acceptable, though expensive. Type with an exhale valve is much better. Wear in high risk situations, in crowds, on airplanes etc.

Stay out of crowds as much as possible. Crowds defined as being able to reach out and touch people beside you.

Door knobs, keyboards, can harbor germs for hours. Wipe down with anti microbial, be aware that these liquids need to be in contact for 3 minutes to be effective, a quick swipe is useless.

Handle door knobs and such with a paper towel, wash hands, with plain soap and water, after contacts after handshakes.

Avoid touching mouth, nose, especially after handling public property.

When you get into the cold/bronchitis cycle- sleep with head elevated, on side. Use humidifier(kept clean of germs). Drink lots of fluid, especially water. Teas are great, my favorite is Ginger tea, sweetened with honey. The astringent quality really sooths an irritated throat. Consider sinus washes

(eg "Neti pot), being careful to use distilled, sterile water. Soothing lozenges.

Use cough medicine for dry, hacking coughs, if cough is productive, not so much. Need to bring that phlegm up.

Wear a mask when breathing cold air.

Discuss Tamiflu, to be used on onset of flu symptoms, with Oncologist.

Take your Flu shot, early.

Vitamin D level may be important, deficiency is epidemic, in Northern climes. Proper treatment may need industrial dosing, physician supervision.

pneumonia is a dreaded enemy, if there is fever, difficulty breathing, chest pain on breathing, need to be tested, sputum culture, Chest Xray, blood tests.

[snowdroprose in reply to Lenny123]

H Lenny 123. Useful advice. Thank you.

[Cllcanada Top Poster CURE Hero in reply to Lenny123]

Please do NOT use neti pots if you have CLL... only used sterile sprays and rinses in a sealed container... even N99 masks are fairly useless against viruses, which are often smaller than 300 nanometers the filter limit of a dry mask...Generally, particulate surgical masks protect the environment from the wearer... respirators are required to protect the wearer from the environment...

[AussieNeil Administrator in reply to Lenny123]

Plenty of good advice thanks Lenny.

Hopefully fist bumping or even elbow bumping will catch on in place of handshakes. After all, if it is good enough for President Barack Obama...

ctvnews.ca/health/health-he...

[snowdroprose in reply to ccm47]

Hi ccm47. Thank you for replying. Scary story. Next winter, assuming I recover from this one OK, I'm definitely going to look for ways to protect myself.

[SusanBo]

Go to your MD asap. Amoxicillin doesn't always work - you may require something more broad spectrum - at any rate, you need to get it checked out without delay. Hoping all gets well quickly.

[snowdroprose in reply to SusanBo]

Hi SusanBo - thanks for replying. My latest antibiotic is Co-Amoxiclav. I've only got a 7-day course but I've got a GP appointment next Thursday to monitor progress. Fingers crossed.

[splashsplash]

Before knowing I had CLL, I had a productive cough that lasted for five years on account of it being wrongly treated as asthma by my GP with the usual antibiotics.

Then I insisted on seeing a chest specialist at the hospital. They found five particular antibiotics that worked on my mucus in test tubes and after three days and five years, the second one did actually work and I stopped coughing.

So my advice is to not put up with infections for so long that you get exhausted and also I found the cough started to return every time I had cow dairy so I stopped having it and have so far been cough free.

[snowdroprose in reply to splashsplash]

Thanks for replying, mollyfletcher and well done for persevering and getting your chest sorted.

[AussieNeil Administrator]

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