Azithromycin: "To do or not to do."

I would like my stools to have a slightly more "normal" fragrance if I can mention this in our public forum. Oh hell, it's our lives tht we are battling for here.

Best

Russ

I do have a breakfast diet that tips its hat to the stomach and regularity though - pro-biotic yoghurt + bran flakes and full fat milk (I can say that last bit now that the UK experts have come out and said full dairy milk is not bad 4u after all) + baked beans on wholemeal or granary or dark rye toast. I also get through about 2 kg of fruit (half that once you have stripped it down to the edible bits) a day starting at breakfast. I am lucky enough to live in Thailand where fruit is plentiful varied and cheap - between $1 and $1.5US a day per kg - I internationalised that to US since some cannot do the mental gymnastics to convert GB pounds and very few would know what 30-45 Thai baht is worth! 

Ant thoughts about "Prebiotics"

Anyone else who might read this please respond if you have some experience or knowledge on the subject.

Best

Russ

It has been my experince that my life has been changed in such a dramatic way. No new infections and much increased energy levels that it seems it should be a mainstay of treatment.

Glad you are doing so well.

Best

Russ

Bes 

Thanks

Russ

An old topic but a useful one! Yes I think I will continue on Azithromycin.....I take 250mg Monday, Wednesday & Friday. It has made such a big difference. My GP has suggested I stop it for a few months in the summer but I am reluctant to do so. She is very good & lets me make my own (within reason & with discussion) decisions! Maybe next year I will try coming off it for a break. Just don't feel like risking it at the moment!

Regards

Jean

4jean, thanks for your reply. Very improtant for me at this time. I have been on the 500mg dose MWF for four months and began to "feel" overdosed, like I was "drinking a cup of Roundup three days a week. I could smell the Az in my urine and in my breathe. I checked online for dosings for the Az trials and noted that 250mg is a common dose.

I weigh 145lbs.

So Im glad to hear of your good results and now I can get with my doctor and try the 250mg. Half the dose sounds much better.

Best

Russ

Hi again Russell.

I think the 500mg azithromycin capsule is a one-a-day dose for the 3 day period typical dosing to fight an infection. When I took up azith 8 weeks ago I read-up on the various guidelines published on the internet and given in the medecine leaflet included in the box. In fact because I buy my meds over the counter in Thailand and because I kept finding a cheaper variant I have three different manufacturers leaflets to read. The dosing is always 250mg x2 for 3 days or 500mg x 1 for 3 days as an infection-fighting dose and (when mentioned) a 250mg x 1 3 days a week prophylactic dose. Like Jean mentioned, Mon, Wed, Fri works best for me*. 

Like others on here I found azith to be a really good antibi. It had an almost immediate miraculous effect (like next day all my bronchX symptoms lifted and I felt euphoric) and has now settled down to be not quite miraculous but nonetheless a hugely significant improvement on my disease. 

I am temporarily back in the UK, now preparing a brief for my Papworth specialist, who I see tomorrow for a routine check-up (with CT scan already acquired in Thailand at half the UK price and no doubt breathing tests and bloods to be done!). So forgive me if I kill two birds wth one stone and give readers a rather more detailed analysis of the significant improvements I have experienced with azithromycin over my previous antibis - which had tracked through a 2 year period of ciprafloxacin, levafloxacin, amoxicillin+clavulanic/aka 'Augmentin', doxycycline and moxifloxacin/'Avelox'. Improvements have been as follows:

- with previous antibis I felt an infection was only potentially a couple of days away and I had to step up from a prophylactic dose at least every 2 months (and this step-up had not been an overreaction; I always waited for at least 3 flags of impending infection). I now feel that there is nothing lurking waiting to strike.

- my sputum had never been violently green or brown, even under infection, but it has usually shown some trace of grey or light brown (think capuccino swirls). With azith my sputum is now almost always white and translucent

- my sputum is much reduced in volume - reduced to about 10-20 ml/day compared with 40-80 (depending on infection presence) before

- I now rarely get any feelings of inflammation lurking in my lungs. Previously I would feel an onset during the evening, continuing through the night and making me feel a bit horrid for the first 30-60 minutes on waking

- I previously had boughts of temperature control issues; heightened temperature, cold sweat, night sweat (though rarely fever). In the past this had invariably been the last flag that tipped me towards full dose from prophylactic. Have not had even a mild experience of any of this in the last few weeks

- I have very rarely had any feelings of exhaustion or tiredness. Previously I would have periods (typically a week or so) when I would get exhaustion attacks for an hour or so once a day, ocasionally twice

- My coughing is much reduced and not present at all on some days

- Previously I would always get a significant crackle at the bottom of my lungs if I pushed 'to the bottom of an exhalation', even when I had got rid of all sputum in a daily physio sesion. Now at worst it is a slight dry wheeze at the bottom once I have finished my (now much shorter) physio sessions

- I now have days when I don't feel the need for a physio session and I dispense with them if I am having an otherwise super-active day

- I always mentally self-score my daily half hour swimming exercise as 1 (not peasurable, feeling a bit tight chested, short-breath travel, cough-inducing) through to 3 (a pleasure with clear breathing). Before azith I mostly scored myself 1s and 2s, now mostly 3s. I now do my 50 lengths in one go - prior to Azith I stopped avery 10 lengths. I no longer feel guilty/insecure if I cannot get to do my exercise on a particular day.

- My mood is much improved as measured by singing along to music in the car and the return of occasional boughts of endorphins/life-is-good thoughts.

- I now have the confidence to be experimenting with reducing the dosage of my sideline support drugs, which are: 'Symbicort' (corciscosteroid/beta agonist), 'Puroxan' (a doxyfilline bronchodilator) and 'NAC Long' (acetylcysteine mucolytic). I expect to have the confidence to try dropping back to no antibis within the next few months

I did have a 2-3 week period recently when I had stomach pains, constipation and strange changes in stool that made me concerned about antibi side effects at best and some carcinogenic-flagging concerns at worst. Everything has been back to normal recently thankfully but I'm keeping a watch on that and may consider a colonoscopy as I have also unexplainably lost weight from 78/9 to 75kg in the last few months. I only take probiotic yoghurt (don't know anything about pre-biotics which you questioned earlier- must look it up) and cider vinegar/honey. I have no idea whether the latter, learnt about from you guys on 'Patient', does me any good from a gut flora viewpoint - but it does seem to be beneficial when it comes to my occasional acid stomach outbreaks and it makes a nice change to the buckets of plain bottled water I have to drink daily in a climate that rarely drops below the 32-40 degree range from 8 am to 8pm!

Bit of a side issue but maybe it triggers a thought with anyone else who self-medicates out there. The only bad period I had in the 2 months period of azith was early on when I switched my prophylactic dose from a European (Sandoz/"Benoyt" brand to a cheap generic Thai alternative. I immediately went markedly downhill and it took a couple of weeks of return to prophylactic Benozyt to get me back on track. Could have been coincidence, but we do get (apocryphal?) stories about dodgy local drug copies in the expat blogging community here.

* I have to keep my stock of azith and other heat-sensitive meds in the fridge and take out a three pack on Monday with no need to think about having it with me if I'm off somewhere for the weekend.

Hi Steve,

Thanks for your thorough description of what you have gone through. I appreciate you sharing and although I have mild bx and haven't had to take Azith yet, it is great to learn about it and have it in my arsenal for later - if needed.

It's wonderful to hear how well you are doing and it gives us all hope that we can get better and enjoy life like you do.

Ida

Yasmin

Before Az I would get chest infections every time I got a cold. Probably about 4  times a year. But it was some years ago now so don't remember clearly! And I would have lots of most of the time. The difference has been amazing.

Do you use any bowel bacterial replacement?

I also realize that since each new lung infection adds to the damage to the bronchioles, that this treatment is probably slowing the progression of the disease also.

Best

Russ

I remember how you spoke of the merits of apple cider.

Keep me posted.

Russ