Another milestone has been reached, I've just finsihed my 30th pulse, and I have a few observations which I think are worth recording and communicating.
From the beginning I have been taking 200mg Doxycycline daily and 250mg Azithromycin MWF continuously and done a 5 day flagyl pulse every three weeks, so I would take 1200mg flagyl on MTWTF of one week and take the following week-end and the next two complete weeks off.
In that time the alopecia recovered to so such an extent that I need to go to the hairdresser once more. The hair still goes through phases of falling out, but the balance is on regrowth.
The sinusitis is improved but pulses continue to produce symptoms in that area and as I have had a sinus condition since my childhood this is not surprising. The good news is that since starting the treatment and after recovering from the initial snotty nose and runny eyes I have had nothing that you could call a cold or flu, not even a sore throat. Before treatment I would have a scratchy throat, burning tongue, face ache, ear ache, gum and tooth ache for 6 months every year, usually from November onwards. Being a teacher I was exposed to any bugs that was going and probably caught most of them.
Asthma is so much better, no more night time coughing fits, occasional raspy breath in the evening when pulsing, followed by a couple of productive coughs but that is it. I no longer have problems breathing when exercising at the gym.
Joints continue to be affected although the areas that are affected vary from month to month, so maybe wrists and shoulders for a couple of months, then maybe hips and knees...
I suppose the things that have made little progress so far are the IBS, the peripheral neuropathy in my feet and the bladder problems, although recently there have been some short periods when I have felt very nearly normal.
At around pulse 26 I felt that there had been little change in my condition over the past few pulses. Each pulse was much the same as the previous one, really unpleasant taste, nauseous, head in bucket feeling, chronic heartburn, sometime depression, consistently dark urine, could not wait to get to day 5. I did try on occasions to extend the pulse by a couple of days or sometime try to do more frequent pulses, but I was always knocked back by the extremely unpleasant taste and the heartburn problems. I tried cutting out the NAC at those time too, but to no avail. I was clearly stuck in a place where what I was taking was not progressing my condition enough to enable me to up my killing period.
This is when I decided to give Rifampicin a try and took 600mg a day instead of doxycycline. What a revelation... the next pulse was much more bearable, the awful taste was not so awful anymore, it was a bit difficult to tell what the urine was doing as Rifampicin does turn your urine (and your feaces) a nice red colour, but during this last pulse I ran out of Rifampicin (due to delays in the post) and for a couple of pulse days I noticed that my urnine was much less dark than was usual for me during a pulse.
Still a lot of activity in my sinuses and around my eyes, but some improvement in the IBS which has been a long time coming. The long and the short of it is that after about three months of Rifampicin I have been able to do a 14 day pulse easily and without too many unpleasant symptoms. Even six weeks ago this was not possible... So my future schedule is Rifampicin, Azithromycin and 14 days on 14 days off Flagyl and lets see how it goes. I'll keep you posted.