I have been on CPN treatment for Chronic Fatigue for over a year now, and have been very bad at keeping tabs on this forum. I have done really well until the last month or so, but I really just followed the protocol, and stuck on a relatively low sugar diet, which seemed to help me in the past. Right now I am struggling a little, and realizing that I need to keep better tabs on the forum: to receive your collective help and help others too. I struggle to keep up with my email and so stopped getting the automatic messages. In fact I mostly struggle to keep up with my life in general - I have a family and am the sole breadwinner - somehow I've managed to keep up with a fairly demanding job, but it's very challenging. Basically I don't do much other than work, rest and spend less time than I'd like with my kids - my wife takes great care of our family. But I am really ready to be free of the Cpn.
This is my story. I have had chronic fatigue for over 20 years. I had an infection and really overdid it, going for a long run, when I was 18 years old. After that I was severely ill, and have had intermittent problems since then - essentially being tired with a relapsing/remitting pattern, sometimes so tired that its hard to do my work, other times tired but managing OK. I got a degree from a good school/university and managed to work and support my family for the last 20 years, but on and off have really struggled at times. I had a breakdown when I was at college - largely because I forced myself to keep going when I shouldn't have done so, but I managed to pick up the pieces and finsih my degree, as well as a PhD. Somehow in the midst of it all I managed to settle down, get married, move to another country (I moved from England to the USA) and have a reasonable career.
I came across this forum a while ago, but started getting serious about the treatment a year ago, when I was so ill that I was thinking about giving up work. This would have been a disaster for my family - my wife hasn't worked for a decade, we have 4 kids and no family near where we live. Fortunately I managed to get some help before I had to do that - both through this forum and by finding a Lyme specialist who was willing to treat me.
I went on NAC and initially had a pretty strong reaction, actually developing a fever initially when the dose was high. Then I started a Whelden based antibiotic schedule, initially without pulses - but after a while adding the pulses (first Metronidazole and then Tinidazole). I never had really strong reactions to the pulses, but did at times feel a little worse on them. I got a lot better in the first year, and did a ton of stuff that maybe I shouldn't have - moving house (to a much needed bigger place). In general I felt much better - and was doing well, until about a month or so ago - when I started getting more tired, and really bad aching joings - especially knees and ankles and bad asthma - which always follows the tiredness these days. So currently I am back to struggling through life for a time.
My Cpn diagnosis is not as clear cut as some on this forum this is my diagnosis:
-Positive IgG test - 20x above reference range, but not significantly raised IgA test
-Strong reaction to NAC
-Bad asthma when I am tired
-Not too strong a reaction to pulsed Metronidazole or Tinidazole
-Seem to be helped by a ketogenic diet - I shared some posts on that when I was first around
Sometimes I wonder if I have a cocktail of infections - my doctor (who is a Lyme doctor) thinks I have Lyme too - but those tests are more controversial.
I know that I am more fortunate than many on this forum - my form of CFS is much less bad than what many folks go through and much less bad than MS. I am tremendously thankful for your collective help as it seems to have already made a real difference to me.