Cpnhelp.org

almost 1 year on clozapine it helps a lot

Good morning,I am posting my message both here and on the form in hopes that someone reads it.I have been suffering with chronic fatigue syndrome for over 20 years. Was only diagnosed in 2011 though. After many years of searching I finally found a doctor who was on board with me to start the protocol. However when the time came to start she shyed away and I am now left hanging.I am desparate because it is so hard to find a dr willing to help and I was very enthusiastic to start my treatment protocol. The disease leaves me dealing with lots of symptoms and minimal functinality and this was my last hope.I was wondering if anyone on this board can help me to find a dr who is willing to help. I live in Ontario, Toronto area however I am willing to travel.

About a week late this time but pulse #46 commenced earlier today at lunchtime.G.

Nearly done! Two more tabs and I get three weeks off! And, yes, it has been tough, as DW and Sarah warned me. I've been much better at taking my ABX on an empty tummy. I lost so much weight when I was first diagnosed, I was very skinny! But, 10 years later, I'm putting weight on, maybe too much, but I've a feeling it's good, and I feel sure, I'll be walking my very loved guide dog, soon.It goes like this ...I pop Metro as soon as I wake and again, about, 8 hours later.  The third, again, 7 or 8 hours later, just before bed, taking Roxy an hour, or so, before tea and Doxy, after, and supplements then, although I sometimes forget, but always take Bs.

I've been lucky, I've had reactions, but nothing too terrible.

Ok. To cut the long story short. For 2 years I have been dealing with prostatitis, urethritis and reactive arthritis after an intercourse. I have also problems with fast heart rate and body tempature which  I am always very sensitive to cold.I had symptom free time for almost 4 months. Then the thing came back again. Countless semen culture, urine culture ,some specific tests for chlamydia trachomatis pcr , mycoplasma pcr were negative. However last week a cpn test IgG came positive. Test value was 48 which was over the normal test value 22.I live in Turkey. I must say doctors are not helping me much because they are imcompetent even in the research universities. 

it’s been a fortnight since i finished pulse 3. After effects were nausea, fatigue, more fatigue, exhaustion,  more aching, basically, every reason to jump off the world. Then it, suddenly, felt so much better! Today, my drop-foot was quite severe, but, as Paul was there, to lean on, i still went for a long, long dog walk. I ache, as much as  before, but, really, that isn’t too much. Sleep has been elusive, i have drunk a little and blamrd that, but I had to drink champagne, at a funeral, two days ago, and, still, felt good  yesterday! i’ve  had night sweats but,  at 49, i think that is probably to be expected!

Last Monday, I was so inspired by JaneK's post, I decided to start a pulse myself. I am early this time but at least I get it in before my holiday. This is, I think, pulse # 45. I have one more day to go.

Finished pulse number 3 yesterday, it wasn't a walk in the park, but nor was it too difficult. Yesterday I was more awake than for ages, but, slept dreadfully last night, so i'm tired today and our long dog walk, on the beach, exhausted me, i ached (strangely, n my arms,hands and and elbows) but, again,not too much. I haven't had the CPn test, and won't, for the same reason haven't asked for an updated MS dx ... suggestion!  I don't think many of us here are 'victims', just people carrying their crosses with as much grace and humour as possible. And i'm looking forward to a drink tomorrow night!Jane