Guys I thought I would post this –it might help some out there. I live in Australia. I have had CFS for around 20 years & have always been able to hold down a job (at times coming home early for a nap). I have still been able to get out & exercise (I love cycling & skiing!). I live in Australia. Often it takes me a while to recharge after these activities. You could say that I was running at about 70% of where a healthy person would be. My main symptoms are fatigue & brain fog. After visiting 18 different Dr’s finally one diagnosed me with CPN & I ended up seeing a Dr who is happy to treat this in Australia. He started me on the tinidazole, roxythromycin & minocycline. After not herxing on any of these he switched me to a longer pulse using the metronidazole. After around 1 year I got extreme muscle weakness (couldn’t even ride 1 km on my bike) & the Dr took me off the minocycline. During this time 1 significant thing that happened was that I bought some curcumin (tetra hydra curcumin oil). I took 1 squirt per day for 2 months & nothing happened. Then 1 day I had a sore back & asked my wife for a massage & I grabbed the curcumin to use as massage oil. She put 6 squirts on my back & then 1 day later I was stuck in bed for 3 days. Now I know what a herx is! Interestingly the curcumin is the only thing I ever herxed with. I built up the dose until I could tolerate 10 squirts with no reaction.
I found that when I tried to build the NAC up above 600 mg per day I ended up with sweat smelling like sulphur & other random stuff (NAC contains sulphur). I also can’t tolerate red wine with high sulphite levels in it – it makes me really tired for a few days. I suspect that my body just can’t process it properly. But I could be wrong, it may be that I still have a significant CPN load & can’t tolerate it for that reason.
About 18 months into the CAP I started breaking nails at work etc. I am a guy who cuts his nails short! For some reason my nails had turned brittle. After going on the biotin this problem fixed itself after about 1 month. I thought that I would have to wait for the full nail to regrow but this wasn’t the case.
I continued with the other metro & roxy until I got to pulse 24 (24 months on the CAP). I just couldn’t complete it I was feeling so bad. It may be that I overdosed on a vitamin or my body was fed up with the abx. I am still trying to figure this out. For the last 2 weeks on the CAP I put on ~ 2kg. There was no change in my diet – when my body isn’t happy my weight, cholesterol & blood sugar all go up. This has happened before when I was on antidepressants.
My blood tests indicate that the CPN has died off (not all gone yet). Also the blood flow in my neck veins has improved. The CPN block the neck veins & have a party there. An ultrasonic measurement of the flow in the veins picks this up & seems like a great tracking tool to use. It is a slow improvement over 2 -5 years. It is worth saying that the veins on the opposite side of the neck to the blockage take up the slack & have higher than normal flow. I am now feeling somewhere between 60-70%. It varies on the day. I am trying to exercise –my leg strength is around half of what it was before I started the CAP!
My brain fog has only alleviated since I have come off the CAP.
The path forward:
I am continuing with all supplements & will use abx 2 weeks every 2 months to keep a lid on the CPN. I will keep rotating through the scientifically proven non-prescription CPN killers. I haven’t yet tried leucine, isoleucine, resveratrol, quercitin, lysine. I have been using vitamin D, E, curcumin & biotin already – they have all been documented as killing CPN in their own right.
If anyone has had any success with leucine, isoleucine, resveratrol, quercitin or lysine let me know!
I figure that the more ways I try to kill the CPN the better off I will be. Always useful to have a few good tools up ones sleeve J
As a side note a friend up the road has FM with significant pain & migraines. They got tested & have CPN as well. They are improving significantly on the CAP. So as a lot of you know CPN can cause all sorts of varying symptoms.
Many thanks for all who have helped with questions & support from the forum! I may not post much but certainly read it!!! Many thanks also to those people who are recovered but choose to spend valuable time helping the rest of us!
All the best,