I have made up my mind that I am not going to continue with the CAP for now. The main reason for the decision is that I am not sure about the safety for me.
I checked about superoxidant and endotoxin as my doctor suggested. But I have a feeling that he wanted me to understand more about the harm they could cause to me than just their definitions. I haven’t been able to successfully find it.
I also received a kind email from severe MEite who has tried couple of long term antibiotic protocols and left with permanent systemic damage to her body. She respected my decision and didn’t want to scare me. But the fact that she hasn’t improved after the long term trial bothered me. I am grateful that she shared her experience with me despite she was in a bad payback.
When I tried two weeks doxycycline, I felt the antibiotic gave me the lift. However, it is not continuing. It is fair to say that I am struggling even more, although I cannot tell if it is just ME/CFS or reaction to the CAP. I read from somewhere that antibiotic helps inflammation. So, I’m wondering if the first trial of doxycycline helped me with inflammation, not bacterial infection.
The website clearly states that we would not see improvement for a very long time and rather we suffer severely when we start the protocol. But it doesn’t state the time flame, but they are suggesting years of bad reaction… Since I’m already suffering severely, I felt it wouldn’t make any difference. But I realised I’ve underestimated the risks.
I read some of the forum threads on the website. And it made me more question about feasibility for me. Some people were hospitalised from porphyria. ( Porphyria is a group of disorders caused by abnormalities in the chemical steps leading to heme production. It can be acquired via use of certain medications. Symptoms include muscle weakness, diarrhoea, seizures, constipation & mental changes.)
It also occurred to me that people who are reporting positive improvement after a few years of trial had more ability than I do. My body may be already too weak to get through endotoxin, porphyria and other negative effects from the protocol.
There also was talk about the doctors who endorse the protocol may be in danger of losing their licence depends on where they are. This made me feel very uncomfortable about the protocol even further.
At the moment, I am on the borderline of being able to take care of myself and not. If I borrow MS disability scale, I’m hovering around 8.5, sometimes bit worse. I cannot afford to let my health go worsen even a little bit. I really don’t know what would happen to me when I completely incapable of taking care of myself. It is a scary thought. I don’t gamble with my health. And my priority is still “Do No Harm”.
I didn’t start the second antibiotic. The doxycycline I’m taking now has 6 more days left. Once I finish the tablets, I will not continue taking the antibiotics. I will see my doctor on Wednesday, so I will talk with him about my decision.
I DO respect people who are currently undergoing the CAP and wish them all the best. And there are a few people reporting improvement from the CAP. I am not saying that the CAP is bad for you. The decision should be made considering all the factors and possibilities. It is just not for me…
At this stage, I should be more focusing on how to bring quality into my life and live happily with severe ME/CFS. It is a big challenge and often seems impossible. However, when I look at the reality, this has better chance to achieve than hoping for effective treatment for ME.