At the last appointment with Dr TL, we had a bit of tension in the air. We discussed about the possible risk from the CAP.
I’m still on just Doxycycline until I feel comfortable to add the next antibiotic. Unlike I first tried Doxycycline, it is not giving me any lift at all. I continue struggle with limitations and fatigue. And to be honest, I am having bad flare up with more symptoms and pains than usual. When people with MS undergo the CAP, they experience pseudo flare ups. So I’m guessing that this is something like that. I must read about it soon. The CAP is a long term treatment, so I shouldn’t expect to see the improvement now.
Dr TL didn’t buy it. He asked my understandings of the CAP. He acknowledged that the theory behind the CAP is reasonable and understandable. But he didn’t think I have the full knowledge of the risk involved. He expressed his concern on over using antioxidants.
He has very good knowledge of supplements. This actually surprised me because most of GP don’t pay attention to them. Dr TL can tell me which one is effective based on the proven evidence. He can also tell me where I should go and buy exotic herb. (But I cannot find the shop without someone’s help… I’m depending on the Chemist in the little shopping plaza for the supply of medicines and supplements.) He knows histories of supplements and keeping his eyes on ongoing researches.
To my understanding, CAP is antibiotic treatment and recommended supplements are to reduce die-off effect. The use of supplements is to get rid of die-off effect before it causes harm to my body. I was educated that the medical term I should use is endotoxin and was given homework to understand it better. Obviously, things are not that simple and I need to know more.
The way Dr TL sees CAP is a combination of antibiotic and antioxidants. He knew some cancer treatment protocol uses huge amount of antioxidants. Its evidence shows that it might help treating cancer, but patients end up with shorter life span and/or kidney damage. That is what making him worry about me. The difference between cancer and ME is that research into cancer keeps getting funding despite of not producing enough evidence of effectiveness for 10 years and research into ME stops when one off funding runs out despite of showing positive evidence…
We were only referring evidence to prove each other’s point. Since the research into the CAP for ME/CFS was inconclusive, I didn’t have evidence to prove what I’m doing is okay. And Dr TL is right in everything he said to me. There is no evidence of safety.
I tried to explain that I am not taking much antioxidant yet and the different understandings on the purpose of supplement; to protect liver. But he said it is the kidney that could be damaged and I would have to be on dialysis. Maybe he misunderstood that I had to take all supplements listed. However, he was dead serious and I couldn’t say anything anymore. And I realised that there are more risks involved in the CAP than what I found out from the website…
To tell the truth, he scared me and made me doubt about the CAP. I knew it was not what he was doing. He wanted me to be sure that my decision for CAP is based on the full knowledge. Am I making a big mistake and harming my health further without knowing? At this point, nobody has the answer for me. Not even Dr TL.
He explained why he concerns about overuse of antioxidant more specific than last appointment. It made me concern that many people with ME/CFS takes lots of expensive supplements and not feeling any better.
I was given another homework to understand superoxidant that cause the damage. (I haven’t done my homework yet, so I cannot tell you about it yet.)
At the same time, he expressed his opinion. He knew the exact reason why I want to try the CAP. I cannot remember the exact word he used but he said something like I was brave to have made the decision. But the motivation behind the decision was not honourable as he expressed, but was sheer frustration.
I felt I didn’t know what to do anymore. I was struggling to push tears back. What else can I do if I decide to stop the CAP? I was running out of options and I really don’t want to live like this for the rest of my life. Is it okay by Dr TL and by me that we keep having fortnightly meeting for who knows how long, and hoping that something would be noticed or something would come out? The fortnightly meeting is very important coping tool for me, but I worry sometimes that I’m just wasting his time. Not doing anything is also scary to me.
He is still endorsing the CAP for me and gave me the prescription for the next antibiotic. But he made it very clear that there is a serious risk involved. He cannot make the decision for me. And he is still respecting my decision. He just wants me to see full picture of the risk involved. From the tone of his voice, I felt he was telling me to stop.
He asked quietly how much hope I am investing into the CAP. I answered honestly that my hope is neutral. I am not expecting 100% improvement from the CAP. If I could get the little improvement from the CAP, I shouldn’t be struggling everyday and I could do some work. However, if there is a sign that the CAP is harming my health, I’m ready to quit.
The blood test I just had showed the low calcium level and he wanted to check parathyroid hormone again. The test request also included tests to monitor kidney and liver functions.
If I find endotoxin and superoxidant interesting, I will let you know.