Yes - I still don't know for certain which co-infection(s) I have. I suspect Bartonella may be one, based on the severe psychiatric nature of my symptoms, but it's hard to know because I don't have other key indicators like the striae, the pain in the soles of the feet. This thing has been going on for just over a year and I still don't understand what it is. It started with a terrible flu unlike anything I have ever experienced and I haven't been the same since. I don't have painful joints, nausea, physiological things of this nature that lots of Lyme people get. For me it's rooted in some kind of relentless encephalitis; I feel the inflammation in my brain at all times. It has comes with psychological symptoms, terrible tinnitus, insomnia, constipation, pseudo-seizures, strange neurological phenomena throughout my body, "Lyme rage", inability to regulate my emotions, brain fog.
Otherworldly, indeed. The isolation is horrible. I don't know who I am anymore and at times I feel agoraphobic. My life has been completely shut down and I too lost it all. My Lyme-trauma-brain will not stop trying to put it back together, even though it's all gone, and so I re-live the losses every day, all day. Lost my spouse, stepchildren, my home and beautiful farm, my sense of self, ability to feel anything other than panic, confusion, sorrow, grief, chaos, despair. Every day is an assault of invasive rumination, crushing depression, air hunger, constant blaring tinnitus, balloon-like head pressure, twitching/jerking, episodes of vertigo, and on and on. I'm a prisoner inside of my own mind. Debilitating PTSD with no respite. I am constantly questioning whether the PTSD and all of the neuro-psychological weirdness is coming from the infections, or is it purely a consequence of the trauma that I have been through...the lines are hopelessly blurred. This neurological Lyme, it is the absolute strangest. It feels like the bacteria are lurking and inside of my mind speaking to me, telling me to kill myself, making me think about death constantly, against my will. Literal mind-control. I'm exhausted defending against it.
I hear you about being scared. I don't want to die, but every day I feel closer to being ready to go. I never wanted any of this. Living in it is absolute torture and madness. I have endured so much trauma that it feels like even if the infection was eradicated, I will be forever dysfunctional because of the psychological damage that it has wrought, which makes me feel hopeless and discouraged about even trying to continue to sift through everything you have to do to find treatment. I just don't have the fight in me that one needs to contend with Lyme and beat it. Every day I feel closer to going ahead with it and ending my suffering...but every day the fear wins and I live another day inside of the pain.
Fear of N not working: for what it's worth, the more I've read about it, the less afraid I am about this part. There is a lot of talk about the risks of vomiting, but I think this is blown out of proportion. I tried to get meto from a Mexican pharmacy but it appears to be held up in customs. I'm not so worried however and I think that I will be fine without using an antiemetic. The biggest hurdle is getting over my fear of actually following through with it; conquering my survival instinct. I don't think I've reached a point where I can attempt to drink N without the risk of my mind winning and causing me to spit it out. Perhaps practice runs might be helpful here.
Fear of doing it: I'm assuming you mean more of a compulsive thing here. I get afraid of this too. I have days where I herx so badly that I am absolutely certain that I need to die TODAY, and my brain latches onto it so tightly. But then, at least for me, it's not as easy to follow through with N compulsively as other methods might be because there is at least some planning involved, fasting for 8 hours etc. So that at least offers some inherent protection against following through in a moment of panic, rather than being rational and calculated with the process.
Fear of destroying lives: yes, it's so difficult to wrestle with this. No one who has not experienced what we have experienced can possibly understand. Perhaps if they could, there would be a particular kind of compassion that helps them let us go without so much resistance. I shudder at the prospect of how much it will hurt my mother, who has sacrificed so much to be there for me as her life has been turned upside down by this. I think ultimately I will have to come to accept that my family will be terribly hurt by my death and there's nothing I can do about it. It's awful.
Just obtaining N is a huge hurdle that you have successfully conquered. I hope that you have found some peace in that.
I don't know if I have Bartonella or not, but either way I have read a lot about Bartonella and about people's experiences living inside of it. I am so sorry for that demon that has come into your life. No one deserves to suffer in this way.
