I got lyme ten years ago this summer, when visiting a woman I thought I was close to from frequent online interactions and phone conversations. I brought up lyme to her ahead of time, as she was in Connecticut, and she said it was safe. Au contraire, she lived 10 miles from Old Lyme, CT; deer ate her flowers; and her dog had had lyme. She didn't tell me any of this, and actually brought me into her garden to cut flowers, mentioning the deer belatedly. My life completely changed after that. Twelve days later I had a bullseye rash, fever, positive western blot. When I told her how sick I was from lyme, she told me I could have gotten it anywhere, even Central Park, where she claimed there were deer (which she knew was false as she'd gone to NYU at one point), and she basically refused to even admit I got it in her garden. Oddly enough, though, I've found the same dishonesty prevails online anywhere. I find myself frustrated listening to people's stories. I can't discern what is the truth. The truth is always subjective and people seem to put forth what they want you to hear. This is troublesome when I want to figure out if a treatment or approach might help me. In 2007, encouraged by someone who was doing salt/c and said he was finally getting well and would soon go back to work, I did four days of salt/c and really irreparably harmed myself. I don't know why it was so toxic to me, my kidneys etc, but though I recovered slowly over the course of a year from the immediate effects, I never lost the severe MCS that started after those four days. I was shocked to learn, after a month of emails back and forth questioning this fellow, that he'd been applying for disability while he told me he was getting well and soon would go back to work. He also had severe heart and kidney pains regularly during his experiment with salt/c, and at one point thought he wouldn't survive through the night. I believe he convinced himself those were herxheimers, but I still don't understand how he could convince me or himself he was getting well at the same time he was applying for disability (which he got after his hearing). I am very pleased to read my former hyperbaric doctor's blog and her daughter's entries on their success with ARVs. I never really knew her daughter, might have seen her in passing a few times. However, I was fairly close to my former hyperbaric doc. I never knew during the occasional hours-long conversations I would have with my former doc over the last five years, that she was so sick she couldn't get up for more than fifteen minutes at a time. I definitely knew she was sick, and housebound, but because I had no more information than that, it didn't ever occur to me she was also bed or couchbound. I can't infer without information. Now I'm not really sure how she's doing. I have a better idea from Ali's posting that she can take short walks and do some stretching exercise. That she can go to some community college classes and cook dinner. I still don't know what a short walk is. Is it on an even grade? Is a short walk ten minutes or thirty minutes? Without precise information as to how sick a person formerly really was and how they are now, I have no clue. If she had just written, "Now I can even exercise!" I would have assumed she was doing stairmaster for half an hour, which is what I would call exercise. Can I compare the half hour walks we had been doing on steep grades in Texas Hill Country, to short walks? I DON'T KNOW. As for scales, a karnofksy scale seems utterly meaningless to me. I have no clue what it means in terms of lived, daily life. I just really don't know what's happening to most people. It's clear my former hyperbaric doc and her daughter have a retroviral infection they are treating and it seems to be key to improving them. On the other hand, they did two years, yes two years, of IV antibiotic treatment, as well as antimalarials for babesia. I don't know all the details of what they were on, but isn't it possible that they treated all coinfections and copathogens completely, and that's one reason they're doing well on ARV's? But if I didn't know what they'd done, I wouldn't even consider that possibility. Slayadragon has posted that she is basically living a normal life. Yet on her board a few days ago she posted that washing her hands and drinking a bit of water in a botanic garden in an upscale suburb affected her so badly she had to lay down and sleep on a park bench. She also posted she is likely to go tent camping again this winter, though a stay in civilization was nice. The stay in civilization is, from what I found out by asking at one point, using an office. Not a home. Is that actually a normal life? Information is too incomplete on the internet. I get too tired to ask endless questions to really try and sort out the truth, so I can figure out what approaches might actually help me. In addition, people are so ashamed by loss of their place in the world--loss of their important work, jobs, nice lifestyle--that it seems to me that sometimes they have a need to hide the worst and highlight the best. In addition, if their approach has improved them, they sometimes almost force it down my throat, as if it were the only game in town. And I still don't really know how MUCH they've improved or what their life is really like. I was really sick in NY by my last year there. I was depressed, I had toxic mold in my apartment, and there was so much noise with schoolkids screaming under my window. It had just gotten to be too much. When I moved down to Atlanta and had dinner with my holistic doc there, he said, "I heard you were really sick but you seem like you're doing really well." I said, "I swing wildly." He said, "I can imagine." Or something like that. He got it. And that's the truth. If I get a toxic mold or toxic chemical exposure, I feel like shit. I can get really sick. My liver rebels. If I go too long without glutathione, I feel like shit. My system is obviously so overwhelmed that it has extreme reactions to inputs that other people, normal healthy people, handle without problem. That includes my partner, who doesn't react to any of the things I do. Places that seem like hell to me, are completely neutral to him. Maybe I am both healthier than I thought and sicker than I want to be or should be. MCS seems to be my main problem at this point. I feel the most affinity with EI posters on Planet Thrive and such places. I hate tent camping and it's stressful and pretty ridiculous except I really like that there are no triggers in my tent!!!! Someone on one of those MCS boards posted that they felt so good sleeping in a tent in their backyard. I get it. I really need to build a healthy home because I'll never get a lot better if I'm constantly triggered by molds and chemicals, pesticides, formaldehyde, benzene, toxins toxins toxins. One person who seems pretty clear to me in his reports is Joey. I can usually get a good sense of how he's doing. I do really appreciate that, and the fact he's tried many things has helped me not to have to experiment uselessly with those things. But I think we must really take all these internet claims with caution. On blogs, on posts, on emails. Who really tells the truth? Everybody wants to be well. Everybody wants to be important and to matter. I don't even really know when someone says they're bedridden, are they just tired but basically okay, or are they suffering horribly? I don't make many posts on this board anymore, and it's been a long long while since I started a thread, but this matter has been really bothering me. I just have to take everybody's reports with a raised eyebrow and skepticism. Or, even if the reports are a true attempt to be honest, the report is often unintentionally too vague for me to really figure out what they mean. Scales are the worst. I've never seen a scale that accurately reflects my situation. Thanks for letting me vent.