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It upped my energy slightly, but like everything else so far, it was in no way curative.

I wasn't exercising any more than usual when I first got ill - mine had a sudden viral start. But it makes sense that if immune dysfunction of some kind is involved, that heavy exercise could make problems more likely. Same with stress, lack of sleep, or anything else that normally throws the...

Like Sushi, I try to stop everything at the first early warnings signs. I also try to avoid anything that's not easier than "somewhat difficult" for me on a particular day. I treat my energy as a precious and limited resource, and try to avoid spending it on anything that isn't really worth...

I read an article recently about a study on misinformation. It seems that the more times people hear a theory, the more they believe it to be true (or at least, possibly true). It seems more and more credible to them every time they hear about it. The catch is that hearing about something will...

Equilibrant has so far been the only thing to make a significant and noticeable difference to my quality of life. So that's made me more open to the potential of TCM than I might have been previously. Not curative, but a definite and distinct improvement. ...Which is more than I can say for...

I worked with the Women's College Hospital a bit, though they weren't able to offer much in the way of specifics (they did seem informed and well-intentioned, though). They did connect me with an exercise physiologist who understands PEM, and I think having the doctor's report and the connection...

I'm not feeling up to writing much today (overdid it a bit yesterday on that front), but I'll do what I can. I have pretty much textbook severe ME. I've also tested positive for Bartonella infection that should have passed many years ago, and borderline for another systemic infection, so I may...

Thanks. :) To be honest, I don't think it's even actually a sparrow. Just a small, inquisitive-looking little bird. I'm such an imposter! ;)

For myself, I did mean sitting, but my situation is pretty severe, so sitting up is my special exertion. :) I get the brainfire lying down as well. I tested negative for Lupus, but it seems wise to rule out whatever you can that might be a contributing factor. I wish you luck in getting...

Yeah - I'd definitely get it checked out just in case it's something else, but for what it's worth, what you're describing sounds very, very familiar to me. I've dubbed mine "brainfire", and at its worst, it is the most unbearable thing I've ever encountered in my life. In case it's helpful...

Signed. Thanks for posting this!

I've donated again. Thanks for mentioning. This seems like such a clearly beneficial approach. I'm sure the sickest among us probably have more pronounced abnormalities than patients who are easier to get to testing, etc. I'm eager for this to get underway.

Until we can pin down more specifics with further research, I like the proposed new name (SEID). I feel like they've listened to what's important. It says "disease" rather than "syndrome", which lends an appropriate tone of significance. And it focuses on post-exertional malaise on a...

Burning in my spine, neck, and head is one of my ME symptoms, but with time and a lot of trial and error, I've been able to make the connection that it only happens when I'm overdoing it with mental activities (TV, reading, computer use, conversation, listening to music, etc.). It took me a...

I find that a specific anecdote of one of my worst moments tends to help, when I was looking at a list of items, and had to keep trying to figure out what a word was, then what it meant, then why it was relevant, then what I was doing reading it in the first place, etc. I also tend to describe...

Just as a side note, the mack truck of symptoms always hit me pretty much exactly 24 hrs following overexertion, but since starting Valcyte, it is sometimes closer to 48 hrs now. Not sure if that's significant or common, but it seemed relevant to mention.

Not every patient with ME believes that the IOM and P2P efforts are a negative thing. The community at this particular forum has a very strong slant in that direction, but not every patient shares those views. I love the idea of getting public relations firms involved, but wish dearly that...

In my unprofessional experience (just a patient who took it for a while), as I recall, Ritalin is one of those medications where if you take it every day, you may need to increase the dose eventually because your body will get accustomed to it. I took it for a while before I had my ME...

I don't have any suggestions, but I'm having issues with this as well. My testosterone and DHEA aren't elevated either. I remember hearing something about an insulin and testosterone-activity connection in women, but I can't recall the details. It was something acting like testosterone...

Donated. Thank you for sharing this.

I'm so happy it was helpful to you. Obviously I am not a medical professional, so you probably shouldn't take my suggestions too seriously, but from what patient to another in case it helps at all, based on my own experiences I would say to just take your time with it. Give your body time to...

I started with a quarter pill, and did not increase my dose until I felt more "normal" on that amount. It was usually about two weeks between dose increases, though I left it at a steady dose for longer sometimes by choice. Later on in the process, I've been able to tolerate going up by half a...

What you've described sounds actually pretty similar to the path I've ended up taking, though my doctor did not start me with LDN, and I took FOREVER to gradually increase dose of Equilibrant because even a quarter pill made me so incredibly sick (though totally worth it). I hadn't heard that...

Thanks for sharing your experiences. That's really helpful. I haven't read through all of it yet, but you mentioned the regular bloodwork you were having done when you first started the Valcyte (to make sure your body was tolerating it, I assume). Can you tell me how often you had those done...

Oops! That was just my brain typing on auto-pilot. Fixed it now. Thank you for mentioning it, though. That's important information to have correct. :)

I was hoping someone seeing one of the "expert" doctors could help pass on what they were advised (in a completely non-official, I promise not to consider your comments "medical advice" kind of way, just sharing experiences between patients). My doctor is supportive, but not an expert on these...

Off the top of my head, this is what I can think of: MCV - mildly high (consistently since illness) MCH - mildly high (consistently since illness) DHEA-S - very low for age bracket (consistently) Alk Phosphatase - low for over a year now RBC count - borderline low EBV - elevated markers (incl...

I'm not up to reading everyone's replies here at the moment, but wanted to chime in that this fits some of my experience. For me, I've learned (way too slowly) that I can keep my symptoms away if I do little enough. When I try to do things again, the symptoms reappear (and if I try to do too...

I'm glad that it helped. We can all use every little bit we can get.

@SOC - Neuro-Immune Dysfunction Syndrome would work if we wanted to call it NIDS. I would probably prefer that to needs. :)