@NicHostetier
It's a godsend. I was contemplating doing exactly that, finding a local place where I could pay for a few rife sessions just to see how I would respond. Very lucky that I connected with this person. They have a heart of gold, they really want to help other patients. We are both involved in the local lyme community, that's how we connected. Even if one has the funds, it is really hard to go out on a limb and just buy an expensive machine without any idea if it will do anything or not. That is a leap of faith that is tough to do, but hey if we have exhausted conventional therapies, and are looking for other therapeutic pathways and are hurting enough then the risk might be worth stomaching.
I wish we knew more about
herxheimers and these responses. I can't guarantee that what I went through was a herx, but I'm quite confident it was based on my previous patterns. When it comes to these diseases, and the therapies, a lot of it comes down to intuition based upon whatever evidence we can gather, from which we extrapolate multiple assumptions threaded into what one hopes is informed speculation. I feel I have a handle on what's happening in my body but I'm not 100% positive. I just wish we had deeper research and understanding of all this stuff!
The other thing I was reading about
was bartonella and herxing. It's interesting because even on this there are two camps. One camp says the pathogen doesn't cause herxheimers, and this includes people I highly respect including Stephen Buhner. If one experiences herxing they tend to say that it is likely another underlying pathogen (for instance lyme) that is causing the herxing and not bart. Another camp, also including very good experts, say that bartonella CAN cause herxes, sometimes very severe. Personally I'm in the latter camp, I don't know all the biochem, but I have a strong confidence that bartonella is one of my main infections and that it is the culprit in my herxing. But it's interesting how murky so much of this stuff really is and how so much is unresolved!
It is frustrating that so many treatment avenues are so expensive. It really bothers me to think of all the patients who aren't able to access treatments. Let alone all the patients who don't receive proper dx's...
@Traveler
I'm right there with you Traveler!!! I'm thinking that even if rifing helps me a lot, that would be n=1, so I could talk about
my case/experience but I can't extrapolate and project beyond that. There is no universal thing for these diseases. It depends on each patient. Often times, especially the trickier cases require multiple therapeutic modalities and some combination that is found through trial and error. For some of those lucky enough to have access to a rife machine it proved helpful, sometimes not fully curative but helpful, for others it didn't provide much if any help (from the readings I've done). But quite a few of the doctors and researchers I've talked to say the basic concept/mechanism of rife technology and the hypothesis of how it might affect the pathogens is fundamentally sound. So at least there's that haha!
It's funny too, because if rife ends up being helpful for me I want to share my story, I want to do advocacy but don't want to kill my credibility. Rifing is a pretty poisonous term as far as I can tell, and very far outside the mainstream. I think a lot of mainstream doctors and researchers already get scared off from lyme patients because we can come across as crazy, conspiracy-laden, etc. We are already working against a dominant narrative that has painted us as that way, as deluded anti-science crazies. So my goal when I talk to people is to be as measured, grounded as possible, and properly present any of my views with the best fundamental logic and evidence that I can with the proper qualifiers. Goal is to counteract the dominant narrative. And I want to do my best to not let my emotions seep into my arguments (which can be hard, these journeys are so powerful and difficult for many of us it is hard to talk about
without getting angry, emotional, adamant, etc). As my health has improved it has become easier for me to stay grounded when I talk about
this stuff. When I was at my sickest I was an emotional wreck, trapped by symptoms and pain, angry that my whole experience might be denied or negated because it didn't fit within what the status quo had deemed possible. There's is something truly awful and kafkaeque about
that. It is deeply insulting and disrespectful...
Anyways, sorry for those tangents...
But I think there is a trick to it when it comes to talking about
rife technology, if you refer to it as EM technology, then it is easier to talk about
. It's like a workaround, more palatable phrasing, and it doesn't raise red flags like the word "rife" tends to do. For instance I went to a science conference here in Phoenix and someone was presenting on Alzheimer's and this machine they had developed to help treat the condition. It was an EM machine, basically rife technology! No one batted an eye. I wanted to yell out hey that's a rife machine you guys! I'm quite positive if the guy had called it a rife machine it would've torpedoed his presentation and credibility.
@1000Daisies
Absolutely! yeah I think it can help some patients and for others zippo. Sadly I don't think there is one universal therapy out there that we can all bank on, each case is unique and often requires a lot of trial and error. Rife might be part of the therapeutic answer for some, but I think it is pretty rare that it will prove the only answer for most patients. It's a big bet to invest in such a machine with such murkiness and lack of guarantees.
My friend from whom I'm borrowing this machine is studying to become a nurse (which I think is neat, she is very informed but also wants to help lyme patients as a professional). She says the machine has helped her, she thinks it is good adjunct therapy but for most people you will need to combo with other stuff. I think for those of us who are sicker, and who have great trouble with these diseases we need to rely on/try multiple avenues of therapy plus be pretty rigorous with the diet and lifestyle stuff (although there are always exceptions and people who manage just fine without such adjustments). Given how sick I've been I know I have to work on every aspect to regain my health, diet and lifestyle are core components to build the foundation to empower the therapies to be more effective.
I wish we had better testing (and cheaper) because I think your point about
babesia/bartonella is a good one and would love to have better data on that. I've read quite a bit of Breitschwerdt's essays and interviews and he is convinced bartonella is much more widespread and more important player in human health than currently realized. Orders of magnitude. You can call me a believer on that
