Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
My understanding is that you can't treat the cysts because they are a latent form of the disease. The protozoa have to be active for the drugs to reach them in high enough concentations to kill them.
Sapolsky is an interesting guy, very verbally convincing, but he is wrong about some things. I saw a video of one of class lectures and picked up on a couple of errors. Nonetheless, I'd like to read some of his work.Toxo tales
Bettine,
Cats are definitely a key component of the toxo life cycle (I had two when I first got sick). I take it you watched the Sapolsky video. I've been a huge fan of his for decades (long story) and now he's consulting with the Toxo lab that Dr. Montoya runs (they are both at Stanford). I don't know how long toxoplasma gondii can survive but I suspect that it is quite a long time.
My toxo serology was definitely unusual as well (see below).
I replied to your PM. Please feel free to post your PM and my response. I may put some of my response below as I share my experience.
My introduction to Sapolsky was at a Society of Behavior Medicine conference in SF ('92 or '93 - I used to study behavioral and sociological risk factors for heart disease). My mentor at the time was one of the authors of the whole "Type A behavior = Heart Disease" concept and I got to hang out with some well respected folks.
We were waiting for the Keynote speaker (I had heard of Sapolsky but not much - he was a young professor at Stanford and spent most of his time living in the Serengeti sneaking up on baboons with a blow dart so that he could check their lipids etc.). This guy walks in wearing jeans, a t-shirt and with hair going everywhere. I seriously thought he was a homeless person who had wondered into the conference. Then he gets up on stage and gave the most incredibly thoughtful talk I'd heard (and I had heard a few great lectures at Stanford). This guy is just interesting and thoughtful and he's now studying what may be a part of the problem for a sub-group of us. How cool is that? And while I don't know him personally, I don't get the sense that he's the least bit creepy.
I too have issues with IgE levels and very strong histomine responses.
My Story:
In 1994 I was very fit and active. I was working long hours but loving all the very cool things I was working on. On April, 10 came down with a SEVERE rash under both arms. It was unbelievably painful and I was a bit tired (but hey, I was working too much and my immune system was doing somehthing). A week later I went out on a bike ride (60 miles - not unusual at all for me at the time) and when I came home I still had on my shorts (yes- those shorts!) when I leaned against the bathroom counter. A huge lymph node hit the counter before I did.
Some of the work that I was doing was at Kaiser South Bay (which is where I was insured) and I called a friend who saw me the next day. He was concerned but it wasn't clear what was going on. He drew blood, said to keep in touch, and let him know if anything changed. We set an appointment for a week later. As I drove home from that visit I started feeling like I was coming down with the flu.
Living alone at the time I decided that if I was getting sick I had better stop in the store on the way home and pick up some soup, Sprite, crackers etc. I entered the store but within minutes I had excruciating pain in one knee. It was intense enough that I wasn't sure that I could make it out of the store let alone continue shopping. I set down my basket, made it out to the car and went straight home. That night my fever hit 104 F and the next morning I was back at the hospital. There were lots of signs of infection but no clear pathogen. It took a week of so for my fever to come down.
My lymph node was biopsied and it showed clear signs of a toxoplasmosis infection. It is rare that toxo is not self limiting or even significantly symptomatic. I was told that I had an especially bad case and that it would be a few months before I was feeling better.
Several months later and still feeling quite ill, I was referred to Stanford's infectious disease department. Dr. Montoya was assistant director of Stanford's Toxoplasmosis Lab (he's now director of the lab - arguably one of the best in the world).
They drew my blood. Two weeks later they called back and apologized for having mixed up my sample with another patient's (one that was serologically negative for toxo). They had never made that mistake and asked that if I could come back in to have more blood drawn, they would walk the second sample through by hand.
Two weeks later I got another call. "Please come in." No toxo antibodies what so ever and they had used every test in the lab, but there on the slides from my node was toxo (the markers for it), thumbing its nose at everyone. They had never had a case with a node that was so clearly positive for toxo and with blood that showed not antibodies at all (where was my immune response?).
Dr. Montoya is convinced (and it is clear to me) that a toxo infection was the infection that started my CFS.
I now have a number of other viral co-infections that we are treating for. I'm also dealing with viral encephalopathy and lots of neural issues. I find the toxo infection especially interesting as in the past 12 months I developed Diabetes Insipidus, which is quite rare. Toxo is one of the few known infectious causes of DI.
From my vantage point, toxo appears to be one of a long list of infections that can precipitate CFS. Also, for what it is worth, in addition to the dangers of toxo with pregancy, toxo is a real concern for HIV patients as a relatively common and dangerous co-infection.
Dr. Montoya directs this lab.
