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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Toxoplasmosis anyone?

Discussion in 'General Treatment' started by CBS, Dec 18, 2009.

  1. CBS

    CBS Senior Member

    Western US

    I am starting this thread on toxoplasmosis in the "General Treatment Section" because there does not appear to be a section on "infections," "co-infections," etc. I guess this could go under symptoms but what I want to talk about are verified (and suspected) cases of 'Toxo' infection.

    Toxo infection is not uncommon but mine went out of control. Not sure why. Most likely immune suppression.

    I don't know if it is reasonable to start a new section on infections but it doesn't seem crazy to do so if we have sections on all sorts of treatments (for what?). Cort?

    So, back to Toxoplasmosis, the disease state caused by the parasite, toxoplasma gondii. This was the little bugger that supposedly kickoff the last 16 glorious years of CFS for me. Here's a link to the wikipedia entry on 'Toxo.'

    And for those of you who find interesting and thoughtful scientists really interesting, here is a link to a fantastic discussion with Dr. Robert Sapolski (Stanford - Go Trees!) on parasitic (toxo) control of the hosts behavior and neurobiology: http://www.edge.org/3rd_culture/sapolsky09/sapolsky09_index.html (also author of Why Zebras Don't Get Ulcers ) .

    There is another video which has most of the same info but has pictures and is a bit easier for the not scientific community. I'll keep looking for it.

    For those of you who are interested in all things amygdala, a lot of this is about toxo and it's fondness for the amygdala.

    That said, I am hoping that we can keep this conversation focus on Toxo (and when appropriate, how Toxo relates to inhibition - the amygdala).

    And if you watch the video, yes, I do find myself oddly attracted to cats!

    I'll post my experience soon.
  2. bettine


    Utrecht (Netherlands)
    Hi Shane,

    when I first got ill with ME, I was referred to an infectious disease doctor, because in my blood I had very strange toxoplasmosis values. I don't know exactly what was wrong. But apparently they drew blood several times over a couple of weeks and they didn't understand what was going on. THey couldn't decide whether I had an active toxoplasmosis infection or not.

    I read the links you supplied. I have never liked cats and still don't :), but I used to live in a house where cats lived for several years ...

    Interesting thread, this.

    Best regards,
  3. anne_likes_red

    anne_likes_red Senior Member

    Oh yes....absolutely!

    And I just this minute sent you a PM about it Shane...hadn't seen this thread then.

    I have congenital toxoplasmosis - a long history with it. A flare of apparently long dormant Toxo as an adolescent lead immediately to my ME/CFS.

    If you message me back, I'll copy my original PM into this thread - for some reason I can't see my "sent items".

  4. Kati

    Kati Patient in training

    Shane, I have not been tested for toxo but really soon will be tested for psittacosis, which is a disease carried by parrots. Since I have 2 including one that came to me 2 years ago sick with a sinus infection requiring extensive treatment, the endocrinologist thought it would be a good idea to get it tested.
  5. CBS

    CBS Senior Member

    Western US
    Toxo tales


    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.
  6. anne_likes_red

    anne_likes_red Senior Member

    I've expanded on my message to Shane..

    ..here to give my history of toxoplasmosis.

    My mother contracted toxo during pregnancy and lost my twin at 5 months gestation. (These were the days before ultrasound scans, she was told she'd lost "the baby" and was delighted a month later to discover she was still pregnant.)

    So, I was born with congenital toxoplasmosis and as a result of the infection I'd lost the central vision in one eye and had small lesions (scarring from previous toxoplasmosis actvity) on the retina of the other eye.

    At 16 I developed a toxo flare on the optic nerve of my good eye and I was hospitalised for treatment.
    In a few weeks (with intravenous antibiotics, and steroids) my eyesight was back to how it had been previously.
    ...But, the bad news was...I had suddenly "come down with" CFS/ME.
    That was 25 years ago last month.

    I had regular toxo flare ups every year or two for a further 11 years. Steroid and antibiotic treatment surpressed the eye symptoms. (I never had any flu-like symptoms that I was aware of.)
    I really don't know if there's much significance to this but in 1997 I was treated with classical homeopathy for Toxoplasmosis and my titre has remained the same (@550) ever since.

    Congenital toxoplasmosis seems to flare in adolescence and, so I was told at the time, it typically quietens again before age 30...so whether the homeopathy helped or simply my advancing age I don't know. I'm grateful to have never needed a single course of antibiotics since...or any hospital visits.

    I saw a specialist when pregnant with my first child who told me the form of Toxoplasmosis I have wasn't a threat to my own children.

    Shane, I'll watch that video now :)
  7. CBS

    CBS Senior Member

    Western US
    Toxo and testing

    Hi Athene,

    I'm glad to hear that your son is showing no signs or symptoms. As for your tests, I get the feeling that it is not uncommon to have inconsistent and somewhat unreliable test results for this bug (as well as for some of the other co-infections we get). The more I read the more I am struck by how often active infections just simply don't show up using some of the standard tests. It seems like CFS docs really need to know where and how to look but when they do look in the right places, the findings are much more revealing and consistent.

    I plan on discussing this with Dr. Montoya during my visit with him in February.

  8. bettine


    Utrecht (Netherlands)
    If I read it well (and very vague in head right now) a couple of things strike me: first of all the inconclusive tests for toxo. I read a post where you were asked to come back because they thought they mixed you up. This kind of confusion happened to me when I started to be ill.

    Second: the way the illness (ME) started: I had a bad flu, and over the months that followed it, slowly I sank into a state where I had something very wrong with my muscles, I couldn't stand on my feet, only on the sides for very short periods. Walking also on the sides of my feet. Very foggy, very tired, like Epstein Barr. Strange cramps, where suddenly my entire back muscles would cramp up. Very scary. My feet cramped a lot. Nobody was allowed to touch me even slightly because that was unbearable for some reason, it was like all my muscles were screwed too tightly. I am not sure I have heard these particular symptoms from a lot of people with ME?

    Slowly the brain problems crept in over the months, the not being able to remember, concentration problems, fine motor function.

    After about a year, I slowly recovered to a point where I could walk very carefully, and got better generally, though I continue to function on an extremely low level.

    Also I remember from early publications on ME, around the beginning of the 90's, it was often mentioned that people with ME had 'strange' test results for toxoplasmosis. So I don't know whether the cause is/was ME and ME is accompanied by confusing toxoplasmosis tests, or whether toxomplasmosis was the thing that initiated everything.

    Sorry, I cannot be more clear at the moment, my brain is very muddled at the moment and writing in English doesn't make it easier :(. What you all write is very interesting, though.
  9. Paris01

    Paris01 Guest

    I bumped into this thread while I was searching for ways how to minimize CFS, and I'm too glad to have read it. Congenital toxoplasmosis is not common to where I come from, and I guess I should start informing future moms about this. It looks like a very serious matter if it can be passed on to your child.
  10. Timaca

    Timaca Senior Member

    If you are interested in testing for toxo, there is a very good lab in CA: http://www.pamf.org/serology/

    They do not take questions from patients, but will speak with doctors.

    Best, Timaca
  11. Rosemary

    Rosemary Senior Member

    Hi CBS....Thanks for posting this interesting information about toxoplasmosis
    I therefore thought that it would be interesting to add this review by Prandota who states that autism may be due to cerebral toxoplasmosis


    Autism spectrum disorders may be due to cerebral toxoplasmosis associated with chronic neuroinflammation causing persistent hypercytokinemia that resulted in an increased lipid peroxidation, oxidative stress, and depressed metabolism of endogenous and exogenous substances

    Joseph Prandota, a,

    aDepartment of Social Pediatrics, Faculty of Health Sciences, University Medical School, 5 Bartla Street, 51-618 Wroclaw, Poland

    Received 2 September 2009; accepted 15 September 2009. Available online 5 November 2009.

    Worldwide, approximately 2 billion people are chronically infected with Toxoplasma gondii with largely yet unknown consequences. Patients with autism spectrum disorders (ASD) similarly as mice with chronic toxoplasmosis have persistent neuroinflammation, hypercytokinemia with hypermetabolism associated with enhanced lipid peroxidation, and extreme changes in the weight resulting in obesity or wasting. Data presented in this review suggest that environmental triggering factors such as pregnancy, viral/bacterial infections, vaccinations, medications, and other substances caused reactivation of latent cerebral toxoplasmosis because of changes in intensity of latent central nervous system T. gondii infection/inflammation and finally resulted in development of ASD. Examples of such environmental factors together with their respective biomarker abnormalities are: pregnancy (increased NO, IL-1, TNF-, IL-6, IL-10, prolactin; decreased IFN-, IL-12), neuroborreliosis (increased IL-1, sIL-1R2, TNF-, IFN-, IL-6, IL-10, IL-12, IL-18, transforming growth factor-1 (TGF-1)), viral infections (increased IL-1, IL-6, IL-8, TNF-, IFN-//, TGF-1), thimerosal (increased IL-5, IL-13; decreased IFN-, TNF-, IL-6, IL-12p70, NOS), and valproic acid (increased NO, reactive oxygen species; decreased TNF-, IL-6, IFN-). The imbalances in pro- and antiinflammatory processes could markedly hinder host defense mechanisms important for immune control of the parasite, such as the production of NO, cytokines, and reactive oxygen/nitrogen species, tryptophan degradation by indoleamine 2,3-dioxygenase and/or tryptophan 2,3-dioxygenase, limitation of the availability of intracellular iron to T. gondii, and the mechanisms mediated by an IFN- responsive gene family. These fluctuations could result in a recurrent profuse multiplication of T. gondii in the brain associated with persistent neuroinflammation, chronic overproduction of pro- and antiinflammatory cytokines, and NO causing increased oxidative stress, and significantly depressed activity of several enzymes including cytochrome P450 monooxygenase family responsible for metabolism of physiological substrates and xenobiotics, such as steroids, fatty acids, prostaglandins, drugs, pollutants, and carcinogens, finally leading to development of ASD. This reasoning may be supported by such abnormal metabolic events as: (1) patients with ASD have significantly decreased melatonin levels caused by marked deficit in acetylserotonin methyltransferase activity, possibly resulting from maternal and/or fetal/postnatal overproduction of NO, characteristic for this clinical entity; (2) thimerosal inhibited both insulin-like growth factor-1- and dopamine-stimulated methylation reactions, and depressed methionine synthase activity, the metabolic events important for promoting normal neurodevelopment; (3) valproic acid, a strong histone deacetylase inhibitor, have potent anti-T. gondii activity. Thus, patients with ASD should be tested for T. gondii infection.

    Keywords: Autistic spectrum disorders; Cerebral toxoplasmosis; Immune irregularities; Hypercytokinemia; Nitric oxide; Oxidative stress; Hypermetabolic state; Depressed enzyme activities

    Article Outline continued @

    I'm also interested in the amygdala and you mention toxo and it's fondness for the amygdala which is also very interesting because the amygdala in toddlers with autism is 13 percent larger than unaffected kids


    CNN) -- The size of a specific part of the brain may help experts pinpoint when autism could first develop, University of North Carolina researchers report.

    The amygdala helps individuals process faces and emotions.
    Using MRI brain scans, researchers found that the area of the brain called the amygdala was, on average, 13 percent larger in young children with autism, compared with control group of children without autism. In the study, published in the latest Archives of General Psychiatry, researchers scanned 50 toddlers with autism and 33 children without autism at age 2 and again at age 4. The study adjusted for age, sex and IQ.

    "We believe that children with autism have normal-sized brains at birth but at some point, in the latter part of the first year of life, it [the amygdala] begins to grow in kids with autism. And this study gives us insight inside the underlying brain mechanism so we can design more rational interventions," said lead study author Dr. Joseph Piven.

    "Many studies have observed the brain grows too big in kids with autism, but this study finds that by age 2, the amygdala is already bigger and stops growing," said Kosofsky. "So it tells us the critical difference has already developed. It now poses the question: Are children born with autism or does it develop in the first two years of life?"
  12. bel canto

    bel canto Senior Member

    Dr. Sapolsky has another book called "The Primate's Memoir" about his years of living in Africa with baboons. I highly recommend it!
  13. Mala


    I think this thread is very interesting. AIDS-patients often has a lot of problems with toxoplasmosis. A normal healthy person would not have a problem with it. But persons with compromised immunesystems, like we have, could possibly have problems with it. Has anyone more tested for this? Any catlovers out there? Finding a coinfection like this could be the answer for a lot of mysteries in ME. When one read about the symptoms of this disease one goes: aha. But that itself is not unusual. The link to autism is also very interesting.
  14. leaves

    leaves Senior Member

    anyone ever tried treating this?
  15. bedman


    One doc tested me for toxo because I asked him for it. It came back negative. So my problem must be other infection(s).
  16. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Interesting thread due to me having both ASD and I do test postive to past infection of toxoplasmosis (Ive only ever been tested for it once and it was inactive at the time). Im a cat lover and hand raised wild kittens etc so that's probably how I originally got toxo.

    As far as Im aware.. toxo is something which lays dormant in the brain and can reactive at any time if ones immune system is down.
  17. Paul Doyon

    Paul Doyon

    Tajimi-shi, Gifu, Japan
    Parasite Takes Over Brain After Exposure to Electromagnetic Radiation Weakens Immune System

    From Dr. Robert Becker's The Body Electric

    Subliminal Stress and Brain Parasite

    ...we came upon a frightening Russian report. Yuri Klolodov had administered steady magnetic fields of 100 and 200 gauss to rabbits and found areas of cell death in their brains during autopsy. Although his fields were ten times as strong as ours, we stopped all human experiments immediately.
    Friedman decided to duplicate Kholodov's experiment with a more detailed analysis of brain tissue. He made the slides and sent them to an expert on rabbit brain diseases, but coded them so no one knew which were which until later.
    The report showed that all the animals had been infected with a brain parasite that was peculiar to rabbits and common throughout the world. However, in half the animals the protozoa had been under control by the immune system, whereas in the other half they'd routed the defenders and destroyed parts of the brain. The expert suggested that we must have done something to undermine resistance of the rabbits in the experimental group. The code confirmed that the most of the brain damage had occurred in animals subjected to the magnetic fields. Later, Friedman did biochemical tests on another series of rabbits and found that the fields were causing a generalized stress reaction marked by large amounts of cortisone in the bloodstream. This is the response called forth by a prolonged stress, like a disease, that isn't an immediate threat to life, as opposed to the fight-or-flight response generated by adrenaline.

    Asklipia and merylg like this.
  18. SickOfSickness

    SickOfSickness Senior Member

    For anyone too tired to read, Toxo can be gotten from eating undercooked meat or from leeches.

    I wonder if it's possible to have a negative lab result and have a latent infection? Then it flares up later but nobody thinks it's Toxo because of your neg lab?

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