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Posted 5/11/2023 5:11 PM (GMT 0)
i came across this the other day on another forum and thought it might be of interest to some people here.

basically infection of humans with toxoplasma gondii is very common indeed ( sero positive rates are very high in the developed world)

human are infected by the organism from infected cats - or their faeces

but it has long been assumed that as long as a person is not severely immunosuppressed ( eg organ transplant or AIDS or splenectomised) - then their immune system will deal with the infection and it will be a brief self limiting illness

at which point its expected that we will have encysted toxoplasma organisms in our tissues ( brain, organs, muscle) but our immune system is supposed to keep them in check.

however - it seems chronic toxoplasmosis in humans is a thing and there are studies showing around 4% of "CFS/ME" patients are actually suffering from it

the organism is related to Malaria and Babesia ( another protozoan piroplasm ) and the symptoms are strikingly similar to chromic babesiosis - but often with more neurological involvement as it infects the brain

a post on phoenix rising of someone who was cured after treating it - having been sick with "CFS" for 5 years
https://forums.phoenixrising.me/threads/remission-finally-something-to-tell-you-3.88323/

this German doctor has a website with information about diagnosis and treatment
on cursory inspection it seems pretty factual and pragmatic
he claims to have cured numerous people even after 20 years of mysterious illness with a alternating protocol of multiple antimalarials and antibiotics - and he is trying to get support to run proper clinical trials.

treatment is a combo of daraprim, clindamycin, coartem, and clarithromycin - in blocks of 5 days each - with a special folate supplement to prevent anaemia
treatment is several months in chronic cases

symptoms are very similar to many lyme symptoms - and are given as:
Fatigue, Muscular pains, Concentration disorder, Sweating, Dyspnoea, Listlessness, Exhaustion, Irritability, Visual disturbance, Dizziness, Depressive moods, Anxieties, Morning stiffness, Oedema, Insecure gait, impaired coordination, Pressure in the upper abdomen, Headaches, Joint aches, Swelling of lymph nodes.

Dr's website https://en.toxoplasmachronic.com/

thought it was interesting - and another possible infection to rule out - especially in those who have not responded to prior protocols
Posted 5/12/2023 2:41 AM (GMT 0)
I find this interesting for sure. I had all the toxoplasmosis symptoms bt was tested once and it was negative test. I was given clindamycin a d reacted badly to it. Clinda used to be used to treat dental Infections, babs and toxoplasmosis. My llmd thought it was interesting that I reacted so strongly to the clinda (brain fog, disoriented, depression, panic attacks, hypervigilant). My llmd didn't know if it could be babs or toxoplasmosis. Just knowing clinda is effective against these 2 Infections, I highly doubt I'd reacted to it if I did have any type of dental Infection. It was more of a herx. Also, I haven't been around cats my whole life, at least in close contact, maybe a few times. Never bitten by a cat or scratched that I can recall. I only slept with the pet cat as a kid , before I somehow became highly allergic to cat urine and cat fur. Leads me to wonder about bartonella and toxo. You can also get toxoplasmosis from Infected meat or water which is my guess . Bart I don't think is only from cats. Evidence and studies think there needs to be more evidence that bart can come from ticks. I just think if someone has toxoplasmosis or bart it doesn't have to be from cats, maybe it's from Infection via food or water? Either way it's scary. Does anyone know if the toxoplasmosis tested is sucky like Lyme, bart and babs ?
Posted 5/12/2023 10:28 AM (GMT 0)
yep - i forgot to mention in my summary that - yes its often contacted from infected meat

and so - although it can only produce infective oocysts in the gut of felines - those can infect any warm blooded animal - via the faecal oral route - including those in the human - and once infected those animals will have cysts in their meat for life

seems its a pretty common infection in food animals - like pigs and sheep - so human risk of exposure is high

it also makes you wonder if the type of immuno suppression - or immune dysregulation common in people with lyme is enough to allow dormant cycts in our tissues to reactivate and become probematc once again

the organisms other claim to fame is its ability to modify the behaviour of its host animal species
the main host species are rodents - and studies show that rodents infected with toxo display a marked lack of fear of felines - and even curiosity towards them - compared to non infected rodents.
so the theory is that the parasite is modifying risk taking behaviour by releasing chemicals in the rodents brains

even more curious is the human research on toxo infection and risk taking.
studies have found that human risk tolerance or appetite s associated with sero-positivty for toxo
with self made millionaires having much higher sero-positivity rates than non millionaires

its not just rodent and human either - a recent study in wolves also found leaders of the pack were many times more likely to be seropositive for toxo and younger animals were much more likely t leave their pack if they had toxo antibodies ( a high risk behaviour for a wolf )

ref testing - the german doctor uses LTT tests (lymphocyte transformation tests ) rather than serology - so i presume he has good reason for that

i have also read that the cyst form in tissues forms human proteins around itself as protection from the immune system - so it would make sense that antibodies would wane in that setting.

however in lyme and co-infections we dont really know what's happening with the immune system - though its clear its normal functioning is disrupted - and there is evidence that normal antibody production is disturbed - so it may be more a a case that all serologic tests are of lesser diagnostic value once lyme and co are in the picture.

his symptoms checklist has a column for test result and symptoms both before treatment and after a course of antibiotics - suggesting that a change in LTT is expected

overall its a fascinating organism - and just goes to show how sophisticated these piroplasms are compared to most simpler microbes - in their ability to manipulate the host immune system and even behaviour
Posted 5/12/2023 4:02 PM (GMT 0)
my light sensitivity and ocular headaches went away after tx . i like robert sapolksy explanations here is one of his interviews, his lectures are amazing as well.

https://youtu.be/m3x3TMdkGdQ
Posted 5/12/2023 5:03 PM (GMT 0)
I wonder how one knows this is the ONLY infection in play, and that it’s what’s responding to treatment for symptom abatement?
Posted 5/12/2023 5:53 PM (GMT 0)

bluelyme said...
my light sensitivity and ocular headaches went away after tx . i like robert sapolksy explanations here is one of his interviews, his lectures are amazing as well.

https://youtu.be/m3x3TMdkGdQ

yep - he's an interesting guy
Posted 5/12/2023 6:00 PM (GMT 0)

loski01 said...
I wonder how one knows this is the ONLY infection in play, and that it’s what’s responding to treatment for symptom abatement?

yep - there is so much overlap its going to be tricky

the guy on PR who posted - recovered completely after being sick for 5 years - recovered after only clindamycin for i think 4 weeks - but that is thought to be atypical - many need to cycle several drugs

and clindamycin is very broad in action - so he could have had toxoplasmosis - or something else - or toxo plus something else - and it doesn't really tell us much

there is some suggestion that the LTT test may actually go up in value after a treatment trial with Clindamycin - similar to people with bart turning sero-positive during treatment with abx
so that might confirm a person is dealing with toxo - but not really give any clarity as to whether its only toxo - or toxo plus others

it also strikes me that the treatment is remarkably similar to Babesia - as are the symptoms ( which is not so surprising since they are related organisms ) but given the high rates of sero-positivity in the population
it could be that a good number of people who think they have babesia and then seem to respond to Babesia treatment could in fact have toxoplasmosis
Posted 5/12/2023 9:13 PM (GMT 0)
Have you seen Ken’s work @ https://cfsremission.com/? I feel like we might’ve mentioned it in the past..

He has some posts theorizing a microbiome change being a main reason why certain people respond to certain anti biotics and others don’t. - as most of his work centers around the gut microbiome connection to health conditions. I’ve long pondered trying the mutaflor that brought him remission..
Posted 5/12/2023 10:38 PM (GMT 0)
Dr J uses Clindamycin in his protocols.
If I’m not mistaken - he puts it in the protocol (Bartonella/Persisters) after the Babesia protocol is finished - to help keep Babesia from returning .
Posted 5/13/2023 9:55 AM (GMT 0)
yep- i am familiar with Ken's theories - i have had some correspondence with him

but in my opinion he is barking up the wrong tree

or rather - what he sees as cause (dysregulation of the microbiome) is actually in my opinion a downstream effect of something else

as i recall - Ken says he has reached remission 3 times - mainly with the use of systemic antibiotics ( ie not those that act only in the gut for dysbiosis - eg Rifaximin )

he also used v large doses of fibrinolytic agents - like bromelain

there are numerous studies showing links between fatiguing illnesses and infection, and fatiguing illnesses and various issues in the human clotting system.

so i think some form of infection triggered disorder actually fits better

many of these infections can be relapsing and remitting in nature - often due to life events - which is exactly what Ken describes in his own case - like lyme, bartonella, rickettsia, chlamydia etc etc

the other problem is with the quality of the data that he is attempting to use to develop his theories of which gut bacteria are driving symptoms.

i have personal experience of two of the leading microbiome testing companies providing results that are not only different - but diametrically opposed to each other - at every level - genus, phylum etc
( literally one test saying zero and the other saying overgrowth - of the same bacteria genus )
a result which simply cannot occur if the technology is reliable and repeatable

so - although i am sure there are some discernible characteristics in the patterns of the microbiomes in chronically ill people - the technology doesn't seem to be there yet to give us good data on what exactly is going on there -
and i suspect it is in any case a downstream effect of another disease process ( with perhaps some degree of feedback loop - eg inflammation from the gut dysbiosis can be expected to feed into more systemic inflammation from whatever disease is ultimately driving it l - and contributing to differing opinions on cause or effect).
Posted 5/13/2023 4:16 PM (GMT 0)

Garzie said...
yep- i am familiar with Ken's theories - i have had some correspondence with him

but in my opinion he is barking up the wrong tree

or rather - what he sees as cause (dysregulation of the microbiome) is actually in my opinion a downstream effect of something else

as i recall - Ken says he has reached remission 3 times - mainly with the use of systemic antibiotics ( ie not those that act only in the gut for dysbiosis - eg Rifaximin )

he also used v large doses of fibrinolytic agents - like bromelain

there are numerous studies showing links between fatiguing illnesses and infection, and fatiguing illnesses and various issues in the human clotting system.

so i think some form of infection triggered disorder actually fits better

many of these infections can be relapsing and remitting in nature - often due to life events - which is exactly what Ken describes in his own case - like lyme, bartonella, rickettsia, chlamydia etc etc

the other problem is with the quality of the data that he is attempting to use to develop his theories of which gut bacteria are driving symptoms.

i have personal experience of two of the leading microbiome testing companies providing results that are not only different - but diametrically opposed to each other - at every level - genus, phylum etc
( literally one test saying zero and the other saying overgrowth - of the same bacteria genus )
a result which simply cannot occur if the technology is reliable and repeatable

so - although i am sure there are some discernible characteristics in the patterns of the microbiomes in chronically ill people - the technology doesn't seem to be there yet to give us good data on what exactly is going on there -
and i suspect it is in any case a downstream effect of another disease process ( with perhaps some degree of feedback loop - eg inflammation from the gut dysbiosis can be expected to feed into more systemic inflammation from whatever disease is ultimately driving it l - and contributing to differing opinions on cause or effect).

In his 2012 3rd relapse he details the following “I went to Dr. Kim Iller, who was familiar with Jadin’s work and willing to follow her protocol. She was working Dr. Marty Ross at that time. I tested positive for Chronic Lyme. As with the 2000 onset, I proceeded to read over 3000 pub med articles to make sure that there was not a better (more effective) treatment available. I discovered some serious studies on gut bacteria and CFS and with Dr.Iller’s consent, went on to Mutaflor. A probiotic, Mutaflor caused the worst herx that I ever had in my life… but also rapid decrease of symptoms. It does not just kick-ass, it kicks-head; the worst headaches that I have ever had in my life…. Mutaflor is non-prescription in Canada and thus was easy to obtain crossing the border. Recovery time was just 6 months until I was authorized to return to work.“

He does speak after that suggesting a few herbs he also found useful as a natural anti biotic, but it appears his final remission he credits to mutaflor - and it seems no use of abx for that like mentioned in his earlier 2 experience. Nor the use of enzymes.

Post Edited (loski01) : 5/13/2023 8:19:22 AM (GMT-8)

Posted 5/13/2023 4:39 PM (GMT 0)
interesting - but again - somewhat mixed protocol and an N=1 example so v hard to draw any useful conclusions

for what its worth - as another - N=1 anecdote ( actually more like N=2 as my fiance and i both tried Mutaflor with v similar results)

its available from Germany without prescription - but was a bit pricey to keep taking - so we followed Dr Sarah Myhill's approach ( a well known UK CFS specialist Doctor) who advises making your own high dose culture of mutaflor - by fermenting it in sterilised( so you only grow mutaflor) goats milk for a few days to make a live probiotic mutaflor yogurt and consuming that in much higher quantities than is feasible with mutaflor in its original purchased suspension form

this worked and even tasted ok - we both had pretty strong herx like symptoms from even a teaspoon full of the "yogurt" a couple of times a day

i think we kept it up for a couple of weeks - afterwards we possibly had some minor improvement in gut symptoms for both of us - after the gut upset from the 2 weeks of probiotics settled down that is

no discernible improvement in overall lyme / bart symptoms for either of us at that time though.

herx like reactiosn to probiotics was not unusual for us
in fact anything that we took that supplied more live bacteria ( probiotics and fermented foods), fed the existing bacteria ( prebiotics) or killed gut bacteria (anti-microbials ) would all cause us herx like symptoms for both of us

my interpretation of this differs from Ken's - it makes more sense to me that people with lyme / bart etc just have messed up gut bacteria due to all the inflammation in their bodies and particularly thier guts, changing the landscape inside our guts where these bacteria live ( plenty of published evidence for this)

Bart in particular is known to cause disturbances in the gut lining in every section of the gut from stomach ( gastritis ) to colon (colitis)
this almost certainly leads to leaky gut - which leads to an upset and dysregulated immune system - together with auto-immunity.

in that context - if you add more bacteria or kill existing ones - fragments will get past the leaky gut membrane into the systemic circulation and cause herx like symptoms.

so, while i don't think the gut problems are driving the disease - i do think you can take a good deal of load off the host immune system - by managing the gut reactivity / disturbance issue.

for instance my partner recovered 90% from lyme and bart after 5 years of being v ill - by going extremely strict Keto ( meat, fish, salad leaves, olives - nothing else ) plus basic buhner herbs - plus 2 short courses of clarithromycin (less than 10 days each)

i think lyme is a spectrum -
-some will not get sick at all - despite being infected
-some will get sick - but get better anyway due to their immune system fighting it off
-some will get better on their own - but only after many lifestyle changes
-some will need long courses of antibiotics

i think she was very lucky - but unlike me - her sleep was not affected much - eg she could sleep 9 hrs throughout her illness - so that must have helped also

Ken may just have been someone similar ....
Posted 5/13/2023 8:13 PM (GMT 0)
Yeah I mean there’s so many different ways of looking at it, and two people could need two completely different approaches.

I do think it brings more backing when you look at remission stories from stool transplants, and how in CDR suramin trials the micro biome corrected in Autism patients for the duration of the symptom improvement seen in the trial. So that’s like a chicken or the egg kinda thing..

On a side note last I checked there was a Canadian supplier for mutaflor that will also ship to the US. It is on the pricier end for a probiotic though.
Posted 5/13/2023 10:06 PM (GMT 0)
so many things are connected to the microbiome now.

Parkinson's is now demonstrated to be caused by sulphur fixing bacteria in the gut that make compounds that are transmitted from the gut to the brain where they accumulate

some autism cases - and many mental health disorders are mediated by effects in the gut - via the gut / brain axis - and can be treated by addressing the gut.

all auto-immune disease is now known to involve leaky gut in its aetiology

the list goes on

and i think you can defo give your body less load to have to carry by addressing your gut / diet etc - within reason this can help your immune system deal with infections to some degree

i just don't think its enough on its own to treat infections for most of us - more of a helping hand - like good sleep.

to help put my remarks in context -
i was into functional medicine before getting ill - which is all about gut health - and initially, before getting a lyme diagnosis i thought my partner and i were dealing with some kind of gut issue or microbiome imbalance, so when we got ill i went on a 2 year deep-dive down the microbiome rabbit hole -
i read a huge amount - we both did loads of expensive tests - tried several gut health diets - and dysbiosis treatments - tried most probiotics - converted to keto etc etc - some things helped a bit.

but the keto diet is the only thing i have really found worth keeping - in terms of benefits to my health.
so thats where my perspective is coming from

for some - like my ex, diet, lifestyle - some buhner herbs and a few short course of abx were enough to get her back on track - and i think the Keto diet was a big one for her - so there will be others that this will apply for also - but i think it will be relatively rare once lyme and co have a hold.

i don't think mutaflor is risky though - so by all means give it a whirl

buy the minimum amount and make your own probiotic - i think myhill has a page on growing it on her website

https://www.drmyhill.co.uk/wiki/growing_mutaflor
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