Remission - finally something to tell you <3

[Mrparadise]

I've taken abx many times. First time Zithro in 2010 or so. Almost complete remission (mild-moderate at the time) for less than a week, then symptoms crept back. Then tried Zithro again for longer - much less help but still worked to a degree until digestive side effects were too much. Then did Doxy on and off. Then a few years later Zithro again. Then TInidazole. Nothing recaptured that first experience, though.

I am very sorry to hear that! I was and still am experiencing some gastrointestinal side effects but luckily nothing so bad, that I had to stop prematurely.

I hope that you soon find something which helps you or that the research is making a huge step towards finding something which might at least put you into remission.

 

[Mrparadise]

Did you find this improved your ME and if so, by how much?

It definitely did improve my condition by a lot (lets say 70-80% but that is just a guess)! After 5-7 days I had the feeling that I was cured but when I started the attached protocol, I noticed that I was not 100% back to normal, as I was still improving. If you can tolerate 3x 300mg Clindamycin and you do not experience any noticeable improvement, the protocol will most probably not work as intended - according to Dr. Auf der Strasse, the monotherpy with clindamycin might not be enough for severe cases, or if someone has had these symptoms for a very long time.

Thanks for your comment and for reading my post!

 

[godlovesatrier]

Well you must be in remission you quoted and replies to everyone. I rarely have that energy now 🤣🤣

Must be such a nice feeling for that cloud of ME to lift neurologically at least and to feel normal.

As it happens I've not even had a test for Toxoplasma yet. Although I've had so much back to back abx Inc clindamycin it should be dead....

Is this test any good? https://medichecks.com/products/tox..._content=sag_organic&utm_campaign=sag_organic

 

[Mrparadise]

Well you must be in remission you quoted and replies to everyone. I rarely have that energy now 🤣🤣

Must be such a nice feeling for that cloud of ME to lift neurologically at least and to feel normal.

As it happens I've not even had a test for Toxoplasma yet. Although I've had so much back to back abx Inc clindamycin it should be dead....

Is this test any good? https://medichecks.com/products/tox..._content=sag_organic&utm_campaign=sag_organic

I am not going to talk about how it feels, as this does not serve any purpose and I would feel extremely sad, because most of you are still trapped - anyways, many thanks for the kind words!

Don't even think about buying this test. If you really want to test something, you would have to find a lab which measures LTT of toxoplasma gondii. I have just copied a little part of Dr. Auf der Strasse's book, which might be helpful. The translation is not mine, as I used DeepL for that purpose:

"The diagnostic problems repeatedly mentioned result from the camouflage of toxoplasma, which undergo major changes in their outer envelope during the transition from tachyzoites to bradyzoites and retract into their target cells (76, 77). Thus, our laboratory techniques are largely fooled. There are currently three main detection methods in use; another, the leukocyte transformation test (LTT), is reliable in my experience but is not yet in general use."

To my knowledge, it is really hard to find a lab which is able to perform this test. I am not even sure, if the legendary IMD-lab in Berlin is officially offering this test, as I was not able to find it myself. However, if I remember correctly, they are able to do it at the IMD-lab but you would have to personally ask Dr. Auf der Strasse about it.

I wrote him three times and twice I have gotten a really nice and kind reply from him. Just search his name and you are going to find his doctor's office in Germany.

I hope this helps and I wish you all the best!!!

 

[Shanti1]

@Mrparadise
Thank you for sharing your story with us .
On the site you linked to there is a checklist of "toxoplasmosis symptoms". PWME will have some, or even all of these. Could you share which were most prominent for you?

Interesting that toxoplasmosis is linked to increased risk for dementia, schizophrenia, and depression:
https://blogs.cornell.edu/vetblog/2... found,between Toxo infection and Alzheimer's.
https://parasitesandvectors.biomedc...at toxoplasmosis,a decreased risk of dementia.
https://www.frontiersin.org/articles/10.3389/fpsyt.2019.01012/full

 

[godlovesatrier]

Also check this out: https://pubmed.ncbi.nlm.nih.gov/336...hylatoxin Signaling in Cerebral Toxoplasmosis

While I struggle to understand all of it I think it says that it increases microglial activation. So with microglial cells already in a primed state constantly due to the infection the chemicals released by the microglial cells would swamp the brain with chemicals that aren't normally there at high levels. Therefore I'd assume @Mrparadise suffered most severely with brainfog. Or at least it was one of the worst symptoms. Basing this off a paper and subsequent talk by Michael VanElzakker.

 

[Shanti1]

@godlovesatrier I would think so too. Fulminant toxoplasmosis has muscle soreness, sweating, and visual disturbance as cardinal symptoms, so I was also curious about those.

 

[Aidan Walsh]

Thanks. I'm pretty severe now - totally housebound, sometimes bedbound when I crash. But another thing to consider. The anti-pathogen things I've taken include: zithro, doxy, albendazole, tinidazole, allicin, andrographis, oil of oregano, neem, etc.

I would think the testing is not accurate so likely this infection is missed in many, one Paper from Tropical medicine UK mentioned about 4% have this it must be higher much higher, cannot understand how Ron Davis never picked this up in patients.

The Doctor in Germany treats also negative patients with the same symptoms as B & A positives. I was going to test at medichecks but decided I will order my own Antibiotics & start them. Thanks for this info Mrparadise

 

[Aidan Walsh]

Thanks for the hint! This is definitely something to consider and I am glad that you mentioned it!

Are you now off all of these Antibiotics & when did you stop taking these & how long were you on these in total? thanks

 

[Mrparadise]

@Mrparadise
Thank you for sharing your story with us .
On the site you linked to there is a checklist of "toxoplasmosis symptoms". PWME will have some, or even all of these. Could you share which were most prominent for you?

View attachment 48719

Interesting that toxoplasmosis is linked to increased risk for dementia, schizophrenia, and depression:
https://blogs.cornell.edu/vetblog/2018/08/14/infection-with-toxoplasma-gondii-may-lead-to-alzheimers/#:~:text=A meta-analysis study found,between Toxo infection and Alzheimer's.
https://parasitesandvectors.biomedcentral.com/articles/10.1186/s13071-021-04928-7#:~:text=Sensitivity analysis revealed that toxoplasmosis,a decreased risk of dementia.
https://www.frontiersin.org/articles/10.3389/fpsyt.2019.01012/full

The most prominent symptoms were:

-Waking up, feeling like I haven't slept at all - it felt like being posisoned or like many would probably describe it "to be hit by a truck".
-PEM but it was not that bad that I had to lay still for multiple days after too much exertion. It was a bit more direct and not as delayed as many on here describe it, which means that I suffered from it for like 12 hours after the causative exertion.
-Moderate brain fog, which increased with mental stimulation of any kind.
-Morning stiffnes in my legs - suspected MS for quite some time.
-Feeling lethargic and anhedonic - nothing was vibrant anymore.
-Visual and auditory disturbances and a way lower tolerance for any kind of stimuli.
-Feeling extremely full after eating only a little amount of food (pressure in my abdomen).

 

[Mrparadise]

Also check this out: https://pubmed.ncbi.nlm.nih.gov/33613523/#:~:text=Toxoplasma Infection Induces Sustained Up-Regulation of Complement Factor,Pathway Activation and Anaphylatoxin Signaling in Cerebral Toxoplasmosis

While I struggle to understand all of it I think it says that it increases microglial activation. So with microglial cells already in a primed state constantly due to the infection the chemicals released by the microglial cells would swamp the brain with chemicals that aren't normally there at high levels. Therefore I'd assume @Mrparadise suffered most severely with brainfog. Or at least it was one of the worst symptoms. Basing this off a paper and subsequent talk by Michael VanElzakker.

I wouldn't totally agree with that but brain fog was definitely a big one, yes!

 

[Mrparadise]

@godlovesatrier I would think so too. Fulminant toxoplasmosis has muscle soreness, sweating, and visual disturbance as cardinal symptoms, so I was also curious about those.

Please do not confuse the known active form of Tox. with the described chronic version of it. Sweating has never been an issue (maybe when I contracted the parasite but I cannot really remember that). Muscle soreness was there but not to an extent where I would even think about mentioning it.

 

[Mrparadise]

I would think the testing is not accurate so likely this infection is missed in many, one Paper from Tropical medicine UK mentioned about 4% have this it must be higher much higher, cannot understand how Ron Davis never picked this up in patients.

The Doctor in Germany treats also negative patients with the same symptoms as B & A positives. I was going to test at medichecks but decided I will order my own Antibiotics & start them. Thanks for this info Mrparadise

My pleasure, I really want to help now where I can!

If you have non-domestic cats, or like me, gave your cats away for holidays, the chances are pretty high if you ask me. But even if that is not the case, there is also a decent probability that you could have contracted the parasite from undercooked food, or non-washed fruits/vegetables (this list is not conclusive).

 

[Mrparadise]

Are you now off all of these Antibiotics & when did you stop taking these & how long were you on these in total? thanks

I am still on them, just about to stop the initial treatment phase, where you take antibiotics every day. I decided to do that for 4 weeks and then start with the relapse prevention which means taking them 2-3 times a week, so basically every other day.

To be as transparent as possible I try to tell you exaxtly what I did:

I started 6 weeks ago with Clindamycin as a Monotherapy (only 2x 300mg). I took it for 10 days and noticed a pretty decent improvement after 5-6 days. Then I've read the book and contacted Dr. auf der Strasse by email. He sent me the attached protocol. I searched for a doctor to prescribe all those pills to me. 4 weeks ago I started with the protocol und 2 weeks inI felt completely in remission. I am still unsure, if I should extend the initial treatment to 8 weeks as he mentiones that some people needed to extend the initial phase (4 weeks is the minimum amount of time, which he recommends if I am not mistaken).

Just be aware that there might probably some kind of Herxheimer reacting caused by the die-off of the parasite. I am not 100% sure if that is correct but I almost stopped the treatment because I was not able to eat even small amounts of food anymore and I felt dizzy and slightly sick in general. The issue is that I cannot give you guys any advice on that as it looks like that some would need to go through this and others on here risk getting permanently worse as their bodies are too fragile (because of the chronic state of disease) to tolerate it at all. As I was mild to moderate and because it all started when I picked up my cats which were on holidays at my ex-girlfriends home (their cats are non-domestic with a 90%+ chance - if you ask me - my cats contracted the disease at this time and then shed the parasite at my litterbox, where I soon got infected as well).

Now it gets really strange, because my older cat (5 yo now) is most probably also suffering as her gait is extremely strange as she is extremely thin, weak and massively anxious to en extent where it is 100% not normal anymore. I now wanna get her (the other cat is totally fine) on clindamycin as this is also used for the active toxoplasmosis in cats but its gonna be hard to get this prescribed as it is already extremely hard for human being to convince a doctor to prescribe it to us. Doctors are risking their job and I do understand that but there is not even a good paper und chronic toxoplasmosis.. Dr. auf der Strasse wants to conduct one but he lacks approval. I try to convince the University of Zürich but who am I to do so....

Hope this helps!!

 

[Aidan Walsh]

I am still on them, just about to stop the initial treatment phase, where you take antibiotics every day. I decided to do that for 4 weeks and then start with the relapse prevention which means taking them 2-3 times a week, so basically every other day.

To be as transparent as possible I try to tell you exaxtly what I did:

I started 6 weeks ago with Clindamycin as a Monotherapy (only 2x 300mg). I took it for 10 days and noticed a pretty decent improvement after 5-6 days. Then I've read the book and contacted Dr. auf der Strasse by email. He sent me the attached protocol. I searched for a doctor to prescribe all those pills to me. 4 weeks ago I started with the protocol und 2 weeks inI felt completely in remission. I am still unsure, if I should extend the initial treatment to 8 weeks as he mentiones that some people needed to extend the initial phase (4 weeks is the minimum amount of time, which he recommends if I am not mistaken).

Just be aware that there might probably some kind of Herxheimer reacting caused by the die-off of the parasite. I am not 100% sure if that is correct but I almost stopped the treatment because I was not able to eat even small amounts of food anymore and I felt dizzy and slightly sick in general. The issue is that I cannot give you guys any advice on that as it looks like that some would need to go through this and others on here risk getting permanently worse as their bodies are too fragile (because of the chronic state of disease) to tolerate it at all. As I was mild to moderate and because it all started when I picked up my cats which were on holidays at my ex-girlfriends home (their cats are non-domestic with a 90%+ chance - if you ask me - my cats contracted the disease at this time and then shed the parasite at my litterbox, where I soon got infected as well).

Now it gets really strange, because my older cat (5 yo now) is most probably also suffering as her gait is extremely strange as she is extremely thin, weak and massively anxious to en extent where it is 100% not normal anymore. I now wanna get her (the other cat is totally fine) on clindamycin as this is also used for the active toxoplasmosis in cats but its gonna be hard to get this prescribed as it is already extremely hard for human being to convince a doctor to prescribe it to us. Doctors are risking their job and I do understand that but there is not even a good paper und chronic toxoplasmosis.. Dr. auf der Strasse wants to conduct one but he lacks approval. I try to convince the University of Zürich but who am I to do so....

Hope this helps!!

Can this Doctor prescribe from there to the UK these antibiotics its difficult to get these antibiotics here without prescriptions? I tried to purchase these from India but I need a prescription. Is there somewhere online one can get these Antibiotics? I wonder if he can do online talk with distant patients/costs involved?

Can you leave here his full details contacts, his office address, telephone, emails, secretary? thank you

 

[JES]

Clindamycin is active against a broad range of pathogens, like most antibiotics. Among those are bacteria like Staphylococcus aureus, which has been linked to certain chronic diseases. If you take clindamycin and start feeling better, how would you know what the cause was unless you get tested on beforehand with some reliable test, which doesn't seem to exist in this case.

It's basically the same problem as with Lyme disease in that there are lots of tests that show false positives or false negatives and lots of people who don't improve with any antibiotic while some do. Since most of us humans harbor tens of thousands of bacterial species, even having demonstrated you found "pathogen X" in the blood and then get better following a broad-spectrum antibiotic does not prove "pathogen X" was causative, as it could also have been "pathogen Y" causing all your symptoms, which the antibiotic also happened to be active against. Many antibiotics are also anti-inflammatory, which is one hypothesis why some people with chronic diseases notice improvement while on them, but then regress once they stop.

Anyway, forgive me for my rant and I'm happy you found something that made you much better and that you shared it with us. Those kind of recovery stories are so rare that they are always valuable. The antibiotic regimes tried for Lyme disease have not helped most of us here, but there may be some novelty to this approach as clindamycin is not an antibiotic that is typically prescribed, so it could be that it helps ME/CFS patients in let's say more than in 1% without us knowing.

 

[Aidan Walsh]

Clindamycin is active against a broad range of pathogens, like most antibiotics. Among those are bacteria like Staphylococcus aureus, which has been linked to certain chronic diseases. If you take clindamycin and start feeling better, how would you know what the cause was unless you get tested on beforehand with some reliable test, which doesn't seem to exist in this case.

It's basically the same problem as with Lyme disease in that there are lots of tests that show false positives or false negatives and lots of people who don't improve with any antibiotic while some do. Since most of us humans harbor tens of thousands of bacterial species, even having demonstrated you found "pathogen X" in the blood and then get better following a broad-spectrum antibiotic does not prove "pathogen X" was causative, as it could also have been "pathogen Y" causing all your symptoms, which the antibiotic also happened to be active against. Many antibiotics are also anti-inflammatory, which is one hypothesis why some people with chronic diseases notice improvement while on them, but then regress once they stop.

Anyway, forgive me for my rant and I'm happy you found something that made you much better and that you shared it with us. Those kind of recovery stories are so rare that they are always valuable. The antibiotic regimes tried for Lyme disease have not helped most of us here, but there may be some novelty to this approach as clindamycin is not an antibiotic that is typically prescribed, so it could be that it helps ME/CFS patients in let's say more than in 1% without us knowing.

I would think it is working on this Pathogen the Doctor involved has numerous Positive to the infection mentioned.

 

[JES]

I would think it is working on this Pathogen the Doctor involved has numerous Positive to the infection mentioned.

As I said, humans carry thousands of bacterial species, many of which can potentially be pathogenic. Unless the test is very accurate and there is a clear casual relationship established, you cannot be sure if the improvement was from bacteria A, bacteria B, or protozoa C getting targeted with these broad-spectrum antibiotics. This doctor may have specialized in looking to find toxoplasmosis, but did he test for all the other pathogens that have been established as disease-causing in his patients?

To give a concrete example, last year I had a microbiome test performed and found out I carried D. fragilis, which is another parasite. I was given antimicrobials against this. I didn't improve. If I had improved, would it have been because the antimicrobial eradicated D. Fragilis or was it something else it did get rid of? D. fragilis can be both pathogenic or non-pathogenic, so we have different pathogen variants or even the same pathogens that can cause problems in one person and not in another.

 

[hapl808]

The antibiotic regimes tried for Lyme disease have not helped most of us here, but there may be some novelty to this approach as clindamycin is not an antibiotic that is typically prescribed, so it could be that it helps ME/CFS patients in let's say more than in 1% without us knowing.

And there are many of us (and lyme people) who did improve to a degree with antibiotic use (all different kinds), but the improvement was temporary and could not be repeated. I improved on zithro and doxy, but the improvement was not sustainable even with varying dosages and synergistic treatments, and other things like tinidazole and albendazole didn't help.

It's so hard to know what's happening even when we find things that are helpful. We really have a rudimentary understanding of our biology at best, but we have fancy charts and machines and modern medicine has an overblown opinion of its own knowledge.

 

[godlovesatrier]

People might find this interesting: https://cfsremission.com/category/treatment/microfloras/decreasing-overgrowth/antibiotics/

Ken says he took antibiotics early on to slowly resolve his gut imbalance. Which for him was the core reason behind all of his ME. He lists all the antibiotics here and the effect they have on the different bacterias.

It's interesting stuff.