Remission - finally something to tell you <3

[Mrparadise]

Dear members of PR

I made a promise to myself that I am going to inform you guys, if I should find something that helps me. I am probably just one of the few very lucky ones, but I might be wrong about that.

To make it short, for all of you who cannot tolerate long posts:

It was Toxoplasmosis which made me so sick that I was experiencing mild to moderate CFS-symptoms for almost 5 years. I am definitely free of all the debilitating symptoms since round about 3 weeks.

Key findings:

-Toxoplasmosis is not only dangerous for either pregnant or immunocompromised human beings!
-Especially its chronic state might have flown under the radar of doctors and medical researchers around the globe.
-IgM was always negative and it is NOT an indicator of chronic toxoplasmosis at all.
-Opt for LTT but maybe just take the antibiotic Clindamycin (2-3x 300mg) for 10 days and see if you improve - DON'T TRY THIS IF YOU ARE SEVERELY OR VERY SEVERELY AFFECTED!! YOU PROBABLY HAVE TO START WITH A WAY LOWER DOSAGE!!
-Even if Clindamycin does not improve your condition, there is still hope.
-For the long term sufferers among us, there is a protocol where you alternate between effective antibiotics (Azithromycin, Clarithromycin, Clindamycin Sulfamethoxazole-Trimethoprim - this is not a final list but the ones I used). The protocol is attached to this post and it has been released by Dr. Uwe Auf der Strasse (a German doctor and a hero!)
-The goal besides taking antibiotics is to starve the parasite of folate, which is achieved by taking Pyrimethamine 25mg 1-2 times a day.
-To prevent anemia, you should take folate as a supplement, BUT THERE IS ONLY ONE FORM WHICH CAN BE USED BY OUR ORGANISM, BUT NOT BY THE PARASITE - it's called Calciumfolinate (either take 6.25mg every day or 15mg every second day).
-The "double" antibiotic mentioned above (Sulfamethoxazole-Trimethoprim) itself is a folate antagonist - or at least one part of it is.
-Please at least check your folate levels and your kidney parameters from time to time, if you should want to try the protocol, where you alternate between three effective antibiotics (5 days each - see attached protocol).
-Toxoplasmosis cannot be completely eradicated but the goal is to reduce the load on your immune system to a point where it can handle the parasite on its own.
-I do not have an offical immune defect, but I've always had borderline levels of IgA (0.6-0.8), which could potentially explain my case.
-As Toxoplasmosis cannot build any resistance against antibiotics, there is hope that even if your immune system shouldn't be capable of fighting the parasite on its own, you could potentially take those medications for an extended period of time.
-Toxoplasmosis is able to adapt to a specific antibiotic (not by building resistance), but almost never before day 6 - this is why you would want to take an effective antibiotic for 5 days and then switch it out for another.
-Clindamycin is (kind of) effective as a monotheraphy (there is a study on that matter).
-You should at least take the protocol for 4 weeks, followed by 1-2 more months of relapse prevention (staring after the 30 days visible on the added protocol of Dr. Auf der Strasse).
-I am now on week 4 and nearly done with the initial protocol. After that, I am going to take the antibiotics on 3 days a week for 1 month and then for 2 days a week for antoher month.
-Consider the use of a PPI (preferrably Pantoprazol) as especially Clindamycin is sometimes causing a pill-induced peptic ulcer and/or an esophagitis - I am not a medical professional myself and this is just something I wanted to add in order to protect you from getting side effects.

I am convinced that I forgot something, but there is a book, a website and protocol from Dr. Uwe Auf der Strasse, which I am going to add here. Unfortunately the book and the protocol are only available in German at this very moment and therefore I tried my best in order to translate the most important parts, which are important to initiate treatment.

https://www.amazon.com/dp/B07T89YLX1/ref=mp_s_a_1_1?crid=BK6MDRQDEGYP&keywords=toxoplasmose+handbuch&qid=1659653268&sprefix=toxoplasmose+handbuc,aps,357&sr=8-1

https://en.toxoplasmachronic.com

Please feel free to ask me anything - hopefully this will help at least one of you!

<3

 

[hapl808]

How did you get diagnosed, and how long after onset did you get treatment?

My illness started 25 years ago after getting sick in SE Asia - maybe from fish. I took abx about 10 years later and got 'almost' remission, but then it came back. Tried a few more times with Zithro and Doxy with varying success. Tested for various parasites multiple times by various specialists, but nothing ever found.

 

[Mrparadise]

@Martin aka paused||M.E. if you should be interested in my story, you might want to translate some more parts of the book, as your English is way better than mine. This of course only, if you should have the necessary engery and motivation for it!!

@Hip @Cort You might be interested as well, otherwise sorry for tagging you!

 

[Mrparadise]

How did you get diagnosed, and how long after onset did you get treatment?

My illness started 25 years ago after getting sick in SE Asia - maybe from fish. I took abx about 10 years later and got 'almost' remission, but then it came back. Tried a few more times with Zithro and Doxy with varying success. Tested for various parasites multiple times by various specialists, but nothing ever found.

Actually I did not get diagnosed at all. If I go back in time to where it started, it was the day I got my cats back from my girlfriend. My cats are domestic cats whereas hers were not. This clearly indicates that my cats got infected at her home and then shed the parasite in my litter box. Cats normally do that for about 2 weeks but the amount of ocyts are enormous. After some days, they get infective and you are then at high risk to contract the disease. Important is to mention that the parasite can survive up to 5 years in perfect conditions (in normal circumstances at home they say up to 18 months).

If you are not severely affected, you might want to try clindamycin as a monotherapy. I started with 2x 300mg but now I take 2x 600mg - this is not medical advice, of course!

Treatment started after 4.5 years of disease and put me into full remission in about 5-6 days of clindamycin only use - I am doing the full protocol nonetheless because I am afraid that the parasite load might have still been too high for my immune system to gain back homeostasis.

I hope this helps!

 

[hapl808]

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.

 

[Mrparadise]

I am very sorry to hear that! 😔

From all these anti-pathogens - to my knowledge - only Azithromycin (500+mg/d) is effective against Toxoplasmosis.

I really do not want to provide you with hope but hopefully you will be able to tolerate one of the effective antibiotics when you feel a bit better. Otherwiese start very low, please!! I really do not want to make any of you any worse!!!

<3

 

[hapl808]

From all these anti-pathogens - to my knowledge - only Azithromycin (500+mg/d) is effective against Toxoplasmosis.

Thanks for the info anyways. I did a few longer courses of zithro and they were somewhat helpful, but never to the degree of my first trial of zithro.

 

[Hip]

Very interesting, @Mrparadise. Congratulations in finding the cause of your ME/CFS.

There appears to be very little information online regarding a connection between the Toxoplasma gondii parasite and ME/CFS; but I found one article about it here:

Chronic fatigue syndrome, or myalgic encephalomyelitis (ME), features generalised, relapsing fatigue for at least 6 months accompanied by concentration and/or short term memory impairment in the absence of any alternative obvious organic cause. There may also be accompanying myalgia and there is usually a history of a preceding episode of pyrexial illness.

The syndrome is generally considered to be a complication of some viral infections (e.g. Coxsackie B, Epstein Barr) and its association with toxoplasma infection is uncommon. Patients with ME following toxoplasma infection appear to have a better prognosis than patients with ME due to viral infection or unknown cause.

Patients with persistent symptoms following toxoplasmosis with an elevated dye test titre, detectable IgM and/or a positive PCR should be offered antitoxoplasma antibiotic treatment. There has been much public interest in this illness which is also known as myalgic encephalomyelitis (ME), chronic fatigue syndrome or post viral fatigue syndrome. Cardinal features of the illness are:

• Generalised, relapsing fatigue for at least 3 months.
• Complains of prominent disturbance of concentration and/or short term memory impairment.
• The exclusion of any obvious organic cause for a similar illness.

The patients are usually previously well, most remember an initiating illness but muscle pain is not invariably present. Both malaise (54%) and myalgia (43%) can be common symptoms in toxoplasma infection, but in a study of patients who could fulfil the criteria of chronic fatigue syndrome, only 2/50 (4%) were believed to have the illness as a result of toxoplasma infection.

Therefore, toxoplasmosis can be regarded as an uncommon cause of chronic fatigue syndrome.

When toxoplasmosis is the cause, it is a result of primary infection in which chronic fatigue syndrome is a complication. At presentation, these patients have serological evidence of current/recent toxoplasma infection with raised dye test titres, which persist. In some patients, high levels of IgM may persist for very many years.

Fortunately patients with chronic fatigue syndrome due to toxoplasmosis appear to have a better prognosis than if the illness was due to a viral infection. Nevertheless, specific anti-toxoplasma therapy is not normally indicated and patients should be managed for chronic fatigue syndrome. However in a small number of patients, there is a persisting parasitaemia (detected by a PCR test on blood) and in these patients, specific anti-toxoplasma treatment is indicated.

PHE National Parasitology Reference Laboratory, Hospital for Tropical Diseases, 3rd Floor Mortimer Market, Centre, Capper Street, London WC1E 6JB

So this article suggests that Toxoplasma gondii infection is the cause of ME/CFS in 4% of patients. That figure seems high to me, since I don't think we have ever come across an ME/CFS patient on this forum before who found toxoplasmosis as the cause of their ME/CFS.

Nevertheless, it does suggest that ME/CFS patients might look into trying clindamycin or some of the other antibiotics that you say are effective against Toxoplasma gondii (azithromycin, clarithromycin, clindamycin sulfamethoxazole-trimethoprim), as there may be other patients on this forum whose ME/CFS is due to Toxoplasma gondii infection.


I have personally taken courses of azithromycin as well as sulfamethoxazole-trimethoprim without noticing any improvements in my ME/CFS symptoms.

 

[Pyrrhus]

My illness started 25 years ago after getting sick in SE Asia - maybe from fish. I took abx about 10 years later and got 'almost' remission, but then it came back.

Are you part of the 1997 club, too? I also got sick while traveling in Southeast Asia in the summer of 1997. And I keep hearing about more and more members of the 1997 club...

 

[hapl808]

Are you part of the 1997 club, too? I also got sick while traveling in Southeast Asia in the summer of 1997. And I keep hearing about more and more members of the 1997 club...

Wow - wtf? That made me get chills as I've never heard of that. Yes, 1997 in SE Asia. For me it was earlier that year I believe.

 

[tyson oberle]

If you are not severely affected, you might want to try clindamycin as a monotherapy. I started with 2x 300mg but now I take 2x 600mg - this is not medical advice, of course!
I know it's not medical advise, but some people might be at risk of getting c diff from clindamycin according to this article Antibiotics That Can Cause Diarrhea Related to C. diff - GoodRx

 

[godlovesatrier]

If you're unlucky to be me you get a terrible Scarlett fever type rash from clindamycin. I have zero side effects from it which makes things worse. But then the rash hits. I've taken it twice and the second time I took it the rash hit me within 48 hours. The rash itself seems to be a swelling of mucous membrane internally and externally. My GP at the time said there is a paper showing this is a very rare reaction between strep and ebv virus. Very few clinical examples exist.

Anyway just in case anyone tries it and they get the rash it will resolve on its own after 2 weeks. But will cover you from head to toe in a bright red Scarlett fever type rash.

I still try to remember how much better I felt in June 2020 after taking 22 days of antibiotics....one of which was clindamycin. I remember feeling better in many ways when I was on it than I did in the subsequent years. People have told me to take abx again to see if I do well. I recently took 500mg clarithromycin for two days and felt better. But I'm not sure I can live on them my ability to tolerate food without very bad diherrea goes out the window after only a few days on abx.

Your story is really interesting none the less and just further proof that ME can be an infectious disease misdiagnosis on so many occasions it's ridicolous.

 

[CSMLSM]

Dear members of PR

I made a promise to myself that I am going to inform you guys, if I should find something that helps me. I am probably just one of the few very lucky ones, but I might be wrong about that.

To make it short, for all of you who cannot tolerate long posts:

It was Toxoplasmosis which made me so sick that I was experiencing mild to moderate CFS-symptoms for almost 5 years. I am definitely free of all the debilitating symptoms since round about 3 weeks.

Key findings:

-Toxoplasmosis is not only dangerous for either pregnant or immunocompromised human beings!
-Especially its chronic state might have flown under the radar of doctors and medical researchers around the globe.
-IgM was always negative and it is NOT an indicator of chronic toxoplasmosis at all.
-Opt for LTT but maybe just take the antibiotic Clindamycin (2-3x 300mg) for 10 days and see if you improve - DON'T TRY THIS IF YOU ARE SEVERELY OR VERY SEVERELY AFFECTED!! YOU PROBABLY HAVE TO START WITH A WAY LOWER DOSAGE!!
-Even if Clindamycin does not improve your condition, there is still hope.
-For the long term sufferers among us, there is a protocol where you alternate between effective antibiotics (Azithromycin, Clarithromycin, Clindamycin Sulfamethoxazole-Trimethoprim - this is not a final list but the ones I used). The protocol is attached to this post and it has been released by Dr. Uwe Auf der Strasse (a German doctor and a hero!)
-The goal besides taking antibiotics is to starve the parasite of folate, which is achieved by taking Pyrimethamine 25mg 1-2 times a day.
-To prevent anemia, you should take folate as a supplement, BUT THERE IS ONLY ONE FORM WHICH CAN BE USED BY OUR ORGANISM, BUT NOT BY THE PARASITE - it's called Calciumfolinate (either take 6.25mg every day or 15mg every second day).
-The "double" antibiotic mentioned above (Sulfamethoxazole-Trimethoprim) itself is a folate antagonist - or at least one part of it is.
-Please at least check your folate levels and your kidney parameters from time to time, if you should want to try the protocol, where you alternate between three effective antibiotics (5 days each - see attached protocol).
-Toxoplasmosis cannot be completely eradicated but the goal is to reduce the load on your immune system to a point where it can handle the parasite on its own.
-I do not have an offical immune defect, but I've always had borderline levels of IgA (0.6-0.8), which could potentially explain my case.
-As Toxoplasmosis cannot build any resistance against antibiotics, there is hope that even if your immune system shouldn't be capable of fighting the parasite on its own, you could potentially take those medications for an extended period of time.
-Toxoplasmosis is able to adapt to a specific antibiotic (not by building resistance), but almost never before day 6 - this is why you would want to take an effective antibiotic for 5 days and then switch it out for another.
-Clindamycin is (kind of) effective as a monotheraphy (there is a study on that matter).
-You should at least take the protocol for 4 weeks, followed by 1-2 more months of relapse prevention (staring after the 30 days visible on the added protocol of Dr. Auf der Strasse).
-I am now on week 4 and nearly done with the initial protocol. After that, I am going to take the antibiotics on 3 days a week for 1 month and then for 2 days a week for antoher month.
-Consider the use of a PPI (preferrably Pantoprazol) as especially Clindamycin is sometimes causing a pill-induced peptic ulcer and/or an esophagitis - I am not a medical professional myself and this is just something I wanted to add in order to protect you from getting side effects.

I am convinced that I forgot something, but there is a book, a website and protocol from Dr. Uwe Auf der Strasse, which I am going to add here. Unfortunately the book and the protocol are only available in German at this very moment and therefore I tried my best in order to translate the most important parts, which are important to initiate treatment.

https://www.amazon.com/dp/B07T89YLX1/ref=mp_s_a_1_1?crid=BK6MDRQDEGYP&keywords=toxoplasmose+handbuch&qid=1659653268&sprefix=toxoplasmose+handbuc,aps,357&sr=8-1

https://en.toxoplasmachronic.com

Please feel free to ask me anything - hopefully this will help at least one of you!

<3

Happy you have found an answer to your situation. Maybe you have an error in one of your genes that regulates your immune system. A recent thread Epstein-Barr virus behind the development of autoimmune diseases, cancer, ME/CFS and Long COVID | Phoenix Rising ME/CFS Forums
This is a part of it-
In this review I describe how the possession of certain ancestral HLA-II alleles (a system used by our immune system to recognize which proteins are foreign, such as pathogens, and which are not) makes the individual genetically weak to control EBV latent cells, thus developing different diseases

Maybe you have something similar or even this genetic variant making you susceptible to the toxoplasmosis.

I would suggest being careful incase this is just something alongside the ME/CFS and treating it obviously lifts some of the burden. Trying to do too much too soon could be risky I would personally still pace and be cautious just incase.

Excited for you though, let us know how it goes please. Good luck!

 

[hapl808]

I still try to remember how much better I felt in June 2020 after taking 22 days of antibiotics....one of which was clindamycin. I remember feeling better in many ways when I was on it than I did in the subsequent years. People have told me to take abx again to see if I do well. I recently took 500mg clarithromycin for two days and felt better. But I'm not sure I can live on them my ability to tolerate food without very bad diherrea goes out the window after only a few days on abx.

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.

 

[Judee]

If you are not severely affected, you might want to try clindamycin as a monotherapy. I started with 2x 300mg but now I take 2x 600mg

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

 

[Mrparadise]

Thanks for the info anyways. I did a few longer courses of zithro and they were somewhat helpful, but never to the degree of my first trial of zithro.

My pleasure! It is really hard for me to make a comment on that, as I know how fragile most of you are because of this nasty state of chronic disease. I really do not want to recommend anything at all as our bodies are way too complex and I do not even have a medical degree at all. I just wanted to inform you what has helped me and what definitely put me into remission for at least 3 weeks now. For me it is pretty clear, as it does make sense regarding the causative events and the timeline - I hope that this is somewhat understandable.

I really hope that one day, all of you are going to recover from this hellish disease/syndrome!!! ❤️

 

[Mrparadise]

Very interesting, @Mrparadise. Congratulations in finding the cause of your ME/CFS.

There appears to be very little information online regarding a connection between the Toxoplasma gondii parasite and ME/CFS; but I found one article about it here:





So this article suggests that Toxoplasma gondii infection is the cause of ME/CFS in 4% of patients. That figure seems high to me, since I don't think we have ever come across an ME/CFS patient on this forum before who found toxoplasmosis as the cause of their ME/CFS.

Nevertheless, it does suggest that ME/CFS patients might look into trying clindamycin or some of the other antibiotics that you say are effective against Toxoplasma gondii (azithromycin, clarithromycin, clindamycin sulfamethoxazole-trimethoprim), as there may be other patients on this forum whose ME/CFS is due to Toxoplasma gondii infection.


I have personally taken courses of azithromycin as well as sulfamethoxazole-trimethoprim without noticing any improvements in my ME/CFS symptoms.

Many thanks for your comment here - highly appreciated!

I am very sorry to hear that you have not had any success with some of the mentioned antibiotics at all. I am totally aware that my story might not help many, but I felt the urge to inform you as the forum has been more than just helpful!

Thanks for all the support!!

If I should not relapse, I am going to study medicine next year and I am trying to contribute to the research on Fibromyalgia and ME/CFS, It will be a long way until I might be able to actually contribute to the research in this field but it feels like my destiny right now - I always wanted to become a doctor, so it is not just a thought.

I am really grateful for all the extremely intelligent people I have met here on PR - it is truly astonishing how many bright minds we got among us. And that is more than just noticeable even if all of you are trapped in this chronic state of disease..

You are all amazing people and I am SO grateful for being able to communicate with you on PR!

<3

 

[Mrparadise]

If you are not severely affected, you might want to try clindamycin as a monotherapy. I started with 2x 300mg but now I take 2x 600mg - this is not medical advice, of course!
I know it's not medical advise, but some people might be at risk of getting c diff from clindamycin according to this article Antibiotics That Can Cause Diarrhea Related to C. diff - GoodRx

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

 

[Mrparadise]

If you're unlucky to be me you get a terrible Scarlett fever type rash from clindamycin. I have zero side effects from it which makes things worse. But then the rash hits. I've taken it twice and the second time I took it the rash hit me within 48 hours. The rash itself seems to be a swelling of mucous membrane internally and externally. My GP at the time said there is a paper showing this is a very rare reaction between strep and ebv virus. Very few clinical examples exist.

Anyway just in case anyone tries it and they get the rash it will resolve on its own after 2 weeks. But will cover you from head to toe in a bright red Scarlett fever type rash.

I still try to remember how much better I felt in June 2020 after taking 22 days of antibiotics....one of which was clindamycin. I remember feeling better in many ways when I was on it than I did in the subsequent years. People have told me to take abx again to see if I do well. I recently took 500mg clarithromycin for two days and felt better. But I'm not sure I can live on them my ability to tolerate food without very bad diherrea goes out the window after only a few days on abx.

Your story is really interesting none the less and just further proof that ME can be an infectious disease misdiagnosis on so many occasions it's ridicolous.

This sounds nasty and I thank you for pointing this out to people reading this - much appreciated!

Thanks for your kind words!

 

[Mrparadise]

Happy you have found an answer to your situation. Maybe you have an error in one of your genes that regulates your immune system. A recent thread Epstein-Barr virus behind the development of autoimmune diseases, cancer, ME/CFS and Long COVID | Phoenix Rising ME/CFS Forums
This is a part of it-
In this review I describe how the possession of certain ancestral HLA-II alleles (a system used by our immune system to recognize which proteins are foreign, such as pathogens, and which are not) makes the individual genetically weak to control EBV latent cells, thus developing different diseases

Maybe you have something similar or even this genetic variant making you susceptible to the toxoplasmosis.

I would suggest being careful incase this is just something alongside the ME/CFS and treating it obviously lifts some of the burden. Trying to do too much too soon could be risky I would personally still pace and be cautious just incase.

Excited for you though, let us know how it goes please. Good luck!

This is very interesting and I will definitely elaborate on that - thanks a lot!!

I am definitely going to be cautious and I am well aware of the massive gift I received. I would not want to risk anything at all, even if the treatment with antibiotics for such a long time itself might be highly risky.