- Messages
- 7
I've been successfully treated for CFS and i'm here to share my story. I owe it to you and to us, and i hope from the bottom of my heart that everyone gets treated for good and they don't have to suffer anymore. I understand my success story might be very exclusive and maybe unhelpful to others, but i strongly believe that at least some of you have gotten sick due to the same reason as me.
So, I'm 23 years old now and it's 2019. When i was 18 (2014) i started getting really sick with a sore throat and fever, and this happened about 12 times in 1.5 years. Doctors in my country are literally clueless so nobody knew what kind of infection caused it and i was literally put on 12 cycles of single or double antibiotic therapy. During that period i was diagnosed with active CMV, latent EBV and latent toxoplasmosis. Throat cultures always came back nill. Then of course due to the antibiotics my terrible digestive issues begun and i kept getting sick again and again about once a month each month, between 2014-2016 witch receiving occasional antibiotic therapy.
In 2016 all hell break loose after getting a bout of (then uknown then, screw [excuse me] doctors) rheumatic fever. Reccurent HSV activations (3 times a month) kept happening and i also started to experience crushing fatigue and a host of other of problems that we all know of and that i will detail a little later. Later i was hospitalized again due to resistant and aggressive fever but i swear doctors didn't really look at what was causing and just treated me with IV antibiotics for 3 days again. The time between 2016-2019 is really a foggy nightmare of constant suffering that i can't very precisely put in a correct timeline but it doesn't matter much. I was hit with debilitating post exertional fatigue, anything mildly straining (like taking a 3 minute walk to throw the trash out, god forbid grocery shopping) put me in bodily and mental anguish as i was unable breathe properly, got palpitations, a painful and tight chest and overall feeling that i was gonna die that put me in a non-movement limbo for about 7-8 for maximum 15 minutes maximum of mild physical exertion. I had whole-body pains, especially in soft tissue, i had terrible sleep (oftentimes walking pale with red eyes and a raging heatbeat), i had POTS and dysautonomia symptoms, i had awful cognitive symptoms that got worse after physical excretion. I'm sorry for not detailing it further because i want to get to how i got treated by i can answer any and all questions about my symptoms.
In the meantime, with all mental power i had left, i kept researching on what was happening to me as the doctors have repeatedly failed me (thank you so much for keeping up this forum, i feel like i owe this post to you all). I tried every supplement under the sun with little to no avail. I had almost every medical test possible in my country: multiple thyroid panels, multiple full hormonal panels, full immune, blood and metabolomic bloodwork, whole body CT scan, brain MRI, vitamin bloodwork, electrolytes, autoimmunity bloodwork, colonoscopy, multiple cardiovascular exams and everything always came back normal except a single marker of inflammation C reactive protein that always came back elevated and some occasional CMV flare-ups that led me to believe that was the root of my problems after researching everything else. I was repeatedly denied antivirals and i was left to my own fortune. Doctors called me crazy, diagnosed depression, said in my face multiple times that CFS is not a legit but a phantom disease and literally obliterated any hope of my getting treated. I suffered a limbo and mind-body collapse between 2018-2019 when i was literally (and i mean it, i'm tearing up as i'm writing this) waiting to die so my suffering ends. I must add i visited multiple doctors 50s of times: GPs, mouth and throat doctors, hematologist, infectiologist, neurologist, psychiatrist, GI doctor.
By then i started noticing a pattern that slowly but steadily led to some breakthrough conclusions. I had already tried all supplements under the sun and the only ones that remotely helped cognition and fatigue wise where vitamin B1, vitamin B2, ALCAR, Carnosine and ALA. What these had in common is that they help in mitochondrial disorders, ischemic/hypoxic conditions and other stuff like that without having direct immunomodulatory or antimicrobial activities. Everytime i was exerting physical effort i had a a generalised bodily dysphoria but it was concentrated in my chest and upper left back and produced strong gut feeling that something was off - like my heart was going to stop, i imagined this off feeling is what people feel before they get a heart attack. Electrocardiograms kept appearing normal but i kept pushing it and then it happened: I tried 2 medications used for lack of bloodflow to heart, one for ischemic angina: Tadalafil, and one of heart failure: Trimetazidine. Lo and behold i could walk again and i could exert about 20 to 3-0minutes mild physical effort before i got tired. I tested this again and again untill i was evident to me something was wrong with my heart.
Then it all made sense. My mother was mentally crushed from seeing me wither like that and did the simplest of things: she took me to a simple mouth nose and throat doctor (the 5th of this specialty i've seen over the sick years) that was not hospital associated, nor famous, nor terribly expensive. She took a look at my tonsils and after hearing all of my symptoms she arrive to a simple conclusion: You are not crazy, you have an occult strep infection that is making you terribly sick and we need to get rid of it before your heart, kidneys and joints give up.
Then my journey to freedom was close. I got a throat swab and a blood test for ASOT, which nobody of the previous idiot doctors (excuse me) had checked for before. ASOT is a marker of strep infection both ''latent'' and active in the body. ASOT means antistreptolysin O antibody and it is our immunes system defense against the hemolytic toxin that this devil of a bacteria produce. The problem is, this antibody attacks heart, kidney, joint and brain cells causing the above problems. It caused rheumatic fever (which happened to me) a complication of which is heart failure. Lo and behold with maximum safety margin of 400 for ASOT i had a value of 880. I was put on really strong antibiotics (5, 1 alone, 2 in combination, 2 in combination) but the microbe turned out resistant to all. I got colitis from the antibiotics wich later passed. The only antibiotic that strep is supposedly not resistant to is to penicillin derivatives which after cultures it appeared to be resistant to even that. It all made sense, when i first got sick in 2014, 9 of 12 cycles of antibiotics i was on were penicillin derivatives and this strep managed to become resistant to it.
The only solution was to have my tonsils taken out which i did (i won't go into detail, it was a turbulent month with such pain that made me wish i never got treated, if anyone goes through this operation please ask for opioids) but then the MIRACLE i happened. I was and i am not (6 months as of now) tired anymore and experience no other CFS related symptoms at all. I deal with residual depression because my life and studies fell apart during my sickness years but that is honestly nothing. I can ride my bike for 16kms worth of distance without getting near-death tired or feeling off, i can dance my ass off, i can walk outside, i can bodily participate in every aspect of my life that demands physical exertion without issue. I hope this doesn't come off as some perverted flex, i'm detailing it so as to give hopes to everyone that sometimes there is treatment and sometimes seemingly out of nowhere. I was waiting to die, and now here i am alive and CFS free. I believe in a future where we can all live like that and i'll do all i can to make that happen.
To all, you are not crazy and i know that. Please look for occult infections in your tonsils if you feel you could be having that, Get an ASOT titer and an elaborate tonsil swab, including inside the openings of the tonsils. Ask for a detailed throat culture. If you suspect your heart is strongly involved in your CFS symptoms give trimetazidine a try to see if it helps you and proceed to further testing.
Do not give up, we are here to help and we'll do what we can so everyone recovers. That was my story. Like i said i owe it to you all as this forum helped me trough my darkest days. I'm here to answer any questions.
https://en.wikipedia.org/wiki/Rheumatic_fever
https://en.wikipedia.org/wiki/Anti-streptolysin_O
So, I'm 23 years old now and it's 2019. When i was 18 (2014) i started getting really sick with a sore throat and fever, and this happened about 12 times in 1.5 years. Doctors in my country are literally clueless so nobody knew what kind of infection caused it and i was literally put on 12 cycles of single or double antibiotic therapy. During that period i was diagnosed with active CMV, latent EBV and latent toxoplasmosis. Throat cultures always came back nill. Then of course due to the antibiotics my terrible digestive issues begun and i kept getting sick again and again about once a month each month, between 2014-2016 witch receiving occasional antibiotic therapy.
In 2016 all hell break loose after getting a bout of (then uknown then, screw [excuse me] doctors) rheumatic fever. Reccurent HSV activations (3 times a month) kept happening and i also started to experience crushing fatigue and a host of other of problems that we all know of and that i will detail a little later. Later i was hospitalized again due to resistant and aggressive fever but i swear doctors didn't really look at what was causing and just treated me with IV antibiotics for 3 days again. The time between 2016-2019 is really a foggy nightmare of constant suffering that i can't very precisely put in a correct timeline but it doesn't matter much. I was hit with debilitating post exertional fatigue, anything mildly straining (like taking a 3 minute walk to throw the trash out, god forbid grocery shopping) put me in bodily and mental anguish as i was unable breathe properly, got palpitations, a painful and tight chest and overall feeling that i was gonna die that put me in a non-movement limbo for about 7-8 for maximum 15 minutes maximum of mild physical exertion. I had whole-body pains, especially in soft tissue, i had terrible sleep (oftentimes walking pale with red eyes and a raging heatbeat), i had POTS and dysautonomia symptoms, i had awful cognitive symptoms that got worse after physical excretion. I'm sorry for not detailing it further because i want to get to how i got treated by i can answer any and all questions about my symptoms.
In the meantime, with all mental power i had left, i kept researching on what was happening to me as the doctors have repeatedly failed me (thank you so much for keeping up this forum, i feel like i owe this post to you all). I tried every supplement under the sun with little to no avail. I had almost every medical test possible in my country: multiple thyroid panels, multiple full hormonal panels, full immune, blood and metabolomic bloodwork, whole body CT scan, brain MRI, vitamin bloodwork, electrolytes, autoimmunity bloodwork, colonoscopy, multiple cardiovascular exams and everything always came back normal except a single marker of inflammation C reactive protein that always came back elevated and some occasional CMV flare-ups that led me to believe that was the root of my problems after researching everything else. I was repeatedly denied antivirals and i was left to my own fortune. Doctors called me crazy, diagnosed depression, said in my face multiple times that CFS is not a legit but a phantom disease and literally obliterated any hope of my getting treated. I suffered a limbo and mind-body collapse between 2018-2019 when i was literally (and i mean it, i'm tearing up as i'm writing this) waiting to die so my suffering ends. I must add i visited multiple doctors 50s of times: GPs, mouth and throat doctors, hematologist, infectiologist, neurologist, psychiatrist, GI doctor.
By then i started noticing a pattern that slowly but steadily led to some breakthrough conclusions. I had already tried all supplements under the sun and the only ones that remotely helped cognition and fatigue wise where vitamin B1, vitamin B2, ALCAR, Carnosine and ALA. What these had in common is that they help in mitochondrial disorders, ischemic/hypoxic conditions and other stuff like that without having direct immunomodulatory or antimicrobial activities. Everytime i was exerting physical effort i had a a generalised bodily dysphoria but it was concentrated in my chest and upper left back and produced strong gut feeling that something was off - like my heart was going to stop, i imagined this off feeling is what people feel before they get a heart attack. Electrocardiograms kept appearing normal but i kept pushing it and then it happened: I tried 2 medications used for lack of bloodflow to heart, one for ischemic angina: Tadalafil, and one of heart failure: Trimetazidine. Lo and behold i could walk again and i could exert about 20 to 3-0minutes mild physical effort before i got tired. I tested this again and again untill i was evident to me something was wrong with my heart.
Then it all made sense. My mother was mentally crushed from seeing me wither like that and did the simplest of things: she took me to a simple mouth nose and throat doctor (the 5th of this specialty i've seen over the sick years) that was not hospital associated, nor famous, nor terribly expensive. She took a look at my tonsils and after hearing all of my symptoms she arrive to a simple conclusion: You are not crazy, you have an occult strep infection that is making you terribly sick and we need to get rid of it before your heart, kidneys and joints give up.
Then my journey to freedom was close. I got a throat swab and a blood test for ASOT, which nobody of the previous idiot doctors (excuse me) had checked for before. ASOT is a marker of strep infection both ''latent'' and active in the body. ASOT means antistreptolysin O antibody and it is our immunes system defense against the hemolytic toxin that this devil of a bacteria produce. The problem is, this antibody attacks heart, kidney, joint and brain cells causing the above problems. It caused rheumatic fever (which happened to me) a complication of which is heart failure. Lo and behold with maximum safety margin of 400 for ASOT i had a value of 880. I was put on really strong antibiotics (5, 1 alone, 2 in combination, 2 in combination) but the microbe turned out resistant to all. I got colitis from the antibiotics wich later passed. The only antibiotic that strep is supposedly not resistant to is to penicillin derivatives which after cultures it appeared to be resistant to even that. It all made sense, when i first got sick in 2014, 9 of 12 cycles of antibiotics i was on were penicillin derivatives and this strep managed to become resistant to it.
The only solution was to have my tonsils taken out which i did (i won't go into detail, it was a turbulent month with such pain that made me wish i never got treated, if anyone goes through this operation please ask for opioids) but then the MIRACLE i happened. I was and i am not (6 months as of now) tired anymore and experience no other CFS related symptoms at all. I deal with residual depression because my life and studies fell apart during my sickness years but that is honestly nothing. I can ride my bike for 16kms worth of distance without getting near-death tired or feeling off, i can dance my ass off, i can walk outside, i can bodily participate in every aspect of my life that demands physical exertion without issue. I hope this doesn't come off as some perverted flex, i'm detailing it so as to give hopes to everyone that sometimes there is treatment and sometimes seemingly out of nowhere. I was waiting to die, and now here i am alive and CFS free. I believe in a future where we can all live like that and i'll do all i can to make that happen.
To all, you are not crazy and i know that. Please look for occult infections in your tonsils if you feel you could be having that, Get an ASOT titer and an elaborate tonsil swab, including inside the openings of the tonsils. Ask for a detailed throat culture. If you suspect your heart is strongly involved in your CFS symptoms give trimetazidine a try to see if it helps you and proceed to further testing.
Do not give up, we are here to help and we'll do what we can so everyone recovers. That was my story. Like i said i owe it to you all as this forum helped me trough my darkest days. I'm here to answer any questions.
https://en.wikipedia.org/wiki/Rheumatic_fever
https://en.wikipedia.org/wiki/Anti-streptolysin_O