successful CFS treatment - occult strep infection, my story

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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
 

Wolfcub

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What a wonderful, positive post, @stilltrying96 :) I am so pleased to hear you have found a way through -and hopefully for ever out of -that terrible illness !
This may be of value to others too. Who knows?

What shocked me, absolutely is the doctors were continually seeing elevated serum C reactive protein....yet diagnosed you with a psychiatric disorder !! :devil:

I hope you will go from better, to better still in the time to come :hug:
 

sb4

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@stilltrying96 Interesting story. I looked up Trimetazidine on wikipedia and this caught my attention:

"Trimetazidine is an anti-ischemic (anti-anginal) metabolic agent, which improves myocardial glucose utilization through inhibition of fatty acid metabolism, also known as fatty acid oxidation inhibitor.

It improves left ventricular function in diabetic patients with coronary heart disease.

Trimetazidine inhibits beta-oxidation of fatty acids by blocking long-chain 3-ketoacyl-CoA thiolase, which enhances glucose oxidation.[7] In an ischaemic cell, energy obtained during glucose oxidation requires less oxygen consumption than in the beta-oxidation process. Potentiation of glucose oxidation optimizes cellular energy processes, thereby maintaining proper energy metabolism during ischaemia. By preserving energy metabolism in cells exposed to hypoxia or ischaemia, trimetazidine prevents a decrease in intracellular ATP levels, thereby ensuring the proper functioning of ionic pumps and transmembrane sodium-potassium flow whilst maintaining cellular homeostasis."

You noticed an improvement with supplements and drugs that helped glucose utilization. Also with vasodialators (from too much constriction / not enough oxygen, POTS?).

I notice also how it says in improves left ventricular function which Dr Cheny found to be dysfunctional in CFS.

Makes me wonder about my case. My onset was from tonsilitis, my worst symptoms are all heart based (no PEM), I have had 3 times where I have had full on heart attack like symptoms complete with an intense feeling of doom. I have problems with carb tolerance that has been helped with supplements. I have POTS and therefore problems with vasoconstriction and blood pooling etc. I also had some infectious disease tests done and the only thing above range was some kind of Strep. I asked docs about it and they said it was only slightly above range so it didn't matter.

On the other hand I don't have sore throat or anything like that, nor do I get tonsillitis anymore. In fact I rarely get ill.

Do you know of some way to cheaply test for antistreptolysin O antibody privately? Don't think I have got a chance through the NHS.

EDIT: Found this place. Seems to be based in London though. https://www.medicalexpressclinic.co.uk/private-blood-tests-pricing
 
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sb4

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Crazy prices. For example paid for a whole blood Magnesium test in a private lab in nearby Germany €2.68, at that place it's £75.50!
I know right, not only that, the strep test is advertised at £42 but I just got an email back that it would be a total cost of £84. Doesn't matter anyway, they are only based in London so I can't use them.
 
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@stilltrying96

this is a topic I have mentioned in other threads.

I have a similar story, but I haven't healed (I hope) yet. All my life with tonsillitis since a child, later I had IBS, joint pain, braing fog... A couple of doctors told me that I should get my tonsils removed, but then the guys in charge of the surgery (otorrinologists) would refuse saying I would get worse.

Last april went to visit another throat doctor and he said it could be the streptococus. I've had a reduction of my tonsils,but not surgery. The month after the reduction all my symptons got much worse, i got the worst flare, but now im feeling a better. its been 6 weeks already. The next step is to take a vaccine to lower the ASOT. With this vaccine it can take up to a year to get healed, according to the doctor ( if it is really the case).

But my blood tests show the C reactive protein within its limits. The first otorrinologist I visited said that if it is not high you don't qualify for surgery. Some others don't care if it is high or not, and think that a chronic streptocus infections can lead to CFS.

How long did it take you to be CFS free?

Thanks a lot for sharing your story!!
 
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The upper part of the throat where tonsils are, at that height exactly is where the last two vertebrae are placed that are known to cause CCI and only at a coupe of centimeter of distance....

Current medical practice is absurd by cutting the body into parts that are strongly connected, to its possible that infection migt be causing some type of CCI and malfunction in general at that area affecting the whole body, ligaments, etc.. and while solve it with surgery or antibiotics others can solve it by moving the vertebrae to the right position like Jeff or Jen Brea.

It seems all the fuss is in that area of the body, those 5-10 cm and sorroundings. Looking from the front (throat) or the back.
 
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@suevu Very good point about the position of the tonsils in relation to the top of the cervical spine. Could mean for ENT onset that it could have "pushed" on the vertebrae to be enough to break the camels back.
It makes a lot of sense, we never tend to look at the human body/systems by proximity but instead we do by functionality which is so wrong. Inflammation can move pernamently those vertebrae and a low grade infection keep some kind of autoinmune response going on, it seems that area of our body is so critical that can cause a myriad of symptoms (jen brea and jeff said their symptoms cleared almost instantly when placing collars) and cause some kind of infinite loop of health conditions that must be broken somewhere.

CCi causes all our symptoms and low immune response, low immune response can cause overgrowth of certain pathogens like this guy, so the infection keeps alive and keeps the CCI itself, all conditions feed each other.

Some break the infection and the CCI resolves, some resolve the CCI with surgery or other things and the infections resolve as the normal funcioning of the body is restored.

Other can do FMTs to restore a diversity that helps fight infections and restores microbiome balance and therefore reduces autoinmunity that causes CCI and infections. Its extremely complex but everything is linked.

More than a metabolical trap like some call it (I think the metabolic issues are scondary) I would call it a loop.

Loops can be broken. It doesn't mean its easy and the exit conditions may vary greatly from patient to patient but in my humble opinion I think we all are trapped in a loop and we all can break it and get to the normal flow of the body function.
 
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I must also admit Im cheating a little bit to get to this conclusion, as I have done an MRI and it seems pretty clear that I have CCI as well (only mild but I have it), and my onset has been many throat infections + a bunch of antibiotics :)
 
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I experience really intense sore throats daily and often cannot talk at all.

My tonsils were removed 55 years ago. Does strep only live on tonsils?
They also live in the throat, during my onset I had a throat infection every 2-3 months, but my tonsils were always perfectly fine. Now I suffer constant sore throat, not too severe, it has been worse but there it is.
 
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Current medical practice is absurd by cutting the body into parts that are strongly connected
I experience all this swelling in the mouth lips palette pulp sinus throat adenoid area eyes. These anatomies are millimeters away from: lower brain stem, and key brain organs. Hence: they feel swollen also. And my aching neck is SURE nearby.

Angiodema is a word for: swollen tissue like that...and I assume has a histamine component.

I went back and forth as the DENTIST saw it: and actually said perhaps is a food allergy. This particular dentist however does not view the body as connected together. (which I do). (work on my feet, fix my back.) (work on my thumb points, eye infection ceases).

The Doctor, the Starer, would say: What does the dentist say. As if: all this tissue is somehow a TOOTH issue. And then would suggest I take antidepressants. Gosh, I don't see the relationship between SWOLLEN TISSUE that is painful, evident, and DEPRESSED. Makes no sense at all.

I found this maddening. Oh well.
 
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Great post. congrats and really great to see a young person whose life is no longer ruined! Cheers and here's to a great future.

One think i'm curious about is at what point did they finally give you an echocardiogram (electrocardiogram you metnioned was normal) of your heart?

incidentally, if you have any peculiar aftermath, heaven forbid, look into PANDAS which can occur after strep if your prone to AI illness generally.

it's so hard not to opine on it all. its such a sad state of med care that if you didn't respond to antibitoitcs for the suspected infection, the response these days is a shrug of the shoulders. No one goes past box 1 of the flow chart.
 
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Have you all heard of PANS/PANDAS? PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. PANS stands for pediatric acute neuropsychiatric syndrome.

PANDAS is a complication of strep infection. Kids get sick with a range of symptoms including sudden onset OCD, severe anxiety, sudden onset tics and Tourette's, and emotional lability. PANDAS is often found alongside a movement disorder called Sydenham's chorea. In PANDAS, the symptoms seem to be related to auto-antibodies that attack specific parts of the brain.

From the Moleculara labs wesbite which produces a test for autoantibodies associated with the condition.

'PANDAS can be thought of as “rheumatic fever” of the brain, points out Dr. Susan Swedo, lead investigator from the NIMH. “And just as Sydenham’s chorea gives you abnormal movements, PANDAS gives you abnormal thoughts and behaviors.” '

Susan Swedo is a researcher who first identified PANDAS. The PANS diagnosis came into being because children get identical symptoms as PANDAS but due to other causes than strep.

Jennifer Francovich studies PANS/PANDAS at Stanford. She is now on the board of the Open Medicine Foundation.

Dristan Algelliu, a researcher at Columbia University was looking for a "trap door" to see how strep caused antibody access to the brain. He conducted a study in mice and found that strep, even dead strep, triggers production of a special kind of T-cell called a Th17 cell. Th17 cells then injure the blood-brain barrier and give circulating antibodies abnormal access to the brain.

"One finding was that strep eventually led to massive production of a certain kind of immune cell, Th17, along with inflammation of the brain. In humans and rodents alike, Th17 cells take on the role of a conductor, telling other immune cells what to do. They have been implicated in the destruction of the BBB and are found in increased numbers in many autoimmune diseases. In the experimental mice, Agalliu saw that Th17 cells had poked holes in the BBB, opening the floodgates into the brain. Inside the brain, strep bacteria were nowhere to be found, but there were plenty of antibodies normally kept out by a healthy BBB."

This last paragraph is from an article in Discover Magazine: http://discovermagazine.com/2017/april-2017/hidden-invaders.

The areas of the brain that the antibodies gained access to are within the areas of the brain that Jared Younger has found inflammation in ME/CFS patients.

PANDAS/PANS and Sydenham's chorea link to the center area of the brain that Younger is studying.