Dr Markov CBIS Theory of ME/CFS - General Discussion

[Hipsman]

Update: I finally came back to Kyiv to resume treatment, finished 3-day urine test today and will have results in a week... Sorry for delays! I will continue this treatment until we know for sure if it works, at least in my case.

Any funding for this experimental treatment with autovaccines will be appreciated, but as I said I will finish this in any case, so it's not obligatory... You can send private message if you want to help...

 

[Hipsman]

Update: I think I have significantly less PEM from physical activities now, I haven't trialed anything since last autovaccine course, so it could be thanks to autovaccines, but I'm not 100% sure, this is not a kind of improvement that is easy to spot, I just noticed that I don't feel wiped out after spending around 5 hours at the clinic (allot of it was just waiting, had to do some "mandatory" check up)

In other news, the forth 3-day urine testing results came in, it only spotted Staphylococcus epidermidis one time, nothing else.

But, Markov also ordered bacterial culture from nose and throat, they found: Streptococcus pyogenes, Streptococcus pneumoniae, Escherichia coli and Staphylococcus aureus.

I got the results a few hours ago and haven't spoken to Igor Markov, but I feel like it's worth trying to make Streptococcus autovaccine for me.


P.S in the previous update here I said I finished 3-day urine test, that was third 3-day urine test, it showed
Staphylococcus epidermidis just like the forth time, Markov said Staphylococcus epidermidis is not the bacteria we are looking for.

 

[perrier]

Update: I think I have significantly less PEM from physical activities now, I haven't trialed anything since last autovaccine course, so it could be thanks to autovaccines, but I'm not 100% sure, this is not a kind of improvement that is easy to spot, I just noticed that I don't feel wiped out after spending around 5 hours at the clinic (allot of it was just waiting, had to do some "mandatory" check up)

In other news, the forth 3-day urine testing results came in, it only spotted Staphylococcus epidermidis one time, nothing else.

But, Markov also ordered bacterial culture from nose and throat, they found: Streptococcus pyogenes, Streptococcus pneumoniae, Escherichia coli and Staphylococcus aureus.

I got the results a few hours ago and haven't spoken to Igor Markov, but I feel like it's worth trying to make Streptococcus autovaccine for me.


P.S in the previous update here I said I finished 3-day urine test, that was third 3-day urine test, it showed
Staphylococcus epidermidis just like the forth time, Markov said Staphylococcus epidermidis is not the bacteria we are looking for.

Thank you for this update. We are all waiting to hear more. But it is looking like you have less PEM, from what you say.

 

[godlovesatrier]

So the nose and throat swabs I think I've had these and they've showed nothing. But it was on the nhs. Do you know if he did anything special to culture your throat swab?

Also does anyone know if these strains of strep are pathogenic or can cause various issues? Or did Markov tell you @Hipsman ?

Thanks very much for the update!

 

[Hipsman]

@godlovesatrier nothing special, most of the time Streptococcus didn't show up on the swab tests I ordered. Looking at previous tests I did, it seems the more tests you do, the more different bacteria you can find!

Also, while looking at previous tests, I just found out that Streptococcus pyogenes also shoved up in the previous throat swab I did at Markov clinic, so this is not new, I also had one throat swab show Streptococcus pyogenes in 2017 at a lab from public hospital.

Also does anyone know if these strains of strep are pathogenic or can cause various issues?

Streptococcus pyogenes as the name suggests is pathogenic, I know it can cause PANDAS syndrome: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Interestingly I have neural ticks and tick are common in PANDAS. At one point I was looking into treating Streptococcus that was found in 2017, but lab tests at the time didn't find it again, so I moved on.

 

[godlovesatrier]

Interesting. Hopefully the autovaccines really work.

 

[Hipsman]

Update: Had consultation with Igor Markov today, I'm going to get custom autovaccine this time, consisting of bacteria that was recently found:

Streptococcus pyogenes (2 strains), Staphylococcus aureus (2 strains), Streptococcus pneumoniae (1 strains), Staphylococcus epidermidis (1 strains).

10 shots in total, vaccine should be ready in about two weeks I think.

I think I was wrong earlier when I said that Staphylococcus epidermidis was not the bacteria we are looking for, I just assumed so at the time, Dr Igor Markov didn't say that.

 

[BrightCandle]

Update: Had consultation with Igor Markov today, I'm going to get custom autovaccine this time, consisting of bacteria that was recently found:

10 shots in total, vaccine should be ready in about two weeks I think.

I think I was wrong earlier when I said that Staphylococcus epidermidis was not the bacteria we are looking for, I just assumed so at the time, Dr Igor Markov didn't say that.

Are you going out there to the clinic to get these or have you worked out a way to do this via the post/otherwise?

 

[andyguitar]

Are you going out there to the clinic to get these or have you worked out a way to do this via the post/otherwise?

@Hip is trying to find a way to do it via the post.

 

[Hipsman]

Are you going out there to the clinic to get these or have you worked out a way to do this via the post/otherwise?

I just go to the clinic physically.

 

[Hip]

Are you going out there to the clinic to get these or have you worked out a way to do this via the post/otherwise?

The possibility of becoming a remote patient of the clinic is still being looked into, and we are almost there.

Like others here, I tested positive for bacteria in my urine using a dipslide test. So that's the first step to getting treatment from the Markov Clinic.

I was then able to successfully ship my dipslide agars with the bacteria to the Markov Clinic using a 3-day courier, and the bacteria arrived alive. That allowed the clinic to identify the bacteria, and also, from the live bacteria I sent them, they will be able to make me some autovaccines to treat my kidney dysbiosis.

I then had an email consultation with Dr Markov ($200), and sent him the medical details he requested. He confirmed that my symptoms and circumstances, and of course the positive urine test, are very typical of CBIS.

The final stage is for the Markov Clinic to create my autovaccines and send them to me in the UK. The clinic identified four bacterial species in my kidneys by the urine test, so this requires me to take vaccines and autovaccines to target all four bacteria.

The clinic told me the total cost for these vaccines and autovaccines is $444, excluding shipping to the UK. That price covers 6 months worth of vaccine treatment. I presume I will have to pay a similar price again for the next 6 months. But at the end of first 6 months, I should have some indication of whether I am getting better or not.

However, we have a bit of an issue at the moment, because according to some information that the Markov Clinic recently discovered, it is against Ukrainian customs regulations to export liquid medicines in ampoules (which is the form vaccines and autovaccines take). If this is really true, then international shipping of the vaccines by courier may not be possible, and it may require finding a person who is flying to the UK to take my vaccines with them. Or of course, a personal visit to the clinic to pick up my vaccines in person.

I am trying to find more information about this Ukrainian customs regulation that prohibits export of ampoules, to try to confirm whether this rule really exists.

 

[Hip]

So far, out of the six PR members who have tested their urine for bacteria using the Markov high sensitivity urine test, all six were positive, which to Dr Markov indicates nephrodysbacteriosis (kidney dysbiosis).

These 6 members are @Hip (me), @Cipher, @Hipsman, @Nuno, @BrightCandle and @Martin aka paused||M.E.


In Dr Markov's tests of adult healthy controls, only 7.1% were positive by this urine test.

 

[godlovesatrier]

Nice one Hip, look forward to hearing how you get on once you get your hands on the autovaccines. Wish all of you well in having it get you back to health also. If you do well I think I will give this a whirl, might get me back to where I need to be, might not. As I am already now at 80% but still having some bacterial issues, had a bladder infection there for about 3 weeks, which has still not fully gone. Maybe it's all related. Plus neutropenia could be caused by all sorts of things but might also be due to bacterial issues.

 

[Consul]

Hi ppl

So from what i gather this Dr Markov thing looks quite promising even if we cant know anything for sure. But what is health authorities or researchers or me associations doing about it? I know some of these have spoken to dr Markov but what came out of it?

I dont think we can just sit and wait for forum members to get the treatment and see what happens, the treatment is months/years long.

I think someone important needs to come out and tell us whats going on, or if nothing happens perhaps action could be provoked by having the news media report on it.

I just want to be assured that there is no time being wasted here.

 

[Hip]

@Consul, I have the same concerns as you, that the ME/CFS research community's interest in Dr Markov's theory and treatment of ME/CFS may grow only slowly, and assuming the treatment does indeed work, it will be some time before there are replication studies, and some time before we see the take up of this treatment in other countries.

As you say, Dr Markov's autovaccine treatment is lengthy, and so even for ME/CFS patients like @Hipsman who started the treatment in June 2021, it's will be 2 to 3 years before we know the full results. Although we should have a good sense of whether it is working after about a year of treatment. @Hipsman already feels that his PEM has improved a little, though he says it is hard to tell.

This is one of my motivations for trying to become a autovaccine guinea pig, so that we might at least have some anecdotal accounts of how the treatment went 2 or 3 years from now. If we can open up the possibility of remote treatment at the Markov Clinic, we may find some more ME/CFS patients become interested in trying this treatment.


Do you know which ME/CFS researchers have spoken to Dr Igor Markov?

I sent a volley of emails to a dozen or so ME/CFS researchers who I thought might be interested in Dr Markov's theory and treatment, especially researchers with an interest in bacterial, leaky gut and LPS etiologies of ME/CFS. Only the Morten Group in Oxford replied to my email and showed some interest.

The Morten Group by the way are doing lots of interesting ME/CFS research on a low budget (detailed in this presentation), and I hope they manage to secure more funding, because there are not many good ME/CFS research groups in the UK.



Unfortunately ME/CFS research does go far more slowly than we would like. If we look at the rituximab research, for example, which was the great hope of the ME/CFS community for many years, the very first paper published by Fluge and Mella was in 2009, and their final phase III clinical trial was published ten years later in 2019 (and unfortunately showed rituximab was not generally beneficial for ME/CFS). So that rituximab saga took a full ten years from beginning to end.

 

[5vforest]

In Dr Markov's tests of adult healthy controls, only 7.1% were positive by this urine test.

I would be a lot more interested if this could somehow be independently verified, e.g. if the members sending in dipslides could also collect samples from healthy family members or something.

 

[Hip]

I would be a lot more interested if this could somehow be independently verified, e.g. if the members sending in dipslides could also collect samples from healthy family members or something.

That could be easily done. Anyone can buy a box of 10 urine dipslides online for around $30. Dipslide sellers are listed in this pdf file in this post. You can then hand out one dipslide to several of your healthy friends and family, and ask them to place the dipslide in their stream of urine for 3 mornings in a row. If any bacteria is seen to grow on the agar overnight, you have a positive result.

Dr Markov usually provides a new dipslide to use each day, but for reasons of economy, I suspect the same dipslide could be used for 3 days. I tried re-using the same dipslide for 3 days in a row, and I was able to get bacterial growth on it on the second or third day.

Dipslide instructions state to incubate overnight at 37°C, but I believe Dr Markov says it is OK to incubate a room temperature, which then makes things easier. And this paper indicates room temperature urine cultures work fine. So easy to test healthy controls.


I think @Nuno already tested himself (positive) and his mother and father (both negative).

 

[Hipsman]

@Hipsman already feels that his PEM has improved a little, though he says it is hard to tell.

I think it was hard to tell becouse I was not looking out for this kind of improvement, I looked for improvement in energy, brain fog and neurological symptoms/anxiety. Improvement in PEM alone was not on my radar. And still thou I’m not sure how would I classify a major improvement in PEM alone, perhaps by going on very exhaustive 20km hike, but without practice for a few years I don’t think my legs are good enough to just keep going after 7km or so.

"Mental PEM" for me is feeling a sort of migraine, not able to concentrate/increased brain fog and wanting to sleep after 20-40minuts of concentrating on something like computer code, it mostly goes away after an hour or two of sleep/nap if I don’t go over 20-40 minutes of such activities...

 

[Martin aka paused||M.E.]

That could be easily done. Anyone can buy a box of 10 urine dipslides online for around $30. Dipslide sellers are listed in this pdf file in this post. You can then hand out one dipslide to several of your healthy friends and family, and ask them to place the dipslide in their stream of urine for 3 mornings in a row. If any bacteria is seen to grow on the agar overnight, you have a positive result.

Dr Markov usually provides a new dipslide to use each day, but for reasons of economy, I suspect the same dipslide could be used for 3 days. I tried re-using the same dipslide for 3 days in a row, and I was able to get bacterial growth on it on the second or third day.

Dipslide instructions state to incubate overnight at 37°C, but I believe Dr Markov says it is OK to incubate a room temperature, which then makes things easier. And this paper indicates room temperature urine cultures work fine. So easy to test healthy controls.


I think @Nuno already tested himself (positive) and his mother and father (both negative).

My dipslide was positive too at room temperature. My doc says it’s normal because you have many bacteria in your urethra and it could be contamination.

 

[BrightCandle]

Dipslide instructions state to incubate overnight at 37°C, but I believe Dr Markov says it is OK to incubate a room temperature, which then makes things easier. And this paper indicates room temperature urine cultures work fine. So easy to test healthy controls.

Mine was positive at room temperature as well but it took 2 days. The ones I "cooked" using sous vide at 37C showed a lot more bacteria across more sites on the dipslide. Warmer is better and we know bacteria grows better at the right temperature but it definitely works at room temperature.

Which reminds me its been a few weeks I need to test if I have had an impact with cranberry tablets at 30,0000mg, expect a note on that in a day or two.