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Staph vaccine to treat CFS??

Hip

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I was informed that the Russian vaccine is also available for sale in Hungary too, although in Hungary the pharmacies require a prescription (prescriptions are not normally asked for in the Ukraine and Russia, which is a big advantage).

Hungary is in the EU/EEA, so ME/CFS patients in Sweden might be able to import from Hungary (if they can get a prescription), as Swedish customs regulations allows medicine imports from EU/EEA countries.
 
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Ok, if it is available in Hungary then I think there is a good chance it is available in Lithuania. I'll let you know when I know.
 

Helen

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I was informed that the Russian vaccine is also available for sale in Hungary too, although in Hungary the pharmacies require a prescription (prescriptions are not normally asked for in the Ukraine and Russia, which is a big advantage).

Hungary is in the EU/EEA, so ME/CFS patients in Sweden might be able to import from Hungary (if they can get a prescription), as Swedish customs regulations allows medicine imports from EU/EEA countries.
Great job again, Hip. A year ago, I heard from a source that I trust, that there were/are ongoing discussions in EU that would probably lead to a change to the better for all EU-members. The regulations are proably going to be changed so that all EU-members may get medicins from prescriptions from a doctor in a foreign country delivered in their own country.
 

Hip

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In private conversation with @Helen just now, I have just realized that the Russian vaccine does not contain mercury, or any other preservative.

If you look at the Russian vaccine instructions leaflet (Google translated to English) posted here, it actually says "the product does not contain any preservatives or antibiotics".

So this is very good news for ME/CFS patients that are mercury-sensitive, as it means they could if they want take this vaccine.


I kind of assumed that the Russian vaccine would contain mercury, but in fact the Russian Staphylococcus toxoid vaccine seems to be mercury-free.
 

Hip

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In case anyone wants to see what the glass ampoules of the Russian Staphylococcus toxoid vaccine look like, here are some pictures I took of mine:

Russian Staphylococcus toxoid adsorbed vaccine: one of the 1 ml ampoules
Staphylococcus vaccine Medgamal 1.jpg



Russian Staphylococcus toxoid adsorbed vaccine: the box containing 10 x 1 ml ampoules
Staphylococcus vaccine Medgamal 2.jpg

The ampoules break open very easily and cleanly by applying a light force with your fingers on the neck near the blue dot. The ampoule contents are then drawn into a hypodermic syringe, ready for subcutaneous injection.

The slightly milky color of the vaccine I think is a good sign, because that milky color can be lost in vaccines which have been damaged due to freezing (see this article).

The box has a holographic security label presumably to help ensure authenticity:

Russian Staphylococcus toxoid adsorbed vaccine: the holographic security label (bottom right)
Staphylococcus vaccine Medgamal 3.jpg
 
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Hi Hip, count me in for 2 packets of the Russian vaccine.
I Russian acquaintance looks up the Russian manufacturer(Medgamal) and found that they were a long standing,
very reputable company.
I premume this may have already been done, but I have the intention of contacting the Rituximab trial team in Norway to make them aware of Staphypan and its efficacy before it was discontinued. The fact that it helped ,and it's possible action,may help them further in understanding the mechanics of CFS/ FIBROMYALGIA. On the surface it would seem that Staphypan works further upstream in the biology of this illness than Rituximab. Simplistically the theory that the B- lymphocytes are autoimmuning the blood vessel endothelium would seem to have been cut short by the Staphypan vaccine. A Staph vaccine is certainly a lot more appealing than a medicine that relies on wiping out B- Lymphocytes for its efficacy. Without looking too deeply it appears that both treatments have a similar success percentage( 2/3 approx.). What is of equal interest is the 1/3 non responders. Hopefully they are not just cut loose in the understanding of this illness.
I know that Estafiloide appears to be a dead end, but I have a relative in Rio who is still pursuing it.
Hip, can you ascertain how the Russian vaccine's active ingredients stack up against Staphypan's.
I do apologise for the disjointedness of this thread.
Finally I would like to reiterate the thanks to 'Hip' for his efforts, help and clarity.
 

Hip

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Hi Hip, count me in for 2 packets of the Russian vaccine.
Sure thing. I am probably going to wait a week or two before instigating the process with my Ukrainian contact of buying and shipping these vaccines to interested ME/CFS patients like yourself, just to give enough time for any other patients who may also be interested in buying to see this thread.

And in two weeks time, I will have been on the Russian vaccine for a month, and I hope by that time I will start to see health improvements, if I am a responder. So I may then be able to provide indication whether the vaccine is working.



Russian acquaintance looks up the Russian manufacturer (Medgamal) and found that they were a long standing, very reputable company.
Yes, that's impression I got. Some of Medgamal's history is found on this page of their website (I find the Google Chrome browser provides the best way to translate Russian webpages to English).



I premume this may have already been done, but I have the intention of contacting the Rituximab trial team in Norway to make them aware of Staphypan and its efficacy before it was discontinued. The fact that it helped ,and it's possible action,may help them further in understanding the mechanics of CFS/ FIBROMYALGIA. On the surface it would seem that Staphypan works further upstream in the biology of this illness than Rituximab. Simplistically the theory that the B- lymphocytes are autoimmuning the blood vessel endothelium would seem to have been cut short by the Staphypan vaccine.
That is a very good idea, @Arvan. It is quite possible that Fluge and Mella in Norway may not know about this Staphylococcus vaccine treatment of ME/CFS, so it's definitely worth contacting them.

@CaptainA told me that he recently spoke to Prof Jose Montoya in Stanford University, and asked him about the Staphylococcus toxoid treatment of ME/CFS, but Prof Montoya had not heard of it. So we cannot not assume that all ME/CFS researchers will be familiar with all ME/CFS treatments.

In terms of the possible autoimmune-modulating effects of the Staphypan vaccine, I spent a while looked into the physiological effects that the toxoids in the Staphypan vaccine have, and my hunch is that the enterotoxin B toxoid in the vaccine may be the one that is helping ME/CFS, through an immunomodulatory mechanism. Enterotoxin B binds to the CD28 receptor, and this CD28 receptor has been linked to autoimmune disease (CD28 controls differentiation of regulatory T-cells, which play a central role in maintaining immune self-tolerance).

The CD28 receptor super-agonist drug TGN1412 is being tested as a treatment for autoimmune diseases. But TGN1412 was also the drug in the 2006 Northwick Park Hospital London clinical trial disaster, in which several young men became very ill with organ failure. So activating the CD28 too much can be very dangerous. After this clinical trial disaster, this TGN1412 drug is now making a comeback, using doses 10 to 20 times less (and being renamed as TAB08).



Hip, can you ascertain how the Russian vaccine's active ingredients stack up against Staphypan's.
At the moment, I don't know whether all the toxoids known to be present in the Staphypan vaccine (namely Staphylococcus alpha toxin, enterotoxin A, enterotoxin B, enterotoxin C and toxic shock syndrome toxin 1) are also all present in the Russian vaccine.

It was this study by Zachrisson, Gottfries et al 2004 (full paper here) which determined the ingredients of the Staphypan vaccine. But I have no info as to which Staphylococcus toxoids are present in the Russian vaccine.

So the only thing we can do at the moment is try the Russian vaccine, and see if it helps ME/CFS and fibromyalgia as effectively as the original Staphypan vaccine. If it does, then that would indicate the ingredients are likely the same or very similar.
 
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Hip

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IMPORTANT NOTE:

This is one of those terrible brain fog moments, but I have just realized that there are two versions of the Russian Staphylococcus vaccine for sale: a normal version of the vaccine, and an adsorbed version.

On the Russian Staphylococcus toxoid vaccine product page on the Medgamal site, it describes the usage for the two versions of the vaccine:
Staphylococcal anatoxin purified adsorbed designed for people individuals at increased risk of disease (industrial and agricultural workers, and military personnel, the sick to be planned operations). Immunization is also required for the purpose of obtaining donor anti-staphylococcal anti-staphylococcal plasma and immunoglobulin.

Staphylococcal anatoxin purified liquid used for specific immunotherapy of adults and adolescents suffering from acute or chronic (in the acute phase), staphylococcal infection.
So the normal version is used when you have an actual Staphylococcus infection (and so possibly its immune-boosting effects are designed to be stronger); whereas the adsorbed version is used to boost immunity in those at risk for Staphylococcus infection, but don't actually have the infection.

Unfortunately when I looked at my boxes of vaccine, I realized I bought the adsorbed version of the Russian vaccine. At the moment I am trying to get more information about the difference between these two versions of the Russian vaccine, and which one is more appropriate for ME/CFS treatment.

Note that the Russian word for adsorbed is адсорбированный.
 
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Hip...would Prof Gottfries know which of the two types of vaccines would be the best one to use? I was thinking he might know which one would be closest to the one that he uses. Also it would be good for him to at least know that there are two different version since he is trying to get permission to import it and test it out. Want to make sure he gets the right one.
 

Hip

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Hip...would Prof Gottfries know which of the two types of vaccines would be the best one to use? I was thinking he might know which one would be closest to the one that he uses.
Prof Gottfries said that he thinks the normal version of the Russian vaccine is the closest to the original Staphypan vaccine. So I think it is probably best to buy this normal version.

The normal version of the Russian vaccine made by Medgamal is called:
Анатоксин стафилококковый очищенный жидкий
Staphylococcal anatoxin purified liquid

The other version of the Russian vaccine made by Medgamal, the adsorbed version (which possibly may not be as good for ME/CFS purposes), is called:
Анатоксин стафилококковый очищенный адсорбированный
Staphylococcal anatoxin purified adsorbed

Since I have already bought the adsorbed version, I am going to continue with that for the moment.


Some Russian – English translations:
Стафилококковый = staphylococcal
Стафилококк = staphylococcus
Анатоксин = anatoxin
Токсоид = toxoid
Адсорбированный = adsorbed
Очищенный = purified
Жидкий = liquid
Медгамал = Medgamal (the vaccine manufacturer)

Note that the English words "anatoxin" and "toxoid" are synonyms, and mean the same thing. Russians tend to use the term anatoxin (анатоксин) much more than the term toxoid (токсоид).
 
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Hip

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Local reactions to the Staphylococcus toxoid vaccine at the site of injection

Note that is it not uncommon to have local reactions at the site of injection. Here is a picture I took of the local reaction that appeared after taking the second weekly dose (0.2 ml) of the Russian vaccine:

Local reaction on my belly the day after the 0.2 ml injection
The red area is about 5 cm in diameter

Injection 0.2 ml local reaction — 4 March 2018.jpg



The same local reaction shown 4 days later, now subsided a lot
Injection 0.2 ml local reaction — 8 March 2018.jpg


Prof Gottfries says that if the local reaction is larger than the size of "a child's hand palm" (a child's palm is around 6 cm across I think), then in his clinic, they would not increase the vaccine dose at the next injection the following week, but would keep at the same dose level for two weeks in a row.

In my case, the size of my local reaction was around 5 cm across, which is just slightly smaller than a child's palm, so it should be OK for me to move up on schedule to the next dose level for my next injection.

The dose levels used by Prof Gottfries for each weekly injection are detailed in this earlier post.


The instructions leaflet for the Russian vaccine mentions that there can be local reactions of redness and slight pain at the injection site, disappearing after 1 or 2 days. These instructions also mention that there can be mild weakness, malaise, and occasionally an increased body temperature to 37.5°C.

However, for me my local reaction did not cause any pain or irritation, and I wouldn't have been aware of my local reaction, had I not noticed the red area while taking a bath.

I also have not felt any weakness or malaise from my injections. I can be sensitive to medications, because the virus that triggered my ME/CFS also rapidly precipitated a number of nasty chronic mental symptoms, such as generalized anxiety disorder, anhedonia, blunted affect, and some mild psychosis. These mental symptoms are under control these days, but I find that some medications can bring these unpleasant mental symptoms back.

However, I am pleased to report that this Russian Staphylococcus toxoid vaccine has not worsened my mental state (except for the first week, where I felt a little more tired than usual, but nothing much more than that); on the contrary, if anything I am currently finding my mood and mental state feels better than normal.

Thus so far I am finding this Russian vaccine is not only very well-tolerated, but if anything is improving my mood.



The hairy body? Well, what do you expect: 23andme found I am 3% Neanderthal — higher than average!
 
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Hip

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I think you mean mm, not cm, @Hip!

What age child does Prof Gottfries mean? They vary a lot!
Thanks, I have corrected my post. From looking online, I found that 6 cm across is a typical size of 8 year old child's palm.

So I think a local reaction of around 6 cm in diameter or larger is the threshold for when you should stay at the same dose level.
 
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Mary

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Hi @Hip - thanks for all the additional information! I contacted DHL re importing medicines into the U.S., and it sounded pretty much like what you posted before, sort of a grey area. It's possible to do, but it sounds sort of complicated, I didn't write it all down but if I get to the point where I do want to try it, I'll get the specifics.
 

Hip

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The pharmacy in Hungary that was reported to sell the Russian Staphylococcus toxoid vaccine (but you need a prescription) is this one:

Pharmacy name: BENU Gyógyszertár
Pharmacy address: 1111 Budapest, Karinthy F. út 2
Pharmacy email: szentimre@benugyogyszertar.hu
Pharmacy website: here.

Picture of the pharmacy on Google Streetview here.
 
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The pharmacy in Hungary that was reported to sell the Russian Staphylococcus toxoid vaccine (but you need a prescription) is this one:

Pharmacy name: BENU Gyógyszertár
Pharmacy address: 1111 Budapest, Karinthy F. út 2
Pharmacy email: szentimre@benugyogyszertar.hu
Pharmacy website: here.

Picture of the pharmacy on Google Streetview here.
Good find. I did some digging and it seems that getting anything from Hungary would be near impossible. Even if you were in country, they have some pretty restrictive policies it seems. I'm currently looking at Slovakia and Iceland. Will post any findings here.
 

Hip

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@CaptainA
For ME/CFS patients in Sweden such as @Helen and @Ninan, a source for this Russian vaccine in one the European Economic Area (EEA) countries may make import into Sweden easier, since with certain stipulations, Sweden allows import of medications for personal use from another EEA country, but not from countries outside the EEA.

So if you can find anything in Slovakia or Iceland, that will be great.

Unfortunately EEA countries will almost certainly all require a prescription, whereas in Russia and the Ukraine, although prescriptions for pharmaceutical products are technically required, they are in practice rarely asked for by the pharmacy.
 
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hvac14400

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@Hip

hi, Neanderthal, :rofl:

An interesting study:

Correction of immune response using purified staphylococcal toxoid and likopid in the secondary immunodeficiency induced by Coxsackie virus B3

This study indicates that the immunomodulator drug Licopid was always able to correct the secondary (acquired) immunodeficiency caused by coxsackievirus B3 infection.

By contrast, the study authors found that Staphylococcal toxoid was sometimes able to correct this secondary immunodeficiency, but sometimes it made it worse, depending on the experimental set-up the authors used.
so haven't you used licopid yet? coz i hate needles : \

I have tried three different Russian immunomodulators before (arbidol, tilorone and cycloferon), and did not notice any benefits, but those three were interferon boosters.
some time ago i was recommended by immunologist to take a cycle of licopid or amixin (tilorone), i bought the last one, swallowed 1 tablet and my body temperature started to rise constantly. in like couple hours i got from 37 to 40 degrees celsius and temperature wasn't stopping there, that was scary as f#ck. so i got rid of this sh#t asap, throwing almost full package in the trash, lol.