Staph vaccine to treat CFS??

[Hip]

i can finally say, that vaccine is in fact working

Very pleased to hear that. It is great to hear about a positive result from the vaccine, where a classic ME/CFS symptom like PEM has ben reduced by the vaccine.

Do you think these improvements in your PEM come from the Medgamal Staphylococcus toxoid vaccine alone, or could the improvements be due to a combination of this toxoid vaccine, plus the two Staphylococcus cell wall part vaccines you are taking (if you are still taking these)?

How about your sleep? Earlier you said that the vaccine was making sleep slightly more revitalizing. Non-refreshing sleep is one of the primary symptoms of ME/CFS, so anything that can help improve non-refreshing sleep is definitely helping ME/CFS.

so 2ml is probably minimum effective dose for cfs, for average ppl, i think probably somebody will need more, somebody less.
and maybe those non-responders in prof G studies just needed higher dose too, because of their immunity is too weak to begin with, or there are some other "features" in them.

That's a good point. Maybe the non-responders in Gottfries's studies would have seen some benefits if they went up to a higher dose of 2.0 ml of Staphypan.

24h post injection status report:
- no any pain
- no any redness

That's interesting. I am still getting a red area around 5 cm in diameter as a local reaction at the injection site, even after nearly 4 months of taking the vaccine. But there is no pain or discomfort with my local reactions.

I think I will try injecting two 1.0 ml ampoules of the Medgamal Staphylococcus toxoid vaccine next time; but I will inject each 1.0 ml ampoule at a different site on my belly, because if I inject at the same site, the local reaction will probably be huge.

 

[panckage]

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).

Hmm... What I got from RUPHARMA appears to be perfectly clear. Hvac's was clear to in his pic as well

I notice that it looks like you have the adsorbed version in the picture. The link posted also describes adsorbed vaccines related to the milky appearance.

Should the regular non-adsorbed vaccine be milky too?

so 2ml is probably minimum effective dose for cfs, for average ppl, i think probably somebody will need more, somebody less.

This is something that I have been wondering about. The 2nd double blind trial was all women. It sounds like the reasoning was that since the vast majority of fibro cases were women, the researchers used only women in the study to prevent extra variables. Women are usually smaller than men and therefore usually require less medicine.

I am 210lbs with a healthy bmi and I suspect some of the women in the study were only about half my weigh

 

[Hip]

Should the regular non-adsorbed vaccine be milky too?

I bought both versions of the Medgamal Staphylococcus toxoid vaccine: the absorbed vaccine is a milky color, and the non-adsorbed is clear.

 

[hvac14400]

I am 210lbs with a healthy bmi and I suspect some of the women in the study were only about half my weigh

damn - i forgot already when i was 220 and more - those happy days are gone now, am rollin at miserably 192 nowadays

this vacc is surely not very suitable for a monthly injections - too much volume, too much sides, here is my reaction after 8 days:

http://posoni.ru/45.JPG
http://posoni.ru/46.JPG

that bump is around 1 cm in size (at max) and almost invisible without stretching the skin, but will i enjoy gettin that on a regular basis? don't think so

 

[panckage]

I made a spreadsheet on google docs where we can keep track of our results. As far as I can find 5 of us are currently on this treatment @Hip, @hvac14400, @Tinnybell, @ECAsson, and myself

https://docs.google.com/spreadsheets/d/1ChpEoLgVUwJq_S-xIUX2aUI2slDi-P_5thh7L6XGcVs/edit?usp=sharing

Let me know what you think of the format. Anything can be changed! Currently it says that in order to fill it out you need to take the vaccine for 2 months. Is this a good amount of time?

Oh and if anyone wants to edit the spreadsheet just send me a request

 

[hvac14400]

i hate to be tracked


as about format - there's no "severity" info for example, which is very important to take into account i think.
but why you doing this anyway - you are not a prof G and there is too little of "guinea pigs" here : )

 

[Biarritz13]

hey.
i can finally say, that vaccine is in fact working
2 workouts in the row i have significantly reduced pem-s - like 50% or more. yes i do still get pem-ed, and i don't saying that this vacc is a replacement/analogue to berna's one, but you can't say it doesn't work at all.
read the manual carefully - the last scheduled injection for donors is TWO ampoules, not single.
you can start this vacc very fast and very easy - first week 1ml, second one 1ml, third and the last week 2ml - and that's it.

so 2ml is probably minimum effective dose for cfs, for average ppl, i think probably somebody will need more, somebody less.
and maybe those non-responders in prof G studies just needed higher dose too, because of their immunity is too weak to begin with, or there are some other "features" in them.

i'll try 3ml next time, if after a month am not eliminate pem-s completely.

Hi hvac,

It's great to hear that this vaccin is finally working!

Did you share this with Prof. Gottfries?

 

[Ninan]

Great idea @panckage Interesting to see how ppl respond. Maybe add severity as @hvac14400 suggested, and diagnosis? ME/CFS (consensus criteria), CFS (other criteria), fibro. And duration of illness.

 

[hvac14400]

Hi hvac,
It's great to hear that this vaccin is finally working!
Did you share this with Prof. Gottfries?

no - am not connected with him in any way.
plus am not "cured" fully yet - still got pem-ed regularly, so maybe this is just temporary relief, as with many other drugs/substances that i tried in the past, when their effect dropped down to zero in a couple of weeks.
so nothing to share at this time i think.

and lately i got an idea, that maybe something besides cfs hindering my recovery - like my chronically inflamed kidneys for example. coz one day i can feel 100% healthy, then next day boom - very degraded state for 2-5 days in a row, then boom - healthy again.

 

[panckage]

as about format - there's no "severity" info for example, which is very important to take into account i think.

Maybe add severity as @hvac14400 suggested, and diagnosis? ME/CFS (consensus criteria), CFS (other criteria), fibro. And duration of illness.

Sure we can do all this @Ninan if I remember correctly severity is important to you as the safety hasn't been ascertained on severe patients (i am assuming that patients who couldn't make it to the clinic were not included in the trials... But maybe I am wrong?). Maybe do BEFORE and AFTER ratings using this as a common scale?
http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

For the other things suggested maybe just add a column to put a hyperlink to anything else a subject wants to add?

I don't really want too much because this is far from scientific... I just wanted something where we could keep track off our basic results. Until I did this I had no idea how many people have tried this. Hoping I didn't miss anybody

And again if anyone wants to change it themselves just send me a request!

 

[hvac14400]

if I remember correctly severity is important to you as the safety hasn't been ascertained on severe patients

safty is one reason, but i was thinkin bout severity from complete different point of view - like it can influence results that one can expect to get from this vacc. say low severity - small improvements (or nothing at all ), high severity - considerable recovery.
sorta kinda like that.

 

[Biarritz13]

no - am not connected with him in any way.
plus am not "cured" fully yet - still got pem-ed regularly, so maybe this is just temporary relief, as with many other drugs/substances that i tried in the past, when their effect dropped down to zero in a couple of weeks.
so nothing to share at this time i think.

and lately i got an idea, that maybe something besides cfs hindering my recovery - like my chronically inflamed kidneys for example. coz one day i can feel 100% healthy, then next day boom - very degraded state for 2-5 days in a row, then boom - healthy again.

You're not cured (yet I hope) but still it's a reaction that I think of interest for him.

Anyway, do you feel 100% healthy at home when resting or even when doing some activities?

 

[hvac14400]

Anyway, do you feel 100% healthy at home when resting or even when doing some activities?

yep, i feel that from time to time, and even after working my ass out in the gym too (which is irrational at first sight ).
but i remember long time ago i was gettin the same feelings while overdosing L-carnitine, without any vaccine.
plus i got something like that in a couple of weeks while starting folic acid, or Phenotropil - all that was short term only.

so it's hard to tell what's going on here and why.

 

[Biarritz13]

yep, i feel that from time to time, and even after working my ass out in the gym too (which is irrational at first sight ).
but i remember long time ago i was gettin the same feelings while overdosing L-carnitine, without any vaccine.
plus i got something like that in a couple of weeks while starting folic acid, or Phenotropil - all that was short term only.

so it's hard to tell what's going on here and why.

So Except of this experience this L-carnitine, this feeling is new thanks to the vaccine?

Prof Gottfries will surely be interested in this.

 

[hvac14400]

So Except of this experience this L-carnitine, this feeling is new thanks to the vaccine?

yes. am not taking carnitine or anything else from what i was talkin above currently.
but this vacc is very different formulation from that Berna stuff, so maybe it shouldn't even work at all for cfs in the first place.

 

[Biarritz13]

yes. am not taking carnitine or anything else from what i was talkin above currently.
but this vacc is very different formulation from that Berna stuff, so maybe it shouldn't even work at all for cfs in the first place.

But it's "works" on you, it's a great step!

 

[Ninan]

yes. am not taking carnitine or anything else from what i was talkin above currently.
but this vacc is very different formulation from that Berna stuff, so maybe it shouldn't even work at all for cfs in the first place.

What are the differences exactly? The new one contains only the toxine, no cell walls and there was something else in Stapyphan too, right?

 

[hvac14400]

But it's "works" on you, it's a great step!

it "kinda" works - i got unstable/unreliable results, so it's not what i want anyway. maybe i need more time, maybe not - who knows.

The new one contains only the toxine, no cell walls and there was something else in Stapyphan too, right?

correct - Medgamal's vaccine contains only alpha-toxin Staphilococcus aureus in inactivated form an no any other toxins, antigens or cell wall components, while Berna's one contains that and a bunch of other stuff, as was shown in prof G reports.

 

[panckage]

while Berna's one contains that and a bunch of other stuff, as was shown in prof G reports.

I wonder if Berna's listed all the ingredients that Gottfries found? I tried to find the official ingredient list on the internet but have been unable to find anything useful

 

[CaptainA]

I wonder if Berna's listed all the ingredients that Gottfries found? I tried to find the official ingredient list on the internet but have been unable to find anything useful

There is a list of what the original staphyen vaccine had in it somewhere on this thread that is now 25 pages deep. @Hip do you have that handy by chance?