Staph vaccine to treat CFS??

[CaptainA]

I have started to notice a certain pattern in my responses to these vaccine injections: what I am finding is that on the day after the injection, my mood is bright and elevated, and in addition it feels like my ME/CFS has improved; my mind is clearer, and it seems like I am moving towards remission.

Wow, this is amazing news none the less. I'm wondering if the non - absorbed version will help sustain these effects.

 

[Hip]

Wow, this is amazing news none the less. I'm wondering if the non - absorbed version will help sustain these effects.

I was thinking the same thing myself. It's almost as if the vaccine ingredients need to be a little stronger or more long lasting, so as to extend this positive effect for a longer time.

Maybe as you say the non-absorbed vaccine will be longer lasting in its effect. I ordered some of the non-absorbed vaccine from rupharma.com on 7 April, and they said their shipping takes 7 to 14 days to arrive when sent from Russia, so I should have it soon.

 

[Andey]

I just took another dose of the vaccine a few days ago: I have now moved up to an 0.8 ml dose, which is getting close to the full 1.0 ml dose.

I have started to notice a certain pattern in my responses to these vaccine injections: what I am finding is that on the day after the injection, my mood is bright and elevated, and in addition it feels like my ME/CFS has improved; my mind is clearer, and it seems like I am moving towards remission.

However, that feeling only lasts for one day, and then by the second and subsequent days after the injection, my ME/CFS seems to return, and it remains that way for the rest of the week, until the next injection.

So there is some positive effect, but in general there does not yet seem to be any sustained improvements to my ME/CFS.

It would be miraculous if it works in weeks. Hard to undone something that happened for years in days.
So...looks like a really something really good is happing right now. )

 

[Helen]

It would be miraculous if it works in weeks

I recently talked to a ME-patient, who was offered to try the Staphypan vaccine. She told that it helped her significantly after 3 weeks (following the protocol in the study). Others , who were helped could have to wait up to 2 months before they knew if the treatment helped or not, according to her and a group of patients. This woman still takes the vaccine once a month and has lived a normal life since she began taking it. She went back to work until she was retired at 65. Before she had been bedridden for years.

Fingers crossed for you, @Hip, that the vaccine will make you free from symptoms of ME.

 

[Thomas]

This is a fascinating thread. Hopefully once there is a final agreed upon treatment outcome or protocol via our DIY patient population, that protocol and sources of obtaining the vaccines can be condensed into a one or two pager.

My ME was kickstarted by a vaccine so it would be interesting if a vaccine were to eventually cure it. What's life without a little irony!?

 

[Hip]

Hopefully once there is a final agreed upon treatment outcome or protocol via our DIY patient population, that protocol and sources of obtaining the vaccines can be condensed into a one or two pager.

If myself or anyone else gets a positive response from this Medgamal Staphylococcus toxoid vaccine, I will create a new thread with all the relevant info about obtaining and administering the vaccine summarized in one post.

 

[CaptainA]

@Hip so after repeated attempts I finally heard back from Prof. Schlievert and it isn't good. Here is the email I just got back

"The CDC has put a stop to our use of one of the vaccine components, even though it has no toxicity. They think that all staphylococcal enterotoxins, even if completely non-toxic, are select agents of bioterrorism, and thus I cannot use them. I would welcome any bioterrorist spreading this toxoid everywhere because all it would do is vaccinate people.

I have requested and exemption and am waiting. I have published extensively that this vaccine component is non-toxic and should be used."

So.....my first reaction is why not get the ME/CFS on the right side here and help get this exemption accepted. I'm thinking about some type of story in any type of press outlet that could put pressure on the dept. In turn, we may gain support from his dept. to use the vaccine for ME/CFS treatment. I think that the next email I send should be clear and to the point. Any ideas are welcome. I'm also think that we should double check that this vaccine is the same as the Staphyn Vac. I'm not completely versed in this field so any suggestions on specific questions would be welcome.

 

[Helen]

@CaptainA, do you know if Prof. Schlievert has contacted Prof. Gottfries? G. Gottfries would surely share his experiences and knowledge as they had to have an approval from the ethical committée at the local university hospital to be allowed to use the Staph vaccine for ME/CFS in a study.

 

[Hip]

@CaptainA
My God, there's always some stupid obstacle placed in front of progress in the ME/CFS community! Now anti-terrorist policy is getting in the way!

Anyway, it's fantastic that your persistence paid off, and you did finally get through to Prof Patrick Schlievert at Iowa University. At least we know the situation now with the new Iowa Staphylococcus toxoid vaccine.

The CDC has put a stop to our use of one of the vaccine components, even though it has no toxicity. They think that all staphylococcal enterotoxins, even if completely non-toxic, are select agents of bioterrorism, and thus I cannot use them

I wonder if the CDC is actually aware that toxoids are deactivated toxins? I might be an idea to write to the CDC, explaining the difference between toxins and toxoids, and explaining how this vaccine from Iowa University could quite possibly be a highly effective treatment for one third of the 17 million ME/CFS patients worldwide.

We could send a letter of enquiry first to the CDC, so that we can hear their story on this, and once we have a better understanding of what is going on at the CDC with regards the Iowa vaccine, we can then develop a strategy.

 

[panckage]

Ok so who has tried this so far? Hip has. @hvac14400 have you tried the vaccine yet? Anyone else?

I will be more than happy to contribute my body to science for this endeavor. There are a few caveats, however:
1) I live in Canada so I would say if vaccines are the same as prescription drugs then there is probably a 50% chance they will seize the package and thus I won't even get to try it
2) EMS or any fast shipping would almost certainly get seized. It would have to be sent by ordinary mail to maximize chance of success but that would mean maybe 30 days in the mail before I receive it assuming the shipping times are similiar to from China
3) it would really help my chance if success if they could put "dog medicine" or something else as the contents of the package maybe
4) I'm pretty brain foggy so I will need your help @Hip and @hvac14400 in order for me to figure out the details

What do you guys and gals think? Should I contribute my body to this experiment? I'm ok losing my money if the package gets intercepted

 

[CaptainA]

@CaptainA, do you know if Prof. Schlievert has contacted Prof. Gottfries? G. Gottfries would surely share his experiences and knowledge as they had to have an approval from the ethical committée at the local university hospital to be allowed to use the Staph vaccine for ME/CFS in a study.

I don't believe that he has spoken with Prof. Gottfries. I will say that when I mentioned ME/CFS and Gottfries that is when I got no response from is office. It was only when sent a quick email asking for an update that I got a response. I could attempt to bring it up.

 

[CaptainA]

We could send a letter of enquiry first to the CDC, so that we can hear their story on this, and once we have a better understanding of what is going on at the CDC with regards the Iowa vaccine, we can then develop a strategy.

Great idea. I think something simple could work. Something stating the research, why its NOT toxic, and then a request as to why/how they could consider this dangerous. Would anyone like to begin a draft

Also, we should get as many signatures as possible including Prof.s and Docs we know

 

[Biarritz13]

@CaptainA
We could send a letter of enquiry first to the CDC, so that we can hear their story on this, and once we have a better understanding of what is going on at the CDC with regards the Iowa vaccine, we can then develop a strategy.

Great idea. I think something simple could work. Something stating the research, why its NOT toxic, and then a request as to why/how they could consider this dangerous. Would anyone like to begin a draft

Also, we should get as many signatures as possible including Prof.s and Docs we know

I second the signatures. Maybe if an association is able take over this demand and make it global, it will have even more credits...

 

[Hip]

it would really help my chance if success if they could put "dog medicine" or something else as the contents of the package maybe

Funny you should mention dog medicine...

A veterinary vaccine for dogs called Staphage Lysate was mentioned briefly earlier in this thread. This vaccine contains staphylococcal antigens, which are one of the components found in the original Staphypan.

From one of Gottfries's studies:

Staphage Lysate (Delmont Laboratories, USA) has been shown in experiments to be a potent immune stimulant, especially on the T-lymphocytes.

The preparation has also been reported to induce cytokines, thereby promoting T-helper subclass 1 (Th1) cellular immunity.

This is of some interest, since the defence against infections is primarily said to be dependent on Th1-driven mechanisms. Furthermore, in laboratory animals, treatment with Staphage Lysate was found to provide nonspecific protection against other infectious agents.

Because these staphylococcal antigens are found in the original Staphypan vaccine, it's possible they are responsible (or partly responsible) for Staphypan's beneficial effects on ME/CFS.

ME/CFS doctor Ritchie Shoemaker was at one stage (and possibly still is) administering Staphage Lysate vaccine to humans, but he was sent a warning letter from the FDA, mainly though for not filling out the right paperwork (see here). Apparently the manufacturer of Staphage Lysate, Delmont Laboratories, do hold a licence to sell a version of Staphage Lysate intended for humans, but they only offer a dog version.

Interestingly, Shoemaker got his ME/CFS patients to administer this Staphage Lysate vaccine not by injection, but intranasally using a nasal spray (see here). I could not find much online about what benefits Shoemaker's patients got from Staphage Lysate, but that would be very interesting to know.


There is also a Russian Staphylococcus antifagin vaccine for humans made by www.biomedm.ru (available for sale in Russia here, here and here), which looks like this:

Russian Staphylococcus Antifagin Vaccine (front of box):

Russian Staphylococcus Antifagin Vaccine (back of box):

This Russian Staphylococcus antifagin vaccine is similar to Staphage Lysate: like Staphage Lysate, the Russian antifagin vaccine contains staphylococcal antigens, but does not contain any toxoids.

So if you want to try a staphylococcal antigen vaccine, there is a choice of Staphage Lysate (if you don't mind taking dog medicine), and the Russian Staphylococcus antifagin vaccine.



I have done nearly two months on the Russian Staphylococcus alpha toxoid vaccine by Medgamal, without noticing any significant improvements (apart from often feeling my ME/CFS symptom are abating just on the day after injecting the vaccine).

So at this stage, it is beginning to look like: (1) either I am a non-responder to the alpha toxoid vaccine — and remember that only one third of Gottfries's clinical trial patients got major improvements from Staphypan, and one third had no response at all; so it would not be unusual to be a non-responder; (2) or alpha toxoid is not the component of Staphypan that works for ME/CFS. I guess we won't know whether Medgamal's Staphylococcus alpha toxoid vaccine has benefits for ME/CFS until others try it.

Anyway, I am going to keep taking the Staphylococcus alpha toxoid vaccine for another two months or so. I have nearly finished the introductory 8 week schedule which requires one vaccine injection per week for 8 weeks (at slowly increasing dose levels). So from now on, my schedule involves taking just one full vaccine injection (1.0 ml) every four weeks, which is very easy to follow.

However, I am also now thinking in terms of trying out one of the staphylococcal antigen vaccines like Staphage Lysate, or the Russian Staphylococcus antifagin vaccine.

 

[Hip]

@panckage
I think rupharma use plain A4 sized flat envelopes to mail their drugs, to minimize the chances of custom's inspection. The instructions for ordering from rupharma the Russian Staphylococcus alpha toxoid vaccine by Medgamal are detailed in this post.

Note that there may be side effect risks involved in taking this vaccine.

 

[CaptainA]

I've written back to Prof. Schlievert and asked for outline for a possible letter we can send to the CDC. I'm thinking a change.org petition that sends a letter to a CDC contact for every signature would work. I've also made him aware of the CFS/ME research done on the vac.

 

[Hip]

Good stuff, @CaptainA.

 

[panckage]

One thing that keeps spinning around in my head, is why did it seemingly take the Gottfries crew to do the ingredient analysis of Staphypan when you would have thought that Berna Biotech would have had them readily available.

I think this is standard practice to ensure that that the product is as advertised. "Construct validity" I believe

 

[panckage]

Ok rupharma.comnow has the vaccine listed on their site:
http://rupharma.com/anatoxin-purified/
http://rupharma.com/anatoxin-adsorbed/

I notice it says that for storage it just needs to kept under 25C....

 

[Hip]

I notice it says that for storage it just needs to kept under 25C....

While I think the vaccine should be OK for a few weeks at room temperature 20ºC during shipping, once you receive it, you should keep in the fridge at a temperature between 2ºC and 8ºC.

In fact, Alexei from rupharma.com emailed me asking about the issue of refrigeration, and bringing up the point refrigeration will not be possible during transportation. Alexei was worried about this.

But I pointed him to the document I read on the thermostability of vaccines, which suggests it is OK to leave toxoid vaccines at room temperature for a few weeks. I told Alexei that from this document, it is reasonable to assume a toxoid vaccine will be undamaged during transit at room temperature.


That's great to have a page on their website though to buy the vaccine. It makes things easier.