Is there anyone close to Dr Gottfries that can update us on his thoughts and if he is able to get the Russian Staph Toxoid Vac and test it?
Prof Gottfries said he will keep me updated regarding his efforts to import the Russian vaccine into Sweden and test it, so I will post this info when I get it. I am guessing it will be some months, as bureaucracy is involved.
@Ninan kindly put me in touch with an ME/CFS patient in Sweden who did very well on the original Staphypan® Staphylococcus toxoid vaccine. This patient said she started to feel the first inklings of improvements after 2 weeks taking the vaccine, with the full benefits taking 3 or 4 months to manifest. I heard a similar story from another patient in Sweden.
So if I am a responder, I expect I may begin to feel some improvements in ME/CFS symptoms after around 2 weeks taking the vaccine, but will not see the full benefits until 3 or 4 months from now.
In rare cases, it can take up to 6 months before the benefits appear.
It has been around one week since I started taking the Russian vaccine, and I have been feeling a little more tired than normal, and needing more sleep than normal. I also had some increased levels of the ME/CFS emotional sensitivity symptom for two days after my first vaccine injection, but this passed (and may have just been coincidence). Other than that, I have not observed any other changes as yet.
Getting Hold of the Russian Staphylococcus Toxoid Vaccine
This vaccine is available to buy at an online international Russian pharmacy: adsorbed version
here (recommended), non-adsorbed version
here (not recommended, Prof Gottfries found it is weaker than the absorbed).
Law On Importing Medications For Personal Use
Before you go ahead, please check that it is legal to import medicines for personal use in your own country. It is legal to import medicines for your own use in the UK and Australia, but not in Canada (unless you personally carry the medicine across the Canadian border). In the US, it is legal to import medicines for personal use if these medicines are not available in the US.
How Many Boxes of Vaccine Are Required?
You may just need one box of vaccine, if you just want to initially test whether the vaccine works for you or not. One box will last for 5 to 8 months, depending on your methods of administration (more details on these methods below). Five months should be enough time to see whether the vaccine works for you or not; and eight months is definitely enough time.
Vaccine Dosage Protocol
When you take the Staphylococcus toxoid vaccine on a regular basis, one 1 ml ampoule of the vaccine is injected subcutaneously every 4 weeks. So one box of the Russian Staphylococcus toxoid vaccine, which contains 10 x 1 ml ampoules, will last for roughly 10 months.
However, in the first introductory 8 weeks of taking the vaccine, slightly more vaccine is used. Here is the introductory protocol used by Prof Gottfries in his
clinical trial of the Staphypan® Staphylococcus toxoid vaccine for ME/CFS and fibromyalgia patients:
Gottfries's protocol: Doses for Staphypan vaccine injection in the introductory first eight weeks:
Week 1: one injection of 0.1 ml of vaccine
Week 2: one injection of 0.2 ml of vaccine
Week 3: one injection of 0.3 ml of vaccine
Week 4: one injection of 0.4 ml of vaccine
Week 5: one injection of 0.6 ml of vaccine
Week 6: one injection of 0.8 ml of vaccine
Week 7: one injection of 0.9 ml of vaccine
Week 8: one injection of 1.0 ml of vaccine
When the introductory first eight weeks are complete, thereafter one injection of 1.0 ml of vaccine is given every 4 weeks on an indefinite basis (if this vaccine works for you, then you need to take it indefinitely, else your ME/CFS symptoms will return).
Note that each ampoule of the Staphypan® vaccine contains 1 ml, as does each ampoule of the Russian vaccine.
It is important to follow these gradually increasing doses.
@Andey also gave me the warning that in the instruction for the vaccine, it says you should never inject full 1 ml ampule initially, as if you have a significant Staphylococcus infection in your body, you could have a major problem if you did this, as your immune system could respond too fiercely too quickly.
Methods Of Administration: Bacteriostatic Water Method
The following details a method I devised myself to help reduce the number of vaccine ampoules used in the introductory first 8 weeks of taking the vaccine.
In principle, you would use up eight ampoules of the Russian vaccine in the introductory first 8 weeks, because even though you only use a fraction of the ampoule for each injection (for example, on the first week you only inject 0.1 ml out of the 1 ml in the ampoule), you have to throw away the rest of the ampoule after breaking it open, because it loses sterility.
But in order not to be so wasteful, what I did was buy a 10 ml bottle of Hospira bacteriostatic water, and I added one 1 ml ampoule of the vaccine into that bottle. Hospira bacteriostatic water contains a preservative which keeps the bottle contents sterile for around 28 days after first using the bottle (especially if stored in the fridge).
Then using a sterile needle and syringe I just draw out from this bottle of bacteriostatic water/vaccine mixture the appropriate dose for each week of the first 4 introductory weeks (drawing out 1.1 ml of the mixture gives me 0.1 ml of vaccine, drawing out 2.2 ml of mixture gives me 0.2 ml of vaccine, etc). That way I make one ampoule last for the first 4 weeks of the introductory protocol, and can thus save on 3 ampoules.
So using my bacteriostatic water method, you only need 5 ampoules of vaccine to cover the introductory 8 week protocol. Then the remaining 5 ampoules in the box will last you around 6 more months. That is more than enough time to test whether the vaccine is going to work for you or not.
I assume my bacteriostatic water method is safe, and will not be contaminated by bacteria (and that the bacteriostatic water will not affect the vaccine). Hospira say that their bacteriostatic water is good for 28 days once the bottle is first used. Bacteriostatic water is usually used by body-builders when they want to reconstitute dried (lyophilized) peptides or hormones for injection. In the US you can buy bacteriostatic water
here; in the UK,
here.
Note that bottles of bacteriostatic water are never physically opened; to add or take of liquid from the bottle, you use a sterile hypodermic needle and syringe which you push through the rubber top part of the bottle. To see how this is done, check
this video. If you are drawing liquid from the bacteriostatic water bottle, it is a good idea to first inject some air into the bacteriostatic water bottle (as shown in the video), as this creates pressure inside the bottle, making it easier to draw out the liquid.
If you've had no previous experience using bacteriostatic water, this method may not be a good idea for you, unless you are prepared to go up the learning curve. I already learnt all about it previously, as I have experimented with a number of body-builder's injectable peptides and hormones that require use of bacteriostatic water.
Note that to be diligent, you want to sterilize the rubber top of the bacteriostatic water bottle with disinfectant alcohol (70% isopropyl alcohol + 30% water mix) before you push the needle through the rubber. This is not obligatory, but it is supposed to help keep the bacteriostatic water sterile.
Even if you don't use the bacteriostatic water method, and so will use 8 vaccine ampoules for the first 8 weeks, and then the remaining 2 ampoules cover the three months that follow, that still gives you a total of nearly 5 months on the vaccine. This should be enough time to gauge whether the vaccine is working for you or not.
So whether you use this bacteriostatic water method or not, one box of 10 ampoules should suffice to test to see whether the vaccine works.
EDIT: Because the Russian adsorbed Staphylococcus vaccine is weaker than the original Staphypan vaccine used by Prof Gottfries, once I titrated up to the full 1 ml dose, I found I had to inject this dose once every 10 days to maintain the benefits for my ME/CFS. Thus you will use up the Russian vaccine faster than Staphypan, which Gottfries injects once every 3 to 4 weeks.
So if you are not using the bacteriostatic water method, you may need two boxes of the Russian vaccine (20 x 1 ml vials in total) to conduct this experiment.
How to Perform a Subcutaneous Injection
To open a vaccine ampoule, you snap it open by the dot on the neck, as shown in
this video.
In order to give yourself a subcutaneous injection (the belly area is good, 1 or 2 inches left or right of you belly button), see the instructions in
this article. Basically, pinch up some belly skin into a mound, and subcutaneously inject into the mound of skin.
For injection, I use very thin
30 gauge needles (outer diameter 0.3 mm) which are ½ long, and
2 ml plastic syringes.
It's usually a good idea to inject a 1 ml volume of liquid slowly over a period of 60 seconds or so. What I do is squeeze in around 20% of the liquid, then wait for 15 seconds, and then squeeze in another 20%, etc, until the whole 1 ml is injected.
Checking Your Fridge Temperature
By the way, you may want to check your fridge temperature with a thermometer when storing the vaccine. You want to store at a nice low temperature of around 5ºC. Some parts of the fridge are colder than others. The vaccine instructions say it should be stored between 2ºC and 8ºC. Some fridges may be on a low power setting, and so will be at too high a temperature for safe storage of the vaccine. I was surprised to find that the temperature in the door shelves of my fridge was as high as 14ºC. But now I have turned my fridge up to max power, to keep it cool. Note that under no circumstances should you freeze the vaccine.
