Staph vaccine to treat CFS??

[Allyson]

Ive just come across this thread after a search for staph infection.
I visited Dr Myhill last week for a consultationn and she felt that my nose bleeds and gritty/dry eyes with regular styes and lung infections could all have been caused by staph infection. She prescribed Fucidin ointment for up my nose and on my eyelids (although bizzrely it says on the pack do not put near eyes or internally)
She mentioned this research into the vaccine and said that the research had been halted due to funding issues and had never been restarted but that it was very positive research. She didnt take a swab to see if it was Staph, but i would have thought that if it was a big issue especially internally some cream isnt going to help much in the long run.
This research looks really interesting and very promising but i dont know where to go with this now. Any ideas?

Coincidentally Justy the genticist asked me about nosebleeds

easy bruising and bleeding and slow wound healing are common symptom of EDS

I have had nosebleeds for years but never made any connections.

the gritty eyes - i have heard of that as a common ME symptom - like sandy grit - sleep - in the eyes - i have had it every morning for years now - i think due to dehydration maybe at a guess?

my nose bleeds go back at least 20 years as i remeber thinking they were due to insulation we had fitted then but they persisted despite change of house to one woith natural seaweed insulation

they are occasionally heavy but almost always there as a constant light bleed

hope this helps some

 

[Helen]

Anyone know any further news on this? It sounded interesting.

Hi,
I have an appointment with Prof. Gottfries ( my first one) in June, so I hope to be back here with some information after that.

Justy,
Lack of vitamin A might also cause nose bleeding. People with a low thyroid are more prone to this deficiency because they can´t convert betacarotene to vitamin A. Maybe you already knew this, but just for sure.

 

[Snow Leopard]

Several papers not yet mentioned in this thread:

The first paper from 1998:

Eur J Pain. 1998;2(2):133-142.
Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome.

Andersson M, Bagby JR, Dyrehag L, Gottfries C.
Source

Pain Unit, Kungälv Hospital, Sweden
Abstract

Positive results of pilot studies of the effect of staphylococcus toxoid vaccine in patients with fibromyalgia and chronic fatigue syndrome were the incitement to the present, placebo-controlled study. It included 28 patients who fulfilled the criteria for both fibromyalgia and chronic fatigue syndrome. The effect of vaccination with a staphylococcus toxoid was compared with the effect of injections of sterile water. Psychometric assessment was made using 15 items from the comprehensive psychopathological rating scale (CPRS), Zung's self-rating depression scale and clinical global impressions (CGI). The visual analogue scale (VAS) was used to measure pain levels, and a hand-held electronic pressure algometer was used to measure pressure pain thresholds. Significant improvement was seen in seven of the 15 CPRS items in the vaccine group when pretreatment values were compared to post-treatment values. In CPRS <<fatiguability>>, there were significant intergroup differences, and in CPRS <<pain>> intergroup differences bordered on significance. There was no significant improvement in CPRS items in the placebo group. Clinical global impressions showed significant improvement in the vaccine-treated group, and VAS did so in both groups. In a follow-up study of 23 patients, the vaccine treatment was continued for 2-6 years. Fifty percent were rehabilitated successfully and resumed half-time or full-time work. The results of this study support the authors>> hypothesis that treatment with staphylococcus toxoid may be a fruitful strategy in patients with fibromyalgia and chronic fatigue syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/10700309
Unfortunately, the full version does not seem to be available online at the moment.

Second paper:

ABSTRACT
Background
In previous clinical double blind investigations a significant effect is recorded in patients
with fibromyalgia and/or chronic fatigue syndrome when treated with a staphylococcus
vaccine. The aim of this study is to report long-term efficacy and safety of this
immunotherapy.
Methods
One hundred and sixty patients with fibromyalgia and chronic fatigue syndrome who
had previously participated in vaccine treatment studies were continuously observed
during one year in a follow up study. At inclusion mean age was 53±11 years and mean
treatment time 22±10 months. In a subgroup of 97 younger patients (48±10 years)
with a mean treatment time of 50.4±17.8 months a Principal Components Analysis
(PCA) was performed.
The patients were on immunotherapy by a staphylococcus vaccine administered
subcutaneously in a dose of 1 mL every 3rd to 4th week. Medically educated and trained
staff using the rating scale CPRS-15 evaluated efficacy. Safety was evaluated
continuously.
Results
Ratings showed improvement from start of treatment and further improvement was
recorded during the follow-up period. The total mean rating CPRS-15 score was
reduced by more than 50 %. Five items (Concentration difficulties, Failing memory,
Irritability, Sadness and Autonomic disturbances) had mean levels below one at the
time of the last rating, indicating that these symptoms on a group level were within the
range of normality. The PCA also indicated improvement in the subgroup of 97 middleaged
patients. Adverse events were few and the adherence to the treatment was
surprisingly fine. During the observation period of one year 14% withdrew from treatment.
Conclusions
The result was considered impressive and in view of the lack of effective treatment in
fibromyalgia and chronic fatigue syndrome the results are of interest but need to be
confirmed.

http://www.iacfsme.org/Portals/0/pdf/Gottfries Dec09 168-183(2).pdf

The results look interesting, but the lack of replication seems to be due to the product being relatively unavailable, due to low sales (and resulting low scale/expensive production using decades old methods) and was subsequently discontinued in 2005. A few patients were allergic to the preservative too, but that would be eliminated with the development of a new product. But it seems to be a catch-22, the drug company doesn't want to bother as they don't consider there to be a market, but there won't be a market unless there were more trials...

 

[jeffrez]

Yes, please! Would definitely try this. Wouldn't it suck if something that could really help a ton of us was just simply unavailable b/c the manufacturer wasn't making enough profit from it? Argh.

 

[Tammy]

I couldn't read all the information on this........too long for me right now, but why did they pick that particular vaccine in the first place? I suspect that whatever the immune system is doing in response to the vaccination could be improving symptoms...........like whenever I get a cold (which is not very often) my immune system kicks in does its thing and I feel better ( my me/cfs symptoms) and I mean significantly better. Another member said when she had a sinus infection, her me/cfs symptoms were better. When my body isn't fighting an infection I go back to my usual symptoms. I would be more impressed if the vaccine was having a permanent affect but the study showed that it had be continued to prevent relapse which is OK I guess...........I'm wondering if eventually it will have a lasting affect? I can't remember right now the particular vaccine that has been used for years in integrative medicine to help some conditions but the concept is not new.

 

[Helen]

The results look interesting, but the lack of replication seems to be due to the product being relatively unavailable, due to low sales (and resulting low scale/expensive production using decades old methods) and was subsequently discontinued in 2005. A few patients were allergic to the preservative too, but that would be eliminated with the development of a new product. But it seems to be a catch-22, the drug company doesn't want to bother as they don't consider there to be a market, but there won't be a market unless there were more trials...

The production of the Staph vaccine was shut down as the preservative was thimerosal (mercury) that some people couldn´t handle. I don´t know If it was an allergic or toxic reaction they showed up with. I know people who were offered a trial with the vaccine but as they already had had severe reactions to amalgam/mercury fillings they were excluded when this was known
The company claimed that it should have been too expensive for them to change the production and exclude thimerosal.
The doctors who had been working with the vaccine, one of them a ME/CFS patient using the vaccine himself , tried to start a production but never succeeded. Too long way today, and too much money needed.

 

[Helen]

I couldn't read all the information on this........too long for me right now, but why did they pick that particular vaccine in the first place? ....

This Staph vaccine was rather commonly used from the 50ths for children with more and/or severe infections than normal. It was seen as helpful. One of the doctors at the ME/CFS clinic who got sick after a flue tried the vaccine and got much better. He has been able to work full-time.

It was recently summarized as decreasing severity of symptoms with 50% among one third of people who got the vaccine.

Too bad this vaccine hasn´t been developed and produced.

 

[Tammy]

This Staph vaccine was rather commonly used from the 50ths for children with more and/or severe infections than normal. @ Helen...... Do you mean specifically staph infection or other various infections as well?

 

[Helen]

@Tammy
I was told that it was not specifically staph infections (not mentioned at all) but other infections like colds and similar.

 

[Tammy]

I'm still trying to figure out how this vaccine thing started?.............I mean what was the reasoning behind whoever started this thing. What gave someone the idea that the staph vaccine might help with other conditions? I am just curious as to the line of reasoning............the physiology behind it. I mean if this is truly helping some with me/cfs.......wouldn't knowing the theory behind it......be helpful perhaps for research? Is this favorable response to the vaccine.....along the same lines as what happens to some of us when we get an infection? Our immune systems are responding true a trigger.......whether it be a vaccine, infection, etc..........and as a result of whatever happens in that response process........our me/cfs symptoms are better. (only speaking for some of us)......I know this isn't the case for everyone with CFS. I remain interested in why this is happening.

 

[Helen]

I'm still trying to figure out how this vaccine thing started?.............I mean what was the reasoning behind whoever started this thing. What warranted someone to come to the conclusion that a staph vaccine might help with other conditions? I am just curious as to the line of reasoning............the physiology behind it.

I suppose there is a discussion and hypothesis, that you -and me- would like to see, in the studies presented by the researching doctors. Sorry, I don´t have access to the full articles. Maybe someone is able to find out more, as I think this is very interesting as a treatment and how it is thought to work

 

[Ninan]

Thanks, Hip. Now can you make the disease itself less complicated? Please?

Have you heard of the vaccine making 60-65 % better? Half of them got much better. And the effect seems to be lasting.

"Professor Gottfries is a ME-sufferer himself and takes this vaccine to keep in good shape. The vaccine was originally designed to adress stafylocock-infections. As professor Gottfries realized that the vaccine was helpful for ME he began to treat his patients with it. Unforunantely and despite protest from Gottfries and colleagues the vaccinemanufacturer decided not to manufacture this particular vaccine in 2005. Gottfries bought a box full of vaccine for himself and this source keeps him healthy but unfortunantely he has nothing to offer his patients. Professor Gottfries has now decided to, if possible, start the manufacturing again. Research on the vaccine has been done in "Fibromyalgia/Chronic Fatigue Syndrome - Aspects on biology, treatment and symptom evaluation" in Gothenburg university."

They need 900 000 USD. That's nothing.

 

[Hip]

@Ninan
Yes, I have heard of this.

Staphylococcus toxoid vaccine contains 80% alpha toxin (also called alpha hemolysin), which is the active ingredient.

I tried to find a manufacture of injectable Staphylococcus vaccine, but could not find one.

I am not sure why this vaccine was discontinued. If it was working well for ME/CFS, then you expect large sales (since 0.2% of the population has ME/CFS), and thus good profits. I can only assume that the benefits of this Staphylococcus vaccine were not that great, or the cost was very high, and that's why ME/CFS patients did not buy it when it was available in the past.

If enough of us ME/CFS patients could get together and find a company that is capable of manufacturing this Staphylococcus vaccine, and we made it known to that company that we would all buy the vaccine (guaranteed sales), then perhaps this might convince such a company to make it again.

 

[Ninan]

I know these people. The reasons for discontinuating was 1) that since the coming of penicillin this vaccine was used less and less for other stuff and 2) that the Swedish FDA forbade the use on PWME:s because one of the ingredients was mercury. The authoroties were concerned that repeated use would cause poisoning. So the Gottfries clinic need 900 000 USD to manufactor a vaccine just like it but without mercury.

The third reason was probably the usual: ME/CFS is not known and not considered a disease on which you can make money.

There was nothing wrong with the trials or the result.

 

[Ninan]

I'm still trying to figure out how this vaccine thing started?.............I mean what was the reasoning behind whoever started this thing. What gave someone the idea that the staph vaccine might help with other conditions? I am just curious as to the line of reasoning............the physiology behind it. I mean if this is truly helping some with me/cfs.......wouldn't knowing the theory behind it......be helpful perhaps for research? Is this favorable response to the vaccine.....along the same lines as what happens to some of us when we get an infection? Our immune systems are responding true a trigger.......whether it be a vaccine, infection, etc..........and as a result of whatever happens in that response process........our me/cfs symptoms are better. (only speaking for some of us)......I know this isn't the case for everyone with CFS. I remain interested in why this is happening.

It all started when prof Gottfries himself got ME/CFS. He guessed it had something to do with immunity and tried various treatments on himself. This vaccine worked. He still uses it. And they still need 900 000 USD. I'm pretty sure it has nothing to do with having an infection or not. The vaccine modulates the immune system -- they have found changes in serum -- and that's why we get better.

 

[Hip]

Well, if ME/CFS patients in the past have taken this Staphylococcus vaccines for many years, and generally felt better not worse, then the mercury could not have been causing much harm.

And if Professor Gottfries is still using his old stock of Staphylococcus vaccines to treat his own ME/CFS, these will contain mercury.

I would be happy to try out a Staphylococcus vaccine with a mercury preservative, but I cannot find any manufacturers.

 

[mellster]

I wonder if phage therapy might also be a good solution for treating a chronic staphylococcus infection instead? Bacteriophages (phages) are viruses that attack bacteria, but have no effect on human cells.

I think this could be the preferential treatment, avoiding ABx resistance if they are right. I also think there is a big possibility that they are onto something here, at least from what I know a big group of CFS patients are borderline anemic and this could be explained with staphylococcus destroying red blood cells.

 

[Ninan]

Some reacted to the mercury, some didn't. The clinic have been searching "the whole western world", as they say, but haven't found any replacer. Sadly.

It's crazy though. People buy houses for much more and it would even be a good investment and still...

The Meyou-foundation has raised half that amount in a short time. It should be possible.

 

[Helen]

It all started when prof Gottfries himself got ME/CFS. He guessed it had something to do with immunity and tried various treatments on himself. This vaccine worked. He still uses it. And they still need 900 000 USD. I'm pretty sure it has nothing to do with having an infection or not. The vaccine modulates the immune system -- they have found changes in serum -- and that's why we get better.

@Tammy , @mellster and Ninan
No Ninan, as you say, it has nothing to do with any ongoing infection or staph´s . Its effect is on the immune system as you say. You wrote "that´s why we get better". Do you use the vaccine yourself? Good to see another Swede here .

 

[mellster]

@Tammy , @mellster and Ninan
No Ninan, as you say, it has nothing to do with any ongoing infection or staph´s . Its effect is on the immune system as you say. You wrote "that´s why we get better". Do you use the vaccine yourself? Good to see another Swede here .

Sure it has immunemodulatory effects,but a staph vaccine is designed to trigger staph antibody production and therefore cut down on infections, possibly incl. chronic subacute ones. Here is a recent article about a vaccine against s. aureus:
http://abcnews.go.com/Health/story?id=117950
Of course raging acute/progressed infections would likely need to be additionally treated either via ABx and/or phage therapy.