I've applied for the FM/a blood test. - Fibromyalgia Acti...

Fibromyalgia Action UK

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I've applied for the FM/a blood test.

WorldOHurt profile image
33 Replies

Thanks to another member of this forum who posted information about the BCG tuberculosis vaccine clinical trials coming up I was able to research the FM/a test so I decided to apply for it online. The BCG theory sounds very promising to me. My daughter had sent me an email years ago with her theory that cytokines and chemokines imbalances were responsible for fibro and other autoimmune disorders. I'll keep you all tuned in to what happens next.

Here's a link to information about the BCG vaccine and the FM/a blood test.

Edited by Admin Please pm member for link thank you.

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WorldOHurt profile image
WorldOHurt
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33 Replies
Mdaisy profile image
Mdaisy

Thanks for posting that you've paid for the test and I am interested to read further posts about it and the results. I must say however, that up until now the test has come under scrutiny as to whether the test is a valid way to diagnose Fibro and obviously the accuracy of results were discussed as Cytokine Levels are present in a number of conditions. I don't know what came of this and whether measures were taken to ensure the test reliability was increased.

Could I also add that to date there are no independent peer reviewed research studies in relation to the BCG vaccine and how (if indeed it does) it helps people living with Fibromyalgia. Obviously this company have an interest in this research as they would like to develop upon this to sell to people, usually research that is either independent or replicated over and over it thought to produce reliable results. That being said like everyone I hope this avenue of research does eventually prove to be of benefit as this would be amazing for all those worldwide living with this awful condition.

I look forward to reading your posts

Emma :)

WorldOHurt profile image
WorldOHurt in reply toMdaisy

I haven't paid for the blood test yet...and my primary gov. insurance is supposed to pay for it....I just applied to receive the blood test. I haven't even heard from anyone yet as it is the weekend. xxoo

WorldOHurt profile image
WorldOHurt in reply toMdaisy

Also my understanding is that if the blood test shows that I have cytokine and chemokine increases (imbalances) in my body I will be invited to join the clinical trial for the not yet FDAA approved research. My reasoning is if I can take a harmless vaccine to see if it improved or abolished my fibro symtoms then I am certainly going to get the vaccine. I sure would like to find out sooner than later as I'm not getting any younger (71) and I'm suffering greatly every day! lol I'm sure no expert on the subject but this is just my reasoning. xxoo

WorldOHurt profile image
WorldOHurt in reply toMdaisy

I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

justmai profile image
justmai

I had the vaccine as a child as my grandfather died of tuberculosis, yet I still have autoimmune diseases and I’m diabetic. So I don’t think it does work having read up on it,

WorldOHurt profile image
WorldOHurt in reply tojustmai

I'm still researching the tb vaccine....some people stated in an article I just finished that the tb vaccine has to be renewed every 8-10 years. I'm no expert, that's for sure, so I will continue to look into this.

justmai profile image
justmai in reply toWorldOHurt

You don’t usually get a booster for bcg, you are advised against it if you have already had it as a child, was told that when I started nursing and had to have boosters for other things

WorldOHurt profile image
WorldOHurt in reply tojustmai

Oh, I wasn't aware of that. Like I said, I'll have to look into it more. I'm just beginning this process and intend on researching it a lot more. Thanks.

WorldOHurt profile image
WorldOHurt in reply tojustmai

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

Another thing is if you read Wikipedia about the BCG vaccine online it talks about boosters every 15 yrs. xxoo

WorldOHurt profile image
WorldOHurt in reply tojustmai

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

Never knew there was a test?! 🤔Do you have to pay privately then? 🤔My diagnosis following a Rheumatologist examining me and pushing points all over me and yep, it's Fibro! Pen X💜🤗

WorldOHurt profile image
WorldOHurt in reply to

My health insurance will pay for the blood test. xxoo

in reply toWorldOHurt

Oh right are you in the US? This makes more sense now Pen X💜🤗

WorldOHurt profile image
WorldOHurt in reply to

Yes I am in the state of Nevada. Just moved here 2 yrs ago to be closer to my grandchildren who just live 4 houses away.

WorldOHurt profile image
WorldOHurt in reply to

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

in reply toWorldOHurt

Thanks for the update Pen X💜🤗

Horsesgalore profile image
Horsesgalore

Most people of a certain age will of had the BCG vaccine as a teenager, myself included & clearly it has unfortunately not helped me.

WorldOHurt profile image
WorldOHurt in reply toHorsesgalore

Do you mind if I ask how old you are now? xxoo

Horsesgalore profile image
Horsesgalore in reply toWorldOHurt

I don't mind, I'm 48 & in the UK you got the vaccine the first or second year of senior school.

WorldOHurt profile image
WorldOHurt in reply toHorsesgalore

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

WorldOHurt profile image
WorldOHurt in reply toHorsesgalore

I'm still researching the tb vaccine....some people stated in an article I just finished that the tb vaccine has to be renewed every 8-10 years. I'm no expert, that's for sure, so I will continue to look into this. xxoo

WorldOHurt profile image
WorldOHurt in reply toHorsesgalore

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

Dinkie profile image
Dinkie

I had the vaccine as a child and then, when a social worker I worked with contracted TB I had the BCG vaccine again as did my whole family on recommendation of the local hospital/social services. The first vaccine was before fibro the second vacccine was well after I had fibro symptoms (not diagnosed) for some 12 years. The vaccine didn't make one iota of difference to me but that's not to say it might not work for someone else.

WorldOHurt profile image
WorldOHurt in reply toDinkie

That's interesting....thx for letting me know. I had an aunt that was from the UK and she contracted TB just after the war.

WorldOHurt profile image
WorldOHurt in reply toDinkie

I posted above in reply to another member: I just heard back about my application for the test....they have checked and my medical insurances will pay for the entire test....I asked a question to one lady about the fact that some people in the UK have been vaccinated for the tb vaccine and still have fibro. One lady said that she was vaccinated twice, once after she developed fibro and it didn't help her. The lady who called me said that she thinks the BCG vaccine is modified and not the same one the UK members have received in the past. Another lady is supposed to call me who knows more about the vaccine so will ask her also. Now all I have to do is get authorization from my dr. who I am seeing today, coincidentally. Another thing I am interested in is a genome/dna study that is being held by UCLA and you have to have the FM/a blood test before you will be invited to join in on that study. Here goes....will post more updates!

Dinkie profile image
Dinkie

Good luck - you can but try. Anything that may help is worth investigating.

WorldOHurt profile image
WorldOHurt in reply toDinkie

Pray for me please. xxoo

I live in Brazil and most people here have the BCG jab as a child (at least people of my age, 52, or younger). Fibromyalgia levels are the same as in other countries, so there’s probably no correlation. Are there any big studies on the matter that justifies this trial? All I have read so far is that immunity and protection vary widely depending on genetics (people and bacteria) and previous exposure to related mycobacteria. Very complicated issue.

WorldOHurt profile image
WorldOHurt in reply to

This 477 person study was published and was the precursor to this study.

link.springer.com/article/1...

in reply toWorldOHurt

Thanks! Will have a look.

in reply toWorldOHurt

Nothing on BCG in this study...

WorldOHurt profile image
WorldOHurt in reply to

Hi....this is the one study done to fine out cytokines and chemokines were much lower in FM patients. This is why the FM/a test is being done.....those who test positive in the study will be invited to take the BCG vaccine. They will also be asked to participate in the UCLA DNA/Genome study.

WorldOHurt profile image
WorldOHurt in reply to

I originally posted links on here to the information but the moderator had to take them off....so I can PM you some links if you like.....this info came from an article I just finished reading: "The vaccine that EpicGenetics is looking at already exists. It’s the BCG vaccine that is used for Tuburculosis, but it is not given at the same rate. This answers the question of why someone who has had that vaccine could later still get Fibromyalgia. Also, it’s less of a vaccine to prevent Fibromyalgia than it is using an existing vaccine to treat Fibromyalgia.

Dr. Gillis also pointed out that the species of BCG that they are studying is not the same species that is currently being used and it hasn’t been used in decades. BCG has been used to raise these same proteins in cancer patients (for whom the proteins are often destroyed during chemo). Because BCG has been found in those situations to raise the levels of these specific proteins Dr. Gillis and his team believe it will also work to raise the levels in Fibromyalgia patients and in doing so reverse their symptoms."

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