Any European/UK lab that tests for all the relevant viruses?

[Tella]

Does anyone know of one (ideally UK) as I’m looking to do the whole panel before starting antivirals. Has anyone taken antivirals without prescription too? Is it dangerous to do that? Thanks

 

[Carl]

Your wasting your time and money because it will not solve it. The cause is not viral, it is a bacterial, yeast or fungal infection which causes Increased Digestive Permeability which is what causes all the problems apart from a few additional things that I will not go into because everyone has missed it.

 

[Tella]

Your wasting your time and money because it will not solve it. The cause is not viral, it is a bacterial, yeast or fungal infection which causes Increased Digestive Permeability which is what causes all the problems apart from a few additional things that I will not go into because everyone has missed it.

That’s not true as some have been pretty much cured by antivirals. Plus if u are so sure, then why isn’t everyone already cured if it’s so easy to diagnose? Lol... are u cured?

 

[Carl]

They have not! The so called cure was only temporary. I suggest that you read more and see what actually happened. Viruses only become a problem due to the immune dysfunction which allows them to reproduce. The immune dysfunction is a result of the Increased Digestive Permeability which creates antibodies to foods, cytokine release, histamine release which promotes inflammation which alters the immune response and also affects mitochondrial function.

I was well on my way to formulating a cure and had made progress but 2.5 years ago I was bitten by a bug likely to be Lyme or some other nasty bacteria which changed my fatigue/exhaustion to extreme even with the methods that I had been using successfully for 25 years which changed everything from only minor symptoms to extreme. Other things have also made life even more difficult such as a failed washing machine which means I have to hand wash clothes which takes time and energy that I do not have. A shower that failed meaning that washing takes hours, more energy that I do not have.

I am very sure. It will eventually be proven but researchers are doing short cuts which means they are unable to pinpoint the location. Research in the UK has been investigating the digestive permeability in CFS and they have withheld publishing so that they can find the cause, which I doubt that they will do. I worked it all out just as their research began in late 2013. It is not easy to diagnose, that is the problem and it never will be because it is not just one bacteria/yeast or fungi which can be responsible. There is a thread on this forum where someone was cured by taking antibiotics and he believed that it was a staph infection which was destroyed. Mine is not a staph but I do have what I believe is a staph infection which increases my digestive permeability in a different location to the one which causes CFS. That partly fell to silver but all 5 infections are now resistant to silver. They just get stronger and more resistant the more that is thrown at them. Eliminating their biofilm removes their protection and significantly reduces their ability to adapt. I can do that successfully. It's identifying all the necessary Efflux Pump Inhibitors necessary to address all 8 Efflux Pump super family possibilities that is the hard part.

BTW MRSA is nothing by comparison. A biofilm and multiple layers promotes adaption by retaining failed DNA which is then used to alter their DNA so they become immune to anything toxic or damaging to them.

By all means go ahead and waste your money but I will bet that it fails and you end up where you started.

 

[Tella]

They have not! The so called cure was only temporary. I suggest that you read more and see what actually happened. Viruses only become a problem due to the immune dysfunction which allows them to reproduce. The immune dysfunction is a result of the Increased Digestive Permeability which creates antibodies to foods, cytokine release, histamine release which promotes inflammation which alters the immune response and also affects mitochondrial function.

I was well on my way to formulating a cure and had made progress but 2.5 years ago I was bitten by a bug likely to be Lyme or some other nasty bacteria which changed my fatigue/exhaustion to extreme even with the methods that I had been using successfully for 25 years which changed everything from only minor symptoms to extreme. Other things have also made life even more difficult such as a failed washing machine which means I have to hand wash clothes which takes time and energy that I do not have. A shower that failed meaning that washing takes hours, more energy that I do not have.

I am very sure. It will eventually be proven but researchers are doing short cuts which means they are unable to pinpoint the location. Research in the UK has been investigating the digestive permeability in CFS and they have withheld publishing so that they can find the cause, which I doubt that they will do. I worked it all out just as their research began in late 2013. It is not easy to diagnose, that is the problem and it never will be because it is not just one bacteria/yeast or fungi which can be responsible. There is a thread on this forum where someone was cured by taking antibiotics and he believed that it was a staph infection which was destroyed. Mine is not a staph but I do have what I believe is a staph infection which increases my digestive permeability in a different location to the one which causes CFS. That partly fell to silver but all 5 infections are now resistant to silver. They just get stronger and more resistant the more that is thrown at them. Eliminating their biofilm removes their protection and significantly reduces their ability to adapt. I can do that successfully. It's identifying all the necessary Efflux Pump Inhibitors necessary to address all 8 Efflux Pump super family possibilities that is the hard part.

BTW MRSA is nothing by comparison. A biofilm and multiple layers promotes adaption by retaining failed DNA which is then used to alter their DNA so they become immune to anything toxic or damaging to them.

By all means go ahead and waste your money but I will bet that it fails and you end up where you started.

I did reading stories where the antivirals worked. If not cured but totally improved the quality of life. The truth is, nobody is sure what exactly causes ME and I suspect the triggers etc are different for each person. There are only a handful of researchers who are actually trying to do their best to find the cure...hope they will one day. Until then, if I get a shot at trying to cure myself, why wouldn’t I take it...

 

[Hip]

The smartest medical scientists do not know the cause of ME/CFS, although there are theories. So any patient on this forum who tells you they have figured out cause you might want to take with a pinch of salt.


Antivirals have helped some patients, and you can see some success stories here. Though it's hit and miss, and others have not benefited. You will not get them prescribed on the NHS, unfortunately.

Here in the UK it's not possible to test for all the viruses linked to ME/CFS, though you can test for some of them. But you can send off your blood samples to labs abroad to be tested. See this roadmap document for info on these labs.

 

[Tella]

The smartest medical scientists do not know the cause of ME/CFS, although there are theories. So any patient on this forum who tells you they have figured out cause you might want to take with a pinch of salt.


Antivirals have helped some patients, and you can see some success stories here. Though it's hit and miss, and others have not benefited. You will not get them prescribed on the NHS, unfortunately.

Here in the UK it's not possible to test for all the viruses linked to ME/CFS, though you can test for some of them. But you can send off your blood samples to labs abroad to be tested. See this roadmap document for info on these labs.

Thanks so much! That’s very helpful.
That’s why I was wondering if someone from the UK or somewhere where they don’t prescribe them used a no-prescription pharmacy for that...
I’m hoping to see a private doc who can prescribe it.

 

[Tella]

The smartest medical scientists do not know the cause of ME/CFS, although there are theories. So any patient on this forum who tells you they have figured out cause you might want to take with a pinch of salt.


Antivirals have helped some patients, and you can see some success stories here. Though it's hit and miss, and others have not benefited. You will not get them prescribed on the NHS, unfortunately.

Here in the UK it's not possible to test for all the viruses linked to ME/CFS, though you can test for some of them. But you can send off your blood samples to labs abroad to be tested. See this roadmap document for info on these labs.

There are so many viruses one can test for. Would you recommend some particular ones so that I can try to take antivirals that work for them (and possibly others that I don’t get tested for but that will respond to the same treatment)? So that I don’t have to test for them all. Even the ‘specialists’ have no idea as you may know.

 

[Hip]

That’s why I was wondering if someone from the UK or somewhere where they don’t prescribe them used a no-prescription pharmacy for that...

I use the prescription-free pharmacies listed in this post to by my meds. But if you go down that route, the onus is then on you to make sure you know what you are doing (eg, checking for drug interactions, side effects, etc). Some of the antivirals require regular kidney or liver checks, so you need to bring your GP on-board anyway.

Other meds like oxymatrine (for coxsackievirus B or echovirus) are supplements that you can buy online.

The main viruses in ME/CFS are 3 herpesviruses (EBV, cytomegalovirus and HHV-6), which can be tested for in the UK, at places like The Doctor's Laboratory in London and Manchester; and enteroviruses (coxsackievirus B and echovirus) which can be tested for in IMD lab in Germany.

 

[Tella]

I use the prescription-free pharmacies listed in this post to by my meds. But if you go down that route, the onus is then on you to make sure you know what you are doing (eg, checking for drug interactions, side effects, etc). Some of the antivirals require regular kidney or liver checks, so you need to bring your GP on-board anyway.

Other meds like oxymatrine (for coxsackievirus B or echovirus) are supplements that you can buy online.

The main viruses in ME/CFS are 3 herpesviruses (EBV, cytomegalovirus and HHV-6), which can be tested for in the UK, at places like The Doctor's Laboratory in London and Manchester; and enteroviruses (coxsackievirus B and echovirus) which can be tested for in IMD lab in Germany.

Great, thank you! Is there actually a thread/sub-thread (don’t know what’s the difference between the two) with all the recovery stories or is it still in the making?

Could u please point me to any threads that talk about help with reacting to stress/big emotions and also help with high skin sensitivity (really PAIN if someone just brushes your hand)?

Finally, have any no-prescription drugs helped u personally? Many thanks

 

[Tella]

I use the prescription-free pharmacies listed in this post to by my meds. But if you go down that route, the onus is then on you to make sure you know what you are doing (eg, checking for drug interactions, side effects, etc). Some of the antivirals require regular kidney or liver checks, so you need to bring your GP on-board anyway.

Other meds like oxymatrine (for coxsackievirus B or echovirus) are supplements that you can buy online.

The main viruses in ME/CFS are 3 herpesviruses (EBV, cytomegalovirus and HHV-6), which can be tested for in the UK, at places like The Doctor's Laboratory in London and Manchester; and enteroviruses (coxsackievirus B and echovirus) which can be tested for in IMD lab in Germany.

Also how did u manage (if u did) to bring the GP on board? As the guidelines are of course dire when it comes to ME.

 

[Hip]

Great, thank you! Is there actually a thread/sub-thread (don’t know what’s the difference between the two) with all the recovery stories or is it still in the making?

That post is the only recovery stories post I know of. On Health Rising there is a recovery stories resource.

Could u please point me to any threads that talk about help with reacting to stress/big emotions and also help with high skin sensitivity (really PAIN if someone just brushes your hand)?

I don't know any, but if you search the forum you might find some info.

Finally, have any no-prescription drugs helped u personally?

Yes, high dose selenium worked for me, but does not seem to work for many others.

Also how did u manage (if u did) to bring the GP on board? As the guidelines are of course dire when it comes to ME.

I explained to my GP that I bough an antiviral drug that I wanted to try, and asked if it would be possible to arrange some kidney tests on the NHS. He was kind enough to oblige me.

 

[Tella]

That post is the only recovery stories post I know of. On Health Rising there is a recovery stories resource.




I don't know any, but if you search the forum you might find some info.




Yes, high dose selenium worked for me, but does not seem to work for many others.




I explained to my GP that I bough an antiviral drug that I wanted to try, and asked if it would be possible to arrange some kidney tests on the NHS. He was kind enough to oblige me.

Thanks. That’s one kind GP! Generally none of them would like u to get anything without a prescription. Did the antivirals work for u?

 

[Hip]

Did the antivirals work for u?

I rapidly got worsened mental health after starting both tenofovir and Valcyte, so unfortunately had to discontinue. My ME/CFS started after a viral brain infection which caused some brain damage, and ever since then my mental health has been a little fragile.

 

[Tella]

I rapidly got worsened mental health after starting both tenofovir and Valcyte, so unfortunately had to discontinue. My ME/CFS started after a viral brain infection which caused some brain damage, and ever since then my mental health has been a little fragile.

How did u diagnose the infection and the brain damage if u don’t mind me asking?

 

[Hip]

How did u diagnose the infection and the brain damage if u don’t mind me asking?

I'd already caught a viral infection around 20 months earlier, and I noticed how this infection slowly spread from one organ to the next (it started with my throat, then spread to my stomach a few months later). I did not know what it was at that stage, but I knew it was most likely viral, as bacterial throat swab tests were all negative.

Then once when I went out running, I felt something happen in my head, which instantly caused me to lose some mental faculties, for example, I suddenly found it hard to recognize people, I lost all my sense of smell, it felt like the emotional part of my brain had been lobotomized, I lost most of my faculty of empathy, I developed severe ADHD so that reading even a 3 sentence email became a huge challenge, and I developed extreme anxiety so bad that I was not even able to visit a doctor in spite of the terrible state I was in.

I knew I had this viral infection which was jumping from one organ to the next, so I surmised that this "hit" on my brain was very likely due to the virus. Soon after I developed ME/CFS as well.

 

[Hd-x]

You will find on ebay sellers for Immunovir.
https://link.springer.com/article/10.1007/s12325-019-00995-6
I got some benefits from Valtrex, unfortunatly got it no longer prescribed.
Currently I am using also Selenium together with Copper, Zinc, Vitamin C and sometimes L-Lysin.

 

[Tella]

I'd already caught a viral infection around 20 months earlier, and I noticed how this infection slowly spread from one organ to the next (it started with my throat, then spread to my stomach a few months later). I did not know what it was at that stage, but I knew it was most likely viral, as bacterial throat swab tests were all negative.

Then once when I went out running, I felt something happen in my head, which instantly caused me to lose some mental faculties, for example, I suddenly found it hard to recognize people, I lost all my sense of smell, it felt like the emotional part of my brain had been lobotomized, I lost most of my faculty of empathy, I developed severe ADHD so that reading even a 3 sentence email became a huge challenge, and I developed extreme anxiety so bad that I was not even able to visit a doctor in spite of the terrible state I was in.

I knew I had this viral infection which was jumping from one organ to the next, so I surmised that this "hit" on my brain was very likely due to the virus. Soon after I developed ME/CFS as well.

Oh wow, sorry to hear that! I didn’t know myself viruses can literally kill u before I got my M.E. I’m glad to see (I’m assuming) u doing better than before.

In any case, it seems long-term antivirals can wreck u too, so u heal one part but wreck another one...:/