UK PEOPLE ....can YOU help me re testing ?

[Emmarose47]

Hi
I'm wanting to explore more what goes on in my body ...viruses and contributing factors to m.e CFS .
Who do I go to without breaking the bank ?

I've had the usual gp bloods I show neg for limes , pos for EB in the past and all.other blood work fine .

In the past when younger lot of cold sores ( herpes ) ... In 20s bad tonsillitis ..
Now in 40s ongoing sinusitis but I don't get the infected mucus anymore but all other symptoms .
I also have ongoing neck lymph node swelling left side , ear ache on the left and sore throats

All help gratefully received I'm.new at all this ...
I've seen the mini road map and it's great but I'm still confused and also.have no clue where to go to get tests ?

 

[splusholia]

Sorry I can’t help but I’m following this with interest because I have exactly the same symptoms as you and I am also in the UK, and confused about where to go.

 

[Emmarose47]

Sorry I can’t help but I’m following this with interest because I have exactly the same symptoms as you and I am also in the UK, and confused about where to go.

Hi splusholia
Good to hear u

 

[BrightCandle]

I haven't found a way to make the NHS investigate in 7 years. I have seen over 20 different GPs and the reality is the NHS just doesn't do this type of testing at all, they aren't interested in researching it. ME patients are too complex and its easier to just give us the diagnosis and tell us to fuck off. The NHS has a way, its CBT/GET and that is basically all that is on offer anywhere you go and both will make you worse. They will refuse to treat the ongoing symptoms as well so its unlikely you will get anywhere that way too, I haven't found a doctor or specialist willing to help in any way beyond the migraines.

I did try the private route, I got an MRI of my brain and spine done and those ruled out some possibilities, I also had some private blood tests done to rule out things the NHS can't be bothered to look for. I also tried to see Dr William Wier who specialises in ME/CFS from a virology background, but he and his team just never got back to me after saying they say they would many times. I got fed up of chasing him after 10 attempts spanning from March to October last year. Waste of time and effort.

The reality is there is no cure, no treatments even passing a medical level of confidence and the basis of the condition is not understood. So the NHS has nothing it will do, its official position is still that you are ill with deconditioning as you have the mistaken mental belief you can't exercise, in that environment not surprisingly they are not going to be treating you with anything but psychosomatic approaches and exercise.

All you can do is accept where you are and what you can do, adopt pacing to avoid crashing. Apply for PIP based on your disabilities and use it to improve mobility a bit and then all you can do is wait. Hopefully this year the OMF completes a double blind trial of Amplify and that shows it works, then at least it may become available to us legally and via healthcare. They might also find a root cause for the disease. All we can do in the UK is wait for the countries that care about understanding this to do so and publish and hope by that point the NHS has realised it tortures its patients and is then ready to adopt treatment options and has expelled the doctors who hurt people. It is by no means certain that will happen unfortunately.

 

[splusholia]

I haven't found a way to make the NHS investigate in 7 years. I have seen over 20 different GPs and the reality is the NHS just doesn't do this type of testing at all, they aren't interested in researching it. ME patients are too complex and its easier to just give us the diagnosis and tell us to fuck off. The NHS has a way, its CBT/GET and that is basically all that is on offer anywhere you go and both will make you worse. They will refuse to treat the ongoing symptoms as well so its unlikely you will get anywhere that way too, I haven't found a doctor or specialist willing to help in any way beyond the migraines.

I did try the private route, I got an MRI of my brain and spine done and those ruled out some possibilities, I also had some private blood tests done to rule out things the NHS can't be bothered to look for. I also tried to see Dr William Wier who specialises in ME/CFS from a virology background, but he and his team just never got back to me after saying they say they would many times. I got fed up of chasing him after 10 attempts spanning from March to October last year. Waste of time and effort.

The reality is there is no cure, no treatments even passing a medical level of confidence and the basis of the condition is not understood. So the NHS has nothing it will do, its official position is still that you are ill with deconditioning as you have the mistaken mental belief you can't exercise, in that environment not surprisingly they are not going to be treating you with anything but psychosomatic approaches and exercise.

All you can do is accept where you are and what you can do, adopt pacing to avoid crashing. Apply for PIP based on your disabilities and use it to improve mobility a bit and then all you can do is wait. Hopefully this year the OMF completes a double blind trial of Amplify and that shows it works, then at least it may become available to us legally and via healthcare. They might also find a root cause for the disease. All we can do in the UK is wait for the countries that care about understanding this to do so and publish and hope by that point the NHS has realised it tortures its patients and is then ready to adopt treatment options and has expelled the doctors who hurt people. It is by no means certain that will happen unfortunately.

The NICE guidelines are changing on this.

 

[Treeman]

I'm wanting to explore more what goes on in my body ...viruses and contributing factors to m.e CFS .
Who do I go to without breaking the bank ?

Write down all your symptoms then go to your GP and ask them to send you to the specialist who deals with them. I did this and found problems with my immune system, however some of the issues like mitochondria working, there are no specialist in the NHS that will look in to it as they're a small team and mainly deal with children who have shortened life spans due to the diseases. Good luck.

 

[Emmarose47]

I haven't found a way to make the NHS investigate in 7 years. I have seen over 20 different GPs and the reality is the NHS just doesn't do this type of testing at all, they aren't interested in researching it. ME patients are too complex and its easier to just give us the diagnosis and tell us to fuck off. The NHS has a way, its CBT/GET and that is basically all that is on offer anywhere you go and both will make you worse. They will refuse to treat the ongoing symptoms as well so its unlikely you will get anywhere that way too, I haven't found a doctor or specialist willing to help in any way beyond the migraines.

I did try the private route, I got an MRI of my brain and spine done and those ruled out some possibilities, I also had some private blood tests done to rule out things the NHS can't be bothered to look for. I also tried to see Dr William Wier who specialises in ME/CFS from a virology background, but he and his team just never got back to me after saying they say they would many times. I got fed up of chasing him after 10 attempts spanning from March to October last year. Waste of time and effort.

The reality is there is no cure, no treatments even passing a medical level of confidence and the basis of the condition is not understood. So the NHS has nothing it will do, its official position is still that you are ill with deconditioning as you have the mistaken mental belief you can't exercise, in that environment not surprisingly they are not going to be treating you with anything but psychosomatic approaches and exercise.

All you can do is accept where you are and what you can do, adopt pacing to avoid crashing. Apply for PIP based on your disabilities and use it to improve mobility a bit and then all you can do is wait. Hopefully this year the OMF completes a double blind trial of Amplify and that shows it works, then at least it may become available to us legally and via healthcare. They might also find a root cause for the disease. All we can do in the UK is wait for the countries that care about understanding this to do so and publish and hope by that point the NHS has realised it tortures its patients and is then ready to adopt treatment options and has expelled the doctors who hurt people. It is by no means certain that will happen unfortunately.

Hi thanks

I haven't found a way to make the NHS investigate in 7 years. I have seen over 20 different GPs and the reality is the NHS just doesn't do this type of testing at all, they aren't interested in researching it. ME patients are too complex and its easier to just give us the diagnosis and tell us to fuck off. The NHS has a way, its CBT/GET and that is basically all that is on offer anywhere you go and both will make you worse. They will refuse to treat the ongoing symptoms as well so its unlikely you will get anywhere that way too, I haven't found a doctor or specialist willing to help in any way beyond the migraines.

I did try the private route, I got an MRI of my brain and spine done and those ruled out some possibilities, I also had some private blood tests done to rule out things the NHS can't be bothered to look for. I also tried to see Dr William Wier who specialises in ME/CFS from a virology background, but he and his team just never got back to me after saying they say they would many times. I got fed up of chasing him after 10 attempts spanning from March to October last year. Waste of time and effort.

The reality is there is no cure, no treatments even passing a medical level of confidence and the basis of the condition is not understood. So the NHS has nothing it will do, its official position is still that you are ill with deconditioning as you have the mistaken mental belief you can't exercise, in that environment not surprisingly they are not going to be treating you with anything but psychosomatic approaches and exercise.

All you can do is accept where you are and what you can do, adopt pacing to avoid crashing. Apply for PIP based on your disabilities and use it to improve mobility a bit and then all you can do is wait. Hopefully this year the OMF completes a double blind trial of Amplify and that shows it works, then at least it may become available to us legally and via healthcare. They might also find a root cause for the disease. All we can do in the UK is wait for the countries that care about understanding this to do so and publish and hope by that point the NHS has realised it tortures its patients and is then ready to adopt treatment options and has expelled the doctors who hurt people. It is by no means certain that will happen unfortunately.

Hi thanks bright candle ...
May I ask where u got extra bloods done and what they tested for ? Did anything show up ?

 

[Emmarose47]

Write down all your symptoms then go to your GP and ask them to send you to the specialist who deals with them. I did this and found problems with my immune system, however some of the issues like mitochondria working, there are no specialist in the NHS that will look in to it as they're a small team and mainly deal with children who have shortened life spans due to the diseases. Good luck.

Hi treeman thanks
May I ask what symptoms your took and who you were sent .. has anything helped your immune system ?

 

[YippeeKi YOW !!]

All you can do is accept where you are and what you can do, adopt pacing to avoid crashing.

I'd add: Research, research, research. There are goldmines in these threads, and you can ask questions which most members, if not most likely all, are happy to answer. Don't feel that your questions are dumb. They're not. They're essential to your ability to understand things that might help.

Start googling your symptoms and read as much as you can. It's hard slogging til you get into the rhythm of it, and when I was at my worst it could take as much as several weeks to read ONE research study due to serious brain complications and fatigue as bad as any I've experienced except for cancer, but with the added disadvatage of lasting longer and having no treatment to combat it.

Don't let yourself get discouraged because others seem to know so much and you feel you know so little. Every one of the savants in these threads started out, at some point, where you are, and just stuck with it.

Onward and upward !!!

 

[Emmarose47]

I'd add: Research, research, research. There are goldmines in these threads, and you can ask questions which most members, if not most likely all, are happy to answer. Don't feel that your questions are dumb. They're not. They're essential to your ability to understand things that might help.

Start googling your symptoms and read as much as you can. It's hard slogging til you get into the rhythm of it, and when I was at my worst it could take as much as several weeks to read ONE research study due to serious brain complications and fatigue as bad as any I've experienced except for cancer, but with the added disadvatage of lasting longer and having no treatment to combat it.

Don't let yourself get discouraged because others seem to know so much and you feel you know so little. Every one of the savants in these threads started out, at some point, where you are, and just stuck with it.

Onward and upward !!!

Thank u yippeeki
Your replies as re always so helpful and kind ...I really appreciate ..
Yes agree ...I read stuff but I can't retain more than basics ...I'd do well to keep notes but I often don't have the drive to do that ...
Still the forum is so so helpful and I'm learning to ask questions , break it down and ask for simple ...

 

[YippeeKi YOW !!]

Still the forum is so so helpful and I'm learning to ask questions , break it down and ask for simple ...

Atta girl !!! All journeys begin with a single step .

Or in our case, a short slow crawl ....

Keep asking, keep learning, carefully consider and then maybe try out things that seem to apply to you, but follow our written-in-stone rule: Start Low And Go Slow. This gives your body time to react in a moderate way in case it doesn't agree with your choice ....

Thank you for the kind words !!!

 

[BrightCandle]

May I ask where u got extra bloods done and what they tested for ? Did anything show up ?

I got a lyme (I had been in forests with ticks and been bitten at some point prior), ANA and T3 blood tests. You will need to look online/locally but you can get some of it done in the post from a place like medichecks (I don't recommend them but its who I used). All of these tests my GP refused to do, so I did them myself. There are still many known causes I am unable to rule out, beyond my funds to test myself or my current capacity to go get done.

 

[YippeeKi YOW !!]

Yes agree ...I read stuff but I can't retain more than basics ...I'd do well to keep notes but I often don't have the drive to do that ...

Notes are invaluable, and for me the easiest way to keep them was to create a word doc, put the study title at top, then a link to it in case I wanted to access it again long after the first time, and then type in ANYTHING that I thought I'd understood from my feeble, febrile reading that day. It might be totally wrong in the aggregate, but there was almost always a germ, tiny or just sort of small, a germ of some value in there.

To find them relatively easily, I created a sort of hashtag one word heading, like "MCAS - 2013 NIH Research paper", or "MCAS - Article from Science Direct, 2011 " .... that way if I did it right and stuck to it, I'd be able to find every research paper, article, or bit of info on MCAS pretty easily. Of course, I screwed it up over and over, but by and large, it worked pretty well. The problem was that I didnt back it up and lost a huge amounts of stuff in a massive computer crash.

(Note to self: You're and idiot.)

Just keep at it, even when you dont believe that it's going to yield anything except frustration and mistakes. Because while you're doing it, you're building some real skills as well as more information than you realize at the time.

 

[Emmarose47]

Thank u yippee your very yipppeee for me today ! That's a great idea and one I hadn't thought of ..I could then cut a paste ..
When u say create a link to it what do u mean ?

 

[YippeeKi YOW !!]

There are still many known causes I am unable to rule out, beyond my funds to test myself or my current capacity to go get done.

Frustrating and unfair and a total rip-off in a one-payer medical system.

Just build on what you've learned, do the best you can with whatever you've learned.

Life sometimes sucks., and is rarely fair or honest.

 

[YippeeKi YOW !!]

When u say create a link to it what do u mean ?

Copy the URL, that jumble of words and letters and numbers that starts with http/ or https/ in the window at the top of each page on the internet. It's the internet address of the article you want to be able to access later, or at least not lose entirely.

Like this one, copied at the tippy top of this page, and the address for this specific page of this thread in this site ....

https://forums.phoenixrising.me/threads/uk-people-can-you-help-me-re-testing.83349/#post-2330115

 

[YippeeKi YOW !!]

I could then cut a paste ..

That's one of the many reasons it works so well. You can eventually put together a 360 degree view of whatever you're investigating, much of it in your own words, all of it with addresses and links for additional review ....

You go !!! It doesnt matter how long it takes or how little you think you're accomplishing .... you'll be getting more out of it than you know .... .....

 

[Treeman]

May I ask what symptoms your took and who you were sent .. has anything helped your immune system ?

I had 27 symptoms. I was diagnosed with hypogammaglobulinemia, high TPO anti bodies and ANA anti bodies. I've been moderate for 3.5 years and unable to work and mainly house bound, but ill for about 32, this bout. With rest the ANA and TPO antibodies have gone away and I'm awaiting updated testing for hypogammaglobulinemia. They gave me hydroxychloroquine but this did nothing. I have self medicated with supplements and medications for some of the symptoms which has helped. All discovered after reading this forum.

I wanted the NHS to look at my mitochondria function, but they don't even offer the service, so no luck there. Everything takes so long and they still tell me they can't find anything, which is a familiar story.

I believe my ME/CFS has been with me since I was 7, I'm 55 now. Most of the time it's been mild and I believe it will improve with rest, but may take several years from this point.

I try to stay within my energy levels, this is the best thing I can do.

 

[Emmarose47]

I had 27 symptoms. I was diagnosed with hypogammaglobulinemia, high TPO anti bodies and ANA anti bodies. I've been moderate for 3.5 years and unable to work and mainly house bound, but ill for about 32, this bout. With rest the ANA and TPO antibodies have gone away and I'm awaiting updated testing for hypogammaglobulinemia. They gave me hydroxychloroquine but this did nothing. I have self medicated with supplements and medications for some of the symptoms which has helped. All discovered after reading this forum.

I wanted the NHS to look at my mitochondria function, but they don't even offer the service, so no luck there. Everything takes so long and they still tell me they can't find anything, which is a familiar story.

I believe my ME/CFS has been with me since I was 7, I'm 55 now. Most of the time it's been mild and I believe it will improve with rest, but may take several years from this point.

I try to stay within my energy levels, this is the best thing I can do.

Thanks for sharing .so the things you were diagnosed.with how did that come about ...was it through the NHS ?

 

[Treeman]

.so the things you were diagnosed.with how did that come about ...was it through the NHS ?

Yes, the immunology department