GP agreed to run some new tests.

[snowathlete]

I went to my GP two months ago about herpes infections and getting tested and having antivirals. She consulted an ME doctor, at which point i knew i was doomed.

Anyway, the ME doctor said she didnt think it was worth even trying. But to my doctors credit, she agreed to run a few new tests, for some herpes viruses, and some bacterial stuff, and a lymes disease test - she asked why i wanted it, saying that alot of people seem to what a lymes test nowadays, worried about it, and i explained that i had reason to think it might be important, becuase it is so often misdiagnosed as ME. She didnt seem to know.
Anyway, she said i could have it. so thats good. i expect its the cheaper, less reliable test, but still...

She also will rerun all the tests ive had before as they are easy for her to order. I said, whats the point, ive been tested and dont have them (some like Hep) why not save 1000 on all these tests, and instead run the one or two other tests that i havent had yet. But basically she seemed to be saying that some are easy to order because they are routine, whereas rarer ones are harder to justify because they are less common, even though they may be more valuable. Its illogical.

Anyway, lets hope that the new tests i do get are useful, and if not at least thats more stuff ruled out. I plan to go the breakspear after this and have the rarer test done.

 

[Esther12]

I plan to go the breakspear after this and have the rarer test done.

I few people here have said the breakspear is rather expensive, and doesn't seem to achieve much. At this point, donating to medical research charities might be a better bet than Breakspear, even if you won't be seen personally.

 

[snowathlete]

I few people here have said the breakspear is rather expensive, and doesn't seem to achieve much. At this point, donating to medical research charities might be a better bet than Breakspear, even if you won't be seen personally.

From what i have read there is a wide range of experience, although the majority do seem to say that they have had some benefit, even if they havent been made completely well.
It is expensive though and i think you need to go armed with knowlege to ensure yoru investigations and treatment is directed in the right areas, most likely to benefit you. Thats what I intend to do, and we will have to see if its worth it or not.

Although i think its well worth supporting the ME charities, the reality is that this isnt likely to benefit you directly any time soon. Whereas trying out different treatments does at least have some chance of resulting in some personal benefit in the near future.

I do with there were more options, but in the UK its really the Breakspear or Dr Myhill, as far as i can tell.

 

[Esther12]

I have to admit that my preference has been for 'nothing', and I know that's not very appealing choice (my scepticism is aided by financial limitations!).

Hopefully your test results will find something that can be pursued. I think you're right to say that it's important to go to Breakspear with some independent knowledge, and not just trust their advice. They could find something helpful for you. Good luck with it all.

 

[justy]

Good ;uck with all of this, i know you are well informed and that will help when negotiating with Gps and the Breakspear. For me personally i would love to be able to afford to go to the Breakspear, just for testing (especially for viruses and lyme etc) then i could take those results to a private GP for prescriptions for antivirals etc (or ask Dr Myhill to rpescribe) I am a patient of hers, but she doesnt offer this kind of testing.
Best wishes, and please keep us up to date with your progress.

 

[snowathlete]

Good ;uck with all of this, i know you are well informed and that will help when negotiating with Gps and the Breakspear. For me personally i would love to be able to afford to go to the Breakspear, just for testing (especially for viruses and lyme etc) then i could take those results to a private GP for prescriptions for antivirals etc (or ask Dr Myhill to rpescribe) I am a patient of hers, but she doesnt offer this kind of testing.
Best wishes, and please keep us up to date with your progress.

I checked their costs for the testing against other labs in the UK which take private orders, and they are comparable, which i have to say i was surprised about and pleased about. I still have to limit what i spend, i certainly dont have alot, so it was well worth the effort in convincing my GP to run some of the tests on the NHS first.
The others will probably cost me about a grand, and i obviously have to be selective in terms of what i get tested.

If i need antivirals, i am also going to them go back to the NHS and ask them to prescribe them. If they wont (which might happen if my test results arent conclusive) then i will probably be buying mine online from abroad, because i wont be able to afford them from the breakspear (i am guessing, i havent compared their prices yet) so im breakspearing it on a budget really.

I decided a few months ago that keeping my car but not being well enough to use it, doesnt make sense, and that selling it, and getting an opportunity to get well, is better. Obviously if i get well, i will then we walking everywhere for some time. But i can live with that.

 

[Sallysblooms]

Good luck. Blood tests are a great way to finds answers or eliminate things. I get lots of testing twice a year to guide my suppplement doses.