This disappeared when I tried to edit
Original posted above. @Erica@2DB thanks for original likes.
I am writing these words in the hope that someone, can relate to this or it may prepare them if faced with a similar scenario.
My saga continues…
Since my last contact I have filled in a form which (when sanctioned) will allow extra details of the results eg numbers to be sent to me via post.
My istincs tell me that what I receive back is the information I have already.
In other words my Dr asked for the wrong test, when I told her specifically what I wanted in the first place.
Originally she said she could not access one blaming the system, I write letter to her (pay for taxi to deliver it), explaining exactly what I want and Instead of telling me the information I require is not possible (before a test was accessed) she access me one that obviously was never going to give me sufficient result?! Drs latest words to me is that they feel they have done their best and will write to Microbiology, please forgive me for not holding my breath for a positive outcome.
I will wait for this reply from the form I filled in for medical records, but I suspect Ill be taking the private route soon.
Perhaps sending my Dr the invoice!
I can hear your frustration, but it might be worth remembering that our GPs have limitations on what they are allowed to spend their budget on, and which tests they’re allowed to order on our behalf, and they also have to make a clinical judgement about whether it is necessary and helpful. We can’t actually put in an order for a test - it doesn’t really work like that.
Perhaps your GP is not allowed to order a more in depth covid antibody test for anybody, because it can be argued that they are expensive, and even if you learn this detail, it doesn’t necessarily predict how you will respond to covid, because that depends on so many factors, like the quality of the antibodies (which the test can’t assess); your t-cell response to the infection; the viral load you receive on infection, and the strain of covid you were infected by. Plus your immune system on the day - which can wax and wain in strength.
Personally, I have not bothered to get such a test privately, because I’m not convinced it would have helped me to assess the risk at all. Instead, I spoke to my consultants about the risk to me from covid, and planned my activities and behaviour on their professional advice, and my own personal point of view - because everybody’s attitude to risk is different. For example, I was willing to risk aeroplane air (with my mask on) in order to have a holiday, because a holiday would do me so much good. I did so; I didn’t get covid, and the holiday was just what I needed.
I hope that helps you to understand why what you want might possibly not be forthcoming, and why; and how to get help on understanding risk.
I really hope you manage a chat with your consultant soon, and that you get a clearer picture of how you can live without worrying about covid in every situation.
Yea thanks but in short I wrote her a letter asking what I wanted, she had the chance to say sorry I can’t do that or at least tell me the potential scenario. Instead she accessed me "a test "? I get test and as a result time and money has been wasted. Also what about the time wasted by nhs arranging a home visit test for someone which was not what they asked for? All of which could have been avoided if I had contact from GP replying to my original letter
Let’s take the issue of time involved in two examples.
Eg a Dr calls patient to say this is or may not be possible to getexactly what you want. I reply thank you, Ill persue other avenues
Eg b Dr receives request, in reading this says to herself its unlikely but I’ll do my best. Dr decides not to inform patient her decision, thinking she has better things to do, perhaps so. Result patient has wasted time and money, so has NHS!
When you weigh everything up it’s pure amateur
Once again thank you for your reply look after yourself
@anon06
I think you’re looking at the wrong solution to your problem. It’s strikes me that you would benefit from devising a personal risk assessment plan much like my own where I highlight the areas of risk and what can I do to avoid or where possible negate the risk.
I can help you to do it for free or you can do it for free this way you are in control of your own destiny and I think this will make you feel a lot more safe comfortable and happy
Thanks, but Im not going about it the wrong way though I told her straight what I wanted and she had the chance to reply (refer to A & b in earlier messagr), thanks for advice.
Like a lot of people @2DB Im a victim of the system
As said so many times by so many on the Forum we are all different of both body and mind.
As a retired Health & Safety regulator and Advisor I’m well versed in the extremes of the ‘Zealots’ and the ‘Libertarians’ and their subjective views on risk. Get out of bed and get knocked down by a bus or stay in bed and get infected bed-sores. A topical and unfortunate example is spending £200k to dive in an unregulated plastic shell to the deepest ocean and for what?
I mentally risk assess as many do. I shop in the evening, fewer around, mask as needed, sterile rub on hands and maybe a bonus of ‘deals’. I have a ‘treat’ down the local occasionally in the quiet of the day, and yes alcohol!
My WM IgM paraprotein under treatment is currently 5 and when I asked about extending my socialising my Consultant and the CSN’s said “you’ve not gone through all this to become a troglodyte”.
Doctors are also humans with those same traits to risk within the bounds of the Oath and the Budget. Quality of Life and Patients capacity are all factors.
Be assured I’m not antivax and I fully respect the concerns of all on this Forum. Assess and mitigate those life hazards becoming a relevant risk. If not sure seek advice but 'elf an safety doesnt mean no.
To all keep safe and strong of mind. And remember the Doctor says “take plenty of liquids” meds permitting
@Iain I don’t really understand your reply, other than to say ýou mean well. After recent experiences with my GP, watching Everton is less painful and Everton’s board is more competent than my Gp. If the “Carry On Team” were making a new film, I would be able to provide them a storyline! Although Im hasten to add they may say although a comedy its too far fetched
Anon06,
Sorry if my general response to assessing risk confused.
A doctor/consultant/pathologist can give out all sorts of data but to what aim or gain for the patient? How many on here come away from consultances with as much if not more stress and anxiety than when they went in.
Taking financial considerations out of the scenario what would be the holistic benefits.
Having had Hodgkin 40 years ago and WM targeted treatment now experience tells me that a lot of Cancer patients quickly become savvy in the Latin the Greek and the Pharmaceutical but given a spreadsheet of raw data are overwhelmed, especially if it includes unknowns. E.g. will a vacinne work for you.
I’m 71 and have just been handed over to my 4th GP of my life and all with good communicators/bedside manner.
In '84 all my Hodgkins communication/support came through Heamo/Oncologist. When I went MGUS again it was an Infirmary job. I’ve never had any reason to question my GP. It’s straight to Heamo or 24 hr CNS support.
So is it your GP or your BC team that is your concern? Do both know your concerns and why?l
Hope you can get some satisfaction and advice to allow you to make your own assessments and Quality of Life.
PS. You’ve still got Uncle Ken in the Everton chair. Good or bad?
@Erica@LauranBloodCancerUK@TanyaBloodCancerUK@BloodCancerUK
As it stands I currently can get a loan to pay for private antibody test that will tell me if I have enough antibodies to fight off the Spike Protein, trouble is I am not qualified to read results and have tried all my closest medical avenues to no avail. Am hoping someone can point me in right direction to get my results read.
Well except for my GP, who I would not contact if they were the last person on earth!
I’m not under any immunosuppressent drugs, yet I have 2 on going health conditions and a history of apml twice caught Covid after FIVE jabs, as well as my medical history which makes me vulnerable.
I am sorry @anon06 that I cannot help you, it is not a dilemma that I have experienced.
You know my thoughts on antibody tests.
Look after yourself and take care.
The covid jabs don’t actually prevent you from getting covid, they prevent you from getting seriously ill with covid, and from perhaps ending up in intensive care. Were you seriously ill on the two occasions you had covid? I hope not. And if you weren’t seriously ill, that suggests the combination of your own physical health, along with the covid vaccines you’ve had and the immunity gained from previous covid infections, are all working to keep you fairly well when you get covid (and perhaps spacesuit not needed.)
I’ve just googled ‘covid antibody test result interpretation’ for you, and it seems there isn’t that much to interpret. If you think about it, they wouldn’t take your money then send out a load of data that no-one can understand, because then no one would buy the tests. The tests simply tell you whether you’ve got the number of antibodies needed to be considered as having responded to the vaccine or previous covid infection - so basically what you already know from the GP’s test. There is no test that can tell you whether you will be ok if you get covid (again.)
And the UK Parliament cautions against private sntibody tests anyway, because they are of varying quality, and simply cant tell you whether you will be ok:
Thanks I realise all that I just need to know if I have enough antibodies to fight off the Spike Protein associated with Covid or at least an idea of this, because I just don’t know a thing at the moment
No test can tell you whether you have ‘enough’ - only that you have antibodies or not, and in what approximate numbers. You could have few antibodies but not get ill with covid, or lots of antibodies but still get very ill - because it depends on many more factors than just antibodies.
I realise you are seeking reassurance, but this may be the wrong tool to seek reassurance from. Your consultant would be better placed to explain your risk, I think - particularly as you have had covid twice already, and your consultant presumably knows how ill you were.
To put things into perspective
I’ve put down two areas of concern or scenarios and give myself a question to answer?
,*Scenario 1 Fact
I got Covid after FIVE jabs
since had 6&,7th
I’m anxious how I should live my life without antibody results eg spike protein
Potential Scenario 2
If My full blood count was ok particularly my white cells and neutrophils
Should I take blood results more seriously than being without antibody test?
I can’t answer that with certainty I’m afraid, @anon06. But you say you’ve had covid twice - did it make you very ill? Hospitalise you? If not, you probably don’t have to worry about it much more than the average person.
I took the private test to check my levels of antibodies to the spike protein , I’ve done it several times. I had zero antibodies after my first 4 jabs but the test started to show I developed antibodies with jabs no 5 and 6 (15 months after my chemo treatment finished). I didn’t bother doing another test after jab no 7.
It did give me some peace of mind that I at least knew I was producing some antibodies at last rather than zero antibodies. @Fullofbeans is totally correct that the scientists have yet to figure out what a “good” level of antibodies is to know whether it is enough to help keep you from being hospitalised with Covid. But even so the fact I could see that I had produced some antibodies was meaningful to me . I am also aware that it is not just a case of quantity but quality of antibodies matters too and there is no test at the moment to check for quality.
I would say the format in which you get the test results back is very easy to read, you won’t need a doctor or nurse to help you understand them . I used MonitorMyHealth and for the “S test” , you just get positive or negative shown in the Vaccine Immunity Test column (this is whether you have generated any response to the vaccine), and in the end column you get given a numerical value on antibodies.
As I say the fact I have some antibodies gave me some reassurance but I still do my own risk assessment when I leave the house eg I will eat outside at restaurants but not inside , I won’t take public transport, I wear an FFP3 mask if I go to a hospital appointment. Each of us has to figure out the level of risk we are willing to take depending on our medical situation (eg I know my particular chemo treatment has battered my T cells so I can’t rely on any T cell immunity on top of my B cell antibodies for a while, and I have other medical conditions in addition to lymphoma that I also take into account in making my overall risk assessment)
So I would say if you think you may find the test of interest, of some use, give you some additional “data” in helping you make your own risk assessment then “go for it” (the MonitorMyHealth Vaccine Immunity Test is a fingerprick blood test you do at home and put in a priority Royal Mail postbox). But no one will be able to say you have X number of antibodies in the spike test and therefore you are safe from being hospitalised , so it’s important you manage your own expectations on that aspect.
Good luck in whatever you decide.
