Urgent - We the public need your help for better Lyme Disease and co-infection testing. 

Do you the public think we should have the right to proper medical testing? One that could tell you with great certainty that you have an infection or a disease? YES you would. 
2) Would you be happy with a test that couldn’t detect Malaria if you had caught it? 
Your answer would be NO, as you expect a decent test to detect it  so you can get the right treatment well it’s the same with Lyme disease we want a better and improved test, read on and please support us, we thank you  

The current Lyme disease test is missing hundreds of thousands up and down the Country within the Uk. Why is this? 
We want a test that can tell you with great accuracy it you have Lyme disease or perhaps another infection like relapsing fever or any other of the SERIOUS known co infections I have listed below.  
At the moment we do not have this test or it’s not routinely tested for if you have Lyme like symptoms,  it’s important to note Medical Professionals have to rely on these tests! 

We want a test that would detect all known species and co infections at the same time in all stages of infection from early right through to disseminated or later stage disease. Again we don’t have this test. 

Did you know you could have Lyme disease and several other associated infections, be very sick and test negative on the current nhs test?  
Of course many people never notice they have been bitten by a Tick, until that is too late due to symptoms being a lot like a virus or very flu like to start with.

Not everyone will get an EM rash or may even carry an infection that doesn’t even show a rash.
Your infection may not be picked up!

It’s 2022  Infected Ticks are everywhere according to the “ big Tick project

Sadly when it comes to many Lyme like illnesses, they are being mis- diagnosed as other illnesses which are equally life changing and serious such as cfs/me, MS, heart conditions and there had even been cases of ALS.  This list grows daily according to Lyme disease charities. Misdiagnosing is happening all because the TESTING is NOT accurate. 

I will now list the infections that are known about in the Uk that we know are not routinely tested for. This isn’t a full list either. 
We can’t possibly list all the strains of Lyme disease so for ease it will just be written as Lyme disease as the US has detected more than 300 species! 
The most common co-infections reported from Ticks from the Lyme disease Charities in the UK for 2022 and before that are: 

Lyme disease - various 

Anaplasmosis

Babesiosis microti, B Duncani and  B  Divergens 

Bartonellosis 

Ehrlichiosis 

Rickettsiosis 

Tick-Borne -Relapsing Fever(TBRF)  

Miyamotoi

We require testing to be able to detect ALL of the above’ 

We also require testing to be able to differentiate between early Lyme disease and co infections and late stage Lyme disease including testing for all known co infections. At the moment we do not have this test. 

We will ask the the Government to consider the use of LTT tests or similar alternative testing for those patients that are seronegative.  We could like them consider a Multi species Urine test to aid in the detection of these co infections  

Now I will list only a FEW of the  reasons why testing must be improved  or changed. This is by no means a FULL list! The current test has many pitfalls  please do not forget that we the PATIENT SUFFER because of this testing! 

1) Antibodies are present, but the laboratory is unable to detect them. Tested too early,  the blood test is taken too soon after the tick-bite for antibodies to develop. 

2) Testing is not standardised for late stage disease it  may detect early disease only after antibodies have developed after the correct length of time and only certain species will be picked up! 

3) Antibodies may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken a course of antibiotics resulting in reduced antibodies or have a species not included in the testing, the list above is only examples  

4) Some of the worst cases of Lyme disease test negative. Immune system struggling to produce antibodies  as they may have multiple co- infections at the same time as Lyme like infection which are not currently tested for like for example TBR fever and or a Miyamotoi strain, Babesia microti would be another. 

 5) May be co- infected with various co infections including all those listed above which may cause immunosuppression therefore no antibodies will be detected or reach the appropriate levels for testing add to the fact they are not being routinely tested for anyway! May also have an infection like TBRF that’s not tested for. 

  6) Antibodies may not be present as the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.  

7) Antibodies may not be present in detectable levels in a patient because the patient could be immunosuppressed for a number of reasons, therefore the immune system is not reacting to the bacteria.or patient may be on immunosuppression medications, recent anti inflammatory treatment. and or genetic reasons. 

8) Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system. Also no spirochetes in body fluid on day of test as spirochete are deep in the tissue. There are numerous research papers to show this biofilm - cyst form, spirochete deep into tissue,  this does not apply to early infection  

9) Antibodies may not be present in detectable levels because the laboratory has raised its cut off too high or reduced the bands required. Patient may not be producing the right bands  

10)  Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 

If you have made it this far, thank you for reading  please help us get our voices heard  

On behalf of all the infected  Children, adults, Aunts,Uncles,Cousins,Brothers and Sisters, Mums and Dads, Grans and Grandads your friends and others  

We thank you for signing and sharing this