"20% of lyme patients who test positive by culture methods never produce detectable antibodies

Was it one of these?

1:

"Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests."

https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

2:

Multiple studies have shown the two-tiered test for Lyme (ELISA followed by a Western blot) to have extremely high false-negative rates. [9] [10] [11] [12] This is because the test measures our immune response to the bacteria, and Borellia is masterful at disguising itself and changing its outer surface proteins to evade detection.[13]

https://www.lymedisease.org/lyme-disease-myths/

That second one has many sources.

years ago I read an article by Dr Tim Jackson that talked about old vs new infections and he says that there are caveats with the IgG and IgM antibodies. Might want to search for this as well.

Here, just found the link:

https://selfhack.com/blog/tim-jackson-leader-in-alternative-medicine-addressing-the-root-cause-of-chronic-illness-lyme-mold-and-other-pathogen-related-health-problems/

Post Edited (tickbite666) : 5/21/2022 7:39:07 AM (GMT-6)

ref "CDC positive"

even the CDC say that criteria should not be used clinically

https://ndc.services.cdc.gov/case-definitions/lyme-disease-2017/

1st paragraph reads:

NOTE: A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance. Surveillance case definitions enable public health officials to classify and count cases consistently across reporting jurisdictions. Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.

any MD doing so is ill informed - or a quack

hi Rainy

thanks for asking

in a word - LONG

when you set out to explain and catalogue your journey to somebody who is outside of the Lyme aware world, including the reasons you think you may have a tick born illness in the first place, and then support that with scientific references for the things that you state ( that most here would accept as a given - but that most non-lyme aware people would doubt) - it becomes a bit of a monumental task. i included lots of photos of my bartonella slides etc. around 30 pages in the end with lots of photos and 70 references

i ran out of time in the end as also preparing for my house move in about a weeks time - and my GP appointment was last Thursday - and the references were taking forever - so i had to make do.

the guy was a conventional GP in the NHS but at a surgery that has one of the best Care Quality Commission ratings in the country - so they are not bad people - just conditioned in the NHS system.

for instance - despite the NICE ( NHS Clinical rule setting body) guidelines stating that 50% of all confirmed new Lyme cases were in the south east and south west ( where i live) - he was unaware that lyme disease if left untreated can become chronic - his entire experience of it was he had seen 2-3 people with bull's eye rash - had prescribed a few weeks of doxy to each and as far as he was aware that was that.

i talked him through it as best i could in the 20minutes slot available ( that's actually a double session
- and the longest appointment available at a GP in the NHS system - the mismatch between this and the needs of complex chronic disease are stark) - he wanted to help - but did not know how - however he did take my letter away to read - and asked for a soft copy for file (which was one of my objectives).

i could tell he didn't really know what to make of it - though he seemed to find the bartonella slides pretty compelling.
The gp's are really just there as gatekeepers, to treat people for the obvious stuff and refer to specialists for anything else.
The biggest issue is that there doesn't seem to be any specialists in the UK NHS system who treat lyme and co - other than 3 weeks of doxy in the early stages.

has offered to refer me anywhere in the UK NHS
he thinks he has heard of a specialist clinic in the NHS that deals with undiagnosed mystery illnesses and tries to get to the bottom of them - and will try to find it
other than that we can try to find an actual NHS doctor familiar with late lyme disease - but we are both sceptical these exist - despite 8000 people being officially diagnosed each year in the UK
i may reach out to one of the UK patient advocate groups to see if they know of any

i knew it was a tall order going in - as i have tried so many times before - but the bartonella slides are real direct evidence and so might change things - and putting the full story in writing makes GP's pay attention as in the end this is documentary evidence of a patients interaction with GP's - and they are sensitive to there being evidence that they may not have acted appropriately.

crazy the lengths you have to go to to get them to take it seriously

thanks for your help with the references

hope you are doing well

Hi Rainy

i looked at how i had been positioning it in my mind - and to other people, like my family, who asked " what does your GP say" and i basically told them it was a waste of time - that the GP's and the whole NHS are ignorant of the disease and cannot help, as that has been my experience to date, multiple appointments for both my partner and i - and 3 different ID doctors.

then i thought - have a really put that to the test - and really tried to present to them the evidence of what i think is going on - and really test whether they will help.

so i mainly did it for that reason - so i do not write them off, when possibly given the right information they might help.

but realistically my goals were
1, get them to run some more tests for the arrhythmia i have going on that concern me as i would like to be taking macrolides - but am a bit concerned it could be high risk without some further checks of what's going on with my heart

2, maybe they will support me with routine lab tests for liver function etc while i am on antibiotics - even if they will not prescribe them

its also worth mentioning that putting things in writing often gets a different response tan in person - as there is a document trail - and they have to be seen to act appropriately - to those that oversee the GP services.

yeah - i can access labs Rainy - just pressing to see what the NHS can do for me since i have spent pretty much my entire life savings at this point

the latest status is i got in touch with one of the lyme charities in teh UK - to ask if there are any Infectious disease doctors - or specialist clinics in the UK NHS that actually treat long standing Lyme disease - the answer from the charity manager is as follows:

There are no NHS doctors with experience or expertise in treating chronic Lyme. A very few consultants have enough understanding to be sympathetic when a patient accesses private treatment. The closest to a Lyme speciailist that I know of is a Dr SM who works at the Spire Bristol. She appreciates that Lyme exists and needs strong treatment but from what I have seen her understanding is superficial, her protocols brutal and fairly standardised rather than individual and there is no physiological support for the tough treatment. She tends also to limit herself to treating those with positive tests. There is little appreciation of the complex issue of coinfections.
For most people private treatment is therefore the only way to go. The best your GP can do for you is to be in communication with such private specialists and offer the support of NHS testing to monitor your health during treatment, like liver and kidney function tests.

so it looks like its a dead end -

a crazy situation !!!

real "head in the sand" stuff - beyond incompetence and into realms of wilful mistreatment in my book