Lyme or ME/CFS and POTS

in the UK 90% of people with Lyme get told they have CFS or Fibromyalgia - told to get used to it - and sent home with no follow up care -

or if you persevere with pressing for more - you will at most sent to "coping strategy" training to get used to their new life.
both my partner and i both had this
when i asked what scientific basis they were using the the basis of the principles that were being taught on the course - the instructor replied that this was all based on the £5m public ally funded "PACE" trial.

this sounded impressive - but when i looked it up it turned out that this PACE trial paper was falsified by the scientists running it - who then refused to release their raw data - and fought it until it was taken to the UK high court by CFS patent advocates.
The High Court ordered the data released because it was publicly funded research so the public was entitled to see the data - and it was then easily demonstrated that the researchers falsified the data to promote the results they wanted to publish.

i mention it here just as an example of the wrongheadedness and intrenched views that are present in conventional medicine in general - and in rheumatology and psychology in particular - where there is very little real hard science of cause and effect - and it is therefore dominated by opinion, baseless theory and dogma.

because of this the average time to Lyme diagnosis is many years and 10 or more different doctors

i don't know if its the same in Germany - but all CFS doctors in the UK are actually Rheumatologists - which is a very strange branch of medicine - as they have no paradigms of what causes ANY of the diseases that they treat ( other than its auto-immunity - caused by some unknown - or something that "just happens to some people" - which are NOT EXPLANATIONS) - and who's only goal therefore is to manage symptoms - often by prescribing immune suppressing drugs - which for diseases without clear identified cause (and therefore could well be infectious in nature) is deeply problematic from a logical perspective.

We also know immune suppression drugs exposes patients to increased risk of morbidity and mortality from numerous other causes.

They are ensconced in this world view that there are no known causes for what they treat - and therefore it cannot be infection - and therefore their chosen path of symptom suppression only treatments are the only way to go - its a self fulfilling prophecy with circular logic.

rheumatology is also where they send lyme patients - which is crazy - as these people by their own admission know nothing about the disease( i discussed it with the head of the department of the national hospital for rheumatic diseases) - so again the logic is deeply troubling.

ref. the old rule of thumb for simple conventional acute infections of - IgG past infection/ IgM recent Infection does not hold for complex chronic infections like Lyme disease. all infectious disease doctors know this
ask them why they do not use serology to detect tuberculosis for instance ( another chronic bacterial infection) - and instead have to rely on chest x-rays.
or why all test from official NHS infections disease labs come back with the rider that says "serology is unlikely to be diagnosis tic for symptoms lasting 6 months or longer"
or why the NHS has withdrawn all serologic testing for bartonella in the last year of so - and not yet replaced it with anything at all
even the conventional medical establishment admits there are no tests that can reliably rule out Lyme disease and negative tests should not be used to rule out disease. but doctors still routinely do exactly that.

so in general - there is so much wrong with the understanding and care of Lyme disease and associated illness in mainstream medical institutions it is normal to get outright erroneous diagnosis, dogma driven statements without good scientific basis, outdated lyme related information, and conflicting views.

in my view they should still be used to perform routine tests and to rule out other possible diagnosis for things they do actually understand reasonably well and could be explanations for symptoms, like acute illnesses, imaging scans to check for structural issues, routine blood tests, investigations with clear diagnostic value - which could rule out other potential causes - but all input on chronic disease needs to be put through the above context filter.

yep - its hard to understand

my best guess is that lyme and co was flying under the radar in the USA for many years - seen as a rare disease - and not in the health insurance companies forward projections - then with the increase in cases - somewhat better testing - Government bills passed and more research being done - the real size of the problem started to emerge.
but the health insurance companies in the USA (a 1.7 trillion dollar business annually - that's over half the UK GDP!!!) do not have the cost of this difficult to treat long term expensive illness in their profit projections - so my guess is they have worked to muddy the waters by funding contradictory research, lobbied and the CDC and prominent scientists to make statements and basically keep the science on Lyme in the dark ages for fear that their profits might drop.

most European countries look to the USA CDC as their guide to infectious disease policy and basically copy and paste - so we all get carried along - even though we have mostly publicly funded medical systems.

in my experience doctors are often not very bright people - but they have spent 6 or 7 years getting an education for a well paid and guaranteed for life job as long - as they don't rock the boat - and as such tend to be risk averse and dogmatic in their beliefs.

One of which being, a strong belief that what they are taught is right and should not be challenged.

in reality, what most are taught about Lyme in medical school is about 3 paragraphs - and most of that was wrong!

as an example - i waited 4 months to see a well known infectious disease doctor in London - at a prestigious university hospital
the three reasons that she told me i couldn't have lyme all turned out to be utterly false, according to easily accessible published data.
1, that "we don't have Lyme in the area where i lived" ( i was in the south west of England - and the
governments own data showed that 50% of all cases came from the south west and south east of england)

2, that if it were lyme - my inflammatory markers would be extremely high and they are not - so i cannot have lyme. She was referring to CRP and ESR - both are actually very often low in chronic Lyme - especially if not severe acute arthritic symptoms.

3, that if i did have Lyme i would be both much more sick and "on a rapidly descending staircase of worsening symptoms" - again this is not the case - many studies show chronic lyme tends to be a much more steady state illness for many people - several studies have shown a significant proportion of patients (over 40%) are able to (or have to work) at least part time - so clearly not more sick than me or rapidly worsening.

this was very disappointing to me - as i had waited a long time to see an ID doctor - and desperately wanted answers.
instead i was basically confronted with ignorance - and yet the doctor confidently believed what they were saying was true.

it was shocking to me too

yep - in fairness the tale i recount was 8 years ago now - so perhaps things have moved on in terms of awareness and doctor education.

this community has been nothing but helpful and friendly.

in germany we have this thing called "house doctor" wich is basically the main basic doctor you go to for basic needs and stuff. he is the guy that says my lyme diagnosis is bullcrap etc.

then i have this "kind of" LLMD wich isnt a llmd in the literate sense because he still is a doctor from the governmental contract but atleast he knows chronic lyme exists and therefore he allows extended therapies to happen but not as good as a fullblood LLMD would do. basically you could call him a mini-LLMD. better than nothing i guess. harry potter and the halfblood LLMD lol.

i will now try and go detox first because my symptoms got so freaking worse on azithromycine and artemesia i felt like dying. my HRV was at 13ms wich is close to death i suppose lol. resting heart rate was at 100-110.

Now I stop medication for 2 weeks (after taking abx and plant based stuff for 10 weeks) and try to go detox on MSM, epson bath, chlorella, probiotic and vitamins.

after that i will go for a broad test of heavy metals and co-infections wich is costy but i actually made a crowdfund happen here in my city for my treatment wich turned out to actually work.

best of wishes for all of you - nothing but love