Anyone heard of this EBV treatment and DR??

[Garz]

it was Horowitz i think

according to his published study his questionnaire worked OK statistically - but its predictive value in each individual is not enough to be conclusive - it could perhaps give you a good reason to go further down this rabbit hole, rather than a different one, if you had a very high score,

unfortunately, these questionnaire approaches can never be definitive due to them really only tracking associated symptoms - so it is a measure of association - not causation. many illness share many symptoms - for instance i think most people with CFS would score high enough to be in the "high risk of Lyme" group.

the thing about testing is that the tests performance for most tests seem to be highly asymmetric - due to assumptions used by the people who design them and the cut off points chosen - eg for lyme false negatives are around 5-8x more common than false positives - so if you do get a positive you can be pretty sure its a true positive - esp if combined with symptoms patterns - reactions to treatments etc so in that sense positive results can be meaningful and useful
conversely - due to the high false negative rate - negative results have v little diagnostic value(meaning).
not many people get the asymmetry.

better test are being developed - there are now multis species Babesia tests including a multispecies babesia immunoblot - which can detect anything in the genus - so that's a step forward
similar are available for bartonella - and galaxy diagnostics now has a pretty sensitive test for it using 3 separate blood draws then culture and pcr. its a good test - many times better than a standard Bart IFA or Elisa - but it is expensive.

in my experience one can only get so far with a general approach before you need to focus on specific approaches for specific infections ( this may not apply to everyone - but certainly a large fraction of chronic patients ) - and this is where knowing what you are dealing with becomes invaluable

i didn't have lots of money either - that is why i have had to learn how to do everything for myself

ref my approach - these are very tough infections to shake - especially after you have been ill for some years.

my approach to treatment has involved changing every aspect of my life towards optimising health.

its key to understand that you cannot just pop pills or herbs and get better from this thing
we have no drugs that will do that.

instead it takes an overall focus on every angle you can work on to move yourself forward
the healthier you are - the better job your immune system will do of getting on top of the thing.
that is the actual goal - the herbs and drugs cannot eradicate the microbes -just reduce thier number and nudge the scales a little in favour of the immune system - so they are just tools to help get to that point where the immune system can takeover.
but they are not the only tools - they may not even be the most important ones

• sleep
• exercise
• diet
• stress levels / mental framing

are all huge in terms of overall health and recovery - if these are not at least decent / good - a person will not recover

in my approach the things that have helped me the most are as follows - in order

• a Wholefood Ketogenic Diet(helps gut issues and energy - takes the load of the immune system so it can do more of what its supposed to)
• Exercise – initially walking – now weights too - very important (no aerobic exercise beyond walking = PEM )
• Buhner Lyme herbs per second edition of his healing Lyme book
• Buhner co-infection herbs - as per his earlier books
• Methylene Blue (for Bartonella - per Johns Hopkins research )
• fibrinolytic enzymes - bromelain and lumbrokinase for bartonella fibrin build up
• Immune modulation- Ivermectin and LDN
• T4 and T3 combination therapy for thyroid/ hashimotos ( bart caused auto-immune thyroid disease and thyroid also controls immune function - so it needs to be corrected as best you can )

the above got me to 50-60% recovered and probably still gradually improving - but my life is passing by still not able to work ( i was very ill)

so i am now adding antibiotics pulses 2 weeks on 1 week off to see if i can move forward a bit faster

it is a non trivial challenge to get over these multiple infections - and what is needed may seem alien to many who cant quite believe its really that hard - or don't want to believe its that hard - but i am committed to getting my life back, whatever it takes - and the progress so far tells me i am on the right track.

i have seen some people get better with less
but i have also seen people do more and still be ill

hope its of some help

all the best!

 

[heapsreal]

it was Horowitz i think

according to his published study his questionnaire worked OK statistically - but its predictive value in each individual is not enough to be conclusive - it could perhaps give you a good reason to go further down this rabbit hole, rather than a different one, if you had a very high score,

unfortunately, these questionnaire approaches can never be definitive due to them really only tracking associated symptoms - so it is a measure of association - not causation. many illness share many symptoms - for instance i think most people with CFS would score high enough to be in the "high risk of Lyme" group.

the thing about testing is that the tests performance for most tests seem to be highly asymmetric - due to assumptions used by the people who design them and the cut off points chosen - eg for lyme false negatives are around 5-8x more common than false positives - so if you do get a positive you can be pretty sure its a true positive - esp if combined with symptoms patterns - reactions to treatments etc so in that sense positive results can be meaningful and useful
conversely - due to the high false negative rate - negative results have v little diagnostic value(meaning).
not many people get the asymmetry.

better test are being developed - there are now multis species Babesia tests including a multispecies babesia immunoblot - which can detect anything in the genus - so that's a step forward
similar are available for bartonella - and galaxy diagnostics now has a pretty sensitive test for it using 3 separate blood draws then culture and pcr. its a good test - many times better than a standard Bart IFA or Elisa - but it is expensive.

in my experience one can only get so far with a general approach before you need to focus on specific approaches for specific infections ( this may not apply to everyone - but certainly a large fraction of chronic patients ) - and this is where knowing what you are dealing with becomes invaluable

i didn't have lots of money either - that is why i have had to learn how to do everything for myself

ref my approach - these are very tough infections to shake - especially after you have been ill for some years.

my approach to treatment has involved changing every aspect of my life towards optimising health.

its key to understand that you cannot just pop pills or herbs and get better from this thing
we have no drugs that will do that.

instead it takes an overall focus on every angle you can work on to move yourself forward
the healthier you are - the better job your immune system will do of getting on top of the thing.
that is the actual goal - the herbs and drugs cannot eradicate the microbes -just reduce thier number and nudge the scales a little in favour of the immune system - so they are just tools to help get to that point where the immune system can takeover.
but they are not the only tools - they may not even be the most important ones

• sleep
• exercise
• diet
• stress levels / mental framing

are all huge in terms of overall health and recovery - if these are not at least decent / good - a person will not recover

in my approach the things that have helped me the most are as follows - in order

• a Wholefood Ketogenic Diet(helps gut issues and energy - takes the load of the immune system so it can do more of what its supposed to)
• Exercise – initially walking – now weights too - very important (no aerobic exercise beyond walking = PEM )
• Buhner Lyme herbs per second edition of his healing Lyme book
• Buhner co-infection herbs - as per his earlier books
• Methylene Blue (for Bartonella - per Johns Hopkins research )
• fibrinolytic enzymes - bromelain and lumbrokinase for bartonella fibrin build up
• Immune modulation- Ivermectin and LDN
• T4 and T3 combination therapy for thyroid/ hashimotos ( bart caused auto-immune thyroid disease and thyroid also controls immune function - so it needs to be corrected as best you can )

the above got me to 50-60% recovered and probably still gradually improving - but my life is passing by still not able to work ( i was very ill)

so i am now adding antibiotics pulses 2 weeks on 1 week off to see if i can move forward a bit faster

it is a non trivial challenge to get over these multiple infections - and what is needed may seem alien to many who cant quite believe its really that hard - or don't want to believe its that hard - but i am committed to getting my life back, whatever it takes - and the progress so far tells me i am on the right track.

i have seen some people get better with less
but i have also seen people do more and still be ill

hope its of some help

all the best!

With testing I guess I'm factoring courier costs from Australia. A few years ago looking into just sending bloods, which had to be there within a certain time period, was costing over a $1000 and I'd guess probably more now? I forget, being in Europe, you are close to many countries or if able to can flt to another country for testing and treatment. We are alot more isolated down here unfortunately.

I think we are attacking things very similar. I use the SHINE outline from Fatigue to Fantastic book, not necessarily his treatments. The title is over kill though. But basically SHINE is Sleep, Hormones, Infections, Inflammation, Immune System, Nutrition and Exercise. Then I work around other things like sleep and pacing.

I'm a big believer in pulsing and alternating infection treatments to avoid tolerance but also toxicity.

I think time is the big thing with treatment. Many don't realise it can take months and years.

 

[Garz]

couriers - most antibody based tests - like the immunoblots for instance - are viable for around 5+ days i believe - FedEx do a 3 day door to door service au to USA - so that should not be price prohibitive

yep - the shine protocol / Teitlebaum book is good as a basic plan - its pretty rational. i think he is a decent old school doc capable of thinking for himself.
but if you are really dealing with an infection - its light in that area

Horowitz's second book "how can i get better" is much more thorough and practical in terms of actionable steps for chronic infection

in host development of antimicrobial resistance is not really a thing we need to worry about
as true microbial resistance is not developed in many individual hosts separately - but developed extremely rarely and then spread around the world via pressures of natural selection.
and some of the target microbes do not develop resistance at all - as they rely on persistence mechanisms instead. for instance borrelia have never developed true resistance in any forced resistance experiments in the last 50 years

microbial persistence on the other hand is a very real challenge this is achieved via several mechanisms
some or all of which are adopted by all bacteria capable of chronic infection - but do not involve new genetic mutations to confer tolerance - as its the product of existing adaptations that have been present for millennia
its the main thing that stops us treating successfully with 2 weeks of antibiotics

mechanisms are:

• intracellular and in host "sheltering" - where the bacteria ( or other microbes) are able to live inside cells or other environmental niches inside the host that shelter them to a greater or lesser degree from the drugs we try to treat them with - drugs that target intracellular spaces as well as extra cellular are needed
• persister cell formation - most bacteria are able to enter a low metabolic state - where they are not metabolising things from outside - and not growing - and in this state because they are not metabolising - and not using the genes/pathways that antibiotics target - they are demonstrated to be 1000x more tolerant to antibiotics - so it becomes impossible to take enough herbs / antibiotics to kill them all. The small population of persisters survive - and reactivate when the drugs are taken away again. some evidence exists that pulsing repeatedly stresses the microbes more than continuous dosing. some drugs are known to be more effective at targeting persister cells than common antibiotics.
• biofilm formation - this is much misunderstood - most think its a physical barrier to antibiotic penetration - in reality we have known since the work of the 1970's ( ref Prof Bill Costerton )that antibiotics penetrate biofilms quickly and easily. the real mechanisms at work are
  • 1, biofilm formation and persister cell formation are highly associated - so all biofilms contain higher proportions of persister cells - and pleomorphic cell types that are not reliant on the genes and pathways that common antibiotics target - and hence they are not effected by them and these are almost immune
  • 2, additionally biofilms do present a physical barrier to immune cells like macrophages - which can only nibble away at the outsides of the colonies - and as such cannot easily eradicate biofilm forming infections. biofilm disrupting agents can significantly improve immune clearance and may also induce bacteria back into planktonic forms which are susceptible to common antibiotics/antimicrobials

again i hope its of some help

it is indeed a long term project - but improvement along the way is expected - so there is some reward for our endeavours to help keep us motivated