Few questions on Lyme and coinfections

Hi Bhava

i will answer where i think i can offer something - even if only a little

1, in reality i think there is unfortunately no way to know for sure
its more a case that some infections seem to be known more for neurological conditions than others
and there may be some general leanings in symptoms which might offer clues - but its not a precise science - and we should bear in mind that any description of such things will be something of a caricature - or a stereotype - where real individuals will be far less clear cut - but such patterns might still offer clues:

-bartonella in particular is associated with neurological issues in the CNS - typically involving disturbed mental states - like fear, rage, depression / manic cycles -paranoia and even frank psychosis (especially in adolescents it seems). excitotoxicity is common - so escalating feelings of panic, fear or rage that have a runaway quality maybe typical

-lyme also - symptoms as we know can be highly variable -and there can be a lot of overlap with symptoms of other infections - but MS like symptoms seem common as that is a common misdiagnosis for lyme patients. Dr J also described in detail lyme affecting the functioning of the limbic system of the brain

-perhaps Chlamydia Pn in some people

-herpes viruses - some of the time- but not in the majority of cases i think

-babesia - slowed thinking, slowed reaction times, mental fatigue

one might also draw conclusions after the fact - about which treatment seemed to work best - although most treatment are active across more infections or mechanisms than is typically assumed to be the case so this is often also less than clear cut.

in the end it might be more a case of piecing together a number of clues to form a tentative conclusion

2, this is a little more clearcut
Dr J pioneered xylitol ( and lactoferrin taken together ) for biofilms - based on its use topically in conventional medicine for burns wounds infections
his dose was 1 heaped teaspoon ( 6g ) 2x a day on an empty stomach - with lactoferrin 500mg 2x i think

my view is that its best to take several biofilm agents together as biofilms are made of many different substances so its best to target them from different directions simultaneously
many organisms have redundancy in their biofilm forming genes and can switch to alternative proteins etc
xylitol seems to act as a food which they cannot make proper structural elements of the biofilm from - hence weakening the biofilms and allowing immune systems better access to the bacteria
proteolytic enzymes such as bromelain, lumbrokinase, serapeptates, nattokinase etc directly dissolve proteins in the extracellular matrix ( biofilm material) - weakening it by that mechanism - achieving a similar result to the above
essential oils are both directly antimicrobial and have some antibiofilm properties - though i dont think we know yet how exactly they do that - it seems fair to assume its vai a different mechanism to the above - perhaps by acting on the integrity of the bacterial cell walls - even on persister cells inside biofilms ( this seems to be the mechanism of antimicrobial action)

tolerability - and max safe dose appears to be the best guide to dosage

most people with chronic lyme and co struggle to tolerate suggested doses right off the bat - so its more a case of taking what you can tolerate and gradually building up.

target doses are largely just what have been used by LLMD's arrived at empirically via their experience
12g a day of xylitol for instance
and around 150mg of carvacrol content seems about the norm for oregano oil

be aware that 4 out of 5 oregano oil product i have tried have had false labeling information so doses were totally unreliable - up to 10x less than label described

3, i have no direct experience - But i would be cautious of potential liver damage in long term use - especially alongside other antibiotics / pharma drugs that place a load on the liver. And use regular LFT / safety labs.
i would perhaps look into topical alternatives which can be useful in herpes virus flares - buhner had some suggestions i think.

i hope its of some help

Dear Garzie,
I d like to respectfully ask few more questions, if it is possible.

1. Does Xylitol work also without lactoferrin against biofilm or it has to be taken together?
2. Those who are on Buhner's herbal protocol - without abx - are biofilm busters, NAC and other supplements used or recommended in the context of that protocol too?
3. Could taking high dosages of cryptolepis and other herbs be sufficient to lead to remission? I have tried it few times but have always failed. Yet I have a hope that perhaps one day I won't be needing any abx - once symptoms do not come back after their suspension. Sofar it always relapsed.
4. Do you have any experience with pectasol?
5. Can the amount of carvacrol in oregano oil can sufficiently be measured by the is "strenght", eg burning sensation in the mouth?

Thank you, best wishes, B

Dear Garzie,

thanks for your answer. It is very helpful. Me too, any time I have tried to stay with herbs only, symptoms tend to get gradually worse. Herbs alone unfortunately do not work for me as a herbal mono-therapy.

Which herbs are you taking now, along with abx? And which supplements?

Best wishes, good luck
B

Dear Garzie,

thanks for your answer. I can understand your points and it does make sense.

I felt almost symptom-less recently, and suspending abx after 5 days my old good sympotms start to re-occur. Now resuming abx I m herxing quite a lot, to my surprise.

Some say one needs to continue abx at least 2 months more, even after all symptoms are gone and have it confirmed from tests.

Over the years, Buhner's protocol have always failed me as mono therapy but still I do take herbs, quite similiar to what you have mentioned. (2-3 times every year I try to stay only with herbs with hope it will be sufficient but sofar did not happen.)

Still I consider abx as main healing agent. Perhaps I need to have perseverance and continue slowly but steadily in a consistent way.

I do have a question - for example Dr.H seems to be saying that stronger abx combination (eg 4,5+ abx) is more effective than less abx combo (2,3 abx). Also Dr J - what Girlie wrote in the other tread - gave her several abx combo. Anyway as you are saying - one tries and sees what seems to work and stays with that. It seems that for some people works aggressive and severe protocol, for others not. But perhaps one can only know by trying and seeing for oneself. To undo persisters, and get rid of bacteria thoroughly, I have been wondering, whether slow and consistent treatment works better or more tough and aggresive one, such as high dose dapsone p.

Best wishes, good luck
B

there is some evidence that very heavy doses of persister drug combinations - eg as per Dr H and his High dose pulse dapsone therapy ( typically has high doses of dapsone, methylene blue and at least one other persister drug ) can produce remission in a reasonable proportion of stubborn chronic lyme cases.
however, he is now talking about 6 or more such pulses for patients with bartonella as well as lyme - so its effectiveness is not uniform - or in any case quick if bartonella is present - as it seems to be for the majority here.

so his approach is to try to shorten treatment times by using harsh high dose approaches - with some success in a subset of patients.

other approaches like Dr J - are following a different philosophy - basically accepting that there is no fast cure - and instead uses a sustained longer term strategy - still with multiple antibiotics including persister drugs - but with less extreme protocols - to achieve the same result

one option to consider - is, as per Dr J, where he uses the herx reaction to treatment as one way to gauge when treatment is sufficient.
so for instance - when a patient stops reacting dramatically to his persister protocol - he transfers them to a 3-4days per month dosing maintenance protocol - and as recovery continues - eventually, if all goes according to plan, they stop reacting to those 3-4 days and can extend the weeks between doses and then eventually stop all together - as this indicates the immune system has taken over properly.

i hope its of some help

Yes. Or - ref which approach to follow - which infections are present

As, if bart is present, it doesn't look like Dr H’s approach has the short treatment advantage. Or at least not as much of a difference.

Hi Bhava
its a good question - worth some discussion i think

unfortunately - as with so much of lyme treatment - we don't have controlled trial to demonstrate this stuff one way or another - so i will give you my opinion - and try to flesh out a little bit of why i think that

i do think there is some merit in the holistic thinking or approach

if we look at most of the top LLMD's, especially the ones who treat the most chronic / tough cases, then they have some version of this:
-Dr J has videos describing i think 19 or 20 blocking factors that he says if not corrected can lead to treatment failures
-and, as you mention, Dr H has his 16 point MSIDS map

the lens i would view these blocking factors through is to view them as insults to and dysrupters of the immune system

we need our immune systems to be functioning to make a recovery ( otherwise we would have to take antibiotics for life) as the immune system always has to resolve the remaining infection and keep it from re-occuring

of course, the infections themselves are major immune dysrupters - but tackling those takes time - and the other things are in the mix and working against us in the meantime - so things like leaky gut, poor sleep, stress,etc ( and all the other things on the LLMD's blocking lists - as these are all immune insults)

so the way i would think about it is - in order for the patient to recover - the majority of these - need to be resolved or at least pretty much resolved / under control.
i dont think they need to be perfect - but they need to be under control / managed to the point where they are not major detractors to the patient's immune system.

i think in individual cases - these blocking factors can definitely be enough to make the difference between recovering or not recovering

people with MCAS for instance often struggle to make progress till that is controlled
in my case i made little or no progress until i changed my diet to Keto as that brought my leaky gut type symptoms under control, and presumably allowed my immune system to focus more on fighting the infections - rather than my last meal.

of course, if its not just a case of popping antibiotics to get well - this then widens the scope of the main "how do i get better" question - and its not always obvious which blocking factors might be at work in our individual cases. some detective work is required.

one approach would be to do a kind of inventory check against Horowitz's list and prioritise addressing the top 2 or 3 that you may want to dig a bit deeper on. i dont think you need to go super deep on everything initially. its very unlikely any given individual has all 16 of Horowitz list impacting on their case.

i also think our lifestyle immediately before we became ill often yields some clues as to why our immune system didn't fight the thing off .
People often report falling ill with lyme after a particularly stressful period in their life - this was true in my case - combined with very poor sleep habits - an obvious double whammy in retrospect - so these can be clues for what one might need to address.

i hope it's of some help

Dear Garzie,

thank you for your answer. Which other aspects or points Dr J mentions, or do you perhaps have a link on his YouTube video, where he is discussing it? ("Dr J has videos describing i think 19 or 20 blocking factors that he says if not corrected can lead to treatment failures ")

I m having mainly neurological problems. Perhaps I will need to choose 2-3 areas and try to work on some improvements, as you suggested. Over the years I have been thinking that right combination of abx is among the most important while other aspects are supportive or secondary if even less important.

Perhaps also what Dr.Nathan Neil says about infected brain and nerve system, mainly vagus nerve, brings a sense of being constantly under a threat, in a defensive mode, never feeling really safe and not being able to relax completely, which prevents IS to function properly, this kind of idea that he presented on lyme summit this year.

Many of these aspects are quite hard to diagnose, eg MCAS. If one does not clear understanding neither experience, its more like a guesswork for someone like me.

In any case at least basically if one is going the right direction, there is some progress at least not getting worse.

Best wishes
B

Dear Garzie,

thank you for your answer.

Thanks for clarifying the background of Dr J. - his ways of doing things. It seems he is not such a scholarly person or outspoken like others and also his informations and knowledge are more harder available.
I am looking at some of Dr. J youtube videos, but it will take time. In any case it is very helpful, what I have been sofar able to see. Allways many things to learn and geet deeper, or from other persective. In any case he does seem to have profound experiential knowledge. I believe he can contribute to worldwide lyme community.

The question and issue of ones pattern of thinking, is huge. I still need more self-observation and self-reflection, but definitely I m running on particular patterns. In the context of Lyme and co the problem is confusion, there is not proven, functional treatment, so basically its about trying and seeing for oneslef what seems to work. Unfortunately also LLMD's in my country are far in the past and it seems to me they cant really help people to get into full remission with complicated co-infections like 3 B's. Therefore those who appear to be authorities and have a great deal of knowledge and experience, are sought after. In particular those who open and actively publish on various aspects from diagnostic to treatment like Dr RH, MR, JB, etc - what they say and claim has some authoritative value - but again the truth I can see only within my experience. So taking the protocols they are suggesting I can what helps and what does not. Also its a continuous learning process, and learning often times from mistakes. This whole area is so complex.

May I ask - does Glutathione has to be taken on empty stomach, and if taken with anything else it basically does not have much effect? There seems to be various opinions.
From what is sure to be taken like that is Rifampicin that taken with food reduces effectivity 30-40 percent.
And herbs generally before meal, at least 15-20 minutes. We have discussed about it previously, I think.

Best wishes, good luck
B