How to heal your endothelium….

[Hoosierfans]

The more and more research coming out in LC and ME / CFS, it seems our endothelium layers are a major problem. They keep our blood flowing and blood vessels working properly (hello POTS / OI / dysautonomia!), our lungs absorbing oxygen, our BBB intact and our GI system from leaking all sorts of nasties into our bloodstream which leads to mast cell issues, food intolerances, inflammatory reactions, vagus nerve issues and more.

So the million dollar question — how to we heal our endothelial layers. Anyone have any strategies?

I have the ETAR1 antibodies, so I am sure my endothelium’s are under attack.

 

[sunshine44]

Stephen buhner talks about endothelial dysfunction in some of these states quite a bit. It’s the most I’ve ever learned on endothelial dysfunctions although maybe there are others out there talking about it I don’t yet know of.

Here’s a snippet of his chapter that talks much about endothelial dysfunction…

“POLYGONUM CUSPIDATUM:

The main traditional use for this herb is for invigorating and clearing the blood and reducing heat (inflammation). It is considered antipyretic, detoxicant, anti-inflammatory, anti-rheumatic, diuretic, expectorant, anti-tussive, stastis eliminating and channel deobstructant...

Neurological effects: The root has been found to be a very specific inhibitor of CD40 expression on endothelial cells, primarily by inhibiting TNF-alpha activation of its expression. This protects endothelial junctions from degradation, significantly enhancing TEER strength. The herb also inhibits senescense in endothelial progenitor cells (EPCs), essentially through increasing telomerase activity. EPCs are crucial for endothelial health in that they are integral to endothelial repair after injury. In vivo studies have found that in the brain, the herb has a stabilizing and regeneration effect on endothelial cells protecting from recurrent strokes. The strength of the blood brain barrier is significantly enhanced when the herb is used.”


Here’s the book where you can find much more. https://www.thriftbooks.com/w/heali...RoCtMYQAvD_BwE#idiq=18569378&edition=13145871

 

[Hoosierfans]

Oooh thanks so much! We just did some blood work and my SCD40L was sky high….like upper range was 10,000 and mine was 39,000!! My PCP was like oh boy, let’s call hemetology (she’s chatting w colleagues now).

I will definetly add this to my list to look into, but it sounds like exactly the kind of tool I need in my toolkit. Thanks so much!!!

 

[Hoosierfans]

@sunshine44 do you know if Buhner advocated using Japanese Knotweed as a whole herb or resveratrol supplements (when I google most of of what comes up is resveratrol). I’ve tried that several times in the past with no good effect…so I’m wondering if I should use the whole herb.

Or if it’s the resveratrol doing the heavy lifting then maybe it’s just not for me. 😢

 

[Hoosierfans]

@Hip @sometexan84 @junkcrap50 @Learner1 @Sushi @mitoMAN — tagging some people who are incredibly knowledgeable on a wide range of topics to see what ideas are out there. 😃

 

[sunshine44]

@sunshine44 do you know if Buhner advocated using Japanese Knotweed as a whole herb or resveratrol supplements (when I google most of of what comes up is resveratrol). I’ve tried that several times in the past with no good effect…so I’m wondering if I should use the whole herb.

Or if it’s the resveratrol doing the heavy lifting then maybe it’s just not for me. 😢

Yeah, he specifically states resveratrol alone won’t do it. Also, he talks about MANY herbs that help heal endothelial dysfunction. Not just knotweed.

I will try to take a picture of the chapter as it’s too long to paraphrase it all here.

 

[sunshine44]

Here is part of it

 

[eddyrms97]

Stephen buhner talks about endothelial dysfunction in some of these states quite a bit. It’s the most I’ve ever learned on endothelial dysfunctions although maybe there are others out there talking about it I don’t yet know of.

Here’s a snippet of his chapter that talks much about endothelial dysfunction…

“POLYGONUM CUSPIDATUM:

The main traditional use for this herb is for invigorating and clearing the blood and reducing heat (inflammation). It is considered antipyretic, detoxicant, anti-inflammatory, anti-rheumatic, diuretic, expectorant, anti-tussive, stastis eliminating and channel deobstructant...

Neurological effects: The root has been found to be a very specific inhibitor of CD40 expression on endothelial cells, primarily by inhibiting TNF-alpha activation of its expression. This protects endothelial junctions from degradation, significantly enhancing TEER strength. The herb also inhibits senescense in endothelial progenitor cells (EPCs), essentially through increasing telomerase activity. EPCs are crucial for endothelial health in that they are integral to endothelial repair after injury. In vivo studies have found that in the brain, the herb has a stabilizing and regeneration effect on endothelial cells protecting from recurrent strokes. The strength of the blood brain barrier is significantly enhanced when the herb is used.”


Here’s the book where you can find much more. https://www.thriftbooks.com/w/heali...RoCtMYQAvD_BwE#idiq=18569378&edition=13145871

While the endothelium does play a significant role in the dysfunction of blood vessels and oxygen delivery to tissues, I believe that the root cause of these issues extends beyond the endothelium. For many of us, there is a fundamental functional and/or structural problems within our blood vessels, whether they be due to issues in the endothelial layer, smooth muscle layer, connective tissue layer, or nerves. These issues cannot be effectively resolved by simply supplementing with even the most promising substances, even if they have been proven in numerous studies to fulfill their claims. When the foundational problem persists, applying a band-aid approach will not address the underlying cause. Let's assume that a particular supplement does indeed achieve what it claims by supporting endothelial health, whether through senescence inhibition or endothelium reinforcement or all the magical stuff it claims to do. Even then it doesn't tackle the root cause of the problem.

I believe that a lot of us have multiple mechanisms leading to our disease state and even when finding a holy grail supplement that addresses one of these malfunctioning mechanism, the other will still be there.

I'm using myself as an example so I may be biased, I have a mutation affecting smooth muscle function, ehlers danlos(collagen structural issue), neuropathy, sleep apnea, and empty nose syndrome. These all aggregate to cause severe dysfunction in energy production, oxygen exchange, oxygen delivery, blood flow regulation, etcccc.......!

This is just an example to point out that a lot of us have multiple mechanisms compiling to cause sever illness that ends up looking like severe Me/csf and no supplement will fix that.

 

[sunshine44]

While the endothelium does play a significant role in the dysfunction of blood vessels and oxygen delivery to tissues, I believe that the root cause of these issues extends beyond the endothelium. For many of us, there is a fundamental functional and/or structural problems within our blood vessels, whether they be due to issues in the endothelial layer, smooth muscle layer, connective tissue layer, or nerves. These issues cannot be effectively resolved by simply supplementing with even the most promising substances, even if they have been proven in numerous studies to fulfill their claims. When the foundational problem persists, applying a band-aid approach will not address the underlying cause. Let's assume that a particular supplement does indeed achieve what it claims by supporting endothelial health, whether through senescence inhibition or endothelium reinforcement or all the magical stuff it claims to do. Even then it doesn't tackle the root cause of the problem.

I believe that a lot of us have multiple mechanisms leading to our disease state and even when finding a holy grail supplement that addresses one of these malfunctioning mechanism, the other will still be there.

I'm using myself as an example so I may be biased, I have a mutation affecting smooth muscle function, ehlers danlos(collagen structural issue), neuropathy, sleep apnea, and empty nose syndrome. These all aggregate to cause severe dysfunction in energy production, oxygen exchange, oxygen delivery, blood flow regulation, etcccc.......!

This is just an example to point out that a lot of us have multiple mechanisms compiling to cause sever illness that ends up looking like severe Me/csf and no supplement will fix that.

Certainly makes sense and I understand. I seem to have pretty severe endothelial issues after cdc Lyme positive in 2017. I’m still severe and bedridden but the only relief I’ve gotten with these issues is through certain supplements. Scutellaria baicelensis being one of them.

I think (for myself) it’s important to research all avenues of these cluster illnesses since there are currently so few specialists or solutions in medicine, per my experience.

In addition I have terrible mast cell activation disease and have had reactions to most medications tried on me pertaining to these things. I’m addition, I developed reactions to most antihistamines etc. in essence, someone like me had to get very creative and look at all the avenues. And thank goodness I did. Another reason I am very slowly (past 2 years) introducing some supplements to lower cytokines…. Some of these I found through buhners book above.

Would love to hear what all you guys are using to help your endothelial systems.

 

[Hoosierfans]

@eddyrms97 I totally agree with you. One or two supplements aren’t going to fix us. I have tubs and tubs full of old supplements tried, and discarded over the years.

But strategies for healing the endothelial layers can help with some symptoms — even if we are “downstream” from the root cause. For me, I’m planning on targeting endothelial healing WHILE trying to get at the root cause (in my case smouldering and reactivating viruses). Treating root causes can take years of work alone, so supporting endothelial healing alongside that work seems to me to be a good strategy.

Of course, there’s always the possibility that if you aren’t addressing the root cause, you are just trying to throw water on a fire at the same time someone else is throwing gasoline on it.

 

[linusbert]

its complicated and easy at the same time.
almost everything which helps heal our regenerate also improves endothel function.

but also reducing things which damage your endothel will help, e.g.
- too much homocysteine (which damages the endothel) => vitamin b6, b12, folate and cholin fix this (i'd prefer egg yolks or phosphatidylcholin in supplements like bodybio pc)
- too much blood sugar, too much insulin => less carbs, more keto, thiamin, magnesium, potassium might help
- too much bad cholesterine, too much ldl, too less hdl => phosphatidylcholin will fix this (eat many egg yolks a day!)
- general oxidative stress => antioxidants like vitamin C and many more
- regeneration of endothelial cells => vitamin C, copper, proteins, cholin, collagen?, vitamin D
- improving functioning of endothel => vitamin D
- surely helpful => pycnogenol / probably any OPC
- maybe helpful => i think carnitine might be, cant remember why, probably resveratrol


btw, if you fear the cholesterin in egg yolks, it might not be as bad as you think:
https://www.unisci.com/stories/20014/1029013.htm
usually cholin help transport the fats, so while eggs have much cholesterol, they have also much which keeps it in check. so basically even if eggs have much cholesterin they do not affect blood cholesterol much.

"but TMAO and cholin":
https://pubmed.ncbi.nlm.nih.gov/33872583/
there are many study's which have shown that eggs to 2-4 a day do not raise TMAO.
the suspicion is to cholin supplements to raise TMAO. so natural food once again seams just fine.

 

[GreenEdge]

Healthy blood vessels have an inner lining of hair like projections that form a thick protective layer called the glycocalyx. The glycocalyx (a fairly recent discovery) forms a physical barrier between red blood cells and the endothelium.

The glycocalyx is very easily destroyed by oxidation so if a blood vessel is removed to study under a microscope, the glycocalyx is already gone.

Do your own research...
Glycocalyx Structure and Function Explained (short video)
The Science and Physiology of the Glycocalyx by Dr. Hans Vink (long video)
Glycocalyx Impairment in Vascular Disease: Focus on Inflammation (PubMed)

If you ever needed evidence that consuming carbohydrates is bad for you, read on.

The glycocalyx is easily damaged by elevated blood glucose and when sufficiently damaged it is shredded in order to grow a new one which takes 5-7 days to fully regrow. Before the advent of agriculture 12,000 years ago, carbohydrate consumption was rare and only seasonal so this evolutionary approach maintained good health. Today, it never gets a chance to regrow.

Without it, red blood cells come in contact with the endothelium causing abrasion and scaring leading to atherosclerosis. Cholesterol is only involved in the repair process. Blaming cholesterol for atherosclerosis & heart disease, is like arriving at a building on fire and blaming the firefighters for causing the fire.

All carbohydrates are broken down into glucose. Carbohydrates are not essential. Our bodies can produce all the glucose it needs. Don't eat plants, don't drink calories and let your body maintain a healthy natural low level of blood glucose by eating an animal based ketogenic diet. Fatty meat provides all nutrients we need in the most bio-available form. Ruminant meat (beef, lamb, etc) is the cleanest.

I know it sounds more difficult than it really is, but do it for 45 days and you will be over your food addictions and you will feel much better.

Do your own research...
Mental Health & MS Reversed on Carnivore- Emily Penton (90mins)

So the million dollar question — how to we heal our endothelial layers. Anyone have any strategies?

Yes:
1. A ketogenic lifestyle (eg. carnivore diet) to keep blood glucose low.
2. The supplements: N-acetyl cysteine (NAC) + Trimethylglycine (TMG) + Hyaluronic acid.

To reduce inflammation take: N-acetyl cysteine (NAC) + glycine, they're the precursors our bodies need to make the powerful anti-oxidant glutathione. I suggest getting glycine from the supplement Trimethylglycine (TMG) instead of glycine powder. A byproduct of converting NAC to glutathione is hydrogen sulfide, that + Hyaluronic acid will help rebuild the glycocalyx.

BTW. Resveratrol does nothing. David Sinclair's lab made a mistake which made it look effective when it's not.

 

[Garz]

i think it depends on what is causing the damage to the endothelial cells and the associated inflammation

Greenedge's perspective on high carbohydrate diets which are contrary to the human evolutionary template having become normalised in the west, is valid as a general observation of todays culture - especially in the western world where a very large proportion of the population is suffering from obesity, type 2 diabetes, metabolic syndrome, non alcoholic fatty liver disease and other conditions that are undeniably associated with high carbohydrate intake.

however in the OP's case there is a history of vector born infection.

this is an even more apparent and direct source of damage to the blood vessels.
all three of the main vector born infections in the western world, Borrelia, Babesia, and Bartonella cause chronic inflammation in the microvasculature of its hosts.

further - by damaging and opening up cells in the endothelium to the host immune system - its is common for these infections to cause auto-immune antibodies to form - again relevant to the OP.

intracellular infections, such as bartonella, which drive the host immune cells to consume infected host cells containing these bacteria are particularly prone to causing auto-immunity - as in doing so large quantities of the internal contents of host cells, ( proteins, membrane components, dna etc ) are consumed by host macrophages and especially while the immune system is activated and dysregulated by the infections - this increases the risk of auto-antibodies forming.

bartonella is also emerging as one of the co-infections most associated with antibiotic treatment failure in Lyme disease patients - see latest papers by Horowitz for studies

i myself took 9 months of a triple antibiotics combination for lyme and bartonella - and still had bartonella clearly visible in my blood afterwards - it can be a very tough infection to shift.

symptoms can be a perfect match to CFS/ME - my symptoms matched the most prevalent symptoms in the symptoms surveys here on Phoenix Rising perfectly - including pronounced PEM.

i was also originally diagnosed as having either CFS UK NHS doctors - who know basically nothing about chronic vector born infections.

Bartonella is an emerging disease. only gradually coming to light as something that could cause illness humans in the 1980's after it was found in AID's patients - and then only much later that it could cause chronic illness in otherwise healthy humans. Primary care doctors like GP's and A&E staff are then typically 30years behind the forefront of this research - which is to say, in the case of bartonella, entirely ignorant.

Today there are 45 known species - most of them zoonotic and around half of these are now confirmed to cause human illness. Bartonella have been found in every mammal on the planet so far tested including, whales and dolphins, but is more commonly associated with rodents, cats and dogs - and farm animals.

in case you are thinking this is a rare disease - exposure is commonplace - around 50% of domestic cats that are allowed outdoors are infected

i also took large quantities of Japanese knotweed prior and during antibiotics - and while its usefulness as an anti-inflammatory and endothelium protecting herb is documented by many many different researchers - and i would say that it might take the edge of some inflammatory symptoms - but while and active infection that directly infects the endothelial cells - such as bartonella - is in effect - it will be unlikely to brink major improvements
this is slides of my blood compared to that of a known bartonella infected patients ( after 9m of antibiotics )
the clear vacuoles are the spaces that bartonella create around themselves inside the red cells - as is documented in teh literature.
this presentation is unique and definitive - no other infection, condition or artefact has this presentation

i also take NAC and many other supplements - and i do think mitigating inflammation and oxidation is helpful in managing this disease while treating it - but again - while infection is present - these will have only minor mitigating properties.

after many years being stuck in the wilderness - i am now 60% recovered by focussing on treating bartonella.
the organism is intracellular, biofilm forming and persister cell forming - so its is not a quick fix treatment
its more akin to something like tuberculosis - where treatment is many months to years of combination antibiotics.

there seems to be a general reluctance in the ME/CFS community to accept that their condition could be caused by a bacterial infection - which is unsurprising as this has been denied as a possibility by medical doctors for decades.

but i am proof that such infections can and do have precisely the symptoms of ME/CFS.
and in fact most sufferers are diagnosed with CFS prior to getting a proper diagnosis.

i very much doubt i am the only one - so i post here to help raise awareness about this dreadful disease and its similarity to CFS - and provide others hope of recovery.

if anyone wishes to lean more- please see my other posts -and or watch the video below - which is i think the best primer on bartonella available - its by world renowned researcher Ed Breischwerdt at North Carolina state university

symptoms checklist by invisible international- a highly professional education and advocacy organisation here

 

[sunshine44]

i think it depends on what is causing the damage to the endothelial cells and the associated inflammation

Greenedge's perspective on high carbohydrate diets which are contrary to the human evolutionary template having become normalised in the west, is valid as a general observation of todays culture - especially in the western world where a very large proportion of the population is suffering from obesity, type 2 diabetes, metabolic syndrome, non alcoholic fatty liver disease and other conditions that are undeniably associated with high carbohydrate intake.

however in the OP's case there is a history of vector born infection.

this is an even more apparent and direct source of damage to the blood vessels.
all three of the main vector born infections in the western world, Borrelia, Babesia, and Bartonella cause chronic inflammation in the microvasculature of its hosts.

further - by damaging and opening up cells in the endothelium to the host immune system - its is common for these infections to cause auto-immune antibodies to form - again relevant to the OP.

intracellular infections, such as bartonella, which drive the host immune cells to consume infected host cells containing these bacteria are particularly prone to causing auto-immunity - as in doing so large quantities of the internal contents of host cells, ( proteins, membrane components, dna etc ) are consumed by host macrophages and especially while the immune system is activated and dysregulated by the infections - this increases the risk of auto-antibodies forming.

bartonella is also emerging as one of the co-infections most associated with antibiotic treatment failure in Lyme disease patients - see latest papers by Horowitz for studies

i myself took 9 months of a triple antibiotics combination for lyme and bartonella - and still had bartonella clearly visible in my blood afterwards - it can be a very tough infection to shift.

symptoms can be a perfect match to CFS/ME - my symptoms matched the most prevalent symptoms in the symptoms surveys here on Phoenix Rising perfectly - including pronounced PEM.

i was also originally diagnosed as having either CFS UK NHS doctors - who know basically nothing about chronic vector born infections.

Bartonella is an emerging disease. only gradually coming to light as something that could cause illness humans in the 1980's after it was found in AID's patients - and then only much later that it could cause chronic illness in otherwise healthy humans. Primary care doctors like GP's and A&E staff are then typically 30years behind the forefront of this research - which is to say, in the case of bartonella, entirely ignorant.

Today there are 45 known species - most of them zoonotic and around half of these are now confirmed to cause human illness. Bartonella have been found in every mammal on the planet so far tested including, whales and dolphins, but is more commonly associated with rodents, cats and dogs - and farm animals.

in case you are thinking this is a rare disease - exposure is commonplace - around 50% of domestic cats that are allowed outdoors are infected

i also took large quantities of Japanese knotweed prior and during antibiotics - and while its usefulness as an anti-inflammatory and endothelium protecting herb is documented by many many different researchers - and i would say that it might take the edge of some inflammatory symptoms - but while and active infection that directly infects the endothelial cells - such as bartonella - is in effect - it will be unlikely to brink major improvements
this is slides of my blood compared to that of a known bartonella infected patients ( after 9m of antibiotics )
the clear vacuoles are the spaces that bartonella create around themselves inside the red cells - as is documented in teh literature.
this presentation is unique and definitive - no other infection, condition or artefact has this presentation
View attachment 52727
i also take NAC and many other supplements - and i do think mitigating inflammation and oxidation is helpful in managing this disease while treating it - but again - while infection is present - these will have only minor mitigating properties.

after many years being stuck in the wilderness - i am now 60% recovered by focussing on treating bartonella.
the organism is intracellular, biofilm forming and persister cell forming - so its is not a quick fix treatment
its more akin to something like tuberculosis - where treatment is many months to years of combination antibiotics.

there seems to be a general reluctance in the ME/CFS community to accept that their condition could be caused by a bacterial infection - which is unsurprising as this has been denied as a possibility by medical doctors for decades.

but i am proof that such infections can and do have precisely the symptoms of ME/CFS.
and in fact most sufferers are diagnosed with CFS prior to getting a proper diagnosis.

i very much doubt i am the only one - so i post here to help raise awareness about this dreadful disease and its similarity to CFS - and provide others hope of recovery.

if anyone wishes to lean more- please see my other posts -and or watch the video below - which is i think the best primer on bartonella available - its by world renowned researcher Ed Breischwerdt at North Carolina state university

symptoms checklist by invisible international- a highly professional education and advocacy organisation here

Very much so. I often tell people it feels like I’m battling a form of tuberculosis. A persistent and devastating infection.
i am severe and bedridden 5 years (bathed from a bed) because of Lyme and co infections. What do you feel your top reasons are for 60% recovery?

I completely agree about ME/CfS. There is a huge denial of the role latent and hidden infections play in our community. I don’t think most yet realize just because a blood test comes back negative for an infection, it doesn’t mean some of these infections are not hanging out in cell walls, organs, etc. and doctors are still quite aloof to this reality, for reasons most of us realize .

 

[Garz]

sure - but its not one thing

1st - i took complete control and accountability for my health - as no doctors in the UK seem competent or willing to do so - so i made an unwavering commitment to figure it out for myself and to do whatever it takes to get my health back (I may yet fail - but i have committed that if i do, it will not be for lack of effort ).

2nd - i became very systematic and started overhauling every aspect of my life that could help my health move forward - this was before i had a clear diagnosis - so initially things that help regardless of the cause of my health issues.
-working on improving my sleep was key
-changing my diet to ketogenic helped move me forward significantly
-exercise - starting with gentle walking and very gradually working my way up
-stress management to help my overall function

i kept detailed systematic records and produced charts so i could detect even small changes in symptoms, trends over time, small reactions to treatments good or bad etc. so, while working on my own i could reliably tell what worked and what did not(based on objective data points rather than just subjective feelings - which i have found to be next to useless for guiding treatment decisions when progress is slow and symptoms are up and down from day to day and week to week)
this moved me forward from housebound to around 30% recovered

3rd - started targeting lyme with Buhner herbs (basically everything in his second edition Healing Lyme book) this help a little and got me to maybe 40%

4th - added herbs and fibrinolytic agents oil of oregano ( there are studies showing its highly active for bartonella ) and then methylene blue for bartonella ( while keeping all of the above) - this got me to 50+ % ( bartonella was still visible in my blood at this stage - this is where the above slides were taken - so you can see how resilient it is)

5th - i am now adding pulsed combination antibiotics for bartonella and lyme - on top of the above and finding a small step forward with each pulse - i am probably better than 60% now.

i have not bounced from one approach to another as many do - herbs, then stop those and try abx - then stop those and try rife or magnets, or IV ozone or some other thing

i have built a systematic approach by finding things that help, eve if only a little bit - keeping those and adding to it

people often think in terms of there being a single special antibiotic that will cure them in a few weeks or months - or a herb - or some other treatment - but for many that is wishful thinking - it takes long sustained coordinated effort from multiple directions.

i know you are ware already - but for anyone reading who still doubts these diseases could be behind their CFS - this a recent study of severely debilitated lyme and coinfection patients - many of whom had bartonella or anaplasma also - many were paralysed or bed bound - average treatment duration was 20months of combination antibiotics - but they all recovered
paper here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10294829/
Note - one of the authors was John Lambert - recognised Infectious disease expert and well known Irish LLMD - and member of Invisible Internationals board

 

[sunshine44]

sure - but its not one thing

1st - i took complete control and accountability for my health - as no doctors in the UK seem competent or willing to do so - so i made an unwavering commitment to figure it out for myself and to do whatever it takes to get my health back (I may yet fail - but i have committed that if i do, it will not be for lack of effort ).

2nd - i became very systematic and started overhauling every aspect of my life that could help my health move forward - this was before i had a clear diagnosis - so initially things that help regardless of the cause of my health issues.
-working on improving my sleep was key
-changing my diet to ketogenic helped move me forward significantly
-exercise - starting with gentle walking and very gradually working my way up
-stress management to help my overall function

i kept detailed systematic records and produced charts so i could detect even small changes in symptoms, trends over time, small reactions to treatments good or bad etc. so, while working on my own i could reliably tell what worked and what did not(based on objective data points rather than just subjective feelings - which i have found to be next to useless for guiding treatment decisions when progress is slow and symptoms are up and down from day to day and week to week)
this moved me forward from housebound to around 30% recovered

3rd - started targeting lyme with Buhner herbs (basically everything in his second edition Healing Lyme book) this help a little and got me to maybe 40%

4th - added herbs and fibrinolytic agents oil of oregano ( there are studies showing its highly active for bartonella ) and then methylene blue for bartonella ( while keeping all of the above) - this got me to 50+ % ( bartonella was still visible in my blood at this stage - this is where the above slides were taken - so you can see how resilient it is)

5th - i am now adding pulsed combination antibiotics for bartonella and lyme - on top of the above and finding a small step forward with each pulse - i am probably better than 60% now.

i have to bounced from one approach to another as many do - herbs, then stop those and try abx - then stop those and try rife or magnets, or IV ozone or some other thing

i have built a systematic approach by finding things that help, eve if only a little bit - keeping those and adding to it

people often think in terms of there being a single special antibiotic that will cure them in a few weeks or months - or a herb - or some other treatment - but for many that is wishful thinking - it takes long sustained coordinated effort from multiple directions.

i know you are ware already - but for anyone reading who still doubts these diseases could be behind their CFS - this a recent study of severely debilitated lyme and coinfection patients - many of whom had bartonella or anaplasma also - many were paralysed or bed bound - average treatment duration was 20months of combination antibiotics - but they all recovered
paper here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10294829/
Note - one of the authors was John Lambert - recognised Infectious disease expert and well known Irish LLMD - and member of Invisible Internationals board

Thank you, this was helpful information. It’s certainly imperative we take our health into our own hands in situations as some of ours. I do think it’s one of the reasons I am still alive. Be well and thanks again for sharing.

 

[Garz]

good luck with your own journey

if you need more input - the best support forum i have found is the link below
they are a helpful knowledgeable bunch - many struggling with Lyme, bartonella and Babesia
https://www.healingwell.com/community/default.aspx?f=30

i am active there also

 

[linusbert]

i like the carnivore / keto and low carb approach but i dont think carbohydrates and in the end glucose are the problem. the body is really good in processing glucose. (i say glucose and not sugar intentionally).

people in the world have been eating carbs for hundreds and thousands of years, the healthy mediteran diet has it as well. these modern western diseases came only the last few decades. the problem arent carbs per se... its processed carbs and sugar additives and AGEs and transfats.
so the byproducts of processed synthetic arteficial food (thats what i call the food products coming out of those factories) is what makes people sick.
all these modern bread and carbs are basically full of sugar (not glucose, sugar as in 1 glucose + 1 fructose molecule or even worse, just 100% plain fructose of HCFS). so you get 50%+ fructose for ever gram of sugar into your body and this is the actual culprit with "carbs".
fructose is a metabolism killer, it blocks the liver, its inflammatory, the human body never adapted to high fructose intake.

so eating a real burger, with good real fresh beef meat and real good bread with pieces of salat is actually healthy. but the crap in fast food stores like mcdonalds is not a real burger.

its really all about processed and not/least processed foods.
carnivore, keto, vegan etc. does not really play a role... and fights between those camps are just distracting from the real problem.

btw, there is a thing called "dirty keto" , its when people do keto with bad low quality low nutritional processed foods and fats.

 

[Hoosierfans]

Agree with you @linusbert. I did carnivore for 4 months earlier this year and it was one of the worst things I did. That said, I know lots of people, Emily Penton (who was my coach) who got their lives back with carnivore and thrive on it. For me, it just made my mast cell issues and food intolerances worse. It’s hard to know who it will work for and who it won’t.

@Garz thank you for sharing your story and accomplishments toward health!! I agree a lot of this is hidden infections wreaking havoc. For me, it’s probably EBV and HSV-1. And you are correct, it’s not one ABX…or one Antiviral…or one supplement that is going to get one toward health. It’s a multi faceted approach that we have to take control of as best we can.

I’m fortunate to have an amazing PCP on my side, and we literally just put together a 15 page document of all the tests I’ve had, the treatments I’ve tried, the treatments I haven’t (but research supports) so that we can come up with a multi prong approach to getting me back and out of bed and pain. 😃

 

[Garz]

@Hoosierfans - just a heads up in case it helps you - a number of people in the Lyme community i am in have had very high titres of EBV and other common viruses and have assumed they must be suffering with viral reactivation. this is understandable as symptoms also often seem to match.

but it is well documented in the scientific literature that antibodies to viruses in the herpes family cross react with those produced in response to borrelia (the bacteria that causes Lyme disease).

when these people have had PCR tests for EBV or HSV1 or whatever the virus was that was flagged as having high antibody titres - they were negative. this is very unlikely to be the case if they truly had that virus replicating at a high enough rate to cause all their symptoms and keep them bed bound.
these people typically had lyme disease all along - but got side tracked by the viral diagnosis

one other thing to pass along - there is sometimes another clue or oddity in these cases - in that in viruses like EBV where we have multiple antibodies to test for - and the pattern or combinations of antibodies tested for are expected to tell us is its acute or past infection etc - when its a false positive caused by another infection like lyme - these patterns can be off - ie we can have a super high titre of one - but nothing on another that normally accompanies it. this is a red flag that something other than a simple viral infection is going on.

in essence what seems to be going on is that chronic bacterial infections can over time cause our bodes to spit out lots of unexpected antibodies, in its efforts to fight the intracellular infection, and this can cause odd serologic results - which are not a reliable 1-1 representation of what infections we actually have.

many doctors seem to struggle with this -as we all want a simple black and white test - ultimately as a test technology serology is just a very poor match for chronic infection