How to heal your endothelium….

[Hoosierfans]

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

Garz, thanks I appreciate that. Lyme and co is something everyone should look into. I spent 7 years treating Lyme and coinfections (2013-2020) and did so with some of the best (Dr Mozayeni of Galaxy was my doc) and unfortunately I just got worse and worse from all the ABX and other meds thrown at me. In 2020, I tested w Armin for Lyme and all the coninfections and my titers were 0. ISpot was also all negative. So either I beat it back, or I never had it in the first place. (And my symptoms didn’t match Lyme or other coinfections either — possibly Bartonella but we ruled that out w sophisticated testing).

I think everyone should look closely at Lyme and coinfections, parasites, mold etc but also don’t be afraid to conclude that isn’t your issue. For me, with my presentation, test results and symptomatology, we are pretty sure it’s a herpes virus and / or Coxsackie problem.

Also, viruses don’t need to “be replicating at such a high level” to keep people bedbound. All of the most recent research in long COVID and ME / CFS (see Prusty’s work) indicates that the original virus may be dormant / not replicating, but the immune system is going after it and all the cellular nonsense the latent viruses are leaving around and THAT is what is causing such severe symptoms.

Another example is what they are finding in MS. EBV is the “trigger” for MS, but people develop MS slowly years after having an EBV infection. In the ensuing time, the immune system has attacked myelin proteins because they are molecular mimics of EBV…the immune system, in an attempt to keep the EBV at bay, attacks cells that look like EBV but aren’t. So the virus IS the problem, but it’s not the whole story.

 

[aquariusgirl]

hi, hoosierfans, who are you working with to treat coxsackie?

 

[Garz]

Garz, thanks I appreciate that. Lyme and co is something everyone should look into. I spent 7 years treating Lyme and coinfections (2013-2020) and did so with some of the best (Dr Mozayeni of Galaxy was my doc) and unfortunately I just got worse and worse from all the ABX and other meds thrown at me. In 2020, I tested w Armin for Lyme and all the coninfections and my titers were 0. ISpot was also all negative. So either I beat it back, or I never had it in the first place. (And my symptoms didn’t match Lyme or other coinfections either — possibly Bartonella but we ruled that out w sophisticated testing).

I think everyone should look closely at Lyme and coinfections, parasites, mold etc but also don’t be afraid to conclude that isn’t your issue. For me, with my presentation, test results and symptomatology, we are pretty sure it’s a herpes virus and / or Coxsackie problem.

Also, viruses don’t need to “be replicating at such a high level” to keep people bedbound. All of the most recent research in long COVID and ME / CFS (see Prusty’s work) indicates that the original virus may be dormant / not replicating, but the immune system is going after it and all the cellular nonsense the latent viruses are leaving around and THAT is what is causing such severe symptoms.

Another example is what they are finding in MS. EBV is the “trigger” for MS, but people develop MS slowly years after having an EBV infection. In the ensuing time, the immune system has attacked myelin proteins because they are molecular mimics of EBV…the immune system, in an attempt to keep the EBV at bay, attacks cells that look like EBV but aren’t. So the virus IS the problem, but it’s not the whole story.

thanks for the reply and glad you have looked into it

my Armin tests were also negative for bartonella via serology and I-spots - before those slides were done
so even the best labs are not able to detect these pathogens reliably
but if you have been through the Mozeyani route i agree you have done a great deal to try to bottom out that direction.

ref the EBV and MS connection based on the 20m USA military records - the work is groundbreakingly but incomplete - if certainly shows an association between the two - and goes some way towards demonstrating a causal link - but falls short of proving its the ONLY cause involved.

for instance - it doesn't answer why 99% of those with EBV in their bodies ( most of us) do not get MS. there are clearly other factors at work and the aetiology could well be multifactorial - as apposed to the single-bug-single-disease model that arrived with Pasture - and the medical community have been clinging to ever since.

as an example - borrelia burgdorferi DNA and other borrelia proteins have also been found in the brains of MS patients in multiple studies along with other microbes. so it could be that EBV is just one factor required for the immune reactions required that lead to MS.

the part the immune system plays in these complex chronic diseases is so far under researched and under appreciated. i believe future research will demonstrate that all chronic infections give rise to elevated levels of all sorts of self directed antibodies with unpredictable results. some of which settle down after the initial trigger is removed and others that seem much more reluctant to.
we only have names for around 100 auto-immune diseases based on antibodies to specific human proteins - but there are thousands of such proteins - and no reason we cannot develop antibodies to any of them - so the scope is much wider than the named diseases.

in your place i think i would also be working in this direction - i wish you every success in your journey

 

[linusbert]

just came up in my youtube suggestions,
this girl was really sick, tried all diets, and stuck with only meat which healed hear almost completely.

 

[Garz]

yep, cases like that do exist - especially where the immune system is implicated in the cause or maintenance of the illness

following on from my points about the role of the immune systems role being underestimated in many of these poorly understood diseases

i do not believe its some intrinsic property of the meat in these diets that is somehow nourishing these people back to health ( although we are as a society over nourished in calories and under nourished in micronutrients - and easting mostly ultra processed food - so there could be an element of that going on also). or that "plant toxins" are slowly killing all of us.

but rather - we know 70% of the immune system is located in and is concerned with managing the gut and its contents. And since these are immune mediated diseases - something about these diets is helping address some immune dysfunction.

what could be causing this ?

to help answer that question we have to get away from fads and names for some of these diets and the stories many proponents tell about them - and look to see what they have in common.
Keto, Carnivore and GAPS diets, which are those most associated with these miracle cures, are all primarily low carb and or low fibre diets.

what is the significand of this?
well carbs and fibre are the primary elements which drive both the number of different microbes in the gut and the absolute quantities of bacteria.

this is significant because the immune system of the host has to manage and deal with the by products of all of these bacteria. this something it does with relative ease in healthy people - although it does take quite a lot of energy for the host to do this.

but in those with dysregulated immune systems - who are ill and suffering with energy deficits - this is a major burden.
in this condition the gut membrane is likely hyper permeable, bacterial by products and food by products are entering the host blood stream and adding to the load on the immune system - and this in turn helps keep it dysregulated and sapping further immune resources and energy from the host.

in my own case i also found all interventions that fed gut bacteria( prebiotics), added more gut bacteria (probiotics), killed gut bacteria ( antibiotics / antimicrobials, even if they did not leave the gut) all resulted in flaring of symptoms. this fits well with the above scenario as each of these interventions creates more bacterial by products for the immune system to deal with.

i believe the GAPS, Carnivore, and to some extent Keto diets are therefore producing these remarkable turnarounds by reducing gut bacteria and by products, taking a major load off the immune system - allowing it to better regulate itself - resolve longstanding dysregulation - reset autoimmunity ( diagnosed and specifically named or otherwise) - and serve as a significant element in returning the host back to health.

my own CFS is now known to be caused by a chronic infection - one which also damages the gut lining adding to the above cycle.
despite this separate root cause for my illness, i have had immediate significant improvement from adopting a Ketogenic diet and can track the start of my recovery from this point in time.
in my case this had to be a low fibre style of keto diet for best effects - so i had to limit nuts seeds and certain vegetables.

my partner with the same infection went from near housebound to running 2 miles 3 times a week after just 2 weeks on a v strict ketogenic diet ( i was utterly resistant to the idea until i saw this with my own eyes!). she went back to work part time after 6 months and full time in 12 months.

so each diet trend has a kind of mythology or story around it that people tell each other are the reasons for its perceived benefits - humans are after all "story engines" who have strong urges to tell stories to explain what they see - but by looking across many of them we can see that these do not necessarily reflect all that is actually going on - there could be other explanations outside of the mythology that fit better with what we see.

 

[linusbert]

my partner with the same infection went from near housebound to running 2 miles 3 times a week after just 2 weeks on a v strict ketogenic diet ( i was utterly resistant to the idea until i saw this with my own eyes!). she went back to work part time after 6 months and full time in 12 months.

she went running 3 times a week after just 2 weeks, but she started working part time only after 6 months? what is she working? something physical demanding?

 

[Garz]

she went running 3 times a week after just 2 weeks, but she started working part time only after 6 months? what is she working? something physical demanding?

yep, i know it may sound backwards to some - but the way these chronic illnesses work is not linear - she made herself run - but would still be tired for the rest of the day initially - gradually over the following months she was able to do more. it also takes time to get a job of any sort when you have been out of teh workplace for 5 years through illness

 

[linusbert]

probably she could also have worked after 2 weeks as well, can't imagine people can run miles but dont do a office job. i am talking about physical capabilities, not about job/social situation. getting back into life after being out of it for so long is a whole different story.
i also hope to one day find this magic switch which will start insane remission.
though i am also thinking about how would it feel.. i could imagine beeing anxious always in fear that i could do overexercise and crash again.. i would probably be psychological damaged for a long time. oooh boy, i really hope i will have this problem one day.

 

[Bobbi007]

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.

How do I find out if I have Ehlers Danlos? A 23 and me showed something with that.

 

[GreenEdge]

Studies show: How to Restore, Regenerate, and Protect the Endothelial Glycocalyx
I do not endorse their product Endocalyx, the key ingredient is glucosamine sulphate.

Glucosamine sulphate:
There are no major food sources of glucosamine. Most glucosamine supplements are made from chitin, the hard outer shells of shrimp, lobsters, and crabs. Cartilage is 5% glucosamine, but I don't eat cartilage so I will be adding the supplement N-acetyl glucosamine (NAG).

Sulphate: Cysteine contains sulfur, eggs are a good natural source. N-acetyl cysteine (NAC) contains cysteine. Are we getting enough sulfur in our diet? - PubMed

BTW. This study showed that niacin (B3) inhibits vascular inflammation and protects against endothelial dysfunction independent of changes in plasma lipid levels.

 

[Rufous McKinney]

this girl was really sick,

also her famous Dad can ONLY eat steak.

 

[Hoosierfans]

also her famous Dad can ONLY eat steak.

The Petersens are super famous in the carnivore space. And again, they both cured a LOT of their health issues (autoimmune, depression etc) by going carnivore. And trying it myself and belonging to groups for it, there are a lot of people that DO benefit from it. For me it was a total bust and made me worse and who knows why. All one can do is educate themselves on the possibilities out there and decide what might be worth the risk / benefit.

 

[linusbert]

also her famous Dad can ONLY eat steak.

he eats greens too. he is basically beef-vegan.

 

[Hoosierfans]

Here’s a super interesting article. It’s focused on how COVID causes endothelial damage but I’m sure we can extend its findings, somwhat, to other viruses:

https://www.nature.com/articles/s41401-022-00998-0

My immunologist, PCP and I have formulated a plan of attack to repair my endothelium / vascular system and I’ll keep this thread updated. A lot of it is based on what they are trying in COVID…and though mine is post mono, my markers look similar to COVID. For reference:

1. High SCD40L (36,000), VEG-F (52.8), IL-6 (4.0). Other general inflammatory markers are high (IL-10, CCl5, TNF-a, IFN gamma, MMP-9 and TGF- Beta 1)

2. Anti ETAR1 antibodies (anything over 10 is high, mine is 54.1)

3. Clear MRI, but nonspecific white matter lesions on FMRI and hypometabolism on 2 PET scans — “nonspecific but could be pathogenic” and one explanation is vasculitis. Abnormal trans cranial dopplar study.

4. Symptoms: lightheaded, dizzy 24/7, sunburn like pain all over body, cognitive decline, memory loss, fatigue, severe anxiety and depression, sensory sensitivities

** note: it seems that the two “causes” for the burning pain that I have is either mast cell activation syndrome or vasculitis. I DO have a high tryptase so carry a mast cell diagnosis, but have tried every over the counter and prescription mast cell stabilizer there is over the last 5-6 years (all the way up to Xolair shots). So given my clinical picture and labs, we are moving on to the endothelial dysfunction cause**

Treatment will start w Famvir (to knock down EBV), low dose statin and low dose Plavix. Supplements will be Lactoferrin (to help heal and seal the gut and kill viruses rhere) and high dose Vitamin D (thanks to all here for that suggestion).

Depending on how I react, other possibilities may include:

— Tenofovir (for anti viral effect)
— Maraviroc (for CCL5 / RANTES blocking)
— Plasmapheresis (to remove antibodies)
— beta blocker (for POTS and to help endothelial healing
— Pycegnol — heals endothelial linings.
—Ibudilast — non selective PDE4 inhibitor (suppresses NOS, blocks TLR4 (thus NFK-beta and TNF-a, IL-6 and CALM LPS stimulated microglia)

 

[GreenEdge]

Understanding the Mitochondrial Link to Disease
Poor micro-vascular blood flow impairs delivery of oxygen and nutrients to mitochondria.

 

[GreenEdge]

For me it was a total bust and made me worse and who knows why.

Did you get past the keto flu stage?

he eats greens too. he is basically beef-vegan.

No he doesn't. He eats only meat.

 

[Garz]

1. High SCD40L (36,000), VEG-F (52.8), IL-6 (4.0). Other general inflammatory markers are high (IL-10, CCl5, TNF-a, IFN gamma, MMP-9 and TGF- Beta 1)

2. Anti ETAR1 antibodies (anything over 10 is high, mine is 54.1)

3. Clear MRI, but nonspecific white matter lesions on FMRI and hypometabolism on 2 PET scans — “nonspecific but could be pathogenic” and one explanation is vasculitis. Abnormal trans cranial dopplar study.

4. Symptoms: lightheaded, dizzy 24/7, sunburn like pain all over body, cognitive decline, memory loss, fatigue, severe anxiety and depression, sensory sensitivities

** note: it seems that the two “causes” for the burning pain that I have is either mast cell activation syndrome or vasculitis. I DO have a high tryptase so carry a mast cell diagnosis, but have tried every over the counter and prescription mast cell stabilizer there is over the last 5-6 years (all the way up to Xolair shots). So given my clinical picture and labs, we are moving on to the endothelial dysfunction cause**

Treatment will start w Famvir (to knock down EBV), low dose statin and low dose Plavix. Supplements will be Lactoferrin (to help heal and seal the gut and kill viruses rhere) and high dose Vitamin D (thanks to all here for that suggestion).

hi Hoosierfans

i know you have tried treating lyme etc and have had negative titres since
but you also said your symptoms were not like lyme or bartonella - and yet the ones you describe above are in fact very typical Lyme.

sunburn pain all over = neuropathy = classic late stage lyme symptom - as are memory issues, anxiety and depression, light and sound and touch sensitivities, dizzyness etc

the high SCD40L and other inflammatory markers, like VEG-F are also a very good match ( i believe Dr Bruce Patterson published recently on SCD40L in chronic lyme patients )

the hypo perfusion and non specific white matter lesions are also very typical of lyme patients scans

auto-antibodies - esp related to inflammation in the vascular system are very common in lyme and associated infections. i have some myself.

i know you have had negative titres since attempting treatment - but there are unfortunately no tests available that can prove an infection with lyme or these other intracellular infections is eradicated
and my elispots and antibody tests were negative at Armin - but bartonella can clearly bee seen in my blood smears - so its simply the case that current testing cannot adequately detect these infections

you mention EBV - but there is well documented that there is cross reactivity between Lyme and EBV such that its not possible to determine if a person has lyme or reactivated EBV via serologic tests
many people in the lyme support group i am a part of have high titres of EBV antibodies

not to contradict you - just to offer additional information that may be of help

the situation you describe of poor response to treatment is not uncommon in the lyme community - a subset of lyme patients seem to be very hard to treat - either feeling absolutely awful during treatment and having to stop - or feeling no different and make little or no progress.

this seems to be mainly due to differences in immune system function making it very hard to get some people well. or possibly additional burdens on immune function - again preventing recovery.
so perhaps there is some as yet undiscovered blocking factor at play in your case.

i am part way in this camp myself - very slow to make progress - but i have been ill for 8 years now - was undiagnosed and untreated for 5 - and yet with concerted treatment - more than i would every have thought would be necessary - am able to move forward and am now around 70% recovered - able to look after myself, exercise every day, and start to have other interests - like a social life - all of which stopped for many years.

bartonella as a co-infection seems particularly associated with the hard to treat cases
its a good match for vasculitis ( documented in bartonella infections ) and hypoperfusion (and raised VEG-F)

again - apologies if you have heard all this before - only offering information and another viewpoint to try to help you find a way forward as i know how challenging this disease is

more support is available on the lyme support forum below - its an active and welcoming group with many knowledgeable members - i am on of the moderators there

https://www.healingwell.com/community/default.aspx?f=30

all the best!

 

[Wayne]

am now around 70% recovered

Hi @Garz -- Thanks for your excellent post, remarkably good information. I'd say I'm also about 70% recovered after functioning around 20-25% for decades. I had past Lyme and Bartonella diagnoses, and have done most of the Lyme treatment protocols out there (no antibiotics however, which I thought would likely kill me).

Can't really say which things helped the most, but there were a number of things that were significant, such as addressing amalgam toxicity, improving digestion and immune system, liver cleanses, etc.. Most of what I did was nontraditional or alternative type modalities. I put a lot of attention on energy flows which I believe was significant for me.

I believe HBOT was also a big factor for me, and more recently methylene blue, amongst a number of other things. It seems to always be a work in progress. I'm sure you can relate. BTW, congratulations on being able to exercise again. What a huge deal!

 

[Garz]

congratulations on getting to 70% Wayne

having been at 20% for years myself - and knowing how much work it takes to get to 70% - that deserves some credit

i am currently still treating and progressing - but am able to do two 30 minute workouts and a 45minute walk at a fast clip each day - and still have energy to do jobs and chores -

life is still a challenge some days - but the difference to 20% and life housebound and unable to do basic basic tasks is huge

anyone reading this who has dismissed a lyme and associated diseases diagnosis based on testing or lack of obvious response to antibiotics -
especially where bartonella and other co-infections is concerned - testing is very poor - response to treatment can be slow - but hopefully this message shows you recovering quality of life is possible with appropriate treatment