From zero to hero thread

[Pauline91]

I had a few parasites and bacteria checked in stool sample, one 0f which was guardian and it came back negative.

Do you know how or where I might be able to get a more extensive testing panel done for funky bacteria and parasites?

Hi there =)
Basically, almost everyone has parasites. No need to travel in exotic countries, they are everywhere. pets can pass us parasites. We also get them from swimming in lakes and rivers, eating meat and fish, etc. Parasites are becoming an issue when the terrain is toxic, as they feed of toxins and bacterias (mycotoxins, heavy metals, Lyme etc).
There is no reliable test for parasites, just assume you have them. There are a few stories out there of people going from bedbound to functional, just from treating parasites. But usually there is more to it, as parasites are just opportunists creatures taking advantage of a toxic terrain.
Dr Jaban Moore and Dr Jess MD (Jessica Peatross) are often talking about parasites, and the main root causes of chronic illnesses (mycotoxins, Lyme & co, heavy metals), on their instagram accounts and Facebook groups (I really like the group "True Healing Strategies", lots of good advice, and real compassion and support) These people are functional doctors, and are addressing their patients health issues by cleaning them up: detox, detox, detox. I have my first appoitment with the associate of Dr Moore in a few weeks, I think I will create a thread here to keep everyone updated about my journey down the detoxification path =)

I have read your list of goals (cellular energy booster, detox pathways, parasites etc), and I think the approach of Dr Moore and Dr Peatross will resonate with you! =) This is exactly what they are doing.

And you're right, candida is a symptom, not the root cause.

 

[Ronagrenade2020]

Latest update

Coming up for my year 1 anniversary of this absolute hell..

Id say with the help of a boat load of expensive supplements I'm a little better but in the grand scheme of things I'm still very limited.

Supplements that have worked

Mitoq - 3 x a day which is burning a hole iny wallet but its helping
ALA - gives me better energy and delays PEM
B1 - seems to have helped when I added it in
Lysine
Monolaurin - antiviral activity

Taking a bunch of other stuff like echinacea, elderberry and vit c plus some other bits.

Ive just started Valtrex today and I feel awful, it's like I've gone back to the start, when I ony feety knees ache, everything feels heavy and short distances feel like marathons.

I'm taking 1000mg, I think I will soldier through for a month and if there is no change or I encounter a serious down turn I will toss them... My gut feel tells me already that I'm compromising my current state and accepting the posinous effects of the drug in hope of the upside which may give me back some of my life.. The gamble seems worth it even if it temporary makes me feel like crap however given that most things seem to have a detrimental effect I guess I'm also signing up for the fact that it may further reduce my current capacity permanently, although I feel like this will be highly unlikely..

Feeling really down today as a just over a year ago I was living a normal life and had a bright future, now I am at the mercy of this disease, a chronic virus my body can't fight naturally and now some nasty drugs that I would much rather not have to take..

Let's hope some progress comes of this next trial.. My gut is already telling me that this is a bad idea..

 

[Pauline91]

ALA - gives me better energy and delays PEM

Hi there!
I would be very careful with Alpha Lipoic Acid, it has the ability to chelate mercury and arsenic, and is causing redistribution of these heavy metals if ALA is my taken according to its half life (every 3 hours).
Some people are reporting initial improvement when taking ALA without following this rule, but often end up feeling worse because of the redistribution. Same goes with cilantro, chlorella, EDTA, MSM, and intravenous chelation.
(This information is from the research of Andy Cutler about heavy metals chelation)

 

[Ronagrenade2020]

Thanks Pauline,

Ive been on it for the best part of a year now and it's consistently helped me out, the only recent changes have been the valtrex which has floored me within 24 hours of starting it..

I'd much rather allow my body to fight by itself but every time I start to reduce supplements I regress which then affects my ability to concentrate and thusy job /income.


I am starting to feel like recovery is a lottery, aost everything I've tried either is a temporary bandaid which provides 5%improvements or it makes me worse..

The further along I go on my tick list of things to try the more I realise I'm not different or special compared to everyone else, there is no answer andkst of the drugs available make you feel so lousy it's no wonder people ditch them, especially with very little evidence of improvement..

 

[Pyrrhus]

Ive just started Valtrex today and I feel awful, it's like I've gone back to the start, when I ony feety knees ache, everything feels heavy and short distances feel like marathons.

It is common to have strong start-up effects when starting anti-herpesvirus medications like Valtrex or Valcyte. The start-up effects eventually go away as the herpesviruses are suppressed, but everyone is different in this regard.

Many people make the mistake of lowering the dosage to try to lessen the start-up effects. This only allows the herpesviruses to rebound and prolongs the start-up effects. It may also lead to the herpesviruses mutating and becoming resistant to the drug.

Sometimes, raising the dosage can better suppress the herpesviruses and lead to faster resolution of the start-up effects.

Hope this helps.

 

[Ronagrenade2020]

Quick update,

It's now 1 month into Valtrex 1gram per day and I had to say I've noticed no difference, in fact I tried adding an Extra few hundred steps to my morning walk for a few days and it's set me back to the point where I can't do my daily walk, steps back down to c1000 a day from 3 to 4k

I have been working longer hours than usual (from home) and feeling stressed so overall the combination isn't fantastic however I. The only earner iny household and work in a high pressure sales job.

I have been prescribed the valtrex for 4 mo this and will stick with it to see how it goes..

This week marks my year anniversary since I got sick after my surgery so feeling really discouraged as I can walk no further than I could this time last year.

Positivea are that I've managed to find a few supplements that make my mental cognition strong enough for me to do my job which is good.

Eyeing up ozone next, once things open up I may try one or two treatments and see what happens.

Then possibly LDN..

It's funny, I used to read the threads of people trying and failing anti viral or other things thinking "but I'm different, I'm healthy, this is just viral reactivation once that is cleared I will be fine" I am realising that whatever this fucked up state of being is that we are all stuck in is extremely difficult to work out and most treatments barely move the needle, if at all..

I am still hopeful

 

[Pauline91]

Viral reactivation is a symptom of deeper issues. My EBV is reactivated, yet my functional doctor won't be addressing it. We work on cleaning the terrain. Getting rid of toxins and pathogens to restore homeostasis.
EBV, leaky gut, Candida... it all gets back in check when the mitochondria aren't in Cell Danger Response anymore.

 

[Hoosierfans]

Viral reactivation is a symptom of deeper issues. My EBV is reactivated, yet my functional doctor won't be addressing it. We work on cleaning the terrain. Getting rid of toxins and pathogens to restore homeostasis.
EBV, leaky gut, Candida... it all gets back in check when the mitochondria aren't in Cell Danger Response anymore.

How is your doc getting you out of the cell danger response??

 

[Pauline91]

How is your doc getting you out of the cell danger response??

Opening up detox pathways, getting rid of toxins, pathogens, radioactive elements, and repleneshing minerals. Tons of educational articles and videos on his facebook group "True Healing Strategies", and the website of Microbe Formulas =)

 

[crypt0cu1t]

Quick update,

It's now 1 month into Valtrex 1gram per day and I had to say I've noticed no difference, in fact I tried adding an Extra few hundred steps to my morning walk for a few days and it's set me back to the point where I can't do my daily walk, steps back down to c1000 a day from 3 to 4k

I have been working longer hours than usual (from home) and feeling stressed so overall the combination isn't fantastic however I. The only earner iny household and work in a high pressure sales job.

I have been prescribed the valtrex for 4 mo this and will stick with it to see how it goes..

This week marks my year anniversary since I got sick after my surgery so feeling really discouraged as I can walk no further than I could this time last year.

Positivea are that I've managed to find a few supplements that make my mental cognition strong enough for me to do my job which is good.

Eyeing up ozone next, once things open up I may try one or two treatments and see what happens.

Then possibly LDN..

It's funny, I used to read the threads of people trying and failing anti viral or other things thinking "but I'm different, I'm healthy, this is just viral reactivation once that is cleared I will be fine" I am realising that whatever this fucked up state of being is that we are all stuck in is extremely difficult to work out and most treatments barely move the needle, if at all..

I am still hopeful

Have you looked into autoantibodies or anything that may help you get a trial of IVIG/SCIG?

 

[Booble]

You might want to try eating some red meat. I used to eat almost identical to your eating list. When I began adding in some red meat I felt infinitely better.

 

[Ronagrenade2020]

Update
So it's now nearly 8 weeks into my valtrex experiment

A few observations
1. My lymph nodes in neck are definitely smaller
2. When I switched from branded valtrex to generic I took a nosedive and felt awful, this resolved once I switched back to branded
3. My PEM threshold is basically exactly the se (can't seem to crack more than 1000 steps walking distance)
4.i am starting to think that there may be more at play than ebv as nothing seems to be changing


New experimemt started yesterday
Added
- astragalus (apparently it stimulate immune system)
-andrographis
-Japanese knotweed

basically I am assuming I may have a confection and implementing the buhner protocol to see if it makes a difference.

So far already
-experiencing major increase in fatigue
- morning walk was like wearing weights round ankles
-more CNS symptoms during sleep
- fingers and wrists became very swollen and hurt last night(this happened as part of intital infection and flares up when I either crash or start a herb that kills stuff)

I wouldn't be surprised if I had underlying infection andy surgery triggered a dip in immune system function


I've also learned from am immunologist that testosterone can shrink the thymus and affect T cell production.

I have been on testosterone replacement for 2. 5 years and its probably not a coincidence that this happened to me after starting it, I also have a history of performance enhancing use of T so my thymus is probably not in the best shape.

I often find that these herbal experiments get so bad that I have to stop.. seeimg as its only a day in and its already hampering my walking I wouldn't be surprised of this experiment goes south.. Like every other "kill" protocol I've done..

I do have LDN now but I feel iny case thaty main issue is a chronic infection that is jamming upy CNS so I want to focus on killing stuff rather than purely reducing inflammation..

I think if I get to a point where after say 2 years in not improving despite killing stuff off I may have to accept defeat and try to make my life "comfortable" with drugs that give you a bit of quality of life but are not necessarily "healing"

Despite the odds I'm still shooting for the moon recovery wise, I can't accept defeat yet there are just so many things I haven't tried and I seem to get bad herx from loads of things which tellse that my situation is most definitely infection related.. I have to believe that I can heal.

Will update on the buhner herbs as I go along..

I've always lived by the phrase "either I will find a way or I will make one" and that's what is driving me.. People have healed so why not me right?!

 

[Martial]

I was just going to ask if you've looked into lyme disease yet as you kept mentioning trying herbs that are typically part of the buhner protocol. It could be possible that you have a Lyme disease and co infection issue and taking these herbs can cause a strong reaction to those infections if you jump up dose too quickly. swollen painful joints is especially suspect of lyme as you mentioned along with your other symptoms wirh it. You should try miyarisen probiotics to help your gut. There's some good threads on this forum about it from people that had great success, also prebiotic fiber to help feed the new gut bacteria. If you do end up finding you have a lyme disease issue try to avoid people who tell you that you need months and months of iv antibiotics. Peoole recover from chronic lyne without long term iv antibiotics and they can often cause more harm in process. Plus raise the risk of developing auto immune illness from gut dysbiosis. Also FYI Astragalus is NOT good for chronic lyme or certain chronic infections. It's great as a preventive herb to initial infections not after stimulates parts of the immune system that are already overwhelmed with chronic infection. A good place to start with buhner herbs is cats claw, Japanese knotweed, andrographis, and Chinese skullcap. Using other herbs based on symptoms and co infections, and the collagen protocol to help skin joints and ligaments. Start herbs one at a time and build up doze gradually before introducing another. Also either make your own tinctures after purchasing dry powder herbs that are organic or wild harvested or purchase tinctures. Because dry powder herbs taken directly have a lot of trace heavy metals that is okay in small doses of a single herbal, but taking multiple herbs in very high doses makes those trace heavy metals raise to problematic levels relatively quickly. Buhner never mentions this himself but it's something I've found from my own research.

 

[Ronagrenade2020]

I was just going to ask if you've looked into lyme disease yet as you kept mentioning trying herbs that are typically part of the buhner protocol. It could be possible that you have a Lyme disease and co infection issue and taking these herbs can cause a strong reaction to those infections if you jump up dose too quickly. swollen painful joints is especially suspect of lyme as you mentioned along with your other symptoms wirh it. You should try miyarisen probiotics to help your gut. There's some good threads on this forum about it from people that had great success, also prebiotic fiber to help feed the new gut bacteria. If you do end up finding you have a lyme disease issue try to avoid people who tell you that you need months and months of iv antibiotics. Peoole recover from chronic lyne without long term iv antibiotics and they can often cause more harm in process. Plus raise the risk of developing auto immune illness from gut dysbiosis. Also FYI Astragalus is NOT good for chronic lyme or certain chronic infections. It's great as a preventive herb to initial infections not after stimulates parts of the immune system that are already overwhelmed with chronic infection. A good place to start with buhner herbs is cats claw, Japanese knotweed, andrographis, and Chinese skullcap. Using other herbs based on symptoms and co infections, and the collagen protocol to help skin joints and ligaments. Start herbs one at a time and build up doze gradually before introducing another. Also either make your own tinctures after purchasing dry powder herbs that are organic or wild harvested or purchase tinctures. Because dry powder herbs taken directly have a lot of trace heavy metals that is okay in small doses of a single herbal, but taking multiple herbs in very high doses makes those trace heavy metals raise to problematic levels relatively quickly. Buhner never mentions this himself but it's something I've found from my own research.

I had a test for lyme on the NHS that came back negative however I hear that the standard lyme tests aren't that accurate?

I'm planning on getting a more sensitive test done to see Wether I definitely have lyme or not, Im treating myself as though I have it and seeing if I can make any improvements with the buhner protocol as I've heard quite a lot of success stories..

Whatever I have was exacerbated by the surgery I had lst year. Either I got extremely unlucky and got bitten directly afyer my surgery or the surgery allowed whatever was dormant to take hold..

Do you have lyme yourself? Whuch of my symptoms are the most telling of Lyme? You mentioned joint pain? Mine is only my fingers and occasionally wrists, all of my other joints are fine.

I also have confirmed chronic ebv

 

[Martial]

I had a test for lyme on the NHS that came back negative however I hear that the standard lyme tests aren't that accurate?

I'm planning on getting a more sensitive test done to see Wether I definitely have lyme or not, Im treating myself as though I have it and seeing if I can make any improvements with the buhner protocol as I've heard quite a lot of success stories..

Whatever I have was exacerbated by the surgery I had lst year. Either I got extremely unlucky and got bitten directly afyer my surgery or the surgery allowed whatever was dormant to take hold..

Do you have lyme yourself? Whuch of my symptoms are the most telling of Lyme? You mentioned joint pain? Mine is only my fingers and occasionally wrists, all of my other joints are fine.

I also have confirmed chronic ebv

Justin beiber had chronic ebv issues because he also was dealing with chronic lyme disease which will re activate the ebv issues. Normal testing is usually pretty ineffective unless you got a western blot from specialized labs like igenex. Especially with level of illness. These tests check antibodies so while it's effective in very early stage lyme, in later stages of infection where the immune system is overwhelmed and not creating antibodies as a result testing is a bit tougher.

Yes I had lyme disease and co infections which was extremely serious before. I logged into the forums again very recently now because I have a very mild lyme disease case of re infection currently and was going to seek advice on some good treatment ideas from others on here to deal with it while avoiding antibiotics. Lyme joint issues can be random and bounce around, doesn't need to be all your joints or just big joints like your knee and etc.

I'm assuming you also looking into auto immune issues like lupus though? Also certain diseases like hepatitis cab cause some of your symptoms but all that stuff is easier to test and diagnose. Keep in mind though when it comes to auto immune issues that lyme can mimic a lot of those too. So important to differentiate because auto immune treatment is immunosuppressive.

It can take quite a bit of time before you find a lot of success with the herbs depending on how long you were dealing with this prior too. It took me about 9 months before I noticed some big changes myself when I was first sick but I did fully recover from all my issues before.

 

[Ronagrenade2020]

Update
Managed to get up to 6000mg andrographis, 6000mg of cats claw and 5000mg of Japanese knotweed plus 2000mg of skullcap.

Added in a pot of cistus incanus a day and boom.. Back in bed, burning in stomach, palpitations and major fatigue with weird dreams..

One symptom I don't understand is if I over exert I get pain in my stomach and nausea that gets worse and worse until I have to stop exerting myself... Is this my immune system or something like the infection replicating because of the additional movement? Seine else said it may be the spleen?

Going to go for a walk later.. Let's hope that doesn't set me back even further..

Given that I am herxinh from the herbs and tea I suspect confections..

LDN starts when I'm out of this herx/die off/I don't know what the fuck is going on, it may have simply been because I went for a walk and the herbs are a coincidence.

How is this even humanly possible.. The mechanism of this illness is insane...Will never understand how walking can actually be bad for you.. Absolutely crazy

I will never come to terms with this..

 

[Martial]

Update
Managed to get up to 6000mg andrographis, 6000mg of cats claw and 5000mg of Japanese knotweed plus 2000mg of skullcap.

Added in a pot of cistus incanus a day and boom.. Back in bed, burning in stomach, palpitations and major fatigue with weird dreams..

One symptom I don't understand is if I over exert I get pain in my stomach and nausea that gets worse and worse until I have to stop exerting myself... Is this my immune system or something like the infection replicating because of the additional movement? Seine else said it may be the spleen?

Going to go for a walk later.. Let's hope that doesn't set me back even further..

Given that I am herxinh from the herbs and tea I suspect confections..

LDN starts when I'm out of this herx/die off/I don't know what the fuck is going on, it may have simply been because I went for a walk and the herbs are a coincidence.

How is this even humanly possible.. The mechanism of this illness is insane...Will never understand how walking can actually be bad for you.. Absolutely crazy

I will never come to terms with this..

You could have some gut dysbiosis or SIBO. Dysbiosis is very common with illness. Lots of things can affect the gut and a big part of the immune system is in the gut. I'd try getting on some strong probiotics and upping your prebiotic fiber intake. Also if you're taking those buhner herbs you would find good benefit also adding andrographis. Just watch out for allergic reactions

 

[Reading_Steiner]

Interesting how you only had it for a year or so and you are trying so many things, the pain you describe is also interesting, would I be right to say that its a burning ache a few inches above the belly button, centred or slightly to the left ? that was one of my first recurring symptoms after the initial onset and I still experience it on occasion. Curious if you get dizzy and disorientated sometimes if you try to lift heavy weights beyond a certain threshold. Walking is gonna be bad yeah beyond a certain point, which varies, you should be able to feel when its getting too much. If I have to walk an entire kilometer for example I will get insomnia and temperature problems that night, and potentially feel a difference for weeks after, I avoid that type of exercise. I rely on lightweight electric vehicles to get around outdoors.

Going after the viruses and the stomach is the most obvious target, its possible that probiotics got me out of the worst situation, but it could just be that I was going to get out of it anyway through rest / passage of time. If you haven't tried taking plain BCAA those are good for maintaining a level of functioning when you are already doing OK, but I get the impression they are much less useful when someone is in bed half of the day.
You probably figured this out already but there seems to be an 'aerobic capacity', a level of energy output that we can manage without incurring stacking PEM, consistently exceeding it increases PEM and can also lower that aerobic capacity window, your heart rate will start to increase, you might feel a bit rough etc.

What causes crashes though... the transition into a severe state, I am wondering about that, I think its something different than just failing at pacing for long enough, it feels like a change where the disease becomes 'active' vs 'passive', I suspect it has something to do with the immune system as spending days in certain rooms with certain chemicals ( initially my dusty garage with artificial rubbery / foam floor tiles ) seemed to set off a downward spiral for me that went on for months, it coincided with the emergence of hard burn like areas on the side of my index finger, then I got bad arthritic like finger joints, unable to click a mouse level, but these completely went back to normal after 2 years +. That might be something to look out for, whether you are sensitive to the air quality or not.

 

[Ronagrenade2020]

Quick update.

Started LDN today... Guess I'm in the 5% who feel wiped out after taking it, had to have a nap within the first hour of the dose 1mg....
Been out for a walk since which felt OK but I feel a bit spaced out like I'm on a coffee withdrawal...

Going to try 1mg for a week and hope the fogginess will pass and I will see some benefits.

Will thrn aim to increase. 5mg a week.

Hoping this will be the thing that pushes the PEM threshold up and allows me to walk around a bit more without feeling like a bag of dicks..

Hopeful but skeptical...

 

[Ronagrenade2020]

LDN thoughts.

_immediately worse brain fog
-stary, zombified ied tiredness
- worse sleep
- mild constipated
- weird feeling in body

Hasn't at all increased my PEM threshold and doesn't appear to be reducing inflammation.

I've just crashed after the placebo effect has worn of.

I've realised LDN doesn't work for PEM, most likely because PEM is mitochondrial insufficiency becoming evident in exertion.. I thought this method may be driven by inflammation but given that my swollen fingers have improved but yet my PEM threshold is the same, my insomnia is rge same and my fatigue is actually worse it tells me that inflammation isn't the main driver of my symptoms.

CHRONIC infection (or perhaps the neurotoxins from the infection) directly damaging the cells which render them incapable if replenishing mitochondria and creates rge deficit.. Only way to improve us to get the infection out!!

Starting ozone next week and looking into thymosin alpha 1 for my T cells... LDN seems like a crappy way to modulate the immune system, will just go straight after the T cells with TA1 instead..
.
This disease is bullshit.. I mean, imagine ever thinking that you'd be "disabled" because your body can't make its own energy... Fucking retarded! How in all the millions of years of evulotion did such an inefficient way of dealing with infection develop? It's absolutely unreal.. I'm still reeling from the realisations that I'm totally fucked and that my body isn't coming to save me, infact no supplement, drugs or treatment are either... This experiment was a hard hitting truth.. I thought LDN would give me some of my life back, its done absolutely nothing...

On to the next..

10 months to go to beat this before 2 year mark, so far I've not seen any natural or sustainable improvement that isn't being propped up by a very expensive supplement regime..

I can't and will not live like this