Research Group for ME/CFS, Chronic Disease, Aging and Cancer

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GodLovesATriers Blog (Diagnosed with ME, 2016)
« on: June 14, 2021, 01:20:41 AM »
Post of my blog entries are copied straight from another blog, so will just post them here, they will be somewhat out of context as I am 35 days in, but hopefully still useful!
« Last Edit: June 15, 2021, 01:35:43 AM by godlovesatrier »


Re: GodLovesATriers Blog
« Reply #1 on: June 14, 2021, 01:21:07 AM »
Night 34:

Slept pretty well. Took melatonin 1.5mg, 200mg 5-htp, 100mg magnesium, 25mg nytol, 200mg magnolia bark extract (tolerance builds quickly with this stuff so it's a once a week thing).

But started with a sore throat and a pretty blocked nose about 4am. However this could just be related to the pollen count which is very high currently. But it might not be? No way for me to know.

My muscle pain resolved with some paracetamol last night before bed. Haven't got any since waking. I wouldn't say I have PEM thismorning, it's more I feel like I've been beaten up or been on a night out and you wake up the next day dehydrated, sore throat, feeling like you have a cold. My muscles feel very tired today, even though I didn't actually walk anywhere or anything yesterday. But that's how they feel. So 200mg egcg doesn't appear to have fully blocked the PEM like it did before long story short, but to be honest I am convinced this is due to the lions mane as it was blocking PEM reliably before I started back on it.

Day 35 - Dose 1

So I've taken my first dose, glycine, nac, pathothenic acid, probiotic, yoghurt + 20 minutes later the egcg, lions mane, omega 3, b complex, zinc, etc. I also had my usual breakfast with 35g of protein and 24g carbs, a little fat. So hoping that will give me a pep up, when I add in my 50-60g protein for breakfast as well. Overall though the protein isn't doing much, it's helping but the heavy lifting is being done by the R-ALA, EGCG and seemingly the glycine and nac are also helping a lot too. That is to lower inflammation, block or buffer PEM, lower ROS and have their anti oxidant effects.

Going out about 3pm to try and do some wild swimming, won't be doing much though as I am fairly sure it will be too much. But a paddle and floating on some water might be good for the soul even if I can't tolerate a swim.


Re: GodLovesATriers Blog
« Reply #2 on: June 14, 2021, 02:26:03 AM »
Night 35:

200mg egcg sat and sun seemed to help a lot with energy and PEM. But while I don't have any muscle fatigue I am pretty spaced out and disorientated. But that might be the covid jab or the fact that I haven't been taking any of the reishi.

Day 36 Dose 1:

Felt a lot dizzier and more out of it after the immune herbs than I did before I took them. On the whole still feel pretty whacked today, but I did a lot this weekend so I am not exactly surprised. Concentration also went out the window once I took the immune herbs. Will see how I get on.


Re: GodLovesATriers Blog
« Reply #3 on: June 14, 2021, 02:34:32 AM »
GodLovesATrier's old blog: https://forums.phoenixrising.me/blog-articles/authors/godlovesatrier.31381/

This is the most comprehensive reporting so far on someone's experiences with Josh's protocol.
« Last Edit: June 14, 2021, 02:36:29 AM by johnnycoconut »


Re: GodLovesATriers Blog
« Reply #4 on: June 14, 2021, 07:06:32 AM »
Thanks Johnny!


Re: GodLovesATriers Blog
« Reply #5 on: June 14, 2021, 07:18:15 AM »
Day 36 Dose 2:

Felt pretty whacked before I took my second dose and then felt a lot better.  This was over an hour ago.  Feeling a little bit more awake too.  Muscles of the neck and upper body are fairly stiff but this is expected after taking 3.5 grams of BCAA's the day earlier and managing 15 minutes of breastroke in an open water lake.  Felt great to be out on the water, although I am always determined to get a cure not just "a bit better".

Bit of background for those that are new.  I had the covid vaccine on the third of June.  I went off Reishi and Lions mane on the 1st of June and only went back on the reishi on the 10th.  I felt terrific and was trending towards remission pre jab, but over the next 12 days (post jab) a lot of my symptoms which had vanished on Josh's protocol came back.  So it makes sense that it will take time to recover from this.  The immune response from the AZ vaccine occurs over 4 weeks starting with t cells and ending in the 4th week with the immune system mopping up.  In the 2nd and 3rd weeks the b cells copy the mrna in order to create the immunity required against the virus.  In my own experience I don't tend to feel better until 14 days after the jab and even then it can be another 2 weeks before I am completely better.

Therefore I think I probably won't be back to feeling as good as I did pre jab until the end of June.

While I was off Lions Mane and Reishi I was able to experience the benefit of taking egcg and everything else.  If it wasn't for the covid jab I would have felt pretty terrific on this combo I think and been able to do a lot more.   As it was I was doing a reasonable amount but resting as much as I could.

I've also noticed I seem to be able to tolerate gluten much better now, it doesn't appear to make me fall asleep anymore and I don't get bad muscle fatigue from it.  Even so my diet macros look like this most of the time:

160g protein
130g carbs
110g fats

I've started to bulk up and put on muscle without even trying, plus the strength in my muscles has increased a lot too.  I don't actually take anything else that isn't listed in V 3.2 of the protocol.  I prefer not to take BCAA's - so these are more for emergencies only.  Why don't I take them?  Because they cause me to over exert myself and create a crash in terms of energy deficit so it's not worthit.

Side effects have been minimal but currently are:

1. Slight over stimulation mentally, but this tends to disappear when you add the reishi and lions mane back in.
2. Getting 7-8 hours a sleep at 125mg egcg dose without the lions main or reishi. 

EGCG

I have experimented with the following doses

25mg - didn't do anything for my PEM
75mg - didn't do anything for my PEM
125mg - buffered PEM 60 to 80%
200mg - blocked PEM

I did also try 154 mg but didn't notice much of an effect.

--

My current plan is to incorporate the reishi and lions mane and oat bran back in at full doses and ride the immune response train until I get back to where I was before.  Which was very few symptoms, very little PEM, dizziness must be gone and mood must be significantly improved. 

Remission for me will consist of: no symptoms, some pacing but not a huge amount, able to exercise twice or three times a week (fitness considered), mood stable, no PEM.

Be interesting to see if I get there.


Re: GodLovesATriers Blog
« Reply #6 on: June 15, 2021, 01:19:39 AM »
Night 36

I've had a sore throat for a few days, not the typical ME sore throat (Which I haven't had for weeks anyway), this ones been more like tonsillitis or something.  Anyway I checked my tonsils and throat last night to find it was all pretty red raw and my tonsils were quite swollen.  Fairly convinced I might have a strep infection as my throat feels sore and my tonsils are swollen and last night it was a little painful. 

Anyway I have tried everything for strep (before the eventual...call doctor...get given anti biotics), I'm also allergic to most anti biotics, apart from clindamycin.  So I have tried a lot of natural treatments, bathed the tonsils in coconut oil 3x a day for 20 minutes, tried augustifolia tincture on the offending area (I think that made it worse), I've tried andrographis to no effect and have tried several other things like garlic lozenges and the like.  The last one being disgusting to be honest.   Of course I've tried honey and lemon and all those bull**** strep treatments too.

I realised a long time ago if you couldn't stop the infection or reduce the inflammation you were kind of stuffed which got me to researching Lauricidin last night, as a very much last ditch attempt at finding something that will work.  Turns out Lauricidin is highly effective against gram positive bacteria (https://www.monolaurinandmore.com/articles/monolaurin-strep-throat) and all strep strains in Vitro.  While I can't be sure about it's in vivo effects it does produce a fairly strong immune reaction when I take it.  I've also had it work on tummy bugs and thrush before now so I figured it might work for this.  I've started to take it as of last night and woke up thismorning feeling quite a ot better.  So will continue take it for a few days.  It seems to have a half life of 2 hours and as I am sure people know dosing for bacterial infections is pretty critical so I am going to take it every 2 hours.  I even woke up at 2 am last night and took more, which reduced the swelling in the tonsils in about 30 minutes.  I am taking the max dose 3000mg monolaurin per dose.

As an aside I think if it wasn't for this infection I'd be feeling pretty good as the reishi seemed to give me an energy boost last night.  But I also had a very swollen neck, throat etc, just feels like the infection is in these tissues, but my body is gradually removing it.  So hopefully tonsils next and then that will be gone!!

The swelling in my tonsils is certainly not that noticeable today when swollowing so that's great.

So didn't sleep that well but that's because I woke up slightly sweating and a bit warm.  I also had a headache all night, which never happens, so definitely an infection.
« Last Edit: June 15, 2021, 01:38:44 AM by godlovesatrier »


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #7 on: June 15, 2021, 10:50:19 AM »
Day 37 - Dose 4

Taken quite a lot of Lauricidin today (about 18,000mg as opposed to the max I've ever taken 9000mg.). I took this as an experiment to see if dosing every 2 hours would kill strep.  It seemed that just before my 2 hourly dose symptoms began to get worse. Abating every time I took a dose. I didn't take an extra dose thisevening though as the immune response has really wiped me out. Lauricidin increases my energy levels and my sex drive which is the same thing valtrex does to me. Bizarrely reishi and beta glucans don't appear to do this but my overall energy levels improve.

I do feel loads better tonight but my legs are not in the best way. It feels like really bad fatigue if I'm honest currently. Going to see how I feel after dinner. But as I've still not got rid of the suspected strep that might be giving me the fatigue.

I'm going to take a lateral flow test tonight as well so I can rule out covid. As the new strain apparently resembles a cold with no cough or loss of taste and smell.

Also this is only the second week of the covid jab so I can't be sure if there's anything going on under the surface with my immune system. I'm also hoping that my overall protection hasn't dropped because of this.

I'll keep you all posted on how I get on tomorrow.

I'm still taking everything on the protocol outlined in my last post. No change there
« Last Edit: June 15, 2021, 10:53:58 AM by godlovesatrier »


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #8 on: June 15, 2021, 01:57:37 PM »
How in the world did you get strep?  Where would you have picked it up?  I have lots of experience with this because my daughter when an adolescent used to get strep every two or three weeks.  It was awful.  Anyhow, I'm glad the monolaurin worked.


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #9 on: June 16, 2021, 12:42:09 AM »
@perrier - how indeed.  Well I know how I got it, it's not a flare up.  i think I caught it early before it really got going, which seems to be the trick with sudden sore throats and tonsil swelling.  Swelling in my throat and neck is better too, just very weak now and feeling rather sick still.  I do have  a cough though which never goes a long with strep, so maybe it's something else?  It definitely isn't hay fever.  Certainly a virus that's for sure!  I did a covid test last night, that was negative.

Night 37

Will keep this brief as my energy levels are lower than usual. I think the infection in my throat must be on the way out as it's died down a lot. I haven't taken any Lauricidin since I went to bed last night, but I am incredibly weak in my legs now. So I'll be in bed today.

Still taking the protocol, just need to get over this bug and recover my strength. I do have fatigue but it doesn't really feel like ME type fatigue, it's more weakness and normal fatigue like after an infection.


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #10 on: June 16, 2021, 11:33:13 AM »
Day 38 - Dose 4

Still on the protocol at 125mg egcg followed by everything else.  I did a little summary of what I'm taking on Hip's ME recovery thread recently.  On the whole I think my ME symptoms are still in check to be honest, even though I've got fatigued it's localised to my legs whereas with ME fatigue it was basically everywhere, and all muscles would tire on exertion.  Whereas it's primarily my legs that are useless at the moment, the rest of me including my brain seems ok.

I did stop taking Lauricidin today but noticed that this just made me feel like sh** all day.  Sickness, legs very very weak, and generally very drained.  So I started Lauricidin again thisevening and I've got a low temperature now, quite a bit of phlegm in the back of my throat and I have more energy (I assume the energy comes from bacterial clearance from the body but I can't be sure) and am able to hold a conversation.  So I reckon I'll be dosing 9000mg for the next week or so to get rid of the infection, candida or strep or whatever it is.  Saying all that I am sneezing (which is not due to hay fever) and my voice is very hoarse and deep and I have a cough, so that sounds more like a virus of some sort than bacterial.  My bet is it's a bit of both.

In June 2020 I had acute ebv while also suffering from a very bad bacterial throat infection (I think that was strep, the NHS never did a culture test even in A&E).  What I found out was that normally for me at least if I get a bacterial infection ebv normally starts to run amock, so I suspect that the protocol is keeping the ebv at bay and the Lauricidin is killing the bacteria.  It's taken about 2 years of experiments to find something that kills bacteria.

I tried the following without potency or overall effect:
Cleavers tincture
Black Walnut tincture
Echinecia Augustifolia tincture
Andrographis Paniculata powdered extract
Colliodal Silver 
Japanese Knotweed

Bottom line is that none of these worked, but one of my other experiments was with Lauricidin and this has worked for 3 separate infections, two of which were thrush and the current one which I am not sure about.  So I am therefore convinced it works.   For a long time I was really annoyed I couldn't find anything for bacterial infections, so I am pretty thrilled I finally did.

However long term Lauricidin use seems to also kill good bacteria, I noticed this after my last 2-3 week cleardown brought on acute nausea and stomach pain and whenever I ate anything my stomach felt like it was burning.  Probiotics fixed this within 3 doses.
Also in Sept 2020 it gave me a rash on both under arms which presented as an erythsmasma rash and didn't respond to any kind of treatment  from my doctor.  Eventually I discontinued the Lauricidin (which I was taking at the time to lower ebv levels and give me a mental boost as I was struggling at work) and the rash disappeared.

So long term use of Lauricidin for ME appears to be contradicted at least for me, but short term (up to 2 weeks) appears to be an ok length of time to clear down nasty infections.

Hopefully I'll start to feel better in a few days and will have some strength back by the weekend.

Also this is day 10 of my covid jab (2nd) so I think my body is probably weaker currently than it would be anyway.

The protocol is definitely helping to keep me strong and prevent my ME from flaring right now.




Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #11 on: June 16, 2021, 11:27:08 PM »
Night 38

Infection seemed to clear about 10pm last night. After two more doses of Lauricidin 6000mg into two split doses I felt a lot better.

I've still swallowing a lot but physically I feel ten times better. No fatigue or PEM at all either. Completely blocked. Which is pretty amazing.

So I'll be trying to bump up my oat bran intake of the today and might take one dose of Lauricidin later to clear out any stragglers.


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #12 on: June 17, 2021, 03:05:40 AM »
It's occurred to me that while people with ME might be able to get better with Reishi, some pathogens will need other combinations to get rid of them.

Recently on another forum there were quite a few studies showing different types of pathogens in ME patients, one study said 98% of patients in a cohort had mold in there bodies.  There aren't too many studies showing rates this high but another contender which appears regularly is Strep bacteria.  Over my 5 years with ME I did lots of experiments.  This is a rough overview:

Andrographis: Experimented with it for 2-3 years at doses as high as 6 to 8g a day, as little as 2g a day.  It has multiple effects on the body, many of which are useful in ME.  But I found that it was primarily good for its antiviral and anti parasitic properties.  It's effect on bacteria appeared to be decent but not as potent as others.

Combination: Lomatium, Redroot, Chinese Skullcap, Isatis, Milk Thistle and Dandelion: Experimented with this for about 1-2 years.  Took it every day solidly for about 5 months, which put me into a state where I was able to start doing small amounts of exercise, running for 1-2 minutes once a week.  However I soon learnt that this was making my ME worse, ultimately it was a failure at controlling the ME.  However it did promote an immune response when there was something in my body that was making me sick.  Also it's very good at killing lots of viruses.

Lauricidin: Experimented for about 12 months.  Got me out of a few bad patches as it increases energy levels.  Not sure how it does this but it could be that once certain pathogens are cleared from the system energy levels begin to rise.  It could also be immune stimulation, which in and of itself increases energy levels slightly anyway.  Like the surge of energy before a cold, that most people probably don't even notice.  Lauricidin has killed off two candida infections that I've had, controlled my ebv levels after one acute re-activation and got rid of a bacterial infection, either strep or candida not sure which.  These are very tricky things to get rid of but Lauricidin at a dose of 9000mg a day (Monolaurin) does the trick. 

All these experiments recently made me wonder, if ME patients did have mold, strep and viruses in there systems (we know they have the last one) and the studies seem to say they definitely have the others too, then it makes sense that only a combination treatment, with the correct immune boosters and long term control of a possible seed virus (a virus that down regulates the immune system from the get go allowing all other pathogens to multiple or infect the host) might work.  A combination treatment might look like small amounts of the above 3 compounds.

Say 1400mg andrographis extract, with a tincture anti viral combination, inc an immune modulator like Josh's beta glucans and a apoptosis singaling compound like Josh's triterpenes, with half or a quarter of a scoop of Lauricidin 3x a day. 

There's also a question about ME severity.  If the bodies immune defences become so badly weakened that anything can get in or multiply, it makes sense that some patients might need to get rid of more pathogens than others.  Would this also be an indicator of severity?  The more severe the mitochondrial breakdown (as outlined in Josh's main paper) and then the longer the persons immune defence has been lowered - the more severe they are but also the more pathogens they happen to have?  Just a theory.  But we don't understand severity very well at all in ME.  Some patients work part time just fine, some full time but with difficult for years.  Others manage to exercise for decades before they become severe.  Others go into remission naturally (but they seem to be a rather small number say less than 5%).

So it got me thinking, even if we all took one treatment (one compound) and got a little benefit, maybe the reason we never get into remission is because we actually need multiple compounds to get there, not to mention the immune and bodily support that Josh outlines in his paper and protocol. 


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #13 on: June 27, 2021, 01:37:12 AM »
Will summarise it's now Day 48:

I got my 2nd covid jab (AZ) on the 3rd of June.  I came down with a virus and I think infection a week later.  This caused a major relapse went down to 50% on the hummingbird scale.  A few days into this it wasn't shifting and was just sort of sitting in my throat, neck etc.  My whole body at the time though was consumed with fatigue and exhaustion.  The reishi was started more or less the after I got sick, which only further confused and clouded things.  I spent most of the week in bed and lost the use of my legs (incredibly weakness in them, I also slept for 4 hours one afternoon and was pretty wiped out all the time).  Started dosing with ParActin and Lauricidin.  When I realised my tonsils were swollen and it felt bacterial I took 15g Lauricidin in one day and then 9g the day after, in split doses.  The half life is 2 hours so on the first day I took Lauricidin every 2 hours.

This beat back the infection nicely, but in other ways I felt worse.  Had I biofilm busted or was the Lauricidin messing up the protocol?  WAs there an interaction with something?  What was going on?  Well I never figured this out.

A week later I was feeling a bit better, but the ParActin was making me extremely angry so I stopped that.  Then my symptoms in my neck started to come back so I went back on the Lauricidin.  Over the course of the next week I wasn't that sure I was making any progress.

It's now day 48 and I ordered a new brand of egcg which arrived yesterday, this one looks more like the old batch I used to use.  Interestingly I did feel a lot better the evening before in terms of PEM - coincidence?  Maybe but I did do a few things yesterday which I expected would have floored me but didn't.  I haven't done any exercise at any rate as I am still in bed as I have been for the last 2 weeks trying to get rid of the virus.

It's now my belief I've got a few things going on but that ultimately I probably have an virus living out near my vocal chords as they have been hoarse for awhile. 

Also the last two days I have been taking 2g of reishi and lions mane.  Someone on the PR forum commented that 1g isn't nearly enough if the body is really sick - they might have a very good point.  I've also been taking 3000mg lauricidin 3 or 4 x a day as that seems to produce a bigger herx. 

Currently nowhere near where I was before the covid jab.  Still trying to get back to PEM 100% blocked, able to do graded exercise and also zero inflamation in my body.  As currently lymph nodes and glands of the throat still see swollen, as do the lymph nodes of the neck. 


Re: GodLovesATriers Blog (Diagnosed with ME, 2016)
« Reply #14 on: October 25, 2021, 05:08:23 AM »
Not sure what day it is but I've been on the protocol for about 6 months.

It's taken me from 60% to 80% hummingbird scale.  

In summary I no longer take lions mane due to terrible dysphoria, loss of libido etc.  This resolved upon stopping it.

I take b vitamins occasionally, but not all the time, as my body got to the point where taking them caused me terrible brain fog and not taking them made the brain fog better.  I have discovered an inverse relationship between glutathione nad vitamin b12.  If b12 serum is high, glutathione will use up b12 in cells and lower the serum reading.  This means if you take b12 and it causes brainfog and extreme tiredness (as it did me later in the protocol) taking glutathione to lower a high b12 serum count will lower it and then when you take b12 again you'll only get the benefits (more energy, less fatigue, sharper thinking).

I removed egcg because it makes me a bit hyper, impatient and sometimes angry.  It also was making me feel sometimes very tired, but that might have been a coincidence.  I did attempt to do more than I Was able to (push) in July 2021 which didn't work.  At the time I was taking high doses of egcg, which did not block PEM or fatigue fully and my stamina levels were overall quite low.

Every time I've had a vaccine it's caused my immune system to weaken heavily, causing return of some symptoms, but mainly dropping 10% on the hummingbird scale each time.  Dose 2 astrazeneca I lost the use of my legs for about a week.

I recently added nattokinase to my protocol.

To summarise I no longer take b vitamins every day, egcg every day and don't take lions mane at all.  I've never taken creatine, I only occasionally take glutathione.  I still pace and am very careful not to overdo it.

Prior to the flu jab I was doing 40 minute walks 3x a week with a 50 to 60 minute walk once every fortnight.  I hope to be back to a decent level of functioning in the next few months, although I am due to get a covid19 booster so I doubt that will happen.

I also take 2g of NAC 3x a day, which is higher than many people take.  I believe this to be beneficial.

And I take 3x magnesium types malate, ascorbate and biglycinate in small doses 3x a day too.