From zero to hero thread

[Ronagrenade2020]

Thought I would start a thread documentingy experience from practically 0(bedbound) to some level of function.

I seem to have been struck down very hard, was previously a bodybuilder and trained 6 days a week intensely, workaholic living off of caffeine, dopamine and adrenaline and whilst I ate moderately healthy I did have a few issues such as much athletes foot and occasional ringworm suggesting some imbalance in the gut.

As a youngster I suffered terrible acne and was put on round after round of oxytetracycline for long periods and eventually put on 6 months of roaccutane. I had taken a moderate course of prednisone many years ago too which may have further exacerbated the gut imbalance.

I have been sick since March, originally I thought it was covid but having rethought the situation I think that due to surgery in February I had a dip in immune function and as a result I have reactivation of EBV.

I tested positive for EBV the following
EBV Vca IGM 81 *H (indicates current or recent infection)
EBV Vca IGG 135 H
EbV ebna 138 *H
Lyme - negative
Hep a/b/c- negative
Cmv IGM- negative
Cmv IGG- 0. 6(considered unreactive /negative)
Herpes 6 PCR - negative
HcV PCR- negative
HBv PCR-negative
HIV pcr negative

Planning to have HHV-6 and HSV 1/2 antibiodies tested as well as parovirus 19.

Current supplements
Lipo C - 2000mg/day
Lipo Glutathione - 500mg/day
Vit D 3000iu
Zinc 15mg
B12
B6 50mg
B5 550mg
Vit A 8000iu eod
Curcumin 2g
LAURICIDIN 3 scoops
Lysine 3grams
Vsl3 1 sachet
Sach boulardi 5 billion EOd (recently started and getting die off)
Chlorella 5grams
3 scoops greens
Seaweed caps x 2
Slippery elm 2g

Mito supps make me feel woslese so don't take them

Awaiting further tests on autoimmune markers, l,cytokines, lymphocytes and NK cell numbers and subgroups.

Previous results show raised complement and raised immunoglobulins (namely IGM and IGA)

Diet

Breakfast :
Scrambled eggs and smoked salmon with spinach, mushrooms, onions, peppers and tomatoes

Lunch :
Chicken bresst
1/2 pack of brown rice
Greens (broccoli /green beans or asparugus)

Dinner :
Same as lunch

Drinks :
Water with lemon

Goals :

Work on gut disbiosis, doing well with this at moment but still have fungal nail infection and foot but no ringworm, bloating or gas anymore. I tend to get bad due off and have had to stop anti candida supplements

Support immune system with relevant vitamins for optimal function

Support detox pathways and provide sufficient anti oxidant support.

Natural antiviral supplements to try and reduce ebv symptoms

Seek medical advice on using antiviral drugs and immune boosters

Trial Iv therapy such as vit c and ozone, possibly HBOT

Improve sleep

Rest and pace and spend day sitting or in bed until significant improvements allow gentle increase

Planning on deciding on next steps after next round of bloods and possibly trialling valciclovir and if tolerated maybe adding in inosine or some sort of immune stimulant(if t cells and nk cells come back on the light side)

 

[Hipsman]

Melatonin can significantly improve sleep, I also found 5 mg melatonin really helps if taken sublingually 30 min before sleep.

 

[LINE]

Raised IGM and IGA could indicate parasitic infection, Giardia is a common protozoa parasite and I did see some studies showing IGM/IGA issues. Protozoa will suck the life out of people. Parasite testing is hit or miss.

Ozone user (+500 treatments) - ozone is a great therapy for many viral issues. I purchased a medical grade unit which in the long run is cheaper. Though, I would think some ozone treatments at a clinic may be a good test since a few treatments could tell whether it is effective.

 

[Hipsman]

Just today found drug interactions checker, you might want to check it since you take many things at once

 

[Ronagrenade2020]

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?

I have heard the name chlamydia pneumonia floating around too but I am a bit clueless on anything else but basic viruses.

I'm 99% sure I have candida but I don't think it's the primary cause, I believe it is a viral reaction after my surgery or covid. I am keen to explore all avenues at present as I feel like my symptoms are directly caused by a pathogen and may be able to be reversed /improved if I can find the culprit (ebv is the main target currently)

 

[Hipsman]

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

Don't know anything in particular, maybe there's some useful info on mecfsroadmap.altervista.org . You could also ask Hip, he created that roadmap and knows allot more.

 

[Ronagrenade2020]

I know it's not that simple but I jist got labs back from my latest EBV draw (asked for early antigen and they ran the same tests 🙄)

Anyway
1st test(high IGG antibodies) I had to be wheeled in on wheelchair as was feeling horrendous and couldn't stand up.
2nd test (lower IGG antibodies) I walked in and energy levels were better and better orth tolerance... Also now taking 3 scoops Lauricidin, 3grams lycine and a few other bits..

I noticed that the IGM had actually gone up which I assume may be lab variance?

@Hip any thoughts on the variance? Random lab vairance or something else? Not sure why the IGM would go up and the IGG come down.. Very odd..

Thinking a bit of time and a bit of aciclovir may bring this down into range..

 

[Hip]

@Hip any thoughts on the variance?

Doesn't seem to be any major changes in antibody level; you would expect a bit of variance from one test to another.

After the acute infection, EBV antibodies naturally decline over time (see graph). Although if you have EBV associated ME/CFS, then some antibodies will remain raised indefinitely.

According to Dr Lerner, the EA diffuse IgG is often chronically elevated in some EBV ME/CFS; in other EBV ME/CFS patients, Lerner finds the VCA IgM elevated (which may be your case).

Source: here

 

[Ronagrenade2020]

Thanks @Hip i am struggling to get any doctors to investigate my findings further or get access to a more comprehensive EBV test..

From what I can see it looks like it could be either
A) convalescence from primary infection
B) reactivation

I also noticed that my results, specifically the IGG are nowhere near as high as many of the test results I have seen for EBV, am also struggling to find data on what "high levels" truly means in comparison to general public and other MECFS folk.

If I wasn't so severe I may assume I was recovering from PVF but doesn't feel like it at 8.5 months in and still pretty much sofa /housebound on good days

 

[Hip]

i am struggling to get any doctors to investigate my findings further or get access to a more comprehensive EBV test..

Here in the UK, we don't have many doctors who have understanding of viral testing in ME/CFS.

I also noticed that my results, specifically the IGG are nowhere near as high as many of the test results I have seen for EBV, am also struggling to find data on what "high levels" truly means in comparison to general public and other MECFS folk.

Trying to find out what high levels means is not straightfoward. Each ME/CFS specialist will have their own interpretation, and it will be specific to a particular lab test.

As a rough guide that I devised for myself, I take high levels to mean 16 times or more the lab reference value for negative on the test. This has no real scientific basis, but simply comes from looking at Dr John Chia's guidance on what high levels means in the enterovirus test. On the ARUP lab enterovirus tests, he says high levels are 1:160 or higher, and the lab reference for negative is 1:10, so that's a factor of 16 difference (ie, 160 ÷ 10). But I am not sure if there is much validity to this.

What are the lab reference values for negative in your tests?

From what I can see it looks like it could be either
A) convalescence from primary infection
B) reactivation

EBV antibody interpretation is more complex that other viruses, as there are more antibodies to take into consideration. I don't fully understand it, but I do know that Dr Lerner would use antivirals if the EA diffuse IgG or VCA IgM were elevated.

 

[Ronagrenade2020]

I contacted 2 well known UK cfs docs and they are fully booked until February, the other organisation I felt a little like I was being set up for a pyramid scheme and was very smoke and mirrors about pricing so I didn't bother..

Its a real shame that we have to take matters into our own hands but we have to do what is best for ourselves based on our individual circumstances..

The ref ranges for env are
Vca IGM/IGG <20 u/ml = negative
EBNA <5 = negative

So that puts my Vca results between 4 and 7 times the range... Not that remarkable but the concern is the IGM.

I'm going to try aciclovir as it's the cheapest and easiest to get in the short term and if I can manage the side effects I will push the dose up and retsts in a month.

If I can handle a month on aciclovir I will probably switch to valaciclovir and give it a few months and see what happens.

If my primary infection is EBV then I am not sure if something like Tenofovir would work? I get the idea that it works on more than just retroviruses and may preturb some of the inflammatory markers?

Im waiting for my cytokines and lymphocytes results before determining Wether to focus on immune modulation or increasing th1 activity.

 

[Ronagrenade2020]

Tried a teaspoon of cats claw this evening, now laying in bed with a feeling like I can't take a full breath and swallow, I can do both but I'm very conscious of my breathing and throat and it feels like I'm struggling to do a very natural function.. I jist feel very off..

I get very sensitive reactions to anything like this, cistus incanus and andrographis made me feel awful too..

Will ride it out and chalk that up to a big fat "no" and I'm. Definitely not risking trying again incase I have a full blown allergic reaction..

 

[Ronagrenade2020]

Anyone have any idea how to interpret the NK cell lab reports? I have absolutely no idea.
@Hip seen these before?

 

[Hip]

Anyone have any idea how to interpret the NK cell lab reports? I have absolutely no idea.
@Hip seen these before?

Have not seen such reports before, but your natural killer cell percentage of 28.1% is higher than the reference of < 10%. I don't know what that means.

Your NK CD69 appears within normal range.

 

[Ronagrenade2020]

T Cells across the board are all low!!!

Dr is going to run EBV DNA test and Early antigen and is open to treating with antivirals.

He didn't have all the answers but agreed that I quite clearly have se sort of viral inducted immunosuppression..

Wether that is just "typical post viral" or not I don't know..

Are there any drugs to improve this? Why does this happen during or after a virus?

 

[ScottTriGuy]

As a youngster I suffered terrible acne and was put on round after round of oxytetracycline for long periods and eventually put on 6 months of roaccutane.

@mariovitali

 

[Ronagrenade2020]

Failed experiment 2
3 days of activated charcoal (recommended dose on bottle x 2 a day)
2 days of Spirulina (2.5g per day)
5 liters of lemon water each day

Feel dehydrated
Headache
Diarrhea
Stomach pain
Stomach very grumbly like I have some sort of tummy bug
Tired
Just generally off and I don't feel like this is "good detox" symptoms, feels very much like contaminated Spirulina.. Maybe the charcoal is fine but I've been taking both so hard to tell.

Will ride it out, stop taking both supps and go back to the drawing board, waiting until pay day to invest in a few more liver detoxifying products.

Plan is to detox liver pathways before working on antifungal or antivirals but so far even a simple detox seems to be smashing me to bits.

Feeling a sense of frustration today, on paper everything should work but I seem to keep running into walls with quite mild interventions.

Something will work soon...

 

[Hopeful2021]

Thought I would start a thread documentingy experience from practically 0(bedbound) to some level of function.

I seem to have been struck down very hard, was previously a bodybuilder and trained 6 days a week intensely, workaholic living off of caffeine, dopamine and adrenaline and whilst I ate moderately healthy I did have a few issues such as much athletes foot and occasional ringworm suggesting some imbalance in the gut.

As a youngster I suffered terrible acne and was put on round after round of oxytetracycline for long periods and eventually put on 6 months of roaccutane. I had taken a moderate course of prednisone many years ago too which may have further exacerbated the gut imbalance.

I have been sick since March, originally I thought it was covid but having rethought the situation I think that due to surgery in February I had a dip in immune function and as a result I have reactivation of EBV.

I tested positive for EBV the following
EBV Vca IGM 81 *H (indicates current or recent infection)
EBV Vca IGG 135 H
EbV ebna 138 *H
Lyme - negative
Hep a/b/c- negative
Cmv IGM- negative
Cmv IGG- 0. 6(considered unreactive /negative)
Herpes 6 PCR - negative
HcV PCR- negative
HBv PCR-negative
HIV pcr negative

Planning to have HHV-6 and HSV 1/2 antibiodies tested as well as parovirus 19.

Current supplements
Lipo C - 2000mg/day
Lipo Glutathione - 500mg/day
Vit D 3000iu
Zinc 15mg
B12
B6 50mg
B5 550mg
Vit A 8000iu eod
Curcumin 2g
LAURICIDIN 3 scoops
Lysine 3grams
Vsl3 1 sachet
Sach boulardi 5 billion EOd (recently started and getting die off)
Chlorella 5grams
3 scoops greens
Seaweed caps x 2
Slippery elm 2g

Mito supps make me feel woslese so don't take them

Awaiting further tests on autoimmune markers, l,cytokines, lymphocytes and NK cell numbers and subgroups.

Previous results show raised complement and raised immunoglobulins (namely IGM and IGA)

Diet

Breakfast :
Scrambled eggs and smoked salmon with spinach, mushrooms, onions, peppers and tomatoes

Lunch :
Chicken bresst
1/2 pack of brown rice
Greens (broccoli /green beans or asparugus)

Dinner :
Same as lunch

Drinks :
Water with lemon

Goals :

Work on gut disbiosis, doing well with this at moment but still have fungal nail infection and foot but no ringworm, bloating or gas anymore. I tend to get bad due off and have had to stop anti candida supplements

Support immune system with relevant vitamins for optimal function

Support detox pathways and provide sufficient anti oxidant support.

Natural antiviral supplements to try and reduce ebv symptoms

Seek medical advice on using antiviral drugs and immune boosters

Trial Iv therapy such as vit c and ozone, possibly HBOT

Improve sleep

Rest and pace and spend day sitting or in bed until significant improvements allow gentle increase

Planning on deciding on next steps after next round of bloods and possibly trialling valciclovir and if tolerated maybe adding in inosine or some sort of immune stimulant(if t cells and nk cells come back on the light side)

@Ronagrenade2020

I noticed you mentioned HBOT. I did hyperbaric oxygen for several years and found it to be really helpful.

Recently though I've done oxygen training at home which mimics high altitude training. It's absolutely amazing. The theory is that the cells will do more things.... push more changes under bouts of lower oxygen. CO2 is great also for the body.
I rate this "High altitude" mimicking training as good or better than Hyperbariac Oxygen. Also it is a money saver and I can do it at home. Desaturating my blood of oxygen feels great. And just a matter of three or four breaths, my oxygen levels can be turned to 99 or 100. So once you were in that and see it repeated over and over, going down to a low oxygen level can set the mind at ease.

I've posted about it in this forum.

Did you end up having a few hyperbaric oxygen sessions? And if so, how are they? Were you in a hard shell or a soft shell chamber? How many minutes did you do? Also are you keto adapted? It's helpful to have ketones for the brain when doing any sort of high oxygen training.

It's really nice hearing about your success and how you got there.

 

[Ronagrenade2020]

Latest test results

T cells low across the board

Interestingly the cytokines were all normal, IL2 is upper quartile which may suggest a th1 response? I presume if I was th2 I would see a high IL10? @Hip @Learner1

Had an appointment with functional nutritionist and going to do the usual oats, stool tests ect.

 

[Ronagrenade2020]

Just logging another recent failed experiment with methylfolate and P5P.

Doses 800mcg methyl folate (200mcg x 4 doses per day)
P5p 50mg divided into 2 doses
Methyl B12 (2 doses)

Symptoms
Fast heart rate
Confusion
Some insomnia
Extreme fatigue
Heavy Ness felt in the limbs, especially around ankles (felt like weights on my shins)
Slight chills down spine
Feelings of being off and uneasy
Mood changes, bursts of highs around p5p dosing then feelings of sadness and low brain function around MTF doses.

Coincidentally I've recently stated vitamin A, NAC and Rala although I don't think they have caused any fatigue.. ALA typically improved my overall energy.

Started B2 riboflavin today, already feel a bit weird and that'd with only half a tab

I am still taking B5, b6(not p5p) and B12 as per my normal routine.

I have some underlying low cortisol issues and I wonder Wether the b Vits are wrecking my cortisol... Either way I really am not getting any benefit from b vitamins..

Coincidentally my step count has been higher in the last week at around 3500 which is the highest in months....infeel more fatigued but I feel better on my feet and walking around house..

At the moment I don't know what is good or bad for me, I really don't get all of the methylation stuff.. I'm. Doing it all right yet feeling 10x worse, it makes no sense!

Observations.
Seems to feel tired/worse with
Selenium
Q10
Methyfolate
B complex bits
Most cortisol lowering adaptogens

Will add to this as I go... Pqq may end up in the above as I either feel no benefit or its making me feel worse.

Some websites are recommending liver cleanses and detoxing pathway openers to get toxins out of the body.. I will try this as my next experiment and see how I feel..

My overall goal is to
1. Find a cellular energy booster that give me some quality of life
2. Get digestion,liver detox and gut working
3. Hit the body with anti parasite, anti bacteria and antifungal
4. Heal lining of gut and maintain detox pathways
5. Modulate immune system to increase th1 response and hopefully increase t cells