Who has improved?

[Meruem]

I recovered from 4 to about 8-9.
Can walk 5 or 6 miles a day no payback but long termers will tell you it can return abruptly.
4 months is very short time.

Very happy for you.What was your CFS like,(onset,symptoms etc) and what things have you tried to recover or did your condition improved on its own?

 

[gregh286]

Very happy for you.What was your CFS like,(onset,symptoms etc) and what things have you tried to recover or did your condition improved on its own?

Check my posts in other threads.its all there.
Immune modulation and high doses aminos.
Onset was slow triggered by alcohol misuse.
Everyone trigger differs but outcome same. Metabolic shutdown from cell danger response. protection mechanism. Cell wall stiffen to avoid damage from the danger and loss of good endothelial function, bad circulation bringing POTS etc.

Read up on Nauvaux and Newton.
https://www.hindawi.com/journals/jar/2016/2497348/

 

[gregh286]

Very happy for you.What was your CFS like,(onset,symptoms etc) and what things have you tried to recover or did your condition improved on its own?

My experience in order of most importance, to address immune modulation, help to instill th1/th2 balance
1. Colostrum powder (help gut wall too)
2. SBO Probiotics
3. Vit D

What helped my energy most:
1. AAKG
2. OAKG
3. GlutamineKG
4. TMG

Most important takes time because even when even when you remove the trigger take months for body to lower the stress danger response cos the memory immune cells have long lives.

 

[BFitz89]

Hi Meruem

I too got ill 4 months ago. I've now recovered (I think).

My illness started suddenly with no obvious cause. It began with dizziness, then came fatigue and a general feeling of being unwell, like the flu. Along with a myriad of random symptoms and a feeling of being poisoned and electrocuted at the same time! At my worst I was stuck on the sofa for 3 weeks, unable to do anything and feeling ghastly. I had two months off work. My husband and daughters took care of me.

I had no treatment, and didn't eat particularly well (had no appetite) or take any supplements apart from a multi vitamin. The illness just seemed to run its course. I'm in the UK, where there's no treatment available.

After 3 months I began to feel better, and after a couple more weeks I was feeling fully recovered. We went on holiday and there I was very active. I returned to work. I was 100% for about 2 weeks. The me cfs already seemed like a distant memory! Then i caught a sore throat from my daughter, and felt unwell again, but not nearly as bad as before. I rested for about 10 days and right now I feel 90% well.

Now i am very conscious i have to be careful what i do, even if i feel completely well. Only (if and) when I've been well again for a few months will I consider it behind me.

You certainly can get better. In fact my GP told me that most people with what he called post viral fatigue do. I believed him until I did some Googling! Do you feel you're getting better, worse, the same? My symptoms were so erratic it took some time to see I'd turned the corner. All the very best to you.

Sounds like you had a severe run in with glandular fever.

I had an easy go with mono and believed I was recovered. I never stopped working, didn't get enough sleep and only took two weeks off from hockey and the gym. Three months after 'recovering' I got hit with this. I'd recommend resting for a 6 months or so after feeling 100% again.

I never rested. Not even when I had glandular. I just pushed through it. Terrible idea.

 

[BFitz89]

Check my posts in other threads.its all there.
Immune modulation and high doses aminos.
Onset was slow triggered by alcohol misuse.
Everyone trigger differs but outcome same. Metabolic shutdown from cell danger response. protection mechanism. Cell wall stiffen to avoid damage from the danger and loss of good endothelial function, bad circulation bringing POTS etc.

Read up on Nauvaux and Newton.
https://www.hindawi.com/journals/jar/2016/2497348/

Could you expand on your theory of alcohol misuse? My foray into this BS started after taking an antibiotic course and getting blackout drunk. I had a three day hangover that I never fully recovered from.

I noticed since about the age of 24 (28 now) my hangovers became more and more severe where as a couple before bed would make me feel like crud for a few hours in the morning and a good night of drinking (6-10) drinks a full day to day and a half hangover.

 

[gregh286]

Could you expand on your theory of alcohol misuse? My foray into this BS started after taking an antibiotic course and getting blackout drunk. I had a three day hangover that I never fully recovered from.

I noticed since about the age of 24 (28 now) my hangovers became more and more severe where as a couple before bed would make me feel like crud for a few hours in the morning and a good night of drinking (6-10) drinks a full day to day and a half hangover.

Since around age 15 i was drunk 2 or 3 times a week. Normal in n.ireland tbh.
Around 19 i was getting facial angioedema regularly. Monday was high incidence of swellings. Alcohol compromised gut wall while binging over weekend....then when i eat sunday or monday face blew up.
I only got seriuos cfs 5 years ago but looking back i had fatigue attacks last 20 years....preceded by alcohol. Eventually body i think got stuck in danger mode and permanent cfs ensued.
I did leaky gut test and stuff and i was in top 2% population of leakiness. Whether its mumbo jumbo or not i dont know. Nonetheless you cant argue against angioedema....its visible.
Now my angioedema is almost gone and i have improved at same time my cfs.
Alcohol very damaging to gut wall intregity. On top of that if you are bombarding mito 3 or 4 times a week with poison cant blame.them for shutting down to protect.

Strangely unlike peanut allergy people and stuff that react to foods instantly.....i would swell 4 to 6 hours post food. This indicates to me problem is in lower intestines not upper GI tract.

A good makers diet with glutamine...probiotics and colostrum will heal the gut.

 

[BFitz89]

Since around age 15 i was drunk 2 or 3 times a week. Normal in n.ireland tbh.
Around 19 i was getting facial angioedema regularly. Monday was high incidence of swellings. Alcohol compromised gut wall while binging over weekend....then when i eat sunday or monday face blew up.
I only got seriuos cfs 5 years ago but looking back i had fatigue attacks last 20 years....preceded by alcohol. Eventually body i think got stuck in danger mode and permanent cfs ensued.
I did leaky gut test and stuff and i was in top 2% population of leakiness. Whether its mumbo jumbo or not i dont know. Nonetheless you cant argue against angioedema....its visible.
Now my angioedema is almost gone and i have improved at same time my cfs.
Alcohol very damaging to gut wall intregity. On top of that if you are bombarding mito 3 or 4 times a week with poison cant blame.them for shutting down to protect.

Strangely unlike peanut allergy people and stuff that react to foods instantly.....i would swell 4 to 6 hours post food. This indicates to me problem is in lower intestines not upper GI tract.

A good makers diet with glutamine...probiotics and colostrum will heal the gut.

Dude that sounds so relatable to me. I drank while ill with mono (occasionally heavily) and was staying out late at night. Pretty sure my mito got damaged beyond repair and my antibiotic course finished them off.

My gut is similar to yours, too.

 

[*GG*]

Sounds like you had a severe run in with glandular fever.

I had an easy go with mono and believed I was recovered. I never stopped working, didn't get enough sleep and only took two weeks off from hockey and the gym. Three months after 'recovering' I got hit with this. I'd recommend resting for a 6 months or so after feeling 100% again.

I never rested. Not even when I had glandular. I just pushed through it. Terrible idea.

I had 2 weeks off from work to recover from the Mono, but did get bored and went for a bike ride at some point, like I had been doing for the previous 15 years, was that detrimental? Perhaps, but would I still have this illness, don't think that can be answered with our current knowledge of this illness via studies.

I have never been "healthy" like I was before Mono, exercise takes a lot out of me (but I still do it), not like before!

GG

 

[Forbin]

I had 2 weeks off from work to recover from the Mono, but did get bored and went for a bike ride at some point, like I had been doing for the previous 15 years, was that detrimental? Perhaps, but would I still have this illness, don't think that can be answered with our current knowledge of this illness via studies.GG

Similar story here. Got a really nasty flu with a terrible sore throat, but seemed fully recovered about 10 days later. I resumed my normal schedule, which included strenuous biking for exercise. When I subsequently came down with ME, my blood test showed that I was probably still fighting that earlier infection from three weeks earlier, even though I had felt recovered.

 

[ahmo]

8 years into my illness, having tried many things, I finally made gains by going on GAPS diet. From there, I used Dietrich Klinghardt's suggestions for detox, which took 3 years, and fixed my methylation. I also stopped eating histamine creating foods and sulfurous foods. After 5 years of effort, I no longer have the many noxious symptoms I'd been plagued with. But the basic ME energy deficit remains. And I've learned to be very careful about the amount I do.

 

[tudiemoore]

I am in the Moderate category now
I got there by pacing, supplements, just limiting everything. But an improvement!

This past spring I had a series of antibiotic IV infusions which brought me up to more stamina but same issues--fatigue
mostly.

I can only explain it this way--I can go on longer without getting to the point of "must lie down", I can be fairly refreshed by resting, I usually feel well enough to start thinking of things I want to try soon, some of which are/might be doable in the near future. Brain fog is rampant but I am experiencing a great deal of family stress.
Better but cautious=

 

[HowToEscape?]

I think a lot of us have improved and many of the same people have gone back. SOME have made lasting recoverys; for example Howard Bloom, (the author, not Harold Bloom, adifferent author) recovered after over 10 years of being sick. This seems to be extremely rare though.

I was so sure I would be one of those it just bounced back....
Nope.

 

[blueberry]

I believed I had recovered 100%, then relapsed after 12 years. But, not wanting to discourage you, I feel that I might have avoided this relapse if I had known a bit more about the condition. Mainly, if I had been able to accept that ME is most likely a life-long condition, I would have done a few things differently in the last couple of years. I would not have gone full time at work and I would not have then tried to do a demanding course on top of that. I would not have "pushed through" some very nasty flu-type viruses, continuing to work when I was ill. But because I considered myself 100% cured, and with no proper ME doctors in this country (UK) to consult (and back then far fewer resources online), I remained in willful/blissful ignorance. I am slowly improving at present, working 8 hours a week and resting most of the other time. I'm being very picky where I spend what little energy I have. I feel desperate some of the time, that this illness has returned, but I'm also learning some useful things from communities like this. I realise that I am very lucky to have had those 12 years of remission, and if I'm lucky enough to get over this relapse, I will never take my health for granted again.

 

[dannybex]

Similar story here. Got a really nasty flu with a terrible sore throat, but seemed fully recovered about 10 days later. I resumed my normal schedule, which included strenuous biking for exercise. When I subsequently came down with ME, my blood test showed that I was probably still fighting that earlier infection from three weeks earlier, even though I had felt recovered.

There are studies showing strenuous exercise impairs gut function -- and also immune function -- which I think may explain why marathoners and other top athletes can 'suddenly' become very ill. Of course it may not be that sudden though in hindsight...

Exercise and immunity:

https://www.ncbi.nlm.nih.gov/pubmed/12696983

Exercise and gut health:

https://www.sciencedaily.com/releases/2017/06/170607085452.htm

 

[ChrisD]

I've seen a very slight improvement but I thought it was worth noting just for the positivity of this forum.

I got really sick in DEC 2015 with a flu which evolved into Reactive Arthritis, which morphed into Fibromyalgia and 'CFS', over the course of 2016 I mainly suffered with this CFS/Fibro combo but was still able to go to work (just), the whole year was a nightmare and was very stressful, it wore me down and in DEC 2016 I crashed hard and one day found myself bedbound. For December/Jan 2017 I was bedbound/housebound but I quickly started trying various protocols, an acquaintance who had already endured chronic illness pointed me towards Bravo and Rerum (Gcmaf) so I splashed out and started using those, that combo got me a lot better very quickly, to the point that I could go out and walk 10,000 steps (albeit with discomfort and not that I had realised yet but I was still wearing myself down). I stopped using Rerum because it is ridiculously expensive and I couldn't afford it and then I took a dip again, but Bravo yogurt or capsules I have stuck with and they keep me plodding along and maybe slightly improving, if I stop taking them then I see a dramatic worsening of sleep and energy and more pain etc.

2017 has been a year of trying many different protocols; Detoxes, cleansing, purging, Gut stuff, High dose vitamins, stricter diets, finally ultimately lowering any kind of stress, learning to pace. It has been tremendously hard work and I don't feel I have got equal gains to the amount of effort, time and money - I've hit a bit of plateau now really. But what I would say is that I don't really have Fibromyalgia any more, my joints have healed or are healing, my muscles are strengthening (especially over the summer). My main goal is to improve my energy levels and stamina and to lose this dreaded PEM - those are the aims that I feel have plateaued.

It might sound crazy to some people that I can say I have ME and was doing 10,000 steps just months after the onset of my illness but this was not exactly a blessing as it kind of tricked my mind into believing that it was an acceptable level of activity for my body even when I stopped using Rerum. In this time I may have done significant damage to my Mitochondria. This step total also quickly dropped over the next few months after Rerum from 10k down to 6k and was still and uncomfortable and exhausting level that left me with all kinds of new symptoms constantly occuring. It's taken some 9 months to realise the pattern of pushing myself on one day a week and paying for it on the six other days. Now, I'm getting closer to finding some equilibrium, in walking around 2,000 steps (if I have PEM) and 5,000 steps in two lots of 2500 on my better days. I have to keep these levels up, if I don't go out and walk and move then I get much worse, if I go over my limit then I also get worse. So I am just trying to keep within this zone, supplementing with Mito supps, probiotics, high dose vitamin C and Niacin and hoping something sticks. Now I find my current symptoms much more manageable and to be expected with the level of activity I undertake, so nothing causes significant panic or worry and I know I can overcome or heal anything quite quickly (if that makes sense).

I am now just searching for that thing that will boost my energy levels back to what they were pre-illness, but I feel that I have made a 20% improvement from the worst point of my illness (if that was rated as 0 and 100 is full health)
Three weeks ago I started a Ketogenic diet, the first week wasn't great as expected but in the second week I was able to walk 4-5,000 steps on back to back days without significant PEM, so this was really promising.

 

[FinRinTin]

It started in August 2013 with EBV.
As I was "fortunately" out of work I could rest and inform myself in the following months about why my health didn't improve.
That's probably the reason I rather quickly ( after 3 months) started with some sort of supplements.

Meanwhile I've tried a lot of treatments like different antibiotics, GCMAf, multiple supplements, Immune-Modulators( IVIG, LDN), probiotics and herbs.

As I've found no doctor in germany that took me seriously I'm since autumn 2014 a patient of Professor De Meirleir in Brussel.
He made a lot of tests but as of today he found no trigger of my illness: he's convinced that I've got a lot of brain inflammation and the tests show that many markers in my body are a mess.

In the same year I returned to work full-time in IT and I barely cope to do this.
No social life.
After work and on weekends I lie on the couch and consume media.
Without the help of my wife it would be a rather difficult life.

The gravest symptoms are a very low level of stress tolerance which often triggers anxiety, difficulty sleeping, brain fog, light/sound/temperature-sensivity and PEM.

Is there anything that has helped?

First of all getting informed about this disease.
I was never interested in medicine but in the last years - while reading in this forums- I've gained a fascination for the subject.
Most importantly this knowledge gives me a feeling of some sort of influence about my wellbeing.

For managing my symptoms most helpful are NAC, Polygum Cuspidatum( for reducing my brain inflammation and the following anxiety) and prescription-free sleep aids.

As I'm trying LDN and IVIG just for some weeks it's too early to deliver a judgement.

My biggest disappointment was GCMAF. In hindsight imho it was only a scam.

 

[ChrisD]

My biggest disappointment was GCMAF. In hindsight imho it was only a scam.

I did consider the fact that Rerum+Bravo (Gcmaf) could have just been an expensive placebo, but my evaluation is that the step up I took was so large that it could not possibly be just through willpower. I went from an ME/Fibro/MCS state (I forgot to mention MCS before, couldn't hold my phone or mushrooms etc. without a reaction!) to feeling really strengthened and able to go out and do those 6-10k step walks with reduced PEM - it was a crazy improvement.

And as I say, Bravo definitely has me in a better immune state, if I forget to use it for a few days then I suddenly feel wobbly and uncoordinated, nauseous and heavy and feel that I am just going backwards again, rather than travelling on this steady plane with a slight improvement trajectory...

Perhaps some people respond to GcMaf and others don't?