I've been here for 30 years.

[serg5]

Hi All

I've been here for 30 years. I've posted that I couldn't take it anymore. I left and came back many times.

I've researched every single protocol availalble and tried it - starting with submerging myself in cold baths when I was 16 years old to doing 10 day fasts and anything you can think of.

I don't know what the cause or the cure is. I do know what I've done that has NOT helped - but of course - only hasn't helped me.

I would like to provide an antidote to the ' do this you'll be cured' brigade - and at the same time - if I can provide an antidote to the 'nothing will work' - I've been there at every step on this spectrum.

I am much much better now - and yet - am now floored by a 3rd case of covid - so I'm not singingin in the clouds saying I've found the solution. I'm angry - re covid, re the lack of research - - but as you will be able to see in my posting history - I've been in the absolute shit - and do not want anyone else there

 

[serg5]

There IS stuff you can do to do feel better. It might not make you 100% but there is always something that can make you feel better a bit. And if there isn't there's always something that you can do to make yourself feel better about feeling in such hell.

 

[serg5]

I was always looking for something to make me feel better 100%. I wanted to find the cause and the cure and the solution. I did everything in my being to make that happen. And it never worked - and usually made it worse. And looking on this website - at the various protocols - the ones that claimed to figure out the tiny details of cellular function - different b vitamins - I squirted b vitamins onto beauty creams - I did 10 day fasts, saunas twice a day for months, cold baths, cold showers.......
We do not know what is going on in our bodies - trying to make our bodies bend to our wills just doesn't work.

 

[serg5]

I alternated between being 'in my mind' and 'in my body'-that was just STUPID. It's just not how it works - there isn't some magic cell in our bodies that doesn't respond to our minds. And that doesn't mean it's ALL IN YOUR MIND - it means - whatever is going on - is going on in BOTH. And that also doesn't mean that you can figure it out in your mind OR your body - it is both. We have a hellish condition - that takes over our whole life- our being -

and equally we can't wait for 'medicine' to solve it - because' medicine' in case you didn't notice - doesn't give a shit about you or me - 'medicine' is a corporate and political structure that serves THEM and not us - so it is up to us to figure it out

and that also doesn't mean it is this OR that - so some supplements might help x y or z but if you understand your mindbody system in the way that medicine has taught you - that you have a brain SEPARATE from your body - and that you will only be well when you deal with one or the other - then you have no chance. You need to reeducate yourself - your brain and body are

 

[serg5]

the same thing - and if your brain has gone nuts your mind will go nuts and vice versa. Just do what you can - it's a system - input into that system as best you can because as soon as you start fighting it and trying to impose your will on it - you will lose - because IT'S ALL YOU. If we get a dagnostic then fine - we can say f you to all the frs who have doubted us, but that won't help us until they figure out a 'cure' from that diagnostic. What we really want is to not hurt so much when the people we love can't see that diagnostic - and that's not anythying easy and I bet it won't be cured even when they do find out a diagnostic.

 

[serg5]

I'm screaming into the wind. I hate this fintg thing more than anything that I've ever hated and I didn't know that I had the capacity to hate something so much. And where does that leave me or you to be stuck there?

 

[serg5]

You can try what I did - alcohol, cigarettes - literally try and kill the pain and frustration. I thought I'd done that and yet with this bout of covid here I am again. So here it is

 

[serg5]

so now what? where do i go , where do you go from here?

 

[serg5]

I wish I had an answer - like do this and that. If the cns is the main player for you then the fear of being ill for the rest of your life might be constantly active. And to defeat that foe, you need to find a way to get in touch with your deepest fears and feelings and say 'f you' to them. And if you're accepting of all that, then there may be gremlins in your body that are at work that medicine doesn't know about - and then what? Fight them or 'accept'? I could never accept. could be why I've got the same thing over again with covid - I can not accept this shit! so then what - it's happening. so i can find a way to accept - or find a way for the world to figure out m.e and covid? The latter is the only rational solution. But how much suffering does it involve?

 

[serg5]

i right now cannot accept. yet I'm pretty sure that's pretty close to the source of my hell. If anyone knows how to accept I'd be very grateful

 

[serg5]

i've tried somatic - so feeling the anger, frustration feelings etc. I've done that for hours a day for the past few years. It's seemed the best approach - but often I haven't been able to get past that barrier of 'no' - no! I've tried all sorts of deep somatic approaches to this but still can't get there. I guess it's where the 'spiritual' comes in - to accept this is to give up everything - all hopes and dreams and sense of who we are.

 

[Atlas]

I've been here for 30 years.

Respect. That is a long time.

 

[Atlas]

i right now cannot accept. yet I'm pretty sure that's pretty close to the source of my hell. If anyone knows how to accept I'd be very grateful

What has helped me has been a combination of grief and hope.

..

A counselor from before I got sick used to say, some things need to be intentionally grieved, in order to be able to reach a place of acceptance. By grieved she meant in the same kind of way one would grieve a death. The death of what has been lost and what is perceived to be lost and what hurts.

Sometimes when the loss is so great it's difficult to even see hope at all. But grieving can help lower the soul to a point where it is no longer striving so much to have everything that could have been, but can just be OK with what is for now, and can look up again. That "looking up" hope for me is hope in God.

Acceptance is not about giving up, it's about coming to a place where no matter the situation, one can be OK with reality as it is, because at the place between grief and acceptance, hope is still there... It is just a hope at peace, no longer needing things to go a certain way to be OK.

 

[linusbert]

I've been here for 30 years

i was just trying to lookup your old forum posts, but cannot find any.
what do you mean? 30 years in this forum? but your account is only from 2012 with 28 messages so far.
do you have a 2nd account? or do you mean you have been sick for 30 years and following this forum silently?

 

[Rufous McKinney]

I am much much better now

That's something!

I"m not, but some symptoms lesson or shift or become more background,

Having run out of LDN as I wait for Godot/ a shipper I"m testing out....all these symptoms returned I had failed to appreciate were subdued by the LDN,......since its been several years since I ran out before.

so Having LDN is better than not having it.

 

[Wishful]

There IS stuff you can do to do feel better. It might not make you 100% but there is always something that can make you feel better a bit.

That's my philosophy too. Try lots of things, and if you're lucky, you'll find something that does work for you. I've gotten lucky at least 6 times so far, in 20+ years of this. If you're unlucky, you might try 100's of things that didn't work, but that doesn't mean that the next experiment won't treat some symptom.

I just realized that all 6 of the things I tried resulted in permanent (fingers crossed) cures of one or more symptoms. I'm not on any ongoing treatments at present. Still on the lookout for the next "feeling better than expected for some reason" event so I can identify a new treatment.

We do not know what is going on in our bodies

True. However, by reading about those "tiny details of cellular function", you might figure out something new to try, based on logic. Mostly it won't work, since there's so much involved in those tiny details that we don't understand, but sometimes it does work. When I was intolerant of certain fats, I read about the "tiny details" and thought that Carnitine was worth a try, and it worked, and after several months of that, I no longer needed it when eating fatty foods. Later, when I became intolerant of dietary fibre, the logical thing to try was probiotics, and I got lucky and one of the 14 strains in that capsule solved the problem. So, don't expect theories and logic to solve all your problems, since there's still too much unknown, but that approach might be more likely to lead to success than trying things purely at random.

Acceptance is not about giving up, it's about coming to a place where no matter the situation, one can be OK with reality as it is, because at the place between grief and acceptance, hope is still there...

There's a good philosophy too. I hadn't put my acceptance into such clarity, but I accept that I have this disease, but haven't given up hope yet.

 

[Wishful]

.all these symptoms returned I had failed to appreciate were subdued by the LDN,......since its been several years since I ran out before.

I recommend retesting all your ongoing treatments occasionally. Intentionally not take a dose (or several) to see whether it's still doing something useful. Maybe change the dosage to see if there's a different optimal dosage. If something isn't having a noticeable effect, you can avoid expense and hassle (I never found swallowing pills and capsules to be fun), possible side-effects, and it makes future treatment experiments simpler.

 

[Rufous McKinney]

That "looking up" hope for me is hope in God.

Not to suggest Im in any better place than the rest of us around here, at times I will apply a spiritual perspective to all this.

To escape the chair of victimhood.

 

[Rufous McKinney]

a rheumatologist suggested I increase my dose of LDN from 3.5 mgs to 4.5 mgs.

I did not do so. I started at 3.5.

I have notes from running out of LDN back in 2019. But where are those notes?

 

[Wishful]

a rheumatologist suggested I increase my dose of LDN from 3.5 mgs to 4.5 mgs.

I did not do so. I started at 3.5.

I started at the prescribed 4.5. I self-experimented with different dosages, from <2 to >6. High dosages were less effective, and there was a lower cutoff too. Sublingual required about 2/3 the dosage for the same effect. Sublingually, 2.0 mg had no effect, but 2.25 mg had full effect, so that's what I used for about a year, and then the muscle aches it was blocking stopped occurring.

Would the aches have been cured earlier if I'd taken higher dosages? Would they not have been cured if I'd taken higher dosages? No way to answer that now. I just took the dosage that seemed the best to me at that time. For that sort of drug, I think the minimal effective dosage is safest. For supplements, which the body should have a mechanism for maintaining optimum serum/tissue levels, dosage is probably less important.