I seem to be in remission (ME/CFS moderate since 2007)

[gm286]

I will try to be as concise as possible explaining everything. I am on:

- Cusack protocol (dx CCI and fibromyalgia ; muscle fatigue ; pain and inflammation of all sorts in connective tissue).
- Low dose prednisone (will remain indefinitely on this ; was at 10mg weaning to 5mg)
- LDN (standard ME/CFS treatment)
- Lexapro 15mg (Lab: low gut serotonin)
- Abilify 1ml (Lab: low gut dopamine ; 0.5ml on weekends).
- Liposomal vitamin C -- has mopped up the remainder of the PEM.

I really dislike posting stuff like this because I don't want to get overenthusiastic and I've literally had my entire twenties robbed from me due to this disease. I have had to be very stubborn vis-a-vis family, doctors, friends, and life partner who all at one point or another did not understand.

The gist to get straight to it: I have had two days and two nights of uninterrupted, pure, positive physical and mental energy. I go to work at 6:45AM - 16:45PM most days. Last two nights, I have gone to sleep at 12:30AM and both times woke up at 6AM with absolutely NO PEM, flu-like fatigue, brain fog, or exhaustion. I woke up feeling restored, like I did not any longer need to sleep at all.

This is a big deal because it just simply has not occurred in what seems like fourteen years, essentially the full amount of time I have been affected by ME/CFS. Obviously, I have probably had good mornings in that time, but this feels like a whole new threshold of achievement given the circumstances and energy demands from work.

The tipping point was the liposomal C which I seem to be absorbing (a contrario I know that regular C would not have had this effect). I am not sure if it is because I am stacking it on top of other medications and supplements or because I have simply never tried it. Maybe a bit of both?

I am also certain that everything else I am taking has been useful. The Cusack protocol has effectively cut down all sorts of muscle and joint problems for me. Abilify has been vital for psychic and mental energy. To say nothing of the prednisone, which single-handedly pulled me out of the worst of it last year -- it was the first medication I started and I've only gotten better on it.

I was still getting PEM and brain-ish, flu-like symptoms up until I added the liposomal C. I don't know how or why, but it is working shockingly well right now. I will revisit this post in the future to modify anything which does not reflect my progress long term.

Suffice it to say, my energy has been unrelenting. If I continue this way, there will no longer be any need to pace, but time will tell. I still have terrible eye floaters, continue to crack my back (though nothing like before, I would wake up stiff as if I had slept in a freezer), and need to readjust my cervical spine from time to time. But there is drastic progress here.

 

[pamojja]

The tipping point was the liposomal C which I seem to be absorbing (a contrario I know that regular C would not have had this effect)

Of course we are all different. Only last year a study came out by Levy which meassured for the first time the difference in absorbtion of liposomal vitamin C compared to sodium ascorbate (the ascorbate form usually found in liposomal, and actually a weaker antioxidant than regular ascorbic acid powder). It found serum levels increased equally, but increased intracellular ascorbate to 150% area under the curve compared to ascorbate. So in the end only 1/3 more absorbed.

Therefore it would be interesting to know how much liposomal you're taking a day, compared to regular you tried, which didn't had the same effect?

 

[lenora]

I will try to be as concise as possible explaining everything. I am on:

- Cusack protocol (dx CCI and fibromyalgia ; muscle fatigue ; pain and inflammation of all sorts in connective tissue).
- Low dose prednisone (will remain indefinitely on this ; was at 10mg weaning to 5mg)
- LDN (standard ME/CFS treatment)
- Lexapro 15mg (Lab: low gut serotonin)
- Abilify 1ml (Lab: low gut dopamine ; 0.5ml on weekends).
- Liposomal vitamin C -- has mopped up the remainder of the PEM.

I really dislike posting stuff like this because I don't want to get overenthusiastic and I've literally had my entire twenties robbed from me due to this disease. I have had to be very stubborn vis-a-vis family, doctors, friends, and life partner who all at one point or another did not understand.

The gist to get straight to it: I have had two days and two nights of uninterrupted, pure, positive physical and mental energy. I go to work at 6:45AM - 16:45PM most days. Last two nights, I have gone to sleep at 12:30AM and both times woke up at 6AM with absolutely NO PEM, flu-like fatigue, brain fog, or exhaustion. I woke up feeling restored, like I did not any longer need to sleep at all.

This is a big deal because it just simply has not occurred in what seems like fourteen years, essentially the full amount of time I have been affected by ME/CFS. Obviously, I have probably had good mornings in that time, but this feels like a whole new threshold of achievement given the circumstances and energy demands from work.

The tipping point was the liposomal C which I seem to be absorbing (a contrario I know that regular C would not have had this effect). I am not sure if it is because I am stacking it on top of other medications and supplements or because I have simply never tried it. Maybe a bit of both?

I am also certain that everything else I am taking has been useful. The Cusack protocol has effectively cut down all sorts of muscle and joint problems for me. Abilify has been vital for psychic and mental energy. To say nothing of the prednisone, which single-handedly pulled me out of the worst of it last year -- it was the first medication I started and I've only gotten better on it.

I was still getting PEM and brain-ish, flu-like symptoms up until I added the liposomal C. I don't know how or why, but it is working shockingly well right now. I will revisit this post in the future to modify anything which does not reflect my progress long term.

Suffice it to say, my energy has been unrelenting. If I continue this way, there will no longer be any need to pace, but time will tell. I still have terrible eye floaters, continue to crack my back (though nothing like before, I would wake up stiff as if I had slept in a freezer), and need to readjust my cervical spine from time to time. But there is drastic progress here.

This is very good news for you, indeed. You have my heartiest wishes for remission for a long, long time...if not the rest of your life. Thanks for putting in the info about aids & meds that worked. Did you go to a clinic? Just wondering. Wishing you all the best....Yours, Lenora.

 

[gm286]

Of course we are all different. Only last year a study came out by Levy which meassured for the first time the difference in absorbtion of liposomal vitamin C compared to sodium ascorbate (the ascorbate form usually found in liposomal, and actually a weaker antioxidant than regular ascorbic acid powder). It found serum levels increased equally, but increased intracellular ascorbate to 150% area under the curve compared to ascorbate. So in the end only 1/3 more absorbed.

Therefore it would be interesting to know how much liposomal you're taking a day, compared to regular you tried, which didn't had the same effect?

What I’m going to say may be absolutely incoherent or illogical, but I know that I have low
endogenous pancreatic enzymes (elastase is below 179) and require them as a supplement. I have not started taking them as my doctor wants to see me again before we make a decision. So perhaps yes, it is just that we are different and I respond to liposomal C better. It may also be that all the medications I’m stacking are helping make a difference. I’m convinced though that I have classic malabsorption issues. I’m taking 3g at most. I’ve taken higher than that as sodium ascorbate powder before and have not felt the same effects.

 

[gm286]

This is very good news for you, indeed. You have my heartiest wishes for remission for a long, long time...if not the rest of your life. Thanks for putting in the info about aids & meds that worked. Did you go to a clinic? Just wondering. Wishing you all the best....Yours, Lenora.

Thanks!! I’m beside myself and if this lasts, it will mark my ‘inner state’ for a while because it was a lot of work and years of effort (and even more years of surviving) to get to this point. God knows. Didn’t do a clinic (wish I did). Just kept rotating doctors until there was progress. Oh, and Google is everything. Google reviews every day, all day.

 

[pamojja]

I’m taking 3g at most. I’ve taken higher than that as sodium ascorbate powder before and have not felt the same effects.

Compared to how much liposomal?

 

[godlovesatrier]

What brand liposamal do you take? Sadly I never noticed a thing when I took it years back. But branding can be everything.

Thanks for sharing your story so far.

 

[gm286]

Compared to how much liposomal?

Today must have been my max, at about 3.5g liposomal throughout the day.

 

[gm286]

What brand liposamal do you take? Sadly I never noticed a thing when I took it years back. But branding can be everything.

Thanks for sharing your story so far.

It is... quite simply a random, sort of generic French brand. Will switch to the Dr Mercola liposomal C on iherb since I order everything on there. Let me know if you’d like a pic caption of the other side of the bottle.

 

[godlovesatrier]

Thank you I'm doing about 3 grams of magnesium ascorbate a day currently. Which is something like 2 grams of vitamin c per day. I can tolerate this but I haven't got the foggiest how bioavailable it is. At any rate I can certainly feel it working for an hour or so but the effect doesn't last long.

Might give the liposamal a go again at some point.

Thank you.

 

[pamojja]

It found serum levels increased equally, but increased intracellular ascorbate to 150% area under the curve compared to ascorbate. So in the end only 1/3 more absorbed.

I’m taking 3g at most. I’ve taken higher than that as sodium ascorbate powder before and have not felt the same effects.

Compared to how much liposomal?

Today must have been my max, at about 3.5g liposomal throughout the day.

So your experienced better results with 3.5g liposomal compared to the about the same amount of sodium ascorbate. Which doesn't contradict Levy's study which found liposomal 1/3 more absorbed.

The thing I'm so interested in this detail is, because I experienced amazing health-benefits from about 25 g/d of ascorbic acid powder during the last 12 year. And if liposomal is really only 1/3 effective, I still would have to use aprox. 16 gram liposomal for the same effects compared to ascorbic acid. Which I simply never could afford.

There could be still different mechanism involved, and we wont know if really higher amounts of ascorbic acid actually could superseed the effects of liposomal in your case too, since you didn't try more.

 

[Judee]

I'm wondering if it is the mixture of everything with the Amblify. Just because I think many people here have used the others before w/o the same type of remission. I guess time will tell. Hope everything keeps working for you though. Congratulations!!!!

 

[Martial]

Glad to hear of your recovery! Couple things stood out to me. The connective tissue pain and inflammation along with other symptoms is very suspect of lyme and co infections, and CCI is something that can cause the full array of ME/CFS symptoms. If you ever become sick or relapse again there is good chance you could come out of it again if these two things could have been underlying drivers of your illness and you treated for it. Just something to have in your back pocket in case you ever felt the need to look into it!

 

[Hip]

The gist to get straight to it: I have had two days and two nights of uninterrupted, pure, positive physical and mental energy. I go to work at 6:45AM - 16:45PM most days. Last two nights, I have gone to sleep at 12:30AM and both times woke up at 6AM with absolutely NO PEM, flu-like fatigue, brain fog, or exhaustion. I woke up feeling restored, like I did not any longer need to sleep at all.

Sounds interesting. But has this remission from your ME/CFS just been for two days so far?

How long have you been taking Abilify, and also LDN? These are treatments which if they work well for you, can result in major improvements (ie, can move you up at least one level on ME/CFS scale of very severe, severe, moderate, mild, remission).



Interesting about the liposomal vitamin C. I did not know that you could buy this.

People have been making liposomal vitamin C at home using recipes like this one (you need a food blender, ascorbic acid powder, lecithin granules and some alcohol).

I read that liposomal vitamin C that you make lasts only 3 or 4 days at room temperature (but lasts much longer in fridge).

So if manufacturers are selling non-refrigerated liposomal vitamin C supplements, I guess they must have found a way to stabilize the liposomes for longer periods. Either that, or these liposomal supplement products may be poor quality by the time they reach you, as many of the liposomes may have degraded.

I keep meaning to try to make my own liposomal vitamin C. I bought all the ingredients, I just have to get down to making it.

 

[YippeeKi YOW !!]

So if manufacturers are selling non-refrigerated liposomal vitamin C supplements, I guess they must have found a way to stabilize the liposomes for longer periods. Either that, or these liposomal supplement products may be poor quality by the time they reach you, as many of the liposomes may have degraded.

.....

That represents my understanding of Lipsomal C, too .... and also the reason I was resistant to purchasing any and why I didn't try to martial the energy to produce my own, tho your recipe looks a lot easier than the one I was briefly considering. I might give it a shot .....

 

[gm286]

@Hip

So, the thing I really appreciate, is that the medications I am on have been giving me 'return on investment' for a while now. I have already described the magic of prednisone and what it has done for my physical energy, no need to reiterate here.

For Lexapro, it's been about 6 months. I am now on a steady dose of 15mg which I take at night with LDN before sleeping. The first thing I noticed is that this SSRI was allowing me to wake up slightly earlier for work with slightly more vital energy.

For LDN, it's been exactly 4 months. I increased gradually till I hit 4.5mg. The LDN is the medication whose explicit benefits I can measure the least, but I simply trust in it.

For Abilify, it's been one month. I have managed to increase to 2ml per day, but I am still testing around between 1ml and 2ml and see if I can tolerate the upper limit without side effects on sleep, migraine, etc. The benefits have been noticeable. But it is not easy for me to describe how or why I feel better. I feel like it has allowed me to work with a clearer mind, to be less nervous, and it has had an effect on mental energy.

Everything is helping. It feels like stacking these medications was the right approach for me.

All things taken into account, the stacking has permitted me to vastly reduce PEM, as if these medications have allowed me to replenish and renew much, much faster. I am not feeling exhaustion at work. Keep in mind there are days at work where I am left to manage about 15 handicapped senior residents with scant amount of help from co-workers because of administrative budget cuts.

One incredible effect of Abilify on PEM, for instance, is the following: I have been able to instantly cut down from 10mg to 5mg prednisone while barely feeling the negative consequences on my adrenals. I had attempted this reduction at the start of the year (no Abilify then) and it was a terrible experience ; my body could not cope with the reduction. This did not happen this time, and the only variable that had changed was being on Abilify.

 

[Hip]

One incredible effect of Abilify on PEM, for instance, is the following: I have been able to instantly cut down from 10mg to 5mg prednisone while barely feeling the negative consequences on my adrenals. I had attempted this reduction at the start of the year (no Abilify then) and it was a terrible experience ; my body could not cope with the reduction. This did not happen this time, and the only variable that had changed was being on Abilify.

That's interesting, because low-dose Abilify acts on the dopamine system, and Andrew Miller has a theory about ME/CFS based on low dopamine. Dr Miller thinks that that low dopamine allows inflammation to get out of hand, whereas if you increase the dopamine response, that reduces the inflammation.

 

[Judee]

@gm286, have you seen this page of this thread just in case the Abilify and these other things stop working for you: https://forums.phoenixrising.me/threads/abilify-tolerance.82726/page-9#post-2341994

 

[gm286]

Hey @Judee indeed I have. So far it continues to work for me. 2ml is way too strong, as it consistently gets me woken up at 4am at night which is just not good. So I did end up sticking to 1.5ml.

If in the future I develop a tolerance, I’ll get on amisulpride as well.

 

[Judee]

I still have terrible eye floaters

I know you posted after this but I wanted to tell you when I start high dose Vitamin D, and K2 (later added Vitamin C which is needed with such high doses of D) my floaters went away. For several months I had one that was like a big black spider (like one made out of thick black yarn) hanging down into my vision. I started the D after going to a rheumatologist who said I had Fibromyalgia and wanted me on some other meds but he had also tested my D and it was low.

The eye floater went away after I started the D (I wasn't expecting that) and that was the only thing I remember changing around that time. I didn't start on the medicine he prescribed. It was known to have some really bad side effects and also difficult to get off of.

I just take the D about once every 7-10 days...sometimes not even that often as I frequently forget.

Hope with the more recent changes you are able to get back on your remission protocol.