Have you ever had remission from CFS?

[Hip]

Have you ever had remission from CFS (even if only for a few months), and if so, do you have any idea of what you might have done to precipitate this remission?

Change of medications? New herbs? Change of diet (even if slight)? Change of daily habits? Change of house or location? Getting more sunlight (or less)? Doing more (or less) physical or mental work/activity? Starting or restarting something like meditation, yoga or some spiritual practice? Relaxation techniques?

It would be interesting to hear about remissions or even just periods when you generally felt better for a few months or so and what things (no matter how obscure) you think may have contributed to the improvement.

 

[rwac]

I was feeling pretty good for a month or so. I think it was the sunlight and warm weather. Then I decided to take a trip to Texas to meet some old buddies, and naturally I overexerted myself, and fell sick again.

 

[ukxmrv]

Never a remission although I've tried new location, holidays, new home, drugs, supplements, exercise, mind therapies, meditation and all the obvious things.

Have had small improvements on some things but never a remission.

Better in winter so a cold climate could help me if I could stop the viral infections that I get when I try.

 

[SOC]

Have you ever had remission from CFS (even if only for a few months), and if so, do you have any idea of what you might have done to precipitate this remission?

Change of medications? New herbs? Change of diet (even if slight)? Change of daily habits? Change of house or location? Getting more sunlight (or less)? Doing more (or less) physical or mental work/activity? Starting or restarting something like meditation, yoga or some spiritual practice? Relaxation techniques?

It would be interesting to hear about remissions or even just periods when you generally felt better for a few months or so and what things (no matter how obscure) you think may have contributed to the improvement.

We have 2 PWCs in my family. Remissions (in the younger patient) and periods of much reduced symptoms (in the older patient) occurred in the first few years of the illness, but that's not much help to you now.

I've had significant improvements from the Pall Protocol, which probably also works as a methylation protocol for many people. I wouldn't call it a true remission, though. My daughter (who was largely well between flares until just over 2 years ago) could pull out of flares more quickly using the Pall Protocol. Once she was in constant flare (so to speak), even the Pall Protocol could not get her into remission again.

Now, after 15 months on Valcyte for an active hhv6 infection, she is nearly in remission again. I'm also much better (but far from well) after 15 months on Valcyte (also for active hhv-6 infection).

I don't know if that's any help, but it's the best I have to offer.

 

[justy]

Hi Hip, i have had a long remission for about 10 years to near normal functioning. I still didnt have the stamina or ability to exercise really hard for long but i could swim and go for long walks and work part time etc. I didnt feel ill all the time either and didnt have lots of pain. i had two more children during the remission and coped with that fine. I do sometimes wonder if the homones had something to do with me feeling better as the first time i got ill was 17 years ago when i stopped breastfeeding my second child. During the ten year remission i was pregnant or breasfeeding for 7 of those years. i relapsed really badly 3 years ago when i caught measles.

During the remission i still knew that something wasnt right though and would often get severe fatigue or what i like to call the feeling like your going to die feeling, but i would recover from it quite quickly.

Leading up to the remission i was not as ill as i am this time and i basically did a strict diet no alcohol etc and slept 16 hours a day for 2 years. when i was awake i did minimum housework etc and just looked after my kids. i didnt work and had accupuncture and aromatherapy massage for 2 years every week, i also had a lot of osteopathy. i dont really know how i got better, i also did yoga but im too ill to do that this time.

 

[Marg]

yes, I did and it lasted almost 8 years sometimes not 100 % but no one feels good all the time that I know of. I have not idea what did it, I did so many things, name it and I did it except for ampligen. I just slowly started feeling better. The symproms started creeping back three years ago and I ignored them and crashed two years ago... a stomach flu may have triggered it, I don't know.

I am on Imunovir now and learned I have POTS and that is under control. I went to Dr. Klimas last summer so I can thank her for the improvement. No on ever looked at my immune system like that.

 

[Jenny]

See this thread:

http://forums.phoenixrising.me/showthread.php?9528-Have-you-had-a-remission&highlight=remission

 

[Hip]

See this thread:

http://forums.phoenixrising.me/showthread.php?9528-Have-you-had-a-remission&highlight=remission

Thanks Jenny, I did not realize there was another thread going on this same subject.

 

[Hip]

Hi Hip, i have had a long remission for about 10 years to near normal functioning. I still didnt have the stamina or ability to exercise really hard for long but i could swim and go for long walks and work part time etc. I didnt feel ill all the time either and didnt have lots of pain. i had two more children during the remission and coped with that fine. I do sometimes wonder if the homones had something to do with me feeling better as the first time i got ill was 17 years ago when i stopped breastfeeding my second child. During the ten year remission i was pregnant or breasfeeding for 7 of those years. i relapsed really badly 3 years ago when i caught measles.

During the remission i still knew that something wasnt right though and would often get severe fatigue or what i like to call the feeling like your going to die feeling, but i would recover from it quite quickly.

Leading up to the remission i was not as ill as i am this time and i basically did a strict diet no alcohol etc and slept 16 hours a day for 2 years. when i was awake i did minimum housework etc and just looked after my kids. i didnt work and had accupuncture and aromatherapy massage for 2 years every week, i also had a lot of osteopathy. i dont really know how i got better, i also did yoga but im too ill to do that this time.

That is very interesting, Justy. It does seem that pregnancy makes life easier for people with CFS. I have heard several reports like this, and heard some CFS doctors mention this. As you say, it may be the hormonal changes during pregnancy/breastfeeding that have a good effect on this disease.

Breastfeeding releases the hormones oxytocin and prolactin.

There is an increase in the thyroid hormone T3 (triiodothyronine) in pregnancy. T3 has a strong connection to mitochondrial regeneration.

 

[taniaaust1]

Have you ever had remission from CFS (even if only for a few months), and if so, do you have any idea of what you might have done to precipitate this remission?

I had what was like a full remission (able to do everything again without feeling bad along with sport) after a very bad case of CFS/ME. I was bedridden for almost a year and had to be cared for... I got better very very slowly.. and by 3-5 years I was back in good health. Remission lasted 2-3 years, when the ME came back.. it came back no where near so bad but with even more symptoms then the first time.

What helped me go into remission was learning to listen to my body and agressive rest therapy (forcably making myself rest even when I didnt think I needed it).. basically the very oppositive thing to what GET is.

I also went to great lengths to avoid any CFS triggers eg avoided over exerting myself physically and made sure I didnt do anything which is unhealthy (no chemicals in house thou at that point of time I didnt have MCS, organic foods). I lived with the goal in mind to avoid relapses at all costs (made a ton of sacrifices to do that).

I also worked on my mind set.. meditation, positive thinking etc etc. Getting well, so so slowly wasnt easy but working on myself in many of these ways was only possible once I'd improved from the severe bedridden stage, (to which I could only be hopeful that some day I'd improve as there wasnt a thing I could do about my state. The tiniest thing was too much when very very sick so I personally dont think there is much at all the severely bedridden can do to really help themselves but if you find yourself out of that... you then can try then to take extreme care not to go backwards again).


What triggered the CFS/ME off again was as I thought I was completely well.. I stopped for quite a while listening to my body as I could get away with doing so (IF I had been aware that ones with CFS/ME can crash again when fully recovered, I wouldnt have given up being careful).
Then one day when I got stressed and wasnt physically listening to my body and out of the blue just crashed (minorly).... but before I could fully recover from that little crash, I was put into a situation out of my control where I couldnt rest that wee crash out and crashed again down further and years later, just havent managed to get back up all the way from there.

Take care anyone who is near well or thinks they are fully well. This illness lays inside your body and can hit you again at the least expected time. Do not think it cant come back (if you do in fact have ME, I think the odds are it will.. a remission and getting it back again isnt an uncommon pattern with this illness) so always keep taking good care of yourself.

 

[Tulip]

That is very interesting, Justy. It does seem that pregnancy makes life easier for people with CFS. I have heard several reports like this, and heard some CFS doctors mention this. As you say, it may be the hormonal changes during pregnancy/breastfeeding that have a good effect on this disease.

Breastfeeding releases the hormones oxytocin and prolactin.

There is an increase in the thyroid hormone T3 (triiodothyronine) in pregnancy. T3 has a strong connection to mitochondrial regeneration.

I found that pregnancy made my M.E. MUCH worse and led to permanent gland pain in my neck. By week 20, I could not function and was basically bedridden. Pregnancy also lowers your immune system and at 30 weeks, I came down with round 3 of glandular fever. Breast feeding was hell, it literally sucked the life and all my nutrients out of me. I had to stop at 3 months.

I only had one child and would never do it again. It really depends on if you have CFS or M.E. and if your immune system is lowered I think...

 

[justy]

Hi Tuliip, yes i guess we are all different with pregnancy. I have a diagnosis of M.E, but my two pregnancies and prolonged breastfeeding were when i was in remission, before that i had had a lot of immune problems, the point is that i was well when i got pregnant.

I know some people never have any remissions at all, i wish i knew what the difference was for people who do versus those who dont -an interesting area to research perhaps.
Also i agree that it never seems to really go away even when in remission most people feel a bit off. I really had no idea that i could get ill with it again so like others have said i didnt take it carefully after being sort of well for so long. It was pretty horrifying to feel it all coming back and this time i have been much more ill and for longer. I am only just now slowly slowly creeping towards being a bit better. Still housebound most of the time and feel sick all the time but my immune system has really improved and i can cook a meal and go out for short trips with my family, is till dont feel confidant to go out alone though and its been nearly 3 years since i have.

Remission ios like a double edged sword. you know it means that you can get better because its happened before but then maybe you push too hard to achieve that, on the other hand it means that once you know abpout it the fear is allways there that it will keep coming back and keep getting worse. If i recover this time i dont know if i can handle it happening again, especially as its sucvh a slow process to get some functioning back

 

[Leslie]

Have you ever had remission from CFS (even if only for a few months), and if so, do you have any idea of what you might have done to precipitate this remission?

Change of medications? New herbs? Change of diet (even if slight)? Change of daily habits? Change of house or location? Getting more sunlight (or less)? Doing more (or less) physical or mental work/activity? Starting or restarting something like meditation, yoga or some spiritual practice? Relaxation techniques?

It would be interesting to hear about remissions or even just periods when you generally felt better for a few months or so and what things (no matter how obscure) you think may have contributed to the improvement.

Yes, there have been times when I have felt better than others, or been able to go out, do things, especially if I have paced myself. I could have a few weeks of feeling pretty good. Lately, with a lot of stress I have been homebound. I would say with the stress, worse than I have ever been, or can remember. A lot of pain, very tired. I have been on pain meds only for a long time, and just recently finding this site and others through a friend I realize how much more information there is when I first got sick about, give or take, 10 years ago.
So, yes, I have had some "good" days, that is not to say that I still didn't feel bad, it was not so bad that I couldn't get out. I am hoping that this "flare up, or relapse" will end and I can get back to having those good and bad days.

 

[Sing]

This is an interesting and important subject, I think. Maybe this will turn out to be one of those subtypes.

My answer about myself is that I have never had a remission. I do better, of course, when I stay within the bounds of my energy and capacities. But, like a dog on a rope/chain/wire, I have learned that it is always there and will snap me back if I try to escape or foolishly believe I am free.

 

[shannah]

I was sudden onset and basically just kept going downhill and collecting more symptoms.

However, after more than 20 years of being severely ill, I did have a spontaneous full remission for 3 days using BVT (Bee Venom Therapy). BVT is known as a powerful immune and anti-inflammatory therapy. It happened again for 1 day a few months later while augmenting the BVT with licorice extract (at 80% strength).

You know that dream where you wake up completely well? Well it happened to me twice and it was absolutely wonderful!!!

 

[Hip]

Graded Rest Therapy !

What helped me go into remission was learning to listen to my body and agressive rest therapy (forcably making myself rest even when I didnt think I needed it).. basically the very oppositive thing to what GET is.

I like that taniaaust1! Instead of Graded Exercise Therapy, your are saying that a much more appropriate treatment for CFS is Graded Rest Therapy (GRT). Now that's what doctors need to be prescribing!

I read once a similar thing: someone said their greatest help in mitigating CFS was pre-emptive rest - that is, taking regular rest breaks, even if you are feeling good at that moment.

I just found some weblinks to this here:

Experiences with Pre-Emptive Rest

Nurture Yourself with Pre-Emptive Rest.

I guess you can easily combine that with your own strategy, namely: don't wait until your are overtired to have a break, but be in tune with your body, and at the very earliest little signs of fatigue, stop and take some rest, and recover your energy.

 

[Hip]

I was sudden onset and basically just kept going downhill and collecting more symptoms.

However, after more than 20 years of being severely ill, I did have a spontaneous full remission for 3 days using BVT (Bee Venom Therapy). BVT is known as a powerful immune and anti-inflammatory therapy. It happened again for 1 day a few months later while augmenting the BVT with licorice extract (at 80% strength).

You know that dream where you wake up completely well? Well it happened to me twice and it was absolutely wonderful!!!

Very interesting Shannah. Are you still able to get any remission from bee venom therapy, or has the effect kind of worn off?

I think bee venom therapy reduces T and B cell activation, which is similar to what rituximab therapy for CFS does.

 

[shannah]

Hi Hip,

Shortly after the first remission, I was forced to switch bee suppliers. There was a definite difference in the quality. That's when I decided to augment with the extra strength licorice (licorice is antiretroviral but didn't know that at the time) and gained a second shorter remission. A negative reaction to the licorice (probably just too high a dose) caused me to cut out the licorice. Although I continued with BVT for quite some time afterwards, I never again got the same results.

Interesting that you say BVT reduces T & B cell activation. Why so you say that or do you have a link to more info?

 

[justy]

I think that it is quite normal in M.E to have odd days were you feel relatively or even completely normal and these days are always really welcome. i have read that when your M.E is stable then it is relapsing and remiting condition in other words up and down, especially if pacing well and often the ups are for no particular reason.

The kind of remission i am talking about is 10 years of thinking i was completely cured of M.E. In retrospect i wasnt 100% but near as damn it for a person who had had MCS and other health problems most of my life.

I really would be interested to hear more from others with remissions lasting more than a few weeks abouit there symptoms in general and also what they felt caused the relapse again. Has anyone had more than one remission? My relapse happened after a few years of very intense stress and then measles. I was absolutely piling on the work and family commitments until i felt crazy with exhaustion, then i got a nasty virus and havent been well since (3 years ago) i guess if i had known i could have M.E again then i would never have behaved like that.

I think looking back from where i am now i dont think i was actually cured of M.E but just had it under control so that it was hardly noticeable.

 

[Hip]

Hi Hip,

Shortly after the first remission, I was forced to switch bee suppliers. There was a definite difference in the quality. That's when I decided to augment with the extra strength licorice (licorice is antiretroviral but didn't know that at the time) and gained a second shorter remission. A negative reaction to the licorice (probably just too high a dose) caused me to cut out the licorice. Although I continued with BVT for quite some time afterwards, I never again got the same results.

Interesting that you say BVT reduces T & B cell activation. Why so you say that or do you have a link to more info?

I read that BVT reduces T & B cell activation in this link: Bee Venom