Health improves away from home

[frazrj]

I was just wondering if there was anyone out there that has had a similar experience to me.

I came down with me/cfs in 2008. recovered to about 80-90 percent after two years and stayed that way until early 2018.

In early 2018 I started to feel a gradual but major relapse of CFS. (The usual Muscle fatigue and PEM etc). Since 2018 overall I am pretty consistent level of poor health around 40-50/100. Whereas when I initially came down with ME/CFS in 2008 there were more pronounced ups and downs on an upward road to recovery.

I live in London and last year (2020) I realised that the only two times when I had a major upturns in my health were immediately after being away from home to visit relatives at Christmas&NY. We spend about one to two weeks every year with relatives who live two hours outside of London.

2018/19, After spending about 10 days away the day I arrived back in London I had this sudden feeling of being in perfect health again. It was like someone had just flipped a light switch and I was back to normal. After being ill for so long the feeling was euphoric. After being back home in London for two to three days the good health faded and I went back into the fatigue and gen malaise.

In 2019/20 Again I stayed with relatives over Christmas/NY. This time about two+ weeks. When I got back to London same thing happened. My health went back to 100 percent. This time it lasted about 1-2 weeks. I was even able to do a workout which I hadn't done for 2 years!

In 2020 I realised that the only two times in the last two years my health improved was after being away and there must be something to this. I decided to test this theory by booking a two week holiday in the countryside for the summer of 2020. After a week I was not feeling well and disappointed and I thought my experiment failed but the very next day it happened, my normal fatigue and general malaise disappeared completely. Again, the change in health was sudden, not gradual over days and weeks. This remained for the last week of the holiday and about two days after I got back home to London.

I thought perhaps it was something in my home environment making me ill so I stayed for a couple weeks at a friends place in London in the summer of 2020 but i didn't see any improvement in my health after two weeks there.

I still believe it's likely that it is something in my environment. The only three times (in three years) when I have had a significant upturn in my health was after being away from home for a period of time. I haven't since been able to get away again due to covid restrictions and lockdowns.

I was just wondering if anyone else has had a similar experience?

 

[Tammy7]

Very interesting. I have heard others with CFS that have reported similar. I have only traveled once since having CFS and was in Hawaii for a couple of weeks. The difference that I noticed was that I slept so good during my stay there. My sleep went back to crap after I returned home.

 

[Lissa]

This phenomena could very well be associated with toxic mold exposure. Some people do sabbaticals to see if it is their house that is the culprit. Going away to a pristine environment may prove to be beneficial... you may not notice it at first, but when you return home there will be a significant backslide. Just a possibility. If you think it might be happening for you there is a lot of information about mold, mycotoxins, and detoxing readily available online. It's a pretty big deal!

 

[frazrj]

This phenomena could very well be associated with toxic mold exposure. Some people do sabbaticals to see if it is their house that is the culprit. Going away to a pristine environment may prove to be beneficial... you may not notice it at first, but when you return home there will be a significant backslide. Just a possibility. If you think it might be happening for you there is a lot of information about mold, mycotoxins, and detoxing readily available online. It's a pretty big deal!

Thanks, I was half thinking about this. I know I have mold in my flat whether that's causing the problem I don't know. I've Always had a problem with mold my flat due to condensation and the build construction of this building doesn't allow for proper ventilation. It's never caused me a problem with my health in the past but who knows. I would love it if that was the answer because I would have a definite solution

I've been trying to find a solution that will allow me to get away for a three months and see how it goes. problem is the lockdowns here in UK and the price it cost to get away. all the booking sites these days are per day or per week which can be costly. So yeah i will keep planning a trip away.

 

[chickadee]

I'm in a somewhat similar situation as you, and I'm trying to figure out what to do about it.

Fair warning (and a heads up): there is a LOT of information out there about mold but very little peer reviewed science or clear treatment guidelines. Much of it is contradictory, and a fair bit of it is, frankly, fear porn which can frighten, confuse and paralyse you, rather than helping you know what to do. Worse, some of it seems to be using fear porn AND the 'solutions' are always behind paywalls (faaar more than any other illness/health-challenge information, in my experience). This, more than anything, makes me doubt the entire field, and the various experts.

One of the biggest considerations is whether or not you are a vulnerable genetic type. Since you responded so clearly, hopefully that's a sign you're not (mold can impact anyone with long enough exposures, vulnerable genetics or no).

I haven't followed up yet to see if the step beyond this is the usual fear porn/paywall, but I recently discovered this documentary: https://moldymovie.com/movie/. It contains a lot of useful information (but not a lot of solutions thus far), and does an excellent job of describing what it's like.

I know Erik Johnson (Johnston?) gets a lot of grief on here (unfortunately, he and Dr. Shoemaker were initially some of the biggest fear porn/paywall producers out there - more Dr. Shoemaker than Erik to be fair), but his emphasis on (and anger about) the STILL unexplored and unstudied connection between mold exposure and MECFS in one of the first, biggest, and most well-known CFS incidents (Lake Tahoe) is valid and warranted, imo. His approach recommends exactly what you've done: as a first step remove yourself from your environment to see if your reactions are different. He pioneered this based on his military training re: toxic exposures (see his free books and the site linked above).

Another caution: avoid at all costs getting vaccinations (of any type) when you are in a known moldy environment. That is one of the known triggers of MECFS for susceptible people - one that very few people seem to be aware of. I'll post the research study link if I can find it.

ETA: Dampness and mold hypersensitivity syndrome and vaccination as risk factors for chronic fatigue syndrome: https://pubmed.ncbi.nlm.nih.gov/30408578/

ETA #2: Interesting timing: I just now got an e-mail reminder for this free seminar series you might be interested in: Toxic Mold Summit - sponsored by Dr. Margaret Christensen: https://toxicmold.byhealthmeans.com/

 

[NYStew]

For me it was mold exposure. Took a long time to release the toxins as I am homozygous for MTHFR C6776. Shortly after moving back to my apartment, that was supposedly repaired, I became ill again. The first week back, leak in same spot. Two more leaks since.
Last week I found the radiators are leaking and I have hardwood floors. All summer long, I smelled the musty smell coming from the radiators. I assumed it was the basement as I am on the first floor. Building was damaged and basement flooded during Hurricane Sandy. 24 November saw visible mold.
You do not have to smell mold to have it. Some people can clear environmental toxins easier than others. Wishing you well.

 

[Creekside]

Temporary remissions sure do make one feel euphoric. Part of you believes that the problem is solved, and the nightmare has ended ... and then the ME symptoms return. I haven't had one for many years, but the fact that ME can switch back to full health so quickly keeps me hopeful that ME can be treated/cured.

I don't have a problem with molds, but it seems reasonable that such a factor can keep some people in the ME state. If my cure was that simple, I'd just just move to a desert or some other low-mold locale. and avoid indoor plumbing if necessary.

 

[frazrj]

Thanks for all of the replies!

I have read stuff in the past in different areas of cfs/me research and I will have a look at the links you sent me but I have similar views to @chickadee . It can be good information but you can also get lost in a maze of information and then your are left trying to determine which is the most reliable data or if in fact any of it is. Sometimes you come out more enlightened but with no solutions but then i keep reading and researching anyway.

I have searched for answers and I will continue to do so but really most of the time I feel like I am grasping at straws. I try to look at things analytically. Things like was happening in my life at the time of my relapse. They had just completed work only my flat and the building. I dunno if that is a factor. As i said the most significant thing is that when I've gone away I get better so that it the most realiable data i have so far.

The only idea that I have formed in my head is that when I initially came down with me/cfs the aftermath has left me with a venerability in my overall health that could be triggered by certain stressors.

A large part of me just thinks I don't really care what's causing me to have this strange relapse of ME so long as I find the solution ie if i am better when I am away from home then don't go back home. A bit like a guy goes to the Dr. and say to the dr it hurts when I put my arm over my head like this and the dr says so don't put your arm over your head.

For me if i go somewhere and my health goes back to normal that's problem solved. I don't need to know if it mold or 5G radio waves that are infecting my mind )

So fingers crossed. like I said so strange that they only three times I've felt better is after being away from home for a period of time and two of those times was visiting in-laws at Christmas and who's heard of anyone's health improving after visiting the in-laws so I figure the must be something to this.

I have looked into a lot of different things over the years with ME/CFS. Usually after a bit of reading i just get overwhelmed with vast about of details which rarely offer any real world solutions.

I suppose i am contradicting myself massively by asking if anyone has experienced something similar then saying I don't care what's causing it so long as I get better but i reckon more than a few people here know where i am coming from on this. It's like you keep fighting. You keep searching for answers with the mentality at the minimum i should be trying new things and not just accept the situation but ultimately you can feel like a dog chasing it's tail.

And yes @Creekside I have had that exact same thought you mentioned..."but the fact that ME can switch back to full health so quickly keeps me hopeful that ME can be treated/cured."
and that's what keeps me going as well.

 

[madie]

I bought a Coway air filter a few months ago and put it at the top of the (open, curtained) basement stairs. Within a week brain fog and fatigue improved. I've also gone back to taking Quercetin 2x a day, and the combination provides a consistent and noticeable lift.

 

[frazrj]

I bought a Coway air filter a few months ago and put it at the top of the (open, curtained) basement stairs. Within a week brain fog and fatigue improved. I've also gone back to taking Quercetin 2x a day, and the combination provides a consistent and noticeable lift.

Thanks, I'll give that a try. My flat is very dusty so I could use one. constantly vacuuming, never seems to be enough

 

[JameDiagonal]

I'm in a somewhat similar situation as you, and I'm trying to figure out what to do about it.

Fair warning (and a heads up): there is a LOT of information out there about mold but very little peer reviewed science or clear treatment guidelines. Much of it is contradictory, and a fair bit of it is, frankly, fear porn which can frighten, confuse and paralyse you, rather than helping you know what to do. Worse, some of it seems to be using fear porn AND the 'solutions' are always behind paywalls (faaar more than any other illness/health-challenge information, in my experience). This, more than anything, makes me doubt the entire field, and the various experts.

One of the biggest considerations is whether or not you are a vulnerable genetic type. Since you responded so clearly, hopefully that's a sign you're not (mold can impact anyone with long enough exposures, vulnerable genetics or no).

I haven't followed up yet to see if the step beyond this is the usual fear porn/paywall, but I recently discovered this documentary: https://moldymovie.com/movie/. It contains a lot of useful information (but not a lot of solutions thus far), and does an excellent job of describing what it's like.

I know Erik Johnson (Johnston?) gets a lot of grief on here (unfortunately, he and Dr. Shoemaker were initially some of the biggest fear porn/paywall producers out there - more Dr. Shoemaker than Erik to be fair), but his emphasis on (and anger about) the STILL unexplored and unstudied connection between mold exposure and MECFS in one of the first, biggest, and most well-known CFS incidents (Lake Tahoe) is valid and warranted, imo. His approach recommends exactly what you've done: as a first step remove yourself from your environment to see if your reactions are different. He pioneered this based on his military training re: toxic exposures (see his free books and the site linked above).

Another caution: avoid at all costs getting vaccinations (of any type) when you are in a known moldy environment. That is one of the known triggers of MECFS for susceptible people - one that very few people seem to be aware of. I'll post the research study link if I can find it.

ETA: Dampness and mold hypersensitivity syndrome and vaccination as risk factors for chronic fatigue syndrome: https://pubmed.ncbi.nlm.nih.gov/30408578/

ETA #2: Interesting timing: I just now got an e-mail reminder for this free seminar series you might be interested in: Toxic Mold Summit - sponsored by Dr. Margaret Christensen: https://toxicmold.byhealthmeans.com/

Thank you for these links. They will really be useful.

 

[buckey]

i too have this strange fenom. I can go an hr. from home and feel better. I personally think its the immune system shifting to a new environment. I thought we would all be cured when the pandemic hit due to the low emmisions being so low from all kinds of sources. I recall when i was sicker than i am now.....as soon as the farmers would begin to spray chemicals in the springtime i would go down hill big time. I had/have severe chemical sensativities to firstly chemicals which later spread to many other things like dust mite allergy etc. I also have EMF sensativities so perhaps its all these radio cell towers doing this to us?
One time i went out to my brothers place of employment...i followed him into an isolated room full of huge electrical panels with high voltage...i had to leave ...i began to stumble and loose my balance...i had to get the hell out of there. interestingly my brother says same thing happens to him but to a lesser degree.
I was one of those people that had to sleep in a tent to try holding my job down...when winter came i had to stay in my home ...that is when i went downhill and never recovered. I would sleep in the tent all night ...wake up and head into the house just to shower and leave for work...within seconds of entering the home , i would break out into a full fledged rash head to toe, i could also feel my health decline within seconds of entering the home...i would leave the home and feel my health go uphill...that was decades ago...ive been stuck ever since. I guess i assumed doctors would know about this....boy was i wrong. After visiting hundreds of doctors and specialists ive come to the conclusion we are being DUPPED big time. I was surprised to learn that here in Canada doctors have to follow protocals...not sure when that all changed but if this is the case, who are the higher ups that are pulling all the strings...those are the people we need to call out. I honestly believe they know SOMETHING...i mean really....how could they not know about such a devistating illness. Doctors to me are just puppets who got trained wrongly obviously by big pharma and others that have their interests in one thing and one thing only ....$$$$$$$$$$$ remember this...THERE IS NO MONEY IN A CURE .....there are cures all over the internet like the latest on vit D for MS....whew..glad i got this off my chest lol the answers will come but probably from people that are willing to try anything to get well WE WILL GET WELL!!!!!!!!