ME symptomatic crash after Sauna

[godlovesatrier]

Hi there,

I haven't posted on this site for quite some time. But I have been reading Hip's comprehensive thread on ME diagnosis, diagnostics and treatment approaches. I've also read recently an article on oxymatrine use to deal with Coxsackie B infection.

I have been trying to find the root cause of my illness for the last 12 months, due to a deterioriation of symptoms including some new symptoms. I have positive blood tests from Armin Labs Germany for Borrelia Burg (lyme disease) and Coxsackie A, weak EBV, CMV and hsv1 active infections. These tests are contentious I realise and are also very sensitive but not very specific, which does argue, are they even worth taking seriously? Anyway I've taken them at face value.

At the start of Sept I changed my diet to exclude almost all gluten, dairy and wheat (I have a little of each left in my diet, but at much smaller amounts than previously). I cut out all processed food and takeway food, including all processed sugar. I started a liver detox 3 x a day which consists of milk thistle, curcumin and dandelion now. I also take 3 or 4 anti viral tinctures and about 5 to 6 anti viral and bacterial/fungal capsules. Some of this is Buhner protocol, some of it is my own invention for immune boosting and inflamation reduction. I managed to become almost 100% symptom free last week, after taking the above 3x a day for 4 weeks.

On the sunday just gone I decided to go to the sauna for about 15 minutes. This was steam room combined with a little Sauna. I felt a little dizzy afterwards and then deteriorated quickly from there. I find that my symptom picture deteriorates quickly after any excercise, or any type of mental or physical stress (even such as heat like the Sauna). I know other people get this. But after the sauna I was left with immediate stomach upset (bubbling in stomach for 2 days), fatigue for about 2 days, dizziness which has lessened but has not gone away and neurological issues of concentration, bad temper and poor mood (very depressed the first 2 days).

I just wanted to ask if anyone else has linked adrenal, pituitary or thyroid problems to their ME? I ask because these are trickier to test for and I am now stuck as to which route to take with testing. At hte start of the year i started experiencing racing heartbeat at night and very bad dehydration. This dehydration almost stopped with plant based anti viral and anti bacterial treatment last week for about 2 weeks. However now my dehydration is back after PEM and it's very bad. I drank 3.2 litres today and my mouth is completely dry and my lips are the same. I have tried re-hydration salts with 2g sugar, this gave me aches and pains under my skin and through my body. So I don't think loss of salts is the issue.

I have read HIP's post about other tests. ANA, Hypothyroidism and chronic lyme are the only potential root cuases. But I still can't help thinking it's an immune system problem, as until I started taking huge quantities of anti bacterials and anti virals I was getting ill all the time, in the winter htis consists of 6 months of being ill. I do still manage to work, but I really need to get my brain fog under control and my emotional outbursts, as it is effecting my work. I am not sure yet if I will get back to where I was a week ago feeling almost symptom free.

Thanks.

 

[Wolfcub]

You seem to have been doing well recently @godlovesatrier with the anti-viral herbs etc.

It sounds like the extreme heat of the sauna, you just couldn't tolerate. Many of us, myself included find extremes of heat and cold difficult. Sometimes, sadly, I can't tolerate even a nice hot bath any more, and it will send me downhill for a while with the "old symptoms". But there are unpredictable times when I can and it is very helpful for my poor old back!

I hope the slipping back a bit which happened after your sauna will ease up in the next few days and you'll get back to where you were before.

I think there is always the discouragement factor to account for as well.
We think we are doing well....then suddenly the damn thing comes back again!
That is enough to be quite depressing and annoying. I know. It happens to me too. I get a decent remission sometimes for a week or more....then something kick-starts symptoms off a bit again, and I just burst into tears! It can feel very discouraging.
Maybe that is what is causing you to also feel irritable?

But I have been bursting into tears since day one! That was one of my initial symptoms. Crying over music....animal rescue videos....happy memories....a beautiful day....etc Or just because I felt nauseous.
I can always tell when I am in remission because I can listen to music without waterworks.

 

[Sarahloudobby]

I really hope this passes and you get back to where you were as it sounds like you had made real progress previously.
I am fascinated to read about the crying as I have never thought of that as an ME symptom but now that I think about it it makes utter sense. I cry so easily it’s crazy

 

[Moof]

I always get severely dehydrated in a crash (or even a downward direction) – I think that's pretty normal for ME. I always read it as a signal to cut out every activity and stress I feasibly can, for a few days at least.

I can't answer your questions about tests, unfortunately, as they're not normally done in the UK. My ME has followed a pretty standard relapse / remission / relapse / remission course over 40+ years, and nothing other than appropriate pacing and a couple of supplements (BCAAs and B12 injections) has ever influenced it. It's an extremely variable disease, where it can be easy to attribute improvements to interventions when actually the improvement would have happened anyway.

I guess I'm in a different place to you (after being ill for this long, you become much more accepting); but I just wanted to say that there are a lot of people out there who'll happily take lots of money from you for things that may not help much at all. We all want to feel that we're taking positive action to help our recovery, of course – but my experience is that you're just as likely to hit on good strategies by simply trying them, as you are seeking to test for the (currently, at least) untestable.

I hope you do find a way forward, anyway, and that you're feeling much less crap very soon!

 

[Sarahloudobby]

I agree with you totally about the tests, as I’ve found that I have only had success in ruling things out as opposed to finding out what’s wrong

 

[godlovesatrier]

Hi everyone.

Thanks for your responses. I guess like all of you on here I just get so frustrated that I can't ever get past the remission phase and I often think a lot - why does the body get to this stage by itself but it can't sustain it after exertion? And then I try to research as much as I can. But all I can surmise is that all my symptoms are effected by my immune response. I can't believe the amount of anti viral and anti bacterial capsules I am taking to get my immune system up to a normal level. I can still work though so I guess I can't be too annoyed. To be honest it's the symptoms of anger, aggressiveness and essentially what many would describe as "dark depression" that bother me. I felt like I was stuck in a hole on monday and daylight was but a pinprick above me. Suffice to say I am recovering more quickly than usual tonight, which is amazing as a PEM-recovery option. But I do get frustrated that so many of us have gone ill for so long and there's no dissemination of treatment approaches for what is obviously multiple root causes.

I just kind of get to the stage where I believe I am not ill/making it up, further reinforced by people I work with, in passing if not directly. Then you push yourself and you feel like your fingernail hanging from the edge of a very tall cliff. That and having no appetite at all in a crash, I hate that symptom. It's nice to have people like yourselves tell me you are the same and I'm not imagining it or indeed thinking I don't have ME when I obviously do!

@Sarahloudobby I think your right, for me it's the anger. I can get angry with strangers, angry when driving...just angry all the time sometimes I am not even an angry person! I realised at the start of the year that adaptogens like siberian ginseng made this mood problem 10x worse. I've ditched the adaptogens completely now anyway.

@Moof Hi Moof. I know what you mean about accepting, I got like that at the start of the year. But my neurological issues were so intense and my depression was so bad...I just had to try and do something. I am glad it is mostly working I must say, I just got it into my head it might cure me which was a bad idea. As for the dehydration it's primarily bad when asleep, I was getting severe dizziness and dehydration style nightmares before I started taking the anti viral and anti bacterial plant based meds. And you're probably right about the tests. But then I think I can't help but feel I am missing a trick you know? Like taking valtrex/valcyte for example. Suffice to say the money would probably be better spent on quality of life wouldn't it? I think you may have a point there. I've learnt to enjoy what I can control...slow process.

Thank you.

 

[ljimbo423]

I guess like all of you on here I just get so frustrated that I can't ever get past the remission phase and I often think a lot - why does the body get to this stage by itself but it can't sustain it after exertion? And then I try to research as much as I can. But all I can surmise is that all my symptoms are effected by my immune response.

I agree that our symptoms are being caused by an immune response. This is a quote from ME/CFS researcher Chris Armstrong as to what is causing the immune response, PEM, fatigue and malaise in ME/CFS -

Well we all experience a bacteremia when we exercise. The type of bacteria that enter your bloodstream are usually quite controllable by your immune system but if your gut is further compromised they may release more bacteria into

your blood or more pathogenic species or your immune system may already be depleted. This is the concept for the chronic sepsis or SIRS and this is what I think may be behind PEM.

Link to his post

 

[ljimbo423]

To be honest it's the symptoms of anger, aggressiveness and essentially what many would describe as "dark depression" that bother me.

You might be interested in Jarred Youngers' presentation at the OMF symposium in September.

He explains how the immune system is causing an activation of the immune cells in the brain (the microglia) and how they are causing anxiety, fatigue, malaise, etc. It's only 20 minutes, so it's not a long video.

link to video

 

[Moof]

my depression was so bad...

Depression isn't a core part of ME for most people, though it can of course be a secondary consequence. But it's one of the things you can treat, so it may be worth focusing on that first? Honour it as a condition in its own right, don't assume it's an inevitable part of ME...and if you can move forward with it, you'll be in a much better place to tackle ME symptoms.

But then I think I can't help but feel I am missing a trick you know?

W all do that. All the time! Secretly we're hunting for something with a silver bullet solution, even though we know it's more likely to be ME than anything else. But I restrict myself to googling stuff rather than spending shedloads of money. By the time I've read through a bunch of research where I only understand every tenth word anyway, I'm so tired that the urge has gone!

As for the nighttime dehydration – I have that, but it's only bad enough to wake me if I sleep on my back. I think I literally just start breathing through my mouth in that position, which dehydrates me very rapidly. There are a number of possible causes for dehydration, but sometimes it is something as simple as that. Hope you can get round it and maintain the improvement, anyway.

 

[Sarahloudobby]

I agree as I was already an anxious person with onset of depression which had required seeing a counsellor at one point, these conditions existed before the onset of ME for me but are definitely made worse as a consequence of the condition I think rather that being symptoms of it. However the emotional overload I feel does seem worse when my ME is flaring up. Tonight I’m not feeling as bad as I can feel, in bed already (9:36pm here in UK) and legs aching but not unbearable. I really appreciate good days

 

[godlovesatrier]

@ljimbo423 Thanks. Was reading about chronic sepsis for ME/CFS. The more I think about it the more this sounds like me. It was really strange yesterday drinking salt and a lot of sugar...no idea what type of sugar...that I then started to get pain all over my body which compromised my ability to focus, i also became extremely tired and very sleepy. So it would make sense that it could be leaking into the bloodstream - and therefore so could other things causing a sepsis state - if I read it correctly! Or it was just a reaction to the sugar in some odd way. Either way I have already changed my diet but now I have done this my sensitivities appear to be getting worse. I guess after reading about Babesia and EDS/CCI/AAI (not that I have EDS) you get super scared about the future. I also found another thread on the rising forums where a dr used vitamin c, hydrocortisone and Thiamine intravenously to treat forms of sepsis successfully. I cannot tolerate vitamin c in almost any dose as it irritates the mucus membranes of my gi tract and I just can't tolerate it after a few days at all. However while I could tolerate it, I found almost all my symptoms vastly improved and I felt really good within about 2 days. I thought that was a slightly strange turn around. An OAT test showed I had no vitamin c on that particular day the urine sample was taken, which was odd, but that's what I decided to supplement. I now use trans dermal patches - I don't suppose anyone knows if these actually work?! I am still not sure! (IV Protocol: http://www.evms.edu/about_evms/admi...munications/publications/issue_9_4/sepsis.php)

@Moof You're right about the depression moof. The only things I've yet to try are black cohosh (although this seems to work for women not men) and pine pollen. Problem is increased testosterone is fraught with the same issues as I am trying to get rid of and Amino Acids cause huge down regulation so I avoid them like the plague. 5htp never did anything for me. But the liver cleanse and anti virals appear to help, however andrographis for example, lowers my overall mood if anything. All the adaptogens of course help hugely, Cordyceps, Licorice Root and Reishi complex. Anyway important to treat it seperately. I am hoping I only stay "down in the well" so to speak, for another few days or a week. I literally tried everything for the dehydration from turning the radiator off, to opening the door of the bedroom, to trying an electrolyte combination in the evening. The only thing that seemed to really help was a large quantity of orange juice, which is primarily sugar. But that does go back to my vit c hypothesis.

@Sarahloudobby Yes I am in bed at 8pm every night and definitely asleep by ten (ooh 5 minutes left!!) (UK here too). If I don't go to bed then the next day is horrible. Of course this isn't too bad as I still work. But wading through treacle is not nice. Plus I am dyslexic so when that kicks in (I barely noticed it before I got ill) everything feels harder. Mood wise your right, it's a hard one. I had depression before my ME, it's just become a lot more severe, but I never remember having anxiety. I don't know I just can't help but feel like the PEM depression we feel is a direct consequence of inflammation, neurons firing badly in the brain, fewer amino chain acids available for dopamine and serotonin production and add to that muscle fatigue and compromised atp production. I guess that would make anyone depressed But I do think it's related.

 

[ljimbo423]

I had depression before my ME, it's just become a lot more severe, but I never remember having anxiety.

I don't know I just can't help but feel like the PEM depression we feel is a direct consequence of inflammation, neurons firing badly in the brain, fewer amino chain acids available for dopamine and serotonin production and add to that muscle fatigue and compromised atp production. I guess that would make anyone depressed But I do think it's related.

I had anxiety attacks that started at least 10 years or more before my CFS. I think it was dysbiosis and increased intestinal permeability (leaky gut) that caused them even then.

I also think that my gut worsened over the years until I developed CFS from it. I think my anxiety and CFS are both caused by my dysfunctional gut. However, if there's an easy fix, I haven't found it yet!

This is a quote from a paper called "Gut microbiota’s effect on mental health: The gut-brain axis".

Abstract
The bidirectional communication between the central nervous system and gut microbiota, referred to as the gut-brain-axis, has been of significant interest in recent years.

Increasing evidence has associated gut microbiota to both gastrointestinal and extra gastrointestinal diseases. Dysbiosis and inflammation of the gut have been linked to causing several mental illnesses including anxiety and depression, which are prevalent in society today.

Probiotics have the ability to restore normal microbial balance, and therefore have a potential role in the treatment and prevention of anxiety and depression.

This review aims to discuss the development of the gut microbiota, the linkage of dysbiosis to anxiety and depression, and possible applications of probiotics to reduce symptoms.

Link to paper

I think probiotics can help to some degree in people with very mild dysbiosis. Beyond that, much more aggressive interventions are needed to make a significant impact on well established dysbiosis and leaky gut.

 

[Wolfcub]

Hi everyone.

Thanks for your responses. I guess like all of you on here I just get so frustrated that I can't ever get past the remission phase and I often think a lot - why does the body get to this stage by itself but it can't sustain it after exertion? And then I try to research as much as I can. But all I can surmise is that all my symptoms are effected by my immune response. I can't believe the amount of anti viral and anti bacterial capsules I am taking to get my immune system up to a normal level. I can still work though so I guess I can't be too annoyed. To be honest it's the symptoms of anger, aggressiveness and essentially what many would describe as "dark depression" that bother me. I felt like I was stuck in a hole on monday and daylight was but a pinprick above me. Suffice to say I am recovering more quickly than usual tonight, which is amazing as a PEM-recovery option. But I do get frustrated that so many of us have gone ill for so long and there's no dissemination of treatment approaches for what is obviously multiple root causes.

I just kind of get to the stage where I believe I am not ill/making it up, further reinforced by people I work with, in passing if not directly. Then you push yourself and you feel like your fingernail hanging from the edge of a very tall cliff. That and having no appetite at all in a crash, I hate that symptom. It's nice to have people like yourselves tell me you are the same and I'm not imagining it or indeed thinking I don't have ME when I obviously do!

@Sarahloudobby I think your right, for me it's the anger. I can get angry with strangers, angry when driving...just angry all the time sometimes I am not even an angry person! I realised at the start of the year that adaptogens like siberian ginseng made this mood problem 10x worse. I've ditched the adaptogens completely now anyway.

@Moof Hi Moof. I know what you mean about accepting, I got like that at the start of the year. But my neurological issues were so intense and my depression was so bad...I just had to try and do something. I am glad it is mostly working I must say, I just got it into my head it might cure me which was a bad idea. As for the dehydration it's primarily bad when asleep, I was getting severe dizziness and dehydration style nightmares before I started taking the anti viral and anti bacterial plant based meds. And you're probably right about the tests. But then I think I can't help but feel I am missing a trick you know? Like taking valtrex/valcyte for example. Suffice to say the money would probably be better spent on quality of life wouldn't it? I think you may have a point there. I've learnt to enjoy what I can control...slow process.

Thank you.

I really feel for you. Some of what you experience sounds similar to things that happen to me. I don't get angry any more. That's the only thing. Slightly grumpy sometimes with general rubbish one encounters....even litter on my beautiful country lane or pee'd off with arrogant drivers where I'm likely to give the two finger salute.....
I'm getting on for "old" though, and old bats are entitled to be grumpy sometimes! haha

I also found Siberian Ginseng to be absolutely the wrong medicine for me! I discovered that some time ago. It gives me an instant headache. It is too powerful I think for some constitutions. I can't take it at all.

Like you I also feel deep dismay that something has "taken me over" like some form of alien invasion, mysterious, horrible, and isolating.
I, who was always strong, well and tremendously fit....suddenly cannot recover like I always have done! I also get remissions, and am slowly learning not to believe they are complete healings. In the past, they would have been!
Yes this is so weird.

 

[Judee]

You were doing a lot of liver detox with the herbals. I've heard that saunas also help with detox. I wonder if your body was handling the others okay but that extra level of detox put you over the top.

My environmental doctor says everything is cumulative. For instance, I can eat apples in the winter months when pollen counts are low and not react but in the summer when my body is dealing with birch pollen, I react to the apples...pears too, actually as a cross reaction. He said it's because my immune system is already dealing with one battle and then by eating the apples, I add another.

Also dealing with a huge detox dump can also make a person very emotional. It's a complete overload for our systems.

I know it's very tempting to try and get to the next level of remission with this disease but it may not always be safe. I see that a lot on PR. Someone will say something is working but then they add another thing into the mix and crash. You're not the only one. I've done it too.

Hope you can get back on track with this. It sounds like you were really doing well.

Maybe you could back off on the detox herbs for a day or two to see if your system can catch up a bit.

 

[godlovesatrier]

I really feel for you. Some of what you experience sounds similar to things that happen to me. I don't get angry any more. That's the only thing. Slightly grumpy sometimes with general rubbish one encounters....even litter on my beautiful country lane or pee'd off with arrogant drivers where I'm likely to give the two finger salute.....
I'm getting on for "old" though, and old bats are entitled to be grumpy sometimes! haha

I also found Siberian Ginseng to be absolutely the wrong medicine for me! I discovered that some time ago. It gives me an instant headache. It is too powerful I think for some constitutions. I can't take it at all.

Like you I also feel deep dismay that something has "taken me over" like some form of alien invasion, mysterious, horrible, and isolating.
I, who was always strong, well and tremendously fit....suddenly cannot recover like I always have done! I also get remissions, and am slowly learning not to believe they are complete healings. In the past, they would have been!
Yes this is so weird.

Yes it's a difficult illness. You get into remission and then you feel that this time your healed. Then you relapse.

I seem to have made a good and rather quick PEM recovery. Quickest ever maybe? As it's been about 11 days. Normally it can take 4 to 8 weeks and it may never even arrive. So the herbal protocol is helping.

I guess now I'm most interested to know what causes PEM. I wonder if there are any new studies that show what's possibly causing this.

 

[godlovesatrier]

You were doing a lot of liver detox with the herbals. I've heard that saunas also help with detox. I wonder if your body was handling the others okay but that extra level of detox put you over the top.

My environmental doctor says everything is cumulative. For instance, I can eat apples in the winter months when pollen counts are low and not react but in the summer when my body is dealing with birch pollen, I react to the apples...pears too, actually as a cross reaction. He said it's because my immune system is already dealing with one battle and then by eating the apples, I add another.

Also dealing with a huge detox dump can also make a person very emotional. It's a complete overload for our systems.

I know it's very tempting to try and get to the next level of remission with this disease but it may not always be safe. I see that a lot on PR. Someone will say something is working but then they add another thing into the mix and crash. You're not the only one. I've done it too.

Hope you can get back on track with this. It sounds like you were really doing well.

Maybe you could back off on the detox herbs for a day or two to see if your system can catch up a bit.

I'm almost back where I was. Which I didn't expect to be. But I got it into my head that this might be a treatment when that seems unlikely. That's why I now want to focus on and try to find root causes for PEM. As it would appear to be my last symptom. My orthostatic intolerance has got a lot better.

Thanks for all you're replies. I read into the chronic sepsis which was fascinating!

 

[Mary]

You were doing a lot of liver detox with the herbals. I've heard that saunas also help with detox. I wonder if your body was handling the others okay but that extra level of detox put you over the top.

I was thinking the exact same thing. I've had a lot of experience with detoxing. It can screw up your stomach, make you tired, mess with your brain. I've had it happen after a sauna, a far infrared sauna, a foot soak detox which wiped me out for 3 days, after taking certain supplements, most noticeably glycine for sleep, and other things. I didn't get angry though - actually I sometimes felt a bit high, like I was stoned. I think it was from mercury in my brain and it generally took 3 to 4 days to get back to "normal".

BTW, I learned that glycine is important for detoxing so it was stimulating my detox pathways, but I could only handle it in small doses and eventually gradually over time was able to increase it. Now I rarely have detox symptoms. Inositol and glutamine also helped with this, although I can't take glutamine any more because it causes insomnia for me.

I now want to focus on and try to find root causes for PEM. As it would appear to be my last symptom. My orthostatic intolerance has got a lot better.

Good luck! Do keep us posted

 

[Mary]

I cannot tolerate vitamin c in almost any dose as it irritates the mucus membranes of my gi tract and I just can't tolerate it after a few days at all.

Have you tried buffered vitamin C? One form has calcium, magnesium and potassium, and there's another form called sodium ascorbate (with no calcium, etc.) You might tolerate these better.

Taking a bit of a high dose of vitamin C (plain ascorbic acid) at night is making a world of difference for my sleep. A "bit of a high dose" is 2000 mg after dinner and 3000 mg. before bed and 3000 more in the middle of the night. Vitamin C ameliorates glutamate-induced excitotoxicity.
https://www.ncbi.nlm.nih.gov/pubmed/25701025
http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/vitamin-c/

I'm not trying to derail your thread here, I'm explaining all this as a lead up to the fact that sodium ascorbate did NOT help me with sleep, despite being a form of vitamin C, and it left me feeling flat. And I didn't try the buffered form with calcium because calcium was part of my problem in not sleeping.

Which leads to my point that if you try a buffered form of vitamin C, you might tolerate it and it might work, or it might not work the same as regular ascorbic acid did for you. I don't know why the sodium ascorbate did not help me with sleep, unlike plain ascorbic acid, but that's what happened (or, rather, didn't happen).

I wonder if you would tolerate liposomal vitamin C better? I know it's pricey. Here's a thread on making your own: https://forums.phoenixrising.me/ind...o-make-liposomal-vitamin-c-for-viruses.38867/

 

[Mary]

I seem to have made a good and rather quick PEM recovery. Quickest ever maybe? As it's been about 11 days. Normally it can take 4 to 8 weeks and it may never even arrive. So the herbal protocol is helping.

Glad to hear this. BCAAs (branched chain amino acids) might help you recover even more quickly - they cut my PEM recovery time in half and are helping many other people - see https://forums.phoenixrising.me/index.php?threads/bcaas-reducing-pem.34719/

 

[godlovesatrier]

Yes I think the Reishi Complex I take is quite high in these regardless of it being an Adaptogen. It doesn't give me the anger associated with siberian ginseng either. It does however make it hard to sleep if taken for more than 3 days - but i do think when liver detox is high and bioavailability is increased, lots of herbs are utilised extremely quickly by the body. I take the Pukka Mushroom Gold complex which includes a few immune boosting mushrooms.

The problem I have found with taking singular amino acids when not in a complex is the issue of down regulation. I found a great paper on this at the time which I am now struggling to locate. It describes how the incredibly complicated BCAA process works in the brain and how disturbing one BCAA level in the brain through supplementation can cause extreme down regulation when you come off it. I found another research paper that showed depression and BPC could be cured, but that the exact dosage for trytophan tyrosine and others was incredibly difficult to pin point and was (unsurprisingly) unique to each patient.

Even so I think this is why Reishi works so well. I hear Pine Pollen and Bee Pollen are similair, but sourcing Bee Pollen is tricky and it tastes like earwax (yuck). Plus Pine Pollen is a tad more aggressive and then your potentially back to the adaptogen problem again. I also found a seminar on Adaptogens which was great: https://traditionalroots.org/files/2015/05/Bergner-Dark-Side-Adaptogens.pdf