Post viral symptoms / syndrome

I wonder though if that is the explanation, or just the opposite, the immune system goes in overdrive and starts reacting to everything. I can’t tell.

I think no one knows for sure what happens. The immune system is involved for sure. It has been observed than in many PVFS/ CFS patients, the white cell count in your blood is low, suggesting the immune cells are depleted but there s a serious lack of understanding in the medical community.

I believe with 99% certainty CFS is caused by a pathogen, going along with what I had suggested would be the case.

Of course I speak only of my own illness.

Hi,

My white blood cell count has been low since I got cfs

Yes, very likely, but we are showered with viruses and bacteria every second of every day. What keeps us healthy is a strong immune system to fight all of these off. That has to be a significant weakness in the immune system to allow a pathogen to develop and take over. It seems for a lot of us, some kind of physical or emotional trauma/stress triggers this immune dysregulation.

Hi lili,

My cfs/me is a result of a car crash so not a pathogen in my case. Different paths lead us to the same place.

Beverley

How about normal bloodwork? Mine was and still is completely normal, in the middle of referent values all the time, including white cells.

Yes for some people blood work is normal. For me it was low at first, it is now normal but I still don’t feel back to normal (but better than I was) I wish I had all the answers!

Yes my blood work has always been totally normal, no signs of infection or virus.

Antibodies for any given virus are what are tested for. If a virus is suspected but has no known and previously identified antibodies it cannot be tested for.

I am epstein barr virus (EBV) positive, and I think this virus causes my neurological symptoms. Olive leave extract helps alot but I want to find out if there is a way to totally eradicate this virus. If you guys experince with this virus please let me know. I wish the best for all of you.

I wish I had an answer. Today was a miserable day. I’m looking into mast cell activation, and I know I’m somehow triggering it with what I eat. Or I think so. So depressing, just as I was thinking I was on the mend. Tomorrow is another day...

I am EBV positive too. Everyone (including doctors) told me this virus makes you feel extremely exhausted, you can barely stand up or cross the street from fatigue. However I am only IgG positive, which doctors (everyone but naturopath) explained as a past infection, which could have been 20 or 1 year ago, we'll never know. Naturopath, who is also a GP, told me all my symptoms come from still very strong effect of EBV, it's always there waiting to attack when my immune system is weak. So I really don't know. I would like to believe it's EBV and that I'm not losing my mind

Hi Zlatka,

It is estimated that about 95% of the population has been exposed to EBV.  It is very possible it plays a role in our illness, because of you google “glandular fever” (which is the common name for infectious mononucleosis, the initial infection with EBV) and “neurological symptoms” you get a lot of posts with things that seem very similar to our symptoms. I am not sure it can be completely eradicated though, it is like chicken pox, once you ve had it, your immune system gets on top of it and it lies dormant in your spinal cord but sometimes stress can trigger a reactivation of this virus and you get shingles! Maybe EBV is similar. Who knows. 

Lilum, keep positive and hope you have a better day tomorrow!

I think it is EBV because it all started with a series of three "colds" in a month or two, which is more than I've had in my entire life. I didn't recognize it on time so now I'm suffering from the effects. I do believe that one day it will go away, whatever it was, we just have to be extremely patient and be good to ourselves.

Guys and gals: how’s your billirubin? Anyone with Gilbert syndrome (naturally elevated billirubin).  I read on a blog that ppl w gilbert’s are at increased risk of ME/cfs. If that’s what we have.... i feel good today, been eating very disciplined, low histamine. Going to acupuncture soon, and looking into far infrared sauna.  There is an NIH study that says it can help with CFS.  I’ll try anything. 

Mine is normal. Glad you re feeling better! Enjoy your relaxing acupuncture. I still feel post viral syndrome is different than ME/CFS. Same spectrum maybe but different, although some people go from PVFS to CFS. I don’t know what other people think.  I feel tired of course, but it a never been my worse symptom whereas people with CFS seem to say fatigue is by far the dominant symptom. Have a good day everyone.

I absolutely agree with your "dominant symptom" observation.

Good point. Same here. Eh, at least I’ll keep myself busy while getting better...

Aaah, acupuncture. Had a good session (fell asleep) and now i feel good.  So I am researching and going down another rabbit hole of theories.  Anyone here had unusual left underarm or chest pain/swelling? Left underarm lymph nodes? How about mid-thoracic pain? So not upper back, not lower back, but at the level where your bra (for gals) strap would close. Or if you wear a chest heart rate monitor for exercise, there. I am looking at lymphatic causes for my ailment (which i do not claim apply to all here) and possible exercises i could do.  There is a UK doctor, perrin, who has some theories but it is hard to tell. So if you have a minute, please humor me and answer. Have a good weekend!

Hi Lilum,

Glad your acupuncture makes you feel better it is something I have yet to try! I had a bad day yesterday feeling really exhausted, better today apart from achy, slightly weak arms.

I never experienced mid thoracic pain, I only have intercostal (between ribs) pain occasionally. What’s that lymphatic theory?

Something with an osteopathic bent, about your lymph not draining properly and overwhelming your brain with toxins. After a virus, accident, flu, etc. So what we’ve been exploring here, but with a bit of a different mechanism. I’m asking because one of my symptoms has indeed been enlarged lymph nodes in the left underarm (still enlarged, and had mammo and mri, breast has other issues but none that would cause lymph nodes to swell). Also I get this mid-thoracic pain at night in between my ribs and in the back. You can google Perrin and lymphatic and find more. I’m not in the U.K. but I can at a minimum do the exercises he recommends... I’m doing just about everything else, why not that. Tuesday I scheduled far infrared sauna. Maybe it will help, maybe not. I’ll let you know. Hope you feel better today. 

Body brushing meant to be good to drain lymphatic system 

I do have a pretty good brush set. I used to do it when I felt at my worst, i’ll start being more disciplined about it again. 

All right, i have a recipe of how to make myself sick very fast. I read that the perrin massage and lymphatic drainage WILL make you sick, a sign that it is working. I was really motivated and found a description of it online, and started doing it.  Thanks.  Not worth it to me. I would rather be low grade meh, than full blown ill.  Also IR sauna, probably not helping me.  I am back on the low histamine diet, and feeling again reasonably ok.  I can’t believe i am saying this, but i also bought a homeopathic treatment. I am aware homeopathy is water, no matter how you describe it. Or that is my view, sorry.  But i figured, at worst i take sugar pills.  Well, i feel better. Again, maybe the low histamine diet, maybe stopping the lymphatic massage... onward and forward we go.  Hope you all have a good week!

You could be speaking exactly what I have. Mid level back pain, weakness etc. I’m newly allergic to chocolate and break out in hives if I use a body product that has sulfates. I’ve wondered about the low histamine diet! 

I just did acupuncture for the first time Monday and it was amazing!! Thank god! 

But other things that are supposed to help trigger huge relapses including : deep tissue massage, reflexology on feet, Epsom salt baths, saunas and any exercise above walking. No one knows why this is. Also- sometimes a glass of wine at night will get rid of the weakness and fatigue. Also strange! Latest theory is cortisol is dipping too low at night and alcohol raises cortisol.

Oh I was diagnosed with Mono last August. After a brief bit of recovery in October I relapsed in November.  Been struggling ever since.  

Yes, plus muscle twitches, tingling, loose stools alternating with constipation, probiotics make me sick, so does sauna. I used to also have massive panic attacks, and no, it’s not anxiety, I wish doctors stopped putting everything women-related under that umbrella. And a fog and exhaustion which you only notice in retrospect, when it lifts and you feel ok for a bit. Figure what works for you, and give it time. It will fluctuate and new symptoms will appear, but the episodes, in my experience, will be fewer and fewer, farther apart, and shallower. Be well. 

Also, if you have a choice, I would not irritate my system with more Botox, even if it is not the cause. I am using toothpaste without SLS, shampoo without sulphates, makeup without anything mineral, or my eyes swell up. Just weird, I never had any allergies before. 

Oh yep I'm never touching botox again.  I bought the homeopathy for it and I can't bring myself to take it.

Also a wired and tired feeling when the fatigue calms down.  That's usually when a panic attack happens.  I have never suffered anxiety before getting sick.  And I've drank coffee for 15 years.  

And sleep makes everything worse.  I get the sickest while asleep.  So there's not relief there.  Ive been in a bad period for about 2 weeks.  This is my longest relapse since February.  I really hope it lifts soon!! Thanks for the words of encouragement.  I never thought I'd still be dealing with this almost a year later.

What homeopathy, if I may ask. First, I don’t believe in homeopathy... except it seems to be working for my forehead numbness. Over and over again, I take mezereum, I feel better. Makes no sense. I might revisit my skepticism. So what did you get?

Hi all,

Lilum, I had a look a the Perrin lymphatic stuff, i m intrigued that you got a lot worse with it, i d like to give it a try to see if I get the same response.

Surprisingly, I feel a bit better lately (a bit cautious writing this as last time I did I got a lot worse a few days later!!) even though I ve actually bit very busy at work, not sleeping that much and eating a less than perfect diet. I can’t explain. The only thing is that it s always a positive atmosphere at work and even though it s busy, we have fun. 

Also never really believed in homeopathy but willing to challenge any ‘belief’ lately. 

Hope everyone doing reasonably well! X

I’ll have to check the brand when I get home but it’s botulism homeopathy. I’m just super nervous to put that stuff in any form back into my system! 

Well, he says you are supposed to be worse initially. Since, I’ve been feeling pretty good myself, I was able to sort house stuff that was just lying there for months, laundry, kitchen.... quite active. I am reluctant to try the method again, lest I make myself sick again. 

PS. I am really happy to hear you are feeling better. I take it as an indicator that your body “knows” how to fix this, and is able to. 

I’d be too, no matter the dilution. 

Thank you. I definitely don’t consider myself cured- first of all it s way too short in terms of time feeling ok and I still feel more tired than I should. But no odd neurological symptoms which is great, my body feels ‘normal’. I still would like to try acupuncture as you swear by it! 

Also would like to share my results of adrenal gland salivary test which a naturopathic doctor had recommended and my cortisol levels came back as above normal for all 4 tests throughout the day! Hope everyone feels better soon

Hi all, I have been feeling good lately too. I can see why a lot of people don’t always reply with news that they feel better as you sort of feel like you’ll jinx yourself! Lately I have found that I can tolerate some alcohol, coffee and later nights. Still get the odd mild symptoms but seem to be fading gradually. 

That’s awesome. You are not jinxing it, don’t think that way. I felt good and then had a drop, and freaked out. But it got quickly better and now I feel fine again, and pretty good energy. Still some gut issues, and I would not veritable for coffee or alcohol, but probably better than way anyway. Be well!

I mean I would not venture for coffee. (Autocorrect is my enema, as my son says...)

Hi yes i was diagnosed with same virus years ago and believe all my symptoms began with small shingles outbreak during my husbands terminal illness 22 months ago im going to try the olive leaf

Hi yes my lymp under right arm been achy and enlarged .had checked all good but saw your post

Hey Katm hope you’re well.  I was great and then wobbly again, which mobilized me to go to acupuncture again.  I was also 13 days late on my cycle (tmi, sorry, but relevant for the story). I had a battery of tests done, hormones, thyroid, metabolic panel.... all good. Actually pretty good glucose, which in the past had been a bit high. So doctor said, probably peri-menopause. I went to acupuncture five hours ago and told her about my missing period. She said she’d “jumpstart it”.  I know acupuncture makes me feel better, bla bla bla.... but i got my period five hours after the acupuncture treatment. That’s a whole different degree of effectiveness. I am sold for life on acupuncture. 

Hey Lillum,

I m not too bad thanks. Although very tired this week end. I always find that I feel fine at work and I crash in the evenings and week ends. So my body is definitely not quite there yet but no weird neurological symptoms apart from mild dizziness for an hour or so yesterday, which is good. I m glad you re feeling good too apart from that little wobbly, it seems most of the time, you re actually fine. As you said, our bodies can beat this and remember what normal is. I think it s encouraging when we have periods of feeling normal despite the odd wobbly.  A lot of people say it s part of the recovery when you have intermittent periods of feeling normal and then not so good, the ‘normal’ periods get longer and the ‘not so good shorter’. 

I m amazed at your acupuncturist! Starting your periods after 5h??!I still haven’t managed to try as I m really busy, but would really like to after your experience. at the top of my to do list along with going to see an Ayurvedic medicine doctor. Keep well and stay in touch please. Kx

Yes, same here,I think we can push through the day/week, but when you have a chance to relax your body is like, ok, I’m done. I found a journal from last summer, I was trying to figure what foods (if any) triggered it. It is a good reminder that indeed I am significantly better, reading all the symptoms and meds I was taking in July-August. Be well and take it easy. 

That’s amazing about the acupuncture! I have mostly been good lately. Been getting strange sensations/headaches on very top of my head. Like a mild pins and needles, not painful but would rather not have it! My colleague who was ill with me still has a lot of stomach issues/nausea and her eye problems/visual distortions have returned. I find it disconcerting when she is still poorly and worry that I will be again too. Can I ask how long everyone here has been unwell for and how it started? I’m sure you’ve all mentioned but too far up the thread to look! Keep well everyone xxx

Hi ruth! How are you and your colleagues doing? I seem to have what you all have and doctors haven’t found out anything. It all happened after me and the family had a virus. Everyone else got better but me. It’s been 6 months now. I’m going to area naturopathic doctor in a week and also have acupuncture next week for the first time. My doctors gave up on me (I even had my gb removed from this). I hope you respond in a well state! 

A bit over a year. I had a virus, Botox, and blastocystis which may or may not cause symptoms. So I can’t quite tell what was the trigger. I am almost ok, with occasional relapses. I am more and more convinced that it somehow has to do with the glymphatic system (the brain “flushing” system), vagus nerve, and breathing. Whatever triggered it. There is a similar NYT “mystery illness” article and the doctor asked ppl to weigh in. The guy in that article got hit in the head and then started with the symptoms. Good luck. 

Hi Ren and all,

A bit over a year for me too. Bad chest infection and emotional+physical exhaustion after the birth of my daughter was my trigger. Same as Lilum, I am much better but still have relapses and episodes of mild neurological symptoms like twitching and pins and needles. Much better than I was last year tough. Good self care, time, perseverance and alternative therapies as detailed previously seem tonhbe helped a lot of us. Good health to all x

Hi Ren and all,

I am doing so well at the moment, I really do feel pretty much back to my old self. I just try not to overdo it but my tiredness levels feel normal (for a part time teacher with a 7 year old son). My colleague is just left with a sort of post infectious ibs, but fingers crossed that will eventually clear up and disappear. Best wishes to you all x

I am so so happy for you! Yes, evidently your body knows how to fix itself and is doing just that. Yay!

I had a craniosacral session today and it felt good. I am also almost back to normal, like right now I feel perfect. Fingers crossed. 

Hi all,

I just wondered how everyone was doing here? I’ve a mild recurrence of some symptoms, mostly stomach related along with some headaches and muscular aches. Have had to work 5 days this week so feeling tired! Disappointed to feel those symptoms again when I thought that was it but not letting it get me down! X

Hi Ruth,

Is it linked to going back to school? I'm feeling much worse right now too. Not sure if a weather change or school run.

Beverley

Hi Ruth and Beverley,

Same with me! Also having some return of symptoms. Change of weather? More stress? Random? I don’t know. Also trying to stay positive, and stay on track. Big hug to all

Hi Kat,

Possibly a mixture of everything! Hopefully things will settle soon.

Beverley

Hey Kat, i feel I’ve been tracking the most with your symptoms, so weird that you would post. Over the past few weeks i was thinking, i wonder how is everyone? I guess fine, nobody is posting, so it must be just me feeling off again.... i had nerve pain, abdominal/gut issues, “popcorn” legs after exercise, numb hands... not as debilitating as before, but a definite recurrence or episode or whatever you want to call it.  I ascribe it to my becoming too comfortable and eating chocolate, drinking a coffee here and there, and generally straying from the health regimen i was following. As soon as i got disciplined again, i got better. Legs still popping but gut is back to normal.  I am thinking of getting into a more organized workout program, i feel like i do nothing because i feel too tired.  I also saw a herbalist and she gave me some good tinctures, teas... alas i moved, and now i have no acupuncturist. Maybe i will find one soon. Best wishes to all, the mind is a powerful thing. 

HI Lilum,

Great to hear from you and sorry to hear that you had a little episode again. Definitely not just you, I was thinking exactly the same thing as you,  thinking about everyone in this group and believing I was the only one who was not so good again, did not want to bring morale down so kept to myself! I can definitely relate to the lack of discipline as well, in addition to a bit more stress, I have  also been less vigilant with my diet and general well being... and our bodies bring us back in line! 

So annoying you don’t have your old acupuncturist anymore, I know he/she provided a lot of relief/relaxation for you. Hopefully you find someone else soon.  Be well everyone, and keep posting! 

Yes I think you may be right, a change in routine and suddenly being back at work and working 5 days this week. I have found that fizzy drinks settle my stomach best and resting as much as poss in the evening. Also keeping as relaxed as possible. I was discharged by the infectious diseases doctor this week. He just said that people get better slowly but with blips here and there. You just have to treat the symptoms as and when.

Keep well everyone and stay in touch x

ugh. typed a lot and lost it. hope you all are well. i feel good, biking makes a huge difference for me. lots more energy and a feeling of wellbeing after biking for an hour or so. now my neck and chest get itchy, eyes very dry at night. maybe related, maybe not. all in all, pretty good, i think more and more this is related to the lymphatic system somehow. and improved by biking. hugs and feel better all.

hey kat, how are you? i feel much better, fewer episodes and lighter. biking was a game changer for me. symptoms come and no, some new ones ( heavy head and groggy in the mornings, numb arms) but all in all much improved. lysine and mannose help occasionally. there is anend to this,i now know it.

Hi Lilum,

I m ok thanks! was just thinking about you and others on this group just recently wondering how everyone is. assuming no news is good news! i m also quite good at the moment, no neurological symptoms, just still a big of tiredness that s hard to shift, esp in the evening. not done anything different, just try to be positive, and take care if myself as much as i can with everything else that s going on at the moment. please everyone keep in touch, even if you re fully recovered, wouod be nice to hear. i consider myself 90% there. well wishes to all xx

hey how are you doing these days ?