COCKSACKIE B

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Hi guys,

Been struggling with my health since Nov2013. Prior I was a triathlete and marathon runner for many years. I am 34 years old. I have been diagnosed with 'post viral fatigue' syndrome. I am looking into the cocksackie b virus. Has anyone been tested for this that has PVF/chronic fatigue/ME ?

I am going to test myself. I don't think I can do this on the NHS or can I ?

The cocksackie virus seems to effect the heart muscle and I have been saying for the last month only that everything else feels ok I just have this uneasinessin my chest. That my heart is not pumping as strong as before and that is THE reason I cannot run and find everyday tasks alore more difficult and stressful As for stress I can only handle he bare minimum and work is certainly out of the question. Basically my life at the moment is over. Endurance athlete 6+years prior Nov2013 now I can maybe walk for an hour a day, 2 at a push with consequence. Thanks for reading. Maybe coing together we can find an answer. I am naturopathically trained, so this is a real challenge. I've read about CFS, but experiencing it is completely different.

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  • Posted

    And has anyone with CFS/ME tried low dose naltrexone to help ? Looks very promising.
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    • Posted

      Anti-depressants for CFS is utterly ridiculous in my opinion. Being depressed as a result of being unwell is normal. We want to treat the root not the symptoms.
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  • Posted

    David,

    So sorry about your illness. I've had CFS for quite a few years. Best piece of advice I can give you:  don't push it. I did, and made myself worse.  This is not like your typical situation, where by exercising you can gradually build up stamina. At least, not in my experience. I mention this because you sound like you're a high achiever, being a marathon runner. By the way, walking for an hour a day is a lot. Trust me on this. If you take care of yourself and rest, chances are good you will recover, without doing anything. A lot of people with CFS just get better. 

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    • Posted

      Thank you Jackie. I totally agree about CFS versus normal person exercise, we CANNOT push ourselves to get well, believe me being a stubborn 'indestructible' endurance athlete i tried this ALOT in the beginning and feel i have only made the initial problem much worse. High achiever ? That's me, where my best is never good enough. Although this experience is going to change all that !!

      My eyes have been bloodshot all week, and i find they are slower to react, so ANOTHER problem. I just want this nightmare to end. Good luck with your CFS. If i find anything useful i will re-post. I've found taking chaga mushroom supplement helps with energy levels and relaxation. Mushrrom Science do an immune builder formula which i also find very helpful, in some way i feel better taking it. I am convinved PVF/CFS is related to a malfunctioning immune system, likely hit by an unknown virus. I'll let you all know how my cocksackie B/echovirus test goes.

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    • Posted

      diet is best keep a note what u eat and how long if any sleepy .

      sugar/fissy pop  is what causes me knock out - i cut down what i can.

      diet little meal 4-6 to 2,000 - 2,500 cals (so weight should stay same) .

       

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    • Posted

      So I have some further thoughts on non-drug approaches. i think meditation/mindfulness practice is very important. Helps deal with anxiety, depression, and any other "mind" issues. Also, acupuncture and Chinese herbs can be helpful for some.
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    • Posted

      sounds like u going on about possible cbt . this helps somes never for me on the cfs  - did help with depression @ the time.

      Chinese herbs??? local chippy meals . ;-) .

      can try  acupuncture nhs will do 6 visits and that it .

       

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  • Posted

    Peter: Meditation is not the same as cbt (cognitive behavioral therapy). I tried CBT--didn't work for me. But I think both CBT and meditation are just 2 possible techniques that can be tried. One size does not fit all.
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  • Posted

    I'm taking low dose naltrexone for CFS. I posted a topic of its own on it: "Medication is available". 

    Feel free to get back if you have questions after reading the topic. 

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  • Posted

    Hi David, I put this response on another feed so it may sound a little like I'm answering someone else's question, but I'm pasting it onto here as I have found a way out of my PVF, and the same info may prove useful to you.  One point which might make our cases similar is that I was always doing tons of sport, always, basically relying too heavily on my adrenal gland (and when I had tonsillitis my body appears to have had a trauma and shut it down, which led to the PVF). In my experience you can't and shouldn't take any medication for PVF. The virus that caused it is over (anti-biotics will have killed it), your body has had a trauma, and you are now experiencing the effects of that trauma.

    So this is my post:

    Ok this is a serious thing, but only because finding the right path to recovery isn't really through your GP, so finding ways forward is challenging and takes time. Really you have to do this yourself, because you probably look fine and sound fine, and it is only within yourself that it is clear there is a problem). Everyone is a little different, but this is my story.

    I had a virus in Sept 2013, and as a result CFS/PVF set in. GP was nice and gave me doctor notes explaining to my work that I needed rest, but this didn't help me recover and feel more energetic. I was initially very tired just trying to go to the shops, however over time I was determined to go back to work, but I felt there was a point each day I couldn't get beyond. And all I could do was work. Get to work and then get home to recover from work. I took lots of vitamins, B complexes, 1000mg of Vit C, stopped drinking caffeine, and ate REALLY nutritious meals. But it only got me so far. It was almost like part of my energy system had stopped functioning. I was into lots of things, and trying everything, and after 4 months I went to a homeopath. This was key.

    Working with her I was able to share thoughts on how my body was responding to certain things, and we agreed on the idea that I had been burning the candle at both ends too much prior to falling ill, and when I fell ill with the virus my immune system hadn't been properly able to deal with it. And it had panicked and suffered a trauma. (Basically re-wiring itself to be dealing with an emergency). In my case(which apparently is very common), my adrenaline was worn out and my body had stopped using it.

    So to fully beat this illness you have to deal with the fact that the body is sending the wrong types of signals to deal with certain scenarios. An example of this is that at the beginning of the problem, when I missed a meal and became hungry, my body mistook hunger for a sign that I was running out of energy, and panicked and made me very tired, so I would rest and stop using the last bit of energy it thought I had.

    I went to the homeopath in Dec, I was then able to do my first 'evening activity' after work in late Jan. I started running in Feb (this is key, you need to exercise to help the recovery) and started playing football again in March. I played a full match two weeks ago. I know it will take me more time, but here's what you need to do:

    Stage 1: Accept that this is a deep rooted issue that will not be solved overnight. If you have CFS you have knocked your body processes and most likley your immune system out of balance. And those who depend on you must accept this too. If you try to do too much you will not recover properly. You have to physically recover from the incident which caused it, and then 'pace' yourself back into doing the things you want to do. Simple smile

    Stage 2: Rebuild immune system. If you don't focus on this you won't get past a certain point. Each day I take a pro-biotic (Bio-Kalt) to help with digestion, a sports vitamin for the nutrients, a vit C 1000mg (because it is vit c that transports all good things around the body), magnesium in liquid form ('Liquimins' - it is basically food for the cells in your immune system), and zinc in liquid form. (Magnesium, zinc and Vit C basically are your immune system - if you have these you're halfway there).

    I also take some homeopathic remedies that are particular to me. I take two adrenal supplements, so support my adrenalin.

    And SUMA (i found this one myself and I know it has been super effective). Suma root powder (available online from herbal shops). I heard this had been used to treat chronic fatigue. So i got some and heated it in a pan of water. Having a mug per day. After about two days it changed my recovery. It has been used in many cultures older than ours to re-align bodily functions and hormones. If you have CFS you have knocked your bodies processes out of line, this will encourage re-alignment. For me, it got my adrenaline gland and immune system talking to each other again.

    Stage 3: You must keep expanding your horizons (but at your own pace). I've been through the cycle of not wanting to leave the house. Thinking that if I do this I will feel really ill for the rest of the day. When I first went running I slowly jogged for 100 metres, and I had the entire weekend afterwards to recover and see what would happen. 3 months later and I am playing 45 minutes of football and feel really fine. (Maybe a little tired the next day, but I structure my day so I don't have a long day on my feet the day after).

    And you must push yourself a little through the pain barrier. Just do it gradually, walk 100m further, stand for 10 mins longer. And give yourself time to recover after. It's really important to exercise as this gets the body functioning fully. It also helps the body to burn up stress. For me keeping stress levels low has helped.

    I went on some forums when I first felt ill and it was all doom and gloom, with frustrated people who'd been ill for a long time. For the NHS people with this condition aren't a priority – there isn’t a major understanding of it in the UK (lots of people thinkjust have a cup of tea and you’ll be fine). You really have to take responsibility for your recovery. I am having a mug of hot suma with my lunch whilst I write this, and then I'm going out for a bike ride. 4 months ago I was struggling terribly and thought that wasn't possible!  smile

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    • Posted

      Thanks Mark. I was never prescribed any anti-biotics though. In fact i have been prescribed nothing from say one. I believe i now have an eye infection. I believe we are similar with regards to the exercise levels prior to illness, my job was also very heavy warehouse work, looking back i think it is the combination of then that has threw me over the edge. Homeopathy i have heard from others is very helpful, i shall look into this with my GP. I have a diploma in naturopathy and am well versed in diet and supplements, i can't say much in this regard has helped me. Have been focusing on the adrenals, but maybe ut will take longer thani think. At the moment i feel lost and my life is falling to pieces. Relationships strained. I agree about exercising and was managing to run for 20-30mins slowly up until 4 weeks ago where i am now so much more weaker physically and moreso on the inside so can only walk. My mind just stops me. My passion in life is to run, swim, bike etc and even if i force myself with all my will i still cannot do it. I am seeing a haemotologist the next few weeks, back at the GP tomorrow, want more tests ran that's for sure. Honestly though i'm really getting depressed. I used to feel so strong now i feel so weak and frail. I'm like my life is almost over, i'll just lie on the bed one day and waste away as i have very little support and am laregely on my own. I plan on re-setting come May and starting a new protocol of supplements and diet etc I'm still not 100% convinved i have PVF so i need other things ruled out, as i said my focus is not good at the moment. I'm picking up infections really easilly which sets me back when i feel i might be progressing.
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    • Posted

      And massive congratulations on your progress !!!

      I saw a TCM practitioner and they said i had depleted my kidneys and had to rebuild using acupuncture and herbs. It was £80/week though so on hold. I know the TCM theories being naturopathically trained and curious by nature. I feel i need to be well on my way out of this by the summer, that's the goal. I've been taking mushrrom sciene immune builder and also rhodiola and cordyceps. I always took these when i was active but maybe just not enough, lord knows i was pushing the my body to it limits regularly.

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    • Posted

      Hey Mark how much suma were you taking ?

      AFter reading your story i went out and managed a 20min run. Rather difficult but i can physically do it. Prior ro PVF i could run a 1:15 half marathon and sub 3 hr marathon, often 20miles would be a warm up session. Oh boy...

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    • Posted

      Suma - 1 teaspoon per day brought to the boil. But there's lots of recipies on google.

      Don't push yourself too hard... you may need to slow down the exercise. If your adrenal gland is depleted from years of overuse it will no doubt put it under further strain if you're trying to keep fit when your basics aren't functioning properly. Slow down in the short term, will help you in the long run.

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