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post viral experiences

Posted , 13 users are following.

david59662
david59662

Hi, my name Is David, I am 34 years young (feel old, like 94) and prior to becoming unwell Nov 2013 I was a keen runner and triathlete for about 6 years. 3hr marathon 1hr20 5k swimathons.

So the start, Nov2013 I just started to feel 'off'. But ok I felt maybe a cold or something so I will still go to work, and train and work through it. But of course this does not work. I had been studying naturopathy whilst holding down my physical warehouse job. So felt I had adequate knowledge to fix myself because I had done this before with problems like depression and inadequate digestion. But it seemed nothing I did worked. Christmas time was utterly horrendous and I literally felt like the life was being sucked out of my body and I was dying. I had deep penetrating 'stiffness' in both legs. This lasted about 2 months before it subsided. Tests from the GP have shown up and down low neutrophils and total WBC. Iron levels are on the high side and being tested for haemocromotosis, B12 is high also. Recently WBC has achieved normal range and jumped up quite a bit but I still do not feel well. The fatigue is the most noticeable aspect, unrelenting. I eat supremely well, I juice organic vegetables, take high quality supplements and where I would advise everyone still do this with PVF I would also advise that this is not curing my condition. This seems a very deep form of damage. The energy is used to get from such things like juicing is no longer being made available, I am considering parasitic infection, as I had been swimming in Bulgaria July and also had done some open water swimming in the UK last year as well. So yesterday I did a few hours of walking but my enjoyment for life is not present, I am really suffering today, so tired. I'm staying with my father, I have no job and feel utterly useless compared to my old self. The past week I have noticed the lymph nodes in my right groin are slightly swollen, so another concern. Does anyone else get this ? I am currently seeing a reputable local TCM practitioner in the hope of a breakthrough. This condition is costing me a lot of money but I am determined it is a process of elimination, at the moment the NHS is too slow for me but the GP's have been very good but feel rushed with 10min appointments. Trust me if I find a breakthrough I will re-post. Oh, also getting poor circulation in hands and feet with the right hand always looking more coloured(red) than the left which is often pale. It is intermittent. Anyone else get this ? I'm looking for people to share experiences so I can compare. Thanks

2 likes, 52 replies

52 Replies

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  • wtrboy
    wtrboy

    Posted

    David,

    Were you prescribed an anti-biotic? If so, what kind?

    Cheers,

  • david59662
    david59662

    Posted

    No anti-biotics.

    Today I am just absolutely out of my feet. I mean seriously 34 years 'old'.

  • david59662
    david59662

    Posted

    I'd also like to ask what do people think about my train of thought with regards to parasitic infection ?

    Can they do this to you ?

    I had been swimming in the black sea Bulgaria in July (horrible holiday) and also some outdoor swimming in Scotland during triathlon event.

  • david59662
    david59662

    Posted

    Do you have any neurologic issues? Twitching of mucles, pins and needles in feet and hands, high heart rate upon standing or palpitations?

    Thanks but NO (at present) to these questions. I am aware of naturopathically orientated. IF it is mitochondrial dysfunction, then I should be cured by now. I did 2 months of the highest quality energy supplements, (corvalen)D-ribose, Q-10, magnesium, reduced l glutathione, alpha lipoic acid with high dose bioavailable multi vitamins. Greens drinks, no refined sugar, no wheat, no dairy , basically this was my diet before I got sick and I have just tried to super charge it with mitochondrial boosting supps but to no avail. Did I do it long enough ? Maybe not. Exploring other options at present with TCM. If that does not work then I may have to resort back. TCM view it as kidney exhaustion, so they have to re-built, nourished with acupuncture and herbs, we'll see.

  • alison44235
    alison44235

    Posted

    I have had M.E. for a long time. I was diagnosed in 1992, but am sure I had it 9 years longer than that. I am exhausted all the time, fuzzy head sometimes, pains in legs and soar throat sometimes. The more I do the worse I feel. it is a job keeping going. i go to bed every afternoon and to bed early on a night. I am a textile designer, give talks and workshops all over the country, which is very exhausting, but do not intend to give it up, in one way it keeps be going or a reason for keeping going. I am doing a lot less talks etc at the moment. I carry on making my wall hangings and do a lot of sewing and designing when in bed.

    Today I don't feel like doing any work at all and just can't wait to go to bed this afternoon. I must make myself get out iin my studio, have two commisions to get on with.

    All the best with your M.E. and I hope you recover quickly. It is a horrible desease that most people and Doctors do not understand, which it make its all the more harder for us who have it.

    All the best Alison

  • david59662
    david59662

    Posted

    I am also looking for thoughts on poor circulation in the hands and feet. Hands with me show the right hand to be far more redder than left, circulation seems intermittent, sometimes both hands are similar in colour then sometimes they look like completely different hands from different people.

    Also does anyone get a restrictive sensation with regards to their heart ? I have felt just recently that it's not beating as strong as it was. It's like it is being suffocated.

  • JerseyKaz
    JerseyKaz

    Posted

    HI David, sorry to hear of your probs. I wasn't as fit as you when I got CFS but was playing racket ball twice a week and felt on top form. It started for me in the muscles around my ankles, then affected my lower legs really badly with deep aching pains, extreme fatigue before everything else etc. I had 4 years of tests before diagnosis, including mri scans with injections of dye to check my circulation as my feet kept suddenly going cold! My hands also are affected, mostly my right. I know you say you eat well, but sometimes it can be an absorption issue (you mentioned having probs with this earlier). Have you had your magnesium and Vit.D checked?

    It could well be a post viral thing? Might be worth mentioning the parasitic thing to your doc as this would need specific testing requested.

    Good luck! cheesygrin JK

  • david59662
    david59662

    Posted

    Hey JK. Thanks a lot mate, people's support is really meaningful to me. I never thought in a million years I would be in this position. God willing I will get out of this. Interesting we had the same thing going on with the hands. I guess the absorbtion thing warrants further investigation. Thanks. Today I got the GP to do some bacterial and parasitic testing, so get the stool sample sent away Monday. I'm also being tested for Weil's disease although surely if I had it all this time I would be dead, although I did consider myself extremely fit. I continue to try all sorts of supplements. I have found medicinal mushrooms help, just within the last few days. The relax me and I know from studies they are tonics to the immune system. I'm certainly a work in progress and I plan on digging deeper to get to the root of all this.

    4 YEARS of tests ? Wow. I have an appointment with a haematologist, up to 12 weeks though ? C'mon. Not sure what can come of that though ? Worth it ? Take care mate. Like you prior to becoming unwell no joke in the 6 years of training it was the fittest I had ever been 1:15 half marathon and the most I was enjoying life, and now this ? Arrrggh.

  • jacquie14742
    jacquie14742

    Posted

    I also get the swollen lymphs and find this a complete mystery...I get the fatigue and like you was very fit before, i got ill about 14 months ago...playing tennis at a club twice a week, zumba, walking club at work - working 4 days a week for a corporate company and also looking after 2 small kids and running a home...I was also 34 when this hit

    I have see so many practitioners and spent loads of money, again GPs been great, but slow, she is now getting fed up of finding whats wrong..I do get the twitches / jerks neurological symptoms, have had MRI and all clear...Mine seems more viral to be honest and fatigue along with joint pain and mouth / throat problems is my worse symptom....

    I am currently seeing a homepath / acupuncturist / physio to try and get mobile again...my muscles are pretty weak and i have lost weight...i have so much energy yet feel so drained...my vit d / calcium all my levels were high, i seem to absorb things well....i too tried mitochondrial test of d - ribose and co enzyme 10 for months, no improvement

    I am on amitriptyline to help me sleep and to help a bit with the pain, this is my crutch and does seem to help

    Another thing, i got tested for adrenal fatigue and it showed up as exhaustion...i did a 4 point saliva test...so i now attribute m fatigue problem to ths...you can recover from adrenal fatigue and its a common 21st century syndrome, with stress of life, working, over training, diet etc...have you thought of getting tested for this?

    I feel like you, want to try everything and i KNOW i will get to the bottom of it...stick with the juicing, i have heard great things about juicing and this can heal a lot of ailments

    Let us know how you get on

    Take care - Jacquie

  • jacquie14742
    jacquie14742

    Posted

    ps - i get cold hands also and poor circulation and high heartbeat on standing...this can be something called POTS have you looked into this? Whats a TCM? Just intrigued by this

  • david59662
    david59662

    Posted

    Hey Jacquie, thanks. Damn lymph nodes have been driving me crazy.

    In the beginning did you just become off like me ? Never fully ill ?

    So you're very much like me. Some people say I have burnt myself out, I think with my lifestyle I would work hard and train hard, no question and also was forever the perfectionist. I am noticing as I am not at the gym in 4 months I have lost half a stone of pure muscle and feel even more terrible because of that, like I'm now below 11st. At 6ft i feel now a stiff breeze would blow me over whereas before I felt as though I could run through a wall. Well juicing I credited as really saving my life from deep depression when I started it 5 or so years ago but now it's not having the same effect. That's why I was thinking parasites as they apparently steal a lot of the goodness from the diet. Adrenal fatigue, yes I am looking into this. I need to get tested, thanks. I'm always moving things in the right direction, for me only 4 months into it things are moving faster and I will figure this out and repost when I do. How are you treating your adrenals ? Oh same as you with the coq10 etc I felt no benefit. I guess I am like you in feeling DRAINED. My body is not weak it's an internal malfunction. Frustrating. Try some medicinal mushrooms, chaga is really good. Take care.

  • david59662
    david59662

    Posted

    Oh, TCM is just traditional Chinese Medicine. So acupuncture and herbs. I'm quite well versed on herbs and used them during my training to PREVENT adrenal problems. But maybe I just didn't take enough. Acupuncture is not cheap at £55 for 25 mins and £25/week on herbs. Plan on doing one month and seeing how it goes. Not looked into POTS. but will now.
  • david59662
    david59662

    Posted

    Has anyone used homeopathy for PVF ?
  • jacquie14742
    jacquie14742

    Posted

    i got told i had post viral fatigue when i went to see ENT last year to check out these lymph nodes...mine are all out under my chin and neck, they are still there 14 months on! Yes i was like you, never really ill, but didnt quite feel right...i think mine was a combination of burnout / hormones from birth of second child / and a flu jab which I had a month or two before getting this full blown..i was doing WAY too much

    I know what you mean about feeling weak and losing muscle tone, and about a breeze would knock you over...im working to try and build this up...Desparately trying to put weight on and working on this at moment...

    I use a homeopath and acupuncturist...I think its helping! Im on my 4th session and she really knows her stuff...Its her that said i possibly have CFS / ME and not PVS or Fibro like doctors thought...

    My adrenals - i was taking an adrenal cortex supplement...for 3 months, it made me really sick and its the one supplement I havent been able to tolerate...so i came off them...now I am just trying to eat well, rest, vitamin c, vitamin B5 are most important for adrenal fatigue - its a waiting game and im not very good at waiting, but i am gradually feeling stronger and i am having better days

    I had to give up career as the exhaustion was killing me...i now just run my kids around (they are 3 and 5) so at a very demanding age...and do a part time work from home job....this is my limit at moment and I accept that...I dont exercise or play tennis anymore and i mourn that, but i am walking every day and stretching and happy at these small accomplishments at moment

    Parasite infection - could be a reason for this....would the stool analysis be able to tell you more?

    There is always an underlying reason for this type of illness, its just finding the cause and treating it..this part can take the time...But i will never give up...Im currently having full thyroid work up T3 and T4 as i have a lot of hyperthyroid symptoms i demanded this from doctor as wanted to rule this out

  • wtrboy
    wtrboy

    Posted

    Hi Jacquie,

    How is adrenal fatigue diagnosed?

    Thank you,

    • haylee93669
      haylee93669 wtrboy

      Posted

      Hi,

      I was diagnosed with post viral fatigue in October 2014 following a bad case of glandular fever. Took them 2 years to figure out what it was and tried to convince me I was 'depressed'. In the end my partner paid for me to go private to see an endrocronolgist who did a full pathology report and synathan test which flagged it up.

      I'd be interested to hear how many of you have recovered and improved? as I'm still in the throws of getting better after having a relapse.

      Haylee x

    • david59662
      david59662 haylee93669

      Posted

      So Haylee what was the problem ? Kidneys ? Interestingly my chinese medicine doctor says my problem is low kidney energy. Thanks
    • haylee93669
      haylee93669 david59662

      Posted

      I was just told that the Epstein Barr virus and glandular fever keeps resurfacing which is what caused the post viral fatigue. Also my adrenal glands are pumping out adrenaline at the wrong time so in the mornings I feel sluggish and tired but when I go to bed I'm wired tired (if that makes sense) my heart pounds and I feel anxious. All my organs are in good working order from the tests, my digestive system is very sluggish. I started seeing a Nutrionist a year ago who has literally turned my life around as before now I was in a much worse state! I take a combination of vitamins which seem to have got me to a level of being able to function. I did find when I was signed off work for 4 months I actually felt like a normal person again.

      So the thing that worked for me was rest rest rest, completely changed my diet (have lots of tips here on food), a truck load of vitamins and walking (only on the days I felt I could do something) unfortunately due to me being over ambition and taking on too many work hours I've had a small relapse.... Frustrating as hell but I determined to get back to the level I was!

      If you want to know the vitamins I advised to take I can list them for you. It's costs a small fortune but they worked wonders for me. Unfortunately from what I can tell rest is the key factor and getting yourself a councillor, all the pent up frustration, guilt, sadness and worry has a massive impact on your recovery.

      Hope the above makes sense, I did a lot of rambling!

      what has he suggested to do to kick start the kidneys? Do you have a clear diagnosis? Usually post viral fatigue is the result of an infection of some sorts.

      Haylee

    • david59662
      david59662 haylee93669

      Posted

      Hi Haylee, really pleased for you, you are on the mend, in a better place. My TCM doctor has prescribed me with various herbs for tonifying the kidneys, liver etc my specific diagnosis is kidney yang deficiency, i looked it all up, makes perfect sense. I had 2 years of extreme stress pre CFS. My TCM doctor explained the stress caused my bosy to weaken, i depleted my kidney yang (yang is defensive energy) which then allowed chronic infection which then has depleted my kidney/adrenal system, liver is also sluggish, spleen is a little damp. I have to say i have fely better only 2 weeks taking the tea, more energy, i have been told around 6-8 weeks to be feeling decent. So i agree with what you say, i can't say i have had much success with vitamin and mineral pills. I eat very healthilly always have been an atlhete pre CFS. My diagnosis is Western terms is adrenal fatigue, but TCM treatment aims much deeper to fic the root. I'm in a good place for the first time in what seems forever, been unwell 17 months. Absolute hell. Another thing i had been doing 3 years pre CFS was alot more raw foods and raw juices, TCM doctor says this has been very bad for me, raw foods are too cooling and have damaged my yang energy, which is warmth, so i have to warm my body up with proper cooked diet and herbal tea.
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