CFS UPDATE

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Hi all,

Just an update for those following my health. Saw the haemotologist today. My bloods were all clear, no auto immune problems. WBC and platelets significantly improved from last time. Above normal parameters, this was from blood 2 months ago, would have liked a new set of bloods.

I'm still unwell though, nowhere near normal but have had gradual improvements, sleeping and mobility. Haemotologist is insistent judging by my WBC that i am 100% post viral. The sobering part came when she said i am looking at potentially another 12 months for full recovery. She said she does see alot of PVF and i fit the bill but was confident i would recover.

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  • Posted

    I also meant to add that the haemotologist said i should now tell my GP to refer me onto infectious diseases or 'ID' as she said. Does anyone know the waiting time on the NHS for ID specialist ? What a journey.
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    • Posted

      Hi David, it's good to heat that you're on the road to recovery! Slowly but surely is progress! A year sound like a positive result for a full recovery, the 8-9 months that I've had this seems to have flown - you'll fit and well before you know it! I was referred to the Tropical and Infectious Disease Unit in February/March - I think it took around 6 weeks to get an appointment and I have follow up appointments every couple of months. Although it was really helpful for me to go there and have further testing (and get clear results from some really scary infections!), it hasn't really brought about a solution. I'm currently waiting on a referreal for a department that deals with Post Viral/Chronic fatigue - fingers crossed they can put me on the right track!
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    • Posted

      Hi emma

      my hubby was referred to occupational therapist for m.e./CFS from his m.e./CFS specialist and put on two drugs to help with CFS symptoms ..

      the OT comes to the house once every 4 weeks and she is excellent . At the moment working on sleep hygiene ... Getting to sleep 

      cognitive behavioural therapy for stress and for looking at recovery and how to recover by pacing , so how to say no or adjust how you do things ... 

      Example you get invited to a BBQ you don't go as it's too much you feel down left out or you go rally yourself up feel exhausted leave after a couple of hours are really ill for a week. She explained if u go plan to sit in the car for a while shut your eyes relax . Then return when u can cope . Stay until you feel you have had enough not until you are exhausted ... All practical stuff . But really tailored to your life ..excellent and very positive she knows she will get you back to  having energy again ... So hope you get the help too . And the drugs have stopped his constant headaches.. 

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    • Posted

      Thanks Sally, I hope your husband is doing well. One of the most frustrating things about this condition is definitely being invited to places, but then having a body that will not function properly! I definitely need to learn how to pace, I'm hoping being sent to the specialist will be a breakthrough at last! Best wishes to you both.

       

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  • Posted

    Hi David that's really great news that all your bloods are normal and you are well on the road to a full recovery. Sorry but can't help you with any ID professionals. Take care, Paula 
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    • Posted

      Thanks Paula. I'm on my way (hopefully) but i am working damn hard for it. None of us can ever give in, i have went from triathlete/marathon runner to almost being in a wheelchair, i'm sure many less fit and active people that would have been it for them. I keep telling myself to keep going, like when i race, and to NEVER give up no matter what !
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  • Posted

    Hi David,

    What's PVF?  Is it Post Viral Fatigue?  What were you suffering from originally?  Good to hear you are slowly getting better, best wishes to you smile

     

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    • Posted

      Hi Stolz, thanks.

      Yes pvf=post viral fatigue. I was unwell in the beginning with viral like symptoms. I did some private testing for cocksackie A+B, enterovirus, echoviruses but negative, i was also negative for epstein barr. I guess cytomegalovirus is a possibility as over 70% of us carry it and i was going through an incredibly stressful period of my life when the illness hit. I may never know the exact cause, maybe stress. The only thing we can do is hone the bodies immune system with proper diet and some supplements, really like mushroom supplements with beta glucans.

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  • Posted

    I'd be a bit cautious with some of the claims she is making. I'm afriad that some people do not recover from PVFS, and unfortunately, some doctors think it is acceptable to not be honest about this in order to promote 'positive thinking'. Hopefully you will be someone who recovers, but if you want to make informed decisions about your life, it could be worth trying to gain access for some real data on recovery rates. My understanding is that most people recover in the first 12 months, but a significant minority go on to suffer long-term problems. Data is often not great for this though. There was a recent study on PVFS and West Nile Virus just published (only the abstract is available unless you have an academic account): http://online.liebertpub.com/doi/abs/10.1089/vim.2014.0035
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  • Posted

    Hi David,

    Did your GP refer you to the haemotologist or did you go private?

    Cheers,

    Bob

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    • Posted

      Hi Bob, this was done through the NHS. I've had two appointments with the conclusion post viral, recovery another 6-12 months away. Now being referred on to infectious diseases, likely more intolerable waiting to see someone. In the meantime i do EVERYTHING in my power to get well, diet, supplements, herbs and acupuncture. So far progress is really slow.
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    • Posted

      You were originally diagnosed with CFS right?

      I'd like some extra tests done to rule out certain things but got the impression once you'd been diagnosed with CFS options became limited on the NHS.

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    • Posted

      Hi bob, my diagnosis from the beginning was post viral fatigue syndrome and it continues to be so. I feel chronically fatigued with no other symptoms other than the fatigue so to me CFS would be more accurate by the GP says PVF. I have to give credit to my GP's and the NHS. I have been treated exceptionally, with the only drawback the waiting to see specialists. And also in Scotland i believe there are no CFS/ME specialists. So your'e kind of on your own with this.
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