Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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First sign of Recovery

Discussion in 'General ME/CFS Discussion' started by Louie, Oct 22, 2016.

  1. Louie

    Louie

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    I have been sick with CFS/ME since 2004 and I have not had a flu or cold for the last four years (sick but never sick). Recently, I came down with a flu and cold at the same time. Since I am on a new treatment, I am curious if anyone else has found getting sick for the first time in a long time is the first sign of recovery from CFS/ME?
     
  2. hellytheelephant

    hellytheelephant Senior Member

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    Hi @Louie
    I had ME quite badly for about 8 years then got better to about 75% ( and I'm now sick again.!) I remember that I got very bad flu over the millenium new year...My homeopath told me that it was a good sign that my body was prepared to go into battle...

    You don't say if this is a conventional or complimentary treatment. It could be that the treatment you are on has 'woken up' your immune system.
     
  3. Sidereal

    Sidereal Senior Member

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    Going through something similar these past couple of days. I am sick for the first time in years, it's quite a shock. I'm one of those "sick but never sick" ME patients. I don't think I've had a cold/flu since 2010.
     
    hellytheelephant likes this.
  4. TigerLilea

    TigerLilea Senior Member

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    No for me anyways. Last January I had my first real cold in about 20 years. Over the next few months I had two more colds and a sinus infection. I'm still trying to recover from the damage that the antibiotics did. My CFS/ME has never been as bad as it is now. And I've had it for almost 26 years.
     
  5. ukxmrv

    ukxmrv Senior Member

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    For me it wasn't a good sign just a change. I have never had a remission or been anywhere near recovery. I switch between the 2 states every 5-10 years.

    There was a hope in the 80's that this could a recovery (think it was Dr Cheney) but for me personally it never worked that way.

    New treatments that lead to a cold or flu are usually bad for me,
     
  6. Louie

    Louie

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    I recently started a new anti-viral. I have been on anti-virals for 8 months without any change but this new one has resulted in the flu/cold.
     
  7. frederic83

    frederic83 Senior Member

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    Can you give more details on this antiviral? What virus are you targeting? Is this virus the probable cause of your CFS?

    Thnks
     
  8. Louie

    Louie

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    Targeting HHV6 and CMV. Started Vatrex February, 2016, didn't do anything so switched to Famvir, didn't do anything so switched to Valcyte about a month ago.
     
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Welcome to the forums, @Louie. As you can see, there is a lot of variability in our group. I hope this proves to be a sign of improvement for you.

    P.S. You are very cute. ;)
     
  10. purrsian

    purrsian Senior Member

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    I'm one of the "sick who doesn't get sick" types, ten years CFS with only two cold/flus, both in recent years. I think both have occurred at times when my health was starting to improve, like my immune system was finally starting to get back to normal. But both times, I dealt with the cold/flu ok, but then the following few months I got a little worse. Perhaps the effort of eradicating the virus was a little too hard, which then put me backwards despite doing fairly well before the infection. So for me, they are signs that I am doing well, but also a sign that I may be about to get worse as a result of the infection.
     
  11. stiffler

    stiffler

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    Hey Louie,
    I hope that it is a good sign for you. That just happened to me too. I have been dealing with this thing for four years and recently started Valtrex 2 months ago. I've been cold virus free that entire 4 years until 2 weeks ago and was slammed by a cold virus. All viruses must of kicked in because it was the worst week I have ever felt in my life. After the cold virus was conquered, I had the best 6 days (still going!!) in a long, long time. I had been getting a day here, a day there right at the beginning, then over the 2 months I would get a good day for every 5. Praying to my angels for more good days for all!
     
  12. Louie

    Louie

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    Glad to hear you are doing better. I still don't know if I am better as after I recovered from the first flu virus in four years I got another flu three days later. Still trying to get over the second flu. But something must have changed as now two flus in two weeks when I had none in four years!
     
  13. worldbackwards

    worldbackwards A unique snowflake

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    I had a brief period of getting colds in the middle of never having them for years. Sadly it never meant anything good. In fact it was usually a sign that things were getting worse in general.

     
  14. Shawn

    Shawn Senior Member

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    Would like to ask your treating CMV with potent antiviral drugs upon which evidence ? Do you have positive IGM for these viruses ? confirmed viral DNA in the blood ?
     
  15. cornwellsb

    cornwellsb

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    I am on Truvada (PreP) for almost 8 months, Valtrex 1G a day 3 or 4 months, and valcyte 450mg 2x a day 2 months. I noticed many changes within 4 weeks in eye symptoms and dizzyness after valtrex. These symptoms are almost gone. Sleep is somewhat better. I am now at 4 months for both valcyte and valtrex. Only a slight improvement in fatigue but enough that i can make it through a whole day at work assisted by vyvanse which is prescription amphetamine. Overall though I have moved from a scale of 5 to about an 8 in the last year. Targeting HHV6, EB and CMV which i tested active for. Also taking NYStatin for candida overgrowth in stomach along with probiotic suppliments which could play a part
     
    Mel9 likes this.
  16. Shawn

    Shawn Senior Member

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    Ok when you say you tested "active " for CMV my question originally was what was active marker? Positive IGM antibodies or active DNA in the blood?
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Like many of the others on this thread. I dont see getting a cold as an improvement either .. in fact all its ended up leaving me with is worst asthma after I recovered from it. (I rarely get colds).
     
  18. cornwellsb

    cornwellsb

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    Igm
     
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  19. Hotch

    Hotch Hotch

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    Hi Purrsian,

    I am one of your mob too. I can't remember getting any cold or like in over 10 years ( have had CFS 32years at varying degrees. Currently mostly house/bed bound). Why do you think that is? Do you think our immune systems are exhausted so can't mount a fight? One of my doctors said it's an indication of how bad it is in my body that they just go straight through. Not even they want to stay in there- ha! Sounds silly to me. I find your hypothesis sounds right. That it is a good sign that your body is ready to begin the road to recovery. Do you know if there is any test that has indicated why we are dif to most in this regard? Oh, just a side note: I remember reading a post where a lady got her first flu in years and said she felt better during that time than she had in years.

    I wish you all the luck in the world and really hope you are on an upward trend.

    Cheers! HOTCH
     
  20. purrsian

    purrsian Senior Member

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    Hi Hotch,

    I think our immune systems are too exhausted to fight - I don't think it's that the pathogens just go straight through but I think that we can't mount much of a fight against them. In Chinese medicine, they view the strength of a fever as being a balance between the strength of the pathogen and the strength of the body's ability to fight. So a strong immune system fighting a strong pathogen will produce a high fever, while a weak immune system fighting a weak pathogen produces weak fever and a stronger fever if the pathogen is strong (but not as strong as a strong immune system would produce). Perhaps our systems just can't mount this response due to lack of resources.

    Either that, or we have an overactive immune system and are constantly fatigued because our bodies are putting too many resources into the immune system and hence our tendency towards autoimmune issues. I'm not really sure which way to think about it, but I'm leaning more towards a weak immune system when analysing my own symptoms these days.

    I mostly just look at the fact that not getting contagious illnesses when everyone else around me does is abnormal, so then me getting the illnesses is normal and therefore means I'm more healthy overall. Regardless of what's wrong with our immune systems (if overactive or underachieve), I think that it's a good sign to become more "normal".

    I thought this might interest you:
    https://psmag.com/a-test-for-chroni...w-hint-at-its-origins-b32226cefdd1#.gniq1nmgp
    “We know that [the immune system] should shut down” after fighting off a virus or bacteria, but instead the system that regulates cytokines themselves “goes off the rails” in the early stages of ME/CFS, Hornig says. That suggests doctors could use high cytokine levels to help diagnose the disease in its early stages.

    "Curiously, though, many of the same cytokines that were abundant in the early stages were in unusually low supply after three years. That’s an observation Hornig says could help researchers understand the genesis and trajectory of ME/CFS. It could also lead to treatments specific to a patient’s stage of the disease."

    The only test I've heard of related to the immune system is currently being developed.
    http://www.abc.net.au/news/2016-03-10/chronic-fatigue-syndrome-new-diagnostic-tool/7236182

    "She said currently diagnosis was based on symptoms, which could vary widely, but the new system identified it through genetic and immunological markers."
    The article was from March 2016 and it says they need to find a commercial partner to make it. Then I guess you have all the regulations to get through. So it may still be a bit off. But having a diagnostic test would be amazing - to give us more recognition from doctors, employers and governments that we do have an actual illness, to improve the quality of future research studies by guaranteeing only people with the illness are included, to possibly directing treatment protocols if it can help understand the disease better.
     

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