The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Diagnosed at 25 with CFS losing all hope

Discussion in 'General ME/CFS Discussion' started by Elatan, Nov 5, 2016.

  1. Elatan

    Elatan

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    Been lurking on these threads for a while and wanted to share my story. My mom has had CFS since I was about 5, I don't really remember her ever being "sick" so I didn't really understand CFS. She was lucky in the fact that she was able to go back to work for about 10 years, and have a normal life, until she gave birth to my younger sibling and had a flare up of symptoms, since then she has been on disability. She is now probably back in a remission state, but still has her bad days (very rare). I was always really interested in CFS and I actually decided to quit my job and go back to school in order to apply to medical schools. I thought everything I've seen would help make me a better doctor. I've seen what my mom has went through with doctors not believing CFS even exists and I saw a way I could potentially help. Then disaster struck in my own life.

    I have always been more of a low energy person but never thought I had true CFS. I was working full time while going to school full time and felt AMAZING, I thought I was crazy to ever think I was low energy and was excited to begin med school this past June (2016). I unfortunately went to a wedding out of the country in March and got horribly sick to my stomach, which left me weak and suffering from bad fatigue, acid reflux, and dizziness for about a month or two after the onset of the illness. The symptoms started to lessen gradually so I figured I was finally over this stomach bug and I moved across the country (NY to CO) to begin school. It was all downhill from here - HORRIBLY dizzy, fainting, low grade fever, so fatigued my limbs felt like they were made of metal, I couldn't drive, just overall unable to function because of what was going on. We all (my mom and boyfriend) thought it was maybe related to altitude adjustment. I saw an altitude specialist who said all of those symptoms could be from altitude, so I reluctantly had to withdraw from medical school and move back to NY. Of course I was crushed to give up my acceptance but tried to remain positive, maybe it "wasn't meant to be" at that school and I would reapply and go elsewhere next year. A bump in the road but I could live with it. Now I'm back in NY and even sicker than I was.

    My mom has been going to Dr. Susan Levine for almost 20 years now and so she immediately brought me there. She said I likely have CFS, put me on Valtrex and said I should improve. I don't know if it was just a coincidence but as soon as I started the Valtrex I got MUCH worse. I felt like I had the flu and pneumonia after starting it, my joints hurt so bad I couldn't walk up and down the stairs, I was bedridden for about a month. I've been off Valtrex for about two months now and I am slowly improving. I began Nexavir cream shortly after stopping the Valtrex. I guess it's helping? Or it's just time. I've been basically housebound for about five months now. I know that it's technically only post viral right now and not CFS because it hasn't been six months, but if I'm counting since getting sick in March I'm well past that point. I'm becoming extremely depressed - I fear everything I worked for is a thing of the past and I have to accept I will likely be unable to go to medical school, let alone hold a full time job, with CFS.

    I'm only 25 and thinking about living the rest of my life like this is really crushing. I have no house, no job, no career, no kids. My life hasn't even began. Dr. Levine seems to think I will "bounce back" in six months and be able to go to school, surprisingly she told me she has patients with CFS in medical school (interesting right??) but the way I'm feeling I can't even imagine ever being able to handle that. I guess I should listen to her because she sees a lot of CFS cases but I am having a lot of trouble seeing the light at the end of this tunnel. The thought of giving up or even changing careers (again) to something less demanding is something I can't wrap my head around. Anyone who is in my age bracket how have you dealt with this? I know I should probably get on an antidepressant but I'm depressed because I feel my life was stolen from me and I'm terribly sick, it's not unwarranted and I think I'd be crazy not to feel this way after everything. Any advice would be really appreciated. Knowing other people are out there going through this is really helpful, but I can't help but want my life back. Even though my mom has been through this I can't help but think she had ten more normals years- you had a husband, a kid, and a career. I guess being sick and not having that makes it easier for me to rest and get better, but it still is really hard for me. I'm hoping this nexavir gives me my life back and I will look back on this one day and barely be able to remember being this sick. I apologize for the long post, I wish everyone on this forum a speedy recovery, happiness, and good health in your future!
     
  2. lnester7

    lnester7 Seven

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    Welcome. I have done a lot and still have CFS. I get remission periods and bad to bed ridden so I have been all over the place.

    A lot of normal plp get issues, live is never worry free, so you have to think what is the best life I can have w CFS. Also adjust expectations to achievements.

    Since CFS I have learnt to play 1+ going on second instrument but I do something to grow personal and professional everyday. So today my goal was to learn let's say read a letter on one of the lines let's say. And a music perons would laugh at that but I know one line more than yesterday today.

    So I guess my point is, is it harder and difficult but you can achieve as a fulfilling live as you can get. Is all a matter of forgetting what plp consider normal progression and have your own pace and goals, find what is your passion and a drop is more than what you had yesterday attitude.

    CFS years are loong so you would be surprise at what you can achieve a drop a day.

    I know is hard and brutally almost impossible at times. But it is also possible to lead at somewhat normal live. Hang in there and best of lucks!!!
     
  3. hellytheelephant

    hellytheelephant Senior Member

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    Welcome @Elatan I was first diagnosed age 22 and now I am 48. I have the perspective of life lived with ME ranging from about 30% of function to 75%. It has been a difficult path to stumble and crawl down at times, but no one's life is without challenges. There are things my health has made impossible, but I have also done things that many people don't get the chance to do. The limitations have shaped me into a person who doesn't say 'one day I willl...' 'cos during the healthier times I just get on with doing the things that matter.
    .
    Don't let anyone ( particularly yourself) limit your future. This illness is completely different for everyone and like everyone else-sick or well- we can only control so much.

    It is SO hard to be ill when you are young- it feels as if life has hit the brakes just at the point you were preparing to accelerate. Your friends are, on a whole physically well, with little understanding of what being ill is like.

    I completely agree with @Inester7- you have a passion that is absorbing and worthwhile, take a small step towards that every day you can. Life is not all or nothing...and if you feel you can help people then life will show you how you can do that.

    Hx
     
    Never Give Up, Sushi, merylg and 3 others like this.
  4. Elatan

    Elatan

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    Thank you so much for your kind words. It's comforting to see others who have gone through this and are still pushing forward. Exactly as you said, just at the time when my life is about to accelerate all of a sudden the brakes are on full force. I'm hoping that I'll improve and hopefully see more days where I'm feeling stronger, but I feel my friends and family have this expectation I will be back to normal soon, which is proving extremely difficult to live up to. Most people don't understand what CFS/ME is and don't really understand how I can be sick for this long. I struggle with explaining what I'm going through but I guess that will get easier with time.

    I can't give up hope on doing what I'm passionate about even if I have CFS. I hope my body will respond to the rest I'm trying to give it and slowly crawl back closer to my normal functioning. Thank you again for response :)
     
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  5. hellytheelephant

    hellytheelephant Senior Member

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    .You are welcome :)
    ..I should also have added that the two friends I have who have also had ME: one is a freelance fine art conservator, and the other works at management level at an international law firm- she has worked in Hong Kong, New York and is currently living and working in Dubai!
     
  6. halcyon

    halcyon Senior Member

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    @Elatan has Dr. Levine ordered enterovirus (coxsackie B and echovirus) serology tests for you?
     
  7. Elatan

    Elatan

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    Definitely not echovirus and just coxsackie A according to my blood work copies. I was thinking this all started from whatever stomach bug I caught out of the country, but she seems to think it's from my elevated EBV (she tested IgG nuclear antigen - high and IgG VCA - high, IgG early antigen came back in normal range) and HHV6. I'm seeing her next week and could ask for these. Is their another possible treatment/outcome for an elevated enterovirus serology test? Or just another piece to the puzzle? Thanks for your help!
     
  8. halcyon

    halcyon Senior Member

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    Coxsackie A viruses have never been associated with CFS. I would hope Dr. Levine would know this.

    That is likely and it's more likely to be an enterovirus rather than EBV. As far as I know EBV does not cause appreciable GI symptoms, at least not in proportion to the other stereotypical symptoms of acute EBV mononucleosis.

    High EA IgG does not prove anything. Per the CDC, 20% of healthy people continue to produce EA IgG antibodies for years after infection. It's also normal to continue to produce EBNA and VCA IgG antibodies for life.

    There are no FDA approved antiviral drugs for enteroviruses. With that said, there are drugs that can have some effect and there are over the counter substances that can help as well.
     
  9. Shawn

    Shawn Senior Member

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    Why would she put you on Valtrex being an anti herpes drug ,what findings or evidence did she base this decision on?

    For enteroviruses , IVIG could be useful to not only balance the immune response but to provide extra immunity and defense against the entero viral infection.There is a drug available outside of the US for enteroviruses it's called plexonaril and is quite effective indeed.
    https://en.m.wikipedia.org/wiki/Pleconaril

    According to extensive research by various experts including Dr Chia the entero virus reaches the brainstem by traveling up the vagus nerve via reverse Axonal transport and created a low level or latent infection in the brainstem tissue,this infestation elicits immune responses which create damage (mostly reversible) which causes brainstem dysfunction,which explains many systemic symptoms.

    It's also believed in others the virus is cleared but an incorrect autoimmune response perhaps due to molecular mimicry is initiated which continues disruption of the cns .

    IVIG is a good try because it can deal with autoimmune issues ,balance a response and create more attack and defense against a viral infection also ,but I would suggest you infuse IVIG slowly and with good pre meds,I made the mistake of letting it be infused extremely fast and without pre meds and had a bad reaction.

     
    Last edited: Nov 6, 2016
  10. taniaaust1

    taniaaust1 Senior Member

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    I was 26 or 27 and at college due to having a medical interest when I got sick. I had to give up my studies half way through.

    Unlike yourself I was a sole parent of two young children when I got sick. This thought that some still get to have children may make you envious but it was a nightmare for me. It was horrific as my eldest who was 9-10 years old at time had to become a child carer of me and also look after he younger sister. As an adult she's moved far away, probably cause she lost years of her childhood having to take care of me, it makes me sad I hardly ever get to see her as she moved away.

    My other child doesnt even have a relationship with me now as an adult as the ME/CFS affected our relationship hugely when she was a child which left her feeling unloved. She been suffering chronic depression from a child (she developed that after i became very sick) .. she's adult now. I was stuck in bed when she was a young child unable to even hug her as touch or being touched hurt me to much.

    Without children, you can focus on yourself more and hence have more chance of recovery, you do not have to have to stress of having children trying to have to care for you or the stress of having destroyed relationships of children once grown due to ME/CFS affecting their lives through you.

    Try to hold hope that you could get a recovery (i had a remission for several years after 3-5 years of ME). Unfortunately I then caught another virus going around and got ME over again. I think the younger ones have more chance of recovery. Look after yourself. You will always need to do so even if you get better as this illness always leaves one at risk.
     
  11. Elatan

    Elatan

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    Hi Shawn - thanks for your response. A lot of doctors use antivirals like Valtrex/Valycyclovir or Valcyte for treatment of CFS to try and lower viral loads in CFS patients. Dr. Martin Lerner was a big proponent of this and has a lot of published research on this method with a lot of success. Dr. Levine has been doing similar research on its use and success in many patients with high EBV/HHV6. I became much worse after beginning Valtrex and stopped within two weeks of taking it. To put into context prior to taking Valtrex I was able to spend 4-5 hours out without PEM. Immediately after beginning I had basically what felt like the worst flu of my life. Dr. Lerner believes this to be a herxheimer reaction and a sign the medication is working but if I got any worse then I was I couldn't handle it mentally. This reaction also can last a long time I could not go through any worsening of symptoms at that point it seemed extremely counterintuitive to me. To be honest I'm not even yet back to how I was before starting the Valtrex and I wish I had never taken it. My body seems to have reacted horribly to it and completely flared up all of my symptoms.

    Dr. Levine also tried IVIG which I also had a worsening of symptoms (fever, stiffness and painful joints, worsened fatigue) after my first round. I did not have pre meds either. I will have to discuss with her pre meds or trying IVIG again. To be honest I'm not sure if I will try the IVIG again after this poor reaction. Have you had much success with it? Or did you also stop after having a poor reaction? At this point my body seems to be extremely sensitive to anything put into it, which many patients with CFS seem to go through as well. I'm kind of leaving my body alone other than Vitamin D, C, and multivitamin and nexavir (which is a transdermal version of immunovir). Mentally I can't handle any more worsening of symptoms to the point of being bedbound again, at this point I'm basically housebound. I have no one to take care of me in that state and I can't do it to my body again.
     
  12. Elatan

    Elatan

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    I'm so sorry for everything you have been through with your children, as a single mother, and going through the ups and down of ME. It is truly the worst kind of pain to go through and I feel for you.

    I know I'm many ways I am lucky to have gotten this young, improving a chance for recovery. I completely agree that not having those responsibilities does allow me to have the freedom to get better as well, and I hope I can make somewhat of a recovery.

    Unfortunately my mom has had ME since I was 4, so I have been the child in this situation as well. During her flare up then I missed out on having a healthy Mom, mostly cared for by my grandparents and sitters who thankfully were around to help. Then again at the age of 12 after the birth of my younger sister, I became a child caretaker for both my sister and my mom. Then my parents divorced and I had to leave college for a semester to come back home and help my mom out again, caring for my sister, during another flare of her symptoms. ME has provided me with a roller coaster of a life from a very young age.

    I never felt hurt by my mom for this, especially now going through ME myself I understand how much of a struggle she went through to take care of me when she was too weak to even stand up. I finally now understand my memories of her crying to tie my shoelaces before school, (such a strange memory to have) as when she was at her sickest with ME.

    She is basically the only person I can talk to who understands how hard ME is. I am beyond thankful to have her (although I'm not thankful we both had to go through this). I'm certain your children know you did the best you could, take it from someone who knows!!! Thank you for your kind words.
     
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  13. Shawn

    Shawn Senior Member

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    First of all when you say they use those drugs to treat "viral loads" did you have any tests that indicated you have a problem with herpes viruses ?if so what were the results.

    I avoid IVIG like the plague now it caused me an acute 5 day encephalitis which on top of my ME really dropped my baseline badly,before it I was able to walk around HK with my camera bag and shoot for a few hours not feeling normal or great but I was functional and able to be free of most adverse events ,after that reaction I've never been the same ,my cns took a 2nd pounding and some new auto antibodies may have been triggered ,I think in simplest terms to people with sensitive reactive immune systems which I have IVIG is literally asking for it , 25 bottles of human blood derived albumin protein is given which alone can causes bad reactions in people ,never mind the fact your adding half a million IGG antibodies from 20000 different sonors ,it's really asking for it,and by lord did I get it! My body treated it like a major severe infection which you know for people with CFS ME or similar Neuro immune diseases can cause cytokine storms and a relapse of disease.
    Honestly in hindsight I wish I had done things differently if I had the chance I would have got 6 session of plasmapheresis followed by steroids and a pre medicated slowly infused course of Rituximab,I'm sure then things would
    Have been different as obviously it's easier to improve from an already functional baseline like the one I had before the IVIG than the worse one I have now ,that's just common sense.

    If you insist on trying IVIG make sure it's slowly infused no matter how patient the nurses are and make sure you get pre meds and a ganruntee from the doc that in the case of a bad reaction to immediately give you plasmapheresis to filter the IVIG out.Dont make my mistake I paid badly from it.

    Give pleconaril a try it's designed for enteroviruses but wait for serologic confirmation of entero viral infection ,if it's in the brainstem a CSF study for enterovirus DNA should detect it I had a lumbar puncture done lately please find results below its always good as you never know what else they will find in there as i discovered.

    Your symptoms deserve a CSF evaluation and don't let any other doctor tell you otherwise.
     

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  14. Shawn

    Shawn Senior Member

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    Forgot to mention if your sensitive to things being put in like me,then why not try the opposite and take things out , plasmapheresis is safe and worked well for me about temporary ,it could be longer for you though ,I had Zero side effects ,all they do is filter blood and get rid of toxins and proteins and antibodies and put your clean blood back in with sos saline mix ect ,it's worth a try it was very effective for me and as I said no reaction at all or even a side effect..

    eofo
     
    Elatan likes this.
  15. Daffodil

    Daffodil Senior Member

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    @Elatan well i got sick at 22..now almost 46 and i really have no job house career kids etc! it is awful so i hope you get good treatment early.

    personally, i disliked Levine a lot but I saw her only once. I ended up finally being helped, after many many years of struggling, by Dr. DeMeirleir. I have been on an antibiotic protocol for years.

    if you feel worse on valtrex, maybe its doing something. it didnt make much difference for me but my viral antibodies were never that high

    xo
     
  16. Elatan

    Elatan

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    Thanks so much for your response, I'm so sorry you've been going through this for so long. I am honestly not the biggest fan of Levine after all of this either, but I understand she's following the protocol I guess she thinks works. I will look into Dr. Demeirleir ASAP I would really like to get another opinion. Thanks for your help.
     
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  17. Daffodil

    Daffodil Senior Member

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    @Elatan DeMeirleir finds Lyme in a majority of patients.

    Levine told me I would not get more than 10% better (15% if lucky) because I had had it so long. She was really flippant about it too and didn't seem to care less. She was very erratic too, sometimes being nice in email/phone and at other times, snapping at me rudely. I was really sick and after my appointment with her, i almost jumped off the subway tracks in NYC, where I had travelled on my own. Probably one of the worst days of my life - and I have had many.

    I also saw Dr. Galland in NYC who was super nice and very thorough in his testing. However, he could not help me even though he tried for a long time.

    Dr. DeMeirleir works out of Reno and Belgium. I thank God I went to see him.
     
  18. Hip

    Hip Senior Member

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    Is there any chance you coincidently might have caught a virus just as you started Valtrex, and though you attribute your flu symptoms to Valtrex, they may have come from a new virus. If you were attending Dr Levine's office, presumably you might have come into contact with other sick ME/CFS patients in the waiting room.

    When I first first caught my ME/CFS-triggering enterovirus, I was infecting other people I socialized with for at least 18 months afterwards, on account of the fact that this virus left me with a chronic sore throat, shedding viral particles in the saliva.

    Having said that, one of the rare side effects of Valtrex is flu-like symptoms (ref: 1), so alternatively, it could have been the Valtrex causing your symptoms. It's just that I have never heard of any cases of ME/CFS being triggered by Valtrex.


    Though if Valtrex was the cause of you present health condition, possibly that raises a note of optimism, because perhaps you don't have true ME/CFS, but just some temporary ME/CFS-like condition triggered by Valtrex, which you may hopefully get over. You say you have improved slowly since stopping Valtrex.

    On the depression side, could this depression be neurologically triggered? Quite a few ME/CFS patients have depression as a comorbid symptom, and they often rationalize it in similar way that you did (ie, you are depressed because you feel life is stolen from you); but I suspect that in many cases the depression is neurologically caused, and then post-rationalized with such explanations.

    So you could consider trying some antidepressants.

    For my comorbid depression, I find Spanish saffron 100 mg has some benefit (this randomized, double-blind, clinical trial found saffron to be as effective as Prozac). I also find the drug treatment of very low dose amisulpride effective not only for the depression, but also for some ME/CFS symptoms too.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    :( that's so sad. thanks for sharing.
     
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  20. Cheesus

    Cheesus Senior Member

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    I'm 26; I've been sick since I was 22. I have a few things to say about your (our) situation.

    1. There is a better chance of remission in in the first few years. One of the biggest mistakes I made in the early years was that I tried to constantly push through everything. I simply did not get enough rest and tried to always put on a brave face, but I believe that by pushing I was damaging my prospects for recovery. This is even more irritating as I was always on an upwards trajectory in the first couple of years but I had a few big crashes from pushing really hard and my ability to improve evaporated. If you really focus on pacing now rather than trying to push your way through then you might regain a decent level of functioning if not remission.

    2. Help is on the way. There are a number of sad stories from people on this thread and the wider forum about being ill for most of their lives: 20, 30 or even 40 years. But times are changing rapidly. These poor souls were living through the dark ages of ME, but you and I are very fortunate to have developed the illness in an era where ME is being taken seriously by the scientific community. Lipkin reckons he can get to the bottom of this in 3 to 5 years time (if he can get the funding). The history of ME is not a good indicator of the future of ME. We will not have to make wild guesses at what treatent might help. We are not destined to live for decades with a forgotten illness. We are not doomed. You will be able to marry, have kids, get a good job and more.

    3. The early years were the most emotionally draining. I can quite vividly remember lying in a ball on the floor of my kitchen crying my eyes out. I can't remember what preceded that moment, but I was suddenly overcome by my situation and slumped to the ground in tears. I lay in the foetal position wailing like someone recently bereaved (and in a way I was bereaved). But things have gotten much easier over the years. The illness does not seem like the heavy weight that it was back then. I am quite content with my life in a way (though I will never lose sight of my goal of health).

    4. It seems like your life has come to halt, but it hasn't. This may seem like a dreary prospect - after all it this entire point that life seems like it is slipping away that makes this so painful - but the point I am making is that the life experience you get from this disease is like nothing else. How many people have to face something like this during their lives? Fortunately it is quite few. The upshot of the experience is a rock-solid personal philosophy that can endure any of the shit life flings at you. Having been through what I have been through, I know that when I come out the other side of this my relationships with others will be enhanced and my knowledge of the human condition will have deepened enormously. Getting this sick really strips away the nonesense that most people concern themselves with in life. I now know that the only really important things are fresh air, good health and other people. It can be unbelievably tough, but a valuable life lesson nonetheless.
     
    Last edited: Nov 7, 2016

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