The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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losing my minds ability to think

Discussion in 'General ME/CFS Discussion' started by candie, Oct 19, 2013.

  1. candie


    Lancaster, Pa
    My deepest thanks goes to all of you who have overwhelmed me with kindness and support. I have read all your posts 3 times and wrote down a list for us to follow. Its tricky tho because i can not communicate with Billy, so he just has to trust me. His story: mono , age 20, in college, soccer athlete and could have gone pro, could not finish his degree with 1 semester to go, raw throat, swollen lymph nodes, exhausted but couldn't sleep. Came home, couldn't work, just barely maintained CFS, saw Enlander in Manhattan 3 times, then crashed from neurological overload September 4th, 2012 and has not been out of bed since Nov, 2012. Hyperacusis and intolerance to light make his young life unbearable, isolated, constant sufferage and suicidal. Family doctor for 8 years has made no attempt to visit even though I went to see him personally 3 times and begged him. I have found what I thought were great avenues, and all became dead ends. Some of you will know Billy as Grapefunk on PR. Again, thank you,from my heart, you have given me hope, you are all truly a blessing and a treasure to me! All my best to all of you , always!
    Beyond, merylg and Valentijn like this.
  2. SOC

    SOC Senior Member

    Speaking as a mother of child of the same age with ME/CFS and as a patient myself, I'm begging you to find a way -- as difficult as it may be -- to get your son under the treatment of an ME/CFS expert. Dr Enlander is a good one you've already seen, so that might be the best path. Ask Dr E if he will continue to do phone consults after he's seen your son again. If so, you could have phone appts all year and only have to go in once.

    Doctors cannot continue to treat a patient they have not seen in a year, so you have to find a way to get to a specialist at least once a year. All our best ME/CFS specialists are very, very, very busy so you will not find one that will come to your son. You won't even find many (any?) GPs in the US who do housecalls. Unfair maybe, but that's reality.

    Not getting appropriate treatment at this stage in your son's illness could leave him severely impaired for life. Ask around PR and you'll find many people in that situation. :( A young, previously healthy young man in the first few years of the illness has a much better chance than most of achieving full functionality if he gets aggressive treatment promptly. Leave it another couple of years and his chance for recovery drops severely. You really shouldn't squander this opportunity.

    I know it is incredibly difficult to travel to a doctor in your son's condition, but it will be ten thousand times more difficult for him to live the rest of his life in his current condition. Better some extra suffering now than a lifetime of the same suffering and worse.

    We traveled 6 hrs (each way) by car to see our specialist. In the earliest days we were wrapped in blankets, noise-cancelling headphones on, eyes closed, laying down in the back of the van. We used a wheelchair for moving to and from the car. We stayed in a hotel and crashed on the beds except for the time we were in the docs office. It was a very hard trip, but well worth it because we both got much better.

    My daughter is fully functional, although she still has to take a number of meds and supps. She graduated from college, got engaged, and is currently in graduate school. She would not have been able to do that if we hadn't gotten her aggressive treatment relatively early. At the time we started seeing the specialist she was just getting worse and worse with no sign of recovery.

    It was very hard to make the trips to see the specialist, I won't deny that. It was also well worth the effort and trouble to see our daughter get her life back. I'd do the same, and more, again in a flash to prevent her losing her future to this illness.
    Beyond likes this.
  3. Shell

    Shell Senior Member

    candie I wonder if Dr E. would have some ideas and he could prescribe. Your biggest problem at this point, it seems, is you couldn't access antivirals or anything much as your GP is behaving so appallingly!

    If there's an ME support group near you, there might be recommended local GPs as well. I know that's a long shot, but it might be worth a try.

    My heart goes out to you. I know what it's like to see a child very very sick and it's awful.

    Can I suggest some communication ideas? It's stuff I used in the days I worked with children with serious disabilities many of whom were deaf.
    Simple stuff like putting a cup in his hand meaning "do you want a drink?" or a heart shape to mean "I love you" If he can learn even five or six basics, especially "i love you" that might help with the suicidal side of things. Even though I am sure he knows you love him, we are human, and tend to need to hear the words. As he can't - he can feel them.
    It's a tiny thing - but it might help both of you.
    If you think that might be useful I can give some more ideas.
  4. Beyond

    Beyond Juice Me Up, Scotty!!!

    Murcia, Spain
    I honestly can´t help with what your son is going trough (although the advice of SOC seems spot on).

    I just wanted to tell you that you are an amazing mother. My mother and father (or any family member for that matter) did not and won´t come into forums or the Internet for me, although I don´t have those severe symptoms and they try to help somehow. I don´t know what would happen if I had them either. I hope sincerely that Billy improves, the earlier he gets treated by someone experienced and knowledgeable the better.
  5. ebethc

    ebethc Senior Member

    does DHA repair or strengthen the blood brain barrier? I've also read that EPA is anti-inflammatory, and that DHA is good for "healthy structure & function of the brain" but nothing w better detailed OR the info is too technical... I'm wondering specifically about blood brain barrier, but it seems to make my sinuses & eyes feel better instantly..

  6. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I have not investigated this in any detail myself. Its possible. I am just not sure. You would probably have to do a lot of searchers on Google Scholar or PubMed to find the answers, unless someone here already knows. What is likely is that some DHA is needed for blood brain barrier integrity. What I do not know is how much is enough. It might be a small amount, or larger, and there might be different barrier strengths depending on DHA content. I wish I had a more definitive answer. However its also likely that EPA might decrease inflammation that can lead to disruption of that barrier.
    ebethc likes this.
  7. ebethc

    ebethc Senior Member

    I think they're both good, however, I've experienced a new effect taking DHA-EPA in a 2:1 ration vs taking the reverse ratio... The DHA had a noticeable, immediate effect on sinuses and eyes...
    alex3619 likes this.
  8. HowToEscape?

    HowToEscape? Senior Member

    @candle. Those are core symptoms of ME in the severe phase. It’s like watching yourself die, except it’s in microslow motion.

    If you do stumble onto a treatment that works for you the cognitive blackout will be relieved somewhat. I have read that it does not seem to be caused by permanent brain death, but as a cascade effect of the autoimmune problem.
    If anyone suggest that you try shaken water or standing on paper circles, feel free to kick them in the head until they stop scamming you.

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