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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Thurs Nov 10 - Dr Antony Komaroff on "Hot Areas in ME/CFS Research" - Solve webinar

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Nov 10, 2016.

  1. soxfan

    soxfan Senior Member

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    I don't want to talk down Dr. Komaroff because I know he has done a lot of research and this is his passion...BUT I was a patient of his from 2011 till 2012 and I will say he was not a good doctor. I worked very hard to become a patient as he was not accepting any at the time.
    I wrote him a letter basically begging to be seen and he did agree. The first appointment he spent about an hour with me. The only tests he did was the standard basic blood testing...ones that I have had many many times. He also did a quick physical exam.

    About a week later I received in the mail a summary of his findings which were high titers to HHV-6 and EBV but he said in his opinion they were not active. The Only treatment he offered me was injections of bovine extract daily. I agreed and spent the money on the syringes and extract. Well first off the stuff smelled like rotting dead pigs...it was horrendous and it burned and stung something awful. I only let my husband give me two of them it was so painful. The medication was called Nexavir.

    Anyway I let him know it wasn't going work for me. He offered me no other treatment options. I saw him twice more and each visit was FIVE minutes long. He gave me no other testing like for POTS...or any of the other major problem of CFS. He was a terrible doctor for me and I was extremely disappointed in him. I never felt like he cared about my suffering or that I ha did bee sick for 7 years when I saw him.

    I hope he continues his research and maybe find a cause or diagnostic test that can help. I honestly just have no respect for him as a doctor as I had a terrible experience with him...
     
  2. trishrhymes

    trishrhymes Senior Member

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    Hi, @soxfan. You have aroused my curiosity about Nexavir, which I hadn't heard of.

    I see there's a PR piece on Nexavir, and I also found a blog with more details.

    http://phoenixrising.me/treating-cf...e-syndrome-mecfs-nexavir-formerly-kutapressin

    https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/

    I'm sorry you had such a disappointing experience with Dr. Komaroff.

    I no nothing about him, so can't comment on whether he's a good doctor.

    However, I think, to be fair to Dr. Komaroff, you did not feel able to give the treatment he suggested long enough to find out whether it would work for you. I gather from reading about it, you have to try it for quite a while to see if it works, and lots of the patients find the injections painful. The success rate cited in the articles sounds quite impressive, though not many proper double blind trials seem to have been done. I see there is also a gel form which I guess goes on the skin.

    I guess at the time, this was his only drug treatment for ME, so if you didn't want to continue it, for perfectly understandable reasons, he maybe felt he had nothing else to offer you. And as we know, sadly, there are really no treatments available that work for everyone. All doctors at the moment are effectively experimenting, since no treatment is proven.

    I don't know how long ago this was. Maybe at that time no-one was testing ME patients for POTS. I'm not trying to excuse him - you clearly had an unsatisfactory experience and I sympathise.

    Sorry everyone, I've just realised this is off topic for this thread.
     
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  3. Sing

    Sing Senior Member

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    It seems as though Dr. Komaroff has been more interested in teaching and research. He is certainly a clear communicator. He knows what the studies are, what they show, what the facts are and where they might be going. But I have observed that he does not go beyond the facts. He is conservative. He is always clear about what is a fact, what is in the process of being established as fact and what the research may suggest, but he won't jump ahead.This makes him a reliable person for the big institutions to work with, who don't want to go out on a limb.

    I think he occupies a valuable niche in our world, but he doesn't do it all. If he were more patient oriented, he might have an active clinic, been training new clinicians and encouraging new ones to get into this field. Maybe he has but I don't know of such people in the Boston area. Still, at least he is focussed on the research and pursuing that in collaborations with others. Until the research can make the picture clearer, clinicians can't do a whole lot beyond the symptomatic help and trying to prop us up--or the cautious ones like him aren't willing to. That is my impression but I don't know for certain.
     
  4. soxfan

    soxfan Senior Member

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    @trishrhymes ...I actually did end up with Nexavir gel. My husband is a pharmacist and he was able to compound the gel for me. I can't actually remember how long I was on it but Dr. Komaroff felt it had been long enough saying I should have had results.
    He did and still does not believe in long term anti-viral treatment as he would not prescribe any to me.
    He is a genuinely nice man and truly seemed to be interested in helping me at the first appointment.

    It was the future appointments where he only spent five minutes with me that were disappointing. I mean I read about all the things Dr. Klimas tests for and he did t mention any of those things to me.

    When you have been sick for so long without relief it is disappointing when someone who has done so much work on research in the illiness...just doesn't seem to care about you.

    Anyway...I am still searching for answers since I really have NOT ever had an official diagnosis of anything...doctors just guessing. At this point I will except whatever I have. I am going to an Intergrative Physician at Duke in February. That was the earliest appointment.

    Just saw an ID doctor at Duke and he said my symptoms and rashes have nothing to do with Lyme or a tick born illness...and so the fight continues.
     
  5. soxfan

    soxfan Senior Member

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    @Sing ..Dr Komaroff did have an active clinic in Boston at Brigham and Women's Hospital. He did his research at a separate place. He stopped seeing patients a few years ago to focus on research.
     
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  6. Sing

    Sing Senior Member

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    @soxfan I am sorry you're having such a frustrating time with doctors, and at institutions, where it seems like they ought to be able to help more. Would you ever be able to travel to Miami to go to Dr. Klimas's clinic?

    A while back, if not longer ago, I largely gave up on doctors, traditional and alternative. Some have helped with this or that particular symptom or aspect. Mostly I have had to figure things out and advocate for myself. At this point, I am not willing to go through a big, gigantic workup somewhere with lots of testing and expense, when I don't believe anyone has much more of an answer. But am watching the research closely these days, and gaining hope from it. FINALLY, more are studying the pathophysiology instead of just looking for the elusive, singular "first cause". I have thought for decades that they were wasting time, money, hope and lives on that stubborn and fruitless pursuit.

    I don't have hope in the sense that I think I will get my former life back, as I am too far down the road to get that much of it back, but actually feel as excited for other people getting help, younger people, and the newly sick, as I would be if it were myself. I want US to turn the corner and am going to be taking great pleasure in that!
     
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  7. soxfan

    soxfan Senior Member

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    @Sing ...I have basically given up on doctors too . Although I will go to the appointment I have scheduled at Duke in February. Then that will be it for me. I know what I have even though it's never been official. I know what I need to do in order not to crash and I know I will never have my old life again.

    It is too late for me I feel and I will live out my life with this illness. Even after 12 years it is still hard for me to accept that I will never feel rested again...I will wake up tired...I will slog through each day in a haze of tiredness and fatigue. I won't run again ...on and on. I don't think I will ever accept it...

    I know what got me here and it is because doctors didn't believe me in 2004 that something was wrong as I had become ill overnight. All they had to do was listen to me and give me a course of antibiotics for Lyme and this wouldn't have happened.

    Okay no more pity party today. It's beautiful here in NC and I have to enjoy this warm weather we still have.

    I could get to Dr. Klimas if lucky enough to ever get an appointment but I still feel it would be of little help....even though I hadn't high hopes that Dr. Komaroff could help me I realize now there probably wasn't much he really could have done...
     
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  8. Sing

    Sing Senior Member

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    @soxfan I remember loving the mild falls and winters of NC and the gorgeous early springs with so many flowers and scents. I went to college there, without a car, so walked everywhere. It wasn't my culture but the place offered much beauty.

    3 years into ME/CFS I found a doctor as knowledgable as any then, and she prescribed me trazodone, which finally anchored my fractured sleep, and low dose cortisol, which helped lift my energy during the day so that I didn't always feel so tired. It was like water to a desiccated plant and I could feel my balance back. I still could not make exertions and crashed for abnormal periods if I did, so life wasn't restored in its entirety, but it took me out of the constant struggle with fatigue. (I've written about the cortisol on other threads at other times, if you or anyone else is interested. Won't repeat here.) That good doctor left her practice soon afterwards, so I had a job finding others, but did succeed in getting help at least to bring up the circulating, effective levels of my hormones, for basic support. With any medication or supplement, however, I always stopped it if it caused me any bad effects. My goal was always better balance and comfort in my body. Living in a state of torture is unacceptable! While I will never do the 100 yd dash or the 5 yd dash anymore, I really am not suffering. Still my blood pressure is so low I have to kneel down in stores and sometimes squat at checkouts. I sit down or hang upside down almost whenever I need to, causing social consternation for others, but none of this is as troublesome as those early years of struggling with exhaustion all the time. I am an advocate for discovering any remedy for balance and comfort in the body, and peace of mind....
     
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  9. duncan

    duncan Senior Member

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    @soxfan , Duke for advice on TBD's? It's a superb medical institution to be sure, but so is Johns Hopkins, and I'm not sure I'd rush to them for unbiased TBD information.

    Sorry for the sidebar observation; I do not wish to detour the thread.
     
  10. soxfan

    soxfan Senior Member

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    @Sing ...I was on cortef for many years due to my saliva readings. In all honesty I don't feel it made me feel any better. After four years I was given the ACTH ? Test where they make you sit with an IV line for an hour and see how your adrenals respond.
    My cortisol level started low but when stressed my adrenals apparently were able to respond appropriately. Then I was weaned off cortef which took a year. I actually don't feel like I have low energy. Mine is more of a constant fatigue in my head...mentally. I can actually go out and walk miles even when I feel like this whic is basically daily.

    I have also tired many sleep meds to no avail and had two sleep studies. I am able to easily sleep with half milligram of Klonopin but never feel refreshed and ready to go in the morning.
    I have no hope that this will ever change...
     
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  11. soxfan

    soxfan Senior Member

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    @duncan ...I live 15 miles from Duke so that is where my doctor sent me. I know ID doctors are not the best when it comes to TBD but I thought I would give it a go.
    In honesty I agree that the symptoms I have now are not tick related...

    I have seen Dr. Horowitz in NY for two years 2007-2009 and am still sick with something so I can't imagine a doctor having more knowledge than him???
     
  12. Sing

    Sing Senior Member

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    @soxfan That is interesting about your fatigue being mental rather than physical in the sense of not wanting to move, etc. Low and slow brain? I wish they would hurry up with more brain research and learn more of what might be going on--though I understand we aren't all the same.

    As an aside, that ACTH test doesn't test for the particular problem with cortisol I have had and many of us have, which is that the hypothalamus and pituitary don't seem to be signalling appropriately to get the adrenals to provide its hormones as needed. This is a separate problem from anything wrong with the adrenals per se. The main ways the doctors have tested cortisol levels and the adrenals forever has focussed on the adrenal gland itself and not on what the effective levels of hormone are in the blood throughout the day. That requires the appropriate signaling from the top, the HP of the HPA. Of their standard tests, the only one I know that is even close to useful is the 24 hour cortisol in a 24 hour urine collection. But that won't say what the level is at any particular time, of course. I add all that for any readers here for whom it might matter. It sounds as though you are definitely off cortisol now and don't seem to need or miss it.

    I too went through a good spell being treated by a Lyme doctor, a year and a half, and it also didn't help. Made me worse. So I left and returned to my baseline. Never did think I had Lyme anyway, but this doctor did as he tends to see everyone with ME/CFS symptoms as really Lyme affected. I don't agree with this. Yet, it was worth really checking out and trying.
     
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  13. soxfan

    soxfan Senior Member

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    @Sing ..I agree with the ACTH testing as I never felt it was worth doing it. I don't feel that cortef would be of any use to me plus I have Osteopenia so being on a steroid would not be good for me anyway.
    My doctor always felt the symptoms were due to Lyme...I will never be sure if I had it or not. My first symptoms seemed like it could have been but over the past 12 years my fatigue has become more mental in nature..I have a hard time driving due to the concentration it takes...can't socialize with more than a couple people..talking is tiring...shopping is a killer...etc...

    I only had the saliva cortisol testing I believe and the weird thing is that I had three saliva tests in a five year period and they all were almost identical...even though on two of them I was still taking cortef and the third one I was not.

    It will be interesting to hear what the Intergrative Doctor has to say in February. Have no idea why the wait is so long to get in..ridiculous!
     
  14. Sing

    Sing Senior Member

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    I have a slow brain and low mental energy too, but not all the time. It has a range from subnormal to low normal in terms of energy and pace, though still with cognitive and memory problems. I think some people take stimulants like Adderall or Provigil, or just use coffee strategically. I am in the last category. Provigil didn't feel good to me and I would be afraid to take one of those stimulants like Adderall or Ritalin. That doesn't mean it couldn't be a good idea for some people.

    Actual brain speeds have been shown to be low in ME/CFS, but what is causing this and what might the best treatment be, ???
     
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  15. Sing

    Sing Senior Member

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    I used to think that the slow brain might be caused by low dopamine, by damage to the area of the brain that makes dopamine, which is around the brainstem. I think this is the RAS, Reticular Activating System. I read that enteroviruses--maybe other kinds of viruses too?--can come up in the blood stream and empty out in the brain stem area. This is what happened with polio and even non-paralytic enteroviral infections. The viruses came up to the brain and caused damage in the back there. The hypothalamus is in that same neighborhood. I wondered if that were the cause of the slow brain and weak signalling via the HPA axis? Richard Bruno who was head of the international organization for post-polio syndrome discussed this in The Polio Paradox. He wondered if CFS, at least in some cases, might be a form of post polio syndrome. That book gave me a model for understanding how the neurological effects could have been caused by a viral infection. In terms of CFS it was hypothetical, but in terms of post-polio syndrome, he probably had the facts.
     
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  16. duncan

    duncan Senior Member

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    If you feel confident you are cleared of any TBD's, certainly Duke has the reputation of being a good medical facility.
     
    Last edited: Nov 25, 2016
  17. soxfan

    soxfan Senior Member

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    @duncan...I am not certain about anything. Been sick for 12 years with no real diagnosis. I have seen the best...Dr. Horowitz and Dr. Komaroff and many others in between. Yet my body is totally dysfunctional and just plain weird.

    I have no idea what the reasons are if it was Lyme or a viral attack in 2004 that left me like this. So the search continues until someone can let me know what happened to me and help me improve my quality of life even if just a little bit...

    So no I am definitely not confident...
     
  18. soxfan

    soxfan Senior Member

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    @Sing ..I tried provigil once long ago and it did definitely give me energy but then when it wore off I would crash terribly...it wasn't worth it.
    I think my brain just runs out of energy quickly and it makes me very tired. It's like it only has a certain amount and when I use it up it doesn't not get replenished,

    Which is so different than when I do physical stuff. I can rest for an hour and feel better but with the brain fatigue once it happens I am done for the day and useless...

    I have no problems with remembering...thinking...memory...it's more of a energy issue and depending on the mental activity I can run out of it pretty fast....sometime in the store I can feel the energy just draining from my head...by then it's too late and I have over done...sometime it can be quickly and other times longer. I just never know.
     
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  19. Sing

    Sing Senior Member

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    @soxfan That is really interesting--the specifics of your brain symptoms.This sort of precise understanding could help aware researchers better sort out what could be going on. I wonder what a researcher like Dr. Jarred Younger would say or the Zinns, for example....
     

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