Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Progressive M.E.

Discussion in 'General ME/CFS Discussion' started by Mariah, Jun 12, 2016.

  1. Mariah

    Mariah Senior Member

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    Would like to hear someone more knowledgeable`s thoughts on this:

    I have had M.E. for about 8 years. I got gradually sick, and cannot link my onset to one particular thing, although I have many things that made it progress like infections and a broken ankle with two operations. It was after the accident/operations that my muscle weakness set in, but I had had weird symptoms also before that. In the course of about a year and a half, I had progressed enough little by little to have fully developed ME. The problem is, the progression won`t stop. I am still progressing 8 years later. Often, when I get a new or progressed symptom, it stays forever. It may vary in intensity, but often it also stays in the intensity it came. I don`t relate when people say "oh, I had that symptom for about a year, and it went away". It never goes away for me, i.e. loss of skin sensation, loss of smell, muscle weakness, nautical vertigo, visual snow. Have had every test known to man many times, so I know that it`s nothing else.The last year, it has progressed in an alarming rate, getting worse by the weeks. I am severely depressed and scared at the moment, feeling really hopeless about my situation. I am scared that this form of ME is untreatable in every way, that I will get worse till I am extremely severly ill, and also I find myself questioning if it`s really M.E. I have, since "all" I hear about are relapses and remissions while I almost only progess.

    Are there any type of knowledge, written or otherwise, about the progressive form? Are there such a thing as progressive M.E.?
     
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  2. lnester7

    lnester7 Seven

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    I always thought I had the remitting / relapsing type. I do believe we can have progressive form, but I think that we have something using up our good stuff (amino acids and vitamins). As soon as I added the right supplements I saw the progression stopped (and I treated the viruses I had reactivated).

    I know doctors say if you eat right you do not need anything extra but In my case the gut inflammation cause that I didn't supply my body with what it needed to even function. So if you supply your body with the nutrients (doing whatever you have to do) it wont get so bad.
     
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  3. Justin30

    Justin30 Senior Member

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    Have you had a paraneoplastic panel done?

    Have you had testing from a ME/CFS Specialist?

    This is where I would start and hopefully if you havent had that panel done or testing through an ME Dr. I would start there if it is an option.

    I hope you get some answers.
     
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  4. Mariah

    Mariah Senior Member

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    @Justin30 What is a paraneoplastic panel? Depends on what you mean by ME Specialist. I have been hospitalized at the ME center where I live, and they say the same thing as the neurologist who gave me the diagnosis say: They think I have ME.
     
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  5. Justin30

    Justin30 Senior Member

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    A paraneoplastic panel screens for autoantibodies to that cause neurological issues and many other issues with the body. This panel is associated with small cell cancer in several areas of the body but can also exist without cancer. It can present exactly like ME in some cases with similar symptom overlap.

    http://www.mayomedicallaboratories.com/test-catalog/Overview/83380

    The panel is done by the Mayo Clinic but also in Canada, US, UK, etc.

    A ME soecialist will do a thorough workup of all know viruses, bacterias, parasites that may be reactivated. As well as the state of your immhne system and other testing as well. They will also provide treatment protocols based on findings.

    In Canada there are probably 2 experts.

    UK has one Dr Myhill.

    US Dr. Chia, Petterson, Montoya, Klimas, Kaufman, etc.

    Belgium/US Dr Kenny De Meirleir

    There is also one in Germany I forget his name.
     
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  6. Mariah

    Mariah Senior Member

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    I googled and read a bit about it @Justin30 . Is your opinion that it can`t be M.E. since it`s progressive, or just check other things to be sure? Not sure if I did these tests during my diagnosis, or not. Are they blood tests?

    I was a patient of De Meirleir for a little over a year, but it did nothing for me so I`m not anymore. I am also on Rituxan at the moment, but don`t seem to be responding. That may be why I feel extremely hopeless at the moment. May try Cyclophosphamide, but not sure if it will help much. Trying these two things made me form an impression of myself as "untreatable" and hence doomed to just getting worse. So just wanted to know if there actually is such a thing as progressive M.E.
     
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  7. lansbergen

    lansbergen Senior Member

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    Mine was progressive to the point I was dying. Then I started to take an immunemodulator. That slowly reversed it.
     
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  8. Mariah

    Mariah Senior Member

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    @lansbergen That`s interesting. Mind if I "dig" a little more into your story? How long were you progressing before it reveresed? Which immunemodulator did/do you take? And how did you first become ill? Did you also have symptoms that, when they got there, never left?
     
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  9. lansbergen

    lansbergen Senior Member

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    Sudden onset. 10 years progression. Then 20 years improving.

    During progression no symptoms left. During improvement many symptoms disappeared.
     
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  10. Justin30

    Justin30 Senior Member

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    Yes these are blood tests if you are on Rituximab then that is one of the treatments they would use. On Rituximab supposedly you can feel worse before better.

    The problem with the illness is they dont know what it is yet so until they know it can be hard to treat.

    As many have attested though you can get better you just have to keep trying and have hope.

    There is a lot of promise and amazing researcher are working on it dont give up.

    Ill give you a famous example i think his last name is Bloom he tried many treatments overtime and he returned to almost full health. He was bedbound couldnt talk etc.

    Mike Denisin is another amazing story of recovery from severe ME.

    Keep positive. They will solve this and we are getting closer to answers to this illness.
     
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  11. Mariah

    Mariah Senior Member

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    @lansbergen Wow, a very long time indeed. Mind sharing which immunemodulator you take? Did you get it for your M.E. from an ME doctor, or for something else?
     
  12. Mariah

    Mariah Senior Member

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    Thanks for the uplifting words @Justin30! Very hard to stay positive when you have terrible symptoms like chronic vertigo and feel that you so far have tried everything that looks promising. Would be easier to just stand it all if you knew that say "in 2-4 years you will get better." But when you only progress, everything looks bleak and you slowly start thinking that you will be untreatable forever, life is hard. I guess all you can do is try to stay positive and try to keep hope allthough it is extremely hard at times.
     
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  13. Justin30

    Justin30 Senior Member

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    My illness has progressed rapidly. I have over 50 symptoms not all the time but they very. It is very tough at times...like really tough. Myself and many others can relate.

    If you are on Ritux they have stated a time of increased symptoms followed by feeling better.

    You may want to still get the Paraneoplastic panel done as it overlaps a lot with ME...at least some of the illnesses do.
     
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  14. Plum

    Plum Senior Member

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    I'm curious to know what this test would be called via Dr. Myhill. I know her tests quite well and can't think of 1 quite like this. Anyone have any ideas?
     
  15. Mariah

    Mariah Senior Member

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    @Justin30 I`m past the 6 month mark unfortunately (not sure how much I can say about this since there is still research going on with participants that are not to be fed information), so I see it as unlikely that I will respond beyond this point. I have experienced some minor symptom relief for some symptoms (at least that`s what I believe), but no real response. The weird thing is, most of the people I discuss and share my experiences with that are on the same treatment (around 20) also are not responding. About 4 has responded so far, and most are beyond the 6 month mark. Don`t know why we in particular would not respond as opposed to those in the research. Maybe we are sicker. have been sick for longer or something like that, but it does not seem like that to me. A woman in my group got M.E. from a cancer medicine that stimulates the b cells. Even she didn`t respond. I am so looking forward to the day they figure this thing out.
     
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  16. Justin30

    Justin30 Senior Member

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    OMF is showing a motochondrial problem...im guessing a metobolic disease...the main symptoms of this are encephalomylietis, encephalopathy and autonomic dysfunction.

    They are doing amazing reasearch and I am grateful for what they are doing to crack this thing.

    Further the new NIH study to that top immunologist sounds very promising. He is talking about personalized medicine. He is linking brain, gut and immune system which reflects what Lipkin, KDM, Simmaron Research and others are pointing to.

    This disease sucks...but so much promising is happening and including the NIH study, Lipkin Microbiome study, Ritux for some, Hemispherx change in Management, etc.

    Maybe a SPECT scan might show more.

    I am interested in stem cells too. I hope once they figure ME out they start using them more geared towards repair and switching genes on and off.

    There are also many treatments and drugs used by Drs of the past that have proven beneficial such as some what Dr Jay Golstein used.

    Theres also IVIG too...
     
  17. lansbergen

    lansbergen Senior Member

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    Levamisole. I did not get it from a doctor. I doubt any doctor will prescribe it. Back then it was freely availible.

    I am not cured but compared to what it was I now am in heaven.
     
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  18. Justin30

    Justin30 Senior Member

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    Paraneoplastic panel I think is what you are refering too.
     
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  19. panckage

    panckage Senior Member

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    Deconditioning can be a cause of gradual worsening
     
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  20. Mariah

    Mariah Senior Member

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    @lansbergen Sounds wonderful! What I would give for just some symptom relief. My neuro symptoms are terrible. I think I've come across someone sub categorizing ME in categories such as "neuro ME". That would fit me quite well.

    @panckage Not sure how to deal with that if that would be the cause. Increase activity?
     
    merylg likes this.

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