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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Would you take Rituximab

Discussion in 'Rituximab: News and Research' started by Andrew, Feb 6, 2012.

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Would you take rituximab

  1. yes

    62 vote(s)
    51.7%
  2. no

    29 vote(s)
    24.2%
  3. undecided

    29 vote(s)
    24.2%
  1. Tia

    Tia Senior Member

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    Duh! In a heartbeat!

    I really believe in this treatment and since you're in the hospital during surveillance over night, I'd feel safe and would go through with it. Noone can live like this and 35 years is more than neough so I'm willing to try ANYTHING (almost) to get rid of it. It's like being in hell.
    ikke2001be and JAH like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    It is cause I have a great degree of disability with the illness and can not take care of myself (and hence i have/need gov home help and other people helping).. Id be very happy if I could trial Rituximab and would be able to do this without fear. (I have far more fear over being disabled like I are currently). I'd really like my independance back, be able to drive again.. be able to leave the house by myself without support again.. this illness restricts me so much now.

    If my illness was less disabliing or I hadnt had this long term, I doubt I'd want to try something which is so new and unproven and potentially dangerous..but I fear that ME could kill me at some point anyway due to the ME severity Ive had in the past. I fear that I could relapse back to that if I dont keep trying things to improve more... my whole life is currently like a dice game anyway.
  3. Jacque

    Jacque Senior Member

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    Currently takin it (have had 2 infusions) Had five great days of energy and decrease in "flu" symptoms...but they came crashing back... I would do it all over again... Dr. Kogelnik layed out my options and said the Rituxan held the greatest PROMISE - currently... so at age 51...I am goin with the most promise...and bein a part of the hopefully near in the future solution...cuz someone has to do the guinea pig work.. right? You should know within ONE year if this was successful... And also don't look at Rituxan as all the Chemo you have been hearing about...the severe puking, hair loss, sickness...etc... This Chemo just goes after B cells.. I have had increase in symptoms but can have that with a stinkin storm rollin in... I have been ill for 35 years...so I decided... JUST DO IT... Stay tuned...
    heapsreal likes this.
  4. Jacque

    Jacque Senior Member

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    Whoooa...Tia...I finally found someone that has been as sick as I have.... There are NO words for it... I try not to make it my "identity" but damnnnnit it is... But I bet you have an amazing attitude and strong spirit, as I? Cuz that is the ONLY thing we are in charge of.... So are you on Ritux?
  5. Jacque

    Jacque Senior Member

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    Yes you are probably right... I think it is the degree of DESPERATION...but unfortunately I bet that in those early years of illness you are prob more likely to get WELL... Less damage and extent of illness... Just guessin?
  6. Dainty

    Dainty Senior Member

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    The answer for myself is no. I've found a treatment working for me that is far less risky. As Sally said, drugs are and will always be a last resort for me. A last resort that I have taken in the past when I felt like I had no other options. Discovering other - effective - options that are safer changes the game, IMO.
    MeSci likes this.
  7. Jacque

    Jacque Senior Member

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    Glad you are finding something that is working...what are you doing??? Do Tell...
  8. Jacque

    Jacque Senior Member

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    i
    I am also shocked that you are in the hosp under surveilance during and after your infusion... I drove home after my 2nd... maybe I shouldn't have...lol Just planned to pull over if I got to feelin bad...
  9. Dainty

    Dainty Senior Member

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    I'm receiving manual treatment to address widespread structural problems (partially detailed in a blog post here). It is administered by a doctor (D.O.) specializing in neuromusculoskeletal medicine (NMM), which is basically the U.S. version of a cranial osteopath. They're licensed to practice the full scope of medicine but typically find there's no need for drugs or other approaches because this treatment heals so many issues. It isn't about throwing something new a the body but rather to unwind physical blockages interfering with the body's proper functioning and normal healing process.

    So, for example, my extreme allergies, food sensitivities, and MCS (porelain environment, gas mask, etc) are all receding on this treatment. Not because the treatment addresses them directly, but because my body is setting about the process of healing itself.

    My PEM, previously my worst symptom, relieved when enough structural tension - that is, strains on my body keeping tissues tense 24/7, which I was previously unaware of - was released through treatment. I found that when PEM hit, I could lay down and it all instantly melted away into blissful rest. That's the way normal, healthy bodies process fatigue.

    I could go on about the various kinds of improvement but I've already written about it here, here, here, and here. I never would have guessed that I had any major structural issues, let alone something as extreme as my skull being compressed inwards or my ribcage unable to fully expand. Other practitioners in the field such as chiropractors and regular osteopaths missed at least 98% of my structural problems. So it's important to get an osteopath who practice it as their primary or, ideally, only specialty. They're the ones able to identify the problems specifically and open the way for patients to get well.
  10. Tia

    Tia Senior Member

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    Nope! Not on nothing exept antdepressants. Interesting that you say that I must have a strong spirit because everyone keeps telling me that but I don't really get what they mean. It's basic survival instinct. Plus I havent really known I've been sick until recent years when I found out not everyone are this tired.

    But I try to keep my hopes up. Recently they found I have graves disease to, so I'm hoping that's all. But about the rituximab..YEAH; I bet thats great stuff because I'm following the norweigan reseach closely and it sounds GREAT. Also keep in mind that the biomarkers the swedes are working on, are coming and that means we can find out if we have ME through a simple blood test so yei!

    Keep your hopes up, gurl! <3:p:sluggish:
  11. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    That's reminiscent of a book I'd read long ago: "Bioenergetics" by Alexander Lowen

    It seems there now is a foundation as well: www.youtube.com/watch?v=ghZg34hKeCw
  12. Jacque

    Jacque Senior Member

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    Well you are fortunate you do not have severe relentless fatigue along with your fatigue?? And keep following the Rituxan cuz it is givin me my life back day by day... I will write about it tomorrow... It is 2am and I have been on the GO since 11 this morning... My couch is missing me....:thumbsup:
  13. Jacque

    Jacque Senior Member

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    Hi Dainty... I am going to review all of that...been feelin soooooo much better that I have been up n runnin and want to take time to read all of this... Does insurance cover Osteopaths? I don't know if we have any "good" ones around her but am gonna check it out...cuz I KNOW I need it in my neck jaw etc... hell my whole body... So happy you have found something that is working for you...Keep goin girl
  14. Dainty

    Dainty Senior Member

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    Mmm, I'd be pretty wary of this. I find a major difference between a psychiatrist making a blanket statement that "All the problems a person has are structured in the body" and a highly specialized osteopath, with extensive post-graduate training, making a diagnosis of specific structural problems after hands-on examination. A joke I heard once goes like this:

    What's the difference between a doctor and a therapist?
    A doctor treats what he thinks you have; a therapist thinks you have what he treats.

    In this case the psychiatrist thinks that everyone's issues can be resolved by his cure, namely psychological work to address a fear of fully experiencing feelings/life.

    In contrast, an osteopath manually evaluates each individual for whether or not they can locate structural issues that are problematic to the body, and whether or not those issues can be addressed. Osteopaths do not believe that all problems can be resolved with their treatment, in fact, just last week my osteopath (a fully licensed medical doctor, as they all are here in the U.S.) referred someone I know to a Natruopathic Doctor instead, because upon examination he discovered that person's health problems were not rooted in structural issues so there was nothing more that he could do within his specialty.

    Would a bioenergetic therapist have recognized this? Somehow, I doubt it. They leave no door open to the possibility that the person might not have what they treat. And you can guess who pays the price - literally. (No, they wouldn't have said they can treat a medical condition, but they would have suggested the possibility that it could resolve it [insert anecdotal stories here], and that potentiality would be enough to convince the desperate patient to "just try" it. An osteopath, on the other hand, definitively states whether or not s/he can help you with your medical problem.)

    Another note is that from what I'm reading on the website the physical side of bioenergetic therapy relies on exercises, movements, postures, etc to accomplish the structural change. That would not have been doable for me, or another person I know receiving cranial osteopathy. My osteopath prescribed gentle breathing exercises for me at first and quickly discovered it was too much for my body. It actually made me sicker and aggravated my structural issues more! The therapy may work on simple cases, for people who are relatively healthy, but if your body is really messed up then I would consider it risky.

    Jacque - I'll write something up about how to find a good one and either PM you or post it somewhere and send you a link. Regarding insurance, you'll have to find out for yourself, as it will depend on various factors.
  15. andy

    andy

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    Romsey
    i would say yes ,because this seems so positive to us all getting well again ,cfs is like be half dead anyway,i just want my old life back,SO YES.
  16. Jacque

    Jacque Senior Member

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    Agreed Andy...I figure if it works for me then I was a part of the research movin this beast in a forward direction...and if it doesn't then we have ruled that route out..o_O
  17. snowathlete

    snowathlete

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    Ive thought about this abit. In light of my recent worsening of symptoms, I'd take it in a flash so long as the person administering had done it before without hiccups.
  18. SpecialK82

    SpecialK82 Senior Member

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    Welcome to the Forums Andy - glad to have you here :)
    jace likes this.
  19. LazyLizard

    LazyLizard 11yrs with ME

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    Melbourne
    I voted yes.
    I am sick and desperate.
    Alternative therapies, diets and protocols didn't work for me. They cost me a fair bit and on
    some occasions I felt worse. Dashed hope every time.
    I need my life back.
  20. Anne LiConti

    Anne LiConti Waiting for Rituxan

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    Hello,
    My name is Anne, this is my first time posting here :).
    I am 48 years old, I have had the illness for 47 years, didnt get diagnosed until I was 29, was disabled and unable to work when I was 31 (I was an active RN for almost 10 years), 95% bed and house bound since I was 33, divoced and couldnt take care of my young children at the time as well. Im tired of being a walking pharmaceutical with my bag of drugs, and talking to the world on a laptop, I would definately take Rituxan and am anxiously waiting for it! I fit the criteria. I have written Dr.'s Mella and Fluge and am waiting for them to write me back.

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