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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IVIG Treatment

Discussion in 'General Treatment' started by Navid, Dec 9, 2017.

  1. Navid

    Navid Senior Member

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    Warning: While I was looking for feedback into a treatment my Dr. recommended this post seemed to veer off track and got onto a path of panning treatment options and badmouthing Dr's who may suggest these treatments.

    Those of us who have been severely ill for many years know that we must do our due diligence before embarking on any new treatments and be open to the fact that there are no studies or research providing us concrete answers. We must decide ourselves if we trust our Dr's and are willing to take risks based on "non-traditional" test results and our Dr's clinical experience in treating our symptoms.

    Over the past decade I have tried many treatments that have not worked or have made me worse. I have also laid in bed for years and done nothing, also getting worse under this "protocol". Basically there are no answers and we must make it through this living hell based on our wits and faith in each other and our Dr's.

    This thread turned very unproductive, unfriendly and caustic quite quickly; that is not the direction or support I need while suffering so greatly. So before you wade into this thread please be prepared that it did turn ugly at some points and if your capacity for stress is low (like mine) you may not want to wade into this swamp.

    There is some useful info from gingergrrl, Learner, Country Girl, Jeanne and Hip and others...I may be missing some....but there is also some nastiness directed at Dr's and a tone of having to defend your treatment even if it did in fact work for you.

    I found the thread overbearing and intimidating and turned away from it for awhile until I received some private PM's that were more gentle and supportive.

    I am not asking that people not disagree but I wish it could be done in a less hostile, accusatory manner.....one post told me I should fire my Dr.....because in my post I could not explain well my Dr's theory. My Dr's theory of this disease was also called bullshit?

    Overall this thread was unpleasant and I will not be asking the board for direction or opinions again.

    Thanks to all of you who did provide good useful direction.

    Regards.






    Hi:

    I am seeing a new Doc who thinks my ME/CFS may be related to auto-immune issues. Many of you know who this Dr is and some of you have had success with his treatments. I will be having his myriad of testing done and from that point we will try to develop a plan of action.

    I have been severely ill for 10+ years.....bedbound the last 6-7. I have debilitating fatigue, unrefreshing sleep, severe NMH, HPA dysfunction, EDS....etc. The only area I am lucky in this disease is my cognition is not severely affected, more moderate. The worst things are inability to sleep well and inability to stand more than 5-10mins b/c of severe NMH.

    Anyway, if results come in as Doc expects we may be looking at IVIG and ritux treatment. I know several of you have had success with this approach. I am wondering if ppl who have tried this approach wld be willing to share their experiences. Have you improved? Have some gotten worse with this treatment?

    I am very gun shy but also desperate. Every treatment I have tried has either made me worse or had no affect at all.

    I know this is a very broad question, but I am too ill to make it more precise. Any feedback received is greatly appreciated.


    Warmest Regards to Everyone!
     
    Last edited: Dec 13, 2017
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  2. jpcv

    jpcv Senior Member

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    Why does your doctor say that your ME os related tou auto-immune issues?
     
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  3. Navid

    Navid Senior Member

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    it seems to be his theory that some me/cfs patients had an original infection that is now gone and we are left with rogue anti-bodies causing auto-immune issues...affecting nervous system, heart and other organs. He will also be doing tests through Cell Trend and Cunningham Labs that help him to see if illness/symptoms are more auto immune related. There are lots of posts on IVIG, Ritux and auto immune issues....with a few other patients seeing results from these treatments.
     
    Last edited: Dec 10, 2017
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  4. Learner1

    Learner1 Forum Support Assistant

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    @Navid It sounds like you are in very good hands with your doctor. The diagnostics, advice, and treatment he's provided me has made a dramatic difference in my situation.

    Keep us posted on what you find, ok?
     
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  5. duncan

    duncan Senior Member

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    You might well be on to something.

    But if your doc cannot explain it to you to your satisfaction in layman terms - fire her ass.
     
    Last edited: Dec 10, 2017
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  6. mrquasar

    mrquasar Senior Member

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    I thought I remember @Jonathan Edwards saying there is no evidence that ME/CFS is caused by autoimmunity. :confused:
     
  7. laxative_mess

    laxative_mess

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    Please keep us posted.

    Are there other PWME on the board who actually got better with IVIG besides Gingergrrl?

    I am in the middle of getting IVIG approved by my health insurance and would love to hear experiences about IVIG...

    I am really hoping IVIG will work for you, Navid.
     
  8. Learner1

    Learner1 Forum Support Assistant

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    I started IVIG in August and though I've had side effects (headache, nausea, intestinal) for up to a week after each cycle, I've had some of the best days/weeks I've had in over 18 months, with more energy in general and I can think again.

    As time has gone on, the side effects have been less, which my doctor predicted. I take curcumin, boswellia, steroids, NSAID, and antihistamines which have minimized them and also switched brands, which helped too... The product chosen is matched to you - they don't all work the same.

    I'm on a higher autoimmune dose due to CVID and autoimmunity. And on antivirals and IV antibiotics for infections.

    Good luck!
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This is a very old theory that has been hanging around in immunology since 1960 and there is no evidence to support it. If there was any truth in it I think we would have discovered it thirty years ago. I regard it as bullshit to be honest.

    We now know that rituximab has no effect in ME/CFS and should not be used. The original suggestion that it might be helpful, from the phase II trial, turns out to have been a chance finding, not confirmed. No physician should now be recommending rituximab. I would personally advise very strongly against it because it is not free of rare serious side effects even in people without ME. It needs to be given by someone who understands immunology in detail and it sounds as if this physician does not. I would run a mile from all this.

    IVIG may be of help in certain autoimmune diseases but not that great. At present the evidence for usefulness in ME is on balance that it is not useful.

    It is time physicians peddling pseudoscience got themselves out of the system.
     
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  10. Murph

    Murph :)

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    I'd be reluctant to go ahead with rituximab ahead of the fluge and mella paper coming out early next year. their indications are it is not effective for the average patient. Perhaps a small subgroup for whom it works will be found but we won't know for some time.

    ivig might be a better idea right now. while we lack high quality evidence mecfs is autoimmune we have a few hints. And absence of evidence is not evidence of absence.
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Fluge and Mella have made it clear that the phase 3 trial results are NEGATIVE (they have communicated with me personally as well). There is no need to wait for publication. There is no effect.

    We have evidence of absence of an effect for IVIG - from at least one formal trial that failed to confirm an effect.
     
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  12. jpcv

    jpcv Senior Member

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    So according to avaiable evidence, how can one explain some findings like aouto antibodies and high ANA titers in some patients? Immune disfunction?
     
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  13. PinkPanda

    PinkPanda Senior Member

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    Ca. 30% of people with ME/CFS have elevated antibodies against one or more M acetylcholine and β adrenergic receptors (Reference). This might indicate involvement of autoimmunity in a subset of patients.
     
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  14. Hip

    Hip Senior Member

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    If your ME/CFS were due to chronic parvovirus B19 infection, IVIG seems to lead to complete resolution of symptoms — see here and here.

    Outside of parvovirus ME/CFS, Dr Chia reports that IVIG helps 1 in 3 of his ME/CFS patients,1 but I think the benefits are relatively minor. He does not often use IVIG, as insurance will not usually cover it.
     
    Last edited: Dec 11, 2017
  15. Learner1

    Learner1 Forum Support Assistant

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    My ME/CFS doctor, who is associated with one of the new US Centers of Excellence, explained that likely Epstein Barr had caused the weird antibodies he'd found in me. One month later, at the OMF Stanford symposium, the researchers said the same thing. Not sure it's bullshit.
    It is becoming quite clear that ME/CFS is an umbrella diagnosis with patients who share symptoms but who may have different underlying causes, biochemistry, and comorbidities. Mady Hornig did a nice job of explaining this in her talk last month in Norway.

    There are a few patients who have been helped by Rituximab. There are many who haven't. There are a lot of unanswered questions. I was struck by this presentation at this year's Immune Deficiency Foundation conference, where, beginning at 1:00 the use of Rituximab, Bortezomib, and plasmapheresis are used as newer strategies to attack autoimmunity in dysfunctional immune systems.

    I'm not a doctor. I don't know what the answers are. But I'm certainly not going to follow the advice of "don't do Rituximab and IVIG because they don't help ME/CFS" just because you said so.

    Rather, I'm thankful that I see 2 very curious, brilliant doctors who carefully test patients to see what exactly is the matter with them, then work to treat what they find.

    I'm benefiting from IVIG, and though I'm certainly going to do a lot more investigating as I am concerned about the risks, I may actually fall into a category of patients who might benefit from Rituximab. (My dad was in the original clinical trial for it and he certainly did.)

    And, here in the US, we need to convince our insurance that we need an expensive treatment like IVIG. My doctors did all the appropriate testing and submitted it along with an appropriate ICD10 code, and it was approved. Not everyone on this site will be able to do this, but I've noticed there are others around here in the very same situation who have also benefited from it.

    We are all individuals and it's wise to carefully gather a broad set of tools to fight this illness and judiciously apply them as they fit our individual needs and not be scared away from treatments that might help in our unique situation just because some "expert" on the Internet who doesn't know our medical history is making broad pronouncements.

    One thing I've learned through my journey is modern medicine and the doctors who practice it, no matter how good they are, don't have all the answers. There are too many unknowns and our bodies are too complex. That's why there's no easy cure here.
     
    Last edited: Dec 11, 2017
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Autoantibodies of some sort are present in a high proportion of normal people. ANAs are very common, high titres less common, but the studies I have seen suggest there is not much difference between controls and ME cohorts.

    The reason why autoantibodies arise is as far as we know nothing to do with infections but rather a spontaneous random process that relates to the spontaneous random nature of antibody genesis as a whole.
     
    Last edited: Dec 11, 2017
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  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The fact that so many doctors regurgitate this does not make much difference to the fact that it has been around for decades and there is no evidence. I spent my whole career in this field and am pretty sure it is bullshit - just repeating what others have said because it is fashionable.

    Sure, rituximab is useful in all sorts of autoimmune conditions . But as far as I know it has never been shown to work where there is not other good evidence for autoantibodies - moreover it makes several T cell mediated disease worse.

    You are entitled not to take my advice but you may remember that I was the person who showed that rituximab worked for autoimmunity in 2004. I probably know more about its use than anyone else.

    We don't do that sort of suck it and see medicine any more now that we know that it is totally unreliable. Most of us grew out of that approach in the 1980s.

    And that worries me seriously. If people are talking up treatments so that they can get their bills paid that is not going to make for reliable advice for others. It looks pretty clear that the results of the early rituximab studies were just placebo responses. When people have placebo responses they are often very convinced that their improvement was due to the test treatment - which is the reason why we do blinded controlled phase 3 studies - which in this case came out completely negative.

    Nobody pretends to have all the answers. The problem is that certain ' ME specialists' pretend to have answers they do not have. And vast amounts of money gets poured down the drain instead of going to decent research.
     
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  18. Learner1

    Learner1 Forum Support Assistant

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    On this site, the have been a number of patients who were leading normal lives, got a viral illness, became horrifically ill, and after a journey through doctors offices and hospitals, doctors identified strange auto antibodies which seemed to me causing their symptoms, and then underwent treatments like high dose IVIG, Rituximab, Bortezomib, etc. and their symptoms reversed.

    I doubt a healthy patient would go through that. For them, there are likely other things in their systems that are counterbalancing the autoimmunity.

    But for patients who suddenly became extraordinarily ill, the development of auto immune antibodies may play a more important role in destroying their quality of life.

    One can sit around reading studies, or one can be an N=1 study and work with a doctor to personalize care.
     
  19. Nickster

    Nickster Senior Member

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    Dr Chia told my son that he liked using ivig, but, it was hard to convince the insurance to cover it.

    My son has tested positive for parovirus and I did not realize that ivig helped patients with this condition. Thank you for sharing.

    My son is still waiting for a treatment plan from a group of 4 doctors and they are looking into ivig as one of the items used for treatment.

    Thanks
     
  20. Learner1

    Learner1 Forum Support Assistant

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    That is your opinion. My doctors go on labs and decades of experience that is obviously quite different than yours and do not quote things to be fashionable.
    Bingo. So, for those of us who DO have auto immune conditions and not T cell mediated disease, it might just be worth our doctors looking into.
    Rituximab first came into my life in the 1990s. I know for a fact that you are not the only doctor with decades of experience with it.

    It is a tool, with risks and benefits. I have great respect for it and do not think its a magic bullet or that its for everybody. It should be investigated with care in the context of other potential treatments.

    And, I don't need some retired specialist 5,000 miles away who has never seen my entire medical history, labs, etc. pontificating about what treatment I should or shouldn't pursue. Your warnings are heard, but they're not the last word. It is up to each of us in working with our doctors.

    There are no perfect answers here, and everything us pretty experimental as far as I can see. The alternative us to wait 30 years for perfect answers, time most if us don't have.
    I can assure you that a 50 plus year health history was taken into account with an enormous stack of lab work and that a valid diagnosis and treatment plan was made by an expert. No one was talking up treatments to get bills paid. You're being a back seat driver here without knowing what road you're on.

    What I find egregious is the pitiful situation in the UK, where it seems that doctors are either not allowed to or refuse to investigate underlying health problems once the blanket diagnosis of ME/CFS is made. The arrogance of the medical establishment and unwillingness to spend the money to properly diagnose and treat patients is sad.

    And, as a US taxpayer, I'm a little angry to be footing the bill for medical research where other countries don't invest and then take potshots from the peanut gallery. The US alone has kept ME/CFS research and treatment in the dark ages with thousands of patients suffering more than they need to.

    I feel fortunate to live in a place where I have curious doctors using the latest research, access to high quality diagnostics, and a wide variety of treatments for the problems found.

    Placebo response? Unlikely.

    What is likely is that the patients who benefited had something in their systems different than those who did not. At this point, no one knows.

    Again, an ME/CFS diagnosis is a clinical diagnosis based on symptoms, not on any biological markers. It encompasses patients with a variety of health problems driving the symptoms. Some patients have 8 or 10 things driving symptoms, others 1 or 2, and still others 25 or 30. It seems very odd to think one treatment will cure anyone here without more info.
    This is great if you're sitting around in s glass tower theorizing.

    Its a lot different if you're a patient whose quality of life and future prospects have been stolen and you're lying around in a heap in a darkened room at the mercy of others to help you do the most basic tasks.

    Perfect answers to this Pandora's box of problems are likely 30 years away. For those of us who are patients now, we don't have time for your perfect "evidence based" studies on large cohorts of patients. We need to be trying treatments now, with the best judgement possible, individualized to our situations.

    I'm a cancer survivor. Again and again, I'm amazed at how leaps of faith and dramatic innovative treatments can be tried in that world, while in this world, we're supposed to patiently wait for perfect answers. That's bullshit.

    My dad was the first person to live more than a year with his kind of non-Hodgkins lymphoma due to being in the clinical trial of Rituximab. He lived 8 more years. Should be have not tried it because no one with his disease had ever benefited before?

    If we could get some of these cancer immunologists working on ME/CFS, I think we'd have answers faster.
     
    Last edited: Dec 11, 2017
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