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.
Discuss the article on the Forums.

Study points to IVIG as treatment for "Depression"

Discussion in 'General ME/CFS News' started by PearlGirl26, Mar 13, 2015.

  1. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    This story sounds all too familiar to people within our community. I believe that many of us require Immunglobulin therapy, but it is either too costly or unavailable. If you have low IGG subclass numbers and/or recurring infections, please fight to find a doctor who will treat you with IVIG and/or SCIG. It can be life changing.
    http://www.med.nyu.edu/psych/news-a...lex-case-study-treatment-resistant-depression

    More info on PI here:
    http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/
     
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  2. Misfit Toy

    Misfit Toy Senior Member

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    I was on it for CVID...I am rare, but I felt like I was dying on it. MY immuno had to take me off of it. It was affecting my liver and kidneys and my heart was 128 beats per minute for weeks. Never again...I would rather die of an infection. It's extremely hard on the body. I did Hizentra, Privigen and Gammaguard and I have never been so tired or in pain my whole life. I was in bed for 5 months. I also had some sort of rash all over my whole body that went away once I stopped it.

    Again...not everyone has this. I did IV fluids with it, benadryl and had to add prednisone.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Note that the IVIG treatment here is not to do with having low IgG levels. It is designed as a way of treating presumed autoimmunity unrelated to IgG levels. I do not think there was any suggestion of immunodeficiency.
     
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  4. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I'm sorry you had to suffer so much. Thankfully, doctors are now opting for SCIG (subcutaneous) as a first line for non-emergency patients, which is FAR easier to tolerate and insurance companies are more willing to approve it because of the lower cost. It's administered by the patient at home without a nurse at low doses either daily, weekly (6 grams usually) or every other week. Even kids do it themselves. You can watch their videos on Youtube.
     
  5. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    You're right, which is why I posted it. This guy clearly, had major neuro-inflammation judging by his SPECT, just like so many ME patients. Plus, he was being treated for Lyme.
     
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  6. Aerose91

    Aerose91 Senior Member

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    My doc has considered starting me on IVIG if he can figure out a way to make my insurance cover it. I have severe Neuro inflammation and hypoperfusion in my brain and he suspects an additional autoimmune process on top of the ME. I told him that I don't want to do it yet, though. I believe we have to treat ME in stages and the first needs to be detoxing and methylation in order to reduce the load on our immune system. Then we can try and fix viruses, bacterial and autoimmune processes, otherwise once we're off the IVIG we may fall right back into it. Just my .02 considering the cost of it, once you get it, it better work the first time
     
  7. Martial

    Martial Senior Member

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    I was always potentially interested in IVIG but only if I could use my own blood. Who knows what kind of stuff people could be giving you that might slip by testing and get into your system.
     
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  8. Kati

    Kati Patient in training

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    What would be the indications for IVIG then @Jonathan Edwards and which specialist is more likely to prescribe it?
     
  9. Kati

    Kati Patient in training

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    I feel cheated and angry. There are all these drugs out there, Ampligen, Rituximab, Cyclophosphamide, anti-virals, IVIG and yet my government and my health care system is telling me that there are no treatments, and the local clinic is promoting self-management and meditation as treatments.

    Edit to add:
    In Canada, health care is a human right. The charter of right prohibits from discrimination based on disability. Patients with ME have been cheated from medical health care for decades now. i am very tempted to complain to the human right commission.
     
    Last edited: Mar 14, 2015
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  10. A.B.

    A.B. Senior Member

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    It's nice to read about people who get better after decades of unexplained health problems. Even more so when biological treatment fixes what is widely considered a psychosocial problem.

    I do wonder how they got a brain biopsy though.
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It is hard to say that there are any indications for IVIG to be honest. IVIG has been used for at least thirty years in almost all autoimmune diseases. I do not know why it started. For immune thrombocytopenia there was a time when it seemed to be the best option (of not very good ones) along with steroids. I think there was reasonably good evidence that it had an effect. I am not sure that there has ever been reliable evidence that it works in other autoimmune diseases. Moreover, it is very clear that it does not work very well. Over the years we used it we gave up using it for most of the common or non-life threatening diseases because it really did not do much. For rare life threatening diseases like dermatomyositis we went on using it but I think it is used rather little now because even there it was pretty unclear that it made much difference. Certainly nobody was cured.

    It seems in this case it has been used on the grounds that the patient might have had an autoimmune neurological disease but without them being able to identify the antibody. I have to say I am surprised that IVIG was chosen. I doubt that there is good evidence that it works. My understanding is that units treating these rare autoimmune disorders would tend to use either plasmapheresis, or immunosuppressive drugs or rituximab. If the idea is to replace the patient's Ig with other Ig then plasmapheresis is much more logical than just giving IVIG. And I do not think that this case report gives any reliable evidence that the IVIG was the reason for recovery.

    So I am afraid the 'indication' for IVIG is trying out something that you think might just work which in the past has never been that brilliant when you cannot think of anything else to do. We have absolutely no idea what the right dose would be - which in itself is usually a sign that we have no idea if something really works or not.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I would not put too much weight on IVIG solving decades of health problems. There is no reason to think that IVIG would have any long term effect on an autoimmune state - and in general that has been the experience in the past.
     
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  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    He was also on minocycline.
     
  14. duncan

    duncan Senior Member

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    Good catch, RustyJ. It says the patient was told he was suffering from neurological complications of Lyme disease. That's an odd choice of wording, which leads me to suspect the authors didn't put much weight behind this possibility.

    I'd be curious to know his Lyme metrics. Mino would certainly help explain the improvement if Bb were the culprit. And if I remember correctly, broad spectrum tetracyclines have showed promise in other neurological disorders in the past, from MS to MDD, with the general explanation being an occult anti-inflammatory effect.

    They did a follow-up after 18 months. I'd be curious to see what happens going forward.
     
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  15. Marco

    Marco Grrrrrrr!

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    Minocycline also attenuates neuroinflammation in vivo and in vitro. In vitro would tend to argue against 'occult infection'.

    Interesting story though. Normally these types of autoimmune neurological syndromes (if that's what it was) tend to be acute and pretty devastating. The chronicity in this case strikes me as unusual.
     
  16. justy

    justy Senior Member

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    I think the whole point is to have other peoples blood - it wouldn't work using your own.
    I have been offered IVIG and if i can get to the clinic for treatment then i am still going to consider it. A couple of studies have been done that suggest it can be helpful in M.E/CFS see Nigel Speights key note speech at Invest In Me last year discussed these (cant find a link to it anywhere unfortunately as its very good)

    http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/
     
  17. Daffodil

    Daffodil Senior Member

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    I used to love my country (Canada) and now I think it sux. There are no spinal surgeons...some people actually become paralyzed waiting.......there are no psychiatrists taking patients.....and no CFS treatment to speak of! I wonder what is lacking in areas I have no experience with.

    maybe that is just the way with socialized medicine.....although things seem to be a lot better in places like Germany and Belgium!

    what can you base your complaint on? Canada will not authorize treatment unless it has been proven to work in a large scale scientific study and maybe replicated....but then again, someone in Vancouver did manage to get rituximab paid for in California......so who knows.

    I think a lot depends on the province you are in, too.
     
  18. Daffodil

    Daffodil Senior Member

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    hi misfit. I am wondering what dose of the IVIG you tried. my doc gives smaller doses
     
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  19. anciendaze

    anciendaze Senior Member

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    Just as a comment: neuroborreliosis is a definite organic cause of depression, though it is easiest to determine this at autopsy. This can be described as a neurological complication of Lyme disease.

    However, I would not consider IVIG as a general treatment for "depression", except on an experimental basis to determine if there is an underlying physiological problem. The problem is that "depression" is a very broad diagnostic category which has absolutely no connection with particular etiologies.

    Here is something I had already written offline when this thread started:
    During the era of patent medicines most treatments for "depression" which rapidly relieved symptoms contained substances which are now controlled by the DEA. (You might also check on treatments for sleep disorders, including codeine and morphine.) This should be enough to make one cautious about using this particular symptom as a diagnostic category. Legitimate antidepressants all have the problem that the side effects appear before the benefits. Misunderstanding of this by clinicians often leads to avoidable suicides.

    This is very far from saying that IVIG and/or minocycline have no place in the treatment of depression. Some causes of depression do respond to these treatments. Unfortunately, this will not help at all if the organic cause is cardiovascular disease or subdural hematoma. A thorough search for treatable etiology is necessary to deal with this. If this were regularly done it would save lives, and also destroy the convenience and economics of dumping patients in a diagnostic category based on a single symptom.
     
    Last edited: Mar 14, 2015
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  20. ukxmrv

    ukxmrv Senior Member

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    I didn't have any luck with IVIG. It was around 2005 and my memory of the frequency and dosages is hazy. It was calculated on my weight and 1 or 2 a week week, then a break repeated a few months later.

    The good news is that I had no adverse effects.

    My ME symptoms are mainly viral plus the usual PEM and other things.

    There's a long history of using IMIG for ME in the UK. Dr Richardson used that and others.

    Just as an aside I've been trying to get my GP to test for low IGG but he's been downright evasive.
     

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