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Gamma globulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.

  1. Daffodil

    Daffodil Senior Member

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    Deleder..in Ontario, there is no IGG subclass test - just total IGG, which was low normal for me.

    Susan...I take 10 ml of Gamunex in one shot, for a total of 1 gram.

    I just hope this feeling is due to the immunoglobulin and not something else. It all seems so futile...spending 20 yrs sick, then spending years and years "herxing", for some imaginary time when I might be better. awful. just awful. sorry ..very depressed right now
     
  2. deleder2k

    deleder2k Senior Member

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  3. Daffodil

    Daffodil Senior Member

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    {{{susan}}} hug for you.

    yes..i use the pump and harpoon needle (lol). I will ask for different supplies the next time but as of now, I am just too sick, tired, and poor to look into getting anything else. i called some medical supply places to see if they could rent me a pump here in Toronto, but no one seems to know of a pump for subQ infusions...even in the ER, no one had heard of it. how odd.

    i am not on doxy or any other antibiotic right now, but i am due to begin cowden lyme herbals tomorrow. given how i feel, i am not sure i will begin them because i don't want to feel worse than i do now.

    xoxo
     
    Little Bluestem likes this.
  4. Daffodil

    Daffodil Senior Member

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    I'm miserable. ive done 5 infusions so far I think. I just feel crummy all the time. I sleep most of the day. I just wish I could give up already
     
    vli likes this.
  5. susank

    susank

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    No Daf - don't give up.
    Did you start your herbs?
     
    Little Bluestem likes this.
  6. deleder2k

    deleder2k Senior Member

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    It could take up to three month before it works. I would wait and see.
     
    vli likes this.
  7. Daffodil

    Daffodil Senior Member

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    thanks guys. had an appointment with my local doc today. I told him I am starting to think I will just be this way until I die. he seemed kind of pleased that I was starting to accept this, even though I was not and just told him that.

    I asked him to take blood to send away for babesia testing and he complied.

    he says it is hard to watch me, year after year, spending a fortune, chasing some cure that is not there. he even suggested seeing a psychiatrist to help me manage the illness.

    I tried to explain that this kind of illness is not something someone can accept - at least not the way I experience it, which is very severe. I told him there is no respite. I said that without trying, what else could I do? he did not have an answer.

    after 21 years, I do feel utterly stupid though. he said I need to step back, that I am not objective. but he doesn't understand how this feels. he says he is trying to help and is a very nice man...but I left feeling hopeless and not feeling like I had any avenue left to try.

    my local doc doesn't think this is lyme. I asked him if almost all of us were exposed to spirochetes etc...he said yes.

    I guess people want me to just stop trying, lay in bed, and disappear.
     
    vli and Valentijn like this.
  8. deleder2k

    deleder2k Senior Member

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    If you got M.E you shouldn't be negative at all. In a few years it is not very unlikely that you could be treated with Rituximab.
     
    NK17 likes this.
  9. deleder2k

    deleder2k Senior Member

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    And why is that?
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i dont think rituximab is going to be for everyone.
    I think those that have active infections should be cautious of it?
    i think its going to be a sub group thing?
     
    justy likes this.
  11. AndyPandy

    AndyPandy Making the most of it

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    justy, Scarecrow, NK17 and 2 others like this.
  12. deleder2k

    deleder2k Senior Member

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    @heapsreal, well for those that got ME by the Canadian criteria I think it is almost for everyone. What kind of active infections are we talking about? My understanding is that no one, no on eat all had to been excluded from Rituximab use at Haukeland University Hospital.
    I know if you got CVID, rituximab is probably not for you.
     
    NK17 likes this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I'm waiting to see more research.

    The infections I'm referring to are the common types in cfsme like herpes viruses, entero viruses, mycoplasma, chlamydia pneumonia and the research is showing cfsme are immune suppressed with low nk function and cd8 t cell function which make us more prone to the above infections reactivating etc.

    At this stage I still think we will be treated by being put into sub groups. There was a woman on here who was treated with ritux by Dr K and had herpes outbreaks, chest infections and general deterioration in her condition after being treated with rituximab.

    I'm just not convinced by what I have seen that it is going to be for the majority of everyone with cfsme. I think the positive exposure of this research will be good for cfsme but I think it's like ampligen in that if it was approved for treatment it would help bring cfsme out of the dark ages but again only a sub group will get a direct benefit from it.

    At this stage for me with history of different infections, I wouldn't be keen to try rituximab as it suppresses the immune system and could leave me open to these infections again. I need more research to be convinced. I'm not against research in this area at all but think larger studies are required as well as a solid explanation of how it works in cfsme.
     
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  14. deleder2k

    deleder2k Senior Member

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    If you have mycoplasma and pneumonia I am sure they will treat that before they infuse Rituximab. Over 40 patients have now been treated at Haukeland University Hospital with Rituximab, and they have seen none, 0, major side effects. From why I can recall, two got upper respiratory infections, and two were low on IGG which was handled.
    Remember that 67% had a major response from the drug in a double blind placebo-controlled study. This is big, and is on another level than ampligen. Many of the patients got up form dark rooms and could, after few months, run, travel and work again. Many said they could do exactly the same as they could do BEFORE they became ill.

    They do check your IGG levels continuously to monitor them. Remmeber that Rituximab is not a pill you take, or something you receive from your GP. This is advanced treatment done at hospitals - most likely by oncologists.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im all for it. I dont know how they selected patients for the study but i think the doctors probably have a good grasp on who will respond which is why they got good results. Larger studies can change the percentages.

    If you look at the original valcyte studies by montoya, he had a positive response in 21 of 25 patients(84%). When they started doing bigger studies the percentage of success were reduced in those with cfs/me with a infectious onset. Since then they have been able to narrow down possible responders to those with either 1 or combination of ebv/cmv/hhv6.

    The initial studies with ampligen showed similar positive responses.

    Im just trying to keep a healthy dose of skepticism as there has been a few 'cures' come and go in the past. Im sure its going to help a sub group but skeptical about a treatment for the majority?

    As for treating current chronic infections, it may seem easy for them to test for but testing for these chronic infections isnt very accurate. Most doctors would test say mycoplasma and if they didnt have igm antibodies but igg antibodies they would just say it was a past infection. igg antibodies does indicate a past infection but it cant tell them if its currently an issue or not, so many of these infections get missed. Sometimes the only way to know if they are an issue is to treat them with long courses of antibiotics. Dr nicolson's research shows that the longer one is ill with cfs/me generally the more infections they have.

    Im not trying to burst your bubble but just saying there is alot of variables to be taken into account. I dont even think the CCC criteria is that accurate, until they use a few biomarkers to make a diagnosis, its still very sketchy.

    Maybe a good candidate for rituximab is someone who fits the CCC but also has some labs indicating possible auto immune issues like a positive ana??

    Again, i think the research is great but before it comes mainstream they will need to do much larger studies than 40 people and also be able to have some measurable marker/biomarker and an explanation of how it works. I have heard cfs/me is an autoimmune illness but i have also heard that maybe the B-cells are a reservoir for some type of virus like ebv. Both sound good to me, but they need more research before they have an answer.

    Its just my theory or feeling about what i have responded to and what i have read about others responding to but at this stage i dont think there is going to be a silver bullet and we will need to be put into sub groups.

    I hope the government continue to support the rituximab studies into cfs/me and find the answers we are waiting for.
     
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  16. deleder2k

    deleder2k Senior Member

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    They doctors say they don't have a clue which patients respond or not. Their hypothesis is that Rituximab is too slow for some of they sick because their antibody production is too fast. That is why they are trying TNF-alpha inhibitors for the remaining 33% that didn't experience any effect.

    As previously discussed on this forum, a larger study will definitely confirm what they already know. Statistically they know already know that Rituximab will work. It will work on the majority of ME patients diagnosed with the Canada Criteria. It was said that they main reason for a phase 3 was to fulfil EU and international requirements.

    The valcyte study is not comparable. It was not blinded and "A 2012 chart review from Dr. Montoya’s practice indicated that 52% of patients reported 30% improvement in cognitive and/or physical functioning."

    For patients included in the rituximab study 67% experienced a major response in not just cognitive and or physical functioning, but in ALL CFS symptoms.
     
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  17. Daffodil

    Daffodil Senior Member

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    deleder..how long did their improvements last?
     
  18. deleder2k

    deleder2k Senior Member

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    Latest from the study at Haukeland University Hospital (few months ago): In a randomized phase II study of rituximab two infusions two weeks apart versus placebo in 30 patients with chronic fatigue syndrome, we then completed an open-label phase II study 28 patients received rituximab induction and maintenance therapy, a total of 6 infusions over 15 months.21 patients (72%) had response to defined criteria, 18 patients (64%) had clinical significant improvement in most CFS symptoms.Duration of response within 36-month study period, the mean 108 weeks for 14 major responders and 68 weeks for 4 moderate responders, and 11 are still in response at 36 months follow-up.Side effects: two with allergic reactions, two with upper respiratory tract infections, uncomplicated two with late-onset neutropenia.
     
    NK17, merylg and Daffodil like this.
  19. Daffodil

    Daffodil Senior Member

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    its a very dangerous drug i think. but i guess if i could get a 2 yr remission i would do it.
     
  20. deleder2k

    deleder2k Senior Member

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    I would let the doctors decide if it dangerous for you or not. With regular infusions they hope that you can have a permanent remission.
     
    NK17 likes this.

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