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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

Discussion in 'Rituximab: News and Research' started by FancyMyBlood, May 6, 2012.

  1. user9876

    user9876 Senior Member

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    Understanding the trigger may not be important. Understanding what is happening in the immune system once triggered will be the key. Something like Rituximab breaks up one cycle repsonsible for some auto immune disease. I think its something to do with the b-cells sending signals that the t-cells respond to. Given not all RA (or ME) patients respond to Rituximab then I assume there are other autoimmune processes.

    I'm not sure if they know about triggers in autoimmune diseases in general. I have a vague memory of reading an article about whether RA occurs in clusters - I think they looked at a few hospitals for referals and found no particular clusters.

    Its quite possible that there are many different triggers with the trigger being a bug that puts the immune system in a particular state.
     
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  2. Jacque

    Jacque Senior Member

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    I will have to do some checkin on Australia... Dr. Kogelnik did tell me that when I got the tick bite it may have also infected me with the viruses that cause ME/CFS....hmmmmmm? Interesting huh? Have you seen Under Our Skin yet? It is a real eye opener!
     
  3. Jacque

    Jacque Senior Member

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    Do they have mosquitos in Australia?? Do you know? Cuz Mosquitos carry it as well in addition to viruses and parasites... Maybe someday they will find that it is not the Lyme carried by the bugs makin us all so sick - but a particular virus or parasite. I do think bug's makes the most sense as to how millions are getting this and it is not spread person to person.. hmmmm:thumbdown:
     
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  4. Jacque

    Jacque Senior Member

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    Oh and I have also heard it can be spread by fleas! Scarey stuff huh?
     
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  5. Jacque

    Jacque Senior Member

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    I have a friend who went on the Enbrel for her RA (I thought she was crazy when I heard it bein such a scarey drug) but she is doing SO much better... I am gonna talk with Dr. Kogelnik about it on the 9th...
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do we have mossies as we call them here, they can be the size of a small horse and attack u by the millions the buggers. Maybe not the size of a small horse but we have a crap load full here, im sure there are many different infections carried by mossies and ticks that they dont even know about. Health authorities here deny the existance of lyme disease here saying the cases found here in australia got infected from overseas but a news storie last year showed people infected with lyme that hadnt even left the country.

    Theres a famous tv commercial here that said 'Dont forget the aeroguard and have a good weekend', aeroguard is an iconic mossie repellant that we aussies have used for decades to try and stop getting bitten.

    cheers!!!
     
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  7. taniaaust1

    taniaaust1

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    yeah we do have mosquitos. We have our own mosquito disease in Aussie tropics called Ross River Virus. 10% of those who catch Ross River Virus end up with ME/CFS.
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    dengue fever is the other big infection in mossies.
     
  9. alex3619

    alex3619 Senior Member

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    I lived on a creek feeding into the Ross River from age 4 to age 17. My aunt, who lived nearby, caught Ross River Fever. I was never diagnosed with it, but I have also never been tested for it. I am also not aware of its life cycle. Does it resember the other pathogens that appear to trigger ME? I don't know. Bye, Alex
     
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  10. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Hulu has had it, free.
     
  11. Jacque

    Jacque Senior Member

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    Good Grief we have Ross River Virus, West Nile Virus, Malaria, Lyme, and many others....heck look at what caused the Bubonic Plague!!! Insects are LETHAL little dirty needles..... I encourage you all to watch Under Our Skin because it will help you to understand why the Govts are turning a BLIND eye to the illness... there is no$$$ in it...it is disgusting when you learn about it! My pain today was terrifying honeslty...and I sat there in it just thinking "one bug bite"...that is all it took to do this to me....:cry:
     
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  12. redo

    redo Senior Member

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    I think lyme plays a role in some ME cases, but it seems more likely to me that the role is being just another trigger, like mentioned here (you're welcome to that debate further in that thread).
    If you've got a source for that, then please do share. The longer the list of possible (and proved) triggers, the better understanding we'll have of the disease. IMO we've got to look for what's being triggered, and that "what" seems to be something which is able to cause autoimmunity. Given what we currently know, I think the "what" is most likely a endogenous retrovirus, or a retrovirus which is widespread and dormant in many healthy people.
     
  13. Jacque

    Jacque Senior Member

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    If you have not watched UNDER OUR SKIN on Netflix that would be a great place to start for info on the link between CFS/ME and Lyme! Another GREAT website is www.canlyme.com ... lots of good info there...

    We have all been labeled as being a little NUTTY and Psychosomatic in regard to our illness... and all I know is trying to unravel this mess is MAKING ME NUTTY!!
     
  14. Jacque

    Jacque Senior Member

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    Well that is not good...but if Rituxan does not do the job on this "PAIN" I am willing to take the infection risk with possibly the Enbrel.
     
  15. Jacque

    Jacque Senior Member

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    From what I have read about Lyme it is a very intelligent bacteria. Knows how to run, hide, change form etc... even has its own way of building bio films to guard it from the immune system as does the Protomyxoia parasite. I wonder if all of this "trickery" and stealth like activity is what causes the immune system to run amuck... For instance Hashimotos (autoimmune Thyroiditis) the immune system is trying so hard to kill the pathogen infecting the thyroid that damages the thyroid in the process. Lyme lodges itself in joints, in nerves, brain etc and the same occurs.. Sometimes I wonder if we stand a chance with such a smart invader.... guess time will tell.
     
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  16. Jacque

    Jacque Senior Member

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    They need to hurrrrry up... I ain't no spring chicken!! :) But at least they are movin forward!!:thumbsup:
     
  17. taniaaust1

    taniaaust1

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    I was quoting roughly out of my head with facts from study(s) years ago to come up with a 10% rate (there may of been another study too as I have seen 10% mentioned).. I just looked to try to a reference for you.
    http://www.racgp.org.au/afp/200908/200908barber.pdf 250 patients with Ross River Virus, EBV or Q fever were followed for 12 mths. The incidence of CFS was 12% at 6 mths and 9% at 12mths and this did not differ between these three infective agents. Page 588 of the Australian Family Physician Journal (which also then goes on to reference a study)

    I dont know but maybe the patients who end up with CFS after lyme may be of a similar percent. It would be fair enough to think lyme may be doing the same thing as these other illnesses.

    Whatever the issue is.. it dont appear to be these infective agents but that they are just acting as a CFS trigger... something else is wrong
     
  18. redo

    redo Senior Member

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    Thanks. Yes, it's actually approximately the same figures with neuroborreliosis (I'd assume it's much the same with standard borreliosis but I haven't seen the numbers on that).

    In this study they find out that 10% of those infected and treated, are unable to work or study and have pretty much ME/CFS symptoms, despite not being any proof of the initial infection. http://www.ncbi.nlm.nih.gov/pubmed/22690926
     
  19. Anne LiConti

    Anne LiConti Waiting for Rituxan

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    Interesting, my CFIDS doctor said to me about a year ago that some patients with CFIDS actually have Lyme disease.
     
  20. alex3619

    alex3619 Senior Member

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    Hi Anne LiConti, your disease history is almost an exact match for mine, including duration. In my case it was measles encephalitis as the probable trigger in 1968. I too have hopes for Rituximab. Bye, Alex
     

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