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1. • CommentAuthorNancyg
   • CommentTimeMay 3rd 2009

    # 1Report Post
   Johns Hopkins and some other teaching facilities have done trials and I think are now doing the procedure of autoimmune reboot. It is similar to bone marrow transplant. Using Cytoxan they kill off your immune system but save a few cells. Later they re-introduce some of those cells and your immune system is supposed to reboot itself. It's risky, there is no guarantee but there have been some pretty astounding successes too. I'm to the point of being willing if I can find someone who will take me. I have so many AI's and I'm soooo sick of being sick. I believe, for me, it's worth the risk.
2. • CommentAuthorvlwood
   • CommentTimeMay 3rd 2009

    # 2Report Post
   I haven't found anything about it. Please post if you find more information.
3. • CommentAuthorNancyg
   • CommentTimeMay 3rd 2009

    # 3Report Post
   Check out this link: http://www.neuro.jhmi.edu/BrainWaves/Spring2003/MGreboot.html
4. • CommentAuthorvlwood
   • CommentTimeMay 3rd 2009

    # 4Report Post
   Fascinating! Are you contacting places to see if you can get treated?
5. • CommentAuthorNancyg
   • CommentTimeMay 3rd 2009

    # 5Report Post
   Yes, I'm working on it. Wouldn't it be something to wipe out several AI diseases at once? There is a risk of death but at this age and number of AI's I've collected so rapidly....it's worth the risk.
6. • CommentAuthorNancyg
   • CommentTimeMay 3rd 2009

    # 6Report Post
   Here is another interesting article. http://www.medicalnewstoday.com/articles/64250.php
7. • CommentAuthorvlwood
   • CommentTimeMay 4th 2009 edited

    # 7Report Post
   That's wonderful! I see that both articles are about work at Johns Hopkins, but the first one is dated 2003 and the second one is from 2007. I wonder what further progress they've made since the 2007 article was written.
   
   If you can get treated, that could be great. At this point, I'm not sick enough to be a candidate for that treatment, but probably some people on this forum would be interested. Please keep posting and let us know what happens!
   
   I'm also going to give a printout of the 2007 article to a friend whose daughter has ankylosing spondylitis. Thank you!
8. • CommentAuthorNancyg
   • CommentTimeMay 4th 2009

    # 8Report Post
   At 68 they may not consider me at all....who knows but it's worth the effort to find out. I read another interesting article that I should have sent. It stated a hypothesis that CMV, which almost everyone has had, continues to destroy our immune systems over the years and that all AI diseases are actually one disease with varying components. Hence, nearly all death is attributable to Cytomegalovirus destroying us slowly.
   
   I will keep you informed.
   
   Nancy
9. • CommentAuthorvlwood
   • CommentTimeMay 4th 2009

    # 9Report Post
   Since so many autoimmune patients are older women, maybe that won't rule you out. I'm 74 and would try for it if I were sick enough to qualify.
   
   I've read about CMV, too, and similar about other viruses, especially HV6, and also the idea that autoimmune diseases are all one disease. The symptoms overlap so much that it seems possible.
   
   Good luck on getting the reboot treatment!
10. • CommentAuthorNancyg
    • CommentTimeMay 4th 2009

     # 10Report Post
    There is a peculiar coincidence in our lives which probably has nothing to do with it but makes me wonder. Our grandson was born with severe CMV almost 18 years ago. He lay in Arkansas Children's Hospital for 2 months on the verge of death. We were told he would be a vegetable if he lived, deaf, blind, and even if he escaped that, never walk, etc. There was an experimental medication at the time and his parents signed for him to get it. At almost 18 you can't tell by looking at him that there is anything wrong but he is deaf and somewhat slow but very technically savy. He's mainstreamed in school and got a cochlear implant last summer.
    
    I have wondered if there could be any connnection at all. My AID's started in 1981 with hypothyroidism (with antibodies) and I began a slow downward spiral but in 1989 I really started having problems and by 2002 was in much deeper trouble. Just a curious thought but I may ask someone next time I see one of my specialists.
11. • CommentAuthorvlwood
    • CommentTimeMay 4th 2009

     # 11Report Post
    So you had autoimmune disease(s) way before your grandson came along, but you're wondering whether the same virus could have affected both of you in different ways? Maybe, but you know that various types of infections, including fungal, viral, and bacterial, have been at least suspected of triggering autoimmune problems, and so have various toxins, mercury, fluoride, maybe other chemicals and dental materials, medications, and vaccines. Of course you can ask what they think.
    
    It's great that your grandson's parents found out about the experimental medicine and got it for him.
12. • CommentAuthorAaronCW
    • CommentTimeMay 6th 2009

     # 12Report Post
    This is the first time I've come across this therapy and it seems very interesting to me. I have had ITP for almost 10 years now but in the last 2 months my condition has changed to an undiagnosed pancytopenia which the docs suspect is some sort of autoimmune-driven bone marrow failure. I am now refractory to the prednisone therapy that had previously controlled my ITP symptoms and am infusion and growth factor dependent. The docs think that I may need a bone marrow transplant. I just happened to come across this thread and it seems as if it may have the same curative potential, along with its own set of risks, as a BMT.
    
    I plan to mention this to my doc and see if she is familiar with it.
13. • CommentAuthorpammy
    • CommentTimeMay 9th 2009 edited

     # 13Report Post
    Oh my God. I had a hysterectomy at ________and it got infected. I ended up back at _______ with a team of docotrsd standing by to start chopping my leg off if they needed to. Thank goodness the 2 days of continues IV antibiotics of different types took care of it, but only a few months later I got my first AI diagnosis and in the last year I have received an additional docen or so, but my WBC'S are always still high. Could that infection have triggered this down whirl spiral?
    
    Nancyg I know exactly how you feel. I feel like my life is out of control, every time I go to a doctor I get a new diagnosis. I wrote them all out in the blog where everyone was sharing theirs, did you?
    
    We might be living paralel lives even though I think I may be a tad bit younger by your comments.
    
    I had a really bad experience with ________ at the beginning of all this they treated me like I was lying and not sick enough to be of any importance, so I have been reluctant to go back, but I would like a shot at a normal life. I am rarely able to get out of bed. It has crossed my mind several times to write to them with a copy of all my positive tests and ask them if they think I am sick enough to help now.
    
    Hang in there.
14. • CommentAuthorwishiwashealthy
    • CommentTimeSep 13th 2009 edited

     # 14Report Post
    I wish this therapy WAS available NOW...Id give it a shot without thinking twice !
    
    Anyone know where it IS available ???????????????????????????????????????????????????????????????????
    
    My only searches come back with the usual Clinical Trial..
    
    And these bloomin trials have been going for 10 years...dammit they know it works lets get on with it !!!!!
15. • CommentAuthorNancyg
    • CommentTimeSep 13th 2009

     # 15Report Post
    I know that it was being considered for a friend of mine who lives near Johns Hopkins. She has so many AI diseases that she spends about 10 months of the year in the hospital (accumulatively). She began getting somewhat better and it was dropped.
    
    I've about given up on the idea. Had planned to go to Mayo in FL but instead I'm seeing an MG specialist in Tamp in January. My neurologist is about to give up on me.
    
    I just saw my endo who decided I'm under medicated for Addison's. We upped my dosage and it has helped. Was spending most of my time in bed sleeping.
16. • CommentAuthorMotherof5
    • CommentTimeSep 14th 2009

     # 16Report Post
    Changing your diet is safer and no side effects or risks involved. I would begin there..I have begun there and my antibody numbers continue to come down over the last 2 years. I wouldn't want my immune system wiped out. I think this comes from not really understanding what's happening. Don't assume that just because they are doctors they know what's happening. ;-)
    
    Two sources that both have chapters on autoimmune and what causes it are The China Study
    and Fasting and Eating for Health by Dr. Joel Fuhrman.
17. • CommentAuthoralcyon73
    • CommentTimeSep 14th 2009

     # 17Report Post
    As far as I know they are only accepting people with serious, ends stage autoimmune disorders for stem cell transplants. My understanding is that some people have died and that the "cure" is not always 100%. It is still an experimental treatment , so hopefully they will eventually improve the treatment to the point that it is both safe and effective. On a positive note, I've read of a couple of people who have MS being cured, so there is hope for a cure!
    
    Glen
18. • CommentAuthorwishiwashealthy
    • CommentTimeSep 15th 2009

     # 18Report Post
    Some people die from routine procedures Glen.
    Of course this procedure is no walk in the park..however nor is dying from Autoimminuty
    
    I think the truth is more ..they dont have the resources to cope with a sudden swathe of new potential patients that could benefit from this..if Autoimmunity were put on the transplant procedure work list.
    
    My understanding is that the treatment is still only for clinical trial...please correct me if Im wrong...and it is available in the clinic somewhere ?!
19. • CommentAuthoralcyon73
    • CommentTimeSep 15th 2009

     # 19Report Post
    John's Hopkins has been working wih stem cell transplant. They would be the ones to contact for more information.
20. • CommentAuthorwishiwashealthy
    • CommentTimeOct 16th 2009

     # 20Report Post
    Its still not available for anyone with more than one Autoimmune Disease....its still not in the clinic.
    The FDA sayeth so !
21. • CommentAuthoralcyon73
    • CommentTimeOct 16th 2009

     # 21Report Post
    It's likely that it is not generally available at all without a long list of requirements because it is still experimental. Also, it is not available to people with all autoimmune disorders. It appears that it works better for some AI than others.
    
    The Mayo clinic now has a web page on stem cell transplant and thy list the risks...which are several and serious..
    
    http://www.mayoclinic.com/health/stem-cell-transplant/MY00089
    
    and here is one woman's experience with stem cell transplant,,,
    
    http://www.rheumatoid.org.uk/article.php?article_id=566
    
    Let's hope they get the problems ironed out and bring a cure to us soon.
    
    Glen
22. • CommentAuthorwishiwashealthy
    • CommentTimeOct 16th 2009

     # 22Report Post
    Hi Glen
    
    That was 10 years ago !
    The lady is now on Biological drugs..the side effects include Organ Damage, cancer..so they can kill in their own right.
    Nine months is not as long as one would like for remission.
    One can only guess if she were to have one now if the outcomes would be better.
    
    The Mayo risk list..does not scare me..GVHD listed is not applicable as we are using our own stem cells.
    The risks are fewer than 10 years ago...the technology of transplants has imporved.
    
    The problems currently are...they the FDA will not allow transplants for multiple autoimmune diseased patients.
    And of course its not in the clinic...so its not an option.
    
    Though if you look for clinical trials around the world..there are numerous ongoing for many differing autoimmune diseases.
    
    Millions of people cannot gain access to the Biologicals..like the lady is using to stay alive...one of those is me.
    
    Wake me up when we have any option : )
    
    Cheers
23. • CommentAuthorHelloItsJustMe
    • CommentTimeOct 25th 2009 edited

     # 23Report Post
    Hello. I have a request. Please don't use the abbreviation "AID's" to refer to autoimmune diseases. AI's or ai's suffices. The reason that AI's or ai's (or AI or ai) is a good abbreviation is this: There is an umbrella term that is usable for all autoimmune diseases: that term is 'autoimmunity.' Having autoimmunity is enough to deal with. The very LAST thing we need is for people to also think we are contagious, which we are not. The last thing we need is to reinforce the misconceptions of the general public that autoimmune diseases are all AIDS. If you notice someone use the abbreviation "AID's" please gently ask them to use AI's or ai's instead (abbreviation for autoimmunities). Thank you.
    
    I'm so sorry for anyone here who is dealing with or has dealt with even one ai much less more than one ai. I am currently reading a book called 'The Autoimmune Epidemic' (copyright 2008 by Donna Jackson Nakazawa). I recommend it. Not only for people with ai's but also so that people can help their friends and loved ones who don't have ai's to try to avoid ever getting ai's.
    
    Comment by AARDA: Please note that the AARDA uses AD or ADs to refer to autoimmune disease(s) It has taken the AARDA quite a long time to get people to use AD and we would appreciate it if everyone used it.
24. • CommentAuthorHelloItsJustMe
    • CommentTimeOct 25th 2009

     # 24Report Post
    Does anyone here know what 'big input' at the upper righthand corner of the 'Add your comments' area is all about? I realize I could just press it and see what happens, but maybe someone already knows? Also, '[+]Vanillacons' at the lower lefthand side of the 'Add your comments' area?
25. • CommentAuthorLindaG
    • CommentTimeOct 25th 2009

     # 25Report Post
    Vanillacons are little emoticons that you can add to your text. Like this:
    
    As far as big input--I did click on it and, you guessed it, it reverted to "small input." I think it's defaulted to "big input" to allow a large post--small input might have a limit on the characters that would be allowed.
    
    LindaG
26. • CommentAuthorLindaG
    • CommentTimeOct 25th 2009

     # 26Report Post
    P.S. The vanillacons won't actually show up as the characters until you post your comment--a description will be inserted instead.
27. • CommentAuthorHelloItsJustMe
    • CommentTimeOct 27th 2009

     # 27Report Post
    Thank you LindaG. I really like the little sunglasses dancing guy. Since I'm a U2 fan, I think I'll dub him 'Bono.'
28. • CommentAuthorhazelsoldest
    • CommentTimeNov 2nd 2009

     # 28Report Post
    I agree with the care needed to specify AI as opposed to "aids". In this day and age of HIV being rampant and so little to treat it with we must make sure we differentiate ! Beverly