Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hey Jane, I would like to take HHV6 info to my doc.which test shows it best? I know this is a tricky thing for ME people, the right test that shows the damn thing! I'd love to know what to tell my new specialist. Sounds like you have a doc that is somewhat on the ball!! I hope treating for this leads to improvement for you. Love, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi Jan, I suggest you google Montoya's Valcyte trial at Stanford. He is getting PWME with HHV6 hugely better with an antiviral. I'm talking people going from 20-30% to 80% function in 6 months therapy. Also some are trying Valtrex, a similar antiviral and having amazing results. I am desperately hoping I can get my doc to check this out. I have never even been tested. Blessedly my Ruby has never seemed to develop the " ME-like " illness, but I remember back when I ran support groups etc. (15+ years ago) that many people had this happen with their pets and it was in the medical literature at the time. Hope your four leggeds are OK. Anyone else noticed this with their pets? TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 IF it is the HHV6, 6B or 7 causing the 'swollen brain fever' syndrome that would make some sense to me. When I flare, most every day now that is what it feels like to varying degrees. I can FEEL my brain. Tried that 'over the counter' anti viral just once and had a horrible migraine all day and night. If my smooth muscle ANA tested high, I wonder why the Rhuemy never called me back...I found out by requesting my records after having surgery. Test said the high count could be Hep or Liver. Must not have been too serious to the Doc... ? For one year now have been focusing on what is causing this post op pain. I see the gastro ent on Monday. I need to see a colo rectal doc also but none on my plan. Don't you all hate the mis communications and the lack of communication going on with all the docs? Hugs to you all...enjoy reading your posts. Cindee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi Kirsteen! Im thankful for your heart felt wishes for me. I am back to numb in both hands and cannot stand for very long. (hoping that will go away with this retention) Without seeming Negitive, I feel like I've taken a step further into this illness but hope I'm wrong. Only time will tell. (there are other reasons I feel this way but won't bother ya with them now) Huggz and glad you came out to post! Keep it up, we need you! God Bless, > > > , I know I haven't posted anything but I've been so worried about you > - I'm soooo glad to hear there's some improvement. Fingers crossed it keeps > up. Thoughts and prayers are with you. > > Good Luck > > Kirsteen > > -- > > I do note with interest that old women in my books become young women on > > the covers... this is discrimination against the chronologically gifted. > > -- (Terry Pratchett) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi Jane! If your slow, I'm slower! I would also like more info on this blood test that shows elevations. Not to belabour the fact again but this is exactly the type of " help " I am looking for in this group. Other peoples real experiences...not bombarded with so called facts that later we find out where wrong. I dont have that kind of time or energy to go there but this, I want to know more! It is not old news to me either. Love you and nice to see you posting here again! You were gone from us for a bit and wanted you to know, I noticed! God Bless! > > Just a sort of revalation in my doctor's office which is most > likely old news to others here. It was, for me, a truly .. d'oh! > moment such as I seem to have a great many. I NEVER KNEW that the way > in which HHV 6 manifests is IN OUR BRAINS! Damn. Not a rash or anything > visible (always bothered me; now I know WHY), it hangs out in the damn > brain. AND time after time when I feel my sickest, it is without fail > when thelevel of HHV T cells are highest. And. They have not yet FOUND > a way in which to 'track' them in the brain. Like, no way to see the > stupid damn things in a CAT scan, an MRI. Fun stuff. > To learn more, it can be found (perhaps I am the slow one here who > never saw this...)at: www.hhv-6foundation.org. > I wish I was in a better mood; certainly wish everyone well, but MAD > as hell about this! It's like, how DARE you, HHV 6?! OUT! OUT I tell > you!! Love, Jane who is gonna take the hound out now-- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Aylwin, your just one of the best! I am working hard to have this pass...and pass as fast as I can! It makes me mad though that normally the nurses give me my test results from blood tests and this time they will not. They told me that the doc has to call me with them and then she faded out in a mumble. That was on Thurs when the Doc said he would call me on Weds with results. Well I got no call either day and on friday I left yet another message wanting a copy of my blood tests and results and go no response. Well..here it is saturday and the office calle to address a side question of mine that meant nothing but when I asked about the test results they replied...well the doc flew in and out..he will have to get back to you next week! This kinda thing inferiates me but I know to get blown up about it only hurts me so I will give more time but I'm not happy about this. It is too important that a nurse cannnot give me results but not important enough for the Doc to give them to me three days later tha promised? I just don't get it! Thanks for caring and hoping your hangin in there too! Huggz! > > Hey ! I am SO GLAD you are under treatment for this!!! Yes, you take > it easy, you have permission now LOL! Take wonderful care, Aylwin xox > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Yes my cat and I got sick at the same time. She died about a year after we got sick About the virus Dr. Levine in New York City has been testing for that for at least 15 years Not that they do anything about it Carol J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Hi Cindee, yes I can feel my brain inflammation too. Good Luck with the docs. TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Oh my dear, good to hear from you.are you " deflating " well? I suggest you google the hummingbird site for Cardiac effects of ME (all the research), it might help you and your doc pinpoint what is going on. Yes, I've gotten markedly more ill after 20 years of this, some call it " Tertiary ME " as organs like the heart and kidneys etc. toast out. Very common after 20 yrs. But, treat the heart problem, it may help the rest so much! So keep on truckin GRRL! LOVE, Aylwin xoxox Quote Link to comment Share on other sites More sharing options...
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