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ME/CFS: In Free Fall Through the Looking Glass
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I tested Negative

Discussion in 'XMRV Testing, Treatment and Transmission' started by imready, Dec 16, 2009.

  1. spit

    spit Senior Member

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    There's no way of knowing how it's all going to pan out, of course, but I will say that I have personally seen AIDS patients who were on death's door recover incredibly well on the right set of drugs. It's unlikely that we'll ever be able to rid them of the virus, but for lots of folks, the newest drugs help make it into a chronic but manageable illness. Even for many of those who were very, very sick before.

    Even if XMRV is found absolutely to be the cause of CFS, it's going to take some time to find the right set of drugs for it -- but there's no reason, IMO, to think that long-term patients wouldn't experience much recovery once those drugs were found and treatments really began to work.
  2. _Kim_

    _Kim_ Guest

    Jim, I didn't know/realize that you tested positive too! Woah, that's something - both you and your fiance have tested positive for XMRV. Gulp!

    And thanks for the info re: Valtrex. I was taking it when I had my blood drawn and wondered if it would skew the results.
  3. KC22

    KC22 Senior Member

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    Jim and others...

    I see Dr. Mikovitz said valtrex would not skew the xmrv results. Do you know if she said anything about valcyte??? Thanks.
  4. spit

    spit Senior Member

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    ladybugmandy -- depends on what you mean by "fully recover"; they still have HIV, some still have AIDS and immune dysfunction, and the drugs are numerous and come with plenty of side effects on top of it all. So they're still sick. But they're often more able to manage their sickness and still enjoy life than I think any of us could have imagined back in the 80's and much of the 90's.

    I have, just as a single example, a friend who was seriously near death, had a T cell count of 15 and several opportunistic infections that landed him in the hospital, and all signs pointing to us all having to say goodbye soon, and who is today doing quite well, healthy and happy and able to go hiking and has gone back to college to pursue a degree (at 60 -- which is awesome in itself).

    There's quite a bit of reason to hope even though it's very early, and there's just no reason to assume that treatments for XMRV, if it does indeed prove to be the problem, won't be helpful for those who have been severely ill for a long time.

    re: AIDS dementia, there are a lot of different causes for it, some opportunistic, but HIV can also itself cause inflammation in the brain. I've also seen aggressive treatment of HIV improve the associated dementia, but I think the degree to which people recover from it varies some. I'm a little out of the loop now as to progress in this area, though -- most of my knowledge here comes from several years at a job where a huge number of my customers were HIV+, and I've not kept up as much as I'd like since I left there.
  5. Advocate

    Advocate Senior Member

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  6. jackie

    jackie Senior Member

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    Hi Ladybug!:) I THOUGHT I saw info in a thread somewhere, that Isentress (Raltegravir), an HIV drug, was showing some promise in XMRV, in a lab setting.

    Does that name ring a bell? I just can't remember. Rather than AZT? (not sure?:confused:)

    In my case, when I mentioned any possibility of needing an ARV (I'm already on an AV - and will most likely be taking some dosage for life)...IF I tested and was pos. for XMRV....my Doctor simply said "We'll just ADD an ARV (as in a "Cocktail"...but didn't specifically name one).

    BTW he also treats HIV/AIDS patients, so I trust his judgement).

    It's my understanding that XMRV (Gamma Retrovirus) is for life.....but as Spit said (and I personally know AIDS folks who are doing quite well on their meds protocols, too) we WILL be managed!

    Again, going on my faulty memory with this!;)

    PS...re: Dementia, my Neuro recently dx'd me with Mild Cognitive Impairment (early onset Dementia) and prescribed Aricept and Amenda (to "slow progression", as he said)

    BUT I wasn't comfortable with that dx (I tend to lean towards reduced blood flow to the Brain, as well as Enteroviruses..."In through the nose=into the Brain" stuff!),

    So I brought in studies, showing the types of Mem/Cog probs that are present in ME/CFS - AND I did it on one of my better days, when I could articulate!lol!:p...and he backed off the dx for now! I requested a SPECT Scan to perhaps prove MY point...but he refused (my Ins. won't cover it without a BIG fight!:()

    jackie:)
  7. fresh_eyes

    fresh_eyes happy to be here

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    re AIDS dementia: I have been in touch with the mom of the little girls with "childhood alzheimers" mentioned at the CFSAC (as XMRV+). Their dementia is caused by a buildup of cholesterol inside the cells of the brain. She is working with AIDS docs b/c apparently HIV causes the same thing, it hijacks the cells' cholesterol mechanism and uses the excess cholesterol to help it replicate or something. At present the girls are on an experimental treatment, iv cyclodextrin (a simple sugar, used as a food additive) that has the capacity to bind cholesterol. Have not yet heard how it's coming, but they haven't been doing it long.
  8. Katie

    Katie Guest


    Sounds like Brainfog. I was looking for my mobile yesterday and I was already holding it, these things happen. I don't know, maybe I've put so much down to ME that I've not thought about scary things like dementia, even when I've struggled with comprehension and speaking. On a personal note, I see early signs of dementia in my father and my grandfather suffered from it, it just seems different to brainfog because unlike dementia, it does go away and is dependent on where you are on the scale.
  9. Marylib

    Marylib Senior Member

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    For Levi and Ladybugmandy

    Nah, Levi, that ain't dementia. Otherwise, I know a whole bunch of otherwise healthy "demented" people looking for their gloves and glasses while they are wearing them. :)

    For Sue, I know how fragile you must be -- all the ups and downs in your hopes and frustrations -- and am sending you a big cyber-hug.
  10. Koan

    Koan Be the change.

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    Don't forget what Donnica Moore said re the fog: It's not forgetting where your keys are, it's forgetting what they are for.

    That's pretty disabled. But, it can and does clear.

    whew, huh?

    yeah!

    ETA I just had a really good example. I have been struggling in my tiny kitchen - this is a theme for me :p It gets harder and easier to deal with this kitchen which would be a challenge for all but the most physically Zen - tiny, badly set up, almost no counter space, etc. But sometimes I'm on top of it and sometimes it gets away from me.

    For a period of several weeks, some time ago, I could not figure out how to do dishes. I would go into the kitchen and pour detergent on them and then rub away at them with my fingers, struggling against plunging blood pressure and totally confused as to "how" one does dishes. After weeks of this, it hit me: I needed a scrubby thing or a sponge or something! One does not to dishes with soap and fingers! Eureka!

    Today, I was dealing with a kitchen which had, once again, gotten away from me, cognitively. It was unworkable, overwhelming, smaller and less functional, somehow, and had been for weeks. Then, I realized that there were two big, empty cardboard boxes - which I had, of course, always been able to see - stacked on top of a little cupboard, taking up valuable surface space and crowding the already tiny room. But, it took me weeks and weeks to "see" these boxes, understand how they were impacting my cognition, and realize I could quickly fold them and put them in the recycling!
  11. Jim

    Jim Senior Member

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    valcyte

    i did not ask dr mikovitz on valcyte, but i would think u can infer it will not interfere with xmrv testing if valtrex does not.

    jim
  12. jackie

    jackie Senior Member

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    Levi...I agree with the brain fog idea (and your glove incident!)

    Several times I've staggered around the house crashing into things, frantically searching for my reading glasses (AND wondering why my vision seemed so BLURRY?) when - you guessed it! - I was wearing them!

    Lots of times I'll point my cell or cordless phone at the tv...and be irritated that the "numbers" I'm trying to press won't change the channel! It seems these experiences are universal to us.

    Katie...I must admit that I didn't react well to my Neuro's "pronouncement" of MCI - it cut so close to home for me (I was relieved when he withdrew it!).

    The year before my final down-turn into full blown ME/CFS, my Dad was dx'd with Alzheimers. I moved him into my house and was his caregiver until he died (in fact, other than a visiting nurse once a month and a home healthcare aid that I had for 2 hrs. per day/5 days per week, I was on my own with him).

    It was rough...he also had "Sundowner's Dementia"...so there I was trailing around the house after him, all night long (like a little ghost!)...trying to stay awake AND trying to keep him from burning the house down! The worst that he did was to throw my poor cat off the deck! (he landed, very cat-like, on his tiny feet and was none the worse for wear...I, on the other hand, sprouted some gray hairs that day, I can tell you!):eek:

    Anyway...I feel I can comment (as a layperson, only) on the many differences I've noticed between classic Dementia (as In Alzheimers, for example) and the brain fog (with memory and cognitive deficits).

    Koan...what happens in your kitchen happens all over my house!:eek: I'm vaguely aware that something isn't "right" in a room - something is hampering me for instance...but it may take weeks before I grasp the most simple explanation or solution. I say to myself at the time (when I give up struggling to find the answer) well, maybe I'm just too tired today or maybe the pain is getting to me. But that's not it...the truth is I can't figure out what to do! Period.

    BUT...I always EVENTUALLY do!

    Once my Dad began to exhibit symptoms - he never went back...his was a slow but steady march into oblivion.

    Your example of what SHOULD be the obvious, as in how to wash a dish, is perfect!

    I have a relative with ME/CFS and when she has PEM, she cannot remember how to make a sandwich! She takes out the ingredients...puts them out before her....but simply can't figure out what to do next! This, of course, only happens when she's crashing...the rest of the time she's fine in the kitchen!

    jackie:)
  13. jackie

    jackie Senior Member

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    Sorry (that's a whispery sorry..so Jody won't hear)....Have I hi-jacked again? I keep doing that, over and over! This thread is about XMRV...I'm posting about Dementia...and I say I'm just fine!?:eek::eek::eek:
  14. Koan

    Koan Be the change.

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    Jackie,

    I have to give you a hug and, while I'm a real hugger, I'm not much of a virtual hugger but...

    How kind you were to take care of your father so tenderly - like a little ghost. And, how lovely that you can speak of it with love and tenderness and even humour over what had to be a terrible moment (your wee cat) in a very painful time in your life.

    I am really moved by your story. HUG!

    And! Yes, the way you described the cognitive dysfunction was perfect! Exactly right! Yes and yes, again!

    HUG!
  15. joyscobby

    joyscobby Senior Member

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    I have wondered on and off over the years if I have auld timers (as I call it saves on spelling) but it has not been progressive and the degree of the problems varies depending on my general level. A lot of the problems are akin to specific learning difficulties such as dyslexia and dyspraxia. I have been midely dyslexic from birth but my sons specific learning difficulties are sever.

    The main problems are apart from reading, writting and spelling are short term memory problems, sequencing, cordination, left right confusion, word recall etc. i cannot recall them all but i have a wide experience with other sever dyslexics and they also crash. They also have problem with stimuli such as light and noise. Also food allergies and intollerencies and other alergies. I have also long suspected that many are on the autistic spectrum including my son.

    It all seems so similar to brain fog issues that ME?CFS people report. In light of XMRV and some of the possible connections it will be interesting to see if there is a connection. If I turn out to be positive and things pan out re it being causative to ME then it will be of course necessary to test my son.

    In the meantime there are copeing stratagies that can be used to help to some degree but beyond me at the moment.
  16. Koan

    Koan Be the change.

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    Hi Imready,

    You sound ok about this. I really don't know how I'd feel in your shoes. Our illnesses, in terms of onset and reactivated viruses are very similar - my money would have been on you testing positive.

    However, I expect that, at least in my case, the virus may enter some kind of latency which may account for the relapsing and remitting nature of the illness. I am, of course, talking through my toque because I know nothing about viruses.

    Nevertheless, Nancy Klimas predicted that there would be people with ME who would test negative even though she believes XMRV is probably the biggest player in the viral tournament for our cells.

    More uncertainty... but, as you say, you're an old pro at waiting and uncertainty - aren't we all.

    all the best to you,
    k
  17. Koan

    Koan Be the change.

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    You know, Joyscobby, I was never identified as dyslexic as a child but I know from working with children with a range of learning issues (first career, pre ME) that I understood a lot of their issues intimately.

    I had no trouble reading and don't remember learning to do so - it came like speech as a very natural thing. But, I could never spell; I was horribly disorganized; my desk at school was a disaster area; I have never had any sense of direction - meandered my way to school every day with no real idea how to get there, seriously, I was lost 2x a day, every day unless I walked with another child; could not find my way around my highschool, ever, at all, and had to follow other students or was late for any class I had to find on my own... these are the things that make me wonder if all of this did not start earlier than that flu-like illness at 27. Interesting.
  18. jackie

    jackie Senior Member

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    Koan...you're a very good hugger, I can tell! And I needed one right about now!

    I have to add one thing about my Dad (since I've probably screwed up this thread anyway!).

    This might sound kind of woo-woo...but I believe that my father was quite aware of the toll it was taking on me (mental, physical and spiritual). I NEVER complained...never was impatient or showed any signs of stress or despair...but he was a very intelligent man.

    He was also a very strong man (an "Indiana Jones" type adventurer, complete with the hat!) and at the end I had to feed, bathe, shave him and much, much worse....the utter humiliation it must have been for him. Two weeks before he died, he somehow developed a case of pneumonia (I was very careful to watch for signs of aspiration with his food, but who knows...?)

    Anyway, I was so tuned in to him (at that point he had no lanquage - we "communicated" by look, touch and by a sixth sense, I believe) that within a few hours of developing pneumonia, I had him rushed to the Hospital and on meds.

    He stayed for 2 days...and I was told he was fine, infection under control and would be discharged to me in the morning.

    One hour before I was to pick him up and take him home...he went to sleep and died. THAT was his gift, his sacrifice to me. He loved me that much. This act of "love" on his part, affected me so profoundly...I've never been quite the same.

    Thanks for your kind words! Oh, this happened some years ago...and my wee cat Robbie (Robert Browning was his name) has since shuffled off his "mortal" coil...his final resting place - in the back yard (with all the others:eek:)

    jackie;)
  19. Koan

    Koan Be the change.

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    That is a profoundly beautiful story, Jackie. Few people experience that kind of love in a life. What you each gave the other is really beyond words, isn't it. It may even have required the dreadful intimacies to shake off all the ways in which we keep our selves apart from each other. You had to transcend when you could, somehow.

    I don't think it's woo ooo, at all. People who provide palliative care talk all the time about people choosing to die when it is right for them and those they love.

    Thank you so much for sharing that piece of yourself. I will treasure it.
  20. myco

    myco Guest

    Most of you seriously need to buy the documentary UNDER OUR SKIN. Just google it. What Kurt, others are saying about Lyme is completely untrue. You need to see a real LLMD, not a ID Dr. Get tested for Borrelia, bartonella, babesia, mycoplasma, rocky mountain spotted fever, chlaymidia pneumoniae. These Dr's have treated tens of thousands who were told by reputable CFS Dr's there was no cure (me for one) and to "wait". I'm glad I didn't. It was worth all the antibiotics, herxes, and exacerbation of symptoms, to now feel completely well and live a full life.

    Seriously folks, don't wait around for XMRV, treat the bacterial infections and your immune system will take over. My viruses like CMV, EBV, HHV-6 are gone and I never touched an antiviral.

    Just watch the documentary and get tested. If you have a reaction to something as benign as Doxycycline you are INFECTED. Many of these antibiotics are used long term for chronic things like acne etc..with no problems and no side effects. If you have problems detoxing all experienced LLMD's have detox remedies you can use as binders to get the toxins out of your system. I was very fearful of taking antibiotics, but am so glad I finally bit the bullet. These antibiotics are so much less toxic than the treatment you are facing if you try to treat XMRV (i.e HIV drugs).

    I don't get the viral encephalopathy thinking. I had severe encephalopathy but it was bacterial. Seriously, after 1 month of Rifampin and Zithromax (I took 6 months all together) my head was clear as a bell. 3 yrs ago I didn't even know how to find the local supermarket.

    If I have helped one person here I am grateful.

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