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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Gingergrrl's Journey with Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jul 31, 2014.

  1. AndyPandy

    AndyPandy Making the most of it

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    Yes @Gingergrrl43 I agree it's hard not to overdo it when you are feeling a little better.

    I was revisiting material about pacing the other day and one of the things that stood out for me was not just the idea of pre-emptive resting but of additional resting to allow for healing. Something I am working on.

    I imagine that your body is very busy trying to heal and deal with the effects of the Famvir at the moment, so maybe even more resting is required.

    The other message that was reinforced for me was that resting means lying down and doing nothing - no books, TV, IPAD. Just nothing.

    Best wishes Andy
    taniaaust1, Gingergrrl, SDSue and 4 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wouldn't start anything yet until u have a couple of months under your belt,but start looking into things for your immune function to add. Maybe u could slowly accrue enough ahcc over a few months and be able to give ahcc a good run? ?

    I think one has to stay at the top dose of 3000mg a day to benefit. It's mentioned a maintenance dose of 2 tabs, 1000mg, after a couple weeks on the higher dose. I think need to stay at 3000mg.

    Look for other things too, ahcc is just an example.

    Once you clear/ reduce infections you need a strong immune system to keep them down??

    Cheers
    Gingergrrl and maryb like this.
  3. m1she11e

    m1she11e Senior Member

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    I had just recently heard that Dr. Klimas said it will eradicate EBV in a year. I tend to trust her opinion!
  4. SOC

    SOC Moderator and Senior Member

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    Dr Lerner told us to rest while on antivirals to get the best effect. Antivirals only stop the virus from replicating, they don't kill infected cells. Your immune system still needs to do that, and that takes a lot of energy. You need to give your body a chance to do it's work. Resting doesn't mean laying in bed doing nothing, of course, but it certainly doesn't mean doing MORE while you're on AVs. I'd suggest cutting back a bit from your pre-AV activity level and imagine giving those little immune cells that extra energy to do their virus-killing work.

    Do you pace with a heart rate monitor? If not, now might be a good time to start. Walking around a grocery store can be physically demanding because you are on your feet and moving continuously for quite a long time. I can't do it yet, although I can tutor 30 hours per week. It's all about how fast your body can produce energy. If you're using it faster than your body can produce it, you're in trouble.

    Those electric carts in the grocery stores can be a HUGE help. :)
    Last edited: Aug 26, 2014
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  5. NK17

    NK17 Senior Member

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    Absolutely agree with @SOC, pacing while on A/V is imperative, I've learned the hard way!
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @heapsreal, I just started Epicor today which was recommended by my CFS specialist as an immune mod to boost NK functioning. It is a once per day pill and so far, so good. Can you remind me which brand of AHCC you tried? My Dr. recommended it too (but did not specify brand or dose) and then at my prior ND appt, she was against it and felt Maitake Mushrooms (which I already take) were better so it was confusing. I googled some studies and not quite sure which is the better one for me.

    @m1she11e Thank you so much and I had not heard that quote. I trust her opinion, too, and it was very re-assuring. I am more than willing to take Famvir for a year or more if it can eradicate EBV. I will pretty much do anything at this point!!!

    @SOC, I know you are right and I had not quite thought about it in this way. I will try really hard not to over-do it and rest every day regardless how I am feeling. It just feels so good psychologically when I can get something done. Also, my husband is so happy when I am able to go places with him so he does not have to go alone. I have never done the CPET testing and do not know my true HR threshold but I have a good quality HR watch that I wear every day and am careful not to over-do it. My biggest mistake is if I am lying down and then jump up really quickly if the phone rings (or have a momentary lapse and think I am a normal person.) I need to slowly transition from lying to sitting to standing to avoid a huge spike in my HR.

    @NK17, you are absolutely right and as always your feedback is invaluable to me. I take everything in that everyone says and really try to incorporate it and learn from it.

    So far so good, on day three on Famvir :thumbsup:.
    Hanna likes this.
  7. SOC

    SOC Moderator and Senior Member

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    A wheelchair can help that problem tremendously. We got a push chair when we couldn't afford a power chair. Hubby had to push, but at least he didn't have to go everywhere alone. Lots of stores have electric carts, too.

    If you don't know your AT, how do you know you're not overdoing? What measure are you using with your HR monitor?
    AndyPandy and Gingergrrl like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Gingergrrl likes this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    Today is Day 4 of Famvir and the only thing I notice is slight headache last night and some pain down side of my face and under my ribs (which is brand new for me.) I e-mailed my Dr to inquire if this is a side effect vs. that maybe the viruses (EBV, HSV1 & VZV) are hiding in the nerves and therefore the Famvir is actually attacking them and working?!! That is my hope. Either way I will continue to take it religiously for the next six months as planned.

    @SOC, I'm not quite sure how I would get a wheelchair and no doctor has recommended it to me so far. There are many times that I feel it would be helpful but I would never be able to lift or carry it and if I go out alone, would someone have to push me or would it need to be electric? What we have been doing is when I go out w/my husband, he drops me off in front of the entrance (wherever we are going- someone's house, store, etc) to minimize walking and I walk very slow. If I wake up in the morning knowing I do not feel well enough to go anywhere, then I do not go and never feel pressured.

    @heapsreal Thanks for the link to the AHCC mushrooms and I am still keeping it in mind in addition to the Epicor and all the other supplements I am taking. I take Maitake mushrooms at present and need to discuss this with my ND at my next appt. I am not really sure when I will be testing NK function again but I am guessing in about six months? My Dr said this will be VERY slow to change and that I could feel better but the NK# could remain very low potentially.
    WillowJ likes this.
  10. SOC

    SOC Moderator and Senior Member

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    No doctor is going to recommend it for you. You can ask if they're willing to write you a prescription (or whatever it's called) for one. You can buy one at most medical supply places. You can usually borrow them to use in stores, clinics, and hospitals.

    You can also ask if the doc will fill out the form for a handicapped parking placard. They don't often offer that, either. You have to ask.

    Your condition may be better than mine. I can't go out alone unless there's minimal walking -- someone's house, the hairdresser, or the like. So yes, someone has to push me. Many grocery stores and some larger other stores have electric carts you can use. Of course, your own electric cart or power chair is great, but you still have to get it out of your vehicle, which is the problem for me currently. I just can't do it by myself.
    [/quote]What we have been doing is when I go out w/my husband, he drops me off in front of the entrance (wherever we are going- someone's house, store, etc) to minimize walking and I walk very slow. If I wake up in the morning knowing I do not feel well enough to go anywhere, then I do not go and never feel pressured.[/quote]
    Yeah, I used to do that before I did the CPET and found out that was way too much physical activity for my body. I was only increasing my symptoms and perpetuating my illness. I felt better, and my meds worked better, when I wasn't always overdoing when I thought I was taking it easy.

    If you're not HR monitoring with some sense of your AT, you don't know if you're overdoing. You could be fine walking slowly in a grocery store, or you could be causing yourself problems.

    If you can't get a CPET test, you can use this formula to get a very rough estimate of the HR you should stay under -- 0.60(220-age). If you are going over that while walking slowly around the store, you're probably overdoing.
    Valentijn, NK17, AndyPandy and 2 others like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    @SOC, Thanks and it never occurred to me to bring up the topic of a wheelchair or handicapped placard with any of my doctors. I guess I figured that they would recommend it if they think I needed it and I somehow would feel guilty taking a handicapped parking space from an elderly person (whether this is realistic guilt or not.)

    I rarely drive by myself right now (maybe 1-2/x week at most) but my car is small and no where to put a wheelchair and I could not lift or move it myself. If I go to the airport in the future or something with a large amount of walking, I would need a wheelchair, no question about it. But when I mention the idea to my husband (not the airport, just in general) he doesn't see how we would work it out logistically b/c we live on the top floor of a bldg with no storage area to keep it (unless it somehow folds up?)

    My doctors did not feel I was well enough to do the CPET test now and I've been confused how to calculate my true AT b/c I take a beta blocker every morning which helps to keep my HR lower. Based on your formula mine would be around 106. With the beta blocker I could walk around the store and it would be under 106. The times it has gone ridiculously high (in the 170's) was either during REM sleep (which I am lying flat!) or a POTS type episode where I go from lying/sitting to standing and it reaches the 150's. But just walking slowly without lifting or carrying anything it is okay. I cannot walk up any stairs and strictly take elevators.

    The last few months I have had trouble with shortness of breath and chest pressure even when my HR is low which is why Dr. K wants me to do the exercise echocardiogram to rule out some other issues (which could be related to the autonomic dysfunction of CFS or could be separate.) It is still all very confusing to me!

    ETA: One of the absolute most difficult activities for me is standing in the shower and I now strictly use a shower chair. The shower was far more difficult for me than walking around a store and wanted to share that in case it helped you to sort out my situation and your feedback is extremely helpful on this.
    Last edited: Aug 3, 2014
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Many of us use a handicapped parking placard--I do. It is a lifesaver, particularly in hot weather. I have absolutely no guilt about it! ;) "They" would rather see me using handicapped parking than have to peel me off the pavement!

    P.S. Your doc has to know how to fill it in though. There is a "right way" to do it and a wrong way. My autonomic doc taught me the right way--the key words necessary to get it approved. The form can be downloaded from the DMV website in most states.

    Sushi
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl

    @Rrrr just posted on the Gamma Globulin thread:

    Sushi
    Gingergrrl likes this.
  14. AndyPandy

    AndyPandy Making the most of it

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    @Gingergrrl43 I have a push wheelchair which folds up. I can't use it by myself. I need someone else to push it. I didn't bother with going through a doctor. I got mine secondhand via a local Internet site. It has made a world of difference for me.

    Regarding storage, we leave mine in my husband's car. I only use it for going out. I haven't been able to walk through a shop etc for over 2 1/2 years.

    The most important things for me about the wheelchair are that it saves my energy and so I minimise "crashes" and it gives me the ability to participate in life more broadly, including being able to go out with my husband :)

    I have a disability parking permit. I took the paperwork to my doctor and asked him to complete it.

    I had to get over a slight psychological barrier in getting a wheelchair and a permit. Initially hard to accept that I am that disabled with ME and really do need these things.

    Best wishes Andy
  15. NK17

    NK17 Senior Member

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    @Gingergrrl I've asked and provided Dr. K with the DMV form for a handicap placard and for a wheelchair Rx. He filled and signed what he needed to sign.

    At the beginning of this year it was very clear to me that if I didn't have a handicap placard and a lightweight push wheelchair I would become a complete prisoner of my failing body, courtesy of ME.

    It was difficult to admit that I needed this kind of help and support, but after 30 years living with ME, it was also a no brainer.

    If you'd asked me in 2011, right after I was diagnosed, if I thought I would ever need a wheelchair, my answer would have been no, but life is really made up mainly by how we react to what happens to us and ME happened to me.

    The real difficult part in my case is getting my husband to truly understand why I need a wheelchair and the placard and even more difficult getting to push me. Some people just like to bury their heads in the sand ... I've suffered too much in the past because I didn't know what was wrong with me, that nobody is going to stop me now, I might be on a wheelchair (soon one that I can push by myself and maybe an electric one in the future), but I sit tall and speak loud and clear.

    Remember that we PWME have an invisible illness so unlike many other people with a serious handicapping disease, we need to ask and speak up, but just like those others we need careful handling and special treatments, it's not about fussing and whining, it's to gain back a small amount of quality of life.
    Last edited: Aug 3, 2014
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  16. SOC

    SOC Moderator and Senior Member

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    Just a cautionary note, in case you don't already know ;) -- the arm exercise necessary to push oneself in a wheelchair can be as bad or worse for a PWME than slow walking. Manual wheelchairing can be very aerobic. Great for people with lower body paralysis, really bad for PWME.
    Hanna, Sidereal, Valentijn and 3 others like this.
  17. SDSue

    SDSue Florida

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    Well said! In order to use a wheelchair, I had to swallow a LOT of pride and decide that it's really no one else's business why I'm I'm the chair.

    I ordered a $99 "transport" chair from an online retailer just to try it out, and I leave it in my car. If I need to go anywhere, whoever takes me, takes my car. I also asked my doctor (hapless GP) to fill out the handicap parking permit, and she did it without questions.

    I'm still working on the "sit tall and speak loud and clear", as there's a certain amount of shame that goes with sitting in a chair. It takes practice.

    Given the option of sitting at home vs going out in a chair, I'm slowly learning to opt for the chair. And I hate it each and every time lol.
    Hanna, Sidereal, Gingergrrl and 3 others like this.
  18. SOC

    SOC Moderator and Senior Member

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    o_O o_O o_O

    I never thought less of people in wheelchairs. Surely you haven't either...?
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  19. SDSue

    SDSue Florida

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    I never thought "less", but I did feel curiosity and empathy. Wow, you're making me think tonight lol.
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  20. SDSue

    SDSue Florida

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    While in the chair, I do notice that people don't speak to me - they speak to the person pushing the chair.

    That's partly my fault, because I'm in a pretty weak and vulnerable state while being pushed, so it's easier to just sit back and let the pusher do the work - regardless of whether that work is conversation, navigation, or pushing.

    This is VERY contrary to my temperament, but it helps me remain calm and reserve what little energy I do have for the outing.

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