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xmrv+ starting AV's tenofovir and raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by pinkytuscadaro, Jan 27, 2011.

  1. leaves

    leaves Senior Member

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    Be kind to yourself, survival instinct is human's prime motivator, we can't help it :)
     
  2. pinkytuscadaro

    pinkytuscadaro

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    Goodmorning,
    I feel better today. Yesterday I had this inflamed nerve feeling that I get that runs through my nervous system. It is like costant agitation to the nerves: it isn't painful it is aggitating like when someone drags their fingernails down a chalk board, you know that nerve feeling you get when that happens? Well that is kind of how my nerves feel throughout my body when I am feeling this. That is the best that I can describe it, it is awful because it persist. I get this feeling when I am detoxing too: I have tried detoxing for mercury a lot through the years since I had all of my amalgam fillings removed when I was 23 and it was at that point that I started my 1 year downward spiral that I never recovered from. I was also taking L-tryptophan at this time and was diagnosed as receiving some of the toxic stuff that was pulled from the market.
    I really think that the mercury exposure somehow pushed me over the edge. I guess I would have been considered to have CFS since I was age 12 probably at a level of 6 if I had been seeing a doctor back then and if they had even known what CFS was.
    Anyway I am reporting in: I feel pretty good this morning :) I slept last night. My stomach is still very nauseated and I am still a bit dizzy. Yesterday evening I had a feeling of nervous energy that did not translate into me being able to do anything as it was an agitating kind of energy on top of fatigue? None the less I did feel some kind of life :)
    Wishing everybody a return to good health.
    Pinky
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I could tell your nerves were inflamed, lol. I read and reread my post and couldnt tell where i was arguing with u, i was actually agreeing with u . Then i reverted into my male/husband mind and though aarrrrgggghhh angry women, tell her im wrong she is right even if i do know im right or say nothing and hopefully she burns herself out(good to have this option on the net/rare in real life), hide find a safe place to stay like the toilet and take the newpaper with u, then she will only yell at u from a distance depending on the strength of the breeze going down wind, dont look up keep reading the paper, at this point if the kids ask u for something to eat or drink tell them to ask their mother, its the savest option and they will probably hide in their room. When the yelling and the cranky tears are replaced with sad tears its safe to come out, dont say more then 3 words at a time and dont say anything until u giver her a hug.

    HUG HUG HUG its ok, HUG i understand, HUG HUG.

    Its all cool,

    cheers!!!!

    I had my moment a few days ago, lol, we all have them i guess.
     
  4. Daffodil

    Daffodil Senior Member

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    pinky,....this is a very hard ride. it gets better.
    sue
    xoxo
     
  5. pinkytuscadaro

    pinkytuscadaro

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    I had a pretty good day yesterday: I got out of the house for a couple of hours to visit a friend in the hosptial. What is great is that I was able to.
    I even had my driver make two stops on the way home and usualy I come directly home after going anywhere. I was very tired when I arroved home and slept well last night.
    I may even look a little healthier: my coloring is better.
    I woke up feeling like my normal tired self but am now feeling the effects from the outing yesterday and am exhausted.
    I am thankful that I was able to see my friend yesterday.
    Pinky
    I also wanted to post that I am using methylators as well: methylcobalamin
    injections and deplin.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Your looking well pinky.
    How long have u been on the methylators and have they been helping?

    cheers!!!
     
  7. undcvr

    undcvr Senior Member

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    Nice, well done !
     
  8. pinkytuscadaro

    pinkytuscadaro

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    Thank you undcvr heaps daff pam...
    It took me two full days to recover from my outing.
    The stomach upset and dizziness from the RV's is getting better and for the last 2 days I have not felt sick from the RV's. I am not feeling any benefit from them yet but certainly hadn't expected to this early on; I am just happy to be tolerating them.
    Heaps I have been on methylators in the past about 1.5 years ago and did not notice any benefits. I am hoping that with the RV's knocking down the xmrv the methylators will kick in this time. I have added deplin this time, it is a prescription form of activated folic acid that is a lot stronger than the over the counter activated folate I was taking before. I am also injecting methyl b12 once every 3 days and taking tmg.
    The only thing that is new to my regimen or that I have not taken in the past are the RV's.
    Wishing everyone a great day.
    Pinky
     
  9. Cloud

    Cloud Guest

    Hoping all the best for your new venture Pinky. Thanks for sharing your journey with us so that we can learn as well. I didn't realize that you have been at this so many years. 17 for me and I didn't think I would ever reach the place of "losing some life force"...but it has chipped away for sure. We are surely amazing people to make it this long hanging on to hope. I have always wanted to learn to swing dance. I still plan on doing that.

    Yea, I love the Dark Side album too. Die hard Floyd fan. The only music I don't outgrow
     
  10. pinkytuscadaro

    pinkytuscadaro

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    Reporting in: I have now realized that I am sleeping about 2 extra hours a night (12) and I am feeling groggy during the day that is on top of the fatigue and other problems I already have. Maybe it is from the LDN?
    So far I haven't had any reactions from the RV's and or LDN that are not tolerable just a little added discomfort.
    Maybe I should add though that I did wake up with awful depression about 3 days ago: the day I wrote the posts complaining about my doctor experiences...etc. It was pretty bad, I even looked up suicide pills on the internet just in case this therapy didn't work. I only mention this because another friend of mine who has CFS and just started LDN woke up with the same type of feelings yesterday. He says it came out of the blue and hit hard. That is what happened to me.
    I am back to my normal self again but that was scary.
    Yes Cloud, if others only new the suffering we endure. I'm sure it is that way with other chronic diseases as well. Healthy people are so lucky.
    And when one gets really down it doesn't hurt to take a listen to the Dark Side of the Moon either :)
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey pinky,

    LDN temporarily blocks your opoid receptors and maybe yours were still blocked when you woke up. That is one of the reasons they suggest taking it at night--so you can sleep through the period when your receptors are blocked. LDN can build up in some people and they find that they do better taking it every other day to prevent their receptors from being blocked too long.

    Hope it doesn't happen again. I've been taking it for a year and a half and haven't had this reaction, but others have, and this could be the reason.

    Best of luck with your therapy. Everyone is routing for you.b:victory:

    Sushi.
     
  12. pete

    pete pete

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    Hi Pinky , I am pleased to read how well you seem to be getting on even after just a few days . Long may it continue ! I live in England and have just found out I am XMRV+. I would like to be on those drugs too but I can't find a doctor to prescribe for me. Also , although I can get AZT and ten without pers., and it's affordable , ral is $10-15 per tablet , $140-210 a week , and needs a pers., from dr., so not sure what's best . Keep improving , Pete .
     
  13. pinkytuscadaro

    pinkytuscadaro

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    Happy Valentines:
    Reporting in: My stomach is sick everyday after taking the RV's; it is pretty bad. My eyes have started to bother me again: watery, sensitive to light, irritated.
    I had hoped that my stomach would have gotten better by now. I will have to figure out what I can do for this as it could eventually become to much: constantly feeling like I have the stomach flu.
    I am thinking of trying ginger and it may help if I try and eat more before I take the RV's. I do not have a big appetite in the morning so probably haven't been eating much before taking them. Directions say you can take them on an empty stomach.

    I got sick like this on the anti viral meds valtrex and famvir too.

    I am not feeling any difference for the good in my health from the AV's yet but had not expected to for at least 3 months and plan on giving them a 6 months trial.

    Pete: UNDCVR (Jasper) told me that there is a program to get RAL at a discount; I forget the specifics.
    UNDCVR will you please post that info if you stil have it? Thank you in advance.

    Wishing everyone patience and hope.
    Love
    Pinky
     
  14. Navid

    Navid Senior Member

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    Pinky:

    r u taking ARV's with food in your stomach...sorry if this is a stupid question...but just thought i'd check.

    best of luck. hope you see some improvement soon.
     
  15. pinkytuscadaro

    pinkytuscadaro

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    Navid: I am going to make an effort to eat more before taking the RV's and will post back if it helps.

    Sushi: Thank you for the info on LDN; I'm happy to report no more depressive events.
    I know that it messes whith ones brain when first getting use to it but think it has good potential for helping those with
    XMRV so I am glad that I have been able to stay on it.
     
  16. Cloud

    Cloud Guest

    Hey Pinky, sorry to hear of difficulties. LDN....Some it helps, some not. It seems that most often the responses are good or horrible.....rarely hear of benign responses. I'm not sure how long you have been on the LDN, but if I may offer my opinion....I would not start LDN around same time as ARV's because it would be too difficult to tell which may be causing a bad reaction. If you've been on it a while....different story.

    hope your days improve to feeling better soon. Happy Valentines day!
     
  17. undcvr

    undcvr Senior Member

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    I got the information from jimbob and dont really remember the specifics now but if you go to the Isentress website under Merck, there is a link there to the page for the patient's assistance program that Merck is offering. Call them up and they will send you the paperwork.
     
  18. jimbob

    jimbob ME/CFS84-XMRV+

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    You can print the paperwork right from the computer and save yourself a step. Just 2 simple forms.
     
  19. illsince1977

    illsince1977 A shadow of my former self

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    Ginger. Ginger. Ginger. Oh, and did I remeber to say GINGER?!!!!;)
    Try always having a little food right before you take them, too. I think they upset the stomach more when it's empty. Ginger's done miracles for my low level nausea. I like the Japanese style pickled ginger slices, myself. It's an anti-inflamatory, too. Eat enough to get that warm feeling all the way down your upper GI tract.

    Happy Valentine's Day!
     
  20. pete

    pete pete

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    50 miles from london
    Hi All , Thanks for the posts. The assistance for Ral is only for the US I think , correct me if I'm wrong . I think I read that Dr. Brewer said it didn't make much difference which of the two out of the three you were on though most seem to think Ral is one of the better ones. Now I've sent for AZT and Ten . Sorry to hear it's tough Pinky , most ME people seem to react that way , but not HIV patients. Odd. Hope you feel better soon . Pete .
     

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