Discussion in 'Fibromyalgia Main Forum' started by spacee, Dec 17, 2010.

  1. spacee

    spacee Member

    Got my results last nite.

    Just to let you know.

  2. Elisa

    Elisa Member

    So glad you got your results...

    When you think of the severity of this illness, how hard it is to get rid of/recover from, and all our downtime in our Garnett Hill PJs (haha) it makes a lot of sense.

    I got one part of my test, the culture/PCR (negative, am shocked) but have to wait another 6 wks for the serology (they didn't run it, as they were supposed to). I guess lots of people are positive for one test and negative for the other.

    It's a lot to digest - the test results - no matter what...

    I can't wait to hear from you when you tell me/us that you are getting better - that's the day of dream of! I think it's around the corner...

    God Bless,


    Did you have both culture/PCR and serology? Were they both positive? I guess I'm wondering how it's turning out for most people...Although I heard of someone today who had both tests - both were negative - and then had a biopsy and it was positive - so you wonder...

    [This Message was Edited on 12/18/2010]
  3. heapsreal

    heapsreal New Member

    You know what your aiming at now. Will you go down the antiretro line soon? Did u ever get those results of that test u had many years ago HIV lite i think i recall?

    good luck
  4. spacee

    spacee Member

    I had both tests done. The serology was positive and the DNA culture says
    pending with a box around it but it also says None Detected with no box around it.
    A bit confusing since the serology positive has a box around it.

    I had for a number of years the t=cell count of a patient with Aids who is getting
    opportunistic infections. Which Dr. Straus at the NIH said was Somatization (Mind/
    Body thing). Still have his office notes.

    Insurance won't pay for any treatments at this time. The cheapest thing seems
    to be Ampligen but would require me living in Charlotte and I don't see that happening.
    The antirevirals are terrrible expensive. One of the ones they use is brand new...so no
    generics there.

    A chemo drug shows promise...probably from the patients with prostate cancer. Very
    pricey too.

    Don't think my doc is ready to order any of these until more is published. So whether
    too expensive or not isn't the issue right now.

    Six out of 10 of Cheney's well family members test positive for xmrv. I fear for my kids
    and their families in the long haul.

  5. mbofov

    mbofov Active Member

    I want to say congratulations but that's not really appropriate. But at least it must give you some validation for all the years of being sick. I think I would have mixed feelings about testing positive for XMRV - glad to know and have a reason for feeling so crappy for so long, and then wonder what the heck do I do now. One of my sisters wants me to have the testing done but I just can't afford $600 right now, which is what it would cost if Medicare won't pay for any of it (and there's no way to tell ahead of time if Medicare will pay or not).

    There are some natural (non-prescription) supplements with antiviral properties you might want to try:

    Lemon balm
    virgin coconut oil
    humic acid
    EGCG from green tea (matcha tea or supplement)

    Today I was reading about EGCG being dissolved in coconut milk and then drank (drunk?), as being effective against the AIDS virus.

    Thanks for letting us know - take care -

  6. spacee

    spacee Member

    I printed off a pdf from PR of a 'Natural Protocol to treating HIV/AIDS/CFIDS

    Some of the things I take, some more are recommended by Cheney. More
    by the NFKP.org Not sure about that but it is the Kappa Pathway that is talked

    It seems helpful to me to know suggested amounts (quite large amts) and then
    a maintenance amount too.

    Your's sound yummy :) Someone else keeps mentioning the coconut oil. And
    the EGCG is talked about too. Those two I have heard of. I'll add them to my

    Thanks for the suggestions. Yes, I might not have been tested cept wanted it documented
    incase any of the kids get sick. I think if we feel this bad for so long, it's gotta be it and
    why not spend your $$ on trying 'treatments' to feel better.

  7. karynwolfe

    karynwolfe New Member

    Hi spacee,

    I'm glad you got your results back... I hope you are dealing with the news all right.

    Just wanted to say that Olive Leaf Extract is a good anti-retroviral.


    There's a lot of information out there about it, if you want to find dosages somewhere. Stay away from anything with a lot of fillers (esp. cellulose).


  8. CelticLadee

    CelticLadee New Member

    I can't say that I am surprised by your test results and doubt very much that you were. In hindsight you have had so many indicators along those lines over the years. Now you know for sure what you are up against as the puzzle is coming together. I will be keenly interested in following your progress as you decide what treatment you can do. I hope you will share often so we can not only learn from you but cheer you on. I also hope that you will be able to gain much of your health back before too long. All my best. :D
  9. spacee

    spacee Member

    I had kinda forgotten that I printed out a pdf of how to treat retroviruses naturally...the mention of OLE jogged my memory. I was planning to look at it after Christmas and that
    would be NOW! Thanks.

    And CL, boy do we go way back. I used a version of the Stratton Protocol you posted
    about. It brought my ANA down from 1280 to 360 and my sed rate normal...woohoo!!
    A big thanks to you for that. Shocked the heck out of my doc. :)

    I think I have done my crying about it....loss of 25 years. Was able to tell the son's
    about it without scaring them. But you know how normals are....never think it would
    happen to them. Hoping it won't. Cheney's writing that 6 out of 10 relatives of CFS
    patients testing positive for XMRV doesn't sound good.

    Hoping 2011 will bring new beginnings for all of us!!
  10. CelticLadee

    CelticLadee New Member

    Always so great to hear of anyone benefiting from a treatment. You and I both have certainly tried a lot of things over the years with hope for a good outcome. LOL Always fun to give our docs a good shock. ;) I continue using a version of the Stratton Protocol along with Lauricidin as I tested positive for some reactivated viral infections. I was going to test for XMRV until my doc lost faith in the test so now am waiting for "the more accurate test". Seems no hurry with no treatment plan for it anyway. I will avoid anything known to cause replication such as hormones, etc. Not sure why people think OLE would be good anti-RETROvirals. Viruses and retroviruses are different animals all together so to speak. Do not know why anyone would think OLE would help? Can you explain?

    You got that absolutely right. Especially the younger normals... they truly believe they are invincible. After I read Cheney's report I shuddered to think of any of my loved ones living through this hellish disease as we have. No one can fully realize it until it is upon them. Words cannot describe it adequately IMHO. I believe normals would be very afraid if they realized it all.

    Well, I too hope 2011 will bring new beginnings for us cause it goes without saying we aren't getting any younger!!

  11. spacee

    spacee Member

    The lauricidin. Had not heard of it. Knew I have some viral reactivation too. Was
    thinking about going back on TF's but this sounds really interesting.

    I read the link to the study of OLE. It was from 2003-2008 in NYC. They had noticed
    that about 50% of the HIV patients tried other things with their HARRT meds and wanted
    to see the effect.

    Now, I didn't see the results listed but a while back there was a thread about it turning out
    in a study that OLE had a positive effect on MRSA and a some things I can't remember cuz
    they didn't seem to affect me. SIL had MRSA of the lung so I told her.

    I have the nail fungal issues too. Hope Lauricidin helps that too.

    Again CL, you have popped in at the right time!
  12. karinaxx

    karinaxx New Member

    I do never know what to say ? Congrats or I am sorry ?

    Where did you test ?

    Anyway , thanks for letting us know.

    (By the way, did you receive my pm at mecfsforums?)

    Hugs Karinaxx

    [This Message was Edited on 12/28/2010]
  13. CelticLadee

    CelticLadee New Member

    When you get the Lauricidin go very slow and easy. Some cannot even tolerate 1-3 of the tiny pellets at first.

    I have been on one heaping scoop per day for many months now but no way could I have done that at first.

    At first I took 3 pellets per day for a week then each following week I would increase my dose by 3 pellets. (That is too fast for some though) When things got too rough I would skip a day.

    You know how to pace yourself by now as I know you have used TF's etc. Works much like that. Just be careful as it really stirs up the hornets nest so to speak.

    The EGCG from green tea sounds interesting. I am going to look into it next.

    Sorry previous replies I forgot to break up my sentences. So hard to read. :p

    Also... wanted to say... my doc saying that about waiting for the more accurate test was absolutely no slam on the test you or anyone have done. Wanted to make that clear but I don't think you took it wrong anyway. :) Just wanted to be clear. ;)

    My doc had several patients come up negative via VIPdx and is under the impression a more accurate test is coming down the pike in the new year. I don't know anything about that.

    Thanks... I will look more into OLE as well. I lived on it the first couple years of my illness. It did not seem to be strong enough to do much for me though.

    I was using high quality stuff via my naturopath during that time. Ancient history. :p

    Take good care. CL

  14. heapsreal

    heapsreal New Member

    just your quote on saying u wont take hormones to increase viral replication, i think this thinking is not quite correct, hormone therapy can be quite useful as out of 'whack' hormones are probably more of a concern in weakening our immune systems, supplementing with hormones and keeping them within the right ranges can only improve our natural immune function. maybe dosing too high could increase viral replication but hormones go along way in strengthening our systems and better deal with stresses like infections. Things like low dhea levels or pregnenolone levels are knowm to correlate with poor immune function so supplementing with these hormones to within the right ranges is to our advantage.

  15. spacee

    spacee Member

    Katrinaxx. I will have to go look tomorrow. I don't think so. Had relatives here and
    brain fog has been worse.

    CL....Oh, Thanks for the warning!! I read to start low, but I probably wouldn't have
    started that low. I may just take 1 pellet!

    I think I have heard it both ways with the hormones...just fwit'sw. But my body doesn't like
    DHEA though Cheney does.

  16. CelticLadee

    CelticLadee New Member

    Well Heapsreal, this is my take on the subject. ;)

    When I heard Dr. Judy Mikovits say that we need to avoid androgens as they appear to promote XMRV to replicate I made a mental note to avoid supplementing hormones until they know more and/or if I find out I am not XMRV+.

    I will not take steroids for the same reason. I would rather be safe than sorry.

    Vitamin D3 gives me hell when I increase it and they say it is good for the immune system too. It isn't even a vitamin but a seco-steroid so I find my reaction to it very interesting indeed.

    Yes do Spacee. Until you know what your reaction will be with the Lauricidin go easy. I must warn you not to ever take it with warm/hot beverage or food. It melts it in your mouth and tastes like pitch. Horrible!

    For that reason never chew/bite the pellets either. I eat a meal and then swallow the pellets down with cold water. The meal helps my tummy from burning from it.

    Thankfully, over time I have became less sensitive to it as I seem to as a rule to all the stuff I taken.

    Company gives me brain fog worse too. Hang in there. :)

  17. heapsreal

    heapsreal New Member

    Please dont take offense to what i have written, its just that i dont think its black and white in reguards to hormones. Its just that there are many health problems in reguards to low hormones and im refering to optimizing hormones correctly. Whatever treatment u follow is a personally call with the help of your doc and your take on being conservative in this reguards is a reasonable stand to take and further research will show us more. There are cfsers who have been helped with hormone modulation and what u are saying could mean that your against their treatment, i just dont think we should close our options so quickly to any treatment, but caution is always necessary until all the information is out there. As this illness seems to effect everything, i personally think its reasonable to look into many treatments, alot of us are going to need more then one avenue to treat this thing eg antiviral, retroviral immune system, hormones, supplements etc

  18. CelticLadee

    CelticLadee New Member

    Of course I do not take offense to what you have written. I agree that everyone must make decisions based on what is best for them.

    I was merely telling Spacee what I am doing and why. Let me be clear. I am not against anyone's treatment and never have been. That is their own business, not mine. No problem here.

    I do so appreciate Dr. Judy Mikovits for boldly stating what she knows at this time. She is a true patient advocate along with being a gifted scientist. I personally am so grateful for all she shares with us.
  19. skeptik2

    skeptik2 Member

    Dr. Deckoff-Jones wrote a column today. Many of you probably
    know of her Rx blogs.

    She gave the "bad" facts about retroviral treatment she and
    her daughter are on, she is so straight-forward and honest, I
    am very impressed. Heard she's new WPI Medical Director,
    too! Should be interesting...

    Spacee, I hope you find the right combo that works for you;
    I believe personally that meds and naturals will be the thing
    we'll have to do!

    Best to you all...and HAPPY NEW YEAR! So many exciting
    things going on!

  20. spacee

    spacee Member

    Dr. Judy is so great and I had thought I read that Dr. Deckoff-Jones had taken some sort
    of position at WPI. She's a great person to have in our struggle.

    Yes, skeptic, for me I seem to have a lot of viral stuff going on and glad to find
    the naturals. Funny how CL has dropped in at the right time over the years.
    She has been a big influence for me.

    I tried Cheney's hepasunate. Gee, that stuff really felt like it was killing a LOT of stuff.
    Seemed very strong at even a small amount. Then the NTFactor. Ramped up slowly
    to 1.5 but still the herx. I guess I am going to go through a good bit. It's what I
    planned to do for my retirement years :) Why travel when one can herx? sheesh.

    Thanks for all the well wishes and Best to all of you!