1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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DR. KLIMAS' patient "FRANCESCA" VLOGS her TREATMENTS & RECOVERY ATTEMPTS from Italy

Discussion in 'Action Alerts and Advocacy' started by lartista, Feb 27, 2012.

  1. lartista

    lartista Senior Member

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    http://www.youtube.com/user/kaiserMECFS/featured;)

    subscribe here:
    https://accounts.google.com/Service...next=%2Fuser%2FkaiserMECFS&hl=en_US&ltmpl=sso:victory:

    Join my VLOG (video log = vlog) on YOUTUBE, come with me working through my attempts at recovery and at time my attempts to just BURN my energy envelope when I get fed up of this illness! I am under the medical treatment of Miami's internationally renowned Dr. Nancy Klimas!

    Diagnosed only January 2011 with ME/CFS: HHV-6, HHV-4, Coxsackie Virus, Supraventricular Tachycardia, VTAC, Myofacial Pain Syndrome & Immunodeficiency Natural Killer T- Cell Dysfunction. After suffering the first two years with "suicide ideation" from not handling the NEUROLOGICAL INSULTS from which no one could explain or validate what was happening to me. I went through 4 years of independent medical examinations to prove I was not malingering (lying) with these bizzare symptoms to be finally diagnosed through a SPECT BRAIN SCAN.

    I became fully disabled in 2006 though the illness struck 2002 and remained under the radar for 8 years while I lost my life... as you all know!

    Open heart surgery mitral valve repair, three mini strokes post open heart, VTAC, nervous breakdown, bladder surgery, and my latest a Meditronic Cardiac Heart Loop monitor surgically inserted under my skin in my chest wall.

    I am now trying to exercise... but slowly... I am an advocate researching all I can about this illness and I can add value with European drugs not available in the USA as I can get them and try them easily that others...

    I was a stockbroker of 25 years, in public office 9 years in Colorado, an internationally emerging artist, mother of two, fitness competition exerciser, award winning environmental grant writer, global wild tiger advocate and now... a ME/CFSer!

    Valtrex alone so saved my life and reduced brain fog, then I found Dr. Nancy Klimas. There are treatments out there, there is help! We must choose our doctors and I believe FIRE them when they will not get on board learning about this illness! So get on board with me and let's shake up these doctors!!!!

    I am also trying to resurect my ART CAREER through being an Art Critic.

    Here's that link:
    http://www.youtube.com/user/yourARTescortFRANKLY?feature=mhee:D

    Cheers!!!!!!!!!!!!!!!:thumbsup:
     
    heapsreal, lnester7 and CJB like this.
  2. Enid

    Enid Senior Member

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    Great news lartista under Dr Nancy Klimas - may everything continue to improve for you. Sadly UK still in the Ark though and we all know why.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Good luck lartista! Look forward to your looking at your youtube video :)
     
  4. maryb

    maryb iherb code TAK122

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    UK
    Good to hear your story Lartista, most of us know the feeling when a knowledgable doc finally tells us what is wrong with us, doesn't make the symptoms any better but boy does it lift you. Good luck with Dr Klimas, I've heard she's great, but not easily accessible for those of us in the UK:(
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    I have had great help too, no drugs, all supplements. I am so glad you are improving. There are great doctors, integrative doctors help me. I hope you feel better and BETTER!:angel:
     
  6. lartista

    lartista Senior Member

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    Hi you guys... I do not have time to read the responses here but I will include one letter to numerous stock analysts who are writing me in private. I beleive my letter will explain who was my target market and my line of thinking. I do not need any one to agree with me as I am a maverick... and it was me i was offering for human sacrifice and the FISH CAME BITING JUST LIKE I THOUGHT!!!! Numerous stock people of money managing firms are nor listening just a little but to us and considering what the chronically ill have to say. Thank, francesca

    "Dear EPE,
    Unfortunately often the wall street area doesn't listen to the people who are ill. They read only information they want and they know nothing about the illness... really nothing about treatments and really nothing often of what they are writing about when it come to this illness.

    I am an ex-wholesaler for accredited investments, ex-stockbroker with over 25 years experience and served 9 years in public office. I know why I was hired and how I was trained.

    My point was in a stupid way to get the attention and then hold the attention of anyone in on wall street. Even if it means sacrificing ME and my reputation, I was willing to do so. ME/CFS has robbed our lives and made us invisible. I plastered the video everywhere on wall street and interesting enough the hits came in. I then saw the men talking about the illness and how they had seen my serious videos. I even started to see a compassionate side come out of wall street.

    My accomplishments to date in life are greater than most people so for that, I was secure in offering myself up for human sacrifice and it worked...

    The ampligen drug hearing is about helping really, really, sick people... I also wanted to see what was the best ADAM Feurestein had to throw out there as the majority of what he is lies out right lies, or manipulated points of view, fact very seldom enter into this. He showed his cards early, which will help Ampligen see in advance of the Dec 20th hearing what was being said on the street. I stayed in close contact with the AMPLIGEN people letting them know what I was doing and where they needed to be watching as soon as the analysts started writing.

    I believe my little piece has influenced a small segment of wall street to listen to the educated sick people and see what they have to say. It is our lives after all and the drugs are for us, not for the stock market to decide our quality of life. That's all.

    Yes ampligen is NOT the fix all... but the CDC has engaged in very likely misappropriation of millions of dollars of our funds to other illness. Why was wall street including that in their reporting... because they do not ask, and they do not really care. The federal employees hung 8 x 11 sheets over their desks saying... I am tired today... I must have CFS.

    President Obama is aware of all of this and has assigned several of his key staff to follow this FDA event. Why was that not mentioned in all the reporting.

    So I in no way am trying to be harsh with you... I just want to enlighten wall street a little better... sometimes diamonds in the rough are hard to spot.... for those who have ADLs of 3 to 6, and if ampligen gave them a 10% to 25% increase in functioning... AMPLIGEN is their world.

    Yes Ampligen may have not done all the best, and may not work for every one (which it does not) and the specialist are trying to isolate in the blood testing who it works best for. That too was not mentioned...

    If the medical industry isolates who responds to ampligen, then there could be an almost 100% positive response rate, how quickly would wall street turn towards ampligen versus bam-ing them.

    Wall street also did not see how close in bed the FDA is with the CDC. With Obama looking in on them, the FDA even with this negative letter, had to change their posture with our illness after Obama's adviser spoke with them....

    I hope this helps... if we (ME/CFSers) do not get a treatment, we are all at very high risk of cancer, Leukemia and lymphoma. My natural killer cell test function was 1.87%, near zero. Zero means cancer is at my doorstep. I take imunovir (and AIDS drug), I take an opioid drug (naltrexone) that heroin drug users take and MS people take. I take 3 grams of valcyclovir that people with herpes 1 and 2 take for 10 days, 1 pill a day for out breaks. I take 3 grams a day for life that is toxic because I have two types of herpes running through my blood infecting my organs....

    So when someone looks at these other issues on the surface, they do not see the DIAMOND IN THE ROUGH. So I used my stupidity and my body to get a predominantly male industry listening and thinking... so I see it as a win for my people.

    I hope this helps. WE ME/CFSers are desperate... I hope this helped... The illness patient community needs to be listened too.

    I would be sincerely interested in your comments.

    THANK YOU FOR YOUR TIME.
    This is just to give you an idea... I KNOW WHAT I AM TALKING ABOUT AND I USUALLY SCORE 99% OF THE TIME in whatever project I touch...

    AMPLIGEN will win... if it is not Feb 2013, it will be soon!

    www.coloradolottery.com/GIVING-BACK/PROJ.../
    (I wrote this winning grant plus 3 others for a total of 1/2 million raised volunteering by myself: Great Outdoors Colorado Jefferson Grant Ranch Nature Observation Park and Learning Gardens $90,000)
    francescaowens.com
    (I was reviewed by the Smithsonian)
    beautyofthebeast.org/
    (I had sponsors galore)
    vimeo.com/53456299
    (I do TV reporting in Italy now when I am stable)
    www.nfwf.org/AM/Template.cfm?Section=Hom...
    (I ran the Tiger art campaign volunteering for them)
    www.cepf.net/Documents/tigerwatch_spring...
    (I worked with biologist around the world)

    Francesca/BustieBB
     

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