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Clinical trial testing and Financials - video is up!
Posted: 28 October 2012 08:45 PM   [ Ignore ]  
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We are almost done collecting data—I’d like to see one or two chronic fatigue and/or chronic Lyme disease patients, and a patient with chronic endometriosis, if possible. My husband and I are paying for all testing (including some blood work). I also post the financials for “Prettyill”. Fund-raisers will be needed for treatment trials, and transparency is important. Please let me know if I left you off of the donations list (so sorry!). I am incredibly grateful to everyone for donating for the cause of Invisible Illnesses.

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 29 October 2012 01:39 AM   [ Ignore ]   [ # 1 ]  
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You are amazing!! thank you for the hope you give us all!! I have been hesitant in signing up for the trials because I don’t have a solid diagnosis (every time I go to a new doctor or specialist, I get a new label… none of which string everything together half as much as your work by the way!!) I just wanted to say thank you, for so much- it is incredible how passionate you are!! Im sorry to hear all that you and your family go through- please know that you are making such a difference to others dealing with this stuff too!!

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Posted: 29 October 2012 04:39 PM   [ Ignore ]   [ # 2 ]  
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Dr. D! I am waiting for a call to come by and be tested….. let me know please.

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Blessed are the flexible for they shall not be
Bent out of shape.

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Posted: 09 February 2013 12:11 AM   [ Ignore ]   [ # 3 ]  
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Are you still looking for CFS/ME individuals?  I am interested!  Also, are you still looking for the symptom checklist to be submitted?  I hit another “dead end” today.  I thought POTS explained my symptoms, but CFS seems to be the reoccurring diagnosis.  I got mono 10 years ago, and never fully recovered.  My symptoms have changed a bit over time (sore throat gone, crash after mild exertion gone), but the most consistent is that I cannot put my arms over my head at all without completely crashing (usually within a few hours and lasting for at least a day or so).  I resonate with being an overachiever, having what appears to be Terry’s nails, slight regurgitation on my ECHO, and moving my legs a lot during my sleep study, but my tilt table came back normal.  I was shocked.  I get dizzy when I stand after squatting and get uncomfortable standing still for even a few min./blowing a balloon/singing while standing in church…I also get headaches (migraines?) and am bothered by bright lights, repetitive sounds/motions/touch. (sensitivity issues) My hands/feet get icy to the touch and I’m generally cold.  Thyroid, normal.  I am overweight despite eating healthy my whole life.  During my latest pregnancy, my amniotic fluid levels got so low I had an emergency c-section despite drinking buckets of water daily.  I have chronic neck pain, need full night’s sleep and will have both pain and “allergies” if I don’t get enough sleep.  I can’t seem to make headway on a diagnosis or cure, but have altered my life to manage.  I’m thankful for the research you’re doing, and have gleaned multiple ideas to check into with another new doctor when I find one! smile  Do I fit the bill for the clinical trials?

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Posted: 09 February 2013 03:15 PM   [ Ignore ]   [ # 4 ]  
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Danielle - 09 February 2013 12:11 AM

Are you still looking for CFS/ME individuals?  I can’t seem to make headway on a diagnosis or cure, but have altered my life to manage.  I’m thankful for the research you’re doing, and have gleaned multiple ideas to check into with another new doctor when I find one! smile  Do I fit the bill for the clinical trials?

Hi Danielle, YES on the symptoms checklist! I’ve already completed the pre-clinical trials… I don’t think there is a big difference between chronic fatigue and EDS with POTS/dysautonomia. I suspect that the only difference is in some subtle genetic differences (collagen/fibrin disorders, for example). I think of all of us as having the same condition, but our genetic variations make it manifest slightly differently. The good news? When we treat the same “main dominoes”, symptoms resolve. Yea! Working on wrapping up studies and patents now. Can I assume you are looking into mast cell medications and hydrocephalus? That’s a great place to start! Big hug…

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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