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How to Sign up for Pre-Testing for Clinical Trials
Posted: 30 September 2012 12:52 PM   [ Ignore ]  
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If you have Chronic Lyme Disease, Chronic Fatigue (or M.E.) or Fibromyalgia, this is thread to respond to if you are interested in participating in pre-treatment trials and/or treatment trials. If you can come to Texas between Oct 22 and Nov 2, please indicate so. If not, please let us know if you are interested in treatment trials only. More information can be found under “Articles and Handouts” (see this listed on the right hand side of the front page of the website). Thank you! smile Dr. Diana

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Posted: 08 October 2012 01:00 PM   [ Ignore ]   [ # 1 ]  
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Hi Everyone, I believe I was able to circle back with everyone. Thank you! It looks like we are FULL for the pre-clinical testing for EDS/dysautonomia. I could use maybe one more M.S. patient and 1-2 Lyme disease patients, and maybe one more rheumatoid arthritis patient. If anyone in your family qualifies, could we consider them? As you know, there is a considerable amount of overlap in our conditions within our own families. Thank you so much, my friends! Anyone else with EDS/dysautonomia or not, I will continue to gather names and contact info for treatment trials, OK? Thank you so much!! This is getting exciting! smile Diana

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Posted: 10 October 2012 10:40 AM   [ Ignore ]   [ # 2 ]  
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Dr. Diana - 30 September 2012 12:52 PM

If you have Chronic Lyme Disease, Chronic Fatigue (or M.E.) or Fibromyalgia, this is thread to respond to if you are interested in participating in pre-treatment trials and/or treatment trials. If you can come to Texas between Oct 22 and Nov 2, please indicate so. If not, please let us know if you are interested in treatment trials only. More information can be found under “Articles and Handouts” (see this listed on the right hand side of the front page of the website). Thank you! smile Dr. Diana

Yes, I am interested in the pre-treatment trials preferably at the beginning of the week of Oct 22nd.  I live in Baton Rouge, LA so it is a distance.  How often would I need to make the trip to Texas? The diagnosis I was given was for Chronic Fatigue Syndrome by Dr. James Osterberger about 12 years ago.  I no longer go to him as my physician.  Other doctors have told me that I may have fibromyalgia.  In 2003, I was forced to take early retirement after working 20 years for the state.  Off and on I have been able to work part time jobs since then…but not consistently.  Currently, I am looking for work but have not been successful.  Unsure of what I can handle…My symptoms have been going on for so long…maybe as far back as 1994 or before.  It is difficult to even describe them anymore to doctors especially since they do not seem to want to hear about the illness.  But, they (the symptoms) have become something I am learning to live with everyday.  However, if there is hope for a better life that would be a blessing.  Thank you for any help and the hope you can give us!
Lea Anne

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Posted: 22 October 2012 03:21 PM   [ Ignore ]   [ # 3 ]  
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Dr. Diana! I am interested in being in the trials, very interested. I am a 43 year old woman from WI, with MANY symptoms - some for 10 years, some for longer. My health is deteriorating fast and I spend more time in bed than I do upright. I was recently seen at the Chiari Care Center in Colorado where it was determined that while I don’t have a technical Chiari, I do have crowding of the right cerebellar tonsil and restricted CSF flow behind the cerebellar tonsils. I experienced a spinal headache after LP, received an epidural blood patch and was headache free for 11 days; 6 of which I was also vertigo free. Although this seems to suggest SIH, my outgoing pressure was normal at 10 cm. The latest MRI suggested demyelination and I am scheduled to see a Neuro in a few days to confirm/deny and a Lyme Literate doctor in late November for Lyme testing. I suspect I am dealing with either MS, Lyme or CCSVI, or possibly all 3! Please, put me in whichever trial you can; I am willing to get on a plane tomorrow if need be! Thank you for your website; once I get rid of this brain fog, I’m sure it will make more sense to me when I read it, LAUGH OUT LOUD! :D I hope you can help, I am nearly out of spoons, and also forks, knives, and everything else in my silverware drawer!! June Rose Cole, Kohler, WI (920)946-0721

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Posted: 23 October 2012 08:34 PM   [ Ignore ]   [ # 4 ]  
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Hi JuneRoseCole, Well, my friend, you are an excellent example of why I am researching all of these conditions! Do you think our simultaneous presentation of so many different conditions is a coincidence? Me neither! smile I gotcha down as interested in treatment trials, but please be sure to keep one eye open for study announcements, OK? I don’t want anyone to fall through the cracks… smile

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Posted: 28 October 2012 11:57 PM   [ Ignore ]   [ # 5 ]  
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Hi Diana,

I’ve just watched the latest video and read the financials. Gee I wish I had some money…
I’m more than happy to be involved in any clinical trials - although I already take a bunch of meds.
Most medications are essentially free here in NZ and my GP is easy to persuade as she is the only ME dr in NZ and is used to “trying” things on people.

My Al, is as bad as ever and if he can help he would also ( although he is so ill he can not even go in a car at the moment). So its harder for him to go for tests and because he reacts to meds he is in a much more vulnerable position than me. I am still endevouring to get the photo of the back of his eye.

my best Jill

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Posted: 29 October 2012 08:25 PM   [ Ignore ]   [ # 6 ]  
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jillMEnz - 28 October 2012 11:57 PM

Hi Diana,

I’ve just watched the latest video and read the financials. Gee I wish I had some money…
I’m more than happy to be involved in any clinical trials - although I already take a bunch of meds.
Most medications are essentially free here in NZ and my GP is easy to persuade as she is the only ME dr in NZ and is used to “trying” things on people.

My Al, is as bad as ever and if he can help he would also ( although he is so ill he can not even go in a car at the moment). So its harder for him to go for tests and because he reacts to meds he is in a much more vulnerable position than me. I am still endevouring to get the photo of the back of his eye.

my best Jill

Hi Jill, Please tell Al not to give up!!! Honestly, one of the medications I KNEW I needed (but also knew my doctors would say, “HUH? NO WAY!”), so I flew across the country to see a semi-retired doctor whose previous research touched on this. He is helping me—and not a moment too soon. You and Al will relate to this. My husband had to almost CARRY me into his office. Yeeks. In just a few days, I felt better than I have in years. The layers of our onion need to be treated in a certain order, once the layers have started to peel (that’s a bad metaphor), but when done in the right order, WOW, our bodies respond. My son, who was DEATH WARMED OVER for 3 years, doesn’t think he is sick any more (and thus has to be threatened with violence in order to take his meds)! How quickly kids forget… When we are all feeling better, we will have a worldwide internet based party. Cool? Everyone’s invited. Big hug to you and Al smile Diana

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Posted: 14 November 2012 01:15 PM   [ Ignore ]   [ # 7 ]  
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I’m so glad I stumbled upon this page!! Here is my story(history)!  I am a 40 year old wife and mother of three daughters 16,14&9!! I have had medical issues my whole life though I managed to live normal, went to many doctors only to get wrong answers or no answers!! (was told they thought i had leukemia then a rare blood disease, which was later retracted??) I continued to feel worse n worse year after year! I stopped working in Feb of 2011… I was a faux painter…it became impossible for me to do that!! Finally after moving to Houston, I started searching for the best doctors that could give me answers!  Well it took until January of this year (2012) to get my answers…and it was way more than I wanted or was prepared for!! I went through a ton of testing, I mean a ton!! First was IBS (found out from a colonoscopy upper/lower), went through I think six/seven different meds until I discovered digestive enzymes, live probiotics, and 100% aloe water and marinol! (the rx meds had too many side effects) I’m typical 120lbs n I went down to 99lbs from nausea and vomiting(this is why my dr added the marinol, it worked, it’s helps me w/ anxiety also) 
Next my blood showed I had Autoimmune Disease (+ANA, +scl-70, very high, and a speckled titter) the dr first told me I had SYSTEMIC SCLEROSIS(SCLERODERMA),I had never heard of it? I did my research only to get devastated, I made a apt with the best sclero dr in Houston (only a nine month wait) but….I called everyday for cancellations and got in after a few months… Only to be told by that dr that he didn’t think that I had scleroderma that he thinks it was a false positive (I had 4 separate blood work ups all 4 were positive and numbers got higher after each test??) 
Next my diagnosis was changed to MIXED CONNECTIVE TISSUE DISEASE (overlap) dr says we think u have three autoimmune diseases…we just don’t know which yet?) this is the day I got my RAYNAUDS diagnosis too! (I had never heard of it either…had to do more research) only to get devastated again! At this point my rheumy gives me a referral to a neurologist (this is my breakthrough) I took a liking to this dr right away, I knew with every ounce of my being that she was the one who was going to give me my answers!! She ran every test possible, emg, mri’s, mra’s, tilt table,EKG…on n on….
After all of the test this is what she gave me…a new diagnosis list…here we go
1) IBS
2) RAYNAUDS
3) FIBROMYALGIA
4) SYNOVIAL CYST L4-5,S1
5) MIXED CONNECTIVE  
      TISSUE DISEASE (overlap)
6) MYOPATHY
7) PERIPHIAL NEUROPATHY
8) POLYNEUROPATHY
9) PITUITARY ADENOMA
10) CHIARI I MALFORMATION
11) EHLER DANLOS
12) CHRONIC PAIN
13) ORTHOSTATIC HYPOTENTION
14) SIGNIFICANT BRADYCARDIA
15) SINUS BRADYCARDIA
16) syncope (heart)
17) CARPEL TUNNEL
18) MIGRAINES
19) GERD
20) TINNITUS
21) PARATHESIA
22) LEUKOCYTOSIS 
23) COLITIS
24) GASTRITIS
25) ANNULAR BULGE L4-5; C3-4; C6-7
26) REVERSAL OF CERVICAL LORDOSIS @ C3
27)ABNORMALITY WITHIN SUBCORTICAL LEFT FRONTAL LOBE (brain)
28)ANNULAR FISSURE @ L4-5
29)LEFT VERTEBRAL ARTERY IS MINIMALLY DOMINANT (cervical)
Whew .....I think that’s everything that I have been diagnosed with to date, but it seems like everytime I visit one of my nine doctors that they add something else?? 
I was to say the least, shocked and probably still am to some degree!! This would be too much for the strongest of strong ( which I am)!! 
I had to make a decision to try to fix the things I could one at a time, then deal with the rest (as most of my diseases/conditions have no cure), I also decided to start sharing my story instead of hiding it, in hopes to help this not happen to others!! You see, I believe if I had a earlier diagnosis(s) maybe it wouldn’t be in my skin, tissue, nerves , muscles, bones.
I made the decision to start with my stomach issues first as they were debilitating!! I tried every stomach med and anti-depressant on the market from my GI dr… No luck!! I then researched a lot… I got allergy test done…came up allergic to WHEAT & THIMEROSAL (preservative in vaccines n flu shots)... No wonder those flu shots made me deathly ILL? (won’t get those again)
Next I cut wheat out..went on a gluten free, 100% organic diet, started live probiotics, digestive enzymes, 100% aloe water (George’s is the best) , b-12 sublingual, vita-d, and a powder called….ASIHW ESSENTIAL PROTEINS(this is the highest quality nutritional supplement to provide essential amino acids, natural GLUTATHIONE PRECURSORS and important IMMUNE FACTORS) 
This is all over the counter!! The only Rx med I take for my stomach is MARINOL(this is the only med that controls my nausea and vomiting)
This has been working for me for months… I have had little to no stomach issues!!
Next I decided to have BRAIN SURGERY to fix hopefully many issues that have arisen due to my CHIARI  I  MALFORMATION…this was on JUNE 13, 2012!!
!

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Posted: 14 November 2012 01:31 PM   [ Ignore ]   [ # 8 ]  
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It was very hard!! I have suffered since….and will be having another BRAIN SURGERY on DECEMBER 4, 2012!! I hope to have a quick recovery and feel better than I do now, so I can start working on my next medical issue!! Which is…are y’all ready for this one?When all of my MRI’S  were ordered, they were ordered w/ contrast! Well…after them, I got very sick, had blood n urine test done!! They came back saying that I have GADOLINIUM RETENTION( gadolinium poisoning) I am retaining massive off the chart amounts of this contrast agent? Why me? My dr tells me that after my next brain surgery I will have to start CHELATION IV THERAPY to try to get (most) of the GADOLINIUM out of my body, if I don’t do this she said it will harden my tissue and eventually my kidneys and that it would/could kill me? Really? Like I wasn’t already dealing w/ enough!! I’m trying to get well by doing all of these crazy test… Only to get sicker?? So not fair!!   My doctors keep wanting to give me anti depressants…I told them that I wasn’t depressed I was pissed!! Do you think I would be a good canidate for any of your trails?? If so please let me know!!  Thx! smile

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Posted: 15 February 2013 03:57 PM   [ Ignore ]   [ # 9 ]  
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Hi Tara,
Just wondered how the Brain Surgery went and, whether you ever got the IV Chelation for the Gadolium toxicity ?  Let us know how you got on with both.
Regards
Barbara
(UK)

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Posted: 30 May 2013 05:13 AM   [ Ignore ]   [ # 10 ]  
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I’m here, and available for clinical trials… I’m right in your area, so I don’t have traveling difficulties to contend with. God bless and prayers for those who do. These ppl amaze me. Please put me on the list of interested parties as well. Thanks.

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EDS (type TBD), Hyper-mobility 9/9, Occipital Neuralgia, Cervical Disks Bulging C5-C6, FM/CFIDS, IBS, GERD, Adrenal Fatigue, Swollen Lymph Nodes, Faints and Falls, Insomnia (1st sleep study revealed lack of Level 4 deep wave sleep, and 2nd sleep study revealed highly elevated BP during sleep), Tachycardia, Blurred and Double Vision, Tinnitus, Food intolerance, Metatarsalgia, Dyshidrosis of the hands and feet, Endometriosis (prior to hysterectomy.

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Posted: 16 June 2013 03:48 PM   [ Ignore ]   [ # 11 ]  
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Hi Everyone! Just so you know, I’ve completed all of the trials at this point. Yea! Thank you to everyone who was able to participate, and for those who couldn’t, no worries… You will benefit from our collective knowledge! winkI’m trying to decide whether it is worth it to bring this to an institution (lots more credibility AND expense) or just release it (less credibility, but more help for us sooner rather than later). It’s a tough decision and I’ll leave this thread open for a while, in case you have an opinion you’d like to share. Thanks so much!

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Posted: 16 June 2013 05:37 PM   [ Ignore ]   [ # 12 ]  
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Hi Dr Diana,
Can you not do both ?
Barbara
(UK)

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Posted: 16 June 2013 08:28 PM   [ Ignore ]   [ # 13 ]  
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Barbara - 16 June 2013 05:37 PM

Hi Dr Diana,
Can you not do both ?
Barbara
(UK)

Great question, Barbara! It’s a rough world out there! Institutions won’t want to even listen to you, unless the patent is air-tight (NO ONE KNOWS what is in it). The red-tape is unbelievable! This is really a tough decision. I’d hate to get out info and have it fall in the cracks of “quack - science”, but I also hate the idea of the length of time (and expense!) it takes to deal with the institutions (think incredible legal fees). I’m exploring all options simultaneously now. Some people loved that I got out parts of The Driscoll Theory early (especially our propensity for hydrocephalus and mast cell disorders). But some people seem to really dislike the fact it went out before double-blind studies, or that I figured this out without involving ‘a specialist’! I’m trying hard to speed up science, as every day is critical and can be so miserable for so many. I need to accept that I can’t please everyone, and go where my heart leads me…

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Posted: 28 June 2013 03:35 PM   [ Ignore ]   [ # 14 ]  
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Totally understand the dilemma. As a patient I want the info sooner than later of course. And yet, as I witnessed with the CCSVI debacle, we don’t want this to slip through the cracks or not be taken seriously. With the CCSVI thing, even with the studies/IRB’s that were started, the mainstream doctors and scientist were so against the procedure that all the IRB’s were shut down. Studies trying to prove CCSVI doesn’t work seem to match those that say it does. And yet, some people have been helped, some more than others, etc.

I think with CCSVI we see something that was well intended: to get the info/procedure to those suffering as soon as possible. Along the way, the science was loose, the publicity (namely it was only for MS and that it “cured” MS) was overly zealous/fraudulent.

With CCSVI I did have some good results, but I also soon after it started taking Diamox and so I don’t know if the CCSVI benefits had worn off and the Diamox benefits took over. Know what I mean?  After being on Diamox for over 2 years I stopped it because I had gone down to such a low dose (trying to get away from the low Co2 and low potassium problems I was constantly chasing) that it wasn’t doing any good anyway. After a couple of months I started noticing some of the neurological symptoms I had before my CCSVI procedure and before starting Diamox… mostly that insects under the skin, crawling on the skin, feelings of water dripping down my leg or arm, but nothing there, etc. That got me thinking a lot about how much good the Diamox had been doing. So, I started back up on it less than 2 weeks ago. So, we will see what happens. I am not going for the lowest possible dose, but a dose that helps my symptoms. I will be seeing a nephrologist in July, so hoping the bicarb/potassium issue will get some help if I stay on it.

All that to say, get the proper backing, trials, etc. Hard in the short term, best for the long haul. I could be wrong, but that is my gut feeling. Would be cool if and when it gets to the stage of more formal trials of your treatment that it be open to those of us on here so we might have a chance (in a blind/double blind some would get the treatment, some would not, etc) to be getting the treatment sooner.

Hope this all makes sense. Thanks for all you are doing behind the scenes, Diana!

~jerri

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Posted: 28 June 2013 03:57 PM   [ Ignore ]   [ # 15 ]  
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Thanks so much for your perspective, jerri (and encouragement!). We’ll all be eager to see how Diamox affects you again. I’m so glad you’re getting help from a urologist. Ours was so valuable in keeping our blood work straight, and they are quite used to managing folks who need Diamox on a continual basis. It’ll be fascinating to see if Diamox gives you th same effect that you felt post-angioplasty. Are you on blood thinners, BTW? I developed an thrombosis at the site of the angio on my right IJV. My son and I are now on blood thinners, and always will be. I understand what you mean about the “drama” of CCSVI. Wow. Because most of the patients restenose and all of the ones (we’ll see about you!) who I know with EDS who were treated didn’t get much relief, if any, I *really* think systemic treatment is the way to go! (working on it!). Meanwhile, I made a huge jump forward on our first medication! I just had to knock on a lot of doors! We’ll do a study, but it won’t take long AT ALL. The patent is locked down now, and I have a great group to work with. I promise to keep you posted! wink

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