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LD
Member
| Joined: | Mon Dec 3rd, 2007 |
| Location: | Georgia USA |
| Posts: | 9 |
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Posted: Sat Jul 5th, 2008 22:24 |
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I completed app for MP Clinical Study and emailed it. Received a reply saying app would be filed. I am sooo.... disappointed. I would like to know how long one might have to wait. I have been preparing to start the protocal for almost a year. It has taken that long to get it all started because of circimstances beyond my control. Just recently I was diagnosed with cyst in my right kidney. This has been very painful. I also, had an ocular bleed in my right eye about 2 months ago. My vison in that eye has dimmed a lot since then. Opthamologist said the other eye has bled too. I am having flashes of light a lot in same eye. I had a goal (because of circumstances) of starting on October 1, 2008. Can a person start the protocol without the support team on the website. I guess the clinical answer to that is that it is up to my doctor. He does not monitor except every three months during required visit. I have not posted in a long time but, I have been making a notebook of copies of all the important information on the website. I have been reading and educating myself this entire time. Any help would be appreciated.
LD preMP. CFS,FMS. RX=Armour Thyroid 60mg, Ambien 5mg.
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LD PreMP
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Dr Trevor Marshall
Research Team
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Posted: Sat Jul 5th, 2008 22:59 |
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Normally it takes 20 years or more for a discovery to filter through to actually help the long-suffering patients. My WA colleague, Barry Marshall, had to wait even longer than that for Helicobacter to be fully appreciated. In fact, many doctors still prescribe antacids for GI pain...
We have been trying to figure out ways to make our intervention available more quickly than 20 years  But we have to work within a framework of laws and rules which have been put in place by a machinery aimed at entrenching a monopoly for the Medical Profession, and the patients are usually the ones left to suffer by the system under which we all have to live and work.
Additionally, instead of getting tens of applications a month we are now getting many more, and next year can expect to be (maybe) in the thousands. We cannot structure a Clinical Trial in an environment like that, so we need to find another legal format where we can help you all. That is what we are trying to set up right now. Please have patience, there is no point in us trying to lurch forward and then hitting this, or that, brick wall.
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LD
Member
| Joined: | Mon Dec 3rd, 2007 |
| Location: | Georgia USA |
| Posts: | 9 |
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Posted: Sat Jul 19th, 2008 21:51 |
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Thank you for your reply. I understand the sacrifice that all of you are making to spend so much of your time helping others. So, I will continue to wait.
I asked about the area of time to wait because of my situation with the MP doctor that I visited. I have only been to him twice. I can go back to see him again, but I dont know what I should tell him since I will not be starting yet. If I wait too long to go back to him, he may change his mind. He did not want me to try the MP because he said my Vit D tests were in the normal range. I find this really hard to believe since I have been totally disabled with CFS and FMS for about 10 years now. I would like to have the Vit D tests run again. The first ones were sent to the Emory University lab in Atlanta and not to Quest. How can I get him to change labs without insulting him? Also, it takes about a month to get an appointment, so, what are others doing that are on the wait list?
Some of my posts may be a little brain foggy, but I would like to start getting to know some of you.
I sent an avatar to the MP site today. That is, I think I sent it. I pasted the picture and pushed send at the address given on MP site.
 LD
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LD PreMP
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Rico
Advocate
| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 110 |
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Posted: Sun Jul 20th, 2008 15:53 |
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LD, that what some consider "normal range" and what Dr Marshall considers "normal range" re the D-metabolites are not necessarily the same. Consider this:
How to post your D-metabolite Test results
Also consider this:
If the patients inflammation is in tissues that are poorly perfused by blood (nerves, joints, skin), the serum sample will not be an accurate reflection of what is going at the paracrine level. D-metabolites tests
Therapeutic Probe
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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LD
Member
| Joined: | Mon Dec 3rd, 2007 |
| Location: | Georgia USA |
| Posts: | 9 |
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Posted: Sun Jul 20th, 2008 19:31 |
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Thank you Rico for replying to my post. I read the references that you suggested. I am glad that I read them because it prompted me to go back and look at the sister MP site where I posted Vit D test results in Dec., 07. Meg told me back then the same thing that you said about "normal ranges". I also saw where she told me too that inflammation can be in the tissues and test results will not show it. Sorry that I was needlessly repetitive. It was just so long ago.
I am going to make an appointment with the doctor that I saw before and just trust that he will work with me.
LD
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LD PreMP
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LD
Member
| Joined: | Mon Dec 3rd, 2007 |
| Location: | Georgia USA |
| Posts: | 9 |
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Posted: Fri Oct 3rd, 2008 16:26 |
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Hello,
I have not posted for a long while although I read and follow most everyone's progress. I have been a member of the MP website since the fall of 2007. It took me several months to get first myself convinced then my doctor, my job and my insurance plus my finances lined up so that I could begin. The study site closed and those who chose could go on the waiting list. I did that and was looking forward to my name coming up on the list. I have waited patiently just as Dr. Marshall suggested in an earlier post. Months ago, I received a confirmation that I was on the list but today I received an email stating that the site is closed for any new corhort applicants and that it is being remodeled. All along new people have joined the cohort study and I have watched as they started Phase 1. Guess my name was just too jar down the list.
I have an appointment with my MP doctor on October 13th. I had planned to begin the MP independently on October 1. I broke a bone in my foot and have not been able to make the 3 hour drive to see my MP doc. I want to ask him to allow me to work the program independently. I am a long distance from his office, I am not a young person and I do not have a support system at home. It will be God, me and the 3 hour away doc.
I have been doing the steps to begin for almost a year. I stopped all Vit D foods and eliminated light, wore my sunglasses and that started the IP without even taking any meds. That was last Spring. So, I uncovered my windows and I only wear the sunglasses when I am outside. I know this is for me to have started IP just by eliminating light and foods with D.
I have added back an occasional food with D like milk and once a month or so an egg. At that time I also stopped HRT, DHEA, all supplements including calcium that I think I need. I had Hyperparathyroid for years and finally had one parathyroid removed to slow the calcium. Thyroid was removed at an earlier date and the parathyroid was in some scar tissue. Wish that I had known about MP then. Without the calcium supplement my bones ache in the night when the calcium uptake is going on.
I think that I am very familiar with the protocol but as I have watched others, we learn as we bump into things that cause us problems. I am sort of scared to start this all on my own. So, any of you who are doing this alone without the cohort support or family support please post and help me out. I have to go out of town for business reasons next week but with my MP docs permission (and I am praying for that) I will begin in mid October.
Any info to get me going will be appreciated.
Ever so patiently waiting,
LD
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LD PreMP
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Julia
Advocate (on leave)
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Posted: Fri Oct 3rd, 2008 23:19 |
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LD,
I'm sorry for your disappointment at not getting into the study, but the demand has been overwhelming, and the volunteer nurses are a small team.
We're not medics on this site, but at least we can cheer you on, and help you find the information you need in the MP 'library'. When you start the MP, your thread will be moved to our new forum for those on the MP independently.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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