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leannemaready
Member
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Posted: Tue May 20th, 2008 17:27 |
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Hi Julia,
I've emailed Meg. Those email links won't work on my computer, but I sent an email to that address in hotmail. Is there an actual application to fill out that is attached to that link? I want so badly to start the MP. I thought I was a member since I registered, and was hoping to start the Benicar this week. 
Thank you for the heads up.
LeAnne
-Can I still do the MP without the moderators? Can my doctor be my advocate? Scary, but I will rather do the MP will just a little help, than not at all.
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Fri May 23rd, 2008 22:59 |
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LeAnne,
Sorry for the delay in replying. I think the application form comes in response to your email. This is all very new to us as well!
There's no law against doing the MP without the moderators, but we can't recommend it unless your doctor is prepared to join the professionals' forum and educate himself/herself about the MP. Many members have tried to go without posting for some time, and all too often have come back in crisis, or to say that they've just been to hospital because of intolerable immunopathology. Very often the moderators could have spotted trouble coming if they'd been given more details sooner, and given advice on how to avoid it.
Julia 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Tue May 27th, 2008 01:11 |
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Hi Julia,
My doctor called with my D levels on Friday, but says he needs more time to read through the info. I hope he will call this week. (25,D=24 1,25,D= 62). I am most likely going to start the MP whether or not I am accepted into the cohort. Can I still talk to you and Janet and other Advocates on this site? I have been emailing alot with KenC with Crohn's and he is a GREAT help. I haven't sent Meg my application yet because I don't think my doctor has joined and I need to look into getting an oxygen tank, I guess, even though I've never seen below a 99% on a pulse oximeter. But I have had some history of shortness of breath. We live five minutes from a good hospital/ER, however, I may be moving in with parents and/or in-laws (2 hours from our house) so they can help with my little boy. In that case, I am probably 15 minutes from the ER. My husband will be comuting back and forth. Half the week at home, half the week with us. I feel very supported, and that we are all in this together, but I also feel like I am about to step off a cliff. I am making notebooks, printing intructions, etc., trying to prepare as much as I can. With my notebook, doctor, and family, I think I will be able to get through it. Sorry to be so long-winded, I just wanted to know if I can still get suggestions here.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Tue May 27th, 2008 01:31 |
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LeAnne,
This site is always available to ask general questions and ask for pointers on where to find study site library details. The more you learn, the better, no matter what  .
Moving forward, it is important to note a big difference in this site's function from the study site. Advocates on this site simply describe MP information sources and strategies for working with the best health care team you can pull together.
Also, we'll always say that Nurse Moderators on the study site are equipped to dialog about individual progress reports and medications. No progress reports or medications are listed here. You might want to read this, too:
How to post your D-metabolites tests results
Sounds like you are making major life changes and plans. I wouldn't be in a big hurry to try the MP without the study site, but others might see it differently. There is no rule that says you can't submit an application.
Best to you LeAnne--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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leannemaready
Member
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Posted: Tue May 27th, 2008 01:41 |
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Janet,
I would MUCH rather do the MP with the help of the nurses. What do you think the chances are that they will continue to accept more members into the cohort anytime in the near future?
Thank you for such a quick response. 
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
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Posted: Tue May 27th, 2008 02:53 |
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LeAnne,
My understanding is that the old process has been updated with a process that works better for all who --must-- plan well for the years that are required for the MP.
All stakeholders have an interest in seeing any new members are prepared for the journey. Those interested in participating on the study site, their doctor, volunteer nurse moderators and research teams, even those who will not be accepted, and the multitudes of others who will benefit from the research later, are all impacted by the choice for one who is accepted into the study. It is an important position of trust.
So whenever anyone applies, they should consider it is not just their own welfare that an opportunity is given, or even for their family. That is why CureMy helps everyone who posts here to learn more about the process and the content of the Marshall Pathogenesis and Marshall Protocol. That is why the right stuff is discussed.
If you think you have the right stuff to learn, do your best when you have been given information, and stick with it to get well even when the going gets tough, then an application is certainly appropriate. Julia gave you the information above.
Three info sets you and your family will want to consider:
Phase One Guideline pdf file
Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol
Safety warning Best to you LeAnne--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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leannemaready
Member
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Posted: Tue May 27th, 2008 02:54 |
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P.S.- The big life changes I am making are to enable me to do the MP. I am very gracious that my family and my in-laws are so willing to help and make a joint effort to get me well.
But at the same time, I don't want to put them in an uncomfortable position where they feel they are in an out-of-control situation. That is why I am trying to guage what kind of online assistance will be available. They are all very proficient with the internet,... especially my husband. He will probably set me up to have a daily video blog. I understand it will get ugly at times and that is all part of the process.
Maybe I should just wait until I have the "blessing" of the moderators. I don't want to make a bad situation worse, (at least prematurely).
I plan on submitting my application this week once my doctor has (hopefully) joined the physician's forum.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Karon
Member
| Joined: | Sat May 3rd, 2008 |
| Location: | USA |
| Posts: | 22 |
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Posted: Tue May 27th, 2008 03:19 |
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Hi Leann,
My name is Karon and I Joined the MP in 11/07. I have been studying and printing Info and letters from the MP for 6 months, I had to "pretend" to try steroids first and many, many tests. I knew the MP was the TRUTH the day I found it. My TH1 symptoms are differant than yours and I think a shorter onset. I have RA type symptoms. Brain fog, Depression,and fatiuge, A positive TH1, a positive RNA and a positive PARVO. No D tests yet.
Luckily my persistance and pretending to take steroids etc...finally paid off. First my Dr. wanted me to take 100 mg mino 2 x a day. I did! Then add 5 mg Beni once a day. I persisted about the Beni and she upped my dose to 20 mg 2 times per day. I ramped myself to 40 every 6 hours and left the Mino alone. ( I did however fill the perscriptions to use later). I called and called the office to avoid the sun and now I am finally starting the Mino 25 mg Q48h tonight.
I must tell you that one of the most helpful things so far was to read and read the MP members posts. I started to identify when the MP'er was messing up. I read and read the moderators responces and I could not help but memorize the "What to do if the IP is to strong" . I feel prepared! I know "NO PAIN NO GAIN" and can accept this as I did when pregnaut. At the end of this pain there is my health and feeling GREAT again. That will be my baby this time !' '
Anyway this is my first actual post. I too was so so dissapointed ,afraid, confused,and felt so very cheated when denied access to the study site. After all ....I have been a member[  since 11/07. When Meg sent me an application for future consideration I was SMAD (Sad and mad all mixed up) I couldn't bare the thought of filling it out. I was ready, and it took a long time to prepare only to be DENIED one day after the study closed!
I do however understand the need to not take more on than the moderators can handle. After all they are just human, though we see them as angels. Maybe this MP family will be able to help us stay connected and supported throughout our journey to wellness.
Your MP sister,
Karon in California
[moderator note- text cleaned up/white space added for those with reading difficulties]
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PTSD RA CFS Chron Inflam Disease| Naproxen Tramadol| 125D73 25D20(May08)| 25D14.4(Jul08)| PH1-Apr08| Lowlux Home Work NoIRS NoSun covered up| Ph2-Aug08
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leannemaready
Member
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Posted: Tue May 27th, 2008 03:34 |
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Janet,
I want nothing more than for multitudes upon multitudes of people to benefit from Dr. Marshall's reseasrch, and from what can be learned from each member in the study. I would consider it an honor, to be able to be one more person to show that the science works. I have "danced on hot coals" for much of my life, with no answers. Now I have THE answer and am ready to walk through the fire. That is why I am making such drastic changes and moving. I am creating a conducive situation for everyone, so I can be in this for the long haul. My husband is willing to leave his current job, and is looking for a job in which he can work remotely from his parents' (large) house, or for a job in town. He believes that strongly in the MP, too.
Thank you for your help and guidance. I will continue to read and study. I know I have what it takes, but I want to make sure my doctor does too. Then I will apply.
Thank you Janet,
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Tue May 27th, 2008 03:45 |
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Thanks Karon for the support. I wish you the very best of luck, and hope you get to be part of the study. I am frustrated, too, but also believe there is a reason for it all. All you can do is all you can do. I hope to be part of the team one day, to relieve the moderators. I know they work like dogs, and they shouldn't be reprimanded for desiring to take good care of the MP family they are overseeing. I respect them. If I were in the study already, I wouldn't want them to be spread too thin. I would want to know I had the attention I needed during times when I really needed the help. I wish for the current cohort to go on trailblazing for us all. And I wish for us to become trailblazers too!
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Mon Jun 16th, 2008 22:24 |
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Hi there,
Can anyone point me in the direction of the modified phase for patients with cardiac symptoms? I am still searching for a doctor. I met with one last Friday, and he is quite an expert on Benicar, but that at this point seems to be a hindrance, since he disagrees with the high dosage. He is supposed to be calling Dr. Marshall this week to talk, and then I am to meet back with him again on Friday. He seems very intelligent though, and was unintimidated by the MP, and seemed to be open minded. I would feel very comfortable with him as my MP doctor, if he approves.
Anyway, while waiting, I have had an increase of heart palpitations and chest burning. I just emailed someone on the MP who had a heart attack, and would like to start the MP with extra caution.
Thank you,
LeAnne
____________________
Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Tue Jun 17th, 2008 00:48 |
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LeAnne,
The topic When should I be concerned about cardiac symptoms? says in part,
The MP was developed with the knowledge that anyone could have cardiac involvement, even if asymptomatic. This is why we are adamant about following the MP guidelines exactly so the immunopathology can be controlled. Read all precautions and instructions in the Phase One Guideline. Print it out so that you can check it regularly.
Before you begin the Marshall Protocol, ask your doctor if you should have any special tests to assess your cardiac status. A cardiac workup will provide valuable information to your doctor about the presence or absence of cardiovascular disease. This knowledge will help assess any cardiac symptoms that may develop while on the Marshall Protocol.
A doctor who doesn't believe in high dose benicar isn't going to be much use, unless he's open-minded enough to read these links:
FDA safety insert
Benicar-Basic Information
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
At least if he's willing to call Dr M that's a good sign and we'll hope for the best
Julia
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Wed Jul 30th, 2008 19:20 |
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Haven't posted in a while. I've been busy PMing and doctor hunting. Will elaborate later, but license issues seem to be a common thread. I am growing very frustrated. I am dreading flying to a doctor, but looks like it is coming to that. I have a couple phone conferences set up and two more appointments next week.
LeAnne
Last edited on Wed Jul 30th, 2008 19:20 by leannemaready
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Thu Aug 28th, 2008 02:11 |
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Hi,
I am still plugging along, and finally believe to be on my way. I will have to fly half way accross the country, but my Benicar Rx is waiting for me in the pharmacy and I'm faxing another one tomorrow. However, I am currently concerned about my very sore lymph nodes, mainly in my neck and behind my knees. This all started in June after taking Levoquin, but is much more uncomfortable the past few days, maybe too much sun. I feel I may have developed sarc but have not been diagnosed. But as I a hypervigilant about ruling things, I wonder about Lymphoma. My 1,25 D is 71 and I just read this from Trevor on Sarcinfo:
"
A sarc patient will nearly always be give a false cancer diagnosis unless a sizeable sample of biopsy tissue is taken. For example, a "needle biopsy" will destroy the structure of the sarc granuloma, making it very hard to recognize under a microscope. Many pathologists will mistakenly classify a needle biopsy of sarcoid tissue as cancer when it is not."
" The other piece of good news is that Vitamin D (1,25-D) protects your body against cancer by activating your immune system. Of course, this is the last thing you want as a Sarc patient, but cancer patients are now being given D supplementation. You all already have much higher levels of 1,25-D in your bodies than any other sector of the population. It is activating your immune system, just as Docs are trying to do with the new cancer D-therapies. Think of it as a built-in immunity... It doesn't mean you can't get a malignant disease, it just makes it less likely - there has to be some benefit for all this suffering from Sarc  "
So should I spare myself the agony of a possible false cancer diagnosis, and start the MP and never look back? Crohn's and Lyme are positive and Th1.
Thanks,
LeAnne
____________________
Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
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Posted: Thu Aug 28th, 2008 05:54 |
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LeAnne,
Some decisions will always be yours and your doctors to discuss.
I would caution that all of the diseases that respond to the MP have many similarities. Trying to pick out just why your lymph nodes are swelling may be less productive than finding a way to stop the damage from continuing. Please keep reading.
The reason doctors are giving cancer patients D supplementation are varied and likely based on poor info sources of D proponents. I suspect any info that suggests D (NOT a vitamin) supplementation activates the immune system.
New paper: Vit D discovery outpaces FDA decision making.
FullText Preprint available here.
Correspondence fulltext preprint is here.
I found an interesting article/study. Can you tell me what it means?
Best to you as you learn more -- Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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leannemaready
Member
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Posted: Wed Sep 10th, 2008 03:54 |
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Hi there,
OK, I think I may actually be starting in about a week. Hallelujah!!! I'm waiting on my Benicar to arrive. I've sent my application to the moderators, and am on the waiting list. As I proceed with my doctor (who is a member), do I understand correctly that I can make weekly posts/ progress reports here on this site? My labs have already been read by a moderator. I will post that here as well.
Thank you,
LeAnne in NC
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Wed Sep 10th, 2008 12:39 |
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| Congratulations on persevering and getting to this point, LeAnne! You're welcome to ask non-medical questions here and keep in touch, and we'll be glad to hear of your progress. There is no obligation for non-members to post a formal weekly report. Medical questions must be directed to your doctor, who can access support through the professionals' forum. Bon voyage!
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Tue Sep 30th, 2008 14:03 |
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Hi there,
I will be starting Benicar Oct. 21. I have it all and ready to go, just have to get through a couple of obligations before starting. My question is....I am to start Benicar, and then go to my doctor three weeks after I am on it, and before I start Mino. I have to fly to my MP doctor and am very nervous about this, with the concern of light sensitivity, and possible cardiac herx. My husband will be with me, I won't be alone, but I am concerned about the rise of 1,25 D from the sun in the airport/plane. I have been having a few heart palps and skipped beats here and there, and have been to the cardiologist. All arteries are clear and stress test was normal. I would rather fly to my doctor before starting, while I am not photosensitive. My 1,25 D was 71, so I know I have serious organ involvement. Should I try to go to the doc before starting, or take his word for it, and try to fly after starting the Benicar? He is very knowledgable and has almost 100 patients on the protocol. I trust he understands the protocol extensively, I just wonder about the flying/ sun part in an effort to get to him for an actual doctor visit.
Thanks for any advice and for your time,
LeAnne
____________________
Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 134 |
| Status: |
Offline
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Posted: Mon Oct 6th, 2008 04:34 |
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Leanne
This needs to be discussed with your Dr. It is important to discuss any concerns you have with your Dr and if you cannot resolve it there, we may be able to assist.
Thanks, Barb ...
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