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cathys2007
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Posted: Sat Jun 21st, 2008 21:34 |
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It seems I've always had bad luck when it comes to timing. I joined as a member of MP Nov. last year. My treating doctor was taking maternity leave so I had to wait to approch her with the MP details. Finally after explaining MP to her and her gathering info, she opted not to prescribe the meds. I was shocked, but understood her reasons. I sought another doctor that has already was part of the MP study. Unfortunately, I had to wait 3 months for an appointment. To make a long story short I got the prescriptions and collected a 2 month supply of medication. I planned a 2 week leave from work so that I can begin to rid my body of bacteria without having to worry about work while my body adjusts to the hormonal changes. I have all my check lists , med containers, alarms, blood pressure monator etc. ready to begin. I've fully weaned off prednisone and stopped taking methotrexate to prepare. Wasn't as easy I had thought. I have made these plans to start MP and I plan to start on Jul 5th. I know that MP will cure me and I am eager to begin healing. I've logged many hours studying and printing info from the site. I have believed for years that my health issues were all related and stemmed from one common factor...bacteria. Many doctors thought I was nuts but reading and studying this site only confirmed what I thought all along. It makes so much sense.
I was aware that MP membership had closed ( I was already a member)so that didn't affect me. But, I wasn't aware that I still had to apply to become part of the study cohort otherwise I would have sent an application earlier. I sent my application about a week ago and haven't heard anything yet. I'm hoping to become part of the study. I want to be part of history in the making.
My question ...
If I'm not accepted by Jul 5th, can I still take MP meds and follow the guidelines of MP and later still be accepted in the study? Basically, what I'm asking is...will starting the protocol affect my chances of not getting accepted in the study?
Thanks
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Sun Jun 22nd, 2008 04:16 |
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Cathy,
If I'm not accepted by Jul 5th, can I still take MP meds and follow the guidelines of MP and later still be accepted in the study? Basically, what I'm asking is...will starting the protocol affect my chances of not getting accepted in the study?
I hope that you aren't thinking to not do the MP unless you get into the study, which is the only reason I can think of for your question. Waiting for an indeterminate time to start getting your health back doesn't seem like a good thing at all.
If making history is your thing, a harder step, and a more needed one, is convincing your doctor to be fully part of the MP process, logging into the MP site and fully understanding the protocol, so that others have an easier time of it after you.
I can't answer your direct question about getting into the study after doing the MP for a while; that will have to wait for study moderators to comment on.
I'd be real wary of any reason for a delay in starting the MP if you have already decided to do so.
-- Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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cathys2007
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Posted: Sun Jun 22nd, 2008 12:07 |
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Chris responded "I hope that you aren't thinking to not do the MP unless you get into the study, which is the only reason I can think of for your question. Waiting for an indeterminate time to start getting your health back doesn't seem like a good thing at all."
That couldn't be father from the truth. I plan to start MP on JUl 5th, Whether or not I'm accepted in the study. I want to become healthy and I'm convince this is the only way. If I had found a willing doctor last year I would have started earlier. Trying to articulate my thoughts has proven difficult especially in writing. I didn't mean to give the wrong impression. I would rather be in the study so that I can ask questions as they come up. I trust the moderators opinions, probably more so than my doctors. see 1 reason below. As with anyone with TH1 disease, my thought process is lacking at times. I guess what promted my question was because I haven't heard anything about being accepted or not. I missed an important ingredient to becoming part of the study...not knowing that I had to apply since I was already a member. I'm hoping I haven't missed any other critical info about becoming part of the study.
I approached 4 of my doctors about MP, only 1 would actually tried to understand the science. She is an epidemiologist/ rheumatologist and she called DR. Marshall, studied the science and understood the process. She even brought the subject up at a conference she went to. She met with a big wig doctor from NIH who explained that MP is based on Brown's work and that it showed promise. She even stated to me that this could be the future treatment for TH1 deisease. But even still I was shocked and disappointed that she still wouldn't prescribe meds. I will prove to her MP works! So my healing was put on hold again until I found a doctor willing to do it.
I've seem many doctors, most of whom thought I was depressed or a hypocondriac. Over the years I've developed a mistrust towards doctors, because they only want to treat symptoms and not find the underlying cause. I've been sick a long time and don't want to wait any longer to heal. After months of looking, I finally found a doctor who is willing to do MP because she has done it for other patients. She seemd to know how MP works and is a memeber. Since I don't know her well enough yet, I prefer to be part of the study for questions. I've done all the prep work to start so I will start no matter what. I am in it for the duration of healing. I've already have had improvements using NOIRs.
I purchased the NOIRs in Jan and have been wearing them outside and inside at work. ( yes I'm avoiding sunlight and vit d also) I've noticed a big improvement with the neuological symptoms like dizziness. This is something my doctors should have suggested (doctors prior to the MP doctor). This is one reason I trust this site for advice.
I hope I explained.
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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Julia
Advocate (on leave)
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Posted: Sun Jun 22nd, 2008 23:05 |
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Cathy,
Your disappointment is shared by many who thought they were members because they had joined the MP site before the trial closed, only to find that they had to have already started on Benicar, with a progress report up and running, to be considered a full member. Others, like you, have been actively trying to get started on the MP, and have been working hard at educating themselves and their doctors.
Nobody likes this situation, least of all the medical moderators. But the fact is they were getting so overworked that a halt had to be called to new membership, and a cutoff point decided. They are all volunteers, with families to spend time with and busy lives to lead, and responding to everyone's posts takes a great deal of time - I had no idea how much until I started helping out as a non-medical advocate.
Those of you who are not in the official MP trial can only safely do the MP if you can persuade your doctor to join the professionals' forum - not only for advice and support, but because it's the only way to access the Phase 2/3 instructions. Whether more members will be accepted into the study at a later date is something we simply can't answer at the moment.
The one consolation you have is the vast amount of information you have available to you in the MP 'library'. If you have a question, it's almost guaranteed to have been asked, and answered, before. Make good use of the search facilities, and when you get stuck, ask here for our help 
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cathys2007
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Posted: Mon Jun 23rd, 2008 00:06 |
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Julia
Thanks for your comforting reply. I've been reading many of the medical moderators responses in past the few months. To tell you the truth I was surprised they were doing as well as they were. I haven't asked many questions because most of my answers were found on the site. The site has been a great help.
My anxiety level is increasing the closer I get to my start date. The anxiety is from taking benicar because I have low blood pressure. I'm worried about dizziness and fainting. I'm also worried about neurological symptoms. I've read many things on these subjects on the site. One inspirational post stands out for me. The postings were from a member beginning MP shandym. She was nervous like me. Reading her posts really made me feel confident that I can do it. Now it seems my anxiety has increased because I don't know if I will have the medical moderators to ask advice if needed. I know I can ask my doctor, but the moderators know more and they have been through it.
If not accepted by my start date, is there anywhere I can post medical questions that are not answered in the site info? Can I ask medical questions in this forum or Mp-lifestyles ( I have access to post) that can be answered as non-medical advice but as a members expierience? For example, If I asked for suggestions related to leg cramps, can a member or advocate say they tried eating bananas to increase potassium that seemed to help their own cramps?
How do I make sure my application was received? Are applicants being notified that they are on a waiting list? Just wondering since I haven't recieved any response yet.
Thanks
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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Julia
Advocate (on leave)
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Posted: Mon Jun 23rd, 2008 00:47 |
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Cathy,
Strictly speaking, we cannot offer medical advice. But the kind of thing you've mentioned, how to cope with symptoms, not involving medications, well, give us a try and if we're not comfortable with it we'll tell you 
The site MP-lifestyles.org is more like a support group where you can discuss with other members things that don't need moderator input so much. But definitely not medical questions.
Don't forget your doctor can ask anything in the professionals' forum.
Julia
PS My leg cramps went away when I started avoiding light and vit D They came back sometimes during the MP if I got too much light  Now they've gone  (During all this time I never changed my habit of eating a banana for breakfast almost every day )
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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christine neisel
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Posted: Mon Jun 23rd, 2008 01:19 |
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Hi Cathy,
Your story sounds a lot like my position with the MP. I also thought since I had been a member that I could start the MP when everything was ready. I am like you in that I plan to get started as soon as I can. It is not the way I would prefer to go, but I am ready to get this health issue behind me. I just turned in my application about a week ago.
Where do you live? Do you have sarcoid in other places besides the lymph nodes?
Chris Neisel
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cathys2007
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Posted: Mon Jun 23rd, 2008 02:10 |
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Hi Julia and Chris,
Thanks Julia for explaining. I also eat a banana for breakfast but not every day. I'm not found of them. I'm reading so many simularities to my own life from other members. The MP sites makes you feel less alone. It also gives me strenght. I glad I can benefit from everyones experience. Do you have the answers to my other questions?
Chris, thanks, it's helpful to know I'm not alone. I live in Connecticut. How about you? I was diagnosed with sarcoid via a lymph node biopsy in Dec 2006, but was sick for many years prior.. like many members. I have some brain leisions so neuro-sarcoid is suspected. A neurologist at Columbia in NY says it's definately neuro-sarcoid another doctor who is a rheumatologist says it's looks atypical. Either way I have leisions and neurologic symptoms. I have facial palsy and some minor nerve involvement in my extremedies. I also have a lung nodule but no biopsy to confirm. As far as elsewhere... who knows. I do know that my sarcoid and other health issues are caused by bacteria and MP will cure me. I've learned more about sarcoid from MP than from my doctors or other internet sites. I suspect that you have sarcoid as well. What health issues do you have?
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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natalie17
Advocate
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Posted: Mon Jun 23rd, 2008 03:24 |
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Hi Cathy,
If you sent your application I am sure it was received. To my knowledge, applicants are not being advised they are on a waiting list - I imagine sending out emails like this would be more work for the moderators and slow down going through all the applications. I would just trust that it's been received (I'm sure it has been) and focus on beginning your journey .
As Julia said, you are always welcome to ask general questions here. Many of us have personal experience and your Doctor can ask questions specific to your situation in the Professionals' Forum.
Take good care,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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cathys2007
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Posted: Mon Jun 23rd, 2008 12:31 |
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Natalie,
You are right I should just "focus on my journey". I'm glad this site is available ....everyone is helping me to put things into perspective. I'm usually a person in control of my life and not in need of much help, but the last couple of years I've had to rely on others for a little assistance. I'm thankful for my supportive family, especially my husband. Thanks for the answers. I will try hard to keep my anxiety at a minimum and focus on becoming healthy. Reading some "comfort messures" from the MP-lifestyles site has helped also.
Thanks everyone
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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Jon
Member
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Posted: Mon Jun 23rd, 2008 15:08 |
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Here is a bit of good news for you. I applied a month and a half ago and I was recently accepted into the study. However, the response was not immediate, and I do not know the mitigating factors that made me eligable versus others who may have not been accepted (If there are any). Your prescribing doc. is the one you really need to develop a working relationship with seeing how he/she went far enough to prescirbe the necessary Rx. Good luck on your journey, I'm just waiting for my D results so I can post and take my first dose.
Last edited on Mon Jun 23rd, 2008 15:09 by Jon
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Jon
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cathys2007
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Posted: Mon Jun 23rd, 2008 16:57 |
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Jon
That's great news! I'm glad to know that members are still being accepted in the study. Good luck on your journey as well!
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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cathys2007
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Posted: Sat Jul 5th, 2008 21:07 |
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I think I have everything prepared to start MP. I'm wondering if I may have forgotten something. Here's what I have done so far:
I have an adequate supply of benicar and mino and keto cream, pill case with an alarm, pill splitter, electronic blood pressure machine, NoIR's, cover windows at work and home, I've been eliminiting Vit d from diet and restricting sun exposure, I'm not taking any meds or supplements that are contradicted for MP. I printed out the check lists, phase one info (reviewed many times), and symptoms chart. I have print outs for my family for emergencies, print out about benicar, mino, herx, meds and foods to avoid and what to do if immune reation to strong. I've also sent my application for the study.
Any other suggestions?
I have a question of a personal nature who can I send a PM to?
Thanks
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Sun Jul 6th, 2008 00:37 |
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You might want to add a zinc-oxide sunscreen to your list.
Sunscreen Overview
There are some drawbacks to using keto, noted here:
How does ketoconazole cream work?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Chris
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Posted: Sun Jul 6th, 2008 00:40 |
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I have a question of a personal nature who can I send a PM to?
Cathy,
That's a personal choice. Any of the Advocates will respond. You'll have to review what's been posted to see who might know something about whatever subject it is.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Knochen
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Posted: Sun Jul 6th, 2008 00:42 |
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Also this site for MP foods. (has a zinc oxide sunscreen recipe as well, if you want to make your own scent free variety)
http://mp-recipes.com/mp_recipes.html
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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cathys2007
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Posted: Sun Jul 6th, 2008 02:34 |
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Chris
WOW! There's a lot of info...Thanks I wasn't aware of the zic oxide-sunscreen.
Kochen... thanks for the recipe site
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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cwylie1
Member
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Posted: Mon Jul 7th, 2008 04:34 |
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Hello Cathys2007, Knotchen and everyone else.
I know how you feel about missing the open study. Had I known I needed to apply to be a part of the study, I would've done it in April. <sigh> At that time I still didn't realize the study had been closed until I tried to post my lab results.
Anyway, I sent in my application and will wait to hear if I get in when there's an opening. In the meantime I am working with my doctor who should be on the physician's forum by now. When I last saw her, she was in the process of doing that.
My goal is to restore my health so I began the protocol when everything else was in place. In any case, I have been feeling good, sleeping well and getting work done both at work and at home, so everything's good right now. My herxing is timely with the mino but less than with the Benicar alone, interestingly enough.
The reason I post at this time is to;
1. commisserate with you, Cathys2007, as I know how you feel, so try not to be too discouraged. And,
2. to say THANKS KNOTCHEN for the great recipe for the zinc oxide lotion. I went ahead and ordered the ingredients tonight!!! This is absolutely fantastic to have! A natural, non smelly sunscreen. I have adamantly refused to buy and use sunscreens with all those chemical ingredients. So I thank you again so much!!! My husband really needs this as he drives across the country on a weekly basis. He keeps covered up well and has installed additional sun blocking strips on his truck windows but hasn't been using sunscreen. So he will really appreciate this.
Hope you all have a good IP week and may your herxes be tolerable!!
Carol 
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08, 25-D 43 on 7/28/08. 1,25D-66, 5/02/08; Covered up, r/t to work, NoIRs. low lites.
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Karon
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| Joined: | Sat May 3rd, 2008 |
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Posted: Tue Jul 8th, 2008 04:38 |
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Oh My Cathy...
Reading your post was like reading my own. I too joined the MP in 11/07. I had no idea that we needed to "post in the benicar only forum" to be included! There was no warning!!! I was already a member how could this be?!?!?!
I missed the study by 1 or 2 days
I was so very upset and felt cheated and alone, sad and mad (smad). I knew that the MP was the only choice for me, so I went forward anyway. My Dr. joined the MP in April 08. I sent my application in late April early May as well. I just heard back last week that it was "received" and "may be" considered when space opens. It felt like another rejection!! I see other new MPers that don't even have Dr.s yet, let alone the NoIRS. Makes you wonder what the criteria is!! I am in the last part of PH1 and doing great. I will be starting PH2 early August and am fearful of not having access to the PH2 & PH3 forum. I depend on myself and the MP info (all sites) to help my DR. help me. I am her first MP patient and not her only patient!!!She is so very busy!!!!!
The MP tells you that YOU have to be the one responsible to make sure your Dr. is doing the protocol "as written". To stay informed and study study study. This is great advice and has worked well for me so far. I have had nothing that I could not handle thanks to the Urgent Posts forum as well as so many other Q@A's. Going to PH 2 without the moderatores (Meg) and a Dr. that is learning too makes me feel like I have no net. Maybe I will be accepted in time and I will have been anxious for nothing
I just want you to know that you are not alone and there may be more of us "outsiders" than we ever thought. Hoping that everyone who wants to be an official MPer gets to be. We all want our health back ASAP. No...... I don't mean rush, I mean steady as we go...just go.
You can PM me anytime you want and I will share with you all I have learned and experienced. Good and bad! I've met some amazing people here and you are just one more!
My outside email is listed in my profile , to make it easy......here it is.
karonkerr@charter.net
You Can start now (the 5th)
my Benicar only advice is LAY LOW,
LAY DOWN,
LAY DARK
For at least the first two weeks if at all possible. (two week vacation?)
Keep water and meds right by you!!!
Have a fan near by for the sweats and a blinket for the chills
Always wear a pair of NoIRS outside AND inside.
I have 3 pairs 2% 10% and a 40 % (that I will wear for the rest of my life)
Get good water and drink drink drink.
Movies take your mind off the hormonal adjustment that you WILL have.
I am so much better and was as far as RA symptoms go from the first two weeks on the MP. I can see an improvement every week!! NOTHING ELSE HAS DONE THIS FOR ME!
When this first happened to me I felt as though I was being attacked by something. Some kind of infection...a bug. I even wrote this in a letter to all my Dr.'s before I found the MP.
Turns out I was right and all the Dr.s before were not! The crazy looks hurt my feelings and made me feel defeated at times. Thank god I'm stubborn!
The L-forms had started a battle for my health. I will win the war thanks to Dr. Trevor Marshall.
Meg is only one person. She needs more help so badly. Thank technology for cut and paste, I'm sure its been a life saver for her.
Wish I was qualified to help in a medical way.
Maybe someday in another way I can help her help us all.
Your sister TH1 disease
always here to talk to!
Happily Herxing in Ca.
Karon
Last edited on Tue Jul 8th, 2008 04:41 by Karon
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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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cathys2007
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Posted: Tue Jul 8th, 2008 12:59 |
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Carol and Karon
Thanks for your support.
Karon thanks for the PM offer. Others experiences provide discoveries that help to support in many ways. For example, Chris shared information about zinc-oxide, I wasn't aware of it.
Access to others experiences for Ph1 has made me feel better equiped to handle my journey. I'm nervous about Ph2 and 3 also. The support we could get from access to Ph2 and 3 forums is unquestionable. Hopefully, by the time we get to Ph2, there will be something in place to help us.
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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