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headsuppoka
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Posted: Sun Jul 6th, 2008 08:37 |
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ty for the reply
I have read the guidline for excercise thread and the advice seems to be very vauge.
"I have seen no evidence that exercise will help a patient heal, and there are biochemical pathways which suggest that exercise will actually slow the healing by exacerbating the disease process." ..Trevor..
Keep in mind that exercise that is strenuous enough to increase your body temperature may increase antibiotic tissue perfusion which could result in a stronger immune system reaction. This may be a desired effect for some.
"Exercise causes mechanical stress even at the cellular level, and do increase the amount of bug-killing. Both are helpful, especially in latter stages, but don't overdo them, as this is just as bad as taking too high a dose of abx ..Trevor..
i dont really get it, does this mean that exercise can be done with no worries if change in herx is minimal? and that it will help in some cases? does the first statement only apply in the fact that exercise is not beneficial if not on the MP?
thanks
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headsuppoka
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Posted: Sun Jul 6th, 2008 10:53 |
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thanks for the reply, i know you are very busy aroud here.
so if I am understanding this correctly:
aerobic excercise e.g. jogging should not be done a lot due to imunosurpressive qualities, but
strenuous excercise e.g. doing a pushup may expose bacteria to the immune system, increase herx and therefore kill more bacteria? this would be helpful if symptoms are tolerable?
thanks
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Chris
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Posted: Sun Jul 6th, 2008 20:04 |
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Headsuppoka,
Heavy exercise is immuno-suppressive. But long before you get to that level, the extra blood flow causes better perfusion of the antibiotics into body tissue, and the physical stress can break open fibroid encapsulated bits of infection. Gentle exercise can cause heavy herx.
Are there any guidelines on exercise during the MP?
The problem with exercise as a herx generator is that it's unreliable.
From the link above: "Some have had post exertional malaise from something as small as less than 1 minute of Tai Chi type movements, so until it is the time.... it is not the time."
-- Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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headsuppoka
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Posted: Fri Jul 18th, 2008 21:25 |
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Hi
Thanks all for the replies, I know Im not a member of the study site so I appreciate all the help I have been getting. I have a few more questions:
MP recommends a low carb diet but does not specify how low this needs to be. Since starting the MP my appetite has become more ferocious (getting back to normal lol) and I need to eat 3,500 calories plus a day. So How much carbs or refined sugar is too much for me?
Another thing I have been wondering is what is the definitive answer on vit-d in canola oil? So many foods have it as an ingredient and I have no idea about it. In the foods thread it is not mentioned to have vit-d in it but I am under the impression that it is made from rape seed which is a yellow flower??
I have been reading more about the science involved in the MP and am I right in assuming vit-d is largely regulated by the body (and bacteria)? Therefore less ill people will have greater ease lowering their 25-D levels with less effort on their part with vit-d avoidance in diet?
With regards to my progress I have only spent 1week on each level of mino. I find I can only get a decent herx the first 1-2 doses out of the 4, then nothing. My speed of progression is fine???I just had my last dose of 75mg mino after 1 month into the MP
Thanks to anyone who can reply to this 
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Aussie Barb
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Posted: Fri Jul 18th, 2008 23:04 |
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| Do you know your 25D level? thanks, Barb..
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headsuppoka
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Posted: Sat Jul 19th, 2008 15:35 |
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| 26 before going on any vit-d avoidance diet.
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Aussie Barb
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Posted: Sun Jul 20th, 2008 07:39 |
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see information in How often should I test D levels? What are the target numbers?
As your initial 25-D was above 20ng/ml: It is recommended that you retest your 25D to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D..
Thanks, Barb ...
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headsuppoka
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Posted: Mon Jul 21st, 2008 23:38 |
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hi thanks for the reply barb i will get it tested again
can anyone comment on these questions though?
MP recommends a low carb diet but does not specify how low this needs to be. Since starting the MP my appetite has become more ferocious (getting back to normal lol) and I need to eat 3,500 calories plus a day. So How much carbs or refined sugar is too much for me?
Another thing I have been wondering is what is the definitive answer on vit-d in canola oil? So many foods have it as an ingredient and I have no idea about it. In the foods thread it is not mentioned to have vit-d in it but I am under the impression that it is made from rape seed which is a yellow flower??
I have been reading more about the science involved in the MP and am I right in assuming vit-d is largely regulated by the body (and bacteria)? Therefore less ill people will have greater ease lowering their 25-D levels with less effort on their part with vit-d avoidance in diet?
With regards to my progress I have only spent 1week on each level of mino. I find I can only get a decent herx the first 1-2 doses out of the 4, then nothing. My speed of progression is fine???I just had my last dose of 75mg mino after 1 month into the MP
thanks
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JRFoutin
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Posted: Tue Jul 22nd, 2008 00:34 |
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Headsuppoka,
Low carb does not mean "No" carb.
Calories are sort of an old concept as far as I can tell. I'm more concerned with what my body (and pathogen load) does with food right now, not what the burning point for some food source is in a sterile environment (wink).
Sugar feeds the bugs.
Do not feed the bugs.
Splenda is a sugar substitute to keep in mind and on your shelf.
There are some on the MP who cook with Canola from rapeseed, the yellow flower plant. Some use olive oil (my personal favorite, but that's not an MP requirement that I'm aware of).
Develop your own decisions about foods after reading:
VITAMIN D Tutorial Calciferol and Calcitriol
Vitamin D is supposed to be regulated by the body (and should when one is well), but pathogens sort of "hijack" the correct process because it makes a nice place for them to live.
Try to read the MP information on Vitamin D and stick with that. Much of what is floating about in common literature and the popular press is not informed about the Marshall Pathogenesis which describes the molecular interactions with the VDR (vitamin D receptor), 25D/1-25D, and the innate immune system, and the important understanding about what metagenomic colonies of biofilms actually do to receptor signalling. Without that critical piece of the puzzle, it is easy even for experts to be led to the wrong conclusions.
Your situation vs a general perspective
What people are taking and their progress with the MP is reported on the study site if they are a member of the study, but never in CureMy general questions thread.
A general answer for CureMy: The Marshall Protocol suggests 25D is in therapeutic range of 12ng or below for ideal response. Again, generally (and any one person might vary based on other variables that nurse moderators on the study site or your doctor can discuss in the private section for medical professionals), the scenario to avoid is zipping through initial phases (at amazingly relative ease and little response) while 25D is not yet in the therapeutic range.
Generaly speaking again, it is not expected to be a pleasant intersection when the ideal 25D range for the immune system to function finally arrives just as one enters into advanced MP option sets. Pacing rationally through the process is something a person and their doctor can determine with 25D levels in mind.
Best to you Headsuppoka--Janet
____________________
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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headsuppoka
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Posted: Fri Jul 25th, 2008 20:13 |
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Hi again
Thanks for all the replies and help I have got thus far.
Im ready to start phase 2. How do I do this?
Thanks
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JRFoutin
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Posted: Fri Jul 25th, 2008 21:33 |
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Head,
Your most obvious and neccessary option for action is to call your doctor, who can get the details that exist right now. Your doctor is your health care provider, and is in charge of the prescription medications taken for the MP as well as monitoring your health.
There is likely some value to get the revisions coming later, but if your time frame says now, then you need to talk to your doctor about it -- now.
Doctors get the details directly when they are member of the
Private Section for Health Professionals
This private section is reserved for Health Professionals: for the discussion of study methodology, results and the science.
Phase 1 is sort of like an onramp to to a clogged freeway. Mostly just annoying by comparison to the slow uphill grind behind 3 semi's on a single lane of traffic in the worst snowstorm ever that Phase 2 can be.
You do want to have a very open discussion with your doctor about now, and both of you come to clear idea of what is going on from your phase 1 experience. Even more, your doctor should be highly motivated to be prepared (and staying in close tabs with you and the professionals section) to pay close attention to monitoring your health at the onset of phase 2.
Take action Head--Janet
____________________
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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headsuppoka
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Posted: Fri Jul 25th, 2008 22:19 |
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There is likely some value to get the revisions coming later
Thanks for the reply. What do you mean by this though? And how later is later? Are the recommendations for phase II being changed?
My doctor isn't even an MP doctor, just one that is willing to prescribe the meds and is aware I am on this treatement. There are no MP doctors with in a few hundred KM so I have no other choice but to use her.
I will have to pay her extra to do any more than prescribe the meds and I dont want to do that.
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JRFoutin
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Posted: Fri Jul 25th, 2008 22:32 |
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Head,
There is no MP doctor per se anywhere, this is a non-issue.
Your doctor (like all others working their way through learning about the MP), however, can be encouraged significantly by you to do more than assume the MP is like everything else and errantly move in this and that of status-quo-business-as-usual monitoring and response pattern rather than learning carefully at the study site ... which can be problematic for you or really NOT the MP.
Safety warning
Revisions that are coming will reflect the current direction of treatment needs without the assumption of membership support on the MP study site. It is still the same old MP, just with directions without membership assumption.
When these instructions arrive, your doctor can appreciate those details but it isn't going to be a different MP. Also, just like now, s/he will still be the one that has to work the MP correctly with you and your doctor will still want professional level membership for the best possible outcome for both of you.
Best to you Head--Janet
____________________
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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headsuppoka
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Posted: Sun Jul 27th, 2008 03:21 |
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JRFoutin wrote: Head,
There is no MP doctor per se anywhere, this is a non-issue.
Your doctor (like all others working their way through learning about the MP), however, can be encouraged significantly by you to do more than assume the MP is like everything else and errantly move in this and that of status-quo-business-as-usual monitoring and response pattern rather than learning carefully at the study site ... which can be problematic for you or really NOT the MP.
Safety warning
Revisions that are coming will reflect the current direction of treatment needs without the assumption of membership support on the MP study site. It is still the same old MP, just with directions without membership assumption.
When these instructions arrive, your doctor can appreciate those details but it isn't going to be a different MP. Also, just like now, s/he will still be the one that has to work the MP correctly with you and your doctor will still want professional level membership for the best possible outcome for both of you.
Best to you Head--Janet
Thanks for the reply.
How do I get my doctor to become a member of the private section. Do I just get her to register here? Not to clear on how she does this..
Thanks
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Aussie Barb
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Posted: Sun Jul 27th, 2008 05:15 |
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Q: How do I get my doctor to become a member of the private section. Do I just get her to register here? Not to clear on how she does this..
Here is the link:
Private Section for Health Professionals
Thanks, Barb ...
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headsuppoka
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Posted: Tue Jul 29th, 2008 23:57 |
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hmm
I went to see my dr today and she wont proscribe the first phase 2 anitbiotic. She said that it is only prescribed here for clymidia and she fears taking that low of an inital dose will cause resistance. I have directed her to the study site in hopes she signs up and then prescribes the meds. I dont know what the hell im going to do otherwise.
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Aussie Barb
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Posted: Wed Jul 30th, 2008 00:09 |
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some information for Doc:
Won't the bacteria become resistant to the antibiotics if I take them a long time?
Members' Success Stories may also help.
best, Barb ...
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JRFoutin
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Posted: Wed Jul 30th, 2008 05:55 |
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Head,
Glad to see you have pointed your doctor to the study site forum, with real intent. If I was in your shoes, that is where I would be expending my best efforts.
I think your doctor needs to have a copy of the phase 2 guidelines to read and you should both carefully go over the details together. Seems a detail or two was missed, in addition to some critical understanding about MP immunopathology.
Please be sure to read the links Aussie Barb gave you as well. Potential communication or doctor motivation dynamics are just another reason why all are encouraged to go through the required reading and resources carefully and thoughtfully, and take the time to study the pathogenesis/science details.
Best to you Head--Janet.
____________________
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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headsuppoka
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Posted: Wed Jul 30th, 2008 21:06 |
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Thanks Barb and JR for the replies.
The link on the bacteria resistance is helpful but she was particularly worried about taking the initial low does of the phase 2 antibiotic. I am going to go see her again today to make sure she signs up at the site and to get a prescription for it. Is there anything I can take to convince her of the safety of taking low dose phase 2 antibiotic? I have been at 100mg mino for a week and a half and dont want to be stuck in phase one.
I wish I could explain to her in words exactly how the MP works but I am not confident in giving a presentation on the science. My body however tells me it is working. Since completing phase one my headaches and brainfog seem gone for the most part. In regards to my other symptoms, when Im not herxing I feel like I have travelled 2-3 months back in time. This is very exciting for me but extremely annoying to have to convince another person that I need to continue with this protocol.
Thanks
[moderator edited to remove name of phase 2 med]
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JRFoutin
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Posted: Wed Jul 30th, 2008 22:37 |
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Head,
Your doctor needs to understand the MP or you won't get the MP.
Your doctor can and must have access to documents and she must monitor your health per law.
Ain't happening without her getting involved, and you have a right to ask her to get to the task you have already started with her. You hired her. Ask nicely, but be firm where your boundaries are and what you expect.
Another bottom line your doctor needs to pay attention to is her business case. If she wants to know where her business will be in the next 10-20 years of her career, she might want to get the jump on it and join the Professional's site now.
Hundreds of us gettting well on the study site and many more elsewhere cannot be ignored. She can run but she can't hide (LOL).
Simplify her process to capture required info when you meet with her. Print out only a few, well chosen and time appropriate information sets. Use no more than 3 post-it tabs or highlights that snippet the info most relevant to your visit.
Papers and Presentations for Physicians
Why won't my doctor consider the Marshall Protocol? Why Doesn't My Doctor Know This? Consensus science, Medicine is a business.
Best to you Head--Janet
____________________
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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