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expate
Member
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Posted: Mon Jun 2nd, 2008 21:18 |
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Thanks Janet. This looks just like what I need.  And there's even a page that organizes the material into a sequence for those of us who don't know where to begin.  Here's the link: http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/F/FallTerm.html
As Julie Andrews once sang, "Let's start at the very beginning, a very good place to start..."
*sighs deeply*
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Tue Jun 10th, 2008 04:15 |
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Blood pressure seems a concern of both patients and doctors. When I do a search in the FAQ section of the MP site "monitor blood pressure", the most pertinent information to my question seems to be that the patient's doctor will determine how s/he wants to do so. From postings I've read, it seems some patients monitor at home. Some doctors are concerned about low bp.
Question: Given that it seems bp does go low, and dizziness is common, and both seem to be due to IP, if I am comfortable with the concept that low bp and dizziness is due to IP, do I need to monitor it? Or, as the FAQ states, my doctor is the determinor (is that a word?) of that? And, if so, given that there are no doctors "certified" in the MP, should I take monitoring bp into my own hands just to have some numbers on hand?
Odette
P.S. -- editing here to say that my bp is normal to sometimes low already.
Last edited on Tue Jun 10th, 2008 04:17 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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natalie17
Advocate
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Posted: Tue Jun 10th, 2008 06:07 |
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Hi dette, (I like it how you sign your name like that!),
You seem very well read-up on the MP, so I assume you've read the following, but just in case;
My blood pressure is already low. Can I take Benicar?
Blood pressure monitors
I think whether you monitor your BP or not is a personal thing (unless your Doctor insists). It is not neccesary - but I do it as a part of keeping track of my IP and checking for patterns. So, for example, if I wanted to have a visitor next week I might be able to say 'I'll avoid Tuesday because I am more likely to have low BP and be dizzier that day"... based on the patterns of my past. This is only because I know low BP affects me.
In the end you are under the care of your Doctor and if he or she wants you to monitor your BP then you must follow his or her instructions.
In response to your Julie Andrew's lyric - my favourite quote for a long time and then especially upon starting the MP has been ;
"A journey of a thousand miles starts in front of your feet" - Lao-tzu
Take 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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expate
Member
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Posted: Tue Jun 10th, 2008 08:01 |
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Thanks Natalie. I'd say I'm mildly well read on this. Alas, I am not a science type  but do my best to understand  .
I have a bp cuff available at my pharmacy and at my local YMCA. Given what I've read, I think I won't worry so much about numbers. However, I will ask my doctor how he feels about me keeping track of my bp. If he's more comfortable with me monitoring it regularly, I will do it. If he doesn't think it's significant, I won't worry.
But I will keep your advice in mind -- about using bp as a way of charting IP. I can't wait to really start attacking those vermin.  Start date for meds still July 16. Meanwhile, whittling away at "D".
Thanks,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Sun Jun 29th, 2008 19:55 |
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I have a question that is probably very basic. I have done a search but am not finding an answer. Sooo...
I understand (I think ) that it is the body's immune system's reaction to cytokines produced by dying bacteria that causes immunopathology when following the MP. But what causes the symptoms of the various Th1 diseases when not treated? Do the bateria produce toxins while alive? Or is regular bacterial die-off responsible for disease symptoms and when the bacteria reach some sort of critical mass and have more die-off, then disease symptoms present and progress?
So, if the shutting down of the immune system through the binding of the VDR's allows the bacteria to proliferate, with a less functional immune system, what is causing the symptoms of disease?
I hope my question makes sense. It's one that always pops up in my mind as I try to explain how the Marshall Pathogenesis works.
If anyone can point me to the answer, I'd appreciate it.
Thanks,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sun Jun 29th, 2008 20:07 |
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Odette,
Several things are in play here. One is that the high levels of D,1,25 are in themselves not a good thing.
Hypervitaminosis-D Symptoms
The other is the simple fact that the infected cells don't work as well at their normal function as would a healthy cell, regardless of any released cytokines.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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birz
Member
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Posted: Sun Jun 29th, 2008 21:15 |
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Interesting my first thought just two days ago when I was reading about sunlight was that I needed a purple burgas - so glad to see kindred souls. Made me smile. - Birz
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MCS, CFS, F, IBS, Celiac, 2 heart attacks 2006, drug eluding stents 2006, Lyme, Epstein Barr, Low thyroid, Low Lithium.
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expate
Member
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Posted: Sun Jun 29th, 2008 23:58 |
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Great minds and all that...
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Mon Jun 30th, 2008 02:39 |
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Thanks for the reply, Chris (BTW, I enjoyed reading the interview with you. What a lot you have been through!).
I had read the link to hypervitaminosis D and have now re-read it. It describes the symptoms. But I guess my question is a little different. Let me try again.
As I understand it, symptoms to a viral infection (cold, flu, etc.) are the body's immune system's response to that infection. So, the watery eyes and runny nose of a cold are not due "directly" to the virus but to the immune system's reaction to the virus.
Is that true for bacterial infections as well? If it is, then what causes the symptoms of disease if the immune system is shut down by vitamin D? And where does auto immune fit into this?
Again, I'm sorry to ask such basic questions. Is there some place I can read about this?
Thanks again,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Sat Jul 5th, 2008 04:06 |
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I just have to give a shout out...
!!!!! I have a three month supply of Benicar and Minocyline in hand to begin when I get back from California (I leave tomorrow) that my insurance paid for!!!!!!!! No questions. My pharmacist at Walgreen's worked with me on it, but it went through without need for prior approval or anything!!!!!
Wow, I've got my ducks in a row, just waiting to begin.
Cheers,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Thu Jul 17th, 2008 18:03 |
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Just an FYI, I took my first Benicar this morning!
I've begun wearing my NoIRs indoors now and will put all my fretting over being able to "cover up" into play today.
Here goes...
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu Jul 17th, 2008 23:23 |
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Congratulations Odette!
You've had a long time getting ready and I hope your study and many efforts to learn will help you move in the direction you want to go, and ease the transition into the actual process of doing the MP.
You might make your own online spreadsheet, hand-written graph or use existing notation pdfs in link below to keep track of big picture trends that can get lost in day to day linear text notes (which are good for many reasons too). Your health care team will appreciate what you can see from your perspective.
Downloadable MP Documents, Phase 1
Best to you Odette--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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expate
Member
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Posted: Fri Jul 18th, 2008 04:53 |
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Janet,
Thanks for the links and good wishes!
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Sun Jul 27th, 2008 18:13 |
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I like your new photo, Janet.
Question - I was reading about sarcoidosis on wikipedia and found the following:
"Sarcoidosis occurs throughout the world in all races with an average incidence of 16.5/100,000 in men and 19/100,000 in women. The disease is most prevalent in Northern European countries, and the highest annual incidence of 60 per 100,000 is found in Sweden and Iceland. In the United States, sarcoidosis is more common in people of African descent than Caucasians, with annual incidence reported as 35.5 and 10.9 per 100,000, respectively."
Does the correlation of higher incidence of sarcoidosis in Scandinavian countries and African Americans have some possible significance in relation to the Marshall Pathogenisis? Maybe something about excess skin exposure due to no accute ill effects like sunburn?
Just wondering...
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dr Trevor Marshall
Research Team
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Posted: Sun Jul 27th, 2008 19:25 |
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Odette,
Wikipedia is written by programmers pretending to be medical experts, when they have nothing better to do with their time. Please do not believe anything you read there.
The pure Physics and Chemistry on Wikipedia is more reliable, but the medicine topics are totally unreliable.
For example, everything I have ever posted there about Vitamin D was erased. Especially the stuff describing its steroidal actions... You only need one teenage zealot with time on his hands, and a lifetime's work can disappear from Wikipedia...
Last edited on Sun Jul 27th, 2008 19:57 by Dr Trevor Marshall
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Dr Trevor Marshall
Research Team
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Posted: Sun Jul 27th, 2008 19:55 |
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Scandinavian countries do have a high incidence of Sarcoidosis. Is it higher? Well, that depends on lots of factors.
In Japan, for example (where the MP is already more advanced in the consciousness of pulmonologists than in the USA) most sarcoidosis is diagnosed by opthalmologists, from the eyes. In the USA, opthalmologists are not trained to do this, and so patients are only diagnosed when their Xrays look really bad. So you can see that trying to compare incidence among different cultures is fraught with uncertainties.
The definitive NIH ACCESS study did not show that African Americans have a higher incidence of Sarcoidosis. This concept results from a medical myth. The pulmonologists have been happy to allow it to persist, because more money is allocated to their research of a 'minority' disease that way.
see: http://autoimmunityresearch.org/sarcoidosis.pdf
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expate
Member
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Posted: Sun Jul 27th, 2008 23:16 |
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Thanks for the info and perspective. Great that the Foundation is making the NIH ACCESS Study more widely available.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dr Trevor Marshall
Research Team
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Posted: Sun Jul 27th, 2008 23:47 |
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That brochure is 5 years old now.
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expate
Member
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Posted: Mon Jul 28th, 2008 05:41 |
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You can see I joined this board on April 18th, 2008. Even when I joined, I had never heard of sarcoidosis. I see that many in this study have a diagnosis of sarcoidosis. I am trying to educate myself.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Tue Aug 19th, 2008 17:47 |
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I got the results from blood work today. My D 25 did go down, but I don't know if I should be discouraged or not. I've gone from 38 to 34 and well, that is good. But I was expecting, oh, 29 or so. I wanted it to be more dramatic.
I'd been "watching" my diet for three months and then been totally compliant for about 4 weeks now.
So, it's progress, but it's slow. I don't know if this rate of reduction means I should be extra vigilant for possible unknown/unrecognised sources of D in my diet or if I'm OK. Does this rate of reduction mean I'm covering all bases? Should I be more vigilant?
Thanks,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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