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Jayppers
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Posted: Sat Sep 6th, 2008 00:18 |
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Great suggestions, Janet! Thanks a ton for taking the time, I greatly appreciate it.
I'm happy to note that I've informed my mother about the MP and she seems to understand the concept very well. I provided her the link to the overview article on Amy's Bacteriality site and she read that. The good news is that she is going to accompany me to my Doctor's appointment on Monday to express her concern over my health (both physical and mental) and support my requests for the vitamin D tests (done correctly, as I request). This has helped me calm down and become more confident about the meeting.
I've finished compiling my documents, and I've managed to get myself to OfficeMax, which has allowed me to put all my documents together very neatly and professionally in a nice neutral black binder. I have dividers and all that good stuff, and it is full of the best articles and documents, in the appropriate order (starting with the Physician's Guide PDF at the very beginning, so that is what you see when you open the binder. I also included my typed 'Previous Diagnoses & Current Symptoms' 1 page paper in the front sleeve for quick easy reference. I'm very proud of what I've put together and I almost don't want to give it away because it looks so nice, if I may say so myself! " P
I feel confident in my knowledge of the MP, and think I can explain the science quite well after a few weeks of reviewing so much material.
Thanks and best regards,
Jason " )
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Sat Sep 6th, 2008 21:37 |
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Well done, Jason, you're giving yourself every opportunity for success. Make sure you have your own copy of that precious ring binder, or could make it up again quickly. I gave my first to my doc and my second to my nice-but-sceptical endocrinologist. Then I had to make another for a sick friend! 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Sat Sep 6th, 2008 22:33 |
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Hi and thanks for the suggestion, Julia.
I am going to try and pop back over to OfficeMax or Staples this evening (when the sun goes down " ) to pick up another binder just in case.
I should be able to reproduce the contents very easily since I have downloaded the PDF documents for most of them -- and the others are easily printed from web-sites like Bacteriality.com.
I'm going to make a list of the content of the binder just so that if I have to recreate it, I can easily pinpoint what items I need to print. If my primary care physician does not agree to pursue or consider the MP, then I simply will request he provide the portfolio I put together back to me.
Thanks and have a great day!
Best regards,
Jason " )
P.S. I got some new sunglasses today. They aren't noIRs, but they are supposed to have full UV protection and they form fit and cover my eyes completely, which is nice. And they actually look pretty good. Of course, if I ever get to the point where it is indicated and I start the MP, I will of course order the noIRs, but I'm not even close to crossing that bridge yet.
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Jayppers
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Posted: Mon Sep 8th, 2008 15:33 |
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I had my doctor's appointment this morning.
I am very disappointed in myself. My doctor kept going on and on about anti-depressants and the like, and I just had myself convinced that he would not be receptive to the proposal of the MP.
I had my portfolio ready for him and all. My mother even noticed I was reluctant to mention the MP and brought it up to the doctor. I then shied away from talking about it.
I failed myself today. The best I could do was go back inside the office, while in tears, and ask the nurse to hand over the MP documentation I put together to my doctor for him to review.
I don't know what to do now and I feel like I'm not even capable of helping myself now, even when I have my mother by my side.
I'm feeling pretty bad about myself right now. I can't believe I acted so childish.
" (
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Tue Sep 9th, 2008 00:31 |
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Jason, I'm sure you're kicking yourself, but you need to put that behind you now. Perhaps your doc will actually read the stuff, perhaps not. Give him a while, then ring and see if you can have another appointment, this time specifically to discuss the MP. If he won't, then it's time to try another doc.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Wed Sep 24th, 2008 01:42 |
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Good news
One, is that I'm still around and trying to find out if I fit the mold for Th1 inflammatory disease.
Two is that apparently my general practitioner has actually reviewed the documentation I prepared for him. After making my last post, I wrote a two page letter to my PCP explaining to him information about the MP, why I'm requesting the tests, and how I was intent on having the tests conducted, properly, be it with him and his office/staff or another doctor, so to let me know either way whether he would request the tests for me as the MP outlines.
I've received two phone calls/voicemails from his nurses in the past two days requesting I call and schedule to come in and have the blood drawn to have the lab work performed. It seems that things have worked out and he has decided to request the D metabolite tests.
It seems to have taken him two weeks to review the documentation I prepared and come to a decision to allow me to have the blood work done. Given that amount of time, I had pretty much forgotten about that option with my PCP. This literally has caught me in complete surprise.
The next step is to call in and schedule a time to have the blood drawn. But, the more important piece is to drill the nurse(s) as to what arrangements have been made to ensure that the blood samples will be stored as outlined by the MP. If there is no indication that preparations have been made to centrifuge and freeze the samples per the recommendations and send them to Quest Diagnostics, then I will be requesting to speak with the doctor prior to scheduling my appointment.
I will do my best (considering my ever advancing brain fog) to review the D metabolites test thread on the MP.com site (http://www.marshallprotocol.com/forum2/366.html)and ensure everything is followed correctly to ensure the most accurate test possible.
Being off the exogenous D has been interesting to say the least. The brain fog is scary and living in what feels like a cloud and a dream state is very concerning. I realize now how almost addicted I was to the D b/c of how good it made me feel... the hormones... Without it, I'm very much a log. I gotta find my way out of this, and soon! "_
Wish me luck. Thanks and best wishes.
Jason " )
Last edited on Wed Sep 24th, 2008 01:50 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Wed Sep 24th, 2008 12:35 |
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That's great, Jason...  All the best!
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Lind
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Posted: Wed Sep 24th, 2008 21:20 |
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Jason,
I just found this forum a few days ago and want to tell you that you have encouraged me to plug forward. My symptoms are very similar to yours, same story;
GI doc after doc, colonoscopy x 3 in the last yr. They find changes including ulcers, but biopsies always come back negative. The latest is I need to exercise more, take cymbalta and mega dose on D.
I'm so thankful that I found Dr. Marshalls Protocol, but have the same fear as you about talking to my doctor. I am trying a doctor from the list tomorrow and hoping he is knowledgeable enough to listen to me. If not, I will make a presentation like you did and take it to my PCP (slip it under the door and run  ).
I don't know why I let the doctors intimidate me so, but your story is giving me courage.... good luck to you and THANKS.
____________________
Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Jayppers
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Posted: Wed Sep 24th, 2008 22:45 |
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Wow... I'm so glad that my lack of courage, or minimal courage is at least inspiring someone! I'm very glad to hear that this has helped you, Lind. I wish you all the best. At the very least you can do what I did, prepare a professional looking portfolio with all the best documentation and write him/her a letter explaining things. I found this easier for me to do, and it seems to have worked out for me! Best wishes, Lind.
Progress Report
I went in and had my blood drawn this afternoon, at 1:30 PM, for my 25-OHD and 1,25D metabolite tests.
There was a Quest lab tech. there to draw the blood and she confirmed that it would be let to clot for at least 30 minutes before being centrifuged. She also confirmed that it would be frozen after that as well, and that the receiving lab would reject the sample(s) if they were not in the frozen state.
They also put all the possible/applicable diagnoses on along with the test to give me the best chance of having it covered by insurance (fatigue being one, which is absolutely true). She said there is a chance my insurance might not cover it, but perhaps they will. But she prepared me for that at any rate, informing me that it would be around $500 for the two D metabolite tests if not. I told her I didn't care and I still wanted them done, and done accurately per the instructions.
She had made a copy of the instructions and such for herself that I saw laying on the table in the room, and she told me she reviewed the MP documentation I prepared for my PCP. So, I don't think I could have requested that to go any better than it did. It seems like things so far have gone 'textbook' to the MP.
She said she'd been doing it for 26 years (my age!) and that she knew all the ins and outs of how to properly handle the D samples (30 minute clot, centrifuge, then freeze).
I called in later about 2:30 PM a she told me it was already prepped, frozen, and out the door! Should get the results back in a several days since it's got to be shipped to either CA or VA via air (hopefully on ice the whole time -- which I'm not worried about, they seem to know what they're doing). And I expressed my concern on accuracy and precious handling given the potential out of pocket cost and delicacy of the samples & test procedure.
So, now it's the waiting game. " ) I'm very pleased I've made it this far, and very happy my doctor at least took me seriously enough to oblige my request for the tests. At least not I know that he doesn't think I'm as crazy as I think he thinks I am... hehe " )
Whether he would consider treating me with the MP is another story, but I'll cross that bridge when I get there. One step at a time.
I'll be sure to post my results here, as well as the D result analysis thread, the moment I can.
Thanks and best wishes.
Jason
Last edited on Wed Sep 24th, 2008 22:48 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Lind
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Posted: Fri Sep 26th, 2008 01:42 |
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Thank you again Jason. I followed your lead and prepared a very nice indexed booklet for my new doctor. He was impressed and listened intently to me. He is only treating one other patient with the MP and knows something of it, but admitted he is not an expert. I was so relieved.
He sent me to Quest labs where they were awesome and reassured me that the samples would be handled with utmost care. So now it is just a waiting period to get the results. He did say my history fit the criteria for Th1 infection.
Anyhow, thanks again for the great suggestion of a booklet of info. I divided it into sections; letter from me, letter to the doctor from the MP website, Ph1 guidelines, Vit D and the FDA paper, Labs, and the Documentation reference. I think it made his job easier and meant less I had to explain. The more you know the better.
Lind
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Jayppers
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Posted: Sat Oct 4th, 2008 20:44 |
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Still waiting on the results of my 1,25OHD3.
I did get back my 25OHD though. It has come down 23 ng/ml since my last test, when I was high dosing vitamin D3 supplements. It was 63 ng/ml, it is now 40 ng/ml. Still somewhat high from my previous supplementation, but seems to be coming down.
It seems that the 1,25OHD3 will be the primary indicator for me, so I'm anxious to get the results back on that. Will share once I've received them " )
Regards,
Jason
Last edited on Sat Oct 4th, 2008 23:34 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Sat Oct 4th, 2008 21:32 |
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| Jason, that's good progress in D avoidance
____________________
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Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Wed Oct 8th, 2008 15:09 |
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Thanks, Julia. It is now a rest-of-life thing that I'll be avoiding exogenous D3 knowing what I now know about how it directly suppresses cell mediated immunity. It's terrible to think of how for so long I was in denial about the MP hypothesis and was slamming high doses of D3 supplements. <shaking head>
I am still waiting to get my 1,25D3 results back. It's kind of slow torture waiting for the results.
How long does it typically take for the results to come back on this test? I would like to know so that I can have a reasonable expectation as to when I should hear something back from my doctor.
Today will have been 14 calendar days since I had the blood drawn. I'm guessing I should be hearing something back any time now (hopefully).
Another Q: Does vitamin A act as an immune suppressant similarly to exogenous vitamin D3 (aside from the fact that it can bind to and displace 1,25D from the VDR)? The reason I ask is because I know that retinol/retinyl palmitate as found in animal foods gets converted into steroid hormone(s?) after ingestion (i.e. it rapidly crosses the blood/testis barrier to form testosterone, etc.). But I've been reading a lot about how vitamin A is capable of stimulating T lymphochyte and natural killer (NK) cell proliferation, which are components of Th1 immunity (including Th1 cytokines like IL-2, IL-12, etc.). My apologies if this question is a bit too technical for this forum.
Thanks very much for taking the time to review my post!
Jason " )
Last edited on Wed Oct 8th, 2008 15:20 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Jayppers
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Posted: Wed Oct 8th, 2008 17:47 |
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I should also mention that I've stopped all fish oil and polyunsaturated fats, since I now understand that they are very strong suppressors of the immune system (exogenous vitamin D3 aside).
I've been poly oil free (except fish oil) for a number of years now, but had still been taking fish oil here and there. I now understand that fish oils are even more unsaturated than poly veggie oils, which actually makes them even more immunosuppressive!
Researching this yesterday I learned that fish oils greatly suppress T lymphocytes and natural killer cells (cytotoxic T lymphocytes), as well as Th1 pro-inflammatory cytokine Interluekin-2 (which I believe stimulates T lymphocyte proliferation).
Just making some notes to myself, I suppose. No questions in this post.
Thanks,
Jason
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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natalie17
Advocate
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Posted: Thu Oct 9th, 2008 02:23 |
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Hi Jason,
You're question is too technical for me but it certainly won't be for many other advocates and moderators, soo if there's something to add I'm sure it will be added.
All I can offer is this;
Dairy products should be free of added Vitamin D, and contain no more than 6% of Vitamin A.
: 6% of Vitamin A restriction is only used as a guideline to suggest that a product might also be fortified with Vitamin D and not labeled as such. eg. not referring to carrots.
Apart from that I can say I haven't read anything else about avoiding vitamin A, which in my opinion means that even if it is immunosuppressive, it's not enough to interfere with the MP.
Hope that helps a little,
Natalie
____________________
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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Jayppers
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Posted: Thu Oct 9th, 2008 14:13 |
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Thank-you, Natalie. Althought your reply hasn't directly answered my question, I appreciate you taking the time to provide that information for me. I'm currently not taking in any dairy products at all, so I feel that that subject is a non-issue for me at this time.
I am struggling right now, mentally and physically.
I've been avoiding exogenous vitamin D as well as sunlight and bright light exposure altogether since late August. It is very clear to me that I am immunocompromised. I have been struggling with a sore throat (upon swallowing, etc.), general malaise, and a light feeling of pain in at the back of my mouth. At times it feels as though my lungs are 'hot'... I don't really know how to describe it, but they feel inflamed and pretty uncomfortable -- just sick feeling. I have no congestion or mucous, etc. though.
To add some background, I've previously had one occurrence of reactivation of the chicken-pox virus, as shingles in the past 2-3 years or so. I think that it is now being reactivated again, because I have this one tiny little red sore with a little bit of scab on it on the left side of my chest, close to my underarm area, and this is where shingles manifested physically for me previously.
I also seem to be experiencing a lot more ulceration of tissue in my mouth, particularly the tissue below my lower lip on the inside of my mouth (which I know is typical of Crohn's and IBD -- and I do suffer with a lot of digestive problems, even though my tests have cleared me of having Crohn's or any IBD).
My question for any of the advocates is whether these symptoms and signs are an indication of my immune system being further compromised, or whether this is a positive indication that my immune system is actually kicking into action and responding to pathogens once again, now that I have eliminated immunosuppressive agents such as fish oils, and more importantly, exogenous 'vitamin' D?
I read previously that those on high dose D and getting much sun, etc., might experience problems when dropping the D and sunlight exposure due to the fact that the immune system might start coming back online and killing CWD bacteria and/or co-infections.
I can live with these problems knowing that it is actually my immune system perhaps coming online again, but if these are indications that my immune is beginning to struggle more, then I would want to start trying to figure out why all of a sudden I am regressing and try to find something I can do to manage the problems.
Can any of the advocates help me with this? I realize that this isn't directly MP related, but I do feel that it is a related question given my changes in lifestyle that coincide with the MP (beyond Benicar and antibiotics).
I realize I'm posting faster than advocates are having the ability to reply to, but I have to get these thoughts out of my head and try to move forward. I appreciate everyone's time and help!
Thanks so much,
Jason
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Thu Oct 9th, 2008 16:42 |
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Jason,
As you know, vitamin D is a potent steroid hormone that suppresses your immune system. When you suddenly drop your D levels, your whole hormone system is thrown out of balance, and your immune system struggles to get back on track. The result is something like sitting in the middle of a battlefield, until you start the protective blockade of Benicar.
If the canons are blazing too fiercely around you, try re-introducing a very little vit D, or allowing yourself a little more light, just until you start the MP....
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Thu Oct 9th, 2008 16:58 |
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Thanks, Julia!
I take it then that I'm simply experiencing increased immunopathology due to activate immune system (possibly)? I suppose I'm still a little confused b/c everything I read mentions that shingles outbreak is an indication that the immune is not able to handle the viral load effectively, which would indicate to me that my immune is struggling more.
I should probably just stop asking questions like this and just wait for my vitamin D results.
Thanks,
Jason
Last edited on Thu Oct 9th, 2008 19:34 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Jayppers
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Posted: Sat Oct 11th, 2008 17:09 |
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To the advocates: Just noting some observations that are of interest to me here. No questions here. Please let me know if this is not acceptable in this forum. Thank-you!
Eye inflammation, vision, and bacteria
http://bacteriality.com/2007/11/13/eyes/
"Patients infected with L-form bacteria often have inflamed blood vessels in the eye."
"Normally, the conjunctiva, a membrane that covers the white part of the eye, is clear and white. Visibly red veins of the eye are a sign of vasculitis – a condition in which the veins of the eye become inflamed. This condition is common in patients with Th1 disease, especially if Bartonella is involved,” says physician Dr. Greg Blaney. “Because it is in the eye, it is very obvious and disconcerting.”
This is definitely me. My conjunctiva and inner eyelids are almost always red with inflammed blood vessels. The connection seems to continue to mount. I always look at others who have crystal clear white eyes in envy, because I've always thought that it was an outward expression of their inner health.
http://www.brianpeskin.com/efa-analysis.pdf
Analysis of the western diet shows a significant preponderance of omega-6 compared to omega-3 — most people’s diets consist of foods that contain approximately twelve times more omega-6 than omega-3. Physicians and nutritionists tell us that we are therefore “overdosed” on omega-6 from our food, while under supplied with omega-3. This is why they say that we need to supplement with mostly omega-3 PEOs and few if any omega-6 PEOs. But there are crucial mistakes in this line of thinking. The truth is that we are now actually overdosing on Omega-3, and this is
a mistake that can make you more susceptible to illness.
The following article shows how omega-3 derivatives in the dosages often recommended by physicians and nutritionists, in particular from fish oil, will significantly decrease your immune system response to infection. This information comes from the proceedings of the International Society for the Study of Fatty Acids and Lipids (ISSFAL) the 4th Congress, June 9, 2000, in Tsukuba, Japan.
Prepare to be shocked!
“… [S]tudies indicate that at the levels used, fish oil [largely omega-3 derivatives] decreases a wide range of immune cell responses such as natural killer cell and cytotoxic T lymphocyte activities, lymphocyte proliferation and production of IL-2 and IFN-y (1,2)
“… Recent studies have indicated that relatively low levels of the long chain omega-3 fatty acids (EPA or DHA at a level of 4.4% of total fatty acids or 1.7% of dietary energy) are sufficient to bring about some of the suppressive effects, that dietary EPA and DHA both inhibit lymphocyte proliferation, and that dietary EPA but
not DHA inhibits natural killer cell activity.”
The report is titled “Omega-3 Polyunsaturated Fatty Acids, Inflammation and Immunity,” by Philip C. Calder, Institute of Human Nutrition, University of Southampton, Bassett Crescent East, Southampton, UK.
Parent Essential Oil Supplement Analysis
These articles reveal that only a relatively small quantity of omega-3 derivatives can trigger these immune problems. This is an immediate danger to the public, given the strong promotion and sale of fish oil capsules (which are mainly omega-3 derivative-based). If you consume fish oil supplements, then you will be taking a quantity of omega-3 derivatives that is significantly in excess of the immune-suppressing threshold amount given in the article above. We therefore do not recommend taking omega-3 derivatives from a supplement. You may eat all the fish you desire, but supplement using the following guidelines...
Thanks,
Jason
Last edited on Sat Oct 11th, 2008 17:47 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Chris
Advocate
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Posted: Sun Oct 12th, 2008 05:17 |
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Jason,
The key phrase is "in particular from fish oil", which means a lot of vitamin-D, which means these folks haven't really figured out the biochemical pathways to know what they are talking about. They are seeing the effects of vitamin-D without realizing it.
There is a note here Food tips - omega 3 fatty acids, that has the MP position on the issue.
You get to eat fats, and fatty acids, but not those with Vitamin D. And you should avoid anything that modulates the immune system, as it's tricky enough just using the MP medications to keep the immune system working in that tolerable sweet spot with out adding other supplements in.
Please check the MP site on such things, there really is a wealth of info there. It's easy to get sidetracked by the stories on supplements like the omega fatty acids. It's best to ignore them, as the science behind them is just not up to the MP standards. Such subjects tend to take the focus off folks trying to understand the MP itself.
Chis
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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