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Aunt Diana
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| Joined: | Fri Oct 26th, 2007 |
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Posted: Fri May 30th, 2008 05:02 |
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Kainer,
I'm sure you understand that many of us on the MP had to search long and hard for a doctor who would support us on this new therapy. I, for one, spent twenty years searching for an open minded doctor. (Before the MP, I had a hard time finding a doctor who believed that Lyme disease could persist after the two week antibiotic regimen that they so adamantly claim is all that is necessary). WRONG!!
Be prepared to keep up your search...and don't settle for less than a doctor who is willing to learn something new.
You are embarking on a true adventure and at times it is not easy. You need a supportive doc and may need to travel to find one.
Once that has been accomplished the rest will be exactly as this and the study site tell you....so read it every day. There have been times that having read others experiences has helped me to survive difficult periods....knowledge is power. And the knowledge is on this and the study site.
Follow it and you will heal yourself. Good luck. And God Bless this arena and all that help make it happen.
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| ABC of MP| MP Stories| Bacteriality|
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Kainer
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| Joined: | Sat Jan 26th, 2008 |
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Posted: Wed Jun 4th, 2008 17:37 |
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Good news!
I now have a doctor who is willing to assist me with the MP. I have the scripts for the Benicar and have already placed the order. It's a one-year prescription and I amm ordering 3 months at a time. I am going around my prescription insurer, which won't cover the Benicar beyond 40mg daily, and using mail order. I also have the scripts for the mino. The prerequisite blood work has been drawn and I am awating the results.
More to come...
Thanks.
JGK
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Kainer
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Posted: Tue Jun 24th, 2008 15:27 |
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MSNBC.com had this article about low vitatim D levels associated with higher mortality rates, especially due to cardiac problems. The article does not mention 1,25D or 25D, just vitamin D. But it does mention vitamin D's role in immune regulation. Perhaps the rest of the medical world is catching on... Of course the cynic in me realizes that some will infer from this that taking more vitamin D will be healthier. Here is a snippet from the article:
The study's lead author, Dr. Harald Dobnig of the Medical University of Graz in Austria, said the results don't prove that low levels of vitamin D are harmful "but the evidence is just becoming overwhelming at this point."
Scientists used to think that the only role of vitamin D was to prevent rickets and strengthen bones, Dobnig said.
"Now we are beginning to realize that there is much more into it," he said
Exactly how low vitamin D levels might contribute to heart problems and deaths from other illnesses is uncertain, although it is has been shown to help regulate the body's disease-fighting immune system, he said.
http://www.msnbc.msn.com/id/25334302/
JGK
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Tue Jun 24th, 2008 23:07 |
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Kainer,
You are correct. The number of medical-related articles coming out about D is astounding, but the inept conclusion to supplement D is based on an incomplete comprehension of the VDR metabolism and bacterial pathogenesis.
Speculation and discussion wastes valuable time, and lives are put at risk.
I suggest every article you read that has an incomplete description of the D metabolism and pathogenesis of disease that is clarified by Dr Marshall's work be followed with a letter -- with accurate references -- to the author and the editor that describes how dangerous it is to report conclusions from incomplete research that has no molecular genomic insights, and point to harm the public is being done by their publication.
It is not enough to post endless D rubbish as it is churned out in the popular press. Action is required.
Best to you Kainer--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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Kainer
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| Joined: | Sat Jan 26th, 2008 |
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Posted: Tue Sep 23rd, 2008 19:10 |
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All -
I have experienced something of a set back and I would like to get some advice.
Inflammation has returned to my right eye in a new location. Circulation is comprimised (white or cotton-wool spots on the retina) and there is a new gray spot in my vision. For over 6 months now there has been no inflammation (inflammation from a year ago did permanent damage to my retina, which is how my sarcoidosis diagnosis came about.)
My ophthalmologist wants me back on the prednisone 60mg daily, then to taper later. Hopefully a short course. He feels the best way to handle the sudden return of the inflammation is to hit hard and quickly before any lasting damage is done.
I have jusmade it to the end of Phase I (and I am awaiting acceptance into Phase II). I am at 100mg Mino q48hrs and the benicar is at 160mg daily since I first noticed the spot over the weekend. I am increasing the dosage of the Benicar to 40mg q4hrs, but I fear this will not be enough to push back the inflammation in the eye without some help from the prednisone. I also take the appropriate precautions regarding eye protection.
I have been progressing well otherwise, including releif of symptoms in other places. But this turn about has me upset. Any input is useful.
Thanks.
JGK
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Tue Sep 23rd, 2008 19:43 |
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JGK,
You might encourage a family member to read these for you, if your eyes are in trouble right now.
A little rule of thumb about your responses:
They will look remarkably like your disease much of the time.
Another little rule of thumb:
Doctors, including opthamologists, who have no idea about immunopathology will want to assume status quo action sets about responses.
Knowing that, you might better determine a course that includes MP recommended action for your responses rather than knee jerk into status quo actions. Careful consideration for your situation and where you are at in the MP is important, too, as the threshold of phase 2, where you are at, is frought with confusion and potential for problem if not handled with a steady hand.
Will the immunopathology cause increased eye inflammation? If you are concerned please check with your Opthalmologist and discuss the MP and how you expect that response to happen. It is important to visit a health-professional when you need advice about your eyes, and important to take into consideration the MP at that time.
Here are my recommendations, if I was doing the MP and was not part of the study cohort and had your situation present itself to me:
1. I'd get ahold of the doctor that prescribes and monitors my MP status and grab his or her attention, while I request, politely but firmly as possible, that their presence on the Private Section for Health Professionals would be greatly appreciated and that they need to be very careful to help you most at this fragile point in the journey.
2. If not a member of the study site, your doctor must provide you with the Ph2 guidelines, and discuss them intelligently with you, and you must go over what you have learned about yourself during phase 1.
3. You must understand that your responses can be quite profound right now and for the next couple of months... or longer, so you might need a little more assistance with some of the MP medications, and maybe some other MP-OK helps (see links below).
4. You can make doubly sure your eyes are massivly protected at this time. Light is your eye's worst enemy, and wearing the darkest NoIRs indoors in low lux might be something to consider. Possibly even a mask at night, and double NoIRs if you must go out. Discuss with your doctor how extra Benicar is identified as the first line of action for profound responses, as is learning to slow down your responses with other MP medication adjustments too. Maybe you explored some "more" and "less" options with the antibiotic during phase 1, maybe you even charted your responses enough to feel quite confident in the patterns that emerged with your exploration in ph1.
Languishing a long time in Ph1 is not a great idea, so helping your doctor help you is important at this time. The business meetings you have with your doctor(s) must be professional, with expedient use of time. Plan accordingly and come prepared.
Here are some links that may be of value to you as you prepare to speak with your doctor:
AVOIDING SUNLIGHT and BRIGHT LIGHTS
How and why to protect skin and eyes while on the MP
EYE INFLAMMATION and Th1 diseases << Adequate eye protection will be particularly important for anyone with eye inflammation.
Eye exams
Uveitis
Renin-Angiotensin System and the Eye
Members discuss their eye problems
Studies and scientific papers Eyes
Relieving eye symptoms
Optical phenomena
Eye medications
Eye exams
Again, you might encourage a family member to read these for you, if your eyes are in trouble right now.
Best to you Kainer--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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Kainer
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Posted: Sun Sep 28th, 2008 23:10 |
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I am back on prednisone. I don't like it, but I feel I have no choice at this time.
As I mentioned above, inflammation returned on the retina in my right eye causing reduced blood flow and in turn further damage to my vision in that eye. The inflammation came on suddenly and did it's damage before I could even respond. The fear is of swelling spreading a ruining more of my right retina. My ophthalmologist ordered 60mg prednisone to contol the swelling. I should note that I increased my benicar and changed my mino dosing without much impact on the swelling.
Since starting on the prednisone beginning this week, I have felt the worst I have ever felt. I have experienced two panic attacks (one which sent me to the ER on Wendesday and another on Saturday) The area around my stomach is the area of worst pain and discomfort, which then radiates up behind he sternum. It's scary and increases my anxiety.
I want to be off the prednisone soon as possible and my ophthamal will hopefully give an all clear when I see him on Thursday. He is, incedentally, not hip to the MP although he knows I am on it. I will not expect him to read up on MP materials.
I know that the prednisone puts down the immune system and reduces the effectiveness of the MP. Mino, however, is bacterostatic, so hopefully the pathogens will not spread, just remain in a weaked state. When I come off the prednisone - again, hopefully really soon - will I expect a surge in herxing? Is it possible that my current worsening of overall feeling could also be a surge in herxing? What I mean is, if the inflammation drops before the phagocytes are inactivated, would they now have nearly unhindered access to infected tissue and the weaked L-forms within?
Thanks.
JGK
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Julia
Advocate (on leave)
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Posted: Mon Sep 29th, 2008 00:21 |
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Kainer, eyes are important. Sometimes a brief burst of steroids is necessary to save sight.
Please see Weaning from steroids, which says mino should be discontinued while you're on steroids. A medical moderator said to someone else in a similar situation that you need to wean gradually, even if you've only been on steroids short-term.
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Always consult a physician
Essential Info; FAQ; Julia's story
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Kainer
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Posted: Mon Sep 29th, 2008 00:36 |
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Julia -
Thanks. I was looking were you directed and I'll need a little clarity. It states:
Discontine antibiotics
If you are already taking minocycline or any other antibiotic, you must stop taking it at least 4 days (10 days for Zithromax) before you start taking Benicar. Taking antibiotics may cause immune system reactions that result in intolerable or even dangerous symptoms.
It indicates the stopping for the benicar, but not prednisone. If I remain on the mino, what am I setting myself up for? Are my current severe experience this past week the result of combining mino, benicar and prednisone?
Thanks.
JGK
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
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Posted: Mon Sep 29th, 2008 00:54 |
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Kainer
Taking the antibiotics as recommended to achieve immunopathology will add to your woes when trying to wean the prednisone. Check all this Information with your Dr:
for explanation, see Information in
Why do we take minocycline only every other day? Why do I feel worse on the second day?
so this may be more helpful to you. Why and when do you recommend taking Minocycline frequently?
If symptoms approach intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (natural light exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms become intolerable is to take an extra 40mg Benicar immediately. Chew the tablet and place it under your tongue for faster absorption and relief. See See How to make Benicar act faster
If intolerable symptom/s persist, increase Benicar to every fours hours around the clock until symptoms are tolerable.
all best, Barb ...
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Kainer
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Posted: Mon Sep 29th, 2008 01:23 |
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Thanks for answering. That was my thinking too.
One other, unrelated question: Are there any thoughts on with melatonin supplements?
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Rico
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| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 110 |
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Posted: Mon Sep 29th, 2008 02:02 |
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Medications To Avoid on the Marshall Protocol
Melatonin
Why do I have to stop my alternative treatment and avoid most supplements?
Last edited on Mon Sep 29th, 2008 02:03 by Rico
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