 |
| Author | Post |
|---|
Ozone Ranger
Member
|
Posted: Tue Aug 26th, 2008 05:44 |
|
I am very new to this forum, and it is my wife of 35 years that has been ill for 11 years now, with chronic Lyme disease. She is presently farr too ill to do this on her own, so I am acting as her advocate. We are in a rural area of north eastern Pennsylvania, and I am trying to locate an "MP aware" doctor, with dismal results so far. My question is: Are ther any "hints" or advice available that might help me find a doctor to help us with implementing this?
Thank you for the opportunity to access such a valuable resource, Geoffrey, on behalf of Kathie Ayers
From Drs Request Thread:
Carole: Thank you very much for sending the Doctor List so quickly. I have been studying the Marshall Protocol for almost 2 years, from a different perspective. Our middle son has credentials in Bio Chem / Microbiology with post graduate work in Immunology, and has been in corespondance with Dr. Marshall regarding ARBII drug function etc. and I have learned a great deal as a result of those encounters. I regret that I am new to this particular forum, and unfamiliar with the navagation and rules. You have been more help that you know, I will be as unobtrusive as possible, (and maybe even somewhat helpful) once I learn the forum's propper ettiquite.
Geoffrey
|
Julia
Advocate (on leave)
|
Posted: Tue Aug 26th, 2008 09:31 |
|
Hi Geoffrey,
Please post a doctor request in the forum REQUEST FOR DOCTORS LIST
Here are some introductory links about the Marshall Protocol, in case you haven't found them yet. If your wife is unable to sit at the computer, it might help to print them out for her 
"What is the Marshall Protocol?"
Simple Explanations
Post Treatment Lyme Disease Syndrome - Definition, symptoms, transmission, testing, treatment, MP Member experiences.
Papers for Physicians
D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
Please ask any further questions here at your own personal thread.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Ozone Ranger
Member
|
Posted: Fri Sep 5th, 2008 01:15 |
|
I have received a list, and I thank you for sending it, however, after calling most of the doctors listed, most were unaware of the MP, and I do not know who I should direct the details to so the list can be corrected. Any help would be welcome.
We did finally locate a doctor 2 states away who has some experience and has agreed to begin treating my wife. For that we are very thankful.
Geoffrey Ayers
|
Julia
Advocate (on leave)
|
Posted: Fri Sep 5th, 2008 10:05 |
|
Geoffrey,
Please send doctor info to me in a Private Message (click on my name above my photo and select 'send a private message') and I'll forward it to admin, thanks. Glad you were successful in the end.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Ozone Ranger
Member
|
Posted: Fri Sep 19th, 2008 15:15 |
|
Although we live in Pennsylvania, with the severly limited number of doctors available, we are very lucky to have found a doctor in Manhattan, New York City. She is very knowledgable, compasionate and humble, extremely unique among medical professionals.
She will not initiate a MP discussion, but will consider working with patients that can demonstrate their own commitment and proactive position, and have already studied the MP in depth. I have learned that when approaching a doctor, it will help if you can demonstrate a firm prior knowledge of the MP, and a willingness to take on the primary role so the doctor can have some comfort level, and not be overwhelmed.
If you are looking for a doctor and Manhattan NY is within reach, AND you have a strong understanding of the MP, and the mechanisms to communicate (fax/email/etc) send me a private message. She was also willing to work with us in a "long distance" mode limiting the 400 mile round trips into Manhattan.
She is NOT actively seeking patients. She keeps her practice limited to a "sane" number of patients, and will only consider those that have honestly and thoroughly studied the protocol on their own, and can demonstrate this. We are extremely fortunate to have found her, and we want to share this with others without compromising our own relationship with this truly unique doctor.
Geoffrey on behalf of Kathie Ayers.
|
Ozone Ranger
Member
|
Posted: Wed Sep 24th, 2008 03:54 |
|
| We do have the right kind of Benicar, after the first week, she is experiencing symptoms she hasn't had in quite some time. We had hoped for an improved result, but we are getting the oposite. That's nothing new for us, it always seems to tak the least agreeable path, no matter what it is.. At least we are finally on the right track, and paying very careful attention to all of the litterature on these web sites is critical to a sucessful outcome.
|
JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Wed Sep 24th, 2008 03:57 |
|
Geoffrey,
Everyone chooses the MP so they can get some symptom relief, and we all hope it will be sooner as opposed to later, but the real truth of the matter is that the bacteria and the cells they have invaded must die and cytokene storms from an immune system enabled must be expected.
The bugs gotta die and that usually involves varied degrees of immunopathologic response.
The bad news is that not everyone feels better right away. The good news is that you can feel better about feeling worse now, because she will feel better later... and not only feel better, but be better.
The Ideal to be striving for - Immunopathology and its management will vary depending on many individual factors. Management of immunopathology is learned through personal experience. Each member takes responsibility for learning about, assessing and reporting their symptoms regularly.
Best to pace rationally, as this is a marathon, not a sprint. No point in trying to hurry up what cannot hurry up. Some good links:
What degree of healing is possible using the Marshall Protocol?
Immunopathology Tutorial
Now is a good time to start charting so you and your doctor can figure out the big picture trends. Phase 1 is an excellent time to find out what patterns are typical for each individual. Make your own spreadsheet, use simple graphing paper if you wish, or download the charting sheets here, but figure a way you can easily track over a long period of time to see trends.
Once you get the idea of what happens in your unique situation, then you are better able to discuss that with your doctor for script needs and management options.
Best to you and your dear one, Geoffrey--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.
|
natalie17
Advocate
|
Posted: Wed Sep 24th, 2008 04:12 |
|
Geoffrey,
In addition to Janet's great information... if you haven't seen it already you might like to take a look at -
I just started Benicar. Why do I feel worse?
Best of luck with all - Natalie
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
|
Ozone Ranger
Member
|
Posted: Wed Sep 24th, 2008 05:12 |
|
Thanks for the encouragement. She has been sick for over 10 years now, ("Lyme disease) and in that time we have had repeated exposure to the more "conventional" antibiotic insults that lesser informed doctors are limited to. She has experienced Herxheimer reactions many hundreds of times, and it's taken all this time for us to become more aware, trying to better understand what she is experiencing. I've had little chioce but to study all ther is to study, on this and all of the related issues, surrounding the chronic TH1 disease processes, and the expected reactions to attempts at killing these pathogens. These organisms have become part of our family, and as such we needed to know them as well, or better that any other family member. Their habits and survival mechanisms are both creative and diabolical, and understanding them gives us some advantage in htis battle.
Finally we are on a treatment protocol that makes scinetific sense, and she is fully prepared to deal with whatever comes her way, since in all these years, no "Herx" has ever been as bad as the worst this disease itself has caused on it's own. This is one battle that we just can't afford to loose.
Thank you again for all the advice, and all the work you do to help victims of these incidious diseases.
Geoffrey on bahalf of Kathie Ayers.
|
Julia
Advocate (on leave)
|
Posted: Wed Sep 24th, 2008 13:11 |
|
Geoff, please pass on our best wishes to Kathie for her MP journey 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Ozone Ranger
Member
|
Posted: Thu Sep 25th, 2008 00:30 |
|
Julia, and others: My wife constantly expresses her gratitude to everyone, for all the work and help ypu have all been to us. I print alot and bring it up to her, so she can feel part of what is happening. It's not very "eco-friendly, but right now it's the only way she can read for herself. She was never a "cyber type personality", and now she is simply too ill to do all the stairs to get to & from the PC, down in the family room. A laptop would help that, but she isn't as sharp as she once was, and don't easily comprehend the navigatoin, etc. When ever I left her alone (after clear instructions) with the PC, it's only a minute before she is calling for help.. Rather that stress her out with a new task to learn, I will do everything needed to allow her ot fully benefit form the MP, as long as I can. This is sort of a team effort. After 35 years of marriage (and a few years before that) we do everything together, & split things up acording to ability. Right now it;s all on me, but "Sheain't heavy, she's my wife".. (From the Hollies song, wit some words changed).
We will beat this, I will let nothing interfere withher progress. Thanks to all of you who are there to help.
Stay well, and god bless all of you, Geoffrey OBO Kathie Ayers.
|
Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
| Status: |
Offline
|
|
Posted: Thu Sep 25th, 2008 02:01 |
|
Geoffrey,
after the first week, she is experiencing symptoms she hasn't had in quite some time.
You will see all the old symptoms come back a bit, aas the immune system wages war again in the same old places. This time, the immune system will win.
Is this the first week on benicar only? Or have you started the mino? If it's the mino, I'd expect you'd notice a two day swing in symptoms.
How To Manage Immunopathology
The link above is one you'll probably need to re-read from time to time. The bit where you increase the antibiotic to reduce the herx was always counter-intuitive.
Good luck, I don't envy you driving Interstate 80 so much.
Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
|
Ozone Ranger
Member
|
Posted: Thu Sep 25th, 2008 04:07 |
|
Thanks Chris. I read the counter intuitive part (you speak of) over and over, and I (think) I understand it. Although we have not started the mino yet, we are informed as to what to expect. The optimum dosing interval being 48 hrs, anything other than that lcompromises the eficasy of the AB, tuis mitigating the immunopathology (without loosing ground entirely by stopping it). As you say, it is oposite what one would think, showing once again how a lay persons best intensioned thoughts need to be tempered by the experience of experts.
BTW, the doctor in NY has been excellent in limiting the number to "face to face" visits we need to make, she too understands the physical and emotional drain driving into New York City from afar canexact on a person, especially one who is very ill. She is more that a blessing, she did this all without even being asked to. This is a doctor that still realizes she is a human being, peer to all other human beings. Evidetly you have found a doctor in New Jersey, I am very glad for you.
Thanks again for the reminder!
geoffrey Ayers
10 years chronic "Lyme disease" CFS, "Fibromyalgisa" IBS, neuro-impaiements,
|
Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
| Status: |
Offline
|
|
Posted: Thu Sep 25th, 2008 13:17 |
|
Geoffrey,
Don't get too fixated on the 48 hour rule. At times, going to 72 hours can give a day's respite. Maximizing the antibiotic efficacy isn't always the problem, some times it can get all too effective. At other times, a third day can mean higher herx, and a higher dose of antibiotics can make the first day the relief, as the higher dose has an early anti-inflammatory effiect. This all tends to be quite individual.
Yes, I did find a doc in NJ. However, it sounds like your doc is a lot more enthusiastic about the MP, which is a very good thing.
Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
|
Ozone Ranger
Member
|
Posted: Thu Sep 25th, 2008 22:18 |
|
Thank you Chris. From reading through the members experiences it becomes clear that patient responses are all very dynamic and highly individualized. Here is a good example of how a firm grasp of the fundamental principles of the science itself is necessary to help ride out all the "peaks & valleys" so to speak. The MP is built upon sound science, and as such, even the unexpected can be rationalized and explained with coherent logic. With that said, there's still no substitute for the advice of an experienced person who's been there already. The combination of these resources provode the best possible amunition and strategies to finally sucessfully battle these insidious little beasts (the pathogens I mean).
BTW: We had called ALL the New Jersey doctors on the list provoded, and NONE of them had even heard of the MP, so you got very lucky indeed!
Thanks again, & best of luck! Geoffrey
|
JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Thu Sep 25th, 2008 22:41 |
|
Geoff,
As Chris so aptly explained and you are capturing, the nature of immunopathology is a little varied, but once you understand the patterns you have power to control them. Glad to see you are printing things out for your wife.
You said she wasn't quite her old self in the thinking department. The good news is that you will get her back, and then some. Your patience and your diligence has a great reward there and you deserve the best that it brings. Give her the time to heal and she'll be all yours again, and you can both be quite happy about your victory. That day will come.
Best to and your dear one, Geoff--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.
|
Ozone Ranger
Member
|
Posted: Sun Oct 19th, 2008 16:47 |
|
I understand what the ACEnzyme is, and does, I wanted to get some opinions on, or previous experience with this kind of observation:
With no sarc. symptoms or indications (ever), my wife's initial (pre-MP) blood work shows a high (96) ACE level, something we have never seen before. She had been dx'd with Lyme via multiple PCRs 5 years ago. Suprisingly, her vitamin D metabolite ratios were normal (no indication of Th1).
Some feel that taking an ARB (Benicar) would well be accompanied by an ACE inhibitor, since blocking the receptor allows the converting enzyme to accumulate?
Thanks for any insights..
geoff.
|
Julia
Advocate (on leave)
|
Posted: Mon Oct 20th, 2008 11:37 |
|
Geoff,
When you say Kathie's D tests were normal, could you please post the actual numbers, as I don't think we have any record of them? Help with Understanding D-metabolite tests
ACE of 96 isn't so very high (mine was 231 when I started, but I'm a sarcie). Here's what it says in What do my lab tests mean?
The serum ACE often rises to quite high levels when you have an Angiotensin Receptor Blockade in place with Benicar. This is because the inflamed tissue can't get any Angiotensin II binding at its receptors, so it puts out extra ACE to try and convert more Renin/A-1 into Angiotensin II (the Angiotensin-II level rises too). But even though all that Angiotensin II is manufactured, there are no receptors left for it to bind to, so it can do no harm. See Why has my ACE gone up since I started the MP?
>Some feel that taking an ARB (Benicar) would well be accompanied by an ACE inhibitor
Who has actually suggested this? It hasn't been necessary for any of the study members as far as I know.
How's Kathie getting on?
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
Current time is 09:50 | |
|
|
|
|
