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leannemaready
Member
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Posted: Thu Apr 24th, 2008 14:37 |
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Does anyone know how regular TB and the paratuberculosis that causes Crohn's are related? I read on the site that TB takes 5 years to get rid of. Wondering if it is the same as the paratuberculosis? Is it as dangerous?
LeAnne in NC
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Thu Apr 24th, 2008 23:04 |
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Leanne,
I've merged your new question with your own thread for continuity. Please ask all your pre-MP questions here. Thanks.
Your Th1 illness is systemic - that means it can affect any organ in your body. The liver, the gut, the lining of the brain... anywhere. It can also affect your thinking, giving you the 'brain fog' most of us are so familiar with, and causing excessive levels of anxiety for some.
All Th1 illness is dangerous. And the more bacteria you have, the longer it's likely to take to get rid of them. I'm four years into the MP, and the things that sent me to the doctor five years ago have gone, but I keep going on the MP because other conditions are going away, that I didn't know were anything to do with my sarcoidosis 
Crohn's Disease - you will see here that paratuberculosis is a 'distant relative' of TB. But it's highly unlikely that anyone with Th1 symptoms has only one type of bacteria - we all gather a mix of them. The MP enables your immune system to tackle the lot 
The MP does take a long time, especially for those who were really ill. But most of us got our lives back long before every last bug was killed.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Fri Apr 25th, 2008 02:29 |
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Wow,.....wow. That set of articles is so informative. About the whole demyelination stuff. Can that be repaired with the MP? Or is it once its gone, its gone? Either way, I want to jump on the MP ASAP to save what I've got. As I have said, my bowels have gone the other direction to now where my muscles aren't really working anymore. I wonder if when my immune system wakes up if I'll have diarrhea like crazy..... like for the next five years?
I am terrified to take that first Benicar, as I have been watching Bryan Rosner's video blogs on I think lymebook.org. He is THE Lyme trailblazer and has written three books and highly recommends the MP. He said that when he took the first dose of Benicar, he was really freaked out and basically in really bad shape for two weeks...quit, and didn't revisit it for a long time. But it seems he just took the first dose (for his first try) instead of taking more Benicar. I am scared of what my immune system will wake up to (TB, Lyme, coinfections?.....who knows what else). Just by chance I noticed that a doctor had ordered a metabolic panel last March that included D-metabolites. So over a year ago, my 1,25 D level was 74. Yikes. Lord only knows what it is now since I spent all last summer at the pool and beach. Does this mean I will have one heck of a herx when I start?
I want to thank you again for your replies. They are so comforting, and you are so positive and encouraging. Thanks for taking the time to help to ease all my anxieties. In the meanwhile, I am ordering the Noirs, black out curtains, and still looking for a doctor who is game.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Fri Apr 25th, 2008 11:18 |
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LeAnne,
Benicar will rapidly reduce that high 1,25-D. There is no way of knowing what level of herx you'll get, but remember, you can always adjust the meds to make it more tolerable. Keep in close touch with the medical moderators by posting regularly in your Progress Report, and they'll advise you.
When assessing other websites/books' information about Lyme, ask yourself whether it's based on serious medical research. Rosner recommends not only the MP, but other treatments, indicating that he has failed to understand the breakthrough significance of Dr Marshall's molecular discoveries. (He was, by the way, never a member of the MP trial, but considers himself to have 'done the MP' without the guidance of the only experts, the MP moderators  )
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Fri Apr 25th, 2008 14:20 |
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Hi Julia,
1.) Is there any evidence (symptom wise) from anyone whose myelin has repaired itself?
2.) Do you think the Benicar would protect my intestines. Will they be more or less inflamed? I know I will be killing off bacteria, and will have lots of diarrhea, but will my intestines have more ulceration? That scares me, as they perforated 9 years ago.
P.S.- Interesting about Bryan Rosner.
Thank you,
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Fri May 2nd, 2008 14:09 |
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Does anyone know Trevor's opinion of leaky gut?
Also, will the MP take care of parasites? Should I do a preliminary dose of Mepron before starting the MP if parasites are suspected?
How does the MP work with Red blood cells?
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Fri May 2nd, 2008 16:23 |
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LeAnne,
Quite a few of our members have reported leaky gut as one of their disease symptoms. There is no reason why it shouldn't resolve along with everything else
Your immune system will be able to deal with parasites when you enable it by doing the MP. See Will the Marshall Protocol treat co-infections?
Your empowered immune system will also deal with pathogens wherever they are, including red blood cells. Is that what you mean?
It would be helpful to the advocates if you could do a search on the main site to see if your question has already been answered. Using Google tends to be more efficient than the site search engine. For example, you would put in "leaky gut" site:marshallprotocol.com (the spacing is important), or use Google's 'search this site only' feature.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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leannemaready
Member
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Posted: Tue May 6th, 2008 03:30 |
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Thank you Julia for answering my questions. Sorry I have so many! You are so nice!
I'm trying another doctor Wed. I have a lot of info printed, phase 1, simple explainations, the DVD, etc. He has said in the past he likes to get all his patients off immunosuppressive drugs, so I'm taking that as encouragement that he might consider the MP. Wish me luck!
P.S.- My inlaws are vacationing in Belfast right now. : )
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Wed May 14th, 2008 01:42 |
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Still scared to start...here's why. Can someone break down step by step what may physically take place in this instance? Trevor, do you have time to answer this one?
Will all past infection eventually rear its ugly head? (I've been reading about root canals and abcessed teeth).
I had peritonitis (infection iin ENTIRE abdominal cavity from a perforated bowel) in 1999 and Crohn's since 1993.
I think Lyme (since 2005) has shut down my GI tract and is masking infection or has my immune response so compromised that my GI isn't even able to produce inflammation anymore, as SED rates are low, and there is NO sign of active Crohn's at all. Could it POSSIBLY be that the holistic approach I took three years ago with probiotics and antibiotics and HCl did anything to actually take care of the Crohn's, or is it most likely to come back in a rage when my immune system wakes up. I am scared that when I take the Benicar, it will send me straight to the ER again for emergency surgery for peritonitis.
Seeing as Crohn's and peritonitis are both L-form, Please give me a best guess as to what my body will do so I can be prepared.
Can I stay on Mesalamine during the MP?
I REALLY want to do the MP, and honestly think it is my only hope, but in this situation, it almost seems like suicide. I'm terrified.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Wed May 14th, 2008 02:19 |
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LeAnne,
Fears of the unknown are one thing, and some of the emotional trauma of the disease itself can inflate concerns out of proportion.
Better to replace fear with facts:
Immunopathology Tutorial
How to Identify immunopathology When in doubt. Read about it first!
There's the flip side of time you might consider. If one has "abc" happening that was not very pleasant, waiting around for the disease to progress will certainly prolong the things you don't like in the first place, and other things break down over time if not fixed.
Best to you LeAnne--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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leannemaready
Member
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Posted: Wed May 14th, 2008 02:29 |
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Hi Janet,
I completely admit to being more fearful than I should be, as I always have an overwhelming fear that I am going to die...part of the disease apparently. I won't miss that symptom when its gone!
However, I am just trying to grasp physically what will take place. I think I've asked this before and still don't get it.... I know the Benicar protects organs, etc., from the cytokine cascade, but if there is MORE inflammation with immunopathology, will my intestines be MORE inflamed, or protected?
I am sorry my brain isn't working better. It's frustrating. I know.
Also, when I post new questions on my discussion line, should I hit reply, or new topic. I see it starts in one place, and then Aussie Barb adds it to my question line.
Moderator Note: yes, please hit reply when posting your questions.
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Wed May 14th, 2008 02:31 |
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Also, I take Mesalamine.
I don't see it on the medications to avoid list.
Can I still take it on the MP? It is not a systemic steroid.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Wed May 14th, 2008 05:47 |
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LeAnne,
Personal experience: whatever I had in the disease state was an indicator of where my body was trying to get well. I found that the process of getting well was very similar to the disease aches/pains/etc, except that I actually got well over time and they eventually went away.
You may appreciate:
What degree of healing is possible using the Marshall Protocol?
Per Mesalamine or any other medication not on the list of medications to avoid (which is not a comprehensive list), use is a determination made by a member's medical team. If a drug is not on the list of medications to avoid, then members and their Doctors who participate in the Private Section for Health Professionals can dialog with medical moderators to make a determination.
Anti-inflammatory medications are not always steriods. Also, some common OTC medications like aspirin are typically not advised during the MP. But like I said, determinations about any regularly ingested medication is made by medical people when someone actually is on the MP.
Best to you LeAnne--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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leannemaready
Member
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Posted: Sun May 18th, 2008 02:04 |
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Hi,
My doctor has approved the MP, got labs drawn yesterday, will start soon. But until then.... I have had intermittent burning in my spine, but much worse yesterday and today, especially in my neck. I have been reading that paresthesia is common in Th1.
It feels VERY inflamed, and a little stiff, although I can move it OK. My neck muscles feel weak, hard to hold my head up.
At what point should I worry about meningitis (Lyme)?
Will the MP be effective for if that is what is going on?
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Sun May 18th, 2008 03:42 |
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Aussie Barb replied to a similar question about Meningitis on the study site:
I will post links to some Information for you.
why: see FAQ I thought I had a genetic defect. What is successive infection?
Dr. Marshall has spent years researching Th1 inflammation and developing an accurate pathogenisis which he has described in exquisite detail. Our large cohort of recovered, improving and responding patients verifies the efficacy of the protocol that the research team has developed to eliminate the underlying cause which is intracellular bacteria.
Our expertise involves helping people understand how their symptoms are related to Th1 inflammation and how to resolve that inflammation with the Marshall Protocol. see Understanding scientific studies
What to expect: The ARB (Benicar) and the antibiotics make the symptoms evident in the HERXHEIMER REACTION. << you may wish to share this Information with your Dr.
Dr Marshall says: "All of the symptoms are caused by the disease. .... Your organs will be weak, that is caused by the inflammatory disease. Keep reading and you will be able to isolate the symptoms and understand them more fully as part of the recovery process.
If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage."
The aim: or the key is to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines.
Phase One is the training ground for getting the feel of the herx /symptoms and gaining personal experience in managing all aspects of MP. ie eg including your meds, and light exposure and D avoidance. Tools to check: << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
I'm eager to get well. How can I speed up my progress on the MP?
Doing a net search: for the words Lyme, meningitis, meninges, Lida Mattman/ book will take you to lots of Information and a possibility of being able to get hold of Lida's book somehow..
This is some of our Information: LYME/BORRELIOSIS re Definition, symptoms, transmission, testing, treatment
Should I treat my co-infection before I start the Marshall Protocol?
Late stage Borrelia with co-infections: Success
CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL
The Marshall Protocol, Th1 and D and Dr Marshall's Karolinska Poster PDF
The Karolinska poster fits nicely in the other shoe that must drop, especially the focus on Koch's 1890 postulate that now even the CDC is starting to wonder about with chronic disease.
Remember to look to the study site for required reading, but also to see discussions of similar topics. Consider posts by others on the study site to be required reading too.
Best to you Leanne--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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leannemaready
Member
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Posted: Sun May 18th, 2008 13:07 |
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Hi Janet,
Thank you for that info. I had already read it but didn't quite get a difinitive answer I was looking for.
One more question.... I know that Lyme obviously has spirochetes, cysts, and CWD forms. Apparently, its the spirochetes that love myelin, which is what I feel is very inflamed in my spine right now. I know the MP will EVENTUALLY get to all infections, coinfections, viruses, etc., But is there any chance my immune system will get at any of these spirochetes any time in the beginning? Or only well after the CWD has been targeted.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Sun May 18th, 2008 20:05 |
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LeAnne,
Spirochetes are not the big problem, even if they have been found around Myelin. Co-Infections or co-factors are simply subcategory issues, even though they have been effective at distracting top trained medical providers for generations.
If you want to see just where co-infections exist in the cycle of disease, then please look at Meg Mangin's 2008DMM Karolinska poster handout, page 1, lower left corner. Use the magnifying glass tool in the Acrobat browser window to draw a box around the circle and read the details close up. Please notice co-infections/co-factors seem to require the L-form infection first before they can do their damage.
Fortunately, the opportunity for ideal, true health is on the horizon, but if you use your time to look back instead of at the significance of the science, and wondering if the voices from the past have your interest better served, you will have to work in that domain and will not be able to take advantage of the Marshall Protocol.
Recognizing the top-level Th1 chronic inflammatory disease parent problem is the biggest hurdle everyone has to jump because opportunistic co-factors/co-infections overlayed into biofilm environments can be pretty painful and often intense... and very distracting.
Please take the time to study and ask questions specific to the Marshall Pathogenesis details in the required reading. Once you understand the Pathogenesis and what is causing the top level parent problem, then you can make a better determination for your health and sort through all the many "voices" that are calling out options to you.
Please listen to those who have been through the Th1 decision tree and have lived the MP results. Study the required reading so you can present well thought-out questions here, and converse rationally with your medical team so you can get well. Then make up your own mind one way or the other. Wavering goes nowhere.
As you have had labs drawn, DO remind your doctor to become an active member of the Private Section for Health Professionals.
Best to you LeAnne--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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leannemaready
Member
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Posted: Mon May 19th, 2008 13:50 |
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Janet,
You are one AMAZING person. Thank you so much for your guidance. My mind is definitely made up.....I am just constantly tormented by the "what if's." It's like some protective mechanism in case the MP doesn't work. But like you say, that will get me no where. I am making my mind up to focus on how the MP WILL restore my health and my life.
Thank you Janet,
LeAnne
P.S. -Great Poster
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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leannemaready
Member
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Posted: Tue May 20th, 2008 02:22 |
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Hi Janet,
I saw they were closing the site to new members...this doesn't affect me does it? I'm about to dive wholeheartedly into the MP and was really counting on the support net to help me through it. Can you tell if I'm an official member of the study "cohort" or just a member of the supportive site? I obviously have registered, but my D levels haven't been entered in yet...this week hopefully. My doctor has approved, and will see him this week for lab results and consultation.
LeAnne
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Crohn's, Lyme/etc., Anxiety, Fatigue, Cognitive, CNS, neuropathy, heart palpitations, shortness of breath, gallbladder, "GI Palsy," ADD,(August08: 25D:31 1,25D:71)
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Julia
Advocate (on leave)
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Posted: Tue May 20th, 2008 14:27 |
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LeAnne,
Only those who have previously started posting a Progress Report in the Benicar Forum are automatically members of the trial. Please send an email to tmmangin@charter.net with 'MP application' in the subject line.
Julia
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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