posted
After doing some research, I am thinking of starting on the MP method of treatment. I have started with Benicar. I checked with the MP board, but would like to hear opinions here.
-------------------- LJS Posts: 12 | From Maryland | Registered: Aug 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I've only met one person that has found it to be useful, but you may have a good experience with it. For Lyme, nost people I know and LLMDs generally suggest that it has disappointed.
Whatever works. If you find it useful, that is excellent!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I talked to numerous poeple on MP in the past. Some of them had improved temporarily but at present all of them are out of this line of treatment - the results were too disapointing. Still, you may be one who prove otherwise.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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bettyg
Unregistered
posted
I suggest you do a SEARCH on this by going to the top under NEW POST.
type in Marshall Protocol in MEDICAL TOPIC ONLY ANY DATE...make sure you change MY PROFILE to any date vs. the 30-60 days it defaults too ok!
leave membership blank; you will get a lot of comments from members; hope that gives you more input from this board.
Good luck no matter what you do. Knowledge is power. Bettyg
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posted
Hi, I've not posted for a while. I just wanted to let people know about the research I committed to before doing the Marshall Protocol, which I've been on for 5 weeks now. Here's the skinny:
- The protocol appears to have evolved over the past 2 years, with changes being made to make it ``easier'' for patients of all different conditions. Perhaps the ones that ``dropped out'' could not hack the herxing. - I talked to appr. 10 patients before starting (telephone), most of them Lymies. They have all done quite well in terms of improvement. - I've seen dramatic changes in my immune system (I've posted them under Cold Feet on the MP site) and I am convinced that this is the most effective treatment for my condition. - This protocol is not for wimps. For people that are ill (or quite diseased without recognizing the insidiousness of pathogens) it will require a long-term commitment. However, what one can learn about their body may be beneficial for the remainder of their lives.
There is much to know, learn and share about this unusual protocol. If you want more insights, simply email or PM me. Good luck to all of us on this journey for wellness!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Cold Feet, you write 'Hi, I’ve not posted for a while' Note that your total number of posts on this board is 3 (THREE). That is not a very impresive history. Yet, you sound like an old-timer.
Aren't you trying to trick more people into MP?
[ 28. November 2006, 12:58 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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quote:Originally posted by Areneli: Cold Feet, you write 'Hi, I’ve not posted for a while' Note that your total number of posts on this board is 3 (THREE). That is not a very impresive history. Yet, you sound like an old-timer.
Are you trying it trick more people into MP?
If you search with Cold Feet's member number, the last post was in September. I think CF is just trying to say that they've not posted here lately, not trying to do something troll-ish.
It is up to an individual to research a particular protocol and decide for themselves what course to take. They can't be tricked into it.
CF mentions posts that he/she has made on the Marshall Protocol board so if someons wants to, they can look up information over there as well.
I think CF is on the up and up here and is just trying to add to the discussion. I know things have been dicey here lately, but we can't be suspicious of everyone who hasn't been here daily for months on end.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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Let me know if I can ever be of any support to you personally while you progress through the MP. I was one of the earliest MP adopters from the Lyme community. (My e-mail addy is available in my profile at the MP website. I prefer e-mails to PMs. For that reason, I have disabled my PM function.)
Thanks for sharing; the MP is the protocol I credit for allowing me to leave Lyme and co-infections behind. The MP healing can be slow, but it is more real and lasting than anything I have ever done before and it's been equally effective for my bacterial, viral and parasitic (Babesia) co-infections.
Prior to the MP, I was among the sickest of the sick Lymies. At one point I was even forced to move back home with my parents so they could take care of me. They even had to help me bathe. As a result of progress with the MP, I am now running 2-4 miles a day and I am fully functional. My life is over flowing with health and happiness that I had almost given up on ever finding. I even met and married the love of my life. (He also credits the MP with his own Lyme recovery.) I'm finally able to enjoy health and wellness. For that I will be forever grateful. Feel free to contact me if I can be of help to you. Posts: 487 | From USA | Registered: Feb 2002
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posted
Wow, thanks for the all attention! This forum is great for support and I thank everyone involved.
Areneli, no, why would I want to trick anyone into doing something that is very difficult!? I'm not trying to impress anyone with posts - on the contrary....just trying to reach out and help.
Penn, thanks for correctly presupposing my intentions. You are right indeed, I just thought I'd share info regarding a treatment program I find to be an effective solution. Dunno what the ``dice & suspicion'' is all about, and not sure I do!
LoneStar, thanks, I may need your help. Like I said before, the MP is not for wimps. You are one successful non-wimp! I look forward to catching up with you down the road.
Now, let me digress and explain a bit about me. I don't usually do this kind of thing, but I'll over share. Just bear with me:
- I don't post much anymore, as whatever lucid time I have is devoted to starting a non-profit company, as well as researching the Marshall Protocol. The blunt truth is that I didn't find any proven medical solutions on any discussion board (or anywhere for that matter). I found bits and pieces via the web (PMs, emails) that I used to identify other organizations and people. E.g., I've spoken to CDC officials (very sad story) and small non-profits devoted to various remedies for CFS, Lyme, etc. The hours of Internet/phone research eventually led me to the MP.
- I own and operate a global discussion board. In my ``spare time,'' I have to maintain the rules, culture and dialogue within a complicated medical field. I appreciate the kinds of learning that takes place within online communities, that's why I put a premium on learning AND sharing. Thus, my post.
- I have nothing to hide. I am about as altruistic as one can get. If you email or PM me, I am all too happy to provide my cellular # and share as much or as little as necessary.
Areneli, any conjecture as to why the people you spoke with dropped out of the MP? Do you think the herxing (evidence of pathogen eradication) scared them off?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I don't know what they were scared off.
I was scared off by pseudoscience behind it, fanaticism of participants, and lack of effectiveness. But it is perhaps just me.
Also let me remind you all, that Marshall was kicked out from ILADS and the Dr B has declared MP as 'not working.'
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Interesting. Why was Dr Marshall ``kicked out'' of ILADs? Why would any doctor get kicked out? Alternative opinions, even descent, help build a stronger community!
I'm just curious, and still learning. I don't want to be put in a position of defending any method; God only knows the layers of knowledge one needs to defend any medical treatment. All I am saying is that I did my homework by speaking to many patients.
I am sad to hear that any doc would disapprove of any long-term, antibiotic-inclusive regime that has helped hundreds of sick people. I heard (dunno if its true) that the MP is FDA approved for sarcoidosis, one of many ``TH1 inflammatory'' conditions that can be treated.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Here is an update on LoneStarTick's success story, which I submitted (with her permission) to ProHealth and which was published last week -- with a few minor revisions, including my screen name, which is recognizable as "LoneStarMom" in the by-line.
Although there is a perfunctory disclaimer posted by ProHealth saying that the FDA has not approved the MP, that statement is somewhat misleading because Dr. Marshall was invited to make a visiting professor guest appearance at the FDA this last year, which is available on-line, and his application for orphan drug status for the treatment of PTLDS is undergoing review with the FDA currently. (PTLDS is the accepted term for chronic Lyme disease in mainstream medicine, so it is good politics to use their own terminology in such applications, even though it is very annoying to Lyme patients to be forced to call it that.)
Also, here is the link to the MP website's Success Stories by other MP members, including several other Lyme patients, as well as a variety of other diagnostic cohorts. Be sure to scroll down and click on all 10 pages of Success Stories listed there because Lonestartick's story is not the only Lyme patient's story posted. (To find each person's diagnosis, look in their signature line at the bottom of each post, but do keep in mind that many of the CFS/FM diagnoses are probably just undiagnosed Lymies-in-disguise.)
PS to Areneli -- Yes, I had heard a similar rumor about Dr. Trevor Marshall's exclusion from ILADS but I don't know any details about it. He was well received by the AAEM doctors though when he spoke at their fall conference recently. As you can see, he has developed the science behind the MP quite a bit further from two years ago when he made his earlier presentation to the ILADS conference in 2004.
posted
Tx, very encouraging and thoughtful post. Thanks for sharing.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
If the MP worked for you, then God Bless you, and I suspect you may have had undxd sarcoidosis, which is not as unusual as you might suspect.
A simple Google search will turn up many medical articles about spontaneous complete resolution of sarcoidosis and the revelation that it is not always fatal, as TM says, in fact, quite the opposite from what I found in medical literature. I guess all those studies are all wrong
This was my experience with those people and I do not trust zealotry so extreme that it must mold the facts to fit it's theory.
Many people from an FMS/CFS Forum I used to frequent before my Lyme dx were early recruits into trying the MP. I had vit. D testing done to check it out, though I could not try it due to my ABX allergy, and would not have tried it anyway, after what I saw on the MP Board.
IME, all negative posts on the MP Board are promptly deleted and nobody is allowed to disagree. Those of us from the FMS/CFS Board discussed this in disbelief as we had never seen anything like it.
It was like Nazi Germany on there,with medicine being practiced over the Internet by an Engineeer, not an M.D. IMO, prosecution is in order, and this would not be the first time (see my P.S.)
In addition, I posted my lab results as requested, and did not mention that I have some background in the medical area.
I had already noticed that they were telling everyone that their results showed they needed the MP, and wanted to see how my lab results would be received.
I was told by a nurse who works with TM that my vitamin 25D and I25D results indicated I needed the MP (They did not. Both my ratio and my indidivudal test scores were perfectly normal even by his standards, and did not fit TM's parameters for the protocol at all).
I was also told I was anemic, as the nurse said would be predicted in those needing the MP. My Hemoglobin, hematocrit, RBC's, etc. results were totally within normal ranges, not even close to being anemic.
She also said my triglycerides were too high, and said this is an indication of inflammation. (My triglycerides were well within normal range. A Google search of the astonishing news to me that high triglycerides = inflammation turned up only one article, written by... guess who?)
Totally depriving your body of light and vitamin D carries a whole host of disease risks, many of them deadly and proven.
I ran like hell, and never looked back.
Klutzo
P.S. One might look into prosecution for previous business fraud in a certain European country.....
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I'm sorry to disappoint you, but I can assure you, I am NOT an undiagnosed Sarc patient and I am NOT a zealot molding facts to fit my theories. After much testing, I was found to have Lyme (neuro-Borreliosis), Babesia, Bartonella, Mycoplasma, HHV-6, EBV, and Candida as key infections. My diagnoses varied from CFS to FMS, Lupus and MS. Of course, Lyme disease is capable of mimicking all of those diseases and it is complicated by the presence of co-infections. I had many tick bites (hundreds) over the years at my grandparents' lake house, including the initial one that first made me so sick. I have no reason to doubt my many positive Lyme tests or the fact that Lida Mattman herself performed my first positive culture. My 1,25-D and 25-D testing did suggest I would be a good candidate for the MP. However, the same testing was not as conclusive for my husband (also a late-stage Lyme and co-infection patient) who has done well anyway.
My NOT being a Sarc patient actually made it that much more difficult to find a doctor who was willing to treat me when I first began the MP. It also made it much more difficult for me to trust an unproven protocol long enough to see results. I am very grateful that it has worked well for my Lyme and co-infections, despite my not being part of the Sarc cohort that first did so well with it.
I'm disappointed that you could even suggest that I might ``spontaneously remit'' from ``Sarc'', a disease I don't have and have never tested positive for. It's clear to me that you did NOT read my story or you would not be making those false accusations. I first became sick following a tick bite in the third grade. I am 41 years old now and in one fell swoop you have discounted the long decades of suffering and searching for a diagnosis and answers when there were none to be found.
Spontaneous remission isn't a term that could ever adequately describe the Herxing and the misery I went through in order to attain the level of health I am enjoying today. My success has been an uphill battle all the way and it pains me when others, like yourself, who don't even know me, try to discount and belittle it. Your accusations are an example of why I seldom participate in the forums anymore, because I can't help but find them to be a waste of time. I will gladly leave Lymenet behind for the ``lifers'' and I will go back to enjoying my healthy new lifestyle.
More information about Dr. Trevor Marshall's background and his medical qualifications can be found here:
http://www.marshallprotocol.com/forum2/7779.html He is certified to teach CME credits for doctors and has been invited to present at some very esteemed international conferences, including the prestigious Karolinska Insitute's Days of Molecular Medicine. I think that the MDs on the committees who have invited him are quite capable of judging his credentials and his body of knowledge in his area of expertise. That said, he does lack tact and diplomacy and I do not participate in his forum because I object to the unnecessary level of censorship there.
I do hope that you and the others here will find the answers that are right for each of you. I can't help but feel that it would behoove you all to try and make Lymenet a more supportive and healing environment if you hope to allow ideas and information to flourish here. Without the exchange of information and ideas, there would be no answers for anyone.
Posts: 487 | From USA | Registered: Feb 2002
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Lonestar has made a near full recovery after a well documented case of lyme and co-infections. (I remember when she was a mess and doing the same treatments that many of us are doing, and that we are so vocal about preserving.)
Will she now read the results of Ken's survey and decide that she is not better? Or perhaps that she was never sick? Or that she was a sarcie, after all?
The fearless leader at that site may indeed rule with an iron (and utterly insane) hand. But that does not negate the fact that many Lymies are doing well at this protocol when nothing else has worked.
I myself have not tried his protocol for many of the reasons you have listed, but I am not so willing to throw out the baby with the crazy bathwater.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
I am no statistician, but while your intention may be good, I don't see how this can help anyone. Here's why:
- If you collect data without a scientifically rigorous design, who does that help? - Both the survey and the data results are confusing to me. And my brain is not that Lymey at the moment! - What are the ``controls'' in this group? And how do you know who dropped out (of any treatment) and why?
I could go endlessly, but you get my point. I like the idea though, but data collection needs to be done much more carefully. I think remedyfind is on the right track. Have you seen their extensive list at:
I'd like to know what organization is / has taken the challenge to do a national survey of patients!?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
If the method works only for one person per 500 or so it is not a good method.
Damp the bathtub water boldly, there is no child in it.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
If the method works only for one person per 500 or so it is not a good method.
Damp the bathtub water boldly, there is no child in it.
>>>>>>>
Areneli,
Where do you get those statistics? It's not say, 1 in 501, or maybe 1 in 502?
Judging by many on this board, and by myself, the rate of success for ILADs methods are not particularly good, either. Therefore, are we to surmise that the good folks at the IDSA are right?
If you leave the man's personality and questionable business practices out of the equation, what you end up with are many Lymies who have been helped (and many who, for whatever reason, have not).
I read the MP site frequently, as I do this one, and the CPN one, and The Road Back site, and the Experimenbtal list, and the Yasko list, and I&I, and ... well, you get the idea. And, like it or not, there are many Lymies doing well on the MP, or something like it.
And, yes, I would feel beter about it if it were not run the nutty way it is -- and if that Aussie moderator would finally improve, or tell them off for having "herxed" for several straight years without a lick of improvenment.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
I spent a lot of time looking over the MP site. My personal impressions : The pulsed minocycline theory is probably what makes anyone improve who uses this approach.
I am severely skeptical about the promotion of abdicating sunlight and Vit D , which are critical for immune and neurotransmitter function ( not to mention their relationship to breast cancer , depression , and colon cancer ) .
" Doctor " Marshall , IMO , has a personality disorder and tends to view his ideas as TRUTH that should never be questioned . This really turns me off .
That said, I think there are many people who are doing protocols somewhat like his and getting some good results . So, it seems some of his ideas may be valid , and some are clearly RISKY .
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Your words are coming right from Marshall brainwash treatment. I talked to him once and that is about what he told me.
In fact many of us improve or recover using ILADS methods. I am myself 80% better. Also some people use herbs or other altern treatment.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Firstly, I second what Klutzo has reported about his knowledge and experience with the MP. Only, in my case, I tried it for almost 3 months. I was not ever able to get my blood pressure out of the extreme low zone. Those who know the protocol, know that the main drug used is used to treat high blood pressure. In addition, I experienced no benefits after the first week or so.
A warning: Marshall and his gang DO NOT LIKE CRITICISM. i, like Klutzo, was banned from the forum after expressing an opinion/experience perceived as negative. Marshall also tried to sue someone who voiced warnings on another private board about the protocol. His suit attempt against thjs person was immediatly thrown out by the judge in CA.
To date, no professional studies have been done to prove any benefits of the protocol.
Loads of research is coming out right now, from Europe and the US about the dangers of low Vit. D levels, and the benefits of supplementation. Vit. D is showing itself to be a natural antibacterial. I recently had an appt. with a respected Endocrinologist who spoke to me at length re: all the new research on Vit. D.
Posts: 364 | From California | Registered: Sep 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
To my undersatanding, the essence of MP is to semsitize pathogens to antibiotics (minocycline)by using Benicar and reducing Vitamin D.
The dose of Mino is very low like 10mg per day something.
This sounds great and quite interesting, cause at such low dose of abx, we don't need to worry about the side effects of abx and the pathogens still can be under control and killed.
However, I am not convinced by the explanation why Benicar and low Vitamin D can sensitize pathogens to abx.
Posts: 1078 | From Fairland | Registered: Apr 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Oh my gosh!
It sure would be nice if we could all listen politely to each other and not confront others with our decenting opinions when they espouse a method we are not high on. If they had success with a method then just be happy for them and let it go.
Every issue on this board seems to become fodder for a fight.
While you are bashing Trevor Marshall (I don't know him, haven't researched him and don't have a personal opinion about him) you better check out your own ILADS president, Richard Stricker (I don't know him, don't have a personal opinion about him, hope I remembered his name correctly) I was researching his retort to the ISDA guidelines and stumbled on some bad history concerning him. Seems he was fired once for falsifying research. Maybe he is guilty and maybe he isn't, but it just goes to show none of us should throw stones at others because none of us are perfect.
If someone gets well with a protocol, smile, nod and be geniunely happy for them. Doesn't mean you have to follow them if you don't choose to and you are NOT the designated judge of who has it right and who doesn't.
If you have a decenting opinion, say it nicely like some others did here and still give credit to the poster's personal experience. Don't be so arrogant as to say they must not have had Lyme disease to begin with.
Geez Louise!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Well said, luvs2ride!!
Posts: 1366 | From Southeast | Registered: Sep 2005
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Hey there, don't become confused by all the marketing hype about the benefits of so-called "vitamin D" because they can be very misleading. Firstly, if the family of D metabolites had not been discovered until recently, it never would have been called a "vitamin" because it's not a vitamin at all. It's in the family of potent steroidal hormones -- a secosteroid, to be exact.
Furthermore, it would probably have been restricted to being an Rx substance only, rather than being allowed to be sold OTC, because that's how potent these secosteroidal hormones can be.
Folks who claim that they feel better when taking them are gaining short-term palliative effects from them which eventually become cumulative and which lead to longer-term side-effects. However, those effects are so gradual in onset that they are seldom recognized by the person who is taking extra "vitamin" D. It's NOT innocuous!
It's a little like taking prednisone or cortizone. You feel great at first until you start to feel worse and worse later on, as it builds up in your system. Both of these substances, the steroids and the secosteroids, can have longer-term immunosuppressive effects.
There's a lot of advertising hype about the putative benefits of exogenous "vitamin" D, which vanish when the research results are studied in detail. The Vitamin D Council is to blame for much of this confusion. However, when one looks at the latest results coming out from research studies on osteoporosis, one will see that the results have been surprisingly negative. Wonder why?
Hypervitaminosis D leads to bone resporption and therefore to osteoporosis. That's right! Check it out.
Why is there so much advertising hype out there then, one might ask. Think about patent royalties and the profit motive, pure and simple. If you doubt that, then consider that the University of Wisconsin, which holds the patent on the manufacture of synthetic D, boasts about their $35 million dollar biochemistry building built from the profits of that one lucrative patent.
Next, let me offer an example from personal experience about the benefits of avoiding synthetic vitamin D. Hubby, who would never agree to living the restrictive MP lifestyle, has not had cold or flu for the last two years -- for the first time in over two decades -- after I switched him to vitamin D-free milk two years ago. That is the one and only change which we made, but his health has improved tremendously with just that one simple change.
Prior to this change, he used to miss work several times during every winter's cold and flu season each year, but he hasn't had to miss a single day of work for the last two years after switching him to organic D-free whole milk. He's an avid mild drinker at breakfast, so he would never have agreed to give up his beloved tall glass of milk each morning. Even I was surprised at what a huge difference this one simple change to his diet has made.
And guess what else. Sweetheart (my nickname for our daughter) found out that she wasn't lactose intolerant at all after she switched to D-free milk. She tolerates milk just fine now, as long as it's D-free! For years, she had thought that she was "allergic" to milk or that she was lactose intolerant. What a big joke on all of us that discovery has been when we recall all those years that we argued about it because she refused so adamently to drink her milk because it didn't "agree" with her. It was that @#$%^&&* "vitamin D" in it which was her nemesis all along.
Therefore, even if you don't want to pursue the MP for whatever personal reasons, do consider following a D-free diet and getting rid of all dietary supplements which contain D, including fish oils. You'll be surprised at what a difference it can make, although you will probably find that you do suffer an increase in symptoms at first when you start eliminating it. That's because your immune system will be able to function better without it, and you'll start to experience more Herxing when you first start to eliminate all exogenous sources of "vitamin" D.
Try not to become too confused by the numerous research papers which make spurious claims about the necessity for exogenous source of dietary D. Consider the source. There's a profit motive behind every bit of this research. The race is on to find new "analogues" of vitamin D, in hopes of defeating cancer. Don't hold your breath in anticipation. So far, there are many dubious claims, but no good honest hard data to back up any of them. However, one has to read carefully between the lines to discern that.
I don't want to get into arguments over it, so I won't be revisiting this topic to debate this point further. It's up to each person to make up his/her own mind about it after studying the "vitamin" D research very carefully for oneself.
Just one hint though. Watch out for the conditional/subjunctive mood of their verb forms when you read through those studies -- ie, when they use words to imply certainty which doesn't actually exist.
The proponents of D supplementation are very clever with their use of subtle linguistic devices to convey a sense of certainty which doesn't really exist.
So, if you suffer from bad brain fog, then try not to be too easily deceived by their verbosity nor by their proliferation of the medical literature with their poorly designed research studies. You've got to be very astute to discern what's wrong with those papers because the proponents of so-called "vitamin" D are very prolific writers and they delight in quoting themselves (and one another) frequently.
Remember, if a mistaken concept is repeated often enough, it is easily perceived as an accepted truth. Buyer Beware.
PS -- Oh, I almost forgot to address the remark about the fact that pulsed antibiotics alone are enough. For some lucky folks, that can be true, but for the most part, the addition of Benicar is a major advantage. Even if you don't want to resort to Benicar though, at least do consider trying to elininate dietary D and also avoiding excess sun and light exposures by using sunscreen and wearing sunglasses.
NoIR (No InfraRed) sunglasses are better than other regular kinds of sunglasses which shield from UV light only.
You might be quite surprised to find what a major impact just these simple lifestyle changes can make for you, even if you aren't interested in following the full MP with the addition of Benicar to potentiate the effect of the pulsed antibiotics.
Posts: 4563 | From TX | Registered: Sep 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Coldfeet:
First of all- if you look at the drugs that are used in the MP, you'll find they're all FDA "approved" for use in the USA. The FDA doesn't approve therapies.. it approves drugs.
I've been around and familar with this group from the time before they joined forces and started their 'therapy'. I parted company with them after dissagreements about whether or not low dose antibiotics actually kill some specific pathogens- or just keep them in colony form (which means you'll be on low dose abx forever - just like a cystic fibrosis patient- to remain asymptomatic - that is if you even become asymptomatic.).
Every single person I talked to (including Lonestartick) had large amounts of abx before ever starting this particular low dose therapy. So, there is alot of comparing apples to oranges in that group, with subjective observations are stated as fact. And even so.. I haven't seen any study (even field study) results come out of that group... just internet banter.
The censorship, threat of lawsuits, and the my way or the high way attitude of the group - was a turn-off to me also.
But feel free to give it a whirl... there are many Alternative therapies out there for what ever suits anyone.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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fwiw, heres an abstract on some very early work on one of vitamin d's properties on the molecular level,and suggesting further research directions for its therapeutic applications.
secondly, for more information on Revici's work with respect to Twin Formations, i've listed the title of his treatise.
Med Hypotheses. 1990 Mar;31(3):165-70.
Testing the usefulness of twin formation theory: the tocopherols and vitamin D. Kunst L, Ladas H.
Hunter College CUNY, NYC 10021.
The theoretical and empirical search for biologically and pharmacologically active molecules has long been of interest.
In 1965 Revici proposed a class of biologically and pharmacologically active molecules which he described as having twin formations.
Twin formations are defined as molecules containing two or more adjacent carbon atoms having the same induced electrical charge.
An examination of recently discovered facts about the biological activity of the tocopherol family and of vitamin D lends support to this concept, which if true, could greatly facilitate selection of promising pharmacological substances for testing. PMID: 2345533
Revici E., Research in Physiopathology as Basis of Guided Chemotherapy: With Special Application to Cancer. Princeton: D. Van Nostrand, 1961Posts: 2708 | Registered: Feb 2005
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PQ: Dunno the relevance of the study. For everyone citing vitamin D's ``greatness,'' I can find one noting it's toxicity effects (e.g. one that shows further lumbar vertebral bone softening for people with osteoporosis taking D).
bpeck: Good point on the FDA approval. I'll look into the FDA thing. Your right - many folks do try heavy dosed of antibiotics (and everything else) before the MP. I did 400 mG of doxy (prescribed by a ``Lyme literate doc?!) and had to stop - my gums were receding!
Tx Lyme mom: Can I hire you?!
luvs2ride: I like your style! Are you a board moderator? If not, maybe you should be!
Dave6002: I started on Benicar, which made me feel better while also showing some herxing. One week after starting benicar, started on 25 mG mino, then increased to 100 mG mino (where I am at now). Next month, I'll be adding zithro, then in phase 3, a third antibiotic (clindy I think). All this takes down inflammation (which gave me most of the symptoms). I had the same questions you did, but the many, sequential changes in my immune system were proof to me that is was ``working.'' These many body changes included: BO, twitching, swollen lymph nodes, cold-like symptoms, etc.
Anneke: My blood pressure dropped for about 1 week very low, which alarmed me. But then it went back to a perfect BP thereafter. After speaking with several patients, I've concluded (rightly or wrongly) that the BP drop is expected, but its duration depends on the type and degree of your infection(s).
nomoremuscles: Thx for trying to clarify and reach out for understanding!
Areneli: Is 80% good enough for you! I was 100% better for a few months, after ingesting olive leaf, oregano oil, grapefruit seed extract (2 types), colostrum, C, and many others. I thought I was ``cured,' but the bugs came back with a vengeance! I'd rather not have 20% of me host any bacteria, as I know they can return!
Jennifer Geddie: Good points, but I see the MP as the most risk averse for me. The D avoidance is inconvenient, but my patient-based research ``fills the gaps'' where outcome data is absent.
Lonestar: Thanks for your clear-headed thinking and taking the time to explain your outcome. I do have many questions for you; dunno if this is the right place (See #2 below).
I have two constructive ideas for all of you to consider - please give my your blunt feedback on these:
1. It is clear to me that EVERYONE would like to see patient outcome data for people that tried various treatments. I shared some links to remedy-find, but not enough people have provided feedback on these treatments, so the data utility is dubious. Why are we not rallying together to petition The Lyme Disease Network and ILADS to implement a scientifically rigorous survey? Has anyone tried?!
2. It appears that some folks here are upset with the MP forum for myriad reasons. If there were an alternative forum focused on the MP, would that help SOME people get information - that they may not be getting now? If so, let's discuss. I am new to the MP, but not to creating global discussion boards.
Like I explained earlier, I just want to help people get better - whether they use voodoo, the MP, antibiotics or pixie dust!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Coldfeet: you say, "I had the same questions you did, but the many, sequential changes in my immune system were proof to me that is was ``working.'' These many body changes included: BO, twitching, swollen lymph nodes, cold-like symptoms, etc."
I have been researching the MP, and have considered it, but know how hard it will be for me to avoid sunlight. I am already deppressed, and in pain. My doctor currently has me on Doxy, and Ceftin, and I am also experiencing these same side effects that you talk about, as well as alot of others: chest pain, achiness, headaches, photo-sensitivity, etc. You know the drill. I know they are working when I experience the herx, so I guess I just don't understand how you are so sure. I guess the question becomes, if you or I will relapse or not...how to know this, I don't know.
I have read on the MP site that Ceftin is a cell wall inhibitor, but I read a lot, and don't know what to believe. I feel like if I am experience a good herx, that should be reason to believe that atleast the antibiotics are doing their job, right?
Posts: 1 | From Haymarket, VA | Registered: Dec 2006
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Sorry for the delayed response. If you are making a link between Ceftin and the eradication of cell wall deficient bacteria, I can't provide any insights. But I am sure that the MP is a different approach, and it works within a carefully timed sequence that follows your body's immune response. And as you know, these naughty bugs can change form and ``hide'' when challenged, so the ``right'' solutions for entrenched CWD bugs are still being proved out...through people like us!
At first, the whole MP thing seemed odd to me, but I am now ``graduating'' from phase 1 and going into phase 2. Amazingly, all of my symptoms are gone, especially the annoying fatigue. Of course, I still have some mild herxing, but I really didn't think I'd be this far along after 3 months. And I won't know what joy phase 2 brings until I get there....
I am happy to help or comment, but private message is the best for me.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Just a quick update. I am doing much, much better these days, and ``graduated'' from the 1st phase of the Marshall Protocol. I started the 2nd phase a few weeks ago and get better each day.
I go to the gym almost every day and do moderate workouts and put in a pretty full day. No more brain fog!
If I can answer anyone's questions, I am glad to help. Feel free to email me: info (at) adrsupport.org
Take care.
PS: If you've not seen this topic before, you may benefit by reading it top to bottom.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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