For the record the diet protocols were strictly followed in my case. I did use the sun glasses but this is South Carolina. I could not just retreat into a cave. This was neither possible nor practical. It seems to me the issue of the very real dangers inherent in the protocol, even when you follow it with utmost rigor are being ignored.
I submit that if the slightest exposure to sunlight is going to cause you to get as sick as I did then that protocol-pardon my french is a bucket of horse crap. You make the "slightest slip" and the results are disastrous. Too many people have ended up in emergency rooms from being on the Marsahll Protocol. The thing is dangerous.
In my case it was not the pain or the rest of it, it was the development of intestinal bleeding. That can kill you. Thousands used to die of it every year. The long term effects of massive uses of Benicar as an anti-inflammatory medication have not been studied. It is known that a number of other anti-inflamatory medications have proven to be dangerous and have caused peoples' deaths. Given the results so many people have had which are so negative those people blithely advocating it are doing a grave disservice and should stop it. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
Thanks, Joyce, for your thoughtful response on the MP. It seems that Dr. Marshall has added a significant piece to the TH1 debate in the use of Benicar. This is a huge area for research, and hopefully we will learn more about its uses and potential dangers in the next few years.
To clarify a point you brought up, I personally am not taking 20mg of Benicar once a day. I take 20 mg. every 8 hours (which as you mentioned is apparently still not officially the protocol, and in Dr. Marshall's opinion sub-clinical). Another point to add: you mention that you have not read of MP users going to the hospital recently, which is very good! Hopefully they are not. But as a researcher, you must understand the very real potential on this tightly controlled forum of the potential for selection and/or information bias: two very serious threats to valid research.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
TXLyme Mom:
You are totally right when you say ist's not for everyone.
As a matter of fact, IMO, it is for a only very FEW.
Your daughter, who has suffered with Lyme has been treated many times in the past over several years with standard abx.
You report that her case responded to this protocol (or a variation) following a fairly standard several year antibiotic therapy for Lyme. This is an important point, and it's similar to Scotts case, who benefitted greatly using low doses of Benicar (and intermittant abx) ** AFTER ** his Lyme was about 75% under controll and AFTER he'd done a more standard abx therapy..
This is also an important point, especially now that we know the Lyme spirochete can build resistance to some abx.
Jelly is doing a good job explaining how some dangerous side effects of this protocol were passed off as a herx- or the patient was blamed for the side effects.
And there were other ways of silencing people who were not in total agreement: editing, banning from open discussion or from the internet site, or defamation law suits.
In closing: TxMom And Joyce- while it's obvious you two are articulate and informed salesmen for the protocol.
It's important that people who were also intimately involved with this protocol, (but may have less than glowing reports), be able to tell their story also WITHOUT being made to feel thay THEY somehow contributed to it's failure or that their opinions are somehow personal attacks.
Barb (one of the banned)
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
To make a long and rather ugly story very short...I followed the MP protocol to the letter and it nearly killed me. It has taken a very long time to recover to my previous poor state of health. YMMV
Posts: 564 | From NW Arkansas | Registered: May 2003
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Studies on Benicar have shown side effects profiles not much different from placebo.
I agree that with any relatively new drug, especially used at higher than usual doses, there are possibilities of problems, particularly in subsets of people. But to put it in context, see these links: http://marshallprotocol.com/forum2/11.html where a number of studies are quoted.
Also, see the official information on Benicar from the government is at http://tinyurl.com/asyfc :
And here is the beginning part of the article on Benicar that JellyBelly posted, which is not so negative sounding:
Angiotensin-converting enzyme inhibitors and angiotensin receptor blockers may be the best thing for your complex patients with hypertension or heart disease. Here's why.
ANNE WOODS, RN, CRNP, APRN,BC, MSN Clinical Director of Journals * Lippincott Williams & Wilkins * Springhouse, Pa. Nurse Practitioner * Chandler Hall Wellness Center * Newtown, Pa. You can administer a lot of different drugs to treat hypertension or heart failure. But what if the patient has comorbidities that put his kidneys at risk, like diabetes or renal insufficiency? Then some of those drugs could be bad news because they don't preserve renal function, always a key concern for patients with diabetes.
Fortunately, two types of drugs--angiotensin-converting enzyme inhibitors (ACE-Is) and angiotensin receptor blockers (ARBs)--are renal protective, making them good choices for complex patients, such as those with hypertension, heart failure, and diabetes or those with metabolic syndrome. In this article, I'll take a closer look at these drugs.>>
There is a possibility of some effect of Benicar on aldosterone, but very few, to my knowledge, have found this to be a problem, and even then, as far as I know, the problem has been assumed rather than tested for. And in the case of JellyBelly, perhaps a lower dose of Benicar would have worked. It may have been the Benicar at those high doses was just too high in this case and was causing too much Herxing by itself. I wonder, if you tested your aldosterone and/or your cortisol before and after the MP?
I have been tested as having low cortisol too, and on several occasions have taken physiological doses of it for periods of time and it did me no good, but I wish JellyBelly luck with it.
I think it is important to dring plenty of water and consume plenty of salt on the MP if one is prone to low blood pressure. Also, I have found that lowering my food reactions using a free at home objective pulse test has helped with my blood pressure and many other symptoms by helping me to more accurately identify my food and supplement allergies/sensitivies/intolerances.
For people who are very sick, I think looking into their hidden food reactions, like I did would be a good idea ( I refer to this in my talk transcript and several articles I have written, see http://members.aol.com/SynergyHN/transcript ). I think this was very important for me, as I emphasize in this article. For others who are quite sick, it might be a good preliminary to trying the MP. I think it probably also reduced the stress on my adrenals caused by continual food reactions (and I know it helped my immune function, see Issue 2 on my case history at http://members.aol.com/SynergyHN ).
re Docjen's comment: using 20 mg, 3 times a day of Benicar, I personally think this might be enough for some people, but it may be quite variable. I have heard through the grapevine that a fibromyalgia group in South Australia has been using somewhat lower doses, like 40 to 60 mg daily, as a sort of modified MP. So, maybe it would work for some population groups. I have heard they are making a video about it and can let you know when it comes out.
Barb, I certainly don't mean to imply that others don't have the right to share their negative experiences on the MP -- I hope we can learn from them and I hope I can help people, especially those who have had negative experiences on the MP, in whatever direction they decide to go in for their treatment. I have been sick for 20 years, and for about the first 10, I was more than 90% bedridden. I learned certain things that have allowed me to improve considerably. So, I do think I have had a lot of experience and have done a lot of research that may prove helpful to people. I suffered so much for so long, I determined that I would make something good come from that suffering if I ever got better.
I just hope we can keep the dialog friendly and not let past disagreements (on the MP board or elsewhere) keep us from discussing things with mutual respect or at least giving one another the benefit of the doubt with regard to intentions.
I have and continue to try to share information on any therapy that has helped me or I see potential for and I particularly focus on ones where there isn't any financial incentive for me or others to write about it (since I know these types of therapies will be ignored more often -- unlike patented products and multi level marketing). Anyone can see by looking at the newsletter that I write (for free on the SynergyHN web site) that I have covered a wide variety of topics for which there was no financial incentive and I have to say, I don't care for the implication that I am a "salesman" for anything. My motives are purely to try to help people by sharing information to the best of my ability. That is the truth and you can choose to believe it or not.
re Thomas' comments: I believe (correct me if I'm wrong) that Thomas is referring to anti inflammatories of the NSAID or COX 2 inhibitor class (like Vioxx), since these are the sorts that cause gastrointestinal bleeding. These are completely different in their mode of action and effects on the gi system, so I don't think it is a fair comparison to Benicar. Very few people have reported any gastrointestinal problems that persisted with the MP. Some certainly have had them as part of Herx, but they usually resolve in time.
I also disagree that so many people have been having to go to the hospital on the MP at any time, and especially in the last 6-12 months.
And not everyone, by any means, has to be as super careful with regard to light as Thomas indicates -- especially with the use of ketoconazole cream. There are some people that do need to be more careful than others, but not everyone does. And many people are still able to work when on the MP.
I hope to describe the MP and my experience -- I try to let people know about it and that some people are being helped by it, but I encourage people to study it for at least several weeks to decide for themselves if they want to try it. I admit the data is incomplete, and if people choose, they can watch and wait and try it later when there is more data. But in my case, I have to say that I'm glad I didn't wait. And it isn't like there aren't dangers to other approaches.
While I agree, that there is the possibility of some bias on the MP site, I think in groups outside the MP site, the anti MP view may be somewhat over represented and very forcefully presented. People like myself, who present a generally pro MP view, are sometimes discouraged from posting in forums like this and post only in the MP board. So, anyway, here you are getting the pros and cons intermixed. Like I said, I think that significant improvements have been and continue to be made in the protocol, so some of the criticisms from those who tried it a year or a year and a half ago, might not be as applicable today.
Best wishes to everyone and good luck on whatever path to health you choose,
posted
Thank you, Joyce, for your very thoughtful comments. This is definitely a dynamic area of medicine, and we will most certainly see changes in all treatment protocols in the next few years (hopefully!). It will be watershed if any new studies and research on lyme and lyme treatments and protocols can make it into some high-impact journals so the medical establishment can begin thinking of lyme in a new paradigm.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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Wasting your time here in this venue is just silly. The majority of the Lymenet crowd already has their minds made up and that's fine. They are happy, so let them be.
I don't waste my time here anymore because I am no longer looking for answers and because they were so unsupportive of me when I first began the MP program that I felt free to leave LymeLand behind and to move on. I did try to come back and post progress on occasion, but I was subject to so much harassment here at LymeNet that it was simply no longer worth the effort.
The other members here just did not understand that without insurance and with my LLMD retiring suddenly in the midst of my most severe relapse, that I felt I had no other recourse. I was desperate for answers and I had to find a better and more affordable solution fast because I was about to fall through the cracks after doing 17 months IVs plus various oral antibiotics - all of which were much more dangerous than the MP. Going the IV route did land me in the ER, in fact! The MP has proven far safer for me than IVs, but I have been very careful to comply with the lifestyle after realizing just how crucial it was to ensure success.
Thankfully, the MP option came along at just the right time and it has proven to be my answer. I do not suggest that the same answers work for everyone for a variety of reasons. Also, the lifestyle restrictions would be too difficult for many. However, I had already lost my lifestyle, so it didn't matter to me. I had nothing left to lose.
Trevor's disease model made sense to me because I already understood the pathogenesis of borreliosis, but I was still very skeptical about whether or not it would work for me with my lab-confirmed co-infections. I was also very worried because I had consistently had very low blood pressure since becoming sick. Nevertheless, I studied the concept and made my own decision about it. I realized that it was a slow process and committed myself to giving it a fair chance. No one was more surprised than I was to find out it actually did work exactly as predicted.
I have not participated much at the MP board, because I was very uncomfortable with the tone of the board and I found that the negative vibes there greatly hindered my ability to stick with the protocol. The tone of that board actually added to my skepticism and my overall doubt. I watched them run off many good people who had much to offer.
That said, the protocol itself is the real deal. I have been on the MP for 19 months and I am in phase 3 and feeling almost completely recovered. My immune system is fully functioning. (I will not claim remission until I am 5 years out; so don't ask me about that.)
I am living proof that it works, and I don't regret my decision to try it in the least. However, I think that sometimes the most important thing that a patient can do is to heal and to begin living a normal life again. I have given this much thought and I have decided that my best and highest purpose is to move on and to start living life to it's fullest -- away from the forums. Perhaps someday, someone will remember that someone else really did get well and that will give them the strength and determination to find their own answers.
Joyce, Tex: Leave this forum behind and don't look back. Go out there and seize life and enjoy it. (Tex is my Mom, so I hate to see her slammed as a salesman for a protocol that she is not affiliated with.) The few patients who are seeking what you have to offer will find a way to locate you. Goodness knows, it's hard enough for these patients when they are suffering, without topics like this one that become so negative and divisive, with people intent on spouting alarmist nonsense.
Wishing all of you health, healing and the ability to once again live life to its fullest, especially you Thomas - I know you have endured far more than your fair share of suffering and you have been a true trooper. I commend you for your tenacity and your ability to persevere with your keen wit and sense of humor intact. I pray you will find your own lasting answers. I am going to go back to enjoying mine.
Likewise for Digby, who I know is sincere, because he had such a difficult time with the MP when he hit a ``Perma-Herx'' and didn't know how to get back out of it. Digby, we've learned some really good, new coping strategies in recent months in case you ever want to consider a new attempt at the MP. If you don't wish to try it again, I certainly understand.
I have turned off my PM function at this website because I do not enjoy being harassed. I would normally check back to make sure that nothing I said in this message was taken the wrong way, but I am going to be traveling this week and that means that I may not have internet access to do so.
Wishing each and every one of you health and healing, LST
Posts: 487 | From USA | Registered: Feb 2002
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Wow LST, it is nice to actually realize who you are. I was very interested in your progress at the beginning of your journey and had some correspondence with your mom. I am glad you are doing so well.
I think you need to try to understand where some of us are coming from. Your experience has turned out well, but many of us have had a terrible time. When people like you and Joyce coming proclaiming how wonderful the MP is, understand that what seems like anger is not really targeted at you, but rather the author of the said protocol. We were treated like crap. Even you said yourself that you did not go to the board because of the negative atmosphere. Well imagine for a minute you were the direct target of that negativity. Imagine that you were now the one who was to stupid to follow the protocol. Imagine that you were banned for asking questions when you were sincerely trying to find help and answers to the reactions you were having. Imagine not getting support or having anyone care enough to try and find a solution but rather be blamed for your reaction.
Ya, there are some very angry people, who feel there are problems and that if this thing is going to work for the masses, there needs to be questions and solutions to problems. If you can get as sick as Thomas did from a moment of light this thing needs work. How can anyone predict who will be the one to react so severly? Can you or Mr. Marshall? Not at this point and to just make it sound as if, if you just do it right you will get well is crazy to say the least.
You know what, I have been sick since I was 12, I am 49 now. I have been standing on deaths door. BUT, I am in remission and to a very high degree WITHOUT Benicar and I know this isn't what anyone wants to hear but with hardly any ABX either. What worked for me? I think it has something to do with the heparin I was on for 3 years. Mr. Marshall is very opposed to heparin even though other docs still use it while using the MP. Heparin has some ability to block angiotensin, but to a much lessor degree. Maybe it has something to do with that, meaning the reason I am at about 85-95% remission. I live a VERY full life right now and have been for several years. Thing is, it might not work for everyone, and for some it might even be dangerous, no matter how much I want people to be well like me.
What works for you obviously didn't work for me or Thomas or many others I know of. We don't feel it is safe for people like us. Don't be irritated with him or me because it wasn't as great as it was for you. It goes both ways. You did awesome and that as I said before is great. People just need to be able to discuss the possibility of problems and that is something that is not allowed, on that website. Just pretent everything is peachy is the motto.
I am always glad when someone gets their life back. Enjoy yours.
Posts: 1251 | From california | Registered: Apr 2005
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posted
There is no doubt that the mp is a very difficult protocol to follow, and that there are some risks. There are risks to every protocol, and each patient will weigh and experience them differently.
I did the marshall protocol for almost six months, and I followed it very strictly. During that time, I became sicker, though not perilously so. I nonetheless made the decision to stop the protocol because I felt that I still had too many other untried options to continue with a protocol about which there were still so many unknowns.
I set up mp.com for marshall and served as the board administrator for seven months, very reluctantly for about half that time. The mp is like sausage: it looks much more appealing if you don't know how it is made... Had I not seen what goes on behind the scenes for so long, I might very well have stuck it out. Who knows.
I absolutely do not rule out the possibility that if I had stuck with the mp that I might be doing much better now. It is also possible that I could be much worse. I will simply never know.
I also have not ruled out going back to the mp at some point in the future if I reach an impasse at which many other Lyme protocols have failed, AND when more is understood about the mp by LLMD's.
There needs to be open, objective discussion of the mp, devoid of censorship and emotion so that patients have access to the facts. (Think Joe Friday.)
mp.com is pretty much devoid of emotion, but fraught with extreme levels of censorship. Here we can have open discussion, but people seem to struggle to suppress their anger, though I'm impressed with the general tone of this thread compared to threads past.
Please don't run off people who have done well, and please don't criticize people who are reporting their bad experiences. All needs to be openly discussed.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Is there anyone in SC that is on the MP?
Posts: 208 | From Greenville SC USA | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Who is cured of LYME?
Anyone?
And how long have you had NO symptoms of Lyme?
Is it the benicar or is it the abx/antibiotics?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I was on the Marshall protocol and used to frequent the website.
My experience? It didn't work for me; but, hey, it might work for you.
Plus, the way people were treated on the Marshall website was horrible. I saw people asking genuine questions and being castigated.
Reminded me of a cult.
There's been a lot written about this protocol on lymenet. Just do a search.
Posts: 856 | From Texas | Registered: Jan 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Lonestar:
I'm very glad you're feeling better, and understand wanting to get on with your life and spending less time on forums.
But,
I think you are having difficulty understanding the difference bewteen true harrasment, and the real desire for an open and fair discussion on the pros and CONS of any therapy (or topic).
To disagree is NOT the same thing as harrassment. To discuss or question a protocol or a drug within a protocol is is NOT the same thing as slandering or harrassing an individual. To talk about good results but prohibit discussion on adverse results is supression and control - not meaningfull dialogue.
IMO the act of passive aggression has been raised to an art-form by some of the people on the site I'm not allowed to mention.
Good luck with your life- and good health to you. Barb
LONESTARTICK WROTE: TXLM, Joyce,
Wasting your time here in this venue is just silly. The majority of the Lymenet crowd already has their minds made up and that's fine. They are happy, so let them be.
I don't waste my time here anymore because I am no longer looking for answers and because they were so unsupportive of me when I first began the MP program that I felt free to leave LymeLand behind and to move on. I did try to come back and post progress on occasion, but I was subject to so much harassment here at LymeNet that it was simply no longer worth the effort.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
hey tequeslady, people get castigated here too. All you have to do is question your lyme dx. Just question the whole "chronic lyme" theory. I think this sort of behavior is everywhere.
Everyone thinks they are right, they are even smarter than all there docs, except the llmd or the FFC's docs.
How long did you try the MP?
Posts: 208 | From Greenville SC USA | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by shelley: Bothrops, I was on it for 3-4 months but had to go back to work, HAD TO, and could not handle 40mg I think it was of Benicar q4h to counteract the light I was being exposed to. I felt it was too much on my liver and my gut told me to get off. That was over a year ago and I am doing much better, but not sure why. Don't know if I ever had Lyme for sure (I have herxed, but it still doesn't guarantee LYME).. if so though, maybe it went dormant 'cause I'm feeling good, knock-on-wood
Iam happy for you shelly!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
You can also go to the http://marshallprotocol.com site and search for people from your part of the country and send a private message to them and ask them what doctor they go to.
To all, I think part of the problem (and I have had this problem too) is that we don't always mean what we seem to mean during a sometimes hastily written reply -- or it can be taken the wrong way. Perhaps a little more care in posting could reduce this tendency. Also, there is perhaps a tendency to let one's anger at past situations (like on the MP board) to affect our responses to one another here in the present.
Also, I would like to let you know that I am not part of the MP staff and have independent views on various subjects, but have done some volunteer work, particularly on scientific aspects of the protocol for the Autoimmunity Research Foundation (headed by Dr. Marshall).
I understand Lonestartick's view, but I will still post on Lymenet sometimes, because I do think people should know about all the options and like she said the other options aren't so perfect either.
And with regard to variations on the MP mentioned, I would be interested in hearing what they were and how they worked out. I think that when one breaks the MP rules, one can learn new things. And I hope to learn from people's negative experiences too.
But, I think there is danger in breaking the MP rules, too, so perhaps that is partly why the MP board has what is sometimes called a "censorship" policy that they use sometimes. I do know, though, from searching past posts a great deal, that the vast majority of old posts still remain there and have not been deleted, even when they are not favorable to the MP.
Once again, I repeat, that I tend to favor a lower initial starting dose and a slower approach in severe and/or long term Lyme patients than is currently recommended. So, this might also help someone who is considering trying the MP again, after initially having problems (see http://members.aol.com/SynergyHN/MPjcw.html ).
Best Wishes and With Hopes of some calmer future discussions (generating more light than heat, as they say),
Joyce Waterhouse, Ph.D
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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I hope that you do continue to keep us updated on the MP. No one has all the answers to this awful disease yet, and we have lots to learn and share.
I think that sometimes what comes through as negativity on the board in comments sometimes may just come from a feeling of being discouraged: a feeling of being lonely, scared, tired, depressed, and sometimes just abject hopelessness. If you have been sick with this disease for years and can't seem to find any relief, or even any supportive doctors, and you feel awful and tired....it would be pretty irksome to hear that "method X" (whatever that may be) is the answer, and it didn't work for you because you did it wrong. (If you have spent any time dealing with this healthcare system, you are not a stranger to patient blaming.) Or you can't get your doctor to prescribe "method X" because there is not significant research behind it yet.
Just my humble opinion....from someone who is on a modified version of MP but still very very very discouraged....
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I don't remember exactly. More than 6 months.
Yes, people get castigated here too, but not en mass. What I noticed on the Marshall site was if someone had a genuine question about something about the protocol, they were ganged up on. It was like you weren't allow to ask a question about the blessed protocol. I found it very strange.
There used to be someone here from lymenet (actually, multiple people) that were kicked out of the marshall forum. One of those, as I recall, used to be a moderator. I can only speak to my personal opinion... and I still think the behavior was cultish.
Like I said, there was a lot written about this previously on lymenet so should be available with a search.
If it works for someone... I'm glad. It's definitely not for me though.
quote:Originally posted by Bothrops: hey tequeslady, people get castigated here too. All you have to do is question your lyme dx. Just question the whole "chronic lyme" theory. I think this sort of behavior is everywhere.
Everyone thinks they are right, they are even smarter than all there docs, except the llmd or the FFC's docs.
posted
Yup...this is the kind of poor behavior from the moderators that I saw from the marshall forum.
It's ridiculous that Jellybelly was treated like this.
Furthermore, it sounds like they were WRONG, but were too busy defending their protocol to see it. The concern was not placed correctly. It should have been more to the effect it was having on the patient, instead of pledging allegiance to the all mighty protocol.
Just my opinion...
quote:Originally posted by Jellybelly:
The real problem is that Mr. Marshall refuses to acknowledge that. I asked that question over and over about low BP and I was treated like I was too stupid to ask questions or even understand his replys. When I did find out about my adrenal insufficency and I asked about it on the board, this is the reply I got. I saved it.
"Jelly,
Your post about Benicar and adrenal insuffiency has been moved off the public message board because the discussion has deteriorated into a pointless argument. (There were about 3 or 4 replys, not making for an arguement) We have a huge cohort of recovering patients who are following the MP as it is written, we have carefully described the science of Th1 inflammation and we have nothing to prove to folks like you who cannot or will not accept our explanations.
posted
I have gone to there site off and on for 6 months just reading anything interesting and I have never seen anything that looked the way you desribe. However, I dont doubt your word.
What I dont get is the number of people here who have been on high amounts of abx for years with little change in there symptoms. But they believe, like they believe in god, that there llmd is right and the rest of the medical world is wrong.
I dont have that problem, im atheist. I would try the MP just as I would try rife. I can see that my llmd is not working. It has been a year, 6 months longer than you tried the MP, and I have felt nothing! What they are calling a herx, I call a real bad day and I had plenty before I started abx.
So how long have you been seeing your llmd? Can you tell me what makes his way better than the mp. If anyone could prove to me that the MP is more dangerous than your everyday llmd than I would think twice. I will not just hang it up because of some rude posters on a website.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by tequeslady: There used to be someone here from lymenet (actually, multiple people) that were kicked out of the marshall forum. One of those, as I recall, used to be a moderator. I can only speak to my personal opinion... and I still think the behavior was cultish.
Like I said, there was a lot written about this previously on lymenet so should be available with a search.
[/QUOTE]
Here's the link to the topic from last year which you have in mind. It explains how/why Paula Carnes was banned for trying to help a pediatric Lyme patient who was in serious trouble and who needed IV fluids in the ER.
I saw the handwriting on the wall and knew that he would ban me next for sticking up for Lyme patients so I left the MP website of my own volition before he had a chance to do the same thing to me.
Trevor is a brilliant scientist, but his skills in social leadership are sorely lacking. He admires philosophers like Machaivelli and believes in the adage of "rule by fear". After I recognized that, then I knew that I did not want to be part of that team any longer, but I stuck it out until after the Chicago conference because I was part of the program planning committee.
It is going to be up to the doctors to make the MP work for their patients by modifying it when necessary for individual patients. I'm confident that the doctors will be capable of doing so eventually, after they have a chance to become more familiar and have more experience with the MP program.
I only hope and pray that Trevor can learn to develop a better understanding of group dynamics and a better style of social leadership because he can be his own worst enemy at times. It hurt me deeply to watch so many Lymies and CFIDS patients falling through the cracks for lack of the right kind of advice and adequate support and encouragement at the MP website.
The good news is that the atmosphere at the MP website is starting to improve now -- albeit very s-l-o-w-l-y -- and the MP website is starting to offer a more welcoming atmosphere, thanks to so many successful fellow MPers who post encouraging notes to newbies nowadays. I'm glad to see that positive change in atmosphere and I applaude it.
Likewise, I am very happy to work privately with persons who have a sincere interest in pursuing the MP program or in considering whether to pursue it, but I find it much more productive to do so on an individual basis than in any of the open forums. It is more efficient for me time-wise and also I don't like spending a lot of time at the computer nowadays in order to participate in the various internet forums. EMs (e-mails) are much more convenient for me than PMs via either website though. My personal e-mail address is: [email protected]
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Bothrops: You're missing the point- It's not that the people on Lyme.net think their LLMDs are gods and there is no other therapy other than long term high dose abx - most people on Lyme net are the non-responders- in for the long haul without clear cut results from numerous therapies. on the contrary - protocols, antibiotics, and supplements are all discussed - pros and cons. ALot of ALT therapies are also discussed (just ask Brian about Rife - he's taken some critism and survived it)
The problem with the 'other' site we're talking about is that it CAN'T be talked about in an open fashion for fear of real-life law suits..(and there have been some) and the other complaints are that people (while on the list) were chastised and belittled for either asking questions or reporting less that stellar results, then banned if they didn't head the warnings.
I could re-post a few of the old nasty replies I got complete with expletives from that group - but I won't...
IMO, there are aspects of this protocol that probably have promise - and that WOULD benefit some people - but it's so mired with secrecy, power & blind loyality(yes cultish) that it's now impossible to separate the wheat from the chaff.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
I feel the MP is not for everyone as already has been stated but it does hold much promise for some. I work with 2 Dr's and one has about 200 patients on the MP and her practice is constantly expanding.
If the protocol wasn't working she wouldn't have to be adding to her staff to keep up with all the patients.
She became a believer in it when she overcame CFS from a mycoplasma infection with the MP.
I also should state that she doesn't encourage patients to go to the MP site for advice. Many of us are aware of the past history of the site.
For those of who can tolerate benicar it can be challenging to stay on it as it takes longer for Lyme patients to recover then the sarc patients.
I hope there will always be open discussions about the MP on the site as everyone seems to be going differnt paths to recovery and its good to hear what works for some. Jar
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
I was asked in a private message to explain more about some of the changes made in the MP that have helped people on it (in particular, dealing with Herxing) and decided I would post the answer here, in case others are interested. It may be difficult to do effectively, since one needs to be familiar with the MP to really understand thoroughly, but I will do my best.
The biggest area in which changes have occurred over the last 1 to 2 years has to do with managing very strong Herxheimer reactions more effectively. The MP rarely has a problem eliciting Herx. This seems to be because the MP is more effective at killing bacteria even at low doses of antibiotics due to the immune modulation it uses (Benicar and lowering vitamin D, see http://members.aol.com/SynergyHN/transcript.html ).
And there are sometimes cases where the immune system seems to get ``turned on'' and it takes some time for it to ``turn off.'' This is sometimes called a perma herx or runaway Herx, where the immune system just keep killing bacteria, even if one stops the antibiotics. I don't know of anyone for which the Herx was really permanent, but it might occasionally take quite a while for it to stop the bacterial killing that is causing the Herx. I think the approach of going very slowly that I discuss (even starting at lower minocycline doses) is likely to help avoid this situation in most people.
The main newer options for managing Herx are at the sites listed below, but I will also summarize them very briefly. Mostly, they are ways of individualizing the protocol, since it appears that people's immune states and types of bacteria and bacterial load differ a lot, so that different things work for different people.
Of course, one needs to read the Phase One pdf, but the basic idea is that once adequate Benicar and vitamin D and light avoidance is established, one adds low doses of minocycline every other day, and then when Herxing at a particular dose has waned, the dose is increased (usually it goes from 25 to 50 to 75 to 100 mg minocycline over several months).
The newest alteration, I already mentioned, is using a lower dose of Benicar (others do better when they raise the Benicar dose).
One can also extend the cycle length (time between doses of antibiotics). For one antibiotic in Phase Two and Three, the cycle length used to be 8 days and now it is 10 days and people are encouraged to use longer cycle lengths if the Herx is still going at the end of 10 days.
There is now a modified Phase Two, which uses an antibiotic that stays in the body a shorter length of time. One usually takes it every 2 days, but now it is recognized that some people do better if it is taken every 3 or 4 days or even longer.
There are lower starting doses available for most of the antibiotics. And when a new antibiotic is added in Phase Two or Phase Three, it is now recommended to lower the other antibiotics (I think preferably to the lowest starting dose for each).
One Phase Two antibiotic can now be started at 1/16 of a tablet (or sometimes using an even lower level) vs higher previous starting levels. And others can be started at lower levels too.
Minocycline has well documented anti inflammatory effects and it has been found that for some people, taking the minocycline doses more frequently actually turns down the Herx reaction and bacterial killing. The reason pulsed doses are used usually in the MP is that they are more effective at killing bacteria and producing Herx. So, conversely, if Herxing too much, many people find that taking the more constant doses (e.g. 25 mg daily or every 12 hours) gives less Herx than 25 mg every other day. However, this approach does not work for all.
Now, some people who find they start Herxing strongly on Benicar or who are Herxing too strongly already due to a past treatment or just in general are started right off on the more frequent dosing of minocycline to get the advantage of the anti inflammatory effect and then they gradually work toward alternate day dosing, as tolerated.
I have mentioned before that I disagree with the current MP stance that one should never start at doses less than 25 mg for minocycline. I think for many people, especially long term or severe CFS or Lyme, this may work best (see http://members.aol.com/SynergyHN/MPjcw.html ). More data will be needed to verify this, but I know quite a few people who did well using this approach (though not all).
Quercitin is also found by some people to help relieve or reduce Herx symptoms and you can read about it at the link below (at the ABCs of the MP link).
A few people find that they are helped by raising the dose of antibiotic a little when their Herx is too strong or has changed its character.
Some people alternate between doses (e.g. 25 and 50 mg on alternate days) and find it easier, if they can't handle 50 mg each time. I personally feel in this case, they would do better using 3/8 or 37.5 mg of minocycline (as I did), but this is not part of the MP currently.
There are probably some other refinements I have missed. And I should emphasize that anyone who plans to try the MP, should thoroughly study the Required Reading first. I don't name Phase Two or Three antibiotics because we are asked not to in order to protect patients, since the Herxing can be so strong if they are used incorrectly. Doctors can obtain the information anytime and patients can do so, after completing Phase One. Here are some relevant links, where you can read about more on these options:
I won't go much into the discussion of the MP web site as discussed above. I would just say that the staff are all volunteers and don't have a lot of time to get into a lot of prolonged discussions with people-- it is hard enough for them to keep up with helping the people who want to do the MP and doing other necessary things. It is easier now for them to manage things with less frustration since so many past discussions and answers to questions have been put into FAQs, and they can refer people to them.
But anyway, I don't want people to take my word for it. If they are interested in the MP, they should spend as much time as they can doing the required reading and also reading the day-to-day posts and judge for themselves if this is something they want to try. And they can see what they think of the interactions among people at the MP board at http://marshallprotocol.com .
I don't defend everything that has ever occurred there, by any means. But I do think many patients can still benefit from the MP, as well as reading and posting on the MP web site. I think you can tell from the newsletters I write (http://members.aol.com/SynergyHN ) and my posts that I don't blindly accept everything, and I write about other approaches too. I realize that Dr. Marshall and the MP staff don't have all the answers to all questions about the Marshall Protocol or Lyme Disease, but no one does -- there is much yet to be learned.
posted
this is a very interesting discussion, thank you all for your insights. i started on the 40 mg benicar x6 hours a week ago, and immediately got horrible side effects -- weakness, headache, dizziness, numbness in arms. i lowered the dose to 20 mg x 6-8 hours and symptoms have improved a bit. i'm going to try lowering it again tomorrow to 10 mg x 6-8 hours, but may give it up at this rate. i'm avoiding vit D and major sun exposure but i'm not doing the cave thing, as this sounds crazy to me (and my doc, who warned me the MP site was looney and not to take it too seriously).
my question: have folks benefited from low dose minocycline w/o benicar? i have the mino in hand, but haven't yet added it. i'd feel safer using antibiotics w/o benicar, which has not been on the market long enough for me to feel comfortable using it.
i also had good results w/sublingual heparin. someone above mentioned it affects A receptors as well -- does anyone have more info on this, a pubmed citation perhaps?
thanks!
Posts: 2 | From California | Registered: Feb 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Article "Heparin and Heparan Sulfate Block Angiotensin IIInduced Hypertrophy in Cultured Neonatal Rat Cardiomyocytes"
posted
Lanya, I suggest you add sea salt and water to your protocol to increase your blood pressure. This may help with your symptoms. TX Lyme Mom might have some more tips for you as she knows the protocol inside and out.
Jar
Posts: 805 | From Utopia | Registered: Feb 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by lanya: ...i'm avoiding vit D and major sun exposure but i'm not doing the cave thing, as this sounds crazy to me (and my doc, who warned me the MP site was looney and not to take it too seriously).
my question: have folks benefited from low dose minocycline w/o benicar? i have the mino in hand, but haven't yet added it. i'd feel safer using antibiotics w/o benicar, which has not been on the market long enough for me to feel comfortable using it.
Lanya, Yes, there is at least one RA patient who reported that s/he (don't recall now whether male or female) had not had any luck at all following the older Brown AP program, which uses only low-dose, pulsed antibiotics without Benicar, since Benicar wasn't on the market when Dr. Brown was still alive. However, when s/he started avoiding dietary D and excess sunlight, Voila!...the low-dose pulsed antibiotics started to kick in and yielded noticeable results. (Info on the Brown AP program can be found at two websites, links below):
Nevertheless, based on our daughter's experience and also upon the experience of many other MPers who do use Benicar, the addition of Benicar potentiates the effect of the antibiotics many-fold. Benicar also causes you to become much more sensitive to the effects of excess sunlight. We experimented with this effect just a little bit in our family too, in the very beginning, so I can say without any shadow of doubt that this effect is indeed very real.
After close observation, we have come to recognize that several members of our family have sun sensitivities, to greater or lesser degrees, even without the addition of Benicar. However, these effects are often delayed in time enough that unless you are well-informed about this effect and are observing for it very closely, you will probably miss seeing the connection.
This effect can be both subtle and can have up to a 24-hr. time delay so it's very easy to miss being able to recognize it unless you know to watch for the delayed effect several hours later or perhaps even not until the next day after the sun exposure. We did this little experiment before anyone in our family had started the MP while on a family holiday weekend at the lake over the July 4th weekend of 2004.
This was how we came to realize that more than one member of our immediate family, besides our daughter, was a potential candidate for the MP. Now two members of the family are on the MP, but not the third, who would never be willing or able to comply with the lifestyle restrictions.
Nevermind that though because this third person is much older and will probably outlive his problems, but if he attempted to do the MP, he'd have to retire first in order to be able to do it successfully because we know what it entails. He's much happier living with his problems for the rest of his life than he would be in tyring to treat them. That's why I say, as I've said many times before already, that the MP is definitely not for everyone.
Therefore, my personal advice to you (as an experienced MP caregiver) is not to disregard the light restrictions and lifestyle nor take them too lightly. That would be a huge mistake and could lead to some very, very serious Herx problems -- not the least of which would be severe cardiac problems if your heart happens to be one of the target organs involved in your disease.
Not everyone has cardiac stuff going on of course, but many Lymies do because Bb can hit the heart, so please don't take the lifestyle restrictions lightly. If you decide to do the MP, then do it strictly as recommended....or else, don't do it at all. I'd hate to see you or anyone else run into serious problems by flaunting the lifestyle while attempting to do the MP.
BTW, a full blockade with Benicar is important for doing the MP properly. I don't know of anyone who has been able to succeed with the MP without using at least 120-160 mg of Benicar daily, in 3-4 divided dosages of 40 mg. I'm not sure about the lower dosages which are being recommended, unless that is for the sake of a smoother,more gradual transition onto the full MP program.
It is my understanding that if someone is having great difficulty getting adjusted to Benicar, then this is probably a sign of a very high 1,25-D level at baseline. You didn't say if you had had your D-metabolites tested at baseline. It's a good idea to do this, if at all possible, because this can be a good predictor of who might run into the most trouble while adjusting to the MP program.
For example, the person in our family who did not have unusually high D-metabolite levels at baseline has been able to continue working a full schedule while doing the MP. He is also able to "get by" with less strict light avoidance measures, since it is impossible for him to avoid all light exposures at work.
It is taking him somewhat longer, though, to progress through the various phases of the program, and he is adjusting his antibiotic dosages accordingly. He is also using extra Benicar during the work week by increasing his Benicar dosage to every 4 hrs. on Mon.-Fri. because of his extra light exposures at work and then going back to the regular 6 hr. dosage schedule on the weekends at home.
Therefore, if you are experiencing as many symptoms as you have reported during the initial adjustment period to Benicar, I'm guessing that your 1,25-D level must be pretty high. The MP program might not be a good option for you at this time in your life unless you are able to comply with the lifestyle restrictions. YMMV though, since I don't really know enough about you to say for sure if this might be your situation or not. I'm just guessing, based on the info you've told us about yourself so far.
My main point though is either do the MP correctly or else don't do it at all. Don't make the mistake of trying to reinvent the wheel, because the MP can get you into a whole lot of trouble unless you take it seriously and unless you comprehend the necessity and importance of the lifestyle restrictions, no matter how inconvenient or questionable they may seem at first glance.
A lot of folks have already hopped down this same bunny trail ahead of you, and many of them got tangled up badly in the bramble bushes because of their foolish mistake of disregarding the importance of the MP lifestyle, including strict cave-dwelling for those who are the very sickest when they first start out on the program.
The good news is that one's light sensitivities do finally begin to diminish over time, so the necessity for cave-dwelling isn't a forever thing. Eventually, you can expect to be able to become a lot less strict with the light avoidance aspect of the MP -- but certainly not at first, during Phase One, nor the early months of Phase Two.
Maybe after about a year or two though, then you'll be able to get by with a somewhat less restrictive lifestyle.... unless you are one of the lucky ones whose disease process isn't too far advanced and whose D-levels at baseline aren't really too bad.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
thanks for the info, jarjar and jellybelly. very useful!
thanks for the light warnings, txmom, i'll consider the possibility of a delayed reaction. my vit d levels are not extremely high (1,25=26 & 25D=14). it could also very well be that benicar simply has other side effects for me (as most drugs do -- and seemingly benicar is among the worst offenders for this, see www.iddb.org reports on it).
what i think is essential in any treatment is to pay respectiveful attention to what your body is telling you and listen to it rather than blindly following a protocol. what i find discouraging about the MP is how peoples' own observations about their conditions are often minimized, in favor of a theoretical model. let's face it, models work on paper but often not in reality. our situations can be quite varied and adjusting medical protocols with the help of a good doctor and our own body wisdom is the best way to go. for many of us, that will mean using some ideas from the MP without doing it to the letter.
Posts: 2 | From California | Registered: Feb 2006
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I'm not sure, but I think I am the longest-posting Lymie on the MP website. I began avoiding sun and Vitamin D in fall 2004, and began the full MP 11/04.
I'm now in Phase 3. It's been really rough, but I'm still hanging in there. The herx continues but I still have not missed a day of work due to illness or treatment.
I had the "perma-herx" issues right around the 11 month mark. Never before then. I switched to 20mg Benicar 3x daily, and 40mg at night. It's been a much easier ride since then. Marshall minimized the importance of the reduced Benicar dosage for some people, and there's never been a scientific explanation as to why this works. The important thing is that there are solutions for non-confrontational individuals who have issues and need to work through them.
The light avoidance really sucks, but I've managed to remain very compliant. Last summer was the worst. Try telling your 8 year old the next bike ride together will be when she's 9. My compliance is probably why I have stayed on the MP. Some of the others who have proudly proclaimed themselves MP failures earlier in this thread had obvious sun compliance issues when they were posting on mp.com.
I manage to commute 2-3 hours daily by car, and work in an office with windows, while on MP. I remain covered except for my face, and use the Ketaconazole cream. I am now at a point where I leave my blinds partially open at home, watch TV without sunglasses, and take off my sunglasses while conversing in the office. There appear to be no repercussions. I can now begin to come out of the closet, as it were!
I am still totally convinced by the science behind MP. There will be plenty of fine tuning and new scientific discoveries in the next decade. Those of you who are uncomfortable with uncertainty in your medical treatments should stay on the sidelines till then.
My mental faculties have improved. My IBS problems are significantly improved. I no longer fly into a Lyme Rage at the drop of a hat. I began lifting weights again last month.
My leg fatigue, coordination, and stamina have not improved, neither have my restless legs. These are the Big Kahuna for me. At the low point of my herx cycles, however, I can now stand comfortably for 20 minutes at a time, walk through a "big box" store, etc. This is progress.
And, I'm taking my first vacation in 2.5 years next week - 4 days in Florida for spring training baseball. I'll be on an abx break then, and I think I'll experience some slight improvement in my leg sx, while not herxing. Stay tuned.
After 18 months, I'm still a believer, and I'm still confident. I'm just really mentally tired, and often depressed. But that's not Marshall's fault, is it? It's Lyme's. Don't shoot the messenger.
Feel free to PM me.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
Thanks so much for posting your experience. I am one of those people that need to sit on the sidelines for now. I tried the mp last spring and only lasted 10 weeks. I was really struggling with how horrible I felt all the time. I couldn't tolerate the benicar and was one of those whose immune system stayed turned on the whole time. I was on a runaway herx for 10 weeks.
The light avoidance for me was very difficult. I felt myself becoming really depressed and it wasn't just because I needed to stay out of the sun-I believe it was due to a combination of light and D avoidance.
I may have stuck it out if the mp board was a little more open and receptive to questions but I was just newly diagnosed at the time and hadn't tried any other protocols. I also asked to be put in touch with other lyme patients that had been on the protocol for a longer period of time and was told these people preferred to remain annonymous.
Diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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posted
Diana, You can usually find people who will discuss a particular diagnosis, like Lyme, on the MP board. If you post a request that they contact you, some usually will. Or you can look for people with Lyme and then send them a private message. Many also do include their emails. You just click on their names. Their profile tells if they have an email address they are sharing and you can also look at their past posts. George in MO posts a lot about his Lyme experiences.
Perhaps the lower Benicar dose that some use now would have worked better for you. Also, for a Lyme patient's experience starting with very low doses, see http://members.aol.com/SynergyHN/MPjcw.html .
NOTE: to the person who sent me a PM recently -- it said your mailbox was full so I couldn't respond. You can email me at [email protected] or send me a new PM to let me know about your mailbox situation.
Joyce Waterhouse, Ph.D.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
Since much of this Update concerns the Marshall Protocol, I'm posting it here. The part near the end regarding acidity and Herx etc.. might be of interest to anyone who is Herxing.
Joyce Waterhouse, Ph.D.
Chronic Illness Support and Research Association (CISRA) CISRA's Synergy Health Newsletter www.members.aol.com/SynergyHN
CISRA Update # 4 --April 24, 2006: Upcoming Los Angeles Conference on Chronic Disease; Vitamin D Book Announcement; Marshall Protocol DVDs; Issue 10 Preview (``Herx'' reduction and acidity, hypoallergenic supplements) by J.C. Waterhouse, Ph.D.
(Disclaimer: This material is intended for information only and is not medical advice. Neither CISRA nor the editor receive funding from any organization, doctor, lab or manufacturer of any medication or associated products.)
Los Angeles Conference on Combating Cell Wall Deficient Bacteria in Chronic Diseases Including Cancer and AIDS (Los Angeles, California, June 17-18, 2006)
A conference for physicians, patients and policymakers is being sponsored by the Autoimmunity Research Foundation and is scheduled for June 17-18 in Los Angeles, California at the LAX Hilton. The conference is entitled "Recovering from Chronic Disease - Sarcoidosis, AIDS and Cancers." and will cover new research on cell wall deficient bacteria, vitamin D, theoretical and practical aspects of the Marshall Protocol and molecular genomics. The Marshall Protocol has been used to treat many chronic Th1 diseases, including autoimmune diseases, Chronic Fatigue Syndrome, Fibromyalgia and Lyme Disease (``Th1 diseases'' are so called because Interferon Gamma is thought to be dominant in inflamed tissues, even though blood levels may not be elevated).
The Keynote Speaker will be Alan Cantwell, Jr, M.D., who will discuss the role of cell wall deficient (L form) bacteria in AIDS and Cancer. His distinguished 40 year career has included research on cell wall deficient bacteria in many different diseases.
Trevor Marshall, PhD, will speak on several topics, including antibiotic resistance, molecular genomics in the pathogenesis of chronic Th1 disease, and the role of cell wall deficient (CWD) bacteria as a factor in AIDS. Greg Blaney, M.D. will discuss symptoms of Th1 diseases and their response to treatment. Since Vitamin D reduction is a key component of the Marshall Protocol, J.C. Waterhouse, Ph.D. will discuss new research on vitamin D to be published soon in a new book (see below), as well as more recent, unpublished research on vitamin D.
John McDonald, B.S., an expert on optical instruments will discuss practical microscopy in relation to detection of CWD bacteria. Meg Mangin, R.N. will discuss study design and Belinda Fenter, B.S., and a panel will discuss some practical issues relating to the Marshall Protocol. Case histories of patients on the Marshall Protocol will also be presented.
For more information on registration, speakers and conference details, see http://AutoimmunityResearch.org/lax2006.htm (registration fee is $95 before May 22 and $115 thereafter). If you consult the above link before April 30, double check it again about a week later to see if there are any updates. If you prefer, you may register by mail. You may send your name, address, phone and email address and a check to the Autoimmunity Research Foundation, 3423 Hill Canyon Ave, Thousand Oaks, CA 91360. **Note: Experience indicates that the Marshall Protocol (MP) must be studied and followed carefully in order to be effective and avoid possibly serious consequences from bacterial die-off reactions due to enhanced antibiotic effectiveness even at very low doses (for free assistance, go to http://Autoimmunityresearch.org , http://marshallprotocol.com or http://sarcinfo.com ).
DVDs Available
A set of DVDs from the 2005 Conference in Chicago may be obtained from the Autoimmunity Research Foundation ( http://AutoimmunityResearch.org or above address) for a $35 suggested donation (see web site for version for Health Professionals). For a suggested $15 donation , a DVD of Dr. Marshall's presentation for the FDA's ``Visiting Professor'' program may be obtained (Marshall TG: Molecular genomics offers new insight into the exact mechanism of action of common drugs - ARBs, Statins, and Corticosteroids. FDA CDER Visiting Professor presentation, FDA Biosciences Library, Accession QH447.M27 2006.)
Announcement: Revolutionary Vitamin D Information to be Published in a New Book (Projected Publication Date: May 31, 2006)
Dr. Trevor Marshall was invited by Nova Science Publishers to contribute a chapter covering his work on Vitamin D in chronic disease for the book, Vitamin D: New Research (see below). Dr. Marshall's new research on Vitamin D is challenging many of the commonly held beliefs about this so-called ``vitamin,'' which plays a crucial role in immune function. In some circumstances, Vitamin D may act more like a steroid immunosuppressant than a vitamin, allowing harmful cell wall deficient bacteria to increase. Dr. Marshall finds this can occur at levels many assume are safe. Reduction in Vitamin D is a key part of the Marshall Protocol (see Conference Announcement above).
However, it should be noted that there will be much additional information on Vitamin D that has never been published before that will be included in this new book chapter (some of the research from the book chapter and even some newer information will be presented at the Los Angeles conference, June 17-18, 2006, announced above).
The book chapter written on Dr. Marshall's Vitamin D research is entitled: ``High levels of active 1,25-dihydroxyvitamin D despite low levels of the 25-hydroxyvitamin D precursor - implications of dysregulated vitamin D for diagnosis and treatment of chronic disease,'' by Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G, In Vitamin D: New Research, New York: Nova Science Publishers; in press.
(Note: No royalties or other proceeds from the sale of this book are being paid to the contributing authors of this book chapter.)
The projected publication date for this book is May 31, 2006 and there is a pre publication discount of 40% for those who order it in time (orders may be done quickly by emailing the publisher at: [email protected] ). The publisher can also be reached at: Nova Science Publishers, Inc, 400 Oser Ave., Suite 1600, Hauppauge NY 11788-3619, Phone: (631)231-7269, Fax: (631)231-8175.
To help achieve a wide availability of this book through interlibrary loan, some people are contacting medical libraries to suggest they order it. Some people have also purchased the book to donate to a medical library in their state. A list of medical libraries can be accessed online at: http://www.lib.uiowa.edu/hardin/hslibs.html .
Preview of Issue 10 of CISRA's Synergy Health Newsletter:
Excess Acidity and Bacterial Die off Symptoms
Some patients have reported increased acidity in response to bacterial die off reactions (Jarisch-Herxheimer Reactions or ``Herx'') using antibacterial protocols like the Marshall Protocol. Several patients have reported ( http://marshallprotocol.com/forum11/5733.html ) that when their symptoms reached their worst, their urinary pH was more acidic (e.g., less than 5.8) when they measured it with pH tape purchased from a health food store. They reported that small amounts of baking soda (sodium bicarbonate -- 1/4 to 1/2 teaspoon) both normalized their urine pH to the 6.0 to 7.0 range and partially relieved some of the symptoms associated with bacterial die off.
Other options to reduce excessive acidity (or alkalinize) include Milk of Magnesia and certain other types of magnesium (like magnesium citrate). Milk of Magnesia can be a laxative, so if one wants to avoid that effect, other antacids can be used, like baking soda or Tums (calcium carbonate). Those on the Marshall Protocol should avoid alkalinizing substances that contain potassium (e.g., certain ``green'' drinks or Alka Selzer Gold), since the Benicar used in the Marshall Protocol can increase potassium retention, which can occasionally lead to elevated levels. Calcium and magnesium should not be taken within 2 hours of taking certain antibiotics, like minocycline.
One should not use baking soda without a doctor's permission if one is on a sodium restrictive diet for conditions such as high blood pressure. One should also avoid alkalinizing too much, since some people seem to become more prone to urinary tract infections or overgrowth of Candida in the colon if they alkalinize too much by taking too much antacid.
One should still be cautious about keeping the rate of bacterial die off at a moderate level, but for at least some people, reduction of excess acidity may be a helpful tool to use now and then to reduce bacterial die off symptoms. Some of the symptoms reduced in some anecdotal reports include shortness of breath, lightheadedness, abnormal cardiac sensations, weakness, pain and emotional symptoms like anger or irritability. Alkalinizing substances have also sometimes been used to help relieve symptoms of allergy/sensitivity reactions. (The above information provides preliminary observations only.)
In an article in Issue 9 of CISRA's Synergy Health Newsletter, a list of hypoallergenic supplements that are free of Vitamin D was provided for those who's dietary restrictions do not allow adequate nutrient levels. Since publication, it appears that the KAL Magnesium Glycinate that was listed may be more allergenic for some people than originally thought due to the use of cellulose derived from birch trees. People may differ in their reactons and so one can use symptoms or a test like the pulse test to help determine which supplement is least allergenic in a particular case (note: sensitivity levels may increase over time with consumption of a food or supplement). See the article from Issue 5 for an overview of allergies/sensitivities and the pulse test ( http://members.aol.com/SynergyHN/allergy22a.html ).
Two alternative magnesium supplements that appear to be less allergenic are: Solgar Chelated Magnesium and Tyler Magnesium Glycinate Plus
Editor's Note: I have recently become affiliated with the Autoimmunity Research Foundation (ARF). I am doing some reviewing of the literature and writing on subjects related to the role of cell wall deficient bacterial forms, vitamin D dysregulation and the antibiotic approach being used to treat a variety of autoimmune and inflammatory diseases (aka the Marshall Protocol). I am doing this on a voluntary basis because of the benefit I have received from being on the Marshall Protocol and there is no financial connection involved. Opinions I express in CISRA's Synergy Health Newsletter are still my own, and not that of the ARF or Dr. Marshall, unless indicated otherwise. I will also continue my independent inquiries, research and writing for CISRA on a variety of topics that I believe may benefit patients with chronic disease.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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I just wanted to mention an update regarding the Los Angeles Conference (June 17-18) on the Marshall Protocol and the role of Cell Wall Deficient Bacteria in a variey of Diseases:
A New Speaker: Professor Yoshinobu Eishi, MD, DMSc, PhD, of the Tokyo Medical and Dental University, arguably the pre-eminent Sarcoidosis researcher in Japan, is now to speak at the conference. He will deliver a presentation describing his own 26 years of research into the bacterial pathogenesis of Sarcoidosis.
Many of us view Lyme Disease and many other autoimmune diseases, like sarcoidosis, as very similar in nature, involving a mixture of species of bacteria (with one species facilitating the acquisition of additional species). In fact, some Chinese studies found Lyme spirochetes in most sarcoidosis patients.
Also, I thought I would mention that the deadline for receiving the lower registration fee for the conference is coming up soon, on Monday, May 22. However, people can register after that date (but the fee for the 2 day conference goes up $20).
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