posted
My LLMD does not believe 50mg of Minocin,every other day,is sufficient for lyme patients. Anyone else receiving this feedback from their docs? Posts: 1 | From Newport News,VA USA | Registered: Dec 2004
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posted
Your LLMD is wrong. Mine was too. That's why I found a Marshall Protocol doc, and dumped the LLMD.
I never herxed in 5 months on my LLMD's high doses of Omnicef, Minocycline and Zithromax.
Now I have been herxing for the last 3+ months on much lower doses of the same drugs. The difference is the addition of Benicar, and the total avoidance of Vitamin D called for by MP. www.marshallprotocol.com
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by valady: My LLMD does not believe 50mg of Minocin,every other day,is sufficient for lyme patients. Anyone else receiving this feedback from their docs?
Hi Iam with your LLMD on that The jury's still out on the "Marshall Protocol" at least thats my opinion
posted
Yes, the jury is still out. But any competent judge would have declared a mistrial by now.
The mp.com site is a fountain of dubious information. Efforts to post relevant research, without editorial comment, result in posts being deleted and members being banned.
Those who tried the protocol and fared poorly are not allowed to say so, creating the false impression that everyone who tries this benefits.
Key claims on which the protocol is based are either lacking independent confirmation or directly contradicted by current medical science.
Among the items I have tried to post, which have been deleted from mp.com:
Studies showing that in laboratory experiments the active form of vitamin D prevents Lyme arthritis;
Papers from leading researchers on vitamin D like DeLuca showing that it actually enhances resistance to bacteria and cancer;
Studies showing that Angiotensin II Receptor Blockers (ARBS) retard macrophage function and impede bacterocidal activity, and corresponding studies showing that 1,25-D INCREASES bacterocidal activity in infected macrophages.
On the mp.com site, inconvenient facts like these are nowhere to be found. Many of us have been banned for the crime of posting a simple pub med abstract, without any commentary at all. That may not bother true believers, but it bothers the hell out of me.
I can't say that no Lyme patient will benefit from the MP. I can tell you, though, that many Lyme patients have tried the MP and found it wanting, and not only are their stories excluded from the site but when they attempt to tell them in other public forums, many have been subjected to threatening emails.
One friend of mine actually had to hire a lawyer to defend against an absurd libel suit Marshall filed against her. The suit was tossed out, of course, but the stress and expense she suffered continue to outrage my sense of fair play.
No matter WHAT treatment you pursue, you want to investigate it as thoroughly as you can, and see if the assumptions it is based on are credible. My LLMD welcomes that - she would never think of punishing me for asking questions.
Marshall, by contrast, routinely resorts to bullying and intimidation when his views are challenged, a fact others here have alluded to more than once.
ILADS-style Lyme treatment is not always successful, and when it is often has to be modified to fit the particular requirements of the patient. However, one can find many peer-reviewed studies in which serious, specific symptoms and impairments were reversed using these methods. Yes, some of those patients no doubt relapsed, but others remain well.
There is no comparable evidence of the MP's efficacy. Most Lyme patients who have attempted the MP have had EXTENSIVE prior antibiotic treatment, and report symptoms that are (comparatively) mild or already much improved when they begin it. Yet few MP enthusiasts acknowledge this.
I am glad for those who embrace this protocol and do well on it, but I am frankly a little tired of hearing it's praises sung as if those positive experiences were the only experiences that matter.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by paulscha: Yes, the jury is still out. But any competent judge would have declared a mistrial by now.
The mp.com site is a fountain of dubious information. Efforts to post relevant research, without editorial comment, result in posts being deleted and members being banned.
Those who tried the protocol and fared poorly are not allowed to say so, creating the false impression that everyone who tries this benefits.
Key claims on which the protocol is based are either lacking independent confirmation or directly contradicted by current medical science.
Among the items I have tried to post, which have been deleted from mp.com:
Studies showing that in laboratory experiments the active form of vitamin D prevents Lyme arthritis;
Papers from leading researchers on vitamin D like DeLuca showing that it actually enhances resistance to bacteria and cancer;
Studies showing that Angiotensin II Receptor Blockers (ARBS) retard macrophage function and impede bacterocidal activity, and corresponding studies showing that 1,25-D INCREASES bacterocidal activity in infected macrophages.
On the mp.com site, inconvenient facts like these are nowhere to be found. Many of us have been banned for the crime of posting a simple pub med abstract, without any commentary at all. That may not bother true believers, but it bothers the hell out of me.
I can't say that no Lyme patient will benefit from the MP. I can tell you, though, that many Lyme patients have tried the MP and found it wanting, and not only are their stories excluded from the site but when they attempt to tell them in other public forums, many have been subjected to threatening emails.
One friend of mine actually had to hire a lawyer to defend against an absurd libel suit Marshall filed against her. The suit was tossed out, of course, but the stress and expense she suffered continue to outrage my sense of fair play.
No matter WHAT treatment you pursue, you want to investigate it as thoroughly as you can, and see if the assumptions it is based on are credible. My LLMD welcomes that - she would never think of punishing me for asking questions.
Marshall, by contrast, routinely resorts to bullying and intimidation when his views are challenged, a fact others here have alluded to more than once.
ILADS-style Lyme treatment is not always successful, and when it is often has to be modified to fit the particular requirements of the patient. However, one can find many peer-reviewed studies in which serious, specific symptoms and impairments were reversed using these methods. Yes, some of those patients no doubt relapsed, but others remain well.
There is no comparable evidence of the MP's efficacy. Most Lyme patients who have attempted the MP have had EXTENSIVE prior antibiotic treatment, and report symptoms that are (comparatively) mild or already much improved when they begin it. Yet few MP enthusiasts acknowledge this.
I am glad for those who embrace this protocol and do well on it, but I am frankly a little tired of hearing it's praises sung as if those positive experiences were the only experiences that matter.
Interesting
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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posted
In answer to your question, I'm seeing a Lyme friendly doctor who is thrilled with my progress on the MP. He has had Sarc patient whose life was saved by the MP.
I have found the 100mg of Minocin every other day to be a powerful combination with the Benicar Since I've begun phase 2, I've really seen a lot of progress. When I first began, I had to start out at 25mg of Minocin every other day and work up to the full 100mg.
That aside, Paulsha is one of the reasons I no longer participate at the MP forum. They banned him unfairly. I can't stand seeing good topics disappear. They repeatedly shut down anyone who tries to discuss information, and they get rid of anyone who tries to speak up against the unfriendly dictatorship that exists there.
I believe in the MP because I am living it, but they would probably view me as an enemy simply because I think the heavy-handed censorship and their shabby treatment of patients is wrong. This is a very promising therapy, and it pains me to see that the attitude at the MP forum has made it so unpopular.
posted
The Mp eliminated all of my sympyoms, in 6-7 months.My wife has improved, in 3 months greatly. I believe in it......I thought I was totally cured, was playing Handball, no sun... and doing great. A month ago I hurt my back playing Handball. MRI showed herniated disc and a tear. I was on vicadin and mucles relaxer, so stopped the MP. Only symptoms that retuturned was psorisis and yeast got worse. I started back on the MP a few days ago, I herxed for two days, today fine. I was suprised, guess I still had some keetes. Mp says do for a year or two then, do periodically. Marshall is very much like an o0ld professor, I had no tolerance for what he thought was a stupid question, he said, go read the book and then ask me your questions. He has liitle tact,,,,but he has been right on, for me and my wife. Most failures, I think are because they do not follw exactly, no sun or they just can not get throu the herxes.I had some tough herxes on very low antibiotics, then went away. everyone is different. The MP is a good protocol to consider.
Posts: 512 | From Memlo Park, Ca USA | Registered: Sep 2002
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quote:Originally posted by theskyking: Taking Benicar with antibiotics renders the antibiotics MANY times more effective.
Why is this considered a "fact" even though there have been numerous accounts of people taking full dose antibiotics with Benicar and having no negative side effects whatsoever? Why don't the FDA warnings include this so called "potentiating" effect of Benicar, if it's in fact true?
See, this is a big problem with this whole thing. Not enough scientific evidence, so rumor and unsubstantiated claims become the party line, part and parcel of the growing mythology that surrounds this protocol.
I'm still benefitting a lot from Benicar, but there are a lot of questions that need to be answered before this can be claimed as some kind of cure-all.
penny
Posts: 142 | From San Diego California | Registered: Apr 2004
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quote:Originally posted by Semper Fi: ...eliminated all of my sympyoms, in 6-7 months.My wife has improved, in 3 months greatly. I believe in it......
Ron, I'm totally exasperated. I just can't understand you. First of all, the protocol is not designed to "cure" anything in 6 months time (let alone the first few weeks, as you were already proclaiming way back in the beginning). So I don't get it. Are you saying you didn't really have lyme disease to begin with????
Also, I'd really like to know exactly who these so called "consultants" are who you are always claiming "verified" this protocol for you when any number of scientists and doctors beg to differ. Scientists can hardly agree with each other, let alone deem a new, still evolving, experimental protocol as "sound" when there are no clinical trials to back that up.
Even the experimental nature of it is okay with me, if it weren't for the fact that people can't even objectively assess or discuss the anecdotal evidence, since open discussion is continuously being censored and thwarted at every turn, and negative reports are deleted. Have you noticed that the Infection & Inflammation yahoo group, where intelligent discussion was taking place, just up and disappeared? Have you noticed that the majority of the moderators at the website-that-cannot-be-named (for fear of legal action) are now gone? That they've been banned or censored, or stripped of their positions while their posts have been deleted or edited? Do you truly believe that this is the way real science is conducted? That your "consultants" would really condone this as good scientific protocol?
Honestly, I'm completely befuddled by your denial, and with hearing the same old "cure" story of yours, while you completely ignore all evidence to the contrary.
Benicar has tons of potential. Combined with abx, it has even more potential. But that's as far as the story goes for now. No final word on it's overall efficacy or its safety. No perfect cure-all protocol proven yet.
penny
[This message has been edited by pennyhoule (edited 17 March 2005).]
Posts: 142 | From San Diego California | Registered: Apr 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Semper:
Take a look at your quote below... The reason people keep questioning you is because:
looking thru the archives here on Lymenet, and by your own account - you've done heavy long term abx previously, and gone to Italy for Dr/ B's experiemental treatment.. and reported great improvements from those therapies...
So, when you say " the XX therapy eliminated all of my symptoms in 6 or 7 months "...
it's misleading.. especially for new people reading this list, as you're omitting prior therapies that helped you.
Everyone here is extremely glad you're feeling better - but we all just want (an need) the whole story of people's therapies.. not just the last therapy in a long line of many.
Barb
Originally posted by Semper Fi: ...eliminated all of my sympyoms, in 6-7 months.My wife has improved, in 3 months greatly. I believe in it......
posted
I was ust diagnosed and frankly was considering this protocol (and still am) but am worried about the long term effects of Benicar.
There is a site that posts side effects posted by users of Benicar for BP meds. Alot of them describe ongoing kidney problems and out of range kidney function tests. These are NOT Lyme patients. This worries me. You only get one set of kidneys!
Many MP patients complain of Kidney problems. I don't believe this is just a herx.
Chris
Posts: 216 | From Upstate NY | Registered: Oct 2004
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posted
Barb, your right, I only come on this site for a few minutes at a time, and input quickly, then go. Your right I have done every treatment I thought helpful, and then some. I was much better after ICHT, rife Samento but not complete symptom relief. Also, I purseved that I was better than I was, because I was grading it from where I had come. The interesting thing with ICHT was I went negative on Igenex, for 6 months or so, and got to 80% or more, I thought. I think all of the bacteria, in the Blood and in the non-cyst form were killed. But the cysts opened up and reinvected me. That is why, what ever treatment that is used, you must do it for long enough to go through many cycles of bacteria growth. That is why, soon I will add in rife, to the Benicar, this will give me a good chance of eliminateing all the yeast problems, for good. Yes, nothing is that simple, but the MP has gotten the rest of my symptoms, mostly joint pain and sleep problems.
Penny, I'm a mechanical enginneer, my wife is a biologist.She understands the medical stuff, much better than I. But, she is not interested in the internet chat. I hired two research scientists to review the MP, prior to starting it. They would not give their professional opinion, for liability reasons, but I paid them to research it and then give me thier personal opinions, if they were me. I tied to have my Dr. do it but they did not want the liability. I have been blessed with the resources to do this. I would never put my wife on anything that I thought was risky. I was the guiney pig, my wife saw how well I did and finally decided to try it.
It is not my intention to mislead anyone. I believe in this protocol so much that I help many pay for their treatments, because I hate to see people suffer, especially those that can not help themselves. There are no guarantees, in life, all we can do is become educated and do what is best for each one of us.
Along the way I have gotten many blood tests, liver, kidneys, etc. As far as the MP, My wife and I and 4 friends, who are doing well, are not in the data base. This is probably true, for many people. You do not normally hear from the people who get better and move on.We hear from the problem people and disgruntled. My guess is that there is well over 500 people, maybe more who are on the MP.
If you go to the Marshall protocol.com site, you can read about the positive things that have come from the most recent conference. Including a well known Dr who said the MP was a miracle, or something like that.
I know some that have had big problems on the MP, and I'm sad for them. But, there are many who are doing well.
I'm getting ready to re-tire at 57 so I can enjoy, the rest of my life. I do care about you people, but it is getting to be the time for me to be selfish and go enjoy life, I Pray for all of you........God Bless
Posts: 512 | From Memlo Park, Ca USA | Registered: Sep 2002
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