Since Hope deleted her thread and thus useful information about side effects and risks of MP, I'm assembling here some negatives posted on the lymenet thread last year.

In addition, anybody harmed by the MP protocol feel welcome to post on this thread.

I will see if Ken Laassen can or is willing to post his comment again.

Thanks.

Marshall Protocol from Lymenet Discussion in 07

Penny

Regarding my personal experience with Benicar and the MP. I took large doses of Benicar for over 2 years. It reduced my inflammation tremendously but it did not "cure" me. I could not take minocycline because I developed a severe reaction to it as described above. I did take other antibiotics under the supervision of my doc. And I took them at FULL DOSES with no negative effects. Benicar did not "potentiate" the abx, and Benicar did NOT kill any bugs. The ABX I took killed the bugs. Sun & D avoidance did not help me, and the literature does not support the theory that it helps anyone other than Sarc patients. What Benicar DID do, after two years, was make my thigh muscles extremely weak, and my middle a lot thicker. I finally stopped taking it because I was worried about what was happening to my muscles, and how the low bp might be contributing to hypercoagulation factors in chronic infection. I now take other anti-inflammatories with my antimicrobials. I think both are vitally necessary to treat entrenched, chronic infections (hence our yahoo group, Infection And Inflammation). But I do not believe, after much research and personal experience with the MP, that it is a "cure" or that it is even scientifically supported in any meaningful way. The MP has elements that should be investigated, but that research needs to be done by someone who is objective regarding the pros and cons of the drugs involved.

Please be careful. Please do your homework. Don't take anyone's word as truth without researching it for yourself.

Note: Here was Penny’s post on her yahoo group in 2007:

"Paula,

When I was trying to do the MP, the minocycline just about killed me and all I got was "herx, herx, herx"...and..."cut down on the mino, increase the Benicar". I was already on 160mg of benicar a day, and down to almost no mino, and it didn't help at all. It was a terrible reaction. Terrible headaches, vomiting, photosensitivity. That was an extremely scary experience and it was completely ignored by the "experts" at the MP board. I had no choice but to stop the mino and when I recovered enough to research it a bit I found out that pseudotumor cerebri (aka ICH) is a clearly listed side effect of mino and is much more common than people know. To promote that as "herx" is irresponsible and dangerous in my view.

When I stopped the mino out of necessity and switched abx at my doc's bidding, I became a bad guy rogue for not doing the protocol "correctly". When I expressed concern about others who were having severe reactions (one person died, remember?), all my posts were removed ..." ---------------- KelliCa:

Amy wrote:

"There's a ton of personal grudges influencing these comments.

None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on."

Amy, I know you're probably scared to read of any negative consequences resulting from the MP, since you're currently in the midst of trying the protocol.

But to completely negate other's legitimate experiences -- that in some cases nearly cost them their lives -- by saying that these are just 'personal grudges' is quite insulting, however unintentional.

And just because they took place several years ago doesn't make them any less relevant. I'm sure you wouldn't suggest that people just forget the Holocaust for similar reasons.

I personally know 3 people from our small support group who had to stop the MP due to severe kidney and/or hypotensive issues. One woman nearly lost her kidney function. And she was following the protocol to the "T". It took nearly 8 months to recover her kidney function.

I'm sure you feel you're doing the right thing and have obviously put a lot of work into your site. I would humbly suggest however, that you include more cautions and actually report some of these negative concerns and/or risks on your page, to protect yourself by telling the full story. Reading these 'negative' stories on this board may actually be a good thing, in the long run.

Perhaps you could ask others at the MP group if anyone has stopped taking the MP drugs. If they have, and they're still doing fantastic, then perhaps the word "cure" is appropriate for them.

But since you use the word "cure" in this thread, let me ask you directly -- can you name one person that has been cured by the MP protocol (i.e. off all drugs and still doing great)?

Best,

Kelli

Second Post by Kelli in answer to Amy:

You said...

"From the perspective of the MP, those patients you mention are not seen as treatment failures."

Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".

"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."

First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.

Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.

You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.

Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..

But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.

And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?

Sincerely,

Kelli

p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am...

----------- Hope0073:

I have known about the MP for about 4 years, if not longer.

I personally could not tolerate the Benicar--made my low aldosterone even lower and put me back in bed. I had gotten out of bed for about 2 hours a day thanks to low dose abx. I did light avoidance for about 18 mo. until I realized that it was doing nothing except making my already low quality of life even worse. The protocol did not work for me. It did not work for many I know.

I know several of the people who were originally on the MP board and have expressed their negative experiences, knowledge, and feelings in this thread and on other forums. I know many people from other forums who had a negative, even life-threatening exp. with the MP. I know many of the people who were kicked off or censored or sued by TM.

The MP is a very tough, controversial protocol. It apparently has helped some, although there are fewer success stories for Lymies. I personally don't know of anyone, except TM, who even after years on the protocol, are off the meds.

I am happy, happy for those that have toughed it out and have obviously benefitted. However, I must caution those considering it to do in-depth, painstaking research and be extremely cautious in trying it.

I will not respond to any queries. I rarely visit Lymenet. But I had heard of the current discussion on some other lists and felt I needed to share my personal experience and knowledge of it. FWIW.

-------

Barksplinter:

My wife is one that thinks MP harmed her. She is a very bright health care professional who very closely followed the MP guidelines. SEVERAL of her friends tried it and NONE were helped.

Some feel that intense long herxing is harming tissues.... especially NEURO tissues... whether the protocol is Marshall's or some other.

As others have noted Picking your protocols is and extremely important duty for "Lyme" sufferers. Unfortunately many are too ill to do ALL the homework that is required. That is the beauty of sites like this. They help those with less ability to process information.

----------

Kelmo:

My LLMD told Marshall HIMSELF that he was WRONG.

Several people in my Lyme support group did the MP for three years.

No improvement.

If it works for you...why are you here?!

--------------

Charlie:

I done told you guys that Rosemary (rosesisland 2000) landed in the ER with dangerously low BP from taking that benicar stuff. TuTu substantiated it.

Of course it just 'conveniently' got forgotten by the vit D avoidance crowd.

I have no idea how to get ahold of Rosemary or I bet she'd elaborate.....

why aren't there any regulating bodies looking into the MP site? are moderators or nurses or whatever they are, allowed to dispense medical information online for someone they haven't even met????

the last i checked, even doctors aren't allowed to give medical information online!

what is going on here????

who does the MP has a supervising doctor of their own, obviously, no other way get an rx.

And the doctors do make the ultimate decisions as to what to do, even if it's as simple as not re-prescribing the meds.

That's the end of my posting on this, as I - and my doctor - agree I'm not having any ill effects from trying it, only good so far.

TG we're allowed some freedom of choice is all the more I'll say.

have a good night. Victoria

the ulcer & h. pylori science ... took what, 30 years to become mainstream? Even tho abx doesn't cure all ulcers (mine included unfortunately). I don't think the guai protocol is accepted either, likely not many protocols for CF/FM/ME are from what I've heard from doctors.

"Every great advance in science has issued from a new audacity of imagination."--John Dewey

"Louis Pasteur's theory of germs is ridiculous fiction!" --Pierre Pachet, esteemed Professor of Physiology at Toulouse in 1872

As I've said before, haven't seen one protocol that has worked for everyone, but most all seem to work on small populations. IMHO that is an indication we comprise small groups of similarly infected and/or genetically compromised patients.

And, as I also have posted, success stories can be found at http://www.marshallprotocol.com/forum46/

Bashing of every protocol AND every forum can be found on most all the other forums, including this one.

C'est la vie, seems to be the human condition, healthy or not.

buenos noches, too tired to spar anymore...




[This Message was Edited on 08/26/2008]

If you under go the MP you need to be under a competent doctor and have regular blood tests for liver and kidney function. I have said in another post that my doc uses the MP but has found it causes abnormal blood tests in youngish males like me (37yo and still young). Jenbooks am interested on what antibiotic protocol you followed after the MP and did it help.

Heapsreal I never did the MP.

Victoria, a few weeks of abx for ulcers is quite different than years of benicar, rotating abx, and Vitamin D deprivation.

OK if Jen is soooo right????? (REMEMBER SHE HAS NEVER DONE THE MP)

Then I have to ask why do doctors have hundred of patients on the MP? And why have a lot of the doctors done the MP themselves?????????

Why does anyone on the MP not get metastic cancers?

Why are people getting a life they never knew with the MP?

THE MP IS NOT DANGEROUS IF YOU DO IT RIGHT!!!!!!!!!

JEN TIME TO WAKE UP AS I HAVE SEEN MANY MANY PATIENTS WHO HAVE TO WORK THROUGH DIFFICULT IMMUNOPATHOLOGY TO GET TO WELLNESS AND HAVE DONE THIS SUCCESSFULLY WITH THE HELP OF MP SAVVY DOCTORS!

Jen is right about one thing. The MP can be to difficult for those who already sooo sick they cannot handle the immunopathology.

I deleted my post because I can not babysit those who can see the writing on the wall.

You all can wait until your to sick but I AM GETTING MY LIFE BACK LIKE I NEVER KNEW WITH THE MP!!!!!!!!!!!!

See www.bacteriality.com for more patient interviews and great articles.

OH AND I KNEW OF THE COMPLAINTS YOU SPEAK ABOUT JEN BEFORE STARTING THE MP AND I DID MY OWN RESEARCH and am glad I did!!!!! So what you speak of is old very old news!!!!

All Best, Hope
[This Message was Edited on 08/27/2008]

it is still considered 'standard med' to give years of abx for acne.

on the MP. There is a very interesting link in parentheses that gives some factual information about TM's background that really gives pause. I leave it up to you to get to Ken's site, just google "Marshall Protocol Risks" and you'll get right to that page. Please take time to browse Ken's pages thoroughly including the links. It is very explicit and detailed and well thought out.

The FDA IS looking at the MP because one of their employees has SARC. They want to see if it is a viable treatment for sarc.

I have a good friend, Barney, who has sarc and is now a very happy newlywed because of the MP. No, she is not totally med free but she is doing extremely well.

I agree there are pros and cons to the MP. What treatment has EVER worked for all of us.

Dr. Sujay who used to post here and has/had CFS uses the MP with her patients. She is a wise doc and monitors her patients carefully. I have talked personally with her nurse.

Spacee

You will see hundreds of people doing the MP...doing it right and doing it safely....WWW.MARSHALLPROTOCOL.COM

If you look at WWW.BACTERIALITY.COM...You will why Jen is so wrong at her statments here. SHE HAS NOT DONE THE MP OR TALKED TO THE HEALTH PROFESSIONALS WHO HAVE DONE THEM MP THEMSELVES OR THE HUNDREDS OF PATIENTS ON THE MP. I HAVE DONE THIS! ALSO I AM ON THE MP.

I would rely on doctors with hundred of patients on the MP, and the hundreds of patients that are reporting on the site more than the others here WHO HAVE NOT DONE THE MP, COULD NOT TOLERATE th immunopathology, OR PLAINLY DID IT WRONG.

IT IS GIVING MY LIFE BACK!!!!!!!!!!!!!!!!!!!!!!!!!!! And many others just read www.bacteriality.com for indepth intervews.

All Best, Hope
[This Message was Edited on 08/27/2008]

Again, no one does well with every treatment. We're beating a dead horse here. There obviously ARE people who are being helped with a variety of conditions with the MP.

As far as abx being used for acne, it is most definitely NOT something of the past... http://dermatology.about.com/cs/antibiotics/a/acneabx.htm

I know plenty of friends' kids first-hand who have taken it within the last 5 years, and still do, for acne. This has not been recognized as a mistake by most doctors.

That said, everyone should evaluate whether ANY treatment is right for them with the help of a knowledgeable doctor(s).

all the best, Victoria

Hope, I don't have to do a treatment to quote others who did it and reported back on its serious side effects.

The MP should come with warnings about potential serious side effects.

But it doesn't.

You eliminated your thread because people posted "negatives" ie side effects.

I don't mind you on my thread, but I won't be eliminating it. It will continue to gather information about risks and side effects of the MP. Almost dying of kidney failure is a bit too serious a side effect in my book.

Yes labs specifically Kidney function can go out of normal range even into the high range but after adjusting the antibiotics to allow the immunopathology to calm down one is able to safely proceed with the MP.

I have seen this many times and is not unusual and this is stated on the MP site.

I dont understand why you do not get this? All the MP savvy doctors see this and have confirmed it to be immunopathology. Even the patients who are on the MP understand this as they see it working.

If it were permanent damage then patients would not be getting better and you would see permanent damage but this DOES NOT HAPPEN!!!!!!!!

Have you talked with patients hundreds of them who experience this type of IP like I have?

Have you talked to MP savvy doctors who have hundreds of patients who have immunopathology like I have?

Jen I am glad you have this post here and your not going to delete it. It will give patients a good look at what immunopathology can look like. However like I said before it can be controlled and managed as one works through the immunopathology to wellness.

The MP is not easy but I AM SO GLAD and THANKFUL for it as it has saved my life and many others...read www.bacteriality.com.

I challenge you to look further into the MP.

All best, Hope

I've been on the MP almost two years. I was physically & cognitively disabled, primarily with mycoplasma pneumonia.

I am finishing the phase 3 meds in the coming months, and have my life back. It's been a rough ride, but it beats being brain-dead....or dead!

Hope, just because you are doing better (which nobody is denying) or some others are doing better(it looks like you or somebody recruited Richie Rich to this site as this is his first and only post) does not mean that there are not serious risks and side effects to the protocol that must be acknowledged up front. And just because TM calls coming close to kidney failure "immunopathology" does not mean he is correct in his interpretation.

I challenge *you* to clearly state the risks and side effects.

As I recall, after 4 years, Aussie Barb, a prime MP proponent, ended up in the hospital for a month in critical condition. I think her gallbladder was infected, and I think she developed pancreatitis. I haven't followed up and don't know how she's done since. Is this because of immunopathology after 4 years? Or was she immunosuppressed from low Vitamin D and benicar?

There are various interpretations.

Good luck, at least this thread contains some of the "negatives" and you can't delete that.


[This Message was Edited on 08/28/2008]

Jen your funny.

You can say all the negative you want. Immunopathology is immunopathology it is as simple as that.

I have no idea who RichieRich but am very gald to see him here.

Keep saying all you want about the MP it will come out in the wash.

I am sooooo glad all the nay saying like you are doing did not stop me from doing the MP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
[This Message was Edited on 08/28/2008]

It has been the only thing that has brought me back to life. I have been ill since 1988 with cfs/lyme and it is the only thing that has worked.

Ken was a pioneer of the MP and yes he had a negative reaction but a lot of new things have been learned since then.

As mentioned Sujay the beloved Dr. who use to post here went into recovery and returned to become seeing patients full time due to the MP. Last I heard she had around 250 people on the Mp but she sees or talks to them monthly so she can closely monintor them. Even one of her staff members who was bedridden recovered on the MP and works for her full time.

Does it work for every single patient no! I know 3 people that their body just couldn't tolerate benicar and they had to get off. But what treatment works for eveyone?

As far as lymenet they are famous for bashing the MP. People use to report their success stories there and were only met with harsh remarks. Lonestartick was a prime example. She was doing all the IV abx and oral abx like most on Lymenet and was not getting anywhere. She is a friend of mine I should mention so I know how well she is doing. So she post her success on Lymenet only to hear snide remarks well you must not have lyme and on and on.

The majority of MP patients stay away from Lymenet due to the negativity when they here people are getting their lives back. It's almost like they are jealous.

If you want to try it you really need to find a Dr. that is very familiar with it.

I should mention Dr. Marshall is a biomedical engineer, for those that don't understand they seek out treatments for diseases. His wife has a degree in pharmacology.


[This Message was Edited on 08/28/2008]

good post!

all the best, Victoria

This is part of an interview with a patient on the MP who had done IV antibiotics with little success prior to the MP. You can find this and other full interviews at www.bacteriality.com

INTERVIEWER ASKED:

What advice do you have for patients starting the MP?

MP MEMBER REPORTED:

Be patient during your immunopathology (herxes). Sometimes you may doubt the fact that your symptoms are the result of immunopathology, but as someone who battled those same doubts and has now largely recovered, I assure you that once you become symptomatic on the MP, your symptoms are almost certainly the result of your body killing bacteria. Have faith and ride through your herxes, but stay in touch with your doctor. It’s sad, because some people drop out at the start of the MP because they can’t get their minds around the idea that feeling bad after starting the treatment is not a sign that their disease is progressing but a sign that they are killing bacteria as expected. Sometimes people feel very bad after starting the MP but, since the rise in symptoms is due to immunopathology, it’s actually a sign that the treatment is working TOO well (too many bacteria are being killed) rather than not working.

INTERVIEWER ASKED:

What lies ahead?

MP MEMBER REPORTED:

Now that I’m getting my life back, I feel like a kid in a candy store. I’ve just become a Grandpa and I feel confident that I will live to see my grandchildren graduate from high school and college - something I would never have dreamed possible before the MP. The lost opportunities in my career and the high-dose antibiotic therapy that I did for six years has cost me well over $100,000, so I’m ramping up my career again in order to become more financially stable. But I’m basically a life hog - I have the freedom to enjoy the rest of my life. I cry at sunsets, I’m gentler with people, and I’m also an activist. I want to do everything in my power to promote the Marshall Protocol and to help doctors understand the treatment and recommend it to their patients.

My son calls me the “Lyme Crusader.” I’ll literally stand in line at the grocery store and ask people if they know of anyone with inflammatory disease. Then I’ll hand them a flyer with information about the MP. The treatment has worked so well for me that I can’t just stand around and watch other people with chronic disease suffer when I know the MP can give them their lives back.

I am eternally grateful for Dr. Marshall and the others who have made such a difference in defeating these diseases.
[This Message was Edited on 08/28/2008]

for the signalling and regulation of innate immunity.

See

http://www.medicine.mcgill.ca/physio/whitelab/papers/Infection_Immunity_2008.pdf

There is as yet no single protocol that works, or is even safe, for everyone who has been Dx with ME, CFS, FM and lyme. We’re always pleased to read of people getting their lives back and to learn how this was achieved. However, enthusiasm for any particular protocol can blind us to the known risks and in the case of the MP there has been serious cause for concern.

I was told that if I took vit D I would just get worse but so far there’s no sign that has happened. During a heat wave I took the opportunity to avoid vit D and extended this for some months; it soon became clear this was not the right path for me so I opted to take vit D starting with a very low dose. So I am grateful to Trevor Marshall too for drawing my attention to vitamin D; even though in my case it was supplementing it and being in the daylight that brought about improvements. When classic Sx of vit D deficiency resolve and no adverse effects come to light it’s difficult to accept all the dire warnings about vitamin D and the MP interpretation of test results.

Those who do well on any protocol, especially the ones requiring a great deal of personal commitment, frequently refuse to acknowledge that for others their Tx might actually be harmful. Thankfully on forums like this one we can express our different opinions, post a wide range of papers and information, record our experiences good and bad, so readers can decide for themselves.

tc, Tansy
[This Message was Edited on 08/28/2008]

Exactly--a place for open discussion, not a thread to promote a protocol that is then deleted when some come on to post the risks. If I were to take Hope's approach I'd let this thread run a few days and then delete it because I can't "babysit" (her words) those "yaysayers" (opposite of naysayers).

Stating risks is not being a naysayer. It's being responsible.

Hope--I'm glad you are doing something that helps you so much, too. But I still challenge *you* to state the risks of the protocol. Couching the risks under "immunopathology" ie another word for herxheimer is irresponsible, and deleting a thread where honest people honesty posted their problems with the protocol and the harm it did them, is irresponsible.

This Video explains it all. It is very easy to understand.

http://bacteriality.com/2008/05/07/mpintro/

I posted this on the aforementioned deleted thread, but I think it is appropriate here for anyone who is interested. My other comments are separated into subsequent posts for clarity.

I feel sorry for anyone with brain fog trying to make up their mind on this, and again suggest taking plenty of time and learning as much as possible. There is a new Marshall Protocol web site that is now only in the planning stages. A lot of work will be going into it to make it as useful to patients as possible.

I want to respond about some things and write about some other subjects sometime later. It is going to take a while. I am now on what is normally the highest dose of the MP antibiotic combination that has always given me the most problems (immunopathology, or IP), and I'm using the name brand, which is strongest. Most of my symptoms are gone, but the brain fog still gets strong sometimes like this and makes it impossible to adequately interact in a forum like this. I'm sorry not to respond to some things.

This is the best example, IMO, of the way the antibiotics effects are intensified when the MP is done correctly. A nurse on the MP reported that he got a stronger reaction to this antibiotic than when he used it previously at 250 times the dose.

Writing a post that conveys just what I want to get across is especially difficult with this strong brain fog IP. Many things get into the area of being too complicated to adequately discuss in this forum. That is one of the reasons I suggest people read the Marshall Protocol web sites. It is also increasingly clear to me that using the Internet like this is filled with problems that cannot be overcome. I have never had a problem over the many years talking to any patient face-to-face on even the most difficult issues, but this is a minefield.

I should point out that I have gone through almost all of the antibiotic combinations, and I am not aware of any other person with a CFS diagnosis who has done that yet. I also am not aware of any CFS patients that were sicker to begin with. It may not be necessary to do the antibiotic combinations this way, but I have chosen to and hope it adds something useful to the clinical data. I advise people to go more slowly and carefully. It is easier that way.

The specific antibiotics used in the advanced phases of the MP are not talked about publicly for the safety of patients. Brain fog can get incredibly thick early in the MP, and experience has shown that a few people will take too much of those antibiotics early on thinking that the effects won't be too bad.

There is a private section on the MP site where people in the advanced Phases 2 & 3 regularly post about the antibiotics they are taking and what else they are doing. I've seen charges of secrecy made about the MP due to that reason but it is primarily for patient safety.

It also allows patients to more freely write about what they are going through, such as embarrassing symptoms, and get the advice and help they need from the moderators and other patients. Of course, I've never had any embarrassing symptoms myself. [Yes, that is a joke :-) ]

The Phases 2/3 forum now has over 60,000 posts. It is unfortunate that it needs to be private because it would be very helpful if everybody could read what is written there. There are so many things that become clear. It's a massive amount of clinical data.

There were many times that I could have stopped and thought or said that the MP didn't work for me. It hasn't been easy. It definitely won't work unless it is done correctly for long enough. That may sound simple, but in practice it is complicated. That is not a "blame the patient" statement. I also made mistakes. There are many aspects to doing it correctly. I also don't criticize anyone for stopping the protocol.

For instance, Vitamin D is not the only substance that you need to be aware of. The vitamin D receptor (VDR) is affected by other substances and not all of those are even known now. More are known than were known in 2004. Coffee is one of them, and it's not the caffeine. Soy is another. Most CFS patients are used to using a very wide variety of supplements and other things that might interfere with the MP. Like I said, I made mistakes too. Most of us are pretty stubborn.

Earlier, especially in 2004 when the MP went beyond the original sarcoidosis patient cohort, things were not running as smoothly as they are now. That is putting it mildly. It is one of the subjects I want to write more about later. The problems many people had because of it caused some people to fail in ways that I have been able to determine from reading their posts around the Internet. With others it is impossible to know. The protocol has been refined to make it better and easier, and many changes have been made to the web site and the way that it is run to make it better. There are more moderators with the knowledge and experience to advise patients.

I don't blame anyone harshly for what happened, but many things are clearer in hindsight. From what I have gathered of human history, humans are fallible. I know I am, and going through this treatment has helped me gain some more humility, IMO. Nothing of importance seems to go smoothly from the beginning.

Some people seem to think Trevor Marshall is some sort of two-headed ogre. I have talked to him many times over the past four years, corresponded with him, and seen him interact with people on the web sites. I think he is intelligent, helpful, and kind to people going through tough times. He has always treated me with respect and never condescended to me. He is human and fallible like the rest of us. I give him credit for doing all the volunteer work he is doing.

Roy

The following is in the required reading on the MP site. It appears to be what Penny and barksplinter's wife did. Roy

"The lowest dose of Minocycline recommended is 25mg. Do not use less. Taking tiny doses of minocycline keeps the concentration down to the level where it works the best.

In the initial months of this study site, some members reported that they could not tolerate 25mg of minocycline and thought they had to take even smaller doses. After some investigation, we realized that these members could not tolerate 25mg minocycline because they had not been avoiding sunlight or bright lights erroneously thinking that aspect of the MP was only important for those with sarcoidosis. We concluded that their symptoms were not due to the immune response to the minocycline 25mg dose but caused by a flare in 1,25-D due to the sun/lights exposure.

Subsequently, we resumed our original advice to start minocycline at 25mg every other day. Hundreds of anecdotal reports from the original MP cohort and those currently compliant with all MP guidelines, indicate that patients who are diligent about avoiding sunlight/bright lights tolerate the waxing and waning of immune response symptoms best at doses of 25 mg and higher.

There is no advantage to starting at a tiny dose and it may even be detrimental. Taking tiny doses of minocycline keeps the concentration down to the level where it works the best and may account for reports of continued difficulties with intolerable immunopathlogy by noncompliant members who thought that tiny doses of minocycline were better.

Kidney problems are common on the MP. I also had them for a long time early on. There is very extensive information on the MP web site about kidneys, including in the required reading. It includes information and discussion about the tests that can be done, hidden infection, etc. It may seem redundant to keep recommending reading the MP web sites, but it needs to be done to understand things.

Greg Blaney M.D., who has a large number of patients on the MP and is on it himself, is interviewed on bacteriality.com and has specific comments about the kidneys. His comments about some doctors not understanding that kidney tests going out of range is not necessarily a sign of kidney failure are very relevant. Citing internet reports from patients without knowing specifics is problematic due to lack of specifics, etc.

I have an MP friend who has had more than her share of kidney problems, and has been able to remain on the MP by carefully managing the antibiotics she takes with the help of her MP savvy physician. She doesn't want to come here after reading only part of the previous deleted thread, because like almost all MP patients, it's not good for her to have a lot more stress while on the protocol. She wrote me "There is so much misinformation and blatant slander about the MP being spread on that site--and others. It's too aggravating right now. I haven't the stomach for it."

There are refinements to the MP since early 2004, but I'm not qualified to discuss them, and this is not the place to discuss them anyway. Any physician can join the private Physician's Forum on the MP site and discuss things like kidney issues with the experienced people there. Obviously they could also directly contact MP savvy doctors.

Once again, I would advise people who are interested in the MP to take plenty of time to learn about it. It takes months. An MP savvy physician is the best way to go, but unfortunately not everyone can have one. Even then, it is best to learn everything possible and take all the time required to do that.

Roy

I really don't enjoy writing things like this, but I think it needs to be done. Anyone who decides to go on the MP may have to deal with a substantial amount of anxiety from the treatment itself, and some posts like these can add greatly to the difficulties involved. I have recently seen two people stop the protocol from anxiety from things like this. Patients can also get distracted from doing the protocol correctly when they read some things like this.

Taking selective quotes from patients on web sites about any subject can be very confusing, misleading, and unfair, especially when taken out of context. It reminds me of some of the tactics being used in the presidential campaigns now. There are so many posts about the MP scattered around the internet that it is impossible to track them all down and respond to them. Also, most of them don't have nearly enough facts to know what happened in individual cases.

I would like to know what MP savvy physicians would say about the specific internet reports of failures on the MP, but that is not going to happen. Some patients also do not report accurately about following the protocol correctly. I've seen it happen many times. Whether they know that they are not stating the facts correctly or not is something that usually cannot be determined.

I had seen these "assembled" posts. Charlie's post about Rosemary was quoted without the responses, including this one from someone who checked and found that she was not following the protocol correctly.

Rosemary- "I really need to be getting a tan before I go [on vacation] and need to be outside as I am typing this." Clearly this patient is not following MP since she should be avoiding light if symptomatic! Like most protocols, you can't just pick & choose which parts of the treatment to follow & expect to have good results."

I am very familiar with Penny. She is an exceptionally talented writer and has written extensively with what seems to be authority. Unfortunately, there are many things about the MP that she doesn't understand or believe. She has a grudge against Trevor. I have strong feelings about that and other things, and it is probably best for me not to write more.

I think she used too little minocycline, and maybe didn't understand how much too much light can affect some patients early in the protocol. She wrote that she had "Terrible headaches, vomiting, photosensitivity". I've had those as migraine symptoms before being on the MP. Penny says she had pseudotumor cerebri, also known as intracranial hypertension. From what I've read that has to be diagnosed with a spinal tap. She did not have one done. All I have seen that she has written is that she read about it as a minocycline side effect at a later time, so I don't know if that is a correct diagnosis. Obviously everyone wishes she didn't go through it, and that things would have gone OK for her. She also wrote that she almost died, yet a spinal tap not only diagnoses pseudotumor cerebri, it treats it immediately. If I actually thought I was almost dying, I would get it done ASAP. Again, using individual patient reports on internet sites is problematic. Arguing about them doesn't resolve anything.

Penny wrote that "I became a bad guy rogue for not doing the protocol "correctly", and that all her posts were removed. All her posts were not removed and I read them. The problem was that she kept posting junk science and arguing with other patients. It was confusing and disruptive and she was banned after being asked to stop and not doing so. She posted that she had switched antibiotics to Ceftin and was feeling really good. She was not on the MP after that antibiotic change. Trevor and another moderator explained to her why it was the wrong antibiotic to use.

Penny does not understand that the MP potentiates some antibiotics, but not all, including Ceftin. The warnings to not use other antibiotics without checking with the MP moderators is for patient safety because it is not known what every antibiotic will do in combination with the MP. Since she kept using the frequent dosing of Benicar after that, she is lucky she didn't use one of the antibiotics that the MP potentiates.

Penny only heard about the patient who died as a thirdhand rumor and does not know any of the facts. It was a sarcoidosis patient who among other things was terminal before starting the MP. There is a thread on lymenet that starts with someone posting about that and receiving that explanation. jenbooks, didn't you start that thread and get that reply?

Bark splinter states that it took his wife six months to work up to 15 mg every other day. Although he didn't respond to someone asking him to clarify the antibiotic, I think it's safe to assume that it was minocycline. Again, my above post about using less than the 25 mg that was specified in the Phase One document is relevant, as well as the post about kidneys.

jarjar wrote a good post and I agree with him about lymenet bashing MP patients. They bash many things and many people. I have been reading it without posting for three years, and I've never seen such a battleground between patients. It's unfortunate that it spills over onto other groups like this. It usually polarizes discussions to the detriment of patients. I searched the lymenet archives for past MP related threads and saw how many MP patients were driven away. I also have found two other sites that seem to be populated mostly by people who have been banned from lymenet. It all reinforces my understanding that these illnesses have profound effects on our brains, especially those with chronic Lyme disease. All of these illnesses are awful. The terms neuropsychiatric Lyme disease and Lyme rage indicate how badly Lyme disease especially can affect neurological functions including behaviors.

Roy

Demanding simple answers to very complex questions makes it difficult or impossible to respond. Anyone raising endless questions, some of which are impossible to answer, can likely expect to continue not to get responses to everything, or maybe nothing.

Demanding that risks for the MP be stated here is not possible, IMO. For one thing there are warnings not to combine the MP with other protocols. Not following it correctly can create unknown risks because of the countless other protocols . How can anyone possibly predict all those? It's impossible, and it is not unlike other medical treatments in that respect. There are numerous cautions and warnings on the MP web site. Again, it is not possible to cover everything in a discussion group like this. That is why people keep saying to read the web sites.

Since I first got sick in 1970, I've gotten to meet and know a lot of other CFS patients through an exceptionally wide variety of experiences. I have lost touch with most other patients because I became so unremittingly ill, and many of them did also. Two of them that I had gotten to know a long time ago died just this summer. They are not the only ones I've known that succumbed. The memorial lists for patients just keep getting longer. Doing nothing has its own risks.

As I have been trying to explain, all of this makes things more difficult for people going through a difficult medical treatment for difficult illnesses. It's no wonder almost all MP patients stay away from groups like this.

Driving MP patients off discussion web sites, whether it is deliberate or not, also means that people with legitimate questions don't get them answered, and I am sorry that continues to happen.

I don't think these issues and others will be settled here. It tends to be opinions versus opinions, and opinions of opinions of opinions, etc. It can go on endlessly. I need to spend my time on other things, including helping other MP patients. The new MP web site will also take a lot of work from many people before it is ready to launch.

I am happy to report that Aussie Barb has finished weaning off insulin. Anyone can read her progress reports on the MP site in the Phase One Alumni Forum and what she and her doctor think caused her hospitalization. She sure is an impressive person.

Meanwhile, research on the MP continues. Trevor Marshall and several other people doing research on the MP are now at the 6th International Congress on Autoimmunity in Porto, Portugal. Trevor is cochairing a session "VDR and Vit D in Autoimmune Disease" He and several others are giving presentations. It can be read about on the MP site, along with abstracts of the presentations. Videos should be online fairly soon afterwards.

Roy

cfs and lyme are not autoimmune diseases but after many years, CAN induce autoimmunity.
[This Message was Edited on 09/12/2008]

Hey Roy,

I was so happy to read that Barb was able to get off insulin. That is fantastic! She has struggled so hard and has been very ill for many years. She is a sweetheart.

Not everyone who starts the MP is going to stick with it. That's just the law of averages. Since it takes so long to complete there are going to be dropouts. People get afraid of the increased symptoms and panic. They get tests back that are off and their doctors get worried and then doubt sets in. I can understand being afraid.

I think some people get really hung up on the tests. I have never been a medical test person. I try and stay away from the doctors as much as I can. Let me use a friend of mine as an example. A very healthy male friend of mine who gave blood on a regular basis was rejected by the Red Cross all of a sudden because his liver enzymns were elevated. Well he got all panicy and went to the doctor for more tests. By the time he got his blood drawn his liver enzymes were already coming down. The doctor found nothing wrong with him. My point is how many times does the normal person have test readings that are off and never knows about it?

When the MP medications are taken the herxing will cause tests to be off from time to time but nobody has suffered any kidney damage that I am aware of. I'm using kidney damage as an example because the MP detractors like to thrown that out as one of the dangers of the MP. Actually Benicar is very protective of the kidneys and you can look that up in various scientific literature.

The MP is not for the people who want to dabble in the protocol. I do not want to talk anyone into doing it. I have a sister who could use the MP but I would discourage her from doing it because I know she would not be compliante and she has the attention span of a gerbel. The scarey thing about my sis is that she is a registered nurse. She also thought she reversed her osteoporosis in a week by taking her lady hormones (but that's another story).

Anyway I just want the people on this board to keep up to date on what is going on with the MP and the progress we are making.

banka8

I am an MP failure.

In one year I went from being very sick but functional, on a low-low level, to completely disabled. I went from working, doing my own shopping, cooking, laundry, etc., to bed bound, getting up only for meals (I could tolerate sitting up for just 10 minutes) twice a day. I live alone, and friends and family had to shop, cook, do my laundry and other chores. I urinated into a bottle, as I was too weak to walk to the bathroom many times a day.

My strength went to zero. I could not squeeze a tube of toothpaste or turn a pepper mill. I could barely walk. I was too weak to read a book! My forearms would ache too much holding the book, and would burn from turning pages -- that is, when I was clear enough to concentrate. My GI tract, already a mess, became so screwed up I was taking several prescription and OTC meds to keep it functioning at all. My light sensitivity got so bad that I lived in a fully blackened house. I mean BLACKENED. Casinos could have taken some tips from me. I used 25 watt b ulbs, turned down to half power or less. I was not able to leave the house for a year, due to weakness and light sensitivity, not even for blood work. They had to come for home visits.

This was not a Herx. I have been a Lyme patient nearly twenty years, and have been on scores of trx with various meds, and have herxed plenty. I am herxing with my current treatment. I know what a herx is. And this, friends, was no f-ing herx.

I am not saying there was no die-off involved, but whatever was driving this -- and I have some ideas what it was -- was something else entirely. My immune system, instead of improving as advertised, managed the near impossible feat of getting worse, plummeting me into an MS-like auto-immune state.

I did everything right. I had two board staffers, very kind people, very caring and helpful, and very high up on the MP food chain, trying to help me stabilize. I consulted many times with Dr. Blaney, who thought, originally, that "In a few months you'll be taking walks outside." But this did not happen. I made no improvements. Zero. I got much much much much much worse. Finally, even Blaney, a very smart and decent guy, said he had no idea what was going on, and that some patients just don't do well, especially those with GI involvement. I was one of these, a non-responder.

And I am not alone.

I know personally two patients who have done very well on the MP, one of them is now about symptom free, the other very close, and both of these people were my inspiration to start. But I also know personally six people whose stories are very close to my own -- getting worse, much sicker, unable to continue. In the course of eighteen months, one patient I know, a Sarc patient, the ideal candidate supposedly, went from being sick but with a life -- a job, a social life, etc. -- to completely disabled, bed bound, intolerant of light, and now of most foods and chemicals. This person did not have these problems beforehand, and has not bounced back despite being off the program over six months.

As for myself, I stopped the MP this past January, 2008, and in most ways have not yet returned to baseline. Though much better, I'm still am working to regain strength. Light sensitivity is easing. But overall, I am not where I was before starting, not even close. I still cannot do most household chores. Were my experiences all herxes, I would have been much better once the dust cleared, no?

My doctor had two patients on the MP. Myself and one other. The other one lasted three-and-a-half years, was fanatically faithful, a zealot one might say, and is no better than when s/he started. Thankfully, other than the time wasted, s/he is no worse.

Personally, I think TM is on to something. Unfortunately, I do not believe that it is what he believes it is -- the cure to every disease known to mankind. (And now "the fountain of youth!") I do not believe the D-disregualtion applies to most of these diseases, and certainly not to all patients, though obviously it does apply to some, perhaps many. Nobody knows. That is because there is not yet any real science to back any of this up.

As an aside, back in 2004 when I first started reading about this thing, the estimated time of recovery was 12-18 months. This was for a full CURE. Then when the Lymies and CFSers did not respond as advertised, the span was increased to 2-3 years. When they still weren't well, it became 3-5 years. Recently I spoke with a friend, another patient, this one still on the protocol, and was told it was being tossed about that it might take 8-10 years for a full recovery. A long time in the dark, I would say.

As for the actual results, if you read the "success stories" -- and I've read through them all -- you see a small handful of people who are symptom-free or near it, some who have many symptoms fall away and are now leading semi-normal lives, and the vast majority struggling -- a bit of good here, a bit of bad there. Mostly you see the same names over and over saying: "My bladder has improved" then later, "Now my head doesn't hurt as much!" It makes it look like there are many more successes than there are. Also, many of these "successes" have dropped out of the program, are on to something else, but are still considered successes. Odd that.

Still, the word CURE is popular though I have not seen one cure. Not one. But then again, it hasn't been ten years yet.

Until they admit this will not work generically across the board, no one will try to figure why some people respond and others don't. Until then, if I were a patient looking to take the plunge, I would be very cautious, and try to find someone who is doing well who matches my profile EXACTLY before committing.

Think about it.
[This Message was Edited on 09/12/2008]

Thank you, MP Failure, for having the courage and taking the time and energy in spite of how sick you feel, to post your truthful experience and give a better, more realistic sense, of the dangers of the protocol.

You said you had some ideas about why you got so sick on the protocol. I'd be curious to hear.

I'm glad to hear you're slowly recovering. Thanks again for your courageous post, and on a thread I myself started, so cannot be deleted like the other thread.

Something else that really gave me pause as I read this person's story (MP Failure).

And that is how seductive the internet is and how easily it can be manipulated, especially in situations where a protocol is being discussed. I saw this happen with salt/c (which harmed me) and with the MP, I suspect it happens with other protocols, too. Perhaps with the MMS craze that recently swept the internet. And that is, especially on boards with a moderator, the truth does not come out. On the salt/c yahoo group, those who had serious side effects (cardiac, blood pressure, edema, or kidney problems) were told they were doing the protocol wrong, and if they persisted in posting about their negative effects or worries, were banned.

It was like a group attack. From what I understand of MP, something similar went on in the past, where those who did badly or who did not interpret their side effects or troubles as "a herx" (salt/c) or "immunopathology" (MP) (which are different words with the same meaning, i.e. the idea that as you kill microbes you upregulate the immune system's cytokines *and* release microbial toxins, leading to symptoms that are unpleasant), those people were banned and their posts removed.

It really gives me pause that it takes *so* *much* *effort* to get both sides of a story out there on some of these protocols, so that people are informed ahead of time of the serious downsides. The original thread that hopeliveshere began, she deleted after people came on expressing experiences and opinions about the risks and dangers of the protocol. So we had to start again. Now you all have a *fuller* picture. People who would have been harmed are protected.

First do no harm.

It is unconscionable that it took this much effort and time to truly get a genuine picture.

This thread will remain intact.

A post today, 9/13/2008:

UnexpectedIlls Frequent Contributor Member # 15144

I was on the MP for close to 6 months.... I like the poster above had a not so good experience.

When I started the treatment I was still driving occaionaly and not completely bedridden.

Once starting the MP EVERYTHING got worse, I was weak, couldnt stand or walk by myself, could not at all care for my newborn daughte, cook, clean, do any sort of chore or think of anything but laying in bed everyday all day.

My heart would race all day and night in to the upper 100's, my house was so dark no one could see, and I only left the hosue for Dr's appt's when it was even possible to get ot to do so. Being so sick it was almost impossible to even bathe, ir get ready for appt's. If my fiance had to work and I had no one to help, a tray was set up in the room next to the bed with everything I needed for a day.

Month after month I continued to get worse to the point I thought I would surely not make it. I kept getting told I was too anxious or herxing too much... I dont believe this to be true.

I wanted so badly to believe this would help me like I had read.. and like the poster above I read it would take 12-18 months, than it was 2-5 years and than all of a sudden 8-10 years... Thats is RIDICULOUS.. no one can live thier lives in the dark for that long... talk about depressing.. which was also another things that got REALLY bad for me.

I was pulled right off of it. My light sensitivity took WEEKS to subside and I would get feveres just going for rides in the car.. thank GOODness that subsided, although i am still heat sensitive.

I am not much better, but am better than when I was on the MP... that was a horror show for me and my family.

Not meant to scare you, but this was NOT a good experience for me.

I think TM is defnitely on to something... but c'mon a cure all for all disease... I dont know?? I am happy it has worked for some who were really ill, but we ALL have different bodies with different needs.. and that goes for all treatments... what works for one may not always work for the other.

I would have loved to get into more detail but just cannot get into it right now. I hope this helped. Good luck and I hope to hear more people's story good or bad

--------------------

Ralph Ellison said:

"my questions for you are: when you got as bad as you did, did you have any problems bloodworkwise? were your kidneys, liver, etc working okay? did you have any electrolyte changes? or hemoglobin....sed rate....hematocrit...immune system disturbances....anything that could explain why you were feeling as sick as you were...."

On MP:

Kidneys and liver: elevated

Electrolytes: sodium went out of range low/dangerous

RBCs: all over the map

Chol: went from chronically low for years to 250 range

Hormones & neurotransmitters: too many to list, all low or none

IGG subclasses: all low but one, I forget which

WBC: low

Some tests may have improved.



Ralph Ellison said: "when you had the extreme weakness (which i know can be very scary), did you have an MRI, EMG, EEG to try and find the cause of that weakness?"



No. I could not leave the house for these tests. For blood work they came to my house to draw.



Ralph Ellison said: "i mean, don't you think it has been harmful for DRs to have been telling people with CFS all these years that there really isn't anything wrong with them?"



This is not relevant to whether or not there are any down sides to MP.



Ralph Ellison said: "it is harmful like you pointed out, to not let people post negative reports from trying a protocol, but it is also IMO harmful to create a situation where people get so confused that they don't know what to do and feel like they are caught up in battle of wills rather than an effort to simply disseminate information. isn't it also potentially harmful to scare someone away from something that could end up helping them get their life back?"



In theory you are right. But the MP site allows no discussion. Therefore, for the perspective patient the deck is stacked against free exchange of ideas from the get go. Few people get to hear about patients who have had my experience. And when they do, it is couched in the language of blaming the patient. In other words, the patient has failed the treatment; the treatemtnt hasn't failed the patient.



Ralph Ellison said: "so there are two sides of this coin, and it seems to me that many of the critics are trying to do the very same thing that they are accusing the MP supporters of doing. and that IMO is also potentially harmful.

I haven't seen anybody say that there are not dangers involved in doing the MP. in fact, there are many warnings on the MP site about this."

It is not a coin. There are many more than two sides. The warnings are all about herxes. Nothing about potential side effects from the meds, or dangers of the trx itself. In fact, when people question the safety of longterm high-dose benicar, the same tired old study gets trotted out -- which says, as best as I can remember, that benicar was safe to 320 mg. But this study cohort was tested just for three days. NO ONE has done any study that I'm aware of that says benicar is safe at 160+ mg daily for years and years and years and years. Do you know of any? Do you think this is an innocuous thing, taking this drug in this dose for this long? But they imply that this is the case. And when anyone questions it, things get ugly. If you haven't already, ask sometime about the side effects of benicar, or for that matter, mino, zith and the others. The answers that come back will suggest that these meds are the only meds on earth not to have ANY side effects. Only herxes. Remember, this is not an either/or deal. The reality of herxing, does not eliminate the possibility of toxicity or side effects or other interactions or problems.



Ralph Ellison said: "The thing that seems to bother the detractors is that the MP attributes the bad reactions to immunopathology.

but the problem is that the detractors use the same exact logic on this topic that they criticize the MP supporters for using.

i mean, if you want the MP people to NOT be so certain that a bad reaction IS immunopathology, then shouldn’t you also NOT be certain that a bad reaction ISN’T immunopathology?"



To your first point: this is not what bothers me. Go back to my above statement: This is not an either/or situation. As far as "... you also NOT be certain that a bad reaction ISN’T immunopathology?" A bad reaction? Or EVERY bad reaction? Also, the MP people are making these statements, so the burden is on them to explain -- I don't think it is on the patient who questions them.



Ralph Ellison said: "MPfailures reaction wasn't a "herx". we simply do not know that."



Then why, after such serious bug killing, was there no improvement? None? Maybe there was/is more to it than herxing, and the model held up is too simplistic to answer all the questions; questions which quite frankly were/are never asked -- assuming they're even known at this point -- because the answers were/are already decided.



Ralph Ellison said: "i mean, how do we know that an "MS like" reaction isn't a herx? there are very well-known researchers who believe that MS is caused by an infection and the damage seen in the disease is caused by the immune system trying to attack that infection. and after all these years and all that money poured into MS research, it is STILL a very poorly understood and inadequtely treated disease."



I'm not going to debate this. Autoimmunity is a very real thing. The question is whether it is being driven by infectious causes (I think it is), not whether autoimmuntiy exists. It is not, to the best of my understanding, the immune system trying to root out infections it can't see.



Ralph Ellison said: "just look at the CAP (combined antibiotic protocol). this treatment was developed by well-respected researchers at Vanderbilt. does someone on that treatment having a bad reaction mean that the treatment is wrong or does it mean that trying to root out and infection is dangerous business?

they have the same reactions to the treatment as people on the MP have. isn't it possible that both are due "immunopathology"?"



Yes. But they also recognize secondary porphyria, neuro-toxin damage, the necessity of detox and mopping up the mess, and they acknowledge the possibility of treatment failure. Not patient failure. The MP does none of this.



Ralph Ellison said: "anyway, it seems like the MP critics are asking that the MP proponents do something that they themselves aren’t willing to do - entertain that the other side of the debate might be the right one...

it is, in fact, within the realm of possibility that a bad reaction to the MP is due to a "herx" reaction and not due to some problem with the design or theories behind the protocol."



Yes. This is all possible. What is more likely, however, is that they are PARTLY right, and that they do not know all the answers, or even the right questions to ask. Until real study is done all of this is guesswork, grand theories sure, but unproven. This will take years.



Ralph Ellison said: "and again, i have no allegiances here and will be reporting my situation as honestly as i can. I'm not suggesting that people do or do not due this MP. i just want this discussion of it to be consistent, fair and most importantly helpful for those wanting to get information for themselves.

free for people to report dangers, but also not so fear-inducing that people can't really see if this is something here that could help them recover...."



This is a protocol that helps many, but not all. No one knows why this is true, but like it or not it is true. I hope you will be one of the ones that it helps spectacularly. And I also hope that when it does, you remember stories like mine and others, and do not dismiss them out of hand because they do not fit neatly into the theory. Remember, as you said: there are many who can be helped by this -- but also remember, there are many who can be hurt.

Good luck with your treatment.



Edited to delete name, and fix typos and fix a thing or two. Is this okay?
[This Message was Edited on 09/13/2008]
[This Message was Edited on 09/13/2008]

i have deleted my posts here because on second thought i do not want to get roped into this debate. it just doesn't feel constructive.

i respectfully request that you delete the portions where you quote me.

you assertion that my "allegiances are clear" is simply not accurate and i just would like not be part of this debate.

thanks bill

they were helpful posts... you don't have to respond to attacks, but having the info here can help some decide for themselves.

No one protocol works for everyone, as everyone should realize by now............. Just as a comparison, I've had at least 3 friends die from cancer even when caught early and got chemo/radiation. I know others who have gotten better. I know 2 others who did raw foods & the Anne Wigmore protocol and got better.

Those who did the chemo/radiation-- all had bad side effects, those who died I think it helped them get worse not better. Hard to say tho since the research never uses a group that is 'left alone' as it is considered inhumane.

Again, you will find success and failure stories with every single protocol, and deleterious effects even from seemingly benign supplements such as bromelain or sam-e or olive leaf extract... I can't even drink green tea despite all the research showing its good effects. There's no point in 'arguing' anything, but presenting the info is valuable.

Those who want more info will go to the library here and read Marshall's articles, read the marshallprotocol.com site, and bacteriality.com etc.... as well as listen to the cons. And then make an informed decision with your doctor.

I've had so many docs make promises to me for things that turned out badly, like the Myer's cocktail (anaphylaxsis!)...

This would be and maybe will continue to be a valuable post when both sides are presented, but not when it becomes totally one-sided.

all the best, Victoria

PS AND have seen first hand MMS help someone close to me who had lyme 6 years ago......... he got responses he never dreamed of... all ended up positive. I don't think it helps acute infections from first hand observation, but it does seem to do something for these long-term 'chronic' illnesses.


[This Message was Edited on 09/13/2008]

I think it's very important. If you want to delete the sentence "your allegiances are clear" that's understandable, but your responses to the questions are very, very helpful.

I for one don't appreciate the language "detractors".

If someone has a very bad reaction to a drug or protocol, they become a "detractor"?

When you have a bad reaction to a drug you're supposed to report it to the drug company--that's how they monitor potential side effects that didn't come out in clinical trials. Can you imagine when you call up the company, they label you a "detractor"???

Clearly it's not one sided. Both sides have been presented.

This is a valuable thread and I personally will not delete it.

my intent being twisted around here.

if you genuinely don't like how people were treated on the MP board, then at least have the decency to not do that here.

you have taken things that i wrote and now have attributed them to someone else....this is not right.

this topic is too volatile for me to get wrapped up and i ask again that you remove my words from your post.

thanks bill

1) I do think both sides should be presented, and

2) I was not implying or outright asking you to remove anything.

i just deleted a post because i saw your changes to yours and what i want to say is this:

i don't want you to remove information that you feel is important for other people to have.

i just don't like being painted in a light where i am a paritisan.

i am not. i only have getting better as my goal. i have been around the block on all these sites over the years. been there and done that.

i just want discussion to be constructive and not combative and i just feel like i have gotten myself into something that at this point can't be anything other than that. it is just too volatile.

i'm not sure how you can extract me from this and still keep the info that you feel is important.

i also think that this is an important topic, but it feels to me that it is not on track and just won't get back there.

thanks bill

I would suggest you let it stand, with Ralph Ellison intact, and MP delete her last post to you...

It's not inflammatory, and in fact, this thread has done a world of good imo.

Some who have gotten MUCH BETTER have posted.

Others who got horribly horribly ill and have not recovered from it have posted.

Flaws in the promulgation of and expectations of the protocol have been posted.

Questions have been answered.

Now people can really be forewarned and forearmed and if still interested because of those who posted they are feeling so much better, go to the site, and go to their doctors and discuss it.

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“The human body does not require sunlight, nor foods containing Vitamin D, in order for it to function correctly. The human body can manufacture all the Vitamin D it needs from its own 7-dehydrocholesterol. Clinical medicine is just plain wrong on its understanding of the actions of Vitamin D.” Trevor Marshall (1)

The Marshall Protocol (MP) claims to cure CFS and FM, as as such, is a very polarizing topic. People are either really for it, or really against it. Seduced by the molecular modeling and hope of a cure, I was on the protocol for almost two years. However, after almost landing in ER and experiencing a permanent deterioration in all my CFS symptoms, I have learnt first-hand of the dangers and risks of the MP, none of which I was warned. The MP worsened my existing CFS symptoms such as fatigue, sleep dysfunction, muscle and joint pain and created new symptoms such as neuropathy, parenthesisa, breathing difficulties, cardiac pain and tinnitus which have persisted. Thus I feel that it is my duty to warn others who may be considering the MP, which continues to attract many new patients, of all the hidden risks so that they can make a fully informed decision about whether to undertake this protocol.

The Marshall Protocol claims to be a curative treatment for illnesses caused by cell wall deficient bacteria. Given that various credible researchers such as Nicholson and De Meirleir have found mycoplasma in between 50-68% of CFS and FM patients, the MP seems to be a logical treatment option (2). (However it is unclear whether mycoplasma are the causative agent for CFS or FM or a secondary infection.) However, just because mycoplasma may be involved in your condition, it does not necessarily follow that the Marshall Protocol is either a safe or effective therapy.

Invented by electrical engineer Trevor Marshall PhD, the Marshall Protocol was initially designed for the treatment of sarcoidosis, a Th1 disease in which granulomas form in the lungs and where vitamin D pathways appear to be deregulated (this is generally not the case with CFS). The treatment is based on the premise that 25 vitamin D is immunosuppressive, that the cell wall deficient bacteria are converting excessive amounts of it into 1,25 vitamin D which creates inflammation in the body and thus disease symptoms. Consequently the Marshall Protocol advocates:

1 Eliminating exogenous sources of vitamin D including both dietary and sunshine. (This is includes blocking windows and installing low watt globes).
2 The use of Benicar in high doses which partially blocks the vitamin D receptor and inhibits certain inflammatory processes.
3 The use of different combinations of low pulsed antibiotics in order to eliminate the bacteria.

The elimination of vitamin D in tandem with the use of Benicar is claimed to switch on the innate immune system so that it ‘sees’ the bacteria. Marshall claims that the antibiotics don't directly kill the bacteria, but merely latch on to their RNA subunits, weakening them, and allowing the immune system to eliminate them. This theory, none of the elements of which have ever been tested in a lab, has since been rolled out to all autoimmune diseases as well as CFS and FM all of which Marshall claims are Th1 conditions and thus have the same pathogenesis and can all be cure by his protocol.

Who is Trevor Marshall?
Before I tackle the safety of the MP directly I think there is value in having a look at who Trevor Marshall is as the protocol has been wholly created by him and is not endorsed by any other researcher. While there has been some interest in his theories lately, there is little support in the biomedical or molecular modeling communities for the protocol to be applied to patients in its present form.

Trevor Marshall trained as an electrical engineer and did his PhD thesis with the Department of Electrical Engineering on modeling insulin production and flows in diabetic patients (using mathematical equations). Although he spent some time in the early 1980s modeling reproductive hormones, he spent most of his career working on electronic engineering and IT, including running YARC, a printer technology company, from 1988 until its bankruptcy in 2000. During this time YARC, headed by Marshall, was involved in over a dozen litigations at the Superior Court of California, predominantly as the defendant. The most interesting being Joseph La Bruna v. YARC Systems Corporation (2001) where the court found that Marshall “made representations and promises and concealed and omitted the true facts knowing such representations, promises and concealments and omissions to be false. They were made with the intention of deceiving, defrauding and misleading the plaintiff, and to induce him to act in reliance thereon.” (3)


After YARC went bankrupt, Marshall devoted himself to reading as much as he could on sarcoidosis, from which he suffered, and devised the Marshall Protocol in order to rid himself of the disease. After he and a small group of other sarcoidosis patients began noting improvements in their condition, Trevor Marshall decided to create a study site on the web for other sarcoidosis patients in 2002 and then in 2004 decided that all autoimmune illnesses, as well as CFS and FM, were Th1 illness and had the same pathogenesis as sarcoidosis and opened the study site up to all these conditions.

It is important to note that Trevor Marshall has little research experience in chronic illnesses and no formal training or research experience in microbiology, biochemistry or drug administration. While Trevor Marshall promotes himself as a Biochemical Engineer his PhD was in electrical engineering and consists of many equations modeling the effects of insulin in diabetic patients. His area of expertise is computer modeling, rather than medicine. His understanding of immunology is based on his own readings of various scientific literature.

How was the Marshall Protocol devised?
Trevor Marshall devised the protocol in order to treat his own sarcoidosis. He read into the discipline as an outsider and created a theory from his own research and personal experiences. He then wrote a computer model based on his research. The current Marshall Protocol is an extrapolation of the sarcoidosis theory to all autoimmune conditions which Marshall claims are all Th1 illness. (CFS is not considered an autoimmune condition and is considered a Th2 dominate illness not Th1 dominant illness). No objective lab work or animal testing was performed in order to determine the safety or efficacy of the treatment. Trevor and a few compatriots who were sarcoidosis patients simply experimented with various drugs on themselves. While Marshall has presented his model at a number of conferences now, he has not published any scientific papers on the full protocol itself in any peer reviewed journals. There is no support for his work in the biomedical community as he has not presented any objective data to support his claims.

Is it a cure?
The protocol is promoted as a curative treatment yet there is no evidence of this yet. The statement is made based solely on Marshall’s theoretical model not patient outcomes. After 5 years, no CFS patients are permanently of all the medications (including Benicar) and completely ‘cured’. While some patients have improved on the antibiotics, many of them have relapsed when they have stopped taking them and many still have just steadily deteriorated. A couple of CFS patients who had improved on the protocol and were held up as 'success stories' relapsed after stopping the antibiotics after 3-4 years on the protocol. Other patients stopping the protocol have also developed urinary tract infections, cancer and osteoporosis after extended periods on the MP. If you read the Phase 2 and 3 web boards on the www.marshallprotocol.com (you need to be a member in phase 2 or 3 to have access to these) you will see that the health of many people deteriorated while on the MP and they have had difficulty clawing it back (4). You will not hear about this or any such dangers on the public access Marshall Protocol site or www.curemyth1.org or www.bacteriality.com. There only the success stories are advertised.

The time promised for full remission on the Marshall Protocol was initially 12-18 months, then it became 2-3 years, then 3-5 years now 8-10 years is being bandied about. These are all Marshall’s projections, none of these claims are based on fact or outcomes. That’s an awfully long time to be on antibiotics and out of the sun.

Hidden Risks
Marshall claims that his protocol is perfectly safe for use by adults and children but does not provide any evidence to back this claim up. In fact the protocol involves many risks none of which are disclosed on the Marshall Protocol site, namely:

1. The risk of being out of the sun for extended periods of time will invariably deregulate your hormones. Vitamin D is a hormone that is critical to numerous of functions in the body. Long term vitamin D deprivation is associated with an increased the risk of osteoporosis, rickets and cancer. Vitamin D plays an important role in both the adaptive and innate the immune systems and has been found to be responsible for the synthesis of antimicrobial peptides(5). Marshall thinks that clinical medicine is completely wrong, that vitamin D is always immunosuppressive and dismisses the health risks associated with vitamin D deprivation because they do not fit in with his theories.

2. Modulating the immune system for prolonged periods in a way that has not been tested in a lab or on animals can have all sorts of dangers. Marshall has based his protocol on a computer simulation which is underpinned by his assumptions, rather than lab tests. Medical science does not yet fully understand what various receptors and components in the immune system do and what happens if you shut some of them down. For example, if you block Angiotensin II Receptor, which Benicar does, wound healing is impaired. Any number of feedbacks or alternative pathways could result none of which are known or can be predicted in a computer model. We simply don’t have enough information to make definitive claims yet.

3. The risk of taking antibiotics over long periods of time can create resistant strains of bacteria. This is especially a risk where patients are exposed to concentrations of antibiotics which are below the minimum concentration required for killing bacteria as on the Marshall Protocol. Bacteria have a number of ways in which to avoid being detected or killed by antibiotics particularly when they are exposed to them over a long period of time. Indeed resistance to macrolides (which are used in the MP) is an increasingly growing problem.(6) Marshall claims that it is the immune system, not the antibiotics doing the killing, that the antibiotics simply weaken the bacteria and make them more susceptible to being killed by the immune system, but there is no evidence of this. You just have to trust his theory that vitamin D is always immunosuppressive (which no one else agrees with) and its absence activates the immune system. One must also consider damage that long term impacts of antibiotic use can have on bacteria in the gastrointestinal tract.

4. Side effects of the drugs themselves:
o Benicar: The Marshall Protocol recommends the use of Benicar at four times the recommended dose for extended periods.
- Benicar is a very effective antihypertensive agent and also decreases aldosterone levels. CFS specialist Dr. Cheney states that this can be problematic in CFS patients who already often have low blood volume and low aldosterone levels.
- The safety of Benicar has only been tested on humans for up to a year and only at half of the dose recommended by the Marshall Protocol. It has only been tested on rats for up to 2 years, yet the protocol requires patients to remain on Benicar for several years. (7)
o The antibiotic Minocycline can have a number of side effects especially when used over the long term. Many of these are similar to the rise in symptoms that patients are told to expect from bacterial die back(8). So it is impossible to tell whether patients on the MP are experiencing bacteria die back or just a drug side effect.
o Other antibiotics used in the MP are not typically used over the long term so little is known about their safety over extended periods.

Patient Care
Every symptom encountered on the site is attributed by the moderators to toxins released due to bacterial die back or 'Jarisch Herxheimer Reaction' (or 'herx'). Symptoms can be acute and varied and can include cardiac symptoms, breathing difficulties, vomiting, depression etc…Some of these may be dangerous drug reactions others merely exacerbation of disease symptoms. Moderators constantly assure patients on the internet web boards that these symptoms are an indication of bacterial die back, that their medication dosage should merely be adjusted and at best some palliation may be required. No other alternative causes such as allergic reactions, drug toxicity, disease exacerbation, vitamin D deficiency are ever suggested as these symptoms are never contemplated as possibilities on the MP, despite the fact that vitamin D deficiency is known to create depression, muscle and joint pain (9). Patients on the MP are encouraged to drive their 25 vitamin D levels to below 12ng/ml on Phase 2 and 3 of the protocol, which is severely deficient, the recommended vitamin D levels being 32-65ng/ml.

Interestingly the moderators who are advising patients on how to interpret symptoms and how to adjust their medication are all themselves Marshall Protocol patients. They have all yet to finished the protocol and are still ill (to varying degrees) and see the protocol as their only way out of the disease. They all cling to the protocol as it represents hope, the only road to health and gives them a sense of control over their illness. As such, they are all very devoted to the protocol which inevitably clouds their judgment when advising patients on how to interpret symptoms and adjust their medications or whether the patients ought to be on the protocol at all. The overriding goal of the MP site is not to achieve the best possible outcome for the patient, but to push the patient through the protocol, as it is automatically assumed that in the end this will be in the patient’s best interest. Thus patients are encouraged to ‘hang in there’ even when their symptoms are quite acute and dangerous and are assured that this is a sign of bacterial die back and thus part of the healing process. This has resulted in a number of patients ending up in emergency wards.

Validity of Data
While the Marshall Protocol site claims to be a study site, the evidence used to support the MP on the site is not objective. Any positive post by a patient on the Marshall Protocol.com site is put up in the success stories section even though the improvement may be temporary and the patient has subsequently felt worse. The only way to verify this is to read all of a patients posts in the Phase 2/3 forum which are off limits to anyone not in phase 2 or 3. A handful of people have improved on the MP but it is a much smaller number than the success stories page would have you believe and improvement is based on self reporting. There is no way of knowing what percentage of people who started the MP have subsequently improved because anyone who stops the MP, due to an adverse reaction to the protocol is discounted. No one is interested in why they dropped out and none of this is followed up or documented. One only needs to scan the membership list (which has date of commencement and number and date of patient posts) to see how high the dropout rate is. These patients are simply dismissed as not being tough or dedicated enough, or not complying with the rules. Only those who stay on it for over a year are eligible for inclusion in any ‘study’. So far the only study conducted was a voluntary retrospective survey that was sent out to a random selection of patients. Obviously those having more success with the protocol are more likely to stay on it as well as respond to a survey. The patient feedback was retrospective and based on self reporting so this study (which was conducted by a patient as well) has more holes in it than Swiss cheese. This is the data that Marshall cites at conferences in order to prove the efficacy of the MP.

Interestingly no one is off all the MP medications and actually cured themselves of anything except perhaps Trevor Marshall. The number of CFS patients who have not relapsed going off the antibiotics is still in single digits. Most patients are plugging away on 3 different types of antibiotics, Benicar often with anti-inflammatories, pain killers, sleep meds etc…and claiming they feel better or that they will 'turn the corner soon'. It is difficult to know what is a drug effect and what is genuine improvement as Benicar and Minocycline do have an anti-inflammatory effect which could be mistake for genuine healing and, as state previously, most MP patients have experienced a worsening of symptoms when discontinuing the antibiotics which is ongoing (see patient comments on the following web boards) (10). This all implies that at best the antibiotics were palliating their symptoms and at worse suppressing their own immune systems allowing bacteria to proliferate and possibly breeding new antibiotic resistant strains of bacteria on the way.

Patients often persist on the Marshall Protocol despite being in great pain as cling to the hope of a cure and they are told by moderators that these symptom exacerbations are a sign of healing. Thus often patients do not quit until their symptoms become so intolerable that they are forced to stop. Interestingly, of the 40 MP the patients at my doctor’s clinic who persisted into Phase 2 (most dropped out in phase 1 due to acute symptoms), half them have experienced a worsening of CFS symptoms as a result of the MP and they have often developed new CFS symptoms including orthostatic intolerance, anxiety, neuropathy, muscle and joint pain, light sensitivity, digestive problems and depression. The other half managed to return to their pre-MP level of health after a couple of months (these people usually have spent less time in Phase 2.) Interestingly, none of the ex-MP patients from my clinic have experienced any symptoms improvement after stopping the MP. One would think that if bacteria were indeed being killed by the protocol, that at least someone would feel better after all that herxing.

Conclusion
Perhaps the biggest folly of the Marshall Protocol is the belief that what happens in a computer simulation will be directly replicated in the human body. The human body is vastly complex system with multiple pathways and feedback loops. The idea of calculating the drug affinity of a few receptors on a computer, running a simulation, and then confidently claiming that this will be replicated in the human body is naïve and dangerous. Molecular modeling is a starting point for research, it provides a general direction for lab work, avoiding the needle in the haystack approach to research which wastes time. But all of this needs to be validated step by step in the lab before being rolled out to desperate patients as cure, especially when it contradicts many current lab findings, as the Marshall Protocol does. Patients on the MP are expected to trust the results of one computer model, however unfortunately theory does not neatly translate into reality (11). We don’t know enough about how bacteria and the immune system work to build reliable models at this stage.

So in summary the risks of going on the Marshall Protocol include:
- Risks associated with having low vitamin D for extended periods of time include immune suppression, risk of cancer, rickets and osteoporosis.
- Risk of modulating the immune system in untested ways with unknown consequences.
- Risk of taking Benicar at four times the recommended doses for prolonged periods of time with unknown consequences.
- Risk of developing bacterial resistance and proliferation from being on antibiotics for long periods of time and a worsening of your condition.

These are substantial health risks to be taking in light of the lack of evidence to support the claim of a cure for CFS and FM by the Marshall Protocol. So if mycoplasma are found to be contributing to your condition, it may be best to consider other treatment options.

Footnotes:
(1): http://www.marshallprotocol.com/view_topic.php?id=9023&forum_id=35 jump_to=178280#p178280
(2): http://www.immed.org/illness/fatigue_illness_research.html, http://www.neurotransmitter.net/mycoplasma.html
(3) JOSEPH LA BRUNA VS YARC SYSTEMS CORP, Superior Court of California, County of Ventura (2001) Case number: CIV201956 ; A summary of this and other cases can be read at http://www.sarkoidose.de/apboard/useraction.php?action=get_upload&id=23; The list of court cases the YARC and Marshall were involved in can be found by typing ‘YARC’ into the Case Enquiry search box (for Civil cases) at the Superior Court of California, County of Ventura website found at: http://www.ventura.courts.ca.gov/vent_frameset_puba.htm
(4) See the patient comments on the following pages: http://heartscanblog.blogspot.com/2008/03/marshall-protocol-and-other-fairy-tales.html,http://articles.mercola.com/sites/articles/archive/2009/03/14/Clearing-Up-Confusion-on-Vitamin-D--Why-I-Dont-Recommend-the-Marshall-Protocol.aspx
(5)http://www.jimmunol.org/cgi/content/abstract/179/4/2060?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&searchid=1&FIRSTINDEX=0&minscore=5000&resourcetype=HWCIT, http://www.sciencemag.org/cgi/content/abstract/1123933v1, http://www.ncbi.nlm.nih.gov/pubmed/19285323?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum, http://www.ncbi.nlm.nih.gov/pubmed/19086827?ordinalpos=17&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum, http://www.ncbi.nlm.nih.gov/pubmed/19090451?ordinalpos=15&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum, http://healthnewsdigest.com/news/Patient_230/Vitamin_D_Immune_Response_May_Reduce_Fatal_Infections_in_Dialysis_Patients.shtml
(6) http://aac.asm.org/cgi/content/abstract/50/11/3646, http://www.ncbi.nlm.nih.gov/pubmed/14733843, http://www.docguide.com/news/content.nsf/news/8525697700573E1885256AE800496803
(7) http://www.fda.gov/medwatch/SAFETY/2004/nov_PI/Benicar_Tab_PI.pdf
(8) http://www.drugs.com/minocycline.html, http://www.drugs.com/pro/minocycline.html
(9) http://www.webmd.com/pain-management/news/20031210/lack-of-vitamin-d-linked-to-pain, http://www.nutraingredients-usa.com/Research/Vitamin-D-deficiency-linked-to-greater-pain
(10) See the patient comments on the following pages: http://heartscanblog.blogspot.com/2008/03/marshall-protocol-and-other-fairy-tales.html,http://articles.mercola.com/sites/articles/archive/2009/03/14/Clearing-Up-Confusion-on-Vitamin-D--Why-I-Dont-Recommend-the-Marshall-Protocol.aspx
(11) http://www.thisisms.com/ftopic-5628-0-days0-orderasc-.html, http://stuff.mit.edu/people/london/universe.htm