Dr. Marshall on XMRV

mycoplasma

A small, unpublished study by a private medical practice tested 35 "chronically ill patients" who had "persistent illness despite multiple therapeutic interventions" (conventional and complementary). Of those "69% met the CDC diagnostic criteria" for chronic fatigue syndrome (doesn't specify which CDC definition but would guess it would not be Reeves).

63% of all the patients tested positive for Mycoplasma IgG.

My own test came back negative IgM and equivocal IgG (and I do have a proper ME/CFS diagnosis).

As the defining characteristics of this study are not very precise, this may or may not add support to your conclusions. I don't think it helps my case, however.

 

Marshall Cult

Excellent point. The entire Marshall Protocol seems an awful lot like a cult.

 

Hi myco,

I am always interested in hearing about anyone who's gotten even a little bit better. I am so happy for you if you have gotten your life back. And I appreciate that you are sharing your experience, not just trying to forget about ever having been sick.

I checked your posts and they are almost all under the Lyme and CFS thread, which maybe not everyone will read. Maybe you would want to start a thread under the treatments thread with a title something like ME/CFS diagnosis in 2xxx and life back now after pulsed antibiotics. I think it would get more readers, although I realize it's asking you to write a fairly long post or series of posts.

If you don't start one, I guess I could always find your posts from your profile and get the story that way.

Thanks for your persistence.

islandfinn

 

Myco,

The problem with talking about cures and the pulsing of antibiotics is that there are still a lot of "old timers" on the boards.

Many of us have tried the various regimes and have followed the different doctors and theories for years. Some of us were made worse.

If pulsing antibiotics worked for all the people diagnosed with ME or CFS, most of these boards simply would not exist and we would not be so desperate for research.

We are fighting for our lives.

 

Aftermath, Cult was my impression as well. Identifying people by their "phases"? Creepy.

 

SDD1244,

"What you said is very important and what most CFS patients are overlooking. The virus may open the door, but the bacterial infections will disable and do real damage unless they are treated."

I agree. Both Garth Nicolson, Ph.D. and Dr. Meirleir have discovered mycoplasma infections (high frequencies from what I understand) in two-thirds of Chronic Fatigue Syndrome patients. Dr. Mark Shaw, author of "Beat Fibromyalgia and Chronic Fatigue Syndrome) also mentions these chronic bacterial infections in his articles (http://www.efibromyalgia.com/FibromyalgiaInfo/85.php). I share the same concerns that you have. The pharmaceutical companies, I'm sure, are not interested in this research.. as they will lose a lot of money.

I don't see the Marshall Protocol as a "cult". The protocol was recommended to me by two physicians. It is important to remember that there are other antibiotic protocols as well for CFS, including Prof. Nicolson's treatment recommendations and then afterwards.. his lipid replacement therapy. (http://www.immed.org)

 

P.S. --- I'm trying to fight the bacterial infections I have (apparently the longer you've had CFS, the better chance that you will test positive for more than one type of mycoplasma infection) the natural way. I'm taking UNDA and PLEO formulas, which are the same formulas that put me into remission years ago. I believe that this treatment is working but if it doesn't, I may go back on the MP or another antibiotic protocol instead.

 

Yes, I got my life back with The Roadback Protocol, then added in some things that the CFS patients at Cpnhelp.org use. I persisted, even when I thought I was losing ground for a year (that's when most quit). I spoke with many patients who were well and encouraged me to keep going. I did, but it took a few years of ups and downs. Now it is all ups. I still think many who failed these protocols did not follow them the way they are prescribed. I too was guilty of doing too many alternatives at once, switching from antibiotic to herb and back. You need to do a low dose pulsed program that hits all the co-infections at once, starting one at a time (ie Doxy, then add zith, then much later Tindamax or Flagyl). It works for many (and they all had viruses too!). If anyone has any interest just go to the sites mentioned above. They will provide everything you need to decide what is best for you. Be well.

 

myco,

I've read some of the success stories on the Roadback website (http://www.roadback.org/) and they are amazing ! I'm happy that you've made progress as well. These bacterial infections are very difficult to treat... they can take years and the detox symptoms make you feel worse.. but I began to notice improvements (slowly but surely).

 

P.S. - What I state above, my wellness etc...has nothing to do with the Marshall Protocol. Enough said.

 

I'm not sure I totally understand: I thought CFS/ME patients believed themselves to house any number of bacterial and viral infections. This thread makes it sound a bit like patients are choosing against treating bacterial infections; is this true?

Personally, I haven't been able to find a doctor willing to test for bacterial infection, even the mycoplasmas. It's my understanding though that many patients, even if they have doctors willing to test, can't necessarily get the right choice and duration of antibiotics--or that many patients can't tolerate the side-effects of the abx long-term. I don't perceive that as a choice necessarily.

It's interesting to read the info here though. Back on topic: Trevor Marshall is not doing himself any favors based on what I've read on his posts. I find it bizarre that he would play down XMRV and then write (not verbatim) "AIDS is a terrible and serious virus that does a great deal of harm." Sorry, my power is just back on and I don't want to take the chance of losing the post to go back and find it to quote, so if it's way off, I apologize. Again though, I don't know why he would perceive XMRV to be evidence against treating bacterial infections--but perhaps I am missing something.

 

Surprised

I am quite surprised at the condescending attitude of many of the folk posting on this particular thread. I notice that no one responded to the positive post earlier. Wonder why?

Do most of you really think that people on the MP don't know that Marshall behaves unprofessionally? Do most of you think that most of us don't know how he gets in the way of his own goals? (Which by the way is to make a contribution to science. Go ahead and roll your eyes and take the mote out of the both of them while you are at it.) Do most of you really think we, as a group, are unaware that he has an outsized ego? (Like no one with an outsized ego ever did anything good in the world? Like there are not plenty of researchers with outsized egos? Yeah, I'd love Marshall to have Pall's demeanor. And I'd like there to be better toys in the Cracker Jacks box as well.) And for the people who have gotten well, one of the most difficult things for them, assuming that they believe the MP is all that it is cracked up to be, is no doubt watching Marshall get in his own way.

Do most you really think most of the people on the MP are that desperate and that stupid? Some of the brightest people I know are on the MP. Of course, the people who have been smirking here at our expense--other people like yourselves who are struggling with CFS--are likely to conclude that I must be pretty stupid if that is the case. Yeah, pat yourselves on your self-satisfied backs!

I often detect a note of superiority in people who put down the MP and who also put down the people who choose to do the MP. And it appears that many on this site are no different. Smirk, smirk, smirk. Sheesh! Aren't your faces hurting yet from all the smirking?

Now that I've behaved just as snidely, rudely, and callously (well maybe not as callously) as some of you....

As someone who is on the MP, I can tell you that I felt much worse for the first two years (it is a feel worse to get better protocol), and so I can understand people who tried the MP and felt like the MP made them worse. There were folk on the MP who did not think I would live through the first six months. I felt as if was near death prior to the MP (I had a close relative die of congestive heart failure and so I'm fairly familiar with the routine); I like I was moments away from death much of the time. Now, I am much better. I have a long way to go yet, and the MP may take me the rest of the way or not. I don't necessarily believe that the MP is the end all myself... just worth a shot having tried many other options myself and not seeing much out there.

Even though, I was probably toward the end of my life, I was not desperate for a cure when I stumbled upon the MP, and I had accepted that I was going to die and soon. Maybe some of the people here are scared to death and scared of death, but don't assume that all or most of us on the MP are.

As for a cult, we don't try to convince anyone to do the MP, and most of us (other than Marshall at times) are not snide about not trying to convince anyone. We do, however, support each other.

How safe do you think it feels for someone who is on the MP to be a part of Phoenix Rising and read what has been written here? How supportive of a community do you think I could find here?

Thanks a lot! A real supportive community. Yeah, that was a smirk.

Sheesh!

 

Sorry Sheesh. We really need to be more careful of our comments. Dr. Marshall is a kind of easy target because he's so outspoken at times but his protocol has hung around for a while - which makes me think it does work for some people.

I do know of someone who did much better and someone who had no benefit with Dr. Marshall. WildDaisy did worse and Sheesh did much better. I've been in touch with people who have done quite well on it. I don't know how many others do/ Sheesh I hope you'll continue to share about your experience with Dr. Marshall's therapy.

In order to get all the information of any treatment we need to be open to it. No one knows what might be helpful or even the answer. It would be a shame if we let someones outsized personality get in the way of that!

 

Thank you Cort

I entitled my response "Surprised" because I was surprised to see the same sort of ad hominem attacks on Marshall and the people on the protocol that Marshall is accused of.

And so I thought turn about was fair play.

I agree that we ought not let a person's over sized personality get in the way of our trying to understand that person's theory about what causes chronic illness, CFS included.

If anyone wants to look at some of the science, you can view the videos at this site: http://www.youtube.com/user/DrTrevorMarshall

You can read through Amy Proal's excellent website: http://www.bacteriality.com

And if you can handle interacting with Marshall and are proficient in science, you can always become a member of the MP and engage him after having reviewed all of the videos and the various papers that have been published.

Thanks again Cort!

 

Personally, I think it's as you say below, the overall tone earlier in the thread is mainly due to Marshall's 'unprofessional' bedside manner. You must admit, if anyone could be accused of being condescending, it's you know who. I'm sure if there are others on the MP who are benefitting from it, they'll speak up.

I may have missed them, but I didn't see anyone 'put down the people who choose to do the MP' or 'call them stupid'. A lot of us are desperate, that's just a reality, not a derogatory statement. In fact that same desperation may also be why so many are (over?)excited about the XMRV news.

I'm truly sorry you have been through so much, and so very sick, and can totally understand why you would be angry and want to defend what has helped you. It is very rare, or at least seems so, to find or hear about anyone who has improved on the MP, so if it helped you, or is helping you, that is great. But even if some of the comments may have come off as rude or not supportive, I hope you'll appreciate the fact, and it is a fact, that it is impossible and has been impossible to have any kind of open discussion or disagreement about the MP over on the MP boards. I'm sure you're well aware of that. Ask too many questions, and one is banned. It's happened to patients, and even volunteer moderators over the years.

I actually think you'll find that it is supportive. You'll no doubt hear the other side of the MP story...especially about the many people who have indeed almost lost their lives while on the protocol (which is also well documented), but that is 'supportive' as well, since it may be harmful for some, and those who have gotten much worse may want to speak up.

And I would respectfully disagree with when you say "we don't try to convince anyone to try the MP". Most of you may not, but Amy Proal has posted on many, many boards doing exactly that. Very respectfully, but still, very actively. That's what her website is all about, isn't it...to promote and convince people to try the MP?

If you do come back, I'd like to ask if you know of anyone who has actually finished the protocol, stopped all the drugs, and remained recovered or cured?

I'm not being snide (I hope not anyway)...just asking a question that never seems to get answered.

If you'll check out other sections of the forums, you'll find indeed, that is overall a real supportive community. Again, I can understand why you felt the need to speak up, and glad you did.

 

Probably because the positive post was a patient testimonial and was not related to the topic of the thread, which was about Marshall's public response to XMRV.

Some of us know nothing about MP, but now that I've read accounts both by those here that are condescending to him and by you, I don't think this is someone that whose opinion I would respect.

You are so sure that you can vouch for his motivations? Why are his motivations for profit and ego-inflation alluded to by others here? And that roll your eyes/mote comment - so nasty! Maybe this is how things are discussed on the MP forum, but that comment is the meanest response to other members that I've ever seen posted on the Phoenix Rising boards. I'm surprised Cort has overlooked this.

Oh, I see that you agree that ego-inflation is one of his motivators.

Who said that people on the MP were desperate or stupid?

I read about his "smirk" emoticons. And there are posts that don't find TM's science to be sound. But you really are stretching this to members smirking at you. And there you go into another attacking comment "pat...backs". If you disagree with a post, there are ways to quote the post in question. I haven't even posted on this thread and I feel attacked by you.

I detected a note of dissatisfaction from some who tried the MP, I detected a note of incredulity at his theories, but how did you detect a note of superiority? Where is this coming from?

Yes, you've behaved badly and now have the honor of posting the rudest comments on this entire forum.

As someone who knows nothing about the MP, this is the kind of information that can be helpful. I've just been diagnosed with CFS. I am interested in learning from patients who have tried some of these treatments. But there was nothing in the above posts that indicated an assumption regarding the fear of death in MP protocol patients. This comes out of left field.

Um, I don't think that after being snide and rude and callous that you'll find much in the way of support. Had you started out your post with a civil statement of disagreement and directed your arguments to the individuals in question, this could have proceeded into an opportunity for us to be informed and for some to even change their opinion. But, sheesh, after you write what you did, I for one am not about to offer you support.

You've extrapolated that this entire community is unsupportive based on criticisms voiced by a handful of members. Many of the criticisms against Marshall you even concur with. I take offense at your tone, your generalizations and your smirks. You included all of us in the direction of your malice and that's uncalled for.

 

sorry sheesh

Sorry if I hurt your feelings, sheesh. I'm the one who used the "desperate" word - but just so you know, I didn't mean Marshall folks were extra desperate, I meant we are ALL desperate and will try almost anything to get well. I know I have (though I never tried the Marshall protocol - sunlight is one thing I'm not going to let go of). I'm glad it benefits you.

 

I too used the word desparate, and I'm sorry if it offended you, but the Marshall Protocol does seem quite odd from my perspective, especially about staying out of sunlight. But here is my context, I am 24 years old and this Janurary I shall have had ME for 13 years. Tese are just a few of the treatments I have tried...

- Progressively colder showers until as cold as possible intended to boost blood supply then healing
- Large doses of cod liver oil
- Shiatsu (actually did me a lot of good, it's like acupuncture without the needles)
- Homeopathy (good first time, no effect second)
- Don't eat apples
- No gluten
- Sunrise lamps
- Counselling (yup, CBT was among them, made me worse and enhanced my depression)
- Psionics (by far the oddest, first level treatment made me iller so I stopped)
- Hynotherapy
- Prayers from spiritualists put into a jar in a shop (lovely folk, really caring)

For the last four years I've stepped back from alternative therapies and I never really had the choice to step up to western medicine, I was just sent away with Amitriptyline when my sleep got too bad and that was that. Desperation is not a bad thing, it's a natural response to a situation that is happening against our will. Sometimes you can have acceptance, but I won't deny that part of me is always looking out for The Big One, maybe XMRV is it?

In the UK and Europe we have dozens of treatments, tests and therapies that are the utmost quackery. Maybe to stop believing that every 'cure' that comes along I've become cynical, but on a personal level the MP does not pass muster with me. I think it was fair of us to comment on his attitude to the XMRV news also, it was not very professional. I also think it is poor of him to call himself Dr on a medical treatment site when he is not an M.D. that is misleading.

I don't blame anyone for taking which ever treatment they choose, but some I just don't agree with. I have had friends who have benefitted from the 'talking therapies' over here, but that is not enough for me and I do think there are those who are 'cashing in'. Again, personal choice. I appreciate that MP has worked for you, I have my concerns about it which I am free to have. I long wish you health and happiness.

 

From my sample of one, treating bacterial infections hasn't contributed at all to my big ongoing recovery. I'm classic Incline cohort.

 

HVS - when you say you are classic Incline cohort, what does that mean exacty? Is it where there is a viral trigger/acute onset? Sorry to ask, but I am pretty new to all this but think I might be an Incline stylee case.