posted
Can folks who have actually tried this tell me how it went? Results and side-effects? Good or bad.
I don't want to hear from the folks who chime in on every post and say "oh I had this and the Marshall Protocol resolved it" for everything, please. No folks who are Marshall staff.
Real results. The protocol seems like it has potential but also has drawbacks. Honest results, please.
If you haven't actually tried the protocol, please do not respond here with opinions. I want to keep this thread "results by those who have tried" only.
Thanks! Posts: 111 | From Nowhere | Registered: Jun 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Someone just posted this on ImmuneSupport--a true look at the worst case scenario:
MP Failure 09/12/08 05:51 PM
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]
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
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
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
posted
I looked into this protocol myself and honestly was not impressed by the patient testimonials. Although some lyme patients have seen some slight improvements, I am not aware of anybody who has really regained their health back to 100%....unlike others I know who have done more aggressive, 'traditional' antibiotic treatment.
I'm not saying this is the case for all lyme patients who have done the Marshall protocol but I felt that my odds were better treating with a LLMD using ILADS-based protocols.
Certainly the scientific theories behind the treatment is interesting but I'm not sure it has proven itself clinically....particularly for lyme.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic