Starting Marshall Protocol

I just found out last week I have Lyme after being ill since Aug.2011 told Dr I got bit by several ticks and one left a red rash....I have all the classic symptoms muscle twitching, fatigue, depression,etc. the list goes on and on,found a LLMD on my own and he ordered a test for Igenex and yes came back pos. for Lyme I will be starting Marshall Protocol  in a few days.needless to say I am very nervous about the whole thing especially what I have read about the herx part. I don't want to feel worse than I already do.

Barbara

[Ricobord]

Hi, Barbara! Welcome to the forum!  That's terrific that you have found an LLMD and got tested at IGeneX.  It's got to be a wonderful feeling to have your diagnosis and to embark on a treatment program.  Yes, it will get better!

I don't know much about the Marshall Protocol, but I have heard of it.  I would say don't worry about the herxes unless they actually happen.  It is good to be aware that a herx is possible so that you don't over commit yourself shortly after starting a new med or supplement. An important thing I have learned is to lower my expectations about how good I'll feel on any given day, and then if it's a good day, I can enjoy it. My PA told me that many of their patients little to no herxes.  A friend of mine had herxes that only involved some brain fog and the need for an afternoon nap.

I have had aherx every time I started a new antibiotic, and I just had one a couple days ago when I took a full dose of an herbal product (Cat's Claw) that I had been off for two weeks.  Usually I get a 'heavy head', brain fog, sometimes a headache, and sometimes get cranky.  Sometimes I just have to go lie down for 3 hours because a handful of symptoms intensified.

When I got my first shot of penicillin, I had a huge herx in my ribs. They had hurt a lot before I got diagnosed, and they must have been loaded with the bacteria, as I had rib pain herxes multiple times in the first couple months of treatment.  I have learned to appreciate a herx as it tells me the medicines are working and the little buggars are dying!

Occasionally they can be serious enough to call your doctor.  Hopefully his/her office gave you an emergency number you can call to ask for advice if a herx or symptom is getting to be too much for you.  This doesn't happen often, though, so odds are in your favor!  

[mojogal]

i was told by several medical professional friends who have Lyme and my LLMD that although the herxing is not the most fun, when you start treatment you usually get worse before you get better. I know that is not much comfort when you are worried but like Ricobard said, many of my herxing episodes now are only 3 hour naps and such. At least you can be certain you are on your way to getting better. I am not sure what the Marshall protocol is but we are here for you and welcome to the group. Good luck and let us know how it goes.

[JackieCalifornia]

I never felt worse while on antibiotics than I did while sick ... everyone is different that way.

And speaking of different, Trevor Marshall's approach is different from that of more mainstream Lyme docs.  He counsels on strict avoidance of sun -- meaning NO sun AT ALL, as I understand what I've read on it.  He uses Benecol, another med I haven't heard of LLMDs using.

I think his idea is that sun exposure, which is needed for the body to create Vitamin D, keeps the Lyme bacteria alive and reproducing, so by blocking *entirely* exposure to sun, it breaks the chain of Lyme bacteria reproduction.

I looked for a while for the scientific rationale for that approach, but was not able to find anything.  It seems a bit cult-ish to me, but probably all of us Lymies seem that way to nonLymies.  I just like to know why the doc is doing what s/he is prescribing, and I've never reached a comfort level with Marshall's approach.

Let us know how you do -- we're all rooting for you!

[youvegottobekidding]

I was put on the Marshall Protocol when I first started treatment, and it was catastrophic. I went from functioning but feeling grotty, to being bedridden.  
It took 18 months to get me slowly back to where I had started, by taking a cocktail of antibiotics non stop.
Everyone I have spoken to with Lyme - and I wil be interested if other members of this forum agree - says interrupting antibiotic treatment only causes relapse and increases the risk of getting antibiotic resistance.
Also the Marshall protocol says you must avoid the sun so you can get your vitamin D levels as low as possible. This flies in the face of all respected medical research, which has found that HIGH levels - much higher than previously thought - are essential for normal functioning of the immune system. I can tell you from personal experience that this is absolutely true.
Finally, "Doctor" Marshall is NOT actually a doctor of medicine. Not many people know that, he doesn't exactly advertise the fact.
In my opinion he is a charlatan and his treatment causes only antibiotic resistant strains of bacteria and immuno-suppression.
You need an ILADS registered doctor if you are going to have any chance of curing your Lyme diseae. And not one of thoe will ever put you on the Marshall Protocol.

[JackieCalifornia]

thanks for your comment .. that is pretty much my conclusion too, but since I haven't tried the approach or known anyone who has, I hesitated to say.  I did go back and do some reading on Marshall's approach and it does sound like it leans toward the idea that Lyme is an overreaction of the immune system and so the *immune system* needs to be suppressed, but that seems backwards.  I'd be very careful before going Marshall's way, and personally, I wouldn't do it, but that's just me.

[mojogal]

I just read it and I personally wouldn't do it myself. I guess there can be a lot of protocols out there that want to take advantage of vulnerable Lymies.

[JackieCalifornia]

A vignette about Marshall's practice:

By chance, we lived near Marshall's office in sunny Southern California some years ago.  We used to see pasty pale people walking around the area where his office was (in a kind of suburban-style office park), wearing long sleeves and pants, and fabric sun hats with wide brims in front and a long shade down the back, along with those big plastic sunglasses made so they can be worn over regular glasses, wrapping around so that sun would not get in around the edges.  They seemed a little odd, esp. when it was 90 or 100 degrees in the blast of summer heat, but hey, it's California ... everybody is entitled to be a little odd.

It was only some years later that I realized where Marshall's office was and that these were probably some of his patients.

For what it's worth.

[Ricobord]

So I got curious and read a lIttle bit about the Marshall Protocol.  I am definitely confused.  It includes "post Lyme Disease treatment syndrome" with a list of various autoimmune disorders as conditions treatable with the MP. This is consistent with the IDSA's view that Lyme cannot survive a month or two of antibiotics and ongoing symptoms are a result of an overactive immune system.  

But LLMDs believe ongoing symptoms represent continuing infection. Following a protocol that will interfere with the immune sysem sounds counterproductive to fighting a bacterial infection that has already somewhat suppressed the immune system.  

And if you have never been treated for Lyme before, why would you take low dose abx that won't kill the spirochetes. It just doesn't make sense.

It also says that you need several years "to reach a state of remission!"  I recommend that you go for an ILADS MD, antibiotics, and a real cure. Most people are cured in 1-2 years.

Sorry, Barbara!  We don't mean to gang up on you. But we Lymies who have struggled to get a diagnosis and treatment truly want others with Lyme to find a doctor who will treat them successfully.  The goal is the cure, not years of hoping for remission.  This isn't cancer...it's a bacterial infection.  True, it's a complicated one, but no one else in the world thinks that Lyme should be treated the same as sarcoidosis and psoriasis.

[JackieCalifornia]

I don't disagree with your conclusions, and it's been a few years since I read up on the Marshall program (sorry, i can't bear the pretentious term 'protocol' .... sounds like it should be the name of a Robert Ludlum spy novel ... 'The Marshall Protocol'.)

I did read the explanations of Marshall's theory to understand for a brief moment the seemingly backwards approach he takes to killing Lyme ... his theory is that certain ordinary things like sunlight and Vitamin D are what keep the bacteria alive, and so blocking all that out starves the bugs into oblivion.  Once I got to the point of 'Oh, so that's what he's getting at', my next thought was 'Not for me.'  

Anyone who is interested can read at a website that may be hosted by Marshall and/or his supporters:  mpkb [dot] org / home / mp

It is as clear a summary as I have read, and while it makes numerous assertions, it doesn't (to my reading) actually *explain* anything.

A book I have mentioned previously here is Bryan Rosner's 'Top Ten Lyme Disease Treatments'.  Rosner tried the Marshall program and ended up modifying it, ultimately finding it somewhat beneficial for himself personally, for reasons he (sort of) explains in his book.  He doesn't seem to understand the reason it may work any better than I do, but that doesn't mean there's not something to it .... however I personally want to know WHY the person recommending something believes it works so I can follow and either accept or reject the logic behind it.

Anyone deciding to pursue this treatment approach should imho read everything you can get your hands on about Marshall and his program, know why you are doing it, and understand it enough to know if it is pushing you into a bad situation as you follow the program.  That's pretty much what I think Rosner did.  

Anyone trying it, please post back with your results.  We're all ears here ... and a few opinions to go with the ears, too.  :)  

[youvegottobekidding]

The hard thing about researching the Marshall protocol is that the only publicly available information is stage one and part of stage two. It progesses onto stage three (and possibly more stages) which are only fully revealed and supposedly explained, to faithful adherents who have already followed (and paid for) the previous stages. This means it is too much like joining the Church of Scientology or some other cult for my liking.
I did not know this when I was first put on it otherwise I would have refused. I am only willing to try therapies that have been published in respected medical journals and subjected to peer review.

BTW Jackie, the description of the pasty people round his office made me LOL!! That used to be me! I live in Sicily where sumer lasts 8 months and the average temperature is 40 degrees. I used to go out smothered in so much sun block that I looked like a Geisha. My brilliant white face reflected the sunlight so brightly that I was causing near traffic accidents. Confused moths fluttered around me in circles.
The following year my new and good doctor put me on a controlled tanning programe to get natural Vitamin D along with my tablet form of it, and I went the brownest I have ever been. I was literally glowing with health. I don't think human instinct is so wrong - what looks healthy, generally is.

[JackieCalifornia]

Barbie,

I hope you take our comments here in the way they are intended:  to be honest and straightforward.

Many (or even most) of us have been dismissed by our doctors as fakers, or emotionally messed up, or having some ailment that will go away by itself if we just stop thinking about it.

Please do not take our comments here to put *you* down that way, or to say that your efforts to get well do not have value.

ALL of us here know what a long road it is to be so sick, to be ignored or disrespected by our doctors, and to work so hard to keep faith in finding effective treatment and a good MD.

I can tell you are excited about the possibilities of Marshall's approach, and it may be upsetting or depressing to hear our remarks and opinions about Marshall.

You will have to think for yourself on this and in all other aspects of Lyme, because there is no one single right way for everyone to get well, and whatever you do will be going against someone else's opinion.  That's how cutting-edge and confusing a disease Lyme is.

Mainstream (nonLyme specialist) docs do not believe Lyme is a serious, long-lasting illness that can be complicated to diagnose and treat.  The sneering and dismissive attitudes almost all of us have been through are painful and frightening.

You may also have been offended or upset by our various comments above about Marshall's approach, in the same way many of us have been offended or upset by so-called mainstream docs.  We all know how that feels and do not lightly make critical comments about any doc who takes Lyme seriously.

The problem is that in any fast-changing area of medicine, there are some odd-seeming ideas put forth by those trying to be creative in helping their patients, but unfortunately there are also frauds and wackos who may or may not mean well, but in any event simply can't deliver on their approaches -- because their approaches to treatment may not work.

Mainstream docs tend to consider ALL docs who treat Lyme aggressively to be wackos.  We Lyme patients are more broadminded, but we have our limits too, and to some of us, Marshall's approach just doesn't hang together logically.

It is for you to decide whether to proceed with Marshall's approach, and to feel free to change your mind if you decide to do so.  There is no right or wrong in Lyme that is like black and white ... so very much of it is in shades of grey, and figuring out how much grey tone is too much is very difficult to do, even for scientists and MDs.

So we Lyme patients are left to figure it out for ourselves.  Marshall may be right, and his approach may work for some people; I don't know.  You will have to decide for yourself.  All we can do is give our opinions, and we don't know everything ....

.... but maybe Marshall doesn't either.  That's what you'll have to decide for yourself.  You might want to read and think about it some more, or try it for a while and see what happens.  We are all on the cutting edge of medicine, and it can be downright uncomfortable.

We support *you* in finding your way to getting well, and you've heard plenty from some of us about not agreeing with Marshall's approach.  

Do what seems reasonable to you, and don't be afraid to change your mind.  Maybe find another Lyme doc for a second opinion about Marshall's proposed approach.  We don't have all the answers, but we are here to give our thoughts and opinions -- and to tell you we understand what you are going through.

You hang in there, and let us know how we can help, okay?  Best wishes to you --

[Ricobord]

There's someone I believe is a naturopath answering some questions on other forums.  In a discussion on low Vit D, she posted this quote:

Excerpt from Linus Pauling Institute - Vitamin D deficiency...

"In vitamin D deficiency, calcium absorption cannot be increased enough to satisfy the body’s calcium needs (2). Consequently, PTH production by the parathyroid glands is increased and calcium is mobilized from the skeleton to maintain normal serum calcium levels—a condition known as secondary hyperparathyroidism. Although it has long been known that severe vitamin D deficiency has serious consequences for bone health, recent research suggests that less obvious states of vitamin D deficiency are common and increase the risk of osteoporosis and other health problems (16, 17)."

[youvegottobekidding]

I didn't want to pile on even more but, since it looks as if we have scared Mandy away and are just talking among ourselves, I may as well also share this.

I had an appt with my LLMD last week and he told me he has now had 3 patients who suffered such severe vitamin D deficiency (which is very common in Lyme disease) that they got broken spines due to decalcification of the bones. Two of these patients were children and one of them got her spine fractured in 3 separate places. Needless to say these kids are in wheelchairs and apparently will need long treatments of IV vitamin D and calcium to heal.  

The doc has put me and my son (who is only 6) both on 2000 IU daily of vitamin D. He makes us have blood tests every 3 months to monitor the level, which he wants at the very top end of the healthy range.