The Marshall Protocol

[ana_22]

I was googling on the net and saw something called the MArshall Protocol, a program that has helped ppl with Lyme, CFS, Fibro, etc.

It lists POTS as one of the things it can help with. Ive kind of speed read through it and it looks interesting to say the least.

I just wanted to know if anyone has tried it? heard of it? have any personal experience with it?

http://www.marshallprotocol.com/

I dont think theres many costs involved apart from your meds and test and stuf done through your gp, so it doesn't sound like a scam thing. Im pretty sure your gp / pcp needs to read the manual and kind of manage you while youre on this program.

This is the only review i could find so far with someone with pots:

Jun 4th, 2006: I have been able to leave the home several times a day etc,etc.

I had a birthday and can remember last year's very well [4mths on MP]. Girlfriends took me out to lunch. I was very ill and barely able to sit there, took days to recover.

I keep thinking last year what I would be like this birthday!!!!.

Well it went like this......Didn't do the kitchen before I DROVE myself to my friend's house, then she drove me and other into the country to an old pub/guest house, we had a great lunch, lots of laughing and talking. Come back to her house, DROVE myself home.. it was NO effort.

Then I took daughter to have her blood tests. Husband was struggling , because of birthday he tried to do a bit of house work for me. I COOKED a simple dinner for everyone. Husband then practiced the art of breaking a lot of MP rules (he is on MP). He become quite ill into the evening. Thrill of all that I was able to do.....took only a half the next day to recover!!!!!

I still have a way to gooooooo, but heading in the right direction

Grace

November 2006:

My POTS was really bad with BP dropping when standing and then the heart and adrenalin pumping madly trying to bring BP up. I have no POTS now, only get a bit light headed if crouching down for a while and stand up too quickly.

My CFS is becoming more like a bad memory as I just keep getting better!!!!

January 2007:

Things are just getting better all the time.

The last few days I have been doing a big clean up around the place. The last 7 years I didn't have the mental, emotionally or physical ability to sort and get rid of stuff. Although I have had enough of it now. But it has been fun and productive.

I have been able to cook the odd meal like the good old days {before cfs}. CFS headache comes and goes, I will be really glad when this finally leaves for good.

I have been doing some heavy {for me} gardening with lots of breaks. Before MP I would have been flat out lifting the mallet or even going to get it.

Slowly, slowly I am starting to be able to multitask again and able to think through more complex matters. I notice the car radio doesn't annoy me as much or as often when I am driving. The latest muscle improvement has been the top of my neck. At the worse of CFS I could have worn neck brace when been driven, as when my DH drove I couldn't support my head properly with his braking and accelerating. As he gets better I am sure his driving will too, as mine has.

Member in Phase 3

More than two year now on MP, boy what a ride. I couldn't never have imagine ever being able to do what I am now doing . Although I still have a way to go, I just keep moving the goal posts. I still have to rest and sit more than I like

I have had a small break out with 'shingles' for the third time, was on my left arm, all ok

Pre MP- the muscles in my back had become so weak that I had rotated my pelvis and it had locked out of place when getting out of a swivel chair. An osteopath had to unlock it.

With MP the muscles involved with this injury have been herx . Late last year I was doing a bit of light gardening and it did it again. Not near as bad. Again the osteopath fixed it. But this time what was really happening was that the herx was re aligning the spine and pelvis as the muscles healed.

Pre MP-I could on a 'good' day sit up in a straight back chair with effort, dizziness. feeling faint. pots etc. On a bad I was unable to sit up all.

Now - I never lay on the couch or recline.

Pre MP-I had become so weak that I was looking at getting a wheel chair, but knew that I was too weak to be out at all. The few metres from the carpark to my doctors was getting harder, with even using the wall as support. At times I would lie down while waiting to see him.

I could not walk against a bit of wind. I had no leg muscle strength or shape. I could only lift my feet just enough to clear the flat smooth ground and place my foot weakly and flatly on the ground. At the mall I moved from seat to seat. Going through the check out was a nightmare. I would be willing my self "Don't faint, don't faint, hang on to some thing".

Now- I can walk swiftly,stop, turn around etc. Do it with out thinking. I go on short walks now and again when my BODY tells me that it wants to move more between herxing.

Pre CFS -I would wear out 1 or 2 pairs of shoes each year.

The last 7 years I have not bought any shoes, except for slippers and light canvas ones to block summer sun, and I threw out my heels. HEAR THIS everyone, I have just bought a pair of proper cross trainers . I needed the extra support because the AMOUNT OF TIME I am now spending on my feet.

I know its long! opinions please!

[firewatcher]

Interesting, here is way more info about it:

http://bacteriality.com/about-the-mp/

[Guest Sandy Sims]

Please do NOT do this to yourself! <down on knees begging!>

GAWD it's SEVERELY unhealthy to drop your D levels this low.

I promise NO GOOD will come of it!

http://heartscanblog.blogspot.com/2008/03/...airy-tales.html

Please read this and think--please think--before allowing a non medical person to treat you thru an easily constructed to be self-serving web page!!

The cases where dropping D levels is theraputic are VERY few--and even then NEVER is dropping D levels this low long term AND taking non-stop antibiotics a plan.. If Sarcoidosis is not for SURE your diagnosis do not do this! Even then PlEASE see a REAL medical doctor FIRST!!

This Marshall fellow had sarcoidosis--as do many of the folks he's prescreened topost on his website--but it's highly unlikely you do as well.

Hope I'm not being ignored this one time for sure.

XOXOXO

Sandy

[Katja]

I was about to post the same link as Sandy. Every unorthodox treatment has its success stories, but it's usually unclear what caused the "success." For example, many people tend to experience chronic illnesses in cycles. People tent to seek out "radical" treatments when they are at their worst. When they feel significantly better months later, it's really impossible to say, sometimes, whether the treatment indeed worked, or if the illness was just running its natural course, i.e. they were on the cusp on an up-cycle to begin with, and would have felt an improvement in their symptoms even without treatment.

[firewatcher]

I too have speed-read through the literature and have LOTS of questions. He may be onto a piece of the puzzle, but the answers are not definitive and it is all too new to be sure of anything. I am giving my doc a link to all this and see what he thinks (He's into alternative therapies, just with caution.)

[bjt22]

Wow....guess this doesn't apply to me as when tested, my levels were barely detectable. As far as I'm concerned, I'd rather keep my intake of vitamin D up as much as possible....can't think of a worse combination than having brittle bones and a tendency to faint or fall over.

[MelissaCrystal]

When I was first diagnosed with POTS I also had a severe Vit D deficiency, and I feel better now that it's up. Having your Vit D low isn't going to do anything good, and I have never heard any credible scientific study saying otherwise. It's really dangerous to find many alternative medicines online from someone who isn't a doctor. A lot of them are very bad, and there are plenty of stories of people dying or needing intensive care because of self-medication or doing phony online research. I just simply wouldn't do it, and I hope posting the article didn't make anyone else want to do it.

[Guest Sandy Sims]

When participating in pain control research many years ago I had several books I had to read and studies to wade thru. The most interesting one was about the placebo effect.

For those unfamilar with this it simply means folks beleive they'll have XYZ effect so they do.

One study used morphine for pain--and placebo (sugar pill).

50% of the people on sugar pills reported signifigantly reduced pain?

Only 5% less than those given morphine?

At this point I realized pain IS controlled by thought--i.e.your mind.

As are tummy troubles, high BP, headaches, and lots more.

So, given this, some people WILL always benefit from ANY treatment--exp if this treatemnt is humanely administered with kindness.

One doc friend told me that he wanted to do a study to prove that chewing pink rubber bands helped women get pregnant--but they HAD to be pink. And he further suggested the benefits would be be increased if they glued pink feathers to their breasts while chewing.

Was a joke--but not really.

Altho this study would at least be harmless--Marshall's "study" can be VERy dangerous for those of us who already, in many cases, have Vitamin D def. and immune weaknesses.

I can NOT say this strongly enuff.

Do NOT DO THIS!!!!

XOXOXO

Sandy

[firewatcher]

In defense of Ana and anyone else who looks at "alternative" therapies, I have to say WHOAAAA! Could this be dangerous? YES! But if you told a cancer patient 50 years ago "We are going to give you chemicals to bring you to the brink of death because the cancer cells will die before the healthy cells, and then stop just before we kill you..." and no one did it, there would be no successful chemotherapy. This guy is NOT a medical doctor, but that does not mean that he does not hold a piece of the puzzle. ALL of us should be under medical supervision and not self treating and diagnosing, but let's face it, how many doctors know SQUAT about dysautonomia? Even the ANS docs don't really know what is going on. If we had a known and treatable disease, there would be no need of this forum. Sorry, if I'm quick tempered on this one, but I'm just looking for answers, just like the rest of you.

Jennifer

[ana_22]

I've had a better read of the Marshall Protocol.....still not a thorough one though!

Like Firewatcher i too have alot of questions! I'm a firm believer in looking outside the square and delving into alternative treatments. Alot of POTS/dysautonomia patients are left disillusioned by conventional dr.s & therapies that i guess its only natural to search for answers elsewhere. Im in Australia, so i guess theres even less accessible specialist knowledge!

When i first went to my cardio he didnt even want to test me for POTS (i told him i had been bedbound for 4 months, had a couple of bouts of tachy, had severe constant nausea & constant dizziness, and generally did not feel well standing!) I had to insist on getting tested for POTS. When it came back positive he simply advised my gp to up my water and salt & said he would not need to see me again!!!!!!!! He even admitted hes only seen 2 cases of POTS in his whole career, imagine having cancer or diabetes or a stroke and hearing your dr has only treated 2 cases EVER! would you think he had all the answers?

Im glad that people are theorizing, experimenting & taking risks in order to find answers!

I've had a quick read of what Dr William Davis has to say about the mp but then again whose to say hes not pushing his own agenda? he's written a book, maybe VIT D pays a big part in "tracking your plaque" (the book he's written) Idont know i havent read it or researched it. Also i bet i could find a negative criticism about any kind of treatment on the net!

The fact that DR.Marshall has lectured at Melbourne Uni (one of the most prestigious in Australia) and the fact that your OWN GP needs to be a part of the team administering the MP is a positive. I think i read somewhere that these trials are part of some process of getting it to be approved by the FDA.

I'm not saying that i think the MP has all the answers (far from it in fact), Im just saying i'm glad that there are people looking into alternative theories (because lets face it the current theories about POTS are not really much HELP) I don't even know enough about the MP to endorse it or rebut it, all I'm doing it saying 'hey look heres a new way of looking at things, what do you think?'

[Guest Sandy Sims]

Guys there's nothing wrong with looking outside the box.

I've been a part of research and control pain without meds these days. Biofeedback was also considered a joke by many--but it worked for me.

BUT--it was NOT dangerous. And the MD and PHD physcologist running the study BOTH followed me--PERSONALLY.

I also use an alpha stim machine to tune down adrenal surges. Again, outside the box new stuff. But again, not possible to harm you. AND FDA approved with lots of MD research behind it.

Look guys I KNOW how bad this *****! HUGE! I live with it daily and have for two years! When I saw this post I jumped ALLOVER IT! IMMEDIATELY. I too want a cure! I read for two hours--looking for any sensible science to explain his "cure." Got a lots of medical mumbo jumbo--a pretty video with photos he spent 30 minutes of my life telling me which were 3D anor 2 D--lots of "We love it" letters on a site he can edit--but no real data. Not even anything close.

I've seen ToNS of docs--and even now at Cleveland clinic it's obvious my "team" includes some docs who don't have a clue--nor want one in some cases. This also *****!

But this guy is not a doctor--not even close. And this therapy is wrong from a couple of directions. Off and on antibiotics are a perfect way to create a host of antibiotic resistant germs--in a body that may well already be immuno compromised??? Why? Then to tell someone to stay def in a vitamin needed for immune response? Someone with low BP to take a BP lowering drug and to keep their BP in the 70/40 range on purpose? GEESH! I'm trying NOT to keep mine that low!!!

This is just awful scary stuff to play with. And he's NOT there to call when it all goes wrong! Nor a doctor to treat you for these side effects anyway. HE even warns you WILL get MUCH sicker for "awhile." And could have serious side effects?

FYI I have all the tests he asked for--a history of 3 of them D25 and D125 on and off vitamins no less--and posted them as his site asks. Am wating for a response to see what they will say. I've read all of his part one stuff--and about part two and three. And am yet to see anything that makes sense? But I DID write to them and will let you know if it ever makes sense. Cause I too want NOT to miss ANY chance at getting better. I just think this one is a 1-a million shot. And one I wouldn't take yet.

Wait a bit--keep watching the progress if it interests you. This IS a good thing to do. I'm watching all sorts of research. But please don't jump on this bandwagon --at least not yet. Try homeopathic stuff first--vitamins -diet --excercise-alpha stim--yoga--give these less potentially harmful things the 2 or 3 years MP wants.

Maybe-by then his work will be recognised--IF it warrants it.

Keep looking for a doctor in your area--mine new neuromuscular doc JUST last month moved to Cleveland clinic in Miami.

BTW I wouldn't go thru chemo either unless I KNEW I had cancer--and KNew a doctor would be watching the results of it.

For sure keep looking tho.

We ALL need a miracle!

XOXOXO

Sandy

[Guest Sandy Sims]

So I just got my response back from the MP folks. Seems I fit --but they aren't taking new people anyway so~~~~

Scary thing is my low normal D25 levels they call VERY high?

My now mid-range normal d125 levels they still call high?

MY once very low D25 they called high?

My once very high d-125 levels they got right.

And yes I'm dealing with an inflamatory process in my joints from this--and all sorts of nerve pain.

But they're not taking people.

Guess that's that.

But I DID send an email and WILL fill out an application.

Why would I do this when I think it's crap?

Because by the time they decide to include me it may not be--they may have something--and I DO try everything!

And they are right in that, for some odd reason, I get sicker when I take D. So I quit. Now I go into the sun which does NOT make me sicker--makes me feel better in fact.

Sandy

Last edited on Sat Sep 27th, 2008 10:37 by cbeachinn

P.Bear R.N.

Research Staff

Joined: Sun Oct 14th, 2007

Location: Ozark Border, Missouri USA

Posts: 163

Status: Online

Posted: Sat Sep 27th, 2008 23:24

Quote

Reply

Sandra, I am sorry you have been though such a bad run around. This is pretty common in TH1 Illness where most medical providers just don't have clue about how sick you really are or how to help you. Having you take D was about the worst thing they could have done for you and reveals the ignorance of most clinicians in understanding D metabolism, chronic TH1 infection and osteoporosis. I will analyze the 3/27/08 lab from Quest. Labcorps can not be trusted to do the test properly as is clearly indicated by your May results. Your repeat Quest labs reveal that your D supplementation had elevated your 25-D to a terribly high level that in turn reduced your 1,25-D level somewhat (but still a bad level) by acting as the seco-steroid that it is.

3/27/08 results:

Your 1,25-D is terribly elevated at 86pg/ml (the population average is 25-29 pg/ml). It is 6.00 sigma high and based on population studies, 100% of the population would be expected to have a lower number.

Your 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.

Your level of elevation suggests inflammation in major organs such as the heart, liver and lungs.

When should I be concerned about cardiac symptoms?

Your 25-D of 33ng/ml is high and reflects your reported vitamin D supplementation. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.

"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.

Your D-tests, diagnosis and symptoms clearly indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?

Most supplements and many medications must be avoided on the MP.

Our clinical study is temporarily closed to enrollment. As vacancies occur, we will admit subjects based on an application. To obtain an application form, please send an email to marshallprotocol2@yahoo.com with 'request MP application' in the subject line. You very clearly fit the profile of one with a TH1 infection.

Best, P.B.