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Any thoughts on this:
http://www.marshallprotocol.com

Resonates with some of the MS / multiple pathogen "conspiracy" theories

Bouncing through the links I came here http://autoimmunityresearch.org/projects.htm. The antibiotic discussion is in itself interesting but, this considering the research method, I find very interesting:

Ongoing research includes a Internet-based, phase II clinical trial of a succesful antibiotic therapy for sarcoidosis (at SarcInfo.com). Currently the study is supporting a cohort of nearly 200 sarcoidosis patients. Two papers have already been published describing the preliminary results:

Marshall TG, Marshall FE: Antibiotics in Sarcoidosis - Reflections on the First Year.
JOIMR 2003;1(3):2 http://www.joimr.org/phorum/read.php?f=2&i=38&t=38
Mangin M: Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients.
JOIMR 2004;2(1):1 http://www.joimr.org/phorum/read.php?f=2&i=51&t=51

(my emphasis)

From the first paper :

Ours is a Phase II observational study. Many of the patients in this cohort are Health Care workers (Physicians, Nurses and ex-Nurses), and thus are not necessarily representative of the patient population as a whole. Therapy was prescribed and monitored by the patients’ personal physicians. Since the recruitment and ongoing support was provided over the Internet, all patients needed to have a level of education sufficient to operate Internet-capable Computers.

These factors are all capable of introducing bias into the study results. Further bias could be introduced by the lack of a standardized results questionnaire (it was adjudged impractical to produce a standardized questionnaire which could meaningfully evaluate a heterogeneous cohort of Cutaneous, Cardiac, Pulmonary and Neuro-sarcoidosis patients).

To compensate for these biases, extreme care was taken to document adverse events, especially adverse outcomes, and correspondence was publicly logged and reviewed by both investigators.

Despite these reservations, the remission induced by this Antibiotic/ARB protocol was dramatic, and it is unlikely that any of these methodological limitations were sufficient to have skewed the study’s conclusions.

First thought:: So anyone know of any Internet-based studies in the MS field? Other than of course the ad-hoc personal type studies that get posted on boards such as this (although other boards are obviously inferior eh Arron ? ) The net IMHO has given the opportunity to do research in a new way - possibly cheaper with wider, bigger sample sizes, without geograpical bias ... ... ...

Second thought:: Sorry to mix up a couple of threads (cf. http://www.thisisms.com/modules.php?nam ... opic&t=686)
From the second:

The Marshall Protocol (MP)[1,2] uses specific combinations of antibiotics in a pulsed regimen along with an angiotensin receptor blockade and avoidance of Vitamin D.

Anyone spot why the avoidance of Vit D?

Resonates with some of the MS / multiple pathogen "conspiracy" theories

Don't know about conspiracy theories. Who are the conspirators?

I had a quick glance through the info. about the Marshall Protocol, and much is only relevant if one has sarcoidosis. (especially considering the avoidance of vit d!) Well, since I don't, and I have a blood pressure of only 102/68 so I don't think angiotensins would be of much use to me, so I think I am better off sticking with my regime, which put me in this so called total remission* in less than a year, without needing to totally hide from the sun. This incidentally, would also apply to Lyme disease.

* By this I mean absolutely no disease activity but still some recovery from existing deficits needed.

Sarah

I think it's more interesting due to a common thread of auto-immune (sometime? often-times?) of many flavors is due to one or more pathogens.

The road to clearing those pathogens maybe different.

Hello,

In Dr. Marshall's opinion, high levels of a hormone called 1,25–dihydroxyvitamin-D allow CWD bacterias as Chlamydia Pneumonia to trick the immune system which as such is not able to get rid of the infection. As such, in his opinion, the first step to get better is to try to lower the level of this hormone mainly by lowering intake of Vitamin D, which is the opposite of what many MS patients are doing, including myself until a month ago.

To determine whether you are suffering from a Th1 infection, you have to get your 1,25–dihydroxyvitamin-D level tested (You can find more information on the following link http://www.marshallprotocol.com/forum2/366.html, it is very important that the blood sample is frozen until testing else you will get false results). So that is what I did and guess what my 1,25–dihydroxyvitamin-D level is at 52pg/ml, which is very high (99% percentile). I'm not sure whether this supports Dr. Marshall's theory but clearly I don't need any Vitamin D supplements as many vague MS studies are suggesting.

I would like to determine whether these high 1,25–dihydroxyvitamin-D levels are common in MS patients so I hope other MS patients will get them tested and report them. If so then clearly there is a role of this hormone in the disease process and might be a target for treatment as Dr Marshall suggests.

Best wishes,

HappyDaddy,

The point of taking metronidizole (flagyl) in my husband and other's regimes is to actually kill the C Pn. This is why it is taken in pulses rather than continuously. The other antibiotics are merely bacteriostatic. As I pointed out above, Marshall's treatment is basically concerned with sarcoidosis and to my mind, since levels of MS are far higher the further away from the tropics you are, the lack of vitamin d link seems indisputable, so I for one won't be bothering to get myself tested and will carry on taking high levels of vitamin d. It seems to be doing me more good than harm. Remember that as an SPMS sufferer, I should be gradually getting worse, not better.

Sarah

Hi Sarah,

Thank you for your reply.

I think that the two protocols are designed to do exactly the same, namely clear your body from CWD bacteria and if brought together might result in an even better protocol.

Dr. Wheldon's protocol uses a combination of antibiotics (tetracycline: Doxycycline, macrolide: Roxitromycine) to push the bacteria in an anaerobic state followed by monthly pulses of metronidizole (Flagyl) to kill off the bacteria.

Dr. Marshall's protocol uses a drug called Benicar to block the receptors for a hormone (Angiotensin II), which the bacteria seem to need to hide from the immune system and then uses the same family of antibiotics (tetracycline: Minocycline, macrolide: Zithromax) to control the bacteria and allow the immune system to kill them off.

So what if we could combine these three essential ideas:
1. Benicar to block the receptors for Angiotensin II hormone
2. Antibiotics (tetracycline & macrolide) to push the bacteria in an anaerobic state
3. Metronidizole (Flagyl) to kill off the bacteria

This protocol holds the promise to be better then the two individual protocols and might allow lower doses of the antibiotics. Benicar has also the potential to reduce the effects of Herxheimer reactions.

I'm very grateful to David for showing me the way to potential recovery. I just think that we have to keep an open mind to learn from the work of others. Sarah, can you please present this idea to David? Thank you.

Best wishes,


PS. The vitamin D question is, in my opinion, less essential to the Marshall protocol applied to MS and is still controversial since lowering 1,25–dihydroxyvitamin-D will reduce the number of immune cells available to kill off the bacteria but at the same time will present them with less opportunities to hide inside these cells. This also might explain a possibly different role of vitamin D in the prevention and the treatment of the disease MS. The following link is the best easy explanation of the Marshall Protocol that I could find: http://www.wehelpwhathurts.homestead.co ... atory.html.

Hello HappyDaddy,

Yes, you may well be right. You are certainly right about the two protocols being designed to do the same thing. I must admit to rather disregarding it at first partly because of the vitamin D question and also because I couldn't see the point of taking Benicar if you don't suffer at all from high blood pressure. Also, it must be said, that by the time I started posting on this board, I was only months away from starting the two weeks on, two months off treatment and had done so well, I couldn't see the point of looking any further. I think in my case also, at first, I didn't have time to look around wondering about the best course of treatment, or rather David didn't: I was convinced I was getting better and didn't even need the scan, until I saw the scan images, that is! The reality was that I was deteriorating so rapidly that treatment had to be started straight away, or I would by now need 24/7 care.

Now, for someone with a much less advanced disease, this might be a good option. Am I to take it that this is the course you are choosing to take? If so, it would be good to have a bit of variety in the Regimens section, to show people what other options are available. At the moment we have various people who have started on David's treatment, soon to be followed by someone on Dr. Powell's regime, using the Vanderbilt protocol and of course, OddDuck's regimen, which has worked very well for her.

Take care and let us know how you are progressing!

Sarah

Hi Sarah,

After reading about your experiences, I started on David's treatment about 3 months ago. I must say that it has been a confusing period and sometimes it is hard to say whether you are really improving or you think that you are improving just because you want it so much. That is the reason why I haven’t been posting in the regimen section yet.

Now, after 3 months of Doxycycline and Roxithromycine, I can say that I had some symptomatic improvements but there doesn’t seem to be a continuous improvement like you have experienced. It seems that my body has not yet decided whether it wants to heal or not. So sometimes my symptoms are better sometimes they get worse again. Overall, I do think that I’m better of than 3 months ago. I would say the disease is certainly not getting worse but seems to be hanging around that same level and that is already very good news. I just started my first 5 days of Flagyl. I’ll let you know the effects of that in a few days. Also the high doses of antibiotics are starting to weigh on my liver as my blood work is showing so that is worrying me since I’m afraid to have to stop the treatment. I didn’t experience a real Herxheimer reaction neither.

So all that got me thinking. Why do different persons react so different on antibiotic treatments? It seemed to have helped you into full remission, for me it has only stabilized my condition and I’m sure that we can find the full spectrum of reactions from cure to zero effect. There does seem to be a correlation with the severity of the Herxheimer reaction. So this would mean that if you don’t experience a Herxheimer reaction, you shouldn’t be expecting much. So the missing link seems to be that for some people the bacteria have found a way to protect themselves from the antibiotics and your immune system and since the bacteria are not dying you will not experience a Herxheimer reaction nor will you improve.

The Marshall Protocol holds the promise of having found that missing link and you can assess it by getting your D-metabolites tested. My case does support the theory since my high 1,25-dihydroxyvitamin-D level could explain the absence of the Herxheimer reaction. At the same time this result supports the theory of Th1-inflammation caused by a bacterial infection, be it Chlamydia Pneumonia or another CWD bacteria. As such, I will probably switch treatments in the near future unless the Metronidizole really changes things for me.

I hope you understand why I would encourage people to get their D-metabolites tested. If we can find a good correlation between these and the responsiveness to antibiotic treatment (or the severity of the Herxheimer reaction), we might be a step closer to solving the mystery. Also this is actionable and might result in a better treatment for the non-responders. We have to act as a group because we are our best chance to getting better.

Best wishes to all,

Hello HappyDaddy,

After reading about your experiences, I started on David's treatment about 3 months ago. I must say that it has been a confusing period and sometimes it is hard to say whether you are really improving or you think that you are improving just because you want it so much. That is the reason why I haven’t been posting in the regimen section yet.

First, let me say this: The first six months were something of a roller coaster for me, which is why I didn't start posting anywhere until after this time. I didn't have the confidence to do so until after my second scan, showing the improvements in black and white. When I started the treatment my disease had become so rapidly progressive that I really am not exaggerating when I say I would need 24 hour care by now. This is after a long period when the MS appeared to be so benign that I didn't really feel affected by it a lot of the time. If I had started posting straight away, my postings would have looked very different, but since this is all now written in retrospect, you tend to forget the worst moments, or at least put them to the back of your mind. Thinking back to this time last year, though, for a few days I was in absolute agony, with pains in my right arm and across my shoulders. I couldn't go into my studio to do any work but sat in the kitchen crying. When the pain wasn't there, though, I felt so much better than previously. Before I started the treatment I was never in any pain. If I had been keeping an online journal, I can't imagine what I would have said then! So, what I mean to say is that although I was effectively improving all the time, it often didn't feel like that. I would have thought, "So what if my plantar reflex is vastly improved, what does that mean if I am I so much pain?"

So, by all means get your D-metabolites tested, anyone who wishes to do so. I am still worried about the lower levels of vitamin D which people with MS all to often show, though. Since they are more likely to fall over than a lot of people, they are more likely to break a bone, so need more than adequate amounts of vitamin D to potentate their calcium intake. Despite being tall, long-boned, thin and fair skinned, I have never broken anything, but things might change when I approach the menopause if I cut down on my vitamin D, especially since I have taken to using my bicycle again.

I wouldn't discount your theory at all, but would just say that it needs to be thought about very carefully by anyone thinking of following it, remembering that the bacteria are just held in non-reproductive mode until the bactericidal metronidizole is begun. In the non-reproductive mode they will gradually die off as they reach the end of their normal life span, or the life span of the host cell in which they are hiding, but it could take years.

Sarah

I agree that anyone considering the Marshal Protocol has to be very careful.
I found on the WEB that Marshal has a PHD in Electrical Engineering!!!
And also found this persons's comments on the Protocol.
He was actually removed from the Marshal site


Date: Thu, 27 Jan 2005 17:46:43 -0500
Reply-To: mods@co-cure.org
Sender: ME/CFS and Fibromyalgia Information Exchange Forum
<CO-CURE@LISTSERV.NODAK.EDU>
From: "Ken Lassesen <ken@LASSESEN.COM> via Co-Cure Moderators"
<mods@CO-CURE.ORG>
Subject: MED: Multiple reports of Addison´s disease from Marshall
Protocol.com
Content-Type: text/plain; charset="iso-8859-1"; format=flowed

Given the small number of patients doing MarshallProtocol.com (at last count
~ 120), the number of cases reported is non-trivial/
I have received reports or confirmed symptoms cited on MarshallProtocol.com
posts to cause me to believe that, IMHO, in many clinical studies these
results would have resulted in immediate suspension of the trial.

One of these patients has granted me permission to quote from his experience
(the author is known to me and thus I believe is creditable).

"Addison´s disease is a life-threatening situation, and calumniates in what
is referred to as an adrenal crisis. Following 5 such adrenal crisis, and
despite having made my problems clear on the official Marshall Protocol
site, (from the very first crisis), I felt my symptoms were ignored by the
senior staff there who dismissed my symptoms as a herx (Bacteria die off)
and following a long debate I was forced to reframe from posting messages on
the official site.

Following these events and now having a confirmed Diagnosis of Addison´s;
and having the hindsight of spending time reading up about the possible
connections between these ARBs and Addison´s, and further from learning
about others who have also described very similar problems to me, who were
also treated as I was on the official MP site, I have decided to go public
with my concerns.

SC: My tests results for ACTH arrived today and were 10 times The lower
level. AMAZINGLY my light sensitivity has disappeared with Cortisone
supplementation IMMEDIATELY. As Pä here also mentioned the same happened to
her upon cortisone supplementation.


>From what I am learning, one of the most common indicators of Addison's Is

that the body obtains a sun tan (strange that). What with this being a very
common symptom of Addison's and finding that at least two people here who
are CONFIRMED to suffer with ether Addison's or Adrenal insufficiency have
mentioned that the sensitivity to sun went with cortisone treatment, Id be
surprised if what is being related to by many here is sun induced bacteria
HERX, as claimed by TM but rather a hormonal crisis being brought on because
of lack of adrenal hormones.

Many of the people who have complained of so-called Light Herx, here and on
the MP site have described symptoms exactly as I had that were clearly not
herx but rather related to hormonal changes. If anyone looks through the
battles I had on the MP site, you will see many arguments I had with those
'in the know' with me explaining to them that what I was experiencing was no
Herx but hormonal. Contrary to their professional opinion.

The other interesting thing I learn recently (from those in the know about
Addison's) is that some drugs are well known to deplete ones reserves of
Aldesterone and Cortisol. I will over the next few days try and compile some
more evidence to show this. But if you read between the lines I think we
might all seriously consider having a good look into the possibility that
what is noticed as sensitive to light could be being caused because of
Adrenal hormones insufficiency.

[...]

I have placed his full comments (with permission) at
http://www.lassesen.com/cfids/advised_reading.htm

So be careful of what you find on the WEB especially if it is medical advice from a non-professional!

Well, I never! I thought that advising people with MS to watch their vitamin D intake was a strange concept, so I never even bothered to look that closely into it, but yes, now that I have, I must agree wholeheartedly, that you should beware of any medical advice given by non-medical people. He says his PhD was in 'biomedical engineering' (?) but that doesn't make you a doctor. The use of the word 'biomedical' is obviously intended to make him sound a bit more 'medical'. He does at least say "I am a researcher with a PhD, not an MD, and I cannot treat patients directly." I suppose that is something.

My main worry about people with MS following this regime, though, remains the cutting back on vitamin D. It goes against the advice of virtually everyone who knows anything about MS and seems positively foolhardy to me.

Thankyou Tomi,

Sarah

Great investigative work!

ALWAYS ALWAYS ALWAYS confer with a medical doctor prior to beginning any treatment, if for nothing else than to have a medical professional aware of what is going on.

I suppose that my hope of having a constructive discussion of the impact of vitamin D on the immune system is not very realistic anymore.

Anyway, I just wanted you to know that because of my very high level of 1,25-dihydroxyvitamin D3, my doctor has forbidden me of taking any vitamin D supplements since I'm at increased risk of hypercalcemia (not that pleasant a disease). Seems that getting the test done wasn't that stupid.

This might also be quite interesting. Seems that 1,25-dihydroxyvitamin D3 is quite a strong immunosuppressant (check out: http://www.ncbi.nlm.nih.gov/entrez/quer ... s=15584887). Very good if you want to treat MS as an autoimmune disease, not that good if you are fighting a bacterial infection as Chlamydia Pneumonia.

So, here is my question. Does anybody has an idea what can cause elevated levels of 1,25-dihydroxyvitamin D3?

PS. I appreciate this site because it is a forum where knowledgeable people have an open discussion on new ideas. The first rule of coming up with innovative ideas is not to attack on new ideas, which in your opinion are incorrect. Let’s not fall into the trap of my or Sarah’s neurologist who couldn’t see past the autoimmune disease theory.

PPS. Regarding medical advice, the only person qualified of giving you medical advice is your doctor not the INTERNET. This is just a source of ideas, which you can present to your doctor!!! You are playing with your life if you are taking drugs, even supplements, without getting yourself followed by a doctor on a regular basis.