What do you think? Will it work? Perhaps it is another desparation treatment.

What is stopping you from using it?

Offer your thoughts, please.

I just want to learn more about it and asking the question here sounded like a good start.

For a start in evaluating the pros and cons of this, see http://lassesen.com/cfids/Default.htm

I've never done this protocol.

Hypothetically, one test might be to take Vitamin D, D2, or D3 only,and see what happens?
One of the forms of vit.D + calcium--only?
If one gets symptoms and signs, then how would these be interpreted: Herx effect, deficit, or excess?

Consider Mg level. If Mg is low(compare serum+cellular levels), as happens with lyme dis., [babesial infection(s)?],AND taking Vit. D + Calcium with a low Mg level, what happens then?

Consider medical conditions before infection, and those developed as a consequence of previous treament regimens, your TBDs, and all known factors, specific to you.

Consider what factors conduce to vit. D deficit/excess, as applies to you?

Kidney, and other systems/organ functions?

As with anything,these questions are a suggested start in assessing the efficacy and safety of protocol.

pq

[This message has been edited by pq (edited 14 March 2005).]

http://lassesen.com/cfids/raw_survey_results.htm

Is it living all the time in a dark room wearing dark sunglasses all the time with an option of going out for a walk after 11 pm? And for how long?

Can you work anywhere when on this protocol? Usually people work in well lighted areas.

MP requires the following lifestyle modifications, and requires them for an extended period of time (12-18 months, at least): Total avoidance of Vitamin D from food, minimizing sun exposure to the greatest extent possible (cave dwelling), wearing glasses that block 90% of light when indoors, and 99% when outdoors. The psychological strength to comply strictly cannot be underestimated. And you must comply strictly.

On the other hand, if you are as motivated as me to get better, maybe you'll consider the sacrifice worthwhile. Personally, I have avoided all D for 6 months, and have been on the full protocol for 4.

I am herxing MUCH more on small amounts of antibiotics than I ever did on the megadoses of the same drugs rx by my LLMD. I believe I am getting better, but it is a very slow process and I feel worse now from the herx. But in my mind the herx is proof of progress.

I've questioned the (poll) results of a few internet studies, based on the fact that the prior use of antbiotics (and other treatments) isn't taken into consideration - so results can't be attributed to the last treatment used. (and that doesn't matter what the protocol is).

The protocol you're all talking about in this thread has many risks that people may or may not want to take. It should be their choice.
Here are a few of those risks, as I see them:

1) The risk associated with the extremely low dose abx use, and the possibility of creating mutant strains of bacteria that you aren't even targeting, OR
2)
just keeping bacteria in the colonizing mode
(as opposed to replicating) as low dose zith
does with cystic fibrosis.

AND

3) dependancy -
That includes either perceived or real.
As far as I know - even the original small group with Sarc is still using the off-label dosage of olmesartan as an immune modulator, with maintenance abx. And I'm not saying this is a bad thing - if it's controlling symptoms.

4) High dose use off-label of an ARB as an immune modulator-
The jury's out on this use as far as I'm concerned. I expect Sankyo to do a high dose study on this, that may settle the questions.

5) Vit D and light avoidance.
There is avoidance, then there's over the top avoidance.
While some vit D avoidance may not be detrimental, and actually helpfull in some cases-
I have reservations about total light avoidance and what it does to the diurnal and circadian rythyms (hormones, etc) especially in light of new research that's found 480nm (blue) receptors that are activated by that wave lenght and affect the circadian body clock.

6) Secrecy

Now that this protocol has gotten so controversial- i.e. posts on their site are edited or deleted if deemed to disobey the strict rules of faith in the protocol, people have been banned and labeled., the chosen abx and doses for Phase III are kept secret from the public.
Taken all together, its too cultish for me.

Barb
edited to corred spelling.

I would love to direct you to the archives on the original Infection and Inflammation site, where only a few weeks ago you would have found a WEALTH of peer-reviewed research about how ARBs and Vitamin D interact with the immune system in chronic inflammatory diseases. Much of that research would have given you reason to pause before pursuing the Marshall Protocol.

Unfortunately, some anonymous party managed to complain loudly enough to have the I & I site shut down. The archives are lost to us. Months of my own research and that of many others has been erased.

Why had that information accumulated at I & I, and not at mp.com, where it was of obvious relevance to the membership?

Here's an example: I tried to post a simple, un-editorialized Pub Med citation to the mp.com site. The study cited was directly relevant to the thread in question, providing factual confirmation of something mp.com staff had never been found to be true. My post was three sentences long. The link to the Pub Med citation. A description of the study. A quotation of the relevant finding.

This information was deemed so dangerous that not only was the post immediately deleted but I was banned from further posts for my efforts.

If you want a positive report about the MP regimen, I recommend contacting Lonestartick. She did well on the MP, but came to it after extensive high-dose antibiotic treatment. Unlike some, she is diligent about mentioning that, giving an accurate context for her results.

I am confident that we will eventually be able to resurrect the I & I archives, and then you will be able to read the accounts of MANY who tried the MP and had no result, or negative results.

You will also be able to read accounts from former mp.com support staff, myself included, who were initially enthusiastic but left in disgust when instead of "transparency" we found something more like the Iron Curtain.

It seems to me that we are in uncharted territory with this disease, none of us has a map that points us toward a sure cure, and so we depend very heavily on the experiences of others.

Many of us have little choice but to look beyond conventional medical approaches. So there is an issue of trust, of wanting to know that those who propose unconventional remedies do so on a basis of honesty and full disclosure.

In my opinion, the mp.com site fails that test by a very wide margin.

There is more that I would say, but I don't want to put Lymenet at risk for the same ugly tactics that have been used against other sites that dared publicize the more striking problems, contradictions and misrpresentations associated with the MP.

I try to look on the positive side. We have all learned something about the perils of taking an experimental treatment, with very thin evidence for its efficacy against the original target disease, and applying it indiscriminately to a host of other conditions.

We have been given a very powerful lesson about the dangers and distortions of ANY one-size-fits-all remedy for diseases this serious, complex and variable.

The price has been a bit high, so I hope that the lesson is absorbed and we can avoid this kind of thing in the future.

At the link below, you can post your rating of a given protocol(s) that you have done.
I'll post this in the Section called General, as well.
http://health.groups.yahoo.com/group/CFSFMExperimental/surveys?id=1709003

pq

I just recently found the link below that is related to the link above, and whose primary focus is vitamin D, and its roles in health and illness.
http://groups.yahoo.com/groups/CFSProtocol

If you go the message #1, thereby pulling-up
the first messages, you'll get links to fascinating information on the role of vitamin D in its various forms.

Even if your not sick, these links are a must.

pq

[This message has been edited by pq (edited 16 March 2005).]

It has simply vanished!

Paula Carnes was banned immediately after the Chicago conference, and Texlyme_mom is no longer a moderator. Has TXLM been demoted, or did she resign, following the Chicago conference?

I wonder how long it will be before the "Skeptics Corner" disappears too? This from the people who managed to shut Yahoo I&I down!

The powers that be may be able to make good discussions vanish, but I doubt they can stop people from thinking or asking questions.

Although I don't know much about the Marshall Protocol, I seem to remember reading that it involved minocycline.

So far, mino has been far and away the best abx I've ever taken--so effective, in fact, that I can't take it at full dose, because it works too quickly and too deeply.

Several months ago, a Lymenetter who is involved with the Marshall Protocol did suggest taking it in low doses. That is something you would have to check with a doctor. Mino is something I keep in reserve, so that when I've gone as far as I can with a particular abx, or have to stop a relapse quickly, I can take it.

Areneli,
Most chronic Lymies are at most about 8 months in and overall they are having a harder time that the Sarc patients I think. You are supposed to turn the corner in 6 months on the protocol and be in remission in 9-12 months.

I am 6 months in, don't feel very well and simpply can't tell between herxing or symptoms flaring, certainly I am not greatly improved.

I would say it's too early to tell but personally I am not impressed with the lack of results.

quote:

---

Originally posted by Lonestartick:
Has anyone else noticed that the entire "Off Topic" forum at www.marshallprotocol.com has disappeared?

It has simply vanished!

Paula Carnes was banned immediately after the Chicago conference, and Texlyme_mom is no longer a moderator. Has TXLM been demoted, or did she resign, following the Chicago conference?

I wonder how long it will be before the "Skeptics Corner" disappears too? This from the people who managed to shut Yahoo I&I down!

The powers that be may be able to make good discussions vanish, but I doubt they can stop people from thinking or asking questions.

I wonder what they're hiding over there?

---

There are many other unapproved treatments or alternative therapies that do not evoke any controversies. So, why MP has so many adversaries? Can somebody explain?

[Note that they are forming a "read only" version of the "pertinent information" from said fora.]

I suspect you don't hear about people having trouble b/c the few posts that appear to report complaints (e.g., allergic reaction to mino, B12 issues, liver problems) are told they aren't following the plan or that it is a herx. Someone was told that it is impossible to be allergic to mino.

First, this person is an electrical engineer. I too have a PhD, but regardless of my research in other areas, I don't proclaim myself to be an expert - it is not appropriate. To use your PhD in a context outside of your original specialty requires "respecialization training." You go back for a shorter period of time and get the relevant training for the new area.

Also, we in PhD land avoid using "Dr." when we are doing medical related research with patients to avoid confusion. I am concerned that not everyone knows this person is a PhD in a non-bio/non-med field and not an MD.

When the skeptics corner existed (actually I was reading it last night) the lack of tolerance to questions and challenges was astounding. Those of us who do research welcome this. Your hypothesis is only as good as the numerous challenges it can withstand. When a challenge cannot be accounted for, you modify the hypothesis and move forward. Science is malleable and meant to be challenged. This does not appear to be the spirit there. People seem to be banned if they pose a challenging question/set of data/plausible alternative hypothesis.

What concerns me most about this is that someone can only make an informed decision about trying this proposed treatment by knowing the positives AND the negatives. If the negatives and challenges are minimized, deleted, or banned, how can an appropriately informed decision be made?

As for the rigid adherence (no supplements, no other meds) to said protocol, purportedly it is b/c they want to see the effects on Lyme pts and others. That means it is an experiment. Has a single person signed a consent form? An experiment with human subjects requires a consent form fully informing someone (A) that the situation is experimental and (B) of the possible risks. Consent forms err on the side of naming every risk no matter how unlikely it is. Clearly that is not the case, but at a minimum there should be some sort of warning: this treatment is experimental, potential side effects are blah blah blah, the recommended drug is an off-label use at 4X normal dosage, etc.

A few months ago I heard about this protocol and wanted to check it out. I'm very ill and have trouble with Abx allergies but seem to tolerate low dose doxycycline, so this seemed interesting. I lurked there for quite a while, reading many many posts. As a person involved in human subjects research and as a scientist, I was dismayed by the issues I have raised above. Moreover, the science seems to me to have some questionable assumptions (e.g., all bacteria involved are intracellular, no Th2 component (or not warning people who have a Th2 component such as asthmatics)).

Independent researchers with training in the appropriate fields are going to have to produce compelling data regarding the safety and efficacy of this protocol before I would try it. The way it is currently being approached raises too many red flags for me.

People with Lyme that appear to be doing well with this treatment may be in the minority. We simply don't know b/c people who do not do well with it don't appear to be able to clearly state that or they simply leave. Reports of such data appear to be treated as irrelevant or confusing. Moreover, we don't know the level of pre-existing health for most people (heavily treated and much better before starting this or very ill). That too may have an important role in who benefits and who does not. Also, since antibiotics help infections and people are on very long-term dosages, that may be what eventually helps folks (in spite of the LT overdoses of the other drug). That is certainly an equally plausible hypothesis particularly if benefits occur in less ill folks.

In short, any success data that are posted mean nothing without the context of data reporting problems/failures. Without knowing that, no reasonable assessment can be made. Any experienced, educated researcher knows that to be a fundamental tenate of science. And the robustness of the underlying hypothesis also needs to be assessed. That cannot be done in the absence of insightful questions and challenges.

I also, to some extent, I understand the role of censorship: they don't want patients on MP to modify the treatment on the basis of these critical discussions. These discussions were removed to protect adherence to the protocol.

I am sure, however, that the discussions, even if presently removed, will be used for future modifications and development of this treatment.

Please note that such an experiment in a form of a clinical trial wouldn't stand a chance of ethics approval these days (as the world and the medicine has changed) and Lyme disease was discovered too late. Yet, these experiments are needed to expand our knowledge of the disease and develop possible treatment.

MP is actually a positive activity from a point of view of a Lyme patient. It is an underground research but such a research is better than none. Please don't cut the branch that we sit on. That means that encouragement is rather needed than hostility.

How many of us use `underground' treatment recommended by Dr. Burrascano? Perhaps there is also time to do underground research that the mainstream medicine has neglected to do at the right time to our disadvantage.

Please also note that some particular patients did get through their local ethics committee approval before their physicians agreed to prescribe MP treatment for them. I personally know somebody who had to get through it.

Regarding the title of Dr. used by Mr. Marshall I don't have a problem with it as its meaning was very clearly explained in the main documents of MP.

I have never investigated the merit of MP so I am not getting into it, yet.

In your profile, copied below, you state that you are a "research assistant, student."

The term "research assistant" might presuppose that you may have had, or are currently taking courses in Empirical Methods, and Statistics; in other words,your either familiar with, or know Experimental Design, and Statistics.

If this is the case, then apply the foregoing knowledge/experience to the Minocycline + ARB + X + Y +...+ Z, protocol, and decide from there.
X,Y, and Z represent, what other things the experiment involves, e.g. avoiding sun light,and so on.

This would help mitigate against an infection-induced propensity to suspend logic, and judgement,and make choice(s) from a stand point, or place of fear, or when emotionally off-balance, if not a state of emotional terror, and desperation for surcease from unrelenting symptoms,that this multi-organismal infection induces.

pq

Date Registered: 06 January 2005
Status: Frequent Contributor
Total Posts: 284
Current Email: [email protected]
Homepage: http://
Occupation: research assistant student
Location: Saskatoon, Saskatchewan, Canada
Interests:
ICQ Number:
neli,

[This message has been edited by pq (edited 17 March 2005).]

[This message has been edited by pq (edited 17 March 2005).]

Operative word being OPINION.
Opinions should not be put forth as facts.

A valid theory will stand up to scrutiny, and if proposed to the public at large, then there will be discussion, and public discussion should not be censored.

Duramater:
has written an excellent post about
accepted scientific protocol, validation of theory, objectivity and the use (and extended use) of the title of Dr. when one has a PHD.

Areneli:
I'm not sure if 'controversy ' is the correct word.
Several months ago, this very topic had to be stopped on this site because everyone got so emotional about it.

SKY:
IMO, I don't think any of the posts are 'hostile'. Examination of a new protocol
or having a difference of opinion shouldn't be viewed as hostile, and I don't think that questions should be viewed (or deemed)as negative or focusing on the negative.

The truth is the truth - it's neither negative or positive.

Barb