You will pardon me, if my irritation is beginning to show. First of all, Paul, may I point out to the members that you are by your own admission in a note to lymenet not even on the Marshall Protocol, yet here you are telling people who are trying to figure out what to do what to do. You have even openly and in writing called into question the objectivity of Dr. Marshall. I would not normally do this, but, why, may I ask are you here?

I would point out that nobody ever told me about nor did I ever see any reports of the problems involved or the in my view extreme position taken in regard to vitamin D or the rationale for it. There were repeated and constant reassurances that benicar was absolutely safe at the massive doses proscribed in the MP. I have noted to the membership that I cannot take massive doses of antibiotics. I have severe gastritis/colitis and god knows what else as a result of a totally botched and idiotic chaotic mess that went under the rubric of antibiotic therapy. Now I learn that the reality of the Marshall Protocol is really something quite different from I had originally been led to believe.

As for this business of seriousness, I have posed a series of quite specific questions which nobody seems to have read much less answered. I repeat I have a reading of 39 1,25 vitamin D. In reading over Dr. Marshall's remarks on the subject I noted that he stated that a desireable level of such a vitamin or hormone was 36 or less. My point being that just how difficult would it be to reduce such a level as mine by a minimum of three points or to whatever level is desireable. It would seem that it would not be all that difficult. The question is have the modifications I have put in place had any effect or any desireable effect or are the symptoms that I am having due to something else. It seems to me that given the complexity of the situation and all the variables just to parrot back vitamin D as the answer to everything is to take a simplistic approach to the matter at hand.

Again I asked what is an optimal level for vitamin D 25. My level is 36. After I was tested,I removed all milk, and other foods fortified with vitamin D from diet. I rarely ate fish before and did not eat many eggs, and the few that I do consume are in cooking. That reading was taken at a time when dietary changes had not been put into place. I am seeking some scientific benchmark or standard in order to have some idea of the amount these vitamins need to be reduced. If you say that you have no idea, that you must eliminate all vitamin D period then you have no basis, I submit for saying anything.

If you are alive and in South Carolina unless you live in a cave and are a hermit you cannot avoid sunlight, either directly or indirectly. Even in closed buildings light and sunlight are there in some form or other. Further unless you are a vegan you cannot avoid some indgestion of vitamin D in some form or other. As for giving up walking, that is out of the question for reasons I have given.

I will repeat something that does not seem to have been noticed. Just because I am not always solemn does not mean that I am not serious. These questions raised were a logical and rational approach to the question at hand. How to reduce the vitamin D levels in a sensible and rational manner and to understand just how much they need to be reduced that can be measured by some kind of objective criterion.

This logically leads to the question of just how dangerous is benicar. I myself have been walking in the last 45 minutes of so before dark, when there is no direct sunlight and in an at least partially shaded area. I have further begun wearing much more often the sun glasses I now have, particularly when riding in or driving a car. Yet I have noticed that I am still have quite severe nausea which is getting worse. The gastritis and abdominal problems are still pronounced along with all the general lyme disease symptoms. Is nausea etc a symptom of benicar? Or is it due to some abdominal infection? Are these symptoms due to a herx or die off now that I am on 25 mg of minocin every other day? I notice that a short time after I take it I start getting much sicker. At a certain point some of the symptoms will begin to subside. The only question, of course, which you might be able to answer involves nausea as a symptom from taking benicar.

I have certainly reduced the amount of dietary vitamin D about as much as it can be reduced and do not see how much more could be done. I have significantly reduced exposure to sunlight to a level beyond which not much more could be done. The test I had indicated that level for that is the one that is nearest a desirebale minimum in any case. Yet I am as sick as I have ever been and seem to be getting sicker. This makes absoutely no sense at all.

All of this may be unreasonable. You people are not doctors or MDs and you have not examined me nor do you know anything about my case or history. But it may be possible for certain of these questions to be answered.

His reply:" Since you've asked why I'm here, Thomas, I'll be happy to answer: I came here to learn. Like the majority of the 700+ members of this site, I am not on the MP. That is not, at this time, a requirement for site membership. Indeed, it was not a requirement to serve on the staff here, which I did, until quite recently. I probably replied to your post out of habit.

I am sorry that whoever encouraged you to try the MP did not give you an accurate picture of it. That is certainly not the fault of the board staff here, who have said in just about every way humanly imaginable, over and over and over again, that avoiding sun, bright light and Vitamin D are integral aspects of the protocol, not optional items to be discarded.

I have my own thoughts about using the MP to treat Lyme. I have expressed them here and elsewhere, and I have made it clear there are my thoughts, the basis for my own decisions. I have not advised a single patient considering the MP against it. I have certainly never done anyone the disservice of suggesting they implement the MP incorrectly, in a manner guranteed to fail.

Expressing irritation at the staff because you neglected to read even the most basic description of the MP, and are now stunned to learn its actual content, makes little sense. Educate yourself, learn what is involved, and make a decision. That is what everyone else has had to do, and I see no reason why you should be any different."

As I say, I do not suffer fools gladly.

Thomas Parkman
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Joined: Wed Oct 27th, 2004
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Posts: 10
Posted: Mon Nov 22nd, 2004 11:48
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I submit for information the following:
Well Paul, I can only tell you that I think you need to get over your sanctimonious arrogance. I have been thinking about the Marshall Protocol for months and doing what research that I could. I have been looking for months to try to find a doctor somewhere who could prescribe it and only after the greatest difficulty have I found one some 240 miles from my home over in Atlanta GA. As I cannot drive that distance by myself I have had difficulty finding and scheduling with someone else and the doctors office. Nothing I had ever read prepared me for the fact of how much worse things are supposed to get. I still do not know and have been trying to figure out to what extent this is something to do with either the benicar, the minocin, the sunlight and vitamin D which I have tried to reduce to the degree reasonably possible or its it some other factor such as the fact that I may have some kind of antibioitc induced infection.

So at the moment I am very ill and very upset by all of this. I have been trying to deal with all of this in a rational and orderly fashion and have been trying to understand areas that have not been clear. I have asked questions and hopefully am getting explanations that make sense which I can act on. I have been very ill even off of all the antibiotics and not on benicar or anything. I have tried to deal with this with humor and that has been slammed. I have tried to deat with it with that seriousness which you seem to think appropriate and to ask what I think are logical questions only to have that slammed. I really think if you would just not say another word to me or about my problems under any circumstances I would appreciate. I do not see that anything you have said is of any use or value to me or anybody. I do not need people like you in my life anywhere. So kindly go and inflict youself on some other very sick person since that seems to be your game. May I suggest instead of playing the games you are playing why don't you go and try the protocol yourself. You might then begin to understand some of the real problems people are encountering. You know, I suppose I am something of a naive person. I have never really quite understood what the word troll meant. Now I do. I find such a person beneath contempt.

I am sorry that you have been treated like this.

If you remember Scott, the veterinarian who posted here as free2reckon, he has a Marshall Protocol list on Yahoo that would be a good place for you to get the latest information (notice I didn't say good, because who really knows what is good or accurate information yet since the MP is still in its infancy).

Here is the URL where you can join:
http://health.groups.yahoo.com/group/infectionandinflammation

Wishing you the very best,

Even though, I too, am nearly too sick to write...I felt compelled to post here.

I'm not on the MP and therefore feel I have no business commenting on it...and won't.

I am very sorry for the distress this person is causing you. It is hard enough just trying to deal with the sickness itself without having people, who should be concerned and compassionate about others seemingly trying to make it that much harder on us.

So many times I posted messages and then I forget about even posting them and maybe that's a blessing in disguise at times. It could be that I've had some responses like you have and I've just missed them....due to lack of brain function.

In an ideal world, we would'nt have to deal with people like this...but that's not reality. I have'nt seen the posts you were referring to, but do feel the same as you about it. If they can't say something helpful...or in the very least, decent, they need to avoid commenting.

Sometimes, with our sicknesses, we may inadvertantly say something hurtful, but I think that should be the {exception} and not the {rule}.

Please try not to give any weight to ignorant comments. It will only make you sicker. It will get your focus on them and off your healing.

Wish I could be more helpful.

God Bless You and Keep You In His Care,

If you were misled, why are you not focusing your displeasure on those who misled you? All I did was tell you the truth.

You seem to find a great scandal in the fact that I am not on the MP, yet feel free to post about it. I did not volunteer myself to be on the MP board staff, I was asked, because I was able to translate some of the science into intelligible English. I applied myself to reading the scientific papers, and asking Dr. Marshall questions to make sure I was getting things right. I did it, because I thought the MP might be the answer many have been looking for.

Yes, I now have come to doubt that. This is what happens, when you immerse yourself in a new theory. First, you learn to understand what it intends to explain, and then when you've gotten that you start to ask yourself whether it really DOES explain it. I am not convinced that the disease model of the MP explains Lyme disease. That is an honest opinion, not a character defect.

You say you do not suffer fools, yet all I can glean from your post is that you do not suffer people who tell you something other than what you want to hear.

You say it makes no sense that you would be feeling even worse after a brief attempt at the MP. To be fair, feeling worse is exactly what the theory predicts for the first several months. If you read the progress reports, you'll see the refrain from moderators: the point of phase 1 is to get better, rather than to feel better.

Perhaps what you cannot suffer is complexity. Yes, I think the MP is worth talking about, important for what additional light it may shed on our illnesses. No, I am not convinced it is the right treatment for me, nor would I assume it is the right treatment for other patients whose symptom severity and lack of prior treatment are similar to mine. These are not mutually exclusive positions.

I am afraid you will not like the yahoo site much better. My mixed view of the MP is more the rule there, than the exception. A whole lot of people who have spent time trying to make sense of this protocol have ended up sitting on that fence: yes, there's something to it, but no, probably not quite as much as some of its staunch supporters would suggest.

I have adopted the parts of the MP that you find the most unreasonable: avoiding sunlight, bright light in the eyes, and vitamin-D rich foods. There is no contraindication between doing those things and taking advantage of more aggressive antibiotic treatment, which both I and my LLMD feel are required in my case.

What doesn't work, in theory and also in practice, is taking Benicar while not complying with those restrictions. I urged you to avoid that mix, because it has made many Lyme patients horribly sick.

Finally, you are quite right that I have questioned how the MP is presented. I think the treatment is clearly experimental at this point, and that is how rather a lot of people regard it. Dr. Marshall takes a different view, and so we disagree.

I cannot see how any of this warrants your repeated personal attacks. Despite what you say here, I have not attacked you, at all. I have tried to provide you with accurate information on which to base your decision. Even if I were on the MP, there is no reason to assume my experiences would be similar to yours. My replies to you were based on months of diligently reading every single progress report from every single patient posting on the site. They are as informed by the whole range of responses which patients have reported to date.

It is doubtful whether this protocol, or any protocol, benefits from limiting discussion to people who are already committed, and must struggle to separate their own prospects for recovery from the relative strengths and weaknesses of the treatment itself.

Still, when the protocol calls for as much time and as many constraints as this one, patients can feel that no one who is not paying their price has any business commenting.

I haven't felt as constrained by that, because I am housebound by pain and weakness, unable to drive because of seizures, and living with all the same constraints that the protocol asks of its patients. If I were dancing around in the sun shooting oysters, poking fun at all the cave-dwellers, it would be a different matter.