If so please give the length of time on the MP and details of recent/past cd57 tests.

I also wonder if folks on the MP should be checking their Immunoglobulin Serum numbers..

(not WB)..

They are easy lab tests, for IgM, IgA, and IgG..

Indicators of general immune response/health

..and maybe Immune Complexes as well?

Mo

What an excellent question. This is one of the markers we've been following throughout my disease process. I should receive my lab work including these markers when I see my doctor next. I'll post them then.

For anyone who is interested in the MP, it has really helped me. Of course, I credit a lot of that improvement to the fact that I had made vast improvements with the help of my LLMD. Although I had relapsed, I was not as ill as many Lyme patients are, so I am guessing that I had a much reduced pathogen load when I first began the MP.

If anyone is interested in the MP, I suggest you familiarize yourself with the papers found here: http://www.marshallprotocol.com/category1/

I would advise anyone who is not thick-skinned to stay away from the discussion forum at the MP website. They have a history of going on the attack whenever anyone asks legitimate, but difficult questions. Patients do NOT find the positive, supportive environment they need in order to be successful with the program.

This is not a new criticism, because another patient reported a similar criticism from an MP doctor, ho now longer feels comfortable referring patients to that website because of the negative feedback from patients, who received poor treatment there. Sick patients have been abused enough by the disease and the system, and they do NOT need to experience any further abuse.

I can't begin to describe the degree to which this saddens me, because this is the single most promising therapy I have ever tried, but I feel the message is going to be buried because the messengers are so callous that their treatment of patients turns them away with a bitter after taste.

I am a patient who is happy with my progress on it, but I am disheartened by the dogmatic tone and their tendency to ``dumb down'' their replies to provocative questions and their ``thought police'' censorship.

Therefore, I no longer post my progress reports at the official MP website because I am tired of being badgered by over-bearing board staff members, who post irrelevant critiques or who often make unkind and insulting comments to other members, especially when that member is posting under their very own personal progress topic.

I don't want to crowd Lymenet with my progress reports, but for anyone who is interested in my progress, please feel free to contact me privately at ``Lonestartick'' at ``yahoo dot com.'' I'll gladly share my experiences with you. My first allegiance is to the Lyme patient community.

I continue to appreciate your balanced feedback on the MP. I have completely stopped reading their website, for the very reasons you mention. I also find it very sad that it is being promoted in that way. I just pray no one gets physically hurt, on top of the emotional wounds that I know happen.

I'm so glad to hear you are continuing to do well! I have been reading some interesting theories, on other websites, that propose why some might do better on it than others. I think it would be wonderful to develop some good screening tools to weed out the ones more likely to have serious problems.

I saw recently that Dr. S is continuing to correlate some of his testing with patients who do well with benicar. One thing he mentioned is that his patients with high VEGF (vascular endothilial growth factor) do not do well on high dose benicar.

It seems like the Cd-57 test might be useful, too, though not everyone's numbers correlate with good health. I haven't had this test done yet, but my doc recently did some general consulting with the originator of this panel, so I hope he will get inspired.

I like to know "stuff", like how my numbers show up.

I have tried to stay balanced with my feedback and cautiously optimistic with my expectations. I feel so blessed to be doing so well on the protocol, but it is too soon to know whether or not this will be it.

As happy as I am with my progress, it has been so disheartening to see the way the staff treats people at that site. I'm so glad to know that medical professionals such as Dr. S are examining these concepts further. The several doctors that I have referred to that board were so put off by the attitudes and arrogance that prevails there. I felt so embarrassed to have shared my enthusiasm with them when I discovered how they & their patients were treated there.

I would love it if you wouldn't mind sharing the links with me to the other websites with the interesting theories to which you were referring. If you care to do so privately, my e-mail is ``Lonestartick'' at yahoo dot com.

My CD-57s have stayed the same from past results. They are still 2% according to CPL. I made the mistake of going to a satellite office, and after returning two days in a row for multiple sticks, they still didn't run the absolute values. The expected range is (4-38). There is little or no change for that value at this point.

We will continue to track them in the future at one of CPL's larger locations where they are more familiar with these tests, in to see if there are changes. I began the MP 7-26-04, so this was approx the 5 month mark when they were measured.

Other MP-related lab work:
In May of 2004 my D results were: 25-D = 34, 1,25-D = 74(H); ACE = 70(H)

December lab results indicate my 25-D has come down to 27. I did not repeat the 1,25 D and ACE testing because of the extra expense which would have conflicted with our wedding plans. We opted to enjoy cake & food instead. We are waiting to repeat all those tests at a later date so I will continue to keep you posted.

I am not at all discouraged that my CD57 NK cells haven't come up into normal range yet because the first six months of the Marshall Protocol is usually just one big, prolonged Herx. It's really much too early to expect to see any positive changes yet by way of lab scores, especially considering the length and severity of my past health history of late-stage, chronic Lyme.

This time frame also matches with the experiences of the rheumatoid patients who were treated by the late Dr. Thomas McPherson Brown or by one of his followers. It always took at least a minimum of six months before their lab scores started to improve and sometimes as long as up to two years for objective proof of improvement by means of lab testing.

Often, the RA patients' lab scores actually got much worse during their first six months of therapy, which was an objective, measurable sign of their Herxheimer reactions and which was to be expected, according to the late Dr. Brown.

That's why I'm neither worried nor discouraged by my still low lab results. It's just not a big deal at this early stage of the game because I can feel major improvements subjectively, with many fewer symptoms overall. Therefore, I sense that I'm making good progress and that I am right on schedule with what should be expected at this point in time.

Because this is an expensive test, I probably won't repeat it any oftener than maybe once every six months, just to see if (or when) my CD 57 NK cells start to improve.

LST

Glad to hear you're still doing well on MP. I am also herxing continuously, pretty much. I'm past the 3 month mark, in Phase 2, and have just started to think that I am maybe, kinda, sorta, seeing some progress. Time will tell.

I want others who may be considering MP to know that while I can appreciate your remarks regarding the general tone at the MP site, that I feel their attitude is somewhat understandable.

People have to realize that MP is still experimental. The moderators are trying to control the experiment. They have no tolerance for people who want to pick and choose only the elements of the protocol that suit their lifestyle.

The last thing they/we need is for people to do MP "except for the sun avoidance part", and then report that MP does not work or worse yet caused them severe herx symptoms.

Dr. Marshasll has stated that people should by all means feel free to make any changes they would like to the protocol. Just don't continue to call it MP, and don't continue to post at the site. Doing so pollutes and ultimately devalues any results that the protocol delivers.

People who want to question and modify MP have taken up residence at one of the Yahoo forums. Last I saw, they had essentially turned it into "mpsucks.com" and were not posting anything of a positive or informative nature.

As you know, MP requires a degree of psychological toughness and a commitment of years. People who are considering MP should be more concerned with being certain they have the right attitude to succeed than they should be about the possibility of asking the wrong questions at mp.com.

Good luck,

dsiebenh

I continue to do the strict MP strictly, without modifications.

I was able to see a strong correlation early on with light exposures and dietary D, so I am very cautious to avoid both. Early on, I made the decision that I did not want to do this halfway, so I have committed myself fully to the process.

I am NOT out to bash the MP or Trevor Marshall. I have seen what you are referring to in the other forum, and I dislike it. I feel the MP is a valuable protocol, and I would like to see it succeed. However, I cannot help but feel that my criticisms of TM/forum are fair and valid.

I'm delighted to hear that you're seeing progress on the protocol. It was after the 3 month mark when I first began to feel that it was working. It's not an easy process, but the difficult periods certainly seem worth getting through once one is on the other side again. You are correct; it does take commitment and a lifestyle change. I have found both to be worthwhile.

We have discussed this privately but I wanted to post my information here for the benefit of others: (the first few numbers are while on high dose abx; I will note where I started the Marshall Protocol)

MEASURING ABSOLUTE CD57
NORMAL RANGE: 60-360 (Clinical Pathology Laboratories)

Date CD57 Comments

6/9/04 87 First time measured
7/8/05 52
7/23/04 111
8/10/04 55
1/10/05 47 Started MP 11/11/04 so this is two month mark

FYI D-metabolite and other testing on 11/1/04:

1,25-D: 68 (15-75)
25-D: 23 (20-57)
CRP: 1.3 (<0.8)
Platelet count: 308 (130-400)
ACE: 33 (9-67)

A little more background:

In Phase 2, begun 2/10 with 1/8 zithromax, second dose of same amount 2/20, next dose planned at 1/4 on 2/2. I am very low energy, disabled from work, but sufficiently functional to care for myself and my dog.

I have been symptomatic to varying degrees for 30 years, only debilitatingly so intermittently for the past 11 years, diagnosed one year ago. Primary symptoms are neuro (fatigue, anxiety, depression, mood swings) and cognitive, stiff upper back/neck. Somep problems with sinus and migraines, but these were greatly alleviated with sinus surgery in 1992.

Have never done IV, only orals beginning 1/04, and the first six months at about half of what Burrascano recommends (Doxy). Began Marshall Protocol 11/11/04.

So far no improvement but experiencing what I believe to be herx in the form of increased fatigue, dizziness, knee pain, general body pain (mild), some numbness in hands and arms when I lean on them, sensitivity to light.

I am not (yet) convinced that the Marshall Protocol will cure me, but believe that it is sufficiently promising for me to give it a six month go. If I have noticed no improvement at the six month mark, I will have to evaluate my options, including continuing with the Marshall Protocol.

I know that is more than was asked for, but hope it is of interest to someone.

Ticked

P.S. My doc said tests turning negative for Lyme on the MP was not necessarily a good sign...for example, could mean that the MP'ers have stopped producing antibodies due to the low doses of antibiotic.

I am hoping my microscopy carried out by Dr W will give me some indication what is going on!