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celeste
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Posted: Sun Jan 6th, 2008 14:26 |
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I am hopful Dr. Marshall can offer some insight into this disease as it appears I picked it up in Australia 1.5 yrs. ago his home country! I just was diagnosed in Nov. but didn't begin meds (doxy) unit 2.5 weeks ago. As this is a rare disease here in the state it took a trip to Belgium to get diagnosed from a CFS specialist. Has been cofirmed by Quest here in the states. My doctor in Belgium wants me on a macroglide for 6 weeks followed by lymecyclin whcih is what I probably will begin doing this week.
I have located a dr. in FL using MP but should I first complete the Q-fever protocol and then begin MP?
Q fever IGG phase 1 SCR ( Positive), reference neg
Q fever IGG phase I titer: 1:64 H titer ref < 1:16
>IGG Phase II screen Positive
>IGG Phase II Titer : 1:64 ref< 1:16
>IGM Phase I SCR Positive
>IGM Phase I titer: 1:16, ref< 1:16
>
>IGM Phase II SCRN, NEG
Thanks for your input.
Celeste,
1,25D 45pg/ml, 25D 49, D3 49.
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Dr Trevor Marshall
Research Team
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Posted: Sun Jan 6th, 2008 16:14 |
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Celeste,
Most patients who are symptomatic with CFS already have their immune systems too heavily compromised by the Th1 bacteria for antibiotics to work effectively.
What we have done that is unique, is to understand that the VDR Nuclear Receptor transcribes most of the body's antimicrobial peptides, the immune system's defense against intracellular, persistent, bacteria, and that the VDR is shut down by the pathogens. In its early stages, the MP is focused on getting the VDR working again. Without those steps the antibiotics cannot do their job properly.
It is almost certain that the bacteria found by Quest are not causing your illness, but are present because the weakened immune system cannot kill them. They are co-infections, not the primary infection.
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celeste
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Posted: Sun Jan 6th, 2008 17:16 |
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Hi Dr. Marshall:
My initial thoughts were that the current antibiotics would help lower my bacterial load (Q-fever infection) and hopefully reduce the herx. affect from MP. Is this a poor assumption?
Thanks again.
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Dr Trevor Marshall
Research Team
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Posted: Sun Jan 6th, 2008 17:28 |
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Celeste,
It is hard to say. Some of the patients who started treating their RA with the "RoadBack' protocol achieved some form of remission over the first 9 months, or so, but then they were unable to progress past that point. Others were too ill to gain any real benefit from the antibiotics.
We find that most folk are pretty ill by the time they get a CFS diagnosis. I would doubt that you would get much benefit from antibiotics alone, and I will guarantee than any remission is short-lived.
Have you seen any data on the effectiveness of the therapy you are being offered? Is there a web site where I can go and read the logs of people who are using that therapy? Can I ask the lead investigator questions about the science underpinning his/her recommendations?
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celeste
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Posted: Sun Jan 6th, 2008 18:47 |
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Dr. Marshall:
Perhaps I am being a little vague.. First I have not been officially diagnosed with CFS , I went to Belgium to see the CFS specialist with my sister. She has had it for over 17 years and now most likely has neurosarcoid and the Belgium doctor actually said to look into MP. (I have hasimoto). We have 3rd sister with RA, needs double hip implants but she isn't ready to join us on MP.
You are correct that the outcome of patients that have progressed to chronic q-fever is poor and this is why I have done so much research with the CDC proctocol and MP. The belgium doctor has treated patients with the macoglide/limecyclin (non-standard protocol) with success but again, will it come back? (He is published but not on q-fever)
Ideally I would like to have my infectious disease doctor become my MP handler..Unfortunately I don't think I can begin MP until Feb. given work and family matters needing to be aligned so I will need to stay on antibiotics until then.
My sisters and I have all supplemented omega's our entire lives (beginning with our mother giving us cod-liver oil and many vitamins daily). Learning this could actually be detrimental to our health has been quite a shock.
Thanks for being so responsive on a Sunday afternoon 
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Dr Trevor Marshall
Research Team
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Posted: Sun Jan 6th, 2008 21:48 |
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Sunday? Is it Sunday? 
Celeste, I will send you a preprint of our new paper which will come out later this month. Although it might seem pretty complex at first glance, it explains in detail the mechanism that the pathogens use to evade the immune system, and it explains the extent of the harm being done to the population by Cod Liver Oil, and all the other forms of Vitamin D. In particular, it explains how the VDR is critical to the operation of the immune system. The references it cites should also be a help in your research.
I have no experience with lymecycline, and you didn't name which macrolide was being suggested. We have found that Minocycline works well against the primary pathogens, as does Demeclocycline. But I know that in the absence of the VDR agonist, Olmesartan, the antibiotics are ineffective, in the long run, as they need a functional innate immune system to beat the intraphagocytic pathogens.
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celeste
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Posted: Sun Jan 6th, 2008 22:19 |
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Thanks Dr. Marshall:
Got the article and will read it tonight. The macroglide is Azithromycin 500mg/day but there are some others we were going to consider as well. I am herxing from the Doxy (100mg/2X), blood pressure is up 128/76 (usually low) but my polar monitor has my resting pulse is 41-55.
Thanks again, I feel very secure knowing you stay so involved.
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celeste
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Posted: Wed Jan 23rd, 2008 03:19 |
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Hi Dr. Marshall:
I believe you have been speaking with my sister Mona and she is starting MP soon...
I have my Benicar script and want to start tomorrow but have one question...As the Q-fever can infect the heart and I was experiencing a lot of erratic heart beats and pressure should I have an echo. done before starting the benicar or is it OK to go in next week after beginning Benicar?
Thanks!
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Julia
Advocate (on leave)
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Posted: Wed Jan 23rd, 2008 09:32 |
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Hi Celeste,
You might find this link helpful: When should I be concerned about cardiac symptoms?
Please note this warning (taken from Why does exposure to natural light increase symptoms?):
Sunlight exposure increases the level of 1,25-D and might raise it high enough to cause a flare in cardiac inflammation and cardiac symptoms. Diligent avoidance of sunlight is particularly important for the Th1 patient with cardiac symptoms to avoid a sudden severe cardiac event.
Some other links:
READ THIS INFO before beginning Benicar (scroll down to 'Cardiac Inflammation' at the end)
Before You Begin the Marshall Protocol (general)
Are you thoroughly familiar with Phase 1? It helps to have it printed out (one for you, one for doc) to refer to.
MARSHALL PROTOCOL FAQs (Required Reading)
Best wishes for your MP journey!
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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celeste
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Posted: Thu Jan 24th, 2008 17:49 |
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Hi Julia:
Thanks, say the cardio. today and have an echo set for monday...
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