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Cynthia Schnitz
Member
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Posted: Sat Aug 2nd, 2008 06:36 |
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Preparing for the MP in a month or two.
Will the benicar, which has been referred to as an inflammation inhibitor, work as a replacement for the omega 3 oil I now use to reduce inflammation in the pads between the vertebra in my back which makes normal life possible? And will perilla oil (a vegetable non-flax source of Omega 3) be OK to use if the going gets rough with swelling in the pads, or will additional benicar be used in the same way as additional perilla oil is used now when the normal dose is not enough?
Should I take steps to confirm the type II diabetes for the record before I start the MP. It would require going from a very low carbohydrate life style to a normal carbohydrate regimen for 2 to 4 weeks (info from Atkins' book) to have enough sugar in my bloodstream to satisfy my doctor's insistence on a positive test result to call anything diabetes (symptoms don't count these days). Failure to get a positive test happened because, after recognizing the symptoms, I followed a low carbohydrate regimen for 4 or 5 months prior to being able to get to my doctor's office due to the constraints of a move from CA to AZ. If by 4 weeks no sugar shows in the blood, I will assume that the loss of 30 pounds was enough to eliminate the diabetes.
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Julia
Advocate (on leave)
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Posted: Sat Aug 2nd, 2008 11:40 |
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Hi Cynthia,
Benicar profoundly alters your entire hormonal system, so it isn't appropriate to make precise comparisons between it and other drugs/supplements. Increasing Benicar is the first line of attack when pain is intolerable, but your doctor may wish to give you painkillers to use as needed; please see PAIN CONTROL.
Supplements such as perilla oil are contraindicated on the MP because their interaction with the MP meds has not been fully studied. Please see Why do I have to stop my alternative treatment and avoid most supplements?
There is no need to confirm diabetes. It sounds as if you've succeeded in getting it under control - congratulations! MP members with diabetes types 1 and 2 have found their condition measurably improving as they progress through the MP.
Which diagnostic tests do I need?
Is the MP an Applicable Treatment for my Disease?
Before You Begin the Marshall Protocol
MP Memberships Temporarily Closed
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Cynthia Schnitz
Member
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Posted: Sat Aug 2nd, 2008 17:19 |
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| Thank you for the reply. Pain amelioration is not really needed with the arthritis. The problem with the inflammation is that it produces such swelling in the pads that it feels like my back is going to explode, and results in the inability to sleep until the swelling goes down at about 3 o'clock in the morning after many hours of turning over in bed like a rotisserie. The swelling of the pads caused stretching of the connective tissue allowing vertebrae to pop out of place, and resulted in one mildly herniated disc. All of these problems have been eliminated now for several years with the anti-inflammatory effects of omega 3s. But for the duration of the MP, and for the sake of its success, all these can be tolerated, and pain killers would be of little use anyway. Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Sat Aug 2nd, 2008 20:16 |
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Cynthia,
If you do not already have one or more foam toppers on your mattress, you might want to get some. I really had a lot of pain initially and really needed plenty of pillows and a couple of layers of that new memory foam stuff to relieve all pressure for long periods of time I spent horizontal.
But that isn't an MP requirement, just how I managed to avoid more pain than necessary on hips that felt like they were being drilled and ripped and broken all without end (of course, it did end and went away eventually, but whoa, they hurt like crazy if I was on an uncomfortable surface).
Best to you Cynthia--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Cynthia Schnitz
Member
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Posted: Sat Aug 2nd, 2008 20:23 |
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| New bed is in the works and most likely one with the latest foam technology. Will insist on getting it in place before starting the MP. Thanks for the heads up on that one. Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Cynthia Schnitz
Member
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Posted: Sun Aug 10th, 2008 18:51 |
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For D testing, I came across a contradiction:
http://www.marshallprotocol.com/forum2/366.html "The sample should be allowed to settle and clot at room temperature for at least 30 minutes (but no more than two hours) and then centrifuged."
http://www.carouselcharts.com/MP_Th1_D.pdf "Blood must be drawn, clotted at room temperature for no more than 30 minutes before centrifuge, and the resilting..."
Which is it, 30 min to 2 hrs, or no more than 30 minutes?
On a related topic:
When I go to the Quest Diagnostics 'Lab Finder' for any Arizona city, I get a lot of Sonora Quest Labs and a few others, but no 'Quest' lab. Can I assume that the Sonora Quest labs are as reliable as 'Quest', may be even that they are just the name for Quest in Arizona? Any idea what '(preferred 3rd party)' means?
Would it be preferable to find out which of the Sonora Quest labs actually do the testing, and have the test performed at that location?
Last edited on Sun Aug 10th, 2008 18:59 by Cynthia Schnitz
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Sun Aug 10th, 2008 23:11 |
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Cynthia,
Thank you for pointing out that to new folks. You are correct that they are not saying the same thing. For best results, match this info set to Quest diagnostic instructions:
http://www.marshallprotocol.com/forum2/366.html "The sample should be allowed to settle and clot at room temperature for at least 30 minutes (but no more than two hours) and then centrifuged."
No matter what lab draws the sample (for example, my doctor's office had a drawing lab on site that was not affiliated with any one testing lab), preparation and sending it to Quest according to Quest diagnostics guidelines for 1,25D is a must, or Quest will reject the sample.
If you look up the serum 1,25-dihydroxyvitamin D test at the Quest website, you can read Quest's instructions to reject samples that are received thawed or refrigerated and not frozen.
Best to you Cynthia--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Cynthia Schnitz
Member
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Posted: Mon Aug 11th, 2008 00:44 |
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What I found on the Quest web site was a bit generic:'clotting, 30 to 60 minutes', and specifically for 1,25D, red top glass (no additive) vial, 3 hour room temp stability. I will discuss this info, particularly the prospects of shipping to the Quest lab in San Juan Capistrano, CA, with the lab before having the blood drawn.
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
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Posted: Mon Aug 11th, 2008 02:14 |
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Cynthia,
Those who have sent to Quest follow Quest's guidelines. That's always the best source to check for the fussy 1,25D assay.
Instructions and where to post for nurse moderator response when you get the your results back:
Help with Understanding D-metabolite tests
Moderators will help you understand the values returned from lab tests in this forum
Best to you Cynthia--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Cynthia Schnitz
Member
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Posted: Wed Aug 13th, 2008 05:20 |
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OK, D test samples should be delivered to Quest today. Something others may be interested in. Called the main office/lab of THE lab in our area to check on things and discovered that only the main lab had a centrifuge. None of the other five satellite labs in the tri-city area had a centrifuge. Don't know what would have happened to the timing of the 1,25 D blood sample if I had showed up at one of these satellite labs with my doctors order, but I'm guessing it would not be good.
Went in for the test in late afternoon when they were less busy and when they would have to process my blood on time just to go home. Blood drawn at 3:30, then came back at 4:30 and made a pest of my self asking questions. Head person came out to assure me that the sample was processed already as needed, and that they often have doctors requesting samples be sent to 'Quest Nichols', and not to worry, both samples would go to that lab. Felt guilty about taking up there time, but as some of their staff was just standing around with nothing to do at that late hour, I guess I was more embarrassed to be a pest than anything.
Now, some low grade questions. Since fungicides are 'not' OK, and xylitol, I have found, can replace nystatin to prevent intestinal candida from acting up, is it possible that xylitol should be avoided too, or maybe this is something Dr. Marshall should look into to see if it has immuno suppressant effects too? If this has already been determined not to be a problem, I will use it in place of nystatin where I expect problems, like when eating cheese. Cheese and low carb beer are the only foods that cause a problem since I went to a very low carbohydrate regimen.
In trying to prepare myself with some arguments to use with my doctor, I did a search on 'Phase 2 Study' to get some data, and kept getting Phase 2 of the protocol. Too bad for the confusion. But so far I have, and correct me if I'm wrong, 'over 300 doctors involved in the study and quite a few hundred patients, with FDA monitoring'. Is Phase 2 a type of study, and was there a phase 1 study?
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Julia
Advocate (on leave)
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Posted: Wed Aug 13th, 2008 11:59 |
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Cynthia,
The sugar alcohol xylitol, used mainly as a sugar substitute, has a lot of claims made for it, including 'feeding the good bacteria', and improving calcium absorption in osteoporosis by some unknown means (which might, at a guess, mean it interferes with vitamin D metabolism in some way). I would think that makes it suspect, though as far as I know, Dr M hasn't studied it.
Incidentally, I'm no beer expert, but I've read that 'low carb' beer still has about 2/3 to 3/4 the carb content of ordinary beer, so you're not cutting carbs that much by switching to it.
Antibiotics, Probiotics and the Immune System - 'good bacteria'
Where can I find statistics about the Marshall Protocol? should answer your questions about the MP trial.
Julia 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Wed Aug 13th, 2008 18:32 |
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Cynthia,
"Phases" can be confusing when looking at terminology. Basically it is a compartment naming convention of sorts.
When reading about NIH studies, they have a phase 1-4 sequential compartmentalization. This should not be confused with phases of the MP.
Best to you Cynthia--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Cynthia Schnitz
Member
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Posted: Thu Aug 21st, 2008 13:18 |
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Has anyone ever had the brief sensation of electricity running thru their body as a symptom of TH1 disease? After extensive reading on this site, no one appears to have mentioned it.
At one point, this was the regular symptom an hour or two after consuming any source of calcium. This appeared to finally ceased happening with calcium until one day, after milk was added back into my diet, I took a single large dose of vitamin D, producing a large such sensation. Researching this on the internet is what brought me to the Marshall Protocol.
Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Julia
Advocate (on leave)
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Posted: Thu Aug 21st, 2008 16:27 |
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Cynthia,
I haven't noticed anyone mentioning the feeling going through their whole body, but it's common to get tinglings of various kinds in parts of it, such as an arm, a hand or a foot. The technical name is neuropathy - nerve disease. It goes away on the MP, but it can be one of the slowest symptoms to resolve. I don't know why it should be linked to calcium particularly.
To answer the question you were asking me about waivers: some doctors already have a waiver set up for you to sign, agreed by their insurance. If not, write one as a suggestion and show it doc.
It should say that you accept full responsibility for the treatment you wish to pursue, absolve them of responsibility, and undertake not to sue them if anything should go wrong. Perhaps someone who has done this will be able to add something. I offered to sign one for my doc, but he must have trusted me, as he never made me do it!
See HOW TO OBTAIN INSURANCE BENEFIT FOR FULL DOSE OF BENICAR for ideas - see 'Consent to treatment' form (scroll down about 1/4 page).
Julia 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Cynthia Schnitz
Member
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Posted: Thu Aug 21st, 2008 19:46 |
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I doubt that the two symptoms are related. The effect only lasts for a second or two, and I could imagine two electrodes on either side of my chest as the current passes thru. Maybe someone will read this who has had the sensation.
Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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freddie ash
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Posted: Thu Aug 21st, 2008 20:55 |
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HI CYNTHIA
This is Fred in WV. On the electric shock going thru the whole body, when I was sent to Granview Hospital in Dayton, OH to see what was wrong with me, I was having the same thing. I was sent there to see a cardiologist becasue I had something wrong with my heart and lungs. I was to go to the ER and the cardiologist would come there to see me and addmitt me. He came in and I was hooked to the heart monitor and when I could feel the shock go thru my body the EKG line on the monitor would go down and it was suppose to go up. The cardiologist was listening to my heart and he could hear that. He ask if I could feel it, and I said yes. He wanted to know what it felt like. I said it felt like an electric shock going thru my whole body when it did that. I no longer have that problem. I am just a person in Phase 3 of the Marshall Protocol for over 3 years. It has been a great improvement to my life and I am a 68(69 on Sept 1) year old male. I am having a great time telling every one how much the Marshall Protocol has helped me. I tell every one that will listen. At my MP doctor's office last time he told me he had some patients asking him about the MP and he said they told him they had heard it from me. The Marshall Protocol is the only treatment out there that will help you with any of these TH1 diseases.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Cynthia Schnitz
Member
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Posted: Fri Aug 22nd, 2008 00:40 |
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Sounds like yours was a bit stronger than mine, except for the time I took the large dose of Vitamin D. Mine usually seems limited to the upper half of my torso, but it is so poorly defined, it may just be a matter of intensity. No serious heart problems here, according to stress echo-grams.
I just wanted to say to those that may be following my thread, that I am in really great shape compared to many of the people reporting their problems here. I have been able, along the way, to find really effective work-arounds for my problems, those that let me live my life comfortably, but clearly not in a manner that stops slow worsening of the bugs. I am one of those that everyone says should fix their problems early, before serious illness strikes.
Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Cynthia Schnitz
Member
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Posted: Mon Sep 1st, 2008 04:36 |
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I think I will take the time to bring in some information from other sites/posts on myself, just to keep it all in one place.
From my post at the "Posting D-metabolites test results" site:
Symptoms: Arthritis(spondylitis?), Calcium anomaly(recently noted Vit-D related), Type II diabetes(unconfirmed), disabled sense of smell, Candidiasis, toenail fungus, sitting produces chilled state, occasional & inexplicable(till now) feeling of intoxication
Test results just received: 25-D 43 ng/ml 1,25-D 47 pg/ml Quest lab, believe was properly handled, blood drawn 8-11-08
Test result 2 years ago: 25-D 34 ng/ml
Low carbohydrate regimen last 6 years
Meds: Bio-identical hormones (Progesterone - 200 mg tpd, Tri-Estrogen - 1.25 mg [80,10,10] tpd), Nystatin for intestinal Candida since 1993, mostly unused since low carb diet, but used a few times around time of test. Undecylenic acid topically for toe-nail fungus last year or two. No other meds.
Supplements: for many years, full range of supplements (not one a day), including, Vit.-D (300 to 1000 IU, averaging around 400-500 IU), DMAE (150 mg), DHEA (25 mg), Soy extract (185 mg), Folic Acid (200 to 1200 mcg, averaged ~400 mcg), AND
Last 11 years, 6 capsules (1100 mg ea) Omega 3 fish oil, reduced to 4 caps last few years (low carb diet reducing need?), and 6 tabs Glucosasmine/Chrondroitin (500/400 mg), reduced to 4 pd last few years.
6 weeks before tests: Vit-D removed from diet, with improving efficacy over period, dropped all supplements except: vegan glucosamine, 3 caps (750 mg), Perilla Oil. 4 caps, reduced to 2 over period (1000 mg, vegetable source of Omega 3), moderate sun avoidance.
2 weeks before tests: Dropped glucosamine and progesterone, with perilla Oil at 1 cap pd and as needed. Toenail med dropped.
I think something should be said about the history of my arthritis. No one ever said what kind of arthritis it is. I was diagnosed in 1991 by changes seen on an xray. It is not osteoarthritis, as I have always had excellent bone density tests. It appears to be limited to swelling in the pads of my back and definitely has an immune connections, as I once tried to be smart, and gathered up every supplement known to have anything to do with the immune system to try to correct the problem. Taking these caused a disaster. It turned up the fires of hell and a year later, around the time I discovered Omega 3 oils, I had a mildly herniated disk, and tissues so stretched that a vertebrae kept popping out of place, and plenty of misery. Since the use of Omega 3 oils to keep the inflammation/swelling down, all of the problems are gone, but my back always tells me when I am not taking enough Omega 3 oil.
Now that I have been off vitamin D for 2 months, I am down to an occasional perilla oil cap, and I am about where I was before that big mistake. So, is it possible that the low carb diet has killed off all the sugar dependent cwd bacteria, easing that particular problem? Big question, since my 25-D is so high, and my symptoms are quite manageable right now, would it be best to wait on the full protocol, and just work on getting the 25-D down, with a 25-D test every 2 or 3 months, until my 25-D gets close to 20 ng/ml?
I am also a little concerned that other cwd bacteria may now be filling the void. I have had some indication that my teeth are not as sturdy as before, with some chipping and etching in the last couple of years. I will have another bone density test very soon, and if I am now starting to show bone density loss, I guess I will come back for suggestions for more immediate help.
Just a note about the Calcium anomaly. It is a very brief sensation of electricity running thru my body (noted above). At one point, this was the regular symptom two or three hours after consuming any source of calcium. This appeared to finally ceased happening with calcium until one day, after milk was added back into my diet, I took a single large dose of vitamin D, producing a large such sensation. I think I will not be able to get all the way up to the RDA of calcium for awhile until this passes, as it comes back with the RDA dose of calcium, but is not really noticeable with about half of that.
An answer was received, and yes these numbers are high. Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Cynthia Schnitz
Member
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Posted: Mon Sep 1st, 2008 04:58 |
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I have been off of Vit-D for 2 months, well, with growing compliance, and I have noted a change in my sense of smell since. Instead of an infinitely short poof of smell registering about once a month, always too short to identify the source, I am having brief duration episodes of smell functionality, some days, multiple times per day, sometimes, a day or 2 with nothing.
Also, I have not had any Candida toxin effects lately from consuming yellow cheese, and I have tried to provoke it with no success. Not sure if the xylitol had any help in this, but I never got such a complete change with nystatin. It was only a month or less ago that I was having a considerable reaction to cheese, feeling bad and needing to zonk. Even beer is not making me sleepy now. Most interesting.
I my previous post, I noted that I stopped using a toenail liquid that keeps the fungus from producing spores and making my toe nails black. One big toe's nail is starting to turn black. I will let this be my canary in the mine shaft. If the fungus goes away on its own, I will know there has been a major change in my immune system. Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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Cynthia Schnitz
Member
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Posted: Mon Sep 1st, 2008 05:59 |
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So I was thinking of waiting until my next 25-D test in 2 months to see if the level was coming down, and plan to start the MP when I can project the level getting near the 20 ng/ml level.
BUT, I lost a lot of sleep last night when I was looking for a forum of progress reports to peruse, and came across the only place I could find anything like that, the Phase I Alumni Forum, and Aussie Barb's progress report starting in Aug of 2004. Following the report, and skipping a few pages at a time to see how she was progressing, I got totally engrossed in her report. It was worse than a book you just can't put down. I had to see her finally get thru that black whole she was in and out the other side. I have to tell you, when she had problems, then came out of the hospital and started up the MP meds again, I was shocked. If anyone deserved a real break from the MP, she was it. But then I realized that if anyone knew what she was doing, Barbara was it, and I though what an INCREDIBLE spunky lady she is. I was getting a little worried about the fact that she was still working hard at the MP, and I was about to run out of pages. Then I realized that it was ending because it was coming up to the present date, and this was not just an archived report.
This gave me such a clear picture of how serious this whole protocol procedure is, and how there is the possibility of grabbing a tiger by the tail. If I start the procedure and the immune system starts working on its own, I may have herxing, whether I want it or not. This made me realize that I may not want to wait until my 25-D level comes down to start, as I assume I will have better control of herxing before my level reaches the magic 20 ng/ml. And I really want to be sure of my supply of benicar before starting.
Barbara's comments about chills, and those of others on the MP, reminds me that when I first went to a doctor about the need for estrogen for hot flashes, my biggest complaint was not the hot flashes, but the cold chills. Hot flashes were just so so bad. He fixed me up with progesterone for the chills, and no problem after that. I have dropped the progesterone now in preparation for the MP, and have yet to have any of the chills so far. Looks like the hormones are doing strange things while the bugs are being killed on the MP. Cynthia
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Phase I 10-27-08, Calcium anomaly causes sensation of electricity thru chest, Spondylitis, TypeII diabetes(unconfirmed), returning sense of smell, sitting produces chilled state, finger ulcers
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