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shaky
Member
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Posted: Tue Jun 24th, 2008 05:53 |
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-The date the blood was drawn 21 May 08 (25D) & 5 Jun 08(1,25D)
-Which lab did the tests? Dorevitch
-Was the 1,25-D sample was frozen for shipment? No
-How long have you been avoiding foods with vitamin D in them? 2-4 weeks
-How long have you been avoiding sun/lights? 2-4 weeks
-List all meds, supplements (both prescription and OTC) you have been taking and why. Previously tried Epelim, Lamictal, Inderal, Sandomigran, Zoloft (for the SSRI's linked to migraine prevention) - All these medications were taken daily (at different times) to help prevent migraine attacks; no medications atually helped. Note: my visual disturbances occur daily and progressively getting worse over the past 4 years.
Also taken Valerian Root Herb from Microgenics for 5 years, stopped 16th of May 08 (just in case).
All medications stopped more than a year ago and currently only take Mersyndol as required.
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil? 5 years of Solgar V-75 Multi Vits (contains 400 IU of vit D) daily & 1 year of Microgenics multi vits (contains 200IU of vit D) also daily. Omega 3 fish oil caps most days over the past 3 years.
-Were you taking Benicar when the sample was drawn? NO
-Were you taking an ARB or or an ACE inhibitor when the sample was drawn? NO
1,25D result is 70.8 pg/ml (actual lab result 170 pmol/L)
25D result is 18 ng/ml (actual lab result 45 nmol/L)
Last edited on Tue Jun 24th, 2008 09:44 by shaky
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Severe visual disturbances/photophobia/migraine 125D71 5JUN08 NoIRs covered most times Low Lux home exp work 25D18 21MAY08
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P.Bear R.N.
Research Staff
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Posted: Tue Jun 24th, 2008 22:05 |
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Hi Shaky,
Your 1,25-D is elevated at 70.8pg/ml (the population average is 25-29 pg/ml). It is 4.40 sigma high and based on population studies, 100% of the population would be expected to have a lower number. If sample was really not frozen for transport then results would be even higher.
Your 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.
Your very elevated level of the 1,25-d suggests inflammation in major organs such as heart, liver and lungs.
When should I be concerned about cardiac symptoms?
Your 25-D of 18 ng/ml is still high enough to mute innate immune systen and reflects your reported vitamin D supplementation. With your years of fish liver oil we would have expected your 25-D to be higher, but high levels of 1,25-D inhibit the conversion of vitamin D into 25-D resulting in a lower level of 25-D. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
Your D-tests, diagnosis and symptoms indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
Most supplements and many medications must be avoided on the MP.
Our clinical study is temporarily closed to enrollment. As vacancies occur, we will admit subjects based on an application. To obtain an application forum, please send an email to marshallprotocol2@yahoo.com with 'request MP application' in the subject line.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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shaky
Member
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Posted: Sun Jul 6th, 2008 22:59 |
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Thank you for all the valuable information.
I wish to start the MP as soon as possible but have a big concern with my eyes and have searched for information relating to my condition but only find similar symptoms with people on the MP.
As I already have extreme sensitivity to light & already wear NoIR's everywhere I go, I wonder if I will be able to tolerate any extra sensitivity when starting the MP. My biggest concern is damage to my eyes if my symtoms get worse on the MP.
I do not take any medications and have been avoiding vitamin D for more than a month in preparation for the MP. Do you believe that there is a chance I could go blind or cause any damage to my eyes if I go on the MP. I understand that immunopathology reaction is only temporary but feel that it could get seriously worse due to my current visual problems. I also believe that if I don't go on the MP I could further damage my eyes as it has been four years of visual symptoms getting worse.
Could you shed any light on this big decision I need to make?
Regards,
Paul
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Severe visual disturbances/photophobia/migraine 125D71 5JUN08 NoIRs covered most times Low Lux home exp work 25D18 21MAY08
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P.Bear R.N.
Research Staff
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Posted: Mon Jul 7th, 2008 01:24 |
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Paul, With many eye problems it is important to be followed by an eye doctor. Inflammation of the eyes is a very common symptom of TH1 illness and improves as one progresses on the MP but it is important to limit immunopathology that involves the eyes by not moving too fast and asking for help when needed. I would think that many people can not afford to NOT go on the MP in order to save their vision.
see:
PROTECTING YOUR EYES
Where to purchase NoIR and Bolle 100 sunglasses
Australian Members local availability of NoIRs through our Australian Autoimmunity Foundation, Inc.
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
The effect of light on the brain (Amygdala)
Dr Marshall wrote: "The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the Amygdala in the brain. These neurological symptoms include fatigue, irritability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis." << Adequate eye protection will be particularly important for anyone with eye inflammation.
The light sensitivity is part of the healing process, and will wax and wane throughout the MP .. As you recover you will get to the point where you can't see anything through those dark glasses any more.
Some have the NoIRs 40% for when the 10% are too dark to see, and no glasses are too much light.
Will the immunopathology cause increased eye inflammation? If you are concerned please check with your Opthalmologist. It is important to visit a health-professional when you need advice about your eyes. re dry eyes.. << Adequate eye protection will be particularly important for anyone with eye inflammation.
AVOIDING SUNLIGHT and BRIGHT LIGHTS
How and why to protect skin and eyes while on the MP
EYE INFLAMMATION and Th1 diseases << Adequate eye protection will be particularly important for anyone with eye inflammation.
Eye exams
Uveitis
Renin-Angiotensin System and the Eye
Members discuss their eye problems
Studies and scientific papers Eyes
Relieving eye symptoms
Cataracts
Glaucoma
Optical phenomena
Eye medications
Eye exams
Dry Eyes and eye drops
Improved vision with the MP
Contact Lenses
Eye inflammation and CFS Th1 diseases
Macular Degeneration
Avoiding natural light exposure to skin is essential if you have any symptoms of eye inflammation
Detached retina
Vasculitis in the eyes
If you have more questions please reply here also.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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shaky
Member
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Posted: Wed Jul 9th, 2008 05:54 |
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Thank you for all that advice & links.
I wish to start the MP next month (or two depending on the doctor's recommendation after my initial consultation middle of August). I was wondering if I should begin Benicar now (without minocycline) while I wait to see this doctor to help protect my eyes from any damage. Or, can you recommend any other option to protect my eyes from damage while I wait to see my new doctor? Note: I am already wearing NoIR's & avoiding vitamin D food & sunlight, etc.
You advice I should limit immunopathology that involves the eyes by not moving too fast, is taken Benicar without minocycline a safe approach (for a month or two?
I also tried to registered on the MP site and filled in most all the questions until I got to my doctor details. I have not yet had my initial consultation and not sure if I can supply this doctors details. I cannot even confirm if he is registered with the MP as I've yet to meet him. Any suggestions on what I can submitt here (or leave blank)?
Thanks,
Paul
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Severe visual disturbances/photophobia/migraine 125D71 5JUN08 NoIRs covered most times Low Lux home exp work 25D18 21MAY08
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P.Bear R.N.
Research Staff
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Posted: Wed Jul 9th, 2008 06:12 |
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Shaky, I can not really legally recommend any course of action until you are under the care of a physician or physicians to help manage your situation, and are accepted into the study. Benicar alone can sometimes cause immunopathology in addition to having protective effects, so having physicians in place is essential.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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shaky
Member
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Posted: Fri Sep 26th, 2008 01:06 |
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Hi,
I have been seeing a CFS doctor (currently treating patients on the MP) and after running further test and onto the second visit has suggested that I try Dr. Kenny De Meirleir's B12 Protocol (also known as the Pall Protocol) before commencing the MP. This protocol is about eliminating the activation of the Nitric oxide cycle, producing effects within the CNS, adrenal glands, muscles and results in vasodilatation in regions of the body.
My Doctor believes my sensitivity to light will not be tolerable while on the MP as I am already extremely sensitive to light & pain in and around the eyes.
I have been slowly increasing my 1,000mcg B12 injections to three times a week (that'll eventually need to be daily) and have been advised to start Folic Acid supplements but haven't as yet I am concerned as the MP site is againts Folic Acid.
Now on to my third visit, I will also need to commence Magnesium Glycinate and Rivotril (clonazepam) medication where these will help further remove the Nitric Acid (NO) from my body.
My doctor supports both the Pall and MP protocol's so I can get a little confused when asked to do something that contradict's the other.
I have unabale to find information on the MP site relating to this protocol that has been around for a long time and so I curious to know if there are any MP patients that have tried the Pall Protocol before going on the MP.
I am a concerned that I may be causing further damge to my eyes by delaying the MP while trying the B12 protocol and would just like some opinion on whether or not I may wasting my time.
Thanks
Paul
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Severe visual disturbances/photophobia/migraine 125D71 5JUN08 NoIRs covered most times Low Lux home exp work 25D18 21MAY08
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
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Offline
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Posted: Fri Sep 26th, 2008 03:59 |
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Look, if you accept the disease model that underlies the Marshall Protocol, vitamin supplements are not going to cure you. They won't kill bacteria, and some like folic acid will actually help them multiply.
Your NO metabolism may well be a bit out of whack, but the way to fix it is to remove the cause (CWD bacteria), not just treat the symptom.
Same goes for your light sensitivity, if you don't treat the cause it will just get worse over time.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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shaky
Member
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Posted: Fri Sep 26th, 2008 04:32 |
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I only asked if this is Pall Protocol is used by anyone on the MP as I cannot find any history of it.
Also, I never said that vitamins alone will fix this problem as my doc has also prescribed medication (clonazepam) as already mentioned in previous post.
I have been waiting a long time to see the only CFS doctor (that treats both Pall & MP patients) here. I cannot make the decision for my doctor as he beleives that I will not be able to tolerate the increased sensitivity to light as I am already unable to cope with any light. I am just trying to get anwers before it's too late; I don't want to find out the hard way.
Is what you are saying is that the Pall protocol is a band-aid fix and not a cure?
I have read a fair bit about the mp and ready to get started (as I've been desperately waiting all this time). I know very little about the Pall protocol and if it is a waste of time and then it would be nice to know, that's all....
Last edited on Fri Sep 26th, 2008 04:45 by shaky
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Severe visual disturbances/photophobia/migraine 125D71 5JUN08 NoIRs covered most times Low Lux home exp work 25D18 21MAY08
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
| Status: |
Offline
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Posted: Fri Sep 26th, 2008 05:31 |
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shaky wrote:
I never said that vitamins alone will fix this problem as my doc has also prescribed medication (clonazepam) as already mentioned in previous post.
I don't think that kills bacteria either, does it?
Is what you are saying is that the Pall protocol is a band-aid fix and not a cure?
I hadn't heard of the Pall protocol before now, and I'm not qualified to give medical advice, but that's what it looks like to me. I think at best you'll get some palliation of symptoms without fixing their cause, and at worst it could weaken your immune system further.Last edited on Fri Sep 26th, 2008 05:32 by JoshR
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Julia
Advocate (on leave)
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Posted: Fri Sep 26th, 2008 11:01 |
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Paul,
Please go to the main site and put 'pall' into the search box. Of the three hits you get, the middle one is the one you want.
Also see Safety warning
Do I need to detox
Dr Marshall said to a member who asked whether she should get B12 injections for excess nitric oxide:
Most of the body's healing processes work better if they are left alone.
The concept that we should intervene in these diseases with supplements or therapies has not worked, and I deprecate it.
I agree with Josh - you need the MP asap.
PROTECTING YOUR EYES
Photosensitivity
Light sensitivity
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Always consult a physician
Essential Info; FAQ; Julia's story
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