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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Sep 20th, 2005 02:04 |
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What tests do I need to monitor my progress on the MP?
It is expected and encouraged that patients on the MP will be monitored by their primary care provider who will order tests appropriate to assess their general health and ensure their wellbeing.
Baseline tests
The following tests will provide a good baseline if done before the MP is begun:
-complete blood count (CBC)
-comprehensive metabolic panel (CMP)
-25D
-1,25D
-thyroid function
-liver panel
(plus any other labs that your doctor thinks is appropriate for your clinical picture)
Repeat testing
Repeat any tests that are worrisome at appropriate intervals thoughout the MP.
Monitor your progress
At the beginning of phase two, Healthcare Providers should reassess (or assess) the recommended baseline tests.
If cost is a factor and tests have been normal, the only essential test is the level of 25-D (if it was elevated) because it is vital for effective immune system function that this prehormone be at a low therapeutic level of 12ng/ml or less. See How often should I test D levels?
Regular monitoring
Healthcare Providers may want to check or recheck certain inflammatory markers such as triglycerides, creatinine, BUN, CRP and alkaline phosphatase levels. This will provide evidence of immunopathology and efficacy of treatment, and ensure the levels remain acceptable. See What do my lab tests mean?
Radiation exposure
The use of repeat invasive and/or expensive procedures and testing are rarely needed. See Radiation Exposure in this FAQ
Ask your doctor if the results of the proposed imaging will change the treatment plan. Some doctors are accustomed to repeat testing to monitor disease progression and they fail to inform their patients that the tests do nothing to change the course of treatment. Periodic monitoring of inflammatory markers is usually all that is necessary to gauge your progress. See What is the best way to assess lung function?
As treatment continues, the presence of the immune reactions confirms the continuing efficacy of treatment. And finally, symptom resolution, absence of Immune reactions and normal blood work indicate recovery.
You are the most important member of your health care team. Make sure you know what is in your medical records. Always ask for copies of lab reports, xrays reports, clinic notes, etc.
See also:
Phase One Guideline
Which diagnostic tests do I need?
What degree of healing is possible using the Marshall Protocol?
Xrays: scroll down.
Last edited on Mon Mar 31st, 2008 01:07 by Meg Mangin R.N.
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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Jul 28th, 2006 16:35 |
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Chest Xrays are very subjective in interpretation. They are an excellent vehicle for a pulmonologist to use if he/she is trying to persuade you your condition is getting worse, or getting better. Often both interpretations might be made from the same films by different readers.
Best to get the original radiographer's reports (usually available from the lab who took the Xray films), and check to see if it is the same person reporting both, post them here, so the moderators can help you understand what they say, and then try to get that knowledge to line up with your pulmonologist's summary.
Dr Marc Judson, one of the sarcoidosis experts, has written that xrays are not useful for staging, or tracking disease progression, and in this I fully agree with him.
The test which will most likely show an improvement is the DLco gas difusion test. It measures the ability of your lungs to exchange oxygen.
..Trevor..
Clues to what your doctors are thinking about your pulmonary function might be found in their clinic notes which they dictate after each visit. The clinic will provide them if you ask.
You said, "I have never read a radiologist report about my chest xrays as they are taken and evaluated in the pulmonologist's office."
Under the new HIPPA law, you have a right to have a copy of those, and all, test results. You may contact the clinic's health information office and ask them to send you a copy if you want one.
Since you are already on the MP, there is little reason to undergo frequent testing. If you wait until you are further along, your tests will improve and the doctors won't have reason for concern.
What degree of healing is possible using the Marshall Protocol?
Take a look at 36 years of my own chest xrays.
http://sarcinfo.com/xrays
Imaging is an unreliable indicator of the degree of sarcoid inflammation. I am not sure why it is still embraced by the pulmonologist community - maybe because it is the only thing they can understand...
..Trevor..
See also:
Links to information regarding breathing problems
What is the best way to assess lung function?
Last edited on Tue Feb 19th, 2008 05:10 by
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Mon Dec 11th, 2006 01:39 |
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MRI and CT
(filelink)
MRI
Question: "I would really appreciate your thoughts on another MRI. The neurologist asked me to have another MRI so he could check the development (or lack) of a lesion I had. My GP has advised me to proceed with this scan. saying the specialists need to know about my progress on MP as they are treating many people with diseases that could be helped by MP."
Reply: The question to ask, may be "What will the MRI achieve?"
As you have reported symptoms improvements - that is a good sign for the Dr.. Remember that symptoms are expected to get worse before they get better.
If the MRI is to be used as research it is difficult to say what they may deduce from it. If it is worse, indicating Immunopathology, will the Drs understand this and not want to stop or change your treatment?
If it is better, will they expect other or similar tests on yourself or others to also show improvement at this early stage?
My suggestion would be that you agree to undergo the MRI if it is satisfactory to you in every aspect to do so, and to suggest to your Dr/s that you will review and report any improvement or otherwise in symptoms. At this stage you (and your Dr) may wish to rely on your assessment of Immunopathology and symptoms to evaluate your progress.
I believe that a frank evaluation of your progress along these lines will reassure both you and your physician. This is the point where your physician will really need to listen to your assessment of your symptoms because it is possible an improvement to the MRI may not manifest for some time.
Dr Marshall wrote: "Please understand that there is little or no correlation between symptoms such as headaches, and lesions on MRI. Don't fall into the trap of supposing "there must be," because the studies (often) show otherwise.
If you are having an MRI with contrast they will be using an I.V. form of the element gadolinium, that is usually largely eliminated with no problem in most people. There may be a problem in those with kidney problems, and the FDA has issued a black box warning recently about this. It mostly involve MRA's, but could be relevant to MRI's. See:
http://kidneydiseases.about.com/b/a/007094.htm
The gadolinium would be fine for most people on the MP, but everyone should be aware of the black box warning. In those with kidney involvement I would always see if an MRI without contrast would be good enough to visualize what needs to be examined.
Some of the gadolinium can remain in the body even with good kidneys, and it remains an unknown as to all of its possible long term health effects. In some the cost/benefit analysis might be that using the gadolinium is worth it. ~P.B. RN
In patients with impaired renal function, use of iodinated contrast agents can lead to further damage to the kidneys. ~Belinda.
MRI with contrast
The dye used for radiology purposes is not contraindicated on the MP, however there are some considerations I'd recommend.
Be sure your test is absolutely necessary as you will have a fairly high degree of Xray exposure and ask Dr. what he will do with the results.
A few things to consider:
1. Are you allergic to iodine? Be sure to tell radiology if you are.
2. Request the non inonic low osmolar contrast dye if you must have dye for this test. It is much better tolerated and easier on the kidneys; one type goes by the acronym LOCA
3. If you have concern about your kidneys related to recent lab work, do communicate that to your Dr. ~ VEZ
CT scan
Dr Marshall: "Doc doesn't have the patience you have, because he is not experiencing what you are experiencing, and he is therefore puzzled as to what is actually happening. So Doc is trying to evaluate things based on his own perceptions ('models') of the world.
There is a finite risk to every procedure, even CT scans (which usually require an infusion of contrast medium) not to mention the cost, which for CT scans is quite high.
You made exactly the correct choice. Doc really would not be able to interpret what he can see, in any case. Except for obvious things, like lymph-node swelling. But he can often pulpate the key nodes and sense that without the need for any high-tech procedures " <
Here is some information about the 64-slice CT scanner. Beta blockers are usually given in conjunction with this type of scan, and an IV contrast material is used. Evidently the contrast dose is lower but the radiation exposure is higher, compared to the older 16-slice CT scans.
See also What is the best way to assess lung function?
Last edited on Fri Apr 18th, 2008 09:24 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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