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Meg Mangin R.N.
Research Team
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Posted: Sat Jan 5th, 2008 04:40 |
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What is the best way to assess lung function?
Pulmonary involvement
"Many in the cohort have extensive pulmonary fibrosis. Some are recovering transplant candidates. You might like to look at my own Xrays, online at http://sarcinfo.com/xrays
The lack of lung function is reversed by several factors as the bacterial load is removed by the MP. First, FEV1 improves, mine by 25%, as the muscle tone returns. Second, and more important, DLco returns to normal as the inflammation leaves the lung tissue.
It is thought that pulmonary fibrosis is somehow irreversible, but we find no evidence of that. As they heal, everybody on the MP has regained lung deficits, and discarded any supplementary oxygen. You won't find them running marathons, but you will find fully functional members of the community. 
Bacterial load accumulates with age, but the only safety issues are those related to the normal management of immunopathology, which must be watched with any patient." ..Trevor..
Lung inflammation may be misdiagnosed as a "respiratory infection" It has to be differentiated from "pneumonia"
http://tinyurl.com/43hqr
and lots of other conditions.
http://tinyurl.com/58rjz
Measure progress with pulmonary function, not imaging
Do not be concerned about "cloudy" chest xrays. That is to be expected with long-term pulmonary sarcoidosis. It is the pulmonary function that counts and that will surely improve. Dr. Marshall just got a clean bill of health from his PCP and his chest xrays are still cloudy. You can see them are online at http://sarcinfo.com/xrays
Trevor said, "You can see that I was stage 4 by 1978, and given 18 months to live. Luckily I figured out Vit D about 1986 and slowed the progression. However, you can see that the fibrosis (scarring) on my xrays (which I urge you to compare with your own) is stage 4++. The fibrosis in my lungs remains, which is no surprise to anybody. But they feel 'normal' and are functioning perfectly (albeit, at a reduced TLC).
"You will also note that my heart has now shrunk back to a normal size... (it was enlarged through all those years of pulmonary hypertension). Now take a look at the conference DVDs and you can assess how much all that scarring slows me down these days - virtually not at all...
"Those patients who are on supplementary oxygen quickly find their need for oxygen dropping after they start on the protocol. On average, it takes about 6-12 months to wean from 24/7 oxygen. Full recovery will take a lot longer, but the lungs recover basic functioning fairly quickly. There seems to be no such thing as "irreversible lung damage.
"While it is true that fibrotic changes do not improve during the (relatively) short time period of recovery, the lungs return to functionality despite the fibrotic collagen. For example, the gas transfer factor rises towards unity (from the 50% or so typical in stage IV sarcoidosis) and FEV1 usually also improves 20% (or so) as the patients start to regain muscle tone.
"Pulmonary hypertension also disappears, as the whole cardiovascular system gradually returns to normal (eg: enlarged hearts shrink back towards 'normal', and ejection fractions return back to within normal range)." ..Trevor.
Pulmonary function tests
DLco gas transfer factor test
"The best test to show inflammation in pulmonary interstitial tissue is the DLco gas transfer factor test. The DLco is important because it recovers back to 'normal' during the MP, allowing sarcoidosis patients who were needing 24/7 oxygen to be able to discard the oxygen and still function reasonably well. Even if the fibrotic tissue remains, the sarcies recover lung capabilities based on FEV1 (muscle tone) and DLco (gas transfer) improvements.
It my opinion that the biggest single factor in lung effectiveness is the ability of the lungs to transfer gases to and from the blood. This is measured by the DLco test. This capability is significantly reduced during active inflammation, and of course by immunopathology.
The DLCO (diffusing lung capacity) test is usually given at the same time that other pulmonary function tests are given. It is not a self test - it's usually administered by a respiratory therapist in a facility such as a hospital, by a doctor's order.
You inhale a single breath of a known quantity of carbon monoxide, then hold your breath, then exhale. This is all done with special equipment so the exhaled breath can be analyzed to determine the amount of carbon monoxide that was absorbed in the single breath. The results indicate how well oxygen passes from the lung's "air sacs" across to the blood.
The DLco is the most sensitive measure of the pulmonary immunopathology. We keep telling folk about that, time and time again."
DLco will follow IP and not necessarily get monotonically better. FVC and FEV (spirometry) should improve (roughly) progressively
...Trevor...
-DLCO measures diffusing capacity, or how well oxygen passes from the lung's air sacs into the blood. It's really the whole point of breathing. You can find more information about the process of diffusion in Merck's Manual.
When there is inflammation in the air sacs (called alveoli), the exchange of gases will be impaired. Inflammation of the alveoli (alveolitis) is a classis symptom associated with sarcoidosis, so an increase in alveolitis and consequently a lowered DLCO is not surprising when immunopathology is high. ~Belinda
See also:
Lung diffusion testing
Illustration of DLco test
Pulmonary Function Tests (PFTs)
Evaluating pulmonary function tests
The overall accuracy of the FVC for restriction is about 60%.(Aaron SD, Dales RE, Cardinal P. How accurate is spirometry at predicting restrictive pulmonary impairment? Chest. 1999;115:869-873.) Based on this sort of accuracy, there is a wide a range of margin for errors.
The PFT results are comparative; they are standardized for standing height, age and gender, and for ethnic group. This is called the predicted value. Predicted values can be selected by the user from amongst 16 sets for adults, and 13 sets of equations for children and adolescents.
You will need more information to comprehend your PFT. For instance, did you have the simple spirometry done in a doctor's office? This usually measures basic air flow: how well the lungs exhale. Sarcoidosis can obstruct the airways when chest inflammation or enlarged lymph nodes impinge airways. Sarcoid can also reduce the lung volume when airways and lungs are filled with fluids from inflammation. Both these can reduce spirometry values.
In a healthy population there is great variation in spirometric values even after taking into account age, height, gender and ethnic group. This underlines the need for putting great emphasis on clinical data and the patient’s previous medical history in interpreting spirometric data. The best predicted value for a patient is the personal reference value, i.e. the value obtained in a clinically optimal period; such personal best values may reveal that values which were within the normal range are not the patient’s optimal values. http://www.spirxpert.com/welcome.htm
Atelectasis can be caused by obstructions or fibrosis. Atelectisis refers to collapse of a lung or a portion of one, due to incomplete filling with air. A PFT with parts of the lung deflated will not be apt to show much improvement. Check with your doc about the possibility of using BiPAP or CPAP until the lung better re-inflates.
Neurological-muscular inflammation can affect test results
Neurological-muscular inflammation can cause impairment of respiratory function and affect test results. Breathing diffusion difficulties from neuro-muscular disease is a broad statement that could have many causes. Since Sarcoidosis is a restrictive disease when affecting the lungs, many times the expiratory phase is longer, making it difficult to exhale enough to register adequate numbers on their equipment. The reduced musculature effort could be translated to poor innervation which would be another way of saying the above. The words neuro muscular apply to all muscle as without innervation from the brain muscles would not work. ~VEZ R.N.
Sarcoidosis testing is different that obstructive test results
Bronchodilators are often offered to sarcoid patients in an attempt to improve breathing, but if PFTs indicate this has no positive effect, a patient can simply feel reassured that this portion of the PFT applies to people with other breathing problems. Most of the time, doctors are much more used to evaluating PFTs from people who have asthma or COPD, so they may not be as familiar with the changes that sarcoidosis may cause to the lungs. I have even seen technicians surprised when use of a bronchodilator did not improve sarcoid PFTs.
Some sarcoidosis patients may even find that a bronchodilator may provoke undesireable coughing, similar to their sensitive reaction to smoke, odors and fumes, and this might affect the PFT result.
You should always discuss any lingering questions with your physician.
Pulmonary imaging
Immunopathology can and probably will make imaging results worse at some point in time if taken at short intervals. Lung imaging might be better after a period of time of using this treatment, but then you might be experiencing immunopathology on the day the imaging is done. The patient and doctor have to look at the big picture to assess how the patient is doing.
Lung imaging is a very limited way of assessing a sarcoidosis patient. It's a systemic disease.
The positive changes on lung x-ray may take more that a couple of years to reveal themselves. Lung x-rays or cat-scans will not cure you, and do give you a dose of radiation each time you are exposed.
Chest xrays CT scans do not provide objective data. They are subjectively read.
"Trying to distinguish between inflammation and fibrosis is one of the confounding things about lungs. Our understanding is that it's rather difficult to determine whether opacities on chest x-rays are inflammation versus fibrosis. Actually, more sophisticated thin-sectioned, high-resolution computed tomographic scans (HRCTs) are usually used to try to determine whether it's inflammation or fibrosis, but even then it may be indeterminate. See this recently published article.
If you remember, we do say in our patient recovery DVDs that chest imaging may get worse on the MP but improve later. The reason we can expect chest imaging to worsen is because when the lungs are have an immunopathological reaction, inflammation will be worse - and that will likely be evident on any imaging.
Something to think about: Some people put a bit of planning into preparing for their chest imaging so they get the pictures done on one of their good days. While on the MP, this is possible by adjusting dosing or making clinic appointments to avoid the worst immunopathology days, since immunopathology comes in cycles related to antibiotic dosing.
Radiation exposure
"Your concern about radiation from CT scans is valid. I am currently in contact with a group of nuclear power station workers who have a very high incidence of sarcoidosis. Given that energy is a key ingredient in changing 7-dehydrocholesterol to pre-Vitamin-D I would be very wary giving any sarcoidosis patients even the amount of ionizing radiation normally acceptable to the healthy population.
In this case it would seem that the CT scan results would not change Doc's therapeutic decisions, and therefore am puzzled why Doc would insist on them. ..Trevor..
The New England Journal of Medicine (Nov.29, 2007) reported the average American's radiation exposure has doubled since 1980, largely because of the booming use of CT scans. A patient undergoing an abdominal CT scan receives over 50 times more radiation than in a standard X-ray. A person who receives two scans is bathed in as much radiation as if he stood two miles from ground zero at Hiroshima.
For a more readable synopsis and comment, see http://www.msnbc.msn.com/id/22010076/
Part of the research report says:
Although most of the quantitative estimates of the radiation-induced cancer risk are derived from analyses of atomic-bomb survivors, there are other supporting studies, including a recent large-scale study of 400,000 radiation workers in the nuclear industry who were exposed to an average dose of approximately 20 mSv (a typical organ dose from a single CT scan for an adult). A significant association was reported between the radiation dose and mortality from cancer in this cohort (with a significant increase in the risk of cancer among workers who received doses between 5 and 150 mSv); the risks were quantitatively consistent with those reported for atomic-bomb survivors.
Imaging is subject to interpretation
As you know reading X-rays(+cat scans) is an art that can vary somewhat based upon the reader and what they emphasize. I suspect that the images will vary somewhat with levels of immunopathologic response. I see no good reason for having a cat scan more than once a year, so as to avoid unnecessary radiation. ~P.B. RN
Errors in imaging interpretation are common
Ehsan Samei of the Advanced Imaging Laboratories at Duke University Medical Center recently summarized results from a variety of radiological procedures: "Currently, the average diagnostic error in interpreting medical images is in the twenty percent to thirty percent range. These errors, being either of the false-negative of false-positive type, have significant impact on patient care." How Doctors Think by Jerome Groopman, MD.
See Diagnostic imaging
Timetable for improvement
Pulmonary Function Tests (PFTs) usually do not significantly improved until one year, although some MP members have had improvements before then.
"The MP is a healing process. Of course the immunopathology is going to increase interstitial inflammation. You get interstitial inflammation when you kill the bacteria." ..Trevor..
Keep in mind that PFTs are subject to interpretation, because there is variability on the test methodology (effort, etc), and sometimes even in equipment. Therefore, they do not provide objective data.
We generally expect spirometry values to worsen with immunopathology. In a patient with significant lung involvement, spirometry may not improve for a year or more as you work your way through immunopathology."
"It's a little-recognized fact that sarcoidosis can cause PFTs results to indicate obstructive lung disease (sarcoidosis is considered a restrictive lung disease). This is because chest lymph nodes may become so enlarged they compress airways and/or granulomas themselves may obstruct airways. I would say that, by showing an improvement in your obstructions, your lungs are already showing some improvement. It will take months for the other tests, like the DLCO, to improve.
You know you are on the right track because you've taken charge and you are already feeling the results. The prednisone and other drugs you took before were artificially suppressing your immune system, which may have allowed your PFTs to look better than you really were. Now the antibiotics are supporting your immune system to enable it to get rid of what was causing the sarc. The Herx reaction is going to make the PFTs and lung imaging look worse for a while, as your immune system works on the lungs.
12-18 months after beginning MP treatment, expect your doctors to be smiling.
I know fibrosis is a scary thought, but many patients on this forum have fibrosis and are doing well. It is possible to function quite well, even with pulmonary fibrosis - after you kick the disease. I am one proving this is true; I am in better physical shape than I was a decade or two ago. But it took a couple of years on the for me to feel like my lungs and physical abilities (stamina, strength) were really improving. Up to that time, my symptom resolution revolved around getting rid of intense pain, getting rid of insomnia, cognitive deficits, digestive problems, etc.)
I suggest the bottom line is this: Whether your lungs have more inflammation or fibrosis, how much time and money to you want to expend toward tracking that down, and how does that change your treatment options." ~Belinda
No need for frequent testing
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. ..Trevor..
http://sarcinfo.com/xrays/"
Micromanaging the healing process
" .... the biggest issue, IMO, is trying to micromanage the healing process. If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. That's the problem with micromanaging - when you get too much data it becomes not easy to analyse what is happening. Healing takes place on a yearly scale, and testing should follow it in the same timeframe, IMO." ..Trevor..
See also MRI and CT scans <<<
Which diagnostic tests do I need?
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