Related article: Supplemental oxygen
Related article: Supplemental oxygen
Lung (pulmonary) function tests are a group of tests that measure how well the lungs take in and release air and how well they move gases such as oxygen from the atmosphere into the body's circulation. Like other measures of health, MP patients who experience immunopathologyA temporary increase in disease symptoms experienced by Marshall Protocol patients that results from the release of cytokines and endotoxins as disease-causing bacteria are killed. may expect lung function to temporarily decrease.
Most of the improvement in pulmonary function among MP patients can be quantified in two parameters: DLco and FEV1.
Trevor Marshall, PhD
It is generally expected that in earlier stages of the Marshall Protocol, all symptoms and signs of disease will become worse with immunopathology. This includes lung function. For patients with lung involvement, it is probably best to measure progress with pulmonary function, not imaging such as x-rays.
In a spirometry test, patients breathe into a mouthpiece that is connected to an instrument called a spirometer. The spirometer records the amount and the rate of air that you breathe in and out over a period of time. For some of the test measurements, patients may breathe normally and quietly. Other tests require forced inhalation or exhalation after a deep breath.
DLco (Diffusing capacity of the lung for carbon monoxide) is the extent to which oxygen passes from the air sacs of the lungs into the blood. Commonly, it refers to the test used to determine this parameter.
Technically, the gas-transfer ability of your lungs (measured by the gas transfer factor, DLco) drops from the 50% (or so), which it normally is in a sarcoidosis patient. Eventually, that DLco returns to levels near 100%, near normal, and that is why patients who have recovered can go from 24/7 oxygen to no longer needing it. But if you push your antibiotics too fast, and the bacterial die-off gets too rapid, your gas transfer can also go down during 'Herx.'
Has Doc suggested making your Benicar dosing more frequent while you are exhibiting the cardiac and pulmonary difficulties? Increasing the frequency to 40mg every 4 hours often helps while you wait for the die-off to drop. Die-off doesn't stop immediately you stop the antibiotic/s, it can take days or weeks.
Trevor Marshall, PhD
Oxygen saturation may or may not drop in sarcoidosis patients. It depends on how much damage the lungs have sustained. The disease may affect muscles and nerves as well as the lung's air sacs to make breathing a real chore, even with adequate oxygenation.
Tools to check provides a helpful assessment list. If you are having problems, please check if you need to make adjustments in any area, and feel free to ask on the study site.
A pulse oximeter is an excellent tool for someone with restrictive lung disease (e.g., sarcoidosis) who is on oxygen. The readings will help determine the level of oxygen needed in different situations so one can adjust your oxygen flow to maintain oxygen saturation of 90% or higher.
It may be a good idea to have your doctor check your oxygen level via pulse oximeter and have portable oxygen on hand (for travel) and an oxygen generator with a pulse oximeter at home for use in times of need. A little oxygen can go a long way in helping people with guppy breathing and bad air starvation attacks, and it is always better to be safe. If other people further along are indicators, you would eventually get to the point where you would not need the extra O2.
P. Bear, MarshallProtocol.com
According to the Pulse Oximeter User's Manual:
Lung imaging is a very limited way of assessing a sarcoidosis patient as it is a systemic disease. Also, it is not a “patient important” outcome.
Another problem with imaging tests such as chest x-rays is that they do not provide data objectively.
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 x-rays 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….
Imaging is an unreliable indicator of the degree of sarcoid inflammationThe complex biological response of vascular tissues to harmful stimuli such as pathogens or damaged cells. It is a protective attempt by the organism to remove the injurious stimuli as well as initiate the healing process for the tissue.. I am not sure why it is still embraced by the pulmonologist community - maybe because it is the only thing they can understand.
Trevor Marshall, PhD
I have great news! I passed my “flying test” (15% test) I just returned from a Pulmonary Function Test and have significant improvement! The technician was very surprised to see me because he thought the last time I was tested (May 2006) was my last. He said that last time he saw me I had one foot in the grave and spiraling down fast. However, I am now able to fly without oxygen and there has been a 30 percent improvement in my oxygen diffusion from my lungs to my blood. He said this is unprecedented. Never in his 30 years of conducting pulmonary test has he seen an improvement in anyone as far gone as I was! The technician is a very somber, straight laced guy and he was doing flips around the room (well… mentally, not physically!) I am so happy…. I am going to get well!!!!
My DLCO is now at 45% (up from 30% in May 2006 on 6L of O2.) The technician predicted that my DLCO would be at 60% by the results of my flying test and my skin color. I remember Dr. Marshall stating that one's DLCO may not accurately predict how well one can breathe while going through the MP…and not to be dissappointed if it is not as high as one would expect…(I remembered that so was not disappointed!)
I am thrilled to share this news! My sincere gratitude to Dr. Marshall and his team of health professionals and all MP members who keep in touch with their encouragment. May we all continue to improve our quality of life!
Cheers! Sue
Sue Lyons, MarshallProtocol.com
I did go ahead and bought an oximeter off ebay today. Instead of bidding I did the buy now thing. I had been watching them and the final price wasn't much different. It is the small portable fingertip unit. It is similar to the one my doctor uses. Cost was $125 with no shipping fee. It has been shipped already so I should have it in a few days.
RevDennis, MarshallProtocol.com
You will find out that your oximeter has its own little quirks. It needs time to register. Make sure your green light is on before you rely on your readout. Once in a while hubby's oximeter will give unusual results, that can't possibly be happening. He usually keeps his sats about 95-97% unless he is going without the oxygen, then he is happy keeping it between 90-92%. Heck, he has buddies that register about 92% and they are not even using O2.
Initially, if we saw a really low heart rate on the oximeter I would grab his wrist or press his neck and check his pulse rate. No problem, it would be OK. One can also have little erratic beats occasionally and the oximeter doesn't really know how to measure these. Sometimes it isn't seated snugly over the end of the finger, cold hands can affect the reading and if your sats are really low it takes time to register. A drop of a few seconds probably is the oxymeter, if it continues–it's you. Take precautions. You will get used to the idiosyncrasies of your meter and grow to really appreciate its usefulness.
Jill, MarshallProtocol.com
It has been a very long time since I have had the opportunity to post my progress. I have been lurking and reading everyone elses progress and thought that it was time that I give an update. The last time I posted I was battling some type of virus. I went to see my MP doctor because I still had a fever after about 7 days. When he listened to my chest he said that I was wheezing and wanted to get a chest xray. My chest xray showed that my whole left lung had collapsed but also showed substantial improvement in the lymphadenopathy as compared to the CT from 2008 My right lung is clear. The radiologist wrote substantial improvement of sarcoidosis. My MP doctor was perplexed. I had no symptoms. I was not short of breath, my pulse ox was 98% on room air. I just had a fever that finally went away after 10 days which confirmed that I was fighting a virus. It was crazy. Anyway, my MP doctor freaked out and wanted me to see a pulmonologist. In the meantime he put me on antibiotics (Levaquin) for 15 days.
I went to see the pulmonologist and he could not tell me why my lung had became atelectasis. My pulse ox was still between 98% and 100% on room air, I was not short of breath but he started ordering chest xrays every week along with PFTs. He also wanted me to use an air vest that works to shake my chest to remove mucus plugs. He believed that some mucus plugs clogged my airway and that is why the lung collapsed. He then wanted me to take prednisone because he claimed that if the lymph nodes shrink more that would also assist in the lung re-expanding. Now mind you the chest xray showed the lymph nodes had shrunk substantially. I had never been on prednisone only the MP. He told me he hated the MP and that it will never work for sarcoid. Hmmmm if my left lung had not collapsed the chest xray would have read substantial improvement of sarcoidosis with no mention of lung collapse.
So I gave in and took the prednisone at 40mg a day for a couple of months thinking it would help with re-expanding my lung but when the lymph nodes started getting bigger I started questioning why I needed the prednisone. It wasn't doing anything for me except suppressing my immune system. He agreed but we actually got into an arguement because I voiced my opinion about prednisone. He told me that he had treated people for 20 years with sarcoid and about 70% of them have the sarcoid burn out. I said wait a minute, I thought we were using the prednisone to help the lung re-expand. I said and why hasn't the sarcoid burned out for me? And what exactly does burn out mean? He could not tell me and boy he was really pissed when I said that. I told him that I am not a patient who does not know what is going on. I know what medications I am on and how they affect my body. I studied anatomy and physiology and I am very knowledgable about the disease process and how medications work. I told him you will not be able to just tell me anything without me asking questions and doing my own research and if he didn't like it I could find another doctor. I have a right to refuse anything I do not agree with. He was really nice after that.
Anyway, we started weaning the prednisone and when I got down to 10mg I started the benicar again to help with the weaning process. I was only on the prednisone a few months but I should not have taken it at all. The lymph nodes did not shrink but actually were getting bigger so I knew I was right by making a fuss about it. The lung began to re-expand though. Then in December I caught another virus from my son and I was really sick. My fever was 103 and I had chills and a cough, runny nose etc. Still, my pulse ox was 98% -100% on room air but my mistake was going to the emergency room. They freaked out and admitted me. They did not know if I had pneumonia but they wanted to treat me as if I did. They had me on IV antiobiotics. I was on Rocephin, Levaquin and Vanco. The only reason I was on vanco is they drew blood cultures and one out of four came back positive. I was sure it was contaminated by the nurse that drew the culture. But to be on the safe side they gave me one dose and stopped it. All I did was rest. I could have did that at home. After 4 days my fever came down (most likely due to the IV hydration and time) so they released me. But while I was in the hospital, I was receiving chest compressions with an electro flo device. So when I saw my pulmonologist I told him that I wanted one of those because I know that they are pretty successful in treating atelectasis. He looked at me puzzled. And I told him that one of the hospitalists asked me why I was not using a IPPB machine. He looked puzzled at that. That is when I really realized that I am responsible for my treatment.
I have had the electro flo device and the IPPB machine for three weeks and when I went to see the pulmonologist last friday with my husband present, he listened to my lungs and was like, “wow shirley your left lung has great air flow! It sounds really good”! Now why didn't he suggest the chest compression device and the IPPB machine from the get go? Since using the electro flo device I was able to bring up mucus in my lungs that was green intially and is now clear. The vest never produced that result. Now any I will see him again in a couple of months to monitor the atelectasis. When me and my husband listen to my lungs my left lung sounds almost equal to the right lung. So I am curious why my left lung still show some opacities in the upper and lower lobe. I had to get a new MP clinician because my previous MP doctor does not take my current insurance. I found one and she is great. She is a nurse practitioner. I will see her and let you know how things go. As for now, I am back at work now and I feel great. I am on Benicar 40mg QID. I will begin the antiobiotics after I see my NP. We decided that when our son catches something from daycare that I will wear a mask until he is over it because good handwashing alone will not cut it until he is old enough to know how to cover his coughs. December was the one and only time I have ever been hospitalized for anything related to sarcoid. And I doubt it had anything to do with sarcoid because I really think I had the flu or some other type of virus.
So theres my updates. As of now, my only symptoms are pretty much brain fogThe loss of intellectual functions such as reasoning; memory loss; and other neurological abilities that is severe enough to interfere with daily functioning. and that is it. We will see once I get back on the abx. I hope all is well everyone and that all are healing gently. I see that there are some good things going on. Amy and Paul and Trevor have been doing some great things and that is very promising. I printed out a lot of the new information for my NP and gave it to her the first time I saw her. I look forward to posting more now since my son is getting a little more independant. Sometimes too independant. He is 20 months old and into everything. He is starting to talk and so it is really fun to hear what is going on in that little brain. He has been without a runny nose and cough thank God so I hope it stays that way. Still truckin along.
Happy MPing,
Saj, MarshallProtocol.com