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Meg Mangin R.N.
Research Team
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Posted: Fri Sep 7th, 2007 05:57 |
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What should I know about respiratory immunopathology?
Early recognition
Early recognition of immunopathology and its management are very important when you have respiratory symptoms. See:
What to do when immunopathology (immune system reaction) is too strong.
My breathing is worse. What should I do?
What can I do for my intolerable cough?
Immunopathology may be mistaken for an upper respiratory infection. See My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)
Any symptom that correlates with MP therapy may be due to immunopathology. Whenever the cause of symptoms is in doubt, try an extra Benicar. Increase Benicar to every four hours around the clock (for 24 hours if no immediate result) to see if it dampens symptoms.
You should have a personal tool kit to manage immune system reactions with specific instructions. If symptoms become intolerable, see My immune system reaction is too strong. What should I do?
If adjustment of MP meds fails to control respiratory symptoms, a steroid inhaler/puffer (or nasal spray) might be effective quickly in an emergency situation.
Guaifenisen
Guaifenisen may palliate all lung symptoms, not just coughing and reduce systemic immunupathology also. Use normal doses of an OTC product that does not contain any other ingredients. You might find a slight surge of symptoms during "withdrawal" from periods of intense guaifenesin use. Details are in What can I do for my intolerable cough?
Congestive Heart Failure
Congestive heart failure symptoms develop more slowly and most folks know if they have this problem. Ask your doctor what symptoms you should report. For example, when does s/he want to know if you gain weight, experience swelling or increased shortness of breath.
If you experience significantly increased or sudden:
- exercise intolerance
- severe shortness of breath
- fluid retention or swelling
- weight gain (3 lbs overnight or 5 lbs in 3 days)
Do not take your next dose of antibiotic/s and increase Benicar to 40mg every four hours until symptoms are gone or minimized.
Oxygen
Use of palliative oxygen is most effective. If you are at risk, please ask your doctor to assess your need for supplemental oxygen.
Those who have severe respiratory disease should be encouraged to keep their oxygen concentrator handy well into phase 3, out of an abundance of caution.
Breathing Tips has links to all the breathing/ respiratory Information.
If your respiratory function is poor, it is important to prevent an acute infection.
If you are ever concerned, don't hesitate to contact your doctor. Your doctor may also contact Dr. Marshall.
Fibrosis may cause severe unexpected symptom flares
Patients on the MP who have severe respiratory involvement need to be aware that they face some special risks as their lungs heal. A flare in respiratory symptoms may occur at any time, even after respiratory inflammation seems to have been resolved.
We are seeing that fibrosis in lungs slowly remodels after the patient has been returned to health. It is part of the gradual recovery which may creep up on you over many years. The more fibrotic tissue a patient has accumulated, the more sensible it is for that patient to continue with the MP until all signs of the disease have disappeared.
There is currently very little known about pulmonary fibrosis in sarcoidosis. Since nobody has been healed of the disease (prior to the MP) the scientists have just been guessing at what causes the fibrotic tissue deposition. Fibrotic tissue in sarcoidosis is caused by the deposition of collagen around areas of infected tissue which the immune system has not been able to properly deal with.
As the body heals (with the MP) the fibrotic tissue (collagen) (scar tissue) will 'remodel' and be replaced by new healthy tissue. We have no data yet on what happens at this point, as nobody has ever recovered from pulmonary sarcoidosis before the MP, and scar tissue was thought to be permanent. We now know that it isn't, that it remodels, but beyond that is still unchartered territory. Remodelling occurs as the the Vitamin D metabolites normalize, for much the same reason as arthritic joints recover during the several years of phase 3.
As the fibrotic tissue is remodeled (by the body's own processes) there will be times when the encased pathogens are released. Due to a surge in immunopathology, this may cause extreme shortness of breath and/or coughing that might be alarming. Pay attention to the nature of the cough. As the immune system starts to properly work again, the coughing changes perceptibly. Whereas the coughing of sarcoidosis is shallow and non-productive, once the immune system kicks back in the coughing is always productive, and usually involves more chest muscles, particularly the lower ones.
Incentive inspirometer
If your activity level is low and you are unable to tolerate mild exercise, use of an incentive inspirometer to expand pulmonary tissues may excercise the lungs to promote a more even bacterial kill during the process of recovery. This may prevent uncontrollable respiratory immunopathology during stage 5 of the immune system recovery. See purchasing information here.
Pneumothorax
Sarcoidosis patients often have surgery on their lungs. The open lung biopsy, by thoracotomy, is a very invasive procedure that (thankfully) is not used much any longer. But even biopsy by bronchoscopy can lacerate the lung tissue a little, causing adhesions to form and weaken lung tissue. Therefore, patients who have had a lung biopsy are at higher risk to form adhesions which could cause a spontaneous air leak in the lung (pneumothorax). This could occur suddenly or gradually and usually results in an alarming increase in dyspnea (shortness of breath). Usually the pneumothorax will heal on its own but if symptoms are very distressing, despite use of oxygen, fluid may have accumulatived in the chest cavity and palliative treatment may be needed that requires hospitalization.
Sarcoidosis patients who have had a lung biopsy (or any patient who has had lung surgery) are at risk for pneumothorax due to the lung inflammation which occasionally results from extreme Stage 5 immunopathology, because the tissue in that area of the lung has been weakened. This causes a sudden increase in shortness of breath (SOB) as a portion of the lung collapses. The tissue must heal on its own to reseal the barrier and allow the lung to inflate properly. The usual treatment is oxygen. If the leak is large enough, a chest tube may be necessary to help the lung expand and reduce SOB.
Our experience has been that there is a low likelihood of survival should sarcoidosis patients seek immediate help from emergency room staff. Please remember that when you are in hospital, neither your family, nor your own doctor, nor this Foundation, have any ability to help you receive appropriate care. At least one member of the cohort has died after inappropriate hospital treatment. It is important to take all measures to palliate SOB and try to remain at home, under the care of your MP-prescribing physician.
We are therefore now recommending that anybody who has had a Thoracotomy, Mediastinoscopy or Bronchoscopy biopsy, or who has been dependent on oxygen at any time prior to starting the MP, should have emergency oxygen available in case of SOB during Stage 5. You will need a prescription from your physician in order to buy an oxygen concentrator or obtain an oxygen bottle and tubing/cannula/mask. Please understand that few cohort members will suffer from severe Stage 5 immunopathology; we are making this suggestion out of an abundance of caution.
If your insurance won't cover the cost of oxygen, a second-hand concentrator, if you can afford the $400 out-of-pocket cost, may well allow you better peace of mind. Unfortunately, oxygen for human use is regulated by the FDA, under prescription, and so we cannot talk as much as I would like about the other options - the law shifts that responsibility to your physician.
..Trevor..
Throat tightening
A feel of throat tightening, lump in the throat or difficulty swallowing is due to inflammation causing a lack of muscle coordination. This is reported often by folks with Th1 disease. Take measures to reduce immunopathology. If symptoms threaten to close airway, seek medical attention immediately.
Swallowing is a process that requires correct functioning of the salivary glands, tongue, pharynx, larynx, esophogus and associated muscles and nerves. It is not unusual for people with sarcoidosis or other Th1 disease to experience dysphagia, difficulty swallowing as a symptom and as immunopathology.
It is possible for dysphagia to begin abruptly, but you can be on the alert for alterations in the functioning of your throat and voice box which would signal you might also have a problem if you ate at that time. The vocal cords must be able to close properly to avoid choking.
To avoid experiencing this intolerable immunopathology by maintaining the Benicar blockade, ensure that your Benicar dosing doesn't lapse before you eat. It will not do any good to try to take oral Benicar at the time you are having dysphagia. Chewing the tablet and placing it under the tongue may provide symptom relief. See How to make Benicar act faster.
Anxiety
A medication for anxiety may calm respiratory symptoms.
Emergent treatment
Emergency room personnel should know that a patient is on the Marshall Protocol. Please see Information for Emergency Room personnel.
It is recommended you print it out and add your personal medical information such as diagnosis and medications with the contact information for the person to notify in case of emergency.
Put it in a clear protective folder and keep a copy in a handy place in your home (ER personnel often look on the refrigerator for info) and in the glove compartment of your car.
See Information for emergency personnel
Before you seek emergency assistance, be sure you and/or a close family member is familiar with the information in CAUTIONARY WARNING FOR MEMBERS WHO MAY BE HOSPITALIZED
Related FAQs:
The over-exuberant immune system response
My breathing is worse. What should I do?
What should I know about supplemental oxygen?
My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)
My respiratory function is poor. How can I prevent an acute infection?
What can I do for my intolerable cough?
How To Manage Immunopathology
Pulmonary Involvement (PFTs)
Quercetin
Immunopathology Tutorial
How To Identify Immunopathology (Herx)
How to assess symptoms
When to increase antibiotics
When to take low-dose, high-frequency minocycline
Factors that contribute to immunopathology
Is it an allergy or is it an immune system reaction?
What is the best way to assess lung function?
What degree of healing is possible with the MP?
Last edited on Sun Oct 5th, 2008 02:21 by Meg Mangin R.N.
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