 |
| Author | Post |
|---|
Meg Mangin R.N.
Former Team Member
|
Posted: Wed Nov 9th, 2005 04:10 |
|
My breathing is worse. What should I do?
If your respiratory function is severely compromised
For folks at high risk, it is important to determine quickly if symptoms are being caused by an acute infection. See My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)
Congestive heart failure and SOB
Anyone on diurectics (such as Lasix) or cardiac medications to strengthen the heart should be evaluated by their doctor if their breathing gets suddenly worse, they experience a sudden weight gain and/or increased swelling in the legs. An exacerbation in congestive heart failure symptoms may require an adjustment in palliative medications.
Immunopatholgy
Th1 inflammation involving the lungs and/or respiratory tract can cause increased difficulty breathing (dyspnea) and/or a feeling of throat tightness due to the immune system response to the bacteria. An immune system reaction is exactly what is expected from treatment with the Marshall Protocol.
Cold air (especially when it's damp) can present a challenge to inflamed lungs, even if there is no wheezing or noise with breathing. If you wish to go out, you might think about 'going out' indoors - like at an enclosed mall.
Pulmonary function tests
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..
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.
Causes of increased respiratory symptoms
If you read the information in our thread on Sarcoidosis you will see that bronchospasms are not the only thing that can cause wheezing, coughing and feeling not being able to get enough air. Examples are combinations of: throat tightening (also caused by Hypervitaminosis D), granulomas blocking airways, enlarged lymph nodes (and spleen, etc.) impinging upon airways, muscle (diaphram) weakness and alveolitis reducing the rate of gas transfer. Any/all of of these symptoms may temporarily flare due to the immunopathology of Th1 inflammation. Even if albuterol has been effective for you in the past, it may not work for when you are dealing with immunopathology.
The immune system reaction can be mediated in a variety of ways. See My immune reaction is too strong. What should I do?
Rest may resolve shortness of breath (SOB) that happens with exertion.
Conserving energy by pacing activities is very important, as is avoiding aerosal triggers that can exacerbate SOB. See Breathing tips
Anxiety can exacerbate SOB and throat tightness. Taking an anti-anxiety medication prescribed by your doctor may provide some relief. How can I control my anxiety and depression?
Inhalers containing a bronchodilator medication (avoid inhaled steroids) may also relieve SOB.
PB wrote: "It is fine to use Ventolin without Flovent. Hundreds of thousands of folks use it alone. Some people find benefit from Atrovent with the Ventolin, and your doc will know about this. If the Ventolin works by itself there is no need for any other lung med. Flovent is to be avoided routinely because it is a steroid, but it could still be used in an absolute emergency situation. It is much better to control the immune system response with Benicar and antibiotic adjustments, as flovent shuts down your immune system."
Breathing exercises can improve breathing ability and reduce SOB. A respiratory therapist can provide guidance for breathing exercises and many clinics have respiratory programs to teach patients how to cope with reduced respiratory function.
Palliative medications
If you need temporary relief of your symptoms such as shortness of breath, nasal congestion, or pain, contact your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms.
Some pulmonologists will give mucomyst by high flow nebulizer to attempt to thin secretions, same idea behind guaifenesin pills or syrup. I am not totally convinced these help much, but may be worth a try. There exist portable HFN machines. Sometimes respiratory therapists use big vibrators on the chest wall to try and break loose congestion or postural drainage.
Codeine is very useful if you need to suppress a cough that is doing no good, but usually you want to cough up as much as you reasonably can.
Supplemental oxygen may be needed
Pulmonary function tests and/or oxygen saturation levels as measured by pulse oximeter may be temporarily worse due to the Herxheimer reaction. Supplemental oxygen used at night or as needed during the day may be needed to provide palliative relief for intolerable shortness of breath as the MP works to reduce pulmonary inflammation. For extensive details see
Supplemental oxygen
If these above measures do not work and you feel that you are in an urgent situation, you may ask for advice in Urgent Problems Only forum. Be sure to notify your doctor.
It is much better to control symptoms with your usual benicar and antibiotic adjustments, but, should you ever be in an emergency situation - if your Dr agrees, a steroid puffer (inhaler) can be used. and if you have a Dr Rx anxiety med is often helpful. If you are ever concerned do not hesitate to contact your Dr.
Related topics:
Is it an allergy or is it an immune reaction?
I need to take a different antibiotic for awhile. What should I do?
My respiratory function is poor. How can I prevent an acute infection?
CAUTIONARY WARNING FOR TH1 PATIENTS WHO MAY BE HOSPITALIZED
Last edited on Thu Oct 11th, 2007 01:49 by Meg Mangin R.N.
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
|
Meg Mangin R.N.
Former Team Member
|
Posted: Tue Jan 9th, 2007 03:29 |
|
(filelink)
Pneumothorax
If you have had lung surgery or a lung biopsy (especially an open thoracotomy) in the past, you are at risk for developing a spontaneous pnuemothorax as your lungs heal even if you are well along in the protocol.
The American Lung Association list these symptoms of pneumothorax:
- Chest pain on affected side
- Dyspnea (shortness of breath)
- Cough
- Abnormal breathing movement
- Rapid respiratory rate
It may be handy to have supplemental oxygen available in case you develop any of these symptoms. Keep in mind that they are due to immunopathology and should respond to alteration in MP medications. But if symptoms are persistent and intolerable medical intervention may be necessary to drain fluid from the pleural cavity.
---- Dr Marshall wrote ----
"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 bronchoscopy can lacerate the lung tissue a little.
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 this disease 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.
I had 'an adhesion' in 1989, where the bottom of my right lung stuck to my diaphragm, an extremely painful event. This was at the point where tissue had been removed for the thoracotomy biopsy in 1978.
This clearly indicates a need for sarc patients to be particularly careful of leaks in their lungs, which may occur gradually or suddenly, causing large or small pneumothorax.
When we met you were on a very high oxygen flow (if I remember correctly) and I suspect that probably means you may have had some degree of pneumothorax for some time. Especially as you reported that you were able to manage with 2 L/min again yesterday (since treatment of thoracentesis). I suspect that once your lungs are reinflated you are going to have many more 'good flashes' showing just how much disease the MP has chased away "
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
|
Current time is 21:50 | |
|
|
|
|
