Hospitals and emergencies - For Patients
Hospitalization exposes fragile patients to additional serious problems, such as antibiotic-resistant secondary infections, emboli, medication side effects or other serious adverse events. Compromised Marshall Protocol (MP) patients may not be able to combat these complications.
The following suggestions are meant to prevent the need for hospitalization and provide guidance for MP patients who find themselves hospitalized or in an emergency situation. MP patients should print out these suggestions, put the document in a folder for easy reference and take it with them to the ER or Urgent Care.
Note that the legal rights associated with medical care and hospitalization set forth in this article are applicable to patients in the United States and may not apply to patients in other countries.
Notice for emergency medical personnel
Emergency medical personnel should know that a patient is on the MP. There is a very important single page notice for health care providers that provides essential information that every emergency medical personnel should be made aware of.
All MP patients should:
print this notice out and add personal medical information, including diagnosis, medications, MP physician's phone number and contact information for the person to notify in case of emergency,
put it, along with a copy of this article, in a clear protective folder, and
keep a copy in a handy place at home (EMT personnel often look on the refrigerator for info) and in the car.
occasionally check
the single page notice to be sure they are carrying the most recent Emergency Instructions..
Minimizing risks of hospitalization
The following guidelines are meant to help MP patients minimize the risk of hospitalization:
Do not minimize the seriousness of your condition to yourself or your family.
Follow the MP cautiously and slowly to avoid an exacerbation of symptoms that becomes so severe you feel you need to go to the ER or Urgent Care.
Ask the study site moderators for help as soon as you think you may have a problem.
Make sure a family member or friend knows how to access the study site should you be too ill to do so yourself.
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If you have respiratory difficulty, ask your health care practitioner about having a supply of
oxygen on hand for an emergency situation.
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Ask your MP health care practitioner to alert his/her staff to fit you in immediately if you should need to be seen urgently.
Ask your MP health care practitioner to call Dr. Marshall for suggestions regarding your care if s/he is not sure what to do.
Power of attorney for health care
MP patients should ensure that any previously-written advanced directive (living will or power of attorney for health care) is current, and that the health care agent (designated decision-maker) appointed is trustworthy and understands the implications of hospitalization for a patient on the MP. The health care agent must also be aware of the MP patient's health care desires in case the patient is unable to make them known when necessary.
At the emergency room or urgent care
If emergency medical care is needed (ambulance, emergency room or Urgent Care), the MP patient or his/her health care agent should know the following:
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Ask the ER physician to call your MP health care practitioner.
You have the right to refuse treatment to the extent permitted by law and to be informed of the consequences of your refusal.
You have the right to be involved in all aspects of your care, including treatment decisions.
Have someone with you who will be assertive enough to advocate for you.
If you are incapable, a member of your family or your health care agent should be allowed to participate in these decisions. Make sure they are familiar with the MP guidelines.
Do not attempt to explain the MP to emergency medical personnel. Just show them the notice for emergency medical personnel described above. The link is now found near the end on the front page of this MP knowledge site
The focus of treatment should be on stabilizing the acute problem with standard methods that will not compromise the MP and which will allow you to return home as soon as possible rather than be admitted to the hospital.
Question everything and ask your advocate to take notes.
If you have sarcoidosis and oxygen is not offered and you are short of breath, ask for it. (Assure the doctor oxygen is appropriate to treat sarcoidosis.)
If you need a
non-MP antibiotic, insist on Ceftin, Biaxin or a fluoroquinolone (such as Levaquin) so you can go home and continue the olmesartan (Benicar) blockade. (You may need to discontinue MP antibiotics during the duration of treatment with a fluoroquinolone.)
Refuse all
steroids in any form (oral, IV, injected or inhaled).
Insist on increasing the olmesartan (Benicar) blockade by taking 40mg orally every 3-4 hours and 20mg sublingually (dissolved under the tongue) with each oral dose.
You do not need the ER physician's permission to resume the MP when you return home.
If hospitalization is suggested
If hospitalization is suggested, the MP patient or his/her health care agent should do the following:
Ask for specific reasons why this is necessary.
Ask if you can receive the same care at home, perhaps utilizing a home care service while being supervised by your MP health care practitioner.
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If hospitalized
If the MP patient becomes hospitalized, he or she, or his/her health care agent, should know the following rights:
You have the right to refuse any treatment. (You may have to sign a waiver.) Ask to be allowed time to think it over before you agree to a treatment.
You have the right to know the identity, professional status and professional credentials of health care personnel, as well as the name of the health care practitioner primarily responsible for your care while you are hospitalized.
You have the right to receive an explanation regarding your diagnosis, treatment, medical procedures, and prognosis (what to expect) in terms you can understand. When it is not medically advisable to provide this information to you, it should be relayed to appropriate family members or your designated decision-maker.
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You have the right to voice concerns or complaints regarding your experience as a patient. You are entitled to information about the mechanism for the initiation, review, and resolution of any complaints or concerns. If necessary, contact the customer advocate, hospital ombudsman or social worker for help.
Also, strive for the following:
Have an assertive person (who will ask lots of pointed questions of everyone) to stay with you day and night, if possible.
In the event that you cannot make decisions for yourself, your health care agent can advocate on your behalf. Make sure s/he is familiar with the MP guidelines and the implications of hospitalization.
Your advocate should keep a diary of your hospital stay.
Insist that your MP health care practitioner be part of the consultative process. Ask if s/he has been consulted when any significant decision is made.
Insist on being told when anybody outside the team of doctors you or your designated decision-maker have met is given a summary of the case, or consulted in any way.
Immunosuppressants such as
corticosteroids (
prednisone, solu-medrol, etc., Enbrel (etanercept), Humira (adalimimab) and Remicade (infliximab) are not appropriate treatments for any patient. Doctors may insist it is the standard of treatment for a sarcoidosis patient.
As the
Notice for emergency medical personnel states, the antibiotics used by the MP (or similar drugs) may cause a strong immune reaction and
should be avoided. In an emergency situation, patients should particularly concerned about receiving high doses of MP antibiotics. Alert your physician that you may have a strong reaction to any of the following:
If a
non-MP antibiotic is ordered, insist on a fluoroquinolone until a culture proves a different antibiotic is needed.
Patients on the MP should not take nimesulide (Aulin / Mesulid / Nimed). It could possibly cause internal bleeding.
rivaroxaban (Xarelto) increases the risk of bleeding and can cause serious or fatal bleeding. A specific antidote for rivaroxaban is not available.
telmisartan should never be taken by someone in a hospital setting, it will render the patient increasingly vulnerable to infection.
Refuse all
antifungals. Refuse all vitamin D supplementation in food, IV fluids or tube feedings.
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Insist that your environment be altered to reduce lighting to
30 lux.
Treatment during hospitalization should be focused on stabilizing your acute disease exacerbation or infection.
Demand to continue the olmesartan (Benicar) blockade, but realize that it may be impossible to persuade a specialist to allow the blockade to continue while hospitalized. Note that some hospitals may not include Benicar in their formulary.
The goal of the hospitalization should be to overcome the acute problem in order to be released from the hospital as soon as possible.
Make your wish to return home as soon as possible very clear. Ask for supportive home services to facilitate this. You may need 24/7 caregivers, oxygen, IVs, nebulizer, etc.
Special considerations for hospitalized sarcoidosis patients
Sarcoidosis patients are especially at risk when hospitalized. Misinformed doctors, believing that sarcoidosis is incurable, might consider the patient’s situation to be terminal and not support his/her efforts to overcome seemingly insurmountable odds. Patients in respiratory distress may be given immunosuppressants inappropriately, even in the presence of an acute infection. Therefore, hospitalization could be dangerous to the well-being of MP patients with reduced respiratory functioning.
In addition to the considerations listed above, these additional considerations are applicable to sarcoidosis patients:
Insist that no one caring for you is allowed to consult a sarcoidosis expert or pulmonologist or any other health professional about your treatment without your (or your designated decision-maker) express written permission. You do not waive your right to privacy under the Health Insurance Portability and Accountability Act (HIPAA), a federal law, and no attempt should be made to bypass that right by hiding your identity. This will prevent doctors from consulting any “expert” on sarcoidosis who is likely to tell them to discontinue the MP.
Make sure the only sarcoidosis expert consulted is Trevor Marshall, Ph.D who has published papers describing both the cause of, and cure for, pulmonary, cardiac and neuro-sarcoidosis. In an emergency, he can be reached 24/7 at 805-492-3693 (Pacific time).
You should refuse any “standard treatment” for chronic sarcoidosis, because this condition is being treated effectively by another health care practitioner.
Special considerations for hospitalized MCS patients
Multiple chemical sensitivity (MCS) patients may want to talk to their doctors about a private room being medically necessary, not only to prevent catching an infection from others, but to allow them to breath easier.
This is something I have always done. I have also refused to allow anyone in the room that I become reactive to. I tell them to check with my primary care doc who knows the extent of my MCS. Especially now, they keep the gel hand sanitizers everywhere. I am extremely reactive to this. It took a while for me to realize that this was a big trigger for me. Also, I do not let the cleaning people use any chemicals in the room. They should just sweep, remove trash, but use no cleaning products. At first when I used to request these things, I was looked at strange, but now I demand this to be done, and don't care who thinks I am crazy, because I am the one who suffers.
LH1953, MarshallProtocol.com
Patients experiences
When I hospitalized, I found out that the hospital did not carry Benicar. I think the hospitals do not carry it because of the cost of it.
Freddie Ash, MarshallProtocol.com
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