Norovirus in lung transplant patient: Can oregano oil be taken orally?

@flonachtegalle congratulations on your transplant! Sorry about your norovirus! As a post transplant recipient myself I was trained to bring ailment symptoms and treatment questions to the attention of my transplant team for their expert advice. I personally wouldn’t try any treatment without their approval. I am especially concerned about your use of metoclopromide. It is a med that has neuroleptic properties and can lead to a movement disorder called Tardive Dyskinesia. Who prescribed your metoclopromide?

thank you for replying to me! It is actually my sister who had the transplant, but she is so weakened by this virus at the moment that I'm trying to get some information. I will check out the metoclopramide more closely. Let me ask: were you prescribed mycophenylate shortly after your transplant? She was not, and other transplant recipients have said that they were given mycophenylate to prevent organ rejection episodes.

My pancreas transplant was 18 years ago, but I have a pretty good memory. I was prescribed Tacrolimus (generic Prograf) and Mycophenolate (generic Cellcept) when I was listed for transplant. Miraculously, thank God I received my transplant 2 1/2 WEEKS (not years) later! Early on I had trouble with my white blood cell count tanking. It was blamed on the Mycophenolate. I was switched to Sirolimus (generic Rapamune). Eventually that was dropped also. Now I am on just Tacrolimus for immune suppression (1.5 mg in the am and 1 mg in the pm). My post transplant drug level labs are done about every 6 months. Things generally get better with time. I am so blessed!
When was your sister’s transplant? What immune suppression meds have been prescribed? What does her transplant team recommend for the norovirus?

I would definitely check with the transplant pharmacist (the one in the hospital not the one meds are obtained through). I was taking Biotin and Turmeric and had cleared it through the transplant team. Then later for other reasons my team asked the pharmacist who said that I shouldn't be taking either one. The one boosts your immunization (not what any of us on immune suppressors want) and the other isn't good to take with all the other meds due to taxing the liver too much.

Hi, and thanks for replying. And congratulations on your own transplant! My sister's transplant was done I think in 2013-14. The Tacrolimus was immediately prescribed, but I don't think the Mycophenylate was. I do need to recheck that. My reason for doing so is that she did have a rejection episode last year, and I think it was only then that mycophenylate was added. So I want to know that. I may be wrong. Up to that point she was doing fairly well, but never completely recovered. But this virus, which apparently has no effective treatment, has been a real threat. The team finally ordered nitazoxanide, which according to most of the studies I've read, can help control symptoms like nausea, diarrhea, vomiting--all of which are life threatening if they persist. I did see one study that suggested the drug may have some direct effect on the virus itself. My disappointment is that the norovirus was not detected or the med ordered for weeks. It was only after our repeated suggestions that a stool sample be collected, that the order was written, and the norovirus identified. The suggestion/request for IV rehydration or nutritional support still has not been responded to with an order or any explanation. I can understand this in a case where high BP is a problem, but that is not true in this case. I'd like to see some labs drawn. I see that others have had similar issues. It looks to me like primary and transplant docs manage different areas of care, and there may be gaps and overlaps. Takeaway--learn as much as you can, communicate with your care team as much as you need to, and help them help you. That's what they want to do.

Thanks for your reply! When you're worrying about these setbacks, it's comforting to speak with someone. Transplant team wrote for the metoclopromide. They did this no doubt because anything ingested, including immune suppressing meds, seemed to be 'sitting' where the esophagus enters the stomach. That's how it felt to her. Before increasing frequency of Zofran dosing, some of the suppressant drugs may have been lost. So it's a tough call. I'm sure the team is familiar with tardive dyskinesia. Now that she has been able to keep down meds and some food for a couple of days, we will suggest to the team that we try to back off the Reglan. I don't know what might better replace Reglan. She's already taking Zofran, but that doesn't do much for upper GI motility. If we wanted to be off Reglan, the only thing I can think of is IV meds, fluids, and nutrition. Hopefully we're to the point now where food and meds can reliable be absorbed......

Hi--thanks for replying and for this information. You're right about checking with the hospital pharmacist as well as the doctors about every single thing that gets into your system--orally, subcutaneously, or otherwise. While these guys know what isn't safe, and what isn't tested to their knowledge, they may not be up to date. So it's worth poking around the reliable research institutions (NIH, Mayo, Cleveland Clinic, etc) for other information. And providing your doc and pharmacist with those links. There may be nothing, but there may be something helpful that has been overlooked. In any case, everything goes through the team before 'trying' anything new.

@flonachtegalle I thought of some other things. Your sister’s norovirus was diagnosed from a stool sample? How often does she have post transplant labs drawn (blood work to check immune suppressant drug levels)? My post transplant lab orders includes a variety of other tests too. That is helpful to catch any complications early on so changes in treatment can be made right away.

When I started immune suppression medication the protocol was to have 2 forms of immune suppression. It had to do with different aspects of the immune response. The 2 types of meds worked in different ways on the immune system. Have you found out what your sister’s meds are?

Regarding Metochloprmide / Reglan and Tardive Dyskinesia, Tardive Dyskinesia is most often associated with psychotropic medications. I’m a former licensed psychologist / therapist and was trained to identify and rate Tardive Dyskinesia in mental health clients. I was prescribed Reglan by my primary to treat gastroparesis (a nasty GI complication of diabetes). Long story short - I developed Tardive Dyskinesia, lost my career and several years of well being due to bizarre uncontrollable movements. I couldn’t walk, talk or care for myself. I knew something was drastically wrong but what? It took a huge toll on my family. They sent me off to a psychiatrist. Myself, the primary nor the psychiatrist made the connection to the Reglan. This went on for years until I was referred to a neurologist. I’ll never forget when after examining me and my records he blurted out “it’s the Reglan, I want you off the Reglan!” After all of that I learned that Reglan can be helpful to treat GI issues but should be the smallest dose possible for a very limited and temporary time. Have you had any response to finding an alternative med for your sister &/or weaning her off of Reglan?

Last but not least you mentioned that your sister felt that food &/or meds were stuck where the esophagus meets the stomach. A thought to try is to ask if there are alternate forms of meds and nutrition such as liquid medication, clear &/or full liquid diet. There are even different “routes” that could be considered. Some meds come in suppository form which is helpful for a patient that can’t keep anything down. Nutrition / hydration can be accomplished in IV type form. These are things to consider and ask your providers about. How is your sister doing?

Thanks for all the information--after getting off the Reglan, were you able to restore the functions compromised? I'm so sorry you went through that. I had a client once who also lost her career, I think due to Reglan. Without divulging her name, I mentioned her difficulty to a friend, a clinical psychologist. There was a drug that should have been given concurrently to prevent these symptoms. I don't recall what it was, but will get back on the net. This is probably not the place to go after information I should get for myself. My sister has had some better days--keeping down food, no vomiting, diarrhea much reduced--a week into the treatment with reglan, zofran, and the nitozoxanide. The nitozoxaanide course ends in a few days, which is known for gastric upset, and I'm hoping to drop the reglan. She will have to make the case to her doctors. Will revisit this in a couple days. Thanks again for your thoughtful response.

@flonachtegalle the years of Tardive Dyskinesia were terrible! But thank God once it was diagnosed and I got off of Reglan I slowly and mostly returned to normal. I still have some mild buccal lingual symptoms if I get very sick, tired or stressed. It is a teeth clenching, lip pursing odd facial grimace with cheek puffing blowing noises that are quite peculiar and not at all conducive to being a mental health therapist!

Be careful about researching medication (and other things) on the internet. Many sites are not reputable at all! Mayo Clinic is trustworthy.

Transplant stories are near and dear to my heart. My hope and prayer for you and your sister is a return to good health soon. Could you keep us posted?