(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I also used distilled water for almost everything. I do make my coffee with spring water. I have no reason why.

Olá @saaa, gostaria de dar as minhas boas-vindas. Também estou usando o Google Translate para escrever para você em português.
Se você está procurando profissionais médicos especializados que pesquisam e tratam MAI / MAC, você pode considerar o National Jewish Health ou a Mayo Clinic. Aqui estão mais informações em português sobre a Mayo Clinic e como marcar uma consulta https://www.mayoclinic.org/portugues

Hi @saaa, I would like to add my welcome. I am also using Google translate to write to you in Portuguese.
If you are looking to expert medical professionals who research and treat MAI/MAC, you may wish to consider National Jewish Health or Mayo Clinic. Here is more information in Portuguese about Mayo Clinic and getting an appointment https://www.mayoclinic.org/portugues

Muito obrigada! Estou preparando a documentação para a MAYO.

Olá! Obrigada, pelo retorno.
Já estive com mais de 15 profissionais entre pneumologistas e infectologistas e já estou na quarta recidiva, em 7 anos. Cada vez vem mais severa. Preciso encontrar alguem de ponta, com remédio novo, não sei.

Oi @saaa

Desculpe, pode haver alguns problemas com a tradução do português para o inglês.

Talvez não deva ter até 4 recaídas em 7 anos - isso parece muito. Muitas vezes as pessoas tomam os medicamentos NTM continuamente por 2 ou mais anos antes de terem o teste negativo pela primeira vez. E, quando o teste é negativo, geralmente precisam permanecer com essas drogas por mais um ano depois disso para garantir que tenham sumido. Talvez você esteja sendo tratado com drogas NTM por um período muito curto?

Se tivermos a sorte de o teste ser negativo após o tratamento, devemos ter muito cuidado para não ter essa doença novamente. O abastecimento de água é um grande problema para nós. E a maioria dos restaurantes e cafés vende alimentos e bebidas que não são cozidos ou fervidos há tempo suficiente. Podemos até recuperá-lo comendo saladas e frutas que não foram limpas com água fervida adequadamente. Até mesmo tomar banho no chuveiro pode ser um grande risco para nós, a menos que limpemos o chuveiro com frequência.

Definitivamente, simpatizo com você - muitos de nós gostariam de medicamentos melhores e muito mais novos para tratar esta doença. Infelizmente, é uma doença rara, por isso muitos dos medicamentos foram originalmente desenvolvidos na década de 1960! Estamos atentos a novas pesquisas, mas novos tratamentos para NTMs não acontecem com frequência e podem levar muito tempo para chegar ao estágio de ensaio clínico.

Você já experimentou o Arikayce, a mais nova droga lipossomal inalada? (Você só pode obter isso como parte de um ensaio clínico. Isso é o que eu e outros aqui estamos fazendo agora).

Annie

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Hi @saaa

Sorry, there could be some problems with the language translation from Portuguese to English.

Perhaps you shouldn't have as many as 4 relapses in 7 years -- that sounds like a lot. Quite often people are on the NTM drugs continuously for 2 or more years before they first test negative. And when they test negative they usually need to stay on those drugs for one more year after that to make sure it is gone. Maybe you are being treated with NTM drugs for too short a time?

If we are lucky enough to test negative after treatment, we have to be so careful not to get this disease back again. The water supply is a big problem for us. And most restuarants and cafes sell food and drink that hasn't been cooked or boiled for long enough. We can even get it back again from eating salads and fruits that haven't been cleaned with properly boiled water. Even washing in a shower can be a big risk for us unless we clean the showerhead often.

Definitely I sympathise with you -- many of us would like better and much newer drugs to treat this illness. Unfortunately it is a rare disease so a lot of the drugs were originally developed in the 1960s! We watch out for new research, but new treatments for NTMs don't happen often and they can take quite a long time to reach the clinical trial stage.

Have you tried Arikayce, the newer inhaled liposomal drug, yet ? (You can only get this as part of a clinical trial. That is what I and others here are doing now).

Annie

Hi Heather, Irene and Jennifer (@heathert @irene5 @jr2366) I need to ask a question or two about Arikayce, please.

Q. 1: I have been taking inhaled Arikayce for a few days now. Did you have more shortness of breath or difficulty breathing in the first week? (If so, did it go away or settle down after a few weeks? I have needed to use my Ventolin Asthma puffer much more often during the day and night since I started the Arikayce.

Q.2: Also, when you boil the aerosol head parts in a pot after each use, how do you get the parts out of the boiling water so they can dry on clean towel? How do you do this without re-contaminating the aerosol parts? It's a dumb question, I know.
I carefully drain the boiled water off and use surgical gloves. Is that okay?

Thanks so much for all your help. I hope everything is going okay for you.
Hugs from Annie

Annie when you take the equipment out of the distilled boiling water use a slotted spoon and transfer each piece to the base mat the company sent. You don’t have to have them sit exactly on each picture of the part. After transferring all the pieces cover all with the gray towel they sent. Once a week wash both the mat and the towel on gentle with a couple of drops of seventh generation soap that was recommended. I hang to dry on a towel rack. When you do the five minute thing prior to boiling use a couple of drops for the washing part. I know you didn’t ask that, but you can’t use regular dish soap and the water for boiling has to be distilled. Use your inhaler prior to using the Arikayce. See if that makes a difference. If the breathing difficulties continue ask your doctor. I found after a couple of weeks of use that calmed down. Hugs. Irene

Thanks very much Irene @irene5. They didn't send me a mat or the towel. I had to buy everything to copy the video -- getting the distilled water was difficult but I've found it online -- for now. The slotted spoon is a very good suggestion -- the video skipped that part (getting the parts out of the boiling water). Thanks so much for your help again, Annie

@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the ventolin is working well for you.
I do not boil my aerosol heads, instead I use a sterilizer so they are not too hot and not in the boiling water, I put them onto a paper towel after to dry. It is very difficult to keep them sterile I feel, my dr said if she put a plate down on a table,M AC would be on it in no time. Maby put them in a open snaplock bag to dry, still not fullproof but ok.

Annie I have a question for you, did you get your Arikayce in Australia and was it subsidized by the govt, or did you get it from overseas, I need some as the big 3 is not working and last time when I was on the trial Arikayce worked for me, I did not want to go off it.
Take care Heather

I had not thought of a sterilizer. Do you use just a baby bottle sterilizer?