Untreated MAC

Posted by desperada @desperada, Aug 16, 2018

I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses – each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs – I walk them EVERY day – no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing – I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.

@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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Good for you – hope all goes well. I REALLY do! Let me know – please.
A lot of people jump to the conclusion CBD is "dope." They actually have it for animals and it works great treating them after their chemo.
Before I responded I checked that State – and CBD IS illegal for Medical use unless it's for seizures. They actually did get that specific.
Here in California beginning Jan. 1 it's all regulated so any harmful chemicals and/or pesticides are tested for, and the product cannot be sold unless it meets VERY stringent requirements for purity, dosage consistency and accuracy. THERE CAN BE ZERO TRACES OF THC IN THE CBD. The farms are inspected and they take soil and water samples.That's why I prefer not to buy it online. I know if it's in a Licensed Dispensary it's been tested and stamped.
Helps me sleep too and seems to suppress my cough. Without any hangover or side effects – that's the best part. I always feel better if I get some decent sleep.
You keep taking care of yourself – good job!

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@ginak…hi there….this is the first time I have read about coffee machines harbouring MAI in the tubing…other areas mentioned…yes..including pop dispensing machines..can you tell me where you found this information…….thanks

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@megan123 Hi Jennifer, I’m not sure where I got that information. I’ve read so many different things, all from on-line searches, it may or may not be accurate. I choose to err on the side of caution. Water from coffee machines is not boiled. In my Keureg, the maximum temperature is 192 degrees, and I can never completely get all the water out. Unless I was running vinegar through it every couple of days I would rather not chance it. I can spare the extra 8 minutes to make coffee the old fashioned way. I guess we all make choices about how cautious we all are. I still opt to take showers because it’s just TOO difficult to get long, thick hair washed and conditioned in the bathtub. And I know the shower is probably the worst place because of the water vapor in the air. Sorry if I’ve mislead anyone.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@megan123
I might have seen it on the news.
“Microbiologist Roman Golash tested the cup containing coffee grounds, underneath where the coffee comes out and the water reservoir. He found bacteria including gram-positive strains like staphylococcus, streptococcus and bacillus cereus. He also discovered enteric bacteria, or bacteria of the intestines, like e-coli.May 11, 2015
Nasty germs may be lurking in your coffee maker – CBS News
CBS News › news › nasty-germs-may-be…

“It's not just Keurig and other single-serve machines that could be growing swarms of germs — traditional coffee makers will also house bacteria, yeast and mold if not sanitized correctly, because the hot water used in the machine isn't enough to decontaminate the pot.May 21, 2015
Your Keurig Machine May Be Covered In Bacteria And Mold | …
https://www.huffingtonpost.com › keurig…

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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Thank you so much for this info…I looked it up and did find some info….I don't want to reinfect myself, so this is a xcellent information that you posted…I have MAC, MAI, …and am presently on the big 3…..it did say u can clean out with vinegar, adding to water dispenser…start the brewing process, stop half way, and let sit for 30 minutes…I know vinegar will kill MAC, if left for 30 minutes….I drink one cup a day, and so enjoy it…have really cut down when retired….lol

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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I found Heinz Cleaning Vinegar in a gallon jug in Walmart in the household cleaning products section. It's a lot cheaper than buying the smaller bottles of vinegar.

Liked by tdrell

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@ginak I think if we could actually SEE the harmful bacterias all around us; we'd have a freaking heart attack.

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@ginac I have a pour over device. Sits over your cup, put in a filter and your grounds and pour your boiling water over and it drips into your cup. It is a bit slower but nothing is sitting in water or tubes . Cost me $5.

Liked by ginak

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@sophie1019 @tdrell I saw Dr Lipchik at Froedert once and he was very informative.. Checked my immune status and told me VitaminD is the best to take for Immunity. Unfortunately, my insurance won't cover Froedert. I see Dr Rihawi at St Luke's and Dr Brummitt in Infectious Disease also at St Luke's. Dr Rihawi has the largest number of MAI patient's in Milwaukee area. Dr Lipchik gave me allot if information though about why you have to take the antibiotics so long…. The MAI bacteria is so slow growing that it takes allot of time to get all the bacteria in the vulnerable stage to kill it. He said some bacterias like staph or strep divide every minute or so, so you need short term antibiotic. MAI takes months so therefore long term antibiotics.

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@tdrell I live near Milwaukee too and work in Milwaukee one day a week and other days in Lake Geneva. Can you tell me who your Pulmonologist is that yelled at you. I got yelled at when I went for a second opinion.. Just wondering if it is the same doc. There are 3 of us in the Milwaukee area now (that I know of)

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@desperada Hi, Desperada, I, too, have been diagnosed with Bronchiectasis, Chronic. NIH and Mayo (Morie Gertz) says that CB is almost an obligate sign for some forms of Amyloidosis, and probably also for Evans Syndrome. Mine is a Lite Chain form of Amyloidosis, Gelsolin, which does not usually show itself until around age 70-80. It is uncurable at this point, but miracle meds are coming out every week or so, such as patisiran, etc. City of Hope is usually a very good diagnostic clinic for this stuff. Anyway, I have been diagnosed with lots of stuff, including CB and MAC through the years. I also have a handful of cancers, so my prognosis is not good. But ask your hematologist to run a Bindings Site SERUM FreeLiteChain misfolded protein assessment for a clue. Anything over 2.00 mG/deciliter will give a strong clue, even obligate. Medicare, if you are covered, pays for that test.

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@oldkarl All bronchiectasis cases are chronic and incurable. But I have trouble understanding how bronchiectasis and amyloidosis are related. I've had bronchiectasis for many years. But I know I don't have amyloidosis of any form. Besides, Gelsolin amyloidosis is mostly inherited and bronchiectasis is not.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@alleycatkate, You rock girlfriend for finding and posting that list!

Liked by alleycatkate

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@jkiemen

@tdrell I live near Milwaukee too and work in Milwaukee one day a week and other days in Lake Geneva. Can you tell me who your Pulmonologist is that yelled at you. I got yelled at when I went for a second opinion.. Just wondering if it is the same doc. There are 3 of us in the Milwaukee area now (that I know of)

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@jkiemen….the Pulmonologist who yelled at me for having the sleep study at NJH is a Dr ALi…..part of the Aurora system .Aside from that horrendous reaction, I found him thorough and up to date….even called to tell me that MAC was found on the bronchoscopy he had done. Tdrell

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@ling123

@oldkarl All bronchiectasis cases are chronic and incurable. But I have trouble understanding how bronchiectasis and amyloidosis are related. I've had bronchiectasis for many years. But I know I don't have amyloidosis of any form. Besides, Gelsolin amyloidosis is mostly inherited and bronchiectasis is not.

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@ling123 Hi Ling. Correction, bronchiectasis can be inherited. According to my Mayo doc; mine is ideopathic which means unknown origin or inherited. Dr said mine was genetic form. But, who really knows….

Liked by ling123

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