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

<br><br><br><br><br>Hi Katherine, so glad you don't have thrush. So, geographic tongue <br>does not get treated?<br> <br><br>

<br><br><br><br><br>Terri, that is so interesting about the MAC being in drinking water and <br>then inhaled by GERD. I had never read that anywhere prior to this forum. You <br>have given me something to investigate (my favorite thing to do <br>anyway.   -Terri M.<br> <br><br>

Hi @windwalker, No essentially she said all you can do is deal with the pain .. she recommended Lidocaine .. but that requires a prescription. What I have been using works just fine: Kanka Soft Brush Tooth/Mouth Pain Gel from Amazon:
https://www.amazon.com/Blistex-Kanka-Professional-Strength-0-07-Ounce/dp/B001GCU0RE
I won't say it is perfect .. but for me I don't notice the pain but mostly at night .. if the pain gets too much I tend to kind of bite my tongue .. dumb I know but it gets my mind off it. But if I use the Kanka before I go to bed .. I can get to sleep .. if the pain wakes me up .. I just get up and use the Kanka again. It comes and goes .. I find acidic foods make it worse. I LOVE pineapple but had to give it up .. just have to watch what makes it worse. Small thing compared what other people are going through! I'll 'take my troubles"! Hugs! Katherine

Hi Katherine. Mary jo here. Weird but I just had graphic tongue about six months ago. That is how i got the Magic Mouthwash. Iin a couple of months it went away. I had a constant sore throat with mine and a really ugly tongue. I too thought it was thrush, but my regular doctor diagnosed the graphic tongue. He offered no explanation. Very interesting that we both had it. Maybe something to do with ABX.? Hope yours goes away quickly!

@maryjo2sell Hi Mary jo, for me I used the Mayo Magic Mouth Wash for over a year with zero results .. so was kind of relieved to find out it was NOT oral thrush for which the prescription was meant for. I have never had a sore throat .. but have fairly deep crevices around the edges when most painful. I plan to do a bi more research on Geographic Tongue .. seems to me I react to certain foods .. need to become more aware etc now that I have a diagnosis. Plus I have come to accept it could be a 3-4 year long thing .. and could reoccur .. that the doctors just don't know cause/treatment etc. Put my energy into what I can control .. and let go of what I can't control as the saying goes! I think you were bless to have it go away in a couple months!

Remind me again .. what is ABX? I have forgotten! Hugs! Katherine

Terri M....not sure which source besides Dr Huitt telling me it at NJH a few weeks ago. Perhaps in one of the taped Videos froM 2015 Or 2016....from National Jewish Health workshops.
Terri d

Hi Katherine. ABX is just a shortened way of writing antibiotics. Have a wonderful day. Mary jo

Heather, for me I had the GERD prior to being diagnosed with MAC .. COULD have been a contributing cause?? In my opinion I got GERD when I received 5 rounds of antibiotics and 3 rounds of steroids in 2001 (I was thinking it was 2003 but checked a record and it started 2001) .. so sick with pneumonia for 3 months. I think those drugs just ripped up my stomach at the time. I've been on various things ever since .. find Aciphex is the only one that works for me so I stick with it despite my Insurance company no covering it very well. Hugs to you! Katherine

Mary jo, you're just getting too smart for me! Thanks for the clarification! Hugs to you! Katherine

Dear All! 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @colapyrus .. Jan, @coylemel333 .. Melody, @cowboy1997, @dianelobosco .. Diane, @david1952 .. David, @del .. Del, @digmeme .. Linda, @donut .. Donna, @ehliny .. , @elaine .. Elaine, @flib .. Flib, @fransky, @georgette12 .. Gina, @jcarr .. @ginak .. Gina ,@gggolfs, GG, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @gaylejean .. Gayle, @jewel8888 .. Julie, @josephene .. Jo, @joanney .. joanney, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Mary jo, @marzz .. , @megan123, .. Jennifer, @melissa23 .. Melissa, @melrosedecosmo .. Rosie ,mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tessie .. Tessie, @tutti .. Lisa, @windwalker .. Terri, @worriedson .. Terry, and anyone else I forgot to make note of!

I have waiting to hear from Dr. Timothy Aksamit on an email I had sent him .. I KNOW just how busy he is but I knew I would get a definitive answer from him that we could trust on the issue of: should we invest in "whole house filtration" .. OR the expensive "0.2 micron filters shower heads" for my shower that I have to replace monthly .. Kleenpak™ Disposable Shower Head Filter. Below is the answer I received from him. Hope it helps you in your decision making. The deciding factor is "bio film" which is what he had told me front end when I had asked him. Hugs, Katherine
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

FILTERATION OF HOME WATER SYSTEMS
Hello Katherine,
Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09