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Jun 5, 2017 · Rifampin side effects in MAC & Bronchiectasis

HI, this is Linda Knox replying to you…..I am in Tucson all winter….We should meet and say hello .I am just getting ready to try to leave in July to go back to Youngstown Ohio for the summer…..Yo is about an hour from Cleveland…..I was diagnosed this winter also…..I write to this group under lindaknoxaz….Interesting to see another person from Tucson …….About Rifampin …….I have the orange urine but also have an orange tint to my stool……No one mentioned that before so I thought I should tell everyone that it is a possibility as well…..My ID doctor is T. Zangeneh from UA Banner group….Seems to be up on everything……Started me on each drug a week apart. This is my 3rd week on all the drugs 3 days a week. Not having anything too bad to complain about yet……Maybe it’s still early……I am also the one who is taking infusions monthly for IgG count that is low…….
Was wondering if anyone from the Cleveland area has a doctor that they like who is treating them in Cleveland???? I would like to have a name in case of an emergency while in YO…….if I actually really leave……It’s scary to think about leaving because everything is set here and when I leave for Yo……I will have different people and doc to deal with……Don’t really know what that means in the scheme of things…..
Wishing everyone good luck and sending prayers….
lindaknoxaz xoxo.

May 20, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

Hi, had a hard time finding this again….(.Az. is three hours earlier than the east coast now…).
.The infusions are done at the cancer center…….Everyone there is attached to an IV for whatever their problem is …..Chemo included…..My treatment lasts about 31/2 hours……It goes in the hand vein…..It’s not painful……They determine the amount by your weight……If you are small it takes longer……so for me it is longer…….I usually don’t have any side effects after…..maybe tired for a while….
They normal range is 694-1618mg/dl……I started around 250-300….I am now at 754…I have that reading after 5 sessions……They want me to be at 1000……If I get there they may stretch out the time….Now I do it every month……I don’t think you get to stop because you don’t make it yourself…..so ii will just go back to the low point…..back to square one!
I am just in the beginning of the antibiotics so do not know how everything is going to work out….I start the Rifampin Monday……and I am also on
coumadin which brings its own set of worries,,,,,,Has anyone else been on blood thinner while doing the therapy?????
Hope this clears up the infusion info…..
lindaaz

May 19, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

Hi, I am so sorry to hear that news…..I will be interested to see if your docs think the infusions will help……I saw my ID doc yesterday and he feels I still need them while in treatment……I did hear along the way that many people live a healthy life with low IgG and they only treat the condition if your immune system is not doing its job…..That happened for me last Sept…….I am now in the lower range of normal after 4 infusions…..I go the end of the month…..It takes a few hours and the amount goes by your weight……..
Hope you get the answers you need quickly……Waiting is the worst!
Thoughts are with you…
Lindaaz
xoxo
.

May 16, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

Hello Jen, I am new to the posts. I just signed up yesterday…..My name is Linda Knox, posting as lindaaz…..Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count……..something like 250 when the lowest is around 600……I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly……..It is suppose to help you fight infections…..
I haven’t had any new infections while doing this.and I feel better……more energy for sure…..but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions…….Just thought I’d mention it…..
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week….Pretty nervous…….
Hope this finds you doing well…..So happy to have found this site…..
Linda az

May 15, 2017 · Rifampin side effects in MAC & Bronchiectasis

Hello, my name is LInda. I am from Tucson, Az…..I just joined today ……My story is under the heading Getting started…I am on the same therapy, but I started the first pill last week. Now on to the second Ethambutol today. Next week I start the last… I take them 3 times a week….So far nothing too alarming but I haven’t had them all together yet…..This is scary stuff….. It helps to hear all the information on the site…..I was definitely not prepared for what I heard…..
Trying to stay positive….We are 3 hours earlier here……

May 15, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

Hello Fran. I just posted today…..I am new to the group so I can’t help too much….I just started the same regiment My doc had me start the first drug last week by itself…..Today I added the ethambutol today…..Watching and waiting…..Don’t feel like I have any symptoms yet……I have a feeling it will come….
Hope you are feeling better by now…..I see this post was from April…..
I think I am doing this right……
xoxo

May 15, 2017

Hello, my name is Linda……Just diagnosed with Mac/Bronchiectasis ..I have been sick for 8 months with the coughing, fevers, sweats etc….Had some relief from antibiotics along the way……..I was diagnosed after several sputum cultures although my doctors were saying this long before the final results were in……I had been diagnosed with COPD years ago but really never had much trouble…. Had the regular check up….with the appropriate texts and scans…….Since I was in Az for the winters everyone was always testing for Valley Fever, but it never came up positive….
I just started the 3 drug therapy……3 times a week……Started with the azithromycin last week..Adding the ethambutol to it today……Next week the last one….
Pretty nervous and scared about the whole thing. Working with doctors at the U of Az in Tucson who seem to be on top of things so confident about that.. Also on blood thinner for a DVT (leg clot) and taking IgG infusions once a month to help with infections….Some one asked in one of the posts I read abouIt help for other infections…..This is suppose to be very helpful…..People I have met while doing this were very up beat and said they did not get any other infections with this addition…..(immunoglobulin) Some were going longer between infusion….There’s a normal range and it depends how you feel also…..
So happy to have all of you to speak to…..it was so much help to hear the stories and get some information…..I am going to have to be more diligent about everything……
My best to everyone…….xoxo