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Sugzey$
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 Re:Grtitty sputum - 2009/11/09 02:15 By the way Edgewood96, didn't you use to be on the Healthboard forum?
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edgewood96
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 Re:Grtitty sputum - 2009/11/09 13:36 Sugzey$ I sure did. Who were you there? I got thrown off the healthboards the last time I was answering someone with MAC because I mentioned the words " other MAC forum" so they would possibly find the NTMinfo board to get more answers for their questions from other people who have MAC. Anyway, they blocked me from coming back. That just told me that the healthboards wasn't really interested in helping the people who are sick and need help and answers for their problems. I was grammy54 over on the healthboards.

I found the NTMinfo board in 2003 when I was diagnosed and of course there were very few people who posted then. I also found this board a few years ago too and I would post answers to peoples questions but it took a long time to get people to post on this board. I pushed a lot of people from the healthboards to the NTMinfo board. I have reconnected with some of the people. I have gotten to where I don't post too much anymore but I visit frequently.

I hate it that more and more people are being diagnosed with this horrible disease but there are more people on both boards now to help with answering the newly diagnosed patients questions.
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Sugzey$
User
 
 Re:Grtitty sputum - 2009/11/10 19:46 Hi,
I thought most everyone quit going to the Healthboards so I just quit getting on there until one day recently. I'm seeing that there is right much activity on there and it is real helpful to read what other people are doing for their MAC and bronchiectasis. I also saw someone who must have been kicked off has gone back under a new name....good for them. I was on there as Ann I guess and was using sugzey$ to sign in with the same as here. Hope you are feeling okay.
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edgewood96
User
 
 Re:Grtitty sputum - 2009/11/10 22:03 Sugzey$ were you the one that was in the first group of MAC posters in 2004 on the Healthboards? Didn't you and I and Peggy converse with each other a lot? Peggy is on these boards too now. We email each other privately now since we realized who we were.

I had my CT scan yesterday so I should find out this week from the doctor if my disease has progressed or stayed the same. I seem to be doing o.k. Just have my good days and bad days. I sure hope you are doing well too.
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Sugzey$
User
 
 Re:Grtitty sputum - 2009/11/12 02:48 Yes, I was on back then with you all. I have actually done pretty good since then. I haven't been back to the lung doctor in a couple of years. I was on antibiotics several times in the last 4 years for other things and that has probably kept me from getting infections in my lungs. However, the tendons in my left shoulder have been damaged and I am pretty sure is was the Levaquin that I have taken. I am using elastic bands every night to try to keep my shoulder from freezing up. Now, I will be afraid to take any more Levaquin and I thought at the time I was taking them that it was a good antibiotic. I also think the Whey Protein that I started taking has boosted my immune system and kept me from getting infections. I hope so anyway. That may be what triggered my excess acid I have in my stomach. I have silent acid reflux. I've been taking one generic Prilosec everyday but I think I'll start taking 2 since I read today that silent reflux might keep you from sleeping sound at night and I don't ever get a good night's sleep. Anyway, I hope your CT scan turns out okay. Take care.
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edgewood96
User
 
 Re:Grtitty sputum - 2009/11/12 03:19 Sugzey$ gosh it is so good to reconnect with you. Glad to know you have done well the last few years. I have terrible GERD too. I am on Nexium and Zantac.

I am so sorry to hear about your tendons. I am really scared of taking Levaquin & Cipro because of their side effects of damaging the tendons. Of course, all of these drugs have severe side effects. We are doomed if we don't take them and sometimes doomed if we do.
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atwitsend
User
 
 Re:Grtitty sputum - 2009/11/12 14:47 Taking an acid suppressor such as Prevacid or Prilosec will prevent your body from being able to absorb vitamin b-12. You can prevent a deficiency by getting sublingual under the tongue b-12 lozenges. I take the ones by Twinlab that are the Mega b-12 dots. Vitamin b-12 deficiency is horrible. You can get depressed and not be able to sleep and it eventually causes permanant nerve damage and dementia. I don't know why the doctors that prescribe those drugs for people with reflux don't warn their patients of this possibility. -Chris
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edgewood96
User
 
 Re:Grtitty sputum - 2009/11/12 15:45 Thanks Chris for the info. I agree with you that most doctors do not inform patients about drugs & their side effects. I always research my meds before proceeding with taking them. I have been taking total Vitamin B for years so hopefully this is helping me not get a vitamin deficiency.

Unfortunately, I am one that cannot do without the proton pump inhibitors. I went through the Upper gastrointestinal endoscopy, Esophageal motility testing, along with the 24-hour esophageal pH test & my GERD was so bad that my doctor suggested the Nissen Fundoplication surgery which I flatly refused. I have tried natural forms of treating the GERD & have also tried to withdraw myself from the reflux drugs but to no avail. National Jewish docs told me I should take these drugs for the rest of my life to hopefully prevent me from refluxing in my lungs and causing more damage by possibly breathing in more MAC bacterias. Their theory was probably the start of my MAC diseases was because I had refluxed in my lungs and caused raw areas and therefore when I came into contact with the MAC bacterias I breathed them in and it started growing. But of course there is no true way of knowing how we came down with these MAC bacterias.

Oh by the way, the start of my reflux disease was taking the horrible drug Fosomax. When I started this drug it wrecked my esophagus and stomach. I have had problems since the first day of taking them. I took it for a year before I realized it was doing more harm than good. Kinda dumb of me I must admit.
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atwitsend
User
 
 Re:Grtitty sputum - 2009/11/12 17:05 My mother in law died of complications of a b-12 deficiency. Unfortunately you need the acid in your stomach to absorb the b-12 via the stomach or intestines. But if you use the sublingual under the tongue dots or a nasal b-12 spray you will be able to absorb it into your system. I'm very surprised that the NJ doctors don't inform people of this. Also, the acid suppressors only change the nature of the reflux they don't suppress it from coming up the esophagus. So I always try to watch my diet and I keep my bed elevated to try to keep reflux contents from getting into my lungs and I never lie down until three hours has passed since my last food. I would never want anyone to go through what my poor mother in law went through. By the time they diagnosed the deficiency she had permanant nerve damage in her feet and legs and she had dementia with hallucinations and constant diarrhea. It all could have been prevented with a b-12 dot under her tongue, b-12 nose spray, or a b-12 shot. Please forgive my concern over this issue. It became a deep personal upset for me that I don't want anyone else to ever have to go through or watch a family member or friend go through. -Chris
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edgewood96
User
 
 Re:Grtitty sputum - 2009/11/12 17:27 Chris, I appreciate your concern and knowledge about the B-12. I think it is wonderful that you are informing people and warning them of B-12 deficiency. I have an electric elevated bed. I watch my diet as well as not trying to lie down after eating and I try to eat very early at night. I have been dealing with the GERD issues since 2003. I have weaned myself off of the powerful proton inhibitors to one or two by day now.
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