Does anyone have any experience with liquid probiotics? What brands are cost effective and efficacious?

I almost clogged my peg tube the morning with ground up Lactobacillus in powder form

How is your immune system? In immune compromised individuals they could be dangerous, otherwise in healthy individuals they may be ok. Some doctors may recommend, some don't. The refrigerated types are best, check expiration dates. I forget how any millions, 5 sounds familiar, of active bacteria they should have.

http://ajcn.nutrition.org/content/83/6/1256.full

Immune system is good was able to hold pneumonia at bay for a 1 1/2 years. I'm 11 years out of treatment. I am also looking for liquid B12 since I have a serious deficiency

That's good! I'm not familiar with the liquid B12, but the tablet B12 is not effective, but I'm no expert. The sublingual is better than pill, the nasal spray, which is newer, is a prescription, and this and the injectable type may be best. I gave myself a few intramuscular injections, in the shoulder, when my B12 was deficient.

I remember the liquid B12 now. Was in a small bottle with an eye dropper, and would put it under my tongue prior to working out. Tasted like Ginseng.

http://www.nascobal.com/

With any vagus nerve issues, B12 deficiency is one symptom, as well as anemia. Most people with a vagotomy require injections for life. Trauma, fibrosis, etc., to the vagus can also contribute to B12 deficiency.

Thanks Ed,
So maybe its just more radiation damage and not MGUS (monoclonal gammopathy of undetermined significance). Am I wasting my money buying liquid B12? It can be administered sublingually as well.

Paul,
I was taking a sublingual tablet and it seemed to be working but I was aspirating the contents of the tablet. It colored the stuff I was hacking up from my lungs pink. Just like a toilet leak detection dye tablet ;-)

I don't think the digestive system will give you much usable B12.

B12 deficiency is common long term. It may bounce around but mine finally settled after 3 years. B1 I had to go with weekly injections for 4 weeks but it's been fine for a couple of years now. I believe the B1 deficiency that affects nerves the most caused issues with the vagus that ended up with a diagnosis of dysautonomia or completely out of whack autonomic nervous system. Much like what you're experiencing with the cardiovascular system I also experienced in almost every autonomic system in the body including heart rate, blood pressure, digestion, swallowing, breathing, hormone loops out of balance and even a large amount of muscle atrophy head to toe. I believe the muscle loss is from cardiovascular deficiencies.

I've been aspirating for quite some time also. All the increased secretions from the lungs trying to fix that has almost destroyed the lungs like advanced stage COPD. They wouldn't consider a feeding tube because my lung capacity was too low for surgery and my overall condition wasn't good enough back in the fall of 2012.

This all began back in about 2009 or 6 years out.

I was on oxygen for quite a while in the hospital but my blood oxygen levels returned to acceptable levels before I was discharged. They were going to discharge me with an oxygen bottle but changed their minds and cancelled it. Are you on a feeding tube now or can eat eat orally? I am getting swallowing therapy so next month we roll the dice and repeat the video fluoroscopy.

I am able to eat everything by mouth and just deal with the pneumonia. My oxygen fluctuates but because of long term lung gas exchange issues I avoid oxygen. I did spend most of 2012 on supplemental oxygen. My problems were more related to neuromuscular breathing issues with weakened breathing and swallowing muscles involved.

Gary/Uptown,
I am curious about your aspiration pneumonia experience as well as your reliance on supplemental oxygen. My Dad 5+ months out of his second round of chemo/radiation treatment for this beast he has been on oxygen for about the last 6 weeks when he was diagnosed with aspiration pneumonia. The doctor had original said he would be on it a month and is now saying he will be on it for the rest of his life?!?! We are so frustrated with doctors that seeing another just makes us nausea.........

Kim,
It all depends on his Sp02 numbers (blood oxygen saturation). If he is below 90%, he will require oxygen. When the pneumonia was clogging up my lungs, my Sp02 got down to 85%. After they got the pneumonia under control, and my lungs cleared out a bit, my Sp02 got back to 95-98%. Walking should help improve those numbers, at least it did for me.

My O2 sat was mid 80's but exercise kicked that up and even when it dips to 92% I can instantly get it up to 99-100. The key is exercise. I went from unable to walk to biking 25 miles twice a week and walking a couple of miles almost every day.

My FVC and MIP prevented me from getting a PEG even. I managed to get my FVC back from near 50% to 85% which out me back in the 30 year old range. I doubled my MIP which drastically helped with lung gas exchange. One of the tricky things with oxygen is the buildup of CO2 that is forced to the bottom of the lungs. If the pulmonoloigist doesn't understand the neuromuscular side of breathing, some things they suggest can make it worse. If they work with ALS patients, they understand what not to do.

My other problem is managing the buildup of lung and aerodigestive secretions. Just small amounts of mucus in the airway shuts down the body's ability to breathe. The ongoing pneumonia seems manageable for now.

Ed,
Are you doing any of the swallowing techniques to minimize aspiration? Have you been hospitalized for fevers?

I started using the iSwallow app about 18 months ago. I figured if I couldn't do one of the exercises it must be because of weak or atrophied muscles. The SLP just gave me two, hoping it would help the epiglottis lift properly and one to strengthen the front of the neck. I pretty much do the Mendelsohn often some stretching.

I have not been hospitalized with pneumonia since around 2003. I started intense breathing therapy about 2 years ago and nebulize about 4 times a day when the pneumonia gets bad. I alternate with a weak saline solution and N-Acetylcysteine. It clears out a lot of the gunk in the lungs which immediately improves oxygen levels and ability to breathe.

In January I agreed to let my family doctor X-Ray my chest to confirm the pneumonia more for his benefit. He confirmed the pneumonia but informed me I have a lot of air around my lungs from significant blockage like seen with advanced stage COPD.

Many of the swallowing techniques for helping aspiration pneumonia are only temporary strategies and don't really "fix" muscle issues. With epiglottis issues I found a very interesting exercise through a voice coach. It helps except when extreme cold fats move through.