Exhaustion/Sleepiness

I came up with a combination of Ursodiol (synthetic bear bile), Spironlactone (water pill), a probiotic regimen and only non-chlorinated water. My last lavage (5th) ended badly with only one lung cleaned so I went in my own direction I have cleaned the other lung without a whole lung lavage and now have stamina to exercise. my email is relkins48@gmail.com. I may have information that can help you

Did your doctor get all the drugs for you or did you do your own research. My doc hasn't talked about any drugs, just keep on getting them washed out. Thanks.

Have you ever had a sleep apnea test?

To Steve, I have been doing a ton of research over the last 7 years and had noticed PFT and ABG tests improvements while taking a prescription fibrate called gemfibrozil for high triglyceride levels between January 2016 and October 2016. However I gained a lot of weight (40lbs) and likely contributed to the formation of stones in my biliary duct which shut down my liver in June of 2017.

Interestingly, I brought up the improvements in PFT and ABG tests with gemfibrozil at the RLDC in 2016 and opined that my PAP may be related to my five other dyslipidimias. This idea was dismissed in a conference of researchers, and I, blaming the 40 lbs of excess weight on the prescribed drug gemfibrozil, quit taking it.

My PAP lipids came back very quickly. MY PFT tests and ABG tests dropped dramatically and I was deemed necessary for a lavage only two months after stopping the gemfibrozil. That lavage ended halfway through with only one lung cleaned because my heart stopped for 5 minutes after one lung was cleaned. In April of 2017 the new MRI in Cincinnati demonstrated one clean and one fatty lung.

June 1st of 2017 my liver failed from a bile duct blockage caused by a cholesterol stone.

I was told I need a new liver and new lungs, but was ineligible for both.

I was prescribed "ursodiol" or UDCA a bile acid that makes up 40% of a black bear's bile pool but only less than 1% in humans. It is a hydrophilic bile acid which is very important.

If you still have a gall bladder the gemfibrozil may help, but your doctor would need to follow you closely. If you don't have a gall bladder I would not take it.

You should look at your lipid profiles first to see if your PAP is concurrent with hypertriglycerimia, fatty liver, high LDL and low HDL. That seems to be the common denominator in all of my other issues.

In a retroactive look at my medical records I noticed the longest period between lavages (34 months) was while I had been taking statins after my first whole lung lavage. When I was not taking any lipid medications, each subsequent lavage was about a year apart.

The statins may have extended the period between lavages but I did not feel "good". Also I drank a lot of energy drinks with 'taurine' as an ingredient. Taurine is a necessary part of bile acid functioning. That may have also played a role.

After I was prescribed Ursodiol, I was laid up in the hospital for nine days and did investigated what it does. I remembered from my previous research a study that demonstrated how bile acids regulate lipids (gross simplification) through conjugation with taurine and glycine. This only happens in the proper stomach biome and provides many medical benefits and initiates many other functions necessary for proper lipid homeostasis and cellular functions.

I had been taking probiotics for the weight gain and stomach gasses, but added Greek yogurt, only non chlorinated water and kefir a pre/probiotic to ensure my gut biome was vigorous. I also asked for a prescription water pill to flush things through and alleviate the water weight I had been carrying. The probiotics also have other necessary digestive enzymes which may play a roll too.

I am now feeling healthier than ever on the inside inside. The damage from PAP to the rest of my body is still there, but the excess fat in my lungs, and blood are gone, I feel stronger than ever and have more stamina than I ever had. I do an hour every day on a treadmill, lift more weights and do yoga. My liver is performing too.

I do also use a CPAP machine for sleep apnea. If anybody shares my problems with bad cholesterol or are taking a statin and have been told they may have a fatty liver (60 million Americans do) consider talking to your pulmonologist in coordination with a liver specialist.

I have over a hundred studies pointing to the connection between the liver, lungs and bile acids. In my case the answer apparently lies there. I am willing to share them with you. Ironically, the GM-CSF autoantibodies are still in my blood at a reading of 49.

Good luck.

Robert Elkins

relkins48@gmail.com