Ketogenic Diet for PF
 

I am on the Ketogenic Diet for the purpose of minimizing C02 in my body. I have pulmonary fibrosis caused by formaldehyde gas exposure (in my home). This has been compounded by pulmonary hypertension due to scarring of the small blood vessels entering my lungs from the pulmonary artery. I must be on a very low carb diet in order to minimize C02 production since I cannot easily remove C02 from my lungs. I am not looking for support regarding the more common 'nutritional ketosis' as my nutritional program must be 80% fat, 18% protein and less than 10 grams of carbs. I do not are about weight loss....I only want to maintain the optimal quality of life available to me. I do need additional understanding of blood ketone.

I started on the SKD 8 years ago. After being on it for ~ 6 years, I decided to try upping my carbs (from < 15 to about 75) to see what would happen. The downhill change was so gradual (over a period of ~24 mos) that I did not realize they were related to the carb increase. However, after 2 years, the deterioration of my health made me determine to go back on the SKD. I have been on it now for 5 mos. Although my blood ketones are high (1.5-6.1), my urine ketones are also high. My energy is much improved as well as my breathing. However, I would love to be able to communicate with someone who is also on the SDK for health reasons.

Hi. I'm not here for the reasons you detailed, but i find the information you shared facinating. I had no idea that a lowcarb diet would minimize CO2 production in the body.

Welcome.

Hi, Suzette. :) Welcome! I wish you continued improvements with Low Carbing, and the best of health.

Liz,
The digestion of plant carbs produces huge amounts of C02 in the body which is normally removed via the lungs. The next largest source of C02 is created when the muscles burn glucose for energy. With Pulmonary Fibrosis, assuming one lives long enough (if the source of the problem is found and removed...which I did), the lungs gradually weaken due to the fibrosis (scarring). While the lungs can continue to expand, they have increasing difficulty contracting to the degree needed to release the C02. The only solution I could discover was to eliminate plant carbs and transition my muscles to oxidizing fat (or burning ketones) for energy. After about 6 years of success, I wanted to know if it really was the diet so I started eating ~75 grams of carbs daily. Very slowly....but steadily....I started having negative symptoms. Neither the cardiologist nor the pulmonologist could explain the cause of these symptoms. Finally, a perceptive internal medicine DO made an observation which I acted upon and went back to the ketogenic diet. All the negative symptoms vanished within 2 months! Now I am struggling to understand why, after 5 months of normal BG and high Blood ketones (4-6), my morning BG is jumping up! My urinary ketones are still at the low end of high (medium purple) so I am still burning stored fat but not losing weight. Any ideas?

:wave: Welcome Suzette,

Interesting. You will find a number of good threads on ketosis vs being fat-adapted forum ( a recent thread, http://forum.lowcarber.org/showthread.php?t=480286 ) and more on BG, esp. morning fasting levels, in the Diabetes sub-forum. http://forum.lowcarber.org/forumdisplay.php?f=45
A recent one http://forum.lowcarber.org/showthread.php?t=472078. And
https://blog.virtahealth.com/dawn-phenomenon/

What is the S in SKD? The Classic Keto is 90% Fat, and Modified Keto less fat but not that much protein. Five plan definitions: https://charliefoundation.org/diet-plans/. The Keto nutritionists listed on the Charlie website and also in Miriam Kalamian's book Keto for Cancer have experience with the Classic Keto Diet and rare diseases. The book, different disease, but same need for a version of high fat Keto and tight control of the Glucose:Ketone ratio. http://forum.lowcarber.org/showthread.php?t=478439

You can also search this forum using Advanced Search. The regular box above is disabled, Advanced is below it.

All the best,

Hi and Welcome

Somewhere I read that a ketogenic diet raises the O2 level in the body. No explanation was given.

As for the recent changes in numbers, has anything else changed: meds, sleeping, exercise, stress, hormonal changes.....as you probably know many factors affect BG level.

Janet, The "S" in SKD refers to Standard Ketogenic Diet. I guess it is called "classic' now. Yes, on SKD, fat is 85-90% and carbs are less than 10 grams. When I initially went on this diet, I had to take my fat to 90%, my protein to 35 grams and my carbs to 5 grams in order to make the needed transition. This took about 12 weeks....probably due to my age. I was in my early 60's. (I am now 71.)

I just realized that the BG 'jump' could have been the pork skin cracklings. Although the package stated only 1 gram of carb for 1/2 oz., it did contain some maple syrup! I am giving away the other packages.

How interesting to read what you've written about a ketogenic diet helping to reduce CO2 levels!

My Dad had idiopathic pulmonary fibrosis...."idiopathic" because the doctors could never figure out what had caused it. I personally always suspect it was due to inhaling microdroplets of stomach acid because Dad had gastric reflux for a couple of years before he was diagnosed with IPF.

After Dad's lungs deteriorated to the point where he could no longer manage without assistance, he came to live closer to me. I suggested he go on a LCHF diet to lose some weight and control his Type2 diabetes without medication...which he did, although he never went as ketogentic as I would have liked.

I observed that his lung function definitely got a whole lot better almost immediately but I never put 2 and 2 together.

Before moving here, he had reached a point where he could no longer even hold a conversation because he was coughing and gasping for air 24 hrs per day. Afterwards the coughing went away almost 100 percent and he no longer gasped for air. In fact, he got to the point where he could actually go shopping, go to church and to other social functions and even go for short walks.

I always thought he was doing SO MUCH better because, with me handling many things for him, he wasn't nearly as stressed. Plus I figured the weight loss had helped because he had less fatty tissues getting in the way of him breathing. His GERD also cleared up almost completely on the LCHF diet, which, I'm sure, didn't hurt.

My Dad passed away in January (at age 87) but he survived a full 10 years after being diagnosed with IPF. When he was first diagnosed, Dad was told that, at his age and in his condition, he would probably survive no more than 2 to 3 more years. From what you wrote, it sounds like he may have bought himself an extra 7 or 8 years by modifying his diet!

I have a cousin (early 60s) who also has pulmonary fibrosis. I'm going to share your information with him. Maybe he too can enjoy life a lot longer than the doctors currently think.

Thank you so much for writing!

Bevangel,

I was diagnosed with PF as the result of an open lung biopsy in 2003. At that time, I was given 6 months to live as my 02 diffusion was only 32%. 25% is a death sentence. My lung volume was only 40%. So much for formaldehyde being innocent! (My antibodies to formaldehyde were 350% above normal safe limits.) All this from installing new carpeting. After we found the cause and removed it, I was given 6 years to live as my 02 sat increased as well as my lung volume. However, both were still at only about 50% of normal.

I began my personal battle after the open lung biopsy. However, I did not understand the cause of death for people with PF until I needed to stop the car (when I was driving I suddenly needed to sleep). I stopped in the parking lot of a rehab place and went in to ask if I could lie down somewhere. When I explained the reason for my request, the owner came out and explained 'respiratory acidosis' to me. He also explained it came from the inability to adequately release C02 from the lungs. That's when I learned the real cause of death from PF...excessive C02 in the lungs (and brain). That was in 2005. It began my search for answers which I could not get from the MDs. I gradually began lowering my carbs...and improving. When I stumbled upon SKD (2007), I decided to join the group (parents of epileptic children.) These parents gave me the mail address of a nutritionist who worked with them. With this help, I began the old fashioned ketogenic diet. The biggest improvement came when I took my fat to 90% of my Total Caloric Intake, my protein down to 35 grams and my carbs to less than 10 grams. It took me 12 weeks to accomplish this. The results, however, were fantastic. After 6 months on the most extreme form, I graduated to the Modified Ketogenic Diet (80% fat, 60 grams of protein, 10-20 grams of carbs). I remained on this diet for about 6 years. Then I decided to increase my carbs to 75 grams...to see what would happen. Initially, all seemed fine. However, very gradually, problems surfaced....so slowly that it took me 2 years to put the increase in carbs with the problems (increased need for sleep during the day, lower 02 sat during sleep at night, etc.....all signs of respiratory acidosis!). I immediately returned to SKD. That was last December. I did not get the results I wanted until I went back to the original (90% fat, 35 grams of protein, <10 grams of carb) in early April. That is where I am now. However, I have a life again!

When I started in 2007, I did not have a blood ketone monitor. Now I use the Keto-mojo monitor. Also, I did not use flaxseed oil. Instead, I used olive oil.

Hope all this helps.

susette

What an amazing stroke of luck (or heavenly intervention) that you stopped your car where you did...and that you walked in asking for a place to lie down. Most of us would just have leaned the car seat back and napped in the parking lot.

I know your doctors must be totally scratching their heads about just why you're still alive! Hopefully your pulmonologist is paying attention to what you're reporting re ketogentic diet effects... and at least trying to investigate. So glad you're doing well again and I look forward to you being around with us for many more years.

Thanks for the clarification.
Whatever the reason keeping protein to 35 g and carbs very low is working, congratulations for figuring out a treatment that works for you.