Confusion in DEXAland

This a follow-up to two previous posts about my experiences with DEXA scans:
http://bit.ly/2BQlpEC
http://bit.ly/2YDvu2x

When I was in high school, my parents were friends with a couple called Bob and Marge. In old age Marge, a small, sweet-faced woman, developed catastrophic bone loss and was forced to wear a sort of metal cage to hold her body together. She was in constant pain and spent much of her time in bed.

Osteoporosis is a real and serious condition that can destroy your life if it gets out of hand. At this point, the only therapy accepted by the medical establishment is a group of drugs called bisphosphonates, which are not all that effective and should probably not be used long term because of an increasing risk of side effects such as fractures of the femur and osteonecrosis of the jaw. In order to avoid taking bisphosphonates, I have been using a program of impact exercises for the hip and spine, initially based on research by Dr. Larry Tucker at Brigham Young, as described in the previous two posts.

The decision to start bisphosphonate therapy should not be taken lightly. This is why it is so important for there be clear, consistent, and reliable data on the patient’s actual condition, both in the present and as time goes on. This year, as every year, after the DEXA had been completed, I asked the technician to print me a copy of the report from the machine. (Copies of pages from the 2019 and 2018 reports are included in this post.) I immediately noticed that my spine, which had been shown as osteoporotic since 2015, was now back in osteopenia territory; it had improved by one whole standard deviation within the past year.



The technician told me that this year’s report would look different from last year’s because this year the machine (modestly named the Lunar Prodigy Advance DXA System) had read L1-L4 instead of the L1-L2 it had looked at last year. I asked whether the change was an actual improvement or whether it was just a statistical artifact because the machine was looking at four vertebrae instead of two and she said it was an actual improvement. She also alerted me to the fact that the machine would now go back and change the numbers from all the spine readings of previous years so that the 2019 and 2018 reports would not match up. The hip readings for both years were about the same.

Looking at page 1 of each of the two, the 2018 report said that my spine was osteoporotic at 0.798 g/cm² whereas the 2019 report says that the 2018 reading was osteopenic at 0.931 g/cm². It also revises the WHO Classifications to show osteopenia for all past years, even though previous reports have shown osteoporosis in the spine since 2015. The % Change vs. Previous column shows no significant change in the past year!

How to make sense of this? It appears to me that machine is looking at two different dimensions of spine health and bringing them together, rather awkwardly, on page 1. This looks like poor scientific practice. What is really serious, though, is that it conceals the improvement in my spine from anyone to doesn’t actually look at the two reports side by side.

The radiologist probably didn’t do this. The linear structure of electronic health records means that the 2018 report was probably buried about fifteen screens down. Who has time to scroll through all that—and why bother when the report appears to be giving you the information you need already? A week later a nurse from my doctor’s office called to say that my doctor was recommending I take a bisphosphonate. I pointed out that my spine seemed to have improved and that my hip readings were stable. My guess is that the radiologist recommended the drug in order to be protected from liability and my own doctor, who probably didn’t have time to look at one report much less two, just took his or her word for it.

I still wanted to know what had prompted the Lunar Prodigy to look at two additional vertebrae so I emailed GE, the manufacturer. No response. I’m reserving judgment until next year about the big improvement in my spine but I do believe that the exercises are protecting my spine and hip bones at least as well as bisphosphonates would and without the added risks.

Maintaining Bone Density in My Spine with a Simple (but Time-Consuming) Exercise

In October of 2016 I wrote a post about jumping to retain bone mineral density (BMD) in my hipbones http://bit.ly/2BQlpEC. Jumping seemed to help my hipbones, though I had to increase from 15 minutes twice a day to 30 minutes twice a day to reach the point of “no significant change.” My hips were still osteopenic but the T-scores, comparing my BMD with a young adult, were mostly in the low 2s, whereas my spine was over 3.

Since impact exercise seemed to work for hips, I came up with the following impact exercise for the spine:

Sit on the floor with knees bent up, feet flat on the floor, hands flat on the floor a little behind your hips, fingertips pointing forward. Lift yourself onto your feet and hands, a bit like a reverse table in yoga. Then bring your hips down sharply to bump on the floor. It is important to keep your feet pulled in fairly close to the hips so that you land on your bottom, not your tailbone.

I started doing this exercise with a small clock in front of me, one bump every 30 seconds for 15 minutes twice a day. I now try to do 30 minutes twice a day, though I don’t always get there. I’m experimenting with doing more jumps and bumps per minute to see whether that makes any difference. It took more than a year for me to see improvement, but the last two DEXA reports (3/18 and 3/19) show “no significant change” for the spine as well the most of the hip readings. The T-score for my spine is now in the 2s.

I do these exercises while watching the PBS Newshour (the only news show I can tolerate) and old movies on TV. Two hours is a lot of time to spend and I realize that most people couldn’t or wouldn’t do this. On the other hand, I am post-menopausal. These exercises might work faster for younger people. What really needs to happen is for someone to build on the insights provided by this research, either by finding a way to intensify the exercises or by inventing a machine that would deliver impact to the hip and spine without harming the body.

Doctors continue to remind me that I am at increased risk for fracture and I’m sure that’s true, though I’ve never actually broken a bone in my life. They continue to recommend that I take bisphosphonates. Medical science has known for a long time that these drugs can have horrific side effects, particularly with long-term use (See this 2011 post from the University of British Columbia http://bit.ly/2YDEHrx.) The side effects are supposedly rare, yet I keep hearing stories about women who have experienced them. Perhaps they are not so much rare as under-reported.

People with advanced arthritis or similar disabling conditions will probably not be able to use impact exercises. For those who can, impact exercises offer an alternative to the uncertainties surrounding bisphosphonates.

The Moral Conundrum of Max the Cat

We gave him a comfortable home, improved health, food, toys, and love–but we took away what he valued most.

“Let’s see this prodigy!” I said to our handyman as he pulled the cat carrier out of his truck. He opened the cage and lifted out a tiny creature with round eyes and exquisite tiger and white markings. So we brought the kitten to our house and let him out to explore the back porch. Almost immediately there were piercing meows whose meaning was perfectly clear. “Where’s the farm? Where’s my family? I don’t like this!” Later it turned out that there were compensations: unlimited lactose-free milk, toys, soft pillows to sleep on, and lots of attention. It seemed OK for a while.

In an earlier post I recounted our first weeks with Max and Bella, the slightly older female kitten we adopted at about the same time. They got along well with each other and with our older cat Rowan. They played, learned new skills, and grew stronger. Years ago, we would have started letting them out at about this age. Our neighborhood was quieter then and our cats enjoyed exploring the yard and basking in the sun on the back porch. These days, it is simply too dangerous. There are more people and more cars. We even have birds of prey, possibly driven into town by the development of surrounding rural areas – owls, hawks and turkey vultures – that carry off small animals.

Like Rowan, Bella was content to be indoors, but for Max there was always something missing. In the morning about breakfast time, he would run around the house meowing, trying all the doors and windows. This would go on for about an hour. In the evening, the same routine for a slightly shorter time. He showed his contempt for our restrictions in other ways, like pulling a dish towel down on the floor and peeing on it.

Some people have suggested that Max might like a little fenced-in area outside, but I know better. What he wants is to be completely free. He comes from a long line of working cats and he wants to be doing the job he was destined for, killing stuff outdoors. As a barn cat, Max would have been exceptional. He is very smart; he recently taught himself to open the drawer under my bed. He loves challenges and risk-taking and isn’t afraid of anything. He gets up on top of the refrigerator and walks along the upstairs railing with ease. He is frustrated because his talents are being wasted; he has wound up in what is basically a spa for cats!

For a long time I tried to think of other options for Max – giving him to someone with a better yard for cats, even sending him back to the farm – but in some ways he is not well suited to be an outdoor cat. Though mighty in spirit, Max is not a large cat, only about ten pounds, and could be injured by a bigger animal. Max is also friendly and loves the company of other friendly cats and people. Outdoors, he would probably be lonely. He might even befriend a human passerby and get picked up as a stray. Max is also very fastidious and keeps himself clean at all times. When we first brought him home we got a damp paper towel and wiped off his tiny feet, which were dirty from being in the cat carrier. Once he understood what we were doing, he started purring.

As cats get older, they seem to develop a deeper attachment to the people and other cats they love. Max and Rowan take naps together. He and Bella chase each other around the house. Max is two-and-a-half now and the demands to go out are fewer and less intense. Nobody gets everything they want in life, not even cats.

An Alternative to Mohs Surgery for Basal Cell Carcinoma

Last summer I started to notice a spot on my nose. It looked a bit like a pimple but it didn’t go away. After a few weeks I went to a dermatologist and had a biopsy. Bad news: basal cell carcinoma, not the worst kind of skin cancer but not to be ignored. Doctors call BSC “the rat cancer” because it burrows under the skin, out of sight; there is no way to tell how much (or even where) it has spread.

The dermatologist told me that I should have Mohs surgery to remove the cancer. The procedure is for the surgeon to shave off skin a layer at a time, testing each layer as she goes, until a cancer-free layer is reached. There is no way to know ahead of time whether the surgeon will remove one layer or seven. In an area as delicate and contoured as the nose, a seven- layer procedure would leave a large wound that would take weeks or months to heal completely and might require plastic surgery. For me, that would mean canceling the annual scuba diving trip and possibly ending up with a permanent, unsightly mess at the end of my nose. Surely, I thought, there must be a better way.

And there is. It’s called superficial radiation therapy and it has become available within the last ten years. It is distinct from an earlier form of radiation therapy that was commonly used before the introduction of Mohs surgery, which became the standard treatment for BSC in the 1970s. SRT is not available everywhere and has advantages and disadvantages compared with Mohs. The experience of having an SRT treatment is similar to having a dental x-ray and takes about as long.

-  SRT is non-invasive, painless, and non-scarring. Like any surgery, Mohs causes bleeding, pain, and an unpredictable amount of scarring.

-  SRT requires 12-15 very short visits for treatment. Mohs surgery requires 2 visits, one of which may last all day. If there are unforeseen complications, further visits may be needed and, possibly, treatment by a plastic surgeon.

-  The cost of both types of treatment is about the same and both are covered by insurance.

-  The cure rate of Mohs is slightly higher, but both are above 90%.

-  SRT may increase the likelihood of getting cancer again, decades in the future. (If I’m around then, I expect that there will be much better forms of treatment available.)

For me, the good news was that SRT is available in Indiana. The bad news is that the best qualified facility is in Muncie, more than 2 hours from my house (more like 2.5, with road construction at both ends). But I did it anyway – 14 round trips between late September and early November of last year. The facility had an oncologist to determine the dosage but the actual treatments were done by a technician. At the time of the last few sessions I had some mild bleeding from my nose but that was the only discomfort. I’m so glad I did this!

 

More Reasons for the Eroding Trust between Patients and Physicians

I’ve just been reading an article by James F. Sweeney, “The Eroding Trust Between Patients and Physicians”, that appeared in the 4/10/2018 issue of Medical Economics. First, I appreciate the fact that Mr. (Dr.?) Sweeney is addressing this issue, which is a serious detriment to effective medical care. Lack of time and of any substantial relationship with the patient are the causes emphasized by Sweeney, but there are a number of others that deserve attention.

Standard of Care imposes constraints that encourage doctors to play it safe and avoid creative thinking. Especially in the field of oncology, the threat of liability intimidates many doctors and may cause them to see each new patient as a potential lawsuit. The treatments endorsed by Standard of Care sometimes reflect out-of-date science rather than the latest and best thinking in the field.

Reliance on randomized controlled trials (in addition to lack of time) means that patients tend to be treated by category. RCTs are useful as an overall indicator, but they don’t tell the physician anything at all about a particular patient.

Medical offices frequently don’t have accurate, long-term medical records for patients. With the advent of electronic records, decades of precious data on individual patients were discarded and lost. Unless the patient herself has kept hard copies, the doctor must make recommendations based on a couple of years of test results. Adding to this problem is the lack of compatibility among EMR systems.

The connection between medical practice and science is becoming more tenuous. Protocols for some tests are not followed correctly. (My favorite example is the taking of blood pressure, when medical offices don’t have you sit quietly for a few minutes beforehand, the correct protocol. Then they tell you that you have high blood pressure.) We hear confident statements that calcium supplements promote heart disease, when the evidence for this is shaky at best. Medical practice tends to cherry pick scientific studies and highlight those that support what it is already doing.

In spite of substantial scientific evidence supporting the role of diet and exercise to good health, many medical practitioners discount their importance. Ads for medical practices and hospitals featuring photos of overweight doctors and nurses are clear evidence of this attitude.

Current medical practice tends to reject, even scorn, any therapy that isn’t part of the conventional canon. After developing painful scar tissue in my shoulder and arms, I was successfully treated by a chiropractor with myofascial therapy (MRT) and active release technique (ART). Conventional medicine’s recommendation? Pain meds or surgery.

These are all features of medical practice today that are causing physicians to lose credibility in the eyes of their patients.

Foot Surgery the Easy Way

I was born with curly little toes on both feet. That never bothered me until the past year, when the left one decided to curl out a bit more and started rubbing against the insides of formerly comfortable shoes and boots. For a while, I babied it along with band aids and pads but finally it was time for a visit to my wonderful podiatrist Dr. Hoffman (introduced in Respect the Feet).

“What have you done this time?” he asked. I explained that I thought I was getting a bunion. Instead, he identified it as a type of hammer toe, a condition that is often treated by breaking the toe and inserting a wire; big incision, lots of pain, weeks of recovery time. Instead, Dr. H proposed a minimally invasive 10 minute procedure in which a tiny incision is made, the tendon is nicked, and the patient goes back to normal life immediately.

So I did that. The worst part of it was the shots to numb the foot. After that, I really felt no pain at all, either during the procedure or later. Dr. H offered an antibiotic and suggested an over the counter pain med, but I said “No, thanks” to both of those. The only real hassle was keeping the dressing dry for a few days, which meant showering with a towel and a plastic bag around my foot. Now I’m back to wearing my regular shoes and boots. Dr. Hoffman scores again!

Got IBS D? This Probiotic Yeast Could Be Your NBF.

In 2014 my doctor at the time ordered tests in an attempt to find the cause of my longtime gut problems (discussed in Trouble Down Below). The tests came back negative except for the observation that a few Blastocystis hominis (BH) organisms were seen. At some point later on, I mentioned this to a GI specialist and he said, “Oh, that’s nothing!”

In general, this seems to be true. In 2000, approximately 23% of the US population was infected with this protozoan, most with no symptoms at all. (In less developed countries, the percentage is much higher.) BH tends to run with IBS and with colorectal cancer but the relationship is not clear. For a few unlucky people, it can cause major digestive upsets lasting weeks or months.

During a trip last month I started to have diarrhea, acid reflux, and intermittent queasiness. Since I do sometimes have digestive upsets when I travel, I didn’t think much about it. When I got home, the other symptoms went away; the diarrhea got worse­­—many, many trips to the bathroom, often in the middle of the night. Before calling my nurse practitioner to see about ordering tests, I did some online research to see what treatments were likely to be. One word: antibiotics.

I’m not totally against these medications; if I have a life-threatening bacterial infection, an antibiotic is certainly what I want to be taking. In my present situation, though, I had reservations. Antibiotics don’t always work for bowel problems. They can also do long-term damage to the immune system by killing off good bacteria in the gut and they may have unpleasant side effects, like diarrhea and yeast infections.

I started looking around for other options and came upon a yeast called Saccharomyces boulardii (SB). This probiotic is a veritable Swiss Army knife of beneficial functions and has been studied for decades. It has repeatedly been shown to work well against diarrhea, sometimes as well as or better than antibiotics. SB is believed to be a strain of baker’s yeast (S. cerevisiae) and is completely safe and without side effects, except for people who are allergic to yeasts. SB can be combined with antibiotic treatment to help support bowel function; since it’s not a bacterium, antibiotics won’t kill it. SB has been shown in some studies to be effective against Candida albicans, ironic because they are both yeasts. There are also researchers who are looking at various uses of SB for cancer patients.

I started taking SB 250 mg. three times a day. The tests came back showing—you guessed it—Blatocysitis hominis! After a few days with not much change, I went online again and discovered a French study from 1996 about diarrhea in 30 people with AIDS (under Clinical Studies in PWAs). The subjects took 3000 mg of SB per day, six times the normal daily dose. After two days, they saw significant improvement, at eight days their bowel function was normal.

I started taking 3000 mg per day of SB and also saw significant improvement after two days. For me, it took about three weeks to get back to normal. I plan to continue at the same dose for another couple of weeks, then gradually reduce it. Given the possibility of an allergic reaction, I think it was just as well that I tried the lower dose first.

SB is sold under the brand name Florastor, $20 for 20 250 mg capsules, cheaper on Amazon and Ebay. CVS has a generic version that is sometimes on sale. Swanson, the online supplement store, sells its own version, $5.99 for a bottle of 30. Are they as good as the brand name, or better? I don’t know but I plan to experiment later on. Given my gut situation, I expect to be taking SB indefinitely, and happily too!