Covid-19: Long Haul

https://www.bbc.com/news/av/world-us-canada-58918869 Some people with Long Haul Covid-19 are having to relearn how to walk and talk.

https://www.bbc.com/news/uk-england-leicestershire-59674203. Patients who were hospitalized are still affected at 5 months and one year after they are released from the hospital. Being female and obese are big risk factors. The article says “Long Covid has the potential to become highly prevalent as a new long-term condition.”

One more:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8146298/ ” While the precise definition of long COVID may be lacking, the most common symptoms reported in many studies are fatigue and dyspnoea that last for months after acute COVID-19. Other persistent symptoms may include cognitive and mental impairments, chest and joint pains, palpitations, myalgia, smell and taste dysfunctions, cough, headache, and gastrointestinal and cardiac issues.”
“One puzzling feature of long COVID is that it affects survivors of COVID-19 at all disease severity. Studies have discovered that long COVID affects even mild-to-moderate cases and younger adults who did not require respiratory support or hospital or intensive care. Patients who were no longer positive for SARS-CoV-2 and discharged from the hospital, as well as outpatients, can also develop long COVID [24,30,31,41,50]. More concerningly, long COVID also targets children, including those who had asymptomatic COVID-19, resulting in symptoms such as dyspnoea, fatigue, myalgia, cognitive impairments, headache, palpitations, and chest pain that last for at least 6 months [51–53].”

And the symptoms? “The most common ongoing symptoms were fatigue, muscle pain, physically slowing down, poor sleep and breathlessness.”

Yes, the same as mine.

My initial evaluation of Long Haul Covid-19 patients will cover three areas:

1. Behavioral Health. Are they having brain fog, feeling slowed, feeling like they can’t think? Is that what happened during the Covid-19 or did the opposite happen? Were they manic/ADHD/OCD etc? What happened in the weeks leading up to getting sick? Any major worries or life trauma? Lose a job, a relationship, someone in the family die? I am looking for a dopamine antibody pattern.

2. Musculoskeletal Chronic Fatigue. What muscles work and which muscles don’t work? If they need to lie in bed for 20 hours a day, both slow and fast twitch muscles are affected. If they are short of breath, they should have pulmonary function tests, including a loaded and unloaded walk test. Are their oxygen saturations dropping? They also need a sleep study. Check for sleep apnea. Any signs of ongoing infection with anything? Teeth, sinuses, ears, throat, lungs, stomach, lower gut, urinary, skin.

3. Musculoskeletal Fibromyalgia. WHEN do their muscles hurt? Is it after eating? Do they fall asleep after they eat or does their blood pressure drop after eating? What diet changes have they made? Are there things they have identified that they can’t eat? Gluten, lactose, meat, sucrose, fructose, nightshades, whatever. I am looking for antibodies to lysogangliosides.

Treatment:

High antibody levels can be lowered somewhat just with “lifestyle changes” aka no drugs.

A. Treat infection if present. Look for strep A with an ASO, since we have an occult one that is in the lungs, not the throat. For fungal infection, even just on the skin, lower blood sugar as much as tolerated. This may mean a ketotic diet.

B. Treat behavioral health with drugs if emergent. If suicidal or really losing it (meaning job/relationships/whatever), then drugs may be needed. But not forever. Avoid benzodiazepines. Check for addictions.

C. Lower antibody levels:
a. Lower stress. Many people will resist this. Counseling highly recommended, ‘cept they are all swamped. Have the person draw the three circles: a day in the present life, their ideal life and then what their body wants. Listen to the body.

b. You can sweat antibodies out: hot baths, hot shower, steam room, sauna, exercise. Daily in the morning, because cortisol rises when we get up, and so levels should be lowered.

c. Is there a stimulant that works for this person to calm them down? Or an antidepressant if they are slowed instead of sped up. The relatives of dopamine that work for ME are coffee caffeine and terbutaline. Ones that do NOT work for me include albuterol and tea caffeine. Ones that I have not tried include theophylline, that new relative of albuterol and ADHD meds like adderall. This will be individual to the person because we all make different antibodies. We are looking for a drug that displaces the dopamine antibodies. For people who are slowed or have brain fog, the stimulants may not work. I would try the SSRI antidepressants first, like sertraline and citalopram, unless the patient tells me they don’t work or make them anxious. I would screen for PTSD. For high PTSD scores and high ACE scores, I would use the old tricyclics, mirtazapine (which is NOT a benzodiazepine), wellbutrin or trazodone. Again, avoid benzodiazepines. Also check how much alcohol and marijuana are on board, because those are definitely going to make brain fog worse. The functional medicine people are treating mystery patients with hyperbaric oxygen chambers and I suspect that this works for the people with blocker tubulin antibodies.

d. Muscle pain/fibromyalgia symptoms. Avoid opioids, they will only work temporarily and may addict. Avoid muscle relaxants, they will only work temporarily. Again, the tricyclics may help. The newer antiseizure drugs that are indicated for fibromyalgia are possibilities, though as an “old” doctor I am conservative about “new” drugs. Gabapentin, pregabalin, and if the person is sped up, antiseizure medicines that are used for mania. GENTLE exercise. The line between me having a good day today and overdoing is knife thin. On the overdoing days I go to bed at 5 pm. I went to sleep at 5 pm yesterday and 6:30 last night. I sang for church last night and even though I’d driven myself there, one of the quartet offered to drive me home. “Do I look that grey?” I asked. “Yes.” he said. I turn grey from fatigue and it can be sudden. Right now it’s after my second meal. If I am active, I will fall asleep after lunch if I can. If I go really light on lunch, I crash right after dinner. And remember, I am one of the lucky people who only have fast twitch muscles affected, not fast and slow twitch.

I am adding this to yesterday’s Ragtag Daily Prompt: hopeful.

My end of life plan

My End of Life Plan and Wishes are as follows:

1. My plan is that my life should end after a half day of skiing for free at age 125 or older.
2. My wish is to ski quite brilliantly, smoothly and gracefully, though not as aggressively as at age 110 and below.
3. My plan is that other skiers will ask who that brilliant skier is and that all the lift operators will know.
4. My plan is that I will have a delicious lunch, with a glass of champagne, in a condo overlooking the slopes.
5. I plan to have a hot tub and then a massage from one of the many handsome men who flirt with me.
6. My plan is that I will sit in a comfortable leather armchair with my feet on a foot stool, while three of my male friends vie to be the one to bring me the second glass of champagne.
7. My wish is that I will not need any cosmetic surgery or false eyes or ears or teeth or joints or heart valves and will retain my spleen, teeth, gall bladder, appendix and brain in full operating order.
8. My plan is that I will not be on prescriptions, medicines, vitamins, supplements, medical foods, or nutraceuticals nor under the care of any quacks of any sort.
9. My wish is that my male flirts will all think that I am not a day over 75.
10. My wish is that I will be listening to live music, a woodwind quartet or string quartet, just dropped in to say hello, along with three of my great grandchildren, showing off their olympic ski medals, summa cum laude graduation documents, or Nobel prizes.
11. My plan is that after the quartet leaves, I will fall asleep….
12. ….and not wake up, and that though my attendants are sad, none of them throws themselves off the balcony over the cliff and are all surprised at my true age and at the bountiful gifts I have left to each of them with proof that a long life and compounded interest have excellent results. My children, grandchildren and great grandchildren will live long and prosper as well.

http://www.nutraceutical.com/
http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/MedicalFoods/ucm054048.htm

The photograph is from 2014.

Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

Pediatric autoimmune neuropsychiatric syndrome

Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.

This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.

My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets

1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.

2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.

3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.

How to fight this?

It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.

1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.

2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.

3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.

4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.

And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.

We will see if I make any headway at all.

___________________________________________

For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

What I learned from my first doctor job

When I started my first job, I had a nurse and a receptionist within a bigger clinic, all primary care. Fresh out of residency. One month in I asked to meet with my nurse and the receptionist.

The receptionist brought the office manager. I was surprised, but ok.

I started the meeting. “I am having trouble keeping up with 18-20 patients with fat charts that I have never seen before, but I think I am getting a little better at it. What sort of complaints are you hearing and how can we make it smoother?”

The office manager and the receptionist exchanged a look. Then the office manager excused herself.

Weird, I thought.

The three of us talked about the patients and the flow and me trying to keep up. About one third were Spanish speaking only and I needed my nurse to translate. That tended to gum things up a bit, because she could not be rooming another patient or giving a child vaccinations.

I thanked them both and the meeting broke up.

Later I found that the office manager had been brought in because another doctor tended to manage by yelling and throwing things. And another doctor had tantrums. So the receptionist was afraid of me and had asked the office manager to stay. The moment they realized that it was collaborative and I was asking for feedback and help, the receptionist was fine without the office manager.

That was an interesting lesson on working with people. I had been very collaborative with the nurses and unit secretaries in residency. As a chief resident, I told my Family Practice residents to treat the nurses and unit secretaries and in fact everyone, like gold. “They know more than you do and if you take care of them, they will save your ass!” The unit secretaries would go out of their way to call me in residency. “Mr. Smith is not getting that ultrasound today.”

“Shit. Why not? What the hell?” I would go roaring off to radiology to see what the hold up was.

The unit secretaries did not help the arrogant residents who treated them like dirt.

I thought it takes a team. I can’t do my work without the nurse, the pharmacist, the unit secretary, the laundry, the cafeteria workers, the administration. It takes the whole team. I value all of them.

Admitting diagnosis: old guy, don’t know

I wrote this in 2010, after I worked for three months at Madigan Army Hospital. I really enjoyed working there. It was the first time since residency that I had worked in a big hospital — 450 beds — and in a not rural setting. I kept asking to work with residents and eventually the Captain and I worked it out to both our satisfactions.

______________________________________

During my three months temp job at a nearby Army Hospital, I am asked to help the Family Medicine Inpatient Team (FMIT) whenever a faculty member is sick or out or deployed, which turns out to be fairly often. I enjoy this because I want to work with residents, Family Practice doctors in training. It is very interesting to be at a training program, watch the other faculty and work at a 400 bed hospital instead of my usual 25 bed one.

Two patients need to be admitted at the same time on our call day, so the second year resident takes one and I take the other. The report on mine is an 82 year old male veteran, coughing for three weeks, emergency room diagnosis is pneumonia.

The resident soon catches up with me because her person is too sick and gets diverted to the ICU. Mr. T, our gentleman, is a vague historian. He says that he has always coughed since he quit smoking 15 years ago and he can’t really describe his problem. He’d gotten up at 4:30 to walk around the assisted living; that is normal for him because he still does some o the maintenance. He had either felt bad then or after going back to sleep in a chair and waking at 10. “I didn’t feel good. I knew I shouldn’t drive.”

He’s had a heart attack in the past and heart bypass surgery. Records are vague. The radiologist reads the chest xrays essentially as, “Looks just like the one 3 months ago but we can’t guarantee that there isn’t a pneumonia or something in there.” He has a slightly elevated white blood cell count, no fever, and by then I do a Mini-mental status exam. He scores 22 out of 30. That could mean right on the edge of moderate dementia, or it could be delirium. I get his permission to call his wife.

“Oh, his memory has been bad since he spent a year in a chair telling them not to amputate his toes. And he was on antibiotics the whole time. He wasn’t the same after that. This morning he just said he didn’t feel right and that he shouldn’t drive.” So his wife called an ambulance.

The third year chief resident comes by and wants to know the admitting diagnosis. “Old guy, don’t know.” is my reply. “Either pneumonia or a urinary tract infection or a heart attack maybe with delirium or dementia or both.

The second year is helping me put in the computer orders, because I am terrible at it still. She could put them in upside down and asleep. “Why are we admitting him, anyhow? We can’t really find anything wrong, why not just send him home?”

“We can’t send him home because he can’t tell us what’s wrong. He might have an infection but he might not, and he has a really bad heart. If we send him home and he has a heart attack tonight, we would feel really bad. And he might die.”

I was getting a cold. I had planned to ask to work a half day but half the team was out sick so I just worked. But by morning I had no voice and felt awful. I call in sick.

At noon the phone rings. It is the second year. “You know Mr. T, who we admitted last night?”

“Yes,” I say.

“He had that heart attack during the night. Got taken to the cath lab. You made me look really good.” We had worked on the assumption that it could be early in a heart attack though the first labs and the ECG were negative. I had insisted on cardiac monitoring and repeating the enzymes. The resident had finished the note after I left and the night team had gotten the second and abnormal set of enzymes.

82 year olds are tricky. With some memory loss he couldn’t tell us much except that “I don’t feel right.” He was right not to drive and we were right to keep him in the hospital. And if it had all been normal in the morning, I still would not have felt bad about it. The residents are looking for a definitive diagnosis, but sometimes it’s “Old guy, don’t know,” until you do know.

No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

___________________________________

No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

outfits inappropriate for work

Ok, I have been going through my clothes. I found both the pink bra and the wings in the bottom of a closet. So, I put them on. I did not actually step outside the house wearing this. I think I need a costume party. Anyhow, it’s rather fun trying these silly things on. I’d have to wear the wings over my White Coat to doctor in this outfit…..

Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

USPSTF

USPSTF is the United States Preventative Services Task Force.

Here: https://www.uspreventiveservicestaskforce.org/.

This is a site I often use and frequently show to patients. For further reading….that is, if they want to know more about a topic. There is a nice two minute video about the Task Force right now, saying that it’s a volunteer organization that started 30 years ago, to review research about preventative care, agree on a recommendation and publish that recommendation.

Before they publish or update a recommendation, they ask for public comments and expert comments.

I have great respect for the USPSTF. Let’s take breast cancer screening. The current recommendation is here: https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/breast-cancer-screening1. There was a big furor when this came out, because the recommendation is for biennial mammograms. Every other year, not every year. The USPSTF went through reams of data and papers and said that they could discern no difference between yearly and every other year screens in normal risk patients. The screening recommendations are different for people with abnormal BRCA1 and BRCA2 genes.

So who yelled about that recommendation? Radiologists for one. Now, there is a financial incentive on their part to have women get the mammograms yearly. The American Cancer Society was annoyed and the Susan B. Komen Foundation too. But the USPSTF stand their ground. The guidelines get updated in a 5-10 year cycle.

Reasons that I like the guidelines:

1. They are online. My patients can look at them too.
2. They make recommendations for screening by age groups.
3. They rate their recommendation: A, B or C level evidence or I for Insufficient Evidence.
4. You can read the fine print. They put the article with all the detail and all the references on the website. The weight of evidence is apparent.
5. They say “We don’t know.” when there is insufficient evidence.
6. The site is pretty easy to use.

I have to weigh evidence in medicine. A functional medicine “study” that is not a randomized double blind clinical trial and that only has 20 patients is really more of a case report. Hey, we tried this supplement and they liked it. The recent study about alcohol from Europe with 599,912 patients has a lot more weight. The Women’s Health Initiative had 28,000 women in the estrogen/progesterone arm, and 21,000 in the estrogen only/had a hysterectomy arm. Length of study, design, all of these are important.

There is a recent headline about a study saying that coronary calcium scores have now had one study where they were useful. That is a study. The guideline from the USPSTF is here: https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/cardiovascular-disease-screening-using-nontraditional-risk-assessment. The guideline says “insufficient evidence” and that’s what I tell patients who ask for it. I offer referral to a cardiologist to discuss it, but I am reluctant to do a test where I really don’t know what to do with the results. I pay very close attention to the guidelines and they are always changing. They have the strongest and least biased (by money and greed) evidence that I can find. And patients can read them too, which is wonderful.

Even though the USPSTF says that there is insufficient evidence for mammograms after age 75, we can still do them. That is, medicare will keep covering them. Some people keep doing them, some don’t. I discuss guidelines, but I will support the person continuing the care if that is what they want and they are informed. People are infinitely variable in their choices and logic.