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.

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.

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

Stress and the sympathetic nervous system

People talk about adrenal fatigue: what is it that they mean? And how can we address it?

When we are relaxed, or less stressed, we make more sex hormones and thyroid hormone.

When we are in a crisis, or more stressed, we make more adrenaline and cortisol.

The pain conference I went to at Swedish Hospital took this a step further. They said that chronic pain and PTSD patients are in a high sympathetic nervous system state. The sympathetic nervous system is the fight or flight state. It’s great for emergencies: increases heart rate, dilates air passages in the lungs, dilates pupils, reduces gut mobility, increases blood glucose, and tightens the fascia in the muscles so that you can fight or run. But…. what if you are in a sympathetic nervous system state all the time? Fatigue, decreased sex drive, insomnia and agitated or anxious. And remember the tightened fascia? Muscle pain.

When we are relaxed, the parasympathetic system is in charge. Digesting food, resting, sexual arousal, salivation, lacrimation, urination, and defecation. So saliva, tears, urine, and bowel movements, not to mention digesting food and interest in sex. And muscles relax.

If the sympathetic nervous system is in overdrive, how do we shut it off? I had an interesting conversation with a person with PTSD last week, where he said that he finds that all his muscles are tight when he is watching television. He can consciously relax them.

“Do they stay relaxed?” I asked.

“I don’t know.” he replies, “but my normal is the hyperalert state.”

“Maybe the hyperalert state, the sympathetic state, is what you are used to, rather than being your normal.”

He sat and stared at me. A different idea….

So HOW do we switch over from the sympathetic to the parasympathetic state?

Swedish taught a breathing technique.

Twenty minutes. Six breaths per minute, either 5 seconds in and 5 seconds out, or 6 in and 4 out. Your preference. And they said that after 15 minutes, people switch from the sympathetic to the parasympathetic state.

Does this work for everyone? Is it always at 15 minutes? I don’t know yet. But now I am thinking hard about different ways to switch the sympathetic to parasympathetic.

Meditation.
Slow walking outside.
Rocking: a rocking chair or glider.
Breathing exercises.
Massage: but not for people who fear being touched. One study of a one hour massage showed cortisol dropping by 50% on average in blood levels. That is huge.
Playing: (one site says especially with children and animals. But it also says we are intelligently designed).
Yoga, tai chi, and chi kung.
Whatever relaxes YOU: knitting, singing, working on cars, carving, puttering, soduku, jigsaw puzzles, word searches, making bean pictures or macaroni pictures, coloring…..and I’ll bet the stupid pet photos and videos help too….

My patient took my diagrams and notes written on the exam table paper home. He is thinking about the parasympathetic state: about getting to know it and deliberately exploring it.

More ideas: http://www.wisebrain.org/ParasympatheticNS.pdf

I like this picture of Princess Mittens. She looks as if she has her head all turned around. Isn’t that how we get with too much sympathetic and not enough parasympathetic nervous system action?

does chronic pain kill you?

Another writer sent me this story, saying that chronic pain killed Prince, not an overdose.

http://www.rawstory.com/2016/05/prince-did-not-die-from-pain-pills-he-died-from-chronic-pain/

My response is complex.

1. Is chronic pain an “illness” in it’s own right?

My answer is yes and no. It’s complicated and our understanding is evolving. Right now I think of chronic pain as a switch in the brain that gets thrown. It can be thrown by adverse childhood experiences, by infection, by trauma or war or abuse, by too much stress… or a combination of any of these.

2. Why a switch in the brain?

In fibromyalgia patients we can’t find much on physical exam, except that the pain seems out of proportion to the exam. Ditto with chronic fatigue, reflex sympathetic dystrophy, TMJ, etc. However, now we can image the brain with a functional MRI and watch which parts are lighting up and how much. A study of “normal” and fibromyalgia patients involved a standardized pain stimulus: a thumbscrew. (Kinky, right?) The normal patients said the pain stimulus was 3-4 out of 10 and their brains lit up a certain amount. The fibromyalgia patients said the same pain stimulus was 7-8 out of 10 and the pain parts of the brain lit up MORE corresponding to their pain level. So they are not lying… and it IS in their heads. Sort of. We aren’t sure whether the muscle is yelling more than normal or whether the brain is hypersensitive or both. My guess would be both.

And I think this is an adaptation. It is to get us to rest, heal, calm down, introspect, stop being type A, etc. Boy, do we suck at it. Though recently I had a person in clinic who said what their body wanted to do was nothing. They just wanted to lie around. I said, well, ok, so when can you do that? They did, for two weeks, at the holidays. And my patient said, “One day I had a cup of tea and a book and the cat on my lap and the dog at my feet. I realized that my adrenaline system was turning off and I felt calm and relaxed. Healed.” Back at work the person cannot always maintain it but is getting better at it.

3. What does this have to do with Prince?

The problem is that for 20 years we treated chronic pain with opiates. Unfortunately on continuous opiates, the brain cells change in many people and “down-regulate” the opiate receptors. Less receptors, the pain rises. The person needs more opiate. The brain removes more receptors. So two myths: one that if you have chronic pain and take medicine as directed, you can’t get addicted. Only dependent. Since that is a myth, the DSM-V has combined addiction and dependence into one diagnosis: opioid overuse syndrome. It is a spectrum, not two separate responses.

The second myth is that if you give enough opioid, it will help the pain. Well, no. UW Pain and Addiction Clinic says that on average pain is reduced about 30% by opiods, whatever the dose. And high doses start causing some weird  hyperalgesias. I’ve weaned two people from over 100mg methadone daily down to 20-30mg. It took two years. They felt better on the lower dose after they got through withdrawal symptoms and a short term increase in the pain receptors complaining at them. And they are much less likely to overdose and die.

Page two here http://www.supportprop.org/wp-content/uploads/2014/01/PROP_OpioidPrescribing.pdf discusses current knowledge about opioids.

4. So like, Prince?

He may have died from a combination of fatigue and sedating drugs. If you get enough sedating drugs, then you stop breathing. Opioids are the biggest offenders combined with alcohol or sleep medicine like ambien or benzodiazepines like valium or ativan or alprazolam or muscle relaxants like methacarbomal or a combination of all of the above. I am a strict physician about urine drugs screens and I do the dip in clinic in front of the person. Way too often, the person does not tell me about the alprazolam or whatever until I am holding the dip over the cup…. and that’s when they tell me. They got it from the ER or a friend or two years ago or … took their dog’s. Really.

He may have died from influenza, if he had it, with sedating drugs. Bad influenza causes lung tissue swelling and can mess up your oxygenation. Your heart has to take up the slack and go faster. If you are trying to work and your heart rate is well above normal, it’s exhausting. It can kill you.

He may have died from overwork, another infection, sedating medicines…. but not directly from chronic pain. Chronic pain slows us but I do not think it kills us*. What kills us is trying to treat it with a pill instead of resting and doing gentle exercise and saying: What does my body want?

 

5. Overdose?

Also, are we talking about an accidental overdose? Are we talking about drug abuse? Are we talking about accidental death or suicide or do we as a society think that addiction deserves overdose death but a person taking medicine for chronic pain is a tragedy? Aren’t we a bit judgemental?

Prince may have taken a pain pill as directed but taken it with too many other controlled substances or with alcohol or while sick and exhausted. Overdose means too high a dose. If it was two percocets, alcohol, flu and xanax…. it could be an accidental poisoning.

6. Are you sure?

No. Medicine changes. Our understanding of the brain changes. Science is about change and deepening understanding. We are barely getting started on the brain and I would say that we are in preschool there.

 

 

*Stress alone can cause heart attacks and sudden death:    http://www.health.harvard.edu/blog/stress-cardiomyopathy-a-different-kind-of-heart-attack-201509038239

The photograph is from a week ago, part of my Maxfield Parish cloud series, zoomed way in to the mountains across the water.