how to use a specialist

I am a rural Family Medicine doctor, board certified and board eligible. I have used the Telemedicine groups in the nearest big University Hospital since 2010.

Initially I started with the Addiction Telemedicine. I accidentally became the only physician in my county prescribing buprenorphine for opioid overuse in 2010. I panicked when I started getting calls. Dr. Merrill from UW had taught the course and gave me his pager number. I acquired 30 patients in three weeks, because the only other provider was suddenly unavailable. Dr. Merrill talked me through that 21 day trial by fire.

I think that I presented at least 20 patients to telemedicine the first year. The telemedicine took an hour and a half. First was a continuing medical education talk on some aspect of “overuse”, aka addiction, and then different doctors would present cases. We had to fill out a form and send it in. It had the gender and year of birth, but was not otherwise supposed to identify the person. TeleAddiction had a panel, consisting of Dr. Merrill (addiction), a psychiatrist, the moderator/pain doctor, and a physiatrist. Physiatrists are the doctor version of a physical therapist. They are the experts in trying to get people the best equipment and function after being blown up in the military or after a terrible car wreck or with multiple sclerosis. There would usually be a fifth guest specialist, often the presenter.

After a while, TeleAddiction got rolled into Telepain and changed days. They added other groups: one for psychiatry, one for HIV and one for hepatitis C. These can all overlap. I mostly attend TelePain and TelePsychiatry.

After a while, I pretty much know what the Telepain specialists are going to advise. So why would I present a patient at that point? Ah, good question. I use Telepain for the weight of authority. I would present a patient when the patient was refusing to follow my recommendations. I would present to Telepain, usually with a very good idea of what the recommendations would be. The team would each speak and fax me a hard copy. I would present this to the patient. Not one physician, and a rural primary care doctor, but five: I was backed up by four specialists. My patients still have a choice. They can negotiate and they always have the right to switch to another doctor. Some do, some don’t.

I am a specialist too. Family Practice is a specialty requiring a three year residency. The general practitioners used to go into practice after one year of internship. My residency was at OHSU in Portland, with rotations through multiple other specialties. We rotated through the high risk obstetrics group, alternating call with the obstetrics residents, which gave me excellent training for doing rural obstetrics and knowing when to call the high risk perinatologist. In my first job I was four hours by fixed wing from the nearest more comprehensive obstetrics, so we really had to think ahead. No helicopter, the distance was too far and over a 9000 foot pass, in all four directions. That was rather exciting as well.

what would YOU choose?

Here is a story of a choice about an abortion, a theraputic abortion, where a mother has to make a difficult choice. I have seen Family Medicine patients since 1991, so this will not identify a particular person. No HIPAA problem.

I see a new patient in clinic, a woman, who already has children. She has back pain. All is routine until she says, “Sometimes my leg goes numb from the knee down.” I stop. This is NOT normal. “Completely numb?” I say. “Not patchy?” “Yes.” “How often?” I ask. She shrugs. “Not very.” “If it happens again, call me and I want to see you right away.”

Why? This is unusual because most numbness follows dermatomes if it is from back pain. The dermatomes on the skin wrap from the back down the leg all the way to the toes. When someone describes numbness or the pain of shingles in that distribution, we know which nerve is affected. Numbness from the knee down can come from diabetes and other causes, but it is not on one side and it doesn’t come and go. So the unusual stands out for me.

“Anything else weird?”

“I had vision problems in my last pregnancy. They sent me to specialists, even a neuro opthamologist. He couldn’t find anything.”

“Ok.” I shrug. We move on.

She calls two days later. “Both legs are numb from the knee down.”

“Come in today,” I say.

Both legs ARE numb from the knee down. She also can’t lift her feet. The muscles from the knees down are weak. I get neurology on the phone. “MRI her from the top of her head to the base of her spine.” I call the hospital and set it up. That day.

She has seven brain lesions suspicious for multiple sclerosis. She did have an MRI in the previous pregnancy, which was negative. I do not remember how old the child was, 2-4 years or more when I saw mother.

I call her back in for results, we talk about specialists, and I call a neurologist in the nearest big city, three hours by car from where she lives. We start medications and my patient is scheduled.

She has multiple sclerosis. The flare improves. The visual symptoms were MS in the previous pregnancy, but it was not yet visible on brain MRI.

Then she gets pregnant again. Her symptoms immediately flare. She comes to me and I call the neurologist.

The symptoms are not a little worse. Much worse. “I suggest she terminate the pregnancy.”

My patient is horrified. Until the neurologist’s next words. “She needs to terminate if she wants to be able to walk for the children she has.”

My patient chooses an abortion, to terminate the pregnancy. Because she has a bad version of MS*, she remembers the symptoms in the last pregnancy, she is young, she is clearly progressing and she wants to take care of the children she already has.

What would YOU choose? For yourself, for your sister, for your wife. If you are male, do you have any right to make that choice? Now picture yourself pregnant with that choice. And thank you for reading this.

*Addendum: present evidence says that multiple sclerosis does NOT worsen with pregnancy. However, another illness, NMO (neuromyelitis optica) instead tends to become more active in pregnancy. It previously was lumped in with MS until the antibodies (anti-NMO) were identified and it was realized it’s a different subtype of demyelination disease, with its own treatment options. Medicine changes over time and the woman, the neurologist and I were working with the information available at that time.

abuse, enabler style

I am raised by a family of triangulating enablers and enablees.

The enablers are my mother and two uncles. They are very very smart. Let me qualify that: they are very very smart intellectually. Emotionally, not so much.

The two uncles have PhDs and are professors. They marry wives that are lessor in their view. One tells my mother that he wants a woman who is not as bright as he is. I don’t know if she is less bright, but she is a hella better athlete. I also have the impression that she had a time where she drank too much.

The other uncle marries a woman who tends to be a hypochondriac. He takes her to India, where she gets polio while pregnant. She is then a sick hypochondriac, which is very difficult. The ill can control their families by planning things and then getting sick at the last moment. On the other hand, chronic fatigue and fibromyalgia are very real and we are on the edge of figuring them out. That uncle divorces his wife and I instantly like both of them better. They stop being a weird unit and are suddenly individuals.

My mother tells me, when I am in college, “I wondered if your father was an alcoholic when I married him.” I want to hit her. She won’t leave him, she won’t stop enabling him, they scream at each other at 2 am often. Now I wonder about that and conclude that either screaming at someone was something she needed or she was an alchoholic too.

After my mother dies, I ask my uncle, what about his parents? After all, the three of them learned enabling somewhere and it pretty much has to be at home.

My uncle tells me his parents had a PERFECT marriage and that my grandmother LOVED being the wife of a physician and professor.

Um, so, then, why did she pay my tuition to medical school, uncle?

And I think about my mother’s stories. Once, she says, your Uncle Jim bet his friend Dick that Dick was too chicken to shoot a cigarette out of Jim’s mother’s mouth. Ooooo. With a rubber band shooter. Yes, my grandmother. Bob took the bet and succeeded. My grandmother roared with anger and the two boys ran like hell and hid.

And someone in the family tells me: your grandfather helped your grandmother control her temper.

There it is. The enabler/enablee.

The enablers die first. My grandfather of cancer at 79, my mother of cancer at 62. The cousins are all angry at me because I won’t follow the family rules and triangulate in a satisfactory manner, and I don’t care any more. I am ignoring them. I got my father’s banjo back and I am done. The two cousins I own land with jointly are not the worst triangulators.

I have to remind myself: for them, this is love. For some people, controlling or being controlled is what functions as love and intimacy. Fighting and tears when person A talks to person C about person B and person C then lets person B know, that is how they feel close. It is not only families, but communities. Clay Shirky’s description of a group being it’s own worst enemy describes the same patterns: identify an enemy inside or outside the group and then everyone comes together against the enemy. The enemy says the wrong thing, doesn’t worship the right god/desses, wears different clothes, looks different. And the group feels safer once the scapegoat has been killed, the guy has been burned. It would be nice if we could burn a ritual guy instead of torching each other.

The real anger is in the enabler. They control it by having the enablee express it. Then it is not “theirs”. They can feel superior to the enablee who is out of control. Sadly, the problem is only fixed temporarily and they will need their anger expressed again and again and again.

The cycle can be broken. It is a lot of work.

Blessings.

______________________________________________

Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.

Covid-19: long haul II

A few days ago my primary care doctor texts that she wonders if I have the autoimmune form of fibromyalgia.

Red alert. I have not heard about this.

I did a search last night and find this: https://www.sciencedaily.com/releases/2021/07/210701120703.htm.

Now, if you have been paying attention, you know that I was diagnosed with PANDAS in 2012, though Isuspect that it is really PANS. Both are autoimmune disorders. I also think that long haul covid is the same thing or something similar.

Meanwhile, they are now saying Covid-19 Long Haul may ALSO be an autoimmune disorder. Multiple sites below.

There is a paper in Nature that I don’t have access to, annoyingly enough. The fibromyalgia story in the above story is that they have spun antibodies down from human serum of affected and unaffected people and then injected them into mice. The mice get fibromyalgia symptoms from the affected antibodies but not from the unaffected ones. The symptoms in the mice go away when the antibodies fade out, in a few weeks. Aha.

The long haul story says that death from Covid-19 may be an autoimmune response, the antibodies going really nuts and making people bleed or their lungs close down. That is, swell shut. They have been drawing blood to study at different stages of Covid-19 and also checking autopsy patients. Usually autoimmune diseases are more prevalent in women then men but Covid-19 seems to be worse in men. This: “The mechanisms behind the production of such autoantibodies aren’t yet clear. Widespread and long-term inflammation during severe COVID-19 may cause the immune system to produce antibodies to pieces of the virus it wouldn’t normally recognize. Some of those pieces might resemble human proteins enough to trigger the production of autoantibodies.

Excessive inflammation could also boost production of autoantibodies that had previously only existed in the body at very low levels. Vaccination against COVID-19 is much less inflammatory than infection with the virus. In a separate study that looked at COVID vaccination, none of the healthy volunteers developed autoantibodies.” (2)(*)

Here is another fibromyalgia paper: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944. That paper lists the autoantibodies that they are finding in fibromyalgia including gangliosides. The fourth antibody in PANDAS/PANS is anti-lysoganglioside. Aha! So this is sparking a serious revolution in medicine: it is looking like many of the mysterious and difficult to describe and quantify diseases may be autoantibody disorders. The anti-ganglioside antibodies were found in 71% of fibromyalgia patients. There are seven antibodies listed, including one to serotonin. In PANS, they are blaming two anti-dopamine antibodies. None of the fibromyalgia patients had ALL seven, but all of them had some of them. A different pattern in every patient, because we all make different antibodies. Fascinating.

One more: https://pubmed.ncbi.nlm.nih.gov/28339361/. People with lupus are more likely to have fibromyalgia and visa versa. “Increasing evidence indicates that N-methyl-D-aspartate receptors (NMDARs) play a major role in the induction and maintenance of central sensitisation with chronic pain. In this study, we evaluated the role of anti-NMDAR antibodies in the development of FM in patients with SLE.” Lupus and fibromyalgia share an autoantibody. Holy cats. NMDA is ALSO a neurotransmitter. Makes me wonder quite a bit about “psychiatric” disorders.

Remember that we make up all the words. So the autoimmune diseases are usually found by testing for a few antibodies. In the most common autoimmune disorder, hypothyroidism, we usually check the TSH and T4 level, so patient hormone levels rather than antibody levels. Over the last 30 years, we are able to test for more antibodies. Systemic lupus erythematosis, celiac, rheumatoid arthritis, juvenile rheumatoid arthritis. When I was in medical school in 1989, the rheumatology book was an inch and a half thick and there were loads of different patterns of disease. I am sure it is twice as thick now. Our initial test for autoimmune disease is for inflammation: an antinuclear antibody and an erythrocyte sedimentation rate. Some people have rheumatoid arthritis but their RF is negative: they have “sero-negative” rheumatiod arthritis, which is more likely “a different autoantibody that we have not tracked down” rheumatoid arthritis. In chronic fatigue and fibromyalgia, the antinuclear antibody and erythrocyte sedimentation rate are usually normal. I suspect both disorders of being “post” inflammation.

My prediction is a serious medical revolution, where we start regularly testing for autoantibodies. Whether that will be something like a pregnancy test but with hundreds of autoantibodies tested for, or whether there are some key indicator ones that we can find, is not clear. At any rate, trauma, stress and infection all increase the likelihood of getting one of these disorders and we have to figure out how to lower the load of all three.

Do you think people are instinctively quitting their jobs?

I had a phone visit with my pulmonologist yesterday. She was running about 35 minutes late, I sat on Zoom until she showed up. She looks exhausted. “We have less doctors and more patients.” she says. “I was on call for the critical care unit last week and I am on call Monday and Tuesday.” “Please take care of yourself,” I say, “We really need you.” She is smiling the whole time. She is worried about me dropping weight and I am worried about her.

Prayers and blessings all around.


1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
3. https://thehill.com/policy/healthcare/591528-long-covid-study-author-explains-four-factors-that-can-predict-how-you-get
4. https://www.the-scientist.com/news-opinion/studies-identify-risk-factors-for-long-covid-69648
5. https://www.dailymail.co.uk/health/article-10436473/Is-people-sicker-Covid-19.html
*If that paragraph does not make people get the vaccine, they are living completely in a mad dream world, IMHO.
6. https://www.nih.gov/news-events/nih-research-matters/misdirected-antibodies-linked-severe-covid-19

For the Ragtag Daily Prompt: flickering. As in flickering hope.

Adverse Childhood Experiences 13: unsense

As a child in an alcoholic/addict household where you can not trust adults, who do you trust?

You either trust yourself or you buy in the alcohol story.

If you buy in, you have a high probability of either becoming an addict or marrying one, depending if you prefer the enabler or the enablee role.

If you trust yourself, you develop certain senses. You pay attention to people’s emotions. You pay attention to what people FEEL, what people DO and not what people SAY. You do not care what they say: what matters is what they do. My sister said she used to walk my parent’s house during high school and try to feel the mood. Did she need to hide?

The enabler role is trying to control the other person. There are amazing variations on this. I cared for a person whose sister would not take care of herself. Every time the sister is hospitalized, the person goes and cleans tons of garbage and rotted food from the apartment.

“Stop doing that,” I say, “You are enabling her. Call Adult Protective Services to go look at it instead.”

It can be very difficult to stop and can take years. People can change.

I have noticed that the enabler role is lethal. The enablers seem to die before the enablee. Certainly in my immediate family and with many patients too.

Enablee is the person controlled. Alcohol, drugs, gambling, anger, emotions. It is very very interesting to watch. I have read parts of my mother’s diaries. She was the enabler, with my father as the enablee. However, the diaries document them fighting in the middle of the night when he is drunk. And I remember high school, putting the pillow over my ears, because they were screaming at each other.

But wait. Why would she argue with her drunk husband? Why would anyone argue with a drunk person? You have to wait until they are sober.

And slowly I realize that my mother too was an alcoholic. I remember her drinking. Best cover for an alcoholic is a worse alcoholic, right? It’s fairly horrid. But it explains some stories and my food insecurity. They would not get up in the morning to feed me. My mother told stories of me trying to feed myself: cheerios and laundry soap. If my father was hung over, ok, but, why wouldn’t my mother get up? I think they were both hung over. That or else she really did not want a child. Especially a nine month old with opinions while she was trying to get over tuberculosis. She never got to hold me after birth until 9 months. And then I did not want her. I wanted her mother.

Trusting yourself, life can be a bit complicated. You sense the emotions others are hiding. Being a physician allows me to ask about the hidden things, very gently. Sometimes they come out right away. Sometimes it takes months. Sometimes years and sometimes never. My sister and I discussed going to parties and thinking, oh, that person is the child of an addict/alcoholic. This person is in pain. This person is quite happy but hiding stuff.

I told a counselor I do not know how to turn it off. She replies, “Why do you think I am a counselor?”

I don’t see auras. I feel things: like a cloud. Like a tiger, like a bear, like a whale, singing.

I think I will go with the whale.

Antibodies to tubulin

All right.

I am thinking about tubulin blocker antibodies. How would they work?

About 2 weeks ago, I had trouble walking down the stairs because my quadriceps just did not want to bend. In fact, all of my muscles felt awake and grumpy. As if I were Sleeping Beauty, now awake. Of course, if I was Sleeping Beauty and some jerk kissed me awake, I’d punch his lights out. Hands off!

Anyhow, I concluded that my tubulin antibodies had released. Was I better?

Well, no. It’s been weird. In me it’s the voluntary fast twitch muscles that don’t work when I have a PANS/PANDAS reaction, so they are back on line. The grumpy muscles are the slow twitch ones who essentially are screaming “WHERE HAVE YOU BEEN, I’VE BEEN DOING ALL YOUR WORK SINCE MARCH!” Nine months. The fast twitch muscles are weak, the slow twitch muscles don’t trust them and I am having trouble getting it all to work together.

My balance is fine. It just all hurts and is a bit unreliable.

I was in Michigan for Thanksgiving, staying with old friends. My oldest friend there is 80 and does not have wi-fi or any internet. That made doing any blogging quite a challenge and many thanks to everyone who pointed creative spelling. I would go to her son’s house daily and try to put up the work I’d done at her house. Not the way I usually do it and three kids distracting me, which I enjoyed.

It is bowling that makes me realize how weird my muscles are right now. I went bowling with the middle (15) and younger (11) child. Mom watching all of us. My role is Weird Aunt, more or less. I have bowled maybe 12 times in my life. I guttered the first three balls, a 9 pound orange beauty. My muscles all started screaming at me at once in my upper and middle back. Oh, I thought. So I slowed way down and tried to slow bowl. Next was a strike. I ended up bowling 100, which I guess is not so bad for someone who really has no idea what they are doing. My muscles were grumpy but slow was ok and I didn’t pull anything badly. Next morning I am quite stiff.

I am trying to figure out how to rehabilitate the muscles. Do I exercise? Slowly? It’s as if half a team has been missing for 9 months and is now back. The remaining team members are tired, pissed off, and have figured out how to work without them. They aren’t very pleased about relinquishing control and they don’t trust the part of the team that’s been missing. I would go to my doctor and ask to see a neurologist or ask for physical therapy, except that since PANS/PANDAS is barely believed in in children, there are only a few doctors that work with adults and other doctors seem to think they are quacks. One writes articles for Psychology Today. I’ve thought about contacting him, but he’s a psychiatrist. How much do psychiatrists know about muscles?

Let’s extrapolate this too, to the people with really bad chronic fatigue. Presumably they have antibodies to tubulin that affects more muscles, fast and slow twitch. No wonder they lie in bed. I would presume that they are hypoxic too, if they could walk, but they barely can. The Functional Medicine doctors are treating folks with hyperbaric oxygen and I think it might help with these muscles that don’t work and can’t move. It is sneaky. It’s not that the muscle can’t move at all, it isn’t paralyzed, it’s just that the exhaustion and fatigue that comes after moving it is terrible. The body says very very clearly : “DON’T DO THAT.” And we are still in the infancy of looking at antibodies, so we aren’t measuring them. I was going to say we can’t type them, but that’s not true. We are using monoclonal antibodies to treat cancer, so there are ways to isolate and type them. Medical science may explode with this and can’t you see the potential for misuse? Imagine an army affected by a tubulin blocker antibody, against an army with a tubulin augmenting antibody. Holy moly. It has the potential to be really really horrific, which is why I am putting all this up on everything2. Keep it in mind, ok? Nothing like making information public to prevent secrets from screwing us over.

And that’s the news from me. “Har det godt!” which is Danish for “Have it good!” or have a really good day.

Why care for addicts?

I posted this in November, 2015. I am reposting it.

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Why care for addicts?

Children. If we do addiction medicine and help and treat addicts, we are helping children and their parents and our elderly patients’ children. We are helping families, and that is why I chose Family Practice as my specialty.

Stop thinking of addiction as the evil person who chooses to buy drugs instead of paying their bills. Instead, think of it as a disease where the drug takes over. Essentially, we have trouble with addicts because they lie about using drugs. But I think of it as the drug takes over: when the addict is out of control, the drug has control. The drug is not just lying to the doctor, the spouse, the parents, the family, the police: the drug is lying to the patient too.

The drug says: just a little. You feel so sick. You will feel so much better. Just a tiny bit and you can stop then. No one will know. You are smart. You can do it. You have control. You can just use a tiny bit, just today and then you can stop. They say they are helping you, but they aren’t. Look how horrible you feel! And you need to get the shopping done and you can’t because you are so sick…. just a little. I won’t hurt you. I am your best friend.

I think of drug and alcohol addiction as a loss of boundaries and a loss of control. I treat opiate overuse patients and I explain: you are here to be treated because you have lost your boundaries with this drug. Therefore it is my job to help you rebuild those boundaries. We both know that if the drug takes control, it will lie. So I have to do urine drug tests and hold you to your appointments and refuse to alter MY boundaries to help keep you safe. If the drug is taking over, I will have you come for more frequent visits. You have to keep your part of the contract: going to AA, to NA, to your treatment group, giving urine specimens. These things rebuild your internal boundaries. Meanwhile you and I and drug treatment are the external boundaries. If that fails, I will offer to help you go to inpatient treatment. Some people refuse and go back to the drug. I feel sad but I hope that they will have another chance. Some people die from the drug and are lost.

Addiction is a family illness. The loved one is controlled by the drug and lies. The family WANTS to believe their loved one and often the family “enables” by helping the loved one cover up the illness. Telling the boss that the loved one is sick, procuring them alcohol or giving them their pills, telling the children and the grandparents that everything is ok. Everything is NOT ok and the children are frightened. One parent behaves horribly when they are high or drunk and the other parent is anxious, distracted, stressed and denies the problem. Or BOTH are using and imagine if you are a child in that. Terror and confusion.

Children from addiction homes are more likely to be addicts themselves or marry addicts. They have grown up in confusing lonely dysfunction and exactly how are they supposed to learn to act “normally” or to heal themselves? The parents may have covered well enough that the community tells them how wonderful their father was or how charming their mother was at the funeral. What does the adult child say to that, if they have memories of terror and horror? The children learn to numb the feelings in order to survive the household and they learn to keep their mouths shut: it’s safer. It is very hard to unlearn as an adult.

I have people with opiate overuse syndrome who come to see me with their children. I have drawings by children that have a doctor and a nurse and the words “heroes” underneath and “thank you”. I  have had a young pregnant patient thank me for doing a urine drug screen as routine early in pregnancy. “My friend used meth the whole pregnancy and they never checked,” she said, “Now her baby is messed up.”

Addiction medicine is complicated because we think people should tell the truth. But it is a disease precisely because it’s the loss of control and loss of boundaries that cause the lying. We should be angry at the drug, not the person: love the person and help them change their behavior. We need to stop stigmatizing and demeaning addiction and help people. For them, for their families, for their children and for ourselves.

adaptive theory of PANS/PANDAS

This is my working theory on PANS/PANDAS. Pediatric autoimmune neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with Strep A.

Four or more antibodies. The antibodies can take different patterns in different people.

  1. Antibodies to dopamine 1 and dopamine 2 receptors.

The antibodies are like keys fitting in a lock. The key may fit in the lock and BLOCK or fit in the lock and OPEN IT. So, there are a very large number of patterns that could arise from this, especially when we remember the rat neuron with 300 different receptors for serotonin in one neuron. Think of the possibilities here.

If this antibody BLOCKS, an ANTAGONIST, it will cause slowing/brain fog/depression/and I don’t know what all.

If this antibody is an AGONIST and the key turns, it apparently can cause mania, ADHD, OCD, oppositional defiance, clinginess, separation anxiety, anxiety, etc.

We do not know what causes psychiatric disorders. Now we have a category called neuropsychiatric, where it is caused by an antibody. Or antibodies. What percentage of psychiatric disorders are caused by this? I am betting high rather than low.

  1. Antibodies to tubulin.

If the antibody is an ANTAGONIST, blocking, then slow or fast twitch muscles won’t function correctly. It could block both. I think if it blocks both, that is the severe lie in bed chronic fatigue. I have trouble with my fast twitch muscles but my slow twitch ones work just fine.

If the antibody is an AGONIST, you get some super athletes. I know a number of people that I would suspect fall into this category. I can name five off the top of my head, friends.

  1. Antibodies to lysoganglioside.

This one worries me. Lysogangliosides lyse ganglions. These antibodies are used in soap making, among other things. They break down fatty cell walls.

When I have a high antibody level, I have trouble eating any carbohydrates. As I improve, I have trouble mostly with sucrose, fructose and gluten but not lactose. Also, when I eat gluten, I get acidic. When you get acidic, your body tries to compensate by slowing your breathing to hold on to CO2, because you need to balance the acid H+ with a base, OH-. So: triple whammy. Acidic I automatically breathe slower, which is not helpful when I am already hypoxic and tachycardic.

I have not figured out whether my antibody is an agonist or antagonist.

An agonist would lyse more ganglions. This could be bad for the brain and for peripheral nerves. Neuropathy and dementia.

An antagonist would stop ganglion lysing. Um, in theory, cancer. Lysogangliosides are supposed to clear out bad cells.My guess is that I have an antagonist because of the family history. At least, on my mother’s and sister’s side. My father smoked two packs of Camels for 55 years and did not get cancer: tough bugger, right? Or did he have an Agonist? This line of thinking makes me very highly motivated to eat in whatever way the antibodies want me to. I do not understand why gluten would trigger this and why the gluten effect in me lasts longer than the fructose and sucrose effect. Gluten intolerance and other gut problems are on the rise and this would certainly explain that. This is the cause of at least some fibromyalgia patterns. Not only does eating gluten screw up my breathing, but it makes any muscle that I have used recently hurt like hell. I ate some meatballs without reading the stupid package back in April. Two hours of chest wall muscle pain and honestly, heart pain. I dug the package out and duh: bread crumbs. Gol dang it, I hate it when I am stupid. However, it hurts like hell but at it’s worst I had normal cardiac enzymes and no heart attack. Weird.

Ok, but WAIT, you said ADAPTIVE. How can this nightmare be adaptive?

Sure, adaptive. Remember the back up system for when we are starving? We switch from metabolizing glucose to metabolizing protein and fats, our own if necessary. We go from glycogen metabolism to protein/fat metabolism which produces ketones.

This is the crisis shit hits the fan emotionally and in plagues system.

So, can be caused by stress or infection or a combination.

Why why why?

Because if the stress gets too high or the infection gets too bad, our body switches gears and runs a back up system. I’ve thought of chronic fatigue as some sort of switch the body throws for years, because it’s the hypercrazy work too hard workaholic Type A people who get it. Type B people do not get it or don’t notice or don’t care. Type B people just say, wow, I’m tired, I think I will rest. The Type A people flip out and say “Put me back like I was!!!!” and then they go to 47 doctors and refuse to do anything the doctors say and do internet research and see any kind of quack you can imagine and they are the most exhausting patients.

Why the psychiatric stuff? Ok, take mania. If there is plague or you are in a really dangerous abusive situation, mania suddenly makes sense. Overnight you are different and what’s more, it scares the hell out of everyone. You are shunned. You are alone. You may get thrown out of a job, family, friend group or all of the above. This would tend to protect you against both plague and the really dangerous abusive situation. Whether you like it or not.

And how clever of the brain/body. Here is a back up system. It changes at least four systems, so you are now a different person. You freak your employer, friends and family out. AND you are sick as shit and they won’t listen. You have to get out and go elsewhere for help or hide in your castle or house or whatever. You can’t move or you have super muscles. And every single person has a different pattern.

I look at the long haul covid. The most common symptoms are psychiatric, shortness of breath and fatigue. Sound familiar?

Now, will someone PLEASE fund my NIH west?

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Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/