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…..
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.
The article about the three antibodies involved is in this section:
“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.
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 is the United States Preventative Services Task Force.
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.
“Please write something from a medical perspective about anxious people who worry every little thing is some serious disease.” — reQuest 2018
This is quite a brilliant and timely question.
The DSM V was published on May 18, 2013. This is the Diagnostic and Statistical Manual of Mental Disorders version 5, and it redefines various disorders. For example, opiate dependence has disappeared and so has opiate addiction. Instead, there is one diagnosis: opiate overuse syndrome. Which really combines both opiate addiction and opiate dependence and makes it a spectrum.
The DSM V drops hypochondriasis. Wait, you say, that diagnosis no longer exists? Well, yes, correct. So the diagnoses are made up? Yes, as my daughter says, “All the words are made up.” So psychiatry changes and the diagnosis definitions change and some diagnoses disappear. Medicine is like the Oregon Dunes, really. The information is changing daily. I went into medicine thinking it is like a cookbook, where I just have to learn all the recipes. Nope, sand dunes: the wind and waves and new information change the contours daily. It drives my patients nuts. “My insurance won’t cover the medicine I’ve been on for 26 years.” Um, yeah, sorry, work for single payer and shut down the insurance companies, ok? “This combination of medicines has never killed me yet.” Um, yeah, sorry, but you are in fact getting older and we no longer think that combination is safe and first do no harm: I can’t prescribe combinations that I think may kill you.
Hypochondriasis has been replaced by two diagnoses: Somatic Symptom Disorder and Illness Anxiety Disorder.
“Patients with illness anxiety disorder may or may not have a medical condition but have heightened bodily sensations, are intensely anxious about the possibility of an undiagnosed illness, or devote excessive time and energy to health concerns, often obsessively researching them. Like people with somatic symptom disorder, they are not easily reassured. Illness anxiety disorder can cause considerable distress and life disruption, even at moderate levels.”
“To meet the criteria for somatic symptom disorder, patients must have one or more chronic somatic symptoms about which they are excessively concerned, preoccupied or fearful. These fears and behaviors cause significant distress and dysfunction, and although patients may make frequent use of health care services, they are rarely reassured and often feel their medical care has been inadequate.”
So, subtle difference. Broadly, the illness anxiety disorder people are sure they have SOMETHING and are worried about ALL THE SYMPTOMS. The somatic symptom disorder people are worried about A SPECIFIC SYMPTOM OR SYMPTOMS and WHY HAVEN’T YOU FIXED ME.
Some of the people complaining of weird symptoms do have a medical diagnosis that has not been sorted out. Take multiple sclerosis for example. The average time from the start of symptoms to diagnosis is 4-5 years.
Another one is sarcoidosis: https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358. It’s hard to diagnose, can affect different parts of the body, and it’s still pretty mysterious. Add to that list chronic fatigue, fibromyalgia, chronic pain, and numerous other diagnoses.
With multiple sclerosis, you may be thinking, well, if they had just done the brain MRI sooner, the diagnosis would be made. Not necessarily. I did find a patient with a bunch of MS brain lesions: made the diagnosis. She had had a brain MRI 3-5 years before because of suspicious symptoms during pregnancy. At that time her MRI was entirely normal.
The DSM V does not have a diagnosis called psychophysiological disorder. This is an ongoing discussion:
This site: http://www.stressillness.com/ is my current favorite about psychophysiological disorders. I heard a lecture from the physician who runs the site. He is at OHSU in Portland and gets the gastrointestinal patients where “they can’t find anything wrong” from all over the state. He is really good at this. He and I are in agreement: the symptoms are real. However, the symptoms may come from emotional suffering and from emotional trauma in the past and present.
It is clear that fibromyalgia is a “real” disorder: functional MRI of the brain shows the pain centers lighting up more with a standardized pain stimulus than “normal” patients. PTSD is “real”. It is interesting that there is more stigma surrounding fibromyalgia and chronic fatigue than PTSD: is that because the former two are more often diagnosed in women, and the latter is legitimate (finally) for male (and a smaller number of female) veterans?
And what do I, your humble country doctor, think? I think that chronic fatigue and PTSD and fibromyalgia and illness anxiety disorder and the others all may be variations of the same thing. Our body will handle and “store” or “stuff” emotions that we cannot handle or are not in a safe situation to handle it. Eventually our body decides that we are now safe enough and will notify us that we have to handle the emotions. Currently our culture is terribly unsupportive of this and there is huge stigma attached to dealing with it. We are all supposed to just be nice.
In the end, we can’t judge how a friend feels or whether they are well or not. We have to treat them with respect and kindness.
The photograph is me on my grandfather’s lap. He became a psychiatrist and I am a family physician. Taken in 1962 or 3. We are at cabins in Ontario, Canada. What a pair of grubs, but happy…..
In medical school I made a difference.
I was with two women and two men from class. We’d had a lecture on rape that day. One of the guys piped up, “If I were a woman and I was raped, I’d never tell anyone.”
“Man, I don’t feel that way.” I said, “I would have the legal evidence done, have the police on his ass so fast his head would spin and I would nail his hide to the wall.”
He looked at me in surprise. “Um, wow. Why?”
I took a deep breath and decided to answer. “You are assuming that you would be ashamed and that as a woman, it is somehow your fault if you were raped. I was abused by a neighbor at age 7. At age 7 I thought it was my fault. I thought I might be pregnant, because I was a bit clueless about puberty. I made it stop and tried to keep my sister away from the guy. When I went to the pediatrician the next time with my mother, I decided that since he didn’t say I was pregnant, I probably wasn’t. When I started school that year, second grade, I thought sadly that I was probably the only girl on the bus who wasn’t a virgin.
In college, I heard a radio show about rape victims, how they blame themselves, often think they did something to cause it, are often treated badly by the police or the emergency room, and feel guilty. All of the feelings that I had at age 7. I realized that I was 7, for Christ’s sake, I wasn’t an adult. It was NOT my fault.
If I walk down the street naked, I’m ok with being arrested for indecency, but rape is violence against me and no one has that right no matter WHAT is happening.
And child sexual abuse is one in four women.”
The two guys looked at the three of us. After a long pause, one of the other women shook her head no, and the other nodded yes.
The guy shook his head. “I never believed it. I didn’t think women could be okay after that.”
“Oh, we can survive and we can heal and thrive.”
We had the lecture on child sexual abuse a few months later. My fellow student talked to me later. “I thought about you and — during the lecture. I thought about it completely differently than before you talked about it. I would deal with a patient in a completely different way than I would have before. Thank you.”
previously posted on everything2.com in 2009
for the Daily Prompt: release
For the Daily Prompt: cringe.
I took this on the ridge on top of Mount Zion yesterday. Absolutely gorgeous hike, with the rhododendrons floating among the tall trees and tons of wild flowers. Here are little wild strawberries…. we will have to come back in September.
Cringe: I cringe when I hear the discussion on the news being about health INSURANCE and not health CARE. We need to change the focus.
We HAVE a mandate that anyone in the US can have health CARE. That is, the emergency room cannot legally turn anyone away. But the bills can bankrupt you and take your house away. Not only that, but the emergency room is the most expensive and worst way to take care of people in the world. The emergency room cannot treat cancer, cannot treat hypertension, cannot help a person with depression, cannot do the long term chronic care that I do. Per person in the US we pay twice as much as the next most expensive country and they have universal care. What is the matter with the citizens of the US? We care more for corporations protecting their profits than we do for our citizens health. And I think this will bring our country down….. we will collapse.
I am a physician but I also run my own clinic. I am a small business owner. And I really expect that health INSURANCE will force my clinic to close.
Call Congress. Say we want health CARE not health INSURANCE.
Mostly I post photographs from outdoors, but this is clinic Friday afternoon. Mordecai took off her feather boa, wig and headdress and came into the exam room to add to a visual discussion about the sacroiliac joints. Mordecai is a plastic skeleton and her sacroiliac joints are attached incorrectly but conveniently for the sellers. After all, her bones don’t have the weight of a real skeleton nor does she have tendons or muscles or skin to connect everything. She is sitting beside my Netter Atlas of Human Anatomy, which I use in clinic every day. To show the knee ligaments and menisci, to show the back muscles, to show the connections of the psoas muscle….
Many thanks to Dr. Netter’s brilliant paintings and also to Mordecai for their help!
On call for my patients, I get a call about flu.
The spouse sounds worried. I speak to the sick person.
“Do you have a fever?”
“Yes, 100.6. I am throwing up and I don’t want to eat.”
“Do you have muscle aches?”
“Not really. I know I need to drink water.”
“Are you coughing?”
“Not really. Not much.”
“Not very congested. Do you have diarrhea?”
“Yes, lots. And my stomach hurts when I eat.”
People often say “flu” meaning “stomach flu” which is not influenza. “Stomach flu” is gastroenteritis, another set of viruses entirely. It could be a bacterial food poisoning, but in 17 years in my rural town, I have seen a total of two food poisoning bacterial infections. Most here are viral.
“Is there blood in the diarrhea?”
Viral, then. Blood in the stool is more likely to be bacterial.
The important thing is to stay hydrated. If the person gets too dehydrated, they tend to just keep throwing up and may need iv fluids. To keep them out of the emergency room, I give the following recipe:
One quart of water
one teaspoon sugar
A pinch of salt
(with or without a pinch of baking soda)
If the person is quite nauseated, try drinking just a tablespoon every 15 minutes, with a timer. The electrolytes and sugar help the fluids absorb. Small amounts are easier to absorb and less likely to come up. If they keep throwing that up, go to the emergency room.
“I’m not eating.”
That’s ok. A day without eating won’t hurt you unless you are starting very underweight. Get the fluids in first and then you can go on to chicken soup and try some crackers.
Gatorade or flat ginger ale or pedialyte contain electrolytes too, but the home recipe is fine. And for small children, regular or pedialyte popsicles, because they can’t really drink them quickly.
Most people will recover on their own, especially if they stay hydrated. We don’t tend to try to stop the diarrhea, it’s better just to hydrate people to keep up. If someone is immunosupressed, on chemotherapy or with HIV or after a transplant, they may need hospitalization.
Does the picture look upside down? A bit nauseating or disorienting? I took it in Portland, and yes, it’s upside down.
Influenza is different from a cold virus and different from bacterial pneumonia, because it can cause lung tissue swelling.
Think of the lungs as having a certain amount of air space. Now, think of the walls between the air spaces getting swollen and inflamed: the air space can be cut in half. What is the result?
When the air space is cut down, in half or more, the heart has to work harder. The person may be ok when they are sitting at rest, but when they get up to walk, they cannot take a deeper breath. Their heart rate will rise to make up the difference, to try to get enough oxygen from the decreased lung space to give to the active muscles.
For example, I saw a person last week who had been sick for 5 days. No fever. Her heart rate at rest was 111. Normal is 60 to 100. Her oxygen level was fine at rest. She had also dropped 9 pounds since I had seen her last and she couldn’t afford that. I sent her to the emergency room and she was admitted, with influenza A.
I have seen more people since and taken two off work. Why? Their heart rate, the number of beats in one minute, was under 100 and their oxygen level was fine. But when I had them walk up and down a short hall three times, their heart rates jumped: to 110, 120. I put them off from work, to return in a week. If they rest, the lung swelling will have a chance to go down. If they return to work and activity, it’s like running a marathon all day, heart rate of 120. The lungs won’t heal and they are liable to get a bacterial infection or another viral infection and be hospitalized or die.
I had influenza in the early 2000s. My resting heart rate went from the 60s to 100. When I returned to clinic after a week, I felt like I was dying. I put the pulse ox on my finger. My heart rate standing was 130! I had seen my physician in the hospital that morning and he grabbed a prescription pad and wrote: GO TO BED! He said I was too sick to work and he was right. I went home. It took two months for the swelling to go down and I worried for a while that it never would. I dropped 10 pounds the first week I was sick and it stayed down for six months.
Since the problem in influenza is tissue swelling, albuterol doesn’t work. Albuterol relaxes bronchospasm, lung muscle spasms. Cough medicine doesn’t work either: there is not fluid to cough up. The lungs are like road rash, bruised, swollen, air spaces smaller. Steroids and prednisone don’t work. Antiviral flu medicine helps if you get it within the first 72 hours!
You can check your pulse at home. Count the number of beats in one minute. That is your heart rate. Then get up and walk until you are a little short of breath (or a lot) or your heart is going fast. Then count the rate again. If your heart rate is jumping 20-30 beats faster per minute or if it’s over 100, you need to rest until it is better. Hopefully it will only be a week, and not two months like me!
I am a rural family physician and my recommendation: before age 9. Before third grade.
WHY? Your eyes are popping out of your head in horror, but my recommendation comes from surveying my patients. For years.
The biggest drug killer is tobacco. However, it takes 30 years to kill people. It is very effective at taking twenty years off someone’s life, destroying their lungs, causing lung cancer, heart disease, mouth cancer, breast cancer, uterine cancer, stomach cancer, emphysema, heart disease….
I ask older smokers what age they started smoking. This is informal. This is not scientific. But most of my male older smokers say that they first tried cigarettes at age 9. I think parents need to be talking to their children about cigarettes by age 9.
And then start talking about alcohol and illegal drugs and the terrible dangers of pills.
“My innocent child would never….” Unfortunately my daughter said that as a senior in high school in our small town, there were 4-5 kids out of the 120+ that were not trying alcohol and marijuana. But there are kids trying far worse substances. We have methamphetamines here, and heroin, and pain pills sold on the street.
The perception that pills are safe is wrong too. Heroin is made from the opium poppy and it’s rather an expensive process, not to mention illegal and has to be imported from dangerous places. But teens take oxycodone and hydrocodone, bought on the street, to get high. And now drug sellers are making FAKE oxycodone and hydrocodone and selling that on the street. It contains fentanyl, which is much much stronger. If the dealer gets the mix wrong, the buyer can overdose and die.
Talk to your children young! NEVER take a pill from a friend, never take someone else’s medicine, never take a pill to party! YOU COULD DIE! And if you have a friend that is not making sense, that you can’t wake up, DON’T LEAVE THEM! Call an ambulance. Your friend may have used something illegal, and may not want you to call an ambulance. But if you think they are too sleepy….. don’t take a chance. People can get so sleepy, so sedated, that they stop breathing.
And parents, you are the ones that have to set a good example. Don’t drink alcohol every night. Don’t use pot every night. Take as few pills as possible. Pills aren’t necessarily safe because they are “supplements” or “natural” — hey, opium and heroin are plant based! Stop using tobacco and if you have a hard time doing it, tell your children you are struggling. It takes an average of eight tries to quit smoking. Get help.
Lastly, we talk about childhood innocence, but we let kids babysit at age 11. That is the Red Cross youngest age. My daughter took a babysitting course at age 11 and babysat. If we think they are responsible enough to do CPR, call 911 and do the heimlich maneuver, shouldn’t we also be talking to them about addictive substances by that age?
Talk to your children about addiction young… so that they can avoid it.
I am submitting this to the Daily Post Prompt: calm. I am not calm about this topic, but the photograph is calm…. and if we can help more children and families…..