Care for your family and friends and community. Mask up and do the best you can not to get nor give Covid-19 this season. The winter is dark but the sun will start returning to us soon. Like the seeds in the ground and the trees with no leaves, we can get through this dark season caring for each other.
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.
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.
I posted this in November, 2015. I am reposting it.
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.
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.
- 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.
- 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.
- 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?
Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/
Lovely email QUACK spam. TRY CBD OIL FOR FREE!
“The Miracle Molecule! Everything You Need To Know About the Health Benefits of CBD Oil“. The link implies that the article was in Reuters. I ain’t pressing no spam link. Internet search on Reuters Everything You Need to Know About the Health Benefits of CBD Oil does not bring up a Reuters article.
“All natural formula. All CBD products use proven, organic all natural ingredients that are toxin-free.”
Ok, now WAIT a minute. Proven? By what the hell method? We dropped some and got high so it’s good? And don’t get me started on toxin-free. Sure, and they’ll sell you a bridge too.
Let’s discuss all natural.
Is CBD oil “all natural”? Um. Well, it could be organically grown, I will give them that. There have been pesticide poisonings from illegal pot and the laws for growers vary state by state. Check your state laws re whether they have specified what the growers can use on the marijuana plants. Paraquat is very strongly implicated in Parkinson’s (https://pubmed.ncbi.nlm.nih.gov/20094060/) and you don’t want that, do you?
How do you define “all natural”? Innocent virgin farmer girls and boys, skipping through the pot plans and milking the oil out gently? Oh, ye innocent and foolish peoples. Here is a nice article about fires in CBD processing plants: https://www.sandiego.gov/sites/default/files/dsdfire-38-1.pdf. They burn real good, it turns out.
The National Fire Protection Agency (NFPA) has guidelines: https://www.firefighternation.com/prevention/nfpa-approves-420-standard-on-fire-protection-of-cannabis-growing-and-processing-facilities/. You do keep up with the NFPA, don’t you?
An older article illustrating the problem: https://www.politico.com/story/2019/02/18/marijuana-factories-explosions-safety-issues-1155850.
And the title of this seems pretty self explanatory: https://extraxx.com/the-top-five-safety-concerns-in-a-cannabis-extraction-facility/. “Let’s begin with the obvious. When dealing with flammable gasses or liquids in extract production, there is a risk of fire or explosion during the handling process. The easiest way to understand the risk of fire or explosion is to consider the fire triangle. Essentially, a fire needs three things to start: a fuel source, oxygen, and an ignition source. The basic philosophy here is that by removing legs from the fire triangle, we can make the process safer; by removing two legs, an operator can make their extraction process significantly less incident-prone.” Later in the article: “there are two tools that should be kept on site to make known the presence of unnoticed flammable vapors: a permanent LEL, or Lower Explosive Limit, monitor should be installed in the extraction room; and a handheld two or four gas portable monitor should be on site as well.”
I don’t have much experience with LFL monitors. Now I want to buy some of the gummies and try lighting them on fire. Does the smoke make one high? Well, I think it depends what it is suspended in. I thought vaping was insane when I read that some of the nicotine vapes suspended the product in antifreeze. Um, your dog may die if they drink it. Absorption in the lungs just does not seem wise. Also, some of the vapes get so hot that heavy metals get in the lungs. You know, lead and stuff. When I researched it last, China was turning out 500 different kinds of vape machines. Uh, ick, don’t do that. Sugar burns so the gummies might. I have some “Annie’s organic fruit gummies” so I can check whether they burn. Though they shouldn’t contain CBD oil. Now you know what I am doing while disabled. Home chemistry and on line research.
Time out word warning, in this poem. This poem is about discrimination. Substitute practically anything for werewolf…. disabled, bipolar, depressed, autistic, substance abuser. I am sick of discrimination. For human, substitute “normal”.
You know I’ve been a werewolf my whole life
Started in the womb
triggered by antibodies
And I am tired
of people telling me
I’m a werewolf.
Ok? I fucking know that.
I have known it since Kindergarten
where I arrived full of joy
ready to sing
and was shunned
we didn’t have a television
but I knew that wasn’t really it
I was different
I am different
and fuck you humans
different is ok.
I am a werewolf
and I am fucking proud
of all I have accomplished
in the teeth of humans hating me
and trying to shut me down
and shunning me
and reporting me
and doing everything short of shooting me
with real guns
I’ve been told to sit down
don’t read my writeups
don’t C! my work
don’t talk to me
stop making waves
and fuck you humans
because I am middle aged now
for a werewolf
and I am ready
to be one all the timee
damn the torpedoes
full speed ahead
fuck you humans
for how you’ve treated me
I’ve turned the other cheek
for sixty years