Rheumatic Fever

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Am I the only one who gets body aches/rheumatic fever no matter the sickness infected with?

My whole life I’ve always gotten terrible body aches and rheumatic fever when I come down sick with anything from strep throat to a head cold.

I thought every one else did too.

Now I’m learning that it’s quite uncommon in my peers.

I assume it’s because I have an autoimmune neuropathy.

Does anyone else with autoimmune neuropathy get this?

What about if you don’t have autoimmune disease, do you experience this?

#AutoimmuneDisease #AutoimmuneAutonomicNeuropathy

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Chasing Ghosts

#MentalHealth #PANSPANDAS #Anxiety #AutoimmuneEncephalitis #Genetics

Our son’s story of finally getting diagnosed with Pediatric Acute-onset Neuropsychiatric
Syndrome (PANS)

It was 2013 when I found myself at the local library thumbing through a book about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). I was scanning the pages for a solution on how to “fix” our son but nothing in this story sounded familiar. My husband told me I was chasing ghosts and maybe he was right. But I was still slipping into a yearlong obsession to find answers.
At the time, Chris was six years old and we had already weathered through a handful of disturbances. With little guidance from our pediatrician, all of Chris’s issues had been explained away. The night terrors, the constant infections and fevers since birth - all were “normal”. But it wasn’t normal to us - he was having two or three a night terrors a night and their effects were spilling into his daytime life; he was exhausted, anxious, and started panicking every time I left the house. We were eventually given the anxiety diagnosis and Chris started meeting with a child therapist to learn how to talk down to his “brain monsters” (if only it had been that easy). Our pediatrician also offered an anti-depressant and we declined. He was only six years old and none of this felt right. A final blow, the pediatrician asked the dreaded question, “Does anyone in the family have a history of mental illness?”. I found myself confessing that at the same age, I also had panic attacks and separation anxiety. I explained that it eventually went away, however, as an adult, it morphed into a generalized anxiety that would rear its head during times of high stress and interestingly, during times of illness. In that moment, after I confessed my little secret, Chris’s health issues seemed to be immediately filed under the “Apple doesn’t fall far from the tree” folder or at least that’s how it felt.
Through all of these appointments what was never discussed was Chris’s health history. His actual medical file, if anyone had bothered to look, was full of emergency room visits and hospitalizations. By three weeks old Chris spiked a 104 fever and was rushed to the hospital for a full septic work up. He was admitted for five days until the fever subsided. Bloodwork was inconclusive and we were sent home only to be readmitted four days later when another high fever spiked. No explanation from either hospital stay but now our nerves were rattled. In addition to the random high fevers, Chris’s first year of life was riddled with ear infections; ten in ten months to be exact, and two burst ear drums. By the time he turned three, the high fevers seemed normal to us. And then there was the Cervical Adenitis episode - an infected and inflamed lymph node in the neck. After a CT scan and another scheduled surgery, his lump was eventually drained under anesthesia and we were sent home with a three month supply of antibiotics and zero explanation of how or why this happened.
These medical events from Chris’s infancy and toddler years were never brought up during therapy sessions. And I wanted to know how these awful fevers and infections were related to his night terrors and his growing separation anxiety? These questions wouldn’t leave me and instinct finally started to kick in. I had to stop shying away from pushing the doctors because I was embarrassed about my own history with anxiety. So that’s how I ended up at the library surrounded by medical journals that I barely understood and stories of children with Obsessive Compulsive Disorder (OCD) that came on overnight.
Life marched along for us and we started chalking Chris’s anxieties to him just being “difficult” or “overtired”. However, after Chris’s 11 year old well visit, life as we knew it would be thrown off course for good. This visit included two booster vaccines (DTap and Meningitis) seven antigens at once. The appointment had been on a Friday and by Sunday night Chris was feverish and complaining of a headache. On Monday the school called, Chris was having a full-blown panic attack and I had to come get him right away. I took him straight to the pediatrician and after a quick eyeballing of his state (dark circles under his eyes and ghost white skin) and a glance at his file (you know the one) the pediatrician dismissed us with a “maybe he’s just afraid of shots” comment. This was the norm for us now. Any time I questioned the connection between Chris’s health and his anxiety I was told again and again that “anxiety just runs in families”.
Chris sat on the couch that afternoon and sobbed and sobbed.... for hours! I had never witnessed anything like this and that night he started having night terrors again and every night after that for the next month. The school mornings became torture; we had to scrape him off the floor and wrestle him into the car. This was a new hell for our family, the intermittent night terrors and separation anxiety was one thing to deal with, but this, this was sheer awfulness.
I started chasing ghosts again, but this time I saw them for what they really were; our genetics. With the help of a few selfless academics that took the time to answer my desperate emails I was pointed in the right direction. And that direction was 50 miles north in Boston. The day had finally come and we were seated in front of a doctor that specialized in PANDAS and PANS. He listened to me rattle off Chris’s symptoms, illnesses, lumps, fevers, the whole time he patiently took notes. I had been bracing for the mental illness confession but instead I found myself answering questions about my mother’s sisters that had rheumatic fever as children, my grandmother (their mother) that suffered from debilitating rheumatoid arthritis, and my own mother who had Polymyalgia rheumatica. It was becoming apparent how relevant it was that Autoimmune Disease ran on my side of the family. This doctor discussed with us that Chris most likely had a fever syndrome as an infant and toddler (random fevers and cervical adenitis were hallmarks of an autoinflammatory disorder called Periodic Fever, Aphthous Stomatitis,

Pharyngitis, Adenitis (PFAPA)). We walked away that day with a diagnosis of PANS. The next stop, tonsillectomy and antibiotics. The ghosts had spoken!
Chris had not inherited an anxiety disorder; he had inherited an immune system with a roadmap that had mistakes. Slowly, he started getting better. The night terrors disappeared and along with them, the day time anxieties.
For our son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near- constant state of infection and inflammation. Add in his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that our son has PANS/PANDAS.
Today we know the flares will come but we now have a plan. We have doctors to call for advice and treatment and we have a village of families just like ours that we can reach out to. Our hope is that all of this hell that Chris has been through has some purpose. I hope his story resonates with a parent out there searching for answers. It took our family 11 years to get Chris diagnosed and on the path to healing. I hope someone reads this and the time it takes to find help is cut in half. Please remember that the ghosts and secrets we carry with us are there for a reason. #Parenting #Gaslighting


Old arthritic diagnosed in Dec 1957

When my parents approved a biopsy from my year old ankle to differentiate between RA and rheumatic fever, they never explained what lay ahead of me. Not even in my teens when I had a synovectomy of my left knee just prior to senior year in high school did anyone say things would keep going down hill. Probably a good policy as a preschooler but not helpful as a nearly adult woman who saw few limits I. Her future. Hmmm. I don’t blame anyone because looking at possible future “me” might have been too depressing. Fortunately, my father was a street fighter in the sense that he ran away from home in 1925, lives with virtual strangers, and put himself through dental college with minimal help back in Chicago at Loyola Dental School. Even at age 82 he was still climbing onto his roof, albeit a ranch house, to clean gutters and whatever caught his fancy. Terrified my mom, the other rheumatoid arthritic in our tiny family. I have walked away from more physicians than I can recall, concluding that they were more clueless about m condition than I. I am currently searching for another rheumatologist who will write scripts for generic ultracet, a drug I have used for 20* years that is the best option to augment my Xeljanz, Celebrex, and assorted heart medications and antihistamines. Ohio, my current and probable final residence, has a lousy attitude toward low level opioids which is ridiculous in my case. I don’t abuse them. Don’t exceed dosage levels. Don’t request scripts far in advance, a real joke since our drug insurance enjoys sending refills a month or four in advance. I am a good patient. I’ve endured right and left hip replacements in 1986 and 88, an ankle alignment in 2000, bilateral knee replacements in 2006, a left hip revision that required a second surgery a week later when the tip of the new implant popped through the femur in 2011,, aright hip revision in2018, a second right hip revision in 2021…so many incisions and so much fun. I gave up ballet and toe shoes in 1970, piano in 1977, cycling in 1882, walking without a cane in 1887, the list goes on.
It is difficult to accept each physical loss. I still experience enter over the piano and ballet. Of course, using a Rollator now to protect myself from falling makes ballet a joke. I am lucky to walk upright since I have a propensity to fall at odd moments. Some of those stories are hysterical. I had five falls in two weeks after our move to Ohio and loosened screws in my right hip. Yes, just like the ones in my head EXCEPT that one was pressing on my iliac artery to add a bit of drama to that last right hip revision. Scares that surgeon a bit but came through just fine. My wrists barely bend abs my elbows abs shoulders ache to varying degrees daily from use as supplemental legs. Five years after that right ankle surgical fusion my left ankle voluntarily fused itself. So thoughtful to keep both feet at 90 degrees. The list goes on but so do I. I am determined …


#I would like to talk to any adult who has been diagnosed with Sydenhams Chorea. It's normally a childhood disease that is that follows Rheumatic feveR

Fever. I did have it as a child.


Losing a Sibling - My New Solo Journey Through Life

Losing a sibling young is an abomination of the natural order of the universe. Your siblings are, in theory, the only ones who know you your entire life. They share every childhood moment. They watch your children grow up. They help you survive a parent’s demise. At least this is how it’s supposed to be — in theory. Unless you lose your one and only sibling at a young age. Then you effectively become the only one who knows you your entire life.

This is my new solo journey now. My wingman, my partner in crime, my younger brother, was taken from me at the age of 27.

My brother was born the day before my 4th birthday, so I was convinced he was my birthday present. And when he came home, I was convinced he was mine, period. “Don’t touch my baby,” I’d say to anyone who dared to go near him. At night, after my parents went to sleep, I would steal him away and lay him in bed beside me.

And throughout his life, I continued to be the big sister with a vengeance. In my mind, I was his protector, his guardian angel, even when he didn’t really need one. We fought as normal siblings do, but we laughed more. We had that rare sibling relationship where we actually enjoyed spending time together. We were best friends, movie buddies, had the same sarcastic sense of humor.

#RheumaticFever, the doctors said. Irreparable heart damage. My brother spent his 18th birthday in the hospital, and was gifted with a 50/50 chance of living another five years prognosis. He defied them all by living another nine.

Grieving the loss of a sibling while they are still living is one of the most heartbreaking yet valuable lessons one can possibly learn. Knowing my brother was going to die sooner than later forced me to confront the notion of mortality, showed me you must seize every opportunity to live life to the fullest. But mostly it taught me the most valuable things in life are your loved ones, and you must never take them for granted — not for a single second. Because when they are gone forever, all you will have are your memories of your time together. And if you have any regrets at all about how you treated them or how little time you spent with them, they can haunt your soul.

The memories of my final years with my brother will forever burn brightly in technicolor. The trips we took, the birthdays we spent together, the afternoon we just randomly stopped and played a game of catch in the park. Leaving the hospital on the day he died, all I recall is the outside world looked grey, devoid of all traces of those vivid colors. Where had they all gone to?

That first year, I barely slept, rarely left the house, walked around clutching Joan Didion’s “The Year of Magical Thinking.” I was wading through knee-deep snow to place flowers on his grave for his birthday. What little sleep I did manage culminated in dreams about him that caused me to wake up bawling hysterically.

But one particular dream I had was beautiful and gave me much needed peace. In it, we were walking over a bridge together, looking out over a beautiful meadow. In the next instant, he was no longer beside me. I looked over to see him standing in the meadow, arms reaching overhead skyward. Was he trying to send me a message from heaven? Was he trying to tell me that it was OK to let him go?

#Grief completely consumes your life at first, but its almighty power over you gradually subsides. Over time, you are able to laugh again, to look through old photos with a smile instead of through a haze of tears. The color does return, but it will never be as vivid as before.

Someday, I will be the only surviving member of my birth family. My intimate childhood recollections will remain mine alone, as the only other person who shared them with me is missing from the story.

This is not the journey I chose, but I have to somehow make peace with it. Although my brother will no longer be accompanying me on this journey through life, I like to think there will always be a set of invisible footsteps walking beside me.


My Scariest Memory of being ill

It was as simple as going down memory lane.I was a sick child. I can’t tell you how many times I found myself raising my head from under the very starched hospital sheets.I was doing the usual things that 6 year olds do.I began to feel very sick.I began to feel extremely hot all over.I didn’t know what to do.I had no clue of what hallucinating was.I looked out of my small almond shaped eyes and couldn’t believe what I was seeing.I began to see snakes,many snakes crawling all over my bed.I began screaming and my voice echoed throughout the old farm house.I didn’t know what was happening.I ran into the other room and everyroom was another hallucinating experience.There in the other room stood a hunter with a fur hunting hat and rifle.Once again yelling like a scared child.I found myself running to my father.I recall being rushed to the local hospital.It was there I found out that my temperature was very high and hallucinating was inevitable.I found out I had #RheumaticFever.I would stay at the hospital for a while.I could never get these scary images out of my mind.Even while being treated at the hospital I was petrified.My sheets became my security blanket.I would cover my face from every thing that was moving.I developed Pneumonia,Double Pneumonia and would bring many illnesses in my adult life.My hear was scarred because of the Rheumatic Fever.I got my tonsils removed the following year.I was back in the hospital.It became a very scary place.I currently live with Pain now and have pain from Diabetic Nerve,#Lupus,RA, spondylitis.I have had many more hospital stays, surgeries,I’m not longer afraid.This one thing I can honestly say,The impression this hallucinating left on me is one that even today 40 years later,I’m scared and hope I will never hallucinate again.

Some things we can never forget and for me it was definitely the snakes.


Sore Throat Infections: Causes, Symptoms, and Cure

A sore throat or pharyngitis refers to the pain, itchiness, or irritation in the throat that generally gets worse when you swallow. The most frequent cause of a sore throat infection is a viral infection, for instance, a cold or the flu and it may usually resolve on its own. However, a sore throat can also be the first indication of more severe illnesses, so you should observe how it develops. Visit an urgent care doctor if your sore throat gets worse or persists longer than the usual.

What Does a Sore Throat Mean?

A sore throat infection can be the result of exposure to airborne contaminants, or it could be an indicator that a virus is targeting you. Sore throats often occur once an infection has had a chance to become established in your body. Sore throats and fevers usually go hand-in-hand and can indicate many different types of health issues.

What Causes a Sore Throat?

Sore throats or bacterial throat infection are often caused by bacteria or viruses that enter the body through the nasal passages or the mouth. A sore throat infection may be the result of an ear infection. As the ears drain, the mucus and fluids that flush the inner ear may irritate the throat causing it to be sore, red, and inflamed.

Can a Sore Throat Cause High Blood Pressure or a #Migraine?

A sore throat does not usually cause other health conditions like high blood pressure or migraines. They are, however, indicative that something is wrong within the body. Both high blood pressure and migraine headaches can be symptoms of other health conditions that are associated with sore throats and chest pain.

Are Sore Throats Contagious?

In most cases, a person is contagious for as long as they have a fever.

How Long Does a Sore Throat Last?

Sore throats will often last as long as the virus is attacking the body. A sore throat will generally stick around until your immune system gets the upper hand against the infection.

Can a Sore Throat Cause a Fever?

A sore throat doesn’t necessarily produce a fever but accompanies an illness as your body tries to eliminate the virus.

Why Does a Sore Throat Often Cause a Fever?

A fever is the body’s natural defense mechanism to fight infections by raising your body temperature. Most viruses won’t survive temperatures above 100 degrees and will get killed by the fever in short order.

When to See a Doctor in Case of a Sore Throat

Sore throats can be an indication of more severe illnesses like #RheumaticFever and malaria (if you have been exposed to it). Fevers are meant to be a short-term solution to fighting a virus. If you have a sore throat or fever that lasts longer than 72 hours, you may want to make an appointment with your doctor.

How to Cure Sore Throats

If your throat starts to hurt, you should drink plenty of fluids and get as much rest as you can. You can take over the counter pain medication to make your throat feel better. Talk to your doctor if you start to feel like you may have something worse than a cold or the flu. If you are experiencing sore throats that keep recurring, last longer than a week, and you get dehydrated, visit our urgent care center near you for a check-up and get relief from cold, cough, or throat pain.


Another diagnoses, another Specialist.

I’m in a waiting area at my local. Last year, when I had a mild  #Stroke. I was sent for a bubble echo. It was interesting to watch, but so painful. As any person who has a #ChronicPain condition knows, comfort is the most important thing. An examination bed for an hour does not remotely resemble comfort. Also the leur had already been in for 3 days, and it freaking hurt. I told the nurse, but she didn’t want to take it out and resite it. So now the Doc really has to work, to get the leur to do what he wants it to do. That was 10 months ago, and now I’m waiting to see a cardiologist. I’ve seen the nurse, and he did an EEG. “Please say it’s nothing, just send me off home” After an hour, she calls me in. she’s reviewed everything. It turns out, sometime during childhood, I had #RheumaticFever. My parents only took us to the GP if we were burnt, broken, bleeding or dying. A sore throat was none of those. So now, thanks to my parents, I can add a damaged Mitral Valve, to my ever growing list of medical conditions..

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