Instruction: Autoimmune CVID Question - Immunoglobulin Panel27F | 5'8 | Caucasian | USA | Autoimmune concern | No current med except otc Tylenol/Ibuprofen | No smoking/drug use | Very rare drink, only celebratory (weddings, birthday, etc) |To keep this as short as possible, I am experiencing general widespread aches and pains (I say my bones hurt a lot/heavy feeling legs), muscle weakness, joint pain, rashes, petechiae, easy bruising, itchy skin, swollen left axillary lymph node, gastro problems (diarrhea to constipation), chronic sinusitis and extreme fatigue. I have had these symptoms for the past two years or so, but my rash has spread onto my hands and the swollen lymph node will not go down - it doesn't hurt but I do notice it in my arm pit and it is visual when I raise my arm. I went to the doctor, since all my complaints were kind of general and vague she ran an ANA - positive 1:160, speckled. I was sent to Rheumatology, the Rheumatologist checked for Lupus, said I do not look like a typical Lupus pt and all my other Rheum bloodwork was normal (ESR CRP etc). He explained healthy people have positive ANAs. He did want me to go to Dermatology for the rash. He didn't think it looked like Lupus but did say it looked suspicious. He agreed that something was wrong with me as he believes skin is a big indicator in overall health. I went to my original doctor to get a referral to Dermatology - she decided to run an allergy panel and refer me at the same time so the Dermatologist would have everything in my chart they may need. Everything was completely normal, no allergies at all except my igE was at 3 which she flagged as low on my chart, even though the reference said 2.5 was low.After looking low igE up, I am not a doctor so I obviously do not understand a lot of the terminology, but from what I can gather it seems that people with autoimmune conditions usually have a low igE. Not that it is not necessarily a diagnosing factor for anything, but that the two usually go hand in hand *from what I can understand.*My question is: should I request a full immunoglobulin panel? Does having a low igE warrant that? I wanted to touch base with my doctor about the igE but did not want to ask her for an unnecessary bloodwork if igE doesn't correlate with an immunoglobulin panel - if that makes any sense? lol.I have read about CVID and would like to rule this out in my medical journey.Hopefully this all makes sense! Thank you for your time!!

Output: A low IgE might not warrant a full immunoglobulin panel on its own, but considering your symptoms and positive ANA, I would request one.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Autoimmune CVID Question - Immunoglobulin Panel27F | 5'8 | Caucasian | USA | Autoimmune concern | No current med except otc Tylenol/Ibuprofen | No smoking/drug use | Very rare drink, only celebratory (weddings, birthday, etc) |To keep this as short as possible, I am experiencing general widespread aches and pains (I say my bones hurt a lot/heavy feeling legs), muscle weakness, joint pain, rashes, petechiae, easy bruising, itchy skin, swollen left axillary lymph node, gastro problems (diarrhea to constipation), chronic sinusitis and extreme fatigue. I have had these symptoms for the past two years or so, but my rash has spread onto my hands and the swollen lymph node will not go down - it doesn't hurt but I do notice it in my arm pit and it is visual when I raise my arm. I went to the doctor, since all my complaints were kind of general and vague she ran an ANA - positive 1:160, speckled. I was sent to Rheumatology, the Rheumatologist checked for Lupus, said I do not look like a typical Lupus pt and all my other Rheum bloodwork was normal (ESR CRP etc). He explained healthy people have positive ANAs. He did want me to go to Dermatology for the rash. He didn't think it looked like Lupus but did say it looked suspicious. He agreed that something was wrong with me as he believes skin is a big indicator in overall health. I went to my original doctor to get a referral to Dermatology - she decided to run an allergy panel and refer me at the same time so the Dermatologist would have everything in my chart they may need. Everything was completely normal, no allergies at all except my igE was at 3 which she flagged as low on my chart, even though the reference said 2.5 was low.After looking low igE up, I am not a doctor so I obviously do not understand a lot of the terminology, but from what I can gather it seems that people with autoimmune conditions usually have a low igE. Not that it is not necessarily a diagnosing factor for anything, but that the two usually go hand in hand *from what I can understand.*My question is: should I request a full immunoglobulin panel? Does having a low igE warrant that? I wanted to touch base with my doctor about the igE but did not want to ask her for an unnecessary bloodwork if igE doesn't correlate with an immunoglobulin panel - if that makes any sense? lol.I have read about CVID and would like to rule this out in my medical journey.Hopefully this all makes sense! Thank you for your time!!. ### Response: A low IgE might not warrant a full immunoglobulin panel on its own, but considering your symptoms and positive ANA, I would request one..


Instruction: Rheumatology: a positive ANA then a negative one days later?Male/ 38 years old/ USAI had some tests done with my primary care doctor because I had generalized muscle aches, felt run, headaches and cracking joints for a few weeks on and off. I had blood work done and my CRP was 26, my ESR was normal, my rheumatoid factor was normal, my anti-CCP was normal, my ANA IFA was 1:80 positive. Speckled. , and my Lyme panel was normal.I saw a rheumatologist 4 days later who did a repeat of the blood work and those results just came back a little differently. The CRP went down to 15 and the ANA Multiplex Reflex 11 was negative. What do I make of this?

Output: ANA 1:80 is considered low positive. Some might say negative. Labs like this fluctuate frequently especially if not super positive like 1:320 and higher. And ANAs notoriously fluctuate based on blood storage, travel and lab technician. Its clear based on your CRP that you have inflammation going on. It takes time to garner a rheum diagnosis for most people because the picture isnt crystal clear at the first visit. See what your rheum has to say as the whole gamut of labs is needed for context.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Rheumatology: a positive ANA then a negative one days later?Male/ 38 years old/ USAI had some tests done with my primary care doctor because I had generalized muscle aches, felt run, headaches and cracking joints for a few weeks on and off. I had blood work done and my CRP was 26, my ESR was normal, my rheumatoid factor was normal, my anti-CCP was normal, my ANA IFA was 1:80 positive. Speckled. , and my Lyme panel was normal.I saw a rheumatologist 4 days later who did a repeat of the blood work and those results just came back a little differently. The CRP went down to 15 and the ANA Multiplex Reflex 11 was negative. What do I make of this?. ### Response: ANA 1:80 is considered low positive. Some might say negative. Labs like this fluctuate frequently especially if not super positive like 1:320 and higher. And ANAs notoriously fluctuate based on blood storage, travel and lab technician. Its clear based on your CRP that you have inflammation going on. It takes time to garner a rheum diagnosis for most people because the picture isnt crystal clear at the first visit. See what your rheum has to say as the whole gamut of labs is needed for context..


Instruction: Thank you doctor! My rheum called and said he thinks it could be a post viral syndrome, especially since I had Covid 3 months ago. Although I recovered fully, it knocked me out for 16 days. He said viruses or post viral syndrome would explain my High CRP, normal ESR and borderline ANA and cause Inflammation, and even low positive ANA titers. Does that sound right?

Output: Could be. COVID has been known to cause transient positive ANA. In addition, something like 20% of the general population has a false positive ANA up to 1:80 so we dont read much into it unless the titer is higher.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Thank you doctor! My rheum called and said he thinks it could be a post viral syndrome, especially since I had Covid 3 months ago. Although I recovered fully, it knocked me out for 16 days. He said viruses or post viral syndrome would explain my High CRP, normal ESR and borderline ANA and cause Inflammation, and even low positive ANA titers. Does that sound right?. ### Response: Could be. COVID has been known to cause transient positive ANA. In addition, something like 20% of the general population has a false positive ANA up to 1:80 so we dont read much into it unless the titer is higher..


Instruction: Could I please ask if the results would be higher or lower if there's was a lot of travel and storage involved. I got the test but the lab they sent it to was quite far away (a few hundred miles)

Output: Lower. When a sample travels it degrades in quality and some dont use the same ANA tests. Labs also run tests on different days. Usually ANA is M-F in most labs but some with lower volume may do M/W/F which means your sample may sit for a day or a weekend if you have labs drawn on Friday.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Could I please ask if the results would be higher or lower if there's was a lot of travel and storage involved. I got the test but the lab they sent it to was quite far away (a few hundred miles). ### Response: Lower. When a sample travels it degrades in quality and some dont use the same ANA tests. Labs also run tests on different days. Usually ANA is M-F in most labs but some with lower volume may do M/W/F which means your sample may sit for a day or a weekend if you have labs drawn on Friday..


Instruction: Doctors please help my little sister, she can't walk, I'm afraid she's going to die8F, 78lbs, no medication. She was in the hospital for a long time but they discharged her. She is still in pain, please help. I attached the notes of her discharge.The patient is an 8-year-old white female with five weeks of fever, rash, arthralgias. Last month, the patient noted foot pain involving both left and right feet, as well as a blotchy pink rash on the leg that proceeded to spread to the trunk and then arms and then face during that week. The patient had low-grade fevers with temps to a max of 101. This has progressed to the week prior to admission higher fevers with T-max of 103.5. The patient has endorsed muscle pain, particularly in the right leg and arm, and PMD had seen the patient this week noted right knee and right index finger swelling. There is no noted weight change over this time period. No noted diarrhea or swollen nodes. The rash the patient described the week prior had an acute abrupt onset and 5-10 minutes later would dissipate.Rheumatology was consulted on the patient from admission. Lab studies were sent to rule-out an infectious etiology for rash. Strep culture was negative. EKG was also performed to rule-out a prolonged PR interval. EKG was within normal limits. A DNase B antibody was 547 and an ASO titer was 300. While results were elevated, the patient did no meet clinical criteria for rheumatic fever and diagnosis that was most likely entertained was systemic JIA. Further lab work included an ANA which was negative, rheumatoid factor which was negative, a CRP on admission was 8.6 mg/dL with an ESR about 80. CK and aldolase were within normal limits. Ferritin was elevated at 663. LDH was within normal limits. CBC was reassuring with normal white counts, hemoglobin and platelets; findings nonsuggestive of leukemia. Hepatic panel within normal limits. A chest x-ray was done to rule-out mediastinal mass, and that was negative. From an infectious standpoint, Parvo, CMV, EBV were all negative. Clinically the patient was noted to have a salmon-colored transient rash that would come and go throughout the hospitalization lasting a matter of minutes. No definite arthritis on examination. Oncology was consulted given the history of arthritis and fevers. It was felt in the setting of normal cell lines in evaluating a smear, which revealed no blasts, no indication of hepatomegaly or splenomegaly and uric acid and LDH within normal limits and x-ray that was normal, they felt that further oncologic evaluation was not indicated and a bone marrow was not indicated at that time. Cardiology was also officially consulted because the patient had a 2/6 ejection murmur on the exam. Cardiology felt the murmur was a flow murmur and evaluated the EKG, which they read as within normal limits, and decided an echo was not indicated to rule-out valvular disease in the setting of the rash and arthritis in an attempt to workup acute rheumatic fever.

Output: Internal medicine doc here but in my differential is Adult Onset Stills Disease which can still present in children and Rocky Mountain Spotted Fever. The salmon colored rash lasting a few minutes is textbook for Adult Onset Stills Disease.I'm assuming she had blood cultures done at one or multiple points during her admission. Did she have a procalcitonin tested? Did she receive any antibiotics? Any steroids like solumedrol, prednisone etc? Does she still have joint pain? Does this rash show up only during febrile episodes? Any auto immune conditions in the family like lupus, rheumatoid arthritis, hashimotos?

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Doctors please help my little sister, she can't walk, I'm afraid she's going to die8F, 78lbs, no medication. She was in the hospital for a long time but they discharged her. She is still in pain, please help. I attached the notes of her discharge.The patient is an 8-year-old white female with five weeks of fever, rash, arthralgias. Last month, the patient noted foot pain involving both left and right feet, as well as a blotchy pink rash on the leg that proceeded to spread to the trunk and then arms and then face during that week. The patient had low-grade fevers with temps to a max of 101. This has progressed to the week prior to admission higher fevers with T-max of 103.5. The patient has endorsed muscle pain, particularly in the right leg and arm, and PMD had seen the patient this week noted right knee and right index finger swelling. There is no noted weight change over this time period. No noted diarrhea or swollen nodes. The rash the patient described the week prior had an acute abrupt onset and 5-10 minutes later would dissipate.Rheumatology was consulted on the patient from admission. Lab studies were sent to rule-out an infectious etiology for rash. Strep culture was negative. EKG was also performed to rule-out a prolonged PR interval. EKG was within normal limits. A DNase B antibody was 547 and an ASO titer was 300. While results were elevated, the patient did no meet clinical criteria for rheumatic fever and diagnosis that was most likely entertained was systemic JIA. Further lab work included an ANA which was negative, rheumatoid factor which was negative, a CRP on admission was 8.6 mg/dL with an ESR about 80. CK and aldolase were within normal limits. Ferritin was elevated at 663. LDH was within normal limits. CBC was reassuring with normal white counts, hemoglobin and platelets; findings nonsuggestive of leukemia. Hepatic panel within normal limits. A chest x-ray was done to rule-out mediastinal mass, and that was negative. From an infectious standpoint, Parvo, CMV, EBV were all negative. Clinically the patient was noted to have a salmon-colored transient rash that would come and go throughout the hospitalization lasting a matter of minutes. No definite arthritis on examination. Oncology was consulted given the history of arthritis and fevers. It was felt in the setting of normal cell lines in evaluating a smear, which revealed no blasts, no indication of hepatomegaly or splenomegaly and uric acid and LDH within normal limits and x-ray that was normal, they felt that further oncologic evaluation was not indicated and a bone marrow was not indicated at that time. Cardiology was also officially consulted because the patient had a 2/6 ejection murmur on the exam. Cardiology felt the murmur was a flow murmur and evaluated the EKG, which they read as within normal limits, and decided an echo was not indicated to rule-out valvular disease in the setting of the rash and arthritis in an attempt to workup acute rheumatic fever.. ### Response: Internal medicine doc here but in my differential is Adult Onset Stills Disease which can still present in children and Rocky Mountain Spotted Fever. The salmon colored rash lasting a few minutes is textbook for Adult Onset Stills Disease.I'm assuming she had blood cultures done at one or multiple points during her admission. Did she have a procalcitonin tested? Did she receive any antibiotics? Any steroids like solumedrol, prednisone etc? Does she still have joint pain? Does this rash show up only during febrile episodes? Any auto immune conditions in the family like lupus, rheumatoid arthritis, hashimotos?.


Instruction: NAD. My son has Adult onset stills disease, also considered SJIA when in a child under 16. His symptoms were rash (with fever) that could disappear when the fever went down. Muscle aches, joint pain. Enlarged spleen, liver. Elevated CRP, ESR, ASO, and Ferritin. Liver enzymes elevated from the swelling. He is on high dose prednisone and biologic injections. Hospitalized for 3 weeks.Its rare op, but your sisters case seems so similar. It needs aggressive treatment early on for the best chance of success/possible remission

Output: Yes, the evanescent nature of the rash in this context twigged me to Still's as well. There is a known juvenile onset form that falls under "SoJIA" (Systemic-onset Juvenile Idiopathic Arthritis), considered a version of Still's.OP, this sounds exactly like a form of arthritis to a clinician who takes care of children. I agree that what comes to mind for your mother as "arthritis" is likely too limited, and that definition might need to be expanded in her mind. Could you look at this, and maybe share it with her? https://www.arthritis.org/diseases/systemic-juvenile-idiopathic-arthritisAbout a third of the way down that page is the SYMPTOMS section, with subsections on Fever, Rash, and Joint Pain. Please read it and see if it rings a bell. Best wishes.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: NAD. My son has Adult onset stills disease, also considered SJIA when in a child under 16. His symptoms were rash (with fever) that could disappear when the fever went down. Muscle aches, joint pain. Enlarged spleen, liver. Elevated CRP, ESR, ASO, and Ferritin. Liver enzymes elevated from the swelling. He is on high dose prednisone and biologic injections. Hospitalized for 3 weeks.Its rare op, but your sisters case seems so similar. It needs aggressive treatment early on for the best chance of success/possible remission. ### Response: Yes, the evanescent nature of the rash in this context twigged me to Still's as well. There is a known juvenile onset form that falls under "SoJIA" (Systemic-onset Juvenile Idiopathic Arthritis), considered a version of Still's.OP, this sounds exactly like a form of arthritis to a clinician who takes care of children. I agree that what comes to mind for your mother as "arthritis" is likely too limited, and that definition might need to be expanded in her mind. Could you look at this, and maybe share it with her? https://www.arthritis.org/diseases/systemic-juvenile-idiopathic-arthritisAbout a third of the way down that page is the SYMPTOMS section, with subsections on Fever, Rash, and Joint Pain. Please read it and see if it rings a bell. Best wishes..


Instruction: As soon as they mentioned the salmon-colored intermittent rash I was like STILLS! Very rare but once you've seen it, you never forget it. Anakinra injections worked great for the patient I worked with, along with a major organ transplant due to damage done by the disease.

Output: I think we need more information. The workup is well described here, and I agree with their consideration of JIA vs. rheumatic fever vs. oncologic. But Im hoping theres more information than this. What did they ultimately diagnose her with when she was sent home? Did they do anything to treat her (i.e. IV or oral steroids)? If they did treat her, did anything help or improve her symptoms at all? Is she following up with any outpatient specialists? Again, their workup sounds thorough, just seems like some info was left out about what they actually did to treat her.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: As soon as they mentioned the salmon-colored intermittent rash I was like STILLS! Very rare but once you've seen it, you never forget it. Anakinra injections worked great for the patient I worked with, along with a major organ transplant due to damage done by the disease.. ### Response: I think we need more information. The workup is well described here, and I agree with their consideration of JIA vs. rheumatic fever vs. oncologic. But Im hoping theres more information than this. What did they ultimately diagnose her with when she was sent home? Did they do anything to treat her (i.e. IV or oral steroids)? If they did treat her, did anything help or improve her symptoms at all? Is she following up with any outpatient specialists? Again, their workup sounds thorough, just seems like some info was left out about what they actually did to treat her..


Instruction: Hi Dr, they diagnosed her with rheumatoid arthritis on discharge and prescribed her something, my mom doesn't think it's arthritis.

Output: Arthritis in this case is not exactly the same as what most people think of as arthritis. Older people get osteoarthritis where the cushioning between joints breaks down and you get pain from bone grinding against bone. Rheumatoid arthritis (and JIA, or Juvenile Idiopathic Arthritis, which is much more common in kids) are autoimmune disorders where the bodys immune system attacks itself in various places. One place is the joints but it can also cause a whole host of other weird symptoms including fever and rashes.In this case, what youve described sounds highly rheumatologic in nature. RA and JIA both fit in that category, though Id put my money on JIA based on her age and symptoms. A pediatric rheumatologist is your absolute best bet to get this figured out and get her on medications to treat and prevent flare ups like this.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Hi Dr, they diagnosed her with rheumatoid arthritis on discharge and prescribed her something, my mom doesn't think it's arthritis.. ### Response: Arthritis in this case is not exactly the same as what most people think of as arthritis. Older people get osteoarthritis where the cushioning between joints breaks down and you get pain from bone grinding against bone. Rheumatoid arthritis (and JIA, or Juvenile Idiopathic Arthritis, which is much more common in kids) are autoimmune disorders where the bodys immune system attacks itself in various places. One place is the joints but it can also cause a whole host of other weird symptoms including fever and rashes.In this case, what youve described sounds highly rheumatologic in nature. RA and JIA both fit in that category, though Id put my money on JIA based on her age and symptoms. A pediatric rheumatologist is your absolute best bet to get this figured out and get her on medications to treat and prevent flare ups like this..


Instruction: NAD.OP, Is the rash painful and burning? Do they resemble hives?I ask because two of my neighbors and three other friends, ages ranging from 16-65 have something very similar. Doctors can't explain it. The 16 year old has been at Stanford Children's for almost a year, and the 65 year old had success being treated with steroids after only a month. Same affliction.They look like hives yes but they come and go on multiple parts of her body within minutes. She says it hurts where the spots are as well

Output: Juvenile Rheumatoid Arthritis, also known as Juvenile Idiopathic Arthritis, is different from old peoples arthritis. This is an autoimmune problem that needs to be followed with a rheumatologist. The questions and confusion you and your mother are having are both very common and understandable.This is a complicated condition - you and your mother should both go to the next appointment to ask all these questions and more. If you have doubts about her diagnosis or want the test results or discharge summary explained better, talk to her rheumatologist ASAP.Keep taking the NSAID she was prescribed as directed - this is a safe long-term treatment to reduce inflammation (you said Indomethacin in another post). Dont stop her treatment on your own without talking with her doctor.Read more here:https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis/juvenile-idiopathic-arthritis

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: NAD.OP, Is the rash painful and burning? Do they resemble hives?I ask because two of my neighbors and three other friends, ages ranging from 16-65 have something very similar. Doctors can't explain it. The 16 year old has been at Stanford Children's for almost a year, and the 65 year old had success being treated with steroids after only a month. Same affliction.They look like hives yes but they come and go on multiple parts of her body within minutes. She says it hurts where the spots are as well. ### Response: Juvenile Rheumatoid Arthritis, also known as Juvenile Idiopathic Arthritis, is different from old peoples arthritis. This is an autoimmune problem that needs to be followed with a rheumatologist. The questions and confusion you and your mother are having are both very common and understandable.This is a complicated condition - you and your mother should both go to the next appointment to ask all these questions and more. If you have doubts about her diagnosis or want the test results or discharge summary explained better, talk to her rheumatologist ASAP.Keep taking the NSAID she was prescribed as directed - this is a safe long-term treatment to reduce inflammation (you said Indomethacin in another post). Dont stop her treatment on your own without talking with her doctor.Read more here:https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis/juvenile-idiopathic-arthritis.


Instruction: I don't doubt the diagnosis but what worries me is that OP stated they live in Upstate NY. Most people around here (I'm by Fort Drum) have to travel to Rochester, Buffalo, or Syracuse if they aren't close enough to NYC. Even worse, if you can't private pay or don't have commercial insurance (translation if you have any form of Medicaid) it can be MONTHS waiting for an appointment, and should an 8 year old go without treatment for several months?Just to give you an idea on time frames: my children's my pediatrician started the process to refer my disabled 12yo son to pediatric endocrinology the 3rd week of August.I got the call LAST WEEK to make an appointment for March 2023 in Syracuse. So that's nearly 7 months from start to finish. FWIW our pediatrician doesn't think my son's issue is endocrine related but due diligence, you know?And this isn't new. Had to bring same boy child to Buffalo when he was 6 for ENT and neurologist appointments (well, Rochester was a possibility but I have family in the Buffalo area I can stay with). Same boy also went to Westchester outside of NYC for medical genetics because the waiting list for Syracuse was 2 YEARS LONG the last I asked and the downstate appointment was "only" a five month wait. But, family in the area, so worth the trip to see family too.Sorry for the novel. Thank you for being a pediatrician. <3

Output: This is true for an outpatient making a new patient appointment that is not deemed medically urgent by either the referring physician or the office receiving the referral.However, when a patient is seen as a consult in the hospital, they are typically seen in relatively short fashion as a follow up patient by that consulting sub-specialist. (EDIT: for diagnoses that need it. Not for every general admission.)A patient with a new diagnosis of JIA would typically be sent home with a 2 week course of an anti-inflammatory and be seen by the consulting rheumatologist or a colleague within that time period to plan the next phase of treatment. This type of case is not discharged without solidifying the plan for follow up.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: I don't doubt the diagnosis but what worries me is that OP stated they live in Upstate NY. Most people around here (I'm by Fort Drum) have to travel to Rochester, Buffalo, or Syracuse if they aren't close enough to NYC. Even worse, if you can't private pay or don't have commercial insurance (translation if you have any form of Medicaid) it can be MONTHS waiting for an appointment, and should an 8 year old go without treatment for several months?Just to give you an idea on time frames: my children's my pediatrician started the process to refer my disabled 12yo son to pediatric endocrinology the 3rd week of August.I got the call LAST WEEK to make an appointment for March 2023 in Syracuse. So that's nearly 7 months from start to finish. FWIW our pediatrician doesn't think my son's issue is endocrine related but due diligence, you know?And this isn't new. Had to bring same boy child to Buffalo when he was 6 for ENT and neurologist appointments (well, Rochester was a possibility but I have family in the Buffalo area I can stay with). Same boy also went to Westchester outside of NYC for medical genetics because the waiting list for Syracuse was 2 YEARS LONG the last I asked and the downstate appointment was "only" a five month wait. But, family in the area, so worth the trip to see family too.Sorry for the novel. Thank you for being a pediatrician. <3. ### Response: This is true for an outpatient making a new patient appointment that is not deemed medically urgent by either the referring physician or the office receiving the referral.However, when a patient is seen as a consult in the hospital, they are typically seen in relatively short fashion as a follow up patient by that consulting sub-specialist. (EDIT: for diagnoses that need it. Not for every general admission.)A patient with a new diagnosis of JIA would typically be sent home with a 2 week course of an anti-inflammatory and be seen by the consulting rheumatologist or a colleague within that time period to plan the next phase of treatment. This type of case is not discharged without solidifying the plan for follow up..


Instruction: Thank you for your response, I cant recall having that experience. I think it may have happened once with my son when he was an infant (pediatric GI after his second hospital stay) but admittedly my memory is foggy.

Output: This sounds most like JIA to me. Once a patient is 16 this can be termed Stills disease, which has a characteristic evervescent rash like your sister has. Has she seen a PEDIATRIC rheumatologist? How far are yall from Rochester, NY? Dm me if you prefer.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Thank you for your response, I cant recall having that experience. I think it may have happened once with my son when he was an infant (pediatric GI after his second hospital stay) but admittedly my memory is foggy.. ### Response: This sounds most like JIA to me. Once a patient is 16 this can be termed Stills disease, which has a characteristic evervescent rash like your sister has. Has she seen a PEDIATRIC rheumatologist? How far are yall from Rochester, NY? Dm me if you prefer..


Instruction: We are a little south of Albany. Are JIA and Stills technically the same thing? We Have an appointment with pediatric rheumatologist next week. Could the reaction have been caused by a vaccine? She got it two weeks before the symptoms started

Output: I may have said it wrong- Stills is a name given to systemic onset juvenile inflammatory arthritis, its a type of JIA. Peds rheum is exactly who yall should be seeing and they should be able to Advise if her symptoms could be vaccine related or completely different. Keep us updatedSounds like JIA. Episodic rashes and fevers fit. Ferritin supports the diagnosis.Youre mom is wrong and this absolutely sounds like rheumatoid arthritis Im sorry to say. She probably doesnt understand that rheumatoid arthritis is not just joint pain but can be fever feeling generally sick last week the interesting rash that youre describing and other auto immune future so its not like osteoarthritis that you would see in an older person for example

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: We are a little south of Albany. Are JIA and Stills technically the same thing? We Have an appointment with pediatric rheumatologist next week. Could the reaction have been caused by a vaccine? She got it two weeks before the symptoms started. ### Response: I may have said it wrong- Stills is a name given to systemic onset juvenile inflammatory arthritis, its a type of JIA. Peds rheum is exactly who yall should be seeing and they should be able to Advise if her symptoms could be vaccine related or completely different. Keep us updatedSounds like JIA. Episodic rashes and fevers fit. Ferritin supports the diagnosis.Youre mom is wrong and this absolutely sounds like rheumatoid arthritis Im sorry to say. She probably doesnt understand that rheumatoid arthritis is not just joint pain but can be fever feeling generally sick last week the interesting rash that youre describing and other auto immune future so its not like osteoarthritis that you would see in an older person for example.


Instruction: Do doctors take offense to their patients going to a different practice/not believing the diagnosis?Demographic Info: 24F, 54, 120lbs, white, ~1 year duration, location of pain is basically the joints in my hands, feet, ankle, wrists, knees, and elbows. Non-smoker.Hi all. Sorry if this isnt allowed, Im new here. Ive been to quite a few doctors in the past 10 months (1 Orthopedic, 2 Rheumatologist, 2 Primary Physicians) for the same issues (joint pain primarily, with some secondary concerns). I believe I have an autoimmune disease and suspect its rheumatoid arthritis, but now Im suspecting lupus after my most recent rheumatologist visit. They all have told me (besides the one primary care physician) that it is not rheumatology related, but they have also all either given me either no answer on what it could be or an answer without any real evaluation. The disease/disorder that they say it could be also doesnt match my symptoms at all.Im really at a loss right now, because I want to believe that they have my best interest at heart, but for me to believe a diagnosis, either the symptoms have to match or there needs to be some kind of test result that indicates something.If I go to a new practice that is two hours away, would that look bad? I want answers, but the practices near me cant provide answers using quantifiable/visual data.

Output: I think most doctors don't care. What can get a little bit annoying is when there's clearly nothing relevant to said specialty going on and they keep seeking multiple opinions. It'd be hard for TWO rheumatologists to miss both RA & Lupus, considering these are probably the most bread and butter diseases they see (other than fibromyalgia). But feel free to try a third (technically 6th opinion). You should go to an academic center if you have not.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Do doctors take offense to their patients going to a different practice/not believing the diagnosis?Demographic Info: 24F, 54, 120lbs, white, ~1 year duration, location of pain is basically the joints in my hands, feet, ankle, wrists, knees, and elbows. Non-smoker.Hi all. Sorry if this isnt allowed, Im new here. Ive been to quite a few doctors in the past 10 months (1 Orthopedic, 2 Rheumatologist, 2 Primary Physicians) for the same issues (joint pain primarily, with some secondary concerns). I believe I have an autoimmune disease and suspect its rheumatoid arthritis, but now Im suspecting lupus after my most recent rheumatologist visit. They all have told me (besides the one primary care physician) that it is not rheumatology related, but they have also all either given me either no answer on what it could be or an answer without any real evaluation. The disease/disorder that they say it could be also doesnt match my symptoms at all.Im really at a loss right now, because I want to believe that they have my best interest at heart, but for me to believe a diagnosis, either the symptoms have to match or there needs to be some kind of test result that indicates something.If I go to a new practice that is two hours away, would that look bad? I want answers, but the practices near me cant provide answers using quantifiable/visual data.. ### Response: I think most doctors don't care. What can get a little bit annoying is when there's clearly nothing relevant to said specialty going on and they keep seeking multiple opinions. It'd be hard for TWO rheumatologists to miss both RA & Lupus, considering these are probably the most bread and butter diseases they see (other than fibromyalgia). But feel free to try a third (technically 6th opinion). You should go to an academic center if you have not..


Instruction: The reason I dont really trust the answers of the rheumatologist is because of the lack of testing/evaluation/time really spent trying to understand whats going on. If a doctor ordered a bunch of lab work and based on the lab work decided it was/wasnt something, I would believe it but they barely looked at my joints, and one flat out said that they dont believe my pain

Output: Not saying this is your case but an example would be a kid hitting his head then acting normal and coming into the ED. How could you tell he didnt have a head bleed. Well, it is kind of what I do and I know which kids should get a head CT and which shouldnt. So maybe they are seeing something that says no.Another problem is when I see that people have gone to many doctors, I instantly think they are doctor shopping for the diagnosis they want. It definitely biases me and if you go to a rheumatologist, I am going to assume they did their workup, so I am not going to be looking for anything rheumatological. So I am even less likely to draw labs.Not saying either of these things are your case and maybe stuff is getting missed which is a bummer. But all in all, no I dont mind if people get second opinions.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: The reason I dont really trust the answers of the rheumatologist is because of the lack of testing/evaluation/time really spent trying to understand whats going on. If a doctor ordered a bunch of lab work and based on the lab work decided it was/wasnt something, I would believe it but they barely looked at my joints, and one flat out said that they dont believe my pain. ### Response: Not saying this is your case but an example would be a kid hitting his head then acting normal and coming into the ED. How could you tell he didnt have a head bleed. Well, it is kind of what I do and I know which kids should get a head CT and which shouldnt. So maybe they are seeing something that says no.Another problem is when I see that people have gone to many doctors, I instantly think they are doctor shopping for the diagnosis they want. It definitely biases me and if you go to a rheumatologist, I am going to assume they did their workup, so I am not going to be looking for anything rheumatological. So I am even less likely to draw labs.Not saying either of these things are your case and maybe stuff is getting missed which is a bummer. But all in all, no I dont mind if people get second opinions..


Instruction: I get this vibe a lot too, and I try to bring up questions, but then I get talked down to for asking in the first place

Output: A big part of medicine is learning to read research and interpret the results. You can find a study showing practically anything (one that springs to mind shows no benefit to wearing a parachute vs not wearing one when jumping from a plane). That doesn't mean the information is valid, or valid in the slightly different context to which it often tries to get applied.Doctors generally appreciate an interested and engaged patient very much. We don't appreciate someone who thinks they know better, especially if there are some obvious, fundamental gaps or flaws in their knowledge. These knowledge gaps may not be addressable in a reasonable time frame, so many of us won't bother to try.We (usually) aren't just gatekeeping treatment, there are sometimes significant potential harms from engaging in whatever revolutionary therapy has been suggested online.Actual expertise can sometimes be indistinguishable from ego, depending on what you go into the consult looking for.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: I get this vibe a lot too, and I try to bring up questions, but then I get talked down to for asking in the first place. ### Response: A big part of medicine is learning to read research and interpret the results. You can find a study showing practically anything (one that springs to mind shows no benefit to wearing a parachute vs not wearing one when jumping from a plane). That doesn't mean the information is valid, or valid in the slightly different context to which it often tries to get applied.Doctors generally appreciate an interested and engaged patient very much. We don't appreciate someone who thinks they know better, especially if there are some obvious, fundamental gaps or flaws in their knowledge. These knowledge gaps may not be addressable in a reasonable time frame, so many of us won't bother to try.We (usually) aren't just gatekeeping treatment, there are sometimes significant potential harms from engaging in whatever revolutionary therapy has been suggested online.Actual expertise can sometimes be indistinguishable from ego, depending on what you go into the consult looking for..


Instruction: You will have to wait a bit as a new patient but that is normal. I referred someone with MS to Mayo's clinic and they did an amazing workup--that person goes there annually now for follow up. I would start by going online to their website for JH and reach out, see what conditions they specialize in. https://www.hopkinsrheumatology.org/make-an-appointment/ I don't have experience with which centers in the country are considered the best for your condition but you can definitely research that too. Any place where you make an appointment will let you know where to have your past records sent, however be prepared to have labs and tests repeated for thoroughness.

Output: Nobody cares. They'll go about their day and think about other things. I'm sure if you see enough rheumatologists, somebody will diagnose you with an autoimmune disease. You can always find that 1/10 dissenting opinion if you see enough of them. Same with any other common disease/complaint in another subspecialty (IBD in GI, heart palpitations in cardiology, etc). See enough of them, you'll get a diagnosis attached to your medical record.It's up to you decide if all the other doctors were just lazy/stupid and if that final rheumatologist you found that agrees with your self diagnosis is actually correct.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: You will have to wait a bit as a new patient but that is normal. I referred someone with MS to Mayo's clinic and they did an amazing workup--that person goes there annually now for follow up. I would start by going online to their website for JH and reach out, see what conditions they specialize in. https://www.hopkinsrheumatology.org/make-an-appointment/ I don't have experience with which centers in the country are considered the best for your condition but you can definitely research that too. Any place where you make an appointment will let you know where to have your past records sent, however be prepared to have labs and tests repeated for thoroughness.. ### Response: Nobody cares. They'll go about their day and think about other things. I'm sure if you see enough rheumatologists, somebody will diagnose you with an autoimmune disease. You can always find that 1/10 dissenting opinion if you see enough of them. Same with any other common disease/complaint in another subspecialty (IBD in GI, heart palpitations in cardiology, etc). See enough of them, you'll get a diagnosis attached to your medical record.It's up to you decide if all the other doctors were just lazy/stupid and if that final rheumatologist you found that agrees with your self diagnosis is actually correct..


Instruction: F33 - fingers go pale and numbMy best friend, f33, has been having this on and off for years now. She asked me to post on Reddit.Shes always suspected Raynauds Disease. Her fingers go pale white, tingly like pins and needles, and numb. It happens at least once a month.Ill add a photo in the comments.Is there anything she can do? Would there be any long-term issues?

Output: It's Raynaud phenomenon. Even though it's sometimes linked to some rheumatological conditions, usually it isn't pathological. Consider going to a specialist in family medicine or family medicine if it causes discomfort or if there are other symptoms in association.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: F33 - fingers go pale and numbMy best friend, f33, has been having this on and off for years now. She asked me to post on Reddit.Shes always suspected Raynauds Disease. Her fingers go pale white, tingly like pins and needles, and numb. It happens at least once a month.Ill add a photo in the comments.Is there anything she can do? Would there be any long-term issues?. ### Response: It's Raynaud phenomenon. Even though it's sometimes linked to some rheumatological conditions, usually it isn't pathological. Consider going to a specialist in family medicine or family medicine if it causes discomfort or if there are other symptoms in association..


Instruction: [F26] Fingers swollen, stiff, w small 'lumps'/bumps around joints?For the past two weeks + my fingers on one hand have all been pretty swollen and stiff, to the point where I haven't been able to bend them all the way down. There has also been some redness on some of the joints. However, in the past week as the bigger swelling has gone down a bit/the problem has persisted, I've noticed small bumps around the joints  most of these are kind of hard to capture in pics, but you can feel them lightly running your finger along the skin (i.e. you don't have to press down to feel them). See pics: https://imgur.com/a/TQRDVQSI've been finding this really painful, especially as I work typing all day so it's not been ideal. I've had a p busy 2 weeks so haven't made it to the dr yet, but also keep thinking its about to resolve itself and it just keeps on going  Not itchy at all, just painful.They're worst in the morning in terms of swelling  by the end of the some days I've nearly been able to get them all the way down, or get some of them fully down, & I think its on the way out but then they're just as swollen and stiff the next morning. EDIT: Just realised I should probably say I haven't injured or burnt the hand/fingers recently, or at least if I did it was so unmemorable I really doubt it is the cause!For the past ~year I've had a fair amount of joint pain and some stiffness which is worst in the mornings, mainly in my hands & knees. However, never had it where it lasts throughout the day for so long & the little bumps are also rly weirding me out. Does anyone know what this is??? Or how I fix it?? Should I get it checked by my GP or is it likely to self resolve?I've also been experiencing a lot of other health complaints (you can prob see in my reddit history lol), like recurrent episodes of mouth and genital ulcers, rashes, etc. All my blood tests ordered by GP have been clear & generally normal  tho have all been done when im generally asymptomatic had one while at A&E for the first flare up of the genital ulcers & had high CRP and monocytes (CRP was 14.9, monocytes 12%  tho monocytes have been between 0.85 and 1.09 in other blood tests which I know is above the 'normal range' in some labs but not the ones used here). So far my GP and some of the community referrals I've had (dermatologist, ophthalmologist) are a bit stumped  waiting on two hospital referrals atm, one for patch testing and one to see a specialist vulval dermatologist. All of the community referrals I've had have suggested my GP refer me to rheumatology but he can't with normal bloods (& wants to wait on hospital referral first to see what they say).

Output: Rheumatologist here: I agree you should see a rheum. It sounds like it might be some sort of artritis, but it has to be seen in person before a diagnosis could be made. You don't have psoriasis, uveitis or an inflammatory bowel disease? Swelling in other joints? What is your ethnicity? In case of genital ulcers, we should also think of diseases like Behets, but like I said, it should be seen by a rheum.A bit odd that he can't send you with normal lab tests. Clinical presentation is way more important than a blood test.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: [F26] Fingers swollen, stiff, w small 'lumps'/bumps around joints?For the past two weeks + my fingers on one hand have all been pretty swollen and stiff, to the point where I haven't been able to bend them all the way down. There has also been some redness on some of the joints. However, in the past week as the bigger swelling has gone down a bit/the problem has persisted, I've noticed small bumps around the joints  most of these are kind of hard to capture in pics, but you can feel them lightly running your finger along the skin (i.e. you don't have to press down to feel them). See pics: https://imgur.com/a/TQRDVQSI've been finding this really painful, especially as I work typing all day so it's not been ideal. I've had a p busy 2 weeks so haven't made it to the dr yet, but also keep thinking its about to resolve itself and it just keeps on going  Not itchy at all, just painful.They're worst in the morning in terms of swelling  by the end of the some days I've nearly been able to get them all the way down, or get some of them fully down, & I think its on the way out but then they're just as swollen and stiff the next morning. EDIT: Just realised I should probably say I haven't injured or burnt the hand/fingers recently, or at least if I did it was so unmemorable I really doubt it is the cause!For the past ~year I've had a fair amount of joint pain and some stiffness which is worst in the mornings, mainly in my hands & knees. However, never had it where it lasts throughout the day for so long & the little bumps are also rly weirding me out. Does anyone know what this is??? Or how I fix it?? Should I get it checked by my GP or is it likely to self resolve?I've also been experiencing a lot of other health complaints (you can prob see in my reddit history lol), like recurrent episodes of mouth and genital ulcers, rashes, etc. All my blood tests ordered by GP have been clear & generally normal  tho have all been done when im generally asymptomatic had one while at A&E for the first flare up of the genital ulcers & had high CRP and monocytes (CRP was 14.9, monocytes 12%  tho monocytes have been between 0.85 and 1.09 in other blood tests which I know is above the 'normal range' in some labs but not the ones used here). So far my GP and some of the community referrals I've had (dermatologist, ophthalmologist) are a bit stumped  waiting on two hospital referrals atm, one for patch testing and one to see a specialist vulval dermatologist. All of the community referrals I've had have suggested my GP refer me to rheumatology but he can't with normal bloods (& wants to wait on hospital referral first to see what they say).. ### Response: Rheumatologist here: I agree you should see a rheum. It sounds like it might be some sort of artritis, but it has to be seen in person before a diagnosis could be made. You don't have psoriasis, uveitis or an inflammatory bowel disease? Swelling in other joints? What is your ethnicity? In case of genital ulcers, we should also think of diseases like Behets, but like I said, it should be seen by a rheum.A bit odd that he can't send you with normal lab tests. Clinical presentation is way more important than a blood test..


Instruction: My hands keep turning yellow. Can anyone tell me why?Im a 36F and I have Sjgrens syndrome and endometriosis. I take Plaquinil, hydroxyzine, and a DIM supplement. My CBC, rheumatology bloodwork, and liver bloodwork were all fine. When it happens, my hands sometimes feel a bit numb.

Output: If you have a question about something visual, like a skin condition, please include one of preferably more of the pictures in your post as an imgur.com link. It makes it easier to help with something when it can be examined visually.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: My hands keep turning yellow. Can anyone tell me why?Im a 36F and I have Sjgrens syndrome and endometriosis. I take Plaquinil, hydroxyzine, and a DIM supplement. My CBC, rheumatology bloodwork, and liver bloodwork were all fine. When it happens, my hands sometimes feel a bit numb.. ### Response: If you have a question about something visual, like a skin condition, please include one of preferably more of the pictures in your post as an imgur.com link. It makes it easier to help with something when it can be examined visually..


Instruction: F19 ANA development (possibly rapidly?)So context: I'm not allergic to anything and never have been. In November of 2019 I had what I thought was a bug bite on my elbow that exploded into full hives and three days later I was in the ER getting an epinephrine drip (I think. I was super out of it and my mom was too beside herself with worry to focus on what they did) because it developed to the point where my ears and lips were swollen and my throat tightened up significantly. Following that, I've been on heavy antihistamines (A and B) and can't get off them without the hives come back. I've also been having joint pain randomly since then (wrists and ankles primarily)In January of 2022 my allergist ran a lupus diagnostic panel on my blood but there wasn't anything other than general inflammation flagging the systemProblems continue to occur and my former pediatrician got me in with a local rheumatology clinic. I finally get in December 2022 (I'm in college and it had to be while I was on break) and I get the results and I have speckled+homogenous ANAs at a 1:160 ratioTL;DR ANAs went from not showing up to 1:160 in the span of 11 months. Any clue what's up?

Output: An ANA is a nonspecific test, not a diagnosis. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: F19 ANA development (possibly rapidly?)So context: I'm not allergic to anything and never have been. In November of 2019 I had what I thought was a bug bite on my elbow that exploded into full hives and three days later I was in the ER getting an epinephrine drip (I think. I was super out of it and my mom was too beside herself with worry to focus on what they did) because it developed to the point where my ears and lips were swollen and my throat tightened up significantly. Following that, I've been on heavy antihistamines (A and B) and can't get off them without the hives come back. I've also been having joint pain randomly since then (wrists and ankles primarily)In January of 2022 my allergist ran a lupus diagnostic panel on my blood but there wasn't anything other than general inflammation flagging the systemProblems continue to occur and my former pediatrician got me in with a local rheumatology clinic. I finally get in December 2022 (I'm in college and it had to be while I was on break) and I get the results and I have speckled+homogenous ANAs at a 1:160 ratioTL;DR ANAs went from not showing up to 1:160 in the span of 11 months. Any clue what's up?. ### Response: An ANA is a nonspecific test, not a diagnosis. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA.


Instruction: transient ekg changes?I am a 24F, 5'3, 160 pounds. Location on body: heart duration of complaint: since December 8th, 2022. Symptoms, nearly fainting randomly, sharp chest pains that come and go, lightheadedness that gets worse at times, also knuckles, knees, and hands go pale or purple randomly. Concerned about poor circulation. Meds: none, medical problems: sjogrens syndrome, mild anemia, rheumatology suspects dysautonomia, asthma, sleep apnea (use CPAP), The ER did an EKG last night and in the notes it said the t wave depression was consistent with incomplete right bundle branch block. Yet I went to urgent care today for the same chest discomfort, lightheadedness and near fainting episodes (with seeing colors) (didn't want to go to the ER again) and they showed a normal EKG. Can these changes be trainsient and induced by stress, or lack of sleep? I am also concerned my body is shutting down because my body temperature is lower then it usually is. It's usually 98.5 but it's been between 95-97F these past few days let it can't regulate itsself.

Output: They can be transient. They can also be due to improper lead placement

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: transient ekg changes?I am a 24F, 5'3, 160 pounds. Location on body: heart duration of complaint: since December 8th, 2022. Symptoms, nearly fainting randomly, sharp chest pains that come and go, lightheadedness that gets worse at times, also knuckles, knees, and hands go pale or purple randomly. Concerned about poor circulation. Meds: none, medical problems: sjogrens syndrome, mild anemia, rheumatology suspects dysautonomia, asthma, sleep apnea (use CPAP), The ER did an EKG last night and in the notes it said the t wave depression was consistent with incomplete right bundle branch block. Yet I went to urgent care today for the same chest discomfort, lightheadedness and near fainting episodes (with seeing colors) (didn't want to go to the ER again) and they showed a normal EKG. Can these changes be trainsient and induced by stress, or lack of sleep? I am also concerned my body is shutting down because my body temperature is lower then it usually is. It's usually 98.5 but it's been between 95-97F these past few days let it can't regulate itsself.. ### Response: They can be transient. They can also be due to improper lead placement.


Instruction: Please, please help...no one can figure out whats wrong and at my wits endI've posted here before and no one ever seems to answer but I'm getting so sick that I'm basically bed bound from pain.I'm a 32 yo woman, overweight at 280 lbs, diagnosed with Sjogren's, PCOS, and on these medicines:Metoprolol for tachycardia I've had since childhood Metformin for PCOS Spironolactone for low potassium I've had since childhood (used to have constant racing heart and passed out a lot as a kid because of low potassium) as well as PCOS Nuvigil for chronic fatigue Pilocarpine for Sjogren's dryness Doxepin for ribcage pain Rosuvastatin for high cholesterol Low dose naltrexone 3mg for chronic pain Trintellix for depressionA few years ago, like 5 years now, I was healthy and 125 lbs. Then I had my 2nd child, was about 180 after she was born, and developed PCOS. I could not lose weight and gained a little more and got to about 225.In Dec 2019, my psychiatrist put me on Trileptal for mood stability. About a month later, I started to develop pitting edema and severe low ribcage pain and then had absolutely zero appetite whatsoever. I went to the ER with grade 4 edema, severe low rib pain, and blood in my urine and bloody vaginal discharge. No sign of infection, no excess protein, nothing really out of the ordinary aside from GFR that would dip into the 50s before sometimes coming up again and blood. I did get low iron and potassium, needed iv potassium several times, but they could find nothing to easily explain symptoms. This goes on for nearly a year...I got up to 325 lbs even though I could barely eat or get out of bed. I truly thought I would die.I stopped taking my medicine when I couldn't eat, and noticed I felt worse after taking it again. I also felt worse if I exercised. So I stopped Trileptal and rested for about a month and slowly seemed to recover. Then my OBGYN found uterine polyps and I had surgery to remove them. The next month, my gallbladder was removed. The next month, I had surgery to "fix" my urethra since they thought maybe I was having urinary problems stemming from that.But I got better and tried to be okay mentally with the constant dismissals I got from so damn many docs before I finally got some help. It was extremely difficult and I suffered with health anxiety because of it but have done great with therapy. I even managed to get my weight down to 235 after starting exercise after being sure my kidneys were fine again at a consistent GFR over 110.Then a month ago, I got a very bad case of flu. The lower rib pain came back bad. I dismissed it as flu. Recovered from it, then had several days where every muscle in my body felt like it had been lifting heavy weights for days. Everything hurt, and doc said maybe mild myositis from flu. Then I noticed urinary changes. I normally have frequent urination, going a few times a night and usually at least every hour or more. No one can find a cause though. But suddenly not going at night at all and only going like 3 times in the day. Started having white flecks in urine sometimes and strong odor. Then urinalysis started showing blood in urine consistently. Then sharp pains in urethra all the way to anus at times, which I'd had before as well. I have brown vaginal discharge too. A few days ago, I couldn't pee at all and was sent to the er. They can find no reason for my symptoms...nothing on ct, no bacteria in culture, no stones, no nothing. No one knows, but I had to have a foley catheter inserted (was very painful like stabbing) because I had retention and could not pee. Was sent home with it and had it removed next day and I was able to pee again but then developed pitting edema. It's currently grade 1. No cause can be found.I will add in case it is relevant, just before the flu, my pcm referred me to neurology for mris of head and spine and nerve conduction test. I've been having nerve pain for several months. Buzzing, tingling, numbness, shocks, in various places for sustained periods and sometimes just sudden and then goes away. She was thinking the lower rib cage pain may actually be nerve pain since it feels burning at times like the burning headaches in the base of my skull and my neck. My thyroid is sometimes hypo but usually fine, my b12 and magnesium are normal, and I do not have any markers of diabetes other than just being fat currently. My grandma has MS, which she believes was healed by Jesus, but I know enough about it to know that's what she's trying to rule out I'm pretty sure.Can anyone, please , give me some insight about what might be wrong with me? I'm in so much pain with the gnawing, burning pain in the bottom of my ribcage and the electric shock pains in my urethra and anus, and I am so scared of the fact I've got urinary bleeding, vaginal bleeding, and putting edema but no one knows what's up. I've seen rheumatology, nephrology, urology, obgyn, even was sent to a hematology oncologist as a hail-mary.I stay away from Googleing anything because for one, I have too many symptoms to easily fit in a search bar, and I know there's no good coming out of looking at it anyway. I have gotten better care since changing hospital systems after last time this happened, the urologist I saw kept insisting the blood in my urine was from my vagina even though I still had blood in my urine after a catheter was used to sample, and I e just had a really hard time getting docs to push to figure out what's wrong. It feels like since I don't appear to be imminently dying, and they dismiss my pain and exhaustion, no one sees a point in helping.So sorry for the long post but I'm just trying to give as much context as I can. Please let me know if you have any questions as I'm happy to answer.

Output: In the absence of objective findings on imaging and testing, it is possible that weight in itself can cause the multi-system problems that you have. Obesity unfortunately affects numerous organ systems in subtle ways initially.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Please, please help...no one can figure out whats wrong and at my wits endI've posted here before and no one ever seems to answer but I'm getting so sick that I'm basically bed bound from pain.I'm a 32 yo woman, overweight at 280 lbs, diagnosed with Sjogren's, PCOS, and on these medicines:Metoprolol for tachycardia I've had since childhood Metformin for PCOS Spironolactone for low potassium I've had since childhood (used to have constant racing heart and passed out a lot as a kid because of low potassium) as well as PCOS Nuvigil for chronic fatigue Pilocarpine for Sjogren's dryness Doxepin for ribcage pain Rosuvastatin for high cholesterol Low dose naltrexone 3mg for chronic pain Trintellix for depressionA few years ago, like 5 years now, I was healthy and 125 lbs. Then I had my 2nd child, was about 180 after she was born, and developed PCOS. I could not lose weight and gained a little more and got to about 225.In Dec 2019, my psychiatrist put me on Trileptal for mood stability. About a month later, I started to develop pitting edema and severe low ribcage pain and then had absolutely zero appetite whatsoever. I went to the ER with grade 4 edema, severe low rib pain, and blood in my urine and bloody vaginal discharge. No sign of infection, no excess protein, nothing really out of the ordinary aside from GFR that would dip into the 50s before sometimes coming up again and blood. I did get low iron and potassium, needed iv potassium several times, but they could find nothing to easily explain symptoms. This goes on for nearly a year...I got up to 325 lbs even though I could barely eat or get out of bed. I truly thought I would die.I stopped taking my medicine when I couldn't eat, and noticed I felt worse after taking it again. I also felt worse if I exercised. So I stopped Trileptal and rested for about a month and slowly seemed to recover. Then my OBGYN found uterine polyps and I had surgery to remove them. The next month, my gallbladder was removed. The next month, I had surgery to "fix" my urethra since they thought maybe I was having urinary problems stemming from that.But I got better and tried to be okay mentally with the constant dismissals I got from so damn many docs before I finally got some help. It was extremely difficult and I suffered with health anxiety because of it but have done great with therapy. I even managed to get my weight down to 235 after starting exercise after being sure my kidneys were fine again at a consistent GFR over 110.Then a month ago, I got a very bad case of flu. The lower rib pain came back bad. I dismissed it as flu. Recovered from it, then had several days where every muscle in my body felt like it had been lifting heavy weights for days. Everything hurt, and doc said maybe mild myositis from flu. Then I noticed urinary changes. I normally have frequent urination, going a few times a night and usually at least every hour or more. No one can find a cause though. But suddenly not going at night at all and only going like 3 times in the day. Started having white flecks in urine sometimes and strong odor. Then urinalysis started showing blood in urine consistently. Then sharp pains in urethra all the way to anus at times, which I'd had before as well. I have brown vaginal discharge too. A few days ago, I couldn't pee at all and was sent to the er. They can find no reason for my symptoms...nothing on ct, no bacteria in culture, no stones, no nothing. No one knows, but I had to have a foley catheter inserted (was very painful like stabbing) because I had retention and could not pee. Was sent home with it and had it removed next day and I was able to pee again but then developed pitting edema. It's currently grade 1. No cause can be found.I will add in case it is relevant, just before the flu, my pcm referred me to neurology for mris of head and spine and nerve conduction test. I've been having nerve pain for several months. Buzzing, tingling, numbness, shocks, in various places for sustained periods and sometimes just sudden and then goes away. She was thinking the lower rib cage pain may actually be nerve pain since it feels burning at times like the burning headaches in the base of my skull and my neck. My thyroid is sometimes hypo but usually fine, my b12 and magnesium are normal, and I do not have any markers of diabetes other than just being fat currently. My grandma has MS, which she believes was healed by Jesus, but I know enough about it to know that's what she's trying to rule out I'm pretty sure.Can anyone, please , give me some insight about what might be wrong with me? I'm in so much pain with the gnawing, burning pain in the bottom of my ribcage and the electric shock pains in my urethra and anus, and I am so scared of the fact I've got urinary bleeding, vaginal bleeding, and putting edema but no one knows what's up. I've seen rheumatology, nephrology, urology, obgyn, even was sent to a hematology oncologist as a hail-mary.I stay away from Googleing anything because for one, I have too many symptoms to easily fit in a search bar, and I know there's no good coming out of looking at it anyway. I have gotten better care since changing hospital systems after last time this happened, the urologist I saw kept insisting the blood in my urine was from my vagina even though I still had blood in my urine after a catheter was used to sample, and I e just had a really hard time getting docs to push to figure out what's wrong. It feels like since I don't appear to be imminently dying, and they dismiss my pain and exhaustion, no one sees a point in helping.So sorry for the long post but I'm just trying to give as much context as I can. Please let me know if you have any questions as I'm happy to answer.. ### Response: In the absence of objective findings on imaging and testing, it is possible that weight in itself can cause the multi-system problems that you have. Obesity unfortunately affects numerous organ systems in subtle ways initially..


Instruction: Help interpreting liver testAge42Sex fHeight 54Weight190Race CaucasianDuration of complaint dates referenced on theLocationAny existing relevant medical issues? so many lol RA,hEDS,Endometriosis,Asthma,Current medications, Zoloft,Simbicort ,prednisone, alburtol,muscle relaxers ciplopram ? ,NambutoneALT 0 - 41 U/L 4/4/21 19 10/8/21 20 8/29/22 346 8/30/22 342 8/31/22 352 9/10/22 316 9/17/22 296AST 10 - 40 U/L 4/4/21 14 10/8/21 21 8/29/22 215 8/30/22 194 8/31/22 195 9/10/22 193 9/17/22 186

Output: You have active inflammation of your liver. Not sure what the cause is. Could be some autoimmune process, fatty liver, meds, supplements, etc. Favor the first two

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Help interpreting liver testAge42Sex fHeight 54Weight190Race CaucasianDuration of complaint dates referenced on theLocationAny existing relevant medical issues? so many lol RA,hEDS,Endometriosis,Asthma,Current medications, Zoloft,Simbicort ,prednisone, alburtol,muscle relaxers ciplopram ? ,NambutoneALT 0 - 41 U/L 4/4/21 19 10/8/21 20 8/29/22 346 8/30/22 342 8/31/22 352 9/10/22 316 9/17/22 296AST 10 - 40 U/L 4/4/21 14 10/8/21 21 8/29/22 215 8/30/22 194 8/31/22 195 9/10/22 193 9/17/22 186. ### Response: You have active inflammation of your liver. Not sure what the cause is. Could be some autoimmune process, fatty liver, meds, supplements, etc. Favor the first two.


Instruction: ostive ANA test, titer of 1:320 and speckled pattern, but negative Connective tissue testI'm a 35 yo Caucasian female, 5'5 and 170 lbs (back to back pregnancies), I vape, I take Omeprazole and lyrica 200 mg daily. The lyrica is for seizures, not pain.Ok, so I just had a bunch of labs drawn, because I've been having numerous symptoms of an autoimmune disease. Chronic fatigue, mouth sores that will randomly show up, lots of head aches, severe random bouts of pain that show up in joint areas that debilitates me when they "flare up". Crippling anxiety, and depression is worsening. And lastly, a random rash that will spread across my cheeks and nose, and sometimes radiate into the tips of my ears.I had a positive ANA test, but the more specific tests showed that I was negative for connective tissue disorders like lupus, RA and sjogrens to name a few. Everything looked fine, and my doctor told me that I probably just have inflammation somewhere in my body.My questions are:. Could I still have something like lupus, even tho the CTD labs were negative, but ANA had all 3 parts show abnormal results? And, this isn't my first positive ANA test. It happened 6 years ago, but nothing further was looked into. Where do I go from here to get better answers? All these symptoms are debilitating my life.

Output: techincally you could still have something on the spectrum of connective tissue diseases with current antibodies negative, but +ANA are pretty common in the health population. best bet is probably continuous follow up with a single primary care doctor, and referral to whatever specialists they think best.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: ostive ANA test, titer of 1:320 and speckled pattern, but negative Connective tissue testI'm a 35 yo Caucasian female, 5'5 and 170 lbs (back to back pregnancies), I vape, I take Omeprazole and lyrica 200 mg daily. The lyrica is for seizures, not pain.Ok, so I just had a bunch of labs drawn, because I've been having numerous symptoms of an autoimmune disease. Chronic fatigue, mouth sores that will randomly show up, lots of head aches, severe random bouts of pain that show up in joint areas that debilitates me when they "flare up". Crippling anxiety, and depression is worsening. And lastly, a random rash that will spread across my cheeks and nose, and sometimes radiate into the tips of my ears.I had a positive ANA test, but the more specific tests showed that I was negative for connective tissue disorders like lupus, RA and sjogrens to name a few. Everything looked fine, and my doctor told me that I probably just have inflammation somewhere in my body.My questions are:. Could I still have something like lupus, even tho the CTD labs were negative, but ANA had all 3 parts show abnormal results? And, this isn't my first positive ANA test. It happened 6 years ago, but nothing further was looked into. Where do I go from here to get better answers? All these symptoms are debilitating my life.. ### Response: techincally you could still have something on the spectrum of connective tissue diseases with current antibodies negative, but +ANA are pretty common in the health population. best bet is probably continuous follow up with a single primary care doctor, and referral to whatever specialists they think best..


Instruction: They ended up referring me to an RA. This is the second time I've had a positive ANA test within 5 years. The speckled pattern is what's making me wonder. I have more of the symptoms of an autoimmune disease, than I don't have. I hit almost all symptoms of moderate lupus, without kidney problems, but I HAVE within the last year, had protein in my urine, but I was pregnant at that time. There's a lot going on I feel kinda dismissed by the doctor. It's almost their discretion to diagnose, because of symptoms and positive ANA alone. I've read on many medical documents that a negative anti ds is not absolute to not having an autoimmune disease. I've heard it's hard to get diagnosed, so hopefully the RA can give me some more definite answers, once I actually get in to see them :/

Output: lupus had a discrete diagnostic criteria, it might not be as discretionary as you think. unfortunately the symptoms of many rheumatological diseases overlap heavily with many non rheumatological conditions. best of luck.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: They ended up referring me to an RA. This is the second time I've had a positive ANA test within 5 years. The speckled pattern is what's making me wonder. I have more of the symptoms of an autoimmune disease, than I don't have. I hit almost all symptoms of moderate lupus, without kidney problems, but I HAVE within the last year, had protein in my urine, but I was pregnant at that time. There's a lot going on I feel kinda dismissed by the doctor. It's almost their discretion to diagnose, because of symptoms and positive ANA alone. I've read on many medical documents that a negative anti ds is not absolute to not having an autoimmune disease. I've heard it's hard to get diagnosed, so hopefully the RA can give me some more definite answers, once I actually get in to see them :/. ### Response: lupus had a discrete diagnostic criteria, it might not be as discretionary as you think. unfortunately the symptoms of many rheumatological diseases overlap heavily with many non rheumatological conditions. best of luck..


Instruction: 6 year old dying from ARDS all labs are negativeHello, on March 15th my 6yr old son had a fever and cough. This continued through March 17th. He seemed fine the entirety of March 18th. On March 19th he started presenting with a full body light petechial rash and fevers. Appetite, fluid in take and behavior were all very normal. Would occasionally become sleepy with the fevers. Fevers would come down with Tylenol. Over the next two weeks the fevers became more frequent but were still easily treated with Tylenol. On March 31st he began to lose energy and didnt really want to get out of bed. On April 1st he started refused food and drink. The early hours of April 2nd he began vomiting. We had several appointments with his PCM, urgent care, and nurse telehealth during these two weeks. All advising its just something viral and should resolve on its own. After refusing food and drink and then vomiting we decided we couldnt wait the 24 hours to his next appointment and took him to the emergency room. He began requiring blow by O2 while sleeping from night one at the hospital. The petechial rash started to become severe in places where he had any medium to heavy pressure (blood pressure cuff, being held for accessing his port a cath). On April 4th he began needing supplemental o2, between 1.5-5L. After a week in the hospital he was diagnosed with a severe CMV vierma infection. He was started on gancylovir to treat on April 10th. After a few weeks of treatment his CMV levels have finally come down to the 100s (as of early this week). On 4/13 he was out on high flow o2 due to hypoxia. He continued to range in requirements of 15L-30L and 60%FIO2 -100% FIO2. We were advised his lungs would begin to heal as his cmv number declined which has clearly not been the case. On 5/1 he was rapid-ed to the ICU due to expected impending respiratory failure with hypoxia. In the icu he had episodes or high hr, blood pressure, and low O2. However, these episodes were short lived at the beginning and after they were over he would go back to his normal goofy self. Over the next 36 hours his episodes became longer and more frequent. He has a planned intubation set for May 3rd at 6am and a planned brohncoscopy set for May 3rd at 9am. Original plans were to begin attempting ex-intubation post procedure. However at approximately 3am on May 3rd he had an episode that did not resolve. He was placed on a ventilator which failed due to CO2 build up, oscillator was attempted and failed due to CO2 build up. He was then placed on bivalve ecmo on max pediatric settings. He remains on max ecmo settings to present day. He has since been diagnosed with ARDS. He has had an extensive infectious disease work up and rheumatology work up. Every test result has come back negative. Tests show high levels of inflammation. Doctors at our current hospital refuse to do a lung biopsy due to expected death during or as a direct result of the procedure. Please help. We are being told were reaching the end of our options here. We have a second opinion request put in with Boston Childrens Hospital but are willing to travel anywhere that may be able to help him. I can provide any and all test results you need to help and the team here is typically willing to run more with plausible explanation. He has a complex medical history as well be no full encompassing genetic diagnosis.He is currently on anti fungals, antivirals, and antibacterials. He also has a BMX drip for a diuretic. He is on several medications for sedation and pain management for ecmo.

Output: I am so sorry to hear about your son. I have a child about that age, and can't imagine.CMV is not a typical infection in someone with a healthy immune system, usually we see it with transplant or lymphoma but there can be congenital immune system problems that predispose to severe CMV. It can certainly cause all of the symptoms your son is showing including the petechial rash and severe pneumonitis leading to ARDS. It can affect nearly any organ.However CMV can also reactivate due to stress from other issues so it is difficult to say if this is the cause of his symptoms, or just a sign of how sick he is. While it is risky to do a lung biopsy in a person on venous ECMO, if there is no diagnosis within a week it is reasonable to proceed with doing this, with fairly good safety outcomes.https://pubmed.ncbi.nlm.nih.gov/27894766/The most important thing though is if the treating physicians think not only is it safe (there are other issues such as clotting/platelet disorders beyond ECMO anticoagulation) but if it will change management. Unfortunately a large percent of biopsies will be indeterminate - just showing nonspecific findings of diffuse lung damage from ARDS - and the ones that do change management are generally because they find something that is not treatable. I would entirely defer to your physician team here. They also want very much what is best for your child - doctors and nurses care much more than you may see about thing turning out well - and have the data and expertise to properly advise you.If it is CMV, then the inflammation from the infection will lag well behind the time the virus is cleared with antiviral therapy. He may just need time for the inflammation to improve and then to heal to allow decannulation.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: 6 year old dying from ARDS all labs are negativeHello, on March 15th my 6yr old son had a fever and cough. This continued through March 17th. He seemed fine the entirety of March 18th. On March 19th he started presenting with a full body light petechial rash and fevers. Appetite, fluid in take and behavior were all very normal. Would occasionally become sleepy with the fevers. Fevers would come down with Tylenol. Over the next two weeks the fevers became more frequent but were still easily treated with Tylenol. On March 31st he began to lose energy and didnt really want to get out of bed. On April 1st he started refused food and drink. The early hours of April 2nd he began vomiting. We had several appointments with his PCM, urgent care, and nurse telehealth during these two weeks. All advising its just something viral and should resolve on its own. After refusing food and drink and then vomiting we decided we couldnt wait the 24 hours to his next appointment and took him to the emergency room. He began requiring blow by O2 while sleeping from night one at the hospital. The petechial rash started to become severe in places where he had any medium to heavy pressure (blood pressure cuff, being held for accessing his port a cath). On April 4th he began needing supplemental o2, between 1.5-5L. After a week in the hospital he was diagnosed with a severe CMV vierma infection. He was started on gancylovir to treat on April 10th. After a few weeks of treatment his CMV levels have finally come down to the 100s (as of early this week). On 4/13 he was out on high flow o2 due to hypoxia. He continued to range in requirements of 15L-30L and 60%FIO2 -100% FIO2. We were advised his lungs would begin to heal as his cmv number declined which has clearly not been the case. On 5/1 he was rapid-ed to the ICU due to expected impending respiratory failure with hypoxia. In the icu he had episodes or high hr, blood pressure, and low O2. However, these episodes were short lived at the beginning and after they were over he would go back to his normal goofy self. Over the next 36 hours his episodes became longer and more frequent. He has a planned intubation set for May 3rd at 6am and a planned brohncoscopy set for May 3rd at 9am. Original plans were to begin attempting ex-intubation post procedure. However at approximately 3am on May 3rd he had an episode that did not resolve. He was placed on a ventilator which failed due to CO2 build up, oscillator was attempted and failed due to CO2 build up. He was then placed on bivalve ecmo on max pediatric settings. He remains on max ecmo settings to present day. He has since been diagnosed with ARDS. He has had an extensive infectious disease work up and rheumatology work up. Every test result has come back negative. Tests show high levels of inflammation. Doctors at our current hospital refuse to do a lung biopsy due to expected death during or as a direct result of the procedure. Please help. We are being told were reaching the end of our options here. We have a second opinion request put in with Boston Childrens Hospital but are willing to travel anywhere that may be able to help him. I can provide any and all test results you need to help and the team here is typically willing to run more with plausible explanation. He has a complex medical history as well be no full encompassing genetic diagnosis.He is currently on anti fungals, antivirals, and antibacterials. He also has a BMX drip for a diuretic. He is on several medications for sedation and pain management for ecmo.. ### Response: I am so sorry to hear about your son. I have a child about that age, and can't imagine.CMV is not a typical infection in someone with a healthy immune system, usually we see it with transplant or lymphoma but there can be congenital immune system problems that predispose to severe CMV. It can certainly cause all of the symptoms your son is showing including the petechial rash and severe pneumonitis leading to ARDS. It can affect nearly any organ.However CMV can also reactivate due to stress from other issues so it is difficult to say if this is the cause of his symptoms, or just a sign of how sick he is. While it is risky to do a lung biopsy in a person on venous ECMO, if there is no diagnosis within a week it is reasonable to proceed with doing this, with fairly good safety outcomes.https://pubmed.ncbi.nlm.nih.gov/27894766/The most important thing though is if the treating physicians think not only is it safe (there are other issues such as clotting/platelet disorders beyond ECMO anticoagulation) but if it will change management. Unfortunately a large percent of biopsies will be indeterminate - just showing nonspecific findings of diffuse lung damage from ARDS - and the ones that do change management are generally because they find something that is not treatable. I would entirely defer to your physician team here. They also want very much what is best for your child - doctors and nurses care much more than you may see about thing turning out well - and have the data and expertise to properly advise you.If it is CMV, then the inflammation from the infection will lag well behind the time the virus is cleared with antiviral therapy. He may just need time for the inflammation to improve and then to heal to allow decannulation..


Instruction: Thank you. I fully believe the team here is doing everything thing they can think of. Theyve had entire departments sit down to review his case in multiple departments. The reason we began looking for second opinions is that two of the doctors here on his primary team recommended it. It is very comforting to me that they care more about finding answers for him than being the ones to find the answers. I cant speak enough to how much that says about them as doctors and people.In regards to the cmv inflammation lingering in his lungs. Would there be a high level of infection in that area if a pcr was run from a sample from there if thats what was causing his severe inflammation? If so, would a more aggressive dose of his current antiviral help with it?

Output: That is reassuring to hear. Sounds like they are doing everything they can.If the CMV is the cause, there's unlikely a high level in the lung if any. The antivirals work reasonably well if there's no resistance, the dosage is generally more than necessary for maximum effect, the levels of CMV in the blood can be tracked, and my guess is they are now at worst quite low.Most of sepsis is instead the body's response to an infection. As the immune response ramps up it starts being less and less precise and the rampaging army of white cells causes widespread injury. This continues after the infection is completely cleared despite a counter-inflammatory response that is trying to resolve all of this overactivity. In fact, the counter-response can be just as harmful if overactive, and there can actually be a state of too much and too little immune response at the same time. This is particularly dangerous since it opens things up to other infections.We actually still don't have very good tools to helpfully manipulate this immune response despite decades of research. There are dozens of therapies that are helpful in mice but later failed clinical trials. Sepsis is very dynamic and complex, nowhere near as simple as "on" or "off", and until we are able to adequately characterize it in individual patients treatments will continue to mostly be limited to the infection itself and "supportive care". Fortunately this is still often sufficient, and we've had good outcomes even in patients who were on ECMO for over a month.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Thank you. I fully believe the team here is doing everything thing they can think of. Theyve had entire departments sit down to review his case in multiple departments. The reason we began looking for second opinions is that two of the doctors here on his primary team recommended it. It is very comforting to me that they care more about finding answers for him than being the ones to find the answers. I cant speak enough to how much that says about them as doctors and people.In regards to the cmv inflammation lingering in his lungs. Would there be a high level of infection in that area if a pcr was run from a sample from there if thats what was causing his severe inflammation? If so, would a more aggressive dose of his current antiviral help with it?. ### Response: That is reassuring to hear. Sounds like they are doing everything they can.If the CMV is the cause, there's unlikely a high level in the lung if any. The antivirals work reasonably well if there's no resistance, the dosage is generally more than necessary for maximum effect, the levels of CMV in the blood can be tracked, and my guess is they are now at worst quite low.Most of sepsis is instead the body's response to an infection. As the immune response ramps up it starts being less and less precise and the rampaging army of white cells causes widespread injury. This continues after the infection is completely cleared despite a counter-inflammatory response that is trying to resolve all of this overactivity. In fact, the counter-response can be just as harmful if overactive, and there can actually be a state of too much and too little immune response at the same time. This is particularly dangerous since it opens things up to other infections.We actually still don't have very good tools to helpfully manipulate this immune response despite decades of research. There are dozens of therapies that are helpful in mice but later failed clinical trials. Sepsis is very dynamic and complex, nowhere near as simple as "on" or "off", and until we are able to adequately characterize it in individual patients treatments will continue to mostly be limited to the infection itself and "supportive care". Fortunately this is still often sufficient, and we've had good outcomes even in patients who were on ECMO for over a month..


Instruction: NAD but a fellow ICU mom. Been in twice for my 2yr old and multiple hospitalizations in between. Its a very scary place. Just wanted to say I feel you and hope for a good outcome for your little fighter.

Output: What led to your son having a port?I am sorry this is happening. Has your boy been evaluated for HLH (hemophagocytic lymphohistiocytosis)? ARDS is not a common manifestation of this, but considering the situation of runaway inflammation and that it is occurring in the context of CMV infection, this has to be considered. You can see inappropriate immune stimulation co-occurring with frequent infections and immune deficiency due to there being a milieu of overarching immune dysregulation. Texas Children's Hospital and Cincinnati Children's Hospital are particular specialists in treating these syndromes. I doubt that transfer of a patient on ECMO is possible, but those facilities may at least be able to provide some guidance.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: NAD but a fellow ICU mom. Been in twice for my 2yr old and multiple hospitalizations in between. Its a very scary place. Just wanted to say I feel you and hope for a good outcome for your little fighter.. ### Response: What led to your son having a port?I am sorry this is happening. Has your boy been evaluated for HLH (hemophagocytic lymphohistiocytosis)? ARDS is not a common manifestation of this, but considering the situation of runaway inflammation and that it is occurring in the context of CMV infection, this has to be considered. You can see inappropriate immune stimulation co-occurring with frequent infections and immune deficiency due to there being a milieu of overarching immune dysregulation. Texas Children's Hospital and Cincinnati Children's Hospital are particular specialists in treating these syndromes. I doubt that transfer of a patient on ECMO is possible, but those facilities may at least be able to provide some guidance..


Instruction: Thank you I will ask him team if this has been tested for!Agree with HLH assessment, very tricky disease and its not clear if he was evaluated for it, but sounds like a reasonable suspicion.

Output: Hey OP! I am sorry that you are facing this trying situation. My heart goes out to you and your child!From what you have described, it seems that not only you, but also the doctors are doing their best!The damage to the lung needs time to heal, something that has become a luxury for your child.As you have stated, all other infectious and rheumatological workup is negative. So, they might have tried steroids or intravenous immunoglobulin to tide through this crisis.We just wait, for your child to fight this through!

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Thank you I will ask him team if this has been tested for!Agree with HLH assessment, very tricky disease and its not clear if he was evaluated for it, but sounds like a reasonable suspicion.. ### Response: Hey OP! I am sorry that you are facing this trying situation. My heart goes out to you and your child!From what you have described, it seems that not only you, but also the doctors are doing their best!The damage to the lung needs time to heal, something that has become a luxury for your child.As you have stated, all other infectious and rheumatological workup is negative. So, they might have tried steroids or intravenous immunoglobulin to tide through this crisis.We just wait, for your child to fight this through!.


Instruction: Thank you. Theyre nervous to attempt any immune suppression treatments without a diagnosis due to how severe his CMV infection was.

Output: Well ivig can help. Your child's kidney function test is fine? Is he requiring any inotropes to maintain blood pressure?If kidney is fine and not requiring inotropes ivig might be tried if not used before.

Below is an instruction that describes a task. Write a response that appropriately completes the request. ### Instruction: Thank you. Theyre nervous to attempt any immune suppression treatments without a diagnosis due to how severe his CMV infection was.. ### Response: Well ivig can help. Your child's kidney function test is fine? Is he requiring any inotropes to maintain blood pressure?If kidney is fine and not requiring inotropes ivig might be tried if not used before..