Aa
Inguinal lymph nodes- Swollen 6 years + background
Hi all,
Before I start I will let everyone know that I am seeing a doctor about this, but as you will see in the following comments I do not have much faith that I will get anywhere through that avenue. I will also start with some background.
I am a 23 year old female. For the past 6-7 years I have been struggling with debilitating fatigue, body aches unlike those you get with a flu, rather they feel very deep in my hands, arms, legs etc. (the best I can do is compare it to the so called growing pains you would get growing up) mild to moderate headaches everyday that I typically take Advil for and don’t think anymore about. I take turmeric everyday for the past 3 or 4 years because if I don’t my knees and ankles swell and get hot to the touch. About 4 years ago I got X-rays of my lumbar spine because my left leg was numb (pins & needles) for about 2 months. All I was told from the X-ray was that I had arthritis in all my lumbar vertebrae (very odd for a 19 year old in my opinion). Tbh yea we’re not able to figure out the cause of the numbness and it eventually subsided. Most recently, for the past 4 months I have been getting nauseous very suddenly & throwing up at least once a day. I saw a GI doctor & he told me it was likely stress as I’m in full time school and full time work. Tried to prescribe Zofran which I didn’t take as that cause all sorts of other GI problems.
I have been to doctors about all of these symptoms over the past few years and everyone has told me these things are “normal” and “nothing to worry about”. I’m not sure how feeling terrible most of your life is normal but that’s another conversation.
All of these problems never raised huge alarms to me as I’m the type of person to push through pain without complaining. It wasn’t until I was reading one of my textbooks on the lymphatic system that something may have clicked. About 6 years ago a single Inguinal Lymph node because swollen & I disregarded it as a cyst. As time went on it became larger and more presented. At this time there are about 7 on both sides of the groin that have persisted without shrinking back down. Each between 1-2 inches longways. I frequently have enlarged neck lymph nodes but only 2 smaller ones near either ear are consistently swollen, the rest come and go. Same with my armpits.
I am wondering this this is cause for concern & if I should become a bit more aggressive when it comes to getting answers in this from doctors? I’m sick of living like this.
Additionally, if it does not sound like lymphoma does anyone have any thoughts on what other avenues I should be looking down?
Before I start I will let everyone know that I am seeing a doctor about this, but as you will see in the following comments I do not have much faith that I will get anywhere through that avenue. I will also start with some background.
I am a 23 year old female. For the past 6-7 years I have been struggling with debilitating fatigue, body aches unlike those you get with a flu, rather they feel very deep in my hands, arms, legs etc. (the best I can do is compare it to the so called growing pains you would get growing up) mild to moderate headaches everyday that I typically take Advil for and don’t think anymore about. I take turmeric everyday for the past 3 or 4 years because if I don’t my knees and ankles swell and get hot to the touch. About 4 years ago I got X-rays of my lumbar spine because my left leg was numb (pins & needles) for about 2 months. All I was told from the X-ray was that I had arthritis in all my lumbar vertebrae (very odd for a 19 year old in my opinion). Tbh yea we’re not able to figure out the cause of the numbness and it eventually subsided. Most recently, for the past 4 months I have been getting nauseous very suddenly & throwing up at least once a day. I saw a GI doctor & he told me it was likely stress as I’m in full time school and full time work. Tried to prescribe Zofran which I didn’t take as that cause all sorts of other GI problems.
I have been to doctors about all of these symptoms over the past few years and everyone has told me these things are “normal” and “nothing to worry about”. I’m not sure how feeling terrible most of your life is normal but that’s another conversation.
All of these problems never raised huge alarms to me as I’m the type of person to push through pain without complaining. It wasn’t until I was reading one of my textbooks on the lymphatic system that something may have clicked. About 6 years ago a single Inguinal Lymph node because swollen & I disregarded it as a cyst. As time went on it became larger and more presented. At this time there are about 7 on both sides of the groin that have persisted without shrinking back down. Each between 1-2 inches longways. I frequently have enlarged neck lymph nodes but only 2 smaller ones near either ear are consistently swollen, the rest come and go. Same with my armpits.
I am wondering this this is cause for concern & if I should become a bit more aggressive when it comes to getting answers in this from doctors? I’m sick of living like this.
Additionally, if it does not sound like lymphoma does anyone have any thoughts on what other avenues I should be looking down?
COMMUNITY LEADER
When I'd said that "Your thinking is spot on", I'd meant that it is very correct to look at what started it all. When nodes enlarge, but it's not-cancer, it's called being "reactive". That can be an infection, or else be purely inflammatory. Or an infection can set off chronic inflammation which lasts even after the infection is over.
A reactive node gets larger because it is manufacturing immune cells at a furious pace. Sometimes, it can also fill with fibrosis (scar tissue), which lasts a very, very long time. Sometimes, the infection itself lasts a long time. Speaking of which, do you have a cat? Or Lyme disease in your area?
Yes, it's complicated :)
A reactive node gets larger because it is manufacturing immune cells at a furious pace. Sometimes, it can also fill with fibrosis (scar tissue), which lasts a very, very long time. Sometimes, the infection itself lasts a long time. Speaking of which, do you have a cat? Or Lyme disease in your area?
Yes, it's complicated :)
COMMUNITY LEADER
Hi, it's easy to see this is not cancer - it's inflammatory. It's called "generalized lymphadenopathy". I'll use medical terms throughout, not to showboat but because it's efficient. Please feel free to ask for elaborations if you can't easily look things up. You shouldn't have to be suffering this way.
We do want to hopefully get you off the Advil before it ruins your stomach. But yes, we do want other anti-inflammatories instead. We also can try to identify and remove what triggers the inflammation.
"I take turmeric everyday for the past 3 or 4 years because if I don’t my knees and ankles swell and get hot to the touch."
So that's a prime example. There are also ginger, anthocyanins like tart cherry, phytosterols, mint/menthol, capsaicin and on and on.
"X-rays of my lumbar spine"
You should get that report, and post it here. Keep copies of every thing from now on. Have you had any ultrasounds? CRP and/or ESR blood tests?
"arthritis in all my lumbar vertebrae (very odd for a 19 year old in my opinion)"
Absolutely positively correct, we need to discover what is the cause. It is inflammatory, of course, but we need to zero in more. We want to rule out ankylosing spondylitis (aka spondyloarthropathies) with another scan. Then we look at "reactive arthritis" and especially consider any relevant family history.
"nauseous very suddenly & throwing up at least once a day"
The GI tract is lined with immune cells. Immune cells produce inflammation. Do you have allergies/sensitivities (dust, molds, bee stings, perfume)? Skin flushing or itching?
"I saw a GI doctor & he told me it was likely stress"
That's inexcusable. You're lucky they didn't also accuse you of having mental problems, that happens not uncommonly to people who have mystery immune conditions.
'everyone has told me these things are “normal” and “nothing to worry about” '
That's a pathetic of them.
"...something may have clicked. About 6 years ago a single Inguinal Lymph node because swollen & I disregarded it as a cyst."
Your thinking is spot on. Bravo.
"I frequently have enlarged neck lymph nodes"
That makes it generalized (more than one region). We need to get at the cause. But cancer doesn't just come and go - inflammation can.
"Same with my armpits."
The 3rd region.
"I am wondering this this is cause for concern"
Yes, but nothing life threatening. The spine is utmost for now. Is it getting very stiff, as if fusing?
"...bit more aggressive when it comes to getting answers in this from doctors?"
You might have to educate them and point them to the right path. Or by chance get one that understands that it ALL TIES TOGETHER. "Occam's Razor".
So that's for starters - and it's just part of it, Eeqq08. Hopefully, this sets your mind somewhat at ease, but it's only the beginning. I'll be glad to help.
We do want to hopefully get you off the Advil before it ruins your stomach. But yes, we do want other anti-inflammatories instead. We also can try to identify and remove what triggers the inflammation.
"I take turmeric everyday for the past 3 or 4 years because if I don’t my knees and ankles swell and get hot to the touch."
So that's a prime example. There are also ginger, anthocyanins like tart cherry, phytosterols, mint/menthol, capsaicin and on and on.
"X-rays of my lumbar spine"
You should get that report, and post it here. Keep copies of every thing from now on. Have you had any ultrasounds? CRP and/or ESR blood tests?
"arthritis in all my lumbar vertebrae (very odd for a 19 year old in my opinion)"
Absolutely positively correct, we need to discover what is the cause. It is inflammatory, of course, but we need to zero in more. We want to rule out ankylosing spondylitis (aka spondyloarthropathies) with another scan. Then we look at "reactive arthritis" and especially consider any relevant family history.
"nauseous very suddenly & throwing up at least once a day"
The GI tract is lined with immune cells. Immune cells produce inflammation. Do you have allergies/sensitivities (dust, molds, bee stings, perfume)? Skin flushing or itching?
"I saw a GI doctor & he told me it was likely stress"
That's inexcusable. You're lucky they didn't also accuse you of having mental problems, that happens not uncommonly to people who have mystery immune conditions.
'everyone has told me these things are “normal” and “nothing to worry about” '
That's a pathetic of them.
"...something may have clicked. About 6 years ago a single Inguinal Lymph node because swollen & I disregarded it as a cyst."
Your thinking is spot on. Bravo.
"I frequently have enlarged neck lymph nodes"
That makes it generalized (more than one region). We need to get at the cause. But cancer doesn't just come and go - inflammation can.
"Same with my armpits."
The 3rd region.
"I am wondering this this is cause for concern"
Yes, but nothing life threatening. The spine is utmost for now. Is it getting very stiff, as if fusing?
"...bit more aggressive when it comes to getting answers in this from doctors?"
You might have to educate them and point them to the right path. Or by chance get one that understands that it ALL TIES TOGETHER. "Occam's Razor".
So that's for starters - and it's just part of it, Eeqq08. Hopefully, this sets your mind somewhat at ease, but it's only the beginning. I'll be glad to help.
1 Comments
Hi Ken,
I appreciate your well organized and thorough response. All your insight was very helpful! I’ll answer your questions accordingly.
- I have the report and can upload it. I am also working on getting the imaging to compare to a set of X-rays I got last week to compare and get an idea of progression (still waiting on those reports and images. When I got these images, my doctor brought me around to the screen to quickly point out the inflammation easily seen all around my abdomen. I did get a quick look at my lumbar spine, and it looked worse based on memory. I have not gotten a CRP or ESR blood work up done. I did get a CBC work up about two years ago and nothing was out of range, but there were quite a few values that were just on the cusp of “acceptable” weather low or high. Those are as follows.
• BUN levels - Low
• Potassium – Low
• Carbon dioxide – Low
• Protein total – Low
• Globulins – Low
• Albumin/Globulin ratio – High (2.2)
• AST/ALT ratio – High (2.143, found this significant as I am not a heavy drinker)
• RBC – Low (4.07)
• MCH – High (31.2)
• Monocytes, Eosinophils, Basophils – All Low
- Again, none of these values fell completely outside the range that was used by the lab, so i am not saying they are of significance but rather a value to be of note. All values are either on or one or two points away from being out of the range. As this was almost two years it may be of no significance. I did get another blood test done last week and am waiting on results to compare
- No Allergies & no skin flushing or itching
- Yes, my spine is very stiff and has been for a long time. I do recall looking at my previous x-rays and the word Fusing came to mind when I saw them. I will keep this in mind to address when I receive my new images.
- I have never had cats, but I am glad that you brought up Lyme Disease as this almost seems to be a taboo topic in the medical world from my experience of being kind of shut down each time I mention it as a possibility. I do not have Lyme disease in my area BUT at the age of 12 I went on a family trip to Delaware. 2 days after being home my mom had found a tick burrowed into my back and had been there for 3+ days. It was removed and I possibly taken to be tested (she cannot remember if this is definite). At the same time this was happening I began getting fevers & severe knee pain. I was taken to the doctor who sent me home. 4 days later my fever was up to 104 and I couldn’t walk or bend my leg I was admitted to the hospital with osteomyelitis in my knee. Both events were in the same two-week span & no possible connections were entertained or discussed. It wasn’t until last year that I realized how odd these events lining up this way were.
My thinking is that if I did contract Lyme disease, the window between the tick being found and being started on antibiotics for my knee may not have been long enough for enough antibodies to be produced to show up on a test. That is if I was tested at all. Additionally, being on 1 month of IV antibiotics for my knee could have potentially done enough to suppress the b. Burgdorferi bacteria that would have caused a response and symptoms that are typically what cause people to get tested. It is also my understanding that bone infections can be caused by b. Burgdorferi. I have requested my medical records from the hospital regarding this incidence to see if they may have taken samples from my knee to ascertain what bacteria it was caused by. I am not sure if there is much validity to my theory, but it is still thought provoking, nonetheless.
Thanks again for your response. I believe I have found a doctor that is a more “whole picture” doctor that I have an appointment with next week, but it is still helpful to get insight from other individuals.
I appreciate your well organized and thorough response. All your insight was very helpful! I’ll answer your questions accordingly.
- I have the report and can upload it. I am also working on getting the imaging to compare to a set of X-rays I got last week to compare and get an idea of progression (still waiting on those reports and images. When I got these images, my doctor brought me around to the screen to quickly point out the inflammation easily seen all around my abdomen. I did get a quick look at my lumbar spine, and it looked worse based on memory. I have not gotten a CRP or ESR blood work up done. I did get a CBC work up about two years ago and nothing was out of range, but there were quite a few values that were just on the cusp of “acceptable” weather low or high. Those are as follows.
• BUN levels - Low
• Potassium – Low
• Carbon dioxide – Low
• Protein total – Low
• Globulins – Low
• Albumin/Globulin ratio – High (2.2)
• AST/ALT ratio – High (2.143, found this significant as I am not a heavy drinker)
• RBC – Low (4.07)
• MCH – High (31.2)
• Monocytes, Eosinophils, Basophils – All Low
- Again, none of these values fell completely outside the range that was used by the lab, so i am not saying they are of significance but rather a value to be of note. All values are either on or one or two points away from being out of the range. As this was almost two years it may be of no significance. I did get another blood test done last week and am waiting on results to compare
- No Allergies & no skin flushing or itching
- Yes, my spine is very stiff and has been for a long time. I do recall looking at my previous x-rays and the word Fusing came to mind when I saw them. I will keep this in mind to address when I receive my new images.
- I have never had cats, but I am glad that you brought up Lyme Disease as this almost seems to be a taboo topic in the medical world from my experience of being kind of shut down each time I mention it as a possibility. I do not have Lyme disease in my area BUT at the age of 12 I went on a family trip to Delaware. 2 days after being home my mom had found a tick burrowed into my back and had been there for 3+ days. It was removed and I possibly taken to be tested (she cannot remember if this is definite). At the same time this was happening I began getting fevers & severe knee pain. I was taken to the doctor who sent me home. 4 days later my fever was up to 104 and I couldn’t walk or bend my leg I was admitted to the hospital with osteomyelitis in my knee. Both events were in the same two-week span & no possible connections were entertained or discussed. It wasn’t until last year that I realized how odd these events lining up this way were.
My thinking is that if I did contract Lyme disease, the window between the tick being found and being started on antibiotics for my knee may not have been long enough for enough antibodies to be produced to show up on a test. That is if I was tested at all. Additionally, being on 1 month of IV antibiotics for my knee could have potentially done enough to suppress the b. Burgdorferi bacteria that would have caused a response and symptoms that are typically what cause people to get tested. It is also my understanding that bone infections can be caused by b. Burgdorferi. I have requested my medical records from the hospital regarding this incidence to see if they may have taken samples from my knee to ascertain what bacteria it was caused by. I am not sure if there is much validity to my theory, but it is still thought provoking, nonetheless.
Thanks again for your response. I believe I have found a doctor that is a more “whole picture” doctor that I have an appointment with next week, but it is still helpful to get insight from other individuals.
COMMUNITY LEADER
Since your Thursday appt is fast approaching, let's drop the advanced topics for now and focus on the basics. I also don't want to add any stress on you.
Up here in PA, a swollen knee and a tick bite would make any doc think of Lyme. I now see you are in FL, so that's why your docs have been thinking/acting so strangely. They don't know Lyme and maybe are also *afraid* of even saying there might be such a thing as chronic Lyme.
The immediate goal, I think, is to identify the involved pathogens. That means some testing, which btw might give false negatives. A sign like the 'water on the knee' points more to Borreiia, the liver points more to Babesia. But nothing is in stone. Besides, you probably have more than one tick borne.
I'll add that I think you also have a hyperactive immune system, though a lot of docs probably have no conception of such a thing.
Btw, when inguinal nodes are the 1st to enlarge, docs think of STD and then of a wound to leg or foot. But somehow Borrelia has an affinity for the knee, more than for any other large joint. The inguinal nodes are downstream of the knee, so pro-inflammatry molecules inevitably flow through the inguinal nodes. I wouldn't want a doc to wrongly sidetrack things for you with STD testing. (Lyme Disease was first discovered in a cluster of patients in Lyme, Connecticut who had inexplicably swollen knees.)
Here is a list of Lyme doctors, provided by the reputable WebMD (that owns this site Medhelp). They are not automatically kooks, as often Lyme doctors get branded.
https://doctor.webmd.com/providers/condition/lyme-disease/florida
Don't post your town online.
We also have to overcome any doc's possible insistence that the IV Abx would have eradicated any tick borne. That's just not true.
Advanced testing for interleukins etc is premature for now.
-----------------------------
I'll foray just a bit for now into an advanced angle, and say that you have either active, recurring infection --- or else can have just the remnants of the pathogens' dead little bodies, which can provoke an immune response. Like dragging a hyena pelt through a pride of lions, if you follow me. So that's why we can think of managing with antimicrobials and also anti-inflammatories, whether herbal or pharmaceutical.
I'd very much tell any doc about the remarkably effective and repeatable benefit you have from turmeric. If they scoff, that tells you they can't discern between you and the average person.
Up here in PA, a swollen knee and a tick bite would make any doc think of Lyme. I now see you are in FL, so that's why your docs have been thinking/acting so strangely. They don't know Lyme and maybe are also *afraid* of even saying there might be such a thing as chronic Lyme.
The immediate goal, I think, is to identify the involved pathogens. That means some testing, which btw might give false negatives. A sign like the 'water on the knee' points more to Borreiia, the liver points more to Babesia. But nothing is in stone. Besides, you probably have more than one tick borne.
I'll add that I think you also have a hyperactive immune system, though a lot of docs probably have no conception of such a thing.
Btw, when inguinal nodes are the 1st to enlarge, docs think of STD and then of a wound to leg or foot. But somehow Borrelia has an affinity for the knee, more than for any other large joint. The inguinal nodes are downstream of the knee, so pro-inflammatry molecules inevitably flow through the inguinal nodes. I wouldn't want a doc to wrongly sidetrack things for you with STD testing. (Lyme Disease was first discovered in a cluster of patients in Lyme, Connecticut who had inexplicably swollen knees.)
Here is a list of Lyme doctors, provided by the reputable WebMD (that owns this site Medhelp). They are not automatically kooks, as often Lyme doctors get branded.
https://doctor.webmd.com/providers/condition/lyme-disease/florida
Don't post your town online.
We also have to overcome any doc's possible insistence that the IV Abx would have eradicated any tick borne. That's just not true.
Advanced testing for interleukins etc is premature for now.
-----------------------------
I'll foray just a bit for now into an advanced angle, and say that you have either active, recurring infection --- or else can have just the remnants of the pathogens' dead little bodies, which can provoke an immune response. Like dragging a hyena pelt through a pride of lions, if you follow me. So that's why we can think of managing with antimicrobials and also anti-inflammatories, whether herbal or pharmaceutical.
I'd very much tell any doc about the remarkably effective and repeatable benefit you have from turmeric. If they scoff, that tells you they can't discern between you and the average person.
1 Comments
I mean that docs see many patients who are impressed with health food store propaganda, and then have placebo effects. But you have profound, observable benefit from the turmeric - not just suggestibility.
Btw, turmeric does not do me any good. Nor anybody I know personally. But I believe it does for you, which is an important clue.
Btw, turmeric does not do me any good. Nor anybody I know personally. But I believe it does for you, which is an important clue.
COMMUNITY LEADER
"Additionally, could it be possible that if it were lyme disease the increased interleukin activity could be responsible for my increased AST/ALT ratio? Seeing as Interleukins stimulate scar tissue formation. Maybe unrelated but I thought this was an interesting connection as well. "
That's a thought. Yes, the liver did stand out right away as an oddity. Perhaps it's a key feature which will let us zero in through all the labrynth. Let's see, if we websearch
--> AST ALT anemia tick
then we are seeing Babesia, a protozoal intra-RBC parasite. From a quick look, the RBC destruction is autoimmune (AIHA), so then we'd maybe want an LDH blood test. Did no doc do an LDH?
The Method Of Action (MOA) here for elevated liver enzymes is maybe from the liver dealing with lysed RBCs ('hemolytic anemia'). What are your individual ASL & ALT values?
Now look here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330027/
"Screening of patient blood samples for babesiosis using enzymatic assays" 2017
I'd take that study along on the doc visit. They even say:
"These standardized [liver] enzymatic assays can be used to perform high-throughput, large-scale screens of blood and blood products before they are certified safe for transfusion." Meanwhile, blood smears might give false negatives. There is also PCR testing.
Was your IV Abx doxycycline? That doesn't seem so effective against Babesia. First line seems to be azithromycin or clindamycin. I dunno for sure. (But doxy might be good against Ehrlichia, so that tends against you having Ehrlichia -- if you indeed had received doxy.)
Eeqq08, wouldn't it be fantastic if the right Abx might end your longtime suffering?
So at this moment, I'm thinking you'd want LDH + a smear (microscope looking for RBCs with a protozoa inside). If negative (false negative?) then unless there's a compelling alternative Dx, then still press for the PCR.
Btw, if you feel like your head is going to explode, then you know you are doing this right :)
That's a thought. Yes, the liver did stand out right away as an oddity. Perhaps it's a key feature which will let us zero in through all the labrynth. Let's see, if we websearch
--> AST ALT anemia tick
then we are seeing Babesia, a protozoal intra-RBC parasite. From a quick look, the RBC destruction is autoimmune (AIHA), so then we'd maybe want an LDH blood test. Did no doc do an LDH?
The Method Of Action (MOA) here for elevated liver enzymes is maybe from the liver dealing with lysed RBCs ('hemolytic anemia'). What are your individual ASL & ALT values?
Now look here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330027/
"Screening of patient blood samples for babesiosis using enzymatic assays" 2017
I'd take that study along on the doc visit. They even say:
"These standardized [liver] enzymatic assays can be used to perform high-throughput, large-scale screens of blood and blood products before they are certified safe for transfusion." Meanwhile, blood smears might give false negatives. There is also PCR testing.
Was your IV Abx doxycycline? That doesn't seem so effective against Babesia. First line seems to be azithromycin or clindamycin. I dunno for sure. (But doxy might be good against Ehrlichia, so that tends against you having Ehrlichia -- if you indeed had received doxy.)
Eeqq08, wouldn't it be fantastic if the right Abx might end your longtime suffering?
So at this moment, I'm thinking you'd want LDH + a smear (microscope looking for RBCs with a protozoa inside). If negative (false negative?) then unless there's a compelling alternative Dx, then still press for the PCR.
Btw, if you feel like your head is going to explode, then you know you are doing this right :)
COMMUNITY LEADER
"Trial and error will be ultra important."
Docs hardly ever do logical problem solving, like we're doing. They mostly do pattern matching od signs and tests, then reach a Dx which leads to the 'standard of care' Tx. Such as 'try this drug for 6 weeks then come back'. Hopefully, that works out well; but if not then we have to do the logical problem solving, and present a cohesive case to the doc and try to get them to agree.
Docs hardly ever do logical problem solving, like we're doing. They mostly do pattern matching od signs and tests, then reach a Dx which leads to the 'standard of care' Tx. Such as 'try this drug for 6 weeks then come back'. Hopefully, that works out well; but if not then we have to do the logical problem solving, and present a cohesive case to the doc and try to get them to agree.
COMMUNITY LEADER
"How exciting to see the conclusions I drew now being explained with real research!"
Oh, perfect! That's the best attitude to have. Yes, it is actually exciting to be born out that way. Your own mind will be your best asset to conquer your condition. There is usually no magical specialist around the next corner with the magical test and the magical pill. Yet many many hope that for years. Instead, you have to be your own ship captain.
"nursing school"
Unsolicited advice: structure the path of that to lead eventually to being an NP. Otherwise you'll get bored and frustrated being overruled by absent minded docs all the time, as an RN.
"I am also very active and very conscious of what I consume to keep myself healthy"
Great. But keep in the back of your mind that it's not uncommon for young healthy exercising women to inexplicably get Chronic Fatigue Syndrome - which disease is probably the archetype of mystery immune dysfunction.
"explain the inflammation seen in the Xray images"
Maybe thickened gut wall, like this (rather than interstitial edema):
https://www.radiologymasterclass.co.uk/gallery/abdo/abdominal_xray/ulcerative_colitis
If it is the gut wall, then we look at increased intestinal permeability aka leaky gut - as a driver of inflammation.
"But are there ways to suppress the cytokine overactivity that Lyme would cause?"
Yes, but it is very tricky and takes a LOT of self observation - which a doc can't do for you. Also, it becomes trickier if it is multi-factorial. But you have had unexpectedly great success with the turmeric, so that's a very good start.
"I know Circumin is known to suppress IL-1"
It's great that you had already looked that up. So I'd think first to identify other IL-1 antagonists. Maybe beta-sitosterol. Please let me know what you compile.
Then there are IL-6 and COX1-2, and TNF and 5-LOX among others. The common idea is 'cascade' but I think of it more like looking down at the Mississippi Delta from miles above - very complicated and interlocking. Trial and error will be ultra important.
IL-10 is an *anti* inflammatory molecule produced by muscle during exercise. How cool is that.
"Additionally, would it be beneficial to get a cytokine panel..."
Yes, eventually. And during a flare if possible.
"Let’s hope she’s excited about my new incite rather than overwhelmed haha!"
True :)
"I know you are not a professional in this topic so if you cannot answer these questions I understand"
I did answer :)
"still fun to discuss nonetheless!"
Yep, it's absolutely enjoyable in its own right. Kind of like Sherlock Holmes.
"I'd be happy to post an update after I go over the multiple above mentioned items on Thursday!"
Good. I'd prepare a written outline going in, and take notes while there to take home. Did you say what kind of doc she is?
Naturally, the more you know going in, the less time you waste on beginner questions. But while some docs appreciate an informed patient, a few resent that.
Also, let's strike while the iron is hot when possible. If this gets put aside for too long, I'll forget the details. There is no chart to refer to :)
Oh, perfect! That's the best attitude to have. Yes, it is actually exciting to be born out that way. Your own mind will be your best asset to conquer your condition. There is usually no magical specialist around the next corner with the magical test and the magical pill. Yet many many hope that for years. Instead, you have to be your own ship captain.
"nursing school"
Unsolicited advice: structure the path of that to lead eventually to being an NP. Otherwise you'll get bored and frustrated being overruled by absent minded docs all the time, as an RN.
"I am also very active and very conscious of what I consume to keep myself healthy"
Great. But keep in the back of your mind that it's not uncommon for young healthy exercising women to inexplicably get Chronic Fatigue Syndrome - which disease is probably the archetype of mystery immune dysfunction.
"explain the inflammation seen in the Xray images"
Maybe thickened gut wall, like this (rather than interstitial edema):
https://www.radiologymasterclass.co.uk/gallery/abdo/abdominal_xray/ulcerative_colitis
If it is the gut wall, then we look at increased intestinal permeability aka leaky gut - as a driver of inflammation.
"But are there ways to suppress the cytokine overactivity that Lyme would cause?"
Yes, but it is very tricky and takes a LOT of self observation - which a doc can't do for you. Also, it becomes trickier if it is multi-factorial. But you have had unexpectedly great success with the turmeric, so that's a very good start.
"I know Circumin is known to suppress IL-1"
It's great that you had already looked that up. So I'd think first to identify other IL-1 antagonists. Maybe beta-sitosterol. Please let me know what you compile.
Then there are IL-6 and COX1-2, and TNF and 5-LOX among others. The common idea is 'cascade' but I think of it more like looking down at the Mississippi Delta from miles above - very complicated and interlocking. Trial and error will be ultra important.
IL-10 is an *anti* inflammatory molecule produced by muscle during exercise. How cool is that.
"Additionally, would it be beneficial to get a cytokine panel..."
Yes, eventually. And during a flare if possible.
"Let’s hope she’s excited about my new incite rather than overwhelmed haha!"
True :)
"I know you are not a professional in this topic so if you cannot answer these questions I understand"
I did answer :)
"still fun to discuss nonetheless!"
Yep, it's absolutely enjoyable in its own right. Kind of like Sherlock Holmes.
"I'd be happy to post an update after I go over the multiple above mentioned items on Thursday!"
Good. I'd prepare a written outline going in, and take notes while there to take home. Did you say what kind of doc she is?
Naturally, the more you know going in, the less time you waste on beginner questions. But while some docs appreciate an informed patient, a few resent that.
Also, let's strike while the iron is hot when possible. If this gets put aside for too long, I'll forget the details. There is no chart to refer to :)
COMMUNITY LEADER
So much to consider. E.g., let's posit that the IV Abx for the bone infection doesn't affect the parasite Babesia which could have come along as a tick borne coinfection.
COMMUNITY LEADER
There are various things in your narrative that make me think you might possibly have hyperactive immunity. If so, that makes you have a somewhat atypical case of chronic 'Lyme' , which will make some/most docs more skeptical and dismissive.
Any Fx of immune dysfunction?
"When I got these images, my doctor brought me around to the screen to quickly point out the inflammation easily seen all around my abdomen."
Can you describe that further? That might be driving chronic "immune activation" and exacerbate everything.
Btw, have you had many rounds of oral Abx? As opposed to the long IV course. Thinking here of damage to gut flora.
An occult infection (e.g. knee) wouldn't normally show on a CBC. Joints are places where chronic tickborne pathogens can hide out ("evade immune surveillance"). But I'd want a CBC right when the knee swells a lot. Also I'd want CRP and ESR when you have flares of bad fatigue, malaise, etc. I'd ask for scripts to have on hand to use when needed - but probably a doc won't do that on first visit.
Any Fx of immune dysfunction?
"When I got these images, my doctor brought me around to the screen to quickly point out the inflammation easily seen all around my abdomen."
Can you describe that further? That might be driving chronic "immune activation" and exacerbate everything.
Btw, have you had many rounds of oral Abx? As opposed to the long IV course. Thinking here of damage to gut flora.
An occult infection (e.g. knee) wouldn't normally show on a CBC. Joints are places where chronic tickborne pathogens can hide out ("evade immune surveillance"). But I'd want a CBC right when the knee swells a lot. Also I'd want CRP and ESR when you have flares of bad fatigue, malaise, etc. I'd ask for scripts to have on hand to use when needed - but probably a doc won't do that on first visit.
COMMUNITY LEADER
Be aware of osteomyelitis causing marrow suppression and therefor cytopenias. As in your CBC. Or there can be inflammatory induced peripheral lysis of blood cells.
You probably won't find a cure, per se. So we're looking at effective management. Which can probably produce a great quality of life benefit. I mention this now not to be negative, but because you can try anti-inflammatory approaches on your own. Such as the turmeric, but more. Btw, there are methods to supposedly increase intestinal absorption of the curcumin - some might actually work. Some day down the road you might get an Rx for Plaquenil/hydroxychloroquine or similar, but why wait?
You probably won't find a cure, per se. So we're looking at effective management. Which can probably produce a great quality of life benefit. I mention this now not to be negative, but because you can try anti-inflammatory approaches on your own. Such as the turmeric, but more. Btw, there are methods to supposedly increase intestinal absorption of the curcumin - some might actually work. Some day down the road you might get an Rx for Plaquenil/hydroxychloroquine or similar, but why wait?
COMMUNITY LEADER
This is going quite well, and quickly :) I think the case is solved, except for the almost unlimited further details.
You're in med school to help yourself? That's great. So we can go to a higher level right away in this discussion.
This one is free full text.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005031/
"The Impact of Tick-Borne Diseases on the Bone" It's a review.
Almost as important as the content is that it's so recent. IOW, the knowledge isn't so prevalent among clinicians yet. So some docs will be resistant and stodgy. Btw, I don't know the impact factor of that journal.
As you probably know, we don't have to confine our thinking to only Borrelia. There are a slew of other tick borne pathogens. I'd suggest that all future websearches that you do routinely include "tick" and also "chronic osteomyelitis".
Life stress is a factor then for you, but not as the primary cause as they are wrongly saying. Instead, it's about stress' influence on weakening your immunity -- as a contributing factor to flare ups.
After your 1st post I'd been thinking you need a rheumy, but no... you need an Infectious Disease doc - and hopefully one who is "Lyme Literate". (Let's use "Lyme" as a catchall that includes all tick bornes.) Or you might find any doc who has had Lyme personally.
"...almost seems to be a taboo topic in the medical world from my experience of being kind of shut down each time I mention it as a possibility"
Yes, medicine is very unfortunately now *politicized* in a way. Some day, watch the "Under Our Skin" documentary to see their point of view.
"Both events were in the same two-week span & no possible connections were entertained or discussed. It wasn’t until last year that I realized how odd these events lining up this way were."
Yep, we want Occam's Razor aka Law of Parsimony. Most specialists see only their specialty. But there are Functional Medicine docs, who are supposed to see the totality. That's not a board certified specialty, more of a type of Dx approach. Most are Internists, but can be anything.
[More later.]
You're in med school to help yourself? That's great. So we can go to a higher level right away in this discussion.
This one is free full text.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005031/
"The Impact of Tick-Borne Diseases on the Bone" It's a review.
Almost as important as the content is that it's so recent. IOW, the knowledge isn't so prevalent among clinicians yet. So some docs will be resistant and stodgy. Btw, I don't know the impact factor of that journal.
As you probably know, we don't have to confine our thinking to only Borrelia. There are a slew of other tick borne pathogens. I'd suggest that all future websearches that you do routinely include "tick" and also "chronic osteomyelitis".
Life stress is a factor then for you, but not as the primary cause as they are wrongly saying. Instead, it's about stress' influence on weakening your immunity -- as a contributing factor to flare ups.
After your 1st post I'd been thinking you need a rheumy, but no... you need an Infectious Disease doc - and hopefully one who is "Lyme Literate". (Let's use "Lyme" as a catchall that includes all tick bornes.) Or you might find any doc who has had Lyme personally.
"...almost seems to be a taboo topic in the medical world from my experience of being kind of shut down each time I mention it as a possibility"
Yes, medicine is very unfortunately now *politicized* in a way. Some day, watch the "Under Our Skin" documentary to see their point of view.
"Both events were in the same two-week span & no possible connections were entertained or discussed. It wasn’t until last year that I realized how odd these events lining up this way were."
Yep, we want Occam's Razor aka Law of Parsimony. Most specialists see only their specialty. But there are Functional Medicine docs, who are supposed to see the totality. That's not a board certified specialty, more of a type of Dx approach. Most are Internists, but can be anything.
[More later.]
2 Comments
Thank you for attaching that review! When I looked into the possible connection of these events I recall being able to find little to nothing relating them online. I was only able to make the connection cross referencing two books I picked up in my schools library: one on tick-borne diseases and one on diseases of the skeletal system. I only made the connection based on the understanding that osteomyelitis can be caused by some of the same bacteria’s that can be transmitted by ticks. How exciting to see the conclusions I drew now being explained with real research!
I’m not in med school, But I am finishing up a couple of prerequisites to apply for nursing school. I actually received my first bachelors degree in hospitality and found that to be quite a waste of money. I’m thinking of furthering my education more down the line but thought a nursing degree would be the quickest and easiest way for me to get started after already going through college once.
Nothing sticks out to me in the past as having any immune dysfunction, but I am also very active and very conscious of what I consume to keep myself healthy. I will be able to further explain the inflammation seen in the Xray images when we sit down to go over and review them this Thursday (we will also be going over a couple of blood tests). I’ve also tried to steer away from Abx use whenever possible, I don’t believe I’ve taken any in the past few years.
This may be a question for a professional on the topic, but in the event that it is lyme disease I understand there is no cure per se. But are there ways to suppress the cytokine overactivity that Lyme would cause? Specifically, the multiple different classes of interleukins? I know Circumin is known to suppress IL-1 but what about the others? Additionally, would it be beneficial to get a cytokine panel to get an idea of if an elevation of these is potentially what’s causing the inflammation and specifically which ones?
I will bring all of this up to my doctor when I see her this week. Let’s hope she’s excited about my new incite rather than overwhelmed haha! I know you are not a professional in this topic so if you cannot answer these questions I understand, still fun to discuss nonetheless!
I'd be happy to post an update after I go over the multiple above mentioned items on Thursday!
I’m not in med school, But I am finishing up a couple of prerequisites to apply for nursing school. I actually received my first bachelors degree in hospitality and found that to be quite a waste of money. I’m thinking of furthering my education more down the line but thought a nursing degree would be the quickest and easiest way for me to get started after already going through college once.
Nothing sticks out to me in the past as having any immune dysfunction, but I am also very active and very conscious of what I consume to keep myself healthy. I will be able to further explain the inflammation seen in the Xray images when we sit down to go over and review them this Thursday (we will also be going over a couple of blood tests). I’ve also tried to steer away from Abx use whenever possible, I don’t believe I’ve taken any in the past few years.
This may be a question for a professional on the topic, but in the event that it is lyme disease I understand there is no cure per se. But are there ways to suppress the cytokine overactivity that Lyme would cause? Specifically, the multiple different classes of interleukins? I know Circumin is known to suppress IL-1 but what about the others? Additionally, would it be beneficial to get a cytokine panel to get an idea of if an elevation of these is potentially what’s causing the inflammation and specifically which ones?
I will bring all of this up to my doctor when I see her this week. Let’s hope she’s excited about my new incite rather than overwhelmed haha! I know you are not a professional in this topic so if you cannot answer these questions I understand, still fun to discuss nonetheless!
I'd be happy to post an update after I go over the multiple above mentioned items on Thursday!
Additionally, could it be possible that if it were lyme disease the increased interleukin activity could be responsible for my increased AST/ALT ratio? Seeing as Interleukins stimulate scar tissue formation. Maybe unrelated but I thought this was an interesting connection as well.
Have an Answer?
You are reading content posted in the Leukemia and Lymphoma Community
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
