Pushing on lymph nodes

31 F. No medical hx. No meds.
I’ve had upper left shoulder back pain for a few years now. It wakes me up out of my sleep sometimes and I literally just roll around in pain until ibuprofen kicks in so I can fall back asleep. Sometimes it keeps me up for hours. The pain is an crampy ache, like I desperately need my back cracked. When this pain occurs I notice the lymph node on the back of my neck to the left gets big and hard. It’s in between the size of a dime and Nickel. When the pain goes away, the lymph node goes down in size but is still palpable.
Initially, I brought up this lymph node to my PCP. Had an ultrasound and neck CT done with contrast that showed I had multiple other lymph nodes in my neck that were large but not of concerning enough size. I had that specific lymph node biopsied and they got more fat than actual lymph node but the small sample they got seemed normal. Labs seemed normal outside of a mildly elevated ESR. They recommended me getting another biopsy if the lymph node was still there in 3 months. Well, three months later it was still there obviously since it’s been there for years but didn’t grow in size so the doctor didn’t want to do another biopsy and said it would probably go away in time.
It’s never gone away. The pain still comes and goes and I have no idea what to do about it. Curious to see if anyone has had a similar issue? Ibuprofen 800 helps a little and so does icy hot. I was prescribed flexeril but all it does is make me sleepy and does absolutely nothing for the back pain. In fact , I feel like it makes it worse. I feel like my pain is dismissed and I’m miserable when the pain starts.
Any advice ?

Today I was finally prescribed Levo, but while I saw my doctor I wanted him to have a look at my throat/neck. After over a month of hypo symptoms I’m suddenly having hyper symptoms again for the past week, on top of that I’ve developed pain in my throat where my thyroid is as well as my lymph nodes feel very swollen and sore. I also have some sort of hard small lump on the back of my neck on the left side. My doctor didn’t examine me at all, just saying that one can fluctuate between hyper and hypo and that my neck is just having inflammation. I’m just worried about the pain since my throat just feels weird and sore when I move my head certain ways or when I cough or sneeze or yawn. I also have a clicking feeling when I swallow sometimes. Should I maybe get it checked out somewhere else or am I overreacting and this is super normal?

It first started with a small zit on the tip of the ear lobe, it had a black head that spread and inflamed the skin around the cartilage filling it with some kind of liquid and then lymph nodes got swollen around the ear and neck. The infection looked black, and within a weak made a crust that made it unrecognizable that was an insect bite. That is when I went to the doctors and they thought it was viral. That is why I was misdiagnosed so many years.
Since then I get this painful small blisters in the hands, some under the skin like the first picture, some on the surface. around joints. They are dark in appearance with black head and every time they appear they last around 1 - 2 weeks and when they leave the skin gets dry and flaky. But this does not end here, as soon as they disappear the nerve pain starts and I het really achy in the area for a long time.
I really believe that what I am looking at is the infection that havocs my body for such a long time (3yrs). I will not get into details but I do have neurological symptoms similar to MS, ALS.
I would like to know if you have these as well with Lyme.
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Hi, I'm new here, recently got TC back on April 15, got surgery on April 23rd.
3 days after Orchiectomy I started experiencing butt pain that would radiate up to my lower back and down to my legs, a week after they removed my lefty I did a CT Scan, while waiting for my turn to be scanned I was in constant butt pain(sitting on a hard ass monoblock made it worse) that sometimes radiates up my lower back. The pain wasn't severe, I would give it a 2 or 3/10.
5 days later, scan did not find any enlarged abdominal and inguinal lymph nodes*cue relief* , it did find a fatty liver and some endplate bone spurs on my lumbar spine(which I think might have caused my back pain not sure) though lol. I went to have my blood tested and my tumor markers significantly went down 2 weeks after orchi. Pre-Orchi it was AFP: 262, HCG: 3,130, LDH: 227; Post-Orchi 2 weeks later it became: AFP: 23.89, HCG: <5, LDH: 180.0. Still waiting for the biopsy results.
up until now I still get butt and lower back pain, I have poor posture when sitting so it makes it worse(probably how I got the lower back pain ig). I still get anxious about it but my relatives keeps telling me to calm down and worrying about it might make the situation worse than it really is. Will have my follow up check up with my uro when we get the biopsy results. Right now I calm myself by praying, watching YT vids, playing Baldur's Gate 3. I can't play sports yet because of the surgical wound which sucks.

To preface, I used to take Doxy every day for months during Covid for acne, but eventually stopped due to not feeling comfortable relying on an antibiotic so much- even when taken with probiotics. I’ve been able to keep my acne at bay with Spironolactone and a tailored skin routine.
But then last week for the first time ever I broke out into a rosacea flare up around my eyes and cheeks (ocular rosacea). I went to my dermatologist and she prescribed me Doxy 50mg for two weeks. After it seemed like the rosacea was getting worse they upped me to 200 mg a day. I took the two pills along with food, water, and a probiotic and had no stomach pain or discomfort. When I woke up the next day I felt relatively fine until two hours later when I touched my skin and it hurt.
I went to work and as the hours passed my entire body was riddled with aches and pains- I was shivering from feeling cold (to the point my nails were turning blue) and had to leave early to go to a doctor. The doctor did a Flu test and it came back negative, my throat looks fine and the lymph nodes weren’t swollen. He said that the main culprit is most likely the Doxy and to stop taking it to see if I improve.
And while the Doxy isn’t out of my system yet, I still feel terrible. Everything aches and pains as if I have a flu without the other flu symptoms (stomach pain, cough, etc.) My skin feels super sensitive to the touch, my neck and back are stiff and it’s gotten to the point where doing simple tasks such as eating and showering was a chore because I feel so rigid and weak.
My doctor explained that even though I’ve tolerated Doxy in the past, my immune system has changed over the two years and may have developed a sensitivity to it. Saying that my immune system is reacting to the Doxy and thinks there’s an infection so it’s reacting accordingly (hence the aches and pains). I only took the Doxy for 3 days before stopping use.
I just wanted to know if this is a common experience by others, and if so, how long after stopping Doxy did it take for the severe pains and chills to subside? Also, just as a heads up to people who may be starting the medication that it’s a possible side effect. It was helping the rosacea flare up, but the pain is not worth it. I’m going to stay off it and keep track of how I feel to decide whether the Doxy is the culprit or not.

About a month ago, I (38M) was diagnosed with a rare, slow growing neuroendocrine tumor (carcinoid) in my appendix which was discovered during an appendectomy. We have no data to suggest that 100% of the tumor was not removed during the appendectomy: the margins were clear and from a statistical perspective, the majority of people with a tumor the size of mine (~1cm) are cured by appendectomy alone.
However, there were some other findings that cloud the picture. The primary tumor was not growing quickly and had a Ki-67 index of 2%, which is compatible with grade 1 (good for me). Despite this, the tumor had almost broken through the appendix wall, showed signs of perineural invasion, mesoappendix invasion and lymphovascular invasion. (To be honest, only the last thing means much to me but I know it’s bad). Because of these attributes, the tumor was assigned a primary tumor stage of T3. Only one lymph node was dissected but no tumor cells were found there (N0) and there was no distant metastasis (M0). All three of these stages indicate an overall cancer stage group of IIA. My case was reviewed by the tumor board at the GI center at the local med school and they recommended further surgery to prevent possible metastasis of any cancer cells that remain. This surgery, known formally as a right hemicolectomy would remove the ascending portion of my colon. My rectum and anus would be unaffected and I would (in a sense) still use the toilet normally. From the literature, many people report more diarrhea, looser stools and sometimes fecal incontinence after the procedure, but it seems peoples experiences can vary greatly. I will add that the idea of having these challenges as a single person scares me quite a bit. Pooping my pants on a date seems very non-ideal and I’d really like to find someone to spend my life with.
The other compounding factor is that while the 5 year survival rate for neuroendocrine appendiceal tumors is luckily quite high (90% or so if there is only local spread) there is no approved radiation therapy or chemotherapy. My scientific understanding of this is that since the growth rate of these tumors is slow compared to other cancers, they grow at similar rates to normal healthy tissue. This makes cytotoxic chemotherapies that target rapidly dividing cells ineffective: the only treatment that would kill the tumor, would kill you just as fast. There are some therapies that can inhibit tumor growth (somatostatin I think?), but the tumors never shrink in size. Since there is no chance to completely kill the tumor, one appears to be left with the unavoidable outcome of living the rest of your life with cancer if surgery doesn’t work. And significantly, the survival rates for metastatic neuroendocrine tumors appear to be far less rosy than if they are caught early. I woke up the other night and sat straight up in bed to catch my breath thinking about that.
I am really wrestling with the idea that the surgeons are recommending a procedure, which will undoubtedly degrade my quality of life to some degree, and from a statistical point of view, is not expected to find any tumor cells. It seems that the oncologists view the surgery as insurance for me (and frankly for them). I get it, but…like…come on. Maybe I’m being crazy to even be thinking about this, given that if the tumor were to spread, I’m kind of screwed?
Some questions:

• did you have a right colectomy? How has your quality of life changed? Was it a permanent change or only temporary?
• did you have a different cancer but faced a similar dilemma ?
• how did you think about trading quality of life for “peace of mind”?
• did age affect your decision?

Thanks for reading. This community has been so helpful to me recently. I wish I could hug you all. You are the best.

Has anybody experienced a recurrence of eyelid retraction AFTER thyroidectomy?
Background: Dx 1/21. TED symptoms seemed to hit one eye at the time. Began with puffiness and watering, pain in the back of the eyes with upward gaze, very minor proptosis, eyelid retraction, then lid lag. Eye symptoms seemed to stabilize several months before my total thyroidectomy in 6/22. No antibodies detected by early 2023 and by mod mid 2023 I had no visible symptoms.
A few weeks ago, I noticed my lid retraction in my right eye returned. It seems to fluctuate. I have been under increased stress lately (I broke up with someone and while I was in the ER for a bad stomach flu, a CT was performed and I now need a follow-up CT to check on an enlarged pericardial lymph node.
Has anybody else had their TED symptoms return this long after thyroidectomy and lack of antibodies? (I’m going to ask for another round of antibody tests to confirm they haven’t returned)
I took a selfie and compared to a selfie pre-dx and the difference in my eyes is disturbing. I also feel like there’s some drooping so I want to get tested for Myasthenia Gravis, although I don’t think I have other symptoms.
I’m annoyed because my ophthalmologist was pretty dismissive the last time I talked about symptoms, but that was a year ago (during my last visit, 6 months ago, I wasn’t experiencing symptoms, but I was during the previous visit). He said my physical symptoms weren’t bad enough to operate on, but I’m so upset by how I look that I’m seriously thinking of going to a plastic surgeon who specializes in eyelid surgery.
Any advice or similar stories of TED symptoms coming back after surgery/remission would be helpful.

I recently had surgery to remove an intermediate grade T2N1 mucoepidermoid carcinoma of the parotid gland. I was verbally told that the margins were clear in some areas and close in areas near the nerves. The one positive lymph node on the neck (which was removed along with a dozen other nodes) had 1 mm of cancer cells. My ENT referred me to radiation oncology for radiation treatment.
But he also scheduled me to meet with the tumor board to discuss my case, which has me concerned. Why would I need to meet with a tumor board? How common is it for a case to get reviewed by a tumor board?

I am going in for my breast biopsy this coming Monday and ny nerves are haywire! I have been attempting to educate myself as much as possible, however there is so much contradictory information that I don't know what to believe. Posting my breast MRI results to see if anyone can help make sense of it.
FINDINGS:
Right Breast There is a 4 mm focus of enhancement greater than background enhancement in the right breast at 9 o'clock, 11 cm from the nipple demonstrating mixed kinetics including washout kinetics (axial postcontrast 2, image 89). There is no correlating finding on the mammogram performed the same day. There is no other suspicious enhancement in the right breast. There are no suspiciously enlarged right axillary or internal mammary chain lymph nodes.
*side note; I have heterogeneously dense breast and they are a very large 38H. I was told the Mammogram may not show much dut to how dense the tissue is, which they saw nothing until the MRI.

I’m sorry, my research has hit a standstill and I need to ask - does anyone here with RA or similar conditions know of an association of it and Heberden’s nodes? I’ve been in full research mode since my appointment earlier this week before I go for my blood testing and EKG for suspected RA, but there was something that wasn’t fitting. I have a lump on one of my knuckles, it’s on the side where there’s already that normal sort of slope of the knuckle, near the fingertip. It’s very small, and doesn’t move when pushed around as it seems to be hard and part of the joint itself. It’s definitely not a rheumatoid nodule and looks like more like the pictures that came up for Heberden’s nodes, and matches the description of them.
My doctor felt it during the exam and never mentioned concern about anything aside from RA, but I’m confused now reading that it’s primarily (potentially solely?) from osteoarthritis. But I’m 27, have never really done anything that would put serious wear and tear on any joints let alone my hands, and my arthritis started several years ago but the lump I think appeared in the last year.
I’m just curious if anyone maybe has personal insight, or would be able to point me in the right direction of where to look. Thank you in advance!
And I want to explicitly state a boundary here: I’m not looking for nor are interested in any judgement, insults, telling me I should unalive myself, etc. Hate to have to say it, but. My recent vent post I posted here and in ChronicIllness didn’t offer me the safe space to talk about my fears I was looking for, though maybe my mistake was looking for that on Reddit.

Has anyone had 2 very different ultrasound results 2 months apart? Background I had my first US outside of USA and second one 2 months later in NY. My Endo when she saw the first result was 100% on you need to get a biopsy but since my US was outside the country, said I needed to get another one before she could schedule me for FNA for insurance reasons. Now after new result, no need for biopsy just repeat US 1 yr later. I'm loosing my mind. Please help if you have any suggestions or have experienced a similar situation.
Size is different , shape is different, margin is different. Second one seems to have less info like missing vascularity info. The radiology department was wayyy overbooked today. Could this be a rush job.. has left me more confused and frustrated.
First ultrasound result (March '24): Both lobes of thyroid and isthmus are normal in size. The right lobe of the thyroid measures 4.7 x 1.8 x 1.3cms. An ill defined taller than wider (3) iso-echoic (1) spongiform (0) smoothly marginated (0) lesion measuring 9.3 x 8.3 x 5.9mm is seen in the subcapsular region of superior pole of right lobe of thyroid. It shows no echogenic foci on colour doppler, it shows peripheral as well as intra lesional vascularity. No evidence of extra thyroidal invasion seen.
The left lobe of the thyroid measures 4.8 x 1.6 x 1.5cms. A subtle ill defined lesion measuring 1.5 x 1.0 x 0.9cm is seen in mid pole of left lobe of thyroid in subcapsular location. It is abutting the medial margins of left CCA. It is taller than wider (3) smoothly marginated (0) solid (2) iso - hyperechoic (1) lesion with no echogenic foci. No evidence of extra thyroidal invasion seen. On colour doppler, it shows significant intralesional vascularity.
Multiple right sided cervical lymphnodes seen with 3mm MSAD and preserved cortex and oval shape. No evidence of necrosis / calcification seen. The isthmus measures 3mm. Both submandibular and parotid glands appear normal. Neck vessels on both sides appear normal. CONCLUSION : SOL right lobe (TR4). Suggest FU with clinical correlation. SOL left lobe (TR-4). Suggest HPE / clinical correlation.
Second result (May '24): INDICATION: Multiple thyroid nodules. TECHNIQUE: Ultrasound of the thyroid gland is performed. COMPARISON: None available. FINDINGS: ISTHMUS: 0.2 cm in thickness.
RIGHT THYROID LOBE: -Size: 5.1 x 1.3 x 2 cm -Echotexture: Homogeneous
Right Nodule 1: 0.9 x 0.6 x 1 cm in the upper pole. -Composition: Solid or almost completely solid (2 points) -Echogenicity: Hyperechoic or isoechoic (1 point) -Shape: Wider-than-tall (0 points) -Margin: Smooth (0 points) -Echogenic foci: None or large comet-tail artifacts (0 points) -TI-RADS for this nodule: TR3 (3 points) - Mildly suspicious. FNA if > or = 2.5 cm. Follow if > or = 1.5 cm.
Small anechoic cysts, not suspicious.
LEFT THYROID LOBE: -Size: 5.3 x 1.3 x 2 cm -Echotexture: Homogeneous
Left Nodule 1: 1.2 x 0.9 x 1.7 cm in the mid pole. -Composition: Solid or almost completely solid (2 points) -Echogenicity: Hyperechoic or isoechoic (1 point) -Shape: Wider-than-tall (0 points) -Margin: Smooth (0 points) -Echogenic foci: None or large comet-tail artifacts (0 points) -TI-RADS for this nodule: TR3 (3 points) - Mildly suspicious. FNA if > or = 2.5 cm. Follow if > or = 1.5 cm.
LYMPH NODES: No cervical lymphadenopathy.
IMPRESSION: Bilateral TR-3 thyroid nodules. Recommend ultrasound follow-up in 1 year to ensure stability.

Hey All,
Happy to have found this sub. Seems like a group that has either been there, or is going through the same thing, so it's helpful to know you're all out there!
My mom had uterine cancer about 6 years ago, and had it all surgically removed (uterus, ovaries, etc)...well the cancer is back and has spread to her lymph nodes, so is considered stage 4 and "metastatic adenocarcinoma with tumor necrosis"
I quit my job and plan on being with her as much as I possibly can. We start chemo and immunotherapy on Monday at MD ANDERSON in Indianapolis, IN. Although I haven't heard a proper prognosis from her doctor, I'm of course fearing the worst...
So...any tips or tricks? I know that sounds silly, but I just really don't know what to expect, and I'm a bundle of nerves, anxiety, sadness, grief, and everything else you can imagine.
For those of you that lost someone to cancer...especially a parent...what is something you wish you would have done before their time on this earth ended (sorry if that's a trigger to ask...I just don't know how to react right now, and am looking for guidance.)
Thanks for hearing my story. Love and light to you all.

I (23 F, 195lbs) have been having some odd symptoms for about a week. It started out with heart palpitations, which I blamed on the stress I’ve been under in the last few weeks. I had to put a pet down and was going through finals and graduation. I apologize for my terrible storytelling skills below.
Starting around last Friday, I began experiencing coughing (with mucus in throat), dull aching in my left arm, left side of chest, and back, and some indigestion. Mostly the feeling of acid in my throat or tightness. Sometimes it’s just a mild discomfort, sometimes it’s straight up pain.
The worst was on Sunday, when I had 5/10 pain in the back of my neck that made it somewhat hard to drive. I’ve also had some weakness in my left arm and some light-headedness/mild headache. I have tried drinking more water, thinking it could be dehydration (which I do have a problem with) but it has not helped.
It should be noted that last Friday, I was out in the cold rain and wind for about 2 hours. It was bad enough that my feet (which were in sandals) hurt terribly by the end of it. I did notice that my aching, coughing, and mucus picked up after that.
I should also note that I have had bronchitis once, COVID twice, and have PCOS. I also hurt my left arm a couple months ago. Nothing serious. Just pulled a muscle in my shoulder. Additionally, I did receive a DEPO (birth control) shot in my left shoulder on Tuesday. It sent immediate pain through my arm and shoulder, and is still tender today.
Mucinex DM has been somewhat helpful in relieving my cough and getting rid of mucus, but it only works for a few hours. Cracking my back, shoulder, and chest also offers some minor relief. Occasionally, I find myself needing to take a deep breath, which causes some ache in my back, but also some relief.
Not sure if it’s related, but I’ve also found myself feeling fuller faster. I can usually put away a good amount of food. But lately I’ve been done after only a fraction of that (but not to the point that I’m not getting enough).
Interestingly, my heart palpitations have decreased today. I’ve only had a couple and they’ve been gentle flutters. And it just so happens to be the same day that I’ve stopped drinking some lavender lemonade that I bought.
I went to an urgent care center on Sunday. They performed an EKG and found that my heart is beating fine, if not beating a little fast due to my nervousness. They prescribed some hydroxyzine for stress, but I’ve been hesitant to take it only because I feel relaxed most of the time. I’ve also been referred to a cardiologist but have yet to get a call back from them to make an appointment.
For some minor notes, I have noticed swelling in my left armpit (I assume to be a lymph node) a couple times over the last few months. It is not swollen now, but I do have a pea-sized lump in the left crook of my neck.
I also got my hair braided recently and the weight of it is new for me. I understand it may be affecting my headaches.
I would just like any advice possible. Most of my family says I’m fine and I really would like to believe them. I also don’t want to waste a visit to urgent care (again) or to the ER. And in case anyone wonders, I do not smoke (though I live with smokers), drink, or do drugs. I also used to bike 5 miles a day until about last month, when I started slacking.

On Tuesday I (26F) came down with 103 F fever, body aches and chills, congestion, swollen lymph nodes and tonsils, and sore throat/painful swallowing. I’m a speech pathologist and work in a skilled nursing facility. All of my patients are vulnerable elderly people, or people on ventilators/with tracheostomies, or adults with severe disabilities, who have just stepped down from hospital care.
Tuesday morning I sent my boss (52M) an email about my symptoms and stayed home that day; he replied with only a 👍. Wednesday I woke up and didn’t feel any better after a day of rest and a few doses of NyQuil so I went to urgent care which is where I was diagnosed with strep throat. I was told to stay home a couple more days and take 2 antibiotics. I emailed my boss the doctors note and a brief summary and he immediately called me and the convo went something like this:
Boss: Sadie, you have only worked here for 2 months. Having strep throat is not a reasonable ailment to miss work for 3 days. I will expect to see you in the facility tomorrow morning.
Me: I still have a 102 fever and can barely swallow water without excruciating pain. I am not putting my patients at risk and defying a doctors note.
Boss: It is very unprofessional to miss work in this setting for personal illness and really shows your age. You are completing 1 to 1 sessions with your patients and thus do not have to worry about getting people sick. And if someone were to get sick then wouldn’t it be better for them to get it here where they can receive all the care they need? My wife is an OT and she would never pull this.
Me: Respectfully your wife’s disregard for her patients and coworkers health and wellbeing is not my problem.
Boss: Are you saying my wife doesn’t respect her patients and coworkers because she has a good work ethic?
Me: If she would knowingly come to work with strep throat or such a high fever, then yes that’s what I’m saying.
Boss: Send me an email when you are ready to resume your responsibilities and we will discuss next steps.
Obviously that isn’t an exact transcript, but I’ve been replaying it in my head again and again like an anxious wreck since then.
AITA? Is he right, am I really just being an inexperienced baby about having strep throat and should have powered through work anyway? Regardless I’ve already used this time to respond to 2 recruiters desperate to fill nearby positions. My field is very high in demand so I see no reason to stick around a place like this. I’m trying really hard to understand my boss’s POV, which I perceive as extremely careless and grubby, not to mention unwise considering my position was vacant for 11 months before I was hired b/c there were no applicants…

For context, I have been really itchy for the past two weeks. I am 22/F and It's honestly all I've been thinking about. I do have sensitive skin but the last time this happened was around 6 years ago and it turned out I had developed an allergy to the soap I was using and now I only use soap-free wash.
Also to add to the context I have three swollen lymph nodes on the left side of my neck, largest being 2.5cm. These have been there for over a year now, I've had an ultrasound and biopsy on the lymph nodes and doctors and specialists have agreed there is no problem with them in regard to lymphoma. When I started itching I thought it might be lymphoma due to symptoms but doctors seem to think not.
I haven't changed what i'm eating, all my bloods are fine except I have low sodium. I've had an ultrasound on my liver, spleen and thyroid and all look good. So i'm absolutely stumped on what it could be.
Can anyone please help or provide advise?
Any comments are helpful!

For context, I have been really itchy for the past two weeks. I am 22/F and It's honestly all I've been thinking about. I do have sensitive skin but the last time this happened was around 6 years ago and it turned out I had developed an allergy to the soap I was using and now I only use soap-free wash.
Also to add to the context I have three swollen lymph nodes on the left side of my neck, largest being 2.5cm. These have been there for over a year now, I've had an ultrasound and biopsy on the lymph nodes and doctors and specialists have agreed there is no problem with them in regard to lymphoma. When I started itching I thought it might be lymphoma due to symptoms but doctors seem to think not.
I haven't changed what i'm eating, all my bloods are fine except I have low sodium. I've had an ultrasound on my liver, spleen and thyroid and all look good. So i'm absolutely stumped on what it could be.
Can anyone please help or provide advise?
Any comments are helpful!

For a bit over a year my(19M) lymph nodes on my neck swell very randomly with no other sytoms than them swelling. It all started around a year and a half ago when they swelled and I was diagnozed with mono. But when the mono went away the lymph nodes didnt completely. Since then they are semi swollen and they enlarge and shrink randomly almost daily. Normally its about a centimeter but visible and it goes up to 2 or sm around there I am not sure. For about a week now it has been a bit discomforting and there are no symptoms of other sicknesses, i almost never lose weight and have a normal apetite, what might be the cause. Should I get a biopsy and fully checked out?

Hello,
I have been visiting this sub from last 8 weeks or so and have read every single post. It was very helpful for me and made me feel less lonely. I want to document my journey here, to help me process what happened and in case it helps someone.
It all started in October of 2022. I had no symptoms of cancer ( like heavy bleeding, abnormal discharges, pelvic/back) pain etc at any time during 1.5 years that I dealt with it. I was diagnosed with a polyp during infertility treatment which turned out to have atypical hyperplasia. I was immediately put on Megace by my general gynecologist and was referred to gyn-onc. My regular gyn did an additional biopsy (this time it was D and C) one month after I was put on Megace. I was still waiting for gyn-onc appt at that time and it came back as grade 1 endometrioid adenocarcinoma. I wanted to try fertility sparing route, MRI showed no myometrial invasion and endometrial thickness was 8mm. So continued on Megace for 4 more months (total of 6 months). Follow up biopsy still showed grade1 EC. Gyn-onc suggested hysterectomy. We decided to get second/third opinions.
We consulted two different doctors ( including one from Stanford) and both suggested Mirena IUD implant and continuing Megace. We did that for 6 months and in December 2023, biopsy showed no cancer and ultrasound showed endometrial thickness of 4mm. Doctor wanted one more clear biopsy in March 2024 (3 months after December 2023 biopsy) before releasing me back to fertility doctor.
March 2024 biopsy came back as atypical hyperplasia and cannot completey exclude EC given my history. Gyn-onc suggested to continue the medication and get another biopsy in June. I requested an ultrasound for my peace of mind. Ultrasound showed an irregular endometrium with no clear borders with 32mm thickness with increasing vascularity ! It was unbelievable. I had no symptoms or abnormal bleeding or anything that would indicate a 32mm endometrium. Gyn-onc suggested it must be a mistake by ultrasound tech and ordered an MRI. MRI was scheduled one month after ultrasound and it showed thickened, ill defined endometrium invading into myometrium and more than 50% on the left side of the uterus. At that point, my primary oncologist and second opinion oncologist agreed that we will have to proceed with hysterectomy. Latest biopsy specimens were also sent for second opinion to Stanford and they called EC grade1 ( upgraded from atypical hyperplasia).
I underwent hysterectomy on May 7th. Got the pathology report today. It says scattered focal endometrioid adenocarcinoma grade1, no myometrial invasion and lymph nodes clear. The endometrial thickness varies from 2mm to 6mm !
I have no idea why ultrasound and MRI showed ill defined endometrium with thickness of 32mm and 26mm ! There were not even back to back, they were one month apart ! Doctors simply have no explanation. I could feel gyn-onc feeling kind of bad delivering the news. He said the amount of cancer was underwhelming !
Anyway 1.5 year efforts to save my uterus so that I can carry our baby has reached an end. I am relieved with the results and getting off this roller-coaster with my health intact. But also somewhere it is lurking in my mind that may be I could have gotten away without surgery and proceeded to fertility treatment if I had waited till june and not asked for an ultrasound. I don't know. It will take some time for me to resolve these feelings.
l wish all of you a healthy and fulfilling life ahead.
Edited to add, I was 38 at the time of diagnosis and 40 now.

I recently posted about an unknown illness I've been facing for years that's been causing a chronic cough and has begun to cause almost daily shortness of breath along with chest burning around the time I eat or lie down. I strongly believe the cause behind my symptoms is GERD. I had been going to respiratory doctors this entire time, but when I noticed a swollen lymph node I decided to go to an Ears Nose Throat doctor and they told me all of my symptoms are likely due to acid coming up since I'm not showing any signs of throat cancer.
They prescribed me an antacid, and a pill for gas which I'm not 100% sure if they're working (I've been feeling slightly better aside from right now as I have the worst stomach pain ever after having a bad meal).
They offered to stick a fiber optic cable down my throat to check my insides with a camera (I'm in Bangkok I'm not sure if this is normal everywhere else lol), which I chickened out because I thought it would be extremely uncomfortable, and I have a horrible gag reflex.
What should my next steps be? Should I go back and get a PPI? I believe this is the common treatment for GERD. Should I try to face my fears and get the fiber optic cable down my throat? Should I try to get an endoscopy, or is there some other test I should be focusing on to make sure I'm not at the Barrett's Esophagus level since I've been experiencing these issues for years now?
Any help and words of guidance would mean the world to me in this horrible time in my life lol

Hello, everyone! It's been a while since I posted anything or even visited the sub. I do not visit the sub anymore as I collected all the information I needed long ago and staying on the sub only led to more thinking about flox. Focusing on other areas of life has been a great life hack for me! I have done a lot of positive things in the past half a year - I am starting my own business, been meeting new people and making a lot of new friends. Flox has changed me for the better.
I want to preface this by saying that I was probably the only person (or almost only as I've met maybe 1 or 2 other people on Reddit) who claimed flares from CoQ10. It actually flared me quite a lot — sometimes I could handle 100mg and sometimes even 30mg would lead to terrible pain. It was frightening to be one of the rarest cases in a pool of already rare cases, so, naturally, I tracked reactions to supplements extremely attentively (u/vadroqvertical won’t let me lie about that) and I have tried a lot (my cupboard is full of supplements — I spent around €3,500 on them in the span of 1.5 years). I will list reactions to supplements and the approximate timeline of when it happened:
— First of all, CoQ10/Ubiquinol flared me not so much 1 month out (tried 100mg ubiquinol multiple times) but it got worse as time went on to the point that April 2023 I could not even take 30mg without great pain. I tried it 1, 2, 3, 4, 5, 6, 8, 16 months out all without luck with varying doses flaring me to different extents. I will outline the reasons for it below;
— Vitamin E flared me a lot 2, 4, 6 and 8 months out. Never tried again. Tried 200-400 IU at a time. Due to poor GSH regeneration through Glutathione Reductase dependent upon B2 and NADPH;
— Benfothiamine flared me as well (doses 150mg-300mg/day). This is due to high sulphite and blockage of complex IV of the Electron Transport Chain in the mitochondria the reason for I will explain further. Thiamine is easily broken down by sulphite in the body and it is broken down into sulphite as well, which causes a negative loop reaction in people with high sulphite levels. Benfothiamine also caused me a severe allergic reaction (extreme anxiety and itching) that gladly did not require hospitalisation but was extremely scary and scarred me psychologically (likely high sulfocysteine activated NMDA receptors);
— Vitamin B6 increased my neuropathy when I got it. Likely due to poor B2 functional status. The problem I was also deficient in B6 and its supplementation led to great improvements in sleep quality once I could tolerate it. Note B6 is easily destroyed by sulphite just like B1;
— Riboflavin flared me (tried at 100mg, doses under 10mg never flared me). This is likely due to unmatched NADPH supply due to high sulphite load in the body (speculative);
— Astaxanthin greatly improved my physical health at 5-6 months out (proving that the core of my issues was solely ROS) but it caused reductive stress (NADH accumulation), which also caused pain, albeit the pain was a different kind and asta caused worsening neuropathy and visual snow. It accumulates in fat tissue, so stopping it was nice with ROS coming to a balance at about 10-12 days after discontinuation (after a loading dose of 36mg/daily for 3.5 weeks) but ROS then came back after it went out of the body further. I did not retry astaxanthin as I realised it caused me reductive stress and neurological issues;
— NAC helped me a damn lot. It was the best antioxidant for me. The problem is it depleted my molybdenum and copper and started giving me allergic reactions (low molybdenum + copper as well as blocked complex IV will lead to way higher sulphite generated from NAC);
— Did not feel much from vitamin D. I live in a very sunny country and tested at 51 (ref. Range 30+) without any supplements;
— Magnesium helped me a lot. #1 supplement;
— Calcium did not help me much in the beginning, actually, caused me heart palpitations. Was fine taking it after a few months;
— Potassium was a good supplement. I took 800mg/day for a while and it supported my muscle health;
— Important: vitamin B5 made me feel a lot better. It took my ROS down like crazy — I could feel normal muscles again, it removed my oxalate pain completely, too but for only a short while like 3-4h.
I have tried many more supplements that were phyto-supplements and such and none of them really helped me beside maybe some placebo effects. Some made me feel worse and were not worth it at all. I did not try anything mood-changing as I was not interested in it. To note, GABA supplement made me feel a little euphoric at first.
It is very relevant that I have been oxalate dumping since 27 Dec. 2023. The description of the experience can be found here: https://www.reddit.com/floxies/comments/1by0uh0/comment/kyma718/
Now, to the real question: why did CoQ10 flare me even at high nutrient status (just after flox). I have to stress that flares from CoQ10 were much less at the beginning of flox likely due to better nutrient status (it went from extremely terrible to slightly more extremely terrible while 6 months out it went from ‘eh’ to terrible).

1. First, I have to say that NAC made me worse long-term. How? Over a long period of time I was taking it and was not watching my copper levels (NAC increases metallothionein and causes poor copper absorption) and molybdenum levels (NAC raises generation of sulfite and it needs molybdenum to be detoxified). Some NAC formulations have molybdenum in them but I was not lucky to get one of those and, due to lack of knowledge, did not supplement any molybdenum. The result was high sulphite and from that high ROS (with a combo of benfo which further increased sulphite it caused me peripheral neuropathy at 5 months). Sulphite causes Fenton reactions when complex IV gets blocked up. H2S (a signalling molecule and a vasodilator) also needs to be detoxified by a CoQ-10 dependent enzyme and turned later into sulphite and then sulphate by molybdenum and complex IV (dependent on copper) and if it is not detoxified, it causes a complex IV blockage and starts Fenton reactions as well as electron leakage during production of ATP, causing ROS. This causes a negative feedback loop that was described in the linked article as follows:

«This can be explained as follows:
1) hydrogen sulfide inhibition of complex IV generates superoxide in the respiratory chain, which becomes hydrogen peroxide,
2) hydrogen sulfide reduces ferric iron to ferrous iron, which makes it release from storage in ferritin,
3) this increases Fenton reactions between free iron and hydrogen peroxide, which generate more dangerous reactive oxygen species like the hydroxyl radical,
4) all of this deplete glutathione,
5) since a major purpose of the trans-sulfuration pathway is to provide enough cysteine to make glutathione, glutathione depletion hyperactivates the trans-sulfuration pathway, leading to more cysteine availability, the excess of which is catabolized to sulfite by alternative reactions that do not produce hydrogen sulfide and therefore do not require CoQ10.»

1. In the article linked below, you will see that CoQ-10 protects against reactive oxygen species mainly due to improving hydrogen sulphide clearance (H2S). Therefore, CoQ-10 deficiency did not cause much ROS in complexes I and II but mainly produced issues in Complex III (where sulphite detoxification starts) and complex IV (where the last electrons are delivered during the sulphite-sulphate reaction). Excerpt: «In human cells with CoQ10 synthesis defects from the same study, CoQ10 protected against reactive oxygen species, but suppressing the enzyme that uses CoQ10 to clear hydrogen sulfide abolished this effect. This shows that the reactive oxygen species were coming from poor hydrogen sulfide clearance.»

Considering this, and oh my god, finding this article was like god sent it to me: my CoQ10 flares were coming from poor hydrogen sulphide clearance. At that point there were multiple reasons this could be happening:

1. Cellular CoQ-10 deficiency;
   
2. Manganese toxicity;
   
3. Copper deficiency;
   
4. Molybdenum deficiency;
   
5. SUOX (enzyme which converts sulphite to sulphate) or another genetic impairment;
   
6. Blockage of complex IV by something else.
   

I checked my molybdenum and copper transporting genes, SUOX using DBSNP and my AncestryDNA.txt file, and they were all good (Yes, I know Ancestry does not do a full genomic profile but it still had the main SNPs for that.). I also checked my manganese transporter genes and seemed I was homozygous for an important one but fine with others. It is really hard to estimate how that might affect you IRL, perhaps that would require a real genetic counsellor (or lots of hours spent ruminating again). I also did not think I had any genetic issue since I was very very healthy all my life and had 0 pain or health issues before flox occurred (I have extremely healthy young looking parents that drink, smoke and do whatever they want and have 0 consequences to their health as well).
I took some tests, for example: Genova NutrEval at ~6 months out, full nutrient blood test panel at ~11 months out (abstained for 35 days from any supplements at all, even vitamins and tested literally everything, paid around €1,200) and my CoQ10 levels at both of those occurrences were at 1 & 1.07 in absence of supplementation with ref. Range 0.8-1.4, so it was definitely not low. That way I eliminated #1 and #5. While I was not entirely sure whether genetic issues had to do anything with it, I decided to pretend like they didn’t, since I had to try out other solutions before jumping to the most complex one. I took a lot of molybdenum, so molybdenum deficiency was not at the table for me. In this way I was left with #2, #3 and #6. In the full blood panel, my manganese was slightly high (20.1 with ref. Range <~18) and the SNP people were talking about that caused them manganese toxicity was homozygous for me, so I definitely considered it but manganese when supplemented made me a feel a lot better, actually (mentally, not physically), so I was also likely deficient in it. For now, I just avoid it in supplemental doses but I do not avoid foods containing it. Besides, I do not have iron overload genes that could contribute to manganese toxicity.
I could not take copper because it would lead to high ROS immediately (due to complex IV blockage the reasons for which I will outline further). Considering manganese was likely deficient and not superfluous, I discarded reason #2 and reason #3 could not be fixed by copper, so it was definitely not only copper deficiency but either another factor or another factor coupled with copper deficiency. I was stuck for a long time until I found another article from the same author about B12 and B9 helping to detoxify oxalate. As I said before all this explanation, I have been oxalate dumping throughout the whole process (already 4 months). I should note I was oxalate dumping even before I got floxed (I likely had oxalate overload to my appendix surgery — this is proven by inflamed mesenteric lymph nodes confirmed by 3 MRIs — Sally Norton has the same case of over-absorption in her book) and that is how I actually got the E. Coli they gave me Cipro for (oxalate crystals create a good environment for it in the urinary tract lol) and how I got floxed (I went full circle, lmao). When I was floxed, I was not oxalate dumping for at least a year likely because my body was not in the state to handle the dumping process but it was still affecting me as I will outline further. First of all, I want to say that biotin actually promoted dumping for me as said in the article and not relieved it like it is said in Sally Norton’s book (I am not sure if there is a genetic variation to this). The proposed mechanism of oxalate detoxification in the article is as follows:
«Recall my proposed two-step detoxification process:

1. Pyruvate carboxylase [biotin-dependent] converts oxalate to formate.
   
2. Formate is joined to tetrahydrofolate to enter the methylation cycle, be used for the synthesis of purines or DNA, or be converted to carbon dioxide and exhaled in the breath.»
   

This are also very important words: «There may be more regulation layered on top of this to prevent excessive formate accumulation. It would certainly be preferable to have oxalate crystals cause pain or disrupt the skin than to have formate accumulate beyond the capacity to clear it.» This is why I felt best when dumping. Could eat anything, drink beer, even smoked weed once without issue. Another time though I got too brave, smoked a lot of weed and got a very bad ‘relapse’ but recovered quickly from it. The next morning when using a towel after a shower I had the same pain I used to have 2.5 months out from Cipro (which was extremely bad and took me back 14 months in memories) while before I smoked weed that second time I had almost 0 tendon pain in my daily life apart from oxalate [Here I thought maybe I and DrHungry share similar issues then? He also had an extreme (same in intensity relatively to his flox journey) flare from weed and is also using a lot of sulphur-based antioxidants still. Could such weed flares be related to complex IV dysfunction and/or impaired sulphite clearance?]. In either case, I felt best when dumping, probably because my body was able to regulate formate accumulation and ROS production greatly reduced at those times.
I was sitting outside with my parents and their friends, researching my flox issue when I read these lines: «Formate accumulation is the principle mechanism of methanol toxicity. Part of its toxicity is driven by inhibiting cytochrome oxidase, complex IV of the mitochondrial respiratory chain, which would inhibit the clearance of sulfite and hydrogen sulfide and block the production of ATP.» It finally clicked. It was honestly one of the best moments in my life when I realised. I made the connection between great improvement from B5, formate accumulation, issues with copper supplementation, general ROS improvement and oxalate everything together. Suddenly, my whole flox journey became crystal clear to me.
B5 is mainly used in the body to create Coenzyme A. An intermediate molecule in the production of CoA is called 4’-phosphopantethine and is used in the enzyme 10-methyltetrahydrofolate dehydrogenase (high formate will pair with THF and form 10-MTHF in the attempt of the body to detoxify formate). This enzyme converts 10-MTHF back to THF and creates NADPH in the process which is used by Glutathione Reductase to regenerate Glutathione. Hence, high-dose B5 led to a lot of those reactions occurring and me feeling a big relief from ROS AND OXALATE, so oxalate is indeed detoxified into formate by biotin-dependent pyruvate carboxylase.
Okay, so theory is very interesting but what is theory if it has no proof? When I read it, I realised I finally cracked my flox but I had to get real proof.
Just a few weeks before this, I drank some wine and got nerve damage (likely from high sulphites in it, again, duh — while this was a terrible experience, it played a role in me getting closer to the solution of my issues). Beer caused me no issues, could drink 10 or more bottles in one sitting, eat a lot of rice with no issue. Before, I had only numb hands and top of feet. After the wine, I had burning up to the knee and burning in palms and behind my shoulders. I got fed up with this, I just decided to methylate the fuck out of my nerves and eat copper not in supplements but from calamari (very high in copper but low in vit A, so no toxicity risk like from liver). At that time, I was dumping and my ROS was not too high. I started consuming around 200g protein per day, eating a lot of copper 3-4mg/day and my nerves really healed a lot. To the point they even became normal after 3-4 days. My vision became brighter, it was absolutely crazy. I was also supplementing 150mg molybdenum/day. After a week of that, though, I started getting ROS back and it was very bad ROS, like almost a year ago when I had low molybdenum and copper from a lot of NAC use. That confirmed my suspicion that my issue was indeed sulphite. Eating almost anything caused ROS for me, dumping stopped since the body had no free reducing agents (NADPH) to support sulphate-producing enzymes (oxalate is transported on sulphate transporters, so it literally could not drive out of the cell because it had no car lol). As you understand, high ROS prevents a lot of enzymes from working and here it causes, as you have probably understood, a negative feedback loop.
So, back to the proof. Since I realised that my issue is probably formate, I just decided to take high-dose B5 again (did not add any high dose B2, B1 or other B vitamins, just took my usual B complex with food). It really helped me a lot, again. I felt almost normal. Then, it caused me some pain but I felt how I was getting better and the next day I took it in the day, then in the evening I ate around 80g carbs and took double the dose of B complex (my B complex has low doses: 10mg B1, 10mg B2, 25mg B3, 20mg B5, 5mg B6, 100mcg B7, 100mcg B9, 50mcg B12) instead of adding a lot of B5 and boom, no pain and oxalate dumping restarted quite more strongly than it even used to be before megadosing protein. So I was in pain for at least 2 weeks dying from ROS and then 2 days of B5 and suddenly I was normal again? It felt like paradise. The next day, I went out with my friends. I was a little nervous since we were going to eat out and we ordered 600g of carbonara (the portions here were huge there). I ate it all at once with 2x my light B complex and guess what happened? NO PAIN, just oxalate dumping. I finally realised that I was right and detoxified formate unloaded my complex IV, allowed sulphate transporters to be created, reduced ROS production from food and suddenly I felt like a normal human being (except the dumping part). I recently retried CoQ10 — no flare. Likely before formate got recreated a lot because I was dumping a lot (if you read my comment, you will understand).
I am not megadosing B5 right now but just stuck to 80-100mg B5 per day, so 4x my light B complex as my B6 tolerance improved a lot. Why I am not megadosing B5 is because oxalate likely blocks conversion of vitamin B2 into its active forms as I at ~11 months out when I did full-testing in the absence of supplementation 35 pre-testing had high molybdenum, iodine, (almost above the ref. Range (113 with ref. Range <120) selenium and very high B2 even though I was cellularly deficient according to Genova NutrEval (at 356 with ref. Range <295).
Hence, we can understand what happened to me from the beginning:

1. Oxalate overload led to formate overload as oxalate is converted to formate through the action of biotin-dependent pyruvate carboxylase;
   
2. Formate overload led to complex IV blockage, high ROS and high sulphite, which also leads to high ROS and also leads to complex IV blockage (negative feedback loop);
   
3. High sulphite destroys vitamins B1&B6 as said in the beginning, which caused endogenous production of oxalate to skyrocket (you can read about this if you google, this information is very available);
   
4. Hence sulphate transporters also got impaired, oxalate detoxification in the form of physical crystals also halted, which led to even higher overload;
   
5. This led to higher formate, this led to even more ROS.
   

Mega-dosing B vitamins and especially B5 and B9 led to formate detoxification and the ability of my body to detoxify oxalate. This improved me a lot and it definitely feels like it will inevitably lead to my recovery. I feel good now, I still have some remaining neuropathy but it’s minimal and I know what to avoid to not make it worse and how to improve it quickly if I need to. I have no OS from beer, coffee or food. Also, I am dumping a lot right now. You can ask me all kinds of questions that you want and I will try to answer them to my best ability since I know what it is like to be floxed and I will help anyone who is in the same situation. I am only 22 years old and this experience led to me rethinking my whole life. I plan to become an extremely rich person to be able to fund biochemical research in the future and will focus specifically on floxed individuals and I will help floxed people first. I will try to reach my goals as fast as possible, I promise.
I hope this post does not get removed by moderators. If there is anything to moderate, change, or add, I will be happy to do that. All I say here is very attentively selected and fact-checked either from external sources or personal experience. I do not lie and have no motivation to do so. I am only trying to share my knowledge and to help realise others flox is not unbeatable and can be understood and solved — it all depends on individual factors.
Linked articles:
Manganese Toxicity Is a CoQ10 Deficiency
https://chrismasterjohnphd.substack.com/p/manganese-toxicity-is-a-coq10-deficiency
CoQ10 Deficiency Is Sulfur Toxicity
https://chrismasterjohnphd.substa2ck.com/p/coq10-deficiency-is-sulfur-toxicity?utm_source=profile&utm_medium=reader
10-Formyltetrahydrofolate dehydrogenase
https://lpi.oregonstate.edu/mic/vitamins/pantothenic-acid#formyltetrahydrofolate-dehydrogenase
Can Biotin Help Detoxify Oxalate?
https://chrismasterjohnphd.substack.com/p/can-biotin-help-detoxify-oxalate
Can B12 and Folate Help Detoxify Oxalate?
https://chrismasterjohnphd.substack.com/p/can-b12-and-folate-help-detoxify

I was diagnosed with PTC in Dec of 22. I had a TT and central neck dissection in March of 23. The cancer spread to 3 of my 4 parathyroids, had some vascular invasion, some lymph nodes and my laryngeal nerve. I was treated with RAI in June of 23 and then discovered I had Metastatic nodules in both lungs that would not take up the RAI. I went from being told that I had the "best scenario" as far as cancer goes, to being told I would never be cancer free, but I'd just have to learn to accept my "new normal" of living with cancer. I am blessed to be asymptomatic at this time. I met with my oncologist yesterday after my 6 month follow up CTs and blood work to be told that the cancer has not progressed at all and my tumor marker is the lowest it's ever been! My point in this post, other than to share my joy and good news, is to remind others that even if you're given a "simple" diagnosis, it may not always stay "simple" for each person. I wish it did. Instead of making blanket statements such as, "oh, PTC is simple to deal with and then get on with your life", maybe consider there are always exceptions to the "rule". Cancer sucks ass. Period. May we all fight our best fight, for as long as possible. ❤️