Maria Fisher46 said:It’s pretty clear you’re dealing with a much more complex disorder here, which isn't really something we can untangle just through an online forum. However, if there hasn't been any meaningful improvement after such a prolonged course of appropriate antibiotic treatment, then the diagnosis of Lyme disease itself needs a serious second look. We also need to re-evaluate whether continuing this specific antibiotic regimen is actually the right move; if it hasn't worked by now, it’s unlikely to suddenly start working, and honestly, pushing forward could potentially do more harm than good.
Regarding that discrepancy between the EnGene results and the MR findings, I should clarify that while EnGene can point toward the existence of nerve damage, it lacks the capacity to pinpoint the actual cause behind that damage. On the flip side, an MR can visualize certain lesions or issues, but it certainly won't catch everything.
Thanks so much for the response!
Well... there *are* improvements, technically. My joints don't ache anymore, except when the weather shifts. That burning sensation in my forearms is almost entirely gone, too. My infectious disease specialist finally managed to bring back some reflexes—like a patellar reflex on the right side—though the left side is still sluggish or non-existent. So, things are moving in the right direction, but I'm still stuck with these finger vibrations, hand weakness, and a whole laundry list of other symptoms... 🙂 I have a neurology appointment coming up on March 5th, and I'm wondering if I should proactively ask for specific tests? I know they probably won't just volunteer them without me prompting them... I was thinking about suggesting a B12 panel and a general vitamin check... Any advice?
First off, hello everyone. Since I see quite a few medical professionals in this group, I’d like to politely ask for a little guidance. For nearly a year now, I’ve been dealing with joint and muscle pain (lately, it's even hit my elbows), stinging sensations (for months, I’ve had this burning feeling at the top of my spine and the back of my neck!), sharp pains under my ribs, and so on. In the midst of all this, I accidentally discovered through testing that my IgG for Borrelia burgdorferi came back borderline positive. I had a Western Blot done, though I turned down an ELISA because my doctors warned me about its unreliability. I've been on a course of antibiotics for two months now because there are still other symptoms I won't list right here... The working diagnosis is suspected Lyme disease, but that isn't my main focus right now. I really want to concentrate on this:
Here is what’s actually bothering me. I’ve undergone MRIs of my brain, as well as my cervical and lumbar spine, because my EMG showed moderate to severe neurogenic lesions from C4 to C7, and also in the lumbar and sacral regions. Now I'm stuck on a question: how can the nerves show up as damaged on an EMG when the MRIs are completely normal? I mean, not a single pathological change was detected anywhere. Could anyone provide some insight into this? Is it possible the doctors missed something again (like the Lyme, perhaps, which might have moved into a chronic phase since I never developed that characteristic bullseye rash...)? What would you advise? I would be incredibly grateful for any help, as I am honestly going to lose my mind waiting for my neurology appointment; nothing makes sense to me. How can there be nerve damage if nothing is compressing them? My blood sugar is fine, I don't have any STIs, and I'm at a loss as to what else I should even be testing for. I'm only 22 years old, and I am so unsettled by this that I feel like I'm losing my grip on reality—I just can't deal with people experimenting on me when nobody actually knows what is happening. And when those burning and tearing sensations hit me, I feel completely incapacitated...
To add a bit more context—my SSEP for the vagus and tibial nerves came back normal! My CBC was perfect. Thyroid looks okay, though my FT4 is slightly low; it shouldn't be under 10, and mine is sitting at about 9.84, which doesn't seem like a huge deal... TSH and FT3 are normal. My CRP is consistently slightly elevated, around 15-20... ANA and other rheumatic markers are negative... even hepatitis tests came back negative... Abdominal ultrasound was perfect. I'm starting to feel like I'm not thinking straight, and I'm beginning to doubt if Lyme is the only thing at play here... Sorry for the long post, but I truly feel like a lab rat.
So, I’ve actually gone ahead and marked the specific areas here just so you can see exactly which parts of my body are being hit the hardest. An X-ray showed some major changes in my temporomandibular joints—some kind of luxation. Apparently, it was all because of a wisdom tooth, which they ended up performing an alveolotomy on two months later... Honestly, I’m tapped out; that’s really everything I can recall from my various tests. Someone, please, help me!!! 🙂
I’ve already posted this once, but I’m honestly terrified that I’ll just be met with total silence here.
To give you the full picture, I’ve been struggling for months now with constant wrist pain, numbness in my hands, and these muscle spasms in my legs. I’m sitting right on the edge of a Lyme disease diagnosis and am currently undergoing treatment for it—but let’s set that aside for a moment...
Here’s the crux of the issue: I went ahead and got MRIs of my brain, my cervical spine, and my lumbar spine. And wouldn't you know it—everything came back perfectly clear. Even my SSEP tests for the vagus and tibial nerves showed nothing out of the ordinary.
What is absolutely driving me insane while I wait for my neurology appointment is this massive contradiction. How on earth can an EMG—you know, that whole ordeal with the needles—detect moderate to severe neurogenic lesions in the C5-C7 area and down in my lumbar spine (which is the whole reason I was sent for the SSEP and MRI in the first place), yet the MRI shows absolutely nothing wrong? What in the world is happening? How can there be nerve damage present when the imaging is clean and my spine looks textbook perfect?! 🙂 I suppose I should just say—maybe I missed something. My blood sugar is fine, my thyroid is normal. Please, I’m begging you, don't move this thread to the "test results" section; nobody ever actually looks at the posts over there, and I really need to talk about this for my own peace of mind...
"Using the endoscope, we entered the postbulbar segment of the duodenum, which appears normal, just like the bulb itself. The gastric mucosa shows coarser folds. The cardia and esophagus appear normal."
What exactly does "coarser folds" mean? Should I be worried? This report is from last month—I actually stumbled upon it by accident while digging through some old files... To be honest, I haven't dealt with gastritis in quite a while, maybe five years now? Any insight? 🤦
My apologies for the messy quoting; honestly, I’m a bit of a tech dinosaur, which is pretty embarrassing considering I was born back in '92. 👎 So, here's the situation: how can I actually go about switching? Back in April, I transferred my care from a doctor in Milwaukee over to one in Indianapolis. Am I allowed to make another change right now, or am I stuck waiting until the new year kicks in? The thing is, she just isn't listening to me at all... she's completely tuning me out.
Nicholas Myers? I see you edited my post, but I’m honestly a bit lost on why. What exactly crossed the line? I looked it over and couldn't tell if anything had actually been changed. Just trying to wrap my head around it so I know how to play it next time 🙂 ps, you mentioned you have a medical background—what’s your take on all this? Sorry if I'm being a nuisance, I guess I'm just looking to get a little more informed 🙂
I don't know what to think anymore... Back when I was three months along, I dealt with some serious food poisoning. Nobody ever thought to send me in for blood work to check for bacteria, and then just a couple of weeks later, I ended up with reactive arthritis. Not a single thing was actually investigated... I guess it’s up to God to decide my fate, and honestly, I’m just waiting for things to take a turn for the worse. But hey, maybe it really is all just in my head 🙂 Though, I’m pretty convinced some kind of bacteria snuck its way in, because it feels too strange to develop reactive arthritis just a month after food poisoning, especially since a tooth started acting up at the exact same time—it’s like everything decided to go wrong all at once! 😵
I’m switching doctors as soon as I possibly can... Look, I’m no medical professional, but in my book, it’s just irresponsible to have someone vomiting for a week straight and not send them to test for Salmonella, Shigella, or something else... Or even with a dental infection; a bacterium could have crawled in there looking for a way in. That isn't hypochondria, it's just common sense. If it hurts, it hurts. That’s actually why I went to see a psychiatrist. Maybe it is psychological. Regardless, you should run the tests first before telling someone, "Just get over it, you're young"
melloworca6 said:Look, I get that you're pissed at the doctor, but please, spare us the "she's an idiot" comments. We don't really do that kind of talk on this forum. 😉
I'm not telling you to go fighting with the Normabel crowd; I was just wondering if things settle down after you take a sedative. I figured mine out myself—that throat tightness I get when my body temperature swings wildly (like stepping out from AC into the summer heat) is actually my thyroid acting up. A sedative would help that. So, I'm asking: does the feeling stop? If it stops, you're looking at panic attacks or anxiety. If it doesn't, it might be worth asking for a referral to a neurologist.
Listen, getting your vitamin and mineral levels checked is expensive, and it won't necessarily get you sent off to see specialists. My immunologist recently had me test for B6 and B12, but otherwise, why would a general practitioner order those tests out of nowhere? Same goes for potassium or sodium; I only got those checked because I felt absolutely terrible. It’s tough to get a referral for those specific tests, but it's not impossible. 🙂 Besides, once you start taking multivitamins, those issues often taper off. For instance, my eyelid and cheek used to twitch constantly, but after two or three weeks on vitamins, everything calmed right down.
My bad, sorry, I'm just worked up, bear with me. 🙂 Anyway, I'll try actually taking those multivitamins. I've only been on B12 for two weeks, and I realize all of this won't just vanish overnight since it didn't appear overnight... I did manage to get a referral for a psychiatrist, and I'm going to try to work that out so they'll send me to a neurologist instead. Better to check now than to end up banging my head against a wall later (lord help me). As for my thyroid, I paid for that testing privately, so I don't know what to tell you... At the clinic in Indianapolis, their FT4 hormone range is 7.5 to 21.1, and mine was 9.2... Coincidentally, my sister had her thyroid levels checked in Akron, and I told her to bring my results along. They use a range of 12 to 22 for our age group there, and they said that based on those numbers, anyone would be sent for further testing, even though my TSH is 1.19... Yet, my GP in Indianapolis thinks it's perfectly fine... Just thought I'd share. It's maddening! One place says this, another says that! I honestly feel like just jumping into the Mississippi and calling it a day. Oh, wait... I can't even do that. 😵
melloworca6 said:You can get vitamin tests done at the hospital here in Indianapolis; I actually just had my B vitamins checked out. As for sodium, potassium, calcium, and all that other stuff, you can just go through your primary care doctor.
Anyway, have you noticed if things settle down once you take something for anxiety? Does the panic attack start after you begin feeling the symptoms, or does it hit you right when the panic kicks in?
So, I went to see my doctor yesterday and asked about getting my vitamin levels checked, and she just told me they don't offer that here. WHAT AN ABSOLUTE CLOWN! 😵 Can you believe I'm so incredibly frazzled that I honestly can't tell if the panic starts before the symptoms or vice versa?
I've reached a point where I just don't know anymore because this whole ordeal has been dragging on for way too long. I even asked her about getting an X-ray for my cervical spine, and she had the nerve to tell me I'm too young to be showing any changes. Well, I did have a bike accident two years ago (I didn't go to the doctor out of pure fear, idiot), and I dealt with joint inflammation earlier this year as a reaction to a bad tooth... Needless to say, I've never even had a basic bacterial analysis done. 🤦 Does it calm down? Oh... sure, it calms down, everything stops, but that burning sensation in my hands stays regardless. And it's not like popping Normabel is a real solution either. She suggested I go swimming and take some multivitamins alongside the B12 I'm already on. I'd really love to see that work... My muscles feel like I just ran a marathon; that tension, the burning, the buzzing... it just won't quit.
Just a quick bit of logistics: I'm a student and I only switched over to this primary care doctor this year. Am I allowed to switch doctors now, or am I stuck with her for a full year?
Chris Gonzalez3 said:Just chill out and live your life. Stop obsessing over the physical pain—it can't actually hurt you, and eventually, it'll all just fade away.🙂Everything's gonna be fine.
I appreciate the kind words, truly, I do 🙂 but I just can't wrap my head around the idea that this pain could potentially last FOREVER, especially when it's being triggered by something as absurd as ANXIETY. I haven't come across anyone on this forum who suffers from this CONSTANTLY. Besides, it doesn't exactly feel like everyone here is particularly eager to actually swap stories or dive deep into what we're going through.🤷
To cut a long story short, I’ve dealt with plenty of issues that have since cleared up, but that’s beside the point. What matters is this: I was on PPI—pantoprazole—for about three months. Around that time, I started developing this tingling sensation in my hands. Over time, it evolved into muscle stiffness and a burning sensation in my forearms, even though I haven't touched the medication in months. My blood work comes back normal, though I haven't actually checked my vitamin levels—I'm not even sure if they bother testing for those specific things here in Indianapolis... I had my thyroid checked, and they say it's fine, even if the reference intervals look a little funky, but again, that's irrelevant... As for a gastroscopy, it showed some gastritis caused by pain relievers, but almost everything has healed up, so that's okay... I went to see a psychiatrist, who prescribed half a 100mg tablet of Fever in the evening and one Normabel 2mg as needed because I struggle with anxiety. They also suspect panic disorder because I find myself constantly Googling symptoms, sometimes for hours at a time... We still have to confirm all that... So far, I've been diagnosed with OCD, somatic affective disorder, and depression. Here is what’s actually eating at me: I feel better mentally; I don't Google symptoms nearly as much, I've rarely felt that paralyzing fear of death, but my arms just won't stop burning. It’s been going on for months now. Then my neck will seize up like it's on fire, or I'll get these sharp pains... or the last two fingers on my left hand will cramp up and ache deep inside... And most of the time, it all just triggers a massive wave of panic. Sometimes it feels like my nerves have simply stopped obeying me, like a nerve is hurting so badly that I can't even move. 🙂 It's constant pins and needles; I don't have the energy for anything. My whole body stiffens up and I think, "This is it, it's over." I don't lose my cool or fly off the handle—I'm 100% composed—but my body just refuses to cooperate. Then, suddenly, the tension breaks (and my nerves start hurting insanely, everywhere), but my hands won't stop burning. 😕 So, folks, what am I supposed to do? I just can't wrap my head around the idea that this is "just anxiety"—that I can have these physical "attacks" that feel totally different from my usual panic attacks, or that my hands can burn continuously for months. And when I squeeze my right arm, it feels like my bicep is crumbling?? Then my vision gets blurry, my head burns, I start shaking, and I get these electric shock sensations in my elbows... It’s driving me crazy, and I’ve even had thoughts of ending it all. I won't, obviously—I'm too much of a badass for that—but I honestly don't know who else to turn to, and I feel embarrassed 🤦 My mind jumps to things like herpes (I've had this kind of wart near my anus for a few months, I don't know...), chlamydia, or maybe a vitamin deficiency (I've been taking B12 from the drugstore for two weeks, and I've taken magnesium)... everything seems fine until my muscles start seizing and those electric shocks hit. Honestly, I could just die right then and there. Is it truly possible that my brain is playing this many tricks on me? Because this hurts; it physically hurts every single damn day. Everything is perfect when I'm sleeping and during those first ten minutes after I wake up before my brain fully kicks in. Then the show starts... Help, I'm begging you, please say something 🙂 Should I push that woman, my doctor, to refer me to a neurologist or something? I am begging you guys not to ignore this; surely someone out there can offer at least a little insight. Even if you just tell me to go jump in a lake.
Chest pains, back aches, feeling totally wiped out... you might want to look up GERD. I honestly had no clue what was going on myself 🙂 though you'll probably have to do some digging of your own to figure out the rest
It’s been a while since I last checked in here, so I thought I’d give you all an update. So, Bayer actually managed to clear up those joint issues for about two weeks, only for them to resurface last night—though thankfully they're pretty mild right now. They’re still lingering, but it’s completely manageable. FOR NOW.
I just got back from having my wisdom tooth pulled by Dr. Pfizer about an hour ago, and honestly, I can't say enough good things about him and his assistant. 🙂
As for the stomach stuff, I’ve been on Nexium for the last ten days, and it’s worked wonders; the irritation has settled down, along with that burning sensation under my ribs. The only downside is that I’ve become incredibly "gassy," which is both painful and honestly a bit ridiculous if you think about it. 😁 I went in for an abdominal ultrasound, and everything came back looking perfect. I’m planning to head back to my doctor tomorrow or the day after to finally get some bacteriological tests and a CBC done (I didn't want to push my luck earlier because the antibiotics were still masking everything). I’ll probably ask her to schedule an endoscopy as well.
So, here is the thing. Does anyone have any suggestions? I’m a little worried that those joint pains might come crashing back at me, so I was wondering if there are any other tests I should insist on getting done beyond what I've already mentioned?
Does anyone have any advice or maybe a fresh idea? I’m on day two of this flu, and while things are looking up slightly, I’ve still got this nagging ache right under my ribs... My joints are starting to loosen up just a little bit, though.
I was at the doctor's today, and she explained it just like that—honestly, the woman looked genuinely spooked. She ended up referring me to an infectious disease specialist over in St. Louis. They didn't even bother with blood work or anything because I literally just finished my course of Klavocin yesterday. According to their take, that infection has likely cleared out, and now my body just needs some downtime to recover, but they can't confirm a thing without seeing a full blood panel. As a precaution, they put me on Sumamed (some generic brand) for three days. After that, I’m supposed to head back this coming Monday to finally get my blood drawn. In the meantime, I managed to squeeze in a private appointment with my dentist, Dr. Siber. Fingers crossed 🙂 I really hope they aren't just blowing me off?
I'm just here to observe and contribute where it makes sense. kaže: If you're looking at getting a wisdom tooth pulled, I’d suggest heading to either an oral surgeon or a maxillofacial specialist rather than just a general dentist. You definitely want someone who handles these kinds of extractions regularly. Once the procedure is done, make sure you get a solid prescription for antibiotics—something like Clindamycin 600mg, taken twice a day—to keep any infection at bay while you heal.
You really need to sit down with your primary doctor and be incredibly direct about this. Don't just hint at it—lay it all out there. You should be asking her specifically about antibiotic prophylaxis to prevent potential bacterial endocarditis, rheumatic arthritis, glomerulonephritis, and any other "itis" complications that might arise, especially since you’re looking at a very high probability of an active bacterial infection. It’s better to be overly thorough now than to leave anything to chance.
You really need to speed things up here—before you even get to the actual exam, I’d suggest getting at least a digital scan from an orthodontist. It would make the whole diagnostic process a lot smoother and significantly cut down the time needed if any surgical intervention ends up being necessary.
Keep us posted on how everything is unfolding. 😉
So, I walk into my doctor’s office and flat-out tell her that I suspect bacterial endocarditis. What specific tests should I be demanding if she tries to brush me off again? Because let’s be honest, she does this constantly—acting like everything is perfectly fine when it clearly isn't. It honestly feels like there's some kind of incentive for her to avoid sending me in for actual testing. 😲 I have an orthodontist.
Kevin Garcia12 said:1. Sure, Klavocin kills bacteria—but if you’ve got an abscess somewhere in your body where the pus isn't being drained and the wall isn't being broken down, antibiotics aren't going to wipe it out...
2. Reactive arthritis syndromes can linger for a month or two after the initial infection clears, and they don't always show up on standard lab tests...
3. If you're pounding acetylsalicylic acid and similar stuff—Advil, Aleve, Motrin, whatever—stomach issues aren't just possible, they're practically a given, especially if you're mixing high doses of different meds. Honestly, if the pain was that intense, you should have been prescribed an opioid alongside the regular stuff; I know from experience because I dealt with the exact same thing, and one Christmas Eve I ended up going to a private clinic just to have them drain it because nothing else worked...
4. That needs to come out ASAP, but unfortunately, I have no clue who's working at the clinic there, so I really can't help you with that part... 🤷
The thing is, my tooth hurts the least; most of the time I don't even notice it (except when I'm eating, obviously). It's fine until that impulse to erupt kicks in, then it's pure torture. The real issue is the joint pain—that's what's becoming unbearable. Whatever, I'm going to insist on getting bacterial testing, and if anyone has any ideas, please let me know. I'll pester my doctor for five days straight if I have to; if she wants to refer me somewhere, let her do it. 🙂
Kevin Garcia12 said:The symptoms of GERD can sometimes mimic what you're feeling, and honestly, an infection in the tooth could be causing all this trouble too—it’s a bit of a long shot, but if your immune system is currently running low, it's definitely on the table. Unfortunately, dental issues can manifest in some pretty scary ways; if you start running a fever or getting the chills along with joint pain following those dental procedures, we aren't just talking about reactive arthritis—we have to consider the possibility of bacterial endocarditis. There’s also the factor of toxicity from overusing things like Advil or similar NSAIDs if you've been leaning on them heavily... At any rate, I can't give you a definitive answer, but that Apple tooth absolutely has to come out. If you're in enough pain that you can't sleep and you haven't been seen immediately, you really should have been prescribed a more adequate analgesic. As for the dislocation of the joint—that shouldn't have happened. While pain can certainly radiate toward the joint, if the joint is actually dislocated, there might be inflammation right there in the joint itself. Usually, with the temporomandibular joint, it doesn't present as a dislocation so much as trismus, where you just can't open your mouth. An infection from a tooth can spread systemically through the bloodstream or via local swelling through the facial spaces. There are plenty of different complications tied to dental work, and while they are fortunately quite rare, they would typically show up in your blood work...
So far, there hasn't been any fever or shivering. I did run a temperature once, but that was back when I was dealing with a brutal cold after getting caught in the rain three days in a row. 😢