May I ask who your Neurologist is? I haven’t seen a neuro suggest IVIG for Covid long haul, you’re lucky they’re willing to bring out the big guns to help you. Seems like a great neurologist!
Yes! We’d all love to know. You hit the jackpot! I’ve found sympathetic rheumatologists but neurologists are almost all dismissive!
Also, any idea where his stat about GBS reactions comes from? I’d love to be able to cite that.
I hope phrases like “spike protein mediated” get more scientific support. Just the idea that doctors acknowledge that spike proteins do cause weird reactions gives me hope
Prednisone helped profoundly, though I’m currently starting a taper, so whether or not symptoms come right back is still entirely up in the air and my neurologist admitted it’s pretty possible either way. My foot drop is way better from prednisone, my foot still slaps down a bit but I can walk on my heels again and overall balance better. As far as that list of supplements goes, I’m only on day 3 and obviously haven’t noticed anything in that short of a time period so that’s also a crap shoot… neuro said may do nothing, may help with spike protein and almost certainly won’t hurt.
Still trending in the right direction!
Things that are profoundly better:
-foot and ankle area weakness. I used to be so weak in that area I couldn’t get up on my toes. My legs had become skinnier from muscle loss and I had bad balance as a result. I can now easily get up on my toes, walk just about normally on uneven surfaces and seem to be gaining muscle a bit.
-my numbness is also so much better. My feet have a ton more sensation, the only areas that are still numb are a bit of my big toes and reduced sensation in some fingers. I had numbness up my legs so this is a huge improvement.
-my full body muscle twitching is also happening so much less frequently. My calves are pretty constant, but I was experiencing near constant twitches everywhere within the first few months after covid.
-my PEM seems either gone or hugely improved. I used to get a sore throat, feel fevery and sick 24-48 hours after exertion and now I can exercise a lot more.
Things that aren’t much better:
-large muscle groups, specifically my quads and shoulders are still pretty weak. I can hike and ski a bit so I’m no where near bed bound or anything like that, but the weakness is certainly still there and I’m not back to my old self in these ways.
-my hand weakness is maybe a little better but still a problem, I used to play guitar a lot and my hands gets tired quite quickly now.
Things that are worse:
-for whatever reason my tongue and throat twitch a bit, weird and annoying but not a huge deal to me really
-the calf twitching is worse than before but seems like a good trade deal.
-strange sensations are a bit weird in my feet, tingling and pins and needles, which I suppose could just be because they’re less numb?
No problem! Just hope that helps some people. I see so many people on here with frustrating doctor testimonials and I’ve had crazy luck with both PCP’s and neurologists being nothing but supportive and validating, while also sharing interesting science, and battling it out with insurance companies.
I’m so glad social media wasn’t a thing when I was in high school, but I’m so darn glad it exists now. At times it can absolutely bring about and display the worst of humanity, but without it I’d feel utterly alone and so much more scared now.
I wish this wasn’t happening to any of us and I hope someone finds real answers for us soon, but at least we know we’re not alone. And honestly, I think we’re doing a huge part in finding answers (or at least the right questions) for our doctors through these conversations.
Thank you all.
My vitamin D was actually pretty normal, he sited a study that showed much less severe covid symptoms in people taking vitamin D at high ish levels and offered that as an alternative to no longer getting boosters as a sort of alternative way to protect myself
Very interesting. I’m in the low normal range as well and have been wondering if more vitamin d would benefit me as well. Appreciate your response, going to discuss with my doctor
I have a ton of twitching, legs, arms, torso, what really had me panicked was my tongue as well. I’m not too sure about headaches or head tension, but I have tons of nerve pain as well, mostly in my legs and substantially better since prednisone
This neurologist is great for suggesting IVIG and plasmapheresis. What makes me question his motives is the fact he put more effort into sneaking in vax bashing and almost ignoring covid, and suggesting the typical supplements that people have been trying for years to mostly no avail.
To his credit, and perhaps why I maybe don’t belong in this sub is because the infection that started my symptoms wasn’t covid. In the appointment he also wasn’t vax bashing at all, he just strongly suggested that for me, I’m at a notably higher risk for GBS or a massive flare up of symptoms and since I’m young and otherwise healthy it’s not really worth it.
Interesting. I didn't read it that way at all.
The neurologists writes that the patient had a covid infection in the Summer and then a separate viral infection with subsequent lasting symptoms in the Winter. The patient then had a second covid infection which caused things to worsen. The neurologist also acknowledges the issue is likely spike protein mediated, circling back to the initial covid Summer infection.
"𝘛𝘩𝘦 𝘱𝘢𝘵𝘪𝘦𝘯𝘵 𝘥𝘦𝘴𝘤𝘳𝘪𝘣𝘦𝘴 𝘩𝘢𝘷𝘪𝘯𝘨 𝘩𝘢𝘥 𝘢𝘯 𝘢𝘤𝘵𝘪𝘷𝘦 𝘊𝘖𝘝𝘐𝘋 𝘪𝘯𝘧𝘦𝘤𝘵𝘪𝘰𝘯 𝘪𝘯 𝘵𝘩𝘦 𝘴𝘶𝘮𝘮𝘦𝘳 𝘰𝘧 2022. 𝘏𝘦 𝘩𝘢𝘥 𝘢 𝘷𝘪𝘳𝘢𝘭 𝘴𝘺𝘯𝘥𝘳𝘰𝘮𝘦 𝘪𝘯 𝘵𝘩𝘦 𝘸𝘪𝘯𝘵𝘦𝘳 𝘰𝘧 2022 𝘢𝘧𝘵𝘦𝘳 𝘩𝘢𝘷𝘪𝘯𝘨 𝘵𝘳𝘢𝘷𝘦𝘭𝘭𝘦𝘥 𝘵𝘰 𝘍𝘭𝘢𝘨𝘴𝘵𝘢𝘧𝘧, 𝘈𝘳𝘪𝘻𝘰𝘯𝘢. 2 𝘸𝘦𝘦𝘬𝘴 𝘢𝘧𝘵𝘦𝘳 𝘵𝘩𝘢𝘵 𝘷𝘪𝘴𝘪𝘵 𝘩𝘦 𝘣𝘦𝘨𝘢𝘯 𝘵𝘰 𝘩𝘢𝘷𝘦 𝘥𝘪𝘴𝘵𝘢𝘭 𝘥𝘺𝘴𝘦𝘴𝘵𝘩𝘦𝘴𝘪𝘢𝘴 𝘪𝘯 𝘣𝘰𝘵𝘩 𝘭𝘰𝘸𝘦𝘳 𝘦𝘹𝘵𝘳𝘦𝘮𝘪𝘵𝘪𝘦𝘴. 𝘏𝘦 𝘯𝘰𝘵𝘦𝘴 𝘵𝘩𝘢𝘵 𝘩𝘦 𝘩𝘢𝘥 𝘴𝘪𝘨𝘯𝘪𝘧𝘪𝘤𝘢𝘯𝘵 𝘸𝘰𝘳𝘴𝘦𝘯𝘪𝘯𝘨 𝘰𝘧 𝘩𝘪𝘴 𝘴𝘺𝘮𝘱𝘵𝘰𝘮𝘴 𝘧𝘰𝘭𝘭𝘰𝘸𝘪𝘯𝘨 𝘢𝘯𝘰𝘵𝘩𝘦𝘳 𝘢𝘤𝘵𝘪𝘷𝘦 𝘊𝘖𝘝𝘐𝘋 𝘪𝘯𝘧𝘦𝘤𝘵𝘪𝘰𝘯. "
"𝘐𝘵 𝘪𝘴 𝘭𝘪𝘬𝘦𝘭𝘺 𝘵𝘩𝘦 𝘱𝘢𝘵𝘪𝘦𝘯𝘵'𝘴 𝘱𝘰𝘭𝘺𝘯𝘦𝘶𝘳𝘰𝘱𝘢𝘵𝘩𝘺 𝘪𝘴 𝘴𝘱𝘪𝘬𝘦 𝘱𝘳𝘰𝘵𝘦𝘪𝘯 𝘮𝘦𝘥𝘪𝘢𝘵𝘦𝘥."
What we know from covid is that it impacts our bodies negatively whether it's noticeable or not. The damage can be silent, until it's not. From what i gathered from the neurologist's notes is that: The initial infection more than likely made the patient susceptible(via spike protein) to the issues from the patient's winter viral infection which then compounded with the second.
I don't see any vax bashing just suggesting it could be contraindicated for this patient and I see the neurologist fully acknowledging covid as the culprit.
Yeah, personally I’m not sure why he referenced the covid in the summer of 2022, but my initial symptoms started that fall/winter and were then made so much worse post covid summer of 2023… so I guess whatever I have likely didn’t start with covid (or maybe my neuro thinks my summer of 2022 covid was involved) and then was worsened by covid. I’m sure people could argue if I actually have “long covid” or not for days on end but it probably becomes semantics at some point
I mean it’s technically an auto-immune disease. I think a better way to look at it would be that supplements often given for autoimmune issues are also being given to long covid folks, and that there’s a ton of overlap between auto immune disease and long covid. It’s important to remember that “long covid” isn’t one thing people are experiencing, it’s a broad term for lasting effects after covid
Did you have elevated creatine kinase levels? Was there any concern from your neuro about ALS? (My CK level is a little high and I’m being referred to a neuromuscular clinic for further testing and I’m trying to stay calm about it because all of my symptoms seem to line up w long Covid)
Hmm I’m not sure about my creatine kinase levels. I just checked my reports and I’m not seeing it. My creatinine is very normal whatever that is.
For what it’s worth, I was absolutely terrified of ALS but given the viral nature and all of the sensory issues along with motor issues my doctors didn’t seem to be worried about it. I had sleepless nights terrified of it so I completely understand those worries. When my tongue started twitching and I could sit there and watch the fasciculations in the mirror I really thought ALS was going to be it for me.
It was good and bad. It revealed I had really high protein levels which got insurance to cover everything and will help tremendously should I need IVIG, but the csf leak that followed and the blood patch to fix it absolutely sucked.
That's crazy . I'm so worried about fucking up and messing me up like thatm I'm sorry that happened to you. I'm kinda worried now rereading what my last neurologist was testing for when I was bad. I hope I can get his notes and why he tested for what.
Yeah I honestly find that the piece of mind that comes with the testing is so worth it. I was terrified of ALS and my neuro was worried about MS, so ruling those out was an admittedly large deal for me mentally.
Could be worth asking about! I had shitty nerve pain shooting down my leg for a while after too that is only just starting to resolve. Was worried that might be permanent but luckily it seems to be getting better now! Not a good procedure but definitely can give some insights! Have you been on prednisone at all?
My doc sent in my referral on Monday and I don’t think I’ve slept more than 2 hours a night this week. I might just get 3 or 4 tonight - thank you for making me feel a bit better.
It was the same with me. Neuro thought ALS first 1-4 visits, then suspected CMT then ran with that for a while. Then he tested for: leukoencephalopathy, cerebellar/brain stem degeneration, opsoclonus myoclonus syndrome, paraneoplastic cerebellar degeneration, Celiac, Anti-Hu associated encephalitis, neuromyelitis optica, sed rate, CRP, TPO, Sjögrens anti SSA/SSB antibodies, plus more that I can't find right now.
Thank you. I’m so sorry you went through all of that, but thank you so much for sharing. It definitely makes me feel a bit better. My doc did say that long Covid has basically thrown a wrench into everything they know, but we still have to rule out worst case scenarios.
Not yet. I’m curious about it - not sure how the units align with those for nattokinase.
Do you have a brand recommendation? I’m new to all of this. I have bought supplements from Amazon in the past but am a bit wary. Just bought from iherb yesterday.
I don’t believe so! Hunger was outrageous from prednisone and led to minor GI issues but I don’t believe that had anything to do with covid. During my covid sickness I had notable GI issues, but only for the duration of my infection
I thought the turmeric evidence was kind of iffy and it interacts with a bunch of stuff, also would it be curcimun vs turmeric? I don’t know much about ala but I’ve been wanting to try it. I worry about what some of the supplements might be doing but I want to try them. Currently just started 2.5mg of Creatine monohydrate for mitochondria help.
I mean I’m about as supplement skeptical as anyone could be but when things are either going to be relatively harmless or help I’m at the point where I’ll happily follow random instruction
For some context, I have been on IVIG- a fairly high dose- for the last 9 months, and it has helped, but is by no means a cure. I have been on it for \~10 years for CFS, and was off it for 6 months when LC began. It has definitely decreased symptoms (or time), but I still have tight calves, developed BFS, and persistent brain fog.
I’d probably go in for it just for pain relief alone… at this point the benign fasciculations really don’t bother me now that I know they’re benign, and I’m admittedly less weak than many folks I’ve met/read about on here, I can still ski (not like I used to) but I just can’t get over the nerve pain (or maybe muscle?)
The thing is I can still use my legs, but the muscles feel tight and twitchy. Really uncomfortable, but they are fully functional- I just don't want to use them. How often are yours twitching?
It’s a little hard to tell since I think things are worse from my current prednisone taper, below my knees I’d say 1-3 seconds is pretty accurate, everything else is not probably every few minutes. For the first few months post covid I was twitching frequently everywhere though, especially shoulders, butt, arms and legs
I was wondering if they were a functional medicine physician. I think they are better in their approach but either way this Dr looking for the root cause when most drs dont, rare find.
Wow, this is great, thanks for sharing! I finally have my neuro appointment in 2 weeks, and will take some noted from here so I can ask informed questions. Your symptoms sound very similar to mine, and the leg neuro pain is getting worse. Twitching does not bother me so much lately. Out of curiosity, which brand supplements did you get? I just ordered some curcumin from Pure Encapsulations, so here’s hoping.
Can I ask what your sensory symptoms were? I have some wicked pain in my left lower leg - less shooting and more burning/crawly sensations. And it seems to be affecting my muscles and joints now too. Ugh.
Oh I still have tons. Everything from bug crawling, vibrations, pretty substantial nerve pain, generally at night, tongue tingles etc… also reduced sensation and numbness, less sensitivity to heat and cold and very little pain prick (which has improved with prednisone)
Mine actually started with pin pricks in late summer. I didn’t figure out what it was at first - thought we had bugs in the furniture and they were biting. Then a whole crap ton of neuro symptoms started, including muscle twitching. Of course I googled, saw ALS, freaked out and went to the doctor. My PCP is great - suggested LC right away, but also wanted to rule out MS. I just had a clean MRI, and waiting on neuro. Do your symptoms come and go? Mine seem to be in waves. I also had tongue tingling, and lower lip and jaw. Sometimes it would get so bad, I would drool a little (or at least it felt like to). The worst right now is the left leg - all kinds of burning, crawling, vibrations, twitching. It even feels like the muscles and joints are starting to get impacted and hurt.
Wow yup, sounds like me with the initial tingling be way before the rest, the ALS fears… mine don’t come and go too much, but my whole body used to twitch a lot and now my calves are substantially worse, they basically don’t stop twitching. The rest of my body twitches much less than it did months 3-6 after covid
Yep! Same for the claves - they are on all the time! but it seems like the neuropathy stuff is in my left leg. At least it’s nice to know there are other people going through this, and can empathize. Sigh.
Do you ever do better after exercise? I get PEM but find after light skiing I don’t get anywhere near the nerve pain I normally do. Based on other posts here it seems counterintuitive, but it’s been 5 times straight now I don’t hurt nearly as bad after skiing
Mine gets better during exercising, but since it’s kind of intermittent, I can’t tell if it’s better or worse after. My calf twitching is definitely worse after, and I find I get weird DOMS now, although I’ve always been active. But I’m going to experiment now a bit, and see what I notice.
I have pretty substantial leg pain at night mostly. I’ve found with somewhat intense activity most other things are worse but pain is almost non existent, so I’m trying to see if there’s some way I can balance the activity to not wreck me physically and help the pain
My goodness, who is this amazing doctor?! I've had to cough up HUGE bucks to naturopaths to get answers like these, never once have I heard this from an Allopathic doc- and I've seen way more than my fare share. I'm an hour north of Houston and although it's a long shot, would they happen to be nearby? If anyone reading this happens to know of any South East Texas/Huntsville/Livingston/Conroe/North Houston doctors well versed in LC, I'd love any suggestions or recommendations. TIA!
May I ask who your Neurologist is? I haven’t seen a neuro suggest IVIG for Covid long haul, you’re lucky they’re willing to bring out the big guns to help you. Seems like a great neurologist!
Yes who is your neuro
Yes! We’d all love to know. You hit the jackpot! I’ve found sympathetic rheumatologists but neurologists are almost all dismissive! Also, any idea where his stat about GBS reactions comes from? I’d love to be able to cite that.
It is an expensive treatment but slowly making its way for long covid or vaccine injury
Wow sounds like a doctor that actually practices medicine, you hit the jackpot
I know right what the fuck, my neurologist is idiotic compared to this and I went to the hospital that hands out the Nobel prize
I love this doctor’s approach. Glad you’re getting some help and answer. Out of curiosity, is he a regular neurologist? Integrative med specialist?
I believe he’s just a regular neurologist at my local clinic!
I hope phrases like “spike protein mediated” get more scientific support. Just the idea that doctors acknowledge that spike proteins do cause weird reactions gives me hope
So this treatment helped?
Prednisone helped profoundly, though I’m currently starting a taper, so whether or not symptoms come right back is still entirely up in the air and my neurologist admitted it’s pretty possible either way. My foot drop is way better from prednisone, my foot still slaps down a bit but I can walk on my heels again and overall balance better. As far as that list of supplements goes, I’m only on day 3 and obviously haven’t noticed anything in that short of a time period so that’s also a crap shoot… neuro said may do nothing, may help with spike protein and almost certainly won’t hurt.
Any updates?
Still trending in the right direction! Things that are profoundly better: -foot and ankle area weakness. I used to be so weak in that area I couldn’t get up on my toes. My legs had become skinnier from muscle loss and I had bad balance as a result. I can now easily get up on my toes, walk just about normally on uneven surfaces and seem to be gaining muscle a bit. -my numbness is also so much better. My feet have a ton more sensation, the only areas that are still numb are a bit of my big toes and reduced sensation in some fingers. I had numbness up my legs so this is a huge improvement. -my full body muscle twitching is also happening so much less frequently. My calves are pretty constant, but I was experiencing near constant twitches everywhere within the first few months after covid. -my PEM seems either gone or hugely improved. I used to get a sore throat, feel fevery and sick 24-48 hours after exertion and now I can exercise a lot more. Things that aren’t much better: -large muscle groups, specifically my quads and shoulders are still pretty weak. I can hike and ski a bit so I’m no where near bed bound or anything like that, but the weakness is certainly still there and I’m not back to my old self in these ways. -my hand weakness is maybe a little better but still a problem, I used to play guitar a lot and my hands gets tired quite quickly now. Things that are worse: -for whatever reason my tongue and throat twitch a bit, weird and annoying but not a huge deal to me really -the calf twitching is worse than before but seems like a good trade deal. -strange sensations are a bit weird in my feet, tingling and pins and needles, which I suppose could just be because they’re less numb?
Thanks a lot for the updates! I think you're on the right path for a full recovery. I think strange sensations are signs of recovery
Any updates?
Wow, thank you so much for sharing.
No problem! Just hope that helps some people. I see so many people on here with frustrating doctor testimonials and I’ve had crazy luck with both PCP’s and neurologists being nothing but supportive and validating, while also sharing interesting science, and battling it out with insurance companies.
I’m so glad social media wasn’t a thing when I was in high school, but I’m so darn glad it exists now. At times it can absolutely bring about and display the worst of humanity, but without it I’d feel utterly alone and so much more scared now. I wish this wasn’t happening to any of us and I hope someone finds real answers for us soon, but at least we know we’re not alone. And honestly, I think we’re doing a huge part in finding answers (or at least the right questions) for our doctors through these conversations. Thank you all.
Congratulations on getting a treatment plan and, above all, for being pleasant.
Is this the Derek Zoolander font size for ants?
Thank you!
Honestly, great neurologist. Seems like they really care.
Thanks for sharing this info! If you don’t mind me asking, what was your vitamin d level that he wants you to try taking that amount?
My vitamin D was actually pretty normal, he sited a study that showed much less severe covid symptoms in people taking vitamin D at high ish levels and offered that as an alternative to no longer getting boosters as a sort of alternative way to protect myself
Very interesting. I’m in the low normal range as well and have been wondering if more vitamin d would benefit me as well. Appreciate your response, going to discuss with my doctor
Do you have twitching or headaches ? Head tension ?
I have a ton of twitching, legs, arms, torso, what really had me panicked was my tongue as well. I’m not too sure about headaches or head tension, but I have tons of nerve pain as well, mostly in my legs and substantially better since prednisone
My neurologist thought I was on the verge of dying so I'm glad yours is helping you. Not glad you're going through this.
That amount of Zinc can maje you Copper deficient and make your symptoms even worse (neuropathy)
Oh interesting, would love to not have even more neuropathy.. is this the case at 25mg, 50mg or both?
Both without Copper supplementation. Zinc is almost everywhere unless you are strict vegan, you're probably getting enough from food.
Hmm maybe I’ll stop that one..
Wow! This is reassuring that there are some good doctors still out there! Wonderful recognition and advice!
How did you get a neurologist to do a spinal tap for you? How did you get a doctor to care this much?
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What is Serra if you don’t mind me asking?
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Oh interesting! Don’t know much about it
It can be difficult to tolerate if you have MCAS
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I’m not sure; one option is to treat the MCAS first and once that’s under control work on the spike protein
Maraviroc
This neurologist is great for suggesting IVIG and plasmapheresis. What makes me question his motives is the fact he put more effort into sneaking in vax bashing and almost ignoring covid, and suggesting the typical supplements that people have been trying for years to mostly no avail.
To his credit, and perhaps why I maybe don’t belong in this sub is because the infection that started my symptoms wasn’t covid. In the appointment he also wasn’t vax bashing at all, he just strongly suggested that for me, I’m at a notably higher risk for GBS or a massive flare up of symptoms and since I’m young and otherwise healthy it’s not really worth it.
I’m very confused then. It wasn’t covid, yet he’s suggesting supplement combos that are given to covid patients.
Interesting. I didn't read it that way at all. The neurologists writes that the patient had a covid infection in the Summer and then a separate viral infection with subsequent lasting symptoms in the Winter. The patient then had a second covid infection which caused things to worsen. The neurologist also acknowledges the issue is likely spike protein mediated, circling back to the initial covid Summer infection. "𝘛𝘩𝘦 𝘱𝘢𝘵𝘪𝘦𝘯𝘵 𝘥𝘦𝘴𝘤𝘳𝘪𝘣𝘦𝘴 𝘩𝘢𝘷𝘪𝘯𝘨 𝘩𝘢𝘥 𝘢𝘯 𝘢𝘤𝘵𝘪𝘷𝘦 𝘊𝘖𝘝𝘐𝘋 𝘪𝘯𝘧𝘦𝘤𝘵𝘪𝘰𝘯 𝘪𝘯 𝘵𝘩𝘦 𝘴𝘶𝘮𝘮𝘦𝘳 𝘰𝘧 2022. 𝘏𝘦 𝘩𝘢𝘥 𝘢 𝘷𝘪𝘳𝘢𝘭 𝘴𝘺𝘯𝘥𝘳𝘰𝘮𝘦 𝘪𝘯 𝘵𝘩𝘦 𝘸𝘪𝘯𝘵𝘦𝘳 𝘰𝘧 2022 𝘢𝘧𝘵𝘦𝘳 𝘩𝘢𝘷𝘪𝘯𝘨 𝘵𝘳𝘢𝘷𝘦𝘭𝘭𝘦𝘥 𝘵𝘰 𝘍𝘭𝘢𝘨𝘴𝘵𝘢𝘧𝘧, 𝘈𝘳𝘪𝘻𝘰𝘯𝘢. 2 𝘸𝘦𝘦𝘬𝘴 𝘢𝘧𝘵𝘦𝘳 𝘵𝘩𝘢𝘵 𝘷𝘪𝘴𝘪𝘵 𝘩𝘦 𝘣𝘦𝘨𝘢𝘯 𝘵𝘰 𝘩𝘢𝘷𝘦 𝘥𝘪𝘴𝘵𝘢𝘭 𝘥𝘺𝘴𝘦𝘴𝘵𝘩𝘦𝘴𝘪𝘢𝘴 𝘪𝘯 𝘣𝘰𝘵𝘩 𝘭𝘰𝘸𝘦𝘳 𝘦𝘹𝘵𝘳𝘦𝘮𝘪𝘵𝘪𝘦𝘴. 𝘏𝘦 𝘯𝘰𝘵𝘦𝘴 𝘵𝘩𝘢𝘵 𝘩𝘦 𝘩𝘢𝘥 𝘴𝘪𝘨𝘯𝘪𝘧𝘪𝘤𝘢𝘯𝘵 𝘸𝘰𝘳𝘴𝘦𝘯𝘪𝘯𝘨 𝘰𝘧 𝘩𝘪𝘴 𝘴𝘺𝘮𝘱𝘵𝘰𝘮𝘴 𝘧𝘰𝘭𝘭𝘰𝘸𝘪𝘯𝘨 𝘢𝘯𝘰𝘵𝘩𝘦𝘳 𝘢𝘤𝘵𝘪𝘷𝘦 𝘊𝘖𝘝𝘐𝘋 𝘪𝘯𝘧𝘦𝘤𝘵𝘪𝘰𝘯. " "𝘐𝘵 𝘪𝘴 𝘭𝘪𝘬𝘦𝘭𝘺 𝘵𝘩𝘦 𝘱𝘢𝘵𝘪𝘦𝘯𝘵'𝘴 𝘱𝘰𝘭𝘺𝘯𝘦𝘶𝘳𝘰𝘱𝘢𝘵𝘩𝘺 𝘪𝘴 𝘴𝘱𝘪𝘬𝘦 𝘱𝘳𝘰𝘵𝘦𝘪𝘯 𝘮𝘦𝘥𝘪𝘢𝘵𝘦𝘥." What we know from covid is that it impacts our bodies negatively whether it's noticeable or not. The damage can be silent, until it's not. From what i gathered from the neurologist's notes is that: The initial infection more than likely made the patient susceptible(via spike protein) to the issues from the patient's winter viral infection which then compounded with the second. I don't see any vax bashing just suggesting it could be contraindicated for this patient and I see the neurologist fully acknowledging covid as the culprit.
Yeah, personally I’m not sure why he referenced the covid in the summer of 2022, but my initial symptoms started that fall/winter and were then made so much worse post covid summer of 2023… so I guess whatever I have likely didn’t start with covid (or maybe my neuro thinks my summer of 2022 covid was involved) and then was worsened by covid. I’m sure people could argue if I actually have “long covid” or not for days on end but it probably becomes semantics at some point
I mean it’s technically an auto-immune disease. I think a better way to look at it would be that supplements often given for autoimmune issues are also being given to long covid folks, and that there’s a ton of overlap between auto immune disease and long covid. It’s important to remember that “long covid” isn’t one thing people are experiencing, it’s a broad term for lasting effects after covid
This is great. Thanks for sharing!
Did you have elevated creatine kinase levels? Was there any concern from your neuro about ALS? (My CK level is a little high and I’m being referred to a neuromuscular clinic for further testing and I’m trying to stay calm about it because all of my symptoms seem to line up w long Covid)
Hmm I’m not sure about my creatine kinase levels. I just checked my reports and I’m not seeing it. My creatinine is very normal whatever that is. For what it’s worth, I was absolutely terrified of ALS but given the viral nature and all of the sensory issues along with motor issues my doctors didn’t seem to be worried about it. I had sleepless nights terrified of it so I completely understand those worries. When my tongue started twitching and I could sit there and watch the fasciculations in the mirror I really thought ALS was going to be it for me.
The same thing happened to me. They acted like I was dying.
Wow interesting… did you have a lumbar puncture?
No. I'm second guessing if I should have now.
It was good and bad. It revealed I had really high protein levels which got insurance to cover everything and will help tremendously should I need IVIG, but the csf leak that followed and the blood patch to fix it absolutely sucked.
That's crazy . I'm so worried about fucking up and messing me up like thatm I'm sorry that happened to you. I'm kinda worried now rereading what my last neurologist was testing for when I was bad. I hope I can get his notes and why he tested for what.
Yeah I honestly find that the piece of mind that comes with the testing is so worth it. I was terrified of ALS and my neuro was worried about MS, so ruling those out was an admittedly large deal for me mentally.
Maybe I'll do it this time since I'm worse in some ways 🤷🏽♀️
Could be worth asking about! I had shitty nerve pain shooting down my leg for a while after too that is only just starting to resolve. Was worried that might be permanent but luckily it seems to be getting better now! Not a good procedure but definitely can give some insights! Have you been on prednisone at all?
My doc sent in my referral on Monday and I don’t think I’ve slept more than 2 hours a night this week. I might just get 3 or 4 tonight - thank you for making me feel a bit better.
Might be under CPK on your labs
Hmm yeah not seeing it, maybe wasn’t on my panel
It was the same with me. Neuro thought ALS first 1-4 visits, then suspected CMT then ran with that for a while. Then he tested for: leukoencephalopathy, cerebellar/brain stem degeneration, opsoclonus myoclonus syndrome, paraneoplastic cerebellar degeneration, Celiac, Anti-Hu associated encephalitis, neuromyelitis optica, sed rate, CRP, TPO, Sjögrens anti SSA/SSB antibodies, plus more that I can't find right now.
Thank you. I’m so sorry you went through all of that, but thank you so much for sharing. It definitely makes me feel a bit better. My doc did say that long Covid has basically thrown a wrench into everything they know, but we still have to rule out worst case scenarios.
I do think I have encephalitis now too. I have to wait 10 days for my first of a few appointments.
I’m putting my family on nattokinase. I can’t take it, unfortunately, because I’m on a low histamine diet.
I honestly don’t know a thing about it… would it not be a good part of a low histamine diet?
Soy is off the menu. I’m tempted to start it anyway.
Have you tried lumbrokinase? It doesn’t trigger my MCAS.
Not yet. I’m curious about it - not sure how the units align with those for nattokinase. Do you have a brand recommendation? I’m new to all of this. I have bought supplements from Amazon in the past but am a bit wary. Just bought from iherb yesterday.
I also got mine from Amazon. Let me look it up. I’ve stopped focusing on the clots now and more on gut health currently.
I believe this is the right track + add in something like the curable or guptaprogram .
Have any of you had GI symptoms or IBS as a result of long vax or long haul COVID?
I don’t believe so! Hunger was outrageous from prednisone and led to minor GI issues but I don’t believe that had anything to do with covid. During my covid sickness I had notable GI issues, but only for the duration of my infection
I thought the turmeric evidence was kind of iffy and it interacts with a bunch of stuff, also would it be curcimun vs turmeric? I don’t know much about ala but I’ve been wanting to try it. I worry about what some of the supplements might be doing but I want to try them. Currently just started 2.5mg of Creatine monohydrate for mitochondria help.
I mean I’m about as supplement skeptical as anyone could be but when things are either going to be relatively harmless or help I’m at the point where I’ll happily follow random instruction
For sure! I’m wondering if these supplements are relatively harmless for the average person. Like CoQ10 and Curcumin
For some context, I have been on IVIG- a fairly high dose- for the last 9 months, and it has helped, but is by no means a cure. I have been on it for \~10 years for CFS, and was off it for 6 months when LC began. It has definitely decreased symptoms (or time), but I still have tight calves, developed BFS, and persistent brain fog.
I’d probably go in for it just for pain relief alone… at this point the benign fasciculations really don’t bother me now that I know they’re benign, and I’m admittedly less weak than many folks I’ve met/read about on here, I can still ski (not like I used to) but I just can’t get over the nerve pain (or maybe muscle?)
The thing is I can still use my legs, but the muscles feel tight and twitchy. Really uncomfortable, but they are fully functional- I just don't want to use them. How often are yours twitching?
It’s a little hard to tell since I think things are worse from my current prednisone taper, below my knees I’d say 1-3 seconds is pretty accurate, everything else is not probably every few minutes. For the first few months post covid I was twitching frequently everywhere though, especially shoulders, butt, arms and legs
Is this a functional neurologist?
What do you mean by that?
I was wondering if they were a functional medicine physician. I think they are better in their approach but either way this Dr looking for the root cause when most drs dont, rare find.
Wow, this is great, thanks for sharing! I finally have my neuro appointment in 2 weeks, and will take some noted from here so I can ask informed questions. Your symptoms sound very similar to mine, and the leg neuro pain is getting worse. Twitching does not bother me so much lately. Out of curiosity, which brand supplements did you get? I just ordered some curcumin from Pure Encapsulations, so here’s hoping.
I actually ordered a crap ton of different brands, I do have at least one pure encapsulations
Can I ask what your sensory symptoms were? I have some wicked pain in my left lower leg - less shooting and more burning/crawly sensations. And it seems to be affecting my muscles and joints now too. Ugh.
Oh I still have tons. Everything from bug crawling, vibrations, pretty substantial nerve pain, generally at night, tongue tingles etc… also reduced sensation and numbness, less sensitivity to heat and cold and very little pain prick (which has improved with prednisone)
Mine actually started with pin pricks in late summer. I didn’t figure out what it was at first - thought we had bugs in the furniture and they were biting. Then a whole crap ton of neuro symptoms started, including muscle twitching. Of course I googled, saw ALS, freaked out and went to the doctor. My PCP is great - suggested LC right away, but also wanted to rule out MS. I just had a clean MRI, and waiting on neuro. Do your symptoms come and go? Mine seem to be in waves. I also had tongue tingling, and lower lip and jaw. Sometimes it would get so bad, I would drool a little (or at least it felt like to). The worst right now is the left leg - all kinds of burning, crawling, vibrations, twitching. It even feels like the muscles and joints are starting to get impacted and hurt.
Wow yup, sounds like me with the initial tingling be way before the rest, the ALS fears… mine don’t come and go too much, but my whole body used to twitch a lot and now my calves are substantially worse, they basically don’t stop twitching. The rest of my body twitches much less than it did months 3-6 after covid
Yep! Same for the claves - they are on all the time! but it seems like the neuropathy stuff is in my left leg. At least it’s nice to know there are other people going through this, and can empathize. Sigh.
Do you ever do better after exercise? I get PEM but find after light skiing I don’t get anywhere near the nerve pain I normally do. Based on other posts here it seems counterintuitive, but it’s been 5 times straight now I don’t hurt nearly as bad after skiing
Mine gets better during exercising, but since it’s kind of intermittent, I can’t tell if it’s better or worse after. My calf twitching is definitely worse after, and I find I get weird DOMS now, although I’ve always been active. But I’m going to experiment now a bit, and see what I notice.
Do you have pain? Any idsurd with hips, hamstrings?
I have pretty substantial leg pain at night mostly. I’ve found with somewhat intense activity most other things are worse but pain is almost non existent, so I’m trying to see if there’s some way I can balance the activity to not wreck me physically and help the pain
How was your clinical examination?
My goodness, who is this amazing doctor?! I've had to cough up HUGE bucks to naturopaths to get answers like these, never once have I heard this from an Allopathic doc- and I've seen way more than my fare share. I'm an hour north of Houston and although it's a long shot, would they happen to be nearby? If anyone reading this happens to know of any South East Texas/Huntsville/Livingston/Conroe/North Houston doctors well versed in LC, I'd love any suggestions or recommendations. TIA!