Did they happen to say which vaccine that they have seen these type of reactions?
He did not. I will ask him next time I see him though!
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Have you been feeling any better or are you still having issues?
If he’s referring to Guillain-Barré syndrome, it has long been known to have an association with recently vaccinated patients (2-4 weeks as I recall). Thus far it has only been reported in a small number of J&J recipients. Your Local Epidemiologist did a post on it.
I’m a little better post Toradol injection, the back pain is more manageable and the gabapentin seems to keep the nerve pain down. I’m able to do a bit more around the house and barn, which I’m very grateful for. Thank you
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Im glad you are doing a little better! I hope you continue to show improvement. Being in pain is miserable plus it is scary when you don’t what is going on! Take care!
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Based on a quick Google search, my neuro is not referring to GB. He stated he is seeing cases of spinal column inflammation as a vaccine reaction. It seems GB is something different, deterioration of the nerve sheaths. Though I guess the potential spinal tap to test for WNV could also be done to test for GB.
I read that a symptom of GB is slow reflex, my neuro noted hyper reflex in my physical exam. I don’t have the symptoms of difficulty speaking, swallowing or controlling my face muscles. Nor the weakness. Neuro noted I my limb strength was good, the “bad” leg being a bit weaker. Though this could be due to that knee; pain in that knee kinda started this whole thing. The Dr at the ER speculated I was having two issues. A bum knee and a nerve disorder. Who knows though?!?!
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Thank you!
Thank you 
Transverse Myelitis (sp?)?
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Lyme test came back clear. MRI did not find anything of significance. Nerve study didn’t find anything either.
Neurologist has “released” me from his care.
So, I have debilitating back pain and no one knows why. The nerve pain is moderately controlled with gabapentin at least.
I’m supposed to report back to work Monday. Should be interesting.
Well, shit. “We’re not really seeing much” are just about the most frustrating words a doc can utter 
Were you tested for the other tick diseases? Babesia, bartonella, anaplasma? If you didn’t see a Lyme literate doctor (it’s a specialty) it could be worthwhile.
I’m sorry you went through all that for no answers.
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I’m going to see my primary care doctor this am and ask him to pull the records for the blood work so we can verify what was tested and what wasn’t. The neuro office didn’t give me a report from the labs so I’m not sure exactly what tests were run / not run.
My immunologist balked at just giving me doxy, mentioned photosensitive side effects.
Bah humbug
So sorry you still don’t have any answers. I hope you can at least get some relief from the pain.
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So here’s a Lyme guy:
(Just one example.)
There’s a serious schism in the medical community about Lyme and the other tick diseases. On one side, you’ve got the CDC and traditionalists that have a very narrow view of what constitutes Lyme infection. They think a short course of antibiotics clears it, and chronic Lyme isn’t a thing.
On the other side, you have patients that are still sick, and a few doctors who treat mainly off of the history & symptoms, who feel the CDC diagnosis guidelines are entirely too restrictive and our testing fairly inadequate. They often treat with long courses of antibiotics and other meds, even if the patient has negative bloodwork, because they think the bloodwork isn’t very sensitive and doesn’t look for all the different sub types.
If the traditionalists have ruled out Lyme, and ruled out other issues, seeing a Lyme literate guy can be a next step. I see Cameron, and he said yesterday that Lyme (et al) is usually to blame when people are sick for a long time and no one else can figure out why. Granted, he’s a Lyme guy, so he’s talking about what he sees, which is a lot of people who think they may have Lyme because they haven’t found answers elsewhere.
Doxy isn’t the only antibiotic that’s effective on Lyme, so if your immunologist is concerned about sun sensitivity, he could rx zithromax or ceftin–citing sun sensitivity issues alone as a reason to not treat you is a serious cop out.
Babesia, at least, is also not treated with antibiotics and requires something different. I’m on Malarone for babesia, which is an antimalarial.
I feel about 80% better after a month of treatment, after dealing with this crap for years. Huge game changer. It’s just finding someone willing to listen that’s tough.
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I’m so sorry! Rheumatologist/pain doc might have more ideas, as they see a broad range of folks. I have a suspected connective tissue disorder. It started as knee/hip pain, with muscle cramping/twitching in my calves/thighs. When I majorly decompensated it was actually my cervical/shoulder area that fell apart - excruciating pain and could barely hold my head up. My inflammatory markers (ANA, rheumatoid factor) were negative, so was Lyme. PT actually ended up helping me in the end, but it was 4 months before I started to get relief. The pain (when it comes) is breathtaking. I rode in my new car for about 90 minutes the other day and haven’t gotten the seat adjusted to keep my neck/shoulder properly positioned. That evening my scalp “twitched” for hours. Can’t feel the twitch with my fingers, but my nerves are sure it was twitching - nerve firing angrily from neck being poorly positioned too long. I am not 100% convinced I don’t have something like fibromyalgia trying to start. PCP is sure there’s something immune/inflammatory looming. I suspect I’m a mix of issues. Fun! It can be hard to find a diagnosis, as doctors are often very siloed and don’t recognize a lot of the unicorn diseases.
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It does sound like fibromyalgia. I have both lupus and fibromyalgia and can never tell which is making me feel badly. Hang in there. Hopefully, they’ll come up with a diagnosis and management plan. A rheumatologist does seem like a good suggestion.
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I’m not convinced this isn’t nerve related.
Could be dysautonomia, autonomic neuropathy or small fiber neuropathy? Pots also comes to mind if you have fainting. Definitely matches the symptoms of small fiber neuropathy.
Mystery illnesses are not fun and so incredibly difficult to diagnose. I had a food borne illness- probably norovirus, but by the time I went to the doctor, it was too late to determine what started the symptoms. I developed gastroparesis- my intestinal motility suddenly stopped working - couldn’t eat, dropped weight. Started having tremors in my hands, weakness in my legs. Their best guess was whatever virus I had invaded the vagus nerve, damaging that nerve along with others. Recovery took years. They ran lots of tests, but came back with pretty much nothing. Slow GI motility, slow intestinal motility, nerve conduction testing came back normal, but I had delayed reflexes (they had a name for it which I have forgotten). No real effective treatment options… I had terrible chronic fatigue syndrome.
I eventually figured out what medications and herbal remedies helped my condition and have learned to effectively manage my symptoms. But if I’m ever exposed to covid, even being vaccinated, I am terribly concerned that I will become a covid long hauler- just because my immune system seems to be a bit unpredictable and I don’t want to have chronic fatigue syndrome again!
The moderna shot made me horribly ill for about 5 days, but that was it.
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I had terrible neck pain for a while. Some seemed to be linked to an old shoulder injury. I also got thrown head first into a jump. Head fine thanks to helmet but neck took a hit. And it seemed like after all of that should have been well over, it would take next to nothing for the pain to come back. Slight slip in the mud, easily catching myself? Couldn’t sleep that night because of my neck. Or perhaps for several nights.
My PT had me watch some videos on “somatic tracking” and we worked on training myself to come back into a parasympathetic state even if I had only the slightest “fear” or flight type response to something. Neck pain went away.
I do think you have something serious going on but perhaps working on some of those techniques can help you manage the symptoms in the meantime. It made total sense to me because this is what we do with our horses all the time…especially some of these body and personality types I’ve had that exhibit neuro windup like physical issues (esp. the back pain part).
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