Hello everyone,
Like many here, I've spend a lot of time trying to figure out what my issues really are. I'm a 58 year old male who is very active and fit, I've never had any medical issues up until this. My symptoms started in the spring of 2021, very back pain in the neck and shoulders and spreading up to the head. Eventually it turned into dizziness or lightheadedness, tinnitus, numb and tingling fingers. Now it's progressed to numbness/tingling/burning in the lower extremities; from the knees down and elbows down, primarily, both sides. I have very little energy, the fatigue is extreme, even when I haven't done anything physical. Muscle aches and joint pain which is seemingly random. The headaches never stop, all the symptoms have varied in intensity, but never go away.
First I thought it was lyme, since I'm outdoors quite a bit and have had ticks on me, but that was eventually ruled out through multiple types of lyme tests. I saw two neurologists, had a cervical spine MRI and a brain MRI. I saw an ENT, had a hearing test and a vestibular test. I saw an orthopedic spine specialist and a spine surgeon. I saw a lyme literate medical doctor for the past year and was treating it heavily with antibiotics and other things but eventually that was proven to be a dead end.
I saw a rheumatologist recently who looked over all the data and said "it's probably fibromyalgia." But with no definitive test, who really knows for sure? They ran a ANA MULTIPLEX W/REFLEX 11 AB CASCADE test which came back negative, so no autoimmune disease it seems. In fact, I've had no less than fifteen blood tests in the past year for different things. I had EMG tests done on both arms and legs which showed no nerve damage, even though the tingling/burning/numbness pain in my lower legs in particular can be quite severe, and never goes away. The symptoms all get worse at the same time, to the point when its really bad, I have that numbness/burning/tingling sensation almost full body, I can even feel it in my chest. Obviously its very difficult to sleep.
All these various results didn't show anything known that could be responsible, outside of this recent fibromyalgia lean. No brain tumor, no compressed vertebrae, no hearing issues or vestibular issues. The symptoms I have don't present for a neurological or nerve issue due to a structural condition. I also had a full cardio workup, including an EKG and a cardiac stress test, no issues.
What have I tried? You name it. Besides close to ten different antibiotics, a slew of pain killers, gabapentin, acupuncture, acupressure, red light therapy, compression therapy, cryotherapy, a slew of natural lyme tinctures, etc. Sometimes I feel like something is working, but it's short lived, the symptoms come back and knock me down. I've been to the urgent care twice, the ER once. I've had numerous occasions where I felt like I was going to die, I'm sure people here can relate.
But I saw a paper out of Yale a few weeks ago entitled "Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination". It's being referred to as PVS, post vaccination syndrome. This basically confirmed my suspicions, that a segment of the population are now suffering ill effects of the covid vaccines themselves. I had the Pfizer vaccine in May of 2021, two doses, and then a booster. I didn't feel like I needed it, but my job basically forced me, and well, you were considered a pariah if you didn't get it. But the study shows that people are now exhibiting these sort of same symptoms due to the vaccine.
Of course there is no protocol for this yet, it's too early. But I'm wondering if there are others here thinking the same thing. What do I have exactly? I got the feeling that the rheumatologist saw that everything else that they normally consider was checked off, so the answer is fibromyalgia, just because there are no other options left. But they aren't even considering PVS. There are various blood tests available to try and verify this, so I'm pursuing that. And I did test positive for Epstein Barr early on which is also noted in the study as a common marker for PVS.
Anyone in the same boat?
Like many here, I've spend a lot of time trying to figure out what my issues really are. I'm a 58 year old male who is very active and fit, I've never had any medical issues up until this. My symptoms started in the spring of 2021, very back pain in the neck and shoulders and spreading up to the head. Eventually it turned into dizziness or lightheadedness, tinnitus, numb and tingling fingers. Now it's progressed to numbness/tingling/burning in the lower extremities; from the knees down and elbows down, primarily, both sides. I have very little energy, the fatigue is extreme, even when I haven't done anything physical. Muscle aches and joint pain which is seemingly random. The headaches never stop, all the symptoms have varied in intensity, but never go away.
First I thought it was lyme, since I'm outdoors quite a bit and have had ticks on me, but that was eventually ruled out through multiple types of lyme tests. I saw two neurologists, had a cervical spine MRI and a brain MRI. I saw an ENT, had a hearing test and a vestibular test. I saw an orthopedic spine specialist and a spine surgeon. I saw a lyme literate medical doctor for the past year and was treating it heavily with antibiotics and other things but eventually that was proven to be a dead end.
I saw a rheumatologist recently who looked over all the data and said "it's probably fibromyalgia." But with no definitive test, who really knows for sure? They ran a ANA MULTIPLEX W/REFLEX 11 AB CASCADE test which came back negative, so no autoimmune disease it seems. In fact, I've had no less than fifteen blood tests in the past year for different things. I had EMG tests done on both arms and legs which showed no nerve damage, even though the tingling/burning/numbness pain in my lower legs in particular can be quite severe, and never goes away. The symptoms all get worse at the same time, to the point when its really bad, I have that numbness/burning/tingling sensation almost full body, I can even feel it in my chest. Obviously its very difficult to sleep.
All these various results didn't show anything known that could be responsible, outside of this recent fibromyalgia lean. No brain tumor, no compressed vertebrae, no hearing issues or vestibular issues. The symptoms I have don't present for a neurological or nerve issue due to a structural condition. I also had a full cardio workup, including an EKG and a cardiac stress test, no issues.
What have I tried? You name it. Besides close to ten different antibiotics, a slew of pain killers, gabapentin, acupuncture, acupressure, red light therapy, compression therapy, cryotherapy, a slew of natural lyme tinctures, etc. Sometimes I feel like something is working, but it's short lived, the symptoms come back and knock me down. I've been to the urgent care twice, the ER once. I've had numerous occasions where I felt like I was going to die, I'm sure people here can relate.
But I saw a paper out of Yale a few weeks ago entitled "Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination". It's being referred to as PVS, post vaccination syndrome. This basically confirmed my suspicions, that a segment of the population are now suffering ill effects of the covid vaccines themselves. I had the Pfizer vaccine in May of 2021, two doses, and then a booster. I didn't feel like I needed it, but my job basically forced me, and well, you were considered a pariah if you didn't get it. But the study shows that people are now exhibiting these sort of same symptoms due to the vaccine.
Of course there is no protocol for this yet, it's too early. But I'm wondering if there are others here thinking the same thing. What do I have exactly? I got the feeling that the rheumatologist saw that everything else that they normally consider was checked off, so the answer is fibromyalgia, just because there are no other options left. But they aren't even considering PVS. There are various blood tests available to try and verify this, so I'm pursuing that. And I did test positive for Epstein Barr early on which is also noted in the study as a common marker for PVS.
Anyone in the same boat?
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