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Jeff
Was bedbound with . Researched my own case. Figured it out despite pushback. 100% recovered due to surgery.
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Jeff retweeted
Lauren Lipsay Sep 16
I still meet the criteria for ME, although now I’m not sure which symptoms fall under that umbrella vs EDS, but that’s a thread for another time. and had similar surgeries and have seen incredible improvements in ME symptoms:
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Jeff retweeted
Lauren Lipsay Sep 16
Replying to @LaurenLipsay
I found *the* EDS neurosurgeon and my appointment with him was really an eye-opener. I’ve never had a doctor assess all of my effed-up joints, or order the imaging he did. The AAI wouldn’t have been found on a regular MRI. (These slides are from a recent presentation of his.)
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Jeff 2h
Replying to @jenbrea @netflix
Why did I even open Twitter today? If I had just *not* done so, I wouldn't have been twisted into watching The OA. I had never heard of this show until today. If it weren't your birthday, Jen... Now I'm forced to spend hours of my life on this show, because I can't look away.
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Jeff retweeted
Andrea is creating Sep 7
Interesting to hear Dr. Ron Davis making connections among ME/CFS, EDS, and CCI.
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Jeff retweeted
Caroline Elizabeth, Prof. Sep 7
Many patients are pursuing dx of CCI and related conditions associated with connective tissue degradation - do you think that mechanical bases for could explain much of what we've heard about today? If not, which aspects of CCI and related conditions don't fit?
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Jeff Sep 6
Replying to @BellHappe
Yes, it could apply to chronic repetitive strain.
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Jeff retweeted
Jeff Sep 5
I wrote about how the metabolic trap hypothesis and the mechanical explanation for ME/CFS (such as CCI, etc.) are actually quite consistent. Some people have said that both can't be true, but there's actually a lot of overlap!
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Jeff retweeted
Jennifer Brea Sep 6
Check out ’s piece about how structural/mechanical diagnoses might tie into the metabolic trap hypothesis
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Jeff Sep 5
Replying to @Lyme_Pie_Slices
Infectious triggers for collagen degradation can include viral and bacterial pathogens, including tick borne disease. The collagen-degrading enzymes include, but are not limited to, collagenases and and matrix metalloproteinases (MMPs).
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Jeff Sep 5
Replying to @PKhakpour
Thanks for this feedback. I've updated the piece to include tick borne infections as a trigger for collagen degradation.
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Jeff Sep 5
I wrote about how the metabolic trap hypothesis and the mechanical explanation for ME/CFS (such as CCI, etc.) are actually quite consistent. Some people have said that both can't be true, but there's actually a lot of overlap!
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Jeff retweeted
Jennifer Brea Sep 3
Here’s how I think compression of the back of my brainstem caused many of my ME symptoms, including hyperacusis, immune dysfunction and POTS: (PEM, muscle fatigability and “brain fog” to come later)
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Jeff Aug 26
Jay, where did Dennis ever say that he wants surgery "regardless of MRI results?" That's a freaky idea. The good news is that Dennis never remotely said that. He did say that he wants to have an upright MRI, as that is one of the gold standard tests for a CCI evaluation.
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Jeff Aug 26
Jay, I don't follow. Perhaps you should re-read Dennis's story. An upright MRI is the gold standard for diagnosing CCI. Dennis wants a proper evaluation. My "regular" MRI didn't show CCI, but my upright MRI did. This is typical. You might want to do more research into this.
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Jeff Aug 7
Replying to @CaroleBruce17
There's a "honeymoon" period post-op, followed by several months of swelling. The swelling compresses the same neural areas that were causing the pre-op symptoms. Her experience is normal for this type of surgery, and her timing has thus far paralleled mine.
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Jeff Aug 5
Replying to @OdyO11 @jenbrea
Ultimately, the Rituxan remissions weren't able to be replicated. But regarding those few people with ME/CFS who responded, I don't think there's been an explanation for their improvement.
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Ody_O Aug 5
Replying to @jenbrea
Rheumatoid upper cervical spinal instability is mechanically different as bones are eroded additionally. But this study would have been able to show which CNS symptoms can be caused by instability, how they develop over time and what effects of fixation surgery are.
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Jeff Aug 5
Replying to @OdyO11 @jenbrea
I'm curious as to whether rheumatoid upper cervical spinal degeneration was the mechanism responsible for ME/CFS in the subset who responded to Rituxan.
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Julia Aug 4
Replying to @Julia47709247
No PEM, no brain fog and absolutely no energy envelope which is the most amazing thing for me. I wake up refreshed in the morning. Pain is tolerable and I am already reducing meds. 🙏🏼🧿
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Jeff Aug 3
Replying to @jenbrea @MTackCVS and 5 others
Many patients with CCI were initially diagnosed with "migraines." After their fusions, their "migraines" go away.
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