Discussion about this post

User's avatar
Lindsay Paul's avatar

I just want to personally THANK YOU! I have searched for 3 years post adverse injury (x2 Moderna Vaccine 2021) for answers after seeing 30+ specialists, traveled to the Mayo Clinic (they didn’t even take my blood while searching for MS that later resulted in positive ANA / HLA-B27 shortly after as things progressed) had a sural nerve and quad muscle biopsy, 20+ MRIs, the list goes on and on….

Almost every specialist said they have never seen the damage that has been done to me in their careers and they all stated this “was above their pay grade”, “I humbly have to die on the sword and say I don’t know what to do with this one”, “you are in my top 3 most unique cases of my career”, etc. (I have the videos of the paralysis attacks/ tremors that are so bizarre, diagnostic testing, exploratory surgeries with no tangible outcomes other than observed the visible clinical symptoms)

I currently have been diagnosed with the following as they have all tried to navigate Dxs to put to paper for my injuries:

- random bouts of paralysis (rigid)

- stiffness / weakness

- positive ANA / HLA-B27 (Psoriatic Arthritis, Psoriasis, FIBRO, Chronic Pain, non-radiographic axial spondyloarthritis (nr-axSpA)

- 10+ migraine days a month

- Myopathy

- Neuropathy

- Tremors

- Muscle degeneration (on-going) * result from sural nerve/ quad muscle biopsy - the pathologist stated he has never seen results that returned on my stains and didn’t know what dx to label it. All they could tell me is that I may never regain my muscle mass.

- insomnia

- pituitary adenoma 3mm

- facet joint syndrome

- Hoffman (positive) left side

- variation of blood pressure (mostly low but will spike to 166/111 randomly).

I have been DENIED SSDI disability twice because social security hasn’t caught up with the adverse injuries (is that by design?). My next hearing is 3/13 so this information will help tremendously!

I would be happy to participate in any Covid adverse injury studies if they are still available. My tissues are also flagged as do not destroy for future research at Arkana Labs.

Again, thank you genuinely from the bottom of my heart. Your video today gave me a glimmer of hope and understanding. Your empathy and compassion for us is most appreciated. I will be sharing this with my Rheumatologist and Neurologist team.

Expand full comment
Dr. Juliette Hepburn's avatar

Thank you for this comprehensive information Dr. Mobeen. Much appreciated!

I have assisted a number of patients with PVS/long covid and have documented significant improvement in most symptoms within 3 days on average using methylene blue - but generally I start with higher doses and then reduce after a week or two. The improvement is almost miraculous. However the most stubborn symptom is sleep disturbance. Usually additional interventions are needed to address this adequately.

Expand full comment
23 more comments...

No posts