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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.

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Mobeen Syed MD's avatar

You are welcome. Praying for your complete recovery!

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Ellen Brucker Marshall's avatar

Sounds familiar, too familiar. Like the Lyme and co-infection I have endured over 20 years while doctors scratch their heads and try to refer me to psych.

My best guess is that the researchers who brought Willy Bergdorfer’s super bug to eastern Europe have manufactured this antigen in both the illness and the arm prick.

Both trigger a viral-autoimmune response that revive latent diseases.

If doctors have learned to wash hands before surgeries, they can learn about emerging long-illnesses, not in the “published literature”.

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Laura's avatar

Are you willing to fly to OKC? I can treat you and you’ll be 90% better in 1 month.

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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.

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Mobeen Syed MD's avatar

Very interesting. Thank you for sharing your experience about methylene blue.

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Lindsay Paul's avatar

Hi-

I’m curious as I have navigated this for 3+ years, did your patients present with any of issues listed in my comment above? Was their progress measured by immune response, neurological, or other means? Thanks!

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Dr. Juliette Hepburn's avatar

Many patients are unable to afford some of the tests which I would like to run (d dimer, HS CRP, IL-6 etc.) but I do track symptoms with a symptom score. I’m not sure if I can attach a PDF or image to give you an idea but I track fatigue, post exertion malaise, brain fog, various other neurological symptoms, pulmonary, GI etc. The response is nothing short of phenomenal and quite quick too. I haven’t come across anyone that hasn’t responded (yet!). But of course cannot give if on certain meds eg SSRIs etc.

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Sandi's avatar

What dosage regimen would you use thank you

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Sarah Fudge's avatar

Thank you for putting us front and centre when we have been left to curb. I have a few questions. I have been studying how to get better almost 4 years full time from my bed and looking at hundreds of papers. I have tried all the natural supplements you list and I think without them, I might be dead but I am still not improving. Valcyclovir has helped me regain a bit of leg strength but still minimal. If I miss a dose, there is more paralysis of the legs. Its hard to negotiate this when valcyclovir inhibits mt DNA polymerase so I often get neurotoxicity from it and have to lower the dose since an organic acid tests showed severe mitochondrial problems. I understand it takes at least 6 months to deplete EBV from the natural killer cells which get affected. Also I think HSV 1 may be in the mix for some of us and that will lower T cell function. My reaction to the vaccine was 15 min after and never was the same so I don’t think this is all herpesvirus reactivation but like you say, possibly it becomes active through dysregulated immune system. If mitochondria are damaged from the vaccine, then the mast cells get activated from the mt DNA in the cytosol, then pathogen activation happens from the immune dusregulation is how I see it. Perhaps we have all 3 going at once and they affect each other. Can I offset the effects of valcyclovir with PQQ for mitochondrial biogenesis? Or is it possible there is too much faulty mitochondria and PQQ will just increase that? Is it possible the EBV activated right away causing the immune problems entirely and that is why there are still spike production? Also do you think steroids could make herpesvirus worse? I see a study where they use both steroids and acyclovir for herpes encephalitis with good results. Although anything steroidal as you say can make it worse. I see that T type calcium channel blockers may help stop replication as its calcium influx that is used to infect neurons. T type calcium channel blockers also help with internal tremors according to a study. Maybe spironolactone could help with valtrex for its antiherpes effect. Cox 2 inhibitors also help stop replication... yet some people report nicotine which increases Cox 2 to help LC and post vax. But mainly is my problem with valcyclovir and how to solve the issue of it affecting the mitochondria. I had improvement with valtrex initially but now its affecting the mitochondria too much with worsening paraesthias yet if I miss a dose, my legs are weaker.

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Mobeen Syed MD's avatar

Did you discuss methylene blue with your doctor?

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Sarah Fudge's avatar

Also I want to say you are one of my most favourite people in the world. Thank you.

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Mobeen Syed MD's avatar

Thank you Sarah!

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Sarah Fudge's avatar

Thank you. I am in BC without a doctor. I have an NP who has no interest in helping me other than saying its anxiety. I will give it a try again. I had issues with it before because of high serotonin maybe from the mast cells but I can tolerate 3-4 mg now. I am not taking it everyday but I should. Most of my tests had to be done privately through naturopaths.

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Sarah Fudge's avatar

This is also something I am wondering.

How do we know that the S1 protein found in the monocytes wasn’t from the monocytes being directly infected by the mRNA?

How do we know that the circulating spike protein detected in people with PVS isn’t spike attached to some kind of cell from the mRNA found in the serum?

What do they mean by circulating spike protein? That never has been clearly defined. I thought spike only happens with the instructions from the mRNA from a cell. It is attached to the surface of a cell and can’t just break off.

If thats the case, I hope there is apoptosis of these immune cells.

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Lindsay Paul's avatar

Do you lock up in your paralysis with rigidness?

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Sarah Fudge's avatar

I would describe it more like a CNS rigidity. I believe its the neurons infected with herpesvirus and cause the excitotoxicity and microglia activation. The problem is the immune system cant fight it off and it continues to spread.

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Lindsay Paul's avatar

That’s what my sural nerve and quad muscle biopsy returned with, however - Arkana Labs stated they have never seen the results that returned on my stains they were so rare and didn’t even know what disease to call it. They told me my muscles were degenerating ongoing and my muscle mass may never return. It was quantified in the immediate as small fiber neuropathy.

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Sarah Fudge's avatar

Sorry what did the biopsy show? Herpesvirus?

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Lindsay Paul's avatar

“Final Diagnosis:

.. Peripheral nerve, left sural, biops!

Peripheral nerve showing no significant pathologic abnormalit

- See Comment

B. Skeletal muscle, left quadriceps, biopsy:

- Mild denervation type changes

- See Comment

Comment:

This patient's nerve biopsy shows no significant morphologic abnormality. The nerve fascicles appear to be relatively well populated by large diameter and smaller diameter myelinated axons.

The number of small

diameter unmyelinated axons appears to be relatively preserved. Only a rare degenerating myelinated axon is seen.

A few regenerated clusters are present, indicating limited prior axonal injury and subsequent successiu recovery. The overall changes are very mild in degree and may be at least partially explained by the patient's age. No morphologic abnormality is seen to readily explain the patient's reported episodic progressive muscle spasms and myokymia.

Of note: as the sural nerve is a sensory nerve it may not be representative of processes

involving motor nerves and/or motor neurons.

Congo red stain is negative for amyloid deposition. No inflammation or morphologic evidence of vasculitis is seen. Features to suggest the presence of a demyelinating process, such as onion bulbs and stripping of myelin from intact axons by macrophages as may be seen in the setting of CIDP, are not present. No abnormality of myelin periodicity (widely spaced or uncompacted) is seen to suggest the presence of a paraproteinopathy.

The mild denervation type changes seen in this patient's muscle biopsy consist of occasional scattered esterase positive atrophic muscle fibers suggesting the presence of mild ongoing denervation. No, fiber type grouping is seen to provide evidence for prior denervation and subsequent successful reinnervation. The mild denervation type changes do not readily explain the patient's reported episodic progressive muscle spasms and myokymia.

No inflammation, morphologic evidence of acquired inflammatory myopathy or vasculitis is seen in the tissue available for evaluation. No morphologic or enzyme histochemical features diagnostic for metabolic myopathy (lipid, glycogen, or mitochondria) are seen. Changes to suggest the presence of a chronic dystrophic process are not present.”

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Sarah Fudge's avatar

Muscle wasting occurs when the body breaks down muscle tissue to access protein or amino acids as a fuel. I would focus on optimizing your mitochondria health. Carnitine and ALA and ubiquinol helped me a lot initially.

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Rebecca's avatar

This is freaking awesome - thank you so much or this write up. I have had increased CD8 relative to CD4, but didn't' show up with any spike protein in the Patterson blood work.

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Mobeen Syed MD's avatar

You are welcome. Wishing you speedy health!

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Mobeen Syed MD's avatar

You are welcome!

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