Skill Level 5
Relevance:5 Technical Level:2
I will update this page if you would like to follow along with my experiences. Please add your comments and suggestions or experiences below
Page Synopsis: Step one, launch site
Step two implement 5 star protocols and report effects on this page
Personal Plan
page 74
Let's go back to the homepage index and review each item. Placing a rating system of 1 to 5 stars by each item in terms of importance and a corresponding letter for the order in which I'd like to incorporate the therapy ('A' for engage in first, 'B' for second and so on). Number of dollar signs indicate estimated cost of therapy (out of pocket expenses for procedures and therapies not covered by insurance, or one dollar sign indicates it is covered or is inexpensive. High number of dollar signs may indicate therapies that require purchase of expensive equipment or repeated regular appointments). Ratings subject to change with experience and evaluation
1) Testing A $$$
The most difficult complicated and confusing part of treatment. It is also the most important and must be completed first. There are simply too many tests to do all of them, so I (or an advocate, case manager or clinician) must determine which tests to take. Then I (and or they) must evaluate them.
Unfortunately I can not rely on the doctors whom I have already visited to evaluate the tests, as in their view, the tests do not indicate anything out of line, out of the ordinary or amiss, (which is clearly not the case as my, and CFS patients' suffering is palpable and measurable).
I have joined a website 'SelfHacked' which included in the subscription fee allows for uploading of unlimited amounts of test results for evaluation
Though it will be expensive to do all the chosen tests, I have only marked 3 dollar signs as the cumulative cost, as though the process is expensive, it will still cost less than some of the more pricier 'out of pocket' treatments (which I've assigned four or five dollar signs).
After initial testing, tests will be required again to evaluate the efficacy of treatments I've engaged in.
Some of the tests are exciting, such as the SPECT or R2t* tests which will show the state of my brain as per which neurons and brain regions are in the normal range, and which show negative effects of CFS or TBI
As they say "a thousand mile journey begins with the first step"
2) CFS
2a) PEM Post Exertional Malaisse B $
The worst part of CFS, in my experience. This is why I am so eager to trial some of the proposed therapies, such as administering Corticosteroids. The suggested medicines are either inexpensive, covered by my insurance or both. The medicines address only symptoms, and will (probably) not change the underlying cause(s) of CFS, and must be taken regularly
2b) HRT TRT B $$$
Huge success has been garnered by CFS patients of doctors skilled in the arena of Hormone Replacement Therapy. It will be costly and time consuming having repeated visits and check ups with a private practice doctor for this course of treatment (it is necessary to visit private doctors or clinics for this therapy as HRT has typically been administered in only a narrow accepted range of medical issues (of which CFS has yet to be encompassed in that range). The good news is it is conceivable that while the treatment will necessarily be an ongoing course of action, we may find it to be the only treatment required
2b i) Cortisol A
Must clear fungal infection (on feet and chest) before taking steroids
2b ii) Hypothyroidism A
2b iii) Progesterone A
2c) Supplements and Nutrition C $$
Though hereto most of the literature and patient experience has focused on supplements and supplementation, in the many years of trial experience (with a few noted exceptions) I have not personally found it to be effective medicine. That said I have not yet tried Nootropics, which has renewed my interest and hope for medicinal supplements
2c i) Nootropics
2c i a) Nimopedine B
2c i b) Sulbutiamine B
2c i b) Piracetam C $$
2c i c) LDN B $
2c i d) Cerebrolysin B $$
2c ii) CBD Oil
2d) Allopathic Medicines "offlabel"
Lisdexamfetamine Vyvanse A $
Seems like an excellent medicine to cover symptoms right away, not 5 stars as for possibility for
abuse and amplification of personality (hypersexualised)
Strange as it sounds, seems to hold promise
2d i) Amantadine B $
This medicine has shown to be helpful with both CFS and TBI patients which is why it's at the top of my list. It can not be taken with Venlafaxine, which necessitates visits with my psychiatrist for the proper adjustment to my prescription regiment. A good alternative to Venlafaxine (and perhaps to SSRI's and SSNRI's) may be Amisulpride
2d ii) Corticotropin Releasing Factor Receptor type 2 agonist CT38 C $
By far the most exciting entry on the list of CFS medicine as it is the first designed specifically for CFS patients. Our community is holding fast in thrilled anticipation for the results of it's evaluation and deployment
2d iii) Mestinon B
2d iv) Amisulpride B
2d v) Midodrine (ProAmatine B
2d vi) Nexavir Kutapressin B
2d vii) Isosorbide Dinitrate B
2d viii) Atorvastatin B
2e) Chronic Infections Treatment (mycoplasma, EBV, HHV6 etc D $
2e a) Antivirals
2e a i) Rituximab
2e a ii) Azithromycin (Xithromax)
2f) Steroids, Low Dose Hydrocortisone
2f i) Corticosteroids as Potent PEM Shielders A $
2f ii) Prednisolone B
2f iii) Pregnenolone B
2g) Nad C
2h) Gdf11 C
2h) Venlafaxine
2i) TCS Transcranial Stimulation C $$$$
2j) Sleep Apnea machine and snore surgery A
2k) Other Medicines
2k a) DNA profiles, Epigenetics, Crispr and gene editing
2l i) HBOT A $$$$$
2l ii) Ubi A $$$$
2l iii) Fecal Transplant A $
2l iii a) The Gut Immune Brain Vagus Nerve axis and it's relation to CFS and tbi
2l iii b) Research and Success
2l iii b1) Doctor Interviews
2l iii b2) Further Questions
2l iii c) Method
2l iii e) Maintaining good gut health post FMT
2l iii f) Donor Screening Questionnaire
2l iii l) donors
2m) FIRS C $$$$
2n) Vagus Nerve Stimulation C $
2o) Controversial Treatments C
3) Ptbicf
3a) Cognition, Healing from Stroke also helpful with tbi
3a i) Testing, Testing Laboratories, Treatment Centers, Specialists and Clinics
3a ii) Testing for amount and kind of brain cells by evaluating R2t* signal from MRI scan
3a iii) Hormonal testing A
3a iii a) Hormone Replacement Therapy (HRT) A
3a iii b) Steroid Replacement Therapy A
3a iii) Diruption in Blood Brain Barier and (mast cell or astrocyte) production cytokine
3a iv) Stress (perhaps not responding properly to stress)
3aa i) HBOT
3aa ii) Peptide description
3aa iii) Peptidergic Therapy A
3aa iv) Links
3b i) Pentoxifylline B
3b ii) Troxerutin flavonoid and Cerebroprotein hydrolysate (TCH B
3b iii) Donepizil B
3b iii) Disciplines and Areas of Study
3b iv) Further research Medicines and Topics of Interest
3e) Stem Cell therapy and Stem Cell Precursor A
I would like to sign up for trials
4) OCD
4a) Ketamine *A
5) Drain, ELIMINATE, REBUILD (TISSUES & PATHWAYS), DETOX
5a) Parasite Testing and Cleanse *B
5c) Further Research
5c i) Links
THE 12-STEP SHOEMAKER PROTOCOL
Very Severely Ill "ME/CFS" Patient Gets a New Diagnosis, New Treatment Approach & Major Improvement | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
Therapeutic Treatment of Long Covid as applied to chronic fatigue syndrome
1) BC 007
2) Tollovid
3) Extracorporeal Apheresis
4) Ivermectin
5) ct38
7) Transcranial Direct Current
8) Long COVID: Latest on Research and Treatments
9) https://www.healthrising.org and https://phoenixrising.me
1) BC 007
1a) Further patients benefit from drug against Long COVID › Friedrich-Alexander-Universität Erlangen-Nürnberg
https://www.fau.eu/2021/08/27/news/research/further-patients-benefit-from-drug-against-long-covid
1b) Berlin Cures...? Could BC 007 Help With Long COVID and ME/CFS?
https://www.healthrising.org/blog/2021/12/30/bc-007-berlin-cures-long-covid-chronic-fatigue-syndrome
1c) BC 007 Long Covid 2022
1d) bc 007 chronic fatigue syndrome
1e) BC 007 - AdisInsight
https://adisinsight.springer.com/drugs/800047946
1f) Seite nicht vorhanden - Universitätsklinikum Erlangen
https://www.augenklinik.uk-erlangen.de/forschung-und-lehre/recover-projekt/medien
1g) BC 007: New drug combats fatigue | In Good Shape - The Health Show | DW | 06.03.2022
https://www.dw.com/en/bc-007-new-drug-combats-fatigue/av-60915684
1h) BC007_miracle_in_need_of_explanation_141221.pdf
https://www.kinder-verstehen.de/wp-content/uploads/BC007_miracle_in_need_of_explanation_141221.pdf
2) Tollovid
2a) Tollovid chronic fatigue syndrome
2b) Case Study #2: PASC (Long COVID) and its resolution with Tollovid®
2c) Amazon.com: Tollovid ™ Maximum Protection Natural Dietary Supplement for Immune Support : Health & Household
https://www.amazon.com/Tollovid-Maximum-Protection-Natural-Supplement/dp/B09G7VFB58
2d) Fenben LAB Fenbendazol 444mg, Purity >99%, by Fenben Lab, Certified Third-Party Laboratory Tested, Analysis Report Included, 90 Caps: Amazon.com: Industrial & Scientific
2e) Todos Medical Releases Preliminary Data From IRB-Waived Tollovid® Market Research Study in Acute and Long COVID :: Todos Medical Ltd. (TOMDF)
2f) Tollovid™ + Long COVID: Exploring Viral Persistence
https://todosmedical.com/long-covid-data-report
2g) Todos Medical Reports 2nd Long COVID Case Study and
3) Extracorporeal Apheresis
3a) Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8209771
3b) extracorporally filtered and cleaned with the use of Heparin, which is then removed again before the blood is being fed back into the body. The Heparin binds to various inflammation inducing components in the blood plasma
3c) Apheresis
4) Ivermectin
4a) FLCCC Alliance (Front Line COVID-19 Critical Care Alliance, Long Covid therapy protocol including Ivermectin
https://covid19criticalcare.com/covid-19-protocols/i-recover-long-covid-treatment
I-RECOVER Long COVID Treatment
Long Haul COVID Syndrome (LHCS)—commonly known as long COVID—is characterized by prolonged malaise, headaches, generalized fatigue, sleep difficulties, hair loss, smell disorder, decreased appetite, painful joints, dyspnea, chest pain and cognitive dysfunction.
Up to 80% of patients experience prolonged illness after COVID-19. Long COVID is not only seen after COVID infection but is also being observed in some people who have received vaccines (likely due to monocyte/microglia activation by the spike protein from the vaccine). Long COVID may persist for months after the acute infection and almost half of patients report reduced quality of life.
Patients may suffer prolonged neuropsychological symptoms, including multiple domains of cognition. A puzzling feature of long COVID is that it is not predicted by initial disease severity; it frequently affects mild-to-moderate cases and younger adults who did not require respiratory support or intensive care.
The symptom set of long COVID is, in the majority of cases, very similar to chronic inflammatory response syndrome (CIRS)/myalgic encephalomyelitis/chronic fatigue syndrome. An important differentiating factor from CIRS is the observation that long COVID continues to improve on its own, albeit slowly in the majority of cases.
Another important observation is that long COVID includes more young people compared to severe COVID, which affects older people or persons with co-morbidities.
Long COVID is highly heterogeneous and likely results from a variety of pathogenetic mechanisms. Furthermore, it is likely that delayed treatment (with ivermectin, etc.) in the early symptomatic phase results in a high viral load (high spike protein load), which increases the risk and severity of long COVID.
The approach outlined in the I-RECOVER: Long COVID Treatment Protocol is a consensus based on a collaboration led by Dr. Mobeen Syed (“Dr. Been”), Dr. Tina Peers, and the FLCCC Alliance. The approach should be individualized according to the patient’s clinical signs and symptoms.
As with all FLCCC protocols, aspects may change as scientific data and clinical experience in this condition evolve. Thus it is important to check back frequently to receive notification of any protocol changes
5) ct38
5a) Clinical trial provides preliminary evidence of a cure for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Long Covid
5b) AXA1125 ct38 New “Long Covid” Treatment Looks to Improve Patient Feeling and Function
7) Successful Treatment of Post-COVID Symptoms With Transcranial Direct Current Stimulation
8a) Long COVID: Latest on Research and Treatments
8b) Long Covid patients, in search of relief, turn to private company
https://www.nbcnews.com/health/health-news/long-covid-patients-private-company-help-rcna9035
8c) A systematic review of nutraceutical interventions for mitochondrial dysfunctions in myalgic encephalomyelitis/chronic fatigue syndrome - PMC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7890871
8d) Successful treatment of prolonged COVID-19 with Bamlanivimab in a patient with severe B-Cell aplasia due to treatment with an anti-CD20 monoclonal antibody: A case report - PubMed
https://pubmed.ncbi.nlm.nih.gov/34868871
8e) Long COVID treatment protocol - Google Search
https://www.google.com/search?sxsrf=ALiCzsb1PyMGKqg_DGsxnF12Np6dzCNNoA:1658769392714&q=Long+COVID+treatment+protocol&sa=X&ved=2ahUKEwjz1KrDxZT5AhWjD0QIHd09Bh0Q1QJ6BAgqEAE&biw=1498&bih=961&dpr=0.9
8f) Treatment for COVID | Johns Hopkins Medicine
https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-treatment-whats-in-development
8g) Treating patients with long COVID
https://www.apa.org/monitor/2021/07/treating-long-covid
8h) 11 things doctors have learned about long COVID
https://health.ucdavis.edu/news/headlines/11-things-doctors-have-learned-about-long-haul-covid/2022/02
8i) Can Long COVID Be Treated? - The Atlantic
https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/
8j) Successful treatment of prolonged COVID-19 with Bamlanivimab in a patient with severe B-Cell aplasia due to treatment with an anti-CD20 monoclonal antibody: A case report - ScienceDirect
https://www.sciencedirect.com/science/article/pii/S2213007121002227
8k) One U.K. trial is transforming COVID-19 treatment. Why haven't others delivered more results? | Science | AAAS
https://www.science.org/content/article/one-uk-trial-transforming-covid-19-treatment-why-haven-t-others-delivered-more-results
8l) Frontiers | Case Report: Neutralization of Autoantibodies Targeting G-Protein-Coupled Receptors Improves Capillary Impairment and Fatigue Symptoms After COVID-19 Infection
https://www.frontiersin.org/articles/10.3389/fmed.2021.754667/full
9) https://www.healthrising.org and https://phoenixrising.me
9a) https://www.healthrising.org
9b) Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums
9c) Chronic Fatigue Syndrome (ME/CFS) Research | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/forums/chronic-fatigue-syndrome-me-cfs-research.15
9d) Treatment | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/forums/treatment.11
9e) Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/#getting-better.1
9f) Recovery Stories | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/forums/recovery-stories.66/
9g) Health News | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/forums/health-news.101/
9h) General Discussion | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/forums/general-discussion.109/
9i) https://phoenixrising.me
10) https://forums.phoenixrising.me