What do you mean with „altered“. Almost everyone here has tried many supplements ands drugs.
Hi Martin!
In this case, I’m referring to continuing with contraindicated medications during the use of this protocol, such as gabapentin and drugs which affect NMDA, like valcyte -
Ammonia has similar interactions.
https://pubmed.ncbi.nlm.nih.gov/8845943/
Having said that, I’m currently exploring the logic behind why 3 people have a pattern whereby they have active coxsackie infections and in 2 cases, their historical symptoms started upon discontinuing a SSRI. The third person has also used a SSRI. They’ve also mentioned historically observing temporary benefits from dopamine modifying drugs. This points to sustained alterations around NMDA.
https://core.ac.uk/download/pdf/94982264.pdf
what do you say to the autoimmunity-trigger of your Protocol?
I haven’t seen that demonstrated at all.
The literature shows (and all observed, repeatable reports have also shown) a direct causal effect of reishi’s triterpenes and beta-glucans and an immune response that targets lytic and latent cells.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585879/
The immune activity reportedly stops when the beta-glucans are suspended.
The mechanism here is that normally, only lytic cells are detected and replaced by the immune system. This is the key reason why these viruses evade detection and have been so difficult to eliminate.
As the latent cells are now able to signal for apoptosis, providing mTOR / GDH is also normalised, this presents a much larger array of targets for the immune system to remediate.
Someone who has eg. VZV (like my father, who started on the protocol a week ago for bowel cancer and shingles) will not have a particulary pleasant time with this, as the inflammation causes pain, however people with VZV have been reporting that dosing the beta-glucans periodically (oat bran, lions mane), eg. morning only, while also using topical lignocaine allows the immune response to abate sufficiently to allow normal / comfortable sleep. By all reports, the immune activity continues to spread throughout the nervous system / skin and areas which have seen activity are not continuously targeted.
My view on autoimmunity is that they relate to the hundreds of viral antigens being produced by these infections and that the body’s immune system (which is normally quite capable of identifying and not attacking eg. symbiotic bacteria in the right places), isn’t silly enough to attack itself under normal circumstances.. however the viral antigens may provide a direct mechanism for this activity:
https://academic.oup.com/ofid/article/7/11/ofaa468/5919166
https://www.science.org.au/curious/people-medicine/epstein-barr-virus
We’ve seen situations now where a “zero” real-time PCR test for EBV, CMV correlated with “zero” results for autoimmune antibodies being tested, however this needs further testing. This was relating to off-label spironolactone.
Are you in contact with Professor Davis on your protocol? If yes: How did he react.
I have enjoyed some infrequent, yet very down-to-earth video chats with Janet. Ron is *really* busy, however has started reading my papers. I haven’t been in contact with Janet for a couple of weeks, although we intend to catch up when Ron has finished reading through them. I really look forward to that next conversation.
Professor Jonathan Edwards called your paper “pseudoscience” and that you mushed together things that doesn't fit together and that you made immunological mistakes in what you've written. What do you think about such an accuse?
I haven’t seen any updated comments from Jon since he looked at my first paper. I’m not aware of anything relating to the second or third paper. My experience over at S4ME has been very, very different to the one here, so I haven’t been participating much.
What I will say is that we’ve been contacted by, and are in regular discussions with, a number of amazing researchers and clinicians. Some clinicians have requested our cooperation in using our methods in practice and they’ll be writing additional case reports. We’re seeing community support at all levels and a high amount of interest -
In a private conversation you sent text messages of ppl who feel slightly better. But some of them where obviously mild (can go to work) or it’s nothing special you haven't read since years here on PR with „I found a supplement that helps“. I didn’t see those acclaimed remissions.
Where I’ve asked and been given permission, I’ve publically shared some people’s “thank you” messages where they’re now getting through normal life without PEM, etc.
My observation is that the key difference between “mild CFS” and “severe CFS” is the diet being consumed.
High carbohydrate diets create a downward spiral effect of cyclical pain / deterioration that pushes someone towards feeding tube usage.
This complicates things further, as every medical nutrition / feeding tube compatible product I’ve subsequently reviewed over the last 2 months has the exact OPPOSITE macros needed to pull someone back from that form of personal hell. They’re low protein (<50g), very high net carbohydrate diets, eg. 350g net carbs from maltodextrin per day.
In a model that is based on elevated GDH and impaired a-KGDH, this will lead to someone being trapped in this state.
The ongoing ROS and depletion of Acetyl-CoA prevents beta-oxidation, creates dysautonomia and creates energy deficits, oxalates, neurological disorders, etc.
The HIF alterations lead to tissue maintenance problems, collagen synthesis issues, cancers, etc.
LDL increase from EBV creates more platelet activating factor (PAF). High levels of PAF degrades the skin barrier and causes mast cell issues, etc. Acetyl-CoA depletion breaks acetylhydrolase (the enzyme responsible for metabolising PAF to lysoPAF). This may also lead to allergies, intolerances and chronic unpleasantness.
https://www.researchgate.net/public...ing_platelet-activating_factor_in_anaphylaxis
https://journals.sagepub.com/doi/full/10.1177/0394632015600598
https://www.researchgate.net/public...or_PAF_Acetylhydrolase_and_Severe_Anaphylaxis
It also turns out there is some additional modelling we can use here for something called “hyperinsulinism and hyperammonemia syndrome”, where they partially describe how high GDH causes the ROS, insulin homeostasis and ammonia issues we’ve also been describing. Variations on some of these studies will relate to GLUD1 alterations only, whereas we’re looking at GLUD1, GLUD2.
https://academic.oup.com/jcem/article/86/4/1782/2848852
https://pubmed.ncbi.nlm.nih.gov/29943084/
https://pubmed.ncbi.nlm.nih.gov/11518822/
if it was so easy to bring cells into apoptosis - congrats, you solved cancer
Thank you, that was my interpretation also. We’ve had reports from HIV positive people with similarly positive results. We’ll be including a HIV group in the upcoming trial, along with a number of cancer cohorts.
My questions seem to be harsh, but I don't see any results here. This disease underlies fluctuations. It's normal that you're better one day and worse the other day.
Well, the good part about this is that we can demonstrate the robustness of this model without inducing the immune response (which significantly confounds energy levels, symptoms) very easily.
Depending on which mechanism is used, this is still expected to create roughly 4 days of really unpleasant ammonia dumping (big crash/headache/PEM) from the purine nucleotide cycle being restored. This “dump” may be partially ameliorated by ongoing conversion to hippurate.
I'm on your protocol. So I ask out of interest!
Thank you so much in advance
Martin.
Thank you for your trust in my research.
We’re in the process of organising a pilot study / trial, primarily here in Australia (multiple countries = multiple HREC, duplicate costs).
Funds allowing (I’m currently sponsoring this trial), we’ll have cohorts of 10-20 people for each of the diseases being tested against. This may end up being 800-1000 people. This is Aline’s area of expertise.
There are still logistical details to work through, including challenges with availability of specific lab tests due to Covid. We’re also working through the fun task of materials supply chain and validation / testing - reishi triterpenes being a key concern.
Aline has also just flown back to Germany for a family emergency, so this may add some additional challenges.
If you have any questions regarding specific details of the protocol, please feel free to reach out to me here or privately, as you see appropriate. I will do my best to help answer any enquiries.
