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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
GlassCannonLife said:
How's it going @Martin aka paused||M.E. , what are you trying at the moment? Hope you're doing ok.

I just managed to trigger a massive crash (rinsing my nose with a 0.5 % povidone iodine saline) after being a bit worn out/flared up for the last few months since my vaccine shots..
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Hey mate,

I had a bad crash. I tried many things from the Goldstein list without success but pregabalin helps me with crashes. Now I want to combine my tenofovir with calcite.
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
Martin aka paused||M.E. said:
Oops typo .i meant Valcyte.
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Ah cool. Yeah I want to try some more of that. I did 3 months at 450 mg last year as that was all my doctor would prescribe.. Planning on just ordering from ADC and doing it properly in a few months.

Currently waiting on Valtrex to come in - hopefully makes it through customs ok..

You finding the tenofovir helpful?
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
nerd said:
Phenytoin is on my Todo list as well, besides donepezil, both are sigma-1 agonists/modulators and have different additional mechanisms that might be helpful with the ME pathophysiology.

This is an excerpt of what I wrote Dr. Been.



  1. The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS (2019) [10.3390/diagnostics9030082]
  2. The Mechanism of Substrate Inhibition in Human Indoleamine 2,3-Dioxygenase (2012) [10.1021/ja208694g]
  3. Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study (2021) [10.1101/2021.02.06.21249256]
  4. Adolescent and Young Adult ME/CFS After Confirmed or Probable COVID-19 (2021) [10.3389/fmed.2021.668944]
  5. Fluvoxamine alleviates ER stress via induction of Sigma-1 receptor (2014) [10.1038/cddis.2014.301]
  6. Repurposing of CNS drugs to treat COVID-19 infection: targeting the sigma-1 receptor (2021) [10.1007/s00406-020-01231-x]
  7. Antibody-mediated platelet activation in COVID-19: A coincidence or a new mechanism of the dysregulated coagulation system? (2021) [10.1111/jth.15275]
  8. Serotonin is elevated in COVID-19-associated diarrhoea (2020) [10.1136/gutjnl-2020-323542]
  9. Thrombocytopathy and endotheliopathy: crucial contributors to COVID-19 thromboinflammation (2020) [10.1038/s41569-020-00469-1]
  10. Platelet Activating Immune Complexes Identified in COVID-19 Associated Coagulopathy (2020) [10.1101/2020.11.04.20226076]
  11. Serotonin syndrome in two COVID-19 patients treated with lopinavir/ritonavir (2020) [10.1016/j.jns.2020.116944]
  12. Drug repurposing of selective serotonin reuptake inhibitors: Could these drugs help fight COVID-19 and save lives? (2021) [10.1016/j.jocn.2021.03.010]
  13. COVID-19 Pathophysiology: Are Platelets and Serotonin Hiding in Plain Sight? (2021) [10.2139/ssrn.3800402]
  14. Allosteric Modulators of Sigma-1 Receptor: A Review (2019) [10.3389/fphar.2019.00223]
  15. Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (2021) [10.1186/s12967-021-02833-2]
  16. The symptoms of chronic fatigue syndrome are related to abnormal ion channel function (2000) [10.1054/mehy.1998.0822]
  17. SARS-CoV-2 organising pneumonia: ‘Has there been a widespread failure to identify and treat this prevalent condition in COVID-19?’ (2020) [10.1136/bmjresp-2020-000724]
  18. Mechanism of calcium channel inhibition by phenytoin: comparison with classical calcium channel antagonists (1985) [pmid: 2414431]
  19. Neuroprotection by Sodium Channel Blockade with Phenytoin in an Experimental Model of Glaucoma (2005) [10.1167/iovs.05-0618]
  20. Phenytoin: an old but effective antiarrhythmic agent for the suppression of ventricular tachycardia (2013) [10.5694/mja13.10224]
  21. Phenytoin differentially modulates the affinity of agonist and antagonist ligands for sigma 1 receptors of guinea pig brain (2005) [10.1002/syn.20103]
  22. Differences in the allosteric modulation by phenytoin of the binding properties of the sigma1 ligands [3H](+)-pentazocine and [3H]NE-100 (2006) [10.1002/syn.20230]
  23. An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2011) [10.4236/nm.2011.21003]
  24. Fibromyalgia as a Localized Non-Length-Dependent Small Fiber Neuropathy, Responding to Topical Phenytoin (2019) [10.23880/mjccs-16000213]
  25. Intravenous Infusion of Phenytoin Relieves Neuropathic Pain: A Randomized, Double-Blinded, Placebo-Controlled, Crossover Study (1999) [10.1213/00000539-199910000-00030]
  26. Activation of sigma-1 receptor chaperone in the treatment of neuropsychiatric diseases and its clinical implication (2015) [10.1016/j.jphs.2014.11.010]
  27. Efficacy of donepezil in early-stage Alzheimer disease: a randomized placebo-controlled trial (2004) [10.1001/archneur.61.12.1852]
  28. Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome (2016) [10.1016/j.bbi.2015.09.013]
  29. Functional autoantibodies against G-protein coupled receptors in patients with persistent Long-COVID-19 symptoms (2021) [10.1016/j.jtauto.2021.100100]
  30. Are nicotinic acetylcholine receptors coupled to G proteins? (2013) [10.1002/bies.201300082]
  31. Trial of a Selective Acetylcholinesterase Inhibitor, Galanthamine Hydrobromide, in the Treatment of Chronic Fatigue Syndrome (2011) [10.1300/J092v02n02_04]
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Any progress on this @nerd? I'm looking at fluvoxamine being recommended for long covid due to the sigma-1 receptor agonism and saw donezepil is an option as well - sounds potentially more useful due to the cholinergic effects but also would have it's own side effects.. Heart ones sound especially concerning.

Hadn't heard of phenytoin before.

Have you explored this since your post?
 
Loomcgoo

Loomcgoo

Senior Member
Messages
342
So sorry to hear this, I'd hope you'd found an answer of sorts. I liked your posts, although it is not that I like them, just I want to show my support.
 
S

shock_master

Messages
19
Learner1 said:
Allithiamine very quickly gave me neuropathy. Pain zaps down the front of my legs.

I've taken high dose benfotiamine for 4 years, and it works well without side effects. I think the statement that it doesn't get into the brain is wrong.
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Did the neuropathy last long after stopping it?
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
shock_master said:
Did the neuropathy last long after stopping it?
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It took about a month for it to go away. It was pretty unpleasant while it lasted, numbness and tingling and painful nerve zaps down the front of both legs. I believe it happens in people with oxidative stress, which is most ME/CFS patients... Better to stick with the benfotiamine which doesn't cause it.
 
S

shock_master

Messages
19
Learner1 said:
It took about a month for it to go away. It was pretty unpleasant while it lasted, numbness and tingling and painful nerve zaps down the front of both legs. I believe it happens in people with oxidative stress, which is most ME/CFS patients... Better to stick with the benfotiamine which doesn't cause it.
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Thanks for this! Only just saw it. I had a go at 50mg allithiamine yesterday and had an intense reaction-felt very anxious and wired and I think it may have exacerbated my nerve pain. Not going to give it any more time, going to start low with thiamine HCl and likely add in benfotiamine once I've titrated up a bit.
 
S

shock_master

Messages
19
shock_master said:
Thanks for this! Only just saw it. I had a go at 50mg allithiamine yesterday and had an intense reaction-felt very anxious and wired and I think it may have exacerbated my nerve pain. Not going to give it any more time, going to start low with thiamine HCl and likely add in benfotiamine once I've titrated up a bit.
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I wanted to try it because of several rave reviews on r/cfs, but clearly it's not for me
 
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