Martin aka paused||M.E.
Senior Member
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Why should these be helpful?Ceftriaxone
Topiramate or phenytoin
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Why should these be helpful?Ceftriaxone
Topiramate or phenytoin
Any more info on these other drugs? Are they also taken as very low dose like abilify in me/cfs? Did others work when Abilify failed? Did the effect on the other drugs fade/stop working too after a while?Rexulti Cariprazine & Abilify are in the same class of drugs and all have worked for patients.
Apparently "this content is restricted in my region"... Wonder what's available in the US...It’s called delimmun by Kora Healthcare
Looks like a subsidiary of Merck sells it in Europe?Tyrosine could work… I can’t get Kuvan in Germany. Ferritin is normal
"ceftriaxone caused more extensive and prolonged disruption of the gut microbiome than piperacillin/tazobactam. Antibiotics induce gut dysbiosis, thereby enabling colonization by drug-resistant pathogens."Ceftriaxone
Topiramate or phenytoin
Neuroleptic malignant syndrome (a possibly life-threatening reaction to certain drugs). Symptoms can include:
Probably the strangest side effects I have ever heard of.trouble controlling movements of your face or tongue
waving your arms without meaning
What do you mean?Maybe taking a drug is not the right choice at all. Perhaps there are other ways of solving the problem...
I'll report if I have any positive results.I've also thought dopamine / adrenaline could be an issue, as mental exertion (even enjoyable exertion) or physical exertion both lead to PEM crashes. Unfortunately that's combined with pretty extreme weakness (I can't stand up without help), so that's quite limiting as you well know. I've also looked at glutamate / GABA - it's very hard to differentiate some of the neurotransmitter functions and balance.
I have tried various amino acids under the theory of precursors, etc. I only tried the L-Tyrosine version, but I didn't notice any effects. Maybe the other form would be more effective. I think when it's a combination of weakness and energy, it seems much tougher to fix. Many years ago when I was mild or moderate, there were many things that were helpful in different ways. Once I became more severe, the positive effects mostly dissipated.
I also have looked at Wellbutrin with interest, both for its effects on dopamine / adrenaline, and Goldstein's affinity for it. I have not tried that as of yet - I hope you have good results.
I try many supplements and I’m not a fan of taking an AD. But if it makes me better… I took the first one this morning and feel a slight increase in energy but too early to tell…@Martin aka paused||M.E. I've also considered dopamine deficiency as one of imporant factors. I tested tyrosine but for me it was a no go, if I didn't have side effects I would try to increase the doses and test it for longer. I tried a lot of aminoacids though successfully for other issues, I could see positive results within a few days or a week so they act quite quickly, sometimes even within hours, so it is best to try low doses first.
I remember an interview with Jordan Peterson who took wellbutrin for his depression, he described his condition as having no energy and feeling like moving through molasses, hard to move, he also mentioned great relief when his muscles finally relaxed, all of it struck me as something similiar to what we experience with CFS. It worked well for his depression. I didn't try wellbutrin though, I am more an advocate of more natural approaches, but I was always curious if it could help. Here is the excerpt from that interview.
I try many supplements and I’m not a fan of taking an AD. But if it makes me better… I took the first one this morning and feel a slight increase in energy but too early to tell…
Ceftriaxone
Topiramate or phenytoin
A review of different allosteric modulators of Sig-1R has been done by Vavers et al. [14]. They list
Fenfluramine as another SSRI alternative to FVX. But they also list various anticonvulsant drugs, most
of which are experimental candidates, besides Phenytoin, an affordable and repurposed anti-seizure
anti-tachycardia drug that targets voltage-gated sodium channels and calcium channels [18, 19, 20,
21, 22]. Calcium and sodium channel overactivation participate in ME pathology [15, 16]. I expect this
finding to be transferable to LHS pathology. Seizures aren't uncommon among ME patients either [23].
Another concern of ME is neuropathic pain and fibromyalgia. Anti-seizure medications such as
Phenytoin are candidates for these kinds of pain where OTC analgesics do not work [24, 25].
Therefore, while FVX provides a multi-functional mechanism during the early phase of the SARS-CoV-
2 infection, Phenytoin might be the preferred alternative to provide a multi-functional mechanism to
LHS and ME with risks and side effects that can be managed better than serotonin-mediated ones.
The safety of the therapy could be further improved by reducing the dosage of Phenytoin since the
recommended dosage is meant for epilepsy patients who have significantly increased risks for
seizures when compared to ME or LHS.
Another Sig-1R agonist that is affordable and could be repurposed with a multi-functional mechanism
for ME and LHS pathology is the early Alzheimer's drug donepezil [26, 27]. Both ME and LHS are
associated with GPC, muscarinergic, cholinergic receptor antibodies [28, 29, 30]. Neurologically active
cholinesterase inhibitors have shown positive outcomes in ME [31]. The advantage of Donezepil is
that it combines these two mechanisms, namely Sig-1R agonism and cholinesterase inhibition. It
would be another viable alternative to FVX without the serotonin-mediated risks and side effects while
adding another mechanism.
Theoretically, Sig-1R agonism and positive allosteric modulation can also be combined if the doses
are reduced adequately. The appropriate dosage could be found by slowly increasing it while checking
for potential adverse effects. A dose-finding study could clarify this question but I don't expect a
generalizable dosage since I'm generally a supporter of patient-adjusted dosing.
Hyperbaric Oxygen Therapy (HBOT) has been tried by some. It might be possible to hire a chamber.What else might be beneficial?.
Maybe taking a drug is not the right choice at all.
This is an excerpt of what I wrote Dr. Been.
Yes we've been thinking about that but the problem is: how to get in/out of the chamberHyperbaric Oxygen Therapy (HBOT) has been tried by some. It might be possible to hire a chamber.