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    • #16132

      Hi All,

      First time post in this forum – please let me know if I am posting in the wrong section.

      So my query is a two part questions.

      I’ve been coming across a lot of research involving TDP-43 and MND. I was wondering if the research is showing that the misfolded protein is a cause of some/all of the damage occuring in MND or if is it more a symptom?

      The second part to that is I came across the following paper: https://www.mdpi.com/1422-0067/21/10/3443/htm ‘Enhanced Clearance of Neurotoxic Misfolded Proteins by the Natural Compound Berberine and Its Derivatives’ which references TDP-43 and I found another paper that confirms that Berberine crosses the blood brain barrier.

      The thing that confuses me is I see papers talking about berberine being neurotoxic and potentially having neurodegenerative effects:

      and other papers pointing to a benefit:

      So in summary – does clearing misfolded TDP-43 slow down the progression of MND? Has anyone looked into berberine – is there a reason it’s not being pursued for clinical trials or is it a resource/money thing? Can anyone comment on the contrasting views on it’s neurotoxicity?

      Your help is much appreciated!

    • #16292
      Jane Kriskey

      Every day I read about something new that could do this or that! and I wonder if they have this data base now, where all research is available, why are there so many articles about all these drugs but none seem to be researched together. So you want to take this one you read about, then the next day you read about another and you think wow I should take that one, and that goes on and on. So we get confused as to what one to focus on. I just want to give my daughter all of them because who knows what one might be the magic one. We are grasping at straws and have no idea where to go.


    • #16293
      Dagmar Munn

      You are right, Jane, trying to keep up with the research on ALS treatments is confusing. One reason is that we still do not know “what” exactly “causes” ALS. Therefore, all current research is based on assumptions and trying to prove that assumption. The second is that ALS is so different from person to person. Respiratory onset… lower limb onset… upper limb onset… frontal-temporal lobe onset… They all seem to need different solutions.

      Researchers have been trying to find the “magic one” for many years now. I suggest that to be of best help to your daughter, you lower your own anxiety about finding a cure for her… and try to help her live successfully with her symptoms and slow them down by what you can have control over lifestyle and attitude.

      The 4 Ms: My Formula for Daily Living

      It may seem like you are giving up by not daily searching for a cure – – you can’t push science – – instead, be a pillar of support for your daughter. All the best to you both.

    • #16308


      I don’t know if you are going to a research neurologist or to a dedicated clinic. Questions like that are ones to ask there. I haven’t recalled pALS in the group I’m in discussing Berberine and don’t see pALS  reviews posted when I looked up. Saw no mention in ALSUntangled either I always have a list to ask about when I see my Dr at Clinic or at the University clinic I visit. I wouldn’t stack on supplements without discussion.

    • #16320

      Simeon, good call on the Berberine. And good luck finding a knowledgeable medical professional to have an intelligent conversation about it. That is a larger issue.

      You deserve credit for sleuthing on your own behalf, learning about misfolded TDP-43 aggregation and seeking out beacons of hope amongst thousands of studies written in the dense language of neurobiochemistry. Many doctors will disagree, avoiding self-interested patients armed with a “dangerous” little bit of knowledge. To be fair, they also have liability concerns and possible Covid-shellshock.

      Though Berberine has been around for ages, is well-tolerated and has remarkable antioxidant (and other) effects, I see your conundrum regarding MND: Is there a “sweet spot” serum level that will clear accumulated proteins but not smash up the mitochondria or induce glutamate sensitivity? Is that even a concern? Should I avoid it completely?

      “Be your own case study,” responded my clinic recently (to a different regimen query). In other words, go titrate yourself! I was also reminded that in-vitro, mouse and rat studies may not translate to humans, end of discussion.

      True. That we know. Thus instructed, we roll up our own sleeves.

      TDP-43 (and other proteins) clumping is definitely a hallmark of ALS but the jury is still out as to its position in the downward cascade. That jury, of course, doesn’t have the deadline you and I share. Early on, I immediately discovered scientific articles about heat shock proteins (HSPs) and their “chaperone” role in misfolded TDP-43. I asked several docs specifically about HSP fundamentals and potential inducing heat shock factors (HSFs)…to 1) little interest and 2) no response at all. One prominent, promising and inaccessible clinical trial (arimoclomol) is chasing exactly that mechanism. On another path, AMX0035 presented promising results last week to great (Today Show!) fanfare while the easily-obtained supplement TUDCA (one of 2 agents in AMX0035) was summarily dismissed for being unstandardized. Not evaluated, dismissed. Like other pALS, I’ve experienced remarkable benefits from TUDCA after “dowsing” my own dosage from myriad sources other than my doctors…long prior to the announcement. Clinical trials alone bestow legitimacy in the lab-coat world; perhaps now we can crack that conversation.

      Berberine seems to bear similar characteristics to Curcumin, which is garnering interest and is a current ALSuntangled candidate. As an aspiring one-legged gondolier I don’t have time to pursue both botany AND neurobiochem as hobbies, but their relationship & comparative mechanisms might warrant investigation. (I had an amazing response to curcumin after bombarding myself with a no-choice-but-an-educated-guess dosage.)

      I encourage you to continue rooting out interesting angles & tackling paradoxical studies. Many patients simply cave to dread, despair or resignation. Internationally there are many alternative thrusts of research not beholden to or hamstrung by constraints here. I personally think NurOwn will blow everyone out of the water, but only as part of a larger regimen if we are indeed approaching a “chronic, manageable” disease status for ALS/MNDs.

      On that note please be aware of and support H.R. 7071 Accelerating Access to Critical Therapies for ALS Act) as even six months’ delay of access to successful therapies can have such grave consequences for so many.

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