MemberYou said Lenire is the only treatment and then followed that by saying curcumin works for some. Do you know what the word "only" means?
Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
- Start date
John, quick question. I noticed the exclusion criteria is 70 dB max hearing loss. I have 90 dB to 110 dB hearing loss above 1 kHz and 50 dB loss before. From everything you have read do you think I am too far gone for this treatment? I don't mind waiting, but if I am waiting for something that isn't going to help then I just need to bite the bullet and go the CI route. Thanks.
That is something the screener can only tell you and I don't know what they're going by exactly. So the only way you can know for sure is to go through the screener.
I said that curcumin works for a very small group. Lenire works for roughly 60 % of tinnitus sufferers.
I have a question for you.
You spend a lot of time on Tinnitus Talk for someone who has a lot of responsibilities. Could you link us a study that shows curcumin help tinnitus, mister the chief science officer?
- Dec 21, 2019
- 319
- Tinnitus Since
- 2014, 10/2019
- Cause of Tinnitus
- School Band, Noxious Car Radio
That's some pretty intense hearing loss! We won't really know what FX-322 is capable of until we get the phase 2a trial results. If you can wait until end of next year for them to be published you could make a more informed choice. However know that it isn't being tested on people with your severity and you may not be a good candidate. A CI could change your whole life now, maybe a drug like this could change it in the future. It's a very intense and personal discussion for you to make.
As an aside, there is a correlation between high cholesterol and having tinntius. Studies on curcumin [1] seem to show a number of benefits that relate to reducing that problem - slightly reducing cholesterol, blood pressure and inflammation. Additionally, it seems to have some neat synergistic effects: it almost doubled the effect of plant sterols on lowering cholesterol [2].
Personally I don't notice much of a difference with my tinnitus while taking curcumin, but it could be my diet is missing something causes it to work better. It's an interesting substance and hopefully more research will shine a better light on what it can do.
[1] https://examine.com/supplements/curcumin/
[2] https://www.ncbi.nlm.nih.gov/pubmed/29291429
There's a cult-like following for something called "golden paste". It's turmeric mixed in with oil and freshly ground black pepper. You can Google for the recipe if you're interested. They claim that the turmeric is better than curcumin because there are more active compounds in turmeric than just the curcumin. It seems to cure just about everything. I think it's probably a good supplement to take but some of the claims may be a bit over the top.
I just had a visit with a doctor that did a large panel of blood work on me and he said my anti-inflammatory markers where the lowest he as ever seen and he attributed that to my massive turmeric/curcumin diet.
What is your daily dose? I just started taking 1000mg of turmeric extract curcumin c3 pill capsules yesterday.
It's both. Started with perfect hearing, but it started to fall much quicker than most. It has to be some type of genetic factor.
Agreed, most everything I have read is that when you get to a certain point in hearing loss then this may not work at all. I think that's why they have the 70 dB limit. Even 70 dB is a pretty good hearing loss. It may be too late for me, but I'm going to keep holding out. At least for now the CI route is permanent and if something does come out I would like to at least give it a shot.
Thanks for all the replies!!!
Sorry to hear that. That's a pretty significant amount of hearing loss. If it helps, I believe Otonomy has something in the works for more severe hearing loss (OTO-6xx, I think) and I also believe Dr. Chen at Harvard's approach might be useful there, too. I still think you might get some improvement with Frequency Therapeutics, too. I really wish you could have gotten into the trial.
Coleoptere
Member
CFG-166 Novartis is in their trials also including severe hearing loss. Anyway you might contact them. As for Frequency Therapeutics: theoretically as long as there are support cells they can multiply them into hair cells.
CFG-166 depletes the supporting cells... and this could be bad for future treatments. So the question is does anyone over 70 dB loss have supporting cells left or have they died as well. I don't think there is an answer to that question. Either way, I'm holding out to see what happens with FX-322. Hopefully the trial comes back with some good news.
I didn't try to get into the trial. I thought about it, but don't meet the criteria.
- Dec 21, 2019
- 319
- Tinnitus Since
- 2014, 10/2019
- Cause of Tinnitus
- School Band, Noxious Car Radio
If FX-322 works (pretty big if, keeping my hopes reasonable) then it may be a matter of finding a way to deliver it deeper in the cochlea for cases like yours. Plus even a partial recovery may be possible, which I imagine would still be pretty life changing for you.
Also requires that you surgically REMOVE the eardrum, drill a hole in the cochlea with a laser, and then inject the viral vectors into the cochlea and then re-attach the eardrum.
- Dec 21, 2019
- 319
- Tinnitus Since
- 2014, 10/2019
- Cause of Tinnitus
- School Band, Noxious Car Radio
I believe it is to keep the viral vectors from getting in your middle ear and injecting your middle ear epithelium with ATOH1.
Are these synapses the same elements which are said to regrow along with the new hair cells once the regeneration process is triggered by the FX-322 drug? It is believed that the auditory nerve detects the new hair cells and autonomously connects to them (through synapses, I guess) as a result of the regeneration process… or are we talking about two different types of synapses??
I'm almost certain that to become viable as a working portion of the auditory system, these synaptic connections must and will be restored. Even Audion's REGAIN may be restoring these connections.Are these synapses the same elements which are said to regrow along with the new hair cells once the regeneration process is triggered by the FX-322 drug? It is believed that the auditory nerve detects the new hair cells and autonomously connects to them (through synapses, I guess) as a result of the regeneration process… or are we talking about two different types of synapses??
HootOwl
Member
Are these synapses the same elements which are said to regrow along with the new hair cells once the regeneration process is triggered by the FX-322 drug? It is believed that the auditory nerve detects the new hair cells and autonomously connects to them (through synapses, I guess) as a result of the regeneration process… or are we talking about two different types of synapses??
I believe if you have IHC damage/death then these reconnections happen after treatment because IHC are the site of synaptopathy. A newly regenerated IHC should have new synapses to go along with it. This is what allows the dendrites to reconnect.
If you have mainly OHC damage/death then it remains to be seen if FX can regrow synapse or nerve fibers to connect with an already intact IHC. I could not glean the answer from their papers, and my email went unanswered in this regard.
My current understanding is that it does not but it's hard to tell.
HootOwl
Member
I should add that I think we will all need a combination of hair cell and synapse regeneration, and imo the order is going to end up being important. A drug that regenerates your IHC synapses isn't going to work if your IHC is gone.
My thought is you do FX-322 first, then do clean up with PIPE-505/OTO-413. Good news is that order is how the drugs will be arriving to market.
My thought is you do FX-322 first, then do clean up with PIPE-505/OTO-413. Good news is that order is how the drugs will be arriving to market.
HootOwl
Member
I haven't seen the evidence either, but sometimes this stuff gets buried in the papers and I can inadvertently gloss over it. I don't think it can but I didn't want to make a definitive statement without the researchers weighing in to corroborate. Answer my email FX senpai plz
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