Natural or non-prescription TNF-alpha inhibitors? Tinnitus after covid vax

[PeterPan]

We have so many RA threads, I didn't know if this is something anyone would know about. I'm looking at it because https://news.arizona.edu/story/brain-inflammation-identified-potential-target-treat-tinnitus  I think the TNF alpha cytokines could be the cause of my tinnitus increase from the (spit spit) covid vaccine. It makes sense and I'm looking for options. So far I've found ginkgo biloba listed. Anything else you've tried that worked? I've been approaching the (very obvious) inflammation from the shot for the last 3 weeks, but I want to see if I can get more targeted. Some of my other symptoms (fatigue, fog, vertigo, body susceptible to pain with repeated movement, etc) are improving, but this tinnitus is pretty resistant. The animal studies are saying it's that specific cytokine, so I just need a way to target it. 

Edited September 27, 2021 by PeterPan

[Junie]

I did research on this many years ago to treat my RA, but I didn't do a lot with it.  I did end up going gluten-free, and that was difficult enough for me to keep up with while trying to take care of a house full of kids.

I did a quick search a few minutes ago and found this link which might be helpful to you. https://www.empr.com/home/news/foods-for-managing-rheumatoid-arthritis/  It is a list of anti-inflammatory foods, some of which are specifically called out to reduce cytokine levels.

 

[prairiewindmomma]

Have you seen this? Use of steroids for covid onset tinnitus? https://academic.oup.com/qjmed/advance-article/doi/10.1093/qjmed/hcab210/6326779

TNF is a protein the body produces that causes inflammation to help stimulate the immune system. To my knowledge, curcumin (tumeric) is one of the harder hitting tnf blockers. Cannabinoids, echinacea purpurea, and some compounds from green tea are the others. 
 

TNF levels are verifiable (mostly) through blood work. If curcumin doesn’t wrap it up, I’d wonder if the tinnitus was related to age-related hearing loss or some of the head/neck trauma you’ve had. 
 

 

 

[PeterPan]

18 minutes ago, prairiewindmomma said:

Have you seen this? Use of steroids for covid onset tinnitus? https://academic.oup.com/qjmed/advance-article/doi/10.1093/qjmed/hcab210/6326779

No I had not! That seems like something reasonable my doc would throw at it. I haven't asked him. Honestly I feel like this whole vaccine thing is a suffer in the dark thing, because everything you find by googling is just no side effects, blah blah. I'd be happy to take prednisone for a while if it would take it down. It has now been a full 4 weeks.

20 minutes ago, prairiewindmomma said:

TNF is a protein the body produces that causes inflammation to help stimulate the immune system. To my knowledge, curcumin (tumeric) is one of the harder hitting tnf blockers. Cannabinoids, echinacea purpurea, and some compounds from green tea are the others. 

Yeah, that's why I was skeptical about the ginkgo idea. I'll try it just to be thorough, but the studies I found seemed to imply the turmeric (which I already take in stiff doses) is stronger. 

Hmm, blood tests for the TNF? Well you remember the "cytokine testing is a scam" comments from another poster on the thread. I don't even know how we get them in just an average, typical way. I don't get the impression the system gives a rip right now and my little tinnitus is nothing compared to people in ICU.

Yeah, I've had tinnitus for years, but it was mostly gone with the HBOT, very, very, very mild. It went up DRAMATICALLY overnight when I got the vaccine and seemed to modulate up/down with the amount of ibuprofen. I was trying to take that down, because the ibuprofen was giving me rebound headaches. So now I'm off and it just stays at this constant level that is higher than it ever was before. It's not earth shattering, but it needs to go down. It clearly corresponds to inflammation and things not being right.

Oh foo, I'm not scheduled for my annual for another month. I thought if I was seeing the doc sooner we could just talk it through. But I'm at the point where I want some things thrown at it. Not only is it the tinnitus, but there's just this overall level of inflammation that you can sort of feel. Like I was playing on the wii with ds and the repetitive motions of the controls made my fingers hurt. That has never happened to me in that way. And there was duration, so that it hurt immediately and into the next day. That's an abnormal level of inflammation for me and I want it to go down.

2 hours ago, Junie said:

 https://www.empr.com/home/news/foods-for-managing-rheumatoid-arthritis/  It is a list of anti-inflammatory foods, some of which are specifically called out to reduce cytokine levels.

Unfortunately, I eat almost all those already. I even made some really concerted efforts this week to load some anti-inflammatory foods (tart cherry juice, oats, etc.). I think hitting the steam room has given me more of a bump than anything. The research on that is pretty mixed. Overall I feel better doing it, but ears are about the same, maybe slightly, slightly lower but nothing significant. 

The bad part is I have the 2nd stupid vaccine to finish the sequence. I'm planning to space it out quite a bit, but I need a plan that both gets this inflammation down and allows me to get it down again with the 2nd shot.

If the ginkgo doesn't get it down, then I'm looking at a conversation with a doctor. I actually thought that covidlonghaulers group made a lot of sense for the efficiency of one place, get it done, look at the data. That is clearly what is going on, inflammation. So I could try my family practice doctor and tell him what I want run, try some other kind of doc, try that service. You're right though that I had no clear game plan for if the ginkgo doesn't work, lol. 

[PeterPan]

If I had prednisone lying around, I'd just take it. I mean, talk about a nothing explanation/option. I just don't think I do. Thing is, when my dad had his flare up from the Pfizer (which remember inflamed his back, landing him in rehab and a changed AL with a much higher level of care) they did steroids with limited, brief benefit. So I couldn't be guaranteed that's hitting the right thing. At that particular case study was 1 guy, one scenario, where he wasn't kicking the bug overall. I kicked it, fever broke. I just clearly have remnant inflammation that is not going away quickly.

To me the testing idea makes sense, but I'm not sure how you'd do it outside the covidlonghaulers site. I'll probably just go ahead and write them, because at this point I can't risk the 2nd shot without a game plan that both clears this up and has a way to treat it if it happens again worse.

Edited September 26, 2021 by PeterPan

[PeterPan]

49 minutes ago, prairiewindmomma said:

If curcumin doesn’t wrap it up,

The dose of turmeric I already take was just enough (most of the time) to keep the inflammation causing my asthma down. There's clearly more than that. I tried taking some extra turmeric (since obviously I have it) but my doctor said too high it is really hard on the kidneys. I wasn't sure if it was a good idea or not. 

They are 900mg capsules standardized to 95%curcuminoids, and I take 4 of those a day. That was my normal, prevax dose that just kept my everyday stuff in check. 

I think a round of prednisone would not be overkill at this point and I'd take it in a flash. I think I've probably got this latent inflammation all over, but that's not something I can particularly quantify. I'm not trying to say the vax has somehow caused a new condition. I just seem to be very prone to inflammation anyway (every doc was saying this, between my lungs, back, etc.) and this has pushed it up. But I thought of inflammation very generically, not specifically. 

I'm googling this, and it says you can take up to 8g turmeric for *short* term, that that has been done relatively safely with research. I'm just hesitant. If I crank it up and something goes wrong (like I become allergic or I don't know), then I lose a tool that has been awesome for me. 

[prairiewindmomma]

“Normal” people can have high TNF alpha levels, normally, without problems being caused in the body. It’s only when you are in the autoimmune dysfunction end of things that you kind of start to see issues. The fact that you mention it’s not only tinnitus but also other stuff in your body all reacting in an inflammatory way is not surprising. 
 

It is super common for women to have more autoimmune stuff pop up as they approach menopause. Estrogen has a protective influence on the immune system. I would be hesitant to directly link vaccine + tinnitus in my mind. Maybe, maybe not—it is hard to sort out what is correlation and what is causation. You have kind of had a pattern of escalating autoimmune stuff over the last few years with your thyroid and other stuff that seems to wax and wane. 
 

Please don’t think I am trying to shoot your idea down—it’s just dots are connecting in a different way for me and I wanted to share that in case that is helpful info…

[PeterPan]

If the ginkgo *doesn't* take care of it, then I guess I'm going to have to think through it as some kind of more systemic thing, ie. that I made worse something that was already there. I've known for years now that I creak. My joints are pretty stiff going down the stairs tonight and I tend to avoid stairs these days. So I've probably got something going on (pick a yucky word) that I was keeping at bay that got worse with the inflammation from the vax.

[prairiewindmomma]

Ugh. We were typing at the same time. You are seeing the overall inflammation patterns too.

Have you ever had cr-p and sed rate blood work done? Any of the autoimmune stuff besides thyroid?

I think when I went in to the doctor I would just point out that you have this overall pattern of worsening inflammation and see what their thoughts were without mentioning the vaccine initially. I would bring that up later in the convo—that you’ve had a kick up since then—but I would be hesitant to push his thought process with that as a lead in….

[prairiewindmomma]

Creaky knees isn’t super concerning if you have the full range of motion. Are you keeping up on doing stretching and strength training? It doesn’t have to be heavy lifting but you are trying to preserve muscles to keep your joints in line.

[PeterPan]

2 minutes ago, prairiewindmomma said:

autoimmune

Yeah, that's pretty much what I'm getting at. My dd is taking LDN and says they concluded her body issues are autoimmune. I'm just not sure how thorough the testing was. I was diagnosed with fibro years ago but the guy, although an MD/DO, was kind of a nut, not thorough, made me sick. 

So I'm happy to look at genes. It's just when she went through the fibro points with me (and this was two weeks ago) I didn't have them. I clearly did back then, and I have all kinds of vague funky generic stiffness. None of my normal blood tests for the annual visit (which I now do because I actually have a doc, woo woo) show anything. Those labs are all beautiful, and I get shooed right now. 

Total aside that feeds into the subtle processes going on argument--when I work out, I improve in flexibility and range of motion and output as I go on. Most people are the opposite, getting tired, and I actually get better 30-45 minutes into the workout or lifting, it's crazy.

I've eaten largely organic, whole foods, light on the gluten, minimal cow's milk, etc. for years now. I started with a nutritionist after I left that doctor. So whatever can be done with nutrition to hold things in check I've been doing, lol. Stress made the asthma present (it was there but super mild and the stress brought it out in spades) and frankly my stress still stays relatively high because of ds. So I think it's completely reasonable to say my body is trotting along the process (some things harder, some systems not keeping up). I buy that explanation yes. The vaccine was just a big assault. I knew it would be, sigh. 

Nothing has changed dramatically hormonally on me in the last 6 months that I can tell, so I don't think that's a *big* factor. It's probably more a consistent factor. 

[PeterPan]

7 minutes ago, prairiewindmomma said:

Ugh. We were typing at the same time. You are seeing the overall inflammation patterns too.

Have you ever had cr-p and sed rate blood work done? Any of the autoimmune stuff besides thyroid?

I think when I went in to the doctor I would just point out that you have this overall pattern of worsening inflammation and see what their thoughts were without mentioning the vaccine initially. I would bring that up later in the convo—that you’ve had a kick up since then—but I would be hesitant to push his thought process with that as a lead in….

Let me google those tests. Those are what had slipped my mind. 

[BeachGal]

Both my husband and I had a noticeable uptick in tinnitus after getting the Pfizer shots. We used our pemf devices — which would not be right for you — and they worked beautifully but it took about two weeks.

Anyhoo, for you, because you are finding hbot helpful, you might want to find an MD who has a hocatt sauna. Ask if they will turn off the pemf part and give you only the ozone sauna and maybe red light treatment. You do not breathe in the ozone. Sessions are around $100-150 in my area but I don't think you’d need too many. I’ve seen sessions for as low as $50 elsewhere.

Another idea is to buy a small jar of ozonated hemp oil. When ozone is bubbled through oil, it reacts with the lipids and creates ozonides, lipid oxidation products, which become concentrated and stable in the oil. The oil can then be applied to areas where you’d want the ozonides such as the skin of your ear canal. You could place a small amount on a q-tip and then swab your ears. Hemp oil would be the best because it can hold a lot more ozonides than other oils. Promolife sells it and it’s not too pricey.

An small study about ozone and Meniere’s Disease, tinnitus, etc.

https://www.tinnitusjournal.com/articles/ozone-therapy-and-pressurepulse-therapy-in-menieres-disease.pdf

Another test you might want to get is the Omega-3 Index which measures the ratio of omega 6 to omega 3. It’s a finger prick test that can be ordered from companies. I get mine from Grassroots Health and do it annually. OmegaQuant is also very good. If your ratio is not optimal, you can increase it by taking a good quality fish oil, and/or eating salmon eggs which you can get from Vital Choice. I am a member of Rhonda Patrick’s group FoundMyFitness and she recently discussed which fish oil brands are presently considered the best. (Fish oil supplements are tested every six months.) Nordic Natural and Carlson’s are no longer the best but are okay. Let me know if you’d like Rhonda’s current recommendations.

A really good quality magnesium, like magnesium threonate which can pass through the blood brain barrier, might be helpful as well but I’m guessing you take something like that already.

[matrips]

This may be too basic, but I’ll throw it out there just in case- do you take Quercetin, Bromelain, and NAC for inflammation?  People have had good experience with these supplements and covid, and they are supposed to help inflammation.

[PeterPan]

27 minutes ago, matrips said:

This may be too basic, but I’ll throw it out there just in case- do you take Quercetin, Bromelain, and NAC for inflammation?  People have had good experience with these supplements and covid, and they are supposed to help inflammation.

You know I tried bromelain for a day or two (I used to take it all the time) and just forgot! I need to snag some NAC this week. I had been taking glutathione, but I read some kind of study saying if you take NAC the ears actually use it to make glutathione right there in the ears to calm things down. Wild, eh? So you're right, good reminders!! Any particular brand of NAC you like? The quercetin I don't do. It's a high methyl donor and it makes my body feel really off, totally not good. 

[PeterPan]

9 hours ago, BeachGal said:

ozone sauna and maybe red light treatment.

This is making me think. See at one point the HBOT clinic was having me do this kind of weird breathing thing when I'd show up early and have time to kill. They run water through some kind of colored light and oxygen and then you breathe it through a canula. It kind of mists all the way to your ears and is supposed to be good for oxidative stress. I'm just kinda wondered if *that* was the reason my tinnitus improved earlier, kwim? It's hard to tease things apart when they're concurrent.

If I show up early, they'll probably throw me on that, hehe. 😄 

9 hours ago, BeachGal said:

Another test you might want to get is the Omega-3 Index which measures the ratio of omega 6 to omega 3. It’s a finger prick test that can be ordered from companies. I get mine from Grassroots Health

This is intereting. I had found something in the genetics about processing the different oils. I used to take all flax because the nutritionist was so diehard on it. But whatever it was I found in the genes (I don't remember) made it look like if you weren't processing right it would actually make for MORE inflammation. So I was like fine, toss half, and I went to half borage, half flax. But I have no clue about testing, hadn't heard of that. Doesn't it seem like it would be rather fraught and depend on what you ate the night before?? Like if I eat fish tonight (which I am) then some fats would go up. Or is it more of a lagging indicator test and somewhat stable?

9 hours ago, BeachGal said:

Both my husband and I had a noticeable uptick in tinnitus after getting the Pfizer shots. We used our pemf devices — which would not be right for you — and they worked beautifully but it took about two weeks.

I'm glad it worked! It seems like 2-4 weeks is the "normal" time for some of this to go down anyway after the shots. That's why I'm concerned, because I'm leaving that window and want it to go down. So are did the tinnitus flareup *repeat* with your 2nd shots? I did Moderna, so I guess I'm getting super whomped, sigh. I'm starting to wonder what my brilliant logic was on that.

[*****]

PeterPan, you may want to add the word tinnitus to your title.  I have some tinnitus,  but I am not up on  the info out there and didn't know about TNF until I finally clicked on the title to see if this thread pertained to my experiences.  Others who have experience may be missing out on this thread because they don't know either. It seems my tinnitus got louder after both of my shots. I am just learning more about inflammation and need to pay more attention to how it may affect me. But I appreciate the info on the thread and will do more reading up.  

[PeterPan]

12 minutes ago, ***** said:

you may want to add the word tinnitus to your title.

Just for you. 😄 

12 minutes ago, ***** said:

It seems my tinnitus got louder after both of my shots.

Oh dear. And when you google, there's so much hush hush about it, this tendency to blame shift or say it didn't happen. It was crazy obvious here. Woke up and boom, quite loud, like a vacuum turned out.

Right now, fwiw, it's tolerable, about the level of the other stuff I'm hearing (ds in the shower, my computer's fan, etc.). I'm pretty sure I forgot to do the cherry juice yesterday and I was both having more tinnitus *and* the overall body grumpiness I was whining about. Took the juice this morning and noticeably better, into the tolerable realm. Not gone, but tolerable. If I could have it 3X better, that would be great, lol. I only have one bottle and the tart cherry juice is wicked strong. Not sure how much I want to do it. I could try twice a day I suppose.

I still haven't gotten the ginkgo and the NAC is now also on my hit list. I do have the bromelain. As long as we're taking it *down* I'm happy. What concerns me is *up*. 

How far apart were your shots btw and what brand? I did moderna and my current plan is to wait 12 weeks. I won't go longer than that, but I'm not inclined to rush either. I want to have time to get this inflammation down and know what will take it down with the next one. I knew I was taking a risk, but I guess I also had some optimistic glibness than anything that happened would magically go away. Since it hasn't, we're now at the work to make it go away stage, sigh. 

The tart cherry juice twice a day might be smart. It's just the stupid stuff is like $10 a bottle sometimes. I'll have to see. Ok, it's on sale for $8 this week. Still ouch, but sale, right? LOL

Edited September 27, 2021 by PeterPan

[matrips]

2 hours ago, PeterPan said:

You know I tried bromelain for a day or two (I used to take it all the time) and just forgot! I need to snag some NAC this week. I had been taking glutathione, but I read some kind of study saying if you take NAC the ears actually use it to make glutathione right there in the ears to calm things down. Wild, eh? So you're right, good reminders!! Any particular brand of NAC you like? The quercetin I don't do. It's a high methyl donor and it makes my body feel really off, totally not good. 

We used to like Jarrows NAC but I couldn’t find it this past summer, so we currently have the NOW one.  We just add it in if someone is feeling sick, so no real personal experience with how it does for focused inflammation.

I hope you find something to help. 
 

eta- I saw you mentioned it’s hard to google anything adverse- there’s a lot of folks on Reddit that chime in and try to help each other with side effects, including tinnitus.  Not sure how helpful any of them are, but wanted to let you know it’s out there.  (I use Reddit for another group, but see other popular posts come through.)

Edited September 27, 2021 by matrips
To add

[PeterPan]

57 minutes ago, matrips said:

Reddit

Thanks, I will go look!

[BeachGal]

2 hours ago, PeterPan said:

This is making me think. See at one point the HBOT clinic was having me do this kind of weird breathing thing when I'd show up early and have time to kill. They run water through some kind of colored light and oxygen and then you breathe it through a canula. It kind of mists all the way to your ears and is supposed to be good for oxidative stress. I'm just kinda wondered if *that* was the reason my tinnitus improved earlier, kwim? It's hard to tease things apart when they're concurrent.

If I show up early, they'll probably throw me on that, hehe. 😄 

Find out what that is! I’m guessing ultraviolet blood irradiation (UBI) and ozonated saline. UBI (and ozone) are old timey treatments. Maybe they would let you rinse your ear with it. Seriously! Here is an article explaining UBI written by Michael Hamblin, who is one of the most knowledgeable experts on photobiomodulation (PBM). He’s a researcher at Harvard.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6122858/

I’m still bucking for you to do a Hocatt session. 😄

This is intereting. I had found something in the genetics about processing the different oils. I used to take all flax because the nutritionist was so diehard on it. But whatever it was I found in the genes (I don't remember) made it look like if you weren't processing right it would actually make for MORE inflammation. So I was like fine, toss half, and I went to half borage, half flax. But I have no clue about testing, hadn't heard of that. Doesn't it seem like it would be rather fraught and depend on what you ate the night before?? Like if I eat fish tonight (which I am) then some fats would go up. Or is it more of a lagging indicator test and somewhat stable?

The test measures DHA and EPA in the red blood cell membranes so I don’t think a hearty helping of Alaskan salmon would affect it too much...? But I’m not certain. That’s a good question. You would need fish oil (maybe krill oil is okay too) to change DHA and EPA in your red blood cell membrane. The OmegaQuant site explains why.

I'm glad it worked! It seems like 2-4 weeks is the "normal" time for some of this to go down anyway after the shots. That's why I'm concerned, because I'm leaving that window and want it to go down. So are did the tinnitus flareup *repeat* with your 2nd shots? I did Moderna, so I guess I'm getting super whomped, sigh. I'm starting to wonder what my brilliant logic was on that.

The tinnitus flare up was more pronounced after the second shot but it eventually went away.

Ask if you can get some of that water for your ear. You’d have to use it there because it breaks down fairly quickly.

^^responded in your quote above

Btw, get your NAC soon because it looks like it won’t be an OTC soon.

Edited September 27, 2021 by BeachGal

[Halftime Hope]

A collection of information, quite a bit of it with journal references:  https://selfhack.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/  

[PeterPan]

It looks like cherry juice (tart or sweet) affects MCP-1 more than TNF-alpha. https://www.memphis.edu/healthsciences/pdfs/2018martinfandf.pdf

It strikes me that you could have a scenario where you find foods or supplements that directly correspond to each of the 14 cytokines that inflame with covid (and hence the vaccine) and you target your inflammation approach to the symptoms. 

53 minutes ago, Halftime Hope said:

A collection of information, quite a bit of it with journal references:  https://selfhack.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/  

Ok, that's incredibly interesting. I'm working through that list slowly, thanks!

[iamonlyone]

1 hour ago, BeachGal said:

^^responded in your quote above

Btw, get your NAC soon because it looks like it won’t be an OTC soon.

What? Why is this? I found a few articles confirming but not why. I take this fall through spring, so I'm sad I won't be able to buy it anymore!

[*****]

3 hours ago, PeterPan said:

How far apart were your shots btw and what brand?

I had the Moderna at the prescribed schedule, 6 weeks apart? 2nd was last April. I had headaches for a few day and didn't like the feel of that. So I am not going to be quick to look for the booster. 

Last week I remember thinking as I woke, wow, I am not hearing the ringing as much, now what did I do differently? (eventually it came back). But I had been learning about the alkaline diet and trying to cut out some things to decrease inflammation (I have an old injury in 1 finger and it causes trigger finger sometimes and I can see the swelling in the finger when I eat the wrong foods). Too much use with the mouse on the computer aggravates it too.     Also, feeling soreness in the knees as I am going up and down stairs in the yard. Age related? 59 and holding 😉 

I will pay attention to the tart cherry juice. I drank some last week, but will have to use it more regularly and see if it does make a difference.

I have also taken NAC more often than quercetin on and off since March. I bought it when we travelled to ramp up my immune system. I don't get side effects and I didn't connect it to reducing inflammation, because I  had not paid attention. 

However, I had recently started to use Emerald Doctor-Formulated Allergy Health capsules for a stuffy nose. https://www.amazon.com/Emerald-Labs-Allergy-Quercetin-Bromelain/dp/B098KPCKD2/ref=sr_1_5?dchild=1&keywords=emerald+allergy+health&qid=1632715956&sr=8-5    I wanted something healthier than regular OTC stuff.  I bought it at a health food store and went by a recommendation from a clerk. I didn't really pay attention to the ingredients until I got home, and get this:    Quercetin 1000 mg, vita C 500 mg, Nettle leaf powder 300 mg, NAC 250 mg, Bromelain 250 mg, Eyebright herb powder 100 mg.

It has everything you have been talking about in an allergy supplement!  I think I will get back on that regularly and see if it makes a difference to my tinnitus.  I've never tried gingko, but will have to pick some up. 

Also, glad you added to your title😉

[ChickaDeeDeeDee]

No personal experience with tinnitus, but, have you tried or thought about trying GABA?  

I know that some people have improvement using it for tinnitus and there are papers out there about increased glutamate and tinnitus so it makes sense that balancing that out with GABA could be helpful.  GABA supplementation can end up increasing glutamate rather than reducing it for some people though so that has to be considered.   GABA also regulates the release of inflammatory cytokines and may help inhibit tnf alpha.   GABA might help with the pain too.  Looking into other ways to decrease glutamate might be a research path as well.  

There is evidence of increased glutamate levels with COVID (https://www.biorxiv.org/content/10.1101/2021.02.24.432759v1) so maybe with the shot too.  The article I linked talks about monocytes being the key to altered immune response in COVID but of course they're involved when you get the shot too.  Bruce Patterson and team has a paper about this being the case in long haul Covid and I think they've seen it in immunized people as well (but I don't know if they've published that data).  Here's their explanation of what is happening: https://youtu.be/IvWPT3YA5uY?t=51 .  I don't know much about how they're treating the inflammation, if it is sound, or how well it is working for patients - so no comment from me on the treatment that group is offering.  But,  it definitely seems like getting those monocytes that are trying to move waste out (spike protein is what covid and the shot have in common) would be a big priority in feeling better.  

So, no answers from me but hopefully this will give some additional research paths to look at.  Hope it gets better soon.  

 

[PeterPan]

8 hours ago, iamonlyone said:

What? Why is this? I found a few articles confirming but not why. I take this fall through spring, so I'm sad I won't be able to buy it anymore!

I was just coming back to ask about @BeachGal's comment on this!

[PeterPan]

1 hour ago, ChickaDeeDeeDee said:

have you tried or thought about trying GABA?  

I know that some people have improvement using it for tinnitus and there are papers out there about increased glutamate and tinnitus so it makes sense that balancing that out with GABA could be helpful.  GABA supplementation can end up increasing glutamate rather than reducing it for some people though so that has to be considered.   GABA also regulates the release of inflammatory cytokines and may help inhibit tnf alpha.   GABA might help with the pain too.  Looking into other ways to decrease glutamate might be a research path as well.  

I'll look into it. We're pretty sensitive to stuff in our house. Just getting ds off chamomile (which affects GABA) was wicked. I think we tried GABA once here and it was rough. But like you say I can think through it and read. 

1 hour ago, ChickaDeeDeeDee said:

There is evidence of increased glutamate levels with COVID (https://www.biorxiv.org/content/10.1101/2021.02.24.432759v1) so maybe with the shot too.

I had missed that, interesting.

1 hour ago, ChickaDeeDeeDee said:

monocytes being the key to altered immune response in COVID but of course they're involved when you get the shot too.  Bruce Patterson and team has a paper about this being the case in long haul Covid and I think they've seen it in immunized people as well (but I don't know if they've published that data).  Here's their explanation of what is happening: https://youtu.be/IvWPT3YA5uY?t=51 . 

I think I started that video and never finished, oops. But yeah, I think that's the challenge, that the disease and the vax controlled exposures are making so many things happen that when the body is not kicking it out there's a lot that could be involved. I guess I was doing my usual simple b&w thing of tackle one piece, see if it makes a difference, then try another. It seems like if the consequences are systemic (or not improving by tackling random pieces) then that overall testing is the way to go.  I was trying to skirt around it.

 

[ChickaDeeDeeDee]

7 minutes ago, PeterPan said:

I'll look into it. We're pretty sensitive to stuff in our house. Just getting ds off chamomile (which affects GABA) was wicked. I think we tried GABA once here and it was rough. But like you say I can think through it and read. 

 

From reading some of your other posts I figured GABA and surrounding issues would be something you have some familiarity with.  It is definitely a potentially double edged supplement.  And, as it sounds like you know, part of some seriously sophisticated biochemical systems in the body.   Possibly looking into ways to decrease blood brain barrier (BBB) permeability would help too (maybe for you?, but esp. for kiddo with a rough reaction to GABA - but you're probably on top of that too).   

*If* the tinnitus was glutamate related, well...  glutamate can increase BBB permeability.  And once the BBB is more permeable there will be more excitatory activity from the glutamate.  It's a really viscous cycle and I don't really know if there is anyone out there with awesome answers about what to do about it.  

 

[Paige]

Have you looked into Nad+ or NMN supplements? My son's doctor recommended those for tinnitus and it seems to really help. 

[matrips]

4 hours ago, PeterPan said:

I was just coming back to ask about @BeachGal's comment on this!

Many speculations why online- you’ll see some with a quick google.  Two main themes. What one believes is probably in line with their opinions on government and big Pharma.
One- Pharma is using NAC for new drugs being researched, due to how well NAC works for so many situations.  ie- a money play to protect future Pharma prescriptions by getting it off the supplement market.

And two- many people are using NAC successfully for viral infections, including Covid. And meds that people have found to help with Covid seemed to get panned.

It’s still available online for now, but Amazon is not allowing sales of it anymore. That’s where I used to buy it.  I stocked up, just in case. 🤷‍♀️

[PeterPan]

3 hours ago, Paige said:

Have you looked into Nad+ or NMN supplements? My son's doctor recommended those for tinnitus and it seems to really help. 

Any particular brand or dose?

[PeterPan]

15 minutes ago, matrips said:

It’s still available online for now, but Amazon is not allowing sales of it anymore. That’s where I used to buy it.  I stocked up, just in case.

this is unbelievable. So where did you find to buy it? I found a dab at vitaminshoppe, but as you say almost everything is sold out or just poof gone!

[Paige]

10 minutes ago, PeterPan said:

Any particular brand or dose?

No on the dosing, we just take as directed except when I use NMN I give 500mg instead of 250. I really like Thorne Research brand NAD with the resveracel added and we're trying Alive By Nature NMN now. I switched from NAD to NMN because David Sinclair takes it and I wanted to see if there'd be a difference. It's too soon to tell. 

[matrips]

6 hours ago, PeterPan said:

this is unbelievable. So where did you find to buy it? I found a dab at vitaminshoppe, but as you say almost everything is sold out or just poof gone!

oh my, I just looked and you're right! it was still easy enough to find a few months ago.  I see an ad for life extensions selling nac (link below).  And yes, vitaminshoppe still has some, though not the 1000mg I bought before.  I'm going to stock up a little more though just to be safe. 

Here's a link to one article on NAC and Covid.    N-Acetylcysteine to Combat COVID-19: An Evidence Review - PubMed (nih.gov)

 

N-Acetyl-L-Cysteine Supplement, 60 capsules - Life Extension

[BeachGal]

 

On 9/26/2021 at 11:45 PM, iamonlyone said:

What? Why is this? I found a few articles confirming but not why. I take this fall through spring, so I'm sad I won't be able to buy it anymore!

 

20 hours ago, matrips said:

Many speculations why online- you’ll see some with a quick google.  Two main themes. What one believes is probably in line with their opinions on government and big Pharma.
One- Pharma is using NAC for new drugs being researched, due to how well NAC works for so many situations.  ie- a money play to protect future Pharma prescriptions by getting it off the supplement market.

And two- many people are using NAC successfully for viral infections, including Covid. And meds that people have found to help with Covid seemed to get panned.

It’s still available online for now, but Amazon is not allowing sales of it anymore. That’s where I used to buy it.  I stocked up, just in case. 🤷‍♀️

It’s hard to say exactly what the reason is for pulling it but what matrips has posted is likely accurate. I could understand turning it into a standardized drug but I don't understand why it needs to be pulled as a supplement. It’s been used safely as a supplement for many years.

Walmart might still have some available. Some pharmacies, too. Get it while you can.

I’d have to check but I think well boiled chicken bones will create a broth that is full of NAC.

Edited September 28, 2021 by BeachGal

[BeachGal]

20 hours ago, Paige said:

No on the dosing, we just take as directed except when I use NMN I give 500mg instead of 250. I really like Thorne Research brand NAD with the resveracel added and we're trying Alive By Nature NMN now. I switched from NAD to NMN because David Sinclair takes it and I wanted to see if there'd be a difference. It's too soon to tell. 

My husband has been taking for almost two years now NMN (nicotinamide mononucleotide) and a special type of resveratrol that is absorbed well. Most resveratrol supplements are of poor quality and are not absorbed well. Dh does not take either for tinnitus, just general well being for old geezers — longevity. The brand he takes is RevGenetics. Every now and then, they have a good sale, and that’s when he stocks up and buys multiple bottles. We keep the containers in the fridge.

He also follows Sinclair’s advice. If you’re interested in NMN and resveratrol, Sinclair explains how he takes them and what to look for in a supplement. Sinclair has access to the really good stuff in his lab. Lucky guy! I think it needs to be mixed in with fat and ideally taken in the morning but I’m not sure. I’ll ask my husband.

 

ETA  I just asked dh and he takes RevGenetics M98 resveratrol and the NMN, nicotinamide mononucleotide, mixed into a small amount of full fat yogurt in the morning. Both are powders. Buying in bulk is less expensive and every so often, they go on sale and are advertised in e-mails.

https://store.revgenetics.com/products/m98-resveratrol-complete-m98-rc-better-than-super-micronized

https://store.revgenetics.com/products/advanced-nmn-nicotinamide-mononucleotide-25-grams

Rhonda Patrick interviewed Sinclair awhile ago. It’s on YouTube,  FoundMyFitness, if you want to watch it.

Edited September 28, 2021 by BeachGal

[Paige]

4 hours ago, BeachGal said:

My husband has been taking for almost two years now NMN (nicotinamide mononucleotide) and a special type of resveratrol that is absorbed well. Most resveratrol supplements are of poor quality and are not absorbed well. Dh does not take either for tinnitus, just general well being for old geezers — longevity. The brand he takes is RevGenetics. Every now and then, they have a good sale, and that’s when he stocks up and buys multiple bottles. We keep the containers in the fridge.

He also follows Sinclair’s advice. If you’re interested in NMN and resveratrol, Sinclair explains how he takes them and what to look for in a supplement. Sinclair has access to the really good stuff in his lab. Lucky guy! I think it needs to be mixed in with fat and ideally taken in the morning but I’m not sure. I’ll ask my husband.

 

ETA  I just asked dh and he takes RevGenetics M98 resveratrol and the NMN, nicotinamide mononucleotide, mixed into a small amount of full fat yogurt in the morning. Both are powders. Buying in bulk is less expensive and every so often, they go on sale and are advertised in e-mails.

https://store.revgenetics.com/products/m98-resveratrol-complete-m98-rc-better-than-super-micronized

https://store.revgenetics.com/products/advanced-nmn-nicotinamide-mononucleotide-25-grams

Rhonda Patrick interviewed Sinclair awhile ago. It’s on YouTube,  FoundMyFitness, if you want to watch it.

Has your DH noticed any difference since taking it?

[BeachGal]

4 hours ago, Paige said:

Has your DH noticed any difference since taking it?

He thinks it does. He’s an avid biker and bikes about 40 miles per day and participates in centuries, 100 mile races. He says the NMN/resveratrol gives him a lot of energy. The group he bikes with rides at fast speeds and he says it does seem to help.

He’s been taking 100 mg per day of NMN and will increase it to 170 mg per day (switching from capsules to powder). He might try the 1,000 mg high dose for a few months to see how it affects him. That would cost around $160 for one month’s supply but less for multiple bottles.

[Paige]

1 hour ago, BeachGal said:

He thinks it does. He’s an avid biker and bikes about 40 miles per day and participates in centuries, 100 mile races. He says the NMN/resveratrol gives him a lot of energy. The group he bikes with rides at fast speeds and he says it does seem to help.

He’s been taking 100 mg per day of NMN and will increase it to 170 mg per day (switching from capsules to powder). He might try the 1,000 mg high dose for a few months to see how it affects him. That would cost around $160 for one month’s supply but less for multiple bottles.

It's really expensive! The doctor says DS's tinnitus is related to hearing loss and thinks maybe NMN/NAD+ can repair the tiny hairs that may be causing it. It's a long shot, but whenever I quit giving him NAD the tinnitus gets worse. I'm hoping a higher dose of NMN may work well enough that he can stop taking it eventually. He doesn't need it for aging.

 

[matrips]

On 9/27/2021 at 12:45 AM, ***** said:

However, I had recently started to use Emerald Doctor-Formulated Allergy Health capsules for a stuffy nose. https://www.amazon.com/Emerald-Labs-Allergy-Quercetin-Bromelain/dp/B098KPCKD2/ref=sr_1_5?dchild=1&keywords=emerald+allergy+health&qid=1632715956&sr=8-5    I wanted something healthier than regular OTC stuff.  I bought it at a health food store and went by a recommendation from a clerk. I didn't really pay attention to the ingredients until I got home, and get this:    Quercetin 1000 mg, vita C 500 mg, Nettle leaf powder 300 mg, NAC 250 mg, Bromelain 250 mg, Eyebright herb powder 100 mg.

That link doesn’t have NAC in the allergy pill.  Did they change the formula already I wonder?  It sounds different than the one you have at home. 

[*****]

14 hours ago, matrips said:

That link doesn’t have NAC in the allergy pill.  Did they change the formula already I wonder?  It sounds different than the one you have at home. 

Interesting, it looks like they replaced it with the Camu Camu Extract, everything else is the same.  Is there a shortage of NAC? I wonder if  that why people are saying they can't find it on shelves...?

 

Added: I just found another link with what I have:   https://hsu.com/products/emerald-labs-allergy-health

 

Edited September 29, 2021 by *****
to add a link

[PeterPan]

4 hours ago, Paige said:

whenever I quit giving him NAD the tinnitus gets worse.

I'm fiddling around with the genes on this. 

https://lpi.oregonstate.edu/mic/vitamins/niacin  This article says there are multiple ways for the body to produce NAD+. When I looked at 23andme, there's a gene they look at NADSYN1. So I'm not sure how many of the processes go through that gene, but it seems conceivable that someone could have a genetic defect in making the NAD+ and thus not take advantage or get a boost from precursor supplements.

Ditto for taking NAC instead of glutathione btw. Gene is GCLC and with a defect there you wouldn't convert well.

I already taking niacin, so I was trying to figure out if there's any benefit to adding NAD+ at this point. I guess it assumes that the conversation (niacin to NAD+) that normally occurs is occuring for me. Dunno. I do remember having *zero* benefit from NAC when I took it many years ago when chemically sensitive, where I get a boost from glutathione right away.

Edited September 29, 2021 by PeterPan

[Paige]

I think NAD precursor supplements are more about epigenetics than DNA/ any specific genes. DS is young and I have no concern that he doesn’t make enough NAD on his own. He probably has plenty for routine maintenance. 
 

He has damage to his auditory processes, however- more damage than normal amounts of NAD would be able to deal with. The theory is that bored, extra, free sirtuins would find the damage and work on it, thus helping his tinnitus and maybe even his overall hearing. 
 

I don’t think taking niacin, at adult ages especially, would give you enough of a boost for tinnitus if the NAD+/sirtuin theory holds up. You probably already have fewer circulating sirtuins if you’re over 35 or 40. 

[BeachGal]

16 hours ago, Paige said:

It's really expensive! The doctor says DS's tinnitus is related to hearing loss and thinks maybe NMN/NAD+ can repair the tiny hairs that may be causing it. It's a long shot, but whenever I quit giving him NAD the tinnitus gets worse. I'm hoping a higher dose of NMN may work well enough that he can stop taking it eventually. He doesn't need it for aging.

 

Yes, it's ridiculously expensive.

Low level laser therapy, LLLT, has helped some with tinnitus and hearing loss. There are very few places in the US that offer it but that might change over the years.

If you want to learn more about it, Michael Hamblin is a researcher who has studied and written about photobiomodulation, PBM, for decades. (LLLT falls under PBM.) Hamblin teaches at Harvard Medical School.

*******

Pulsed electromagnetic field therapy, PEMF, might also be something to keep in mind for tinnitus and hearing loss. When it's used on the brain, it's called rTMS, repetitive transcranial magnetic stimulation, which is a type of PEMF. I haven't mentioned it because PeterPan is concerned how she would respond to it. I try not to blather on in those cases -- like I'm doing now. LOL. 

Anyway, PEMF is able to regrow tissues such as muscle, bone, etc. I would think it could be used to help regrow ear hairs, maybe if combined with exosomes but I'm just guessing here. (It can also be used to alleviate pain and tamp down inflammation.) NASA uses it. The engineer who designs NASA's devices, Bob Dennis, has a YouTube channel where he discusses PEMF and answers questions. He's very knowledgeable and will answer questions. He is also writing a book about PEMF.

If you want to read more about how it's used on people already, Dr. Pawluk, an MD in the US, uses it quite a bit and writes about the research and his findings. He has a website.

I'm a big fan of PEMF and have used it for about 10 years to treat any pain and areas where I've had cartilage problems, like my knees. Dh and I used it when tinnitus cropped up after our second Pfizer shots. I think it's fabulous and way too underutilized.

Your son is young but if you don't find something that works, LLLT and PEMF might be some possible treatments to consider at some point.

[PeterPan]

On 9/27/2021 at 1:33 PM, Paige said:

No on the dosing, we just take as directed except when I use NMN I give 500mg instead of 250. I really like Thorne Research brand NAD with the resveracel added and we're trying Alive By Nature NMN now. I switched from NAD to NMN because David Sinclair takes it and I wanted to see if there'd be a difference. It's too soon to tell. 

Ok, I *think* I've sorted this out.

https://www.amazon.com/Thorne-Research-ResveraCel-Nicotinamide-Resveratrol/dp/B097Z5387H/ref=sr_1_7?dchild=1&keywords=nicotinamide+riboside&qid=1632936053&sr=8-7  This is the Thorne product, and it's not NAD+. It's NR, which the body can convert to NAD+. There are mixed studies on this showing that it might land in some locations vs. others, might not be useful at all unless you have mitochondrial disorder (because the body limits the amount in the tissues and only uses what it needs), and more. 

https://www.sciencedirect.com/science/article/pii/S155041312030190X  So here's a random study on whether niacin (another potential precursor) can convert over to NAD+, and apparently it can. But you run into the same questions about which tissues it goes into. Interestingly, when I was taking the ibuprofen and having some effect on the tinnitus, I was ramping up my usual dose of niacin from 200mg a day to more like 800-1000mg (200mg with each ibuprofen and I was taking it 3-4X a day). So it may be that it wasn't the ibuprofen so much as the niacin that was helping, hence my increased complaints of tinnitus when I went off the ibuprofen. 

And of course it begs the legit question of whether you actually need $$$$$ NMN/NR type supplements or whether you can use a $4 bottle of niacin, lol. 

https://www.foundmyfitness.com/episodes/nr-vs-nmn-dosing-effects-on-nad-levels  This is an interview with that Sinclair dude about NMN, NR, etc. He's sort of incoherent and he doesn't look healthy. I'm really not sure why we're paying him so much mind. He doesn't even look healthy, so good luck hoping his $$$ supplements are the fountain of youth, lol. 

59 minutes ago, BeachGal said:

Pulsed electromagnetic field therapy, PEMF, might also be something to keep in mind for tinnitus and hearing loss.

Oh it's fascinating. I have this *faint hope* that maybe someday the HBOT will have healed my brain so much that this stuff won't bother me. Fat chance because some is clearly just inherent. (ds reacts to some towers too, sigh) Anything that injures my head makes the reactions *worse*. I seem to be tolerating towers and radiation *somewhat* better, like reacting in one hour instead of 5 minutes. 

So yeah, cool stuff. I'll just keep working around it. Given that it goes up and down with the things I'm trying, I'm hoping eventually something will work. The steam room has been amazing btw. It's not lowering the tinnitus, but everything else feels dramatically better. I tried searching steam sauna and nad levels and the only thing they suggested was that they'd go up just like the levels would go up with any form of exercise. 

The article on using niacin (cheap!) to raise NAD+ suggests that as you ramp up the tolerance improves and you no longer get flushing at various doses. This is actually true to an extent. I remember when 100 used to give me a flush, and now I don't on 200. I might on 300. And I can do that over and over during the day. However when they mention complaints, it can happen that it gives you nausea. I had that happen *one time* where I took it (just my normal dose of 100mg, nothing high) and I flushed and within a few minutes vomited. It was the craziest thing. So it's not like I'm looking to willy nilly take it that high without some caution, lol. But there is logic on how it could work and charts and studies.

I found the pretty chart! https://www.lifespan.io/news/niacin-increases-nad-significantly-in-human-trial/

Edited September 29, 2021 by PeterPan

[*****]

2 hours ago, BeachGal said:

I'm a big fan of PEMF and have used it for about 10 years

Can you make recommendations on one at an affordable price that you have had experience with? I am curious about them.

 

[BeachGal]

6 hours ago, ***** said:

Can you make recommendations on one at an affordable price that you have had experience with? I am curious about them.

 

My favorite device so far is the Magnetic Pulser made by Sota. It has a fast or slow setting and is well made. Each setting lasts about 20” but you can do as short or as long as you like. My husband and I each have one and each of our kids has one as well. $395 not including tax, shipping, etc. It is an inexpensive but reliable device and is recommended by Dr. Pawluk. PEMF machines can get up into the 10s of thousands, so something for less than $1,000 isn't too bad. Bob Dennis made some devices as well but I haven’t tried them yet.

https://www.sota.com/default.aspx?page=Magnetic-Pulser

https://www.drpawluk.com/product/sota-magnetic-pulser-mp6/

If you have any more questions, feel free to ask. We’ve used ours a lot for many different health issues.

[BeachGal]

9 hours ago, PeterPan said:

The steam room has been amazing btw. It's not lowering the tinnitus, but everything else feels dramatically better. I tried searching steam sauna and nad levels and the only thing they suggested was that they'd go up just like the levels would go up with any form of exercise. 

You might feel good after a sauna because of the effect of heat shock proteins. Sauna, hyperthermia, is one of Rhonda Patrick’s areas of interest and you can find all kinds of info about benefits and how heat shock proteins work on her website FoundMyFitness. Cold shock proteins are a thing, too, and that would be Wim Hof, the Ice Man. He did an interview with Rhonda Patrick, too.

[PeterPan]

14 minutes ago, BeachGal said:

heat shock proteins.

Yup, that's what I assumed once I learned about them. And yes, I take a nice chilling shower afterward to reverse the curse and take the inflammation down. I feel so Nordic. 😄