“Careful is when you get hurt”

In my last post I offered up a problem with the use of DAs, but no solution. My father once told me "never go to your supervisor with a problem unless you also have a solution."

The solution to the problem presented in my last post is a short-acting, natural (whatever that means) substance that has a short half-life, that can be taken during the day and will down-regulate the excitatory D1 receptors (meaning we need to agonize them), and will simultaneously up-regulate our calming D2/D3 receptors - by antagonizing them.

If you actually find and take such a substance, then your RLS may truly become the devil incarnate, until the substance is out of your system. Gives new meaning to the cliche “no pain, no gain.”

Look at what I found: “Berberine can also inhibit the release of NE via activation of adrenergic α2 autoreceptors21 and can affect DA in a manner that antagonizes D2 and agonizes D1 receptors.” BINGO! Anyone feeling lucky 😈

Here is the full article: onlinelibrary.wiley.com/doi...

As the article indicates, the problem with berberine is its poor absorption. That’s an understatement. About .36% gets absorbed into the bloodstream with the rest headed for your large intestine where it’s a great and safe anti-microbial. I think even wheat bran has a higher absorbency rate. If you can manage to get it into your bloodstream then it will be remarkably beneficial for glucose (proven) and cholesterol levels (proven) and possibly RLS (unproven). That's where all of us come in and not being "careful."

How to do this 🙄 How to make berberine more bio-available? Well there’s this article: ncbi.nlm.nih.gov/pmc/articl... But I think I’d rather have a sharp stick in the eye than comb thru this entire article. The bottom line is if drug manufacturers can get the berberine into nano encapsulated form there stands a better chance of delivery. The article also pays homage to other studies which show that Resveratrol and Baicalin (both what’s known as flavonoids), will aid in absorption of berberine.

I see there is an allegedly more bio-available form of berberine on the internet. I own both resveratrol and baicalin (and it's more potent derivative baicalein) as well as other great flavonoids like rutin and quercetin, which btw are also supposed to treat Covid 19. Berberine is similar to turmeric, I believe, and in India they know that turmeric is best absorbed in conjunction with pepper/piperine. The COQ10 I have has a black pepper extract mixed in.

I’m going to play with my berberine over the weekend. I know that when I open it up and put it in water it does not dissolve, not even close. I will try putting various flavonoids into the cup to see if any of them dissolve the berberine. I don't even know if this is a valid experiment, yet I somehow believe the scientists when they say that certain flavonoids enhance the bio-availability of berberine.

Btw, in case you're interested, the title to this post is a line from the movie -- Fast & Furious 9. I own the platinum collection.

*EDIT: Experiment done. Photographic evidence attached. I added equal parts of each substance to the berberine in water to see which, if any substance, would dissolve the berberine. To the far left is the plain berberine.

Baicalein and Piperine are the blue ribbon winners. Followed by resveratrol, then quercetin with rutin dead last in terms of dissolving the berberine. I hope you can read the names below the cups. Pepper is the furtherest one on right.

[Joolsg]

I hope you're filming all this so you can show others how to do it. A Youtube channel? I really like where you're heading with this.

[WideBody]

Lipsomal berberine.

[Hidden in reply to WideBody]

Are you going to give it a go you brave man you?

[WideBody in reply to Hidden]

No, I am currently trying ParmaGABA. One at a time.

I am not brave but if I offered a spot in a study using a biologically available form of berberine, I would definitely give it a go.

[Runninglegs2 in reply to WideBody]

Are you trying the ParmaGABA to help with the restless legs. ? I have just started taking GABA calm. It’s helps with sleep and with restless legs to a degree i think. Helps with anxiety as well.

[WideBody in reply to Runninglegs2]

Yes, I am taking it for restless legs. I just started so nothing to report yet. (Taurine and kefir appear to be helping to some degree). PharmaGABA is supposed to be a more biologically available form of GABA. That is, if you believe the marketing.

[BAK524 in reply to WideBody]

I just ordered some.

[Runninglegs2 in reply to WideBody]

Which brand PharmaGABA are you taking. I heard Thorn is a good brand. Though expensive. I’m also researching other amino acids , Taurine being one of them. Trudy Scott has some interesting information about them. I tryed tryptophan for depression but like SSRIs it seemed to aggravate my restless legs.

[Mum007]

Unfortunately I don’t think we can get pharma gaba in the uk.

[WideBody in reply to Mum007]

That is surprising, I got it of Amazon. I think it is just a different form of GABA. I tried GABA before with no real progress.

[Runninglegs2 in reply to Mum007]

I am in Australia. I ordered mine from iherb in the US

[BAK524]

This is indeed fascinating. Keep us posted!

[Hidden in reply to BAK524]

Horrible RLS last night. Not that bad since I stopped taking melatonin years ago. Have to take it first thing in the morning. After about 9 hours it is gone from system. The stupid things we do to ourselves 😕

[Guitarpickin in reply to Hidden]

Sorry you had a bad night with it. But I love your fighting spirit and sense of adventure! Thanks for keeping us informed.

[Hidden]

UPDATE: I took the berberine, not so faithfully the first month, and very faithfully the second and had to buy a new bottle of it. I sense an improvement in the RLS. By this I mean I no longer have RLS unless I eat late at night. I really haven’t noticed much improvement in my sub-clinical chronic fatigue and was hoping for that even more than the RLS since I can always knock the RLS out with the ferrous bisglycinate.

When I went to buy more berberine I was hoping to buy “liposomal” berberine but they were sold out. Berberine is the new “it” supplement. The liposomal form is $50. I would have paid it, but instead bought a popular one on Amazon that claims to be bioavailable for $22. Well it sure seems to be bioavailable based on fact it completely dissolves in water. See picture. It’s called Toniq. Anyways, I need to reiterate that I only trialed it to make sure it doesn’t have horrendous side effects. It doesn’t, as far as I can tell. I continue, as described in my post, to only recommend it for people who are trying to get their receptors back to baseline, which were screwed up thanks to DA use.

My chiropractor once said to me that when you start a new natural treatment to expect to use it for one month for every year you have had the condition you are treating. So 20 years of IBS means 20 months of whatever treatment I am trying. I feel the same is true with DA use. 10 years of DAs means 10 months of berberine before you see an appreciable improvement.

I see that more and more people are somehow getting access to methadone and buprenorphine for post DA use. I’ve mentioned this before and will do so again - I think it is incredibly important to discuss with your doctor about the best way to take these drugs. I posted an article (involving lab rats) about how taking the full dose of methadone just once a day will down-regulate your D1 receptors. That’s what you want, maybe more than anything else in the world. Multiple dosing will supposedly up-regulate them. You don’t want that. Just the opposite is true with buprenorphine -you want to take it in multiple doses a day. In the experiment it was 3. Sadly, no matter how you take these drugs they have the tendency to down-regulate the D2s. Doesn’t matter, people coming off DAs need relief and these two drugs seem to be the best out there.

My new berberine truly seems to be bioavailable. New bottle on left.

[RKM7]

So I assume you take the berberine during the day? How much does it irritate the RLS symptoms? Since I took Requip for 15 years, then as you say, I’d need to take the berberine for 15 months. I’m afraid of experiencing over a year of increased symptoms. I have just recently started managing my symptoms reasonably well with the iron, Gabapentin and evening fasting. I’m afraid to disrupt things at this point.

[Hidden in reply to RKM7]

Yes, you must take early in the day. It did not give me restless legs, however, it gave me a generalized uncomfortable feeling. Like a higher vibrational level and I don't like a higher vibrational level. That only happened the first few weeks and only when I added quercetin to make it more bioavailable. I read an article that you actually want most of the berberine to make it's way to the large intestine and that it's actually the modulation of the gut microbiome that brings about the benefits that berberine provides ie lower cholesterol, controlled blood sugar. I tended to alternate between straight up and with quercetin. Now it seems with the new berberine I have that not as much will be making it's way south.

Anyways, back to you, if I were in your situation then I would most definitely trial it for one week. If it made my night-time RLS worse then I would stop, for the time being. If it didn't make it worse then I would continue on and after two months of being on the berberine I would see if I could lower my dosage of Gabapentin with the ultimate goal of coming off of it or only taking an inconsequential (but consequential to your RLS) amount.

[RKM7]

Ok that sounds good! I’ll give it a try and see what happens! It would be wonderful to lower the Gabapentin or even come off of it entirely!

[RKM7]

How much berberine should I take? I ordered the toniq that you mentioned.

[Hidden in reply to RKM7]

Start with 500mg.

[RKM7 in reply to Hidden]

Ok

[RKM7]

Oh how I wish you were still on this forum!!! Please come back!!!I’ve been taking the berberine with quercetin for two months now (with Gabapentin, iron and evening fasting) and I no longer have breakthrough episodes of RLS!! I’m hopeful it’s the berberine! I will start to slowly decrease the gabapentin and see what happens. I’ll keep updating and hopefully you see my posts.

[Hidden in reply to RKM7]

Hi there. Pretty amazing isn’t it. Why not cut back on the Gabapentin? Reach for the stars. Every once and a while I get the feeling that RLS is more like the little mouse that roared. Small moves can make big differences ie berberine in the morning, no eating after 7pm. I bet your receptors are a thing of beauty these days. I read that after three months on berberine you should give it a rest for a month. It’s powerful medicine, not a mere supplement. It just might be one of the few “natural” substances in the world that can reverse the damage done by the DAs. Time will tell as other people give it a shot. I’m thrilled for you.

We are the ones that turn that mouse into a monster quite often. I have come to the conclusion that just about every drug out there has a direct or indirect effect on our dopamine receptors. I have been on a beta blocker for over a year and my RLS was gradually getting worse. I chalked it up to the aging process. Then I started getting RLS during the day and I thought no way something is up. Then it hit me about the beta blocker which did a magnificent job stopping my palpitations. I have been shaking my head in disbelief for an entire week as my RLS has returned to mild as well as my tinnitus. I was taking second doses of the iron at 4am even 6am. It worked, but geez what a disruption. I love it. The pain, the annoyance, the 4am loneliness, and then the knowledge and sheer amazement that follows when I figure it out. I would have it no other way.

The problem is the plague. The plague of ignorance. There are 1000s and 1000s of people prescribed these drugs everyday. Some of them are predisposed to RLS. They get RLS from these drugs or it worsens and they are prescribed DAs or even opiates and they start down a path from which sometimes there is no return or a unbelievably painful return. Some of them will come on here, but no one will tell them about the regimen you undertook to get well.

Do you think the members on here will ever take us seriously and recommend iron before bed to each and every new member? And not iron to raise ferritin, I’m talking iron as instant relief? People can take any old form of iron every other day as is constantly recommended on here and do so diligently for a year, and even get their ferritin to 200 and get zero relief as is usually (but not always) the case and proclaim iron did nothing for them. As most people find with the infusions. Makes me a crazy woman. Hence my once a month appearance on here as well as the impending 2022 elections which also makes me crazy.

Btw, I have changed irons. I now take Proferrin which is a heme iron. I just couldn’t handle the slowing of motility anymore. I always try the patches first, but they are hit and miss. When they’re a miss I take the heme iron. Heme iron is absorbed in the stomach rather than the jejunum as non heme iron is. Oh man, the stomach sucks every last drop up. None left for the colon and that means no constipation. Fair warning to anyone who is reading this - heme iron is not as safe in terms of cardiovascular events as non-heme iron. Sometimes you just gotta pick your poison.

So to summarize, first, every new member must be warned off of statins, HRT, melatonin, beta blockers, possibly metformin, calcium channel blockers, and of course all the other usual suspects. It’s not that they make our receptors worse, as the DAs do, but they make the symptoms so much worse. You can’t have RLS and be on these drugs. You have to find other ways to control the conditions for which these drugs are prescribed. Btw, your cholesterol should be at an all time low these days thanks to the berberine and fasting? Next, every new member should be told to fast every night from shortly after sundown until breakfast time. Last, but NOT least, is the highly bio-available iron taken an hour before bed. If it doesn’t provide relief take a second and even a third capsule. Then give up on the instant relief thing and just take the iron to raise your ferritin in the long run and see if that helps. Doubtful as I am of that.

RK, I leave you with my favorite quote from the movie Contact. “You humans are an interesting species, you’re capable of such beautiful dreams and such horrible nightmares. You feel so lost, so cut off, so alone, only you’re not. See, in all our searching, the only thing we’ve found that makes the emptiness bearable, is each other.” And the iron 😅. Well my love, you have experienced both, the horrible nightmare and the beautiful dream. Would you have it any other way?

[RKM7 in reply to Hidden]

You’re back!!! It’s great to read your post!!

Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. You’re advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!!

I just completed 3months of berberine so as you have advised, I’ll take a month off. Yes, my cholesterol has come down too!! I’m thrilled!!

I also continue with fasting overnight and that helps! Whenever I eat later in the evening or have sugar in my diet the RLS acts up again. I would still be suffering every night if you hadn’t recommended these changes!

I plan on slowly reducing my Gabapentin dose over time. I’m hopeful that I will only need a lower dose or maybe none at all.

Love your quote!! How true!! I’m forever grateful to have found you!! I hope you’ll always know the difference you have made in my life! I hope to stay in contact with you here whenever you check back in. 💕

[Hidden in reply to RKM7]

And I am grateful for your sense of adventure and courage. We are not walking a path here with the berberine - we are paving a path. This is uncharted woods. Because the body always struggles to get back to homeostasis I’m not sure how much benefit the berberine will provide once your receptors have returned to their pre-DA baseline. That’s why I haven’t recommended it to RLS sufferers in general. I remember when I stopped my year long use of melatonin (didn’t know that what was making my RLS insane) my RLS went silent…for what seemed like years. It was always mild and intermittent but at that point, after the melatonin, it didn’t even exist for me. The RLS slowly came rolling back into my life. I believe I had up-regulated my receptors with that tortuous melatonin/dopamine antagonist which fortunately was relieved with the iron. The point is I don’t think there is any kind of permanent benefit to be had by the berberine beyond baseline. With that said, it is possible that taking a small amount every other day, once you feel you have gotten back to pre-DA levels, that might maintain your receptors at a slightly higher functioning level than baseline. I would need to do much more research to understand the safety of taking berberine long term.

[Hidden in reply to Hidden]

Everything you may want to know about Berberine. RK, you are right on the mark. The article seems to indicate that you can see results within 3 months and that’s pretty much exactly when you noticed a benefit to your RLS. The closest thing to a “cure” for RLS might be a short-acting dopamine antagonist such as berberine. B6 may also be a dopamine antagonist. But I read that years ago and would have to revisit. healthydirections.com/artic...

[Hidden in reply to RKM7]

Hi RKM7, how are you going on the berberine?

[TeddiJ in reply to Hidden]

Hi-did you see her answer above? It's worked great for her! Thanks to our friend Lone Pine!

I, too, am taking berberine and suggested this brand. But, I have a ways to go to get a consistent 3 months under my belt. I am trying the above plan myself in an effort to avoid going back on opioids. So far I am having a rough time so I'm trying THC and the kitchen sink every night, too-lol-omg.

Anyway-I'm sure you will hear from her but I just wondered if you missed her latest post...I just happened to be re-reading this whole thread.

[Hidden in reply to TeddiJ]

Thanks TeddiJ. I did see RKM7s reply from approx 3 weeks ago however she reported that she was going to take a month off berberine and also try reducing gabapentin, so interested to see how she's getting along. Before i buy yet another supplement (!!) i'm always interested to know whether people have consistent and ongoing success with it.

Sorry to hear that you're having a rough time with your RLS. Hopefully you soon achieve an opioid free regime that works.

[TeddiJ in reply to Hidden]

Thank you so much! I see-you wanted a full update...and so do I! Lol.

[Hidden in reply to RKM7]

RK, would love to hear how you are doing these days? Teddi too. 🌹

[RKM7 in reply to Hidden]

Sorry I haven’t replied in a while. I was in a bad car accident (someone hit us head on!). Thankfully no long term injuries. We were told we wouldn’t have survived without airbags and seatbelts!

So my “experiment” with berberine was a bit postponed. Currently I’m off of the berberine and evaluating if I would need to take it again. My RLS is the best it has ever been surprisingly! I wish I had hard evidence on what has caused the improvement but I’m grateful! I also know from my own experience that my symptoms can randomly improve and worsen so I’m always careful when reporting how it’s going.

I do feel that the berberine helped me. Right now I rarely have any breakthrough symptoms. After 15 years of ropinerole, I didn’t dare hope to be doing this well. I don’t seem to need any iron at this point either although I wouldn’t hesitate to take it again if my symptoms needed it. I never did reduce the Gabapentin dose. Maybe in the future if I continue to do well. I don’t want to make too many changes yet.

Thanks for checking with me. I hope my journey is helpful to others.

[Hidden in reply to RKM7]

I was afraid something might have happened. So glad you came thru it ok. Yes, seat belts and air bags save lives. I am thrilled the RLS is at bay. When you’re in the mood, you should try replacing the Gabapentin with iron. Take two capsules and go to bed. If the RLS is still there then take the Gabapentin. Iron has fewer side effects. Keep in touch!

[Madillc]

Hi

I'd love to hear how you're all going 6-12 months later