Namenda (Memantine)

[leokitten]

I took memantine for years for ME as part of a larger protocol. Didn’t work, didn’t do anything or cause any improvement other than give me a terrible side effect of vertigo and labyrinthitis-like symptoms. I thought it was ME causing this for so long and took me a while to figure out no it was the damn memantine. I found it to be a totally useless med for ME.

 

[Hoosierfans]

Memantine is also on my list of things to try and discuss w the neuroimmunologist I’ll see in a month for my newly diagnosed autoimmune encephalitis and other autoimmune neuro disorders.

It’s exactly the NMDA and D2 effects that put it on my list of meds to try.

 

[Learner1]

And i have spent the last 11 years trying every possible supplement there is with ZERO benefits. I'm ready to take some chances before i see the rest of my life pass me by while i'm imprisoned in my bed.

I'm sorry, but supplements do change one's biochemistry. It's impossible that they do nothing.

However, for the most part, they do not work by themselves, but in concert with cofactors to make entire pathways and groups of pathways work. I have seen many many many people here say supplement X doesn't work, but it becomes very apparent when you inquire, that they didn't take the needed cofactors. So, in that case, they wouldn't work.

The other thing that can happen is that there is some missed overriding thing going on that is so bad that it outpowers the benefits of any supplement. Let's take arsenic toxicity for example, which impairs ATP production. Or an active case of Epstein-Barr. Or a genetic problem where a specific enzyme does not work. There are many other things like this, and again, I've seen people who claim that they're doctors don't think anything's the matter with them, when they switch doctors and get proper testing, uncover issues like this, which, when treated, and then supplements are taken but things work a lot better.

So, if supplements aren't working, it's a clear sign that someone's doctor hasn't dug hard enough, and more testing and attention to details is needed.

 

[Learner1]

Same here

It's helpful if you separate the quote from what you want to say, that way someone else can quote it.

You didn't give a brand or dose of curcumin or boswellia..

 

[nryanh94]

It's helpful if you separate the quote from what you want to say, that way someone else can quote it.

You didn't give a brand or dose of curcumin or boswellia..

I took Curcumin 500 with bioprene by Pure Encapsulates at 2000mg a day for almost a year and it didn’t next to nothing for me.

 

[katabasis]

I took Curcumin 500 with bioprene by Pure Encapsulates at 2000mg a day for almost a year and it didn’t next to nothing for me.

I'm not convinced that piperine actually does enough to overcome curcumin's bioavailability issues. Piperine appears to improve intestinal absorption of curcumin, but it is quickly conjugated in the body and may not be active or able to cross the blood-brain barrier. ("Although curcuminoid and piperine concentrations were readily measured in plasma following glucuronidase/sulfatase treatment, unconjugated concentrations were consistently below the assay thresholds (0.05-0.08 μM and 0.6 μM, respectively").

From what I've read, liposomal stuff like Longvida is your best bet for bioefficacious curcumin on the market. Not speaking from personal experience though, just the literature.

 

[Martin aka paused||M.E.]

It's helpful if you separate the quote from what you want to say, that way someone else can quote it.

You didn't give a brand or dose of curcumin or boswellia..

Curcuma 2 g per day
Boswellia 1g per day

 

[Learner1]

Try 8g of this and let me know if it does nothing. I found it far superior to a dozen other well-known "high potency" brands, reducing inflammation, swelling, etc. It helps my IVIG headaches. It also has antioxidant, phase 2 detox, and anti-cancer properties.

https://shop.designsforhealth.com/curcum-evail-softgels

There's also a lot of evidence that it's helpful:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

https://link.springer.com/article/10.1186/1742-2094-11-59

https://www.healthline.com/nutritio...d-health-benefits-of-turmeric#TOC_TITLE_HDR_3

https://pubs.acs.org/doi/abs/10.1021/jf0723965#

https://link.springer.com/article/10.1007/s11010-008-9949-4


As for boswellia, it too, is backed by scientific evidence. I use Thorne Research Boswellia to reduce my IVIG induced headaches.

https://www.medicalnewstoday.com/articles/326599#benefits

https://www.mdpi.com/1422-0067/20/17/4101

 

[Martin aka paused||M.E.]

Try 8g of this and let me know if it does nothing. I found it far superior to a dozen other well-known "high potency" brands, reducing inflammation, swelling, etc. It helps my IVIG headaches. It also has antioxidant, phase 2 detox, and anti-cancer properties.

https://shop.designsforhealth.com/curcum-evail-softgels

There's also a lot of evidence that it's helpful:
View attachment 43248

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

https://link.springer.com/article/10.1186/1742-2094-11-59

https://www.healthline.com/nutritio...d-health-benefits-of-turmeric#TOC_TITLE_HDR_3

https://pubs.acs.org/doi/abs/10.1021/jf0723965#

https://link.springer.com/article/10.1007/s11010-008-9949-4


As for boswellia, it too, is backed by scientific evidence. I use Thorne Research Boswellia to reduce my IVIG induced headaches.

https://www.medicalnewstoday.com/articles/326599#benefits

https://www.mdpi.com/1422-0067/20/17/4101

How much Boswellia

 

[Learner1]

How much Boswellia

On my bad days, I take 2g every 4 hours.

 

[Martin aka paused||M.E.]

On my bad days, I take 2g every 4 hours.

I have to get MCP-1, IL-1beta and IL-8 under control

 

[nryanh94]

Try 8g of this and let me know if it does nothing. I found it far superior to a dozen other well-known "high potency" brands, reducing inflammation, swelling, etc. It helps my IVIG headaches. It also has antioxidant, phase 2 detox, and anti-cancer properties.

https://shop.designsforhealth.com/curcum-evail-softgels

There's also a lot of evidence that it's helpful:
View attachment 43248

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

https://link.springer.com/article/10.1186/1742-2094-11-59

https://www.healthline.com/nutritio...d-health-benefits-of-turmeric#TOC_TITLE_HDR_3

https://pubs.acs.org/doi/abs/10.1021/jf0723965#

https://link.springer.com/article/10.1007/s11010-008-9949-4


As for boswellia, it too, is backed by scientific evidence. I use Thorne Research Boswellia to reduce my IVIG induced headaches.

https://www.medicalnewstoday.com/articles/326599#benefits

https://www.mdpi.com/1422-0067/20/17/4101

Are you suggesting 8g daily? That would run close to $200 a month

 

[Learner1]

I have to get MCP-1, IL-1beta and IL-8 under control

Er, do you know why they're elevated, particularly MCP-1. Perhaps you have more than just ME/CFS?

Are you suggesting 8g daily? That would run close to $200 a month

I suggested that dose because I'd find it hard to believe one would not feel the positive effects at that dose. I only use that dose for acute inflammation, and only take 2g daily.

 

[Martin aka paused||M.E.]

Er, do you know why they're elevated, particularly MCP-1. Perhaps you have more than just ME/CFS?

I suggested that dose because I'd find it hard to believe one would not feel the positive effects at that dose. I only use that dose for acute inflammation, and only take 2g daily.

Studies show elevated IL1b and MCP1 in ME. IL8 psoriasis

 

[frozenborderline]

Apparently memantine is only supposed to work for severe Alzheimer's patients. What sort of a doctor prescribe this for you, with what rationale? And what labs did you have that showed that you had a memantine deficiency?

I don't know if all drugs need show A deficit to be useful.

A prominent me/cfs Neuro trying it for me for sound sensitivity. The rationale is other nmda antagonists like ketamine help with sound sensitivity, and sound senstivity is probably related to high glutamate in the brainstem.

However nothing impressive from this drug so far but nothing that bad either.

It probably helps with opioid tolerance as well, which is important for those of us with chronic pain

I'm of the opinion that glycine site nmda antagonists are more effective and safe than non glycine site nmda antagonists but we can't wait around until those make it to phase III trials (or in the case of xenon, until it becomes affordable somehow )

 

[frozenborderline]

And i have spent the last 11 years trying every possible supplement there is with ZERO benefits. I'm ready to take some chances before i see the rest of my life pass me by while i'm imprisoned in my bed.

I feel similarly. There are a couple supplements that have helped me but most of the things that have helped me are not nutritional supplements. Also it is relying on the naturalistic fallacy to say that prescription drugs are more unsafe necessarily than nutritional supplements . both can be unsafe and ineffective or safe and effective. One needs to take everything on a case by case basis. The worse memantine side effects to watch out for seem to be blood pressure spikes.

Its a fairly old drug by the standard of many of the things we take and so the side effects are known

 

[frozenborderline]

I had to look up namenda. Most people can't afford brand name and their insurance doesn't cover it, so they're stuck with taking a generic, which in this case looks like is memantine.

The generic is quite cheap.

While pill fillers can be problematic I'm not aware of brand name necessarily always being better. That may be the case with compounded versions, but most insurance doesn't cover those. Memantine is a very cheap, old drug that I doubt any insurance wouldn't cover.

 

[frozenborderline]

Well, Advil would not be on my list as a star drug without any risks.

https://www.medicalnewstoday.com/articles/ibuprofen-could-impact-liver-health

I happen to think Advil is not really worth the side effects , but that's because I'm an aspirin fan. However sometimes you do need otc painkillers that are strong and we must choose our poisons. Pain can kill too, by raising blood pressure or vausinf suicidality and most doctors don't prescribe adequate prescription pain meds

 

[frozenborderline]

And i have spent the last 11 years trying every possible supplement there is with ZERO benefits. I'm ready to take some chances before i see the rest of my life pass me by while i'm imprisoned in my bed.

While I have benefited from some supplements and third party sites that help to test them , and ensure quality , it should be noted that supplements have less oversight for safety and purity than pharmaceutical drugs in the US. They can be totally mislabeled , contain toxins , or just be unsafe even if they are what they say they are. I don't see drugs as fundamentally different from herbs or supplements. They're all just chemicals that one outs in ones body, that can be medicinal under the right circumstances or poison

 

[frozenborderline]

Apparently memantine is only supposed to work for severe Alzheimer's patients. What sort of a doctor prescribe this for you, with what rationale? And what labs did you have that showed that you had a memantine deficiency

As far as I know there are no drugs or supplements approved by FDA to treat cfs. However , off label uses are utilized by most me/cfs specialists , and the off label used for memantine could include sound sensitivity, neuropathic pain. Or cognitive dysfunction