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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Completely eliminated my severe anxiety symptoms with three supplements!

Hip

Senior Member
Messages
17,874
@Hip I remember from your post that carbonoxolone (sp?) helped remove glutamate from the brain. I couldn't find a good source though have you?

I have not found a source, but there are many ways to deal with high glutamate, from lowering brain inflammation and the attendant microglial activation that generates glutamate, to blocking the NMDA receptors that respond to glutamate, to boosting the glutamate transporters that pump out glutamate from the extracellular spaces of in the brain. See this post and this post for info.
 

eljefe19

Senior Member
Messages
483
I am currently using a lot of the same things you have found helpful for anxiety and they appear to help. I've been told by my doctor specifically that I have an inflammatory disease and microglia are heavily involved. The only component I'm missing is a way to clear the Glutamate. I take Memantine to block NMDA, also Epsom salt baths . I also take small doses of Lexapro, Clomipramine, and Etizolam for anxiety. Plus your protocol. Without etizolam though there is still real sense of impending doom. Recently I've felt better than in a long time, but I'm doing so much supplementation that it's tough to say exactly why. Fatigue, brain fog, and anxiety are the remaining symptoms. High dose Oxymatrine and other th2 to th1 shifters seems to have had quite a positive effect on my perpetual state of sickness. Again, your posts were highly influential in my decisions to pursue these options seriously.
 

Hip

Senior Member
Messages
17,874
@Hip and oh, is it safe to take amoxicillin long term? Won't it wreak havoc on the microbiome?

Yes, that would be a concern, although it might be mitigated to a degree if you also supplemented with high dose probiotics at the same time (and certainly I always think it is a good idea to take probiotics for a few weeks at the end of a course of antibiotics).

In actual fact, the lowering of my anxiety levels that I observed from taking amoxicillin at the maximum dose of 2 grams three times a day was no better than the anti-anxiety benefits of N-acetyl-glucosamine (although of course all these things are additive, so NAG + amoxicillin has higher anti-anxiety effects than either alone).
 

eljefe19

Senior Member
Messages
483
Exactly. The additive properties are real and are probably more efficacious as the result of being a more comprehensive supplement regimen. I'm probably going to try and avoid antibiotics with all my gut issues but I will look into some of the other options you listed, thanks hip
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
@Hip and oh, is it safe to take amoxicillin long term? Won't it wreak havoc on the microbiome?

I was on Amoxicillin back in March and it caused antibiotic associated diarrhea which resulted in my CFS/ME going from mild to moderate/severe. Seven months later I am still trying to recover. It actually caused anxiety for me which took almost five months to go away. Now in hind-sight I feel fairly certain that it was the Penicillin class of antibiotics that caused my CFS/ME in the first place 26 years ago.
 

eljefe19

Senior Member
Messages
483
@Hip got my Spirulina bro. Trialing 6-9 g a day. The protein and vitamins are of added benefit, as I'm skinny as hell and my diet isn't great. We'll see if I can discern any benefit. Your anti lactic acid stack seems to help with PEM, as I was able to drive four hours out into the desert on an adventure with my wife. Seems to help with mental PEM as well.

I am really interested now in killing whatever enteroviruses are still present. My tests showed CVA but not CVB, but I do have confirmed EV7. Your post has been a great resource to find the few agents that attack EV7, one that I take is high dose Inosine, and one being Serum Albumin. Is this supplement-able? I appreciate the updating nature of that post, I check back every so often and update my supplementation as needed. Cheers mate.
 
Messages
35
All the 29 anti-anxiety supplements in my list I have tried individually and in combination.
You seem to have a mind that is inclined to think and act scientifically. I admire this and I would love if you could share the system that you use to differentiate and test supplement effects. This would be of use to everyone, ill or well.
 

Hip

Senior Member
Messages
17,874
I would love if you could share the system that you use to differentiate and test supplement effects.

Firstly, for testing supplements and drugs, I find it absolutely invaluable to keep an ongoing diary (daily journal) on my computer in which I write down every drug or supplement I take on each day. In this diary, I also write my observations regarding any interesting changes in ME/CFS symptoms (symptoms improving or worsening, or new symptoms appearing). My diary system is explained in this post.

Secondly, an important part of my testing system is planned starting and stopping of the medication or regimen under test. This is because I find you only really notice the benefits of a medication when you first start it (because that's when the benefits first appear, and you notice the change), and when you stop taking it (because that's when the improvements will tend to vanish again, and you notice the change). See this post for more details.

The third part of my testing system is finding and making use of natural objective measures of health level: this means finding reliable objective measures of your symptom levels (what you are capable of doing today), rather than your subjective assessment of your symptoms (how you feel today). This idea is explained in this post and this post.

I hope that helps.
 
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eljefe19

Senior Member
Messages
483
@Hip I can't remember what thread it was in but you linked to a list of drugs that a Dr Goldstein, I believe, used for CFS. I read through it and he says that Ketamine is his favorite drug for CFS, he also really liked H2 histamine antagonists like Ranitidine. However, he says he really likes Clonidine which made my fatigue significantly worse so I am not sure whether I follow his logic at all. What do you make of that? I'm interested in histamine for its relation to IBS-D.
 
Messages
1
Further to my comments above.

I constantly had bad tonsillitis as a child and had a tonsillectomy at 18yrs.

I had a Septoplasty around the same time, primarily because i broke my nose badly at 6yrs old. But also due to bad nasal canal and polyps. It did nothing really and a couple of years ago an 'ear nose throat' specialist told me i only had around 20% of normal nasal size/capacity. Suggested i do another Septoplasty but as you can imagine i wasn't keen. I went on Beconase for almost a year, it helped a little but i developed this horrible dry throat pain which would occasionally take my voice away. I found some information that the steroid drips onto the back of the throat and causes/prevents an infection from healing making an ever worsening sore. Plus i pretty much lost all taste!

As a child i suffered from asthma.

After considering this new found knowledge today I can now make connections i hadn't before. A few years back i caught a particularly aggressive strain of influeza which took hold in under 24hrs, i was travelling at the time and was quarantined in Singapore, before boarding the plane i felt a little ill, nothing bad. 8hrs later on arrival in Singapore I was delirious, could barely breath and couldn't walk. Details aren't important except that it took some time to recover and my anxiety became severe again over the next couple of months. In fact when i look back, everytime i have had severe bouts or increases in anxiety (despite a stable dose of Benzos) it has been preceeded by some kind of illness! How have i never made this connection!?

Moving on from my list of ailments, i think that is enough for now...

POTS seems worth investigating and i will certainly do the test, however that particular feeling i describe is exactly like low blood sugar in a diabetic, although my blood sugar is not low (nor is my fathers). Yet if i eat a couple of jelly beans, as a diabetic might, i very quickly recover from the symptoms. It is a quite noticable physical feeling of recovery. This state also gives me mood swings and often without realizing myself (if i am preoccupied or something), my wife will comment that i am grumpy and feed me something. She too can see the very quick return to normal and my mood stabilizing. I can't see any connection with POTS to food in this way. Am i missing something?

I also commented on combining NAG and Dexamphetamines. I was mistaken sorry, i believe it is NAC which acts similarly on dopermine receptors and often causes unpleasant effects to people on Dexamphetamines.

Thanks again.


Hi CapQ -

I just happened to jump on this thread for other reasons and noticed your symptoms. I've recently been diagnosed with Mastocytic Enterocolitis after having my colonoscopy/endoscopy biopsy results stained at the lab.

I've had anxiety all my life (GAD and panic) and sometimes depression. That, plus gut symptoms got much worse over the last year and a half. Including some instances like yours with feeling like low blood sugar, etc. Turns out my mast cells are overproducing (and when I think back, probably have been most of my life).

Anyway, long story short, I"ve been put on H1 and H2 blockers which helped some of my symptoms but not the nausea and anxiety. Sodium Cromolyn (Nalcrom in Canada) seems to be helping with that!! It's early days for me, but something actually seems to be working after a lifetime of looking.

You should think about having your mast cells tested for either Enterocolitis, Systemic Mastocytosis (I see a hematologist this week to see about a bone marrow biopsy to rule that out), or MCAD. And POTS is often diagnosed with mast cell disorders, too.

Just trying to get the word out that mast cells may be at the root of many anxiety cases. Good Luck! Lisa
 
Messages
35
Firstly, for testing supplements and drugs, I find it absolutely invaluable to keep an ongoing diary (daily journal) on my computer in which I write down every drug or supplement I take on each day. In this diary, I also write my observations regarding any interesting changes in ME/CFS symptoms (symptoms improving or worsening, or new symptoms appearing). My diary system is explained in this post.

Secondly, an important part of my testing system is planned starting and stopping of the medication or regimen under test. This is because I find you only really notice the benefits of a medication when you first start it (because that's when the benefits first appear, and you notice the change), and when you stop taking it (because that's when the improvements will tend to vanish again, and you notice the change). See this post for more details.

The third part of my testing system is finding and making use of natural objective measures of health level: this means finding reliable objective measures of your symptom levels (what you are capable of doing today), rather than your subjective assessment of your symptoms (how you feel today). This idea is explained in this post and this post.

I hope that helps.
Thanks a lot, I think this is quite actionable advice. I really like that you advocate objective measures so that people don't start and stop medication randomly because they "feel bad" whereas in reality they might actually be doing a lot better than they were before but simply having a bad day.
 

Hip

Senior Member
Messages
17,874
I really like that you advocate objective measures so that people don't start and stop medication randomly because they "feel bad" whereas in reality they might actually be doing a lot better than they were before but simply having a bad day.

That's not actual reason why I think objective measures are more accurate than subjective measures: how you feel is a very useful measure, but usually people cannot rate how they feel on an absolute scale. I know if I feel better or worse than yesterday, but I cannot really compare how I feel today compared to how I was feeling say 3 months ago. We don't tend to remember this.