Oxymatrine: What to expect with fatigue and how long? (And my on-going journey, info and questions.)

Stretched

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...I'm mainly bedbound, alone with no help. I don't know if I can take it without finding some help if it makes me worst than I am. Everything to do with being able to survive day by day is stretched to a point that I don't know if it's possible to stretch it any further without causing more serious problems.:hug:
I bought and used Equilibrandt twice a few years back. CFS symptoms increased over ~2 months while taking it; I got sicker on it.

I later tried it again... . The only good feeling re ME symptoms was when I stopped taking it!

You do know Equilibrandt is a Chinese, off-label herbal concoction overseen by Dr. Chia and sold online? Oxymatrine is close but not the very same.

I personally wouldn’t try it again. I’m ~80% housebound, and a 30+ year PWC. I couldn’t in good conscience recommend it to someone in the same or worse condition, e.g. as you described. IMO, on a practical, not research level it’s a long shot vs the risk of making your life worse. ‘Remember the ‘metals’ scare which prompted some PWCs to get all their fillings replaced...?
 
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Jennifer J

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Hi, guys. Thank you @Hip and everyone who has shared information about oxymatrine and equilibrant. And @Hip for all your updates on your older threads. I can't thank you enough, it's been so helpful.

Sorry I've been off the forums except peaking in once in awhile. Haven't been well and been struggling for the basics of the basics.

On the brighter side, finally after 4 1/2 years of trying to make this happen, I started oxymatrine last week. Yay! I have soooo much hope in this yet am realistic about how these things may go.

I'm only taking 20 mg!

Dr. Chia wanted me to start at 50 mg due to my angioedema and sensitivities. I started 1/2 of that to test it out and be on the safer side since I'm struggling so much. Need to eventually work up to 600 mg if I can.

I'll try to tell more at another time about how this is going and goes.

Question, please if anyone knows or has an idea:

Having a problem staying in a deep sleep since I started oxymatrine . After I'd been asleep for a few hours, I then start skimming sleep in a light dream state for hours before I wake up for the day.

I'm taking oxymatrine after I eat my first meal of the day.

Curious does anyone know will this change as my body adjust to this? Not sure if it's the oxymatrine (which I off and on feel wired but tired on) my body healing and fighting the virus with oxymatrine, or adrenaline cause I'm excited about hopefully having some improvements in my health and life with this.

Thanks if you have any thoughts or knowledge of this.

I've been thinking of you all. Please take good care as you can.

@aaron_c and @Diwi9, Hi! I just saw your post before this one. Did your insomnia go away as treatment went on? Anything else you can tell me about the process of starting these things, why insomnia and how insomnia goes? Thanks. :)
 

aaron_c

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@Jennifer J Unfortunately I never figured out what was causing the insomnia or how to quash it, I had to stop the equilibrant because it was so bad with just a tiny dose. But please tag me if you figure out something that helps you, I'd be curious to hear!
 

Diwi9

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@Jennifer J - I have been off of Equilibrant for a few months now, but took it for about 1.5 years. I do not remember insomnia being triggered by it. I still have horrible insomnia that seems to cycle with hypersomnia. Zolpidem can help with my insomnia, but I don't like taking it (it's a benzo) as so my doctor is switching me to hydroxyzine (antihistamine) as it can help MCAS and target insomnia because it is sedating, but I'm still waiting on the script. A functional medicine doctor has set me up with liposomal melatonin and phosphatidylserine...I believe they are both OTC. FWIW - Benadryl isn't even a speed bump for me when insomnia sets in.
 

Jennifer J

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Hi @halcyon, @flitza, @Sancar, @Diwi9, @Jesse2233, @Frustrated , @Patrick*, @RestingInHim, @binky, @Timaca and anyone else who'd like to share.

I've read over this thread again and some other threads. Thank you again for sharing, it has helped me a lot being able to read what you wrote.

I have a couple of other questions (3) I was hoping you could share what you do and know with me especially since Dr. Chia's office can't see me as a follow up appointment, will need to see me like a new patient which won't be available til 2020 January.

I'm only now after 6 weeks on one dose of 100 mg of oxymatrine with my first meal of the day. I'm ready to start adding a second dose.

My 3 questions if you can answer any or all of them and thank you if you can :):

1) How many hours between your first and second dose each day? I want to do what is most beneficial yet concerned cause it is causing several hours of not sleeping well.

2) Your second dose can it be much lower than your first dose? Or do they need to be equal amounts?

Dr. Chia told me 3 yrs ago, to work up to 100 mg first dose, then add 100 mg second dose. I don't think I can make a 100 mg jump. 20 mg increases have been hard for me (it's like a very bad flu and feeling like I'm going to black out dizzy for days to a week). I'm not sure the best way to do this as far as how oxymatrine works with timing and amounts and what it's doing in the body.

3) What kind of blood work/what did Dr. Chia test for to make sure your body is ok with oxymatrine? (Other than him looking at your viral levels again.)

I've read several times, when taking this that one ought to be supervised by a doctor and have blood tests taken at 2 - 3 months after starting (?and every 3 months). Not sure what they are concerned about and looking for to make sure you are alright when doing immune modulator treatments.

Thank you so much if you can help me out with this. I really thought I could get in to see Dr. Chia sooner. So thankful for Dr. Chia and all the doctors, researchers and advocates that are trying to help us with this. And thankful for each of you! Here's to our continuing journeys and to better health.
 
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halcyon

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I always did mine 12 hours apart.

The pharmacodynamics of the compound are far above my head, though I get the impression it’s not super well studied so perhaps nobody really knows. I think as I was increasing the dosage over time I did take unequal amounts morning and night at times.

Beyond the initial appointment, he has only ever had me do CBC and chem panels to make sure liver and kidney function is ok.

To clarify, I’m taking Equilibrant, not oxymatrine by itself.
 

Jennifer J

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Sorry I couldn't put more words together the other night when I wrote thank you. Thank you @halcyon especially for the lab information. :) It's a relief to know that information. I was very concerned not knowing what that would be and having to wait over a year to see him. Now I can try to arrange the blood test through another doctor.

****
Anyone else can you share with me how many hours apart you do/did your first and second dose of equilibrant or oxymatrine? And was this the timing advised by Dr. Chia?

I'm going to aim for 12 hours yet not sure if I can pull that off since it's affecting my sleep and also with my bedbound abilities and needing to eat when taking it.

Also during titration was your second dose a lot lower than your first as you slowly worked your way up or did you make them the same amounts?

I won't be able to do an 100 mg jump for my second dose. 25 mg added is probably all I can tolerate.

So I'm not sure if my first dose should stay at 100 mg and second dose start with 25 mg? Or I ought to make both doses 62 mg?

Please excuse any redundancy from a previous post of mine here, brain is foggy.

Thank you so much for any help with this. Wishing us all better moments, days and health. :thumbsup:
 

flitza

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Hey Jennifer,
I take my first dose of Equilibrant with breakfast and the second about an hour after dinner. I probably still have enough in my stomach that the hour doesn't matter. That's about 12 hours.

When I first started I was told by Dr. Chia to increase slowly with once daily dosing. When I got to one tablet I started increasing very slowly by adding an evening dose. The evening dose was very small at first because I also was very sensitive to it. I increased by small increments every 2 weeks. That kept the side effects manageable. But I don't know if it would have made a difference to divide the first dose and add to the second...

Dr. Chia ordered chemistries that checked my liver function before my follow-up visit which I believe was 6 months later. But I'm no longer sure about when it was. Since then, I've increased again and had labs done elsewhere that were all ok.

Equilibrant really helped me. I hope you have equal success.
 

Jennifer J

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Thank you so much @flitza for sharing all that! :) Yay, it really helps to read it. I'm so happy equilibrant really helped you!! May I see the same and may others find this or something that will do the same for them too.
 
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Diwi9

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@Jennifer J - I can't remember, I think I took three doses per day. I was able to started with half a pill for each dose, but worked up to 1 pill quickly. I then titrated to 2 pills three times per day. I tried on multiple occasions to get up to 3 pills three times per day, but never could tolerate. Dr. Chia told me it was fine to stay at 2 pill three times per day.
 

Jennifer J

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Hi, Guys. Just a little update and information to share. Today is my 3 month anniversary since starting oxymatrine. Only on 100 mg first meal, 80 mg 12 hours later meal.

Still trying to work my way up. Haven't been able to as I'd like due to being mainly over 23 hours a day bedbound, with no help. Oxymatrines affects makes me much worst for about a week each time I up it .

Anyways, I don't think I've had any improvements. Hard to say cause things keep happening that require health I don't have so I'm crashed a lot.

Still hopeful though. I've read in several places that it may take longer than 3 months to see improvements, plus I'm still on not even 1/3 of the dose I want to work up to.


https://phoenixrising.me/archives/814

Prognosis - On the average, the patient should have some signs of improvement by 4-6 weeks, but few may take more than 3 month, especially if the dose is escalated over 4- 6 weeks period. Since the symptoms are often cyclical, a longer course may be needed to fully evaluate the benefit of the herb, as long as the patients are tolerating it well.
Here's a couple of the posts I've seen on the forum about it taking longer:

It took me around 16-17 weeks before I felt better. So you may want to hang in there longer than 3 months.....
Good luck.
Best, Timaca

Kati~ It took me about 17 weeks before I noticed a benefit to the oxymatrine. You may want to persevere a bit longer.

I really need to make something work quicker (if possible) or for this to work soon though. I'm in a lot of trouble here and more, another post I'll try to write another time.

Thank you everyone for your help with all of this and for cheering me on. I wish us all the best as we pursue things to help us. Thinking of you all. :heart: :hug:
 

Jennifer J

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Ohhhh, forgot to mention I may not be feeling improvements also due to I haven't slept well since starting Oxymatrine. I sleep about 4 hours and the next 4 hours is a constant 1/2 awake dreaming state.

I thought I'd go sleep deprived and hope it would improve. It's messing me up too much so now I'm going to try sleep aid suggestions.

First I'm going to try Atarax (hydroxyzine) due to I have chronic angioedema, so it can work for both. (Thank you for mentioning that @Diwi9 that it was something you were going to try for your sleep and allergies. I hope it helped you.)

Also forgot to mention, I can't keep weight on, on oxymatrine. It's revived up my system in that regard. No food suggestions please (I'm too limited and complicated in many ways with being able to have and to eat food). Just mentioning it for if it helps anyone to read that oxymatrine may burn calories (which depending can be a yippeee :thumbsup: or oh noooo :eek:!)
 

JES

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Regarding not putting weight on, it may relate to the other ingredients in Equilibrant (not sure which brand you are using). Equilibrant contains olive leaf extract, which is a strong anti-bacterial. Olive leaf messed up my digestion a bit and allowed some food to go through undigested. So if you are on Equilibrant, I bet it's the olive leaf that's causing this effect.

Even plain oxymatrine can have a bit different effects depending on the brand. The brand white tiger produced more side effects for me than the alternative medicine solutions brand, which is supposed to be more pure.
 

Jennifer J

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A functional medicine doctor has set me up with liposomal melatonin and phosphatidylserine...I believe they are both OTC.
Hi, @Diwi9. I was wondering if you tried the liposomal melatonin and the phosphatidylserine, and if they helped. Also how the Atarax (hydroxyzine) was for you?

I have an rx for 50 mg atarax. I think I'm allergic to it though. I'm only trying 6 mg to start and feel very slight lip and eye swelling.

At the 6 mg dose it didn't help me to not be in a continual dream state for hours during my sleep,
but did have me not able to get up at approx 8 hours of sleep. Now keep hitting snooze and get up 10 hours. Also feel much more out of it most of the day, more so than my normal waking up for hours to half a day ME/CFS life. No bueno (good).

So off to try other recommendations. No problem going to sleep, since starting oxymatrine it's this constant dream life for hours that is affecting me greatly.

@Diwi9, @aaron_c and anyone else, I read this, not sure if it's applicable for your sleep. Bolded part is my doing.

https://forums.phoenixrising.me/ind...leep-some-other-things-helping-as-well.62229/

And for those who are unaware, high cortisol at night can cause severe insomnia that I don't think anything will touch until cortisol levels are normalized. I had this many years ago and was given Seriphos (phosphorylated serine - NOT phosphatidyl serine which is not nearly as effective). The Seriphos worked great for normalizing my cortisol levels. I had to titrate up to find the correct dose, we're all different, and eventually I was able to pretty much cut it out.
I haven't, and probably can't, research any of this much. For now I think I'm going to start with magnesium and see how that goes. If it doesn't help perhaps try these: phosphorylated serine, melatonin, valerian and l-theanine.

Re magnesium: many of you know this already but calcium can contribute to excitotoxicity in the brain, so have cut out my calcium supplement, and doubled my magnesium glycinate. I take the magnesium at night in 2 doses, 400 mg. before bed and 400 more middle of the night. This has helped a fair amount too, but on its own was not enough. Now that the C is helping so much, I'm going to try adding back a small amount of calcium (in the morning only!) and see how I do.
Here's to all having a good nights :sleep:.

Nothing new to report with oxymatrine still slowly titrating up. Hard to say if there is any improvements due to how sleep deprived I am.

Still hopeful and going to start looking into what antivirals to add next to this. Need an improvement real soon. I'm in an asbestos deteriorating living situation I desperately have been trying change and to get out of for years. Presently going to lose a housing opportunity I've been waiting 10 years for due to I don't have the ability to act on it and I'm too reactive (angioedema - facial swelling...) to most places. I'm not a happy camper about this. :( Yet as always hope is not lost and keep trying and pushing on. Wishing good moments and better days for all.
 
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Diwi9

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@Jennifer J - I don't personally notice any difference between liposomal and regular melatonin. I have had the worst insomnia and reversed circadian rhythms the last few weeks. Nothing will break the cycle, I just have to wait for it to pass. That said, when I'm not struggling like this, phosphatidylserine and melatonin are helpful.

I could not tolerate hydroxyzine because it made me too groggy in the mornings. I have enough problems with that!

I know you are really struggling and hope you find some relief soon.