Much worse after short course of Equilibrant

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Has anyone had an experience like mine after trying Equilibrant?

At the beginning of April I started on Eq after two years of moderate symptoms. I began with one pill, and didn't notice any particular side effects. After a week I increased to two per day and started to notice low-grade fevers and a sore throat. When I went to three per day a week later, I experienced very bad flu-like symptoms and intense fatigue. I dropped to two pills per day, but the symptoms barely abated. When I dropped to one, the symptoms were a little lower but still hard to bear, so I went off Eq altogether after five weeks. I expected to improve fairly quickly but only experienced a modest improvement after a couple of days. Five weeks after coming off Eq I'm around 30% worse than before I started. My crash threshold is much lower and I am having to rest two to three hours more per day than before I took Eq. I've also tried inosine because I heard this can help with the unpleasant effects of Eq, but that also noticeably increased my symptoms. I'm very worried that trying Eq has made me permanently worse.

@Hip - I've noticed that you're very knowledgable about all things Dr Chia – do you know if what I've experienced is common/what, if anything, I can do?
 

Hip

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I began with one pill, and didn't notice any particular side effects. After a week I increased to two per day and started to notice low-grade fevers and a sore throat. When I went to three per day a week later, I experienced very bad flu-like symptoms and intense fatigue. I dropped to two pills per day, but the symptoms barely abated. When I dropped to one, the symptoms were a little lower but still hard to bear, so I went off Eq altogether after five weeks.
Dr Chia finds that those who improve on oxymatrine sometimes get worse before they get better. It seems for some you have to go through the storm before you get to the calm of better health on the other side.

Getting worse means ME/CFS symptoms like fatigue, myalgia and headache intensify, and flu-like symptoms and fever symptoms may appear after around a month or so on oxymatrine.

My understanding is that typically, when the fever symptoms kick in (which is normally after a month or two on oxymatrine), it often then just takes 4 or 5 days before the fever clears up, and that's when you will have passed through the storm, and should hopefully be feeling much better. The fever period is probably when the oxymatrine is working hardest to clear viruses from your body.

Dr Chia found that if you are a responder to oxymatrine, you may need go through the storm to get to the calm of better health on the other side. And after passing through the storm, Dr Chia found that you may have to keep taking the oxymatrine in order to maintain your gains. If you stop taking oxymatrine at that point, then your ME/CFS symptoms may return. That has been Dr Chia's experience.

However, if you did stop taking it and got worse again, in most cases (but not all), Dr Chia found that starting a second course of oxymatrine again led to an improvement in symptoms. But in some cases, you don't get a second chance (ie, the oxymatrine does not work the second time).

If you are a responder to oxymatrine, just how long you should keep taking I do not know, but I would guess at least 2 years. You'd have to make an appointment with Dr Chia to find out more about this.



With enterovirus treatments such as oxymatrine, you may have fought off most of the virus and your ME/CFS may have much improved or gone into remission. But the virus may not be fully eliminated, and may still exist in small pockets of your body. So when you stop the treatment, the enterovirus infection can grow back again from those small pockets.

Dr Chia found this even with his interferon treatments for enterovirus: lots of his ME/CFS patients responded well to interferon, and went into full remission from ME/CFS, along with a drop in their viral titers. But then some months down the line, they all relapsed back into ME/CFS, and their viral titers went up again.

This indicates that even if you clear most of the enterovirus from the body, such that your ME/CFS symptoms have largely disappeared, the virus can claw its way back if you drop your guard, so to speak. Dropping your guard means stopping oxymatrine too early.

Note that Dr Chia says oxymatrine is not recommended for people with autoimmune tendencies or seizure disorders.



Incidentally, Dr Chia found that his Equilibrant formulation of oxymatrine (which contains other immunomodulatory herbs such as astragalus) has stronger effects that just regular oxymatrine. So given the strong reactions you have had to Equilibrant, you might be better off taking pure oxymatrine.


Some Sources for Oxymatrine

Equilibrant oxymatrine tablets (Dr John Chia's brand) available at equilibranthealth

Alternative Medicine Solutions oxymatrine (300 mg oxymatrine per capsule) available here:
alternativemedicinesolutionbetterlifealchemistlaborganicpharmacyamazon

White Tiger brand oxymatrine (200 mg oxymatrine per tablet) available here:
chineseherbsacuatlantanaturalnutritionalsgoldenneedleonlinemaxnaturebiomedonline (Netherlands)

Note that Dr Chia says oxymatrine is not recommended for people with autoimmune tendencies or seizure disorders.



I did not respond to oxymatrine, but I have tried both the White Tiger brand and the Alternative Medicine Solutions oxymatrine capsules. I found the latter was much better, because it pure oxymatrine, and does not cause dizziness side effects. The White Tiger brand contains both oxymatrine and matrine, and it is the matrine that causes dizziness. Matrine is also more toxic than oxymatrine, so may put more strain on the body.



For more info on oxymatrine, see: this post and this post.

See also these articles on Dr Chia's oxymatrine treatment:
Dr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM
Oxymatrine
Summary of 4th appointment with Dr. C


Dr Chia's patent on oxymatrine treatment: Patent US8198293 - Oxymatrine compositions and related methods for treating and preventing chronic infectious diseases. In this patent document, the section entitled "Oxymatrine Clinical Study" is worth a quick read. Some excerpts:
One hundred patients took oxymatrine at dose of 200-300 mg twice a day with or without food for a minimum of three months.
A small percentage ( 2/204) of patients had transient increase in potassium, which returned to normal without specific treatment. A small percentage of patients ( 2/204) had elevated blood pressure that prompted discontinuation of therapy.
Relapse of symptoms was common after discontinuing oxymatrine. Fifty-nine percent ( 19/32) of patients (4 male, 15 female) relapsed within two days to one month after discontinuation of oxymatrine. Eighty-seven percent ( 13/15) of patients who relapsed responded to restart of oxymatrine.
Most of the patients tolerated oxymatrine well except for variable increase of pre-existing symptoms, such as headache, myalgia, abdominal pain, nausea, insomnia and at times, fevers during the first 1-2 days of taking the maximal doses. The increase in symptoms typically lasted a few days to several weeks and was much better tolerated when the dose of medication was increased gradually over a 2-3 week period or longer.
 
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Hip

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I began with one pill, and didn't notice any particular side effects. After a week I increased to two per day and started to notice low-grade fevers and a sore throat. When I went to three per day a week later, I experienced very bad flu-like symptoms and intense fatigue. I dropped to two pills per day, but the symptoms barely abated. When I dropped to one, the symptoms were a little lower but still hard to bear, so I went off Eq altogether after five weeks.
I am not too sure what to suggest that you try for your second attempt at oxymatrine. Perhaps go more slowly in terms of increasing the dosage. You might say increase the dose level to the point where you are getting low-grade fevers and a sore throat (which you said occurred at two pills per day), and then stay at that dose level for say 3 or 4 weeks, before considering going higher.

That might give your immune system more time to clear viruses from your body, so that when you do go to a higher dose, you will have already made some inroads in terms of eliminating the virus.

But I am just guessing.

Perhaps @halcyon has some suggestions?
 

Theodore

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Dr Chia found that if you are a responder to oxymatrine, you may need go through the storm to get to the calm of better health on the other side. And after passing through the storm, Dr Chia found that you may have to keep taking the oxymatrine in order to maintain your gains. If you stop taking oxymatrine at that point, then your ME/CFS symptoms may return. That has been Dr Chia's experience.
According to a interview with him and made by MECFS Alert, men don't need to continue taking Oxymatrine once "cured".
 

Hip

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According to a interview with him and made by MECFS Alert, men don't need to continue taking Oxymatrine once "cured".
Very interesting, @Theodore.

The 2013 MECFS Alert video in question is this one, where at timecode 5:42 it says:
Llewellyn King: Men tend to be able to cope, and even to have substantial remission, better than women, would that be an accurate observation?

Dr Chia: Absolutely, and also the chances of relapse are much higher in women after they take the Chinese herbal stimulant [oxymatrine]. The response rate overall is about 50%; we have given it to over 800 patients.

Absolutely, some men come in really tired, functioning about 50% percent of normal, having a sorts of symptoms, after 3 to 6 months, they do not have to take it [oxymatrine] anymore. They are done.

The women usually have to continue it, because when they stop, they usually go into relapse, within the next month.
 
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I had a similar, yet worse experience. I think taking treatments like this can be risky, as I learned the hard way.

I started off with 1 pill for 2 weeks, with more fatigue as a result. I tried to ride it out. I went up to 2 pills, then 3, and I got far worse. Then I backed down to 2 for a while. I stayed on this course for 6 months, heeding the advice about "you may get worse before you get better." I even had a correspondence with Dr. Chia, who suggested I go even further by coupling EQ with another drug. But I stopped there.

All in all, I got worse after taking EQ, like you, perhaps by 25% or so, and I NEVER recovered to where I was before I took it (it's been a few years). Now it's hard to say if the EQ caused this decline, but we need to be extremely cautious when it comes to treating ourselves with risky courses of action. I'm not saying it isn't a potentially successful treatment, but I want to warn you and others that you can get worse.

I kept telling myself, against my better judgement, that I needed to ride it out. That may be good advice for some, but it may also be very bad advice for others. Be cautious and listen to your body.
 

Hip

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What was your personal experience with Oxymatrine?
When I first tried White Tiger oxymatrine several years ago (at a time when my ME/CFS was bordering on severe), oxymatrine quickly induced pretty significant depression in me, and so I was unable to take it for more than a few days (at that time, not just oxymatrine, but also other immunomodulators like inosine also rapidly caused depression — I speculate it might be due to inducing an interferon response, since interferon treatment is known to cause significant depression).

In more recent years, my ME/CFS has improved, and now I find that fortunately the depression side effect of oxymatrine and other immunomodulators is much less (but oxymatrine still causes some mild depression, and increased ME/CFS emotional sensitivity).

So I have been able to take up to 6 x 300 mg capsules a day of the Alternative Medicine Solutions oxymatrine for around 10 weeks; I felt a little more tired than usual, and with mild depression, but the depression was manageable. However, I did not notice any improvement in ME/CFS symptoms; but neither did I notice any worsening of ME/CFS symptoms, nor any fever or flu-like symptoms.

So I can't seem to get oxymatrine to work for me.



Another point of interest: earlier in the video at timecode 5:03 Dr Chia says that his son Andrew started on 6 pill of oxymatrine a day, and after two weeks he noticed no improvements, so went up to 9 pills a day. Six weeks later, he was fit enough to joint the gym.

That's interesting, because I only went up to 6 x 300 mg of oxymatrine. Perhaps I should have gone higher.
 
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Hip

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All in all, I got worse after taking EQ, like you, perhaps by 25% or so, and I NEVER recovered to where I was before I took it (it's been a few years).
How long had you had ME/CFS when you first started oxymatrine? I have had ME/CFS for a decade, and my disease has stabilized now, but for the first 5 years, I got worse and worse as each year went by.

So if you are taking a treatment like oxymatrine during a period in which you are declining anyway, it may be hard to determine whether the decline was due to the treatment, or was just happening anyway.


Dr Chia says that if the patient becomes too active too fast after experiencing improvements from Equilibrant, this can lead to a permanent decline.
 
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halcyon

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Perhaps @halcyon has some suggestions?
I had a pretty rough time getting started on Equilibrant too. It definitely made me much more sick at first, but I was determined to make it work. I started off with 1/4 of one pill per day which was way too much. I kept trying with 1/8th and even 1/16th of a pill but it was still too much. I eventually decided to crush the pills into powder and measure out milligram dose increments, starting with 10mg. I did this for several months and it was tolerable but just barely.

I even had a correspondence with Dr. Chia, who suggested I go even further by coupling EQ with another drug.
This is what ended up working for me, after being on these small amounts for several months I finally was able to see Dr. Chia and he put me on lamivudine. As soon as I started this drug I was suddenly able to tolerate way more Equilibrant and quickly increased the dose over several months until I was up to the full 6 pills a day dose. I've since gone beyond that and currently take 8 pills per day, if I take any less symptoms start to recur.
 

Hip

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This is what ended up working for me, after being on these small amounts for several months I finally was able to see Dr. Chia and he put me on lamivudine. As soon as I started this drug I was suddenly able to tolerate way more Equilibrant and quickly increased the dose over several months until I was up to the full 6 pills a day dose. I've since gone beyond that and currently take 8 pills per day, if I take any less symptoms start to recur.
That's quite remarkable that lamivudine (Epivir) could make oxymatrine so much more tolerable. I wonder why.


@halcyon, in terms of the benefits derived from oxymatrine, would you say that you get useful positive effects, rather than a major improvement?

Dr Chia says that roughly 25% of his patients get major improvements from oxymatrine, 25% get positive effects, and the remaining 50% do not experience any benefits.
 

halcyon

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@halcyon, in terms of the benefits derived from oxymatrine, would you say that you get useful positive effects, rather than a major improvement?
Depends on how you want to look at it. On the whole I'm disappointed, but when I think back to how I sick I was before starting treatment I've come a long way. Nothing has been able to make a dent in the inability to tolerate exertion or the POTS and other neuro symptoms. What it has done is get rid of a lot of the ancillary symptoms that making living with ME that much more miserable. So I would say I have had improvement but not in all areas, especially in the areas that would allow me to do more.
 

Hip

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Five weeks after coming off Eq I'm around 30% worse than before I started. My crash threshold is much lower and I am having to rest two to three hours more per day than before I took Eq. I've also tried inosine because I heard this can help with the unpleasant effects of Eq, but that also noticeably increased my symptoms. I'm very worried that trying Eq has made me permanently worse.

@Hip - I've noticed that you're very knowledgable about all things Dr Chia – do you know if what I've experienced is common/what, if anything, I can do?
It just occurred to me, @alex1989, after re-reading your post, that you are probably not interested in trying oxymatrine again, but rather are asking what might be done to undo the ill effects that oxymatrine seems to have caused. I initially thought you might be asking about how to optimize your oxymatrine protocol.

There's nothing specific I can think of that might undo the effects of oxymatrine (though hopefully you might get better in a few more months), but if you have not already, you might consider trying some of the other standard ME/CFS treatments used by ME/CFS doctors, such as vitamin B12 injections or high dose sublingual tablets.

Or some of the supplements that help some ME/CFS patients, such as: acetyl-L-carnitine, co-enzyme Q10, malic acid, D-ribose, probiotics and prebiotics.

These might help pull you back up to a better state of health.

I got good results from high dose selenium, so that's something you might consider as well.

There is also low-dose naltrexone (LDN), but since this is immunomodulatory, and since you have reacted badly to immunomodulators like oxymatrine and inosine, you may want to think twice before trying it. Note that LDN may not work unless you also take vitamin D3.
 
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Thanks for the replies guys. I don't think I can face another round of Eq, so I guess I will just have to keep resting and keep my fingers crossed that this is temporary (I've tried all of the supplements you suggest Hip, with some benefit from a few of them). Am (a little perversely) glad that I'm not the only one who has experienced this. Will definitely be a lot more careful in the future.
 
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How long had you had ME/CFS when you first started oxymatrine? I have had ME/CFS for a decade, and my disease has stabilized now, but for the first 5 years, I got worse and worse as each year went by.

So if you are taking a treatment like oxymatrine during a period in which you are declining anyway, it may be hard to determine whether the decline was due to the treatment, or was just happening anyway.


Dr Chia says that if the patient becomes too active too fast after experiencing improvements from Equilibrant, this can lead to a permanent decline.
I had CFS for probably a decade before I tried this particular treatment. Again, could be coincidence to some extent, but I got worse after taking EQ. I did not ramp up my activity since I never felt better on the treatment; if anything, I was less active because of the increased fatigue.

I might have been a candidate for coupling EQ with other drugs, but that seemed even riskier to try that on my own without being under the direct supervision of Dr. Chia. I guess that's what I'm trying to say - attempting treatments without supervision by a knowledgeable physician is risky.
 

Hip

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I guess that's what I'm trying to say - attempting treatments without supervision by a knowledgeable physician is risky.
There is a natural safeguard with most ME/CFS treatments, which is that if they start making you feel worse, patients tend to quickly stop taking them.

But in the case of treatments such as oxymatrine, which often make you feel worse before you feel better, it is expected that you need to persevere through the worsening of symptoms, and I think this sort of treatment is at higher risk of leading to ill effects or harm.


I recently started experimenting with an immunomodulator called androstenediol (AET). However, I found AET gave me more fatigue, brain fog and depression, and so I thought it best to stop taking it. But I am not sure whether AET may be one of those treatments that requires perseverance through worsening symptoms before the benefits appear.
 
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