Advice on Equilibrant?

[EMilo]

I've had Equilibrant in my cupboard for over 7 months and I might have finally gotten up the nerve to try it. I'm highly reactive to most meds and supplements. Any advice on taking it? How much? What time of day? Any contraindications? Anything I should expect? Thank you!!

 

[halcyon]

Start small. Like really small. I started with 1/4 of a pill and it made me really sick. I kept titrating downwards, down to 1/32 and it was still too much. I then broke out my milligram scale and crushed the pill into powder and started at 10mg, then started working my way up 5mg at a time every week or so. Everybody probably reacts differently to it, but if you're like me you'll want to start low. Take it with food. I started out taking it in the morning, but then I switched to taking it at night. It was a bit more pleasant to sleep through the effects of it and it didn't seem to hurt my sleep quality.

In terms of what to expect, possibly fever, possibly a temporary increase in some of your symptoms. Possibly a temporary increase of GI symptoms. Possibly headaches. If you get obvious flu-like symptoms then the dose is too high and you should drop it down.

I was taking Equilibrant like this for a number of months before I finally saw Dr. Chia. He got me on Epivir and inosine and advised me to try increasing the Equilibrant dose to two or three times a day. The odd thing is that as soon as I added in inosine, I was suddenly way more tolerant of Equilibrant. In a matter of days I've been able to up my dose to 1/4 pill, three times a day.

 

[EMilo]

@halcyon Thanks for the great advice. I know I need to start on a tiny dose, like you describe, I'm just so incredibly impatient. I saw Dr. Chia last August. He gave me nothing but Equilibrant and advised IVIG, which I'm too reactive to get. I wish he had suggested Epivir and Inosine. I've gone downhill since seeing him and can't imagine being able to make the flight again (I'm in Seattle).

Do you think you are getting any benefits from Equilibrant? Or are you hoping they will come as the dose increases?

Thanks for the reply!

 

[halcyon]

If you have low immunoglobulin I could see why he'd advise IVIG. Antibodies are crucial for clearing enterovirus infections. That's a huge bummer that you can't take it.

Did he specifically advise against Epivir and/or inosine, or did he just not say anything about it? He should be open to doing a phone follow up if you've already seen him in person, given that you live so far away.

I did get some benefit from Equilibrant alone. It helped knock down the constant fevers, improved GI symptoms and digestion, and very slightly increased my PEM threshold and recovery time. It's clearly not enough, especially at such small amounts, although it's meant to be taken for a long time so I have a while to go before knowing where the improvements will stop I think. It definitely seems to be more powerful in combination with other therapies.

 

[Lillybelle]

@halcyon did you have enterovirus test prior to taking the Equilibrant? If so what type of test would I ask for can my GP do it? None of the specialists I know here in Aus would do any enterovirus tests.
What does the Inosine do?

 

[halcyon]

@halcyon did you have enterovirus test prior to taking the Equilibrant? If so what type of test would I ask for can my GP do it? None of the specialists I know here in Aus would do any enterovirus tests.
What does the Inosine do?

Yes, I had a stomach biopsy tested at Dr. Chia's lab that came back positive. The best blood test for chronic infections is the microneutralization assay. There is only one commercial lab in the US that does this test. I have no idea if any labs in Australia offer this.

Inosine is an immune stimulant though Dr. Chia also believes it may have some direct anti-viral effects against enteroviruses.

 

[SOC]

I was advised to try Equilibrant after testing positive for Coxsackie B, but was never advised to take more than 2 pills daily. My coxsackie titres dropped into normal range within 6 months. I don't know if antibody titres are a particularly good measure of treatment since they hang around a while after infection, but I did feel better.

Equilibrant also unexpectedly cleared up my chronic bronchitis. When I went off the Equilibrant, the bronchitis came back, so now I (often) take only one Equilibrant daily which seems to do the trick. I usually go off in the summer and pick it up again when the bronchitis starts up again in the fall.

Neither my daughter nor I have had any trouble with Equilibrant, but we've never taken anything like the standard dose. One or two pills seems to be enough for us. We are not particularly sensitive to medications, though, so our experience may not translate to others.

I wonder if the side effects from Equilibrant are related to whether the patient is more autoimmune or more immune deficient (understanding that that is not a black/white situation and one could possibly be both in different ways/degrees). My family appears to be more immune deficient than autoimmune, so perhaps Equilibrant helps us where it might over-rev someone with autoimmunity problems...?

Inosine is said to improve NK cell function. It certainly worked that way for my daughter, taking her NK cell function from quite low to high normal. Unfortunately, she still has a small number of NK cells. She likes to joke that she's got few enough to give them all names, but they're hard-working little guys.

 

[halcyon]

I don't know if antibody titres are a particularly good measure of treatment since they hang around a while after infection, but I did feel better.

Dr. Chia's small treatment studies seem to show that antibody titers are a decent measure. They drop during symptomatic improvement and rebound during relapse. It's not conclusive proof but an interesting correlation. Dr. Richardson seemed to have a similar experience with his patients.

I wonder if the side effects from Equilibrant are related to whether the patient is more autoimmune or more immune deficient (understanding that that is not a black/white situation and one could possibly be both in different ways/degrees). My family appears to be more immune deficient than autoimmune, so perhaps Equilibrant helps us where it might over-rev someone with autoimmunity problems...?

I think it's theoretically possible that Equilibrant could worsen autoimmunity. I personally believe the side effects are relative to viral load. I had a severe reaction to small doses of Equilibrant, but I have no signs of autoimmunity (negative ANA, no thyroid antibodies, etc.). As I mentioned above I started to tolerate Equilibrant much better and attributed it to inosine, but I actually think it was due to Epivir. I've since dropped inosine and am now taking 5 pills of Equilibrant a day with Epivir.

 

[SOC]

I think it's theoretically possible that Equilibrant could worsen autoimmunity. I personally believe the side effects are relative to viral load. I had a severe reaction to small doses of Equilibrant, but I have no signs of autoimmunity (negative ANA, no thyroid antibodies, etc.).

That theory would also fit with our experience. Neither of us had extremely high coxsackie titres, so we may not have had high viral loads and were consequently less subject to serious side effects.

I have heard that Dr Chia does not advise (or advises against) Equilibrant in people with certain clear signs of autoimmunity, so he may have reason to think autoimmunity can be aggravated by Equilibrant. However, I don't know how the symptoms might be different if the problems were due to autoimmunity as opposed to high viral load.

So many questions, so few answers.

 

[halcyon]

She likes to joke that she's got few enough to give them all names, but they're hard-working little guys.

Missed that before.

Does your daughter have the same immunoglobulin problems you have or no?

 

[SOC]

Missed that before.

IIRC, there's Harry, George, and Frank, but I don't remember the others. Generally, I just ask how Harry, George, and Frank are doing and figure the rest of the guys are similar.

It has been a huge emotional benefit to have another patient in the house to make jokes about the insane world PWME live in. We were even able to laugh one night when we were both lying on the bathroom floor, too sick to crawl to bed -- her from vomiting from a migraine and low BP, and me from passing out from leaping out of bed too fast to go help her. A real mother-daughter bonding experience. It's often a matter of laugh or cry and it's easier to laugh when there's someone else to help you see the (dark) humor in the situation. I'm going to miss that now that she's married and moved far away.

Does your daughter have the same immunoglobulin problems you have or no?

No, she doesn't, thank goodness. We're keeping our fingers crossed that she doesn't develop them. Interestingly, although our infections are the same, our immune pictures are different. She has had both low NK cell function and number, while mine tend to be normal or slightly high. I have very low CD8+ cell numbers, while hers are normal. We both have significant cytokine abnormalities, but they are not much alike. At some point I'm going to go through all our cytokine tests over several years and see if I can find any commonalities, but superficially they're not the same.

I find this interesting because we came down with the same extremely sudden onset illness at the same time (well, about a week apart IIRC), and have a similar pattern of symptoms. She went mostly into remission except for several PEM episodes a year until she got a live virus chicken pox vaccine, which knocked her into continuous illness. I never got better from the initial illness and went into a slow decline over 5-6 years. So for us, at least, even with many similarities in our illness, there are also significant differences.

 

[jlynx]

I've just started taking Equilibrant and Inosine 10 days ago. I'm hoping they help to lower my Parvovirus levels. I haven't had any noticeable side effects so far.

 

[Lillybelle]

@halcyon @SOC thanks for your input. No such thing as Cytokine testing over here, or not that is available for patients. I know NKC tests are available but told by the doctors here doesnt really help the situation to know this. And most ME/CFS patients have this low NKC function.

I would like to try Dr. Chia's Equilibrant. Why not. Ive had this illness four years and their is no treatment other than CBT/GET prescribed by the medical profession in this country (Australia) as yet. So I have no hope of getting any guidance here on taking it.

There is however promising research being conducted in Queensland at NCNED - however I don't think its looking at entoriviruses more at T1 T2 dysregulation and immune dysregulation.
I have heard other prominent GP's speak who specialise in treating ME and Lyme discuss enteroviral as being one of the causes of ME/CFS.

So the question is dosage? How many should I take?
How long should I trial it?
Should I take Inosine with it?

Ideally I would love to be a patient of Dr. Chia but this is not practical given the distance I'm in Melbourne he is in California. Any advice on whether he may consult via Skype would be helpful too?
Thanks

 

[halcyon]

So the question is dosage? How many should I take?

I believe Dr. Chia advises starting with 1/2 to 1 pill a day. I was scared of it and started with 1/4 of a pill which even turned out to be too much for me at first.

How long should I trial it?

I'd say at least 3-6 months would be a fair trial. It's suggested on the box that it should be taken for at least a year.

Should I take Inosine with it?

I wouldn't start both at the exact same time, but once you get adjusted to the Equilibrant it may be worth adding in. I was on inosine for about 3 months and then Dr. Chia had me stop it. He said the combination can cause too much immune stimulation sometimes.

Any advice on whether he may consult via Skype would be helpful too?

Unfortunately I don't believe he does this.

 

[Lillybelle]

@halcyon thankyou very much for your helpful info.
Are you feeling better at all? If so by how much what symptoms have improved for you?
How long have you been on it?
Will you have another test at the end of the year to see of the EV has gone?
Thanks

 

[halcyon]

Are you feeling better at all? If so by how much what symptoms have improved for you?

I have had some improvement in some symptoms but I'm still mostly bedbound due to OI and trying to avoid PEM. The most rapid improvements (within the first few months) were a large reduction in the constant low grade fevers and also my GI symptoms improved greatly. After that I've had slow improvements in blood sugar control and water balance. I should note that I'm taking it alongside Epivir so I'm not sure how much credit to give to which treatment.

How long have you been on it?

Around 9 months total, though only on serious doses for about 5 months.

Will you have another test at the end of the year to see of the EV has gone?

Not sure. I had a test last month that showed my titer was basically unchanged so far.

 

[Gingergrrl]

Any advice on whether he may consult via Skype would be helpful too?

I know for sure he does not Skype for the first appt b/c I will be seeing him for a consult b/c I have already had testing which shows that I have two EV's. I want to see if he has any ideas that I have not tried that I can also tolerate. Unfortunately the soonest appt I could get is not until February!

 

[frederic83]

I tried oxymatrine with inosine, it helped my digestion a little, the next 2 days after I took it. It is quite stable for the digestion, but nothing exceptional. Now, I still take it, but I can see no benefices. I also added Epivir, I had no results. I added amantadine, but it created a lot of inflammation in my stomach. So now, I'm just on Oxymatrine and inosine.

PS: Oxymatrine is from Alternative Medicines Solutions, I can tolerate it. I tried Equilibrant and White Tiger, but the other compounds like Matrine I think, make me very tired. I have no real symptom with the AMS brand. But it works fine, I can take higher dose than juste half a pill, no miracle though.

 

[ebethc]

I wonder if the side effects from Equilibrant are related to whether the patient is more autoimmune or more immune deficient (understanding that that is not a black/white situation and one could possibly be both in different ways/degrees). My family appears to be more immune deficient than autoimmune, so perhaps Equilibrant helps us where it might over-rev someone with autoimmunity problems...?

Inosine is said to improve NK cell function. It certainly worked that way for my daughter, taking her NK cell function from quite low to high normal. Unfortunately, she still has a small number of NK cells. She likes to joke that she's got few enough to give them all names, but they're hard-working little guys.

@SOC or anyone else..

how do you know if you're more immune deficient? I have always thought that this was my core problem, but I don't know what the biomarkers/test are... I do have consistently low NK cells which may be the best way to test.

How do you improve NK function, besides Inosine?

 

[sandiegotraveller]

I believe Dr. Chia advises starting with 1/2 to 1 pill a day. I was scared of it and started with 1/4 of a pill which even turned out to be too much for me at first.


I'd say at least 3-6 months would be a fair trial. It's suggested on the box that it should be taken for at least a year.


I wouldn't start both at the exact same time, but once you get adjusted to the Equilibrant it may be worth adding in. I was on inosine for about 3 months and then Dr. Chia had me stop it. He said the combination can cause too much immune stimulation sometimes.


Unfortunately I don't believe he does this.

The initial consult has to be done in person but follow ups can be done over Skype