• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Equilibrant

Messages
59
Location
Pittsburgh, PA
I've been out-of-the-loop. My brother died suddenly July 19. My family and I are still absorbing the shock. Given my health issues, I am so grateful I was well enough to stay with my parents (who are 85 & 87) for 2 weeks and then plan a family memorial. After the memorial, I got immediately hit with diverticulitis...the 2nd bout in 3 months. Dr.Chia says it is caused by the enteroviruses.

I managed to see Dr.C in the midst for my 4th appointment. He told me to start inosine. I waited until the diverticulitis antibiotics were done. (I intend to ask him at my next appointment why antibiotics help if the cause is viral. If you have any insight on this I would appreciate it.) He told me to start with 1- 500mg inosine-a-day...and to expect being hit with exacerbated flu symptoms for 3-4 days which would be an indication that it was working. BOY! Did I get hit!! He said increased symptoms should subside and then I would feel better. II was also to lower Equilibrant by one per day but just realized that looking over my notes...was thinking I was to do that after I started inosine! Good grief! I am then to increase inosine to 2 per day and reduce Equilibrant by one, if better after 1 week. Today is my 4th day on inosine. I still got hit today but not as bad as the last 3 days. The hit feels different than the hits I got when I was first on Equilibrant. My body feels like it's on fire and the pain throughout my body is even evident when I'm immersed in the pool. This is all a good sign, so I'm hopeful it will help me in the end. Except tonight I got a bit jittery...maybe because I haven't decreased Equilibrant yet!

I'll be writing an update for my blog on Health Rising soon. I have a lot of questions for Dr. C next time...in November. He wants me to get a blood test 4-6 weeks after starting the inosine.

On another note...I've lost my medical insurance, hopefully temporarily. When I saw Dr.C he gave me a huge discount because I had to pay cash. If he hadn't done this, I would have had to wait for my appointment.

I just read through this entire thread to find out what I could about inosine. Thanks so much to all of you!

Resting..as I continue to ride this trial-and-error roller coaster!
Good to hear from you! So sorry about your brother.
I think the inosine has really helped me. It's interesting that Dr.C is telling you to decrease Equilibrant while on it, I haven't done that, in fact I just raised my dose. Hmm, maybe I should rethink that.
I know some doctors say to take a month off of inosine, but I really don't want to do that -- did Dr.C talk to you about pulsing?
Glad you made it through all that stress -- hope things are calming down for you now.
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
Good to hear from you! So sorry about your brother.
I think the inosine has really helped me. It's interesting that Dr.C is telling you to decrease Equilibrant while on it, I haven't done that, in fact I just raised my dose. Hmm, maybe I should rethink that.
I know some doctors say to take a month off of inosine, but I really don't want to do that -- did Dr.C talk to you about pulsing?
Glad you made it through all that stress -- hope things are calming down for you now.

Thanks, Pittsburgh

Dr.Chia didn't tell me to pulse my dosage, but I will be a calling in in a couple of weeks because I'm not sure how far I am to go with increasing inosine and decreasing Equilibrant. He said if I get flushed I should separate the two by 2 hours. My blood tests showed my inflammatory response is down and my T cells are calmer. He told me again to watch for swelling of joints. He wants me to have my blood tests done 4-6 weeks after beginning the inosine, if I have insurance by then.

What brand of inosine do you take? Dr.C told me to get it from life extension, which I did, but the brand is Source Naturals. What is your dosage of Equilibrant and inosine now? Do you think the trial-and-error ever ends? I am hoping by 2 years with Dr. C I'll be on a stable regiment.

Did you say you have or had prostate cancer? I was surprised to read that. You are so young to have dealt with that!
Hope you are continuing to do better
resting...as I press on
 
Messages
59
Location
Pittsburgh, PA
Thanks, Pittsburgh

Dr.Chia didn't tell me to pulse my dosage, but I will be a calling in in a couple of weeks because I'm not sure how far I am to go with increasing inosine and decreasing Equilibrant. He said if I get flushed I should separate the two by 2 hours. My blood tests showed my inflammatory response is down and my T cells are calmer. He told me again to watch for swelling of joints. He wants me to have my blood tests done 4-6 weeks after beginning the inosine, if I have insurance by then.

What brand of inosine do you take? Dr.C told me to get it from life extension, which I did, but the brand is Source Naturals. What is your dosage of Equilibrant and inosine now? Do you think the trial-and-error ever ends? I am hoping by 2 years with Dr. C I'll be on a stable regiment.

Did you say you have or had prostate cancer? I was surprised to read that. You are so young to have dealt with that!
Hope you are continuing to do better
resting...as I press on
You results sound promising!
I have Life Extension brand inosine, it's in a blue and white bottle -- I think my wife ordered it from Amazon. I have been pulsing the Inosine, right now I am taking 4 per day, so 2 grams. I just upped the Equilibrant dose to 7, which is more than it says on the box -- I heard Dr.C in a MECFS Alert video say his son took 9 a day, so I thought I might try raising it. I don't have insurance either so I don't get any blood work, just go by how I feel.
I did have prostate cancer, but I had my prostate removed last year and so far, so good. At the time I hoped that maybe once it was removed the "fatigue" would go away, but no such luck. It's funny that while I had the cancer everyone was so sympathetic, while really this cfs thing is a million times worse and no one ever seems to care/believe in it. Not that I need sympathy, I hate it really. I'm lucky I have a very supportive wife and kids.
 

SOC

Senior Member
Messages
7,849
@PGHCFS~
I think you can overdo inosine to the point of causing yourself more problems. Dr Rey has my daughter increasing by only 250mg daily each week up to 1500mg (3 pills) per day -- so increasing to 1500 mg over 6 weeks. I've heard of other doctors pulsing it. If you've read up on dosing protocols and have chosen the one you're using deliberately, that's cool. :) Just thought I'd mention the more careful dosing in case you hadn't heard of it.
 
Messages
59
Location
Pittsburgh, PA
@PGHCFS~
I think you can overdo inosine to the point of causing yourself more problems. Dr Rey has my daughter increasing by only 250mg daily each week up to 1500mg (3 pills) per day -- so increasing to 1500 mg over 6 weeks. I've heard of other doctors pulsing it. If you've read up on dosing protocols and have chosen the one you're using deliberately, that's cool. :) Just thought I'd mention the more careful dosing in case you hadn't heard of it.
Ok, thanks. My wife printed up a protocol, I can't remember which doc, but that is (sort of) what I am following. I always wonder about the doses of these things -- they never mention a difference in mg depending on a persons size.
 
Messages
59
Location
Pittsburgh, PA
So a week and a half now on 7 Equilibrant per day. I have been walking around the block and doing some easy weight lifting, also an occasional James Bond shower. I feel ok, very little flu-like symptoms right now, but still fatigue. I remember RestinginHim saying that Dr.C said less flu, more fatigue means you should cut back on E, but I have less flu and somewhat less fatigue, so, I am not sure what I will do now.
This is the bet I have felt in years, but I want to be even better.
I have methylB12, methylfolate, and P5P coming from Amazon on Saturday so I will try those soon (my wife is trying to figure out methylation). Also, my wife fed me some iodine since she cooks with a lot of sea salt, not sure it did anything.
Hope everyone is doing ok.
 
Messages
14
So a week and a half now on 7 Equilibrant per day. I have been walking around the block and doing some easy weight lifting, also an occasional James Bond shower. I feel ok, very little flu-like symptoms right now, but still fatigue. I remember RestinginHim saying that Dr.C said less flu, more fatigue means you should cut back on E, but I have less flu and somewhat less fatigue, so, I am not sure what I will do now.
This is the bet I have felt in years, but I want to be even better.
I have methylB12, methylfolate, and P5P coming from Amazon on Saturday so I will try those soon (my wife is trying to figure out methylation). Also, my wife fed me some iodine since she cooks with a lot of sea salt, not sure it did anything.
Hope everyone is doing ok.


Congrats keep us updated.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
Hi,

I don't have any possibility to have any consultation with Dr Chia, because I live in Israel and too sick for travelling. Nevertheless I am very interested by trying the Equilibrant. I remember that Dr Chia warns those who have auto immune illnesses running in the family.

I don't know anyone with auto-immune condition in my family, BUT...
I have some antibodies:
Anti Scl-70 : 53.444 u/ml
Anticardiolipin antibodies IgM : 17.617 u/ml
SSB (Anti La) : 16.290 u/ml
ANA : +2 (out of +4)
No one here among internists and immunologists in the country was able to comment those results.

Is there someone on board who have some insight about the results, and if there may be some problem to try the Equilibrant... Even if I go low and slow.

Thanks a lot for your answer
 
Messages
59
Location
Pittsburgh, PA
I went up to 8 and then 9 Equilibrant, I started feeling worse. I am now back down to 7 E and I'm taking a one month break from Inosine. Today is a good day. I'm still walking around the block most days, but I've put the weight lifting on hold for now.
 

Christopher

Senior Member
Messages
576
Location
Pennsylvania
Hi,

I don't have any possibility to have any consultation with Dr Chia, because I live in Israel and too sick for travelling. Nevertheless I am very interested by trying the Equilibrant. I remember that Dr Chia warns those who have auto immune illnesses running in the family.

I don't know anyone with auto-immune condition in my family, BUT...
I have some antibodies:
Anti Scl-70 : 53.444 u/ml
Anticardiolipin antibodies IgM : 17.617 u/ml
SSB (Anti La) : 16.290 u/ml
ANA : +2 (out of +4)
No one here among internists and immunologists in the country was able to comment those results.

Is there someone on board who have some insight about the results, and if there may be some problem to try the Equilibrant... Even if I go low and slow.

Thanks a lot for your answer


I had no previous symptoms or results associated with autoimmunity. After I took E for a few weeks I started to crash and still occasionally get autoimmune symptoms (cold hands/feet, itchiness) that I did not experience previously. I think it overstimulated my immune system, possibly the astragalus. Now whenever I try it the same thing happens and it is not beneficial.

My friend take several daily with no problems like this, so it depends on your subset. I've found anything I take to "enhance" my immune system backfires on me.
 

SOC

Senior Member
Messages
7,849
I had no previous symptoms or results associated with autoimmunity. After I took E for a few weeks I started to crash and still occasionally get autoimmune symptoms (cold hands/feet, itchiness) that I did not experience previously. I think it overstimulated my immune system, possibly the astragalus. Now whenever I try it the same thing happens and it is not beneficial.

My friend take several daily with no problems like this, so it depends on your subset. I've found anything I take to "enhance" my immune system backfires on me.

Christopher, are you early in the illness? This is, have you had it less than about 5 years? There's some thinking (definitely not any certainty, though) that early in the illness we tend to be hyperimmune and then later become immune deficient. That's a gross oversimplification of a very complex system, of course, but the idea is that if you're in a state where parts of your immune system are already revved up, adding "immune enhancers" might push you over into serious sensitivities and autoimmune type reactions.

It would probably be best to get immune testing (if at all possible) before you try to modify your immune function. It would be far too easy to go the wrong way in altering your immune function and end up worse than you started. IMO :)
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
I just started taking Equilibrant about 2-3 weeks ago. I'm up to 4 tabs/day, which is the target dose that Dr. Chia told me to shoot for. But I'm not feeling anything, so I may just go up to 6/day. But I have a question. I want to take Beta Glucans and also Immune Factors (https://www.naturalhealthconsult.com/Monographs/immunfactor.html). Do you think these would interfere with the Equilibrant?

ttt, I take Beta Glucans intermittently with Equilibrant and have never noticed the Equilibrant be any less effective when I'm taking Beta Glucans
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
ttt, I would encourage you not to increase it too quickly as the effects can sometimes hit several days after taking it.

I wish you the best with your trial of Equilibrant. It continues to be for me the best help I have received!

Pressing on...to enjoy The celebration of the Savior's birth, continuing to Rest in Him
 

ttt

Senior Member
Messages
101
Location
Santa Monica, CA
ttt, I take Beta Glucans intermittently with Equilibrant and have never noticed the Equilibrant be any less effective when I'm taking Beta Glucans

Thank you, Patrick. And thanx for the update about your latest visit with Dr. C. In your blog, you said that he said that ME/CFS is caused by a retrovirus, but I thought he'd said it was caused by an enterovirus. Can you clarify?
 

ttt

Senior Member
Messages
101
Location
Santa Monica, CA
ttt, I would encourage you not to increase it too quickly as the effects can sometimes hit several days after taking it.

Thank you. You know, after about 7 weeks of taking it (and about 5-1/2 weeks of that was at a dose of 4/day), I wasn't feeling any difference from it. And one of my practitioners muscle tested it, and it was weak, so I stopped. I'm wondering if there's any point to going back to Dr. C if I don't want to do IVIG (I'm doing oral IgG -- taking Xymogen IgG DF 2000 powder).