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I start to relapse every time I come off equilibrant

Discussion in 'General ME/CFS Discussion' started by tdog333, Oct 12, 2015.

  1. tdog333

    tdog333 Senior Member

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    I started taking equilibrant over a year ago, i've worked up to 6 pills a day every day, it was a miracle for me, i know not everyone is so lucky, but it helped me have more and more energy day by day. I still have a ton of health problems, I can only eat the same 4 foods every day without getting allergic reactions, i have minor gastroparesis, minor heart arrhythmias, chronic headaches, blood values all weird on lab tests(very high SHBG, slightly elevated liver values, high RT3), etc. I'm just trying to figure out what it is that makes equilibrant so effective for me, so maybe I can figure out the root of all this. I'm still young(23) this happened to me through a serious bacterial infection which almost killed me and I feel like led to a viral infection. I've been reading these forums and other forums for a long time and tried almost everything suggested, I'm steady at 2MG Methylfolate and 2.5MG mb12 every day(i have both C677T methylation defect).

    I think whats going on personally is a virus, or the severe bacterial infection/ the hard rx antibiotics I took messed things up with my nervous system, I think my vagus nerve isn't functioning properly, so my digestive system isn't working right, along with a lot of other parts of my body, just a guess though.

    Any ideas?
    Thanks
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @tdog333 I have no answers but am fascinated that you can only tolerate four foods due to severe allergies (I assume MCAS?) and you have cardiac, thyroid and methylation issues but can tolerate Equilibriant?!!!

    Do you see Dr. Chia or just take it on your own? Sorry I am no help and have never tried Equilibriant b/c I can't tolerate several ingredients or the orange food dye. In what ways does it help?

    Thanks in advance!
     
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  3. tdog333

    tdog333 Senior Member

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    @Gingergrrl I haven't really looked into MCAS to be completely honest, I have had pretty sub par doctors so I've had to figure a lot of things out for myself, I'll look into it more, I do notice it's worse with higher histamine foods. If I eat something other than the few "safe" foods I have my stomach holds on to it for a long time, and when it finally gets released I get pain in my intestines (like IBD type), surprisingly i tolerate a lot of pills and herbs, I've tried hundred of herbs and most of them don't do anything majorly wrong(but only a few help), I'm not a fan of artificial colorings but equilibrant seems to help a lot. It hurts my stomach if I take it on an empty stomach but with food it's not so bad. Everything is pretty exponential, so the more food I eat, or the more of x substance I take the more it upsets my body, so just a tiny pill or a little bit of herb doesn't do anything too bad, whereas if I ate a big meal of fast food or something(which I would never do now) I would be messed up for weeks. I forgot to mention I have hypoglycemia issues too sometimes.

    I never met Dr. Chia but I've watched every video he's ever put out and figured I'd give it a shot, I got a horrible herx reaction with just one pill when I started but after a month I was at the full dosage and feeling a lot better. It literally got rid of my CFS(in combo with a bunch of smaller things). I still am not 100% but I can work out pretty hard, walk around all day, and not be completely dead for the next week.
     
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  4. Hip

    Hip Senior Member

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    @tdog333
    If you stop taking oxymatrine and go into full relapse, you may not get a second chance. You may find that when you start taking oxymatrine again after relapsing, oxymatrine will no longer work for you. This is what Dr Chia found with some of his ME/CFS patients on oxymatrine. It is detailed on the Dr Chia videos in the Invest in ME Conferences. So Dr Chia does not recommend stopping.
     
    Last edited: Oct 13, 2015
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  5. tdog333

    tdog333 Senior Member

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    @Hip Wow, I had no idea, I just heard to stay on it for a year. When I start to "relapse" my digestion sucks, i feel sluggish, etc generally when I run out of pills, for example i just ran out yesterday and will get more in the mail in a couple days, it happens slow but definitely goes downward. Do you have the link to the video? Honestly I haven't kept up with what he's been doing in the past year and a half or two.

    I've been playing with the idea of taking more than 6 per day since they help so much. I remember reading oxymatrine can be liver toxic though?
     
  6. Hip

    Hip Senior Member

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    I think this info comes from the Invest in ME London 2010 ME/CFS Conference DVD, on which there is a 45 minute lecture by Dr Chia. It's not available online, due to copyright.

    Another links to those conference DVDs is here.

    Dr Chia has given a total of 4 lectures at the London Invest in ME conferences (in 2009, 2010, 2011 and 2015). These are all good quality videos, better than the Chia videos you find online. I have seen all but the 2015 video. All the ones I saw detailed the oxymatrine treatment.

    In the 2010 video he said that out of 15 ME/CFS patients who did well on oxymatrine but then relapsed again after stopping it, 2 of these patients no longer responded to oxymatrine when they tried to restart it. So if you stop taking oxymatrine and relapse (and I believe everyone relapses when they stop), there is a risk it will no longer work for you.

    I posted some info oxymatrine from this 2010 lecture in this post. Notice how patient number 3 in this post, who stopped oxymatrine and relapsed, could not tolerate even half a tablet of oxymatrine after she tried to restart it. Dr Chia had to give her interferon to try to get her back to where she was before she stopped the oxymatrine.
     
    Last edited: Oct 13, 2015
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @tdog333

    Thanks for your detailed reply. I am seeing Dr. Chia in Feb for a consult b/c I test positive for two enteroviruses and am curious what he might advise me.

    It sounds more like gastroparesis what you are describing re: your stomach holding onto food for a long time vs MCAS especially if you can tolerate a lot of meds, herbs and food dyes. Also that it is exponential for you and you react to large amounts whereas I can react to a toothpick amount (sadly!) of things.

    It is great you got so much relief from Equilibriant and thanks for sharing your story. @Hip or @halcyon can advise you better than me. I was just curious if you had MCAS or an autoimmune thyroid issue and Dr. Chia still prescribed it but it sounds like that is not the case.

    Thanks again!
     
  8. Hip

    Hip Senior Member

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    @tdog333
    You may be interested in reading a transcript of part of Dr John Chia's 2010 Invest in ME conference lecture, where talks about his oxymatrine treatment of ME/CFS patients. I have included this transcript below.

    In this transcript, I have placed in bold all the statements made by Dr Chia regarding relapse on stopping oxymatrine too early. One of his patients detailed in the transcript below took oxymatrine for a total of 27 months, and only after this time did she stop taking this herb, and then after stopping, she appeared to maintain the improvements that oxymatrine gave her. Thus it would appear that oxymatrine needs to be taken for a good two years before the gain made becomes permanent, and you can then consider stopping oxymatrine. It seems it takes a long time to fight off these enteroviral infections.

    If you stop taking oxymatrine too early, you will likely relapse.

    Dr Chia found that 52% of ME/CFS patients responded to oxymatrine. I believe half of those who responded experienced major improvements; the other half of these responders just had minor ameliorations in symptoms.

    So you appear to be one of the lucky 25% who experienced major improvements from oxymatrine. Let's hope you maintain these.



    Oxymatrine Slide 1.png

    "So, at about this time, we also started using the Chinese herb [oxymatrine]. We have patients import a preparation from China, Hong Kong, and the way we did it — because we really didn't have any funding, so I said, well, we've got to do a quasi study. So the first 100 patients we gave it to, about 52% of these patients responded. The next 114 patients I did not treat. So I waited three to six months, and then, only seven out of the 114 improved on their own without treatment. So, these are consecutive patients. We did not exclude anyone. Anybody who dropped out after taking one pill is considered a failure, OK. So it's . . . . . . analysis. The difference was statistically significant.

    Let's go down to here. Initially we just treated these patients for about three months or so. Then we learnt very quickly, after they stop, the patient relapses, very quickly, OK. So they were better, but then they got worse afterwards. Most of the patients who went back on it, improved. Now we have given this to 366 patients, and it's still about 52%, and these patients responded to oxymatrine. And also I forgot to mention this: so out of the 114 patients of this control group, 104 patients who we gave the same oxymatrine treatment came out at 52%.



    Oxymatrine Slide 2.png

    These are examples [see above slide] of how these patient responded, so you get an idea of what happened. Some patients did not respond at all. As you know, 50% of the patients did not respond. Some had mild responses and these are the dramatic examples.

    So one guy is 59 year old. He had two back-to-back infections, respiratory and gastrointestinal infections, and then developed severe CFS. He was bedridden for 18 months, couldn't work at all. He had epigastric and right lower quadrant tenderness, his enterovirus serologies were negative, but we found the viral protein in the stomach biopsy, actually quite a bit of it. So he took oxymatrine for two and a half months, and nothing happened. Then all of a sudden, he started having fevers, for 4 to 5 days. This gentleman could not do anything, except taking his son to school in the car. The rest of the time he is housebound. He couldn't do anything, OK. So he had no exposure to any sick people, his wife and children were not sick.

    So he had fewer for 4 or 5 days, and his body aches were a little better, and he had some mental clarity. Then the next 10 days he took this Chinese herb [oxymatrine], no more fevers. In the next two months, he went back to work, full time, and he's been three years in remission. It's interesting that when I saw him, every time I see him, he still has this, a little bit of this right lower quadrant tenderness, suggesting that there might be something still there, but his immune response is much better in guarding it.

    The second patient a 25 year old female with ME/CFS for five years. Energy levels about 3 to 5 of the 10. Diffuse myalgia, cognitive dysfunction, etc, etc. The coxsackievirus B4 antibody was greater than 1:640 repeatedly. So because she had a lot of pain, which I think is the inflammatory response, these patients don't tolerate high doses very well, so I said why don't you just take one tablet a day, and see what happens. I expect you to have some increase in symptoms in the beginning, but she did have that for about a week, then gradually over the next 10 days, the body ache disappeared completely. The next week she went out jogging three times a week. It's pretty amazing.

    So she felt pretty normal in two months, and she said "I feel normal, why don't we just stop it?" She stopped, two months later, all the symptoms came back. It is very hard to get rid of these guys [enteroviruses], OK. That's the one thing that I always know, in this type of illness: relapse. This is no different from hepatitis B or HIV: you treat patients with good drugs, antiviral drugs. If you stop too soon — or in the HIV case you can't really stop — the virus will come right back.



    Oxymatrine Slide 3.png

    This is an interesting patient [see above slide], that actually had a very nice response. She was a marathon runner before she became ill with a respiratory gastrointestinal infection, flu-like symptoms, while training for the race, so she didn't make it through the race. In fact, she almost died, she said. She was bedridden for the next two years. After the race, able to sit up, do business on the phone, or the computer for 1 or 2 hours. She's basically housebound, couldn't do anything else. She took the Chinese herb [oxymatrine], three, twice a day, had an initial increase in headaches, body aches, gastrointestinal symptoms, for two weeks, then felt pretty normal, by three months. She sat there, and she said "I feel normal," OK. And I was dumb enough to say "Well why don't we just stop, and see what happens. " So within 36 hours, she had a marked increase all the pre-existing symptoms. It was even worse than before she took the herb.

    And it's interesting now, before she was taking 6 a day, she could even tolerate half a tablet now, the pain would get so much worse, OK. Six weeks later, she said "I have to get back to that state, this has not happened to me in two years, OK, I wanna try something. " So I put her on a half dose of interferon, it is called Pegasus, every week, then in about two days, I told her to go back on the Chinese herb [oxymatrine]. In the next three weeks she worked up to six per day. By the end of the three weeks, the body aches went away completely. She was put on the combination for six months, then went on the Chinese herb for for another 18 months, so the total treatment was about 27 months. She's been off for more than 8 months, she only has mild symptoms, one day out of a month. It's exactly the same symptoms she had before. This is always before here periods, OK. It's telling you this isn't gone yet, but it's much better controlled.



    Oxymatrine Slide 4.png

    So when we did the cytokine gene studies [see above slide], this is IL-12 p35 plus p40 using the relative ratio of the gene expression, over IL-10, all the top 7 patients responded by a shift into the Th1 direction, OK. We have a 2-fold increase. My son I think is the second one or the third one. All the 10 non-responders did not change at all. So there is some indication that there is some cytokine gene changes.



    Oxymatrine Slide 5.png

    The side effects [see above slide] are basically increase in all the pre-existing symptoms. If you have to go through a fight, instead of using ineffective weapons, you're shifting the response towards the more effective immune response, then you have to fight another battle.

    So a number of the patients will have increased body aches, headaches, abdominal pain, nausea, diarrhea, fatigue — whatever they already had before. Dizziness, insomnia. A couple of patients complained of weight gain: they feel more hungry taking the herb. One or two patients had increase in swelling, but they already had this before. Joint pains: 1 patient out of 500 develop rheumatoid arthritis while taking the immune booster. She has a very strong family history of rheumatoid arthritis, l and was having severe joint pain even before the herbal treatment, and now she's on treatment for rheumatoid arthritis, and is doing fine.

    Two patients had transient increase in blood pressure, rashes, dry eyes and mouth, and it's interesting that we had two patients who took this for about two months and just continue to have headaches and no improvement. So instead of tapering off the Chinese herb [oxymatrine], they abruptly stopped it. In the next 24 hours, the patients had a huge herpes outbreak. Herpes 1 in one, herpes 2 in another one, which they have not had for a long time. So maybe the mechanism of action is correct: maybe when we're trying to shift the immune response over, but it's almost like spring-loaded, and when you stop abruptly, you will go back down, and maybe even worse.



    Oxymatrine Slide 6.png

    This [see above slide] is a product [Equilibrant] that we — my son and I — actually formulated, because to get this oxymatrine from Hong Kong, it was a little tedious. So we formulated it, and had one of the American companies make it. This was done under the a good manufacturing practice.

    So we used this [Equilibrant] in over 134 patients, and had about a 56% response rate. But maybe I'm a little bit better at picking the patients. The patients who have severe pains, I usually don't start them on this. People with just fatigue, this is not a bad thing to try. 88% percent of 51 patients that actually switched from oxymatrine to Equilibrant have continued improvement. Other patients may have some minor issues, so they rather take the regular Chinese herb. This is better tolerated, part of it may be because we started those much slower. Typically we start with one tablet day for a week to two weeks, and then gradually increased to 4 to 6 per day. My son and I basically take six a day to start with, an increase of pre-existing symptoms still quite common.



    Oxymatrine Slide 7.png

    This is an interesting patient [see above slide]: this is the second out of 5 who took the Chinese herb. This one was on Equilibrant. This is a 13 year old child who actually has ME/CFS, and pronounced gastrointestinal symptoms. By the time he saw me, he is already on nutrition by vein, because he lost 30 pounds, couldn't eat. And his stomach biopsy was markedly positive for enterovirus. His antibody tests actually were negative. So when I looked at his T-cells, the CD, the T3, T4, T8, they're all below normal.

    So when the patient took the Equilibrant, well, in two months the numbers all went up. Interestingly enough, another two weeks later, he actually was hospitalized, because he had fevers for 4 days. Just like the one I showed you before. And they thought he actually had a line infection, from giving him the intravenous nutrition. Actually there was absolutely no evidence for line infection, so I repeated his T-cell count as he was hospitalized. You can see the T3, when are you more, that is when he had fevers. And actually the CD8 increased out of proportion to CD4 — actually almost met here. And then, two weeks later, we measured again, kinda dropped down too, about the two month mark. He's feeling much better. We don't know what his outcome come is, because it still early. This only happened about six or seven weeks ago.



    Oxymatrine Slide 8.png

    We have some evidence — about 5 or 6 patients now — we've done stomach biopsies [see above slide] before the treatment, and also during treatment, or after treatment. So this is one good example of a patient who could not work, actually has a lot of stomach complaints, so we did a biopsy right before the treatment. She has two pieces of stomach biopsy look like this. You can see all these brown spots: it is just loaded with virus. This is at 1 4 One piece has some brown spots, this piece is negative. After treatment two pieces look like this: this is the 1 this the 4You compare this one, and this one. It's night and day. There's a marked reduction of the viral protein. And the two pieces were negative. The reason we do four pieces of biopsies is that there's sampling error, so if you just take one, you're going to miss it. So four pieces, is probably the best thing to do
    ."
     
    Last edited: Jun 10, 2016
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  9. tdog333

    tdog333 Senior Member

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    @Hip Wow, thanks for that post it is super informative, maybe I have a lot of enterovirus in my stomach like in the biopsy pictures above, when i stop taking equilibrant I get increasingly worse GI problems. Is there anything else very effective for someone who responds to oxymatrine? I've tried quite a bit of stuff but maybe theres something I haven't heard of yet.
     
  10. halcyon

    halcyon Senior Member

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    @tdog333 Dr. Chia has used some other treatments in combination with oxymatrine, things like ribavirin, amantadine, and lamivudine.

    If you respond so dramatically to Equilibrant there's probably a good chance you have a chronic enteroviral infection. It is very common for symptoms to relapse when stopping this treatment too soon. It's looking like many patients will need to be on these treatments for several years and perhaps even indefinitely with a maintenance dose because they can help drastically reduce viral loads but don't seem to completely eradicate the virus as shown above in the biopsy slide Hip posted.
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    @Hip any idea where we can find a transcript of Chia's 2015 lecture?
     
  12. Hip

    Hip Senior Member

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    Did you mean to say Dr Chia's 2010 lecture, the 2010 Invest in ME Conference lecture? The presentation itself is available on DVD, as copyright material, from the link given above, but this DVD is very good value for money. I have several of the Invest in ME Conference DVDs; the ones where Dr Chia has given talks.

    I do have a text transcript for this 2010 video if you want it.
     
  13. Jesse2233

    Jesse2233 Senior Member

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    I was curious about the 2015 one you mentioned and if Chia added any new findings
     
  14. Hip

    Hip Senior Member

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    The 2015 video I don't have, but Halcyon has seen it, and I understand the only major new thing in it is info about a brain autopsy study that Dr Chia conducted, in which more evidence of enteroviral infection in the brain was found. This and the various other ME/CFS brain autopsy studies are detailed in this post.

    I don't believe there is any update on his treatment protocols in the 2015 video. Oxymatrine is still the mainstay of Dr Chia's treatment, though he does often add additional antivirals to the oxymatrine protocol, such Epivir (lamivudine) 150 mg twice daily, although he found Epivir is not effective for echovirus 6 and 7. Ref: 1

    I read here that the Dr Chia thinks the antihistamine Tagamet (cimetidine) is synergistic with oxymatrine. You could probably substitute with Zantac (ranitidine), which is very similar to Tagamet, and is available over the counter.

    Chia also uses the immunomodulator low-dose naltrexone (LDN), but finds LDN only helps a small percentage of ME/CFS patients (but for those it helps, it does so very significantly). Ref: 1 Note that LDN may not work unless you also take vitamin D3.
     
    Last edited: Jul 20, 2017
  15. Jesse2233

    Jesse2233 Senior Member

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    Interesting on the Tagamet, that was a Dr Goldstein treatment. I wonder why there's a synergistic effect with the oxymartine.

    So the idea is that the Tagamet is supposed to make oxymartine work more effectively and more quickly?
     
  16. Hip

    Hip Senior Member

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    I guess so; the only info I have comes from that post I linked to. Dr Chia also sometimes adds rifampin to oxymatrine (see here).
     
  17. Jesse2233

    Jesse2233 Senior Member

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    Hey TDog333, still doing well on the Equilibrant?
     
  18. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Cimetidine is a potent cytochrome P450 enzyme inhibitor. It inhibits a wide array of the CYP enzymes, including CYP1A2, CYP2D6, and CYP3A4. As such, it is known to cause multiple interactions with other medications. As an enzyme inhibitor it would be expected to increase the plasma levels of drugs, and this is probably why it would potentiate oxymatrine. Note that other H2-blockers like ranitidine (Zantac) do not have this enzyme inhibiting effect, so probably would not work as potentiators of oxymatrine.

    Cimetidine (Tagamet) is also over the counter.
     
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  19. Hip

    Hip Senior Member

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    That certainly could be one reason why cimetidine (Tagamet) potentiates oxymatrine. Though cimetidine has several immunological actions, including increasing Th1/Th2 polarization, and preventing histamine from: (1) stimulating T-regs, (2) decreasing natural killer cell activity; and (3) decreasing IL-2 production (ref: here).

    IL-2 is a Th1 cytokine, so you would not want histamine to reduce it, if you are trying to boost Th1 with oxymatrine. And natural killer activity is low in ME/CFS, so you would not want histamine to reduce it further. Thus if cimetidine can block these effects of histamine, it might well be advantageous in ME/CFS and in oxymatrine treatment.
     
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  20. Hip

    Hip Senior Member

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    Dr Chia also found that the antibiotic rifampin (aka: rifampicin) enhanced the effects of oxymatrine:

    When added to the oxymatrine protocol, the dose of rifampin is 300 mg twice daily for 7 days. 1


    More info on Dr Chia's use of rifampin to boost oxymatrine here and here.
     
    Last edited: Mar 6, 2017
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