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Equilibrant vs. Oxymatrine

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sinclair, Nov 28, 2014.

  1. Sinclair

    Sinclair Senior Member

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    I was wondering whether people having zero or just partial response to Equilibrant (or intolerance to it, or intolerance to high doses) have got better results with some changes on the intake form, or when moving to any other Oxymatrine supplier.

    For instance, @Hip has suggested here powder oxymatrine could be better absorbed than tablets.

    And the malabsorption problem makes complete sense to me since I daily complement Equilibrant intake w/ Selenium and every three days w/Astragalus, being both Equilibrant components.

    However, considering the other components of Equilibrant, I don't know whether it make sense to reduce Equilibrant tablets to powder.¿?

    In the four months I have been on Equilibrant, I had only one week of severe flu-like symptoms (suggesting effective long-term response) which happened by the 2 and 1/2 months of Equilibrant intake, after an increase in Astragalus supplementation. Beyond that, Equilibrant works for me, mainly, as an effective short term symptom reliever, at the current daily dose of 2 am - 1.5 pm tablets, which I have not been able to move up or down.

    Thus the questions I'd like to raise are:

    1. Partial or non respondents to Equilibrant do get better results on alternative Oxymatrine suppliers?

    2. People unable to tolerate the Equilibrant max. dosage (6 tablets), what strategies have you developed in order to increase your dosage from the well-tolerated level?

    3. Has anyone tried to powdering Equilibrant tablets and getting better results from it?

    Thanks for sharing your experiences!
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I have taken White Tiger Oxymatrine because I can't tolerate many of the other things that are in Equilbrant. I stopped, not because I was having issues with it, but was planning on getting the 300 mgs capsules. It makes sense to me that the powered is better absorbed. And that way I'd only need to take 2/day to get the same amount as the White Tiger.
     
  3. RYO

    RYO Senior Member

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    I am currently trying powdered form of oxymatrine or ku shen and powered astragalus from 1st Chinese herbs. Too early to compare with equilabrant. I tried equilabrant for 6 to 8 months with only mild improvement.

    I am mixing powder with 1/4 cup of warm water. Oxymatrine is bitter. I am hoping for better response. So far, my allergic rhinitis symptoms improved in 3 days. My PCP is monitoring electrolytes, kidney function, CBCD, LFTs and TSH.

    I think the gut is reservoir for chronic enteroviral infection which may also somehow affect vagal nerve function.

    What I am really hoping for is improvement in leg weakness and pain. Now using wheelchair for longer distance walking (airport, mall, etc). Not sure which is worse - debilitating fatigue or feeling like your legs and body wrapped in barbed wire...

    Some Chinese researchers suggest both herbs can have antiviral properties. Fortunately, I have not experienced adverse effects in the past with equilabrant.

    Still waiting on NIH. I am currently trying contact researcher at Perdue who is studying effects of enteroviral D68 on children with paralysis and muscle weakness.

    It's difficult to fight feeling despondent. I wish there was ME/Cfs patient advocacy group.
     
  4. halcyon

    halcyon Senior Member

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    Have you looked into trying any of the other treatments Dr. Chia is currently using in combination with Equilibrant (inosine, Epivir, Amantadine, etc)?
     
  5. RYO

    RYO Senior Member

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    I have only tried inosine along with equilibrant. I didn't notice much difference. I haven't tried Epivir or Amantadine.

    Have you had positive experience?
     
  6. halcyon

    halcyon Senior Member

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    I'm on a combination of Equilibrant and Epivir and will soon add inosine. I've only been on the Epivir for two weeks, but I am noticing subtle positive changes.
     
  7. RYO

    RYO Senior Member

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    Overall, I think it is difficult task for someone with CFS/ME to wade through the many posts about potential treatments, diets and supplements.

    One of the things that has bothered me about Equiliabrant is that despite the fact I respect Dr. Chia's work, I think there is a conflict of interest when a physician has a financial interest in Equilabrant. There are reports of 50% response rate but this information has it's limitations because a sufficiently powered placebo controlled double blinded study is still the gold standard. I often wonder what the placebo effect rate is in the CFS/ME population.

    It is often out of desperation that most of us embark on trying a myriad of diets, supplements and medications in hopes of any improvement. Even Dr. Montoya has alluded to the possibility that some of his patients who responded positively on Valganciclovir maybe have not been on the basis of antiviral effect but an antiinflammatory effect by inhibiting glial cells.

    This is our current reality and I am certainly desperate as any other CFS/ME patient to get their life/health back.

    It is interesting to read the traditional chinese medicine view on CSF/ME. They often describe an "internal dampness" that is chronic. This is what oxymatrine or Ku Shen is suppose to help alleviate. I am not sure why my brain fog and crushing fatigue gets better after using oxymatrine and astragalus but it may be an antiviral effect or perphaps these Chinese herbs alter my microbiome. I agree with others that feel a powdered form of oxymatrine may be more effective. If you crush equilabrant, you will instantly notice the bitter taste. If our gut lining is indeed chronicly infected with enterovirus, it makes sense to me that in a pill form Equilabrant may not completely dissolve until it gets to your small bowel. I have read that in China, oxymatrine is given in IV form. It would be interesting to see a study on the pharmacodynamics of oral vs IV oxymatrine.
     
    The Lady of Shalott likes this.
  8. halcyon

    halcyon Senior Member

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    I respect your opinion but I don't feel the same way. I would be surprised if he makes much profit from selling Equilibrant. I think his primary motivation in creating it was to have a treatment option for his patients.

    He has definitely tested beyond subjective measures of improvement with oxymatrine. He has demonstrated a reduction in enterovirus protein levels in stomach tissue post treatment. Is it a cure? Of course not, it's only a plant compound. This is about as good as it's going to get without help from the drug companies. The only other option we presently have is to borrow antivirals for other viruses that may only have a weak effect against enteroviruses.

    Dr. Chia mentioned to me that he had a patient referred to him by Montoya. He implied that Valcyte was making them worse and that they didn't see any improvement in their enterovirus infection until they got off the Valcyte.

    If we truly do have an enterovirus infection in our brains, it seems like a really bad idea to inhibit microglia.
     
  9. halcyon

    halcyon Senior Member

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    What dose of oxymatrine are you taking?
     
  10. RYO

    RYO Senior Member

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    I am using approximately 2 tsp twice daily. It's difficult to compare but I feel this is equivalent to 3 tablets of equilabrant twice daily. I have been to traditional Chinese herbalist and have taken other herbs in similar fashion. It has only been approximately 2 weeks since starting this regimen.

    I started a lot slower with equilabrant in the past. I have also tried betaseron for 6 months than a year later for 4 months. I got the most improvement when I took initial betaseron but it is very difficult to take. I don't have the strength to try again for my current relapse.

    I am going to see Dr Tian who is a well regarded acupuncturist and herbalist near Tampa, FL in a couple of weeks. I am hoping to try other Chinese herbs that may be helpful.

    I applied to NIH center for undiagnosed diseases 3 months ago but recently received rejection letter. I plan to see a local geneticist at Chapel Hill to see if they can run genetic tests to explain my chronic leg weakness and pain.
     
  11. halcyon

    halcyon Senior Member

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    Are you using the powdered herb or powered concentrate from 1stchineseherbs.com?

    Sorry to hear that. Did they give a reason or just a generic rejection? I wonder if anyone with ME has ever gotten into that program. I've seen a number of people here talk about trying but nothing more.
     
  12. RYO

    RYO Senior Member

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    I am using powdered form of oxymatrine and concentrated powder for astragalus (1/2 tsp twice daily).

    NIH just sent generic letter.
     
  13. RYO

    RYO Senior Member

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    Some general thoughts about taking chinese herbs. Equilabrant has proprietary blend of several herbs. I am sure there is variability in different batches. My general rule of thumb on oxymatrine is that you should slowly take higher doses until you feel get that "hit by a Mack truck" sensation then decrease dose by half (I am currently taking bulk oxymatrine powder). This is the inherent problem with taking Chinese herbs. It is difficult to find the right dose. Another obvious variable is that an individual may metabolize Chinese herbs at different rates. Who knows in terms of length of treatment.

    Currently, I have decreased my oxymatrine dose and increased dose of Astragalus. Astragalus seems to help more "day to day" fatigue for me as well as lift brain fog.

    Finally, you should understand these risks and others such as herb drug interactions before you embark on taking Chinese herbs. Unfortunately, treatment for CFS/ME is a crap shoot most of the time.
     
  14. halcyon

    halcyon Senior Member

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    If the pure concentrated form is used, the amount should be pretty constant yeah? I measure my Equilibrant dose out on a milligram scale and I find the effects to be pretty darn constant.

    That's more or less how Dr. Chia told me to take it. You take the biggest dose that doesn't cause obvious flu-like symptoms.

    Very true, the effects seem to be highly individual. The length of treatment could be a year or more from what I've read and may even require maintenance doses beyond that. You can get the viral load down to the point where the symptoms from the immune response are much less debilitating, but the virus is still there and can grow back to debilitating levels and cause relapse. You may find this interesting, Dr. Chia has some case examples in there.
     
  15. RYO

    RYO Senior Member

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    The labeling speaks for itself. I assume Dr Chia has sourced his herbs from a specific reliable vendor but we are talking about botanical products. FDA regulations do not apply. Has anyone ever had third party analyze equilibrant? Again, I respect Dr Chia and his work. I have dealt with him as a patient and I am confident he is looking out for best interest of his patients.

    Despite his dedication, I find it confounding that no one in the current scientific community has put forth the effort to duplicate his results. Your scientific footing is always stronger when you can show reproducible results.

    My perspective is that traditional Chinese medicine has it's merits. Good patient care is still part art as well as science. I also feel there is more variability from one TCM practitioner to another. Dr Chia embarked on treating his patients with equilibrant because of the success he achieved with his son Andrew.

    We all struggle with this debilitating illness and like many others I have tried to work towards a better understanding of the pathophysiology of disease. It is still theory that a subset of patients have chronic enteroviral infection or other viral reactivation. How is it that a respected virologist like Ian Lipkin has not been able to identity "smouldering" virus. Perhaps it is because we are still not reliably able to detect viral RNA in target tissue. It is unclear whether any chronic infection will ever be found. What is even more frustrating is that it appears some patients respond to B cell inhibitor such as Rituximab. Does it make any sense to you that an immunosuppressant will help someone with chronic viral infection.

    My own short trial with prednisone worsened my previous relapse.

    I agree with rheumatologist that suggests there are subtypes within CFS/ME.

    I have very prominent muscle symptoms which started after severe viral illness in early summer. This has led me to believe that an Enterovirus (coxsackie) was original viral trigger. I had muscle biopsy sent to special lab at Baylor. They did not find any evidence of viral RNA. I still have more questions than answers.

    I sometimes actually prefer the traditional Chinese medicine description of "chronic internal dampness". I own 3 electric blanks and several heating pads. I have often wondered whether Enterovirus affects smooth muscle of blood vessels as well as skeletal muscle. I also question whether a part of symptomotolgy is from neurotoxic effects of Enterovirus.

    Hopefully public awareness will grow and eventually this will lead to more research funding. Either that or someone with extraordinary wealth and/or fame contracts CFS/ME. I suspect the chances are better than one of us winning lottery jackpot.
     
    The Lady of Shalott likes this.
  16. halcyon

    halcyon Senior Member

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    There's just no interest in it and it confounds me as well. Probably the only reason Dr. Chia pursued it was because his son was sick. The fact is though that his work is duplicating a lot of other research on enteroviruses and ME, going all the way back to Ramsay himself. I didn't get a chance to ask Dr. Chia about it, but another patient mentioned that the CDC finally requested samples from Dr. Chia to look into his work. Unfortunately this was around the time the ebola outbreak started so it probably got pushed aside.

    Interesting that it didn't turn up positive. Enterovirus infections are patchy so there is always a chance of sampling error. Only one of the biopsy samples from my stomach tested positive for VP1 protein.

    In this study they only found enterovirus RNA in the muscles of 20.8% of the CFS patients they tested, but 58.3% of them had an abnormal lactate response to exertion. We're definitely a heterogeneous bunch.

    My understanding is that Lipkin only looked at plasma so far. We know that there is little to no viremia present in these chronic infections. Even in acute infections it can be hard to get a positive PCR test.

    I don't believe Rituxan is going to show much success in a large percentage of patients. I've already seen a number of patients report no improvement on it. I agree it doesn't make much sense to kill off the humoral immune response in patients that likely have a chronic infection. One of the things Lipkin did find is polyclonal B cell expansion which points to the fact that the immune system is working to fight an infection. Those of us with elevated viral antibody titers already knew that though.
     
    The Lady of Shalott likes this.
  17. RYO

    RYO Senior Member

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    I have read posts allude to T cell abnormality. It would nice if someone looked into immune system genetics in CFS/ME patients vs normal control subjects.

    It is difficult for me to understand why I successfully fought off a multitude of viral infections in the past but was unable to fight off my "sudden illness" at age 43.

    Most people who are known to have viral trigger were otherwise very healthy before onset of CFS/ME.

    I am sure this is the same question that the parents of children who were paralyzed by Enterovirus D68 are asking themselves.

    Virulent mutating virus evading host defense. It would be nice to know whether it is unique viral virulence vs host susceptibility. It is likely combination of both.

    Since onset of my severe viral illness, I have one bout of viral gastroenteritis and two viral upper respiratory infections. At the time of infection I felt worse than usual but resumed my usual misery.
     
  18. RYO

    RYO Senior Member

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    In many ways oxymatrine seems to have some similarities to pegylated interferon for Hepatitis C. It has less than 50% chance of clearing viral infection. At higher doses, it causes severe fatigue. It may not cause depression but most of us are depressed from physical effects of CFS/ME.

    Are there patients out there that have ever been cured with oxymatrine?

    I have heard that Dr. Chia's son is doing very well but I wonder whether this can be attributed to oxymatrine (Chinese herbs) or the fact that he contracted illness at early age.

    I have not read any specific studies but my impression is that younger patients have better prognosis.
     
  19. halcyon

    halcyon Senior Member

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    Indeed, oxymatrine has been found to cause a release of interferon gamma as well as other th1 cytokines. The combination of oxymatrine and Epivir has actually been used for Hepatitis B with some success it seems.

    If you take a look at the link I posted above in post #14, Dr. Chia noted a number of patients treated with oxymatrine returned to work. I'm not sure they would call themselves cured, but being able to return to work is significant.

    It's hard to say. He also gave him interferon as well as Epivir and probably other things as well.

    I'm not sure either but this wouldn't surprise me.
     
  20. RYO

    RYO Senior Member

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    I started taking equilibrant and inosine 3 months after my initial illness. I went "back to work" - 10-20% of previous schedule 2 months after starting equilibrant. Within 1 month, I was miserable. Although I tried to limit my standing or walking, I felt like I ran a half marathon when I got home. For me, chronic hip and leg pain/weakness is a very prominent feature.

    This is when I researched treatments for viral myocarditis and came across a study by Dr. Kuhl in Germany. He used interferon beta for 6 months at high doses (2 mg/day) and showed reversal of cardiomyopathy in a good portion of his patients.

    After 6 months of interferon beta, I was working 30-40 % of previous work schedule.

    3 relapses later and almost 3 years after my initial illness, I am back to square one and considering abandoning my career.

    I am not sure I would consider myself a success story but I probably got diagnosed sooner than most.

    It is incredibly frustrating. After reaching out to PhDs studying Enterovirus and expensive evaluation at tertiary medical center I am not optimistic about the future. I apologize to those of you who have suffered with this illness for decades. How does one endure this disease?

    After rejection from NIH, my back up plan is to meet with genetic specialist next month. To be honest, I am more hopeful that I will have a "fruitful" meeting with respected practitioner of traditional Chinese medicine.
     
    wintersky likes this.

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