Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Early response to equilibrant

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by .jm., Apr 24, 2018.

  1. .jm.

    .jm.

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    This is just superficial, anecdotal, early, and possibly unsubstantiated, but maybe these are early evidence possible response to equilibrant.

    I started the titration procedure to begin Equilibrate about a month ago. I am now on two tablets per day. Recent changes are:
    • My sore throat came back since I saw Dr. Chia. However, it has recently reduced in intensity by about 30-50%. Maybe that is interesting.
    • My poop has been somewhat normal shaped for the last few days. Usually it is mushy.
    • Something changed about my sleep, but I'm not sure what exactly it is. It is still generally poor, but it seems to have changed slightly.
    Of course these are minor and anactotial things that may indicate nothing except the cyclical nature of CFS/ME. but there is a small chance that these are early indicators of responding to Equilibrant.
     
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  2. Dechi

    Dechi Senior Member

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    Wishing you continuing good results ! Sounds promising so far.
     
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  3. .jm.

    .jm.

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    Month 1.5. I just upped dosing to 4 tablets/day.
    2 interesting things:

    For periods of time that are several days in a row (but not continuously), my poop looks better than it use to. It has shape instead of being a pile of mush. This is not totally consistent, but previously my poop has been mush for most of the time.

    Insomnia is bad.

    I had a sore throat since October, except for a period of about 4 weeks around February. I think the intensity of the sore throat is slightly decreased, though not gone.
     
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  4. .jm.

    .jm.

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    still nothing more interesting to report. Insomnia is worse. I still feel mildly to moderately crappy most of the time.
     
  5. Hip

    Hip Senior Member

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    If your symptoms crescendo into a fever, that's a good sign as far as oxymatrine treatment is concerned, as after a few days when the fever is over, patients who get this fever (not everyone gets it) report feeling much better. The fever is when the tide turns in the oxymatrine treatment, with the immune system getting the upper hand over the virus.
     
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  6. bobbyD

    bobbyD

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    When I took oxymatrine, I got very unbeale headaches, I had to stop, any suggestions
     
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  7. .jm.

    .jm.

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    No fever or flu-like illness. Not much of any change except worse insomnia. (Actually, I haven't been sick since October)
    One thing is interesting.
    I had a sore throat since October. Then it cleared up for a few weeks in February. When I started taking Equilibrant it came back and has fluctuated a bit in intensity but never went away again. I think the few weeks it cleared up in February was just a fluke. The fluctuation occuring while I'm on Equilibrant is the only interesting that that has happened.

    Still, I was told give it about four months to see what happens.

    I also have the idea of 'sucking it up' and antagonize the fatigue on purpose now that I'm on equilibrant. Basically, going back to running 50 miles per week, dragging my ass out of bed exhausted and doing it again. If it doesn't work, I would be uncomfortable for a few weeks and it would clear up with rest -- not much different than when I was trying to continue to exercise in the fall and vacation. But if it did work, that would be great.
     
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  8. Hip

    Hip Senior Member

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    Maybe experiment with taking very low doses initially, below the dose level that causes headaches.

    Or consider inosine, which is another immunomodulator similar to oxymatrine (but I don't think it is as effective).

    Dr Chia is also now using tenofovir as an immunomodulator, with some good results.
     
  9. bobbyD

    bobbyD

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    thanks hip, when the CFS comes back, I get a swallowing issue and dry cough, with some anxiety, right now I'm using NAG, turmeric, flax oil, potassium citrate, and thorn multivitamin. The swallowing issue, makes me feel like I can't breath...then stress.
     
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  10. .jm.

    .jm.

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    Is this more recent than a few months ago?
     
  11. LINE

    LINE

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    My 2 cents: I am not sure how long I would be on the Equilbrant since it contains licorice root. Licorice will push adrenal activity (enchances or acts like cortisol*) which is great when using short term (please read more about this statement). The throat closure (swallowing) issue can be related to excess cortisol.

    Olive leaf and sophora are largely antimicrobials, which in my case was the causitive factor (microbes) in debilitating ME. If it was me, I would try the olive leaf, sophora and astragalus by themselves then observe changes.

    Found this statement: "Sophora root can be used both internally and externally. Internally, it can kill some parasites, treat dysentery and some bacterial infections, and promote the production of urine. Externally, it can be applied to the skin (usually with other herbs such as dictamnus and cnidium) to treat scabies, eczema and other skin ailments."

    *https://www.nejm.org/doi/full/10.1056/NEJM199110243251706
     
    Last edited: May 25, 2018
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  12. bobbyD

    bobbyD

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    I had a CFS flare up in march and april, that's when the throat issue was at its worst, then when the CFS subsided in early may, the throat issues also subsided. Now the last few days I have the throat issue and no visible signs of CFS, other thanks cold hands and feet.
     
  13. ljimbo423

    ljimbo423 Senior Member

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    Licorice root can also drain the body of potassium and cause high blood pressure. Depending on dose and length of time it's taken.

    I was taking a fairly high dose of extract for about 6-7 weeks. My blood pressure shot up to 185/125. Normally it's about 135/85.

    Jim
     
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  14. Hip

    Hip Senior Member

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    The primary action of Sophora extract (oxymatrine) here is its immunomodulatory effect, ramping up the Th1 antiviral mode of the immune system. That's how oxymatrine is thought to fight enterovirus.



    To my knowledge Dr Chia only started using tenofovir in the last year.

    Dr John Chia said he has treated around 35 patients with tenofovir but that it's still early for many of them and he will have more information soon on their response rate. He says that for patients tenofovir helps, the results are significant. However, Dr Chia says that so far, less than 1 in 3 of his patients have responded to tenofovir.
     
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  15. bobbyD

    bobbyD

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    olive leaf, sophora and astragalus for the throat issue? your thoughts?
     
  16. Hip

    Hip Senior Member

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    From your earlier description, it's not really clear on what you throat issue is. Has it been diagnosed by a doctor?
     
  17. bobbyD

    bobbyD

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    Went to ENT, took sinus CT scan, they said nothing was wrong. Any suggestions, Thanks Hip
     
  18. bobbyD

    bobbyD

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    feels like Post nasal drip...then my throats seems not to swallow very well.. leads to anxiety. I've had CFS for years but never had this issue before
     
  19. Hip

    Hip Senior Member

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    You might want to start a new thread on this topic, fully describing your throat symptoms. Your above description is very vague.
     
  20. bobbyD

    bobbyD

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    When I get this swallowing issue, it's usually with POTS, and your anti-anxiety formula did help a lot. I have an appt with CHIA next week, and I ask him. I really admire you, your knowledge base and ability to help people. You are the best source I have found, any other suggestions for CFS dr's on the west coast. You might be interested in this...

    ME/CFS COLLABORATIVE RESEARCH CENTER AT STANFORD
    OMF is continuing to fund the ME/CFS Collaborative Research Center at Stanford. These are the projects currently underway:

    • T cells and immunology

    Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME/CFS. This may help address the outstanding question of whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system. Click here to read more about the plans for this study.

    • Extended big data study in families

    Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, and Ron Davis, PhD, of Stanford University, are generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families. By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME/CFS. This data will also be integrated with the Severely ill Patients (Big Data) Study (SIPS), providing important validation and extension of those findings. Read and watch more about the multi-omics approach.

    • Diagnostic and drug-screening technology development

    Four technologies are being developed that could provide a biomarker for ME/CFS. Dr. Davis’s team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office. In the future, all patients will be measured on all of these diagnostic platforms, enabling us to compare their efficacy and determine what combination of them will be most useful to export for diagnostic testing. Click here to read more about the plans for this study.

    1. Nanoneedle: Rahim Esfandyarpour, PhD, in collaboration with Ron Davis, PhD, is validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME/CFS. This is a nanofabricated device that measures electrical impedence from a drop of blood. Thus far, this test is able to distinguish ME/CFS patients from healthy controls. The technology will be optimized for easy clinical adoption and scaled up so that numerous FDA-approved drugs can be simultaneously screened as potential treatments. Click here to read more about why a blood-based diagnostic could be a game-changer.

    2. Magnetic Levitation Device: Gozde Durmus, PhD, in collaboration with Ron Davis, PhD, has been developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from ME/CFS patients are less dense than healthy controls. One patient was followed for several months, consistently showing a light density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in 2018.

    3. Red Blood Cell Deformability Test: Mohsen Nemat-Gorgani, PhD, of Stanford University, and Anand Ramasubramanian, PhD, of San Jose State University, in collaboration with Ron Davis, PhD, are developing a micro-fluidic device that measures blood flow and deformability of red blood cells. In preliminary results, the red blood cells of ME/CFS patients and healthy controls differ in their time of entry into a capillary, rate of movement through the capillary, and the extent of deformation of the cell in the capillary. This has the potential to be yet another biomarker that would only require a drop of blood. (More)

    4. Mitochondrial Function Test: Julie Wilhelmy, in Dr. Davis’s lab, has developed a protocol using the Seahorse instrument that measures mitochondrial function. This protocol reveals a significant difference between activated T-cells of ME/CFS patients and healthy controls. The instrument is commercially available, which will allow other laboratories to easily reproduce our results.

    • Metabolic Trap

    Dr. Robert Phair, PhD, of Integrated Bioinformatics, Inc, has been working with Dr. Davis’s team at Stanford. He has found a metabolic pathway in ME/CFS patients that he hypothesizes to be stuck in a “trap” in an unhealthy state. His metabolic trap hypothesis emerged from genetic and metabolomics data from the Severely ill Patients Study (SIPS) combined with published enzymatic kinetics using mechanistic computational modeling. Dr. Phair and the team are eager to test this hypothesis as fast as possible, as it could be the underlying cause of ME/CFS and lead to effective treatment. (More) Read Health Rising's article about the Metabolic Trap

    source:eek:pen medicine foundation
     
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