The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Entervirus testing

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by minkeygirl, Sep 17, 2015.

  1. minkeygirl

    minkeygirl But I Look So Good.

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    I know dr chia does a stomach biopsy to test for this.

    I'm due for a colonoscopy soon and was wondering if there is a way to test with that and is the protocol and what to do with the sample anywhere?

    I can't get an endoscopy because I have a bridge in the front hanging on by a thread. I can't risk it getting knoc
    ked out. But I'm going to ask.

    Please tag me. Also not sure if this is in the right place

    Sorry about underline. Can't figure out how to remove it. i searched other threads but it's too much for me right now.

    Boy I sound insane. Sorry. Lol

    @Hip can you help?
     
    Last edited: Sep 17, 2015
  2. halcyon

    halcyon Senior Member

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    @minkeygirl Yes, Dr. Chia will I believe test colon tissue samples and has found enteroviruses there in his research.

    Basically you send in the requisition form to Chia's lab and then have the pathology lab that handles your tissue samples send them over to his lab.

    You may want to contact Chia's lab first and see what the protocol is for the colon samples, i.e. how many samples and where exactly to take them from. The requisition form only has the instructions for the stomach tissue samples. Their email address is listed on the page I linked above but I had better luck calling them.

    I just discussed it before hand with my gastroenterologist and he had no problem with grabbing the samples for me while he was doing the EGD.
     
    Never Give Up likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    @halcyon thanks so much! So I just tell her I want samples to send to dr chia? I haven't seen her in 5 years but I sort of remember her not being too progressive.

    Do you remember the cost? Oh I see its on there. $250.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    I'm not up to talking so I just emailed them. I'll see if they get back to me or not and then try to call them.
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    @halcyon I just read his prognosis. He says:

    "When the disease is persistent beyond 6 months, about 30% and 50% of patients will get better in 5 and 10 years, respectively. Many patients will not be back to be the same physical condition before the onset of illness."

    I've been sick over 20 years and I'm 63. Maybe I should just take oxymatrine and save the money? ( can't take Equilibrant because some of the ingredients make me sick)

    http://www.evmedresearch.com/education/prognosis.php
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There are possibly other treatments chia uses if one can get to him etc. He has used interferon and i think he has used a particular hiv med thats active against EV.

    I wonder if he would be able to get you ivig with your current labs and an EV diagnosis ? ?

    Just a thought.
     
  7. halcyon

    halcyon Senior Member

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    @minkeygirl Yeah I think I just gave my doctor a copy of the requisition form and the pathology lab that processes the samples just sent them over to Dr. Chia.
     
  8. halcyon

    halcyon Senior Member

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    It might be worth a shot. You may find this helpful to figure out dosing since it's not clear how much oxymatrine is in each Equilibrant tablet:
    It's probably good to start towards the bottom end of the range and titrate the dose up every 1-2 weeks as tolerated.
     
    Never Give Up likes this.
  9. minkeygirl

    minkeygirl But I Look So Good.

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    @halcyon Thanks so much.

    I have some white Tiger oxymatrine. I was quartering them and easing up. I can't remember where I was when I stopped. One tablet? I stopped, not because I had a problem with them but I stopped all sups to figure something out and just never got back on.

    I'm going to start them again tomorrow and then switch to the capsules. There's some threads here about the caps being better and you get a higher dosage.

    I just don't know about spending that money since I don't need the dx for insurance or benefits. Can I ask what your treatment is?

    Minkey.
     
    alkt likes this.
  10. halcyon

    halcyon Senior Member

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    @minkeygirl I started with tiny amounts of Equilibrant, then was put on inosine and Epivir as well by Dr. Chia. Right now I'm just taking the Epivir and 6 pills a day of Equilibrant.
     
  11. minkeygirl

    minkeygirl But I Look So Good.

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    Thanks @halcyon I took Immunovir and never noticed much from it. I got my oxymatrine out to start tomorrow. I've been looking into ARV's, (isn't that what Epivir is?) and this of course is the most expensive one.

    And the email address from Chia's website is not good.

    I'm about 40 minutes from Chia, but have no way to get there. This helps a lot.
     
  12. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Dr. Chia would probably tell you to wait to start the oxymatrine until after the biopsy. The oxymatrine will kill off some of the enterovirus and the purpose of the biopsy is to find and identify the enterovirus, thus making it more difficult to find.
     
  13. halcyon

    halcyon Senior Member

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    @minkeygirl Yes, Epivir is a reverse transcriptase inhibitor so it acts as an ARV. It's also used for hep B. It is pretty pricey, I'm lucky that my insurance covers it.

    I do recall having trouble getting a hold of them via email. You might try evmed@sbcglobal.net. Pretty sure if you call you can get in touch directly with the person that runs the lab.
     
  14. minkeygirl

    minkeygirl But I Look So Good.

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    @heapsreal it doesn't matter if he could get IVIG (if I could get there). My insurance won't pay for it because he's not in my plan. Also @halcyon said he gets Epivir which is the most expensive of the ARV's.

    @Never Give Up Thanks for the advice. I'm hesitant to spend $250 right now, even if my doc would do it, since I have no one to RX anything for me even if it did come up positive. I might as well just take the oxymatrine.

    @halcyon no energy to talk right now. Maybe Monday if I get home in time after my GI appointment. If she won't do it it doesn't make any difference.

    Pretty much everything I have tried has done none to little. I'm one of those treatment resistant people. I'm pretty much over throwing money away.
     
  15. minkeygirl

    minkeygirl But I Look So Good.

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    @halcyon I found Epivir pretty cheap. #30 100 mgs for $16.99.
     
  16. halcyon

    halcyon Senior Member

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    @minkeygirl That is pretty cheap. The dose that Dr. Chia uses is 150mg once or twice a day.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @minkeygirl I don't know if this will be helpful, and don't want to burden you with more info, but if you are even remotely considering seeing Dr. Chia, I would get onto the waiting list now. When I called it was a seven month wait and I have an appt in February 2016.

    I made the appt as a consult b/c I test positive for two enteroviruses with ARUP labs (the only lab that Dr. Chia uses and considers valid) and it is one avenue that I have not pursued (even though I have tried other anti-virals that did not help me.) I know I cannot take Equilibriant b/c I have Hashimoto's Disease and it contains an orange food dye that I am allergic to but I want to hear any other suggestions that he may have.
     
    halcyon likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wonder if cmx001 is effective against EV??
     
  19. Mary

    Mary Senior Member

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    @minkeygirl - I saw Dr. Chia in Oct. 2013. He just used blood work, didn't do a stomach biopsy or endoscopy. And he used Quest Labs, he didn't tell me I had to go to a different lab. I don't know if he's since stopped using them.

    Anyways, my labs were positive for Echovirus 6 and 7, and Coxsackie B3 and B4, as well as HHV6. He had me try Equilibrant, which did nothing for me, good or bad, though I have heard that it helps some people. Then he had me try Inosine - initially it did nothing for me, but some months later I retried it and it boosted my energy some. At the time, he had nothing else for me. Perhaps he's using something else now.

    Perhaps your regular doctor could order the echovirus labs, if you have difficulty getting stool testing done.
     
  20. minkeygirl

    minkeygirl But I Look So Good.

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    @Mary Thanks. I got tested for Coxsackie a few years ago. I don't remember the results. I'm thinking why not just use oxymatrine and inosine on my own. Although immunovir did nothing for me so I don't know why this would. I could ask the GI to run labs for coxsacke but I don't know.

    without have a doc willing to rx the big guns like epivir, I don't see why I should waste my money. although my insurance uses quest so the labs wouldn't cost me.

    I'm much sicker than you so I'm not expecting much. And I read some blogs about people who have seen chia. The rate of improvement isn't that high so... I'll figure it out over the weekend.
     
    Mary likes this.

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