Who's Had Their Coxsackie B Virus and Echovirus Antibody Titers Tested at ARUP Lab?

[Gingergrrl]

@Gingergrrl hello. How did the last test compare with the two previous ones?

This is a very good question and I am going to attempt to find my labs and post them... I just went through all of my medical folders and cannot find them but am going to keep looking. I am 100% certain that on all ARUP tests, the two EV's that were positive were Coxsackie Virus 4 and Echo Virus 11 and that the titers varied but were never at the 1:320 level that Dr. Chia considered an active positive. If I can find the records, I will come back and edit this post.

Edit: I am so sorry but I do not have a paper copy of the records. There is a period of time where I lost everything to mold (and these tests were a few months after that so I should have them but I do not).

 

[knackers323]

@Gingergrrl the fact the titres flipped within a month raises a few questions. Would have been interesting to see what the third test showed.

What was dr chias reason for multiple tests so close together?

Did you have any progress with enteroviral treatment?

 

[Banana94]

I am also interested in this tests for coxsackie and echoviruses. But what if they come back positive? Is their any medication which helps? if their is "only" Dr. Chias Oxymatrine/Equilibrant protocol than I can rather invest the money in ordering them, than spending 500 bugs for lab testing..
@Emootje what would be KDM's treatment if test result came back positive?

 

[Gingergrrl]

@Gingergrrl the fact the titres flipped within a month raises a few questions. Would have been interesting to see what the third test showed.

What was dr chias reason for multiple tests so close together?

Did you have any progress with enteroviral treatment?

@knackers323 I will continue to look for the results over the weekend in case I have them in the wrong folder and missing them (but the titers had not changed much).

Dr. Chia is not my doctor and I saw him for a one-off consult in Feb 2016. He only ordered the third set of tests and not the prior ones.

He offered no treatment and said I was not a candidate for oxymatrine or equilibriant b/c of autoimmunity. He dismissed my MCAS and allergic reactions completely and made disparaging comments re: my own doctor. Overall it was not a great appt for me but it was close to 2 yrs ago and no longer even on my radar!

Edit: typos

 

[knackers323]

@Gingergrrl so you've never tried any treatment for the enterovirus?

 

[Gingergrrl]

@Gingergrrl so you've never tried any treatment for the enterovirus?

There isn't any treatment that I am aware of and I asked every doc I saw including Dr. Chia in the consult. He said I was not safe to try Equilibriant b/c I have Hashimoto's & autoimmunity. I asked him about other options but was told there were none and my EV were under 1:320 so unclear if just showing past infection. I do believe that the IVIG (that I do for another reason) could help w/EV's and other pathogens though.

 

[Emootje]

@Emootje what would be KDM's treatment if test result came back positive?

@Banana94 the only antiviral KDM prescribed for me was isoprinosine. It didn't worked...

 

[knackers323]

has anyone had the ARUP test from outside the US or from the other side of the country?

they still offer it but they dont offer much help for the US $1300 odd they charge and its proving almost impossible to get done

any help would be much appreciated. anyone who got tested from australia especially

 

[knackers323]

I managed to get the test done
Coxsackie b type2 1:80
Coxsackie b type4 1:160
Echovirus type 30 1:320
All others <1:10

Tend to feel better with things that lower immune function though. Still very much in the dark

 

[consuegra]

Over the years I have tried to get various ME/CFS physicians to do this ARUP test on their patients, without making any progress. No one had the slightest interest. Over the years I have tried to get many ME/CFS patients to take this ARUP coxsackie/echo test -without any success. I have never gotten one patient to do the test.

My daughter, coincidentally, took this test multiple times over a ten year period. It wasn't until I met Dr. Chia in 2007 that I realized this was the coxsackie test to do. All other tests pick up next to nothing in my daughter, including the Focus test, which I did several times simultaneously with the same blood draw, going to both Focus and ARUP. My daughter's Coxsackie B4 on ARUP was >1:640 on every test, close to ten years running, 2005-2015. Many times her Coxsackie B3 was also consistently high at 1:320

There is a serious disconnect here. Somebody seems to not want to know something.

Chris

 

[aquariusgirl]

@consuegra what is she doing for treatment? results?

 

[consuegra]

@consuegra what is she doing for treatment? results?

Not much for coxsackie. She has tried oxymatrine various times with no apparent results. She is too sick to take a chance on Epivir. Various pharmaceutical drugs have complicated her illness. My own feeling is that many severe patients are severe from "treatments" - Klonopin, Lorazepam, Valtrex, Elavil, Rituximab, Valcyte and so forth. At the moment we work on trying to normalize metabolites through OAT testing and working on trying to improve sleep - and ditch all pharmaceutical drugs.

Chris

 

[Hip]

My own feeling is that many severe patients are severe from "treatments" - Klonopin, Lorazepam, Valtrex, Elavil, Rituximab, Valcyte and so forth.

I've never seen any evidence to indicate that; in fact in my recent poll, Valcyte came out as one of the best treatments for producing major improvement in ME/CFS.

 

[MB1980]

All i just wanted to post some recent numbers i have gotten on my coxsakie B virus. I thought the progression was interesting. I have been tested 4-5 times now.

Last August i tested at 1:80 for B3 and 1:320 for B4 I also had some incidental numbers 1:40 or less for PolioAB and Echovirus 30). Those numbers went down after about 6 weeks to 1:160 for B4 (B3 stayed the same). Over the next 6 months those numbers stayed constant, until i retested on April 3rd and B3 went up to 1:160 and B4 went back to 1:320. My D vitamin also came out as low (20ML), but i am in Chicago and it was right after the winter so that could explain some of it. During the time my titers went up i was exercising more aggressively and taking testosterone because my levels were low. After April 3rd, I started on Oxymatrine (2 a day), a 50,000 dose of Vitamin D once a week, cut out the exercise to only walking and light lifting and stopped the testosterone. Just got my numbers back and a huge reduction in my titers.

B4 is now 1:80 and B3 is 1:40. Everything else also went down.

Just wanted to put out those data points, it could be that I would be another responder to Oxymatrine, backed with Arup testing.

Unfortunately i still have fybromyalgia RA like symptoms.I am thinking about upping my Oxymatrine. I could do more, i just choose not to at this point.

Mike

 

[Hip]

Just wanted to put out those data points, it could be that I would be another responder to Oxymatrine, backed with Arup testing.

Interesting to see those reductions in antibody titers after oxymatrine. Are you actually feeling any better, in terms of increased energy or improved brain fog?

 

[MB1980]

Honestly i felt better or at least more normal when i was working out and taking testosterone. That said I think i generally have a mild form of CFS or FM (i have not been diagnosed with either). I still work, walk freely, golf. I would say i am at about an 85. My symptoms are joint pain/weakness in my ankle and wrists that stay for about a month but then goes away only for a few months only to come back. Tingling and pain in the forearms and shins. Some spasms as well.

 

[MB1980]

Just an update got tested again and my titers for B4 actually went down again to 40:1. Given the movement from 320:1 down to 40:1, I think it is safe to say that Equilibrium can work (i have also added Insonine). Now the bigger question for me is how do I phase them out. I don't think Dr. Chia will even see me given my low titers.

My initial plan is i am going to stick with Equilibrium and Insonine for 1 year (so about 9 more months).

 

[Sidny]

Just an update got tested again and my titers for B4 actually went down again to 40:1. Given the movement from 320:1 down to 40:1, I think it is safe to say that Equilibrium can work (i have also added Insonine). Now the bigger question for me is how do I phase them out. I don't think Dr. Chia will even see me given my low titers.

My initial plan is i am going to stick with Equilibrium and Insonine for 1 year (so about 9 more months).

I’m not totally sure on this but I think Dr Chia finds in patients that stop and restart oxymatrine the second go around isn't as effective as the first so you may want to stay on it indefinitely especially if it’s improved your symptoms and titers.

 

[MB1980]

What i read is for women they need to stay on forever. For guys he said 6 months but other places said one year.

 

[EddieB]

Hoping to bring up this thread for updates. Would love to hear feedback on what your taking and what’s helping or hurting.

I’m waiting for test results to come back from ARUB and Cambridge. Big confusing fiasco getting the test codes, not 100% sure they were right. Have to wait and see.

Apparently Cambridge has merged with another company and is now BioAgilytix Boston.