EDIT: Decoding EliSpot results - predominantly EBV?

Can someone help me decode my test results? I've been sick for 2 years - in and out of neurologists offices and MRI machines - and was preparing myself for a lyme/bartonella diagnosis today and my elispot test says nothing about lyme and everything to do with EBV and coxsackie virus.

In fact, my latent EBV result is the highest I've ever seen on an Elispot test at 13SI (3+ is positive).

I can't remember if Elispot comes back negative if it can still mean I have lyme... or if I definitively DON'T have lyme now??

The brain fog is real my friends.

Help.

***EDIT:

There's a note on the bottom of all of the infection results that says - please recognize that there were less lymphocytes for stimulation in the EliSpot, the result of the current activity can be higher (General T-cellular immune deficiency? Virus infection with EBV CMV, HSV1/2, VZV, HHV6, CoxsackieVirus?).

Has anyone seen that before??

I'm waiting for separate test results for the "CD's" (they didn't send the right type of vial for that), which as I understand will help determine whether or not I have lyme that ISN'T being actively fought against due to my immune system being completely squashed.

Post Edited (Moonchez) : 9/26/2017 6:49:00 PM (GMT-6)

Moonchez - I'm not knowledgeable in the Elispot tests.
But I do think they rely on an immune response for a positive result.
This would mean false negatives would exist. (Our immune system not being able to mount a response.)

What is the "CD panel" ?


I do know that LD should be a clinical diagnosis with testing used as a backup.

You have symptoms consistent with Lyme and co's - which promoted testing, differential diagnoses ruled out.

Did you have a Tickbite and/or bullseye rash?

To answer your question - I think more members (including Mod's) are more familiar with the Igenex WB.
FYI - the Mod's aren't necessarily more knowledgeable than the 'regular' members - and aren't expected to have answers for all questions asked.

Moderators are really just regular members that have assigned responsibilities.

No need to apologize...I just wanted to explain.


You mentioned you're in Canada. Where - East or West or in between?
Your LLMD must be in the U.S.?

I know here in BC, many of the LLND's are using Armin Labs now.

Did you ever do an Igenex WB? I would do that - if it's important for you to have a positive...with the Igenex, even if it's not positive, you may have some lyme specific bands show up...which is all you need.

Your LLMD isn't wanting to clinically diagnose you at this point?

Re: WBC - mine is low...it doesn't always go up with infection...if it's been fighting hard for a long time.

Oh, you're in BC!!!!


I'm on Vancouver Island.
So you talked to Dr. E M.? I talked to him several times...he's amazing. I couldn't believe he actually called me back...the first time I called him. I wish I had listened to him then.

My story: 14 months, 2 Endocrinologists, an ENT Dr., a Neurologist, a Physiatrist (didn't know they existed), a Neurosurgeon, and several 'regular' MD's.

LLMD - Is it Dr. Z.? I know she likes to use Armin Labs for testing.
If it is her, I've heard she doesn't treat for long enough - she can't under the BC Medical system.

You can be treated by a LLND.

Hi, sorry to hear about your experience and apologies in advance if I am of no help to you.

I had tests sent to arminlabs in Germany and I tested positive for EBV and Coxsackie also with the addition of Mycoplasma. I believe all my Lyme tests came back negative.

I did have a Borrelia test come back positive in a lab in Australia so I am not even sure if I have Lyme or not but I’m being treated for it at the moment, in addition to the Mycoplasma and Coxsackie.

I am following your thread and sharing my anecdotal experience in hope of some guidance for the both of us.

Girlie -

I am. Just outside of Vancouver. Yes, EM. He's lovely. So kind and thoughtful. He gave me wonderful advice, but as is so often the case in the beginning, you don't know up from down and the medical community/family/friends have you spinning in circles so its hard to know which way to turn.

I had so many stop-starts and weird things come up that had things going in different directions. My GP is a brilliant man and to this day is STILL convinced I have syphillis or HIV (he's had me tested 3x - they always look at me funny at the lab). Been married 10 years... not either. LOL. And the infectious disease guys are close. I bet if I gave them these new tests, they might circle back to lyme (which I would inevitably test neg so I won't...yet).

Never heard of a physiatrist. Its a...? They almost tried to send me to a psychiatrist once because one neurologist decided my stutter/stammering was "likely brought on by childhood psychological trauma" but when I was like, ok, when do I go? He balked and gave me topiramate which actually ended up taking down the pressure in my head and stopping the more severe of my stuttering/falling symptoms. With women its always psychological right? *exaggerated eye roll*

And I'm so sorry for your journey. The "revolving doctor game" SUCKS. As lovely as our healthcare system can be, its also designed to get lost. It takes a strong disposition and well... not lyme to succeed. How did you manage to finally figure out lyme??

Dr. Z - yes. And I've heard they've started to give a bit more free reign with Elisa positive cases. At least that was the take away I took from the lyme summit that was SUPPOSED to promote new lyme literature and protocols across Canada but really just created a document that "plans to address a future discussion" blah blah blah. What a waste....

And finally, LLND.... I have mixed thoughts. The people I know that have been successfully treated for lyme got full course triple antibiotic therapy (one IV and one oral) in conjunction with herbal remedies and supplementation for co-infections. All of the LLND I've seen want to give me all sorts of weird things. As someone who goes to alternative forms of healing, my patience and belief only stretches so far.... and my health is particularly bad right now. I need to treat asap and properly.

Pirouette -

Thank you, I appreciate that but you're exactly right... I'm speaking to a bunch of people on the same journey. If ANYBODY knows how this feels, its you guys! So I'm sorry. I think I'm just close to one of those "long cry" moments and I hate those (I'm vehemently trying to avoid it) so I just spit fire for a while instead. The husband is LOVING it.

OK, so... I need to wait for the CD things, they'll give me an idea of how squashed the immune system is. I need to treat the EBV and coxsackie and see if I can get the lyme to come out to play? And send off to the states for the IGeneX test?

By antiviral RX do you mean valcyclovir? I had a 4 month - what I thought was a coldsore but could have been HandFootMouth - and so I have a standing unused prescription for daily therapeutic antiviral treatment from my neurologist (they thought I was having recurring viral or aseptic meningitis possibly to go along with it). I just had been putting it off for a few weeks while I was looking into lyme.

Post Edited (Moonchez) : 9/27/2017 2:14:44 AM (GMT-6)

I hadn't heard of a Physiatrist, either. It's a Dr. who specializes in rehab, and pain meds.

I was sent to him to have an EMG and a NCS. He was an odd duck.

After the EMG and NCS was done...he said to me: "This isn't your fault."
And, he then asked if my husband could come in, which I agreed to.

Then he said to him "I told your wife she doesn't need to apologize, this isn't her fault. She's a nice lady."

What a weirdo. My husband looked at me with this expression of "huh?"

I was never sent to a Psychiatrist. My GP has been really supportive...she checked me out from head to toe with lab work and imaging. I've had several MRI's, ultrasounds, a couple x-rays, and a CT scan (which I regret - too much radiation)

My GP had actually tested me for Lyme - but the Canadian test is so crappy...of course it was negative.
So at about 13 months in, on one of my google sessions...I stumbled across this forum....asked the members if they thought my symptoms could be lyme.
My previous google searches - symptoms mentioned were: fatigue - nope, bulls-eye rash - nope, flu-like symptoms - nope. Didn't have those...so moved on.

The responses to my post on this forum was - yes, get tested through Igenex.
I did that...and it came back positive. (14 months after symptoms started)

They're still working on the lyme disease framework. We've got a couple of advocates who have been to the Legislature a couple of times now. I'm not optimistic it will be a solid plan that will result in better testing, diagnosis and treatment.

Dr. Z may treat a few months....but I doubt much longer than that...I hope she does. She isn't taking new patients though, right?

My LLND treats with antibiotics - two at a time...he has healed many. He is the best we have (Richmond), but I reached a plateau with him...so have had to be creative. I think he will also do IV abx - which would work for you since you're on the Mainland already.

Other BC'ers cross the border and see a LLMD in Seattle.

If I knew then what I know now...I would have spent the money and flown to Washington DC. to Dr. J.
Expensive, yes...but if he got me well sooner...I would be back to work now...lost wages are my biggest financial issue.

You can email me if you're interested in the contact info of my LLND - maybe you already know who I'm talking about.

You know about the Women's Complex Chronic Disease clinic fiasco, right?

I believe Dr. Z was practicing there...and was the third Dr. to resign.


Take whatever treatment you can get - if you can get in to Dr. Z that is...even if it's only a couple of months. That at least will be covered with our Healthcare...and then you can go further afield if you don't want to see Dr. C. in Richmond.

My more troubling symptoms are pain related and other nervous system 'stuff'.

No, the Physiatrist didn't help. He just diagnosed me with frozen shoulder and said my EMG and NCS were good.
Although I asked for my results several months later...and see that my left didn't match my right side...and I've read that is not a good thing. He did offer me a cortisone injection for my frozen shoulder, but I declined. I hate needles and it would have only been a short-term solution anyway.

Sulfatrim - I think that's the same as Bactrim or Septra. An effective antibiotic for lyme and co's.
So, sounds like you herxed on it.

Although I never saw a psychiatrist, I did go to counseling - I would mostly cry when I was there....and she would listen.
Relieved my husband of that duty for a bit.

If you want to email me, I'll give you my reviews of the couple Dr.'s I think you're talking about.

Hi, in response to OP;

I will try to make this as brief as possible. In 2015 I had tinnitus in one ear out of nowhere; a week later I had some kind of crash where I got hit with all sorts of strange physical and neurological symptoms. The symptoms kind of died down and I was maybe 95% until January 2017 where I had another similar crash and had all sorts of crazy symptoms again. Now I probably hover between 85-90% and my symptoms include tinnitus, mild but annoying fatigue, feels like I have water running down my legs, occasional tingling and the feeling of poor circulation (will wake up with numb limbs and experience tingling when sitting/lying in certain positions).

Shellazae said...
I have never even heard of the elispot until just now, it must not be a popular test..?? Sorry you are frustrated, I would be as well.

Armin Labs is being used quite a bit - it's popular with LLND's in Canada and also the European Drs.

Yes it is not great Moonchez. I have had 2 crashes, I think made MUCH worse by my stress/panic at the time as everything was so new.

Now if I feel something coming on I don't really stress about it too much and take magnesium/vitamin d. I remember my vitamin D was incredibly low when I got tested during a crash.

I am currently on abx (3.5months) and to be honest symptoms have gotten worse but I'm not sure if that's a good sign. Am also investigating if there is a link with my root canal and health or if something environmental like household mould is playing a factor.

I will give you the full details of my arminlabs test when I am home if you like. I do remember arminlabs lyme tests coming back all negative but the Australian borrelia test came back positive for IgG but not IgM. I have read somewhere that EBV can cause that but I don't exactly understand all of this.