Have Missed Forum, Complex Lyme/EBV Issues

I'm sorry I have not been on the forum for last 10 days or so. Things have gotten crazy, and we all know crazy with Lyme.

Felt so exhausted and fever became more regular, so I went to the urgent care 10 days ago. The doctor insisted I go to ER. At ER, they did a number of tests and scans. The CBC showed low red and white blood cells, which I've had before. Concerning was and is my platelets dropped to an all-time low of 118.

Then CT scan (without contrast because of kidney issues) showed "a large, 3-4 cm mass in colon." This was not I wanted to hear. Within 4 days I was able to get in to see a gastronologist (my nephew is a doctor with the company). Two days later I had a colonoscopy, which was all clear and felt some relief.

Now rheumatologist is concerned my EBV IgM has been high for so long, it is chronic and causing the autoimmune reaction,which could account for the low blood counts. But she also is concerned about B cells becoming T cells, which is not a good thing. Has anyone else been through that concern with EBV?

There seems to be little doubt the EBV is causing a lot of problems and, from what doctor said, could cause some really bad stuff, though she put in in a lot nicer way. I am no longer looking online about it because of stressing myself more. Mentally and physically, I'm at end of rope with this. Can hardly get through days. Have been fatigued for two years or more, but not to this level.

Trying to see what others have experienced with EBV, if it has lasted as long as more than a year and outcome. There are certain tests to determine about B or T cells, but medical world drags it out for so long.

Thanks, and I am not trying to make this a "poor me." Just some ideas as I wait out the process.

So there was nothing in your colon after all?


I don’t know anything about the ebv - but try not to worry about the worst case scenario - look at what happened with the colon - no mass after all.. right?

I know that’s easier said than done - I have had so many false alarms since having lyme ...
I never used to worry about medical stuff like I do now.
Lyme does this - I think because we’ve just about had enough with this long drawn out disease and just can’t “take” anything else on top of it.

I’m sorry you’re going through all this, runningwild...

I'm with you about symptoms Lymie. So many seem to imitate each other. I've had a low-grade fever in the afternoon for more than a year, along with fatigue that can get to the point of putting me out for a few hours. My guess is that is EBV related, but then I also tested positive for Brucella, which can be crossed by Bartonella, which......

How high is your IgM, or has it varied. Do you get severe fatigue or fever? Sorry you are dealing with it, also. Lately, all has gotten worse with me. Fever a little higher and longer in duration, red and white blood cells dropping low, along with platelets. I also know there is autoimmune involved now.

Girlie - You have been through a lot. What you mentioned about how we react to not good news - it's like PTSD. Mind becomes to think the worst, also. I've ordered a Spooky2 Generator X. Have tried so much other I figured it's worth a try, especially with kidneys being a concern.

And yes, the good news about colon was a huge relief. The stress I put myself through for six days not knowing didn't help anything. Trying to figure out a way to control that better. Trying to figure out how to get EBV back in check. There are tests that go deeper than basic blood tests for EBV. Trying to find right doctor to do them.

Wow. I've never had the constant fever, but I do have consistent fatigue. It comes and goes as far as severity. It can get really bad when I'm herxing. The issue is I've tested positive for and have symptoms of Lyme and Babesia. I've never tested positive for Bart, but I get all the symptoms and the classic Bart scratches. Along with EBV who knows what causes the fatigue? Probably everything.

I'm not an expert in comprehending the EBV labs. I know IgM means active infection. My results have been 55(U/ml), 63.5, 54.5, and 152!!. The reference range is <36(u/ml).

What have your results been?

Forgot to mention I get painful lymph nodes which I'm not sure if EBV or Bartonella.

Post Edited (Lymie24) : 10/7/2019 5:30:06 PM (GMT-6)

Also, the conventional thought process in the Lyme community is once Lyme/co-infections are successfully treated EBV is taken care of by the immune system. I'm not sure if that's reality, but that's why I haven't freaked out too bad about the EBV. I used monolaurin, L-Lysine, and valtrex for 6 months at one point, but it didn't make a difference in my numbers.

Despite the EBV I've never had an issue with my Complete Blood Count test so far.

Post Edited (Lymie24) : 10/7/2019 5:41:46 PM (GMT-6)

Interestingly, when I tested 152 was the first time I saw my LLMD in Jan 2017. Therefore treatment must of helped bring my numbers down. I was put on Valtrex at one point. I added monolaurin and L-Lysine myself and did that for about 6 months. My numbers didn't change and I gave up trying to treat EBV.

runningwild - have you or are you currently treating the ebv?
(I quickly read the posts - may have missed it)

What tests did you have done - to determine if it’s active or dormant?

Have you seen this chart?

https://healthtopquestions.com/epstein-barr-virus-ebv-antibody-tests-results-interpretation/

I meant my numbers came down some (but still high) when I started treating Lyme/co-infections. I wish I had more optimsitic news, but I'm not doing well. I became too ill to work and had to give up my career in summer 2018. Currently I'm giving Disulfiram a try. My hope is if I can eventually successfully treat Lyme & Bart (seems like a pipe dream sometimes) my EBV will take care of itself.

My EBV numbers have always been off the charts. I had a recent relapse and have managed to keep it mostly at bay with lauricidin pellets (2 scoops 2x day) and lomatium tincture (2 dropperfulls 2x day). I feel like I have the worst flu when I don't take these, extreme fatigue, fevers, chills, sore throat, swollen lymph nodes, etc. EBV is rough, hang in there!!

Milocat said...
My EBV numbers have always been off the charts. I had a recent relapse and have managed to keep it mostly at bay with lauricidin pellets (2 scoops 2x day) and lomatium tincture (2 dropperfulls 2x day). I feel like I have the worst flu when I don't take these, extreme fatigue, fevers, chills, sore throat, swollen lymph nodes, etc. EBV is rough, hang in there!!

Those also sound like bartonella symptoms. Do you treat bartonella, too?

I didn't know that WBF. Wonder if that can cause fatty marrow? Since it is an infection, would think so.

We will see if the rife machine makes a difference. At a point where I'll try anything that won't have negative impact on organs. That's the catch.

bluelyme - I have everything to learn about rife machine. Did you find it hard to figure out? Seems complex. I joined the Spooky2 Facebook Group to help and am looking at video tutorials, but am confused by it. Praying it can help with bacteria and viruses. I've read it doesn't hep autoimmune.

I'm happy you are doing so much better. And I had not come across "apitherapist" before. I looked it up and sounds interesting. I'm at a point where I'm hardly functional at all. I believe autoimmune is what is doing damage to kidneys and causing other symptoms. That is why I really need to get EBV to back off. As some have written, maybe treating Lyme will help with that aspect.