Should I still Treat for Lyme and Co-Infections?

I've asked so much this week, I feel bad asking for more thoughts. Just so much going on quickly.

As mentioned in another post, all tests came back negative for Lyme, Babesia, Bartonella. But I know form other recent tests EBV all remain sky high. Been that way for many, many months, if not longer.

Concerns are loss of cartilage in big toes, neck, back. Swelling and mild pain/tightness in right hand and minor same in left hand for three weeks. Balls of feet/big toes have hurt longer. Migraines at night. Carpal tunnel. Back pain . Minor right shoulder pain. Overall feel unwell. Daily afternoon fevers for coming up on 20 months. Taking Plaquenil for two weeks.

All tests for autoimmune come back negative except for complements C3 and C4. That is supposed to indicate autoimmune. Last time it was checked, C4 was low normal. Everything else negative.

I haven't treated for any Lyme for more than a week now. Have no idea what I'm doing now. If Lyme tests had come back positive, at least I'd have something to go by. Waiting on MRI for back.

Dropped the naturopath I saw because she seemed to be all about selling crap. No idea what to do. Have been losing it, mentally, for a while now.

Hi, RW. So sorry you are in this difficult place. Things can feel impossible sometimes, especially when the world seems to be falling apart! I'm glad that you are brainstorming and working on this puzzle. It feels crappy, but one day the right thing will become apparent. As usual, you know a lot already about what you are asking, but here's my thought.

Sure! Take a break from treating Lyme and co-infections for a while. That can be very instructive. Antimicrobial treatment helps some people in a direct, fast, and very noticeable way. That's never been the case for me. Often I find it helpful to stop everything, step back, and see how my body responds to life with fewer substances going into it. Less killing. Less feeling like I'm fighting something.

Have you seen a chiropractor, craniosacral therapist, or physical therapist? As Astroman often reminds us, structural issues can cause way more issues than people think. My partner has extensive symptoms spring from the tiniest compressions of spinal nerves - panic, sleep apnea, dizziness, swelling, weakness, pain, swelling, lack of coordination, headaches, indigestion, urinary frequency, memory issues, etc. And for those of us with extra reactive nerves due to EBV or other infections, the effects can be even more intense. Even if this is not the whole picture for you, structural issues are worth taking care of, just to relieve any contributions they may be making to the bigger picture of dysfunction and inflammation. (My partner also takes curcumin, magnesium, and CBD oil, plus topical CBD balm. Others have mentioned other topical remedies, and a friend just raved about Topricin.)

Good luck, and please do keep us updated.

My EBV results were as follows last fall, which are comparable numbers to other tests since I first got sick in 2016. (All negative in January 2016, all like this by April.)

EBV EARLY ANTIGEN D AB (IGG) 51.40 U/mL (>10.99 = Positive) H
EBV VIRAL CAPSID AG (VCA) AB (IGM) <36.00 U/mL (>43.99=Positive) N
EBV VIRAL CAPSID AG (VCA) AB (IGG) >750.00 U/mL (>21.99=Positive) H
EBV NUCLEAR AG (EBNA) AB (IGG) 118.00 U/mL (>21.99=Positive) H

How do those compare with yours? They seem to alarm my doctors, but I don't have a sense of how common these numbers are, since I read often about most people having some amount of EBV IgG elevation.

I don't do anything specifically for EBV. My doctors recommend monolaurin and Researched Nutritionals PlasMyc transfer factor (which contains EBV antibodies). Have you tried the PlasMyc yet?

Your autoimmune markers look mostly fine, right? While EBV and Lyme can help to set autoimmune conditions in motion, many other things do as well - that's why nearly everyone seems to have at least one autoimmune disease these days! Toxic environment, toxic diet, toxic stress, etc. There are lots of factors in play that can be controlled, even if there are some we can't avoid. I hope that you find some answers soon, and a helpful path!

saraeli - I am not sure which tests compare with yours. I would guess the words "viral caspid" were added in on your results, where mine do not have those words but may be same test.

My last results are from March 30. They are:

EBV Ab VCA, IgM - 73.6 (<36 negative)
EBV Ab VCA, IgG - 130 (<18 negative)
EBV Nuclear Antigen Ab, IgG - 243 (<18 negative)

Test from January had one other:

EBV - Early Antigen Ab, IgG - 16.9 (<9 negative)

I've also had two tests of EBV DNA, which were both negative. I've read about all these and still do not have a clear understanding of them. I have read a positive EBV DNA helps screen for difference types of cancers that might be caused by EBV (that is not to scare anyone as it does not mean someone would develop that).

My EBV tests have been high for at least 18 months to two years and, like you do concern my doctor. I have been taking monolaurin and a smaller amount of Lysine for about six weeks, but my IgM hsa not come down and nuclear antigen has actually gone up. I've tried to get good explanations of exactly what it means. It is good your IgM is negative. But then some say high IgG means infection is still an issue, while doctors have told me it only indicates past infection, which many have. Confusing.

I have no doubt it (EBV) impacts me as I get a mild fever (98.9 - 99.3)late in afternoon now for close to two years. Every once in a while it does not rise, but lately it has been much worse. When I feel it my neck tightens and is often followed by a migraine. It usually last about 2-3 hours, but yesterday it lasted for 12 hours, and I couldn't function. That was worst ever. Do you ever get fevers/migraines?

Yes, autoimmune markers have been normal over and over again, but complements 3C and 4C have been low, though 4C was normal low last check and C3 had gone up some. But something crazy is happening now.

We all know handling stress can help a lot, but I have developed health anxiety. Try and try to not let it get to me, but then worst case scenario goes through my head.

And I bought some Transfer Factor Plasmyc but think the milk product in it is causing a bad reaction, so have stopped for now.

Your point about feeling well enough to take care of your child is well understood. Years ago, when my kids were small, I would do the same thing. It's a catch 22 with that trying to get well - you want to get better for your family but you want your child to feel your love and attention. There is a friend I have made on this site who is in the same boat.

It never occurred to me the Plasmyc might be causing like a herx. Thanks for that perspective. It makes sense. I am going to start back day after tomorrow as my kids are coming over tomorrow for my birthday, and I want to be at at least 35% - 40% when they do. So your point about kids comes in even now when mine are older.

C3 and C4 are different than C3a and C4a. Dcd explained that in another post. It may be one I posted or Astroman's.

Wish it was body temperature fluctuations, but I can feel it about to happen even before temperature goes up. It's so strange and makes it hard to function for a few hours. And it may not be EBV related - could be autoimmune. Like most everything, there is no way to know for sure. I do find it strange doctors don't see the urgency to try and figure it out. Most just look straight through me when I mention it. Next time I see a doctor, I'm going to press it some just to see what mindless answer I might get.

Seeing migraines as three day episodes of Lyme is a good way of seeing migraines. Sorry you have to deal with that - with everything for that matter.