Re-Activated EBV with Lyme & Co.

Hey guys! It's been awhile since I've posted... I got married, went on our honeymoon, moved at home and work, attempted to start working full time as an RN again, and had my best friend get married all within 6 months. Needless to say it was exhausting. Worth it though.

Anyway, finally at the point where I can get my treatment regimen back on track for my Lyme & Co. I had an appt with my LLMD 01/13/16 and she did some routine blood work in addition to testing for some co-infections. Well, I just heard from her and she said my EBV is re-activated. I have been feeling significantly worse over the last few weeks and now that I'm putting the 2 together, I definitely feel like I have mono. Any symptoms that come up out of nowhere, new or old, I always contribute to my lyme so don't investigate into other options.

It's always a double edged sword for us Lyme pts (I think anyway)... it was a relief to hear that my EBV is re-activated because it explains why I've been feeling worse for the past few weeks, but at the same time it is infuriating. It makes me feel like all of the time, energy and money I pour into my treatment regimen is a waste! I makes me want to stop taking all of these herbs and supplements all together. I am very overwhelmed right now and every time I see my LLMD or herbalist there is something else to add. I literally take 40 pills twice a day and that's not including the essential oils, tinctures, protein?gut healing shakes and all of my detox regimens.

I originally got sick in 03/21/11 (5 year anniversary coming up fast, it's hard to believe), but did not get my Lyme diagnosis until 12/31/14. I did 4 months of antibiotics (which I started immediately after the diagnosis on 01/01/15) and had to stop because my body couldn't handle them. When I compare myself to that time, it's obvious I'm doing better, because it was a continuous herd reaction for 4 straight months, but when I compare myself to the 3 years of being sick and not knowing I have Lyme disease, I am worse. How is this possible? It makes me want to just stop the treatment and go back to before I got my diagnosis. What's the point if I'm doing worse?

Anyway, I am just reaching out to see if anybody else has been in the same situation with Lyme and reactivated EBV. My LLMD is out of town for the weekend so she won't be able to get back to me until Monday, so any advice or recommendations will be much appreciated!

I am trying to figure out how they know its's active now when it seems like my EBV numbers are high every time they're checked.
Also, does this mean I have active mono again, as in contagious mono? I obviously would like to not pass this on to my husband if possible.
Am I abe to work while the EBV is active (I'm an RN in an outpatient oncology office)?
Any treatment besides the normal mono treatment that has helped you guys? My LLMD wants me to start Lomatium Drops TID. Ring any bells?

Sorry for the rant, but sometimes it feels so much better to rant to people I know will understand on a deeper level.

Look forward to getting some responses and hope everybody is doing awesome!

:)

Congratulations on all that good stuff!! That's part of what makes life so good!!

I agree with CD on the likelihood of your body being overrun with toxins at this point and you likely needing to increase the amount of detoxing you do.

And I'm in the same boat with taking so many things!!! I take well over the amount you do due to having been sick for so long and having to supplement due to intestinal dysfunction - and it gets daunting some days to set up all my pills and supplements and to keep things going - but I'm in this spot because I didn't get treatment soon enough, so I can honestly tell you that not treating is NOT an option. I lived with these infections for 40 years before I found a treatment that worked for me - that's way too much time for those infections to do damage, some of which may be permanent. I'm still working on that one.

As for Lyme reactivating the EBV, yep!! I've been there too. Lots of times. Even now while I'm treating for adrenal and thyroid issues, I can tell when my EBV is flaring yet again, so I know it's time to do more for my immune support, and to restart my EBV treatment (I use L-lysine). Each time my stress levels get a bit too high, the EBV flares, so I've learned to just keep a big bottle of lysine at home.

Considering approximately 97% of the American public has been exposed to EBV, and it's just the immune system that keeps it in check, I would say that if your husband's immune function is good, you have nothing to worry about there. I've had my EBV reactivate many times during my marriage of nearly 16 years now, and my husband never shows signs of it reactivating in him.

But being a nurse at an outpatient oncology clinic is a bit worrisome. It would all depend on how well their immune system is functioning as to whether or not the patients would be at risk.

I came across this article that you may find quite helpful: www.ncbi.nlm.nih.gov/pmc/articles/PMC3021204/

"Latently infected B cells can occasionally be stimulated to reactivate EBV. This produces virus that can reinfect new B cells and epithelial cells, becoming a source of viral transmission. Although much is known about the molecular pathways involved in viral reactivation, what triggers reactivation in vivo is not known precisely. The presumption is that it occurs when latently infected B cells respond to unrelated infections, because B-cell receptor stimulation triggers reactivation in B-cell lines. It is also not known what fraction of EBV-infected cells are in the lytic or latent phase at any time, although a technique using sera from EBV-infected individuals may prove useful in the future."

And this from that same article:
"Aside from oral transmission, EBV has been acquired from blood, indicating that virus present in the peripheral circulation, most likely in memory B cells, is or may become infectious. EBV can also be acquired from transplanted hematopoietic cells or solid organs, and such infections can be life-threatening, especially among recipients who were EBV naïve before transplantation. Several reports of intrauterine transmission of EBV have been published, but none has been substantiated by appropriate viral studies. Scottish investigators believe that EBV may be transmitted via genital secretions during penetrative sexual intercourse. However, their data are retrospective and based on only 2 questionnaires completed 3 years apart. Furthermore, because kissing and sexual intercourse are virtually inseparable, oral transmission certainly cannot be ruled out.:

**I remove all reference numbers so that the type size here isn't changed to different sizes and to make it easier to read for those that have Neuro Lyme.

and you came to the right place to get understanding about these issues!! We all need a rant at least once in a while!!

Thank you all so much for responding with great information, support and congratulations for everything that happened last year! Some days it helps just knowing that I'm not alone in the battle, so again, thank you. This will be another long post because I want to respond to each of you, I hope thats ok with you all.

I know I don't have to justify it here, but I am sorry for the delayed response. I, of course, was stuck in bed all weekend and just didn't have the energy to do much of anything except sleep.

cd3764- I definitely feel worse since I started treatment, which I know is a good sign and what needs to be happening, but I just need it to happen faster. I'm getting so overwhelmed and frustrated, like I said before. I don't know how much longer I can keep up doing all of this on a daily basis. I feel bad complaining so much when I know people have been sick so much longer than me, and some have it so much worse than me, and in no way am I trying to disrespect their fight, but I have zero quality of life right now. My LLMD told me treatment could take 1-1.5 years and I just passed the 1 year mark, and feel worse. I'm 29, this isn't what I imagined my life would be like at 29.
I did recently learn that the bodies of us lyme patients don't have what they need to properly detox on their own, which like you were saying, is exactly what we need. I started a couple new supplements a couple weeks ago that are supposed to help bind up the toxins and excrete them, but so far they're just causing constipation, which seems backwards to me. Currently for detox I do warm lemon and distilled water, bur bur, alka seltzer gold, dry brushing, epsom salt/peroxide/lavender baths. I am always open to new things though if you have any advice, please share!
All of my supplements are like having a second full-time job trying to make sure I take them all, and take them correctly. Not to mention the cost of everything, I can't afford to keep doing what I'm doing.

Traveler- I know that no treatment isn't a great idea, and down the road would only make things worse, but right now that's not enough for me. I was doing so much better before my diagnosis 12/31/14 (originally got sick 03/21/11). I was living with chronic illness, and not 100% back to who I was before I got sick in 2011, but I was feeling much better than I am now. I was able to work 3 10 hour shifts a week, rarely having to call out (which is not the case anymore), and I had as good of a social life as I could want given my situation. Now, everyday is more of a struggle than before and I have absolutely no quality of life. Plus, it's affecting my career that I have worked so hard to obtain the position that I am in. I love being a nurse, but ever since I started treatment for Lyme my brain fog has gone from a little frustrating here and there to debilitating on a daily basis. That is so hard for a nurse. I need my brain working. I know I used to be such a better nurse before getting sick and it kills me that I'm not that anymore. My patients and colleagues don't deserve that.
As for the EBV reactivation, how can you tell when it is your EBV flaring or your Lyme? These days I always think my bad days, or new symptoms are just my lyme acting up, and disregard all other possibilities. Once i got my labs back that showed the reactivation it instantly clicked that I feel like I have mono, text book mono. I will have to get some lysine to see if that helps. I think I have taken it in the past but can't remember what exactly for. The amount of stress going on at work is toxic, so I'm sure that helped aid in the reactivation too. I am going to attempt to go to work tomorrow, but I don't know if I should tell my manager and colleagues that I basically have mono, or if I should just wear a mask and say I have the sniffles. Waiting to hear back tom my LLMD on that. I know the best thing to do is push fluids and rest, but I can't afford to not work.
Thank you so much for the links and advice!

PetaZa- How do you keep track of all of the different supplements and tincture, not to mention, making sure they're being taken correctly? It's so hard for me. I have 2 huge pill organizers that all my supplements don't even fit into, but I'm constantly having to make sure I take certain ones with or without food/water, not with other pills, etc. It's so hard to make work and take my supplements correctly on a daily basis, bt especially while working. Most days I don't even have time to eat lunch let alone keep up with a schedule of supplements and tinctures. I seriously applaud you for being able to do that!

Again, sorry for the long post, but I have so many questions and concerns about all of this that I just need to get it out there into the world to where people understand exactly how I'm feeling. I hope my response isn't too much, I just wanted to make sure you each know how appreciative I am of all the responses.

Side note, I love and trust my LLMD and the entire off of practitioners there. They all work together and talk to each other about shared patents and its absolutely amazing. However, she doesn't do IV antibiotics and I've been doing more research about how that route is most effective for lyme neuro symptoms which are some of my main struggles. We have tried a lot of different things for my brain fog specifically over the last year with no results. Needless to say, I'm trying to decide if I want a second opinion. Have any of you been in this situation?


Seriously, thank you guys again so much. It really means a lot.

hi kkarcher!! congrats on your wedding!! and as everyone else has said, SO sorry for your struggles!

I was sick in the fall of 2013, started treatment in feb 2014 and treated with antibiotics for 8 months. its very possible that you probably got the lyme under control with 4 months of treatment, but you probably stopped treatment too soon. So sorry it was too much for you!

so anyway, i was great for about a year and then started having issues this fall. I kept getting sick, had some symptoms resurface, etc. I did not want to treat. I wanted to try to have my immune system do most of the work. So I started taking immune boosters and tons of epson salt baths and started to gently exercise. I am WAY WAY better now. So if you are not yet ready to treat lyme again, maybe you can slowly strengthen your immune system at least for now? you say you are taking supplements, so maybe you are already doing this, but maybe you need to re-evaluate which ones you are taking? and as everyone else has said, definitely start detoxing!! I swear by alkaselter gold. It works wonders as a detoxing agent. i took 2 tablets twice a day during my entire lyme treatment, and take it now when I feel I need to detox. epson salt baths are great too!!

your question as to whether it is the EBV or lyme - in the end, it really doesn't matter - the symptoms are so similar and since you know you are dealing with both, it is not worth turning your head upside down trying to make a chart of which symptom is due tdnawhat you need to do is get strong again. Your goal is to get the EBV back "underground" so to speak and then face treating lyme when you are ready. the best way to do this is to detox daily, take immune boosters, and SLEEP!! once you feel strong enough, daily exercise is super important. even if its walking 30 min a day or doing very light weight exercises.

good luck and keep us posted!!!

I have reactivated EBV, too. The LTT is much lower now but it used to be high. It sucks, causes swollen lymph nodes and other mono symptoms, which of course overlap with Borrelia/Bartonella symptoms so that we are all left clueless about which is which :P

What that REALLY tells you is that your immune system is not as strong as in the past and you should be sure not to relapse. These viruses are used by some LLMDs more to probe how well our immune system really works. It's not like they can give u an antibiotic that can "cure" EBV, since 90% of the population has it.

Just out of curiosity, what test has your LLMD ordered to come to that conclusion ? Mine uses LTTs.

Im also EBV reactivated alongwith CMV, hsv 1&2, & HHV6. After 1 1/2 years of herbal tinctures, NAC, U.V.B.I.(ultra violet blood irradiation), all sorts of supplements-my Lyme, babs, bart, ehrlic, RMSF,etc all negative...

except I am still positive for mycoplasma pneumonei, and chlamydophilia p, which are likely the ulprits that reactivate the virals????

Im taking a homeopathic product called ITIRES for lymph drainage, and for detox an activated charcoal w/slippery elm bark, chlorella, and redmond clay. Im also taking an antiinflammatory mix of herbs called 'Itis'. Not to forget the 5-mthf, other B-vitamins, and minerals, and a product called 'anxiety control', by metabolic maintenence. Oh also Ibtake maca root for hot flashes, and thyroid meds. This is the first time in almost 2 years my treatment protocol is so light-LOL!

ANYWAY, i just thought Id share-something I mentioned might sound interesting!!!??