Long-Dormant = More Persistent?

Hello everyone!

First of all, thank you for all of your posts, which I've found very helpful over the past few months. This is my first post. I hope it's not too much information!

SYMPTOMS: I've been experiencing Lyme-like symptoms for three and a half months. It began as lower back pain in late January. Since then, I have experienced various kinds of pain in many places of my body (aching, shooting, burning), as well as tingling (hands, face, tongue), twitching (lower extremities, left palm/pinky for a few days), minor heart palpitations (mainly at night), trouble staying asleep, and pink skin blotches that come and go, among other things, such as the appearance of a golf-ball-sized lipoma on my right shoulder, a smaller lipoma on my left pinky finger, a thyroid nodule, several weeks of unexplained swollen lymph nodes in my neck, and a white ulcer behind my bottom front teeth. Overall, my symptoms have been varying levels of distracting and distressing, but I have not experienced muscle weakness, fatigue, or any significant cognitive impairment. I am still able to work and exercise.

HISTORY: Chances of me having been bitten by a tick in the past year or two are next to nil, as I live in NYC and haven't been spending time in places where ticks live. Chances of me having been bitten by a tick as a kid are decent, as I grew up in Vermont and spent a lot of time romping in fields and forests. My rheumatologist said Lyme cannot be dormant and asymptomatic for years and then become symptomatic. I think he's underinformed. A lead Lyme researcher at the Johns Hopkins Lyme Disease Research Center I contacted via email asserted the opposite: it is possible for Lyme bacteria to lay dormant for decades and then begin causing symptoms. I believe this to be true. I'm not sure what could have caused the symptoms to begin when they did, but my immune system was put under some pressure that weekend by three vigorous workouts on Thursday, Friday, and Saturday, drinking Saturday night, and only a few hours of sleep that night before a full day on Sunday of which included lots of walking and standing and being out and about in the cold weather.

DIAGNOSIS: I have had extensive blood work done (hematological, rheumatological, full thyroid panel, flow cytometry), as well as MRIs of my lumbar and cervical spine and x-rays of my cervical spine, left shoulder, left rib (and spine), and lumbar spine. All of my tests have been normal or negative. Two visits to a physical therapist achieved nothing but confusion on the part of the nonetheless very good physical therapist. Five visits to a chiropractor, with massage included, achieved nothing but confusion on the part of the nonetheless very good chiropractor. My one attempt at acupuncture was distinctly unhelpful. I saw Dr. Qingcai Zhang of the Zhang Clinic on May 1. He is not sure I have Lyme. I saw a leading LLMD on May 5. He is not sure I have Lyme. I have had Western blots run in April by Lab Corp and in May by Stony Brook. Both turned up only one reactive band: 66, which is non-specific to Lyme.

TREATMENT: I began a 30-day course of doxycycline (100mg, 3x/day) on May 5. I am also taking Dr. Zhang's Artemesiae, Allicin, AI #3, and Circulation P. I am also taking daily supplements: a probiotic, a multivitamin, and fish oil. To help me sleep, I take a melatonin pill and liposomal melatonin.

FIRST QUESTION(S): The purpose of this post is to poll the community here on your experiences of cases in which someone became symptomatic after a long period of dormancy. Last night, I read this presentation -
https://www.cdc.gov/lyme/pdfs/PersistenceWebinarSlides.pdf - which states that “persistence is the norm in immunocompetent hosts” and that dormant bacteria are “more tolerant of microbiostatic antibiotics” like doxycycline. Based on this, I am concerned that, given my immunocompetency and the likelihood that, if this is Lyme, it has been dormant in me for decades, 30 days of doxycycline, even combined with Dr. Zhang's herbs, won't do much, if anything, to combat this thing. What is your understanding of the difference in outcomes and best treatment, if any, for people with long-dormant Lyme who begin treating it three months into symptoms, compared to people who just acquired Lyme a few months ago? (Should I be pushing for more aggressive treatment? Do I have a higher likelihood of chronic illness?)

SECOND QUESTION: My wife was reactive for band 41 IgM (as well as 58 and 66 IgM, which aren't technically part of the diagnosis criteria) on her Stony Brook Western blot. She is pregnant, and I was worried that I could have transmitted the bacteria to her, and our child could be in danger of getting congenital Lyme. She is asymptomatic. Should we be worried?

Thank you!

Post Edited (ohblymie) : 5/12/2017 2:18:48 PM (GMT-6)

Hi ohblymie -

So glad you found us - welcome to the forum!

If you haven't already, please read the "New to Lyme?" thread at the top of the page - it has invaluable information that will help serve as a foundational starting point to help answer your questions and maybe help you figure out next steps.

Great post - your experience is a little similar to mine. I believe I was infected in NYC (Central Park?) or perhaps somewhere in the NE - I traveled and worked all over New England while living in NYC. But I didn't get diagnosed for 16 yrs and although I had some clues early on that I had Lyme & Co, the majority of the symptoms that eventually hit me hard just a few yrs ago and were specific enough to lead me to a specialist and get diagnosed, were dormant for all of these 16 yrs.

I know other people have had dormant cases - it's not uncommon. Some maybe don't last as long as yours and mine but they do happen. Your immune system can dominate the initial infection and keep it under control as long as your body is healthy and it's not overwhelmed. Until it can't.

As you'll read in that thread I mentioned 30 days of doxy + herbs probably won't be sufficient treatment. Many people have success on all abx or all herbs but most of us on this forum are doing well with a combination. Particularly for people who are considered chronic, or dealing w/ symptoms after initial infection for at least 6 months, it is also common for most of us to be in treatment - one form or another - for months, and a few of us, years.

Treatment can be complex for various reasons - people already be struggling with a health condition or just run down, most tick infections include more than just Lyme (the main tick host is the white footed mouse, not deer, just imagine how much wild rodents are carrying in their bodies), age, lifestyle, etc.

And treatment is hard on the body and the immune system, which is already overwhelmed is necessary to heal well. So there is a lot going on and people often need to move through treatment slowly and methodically, which takes time.

And for some people, a new infection can overwhelm the body just as much. It all depends, we're all different, and if the conventional medical industry realized this and understood it better, there would be less suffering going on.

Hope this is helpful. Do some reading and post any other specific questions you may have - we're here to help!

-p

Hi Pirouette. Thanks for your reply. Yes, I've read the "New to Lyme?" thread. Thanks for sharing your experience. The strange thing for me is I was completely asymptomatic prior to the back pain I started feeling in January. There were no lurking or fleeting pains or other symptoms that came and went for any period prior to that. I was in the best shape of my life (still close to it), at my goal weight, eating well, getting enough sleep. Relaxed and happy. I hadn't seen a doctor in a couple of years prior to getting a physical in January -- the first of many one-time-a-year visits to the doctor, I had hoped! My follow-up with the LLMD is prior to the conclusion of my 30-day course of doxy, so we may choose to transition me directly to something stronger at that point. My gut says that will probably be necessary. I am hoping if I make the right decisions and attack this thing properly the first time, I can return to something like the very happy life I was leading six months ago.

Thanks tickbite666. My ENT put me on 10 days of amoxicillin/clavulanate (875-125) for a suspected bacterial sinus infection in late March, transitioning me seamlessly from the first three days of a five-day Z-Pack. I did not herx at any time during those 13 days, but 13 days may not have been enough time to provoke a reaction, or perhaps I just don't herx, or perhaps the drugs I was taking were not strong enough. I'm hoping to see at least some kind of impact from the doxycycline that can help inform me and the LLMD when it comes time to make a decision about next steps...

Thanks for your reply, Traveler. I have a follow-up with my LLMD scheduled before my 30-day course of doxy is up, so I will have the opportunity to take a more aggressive approach soon. I got blood drawn this week for co-infection testing. I think the most probable co-infection based on my symptoms would be Bartonella (particularly because of the skin stuff I've been experiencing), but the LLMD was unsure even with all of my symptoms and the photos I showed him of my skin symptoms (which tend to be relatively short-lived) that I even have Lyme, much less Lyme and one or more co-infections, so for now I'm doing the doxy and Dr. Zhang's herbs and continuing to try to learn all I can.

My wife has not seen the LLMD because she is completely asymptomatic and there was no indication that she had Lyme until we got her Stony Brook Western blot results today, which showed the three non-specific bands I cited (41, 58, and 66, all of which are non-specific, although, as you noted, 41 is genus-specific). She does not want to take antibiotics during her pregnancy, for obvious reasons. If we pay for iGeneX testing for her and it comes back positive, we may consider an herbal antimicrobial approach.

Hi Pirouette: Thanks again for sharing, and for the ray of hope at the end there. I never had any ups or downs like you did. I have basically been healthy my entire life – like, rare colds, but literally healthy almost every day of my life – until this weird back pain inexplicably crept up on me at the end of January and then slowly developed into this diverse web of bizarre symptoms I've never had before. Lyme seems to be the only halfway reasonable diagnosis, given the reams of stuff I've ruled out, so my LLMD started me on doxy and Dr. Zhang said I should do a diagnostic treatment, but if this is Lyme, and it was dormant, it was wayyyyyy dormant. I just wish I had any idea how that should inform my approach to treatment! For now I guess I just keep taking everything and see what happens...

Still concerned about your wife. There are proven Lyme protocols for pregnant woman. Even if she has no sx and does not want abx because of the baby, she may be short sighted and risks passing her dormant lyme to her child. I do not have enough knowledge or experience in this area to say more. Dr J, the famous children LLMD, shares this pregnancy protocol with all LLMDs and it may be published somewhere online.

In case he questions it (I sure wouldn't, being a mother that somehow escaped that fate for her kids), I would encourage you to read up on what Dr. J (the pediatrician) thoughts and experience with treating pregnant women: /sites.google.com/site/drjoneskids/home

I've gone in and out of remission many times before I was diagnosed, and agree with Pirouette that often we have no clue as to what actually triggered the 'relapsing' part. Sometimes it's just the way the bacteria is, depending on what strain you have.

ohblymie, I believe that my lyme symptoms were being held back by my immune system. I was bit April 29th and saw the bite mark - bull's eye. Nothing happened except that the bite mark did not go away for 3 weeks. Still, nothing happened.

In June I had a huge event at the fire department to coordinate which was stressful. I also went out with girlfriends and over indulged in alcohol. The next morning I had to get up early (I did not feel well, as in hungover) and to go buy items with another girlfriend for the event. She said I complained about a sore neck. I thought I had slept wrong.

That was my first lyme symptom. That sore neck didn't go away and more and more "things" started popping up.

I totally believe that if I had not of taxed my immune system, I could have kept lyme symptoms out of my life. But.... for how long? And would lyme eventually have been so weakened that I would never get symptoms? I don't think so.

I treated lyme with herbs and have been in remission for over a year. I still have lyme in me. It is being controlled now by my immune system. However, I KNOW that if I over indulged, don't get enough sleep, eat crappy food, or STRESS, lyme symptoms will pop up and I will have to treat again (herbal protocol).

I don't think lyme being controlled by the immune system and then appearing, makes it harder to control. I think the quicker you jump on the lyme and fight back, the easier it is to control.

Hi Traveler: Congratulations! So glad your kids are alright in their 30s. (Heh, I was too, until the last couple months of age 33.) Thanks for the tip about saving the blood cord. Oy. Can't believe we're saving blood cords now. Our lives have really changed...

One of the strangest things about my experience so far (knock on wood) has been that my energy levels and cognition have remained fine, so I often feel painfully close to normal. None of my symptoms have been debilitating, only distracting, so as I'm walking outside in NYC, I feel so close to everything, and almost like it's all fine, and I can just breathe a sigh of relief and make plans to grab happy hour drinks with my buddy later to talk it all out and start forgetting it all. And then I remember that I can't do that, and get that wrenching feeling in my gut that says I may never get to do that again, and it all comes crashing down. And yet there I am, waiting for the crosswalk signal to change, looking young and healthy, still in almost full control of my mind and body. The title of a Broadway show comes to mind: Next to Normal. Surreal.

ohblymie said...
Hi Traveler: Congratulations! So glad your kids are alright in their 30s. (Heh, I was too, until the last couple months of age 33.) Thanks for the tip about saving the blood cord. Oy. Can't believe we're saving blood cords now. Our lives have really changed...

I worked for a doctor and his wife. They have 2 girls and they have saved the umbilical stem cells in an umbilical stem cell bank that they pay an annual fee.

Amazing what you can do now.

(I'm hopeful because my symptoms aren't bad so far, and because I have some resources, and because I have a support network of people who love me in my life, and because I'm about as well-informed as I can be, and because I'm already taking action, but mostly I'm hopeful because I have to be hopeful. I see no other option. I just wish I didn't have to do any of this. I wish I didn't know the difference between an immunoglobin G and an immunoglobin M. I wish I wish I wish. But I try to hope instead of wishing. It's more helpful in getting me through the days.)