New to the Forum

Hello! I found this forum roaming the internet and figured it might be a good place to find some answers.

A little about my situation: I was originally diagnosed with Lyme when I was 15 in Cape May County. It took three weeks of symptoms and my mother constantly calling for the nurses at the pediatrician to admit it was probably more than the flu and book me an appointment. I was presenting with extreme fatigue and a very faint bullseye. The blood work was negative, but I was put on antibiotics for a month and the symptoms disappeared.

Fast forward 10 years later. I'm in my first year teaching and coaching and I start getting pain in my lower back. I thought it was sciatica since I've pinched that before, but then I started to get pain/numbness down my left leg. Primary sent me to an orthopedic and a few months of MRIs and PT later and we had ruled out a slipped disc and the pain was only getting worse. During one doctor's appointment, he says "maybe it's an inflammatory illness." I remind him that I had had Lyme when I was a teenager. He was skeptical since I wasn't reporting fatigue. I laughed and told him that I was a first year teacher and coach, what I assumed was 'normal' could very well be fatigue. After consulting with my primary he immediately started me on Doxy. No blood tests. They agreed that if the Doxy worked, then it was Lyme, if it didn't they were back to the drawing board. Thankfully it worked and after a month of the antibiotics I was felling much better. It took a while for my leg to feel 100% better though. They suspected some lasting nerve damage that would take a while to heal.

I hoped that it was over. It was ten years between it coming back, so I figured I might have another 10 years. about four weeks ago, about a week after a had the flu, I started feeling the back pain. I gave it a week to see if I had just tweaked something excising, but then the leg pain started and I noticed the fatigue I had after the flu had yet to recede. The doctor insisted on blood work this time, but it came back negative again. Since I had told them that had happened the first time, they gave me a two week 'trial' of Doxy to see if it would work. I herxed three days later and it lasted for two days. That was new. I'm improving but they switched the type of Doxy I'm on when I called to say it was working and to get the second dose (another two weeks worth).

So now that you've read the longer-than-I-meant-it-to-be description, I have a few questions:
Is switching from Doxy Mono to Doxy Hyclate okay? Is there any difference? Tonight is the first dose of the Hyclate. I'm hoping it won't make me nauseous like the Doxy Mono.
Has anybody heard of Lyme being 'dormant' for 10 years? And then coming back the year after the second influx?
I've heard that Lyme can cause heart problems, specifically heart palpitations. Does anyone know anything about this? If it's true, could the Lyme have something to do with my Supraventricular Tachycardia (heart palpitations is a symptom) diagnosis when I was 16? If so, my Lyme may not have been as dormant as we thought.

Thank you all so much for reading and maybe answering my questions!

Yeah, you need to find a doctor who understands the condition. I'm not sure what you mean by "doxy mono" or hyclate.

"I've heard that Lyme can cause heart problems, specifically heart palpitations. Does anyone know anything about this? If it's true, could the Lyme have something to do with my Supraventricular Tachycardia (heart palpitations is a symptom) diagnosis when I was 16? If so, my Lyme may not have been as dormant as we thought."

YES that definitely can be related.

Welcome.

Doxy in either form is fine, as is Minocycline. All effective. Just check your personal response to the meds and change if you have any bothersome side effects.

Re: dormancy. Lyme disease is caused by a type of bacteria called a spirochete, and as a family these bugs cause what are called "relapsing fevers"- in other words, cyclical symptoms or relief and worsening. A relapse is often preceded by an immune challenge or stressor to the host (you).

Yes, SVT is one possible consequence of Lyme&Co. Borrelia loves to live in the nervous system, and the conduction system of the heart is composed of nerves. Dysregulated heart rate, whether tachy or brady (too fast or too slow) can also be a sign of HPA axis alteration, originating in the brain itself. In either case, it points to a late disseminated stage Lyme/Bart? infection.

Your history sounds like an incompletely treated case of Lyme/Bart that has been occulted for many years. In that case, the care of an LLMD is mandatory the way I see it. Expect a course of antibiotics for at least 3-6 months.

I had the disease, undiagnosed and untreated, for 27 years. I'm three months into comprehensive treatment and have improved greatly!! So don't be downtrodden or worry too much, there's a very good chance the world will begin to look much better after you get treatment.

Thanks everyone for all the great responses!

I've been having a lot of side effects with the doxy hyclate and called my doctor about it. Her reaction was suspicion as to why I was having such bad effects on the hyclate but only slight nausea on the monohydrate. Basically she didn't believe me, claiming that 'they're the same thing' and I shouldn't be having different reactions. I got 20 questions as to why I thought it was the meds. She wanted to take me off all the meds, which wouldn't have helped the lyme since I've only been on for 2 1/2 weeks. I bulked at that and we decided that she'd 'let' me have the doxy monohydrate and if I had reactions on that, then we'd talk about what to do. Needless to say, I'm now looking for a LLMD. I'll be posting a new thread asking for help to find one right now.

Thanks everyone!