New here -positive test but symptom free - advice

Hi B&T

Welcome to the lyme forum!

You... might be an anomaly around here! Although I don't think your experience is entirely uncommon. Some experts believe (and I agree) that most people in the U.S. have lyme and coinfections (the nasty microbes many of these ticks and other vectors are carrying and infect us with in addition to lyme but are less acknowledged).

From what I've read, the difference between those who become symptomatic, those who don't, and those who get very ill are varied:

- some people are healthier when they are initially infected
- some people have better living habits (diet, stress, health care)
- some people have a genetic disposition to either be able to fight off the microbe more successfully or not react to it
- some people have more functioning or sensitive immune systems that are more reactive, triggering symptoms
- some people are loaded with other infections--either pre-existing or from the infected tick and just can't fight everything off at once

There are likely many other differentiators for why we all react differently to the same microbe.

I suspect I was infected while in Salem, MA on business. I came down with awful flu the whole week I was there--and I never get the flu. After that I had trouble fighting off bronchitis, started having thyroid problems, had some leg and foot pain and cognitive issues but they were all very gradual and disconnected and despite living in an endemic area for lyme (NY) no MD ever thought to check me... I didn't have pronounced lyme & co symptoms until 16 yrs later, when I was prescribed various abx for a sinus infection. Then everything exploded.

You might have reacted to the abx because some people don't tolerate abx well, or the reaction you experienced is what we call a "herx" (short for Herxheimer) reaction. "Sick" doesn't give many clues--if you describe how you felt that would give us more information.

Most people who are lyme literate will suggest that you find a lyme-literate MD (LLMD) or Naturopathic Doctor (ND). ID docs are notoriously un-lyme-friendly. Nearly all follow the IDSA (ID Society of America) Guidelines for lyme, which has been horrifically negligent in effective diagnostics and treatment of lyme and coinfections. Millions of Americans either have no idea they have lyme because of uneducated MDs and poor etiology/testing, are currently misdiagnosed or are being mistreated, and many are suffering needlessly due to these archaic and dangerous guidelines.

SO... if your ID doc is an ILADS member, he/she might be one of the rare enlightened ID LLMDs - but would need much more of a view into her diagnostic and treatment approach, etc to determine that. He/she might interpret the tests you've already had differently, might order new tests. The best test to get done, if you're going to retest, is an IGeneX Western Blot.

Regardless, there is so much you can do to help you and your MD understand better the context for lyme & co and how this helps support test results, clinical presentation and extensive study into symptomatology, etc.)

Before you meet with a lyme specialist - please read the "New to Lyme?" thread at the top of the page. It has invaluable information for those starting out and will be helpful to you in determining next steps.

Also, if you're interested in finding a lyme specialist (recommended), please add a new thread titled "Looking for LLMD in ________" and indicate your home town or nearest metro area.

Here is a good link for symptom lists that can help you organize and provide the info the MD will need:
www.healingwell.com/community/default.aspx?f=30&m=3033860

Hope this is helpful--

-p

Thank you, it is a little helpful. Since coming off the antibiotics both types I am back to feeling well. My symptoms with Doxycycline were, shortness of breath, itching skin, nausea and vomiting. Once changed to Ceftin the symptoms changed to pressure around my neck like someone holding my neck, heartburn (never experienced before), extreme tiredness I slept 10-12 hours a night and then on and off all through the day, a rash on my arm. As soon as I stopped this medication I was normal I could not physically keep taking them I felt so ill. The ID guy is a Lyme specialist but I will also look a the natural root. I already have acupuncture once per week so am very open to that.

Lastly how do I know what type of western blot the doctor already did?

Post Edited (B&T) : 5/31/2016 1:28:42 PM (GMT-6)

Thank you so much, at least I know what I'm working with!!!!! Super helpful.....have a great day :o)

Glad it was helpful - if any other questions come up (which they probably will) - don't hesitate to ask. This forum is a great resource for lymees.

-p

Hi B&T - welcome to our community!

I see Pirouette has given you some good information.

I quickly read through the posts...I have a question.

What was the reason you tested for Lyme, if you had no symptoms?

I would treat....period...don't get as sick as me

Wow, just looked up Erythema migrant rash and I had exactly one of those and then another came, I watched it grow. They are fading at the moment but have stuck around for a couple of weeks.

oh yeah... skip all the tests. LOL
ONLY Borellia can cause that kind of rash. Definitive. You're lucky - many don't produce the rash.

-p

Is the rash still there? If so, take a few pictures of it...it may come in handy at some point..

Holy moly that's a lot of positive bands.
What lab is this?

Just my personal opinion but your symptoms sound like herxing. Either bacteria dying or bring stirred up.

Makes sense. You are symptom free for the most part, then you start treating and all of a sudden several more common lyme symptoms pop up. I don't think it's a coincidence.

Thank you all so much, I am bookmarking all the sites so I can read them all and will find a doctor that can treat me.

Still completely amazed at this with no symptoms and such high readings but such is life!!!