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What should I do next.... ?

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Posted 8/2/2014 1:05 PM (GMT 0)
Just found this forum last night; its fantastic.

Here is my question regarding Lyme disease: Should I take this farther?

My Lyme history - based on blood tests I've had taken and saved:

2010 - unnoticed tick bite; obvious bullseye (luckily had a fabulous derm who identified it as Lyme); had first Western Blot; IgM 23 reactive and IgM 41 reactive and IgG 23 and IgG 41 reactive (can they be both IgG reactive and IgM reactive?); took 2 weeks of doxy a few days after bite

2011 - pulled a deer tick off; no symptoms; had Western Blot but no specific bands reported; PCP said I was "negative" for Lyme

2013 - pulled a deer tick off; had Western Blot - IgM 23 reactive and IgG 41 reactive; different PCP said I was "negative" for Lyme

7/21/14 (10 days ago) - pulled a DOG tick off, definite bite. Called my PCP and started 3 days of 100mg doxy starting 12 hours after I pulled the tick off. I went to an infectious disease doctor four days later who is pretty informed about Lyme (and yes, requested all tick borne tests) and left me with a 2week cycle of doxy if the tests came back "positive" before she got back from her vacation. Western Blot came back IgM 23 reactive and IgG 41 reactive. She tried to have the tick tested but the lab reported they couldnt test it without the mouth parts. GIVEN MY HISTORY OF PREVIOUS LYME AND THAT I ALREADY TOOK THE 3-DAY DOSE, I DONT KNOW WHETHER I SHOULD CONTINUE AND TAKE THE 2WEEK DOXY..... ?

I spend weekends on Long Island, NY in any area with deer and deer ticks. I am overly cautious and check myself often, but its hard not to be exposed to ticks and still live in that environment.

FORTUNATELY, I have no real Lyme symptoms aside from chronic symptoms I attribute to other causes, and stress - chronic shoulder pain/diagnosed arthritis; tinnitus (that began after a loud concert one year ago). I try to be very healthy; eat clean; I'm 64.

I clearly have positive reactive tests in my body. Can anyone advise me WHAT I SHOULD DO NEXT???.... and whether I should seek out a LLMD in NYC and proactively seek ongoing monitoring and care from an LLMD? My insurance definitely wouldnt pay; it would be out of pocket. I have to say I like my infectious disease doctor, but is her care enough...... ????

I followed a lot of the threads on this forum for NYC LLMDs. If anyone can private message me a recommended LLMD if I decide to see one, I would appreciate it. Thank you for all replies!
Posted 8/2/2014 1:28 PM (GMT 0)
Yes, from all you wrote regarding your tick history and symptoms (tinnitus, shoulder pain), these could possibly be due to Lyme. Take the antibiotics, keep them in your system and I suggest you continue to seek reliable treatment, especially with an informed LLMD.

It would be a lot better to go this route, get to a reliable, educated LLMD, have them do reliable tests, or they could just start you on a treatment protocol, as testing is so unreliable.

It's so much better to go forward with getting treatment and be wrong, than to not seek additional help, and be wrong. I always say, follow your instincts. What is your gut saying to YOU?

Plus, insurance could pick up the meds, and that's a huge help. I just found that out with my situation, and that's helped me with deciding to get treatment via an LLMD. Invest in your health, it's what matters.

A good thing to remember with Lyme and possible co-infections (babesia, bartenella, etc.) is that every person with L/co is an INDIVIDUAL, and the L/co (symptoms) will be UNIQUE to that person, their personal health situation, and the specific Lyme and/or co-infections. There are some crossover syptoms, but they can present in ways unique to each person.

Hang in there, continue to ask questions and please, don't give up.

And, so happy you found US!! WELCOME!!

Also, I suggest you start a new thread with "Looking for LLMD in NYC", and you'll get more reponses. ; )

And, you'll need to activate your email address, so others can send you names via email. We are not allowed to post dr's names on the site, for their protection.
Posted 8/2/2014 2:05 PM (GMT 0)
Breaking Free -- Thanks so much for your reply. You're correct; I know I shouldnt ignore this.
Posted 8/2/2014 3:20 PM (GMT 0)
Good for YOU!!! We MUST be our own health advocate, at times, warriors, and also have the skin of a rhino! No matter what you hear, if they aren't hearing you and supporting you, then it's time to move on. You can get better. You are doing what is needed to get you there. Bravo!!!!
Posted 8/2/2014 9:27 PM (GMT 0)
Hi Elissa,
Welcome to our community!! I'm so glad that you have found this to be a wonderful place - we kind of like it too! smilewinkgrin

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If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!" (even though you aren't really "new" to Lyme!), as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from.

The new recommendations (just came out) from ILADS (International Lyme and Associate Diseases Society) is that all new tick attachments and suspected Lyme cases be treated with 100- 200 mgs of Doxy, twice a day for 20 days. informahealthcare.com/doi/abs/10.1586/14787210.2014.940900

So unfortunately, your very first treatment was inadequate to rid you of the infection. The other times of possible infection(s) will make this something that now must be treated properly.

Although you told us you spend weekend on Long Island, I'm not sure where you spend the rest of the week, which is likely where you would like to have a LLMD (trained by ILADS). Could you send me an email and I can likely help you find one in whichever area is best? You can send me an email by clicking on my screen name or on the little blue envelope under my name. Please include the area that you hope to find a LLMD.
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