New to Lyme, been treated, but still feeling pains

Hi Irishgirl88 - welcome to the forum! Lyme disease is pretty confusing, and unfortunately a controversial illness. A lot of doctors - generally those who don't specialize in it, as well as infectious disease specialists - subscribe to a belief that a short course of antibiotics will cure lyme disease in all cases, while most of us here are painfully aware that this is rarely the case. This is not to scare you - you can and will get better if it still is the lyme affecting you, but sometimes it takes a little extra on the part of the patient to get efficient treatment.

Generally the best thing you can do is see a lyme-literate medical doctor (LLMD), who follows the ILADS (versus IDSA) guidelines for treating lyme disease. They are specially trained and up to date on current treatments and research, and will also test for/treat co-infections, which are very common with lyme disease. Please let us know if you need help locating a LLMD in your area.

Detoxification is also a crucial component to recovering from this thing, which is something a lot of doctors tend not to address. There are some ideas for detoxification strategies in the "new to lyme" thread, as well as plenty of other really useful information put together by our members here. Between the dieoff of the bacteria and the effects of putting all of those antibiotics into our bodies, we usually need to help keep our detoxification pathways going, as a buildup of toxins can often cause many of our symptoms with lyme disease.

It's a good sign that your current doctor is taking the lyme disase seriously - my best advice would be to do a bit of your own research just to get a better sense of what this disease is all about, keep thorough notes on the progression of your symptoms, and keep on looking around here and asking any questions you have. Best of luck!

Hi Irishgirl!
Welcome!! Very few LLMD's take insurance, as they are usually denied payment by them, and it makes it easier to track which doctors are prescribing high dose abx, which many LLMD's have been harassed and a few of our precious LLMD's have even lost their license to practice simply because they insist on using evidence based medicine that says we need that!! Crazy stuff! You can still ask around, as there are a few LLMD's that will work with you so that you can turn in the paperwork to your insurance for reimbursement.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You can also start a new thread with the title something like: "Looking for LLMD in the Killingworth, CT area" , although you will need to enable your email option in your profile so that others can email you with suggestions. For liability issues, and to protect our docs, we don't allow contact info to be shared here on the forum.

You can also send me an email, as I have the name of a LLMD not far from you. I don't know if he takes insurance or not though.

Please do read through our "New to Lyme? Start here!" thread if you haven't already, as there is a lot of important information, helpful links, symptom lists (Lyme rarely travels alone), and even a list of questions to ask your doctor!

Thank you for all this information! I love to be well informed. I am definitely going to research into the Llmd's around here...I visited my current doctor today because my neck wasn't getting any better and I had some numbness on my right cheek. This made her nervous. She started me on another 30 days of doxycycline. And told me once I am covered by the insurance I just applied for which will be in about a week and a half she wants me to go get a spinal tap...SCARY STUFF! She says she hopes the oral antibiotics will be enough but it's never 100% sure that it will. Does the oral doxycycline seem enough to you guys even at the stage I am in right now? It obviously didn't resolve it all the way the first time. I can't believe how uncertain this all is! It's frustrating.

Yes I am only on 100mg twice a day...looks like I need to find a new dr!