Friday, May 10, 2013

So You Think You May Have Lyme...Now What?

I have had several people ask me this question. Living in Alabama, it is significantly more difficult to figure out how to approach this topic (compared to states in the Northeast, where you are not labeled as mentally unstable when you bring up the subject of Lyme). However, as with everything else in the world from the latest style trends to medical acceptance...things are slowly trickling down to our state. I have seen a significant change in the past few months alone, so do not let small-minded doctors get you down. Evidence of Alabama starting to 'get it' can be seen on Alabama Lyme Disease's facebook page. The fearless individuals who started the page got the Governor to announce the month of May as Lyme Disease Awareness Month, making it official for our state. They also have achieved non-profit status for the Alabama Lyme Disease Association, which they created.

One of the things that us Lymies MUST DO is protect our doctors. For a while there was somewhat of a witch-hunt for doctors treating Lyme with long-term antibiotics and many Lyme Literate Medical Doctors (LLMDs)--some who were previously world-renowned AIDS researchers, for example--had their medical licenses revoked in their state of practice. So therefore I will never publicly name the doctors in Alabama who are working with my Infectious Disease Specialist in DC to treat me (although I will help you find one if needed in a private message).

Many doctors in Birmingham specifically, but even in other parts of the state, will treat Lyme. They can say they are treating you for multiple auto-immune disorders, or find other creative ways to go out of their way to help you. If you believe you have Lyme and want to be tested, please send me a message and I can point you in the right direction privately. I can also help you find a local doctor to work with your LLMD once you are diagnosed. You can send me a message on this blog's facebook page by clicking here.

I had an hour-long shouting match on the phone with my doctor (an MDVIP doctor...meaning I paid out-of-my pocket for the concierge service). He refused to test me for Lyme, much less send off my blood work to a special Lyme-testing lab. He said "those tests are almost always false positives, and people give up their whole lives because they convince themselves they are sick when it is really all in their heads. People who think they have Lyme are crazy--they are just looking for another way to label their depression. And Lyme doesn't even exist in Alabama." His superior was currently treating my father for Lyme while my dad was on the waiting list for his current LLMD, and it took me reminding him of that and threatening to tell on him to both his superior and MDVIP if he did not test me, along with a slew of other not-so-nice words.

My hope is that you can avoid doing that and going through people questioning your sanity, telling you its simply in your head. Send me a message if you need help. You HAVE to start treatment in a very positive mental state for it to be effective, since treatment is probably the hardest thing you will ever go through. But you will come out on the other side healthy and with a whole new lease on life instead of fighting this alone the rest of your life and risking dying of complications from the disease.

Click here to learn about Lyme disease testing and here to learn six steps on what to do if you think you have Lyme disease (by the way...the second link is from, a great source for all things Lyme.)

1. If you think you have Lyme, you most likely have been through years of treatment for various diseases and aren't getting better. So gather every single test a doctor has ever done on you, especially during the times you felt the most sick. I would suggest faxing in a medical release form, signed, to all of your doctors requesting all lab results be sent to you. You can find sample templates on the Internet that you can tweak for what you need, like this one here. I found doctors responded better when I faxed a form asking them they release my medical records and lab results to me (via mail or fax) and then followed up with a phone call. Otherwise I would have spent days driving around town picking up medical records from all my different doctors, past and present.

From now on, always ask for your lab results on paper to take home with you or to be mailed to you. Create a binder with all of this information. Keeping all of your medical records in one place is a good idea even if you are not chronically ill--we are the ones who should be staying on top of our health, your doctor will not spend as much time looking after your health than you will for yourself. It is a good habit to have.

2. Go get tested. Do not let your doctor talk you into letting a local lab test your blood work or testing it in-house. Your tests must be sent off to special labs that know how to test for Lyme. I would suggest having it sent off to IgeneX. The tests will only be covered by insurance if your test results are positive. Know going into the testing process that you can have Lyme disease even if your test results come back negative (which unfortunately if often).

This is due to where the Lyme is located in your body when you get tested. Lyme can hide out anywhere in your body and is not usually floating around in your blood stream.

DO NOT let your doctor talk you out of getting tested. I have heard several stories from doctors talking their patients out of getting tested and making them feel stupid for wanting to in the first place. If you have to, find another doctor, one that will support you.

3. Set up an appointment with an LLMD (Lyme Literate Medical Doctor) or a LLND (Lyme Literate Naturopathic Doctor). Or pursue a holistic route. This is all up to you. You most likely will be put on a wait-list, but there are things you can do in the meantime to prepare yourself for your visit.

4. Immediately start a gluten-free diet, most lymies have slight to severe gluten intolerances. Especially avoid sugars and wheat. Try to make your lifestyle as healthy as possible. This will save you time on when your doctor will begin treatment--your body has to be in a healthy state to begin treatment. I would also suggest you start a gentle form of yoga (such as restorative yoga) and practice meditation. You need to learn how to calm your body down so that you can handle the treatment.

5. Go to your first appointment with your new Lyme specialist armed with all the information you have collected. Most specialists will diagnose based on ruling out other diseases and looking at all of your symptoms (bring a list of everything you are experiencing, even if it doesn't seem related to Lyme...the symptoms of Lyme are numerous and some of them are pretty write down EVERYTHING physical, emotional, and mental that you are experiencing that is not normal). A positive Lyme test will help, but is not a necessity since they tend to not be 100% reliable.

6. Find a local doctor that is willing to work with your Lyme doctor since you most likely will have to travel for appointments and will need someone near you that can help with the protocol your Lyme Doc gives you.

If you have any questions, just post them in the comment section below and I will do my best to answer them for you or try to find the answer if I do not know it. Send me a private message if you need information on doctors in Alabama that will test you and ones that will work with your Lyme doctor. I have set up a facebook page where you can message privately if you wish (just click here on the link).

Good luck! And remember, you know your body better than anyone else. If you feel you have Lyme, do not become discouraged and give up. Fight for your right to have a healthy body.