Welcome to our community!! I'm so glad you found us!!
If you haven't yet, 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!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.
For information on finding an ILADS (International Lyme and Associated Diseases Society) trained Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.
You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well. Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your
You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state)
area". Members can email you about
the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.
You can also email the Tick-Borne Disease Alliance at[url]firstname.lastname@example.org for LLMD referrals and you can go to tbdalliance.org
to learn more about
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
And ILADS has their own referral site that you can check as well:ilads.org/ilads_media/physician-referral/
You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
A word about
the testing - Lyme disease has no test that is accurate enough to rule it out. The tests that we have now are not very sensitive, so a negative test doesn't mean that you don't have the infection. Plus, Lyme keeps the immune system from making antibodies to it, and that's what these tests rely on. Even the PCR testing isn't able to rule out a Lyme infection, because there has to be a very large amount of bacteria in the blood stream at the time of the blood draw for a PCR to work well.
Your experience with steroids is typical of Lyme patients though. There are some that can use a steroid and feel better, but it lowers the immune system, which allows the Lyme bacteria free rein to continue on unobstructed.
From the symptoms you have listed though, I would take a guess that you have Lyme and Bartonella - and when those two combine, they can make having them a lot more painful.
The best thing to start with is reading our "New to Lyme?" thread- it's packed with important information.
Next is to start changing your diet - no sugar, no fast food - you want food that is as minimally processed as possible - and drink 64 ounces of water a day, adding lemon to it. But be sure to rinse your mouth after a glass with lemon because the lemon is hard on the enamel of the teeth.
After that gets started, start looking for a LLMD to be properly evaluated.
Keep asking questions!! That's how we learn about
this stuff and separate fact from fiction.