Hi Denikeef!
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.
Yes - most definitely the test could have been wrong. Some states are now passing laws that tell doctors that they must tell patients that a negative Lyme disease tests does NOT rule out Lyme disease!
See, these tests rely on antibodies produced by the immune system in order to get a positive result - this works for most infections, but not all. With Lyme disease, the bacteria can actually lower the immune response, it can change it's outer surface proteins so that the immune system doesn't even recognize it as an invader, and it can also hide in what is known as biofilms (protected colonies of bacteria and viruses) as well as changing into an encysted form so that the abx (antibiotics) can harm it.
Did you have a Western Blot done? If you had any positive bands, or bands marked with "Ind" - you can post those and we can tell you if you have any markers in you blood showing a Lyme infection. You can get your results from whatever doctor did the test.
But even the CDC says that Lyme is diagnosed clinically - with testing hopefully backing it up: " Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly..."
www.cdc.gov/lyme/Unfortunately, those doctors that don't want to treat Lyme will conveniently forget that the CDC even recognizes this.
I think that it's safe to say that most of us have had these issues!! I know that I had Lyme and other infections that usually come with it for over 40 years before I finally found a doctor that was properly trained to not only recognize, but treat these infections!
We can help you find a doctor that has been properly trained to recognize and treat these infections.
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
location.
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]
[email protected] for LLMD referrals and you can go to
tbdalliance.org to learn more about
these infections.
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 system too:
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:
www.ilads.org/lyme/treatment-guideline.php