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Lyme Disease
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Posted 4/1/2015 2:50 AM (GMT 0)
Hi everyone I'm new to this message board so forgive me if I'm going about this the wrong way , but I basically was curious if anyone diagnosed has similar symptoms to me.

Around the end of last year I had been diagnosed with strep and ever since then have had on going health issues. My symptoms have been all over the place : extreme fatigue out of nowhere, muscle aches/joint pains, heart palpitations, hand/foot pains, persistent swollen glands in the neck, false positive syphillis test, sore throats, the list goes on. Seem to vary day by day week by week. I've seen a bunch of Drs even had a lymph node biopsy ( which does anyone know if lyme would come up in a biopsy?) but no one can give me a diagnosis. The best ive gotten is that I might be developing an auto immune disease. Any thoughts/advice would be so appreciated!
Posted 4/1/2015 5:45 AM (GMT 0)
Welcome to the forum! Have you been tested for Lyme disease? Please read the "new to Lyme" at the top of the page and look at the long list of symptoms. You may have others that don't even think of mentioning. Test for Lyme if you haven't. If the test is negative, it doesn't mean you don't have it. If you are willing to pay out of pocket, the best test for lyme is $200 from Igenex. Your symptoms could be lyme, but no one can tell you for sure. I could be a co-infection or both. Many of us have Lyme and Bartonella. LLMDs are more skilled to treat and recognize lyme and co-infections than regular doctors. Let us know if you need help finding one.

You can read the other member's comments to find a lot of info.
Posted 4/1/2015 6:02 AM (GMT 0)
Hi Jereed!

A Lyme Literate Dr. will be able to diagnose whether or not you have lyme disease based on your history, symptoms. You could schedule an appt. with one...and while waiting for the appointment have a Western Blot test done through Igenex. Then when you go to the appointment, you will have the results of the test.

It needs to be a LLMD, not a regular Dr. or an Infectious Disease Dr.

If you need help finding one in your area, start a new thread titled: "Looking for LLMD in/near _____" and put your city and State in the blank.

You will need to enable your email so forum members can send you names of LLMD's in your area.
Posted 4/1/2015 2:19 PM (GMT 0)
I did get a test through my primary and it came up negative but I still have a suspicion it could be because if how varying the symptoms seem to be and how it's often misdiagnosed
Posted 4/1/2015 2:47 PM (GMT 0)
The regular Lyme test that your primary care doc uses isn't sensitive enough.

I would recommend the $200 IGenex test and book an appt with an LLMD ASAP!

It may not be Lyme, but that is the only way to rule it out.
Posted 4/1/2015 3:07 PM (GMT 0)
Hi Jereed,
Welcome to our community! I'm so glad you found us!

First of all, no, Lyme won't come up on a biopsy like that. Right now the only tests we have aren't terribly reliable. The test your doc most likely did was the ELISA and it only catches about 30% of those that actually have Lyme - or the Western Blot. And as others have said - Igenex is far superior to the labs normally used. But the Western Blot misses around 50% of those that actually have Lyme too, though. This is why you need to see a doctor that is well versed in Lyme - a LLMD (Lyme literate medical doctor) as they will diagnose clinically - as the CDC says it should be done.

It does sound like your issues could be due to Lyme, so I too would greatly encourage you to see a LLMD.

For information on finding a​n 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 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​​

​ 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 Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​
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