Could your Fibro really be misdiagnosed Lyme?

Hi folks:

Thought I would post here. I was originally dx'd with Fibro in late 2009. I had muscle aches, twitches, pain, brain fog, memory issues, tinnitus, vision issues, etc, et, etc.

I went from doc to doc and was told it was Fibro, Chronic Fatigue and that i should seek a therapist and get on Prozac.

I then stumbled across an LLMD (Lyme Literate MD) trained by ILADS who recognized my symptoms as Lyme. "no way" I said...I've been tested and told I didn't have it. She told me the tests are terrible and miss >70% of the cases. The CDC even admits 9 out of 10 cases go undiagnosed.

She gave me a better test from a better lab (Igenex) and I came back positive for Lyme plus two co-infections...Babesia and BArtonella.

I've been in treatment for 19 months on multiple antibiotics, supplements, and probiotics and am 95% back to my old self. Majority of my symptoms are GONE!!!!

I strongly encourage you to consider Lyme as the root of your Fibro. Fibromyalgia is a real disease..but the cause is unknown. The name Fibro was assigned by the medical community to describe the group of symptoms we have...to which they have no known origin. Well....the lyme symptoms are 100% identical.

If you want to learn more, check out Dr. Burrascano's Lyme guidelines (the Bible of lyme). Here...check out the symptom list. How many do you have? http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


Or check out the documentary "Under Our Skin" (oscar nominated) and see how many lyme patients were originally misdiagnosed with Fibro. Free on Hulu and Netflix. Clips on Youtube. http://www.youtube.com/watch?v=uSsnMQHIJZk

I should mention I have ZERO memory of getting a tick bite...nor did I have a bullseye rash.

Be well.

But that won't stop me!

Thanks Sherrine:

I think this is important to bring up on the Fibro board from time to time as there are likely some (not all, mind you) that could really have lyme and not Fibro.

If only 2% of the people here have Lyme it is worth it for them to investigate / rule it out. If an ILADS trained LLMD rules it out, then you can be assured Fibro is the correct diagnosis.

And yes..the Lyme section of this site is also a good place to check out.

Looks like I need to rule out breast cance before Lyme, as I noticed a new symptom this weekend. Having some breast dscharge. From what I've read, undiagnosed breast cancer can cause a lot of similar symptoms. Wouldn't that be something. Ugh! I'll be calling my gyn first thing in the morning.

Thank you bcb...I appreciate your input.

In the past I have been quick to take what the doctor says and have not taken control of my own health. This experience has made me much more aware and not so quick to just take a pill and not get to the bottom of the problem which has perpetually gotten worse.

However, I also want to be balanced and not think I have everything wrong with me as that is not good mentally. Sometimes it is hard to balance it all...but I am giving it my best!

Happy Sunday!

Christie :)

You know, Debbie, fibromyalgia has many of the same symptoms as a lot of illnesses and your doctor should have ruled out those illnesses before he gave you the diagnosis.  So don't freak out here.

 

In Fibro 101 there is a link called What Else Could It Be.  There is a list of illnesses that need to be ruled out before a diagnosis of fibromyalgia is given.  That's why we have to go through a myriad of tests and for many it has taken several years to be diagnosed.  So, try to relax, Debbie.  Here is a link from WebMD that explains this.

 

http://www.webmd.com/fibromyalgia/features/diagnosing-fibromyalgia-common-misdiagnoses

As I have said before, it is thought that 15-50% of Lyme patients are thought to really have fibromyalgia.  So, this goes both ways.  Here is a link that describes this very well. 

http://www.fibromyalgia-symptoms.org/fibromyalgia_lyme.html

This is the fibromyalgia forum...not the Lyme forum.  For some reason, some people with Lyme disease think everyone has Lyme disease.  This is very upsetting and frustrating to our members.  Bcb, I emailed you back last July about posting on the fibro forum.  I have not changed my mind.  You need to be in the Lyme forum, which you don't seem to go to according to your profile, and be helping newbies over there.  Thank you.

 

I'm locking this thread because this is the fibro forum.  Thanks for understanding.

 

Sherrine