Could your Fibro really be misdiagnosed Lyme?

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bcb1200
Regular Member


Date Joined Nov 2010
Total Posts : 29
   Posted 12/10/2011 10:17 PM (GMT -6)   
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.

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 12/10/2011 10:53 PM (GMT -6)   
Thanks. I am going to look into this, but I'm pretty sure physicians will tell me I'm in denial of FMS & to seek a psychotherapist.
46F, Fibromyalgia, Vitamin D deficiency, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.

I take vitamins, Tramadol for pain, Flexeril as needed.

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 12/10/2011 10:54 PM (GMT -6)   
But that won't stop me!
46F, Fibromyalgia, Vitamin D deficiency, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.

I take vitamins, Tramadol for pain, Flexeril as needed.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15414
   Posted 12/11/2011 7:13 AM (GMT -6)   
We do keep Lyme disease in mind here on this fibro forum.  Both illnesses have many of the same symptoms.  But, you  know, some people that have been diagnosed with Lyme really have fibro, too!  It works both ways.  But I do send people to the Lyme forum here on HealingWell too.
 
I'm sorry you are dealing with Lyme disease and we have a wonderful Lyme forum that will be able to help you. 
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

bcb1200
Regular Member


Date Joined Nov 2010
Total Posts : 29
   Posted 12/11/2011 7:42 AM (GMT -6)   
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.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15414
   Posted 12/11/2011 7:48 AM (GMT -6)   
We do bring it up here...quite frequently.  I think I've mentioned it a couple of times in the past week and have sent people to the Lyme forum.  We also have a link on Fibro 101 called What Else Could It Be that lists Lyme disease as a possible cause of the pain and fatigue.  We do stress on this forum that all these things need to be ruled out before a diagnosis of fibo is given.  I also mention Igenex labs in Palo Alto as a good place to have blood work sent to since they seem to be the most accurate in giving a correct diagnosis of Lyme. 
 
I do thank you, though, for your concern.  It definitely is something that needs to be ruled out.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 12/11/2011 8:05 AM (GMT -6)   
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.
46F, Fibromyalgia, Vitamin D deficiency, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.

I take vitamins, Tramadol for pain, Flexeril as needed.

bcb1200
Regular Member


Date Joined Nov 2010
Total Posts : 29
   Posted 12/11/2011 1:08 PM (GMT -6)   
unexplained milk production is a common lyme symptom in women. Check Burrascano's guide referenced above. It's listed as a symptom.

beachlover89
Regular Member


Date Joined Nov 2011
Total Posts : 265
   Posted 12/11/2011 1:20 PM (GMT -6)   
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 :)
Fibromyalgia 11/11
Raynaud's 11/11
High Blood Pressure 9/11
Migranes 2008
GERD 10/11
Mitro Value Prolapse 1977
Degenerative Disc Disease 2009
Cervical radiculopathy/Herniated Disc 2008
Cervical osteoarthritis 2009
Arthritis 2009
Nerve Damage 2008
Depression/Anxiety 2009

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5614
   Posted 12/11/2011 4:38 PM (GMT -6)   
Good grief! The symptoms look just about identical to me (all 2 zillion of them!) I think I'll mention this to my doctor next time I go in.

Thank you!

Debbie
fibromyalgia, hashimoto's, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15414
   Posted 12/11/2011 5:17 PM (GMT -6)   
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.
 
 
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. 
 
 
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
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
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