Day 198: Fibromyalgia or Lyme Disease

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A while back, I read a great article on ZenfullyDelicious--an excellent, positive resource for anyone dealing with chronic illness.  It was about Fibromyalgia and specifically caught my attention because of the title...Fibromyalgia: Is It All in Your Head?

When I read it, I was having a hard day; feeling misunderstood, alone, trying to sort out who I am now inside this world of being sick so much. I was also questioning my Fibromyalgia Diagnosis...something I had just been told I had from the Cardiologist.

As I read through the writer's symptoms..insomnia, brain fog, painful limbs, and crying uncontrollably...it shook me to core. "This sounds like me," I thought. "Is it possible she has Lyme Disease and doesn't know it?" (After all, most Lyme patients don't recall being bitten by a tick or get the tell-tale bulls-eye rash).

Tentatively, I posted a comment on her blog.  I didn't want to lecture (after all, she's been struggling for nine years so who I am to say), but I did want her to be aware: Fibromyalgia is often misdiagnosed for Lyme Disease and vice-versa. They share the same symptoms, have the same waxing and waning cycle, cause the same misery. What if there are a whole slew of Fibro people out there who aren't seeing the right doctors or getting the right tests done?  The possibility just makes me sad nuts.

To help, I've put together a quick list of how my LLMD (Lyme Literate Medical Doctor) determined I have Lyme disease. It is by no means comprehensive, but for anyone questioning their diagnosis or looking for a cause for it, it's a good place to start.

My Lyme/Fibromyalgia Journey...

Before being diagnosed with Chronic Lyme Disease, I was told I have Fibromyalgia.  I also technically had two negative Lyme Disease tests.  A lot of people don't realize (especially non Lyme Literate medical doctors) Lyme tests come up negative for a lot of reasons, but this doesn't mean you DON'T have Lyme Disease (this is why Lyme is a clinical diagnosis). A couple of reasons this happens...
 
1) Lyme tests measure ANTIBODIES...not the actual disease and often the sickest folks don't make antibodies until starting treatment.
2) Sometimes Antibodies cling to viruses...so there are not enough free floating Antibodies available for detection.
3) The lab being used for testing is not sensitive enough or looking at enough strands of the disease to be accurate.

Other reasons can be found HERE.
 
Luckily, by the time I got tested, I was seeing a Lyme Literate Medical Doctor...so he knew what markers point to Lyme...rather than just relying on a CDC positive lab finding (which can be elusive).  Based on that, below are the things I would recommend to any Fibromyalgia patient to rule out Lyme or Tick related Co-infections as the root of their problem.
 
1) Find a LYME LITERATE physician...regular doctors don't understand this disease or know how to treat it.  Note: Run from anybody who tells you Lyme is "easy to treat and difficult to catch." Other phrases that should send chills up your spine: "Lyme doesn't exist in _____ (insert your state here)."  "If you don't remember getting bit by a tick or don't have a rash, you can't have Lyme Disease." "Lyme is easily fixed with a month of Doxycycline or __________." (That only applies when detected early and is only applicable if you don't have co-infections...which is very rare). 

NOTE: You need a Lyme expert here...one who is currently treating and helping Lyme patients...not one who only knows about Lyme from med school (To find out why this is SO important, watch the movie Under Our Skin for more details). 

2) Have them check your C4a levels and CD 57 levels...both are done by blood draw and are helpful indicators that Lyme might be present.  (NOTE: C4a is usually done by Quest. If done by LabCorp, it must use the following code and have directions as noted C4a - LabCorp Code# 857334 Order Directly from National Jewish Medical & Research Center (NJMRC), Denver, CO).

3) Get tested for the following viruses (also a basic blood test): Epstein Barr, Cytomegalovirus, HHV6, Parvo, M. Pnemoniae, C.Pnemoniae.

4) If you've tested negative for Lyme through a regular lab (Labcorp, Quest), retest through IGENEX (the best Lyme Lab in the country) for Lyme Disease.  Also, test for tick-related co-infections:
·  BABESIA
·  EHRLICHIA
·  BARTONELLA
·  RICKETTSIA
 
FYI: The co-infection test is finally the way they detected my disease. I had all of the factors....all of the symptoms...was positive for many of the markers (disrupted c4a and CD 57, high viral loads, positive on a couple of Lyme strands).  When my Ehrlichia co-infection test showed up positive, they knew they had it (thank God I was with a Lyme doctor...my regular doctor would have stopped looking after the first round).
 
Anyway, this is all of the stuff I wish I would have known months ago. If I did, I'm sure I wouldn't be half as sick as I am now.

With love, health, and healing... 

Altered Today: Reaching out to my fibro friends, making a difference

Comments

[annemarie nienstedt]

Thank you for all of that information. I will print it out and bring it to my doctor. I was also wondering..doesn't Lyme cause actual damage to the body? Such as arthritis, or other physical symptoms? I know with Fibro even though you may have pain in your joints, you don't have actual physical symptoms like cartilage loss. I am curious about that.

[Alter Everything]

Hey AnnMarie--That's a great question. Yes, Lyme can cause a lot of physical symptoms...seizures, RA, Osteoporosis, Heart Problems, Dysautonomia, swelling, brain damage, lesions, paralysis, speech trouble, migraines, light/sound sensitivity, chemical sensitivity, etc. Trouble is many people do not get these symptoms until it's too late (depends on complicating factors, what stage you are in, etc).

For a list of lyme stages, go here... http://arthritis.webmd.com/tc/lyme-disease-symptoms

FYI: I don't know how long I have had it. I do know I was bit by something last fall when I got sick and I am already showing lesions in my brain and on some occasions have lost my ability to talk and walk.

As a side note, many Lyme Literate Physicians believe ALS, Parkinsons, Alzheimers, and Multiple Sclerosis are all actually manifestations of late stage (or chronic) Lyme. If they are right (and I honestly believe that they are), it is definitely worth investigating.

[DenverMovingCompany]

Oh my god. Ran across your Blog looking for information, as my girlfriend has fibro. Seeing how she feels some days with just fibromyalgia, my heart goes out to you for having to cope with Lyme in addition.
You have my hopes and prayers.

Take care.

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[Alter Everything]

Thanks so much for commenting....my Denver moving friend. Just curious? Has your girlfriend been checked for Lyme? If not, you may want to consider it. Many Lyme Literate Medical Doctors believe Lyme is the cause of many Fibromyalgia symptoms. I can't say if that's the case or not, but it's definitely worth investigating (the info on how to best do that is above). She may also benefit from a drug called Low Dose Naltrexone.Thanks for loving and supporting your girlfriend so much. She's lucky to have you. Wishing you hope and healing.

[CD133 antibody]

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