What would you do?

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anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/20/2009 6:08 PM (GMT -7)   
So, I have had all the pain and symptoms attributed to Fibro for 4.5 - 5 years now. I was only officially diagnosed in November of this past year. During the 4 and a half years I've been tested for Lyme twice - once right in the beginning, and once again recently when my new rheumy ordered blood tests. I had an appointment with the new rheumy on Friday, and she said she would confirm the dx of Fibro, but that I don't have large amounts of sensitivity in the tender points, which she said could be due to the fact that I'm already managing it well.

HOWEVER, while going over my blood test results she said "You did have a few bands come back on the Lyme test, but it's still considered negative by CDC standards." That threw me a little bit, and I didn't pursue it with her. Coincidentally I work for a newspaper and have been assigned a story about Lyme disease for our home and garden issue coming up; I had to go to a lecture by a Lyme literate doctor who said all this stuff about how the CDC's guidelines are outdated and different bands can indicate positivity even when doctor's say it is negative and what-not.

Now I don't know what to think. I know some people have been misdiagnosed with Fibro when it was Lyme, but I also know that Fibro is a very real condition and that my symptoms, for the most part, fit with that diagnosis.

I just wanted some feedback on what you would do in my position - should I asked to see/can I ask to see the Lyme test results to see what bands came back? Would you check things out thoroughly in that realm before "settling" on the Fibro dx?

I'm just not sure... rolleyes

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 4/20/2009 6:22 PM (GMT -7)   
The best lab for diagnosing Lyme is Igenex (I think that's the name) out in California.  Why don't you post this on the HealingWell Lyme forum.  They could give you better information. 
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 4/20/2009 6:22 PM (GMT -7)   
Hey, I just heard a report about this very thing on NPR today! From what I heard, the best answer here would be..keep looking for a doctor who is up to date on Lyme knowledge and get tested again! Apparently this is one of those terribly under-diagnosed illnesses that can really wreak havoc on the system (and act just like Fibro, as you said) but it's very treatable once you get someone to listen to you and take you seriously.

Basically, I would definitely pursue this before you "settle" on a Fibro dx.
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


Lefty85
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 4/20/2009 6:25 PM (GMT -7)   
Hi there!
 
I do know that fibromyalgia and Lyme disease share a lot of similar symptoms.  My best friend has had chronic Lyme Disease since age three, although they didn't diagnose her until she was sixteen.  Since it took them so long, she now suffers chronic pain and damages to her body that are irreversable.  If there's any chance that you have Lyme Disease I would definitely persue looking into it further and seeking treatment.  I would hate to see anyone else suffer like my best friend has for years and years.  There are a lot of people who think that Lyme disease isn't that serious, but if you have it and go for a long time without being treated the concequences can be devastating, and even fatal in some cases.  I am not trying to scare you, just to stress the point that if there's any chance you could have Lyme disease you should seek treatment.  Be careful, because a lot of doctors don't really believe in chronic Lyme disease.  Sometimes you have to be very assertive.  My friend has been through quite a bit trying to find doctors who would actually treat her.  Also, the blood tests for Lyme disease can show false negatives.  It happens a lot.  I would see if there's any way you could be retested.  Plus, my friend with Lyme disease also suffers from fibromyalgia, so it's possible that you also could have both.  I know that you have to be very persistent when it comes to Lyme disease.  I would definitely ask to see your Lyme results, or even be tested again.  I know what Lyme disease can do to people, and if you feel there's any chance you have it, don't settle for another diagnosis until you are absolutely sure. 
 
Take care & Best Wishes
 
SaraBeth
Dx: fibromyalgia, depression, anxiety
meds: diflunisal, pamelor, flexiril, percocet, celexa
 
"In three words I can sum up everything I've learned about life: it goes on." -Robert Frost


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/20/2009 11:13 PM (GMT -7)   
Educate yourself about Lyme Disease. Check out the HealingWell Lyme forum. The symptoms of fibro and Lyme are very similar, you can even have the tender points when you have Lyme.

Fibro has no real treatments and no cure. Lyme can be treated and cured, or at least put in remission, in most people. I'd rather be treated for Lyme I don't have than not treated for Lyme I do have.

pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 4/21/2009 3:27 AM (GMT -7)   
Hey AR... YOU ABSOLUTELY should see another doctor about the Lyme. I agree that its under dx'd. Do some homework and find out who the best Lyme doctor is in your area. Its not something that should just be brushed off. With Lyme you can get false Negs but not false Pos. I have lots of experience in the Lyme area and you don't want to take it lightly. The difference with Lyme and Fibro is Lyme's effects can cause permenate damage and fibro does not.

Let us know how things work out.
Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 4/21/2009 10:10 AM (GMT -7)   
Definitely pursue the Lyme/ coinfection connection.  The CDC criteria were originally set up as a tracking criteria.  As a diagnotic criteria - they miss many cases of Lyme.  As mentioned, testing at Igenex is highly recommended.  They have set up their own criteria - based on testing experience - that includes more Lyme specific bands. 
 
Lyme is primarily a clinical diagnosis with testing playing a supporting role.  The presence of even one of the Igenex Lyme-specific bands could be clinically significant if you have symptoms.  The tests are indirect and measure antibody response rather than testing directly for the bacteria.  There are many things that can suppress this - if your immune system has been under attack for some time, you may have limited ability to produce antibodies.  There is even some evidence that some people have limited response due to genetic reasons.
 
Most LLMD's don't accept insurance.  That is my case too.  I'm four months into treatment now and I think the way to view this is - you can't afford not to.  As my doc says, "Lyme is a smart bug that doesn't want to kill its host."  It can sit there as a drain on your immune system.  If you get stressed or sick with something else in the future, the Lyme can become more active.
 
The bacteria are spirochetes and can basically got where ever they  want to in your body.  Many different body systems can be affected.  It tends to be a deep tissue thing and favoite targets are joints, spinal fluid and it can pass thru the blood-brain barrier.  That's why this disease can have so many symptoms.  Another common spirochete infection is syphilis.  You wouldn't just ignore that and hope for the best, right?  Or hope it just goes away?
 
At least Lyme/coinfections are treatable.  Once it's dessiminated tho, it will likely be a slow process. 
 
I don't want to "over-information" you here, but if you'd like I can post links to Int. Lyme and Assoc. Diseases Society (ILADS) and also to some up-to-date treatment guidelines.
 
We're used to thinking of tests as being definitive and looking at docs as authority figures.  Lyme disease is one of those things where you need to be more informed and be your own advocate.
 
Please post with any questions you may have and we can try to help answer them.
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/21/2009 11:51 AM (GMT -7)   
To Anxietyridden and Rich,

I recently had the same fear, having a NH home in tick country. I went to an infectious disease doc in Tampa who ran the tests and said I definitely do NOT have Lyme. My results were mailed to me and I have one post. band IgG 41. He says it is imposssible to be Lyme but now I am worried. Could the one band be indicative in your opinion Rich? Everything else on the report is negative.

Lord knows you feel like a dog chasing its tail.

thanks guys, Patsie

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 4/21/2009 12:57 PM (GMT -7)   
AND to complicate matters Lyme can bring on Fibro! How's that for a kettle of fish?
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 4/21/2009 1:24 PM (GMT -7)   
Were there any bands reported as Indeterminate?  Was it done by Labcorp. or similar lab?  They do not test all the Lyme specific bands that IgeneX does.  If you have symptoms that get worse you might want to consider having the Western Blot done by Igenex.  Their tests are more sensitive and that's all they do - test for tick borne diseases.
 
I originally had a LabCorp screening test and it picked up a IgM 39 (specific to Lyme) band.  My doc said "That really shouldn't be there".  We retested at Igenex and *chaching* it lit up all kinds of things.
 
Band 41 is a cross-reactive band and so could be there from a number of other things.  It is not a Lyme-specific band.
 
Every day I read this forum and I'm thankful I don't have Fibro.  The Lyme is bad enough shakehead    I sure wouldn't want any of you guys to have Fibro AND Lyme.
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/21/2009 1:51 PM (GMT -7)   
Hi Rich,

Thank you so much. It was done by Lab Corp but my doctor feels certain the one post is something else that ws going on and is very common. Also no reported indeterminate.

Probably mean ole' Fibro all the way and believe me friend this is enough!!!

Patsie

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/21/2009 2:40 PM (GMT -7)   
Thanks very much for the information! I will definitely pursue this. I think my first step is going to be requesting the results of the blood test from my doctor, so I can look at it myself, then decide what to do from there. I will also need to talk to my parents if I want to pursue something, because I would need their financial support. I won't go into how much I make, but it's definitely not enough to even consider paying for Igenex testing out of my own pocket!

Rich, I have the ILADS website and everything, due to the story I am (coincidentally) working on for the paper. Thanks a lot though, I will be sure to come back to you with any questions that I have!

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 4/21/2009 2:53 PM (GMT -7)   
I'm :-)   that you are going to pursue the Lyme connection.  Please keep us posted on how it is going!
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

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