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Posted 8/11/2008 8:44 PM (GMT 0)
For the past year - been in and out of work sick as a dog...

First was suspected as Lyme - did 12 weeks of 3 diff ABX

Then after seeing 14 different doctors - now only one thinks

Lyme the rest say "Fibro CFS".

Reading so much by so many knowledgable people on these

forums - How do you know it's this chronic basically

incurable thing and not a still unresolved infection of some type?

Any insights welcome!

Posted 8/11/2008 8:52 PM (GMT 0)
Hi, Enoch!  Gee, I guess we really don't know.  We have gone through all the testing to rule out the other problems that fibromyalgia mimics.  We've had the tender point test and it hurt!  We, hopefully, have doctors we can trust.  I know my doctor does a lot of bloodwork on me every six months.  If there was an infection, it seems to me that it  would show up in the bloodwork by now.  I've had fibro for 21 years.  So, I guess I'm putting my faith in my doctor.  I carefully chose him and I do like him a lot.  Besides, I'd much rather live my life than drive myself crazy looking for something that probably isn't there!

 

I don't believe I've seen you on this forum before.  If I haven't, then welcome!  Be sure to check out the Fibro 101 thread.  It's the second thread at the top of the forum.  There is a link in there called "What Else Could It Be".  These are the things the doctors need to rule out before the definitive diagnosis of fibromyalgia.  Hope this helps you.

 

Sherrine

Posted 8/12/2008 3:43 AM (GMT 0)
HI there! I am wondering if you have copies of your test results from all these doctors you have visited. I have always requested at a minimum blood work results. I keep track of my numbers for ANA, Sed rate, etc- I am at great risk for Lupus and other auto-immune issues, and I am the sole person tracking my results. [We have lived in 5 different places and 3 states in 5 years, so docs are frequently new] If you do have access to those records, chart or graph results over time and from different docs- chart results such as White Blood Count, SED rate, ANA [if it was donem should have been], Red Blood Count, Leukocytes, etc. This may tell you something or show patterns, or give you other info. IF you don't have the results, think about calling the docs and ask for copies of reports. Good luck!
Posted 8/12/2008 1:50 PM (GMT 0)
Hi Enochroot and welcome. Like Sherrine and Sera said you have to take responsibility for your own health to a degree. I also have complete blood work up on regular bases. I do have auto-immune disorder so I see my rheumy once a year to keep an eye out for any other auto-immune problems. I keep a list of things, as they come up, to ask my docs.

 

I think in the beginning I had a lot of those 'what if' questions. Part of it was wishful thinking that maybe I had something that I could take pills for and it would go away. The rest is the fact that there is no blood test that shows fibro.

 

This forum has been a godsend cause I can ask any question about a new symptom and see if others with fibro have it.

 

luv and hugs

Marlee

Posted 8/12/2008 1:56 PM (GMT 0)

Marlee2 said...

 

This forum has been a godsend cause I can ask any question about a new symptom and see if others with fibro have it.

 

Exactly!  I'm still not diagnosed, but more and more I'm thinking that it has to be fibro.  At first I was really scared of ms, but I've learned that fibro can do so many weird things to your body.  Symtoms that I never woudl have linked to fibro from reading articles, I find out many people here have them.  It really puts your mind at ease to know you aren't alone.

I wanted to welcome you too, adn I hope you get some answers soon!

Posted 8/12/2008 9:07 PM (GMT 0)
Thanks to all - I am so discouraged at this point after a year of this.
Started out believing it was Lyme, originally signed up here for the
Lyme boards. There are days when i feel like going back to the
Lyme specialist just to be trying something! I do have all my test over
the past year and do my homework on the internet - none of the
tests ever proved much! Many many repeats, all that basic blood
stuff is always fine and in range, had the Lyme western blot
six times - always negative - except for one band early on
(second test). went to an immunologist who flagged and ANA
"positive" and a responce to Sclera Derma even though i have
no symptoms of it .

My current symptoms are: big time insomnia, muscle tremors
fatigue, brain fog, PAIN...all-over throbbing flu-like ...and my
bowels are in an uproar.

I am runing out of medical leave time - hoping to turn a corner and
at least get back to work!!!

Tried many sleep RX, tried Elavil last night for the first time -
made me zombie-like all day.
Posted 8/12/2008 9:34 PM (GMT 0)

Just to be sure, have you seen a Lyme literate doctor?  Also, has your bloodwork run through Igenex labs in California?  (I think that's the name of them.)  They specialize in Lyme diagnosis and I think their equipment is more specialized than the typical lab.  They can tell you more about that on the Lyme forum.  But, since you are still concerned about it, you might give that a shot first. 

If it turns out you don't have any of the other illnesses that fibro mimics, then you probably do have fibromyalgia.    If you look at the symptoms of fibro link in the Fibro 101 thread, you might just see yourself there.  Also, read the post on this forum.  You may see that many are having the same problems you are having.  I do hope you come to a conclusion soon.  The wondering can drive you bonkers!  shocked   Hope you have a good evening!

 

Sherrrine

Posted 8/12/2008 10:27 PM (GMT 0)
Sherrine - thanks for the input!
Yes, saw a LLMD - member of the ILADS board as
a matter of fact. He is the only doc of the 14 or so
I saw who said Lyme - he was "60% sure"...I did
6 weeks of Doxy, 4 weeks of Zithromax 2 weeks of
ceftin(couldn't take it) I would get better/worse.
As I understand it the longer you are infected the
more likely you will get a positive test back - which
is why i keep retesting~!

So now i am on the fence considering the Fibro/CFS
just as much as Lyme...
Posted 8/12/2008 10:38 PM (GMT 0)
Have you asked on the Lyme forum about how long some of them have been taking medication?  Lyme can be very stubborn.  If you are in line with the members on that forum, then you probably do have fibromyalgia.  And, you could have both!  Lucky you... cry  

Sherrine

Posted 8/13/2008 2:08 AM (GMT 0)

Hi and welcome to the fourm! This is a great place to be... you get fast responses and no one will think your crazy over something. You can ask anything and there is usually someone around that can help in some sort of way.  I have learned that there are many, MANY symptoms of fibro that is not listed on most fibro websites. They give you very vague information. Also, every person with fibro may not have the same symptoms as another person which is why it's so hard to understand. We're all so unique! Aren't we so lucky? eyes    The good news about fibro is: it's not disfiguring, it's not life threatening and you can look forward to having 'good days'.

Good luck,

Chelle

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