What would you do?

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anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/20/2009 6:36 PM (GMT -7)   
I normally post in the Fibro forum, but was told to ask this question here, I hope no one minds!

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up; I had to go to a lecture by a Lyme literate doctor who said all this stuff about how the CDC's guidelines are outdated and different bands can indicate positivity even when doctor's say it is negative and what-not.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

Oh, it also might be worth mentioning that my Mother has had 2 separate bulls eyes and been treated both times right away with antibiotics, and that my sister was treated for erlychiosis, all within the past few years.

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/20/2009 6:39 PM (GMT -7)   
Oh and a short list of my symptoms include:
- Widesprain pain, both joint and muscle (neck, shoulders, elbows, knees, wrists, fingers, legs and arms in general)
- Muscle twitches everywhere, literally everywhere, feels like my muscles are vibrating and being plucked
- Nerve pain that comes and goes, originally diagnosed as "pre-herpetic nerve pain" which it was most assuredly not
- Heart palpitations
- Night sweats
- Headaches
- Bladder issues

I do not, however, suffer from joint swelling or fevers.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 4/20/2009 6:45 PM (GMT -7)   
What are your bladder issues? I ask because the sweats and bladder/urinary issues can be from babesia, a common co-infection with Lyme. Lyme and fibromyalgia symptoms overlap. In fact, some doctors believe that many fibromyalgia and chronic fatigue cases are actually undiagnosed cases of Lyme.

I have Lyme and babesia. I've never had visible swelling in my joints, and I never have a fever.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/20/2009 7:35 PM (GMT -7)   
It sounds like it could very well be lyme and/or co infections. If you smoke, you should stop to see if that helps you as fibromyalgia can be caused by the nickel in tobacco.

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/20/2009 7:42 PM (GMT -7)   
Thanks...I don't smoke, never have.

Does anyone have advice on how to get better testing for Lyme, or to find a doctor who will pursue the possibility to further then? I'm kind of lost about where to go and what to do. I know of one LLMD in my area only because I interviewed him for an article I'm writing for the newspaper I work at, and I know he does not accept insurance - at all soooooooo I can't afford that...

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/20/2009 7:43 PM (GMT -7)   
Oh and the bladder issues are basically feeling like I have a UTI constantly, and not actually having one. Urgency, burning, pelvic pain...but no UTI.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 4/20/2009 8:11 PM (GMT -7)   
anxietyridden said...
Oh and the bladder issues are basically feeling like I have a UTI constantly, and not actually having one. Urgency, burning, pelvic pain...but no UTI.


That sounds like what I have with babesia. Sometimes I have darker urine too.

You may want to check your insurance. If the LLMD doesn't accept insurance, you can sometimes still submit your bill to your insurance company. You just have to do the paperwork manually instead of having your doctor submit the claim for you.

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 4/20/2009 9:41 PM (GMT -7)   
The fact that you have been led to a place that has been factually informative coupled with your Lyme test is suspicious to the point that you should pursue an appropriate ruling it in or out. This can be done with a Lyme Literate Specialist. If you are comfortable doing so, feel free to email me w/your location and we can search for a credible physician who can help you.

All tests belong to you. All you have to do is sign a release from your doctor and a photocopy of your test is released to you. That way you can see which bands were positive and we can help you know which ones are Borrelia (Lyme) specific and/or which are cross reactive.

The most important fact here, though, is that Lyme is a clinical diagnosis backed up by labs. Labs, while two known independent vector-borne labs in the U.S., are highly credible and far superior than the two tiered tests generally run w/primary care physicians, are not 100% proof of Lyme.

Your symptoms, if Lyme related, are suspicious of co-infections - which need to be differentially diagnosed by the LLMD.

If there is pain in a joint in any part of the body, there is inflammation by default. This is why Fibro patients or CF patients are often treated with steroids. If you have been on steroids at any point, please hold off on further steroid treatment until you have been properly evaluated by a specialist. They are known to cause further dissemination of the spirochete.

It can be confusing; but in the right hands of a physician who is trained to diagnose properly, a solid diagnosis can be made and appropriate treatment offered.

There may be a reason why you were assigned to that topic, after all.
Follow your heart and rule it in or out appropriately so that you do not look back w/regret one day.
Esp. given the fact that you have family members who have been treated. If you reside in the same area as they do, and if your area is endemic for Lyme, the chances of you contracting it are increased, naturally.

Blessings,
Sojourner
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 4/21/2009 7:29 AM (GMT -7)   
Hi anxietyridden,
It definitely sounds like lyme could be a possibility. Have you read the sticky thread (at the top of the page) called "The Basics - Newbies, check this out!"? It will give you a whole lot of information about how to pursue testing, find a doctor, etc. It might be a bit overwhelming, but I guarantee that some of the posts in there will really help answer some of your questions!
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 4/21/2009 2:46 PM (GMT -7)   
Thank you for the responses! I think the first thing I will do is request a copy of the blood test results for myself, so I can look at them, and perhaps consult you guys with the bands. That will make it easier to decide where to go and what to do next. If the rheumatologist had not mentioned the "some bands" that came back, and if I hadn't recently developed the heart palpitations and muscle twitches after 4 years of pain, I might just let it go and assume it is Fibro. I guess it's time to be my own advocate! Thank you for the help, I'm sure I'll be back!
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