My Rheumatologist said it's Fibro

  I am so exhausted I have a hard time getting up to shower by the afternoon!! I have to sit on the side of the bed and tell myself I can really do this.(After sleeping 12-14hrs.) I sleep OK at night and I get up in the morning but after I am up a few hours I am wiped out. I have a lot of other symptoms and went to my Rheumatologist who ran a lot of tests. He thought my Systemic Lupus might be back, it has been in remission for 5 yrs.-was active for 15yrs. But it is not back. He did a lot of other tests and they all were good. So I am wondering if I got a false negative on my test for Lyme disease. I never got a tick bite or rash, but I have so many symptoms that are like LD. I am desperate and sick of having no life, I can't make plans and I think my husband is tired of doing things alone. I'm glad our kids are grown. But I do have grandkids that I would love to visit! Do you all have any ideas???  Thanks...SueG

violets- Thanks for your reply, I am going to try finding a LLMD and see what he says. I need to find one that is in my insurance network and around Milw. and thx for clearing up the Fibro symptom vs. disease thing.

 Please tell me how your Lyme D. was diagnosed.

Sueg, if no one responds with the name of an LLMD in your area that is in your insurance group, let me know and I will give you the name of my LLMD. He is by O'Hare airport. It is not that close to you but not that far either. I had a hard time finding an LLMD in the Chicago area, much less one that took insurance. This LLMD doesn't take insurance and his first visit is $500.00, so he is expensive.

As far as Fibro, I too was diagnosed with Fibro by my primary care doctor and prescribed SSRIs (which I never took). I eventually found that I had Lyme and here I am.

By the way, this LLMD is the one that is quoted in the article that circulated here a few days ago about a new Lyme test that is more sensitive and more accurate.

I think most of us have been diagnosed with Fibro at one time or another. When a doc doesn't know, they guess.

Chances are that your Rheumy doesn't want to get involved. Most Rheumys side with the Infectious Disease docs and won't treat past 28 days or so anyway.

Why is it that Doctors don't want to treat Lyme D.? They should want to help their patients, and they would be getting a lot more money from us what with extra appointments and kickbacks from drug companies. What is the big controversy? What is the new more effective Lyme test called? My Rheum. did one Lyme test and said that result was off and then did another (WB) and it was OK.

And 'Traveler', I tried to send you an email but there is a default problem. Can you post your em address?
I have so many questions, as you can see... Thx

I am going to go to my Rheumatologist again or try a new one at a different clinic. I want to make sure my Lupus is gone before I start looking at the Lyme D. dx. I'll let you know...

Not to mention that Lyme often mimics things like Lupus. If you definitely have Lupus instead of Lyme disguised as Lupus, then you will need a doctor who is well versed in both. The lowered immune system that is needed to treat the Lupus is counter-productive to healing from Lyme disease.

I'm so sorry to bring this all down on you! But information is power.

There is only one way from what I know to know if it was Lyme or Lupus - go through Lyme treatments and see if they work. There is no test out there to say that someone doesn't have Lyme, so we are stuck having to just try different things.

We do know that Lyme mimics about 300 different diseases, Lupus is one of them -especially if there is no SLE rash, because then it's just a collection of symptoms that the doc is dealing with and some blood test results that Lyme can also produce.

Many doctors have never been educated about Lyme disease and most have no idea that it can mimic so many different diseases. I had one doctor insist that I had MS - to the point of yelling at me when I refused to start treatment. It took a while, but once I found the right treatment for me, I started healing, and now I have no active symptoms, so I know for a fact that it wasn't MS. It was Lyme, Bartonella, Babesia and more.

The steroid use is unfortunate, but not completely devastating. Steroids lower the immune function, so the Lyme and other infections had nothing holding them back. This only means that you start your healing process further down the ladder than you would have had you never used any steroids. It doesn't mean that you can't/won't heal.

I don't understand the exact function steroids and how they work in the body, but many do feel better while on steroids - but that doesn't mean that it's healthy to use them, especially if you have an infection.

They won't effect the results of igenex or any blot test and to answer one of your questions also, any dr willing to sign off for an Igenex can order it. But keep in mind that if your immune system is really suppressed it is possible that there will be very few antibodies that pick up on the test. In general, Igenex is much more reliable then generic labs though.

I have been checking online for a LLMD or Support Group in the Milwaukee Area and I found one. I called & spoke with the nurse and a Lyme patient herself. She said I could call on Monday and make an
appointment with a Dr. in Milwaukee. And he takes my insurance!

I will need to call for my records to be faxed over to his ofc. from my Rheumy. This is all moving too fast for me.