How many with FMS and CFS tested infections?

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Date Joined Oct 2008
Total Posts : 222
   Posted 1/8/2009 7:36 AM (GMT -6)   
Viral Bacterial Fungal Parsitic

Post Edited (KeepHope) : 3/8/2009 1:07:27 AM (GMT-7)

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Date Joined Jan 2009
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   Posted 1/8/2009 8:05 AM (GMT -6)   

Good morning Debbie,

I'm a 4 time Lyme survivor.  about 10 years ago I was dx'd as "clear" of the disease after a spinal tap.  Babesia and Bartonella and Mycoplasma were never brought up and, sorry to say, I've never heard of them.  A lot of my Lyme symptoms remained though, but over time they seemed to subside.. until lately.  I'm in the process of being tested again for a variety of things.  The Dr. and I am pretty sure I have fibro .. he's just did the tests to rule out Lupus, MS and so on  and thankfully I don't have any of those ailments.  So it looks like it's fibro. 

I think everyone that has firbromyalgia symptoms should be tested for Lyme.  There are SO many similarities.

I'm so glad you found a good doctor... they're hard to come by.  Wish I could have been more helpful.

Be well and warm hugs..

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Heart Disease, Bi-lateral Carpel Tunnel.  (Still being tested for other disorders/or whatevers).

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Date Joined Aug 2007
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   Posted 1/8/2009 11:07 AM (GMT -6)   
I was tested for lupus, RA and the normal things they rule out but as far as I know that is all I was tested for.
luv and hugs
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Date Joined Apr 2008
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   Posted 1/8/2009 7:13 PM (GMT -6)   
This whole mess started with Lyme. After years of treatment, I recovered much of what I lost. I'm left with chronic pain and other problems that are now called fibromyalgia. I am in much better shape now than when I first got sick but I'm not back to the way I was nor would I consider this normal. Maybe I still have Lyme, who knows.

New Member

Date Joined Jan 2009
Total Posts : 14
   Posted 1/8/2009 7:54 PM (GMT -6)   
I was diagnosed with Lyme first and treated with 21 days of antibiotics. In the mean time I testing for sleep apnea which i just did my titration study for and now I am starting with a rhematologist for the possilble fibro. I have always been healthy and now feel like I am falling apart. I am only 31 and it seems to have started after I had my son almost three years ago. I guess all this time I just atributied it to getting older. Anyway Lyme seems a mystery to me, my rheumo is running a second test because she is "curious" what my levels will be now that treatment is complete. Of course she is running all the other blood tests needed to rule out all other possibilites but states she feels pretty sure it is fibro. I don't think my husband or children will ever completely understand. I am hoping hubby will do the research and see my limitations are real and I am not just lazy. He is wonderful, but sometimes makes little comments about having to do all the work around the house himself, and I already feel guilty I don't need any help:) Thanks for reading, I'm so glad to have an out now and not have to sit and run all this stuff through my own head with no one who REALLY understands.

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Date Joined Apr 2008
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   Posted 1/8/2009 8:16 PM (GMT -6)   
I tested positive for Lyme but I tested negative for co-infections, not that the tests are very reliable. I was treated for many years with various antibiotics, including IV, for Lyme and some other tick diseases. When I stopped improving and became stable, I stopped taking antibiotics. I did not slide backwards at all after 15 years off antibiotics. I no longer herx when I take antibiotics for other infections.

Unfortunately, the cure rate for long term chronic Lyme is not that great. I have met over 300 people with chronic Lyme and less than 10% recovered fully and stayed that way for more than a few years. The town I'm from is a Lyme hot spot. It's so common there, we'd joke that they should put antibiotics in the water. You'd think that would help with a diagnosis but it still took me about a year to get diagnosed and begin treatment.

The Lyme test is not very accurate so even if a fibro person suspects Lyme, they can test negative and be told they don't have it. For many it requires a clinical diagnosis based on symptoms and history but most docs won't diagnose or treat without a positive test.

I'll stop now before I start to get political.

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Date Joined Apr 2004
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   Posted 1/8/2009 11:34 PM (GMT -6)   
Then there is someone like myself who has had symptoms of fibro since I can remember at age 3... Always have had pain, always hurt to walk for a mile, always hurt to run or do physically exerting things. Thought that life was made up of degrees of pain. That sure points to a neurological origin.

Anyway, life is short so I don't dwell on the "why's" anymore. Just keep going.
~ 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

Regular Member

Date Joined Mar 2008
Total Posts : 316
   Posted 1/9/2009 12:25 PM (GMT -6)   


When this whole thing started w/ a strange infection, I tested negative for Lyme.  When I asked to be retested after Fibro started, negative for Lyme.  Third test revealed negative for Lyme also.

I have read a lot of studies that Lyme may be the cause.  But, if you look up other infections / diseases / disorders, they all say the same thing as well. 

While chronic Lyme may certainly be the cause of Fibro-type symptoms in some people, it is by no means the magical answer we have all been searching for (in my mind, at least). 




Fibromyalgia since 2006

"Tragedy is a tool for the living to gain wisdom, not a guide by which to live."
Robert F. Kennedy 


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Date Joined Jul 2007
Total Posts : 1303
   Posted 1/9/2009 1:26 PM (GMT -6)   
I have been tested twice, both negative of course...but Im waiting for the money to be tested with least its more reliable...

So, until then, Im trying not to worry so much about it....

I dont want to think that I do, and then not actually have it... But, Im also stuck because I dont want to think that Im all clear and then turns out that I have it.... its so frustrating, thats why my dads is forking over $200 for me to have the test...
Lyrica and Paxil (both working quite well might I add!)
   "Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
    "Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/9/2009 3:04 PM (GMT -6)   
KeepHope, I believe I was tested for Lyme and also for different types of arthitis' including RA.. and thyroid problems. Didn't have anything and my thyroid was "great" they said.
Never tested for Lupus or anything like that, I dont believe... is that just a simple blood test, Marlee???? You said they usually "rule that out" first but they never said anything to me about being tested for that!
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 1/9/2009 3:36 PM (GMT -6)   
I have never been tested for Lyme, but then again, I don't think my life spent in California, Arizona, Washington Coast, Oregon exactly puts me in a risk catagory for ticks either. I am getting the test for HHV-6 and CMV though next week. I already know I have the EBV anti-bodies. about 60 percent have EBV antibodies by the time they hit 40. 90 percent have CMV antibodies by 40. Most have HHV-6 antibodies by 40. Most people with CFS or Fibro are carrying the cellular colonies of the bacteria they are looking at as the cause.

But does it actualy mean anything? In my opinion it does, but that doesn't really mean anything either for anyone but me.

I know that personaly, every single time I have tossed large amounts of anything with a strong capacity for killing virus's or bacteria it has made me quite sick in Herx reaction symptoms for hours after doing it. I am staggering around for hours feeling like I have the flu, barely able to get off the floor and having a problem breathing. If I do it for weeks, the reactions slowly lessen and I feel better. But it never gets me well. I tossed extremely high doses of Probiotics for IBS problems for weeks and I was very sick every time I did it, but in the end, the IBS symptoms stopped. If I use high doses of Colostrum I get even sicker then the Probiotics made me. I have yet to have the nerve to continue treating with large amounts of Columstrum and see if there is any light at the end of the tunnel on that one.

I guess the bottom line on this post is that regardless of research there is no magic pill yet that one size fits all and for now everyone simply has to treat it the way that feels the best for them. Maybe someday this will go beyond the point of research, test trials and promising results in a bunch of different directions and they will find a definitive underlying cause and definitive curative treatment.

Edit: Mini Rant. Oh, and I might add, a definitive curative treatment that you can actualy go to your Doctor or a Fibro or CFS expert in your town and get the friggin treatment without having to go running off somewhere to some psuedo specialist in another state and hope for the best, or having to go through half the Doctors in town that think your nuts or a hypochondriac first.

Right now though, for me, since I don't have to work today, I am going to go and swallow all the stuff that is going to send me home and put me in bed sick for most of the day, because every time I have done it, I got a couple of days that were better afterward. I am not even going to recommend it to anyone else, because everyone is in the same position on this that I am in this respect. Your going to do what you believe you need to do and that is what you should do. Offering my advice on what anyone else should do would put me in the same position as all the advice we get from people that don't have it and don't understand how it effects us. Since we don't know what we really have ourselves, all we can say is this helps me, or this hurts me and thats about as far as it can go.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 1/9/2009 1:55:28 PM (GMT-7)

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Date Joined Jun 2006
Total Posts : 1156
   Posted 1/9/2009 10:52 PM (GMT -6)   
I never felt that something was attacking my body and I have had fibro symptoms since childhood. I received the standard ANA and other tests and that is it.

I do not have the symptoms of lyme so I do not worry about it. In fact, I know that a lot of scientists are researching why fibro exists and I am no going to lose sleep worrying about the cause.

Now that I have a good medical protocol and can do most of the things I desire, I am happy and a lot less stressed.

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