Were any of you first diagnosed with Fibromyalgia/CFS?

[shells17]

Hi,

I am a 23 year old female who has suffered with a series of medical problems since I had mono at the age of 12. However,  my health seriously began to decline with an onset of a sudden and acute illness in October of 2004. I was severly ill for 11 months - I couldn't do much but sleep all day, I could barely eat, I was weak, my body ached, I had nausea, etc. etc.. During that 11 month period I saw about 30 different doctors and was never diagnosed with anything but a "mono-like" virus. Since then I have never been the same - I have had periods (much shorter this time) where the severe/acute symptoms come back again, and have had numerous infections including costochondritis and diverticulitis and even had to get my gallbladder removed after a sudden onset of pancreatitis. In 2007 I was finally diagnosed with fibromyalgia, chronic fatigue, hashimoto's, IBS, and dormant ebstein-barr and HHV-6. I still struggle with symptoms, random infections, and overall have a difficult time leading a normal life. I have recently read that the standard tests for Lymes are often not sensitive enough to discover the disease, and wonder if I am not really suffering from chronic Lyme.

Have any of you had a similar progression, and/or had been diagnosed with fibro/CFS only to discover later that it was Lymes?

Thanks for you help,
Shelley

[Amyloo]

Oh yes.  For me it was 1:  myofascial pain syndrome, then 2:  Fibro in 05, then 3:  MS in 07.  Only after going back over my labs from my MS diagnosis did I discover a Lyme panel that showed postive for 1 antibody. (For a test ruled postive by the CDC, you must show two out of three.)

This troubled me so I had a proper Lyme test run through a lab that specializes in tick bourne illness.  Bingo; lit up like a Christmas tree.  Am currently on IV abx.  God bless you, if you need more help let me know.  Amy

[gorbybelle]

I was diagnosed with Fibromyalgia then myofascial pain. A cervical MRI scan has shown normal wear and tear in my neck.  I also had costochondritis early on in my illness.  I have had a Lyme [negative ] test sent away by G.P. so probably not very good.  I am seeing a Lyme Doc. next month.  My 'tick bite' was three years ago I only discovered Lyme exists less than a year ago.  My neck/shoulder/chest pains are my worst symptoms which flare-up about every four weeks.  Along with this I get very bloated/fluid retention/fuzzy feeling in my head/congested feeling from waist up/ cracking , grinding noises in my neck also joints especially spine getting very stiff, it goes on ........so I am hoping once I visit Lyme doc. I will know one way or the other .  Best Wishes.

[shells17]

Thank you so much, you guys! It really helps to hear other people's symptoms and the journey that they took to receive their diagnosis. I am looking into seeing a lyme doctor, but I wanted to get some feedback first. I have been tested for Lymes before, but wonder if it was a "false negative" like you had, Amyloo. I feel like I continue to go to different specialists to check things out, and maybe it is time to stop...but I can't live my life struggling to get through each day! I am 23 and want to have kids in a couple of years and want to be a healthy mom!

I am happy that you are on your way to recovery, Amyloo, and I hope that we get our answers, soon, gorbybelle!

God Bless,
Shelley

[patsy10]

Welcome to the lyme forum.  To answer your question, absolutely!.  I was diagnosed with "a non-specific virus" way back when I first got sick.  The other diagnoses I have gotten are FMS, CFS, cervical myelopathy from a herniated disk,  a central nervous disorder but the doctor had "no idea what is was" and some others.  

[Ree4tu]

I was also diagnosed with Fibro  and CFS a year ago. I have been very ill like you with nausea and not being able to eat like you describe.  I did not know much about Lyme Disease until I did research and realized someone with Fibro could not possibly be as ill I was.  I was even in the hospital in Oct.because of being so weak and malnourished.  I had routine lab tests for Lyme which were all negative. A negative test means nothing because they are not reliable. After going through many doctors,  I recently had a CD57 blood test which is an immune system-marker that is low in chronic lyme. My number was 38, which is very low. Yesterday I saw a Lyme Doctor who did the Igenex test, which is the most reliable test for Lyme. They believe I have all the symptoms of Lyme. Lyme Disease can affect every organ in your body, which would explain all your problems.

[Lali418]

Hi!  Welcome aboard!

I was diagnosed with fibro and undiagnosed conective tissue disorder.  Along with Imuno deficiencies. Really specific stuff Huh!  Oh, but my favorite one of all was,
"It is all in your Head!" and you need a Psychiatrist.  I knew it wasn't that, because it was happening to both me and my son.

Any way, My son Gabe was frist tested for lyme in July of last year, and they told him he was negative and that he didn't have Lyme.  But when I actually got him to a Lyme Dr.  He show 6 markers for Lyme, on the Ignex test.

So, I would get tested and see!  The worst part is not having a direction to go in either for treatment or explanations.

And Don't give up!  We are glad you are here!

[PlateletGal]

I definitely believe that everyone who has been diagnosed with fibromyalgia, MS or CFS... should have lyme ruled out first. The preferred test for lyme disease is:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).

http://www.immed.org/illness/clinical_testing.html

One thing that I learned from Dr. Jernigan's book, "Beating Lyme Disease" is that you could have been bitten by an infected tick and not have any lyme symptoms. Then later on in your life, you could be stressed or have an illness and then BAM ! You then have all of the symptoms of lyme disease and then later on.... a lyme diagnosis. I'm hearing that this is what is probably happening in people who have CFS.... that EBV is not the cause, it is the trigger.

I've had lyme testing done (except the CD57 and IGeneX tests) and it was negative. However, I'm on a protocol that many lyme patients are on... so if I have the lyme bacteria, it will be nuked. I did happen to get a tick bite shortly after I started treatment... I know that ticks can not only carry the lyme bacteria, but other bacterias and even viruses as well.

[patsy10]

I would not get anymore testing for lyme done either since your treatment is working.  Doxy is working for me but I plan on switching to one of the Jernigan products in the future.

[Ree4tu]

I read from one of Dr. Nicolson's article that the natural treatments may prevent relapse after a sufficient course of antibiotics.  He was referring to mycoplasma infections, but I would think the same would go for Lyme.

[PlateletGal]

I have a friend who has CFS and is on the Marshall Protocol. After she finishes the MP, she said she was going to try Jernigan's formulas and knock out yeast, parasites, viruses and any other bacterias she may have. I told her that after I finish Jernigan's protocol... I'm going to try the MP once more to make sure that I've killed everything !

I love options ! ; ^ )