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

[Lori707]

Would like to add that I'm currently taking Neurontin (Gagapentin) 3 times daily for the parathesia. Also, my gait is off and I fall a lot.

[Lori707]

About 24 yrs ago I was diagnosed with Lymes. Had the typical bulls eye rash. Doc put me on oral Tetricyline for 2 weeks and felt better. 2-3 yrs later I felt bad again. i.e. stiff neck,knees and fingers hurt. Had Lymes test and it came out negative. My second test came out positive. Was put on IV therapy every day for 3 weeks. Felt better. About 3 years ago I felt fatigued and my scalp was sensitive. Then after many months, my neck started to hurt as well as my joints. Then Bam!!! Within a 2 week period my life changed. I had muscle spasms throughout my body, whole body pins and needles (parathesia) that got worse and felt like terrible stinging and electrical zapping ALL over! All my joints hurt so much that I couldn't even hold a water bottle. Agonizing pain. My skin hurt. I had digestive issues. I was in and out of hospitals and underwent a cardiac catherization. Lost 50lbs without trying and was a stick. I was diagnosed with Rheumatoid Arthitis, Probable Hashimotos Thyroiditis, Fibromyalgia, etc. Docs wanted to put me on Methotrexate, Plaquenil,steroids and Enbrel. I said NOOOOOOOOOOO!!!  I do have a high elevated RA Factor.
I would like to add that for over 2 yrs I have been BEGGING every doctor,and there were many, to test me for Lymes ESPECIALLY since I have a history of having it twice. They ALL said NO!  I just don't understand why. About 3 wks ago I took my husband to my doctors visit and I cried for the Lymes test. Finally someone tested me just to shut me up about it. About 1 1/2 weeks after I took the test, I get a "letter" in the mail from my rheumatologist who ordered the test stating that my test came out POSITIVE!!!!!!!!!!  He couldn't call me? In the envelope was a perscription for doxycliine for 4 weeks. I took the letter and results of my test to my internest, who's sub specialty is Infectious Disease.   He came into the exam room and asked me what's wrong, I showed him the results and reminded him about the past two years that I had been asking for this Lymes test. I was so angry at all my doctors. I would like to add that I had seen several top neurologists and took SO many tests. They also declined to give me a Lymes test.

Yesterday I went to the hospital, per my Infectious Disease doctors orders, and got a Picc Line inserted. I got my first treatment of IV therapy at the hospital and had my second today. It seems that I was under treated for SO many years.

What would have happened to me if I was never tested for Lymes? Why was I getting the NO answer to taking the test?

[JackieCalifornia]

To find an LLMD, google various things like "Lyme MD Washington state" or "Lyme MD [name of city]" and also check websites like 'mdjunction [dot] com' and 'chronic lyme disease [dot] com' (you have to run those words together in the search box; if we run them together here and it looks like a URL, the bot blanks them out).

The ILADS [dot] org website has good information, but it's a scientist/MD-only kind of website for much of the information, tho with your nursing credential you might be able to access more of it than I can.

You may have to travel; it looks like you are half way between Portland and Seattle, but finding a good LLMD sometimes requires a roadtrip.

Let us know how you do ... you might want to start a new message thread when you reply so it pops up as your message and not an old thread.  Hang in there.

[JackieCalifornia]

Oh my.  So very sorry to hear of your experiences.  The worsening symptoms on doxy might be from die off of the bacteria.

Have you been tested for co-infections as well as for Lyme?

[Hope75]

Yes, all of the above!  Possible MS, fibro, chronic fatigue, idiopathic peripheral neuropathy, depression, anxiety disorder, you name it - they diagnosed me with it or tried to.  

[losthope53]

    i am extremely new to this, i am an RN who has been jerked around by my HMO for 21 yrs. i had the typical bullseye rash after a camping trip in 1988 the rash started as 1 spot then within 2 wks. covered me from my neck down. i was dx. with fifth dx. soon had severe H.A. Ct showed (white spots) differential dx. was prior exposure to toxic chemicals vs. radiation exposure. nothing to be done. soon developed horrible muscle spasms in my back and legs. given muscle relaxers. withen the next few yrs. developed electrical sensations in the soles of my feet, felt like i was walking on bare electrical wires. i soon had infrequent bouts of bowel incontinence. all with trips to the Dr. over the years, i have dx. with fibro., C.F.D. ,  arthritis, severe B12 defiency, major depression, multiple chemical sensitivities, allergies to everything, asthma,thrombocytopenia, migraines,  i have numbnes, tingly, sensations in my hands and feet daily now. i drop things i pick up. I am prone to falls, have poor balance. have had bouts of vertigo where i can't get out of bed.  dx. with narcolepsy by my shrink. have been on horrible drugs so i can stay alert enough to continue to work and drive. 2 years ago i was dx. with a "nerve" disconnect. because of my worsening bowel incontinence my HMO gave me the option of getting a colostomy .  i am being tx. by an outside MHP for severe anxiety who suggested i go to a homeopathic MD. since then I have been on doxicycline, have been having worsening sx. I honestly feel like I am dying, I am so tired of whatever this is, that i can't get excited that my quest may soon be over. my lyme dx. test is the first week of jan.  why take the antibiotics before the test?  I am 53 feel like 83, I live on the westcoast. Does anyone out there have any hope for me?  I am looking to join a support group but there arent any in my area.  My family cant be sympathetic to me after 21 yrs. its just another Dx. has anyone been thru anything similar?  Also recently  been to a dermatologist for recurring hives ....... another  dx.  autoimmune  disorder  (MORE PILLS) to my ever growing arsenal.  sign me lost hope.

[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 ! ; ^ )

[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.

[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.

[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.

[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!

[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.

[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.  

[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

[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.

[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