My Biggest Mistake

Discussion in 'Fibromyalgia Main Forum' started by Nanie46, Dec 25, 2009.

  1. Nanie46

    Nanie46 Moderator

    My biggest mistake was considering my "Fibromyalgia" as my DIAGNOSIS...the final word... instead of considering it as a set of symptoms....a symptom of a larger picture.

    My biggest mistake was always researching "Fibromyalgia" and "Chronic Fatigue Syndrome".

    My biggest mistake was thinking that a virus had caused my fibromyalgia.

    My biggest mistake was not researching my biggest symptoms.....pain, fatigue, insominia, brain fog.

    When I started considering my fibromyalgia as a symptom, not a diagnosis, I found my answer, and now I am getting better.

  2. Nanie46

    Nanie46 Moderator


    I will try to explain...and I say this to help others, and not to offend anyone...because I, of all people, understand what it is like to have fibromyalgia for 22 years......

    We suffer with pain, fatigue, insomnia and cognitive problems like brain fog and memory loss.

    We search for an answer, often going through much frustration.....and finally our Dr says...I know what you's fibromyalgia!

    We feel relieved to finally have an answer... a diagnosis!

    Finally, we have reached the end of our medical mystery, right?

    Hardly...........what we find out is that fibromyalgia (and chronic fatigue syndrome) is a name given to a "set of symptoms" that has "no known cause".

    We spend months and years searching for information on fibromyalgia and chronic fatigue syndrome looking for some clue that will help us recover.

    We read all the latest books and research abstracts. We exchange information with lots of other people who have the same diagnosis.

    Sometimes we take antiviral meds hoping for a cure because there is alot of discussion about a viral cause.

    "Fibromyalgia" means muscle and fibrous tissue pain.

    No matter how you look at it, it is really a set of symptoms.

    Forget for just one minute that it has a name...because it doesn't matter what you call it, the symptoms are still the same.

    So if you just look at all of your symptoms, and then say, "What could have caused this mysterious set of symptoms?"

    In all likelihood the cause is infectious.

    Many times it all started with a flu-like illness after which we never felt the same.

    Sometimes it begins after a stressful event, like a car accident, surgery, or a death in the family.

    So what infectious agent could possibly be controlled by our immune system until a really stressful event triggered it's activation into a full-blown infection?

    What infectious agent mimics a viral infection beautifully....fooling us into thinking we had the flu?

    What infectious agent can be passed from mother to fetus, to a breastfeeding baby, and sexually transmitted?

    What infectious agent sometimes infects whole families/generations, not only because they live in the same areas, but because it can easily be transmitted to a fetus/baby/sexual partner?

    What infectious agent can present with symptoms that vary greatly from one person to another?

    What infectious agent infects the neurological system causing nerve pain (helped by drugs like lyrica), cognitive problems, muscle twitching, headaches, insomnia, etc?

    What infectious agent causes sets of symptoms that are diagnosed as fibromyalgia, chronic fatigue syndrome, MS, Parkinson's, Lupus, Alzheimer's, depression, bipolar disorder, ADHD and Autism?

    What infectious agent is now known as the "New Great Imitator" because it really can cause all of those problems?

    The answer......the most complex bacteria identified to date......Borrelia Burgdorferi.

    Borrelia burgdorferi is also commonly associated with other infections like babesia, bartonella and ehrlichia(HGE and HME), which complicate the clinical picture and create differences in symptoms from person to person.

    For instance, if you have occasional swollen glands and addition to borrellia...think bartonella.

    If you have night sweats or air hunger or fatigue that does not get better with addition to borrelia ...think babesia.

    Some people have several of these infections making them extremely ill, sometimes disabled.

    So......I hope this helps someone.........

    When I stopped looking for information on fibromyalgia, and just looked for possible causes of my opened up a new door.

    I did research and found out that I had a chronic borrelia burgdorferi infection that my Doctors did not recognize.

    In my research I discovered that 99% of Dr's do not know how to recognize, diagnose or treat a chronic borrelia burdorferi infection.

    So, I found a Dr who was Lyme literate and now I am getting better.

    Here's some good links/info:

    [This Message was Edited on 12/26/2009]
  3. simonedb

    simonedb Member

    I understand wht you are saying, think its good idea to keep searching, not everyone has same thing, but xmrv shows some people do have something in common, but that could just be the granddaddy of everything else or one other small thing among many things someone could have.
    what tests helped you? isnt the issue that tests for those infections dont always work, tht its hard to detect?
    lately I have been pondering the air hunger part and heart and neck connection after reading about dr zamboni and ms. i just don't understand why in this day and age so many docs and patients have hard time figuring out these health issues, it doesnt feel like it should be so complicated. but I am a 20 year example of it.
  4. Nanie46

    Nanie46 Moderator


    The thing that helped me most was research on, etc.

    I also had a western blot through Igenex lab in CA which fortunately did give me some important clues, even though my Dr told me it was negative and I did not have lyme.

    I got a copy of my results.

    Even though the results were officially CDC and Igenex negative, I had read Dr B's western blot info on page 7 in this paper...

    and this western blot info from Dr C....

    I knew that I had some lyme specific bands that were positive and indeterminite...which were significant.

    It is common though, for people with lyme to have negative tests and to have no lyme specific bands show up.....for many reasons.

    Testing is poor. It is an antibody test and you may no longer be making antibodies to the bacteria. There are also species of lyme that they don't even have tests for.

    Then there is the fact that Igenex is the only lab that tests for all bands. Other labs don't even test for many of the lyme specific stupid is that?

    Igenex tests for 10 IgG and 10 IgM bands. Other labs test for 10 IgG and 3 IgM bands...leaving out those very important lyme specific bands!

    Then, on top of that the CDC requires that you have 5 out of 10 positive IgG bands present or 2 out of 3 IgM positive bands present before they will consider that you have a positive result.

    Then....if you have a positive IgG result, your dr may say, that is just an old infection, not an active no need to worry.

    or, if you have a positive IgM result your Dr might say, that's did not just have a tick bite and bullseye rash recently, so you don't have lyme!

    or....your Dr may say...don't worry, I'm sure it's a false positive!

    Unfortunately, like I said before, Dr's are not lyme literate.

    Lyme is a clinical diagnosis....based on history and symptoms.

    It should NEVER be ruled out based on a negative lab test....and this is a mistake that Dr's make everyday.

    There are many, many names of people on a list on the Lyme board...people who were first diagnosed with fibromyalgia and/or chronic fatigue syndrome....who later discovered they had chronic lyme.

    There are many, many people on who have the same story....many wasted years following only the fibromyalgia, chronic fatigue, MS ,etc diagnosis......who were lucky enough to figure out that a complex bacteria had caused their problems....often along with other infections.

    Until I researched Lyme, I had no idea how misunderstood it is. Even Dr's at famous institutions and teaching hospitals who claim to be lyme literate, really know nothing about chronic lyme.

    It's so sad, and such a travesty for thousands of suffering people.

    I did lots of research, listened to my instincts, had an Igenex western blot (test #188 and #189) and found a lyme literate MD to evaluate me.

    He spent 6 hours with me doing the most thorough exam and testing I ever had.

    He confirmed my suspicions.

    Please go to pages 22-27 of this paper to read about coinfections like babesia and bartonella.......pages 23, 24, 26, 27 in particular have info about air hunger/babesia.

    pages 9-11 has a complete symptom list............

    Here is a link to Dr S's Babesia update....

  5. Nanie46

    Nanie46 Moderator

  6. ladybugmandy

    ladybugmandy Member

    a virus did cause your fibromyalgia.
  7. Nanie46

    Nanie46 Moderator

    No, I took antivirals with no improvement (except from food elimination)before I knew I had lyme.

    The lyme bacteria, when it infects a person can cause a severe sore throat and flu-like illness....and now that I know I have lyme, it all makes sense...the events that happened when I became ill.

    It was a bacteria....borrelia burgdorferi.

    Fibromyalgia is a common lyme symptom.[This Message was Edited on 12/27/2009]
  8. simonedb

    simonedb Member

    so what did you do and how much better are you?

    argh, it is too overwhelming to me to try to keep all tests and theories and approaches straight, i wish i knew of one clinic or doc that would aggressively rule stuff out like that. do the f and f clinics do that? i also want to have my veins in neck checked out per zamboni's ms theory cus i definitely hve issues with neck and o2 hunger and heart pumping.
  9. fight4acure

    fight4acure Member

    I can feel your pain, literally! I know it is so frustrating to hear so many different things at once.

    Doctors, nor researchers, can figure things out, and if they do, they have no treatment. Hang in there Hon... just last year they still thought CFS was psychosomatic.

    We're going to get a lot more hypotheses thrown at us by various doctors and researchers.

    They will be creating better tests with viruses, as well as with Lyme's disease. Some research will be found invalid, while others research will thrive and show truths.

    While it may look like we're climbing Mt. Everest, just know we are not at the bottom, but several feet up compared to where we were last year.

    Fight :)
  10. Nanie46

    Nanie46 Moderator


    Thank you for your comments and perspective.

    I am glad that what you are doing has helped you.
  11. Nanie46

    Nanie46 Moderator


    I am being treated by a Lyme literate MD who follows ILADS guidelines.

    I have been treating for 10 1/2 months so far.

    My sleep and fatigue are significantly better. My hot flashes are much better too.

    My excrutiating neck/head/shoulder pain and stiffness which felt like 3 horrible vice grips around the back of my lower skull, neck and shoulders has improved at least 50% in the last 10 weeks. This alone seems like a miracle to me. This was the kind of pain that you wonder how you will live with this the rest of your life.

    I am on long term combination antibiotic therapy. My LLMD also addresses hormones, so I had testing and he prescribes bioidenticals to replace everything that was lacking from 22 years of illness.

    I avoid sugar/gluten/dairy/soy/processed foods, but I have been doing that for over 2 years.

    I have been exercising at Curves for almost 5 years.

    I take supplements that my LLMD recommends, with the most important ones being high quality probiotics, Vit D3 and fish oil...among others.

    I have never gone to a F and F clinic, but I have read of others who have, who thought they had lyme ruled out by knowledgeable Dr's there, only to later find out that they really did have lyme after all.
  12. Nanie46

    Nanie46 Moderator


    Thanks for your comments fight!

    I wanted to pass along this article written by a very intelligent Dr.

    It addresses the need for clinical judgement in the diagnosis and treatment of lyme.

    Almost all Dr's mistakenly rule out lyme by just a negative lab test, leaving many, many people to suffer forever.....
  13. slammed

    slammed Member

    Lyme isn't contagious, as best i know.(Is it?) but, virus(es) are. people aren't going around unknowingly spreading Lyme disease to any casual contact who's in the wrong place/wrong time. Is this correct? Nanie, you say "bacterial", so maybe i am not correct. what's your info re this point?

    i'm no expert on this stuff, but i do know that the "xmrv" that is the main suspected culprit in the CFS disease, is contagious. _it is probably more contagious than the study is attributing to it, imo._

    and that's why so many people are Sick : it is contagious.

    Nanie46, thank God you are finding an answer that is helping you. i hope all of us will,too.
    best wishes, slammed
    [This Message was Edited on 12/28/2009]
  14. fight4acure

    fight4acure Member

    Thanks! I'll check it out.

    Fight :)
  15. Nanie46

    Nanie46 Moderator

    Lyme is not contagious like the common cold virus, for example.

    Lyme is a bacterial spirochete similar to syphillis, only much more complex.

    Lyme can be transmitted to another person through sexual contact, from mother to fetus through the placenta, and through breastfeeding.

    My point is that some families that have several people with FMS symptoms think that FMS must be hereditary.

    In reality it is very possible that those family members all have chronic borrelia burgdorferi infections (and possibly other common coinfections).

    Some of those family members could have contracted lyme congenitally, sexually or through a tick bite because of the time they spend in the outdoors or with pets.

    Since people with Lyme can present with symptoms that look like MS, Chronic fatigue syndrome, lupus, Parkinson's, etc, often Dr's do not recognize that these people may have the same chronic infection.

    Ticks can be brought in the house by pets, on Christmas trees, and on clothing.

    Nymph ticks are so small that you would probably never see them.

    People spend time in the outdoors all the time. There is no immunity to lyme. You can get rebitten an infinite amount of times.... each time can lead to an increase in symptoms/illness.

    Some experts believe that lyme can also be transmitted by biting flies, mosquitoes, and fleas.

    I live in PA where there are many mice, deer and grassy/wooded areas, yet I never remember hearing any discussion about ticks or lyme before I was diagnosed.

    Most people have heard more discussion about West Nile Virus and mosquitoes, than lyme.

    Have you ever had a mosquito bite? Most likely you have. Many people have had a tick bite and did not even know it...including me.

    Thank you for your good wishes.
  16. Nanie46

    Nanie46 Moderator

    You are welcome!

    All the best to you!
  17. Nanie46

    Nanie46 Moderator

    Hi everyone,

    For anyone interested, here is the link to a site created by a physician who has chronic lyme.

    His site is called Life Path Guide.

    On this site he has links to 5 articles that he wrote for his local newspaper.

    They are very informative and expertly written. He explains some of the problems with testing, the complexity of the lyme bacterium, treatment, and the phenomenal complexity of this illness.

    They are worth reading....the first article is more of an introduction. The other ones are more interesting, so keep going past he first one.

  18. hi all,
    nannie46,i will agree with your post.

    i think we get this fibro/CFS from a virus,mine could have been after having got glandular fever from my young son,who got it from his nursery.

    i believe i have inherited lung problems from my father and his mother (asthma).i feature my dads side of the family,and my sibblings feature mums side..they dont have asthma or psoriasis,which comes from my dads side.

    my daughter also has asthma and son has asthma not psoriasis.

    so allergies were probably with me many years ago,but i was too busy being a mum to notice what my body was telling me.

    mum had migraine and nasal passage allergies too.

    there is a problem with veins in my mums side of the family,but im not thinking about that,i live for today.

    we do need to keep our weight down,and we do need to keep chorestrol down too.

    we do need to watch our posture,and we do need to do gentle yoga to help our food to move through the degestive tract as we get doesnt back up then.

    my biggest problem is weight that ive gained from my medication,i seem to get problems with breathing due to the weight gain.but if i dont take the medication (1 and a half tablets of nortriptyline 25 mg),then my job will make my body lose so much weight that i become sunk in at my face, and too skinny.

    im eating raw garlic with my evening meal,and have 1 bottle of actmel first thing in the morning, to try and boost my immune system.

    i have managed to get over a bout of flu,without medical intervention,so i feel blessed.

    take care all,fran.
  19. munch1958

    munch1958 Member

    I wish I had thought of writing this post that way that Nanie46 did because this was also my biggest mistake too.

    I did not officially receive a FM diagnosis until I went to the Detroit FFC clinic in 2006 because I just kept getting worse and worse. When I could no longer concentrate long enough to read a book or watch a TV show, we went off to Detroit for testing.

    This was 5 years after being hospitalized in 3 different hospitals on the neuro intensive care floor. One hospital said it was TB, one said it was sarcoid and the other said it was epilepsy but all of them were ignoring the Erythema Migrans rash on my right thigh.

    This hospitalization happened right after two tent camping trips 3 weeks apart. One was in Indiana and the other Illinois right along the Kanakakee river in a park which has been shown to harbor ticks infected with Borrelia burgdorferi in all life forms. I had some symptoms of CFS and FM for many years before this camping trip. I had always been an outdoor person going back to childhood. I never connected my hobbies with my illness.

    Ticks are born as larvae and after a blood meal they morph into nymphs and then they become adult ticks which are capable of laying 3,000 - 5,000 larvae when they hatch. These bugs when hatched are about the size of a period at the end of this sentence and transform into something the size of a poppy seed (nymph) and then become the size of a sesame seed (adult). They are very hard to see on your body unless you know what you are looking for. Unfortunately, even though all of the Great Lakes States are considered endemic for Lyme Disease no one ever pushed doing a tick check after being outdoors.

    So for about 26 years, I continued to do all of the same things Nanie did. Had I Googled all of my symptoms like "insomnia + brain fog + muscle pain + fatigue + auditory hallucinations + strange skin rashes + hypothyroid symptoms" (even though I was on a high dose of Armour) I would have been led to Lyme disease web sites.

    Fortunately, for me, I got my hospital records from those 3 hospitals and sure enough it was documented by my pulmonologist that I had "mental status changes after insect bite" and they were supposed to give me the Elisa test followed by the Western Blot for Borrelia. I was transferred to a major medical center and never got the testing done. Until the Detroit FFC in 2006.

    Since I was the president of the Chicago Chapter of the Endometriosis Association, I knew that women with endo come in two flavors. Those with full blown disease or stage 3 or 4 and those with stage 1 or 2. They mainly suffered from unexplained infertility while the later stages often had some kind of immune system disease going on with asthma, allergies, candida issues, and a whole different set of problems but oddly very few women had infertility issues.

    The EA puts out a newsletter and they'd always devote lots of space to CFS and FM because so many members (stages 3 & 4) had high incidences of CFS and FM. I just always knew that is what I had from their literature. Since I have gotten my Lyme diagnosis, I have found at least 30 women with both Lyme and endo!

    For all of these 26 years, I suspected it was just CFS and FM. I googled and read almost all of the same web sites and literature that Nanie46 found. There was never any mention of Lyme disease because those with CFS and FM are still trying to legitimize their illness. Now I believe that a diagnosis of CFS or FM is an incomplete diagnosis at best.

    Like Nanie, I say this to help others, and not to offend anyone. I have no desire to fan the already fuming flames that come along with the disbelief that so many of us face with this crud. Although, I do find it amazing that people can understand bacteria from a tick bite more readily than they can understand a disease of unknown orgins.

    When the FFC ran my tests for Lyme, I was certain they wouldn't find anything. I was shocked to come back with a positive band 41. One of the nurses told me it was Lyme but the doctor said it wasn't. I believed the nurse because I finally did Google all my symptoms and found it that they are pretty much the same as those of CFS and FM.

    I spent months and then years searching for information on fibromyalgia and chronic fatigue syndrome looking for some clue that will help me recover. Now that I don't have to do that anymore I must say I'm relieved at times. Yet other times, I miss that old search for the unknown one thing that will help. It's kind of like .... now that I don't spend hours doing that I'm a little bit bored. So I've often thought I should start a medical research business using all those research skills that I self taught into helping others find alternative treatments for their diseases.

    I also took nasty antiviral meds for more than one year (acyclovir) and then Famvir which I'm still taking because my EBV titers are still high. They don't change much after bombarding them with the AVs though.

    My old LLMD was one of the most respected docs in the midwest. He states flatly that "Fibromyalgia" really means invasion of the muscle and fibrous tissue with bacteria and that this is the cause of the Gawd-awful muscle pain. Most people in his practice ditch their muscle pain at around 2 years. That was the case for me too.

    My muscle pain is gone for the most part. I do get a twinge of it now and then when my thyroid meds are too low. Then I raise up my compounded T3 and the mild muscle pain goes away. It is no where near the degree that I suffered from it before.

    It is also a well known fact that Borrelia can lie dormant in the body for years. When some people have a trauma like surgery, death, divorce, etc. it activates or reactivates much in the way that syphilis can do the same thing. Both of these illnesses are caused by a spirochete which has many life forms.

    The outer surface proteins of the Borrelia species constantly change their "raincoat" so to speak. Abx work for a while then stop. That's why Abx are changed often. Plus spirochetes encyst when they are threatened by Abx. Then when conditions are favorable, they uncoil.

    Studies have shown that spirochetes can out live Abx therapy. It is a well known fact that people with syphilis can relapse at any time. So it is foolish to think that the Borrelia species of bacteria can be eradicated with 4-6 weeks of Abx.

    I believe that I've had 3 sets of tick bites in my lifetime. Once in 1969 in the Ozarks when I was 11. Another time in high school when I had just come back from trips to NY and MI. At that time, I had a set of EM rashes on my leg which the doctor said was ring worm.

    Then I had the last known tick bite in 2001 which left me with a huge EM rash on my thigh. The tick was still embedded in my leg in the hospital so I was taking showers every 5 minutes and trying to scrub this thing off my leg. I believe that I had some sort of tick paralysis which was the reason they diagnosed epilepsy. In all 3 instances, I had a flu like illness with a fever, sweating, insomnia, restlessness, and muscle pain.

    I have been in treatment now for 3.5 years. I now have almost all good days. The only bad days I have any more are the ones where my meds are changed. I am on a full range of bioidentical hormones including Hgh, compounded thyroid and hydrocortisone, DHEA, Forteo, and progesterone. I also have implanted B-HRT pellets of estradiol and testosterone.

    I have never felt better in my life. In fact, I never knew it was possible to feel so good. I wish I had learned of all of this much much sooner. I can't get back the years that I wasted but I can control how my future is going to turn out.... which is GREAT!

  20. Nanie46

    Nanie46 Moderator


    Thank you for your post.

    After everything I have been through and reading accounts from countless others who have experienced the same thing, I believe that the borrelia bacteria is responsible for many, many cases of FMS and CFS.

    Obviously, many people do have several infections.

    I wish that each and every person on this board could see a competent lyme literate MD for a thorough evaluation, like I did.

    Of course, not everyone has lyme. I believe that many do though, and they may never discover it and get properly treated with the hope of living a normal life.