If diagnosed with FM/CFS, please consider Lyme disease

Discussion in 'Fibromyalgia Main Forum' started by Fiddler1, Mar 30, 2011.

  1. Fiddler1

    Fiddler1 New Member

    Hello, I just want you all to know that FM/CFS (even MS) symptoms are most often caused by Lyme disease, a treatable bacterial infection. (I was (falsely) dx'd with FM in 2006; I finally got the dx of Lyme in 2009. (I had been ill since a summertime "flu" in 2002.) Lyme has the recurring flu symptoms, high pain levels, both muscular and joint pain, chronic fatigue, forgetfulness, brain fog, excessive sweating, and a host of other symptoms. YOU DO NOT HAVE TO HAVE A RASH, BULL'S EYE OR ANY OTHER KIND, TO PROVE YOU HAVE LYME DISEASE.

    Lyme is a VERY controversial diagnosis in the US (and largely ignored in Canada). Research doctors looking to cash in on new tests, drugs and vaccines are denying this epidemic. Lyme literate treating physicians are the ones to see. Please check out www.ilads.org for information about the disease and to find treating physicians. Also, the documentary "Under our Skin" gives you everything you need to know about Lyme and the controversy surrounding it, both from patient and doctor perspectives. This is a must-see.

    Even if your doctor has tested you for Lyme and you tested negative, that does NOT mean you don't have it. The CDC-approved test is over 20 yrs old and was never meant to be used as a diagnostic tool (it says so right on the CDC web-site). If your doctor insists on a blood test result to accept a Lyme diagnosis, get a test kit from iGen-X lab in California. Their test is newer and much more sensitive. Many who test negative on the CDC test will test positive with this one.

    I was diagnosed after 7 years; I have a friend who, after being diagnosed with CF in 1990 and Parkinson's in 2001 was finally correctly diagnosed with Lyme just this year. This is a tragic loss of 20 years, but it could be worse-- he could have lost his life (and he's not out of the woods yet).

    I urge all of you to inform yourselves about this misunderstood and too-frequently misdiagnosed disease. I hope this will help you all.

  2. karynwolfe

    karynwolfe New Member

    Thank you Fiddler. The most common misdiagnoses I see are

    Chronic Fatigue Syndrome
    Rheumatoid Arthritis
    Multiple Sclerosis
    A multitude of mental illness diagnoses

    Many here have found out or are currently finding out that Lyme disease (and the infections that travel in tick along with it) are the cause of their long-standing illness. I myself went four years without knowing. I hope another testimony will convince people to get tested via IGeneX and not rely on outdated, unreliable tests. We have to fight for our health, no one else is going to do it!

  3. karynwolfe

    karynwolfe New Member

    These are some quotes from Dr. Burrascano (one of the best lyme literate medical physicans out there), his speech from March 21st of this year. Thought it might apply to this post.

    ********Why Igenex?

    Dr. B has no affiliation with them, no professional relationship with them, etc.

    If a test is commercialized to be sold as a test kit, it must follow narrow CDC restrictions and guidelines. Most Lyme tests are commercial. Commercial Lyme tests miss 75% of cases.

    Based on double-blind government proficiency tests, IGenex did well.

    ********Stages of Lyme

    Early Lyme – I
    Disseminated Lyme – II
    Chronic Lyme – III
    -for one or more years – immune system breakdown and its consequences
    -co-infections become important
    -serologic tests less reliable
    -treatment must be more aggressive and of longer duration

    ********The sicker you are, the less reliable the tests; lyme burrows deeper and is no longer easily detected in blood

    ********Tick Bites
    Only 17% recall having a tick bite (Texas Dept of Health)
    Only 36% recall a rash
    Only 50% have positive western blot
    Co-infections: tests are even less sensitive

    ********Sorting Out Co-Infections
    Lyme, Bartonella, Babesia, Ehrlichia, Mycoplamsa

    Lyme – Gradual onset, no sweats, 4 week cycles, multisystem, afternoon fevers
    Babesia – Cycles every few days, makes everything worse
    Ehrlichia – Sharp headaches behind eyes, low WBC, elevated liver function
    Mycoplasma – Made worse with exercise, aka “Chronic Fatigue Germ”, major fatigue, neurological disfunction, found in the sickest and poorest responding

    The Bartonella co-infection with Lyme seems to be clinically different that “cat scratch”.
    Instead, they are Bartonella-like organisms; more prevelent than Lyme in some ticks

    Clinical Clues:
    - Encephalopathy
    - Irritability
    - Anxiety
    - Stomach lining
    - Insomnia
    - Rashes
    - AM fevers
    - Night sweats
    - Tender skin nodules

    - Night sweats
    - Air hunger
    - An occasional cough
    - Persistent migraine-like headache
    - A vague sense of imbalance without true vertigo
    - Encephalopathy
    - Fatigue

    - Headaches
    - Muscle soreness
    - Persistent leucopenia (low WBC)

    - Autism-related?
    - Distant cousin to Rabies and distemper
    - Brain is the site of infection
    - Does not damage nerve cells but blocks cell function
    - Brain fog, fatigue leads to depression

    Xenotropic Murine Leukemia Virus

    68 out of 101 CFIDS samples contained XMRV
    XMRV is found on only 3% of healthy samples
    XMRV is also found present in cases of: MS, ALS, Parkinsons, Autism, Fibromyalgia
    Lyme patients who did not recover: 1005 of them had XMRV

    Does it prevent a full recovery from Lyme?
    Is it found in ticks?

    Notes from: http://sonyafightslyme.blogspot.com/2011/03/burrascano-notes-from-march-21st-talk.html
  4. Nanie46

    Nanie46 Moderator

    Hi Fiddler,

    Yes, many people who were first diagnosed with CFS, FM, MS, RA, Alzheimers, Autism, Lupus, Biplolar disorder, Depression, Anxiety, and others, later found out that the actual cause of their illness was the bacterial infection Borrelia burgdorferi and other common coinfections like Bartonella, Babesia, Ehrlichia, Mycoplasma, Rock Mt Spotted Fever, etc.

    The key here is CAUSE. You will note that all those above diagnoses have no known cause....they just give your symptoms a name, and medicate you again and again for the rest of your life.

    Dr's think that they have done their job because they gave you a dagnosis! Patients are satisfied to have a diagnosis! But they still have no idea what CAUSED their illness.

    It is likely that the cause of many of these illnesses are hidden, undiagnosed, untreated infections....many times a combo of them causing severe illness.

    Even though my Igenex western blot was read as officially "negative", it showed several Indeterminate and positive bands that my other generic lab western blot did not show. In fact, Labcorp and other labs do not even test for all bands. They leave out some very lyme specific bands which makes no sense.

    I did not have a Lyme literate MD at that point, but I had done my research and I knew that those bands were huge clues, along with my history and many symptoms.

    Good thing I did, since the 3 Dr's that looked at those western blot results all told me that my results were negative so I did not have lyme.............wrong!!!!!!!!!!!!!

    I had been diagnosed with FM for 21 years before I figured out I had lyme and found a Lyme literate MD who did the most thorough exam I had ever had, along with taking a good history and more labs. He confirmed my suspicions.

    Along with lyme, I found out I tested positive for Bartonella and Rocky Mt Spotted Fever.

    All that and I do not remember a tick bite (never even saw a tick in my life), and never had a bullseye rash.

    I have been in treatment and have been getting better. Thank God that I did not rely on my regular Dr's opinions and did my own reading and research.





  5. herbqueen

    herbqueen New Member

    If not for the horrific neuro attacks (much more than a herx) that progressed my illness when I've tried herbal protocols and then a few drugs (diflucan, flagyl-acutally for fungal theory) I'd be on that path now.

    My concern is that lymenet is very discouraging and there are so few success stories even on lymenet in the success section relative to the number of people getting treatment. I've asked my local lyme support group leader for success stories with neuro lyme that I can talk to and he did not provide any.

    In all my searching I found one woman at 5 years of hell/treatment and a bizarre story/tuor removed and ten recovered-but only 1. I've found 100x that who have not gotten better or have ups and downs. Some who are functioning (did not have not neuro lyme)- they are on continuous abx.

    I just don't test positive for lyme -but candida, cpn, ebv, parasites, hplori, phase i/ii liver detox etc etc. seems like more and more every time I get tested for something new. So is it lyme or a non functional immune system and we are part of the autoimmune/cfs/autism/ etc disease spectrum?

    Again if I wasn't so terrified of treatment putting me into hell again (where I was last year for 10 months)- I dive into it. I've asked the lyme doctor and he said there are loads but doesn't provide referencs for me to talk to either. Where are all the people with MS, parkinson's, ALS, cfs etc who are healed? I can't find them.
  6. Nanie46

    Nanie46 Moderator

    For the most part I think that people who have recovered have moved on and don't spend their time on Boards.

    My LLMD, his wife and 2 sons were all very sick with Lyme, Babesia, bartonella and Ehrlichia.

    They have all recovered. My LLMD was in a wheelchair and unable to practice medicine and he recovered.

    I'm sorry that you are so sick. My LLMD told me it is about quality of life. Not everyone gets 100% better...but 80 or 90% sounds pretty good to most people. He has treated many, many people who have recovered.

    I pray that you find the right path to take.
  7. herbqueen

    herbqueen New Member

    Thank you Nanie-- i'm curious is your llmd still taking maintenance abx? It is so very hard for since I' have this history of taking things and making me 1000 fold worse with recovery but not back to baseline with each attack. Maybe my body just can't deal with the neuro toxins or the drugs/certain herbs--I dont know -the last attack affected mybreathing, speech, swallowing, whole body and no sleep for 10 months--slowly crawling my way back. I"ve read many stories of healing from chronic disease like MS with diet and energy work, detox, etc. so I'm on that route right now working with my naturopath and a homeopath. My naturopath's sister has lyme /lyme syndrome and the abx did now work for her and the patients she see's are not getting better on abx. It's all so confusing. I wish there was better data out there than just word of mouth. Most people I know who were really really sick-after years and years of abx saw some improvement but then got really sick again.

    I keep hearing that the well people are not on the message boards. But, if ever got well I'd surely be adding my testimony to the listing and popping in ever so often. There should also be healing stories/books out there. I see them for MS -stories of recovery, But I don't see them for lyme disease!

    It's all so confusing and frustrating. I want to believe I can't get well on homeopathy, extreme diet, meditation, exercise, prayer ..............I hope I can or god will guide me to the right path.

  8. Nanie46

    Nanie46 Moderator


    My LLMD takes antibiotics once in awhile. Definitely not all the time.

    I truly hope you can get well working with your naturopath and homeopath.

    I believe that the goal is to get rid of symptoms.

    Diet changes and exercise have also helped me, along with bioidentical hormones to balance everything that was so far out of balance due to chronic infections.

    Best of luck to you. Focus on the positive....believe that you WILL get well!

    God is so good and He will guide you if that is what you pray for.
  9. herbqueen

    herbqueen New Member

    Thanks Nanie-
    What kind of diet do you follow? and what type of exercise?

    I've tried to greatly increase my raw veggie consumption per dr. wahl's diet suggetions, no dairy, no gluten, no sugar/sweetners, limited soy and corn and legumes. It's a little discouraging that I've been having more muscle pain than I've ever had in my arms (difficult to put a coat on or reach at things for do overthe head yoga stuff). My mind seems clearer on the diet. But still the fatigue has not lifted.

    I do feel like sleep is a big issue- if I could really sleep I wonder if I would have the illness. Working on meditation to improve that in additon to the elavil and melatonin for that.

    I was tested pretty extensively for MS- no lesions, many MRI's, spinal tap, evoked potential etc. all normal despite the neuropathy I have all over.

    As one honest doctor said to me- we no next to nothing about the human body!

    In addition to my regiment of diet , exercise, meditation, I also get soaking prayer, healing masses etc I do believe prayer is very powerful! Read about some of the healings at lourdes, medjugorge or through Dr. Nemeh, local healing services, etc. they are pretty amazing and unexplainable. I'm doing my part--but miracles do happen!

  10. Nanie46

    Nanie46 Moderator

    I follow gluten free, no sugar or sweeteners, no high fructose corn syrup (causes lots of pain for me), no dairy, no soy.

    I exercise at Curves 3-5 days per week for the last 6 years.

    My fatigue and brain fog lifted 2 weeks after I started bioidentical hormones, when I started sleeping much better. (DHEA, Progesterone, topical estrogen and testosterone).

    I sleep pretty well now, able to fall alseep and awakening usually once or twice but able to go back to sleep. I feel rested with 6+ hours of sleep.

    Sure beats the inability to fall asleep, pounding, fast heart at night, with 0-4 hrs of broken sleep nightly prior to bioidentical hormones.

    May God lead you to healing!
  11. herbqueen

    herbqueen New Member

    Nanie-it's me again.

    Curious on how old your are? Is it possible the bio hormones/sleep has done more your recovery than the abx? I imagine that's probably hard to tell .
  12. Nanie46

    Nanie46 Moderator

    I am 50 yrs old...48 when I started Rx for lyme.

    Bio hormones have helped my sleep, fatigue and brainfog.

    Antibiotics (doxy) has really helped my pain.

    Many areas have to be addressed to get well, not just antibiotics.
  13. roge

    roge Member

    excellent post fiddler and i agree there are no doubt some with fm and me/cfs who actually have lyme, but remember fm and me/cfs are separate diseases than lyme. we just have to look at the recent study that showed the many different abnormal proteins found in the cerebrosponal spinal fluid of those with lyme and me/cfs as evidence they are separate diseases. important point is to remain cognizant of the fact that just because you have been diagnosed with either fm or me/cfs, that doesnt mean you might not have lyme and why an igenex test would be good to get.
    [This Message was Edited on 04/01/2011]
  14. Janalynn

    Janalynn New Member

    "I just want you all to know that FM/CFS (even MS) symptoms are most often caused by Lyme disease"

    I'm sure there are many people who are misdiagnosed, but I'm not sure it's accurate to say that symptoms are "most often" caused by Lyme. Many people are misdiagnosed in general.

    While it's true that we don't know the exact cause of FM or CFS (or other conditions as well), they are doing research and looking for the cause. It doesn't mean they are all Lyme or a specific infection. They could be - I'm not poopooing anything, just saying.

    I'm always happy to hear when people get a correct diagnosis.