Discussion in 'Fibromyalgia Main Forum' started by TiredAndCrabby, Mar 18, 2011.

  1. TiredAndCrabby

    TiredAndCrabby New Member

    I have to spread the word... After suffering for almost 24 years what was diagnosed as Fibromyalgia, it has been found that I actually have Lyme Disease! I started IV Antibiotics March 1, 2011 and have had the BEST 2 weeks I've had in that many years! I urge everyone to research Lyme Disease (there are a few specialists with great sites) as it has been acknowledged by top doctors that the blood tests for Lyme are so inaccurate that GOOD doctors don't bother testing that way anymore! There are symptom checklists just like for Fibromyalgia (with essentially all the same symptoms anyway) and I challenge all doctors to at least TRY treating with antibiotics instead of shoving narcotics at us all! What can it hurt??
    It has been found that many people diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, and even Multiple Sclerosis were incorrectly diagnosed, it had been Lyme all along!
    I have been researching on my own for over 10 years, and finally found a doctor willing to try the treatment! It's too late for me to be cured... I will have Ups & Downs (mostly Downs) for the rest of my life, but the exciting part is that at least now I'll actually HAVE SOME UPS!!!
    Lyme CAN be cured if treated soon enough, so again, I urge all of you to be your own best advocate, find a doctor that's willing to listen and try different things, and at least TRY to, if nothing else, rule out Lyme with a trial of IV antibiotics... you may be very pleasantly surprised to find you feel better in short order!!
    One point of interest... it is now believed that Lyme can be spread through mosquitos and other biting insects, not only deer ticks!
    Please help get the word out there... there are still too many stubborn doctors that refuse to accept this possibility, and too many of us suffering needlessly! I can't get back the last 24 years, but if even ONE person benefits from this, it will have been worth it!
    Thank you. I wish you all: the help you need, the strength you need, and the good health you deserve!
    [This Message was Edited on 03/18/2011]
  2. quanked

    quanked Member

    I just love your name--it describes me to a T most of the time. It gets so old.

    I have checked the list of symptoms for Lyme disease but I did not think that I met the criteria but I will check again. I do not think that I have ever had a tick on my body. Apparently I have had EBV--a doc told me this about 10 years ago. I think I have read the list more than once--symptoms of Lyme I mean.

    What is the name of the antibiotics you are taking? How long do you have to take them?


    it was posted by:

    3/4/11 4:58 AM

    New Findings for CFS and Lyme Disease

    Spinal Fluid May Hold Clues to Lyme Disease, Chronic Fatigue Syndrome
    Strong evidence suggests that the central nervous system is involved in both conditions
    URL of this page: (*this news item will not be available after 05/25/2011)

    By Robert Preidt
    Thursday, February 24, 2011 HealthDay Logo
    HealthDay news image

    Related MedlinePlus Pages

    * Chronic Fatigue Syndrome
    * Lyme Disease

    THURSDAY, Feb. 24 (HealthDay News) -- An analysis of proteins in spinal fluid can help distinguish patients with Lyme disease from those with chronic fatigue syndrome, a new study reports.

    It also appears that both diseases, which can cause similar symptoms, involve the central nervous system and that protein abnormalities in the central nervous system are causes and/or effects of both conditions, said the research team, which was led by Dr. Steven E. Schutzer, of the University of Medicine and Dentistry of New Jersey -- New Jersey Medical School, and Richard D. Smith, of Pacific Northwest National Laboratory.

    In the study, the investigators analyzed spinal fluid from 43 patients with chronic fatigue syndrome (CFS), 25 people who had been diagnosed with and treated for Lyme disease, but did not completely recover (neurologic post-treatment Lyme disease, or nPTLS), and 11 healthy people.

    The researchers identified 738 proteins present only in the spinal fluid of CFS patients and 692 proteins found only in the spinal fluid of nPTLS patients, according to the study findings published online Feb. 23 in the journal PLoS One.

    Until now, there have been no known biomarkers to distinguish between Lyme disease and CFS, nor strong evidence that the central nervous system was involved in the two conditions, the study authors noted.

    "One next step will be to find the best biomarkers that will give conclusive diagnostic results," Schutzer said in a journal news release. "In addition, if a protein pathway is found to influence either disease, scientists could then develop treatments to target that particular pathway."

    "Newer techniques that are being developed by the team will allow researchers to dig even deeper and get more information for these and other neurologic diseases," Smith added. "These exciting findings are the tip of our research iceberg."

    SOURCE: PLoS One, news release, Feb. 23, 2011

  3. Nanie46

    Nanie46 Moderator


    Same here.....was Dx with FM 23 years ago and found out 2 years ago, through my own research, that I have Lyme and Bartonella. Found a LLMD and I am getting better.

    Most people with lyme do not have just lyme. Ticks are a cesspool of infectious diseases.

    Bartonella, Babesia, Ehrlichia, Mycoplasma, etc are very common coinfections.

    I never saw a tick or a bullseye rash. Many people do not.

    My western blot from Quest was negative, showing only band 41.

    My western blot from Igenex was read as "negative" also, but it showed many more positive and IND bands, which was a very helpful clue.

    A negative lyme test should never, never be used alone to rule out lyme.

    Igenex tests for 10 IgG bands and 10 IgM bands. Other labs test for only 3 IgM bands. They actually don't even test for some very lyme specific bands.

    Igenex also includes 2 strains in their testing, not just one.

    Go to

    You can call customer service or request a free test kit by contacting Igenex on their website.

    All the paperwork is included in the kit.

    You will need a Dr to sign the order form and provide his info.

    You will need a western blot for lyme, test #188 and #189.

    When I did this 2 years ago, the cost was $ can check with Igenex about cost.

    Test must be prepaid with credit card or check. They do accept Medicare.

    Make sure you have the blood drawn in the morning on a Monday or Tuesday, then the lab should prepare the blood and fedex it the same day to's a 2 day fedex.

    You want the blood to reach the lab before the end of the week so it does not sit over the weekend.

    You should not be taking immune supressing meds when getting this test.

    Some people do an antibiotic challenge first, many do not.

    Any Igenex...they are very helpful.

    Igenex will release your results to your Dr only.

    Important: Get a copy of your results from your Dr.

    Many patients with lyme actually have an officially "negative" result.

    You can find some very important clues, however, from looking at the individual band results and comparing them to the western blot info on page 7 of this very important paper by a Lyme expert....

    and to the testing info at this site.....

    It is very important to know that a lyme test that is read as "negative" does NOT mean that you do not have lyme.

    Lyme is a clinical diagnosis...means it is based on history (ie: exposure to outdoors, deer trails, and subsequently having red spotches on abdomen that grew to the size of an enlarged quarter), symptoms, exam and testing.

    In the first link above titled "Advanced Topics in Lyme Disease" you will find a symptom list on pages 9-11 and coinfection symptom info on pages 22-27.

    Dr B says that the ELISA test is worthless.

    Here is some more good info to read:

    Highly recommended: Go to on flash discussion.....sign up for free.....go to the "Medical Questions" board and read posts and post your is a very busy board with lots of very helpful and intelligent people. also has a "Seeking a Doctor" board, general support board , etc.
  4. gapsych

    gapsych New Member

    You beat me to it!!

    I look forward to seeing the future research on this.

    I am tired and cranky, too!!!

  5. TiredAndCrabby

    TiredAndCrabby New Member

    I don't know if this is too late to help you... for some reason I thought if anyone responded to my post I'd receive notification via my E-mail!
    I hope your doctor has been helping you but I have to say BLOOD TESTS FOR LYME ARE A WASTE OF TIME!!!!!! Lyme specialists do not even bother using blood tests because of a few reasons:
    1) Lyme bacteria can manifest in 28 different ways and they can only test for two
    2) Lyme bacteria leaves the blood stream incredibly fast and can "hide" as well, so the odds of getting any bacteria in a little vial of blood are almost non-existent
    Those are quotes of Dr. Bernard Raxlen in New York... a wonderful website if you can check it out!
    I urge you to get a doctor to let you try antibiotics. What can it hurt?? Even oral would be ok if you can tolerate them. Unfortunately I couldn't (they made me vomit horribly) so I have to have IV antibiotics which actually has turned out to be a HUGE blessing!!! I noticed a difference in a lot of symptoms within 24 hours!!!!! Even within the first 24 hours of the oral (before they made me sick) I had some changes. The most remarkable was that I slept 6 hours straight through and even felt rested!! It was beyond my wildest dreams!
    A warning though... if it is Lyme, the antibiotics can make things worse before they get better.
    Have you ever had any other type of infection such as Tonsillitis, or a bladder infection that when you started the antibiotics you actually noticed you kind of felt generally better? Nothing major, just maybe a slight decrease in symptoms? (You may have, and not even made the connection since we somehow manage to have better days sometimes anyway, but it's worth trying to remember)
    Also, Lyme works on a 28 day cycle, so if you're a woman you may have wondered why you seemed to be "PMSing" at other times then your usual menstrual cycle (if relevant). A friend of mine wondered how she could have PMS when she'd already been through menopause!!
    There are 2 excellent doctors in New York, 1 in Minnesota, 1 in British Columbia, Canada, and 1 in Manitoba, Canada that I know of, so if your current doctor isn't willing to let you try the Lyme treatment, and you would be able to get to any of these places, please let me know and I can give you their information.
    If there's anything else I can answer for you, I'd be more than happy to... I promise to check back more often!
    In the meantime, I hope you're doing well, and good luck!!
  6. TiredAndCrabby

    TiredAndCrabby New Member

    I'm so sorry I didn't come back to the message board. I thought responses would come to my e-mail so I believed no one had seen my post!
    I will share the info you sent with the people I know that are working to get Lyme acknowledged better where I live... it sounds like there may be reason to be hopeful!
    As for your situation... have you gone through the symptom check list of Dr. Ernie Murakami in British Columbia, Canada?? He states that 20 yes answers are cause to believe a Lyme diagnosis should be strongly considered.
    Another doctor's website you may want to check out is Dr. Bernard Raxlen in New York.
    My suggestion would be that you see if you can get a doctor to prescribe antibiotics just to see if you experience any benefit. Amoxicillin is commonly used, as is Doxycycline, and a few others. I was unable to tolerate any orally so have to have them through an IV, but either way is acceptable. My belief as I stated in my initial post, is that doctors seem to have no problem prescribing narcotics, so what can it hurt to try antibiotics? You would know in such a short time whether or not there was any benefit, so there would be no time for your body to develop a resistance to them!
    If you've ever noticed that you felt better when taking antibiotics for any other condition, that is a significant "hint" that you may have Lyme.
    I hope this helped! Please feel free to write me anytime, I will be checking back more regularly now that I know I have to!!
    Take care!
  7. TiredAndCrabby

    TiredAndCrabby New Member

    Thank you for this! Wow!
    I'm so new to message boards that I keep messing up (good thing I can blame it on "Lyme Brain" or "Fibro Fog"!!

    Since my brain function has been hindered terribly due to my illness, I'm not sure if I'm about to repeat info you posted, if so, I apologize, although it doesn't hurt to repeat to make it clear...

    Less than 50% of people with Lyme develop the rash, and Lyme tests are horribly inaccurate!
    Dr's Ernie Murakami (Canada) and Bernard Raxlen (US) have fantastic websites... they are world renowned Lyme Specialists, and neither one bothers with Lyme blood tests! They of course make sure everything else is ruled out before making a definitive Lyme diagnosis.

    Let's get the word out to everyone diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Sclerosis - Lyme can cause white lesions in the brain just like MS (hense the many misdiagnoses) to demand their doctors at least try antibiotics... as I've said many times, it can't hurt!!!
    Thanks again!!
  8. quanked

    quanked Member

    I do not think that I have had a tick bite. Not sure if I have any rashes.

    What kind of anitbiotics are you taking? How are you doing at this point? Are you improving?

    I wonder about the brain lesions--is anyone getting the tests (MRI's?) to find out if they have the lesions?

    At this point in time, after years of reading and listening I cannot rule anything out.

    My doc filled out the paper work for me to get the XMRV tests but I am seriously rethinking this idea. There do not seem to be any definitive answers about if XMRV is in or out.

  9. Nanie46

    Nanie46 Moderator

    Even though lyme testing is inaccurate, especially the ELISA, which is worthless, and western blots done at regular labs, I would get a western blot IgG and IgM from Igenex lab in California....test #188 and #189. Call for a free test kit with prepaid fedex label.

    Igenex is a specialty lab that excels in testing for tick borne diseases. Even if the result comes back CDC negative (like mine did), you can find some important clues through the Igenex western blot.

    Igenex tests for 10 IgM bands, not just 3 like other regular labs (Labcorp and many others).

    The additional bands that Igenex tests for are lyme specific bands that other labs leave out.

    It makes no sense to leave out very lyme specific bands on a lyme test, but thats what other labs do.

    Dr Burrascano, a lyme expert, says on page 7 under "western blots", of this important paper, that you should see band 41 (the flagella) and one lyme specific band....

    Dr C in Missouri says this about testing and lyme specific bands:

    My Igenex western blot was CDC negative, and 2 Dr's (not Lyme Dr's) looked at that that result and proclaimed, "You don't have lyme!". I got a copy of my results.

    I had researched lyme, and knew about lyme specific bands and what those 2 lyme experts above, said about western blot results.

    I knew that I had some "indeterminate" and + results on a few lyme specific bands.

    That was enough proof for me, along with my symptoms that were all on the lyme disease symptom checklist (page 9-11 of Dr Burrascano's paper above), and a history of a flu-like ilness etc.

    I NEVER saw a tick, a bite or a rash. so be careful not to discount lyme disease because you never saw a tick bite.

    Ticks in the nymph stage, which can bite and infect you, are the size of the period at the end of this sentence. You can see why you may never see a tick.

    I then went to's Seeking a Doctor Board and found a LLMD in my thing I ever did, besides doing my own research.

    Anyone who is chronically ill who has symptoms like fatigue, pain, thinking problems (brain fog, memory problems, etc), pain, insomnia, etc should seek a Lyme literate MD who follows ILADS guidelines for a good evaluation.

    More proof was gained as I had further testing for other tick borne diseases through my LLMD....I was IgG positive for Rocky Mt Spotted Fever.

    Also positive for Bartonella but that can be spread by fleas and cats also...I never had a cat.

    Bottom line is this.....VERY IMPORTANT: Lyme should NEVER be ruled out by just a negative lab test....but testing can have some value.

    A lyme diagnosis should be made based on a patients medical history, symptoms, exam and labs....not just labs.

  10. Waynesrhythm

    Waynesrhythm Member

    One of the main reasons I stopped coming to the ProHealth forum was because of the antagnostic attitude by the moderators toward Lyme posts. I seem to remember Jorgie starting a thread entitled something like, "There's a Lyme Board, Use It!". Since I had been diagnosed with Lyme, I was trying to determine how much of my health symptoms were due to Lyme, and how much were maybe due to ME/CFS. It appears now these two different diseases are very similar, but have differing spinal fluid protein analyses.

    So I guess my question is: Is it OK to discuss Lyme Disease on this forum? I don't want to invest a lot of time and energy into posting if a moderator is going to come along and delete my posts or an entire thread just because another ProHealth member gets upset about a discussion of Lyme topics on this board. I just got really tired of having mine and others' posts deleted whenever the word "Lyme" came up in a given post. Have things changed here?

    Wayne[This Message was Edited on 05/17/2011]
  11. Waynesrhythm

    Waynesrhythm Member

    Hi T&C,

    Just wanted to congratulate you on getting a proper diagnosis for yourself. Even more congratulations for finding a treatment that is working for you and helping you do better than you have in years. May you continue to improve!

    Best, Wayne
  12. Waynesrhythm

    Waynesrhythm Member

    Thank you Nanie for all the great links and information you're providing. Though I got a Lyme diagnosis over two years ago, I've not had the energy or cognitive ability to pursue proper treatment. But I'm finally getting started, even though it's still incredibly difficult. Your tips are very much appreciated!

    Best Regards, Wayne
    [This Message was Edited on 05/17/2011]
  13. Nanie46

    Nanie46 Moderator


    You're welcome Wayne...and glad to see you here!

    It is ok to post about lyme....there are more FM/CFS patients here who get diagnosed with lyme all the time...and people need to see the info....they don't go to the lyme board if they don't know they have lyme.

    The best way to avoid posts/threads getting deleted is to not post anything argumentative in response to someone who to ignore them....then there is no argument and no reason to delete a thread.

    Have you joined

    They have great boards for lyme patients...Medical Questions, General Support, Seeking a Doctor, etc.

    If you haven't joined yet, I urge you to....lots of very intelligent and helpful people there.

    Just go to on Flash Discussion....sign up for on one of the boards where you want to read or post, ie Medical Questions.....then, to post, click on Post New Topic.

    To move from one board to another you can scroll down to where it says "Hop To" and click on the drop down menu, and choose another board and then click Go.

    Or you can click on Forum Home or Questions and Discussion near the top of the page.

    Hope to see you on where I am Dekrator48!

  14. TiredAndCrabby

    TiredAndCrabby New Member

    I decided after 23 years of not getting help to switch to a doctor that was fairly new here (I live in a small town so my options were limited) this doctor is from South Africa and has more experience with Lyme.
    He went through my history, tested me for anything and everything else to rule out any other problems, even had me have an MRI - which in my case did not show white lesions. When everything else came back fine he said that my symptoms pointed to Lyme and I should try antibiotics. I did and noticed a difference within 24 hours! After a few days I couldn't tolerate the oral antibiotics so was switched to IV and I can say the first 10 days of treatment was like I was a kid again! The problem with Lyme is that as the antibiotics kill some of the bacteria, you get sick (sometimes VERY sick) but hopefully once I'm finished this 3 month treatment I'll be better again for awhile! I will have to continue treatment periodically for the rest of my life (this new doctor was shocked and angry that no one tried this earlier... I'm so happy with him!!)
    The reason I myself thought of Lyme was because I met a woman that had been diagnosed with CFS many years ago, we became friends and noticed our symptoms were so similar, and then miraculously she was tested for Lyme and it came back positive. She had done the testing through Igenex in California... there is info on them in a posting in this discussion. She started treatment through a doctor far from us and had wonderful results, however where we live, it's required you have 2 positive tests results to have Lyme acknowledged, and her future tests were negative... it's a bureaucratic nightmare! Thankfully for me, she was able to get a doctor in Minnesota that is a world renowned Lyme, CFS, and FM specialist to help her, so she's spread the word here and I was able to get help too!
    It is my belief (and I'm not a doctor, I'm just someone who suffered horribly for too many years) that if someone is diagnosed with CFS, FM or MS and has a lot of the same symptoms as is in the Lyme checklist, especially a fever, that even if it's not Lyme there has GOT to be some sort of infection!! I could be wrong. It makes sense to me though that if there's a fever, it means the body is trying to fight something, so why not try antibiotics to give it some help??!! I know that everytime I had antibiotics due to some other infection in all those years, all of my symptoms got better to some degree... that should have been a huge hint to my old doctor!
    I would like to mention again that it is now believed that Lyme can be spread through mosquitos and other biting insects, so it should not be ruled out just because there wasn't a tick bite! And, I can't say this often enough, do not let it be ruled out due to negative blood test results!
    I know I can't write things well enough to have the story come out clear, but I hope this helps some... I SO wish we could all have a conference call!!
    I hope you find the help you need
  15. TiredAndCrabby

    TiredAndCrabby New Member

    That is really too bad. I'm shocked, and speechless (which is a huge feat for me! teehee) I could understand that because in the past no one was really aware of Lyme... where I live there are still doctors and members of medical boards that don't believe we have it here while meanwhile there is so much proof right in front of their eyes, it's frightening!
    I hope that now that there is so much info pointing to CFS, FM and MS misdiagnoses that we will be allowed to share our info here. It's appalling to me that people are being told to just deal with being sick and that they shouldn't even try to find other answers.
    I myself was to the point that I could not stand the thought of living like I had been for another 20-some years, but the info I got on Lyme (and subsequent treatment) gave me hope if nothing else!!
    If something happens to the posts here, I suggest we all meet on a Lyme Board then!
  16. TiredAndCrabby

    TiredAndCrabby New Member

    I feel like I'm repeating myself over and over... and getting too weak to keep typing... do you know if everyone that read my 1st post is able to read all the responses to and from all the other people?? If you're not able to, please let me know and I WILL make sure to get you the info you need.

    Thank you!
  17. TiredAndCrabby

    TiredAndCrabby New Member

    I didn't read far enough down to see your other posts. Thank you for the well wishes! I just want to say I was in the same situation in the beginning as you... I didn't have the strength to pursue the proper treatment. Especially since I was supposed to take antibiotics with food but was too ill to get the food! I never thought I'd be able to get to the hospital every day for a minimum of 6 weeks for the Iv treatment, but as I've said, after 24 hours there was such a change I've now managed to go everyday except one day last week (was too weak to get up) for almost 3 months!
    I know my friend almost died due to getting septic during her treatment so she had to be treated in the hospital... would there be anyway you could be an in-patient so the staff can help you??
    I feel so bad for you... you're so close but yet so far. Please keep me posted on your progress!
    Wishing you well
  18. Nanie46

    Nanie46 Moderator

    Hope to see you on's Medical Questions board and General Support Board.

    There are instructions above, in my post to Waynesrhythm, about how to join and post.
  19. Nanie46

    Nanie46 Moderator

    "Under Our Skin", a documentary about the unrecognized lyme disease epidemic in the USA is being shown on the Public Broadcasting Channel.

    Check this site to see if and when it is being shown in your area...

    It is also available to watch on Netflix and's Instant's a MUST SEE!

  20. TiredAndCrabby

    TiredAndCrabby New Member

    Thank you again for all your helpful info! Do you have Lyme? (you may have mentioned already but I don't retain things well anymore, sorry)
    I will be telling my friend about lymenet, and as many others as I can too... she is so learned about Lyme, and learning more everyday! She has been a tremendous help to me and many others, and I'm sure she could use some more support too!
    I don't know how you're doing... do you have a good doctor? Are you feeling well?
    I do remember seeing you post something about more and more people here being diagnosed with Lyme... how exciting! I know I've been so relieved to go from being told to essentially suck it up and deal with it, to now having some hope for the future! Even though the rest of my life will be ups and downs, I'm thrilled to finally have some ups!!
    Hope this finds you well!

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