How Many Lyme Symptoms Do You Have?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jul 17, 2007.

  1. Slayadragon

    Slayadragon New Member

    CherylSue brought this to the board, but I thought it would be interesting to repeat in its own thread.

    Many people seem to think lab tests for lyme are unreliable and that clinical features are more important in diagnosing.

    I've never seen this list before and found it to be really useful to consider.

    My conclusion is that I do not have lyme (I will write a post summarizing why later), but I hear about an awfully lot of these symptoms from people on the board.

    I thus thought maybe people would be interested in seeing how well their own symptoms matched, and then use that information in considering what routes to look into as they move toward wellness.

    Counting the number of symptoms you have and then responding with the number (as well as any other comments) in separate posts below would be interesting for all off us, I think.

    Some people say this disease is extremely prevalent amongst people who suffer from CFS (either as an alternative or an adjunct to the viral problem), and it would be interesting to try to start to see if that's the case on this board.

    Best, Lisa


    This is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstrual pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover

  2. cherylsue

    cherylsue Member

    My approximate number of symptoms (some of them seem to overlap) is 38.

    I've been tested 3 times for Lyme and the tests have come back negative.

    Go figure.

  3. dshor

    dshor New Member

    I have 19 symptoms, though like Cherylsue, some overlap. I've been tested twice for Lyme. Once with Unilab in CA, Lyme AB IGG Serum, came back indeterminate--suggest retest. Second time, with Specialty Lab in CA, Borrelia burgdorferi IgG and IgM antibodies, which came back negative.
  4. Daisys

    Daisys Member

    I came up with 47 of the symptoms. I just had the 2nd Igenex western blot test result show 0 bars positive. This makes it seem very doubtful that I have lyme disease, even with all the symptoms.

    Now I'm doing a CD57 test which measures a certain white blood cell that is low only with lyme infection. This one will be definitive. Meanwhile, I'm back on doxycycline which is effective with lyme, mycoplasma, chlamidia pneumonia, and other things.

    Cherylsue, my doctor says the Cowden protocol is great, but in his opinion only effective against lyme. I'm still keeping it in mind, though. That burbur sounds very helpful, and I'm sure that would be useful in any sort of detox.

    It's such a puzzle. Sure wish the answers were easier, quicker, and cheaper, to find!
  5. cherylsue

    cherylsue Member

    Wow, your doctor liked the Cowden protocol, but only for Lyme? What about herpes viruses?

    You have all the symptoms, yet you are negative by testing? Is he going to treat you with the Cowden protocol just in case?

    You certainly are at a confusing crossroads. He seems to be a pretty knowledgeable doctor. Too bad he isn't closer to Chicago.

    Keep us updated. This is very interesting.

  6. kellyann

    kellyann New Member

    I have 48, lucky me, nope, haha! I do have lyme disease though. I was totally amazed at how many of the symptoms I do have when I found out I was positive. I am having a week from hell. I hurt so bad I can barely stand it. I just started a new antibiotic this week and it is killing me. I can't even begin to describe the pain. My kids can't understand how I can't just jump up and run them all over town, jeez. I am keeping my 9 month old grand baby because my son and his girlfriend, the babys' mother can't take care of her. The baby stays up all night fussing, she is cutting teeth, and I am so exhausted I could just croak. I mean every night this week the baby has kept me up past 3 a.m. in the morning. Then the baby's parent's come over wanting me to run them around to job interviews during the day. And my teenager wants me to drive her to band practice for the marching band. I can't do everything, I am so sore I can barely walk or even sit up straight. I had a fit this morning, told them all, well, not the baby of course, haha, to leave me alone, that I was not doing anything for anyone today and I didn't give a dang who liked it and who didn't. That they'd all better just leave me alone! They did too, thank goodness.

    Sorry for going on just killing time while I waited for the baby to wind down and fall off to sleep.

  7. victoria

    victoria New Member

    For myself, I counted 22.... my husband 24... I think some of these symptoms should be weighted as to severity...

    And at any rate, for my now 20 yo son, I counted 43...

    as I've said before, my son has chronic Lyme, unequivocally, he WAS positive 2X even to CDC 'surveillance standards' plus clinical picture.

    I am not doubting all 3 of us have it as we've lived in the same place for 20 years in the country on acreage that we've all hiked many times... I just think that my husband and I may have had stronger immune systems perhaps... but we've not been tested ($$ is being spent on son).

    All I can say is that my son had many symptoms in common with me when it started, but quickly became much worse--

    much more pain & other physical and neuro symptoms than me. Not sure if it's because he caught it young or because he obviously has co-infections of babesia (gets sweats at anytime, not just night) and bartonella... remember the probability of having at least one co-infection is higher than not.

    The fact that the same abx are used for many of the different stealth infections, whether for Lyme or one of the co-infections I mentioned above, or others like mycoplasma etc., muddies the picture somewhat, as the tests ARE very unreliable.

    And, all I can say is, that for my son, he is slowly getting better with continued oral abx. I think that if I hadn't just been learning about Lyme, the dx would've been missed (local doctor had no idea altho he agreed that something was wrong; I dug further and found the best LLMD in the southeast) - and worse, if he'd been female, he'd have been writtten off quicker with FM.

    all the best,

  8. dani78xo

    dani78xo New Member

    I probably have a lot, but honestly, the symptoms of FM overlap SO much with other conditions, it's kindof pointless to sit around guessing how many other conditions we could have.

    Going by our symptoms, most of us COULD have cancer, some of us COULD have a brain tumor. Nearly all of us COULD have alzheimers; It's virtually pointless to list all of the diseases we COULD have. We all know that FM and CFS are exclusive diagnosis; we get tested for EVERYTHING before getting diagnosed.

    It'd be impossible to miss something so blatantly obvious, and I know that some people DO get misdiagnosed with FM when they really have lymes, but listing all the symptoms only brings hysteria and suspicion. Personally, I wasn't ever bitten by a tick any time soon before I got sick, but I was tested for it anyways, as a precaution.

    I don't think it's necessary to test ten times just because you have the symptoms; like I said, we would have an innumerous amount of diseases if we went by our symptoms. Most of us have accepted that our symptoms overlap with other illnesses; that's why it's hard to get a diagnosis.

    But if everyone who had some sort of condition in the world looked at this list, I bet they'd have a considerable number of symptoms, too. It doesn't mean they have it.
  9. greatgran

    greatgran Member

    Have been tested for lyme's twice, both were negative..My symptoms are also cfs/fibo ..I doubt my dx so often..

    I think the CFS/fribo has to have a cause, I am 65 years old, never had anything so devastating to my body and mind..

  10. mollystwin

    mollystwin New Member

    There are LOTS of people who think (or thought) they have CFS, MS, FM and other illnesses who really have lyme. I am one of those persons.

    Dr. Lida Mattman tested all her patients who had FM and over 90% had lyme. Listing all the symptoms does not cause hysteria and suspision, it enables people to get adequatly tested and diagnosed! Even the CDC states that many more people have lyme than they report.

    Just because someone doesn't remember a tick bite doesn't mean they were not bitten. As stated in Lisa's post above, only 50% of people remember a tick bite. I don't remember a tick bite. Neither does my sister or my SIL. And I was tested several times with negative results before I got an accurate test. IMO one negative test does not mean you do not have it.

    The point here is Lyme is different than cancer or alzhiemers. There is a LOT of misdiagnosing going on with lyme and FM and CFS. Testing is not accurate and diagnosing is difficult.

    My sister and I expect to fully recover from lyme and go on with our lives. There are many more people who could be like us if they would get a proper diagnosis. There actually have been quite a few on this board who have read these kinds of posts, got tested and are being treated, and are getting better.

    Hopefully with the new Columbia Univeristy research center and the NIH research they will discover a better way to diagnose, test and treat this illness. In the meantime, I will continue to tell people of the symptoms in the hopes that they can be treated as well. I know some get annoyed with me, but if I help even one person get diagnosed, it will have been worth it.

    I have over 40 symptoms, but not at the same time, and many didn't show until I started herxing from abx.[This Message was Edited on 08/15/2007]
  11. Slayadragon

    Slayadragon New Member

    I checked off my symptoms on this list a while back, as described below.

    I include them only because I think they demonstrate that it is possible to have CFS without having most of the symptoms above.

    Many people have lyme in addition to CFS, I think.

    If I had a lot of the symptoms on that list, I would look into lyme treatment no matter what the lab tests said.


    If I were to stretch a point, I'd count 15 total since getting CFS.

    However, two (mood swings and depression) were present long before I got CFS, and have been controlled basically fully with a mood stabilizer.

    "Fatigue" is marked twice, so I can eliminate one of those.

    Three more (oversensitivity to light and sounds, ringing in ears) were present only briefly after I got sick in 1996 (though they re-emerged at various points in time after starting the AV).

    That gives me nine symptoms left (fatigue, difficulties concentrating, sleep difficulties, swollen lymph nodes, flu-like onset, unexplained weight changes, can't get full breath, constipation, diarrhea).

    Four of these are definitional for CFS, and a fifth (flu-like onset) seems typical of a very big subset.

    The lung problems seem to be a result of chlamydia pneumoniae, which I likely will treat soon.

    The diarrhea/constipation seems to be related to candida and minor parasitical infections.

    I don't know about the weight changes. They seem to be based to at least some extent to what's going on in my life (e.g. how much energy I have to be active) though.
  12. poeticbobbi

    poeticbobbi New Member

    I have almost all of those symptoms.Should I consider mentioning that to my Dr???
    Interesting and frightening...
  13. tansy

    tansy New Member

    Counted 50 as I went down the list. I always felt ME/CFS did not explain everything but it took a long time before I took borreliosis/lyme seriously. Needless to say a LLMD had no problems recognising it and I tested positive for a borrelia infection and CPn which can cause overlapping Sx.

  14. dani78xo

    dani78xo New Member

    I wasn't making a jab at the people who really do have lyme's; I was stating the fact that most people who get diagnosed with fm have already been tested for lyme's--or they SHOULD have been, before the diagnosis, since it is exclusive.

    I was only meaning that just because you have a lot of the symptoms, it doesn't mean you have LYME'S. There are SO many symptoms incorporated with FM and CFS, it's hard to keep track, and of course a lot of those are going to overlap.

    I was only meaning that people who got a reliable diagnosis don't need to be freaking out that they have a lot of the symptoms; these diseases have some really similar symptoms.

    I didn't mean to be rude in any way, so I apologize if I came off that way.
  15. monicaz49

    monicaz49 New Member

    This topic is extremely messy, but is very important.

    As someone who runs a CFS and FM group and attends a lyme group...I hear and learn alot about the concern of misdiagnosis, etc.

    Ive had 3 lyme tests done by kaiser which were all negative and doctors say that i do NOT have it. However, I have a positive Igenex test and a confirmed diagnosis given to me by a lyme literate doctor.

    CFS and Lyme have many many similarities. you have it or do you not? Its not a clear cut answer. No one wants to take long term antibiotics unnecessarily but "what if".

    I have experienced at least 25-30 symptoms during the course of a few years. I know I have CFS/FMS, but not 100% sure if its from Lyme. (And i have a positive test!)

    Just know that tests are unreliable. You DONT need to have a bullseye rash, and that if you think you may have should see (its amazing how similar the topics there are to the ones here).
  16. mollystwin

    mollystwin New Member

    Hey there! I don't think you came off as being rude. You had an opinion that you expressed. And you have a valid point. Not everyone with CFS will have lyme, but I believe a subset does.

    Because I went so long being undiagnosed, I feel strongly about getting tested and ruling out lyme for those who have FM or CFS. I just don't want anyone to miss out on recovery if there is that possibility. I come on too strongly sometimes, so I'm sorry if I sounded rude in any way. I just want people to get better!!!
  17. suexi

    suexi New Member

    i have 35 symtoms..tested once with quest; came out negative.. Then with igenex and it came out positive. Then I was diagnosed with "lyme" with an LLMD but was unable to see him because he is too far. I have chronic lyme..have been sick for over 5 years. Two drs say i have probably had it for 10 years or more. For the first 4 or more years, I thought it was CFS. And nothing worked; i just got worst over time.

    I am definitely willing to take the risk of long term abx. I have been on them for 6 weeks, but had to cut down as I was Herxing so BAD and didn't think i could make it to my appt. next week for a new LLMD which will take about 8 hrs to drive there. I'm scared but I have to do it. I only have to go that far for the first visit. After that it will be much closer.

    It was VERY difficult to find anyone good here in Calie. I think that is the main problem. So many more of you would be diagnosed with Lyme if there were more "good" LLMDs around. I'm Sure of it.


  18. kking0412

    kking0412 New Member

    the initial tests done at my (fibro knowledgable) GP's office were negative for Lyme, however my infectious disease dr sent me for a (non insurance covered, $180.00 test done only in CA) ~ Western Blot Lyme Test ! which did come back positive.
  19. bunnyfluff

    bunnyfluff Member

    Not to be rude, but the point being- if you do actually have Lyme, it can be cured, so why not know the truth?

    I was diagnosed with FMS/CFS/Chronic EBV and kept getting sicker and sicker as time went on. I was told I did NOT have Lyme by standard tests, and I was told to just "live with this". I lost 6 years of my life so far to this illness.

    Well, I was not satisfied with that, and no one else has to be, either. I DO atually have Lyme, and it was discovered in a "live" blood screen. Lyme can encase themselves with your own immune system so as not to be detected, and their neurotoxins wreak havoc in the system, as well as the coinfections of their friends.

    So, it is not "hysteria", it is an epidemic, and one that is overlooked by testing, as well as Doctors. People with these conditions need to know there is hope, and that many can improve. Not give up and wallow in illness.

    lisa, thanks for reposting this info.
  20. Slayadragon

    Slayadragon New Member

    Perhaps it is worth noting that Dr. Paul Cheney commented recently that the relatively anaerobic environment inside CFS sufferers' bodies helps to foster the growth of candida (yeast), chlamydia pneumoniae, and lyme.

    (This is from the DVD's from his talk in Dallas last fall.)

    Dr. Montoya seems to be in agreement about the "anerobic enviroment" concept, since he is testing patients in the Valcyte study for oxygen usage during exercise.

    I personally have dreadful problems with candida and also have tested positive for chlamydia pneumoniae.

    That's why I'm so interested in lyme. If I were to conclude that I had that on top of the CFS, I would want to consider treating it aggressively (just as I have treated the candida aggressively and may go after the chlamydia pneumoniae soon).

    Based on this list and several negative Western Blot tests though, I'm reasonably sure I don't have it yet.

    I don't know how I missed it. After hearing all the Lyme stories on this board, I feel very lucky though.

    i'm staying far away from woods from now on. (And at least now when I don't go out all day, I can attribute it to the proactive endeavor of "avoiding lyme disease"....)

    [This Message was Edited on 08/15/2007]