Could I Have Lyme??

Discussion in 'Fibromyalgia Main Forum' started by bdancer, Aug 20, 2008.

  1. bdancer

    bdancer New Member

    Hello all,

    I'm fairly new to the boards but have been reading A LOT!!

    I am so happy that I have found this website...I have learned so much from all of you that post here...


    I have been wondering if I might have Lyme Disease too.

    I have almost all of the symptoms but it seems like most people with Lyme have more severe symptoms (like they have severe tremors or cannot walk/can hardly walk).

    I know there are many of you here that have been diagnosed with Lyme all of you have very severe symptoms or are there people who have Lyme who's symptoms are less severe?

    For instance: I can walk but sometimes it feels like I'm walking for the first time. It feels strange like my legs don't want to cooperate and I have to think about walking normal. Sometimes I have trouble walking straight or I start to lean/veer to one side. Sometimes it feels like my legs are so weak that any moment they will give out but it's never actually happened.

    I could give many other examples.

    I am open to any comments, thoughts and suggestions.

  2. lpn9999

    lpn9999 New Member

    Lyme shares a number of symptoms with CFS and FMS, and it's worth looking into. A number of people with Lyme also receive a diagnosis of FM and vice versa. If you look over at the Lyme board, you can search on "symptom list". Or post a question over there to get a lot of feedback.

    It's also worth discussion with your doctor - although some are more open to the idea than others.

    My daughter (Lyme, Fibromyalgia, etc) has had all the symptoms you list. Arthritis and swelling of major joint is also a common symptom.

    - Lisa

  3. EricaCFIDS

    EricaCFIDS New Member

    I've been sick for 17 years and was diagnosed with lyme just a few months ago (and CFIDS a year and a half ago). I am not as severe as many, but have many difficult symptoms. I also seem to be slowly getting progressively worse, which scares me. I think with lyme, once you go untreated for a long time, certain things become irreversible. This is usually after many many years, but it's important to treat it so it can't make you so sick for life.

    I am a Mom of 2 and have a busy life. I struggle, but I manage through. I have a lot of fatigue and dizziness, cognitive problems (poor recall, bad short term memory), sleep problems at times, I'm irritable, low motivation, etc.

    When I saw my LLMD (lyme literate MD), he did a full exam and one of the things he had me do was close my eyes and try to walk a straight line. I tried and as I walked I started to fall over!! It was like I was getting a DUI test and totally failed!! He had me do a few more similar things and I did this on all of them. I was shocked, but it made sense. This is what happens to us when we have lyme. I've also slipped on my hardwood stairs and my in-laws and fallen twice in the last year. I thought I was just clumsy, but clearly it was my lyme.

    I think many people with lyme react differently. My neighbor was bitten by a tick (got the rash) and was severely ill within a few weeks, wheel chair bound and trips to the hospital, and even a picc line with ABX directly into his heart! You should hear the story!! He has been on ABX treatment for a year and a half and is 95% improved (and he never once has tested positive for lyme!!) I got a rash in 1991 and never had this response and have instead progressively gotten worse. It depends on which strain of lyme you have (there are hundreds), your genes, your immune system and if you have other co-infections and/or viruses, or even heavy metal toxicity.

    I would say that lyme symptoms range greatly! Seeing an LLMD will assure that you get checked out for all of these things and treated for them.

    Good luck!

    All the best,
  4. Slayadragon

    Slayadragon New Member

    Welcome to the board!
  5. bdancer

    bdancer New Member

    Thanks for the replies...

    I just read the book Lyme Disease by Linda Hanner and I was thinking geez my symptoms aren't that severe!

    My symptoms seem to be mostly on the inside...I look normal for the most part on the outside. The movements and twitches I get have been, so far, small enough that nobody sees or notices.
  6. EricaCFIDS

    EricaCFIDS New Member

    In fact I still look great! This used to frustrate me, but now I see it as a blessing and it helps to motivate me each day.

    People with lyme (for some odd reason) still look good, despite how they feel. I suspect that is the same for many with CFS/FM.

    Keep reading and learning and consider the right testing for lyme and the other co-infections. Better yet, find an llmd. It's best to get evaluated for everything.

    Take care and welcome,
  7. erica741

    erica741 New Member

    Welcome! You are doing the right thing by asking questions and looking for possible sources of your illness.

    I think you should get tested for Lyme. Igenex is considered the premier lab for detecting Lyme.

    See my post on the Lyme board here entitled: "Igenex Testing Information". You might want to see your test results before seeing a Lyme specialist (LLMD).

    If you want pursue Lyme more aggressively, then I suggest you make an appointment with an LLMD while you are waiting for your Igenex results. Despite your lyme results, an LLMD may diagnose you with Lyme clinically.

    Lymenet is a great resource for finding an LLMD in your area (I have the same username on there).

    Let us know if you have any more questions!

    [This Message was Edited on 08/20/2008]
  8. victoria

    victoria New Member

    My son is CDC positive but "looks" fine. His symptoms go up and down and did before being dx'd as well... but interfered with his going to HS or doing anything.

    Tick born infections represent 95% of vector/insect born infections and are numerous. One can have many infections from a tick without even having lyme. Tests for all are very unreliable, the best is the Western Blot by IGenex, and it's only 70% reliable. Some do not come up positive until taking abx for a while.

    These 'stealth pathogens' can go inside our cells anywhere in our bodies, including the brain and even our white blood cells, and hide out, plus form cysts to protect themselve from abx.

    that is why even the CDC says Lyme or ANY of these dx's should be made clinically, NOT based solely on the results of a test.

    Remember, lyme is a spirochete as is syphilis, except it is 2X as complex. Syphilis was called the 'great masquerader' as people showed up with so many different symptoms it was hard to believe it was all due to that one bug. Well, lyme is an even greater masquerader...

    good luck in finding a doctor. If you're interested in pursuing it, I too would go to lymenet as they have a private doctor referral section, that's how I found my son's doctor and saved a lot of time, money, and anxiety by doing so!

    all the best,
  9. cbs1234

    cbs1234 New Member

    Article by AC Steere, a lyme expert referred to often by lymies--note that he says lyme is way, way overdiagnosed.

    OBJECTIVE--To analyze the diagnoses, serological test results, and treatment results of the patients evaluated in a Lyme disease clinic, both prior to referral and from current evaluation. DESIGN--Retrospective case survey of prescreened patients. SETTING--Research and diagnostic Lyme disease clinic in a university hospital. PATIENTS--All 788 patients referred to the clinic during a 4.5-year period who were thought by the referring physician or the patient to have a diagnosis of Lyme disease. MAIN OUTCOME MEASUREMENTS--Symptoms and signs of disease, immunodiagnostic tests of Lyme disease, and tests of neurological function. RESULTS--Of the 788 patients, 180 (23%) had active Lyme disease, usually arthritis, encephalopathy, or polyneuropathy. One hundred fifty-six patients (20%) had previous Lyme disease and another current illness, most commonly chronic fatigue syndrome or fibromyalgia; and in 49 patients, these symptoms began soon after objective manifestations of Lyme disease. The remaining 452 patients (57%) did not have Lyme disease. The majority of these patients also had the chronic fatigue syndrome or fibromyalgia; the others usually had rheumatic or neurological diseases. Of the patients who did not have Lyme disease, 45% had had positive serological test results for Lyme disease in other laboratories, but all were seronegative in our laboratory. Prior to referral, 409 of the 788 patients had been treated with antibiotic therapy. In 322 (79%) of these patients, the reason for lack of response was incorrect diagnosis. CONCLUSIONS--Only a minority of the patients referred to the clinic met diagnostic criteria for Lyme disease. The most common reason for lack of response to antibiotic therapy was misdiagnosis.

    PMID: 8459513 [PubMed - indexed for MEDLINE]

    [This Message was Edited on 08/20/2008]
  10. munch1958

    munch1958 Member

    To me, the biggest thing I've noticed with Lyme patients is a change in symptoms. Does your pain "move around"?

    One hour my toe hurts and then the pain is in my knee. Then my back. Or my shoulder. The next day it's something else entirely.

    Change (sometimes from hour to hour) is a common denominator. Do you have multi-system symptoms?

    Never thinking all of my chronic illnesses were connected, I was seeing a ton of different doctors.

    A neuro for migraines;
    a cardiologist for chest pain;
    a gastro for GI symptoms;
    an ortho for GYN for joint pain;
    a pain clinic doc for pain;
    a GYN for endometriosis;
    a clinical ecologist for food intolerances and a PCP too.

    None of them ever put it all together as different facets of ONE problem.

    Lyme symptoms can vary from mild to severe. They can come and go in cycles or waves. There is no real pattern other than there is no pattern!
  11. frango2

    frango2 New Member

    I don't need to say anymore.
  12. cbs1234

    cbs1234 New Member

    The migrating symptoms are synonymous with many, many disease states, not just lyme. MS, Lupus, Reiters syndrome, and many, many others. In fact, I had the roving tendonopathies and roving neuropathies as a result of my reaction to levaquin.

    Roving and waxing and waning symptoms are not exclusive to lyme disease.
  13. bdancer

    bdancer New Member

    Thanks to everyone for all the input so far...

    and for making me feel so welcome here!!

    It's so refreshing to "talk" with people who are accepting and
    caring. I don't have anyone around me that understands...I'm sure you all know what that's like. pains/sensations/twitches do move around constantly.
    I have a 4 page list of symptoms I recently took to my pcp and she wouldn't even look at it. I asked if she at least wanted to make a copy so she could look at it at her convenience and she said no, that I should hold onto it and we will explore 1 symptom at a time! I have been sent to a cardiologist for the rapid/skipped heartbeats and he found nothing. Then I was sent to a pulmonologist because I said I
    wake up feeling like I have not slept at all and feel like I stop breathing at night sometimes and was having horrible dreams for awhile there. I am scheduled for a sleep study. When that is done, I'm to go back to my pcp to discuss those results and explore the next symptom...
    I feel like I'm getting nowhere and very slowly!

    I would like to post my symptoms list but I'm too tired right now and it almost seems redundant since it reads much like most everyone else's here...maybe I will put it in my profile when I have more time and energy.

    Once again thanks for making me feel at home here...I don't know how to describe how it made me feel to read these first replies...

  14. Slayadragon

    Slayadragon New Member

    Hi Linda,

    I think you finally hit upon a key difference between lyme disease/toxicity and mold poisoning.

    Lyme disease seems to have symptoms that move around a lot. I've heard that before.

    Mold poisoning seems to have symptoms that remain pretty constant over time.

    I've never figured out a way to distinguish before since the symptoms are quite similar. (The lyme co-infections seem to present with different symptoms.)

    But the moving around does sound important.

    Of course, just because symptoms move around (or if lyme is diagnosed) doesn't mean that mold's not also a factor.

    And just because most symptoms are constant (or if mold is found to be a problem) doesn't mean that lyme's not also a factor.

    It's good to have a sense of which one might be more important though.

    So, thanks!


  15. victoria

    victoria New Member

    but it is certainly something that DOES show up with Lyme and other tick born infections... and others as well. I would never suggest to 'stop' with a dx of lyme, as usually most have more than one infection, bacterial and viral.

    If I listened to articles like those by Steere, I'd never have had my son tested, as it's supposed to be so rare in the south... but it's not. He has also been tested for other pathogens, but tests are extremely unreliable - which again is why a good clinician is necessary.

    all the best,
  16. gapsych

    gapsych New Member

    Yes you could have Lyme. You could also have other problems that are not Lyme. The reality is that we on this board simply do not know. We can give advice, describe our symptoms and experiences but the bottom line is we are not doctors.

    Sometimes we want to focus on one specific thing causing our DD. However in reality this is not often the case. You have to look at the whole picture.

    IMHO, I would be concerned about your inability to walk and your sleep problems.

    Since your doctor wants to take one symptom at a time decide what your most prominant symptoms are as a starting point.

    I find keeping a journal of my symptoms, when, where, what time of day the symptoms are worse or if they are ongoing throughout the day. Also record your sleeping and eating patterns and any other pertinent information. You can make this data as simple as you want. Do what works best for you.

    I am sorry that the doctor would not look at the list. You always have the option to change doctors.

    When was your last appointment with your doctor? Have you had a complete workup?

    Do you feel comfortable with your doctor and the treatment you are getting.

    Why do you think you have Lyme?

    If your doctor says you need a lyme test, then go for it. It can't do any harm.

    Remember we are all here to help. But you are the one who has to ultimately decide what is best for you by looking at all the information. This board is just one piece of information, however pretty good information.

    It is not an easy task, is it?

    Take care. Keep us updated.
    [This Message was Edited on 08/20/2008]
  17. EricaCFIDS

    EricaCFIDS New Member

    Hi again,

    If you decide to look into lyme and rule it out (a good idea), then make sure to see someone who is lyme literate and knows what tests to order and how to read the results.

    Rarely does a person with lyme have only lyme! They have many other issues, like hormonal imbalances, active viruses, intense mold sensitivities, metal toxicity, co-infections and all of the typical FM/CFS symptoms.

    What is serious about any of these is leaving them untreated. Best to see recommended experts and thoroughly check yourself out. An LLMD is one suggestion and you can go to the lyme board or lymenet for help there. Others here on the board could refer you to someone in your area to help with some of the other issues too.

    It sounds like your primary doctor is not very open. I'm so sorry about that. So many of us have experienced that, but don't give up! We're here to help if we can.

    All the best,
    [This Message was Edited on 08/23/2008]
  18. EricaCFIDS

    EricaCFIDS New Member

    If you feel better taking any medicine (even ABX), then you know you have the right diagnosis! Don't let naysayers discourage you from looking into the possibility of lyme. It may not be the answer for you, but it's worth ruling it out. Why not?

    You will know the right answer by how you feel with treatment. I always say "listen to your body"!

    Also ask a lot of questions, do your research and get more than one opinion. Go by your gut and don't be afraid to look for answers.....

    Good luck!
  19. gapsych

    gapsych New Member

    You just stated that if you feel better with an ABX, you probably have Lyme.

    I have also heard on this board if you feel worse on an ABX then it is die off and you probably have Lyme.

    People with strep throat feel better with an ABX.

    Some people may get side effects from ABX such as nausea.

    The last two statements contradict the first two statements.

    I do not understand the reasoning.

  20. bunnyfluff

    bunnyfluff Member

    gap, let me try to explain this.

    Initially many people feel worse on Abx due to die off. These symptoms are fairly consistant:
    neck pain
    chest pain

    Probably a few others I have forgotten.

    But ultimately you "get" better..... feel better with this treatment. If you had mold or heavy metal, that would most likely not be the case.

    Many people that had previously been treated for MS are also responding to Abx treatments. They are thinking that some of those cases are bacterial.

    While the CFS/FMS people with high HHV-6, etc., seem to well on anti-virals, that never worked for me..... because my trigger was not viral, it was bacterial.

    So, lots of ppl say you "feel better" on Abx, but it won't be in the first week for most, b/c many have gone wrongly Dx'd for years, and the bacteria has a pretty strong foothold.

    And like I have said previously, there will be ppl that are "carriers" of Lyme just like Herpes, etc., that may never show symptoms, but may still have the ability to infect others.