A question about bites and an update

Discussion in 'Lyme Disease Archives' started by ckball, Jul 11, 2006.

  1. ckball

    ckball New Member

    Hi all,

    I have received all my test results, Lyme neg,diabetes neg, muscle emzmes neg, stress test normal.

    I do feel better than I did a month ago, I just finished my 3 week antibiotic (Kefelx). I can only hope this continues. I still have to take breaks and not overdo, but it is a great improvement since the evening I spent in the ER.

    The tick bite, I know a tick has to be attached for 24 hours to transmit lyme. But what about the co-infection. Are the bateria ON the tick and you can get it by picking a tick from you or your animal. Do ticks bite just the one time and latch on? Or do they bite and move on to another area to latch to.

    I was sicker in the month of may first of June than I had been in a long time. I was very scared at one point with the dizziness, fatigue, brainfog, chest pain, palpitation. I am use to this but this it was extremely exxagerated than my normal CFS symptoms.

    I live alone and was more worried about my dogs, so I called a freind to tell her what was going on , she is a nurse, she said go to the ER, I said I would the next day if I wasn't any better, but I wanted her to call me if I didn't call first. I am very isolated and could be here for several days before someone realized there was a problem. I felt very vulnarble for the first time.

    I am very glad all my tests were normal, still puzzled about the blood sugars but am going to monitor that daily now. Thanks for support here-Carla
  2. minimonkey

    minimonkey New Member

    ckball --

    Two (okay, three) questions --

    Which lab ran your Lyme test? What type of test was it (ELISA, Western Blot, etc.)

    How long have you had the CFS diagnosis?


    Some info -- there is a lot of controversy about whether a tick needs to be attached for any specific length of time in order to transmit disease. Lyme testing is not all that accurate, and a lot of folks don't get positive results if they have been sick for either too short, or too long a time. Also, many labs have very stringent and questionable criteria for determining negative vs. positive results.

    One possibility that springs to mind is that your CFS may actually have been Lyme all along -- if that is the case, your body may have stopped producing antibodies... that happens. A recent bite could have re-infected you, or given you a co-infection that made your symptoms worse.

    As for co-infections -- they are in the tick, not on it -- they are transmitted by the bite. However, nymphal ticks are so tiny that you could have been bitten before and never known you had a bite -- that happens, too.

    I hope that helped a little, at least -- glad the keflex is helping and that you are feeling better than you were.
  3. ajp

    ajp New Member

    Hi,

    I am glad to hear you are feeling better. I do have to say that my Lyme doctor tells me that Lyme is a clinical diagnosis. As far as the CFS goes, I was diagnosed with it in my late twenties and now my Lyme doctor believes that it was Lyme and I have probably had it for almost 20 years!!!!

    So please, don't want to over step my bounds here, but definitely continue to look into the Lyme diagnosis. Most LLMD's do NOT believe in CFS and Fibro, they are symptoms of Lyme. The way I understand it( and I am new to the Lyme disease) but that the bacteria runs in cycles, which explains the symptoms waxing and waning. Victoria, am I right in this? You are so educated about Lyme.

    Again, glad you are feeling better and don't want to come across as pushy....but I am only trying to help and share what I have learned so far about Lyme as it pertains to me.

    Take care!

    Love Mindy
  4. victoria

    victoria New Member

    Hi Carla,
    I'm guessing some (or a lot?) doubt and uncertainty remains in your mind about the possibilities... also, have you been tested for Mycoplasma or C. Pneumonia?

    And again, as others have said and I'm sure you keep reading, tests can be 'normal' for lyme as well as the other 'stealth pathogens', especially if you've had it for a while... and the tests for the common co-infections are even more unreliable. LLMDs treat based on your clinical picture, and have reported finding that pts treated for a while (more than a couple months anyway) will often then show up positive on various tests.

    It can be at times somewhat hard to determine what is an allergic reaction or a herx, and of course it's better to err on the side of safety. There are also some patients tho that I've read about who get a very intense herx from the beginning where it is difficult or impossible to endure. I've read some LLMDs use Remicaide then, but of course that has its side effects possibilities too.

    If you noticed that you felt better after taking the abx, personally I'd want to take it or another abx longer to make sure that you did get it all... but probably would go to an LLMD, even if you have to travel.

    The LLMD I take my son to is over 200 miles away; I have seen pts there who fly in from Europe, as well as from many many states a very far way from NC.

    all the best,
    Victoria

  5. ckball

    ckball New Member

    Minimonkey- I have no idea what kind of test it was. It was ordered by the ER dept when I was really sick and ended up there.

    I had been tired since I was a teen, I had typhoid fever at 15 was in the hospital for 3 weeks. Of couse, I have IBS too' I also had most of my thryroid removed at 16.

    I got the FM/CFS diagnoses in 2002.

    I do not remember having exsposure to ticks until last year. Always lived in the city and not much of a camper, hiker, etc. so it would suprise me if it has been Lyme all this time.

    Mindy- you don't come off as pushy at all. I m still following the Lyme/co-infect route. I know my body and if that was a CFS flair, than that was the worst one ever, and I have had my share.

    I'm still keeping a check on my blood sugars too.

    Victoria - No I have never been tested for Mycoplasma or C.Pneumonia, never heard of the second one. I looked in to
    mycolplasma when I first came here in 2003 but I didn't feel like that was it. But I may go back and read some more on it.

    I do not think there is a LLMD Dr within 300-400 miles and unless I got an positive test, I would not put myself thru that.

    If the May symptoms return, I will go back on the abx in a flash. It is just so hard to pin down one dxs for one that has so many dds.

    Thanks again for all you do here for everyone - I'm sure I can speak for everyone and it is appreciated by all- Carla
  6. minimonkey

    minimonkey New Member

    Victoria is referring to an infection called Chlamydia Pneumoniae ( I think I spelled that right) -- it can become chronic and can cause symptoms almost identical to lyme. Treatment is abx, though I don't know which ones or for how long - my sense from the little reading I've done on it is that it can be rather difficult to eradicate and may require long-term tx.

    There is some evidence that ticks may not be the only insect vectors to transmit lyme -- it has been identified in mites, mosquitoes, etc. but it hasn't been proven one way or the other whether they can transmit it to humans -- some folks believe strongly that they can. There are also documented cases of mothers transmitting lyme to their children either in utero or through breastfeeding.

    Ticks are sneaky -- they get on pets (yours or other people's), they are also carried by mice -- so it is very possible for a city dweller to have a bite and never know it.

    There are so many different infectious processes that can contribute to chronic illness! It can be overwhelming to think about. Since you responded so well to the keflex, it certainly sounds like you have something bacterial going on, at least as part of the picture.
  7. victoria

    victoria New Member

    is cpnhelp.org

    I always hate to use the word Chlamydia as everyone immediately thinks of the STD... eyebrows go up immediately lol!



  8. ckball

    ckball New Member

    I did go read on mycoplasma and the CP.Now my head is spinning.

    i took my last abx on Mon and I have been in fibrofog and fatigue setting in already.

    I have several rounds next week and the following week, EMG, psyco Dr and blood work for hemochromtosis and follow up at PCP and the Infectious D DR.

    What questions should I ask these different Drs. With technology as advanced as it is, why can't there figure out a proper test for these nasty little critters that invade our bodies?

    I am so tired today, rested yesterday but it didn't help. I guess the abx may be the trick for me but which one since I am allergic to tetracyclines.

    Thanks again for so much help, you have been a tremndous help, Carla
  9. minimonkey

    minimonkey New Member

    There are so many abx out there these days! Even if you can't take tetracyclines, there are other broad spectrum abx that work just as well, and some actually have fewer side effects.

    I used to think I was allergic to *all* abx - this had to do with a series of "allergic reactions" I had when I was battling the never-ending, 9-month urinary tract infection years ago -----

    Turns out, I am NOT allergic to most of them -- I was herxing, and I had no idea I had lyme at the time.

    That said, you may genuinely be allergic to the tetracycline drugs.

    The only abx class that I have been afraid to try again is the cephalosporins, because I had a *really* nasty reaction to Keflex years ago -- now, I have no idea if it was an allergy or a herx. I know from recent experience that herxing can be one of the worst things a person can have to endure!

    I, personally, have decided not to stress too much about possible *bacterial* co-infections -- I'm taking so many abx that they are all going to get knocked out eventually anyhow.

    Protozoal and viral co-infections, however, require different treatment -- so I am putting more energy into those.