I'm so confused, do I have Lyme or not?

Discussion in 'Lyme Disease Archives' started by Junegal, Aug 2, 2008.

  1. Junegal

    Junegal New Member

    Had my second appt with the LLMD (very well known and recommended, seems like a brilliant doctor)

    She said I was "exposed to Lyme" but I couldn't get a clear read on if I *have* Lyme. She told me at the first visit I sounded like CFS (which I was diagnosed with 1 year ago but was hoping that was wrong) and this visit she reiterated that many of my symptoms are CFS and not Lyme. She also told me I had an autoimmune problem where my immune system is attacking my body.

    My head is spinning because I still don't feel like I have answers. She did up my oral antibiotic (because I can't get out of bed without antibiotics) and will follow-up with me.

    I had a Spect scan done also and there is a "moderate decrease in cerebral cortical perfusion in a heterogeneous pattern"

    I thought Lyme was the end all be all and here I sit still sit not closer to answers/feeling better.

    can anyone shed some light for me?
  2. mrdad

    mrdad New Member

    I'm not clear as to what antibiotic protocol you are on and
    what your Doc's intentions are? Can you give me some indication as to what has been happening with you? The Lyme
    Group here has been pretty slow the past few weeks. (?)(?)

  3. Junegal

    Junegal New Member

    I started almost two years ago with a sore throat/sinus infection. Responded to antiobitics, but I couldn't stay off of antiobitics. It hit again within days. Did about 23 rounds of antiobitics in 1.5 years. Couldn't get out of bed without them.

    Severe exhaustion. Not tired I want to sleep, tired that my body couldn't move. Couldn't walk even the mall (I was a big time walker before all of this) If I have a day where I feel "okay" to walk, I will pay dearly the next day. Where I can barely move or the sore throat/fever hits me because I did something physical.

    I have high EBV, Parvo and HHV6 numbers.

    She put me on Biaxin (which I like the best, I have responded to it for 1.5 years, though eventually it'll stop working I'm sure)

    Pain, other than my throat, is not my main problem. I have some in my hands and feet and sometimes my hips but it really wouldn't send me to the doctor, it isn't that bad.

    Though she did mention Lyme, just didn't seem to think that was the root of *all* my causes from the impression I got. She said some of my symptoms and problems are Lyme-related, hence the continued antibiotic. But she talked a lot about my CFS as though that is the primary cause for my symptoms. At least that is how I understood her, I could have misunderstood.

    I actually respect her more for looking at the whole picture, rather than just saying "Lyme" and doing massive Lyme protocol just because that is her speciality.

    I just wanted to have more closure after this visit and still feel like I am hanging in limbo, does that make sense?

    Thank you for your reply and any light you can shed.

    Please excuse any typos, don't have my glasses on.

  4. mrdad

    mrdad New Member

    You know, I hear that "CFS" often but have never had it ex-
    plained anywhere what it is? Seems like just a "catchall"
    point for the unexplained. I don't feel that CFS is one and
    in itself a "disease". I feel it is just a "symptom" that
    can be attributed to SO many diseases and medical conditions.
    There must be a SOURCE for the CFS and whatever that Syndrome,
    is the actual ailment. I have CFS, but it is a resultant of
    my Lyme, Hemachromatosis, and Liver disease.

    You are fortunate to have found a Lyme Doc and if indeed SHE
    is experienced, should hopefully be of help. I can associate
    with much of the pain etc. you detail. Lyme can be a most difficult thing to treat. Doxycycline is the usual beginning
    protocol at about 400mg's a day for 28 days. I'm sure your
    Doc is aware of this however.

    LIkewise, it is not unusual to have other infections oc uring concurrently as well as persistant viral infections.
    You may also wish to do a blood test for Hemachromatosis
    and iron overload disease that can cause almost identical
    symptoms. A simple blood test can determine iron-overload.
    It is one of the ten most common and least diagnosed of med
    problems. It took them a year or more to find mine after
    constant complaints of Fatigue!

    I do suggest that you visit other Lyme Sites on the WEB.
    Many of the people here do so as well. Let's stay in touch
    and hopefully learn and make some progress against this
    medical issue!


  5. Jupiter7

    Jupiter7 New Member

    I am also confused by what your LLMD means. If you have Lyme and she's still trying to label you with CFS, that sounds very weird to me, since the symptoms overlap so much.

    I know it's so hard to not have clear answers. I am in a similar position. Saw LLMD 2xs and still not sure if I really have Lyme. I'm still on trial of abx. I may retake my Western Blot at some point, depending on how long he is willing to treat me "clinically".

    Good luck, and try making a list of questions for your next visit. Are you keeping a log of your symptoms while on abx?
  6. munch1958

    munch1958 Member

    The immune suppresion outcome of Lyme borreliosis is CFS! This means our bodies can no longer control pathogens so every day viruses, bacteria, and fungus that everyone is exposed to and manages to keep under control grow inside us.

    (See what Dr Diettrich Klinghardt has to say on this topic in the movie "Under Our Skin".)

    They also learned this from the Lymerix vaccine which was taken off the market. It seems the vaccine caused the immune suppression outcome but without the actual spirochetes.

    There are many outcomes of a Lyme Borreliosis infection. Which autoimmune disease does she think you have? I'm not clear on what your doctor is talking about either. Not all LLMDs are created equal.

    I'd be shocked if a Lyme diagnosis is the "end all be all thing" that you mentioned. Most of us end up treating all sorts of other issues especially hormone problems. Have yours been checked?

    What about heavy metals? Many Lyme patients collect those too and require chelation therapy.

    What about methylation? I had high homocysteine and high cardio CRP which is a sure sign of inflammation. My levels are now normal with B12 supplementation.

    I am being treated for multiple hormone deficiencies (growth hormone, thryoid, sex hormone and adrenal.) I need large amounts of DHEA and small amounts of hydrocortisone plus estrogen and testosterone pellets, and melatonin for sleep.

    I'm also on a Vitamin B12 shot every day and 5,000 units of Vitamin D. I was very low in both B12 and D which points to GI issues. See Barron's Gut Dysbosis.

    Victoria has a good list circulating on the main CFS/FM board of other issues that need to be checked.

    You also may want to look at Dr Kent Holtorf's Cycle of Dysfunction drawing here in the library. Following that drawing and slowly ticking off the boxes and issues one by one has helped me tremendously.

    If you have any band activity on your WB then most likely you "DO" have Lyme. There should be "NO" bands active on your test.

    Unfortunately, there is no test to say when to stop treatment so we just have to rely on symptoms.

    I have found that each time I go off (and then back on)
    Abx the number of symptoms are much less as is the severity. [This Message was Edited on 08/08/2008]