Diagnosed by LLMD...I'm now officially in the Lyme club

Discussion in 'Lyme Disease Archives' started by erica741, May 5, 2008.

  1. erica741

    erica741 New Member

    (Note: Most of this post is a cut-and-paste from a reply to another post from Liesandmorelies).

    I saw Dr.H in Malibu on Saturday, and the diagnosis is Lyme and likely babesia too. I saw both Dr. H and his naturopath collegue for that office.

    My appointment was quite long, and they did a thorough exam and discussion of my symptoms and medical history.

    But what really surprised me was that they diagnosed with lyme at the BEGINNING of the appointment based solely on my Igenex results. They said that based on positive IgM (with the bands 30/31 confirmation), I definitely have active lyme. They also think that based on my fever and flu-like symptoms, I also have babesia.

    Just over a week ago, Dr. Montoya tested me for babesia and many other tick-borne diseases (including lyme), and everything came back negative. Dr H and his collegue said most labs are just as unreliable for other tick-borne diseases as they are for lyme, so they are re-testing me through MDL.

    They are also re-testing my lyme through MDL, which I'm really happy about because I've wanted to get a 2nd opinion from another lyme-reliable lab besides Igenex.

    They started me on zithromax right way. I'm supposed to start at 250 mg twice a day and then try to tolerate taking all 500 mg once a day.

    In ten days, I'll start taking minocyline - 100 mg twice a day.

    I'm already prepared for a herx, and I've seen on some posts here that the minocyline can be especially rough. I'm actually hoping for a herx reaction because that will further validate my diagnosis and indicate that the abxs are working for me. I've already gone through feeling like I'm dying while herxing on Valctye, and have been assured that any abx herx won't be nearly as bad.

    One of my biggest questions right now is: what vitamins and supplements should I be taking? I already take a mult-vitamin, calcium/magnesium combo, fish oils, and probiotics. I know some of these interact with the abx's, so planning what I take with each meal will a challenge.

    With all the abx I am taking, I am especially concerned about taking the proper probiotic. I've been taking Bio-K Plus, but Dr. H's naturopath said that probiotic pills are better. I already tried Primal Defense by Garden of Life a few months ago, but it gave me terrible bloating and gas, so I switched back to Bio-K.

    I'd appreciate any advice or recommendations.


    [This Message was Edited on 05/05/2008]
  2. mrdad

    mrdad New Member

    I addressed this issue concerning Igenex to you on the Post
    initiated by "nomorelies". Anywho, I'm glad that you got
    the results on your Lyme Test. I mentioned that my CNP was
    a first enamored with the Igenex Lab after having spoken with the Lab Tech there that processed my blood work. On my return
    appointment to her, she changed her attitude concerning Igenex
    inferring that their credibility was in "question"! A total
    turn about from our previous appointment. I feel that her
    "overseer" Doctor influenced her in a negative way and now
    believes that my "positive Lyme" diagnosis from Igenex is
    unreliable. Whatever. I know that I can no longer trust my
    care to her. Don't think she believes I have or have had
    Lyme! I had to explain to her what "herxing" meant! She brushed the concept off as if it were nonsense.

    Now I must decide how I'm to handle my present situation as there will be no attempt by her to treat my Lyme. I feel that even Montoya's statement to you may have been a combo
    of ego and "politics". One thing I learned for sure with my
    Poli Sci degree was that "everything is political"!!! Don't
    think my CNP or Dr Montoya are showing "scientific method"
    proper adherence and professional respect. I see NO credible
    scientific argument against Igenex. They are an accredited
    lab and highly respected lab in their field. I may have "Questdiagnostics" do a Lyme test as a means of comparison.
    Interesting to see if they come up with the same results?

    Please take care!

  3. erica741

    erica741 New Member

    Sorry you are getting such the run-around from your doctor. That sounds frustrating and also down-right annoying.

    Are you seeing an LLMD? I get confused with your posts because I don't know what a CNP is. My educated guess is that it is some type of nurse practioner?

    Whoever you are seeing, it sounds like it's time to see someone else.

    Good luck!

  4. munch1958

    munch1958 Member

    Why our immune systems collect pathogens other than Lyme?

    This excerpt from the Stephen Buhner book "Healing Lyme"
    (page 25) describes exactly how the immune system is disabled.

    "During feeding, the tick alternates between taking blood and releasing saliva into the wound. This saliva, from the moment of attachment, as it enters the blood and surrounding tissues, releases into the host body a complex blend of powerful, pharmacologically active compounds. They are designed to counteract the three main host immune defenses that arise immediately upon the attachment of something like a tick.

    These are hemostasis (blood coagulation, platelet aggregation and vasoconstriction), inflammation, and immunity (innate and acquired.) Tick saliva chemicals are highly bioactive. While only a few of the hundreds of chemicals in tick saliva have been identified, many of their bodily targets have been.

    The antihemostatic compounds inhibit platelet ADP (adenosine phosphate), prostaglandin receptor, prostacyclin receptor, and thrombin. The anti-inflammatory compounds inhibit anaphylatoxins, histimine and bradykinin.

    The anti-immune compounds inhibit the alternative pathway of the complement system, neutrophils, splenic T lymphocytes, B lymphocytes, interleukin 2 IL-2), IL-8, macrophages, nitric oxide, interferon alpha, interferon gamma, and immunoglobulin G (IgG).

    This broad range of anti-immune activity has a potent impact on host-immune defense. To get a very brief idea, IgG plays an important role in host defense responses to infection. It protects tissues from bacteria, viruses, and toxins.

    IgG neutralized bacterial toxins, activates the complement immune response, and enhances phagocyctosis (white blood cell activity against disease organisms.) And this is only one part of the immun response that is inactivated or inhibited by tick saliva.

    The Lyme spirochte takes advantage of the tick's release of these compounds to infect the host. For example, studies have found that if the levels of interleukin-2 and interferon gamma in the lab mice are kept high (counteracting the tick saliva chemicals) the rate of infection drops precipitously.

    Tick saliva also inactivates one of our most potent innate immunities to disease - the alternative complement system. When we are born we have what is called innate immunity. Over time we also have immunity to diseases with which we have been infected - so called acquired immunity. One of the most potent elements of our innate immunity is called the complement system. This part of the our immune system can be activated through any of three pathways: the classic complement pathway, the lectin pathway, or the alternative complement pathway.

    Each pathway is useful for dealing with different kinds of microbes. The alternative complement pathway is the part of our innate immunity that can deal with borrelia spirochetes. In fact, Lyme spirochetes cannot gain a foothold in a host with an active complement immune system where the alternative pathway is uninhibited. The commplement system kills them immediately.

    Componenets in tick saliva specifically inhibit this part of our innate immunity. Lyme spirochetes take advance of the alternative complement-inhibiting factors in tick saliva to seek out unprotected sites in the host body where they can take root and grow.

    Lyme organisms use many parts of the complex biochemical makeup of their tick hosts to facilitqte their infection of mammals upon which the tick happens to feed.

    The infection of the body by Lyme spirochetes is enhanced as well if the new host already has low immune function. The degree of infection and how severe symptoms become are directly dependent on host immune strength or weakness.

    In addition, a health host-immune defense also stimulates antibodies to tick saliva and inhibits future tick attachment. Anti-tick-saliva antibodies cause tick rejection before much feeding can take place. The higher the immune system response the less able the tick is to attach and feed and the lower the rate of Lyme infection in those who are exposed to an infected tick bite."

    I believe that once the immune system is disabled by the compounds in tick saliva then we become the host to a bunch of pathogens. Kind of like they are having a Tupperware party in there!

  5. munch1958

    munch1958 Member

    My protocol is in my profile. I am on lots of stuff for Lyme and coinfections and other health conditions.

    I have 6 of those pill box strips and sort my meds once a week. It used to take an hour. Now I can do it in about 15 minutes.

    Buy those EZY-dose bags at Walmart or other drug stores. It's a little ziploc bag for pills and you can write on the label.

    I have one pill locker for:

    Upon first waking up -- or before breakfast for pain meds, thryoid & hormones (say between 4-6 AM)-- this I keep on my night stand;

    a baggie for 2 pills taken one hour before breakfast also on night stand;



    afternoon hormones and pain meds;

    dinner and;


    Label your meds and supplements with a Sharpie as to how many to take and when to take plus what to avoid taking it with. Then you won't forget!!!

    I also have a MS-Word document catagorized with all of my meds and the main diagnosis or reason I'm taking this
    item. I keep a copy in my purse, in our car, motorcycle and airplane. This comes in handy as there's too much to remember.
  6. mrdad

    mrdad New Member

    Yes, a CNP is a Certified Nurse Practioner! She is very

    qualified in gen., but apparently I'm her first Lyme Case. I

    haven't seriously attempted to find a LLMD yet as I am on

    Medi-Cal via my "unrelated" disability. This necessitates

    that I find one willing to take on a Medi-Cal patient. That

    may be nearly impossible. (?)(?) My best bet is to find

    someone on a referral at UCSF Hospital. Going to need some

    delicate intervention through an onbudsmen to achieve this,

    if at all. Are you presently in the City or down in Malibu?

    Hope you are doing well and feel much better soon!

    [This Message was Edited on 05/11/2008]