FFC; has anyone w/lyme tried an FFC??

Discussion in 'Lyme Disease Archives' started by suexi, Dec 10, 2006.

  1. suexi

    suexi New Member

    and if so, how were the results?.... i am a bit reluctant to go to one of those places.. i am so sensitive to meds & i didn't like the way the girl talked to me on the phone; maybe she was having a bad day; but it just didn't give me a Very hopeful outlook on FFC's in general. btw, is that one of the symptoms of Lyme?(sensitivity to meds) im wondering if i have lyme & cfs. i've been sick for 5 years...i thought it was cfs up until i just got a positive from igenex last month. so does lyme cause cfs? does anybody know?? or vice versa? Are they actually 2 different illnesses....im so confused... thank you
    susan
  2. jarjar

    jarjar New Member

    sorry no one else is jumping in but seems traffic is down on this site. I have heard of people being diagnosed with lyme at the FFC centers but eventually most of them seem to move on to Dr's that are more experienced with lyme.

    Jay
  3. lagf

    lagf New Member

    JarJar is right. They are not lyme aware nor do their meds measure up. some of the meds are watered down versions which you do not need. Get a lyme doctor.
    CFS is a symptom of lyme, but can be caused by other issues. The key is your test which is positive to lyme. Ask on this site and others for a lyme doctor close to you.
  4. suexi

    suexi New Member

    oh wow, thats weird because, i was on a site, cant remember where that said if you have lyme, and gave the symptoms, so on and so forth then said "make your appt here on line" and i clicked on it and it said "FFC nearest you...etc
    im like, what??? nope, dont want to try an FFC.
    thanks for your replys
    susan
    xxx
  5. victoria

    victoria New Member

    with JarJar... altho I think Kellyann is still going to the one in Atlanta...

    But, just my opinion, I'd find the best LLMD that's closest to you. There are different varieties of Lyme, so a different abx may work better for you than what someone else does - my son has been on a variety of abx, some seemed to do nothing, while others were very obviously having an effect....

    so really a doctor has to be willing to try different combinations AND include Flagyl; and the doctor needs to be aware that you probably have a coinfection(s) even if tests don't show it, as reliability on those tests are very low.

    A good place to start educating yourself is to read the posts here, as this board isn't that old so it shouldn't take toooo much time; I really wish they'd put a 'primer' at the top as a 'sticky' like they do for CF/FM, but so far they haven't.

    Also you might do a search in the CF/FM Library here on Lyme;

    Also go to ilads.org, they have a lot of info there plus a lot of links for more info and to help find a LLMD.

    All the best,
    Victoria





    [This Message was Edited on 12/13/2006]
  6. hopeful4

    hopeful4 New Member

    Hi suexi,
    Before I knew I had lyme, I started at one of the FFC's out of state. At that time, they only gave me the Elisa lyme test, and tested me for other underlying infections. The lyme came back negative. I tested positive for a couple of infections, candida, low NK cells, and very low hormones.

    Fast forward about 8 months, and a new FFC opened up in my state, so I transfered. In those first 8 months, I had some improvements, but then would slide further downward. So, the new doctor re-tested me for lyme disease with Igenex, and it came back positive. Since that time, one year now, I've been in treatment with FFC for lyme. This doctor saved my life!

    I've been ill now for over 6 years, and probably became infected long before that. So, I expect that treatment will take time, and a degree of trial and error, since we are all different.

    The doctor I currently see is extremely informed about lyme disease, and the FFC uses an integrated approach with anti-biotics and pharmaceuticals, as well as herbals, supplements, and vitamins/minerals.

    I believe that at different FFC's you will find that doctors have different levels of knowledge and skill with regard to diagnosing and treating lyme disease. I am very happy at this time with my FFC doctor who has been seeing me for over a year.

    I had problems, at first, taking some of the medications, since I reacted so strongly to them. So, she adjusted dosages for me, or switched medications entirely.

    If I have problems or concerns, or if I'm going through a miserable and scary herx, I just call and get some guidance about what to do.

    Since I've now been on the full protocol for 6 months, and am seeing improvements, I am now stopping medications, one by one, very slowly, to see how I will respond.

    To answer your other questions:
    Yes, lyme can make you very sensitive to medications, vitamin/mineral supplements, and herbs. After one year of treatment for lyme, I am now much more able to tolerate medications, etc. that formerly made me sick.

    Does lyme cause CFS?
    It may well be one of the causes. I was diagnosed with CFS for over 5 years before getting the lyme disease diagnosis. My doctor said that I have them both. The lyme disease along with the other underlying infections, weakened my immune system just waiting for me to become overloaded, stressed, and weakened to take over.

    I will cut/paste you an article written by Dr. Holtdorf of FFC regarding the connection between lyme and CFS/FM.

    Best wishes in finding the help that you need.
    Hopeful4
    [This Message was Edited on 12/18/2006]
  7. hopeful4

    hopeful4 New Member

    Lyme Disease Link to FM and CFIDS

    Lyme Disease Link to FM and CFIDS

    This is from the Immune Support Library:
    ImmuneSupport.com Treatment & Research Information



    Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue
    ImmuneSupport.com

    10-03-2005 By Kent Holtorf, MD

    (Reprinted with author's permission)

    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease.

    The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst.

    Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease.

    Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy.

    A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

    More information about Dr. Kent Holtorf: www.fibroandfatigue.com

    ©2006 Pro Health, Inc. Copyright Policy
    By: http://www.ImmuneSupport.com


  8. kellyann

    kellyann New Member

    Yes, Victoria is right, I am going to the FFC in Atlanta. But only because the doctor there pretty much does work with me on what I want to try, like the bicillin injections. She did about do me in with all the antiviral medications she had me taking a couple months ago. I won't do that again. I was so sick. I am feeling much better on the bicillin shots. So I am hoping she will just let me stay on them for a good long while.
    Kellyann