FFC 2nd Visit - Test Results

Discussion in 'Fibromyalgia Main Forum' started by toronto133, Jan 3, 2006.

  1. toronto133

    toronto133 New Member

    I went for my 2nd visit at the FFC Detroit. As a previous post detailed - I did not particularly hit it off with the doctor there. This appt was fairly quick with the Doctor -30 minutes and I realized that there were some tests that we didn't cover.

    The tests showed:

    -Lyme with 3 bands on the Quest test. I asked for a new test at Igenex and he agreed although he said I was the first person to be tested through Igenex at their office.

    -High Parovirus, High EBV, High HHV6

    -Chlaymdia Pnuemonia (sp?)

    -Low NK cells, low pregnenolone

    Being treated with minocycline, valtrex, nystatin, plus samento, burbur, mushrooms, lumbrokinase and all the other stuff I was aleady taking.

    I do feel very worried that I passed Lyme on to my young children while pregnant so I am going to try to find a Lyme resource locally.

    Since the valtrex is so expensive I also need to find a way to get my family physician here in Toronto to write a prescription so my insurance will cover it. If I buy in the U.S. it is not covered. I have already spent so much this past year in the U.S. on docs, tests, medication that I am not sure how much longer I can continue to do it. (I'm sure many of you have a similar story.....)

    Happy New Year

    Denise
  2. karatelady52

    karatelady52 New Member

    Denise,

    I hate to say, welcome to the lyme community. At least now you know what you're up against and can begin treatment.

    Lymenet dot org is a great website full of information. They have a lot of newbie material on there and the folks are very knowledgeable.

    Maybe I'll see you over there.

    Sandy
  3. bioman85

    bioman85 New Member

    I too go to the FFC, and they told me I should take the Lumbrokinase. However, at the dose they wanted me to take it would have been extremely expensive, so I asked for an alternative. They said taking Vascuzyme would yield the same benefits, and at a much lower cost. Maybe if cost is a problem you could take this route!

    Good luck,
    Chris
  4. GwenGlo

    GwenGlo New Member

    Being from Kitchener - Waterloo area, I'm interested in your FFC experience. I am thinking of going to the FFC in Cleveland. I had planned to go there even before I read about your less than 'positive' experience because my sister lives in Ohio and I would go from her place. It is the money that is part of the issue for me. I had been to the Environmental Clinic at Sunnybrook last year and what a Mickey Mouse operation!!...(compared to the things people are saying about the FFCs). Talk about wasting the taxpayer's money! I would like to know how long you keep going to FFC? Do you eventually switch over your prescriptions etc to your Canadian doctor? That is the part that I can't do because I can't talk to my family doctor as he is very hostile to me since I asked him to refer me to Sunnybrook. You know I can't change doctors and this one would not do any follow up support etc. So, I need a bit of clarity on how to proceed. Your postings really help. Thanks. Gwen


  5. GBHope

    GBHope New Member

    I am very interested in your progress as well, as this is probably the place I would go to or if need be, Cleveland, but Detroit is closer. What tests did you mean that he didn't cover? Have you ever been exposed to Lyme that you know of? Sorry, just wondering for own personal food for thought. Also, how much out of your own pocket did all this cost if you don't mind my asking? I know they have a credit program you can go through, but I don't want to go into debt more than I am.

    Ginny (GBHope)
  6. toronto133

    toronto133 New Member

    Thanks for the advice Sandy and Chris. I'll keep you posted Konrad.

    Gwen, I have had a really hard time coordinating care in Canada with the U.S. doctors I have seen this year.
    For example, I just realized that the one prescription that I got in Detroit is only for a month and the refills are there. And the compounding pharmacy that the FFC uses for Nystatin called to tell me they don't ship to Canada. The logistics are hard!

    If there was any support in Canada it would be much easier. However, my experience with GPs seems to be a negative attitude toward Canadians seeking care in the U.S., and a lack of familiarity with the treatments and tests. Also, the overwork of family doctors in general seems to make them adverse to dealing with anything complex. I really dislike being perceived as a bother so I hate going into my new GP.

    I made 5 trips to the Cleveland Clinic this year (not the FFC) and I had a hard time even getting prescriptions written here based on the recommendation of the specialists that I saw there. Naively a year ago, I thought that if the Canadian system wasn't able to be of any help that at least they would support me spending my own money and going to the States...wrong!

    Anyway, I hope you can learn things from my mistakes! If you are thinking of the FFC, I think you can get some of the tests done here but you do need a supportive family doctor. Can you find a new one?

    I also have a sister in Ohio.

    Take care,

    Denise
  7. toronto133

    toronto133 New Member

    About the tests I meant that he didn't discuss all of the tests that were done - so maybe he didn't have them all - not sure why. As far as costs go, it is not inexpensive with the lab costs. I don't really like to think about how much I spent - but it will have been 3-4,000 US at that FFC.

    I will have to say that I still don't feel completely comfortable with my experience yet - so I don't want to endorse or deter anybody from going. Time will tell I guess.

    One thing that I found difficult was that he did not address any of my sleeping problems so I am left with the conclusion that I still have to see a Rhuematologist in the US to help with that. My expectation was that the center would provide comprehensive treatment. Also, the 30 minute appt left me surprised given that I felt like I still had lots of unanswered questions (they told me I would have an hour with the doctor). And a weird thing was that the nurse told me that I caught the Parovirus from a dog. So, I still have some reservations about going there.

    Take care,

    Denise
  8. GBHope

    GBHope New Member

    Did you have insurance that would cover the cost of the lab tests or did you have to use credit? I know they have a credit program there, but like you, I want to see some really good results before I try something like that. Right now I am working with my chiropractor and think I have seen some results, but to soon to tell. I just want to feel a little bit better. When do you have to go back or do you? Just out of curiosity, did you have to pay over $900 since you are out of town. That's pretty steep. I'm not saying it is not necessarily worth it, but I have a family to support too. They should find a way to make it more affordable. I wish you the best of luck and will watch and see if this works for you. I remember when I first got sick in 1995, everyone's problem was candida. Now it seems they are finding problems with everyone with Lyme. This is definitely interesting.

    GBHope
  9. LISALOO

    LISALOO New Member

    I'm glad they are sending you on your way to health. I got to Cleveland, and I was wondering if they told you how to attack the Parovirus. It's the only virus or bacteria that came up on mine, and the dr. said the only treatment was to get my immune system running better to defeat it.
  10. Bailey-smom

    Bailey-smom New Member

    would actually tell you that you caught parovirus from a dog. It took me 2 seconds on-line to find this:

    This virus infects only humans. Pet dogs or cats may be immunized against "parvovirus," but these are animal parvoviruses that do not infect humans. Therefore, a child cannot "catch" parvovirus from a pet dog or cat, and a pet cat or dog cannot catch human parvovirus B19 from an ill child.


    I had to look because we raise dogs & I did not think it was possible but I had to check anyway. You would think a nurse in this type of clinic would know this.

    I hope they can help you.

    Kelly
  11. yesnettv

    yesnettv New Member

    Viruses can mutate and cross between species.
  12. toronto133

    toronto133 New Member

    and found that the human Parovirus is confined to humans. I know my kids have had it in the past - the doctors call it "Slap Cheeks" or Fifth Disease. (also we don't have a dog!)

    As far as treatment, I think the Valtrex was supposed to help with all viruses. I have been working hard on my immune system the past 6 months so I was disappointed to learn there were so many viruses lurking there.

    Thanks for the conversation!

    Denise
  13. karatelady52

    karatelady52 New Member

    I can't believe he didn't talk to you and and treat you for sleep problems. On my first visit my doc put me on Xyrem.

    I would call and tell them you need something for sleep. That is a very important part of the protocol.

    Sandy
  14. toronto133

    toronto133 New Member

    I think I am really poor at expressing what I need when it comes to doctors. He did ask me how my sleep was and I told him it was ok sometimes and really bad at other times. He must have thought that this was good enough. However my current regime (Soma and Melatonin) requires a prescription that I got from a rheumatologist in Cleveland. This doctor was kind enough to give me a long prescription - but what do I do when I run out? I was really hoping to pass the ball to the FFC.

    Still feeling very nervous about getting enough treatment. For example, is 3 months of minocin enough to cure lyme? I received no clear view of how my treatment would progress and I don't want to end up worse than if I received no treatment. So my comfort level is pretty low.

    Thanks for your reply.

    Denise

















  15. hopeful4

    hopeful4 New Member

    Hi Denise,
    I'm sorry that you had such a bad experience with the Dr. at Detroit FFC. That is not how you should be treated, and calling the corporate office to let them know what happened is an option for you.

    I started my FFC treatment in March '05 with Dr. J. in Cleveland. I was treated very well, she took 1.5 hrs. with me on the first visit, and went over my record in detail. She is extremely knowledgeable, and caring, and you may want to consider transfering your treatment there. Since March, I've switched to Seattle which is near where I live, and I'm very happy there.

    The Lyme DX is bad news/good news! No one wants to have Lyme, but now that you have the DX, it is treatable. I've also got it.

    The treatment for Lyme is complex, and can take a long time. I don't think anyone could predict how long treatment will take for a particular person. There are many factors involved. The idea that 3 months on meds would cure chronic Lyme is not very realistic.

    Compounded Nystatin: I've read that some at FFC are using this, but don't know why. Nystatin can also be purchased at a regular pharmacy with a prescription. So if you are not happy with using the compounding pharmacy for that, just request the RX be sent to a regular pharmacy.

    Sleep: This is one of the first things the FFC wants to see stabilized. It is during your sleep that your body renews and heals. Please contact the Dr. about this concern.

    Canada has the Canadian Lyme Disease Foundation at canlyme.com Have you checked that out? Perhaps through them you can locate a Lyme Literate Medical Doctor in Canada.

    Another great resource is lymenet.org

    Take care and wishing you the best,
    Hopeful4
  16. hopeful4

    hopeful4 New Member

    Hi again Denise,

    I'm going to cut/paste some info for you. Hope it helps.

    How your treatment will progress is something you should know! The following is the approach used at the FFC. This is the general overview:

    Treatment needs to be individualized, so phases may occur in different orders and multiple phases are often done simultaneously, but simply put these phases can be broken down as follows:

    1. Stabilize the patient by addressing pain and sleep disturbances;

    2. Promote energy by enhancing the powerhouse of each cell, the mitochondria;

    3. Balance hormones by evaluating hypothalamus and pituitary function;

    4. Enhance immunity and treat underlying viral infections;

    5. Address unique etiologies such as neurotoxins and coagulation defects;

    6. Provide each patient with an individual maintenance program with the minimumally necessary medications and supplements to assure absence of symptoms.
  17. hopeful4

    hopeful4 New Member

    This is also from the FFC. The last two paragraphs talk about treatment for Lyme Disease. This also may help clarify your concerns about how treatment will progress.

    Lyme Disease link to FM and CFIDS 12/17/05 09:13 AM

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue (From the Fibromyalgia and Fatigue Center)


    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.


  18. hopeful4

    hopeful4 New Member

    Treating Chronic Lyme, Dr. Burrascano

    Reposting this for you Denise. Dr. Burrascano is considered the foremost doctor in U.S. on Lyme and has been treating Lyme patients for 30 years.

    You can find his papers on the web with a google search or on lyme sites. Especially important is his "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses". ;-}

    TREATING CHRONIC LYME DISEASE

    J. J. Burrascano, MD April 24, 2004
    Board Member of International Lyme and Associated Diseases Society
    East End Medical Associates, P.C.
    East Hampton, New York

    TYPES OF LYME DISEASE
    . Early Lyme Disease ("Stage I")
    - At or before the onset of symptoms
    - Can be cured if treated properly
    . Disseminated Lyme ("Stage II")
    - Multiple major body systems affected
    - More difficult to treat
    . Chronic Lyme Disease ("Stage III")
    - Ill for one or more years
    - Serologic tests less reliable
    - Treatment must be more aggressive and of longer duration

    DEFINITION OF CHRONIC LYME
    . Ill for more than one year, regardless of whether treatment has been given
    . Disease changes character
    . Involves immune suppression
    . Less likely to be sero-positive for Lyme
    . More likely to be co-infected
    . More difficult to treat

    CHRONIC LYME DISEASE
    Why are patients more ill?
    . Higher spirochete Load
    . Development of alternate forms
    . Immune suppression and evasion
    . Protective niches
    . Co-infections

    SPIROCHETE LOAD
    . Low Spirochete Load-
    - Inapparent infection
    . Increased Spirochete Load-
    - Symptoms
    - Seropositive

    ALTERNATE MORPHOLOGIC FORMS
    . Spirochete form- has a cell wall
    - Penicillins, cephalosporins, Primaxin, Vanco
    . L-form (spiroplast)- no cell wall
    - Tetracyclines, Erythromycins
    . Cyst?
    - Flagyl (metronidazole), tinidazole
    - Rifampin


    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    . Bb demonstrated to invade and kill cells of the immune system
    . Bb demonstrated to inhibit those immune cells not killed
    . The longer the infection is present, the greater the effect
    . The more spirochetes that are present, the greater the effect

    PROTECTIVE NICHES
    . Within cells
    . Within ligaments and tendons
    . Central nervous system
    . Eye

    DIAGNOSING LYME
    . Is a clinical diagnosis- look for multisystem involvement
    . 17% recall a bite; 36% recall a rash
    . 55% with chronic Lyme are sero-negative
    . Spinal tap- Only 7% have + CSF antibodies!
    . ELISAs are of little value- do Western Blots
    . PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources

    CD-57 COUNT
    (Natural Killer Cells)
    . Low counts seen in active Lyme
    . Reflects degree of infection
    . Can be a screening test
    . Can be used to track treatment response
    . Can predict relapse
    . Commercially available and covered by insurance!

    WESTERN BLOT IN LYME
    . Reflects antibody response to specific Bb antigens- they are reported as numbers called "bands"
    . Some bands are seen in many different bacteria- "nonspecific bands"
    . Some bands are specific to spirochetes
    . Some bands are specific to Bb
    . Positive blot contains bands specific for
    Lyme
    . Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93
    . Spirochetes in general: 41
    . Nonspecific: All others!
    . The more specific bands that are present, the more sure the diagnosis

    NOW THE BAD NEWS! PITFALLS OF THE WESTERN BLOT
    . Very difficult to produce and interpret a western blot
    . Bands do not easily line up
    . Appearance affected by subtle changes in temperature and chemistry of the test system
    . The specific strain of Bb used to produce the antigens may not match the strain the patient has!

    HOW DO YOU MAKE THE DIAGNOSIS?
    . Lyme is a clinical diagnosis
    . Even the best Lyme tests are only an adjunct
    . Use the ILADS point system

    POINT SYSTEM
    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    POINT SYSTEM DIAGNOSIS
    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below

    LYME DISEASE TREATMENT ESSENTIALS
    . Pharmacology
    . Appropriate route of administration
    . Appropriate duration of therapy
    . Supportive measures
    . Search for co-infections

    LYME DISEASE TREATMENT
    Pharmacology
    . Kinetics of killing B. burgdorferi
    - Pulse therapy; cell wall agents vs. doxycycline
    . Critical to achieve therapeutic drug levels
    . Tissue penetration of the antibiotic
    . Intracellular site of action
    . Alternate forms of B. burgdorferi
    - Cell wall agents vs. other mechanisms
    . Antibiotic combinations

    ROUTE OF ADMINISTRATION
    Repeated Antibiotic Treatment in Chronic
    Lyme Disease (Fallon, JSTBD, 1999)
    . No response to placebo
    . Slight benefit from oral antibiotics
    . Intramuscular benzathine penicillin more effective than oral antibiotics
    . Intravenous therapy most effective

    INDICATIONS FOR INTRAVENOUS THERAPY
    . Abnormal spinal fluid (WBC, Protein)
    . Synovitis with high ESR
    . Illness for more than one year
    . Age over 60
    . Prior use of steroids
    . Failure or intolerance of oral therapy

    ANTIBIOTIC CHOICES:
    Oral antibiotics
    . Amoxicillin + probenecid, Augmentin XR
    . Doxycycline, minocycline and tetracycline
    . Cefuroxime (Ceftin)
    . Clarithromycin (Biaxin)
    . Azithromycin
    . Metronidazole (Flagyl)
    . Rifampin

    INTRAVENOUS THERAPY
    . Ceftriaxone (Rocephin) still used the most
    - Current recommendation: 2 grams twice a day, 4 days in a row each week
    . more effective
    . safer, and better lifestyle
    . can use peripheral IV line
    - May also prescribe Actigall to prevent gallstones (Bb in gallbladder!)

    INTRAVENOUS THERAPY
    Other Options
    . Cefotaxime (Claforan)
    . Doxycycline
    . Azithromycin (Zithromax)
    . Vancomycin
    . Imipenem (Primaxin)

    BICILLIN-LA
    . Injection of long acting penicillin-
    "Benzathine Penicillin"
    . Efficacy is close to that of IV's!
    . 1.2 million U- 3 or 4 doses per week
    . No GI side effects and minimal yeast
    . Excellent foundation for combination Rx
    . Given for 6 to 12 months

    TREATMENT DURATION
    . Early infection
    - Four to six weeks to bracket an entire B.
    burgdorferi generation cycle

    . Late Infection
    - Open ended therapy that must continue until signs of active infection have cleared
    - IV for 3 to 6+ months, then oral or IM maintenance therapy if tolerated and effective
    - May need to continue treatment for months to years

    KEY POINTS- I
    . In chronic Lyme Disease, infection may persist despite prior antibiotic therapy
    . Repeated or prolonged antibiotic therapy may be necessary- follow 4-week cycles
    . Illogical to follow serologies
    . PCR positivity and low CD-57 counts imply persisting, active infection
    . Search for co-infections (clinical diagnosis!)

    KEY POINTS- II
    . Treat co-infections
    . Do not use too low a dose
    . Target all morphologic forms of Borrelia
    . Appropriate route of administration
    . Appropriate duration of therapy
    . Supportive measures

    CO-INFECTIONS IN LYME
    . Nearly universal in chronic Lyme
    . Symptoms more vague, and overlap
    . Diagnostic tests LESS reliable
    . Co-infected patients more ill
    . Co-infected patients more difficult to treat

    CO-INFECTIONS IN LYME
    . Bartonella
    . Babesia
    . Ehrlichia
    . Mycoplasma
    . Viruses
    . ?Others

    CO-INFECTIONS IN LYME WHAT IS THE MOST COMMON TICKBORNE INFECTION IN THE NORTHEAST?

    Bartonella
    . More ticks in NE contain Bartonella than contain Lyme
    . Clinically, seems to be a different species than "cat scratch disease"
    . Gastritis and rashes, CNS, seizures, tender skin nodules and sore soles
    . Tests are insensitive! (serologies and PCR)
    . Levofloxacin (Levaquin) is drug of choiceconsider adding proton pump inhibitor

    PIROPLASMS
    (Babesia species)
    . Many different species found in ticks (13+)
    . Not able to test for all varieties
    . WA-1 more difficult to treat than B. microti
    . Diagnostic tests insensitive
    . Chronic persistent infection documented
    . Infection is immunosuppressive

    Babesia Testing
    . PCR and Serology
    . Fluorescent In-situ Hybridization Assay
    - Fluorescent-linked RNA probe
    - Increases sensitivity 100-fold over conventional Giemsa-stained smears
    . Enhanced smears-
    - Buffy coat
    - Prolonged scanning
    - Digital photography

    BABESIA SMEAR
    Conventional blood
    smear

    Fluorescent In-situ Hybridization
    Assay
    Babesia FISH

    Treating Babesiosis
    . Is a parasite, so is not treated with antibiotics
    . Can be treated while on Lyme medications
    . Clindamycin + quinine rarely used
    . Atovaquone (Mepron) plus azithromycin for 4 to 6 months
    . Malarone
    . Added sulfur
    . Added metronidazole (Flagyl)
    . Artemesia

    Ehrlichia
    . Can cause acute and chronic presentations
    . Acute- sudden high fever, severe headaches, very painful muscles, low WBC counts,
    elevated liver enzymes
    . Chronic- same, but not as severe
    . Test with serology, PCR or smear
    . Treat with doxycycline or rifampin
    40 J. J. Burrascano, MD April 24, 2004

    Mycoplasma
    . "Chronic fatigue" germ
    . Not clear its origin or source
    . More often seen in the immunosuppressed
    . Test with PCR
    . Treat with doxycycline and add fluoroquinolone
    . Erythromycins & rifampin, with added hydroxychloroquine OK but less effective

    Other Co-infections
    . Especially in the immunosuppressed
    . Chlamydiae
    . Viruses
    - HHV-6, CMV, other herpes
    . Yeasts
    . Others

    DANGEROUS MIX!
    . Co-infections missed in Lyme patients
    . Co-infected patients more ill
    . Babesiosis and Ehrlichiosis can be fatal!
    . Lyme treatments do not treat Babesia or Bartonella
    . One reason for "treatment-resistant" Lyme
    . "Silent infections" may be transmitted by transfusions

    ASSOCIATED CONDITIONS
    Neurally Mediated Hypotension
    . Dehydration, autonomic neuropathy, pituitary insufficiency
    . Paradoxical response to adrenaline
    - profound fatigue
    - adrenaline rushes and palpitations
    - unavoidable need to lie down
    . Diagnose with tilt table test performed by a cardiologist, and pituitary function tests

    ASSOCIATED CONDITIONS
    Hormonal Dysfunction
    . Significant disturbance of the hypothalamic-pituitary axis
    . Extremely difficult to diagnose
    . When corrected, are tremendous benefits!
    . A major key to the debility in chronic Lyme

    ASSOCIATED CONDITIONS
    Hormonal Dysfunction
    . Chronic lack of stamina
    . Loss of libido
    . Intolerance of stress including Herxheimers!
    . Unexplained weight gain
    . Hypersensitivity to the environment
    . Persistent encephalopathy despite Lyme treatment

    ASSOCIATED CONDITIONS
    Borrelia Neurotoxin
    . Effects
    - Neurologic dysfunction
    - Cytokine activation
    - Hormone receptor blockade
    . Testing for neurotoxin:
    - Visual contrast sensitivity test
    - Measure cytokine levels
    - Test for insulin resistance
    . Treat with bile acid sequestrants

    ASSOCIATED CONDITIONS
    Cerebral Vasculitis
    . Contributes to encephalopathy
    . Vascular headaches
    . Seen on SPECT brain scans

    SPECT BRAIN SCANS
    . Reflects blood flow and health of the nerve cells
    . Pre and post-Diamox scans
    . Proves the symptoms are real!
    . Useful in differentiating Lyme Disease from a psychogenic illness
    . Can be done serially to reflect clinical changes

    SUPPORTIVE THERAPY
    . NUTRITIONAL SUPPORT
    - Blend of multivitamins, B-complex, CoEnzyme Q-10, and magnesium
    - Essential fatty acids
    - Low glycemic index, high fiber diet
    - Absolutely no alcohol
    . MANAGE YEAST OVERGROWTH
    - Oral hygiene, acidophilus/yogurt
    - Low carbohydrate diet

    METHYLCOBALAMIN
    . Prescription drug derived from vitamin B12
    - Aids in healing the central and peripheral nervous system
    - Documented benefit in strength, energy and cognition
    - Helps restore normal day-night cycle
    - Improves T-cell immune responsiveness
    . Must be injected daily for 3 to 6 months
    . Available only as a "compounded drug"
    . Excellent safety profile

    . ENFORCED REST; NO CAFFEINE
    - Must try to prevent afternoon energy sags
    - Proper sleep is essential
    . REHAB AND EXERCISE PROGRAM
    - Required for a full recovery
    - Intermittent program one to three days per week
    - Toning, stretching, posture, balance
    - Aerobics are not allowed until nearly fully recovered

    ALTERNATIVE THERAPIES
    THREE CATEGORIES:
    . Known to be helpful
    . Possibly helpful
    . No proven benefit

    ALTERNATIVE THERAPIES: KNOWN TO BE HELPFUL
    . Vitamins
    - Multi + Co-Q 10 + B complex + EFAs + Mg
    . Hyperbaric oxygen therapy
    - Monochamber preferred; three 30-day dives, one month apart
    . Eastern medicinals
    . Exercise program

    ALTERNATIVE THERAPIES: POSSIBLY HELPFUL
    . Immune modulation
    - Reishi spore extract, transfer factor
    - IVIG only if deficient
    . Vitamin C
    . Acupuncture

    ALTERNATIVE THERAPIES: NO PROVEN BENEFIT
    . Colloidal silver
    . Heat therapy
    - Sauna, infrared, hot tubs
    . Rife machines


    YOUR DUTY AS A LYME PATIENT
    . Political awareness and activity
    - Join support groups and be pro-active
    - Be willing to participate in events
    - Support the major Lyme organizations- ILADS, LDA, LDF
    . Fundraising!!!
    . Aggressively spread the truth especially to the media
    . Never give up, and never go away until our goals are met!

  19. toronto133

    toronto133 New Member

    I have been to the CanLyme site and found the name of a Lyme Doctor in Toronto. Hoping that my family doctor will refer me.

    Really not sure about how/if to continue with Detroit. Thanks for the info about Nystatin - I wonder why they can't write me a regular prescription for it given that the compounding pharmacy won't ship to Canada.

    How is your treatment going?

    Denise
  20. karatelady52

    karatelady52 New Member

    I agree with Hopeful, you should at least call the FFC and tell them you need something stronger for sleep. Since you were just in there, they should comply.

    I use to wake up at least 5 or 6 times a night and I thought that was normal. No wonder I was so tired all day.

    Did this doctor tell you not to start on everything at once? Mine said not to take everything at once or I would have a huge herx. She said try the Samento after taking the antibiotics for awhile.

    If you find a good LLMD, go for it. The only thing is I don't think they deal with hormones so its kind of a tradeoff. I think the LLMD's have had so much more experience with lyme than the FFCs since they've only been open a couple of years.

    Don't be discouraged. First, try to get some sleep meds. That will help your whole outlook. Then get your appointment with the LLMD (I don't think you need a referral?) You can get your records from the FFC.

    If you decide not to go there anymore, I'd let the head office know because these centers are so needed and we're all so sick when we go in. We don't need doctors who are patonizing and not giving us the time they are suppose to. Its hurts the reputation of the FFCs.

    There's a great book out I've been reading and many on Lymenet.org and reading -- its called Healing Lyme by Stephen Buhner. He has a very different protocol using herbs to treat lyme. The book is very well written and this doctor knows his stuff. It might be something to think about in the future after using antibiotics for awhile.

    Sandy

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