CINDYCOR AND OTHER LYMIES!

Discussion in 'Fibromyalgia Main Forum' started by darude, Nov 17, 2005.

  1. darude

    darude New Member

    MY DOCTOR HAS AGREED TO PUT ME ON DOXY SO WHAT ELSE SHOULD I ASK FOR TO GO WITH IT!!!! FOR THE CANDIDA ETC?????????
  2. hopeful4

    hopeful4 New Member

    Hi darude,
    When were you diagnosed with Lyme? I was just diagnosed last week at FFC, and am learning whatever I can.

    It is a complex illness, and the treatment is also complex. It can involve co-infections, candida, neurotoxins, hypercoagulation, and more. I'm going to paste in some reference material for you to look at.

    If you have Lyme and your doctor only treats you with doxycycline, the treatment is not likely to be effective. If your doctor is not LLMD (Lyme Literate M.D.), then I would strongly suggest that you find one to treat you for Lyme.

    Here's the first article for you. I'll get some more, too. The last few paragraphs start to talk about treatment. Good luck!!
    Hopeful4

    -------------------------------------------------------
    This is from the Fibromyalgia and Fatigue Center

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue


    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.


  3. victoria

    victoria New Member

    I agree with Hopeful4...

    My son was dx'd with active as well as chronic Lyme...

    we were told there were over 100 known strains of Bb (lyme) in US alone, so one needs to try different combinations of abx - my son tried a total of 5 different ones.

    ALSO it is important to include Flagyl for part of the treatment regularly to dissolve the cysts that the spirochete can form to hide out... bladder bacteria can also do this (e colii) which is why persistant infections there can happen.

    To start he was pulsing 3 weeks of abx with the Flagyl added in the 3rd week, with every weekend plus the 4th week off to allow immune system to calm down...

    He is now on a slightly different regiment of abx + Flagyl.

    You should really get a good LLMD... have you gone to ilads.org and checked out their links and info, etc.???

    All the best,
    Victoria
  4. jbennett2

    jbennett2 New Member

    I am on doxy also, with plaquenil and clarithromyacin thrown in for good measure. I have never been tested for coinfections.

    My dh who was recently also diagnosed is on tetracycline. I don't know how the doc decides what to try first.

    My daughter who also has Lyme was started on Biaxim and plaquenil but had such bad heart spells that she is now also on tetracycline. The best thing about tetra is the LOW COST!
  5. hopeful4

    hopeful4 New Member

    Here's what I'm doing through FFC. Boosting immune system for many months before lyme dx.

    Immune system - NK Stim (could use Proboost, Transfer Factor, Maitake mushrooms, other)
    COQ10
    Artimisin - anti-viral, anti-inflammatory
    Nystatin - candida (started with Flucanazole for 3 months)
    Jarrowdophilus - probiotic for the candida. Some people say that Primal Defense is better.
    Antibiotic - Lyme (started with doxycyclin, had a reaction. Trying to see if insurance will cover long term Zithromax).
    Cumanda - anti-viral, anti-parasite, anti-lyme
    Lumbrokinase - enhances the anti-lyme treatment
    Burbur - helps with herxing
    Samento - Lyme

    In addition, treatment requires pulsing (stopping and starting different RX or nutraceuticals at different times).

    Also, there are co-infections often present which you need to be tested for and treated. I have mycoplasma and neurotoxins. As a result of Lyme, I am getting tested for hypercoagulation which will also need to be treated.

    I'm pretty brain fogged so I may have forgotten something. Hope this helps.

    Take care,
    Hopeful4
  6. hopeful4

    hopeful4 New Member

    Info on the net:

    iliads.org
    Click on articles and presentations
    Click on Joseph Burrascano Jr., M.D.: Advanced Topics in Lyme Disease, Diagnostic Hints and Treatment Guidelines for Lyme and Ohter Tick Borne Illnesses

    He is considered the top Lyme doctor in the US, having treated for 30 years.

    walyme.com
    For Washington State, but has lots of info and links
  7. hopeful4

    hopeful4 New Member


    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!
  8. MKlady

    MKlady New Member

    Thanks for posting the info! Of course, the bad news is I probably have it - Low NK cells, yeast, hormone imbalances, chronic fatigue, etc. We haven't tested for it yet, as we're waiting until we work on the candida. Thank goodness there are people out there who know what they are doing!! I go to FFC in Las Vegas and I'm feeling quite a bit better - with occasional setbacks.
  9. Frecker777

    Frecker777 New Member

    Hi Hopeful4,
    I am on the same protocol from the FFC for lyme disease and slowly working in all the herbs every three days, but I am having some trouble of when to take everything. Could you outline a day and tell me when you take your supplements and abx and also when you eat?! For instance, can I take the Burbur with the Samento? Do you take the Samento on an empty stomach?
    Thanks so much,
    Carrie

    --You can email me at Frecker777@aol.com...I could sure use talking to a friend undertaking the same protocol
    [This Message was Edited on 11/19/2005]
  10. Dee50

    Dee50 New Member

    I'm bumping this great information so I can find it quickly.
    Dee50
  11. pumpkinpatch

    pumpkinpatch New Member

    I went out and bought one of those 3 drawer cart on wheels from Walmart and I have everything organized in that cart.

    Morning:
    When I get Up:
    T3 capsule, pregnenolone, magnesium, dhea, Transfer Factor
    Vitamin C, Q-10, Omegas

    Eat Breakfast: Drink a few glasses of water

    Mid-Morning:
    1 Doxycycline, 1 Antamadine (anti-viral)

    Before Lunch or with lunch:
    1 500 mg. Biaxin

    2 p.m._- 1/250 mg. Flagl, 3 p.m.- 1 doxy.

    Before Supper: Dr. T's daily enzyme drink with B. and Vit. C

    After Supper: 1 more doxy

    Before Bed: 2 more mag.

    Bed: Progesterone (2) & trazadone

    During the Day: Acidophilus, dyflucan & yogurt to keep the yeast at bay. My sore stomach and digestion is improved.

    Also the reason why I'm on 3 different antibiotics is because lymes has 3 different life cycles, adult (Spiral form), egg (cyst form) and L formed (just hatched). This way I'm attacking them on all levels.

    Hope this helps. It's quite a ritual but starting to pay off. I drink lots of water and the last glass I put 1 tsp. sea salt.

    Cindy











    [This Message was Edited on 11/20/2005]
  12. LdyM

    LdyM New Member

    Could you please describe the three drawer cart on wheels you got at Wallmart in greater detail? I need something LARGE.

    I'm in a maze of FFC treatments and with each addition become more confused. I need to get organized to reduce the stress of getting well!

    Thanks, **LdyM
  13. pumpkinpatch

    pumpkinpatch New Member

    In the housewares dept. with the plastic containers they have them at all the Walmarts.

    3 drawers white plastic cart on wheels, cost is around $15.00. Some people use them for filing. The drawers are a good size.

    Really made a difference in organization because I had everything scattered.

    It took me 5 months to get to this stage. Will be talking to FFC Dr. on Monday. My adrenal cortisol levels are way off so I'm sure I'll be adding that to my list!

    Cindy

  14. LdyM

    LdyM New Member

    Thank you Cindy. I believe I have a picture in mind of the drawers now. I recall a kind of plastic cabinet type thing.

    I've been seeing Kent Holtorf at the Torrance FFC since June with no positive results as yet. He started me on Kutapressen (an anti-viral) injections this month, but two weeks into them I shattered the bottle on the bathroom floor. Will attempt to drive down Monday to buy more.

    I'm almost afraid to hope this new into the Kut., but I had the most "normal" feeling day today that I've had in years. Perhaps it's working!

    Regardless, it was such a nice day..

    **LdyM
  15. pumpkinpatch

    pumpkinpatch New Member

    Believe you me I still have a long ways to go but I'm starting to seeing slight improvements.

    Did you have the infectious panel done? That seems to be the key to the real underlying problems for some.

    I've never had of anti-viral injections. Are you taking all the immune boosters? I certainly have more energy from them.
    Also getting the hormones back up to a good level. Mine were all very low but extremely high RT3.

    This is a long process but I'm still determined to give this some time and continue on with my daily routine.

    Cindy
  16. darude

    darude New Member

    For the wonderful info. I'm thinking that they can't give me any reason for the brain lesions other than Lyme!!! I should try treating it. Everytime I go on antibiotics for something else I feel better sooooooooooo...........
  17. pumpkinpatch

    pumpkinpatch New Member

    Yes, you should really consider phoning Dr. M. in Hope, B.C. or going to one of the FFC clinics. You are about a 8 hr. drive to Hope. He will do the Igenex Specialized Lymes Testing and co-infections.

    Another honorable mention here for me is when this all started three years ago for me, I had severe sinusitis. The cat scan picked this up. Also inner ears infections, vertigo, etc.

    Apparently with some respiratory infections it has a abnormal way of existing the body and can change forms and inhabit the cells of our body. It can go into the blood cells, immune cells, brain cells etc. So your cells can't do the work it was meant to do thus the diagnosis of CHLAMYDIA PNEUMONIAE.

    I had high blood readings for CP and the good thing is with lymes and CP the treatment is the same with the combination antibiotic therapy. I know one thing and that is my head is feeling so much better. My immune system is definitely improving.

    We all have different outlying problems but I really think I'm getting to the bottom of mine. It just takes time and persistence.

    Thanks
    Cindy

  18. darude

    darude New Member

    Before this all started I came down with pneumonia and was very ill for several months. I thought it had gone but know don't think so. On my most recent chest xray it showed a linear scar which was explained as a partial lung collapse. Also now have COPD.
  19. LdyM

    LdyM New Member

    No, I have not yet had the infectious panel done. When I asked about it, Dr. H. said that we take care of the hypercoagulation first with Heparin injections. Unfortunately, after two weeks I had to temporarily discontinue the injections, because I am having extensive biological dental work done and the Heparin was impeding the gum healing process. Heparin made me feel very sick. Dr. H. said it was working.

    I should mention that because Dr. Holtorf is so fully booked there is sometimes as much as a three month wait between appointments. So although I began in June I've only seen him three times, total.

    Immune boosters? I guess I'm taking enough of them, as I take lots of stuff. I've taken two of the IV's. Once the Collidal Silver (minerals/glutathione push) and once the Peroxide (oxidative). Can you tell me which immune boosters you are on? Perhaps I can improve in that area.

    Well, I sure enjoyed my one day! Back to the usual CFIDS sick. Hopefully it was a sign of the future.:) Not being able to sleep is a big problem and the dental work/surgeries are also slowing my progress.

    I'm happy for you Cindy! Inspired also! **LdyM


    [This Message was Edited on 11/21/2005]
  20. Dalphia

    Dalphia New Member

    Hey Dabru,
    Noticed your post and wanted to respond of how wonderful it is your feeling better. Sorry, but I addressed it to Sandy, (been talking with her quite a bit), but, please know it should have been addressed to you...........

    Continue to progress on!!!!!!!!!!!!!!!! and keep us updated.
    Dalphia