On Lyme disease by Art Doherty ************************************************************************ as of 16 June 1999 If you think you might have Lyme disease and are searching for a doctor, call the Lyme Disease Foundation at 860-525-2000 to obtain the name of a Lyme disease knowledgeable doctor in your area. They may ask for a small processing fee but it is well worth it. As you may know, there are many Lyme disease tests and it is not unusual that persons infected with Lyme disease bacteria show negative when the blood is tested. If you have a history consistent with Lyme disease - i.e., tick bite, rash, symptoms, etc., - my advice (I'm not a doctor - I am a knowledgeable Lyme disease patient of a knowledgeable Lyme disease doctor) is to not accept any of the following diagnoses without first trying antibiotic treatments: - Multiple Sclerosis (MS) - Fibromyalgia (FMS) - Chronic Fatique Syndrome or CFIDS - Arthritis - juvenile rheumatoid arthritis (JRA) - Arthralgias - Menieres Syndrome - Alzheimer's disease - Lupus - ALS (Lou Gehrig's disease) - Myasthenia Gravis - TMJ (temporomandibular joint [disorder]) - Guillain-Barre syndrome (GBS) - CDIP (chronic inflammatory demylenating polyneuropathy) - Scleroderma - Sjogrens Syndrome - Tinnitus - Crohn's disease - Gulf War Syndrome (GWS) - MCS (multiple chemical sensitivity) - Attention Deficit Disorder (ADD) - Tourette syndrome - Insanity - Reiter's syndrome - retinal vasculitis, or Eales disease - Cogan's syndrome - Horner's syndrome - Bannwarth's syndrome. - Etc. I no longer test positive for Lyme disease but still have an active infection that must be treated with antibiotics. If you think you may have had Lyme disease for some time, based on my personal experience, I would recommend the following initial treatment: - Rocephin (Ceftriaxone), Intravenous (I.V.), 2 grams once a day for 3 to 6 weeks immediately followed by: - Oral antibiotics - amoxicillin, 4 to 6 grams per day, divided into dosages taken 4 times a day - for at least 6 months and preferrably for one year or until symptoms have disappeared for three months. - Supplement with BACID (acidophilus lactobacillin, etc.) to replenish the good bugs in the intestines. If, after treatment, symptoms start to reappear, antibiotic treatment must be started again. This may seem extreme but the Lyme disease bacteria are very difficult to kill. Many doctors do not know enough about the disease to adequately diagnose or treat patients. You must persist in finding a doctor who will treat Lyme disease aggressively and for long duration if that is required. Some, probably including myself, will require antibiotics for the rest of their lives, but that is preferrable to suffering with Lyme disease. If you do begin taking antibiotics, you may experience a worsening of symptoms, especially headaches. This is called the Jarisch-Herxheimer (J-H) reaction and is believed to be due to antibiotics killing off lots of bacteria at once which releases toxins. My J-H came 3 days after my first Rocephin treatment but others say it can come as late as 3 to 4 weeks after starting treatments and may occur periodically during treatment. One thing that I and others with this disease have learned is to eat no sugar - no honey, no ice cream, no fruit juice, no cookies, no desserts, no sweets at all! I know this is difficult but you will feel a lot better. Other sources for information on Lyme disease on the internet are: Lyme disease resources http://www.geocities.com/HotSprings/Spa/6772/resources.html Lyme Disease in the United States and Canada http://www.geocities.com/HotSprings/Spa/6772/lyme.html Lyme Disease - Conn's Current Therapy - 1997 (7 pages) Method of Joseph J. Burrascano, Jr., M.D. http://www.geocities.com/HotSprings/Spa/6772/conns.txt THE NEW LYME DISEASE Diagnostics Hints and Treatment Guidelines for Tick Borne Illnesses by Joseph J. Burrascano, Jr., M.D. - 12th Edition, 1998 - (complete - 23 pages) http://www.geocities.com/HotSprings/Spa/6772/burrascano-12th.txt or http://guidelines.LymeNet.org/ (complete) or http://www.lyme.org/otherdis/burrascano.html (individual section links) MANAGING LYME DISEASE http://listserv.lehigh.edu/lists/lymenet-l/managing.htm Diagnostic Hints and Treatment Guidelines for Lyme Borreliosis by Joseph J. Burrascano, Jr., M.D. - 11th Edition, 1996 - (21 pages) Lyme Disease Information Resource (LDIR) http://x-l.net/Lyme/ The Lyme Disease Network http://www.lymenet.org/ Lyme Disease Foundation (LDF) http://www.lyme.org/ The LDF may be contacted for a doctor referral in your area. mailto:lymefnd@aol.com Hartford, CT Lyme Alliance http://www.lymealliance.org/ Ask NOAH About: Lyme Disease http://www.noah.cuny.edu/lyme/lyme.html Cheryl Orlowski's Lyme disease web page http://www.aero-vision.com/~cheryl/lymes.html Symptoms of Lyme disease http://www.geocities.com/HotSprings/Spa/6772/symptoms.txt Nine reasons for false negative Lyme disease test results http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt Lyme disease and false negative or false positive blood test results http://www.geocities.com/HotSprings/Spa/6772/false-neg-pos-index.html Lyme Disease Misdiagnosed As ... http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html Lyme Disease Risk Assessments - done by the U.S. Army http://www.utech.net/users/10766/lyme.htm Lyme disease human vaccine information on the internet http://www.geocities.com/HotSprings/Spa/6772/vaccine.html Is Lyme Disease Underdiagnosed, Overdiagnosed, and/or Underreported? http://www.geocities.com:80/HotSprings/Spa/6772/under-over-diagnosed.html ----- And, of course, the news:sci.med.diseases.lyme newsgroup is an excellent source for information and support. I know a lot about this disease and have talked to doctors and patients from around the world. I have more information if you need it. If you have Lyme disease I know what you are experiencing. Please do not hesitate to contact me if you have any questions. Sincerely, Art Doherty 4448 Libra Drive Lompoc, CA 93436 mailto:doherty@utech.net Nine reasons for false negative Lyme disease blood tests ************************************************************************ as of 24 August 1998 The Lyme Disease Foundation (LDF), in their brochure entitled "LDF Frequently Asked Questions About Lyme Disease" lists the following nine reasons for false negative Lyme disease tests results: [brackets contain my words] a. Antibodies against Bb are present, but the laboratory is unable to detect them. [Borrelia burgdorferi (Bb) is the Lyme disease bacteria.] b. Antibodies against Bb may not be present in detectable levels in patients with Lyme disease. Reasons are listed below. 1. The patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies. 2. The patient is currently on or has previously taken anti-inflammatory steroidal drugs (such as those taken to treat rheumatoid arthritis) or certain anticancer drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response. 3. The patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing. [I think this reason is very important and prevalent. For this reason, some of the worst cases of Lyme disease test negative - too much bacteria for the immune system to handle.] 4. The patient could be immunosuppressed for a number of other reasons and the immune system is not reacting to the bacterium. 5. The bacterium has changed its makeup (antigenic shift) limiting recognition by the patient's immune system. 6. The patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (2-6 weeks). Please do not interpret this statement as implying that you should wait for a positive test to begin treatment. 7. The laboratory has raised its cutoff so high that a patient's previously positive test is now borderline or negative. 8. The patient is reacting to the Lyme bacterium, but is not producing the "right" bands to be considered positive. ----- Lyme Disease Foundation 1 Financial Plaza Hartford, CT 06103 (860)525-2000 fax (860)525-TICK Lyme Disease National Hotline (800)886-LYME email: mailto:lymefnd@aol.com web page: http://www.lyme.org/index2.html Lyme disease and fingernails as of 23 July 1998 ************************************************************************ On the subject of fingernails and Lyme disease, I have experienced the following when I initially had untreated Lyme disease for about nine months: 1. Nail splitting or cracking at the tip of nail where the vertical ridges (ridges in nail, parallel to the finger) exit at nail tip. 2. White spots in the nail on most nails. 3. Uneven growth/horizontal ridges (ridges perpendicular with finger). All these symptoms, except the white spots, disappeared upon taking antibiotics. The white spots would lessen but they never completely disappeared. However, after stopping antibiotics, these symptoms reappeared along with all of the other Lyme disease symptoms. Many times I could roughly predict when the white spots might appear at the base of the nails. They appeared two to four days after a major flare of symptoms when I was not taking antibiotics and was relapsing. After doing a little searching and reading, I have found that the white spots are called leukonychia and are due to zinc deficiency. Zinc also affects the immune system - too little or too much can have an adverse effect on the immune system. I take a extra zinc (30mg, four times a day - RDA is 15mg) plus the 15mg contained in a Centrum multiple vitamin and the white spots are gone. There is a paper on nutrition that discusses zinc and its relationship to the white spots and the immune system at: http://www.nutramed.com/nutrition/iron_zinc.htm If only these fingernail symptoms were the worst of the Lyme disease symptoms! But, all this indicates to me that those who state that some fingernail abnormalities are due to disease/infection are correct. Art Doherty mailto:doherty@utech.net Doxycyline, amoxicillin (tetracycline and penicillin) and Lyme disease. ************************************************************************ 26 May 1997 Knowing that different antibiotics may work differently for different people at different dosages for different courses at different times for different strains of Bb, I make the following observations about the antibiotics doxycycline and amoxicillin and my battle with Lyme disease. Background ************************************** No doubt of my Lyme disease diagnosis - tick bite, rash - reddish circles with slightly raised edges and lighter centers, many classic Lyme disease symptoms, and, nine months later with no antibiotic treatment, a positive Lyme disease titer. After approximately four years of ups and downs with short term (3 to 6 weeks) IV Rocephin (ceftriaxone) and ineffective oral treatments, my local doctor agreed to one more 6 week IV Rocephin treatment followed by long term (one year or more) of treatment with the combination of doxycycline and Biaxin (clarithromycin). After approximately 9 months of this combination treatment, during which time all the Lyme disease symptoms did not disappear as they had during previous treatments, the major symptoms reappeared. I then, in the summer of 1995, had to find my current Lyme literate doctor. My Lyme literate doctor and I decided to switch to the combination of Biaxin and amoxicillin. This has made an enormous difference. After being on this combination for over 2 years, almost all symptoms have disappeared and my health continues to improve, even though I just recently stopped taking the Biaxin. Why did amoxicillin work for me and doxycycline did not? My guess ************************************** I hypothesize that, because I went so long before receiving my initial treatment (9 months) and/or because I required large dosages of IV and oral antibiotics, my immune system may have been compromised. In the abstract that I have of Dr Burrascano's presentation at the 1995 Eighth Annual International Scientific Conference on Lyme Borreliosis and Tick-Borne Disease held in Vancouver, British Columbia, entitled "Management of Chronic Lyme Disease", Dr Burrascano states that "My studies have shown that many patients with resistant infections have deficiencies in B, T, and/or killer cell function." Doxycycline prevents the bacteria from reproducing but does not directly kill the bacteria - it weakens them and they die or are killed by the immune system. This is what is referred to as bacteriostatic action and is dependent on a well functioning immune system. But if the immune system has been adversely affected by the disease or antibiotics, then it might not be able to cope with the bacteria. On the other hand, amoxicillin, a penicillin, is bactericidal meaning that it directly kills the bacteria, and does so while they are dividing (replicating). This may be the reason that amoxicillin has worked so well for me - it does not depend on a fully functioning immune system. Other issues ************************************** 1. Does amoxicillin penetrate the brain barrier? The Physicians Desk Reference (PDR) and the little flyer that is included in the antibiotic container (very often removed by the pharmacist) states the following: "It [amoxicillin] diffuses readily into most body tissues and fluids, with the exception of brain and spinal fluid, except when meninges are inflamed." However, Tom Grier, in his notes of Dr Burrascano's presentation at the same 1995 conference cited above, writes "He [Dr Burrascano] emphasized that Neuro Syphilis is treated with 6000 mg Amoxicillin plus probenicid daily!". To me, this means that at high enough concentrations, amoxicillin does in fact penetrate the brain barrier. It very well could be that the third Rocephin treatment that I had just before going onto very long term oral antibiotics cleared up all of my neurological symptoms and the orals have taken care of any bacteria that was able to "hide out" in deep tissues such as tendon/bone interfaces, etc. In any event, since being on amoxicillin (6000 mg per day) I have had no return of symptoms, including neurological symptoms. 2. Can one benefit by taking doxycycline and amoxicillin at same time? The PDR and drug flyers also state for doxycycline, under "Drug Interactions", "Since bacteriostatic drugs may interfere with the bactericidal action of penicillin, it is advisable to avoid giving tetracyclines [like doxycycline] in conjunction with penicillin [like amoxicillin]." The way I read this is that, it's not so much that the chemicals counteract or cancel each other, it's that if doxycycline has prevented the bacteria from replicating, then the amoxicillin will have no effect since it depends on the bacteria replicating. However, I have my doubts that all of the bacteria are affected at the same time by doxycycline and that amoxicillin may kill some bacteria at the same time that doxycycline is having its affect. And besides, my motto is, if it works for you, use it! Art Doherty mailto:doherty@utech.net Lyme disease treatment regimen for Art Doherty ************************************************************************ as of 07 June 1997 1. I take 500 mg of Biaxin, twice a day, one with breakfast and one during my evening meal. I take 1500 mg of amoxicillin (three 500 mg capsules), four times a day - with each meal and once in the middle of the night with lots of water. 2. I do not take probenicid - I rely on the high and frequent dosages to keep the blood levels up. Early on I tried probenicid and did not handle it very well - felt very groggy in the mornings. I, too, had minor stomach upset when starting Biaxin. It took awhile but I gradually got used to it. I always did well on the IV Rocephin but the effects never lasted - the Lyme disease has always relapsed after the IV treatments although I still recommend them for serious neurological symptoms but followed immediately with orals, specifically amoxicillin. Here's my complete, original regimen (Sept 1995 - Sept 1997): breakfast: 500 mg Biaxin 1500 mg amoxicillin 400 mg Zovirax (for EBV) 30mg zinc one-half stress tab (vitamin B complex) one-half multi-vitamin (Centrum silver) 500 mg vitamin C one soft gel of cod liver oil lunch: 1500 mg amoxicillin one-half stress tab 30 mg zinc 500 mg soft gel capsule of primrose oil 500 mg vitamin C one to two hours before supper: one yougurt and two capsules of freeze dried acidophilus lactobacillin supper: 500 mg Biaxin 1500 mg amoxicillin 400 mg Zovirax (for EBV) 30mg zinc one-half stress tab (vitamin B complex) one-half multi-vitamin (Centrum silver) 500 mg vitamin C one 500 mg soft gel capsule of garlic oil midnight (taken with lots of water): 1500 mg amoxicillin 500 mg vitamin C 30 mg zinc Limited sweets - none at suppertime. [As of September 1997, I have reduced the amoxicillin to 1500mg, twice per day; I no longer take Biaxin; and I have cut back the supplemental zinc to - 25mg twice per day.] --------------- Prepared by Art Doherty Lompoc, California doherty@utech.net