Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 I don't think that 3 weeks of antiobiotics is sufficient for lyme disease, nor do most people who have had lyme disease! A lyme knowledgeable dr will prescribe antibiotics for at least 4 weeks. If it were me I'd say go with 6-8 weeks of antibiotics. I was diagnosed with late-stage lyme disease and it probably advanced to that stage bec I was only given 2 weeks of antibiotics when I first got sick. I think my current autoimmune problems stem from lyme disease--that is, lyme either triggered them and/or I still have lyme disease. Good luck to your friend. Below is some information that I received back in April '99 from AmericaOnLyme. Carol E from NY ********************************************************************** Dear Friend, Welcome to the online community of Lyme Disease patients and their friends. Attached below you will find helpful information and a list of resources which should be of great value to you. If you wish we will add you to our mailing list so that you will be kept abreast of all important and breaking news that affects us. These lists are kept strictly confidential and will not be shared with other members without your explicit written permission or request. If at any time you wish to be removed from these lists, please write to our Chat list contacts and your name will be deleted. Please note that AOLyme maintains 2 separate mailing lists. One is for chat room news and announcements; mailings will be made on a weekly basis. The other is for breaking news and political action; mailings currently done on a sporadic, " as-needed " basis. If you wish to be removed from our lists, please drop a note to either or both of the contacts named below. Chat list contact ................... TheSuz44@.... Political action list contact ..... Ameronlyme@.... Supportively yours, Joan( BHostTICK), Suz (TheSuz44),(BHostSuz) and Jeff (Ameronlyme) ------------------------------------------------------------------------------ --------------------- AMERICA OnLYME (AOLyme) ------------------------------------------------------------------------------ --------------------- A loosely organized support group for Lyme disease patients, family, friends and others. Although we originated on America Online (AOL), we are not affiliated with them in any way. There is no financial incentive to those of us who put our time in to run AOLyme. We are just a bunch of patients, and concerned friends, like you, who want to help others. There's no membership fee and you don't even have to be on AOL to be a member, though it IS recommended so you can make it to our live chats :-) (see resource listings below). Our mission is to provide assistance, support and information to all who need it, to disseminate the truth about Lyme disease, to support those organizations, doctors and researchers who seek the truth, and to expose the lies and distortions in the mainstream medical literature. ------------------------------------------------------------------------------ --------------------- ONLINE RESOURCES - Organized Chats ------------------------------------------------------------------------------ --------------------- America Online: Monday 8pm EST ........ <A HREF= " aol://2719:3-235-Equal%20Access%20Cafe " >Equal Access Cafe</A> Monday 9pm EST ........ <A HREF= " aol://2719:2-2-lyme " >Private Room 9PM</A> Daytime chat: Wednesday 3pm.......... <A HREF= " aol://2719:2-2-Lyme%20Disease " >Private Room Lyme Disease</A> hosted by PSpatches and LymeChat MRH Neurology Chat room Open........................ <A HREF= " http://neuro-www3.mgh.harvard.edu/interaction$/chat/lyme#start " >Lyme Disease Chat on Net</A> IRC Starlink Tuesday..... 10pm EST ... #Lyme Friday........ 10pm EST ... #Lyme IRC Dalnet Thursday......10pm EST... #Lyme CompuServe: Wednesday 9pmEST ... GO PubHlth (Look for " Lyme/Other Zoonosis " ) ------------------------------------------------------------------------------ --------------------- ONLINE RESOURCES - Information and Message Boards ------------------------------------------------------------------------------ --------------------- America Online: Keyword: Better Health <A HREF= " aol://4344:308.BHmain.682006.579041958 " >Better Health</A> For bulletin boards and ALL AOL Heatlh CHATS. Better Health has a wide variety of chats that you may wish to attend. Internet Newsgroups: <A HREF= " aol://5863:126/sci.med.diseases.lyme " >sci.med.diseases.lyme (unread)</A> Message Boards: L<A HREF= " aol://5863:126/mB:109640 " >yme Disease Message Board #1</A> Infectious Disease area <A HREF= " aol://5863:126/mB:107311 " >Lyme Disease Board #2</A> Arthritis and Related topics <A HREF= " aol://5863:126/mB:221361 " >Lyme Disease Board #3</A> General Health Area <A HREF= " aol://5863:126/mB:107978 " >Lyme Disease Message Board #4</A> Self Help and Support Groups CompuServe: Go " PubHlth " (Look for " Lyme/Other Zoonosis " ) ------------------------------------------------------------------------------ --------------------- ONLINE RESOURCES - World Wide Web Sites ------------------------------------------------------------------------------ --------------------- Our own AOLyme site : <A HREF= " http://members.aol.com/ameronlyme/aolyme.html " >http://members.aol.com/am eronlyme/aolyme.html</A> The following 2 web sites provide a wealth of important Lyme disease information and links to all kinds of great sites. You will find such items as court cases, Dr. ph Burrascano's Treatment Guidelines, NIH Grants, Foundation and Support group info, etc. Lymenet Homepage: http://www.lymenet.org/ Lyme Resource Page: http://www.sky.net/~deporter/lyme1.html ------------------------------------------------------------------------------ --------------------- ONLINE RESOURCES - AOL Contacts for Related Illnesses ------------------------------------------------------------------------------ --------------------- Fibromyalgia ............................. RuDrex@..., DU@... Chronic Fatigue Syndrome ......... BHostEppy@..., BHostJudy@... Multiple Sclerosis ...................... BhostOish@...,oishda@...,BhostAngel@... ------------------------------------------------------------------------------ --------------------- DOCTOR REFERRALS AND TELEPHONE HELP ------------------------------------------------------------------------------ --------------------- Lyme Disease Foundation 1-800-886-LYME 1-860-525-2000 ------------------------------------------------------------------------------ --------------------- AOLyme STATEMENT ON LYME DISEASE ------------------------------------------------------------------------------ --------------------- Lyme disease is now the second fastest spreading infectious disease in the USA behind AIDS. In 1994, reported cases increased by 58% over 1993. While the number of CDC reported cases appears to have decreased in 1995, it is important to note that this is not due to a lessening of the rate of increase, it is due to the CDC's manipulation of the diagnostic criteria (the criteria was tightened in 1995). Contrary to what most in the medical community believe, Lyme is NOT easily diagnosed and NOT always cured by the standard regimen of antibiotics and CAN become a chronic relapsing infection. Not only are there studies which support this, but there are many of us online who are living proof. Much still has to be learned about this illness. The NIH is now gearing up for a 5 year study of chronic Lyme disease. We hope this will provide some of the answers. In the meantime, those with disabling and chronic symptoms are forced to seek out diagnosis and treatment from Lyme literate doctors who are often far away from home. Others will continue to be misdiagnosed and mistreated due to doctors who rely on inadequate testing methods as the foundation for rendering their opinion. The Lyme literate doctors live in a climate of constant fear of losing their licenses due to charges of " overtreatment " and " overdiagnosis " leveled on them by those doctors who believe that long term therapy is never needed. Patients often face additional trouble in getting reimbursed for medical expenses, getting disability coverage, and getting support and understanding from friends and family. AOLyme believes that the current medical standards do NOT work in many cases and intends to do whatever is in our power to educate the medical community and the public, to see that honest and unbiased research is performed, and to end insurance company and HMO interference into our health and our doctor patient relationship. ------------------------------------------------------------------------------ --------------------- DIAGNOSTIC INFORMATION ------------------------------------------------------------------------------ --------------------- Several tests exist for Lyme disease, but, unfortunately, none are without flaws. The large amount of false negatives on all tests render them useless in excluding Lyme disease in patients exhibiting clinical signs. There is also a variance from one lab to the next in the accuracy, sensitivity and specificity of their tests. Finally, with the recent discovery of new strains of Borrelia that cause " Lyme-Like Illness " , it is not surprising that some patients will never test positive. The current Lyme tests are geared towards one specific Borrelia out of over a hundred. Regardless of what your test result says, if you were lucky enough to get the characteristic rash (EM, or erythema migrans rash), you have Lyme Disease. 60% or less of Lyme patients ever recall seeing this rash, which may occur anywhere on the body, not just at the site of the tick bite as is often mistakenly suggested. The rashes can take on many different appearance characteristics as noted in the following description (adapted from the Lyme Disease Foundation's " LDF Guide to Lyme Disease " ). A " gif " file containing pictures of these rashes is available either via e-mail from us, or in the " Lyme/Other Zoonosis " section of CompuServe's " PubHlth " forum. " One or more rashes (EM) - ring-like discoloration with areas of lighter and darker coloring, sometimes uniformly red and sometimes other shades of discoloration, occasionally with a crusty/oozy character if there is any minor break in the skin (please check site carefully to make sure that no tick remains imbedded in the skin if this drainage is present), rashes can recur, sometimes a secondary/satellite rash occurs resulting from the primary bite... " Because of all these problems, it is generally recognized by all that the diagnosis of Lyme Disease is a clinical one based on symptoms and medical history. Lyme disease is a multi-systemic illness. It can effect most every system in the human body and mimic many other illnesses. It is important to note that the symptoms of Lyme disease are so wide ranging that it is often misdiagnosed as illnesses such as multiple sclerosis (MS), lupus, fibromyalgia and chronic fatigue syndrome (CFS) to name a few. Lyme disease is truly the " great imitator " . A symptom chart is included in the next section. Below are the more common diagnostic tests. Note that the CDC approved tests, ELISA and Western Blot, which measure antibody response, are for " reporting purposes only " . Any doctor who tries to use these tests as a definitive tool in excluding Lyme disease is doing a tremendous disservice to his patients. Antibody Tests ---------------------- Antibody tests measure the bodies level of infection fighting agents to specific invaders. There is not total agreement on which particular antibodies are specific to the spirochete that causes Lyme disease. Added to that, some patients never develop the selected Lyme antibodies and others develop them months or years after becoming infected. Of utmost importance to note is that these tests all yield AT BEST, a 30% rate of false negatives. They also return a 10% or so rate of false positives. ELISA - The primary CDC* approved blood test used for Lyme disease. Western Blot - Now used by CDC* for confirmation of a positive ELISA. Prior to 1995, this test was an alternative to ELISA. If you have this done, make sure to request that " all bands " are reported by the lab. Spinal Tap/CSF - Has between a 43% and 80% false negative rate depending on which literature you choose to believe. * Reminder - " For Reporting Purposes Only " !!!!!!!!!!!!!!!! Antigen and PCR Tests ---------------------------------- These tests are far more specific for Lyme disease as they actually find elements (antigens) of the Lyme bacteria, Borrelia burgdorferi (Bb) in the fluid being examined. While highly specific to Bb, and far better than the antibody tests, these tests do not distinguish between dead and live bacteria, and therefore do NOT guarantee active infection. DNA/PCR - Can be performed on blood, CSF and joint fluid. The false negative rate is very high for these, especially on blood tests. A positive, however, is practically a guarantee that you have Bb in your fluid. NEW - DNA/PCR - " Multiplex PCR Test " combines two PCR tests in one. Also can be performed on any body fluid. LUAT - (Lyme Urine Antigen Test) - locates Bb antigen in a patient's urine. This test appears to offer great promise but is not used by many doctors. Spinal Tap - CSF can also be tested for the presence of antigen. This is a more accurate method than testing for antibodies, but still has a high false negative rate. ------------------------------------------------------------------------------ --------------------- SYMPTOM CHART ------------------------------------------------------------------------------ --------------------- The following list of Lyme disease symptoms was taken from Dr. Burrascano's Treatment Guidelines, 1995 edition. It is very thorough, though not all inclusive. It is not unusual in Lyme cases to have most of these symptoms, though not necessarily all at once. Many who suffer from Lyme disease experience symptoms that come and go, and change from week to week or month to month. 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change (loss or gain) 3. Fatigue, tiredness 4. Unexplained hair loss 5. Swollen glands 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production; breast pain 10. Irritable bladder or bladder dysfunction 11. Sexual dysfunction or loss of libido 12. Upset stomach 13. Change in bowel function (constipation, diarrhea) 14. Chest pain or rib soreness 15. Shortness of breath, cough 16. Heart palpitations, pulse skips, heart block 17. Any history of a heart murmur or valve prolapse? 18. Joint pain or swelling list joints_________________________________________________ 19. Stiffness of the joints, neck, or back 20. Muscle pain or cramps 21. Twitching of the face or other muscles 22. Headache 23. Neck creaks and cracks, neck stiffness 24. Tingling, numbness, burning or stabbing sensations 25. Facial paralysis (Bell's Palsy) 26. Eyes/Vision: double, blurry, pain, increased floaters 27. Ears/Hearing: buzzing, ringing, ear pain 28. Increased motion sickness, vertigo 29. Lightheadedness, wooziness, poor balance, difficulty walking 30. Tremor 31. Confusion, difficulty in thinking 32. Difficulty with concentration or reading 33. Forgetfulness, poor short term memory 34. Disorientation: getting lost, going to wrong places 35. Difficulty with speech or writing 36. Mood swings, irritability, depression 37. Disturbed sleep too much, too little, early awakening 38. Exaggerated symptoms or worse hangover from alcohol Note that Lyme disease has been found to cause a wide array of psychiatric conditions including panic attacks. Also, because of its the attack on the immune system, Lyme disease is capable of causing severe sinus problems and allergies. ------------------------------------------------------------------------------ --------------------- TREATMENT INFORMATION ------------------------------------------------------------------------------ --------------------- There are 2 basic schools of thought on treatment. The mainstream belief is that the first treatment for Lyme disease will be 21-30 days of oral antibiotics, usually Amoxycillin (often with Probenecid) or Doxycycline. In cases of treatment failure, which some claim must be confirmed by Spinal Tap, the next round will be 4-8 weeks of IV antibiotics, usually Rocephin or Claforan. Should that prove unsuccessful in relieving symptoms even if improvement had been noted, the doctors then look for alternative diagnoses such as " post-Lyme syndrome " (an unprovable ailment whose existence is questioned by many), CFS, MS, Lupus, Psychiatric problems, etc. The second school of thought departs from the mainstream in that it allows for treatment of Lyme disease as a chronic, persisting infection with long term antibiotic therapy. The doctors following this protocol believe in aggressive oral or IV therapy until a patient has either stopped improving or become symptom free. Their belief is that as long as a patient is progressing, the antibiotics are fighting active infection. If improvement ceases or does not occur, other antibiotic therapies may be tried or an alternative diagnosis sought. Any one or combination of antibiotics and helper drugs may be prescribed. Successful outcomes have been had with most protocols, but which one works best seems to be specific to each patient. The most common therapies are Zithromax (sometimes with Plaquinil or Amantadine), Amoxicillin (sometimes with Probenecid), Augmentin, Biaxin, Doxycycline, Tetracycline, IV Rocephin, IV Claphoran, IM Bicillin, or combinations of Penicillins/Cephalosporins with other antibiotics. Chances are, if you are reading this, you, or someone you know, has been failed by the current medical standards. AOLyme would not exist if the medical standards worked as well as the " experts " who control most of the research believe. Unfortunately, all too often, patients are treated too late or with too small a regimen of antibiotics and continue to be plagued by the symptoms of Lyme disease and wind up suffering longterm devastation from an illness that appears to know no boundaries. ------------------------------------------------------------------------------ --------------------- JARISH HERXHEIMER REACTION (HERX) ------------------------------------------------------------------------------ --------------------- One sure sign that treatment is working and that Lyme disease IS the root cause of one's troubles is the Herx. It is well documented in the treatment of other spirochetal illnesses, such as syphillis, that sometime shortly after the initiation of antibiotic therapy, a patient can experience a worsening of symptoms. This is caused by the release of toxins into the bloodstream as spirochetes are killed off. This generally starts within a few days to a couple weeks of initiation of treatment, and usually lasts, according to the books, a week or 2. Anecdotally, some Lyme patients experience this for greater lengths of time, sometimes 2 or 3 months, before symptoms begin to diminish or subside. Also, one interesting feature of Lyme disease, as noted by Dr. Burrascano in his treatment guidelines, is the cyclic nature of symptoms. Many with Lyme experience a regular relapse of symptoms during treatment, often on 30 day cycles. It is not clear whether these are herx's or just the nature of the illness. ------------------------------------------------------------------------------ --------------------- EMERGENCE OF NEW BORRELIA AND OTHER TICK BORN DISEASES ------------------------------------------------------------------------------ --------------------- Recent news articles have alerted the public to new outbreaks of tick-borne diseases in the US. Spread by the same ticks that cause Lyme disease, doctors must now be on the lookout for Erlichiosis (HGE) and Babesiosis. Symptoms are very similar and there exist no standard diagnostic tests for these illnesses, whose symptoms are similar to Lyme disease. Erlichiosis is of particular concern as it's symptoms come on strong, and rapidly after the tick bite, causing headache, fever, nausea, etc. Left untreated, it can lead to death. Doxycycline is generally found to be effective against Erlichiosis. Additionally, scientists have recently discovered other spirochetes that they believe are capable of causing Lyme disease (or " Lyme-like illness " as they like to call it). Those spirochetes have been found in the Lone Star tick and are believed to be responsible for a portion of the Lyme disease outbreak in Missouri and other midwestern states. There is no standard lab test for spirochetes other than Borrelia burgdorferi (Bb), although it is believed that some of the others will generate the same antibody response. ------------------------------------------------------------------------------ --------------------- READING MATERIALS - Recommended Books ------------------------------------------------------------------------------ --------------------- " Coping With Lyme Disease " , Lang,1993, Henry Holt, $12, Paperback This is an easy to read book that covers every aspect of Lyme Disease, from symptoms and diagnostics to treatment protocols to the political problems we face. It is an invaluable resource and a must read for anyone trying to determine whether they are suffering from Lyme Disease, or trying to understand the illness. " Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders " , Vanderhoof-Forschner, 1997, Wiley. $14.95, Paperback. A very informative book written by the Founder of the Lyme Disease Foundation. Easy to read, everything from the history, signs and symptoms, tests, prevention, and support sites. A must have for the Lyme Disease Patient. " Lyme Disease Survival Manual " , Tom Grier,1995, Pedagogue Press, $7.95, Spiral Bnd, (Only available via mail order: Pedagogue Press, 902 Grandview Avenue, Duluth, MN, 55812. Include $1.00 for S & H) A very comprehensive manual on all aspects of Lyme Disease. It includes controversial topics such as hypothermia, malaria therapy, MS & Lyme Disease. It also includes valuable information on Lyme history, politics and testing methods. " Osler's Web " , Hillary , 1996, Crown Pub, $30, Hard Cover Chronicles the CFS epidemic in the USA and provides terrific insight into the way newly emerging diseases are mishandled by the medical community, CDC and NIH. The parallels between CFS and Lyme Disease are incredible. This book is a great read. " The Widening Circle " , Polly Murray, 1996, St. 's Press, $24, Hard Cover The history of Lyme disease as told by the woman who's 10 year pursuit of an answer for her family's medical mystery led to the 1975 discovery of the tick borne disease outbreak that had taken root in her town, Lyme, Connecticut. While the book is largely a chronicle of her own struggle with the illness, and with the medical community, it does offer some insight into events of the last 2 decades. ------------------------------------------------------------------------------ --------------------- READING MATERIALS - Other Books ------------------------------------------------------------------------------ --------------------- " Lyme Disease: The Cause, the Cure, the Controversy " , Alan G. Barbour M.D., 1996, s Hopkis University Press, $16, Paperback This book is an important read if you want to gain insight into how those with a more biased and conservative view of chronic Lyme disease perceive those of us who have it. Unless you believe that Lyme disease is easily treated and cured, prepare to be angered by this book and sorry that you paid for it (better yet, borrow it from a friend or library). ------------------------------------------------------------------------------ --------------------- READING MATERIALS - Recommended Articles/Studies ------------------------------------------------------------------------------ --------------------- " Dr. Burrascano's Treatment Guidelines " , Dr. ph Burrascano Includes symptom chart, diagnostic and treatment information. " The Neuropsychiatric Manifestations of Lyme Borreliosis " , Dr.'s Fallon, Nields, Burrascano, Liegner, DelBene, Liebowitz; Psychiatric Quarterly, Spring 1992 Possibly the best piece ever written on the devastating effects of Lyme Disease. Both of the above are available on the internet, or can be sent to you directly via e-mail by contacting Ameronlyme@.... ****************************************************************************** **************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Lyme Disease is very difficult to eradicate. Long-term IV doxycycline therapy is necessary. Check out http://www.2.lymenet.org Dr. Burrascano, Jr. has his treatment guidleines posted here. Ethel > Sala wrote: > > Hi Group.............does anyone have information on Lyme disease - > specifically the duration of antibiotic therapy. A friend is currently > doing antibiotics and we are curious because her doctor said 3 weeks > is sufficient. Does this sound correct? You know how it goes - > sometimes we have to educate the doctors, and any information she can > take to him would be helpful. > > Thanx, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 re Lyme antibio--3 weeks isn't even close. Depends on the severity of course. I have 3rd stage Lyme and have been on antibio for 7 years. Wish I would have gotten my diagnosis 2 years earlier and hi dose/long term antibio--would have spared a lot of grief. I was on very high dose IV's for 10 months (1gram a day -- maybe more, can't recall) She/you can email me if you want more info, L In a message dated 99-08-04 23:40:06 EDT, you write: << Hi Group.............does anyone have information on Lyme disease - specifically the duration of antibiotic therapy. A friend is currently doing antibiotics and we are curious because her doctor said 3 weeks is sufficient. Does this sound correct? You know how it goes - sometimes we have to educate the doctors, and any information she can take to him would be helpful. Thanx, >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1999 Report Share Posted September 24, 1999 Dorothy, I just started taking anti-depressants, so I don't know if they are working well or not. But I know for me and just about everything I've read, that every time I start a new drug, it makes me sick the first two or three days, then your body adjusts to it. I also read the entire inserts, warnings, contraindications, etc. I got a Prescription Drug book too, and I always read everything about the drug before I take it. Then at least you know what symptoms to look for that would indicate you should let your doctor know and probably not take. I know a lot of anti-inflammatories are dangerous, but there are new designers ones out now without the bad side effects or dangers, one for arthritis type pain is Celebrex. My husband just started taking it for gout, it may not be for you, but it is only one of the new fangled ones out there that are safer to take then the old anti-inflammatories. With chronic pain, I know its easy to get so depressed, so I recommend the anti-depressants. Its seems like a normal person can handle one or another - either pain, or depression, or fatigue, but when you have chronic pain all the time, it is impossible not to get depressed. So treating that really helps. There are also a lot of new designer anti-depressants, so you don't have to worry about taking something as strong as Prozac or Valium. Good luck and hang in there - talk to your doctor if your current symptoms from the new meds continues. Good luck Vicki [Lyme-aid] lyme I started taking ultram - a pain med and I'm finding that it's probably not for me - it gives me a headache, sick stomach and tired! I'm wondering it anyone has taken that maybe these symptoms go away if you keep taking it? I had a internal bleed 2 months ago from naproxen - so it anyone is taking that for anti-inflammatory conditions - be careful! I was taking 1000 mg/day for 6 months and ended up in the hospital with internal bleeding. Of course after I had to bleed is when I hear all the horror stories about naproxen! I'm going to a Lyme sensitive clinic in November to hopefully have someone confirm or at least listen and tell me if I may still have lyme after my primary telling me in Jan 1997 that after the 30 day antibiotic treatment it's gone....and me having some major problems for the 1st time in my life 4 months after having lyme. It's really hard getting anyone to listen, let alone confirm anything. I have major problems with my knee, hips & lower back - 3 yrs now and counting.....it sure does get hard sometimes. Has anyone with lyme & these symptoms ever gotten relief with anti-depressants? I've never taken them, but I am considering it at this point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Hi Dorothy, Welcome to the list, hope you can find some answers here to your many questions. Sounds like you have had a tough time with the NSAID drugs. I take Vicoprofen for my pain, after a long time of taking Darvocets, and building up an immunity, I too worry now about the Vicoprofen's effect on my stomach. I imagine blood tests may answer that question for me, soon enough...right now I have no stomach distress. I am curious where the Lyme-sensitive clinic is located? What state? A shame you have to wait so long to get there. You asked about anti-depressants, I do well on Paxil, when I first started taking it, I told my doctor I noticed a relief in my pain level, he told me the pain was the same, but my brain was looking at it differently and I was able to deal better. I really started taking Paxil because the whole business of dealing with a chronic illness really got me down, and it has helped tremendously. Let us know what state you live in, and I hope we can help you. Hugs, Marta NJ - I started taking ultram - a pain med and I'm finding that it's probably not for me - it gives me a headache, sick stomach and tired! I'm wondering it anyone has taken that maybe these symptoms go away if you keep taking it? I had a internal bleed 2 months ago from naproxen - so it anyone is taking that for anti-inflammatory conditions - be careful! I was taking 1000 mg/day for 6 months and ended up in the hospital with internal bleeding. Of course after I had to bleed is when I hear all the horror stories about naproxen! I'm going to a Lyme sensitive clinic in November to hopefully have someone confirm or at least listen and tell me if I may still have lyme after my primary telling me in Jan 1997 that after the 30 day antibiotic treatment it's gone....and me having some major problems for the 1st time in my life 4 months after having lyme. It's really hard getting anyone to listen, let alone confirm anything. I have major problems with my knee, hips & lower back - 3 yrs now and counting.....it sure does get hard sometimes. Has anyone with lyme & these symptoms ever gotten relief with anti-depressants? I've never taken them, but I am considering it at this point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Dorothy, I am on Celexa, though it has helped some with the pain it has helped much emotionally. But I have the same problem with the lower back and hips, especially the left hip and my left knee....I go in for x rays on my knees soon. I know what you mean it really disables me from keeping my house clean cause any form of bending and there locks up my back and hips...just standing up to long sometimes causes a lot of pain or lifting. If I ever attempt the house it is with my scooting on the floor. Cyntha Landon Idaho [Lyme-aid] lyme I started taking ultram - a pain med and I'm finding that it's probably not for me - it gives me a headache, sick stomach and tired! I'm wondering it anyone has taken that maybe these symptoms go away if you keep taking it? I had a internal bleed 2 months ago from naproxen - so it anyone is taking that for anti-inflammatory conditions - be careful! I was taking 1000 mg/day for 6 months and ended up in the hospital with internal bleeding. Of course after I had to bleed is when I hear all the horror stories about naproxen! I'm going to a Lyme sensitive clinic in November to hopefully have someone confirm or at least listen and tell me if I may still have lyme after my primary telling me in Jan 1997 that after the 30 day antibiotic treatment it's gone....and me having some major problems for the 1st time in my life 4 months after having lyme. It's really hard getting anyone to listen, let alone confirm anything. I have major problems with my knee, hips & lower back - 3 yrs now and counting.....it sure does get hard sometimes. Has anyone with lyme & these symptoms ever gotten relief with anti-depressants? I've never taken them, but I am considering it at this point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Do you know how to contact them? I am really interested in this. We are having a yard sale this week and I am sooo behind in posts but I've got to check this out. Re: [ ] STACEY! STACEY! STACEY! Did you see the lost from yesterday. The Lyme division of Columbia U in NYC is doing a study on autism and Lyme disease his name is Dr. Fallon Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 ---Stacey, I checked it out and it is limited to NJ and Conn. They are taking the number of autism cases in highly endemic areas for lyme and then taking the number of " average " autism cases in non-endemic areas of the country and seeing if the lyme endemic areas have higher cases of autism. I do not think the study is open. Here is a link: http://www.columbia-lyme.org/flatp/childstud-n.html did you get all of my e-mail links? Patti In @y..., " Stacey " <staceydaniel@m...> wrote: > Do you know how to contact them? I am really interested in this. We are having a yard sale this week and I am sooo behind in posts but I've got to check this out. > Re: [ ] STACEY! STACEY! STACEY! > > > Did you see the lost from yesterday. The Lyme division of Columbia U in NYC > is doing a study on autism and Lyme disease > > his name is Dr. Fallon > > Rich > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 karen, A friend of mine is investigating the possibility that she has Lyme. A few years back, her body just basically crashed. She has an incredible amount of gut issues, too. I'll keep you posted. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 >> I know someone used > to be in this group whose son was (finally) tested and found to have > Lyme. This was Patti. If you don't have her email address, let me know. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 My Igenex test cost $617.00. El rheumatic lyme One more question on costs: I went to the Igenex and Bowen sites but couldn't find prices for these Lyme tests. Does anyone know? Has anyone experienced cognitive impairrment with Lyme that improved with treatment? Thanks, Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Yes, negative for Lyme but positive for Babesia on another test. Kathy Lintzenich <mykittypaws@...> wrote: I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Do you also have ms and is the babes easier to treat than Lyme? Have you gotten better? Any info would be greatly appreciated. My parents live in Southern Ohio and my nephews go deer hunting almost every night during season. I go home frequently. and I had an unexplained circle that looked like ringworm 12 years ago but no discernable bite in the circle. I just went to the pharmacist and got ringworm medicine. Best, Kathy Re: [low dose naltrexone] lyme Yes, negative for Lyme but positive for Babesia on another test. Kathy Lintzenich <mykittypawsadelphia (DOT) net> wrote: I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 Kathy, No, don't have MS. Have CFS/diastolic cardiomyopathy and was able to work average of 30 hrs/wk. until bitten by tick in 1996 and contracting babesia which has an affinity for the heart whereas lyme goes for the joints, cns, etc.. Don't know which is easier to treat but treatment unsuccessful for me probably because cardiac output/blood not adequate to reach all parts of body so the babesia can easily hide or avoid abx, mepron, etc. Have had some improvement with variety of treatments but think most disability at this point is result of low cardiac output so only hope now is stem cells or a porcine heart signaling factor product that may become available in mid to late 2007. Regards, Steve B. Kathy Lintzenich <mykittypaws@...> wrote: Do you also have ms and is the babes easier to treat than Lyme? Have you gotten better? Any info would be greatly appreciated. My parents live in Southern Ohio and my nephews go deer hunting almost every night during season. I go home frequently. and I had an unexplained circle that looked like ringworm 12 years ago but no discernable bite in the circle. I just went to the pharmacist and got ringworm medicine. Best, Kathy Re: [low dose naltrexone] lyme Yes, negative for Lyme but positive for Babesia on another test. Kathy Lintzenich <mykittypawsadelphia (DOT) net> wrote: I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 Steve, I am understanding that you have something like mycoplasmal bacterium growing in your cell membrane. The things I know which strengthen the heart are magnesium orotate, serapeptase. bromelain, acetyl-l-carnitine and coQ10. Have you considered chelation therapy with some vitamin C IV injections along with a cocktail of other vitamins? IV vitamin C can kill alot of bacteria. I wish you the best , Kathy Re: [low dose naltrexone] lyme Yes, negative for Lyme but positive for Babesia on another test. Kathy Lintzenich <mykittypawsadelphia (DOT) net> wrote: I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 I am actively pursuing a Lyme diagnosis. Turns out that the trendy tests such as IgeneX aren't all that accurate. My test from Fry Laboratories indicated I had a small amount of Bartonella Spp. My Lyme Literate Medical Doctor (LLMD) stated that everyone has bartonella. Based on an extensive medical history, EKG, and a hands on examination, I was prescribed about 14 tubes worth of blood testing and 100mg doxycycline (2 per day), and a follow up appointment in June. So far I've been on the doxycycline for one month. It's been a strange month. At first my normally quasi worthless right leg worked better. The past three days I'm walking around the house with two canes! I backed the doxycycline down to 1 tablet per day, per physician's instructions. Lyme is a " stealth " disease and can hide. The tests aren't as reliable as folks make them out to be. The diagnosis is clinical. Stories abound of people having to be stuck a half dozen times to finally get a positive diagnosis. To me and even the FDA, testing into compliance is very bad science. Just ask Barr laboratories about their fiasco that changed an industry. http://www.gmp1st.com/barr9.htm My Lyme blood tests may be found in the " Pics " section of my MySpace profile. My stool tests are also posted there. Look for the blue circles or me throwing a toilet, respectively. PS Lyme, not Lymes, is the name of a town. > > 2a. Re: Lyme disease, what is the correct test? who here was positive > Posted by: " marlaprendergast " kws11@... marlaprendergast > Date: Tue Apr 15, 2008 4:19 am ((PDT)) > > Its really hard to know what to believe. On the one hand I sort of > wish the doctor would just give me the 6 weeks of doxy JUST IN CASE,...... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 supposedly Ken Singleton's book just out " the Lyme Disease Solution" may mention LDN--but I havent yet read it. Going by other so called comprehensive books I did invest in--theyre a rehash of all thats known and free on the 'net..and the mention of any treatment is that--a line or few about how some are using this , that or the other. the ONLY books so far worth their price and dead trees are Buhner's and Zhang's ALL of Rosner's ( esp. "top ten treatemsnt" and "Rife") and S.Forsgren's ( better health guy) and any other in that genre of " all you want to know about" are USELESS IMHO. As an advocate I used to buy and review them all--then realized that I was wasting time and money and that many who wanted to believe would ignore anything those of us who had refuting info would say...and those who were clever enough would on their own discount the info inside...so Ive stopped...BUT this looks intriguing and I DO have the interest in LDN so whats another 25 buck?? I will order it and take yet another chance--and when I do I will let you guys know what if anything he does say re: LDN for Lyme Finette Get the MapQuest Toolbar, Maps, Traffic, Directions More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 That is true Bev, my partner also spent a bit of time in ‘the jungle’ in Africa. Also, I’ve yet to hear UK or anywhere else is a ‘Lyme free’ zone – a bit like alrightguy123 being told he hadn’t been to two specific areas well that confirms he doesn’t he have it and he does. Well, only way to find out. Thanks, Jayne Please sign the petition to the UK Govt to fund trials for LDN http://petitions.number10.gov.uk/LowDNaltrexone/ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of cat707k Sent: 06 March 2009 03:48 low dose naltrexone Subject: [low dose naltrexone] Lyme Lyme is indeed everywhere - an even if it`s not especially prevalent in someone`s particular town, most people have travelled in their lives and visited other countries or places. Especially people from the UK - it being such a tiny country, people travel abroad all the time for their vacations. I always thought it was a little odd that people say you can`t have Lyme unless you live in a certain area! Bev from SF but who`s a Brit who`s travelled all over the place! No virus found in this incoming message. Checked by AVG. Version: 7.5.557 / Virus Database: 270.11.8/1986 - Release Date: 05/03/2009 19:32 No virus found in this outgoing message. Checked by AVG. Version: 7.5.557 / Virus Database: 270.11.8/1986 - Release Date: 05/03/2009 19:32 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Lyme is all over the world. From what I've read, the European version of Lyme is a little different than the North American version I've seen a YouTube clip on Canadians coming to the USA for their Lyme treatment. I had major night sweats early on in my sickness. The sheets had to be changed I had sweat so much. My sickness started out as optic neuritis in 2000. After my optic neuritis I talked the family doc into testing me for Lyme. The test, standard CDC test I assume, was negative for Lyme. Eventually I was diagnosed TWICE with MS. In 2006 I went on medical disability retirement. The MS drugs like Rebif, Copaxone were making me worse. The LDN was sort of my favorite as at least it did nothing bad. No needles either. I was still losing strength. Time was spent studying at the library and I felt my sickness may be Lyme disease. Lyme is a " stealth " disease. It can form cysts in response to antibiotics. It can hide inside our cells. It can live without it's own cell walls. It is CRITICAL to hire a competent Lyme Literate Medical Doctor (LLMD) to diagnose and treat Lyme. There is a You Tube clip on Canadians coming to the USA for their Lyme disease treatment. I found my LLMD by telephoning Lyme awareness organizations to interview their people. For a LLMD referral http://www.lymediseaseassociation.org/referral/ List of Lyme symptoms (button on left side) www.CanLyme.com Trailer for the Lyme documentary " Under Our Skin " http://www.youtube.com/watch?v=sxWgS0XLVqw & Video on Lyme disease misdiagnosis: http://vimeo.com/2354218 > > Lyme is indeed everywhere - an even if it`s not especially prevalent in someone`s particular town, most people have travelled in their lives and visited other countries or places. > Especially people from the UK - it being such a tiny country, people travel abroad all the time for their vacations. I always thought it was a little odd that people say you can`t have Lyme unless you live in a certain area! > Bev from SF but who`s a Brit who`s travelled all over the place! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2009 Report Share Posted October 11, 2009 Here's my lyme thread from my LDN website http://ldn.proboards.com/index.cgi?board=links & action=display & thread=926 , LDN user 6 years for progressive MS ===================== > > does anyone know how to find a lyme literate doctor in the US? Is there a blood test to be done? What are the usual symptoms? Is there a certain part of the country where lyme is prevalent and other parts that don't have it? thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2009 Report Share Posted October 11, 2009 My original CDC Lyme test, eight (8) years ago, indicated I did not have Lyme disease. I tested " not positive " for Lyme disease via IgeneX. IgeneX wanted more blood and more money. NONE of these tests are iron clad " yes or no " . If a person is going down this path, FIRST hire the LLMD, then use whatever test that doc likes to use. My test from Fry Laboratories indicated I have bartonella. Tests from Spectracell (?) indicate I have / had mono, rocky mountain spotted fever, Herpes VI, and a couple of other co-infections. My Lyme diagnosis was based on a six (6) page history, hands on exam (poking and prodding), an EKG, and a test prescription of doxycycline looking for a herxheimer, aka " herx " reaction. These herxes are like being run over by a Mack truck and left on the road dead. There is NO " oh, I think I had a herx " to it. These things are more of a " oh-my-gawd, what is going on??? " type of incident. Since starting March 2008 my treatment of antibiotics, antihistamines, war on dust mites, etc I've been through many ups and downs. My right hand goes from not working at all to working just fine. My " surprise poopies " have gone away. This time of rancom symptoms are expected. With my CRAB drugs all I had was loss of strength. > > I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 In the movie " Star Wars " Luke use the " Force " . Us LDNers can use the " Search " http://www.lymediseaseassociation.org/ upper hand left hand corner is a bjtton to help find a LLMD. Many states do NOT have any Lyme Literate Medical Doctors (LLMDs). Most of the treatments use long term antibiotics. This causes great concern in the organized medical world and some LLMDs have had their licenses suspended. This has caused a near underground movement to find a LLMD. I have not heard an reliable studies, not even reliable stories of non-antibiotic therapy bringing back any chronic Lyme patients back to health. I prefer telephoning Lyme Awareness / education groups to start finding LLMDs. The voice communication brings much to the conversation and makes for a more productive interaction. Typical Symptoms: www.CanLyme.com The normal family doc will say we must have been to one of two places n the east coast before we get a positive diagnosis. I have not been to either of those two areas, and have been diagnosed with Lyme disease. Lyme disease is all over the country. I think it's Montana that does not officially have Lyme disease, but, it does have similar tick borne diseases. > > does anyone know how to find a lyme literate doctor in the US? Is there a blood test to be done? What are the usual symptoms? Is there a certain part of the country where lyme is prevalent and other parts that don't have it? thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 I have Lyme's and just found out after years of suffering...i went mis-diagnosed for years. That's why i started LDN...i was so sick with no answers. So i found out i now have chronic Lyme's, at the same time i started LDN. I am glad to be on LDN as i go down this scary road of Lyme treatment and herxing. I am on Samento and Plaqunil for the Lymes, and i was taking 3 drops of samento but had to go down to two...I AM HERXING SO BAD!! I am so sick and every day my herxing gets worse..all kinds of twitches, muscle pain, and it i am suffering terrible..not knowing in what weird form my herxing will show itself next. This is so scary! Terri From: SirR <alrightguy123@...>Subject: [low dose naltrexone] Re: lymelow dose naltrexone Date: Sunday, October 11, 2009, 9:16 PM My original CDC Lyme test, eight (8) years ago, indicated I did not have Lyme disease.I tested "not positive" for Lyme disease via IgeneX.. IgeneX wanted more blood and more money. NONE of these tests are iron clad "yes or no". If a person is going down this path, FIRST hire the LLMD, then use whatever test that doc likes to use.My test from Fry Laboratories indicated I have bartonella. Tests from Spectracell (?) indicate I have / had mono, rocky mountain spotted fever, Herpes VI, and a couple of other co-infections.My Lyme diagnosis was based on a six (6) page history, hands on exam (poking and prodding), an EKG, and a test prescription of doxycycline looking for a herxheimer, aka "herx" reaction.These herxes are like being run over by a Mack truck and left on the road dead. There is NO "oh, I think I had a herx" to it. These things are more of a "oh-my-gawd, what is going on???" type of incident.Since starting March 2008 my treatment of antibiotics, antihistamines, war on dust mites, etc I've been through many ups and downs. My right hand goes from not working at all to working just fine. My "surprise poopies" have gone away. This time of rancom symptoms are expected. With my CRAB drugs all I had was loss of strength.>> I would like to know if anyone has tested negative for Lyme from Igenix? I don't want to sound toxic but I am a skeptic of many things. Otherwise, one would go broke. I am considering doing the panel. However, I want to know if all the results have been positive from that lab. Could they have some type of false hope for the people who have auto-immune conditions? Or is this real hope? I am all for the positive, believe me. I am just curiously hopeful... Best, Kathy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 The trace mineral Molybdenum was suggested to reduce herxing when I was dealing with severe Candida many years ago. You may want to look into whether it can help with Lyme herxing. Garnet -------- http://www.ldndatabase.com/forum LDN_Information Dr Steele, ITV's This Morning supporting LDN Terri wrote: > > > I have Lyme's and just found out after years of suffering...i went > mis-diagnosed for years. That's why i started LDN...i was so sick with > no answers. So i found out i now have chronic Lyme's, at the same time i > started LDN. I am glad to be on LDN as i go down this scary road of Lyme > treatment and herxing. I am on Samento and Plaqunil for the Lymes, and i > was taking 3 drops of samento but had to go down to two...I AM HERXING > SO BAD!! I am so sick and every day my herxing gets worse..all kinds of > twitches, muscle pain, and it i am suffering terrible..not knowing in > what weird form my herxing will show itself next. This is so scary! > Terri > > > > > From: SirR <alrightguy123@...> > Subject: [low dose naltrexone] Re: lyme > low dose naltrexone > Date: Sunday, October 11, 2009, 9:16 PM > > > My original CDC Lyme test, eight (8) years ago, indicated I did not > have Lyme disease. > > I tested " not positive " for Lyme disease via IgeneX.. IgeneX wanted > more blood and more money. NONE of these tests are iron clad " yes or > no " . If a person is going down this path, FIRST hire the LLMD, then > use whatever test that doc likes to use. > > My test from Fry Laboratories indicated I have bartonella. Tests > from Spectracell (?) indicate I have / had mono, rocky mountain > spotted fever, Herpes VI, and a couple of other co-infections. > > My Lyme diagnosis was based on a six (6) page history, hands on exam > (poking and prodding), an EKG, and a test prescription of > doxycycline looking for a herxheimer, aka " herx " reaction. > > These herxes are like being run over by a Mack truck and left on the > road dead. There is NO " oh, I think I had a herx " to it. These > things are more of a " oh-my-gawd, what is going on??? " type of incident. > > Since starting March 2008 my treatment of antibiotics, > antihistamines, war on dust mites, etc I've been through many ups > and downs. My right hand goes from not working at all to working > just fine. My " surprise poopies " have gone away. This time of rancom > symptoms are expected. With my CRAB drugs all I had was loss of > strength. > > > > > > I would like to know if anyone has tested negative for Lyme from > Igenix? I don't want to sound toxic but I am a skeptic of many > things. Otherwise, one would go broke. I am considering doing the > panel. However, I want to know if all the results have been positive > from that lab. Could they have some type of false hope for the > people who have auto-immune conditions? Or is this real hope? I am > all for the positive, believe me. I am just curiously hopeful... > Best, Kathy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 Here's an article that was posted to the DMSO list recently. We have been talking about it some there and hearing some very interesting reports of increased energy and less brain fog. http://www.newtreatments.org/Adrenals/ga/303/Molybdenum%20used%20for Garnet -------- http://www.ldndatabase.com/forum LDN_Information Dr Steele, ITV's This Morning supporting LDN Terri wrote: > thank you Garnet...i will look into it since i am hypo-thyroid as > well...that is an issue for me. > terri > > > > > > > > From: SirR <alrightguy123@... > <http://us.mc447.mail./mc/compose?to=alrightguy123 >> > > Subject: [low dose naltrexone] Re: lyme > > low dose naltrexone > <http://us.mc447.mail./mc/compose?to=low dose naltrexone > > > Date: Sunday, October 11, 2009, 9:16 PM > > > > My original CDC Lyme test, eight (8) years ago, > indicated I did not > > have Lyme disease. > > > > I tested " not positive " for Lyme disease via IgeneX.. IgeneX > wanted > > more blood and more money. NONE of these tests are iron clad > " yes or > > no " . If a person is going down this path, FIRST hire the > LLMD, then > > use whatever test that doc likes to use. > > > > My test from Fry Laboratories indicated I have bartonella. Tests > > from Spectracell (?) indicate I have / had mono, rocky mountain > > spotted fever, Herpes VI, and a couple of other co-infections. > > > > My Lyme diagnosis was based on a six (6) page history, hands > on exam > > (poking and prodding), an EKG, and a test prescription of > > doxycycline looking for a herxheimer, aka " herx " reaction. > > > > These herxes are like being run over by a Mack truck and left > on the > > road dead. There is NO " oh, I think I had a herx " to it. These > > things are more of a " oh-my-gawd, what is going on??? " type > of incident. > > > > Since starting March 2008 my treatment of antibiotics, > > antihistamines, war on dust mites, etc I've been through many ups > > and downs. My right hand goes from not working at all to working > > just fine. My " surprise poopies " have gone away. This time of > rancom > > symptoms are expected. With my CRAB drugs all I had was loss of > > strength. > > > > > > > > > > I would like to know if anyone has tested negative for > Lyme from > > Igenix? I don't want to sound toxic but I am a skeptic of many > > things. Otherwise, one would go broke. I am considering doing the > > panel. However, I want to know if all the results have been > positive > > from that lab. Could they have some type of false hope for the > > people who have auto-immune conditions? Or is this real hope? > I am > > all for the positive, believe me. I am just curiously hopeful... > > Best, Kathy > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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