9. Lyme disease patients previously misdiagnosed with fibromyalgia ************************************************************************ as of 4 May 1999 Sources: Google Usenet Advanced Search http://groups.google.com/advanced_group_search Search the LymeNet Flash Discussion http://www2.lymenet.org/domino/flash.nsf/$$search ----- Cathy Morrissey http://www.lymealliance.org/html/march.html Also see Cathy Morrissey on Lyme disease at: http://www.ocean-beach.com/_tick/tick_morrissey.htm mailto:cfmorriss@aol.com ----- Mary Shadley mailto:Shadey503@aol.com TEN YEARS WITH LYME DISEASE FOR CALHOUN COUNTY, MICHIGAN RESIDENT http://www.lymealliance.org/PersonalStories/PersonalArchive1/Personal6/personal6.html ----- Subject: Re: SPECT SCANS Date: 1 May 1999 13:33:23 GMT From: debtoo2773@aol.com (Debtoo2773) Newsgroups: sci.med.diseases.lyme I was diagnosed with lyme in '92, horrid fatigue, treated, relapse, diagnosed fibromyalgia, sleep study in '95 showed mild sleep apnea,alpha waves in the delta very typical of fibromyalgia. Take .50xanax at night knocks me out. very little rem sleep.Usually need to nap about 3pm. Each day seems like 2 days. Sleep study may reveal specific problem,but lyme was the underlying cause of the problems. Improvement with iv oral flagyl has gotten problems under control. best to all deb [No longer available at sci.med.diseases.lyme archives] ----- Subject: Re: Has Anyone Tested Positive For Epstein Barr? Date: 25 Feb 1999 00:00:00 GMT From: hipTopper@webtv.net (Shara Topper) Newsgroups: sci.med.diseases.lyme My daughters first diagnosis was chronic EB virus. Then it was CFS, then fibromyalgia, and finally, five years later, Lyme disease. Wish they"d known at the beginnig!!! Re: Has Anyone Tested Positive For Epstein Barr? http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=86b50a2b10d8114e,8&seekm=964-36D61F6C-2%40newsd-284.iap.bryant.webtv.net#p ----- Subject: Re: Fibro, Lupus, Lyme! Date: 23 Feb 1999 00:00:00 GMT From: bailieboy@aol.com (BailieBoy) Newsgroups: sci.med.diseases.lyme Hi Allison, I went through the very same thing. Had rising sed rates for two years and was misdiagnosed with both fibromyalgia (which does not cause high sed rates) and lupus. I was even treated for lupus although I never had a positive ANA test. It amazes me that I finally diagnosed myself and asked my rhumatologist to test for Lyme. The western blot came back positive and it turns out I have had lyme for my guess maybe 8 years!!!!!!!!!!!! I am starting IV Rocephin this afternoon. I feel so angry it went on for so long and now I have serious neruologic problems. Be assertive with your physicians!!! You really have to be your own advocate. Good luck. Lisa Re: Fibro, Lupus, Lyme! http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=b77a407dc0c41eb5,5&seekm=19990223145941.24212.00000038%40ng01.aol.com#p ----- Subject: just diganosed -now what? Date: 11 Dec 1998 00:00:00 GMT From: Gloria.M.Comstock@dartmouth.edu (Gloria M. Comstock) Organization: Dartmouth College Newsgroups: sci.med.diseases.lyme Hello, I'm new to this. I have Fibromyalgia and have been being treated for that. Inspite of everything, I just wasn't getting anywhere. My doctor said at this point, it was worth trying a blood test for Lyme. He just called - both tests come back positive. TOday is Friday and I wasn't scheduled to go back until 12/30 - but he wanted me in sooner - so I go on Tuesday, 12/15. All I know is that we're going to talk antibiotics. Anyone with suggestions? Glo just diganosed -now what? http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=5dabafe392a956be,4&seekm=755sei%245jk%241%40dartvax.dartmouth.edu#p ----- Name: BRUCE Email:REDZ@PRODIGY.NET NY Date: Thursday, October 15, 1998 at 02:02:56 Comments: I HAVE HAD LYMES FOR 2 YEARS.IT WAS MISDIAGNOSED FOR CHRONIC FATIGUE SYNDROME,FIBROMYALGIA,AND SOME KIND OF SCLEROSIS.I KNEW IT WAS LYMES BECAUSE OF BULLSEYE BITE & SYMPTOMS,BUT COULD NOT FIND A DOCTOR WHO WAS LITERATE IN THIS DISEASE.LUCKYILY I FINALLY DID.CURRENTLY I AM BEING TREATED WITH I.V. ANTIBIOTICS AND STARTING TO FEEL BETTER.I KNOW HOW HARD IT IS TO STAY STRONG,BUT DON'T GIVE UP KEEP FIGHTING TIL YOU FIND A GOOD DOCTOR WHO BELEIVES IN LONG TERM ANTIBIOTICS! Time For Truth Guestbook http://www.lexmall.com/LYME/Guestbook/guestbook.html ----- Subject: Fibro vs. Lyme Disease Date: 18 May 1998 00:00:00 GMT From: Sandra Smith Newsgroups: alt.med.fibromyalgia Recently after seeing a new physician at a pain management clinic, I was referred to a neurologist to be tested for Lyme disease. The physician at the pain clinic told me that due to my history and existing "symptoms" that I shoud be checked for Lyme disease to rule it out as a causative factor in the all over body pain I have had since I was 40. I had no problem with being checked for Lyme as I was and am 100% committed to resolving the cause of the pain rather than taking pain medication the rest of my life. The middle of last month the special blood tests results confirmed me positive for Lyme disease and now I am receiving antibiotic treatment for this condition which like fibro, cannot be cured. http://cassia.jerseycape.net/essay.htm http://www.lymenet.org/ http://lymealliance.org/html/medical.html sci.med.diseases.lyme (news group) In checking old medical records, I found where I had been dx'd as long ago as 1985 as having fibro but the physician treating me never bothered to share this information with me. I was not "aware" of fibro until a family member found the alt.med.fibromyalgia ng and told me about it in 1995. I then saw a rhumatologist in October and received a confirming dx of fibromyalgia. I have had countless blood testing performed since I was 28 and first started having joint pain in all movable parts that was not caused by RA. I always assumed that the normal blood testing I had done would show up if I had Lupus or Lyme, both conditions along with MS and some other diseases are often misdiagnosed when the patient actually has Lyme disease. This is not the case. It takes a Lyme Literate Physician, special testing, and good clinical obervation as well as detailed medical history to diagnose Lyme. The bacteria that cause Lyme disease can and do invade all organs resulting in many many symptoms that are often ignored, especially by physician's who have treated you for years. Many of the symptoms I've had over the years I stopped mentioning to my physicians because they didn't seem to think they were important or anything to be concerned about. Not! Please do check out these URL's and at least read the information and a special essay written by a physician who had Lyme disease. When I read this essay after being d'xd with LD, I thought to myself, these are the things I have been trying to get doctors to pay attention to for years and years. I am just concerned that others like me may not have been checked properly for the bacteria causing Lyme disease and that is the reason for my post. Sandra Smith Fibro vs. Lyme Disease http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3552986e546ddfde,7&seekm=35603C31.FA58C599%40ibm.net#p ----- Subject: FMS Diagnosis & Complacency (A Cautionary Tale) Date: 26 Apr 1998 00:00:00 GMT From: "Lana Z." Newsgroups: alt.med.fibromyalgia Although I think most people will assume this message does not apply to them, I still feel a moral obligation to post this information. After many years of muscle pain and an ever-growing list of symptoms, I was finally diagnosed in late 1996 with FMS and felt relieved that someone had put a name to this "thing" I had suffered from for so many years. In May of that year I started going to an alternative MD who was treating me with vitamin and hydrogen peroxide IV's and managed to turn my health around. As I started to feel better I tapered off and eventually ended the IV's and just continued on oral supplements. At the end of 1997 I decided to see an alternative DO, primarily because of a severe backache of many years duration that never seemed to abate. In my first office visit he asked me how many times a had been tested for Lyme. I replied, "Never." I though it an odd question, since I live in New York City and had previously lived in Madrid, Seville and London--not exactly rural locales. Well, my Western Blot for Lyme came out positive, I took antibiotics for 6 weeks, was re-tested and still came out positive. The antibiotics did not help and in fact my previous symptoms are returning. I am presently waiting for approval from my insurance company to have a mid-line catheter installed so I can have IV antibiotic therapy for 21 days. I have since discovered that some alternative doctors use hydrogen peroxide IV's to treat Lyme because of its ability to kill bacteria, yeasts, viruses, etc. and to raise body temperature. In retrospect, I attribute the fact that I was so much better during hydrogen peroxide therapy to my having Lyme Disease. If you--like me, think you couldn't possibly have Lyme because you live in a city, please be aware that: - numerous bacteria- infected ticks were found in a large park in New York City, - it has been determined that fleas can carry the bacteria and possibly mosquitoes, - Lyme Disease can lie dormant for many years, - about 50% of the infected population do not remember being bitten by a tick, - nymphal ticks are no bigger than a poppy seed and very hard to spot, - 40% of those infected do not develop a bullseye rash. I found it extremely difficult to accept the fact that I have Lyme Disease--even after my second Western Blot came out positive. Only after doing a lot of research on-line and exchanging E Mail with other Lyme sufferers did I reconcile myself to the fact. As it happens, I have about 75% of all possible symptoms for hypothyroidism (Lyme can affect the thyroid) and have low body temperatures (the spirochetes like it cold). I have degenerative disk disease (one of the symptoms of Lyme is arthritis). I had optic neuritis in 1990 and began looking for possible MS (Lyme can also cause optic neuritis and other vision problems). My point is that the diagnosis you get depends very much on what type of doctor you see. So many diseases have the same or overlapping symptoms that a diagnosis is very much like the story of the blind men and the elephant. I urge everyone to remember that FMS is a syndrome and not a disease in itself. A syndrome is just a collection of common symptoms for the convenience of doctors. It does not necessarily imply a common cause and as you know--the causes of fibromyalgia, in spite of much speculation, are unknown. I tend to agree with my doctor who believes that FMS is just a convenient label used when the cause is unknown. Before anyone misinterprets what I am saying, let me underline that this is not the same as saying that it's all in your head; the pain is real, the symptoms are real, but there will be no cure until the underlying cause is determined. Relief of suffering through the use of muscle relaxants and other pharmaceuticals does not address the root cause. Lyme is a spirochetal disease that can affect your entire body (another spirochetal disease is syphilis) with devastating effects. My neurological symptoms are really scary and an embarrassment at work. I couldn't remember my mother's maiden name yesterday and have since written it down. Lyme can affect your heart, necessitating a pacemaker. If you're curious to see the Lyme checklist, please go to: http://cassia.jerseycape.net/Checklist.htm Then read an essay written by a doctor who himself had Lyme: http://cassia.jerseycape.net/Essay.htm Even if you don't have Lyme, don't assume that a diagnosis of FMS is the end of the road. Always be on the lookout for the cause and don't attribute ALL your symptoms to fibromyalgia. You could have more than just one medical problem at the same time. Assuming that all your symptoms are due to FMS could keep you from receiving treatment for something that IS curable. Regards to all, Lana To reply, remove SPAM FREE from E Mail address. FMS Diagnosis & Complacency (A Cautionary Tale) http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=2f04ad5d044ffa1f,12&seekm=6hvr6u%24i6m%40news.dx.net#p ----- Subject: Re: Lyme/Fibromyalgia Date: 08 Oct 1997 00:00:00 GMT From: bdcz@aol.com (BDCZ) Organization: AOL http://www.aol.com Newsgroups: sci.med.diseases.lyme Hi, Having been diagnosed with fibromyalgia by my MD I empathize with you and your daughter. I do not have fibromyalgia and never did but, rather, have ongoing Lyme infection. Alot of MDs are not prepared to believe this or, worse, are ignorant. Find a Lyme MD as soon as you can. [Doug Bunnell - Wilton Connecticut Support Group] Re: Lyme/Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3d0cf6430666a189,0&seekm=19971008125900.IAA13992%40ladder02.news.aol.com#p The above message was a reply to: Subject: Lyme/Fibromyalgia Date: 04 Oct 1997 00:00:00 GMT From: dick4sails@aol.com (Dick4sails) Newsgroups: sci.med.diseases.lyme My daughter was at a camp near Port Jervis this summer, became ill with "flu". She still aches all over - diagnosed as fibromyalgia. Her docor said Lyme Disease tests are too inaccurate to have one. Any similiar cases or advice? Guest Lyme/Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=3d0cf6430666a189,0&seekm=19971004052500.BAA25998%40ladder02.news.aol.com#p ----- Subject: Re: MED: Lyme Disease Date: 18 Aug 1997 00:00:00 GMT From: Chris Ruggiero Newsgroups: alt.med.fibromyalgia Dear Lorenzo, I apologize for this being so long. While I am responding to the author personally, I thought I should also post this response to the list for anyone else's benefit with questions on Lyme disease. I have SO much to say on this subject, but I will try my best to be brief!!! Here's my story......about 5 years ago I became ill. It hit me like a ton of bricks. My symptoms included, but were not limited to the following: ---rapid heartbeat & shortness of breath, waking me up at times ---complete lethargy....slept around the clock for over 3 weeks straight ---did not eat/constant bouts of diarrhea, nausea, vomiting ---would awaken with intense dizziness ---joint and muscle pain ---headaches ---difficulty sleeping ---numbness and tingling sensations ---confusion/lack of concentration ---stiff neck/jaw pain & stiffness ---ringing in ears, leading to an off-balance feeling and intense dizziness ---sore throat ---speech difficulty ---panic attacks ---twitching of muscles and bad muscle spasms ---weakness of limbs ---sensitive to light (eyes, not skin) I was treated for Lyme disease about 3 months after all this started (no other doctor could diagnose me....my tests were negative....until I found a Lyme literate doctor). After about a year of treatment with oral antibiotics, I improved. Then other things started to bother me.....similar to the Lyme, but somehow different. My doctor then diagnosed me with Fibromyalgia. It is not uncommon for people with Lyme disease to develop it,esp. if they have a predisposition to it. The reason we develop FMS is because of the Lyme, esp. the disruption in normal sleep patterns that it can cause, aside from the trauma of the disease itself. I went to a rheumatologist after my Lyme doc diagnosed me, just to be sure. What is it with rheumatologists????? He also told me that I probably never had Lyme!!!! I gave him my written history, which included my list above and how it just HIT ME out of the blue. He still felt it was probably always FMS. And he didn't think MPS could be a chronic, body-wide problem. Well, I eventually fired him! He did nothing for me. Gave me meds that gave me bad side effects and wouldn't offer me any other help. I went back to my Lyme doc (who is an osteopath and family physician, not just a Lyme doc). His wife has FMS, so he is familiar with it. He treated me, I felt somewhat better for a while, then it hit me again in January of this year. Testing is terrible, as you know. Did you have a titer and a Western Blot done? Did you test positive more than once? False negatives ARE far more common than false positives. I tested negative for the past 4 years. This year I finally tested POSITIVE, several times on my IgM of my Western Blot. When these symptoms returned this year, I became completely convinced that the rheumatologist knew NOTHING about Lyme disease, and I also became convinced that it was Lyme disease that hit me nearly 5 years ago. Now that I am positive, have had IV antibiotics, I can tell the difference between FMS and Lyme. They are similar, but they are not the same. The way I feel now is how I felt 5 years ago.....and it's definitely Lyme disease! The FMS is secondary to the Lyme. I know I have that and MPS, too, but no one will tell me that I DO NOT have Lyme! I hope this helps you. If you have any questions or just want to talk, feel free to e-mail me. Good luck to you! Hugs, Chris :-) Re: MED: Lyme Disease http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=7d2f358ca9bfb99c,3&seekm=970818102955_282030846%40emout05.mail.aol.com#p ----- Subject: Does you child have Lyme...maybe! Date: 01 Aug 1997 00:00:00 GMT From: alerts@aol.com (ALERTS) Newsgroups: sci.med.diseases.lyme Having had LD for what could be 7 years (originally diagnosed as chronic fatigue and fibromyalgia) and dealing with chronic and sometimes frightening symptoms for the last year, I have become quite sensitive to other peoples' physical complaints. I once mentioned to a LLD that I guessed I was "Lyme paranoid." "No your not", he said "You have it." But I guess that this paranoia has served me well in terms of my children and I wanted to pass on my experience . Two of my kids, a 14 yr. old girl and a 7 yr. old boy have had varying physical complaints over the last 6-9 mos. or so, although both very different. My daughter has had occassional headaches, a couple of bouts of low grade fevers, a painful knee that would appear for 3-4 days, then a month latter it would be wrist (she does play sports but this would not be following a game), a few sinus infections or ear infections (never got them much as a child). She had always been a bit of a complainer when it came to her health and I attributed the pain stuff to gym and the others to kid virus'. My son had complained of stomach pain, with and without diarrhea that would be, again, on for 2-4 days then off for a week or even a few. Very occassionally he would have a headache or be tired but was usually energetic and lively as was my daughter. I will add that he did have Bells Palsey about a year and a half ago and was treated for 6 weeks with amoxicillin and it disappeared. This spring I had spoken to a mother who's child had had very mild complaints, which she attributed to adolescence, and had suddenly come down with seizures and had to placed in a wheelchair. It was Lyme. After some careful thought I decided to bring my two to a Lyme Literate Pediatrician and.....they both tested positive! In fact, this was just 3 weeks after my daughter's own doctor had done an Elisa locally which was negative. Now both kids are on Ceftin and seem to be doing fine..In fact, I just had my third child, an asymptomatic 11 yr old, was just tested and both his WB and Elisa were equivocal so he's being evaluated for treatment. My main point is that if I hadn't been so sensitive to this illness, it would probably have never occured to me to seek out a specialist to rule it out. LD could have sat in my childrens' systems, quietly multiplying and gathering force, while preparing to wreak havoc on their lives at some latter date. If you have any suspicions at all, that your children, or anyone elses, could possibly be harboring this horrid disease, please speak out, if only for the peace of mind of hearing the word "negative". Take care, Carol Does you child have Lyme...maybe! http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=f7b920bc29ef5009,5&seekm=19970801184000.OAA28797%40ladder02.news.aol.com#p ----- Subject: Re: MS and Fibromyalgia Date: 14 Oct 1997 00:00:00 GMT From: John Haynes Newsgroups: alt.support.mult-sclerosis [Kathy Cavert Kansas City, MO - deceased] My Lyme was once diagnosed with lupus, fibromyalgia, MS, etc. and guess what. IV Rocephin for 16 weeks completely brought my brain, body, pain, memory, confusion, dizziness, headache, backache, paresthesias, weakness, stiffness and so on back to feeling normal again. It was a bacteria afterall, causing all the hubbub. Re: MS and Fibromyalgia http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=28c349a08a6ea7c7,21&seekm=34430E89.4BB2%40sprintmail.com#p ----- Subject: New Dx and a Request for Info Date: 21 Mar 1997 00:00:00 GMT From: Trish Newsgroups: alt.med.fibromyalgia Hi All: I have been recently received a diagnosis of Fibromyalgia and Lyme Disease. Currently, I take Paxil, Klonopin, Elavil, prescription- strength ibuprofen called Daypro, Doxycycline and FiberCon. The doctors are also going to do a chest x-ray for a condition they expect to be something called Sarcoid. (Anyone ever heard of this?). It took about a year and a half to get thisdiagnosis - I went to Dr to Dr and I was told I was either neurotic or had a low-grade unidentified viral or bacterial infection. My blood tests showed only an increase in the sedimentation rate (20 is normal for a women - mine was 44). It was extremely frustrating since I KNEW something was wrong. What is the matter with Dr's? Why are they so damned arrogant!? And so dismissive of their patients concerns/feelings? (Thanks for letting me vent!) Finally, after four months of chronic, disabiling diarrhea I went to yet another Dr who was not arrogant and more willing to listen to me. He sent me to a GI and a rhematologist(sp?). The GI said I had Irritable Bowel Syndrome. The rhematologist said I have FMS after doing the trigger point test on me, later my blood test showed the Lyme disease. This was the FOURTH Lyme Disease test I had taking and this one was positive. I have every syndrome associated with FMS: pain, sleep disorder, IBS, TMJ, chronic headaches, and PMS. I feel like I'm a football player who has been tackle from three different directions by three huge, ugly guys! The worst part is that these Dr's had ME convinced that I was neurotic - I was being treated for depression prior to all these phsyical problems started. Then again maybe the depression was caused by the physical problems - who knows? But I look back over the past year and a half and realize most of the time I was dealing with an overload of guilt and self-disgust when I could not go to work or doing the all the activities family and friends expected of me because I was feeling so ill. And I was blaming myself for my lack of fortitude, stamina, drive, etc. Anyway, I not writing this to elicit pity or sympathy. I just wanted to tell my story. The purpose for writing is for help in obtaining information and/or opinions about organizations, groups, chat rooms that I can join or learn more from. I heard about the Fibromyalgia Network Newsletter and the have bought the book by Miryam E. Williamson _Fibromyalgia: A comprehensive approach_. What chat channel is available? And does anyone know of a support group in the New York City Area? Any info about Lyme disease? I have found alot on the Internet but I would appreciate any suggestions. Most importantly, any info on going on disability from work. Experience with employers and social security. Any problems with self-image? I'm worried that I will feel useless, become more depressed, because I will be purposeless.... I'm a computer consultant and I'm worried that even a brief short-term disability will have a bad effect on my career. Again, thanks listening to my story... Trish New Dx and a Request for Info http://groups.google.com/groups?hl=en&lr=lang_en&safe=off&ic=1&th=e919ee868cd40516,1&seekm=33321CCE.52CA%40columbia.edu#p --------------- See: Lyme disease Misdiagnosed as Fibromyalgia - Index http://www.geocities.com/HotSprings/Oasis/6455/fms-index.html --------------- Prepared by Art Doherty Lompoc, California doherty@utech.net