SparkPeople Patients of Lyme Disease Team Messageboard http://www.sparkpeople.com/myspark/groups_individual.asp?gid=21977 A team for members with Lyme Disease SparkPeople Patients of Lyme Disease Team Messageboard http://www.sparkpeople.com/assets/nav/nav_logo_v3.gif http://www.sparkpeople.com/myspark/groups_individual.asp?gid=21977 just checking in - from Kelly :) http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x71228055 Good afternoon Spark Friends! <BR> <BR> I wanted to take a minute to reach out to each of the clubs I’m a moderator for. I joined SparkPeople a few months back and was actively taking the challenges and making friends and accomplishing my weight loss goals. Then a few things started to change in my life. I had to deal with a family crisis, some health complications of my own, and an 8-yr old child who is suffering from yet-to-be-diagnosed health issues. I don't have healthy coping skills, so... Sun, 24 Mar 2019 16:02:19 EST Still Doing Well...Yea! http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x48248781 In the last discussion, I mentioned how well I was doing following complete knee surgery, being taken off all meds (except nutritional supplements), and being put on maintenance level lyme medications (isn't that where we ultimately want to end up?) I thought that since I was doing so well and was had much of my old self back that I did not want to lose any of that by going back on the heavy drugs. Since the ultimate goal is maintenance, I told the Dr that was where I wanted to start. So f... Sun, 27 May 2012 11:07:37 EST My blog today http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x48187997 I wrote a blog about a Lyme Conversation that I had with my mother. Tue, 22 May 2012 20:01:11 EST CD57 http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x48011390 Does anyone understand the CD57 results. I got mine back and at 22. Though I should understand these numbers, I find it confusing. Thu, 10 May 2012 19:39:37 EST Hello http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x47937371 Hello All. <BR> <BR> My journey through lyme with a Lyme literate MD began approx 1 1/2 years ago, although it probably all began as a teenger.. I was in bad shape with myoclonic movements, joint pains, extreme swelling in the legs and feet, and pain from carpal tunnel and mycofacial back pain, none of which could be disagnosed appropriately. I even went to NIH!. <BR> <BR> It appears I have chronic lyme. Based upon my symptoms, I ended up retiring as a preschool teacher, although timel... Sun, 6 May 2012 11:03:48 EST HELP- More Scary Medical Procedures http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x47476858 was so exhausted after my 4 hour visit and 45 min of driving each way other day that I could not even write an e mail last night. <BR> <BR> I have Chronic Lyme Disease and have been thru so much and now this. <BR> I am SO UPSET. 5 months ago when I coughed up blood TWICE and they did a CT chest scan and found a nodule the Pulmonologist that I saw did not test or look any further or do a Bronchioscope to see WHY I coughed up blood. MORE INCOMPETENT DOCTORS GRRR!!! <BR> They could have checked... Sun, 8 Apr 2012 00:01:46 EST New Treatment http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x47374559 Started seeing a new LLMD this week and started on a host of new medications. Been a rough couple of days on my stomach and lots of nausea. FInding hard to get out and exercise. I am hoping to get back into it tomorrow. <BR> <BR> See my blog "New Lyme Treatment" and it really tells you my protocol which I am sure many of you are very familiar with! Sun, 1 Apr 2012 18:08:14 EST How is everyone doing? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x45277220 Sorry for the absence. If anyone would like to be a co-leader please e mail me. <BR> <BR> I have been thru 7 biopsies and 3 surgeries this year so it has been rough plus still battling chronic lyme. <BR> <BR> 1 week ago I had thyroid surgery which Thank God was benign. <BR> <BR> How are all of you. Update me and others. <BR> <BR> Hugs <BR> <BR> Nancy Mon, 28 Nov 2011 18:19:15 EST Still Positive http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x44238930 Well, after 2 years. I beleive I am still positive for Lyme <em>46</em> I tested reactive to IgG and IgM bands 23 and 41. This just doesn't seem fair!! <BR> <BR> Jenn Fri, 23 Sep 2011 17:39:21 EST Need more prayers/ support- Thanks http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x44013128 Lyme and the co-infections are bad enough with debilitating fatigue, pain, etc. But. Since bladder biopsies Wednesday early morning (they put me under general anesthetic and when I had horrible pain when I woke up they had to give me 4 infusions of something 20 times stronger than morphine-plus oral antibiotic to take a couple days which I did not react well too. <BR> I have been having a rough time. I haven't sleep well in 3 night- in spite of taking Vicodin- which I hate because it makes me... Sat, 10 Sep 2011 17:57:46 EST long time with post-Lyme http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x43973408 Hello to all of you. I contracted Lyme before it was an official disease and have had confirmed infections many times over the years. Fortunately, I have been to see some very excellent doctors who not only tested and treated me but educated me about this disease and how to live with it. All I can say is take care of yourself through education. I have pain and restricted mobility and have to deal with this every day. It's no fun. I exercise in the pool and in the gym. It does not make ... Thu, 8 Sep 2011 10:19:17 EST URGENT- HELP http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x43842823 I am not feeling well.I am still battling virus- sores in my throat. <BR> I have been having a lot of bloating, gut and pelvic pain, back pain, pink discharge sometimes, etc..for 1 month or longer and bladder issues. <BR> <BR> I was having an anxiety attack over all these tests and all this medical stuff today. OMG I feel like I cannot handle anymore. Lyme is bad enough to handle. <BR> <BR> I went in to Lyme doc for alternative assessment and treatment and they said I had a allot of inflamm... Thu, 1 Sep 2011 00:22:24 EST Urgent Prayers/Support needed http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x43720482 OMG I felt awful today.This is the 8 th. day all this abdominal and urinary stuff has been going on. I almost drove myself to the hospital. My urine sample at the doc yesterday was normal but I am still having extreme bloating, abdominal and pelvic pain, had headache and neck pain and my usual mild chest pain that comes and goes and jaw pain that comes and goes. Then tonight when I urinated and wiped there was a tiny bit of blood on the tissue. I see the urologist on Friday but I am going to ... Thu, 25 Aug 2011 00:38:23 EST Is Anyone there??? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x43213612 Sorry I have been missing in action. I had 2 breast biopsies done - thank goodness benign but had to wait for 5 weeks and go thru quite an ordeal. <BR> <BR> Seeing my lyme doc tomorrow and feelling worse so I don't know what will happen next with treatment. <BR> <BR> How is everyone?? <BR> Nancy Tue, 26 Jul 2011 23:52:53 EST UPDATES & INFO http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x42423019 An email request I received.... <BR> <BR> <BR> Dear all, <BR> Channel Thirteen is not scheduling Under Our Skin. I believe it is one of the largest PBS stations in NY and if Under Our Skin were to show on their station, it could benefit thousands of people. <BR> <BR> I wrote a letter. You may see it below and I was hoping that as volunteers and support group leaders, you also could write. <BR> <BR> I submitted it online where you can go to contact them and I also sent this letter via ... Tue, 14 Jun 2011 12:39:15 EST 4 1/2 months into treatment, ~2 yrs into Lyme http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x42408690 Hello! <BR> I was glad to see this team on here - other Lyme patients fighting the disease with more than pills! <BR> I've had Lyme for almost two years now; we're not sure exactly when I got it, because we never found the tick or a rash, but it's definitely been since summer '09. I was finally diagnosed in January, and have been on various antibiotics (and plenty of probiotics) since. My dad and my dog have it, too. =( <BR> Last schoolyear was a nightmare - being a full-time college ... Mon, 13 Jun 2011 19:38:36 EST New Lyme info.- Must Read http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x42302029 http://ticktalkireland.wordpress.com/2011/<BR>06/01/dispelling-the-myths/ Go to this site. tom Grier is highly regarded. He is a Microbiologist who studies Lyme and co-infections. He has written many articles, including this one. <BR> <BR> Let me know what you think. <BR> Nancy Tue, 7 Jun 2011 23:54:24 EST Can you get better with just antibiotics? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x42084505 The reason I ask this is because I know of people who have been on i.v. antibiotics and it helped with some things but not everything and they were on orals also. Some have had all their symptoms come back. <BR> <BR> Then I have heard of people getting better from just using herbals and supplements. <BR> <BR> I am not sure what to believe anymore! <BR> Nancy Sat, 28 May 2011 00:36:15 EST Resources to check out http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x42067044 A couple books I would recommend are "The Lyme Disease Solution" by Kenneth Singleton M.D. and "Insights into Lyme Disease Treatment" by Connie Strasheim and any books by Dr. James Schaller M.D and Dr. Dietrich Klinghardt M.D. <BR> <BR> Some good web sits and on line groups are www.LymeFriends.com and timeforLyme.com and Lymediseaseassociation.org. I will try to post more info under Resources for everyone. <BR> <BR> Nancy Fri, 27 May 2011 00:11:57 EST Treatments, what has helped- not helped http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41950615 I know we are all different and have differnet co-infections but I would like us to share anything that has helped and not helped. <BR> <BR> I have been on so many treatments it is hard for me to sort out. I know that detoxing helped somewhat with weight issues and causing me to eat healthier when I first did it. I am now on a Calcium Bentonite Clay- internal detox and am taking it slow because it can cuase me to fell awful- which I suppose is good in a way. <BR> <BR> In the past I was on S... Sat, 21 May 2011 00:28:46 EST Update from Nancy http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41911728 My lump turned out to be a sebaceous cyst- benign- Thank God.I didn't feel well today- abdominal pain, gassy, headache and neck achiness and very very tired <BR> <BR> Thanks for the prayers and well wishes. <BR> Nancy Wed, 18 May 2011 23:52:15 EST Just joined your team, I am number 67. Hi http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x41878640 Hi Team, <BR> I have been over on Sparks CFS/FMS team for a while and thought I would try this one too. I will try to give you the Readers Digest abridged version as opposed to the long introduction. <BR> LD with bulls eye 8 years ago. Short course of antibiotics, no symptoms for 4 years. Came down with mono 4 years ago and that was enough to push me over the cliff and haven't been well since. <BR> The ton of doctors, both allopathic and naturopathic, have tripped over themselves to give me... Tue, 17 May 2011 12:40:54 EST LUMP- Need Prayers http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41862855 OMG I found a hard, painful pea size lump in my arm pit yesterday. It is still there , but not as painful. It is not like an infected hair which I have had before. Having ANXIETY- Have an appt. tomorrow at 1 p.m. with my gynecologist who is very pro-active. SO now I just need to calm myself down tonight and not worry. <BR> <BR> Keep me in your thoughts and prayers please. <BR> Nancy Mon, 16 May 2011 18:23:18 EST Lyme Diet http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41846726 Do any of you follow a particular diet- like anti-inflamatory, alkaline, glutein free, sugar free??? and has it helped with your symptoms?? <BR> <BR> <BR> When I was first diagnosed I went thru a month detox and followed a very strict diet. Then slowly I went back to allot of my old, bad habits with eating sugar and drinking coffee. I know I need to get back on track. <BR> <BR> Nancy Mon, 16 May 2011 00:20:00 EST Emergency Rm. Visit- need support http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41589524 OMG- I spent 4 hours in the emergency room at the small Hartford Aurora Hospital tonight. <BR> <BR> After drinking a smoothie for lunch and taking my supplements and the meds from Dr. Saxe- my Naturopathic Lyme doc-I had super severe abdominal pain- just under my belly button, felt nauseated and faint- it got a bit better but then hurt again more towards the left side of my belly button area. This has happened 3 times in the last 3 weeks since I started taking the new Lyme meds. I went to ... Tue, 3 May 2011 00:04:16 EST Recommendations from ILADS http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x41275385 I found this interesting article full of recommendations by the ILADS found at ILADS.com <BR> <BR> <link>www.ilads.org/lyme_disease/B_guideli<BR>nes_12_17_08.pdf </link> <BR> <BR> I found a recommendation that I had read elsewhere, that during treatment, Lyme patients are NOT to do Cardio. (Exercise info starts on p. 37) <BR> <BR> All of my strength workouts include cardio, so I am in the process of finding new ones. Sun, 17 Apr 2011 12:15:31 EST New here http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41265702 Hi! I'm new to this website--joined just today. :) <BR> <BR> I am feeling better now but had a long journey with Lyme Disease. <BR> <BR> I started a blog the other day and have written some of my story (I was misdiagnosed for 10 years, treated for 4 years, so there's lots still to write about). <BR> <BR> <link>lifeafterlyme.wordpress.com/ </link> <BR> <BR> I have to get back eating healthfully though, and focus on supporting my immune system. So here I am! I feel fortunate to have fo... Sat, 16 Apr 2011 20:58:25 EST New Members http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41181773 Hi, I am Nancy and want to welcome you to our group. I have been battling Lyme disease for 8 years. Please introduce yourself and tell us more about you. <BR> <BR> Post any questions or concerns that you have. We want to support you. <BR> <BR> Tue, 12 Apr 2011 17:20:08 EST Lyme treatments you found helpful/not helpful? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41085903 I am not sure I have a good response to this question because I have been on Doxycycline, Cefuroxime, many herbal and homeopathic treatments and am still not better. I will be ging to see a new Lyme doc soon so I am hopeful. <BR> <BR> Hugs <BR> nancy Thu, 7 Apr 2011 23:55:09 EST Leader of Lyme group http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x41062649 Hi: <BR> <BR> I don't know if there is a leader of this group anymore but if not I would like to become the new leader or co- leader if someone would like to join me <BR> <BR> My name is Nancy and I live in Wisconsin. I was originally diagnosed with fibromyalgia but believe it was Lyme all along. I have seen 2 Lyme doc's so far in the last 2 years but am not better yet. I am going to a new doc in 2 weeks. <BR> <BR> Let me know what you would like from this group?? <BR> Blessings <BR> Nancy Thu, 7 Apr 2011 00:07:35 EST Exercise http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x40968278 I have recently read a lot of Lyme info about exercise. Some of it came as a surprise to me. All seem to agree that we should NOT exercise two days in a row and should not push ourselves too hard. There seems to be some disagreement about the type of exercise. Some say we should NOT DO CARDIO (WHAT?!?!), but only do strength training and stretching and things like yoga. Others say we should do cardio, just not push too hard. <BR> <BR> I have been participating in a challenge team here... Sat, 2 Apr 2011 22:29:08 EST Is anyone else exhausted? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x40469816 4/6 members of my immediate family have been diagnosed with lyme disease in the last eight years. As the most recently diagnosed, I feel like I'm the last one who gets to complain because, in their eyes, I haven't been suffering long enough. I made it out of Loudoun County without contracting LD, went home for a week after graduating college, and came back to Newport News with rocky mountain spotted fever and LD. I'm going on year two, I've done the antibiotic roller coaster, the strict lyme ... Thu, 10 Mar 2011 12:15:41 EST My Fight for Health http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x40186516 Hi Team! I wrote a blog about my journey to my Lyme diagnosis. If you are interested, here is a link: <BR> <link>www.sparkpeople.com/mypage_public_jo<BR>urnal_individual.asp?blog_id=4043416 </link> <BR> <BR> Hope all of you are doing well with your treatment and recovery! <em>247</em> to all! Sat, 26 Feb 2011 13:46:52 EST just diagnosed http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x40130001 Hi, <BR> I just received the call today. I had been complaining of arthritic/carpal type pains in my hands and neck and shoulder pain for at least a year. I was treated like I was crazy, was all in my head because numerous tests came up false. I had so many different symptoms and since I had been going through a stressful event, no one could place my issue. I went to the doctor again last week and complained once again. She order blood tests again, and at the end on a last impulse she sai... Wed, 23 Feb 2011 21:18:41 EST Sleep has become a major issue http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x39812934 I started treatment for Lyme in December 2010. Gradually, my sleep problems have worsened until now I can't sleep AT ALL unless I take ambien. (Which usually doesn't work well if I take it several days in a row.) I already take several meds and supplements to help me fall asleep and they used to work, even though I would wake up after just a few hours. (Not getting any sleep at all makes me hurt so much!) How can someone so tired not be able to fall asleep? <BR> <BR> One of the meds I a... Wed, 9 Feb 2011 20:12:11 EST Also Just diagnosed http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x39030790 Hi, I was away on vacation at DisneyWorld and received the call that said I have lyme disease. We got on the computer that night and was amazed at how little information and so many places for so little information there is.I have been a bit fatigued, but thought it might be menopause or chronic fatigue-a diagnose I have had before. <BR> I am taking meds and will talk to doctor next week. <BR> I am a runner and would like to use food and exercise as a way to help. <BR> Blessings all Mon, 10 Jan 2011 05:02:16 EST Muscadine Medicine http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x39021812 Hi Team! It is 2011 - a new year and hopefully a new start. I had a really bad year in 2010 and need to make some improvements. <BR> <BR> I ran into someone who had been in a wheelchair since she was 29. She is 62 now and has been walking for 2 years. <BR> <BR> We were talking and I found out her secret. It is muscadine medicine. She told me that there are over 120 natural antioxidant and anti-inflammatory combinations in the muscadine grape seed. There are several hundred grape see... Sun, 9 Jan 2011 19:25:01 EST New here, finally free of Lyme! http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x38559144 Hi! I was bitten and diagnosed with Lyme when I was ten years old, in 1992, after going to summer camp at the Bronx Zoo in NY, where several people got sick with Lyme that summer. After a short bout of the wrong antibiotics (so as to not stain my teeth!), it was forgotten, but I spent the next eleven years really sick with no answers, and few believers. It wasn't until I was twenty-one, in 2003, that I was re-diagnosed! I'd had Lyme for eleven years. It took a few months of IV a/b but I ... Sun, 19 Dec 2010 16:18:13 EST Just Diagnosed! http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x38233238 Hi, I am a 47 year old mother of 3 who was just diagnosed with Lyme Disease today. I have suffered from symptoms for the last 25-30 years and have been tested for Lyme before (always negative) and diagnosed with Fibromyalgia and Chronic Fatigue. This fall I took the Igenx test and got the results today. I have TEN different strains of Lyme Disease and am now starting a Lyme protocol which involves rotating 3 different antibiotics as well as taking a lot of different supplements (such as Ar... Wed, 1 Dec 2010 19:12:07 EST One Day at a Time http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x36683271 Like many of you, I'm taking this one day at a time. It has been over two years since I was diagnosed with Lyme Disease and Babeosis. <BR> <BR> The hardest part of my illness is the fact that I can not keep up with my son and do all of the things I would like to do with him. <BR> <BR> I am in pain most days and on a good day, it doesn't take long before the pain returns because I am up trying to do things. <BR> <BR> The list of symptoms grows longer and my medications are still increasi... Tue, 14 Sep 2010 10:42:43 EST New To Community http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x36003897 Hi, all! <BR> <BR> I see there hasn't been a lot of activity here, but I'm hopeful to connect with some of y'all anyway. I'm struggling with many symptoms and my chiropractor "diagnosed" me with Lyme disease after extensive counseling and muscle testing. I have not had the Igenix test yet, but my new LLMD is doing full spectrum blood work at the end of this month. I've never been so hopeful to have a disease in my life, but if it ends up there on paper, then I have an answer! <BR> <BR> I... Thu, 12 Aug 2010 10:35:48 EST Hi I'm new here http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x35146798 Hi I'm so glad I found this sparkteam! I was diagnosed with Lyme's 2 summers ago and after the normal 3 week antibiotic treatment I started getting all of the symptoms back, but put it on the back burner since school was starting for my 4 children, a child's birthday in Sept., a child's birthday in Oct., Halloween, Thanksgiving and Christmas...I procrastinated until last summer, then was told I never had Lymes, that it was osteoarthritis. Switched doctors and brought proof (picture of bull'... Thu, 1 Jul 2010 14:39:43 EST Detoxing - stay on top of herxing & symptoms http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x34937158 so, I'm starting this thread after a conversation that was going on about detoxing and symptoms. . . .as a lymes patient I feel like you always ask yourself, "WHEN AM I GOING TO FEEL BETTER"!!!! I've found that after doing antibiotic protocol, natural supplements always made me feel the best. I've combated my lymes and I've been left with 50lbs of excess weight (which is why most of us join spark in the first place). <BR> <BR> I've lost around 15 lbs of my excess weight recently and have... Mon, 21 Jun 2010 12:19:58 EST Hi! (from Canada) http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x34791304 Hi! <BR> <BR> So I'm Nicole, from Canada. I only had Lyme disease for 2 years before I was diagnosed, but by the time I caught it, I had fairly severe cognitive issues. I'd heard both MS and ALS mentioned by doctors (eek!), although most of them stuck to the "that doesn't make sense for someone your age- you must be crazy" line. <BR> <BR> Anyway, I have been treating my Lyme disease for just over 5 months now, and have seen lots of improvement. It is kind of scary to actually start to have ... Mon, 14 Jun 2010 11:27:37 EST HI I'm Jen from NJ! http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x33957489 Hi everyone! <BR> I'm new to Spark People. I am 27 and happily married and we have a sweet greyhound. I contracted Lyme 11 years ago but didn't know it, after deteriorating to the point I couldn't get out of bed and my parents were sure they were going to lose me. I finally began treatment with an amazing LLMD two years ago. I am doing better but still have a long way to go. My Dr emphasizes exercise and eating well so I am trying to get on track! Thu, 6 May 2010 13:54:06 EST HI I'm Cee and New to SparkPeople and this group http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x33880292 I was so glad to find a place where people may understand the ups and downs and day-to-day struggle with Lyme Disease. I was diagnosed almost a year ago and the closest we can figure is that I got Lyme Disease almost 25 years ago. Needless to say that my body has gone through a lot. At one point I was in a coma for 40 days and should have died about 10 times during that spell. <BR> <BR> I've got a lot to recover from and am doing well and getting better all the time. What I really don't ... Mon, 3 May 2010 14:08:37 EST "Well spouses" of Lyme patients http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x33851220 My partner and I have been together for 21 years. Nine years ago her body just started to shut down without warning. She went into a long coma and had an even longer recovery as her body overcame much of what had happened. Four years ago it happened again. I almost lost her a second time. In both cases, the doctors (and there were plenty of them) couldn't explain why she got sick or why she got better. We had this threat of death hanging over us until about a year ago when we found a fabulo... Sun, 2 May 2010 11:08:17 EST Low White Blood Cell Count http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x32969926 Hi: <BR> <BR> Have any of you had a low white blood cell count??/ Is that typical with Lyme??. Mine has been low several times and I tend to catch colds, viruses easily. <BR> Nancy Thu, 25 Mar 2010 21:31:40 EST A very thourough article http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x32677327 It's not a recent article but I didn't see it already posted so I thought I'd share. <BR> <BR> http://autoimmunityresearch.org/lyme-dis<BR>ease/ Sun, 14 Mar 2010 05:14:18 EST Lyme doctors under fire http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x32437752 This is so frustrating. <BR> Does this make sense to anyone? <BR> <BR> http://underourskin.com/blog/?p=715 Thu, 4 Mar 2010 14:35:09 EST Congrats Heather O!!!!! http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x32130372 For making the #1 spot on the fitness leader board!!!!! <BR> My numbers are not accurate. You earned yours!!! <BR> <BR> <em>345</em> <em>244</em> <em>243</em> Sun, 21 Feb 2010 16:53:41 EST Please ignore my placement on the fitness leader b http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x32130298 My numbers are skewed because I am using the fitness tracker to gauge how much I do every day in general so that I can find where my comfortable activity level is. <BR> If I find the line I will know how to gently nudge it forward instead of leaping over it and paying the price. <BR> <BR> I don't know how to make my numbers not show up on the board and I don't want to steal the thunder of those of you that work so hard to get those real fitness numbers. Soooooo..... please disregard my name ... Sun, 21 Feb 2010 16:51:10 EST Hello :) http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x32130161 My name is Katie. <BR> I'm 39 and from Texas. In 2004 I was hospitalized for severe pain and a major drop in blood pressure (partly from the pain meds they gave me)and I never really got better. Pain and fatigue now govern my life. I'm still learning to work with these as signals instead of fighting against them and making it worse. I've been diagnosed with Lyme Disease, CFIDS, FM, HHSV6, and Chronic EBV. Only one of my doctors acknowledges all of these and he doesn't take insurance. I am muc... Sun, 21 Feb 2010 16:45:14 EST Where is everyone from? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x31491936 Hi There I was just curious where you are all from? <BR> <BR> I live in Central PA Thu, 28 Jan 2010 13:52:14 EST New Member Here http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x31296879 Hello everyone, my name is Marissa, and I am a Lyme patient. Additionally, my husband is also a Lyme patient. We have been treating for approx. 6 months. I am glad that I started going through the SparkTeams and came across this group because it is difficult to find information and others who are also dealing with this disease to discuss treatments, symptoms, etc. with. <BR> <BR> I live in Pennsylvania, and look forward to meeting everyone (even if it is only talking through the message b... Thu, 21 Jan 2010 17:36:42 EST New Member Here http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x31273419 Hello everyone, my name is Marissa, and I am a Lyme patient. Additionally, my husband is also a Lyme patient. We have been treating for approx. 6 months. I am glad that I started going through the SparkTeams and came across this group because it is difficult to find information and others who are also dealing with this disease to discuss treatments, symptoms, etc. with. <BR> <BR> I live in Pennsylvania, and look forward to meeting everyone (even if it is only talking through the message b... Wed, 20 Jan 2010 22:00:04 EST The right place, the right time http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x30862102 I am so excited to have found you all at last. I hope I will be and encouragement to you all. I also hope you can help me get back my self asteem. I have been way out of control and thats why I am here. <BR> My goal is to regain control and learn how to face the challanges of everyday life without overeating. <BR> Thank you SP <BR> WhiteRain Thu, 7 Jan 2010 14:09:22 EST Start Week 3 of IV treatment http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x29781873 What a pain. I'm now on 4 months of IV antibiotics - 24/7 because of the side effects of the other antibiotic option which is only once a day. This is after 2 months on orals. Was back to the doc last week - said things were as good as could be expected. Plan is finish the 4 months and then do 12 months of oral antibiotics after that. At least I have a great LLMD - would be happy to refer if you need a name - send me a private e-mail. <BR> <BR> Just giving you all an update since I've b... Mon, 16 Nov 2009 16:00:20 EST HELP-Liver nezymes elevated again http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x29427987 I feel like I am going crazy. My Lyme doc put me on Doxycycline 1 month ago- 100 mg. 2 x's a day. I just found out my liver results on-line today and now I have a feeling- b/c this is what happened last time when my enzymes were elevated- that on Monday when I call his office they will discontinue antibiotics again. My bilirubin was low 0.1, my AST was high 68, and ALT was high also 78. I have been on doxy, phytoartemisinin 2 tabs 3 x's a day, and another herbal Lyme treatment called Spiro an... Sat, 31 Oct 2009 15:17:52 EST A Useless Intro for a Useless, Utter Failure http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x28322463 Hey... <BR> <BR> I'm new to your group. <BR> <BR> I actually doubt that my being a member here will help me to resolve any weight issues or give me ideas, support or encouragement in any way. <BR> <BR> I already know that I have resigned myself to never leaving my bed again unless it is to visit the doctor for some new and useless medication. <BR> <BR> I am, however, very much looking forward to reading about how everyone else suffers. I don't mean that in a nasty way. It sucks that anyo... Thu, 10 Sep 2009 20:26:55 EST Homeopathic Lyme treatments?? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x27978766 Has anyone tried any homeopathic Lyme treatments??? <BR> I am sooo frustrated. I was on triple antibiotic therapy for 1 month and my liver enzymes were elevated so the Lyme doc took me off all antibiotics. <BR> He has me taking allot of supplements, an herbal remedy for my liver and now 2 homeopathic remedies for Lyme. I don't see him again until the end of September. <BR> <BR> I don't know if I should change doctors or what but I am sooo frustrated. I've spent thousands of dollars and have... Wed, 26 Aug 2009 19:06:40 EST HELP-Doctor who doesn't believe in chronic Lyme http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x27978692 I quit work. I called on Monday and talked to the new Principal and she didn't know if my job would be approved yet, but she wanted me back. Then I told her about my health and she said that she had hear that I missed work often for health reasons and that she didn't want me to return if I couldn't have consistent attendance. I said I would call her back Tuesday, which I did and I told her that I could not return to work at this time. She will write a letter for me documenting that I am not a... Wed, 26 Aug 2009 19:02:55 EST we invite you to join us in a Walk in the Park http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x27404144 Please join us in a Walk in the Park .... <BR> <BR> To brighten your day : <BR> http://www.youtube.com/watch?v=iazaO6BAa<BR>W8 <BR> <BR> Wishing everyone a great day ! <BR> thank you for this lyme forum <BR> <BR> Sat, 1 Aug 2009 15:21:20 EST Here is a Cute Lyme Video http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x27185719 follow this link <BR> http://www.youtube.com/watch?v=YqoCoxo8_<BR>Hs <BR> <BR> or google You Tube....and once @ that site...search for <BR> Cammster101 <BR> ........enjoy.......... Wed, 22 Jul 2009 20:25:14 EST Here is the Link for Letter to the Editor http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26927734 http://lfpress.ca/cgi-bin/publish.cgi?p=29<BR>901&x=letters&l_publish_date=&s_publis<BR>h_date=&s_keywords=lyme%20disease&s_to<BR>pic=&s_letter_type=&s_topic=&s_letter_<BR>status=Active&s=letters <BR> <BR> <BR> <BR> or go to : <BR> http://lfpress.ca/newsstand/News/ <BR> then scroll down the side and click on opinion <BR> type the words : lyme disease in the keyword search box and press *go*....this will bring up my letter and the many who contributed comments there regarding lyme....I invi... Sat, 11 Jul 2009 15:01:05 EST My Letter to the Editor regarding lyme Disease http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26905907 Hi Lymie pals...havent been on sparks for awhile...been a rough month , Herxing maybe....lol <BR> <BR> I wrote a Letter to the Editor of a Local paper : Many lyme sufferers are responding...this is important to keep the disease out in the open as the government tries to pooh pooh lyme. <BR> <BR> Here is the link.... <BR> I invite anyone who would like to to please post a comment....thank you <BR> Cambridge Keenan <BR> Fri, 10 Jul 2009 12:30:58 EST Has anyone heard of http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26817789 Has anyone heard of someone getting back to normal, fighting off lyme disease without treatment? Just wondering if it is possible. Mon, 6 Jul 2009 21:24:05 EST CD57 test http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26750603 Have any of you had a CD57 test for Lyme.?? My result ws a 64 and that is part of the reason my doc thinks I have Lyme <BR> <BR> Nancy Fri, 3 Jul 2009 13:28:55 EST My test is negative but my doc is treating me http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26750592 Hi everyone: <BR> <BR> I had 2 Western blot tests and a test for Ehrilicioous. Both were negative, but one band on the Western blot was positive and 2 bands were inconclusive. I don't remember ever being bitten by a tick and I have not had a bulls eye rash. However, based on my symptoms and a CD 57 test that showed a result of 64 my doctor is treating me with triple antibiotic treatment. I just started today. <BR> <BR> I have not felt well for years- fatigue and pain that comes and goes, ... Fri, 3 Jul 2009 13:27:46 EST Disability and Lyme http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26441958 Have any of you been able to get disability for Lyme disease?? If so, do you have any helpful hints!! <BR> <BR> The doc. I am seeing does think I have Lyme even though my test is negative- except for 1 band that was positive and 2 that were inconclusive. I have never noticed a tick but I never checked. I have not had a bulls eye rash but I've had other rashes. I don't feel well allot- fatigue, pain, tingling, headaches, etc..It is miserable. <BR> <BR> I work 3 hours a day during the school ... Fri, 19 Jun 2009 18:28:06 EST Had inconclusive Lyme test- Do I still have Lyme?? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x26223597 Hi everyone: <BR> <BR> I had 2 Western blot tests done thru Igenix Lab, which is supposed to be a great lab. Both were negative, but one test had 1 band that had 2 positive markers and 2 bands that were indeterminate. My doc still thinks I have Lyme, but I am confused. I do have allot of the symptoms.- pain, fatigue, tingling, etc.. He is re-doing that same WEstern Blot test to see if it will turn up positive this time plus he is testing me for one of the co-infections. My other doc that I ... Wed, 10 Jun 2009 17:45:14 EST Share Your Story http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x25423955 Hi! <BR> <BR> Would anyone be willing to share their story on what symtpoms they have, treatments, when and how diagnosed, etc.. I believe we can all learn from each other. <BR> <BR> I just recently saw a new doc that specializes in Lyme Disease and other women's issues. I was diagnosed with Fibromyalgia by 2 different doctors, but this doctor believes I have Lyme Disease. I don't know the official test results yet. <BR> <BR> I haven't felt well in the last 6-7 years - fatigue, pain, nause... Sun, 10 May 2009 13:26:49 EST Hi!- I am new http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x25163298 Hi everyone! <BR> <BR> I have been ill for about 5-6 years and was diagnosed with fibromyalgia last year. I saw a doctor this last MOnday who specializes in Lyme Disease. He is certain that I have Lyme. I am having the Western Blot test done thru Igenix Lab in California and another blood test - CD57. I also have other health issues and am really struggling with not feeling well. <BR> <BR> I'm glad to be part of this team and look forward to talking with all of you. <BR> <BR> Nancy Thu, 30 Apr 2009 15:57:41 EST Exercising http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x25018051 Having battled Lyme Disease for twenty years, now, I've found that I get injured really easily when exercising. For anything aerobic, I've found that if a start small enough, and increase a tiny bit each day, I can usually avoid injury. I haven't found a way to do strength training without hurting myself, and I'd really like to increase my upper body strength. Does anybody have any suggestions? Sat, 25 Apr 2009 12:27:29 EST HOW TO REMOVE A TICK http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24874713 I found this the other day, I don't know if it works personnaly, because I haven't picked a tick off this year (Thank God!). But I thought I would pass the info on. <BR> <BR> HOW TO REMOVE A TICK <BR> <BR> Spring will be here soon and the ticks will soon be showing their heads. <BR> Here is a good way to get them off you, your children, or your pets. <BR> Give it a try. <BR> <BR> I had a pediatrician tell me what she believes is the best way to remove <BR> a tick. This is great, bec... Mon, 20 Apr 2009 16:56:51 EST Hello, I'm new to this team http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x24736626 Hello everyone, <BR> <BR> My Name is Tabitha, I live in CT. I've been a member of Sparkpeople for a couple years now. <BR> <BR> I was diagnosed...(if you could say that) with Lyme's disease a couple months ago. Some days I almost can't beleive it, it's so scarry. Doctors don't know anything about this disease, medical boards are turning their heads, why can't we get help? <BR> <BR> I've gained some weight, it's making me feel aweful about myself. I used to be in really good shape, ate ... Wed, 15 Apr 2009 11:38:13 EST Easter Sunday http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24676093 How did you spend Easter Sunday? Mon, 13 Apr 2009 13:29:23 EST When you were little... http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24525552 What was your favorite toy? Tue, 7 Apr 2009 18:23:26 EST a good lyme link http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x24458236 Here is a Canadian doctor who helps people online. He had to close his practice after being forced out by the Canadian College of Physicians and Surgeons for his agressive treatment of lyme disease.... <BR> <BR> http://www.drerniemurakami.com/forum/ Sun, 5 Apr 2009 18:17:18 EST Under Our Skin http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24369806 Have you watched this dvd? or previewed the trailer..it is Fabulous !...It is comin to theaters soon becuase it as won so many awards....what a Great Way to open the publics eyes on the truth about Lyme Disease..... <BR> www.underourskin.com <BR> <em>420</em> Thu, 2 Apr 2009 13:43:15 EST What did you want to be when you grew up? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24327160 When you were young, what did you want to be when you grew up? <BR> <BR> I wanted to be a wife and mother, only thing is...I should have wanted a better husband! LOL Wed, 1 Apr 2009 09:41:43 EST Have you huddled today? http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x24113758 I don't know about you, but when I go "huddle" I look to see if anyone is having a bad day, or if someone is new. <BR> <BR> Let's try Huddling with this team and get some action going. Wed, 25 Mar 2009 10:54:05 EST How were you diagnosed http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x23929684 How were you diagnosed and how long did it take for you to get the right diagnose? <BR> <BR> I'm still trying ways to get better. NO ONE here knows anything about Lyme. I've had to do all the research and get info to one of my drs (who would at least listen to me). <BR> <BR> I even went to Vanderbilt in Nashville and the Infectious Disease dr said I needed to see a Rheumatologist. My husband told her that all of my symptoms were Lyme and that I had been biten. She rudely told us that we we... Thu, 19 Mar 2009 00:30:23 EST Hi, I'm new http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x23920577 But not to Lyme Disease. This disease has effected every area of my life. I am now a little over a year of the diagnosis (which was more than 1 year late). I am feeling better now than I have since June '06 when "I got down and couldn't get up", and I didn't know why. <BR> <BR> I'm glad to have found you guys. I am a team leader for Christian Ladies w/Chronic Ilneeses and Pain and also Sufferers of Vertigo (which I got because of the Lyme). <BR> <BR> Anyway, glad to meet with all of you and... Wed, 18 Mar 2009 18:14:09 EST introducing me http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x23886621 Hello, <BR> I'm littlestsis and joined Sparks People in May of last year, mostly so I could read my real life sisters blog. This is the first team I have joined and hope to be helpful and supportive to my team mates. I don't vist Sparks people often, but since i just set a goal to visit here once a week that will be changing. <BR> <BR> I live in Southern Maryland which is an area that has been hard hit by Lyme's. I was finally diagnosed and started treatment for Lyme disease April 2008. ... Tue, 17 Mar 2009 16:15:50 EST Lyme Disease: A Growing Epidemic http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=9743x21977x22094741 I've posted an article on Helium in response to the question of whether Lyme is a growing epidemic in North America. You can read my article as well as others on Helium. <BR> <BR> <link>www.helium.com/items/1305880-lyme-di<BR>sease-is-becoming-an-epidemic-in-north<BR>-america </link> <em>282</em> Wed, 21 Jan 2009 02:24:34 EST Patients of Lyme Disease http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x22074820 Hi Everyone! I am, as well as my father and stepmother, a Lyme Disease Patient. I am a team leader for our team and would like to see more activity here. Please help spread the word of our team and also help meet the team goal of one visit per week to our team page. Thanks & have a great week! Tue, 20 Jan 2009 14:18:16 EST A Family of Lyme Disease Patients http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x21977x21982725 My father,step-mother and myself are all Lyme Disease patients. Though the Lyme is in remission, my step-mother is permanently disabled due to nerve damage. My father and I are currently dealing with babesiosis, a coinfection of Lyme. <BR> <BR> I just found the SP website yesterday & I am impressed with the tools and content. I will be logging in daily. <BR> <BR> I just found this team and joined. I will be posting more soon. <em>249</em> Sat, 17 Jan 2009 22:36:14 EST LYME'S DISEASE http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x21977x14981948 HELLO , IF ANY ONE HAS EXPERIENCED THE BAD AFTER EFFECTS OF LYME'S DISEASE, I HOPE YOU WILL JOIN AS SO MANY PEOPLE DON'T UNDERSTANT THE SERIOUSNESS OF IT. HOW IT CAN MINIC OTHER DISEASES. WE NEED HELP AND WOULD LOVE TO HAVE PEOPLE SHARE THEY EXPERERIENCES AND HOPFULLY WE MAY HELP EACH OTHER AND OTHERS. THE PIC IS MY ROTTIE MAX. HE ISN'T HOW I CONTACTED LYME'S. I HOPE WE GROW TO BE A GREAT TEAM. SO COME ON LETS GOO!! BLESSINGS LORAINA Fri, 16 May 2008 17:47:52 EST