Having Lyme disease is often a life-altering experience, like no other health problem you’ve ever had or could imagine ever having. If it’s not caught and treated early, Lyme produces a wide-range of debilitating symptoms. No two Lyme sufferers have exactly the same complaints. Lyme is tricky to diagnose. It’s harder to treat, especially because it usually comes with other infections that also need attention.
If all this weren’t enough, the medical community seems woefully unprepared to help people who have or suspect they have Lyme. Many doctors know little or nothing about Lyme, telling their patients not to worry or that it’s “all in their heads.” Some even say “there’s no Lyme around here” when in fact there is. In the US, patients get caught in the crossfire of sniping between two groups of doctors with competing views on what Lyme is, or isn’t, and how to treat it. And many insurance companies won’t pay for long-term Lyme treatment, leaving disabled people with little or no recourse for extended care.
There are very good reasons for Lyme patients to be scared and angry. Many are.
I’ve come to see, however, in my 6 years of Lyme treatment and probably over 30 years of having Lyme without knowing it, that fear and anger don’t help me heal. More important, fear and anger don’t help me accept that much of what happens in life is out of my control.
This all came to mind when I ran across a short essay in The New York Times titled Our Health and the Luck of the Draw. Written by Danielle Ofri, M.D., an internist at New York City’s Bellevue Hospital, it’s a wise antidote to the cynicism and frustration that often runs through our lives and conversations when our health is challenged, especially with Lyme.
Dr. Ofri observes:
We imagine medicine as a rational science, and we imagine our attention to our lives and our bodies pays off in reasonably predictable ways. But our health and well-being is much more bound to random chance than we’d like to think.
The rest of the essay is at http://well.blogs.nytimes.com/2011/05/12/when-health-is-the-luck-of-the-draw/
Whether you are exploring the possibility that you or someone you love has Lyme or are already diagnosed with Lyme and into treatment, the essay should give you pause.
Sometimes things don’t turn out how we want them to and the best we can do is accept them and go willingly where our circumstances lead us.
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25. August 2012 at 6:30 pm
I was recently told that I have chronic Lyme disease. I was tested and the test was positive. I have had fibromyalgia and RA for a number of years also neuropic pain in my legs. The odd thing is the doctor believes that I may have contracted Lyme while on Doxycycline for something else. I had been on the med. for a long time and I can’t remember the last time I was bitten by a tick, but it is so common in this part of the country to get ticks on you if you go outside if you live in the country, even in your own yard or patio. You can pick one up just getting the mail.
This Lyme is realy hitting me hard. I have had so much to take on before; this was just not what I needed. I already live in some kind of pain every day – now I have some more. I live in mid western Wisconsin by Eau Claire. Thank You.
26. August 2012 at 7:58 am
So sorry for your pain and problems, Aleza. I’m sending you WI Lyme info so you can find a Lyme specialist who knows how to diagnose Lyme correctly and treat it adequately if you have it. Lyme usually comes with other co-infections. You should be tested for them too. Thanks for asking.
25. May 2012 at 2:03 pm
I have had strange illnesses for a little over a year now..I finally had my doctor check me for lyme(no results back yet) and he said there is no lyme out here. I have been to the ER 3 times twice by ambulance, 15 different specialist, and they all say the same, everything looks normal. Anyway could you please give me in to find or suggest a LLMD near Palmdale, Ca.
Thanks
25. May 2012 at 4:00 pm
Ridiculous! There’s lots of Lyme in California, Jeff. I’m sending you info so you can find a doctor who knows how to diagnose it correctly and treat it adequately if you have it. So glad you asked. Thanks.
25. May 2012 at 4:07 pm
Thank you so much for your help. Hopefully within the next few days to a week I will know and I can get on with my life. Thank you
14. April 2012 at 4:57 pm
I wanted to know if I could re-post your article on “What’s luck got to do with it” on my family blog? I have posted a few times about lyme, especially since I’ve had it for 8 years, my husband has tested positive, and three out of my four children have tested positive.(Our fourth was adopted). I love posting things here and there in hopes to get more information out to anyone that may read my blog.
We have also just moved to Colorado-foothills west of Denver and would love any info on llmd’s if you have it.
Thanks!
17. April 2012 at 11:22 am
Cynthia, I’m sending you CO Lyme info shortly. Sorry that most of your family is affected by Lyme. Thanks for asking.
I’ll contact you about use of material from this website. I appreciate your asking permission. Many people just swipe it and repost it, often without attribution. While I’m glad Lyme info is getting out there, stealing it isn’t the way to do it.
11. April 2012 at 10:15 pm
Looking for info for the Des Moines IA area?
12. April 2012 at 8:11 pm
I’m sending IA Lyme info, Jill. Thanks for asking.
7. April 2012 at 12:05 pm
can you give me lyme spacialist in Pa near phila, hershey, lancaster, or in new york
7. April 2012 at 2:16 pm
PA Lyme info is on its way, Jerry. Thanks for asking.
21. February 2012 at 8:56 pm
I was just diagnosed with Lyme this Feb 14,2012 after 3 bands were present in the IGM Western Blot. I am on an antibiotic. Accdg. to my infectious doctor, I am on the 2nd stage of LYme and on Doxycycline 100 mg 2 x/day.I did a lot of research, and of course,reading all the blogs here which are very educational. I don’t want to have relapse. I want to see a Licensed Lyme Doc here in Maryland. I heard that Lyme Docs who follows Burrascano’s guidelines are very effective. Please advice me or recommend me a Licensed Lyme who accepts or not accepts insurance. Thanks.
22. February 2012 at 6:45 am
Maryland Lyme info is on the way, Dina. Thanks for asking.
4. December 2011 at 8:43 pm
Hi – i’ve had lyme for over a year and am on my 3rd recurrence of symptoms. Right now i’m trying herbal stuff (under the care of a professional) rather than antibiotics. She doesnt have a lot of Lyme experience but is researching more for me. Do you have any experience or recommendations regarding herbal vs antibiotics? And physician recommendations? I’m an hour north of Pittsburgh, PA.
5. December 2011 at 10:11 am
Jo: Many people do use herbals to treat Lyme and some of its co-infections but many Lyme-literate naturopaths readily admit that antibiotics are also needed. PA Lyme info is on its way so you can find a Lyme specialist. It’s great your current professional wants to help, but if she doesn’t know much about Lyme, she probably won’t be helpful long-term. Lyme is a much more complex disease than most doctosr (and patients) realize. Thanks for asking.
29. November 2011 at 3:12 pm
I’ve been searching lyme disease for a few months now after meeting a co workers cousin who was diagnosed with it several years ago and is still battling it. The symptoms she mentioned hit home and while I am also well aware that lymes disease symptoms are very broad and different from person to person I have come to suspect I may have it. I grew up on a farm and can’t even begin to count the number of times I’ve been bit by a tick in my life. When I was three or four I had gotten that typical bullseye rash after a my mother had removed a tick from my back. She took me to the hospital and the Doctor treated me for lymes disease but never tested me for it from what I understand. From that age on I had chronic strep throat until removing my tonsils, ear infections until having tubes put in my ears and still to this day have a sinus infection almost year round. Anti biotics make me feel better for about a week sometimes a few weeks and then it always comes back. I am to the point now where I refuse to take antibiotics until they find out what is truly wrong with me. I was in the ER with severe neck pain, back pain, aches all over, swollen lymph nodes, light sensitivity and nausea about a 2 months ago and the told me I had meningitis and needed a spinal tap immediately. To my the Doctors and my family’s outrage I walked out. Its months later and I’m not dead. Obviously not meningitis. I’ve also always had trouble controlling my temper and or emotions since about the age of 8 or 9 even though in my mind while I’m acting I guess you could say ‘crazy’ I know its not me speaking. It’s some twisted reaction I can’t control. The things I ‘loose’ it over I could care less about seconds later but I can’t control it. My vision turns black for periods of times when I stand up or move quickly and has for years though its gotten worse. In the past probably 5 months its gotten a lot wore, I have had trouble controlling my temper and or emotions almost daily along with severe back and neck pain, random joint and muscle pains and aches, stomach cramps, sore throat, sore jaw and sides of face/head/neck, headaches that feel more like pressure on my skull and or neck and digestions problems to the point where I try not to eat because no matter what because I’m in pain for hours. I also have heart problems, fast resting heart rate and sometimes irregular beats, but I do have a family history of that. I’m just tired all the time. I used to spend hours outside on walks and then an hour in the gym almost daily, along with work and school, and now I do nothing but what I have to because of this. I know something has to be wrong because first and foremost I’m not even 25 years old, its not normal for a person my age to feel the way I do for no reason. I have no known health problems besides the chronic infections. I had a strep, flu, mono and std panel Every test came out negative. I had a thyroid test and it was well within normal results. My full blood panel also normal except my white blood count was 13 which I am told is high. Basically if anyone has any advice it would really be appreciated. I live near West Virginia University in West Virginia if anyone knows any specialists nearby, I’m having a hard time finding one closer than Washington D.C. Thank you for your time.
29. November 2011 at 9:12 pm
Elizabeth, you could very well have Lyme. Unfortunately as yet I have no resources for West Virginia. You will most likely have to travel to see a Lyme doctor, but please do it. Otherwise you could continue to be more and more debilitated. I’m sending Maryland and DC info. Glad you asked.
6. February 2012 at 9:07 am
Hello,
I have had chronic lyme for several years and now my husband and daughters have it. I am in VA and willing to travel since there does not seem to be a doctor in VA that has a clue of what we are experiencing. Who in DC and or Maryland do you recommend?
Please respond as soon as possible, as my 1 married daughter is now pregnant with lyme and having vision problems-HELP!
7. February 2012 at 10:47 am
Va Lyme info is being sent shortly, Lesa. There are doctors in your state who know how to diagnose and treat Lyme. Thanks for asking.
22. June 2012 at 9:27 pm
Elizabeth, has your MD ran tests for Bartonella? My daughter has chronic lyme, and after years, they also found that she also has Bartonella. Treatment is tricky, and so far, she’s had little relief from both diseases. Best of luck to you.
1. November 2011 at 9:04 pm
My daughter was bitten by a tick but it was apparently not embedded very long because it was still small and flat. She now has what appears to be a small red circle, slightly raised, with a small scab in the middle. It feels quite firm to the touch. Does this sound like a lyme response or something else?
2. November 2011 at 12:15 pm
K, what you describe is common for a tick bite. Your daughter may or may not have Lyme. Not everyone who has Lyme gets the typical bull’s eye rash. If your daughter has no other symptoms, it probably isn’t Lyme. But if you’d like to consult a Lyme specialist just to be sure, tell me where you live and I’ll send info. Thanks for asking.
19. November 2011 at 12:31 am
my five year old grandson picked up this red and black bug and showed it to us . we never seen one before . it bit him on the hand between his thumb and finger, brought the blood. three months later he started getting sick all he had was a small red dot owhere he got bit . he got tested and we were told he has lymes. he is on medication and has to see a specialist. where do they get it has to be attached 24 hours? the bug ended up to be a female deer tick.
19. November 2011 at 7:43 am
There’s lots of misinformation out there about Lyme, Alysia. I don’t think anyone can say for sure how long the tick has to be attached to transmit Lyme. I’m glad our grandson is being treated. If he sees a specialist who really knows how to treat Lyme, that’s good! Thanks for asking.
4. October 2011 at 8:31 pm
I have white lesion in the brain and spine but my sypmtoms makes me believe it is lyme although my neurologist believes it is multiple sclerosis and that lime does not happen here in USA , i am currently in new york city manhattan, can you help me please?
4. October 2011 at 10:01 pm
What doctor believes that Lyme doesn’t happen in the US? It’s practically everywhere. NYC Lyme info is on its way, Maryam. Glad you asked.
15. December 2011 at 12:02 pm
test
15. December 2011 at 3:12 pm
testing