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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4. October 2011 at 6:08 pm
I’m not sure you got this but I need info in the northern Calif. or southern Oregon area .I was bit 4weeks ago and have flu like symptoms and very stiff neck and back pain.No bulls eye or any other rash.I was bit in arm pit and it still has not healed just stays pink and the spot is sensitive to touch. Thanks Pam for all your work where would we go without you. Donn
4. October 2011 at 6:13 pm
Got it, replied, and sent you the info already, Donn. Check your spam folder. Posts here are moderated, meaning they don’t automatically get posted right away.
28. September 2011 at 9:26 am
Do you have any information on lyme disease–such as how to find a LLMD– in North Carolina? A doctor I saw recently categorically said it doesn’t exist in North Carolina, but I know people who do have it. Thanks.
28. September 2011 at 10:20 am
I get many requests for Lyme info from North Carolinians, Anne. My brother, in Cary, was treated for Lyme two years ago. There are doctors in other states with Lyme who are also telling their patients that Lyme doesn’t exist there. So frustrating. I’m sending you NC Lyme info so you can find someone who does know Lyme. Thanks for asking.
22. September 2011 at 8:23 pm
My name is Craig and i live in Northern, Mn. I am 41 and since July 26th 2011 my life has changed drastically. I came home from work on this day after feeling massively fatigued all day. I took a nap and wok up to what i perceived as a mild stroke or some other very serious medical event. My face was numb, my speech was slurred and i was confused. I couldnt walk straight and had intense motion sickness. My ears were ringing loudly. My breathing felt constricted in my throat and my heart was racing. It felt like I had spiderwebs all over my face. I went to ER and found nothing. The next day the entire left side of my face, neck and head were numb. I couldnt find words and would lose my words and thoughts in a drifting away tunnel effect. Over the next 3 weeks or so I went to the hospital with severe spells 4 more times, once by ambulance. I had MRI, CT scans, EKG and EEG plus blood work ups. NOT ONE ANSWER! I blacked out once for approx 15 min and had near blackout sensations for 3 hrs straight on Aug 16th, with pressure building in the left side of face and neck. No blockage or leisons. I was lost. On Aug 16th I woke up to most all neurological symptoms gone and now a neck I couldnt move, like severe whiplash. From that day until now I have suffered with neck, spine and low back pain. Facial and muscle twitches all over. Stabbing/shooting pains in my muscles randomly all over my body. Painful burning hands and feet. I saw a neurologist and he ordered a spinal puncture, sleep deprived EEG and EMG. Still waiting for results of spinal but they are looking for MS. In 2005 I had a tick scare when I discovered a bullseye behind my right knee in the shower. I blew it off until I started to become sick a month or so later. I was tested for Lyme and it was Neg. So in frustration I walked away untreated and defeated. Now looking back, since then I have had crazy random arthritic type pains, bouts of chronic fatigue, depression, overall doom/illness feeling and alot of unexplained events. My doctor did another Lyme test in Aug and it was Neg so she wont even consider or entertain the possibility of Lyme, even though I strongly believe it is based on symptoms. I desperately need to find a Dr. in the Duluth, Mn area who studies and understands this disease to help me. I have been out of work since July and my family is suffering financially. This has been a strain on us all so the quicker we get the proper help the better. I have great empathy for ALL who are suffering and having trouble getting someone to listen about Lyme or at least the possibility of it seriously taken. My best to you all and prayers. Craig
23. September 2011 at 3:53 am
Two things, Craig. A bull’s-eye rash is Lyme. The standard CDC Lyme test report a high number of false negatives. I’m sorry you’ve had to endure so many health problems that could’ve been treated for the last six years. I’m sending you MN Lyme info. Please find a Lyme doctor soon, even if you have to travel. Besides Lyme, you could also have one or more co-infections that often come with it. I’m sure you haven’t been tested for those either. Thanks for asking.
16. September 2011 at 5:30 pm
Hi Pam,
your quick responses to people in order to help them find adequate treatment is so admirable. I’ve visited your site many times before, but now need some info also.
A family member in central IL likely has Lyme and has quite serious symptoms & had an embedded tick. She has not been able to find a Dr. yet who has any ILADS knowledge. In fact, all the Drs she has seen have told her that Lyme is highly unlikely because IL is not an endemic state. Time keeps passing! I know about chronic Lyme & would very much like to help her avoid that.
I would appreciate any info on physicians in central IL or surrounding areas who are experienced with Lyme & co-infections, especially any who take most insurance plans.
Thanks so much in advance, L
17. September 2011 at 5:46 am
I’m sending you IL info for your family member, Lois. She’ll probably have to travel to find a Lyme-literate specialist. Thanks for asking and thanks also for your kind words.
13. September 2011 at 3:08 pm
Hello I am wondering about Lyme dr in the Albany, NY area.
13. September 2011 at 3:12 pm
I would type more and explain my familys story but my knuckles and wrists are too sore:(
13. September 2011 at 3:22 pm
Not to worry, Liz. I don’t need a story unless you feel the need to tell it.
13. September 2011 at 3:21 pm
NY Lyme info is on its way, Liz. Thanks for asking.
5. September 2011 at 12:33 am
I have been experiencing some pretty debilitating symptoms for the past seven years. Looking back it seems that I was a perfectly healthy, active individual and then overnight poof. I started experiencing a gamut of symptoms that now has gotten to the point that even the most basic activities are such a task. I have been to many specialists (cardiac, neurological, endocrine, internist, gastroenterologist, etc.) and the only thing that they seem to come up with is to attribute it to anxiety or stress. Looking for Lyme literate doctors in the Buffalo/Rochester NY area since my symptoms seem to perfectly coincide with chronic Lyme. Thank you for your help!
5. September 2011 at 3:32 pm
NY Lyme info is being sent, Loren. Your experience is unfortunately common. Many doctors tell people who eventually find out they have Lyme that their symptoms are anxiety or stress. Thanks for asking.
28. August 2011 at 7:22 pm
Help in Michigan (Detroit area) or anywhere near with finding a knowledgable doctor. What test are the best and most comprehensive?
I have removed two ticks in my life that I recall and have suffered from extreme fatigue, vision issues, depression, etc.
My father -in-law lives and runs a horse farm and one day his legs just started giving out and he would fall. He seems to have the most rapid dementia I have ever seen, he has gone from normal, social person to something resembling Alziemher’s in less than a year. He has had every test his doctors can think of, MRI, CatScan, etc.. I am wondering if this may be a case of Lymes.
29. August 2011 at 12:54 pm
Jennifer, MI Lyme info is on its way. You and your FIL should have a reliable Lyme test, either by IGeneX or MDL. Most Lyme-literate doctors use them. Thanks for asking.
22. August 2011 at 5:10 pm
I have been experiencing Lyme disease symptoms for over two years now and never realized that I might be infected. I don’t recall being bit by a tick, but I did work for NY State Parks for years. Lots of exposure to wooded areas. I’m in need of a Lyme-literate doctor near Albany N.Y. Any help would be much appreciated.
23. August 2011 at 2:47 pm
I’m sending NY Lyme info, Todd. Thanks for asking.
18. August 2011 at 12:12 am
I would love information for a good doctor in the Northern Virginia area where I live. My husband and kids walked through a nest of deer ticks and got several bites a piece, so I think it might be good to get them tested.
Reading over this though I think me and my sisters may all have had Lyme disease for years, so if it’s not too much trouble I’d love to pass information on to them in Southern Indiana (Louisville, Kentucky is an hour away and Bloomington, Indiana about an hour and a half, so either of those places would be fine), also Salt Lake City, UT and Missoula, MT. We’ve all suffered from unexplained fatigue and joint pain since we were teen agers. Growing up in the country finding ticks was not uncommon either, so this may explain a lot.
Thanks,
Mary Anne
20. August 2011 at 11:51 am
Mary Anne, I’m sending you the information you requested. There are more choices for Lyme-literate doctors in VA than in in the other states. Thanks for asking.
2. September 2011 at 10:03 pm
I live in Flint Hill Va …west of NOVA about 40 miles would you please send me the list of LLMDs in my area… I have just started treated with my family dr but have been really sick the last month….they have put me on doxycycline 100 mg 2X a day…I got worse in 2 days so they changed me to levofloxacin 500mg 1x day.
I have called a few LLMD’s but they say I have to pay $500.00 a visit Cash, no insurance accepted plus cost of anything they do. How does people afford this ?
Thanks for any info
Sam
3. September 2011 at 1:45 pm
Sam, too bad your family doctor didn’t know that worse symptoms usually happen with Lyme treatment. It’s called the Herxheimer reaction. – a good sign that the Lyme is being killed. This can usually be handled with supplements and probiotics (which your doctor probably also didn’t tell you to take).
I’m sending you VA Lyme info shortly.
Yes, Lyme treatment is expensive. And you can thank the Infectious Diseases Society of America (IDSA) for Lyme doctors deciding not to take medical insurance. Medical insurance companies (and some Lyme patients) have reported Lyme doctors to their state medical boards for the “unorthodox” use of antibiotics (IDSA guidelines say 2 weeks of Doxycycline and there’s no such thing as chronic Lyme). The doctors have been brought up for hearings, fined, and threatened with loss of their medical licenses (several have lost their right to practice in a state and have had to move).
Thanks for asking.
16. August 2011 at 9:03 pm
Hi Pam so glad I found this website you are so helpful.After years of feeling all the symptoms of Lyme they now said I have it I had 3 tests allready that show positive result of 1.70 positive is 1.10 and over so it explains all those symptoms I choose to ignore since working out really helps me feel alot better.I have been put on antibiotics a few years ago but nothing good came of it. The Doctors were like that’s it nothing left to do.I just went back this year to get retested and I still have it now I’am being referred to a endocrinologist for thyroid but I’am more concerned with getting help with Lyme once and for all. They told me to contact public health but what can they do?.I feel like they don’t care like a lab rat.I don’t know what route to take with this since they seem clueless and more interested in the fact that I have lyme which is rare in my area.I really need advice because my health plan works on referrals.I feel like a hopeless like what could I do I’ve been getting the runaround for 5 years now.THANKS.
17. August 2011 at 9:22 am
May, if you have Lyme, you need to be treated by someone who knows what they’re doing. It’s nice to have health insurance, but if you think the only care you can get is through referrals, you’ll probably never be treated properly. Tell me where you live and I’ll send you info on how to find a Lyme doctor. Many of them do take insurance. Thanks for asking.
12. August 2011 at 5:41 am
Hi Pam, Just found your blog and its very interesting. I am hoping you can give me some insight. I was bitten by a black flying insect 3x near a beach in Suffolk Cty, NY. 24hrs later had welts and within 2 days a cellulitis set in. I cleansed it well and then took CIPRO for 4 days (couldn’t take it any longer because my ankles hurt incredibly )Now, 1 month later, joint pain in hands and feet, muscle aches, headaches, chills, stiff neck, fatigue, breast pain, brain fog. Saw a rheumotologist last week- took 7 vials of blood to test for “3 different types of Lyme” and/or other infections.Started Doxycycline 2x/day and take 2 acetomenophen 650mg every 8hrs for pain. How long before I start to feel better? Is there anything I can do to help ease the pain and sleep better? I continue to work part-time but its difficult. Mornings are better than night. Any help is greatly appreciated!
12. August 2011 at 10:06 am
Lyn: Your experience, like that of many others with Lyme, shows that you can get it from other biting insects besides ticks. I don’t know what “3 different types of Lyme” is. There’s only one Lyme. But it can affect different parts of the body. It’s good you’re on Doxy. Hopefully your doctor prescribed more than 2 weeks of pills. You may not feel better for a while. Many people with Lyme experience a worsening of symptoms due to a Herxheimer reaction. But this is good. It means the organism is being killed. Also, most people with Lyme have trouble sleeping. I’ve found that Benadryl helps. I’m not big on taking prescription sleeping pills, but you could ask your doctor for those if you need them. An herbal medication I’ve used for pain is Zyflamend, which you can get at your health food store. Again, more heavy duty prescrption pain medicatins are available but I try to avoid them as much as possible.
I’m concerned you might not get the continued care you need from your current doctor if he/she isn’t Lyme-literate. If you tell me where you live, I can send you info on how to find one near you.
Thanks for asking.
31. July 2011 at 1:42 pm
Hi, Do I have Lymes Disease.. Last fall I went to the ER for feeling very faint and weak. After 10 hours they found nothing. later PC said I had hypoglycemia. In May it happened again. Again they found nothing. One doctor said menopause and to take ativan and antidepressents, another said anxiety attacks. Every day I have no energy, trouble sleeping, waking up over and over again, a racing heart and lightheadedness that passes, but it happens every day now since beginning of May. I never had issues with panic or stress before now and familly doctor said no and is sending me to an endoc. specialist out of town.. I have noticed the left side of my face is droopy from by mouth to chin. I don’t know if I was ever bit, but I live in NW Pa and we have tons of deer ticks around here. Everyday I just wish if I could figure this out. Can an endoc. know if I have lymes’ disease? My appointment is in 3 days. HELP!
1. August 2011 at 12:51 pm
An Endocrinologist might know if you have Lyme, but I doubt it, Barbara. Instead of testing for Lyme first if it’s suspected (or if a patient asked to be tested), most doctors look for lots of other reasons (requiring lots of other tests and medications). I’m sending you PA Lyme info. Why don’t you see if you can find a Lyme-literate doctor to test you. Thanks for asking.
30. July 2011 at 7:00 pm
hi. I have had chronic fatique and fibromyalgia issues for years. If i eat well and exercise i generally can maintain good energy but the problems are always there. for the past 4 years i have developed ankle weakness, sometimes one and sometimes the other and sometimes both. one month ago i had an episode that lasted 6 days: severe pain and swelling to both ankles and wrists, swelling continued to practically my whole body, moved to my arms and shoulders, very painful to even lift a spoon, unable to turn self in bed, Left jaw swelling and couldnt close teeth well to eat, had neck pain and swelling and chills and general aches. Went to the doctor and was tested for many many things. i requested further testing for Lyme disease and he said that he would send me to an Infectious Disease MD if i insisted. he warned me that most doctors here in austin, tx do not believe lyme disease exists and that the MD he was sending me to may not be very nice to me because she deals mostly with life threatening infections. Do you know of someone in this area, Austin, Tx that would be more likely to send more tests and the right tests? Thanks.
1. August 2011 at 12:04 pm
TX Lyme info is on its way, Diane. Ask around until you’ve identified the knowledgeable Lyme doctors in your area. Thanks for asking.
25. July 2011 at 2:43 pm
Hi, I got bit when I was 15 (12 years ago), and just met a girl with Lyme and told me to get checked. I have all the bad symptoms. The migraines, facial numbness, fingers and hands going numb, multiple medical issues that seem to be unexplainable, and of course all the doctors saying that all my pain is in my head. It’s driving me nuts. I have my dr. appt soon to get tested, but I’m pretty sure it will show I have it.
If I already have the numbing and paralasis and joint pain, vision problems, will it get better? Or do I just have really bad luck and too late to get better….
26. July 2011 at 10:29 am
It’s not too late to get better from the symptoms you have if they’re Lyme, Destin. It just will take you longer (as in years) to heal, unlike people who’ve just been bitten by an infected tick. As for the test your doctor does showing you have Lyme, don’t count on it. No test for Lyme is 100% reliable, especially the ones from the CDC, which most regular doctors use. If you tell me where you live, I can send you info on how to find a doctors who knows how to diagnose and treat Lyme.
28. July 2011 at 10:10 pm
Hi I live in Sonoma, Ca. Is there someone around here you would recommend?
29. July 2011 at 11:01 am
I’m sending you CA Lyme info, Tamara. Thanks for asking.
30. July 2011 at 7:05 pm
Where do I go to get a Western Blot to see if I have Lyme Disease? Also, if I do have Lyme, than I’ve had it for two years. Should I be worried about this affecting me for the rest of my life? Also, What are the treatment options? Are they intense? My symptoms have all been short lived but intense (hospitalized for flu, mono (swollen glands), sinusitis).
I live in Memphis, Tennessee.
1. August 2011 at 12:12 pm
Most Lyme-literate doctors use the IGeneX Western Blot, currently considered the gold standard. Most regular doctors use the CDC ELISA and Western Blot tests, which return many false negatives. If you’ve had Lyme for two years or more (I probably had it for 35 years before it was diagnosed), you can get it under control with treatment but it may affect you for the rest of your life. Treatment options are all over the map. Most Lyme doctors use prescription antibiotics. Some combine antibiotics with alternative methods. And some only go the alternative route. I can say that the antibiotic route is usually intense. You also should be tested for co-infections (Babesia, Bartonella, and Ehrlichia), which often come with the Lyme. Many Lyme patients also have other pathogens that get activated with Lyme (which does a number on your immune system) – Mycoplasma and Chlamydia pneumoniaes, Epstein-Barr Virus, Cytomegalovirus, HHV-6, Coxackie virus, Parvovirus and others.
I’m sending you TN Lyme info ASAP. Travel if you must to see a doctor who knows what he’s doing. Thanks for asking.
17. July 2011 at 6:17 pm
Hi,
April 26, 2010, I pulled a Deer Tick off of me. On May 23,2010 I was taken by ambulance to local ER in Respritory Distress Dr.’s said “Asthma” (45 yr old female never had asthma in my life) Sent me home. On June 13,2010 I was getting ready for church, after my shower I looked in the mirror & wow, Bull’s eyes!!! I had felt like I had major flu for many days prior & had mentioned it when I was at the ER before. A neighbor went to our church & got my husband to come home to me (he is the Pastor) He immediately saw me & said” Lyme’s you are going to the hospital now!” He drove me straight to the Er. I was admitted in as a level 2 trauma patient. immediately started on Doxycyclyne before any tests were taken. I was dehydrated, high fever, rashed out, very ill.My veins collapsed over & over I lost 17lbs.,CDC came in & saw me at the hospital. I spent 9 days in the hospital. Once I was released that is all I was treated for no follow up care. I started to get really sick in Aug.2010 & I continued to loose weight, fatigued, loose muscle mass, hair loss, muscle craps, bone pain, joint pain, my vision started blurring,loss of sleep, cold & hot, loss of appetite, moodiness,numerous issues developed from Aug. 2010 through May 2. 2011, I went for a Referral to a Specialist because of Palmoplantar psoriasis I had developed as well as Psoriatic arthritis. My quality of life has gone from 100% function April 2010 to 20% 2011. I take 1000 mg Tetracycline per day since May,2011. June 17,2011 I was bit by 4 more ticks 1, Lonestar ticks, 1 tick bite rashed out the other 3 did not, I ended up in the hospital again. I was to be admitted but because I am taking the amount of tetracycline I would be fine at home if any further symptoms come back. well gee whiz I have been having symptoms for over a year now more to go with it. I am at the end of my rope. I weigh 113lbs. now Dr.’s want to do blood infusions. My white cells are very high. high alkaline counts. liver enzyemses. Sometimes my days are so bad that I have to use a wheel chair to get around.I need a good Dr. that knows how to treat patients with Tick=borne illness in or around Gainesville Florida or at least 100 mile raius if anyone can help.
thanks,
Shellie
18. July 2011 at 10:18 am
Shellie, I’m sending you FL Lyme info. See someone who knows how to treat Lyme ASAP. Thanks for sharing your story.
27. June 2011 at 8:49 pm
hi, i got dx finally this year. Have suffered since 1988 or before. I am now on a great antibiotic (on week 3) and feel normal. How long do i need to take this one (Bactrim); in 1998 i took it for 5 months and got my life back but then got bit again. Do i need 5 months again? Will it get it all? I have done chelation and loads of other stuff. Do you know what bacteria Bactrim is good for (what co-infection)? I have brain fog, cortisol balancing problems, bladder/kidney irritation, mood changes, personality gets very quiet, pain causing weakness in my pelvic region and low back (especially when bladder is upset). All symptoms are gone right now. Still on 1/2 antiinflamitory (Voltarin) – that stuff saved my life. I tested positive for lyme on the igenex test igg and igm. cdc only positive on igm. any help would be appreciated.
28. June 2011 at 12:21 pm
Carol, here’s what I know. Bactrim is used for a variety of bacterial infections, including Lyme and Bartonella. Only a doctor can tell you how long you need to take a medication. If your Lyme keeps coming back, you aren’t being treated long enough. If you get bitten again by an infected tick, you need treatment again. One reason to stay on antibiotics for longer than 5 months is that some of the Lyme becomes drug resistant and some of it turns into cysts and hides out where the antibiotics can’t reach it. Your don’t say what co-infections you have. Your urinary tract problems could be due to some specie of Mycoplasma.
In short, you’ve had Lyme for a long time. It’s not reasonable to expect that you’ll be able to get rid of it with 5 months of treatment. Most people with very long-term Lyme have to go back on a course of antibiotics every once in a while.
Hope this helps. Thanks for asking.
21. June 2011 at 3:58 pm
Interesting reading since I’ve been struggling with undiagnosed health issues for the past year and a half. I WAS stung by a wasp twice Labor Day weekend of 2010 and my symptoms began in December although I had no bullseye rash following the wasp sting. Can anyone comment on whether wasps can be a vector for Lyme? I’m also a hiker and hiked a bit on the East Coast six months prior to becoming ill although I have no recollection of a tick bite or a rash following the hiking.
My symptoms include: hair loss, iron-deficiency anemia, 3 unexplained faints (the first in 2/10 and the last 11/10), newly developed chemical sensitivities which are expanding and worsening, cognitive issues (memory/focus problems), etc.
Would appreciate any referral info. you have for a CAPABLE Lyme dr. in the Metro Detroit area.
Thanks much and wishing everyone here health and recovery.
22. June 2011 at 10:59 am
Nancy: I’ve never heard of anyone getting Lyme from a wasp sting. People have, however, gotten it from biting insects other than ticks (e.g., flies, mosquitoes, fleas), although you won’t see much official written about that.
I think you should rule out Lyme before looking for other causes of your symptoms. MI Lyme info is on the way. Unfortunately I don’t (yet) have a list of LLMD names to send you, but the Lyme support folks in your area should be able to point you to them. Thanks for asking.
17. June 2011 at 6:36 pm
Hi,
Could you point me to a Lyme literate doctor in the Newton or Wellesley area near Boston MA?
Thank you
18. June 2011 at 1:01 pm
Sure, Jeff. MA Lyme info is on its way. Glad you asked. Thanks.
8. June 2011 at 10:02 am
Hello,
About 6 or 7 years ago, I pulled, what I though was a spider at the time, off my head. I felt a bump on my head. At first I actually thought it was a really bumpy scab. I used my nail to lift it off, since it was really stuck on! When I actually looked at it, I thought it was a spider, was a bit spooked, but then I thought nothing more of it. I had never encountered a tick and much less…knew anything about Lyme disease! I recall being at work around that time and having severe flu like symptoms and was sent home. Thinking back, even if I would’ve had the bulls-eye rash, I never noticed it because it would’ve been on my head. Around that time I had been to Colorado and Texas and I know I did some hiking.
Anyway, over the years, I’ve experienced severe light-headedness, trouble focusing my vision, brain fog, chronic fatigue. Having all these things on an almost daily basis has also resulted in anxiety issues, because I just don’t know what’s going on with me and haven’t felt like myself in ages. My current doctor ordered a test for Lyme disease which turned out to be negative. He did explain that just because the test was negative didn’t mean I didn’t still have Lyme. I was treated shortly with zythromax, but had to discontinue because of a pregnancy. I’m interested in treatment, but want to know if there’s any way to know for sure if this is what I have. I seriously feel like I’m going crazy and all other doctors before this one were quick to tell me that I was just stressed, had an anxiety disorder or possibly fibromyalgia. I have real symptoms that are interfering with my everyday life and being dismissed by doctors has to be the worst feeling of all. My symptom list is growing and I am growing more concerned. Any advice would be greatly appreciated!!
Diana
Chicago, Illinois
8. June 2011 at 11:01 am
Diana, you need to see a doctor who knows how to diagnose and treat Lyme. Northern IL Lyme info is being sent shortly. Find a knowledgeable doctor ASAP. You aren’t crazy and it’s not just stress. Glad you asked.
19. June 2011 at 9:55 pm
Pam, can you send me info on lyme literate doctors around the Chicago area. I have been feeling sick for over 2 years, mostly dizzy, light headed, fatigue, headaches, ringing in the years, foggy vision, body aches, and lots of other symptoms. The dizziness, light headed feeling, and fatigue are driving me nuts. I know I was bit by a tick over the summer about 3 years ago. Had someone pull it out and didn’t think much of it. Never remember having the classic rash, but about couple months after the bite started having some minor symptoms that have escalated since then. Been numerous times to the doctor and different specialists, have had lots of tests done that always come back OK, besides my gallbladder going bad which was removed in October of last year. I was hoping most of the symptoms were from my gallbladder issue, was fine about a week after surgery for about a week, then the dizziness and everything came back, minor at first, then escalated again. Now I am wondering if antibiotics had some sort of an effect for a bit after surgery. I know something isn’t right with me and most of the doctors just want to prescribe drugs for the symptoms, which don’t really work. Plus tired of being told it’s anxiety or stress related.
20. June 2011 at 5:23 pm
Doctors who don’t know Lyme usually use “anxiety” and “stress” as their fallbacks. I’m sending you IL Lyme info, Grace. Find someone who knows how to diagnose and treat Lyme. You’ve been on a wide goose chase long enough. Thanks for asking.
7. June 2011 at 12:32 pm
Pam, my partner was diagonsed five years ago and began treatment about two years ago. He has given up and stopped the protocol about nine months ago. We live in Asheville, NC and must travel to Lexington, VA for to see a credible doctor. Can you recommend someone locally? I am at my wit’s end; he has given up and I know the Lyme’s is really attacking, again. Any suggestions would be very appreciated.
7. June 2011 at 12:50 pm
I don’t have info for western NC, Jennifer. I’ll send NC info I do have plus GA. Hopefully you can find someone closer. Thanks for asking.
30. May 2011 at 5:45 pm
My son, who is now 18 has been ill for over 6 years with multiple undiagnosed illnesses. He has had migraines and ataxia that lasted for 4 months or longer, skin issues, stomach issues, and syncope multiple times daily for more than a year. This will continue for months and then stop for months. We have seen all of the major specialists in So. Cal. We’ve been to CHOC, CHLA, USC, UCLA, Huntington Neurological center and local hospitals as well as psychologists, acupuncturists – you name it. He was tested for Lyme at the very beginning of this in 2005 but I am wondering if I should push to have him tested again. Would you please send me information on Lyme specialists in this area? We are currently on a 15 month waiting list for Mayo Minnesota and are out of ideas.
30. May 2011 at 7:08 pm
So Cal inf is being sent, Tanya. FYI – Mayo in Jacksonville, FL refers patients to my Lyme Dr. in Orlando. I think an opinion from a Lyme-literate physician would be worthwhile. A neurologist, neurosurgeon, and rheumatologist missed my Lyme 30 years ago.
24. May 2011 at 10:28 am
My brother just posted that he was taking antibiotics for Lyme disease and wanting to know what it was, I Googled it – and found this site. I am in awe – especially with the post above mine. I cannot recall ever being bit by a tick, but I have spent many days hiking where ticks were.
Maybe I’m grasping at straws by this point. You see, over the last 4 years, I have not been myself at all. It started with migraines, then extreme pain in my jaw – weight gain. I was diagnosed with Trigeminal Neuralgia, but after taking medication for a month, I stopped because it made me too tired (I was already overly tired every day). I haven’t had the pain in my face since, but I do have pain everywhere else. I feel like my nerves are in overload. My arms and legs fall asleep ALL THE TIME – sometimes my leg will fall asleep 5 minutes after I have been walking around. I have incredible mood swings, my back and neck are always stiff. When I turn my head side to side, it sounds like breaking spaghetti. Every time I stretch, I get charlie horses. My legs swell frequently, and I get muscle cramps in my calves.
No Dr. will listen to me period. The last Dr. I had said “you need surgery on your ulnar nerve” but to me – I think it’s too coincidental to be diagnosed with 2 separate nerve issues, I also have frequent sciatic pain, I just don’t feel that they AREN’T connected. I currently live in Palmdale, CA. I moved here a year and a half ago from northern CA, where I spent most of my life.
24. May 2011 at 10:36 am
I’m big on ruling Lyme out before looking for other reasons for a bunch of different symptoms. LA area Lyme info is on it’s way to you, Suzanne. Find a Lyme doctor and get tested. Then you’ll know. Thanks for asking.
24. May 2011 at 2:25 pm
I am looking for a Dr in southern Indiana that could help me. I have had numerous tick bites and ones I haven’t found for who knows how long. after telling my dr for years I was so tired I couldn’t get out of bed (he diagnosed me as depressed), I finally convinced him to do a lyme test on me and it came back positive, I was treated for a week and was told I was cured. But now I am experiencing the same horrible symptoms as before only its been several years since I was treated the last time. Because I am on mental health meds, I feel my dr doesnt take me seriously. But I know I am feeling horrible. headaches, fever chills, blurred vision, just so tired I cant hardly get up out of bed. please help me… I am in need of a dr that will listen to me and not think I am nuts….
24. May 2011 at 4:01 pm
I’m sending Lyme info for your area ASAP, Anna. A week of treatment wasn’t enough to cure your Lyme. Among other things, Lyme can mimic all the psychiatric disorders. Please find someone who knows how to treat Lyme, even if it means you have to travel. Thanks for asking. Best wishes!
20. May 2011 at 10:54 pm
Great post, Pam. Thanks for pointing out that article. Excellent. Hope you are well. XOXOX Kathy
21. May 2011 at 6:09 am
Thank, Kathy!
18. May 2011 at 5:43 am
Thank you for this. I have been really struggling with this lately. Great post!
18. May 2011 at 10:45 am
Glad it was helpful, Martha. Always nice to hear from you.
17. May 2011 at 10:01 pm
Thank you for taking the time to express what many of us go through and are currently going through. I was actually told by my P.C. doctor that Lyme disease did not exist in California when I asked him on five different occasions as my infection progressed outwards from a distinct bull’s-eye rash after a confirmed tick bite. This was in 2000 and I went to the E.R. with Bells palsy and was told again that it could not be Lyme disease because we did not have that here. I had read a sportsmen’s magazine and I had every classic progressive symptom, so I said please test me and surprise I was positive for Lyme.
It’s now over a decade later and as I seek further help, they say it’s anxiety. Again I had to diagnose myself and figure out why I am not functioning within some degree of normal. This time I found all of my symptoms listed online over and over again as I checked sites. It is beyond frustrating just trying to convince my new P.C. doctor that there really is something majorly wrong causing illness throughout my body. She seized upon the quickest possibility (anxiety) and would not even examine me. To be fair, it is a county-run health care program and I realize the limitations of time and proficiency, but the lack of awareness and knowledge even a decade later surprises me. Had she bothered to look, I could have shown her my bones deforming with a very aggressive arthritis. The sound of my constantly stiff neck as I turn it is self explanatory. The neurological manifestations are numerous; I have a decades worth of bizarre ailments that fill a full page. They are all classic manifestations of Lyme complications
I consider myself lucky because she gave me referrals to several specialists and it may help in confirming my symptoms and finally getting some help again. That’s if I don’t have to spend all of my time just trying to convince them of the existence of my symptoms and of the long term effects I have been suffering from. That’s still many months away, but it’s all the hope I have now. Wish me luck I’m going to need it.
18. May 2011 at 10:54 am
Sadly, Thomas, your story is not uncommon. So many doctors don’t know about Lyme and treat people with undiagnosed Lyme for individual symptoms instead of the underlying bacterial cause.
I applaud you for taking responsibility for your situation and fighting for what you need. In my opinion, your Lyme journey would be easier if you found a Lyme-literate doctor who you wouldn’t have to convince of anything. I can send you info on how to find an LLMD if you tell me where you live.