Guest post by Doug M, New York State.
Lyme disease continues to amaze me with its astonishingly varied and complex combinations of symptoms. Perhaps it might be helpful if I described my own journey.
I first complained to my doctor in 1988 about shoulder pain. “Bursitis” he said, and wrote it in my record as a “complaint.” Over the next few years I complained of swollen neck and throat glands, sore throats, one-sided headaches, all of which lasted from a few hours to a few days. “Coxsackie Fever,” he pronounced once, but denied saying later. Back and rib pain, a knee that swelled up overnight, sores on tooth margins, tinnitus. What a menagerie of complaints! A frustrating aspect of these complaints was that they kept moving around — head to neck to ribs to back to hip and back up the to the head again. Multiple CDC ELISA and Western Blot Lyme tests allegedly showed that I was negative for Lyme, though in retrospect I think that was the lab’s skewed interpretations that the doc believed unquestioningly.
Stir into my symptom mix sensitivity to light, random muscle spasms, day and night sweats, foot pain, and increased eye floaters. I did try another doctor, who lectured me on the unlikely possibility of having Lyme. Finally in 2002 I went to an LLMD who catalogued my symptoms, repeated the tests at a more competent lab, and ruled out other diseases that Lyme mimics. “Lyme,” she eventually announced, with possible Bartonella. Fortunately for me my Lyme disease symptoms, compared to others in her waiting room, were relatively mild, not disabling but very annoying. What sent me into treatment was the prospect of these symptoms getting progressively worse and irreversible — a possibility, not a probability. But still.
Since 2002 I’ve had four courses of antibiotic treatment, one lasting only a few weeks, another lasting a year and a half. I’ve had a total of 330 daily IVs, some just Rocephin, some with Zithromax as well. I’ve used eleven different antibiotics over these nine years. I’ve also been “drug free” for as long as two years in between. The symptoms can be beaten back; I’ve enjoyed significant relief for months at a time. Complicating things now, though, are complaints that have as much to do with aging (herniated discs, arthritis) since I’m now Medicare eligible.
Over the years my Lyme-literate doctor has developed a construct as to which symptoms, in which combinations, signify Lyme, which suggest Bartonella, Ehrlichia or Babesia, and which antibiotics or combinations of antibiotics might be effective for each individual patient. She also carefully monitors my liver function and other parameters on a bi-weekly basis. Our doctor-patient relationship seems to be working quite well, to the benefit of my health and well-being.
While I may never be completely symptom free, at least I know that I can deal with the symptoms when they return and beat them back when I need to. Lyme disease is such a complicated illness, but it is manageable if you have a doctor who knows how to tackle it over the long term.
For an excellent book on diagnosing and treating Lyme disease within one family, I highly recommend Cure Unknown: Inside the Lyme Epidemic
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22. February 2012 at 7:21 am
I asked for MD licensed Lyme doc, is there a possibility that you can refer me to a DC also because I am nearer to DC. I live here in Silver Spring,MD just the border of DC and MD. I am on my 4th day of antibiotic and I feel getting weaker esp on my legs. Help me.
22. February 2012 at 7:27 am
Dina, I sent you DC area Lyme info 30 minutes ago. If you didn’t receive it, check your spam folder. Re: feeling weaker on your 4th day of antibiotic, that’s common. It’s called the Herxheimer reaction. Symptoms often get worse on treatment before they get better. Make sure you’re taking a good probiotic, getting enough rest, and using herbal support for your liver and kidneys, which have to work hard to eliminate the dead organisms.
20. February 2012 at 10:00 pm
Hi, I won’t go into all my symptoms or length of illness, but I have a confirmed test of Lyme. I recall the tick bite about 4 years ago, so I suppose my illness would be considered chronic at this point. I also have been diagnosed with chlamydia pneumoniae. I am a bit frustrated by my practitioner’s focus on the CP, which I do understand is important, but I feel the Lyme also needs to be treated. Is there a good Lyme doctor in Middle TN or even within 2-3 hours drive? Thanks
21. February 2012 at 4:43 pm
TN Lyme info is on its way, Sandra. Many of us with Lyme also have Chlamydia pneumoniae. While it is important to treat, Lyme is the more immunosuppressive. You should also be tested for the Lyme co-infections Babesia, Bartonella, Ehrlichia, and Anaplasmosis. Most people with Lyme also have one of these. Thanks for asking.
20. February 2012 at 5:44 pm
Hello,
I too have many symptoms of Lyme. A friend whose entire family had Lyme emailed me not long ago and said that from my symptoms I should be checked for Lyme and that she is almost 100% that I have it. My neurologist has ruled out MS with a brain MRI, did an ultrasound of my thyroid, and that came back normal.
My symptoms have run the gamut for 5 years. I first saw a chiropractor in 2007 for frozen shoulder. Which progressed into neck pain during college. I was on anxiety medication just so I could pass with my heavy senior year course load at Penn State. I did graduate, even with recurring symptoms like memory problems and brain fog. Now I’ve been to many chiropractors, physical therapists, acupuncturists, and have my neurologist on speed dial. I’ve had MRIs and CT scans, which have shown degenerative disc disease. I’ve now been experiencing disc and nerve pain in my lower back, after undergoing 4 months of physical therapy for a pinched nerve in my NECK. I’ve sought out massage therapy as recent as this past weekend, and have an appointment in JUNE or JULY to see [doctor's name removed], who has been recommended to me by that same friend. I now have muscle spasms in both legs, an onslaught of dizziness and lightheadedness, vertigo, and increasing sinus problems. I have had chronic sinusitis for about two years now, even having surgery in December 2010, which seemingly never helped because I still have sinus pressure, headaches, and the lump in my throat. I experience constant fatigue, excessive sweating, hair shedding and always cold.
Do you know of a Lyme specialist in the Washington, DC area who isn’t so expensive? The first appointment with [doctor's name removed] will cost $750. What’s the use of having health insurance when specialists who do not accept any form of health insurance have such astronomical rates?
Shannon
20. February 2012 at 8:05 pm
Shannon, I’m sending you DC Lyme info so you can find another LLMD who isn’t as expensive as the one you mentioned. (Sorry to have to remove this doctor’s name; it’s an online convention not to name Lyme doctors in public forms and blogs to protect them from being harassed by their state medical boards). Some insurance companies have reported Lyme doctors to their medical boards for the “unorthodox” use of antibiotics to treat patients. It’s because of this harassment that many doctors who treat Lyme have stopped taking medical insurance.
18. February 2012 at 12:50 am
Could you please send me info for a LLMD in Littleton Co.
18. February 2012 at 6:52 am
CO Lyme info is on the way, Renee. Thanks for asking.
16. February 2012 at 9:17 pm
Hi, I tested neg on the Western blot test. I had a tick removed 18 years ago when it had embedded under my skin..no clue how long it was there as the skin was grown over it. The doctor removed it in peices. I was never tested back then. A year later I got pregnant with my daughter. She is now 16, diagnosed with bi-polar, and has arthritis in her shoulder and a heart murmur. I was diagnosed with multiple sclerosis 12 years ago, but so far have mostly eye probs, arthritis in my ankle, wrist, neck, back and one knee, and numerous gastrointestinal problems, especially with gallbladder. MS causes none of those, other than the eye probs. I tested NEG today. HOW??? I am sure both my daughter and I have this, and NOT what we were diagnosed with. I get heart palpitations a lot, and am worried my doc is going to let this go. Are there any good Lymes docs in the Marysville, Grass Valley, Auburn CA area? Would the test be a false negative because of how long ago the tick happened?
17. February 2012 at 2:43 pm
Carrie, the Lyme tests most regular doctors use are very unreliable, reporting many false negatives. A more accurate test can tell if you have Lyme no matter how long you’ve had it. I’m sending you CA Lyme info so you and your daughter can find a doctor who knows about Lyme. Please don’t stay with any doctor who can’t help you, no matter how long you’ve been seen by them or how much you like them. Glad you asked.
16. February 2012 at 12:23 pm
I tested positive on the Lyme Western Blot test. Do you have any info for Lyme literate doctors in Madison, WI? For the co-infections: Babesia, Bartonella, Ehrlichia, and Anaplasmosis- is there a separate test for each one? My main symptom is traveling or migratory joint pain, which appears every few months.
16. February 2012 at 2:19 pm
The co-infections tests are separate tests, Wiley. I’m sending you WI Lyme info so you can find a Lyme specialist. Most regular doctors don’t know how to treat it adequately. Add in a co-infection or two and they’re lost. Thanks for asking.
16. February 2012 at 2:21 am
Hi, could you please send me info for drs in Alabama? Also maybe surroundingb states also (TN, FL, GA, MS)? Every dr just wants to diagnose me as having MS.
16. February 2012 at 2:05 pm
AL and surrounding states info is on its way, Tiffany. If you do have Lyme, it would be helpful to see someone who knows how to diagnose it right. Thanks for asking.
15. February 2012 at 4:03 pm
I need a specialist for my daughter in California, preferably in Placer County, El Dorado County or Sacramento area.
Thank you, she truly needs help now she was bitten by a tick 25 years ago. and is very ill now in the last year.
15. February 2012 at 9:41 pm
CA Lyme info coming up, Diana. Thanks for asking.
15. February 2012 at 9:53 am
Could you give me info Madison, WI. My husband has numerous symptoms over the last2-3 years, it always seems to be something. I think it is complicated by the fact he has migraines since a kids along with diagnosed lower back problems, over the last 2-3 years the other symptoms seem to be all over the place. At first we would joke he is a hypochondriac, and that he loves going to the doctor, but then shoulder and foot pain, neck stiffness, tension headaches, chest pain, gastroenteritis, teeth sensitivity, TMJ like symptoms, now this last year has been hard it seems his symptoms are more neurological, brain fog, a feeling of increased response time from thought to completion of physical movement, decreased energy, and with the trips to the doctor finding nothing, since they are focused on it must be from his migraines, depression. He was tested for lymes a year or so ago but it was negative, however nothing has provided relief, from anti-depressants to all the preventative migraine treatments.
15. February 2012 at 11:19 am
Jeanne, I’m sending WI Lyme info so your husband can find a Lyme specialist. As you’ve probably already read, most regular doctors use the CDC Lyme tests, which are famously unreliable, reporting many false negatives. Thanks for asking.
8. February 2012 at 1:42 pm
Hi! I’ve been going through a bunch of junk for 4 months now. Started in late September with issues with my right knee. Went to an orthopedic and he sent me for an MRI. Showed synovitis (inflamation of the synovial fluid), and arthritis setting in. Sent me for physical therapy. Right before Christmas, I had tingling sensations non stop in that same leg for about a week, and I couldn’t bend it more than 90 degrees. Demanded blood work and that was when he said my lyme antibody was high at 4.85 and asked me if I was ever treated for lyme before. But the western blot had band 41 and band 58 as reactive, but still negative in the eyes of the doctor. Sent me to an infectious disease doctor, which was a waste. Took blood again with the same results. Said I definitely don’t have lyme, but can’t understand why a 40 year old female would have arthritis in the knee. A week after that, I felt like someone punched me in the back by my right shoulder blade. AFter this pain for 2 weeks, went to my primary who thinks I have a pinched nerve or bulging disc. I really don’t think so. The pain is radiating up to my shoulder. Gave me a muscle relaxor, but it isn’t working at all. finally convinced me to give my doxy because I never had positive results on my lyme tests in the past. Had a bad spider bite on my right butt cheek in Oct 2010 that led to cellulitis that was 5″ round diameter. My entire cheek was like a red sunburn. Took Keflex at the time, but now wondering if that was when lyme was transmitted. Heard that spiders can transmit the disease. But I do have a lot of ticks in my yard and pull them off my dog every day in the autumn. I live in the Hudson Valley, NY. By the way, I have brain fog, can’t sleep solid anymore, but by 7:30 at night, I’m completely drained.
8. February 2012 at 3:09 pm
Denise, you need to see a doctor who know how to diagnose Lyme correctly and treat it adequately if you have it. I’m sending NY Lyme info so you can find one. You could’ve gotten Lyme from a spider bite or from a tick in your yard or from your dog. Thanks for asking.
6. February 2012 at 1:15 pm
Hello,
I was recently diagnosed with Lyme. I went to a ENT for ringing in my left ear. Took a hearing test and I don’t have hearing loss. She ran a lot of blood work and all came back good except of Lyme. I had a high positive result, 7/10 bands. I had a brain MRI on Thursday of last week still awaiting results. My records were reviewed by Infectious Disease doc and was told that it is Nero Lyme and pending MRI results to go see a neurologist. I am looking for a LLMD near Albany , NY. I know many people have a lot of symptoms and a negative test results. I have a positive test. Hindsight I have always had symptoms and never felt great. Just something that I have always dealt with. Just would like some answers.
Thanks
7. February 2012 at 11:00 am
Congrats on your Lyme diagnosis, Michelle. NY Lyme info is being sent ASAP so you can find someone who knows how to treat it adequately. Thanks for asking.
4. February 2012 at 8:41 am
hello, i’m looking for a doctor in the State College Area, (anywhere in the Northeast would do).
I have all the signs, i had a brain MRI last November for vertigo, and white spots showed up. At the same time, my neck froze, and was somewhat immobilized, and an additional MRI showed arthritis and bulging discs, and a degenerative spine. Earlier last summer i had arthritis scraped from my right shoulder. Soon afterwards half my face went numb, and my left hip began to ache, so much so, that it wakes me at night. Now my knees have joined in. I did have brutal headaches last summer, sore feet, and fatigue.
I’ve had two tests, both negative. (the ELISA test)
i might have had lymes for a long time, i remember what looked like a spider bite last spring on my face and a rash around one eye, but, i’ve no real idea when and where i could have been infected. My dog was infected about six years ago, we live in a Lymes heavy area, i would really appreciate any direction or help you can offer.
Thank you
helen
5. February 2012 at 12:40 pm
I’m sending you PA Lyme info, Helen. Please do see a doctor who knows how to diagnose Lyme correctly and treat it adequately. You’ve probably read that the CDC tests are famously unreliable, reporting a lot of false negatives. Thanks for asking.
31. January 2012 at 4:09 pm
My daughter was just diagnosed with Lyme disease. We are trying to figure out when it started b/c she never saw the rash. She is a dancer and 2 years ago she believes she injured her low back dancing but xrays, mris and ct scans showed nothing wrong. She went to orthos, and her internest all said she just needs to work on her core with exercise. But the exercise didn’t help her back either. 4 months ago she started having pain in her hips, shoulders and neck and finally took a blood test and found out she tested positive for Lyme disease. Could it have started 2 years ago or do you think it started 4 months ago with the joint pain? Thanks!
31. January 2012 at 5:41 pm
Your daughter’s Lyme could have started 2 years ago, Dawn. Lyme has a funny way of coming and going, lying dormant and popping out again. Is she seeing a Lyme-literate physician? Most regular doctors don’t know how to treat Lyme adequately. Plus most people with Lyme have one or more co-infections – Babesia, Bartonella, Ehrlichia, and Anaplasmosis. If you tell me in what city and state you live in, I can send you info on how to find a Lyme specialist. Glad you asked.
31. January 2012 at 2:49 am
Hey,I have had this since 1992,had every symtom,discribed,I feel like I got the flue,bad flue get it for 6 months,get better for 6,next time good for 1 year,get it back 12 months,I am tired of it coming back,last time good 9months,gotit back,it lasted 18 months,just got over it 2days ago,just when you think you can’t bear it any more,it goes away,been to lots of docs,tested in 92 came back neg.Never thought what it was,till I read about it on Rense,I’ll bet my life I got it,doctors say you want majic pill.They laugh,nothing wrong with me,but I know what I got. HELP
31. January 2012 at 12:06 pm
Mark, tell me in what city and state you live and I’ll send you info on how to find a Lyme specialist. You don’t want to continue this way if you have Lyme. You’ll eventually end up totally disabled. Thanks for visiting.
26. January 2012 at 12:57 pm
I dont know if you can help me or not. Doctors dont know whats wrong with me,tell me not to worry about it. Its hard not to worry when you have constant ringing in both ears for eight years,then foot pain comes on and ibs and now im getting tingling and numbness in my face and chin.I have had tests they all come out ok. I think it could be lyme but my doctor says no. I sure would like to find a doctor who could tell me if i had lyme or not. If you can help i live in detroit mi.
26. January 2012 at 3:18 pm
John, you need another opinion, by someone who knows how to diagnose Lyme correctly and treat it adequately if you have it. I’m sending MI Lyme info. Thanks for asking.
5. February 2012 at 8:32 pm
my husband had a tick bite maybe 20 years ago-he has always been in excellent health — the bite area healed and he didn’t think more about it until he heard a documentary on TV–then got to thinking about the health problems he has had off and on and how as he gets older things are really going SOUTH–He does have and has had through the years symptoms but MD.s have always just blew them off or treated the symptom–I would really like to get him to a Dr. that could tell us one way or the other what is the problem and if it is or is not lime infection–We live in Michigan and could go wherever in the state there is a really
good doctor– Thank you, Bonnie
7. February 2012 at 11:15 am
I’m sending you MI Lyme info shortly. Bonnie. Thanks for asking.
22. January 2012 at 2:20 pm
Hi there,
Wow, reading these posts and comments is like looking in the mirror. I have been nattling with numberous maladies for a few years now, and I am only 31! Most recently, I was diagnosed with TMJ but have seen only temporary relief from my symptoms with treatment. I suffer from one-sided headaches, blurry vision in my right eye, right ear pain and pressure, randomly swelling joints in my fingers and toes, bad knees, stiff neck, a swollen feeling in my neck and head, and swollen lymph nodes in my neck. I am definitely getting depressed and anxious because I feel like I am progressively getting worse and my doctors don’t seem to care! I am starting to think I could definitely have Lyme’s Disease. Could you please provide me with lyme specialist info for Missouri if you have it? I really appreciate it!
22. January 2012 at 2:35 pm
MO Lyme info coming up shortly, Sarah. Thanks for your comments.
19. January 2012 at 10:08 am
Hi,
I am looking for a specialist in the Mpls, MN area. Thank you!
19. January 2012 at 12:36 pm
MN Lyme info coming up, Judy. Thanks for asking.
17. January 2012 at 1:06 pm
Hi Pam,
My son was bit by a tick in 2009 and I took him to his regular doctor because I had suspicion that he might get infected with the Lyme disease from the tick. He did not have a rash initially, which I know that there may not always be a rash to follow the bite. She told me not to worry and does not think he has Lyme disease and sent us off.
Three years later my son has been complaining of pain in his joints, especially his shoulder and knees, he has had some rashes off and on that look like flea bites and has had strange symptoms in his head he cannot explain.
I made an appointment with the same doctor hoping she will order blood tests, but after reading some of the blogs I realize the tests are not always accurate. Can you refer me to a Lyme specialist in my area? I live in Hollister, CA, near the South Bay Area. Thank you so much for your help!
17. January 2012 at 7:38 pm
CA Lyme info is being sent shortly, Rebecca. Thanks for asking.
8. January 2012 at 9:05 pm
I was diagnosed with Lyme last summer after feeling like I was dying, and finding the target rash on me growing every day. The doc at the ER tested me and gave me antibiotics to take for a month. I am now feeling some of the same symptoms on and off for the past few weeks. Can it come back like that if I caught quickly? Or is it possible to have a co-infection? I was under the impression that if you caught it while the rash was there, then it was probably pretty recent. I live in MA and I dont know of a Lyme-specific doctor around here. Any advice would be greatly appreciated. Thank you
8. January 2012 at 9:21 pm
Brenda, unfortunately a month of antibiotics is usually not enough to get rid of Lyme. And yes, you may also have one or more co-infections. I’m sending you MA Lyme info so you can find a Lyme specialist. Thanks for asking.
31. December 2011 at 8:26 am
Pam, I live in eastern Pa. My father-in law who is my neighbor and my neighbor across the street have Lyme disease as do both of my dogs. Yes, I get concerned every time I pull a tick off myself and my husband. I’d appreciate any information for Pa. and specialist. I live 30 miles from State College, Pa.
Thank you Sandy
31. December 2011 at 8:55 am
PA Lyme info is being sent ASAP, Sandy. Thanks for asking.
1. January 2012 at 1:24 pm
Hi – I was wondering if you could help me out. I live in central NJ and at the end of Nov I started with these really bad headaches (maninly in my temple area). I also had a few red / dry patches on my stomach and arms. I went to the dr who tested me for lymes. My test came back negative. She put me on a 10 day cycle of amoxicllian “just incase it was a sinus infection” After 4 days I started to feel better. For a week now I have had a low grade temp and my headaches have returned. I also have a few more red patches. A few other symptoms have been a tight jaw, tingling on my face, and heart palpatations. Could this be lymes even with a negative blood test? I’m going to go back to the dr this week. Can you send me info for Lyme Dr’s in NJ. Thanks, Suzanne
1. January 2012 at 4:59 pm
Suzanne, the Lyme tests most regular doctors use are famous for returning false negatives. NJ Lyme info is coming your way so you can find a specialist who knows how to diagnose Lyme correctly and treat it adequately. Thanks for asking.
26. January 2012 at 1:17 pm
For Sandy in PA: I have a name in PA who was highly recommended by many over the years, who is now, no longer recommended by several, so maybe check with me off list? “yodels all day at gmail .com” use that as one word, changing the word “at”.
I can also give you one PA name some people I know use.
28. December 2011 at 8:41 am
Hello Pam-
Will you please send info about a LLMD in two different regions- Omaha, Nebraska and Gaithersburg, Maryland (suburb of DC).
We lived in Albany, NY for several years. My daughter is in college in Nebraska and I live near DC. We both have suspicious symptoms.Thank you!
28. December 2011 at 9:55 am
MD and NE info coming up, Kathleen. Thanks for asking.
20. December 2011 at 8:18 pm
I was diagnosed the end October of this year with Lyme Disease, after going through many different types of blood work since March of this year. I am now on my second month of oral antibiotics. In March I noticed being tired all the time, alot of pain in my hands, arms, knees, and feet. I felt like pins and needles in my hands, and stabbing pain in my legs and feet, and back pain. I had constant migraines. It was horrible. After being on the antibiotics for a month, I was still having severe pain in my feet and legs and some in my lower back and hips. I am only being treated by my family physician. The Doctors say Lymes is not very common in the area I live in, western New York area. The pain I have in my feet and legs after working all day is almost unbearable. I have children to take care of at home, and would like to know if there is any Doctors that are not extremely far away from me that may be able to help.
20. December 2011 at 10:31 pm
I get requests for Lyme info from folks in Western NY all the time, Angela. Lyme is a very complex disease better treated by someone who knows what they’re doing. For example, have you been tested for the tick-borne co-infections that often come with Lyme – Babesia, Bartonella, Ehrlichia, and Anaplasmosis? Most people with Lyme have at least one of them. Your foot pain could be Bartonella. It has different treatment from Lyme.
I’m sending you NY Lyme info so you can find a Lyme specialist to get another opinion. Thanks for asking.
20. December 2011 at 12:53 am
Hi. I could use some info on a specialist in Seattle. I’ve long theorized that I could have Lyme, but just feel like a hypochondriac. I complain a lot about joint pain especially in my knee, weakness, weird nervyness in my leg, have ADHD symptoms (and diagnosed), very poor memory, it’s uncomfortable to walk, run, or excercise. I feel like I’ve been in a bad car accident, though the only definitive injury I’ve ever had is a sprained ankle which was sprained several times. I’ve basically stopped enjoying leading an active lifestyle and I’m only 35. I’ve gone to physical therapists, chiropractor, doctors, therapists, nothing really gets resolved.
I’m probably just lazy with working out. But… as I’m concerned about my health I would like to rule this out. My most recent physical exam had the doctor conclude “you are healthy”, see you in a few years. He didn’t seem to be concerned with these ailments or hear me.
I do remember noticing a deer tick attached to my skin nearly 15-20 years ago, and I have 3 different bald patches on my body (2 of which are in that area). Anyway, who knows, but I’d like to rule this out to get on a different excercise plan.
20. December 2011 at 9:45 pm
WA Lyme info coming up, Brad. Do get an opinion from a Lyme specialist. 35 is too young to have all the complaints you list. Thanks for asking.