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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14. December 2011 at 11:36 pm
Hello, I have lyme disease symptoms. I have had these symptoms for over one year now. I tested negative on the Western Blot, but positive on the 41 KD band of the test, which I hear is a very important band. I live in West Palm Beach, FL and I am looking for help ASAP. Thank you. I have a one year old daughter.
15. December 2011 at 12:26 pm
Ray, so sorry you’ve been sick since your daughter was born. Bummers! FL Lyme info is on its way so you can find a Lyme specialist. Thanks for asking.
12. December 2011 at 9:02 pm
Hello Pam
I need a good lyme literate doctor in Austin or Dallas or Houston Tx area. Please can you send me information where I can find one. I will travel. I was on treatment but stopped and now I am suffering big time.
Thanks so much!
Lana
13. December 2011 at 2:24 pm
TX Lyme inf is being sent shortly, Lana. Thanks for asking.
9. December 2011 at 12:33 pm
Hi Pam, I was diagnosed with Fibromylagia almost a year ago today. I went to Mayo Clinic of Jacksonville, FL after ongoing severe symptoms. My back pain got a lot worse, my legs and my whole body have been getting very painful over time and now it is pretty much full blown. They theorize my fibro came from years of back pain, starting at age 21. Though, this pain is happening rapidly. My whole body feels incredibly weak and i am now waking up with pain in my ribs and my upper back and my neck is getting worse. The neck started a few years ago, that i attributed to stress. I also have a plethora of digestive issues. The soreness and pain is very weird and always switches regions on my body or i feel it all at once on any given day. I also get ongoing migraine headaches that vary in degree. They gave me pamphlet on Fibro and said “sorry, but at least it’s not Lupus or some other immune disease” I have a huge outstanding bill from them, as they were out of network, but i wanted the best care and i was told there was no better in my area. They did a full blood count, but i’m not sure they did the specific types everyone is talking about. Even so, i keep hearing it’s almost always negative even when you have it? I can’t believe how bad my body has gotten. The worst of everything is my foot pain, but i am at the point that now my whole body is inflamed. I don’t know if it’s lymes, but all of the complaints have really mirrored mine. I didn’t even cover the mental changes. I am VERY forgetful. I am 32, but this doesn’t feel like normal forgetfulness. I haven’t found a tick on me, but i have found a tick in my shower. That was about 6 months or so ago. In short, i heard Fibro can be a sign of Lymes, do you have a list of doctors in Jacksonville, FL i can see?
9. December 2011 at 2:28 pm
Abrie, the symptoms you describe are typical for Lyme, especially pain coming and going and moving around. Foot pain could be Bartonella, a common Lyme co-infection. Sorry to say, the Mayo Clinic in FL doesn’t have a good track record at identifying Lyme (I live in Orlando and know many Lyme patients in the state who also filtered through Mayo first to the tune of many thousands of dollars). While no Lyme test is 100% accurate, some are more reliable than others. Lyme-literate doctors will treat mainly on clinical symptoms anyway.
I’m sending you FL Lyme info so you can find someone who knows how to diagnose Lyme (and co-infections) properly and treat it adequately. Glad you asked.
10. December 2011 at 12:25 pm
Would you please send me a list of doctors who are lyme disease specialists in the Seattle area?
10. December 2011 at 1:55 pm
WA Lyme info is on its way, Judith. Thanks for asking.
5. December 2011 at 9:30 pm
Hi Pam I am an 18 year old girl from the New England area and last year at this time I was diagnosed with lyme disease but my PCP told me we caught it early.. I also was dealing with mono at the same time as my lyme. I was first put on 3 weeks of doxycycline but after about a week I started getting allergic reactions so they proceeded to put me on amoxicillin but I also had reactions to that. I took a week of the doxycycline and about 2 weeks of amoxicillin and I went back to get more blood work to see if it was gone. A nurse said we nipped it in the butt but for some reason I don’t believe it. After all of that I had FREQUENT infections with my throat and last month I recieved a tonsillectomy but they said the mono bacteria is what caused these illnesses. Aside from that I’ve had plenty problems with my digestive tract, pains in my joints and back, headaches, ANXIETY (huge problem) ever since I got lyme. Now that i’m 18 and can make my own doctors appointments I want to see a lyme specialist to make sure I really did get rid of it because my parents believe i’m a bit of a hypochondriac but this disease from my research presents psych problems too. Can you send me a lyme specialist in the NH, MA area?
6. December 2011 at 3:13 pm
First, Lindsey, you aren’t a hypochondriac. All the symptoms you list are common with Lyme. The “allergic reaction” you had with Doxycycline and Amoxicillin was more likely a Herxheimer reaction, common with Lyme. The drugs were working to kill the Lyme. The amount of both you took is rarely enough to “nip Lyme in the butt.” Plus is doesn’t sound like you were tested for the common co-infections that come with Lyme – Babesia, Bartonella, Ehrlichia, and Anaplasmosis. And most Lyme patients have activated Epstein-Barr virus (mono). NH/MA info is being sent shortly. Yea for being 18 and taking care of your own health! Thanks for asking.
5. December 2011 at 2:52 pm
Please help me find a LLMD in the Scranton/Wilkes-Barre PA area.
Thank you!
5. December 2011 at 3:49 pm
NE PA info coming up, Kathy. Thanks for asking.
2. December 2011 at 2:14 pm
Pam-
Thank you on behalf of all of us who have encountered this challenging disease. Do you have any specialists near St. Paul or Minneapolis, MN. It is often times frustrating not having a clear path to recovery. Do you have any literature you recommend in dealing with this frustrating bug? Can dieting differently help?
Thank you. Happy Holidays.
2. December 2011 at 4:26 pm
Robert, sorry to say there is no clear path to recovering from Lyme. Every person has a different combination of symptoms, a different physiology, different co-infections, and different reactions to treatment. A special diet can help some (there is a book called The Lyme Diet). One of the most important factors is avoiding wheat gluten. I’m sending you MN Lyme info so you can find an LLMD. Thanks for asking.
1. December 2011 at 12:41 pm
My daughter has been very sick for about 7 years now, with one thing or another constantly. First she was diagnosed with psychiatric problems along with other diseases and was placed on psych meds. She improves for awhile and then other medical problems come up, various infections, muscle aches and pains, arthritis, etc. She lives in Florida and most of the doctors there just simply don’t take her seriously because of her psych problems. I found your website by accident and started reading some of the symptoms and they fit my daughter perfectly! Right now she has one infection after another and has a temp daily and has been really ill since 15th of October and after numerous doctor visits and ER visits, they still do not know what is wrong. Please send me Lyme Disease info for Florida. Thank you so much!
Lois
2. December 2011 at 3:27 pm
I”m sending you FL Lyme info, Lois. There are knowledgeable LLMDs in the state. Thanks for asking.
1. December 2011 at 7:54 am
Can you please send me Lyme Disease specialists in the Lake Norman/Charlotte, NC area?
1. December 2011 at 3:27 pm
NC Lyme info is on its way, Julie. Thanks for asking.
1. December 2011 at 2:01 am
Pam, my type 1 diabetic 22 yr old son has all symptoms of complex Lyme. He is in hospital in Mission Viejo CA being tested tonight. We just found out yesterday while at Internist (boys seem to forget!) that he was tick bitten twice in the fall of 2009 while living in rural area outside of Toronto CA.
Can you send LLMD info for Orange County CA, and San Diego CA, as well as Salt Lake City Ut area in case he comes home for treatment?
Also any info on Lyme interacting or impacts on Type 1 Diabetics would be appreciated.
thanks
Ron
1. December 2011 at 3:24 pm
Ron, if your son got Lyme from a bite two years ago, he has chronic Lyme, which can impact all body systems, including the pancreas, liver, thyroid, kidneys, hormones, etc. I’m sending you CA and UT Lyme info. His chances of treatment are better in CA. Thanks for asking.
30. November 2011 at 9:00 pm
Could I please receive some info for Lyme disease and also where I could find a doctor in South West Virginia. I have many symptoms of Lyme and I want to get tested and was not sure what to do or who to contact.
30. November 2011 at 9:22 pm
John, info for Lyme disease is on this website. Check out Lyme Resources for guidelines from ILADS. The test you’re looking for is by IGeneX. Most regular doctors don’t know to use it. Even if they did, they wouldn’t know how to treat Lyme adequately. I’m sending Southwest Virgiina info since I have nothing for South West Virginia. Thanks for asking.
22. November 2011 at 4:28 pm
Hello Pam,
Is there any Lyme dR.’s near Abita Springs, LA. 70420, i have not been tested or anything.,thank you
22. November 2011 at 7:17 pm
AJB, I’m sending LA Lyme info so you can find a Lyme doctor to test you appropriately. Thanks for asking.
20. November 2011 at 5:30 pm
Pam, Can you send me a name of a LLMD in the Minneapolis, MN area. Thanks
21. November 2011 at 2:57 pm
MN Lyme info is on its way, Peter. Thanks for asking.
19. November 2011 at 9:05 am
Hi Pam,
No bite site for me…just pain in both hips to the point of not being able to walk when I first stand up, shoulder joint pain, ankle joint pain, foot cramping…and I’m an avid gardener and outdoor person.
Could you direct me to a Lyme specialist near Springfield, MA?
Thanks,
Jamie
20. November 2011 at 10:35 am
MA Lyme info is on its way,Jamie. Thanks for asking.
17. November 2011 at 2:36 pm
I am trying to find a LLMD in the Columbia South Carolina area and am having a very hard time… I have neurological Lyme Disease that has caused Deep White Brain Matter Disease. I have been trying to find a local support group to no avail.
Any help would be greatly received Thank You
17. November 2011 at 5:12 pm
Shelley, you’ll probably have to travel to get adequate help. I’m sending you SC, FL & DC info. As for support, online Lyme groups are very helpful. One good one is at MDJunction. Facebook also has Lyme groups you can join. Thanks for asking.
15. November 2011 at 11:48 pm
Can you suggest any integrative LLMD here in southern CT? thanks.
16. November 2011 at 10:00 am
CT Lyme info is on its way, Mike. Thanks for asking.
14. November 2011 at 10:41 am
Hi Pam – I was just diagnosed with Erlichiosis and Bartonella, can you send me LLMD info for Northern NJ, Blairstown area. Thanks!
14. November 2011 at 12:54 pm
North Jersey Lyme info is on its way. Thanks for asking, Antoinette.
10. November 2011 at 9:27 pm
I have been treated for lyme disease on and off for about 3 years. My primary care doctor thinks I am getting reinfected and treats me with doxcycline. This time during blood work he found a marker for rheumatoid arthritis and sent me to a rhumatoid doctor. he prescribed 5mg of prednisone and after taking it for 8 days (starting with 4 per day to now 2 daily) I have developed the worse cramps in my legs, hand and neck. He said to discontinue and said my blood work suggests a parisite babesia. He is refering me to an infectious disease doctor. The prednisone took away my joint pain, I thought it was a miracle medicine, but I can’t take the cramps. I guess my question is how serious is this? I am a very active person and have a high tolerance for pain. So do I just deal with it?
11. November 2011 at 10:47 am
Judy – If you have Lyme and Babesia (and who knows what else), you really need to be treated by a Lyme specialist. Most PCPs, and many rheumatologists and neurologists among others, know little or nothing about the complexities of Lyme and co-infections. For example steroids (including Prednisone), while they may reduce pain, make Lyme worse. “Just deal with it” is the last thing you want to do. Lyme Disease is nothing to treat symptom by symptom; people have died from it. If you tell me where you live, I’ll send you info on how to find a Lyme doctor near you. Very glad you asked. Please take what I say seriously.
11. November 2011 at 2:16 pm
I live in Schenectady, Ny 12306 Thank you for your reply. I am trying to be my own advocate as all else seem to take this too lightly. so I have been searching for someone who knows about Lyme and how to treat it.
11. November 2011 at 2:20 pm
Being your own advocate is the way to go, Judy. Only those of us who have Lyme, etc. understand. Most of us have had to learn how to be our own advocates too. NY Lyme info is being sent shortly. Let us know what you find out.
10. November 2011 at 3:11 pm
Hi I was diagnosed with Lyme disease by blood test given, 3 months of doxycycline and then told I was done unless I would like him to treat my fibromyalgia lol (I do not have this). I am still having pains and my stomach is awfully distended. I am looking for an LLMD in Maryland, preferably around Frederick. If anyone is able to help that would be great! Thanks in advance.
10. November 2011 at 3:31 pm
I’m sending you Maryland Lyme info, Dominique. You don’t say if you were tested and treated for any Lyme co-infections. If not, check into to with a Lyme specialist. Thanks for asking.
6. November 2011 at 10:19 pm
hi Pam
Great job in keeping people informed. r u going to Jacksonville this weekend?
Regards
Dr K
7. November 2011 at 7:14 am
Thanks, Dr. K. Lots of folks with Lyme who need help (as you know). Not sure yet if I’lll be at the NEFLA Lyme Association Lyme Summit in Jacksonville this weekend. Best wishes for a warm reception of your presentation. Glad you stopped by. Pam
2. November 2011 at 2:26 am
i am so damn frustrated. I am very sick and have been for a number of years with unknown problems. Well nothing new to others on this site im sure. I went to the doctor I thought just might help me and spent thousands of dollars out of pocket. Only for him to tell me sorry. He does not take on this kind of thing any more and will not draw my blood . i have had no luck at all in finding another doctor/ They all seem to be scared or just a bunch of butt holes/ i feel so damn lost and if God was not my Lord and savior i would just jump off a cliff or maybe spend my last dime and scuba dive to a peaceful death/ i wish people would listen about this terrible disease and help to make the healthcare do what they should to make it possible to get help.
2. November 2011 at 12:27 pm
I hear you and agree, Tammi. This whole Lyme thing is a horrible travesty. I’d be glad to help you find a doctor who does know how to treat Lyme if you tell me where you live. You can get better from Lyme and any associated diseases you might have. It’s not a quick, easy trip, but it can (and does) happen. Thanks for commenting.
2. November 2011 at 4:30 pm
Por favor necesito ayuda en espanol, vivo en miami,aqui los medicos niegan lyme, llevo dos anos sufriendo el aumento de los sintomas, tengo 68 anos.
saludos y bendiciones.
2. November 2011 at 5:01 pm
Zonia, Le envío información para Florida así que puede encontrar a un médico de Lyme en el área de Miami. Gracias por preguntar.
31. October 2011 at 9:16 pm
Hi i am in desperate need of the name of an LLMD in New York City one that has a conservative western and intergrative medical approach to this horrible illness.Someone who is very knowledgeable on the cutting edge of this lyme epedemic.
1. November 2011 at 1:23 pm
You’ve got lots of NYC choices, Paul. I’m sending info on how to find them. Thanks for asking.
21. October 2011 at 11:45 am
Hello, I’m looking for a lyme literate doc in north Alabama . Thanks
21. October 2011 at 2:17 pm
Alabama Lyme info is being sent shortly, Bob. Thanks for asking.
15. October 2011 at 12:38 pm
Can you send me a name of. Lyme Disease doctor in the Frederick or Baltimore area?
15. October 2011 at 2:57 pm
Maryland Lyme info is on its way, Sharon. Thanks for asking.
17. October 2011 at 8:48 pm
Pam, Can you please send me information on Maryland, DC or Virginia LLMDs? Thanks!
18. October 2011 at 8:01 am
Maryland Lyme info is on its way, Marylandmom. Thanks for asking.
29. November 2011 at 4:10 pm
Do you have a good doctor in St. Augustine/Jacksonville, FL??????
29. November 2011 at 5:36 pm
FL Lyme info coming up, Dana. Thanks for asking.
19. October 2011 at 8:45 pm
I use [doctor's name deleted]. His website is [deleted]. I like him because he uses natural treatments. I have Lyme, Bartonella, Epstein Barr & a host of other problems. I’ve been going to him for a year. My health has improved really improved. My journey has been a very long one. Gives me hope there’s a light at the end of tunnel.
20. October 2011 at 10:49 am
Jane, thanks for providing your recommendation. Unfortunately it’s an online convention not to publish Lyme doctors’ names to protect them from being brought up before their state medical board for the “unorthodox” treatment of Lyme. It has happened. Some doctors have been heavily fined. Others have lost their state medical licenses.
I’ve forward your recommendation to Sharon and added your doctor’s information in emails I send to site visitors who request info for Maryland. Thanks so much for your generosity.
30. October 2011 at 3:04 pm
I am suspecting that I have Lymes Disease and am awaiting blood work from the ER for Lymes Disease. The more I read and learn the more I realize that 10 days of antibiotics probably isn’t going to cure me and just because the test comes back negative it doesn’t necessarily mean I don’t have Lymes Disease. I am interested in finding a doctor in MD / DC / VA that takes a more natural approach to healing the body. I live on the Eastern Shore. Thanks you for any help you might be able to give me. I truly appreciate it.
31. October 2011 at 10:33 am
Rebecca, I’m sending you MD/VA Lyme info. Glad you’ve been learning the true story about Lyme diagnosis and treatment. Thanks for asking.
12. October 2011 at 5:36 pm
Jo, you’re sister is lucky to have your support. I don’t have any from either of my brothers and my mom is lost in the world of Alzheimers, so I can’t talk to her about it. I sometimes wonder if she could have it.
Doug, I hope you continue to improve.
7. October 2011 at 10:40 am
My sister had symptoms and was tested. However, some medications can interfere with the test results. In her case, she was taking steriods which her doctor prescribed due to complaints of pain. Of course, the pain was from Lyme. She progressively became worse and went to many doctors.
Choose doctors carefully. If you go to a neurologist, he will find a neurological problem. If you go to an cardiologist, he will find a heart problem. Specialists are knowledgeable in their areas of expertise but not necessarily in all aspects of medicine.
Finally, after seven years and much expense, my sister is on her way to health. Self-education about this disease is important. Do not count on insurance companies. Remember that insurance companies are for-profit entities. Insurance companis do not make money when they pay for services. . .
Good luck to everyone!
Jo M.
7. October 2011 at 5:47 pm
Amen, Jo. Thanks!