My Story: Living with Lyme Disease

My Story: Living with Lyme Disease

I have Lyme disease, as well as Babesia and Bartonellosis, all infections transmitted via ticks.  I have been very ill for 6 years, and the pain is so unbearable and unpredictable that it doesn’t allow me to get out of bed when it’s at its worse.

The pain of Lyme disease is not confined to any specific body site, but instead can be migratory and generalized, of varying characteristics and intensity. Not only do many doctors refuse to acknowledge Lyme disease and learn about it, but they disregard my pain and question everything about me.

I feel I am seen as a person seeking drugs or making up things. I have been told that “it’s all in my head,” that I have a “conversion disorder” (a new term for the good old hysteria of women), and that I must have Munschausen syndrome (another demeaning psychiatric diagnosis).

Sally Jones

Sally Jones

I most likely contracted Lyme disease while jogging or hiking outdoors, saving feral cats at the University of California Davis, or working with animals.  I don’t recall a specific tick bite or rash, although I remember feeling ill, with body aches, fever, and back and neck pain for 3 days in 2002.

At the time, emergency room physicians told me it was likely only the flu and sent me home without any treatment or testing.  Since then, the onset of my symptoms has been insidious and gradual, resulting in my inability to complete my bachelor’s degree at UC Davis and having to return home to live with my parents.

Most Lyme disease patients don’t recall a tick bite or have the typical bite mark that physicians look for.  If they had diagnosed my Lyme disease earlier, I would have received treatment and the disease would not have progressed to the extent that it has.  Unfortunately, once the disease process becomes persistent or chronic, it affects many organs, including the nervous system.

My pain is mostly in my joints, back, neck, and head, but sometimes it feels as if my whole body is painful even to the slightest touch.  The joint pain can feel as if someone is pulling my muscles away from my joints.

Sometimes the pain is so intense, that I’m unable to even lift a fork to eat or walk without help.  My pain can be like an ache, a stabbing, a pressure, or an intense feeling of discomfort.  The pain definitely becomes worse on a cyclic manner, when I get fevers and worsening of other symptoms; this happens every 2-3 weeks and lasts about 3-5 days.

The pain associated with Lyme disease is highly variable, not only in location, but in intensity and type, and it varies from person to person.  The pain is migratory, meaning it changes in location, and is not isolated to any one place in the body.  The migratory nature of the pain makes it much more difficult for physicians to understand and believe.  It’s not like somebody with chronic low back pain or headaches.

I have tried most of the oral medications for pain, but have not been able to tolerate them.  I throw them all up within 10 minutes of taking them.  That is why they put me on Fentanyl patches.  The patches work well for me, but they don’t adhere well to my skin.  Because of the fevers and the excessive sweating from the Babesia infection, it is very difficult to have the patches adhere and they fall off easily.

We have used numerous dressings and tapes, as well as adhesives, to make them stay on, but sometimes nothing works. This makes it difficult to get adequate pain control and I go through more patches than other people.

Some doctors are adamant that I should get off the patches and take either methadone or Suboxone, without fully understanding my dilemma with nausea, vomiting and intolerance of oral medication.

It is difficult to find pain doctors that are understanding and interested in finding out about my infections. The fact that my pain is so variable makes it even more challenging.

I would like to not have to take all the medications, including the pain meds, but I cannot cope with the pain otherwise.  I want to get better, regain my life, and not have to rely on medicines. I am slowly getting better from my infections, but at this time I’m unable to stop pain medication.  The treatment of the infections causes the pain to get worse as the bacteria die off, so I need to continue with pain treatment until the infections are gone.

I have never taken recreational drugs, smoked or drank alcohol, except for the normal teenage experimentation. I know that my pain tolerance has increased with use of pain medication, and there will a difficult process of weaning off the medication, but I am eager to get there soon.  I am not afraid of the detoxification process, but I am very afraid of the pain.

I hope that physicians and pharmacists learn more about the difficulties of treating pain associated with Lyme disease and associated infections.  We are suffering, the pain is REAL, and we need to have access to proper pain management without feeling like we are criminals.

Physicians and pharmacists need to understand that chronic pain is just like any chronic disease, and medications are necessary to properly treat patients.  We have the right to be treated politely, nonjudgmentally, and kindly.  They need to stop grouping all people who take drugs as no-good, second class citizens.

Until they come up with better drugs to treat chronic and severe pain, we need to work together.  It’s not our fault that the medical field has not yet come up with more specific and better pain management.  It certainly is not okay to be told “it’s all in your head.”  They would not say that to a heart patient in need of cardiac meds, a diabetic needing insulin, or a cancer patient needing pain relief.

12_7.jpgSally Jones lives in Santa Rosa, California.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Sally Jones

There are 4 comments for this article
  1. Mike M at 9:44 pm

    You are talking about pharmacists needing to learn to treat, It is not their job to treat, they dispense the medicine that your doctor prescribes. I have chronic lyme and my wife is a pharmacist. Pharmacists can only teach you about the medication you are prescribed by your doctor. I feel your pain though, I have gone to Mayo clinic 6 times and have been tested by the ELISA test which came back negative every time. I kept getting all these “umbrella” diagnoses. They believed something was wrong but could not figure it out. Finally a small town doctor ran the western block. The county had informed me of the results before the doctor did. I have lost my job, about to lose my home, and fearing that it may tear my family apart real soon due to all the stress. Thanks to the insurance companies for not covering treatments. I am grateful for the treatment I am receiving but I think some of these LLMD’s are taking advantage, a little, of us patients who can not work and have to pay for these treatments.

  2. paul kinderman at 10:47 am

    I too live with lymes. I got it in 2000 and unfortunately got the required antibiotic several wks after being bitten by the deer tick.. 3 treatments over the next few months didn not eradicate it.. since then i have had nearly every body part above the waist show pain. The dog days of summer heat seem to reactivate the flu symthoms. Slowly tho it has been less a problem. Usually reappears in back pain. i take 3 grams of vit c, raw garlic, and eat rather natural in diet.
    im not a big fan of the health care system to cure it. alternative treatments seem best.

  3. marymcgowan at 6:19 pm

    It was lovely to read your piece and you summed up everything so nicely its exactly what I experience sometimes its painful to hold my mobile, and difficult to explain to people.i am stuck in bed until at least4oclock most days and take painkillers in huge amounts but still have to wait hours for relief.its bad enough suffering but not being believed makes it worse and drs dont get it or explain anything ive now concluded that they dont know how to deal with chronic painso try to dismiss it!well donefor articulating what we feel.

  4. NOTSONUTSO at 12:32 am

    Why are you planning to wean off pain medication?? I have severe abdominal neuropathy plus neuropathy in my hands, feet & back. I take gabopenten but have been prescribed percocet since 2000. It does not do much for the pain in feet, hands & back (I use lidocaine patches for top & bottom of feet). But it helps with abdominal & joint pain. I don’t see myself ever weaning off pain meds. I have never gotten a “buzz” from percocet. I’ve never used drugs or even drank alcohol or smoked cigarettes. Good luck to you!!!!