TOUCHED BY LYME: “Why so long to diagnose?” Why, indeed?
SELF magazine recently wrote about “Real Housewife” Yolanda Hadid (formerly Foster) and her upcoming book Believe Me: My Battle with the Invisible Disability of Lyme Disease.
The article says Hadid was sick for a year before getting diagnosed with Lyme. It notes that it also took a year for singer Avril Lavigne to receive a Lyme diagnosis.
The magazine then asks a reasonable question: why does it take so long for people to get diagnosed with Lyme disease? Then it answers that question, unreasonably I feel, by saying “Luckily, this long journey to a diagnosis is atypical.”
The reporter arrived at that conclusion after interviewing three IDSA doctors, who all give standard, IDSA-approved responses:
- “It isn’t common for a Lyme disease diagnosis to take a year.”
- “Usually it’s picked up in the acute, early phase.”
- It’s “extreme” to take up to a year to get a diagnosis.
Unfortunately, that’s not the world that the rest of us live in, is it?
According to MyLymeData, which so far has surveyed 4700 patients with chronic Lyme disease, only 1/3 of respondents were diagnosed within the first year of their illness. For most of them, diagnosis took three years or longer.
(Three years or longer of pain and misery, either with no treatment at all or else treatment aimed at whatever they were misdiagnosed with.)
Sticking to the IDSA playbook, one of the doctors explains that treatment usually involves antibiotics for 10 to 14 days if you’re in the early stage of Lyme disease and up to four weeks of antibiotics if your Lyme disease is more advanced.
And after that, TA-DA, you’re cured!
“The overwhelming majority have no issues after the acute illness is treated,” the ID doc says.
Again, that’s not the world we live in, is it?
For the record, SELF magazine: there are two sides of the question when it comes to Lyme disease.
One side, the IDSA, says Lyme is easily diagnosed and then treated with a few short weeks of antibiotics. They deny treatment to Lyme patients who don’t fit their narrow diagnostic criteria, and they deny the existence of chronic Lyme. Their good friends—the CDC and the insurance industry–stand on that side of the divide with them.
However, if the IDSA’s version of reality were true, there’d be no need for the other side, which is getting more crowded every day.
Here on the other side, you’ll find legions of people who are very sick with Lyme. After little or no treatment, they have been kicked to the curb by the medical establishment, no matter how much they are suffering.
Here on the other side, you’ll also find members of the International Lyme and Associated Diseases Society, the ILADS physicians who are willing to help chronic Lyme patients when nobody else will. Along with many scientists whose research contradicts the IDSA’s one-size-fits-nobody view of Lyme disease.
Also here on the other side, you’ll find thousands of dedicated advocates–Lyme patients themselves, along with friends and family of those with Lyme–toiling to bring some measure of justice to this acutely unfair situation.
If it’s celebrities you’re looking for, there are plenty of them on this side as well, in addition to Hadid and Lavigne. Just this week, it was revealed that singer/songwriter Kris Kristofferson doesn’t have Alzheimer’s, as many had feared, but in fact has Lyme disease.
Also standing on this side: Ally Hilfiger. Darryl Hall. Debbie Gibson. Jesse Colin Young. Punk rocker Kathleen Hanna. Baseball Hall of Famer Tom Seaver. WNBA basketball player Elena Delle Donne. Olympic gold medalist Christi Rampone. Bestselling author Amy Tan. The list goes on.
A doctor quoted in the article says the average person “shouldn’t stress” about contracting Lyme disease. Because it’s unlikely to happen, and if it does, it’s “easily treatable.”
Alas, that’s not the world the rest of us live in.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
I am dealing with it too. Three different times of ticks on body. 1st time undiscovered for three months. Treated one month,. # 2 and 3. Seen, removed, treated two wks. Onset during late winter after last time of swollen very painful legs around knees. Painful lumps. Treating self with turmeric, olive leaf, grape seed, C, D, pineapple, lemons, vinegar, rubs of tea tree oil, other oils, coconut oil, some relief with exaserbations from time to time. Keep on going no matter what. Very scarey heart pains, neck pain, leg, foot and hands……shooting pains. No help. No recognition of chronic Lyme by internist. Take ibuprofen only advice.
Have we written a letter to the editor of SELF contesting their conclusions?
I sent them this blog. DKL.
I had my first acute phase of Lyme in the late 1950s or early 1960s. The doctor just gave me pain meds and that was it. When I went back they just looked at my neck which had horrible pain, and my legs which had horrible pain and weren’t working right, and told me they could see nothing wrong.
Over the years I had several other experiences with new attacks, and symptoms that flared and retreated. I had doctors repeatedly tell me that they could find nothing wrong with me and suggested that it was psychosomatic. In the late 1980s, a psychologist that I was seeing told me that she believed that I was very sick and needed to find help. After seeing upwards of 40-50 different doctors, in 1990 I found a doctor that helped a little, but it took several years before he tested me for Lyme. The test came back negative, but for some reason he kept running different tests, and repeating the same tests for Lyme, all negative. I eventually started seeing another doctor closer to home and she recommended that I be tested for Lyme, I told her that I had had several tests for Lyme. She encouraged me to do it again. Subsequently, she had several tests for Lyme done. And eventually, the I Genex test came back positive. I have many varied symptoms, a lot of neurological effects and pain. My heart is affected by the damage in my cervical spine. I am not able to leave my home much, and do not have the quality of life that I would like.
I think that the propaganda that seems to be so prevalent in the mass media today is criminal.
I encourage you to participate in the MyLymeData project. It collects this kind of info from individuals with Lyme. More info: https://www.lymedisease.org/mylymedata/
DKL
Hi DKL,
I have, and am, participating int the project. Some of the choices of answers I could select didn’t cover my history, so I’m pleased for these forums to allow me to give more and clearer information. So, I hope that the project moderators are paying attention to them.
Jane Ann
Alas, “big data” requires what are called “forced choices” in the survey. We do include *other* with a text box as a choice–so some info can be filled in.
Wish we could fix the “forced choices” thing. I had treatment 7 years, did very well. Now I can’t get treatment, and I am again isolated, getting sicker, family friends make fun as well as doctors. If this is called “living” I wish I could resign. It is such a lonely, painful life with no relief.
GMD, why can’t you get treatment ? anyone can get treatment.
Actually, it’s not true that anyone can get treatment. If somebody’s symptoms don’t fit within the very narrowly defined IDSA Lyme guidelines, most doctors won’t treat–and most insurance won’t pay. If folks with Lyme can get to one of the relatively few doctors willing to treat them, they usually have to pay out of pocket. It’s a travesty–and it must stop. DKL.
Yes, it’s a travesty, so why do it ? Just bypass that whole system that you have been conned into thinking you have to participate in to get treatment. You don’t have to do it. Step up and just take care of it yourself and make decisions for yourself.
I have no doctor, no prescription, no insurance but still easily get treatment, it costs me 19 cents a day for doxycycline. Anyone can afford that, and anyone can do the same thing I have. Just go online and buy it, done. So, yes, anyone can get treatment.
Good Lord…..it took me from 1980 to end of 1989 for a diagnosis….and now, thirty six years later, daily, I struggle with the Chronic Lyme aftermath. So many issues, pain, sleep disorder….medications (benzo, antidepressant, tramadol addictive pain med, etc.) prescribed over the years that are impossible to totally wean off without God awful withdrawal/flu like symptoms…..where I’d rather die in bed than have to deal with the withdrawals. Yes, did the heavy doses of multiple abx, 34 bicillin shots (ouch), traditional Chinese meds, too many NSAIDS….now at age 69 learn NSAIDS can cause heart disease (already have two leaky valves), also diagnosed with GERD, gastritis, large hiatal hernia, thrombophillia, MTHFR 677T gene mutation, multiple spinal disk herniations with degenerative spine disease…..just found out I have advanced cervical radiculapathy….extreme pain from shoulder to fingertips with numb index finger (of course it’s right arm, the one I prefer to use). Diagnosed many years ago with Fibromyalgia (Lyme?) since I had all eighteen tender points afflicted. The worst disability I had during the 36 years was daily vertigo…..falling to right side hundreds of times a day, at my desk, trying to maintain a mid level pension plan administrator job. Once I had a dx of Lyme….two weeks on triple doses of amoxicillin along with probencid…the vertigo ceased. However, I do have relapses with vertigo attacks and extreme dizziness, to this day. I have seen both IDSA docs (Wormser?) and ILADS docs…..and only the Lyme Literate docs (ILADS) helped me show any improvement. Unfortunately my last ILADS doc discontinued accepting Medicare due to the many threats of taking his license away. At age 54 I ended up on LTD through my employer and subsequently SS Disability until turned age 66, SS switched me over to normal SS Retirement benefits. I never was able to afford Rocephin IV abx…..but, as I understand it, being I was not diagnosed for nine years, that treatment would most likely be in vain. I already suffered for one year with medication induced hepatitis and Serotonin Syndrome due to medical error, over prescribing serotonin uptake meds along with Tramadol (synthetic opiate). No intention this evening to write such an extensive Comment….but my fingers just kept typing. This is first time, ever, I’ve written about some of my Lyme journey….thank you if you read this far…..certainly a feeling of relief for me, getting it out in the open. So many family and friends have abandoned me…..guess it gets “old” for them to hear that I’m not “cured” yet. Well, there’s always tomorrow. God bless all my fella Lymies….it’s a tough uphill battle….I DO understand.
Mary, I am so glad if telling your story helps any. It is so worthwhile. When my last LLMD dropped my treatment, he did not tell me his license was in danger. I am pretty sure it was, but he chose to tell me I was crazy rather than say the obvious. He did that on the phone while munching on a sandwich. Cruel and evil. It is a cruel and evil world we live in. God bless, and I wish you the best. Losing my treatment made me lose my engineering job, working on the space station at NASA. Like all that hard work I did to get my education went down the drain. The isolation and pain is sometimes worse than the disease, which is so hard to endure all by itself. Again, glad if sharing helps any.
Dearest Mary – thank YOU so much for sharing your story – I am just starting my journey but am certain I have been LYme infected for over 20 years. I have been diagnosed with different ailments and chronic immunity issues and was finally tested for Lyme and it came back positive, which I guess is lucky for me so we can know what we are dealing with. I appreciate everyone sharing it helps me so much
I have been single for many years in fear of giving someone this illness. The late diagnosis is a huge deal. It took me a year even after the tick was found to be engorged. Beings it’s been found in saliva and passed to partners ALL doctors should know the correct diagnostics for lyme and ALL coinfections! This should be headline news in the World!!!!
Hello everyone i am so grateful i found you. Finally support. I am 49 years old and just got out of the hospital. For the 3rd time for chest pain i mean pain that will put u thru the roof. I was diagnosed with lyme in my twenties and treated for a month with antibiotics oral. Then i came up positive months later the doc said i got bit again well i thought that’s crazy. My father has kidney failure and i am his primary caretaker. It is so stressful. Lately i have been gettibg wrist pain ankle pain all with swelling trouble breathing, headaches fingers swelling and hurting and a terrible time remembering things. I was diagnosed with fibro three times. So i thought i had that for 20 years. I hurt everyday its a struggle and like someone else said no one gets it, not even family. If i got cancer they would get it then.Thank you for listening it feels good not to be alone.
Yolanda is writing a book–and the vultures are circling.
It takes over a year to get diagnosed because no MD wants a Lyme patient in their practice, acute, chronic or otherwise. So even though they know you likely have chronic Lyme disease, they refuse to test you, and even if you can force them to test you, the test either comes back negative, or is a “false positive”, and then you are dismissed or referred away. There’s really no point in arguing with a physician who has already decided they don’t want your case. So you have to often go through a lot of doctors before finding one that has a conscience, who might actually do their job properly. Its just too easy for them to label you a malingerer, a hypochondriac, depressed, etc. Of course there’s no scientific tests for any of those diagnoses either, but they are handed out like candy to Lyme patients, and others, nonetheless.
I am new to the Lyme world and I’m already pissed off. the same doctor who diagnosed me later told me I do not have Lymes but peripheral neuropathy. If I’d believed her who knows where I’d be. My attempts to explain to her that the immunosuppresant drugs I take for RA interfere with antibody production fell on deaf ears. Ultimately she tried to ban me from the entire neurology department. Thank God my cardiologist heard me and I finally got referred to infectious disease. For various reasons I cannot tolerate doxy and am going on ceftriaxone in the near future. I have had Lymes 14 months and most of my symptoms are neuro