The Pain and Hassle of Lyme Disease

The Pain and Hassle of Lyme Disease

Editor’s Note: Amy Lessenger Jacobs is a friend who ran into a very painful adversary this summer – Lyme Disease. She has written a personal account hat characteristically includes her watching out for others with important analysis and advice which she agreed to share with the National Pain Report.

I have been diagnosed with Lyme Disease. I started experiencing symptoms in early July that progressively got worse and I was officially diagnosed last week. I am on the road to recovery but it has been a difficult journey and I still have severe headaches, neck pain and exhaustion that makes it challenging for me to get out of bed some days. I have times where I get a burst of energy and try to do an activity but those times are usually followed by the need to rest for hours. It is often hard to focus on all of the things I love, playing with my kids, spending time with my family, my work and even the simplest household tasks. Prior to this, I knew little about the disease and I have been surprised by the lack awareness, even in the medical community. So I am sharing my story to hopefully raise awareness and maybe this post will help someone in the future.

According to the CDC, more than 30,000 people are diagnosed with Lyme Disease each year and those numbers are increasing. The severity and long term complications are also on the rise. Sadly, most cases are often misdiagnosed and the longer you go without treatment, the more the disease progresses, and the more difficult it becomes to successfully treat. Cases that go months or even years untreated can lead to long term autoimmune disorders, permanent brain damage, Bell’s Palsy, and severe depression.

I am incredibly lucky that I was diagnosed early and started treatment within a few weeks. Some people go months and even years before being properly diagnosed. However, my diagnosis happened quite by accident. I was leaving the doctor’s office after I was tested for diabetes, ALS and a laundry list of possible culprits when I happened to look down at red bite mark on the inside of my arm and for some crazy reason an old episode of Curb Your Enthusiasm where Larry tells Suzy she has Lyme Disease jumped in my head. I called my Mother-in-Law and asked if they had ticks near their Northern California home that we had visited a few weeks earlier. Turns out they do. I always thought ticks were a problem only in the Northeast but I now know they are geographically diverse little buggers! Since I live in Southern California, my doctors didn’t even think or consider Lyme’s as an option at first. After I requested a blood test, it revealed that I in fact had Lyme Disease and I began a rigorous course of antibiotics. Had I not thought to ask this question, we would still likely be trying to figure out what was wrong with me and losing time.

So here is what you can do.

Lyme disease

Image of Lyme disease from CDC website.

Prevention 1) Know if you are traveling to an area that has ticks, especially deer ticks and do what you can to prevent tick bites by using proper clothing and repellent. 2) Check yourself and your children for possible tick bites. Not every tick bite will lead to Lyme Disease but tick bites are the only way to get Lyme Disease. The pictures on the internet are really dramatic and talk about an obvious red “bull’s eye” ring but mine was just a small red circle a little bigger than a quarter with a little black bump in the middle. I assumed it was a spider bite and it took us a too long to connect the bite to my symptoms. If you have a persistent bite that won’t go away, get it checked out immediately.

Know the symptoms of Lyme Disease: Only 50% of Lyme suffers even remember a bite, so be aware of other symptoms that can mean Lyme Disease. Lyme disease symptoms include: flu like symptoms, a red “bulls eye” rash, exhaustion, debilitating headaches, neck and muscle pain, joint pain, inability to focus, short term memory loss, and loss of feeling in hands and feet, just to name a few. The symptoms tend to vary greatly but if you have any combination of these and suspect you could have Lyme disease, ask for a blood test. I would also recommend that you find a Lyme Specialist or ILADs doctor to seek the most aggressive treatment available today.

I certainly am no expert, but I have learned a lot over the last several weeks. It has been a debilitating and difficult time for me and my family. I have a few weeks of treatment ahead of me, but I am so grateful to my doctors. I am feeling pretty good today and I am confident that I will be 100% back to my old self soon. I just wanted to thank my friends, family and colleagues for your continued support. I wanted to especially thank my partner in life, Steve Jacobs and my partner in work Dawn Thompson. I don’t know how I would manage without you!

 

Authored by: Amy Lessenger Jacobs

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Jenn

It can’t be stressed enough that the blood tests for LD are extremely inaccurate and miss almost 40% of positive results. This leads to thousands of people having to suffer years before getting treatment and then that treatment is almost always insufficient.

Also, ticks are not the b only way to contract Lyme. It can be spready by mosquitos, fleas, sexually activity, and childbirth. Few docotors will acknowledge the science.

Thanks for the article and I’m so happy for the people like you that get an early diagnosis!

Geo

The CDC and doctors in the West seem to think there is no way someone can contract Lyme in my area but I was bitten at age 10 in California and again at age 20 in Nevada. I was misdiagnosed with Arthritis, Chronic Fatigue Syndrome, Peripheral Neuropathy, PTSD, Fibromyalgia and Somatic Pain Disorder. I was given so many drugs to treat all these symptoms that I was unable to walk, talk, work or feed myself. Once I was diagnosed 2 years ago I spent my entire life’s savings, cashed in my retirement and borrowed all the money I could to treat it because my insurance company would not acknowledge it was possible for me to have Lyme. 18 months and $60,000 later, now that I am cured, they still won’t treat my nerves that were severely damaged by the disease. http://www.gofundme.com/xxfyz45w

shathi

I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

Robin Birdfeather

Dear Amy, Much thanks for doing this particular kind of civic duty in talking about your personal experience with Lyme (no ‘s’ please). I’m glad for your having the sense to follow your intuition and help your own health so quickly. This could guide a lot of people to check things for themselves. Looking over your symptom list which, with one partial exception, is the broadly common array of symptoms that feel so mysterious and are becoming so common, I was struck by your description of the bullseye rash. The facts as we now know them indicate that fewer than 50% of bites present with a rash. The reason it’s so important to include this figure is the very reason that so many doctors – and Lyme victims – do not test or get a shot right away, the thought being “no rash, no Lyme”. Since you seem to be, thank god, so quickly on the mend, it might happen that you do not pursue more of the new immense findings and research of Lyme and its several co-infection possibilities. There’s really a question for each of us with Lyme and its cohorts on how to improve our personal care by continuing the updating of our knowledge. http://www.LymeDisease.org is one of dozens of places to start; also local LD support groups. For this is a huge area with huge consequences; such as the fact that LD can hide ‘underground’ for years and spring back under stress; such as the newly announced number of cases that the CDC is admitting to – from 30,000 a year to 10 times that much – 300,000 a year. I am not trying to scare you or anyone else. However, we are in a national, even international LD ‘plague’ time that does everything from lowering one’s ability to go on doing the life they want and were doing, to being the cause of death. A short note on how I come by this info: I had a bite I did not feel, in 1964, with no rash but with the other symptoms I explained away as stress and a difficult marriage. It was during my second pregnancy (it can pass into the uterus and the baby but in my case, luckily did not), but I could not then get a diagnosis until a second bite, with a rash and the other symptoms, in 2002, this time with three co-infections: Babesia, Bartonella and Erlichia. This whole bundle required six straight years of antibiotics, doxycycline for One Year being the first part of the treatment. Way too many untrained doctors follow the hugely unsuccessful ‘advice’ to treat with doxy for only eight weeks.Sometimes this will do it, quite often, not. The other antibiotics differ with the type of co-infection. We should all be looking for the initials LLD or LLMD (Lyme Literate Doctor) because the study for the treatment of LD, et al, is a quite intense one, requiring a lot of extra and focused effort and… Read more »