TOP TEN TIPS TO PREVENT CHRONIC LYME DISEASE

TOP TEN TIPS TO PREVENT CHRONIC LYME DISEASE

by The International Lyme and Associated Diseases Society

Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called "telltale signs" of Lyme disease: discovery of a tick on the skin, a bull's eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the "great imitator" because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. ILADS is committed to the prevention of chronic Lyme disease. The following tips are designed to offer guidance and minimize the risk of contracting chronic Lyme disease.

1. Know that Lyme disease is a nationwide problem

Contrary to popular belief, Lyme disease is not just an "East Coast" problem. In fact, in the last ten years, ticks known to carry Lyme disease have been identified in all 50 states and worldwide. Although the black legged tick is considered the traditional source of Lyme disease, new tick species such as the Lonestar tick and a pacific coast tick, have been found to carry Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme disease.

Avoiding a tick bite remains the first step in preventing chronic Lyme disease. One needn't have been "hiking in the woods" in order to be bitten by a tick. There can be ticks wherever there is grass or vegetation, and tick bites can happen any time of year. Spraying one' s clothes with DEET-containing insecticide, wearing long sleeves and long pants, and "tucking pants into socks" , continue to be the best ways to avoid ticks attaching to the skin. But don't forget the post-walk body check.

2.Check your tick facts

Ticks can vary in size from a poppy-seed size nymphal tick to a sesame-seed size adult tick. The ticks can carry other infectious agents besides the spirochete that causes Lyme disease, including Ehrlichia, Anaplamosis, Babesia, and Bartonella. Lyme disease can sometimes be hard to cure if these other infections are not treated at the same time.

3.Show your doctor every rash

The bull's eye rash is the most famous, but there are many other types of rashes associated with Lyme disease. In fact, Lyme disease rashes can be mistaken for spider bites or skin infections. Take photos and make sure a medical professional sees the rash before it fades.

4.Don't assume that you can't have Lyme disease if you don 't have a rash

Lyme disease is difficult to diagnose without a rash, Bell's palsy, arthritis, or meningitis, but you can still have Lyme and not have any of those signs or symptoms. Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling.

5.Do not rely on test results

Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. As a result, the CDC relies on physicians to make a clinical diagnosis based on a patient's symptoms, health history, and exposure risks. Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are present, even without a positive test, in an effort to prevent the development of chronic Lyme disease.

6.Be aware of similar conditions

Chronic Lyme disease is called the "great imitator" because it is often misdiagnosed as another condition such as Multiple Sclerosis, Fibromyalgia, chronic fatigue, or anxiety. Misdiagnosis is a common experience for patients with chronic Lyme disease. Treatments that work for these other illnesses are not appropriate for treating Lyme disease. Currently, the only effective treatment for Lyme disease is antibiotics. Ask your doctor to carefully evaluate you for Lyme disease even if your tests are negative.

7."Wait and See" approach to treatment may be risky

Up to fifty percent of ticks in Lyme-endemic areas are infected with Lyme or other tick-borne diseases. With odds like that, if you have proof or a high suspicion that you've been bitten by a tick, taking a "wait and see" approach to deciding whether to treat the disease has risks. The onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure. This is one case in which an ounce of prevention really is worth a pound of cure.

8.Don't be afraid to get a second opinion

Recognize that opinions on how to diagnose and treat Lyme disease vary widely among physicians. It is worth getting a second or even a third opinion, especially if you are symptomatic and your doctor advises not to treat, or symptoms recur or persist after treatment. Keep in mind that your physician may focus too narrowly on diagnosing and treating a single symptom. For example, a physician may diagnose a pain in your knee as "arthritis", and not see this as just one part of a larger set of symptoms that adds up to a diagnosis of Lyme disease, which requires different treatment.

9.Know your treatment options

Work with your doctor to identify the appropriate treatment option if your symptoms persist. There is more than one type of antibiotic available. Longer treatment is also an option. You should also work with your doctor to make sure you don't have another condition.

10.Expect success

You should expect to get better. You should not accept "watchful waiting" - the practice of stopping antibiotic treatment before you are well and then waiting for symptoms to clear on their own. Some doctors advocate stopping Lyme treatment while the patient is still symptomatic and then hoping that he or she will eventually recover without further treatment. Government trials have identified a number of individuals whose symptoms did not clear when treatment was cut off prematurely. There are doctors who feel your symptoms will clear with further antibiotic treatment.

One Month Down...

I have completed my first month of antibiotic treatment and now have a week off.  I have had some good days, but many I have been achy, tired and have a constant trembling feeling. I often find my hands clenched and my muscles tightened as a counterbalance. The swelling in the joints of my hands has improved and I hope this is my first sign that the antibiotics are having an impact.

Yesterday I sat on the beach with friends for an hour and a half. It was good for my soul.

Thursday we head back to DC for my doctor's appointment and the test dose of the next antibiotic treatment. I guess it is time to read up on what to expect next, but I might wait a day and enjoy an evening on the porch.

Short-Lived Pity-Party This Morning

Over the past few days I have felt like I am in a bubble.  The world seems like it is whooshing by me at a breakneck pace while I live in my quiet Lyme Bubble.

The downside of the bubble is there is an IV pump and antibiotics, enough pills to choke a horse, nausea, strange blisters starting to appear on my face, more tremors, and pain.  This increase of symptoms is welcomed as it means the antibiotics might actually be doing something.  It is called the The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms.

So this morning I had a pity party and cried for about thirty minutes.  I cried because I hurt; I cried because I am frustrated that I cannot get the basic responsibilities I have done; I cried because my husband has to carry a heavier load, I cry because my diminished mental capacity frustrates and baffles my husband; I cried because I am too tired to go out to dinner and see a movie; I cried because I really want to go to our new camper in Hatteras, but I have to be home for nurses to to change my dressings; I cried because I cannot properly articulate myself or explain how I feel.

I just needed to cry. 

I have not cried since the day I was diagnosed with dementia in January. I cried for ten minutes or so in the parking lot of my neurologist's office.  I called Maryann and she had me laughing in a few minutes after telling me this was great that I finally had an  "average  " IQ. I let her know that was the worst thing she could ever tell me.  She is the best. Only Maryann could have me laughing and crying at the same time.

So with my Pity-Party out of the way, I showered, hooked up my IV and put the IV ball in my pocket.  Choked down a dozen pills, made breakfast for my boys and hugged and kissed them as they set out for Hatteras.  I walked the poor dog who was equally put out by having to miss all the fun and opened all the windows to let the fresh air in on this beautiful day.

I plan to sit on my porch, read, and enjoy being in the bubble.  Of course I won't remember what I read, but I will remember that I enjoyed the smell of the ocean, the cool breeze and the fresh air.

The Best Presents Often Come In Ugly Wrapping Paper.

I have finished my first week of antibiotic treatment and it has not been too bad. I am quite tired and achy, but it is just a little more than what I have been living with for a long time.  Antibiotics are on Monday, Wednesday and Friday, two times a day and alternate days are IV fluids.  Right now I have my pump running and I use a small backpack to carry it around for three hours. I wish I could go to the Old Beach Farmer's Market this morning, but I doubt I am supposed to drive while hooked up to an IV.  Instead I played fetch with Sydney and enjoyed the cool wet grass under my bare feet.

Yesterday I had to get out of the house for a bit.  I stopped by the Second Yard to say "thank you" to a friend.  About a month ago I was on the fence about getting IV treatment for Lyme.  The medications I have been on had mitigated some of the symptoms so maybe IV treatment was a little extreme.  When I mentioned Lyme, my friend BJ told me she" knew all about Lyme".  The way that she said it was so deeply felt that I pressed her a little to tell me about it.  She told me about her brother who lived in Northern Virginia.  He was very athletic and a PE teacher.  He felt sick one day and went a cardiologist for a workup.  They could not find anything, so they sent him home.  The next day while teaching a class, he collapsed and died.  When they did an autopsy, they found out he had Lyme and it had attacked his heart. The pain she felt was still so fresh three years later it broke my heart for her.

The day after seeing BJ, I went to my Garden Club meeting even though I was having a bad day. I love my Garden Club Girls.  In one group of ladies, I have friends, sisters, mothers and grandmothers.  Since I lost Mom and Grandma when I was 40, these ladies, who are so accomplished, caring, civic minded, and share a love of flowers and gardening, fill a tremendous hole in my life. That day I had an overwhelming feeling of fatigue and was experiencing tremors not just in my hands, but in my whole body as well.  One of our members came up to me before the meeting and showed me her tick bite. She stated she did not have time to go to the doctor, but  I made her promise me she would go.

While sitting on the steps during the meeting the tremors had increased and my feet turned purple.  My friend Terri and I chair the Conservation Committee, and we decided that part of our report would be to explain the importance of using a bug repellant with DEET every time they are out in the garden to prevent tick bites, and to get prompt and adequate treatment if they did get a tick bite. As I stood before our Club with my notes in hand, I explained to them what Lyme has done to me: heart damage, dementia, tremors...At this point my tremors escalated and were uncontrollable.  The more I tried to control them, the worse they became. They were so intense, it reminded me my Grandmother's worst episodes with Parkinson's.  My "sister/friend", Terri, hugged and consoled me until the tremors subsided to a fine hum.. Terri's deep faith and selfless love helped restore me that morning. Later, during a committee meeting that I was "leading" I do not think I said anything comprehensible.

I could no longer deny the extent of my illness.

Now, one week into treatment, although I know things will get worse before they get better, I see the many blessing and gifts I have already received: a loving and caring family, a loving God who puts people in your path to show you what you need to do, gifts of food, friendship, and flowers, and hope for recovery.  The best presents often come in ugly wrapping paper.

I am not stressed. I am not depressed.

My neurologist said I have Alzheimer's, Parkinson's, ALS or Huntington's Disease, or neurologic Lyme.  There is no other choice than to treat for Lyme.  The other possibilities are untreatable and progressive. If it is not Lyme, I have ten years.  I think I like the Lyme diagnosis best!

The doctor who inserted the PICC line last Wednesday said, "So you have SUPPOSED neurologic Lyme?" I said, "Well, I have had two tick bites with documented EM rashes, and I have been diagnosed with dementia, so yes." 

This page is dedicated to him.  It is so compassionate to make medical/political judgements about a patient you just met while they are on your operating table.  I wish I could tell you his name, but of course, I forgot.

The Trial to Diagnosis and Treatment of Neurologic Lyme

I am a 43 year old female with a history of SLE, asthma, and endometriosis.  I had a tick bite in April of 2008.  The rash was between 4-6 cm with a bull’s eye, but it was also very hot and inflamed. The first doctor prescribed 2 doses of 200mg Doxycycline, the second gave me a week@ 200mg per day, and my internist gave me a month’s supply at 200 mg 2 times a day after I had read about impact on immune-suppressed patients and experienced profound illness from the tick bite.  I seemed to improve, but had a lupus flare as a result of infection.  After taking the antibiotics for three weeks, I was told, the skin blisters and photo-sensitivity could be from the medication and discontinued the medication.  I seemed to be better, but later had issues with mild memory problems and brain fog.  Since this can also be attributed to Lupus, and infectious disease doctor said my Lyme tests were negative, we focused on Lupus causes.

In September 2009, I had another tick bite on my left armpit.  The rash had a faint bull’s eye, but was not inflamed like the previous bite. Because it was not the same, my first ID doctor implied Lyme infection was dubious the  first time, and a sense of “I could not possibly get this again”, I dismissed it.  Several weeks later I came down with what I thought was “Swine Flu”, took Tamiflu within 36 hours of onset, but was sick with fever, chills, and tremors for about 10 days.  I never seemed to recover, but attributed it to Lupus as a reaction to the flu.  I went from working out 3 to 5 days a week, to barely being able to maintain my household or personal care.  

In January of 2010, my resting heart rate was 100+ as noted by my rheumatologist.  I was sent to the cardiologist for an echo and wore a heart monitor for one month.  Resting heart rate remained in the 80 to 100+ range and there was at least one incident over 178 beats per minute without exertion or stress.

Cardiologist prescribed Calcium Channel blockers, but discontinued due to migraines.  Prescribed Beta blockers, but I did not want to take until we ruled out causes like thyroid, Lupus, deficiencies, etc. Lots of blood work.  No causes.  

Started to back track symptoms to Swine and tick bite when memory issues increased from a fog to obvious dysfunction.  Maybe it was not swine, but Lyme.  Looked at CNS Lupus, scheduled neuro-psych testing , infectious disease consult.  All takes six months or more to complete/schedule. MRI did not show lesions on brain, so the infectious disease doctor had a three month follow up. No treatment.

I am a 43 year old woman taking Namenda for dementia, I can barely type unless I look at every key, I can no longer articulate myself, spell, write what I think, plan projects and complete them like I used to. I am getting lost when I drive.  

I scheduled an appointment with a Lyme specialist. 42 vials of blood, SPECT scan of the brain and another MRI several trips to Northern Virginia and I am finally starting treatment.

I met with my internist and she agrees this is my best hope.  I need to be well again.  I have learned to adapt to Lupus and live well with it, but I cannot live well if my mind and health continue to deteriorate.