Two Steps Forward, One Step Back, and Some Rough Terrain Ahead

The good news: I seem to be regaining a little of my cognitive functioning. I can remember a few things now and then and I can communicate a little better. 

We went to Hatteras on my antibiotic break in August with two other families and stayed in the new trailer.  It was a wonderful break and a great time. We came home to start back on the antibiotics and to weather  Irene.  We were fortunate to have a new generator and less that a day without power. The house was fine but for the loss of a few shingles.  I think the generator's presence accelerated our restoration of power. The storm shutters miraculously move the storm's path. We still have not heard if we have a trailer or not, but that is nothing compared to the suffering of others on the island and up north.  They are in my prayers.

Labor day weekend I had some swelling and discomfort in the arm with my PICC line (Peripherally Inserted Central Catheter: IV line) My nurse looked at it and said to go to the ER if it got worse.  The swelling seemed to go down some, so I took it easy all weekend.  Sunday night my hand was quite swollen and uncomfortable and I awoke with my arm over my head.  I guess I was elevating it in my sleep.  I packed a little bag just in case and went to ER.  I had been a few weeks earlier for swelling and the tests came back negative for clots, so I was just going to be sure it was just inflammation like the last time.

As it turned out I had blood clots in my forearm, 100% blockage at my PICC site, clots under my clavicle and in my neck.  They started me on blood thinner shots and Ron brought me home.  They removed the PICC line Tuesday morning and put a new one in my right arm. This is the first time I have been scared through all this. The prospect of a heart attack, stroke, or pulmonary embolism is daunting.  It has shaken me more than I can describe.  I cannot lift things, push a heavy shopping cart, or even stir the dog food.  I am so used to being independent and now I am uneasy to be alone for any real length of time. I am so grateful for Ron, Lee and my close friends.

Last Thursday was my appointment with my doctor in DC. My niece Sabrina (Bill and Melissa"s daughter) had a clot in her Central Line ( she has had a transplant and gets nutrition and medication through her line).  She had to be at Georgetown University Hospital on Thursday as well, So we had a family caravan with IVs in backpacks running the whole way up. As mom used to say, "It was an adventure!" Sabrina had her new line placed, but is now at CHKD today with an infection in her line. I can only pray for her healing and strength for Bill and Melissa.

Despite the blood clots, my doctor thinks I am responding well to the treatment and  sees some improvement earlier than he expected. (That was the good news by the way.) Ron's brother, Chris, was in Northern Virginia and brought me home from Georgetown. We made it back in time for Lee's last school open house.

The new antibiotics are the strongest yet. Monday was rough, but manageable since I did not have to do anything.

I went to my Garden Club meeting yesterday and tried to pretend I was better. Marnie Morgan, who has known me since I was a young child (Mom worked for her husband for over 25 Years), called me out when I said I was doing OK by looking me in the eye and saying, " You're lying." She has a loving directness one cannot escape, and I know why Mom cared so much for her. I think Mom may have been with her at that moment. I even wore high heels, but walked more like a little girl playing dress-up in her mommy's shoes. I went home and was asleep at 5:30 did my IV at 9:00 and slept through the alarms on the pump and my phone until 7:00 AM.  I wanted to see Sabrina today, but my tremors were so bad after the antibiotics, I did not feel comfortable to drive. 

This week is the warm-up round, next week the regime intensifies with the addition of two other drugs and a solid week of treatment with no rest days.  Dr. Jemsek said other patients have described this phase as the "sickest they have ever been". Sounds like yet another adventure!

Commonwealth of Virginia The Governor’s Task Force on Lyme Disease

http://www.natcaplyme.org/images/stories/pdfs/GovTaskForceFINAL.pdf

In response to reports of the growing number of cases of Lyme
disease and other tick-borne illnesses and out of a sense of concern
for the significant number of Virginians infected with these
diseases, Governor Bob McDonnell and Secretary William Hazel
convened this task force to study and make recommendations in
the following areas:
• Diagnosis
• Treatment
• Prevention
• Impact on Children
• Public Education

West of Jesus and the Data Dump

Last week I read a book.  This is quite an accomplishment as I have not read a new book in over a year. I have a stack of books over two feet high that I have not been able to read past the tenth page because of my inability to remember details and follow a story.  I might count "The Sun Also Rises" that I read on vacation in Costa Rica, but it was the second time I had read it. Then again all I remembered was that it was about drinking, bull fighting and Spain. That is all I got out of it again except that the main character who had been injured in the war was like the steers that calmed the bulls when they were penned, just as he  managed to calm his brawling, drunken, jealous, licentious friends. I love Hemingway.

The book, West of Jesus, was written by a surfer who has Lyme Disease.  It is not really about Lyme Disease, but about the spiritual quest that accompanies a life altering illness. He begins searching for the origin of a surfing myth about a "Conductor" who can summon the waves and control the swell. He goes all over the world to learn more of the story and find an understanding of how surfing is such a powerfully spiritual sport. He finds his peace while surfing, when he is close to death, but his body and soul unify with God and no longer feel separate.  His conduit for this state of elevated consciousness is the wave. I have a better understanding of why Ron loves to surf and and appreciated Lee's growing connection to the sea.

When you are sick, your goal is getting your old life back, and then you realize that can never happen. This is the second revelation in the book: Life will never be the same. Your mind, body and spirit are transfigured in a way that makes this impossible. You cannot go home again.


When Ron and I  were discussing the book with Lee, Mackenzie ( Maryanne and Eric's daughter) and her friend Colleen at Rocco's in Hatteras, I could not remember the details of the book just a few days after finishing it. Ron asked me to tell a story from the book, but all I could do was shake my head.  He told the story for me. I am left with, however, the essence of the book and an understanding of the spiritual quest we all face as we live our lives. 


As I finished the book, I had a computer guy come over to restore the data I had backed up with Norton from my last computer before its untimely demise. As he loaded the files, we realized that all that was there were a few images and a lot of junk; all those useless banners and web page images that get stored in your drive and slow things down.  Thousand of them, all useless. there were no documents, no cookbook ( an on-going, unfinished project), no pictures, no school projects, no excel sheet with all our accounts, user names, passwords.  The things that Ron would need if I were not around.  The things that I need now that part of me is already gone! I hope I printed a hard copy of the excel sheet and stuck it in a file.

Having Lyme has cleared out all the useless data along with some important memories, but I don't remember to stay mad, I have lost most of the indignation that I felt when others did not do the right thing. There is hope for new experiences and challenges and rebuilding something better.  I will try to hold on to what is left that is good and let the rest wash away. The data is gone, but my spirit, faith, and love remain. With that I can make new memories, write new and better recipes, and let go of what I have lost because what remains has so much more value.

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.