Erich's Lyme Disease Blog
By Erich Luening
(Editor's note: for the past few weeks, we've followed our correspondent Erich Luening's recovery from Lyme disease. We hope he's on his way to full recovery. His final entry - and all his previous entries - are below. You'll also find a photo of Erich at the very bottom of the page.
Want to share your thoughts on this blog with Erich? Contact him directly by e-mail.
Tuesday December 19, 2006
On My Way
Day by day I am making my way out of the fog. Though I still have a hard time getting going in the morning, my productive part of the day is much longer.
I have been able to work more on my journalism as well as my applications to grad school.
My doctor says I am recovering. I am not fully recovered and that may take a longer time than normal because of the triple hit my immune system took after I was diagnosed with Lyme Disease in October, mononucleosis later that same month and pneumonia at the end of November.
However, I feel the best I have felt in months and I have changed my diet, adding vitamin supplements, and balanced food sources to help revive my immune system.
With that, I would like to thank all those who have supported me along the way during this trying time.
First, my family for getting me to the ER those couple of times when I was so out of it and couldn't drive myself. Second, Steve Young, program director at WCAI, for allowing me to keep working and create something positive out of the illnesses. You don't know how important that was. Finally, I'd like to thank those of you who sent emails and encouraged me a long the way offering remedy ideas and simple encouragement.
Over the last few months I have come across a number of sources online that provided information on all three illnesses. Because this is the Lyme Blog, I will stick to those links that provide information on the tick-born illness.
1. LymeInfo.net is a helpful web site that attempts to organize all the various Lyme-related web sites on the net into one source. I used this as a jump off site to find other sources on the net.
2. The University of Maryland Medical Center's web site was a good source for symptom information, natural remedies, and diagnostics.
3. MotherNature.com was a helpful web site on finding natural remedies for treating Lyme disease as well.
For the most part, Google provided the best way to quickly get information on Lyme. But those sites listed above were easy to read and directed me to other sources online as well.
That said, the most valuable resource wasn't plugged into the wall and linked to my digital broadband connection. It was the many people - friends and family alike - who have had Lyme disease and were willing to talk about their experiences with the illness and how they kicked it. I hope the Lyme Blog has helped those of you who have yet to catch the disease, and those who have. Stay tuned to WCAI for further coverage down the line on efforts to study the disease here on Martha's Vineyard and Nantucket as well as local health efforts to treat those who suffer from the illness every year. Thanks again for reading and Happy Holidays.
Erich
Saturday December 16, 2006
Road to Recovery
Although it has been a bit bumpy, I am on the road to recovery, according to Doctor Ellen McMahon, my primary physician. I had a follow-up visit with her Thursday to look at results from my latest round of blood tests and x-rays.
First the good news: X-rays of my lungs found that the pneumonia has cleared.
The bad news: I am still anemic, though not as bad as two weeks ago. And my liver counts are still higher than normal. Both findings indicate that I have not cleared the infection in my body completely.
"You took a triple hit to your immune system, so it is going to take time," Dr. McMahon said.
(Reminder: I was fist diagnosed with Lyme, then followed up a week later with mononucleosis. Finally, pneumonia struck just a little more than two weeks ago.)
I told her I did still feel slightly behind the 8-Ball. I have been unable to do a full day without feeling light-headed and exhausted at the end of the day.
We discussed liberalizing my diet. I had been doing my own meat and vegetables diet to cut out all white flour and sugars to lose weight. For some reason I thought I would cut potatoes out as well.
She said she wants me to include more green vegetables like red lettuce, spinach and kale into my diet as well as a few potatoes. My mom will be happy about that.
I also discussed including Spirulina in my diet. She said she thought that would be a good addition. The microscopic green algae is produced commercially and sold as a food supplement. It helps in the reduction of cholesterol and enhances the immune system among other things.
Along with changes in my diet for at least a month's time, she recommended I start taking a multivitamin as well.
For some of you, this may all seem normal dieting. For me, it is all pretty new. My diet has not really changed that much since my early twenties. Sure I cook for myself a lot more, but the diet was according to my desire to manage my weight, rather than maintain good health. If I looked trim I must be in good shape. Right?
Wrong!
My doctor said she will want to take additional blood tests in a month. For now I am revamping my diet and searching for a good multivitamin. Any recommendations are welcomed. Just email me at the address provided at the top of the blog. I plan to conclude my musings in the next and final entry to the Lyme Blog next week. I will add some comments from readers and thanks to all that have supported me during this rough road to recovery. I will also provide some helpful online resources I have found along the way. Stay Tuned.
Thursday December 14, 2006
The Good Doctor
I have an appointment with my doctor -- Ellen McMahon-- tomorrow. I have taken x-rays and blood tests yesterday and the day before to see what condition things are inside.
Outside I feel much better than I have over the last two weeks. I am still a little dizzy at times and have to rest when the feeling comes which is usually after about four hours of doing stuff - errands, writing, singing. I have been exercising as much as I can to try and gain more strength back, and have also keeping up with my Vitamin B-12, which is supposed to help.
Tomorrow, I will see what the next step is after my visit with the doc after we review my latest tests.
I thought I would just post this to keep you all abreast of the situation. Thanks for the well wishes from readers who have emailed me. I'll give a proper shout out when I wrap the blog, which should be in coming days. Stay Tuned.
Monday December 11, 2006
Natural choices
Choosing the right path to full recovery can be confusing, especially if it is incorporating natural remedies, like vitamins and herbs.
As noted in my previous entry, I am taking acidophilus to bring balance to the good bacteria in my intestinal track and Vitamin B-12 to help anemia and also help boost my immune system. Anemia (ah-NEE-mee-ah) is a medical condition that occurs when a person does not have enough red blood cells, according to Anemia.com, a website run by the biotech firm Amgen. Red blood cells are important because they contain hemoglobin, a protein that carries oxygen from the lungs to the body's muscles and organs. The body requires oxygen for energy. Therefore, when you are anemic, you may feel tired mentally and physically.
My doctor and the ER diagnosed me with anemia last week. On Monday, I will have some more blood tests to check my B-12 levels as well as hematology and liver count levels.
Once the immune system has been compromised, all sorts of things can happen to the body. As we saw with my illness (Lyme and mono), the door was swung open for other infections to attack the body. Friends who have also had Lyme say they too have suffered from other illnesses, like mono and pneumonia. Some continue to have Chronic Lyme Disease, or Post Lyme Syndrome. This controversial diagnosis is a systemic, debilitating condition which persists despite antibiotic therapy. Some people with this condition have to remain on antibiotic treatments for years, according to Lymeinfo.net. In my case, we treated the Lyme early enough to get it out of my system. Now we are working on rebuilding my ravaged immune system.
My friend, Pinto Abrams, who has Lyme a number of times, recommends I take Spirulina, which is a form of blue-green algae. It has been part of many diets around the world in Africa, South America and Asia.
According to the University of Maryland Medical Center website, spirulina is considered a complete protein because over half of it consists of amino acids -- the building blocks of protein. It is also a source of other nutrients including B complex vitamins, beta-carotene, vitamin E, carotenoids, manganese, zinc, copper, iron, selenium, and gamma linolenic acid (an essential fatty acid).
According to the University of Maryland medical Center website, animal and test tube studies suggest that spirulina increases production of antibodies, cytokines (infection fighting proteins), and other cells that improve immunity and help ward off infection and chronic illnesses such as cancer. It has also been found to treat anemia as well.
I will bring up Spirulina with my doctor next week to see if she agrees it should be part of my natural health path to recovery. Stay tuned.
Wednesday December 6, 2006
As it is the holiday season, I thought I would write a quick blog entry on the necessity for strong family support when stricken with a health crisis.
My family is as dysfunctional as the next. Sometimes it seems as though no family can compare. But when it came to supporting me during my current battle with Lyme disease and follow on infections - mono and pneumonia - my family stepped up.
It isn't uncommon for my mom and aunt to not talk to each other over this grievance and that. In fact, they are currently incommunicado. However, last week, while I lay on the stretcher in the ER with an IV in my arm and hacking away, my mom and aunt embraced over my bed. Maybe it was the IV and meds, but I felt a rush of well-being when that happened.
Despite their most recent grievances, of which I can't remember the source, the two most important gals in my life these days rose above the feud and were there for me and each other.
Marge, my aunt, was there for me when I awoke last Monday unable to drive myself down to the ER, suffering from a 103 F temp and unstoppable coughing.
My mom met us at the ER with one of my sisters, Sabrina.
I have to admit I was a little scared. My mom, Louisa, and Marge had not spoken for weeks. But under the sway of pneumonia I just hoped for the best.
If you are lucky enough to have them around, family can offer support unlike anything else. There is little that can replace the power of family support during times of need.
Sure, support of any kind is welcomed. Friends, the church, and co-workers can all play a part in providing assistance to someone who is struggling or suffering, but there is nothing as sincere or even unconditional as support from ones own family.
Although I am thankful that my mom and aunt put aside their latest differences to help me out while I was down and out - do laundry, keep the kitchen clean and pick up my mail from the post office, they did get a little carried away.
After I came down with pneumonia last week, they both got together and decided it might work better if my mom took my car for "a few days" to allow her to get my mail and do some laundry and stuff.
More important - to them - was to keep me from having the opportunity to go out and do stuff I shouldn't be doing during my recovery - like work, gigs (I'm a musician as well as a reporter), and visiting friends. My aunt at one time even tossed around the idea of taking away my laptop. I won that battle, thank God.
I just got my car back yesterday and got to go down to Healthy Additions in Vineyard Haven to pick up some Vitamin B-12 and Acidophilus to start my natural healing path. The B-12 is to give me more energy and give a boost to my depleted immune system. The Acidophilus will help rebuild the natural stomach bacteria knocked out by the various antibiotics I have been taking for the past three months.
I plan to fully get started on the natural remedies once I have completed my latest antibiotic regimen. Stay tuned.
Monday December 4, 2006
During my second visit to the ER in less than 72 hours on Wednesday, thanks to a spiked temp at 102 F, I was startled when the ER nurse, Rick, pulled up to my bed with about four different blood sample vials and another needle.
The good doctor Peter Laursen had decided to run a gamut of tests looking for signs of Tularemia, Rocky Mountain Spotted Fever, further Lyme antibodies, and white blood cell counts.
I had woken up that morning after a night of more fever chills and high temps. Early in the day my temp was at 100.5 F, which caused my PCP (primary care physician) to send me back to the ER.
I had been in the ER so many times in the last two weeks that everyone on staff was calling me by my first name, which sort of felt eerie.
"You back again?" asked the reception desk lady.
""Hi Erich, I saw you last week," said the triage nurse.
"You've had this cough since last Tuesday," said Dr. Laursen.
Yikes.
Anyway, the tests that came back showed no signs of Tularemia, Rocky Mountain Spotted Fever, or any noticeable Lyme antibodies.
It was thankfully just pneumonia. I can't believe I'm feeling that way, but after this last couple of months who knows what could come next.
Today, I had my first visit with Dr. Ellen McMahon, M.D., my PCP. She had been on holiday break until Tuesday and had a sick child at home, so her schedule was understandably filled.
We went over the blood tests and X-ray results from the last visit to the ER. She explained that the pneumonia was visible in my left lower lung. She agreed with the diagnosis and the treatment Dr. Laursen had put me on.
I am now taking Levaquin, a strong antibiotic that is taken for ten days. She also wants me to remain using my inhaler - albuterol and ipatropium.
I have been eating a lot of yogurt to keep my natural stomach bacteria in balance. When taking so many antibiotics, even your body's good critters get knocked out of commission. After looking at all the latest information she said she thinks the most likely series of events happened like this:
I got Lyme Disease in late October quickly followed by Mono. The double whammy impaired my immune system considerably. Although I did slow down my schedule, I did continue doing some work, and traveling off island, which brought on the first case of bronchitis last week. After a festive holiday weekend, with some rest, the bronchial infection most likely turned into bacterial pneumonia.
Now, we treat for another week or so, and take another round of blood tests and X-rays to see if the infection is taken care of.
After that we will then work to rebuild the immune system with some alternative treatments and vitamins as well as flu and pneumonia shots to fend off any further infections. Next I will highlight the specific vitamins and natural treatments I am going to employ as part of rebuilding the immune system. Stay tuned.
PS: I plan to end this here and now. I'm not going to accept anything short of complete victory over this illness. I say all this knowing how serious pneumonia can be. It can lead to death. Some of the famous victims of this disease are: Actor Charles Bronson, 2003; Confederate General "Stonewall" Jackson, 1863; Russian writer Leo Tolstoy, 1910.
Wednesday November 29, 2006
What Next?
For most people the consequences of a long Thanksgiving weekend tend to be long drives or flights back home, a few extra pounds around the waist, or maybe a dysfunctional family breakdown.
For me, it was bacterial pneumonia.
I woke up on Monday morning feeling pretty bad. I had expected to be a little under the weather because of the numerous festivities over the holiday weekend.
I did the dinner on Thursday with the family; then a post holiday dinner party with friends on Friday; and on Saturday night I went to check out a friend's band. On Sunday, I had dinner with my aunt and uncle and watched the Pats game - a very exciting game against the Chicago Bears.
Between all of those engagements, I rested and took my appropriate medications. I thought at the worst I might have to hunker down all Monday and see where I stood by Tuesday.
I never got that chance.
By mid-day Monday, I had a border-line high grade fever of 102.5 F. After I called and reported this to the nurse at my doctor's office, she said I had to go down to the ER immediately. My aunt drove me down from West Tisbury to the hospital in Oak Bluffs, which is about a fifteen minute drive.
When the triage nurse at the ER took my temp, it had risen to 103.4 F, which was nearly a one degree rise in temp in about 20 minutes. They rushed to get an IV of Saline Solution in me because I was severely dehydrated. They also took some blood.
By this time I could barely hold my eyes open and it all felt a little surreal. When your body begins to cook at a high-grade fever temperature, your brain goes into a melt-down. I kept repeating things and couldn't remember what I had told people minutes before. All efforts to talk and rationalize seem overwhelming.
After a second IV bag and some super-duper meds given intravenously to break the fever, I started feeling a little better. According to the ER nurse, the blood tests still showed possible signs of Lyme, but the white blood cell count was normal, showing no signs of bacterial infection in the blood - Thank God. They did not re-check for Mono because once you're diagnosed there is no medical treatment and you have it and need to just let it run its course.
The ER doctor said she heard through her stethoscope crackling in the lower right lobe of my lung. That, coupled with the high-grade fever and dehydration, allowed her to make the diagnosis of bacterial pneumonia.
She prescribed Zithromax, a strong antibiotic used to treat infections caused by bacteria. According to my discharge instructions, Zithromax kills bacteria or prevents it from growing inside your body.
I also was prescribed Vicodin, for pain management and fever busting. The well known painkiller is made up of hydrocodone and Acetaminophen (Tylenol). The Acetaminophen along with being a pain reliever is also good at breaking fever.
Today, my fever is back to normal. I still have aches and pains, especially in my lungs and upper back from the severe coughing over the last 24 hours. I have noticed some blood in the stuff coming up from the lungs (sputum).
I have an emergency appointment with my primary care physician tomorrow at 4 PM. Among other things, I will ask my doctor how I got here from being diagnosed with Lyme, to mononucleosis, to pneumonia. Stay tuned.
Tuesday November 21, 2006, 1:00PM
The Waiting Game
I'm in the hospital parking lot writing on my laptop in my Toyota Four Runner. I just went to the lab and got my follow-up blood tests to see what impact the antibiotics have had on the Lyme antibodies found in my blood over a month ago. The tests will also see if I still have mononucleosis as well.
It seems I will have to wait a few days before my doctor takes a look at the results, because of the Thanksgiving holiday. The office nurse, Karen, just told me to go to the ER if any of my symptoms get worse. She said to keep an eye on a cough that I've had for the last week or so. "Tell them you have mono, and have been treated for Lyme," Karen said.
3:00 PM:
After driving all the way home to West Tisbury and talking to family members, I decided I should drive back to the ER and have the cough looked at. I have been coughing less thanks to a couple of sips every few hours of Robitussin Cold and Flu, but my chest has started aching over the last few days. It has gotten so bad that it wakes me at night. After discussing this with family members, and at their urging, I thought it would make sense to go down to the ER before the Island gets packed with Holiday feasters.
The Martha's Vineyard ER has just eight beds. It is notorious for its long waits. I've covered the problems at the ER for the Cape Cod Times and WCAI. That's one of the reasons I first decided not to go to the ER earlier in the day. I didn't have the energy to wait and go through the whole rigamarole of registering etc.
As luck would have it, it appeared to be the quiet before the storm. I heard the triage nurse say it was all quiet before the holiday rush.
Over the years, the Island has become more and more popular during the holiday season as more people who own summer homes decide to come and warm up their homes for the holidays. You know, get away from New York, or whereever, and enjoy the bucolic surroundings of the off-season Island.
Because of this new found holiday popularity, the ER -- like four-corners, the blinking light intersection and the ferry terminals -- gets jammed.
But, thanks to my family's urging and prodding, my decision to come today and not wait another day has saved me from a busy ER.
I rushed through registration, waiting room, triage and doctor's evaluation in under an hour. I just got a chest x-ray and am waiting for the results. It's 4:00 PM.
4:35 PM:
X-ray was normal. No signs of pneumonia, which sometimes can come with mono, something called mono-pneumonia the ER doctor said. I was diagnosed with bronchitis. I was prescribed Robitussin with Codeine and a Combivent inhaler of ipratropium and Albuterol. The ER Doc said with my earlier diagnoses of Lyme and mono I need to rest a bit more to let my immune system heal.
5:30 PM:
I am home now. I plan to rest more than I have been. When I start to feel better, I won't jump back into normal routine as I have been doing for the past couple of weeks. Every time I do that, I seem to get knocked back a few days with exhaustion and flu-like symptoms.
Tomorrow, I plan to start a multivitamin treatment for Lyme. I should have my blood tests results in a few days. While the waiting game continues, I'll be resting on my couch on the sidelines and writing my blog. Stay Tuned.
Monday November 20, 2006, AM
More on natural treatments
In this entry I will continue evaluating some alternative healing treatments I am looking at to follow up my now completed antibiotic regimen of Doxycycline.
Most but not all of the natural healing methods are chronic Lyme disease, which can happen if the infection goes undetected (for instance if there is no rash) or if the patient doesn't respond to antibiotic treatment.
I should note that I didn't have a rash and have just wrapped up my antibiotic treatment. I am still feeling out of it, but think it may be the lingering effects of the mononucleosis.
Conventional doctors may prescribe an intravenous antibiotic for two to four weeks or a prolonged course of oral antibiotics. The alternative folks recommend a number of treatments, because of significant side effects prolonged antibiotics can cause.
Alternative healing guru Dr. Andrew Weil provides a number of alternative treatments on his website. He points people to Chinese traditional and modern medicine treatments. He has referred patients to Qingcai Zhang - a Chinese trained MD in New York City who specializes in chronic infectious diseases.
Zhang, according to Dr. Weil, uses anti-microbial herbs that act against B. Burgdorferi and other tick borne bacteria.
Alternative healers believe that many Lyme symptoms are often caused by infection by multiple organisms, which aren't always addressed by antibiotic drugs. Herbs are also used to strengthen immunity, reduce inflammation, ease joint pain, improve fatigue, and enhance brain function, depending, of course, on the patient's symptoms.
Some people have mentioned the use of acupuncture to manage and regulate pain as well.
Weil reports that Zhang's treatments have gotten impressive results: After six months or more daily herbal treatment, at last 60 percent of his patients with chronic Lyme were symptom-free and more than 80 percent improved.
I may inquire about the treatments provided by Zhang after I consult my doctor. My next move is to wait 6 more days and do another run of blood tests to see what things look like. If there are still some Lyme apparent in the samples than we may look at the intravenous antibiotic treatment coupled with some of these natural treatments.
Next I will look at my condition over the first 48 hour or so after finishing my antibiotic treatment. Stay Tuned.
Wednesday November 15, 2006
Martha's Vineyard is world renowned for its liberal politics and progressive thinking. And, when it comes to life all around, not surprisingly, it is flourishing with alternative efforts to treat Lyme disease.
A number of people have come up to me at Alley's General Store in West Tisbury or on Main Street in Vineyard Haven asking how far I am in my antibiotics treatment - 20 and counting - and if I am doing anything else in my recovery process outside of the standard medical treatment.
They then quickly recommend alternative remedies that should try after the antibiotics, ranging from diet changes, whole body cleansing routines and herbal remedies.
As I near the end of my 21 day antibiotics regimen I thought over the coming days I would write about some of the alternative types of treatment out there on the web and also talk to some Lyme disease patients who have tried these types of remedies.
Alternative recommendation
One example of an alternative remedy regimen comes from the alternative medicine website curezone.com. It recommends "a Lyme Disease Prevention and/or Curing Protocol," which includes lifestyle change, and implements healthy diet, body cleansing, exercises and different traditional and natural therapies.
The diet should include one low on toxins, certain fats and vegetable juices and water.
According to CureZone.com, body cleansing is also an important part of the process as well. The recommended body cleansing remedy includes bowel cleanse with parasite cleanse (Yikes!), a dental cleanse, a kidney and liver cleanse.
I plan to consult my doctor first before I start down the alternative remedy path. I recommend anyone interested in taking this path of treatment should also consult their doctor first.
My next entry will include more specific alternative treatments for Lyme recovery and I promise to stay away from mentioning a bowel cleansing in any form or fashion. Stay tuned.
Sunday November 12, 2006
Over the past week I have been trying to find out how I could be hit by mononucleosis while recovering from Lyme.
Just the other day I ran into a friend who is a longtime landscaper. She said one of the times she has had Lyme, she also got mono. I found another case like mine. I began to research online how frequently Lyme patients are struck with secondary illnesses and why.
Although most people infected by Lyme disease will suffer from symptoms caused by the bacteria -- fatigue, aches and pains in joints and flu-like symptoms -- a small number will go on to develop secondary illness or complications from Lyme disease. According to an article written by Dietrich K. Klinghardt, M.D., Ph.D., of the Institute of Neurobiology in Bellvue, WA, some cases of Lyme disease can cause immune system weakening or failure causing all known secondary illnesses such as herpes, virus infection, intestinal parasites, or malaise.
My doctor says that it is possible my weakened immune system may have allowed me to acquire a secondary infection of mononucleosis.
Infectious mononucleosis (mono), or glandular fever, is often called the kissing disease. The label is only partly true. According to the information on the disease on the Mayo Clinic web site, the virus that causes this disease is transmitted through saliva, so kissing can spread the virus, but so can coughing, sneezing, or sharing a glass or food utensil.
Mononucleosis isn't as contagious as some other infections, such as the common cold. Because of the contagiousness of mono, it is likely that I caught mono drinking from the same container by someone infected with mono or being around someone who transmitted the disease by coughing or sneezing. I think one of these is the most likely since I am currently not dating and have not necked with anyone in over... Let's just say it's been awhile.
As noted in one of my earlier blog entries, there is no real treatment for mono and the antibiotics I am taking for the Lyme have no effect on mono because it is a virus -- Epstein Barr -- instead of a bacterium.
For my next entry I will be looking at natural treatments for Lyme disease. Stay tuned.
Tuesday November 7, 2006, PM
One of the hardest struggles I've experienced so far while recovering from Lyme and, more recently, mono nucleolus is fending off the emotional downturns that occur. The lowest points come when I am unable to garner enough energy to do things I want to get done during the day, or night. I've also had some bouts of insomnia. This is ironic because of the lack of energy I feel during the day. It then doubles the lack of energy I have the next day, compounding my exhaustion.
I'm not alone.
According to a recent study -- Health Conditions and Health Status Report of Martha's Vineyard -- the high rate of Lyme disease -- a tick-born illness -- and depression cases on the island are connected.
A history of diagnosed depression is associated with Lyme disease, according to the report. People with a history of diagnosed Lyme disease were almost twice as likely to have a history of depression.
The report stated that Lyme disease is associated with depression on the Island, although the conclusion has to be examined more extensively in a long-term, population- based study where people can be followed regularly after they had a case of Lyme disease.
"Unfortunately, the results only leave us knowing that depression is associated with a history of Lyme disease, but does not tell us which came first," the authors of the study wrote.
I spoke with one of the authors of the study when I did my story on the report for the Cape Cod Times in September.
Dr. Diane Becker said there is still a lot of research needed to further understand how and why there is a connection between Lyme disease.
"We still don't know why there is a connection," she said. "Lyme does affect the brain and we would look at that in the future. We don't know if the effects on the brain are chronic."
Hopefully they're not.
As I said, the lowest points for me so far have been when I was unable to get out, get some work done on stories, or join friends for lunch or even dinner. Productive mornings have been nearly erased from my schedule.
After taking my morning antibiotics, I have to lie down and wait for the usual dizzy spells and nausea to subside before getting up and moving on with the day. My doctor said nausea is an unfortunate side effect of the Doxycycline.
With the recent diagnosis of mono, comes the real lack of energy. In fact, after I explained my symptoms to my doctor last week she insisted on getting a mono test, which came back positive.
I hope it won't lead to darker emotional days going forward. We'll have to see. And despite some dizziness earlier this election day, I did get down in the polls and vote. If I can do it, you can. Don't forget to vote and stay tuned.
Friday November 3, 2006, evening
If it doesn't rain it pours. I hate using cliches like that. But in my case it fits. I just got off the phone with my doctor, Ellen McMahon. After a follow-up visit with her yesterday and a subsequent blood test, she told me my most recent test came back positive for mono. So on top of the Lyme antibodies found in my blood last week I now have a mono condition I have to deal with.
My treatment regimen will not change. I am staying on the Doxycycline for another week or so for the Lyme and I will have to wait for the mono to run its course as well.
McMahon said we will repeat my Lyme test after antibiotics run out and see what has changed. She said it is most likely I caught the Lyme in its early stages and will not have any long range problems, like arthritis, bells palsy and more serious neurological symptoms.
"I want to track it after the antibiotics have run their course?" she said in the exam room at Martha's Vineyard Hospital on Thursday.
She decided to test me for mono after I told her my symptoms over the past week: aches and pains in joints, constant runny nose and cough, as well as headaches and exhaustion. A lot of those symptoms do occur with Lyme, but she thought they also could be mono.
In upcoming entries I will try and find research on Lyme related to other illnesses that may occur during the onset of infection. Is there a link between the two? Can people sick with Lyme be more exposed to get other illnesses? Stay tuned.
Wednesday November 1, 2006
As a contributor to WCAI and the Cape Cod Times I have covered the impact of Lyme disease on Martha's Vineyard for a few years now. The disease has a long history on the island. Being a resident of Martha's Vineyard since childhood, I am well aware of the dos and don'ts of working and playing in the woods and grasslands of the island.
That's why a letter from my doctor last week informing me of the discovery of antibodies consistent with Lyme disease in recent blood tests came as such a shock. And it's not as though I am an avid outdoors man. I am not a landscaper, gardener, or hiker. Thanks to a severe car accident I suffered in 2002 I am limited in my ability to trudge through the bush, or saunter down a forest path.< br>
The interesting thing is that my post accident condition may have prevented me from noticing the early signs and symptoms of Lyme in the first place. Lyme disease in its early stages causes flu-like symptoms and, if left untreated, may cause a variety of neurological and arthritic conditions. Thanks to my post-car accident aches and pains, I think I may have written-off early Lyme symptoms as just instances of over extending my compromised bones. As I look back, over the past three months or so, my energy level has declined. I have had Iritis (inflammation of the eye) in my left eye for six months, which caused my eye doctor and physician to check for Lyme in the first place. I have also had a number of bouts with bronchitis over the past year.
Just because my doctor found antibodies in my blood it does not mean they can tell when or how I got infected. This speaks to the larger issue of diagnosing and treating Lyme. Debate amongst doctors and patients exists on finding better ways to diagnose and treat the disease.
Lyme Disease Background
According to reporting by me and my colleagues at the Cape Cod Times, the Cape and Islands have the highest Lyme disease rates in the country. Ten percent of all cases in the state last year were in Barnstable County.
According to a recent study, on the Vineyard, Lyme disease cases have risen dramatically since a 2003 survey that found more than twelve percent of full-time - and seven percent of part-time residents - had reported a tick-borne disease during their lifetime.
For full-time island residents, the numbers of Lyme disease cases are triple the statewide rate. For part-time residents, the numbers are nearly double those across the state.
The same study found that people diagnosed with Lyme disease were almost twice as likely to have a history of depression.
The report found that up-island residents (West Tisbury, Chilmark and Aquinnah) were almost five times as likely as down-island (Vineyard Haven, Oak Bluffs and Edgartown) residents to have contracted the illness, with more than one-third of year-round Chilmark and West Tisbury residents having reported tick-borne diseases.
Treatment
It feels like a twenty-four hour hangover. Almost every morning I wake up I feel as though I haven't gotten a full night's sleep. I also have a lingering running nose and sneeze that has slowed some since I started my antibiotics regimen, but hasn't fully gone away.
After the blood tests, my doctor decided to put me on the standard three week antibiotics treatment after I told her about my lingering cold, and low amounts of energy.
According to reports in the Cape Cod Times, there is currently a bill before the Massachusetts legislature that would protect doctors who prescribe long-term antibiotics for the tick- borne disease, a treatment popular among patients but controversial in the medical community and insurance industry.
My doctor, Ellen McMahon, M.D. prescribed Doxycyline. I have to take 1 100 milligram tablet twice daily on an empty stomach. After a week of antibiotics, I have had more of my mornings back. I can make breakfast, get out and do a few errands before my energy wanes and I have to lie down and rest.
I have a follow-up with my doctor on Thursday to see where we go from here. Stay tuned.
Reporter Erich Luening:
(Editor's note: for the past few weeks, we've followed our correspondent Erich Luening's recovery from Lyme disease. We hope he's on his way to full recovery. His final entry - and all his previous entries - are below. You'll also find a photo of Erich at the very bottom of the page.
Want to share your thoughts on this blog with Erich? Contact him directly by e-mail.
Tuesday December 19, 2006
On My Way
Day by day I am making my way out of the fog. Though I still have a hard time getting going in the morning, my productive part of the day is much longer.
I have been able to work more on my journalism as well as my applications to grad school.
My doctor says I am recovering. I am not fully recovered and that may take a longer time than normal because of the triple hit my immune system took after I was diagnosed with Lyme Disease in October, mononucleosis later that same month and pneumonia at the end of November.
However, I feel the best I have felt in months and I have changed my diet, adding vitamin supplements, and balanced food sources to help revive my immune system.
With that, I would like to thank all those who have supported me along the way during this trying time.
First, my family for getting me to the ER those couple of times when I was so out of it and couldn't drive myself. Second, Steve Young, program director at WCAI, for allowing me to keep working and create something positive out of the illnesses. You don't know how important that was. Finally, I'd like to thank those of you who sent emails and encouraged me a long the way offering remedy ideas and simple encouragement.
Over the last few months I have come across a number of sources online that provided information on all three illnesses. Because this is the Lyme Blog, I will stick to those links that provide information on the tick-born illness.
1. LymeInfo.net is a helpful web site that attempts to organize all the various Lyme-related web sites on the net into one source. I used this as a jump off site to find other sources on the net.
2. The University of Maryland Medical Center's web site was a good source for symptom information, natural remedies, and diagnostics.
3. MotherNature.com was a helpful web site on finding natural remedies for treating Lyme disease as well.
For the most part, Google provided the best way to quickly get information on Lyme. But those sites listed above were easy to read and directed me to other sources online as well.
That said, the most valuable resource wasn't plugged into the wall and linked to my digital broadband connection. It was the many people - friends and family alike - who have had Lyme disease and were willing to talk about their experiences with the illness and how they kicked it. I hope the Lyme Blog has helped those of you who have yet to catch the disease, and those who have. Stay tuned to WCAI for further coverage down the line on efforts to study the disease here on Martha's Vineyard and Nantucket as well as local health efforts to treat those who suffer from the illness every year. Thanks again for reading and Happy Holidays.
Erich
Saturday December 16, 2006
Road to Recovery
Although it has been a bit bumpy, I am on the road to recovery, according to Doctor Ellen McMahon, my primary physician. I had a follow-up visit with her Thursday to look at results from my latest round of blood tests and x-rays.
First the good news: X-rays of my lungs found that the pneumonia has cleared.
The bad news: I am still anemic, though not as bad as two weeks ago. And my liver counts are still higher than normal. Both findings indicate that I have not cleared the infection in my body completely.
"You took a triple hit to your immune system, so it is going to take time," Dr. McMahon said.
(Reminder: I was fist diagnosed with Lyme, then followed up a week later with mononucleosis. Finally, pneumonia struck just a little more than two weeks ago.)
I told her I did still feel slightly behind the 8-Ball. I have been unable to do a full day without feeling light-headed and exhausted at the end of the day.
We discussed liberalizing my diet. I had been doing my own meat and vegetables diet to cut out all white flour and sugars to lose weight. For some reason I thought I would cut potatoes out as well.
She said she wants me to include more green vegetables like red lettuce, spinach and kale into my diet as well as a few potatoes. My mom will be happy about that.
I also discussed including Spirulina in my diet. She said she thought that would be a good addition. The microscopic green algae is produced commercially and sold as a food supplement. It helps in the reduction of cholesterol and enhances the immune system among other things.
Along with changes in my diet for at least a month's time, she recommended I start taking a multivitamin as well.
For some of you, this may all seem normal dieting. For me, it is all pretty new. My diet has not really changed that much since my early twenties. Sure I cook for myself a lot more, but the diet was according to my desire to manage my weight, rather than maintain good health. If I looked trim I must be in good shape. Right?
Wrong!
My doctor said she will want to take additional blood tests in a month. For now I am revamping my diet and searching for a good multivitamin. Any recommendations are welcomed. Just email me at the address provided at the top of the blog. I plan to conclude my musings in the next and final entry to the Lyme Blog next week. I will add some comments from readers and thanks to all that have supported me during this rough road to recovery. I will also provide some helpful online resources I have found along the way. Stay Tuned.
Thursday December 14, 2006
The Good Doctor
I have an appointment with my doctor -- Ellen McMahon-- tomorrow. I have taken x-rays and blood tests yesterday and the day before to see what condition things are inside.
Outside I feel much better than I have over the last two weeks. I am still a little dizzy at times and have to rest when the feeling comes which is usually after about four hours of doing stuff - errands, writing, singing. I have been exercising as much as I can to try and gain more strength back, and have also keeping up with my Vitamin B-12, which is supposed to help.
Tomorrow, I will see what the next step is after my visit with the doc after we review my latest tests.
I thought I would just post this to keep you all abreast of the situation. Thanks for the well wishes from readers who have emailed me. I'll give a proper shout out when I wrap the blog, which should be in coming days. Stay Tuned.
Monday December 11, 2006
Natural choices
Choosing the right path to full recovery can be confusing, especially if it is incorporating natural remedies, like vitamins and herbs.
As noted in my previous entry, I am taking acidophilus to bring balance to the good bacteria in my intestinal track and Vitamin B-12 to help anemia and also help boost my immune system. Anemia (ah-NEE-mee-ah) is a medical condition that occurs when a person does not have enough red blood cells, according to Anemia.com, a website run by the biotech firm Amgen. Red blood cells are important because they contain hemoglobin, a protein that carries oxygen from the lungs to the body's muscles and organs. The body requires oxygen for energy. Therefore, when you are anemic, you may feel tired mentally and physically.
My doctor and the ER diagnosed me with anemia last week. On Monday, I will have some more blood tests to check my B-12 levels as well as hematology and liver count levels.
Once the immune system has been compromised, all sorts of things can happen to the body. As we saw with my illness (Lyme and mono), the door was swung open for other infections to attack the body. Friends who have also had Lyme say they too have suffered from other illnesses, like mono and pneumonia. Some continue to have Chronic Lyme Disease, or Post Lyme Syndrome. This controversial diagnosis is a systemic, debilitating condition which persists despite antibiotic therapy. Some people with this condition have to remain on antibiotic treatments for years, according to Lymeinfo.net. In my case, we treated the Lyme early enough to get it out of my system. Now we are working on rebuilding my ravaged immune system.
My friend, Pinto Abrams, who has Lyme a number of times, recommends I take Spirulina, which is a form of blue-green algae. It has been part of many diets around the world in Africa, South America and Asia.
According to the University of Maryland Medical Center website, spirulina is considered a complete protein because over half of it consists of amino acids -- the building blocks of protein. It is also a source of other nutrients including B complex vitamins, beta-carotene, vitamin E, carotenoids, manganese, zinc, copper, iron, selenium, and gamma linolenic acid (an essential fatty acid).
According to the University of Maryland medical Center website, animal and test tube studies suggest that spirulina increases production of antibodies, cytokines (infection fighting proteins), and other cells that improve immunity and help ward off infection and chronic illnesses such as cancer. It has also been found to treat anemia as well.
I will bring up Spirulina with my doctor next week to see if she agrees it should be part of my natural health path to recovery. Stay tuned.
Wednesday December 6, 2006
As it is the holiday season, I thought I would write a quick blog entry on the necessity for strong family support when stricken with a health crisis.
My family is as dysfunctional as the next. Sometimes it seems as though no family can compare. But when it came to supporting me during my current battle with Lyme disease and follow on infections - mono and pneumonia - my family stepped up.
It isn't uncommon for my mom and aunt to not talk to each other over this grievance and that. In fact, they are currently incommunicado. However, last week, while I lay on the stretcher in the ER with an IV in my arm and hacking away, my mom and aunt embraced over my bed. Maybe it was the IV and meds, but I felt a rush of well-being when that happened.
Despite their most recent grievances, of which I can't remember the source, the two most important gals in my life these days rose above the feud and were there for me and each other.
Marge, my aunt, was there for me when I awoke last Monday unable to drive myself down to the ER, suffering from a 103 F temp and unstoppable coughing.
My mom met us at the ER with one of my sisters, Sabrina.
I have to admit I was a little scared. My mom, Louisa, and Marge had not spoken for weeks. But under the sway of pneumonia I just hoped for the best.
If you are lucky enough to have them around, family can offer support unlike anything else. There is little that can replace the power of family support during times of need.
Sure, support of any kind is welcomed. Friends, the church, and co-workers can all play a part in providing assistance to someone who is struggling or suffering, but there is nothing as sincere or even unconditional as support from ones own family.
Although I am thankful that my mom and aunt put aside their latest differences to help me out while I was down and out - do laundry, keep the kitchen clean and pick up my mail from the post office, they did get a little carried away.
After I came down with pneumonia last week, they both got together and decided it might work better if my mom took my car for "a few days" to allow her to get my mail and do some laundry and stuff.
More important - to them - was to keep me from having the opportunity to go out and do stuff I shouldn't be doing during my recovery - like work, gigs (I'm a musician as well as a reporter), and visiting friends. My aunt at one time even tossed around the idea of taking away my laptop. I won that battle, thank God.
I just got my car back yesterday and got to go down to Healthy Additions in Vineyard Haven to pick up some Vitamin B-12 and Acidophilus to start my natural healing path. The B-12 is to give me more energy and give a boost to my depleted immune system. The Acidophilus will help rebuild the natural stomach bacteria knocked out by the various antibiotics I have been taking for the past three months.
I plan to fully get started on the natural remedies once I have completed my latest antibiotic regimen. Stay tuned.
Monday December 4, 2006
During my second visit to the ER in less than 72 hours on Wednesday, thanks to a spiked temp at 102 F, I was startled when the ER nurse, Rick, pulled up to my bed with about four different blood sample vials and another needle.
The good doctor Peter Laursen had decided to run a gamut of tests looking for signs of Tularemia, Rocky Mountain Spotted Fever, further Lyme antibodies, and white blood cell counts.
I had woken up that morning after a night of more fever chills and high temps. Early in the day my temp was at 100.5 F, which caused my PCP (primary care physician) to send me back to the ER.
I had been in the ER so many times in the last two weeks that everyone on staff was calling me by my first name, which sort of felt eerie.
"You back again?" asked the reception desk lady.
""Hi Erich, I saw you last week," said the triage nurse.
"You've had this cough since last Tuesday," said Dr. Laursen.
Yikes.
Anyway, the tests that came back showed no signs of Tularemia, Rocky Mountain Spotted Fever, or any noticeable Lyme antibodies.
It was thankfully just pneumonia. I can't believe I'm feeling that way, but after this last couple of months who knows what could come next.
Today, I had my first visit with Dr. Ellen McMahon, M.D., my PCP. She had been on holiday break until Tuesday and had a sick child at home, so her schedule was understandably filled.
We went over the blood tests and X-ray results from the last visit to the ER. She explained that the pneumonia was visible in my left lower lung. She agreed with the diagnosis and the treatment Dr. Laursen had put me on.
I am now taking Levaquin, a strong antibiotic that is taken for ten days. She also wants me to remain using my inhaler - albuterol and ipatropium.
I have been eating a lot of yogurt to keep my natural stomach bacteria in balance. When taking so many antibiotics, even your body's good critters get knocked out of commission. After looking at all the latest information she said she thinks the most likely series of events happened like this:
I got Lyme Disease in late October quickly followed by Mono. The double whammy impaired my immune system considerably. Although I did slow down my schedule, I did continue doing some work, and traveling off island, which brought on the first case of bronchitis last week. After a festive holiday weekend, with some rest, the bronchial infection most likely turned into bacterial pneumonia.
Now, we treat for another week or so, and take another round of blood tests and X-rays to see if the infection is taken care of.
After that we will then work to rebuild the immune system with some alternative treatments and vitamins as well as flu and pneumonia shots to fend off any further infections. Next I will highlight the specific vitamins and natural treatments I am going to employ as part of rebuilding the immune system. Stay tuned.
PS: I plan to end this here and now. I'm not going to accept anything short of complete victory over this illness. I say all this knowing how serious pneumonia can be. It can lead to death. Some of the famous victims of this disease are: Actor Charles Bronson, 2003; Confederate General "Stonewall" Jackson, 1863; Russian writer Leo Tolstoy, 1910.
Wednesday November 29, 2006
What Next?
For most people the consequences of a long Thanksgiving weekend tend to be long drives or flights back home, a few extra pounds around the waist, or maybe a dysfunctional family breakdown.
For me, it was bacterial pneumonia.
I woke up on Monday morning feeling pretty bad. I had expected to be a little under the weather because of the numerous festivities over the holiday weekend.
I did the dinner on Thursday with the family; then a post holiday dinner party with friends on Friday; and on Saturday night I went to check out a friend's band. On Sunday, I had dinner with my aunt and uncle and watched the Pats game - a very exciting game against the Chicago Bears.
Between all of those engagements, I rested and took my appropriate medications. I thought at the worst I might have to hunker down all Monday and see where I stood by Tuesday.
I never got that chance.
By mid-day Monday, I had a border-line high grade fever of 102.5 F. After I called and reported this to the nurse at my doctor's office, she said I had to go down to the ER immediately. My aunt drove me down from West Tisbury to the hospital in Oak Bluffs, which is about a fifteen minute drive.
When the triage nurse at the ER took my temp, it had risen to 103.4 F, which was nearly a one degree rise in temp in about 20 minutes. They rushed to get an IV of Saline Solution in me because I was severely dehydrated. They also took some blood.
By this time I could barely hold my eyes open and it all felt a little surreal. When your body begins to cook at a high-grade fever temperature, your brain goes into a melt-down. I kept repeating things and couldn't remember what I had told people minutes before. All efforts to talk and rationalize seem overwhelming.
After a second IV bag and some super-duper meds given intravenously to break the fever, I started feeling a little better. According to the ER nurse, the blood tests still showed possible signs of Lyme, but the white blood cell count was normal, showing no signs of bacterial infection in the blood - Thank God. They did not re-check for Mono because once you're diagnosed there is no medical treatment and you have it and need to just let it run its course.
The ER doctor said she heard through her stethoscope crackling in the lower right lobe of my lung. That, coupled with the high-grade fever and dehydration, allowed her to make the diagnosis of bacterial pneumonia.
She prescribed Zithromax, a strong antibiotic used to treat infections caused by bacteria. According to my discharge instructions, Zithromax kills bacteria or prevents it from growing inside your body.
I also was prescribed Vicodin, for pain management and fever busting. The well known painkiller is made up of hydrocodone and Acetaminophen (Tylenol). The Acetaminophen along with being a pain reliever is also good at breaking fever.
Today, my fever is back to normal. I still have aches and pains, especially in my lungs and upper back from the severe coughing over the last 24 hours. I have noticed some blood in the stuff coming up from the lungs (sputum).
I have an emergency appointment with my primary care physician tomorrow at 4 PM. Among other things, I will ask my doctor how I got here from being diagnosed with Lyme, to mononucleosis, to pneumonia. Stay tuned.
Tuesday November 21, 2006, 1:00PM
The Waiting Game
I'm in the hospital parking lot writing on my laptop in my Toyota Four Runner. I just went to the lab and got my follow-up blood tests to see what impact the antibiotics have had on the Lyme antibodies found in my blood over a month ago. The tests will also see if I still have mononucleosis as well.
It seems I will have to wait a few days before my doctor takes a look at the results, because of the Thanksgiving holiday. The office nurse, Karen, just told me to go to the ER if any of my symptoms get worse. She said to keep an eye on a cough that I've had for the last week or so. "Tell them you have mono, and have been treated for Lyme," Karen said.
3:00 PM:
After driving all the way home to West Tisbury and talking to family members, I decided I should drive back to the ER and have the cough looked at. I have been coughing less thanks to a couple of sips every few hours of Robitussin Cold and Flu, but my chest has started aching over the last few days. It has gotten so bad that it wakes me at night. After discussing this with family members, and at their urging, I thought it would make sense to go down to the ER before the Island gets packed with Holiday feasters.
The Martha's Vineyard ER has just eight beds. It is notorious for its long waits. I've covered the problems at the ER for the Cape Cod Times and WCAI. That's one of the reasons I first decided not to go to the ER earlier in the day. I didn't have the energy to wait and go through the whole rigamarole of registering etc.
As luck would have it, it appeared to be the quiet before the storm. I heard the triage nurse say it was all quiet before the holiday rush.
Over the years, the Island has become more and more popular during the holiday season as more people who own summer homes decide to come and warm up their homes for the holidays. You know, get away from New York, or whereever, and enjoy the bucolic surroundings of the off-season Island.
Because of this new found holiday popularity, the ER -- like four-corners, the blinking light intersection and the ferry terminals -- gets jammed.
But, thanks to my family's urging and prodding, my decision to come today and not wait another day has saved me from a busy ER.
I rushed through registration, waiting room, triage and doctor's evaluation in under an hour. I just got a chest x-ray and am waiting for the results. It's 4:00 PM.
4:35 PM:
X-ray was normal. No signs of pneumonia, which sometimes can come with mono, something called mono-pneumonia the ER doctor said. I was diagnosed with bronchitis. I was prescribed Robitussin with Codeine and a Combivent inhaler of ipratropium and Albuterol. The ER Doc said with my earlier diagnoses of Lyme and mono I need to rest a bit more to let my immune system heal.
5:30 PM:
I am home now. I plan to rest more than I have been. When I start to feel better, I won't jump back into normal routine as I have been doing for the past couple of weeks. Every time I do that, I seem to get knocked back a few days with exhaustion and flu-like symptoms.
Tomorrow, I plan to start a multivitamin treatment for Lyme. I should have my blood tests results in a few days. While the waiting game continues, I'll be resting on my couch on the sidelines and writing my blog. Stay Tuned.
Monday November 20, 2006, AM
More on natural treatments
In this entry I will continue evaluating some alternative healing treatments I am looking at to follow up my now completed antibiotic regimen of Doxycycline.
Most but not all of the natural healing methods are chronic Lyme disease, which can happen if the infection goes undetected (for instance if there is no rash) or if the patient doesn't respond to antibiotic treatment.
I should note that I didn't have a rash and have just wrapped up my antibiotic treatment. I am still feeling out of it, but think it may be the lingering effects of the mononucleosis.
Conventional doctors may prescribe an intravenous antibiotic for two to four weeks or a prolonged course of oral antibiotics. The alternative folks recommend a number of treatments, because of significant side effects prolonged antibiotics can cause.
Alternative healing guru Dr. Andrew Weil provides a number of alternative treatments on his website. He points people to Chinese traditional and modern medicine treatments. He has referred patients to Qingcai Zhang - a Chinese trained MD in New York City who specializes in chronic infectious diseases.
Zhang, according to Dr. Weil, uses anti-microbial herbs that act against B. Burgdorferi and other tick borne bacteria.
Alternative healers believe that many Lyme symptoms are often caused by infection by multiple organisms, which aren't always addressed by antibiotic drugs. Herbs are also used to strengthen immunity, reduce inflammation, ease joint pain, improve fatigue, and enhance brain function, depending, of course, on the patient's symptoms.
Some people have mentioned the use of acupuncture to manage and regulate pain as well.
Weil reports that Zhang's treatments have gotten impressive results: After six months or more daily herbal treatment, at last 60 percent of his patients with chronic Lyme were symptom-free and more than 80 percent improved.
I may inquire about the treatments provided by Zhang after I consult my doctor. My next move is to wait 6 more days and do another run of blood tests to see what things look like. If there are still some Lyme apparent in the samples than we may look at the intravenous antibiotic treatment coupled with some of these natural treatments.
Next I will look at my condition over the first 48 hour or so after finishing my antibiotic treatment. Stay Tuned.
Martha's Vineyard is world renowned for its liberal politics and progressive thinking. And, when it comes to life all around, not surprisingly, it is flourishing with alternative efforts to treat Lyme disease.
A number of people have come up to me at Alley's General Store in West Tisbury or on Main Street in Vineyard Haven asking how far I am in my antibiotics treatment - 20 and counting - and if I am doing anything else in my recovery process outside of the standard medical treatment.
They then quickly recommend alternative remedies that should try after the antibiotics, ranging from diet changes, whole body cleansing routines and herbal remedies.
As I near the end of my 21 day antibiotics regimen I thought over the coming days I would write about some of the alternative types of treatment out there on the web and also talk to some Lyme disease patients who have tried these types of remedies.
Alternative recommendation
One example of an alternative remedy regimen comes from the alternative medicine website curezone.com. It recommends "a Lyme Disease Prevention and/or Curing Protocol," which includes lifestyle change, and implements healthy diet, body cleansing, exercises and different traditional and natural therapies.
The diet should include one low on toxins, certain fats and vegetable juices and water.
According to CureZone.com, body cleansing is also an important part of the process as well. The recommended body cleansing remedy includes bowel cleanse with parasite cleanse (Yikes!), a dental cleanse, a kidney and liver cleanse.
I plan to consult my doctor first before I start down the alternative remedy path. I recommend anyone interested in taking this path of treatment should also consult their doctor first.
My next entry will include more specific alternative treatments for Lyme recovery and I promise to stay away from mentioning a bowel cleansing in any form or fashion. Stay tuned.
Sunday November 12, 2006
Over the past week I have been trying to find out how I could be hit by mononucleosis while recovering from Lyme.
Just the other day I ran into a friend who is a longtime landscaper. She said one of the times she has had Lyme, she also got mono. I found another case like mine. I began to research online how frequently Lyme patients are struck with secondary illnesses and why.
Although most people infected by Lyme disease will suffer from symptoms caused by the bacteria -- fatigue, aches and pains in joints and flu-like symptoms -- a small number will go on to develop secondary illness or complications from Lyme disease. According to an article written by Dietrich K. Klinghardt, M.D., Ph.D., of the Institute of Neurobiology in Bellvue, WA, some cases of Lyme disease can cause immune system weakening or failure causing all known secondary illnesses such as herpes, virus infection, intestinal parasites, or malaise.
My doctor says that it is possible my weakened immune system may have allowed me to acquire a secondary infection of mononucleosis.
Infectious mononucleosis (mono), or glandular fever, is often called the kissing disease. The label is only partly true. According to the information on the disease on the Mayo Clinic web site, the virus that causes this disease is transmitted through saliva, so kissing can spread the virus, but so can coughing, sneezing, or sharing a glass or food utensil.
Mononucleosis isn't as contagious as some other infections, such as the common cold. Because of the contagiousness of mono, it is likely that I caught mono drinking from the same container by someone infected with mono or being around someone who transmitted the disease by coughing or sneezing. I think one of these is the most likely since I am currently not dating and have not necked with anyone in over... Let's just say it's been awhile.
As noted in one of my earlier blog entries, there is no real treatment for mono and the antibiotics I am taking for the Lyme have no effect on mono because it is a virus -- Epstein Barr -- instead of a bacterium.
For my next entry I will be looking at natural treatments for Lyme disease. Stay tuned.
Tuesday November 7, 2006, PM
One of the hardest struggles I've experienced so far while recovering from Lyme and, more recently, mono nucleolus is fending off the emotional downturns that occur. The lowest points come when I am unable to garner enough energy to do things I want to get done during the day, or night. I've also had some bouts of insomnia. This is ironic because of the lack of energy I feel during the day. It then doubles the lack of energy I have the next day, compounding my exhaustion.
I'm not alone.
According to a recent study -- Health Conditions and Health Status Report of Martha's Vineyard -- the high rate of Lyme disease -- a tick-born illness -- and depression cases on the island are connected.
A history of diagnosed depression is associated with Lyme disease, according to the report. People with a history of diagnosed Lyme disease were almost twice as likely to have a history of depression.
The report stated that Lyme disease is associated with depression on the Island, although the conclusion has to be examined more extensively in a long-term, population- based study where people can be followed regularly after they had a case of Lyme disease.
"Unfortunately, the results only leave us knowing that depression is associated with a history of Lyme disease, but does not tell us which came first," the authors of the study wrote.
I spoke with one of the authors of the study when I did my story on the report for the Cape Cod Times in September.
Dr. Diane Becker said there is still a lot of research needed to further understand how and why there is a connection between Lyme disease.
"We still don't know why there is a connection," she said. "Lyme does affect the brain and we would look at that in the future. We don't know if the effects on the brain are chronic."
Hopefully they're not.
As I said, the lowest points for me so far have been when I was unable to get out, get some work done on stories, or join friends for lunch or even dinner. Productive mornings have been nearly erased from my schedule.
After taking my morning antibiotics, I have to lie down and wait for the usual dizzy spells and nausea to subside before getting up and moving on with the day. My doctor said nausea is an unfortunate side effect of the Doxycycline.
With the recent diagnosis of mono, comes the real lack of energy. In fact, after I explained my symptoms to my doctor last week she insisted on getting a mono test, which came back positive.
I hope it won't lead to darker emotional days going forward. We'll have to see. And despite some dizziness earlier this election day, I did get down in the polls and vote. If I can do it, you can. Don't forget to vote and stay tuned.
Friday November 3, 2006, evening
If it doesn't rain it pours. I hate using cliches like that. But in my case it fits. I just got off the phone with my doctor, Ellen McMahon. After a follow-up visit with her yesterday and a subsequent blood test, she told me my most recent test came back positive for mono. So on top of the Lyme antibodies found in my blood last week I now have a mono condition I have to deal with.
My treatment regimen will not change. I am staying on the Doxycycline for another week or so for the Lyme and I will have to wait for the mono to run its course as well.
McMahon said we will repeat my Lyme test after antibiotics run out and see what has changed. She said it is most likely I caught the Lyme in its early stages and will not have any long range problems, like arthritis, bells palsy and more serious neurological symptoms.
"I want to track it after the antibiotics have run their course?" she said in the exam room at Martha's Vineyard Hospital on Thursday.
She decided to test me for mono after I told her my symptoms over the past week: aches and pains in joints, constant runny nose and cough, as well as headaches and exhaustion. A lot of those symptoms do occur with Lyme, but she thought they also could be mono.
In upcoming entries I will try and find research on Lyme related to other illnesses that may occur during the onset of infection. Is there a link between the two? Can people sick with Lyme be more exposed to get other illnesses? Stay tuned.
Wednesday November 1, 2006
As a contributor to WCAI and the Cape Cod Times I have covered the impact of Lyme disease on Martha's Vineyard for a few years now. The disease has a long history on the island. Being a resident of Martha's Vineyard since childhood, I am well aware of the dos and don'ts of working and playing in the woods and grasslands of the island.
That's why a letter from my doctor last week informing me of the discovery of antibodies consistent with Lyme disease in recent blood tests came as such a shock. And it's not as though I am an avid outdoors man. I am not a landscaper, gardener, or hiker. Thanks to a severe car accident I suffered in 2002 I am limited in my ability to trudge through the bush, or saunter down a forest path.< br>
The interesting thing is that my post accident condition may have prevented me from noticing the early signs and symptoms of Lyme in the first place. Lyme disease in its early stages causes flu-like symptoms and, if left untreated, may cause a variety of neurological and arthritic conditions. Thanks to my post-car accident aches and pains, I think I may have written-off early Lyme symptoms as just instances of over extending my compromised bones. As I look back, over the past three months or so, my energy level has declined. I have had Iritis (inflammation of the eye) in my left eye for six months, which caused my eye doctor and physician to check for Lyme in the first place. I have also had a number of bouts with bronchitis over the past year.
Just because my doctor found antibodies in my blood it does not mean they can tell when or how I got infected. This speaks to the larger issue of diagnosing and treating Lyme. Debate amongst doctors and patients exists on finding better ways to diagnose and treat the disease.
Lyme Disease Background
According to reporting by me and my colleagues at the Cape Cod Times, the Cape and Islands have the highest Lyme disease rates in the country. Ten percent of all cases in the state last year were in Barnstable County.
According to a recent study, on the Vineyard, Lyme disease cases have risen dramatically since a 2003 survey that found more than twelve percent of full-time - and seven percent of part-time residents - had reported a tick-borne disease during their lifetime.
For full-time island residents, the numbers of Lyme disease cases are triple the statewide rate. For part-time residents, the numbers are nearly double those across the state.
The same study found that people diagnosed with Lyme disease were almost twice as likely to have a history of depression.
The report found that up-island residents (West Tisbury, Chilmark and Aquinnah) were almost five times as likely as down-island (Vineyard Haven, Oak Bluffs and Edgartown) residents to have contracted the illness, with more than one-third of year-round Chilmark and West Tisbury residents having reported tick-borne diseases.
Treatment
It feels like a twenty-four hour hangover. Almost every morning I wake up I feel as though I haven't gotten a full night's sleep. I also have a lingering running nose and sneeze that has slowed some since I started my antibiotics regimen, but hasn't fully gone away.
After the blood tests, my doctor decided to put me on the standard three week antibiotics treatment after I told her about my lingering cold, and low amounts of energy.
According to reports in the Cape Cod Times, there is currently a bill before the Massachusetts legislature that would protect doctors who prescribe long-term antibiotics for the tick- borne disease, a treatment popular among patients but controversial in the medical community and insurance industry.
My doctor, Ellen McMahon, M.D. prescribed Doxycyline. I have to take 1 100 milligram tablet twice daily on an empty stomach. After a week of antibiotics, I have had more of my mornings back. I can make breakfast, get out and do a few errands before my energy wanes and I have to lie down and rest.
I have a follow-up with my doctor on Thursday to see where we go from here. Stay tuned.
Reporter Erich Luening:
