The Lyme Roller Coaster

It's been a few weeks since I've posted and I thought I would give an update. So much has happened in such as small time frame. First, my internal medicine physician who diagnosed me, has now diagnosed well over 30 patients IN ARKANSAS with Lyme Disease! His nurse tells me that there are times when they are diagnosing 3-5 new cases of Lyme Disease in ONE day! This is because my doctor has become well aware of symptoms of Lyme and is re-evaluating many of his patients. He now keeps an ample supply of IGenex lab kits in his office and has become proficient in making diagnosis based on clinical symptoms and supportive lab after ruling out other potential causes. He has now diagnosed two of his own staff members!

For me, I have had good days and bad days. The typical roller coaster of Lyme as I like to call it. On my good days, my arthritis pain is next to nothing, I have a lot of energy and feel like my old self. My bad days seemed to have changed. New symptoms have emerged......this past month, I have developed nausea (which I am sure is from the oral antibiotics),  terrible headaches, vision changes and horrible pain when I breath in. The pain fells like what I would think pneumonia would feel like and would be worse when I would breath in cold air. I complained of this last month and my doctor felt I had pleurisy. This is an inflammation of the lining of the lungs and would be another symptom of Lyme. In general, Lyme Disease causes a host of inflammatory responses in the body. Hence, arthritis and pleurisy as just 2 examples.  I guess a visit to the optometrist will be on my schedule. My arthritis still comes and goes and has taken a back seat to my headaches and nausea, but my overall energy level, although, improved from last month, is still not good. I have not felt like exercising but at least get about a 45 minute walk in most days. As far as my bike riding, I think I've been on my bike maybe twice. My bike group, the Mello Velo's are hitting the road hard and heavy beginning their spring time training to gear up for all the bike rides this summer. This has been really hard on me....to sit back and watch them go on about their fun times and I cant participate because I just do not have the stamina and am told that aerobic exercise is not really good because it can actually lower and knock down the immune system several days after. I'm sure if you have LD, you totally understand! If you don't have Lyme, then the best way I can describe it is that it's a feeling of total isolation. It can be extremely depressing but overall, I have managed to not let it get the best of me. I have resolved to stepping down from my bike team for a year or two in order to get my Lyme Disease treated and under control. I have every intention of getting back on my bike and riding with the group as if this had never happened to me and I look forward to that day!

IF YOU ARE ON DOXYCYCLINE, THE SUN IS NOT YOUR FRIEND!
I had a very fun day at the Jimmy Buffet concert here in Arkansas but despite my efforts to protect my skin from the sun, both my nose and my lips got blistered. It's not the usual kind of sunburn you would think of. It's more of a destructive searing of your skin. Not good! My nose still doesn't look good and I hope that I haven't permanently damaged the skin! So, if  you are taking Doxycycline or one of the sun sensitive antibiotics make sure you take this very seriously. I also had my share of margarita's at the concert. a Lyme NO NO! I have for the most part totally avoided alcohol but just couldn't resist. I had SO much fun that day! But, I did pay the price. I felt horrible for at least a week after but sometimes you just have to live life!

I had my routine one month Lyme follow up with my doctor last week. Okay, here's something very funny that I know all you Lymies will totally understand. When my doctor came into my room he had a lady intern who was working with him that day. When he introduced me he said "Tracy, this is doctor "x" and she is engaged to an Infectious Disease doctor!" He went on to say that she had been "inundated with Lyme patients today". She looked like a deer caught in the headlights and I just wondered how her dinner with her fiance was going to go that night! For those of you who do not have Lyme, the political issues behind Chronic Lyme Disease and the ability or lack of ability for those of us with it to receive medical care stems from the outdated and inappropriate IDSA (Infectious Disease Society of America) guidelines related to Lyme Disease. Infectious Disease physicians do not believe Chronic Lyme exists and feel that a short 2-4 week course of antibiotics is all anyone with Lyme Disease needs to cure them of the organism.

I would like to share a thought. I am sure that many of those who have LD have had this exact same thought at one time or another.

When I started on this long road of Lyme recovery, my symptoms were severe arthritis pain in all joints of both hands and feet, some fatigue and memory fog. Now, 5 months into the treatment, although my arthritis is 95% improved, I have so many more symptoms. Headache, pleurisy, fibromyalgia, nausea on top of the others. I have done a tremendous amount of research and believe I am doing the right thing. But, because the IDSA and the CDC does not recognized Chronic Lyme Disease, I can't help (on some days) to question if I am doing the right thing by taking these long term antibiotics! I am a nurse and have a full understanding about antibiotic resistance and what the impact of taking antibiotics long term can do to the body. It's the ol chicken before the egg question. Is my Lyme Disease causing all these symptoms or could the treatment be causing them? I would not be honest if I didnt share that I have had these thoughts. I think it's only normal. But, I can tell you in the end, I DO believe I am doing the right thing! I also have expanded my research into possible herbal therapies. This is getting WAY OUT THERE for a healthcare professional. But I can say, that, for me......I believe there will be a place for BOTH traditional medicine and herbal therapies in my treatment plan. At some point, I will come off of antibiotics and transition onto herbal therapy. I just haven't decided when that will be yet. I do value my physicians input but we are doing this together and in the end, I must feel good about my treatment. I purchased Dr. Stephen Buhner's book Healing Lyme. Dr. Buhner is to herbal medicine what Dr. Burrascono is to traditional medicine when it comes to treating Lyme Disease. I will talk more about herbal therapy later. But I highly recommend you consider this when making decisions regarding your therapy and Dr. Buhner's book is a good read!

Treatment Plan: My physician and I felt as though it was time to change my antibiotics. This is often done to keep the organism from becoming resistant. I will now be getting off of the Doxy and Cefdinir and will begin taking Azythromax, Cefin and Fagyl. Because I tested positive for Mycoplasma Pneumonia and because of my respiratory symptoms, the change to Azythromax was determined just in case the Mycoplasma organism was the cause. My chest xray was primarily negative showing some mild effusions. Azythromax would not only treat the cell wall deficit form of the Borrelia but also treat the Mycoplasma Pneumonia. Based on Dr. Burrascono's latest presentation at the 2011 International Lyme Conference, we decided that instead of taking the antibiotics 7 days a week that I would "pulse" the therapy.  I will take the Azythromax and Ceftin 3 days on and 4 days off and for the Flagyl, I will take it 2 weeks on and 2 weeks off because of it's long half life. This will help keep the organism confused and prevent it from changing forms and adapting to avoid the aggressors (the antibiotics) and also decrease the potential harmful side effects to my body. So far so good on all my labwork. Kidneys, liver function, CBC and thyroid all normal. My CD57, was 26 is now up to 48. This needs to be well over 120 before therapy can be stopped or a relapse will occur. CD57 is an indicator of how well your immune system is working and is very specific to the Borrelia organism. It is a measurement of  Killer T cells which are the cells of the immune system which fight off bacteria / infections in the body.

To close today's blog:
The Lyme organism, Borrelia Burgdorferi is often referred to as "The Great Immatator" because of its ability to adapt and change its form in order to survive in the body. It deeply penetrates organs and tissues instead of remaining in the bloodstream and it is believed by Lyme specialists that it is impossble to complete erradicate. It can be fatal. This is why I have chosen to use both antibiotics and herbal therapies for my treatment plan. There are some who have been able to completely control their LD with herbal therapies only and I do not dispute this. But for me, my approach will be integrative with both traditional medicine and herbal therapy. In the end, there is no written protocol, no one telling the physicians or patients how to do this and it really is and can be done a variety of ways. A person must choose the therapy that makes sense to them and that they feel good about. I wish all my Lymies healing, especially my dear friend's husband, Eric. My prayers are with us all!

Get Your Facts Straight People!

TICKS IN ARKANSAS

(The following information was taken from the Arkansas Department of Health website)

According to the CDC these are possible ticks that could be in Arkansas (http://www.cdc.gov/ticks/geographic_distribution.html)

 American Dog Tick (Dermacentor variabilis) – mostly spreads Rickettsia rickettsii, which causes Rocky Mountain spotted fever. It can also spread tularemia. These ticks like to feed on dogs and other medium sized mammals, but the will also feed on humans.

 Blacklegged Tick (deer tick) (Ixodes scapularis) – spreads anaplasmosis. Can spread Lyme disease in parts of the country, but they do not feed on infected animals (rodents) in Arkansas, which is why there isn’t Lyme disease in Arkansas. Adults feed on large animals and will sometimes feed on humans. 

 Brown Dog Tick (Rhipicephalus sanguineus) – spreads Rocky Mountain spotted fever in Arkansas. Dogs are the main host for these ticks.

Lone Star Tick (Amblyomma maculatum) – can spread ehrlichiosis and tularemia and STARI. The white-tailed deer is the main host for these ticks.
 For the life of me, I cannot understand WHY the Arkansas Department of Health website clearly identifies possible ticks which could be in Arkansas, listing the Blacklegged Tick (deer tick) as a tick which can spread Lyme Disease and do feed on adult humans and then states that because they do not feed on infected animals (i.e., rodents) in Arkansas (they do feed on infected rodents elsewhere though!) this is why there isn't Lyme Disease in Arkansas.

WHAT DID I JUST READ????????  Then how can one explain the following chart. (which, by the way, was also taken directly from the Arkansas Department of Health website)

Am I seeing things? Or does the chart clearly show that in years 2001, 2002, 2004, 2005, 2006 and 2007 there were a TOTAL OF 30 REPORTED CASES OF LYME DISEASE IN ARKANSAS!

One might ask (I know I did) WHY is it that suddenly in 2008 to current date there are NO REPORTED CASES OF LYME DISEASE IN ARKANSAS? Did the ticks just decide that they didn't like the scenery in Arkansas anymore? Did they find a more exciting place to hang out? Yep, it appears they just packed their bags and went elsewhere! Right?......WRONG!  I will give you a hint.........

I called and spoke with the Arkansas Department of Health today and asked this very question. The gentleman, of course, could not answer my question but did tell me that in 2011 there were 14 cases of "NEW" Lyme Disease reported but that none of them met the CDC criteria for diagnosis. And that so far in 2012 there has been one case of "NEW" Lyme Disease reported and it did not meet the CDC criteria for diagnosis. In case you were wondering what "NEW" meant, this means that the person presented to their doctor with a known tick bite AND Erythema Migrans rash AND had laboratory results which met the CDC criteria. So, keep in mind that none of the reported cases includes people such as myself who had no EM rash and  presented to their doctor later after they began having a variety of symptoms. But still, WHY, are there no reported cases after 2008? I have my ideas......but will do a little more research on this and get back to you!

How can the CDC, the IDSA and the Arkansas Department of Health say there is NO LYME IN ARKANSAS when their own data states otherwise?

 

The Many Faces of Lyme

ILADS LymeWall - Photos of People with Lyme Disease

Thought for the Day!

Last visit my doctor talked me into taking a B12 injection because my energy level was so low. I also started an oral supplement called NT Factor. B12 is a water-soluble vitamin found in many foods and often taken as a supplement to help boost energy and improve mood and memory. NT Factor is a supplement that helps to repair the cell wall membranes so that they can better absorb nutrients which, in turn, would allow the cells to produce more energy to the body. WOW!!!! Both of them seem to really be working for me. By the next day, I had so much more energy. I actually felt like a new person. I got all dolled-up and went out on a date with my husband on several different nights! Being water-soluble the B12 injections do not last very long in the body so the fact that I am continuing to feel more energetic tells me the NT Factor is also working. I'm such a stubborn girl.....I almost rejected the injection thinking that I did not want to "cover up" my symptoms in anyway. After all, how can I properly evaluate my medical therapy if I mask my symptoms with a "feel good shot". A big thank you to my doctor for convincing me to quit being so stubborn and to accept the help the vitamins and supplements may can give me while undergoing my medical management. There will be PLENTY of time to evaluate the effectiveness of my therapy. In the mean time, there is no need to feel SO TIRED that I don't even want to get dressed and brush my hair!

NO, this is NOT a picture of the Borrelia Burgdorferi organism!  This is a picture of the pills that I have to take on a daily basis to kill it!

So, my thought for day is:

You DON'T want Lyme Disease! 

Please take precautions if you are going to be outdoors and inspect your and your family members body closely for ticks. If you ever get the classic Bull's Eye Rash, seek immediate antibiotic treatment from your doctor. BUT.....even if you get bit by a tick and have NO RASH what-so-ever, go to the doctor and ask for a ONE TIME dose of antibiotics.

Don't let anyone tell you that there is NO LYME DISEASE in ARKANSAS! It IS here in full force!!!!!! 

A POSITIVE DIAGNSOSIS!

In early February I received a call from my doctor's nurse stating that my Western Blot test from Igenex had come back positive and that I needed to come for an appointment. Just a reminder that my previous Western Blot test from Labcorp was negative showing no IgM antibodies (which shows active infection) and only 1 IgG antibody (which is indicative of previous exposure).

My Igenex result was POSITIVE! Showing 2 IgM antibodies and 3 IgG antibodies. Based on my clinical signs and symptoms and the lab, my physician has now officially diagnosed me with Lyme Disease!

We discussed my options and the idea of being referred to a Lyme Specialist (LLMD), the closest of which was in Missouri. And my physician was sure to inform me that although he did have some knowledge of Lyme Diseases, he had no direct experience in treating the disease and that he has previously referred several of his patients to the specialist. Based on the research I had done, I felt "fairly" confident in what my course of medical therapy should be and we discussed this openly. Because of the distance involved in traveling to see the specialist, along with the fact that Lyme Specialist do not accept insurance due to the politics and controversy that Chronic Lyme does not exist, he "cautiously" agreed to continue to treat me with some reservation and concern for his practice. (We both know that many physicians have lost their medical license over choosing to treat Chronic Lyme with long term antibiotics.) We will take this one day at a time and cross that road if necessary! I pray for both of us that doesn't happen.
I had already been on Doxyclycline 100mg twice a day for 2 months and although my arthritis symptoms had improved other symptoms such as muscle aches, chronic fatigue and memory fog had worsened. All information indicated this dosage was not high enough to kill the organism in the blood and tissue. The recommended dosages of Doxycline to treat Lyme is 400-600mg / day. We decided that I would increase my dosage to 400mg daily and, in addition, he added a cephalosporin antibiotic called Cefdinir. With both of these medications we would now be attacking both the spirochete (in the blood and tissues) form of the organism and the L-form (inside the cells). After a few weeks, if I tolerate both of these, we will add the third and final group of antibiotics.....Flagyl.....the "cyst buster". It takes ALL 3 groups of antibiotics to kill the 3 different forms of the organism! If you dont treat all forms, the organism simply transforms itself and moves into a space where the antibiotic is not effective. And then when the antibiotic is stopped, it changes back to bring havoc to the body once again!

I am relieved that I am FINALLY on a treatment plan after 14 months of uncertainty! I still have not forgotten about my reaction to the H1N1 flu vaccine and how this has played a role in me getting Lyme Disease. My research on this continues on!

January 2012 - Research Overview

Classic Erythema Migrans (EM) rash. AKA "Bulls Eye" rash.

Over the past month I have poured myself into researching Lyme Disease. The more I researched, the more confused, angry and scared I became. I have learned that for whatever reasons (many can be speculated) our government, political community, insurance and pharma industries do not want to admit that Chronic Lyme Disease exists despite research, peer reviewed articles and clinical practice that prove otherwise. Instead, they refer to it as Post Lyme Disease Syndrome and state that only 10 - 20% of people treated with antibiotics for 2-4 weeks will have these lingering symptoms which is NOT believed to be a result of the continued presence of the Borrelia Burgdorferi organism.  Let's not forget that these comments are based on the theory that people who have been bitten by an infectious tick get immediate treatment. The CDCs states that 70 - 80% of people infected with the Lyme organism develop the Bulls Eye rash called Erythema Migrans (EM) whereas the Lyme Specialist and ILADS organization believe that this only occurs about 50% of the time (if that much) and that many are not even aware they have been bitten by a tick at all! The reason for this huge discrepancy is based on the the different beliefs in what the diagnostic criteria should be and the CDCs more stringent guidelines for diagnosis obviously results in fewer cases being reported. Click here to read ILADS position statement.

And hence, the battle of making medical therapy treatment available and a covered insurance benefit!

I have learned that, unfortunately, many physicians who believe that Chronic Lyme does exist and who have chosen to treat their patients (with great success) have been scrutinized and ostracized by their peers within the medical community and have actually gone on to have their medical license revoked leaving the physicians without a practice and hundreds and hundreds of people without access to the medical care and treatment necessary to overcome the disease!

I don't know if I should cry or scream. Actually, I've done both!

I have also learned that the standard laboratories such as Labcorp, Quest, etc have a very high incidence of false negatives for the Western Blot and ELISA tests. Here is a link that I feel does a good job of describing why the testing is so unreliable. (canlyme.com). There are just a few laboratories within the United States that specialize in tick-borne diseases. Igenex and Clongen are both reputable laboratories used by Lyme Specialists (LLMD- Lyme Literate MDs). Unfortunately, they do not accept insurance and these tests can be expensive. And, although they have a much higher percentage of overall accuracy, they too can fall short of detecting the antibody bands in this complex disease process. If you are going to be tested for Lyme Disease, don't waste your time on getting the test done through your local lab. You MUST use one of the labs which specialize in tick-borne diseases.

I am ready to ask my doctor to repeat my Western Blot test through Igenex!

This is getting technical....so do I or don't I have Lyme Disease?

A week or so later I was phoned by the doctor's office to tell me that all my Rheumatoid labs were negative and that my Western Blot test showed "some indication of Lyme" and my doctor wanted to see me in the office. I was SHOCKED!

The CDCs (Center for Disease Control and Prevention) website states that "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics."

Based on the CDC guidelines, the diagnoses of Lyme Disease is a clinical diagnosis and can be supported by a Two Step Laboratory Testing Process. A positive ELISA (enzyme-linked immunosorbent assay) antibody screening test and a positive Western Blot test when 5 out of the 10 Borrelia Burgdorferi (Bb) antibody bands are present.

Because of my love for camping and other outdoor activities, I have definitely been bitten by many ticks over the years but never a Bulls Eye rash. I definitely had the symptoms: arthritis, fatigue, muscle aches and pains, brain fog, insomnia. My ELISA screening test was NEGATIVE and I only had ONE positive band of the 10 Bb antibodies on the Western Blot. Because I had watched the suggested documentary "Under Our Skin" I learned the politics involved with the current diagnostic criteria and that many people who, in fact, have Lyme Disease do not ever have the classic Bulls Eye rash nor do they test positive for 5 out of the 10 Bb antibodies! Also people all over the US have contracted Lyme and it's not just found in the Northeast and upper Midwest as some would like to believe. As stated on ILADS (International Lyme and Associated Diseases Society) website: "Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual." And, to top it off..... main stream medicine does not even acknowledge that Chronic Lyme Disease exists despite the many suffering people who have responded positively to the treatment!

Based on clinical findings, my physician felt strongly that I had Lyme Disease and started me on Doxycycline 100mg twice a day and told me to eat a low carb/gluten free diet and to return in a month for evaluation.

I'VE NEVER BEEN SO CONFUSED! What about the H1N1 vaccine reaction?????  Now, I'm getting scared and have SO much more research to do!