For those of you who haven't read my previous blog post, I am currently in my second year of overall treatment (I was on abx for a little over a year, took six months off as symptoms had subsided, and then began antibiotic treatment again in January after symptoms had come back and I tested positive for Bartonella).
At first, my LLMD put me on Doxy, Rifampin, Azythromycin, and Mepron. After he took some follow-up bloodwork several weeks later and found that my liver enzymes were elevated, he switched me to Clindamycin, Tindazole, and Malarone. He also added Cymbalta (40 mg/day) to my regimen as the panic attacks had become frequent and I was tired of spot-treating them with Xanax. Although I had (and still have tremendous reservations) about taking something preventative like Cymbalta, I will say it has completely eliminated my panic attacks.
Around March of this year, I began to have acute upper-abdominal pain. Knowing that my liver enzymes were high, I feared gall bladder complications from all the meds, and so immediately stopped taking the abx and saw my PCP. She scheduled abdominal and pelvic utlrasounds and sent me for bloodwork. By this time, because the liver has so many self-healing properties, my enzymes had returned to normal (confirming the abx treatment as the cause) and, thankfully, the ultrasounds showed no abnormalities. Fearing the Bartonella running rampant in my brain, I began the abx once again for a few weeks. The acute pain became worse and spread throughout my abdomen, so I (again) stopped taking them, and have not been on them since.
I HAVE been taking - and this is super important to note for anyone looking for immune support - 10,000 ius of Vitamin D a day, as well as Phytosterol, Skullcap, and S.A.T. I see Dr. Petrowski in Timonium, MD. She is a biotixin specialist who does lots of testing and is incredibly helpful in dealing with the natural/immunity side of things. I initially started seeing her after I had been exposed to black toxic mold so I could get some help processing all the neurotoxins, but she frequently treats patients with infectious diseases so that she can support our bodies as we endure the toxins released during the die-off process. After extensive testing, she showed me the bloodwork that let her know that my hypothalamus is pretty much non-functioning after all of the toxins in my body have had a chance to run wild. For the last several weeks, other than the abdominal pain, I had been feeling like SUPERWOMAN. My strength was back, I had mental clarity, I was working out again, and felt like 100% was just around the corner if I could get myself off of Cymbalta. But last Thursday, things took a sour turn.
I woke up sick to my stomach and had diarrhea for the next five days. I was in South Carolina for a friend's wedding and so decided just to tough it out with Immodium and stay hydrated until I got home. This Sunday I went to Patient First where they clinically diagnosed me with C-Diff and sent a stool sample out for confirmation (it was confirmed a couple days later). I was taking Flagyl for the bacteria and Bentyl (an anti-spasmodic, I think?) for the pain, but four days later, my arm broke out in hives, so I stopped taking both. The next day, before I'd had a chance to call the doctor to let them know, my throat closed up for a moment after eating lunch. It was very brief; I couldn't breathe in or swallow for a few seconds, and then it opened again and I could breathe just fine. And then my throat and tongue became extraordinarily dry and irritated.
Let me first say that I don't have any known food allergies (only lactose intolerance and a mild gluten intolerance). Also, I have a hiatal hernia for which I take Prilosec OTC 2x a day (diagnosed years before the Lyme), and I believe I've been having esophageal spasms for the last six months. Feels like your heart is fluttering, or a fish is stuck in your chest. But because I had had a reaction to the abx the day before, I became concerned about anaphylaxis, and asked our school nurse for some advice (I teach at a small school). The nurse informed me that people can have latent reactions (although I found out later that it's extremely unlikely to have an anaphylactic reaction that much later) and she wanted to administer epinephrine. I was like... um... no thanks, I'll just go to the E.R. They didn't perceive me to be in any immediate danger, but gave me steroids and Benadryl just in case, and kept me to monitor me and administer fluids. A chest X-ray revealed nothing abnormal (what were they looking for, anyway?). They also gave me an Epi-pen script, which I am very grateful for, because later that evening after eating dinner, I had a very similar reaction. I didn't have to use it, but I'm suspicious of having developed a food allergy, and will now be eating saltines until I can see an allergist. Did anyone else read those studies of people becoming allergic to red meat after being infected with Lyme?
I think the steroids may have been a huge setback for the Bartonella as well, because for hours last night and into today, I was experiencing extreme numbness in my face and eyes, hands, legs, and feet. It was awful. I've had it before but it was never that bad. I was terrified of sleeping last night and kept thinking I was going to wake up paralyzed or blind. It's so hard not to let fear take control after you've essentially had your life taken away, and I'm so grateful that I've gotten it back (for the most part) and am really scared to have it taken again.
Today I'm meeting with me LLMD to discuss a picc line. For those of you who haven't had to go to such extremes, a picc line delivers the abx straight into your bloodstream and bypasses the gut. While it's risky in terms of what it can do to your organs and risky because of potential blood clots, I don't see another way to treat the Bartonella while I have C-diff. The diarrhea is pretty much gone (although I do still have intermittent abdominal pain, and I did have what appeared to be blood in my stool when they took the sample), but I know C-diff can be deadly and can last for months and even years, so I'm thinking it's time for a line.
Did everyone see that Hopkins is opening a research center for Lyme? On the one hand I'm concerned, given that some of these doctors are the ones who staunchly believe Lyme cannot be a long-term condition. On the other hand, a thousand times hooray for research.
As always, please feel free to comment if you're new to Lyme and you'd like to speak with me personally about any questions or fears your might have. I know sometimes it's good just to be able to talk to someone with a shared experience. Off to see my LLMD!
Friday, May 29, 2015
Monday, May 25, 2015
Because Being Informed is Important
Wow. I haven't written in this half-assed "blog" for a long time, but I have some things to share regarding my plea last week to watch "Under Our Skin" - I believe it's On Demand and on Netflix, and the full-length YouTube version is here:
https://www.youtube.com/watch?v=2JgR_Jfbhv8
First, an explanation of why I'm asking everyone to watch this documentary:
I don't want anyone - not even my worst enemy - to experience what I went through. I'll try to condense this story as much as possible.
In the fall of 2011, I went on one of two camping trips with my students that year and became very very ill on the second day. Severe, flu-like symptoms and intense inner-ear and neck pain. I recall asking my boyfriend to check the base of my head for ticks, but he didn't find any. I took a bunch of Vitamin D and green tea and went back for the second camping trip a couple days later. By this time, the flu-like symptoms had subsided, but the ear pain had progressed to my head and neck.
Severe cold symptoms followed every month after, as well as pain and fatigue. My PCP prescribed steroids several times. I saw specialist after specialist after specialist. I saw three different ENTs. Was it the cyst in my sinus cavity? No, said my ENTs. Too small to be responsible for pain. Occipital neuralgia? The pain had become near-debilitating, and a pain management specialist had declared I needed a steroid shot in my neck (thank goodness I accidentally missed that appointment). Months later, my symptoms had spread to the nervous system; I had numbness in random places as well as sharp, shooting pains all throughout my body that would come and go. I had been dealing with what I thought was an ankle injury - was going through PT, trying to help the swelling and pain, etc. He finally sent me to an ankle specialist at University of MD, who had the sense to test me for Lyme, but it came back negative.
FACT: The blood test for Lyme is extremely inaccurate. MANY people infected with Lyme disease will NEVER test positive for Lyme, but will respond to treatment. Last year, the state of Virginia passed a law requiring doctors to inform patients of this inaccuracy.
I proceeded to more specialists; the pain had become so disruptive that I was missing a lot of work. I began to experience cognitive symptoms - dizziness, confusion, memory loss, panic attacks... One specialist was considering MS as a diagnosis. This went on for two years until the substitute who'd taken over my class at work suggested I see a Lyme specialist, who sent my bloodwork out to a specialized lab that runs a test called the "Western Blot" (a more accurate test for Lyme). She'd had the same symptoms I had, and had been diagnosed and treated for Lyme. Turns out I had it as well; the first test was a false negative, and so for two years the corkscrew-shaped bacteria, which is able to cross the blood-brain barrier with far more ease than other menacing organisms, had been reproducing and taking over my entire body.
FACT: Lyme can CHANGE ITS OWN DNA. National Geographic published a study several months ago that highlighted this feature of the bacteria, citing this unique ability as one of the many difficulties in treating the disease. Lyme can learn the antibiotics you're fighting it with and then manipulate its actual DNA to more effectively combat and resist the medication.
I was on antibiotic treatment for a little over a year before I felt normal. I went from being unable to work, drive, get out of bed or make myself food, solve a simple math problem, or remember the names of my family members to being completely functional again. Dr. Daniel Jaller in Rockville, MD, was a PCP who'd seen so many patients with Lyme that he decided to devote his entire practice to Lyme disease. His blog, where he details his research, can be found here: http://lymemd.blogspot.com/
I've met people who've been blinded, paralyzed, even misdiagnosed with auto-immune illnesses and LOU GEHRIG'S DISEASE who have undergone treatment for Lyme and improved 100 percent. They are now healthy and living normal lives. Dr. Jaller provides care to hundreds of us (maybe even thousands) who are suffering from this disease and, like many other Lyme specialists, is under investigation by the state medical board because "chronic" Lyme is not recognized as a condition. He has recently been charged by the medical board for treating chronic Lyme. Here's what happens:
Patients like me, infected with the bacteria for years without knowing, need much longer than the eight weeks someone with acute Lyme disease requires. Often, if you see the tick or the bite and get two months of Doxy, you'll be ok (although many patients experience random symptoms later in life without knowing why). For people like me, it takes months, and sometimes years. Insurance companies look at a patient's bill for all those antibiotics over the course of several months and say hey, wait a second - this is only an eight-week treatment thing, we don't wanna pay any more than that for this person's medications. And so they complain to the medical board (and by complain, I probably mean bribe), and then people like me suffer because Lyme specialists lose their licenses - even though there is now MEDICAL EVIDENCE that proves that Lyme can be a chronic issue that takes a long time to treat. So because the government/CDC, etc. say I'm not sick, then I'm not sick, my doctor is crazy, and now I won't have treatment options.
I was off of the meds for about six months, but then a co-infection called bartonella surfaced, and so I underwent more treatment this past January. I had to discontinue the antibiotics for now due to some GI issues (yes, there are absolutely risks associated with long-term antibiotic treatment, but as I've learned, the risk is most definitely worth the reward - I'd rather have GI issues than be paralyzed or cognitively dysfunctional) but I am fighting for Dr. Jaller's practice and for all of the people out there who are suffering and continually turned away from doctor after doctor because no one knows what's wrong. This Lyme documentary will not only inform you about Lyme (even congenital Lyme - it's so sad to see these babies born with Lyme passed through the placenta because the mother was asymptomatic or had a false negative test - their health deteriorates to the point of no return and they're nonverbal and unable to walk, etc.), but it will inform you about the politics behind why my condition is so hush-hush and how the medical board is full of dirty, dishonest individuals who have no interest whatsoever in your medical care. I am working on putting my story together for a local news station and have been harassing the Attorney General's office with my concern over these charges brought against my doctor, but I honestly feel like the only thing that will ever make any difference is for people to KNOW. BE INFORMED. Have an understanding of the disease that's now been called the "next epidemic" by three separate publications, including Jared Diamond's Guns, Germs and Steel. Know about your medical board and how they can affect the care you receive at the request of an insurance company. Just watch. And share. Please.
https://www.youtube.com/watch?v=2JgR_Jfbhv8
First, an explanation of why I'm asking everyone to watch this documentary:
I don't want anyone - not even my worst enemy - to experience what I went through. I'll try to condense this story as much as possible.
In the fall of 2011, I went on one of two camping trips with my students that year and became very very ill on the second day. Severe, flu-like symptoms and intense inner-ear and neck pain. I recall asking my boyfriend to check the base of my head for ticks, but he didn't find any. I took a bunch of Vitamin D and green tea and went back for the second camping trip a couple days later. By this time, the flu-like symptoms had subsided, but the ear pain had progressed to my head and neck.
Severe cold symptoms followed every month after, as well as pain and fatigue. My PCP prescribed steroids several times. I saw specialist after specialist after specialist. I saw three different ENTs. Was it the cyst in my sinus cavity? No, said my ENTs. Too small to be responsible for pain. Occipital neuralgia? The pain had become near-debilitating, and a pain management specialist had declared I needed a steroid shot in my neck (thank goodness I accidentally missed that appointment). Months later, my symptoms had spread to the nervous system; I had numbness in random places as well as sharp, shooting pains all throughout my body that would come and go. I had been dealing with what I thought was an ankle injury - was going through PT, trying to help the swelling and pain, etc. He finally sent me to an ankle specialist at University of MD, who had the sense to test me for Lyme, but it came back negative.
FACT: The blood test for Lyme is extremely inaccurate. MANY people infected with Lyme disease will NEVER test positive for Lyme, but will respond to treatment. Last year, the state of Virginia passed a law requiring doctors to inform patients of this inaccuracy.
I proceeded to more specialists; the pain had become so disruptive that I was missing a lot of work. I began to experience cognitive symptoms - dizziness, confusion, memory loss, panic attacks... One specialist was considering MS as a diagnosis. This went on for two years until the substitute who'd taken over my class at work suggested I see a Lyme specialist, who sent my bloodwork out to a specialized lab that runs a test called the "Western Blot" (a more accurate test for Lyme). She'd had the same symptoms I had, and had been diagnosed and treated for Lyme. Turns out I had it as well; the first test was a false negative, and so for two years the corkscrew-shaped bacteria, which is able to cross the blood-brain barrier with far more ease than other menacing organisms, had been reproducing and taking over my entire body.
FACT: Lyme can CHANGE ITS OWN DNA. National Geographic published a study several months ago that highlighted this feature of the bacteria, citing this unique ability as one of the many difficulties in treating the disease. Lyme can learn the antibiotics you're fighting it with and then manipulate its actual DNA to more effectively combat and resist the medication.
I was on antibiotic treatment for a little over a year before I felt normal. I went from being unable to work, drive, get out of bed or make myself food, solve a simple math problem, or remember the names of my family members to being completely functional again. Dr. Daniel Jaller in Rockville, MD, was a PCP who'd seen so many patients with Lyme that he decided to devote his entire practice to Lyme disease. His blog, where he details his research, can be found here: http://lymemd.blogspot.com/
I've met people who've been blinded, paralyzed, even misdiagnosed with auto-immune illnesses and LOU GEHRIG'S DISEASE who have undergone treatment for Lyme and improved 100 percent. They are now healthy and living normal lives. Dr. Jaller provides care to hundreds of us (maybe even thousands) who are suffering from this disease and, like many other Lyme specialists, is under investigation by the state medical board because "chronic" Lyme is not recognized as a condition. He has recently been charged by the medical board for treating chronic Lyme. Here's what happens:
Patients like me, infected with the bacteria for years without knowing, need much longer than the eight weeks someone with acute Lyme disease requires. Often, if you see the tick or the bite and get two months of Doxy, you'll be ok (although many patients experience random symptoms later in life without knowing why). For people like me, it takes months, and sometimes years. Insurance companies look at a patient's bill for all those antibiotics over the course of several months and say hey, wait a second - this is only an eight-week treatment thing, we don't wanna pay any more than that for this person's medications. And so they complain to the medical board (and by complain, I probably mean bribe), and then people like me suffer because Lyme specialists lose their licenses - even though there is now MEDICAL EVIDENCE that proves that Lyme can be a chronic issue that takes a long time to treat. So because the government/CDC, etc. say I'm not sick, then I'm not sick, my doctor is crazy, and now I won't have treatment options.
I was off of the meds for about six months, but then a co-infection called bartonella surfaced, and so I underwent more treatment this past January. I had to discontinue the antibiotics for now due to some GI issues (yes, there are absolutely risks associated with long-term antibiotic treatment, but as I've learned, the risk is most definitely worth the reward - I'd rather have GI issues than be paralyzed or cognitively dysfunctional) but I am fighting for Dr. Jaller's practice and for all of the people out there who are suffering and continually turned away from doctor after doctor because no one knows what's wrong. This Lyme documentary will not only inform you about Lyme (even congenital Lyme - it's so sad to see these babies born with Lyme passed through the placenta because the mother was asymptomatic or had a false negative test - their health deteriorates to the point of no return and they're nonverbal and unable to walk, etc.), but it will inform you about the politics behind why my condition is so hush-hush and how the medical board is full of dirty, dishonest individuals who have no interest whatsoever in your medical care. I am working on putting my story together for a local news station and have been harassing the Attorney General's office with my concern over these charges brought against my doctor, but I honestly feel like the only thing that will ever make any difference is for people to KNOW. BE INFORMED. Have an understanding of the disease that's now been called the "next epidemic" by three separate publications, including Jared Diamond's Guns, Germs and Steel. Know about your medical board and how they can affect the care you receive at the request of an insurance company. Just watch. And share. Please.
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