This is the continuation of my experience dealing with Chronic Lyme Disease and Multiple Chronic Infectious Disease Syndrome. For the details of my story, please see yesterday’s blog post.
Diagnosis – What a relief! Wait, there’s no cure?
The truth is, getting a diagnosis of Chronic Lyme Disease isn’t much relief at all. Of course, it’s validating to know that someone believes you and has some answers. But the answers are scary. There is no cure for people who have had Lyme Disease as long as I have. Hopefully, building our immune system and killing the spirochetes (Borellia Burgdorferi bacteria) will give us some relief eventually. But because there’s no getting rid of it, even if we go into remission, it will lay dormant in our bodies until the day we die. It’s opportunistic and at the first chance (pneumonia, car accident, child birth or just not sleeping well for a few days in a row) it will come on out and make itself known. FYI: If you’ve just had Lyme for a few weeks, you may have a good chance of getting all the spirochetes after a month of antibiotics but this is not the situation with Chronic Lyme Disease. (Researchers found the genetic footprint of Borrelia Burgdorferi in the Iceman recently discovered in the Alps. This makes him he earliest known human with Lyme Disease. There is no doubt in my mind that this bacterium will still be around long after we humans are gone).
I’ll never forget the time at my support group when my doctor was telling some of the new Lymies about their good prognosis. “You’ll have a few years of treatment, blah,blah,blah ……and all will be good”. Then she turned to me and said, ‘Oh, well, not you,” meaning that I would be treating for the rest of my life. Of course, she said this because she’s honest to a fault and she knows I’m always good for a laugh. And I did laugh because, in all honestly, what else could I do. The truth is that if I wasn’t able to find humor in the absurd, I probably wouldn’t still be here. Yes, I will never be rid of the flippin’ spirochetes. They are like little corkscrews that screw into every tissue and organ in my body. They are like drones going undetected. They take several forms and can turn into an cyst with an impenetrable bio film when they feel they are under attack. You can’t simply just take antibiotics all the time. You have to pulse dose or else they’ll just go into cyst form to protect themselves and all you’ll really be killing is the good bacteria. I don’t have a medical degree, science has never been my forte, but I have been forced to learn more than I ever thought I would have to about this disease just to have a chance at a better life.
Controversy – Great ‘cause what I really need is to finally have an answer and then find out it’s not accepted by the CDC.
Imagine suffering for years with no relief in sight. Doctors cannot help you and have implied you are imagining it. So you stop looking for answers and just try to mange as best you can. One day, when you can no longer take it, you find a doctor who has an answer. You’d think this would be sweet relief. But, no. Not only is the answer not simple, it’s one that is denied by many in the medical community. This has been my reality and the reality of so many others. One of the most contentious battles in medicine today is being fought between the Lyme Literate doctors (LLMDs) and the International Lyme and Associated Diseases Society (ILADS) against the Infectious Disease Society of America (IDSA), National Institute of Health (NIH) and Center for Disease Control (CDC). There is a lot of news out there lately about how the CDC and a core group of doctors from the IDSA, NIH and CDC have been colluding to deny the existence of Chronic Lyme Disease. If this is interesting to you, please consider watching the movie Under our Skin or reading the book Cure Unknown by Pamela Weintraub. You will be infuriated and astounded. Recently, the CDC finally responded to the request for information from the producer of Under our Skin after 5 years (the Freedom of Information Act states that requests will be met within a month). When she received the information, she saw why they had tried to keep it from her. They repeatedly referred to LLMDs and patients as quacks and excluded LLMDs from the discussion. The link below will take you to the story written about this in the Poughkeepsie Journal. http://lymedisease.org/news/lyme_disease_views/pojo-foia-emails.html
A couple of years ago I needed to get some vaccinations for a vacation I was taking so I went to see an Infectious Disease specialist. I didn’t want to be there and would have gotten them at a pharmacy but I couldn’t have the live virus because of my compromised immune system. (I had seen an Infectious Disease Specialist in 1995 and he clearly hadn’t done his job properly or else I would have gotten a diagnosis then and not had to suffer for years on end). When I told him about my current treatment (it was in the very beginning and I was treating the Bartonella first) he went on a tirade and accused my doctor of taking advantage of me and being unscrupulous. The medicine I was taking at the time cost me $15 a month. How is that taking advantage of me? Then when I said that it was actually helping and that I no longer had horrible fits of rage and that my daily migraines were going down, do you know what he told me? He said it was a coincidence. The audacity! I wonder if it’s still a coincidence now that after almost 2 decades of daily migraines I only get them maybe once a month (depending on if I’ve had any other illnesses that month). In the interest of being diplomatic, I told him I was listening to everything he said and that I would take his opinion into consideration. To myself I was saying, “This guy is soooo lucky that I’m too exhausted to write a review about him.”
I didn’t tell him my doctor’s name because LLMDs literally live in fear of their licenses being revoked. And for what – because they prescribe antibiotics? I know people who were on tetracycline for years for their acne. But God forbid you give antibiotics to someone whose body is being taken over by a stealth bacterium. What the hell are antibiotics for if they aren’t for saving lives! Listen, I’m totally opposed to feeding antibiotics to animals (unless they’re really sick and need them). I’m opposed to taking antibiotics when there is no bacterial infection present (i.e. for viruses). But why on earth would you deny someone antibiotics when it is the difference between them being able to get out of bed and live their life or to just waist away. If I had never started treatment, I would not be able to write any of this. I could barely put a few words together. This link will take you to information about Dr. Charles Ray Jones. A pediatric Lyme Specialist, he has been saving kids lives for years. Through it all he has been repeatedly harassed and taken to court. http://lymedisease.org/news/tag/dr-charles-ray-jones
The problem with invisible illness:
Invisible Illnesses are rough. You would have no idea by looking at me that there is a war going on inside of me. Because I’m not in a wheel chair and I don’t have some disease that everyone freaks out about like Cancer, people expect me to be fully functioning. Hell, I expect it of myself. I run a business, have two young kids, work at my daughter’s elementary school, manage rental properties and have been known to chair my kids’ Co-op Preschool classes. I don’t shirk my responsibilities. There are many people with Lyme who could not do all of those things. And frankly, I don’t do all of those things all that well at times. It’s hard feeling like you aren’t living up to your potential and I don’t want to disappoint anyone or let anyone think I’m not fulfilling my duties. The hardest part of this is disappointing my kids. My daughter said to me recently that she “wished I was stronger like the other moms.” It broke my heart. The fact that I’ve had to be incredibly strong to mange this disease doesn’t mean anything to her. She just wants me to be able to go to Girl Scout Camp with her but I can’t because of the sleep disorder I have associated with the Lyme Disease.
There have been many times throughout my illness and treatment (especially when I’ve had to restrict a ton of foods and have gotten super skinny) that people have said to me, “You look great! You must be feeling better.” I know that people are just trying to be kind and make conversation. But what I am really thinking when people say things like this is, “No. I am not feeling better. In fact, I only have about 5 different foods I can eat right now. That is why I have lost weight. Oh, and I’m wearing make-up over my dark circles. That helps, too.”
Although, lately, I have been able to control the migraines much better, the unrelenting fatigue is just, well, unrelenting. When I tell someone that they will inevitably say something like, “Oh, yeah. It’s tough parenting young children. I’m really tired, too.” No, you are not tired like me. I know you don’t mean to be insulting, but unless you have what I have, you do not know what tired is. If I explain that I can’t always come up with words or that you might tell me something and it will be as if you never told me, don’t say, ”Oh, yeah. I forget stuff, too. That’s just part of aging.” I have never met another 42 year (that doesn’t have Chronic Lyme) with the memory problems that I suffered. Thankfully, they are much better now, but I can’t depend on my thinking being as clear as it is now forever.
Because it’s hard for people to understand, all of us Chronic Lymies often feel like nobody believes us. We’re afraid people think it’s all in our heads. And to that I say, yes, it is in my head. And probably every other crevice of my body, too.
Why Lyme is one of the worse chronic illnesses to have:
In the lottery of chronic illnesses, let’s just say Lyme isn’t a good number. Most chronic illnesses affect one system in your body (heart, kidney, etc). There is really no limit to the damage that Lyme Disease can cause. And the even weirder thing about Lyme Disease, it moves around. One day you might have heart palpitations and think you’re having a heart attack. Another day you might get a migraine and then your whole right side will go numb. You might think you’re having a stroke. It happened to me. Mornings are the worst. When it’s really acting up, being awake is literally painful. You could be 25 but move around like your 80. The fibromyalgia, stiff joints, fatigue make it very hard to pull yourself out of bed. And then there’s night. Well, that’s even worse when you have Lyme. Here is the most ironic thing I’ve experienced: unbearable fatigue with an inability to sleep. How flippin’ cruel is that? Sleep disorders are huge amongst many of us with Chronic Lyme. And it really just compounds the problem. If you don’t sleep you get sicker and sicker. I got no more than a few hours of sleep a night for months. This was during a period that I was also nursing my youngest child and I think this is the reason the Borellia was able to get so rampant. I was in survival mode and wouldn’t even let myself think about how horrible the pain was. If I really thought about it, well, I just couldn’t.
How Lyme Disease Kills
There are many ways to die from Lyme Disease. It is rarely listed on a death certificate but is the “great imitator”. People who die from any number of other illnesses could really have died from the complications brought on by Lyme. MS, ALS, Alzheimer’s, Parkinson’s, Chronic Fatigue Syndrome, Fibromyalgia – people with Chronic Lyme disease have been diagnosed with these illness initially only to find out that what they really have is Lyme Disease.
However, the number one cause of death among people with Lyme Disease is suicide. To me, this is not surprising in the least. If you are in a tremendous amount of pain, can’t think clearly, are losing words, having panic attacks, fatigued beyond belief – why would you want to stick it out. Especially if everyone is telling you it’s in your head. When I was first sick in my 20s, I would lay in bed just praying an intruder would come into the house and kill me. I didn’t really have the energy or inclination to come up with my own way out, but I thought that maybe if someone would make it easy for me, I could finally be relieved of the pain, confusion and just plain hopelessness.
At support group a few months ago, a new girl came in with her mom. I took one look at her and just knew that that’s where she was. She’s in her 20s and dealing with all the stuff I dealt with at that age. You can’t go out with your friends because you feel like hell and can’t drink alcohol. You feel like you’re 80 and your future has been hijacked. You stop talking to your friends because you know they don’t understand and no one really wants to hear about it. But thankfully, she does have people that she can talk to that understand. Misery loves company. Although I went through all of this on my own for 16 years, in the last couple of years I have had the great fortune to make friends with some other Lyme survivors I’ve met through the support group. Until then, I had never met anyone with the same crazy coping mechanisms I have. Wearing sunglasses everywhere, having to have certain lights on or off if we’re watching tv, having to move seats on a bus if someone with perfume sits down next to us. Throughout all of this, the most valuable thing for me has been meeting other people who understand. Everyone wants to feel like at least one person gets it. I can’t say how thankful I am to have them. No one else gets that this can be forever. Other people are impatient and wanting to know why I’m still treating after almost 3 years. That always makes me laugh and think to myself, “Gee, I’m sorry that my illness is so difficult for you.”
What a difference a decade makes. I don’t remember if the symptoms I had when I was first sick in the mid 90s or the symptoms I had after my second child was born were worse. I think it was probably more severe after my son was born becasue of my inability to sleep. The difference in my attitude and my ability to deal with the situation had to do with a shift in perspective (and my kids). When I was younger, all I could think about was how unfair it all was. I was wracked with mental and physical pain. As a mother and business owner, I simply don’t have time to feel sorry for myself or lie around in bed. In no way do I mean to imply that those who do lay in bed all day are lazy. There are people far worse of than me and when you don’t have a specific reason to get out of bed (you’ve had to give up work because your brain and body have given way to the disease), it makes it that much harder to motivate. I remember when I had to take a nap every two hours just to get through the day. Sometimes, I’m incredibly envious of my friends that can take care of themselves first and get the rest and care they need. But my kids need me (one of whom has her own chronic illness to contend with) and I have a mortgage to pay. It’s amazing what you can make yourself do if you have no choice. I have to persevere because, the control freak that I am, I don’t believe that anyone could look out for my children the way I can. Although I pray they don’t have to deal with Lyme Disease, it may be in their future. It does pass in utero and there is some debate about if it crosses through breast milk. Just one more reason for me to feel guilty.
I kind of don’t know what to do with myself:
That’s what I told my doctor a couple of years ago when I had my first two week period without taking so much as a Tylenol. Accepting my diagnosis was a challenge I hadn’t anticipated. For one, there is so much controversy around it. And another, I had been sick my entire adult life. In some ways, it was part of my identity. I had just assumed I would have to live my life in pain, constantly wondering what my next trigger was going to be. I couldn’t believe that I’d ever get to a point where I would be able to accomplish more than what absolutely positively had to get done.
There was one point about a year and half ago when I was feeling so good that I was taking Kick Boxing Classes and shoveling snow off our entire very long and steep driveway.
Getting Sick Again:
Unfortunately, that didn’t last. The hard truth is that I will have to continue to be vigilant for the rest of my life and the littlest thing can set me back.
I recently had to have surgery on my salivary gland. I got a lot of really wonderful support from friends and family. But the interesting thing to me was just how concerned they were. Maybe it was because they could see how swollen I was and they knew that I had to have surgery. It made me realize just how marginalize those of us with invisible illnesses are. I mean, this was nothing compared to Lyme Disease. It was not a complicated surgery, although there were some real risks associated with it and I was worried. I’m feeling better and, hopefully, I won’t have to have the gland removed in the future. But all of the inflammation made my Lyme Disease act up again and I had to go back on antibiotics after being off of them for 6 months. I can’t express how deeply troubling and just plain sad this was for me. For months I had been the cheerleader of my support group. Living proof that you can get better, even after being sick for as long as I had been. I’m still processing this. I had actually started to kind of think of myself as someone who might be able to make plans for the future again. I’m not saying it’s all over for me and I should just give up now. It’s just that it’s so frustrating to not be in control of your health. The only thing you can really control is how you chose to deal with it and that is a constant struggle for me.
Giving up and not continuing to search for answers will haunt me for the rest of my life. I have a hard time forgiving myself for that. What does it say about our society (and myself) that I could be talked into believing that since they couldn’t find anything, I would just have to live with it? I was told I had migraines and would just have to manage them. I began to feel like it was my fault that I couldn’t manage them better even while I was doubting that migraines were the sole malady I had. Doctors need to educate themselves. A friend of mine recently met a woman who took her daughter to the emergency room at Children’s Hospital because she had a tick embedded behind her ear. The doctor took off the tick and told her to watch for a rash or fever but that otherwise the girl would be fine. The mother asked if they should test the tick and the doctor said no. WRONG WRONG WRONG. It is imperative that they send that tick to a lab and that the girl get antibiotics right away as a rash and fever do not always occur. It will be too late if they wait until symptoms do occur and it is always better to be safe than sorry. This is medical malpractice! Get it together doctors and do your job!
Thank you for taking the time to read this. I hope you’ve found it informative and that you will remember that you can never tell what a person is dealing with my looking at them. Please educate yourself about vector born illnesses. And don’t kid yourself that you don’t have to worry ’cause you live in an area that isn’t endemic like Seattle. Birds carry Lyme and they migrate. One of my friends was bitten in Leavenworth a few weeks ago. And, not to open a whole new can of worms – I know doctors that believe it can be transmitted via mosquitos, too. Just something to think about…
Here is a list of Symptoms I have had through the years:
Lightheaded and Dizzy
Unbearable fatigue and lack of stamina. Hurts to be awake.
Shortness of breath
Nausea and Cramping
Brutal migraines. It typically starts with a sharp (think pick ax) pain in the back of my neck. Usually then moves to the entire head
Sensitivity to light, smells and sound
Loss of Memory/Forgetfulness – inability to remember words and form sentences
Disorientated, forget where I am going
Buzzing/vibrating noise in head with plugged up ears
Numbness in limbs
Low blood pressure and high pulse.
Mood swings, irritability, panic attacks
Inability to detoxify – one toxin (such as alcohol or aspertame) will send me into a tailspin.
Many more that I’m forgetting due to Lyme Brain;-)
Helpful Links where you will find detailed information about prevention, diagnosis and treatment:
International Lyme and Associated Diseases Society (ILADS ): http://www.ilads.org/