Sarah Lamando was interviewed by the administrator of http://www.tiredoflyme.com/. The following is her story:
How did you figure out that you might have Lyme Disease?
I was a teenager when I first found out, 17 years old to be exact. I woke up one morning with a crushing, light-sensitive headache that was accompanied by flu-like symptoms, aching joints and severe muscle pain and fatigue. Immediately, my mother took me to my primary care doctor and I was tested for Lyme. Tests came back negative, so the doctor assumed it was a virus and would pass, which it did, about a week afterwards.
Three months later, however, I developed a fatigue so severe that I could barely make it up the stairs to my next class in school without feeling like I was going to collapse, and the exertion from it actually caused my heart to start skipping beats. The next day I awoke to find numerous red rings and egg sized bruises scattered all over my body. This is where I started to worry. I went back to my doctor, who seemed rather dismayed by my presentation, re-tested me for Lyme, which now came back very positive, and gave me two weeks of doxy. Surprisingly, it actually worked, and being the stupid teenager I was, the minute I felt better, I threw out the rest of the bottle, and was quite happy to resume my "normal" life. Unfortunately, in the years to come, my life would turn out to be anything but normal...
What were some of the symptoms you have experienced from Lyme?
A better question would be "what symptoms haven't I experienced from Lyme!"
My first symptom list is described above. At the beginning it was purely physical, and in retrospect didn't last very long...three months is nothing compared to how long it's taken me to recover from the later stages of this disease.
In 2002, I had my first relapse. It was simply incredible to watch how fast the disease progressed and how quickly it seemed to take over every aspect of my physical, emotional, and mental being. During this period, my list of symptoms included severe, searing pain that started in my lower back and quickly traveled up my entire spine. Once that pain reached my neck and head, my motor-coordination abilities became non-existent. I must have looked like a drunken lunatic bouncing all over the place, and running into things! I also developed extreme mood swings, aggressive, rage filled thoughts, short-term memory loss, brain fog, getting lost in familiar places, peripheral neuralgia, night sweats, horrific nightmares, and severe anxiety. Once I started treatment again, my symptoms became so bad that I developed photophobia, agoraphobia, severe insomnia, unbelievable joint pain (in every single facet), suicidal thoughts, and severe depression.
It took me six months to recover from that "bout," and afterwards, as long as I took the oral antibiotics everyday, I was pretty much okay.
September 2007 is when things really got weird. I took some very bad advice, and decided to stop taking those antibiotics that I had been on for nearly four years. Within five days my whole world changed. I started to have non-epileptic seizures, walking impairments, periods of paralysis as well as what looked like an early onset of dementia. I often did not recognize my family, could not hold a conversation for the life of me, had no sense of time or money. I couldn't even tell you what day it was. Sensory overload also became a huge issue for me at this time, so I guess you could say that while the beginnings of my Lyme Journey were mostly physical, it ultimately led to deeper Neurological and Neuropsychiatric manifestations.
It isn't uncommon for prospective Lymies to go through many tests until a positive result is found. Which numbered test finally came back positive for you?
This is actually one area that (besides that three month window at the beginning) I've never had an issue with. Although when I had my initial 2002 relapse it was my college psychiatrist who ultimately sent me to a LLMD. Luckily, before becoming a psychiatrist, she had been a pediatrician and was very well aware of Lyme and its later manifestations. Before seeing her, I had actually gone to the hospital and tested positive again for Lyme, but when I followed up with my new primary care doctor, he wasn't exactly thrilled at the diagnosis and told me to go see a psychiatrist...which I did. To read more about this, please go to my blog (linked below) and click on the page that says, "My Story." I've worked really hard to write a complete account of my experience in hopes that it will answer some questions, and give people going through something similar a chance to relate and be comforted in knowing that they're not the only person out there that has experienced this type of insanity.
How has your relationship with friends and family been affected?
I think this is actually the saddest part for me to talk about. Apparently, no one likes to be around people who are constantly sick (who knew, right?). I'm just kidding, but the reality of it is that your friends disappear along with your social life, and your family tries to relate as best as humanly possible, (that is if you're lucky enough to have them believe CLD is real). But it does really take one Lyme patient to be able to completely relate to another. This is why I'm thrilled to see how many organizations and supportive social networking sites have become available nowadays.
Lyme also can cause a ton of financial tension, and that is something that I find unforgivable in the medical community. At first, people often think it will be a "quick fix" and they take out their savings and rack up the credit card bills, but after awhile, (and I think for understandable reasons) they are more hesitant to help out. I have resorted to selling practically everything of value I've ever owned to help with the financial burden. My family have also helped me out in this way, and between selling stuff and waiting for disability, every month we seem to just get by with all the medical costs. One thing for sure though, this type of experience has changed me to the core! Losing your health and the ability to support yourself has a way of making you realize what really matters in life and what just absolutely does not. For that - I can't help but be extremely grateful.
Are you on a conventional or holistic protocol?
Right now I'm on a holistic protocol, but it took me years of going through conventional methods for me to finally understand that (at least in my case) antibiotics cannot cure me - especially at my very late stage. It can definitely keep the illness at bay, but after two years of being dependent on IV treatment. Every attempt to stop immediately resulted in severe relapses, ones in which I would wake up paralyzed and have to wait for someone to find me, carry me out of the house, and to the doctor's office to receive the IV again), I've realized that there must be another way to beat this!
What are some signs of improvement?
The mere fact that I'm off all pharmaceutical antibiotics and not paralyzed is enough to make me hope that the protocol I'm on now is working! I have also noticed that I have less seizure-like episodes, am able to recognize people and places, can hold a conversation (although "talking" is way more exhausting to me than writing), and can even start writing again (hence the blog) - which has always been a passion of mine.
What are some things you had to put on hold in your life because of Lyme Disease?
I've honestly had to put everything I at least thought I ever wanted on hold. Relationships are definitely a sore spot for me, and it often can get extremely lonely at times, but I know I cannot even think of entering a relationship until I am well again, in my opinion, it's just not fair. The thing I miss the most, however, is my career. During the years of 2003-2007 I became a Licensed Massage Therapist, Craniosacral Therapist, Reiki Practitioner, and was certified in Lymphatic Drainage. I absolutely loved everything about my job, and was quite good at it. I hope that is something I can resume once I am able to work again.
Before this disease, I was on a different path, one that held very different expectations of what I thought I wanted out of my life. Experiencing this illness has put me on an altogether different path, so in that respect, I haven't had to put on hold things I know will come to fruition once I beat this thing. I'm just waiting for the "GO" sign!
Herxing can be brutal at times. What are some of your preferred methods to reduce it?
That's a hard question to answer because it really all depends on what you are able to do while herxing. For example, while I was on IV treatment, I was able to drive, and had enough stamina to practice Bikram Yoga practically every day. It did wonders for me - truly amazing, and really helped get rid of all those toxins. Once I stopped the IV however, I was no longer able to drive, and still have very limited energy. So I do what I can; I bought a cleansing system off E-bay for $150 that I find really helps (despite all of the bad press about it). When I can, I take sea salt baths, use a detoxifying liquid herb, and take a supplement to help bind the toxins and escort them out of my body.
Sometimes though, the herxes are so bad, that all I can do is lie in bed, hold on, and simply wait for it to pass. When I do this, I at least drink water with cayenne and lemon in it to help get my lymphatic system moving. Other things I've done with success in the past are coffee enemas, mud wraps (don't neglect your body's largest organ!), sleeping in hyper-baric chambers, and using magnetic products that not only help with that dreadful "sensory overload" I have, but also increase circulation. Besides that, I guess the last thing I do is make homemade stocks and healing "tea-less" teas. You can find those recipes on my blog if you go to the page, "Healing Recipes and Remedies."
You have your own website called "A Slice of Lyme" http://www.asliceoflyme.blogspot.com/. What type of aspirations do you hope to achieve with it?
My first and foremost goal is to raise awareness. I share my story so that people who feel that they are alone going through this one "Mother" of an illness can realize that they are not. My second intention is to raise funds not only for myself, but for others like me who don't have the monetary means to get treatment. I've been there, and know how desperate people can become. How could I not want to help them!
I use blogger, and would really like to create a venue for a discussion forum, but haven't been able to find a gadget that enables that through my medium. Hopefully, it will come through though, as I'd really like to hear the thoughts, opinions, and experiences of other Lymies (besides just the commenting - although I love it when they do).
Eventually, I'd like to create a unique "healing center" and refuge for Late Stage Lymies to be able to go to. I'm definitely going to post more about this "Vision" of mine when I get all the details together. The thing that bothers me the most about this illness is that the way it presents itself often leads to isolation. People who suffer from it simply do not have the energy or means to meet others like them, and therefore feel alone and isolated. I'd like to do something about that!
Is there any advice you could give to those Lymies who feel there is no hope left?
This is a topic that is very sensitive to me. What most people don't realize is that 1 out of 3 Late Stage Lyme Sufferers will try to commit suicide at some point, and unfortunately a long time ago I was one of them. However, my Near Death Experience was the most profound thing I've ever experienced, and ultimately made me realize that "giving up" was NOT an option.
I just talked with another "Lymie" friend of mine who said, "When it comes to Lyme, there ARE NO BOUNDARIES." What that means is that unlike any other illness I've ever seen, Lyme patients (and even former Lyme patients) sincerely want to help others who are going through what they went through. It simply does not matter who you are. If you have Lyme, there are people who will literally move mountains to help you. All you have to do is ask!
There are many supportive sites on the web, even through facebook, that are dedicated to supporting people who feel they don't have any hope left. Life is different now than when I lost all hope; there is more awareness now, more support, more knowledge. I know that if I had that available to me at the time, I would have never given up. Just remember there really ARE NO BOUNDARIES when it comes to helping a fellow Lyme patient. Most of us will do anything and everything we can to help you make it back to the other side.
Sarah Lamando, New York
P.S. Name brands of medications, supplements, etc. were taken out of this post for legal reasons. If you'd like to know the names, leave a comment here and include a way that Sarah can contact you directly.