This kid, Alex Larned, is a couple years younger than me. We went to the same high school. I never saw him much, but mutual friends tell me he is an excellent kid. For the past four years, some pretty horrific things have happened to him which have ruined his quality of life. His family does not have much money and he needs some serious help. Please read this note from him if you can:
I know many of you have not heard from me or seen me for a long time. You probably figured I just dropped off the face of the earth. Well, that is not all that far from the truth. In the past months, some very terrible things have happened to me that have left my life in a state of ruin and desperation. I hope you will read this message as I tell you what has happened and ask for your help.
As most of you know, I have been struggling with long-term chronic lyme disease for several years now. I was infected in my senior year of high school, and it has persisted ever since. My symptoms have included extreme fatigue, inability to think or concentrate, and acute pressure headaches, all of which I experienced every day for the past 4 years.
While I managed to struggle through my freshman year of college, I had to take the next year off because of how terrible my quality of life had become. I had undergone many antibiotic treatments leading up to this point, and I began an even more aggressive regimen during the year off in order to try to cure it once and for all. Unfortunately, the treatments failed. They did not change my condition in any significant way. As the year off was coming to an end last summer, and I realized I might have to skip college again, I became desperate.
This is where my life started its tumble into complete ruin and led to the medical emergency I am in now. Desperate for a solution, I enrolled in an experimental treatment for lyme disease called Hyperbaric Oxygen Therapy or HBOT. Someone suggested HBOT to me because it had supposedly “cured” someone that they knew of lyme disease. My neighbor in Wilton also said that she had a friend who underwent this treatment for lyme disease and it improved her dramatically. Naturally, I researched it extensively, and all the research online said it was completely safe, and had helped tons of lyme disease patients get their life back. As I’m sure you have figured out, it did not have this effect on me.
For those of you who don’t know, lyme disease is caused by bacteria which enters your body through a tick bite, and in my case makes its way to your brain where it multiplies. The theory behind HBOT is that the bacteria cannot survive in a high oxygen environment. So what they do is they force an elevated amount of oxygen into your bloodstream in order to kill the bacteria. This is done by using hyperbaric chambers, which are chambers used to pressurize air for divers who get the bends while scuba diving. In the therapy, they have you get in the chamber where they pressurize the air and have you breathe 100% pure oxygen through a mask. The higher pressure and higher concentration of oxygen forces the oxygen into your blood stream.
This therapy has been used for many conditions including traumatic brain injury with much success, but there was obviously not enough research on its effect on lyme disease, because the severity of the reaction I had was unimaginable. It started with the feeling of immense pressure in my head, like 200 pounds of force squeezing my head in a vice. Then, I started having facial spasms and muscle twitches. My neck would yank itself back involuntarily and my whole back stiffened up so I could barely move. I asked the doctor what these reactions were, and she said it was to be completely expected. She said it was called a “herxheimer reaction,” which means that your symptoms have to get dramatically worse before they get better. Supposedly the reactions I was having meant that the oxygen was killing off the lyme disease. So, for the moment, I hung in there, and kept going back for the treatments.
The muscle spasms continued. My jaw started twitching rapidly up and down and wrenching itself from side to side uncontrollably. I started to experience sensations of movement deep within my head, like things were whirring around and miniature explosions were happening. Though it was extreme, up to this point I took all this to be a good sign. I thought the treatment was working and that this was indeed a “herxheimer reaction,” meaning the bacteria was being killed.
Then, things took a turn for the worse. The movement inside my head turned into extremely violent pushing and piercing sensations. Sometimes it felt like fingers pushing very forcefully through my brain and sometimes it turned very sharp, like razor wires and needles piercing their way into the deepest parts of my head.
I would also go into episodes of what I called “paralysis” for lack of a better term. The movements in my head would turn very sharp, and I would lose control of my neck and head. My head would drop down, my jaw dropped, and my neck started swaying from side to side. Sometimes my eyes would shoot wide open without my control. Sometimes I would start drooling.
I had to go to the Emergency Room because of how bad it got. I was losing control of the muscles in my tongue and I started to slur my speech. I was fearful that I had suffered brain damage, so I got an MRI. The MRI came back clear, which I suppose is the better of the two options, but it really does not tell me much. The type of damage that lyme bacteria can cause is within the cells and in the nerves, and these can’t be seen on an MRI.
Needless to say, I stopped the HBOT when all this began happening and it became clear that it was not helping me, but harming me in a very serious way. Since I stopped, the episodes of paralysis have become much fewer, but the violent piercing sensations haven’t stopped for one second. Every second of every day for the past seven months, it has felt like hundreds of needles are being pushed through my brain.
For some reason, movement of any kind makes the pain even worse. Whenever I talk, or move, or even chew food, it seems to dig even harder into my brain until it is unbearable. So now, I am essentially incapacitated. I live on the couch, and I move only twice a day to go to the bathroom. I talk as little as possible, usually only nodding my head or using my hands to communicate. Eating a meal usually takes me somewhere around three hours because I have to eat only a few bites at a time or the pain becomes terrible.
This has been my life for seven months, because I have not had enough money to see a doctor. My father lost his job about a year ago, so by the time all this happened there was almost no money left, and they were threatening to foreclose on our house. The problem is because my case is so complicated, I need to see a top lyme disease expert. While many of these doctors are in the Northeast, there are only a handful of them, and none of them takes insurance. It is a very well known fact in the lyme community that one of the biggest problems we deal with is literally none of the top lyme experts take insurance. This is due mostly to insurance companies failing to acknowledge that chronic lyme disease is even a real disease.
I am no longer living in my father’s house in Wilton. My father subjected me to such severe parental neglect during this experience that I will never forgive him. For days on end, I told him that I needed to quit the HBOT because of how terrible it had become, but along with the HBOT doctor, he told me this meant it was working and that I needed to go back. Time after time he witnessed me go into these horrifying episodes of paralysis where it looked and felt as if I was going brain dead, and he did nothing about it – he did not even express concern to the doctor. One night, I was standing in front of him in my bathroom with my head dropped down, my eyes twitching, and I was drooling. He told me that I was being “ridiculous” and if I didn’t stop he was going to leave. Because talking was so painful, I decided the best decision was not to talk making the paralysis worse, and I let him leave. So he left me standing there, drooling on the floor.
Now, I am living with my mother in her friend’s house, where I sleep on the couch. Her friend is extremely poor and so is she. We barely have enough money to buy groceries or pay the electricity bill, let alone get me the medical treatment I so desperately need. It is a struggle to be able to pay for my health insurance each month. We have been living here for five months, and her friend is no longer financially able to support us, and we are going to have to leave.
I know I have not seen many of you for some time now, but that is only because of what has happened to my life. I have run out of options and I have nowhere else to turn. I know these are hard financial times for everyone, but if your families have anything to give, I would appreciate it more than you could possibly imagine.
I have already selected the doctor that I need to see. He is one of the top experts in the field, but like all of them, he does not take insurance, so the costs are extremely high. It is $1000 just to walk in the door for a consultation. This is the case for all the lyme experts. Beyond the initial consultation, the most vital component is, of course, treatment. I expect he will put me on IV antibiotics, anti-parisitics, supplements, and perhaps more. While the insurance companies must pay for part of “out-of-network costs,” lyme patients are left with thousands of dollars worth of bills for their appointments, medications, and the administration of the medicine. I am trying to find a way to deal with these costs as well as the cost of living for me and my mother, and I am out of options.
I do not know what has happened to me, or why I have experienced this severe reaction. Perhaps the oxygen being forced into my system through the HBOT pushed whatever bacteria or whatever parasites that were living in my brain into new places. Only an expert is going to be able to give me these answers and tell me what I need to do. I fear all of this may have caused permanent damage to my brain, and each day that passes it could be getting worse. I have waited for seven months, when this situation was an emergency the second it happened, and I don’t know how much longer I can wait.
I have now had to take a second year off from college, and do not know if I will be able to return next year. All I want is to be able to go back to school and live my life again. I want to hang out with all of you again like a normal person, like the person you remember in the photograph at the top of the page. As of right now, that doesn’t seem like a possibility, and I am losing hope.
If you or your family can help in any way, then you will be giving me my life back. Whether you can donate a little money, or a lot, or none at all, most of all I appreciate your friendship and your support. If you want to donate, you can mail a check to my mother’s P.O. box:
Ann Patricia Coleman
P.O. Box 10
Bedford, NY 10506
Thanks to anyone who can send something. I know times are tough, and that you don't know the kid, but he does not deserve to live like this. He needs help, and fast.