Lyme Disease Story (1)

I was bitten in April of 1993 on my right forearm. I never saw the tick, but several days after being out hiking, I developed a red bump like a mosquito bite, that then turned into a large rash like nothing I have had before. I saw a Lyme specialist doctor in Maryland at the insistence of a coworker friend who had Lyme, but I was foolish and did not take all the antibiotics. I thought I could avoid getting lyme disease through ‘positive thinking’. I really did not think I had it.

Two weeks of ABX made me feel better anyway, and the rash went away, and so I went off the drug. About 3 weeks later, the disease hit my body and my brain like a tornado, and my whole life changed from that point forward. I have never been the same since, and absolutely knew at that point, that I never would be. I had never felt anything like this.I tested late, one was the western blot, another was some urine test. Both were negative. I have not done the other tests yet that are recommended, and still need to – especially for co-infections.

Repeated later courses of antibiotics and even antidepressants seemed to do nothing to rid me of the Lyme, so I ended up exploring alternative treatment options ( herbs and natural supplements ) which has allowed me to function well enough to still take care of myself to a basic degree.  Lyme has affected it seems, every part of my body over the years, except for maybe my little toe! Even my big toe has been affected by this disease! Rather than list here every one of the roughly 50 different symptoms I have experienced since 1993, I included them in another forum member’s post, which is listed below in my diary section.

My brain was of the first to be hit. I developed horrible anxiety, depression, and an obsessive disorder. It worsened a bipolar disorder I had, which had already been triggered off a few years earlier by finding my brother suicided in our family’s garage. The spirochete also affected my left temporal lobe, where it caused a seizure disorder I experienced mostly at night while trying to sleep. This was detected by several EEG’s I had done.

I developed nightmares, and night hallucinations along with a strong internal tremor. Additionally, I would experience a frightening numbness that would occur at night in my extremities. So, nighttime became my biggest dread, and continues to be the time when my worse symptoms occur. Some of my own family members and friends became a cause of despair for me, because they couldn’t see anything wrong on my outside. I wanted them to believe and support me, but so often did not feel this was happening. I felt even more abandoned because of this.

I couldn’t figure out how all this could be happening to me, and be so invisible. What everybody saw ( and still sees, to some extent ) was that I had a stronger determination than ever to go on with and enjoy life to the fullest. This persistence, coupled with getting little sleep, having wired nerves, and a manic mental condition worsened by the disease, somehow conveyed to people that I was a high energy, healthy person. And yet, I was miserable. Many saw the large, strange rash on my arm, but even that was not taken seriously.

I have since come to accept that just as I did not take the advice of my coworker friend seriously, who also appeared cheerful,bubbly and healthy on the outside, ( and who had advised me to see a Lyme doctor in the first place ), neither is anyone else likely to take me seriously – unless they happen to personally experience this disease for themselves – Something I don’t wish on anyone!

Lyme has something to teach all of us, I am convinced. I have learned it is better not to judge another person who is sick. It is better to hear what they SAY, and not go on what they look like or act like on the outside. If they say they are hurting, who am I to say they are not?

A chicken after its head is cut off, often runs all over the place. Does that make it a well chicken? I have learned that sickness cannot be stereotyped. And I should try not to abandon a person who is suffering by saying careless things that imply they really aren’t as sick as they feel.

Contracting Lyme disease is what finally drove me back to God. Lyme may be my own private hell, but until I experienced that darkness, there was just no way I was going to have a clue what God’s light is really about. I always hope I will be fully cured some day, but in some ways I realize that if I am, I may feel too good to talk to God anymore!

I am very grateful when He allows me to experience even just partial remissions. I realize it is entirely up to Him what happens to me. And I believe whatever works best for Him is what works best for me – whether it feels good or not.

Having this illness is what finally forced me to begin greatly simplifying my life, and removing as many stress producing things as possible. “Stuff” and clutter had to go. My living expenses had to sharply decrease, so I could afford to leave my job and survive on disability payments, but still afford all my supplements.

I also had to radically change my diet – letting go of sugar, dairy, gluten, and a other foods that I was sensitive to in various ways. I needed to do this in order to help balance out my bipolar swings as well. Cigarettes had to go as well. Drinking was something I had already ceased doing four years before becoming sick, and knew I could never go back to.

Lyme disease caused me to do a complete overhaul on myself. This lyme forum has been a huge blessing, after 17 years of being pretty much alone with this disease! It has provided me a place finally to talk to others about every symptom ( physical, emotional and spiritual ) that arises from having Lyme disease, and not feel ashamed or fearful of being judged. I find and am also able to give as well as receive, true help and support to plenty of fellow sufferers who can fully relate to the confusion and despair – but also, the good, that comes from having Lyme disease!

Update on this. I was recently reinfected in either August or September of 2011. I can’t be sure if this was due to a tick or mosquito bite, but I highly suspect the latter. I have not been tested for this reinfection, but am certain that this is what it is, verses simply being a flareup of the original infection, as this feeling and these symptoms are unmistakable to me!  I am now fighting this new infection with ABX lyme treatment, and hoping to at least get back to where I was!

V.M.

(Anonymous Patient)

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Posted in Lyme Disease Stories