Hi Kevin,
I’m sorry to hear about your being infected with Lyme disease. Unfortunately much of the medical field (and the general public) downplays the seriousness of Lyme disease. I am convinced that the CDC – because of their illogical recommendations to the medical field – is somewhat responsible for the rapid spread of the disease and the fact that so many (with Lyme disease) become so very ill.
That may seem somewhat harsh, but I speak from personal experience.
I was infected with Lyme disease (I had the bull’s eye rash) in May of 2000 but didn’t seek medical treatment (until I became extremely ill some four years later) because I was under the false impression that Lyme disease caused nothing more than a few days of flu-like symptoms and possibly some arthritic joints. I wasn’t worried because so many people told me that Lyme disease wasn’t a big deal; besides, arthritis runs in my family and I had suffered with that since I was in my twenties.
Not going to a Lyme-literate doctor immediately was probably the biggest mistake I’ve made in my life. It nearly killed me and the disease infected my central nervous system.
I began having memory loss and frequently got lost in familiar places (like my neighborhood). I had great difficulty controlling my extremities and sometimes couldn’t walk without holding onto something. My speech became slurred and I often appeared to be intoxicated to others. I began to have problems with my eye-sight and often had sharp-stabbing pains shooting throughout my body. I always felt completely worn out – as if I had just completed a marathon – and simple tasks would leave me winded and nearly unable to breathe.
Like many with Lyme disease, I was misdiagnosed (several times) before I insisted upon a Lyme disease test. I was even informed – by the doctor – that I had bone-marrow cancer and I began the task of preparing myself (and my family) for my probable death.
Three months later – after taking large doses of antibiotics – the doctor sent me to an infectious disease specialist who proclaimed me to be cured, though he cautioned me that I could have lingering symptoms for up to two years. (He couldn’t explain how someone could be “cured” but still have symptoms)
I went back to work and six months later was extremely ill again. This time the doctor (who had treated me for Lyme disease) refused to treat me for Lyme disease again (thinking I had been cured) but couldn’t explain my illness since the myriad of tests (for other diseases) showed up negative.
At this point I began to take Lyme disease a little more seriously and did some research to find a Lyme-literate doctor. I lucked out and found one (only 1 hour away) who immediately put me on large doses of antibiotics.
After six months of treatment I made yet another huge mistake: I was feeling better (and needing money badly) so I insisted that my doctor release me back to work.
I played this stupid game of going back to work, only to become even more ill in a few months (and going out of work) for the next 3 years, until I finally became so ill that I simply couldn’t continue on.
In that time, my Lyme-literate doctor had retired, so I had to find another Lyme-literate doctor for treatment. I’ve been on high doses of antibiotics ever since – and I am doing better than I was – but the damage has been done and it is highly unlikely that I’ll ever be capable of going back to work.
I’ve lost a lot to Lyme disease – my health, my ability to think like I used to, my job, and my sense of self-worth. I almost lost my house and my illness has caused a great deal of stress for both my wife and I. My savings is gone; I went over one full year without any income and I found out that some of my “friends” weren’t friends at all (once I no longer had money and nice toys).
There is no aspect of my life that Lyme disease hasn’t damaged or ruined.
I tell you this because I want you to take Lyme disease with the upmost seriousness.
If you have the bull’s eye rash, you have Lyme disease. The rash doesn’t always show up but when it does, you have Lyme disease.
Go to your doctor on Tuesday and insist that he/she runs a Lyme disease test. Do not be surprised if it shows up negative – there are a lot of false negatives. Insist that the doctor puts you on antibiotics – be very firm about this.
If the doctor refuses to treat you for Lyme disease – find a doctor who will.
Check out
www.lymenet.org and go to the discussion groups to request a Lyme-literate doctor in your area. You will probably have to travel some distance to a Lyme-literate doctor, but your health is well worth it. Don’t be surprised if the Lyme doctor does not take insurance – it’s still worth it.
Now for the good news:
Most cases of Lyme disease are treatable – I don’t believe Lyme is curable – if you receive treatment in time. According to my Lyme doctor, the disease rarely attacks the central nervous system (lucky me, huh?) and is typically limited to headaches, flu-like symptoms, aches and pains, fatigue and arthritis in one or two major joints.
The sooner you get treatment, the less symptoms/problems you will have down the road.
You might consider Pam Weintraub’s book “Cure Unknown: Inside the Lyme disease Epidemic” for more information.
A couple of other things to note:
Don’t be surprised if your Lyme doctor frequently changes your medication: the spirochetes (the Lyme bacterium) are notoriously difficult to kill.
If the dose is doing its job, you will feel absolutely horrible (it’s called “herxing”
when the spirochetes are being killed off (they release their toxins upon death, which makes you quite ill). (I am not positive that newly infected people with quick treatment herx, but I thought you should be prepared if it does happen)
As is the case oftentimes, what works for one doesn’t always work for another person. Severely decreasing my intake of sugar seems to make a significant difference for me – but it may not help you at all.
You can be infected multiple times. We do not become immune to Lyme disease by being infected.
Don’t let Lyme disease ruin your love of the outdoors; just use common sense while enjoying outdoor activities:
Wear light-colored clothing (pants tucked into your socks) and use insect-repellent. Check yourself frequently for ticks (deer ticks are about the size of a pin-head, so check very well) (have someone check those areas you cannot see) and check your pets as well.
I wish you the best of luck and
Good Health.
