Our son’s story is a sad one, but one with a good outcome, hope and further awareness.
He contracted Bb and possibly a co-infection while working for an entire summer in an outdoor camp for inner NYC kids in the NJ Appalachians. He was 20 at the time. Being outdoors a lot of the time for both work as a geologist--and pleasure--myself, I was aware of LD and warned him about tick bites. The staff training included tick checks. But the staff nurse was not a local, and when he came down with a sinus infection in the middle of summer, put him on a week of Abx. He "recovered."
Upon return to NB Canada, school (4th year of University) became increasingly burdensome as he suffered memory and attention issues. He had been a college soccer goalie, but he could not stay active because of physical pain. Depression and even drinking small amounts of alcohol are not good for LD victims. At the time we thought he was just trying to find his way. He decided to take a term off and work for a while and go back the next fall with the same results--concentration problems and memory issues.
Then my wife and I were in the north on assignment for a year, and upon our return found him dealing with severe depression. He was in pain continually and “feeling like an 80-year old” and no one thought he was ill. He looked OK. We had him assessed at the emergency clinic. A 20 minute talk with a psychiatrist on staff will get you on a load of meds that are not really good for you and highly addictive. No testing, just a “clinical diagnosis” after a short interview. How ironic.
How does this make sense? The thing was, I knew about the disease and that it was endemic in the area where he had been, but I did not really know anything about short and long term symptoms. I knew something was not right and started researching LD and had him self-diagnosed, but did not find a doctor to confirm it. Testing through the Canadian system is inadequate as well, so that went nowhere.
After watching a W-5 episode about the disease on CTV I was convinced that I was on the right track and contacted the doctor in a neighboring province who was featured in the documentary. A phone call, a day's drive, and a one hour interview about the facts--endemic area, tick bites, progression of symptoms--and assessment confirmed our suspicions. He had Lyme. This was more than 2 1/2 years after he was infected.
He is a big man, and large doses of Abx and an anti-malarial drug were started. As predicted he did react and initially got worse, then slowly started getting better. In conversations with the doctor we decided the anti-depressants were not necessary anymore and actually blurred the symptom assessment. Taking him off those was a good decision, but also was a terrible ordeal for a few weeks as the weaning-off resulted in terrible side effects. Doctors have no problem putting people on these for years and years, but are wary about prescribing long term Abx. This is the irony of many of these cases. People are pumped full of drugs of all kinds without a proper test, through elimination and trial and error. But for some reason long-term Abx are evil?
To make a long story short, after 14 months of Abx (a different one for the last 3 months because of a suspected co-infection), anti-malarial drugs, a good diet (although I did not at the time know about sugar, alcohol, and caffeine), and supplements, slowly but surely he got better. Through this all he worked his job most of the time, because of a very understanding friend. At the end of his ordeal met a wonderful young woman whom he will marry next August. At this time he is 25 and almost 5 years past the initial infection. I would say he is 99.9% better, but we are keeping a close eye on his health. He is still dealing with losing the weight he put on during the time of depression and anti-depressants. He is active again--soccer, hockey, and walks with his wife-to-be. So THERE IS HOPE even if you have lost 5 years of your life.
I think he was--we were--lucky. He had a very strong immune system to start with, friends to help him, a doctor who chose to treat his symptoms without relying on tests but on clinical diagnosis, the right combination of meds from the start, and a mother who knows how to put together meals that strengthen the immune system. AND we prayed a lot for healing.
Since then we have talked to at least a dozen people with similar stories that we have been able to help along the path of healing. But there are friends with diagnoses like Parkinson’s who are not willing to push for that extra step to get properly tested "outside" the officially accepted channels, and I think that is a crime in itself. THEY TRUST THEIR DOCTORS BLINDLY. And there are those whose symptoms are way more complicated and/or advanced, or those who have been invaded for longer periods or already had a compromised immune system.
We are seeing some improvement in doctors who are willing to look seriously at the possibility of LD, but there are still many people in the health care profession and in the Department of Health who are not seeing the real danger of ignoring the wide-spread threat of contracting the disease. And because of this we are spending hundreds of thousands of dollars on testing and specialists without looking at the reality of Lyme disease. No wonder health care systems all over the world are in dire straits.
Rory Pronk, Canada