A Story of Hope…
Hallmark worries of those who are suffering from fluoroquinolone reactions are; am I ever going to get better? And how bad is my reaction going to be? Coupled with this, is the constant struggle of trying to maintain a positive attitude, in the face of what seems to be an overwhelming negative situation. I have to admit, there are times that I feel overwhelmed at what has beset us and I am in need of hope and inspiration.
Enter Chuck. Chuck was given a six week course of therapy with Levaquin in April of 2002 for a case of prostatitis. While taking Levaquin, Chuck also concurrently took a non-steroidal anti-inflammatory. After Chuck finished his prescribed course of antibiotics he started down a downhill path that by September of 2002 left him acutely affected with FQ toxicity syndrome. Chuck was afflicted with all the telltale ADR’s, including, wide spread joint pain and muscle pain, terrible vision problems, including visual nerve palsy and double vision, neurological problems that included various skin sensations, severe shooting and stabbing pain, coupled with fear, anxiety, depression and severe insomnia.
Chuck, totally ignorant to what was happening to him, turned to the internet for help. He found information that helped him start piecing together what was happening to him. As Chuck’s ADRs got worse and worse he turned back to the medical community for help. He had test after test that routinely showed inconclusive results. Chuck related that most doctors thought he was crazy when he mentioned to them that the fluoroquinolone Levaquin might be the cause of his problems, although they never offered any other pathology for his symptoms.
Chuck had enough. Knowing that he was not going to be able to count on the medical establishment for help, he developed his own treatment plan. He knew the road ahead was going to be very long, difficult, and full of ups and downs but he was determined to get his life back. For the first year after his symptoms began Chuck took an SSRI to help ease the overall symptoms of the nervous system. Chuck could barely walk and when he did he would hurt all over the next day. Instead of fighting against his new limits he decided to work in harmony with them in order to start his healing. Little by little he started with the most basic Yoga stretches and did only very lite Yoga stretching for over a year. The Yoga stretches helped his joints remain limber despite the daily stiffness and pain he felt. When he was able to, he would hold the stretches for a longer period of time. Chuck would couple his Yoga stretching with times of meditation where he would quiet his mind and combat the anxiety, depression, and fear that would try to intrude into his life. He would meditate for twenty minutes twice a day.
After some time Chuck started an exercise routine again. At first, he would walk very short distances, or until his body told him to stop. Then he would recuperate a day or so. He eventually moved onto a recumbent exercise bike where he could lightly work his legs without straining them. After a while, Chuck started incorporating light weights into his exercise routine. There were times, especially when starting the use of weights, where he had to rest several days, to a week or more, before doing more. Chuck said that the bodily intolerance to exercise, which at first was very severe, lasted for years and he would be stopped occasionally with bouts of tendonitis, especially early on.
Looking back Chuck said it is hard to recall when improvement began as he recalled cycling back and forth for years. He would slowly get a bit better, and then the symptoms would return, then recede, then get better again, then cycling again, over and over.
Chuck shared with me that he found a discussion group about fluoroquinolones early on. At first he found the group dynamic helpful and found comfort with fellow sufferers, but after a while, he felt some of the negativity was contributing to his anxiety, cycling, and robbing him of hope. So Chuck made the decision to stop visiting the site, to avoid the contagious negativity, and turned his focus onto healing and recovery.
How is Chuck today? He describes himself as not as strong and capable as he was before floxing , but he can generally work out every other day, walk every day, and keep the bouts of tendonitis to a minimum. He still has flare ups from time to time with tendonitis, and he has permanent damage to one eye, but overall he is thankful for his recovery, considering he remembers the darkness in the beginning when he was wondering whether he would end up in a wheelchair or worse.
What is the moral of this story? We need to know that recovery from fluoroquinolone toxicity is possible, if not very likely, even for the seriously impacted. Whatever plan you choose for your recovery you must remember that a big part of that recovery is hope. Hope should not be looked at as something that optional but instead should be looked upon as something required. It is a necessary, integral, piece to your recovery, and without it your recovery can be greatly lowed down or delayed. Are you lacking hope? Do what it takes today to turn your despair into hope.