I had a huge relapse in my Lyme symptoms starting mid July and I’m just now starting to feel better. It was quite a shock and disappointment to have so much pain and fatigue again after starting to feel so much better. I had a lot of sleepless nights again full of pain. I missed a bunch of work and found myself getting angry and depressed. This wasn’t how it was supposed to go. I had it all planned out. I was progressing through the disease quickly. My doctor said I was “on the fast track”. So why did I get so sick again?
I’ve heard many people talk about getting a huge relapse after feeling well, but I thought that couldn’t happen to me. I’ve worked so hard to get well. I’ve researched and studied. I’ve taken all the meds and supplements I was supposed to take. I’m 100% compliant on the Geno type diet. Why can’t I get well? One of the answers is simply that it’s going to take more time for my body to heal. I’ve been sick for at least nine years and possibly for around fifteen, even though I was only diagnosed 1 1/2 years ago. The real question is why would I think I would get well in only a year? After I calmed down a bit, I did a survey on one of the Lyme forums I belong to. The results were these: If you’ve been sick 1-2 years, it tends to takes about a year to recover. If you’ve been sick longer than 2 years, it takes anywhere from 2 – 10 years or more. This made me feel a little better but I still found myself restless and depressed.
I finally realized that I had been “waiting” until I got well to get on with my life. I’ve been fighting relentlessly against the disease, but I forgot about me! It’s really easy to kind of sleep walk through your life when you are in as much pain as I’ve been in for the last year and a half. It has often felt like I was just trying to survive the day or night. I just kept thinking I could hang on and soon my body would be mine again. But since my timeline didn’t match up to reality, it was time to rethink this crazy way of living I’d gotten so used to.
I’m starting to accept this disease. Not give up or give in. But surrender to the fact that I have no control over how fast (or if) I heal and let my body do what it has to do, without any added pressure from me. When I think about it, that’s what I’ve been doing. I’d given my body a deadline and when it didn’t accomplish the task by my arbitrary date I was not only disappointed, I was angry with it. Is that anyway to treat this body of mine that has been working so hard? I wouldn’t treat anyone I know like this. I don’t stand for it when others treat me in this way. This must stop if I’m ever going to find peace. It’s time to wake up.
When I was first hospitalized last year (before I knew I had Lyme disease) my brother was very concerned, helpful, and generous. The trouble started after the diagnosis. He started out by being confrontational and argumentative. What kind of test did I have done? Did it show actual bacteria in my blood? What kind of treatment am I getting? Am I seeing an MD? I just presented the facts as I knew them and described my treatment. He was really alarmed that I was going with an herbal approach as opposed to a traditional antibiotic treatment. His voice was raised, his face turned red, and his arguments seemed muddled and contradictory to me. He kept saying that I had to understand he’s a man of science… But, I thought, oh well he’s just over reacting because he’s really worried about me. But the tension just got worse between us.
In case you don’t know, recovering from Lyme disease (and its co-infections) is very complicated and most people feel a lot worse before they feel better. Once your body starts to fight off the bugs you really start having a lot of symptoms. I’ve had the worst pain of my life as well as extreme fatigue, fuzzy thinking, and trouble with most of my organs. So whenever he saw me I’m sure I didn’t look like I was getting better. In fact, it might have looked to him like I was getting worse.
The last time I saw him was at my mother’s death bed in January. We never talked about my illness, but every time I said anything he snapped at me. One day he just started yelling at me about something and it ended badly. He made it clear that he wanted no further communication with me. So, I haven’t talked to him since the funeral.
How could anyone be so angry about another’s choice of treatment or lifestyle? He’s always thought my diet was strange, I can’t imagine what he thinks now. There’s nothing I can do or say, so in a way it’s easy. But I miss him so much! He used to be my good friend as well as my brother. We’ve always disagreed about things but just let each other be. I just hope someday he comes calmly back into my life again.
I’ve started to Garden again. Just an hour at a time, but it means so much to me to be outside doing something I love. I was diagnosed with Lyme disease about a year ago and have been unable to do much more than a little yoga and the basic walking needed in everyday life. At the end of an hour of weeding & trimming I was pretty exhausted and needed to lie down and rest for a while, but I was ok. I was able to do the same thing the following weekend with similar results. So I’m thrilled!
I was always such a physically active person before I got sick. I used to go on 60 mile bike rides, kayak, and hike. I slowed down gradually over the last seven or eight years (that’s about the time I got the tick bites that made me sick) until last year when I ended up in the hospital. I feel so grateful that I’m actually getting better. I’m working 6 and ½ hours a day at a desk job now. I’m able to cook and shop for myself. And now I’m starting to garden again.
There is something so satisfying to me about working out. I think one of the reasons it feels so good is it helps me release pent up emotions. It’s always been the way I “let off steam”. So being unable to exercise has been really frustrating and also a little enlightening. Since I couldn’t just exhaust my body until the emotions let go of me, I’ve had to find other ways to work through my sadness, anger, and frustration. I’ve had to face people and situations that I would have literally run from before. Now that I’m getting well I hope I don’t forget the lessons that being sick have taught me.
My mother died last month. She had a stroke two and a half years ago and then another massive stroke three weeks before she died. My Dad decided to bring her home from the hospital under Hospice care for her final days and I joined two of my siblings in caring for her the last five days of her life. It’s a wonderful experience that I would do again if the situation presented itself, but it’s not for the faint of heart. It’s very difficult physically and emotionally to care for a body that is dying. But it’s also incredibly rewarding. It felt like the greatest gift I’ve ever given my Mom (and my Dad).
One of the hardest parts was living in my Dad’s house. My Dad is eighty one and their house, a three bedroom split level, is completely cluttered with years of accumulated purchases and gifts. They seldom throw anything away. I have chemical sensitivities (Explorer/Non secretor) and the house was full of scents, molds, and dust in every room, in every cupboard. I lived there for ten days and each day I got a little sicker. The cleaning products, the perfumes, and the “soft” water were the worst. Thank goodness no one smoked!
Eating was a problem. As most of you know, when you leave the safety of your home it’s hard to be 100% compliant. But, I kept it simple and cooked for myself as much as possible. My family was kind and tolerant about my food choices (except one, but that’s a story for another time). I’m recovering from Chronic Lyme Disease, and they all know how sick I’ve been, so they wanted to support me in whatever I needed to do to continue on my road to recovery. I’m constantly surprised at how little vegetables and fruit “normal” people eat. I’ve been eating this way for so long I forget. The rest of my family seldom ate any veggies except a few pieces of lettuce from a bag (ugh I can’t stand that stuff; it smells really weird to me). And fresh fruit would go almost untouched. But, of course everyone was “stress eating”, lots of chips, candies, and pastries were consumed. And years ago that would have been what I ate in a stressful situation. Who could blame us; we were literally facing death.
All in all, I’m so happy I could help and so happy I could come home to my scent free, fresh food stocked, home in the Redwoods.
I was diagnosed with Lyme disease after having a number of severe symptoms that put me in the hospital for a number of days last March. I’ve learned a lot about the disease since then and have come to realize that switching to the Geno Type diet actually started the whole process of discovery and healing.
The following is taken from this site: http://lymebook.com/blog/the-recovery-process/herx-reactions/herx-reaction-fundamentals/
Most Lyme Disease sufferers know of the Jarisch-Herxheimer reaction as a “herx,” or “getting worse before you get better,” or a “healing crisis.” The herx reaction is documented to take place in Syphilis, Lyme Disease, and a few other spirochetal illnesses, all capable of evading the immune system. The reaction is named after two scientists who discovered the phenomenon. Adolf Jarisch (1850-1902), was an Austrian dermatologist who published his description of the reaction in 1895. Karl Herxheimer (1861-1944) was a German dermatologist who published his description of the reaction in 1902.
The definition of a herx reaction is an increase in the symptoms of a spirochetal disease (such as Syphilis, Lyme Disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal therapy is started. In the case of Lyme Disease the herx reaction is an increase in the symptoms caused by neurotoxin circulation and inflammation:
In other words if your immune system is starting to fight off the infection you could feel a whole lot worse for a while. I believe this is what happened to me when I started the GTD. I had been eating right for a B secretor, but my health had been going downhill for about 5 years. I didn’t know I had been infected with Lyme disease. I just knew I was really tired all the time and thought I was having a really difficult menopause. So when I started eating like an Explorer things really started to happen in my body. So many things got better almost immediately. My nails became stronger, my eyes brighter, my skin improved, and I lost a little weight. But other things got worse. I was becoming more fatigued and my gut problems got even worse. Eventually I ended up with strong heart palpitations and high and low blood pressure. After I was diagnosed with Lyme I thought the reason I got so sick was that the disease had “peaked”. But, in truth I was having a herx response because my body was healing!
Many Lyme patients have reactions, like I did, when they start taking medications. Many people feel as if they are going to die, I know I did. But my “herx” began before I started any medication. The change in diet was enough to get my body to start on the road to health. It was a very rocky road for the first few miles, but I seem to be getting better faster than most people with the disease.
Thank you again Doctor D’Adamo!