I'm new to the forum, so I'm gonna tell you my lyme story and then ask some questions pertaining to it.
I've been dealing with acute symptoms for about 7 months now, and have been under the care of an LLMD for 5 months. Sometimes I feel as if I'm moving forward and sometimes I feel that I'm slipping back. I'm trying my best (as I'm sure you all are) to effectively treat this without completely devastating the finances of my family. It's a huge burden, and I'd say that my newest curricular and extracurricular activity has become trying to figure out how to get rid of this stuff.
I got my bites in August 06. I was an avid hiker as my small central PA town is bordered on 2 sides by mountains and one side by a lovely river. There are trails all over and I hiked them several times a week for years, and spent time cleaning and maintaining the trails.Like so many, I did not see a tick. I got two bites on the back of my right leg that looked like mosquito bites. And itched like mosquito bites at first. After several days the bites turned purple/ black and began to grow.
Within a week, one was about 6 inches across and one was about 4 inches. They didn't really itch anymore, but they kept getting bigger. I had been to my General Practitioner and he thought it was a set of spider bites. Possibly brown recluse. Treated me with steroids, which I found out years later was the worst thing that could have been done for a lyme infection. Steroid treatment with Lyme disease is equivalent of pouring gasoline on a fire.
Had a biopsy performed by a dermatologist. My Insurance didn't cover it and 6 weeks later I got results that said only that I had been "bitten by a spider or some kind of insect". I then got to pay $600 out of pocket and still have a useless "punch-hole" scar on the back of my leg to help me to remember to be somewhat wary of Med folks who want to give tests and don't tell you what the test is looking for. I've got time to learn if you're digging around in my body or my wallet. Tell me. I want to know.
Anyway, within a month the bites went away. I had no symptoms at all at this point. Nothing. It went away and I thought that that was it. Over the next two years I would deal with two really bad lower back aches that lasted for a few days. Figured that it just went along with being in my early 40s. I also started dealing with an occasional feeling in my right eye like someone had plunged a needle in the right corner. Very sharp and out of nowhere. Thought that this was just eye strain. I had been to my optometrist and he said that I would need to use reading glasses but other than that, there were no problems.
And one huge thing that I had no idea was a symptom was that I lost almost all interest in reading. I am an avid reader and there are thousands of books in my house. I used to read about 20 books a year. Now it was taking me months to read a book that was a couple of hundred pages long. I thought that I was just distracted about... about.. I didn't know what. I just couldn't concentrate.
Bad news as I am the founder and artistic director of a Shakespeare theatre and a children's theatre. To do my job, it's not only important to read, but to WANT to read. This was maddening.
In March of this year, over a year and a half after my "spider bites", and after a very hectic month of work during which I had gotten very little sleep and was under quite a bit of stress, I got the worst back ache of my life. Extreme pain over my right buttocks. I felt like I had a knife in me. Went to a chiropractor that day, and he put a TENS unit on me and then did some pretty jarring adjustments. I made it through that night's rehearsals and the next morning I couldn't stand. I hurt, but worse than that I just felt like I couldn't hold up my upper body. Shaky and I couldn't hardly balance.
I was like this for twelve days and stayed on my bed or on my couch. Went to my GP and he said that it was possible that I had strained my sacroiliac joint. He sent me for Xrays which showed nothing. I then went through 2 months of physical therapy. Nice guys and they put me through the paces. My primary therapist was an MD who put me through a lot of strength training and also gave me a lot of chiropractic-like spinal adjustments. I got stronger in the back but I started getting bizarre cramps under my shoulder blades and in my abdominal wall. My neck got really stiff and most disturbing was a growing pain in the place where I had had my appendix out when I was a kid. When I sat in the car or in a chair for more than twenty minutes the back pain would begin and then the lower ab pain would start to grow.
Soon the pain had begun to really hurt under my lower rib cage. And I wondered, "Do I have cancer? Do I have MS? Do I have ALS?" I was freaked OUT. I was exercising everyday, stretching and breathing... and I was feeling worse and worse. I started to feel kind of polluted inside. I felt like something was wrong on a cellular level. I was tired and wired. Folks at work work constantly coming up and saying things to the effect of : "You OK boss?" And I'd smile and say, "Oh yeah, just getting over this 'back' thing." I was sent for an ultra-sound of my organs, and they all looked fine. But they were hurting, now. All across my pelvic region and up my abdominal wall. My twelve year old daughter asked what was wrong and I just had no idea what to tell her other than "I'll be fine."
I started burning up the Internet. Loaded in my symptoms and what kept coming out was "Lyme". I did a lot of looking around on YouTube and found all of the Lyme Vlogs. Bunches of people with Lyme who are stuck in their house and have Internet camera access. I got a lot of information from these folks and they told me what the "dead ends" would be in trying to get proper treatment. I was more scared, but I was glad to have a direction.
I went back to my GP and he said he wanted to send me to a Neurologist. I asked him if the Neurologist was "Lyme Literate" and he didn't know what that meant. I said that I would prefer to go to a MD that specialized in treating Lyme, and he said he was pretty sure that any infectious disease specialist could help me. I told him "no", I mean, he's a good guy my old doc. But he knows nothing about Lyme. He's not hostile to it, but he's clueless about it. And admits it. So I got him to write me a letter that said that he recommended that I find a Lyme specialist. I also got him to prescribe me 200mgs of Doxycycline a day.
My Lyme doc was out of the state and I wouldn't be able to see him for a couple of months. I talked to him on the phone for about an hour and it made me feel better especially when I found that he, his wife, and his sons had all been treated for Lyme and were all now highly functioning if not 100%. They were all at least in the high 90's. And he said that though I had later stage lyme, I had not had it so long that I shouldn't be able to get the symptoms back in the box. I felt re-assured.
This was a long time to wait though. My symptoms were getting worse. I upped my 200mgs of Doxy a day to 300mgs and hoped that that would help. The joints of my big toes started to tingle and ache. The knees started feeling bizarre, but mainly I was getting tired. In March I was still hiking the mountains around my town a couple of times a week. Now, getting up the stairs to my second floor apartment was becoming a bit of a challenge. I started cold sweating, and I could not take the heat of the outdoors at all. I had never been overly sensitive to heat.
And then, my brain started really fuzzing. I had fought back an anxiety disorder in the early nineties and had it in hand and was
off of medication (which had been a minimal amount of Xanax for a few years) . Now I felt anxious. And not just because of my symptoms. I was starting to feel as though I was walking around in a fog. I was constantly having people repeat things because I had trouble taking in the info. Sounds were irritating, as though the treble was cranked up on my stereo. I found that I could still recite all of the monologues that I had learned over the years, but memorizing even one new sentence was almost impossible.
I could recite my multiplication tables, but I had a hard time adding together two 2 digit numbers in my head.
My interests had reduced to 2: info about Lyme and info about Politics. I was anxious about both. I stayed at home a lot of the time and only went to the theatre 3 or four days a week. I stayed home and followed the election and researched Lyme. I didn't watch movies, I didn't read, I didn't listen to music. All three things had given me great pleasure, and now when I did them I felt almost as if I was doing an impression of my old self. They weren't giving me joy or comfort. They were uncomfortable. I used to be a rollercoaster enthusiast but I realized one day that a mild rollercoaster ride would put me in the hospital. How had I changed so much in such a short time?
I called my Lyme Doc and asked him if there was any way I could get to see him earlier. He said that I could see him in 3 more days instead of three more weeks. I had a friend drive me because I was feeling quite strange in the head, and my wife (and business partner) was taking up my slack at home and at work. My company has 7 full timers including me and my wife and four of these folks had just come in when my symptoms started. I hardly knew them. Still, they have been keeping my theatre going and they are very dedicated and completely behind my journey to recovery.
I went to the Lyme doc, and he actually spent 3 hours testing and talking to me. He was crazy expensive and does not take insurance, but just to have an MD that understood what I was going through, and finding that he had be through it, but much worse
gave me some confidence and hope;I felt better. He told me that it would be a long haul. And he told me not to expect any radical change in my feelings for at least 6 months. I do hope I see some differences in the beginning of '09.
Anyway, I got an Igenex Western Blot. Had to pay for it, of course. It eventually showed me 4 bands positive and 1 band indeterminate. This after I had had 2 negative ELISA's and another Western Blot that I had been told was "negative". So, I got on the Drug Train. My Lyme wiz upped my Doxy from 300 to 400mgs a day. 500mgs of Zithromax a day. 400 mgs of Plaquenil a day.
I also was instructed to stay away from sugar. That's fine, I'm not big on sweets. But he wanted me off breads, starches, carbohydrates. Tough. I am the sandwich king. I could spend the rest of my life and eat nothing but sandwiches. I need to eat lots of food with high omega 3s. I started eating canned Alaska Salmon. Blueberries. Macadamia nuts. I got unsweeted Whey Protein Mix.
I take fish oil caplets 3 times a day. 1000mgs of Vitamin C a day. B Complex. 100mgs of Magnesium a day. Selenium.
For the first month, I strapped in and waited for a Herx. I didn't get one. I didn't feel much better, but I got more jittery and tired. I came back the next month and The Wiz decided to take me off of Plaquenil and put me on Mepron. Yuck. I mixed it up in my mouth with whipped Cream Cheese to make sure it absorbed in my system. Doc thought I might be co infected with Babesia. I stayed on Mepron for three months along with the Doxy and Zith.
During the next month I felt better and drove myself to see the Doc. I asked him if I could direct our upcoming production of "Julius Caesar" that would be rehearsing primarily at night for the next 6 weeks. He said if I didn't do anything else but that, it would probably be OK. I had some energy and my head felt a bit clearer. I had worked on Caesar a couple of different times before, so it wasn't new material for me. This was encouraging. Also, my stage manager is a good friend, a total professional, and very supportive. I told her everything about what was up with me and she prepared to help me and to take up a lot of my slack.
I had some very good nights where I could push my symptoms far into the background. On most nights however, at the end of rehearsal I was completely exhausted. I was frightened to do the 35 minute commute home on many nights. I started to get nauseous, and I got a cough that turned into horrible wretching. Sometimes I felt as though I was gonna completely lose touch with myself mentally. Very scary feeling. Every night when I got home I would take two Ativan and an Advil Nighttime to knock myself out. I would sleep very deeply and generally woke up feeling better.
However, I was getting more and more tired. And my back pain was back with a vengence. And I had developed a constant ringing in my right ear. Often I would "feel Lyme" behind my eyes, giving me an unpleasant head ache. And I started urinating constantly, and alternating between diarhea and constipation. My energy was plunging. I was working about 4 hours a night and it felt like it was killing me.
I went to the Doc and he said that he thought that I was having drawn out Herxheimer responses. I thought that Herxes were more sudden and intense. This just felt like I was getting worse and worse. I had finally had a bit of an emotional break down during the previous week. Just dealing with pain and uncertainty for too long. And I know, I haven't had it that long compared to many. I know. But for that 20 minutes or so, it was just all too much. Too much hurting and not much pleasantness. The doc told me to go off of the ABX for 7 days. He wanted to give me a break. I was terrified to take a break, but also really scared of going on. He told me that when I went back on, it would be just Doxy and Plaquenil. No Mepron. At least for a while.
I began to regain some energy. But by the end of the week abated pain was coming back. I got back on Plaquenil and Doxy... and my show opened. That was 2 days ago. Today has not been that bad. I want to start doing some exercise, but I'm afraid I'm not ready. I want to walk around town today... even though I don't really FEEL like walking around town today. I'm taking all of my supplements and eating well. I don't know if I feel better than I did when this first started. I don't have as intense pain, but that was largely localized. Sharp pain in a few areas. I have less sharp pain these days, yet I feel that the Lyme is everywhere in my body. Aches all over and extreme fatigue. Sometimes my head is clearer than other times. The novelty of this extremely scary and painful illness has worn off. It seems like it is "me" now. I'm not trying to sound defeatist. I am working to get rid of this, but this half year has worn on me. I know that so many have it so much worse, but I just want to get past this.
I was always a "push through" kind of person when it came to sickness and I can't do that with this.
OK, if you're still with me, here's my question: For those of you who have seen improvement, what marked it? When did you know that you could be active again without "tearing yourself down"? How did you find focus? For those of you that are where I am, or worse: What gets you through? Also, has anyone had any experience with Tinitus? The ringing in my right ear is maddening, and although the other symptoms are awful, the abatement of this one symptom would so help me to get focus to work on other things.
Also, I am reading a bit more these days. I have found that reading aloud helps me to keep my train of thought. If I am gonna spend this much time on the couch, I at least want to spend the time reading some good books.
Sorry that this is so long. I wish you all well, and I thank you for reading my story.