My Lyme Disease Story (written on 11/8/08)

Saturday, November 08, 2008
MY LYME DISEASE STORY (Updated 1/7)

So I am really not sure how long I've had Lyme and I don't recall a bite either? My mother has Lyme too. I figured that out after I figured out that I had it. I started to develop the same symptoms that she has had for over 20 years. This is when I knew that we had something wrong and we both had the same thing. Luckily I didn't give up until I figured it out. Here is my updated story.....I decided to make some additions to my previous story....it's long!!

First I want to say that we traveled and camped a lot when I was a child. I had several chronic health problems that started when I was young. Bad bloody noses to the point of going to the hospital to have my nose cauterized (not pleasant!) Bladder infections so bad that the doctor wanted to run tests on my kidneys (all I heard was big needle in your back and I was like hell no!), stomach problems, swollen glands, allergies, black-outs and dizzy spells, cavities every time I went the dentist (and still to this day), anxiety, depression, learning problems (sure I am forgetting a few). Now these were not just occasional problems. They were all chronic.

Fast forward to my 20's....got married and had 3 children (not necessarily in that order...LOL) For the most part I was healthy other then some of my childhood problems that stayed with me. My last son was born c-section in 1999 my grandmother died a year later. I started noticing changes in my health after my son was born. I used to joke that they didn't put me back together right since I had a c-section. But then my grandma died in 2000 and I was extremely close to her. So I was a mess. The most traumatic event I have been through. I always had anxiety and depression since I can remember. Well this put that in high gear. For years I kept feeling worse and then started to notice physical problems. I always excused them as grief or stress related.

In 2001 we moved and didn't have family around. My husband and I both worked and had 3 kids so it was stressful!! In about 2002 I started having severe stomach problems. Different then before. The pain was indescribable. Worse then labor!! Every time I would take a bite of food (no matter what it was) I would immediately get pains. They would consume my entire abdomen and shot into my back. I would load up on tums, gas pills, and motrin and pray it would go away. I did go to the hospital a few times. But nothing. I then found out that if I took acidophilus before every meal I was much better. So I did that for years. I was also having bladder problems. Having to go all the time!! Since I always had some stomach and bladder problems as a child I didn't think much of it. But then I started having memory problems. This was most odd because I was always known to have excellent memory! My family would ask me to remember things for them and it was never a problem. So I just figured it was stress and didn't think much more of it.

We moved back to our home town to be near family again in 2004. Some of this reasoning was because my depression was getting so bad. About 2005 I started to develop more odd symptoms that didn't seem related to the one's I already had. I started to get strange feet pain. At 1st I noticed it while exercising and just thought my shoes were too tight. But it got worse. I also was having knee problems. The left one would crackle when I went upstairs. My vision was getting significantly worse. I was also becoming more irritable and having bad mood swings. Along with menstrual problems. I had turned 30 that year and my doctor at the time said it was just because I was 30 now. I thought that was odd that I would turn 30 and just start to fall apart! I had lost a lot of weight with Weight Watchers earlier that year and was feeling pretty good for awhile. I got my real estate license in fall of 2005 and enjoyed working and meeting new people.

Early 2006 I started to get really fatigued and get sick a lot. It slowly got worse until I found myself staying home on the couch more then I was going to work. Everyone thought I was being lazy or depressed. I was depressed again but I was also very fatigued. It was just an overwhelming sense of exhaustion! Not like you are tired and need to sleep. It was different. I started to think something might be wrong with me. Soon after, I decided to see a therapist because my irritability and now depression were just too bad to handle. I was put on several different antidepressants. All of which didn't help and made me feel worse or have very bad side effects. One of them gave me a really bad rash and I had to go to the hospital. Now I find out I have developed sensitivity to meds. Something new! I started to gain weight and figured it was from the meds. It was really bad, like 10 lbs a month for about 5 or 6 months!! So now I am really depressed, overweight, tired all the time and slowly new symptoms are coming on. I am thinking at this point that I might be going crazy! Something weird happened to me after I gained weight. I started to get this heavy feeling in my body. My legs especially. I thought it was because I gained a lot in a short time. But now I think it was the Lyme.

Late 2006 I started getting numbness, tingling and muscle spasms. Then I started to really think something was wrong. Maybe MS, ALS, cancer runs heavily in my family?? But how could all these strange symptoms be related? It just didn't seem possible. I found a new doctor since mine thought I was having problems just because I was 30! So the new doctor did run a few tests, lupus being 1 of them. I thought he said Lyme too but I didn't see it on my lab results? He sent me for a sleep test because I started having really bad insomnia at this point. So I did test positive for sleep apnea. I just figured it was because I gained weight. He did say that my uvula (thing in the back of the throat) appeared enlarged.

I wasn't satisfied that this was the reason for all of my symptoms so I went to my husbands doctor next. He did an MRI to rule out MS and lots of blood work that came back normal. He sent me from specialist to specialist for over a year.

Early 2007 I decided to take on another job doing seasonal taxes. Real estate market was bad and I needed some money. It was going ok at 1st but then I started waking up about once a week feeling like I had the flu. I couldn't get out of bed at all. I also had arthritis symptoms and bone pain. Then while working at this job I started to have really bad cognitive problems. Just out of the blue I couldn't think straight. I was confused and I couldn't work. I couldn't remember things that people just told me. It was really scary! I knew something was wrong and the doctors weren't figuring it out. So I started researching on line. I can't even count the amount of hours I spent researching. My family and friends thought I was insane!! Every time I would come up with a new theory but my symptoms never always 100% fit the disease. I did run across Lyme a few times and it did fit my symptoms but I didn't remember getting bit so I moved on to the next disease. I read about every disease, cancer, autoimmune disease you can think of. It was insane! Eventually I ran out of things that it could be.

Summer of 2008 I started to get heart palpitations. I had the whole cardiac work up and they only found PVC's of unknown cause. I was also getting shortness of breath. At some point my list started to include temperature sensitivities, hearing problems, troubles swallowing, night sweats...and the list goes on and on. I decided I was just broken! My adrenal gland, my metabolism, my hormones, my entire body was just "broke"!! What was causing this? Would I ever figure it out? Or was I going to die? I was afraid to go to bed at night. Started thinking about writing letters to my family just in case :(

At this point I am now unable to work and can barely function most days. Thank goodness something took me back to the Lyme websites. This time I decided to read others stories. I couldn't believe how much it sounded like me and that many people didn't remember being bit. So I thought, "What do I have to lose?" I found an LLMD (special Lyme Literate doctor) and luckily for me he is only about 30 miles away! I called them and they got me in that week. He asked me to bring details about my symptoms. So I typed up a list on my computer and couldn't believe that that I had sooo many symptoms (see my symptom blog). It was an entire page long typed! At my appointment as I filled out the paperwork I check marked about 90% of the symptoms. (I think my mouth dropped to the floor!) Then he sat with me for hours and talked and listened (WOW a doctor that listened...what a concept!) We were convinced that I had it and just needed a test to confirm. But the best part was after years of being shot down someone FINALLY validated me!!!

So I tested CDC (Center for Disease Control) lyme positive in October of 08 from Igenex lab in CA (special lyme lab). If is very hard to test positive by CDC's testing criteria. They are very stricked and that is why many people test negative but still have it. They test your blood for lyme antibodies and they require 5 specific types. If you have less then 5 or if you have 5 different types they say negative. I say "why do you have any antibodies to lyme if you don't have it?" Duh!! So ticks carry co-infections (other bacteria). My co-infection tests were done by a local lab so I am not sure they are accurate? But I did test positive for Bartonella (see my blog on this co-infection).

I know my story is long....as I am sure many people with Lyme have very long stories! It is actually longer but this is the short version :) There is no cure for lyme. It is treatable with antibiotics. The bacteria can hide as a cyst & you can go in remission but it can come back. So I am not sure if I will get better. Even if it does go anyway I might have some permanent damage to my body from it. I am currently on an antibiotic called doxycycline 400 mg a day. Not sure if it is working & its only been a few months. I do have some extra days with energy but still feel like crap the rest of the days. I may need to get a new doctor to see about IV treatments. Since I have many neurological symptoms I hear IV works best. It is a very long road to recovery. Many people I have met have been sick for years and are still sick. It is possible to never get better. They go on and off of antibiotics for years. You can get yeast from too many antiobiotics so you have to take a lot of special vitamins and herbs. Also when the bacteria die they release toxins in your body. So you get sicker! So I also have to detox. Learning all sorts of new stuff!

In the mean time I am very concerned that I may have passed this to my children and husband. My youngest son being the most symptomatic right now. I am looking into the best ways to get them tested. (see my other blog about this)

I have learned so much about life in general on this journey so far. I have met so many others with Lyme that are some of the best people I have ever known! I am angry about the way we are treated from doctors and the public. And I am sick and tired of being sick and tired! But I don't think I would trade this experience for the world. It has changed me as a person. I like myself so much more now. Ok so now I just have to get better :) Thank you for reading my story!

By the way....There is A LOT of controversy regarding lyme and it is a very long story. I am acutally reading a book about it right now called "Cure Unknown". I also have a documentary DVD that explains this a lot. It's called "Under Our Skin". If you would like to watch please let me know!!