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 Post subject: Brett's Story
PostPosted: Mon Feb 18, 2008 10:58 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
This story begins back in 2003 on a warm summer afternoon. I was working in cuyahoga falls ohio near a heavily wooded area known as the cuyahoga valley. I had kept hearing these god awful screams coming from the woods and sound of dogs barking. To me it sounded like coyotes attacking a deer. I had seen coyotes in our area before so I armed myself with a shovel knowing how mean they could be. I just couldn't sit back and listen to this animal get attacked and possibly die without doing anything. The screams were getting to me at this point. I'm in my 30's now and I hadn't been into the woods since I was 14 years old. Well this was the worse mistake I had ever made. I had made it about 5 minutes into the woods when I felt this excruciating pain on my thigh. Ouch!! I looked down and saw this black furry creature that resembled a bumble bee, but it wasn't. This thing was biting into my leg so I immediately swatted it off. At this point in my journey to save the deer I turned around because I thought I had stumbled upon a hornets nest, which I do have a great fear of. When i made it back I looked at my thigh and realized the disgusting creature had bitten a small chunk out of my thigh. The wound started to bleed and became very swollen soon after. To this day I have no clue what that creature was but that is when the lyme story begins.

about a week later I noticed this wound would not heal and had a very small reddish rash forming around it. I had shown it to several people but they said " aww that's a spider bite". As I look back I remember that this wound formed a scab that did not heal for almost 2 months and itched all the time. I had never gone to see a doctor because it never really bothered me enough to visit one. Within about 2 months of the bite I started to have very very slight stomach pain. The pain was very slight and I had to visit my doctor because it didn't go away after a week. They gave me nexium or something and said it was a slight stomach ulcer. After they tested me for pylori which commonly causes stomach pain. The test came back negative so I didn't think anything of it. After another week I realized I was becoming very tired in the afternoon so I started taking naps everyday. about another week later I awakened in the middle of the night and couldnn't breath. So I took a hot shower which seemed to calm me down. This turned out to be a panic attack. Now it is about 3 months since the bite which has healed and gone away, and I had another night of awakening with a panic attack and unable to breath. So I went and saw the family doc again. He listened to my breathing and gave me 14 days of doxycycline and said it was bronchitis. So the so called bronchitis went away for about 3 weeks and seemed to return.

As each week went by I started to notice new symptoms. It is hard to recall the exact order but about every two weeks I was back in the doctors office to try and figure out why I was aging so fast at the age of 30. They had done every type of test possible which always came back that everything is ok. I guarantee my doctors office was calling me a hypochondriac behind my back. Throughout the day I would see small flashes of blue and white light that would appear for a second and go away. I had spent hours late at night trying to figure out on my own about what was going on with my body. This is when I tried to put the blame on chemicals in my food or workplace. So I started reading all the labels of everything I used or ingested, everything from shampoo to cocacola. The first culprite that I came across was aspartame in my diet coke that I drink everyday. I swore up and down it was the aspartame and told my doctor that is had to be the artificial sweetener known as aspartame or nutra sweet. I had been drinking it for years but all the internet searches I did of my symptoms came up as aspartame, multiple sclerosis, syphilis and lyme disease. So at this point I quite eating and drinking anything with aspartame. Well the results weren't what I expected. Instead of drinking artificial sweetener I drank sodas with regular sugar. I had no clue It was lyme disease but this explains why my symptoms became even worse. The borrelia bacteria(lyme bacteria) loves sugar. After about a month of no aspartame I went back to it and things seemed to calm down a bit.

Now we are about 3-4 months since the bite. My symptoms were beginning to pile up. There are too many to talk about but i'll list all of my symtpoms below. Many of them can't even be explained with words but i'll do the best I can. And remember I had no clue it was lyme disease at this point. My family doctor was tired of seeing me and kept trying to pawn me off on a neurologist which I could not afford at this point because of no insurance. He had tested me for all sorts of diseases such as syphilis, hiv etc.The gland in my neck on my right side, just below my ear and next to my jaw was beginning to bother me. It hurt only when it wanted to. And the doctor always said it felt normal. Next came the facial tingling and numbness only on my right side of my face. And somehow it seemed to spread into my eye. At this point it felt as if it spread all over my body but mainly stayed on my right side. I have no clue why but it did. At this point I wasn't seeing just small flashes of light but about 15 symptoms for my eye alone. My peripheral vision was very distorted and objects that were still seemed to move or flicker. When I looked up at the sky I saw all sorts of sparks and streaks of light similar to a tv on a dead channel. Falling asleep at night had become next to impossible and my hobbies had all been completely ignored. The slight depression ranged from not wanting to wash my car to thinking that the entire world sucked. After a while you will become used to the symptoms and even start to think you are just getting old. By now my legs were becoming weak early in the day and the numbness had spread to my thighs. Taking a nap at 2pm had become my routine. But as the symptoms became worse I noticed my nap was slipping closer and closer to my wake up time. In the beginning I was taking naps at about 5-6pm and now they were moving closer to 1pm. The naps were very important because they were the only temporary relief of my symptoms. All the energy I had was used for work only. I owned my own business so i couldn't afford to take a 2 year vacation. My days at work were completely unproductive. I spent much of my time staring off into space and when I had to get up and do something I would forget what i was about to do and walking felt strange like you were in some type of fog. My coordination was terrible and often I felt as If I had to grab onto something before I fell over. Spelling had become extremely difficult and thinking of words in a conversation was next to impossible. I had forgotten how to spell some of the most simple words.

Now we are about 3 years into this and my family doctor finally admitted he thought it was multiple sclerosis. This was an answer I refused to believe. The last culprit on my personal list of late night research was lyme disease. I mentioned it to my regular doctor and he said he has never seen a case of lyme in all his years. Laughinly he didn't want to test me for it and almost didn't want me coming into his practice anymore. I asked how many of his patients have multiple sclerosis and he said about a hundred or so. This was insane. I told him about how his lyme test wasn't accurate anyway which I learned from my late night research. And he said is was very accurate, he mentioned that lyme doesn't exist in ohio. Now this had turned into some type of argument. I told him that the map from the cdc for lyme was outdate(1997) and it showed the lyme stopping in pennsylvania. I asked why it wasn't here and we are about 50 miles from pennsylvania. He had no answer. My final request was for him to take my blood and send it to a lab in florida known as bowen research. He told me it was a waste of money and that I should see a neurologist. I told him this was my last request and that I would never come to see him again or bother him. So we did the test and the results were surprising. Bowen research wouldn't give me the results directly and I kept calling my doctor. I felt as if he was going to tell me it was negative in order to prove a point in our argument. A week had gone by and no phone call. I had become frustrated at this point and went into the office and asked the receptionist for my results. She said they couldn't give me my file. I told her that if she didn't give me a copy of my records I was going to cause a huge scene. So she looked for my file and said it was back on the doctors desk. After she made photo copies I took them and left. I was amazed what my test results said. It was positive for borrelia bacteria which is the cause of lyme disease. My test came back 1:128 which is the highest on their scale. This was the biggest relief I had ever had. This had explained my 3 years of misery. I also happened to notice that my regular doctor had written notes on my test results. He had marked down some phone numbers for the cdc etc. He finally had called me and said he was going to give me 200mg of doxycycline for 21 days. I laughed and told him I had done the research and that I will need double the dose for about 6-12 months. He told me that the cdc said there was no such thing as chronic lyme disease and that my test was questionable. He said that was all he could give me. Well I took the antibiotics and eventually made it out to a lyme doctor in pennsylvania.

My lyme doctor has been treating me to this day and I'm pretty much symptom free. My last symptom is a very slight depression which could be a permanent result of the lyme. My lyme doctor(LLMD-lyme literate medical doctor) is going treat me for a few more months beyond my symptom free stage. The 21 days of doxycycline seemed to have no effect on the lyme bacteria from my regular doctor. My lyme doctor had prescribed 400mg of doxycycline for an unspecified amount of time. I was on that prescription for about 3 months and only saw minor improvement. For the last month I have been on 3000mg of amoxicillin and i'm to the symptom free point now. Moral of this story is don't trust all doctors and be skeptical when it comes to the cdc. If I had taken their route of 21 day treatment then I would be back at the beginning of this story in misery wondering what is wrong with me. They are covering something up and we may never know. All I can say is that their treatment protocol is an absolute travesty. Don't let this happen to you. At this point I am very skeptical if things such as Multiple sclerosis, chronic fatigue and figromyalgia exist. They might all be caused by the same thing. We may never know. Below are all my symtpoms. What i've come to realize is that everyone with lyme has their own unique set of symptoms.

Thanks to everyone on this site for all the help, quidance, insite etc, throughout my miserable journey. I hope everyone gets well and writes the cdc to tell them their treatment protocol sucks!!

Lyme symtpoms

Eye

blue flashes of light

white flashes of light

dark spots

sensitivity to sunlight(wore sunglasses even on cloudy days)

peripheral waves(hard to explain)

static tv vision

transparent worm vision(floaters?)

image burn in

shadow figures in the corners of my eyes

things moved that actually weren't moving

halos around lights at night

lighting effect off in the distance at night

dizziness in very bright places such as stores or malls

trouble focusing

flashes of light at bedtime when I closed my eyes

rest of my body

tingling facial mainly

numbness

painful gland

stabbing sensations

feeling of bugs scrawling on my body

feeling of walking through a spider web constantly

restless leg at night

afternoon tiredness

neck pain

pain in muscles of right arm

weakness in leg muscles

trouble spelling

brain fog

trouble speaking

dizziness

bad coordination

confusion

anxiety

weight gain

trouble falling asleep

feeling of someone tapping on your shoulder

tingling in thigh on right side

constant urination

bad hangover from small amount of alcohol

irritability towards end of day(anger)

confusion when driving

bad muscle twitches constant

heart palpitations

muscles fatigue quickly

tiredness

depression

feeling of water dripping on skin

sugar craving

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