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 Post subject: Mary's story
PostPosted: Mon Feb 18, 2008 11:03 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
March 13th 2004 it was beautiful sunny day in Kansas City. A welcome break from months of cold. I was at my boyfriend's parents house in Raytown, which is a normal average neighborhood in Kansas City. They have a big yard with a small stream that runs through it. At the time there wasn't any water in it as we hadn't had any rain or snow for weeks. We were sitting on the patio enjoying the lovely day when I felt something bite my right cheek. It stung and I brushed away whatever it was. By Monday late afternoon, I noticed a red bump around the bite area. It itched a little too. I came home and put some ointment on it to help calm it down. Tuesday morning I noticed it hadn't changed it was still inflamed and itchy. I noticed at that point what looked like teeth marks in the middle of the bite so assumed it was a spider. It made sense, it was early spring and they had just gotten the lawn furniture out of storage. It didn't get any better as a matter of fact it got worse. It was a large reddish, purple circle on my cheekbone. It was also hot to the touch. By Friday I went to see a nurse practioneer friend of mine. She has been a lifelong friend so she looked at it thought it was my sensitive skin reacting to the bite. She put me on an antibotic to prevent skin infection, gave me a perscription for a stonger topical cream and off I went. I took all 10 days of the anitbiotics but noticed I my gland on the side of the bite was swollen. I made an appointment with a doctor. He talked to me about and asked me questions about it, I told him my concern with the gland. He asked me when I got the bite, which by this time, was 14 days before he kind of looked concerned and said,"wow, that's some reaction!" He put me on another 10 days of the same anitbiotic and sent me on my way. I asked him about that gland and he kind of brushed it off as something that wasn't really related or serious. It took at least a month for the bite to go down. There was a mark there for 6 months or more.

New Years eve 2004 I was out to lunch with my friends and had a sinking feeling all day long about my relationship. Like I needed to get out....I couldn't explain why I had these feelings. I went home and we had a nice dinner, he was hooking up a new home theater that we had purchased earlier that day. He knocked over a candle and I lost it! I broke up a 3 year relationship right then and there. I was very depressed and cried for months. Slept alot but just thought it was depression. None of this seemed unusual at the time. I was mourning the loss of a very serious relationship. Knowing what I do about this disease, I wonder now if the disease wasn't part of the reason I lost it over an accident and broke up with him. First symtom I missed-irrational behavior.

April of 2005 my mother was diagnosed with Alzheimer's. It was a very sad time and again I was very upset and cried but who wouldn't when you find that out about your mother.

Something very amazing happened that spring. I didn't have my normal allergies. I had been a horrible allergy sufferer since age 21. I would allergy induced asthma. I used inhalers only when it got out of hand. I hated taking any kind of medication. I hated the side effects of the steriods so I would use them very only when I was having a real severe attack. When I didn't have my normal bout in the spring I just thought it wasn't a bad year. No one else seemed to be complaining that much so I thought it was a good year. I had allergies in the fall too. Again, nothing ever kicked in. By this time I was thinking if I could grow into them at 21 why couldn't I grow out of them at 42? Your body goes through changes every 7 years so it made sense. Wrong....doesn' happen that way. I found that out when I went to my first holisitic doctor.

The summer of 2005 I noticed the heels of my feet were sore like they were bruised. I thought it was a certain pair of shoes I wore alot, so I got rid of them and it went away. Second symptom missed. Same summer I noticed I had a toenail that appeared to have a fungus problem which again I thought was a shoe problem so I replaced my walking shoes. I was an avid walker and walked 5 miles almost daily but a minimum of 4 days a week. Lost the toenail but the fungus seemed to clear up. I noticed that my walks were taking more out of me my knees hurt more. I've had chronic knee problems since I was in the 7th grade so I really didn't think too much about it. I just thought it must be arthritis setting in. My dad has had knee problems and said he noticed arthritis starting right in his 40's which was my age. So again missing another symptom- sore joints

Winter of 2006 I bought my a condo. I wanted to repaint everything before I moved in so I got started and worked from right after work until 11 most every night. I was very tired but thought it was just all the extra work I was doing. Unusual for me to ever be tired, I've always been very high energy. But again reasoned away a symptom, I'm older and I'm doing alot of extra work. Another thing I started to notice was I wasn't remembering things at work like I used to. I thought I just had too much going on in my life with my parents health issues, the condo and work stress. Again missing another symptom- memory loss. At the same time I noticed my vision was getting worse but I thought, you're over 40, it's natural at this age to not be able to read small print. Thinking back I realize it was more than just the small print. My vision overall was blurry. Another symptom reasoned away-blurred vision.

In the summer of 2006 I started taking golf lessons. I was taking 1 class a week for all of July and then moved to 2 classes for the next 6 weeks. I noticed that my hands hurt which didn't make sense to me since I spend hours a day typing. I talked to some friends of mine and they said, "you're using different muscles. You'll get used to it. Get a stress ball and strengthen them." It seemed to help. So I continued to play and practice 3 nights a week. I noticed my forearms felt weird but I just thought I'm not used to this. I played 9 holes several times and had some pain but thought I just needed to get used to using a new muscle group.

September 2nd was the day everything came unglued. I played 18 holes for the first time. By hole 16 my left hip and right shoulder had some noticable pain. I didn't think that could be right, remember I'm someone who works out on a regular basis. The pain got worse throughout the week and I went to a chiropractor. I have an old injury that kicks up every so often so I just thought it was my hip going out again. She put me back in and suggested that I see a sports massage therapist. I left and 48 hours later I had a pain in my shoulders. It was pretty uncomfortable but I thought it would go away. It got worse, to the point where I couldn't lift me arm up to put shirts on. If I did it was like I had to pop it back in place. My brother said you know when you get adjusted it sometimes stirs toxins up. At the same time I was having alot of trouble with an employee at work so I was under alot of stress. My shoulder got pretty bad so I made an appointment with the massage therapist. I went told her about the pain and she worked on me for an hour. I felt better when she was done. Two days later I noticed my jaw felt weird. By the next morning I couldn't open my mouth. It was so painful! I thought I had a toothache so I called the dentist office which was closed since it was the weekend. It lasted for the rest of the weekend and seemed to be getting better so I thought it must be the toxins settling in my jaw. Another symptom reasoned away-jaw pain. By this time I was in horrible pain that would get worse at night. I was up for hours everynight trying to figure out what was wrong. I could sleep in my bed because my shoulders hurt so badly. Then my knees got so painful that they couldn't touch without sending me into blinding pain. I would move from my bed to my couch to a chair. The pain wasn't as bad if I was sitting up as it was when I was laying down. This would go on for hours until I was so exhausted I would finally fall asleep for an hour before I had to get up for work. I knew at this point something was very wrong. I went out on the internet searching for answers to my pain. I came across a couple of things that my symptoms fit, lupus and rheumatoid arthritis. I went back to the massage therapist and the chiroprator (they're both in the same office). We discussed what my thoughts were on the pain. I had mentioned to both of them about the "spider" bite and I was pretty sure that had something to do with it. I felt like my gland had never gone back to normal so that must mean something. The chiropractor gave me an immune support supplement. I had the same bout with the jaw pain, the shoulder pain and neck pain was added in for good measure. I was a wreck! I could sleep through the night. I would wake up every night in horrible pain- what I would classify as a level 10. The scary thing is that I have a very high pain tolerance.

At this point I knew I was in serious trouble and needed to find out what was the cause of the pain. I'm not a fan of the medical profession as a whole and didn't want to be given pills and sent on my way. I have taken great pride in how healthy I've been and how little medicine I've taken. Outside of allergy medicine, which I fought taking but had to at times to control the asthma that came with the allergies. I knew I didn't want to see a traditional doctor so I started looking for a holistic person. I found one on the internet and her website said she didn't treat with drugs or surgery, she looked for the root of the problem. Bingo! I knew I had found someone that had the same objective as I did. I made an appointment to see her and the quickest I could get in was two days before Thanksgiving. This was the middle of October. I figured I'd made it this far I could make it till then. The day before I went to see her my right hand started to swell up and it hurt to try and bend it. I went the next day and told her my whole story showed her my hand. I mentioned that I thought this might have something to do with a bite I had 2 1/2 years ago. She talked to me for an hour before she examined me. She even took notes! After she examined me we sat down and she gave me the list of things she thought it might be, lupus, rheumatiod arthritis, MS or Lyme Disease. She ordered tests and sent me with a list of immune support supplements and told me to stop dairy. Dairy causes inflamation and to help prevent any further flare ups I should take it out of my diet.

I left feeling very sure that I was going to get this figured out. Thanksgiving I had dinner for 8 people and by then end of the night my hand was so swollen and hurt so badly I could only keep it in one position. I went to bed and woke up in the middle of the night in horrible pain and sick to my stomach. I thought I had given myself and all my guests food poisoning! I was sweating, but cold at the same time. I started to see spots and thought I was going to pass out. I crawled back to bed and tried to go to sleep but the pain was too bad. I got up the next day, my hand was still swollen and hurt. I was very upset and short with everyone. I just wanted to cry!

I got all my blood work done that week and got a call the next week from my doctor saying it was in fact Lyme Disease and a couple of co-infections and I have an elevated rheumatiod factor. The doctor thought the elevated RA is due to the active Lyme's. I remember thinking this was a good diagnosis. Little did I know at the time how bad it really is. I went back to see the doctor and we started on a treatment plan of all holistic medicines. I started ramping up on the meds at the end of Decemeber and by the first part of January I was adding in the last supplements. The weekend of January 6th I started noticing that I had a shortness of breath while I was sitting down. I had tried to work out at my normal pace that morning and I thought I had just overdone it. Then the pain in my chest started. I knew from what I had read and what the doctor said that Lyme disease effects your heart so I put it in the back of my mind. The next couple of days I still had the symptoms and added tingling down my left arm. By Wed. I decided to call my doctor who sent me to the ER right away. I was admitted and hooked up to an EKG, they took gallons of blood, did a chest xray. All of it came back normal. I kept telling them I had Lyme Disease and I was being treated for it. Of course the combination of the disease I was claiming to have and knowing I was being "treated" by a holistic doctor made me a nut job right off! I stayed overnight against my will. I live half a block from the hospital. The ER doc was in total disbelief that I would even consider going home. When I told him I would come back in the morning he said, "you can do what you want but I can't promise you won't have a heartattack." To that I replied, "and staying here gurantee's I won't?" I was passed off to a team of doctors one of which kept wanting to treat me for asthma!!! I kept saying, "I have Lyme disease. Do you know anything about that?" Of course all of my tests came out fine including my treadmill test. I had asked a med student, who was the only one that took any interest in the Lyme's if the attending was going to do anything about the Lyme's to which she replied, "well Dr. H. says that it's a very expensive test and if you aren't going to follow up in our clinic she isn't going to do any more." I was in total shock!!! My response was,"Tell Dr. H. that with that attitude I wouldn't even consider following up with her!" She came in right as I was being discharged and gave me a prescription for Doxycycline. After I got home I started doing even more research and found a forum of people who were suffering form this disease. Many of them way worse off than me. But they all advised to find a Lyme Literate MD. Ten days after I started on the doxy I went to a Lyme's Assocation meeting. The guest speaker was a leading llmd in the Kansas City area. She was talking about what a serious disease this is and all the other things that it can cause. She also said that if you're taking 200mg of doxycycline you're wasting your time. I got the names of doctors from the association and started calling. The one that is the closest to me is a year to get in. When I heard that I wanted to cry. A year! All I could think of was what could happen if I waited a year. I continued to search, I called the guest speaker and couldn't get in to see her for months but set up the appointment anyway. She also is totally out of pocket, no insurance. I kept looking and found another recommended doctor and was able to get in to see him right away. He agreed with the first diagnosis and started me on very strong antibotics. I have been under his care since the end of January. I feel confident that I am going to get this under control. I have not had any major pain flare ups since Thanksgiving. I am also seeing my holistic doctor to help keep my system in balance after taking all the antibotics.

The good Lord has helped me every step of the way with this. I believe He has had His hand in it all along the way, from finding the first doctor to my negative RA tests. My faith and the support I've had since all this has started has made me appreciate my health, my family and friends. I also know that I will walk away a stronger person spiritually, mentally and physically.

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