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Brenda's Story

My name is Brenda Baker. I am the 30 year old mother of eight beautiful children -- Amanda 12, Sarah 11, Caleb 10, Anna Pearl 9, Brian 8, Ariel 7, Elizabeth 6, and Micah 5. I would not trade anything in the entire world for the laughter and joy they bring into my life! I live in Derby, Kansas. I grew up in a small community in Missouri. Even though Kirksville is where Andrew Taylor Still founded the very first Osteopathic college/hospital in the world, there are many ignorant doctors. ::smiling::

I grew up on a farm in Scotland County, Missouri. Ticks were everywhere. My parents never worried about "the site." I do not know when I was bitten by an infected tick. I know I started getting VERY ill in October of 1986. I found a journal I kept from that year. I can trace a severe headache not controlled with medication to the end of September of 1986. It was my Senior year in high school. I was passing out in class, could not concentrate on anything and began vomitting blood.

My teacher sent me to a doctor and paid for the visit(I was not living with my parents at this time as I had enlisted in the military against my father's wishes; he had kicked me out of his house for that reason). The doctor who saw me said to rest. He said it was just mono. I missed 48 days in a row that semester. I went from being at the top of my class to being kicked out of school. I pleaded with them to let me continue doing as I had -- doing all the work at home and sending it back through a friend. Permission was granted and I graduated with my class in May of 1987.

I married in April of that same year. Four of my now eight children were born into this marriage. My husband, Don, and I separated in 1985. Like many other people with chronic illnesses, my spouse could not handle all the responsiblities this disease dumped on him. He said he needed his space! We are good friends but I don't think he shall ever fully comprehend what Lyme disease is or does to a person's body. Unfortunately, we have two children that test positive (Western blot).

I passed it in pregnancy. Ariel has gone into cardiac arrest more than once and has seizures. She suffers many of the symptoms ranging from joint/muscle pain to loss of eye sight/hearing from the seizures. She has the secondary rash on her body that comes as goes and migrates. She was born with this nasty rash all over her face. Micah just has the joint and muscle pain and the headaches/achines in his neck. He is still small enough he doesn't quite know how to express what he feels.

I searched for answers from MANY doctors and specialists. I only went to see Dr. Crist on the suggestion of a friend's friend . I was at a point where I would rather be dead than feel the pain any longer. He ordered the Western blot. I had my answer in 7 days -- positive in four bands. He put me on Sumycin, but I reacted. He switched to Zithromax. I did it for 6 weeks. My symptoms did not change at all except that I began having MORE pain, partial paralysis and TIAs. We then opted for the P.I.C.C. line. Vancomycin was tried first only to find myself using the anaphylaxis kit.

We tried over and over. We then move to Primaxin with good results. Did that for six weeks. I constantly had herxs with this (a good thing I was told). The seizures were getting worse. We switched to Erythromycin next for only 3 weeks due to loss of improvement gained earlier. Back to Primaxin then. I stayed on this until I left for Florida in May of '97, for sixty treatments in the Hyperbaric chamber. My daughter went also but only did 31. We both had port-a-caths surgically implanted in 1998.

Being a single mom while doing IVs was not easy! I still have mine, but do not use it presently. I had Ariel's removed December 29, 1998, because it seemed there were no medicines out there that she could take and I was the one having to flush her's all the time. That was too much for me since I was sick myself. She and I both tested positive for the Babesia. She also tested positive for HME and HGE, so the Mepron/Zithromax combination are the medicines of choice. Unfortunately, there are no doctors that I have found that are willing to monitor her close enough when her blood counts drop. I have unopened bottles in the cabinet waiting to be used.

Some may wonder how the HBO affected Ariel and I. Well, Dr. Fife from Texas tells me to be patient! I finished with the sessions on July 9, 1997. I was still really sick. Is this just a Herx or what? I felt great when I finished and was in the hot Florida sun. I returned to Missouri where the temp's were staying very low (in the 70s and low 80s during the day and 50s--60s at night). I heard the protocol had also changed. I did 60 sessions diving at 2 1/2 atmosphere for 1 hour 2 times daily. Ariel only dove once a day. The supposed protocol is now to include two Lyme cycles or 120 sessions diving at the same atmosphere.

I don't have the energy to raise any more money. I have kept in close contact with my case manager with my health insurance company. She says with the spotlight on Lyme these days, she may be able to get the company to make retro payments on treatment already received and get them to pay for the needed 60 treatments. We shall wait and see what this brings. Wouldn't that be awesome if we could get insurance companies to start paying for these treatments? I know they would definitely help some if not all the way in reducing the LD symptoms!

I want to share my "major" symptoms I either have now or have experienced in the past. I shall put them in list form: migraines, blackouts, blurred/tunnel vision, hearing loss, slurred speech, seizures, TIAs (small strokes), bells palsy, partial paralysis on one side of body, poor concentration, memory loss, tremors, neck ache/stiffness, joint swelling, muscle pain, insomnia, major fatigue, rib soreness, heart irregularities, hot shots in my feet, legs, and abdomen, depression, loss of appetite, loss of hair, feelings of despair, etc, etc, etc...

I know I am no different than most others with Lyme disease, especially those who went undiagnosed for a number of years or who have had it long term. I would like to make some friends as I have none in my area with this disease. I am perplexed at doctor's choice of ignorance. I do believe this is a choice and not a personality trait. I desire to fight this battle and WIN! Win against the bacteria in my body and win with helping to educate people who do not suffer. I am finding, however, that people don't want to learn.

I spent those 7 weeks with my daughter, Ariel, in Tampa, FL, getting hyperbaric oxygen treatments. Since my insurance company would not pay for the treatments, I had to raise the $10,000 needed to make the trip. The people in my area were not receptive to the idea of listening to what I had to say. That is, not until I returned from the trip. You see....when I returned one of our well-respected doctors who had retired had become violently ill --- you got it! with Lyme disease!!!

This is a story I wrote a few years ago. I am happy to say that since October 17, 1998, I have been pretty much free of pain from the Lyme. I don't know what happened to cause such a wonderful thing! My doctor in New York said to me, "I don't know what you have done differently in life, but I wouldn't change a thing!" I held out my engagement ring. ::smile:: I truly belive in the power of prayer and in true love. With love came much waited for peace in my life. I am thankful. I have hope now on the rough days that there is going to be a time again where I will laugh and run and play with the children.

It may not be that day, but the day will pass and tomorrow will bring better feelings. I might also add that Brian and I are expecting a baby in September. I am fearful for this child's health. We had hoped to wait at least a year. I had hoped to find "remission" from the hell I was living for a long time before I ever thought of another child. I can only trust God to take care of him and place my trust in the doctor's when this one is born. I pray for a cure...for better health care... for what I have found to come to many of you. I know we each could write our own bestsellers, but the pain in writing those books would be difficult. Keep your chin up! Keep the faith! Keep encouraging one another! Hold fast to hope! God bless.

Brenda Baker, Derby, Kansas

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