Newspaper article about me and my life with Lyme Disease

I printed two letter to two local papers and sent them. The next day (yesterday) I received a call from the larger paper stating that they wanted to do a story immediately to have in the paper on Sunday!

I'm trying to gather as much factual information about this disease as possible. I'm a quiet person, and while I don't want my 'business' everywhere, I know how much I have personally gained from other people's stories in newspapers and TV, ect about Lyme.

I hope this can help at least one person get an accurrate diagnosis. I wish I had read something about how poor the Lyme tests are and all of the possible symptoms and misdiagnosis' of Lyme years ago.

This story MAY be able to help someone to prevent a lifetime of suffering and from passing this disease on to their children!

It is Wed, April 29 and they are coming tomorrow morning. I'm nervous and afraid I will be as bad mind wise as I have been, I hope I'm not too 'out of it' tomorrow and I'm not on any pain meds or anything, it's purely the Lyme and co!

I will update this tomorrow after they come!

Well, now it's Fri, May 1 and the interview went pretty well, lasted 1 hour 15 mins, reporter was great.

I kept forgetting what I was saying, this has been happening a lot lately. I've also been getting tremor like things as well. My head bobs around sometimes, my hands jerk. It's kind of scary, wondering how bad I will get.

Anyhow, she called and said the article will run on Monday, May 4 and will be on the front page of the Lifestyle section. I'm anxious to see it, I hope that it is informative and maybe someone else will see themself in me and seek help from an LLMD.

Good news, I called today and we were able to get Elijah in to see an LLMD in Wisconsin this Monday!!! So we are leaving for WI early Sunday morning.

My brother just saw this same LLMD in WI yesterday and was very happy with him. It would be great if Elijah, my brother and I could all be getting better soon. Though I know I will take the longest because I have been sick for so long now.

One question the interviewer asked was if I am ever angry that I have been sick for so much of my life. I honestly said sometimes, but that it's Elijah possibly being ill that really makes me feel awful.

I haven't really thought a ton about how hard and sad my life has been. I started realizing it I guess at my class reunion. Everyone went to college and had the 'normal' college life, fun years of dating, weddings, ect. I had none of those. Funny thing was when James and I went to the courthouse to get married, I was a little sad, but NOTHING compared to what I'd been through. We never had a wedding b/c all my life my mom said it was stupid when someone has a kid togetyher and then gets married with the whole white dress and everything.

So I didn't. Course later I heard our fantastic pastor talk about how that doesn't matter, because Jesus took everyone's sin away. I remember when I got pregnant, my life was out of control. I felt weird all the time, was convinced God hated me and that is why I felt so awful all the time. I didn't think I would live through the pregnancy. Just felt like death. But I was with James because I knew/felt like he loved me and didn't feel like anyone else cared one ounce about me. He still loves me unconditionally and I know he would move mountains for me if he could.

Lyme just takes so much: your mind, your body, your joy and it even tries to take your soul.

I don't know that everyone who has Lyme suffers to the same degree as I have, it's been an intense journey and even now I am sometimes afraid of fighting for my life. Afraid it will try to take me in the end...maybe if I am passive, I can at least live to see my children grow up.

The past several weeks with the new symptoms of numbness, jerkiness, parkinson's like movements at times and severe memory/difficulty with word recall, I'm not sure my life will be spared if I don't start fighting with everything I've got.

I just feel so weak.

Wednesday, April 29, 2009

Well, It's been quite a while since I've posted. I received my holter monitor results on April 17 which showed PAC's and PVC's with one Atrial run. I felt pretty good during that 24 hours and did not have the extended period of my heart skipping, so I still don't know what my heart is doing during those times.

I had an Echocardiogram last week which showed within normal limits as far as they could tell. The Cardiologist wrote that it was a difficult study based on patient's size. The tech kept complaining that I was so skinny (and I've gained 10 lbs, no longer technically 'underweight', I don't know why she kept saying it).

So at the end, the Cardiologist wrote that it was a technically difficult study. Which leads me to wonder how accurate the results are. Ejection Fraction showed 55% which is on the low side of normal, but still normal. However, there were 5 blanks out of 13 on the test, someone explained that they only examined my systolic function, people with CFS often have normal systolic function, but diastolic is abnormal.

Sigh.... I've gone back and forth with treatment options. Now that I have the cardio reports though, I feel much more comfortable about restarting the antibiotics. I did oil of oregano yesterday and 2 HUGE cloves of fresh garlic.

After I had a lot of feeling weird and memory problems. I put my hand on the refrigerator door and couldn't remember how to open it for a few seconds, I just stood there dumbfounded. Again happened with typing, couldn't remember how to make my fingers push the keys down.

Laid in bed most of the day, watched Dr. Quinn movies and a Barbie one that my 2 year old put in.

Well...I will go for now =)

April 2, 2009

Well, I had my first detox foot bath today. Had some anxiety off and on throughout the day.

Tonight I was feeling 'jittery'. My puslse was about 58-60, so I knew it wasn't true anxiety, my breathing felt 'off'.

I then realized I am having air hunger, taking big breaths without trying, an icky, yucky feeling.

I checked then, I had it Feb 19, 20 and 21 (i believe, may have the 18 too). Then again March 9, 10. Then now, April 2.

If I get night sweats again, I guess I will know that I do have Babesia like Electrodermal testing revealed.

Argh!

I can't wait until my appointment tomorrow, I just hope I feel better.

Wednesday, April 1, 2009

Well, let's see what is new. The weather was great today, so that helped. I felt OK today. Earlier was worse. My legs are really tired today. Like I just need to sit or lay down. The past few days, the fingers in my left hand are numb, esp the tips. Not sure what that is all about, but maybe my shoulder is still out? I had a lot of shoulder pain on my left side last week.

I haven't taken the Doxy since Saturday. I had a lot of throat/chest tightness followed by gobs of sinus drainage since taking it last, so I figured I would not take it Sunday (the throat stuff was really bad, I couldn't even sing at church) and take it Monday. Monday morning I had another bad panic attack. I haven't had these in a long time, like really bad ones.

So I was just praying for another answer, or if antibiotics are the answer, then so be it. I just need to know. For whatever reason, after I had settled down enough on Monday to lay down again (around 7:30 am I think) I started thinking of these frequency remedies for Lyme I had read about. I searched about them on Monday much of the day and spoke with someone who has taken them with success.

I remembered my alternative MD mentioning a woman who has a frequency type machine in the area, so I called his office and left a message. They got back with me yesterday and I called her this morning.

This may be the answer. I'd rather not say what the machine is, or how it works right now because I don't know a whole lot about it. I have a free consult with her though in 2 days.

My first question was, "have you ever treated a patient with Lyme Disease". She said she bought the machine ONLY because her daughter was sick with Lyme Disease. She had been misdiagnosed with Chronic Fatigue Syndrome (as I was).

She said she is now well.

I was fairly excited much of the day. Of course I am already starting to worry if it's safe due to high die off, ect.

But I am going to first have the consult to discuss with her at least.

If this works and my son can also heal without medication, this would be wonderful. If this thing works, I'm going to get one and help others. I don't think I could possibly do anything else in this life while knowing there are so many people silently suffering for years and years and years with Lyme.

I have my first Ionic Foot Detox tomorrow at my uncle's office. I'm nervous, not sure what to expect.

My husband did it last week. The WEIRDEST thing is when I woke up the next morning I could smell cigarette smoke. I personally cannot stand the smell and I could not figure out where it was coming from. I inched closer to my husband and his neck smelled like cigarettes!

He and I don't smoke, but he lived with his parents for 18-19 years and his dad is a moderate/heavy smoker.

Wow! That was pretty unexpected. He said he has been more irritable since the detox, and I teased him that as the nicotine is clearing his tissues, he is going through withdrawl...

Ah...well. I am one tired monkey tonight. I must go to bed now..will update later!