Thursday, May 28, 2009

Wow, it's been awhile since I posted! Let's see, the newspaper article was published. I was very happy with it, got a few requests from other people for names of my LLMD. I started getting a lot of jerking/tic type symptoms. Had a bad episode on Mother's Day at church. It was scary, I cried and while I was jerking, my 3 wonderful kids came and put their arms around me, it was so sweet. I felt my 2 year old kiss my belly while I was jerking about. They are the best kids a parent could ever dream to have!

I've had it occassionally since, last time was last Saturday, May 23. I've been trying to eat mainly raw foods for about 1.5 weeks now, I've definitely slipped up some, but doing pretty good. Last weekend, I had really really sore legs and feet. To the point that it was extremely painful to walk downstairs. I also have been getting some more numbness in my finger tips and a 'vibrating' sensation in my left leg.

I've been depressed for the past 2 weeks, some days worse than others. A couple days I basically cried all day. No particular reason. I used to do that consistantly in 1997-1998. Depression is the monster in the dark I've been fearing since. I also had more anixety this past weekend, mostly on Monday thought. Also last Fri or Sat, I noticed these small purplish/pink itchy bumps on my thighs, mostly my right thigh. I took a picture so I have evidence!

Today as I was putting on my old ripped T-shirt and running type shorts (the irony!), I had the urge to try on some jean shorts. They looked good on me. I look tired, but in other ways, perfectly healthy. No one would have a clue how miserable my existance is.

I thought to myself, "I'm 30 years old. Most 30 year old moms put on jean shorts and a cute shirt and take their kids to the park to play and talk with other people."

Instead I'm holed up in here dreading sorting clothes today. I'm switching over from winter clothes to summer and it's just overwhelming to me! It sounds silly, but I had my husband get them out of the Attic a week ago and I'm still struggling to finish it. For my defense though, I was gone Saturday and Sunday, had to go to a funeral, baby shower (which I laid down a lot of the time) and a family thing on Sunday (which I again laid down most of the time, my legs were so horribly sore).

Oh, I also had terrible insomnia Saturday night. I used to get that a lot, usually I don't have problems sleeping though now.

I ordered Utopia Silver (colloidal silver) last week that is scheduled to arrive today. I'm hoping it works. I figured that if it makes my heart crazy like the Doxy, then it is die off and I won't be afraid to restart the Doxy.

I did have some heart symptoms on Monday that were kinda scary. Then I had some yesterday, but they just felt like PVC's to me, not that those are fun, but not as scary as the skipping stuff for a 10 seconds straight. Or tachycardia.

Well, I should go, haven't eaten much today and I have people telling me that I'm starting to look bad weight wise again, so I need to eat to appease them!

Son's LLMD appointment

Well, I called last Friday, May 1 and was able to make an appointment (they had a cancellation) for Monday May 4. We drove 9 hours on Sunday and stayed in a hotel for the appointment the next day. Chicago traffic was a little rough, but not too bad for a big city. Not nearly as bad as we anticipated.

The hotel was fun, they had water slides, a sauna, hot tube, a nice wading pool for the kids with fun stuff, fitness center, nice breakfast. All for $71.99 plus tax!

Wisconsin was nice. We'd never been there. Lots of beautiful lakes.

Monday morning we were trying to hurry through breakfast, I did NOT want to be late. We met another family from Ohio as they saw James' Ohio State hat and came over to see if we were really from Ohio, or just Buckeye fans!

We made it there and there was a man standing in front of the receptionist's desk writing. I figured he was a patient and just stood 'in line'. he didn't move and the receptionist was talking on the phone seemingly ignoring him, so I sat down and waited.

Soon this 'patient' went behind the desk and made a few calls, then I realized he was the LLMD! How embarrassing! I guess I'm used to the white coat doc's, lol!

The doc was fantastic, we all liked him. There was something about him that makes you trust him and know that he is very intelligent and can actually help you. I can't really explain it.

I explained Elijah's symptoms including his complaint of heart pain. He looked at the Igenex results and said that with that 39 band present and the others that he definitely has Lyme. But he also said that Elijah may get well very quickly because he is a kid and his immune system is better than an adult's.

So that was the GREAT news!!

Then he examined Elijah, asked him where his heart hurt. Elijah pointed to his left side near the sternal area. The doctor listened to him for a while and checked his pulse, then he listened again, asking him to hold his breath at one point, then checked his pulse and finally listened yet again.

He told us to get him to a Pediatric cardiologist as soon as we can. He said that not everything is from Lyme. He said that Lyme can surely affect the heart, but his pain and fatigue may not be due to Lyme.

I could have cried, both from fear and from joy. I have thought for many years now that he may have a heart defect. The pediatricians always told me that he sounded 'fine' after listening for all of 10 seconds. yet when I listened to him, he just doesn't sound 'right'. Even our 2 year old has a better sounding heart than him, both of our girls sound the same.

Plus I knew how he didn't breathe well at birth. He had poor to no tone. Did not move, did not breathe, color was poor. He seemed to be dead. He needed to have O2 at birth and he is the only one of the kids who did not nurse for awhile after birth, maybe an hour or more??

He's complained of chest pain since he was 5 or 6 (can't remember). He actually just says that his heart hurts. And the pedi said he was fine.

I could kick myself for not demanding that someone do SOMETHING. But I listened to the doc instead of my intuition.

We have an appointment on May 18 to see a Pediatric Cardiologist. Hopefully sooner if they get a cancellation.

I am in the process of trying to get him out of school and into homeschooling, that way if he has another episode (sometimes gets tachycardia seems like), we will just take him to the ER. We all want to know if he is OK.


So while this was totally unexpected...I guess I am very thankful for this intelligent LLMD's ability to pick up on it.

So, this is where it stands right now. Will update if anything else happens.

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!

Saturday, March 28, 2009

Well, I waited to take the Doxycycline until I'd seen my new PCP, who prescribed a holter monitor for the skipped heart beats/ tachycardia.

I got that put on yesterday (Fri, March 27) and took it off today. I only had one little flutter with it on. I did take the Doxy yesterday (100 mg) and was shaking all over I was so afraid. This morning I did not wake up with the heart palps like last time though. I worried that I might and laid in bed for almost an hour after I woke up, but nada!

I took the Doxy again about an hour and fifteen minutes ago.

I want to try 2 I think on Monday. I plan to stay on 2 until after we get back from Wisconsin on April 7.

Our son's Igenex came back.

IgM: 41 IND
IgG: 39 IND, 41 +++

So it appears he has been exposed to Lyme. We will see what this new LLMD thinks.

When I saw the 39 Band, I had a sick feeling. Everything I've read about that band says it is the most specific for Lyme of all.

I just want our son to be happy and healthy. It's scary when your child says that their heart hurts, or they are so tired all of the time.

I feel awful that I may have passed this awful infection to him. But I know that I was misdiagnosed years before he was even conceived.

Depending on whether this new doctor believes that he has Lyme for sure or not, we have decided not to have any more children.

I've always wanted 4, but God's plan is perfect, and maybe that is not in His plans. Us humans think we are so smart, huh =)

Well, I need to do some dishes that I've been ignoring for too long!