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
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 =)
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 =)
Thursday, April 2, 2009
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.
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
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!
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
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!
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!
Tuesday, March 24, 2009
Tuesday, March 24 2009
Well, I went to see my Alternative MD today. He said he will certainly try to support my body nutritionally while on treatment. I asked him to muscle test me for Doxy. He hesitated and stated that because it is a medication, that most likely it will be negative.
He tested it and to his surprise came out very strong for me. He smiled and said, "wow, I didn't expect that!" He then tested for allergies to it (none). He then tested to see how many per day I needed. It came up 4 (400 mg/day).
He again said that while it was a lot, it seemed to be what my body wanted, but stated to take it as the LLMD prescribed.
Yesterday, I had a bad day. My stomach hurt for most of the day. My lower back also hurt, like a burning pain. I didn't eat or drink much because of it. I haven't had night sweats in 2-3 nights now, which is good.
We still haven't heard from Igenex about Elijah's test. I'm so anxious to find out. I hope we find out tomorrow.
My eyes hurt today and I think I'm going to get ready for bed very soon. I need to shut the computer off, it's really hurting my head.
Good night.
He tested it and to his surprise came out very strong for me. He smiled and said, "wow, I didn't expect that!" He then tested for allergies to it (none). He then tested to see how many per day I needed. It came up 4 (400 mg/day).
He again said that while it was a lot, it seemed to be what my body wanted, but stated to take it as the LLMD prescribed.
Yesterday, I had a bad day. My stomach hurt for most of the day. My lower back also hurt, like a burning pain. I didn't eat or drink much because of it. I haven't had night sweats in 2-3 nights now, which is good.
We still haven't heard from Igenex about Elijah's test. I'm so anxious to find out. I hope we find out tomorrow.
My eyes hurt today and I think I'm going to get ready for bed very soon. I need to shut the computer off, it's really hurting my head.
Good night.
Sunday, March 22, 2009
Sunday, March 22, 2009
Ugh! I am so tired of the night sweats! I remember slightly waking up last night and taking my shirt off, but when I first woke up topless this morning and felt my still damp shirt laying beside me, I remembered.
I did not have a fever today though, so that is good. It was 98.6 a little while ago.
I am really really tired today. Just utterly exhausted. I just want to go to bed and wake up well. I don't care if 2 years away. I don't feel like I'm truly alive usually anyway. I'm just having a case of the blahs this evening. Just feeling sorry for myself.
I just feel like this 'thing' should have been treated so many years ago. My children may have it, we will find out this week what Elijah's Igenex Western blot says. I'm so scared.
He wanted to watch Under Our Skin, so I let him last night. I stopped it in various places and we talked of the content. He said he wasn't afraid. He has no idea how afraid I am for him.
I don't want to see him sick and hurting. Knowing that I gave it to him, is just a horrible tragedy.
I know that I've been sick for far too long to remember...to really truly remember how good life can be. But he's never been 100%. If he doesn't test positive, I will be shocked.
The weather was sunny and in the 50's. I thought about how active I used to be as we walked out of chuch to see kids playing/running. How good it felt to feel the wind in my hair as I ran. How freeing it was to be alert and happy. Not to be frustrated in a mere conversation because I cannot remember what I just said or what I wanted to say or the name of a simple object.
I am now 30 years old, but often feel 30-40 years older. My mother, in her 50's, enjoys much better health than I.
So many of us are silently suffering, hidden under misdiagnosis'. I was for many years. Even when I was well enough to go to college, I placed self imposed limitations on myself. Bedtime was strict at 10 o clock because I feared getting so ill again.
I worried immensely when I was working night shift in the NICU that somehow I was going to get sick again. I was more tired, but just attributed it to having young kids. My cognitive function then was miles ahead of where I sit today. I could not safely work in a NICU today. I couldn't remember the important things. I got forks out today for lunch twice (within 2 minutes) because I'd forgotten I'd already done it. I've burned so much food in the past few months because I cannot remember that I have something cooking if the children need me for a sec.
I had a lot of muscle twitches today. I did Thursday too. That was the deciding factor to start the Doxy. As I sat in bed wondering if I should risk trying it, my hand spasmed and index finger twitched suddenly. These happen quite frequently, but I know it is not normal.
I just feel exhausted this evening. I went to church today, came home and ate, got on the computer for awhile, went upstairs and read a book and laid in bed for awhile. Not exactly an exhausing regimen I would say!
I did screw in a couple of screws for the drywall downstairs while James held it. Otherwise I feel worthless today.
Oh, I did get my hair chopped off yesterday. I am to tired to comb it everyday. Since getting it highlighted last summer for the first time, it's been so dry, so I got about 12 inches cut off. It's going to be much easier to deal with, I can tell.
Well, I should try to have the kids get baths, they were in the woods, and I don't want to risk them getting poison ivy, I know how miserable that is!
I did not have a fever today though, so that is good. It was 98.6 a little while ago.
I am really really tired today. Just utterly exhausted. I just want to go to bed and wake up well. I don't care if 2 years away. I don't feel like I'm truly alive usually anyway. I'm just having a case of the blahs this evening. Just feeling sorry for myself.
I just feel like this 'thing' should have been treated so many years ago. My children may have it, we will find out this week what Elijah's Igenex Western blot says. I'm so scared.
He wanted to watch Under Our Skin, so I let him last night. I stopped it in various places and we talked of the content. He said he wasn't afraid. He has no idea how afraid I am for him.
I don't want to see him sick and hurting. Knowing that I gave it to him, is just a horrible tragedy.
I know that I've been sick for far too long to remember...to really truly remember how good life can be. But he's never been 100%. If he doesn't test positive, I will be shocked.
The weather was sunny and in the 50's. I thought about how active I used to be as we walked out of chuch to see kids playing/running. How good it felt to feel the wind in my hair as I ran. How freeing it was to be alert and happy. Not to be frustrated in a mere conversation because I cannot remember what I just said or what I wanted to say or the name of a simple object.
I am now 30 years old, but often feel 30-40 years older. My mother, in her 50's, enjoys much better health than I.
So many of us are silently suffering, hidden under misdiagnosis'. I was for many years. Even when I was well enough to go to college, I placed self imposed limitations on myself. Bedtime was strict at 10 o clock because I feared getting so ill again.
I worried immensely when I was working night shift in the NICU that somehow I was going to get sick again. I was more tired, but just attributed it to having young kids. My cognitive function then was miles ahead of where I sit today. I could not safely work in a NICU today. I couldn't remember the important things. I got forks out today for lunch twice (within 2 minutes) because I'd forgotten I'd already done it. I've burned so much food in the past few months because I cannot remember that I have something cooking if the children need me for a sec.
I had a lot of muscle twitches today. I did Thursday too. That was the deciding factor to start the Doxy. As I sat in bed wondering if I should risk trying it, my hand spasmed and index finger twitched suddenly. These happen quite frequently, but I know it is not normal.
I just feel exhausted this evening. I went to church today, came home and ate, got on the computer for awhile, went upstairs and read a book and laid in bed for awhile. Not exactly an exhausing regimen I would say!
I did screw in a couple of screws for the drywall downstairs while James held it. Otherwise I feel worthless today.
Oh, I did get my hair chopped off yesterday. I am to tired to comb it everyday. Since getting it highlighted last summer for the first time, it's been so dry, so I got about 12 inches cut off. It's going to be much easier to deal with, I can tell.
Well, I should try to have the kids get baths, they were in the woods, and I don't want to risk them getting poison ivy, I know how miserable that is!
Subscribe to:
Posts (Atom)