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!

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.

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!

Fri, March 20, 2009

Well, I survived! I felt better after 2 hours, knowing I would be OK. felt OK last night, my left forearm felt a little achy, but may have been from something else. Also had some congitive issues making supper, but that sometimes happens anyhow!

this morning, my heart was racing, my hands looked like I'd dipped them in water they were drenched with sweat! Feet were sweaty. ugh!

I started feeling panicky then, wondering if I should go to the ER. Then the skipped heart beats started and I don't freak out about them as much anymore since I get them a lot and haven't died yet! Within 10-20 mins I felt better. I drank some water, used the restroom and sat down for awhile.

Was this a herx?? I don't know. If it was I sure know that I am sticking with 100 mg for now!

Anyhow, I'm feeling better now, I'm going to go eat a grapefruit.

3/19/09 I started treatment today!!

Well, after waiting over the weekend to start treatment (we had plans to go somewhere that involved walking outside last Saturday), I waited as it was sunny in OH this week and then I wussed out.

I have a fear of medications, side effects, life threatening reactions, you name it. I have never regularly taken medication in my life. My husband on the other hand isn't afraid to try anything, but he has been a type one diabetic for nearly 19 years, and has taken insulin every day since.

It hasn't been even a half hour since I took it, so I'm still shaking (physically). In a few hours I will be fine. I am proud that I did it, I started worrying that I would have to go to counseling for this medication fear.

We are hoping our son's Igenex will come back next week, if not it will be the week after. I'm very interested to see what it says. Nervous too. It would surely explain some of his behavior/fatigue, but at the same time, I would never want him to have this. I already feel so guilty knowing I may have passed this to my precious babies. Of course I didn't know I had it, but still.

Well, I will update later when I'm feeling a little better and I haven't reacted to the med for sure!

Monday, March 16. 2009

Well, I had my long awaited appointment last Thursday, Hurray!!!

I was prescribed Doxycycline 300 mg/day. I was planning to start it today, but chickened out. I started worrying that the exercised induced asthma I had in high school may have been caused by the Doxy I was on in high school for mild acne.

I just spoke with my mom and she said she is sure that I took 1 or 2 bottles total, so I am sure now that it was not causing it, since the asthma lasted for at least 8 months.

I just watch Under Our Skin again and I am ready to take it now. To think I could be feeling better soon...wow!

I've had a low grade fever for the past 4 days. 99.4 today. I used to have a lot of low grade fevers over the years, on three occassions, I didn't even realize. Twice I was at the doc's for a routine physical and was asked if I felt OK. I said yes and was told that I had a fever.

So I wonder if I often do have one and just don't realize it.

I guess too, I am really scared about having some type of psych herx, read about a woman who started beating her kids due to a psych herx! That is really scary!!!

I don't think that would happen, I hope the worst that happens is I will be achy and flu-like. Just no tachycarda/anxiety/depression. anything else I can handle!

I am cutting my hair for Locks For Love when I start treatment. It's long and usually I am to tired to deal with it, so it will be a new beginning for me!

Oh, I am also having itchiness behind both knees again. Was a little itchy on my chest today, another reason I didn't want to take the abx, if the rash got worse I wouldn't know if it was a drug reaction or not. So if it's still there tomorrow, I think it's safe to assume that if it gets worse it is probably the meds then.

Well, I need to get going....

Tuesday, March 10, 2009

Well, today has been quite a day! James usually gets our son up and he overslept, the alarm didn't go off (or so he says!) and he was very late today for school.

I went to see my alternative MD. I'd forgotten how much I love that guy! He is fantastic! Very knowledgable with the desire to continue learning constantly. He was very receptive to me going to see my new LLMD and it turns out, he may have spoken with him once!

He said he spoke with a Lyme doc in PA a few years ago about an ALS patient. Someone told him to call the LLMD, as he may be able to help.

LLMD said to put ALS patient on Tetracycline and another antibiotic, and sure enough, he improved!

He muscle tested me today and my organs are much better than they were in 2007. He was surprised how much better my adrenals were! I told him that back then, I could hardly sit still. I enjoyed the appointment today because my mind wasn't racing, and I could focus on what was going on.

He is going to be a GREAT resource for me though during this, I can tell.

He told me about some of the alternative therapies I could try that he has to maybe help.

I asked if he would like to borrow Under Our Skin (he wrote down the name of it) and he said he would love to. So I'm going to bring it with me when I see him again in 2 weeks.

I asked this doctor what strain of Babesia showed up in my electrodermal testing 1.5 years ago, it was Babesia Canis.

Which is a strain that usually affects dogs. According to Dr. Schaller, it can also affect humans.

Here is a link: http://www.babesiabook.com/articles/babesia2007update.html


Well, I'm really excited to see what my new LLMD says, even more so now that I have an alternative MD to help with all of this!

Monday, March 9, 2009

Well, I am relieved that I will be seeing my new LLMD in just 3 days. I am finalizing my notes/questions for him so I will be 'ready'. I am seeing my alternative MD in Ohio tomorrow. He is the first doctor to tell me I had Lyme and Babesia.

I was really tired today, may have partly been due to the time change. We got our oldest child's blood drawn today for Igenex for Lyme. It will take anywhere from 2-4 weeks to get the results. I'm nervous.

I am feeling some air hunger again, it has been 3 weeks almost since it last happened. I hope it doesn't get as awful feeling as it did last time.

Well, it's late and I need to get myself to bed!

Tuesday, March 3, 2009

Well, this will be short because it's getting late and I have kids to get ready for bed. I've started to have difficulty swallowing again. This evening I nearly choked on dinner. It's so frustrating. This was one of my first major symptoms which started I believe in Dec 1996. It went away after about a year, but came back in November 2003, and did not go away until 2006 some time.

It's been intermittent since. It is so frustrating to fear eating. It feels like my throat becomes paralyzed and it just won't work.

I am very curious to see what my new LLMD thinks about this symptom.

I also have been having some more heart palps again. Ugh!!

Well, I need to get the kiddos ready for bed!

Sunday, March 1, 2009

Well, it's been a rollar coaster ride the past few days. Just when you think certain symptoms are gone...they're Baaacckkk!

I awoke on Thursday morning with that awful feeling of anxiety, the pit in my stomach. No idea why. I thought about it later and I realized we were upon the end of the month. Much of last year, I was having flare ups of possible Bartonella, my anxiety would surge and I would have very sore legs and feet. It felt like someone either beat me with a baseball bat, or I had just exercised for hours the day before, when in fact neither instance had occurred.

Friday morning I awoke with leg pain. Mostly in the quads. A little in the calves. It was odd because usually my feet hurt too. That came on Saturday.

Swallowing trouble is beginning again. Today my legs feel pretty great, but my swallowing is very difficult. This is one of the scary symptoms that I really hate.

Why did all of this reocurr? I really don't know. I did drink quite a bit of grapefruit juice the past few days, which may have the crushed grapefruit seed in it..a potent antifungal/antibacterial substance.

I just cannot wait for my appointment next week (yes, it is NEXT WEEK!). I hope my anxiety is down then, there is nothing worse than feeling like you are dying and driving in a car in the middle of nowhere.

Plus I want to be able to focus on what my new LLMD is saying, when my mind is going 100 miles/minute, it's a little difficult.

Well.... I need to get the children bathed and hopefully be in bed early tonight, Elijah had a 103 fever most of the day yesterday and he needs his rest!