I know many of you love the summer months, but for me, it is absolute hell with the lyme. I have come to actually dread July and August, and count down the days to the fall weather. It's just that it increases the symptoms, and lately, those lovely symptoms have been hand cramping (dropped a cup of tea the other day, as my hands couldn't grasp onto it), full body shaking, dizziness, sweats, and incredible fatigue. I just don't know at this point if I am ever going to get better. It's been a long time--try 5 years (2 more with the CFS), and I've tried so many treatments. I am on a drug holiday at the moment, as I need to regain my strength, but I feel like saying what strength? There isn't any. Sometimes I wonder if I should just cut my losses and just live with this, but at other times, I am pushed onward by some invisible force urging me to fight and never give up. I know that when I do fight, I am pretty sick, and there is a danger of me being hospitalized if it gets bad enough. I'd like to think I am strong enough to withstand that, but I'm not sure if I am. I just am sick of feeling guilty and apologizing to everyone who this illness affects--mostly everyone in my life. I didn't ask for this, and it's frustrating when it unlawfully intervenes in my life. Most people get it, and tell me not to worry and not apologize. I just feel like I need to, as their lives have been undoubtedly affected by this too. That's what I wish people would understand. It's not just the lyme patient that is affected. It's everyone in that patient's life who is affected. Sometimes I don't feel like pushing myself, yet I do anyway, to force some semblance of normality, and a life, whatever that is. I am strong most days, and look to the future with hope, but sometimes it's near impossible to do so. I cry, yes, and feel robbed of my life. I wonder how it would be if things were different and I had never gotten sick. Hard to imagine any other reality that the current one, but when I am by myself, my mind wanders. I don't want it defining my life, and I am sick to death of talking about it sometimes, but it's such a big part of my life right now. I know some people get sick of it or think I am being negative, but it helps me to talk about it and brainstorm different ideas for my eventual health. I'm supposed to see my lyme doctor next week and talk about different options. He/she is worried that it may be something else I am dealing with, in addition to the lyme. Geez, like there isn't enough going on in my body! I hope it isn't cancer. That is the thing. I always jump to the worst possible conclusion, and I do worry, as my immune system is basically non-existent, but it could be just the Babesia rearing its ugly head too. The summer months seem to bring on Babesia flares for me. I can't even go on long car rides, as it exacerbates my symptoms, much less drive a car. This is me just venting, but I AM SO SICK OF BEING SICK!!! It's gone on for far too long, and I'd like to be one of those success stories featured in the Lyme movie Under Our Skin. Why can't I get better, and when can it be my turn? Ok, there is my rant for the night. I'm going to try to get some sleep, although that has been a struggle lately as well. It doesn't help that zombie dog (aka Anna) is scratching like crazy and walking around in circles. Ugh..dumb dog. Anyway, hope that tomorrow is better in terms of symptoms. Hope everyone enjoys the rest of the weekend!
--Julie B.
Saturday, August 7, 2010
Thursday, July 22, 2010
Some of my Ramblings
Well, yesterday was actually a good day for me--at least compared to how I've been feeling the past few weeks. I woke up a little dizzy, but nothing compared to how I was. I was able to actually get ready for the day, and *gasp* wear real clothes, instead of pajamas! Woo hoo! I know, it sounds like a minuscule accomplishment, but for me, it was significant. I was able to walk Anna for a bit outside, so it was nice to actually be outdoors. It was kind of overcast and rainy, so I didn't risk sun exposure. I'm off the doxycycline for now anyway (doctor wanted me to take a break from it for awhile, until my symptoms improve, and then I'm on it again), so a little sun exposure won't hurt me, I don't think.
Today, the symptoms are back in full force--ugh. At least I experienced a small break from it yesterday. I'm just really dizzy and super tired--more so than usual. I was up a bit last night, just shaking. When that happens, I try to do something that distracts me. Last night, it was playing Cake Mania 3 on the DS. I love that game, but I've already finished it, so I just play the mini games. When that fails, I watch tv in my room. If that doesn't work, I try reading or doing a crossword puzzle. If THAT fails, well, Benadryl is my last resort. I don't really like taking that, as it knocks me out for a long time, but it does help the shaking. I wish I had more games for the DS, but they're a little more expensive than Wii games. I would love to play the New York Times Crosswords for the DS game. I haven't seen it anywhere in stores, but I do see it online on Gamestop.com, so I'll have to add that to my Christmas list (kind of far away, but that's ok). I haven't really played the Wii in awhile. Usually, Garrett and I have our Wii night, where each of us compete against each other in different games, but with his pinched nerve, he hasn't really felt up to playing, and it's no fun playing without him, so we've both been taking a break from it. We did get the Mario Galaxy 3 game, which is really fun. I'm not good at it, but I enjoy playing! I didn't have a Nintendo system growing up, so all of the Mario stuff is new to me. I remember wanting one when I was little, but it wasn't "educational"--at least that is what my parents said. Yup, I am the daughter of two teachers! LOL Instead, I played a lot of computer games: Oregon Trail, Where in the World is Carmen San Diego?, Number Munchers, Word Munchers, etc. I liked them though, especially the Where in the World is Carmen San Diego? game.
I watched General Hospital again today--one of my favorite shows! I just wish they wouldn't destroy certain relationships they've built up for awhile. That is my only criticism. I loved Jason and Liz together, for example, and now he is back with the boring and annoying Sam. I just never liked them together. I loved Emily and Nikolas together, but she had to get killed by this crazy serial killer a long time ago, so that relationship was destroyed. Also too, Maxie and Spinelli. Now, they're not together anymore. I wish the writers/director would pay attention to what the fans wanted, because I doubt they'd want some of their favorite couples to be split apart so often. I could go on and on, but I think you get the point. I do enjoy the show though. I remember watching it as a little kid, even though I wasn't supposed to, and grew up watching Robin (she was my same age at the time, or around it), and was happy to see she was back again. I just wish her husband wouldn't have cheated on her with Lisa, one of the doctors on staff. What are you doing, writers and directors? Geez.
Ok, well, I think I am going to rest for awhile. This blog really isn't about anything--just kind of my ramblings, but I suppose that is ok. It doesn't always have to have a larger theme. It just helps writing down my thoughts, I think. I hope all of you are enjoying the day, and staying cool! :-)
--Julie B.
Today, the symptoms are back in full force--ugh. At least I experienced a small break from it yesterday. I'm just really dizzy and super tired--more so than usual. I was up a bit last night, just shaking. When that happens, I try to do something that distracts me. Last night, it was playing Cake Mania 3 on the DS. I love that game, but I've already finished it, so I just play the mini games. When that fails, I watch tv in my room. If that doesn't work, I try reading or doing a crossword puzzle. If THAT fails, well, Benadryl is my last resort. I don't really like taking that, as it knocks me out for a long time, but it does help the shaking. I wish I had more games for the DS, but they're a little more expensive than Wii games. I would love to play the New York Times Crosswords for the DS game. I haven't seen it anywhere in stores, but I do see it online on Gamestop.com, so I'll have to add that to my Christmas list (kind of far away, but that's ok). I haven't really played the Wii in awhile. Usually, Garrett and I have our Wii night, where each of us compete against each other in different games, but with his pinched nerve, he hasn't really felt up to playing, and it's no fun playing without him, so we've both been taking a break from it. We did get the Mario Galaxy 3 game, which is really fun. I'm not good at it, but I enjoy playing! I didn't have a Nintendo system growing up, so all of the Mario stuff is new to me. I remember wanting one when I was little, but it wasn't "educational"--at least that is what my parents said. Yup, I am the daughter of two teachers! LOL Instead, I played a lot of computer games: Oregon Trail, Where in the World is Carmen San Diego?, Number Munchers, Word Munchers, etc. I liked them though, especially the Where in the World is Carmen San Diego? game.
I watched General Hospital again today--one of my favorite shows! I just wish they wouldn't destroy certain relationships they've built up for awhile. That is my only criticism. I loved Jason and Liz together, for example, and now he is back with the boring and annoying Sam. I just never liked them together. I loved Emily and Nikolas together, but she had to get killed by this crazy serial killer a long time ago, so that relationship was destroyed. Also too, Maxie and Spinelli. Now, they're not together anymore. I wish the writers/director would pay attention to what the fans wanted, because I doubt they'd want some of their favorite couples to be split apart so often. I could go on and on, but I think you get the point. I do enjoy the show though. I remember watching it as a little kid, even though I wasn't supposed to, and grew up watching Robin (she was my same age at the time, or around it), and was happy to see she was back again. I just wish her husband wouldn't have cheated on her with Lisa, one of the doctors on staff. What are you doing, writers and directors? Geez.
Ok, well, I think I am going to rest for awhile. This blog really isn't about anything--just kind of my ramblings, but I suppose that is ok. It doesn't always have to have a larger theme. It just helps writing down my thoughts, I think. I hope all of you are enjoying the day, and staying cool! :-)
--Julie B.
Friday, July 16, 2010
Morning Situation
Well, it has been a somewhat eventful morning! Garrett woke me up to tell me that he had found a tick on the desk, engorged. He had gone outside for a cigarette, and was beginning to work on something for his job at the computer, when he felt something crawling in his hair. He shook his head a bit and lo and behold, a tick fell onto the desk. I saw it, and yes, the little jerkface was there, in all of its disgusting glory. We managed to place it in a Zip-Loc bag with a cotton ball. Thankfully, there are no bull's-eye marks on Garrett, and he wouldn't have been able to just shake the tick off if it was burrowed into his skin, so that is a good sign. Still, I urged him to go to the ER right away, to get tested. You really can't be too careful with this. He is there now, and he brought the tick with him. I'm thinking the tick maybe bit another animal--hopefully not Anna, and it just fell onto Garrett after. I wanted to go with him to the ER, but he said that is fine (still in my pajamas, and a little dizzy and groggy). It just goes to show you that these parasites are truly everywhere. Sometimes I am even afraid to go outside, and I won't walk Anna on the grass. I kind of keep to the sidewalks. I was telling Garrett that as much as I love dogs (golden retrievers particularly), we are getting a cat after Anna passes. There are just too many risks associated with having a dog. I know, it sounds crazy and a little neurotic to people who haven't been through this, but you have to take every precaution necessary. After I have had this for so many years, I will be damned if anyone else in my family gets this. I was half tempted to squash the tick myself. Just seeing it made me so angry. However, we both want to have it tested for disease. I'm thinking maybe it had attached itself to a bird or a dog around here, and again, hopefully that dog wasn't Anna. It's never a dull moment, that's for sure!
The Lyme doctor called me last night, and wanted me to take a break from the doxycycline for now, as I am having some worrisome symptoms, and he/she wants to see if they continue while I am off the medication. I told him/her that I had some of them before the medication, but he/she wants me to call him/her this afternoon anyway, just to check in, and if I get worse, he/she wants me to come in on Monday. He/she wants me to eat lots of fruit and yogurt, so it's a good thing Garrett got a container of Greek yogurt as well as raspberries and strawberries (love summer fruit!)
Ok, now getting a text from Garrett saying that it wasn't a tick but a beetle. Hmm..yeah..I'm still not sold on that one. It looked just like a tick to both of us, especially compared to the pictures we've seen online, and from what I know. Well, I am just glad he is alright anyway. Now on three..1...2...3....huge sigh of relief!! :-)
The Lyme doctor called me last night, and wanted me to take a break from the doxycycline for now, as I am having some worrisome symptoms, and he/she wants to see if they continue while I am off the medication. I told him/her that I had some of them before the medication, but he/she wants me to call him/her this afternoon anyway, just to check in, and if I get worse, he/she wants me to come in on Monday. He/she wants me to eat lots of fruit and yogurt, so it's a good thing Garrett got a container of Greek yogurt as well as raspberries and strawberries (love summer fruit!)
Ok, now getting a text from Garrett saying that it wasn't a tick but a beetle. Hmm..yeah..I'm still not sold on that one. It looked just like a tick to both of us, especially compared to the pictures we've seen online, and from what I know. Well, I am just glad he is alright anyway. Now on three..1...2...3....huge sigh of relief!! :-)
Thursday, July 15, 2010
Thursday Thoughts
I haven't updated this blog in a little while, so I decided that it was time to get with it here, and write something! :-)
My mom posted something on her facebook about macrobiotics and the Ultimate Zapper, associated with Dr. Hulda Clark. I guess this is kind of like the Rife Machine for Lyme Disease. What it does is send tiny electric pulses (non-painful) into the system, and the frequency is supposed to zap the spirochetes. I've never tried anything like that before. Most of my treatment has centered around oral antibiotics and IV therapy, so this seems kind of interesting. It isn't as expensive as I thought it would be. The Rife Machines are kind of cost prohibitive, and I've never been able to afford one, but the Ultimate Zapper is around $200-$300, so that is at least financially feasible. I've spent around that for the Igenex testing, so I could do this. Of course, we need to pay off the credit card first, but maybe after that. It sounds promising anyway. I've tried the macrobiotic diet in the past, and had had some success with it. It was a little bland and you need to spend a lot of the time cooking, but once you get used to it, it's good. I felt a little better while doing it, but I just wish it wasn't so expensive! I've heard Gwyneth Paltrow was a devotee (maybe still is now?) of the diet, and it seems to have helped her, so maybe it's worth a try again. I ate a lot of sea vegetables though--kelp, dulse seaweed, and a lot of brown rice! There is a book I have around here which talks about it--something Hippy Chick's Guide to Macrobiotics, I think, or something of that sort. It was cute. The author kind of explained it in a non-threatening way, and the recipes were yummy. I may revisit the idea soon, if I can find the book somewhere in my ultra-cluttered room!
It has been kind of a sloooowww week so far. I've been sleeping whole days away..just no energy whatsoever, and Garrett is down for the count as well, as he has a pinched nerve, so we're both kind of lounging around here. He is at physical therapy now, so hopefully that helps him to some degree. I just feel so bad when he is in such pain. The doctor thinks that it will go away within a couple of weeks, so hopefully that is the case. He's been taking vicodin and skelaxin, and he still feels the pain in his arm, but without those meds, it would be a lot worse. I just hope he isn't pushed too much today at his therapy session. The activity needs to be slowly ramped up, not too much too soon. He definitely needs a massage. I think that would help him a lot. I remember taking vicodin once when I had mono in the past, and I was allergic to it, but I know it does help a lot of people.
Due to not posting for awhile, there have been quite a few things that have happened in the past several days. Unfortunately, one of our family cats, Whiskers, has passed away. My mom let me know that she just wasn't eating anymore, and her kidneys were shutting down. It's just so sad. She was only 12, and I can remember the day when my mom and I went to get her. She was such a skittish little thing, and was meowing the whole way home, but I carried her on my lap and was talking to her, trying to calm her down. Eventually, she started to grow attached to me, and would be there for me when I was going through tough times with various Lyme treatments. She was so sweet and grew to love people--well, just the people she knew, like myself, my parents and sister. She loved Aidan too, my nephew. I think she kind of viewed him as her kitten, because she was protective over him. I just pray that she is resting in peace, and is up there playing with the other animals in our family who have passed on--Travis, Simmy, Mittens and Midnight. Of course, I don't think Travis would like to see her, but maybe in animal heaven all animals get along? Travis was our pembroke welsh corgi. Whiskers used to claw and hiss at him whenever she saw him--just didn't like dogs. Anyway, I just thought I'd mention Whiskers in all of this. Now, it is just Tigger, my sister's cat.
Hope all of you are enjoying the tail-end of the week. :-)
--Julie B.
My mom posted something on her facebook about macrobiotics and the Ultimate Zapper, associated with Dr. Hulda Clark. I guess this is kind of like the Rife Machine for Lyme Disease. What it does is send tiny electric pulses (non-painful) into the system, and the frequency is supposed to zap the spirochetes. I've never tried anything like that before. Most of my treatment has centered around oral antibiotics and IV therapy, so this seems kind of interesting. It isn't as expensive as I thought it would be. The Rife Machines are kind of cost prohibitive, and I've never been able to afford one, but the Ultimate Zapper is around $200-$300, so that is at least financially feasible. I've spent around that for the Igenex testing, so I could do this. Of course, we need to pay off the credit card first, but maybe after that. It sounds promising anyway. I've tried the macrobiotic diet in the past, and had had some success with it. It was a little bland and you need to spend a lot of the time cooking, but once you get used to it, it's good. I felt a little better while doing it, but I just wish it wasn't so expensive! I've heard Gwyneth Paltrow was a devotee (maybe still is now?) of the diet, and it seems to have helped her, so maybe it's worth a try again. I ate a lot of sea vegetables though--kelp, dulse seaweed, and a lot of brown rice! There is a book I have around here which talks about it--something Hippy Chick's Guide to Macrobiotics, I think, or something of that sort. It was cute. The author kind of explained it in a non-threatening way, and the recipes were yummy. I may revisit the idea soon, if I can find the book somewhere in my ultra-cluttered room!
It has been kind of a sloooowww week so far. I've been sleeping whole days away..just no energy whatsoever, and Garrett is down for the count as well, as he has a pinched nerve, so we're both kind of lounging around here. He is at physical therapy now, so hopefully that helps him to some degree. I just feel so bad when he is in such pain. The doctor thinks that it will go away within a couple of weeks, so hopefully that is the case. He's been taking vicodin and skelaxin, and he still feels the pain in his arm, but without those meds, it would be a lot worse. I just hope he isn't pushed too much today at his therapy session. The activity needs to be slowly ramped up, not too much too soon. He definitely needs a massage. I think that would help him a lot. I remember taking vicodin once when I had mono in the past, and I was allergic to it, but I know it does help a lot of people.
Due to not posting for awhile, there have been quite a few things that have happened in the past several days. Unfortunately, one of our family cats, Whiskers, has passed away. My mom let me know that she just wasn't eating anymore, and her kidneys were shutting down. It's just so sad. She was only 12, and I can remember the day when my mom and I went to get her. She was such a skittish little thing, and was meowing the whole way home, but I carried her on my lap and was talking to her, trying to calm her down. Eventually, she started to grow attached to me, and would be there for me when I was going through tough times with various Lyme treatments. She was so sweet and grew to love people--well, just the people she knew, like myself, my parents and sister. She loved Aidan too, my nephew. I think she kind of viewed him as her kitten, because she was protective over him. I just pray that she is resting in peace, and is up there playing with the other animals in our family who have passed on--Travis, Simmy, Mittens and Midnight. Of course, I don't think Travis would like to see her, but maybe in animal heaven all animals get along? Travis was our pembroke welsh corgi. Whiskers used to claw and hiss at him whenever she saw him--just didn't like dogs. Anyway, I just thought I'd mention Whiskers in all of this. Now, it is just Tigger, my sister's cat.
Hope all of you are enjoying the tail-end of the week. :-)
--Julie B.
Friday, July 9, 2010
Update on Medication
Well, it happened again this morning--the "spins" along with getting sick. I called my doctor today and asked about it. I didn't want to keep taking the doxycycline if all that happens is me passing it back up. I was told to take the medication later on in the day with food, which is actually contraindicated on the bottle. Supposedly that rule is only for non-Lyme patients, who aren't taking the medication long term. Also, I can take it later on in the day, which eliminates the morning issues. He/She said to try this, and if I am still getting sick, he/she wants to switch the doxycycline to Bactrim (another tough drug). Soo..we will see what happens with that. The doctor was at a Lyme conference out of town, and I have to say, he/she (can't even refer to the gender of the doctor) really stays up on the latest research. He/she has even met with two of my previous Lyme doctors, so he/she knows his/her stuff! I know that I have a great doctor on my case, which helps a great deal, and he/she got back to me right away, which impressed me a lot.
I haven't really had much of an appetite today, but I did manage to eat some leftovers from last night. Garrett made a delicious thai peanut noodle dish--one of my favorites! I think I will always like eating that, of course. I'm trying to drink more water, but it's kind of a pain when I'm racing to the bathroom every five minutes. At least it is somewhat cooler out today, so that is some what of a relief. I can't really go outside in the sun anyway, as the doxycycline and the sun are not a good mix. Doxycycline+sun=horrible skin burns, and with my pale as vampire skin, I don't think that would tickle. I've been sleeping a lot anyway.
I'd love to have a cat who could cuddle with me. We have a dog, a cocker spaniel named Anna, but she is so smelly and I don't think that is conducive to snuggling. Plus, she kind of hates me. She always glares at me with her droopy clown-wearing-mascara eyes, and is jealous when Garrett hugs me, so I think she'd bite me if I went near her. She scratches all the time too. I miss Tigger, the cat my sister had when I was living with my parents. She was a cutie. Maybe in time I could get a cat--think it would really help.
Ok, going to cut this short. I am trying to write a poem (haven't written one in quite some time, so it's been like pulling teeth trying to get the right words out), so we'll see how it turns out. If it sounds decent, I'll post it here some time. I hope all of you enjoy your weekends! Take care for now. :-)
--Julie B.
I haven't really had much of an appetite today, but I did manage to eat some leftovers from last night. Garrett made a delicious thai peanut noodle dish--one of my favorites! I think I will always like eating that, of course. I'm trying to drink more water, but it's kind of a pain when I'm racing to the bathroom every five minutes. At least it is somewhat cooler out today, so that is some what of a relief. I can't really go outside in the sun anyway, as the doxycycline and the sun are not a good mix. Doxycycline+sun=horrible skin burns, and with my pale as vampire skin, I don't think that would tickle. I've been sleeping a lot anyway.
I'd love to have a cat who could cuddle with me. We have a dog, a cocker spaniel named Anna, but she is so smelly and I don't think that is conducive to snuggling. Plus, she kind of hates me. She always glares at me with her droopy clown-wearing-mascara eyes, and is jealous when Garrett hugs me, so I think she'd bite me if I went near her. She scratches all the time too. I miss Tigger, the cat my sister had when I was living with my parents. She was a cutie. Maybe in time I could get a cat--think it would really help.
Ok, going to cut this short. I am trying to write a poem (haven't written one in quite some time, so it's been like pulling teeth trying to get the right words out), so we'll see how it turns out. If it sounds decent, I'll post it here some time. I hope all of you enjoy your weekends! Take care for now. :-)
--Julie B.
Thursday, July 8, 2010
Life of a Lymie
Hello, and welcome to my blog! If you are here, you probably have some idea of what this blog is going to focus on. The title sort of gives it away, I suppose. Yes, it is about my seven year struggle with Lyme Disease, Babesia and Bartonella. I thought it was important to document my thoughts here, whether or not anyone reads it or is interested. If I can help at least one person, then I will be happy. :-) That is where it starts, after all.
I am currently on a pretty aggressive regimen. Igenex testing (for more information on Igenex labs or Lyme Disease itself, go to Igenex.com and ILADS.org) revealed that I tested positive for ACTIVE Lyme, and it is inconclusive as to whether or not it is chronic, but band 31 was indeterminate, which usually does mean positive..so yes, chronic and active Lyme..what fun is that? I tested positive for 5-6 of the bands on Igenex, which is a pretty raging infection. Stupid ticks. I thought that by now, after all this time, it would be more so chronic, but the Lyme doctor explained to me that sometimes one spirochete can survive and just constantly replicate, creating more spirochetes. No wonder I've been so sick. The doctor (can't reveal the name, as Lyme doctors are constantly being targeted by the CDC and Infectious Disease Society of America--political battle that just doesn't seem to end) put me on a doxycycline and artemisia regimen, along with a powerful probiotic. It is day 8 of the treatment, and I'm not sure of how else to say it--I feel terrible. However, that is actually a GOOD thing..means that the spirochetes are being killed, or at least I hope so. I became sick this morning and just was super dizzy and nauseous. It is doing a number on me, that is for sure! I am trying to be positive though--have to look ahead to the future. My husband and I have been married nearly 6 months now, and we would both love to go on a honeymoon to Las Vegas when I get better, and eventually have children, of course. It goes without saying that I would love to be out there working as well, but people who know me know that. I'm a pretty type-a person who likes to "do do do" and not "sleep sleep sleep," but all in good time. Yes, I do have a great deal of motivation for getting better. I am going to be 30 in February, and would like to have my 30's be a time of great health, laughter, and just overall good things. I can't get back the 7 years I have lost already, but at least I can anticipate the future with a smile.
I was bitten by a tick in 2006, but I went into it sick already (Chronic Fatigue Syndrome, due to never getting over mono in college). I had no idea I was bitten, as I think it entered into a nasty cut on my foot. Easy access. I was diagnosed with a coinfection in the ER--Ehrlichiosis. I was treated successfully, but the testing was just so inaccurate. It failed to pick up the fact that I also had Lyme Disease itself, Bartonella, and Babesia. I just wasn't feeling any better after a year, so I went to a Lyme-Literate doctor in CT., who diagnosed me with Lyme, Babesia and Bartonella via the Igenex testing, which is pretty much the gold standard of testing when it comes to Lyme and tick-borne diseases. I had a PICC line in my arm for seven weeks, receiving daily infusions of Azithromycin. It wasn't fun, or easy, but was necessary. My mom had to wrap my arm up in Saran-Wrap every time I took a shower, as I wasn't supposed to get the line wet. I looked like a mummy! I became great at washing my hair with one hand, as I held the other out of the water. Pretty soon, I had developed quite a muscle in my right arm!
Flash forward to now, I have not been on treatment for quite a while, so this new protocol is long overdue. My husband has been urging me to write in my journal now for quite some time, so I thought I should definitely try it out. He has been very loving and supportive throughout all of this, although I know it isn't easy to see someone you love go through so much pain and frustration. I am definitely a very lucky woman, and he is helping me to fight this day in and day out.
Ok, so my first post was quite long, but it just sort of gives background information as to what I've been going through and am going through currently. Thanks for reading! :-)
--Julie B.
I am currently on a pretty aggressive regimen. Igenex testing (for more information on Igenex labs or Lyme Disease itself, go to Igenex.com and ILADS.org) revealed that I tested positive for ACTIVE Lyme, and it is inconclusive as to whether or not it is chronic, but band 31 was indeterminate, which usually does mean positive..so yes, chronic and active Lyme..what fun is that? I tested positive for 5-6 of the bands on Igenex, which is a pretty raging infection. Stupid ticks. I thought that by now, after all this time, it would be more so chronic, but the Lyme doctor explained to me that sometimes one spirochete can survive and just constantly replicate, creating more spirochetes. No wonder I've been so sick. The doctor (can't reveal the name, as Lyme doctors are constantly being targeted by the CDC and Infectious Disease Society of America--political battle that just doesn't seem to end) put me on a doxycycline and artemisia regimen, along with a powerful probiotic. It is day 8 of the treatment, and I'm not sure of how else to say it--I feel terrible. However, that is actually a GOOD thing..means that the spirochetes are being killed, or at least I hope so. I became sick this morning and just was super dizzy and nauseous. It is doing a number on me, that is for sure! I am trying to be positive though--have to look ahead to the future. My husband and I have been married nearly 6 months now, and we would both love to go on a honeymoon to Las Vegas when I get better, and eventually have children, of course. It goes without saying that I would love to be out there working as well, but people who know me know that. I'm a pretty type-a person who likes to "do do do" and not "sleep sleep sleep," but all in good time. Yes, I do have a great deal of motivation for getting better. I am going to be 30 in February, and would like to have my 30's be a time of great health, laughter, and just overall good things. I can't get back the 7 years I have lost already, but at least I can anticipate the future with a smile.
I was bitten by a tick in 2006, but I went into it sick already (Chronic Fatigue Syndrome, due to never getting over mono in college). I had no idea I was bitten, as I think it entered into a nasty cut on my foot. Easy access. I was diagnosed with a coinfection in the ER--Ehrlichiosis. I was treated successfully, but the testing was just so inaccurate. It failed to pick up the fact that I also had Lyme Disease itself, Bartonella, and Babesia. I just wasn't feeling any better after a year, so I went to a Lyme-Literate doctor in CT., who diagnosed me with Lyme, Babesia and Bartonella via the Igenex testing, which is pretty much the gold standard of testing when it comes to Lyme and tick-borne diseases. I had a PICC line in my arm for seven weeks, receiving daily infusions of Azithromycin. It wasn't fun, or easy, but was necessary. My mom had to wrap my arm up in Saran-Wrap every time I took a shower, as I wasn't supposed to get the line wet. I looked like a mummy! I became great at washing my hair with one hand, as I held the other out of the water. Pretty soon, I had developed quite a muscle in my right arm!
Flash forward to now, I have not been on treatment for quite a while, so this new protocol is long overdue. My husband has been urging me to write in my journal now for quite some time, so I thought I should definitely try it out. He has been very loving and supportive throughout all of this, although I know it isn't easy to see someone you love go through so much pain and frustration. I am definitely a very lucky woman, and he is helping me to fight this day in and day out.
Ok, so my first post was quite long, but it just sort of gives background information as to what I've been going through and am going through currently. Thanks for reading! :-)
--Julie B.
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