Wed, April 29th
Woke with extra waves again, sore feet, headache...tired but was up from 4-5ish...
mid day feeling lousy..tired, very wavy/tipsy, twitchy, face burning, recall problems, overall blah
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Monday, April 27, 2009
Sunday, April 26, 2009
April 26th, 2009
Lyme disease. Ugh. I can't even stand seeing the term in text. Here I am, 10 years later, still dealing with it. I decided to use this blog spot as a way to journal my day to day experiences while on IV Rocephin. Since I can never seem to keep track of notes I've written down on loose paper or remember where I placed my endless stack of bound journals, I figured sitting at a large, stable piece of machinery would be the only way to go. I have yet to misplace my PC. this is for my own personal journaling but in case anyone stumbles on this site I will provide some background.
ME: I'm a 37 yr old mom of two beautiful little girls. I stay at home trying to raise my girls the best I can while dealing with this ridiculous illness. I have an amazing husband who married me "sick" so to him, life has always been this way. I want him to know the pre-lyme me. That girl is much more fun:) Maybe some day.
History: Diagnosed with Lyme in 2000 after being sick for almost 2 years. Went on orals, saw some improvement but not tremendous. Was advised to stop all abx and go on homeopathic treatment by neuro(good times.) So was w/out any treatment until 2002. Found top lyme doc, tested positive for lyme, erlichia and babesia- went back on orals, got very sick. Attempted IV's end of Dec 2002 by Jan 1 2003(1 week later) became septic w/ 6 inch blood clot in arm. Stopped Iv's, hospitalized for 9 days, lucky to be alive. We did IV's at home w/out ins coverage and no formal training. DO NOT MAKE THIS MISTAKE! We had no clue what we were doing and consequently suffered tremendously. Several months later with leftover Rocephin, tried a midline by home nurse(we paid for out of pocket), she punctured my vein. Gave up entirely for months. Went to a temporary IV in wrist that would had put in on a Monday,took out ourselves on Thursday(this was a great system because I could get wet 3 days a week!). Used up 6 weeks of Rocephin, according to my notes I had some success but I don't really remember?? I couldn't get any more Rocephin, ins co denials were relentless, especially because doc wasn't a "specialist." Got married in Aug 2003, pregnant on honeymoon. Not the best "oops" since it interrupted treatment but how could one regret producing the love of your life? Throughout pregnancy I was on Bicillin injections. Had a pretty decent pregnancy-baby girl born 5/2004, totally "Igenix" healthy!- and stayed above my "crappy normal" for almost a year after. Originally thought it was pregnancy hormones but since my second pregnancy didn't afford me the same relief, I attribute it to the Bicillin(did not take as much in 2nd pregnancy). Fast forward to 2005. Symptoms started coming back like mad in summer of 2005. Never did anything consistent (drug wise) for a while. Doc closed practice in 2006 so I found a new doc who was an ID specialist. Feb of 2007 began Rocephin the RIGHT way for the first time. Had ins approval, home nurse, etc. I chose a hickman catheter because the picc caused me trouble and because I had a 2 yr old that I just couldn't put down. That said, I didn't want any arm restrictions and I was steeped in fear over my past experience with a picc. By week 8, I started feeling remarkable. By week 10 I had to STOP treatment and get my gallbladder out! ARGH!!! Before starting on Rocephin, I spoke of going on Actigall to my doc but she felt it wasn't necessary(I was told by previous doc that it was REQUIRED). Anyhoo...I got much worse after stopping treatment for a while. About 3 mos post surgery, I got pregnant again:) Current doc didn't feel abx while pregnant was necessary but I pushed on this one. Took Bicillin injections again, however not nearly as much as in first pregnancy. This pregnancy was horrible. I had a lot of problems and didn't feel nearly as well as I did the first time. However on 5/2/08 baby girl number 2 was born, also HEALTHY w/ clear Igenix lyme tests. Less then 4 mos later, symptoms worsened again. Been hanging on trying different neuropathy meds, none worked for long. That said, here I sit- April 26th, going at it again. I just want to feel GOOD. Can anyone blame me? Here we go.....
The hickman line was placed in my chest on Friday, April 24th. Ouch! It's still very sore but seems to be healing just fine(this is my second line in, the first was 2 yrs ago).
Protocol- LOTS of probiotics, Ursidol for sludging(even though I lost my gallbladder 2 yrs ago when going on Rocephin), a daily baby aspirin and benadryl, 25mg's. I hope to avoid sugar as much as possible.
Symptoms: wavy sensation in my brain, always rocking; fatigue, burning skin, intense foot pain(which subsided days before starting Iv's, OF COURSE!), stinging prickly sensations, cognitive issues, random stabbing pains, random backaches, overall "blah" feeling, twitching.
Sat, April 25th
1st infusion w/ "Joy"
Terrifying, terrifying, terrifying. I was soaked in fear of an allergic reaction but made it through the first day. I have to take a benadryl 30 minutes prior due to history of itching while infusing.
I immediately got a headache. I think that happened the last time I was on IV's but I can't be sure? I do remember getting the occasional migraine so it won't be a complete shock if that happens again.
Sun, April 26th
Right arm/right foot are feeling a bit numb? Feeling sluggish, very wavy/head pressure in back, tired. Headache.
ME: I'm a 37 yr old mom of two beautiful little girls. I stay at home trying to raise my girls the best I can while dealing with this ridiculous illness. I have an amazing husband who married me "sick" so to him, life has always been this way. I want him to know the pre-lyme me. That girl is much more fun:) Maybe some day.
History: Diagnosed with Lyme in 2000 after being sick for almost 2 years. Went on orals, saw some improvement but not tremendous. Was advised to stop all abx and go on homeopathic treatment by neuro(good times.) So was w/out any treatment until 2002. Found top lyme doc, tested positive for lyme, erlichia and babesia- went back on orals, got very sick. Attempted IV's end of Dec 2002 by Jan 1 2003(1 week later) became septic w/ 6 inch blood clot in arm. Stopped Iv's, hospitalized for 9 days, lucky to be alive. We did IV's at home w/out ins coverage and no formal training. DO NOT MAKE THIS MISTAKE! We had no clue what we were doing and consequently suffered tremendously. Several months later with leftover Rocephin, tried a midline by home nurse(we paid for out of pocket), she punctured my vein. Gave up entirely for months. Went to a temporary IV in wrist that would had put in on a Monday,took out ourselves on Thursday(this was a great system because I could get wet 3 days a week!). Used up 6 weeks of Rocephin, according to my notes I had some success but I don't really remember?? I couldn't get any more Rocephin, ins co denials were relentless, especially because doc wasn't a "specialist." Got married in Aug 2003, pregnant on honeymoon. Not the best "oops" since it interrupted treatment but how could one regret producing the love of your life? Throughout pregnancy I was on Bicillin injections. Had a pretty decent pregnancy-baby girl born 5/2004, totally "Igenix" healthy!- and stayed above my "crappy normal" for almost a year after. Originally thought it was pregnancy hormones but since my second pregnancy didn't afford me the same relief, I attribute it to the Bicillin(did not take as much in 2nd pregnancy). Fast forward to 2005. Symptoms started coming back like mad in summer of 2005. Never did anything consistent (drug wise) for a while. Doc closed practice in 2006 so I found a new doc who was an ID specialist. Feb of 2007 began Rocephin the RIGHT way for the first time. Had ins approval, home nurse, etc. I chose a hickman catheter because the picc caused me trouble and because I had a 2 yr old that I just couldn't put down. That said, I didn't want any arm restrictions and I was steeped in fear over my past experience with a picc. By week 8, I started feeling remarkable. By week 10 I had to STOP treatment and get my gallbladder out! ARGH!!! Before starting on Rocephin, I spoke of going on Actigall to my doc but she felt it wasn't necessary(I was told by previous doc that it was REQUIRED). Anyhoo...I got much worse after stopping treatment for a while. About 3 mos post surgery, I got pregnant again:) Current doc didn't feel abx while pregnant was necessary but I pushed on this one. Took Bicillin injections again, however not nearly as much as in first pregnancy. This pregnancy was horrible. I had a lot of problems and didn't feel nearly as well as I did the first time. However on 5/2/08 baby girl number 2 was born, also HEALTHY w/ clear Igenix lyme tests. Less then 4 mos later, symptoms worsened again. Been hanging on trying different neuropathy meds, none worked for long. That said, here I sit- April 26th, going at it again. I just want to feel GOOD. Can anyone blame me? Here we go.....
The hickman line was placed in my chest on Friday, April 24th. Ouch! It's still very sore but seems to be healing just fine(this is my second line in, the first was 2 yrs ago).
Protocol- LOTS of probiotics, Ursidol for sludging(even though I lost my gallbladder 2 yrs ago when going on Rocephin), a daily baby aspirin and benadryl, 25mg's. I hope to avoid sugar as much as possible.
Symptoms: wavy sensation in my brain, always rocking; fatigue, burning skin, intense foot pain(which subsided days before starting Iv's, OF COURSE!), stinging prickly sensations, cognitive issues, random stabbing pains, random backaches, overall "blah" feeling, twitching.
Sat, April 25th
1st infusion w/ "Joy"
Terrifying, terrifying, terrifying. I was soaked in fear of an allergic reaction but made it through the first day. I have to take a benadryl 30 minutes prior due to history of itching while infusing.
I immediately got a headache. I think that happened the last time I was on IV's but I can't be sure? I do remember getting the occasional migraine so it won't be a complete shock if that happens again.
Sun, April 26th
Right arm/right foot are feeling a bit numb? Feeling sluggish, very wavy/head pressure in back, tired. Headache.
Subscribe to:
Posts (Atom)