July 25th- off treatment for 2 days.
This past week has been crummy- even while still on meds. A lot of brain pressure, twitching, off balabce, random pains, tingling breaking through foot pain, etc. Started on Monday- the week AFTER my period again, there is a pattern that the week after my period seems to be when i feel my wrost- I guess that would be every 4 weeks or so??
Sunday, July 26, 2009
Sunday, June 28, 2009
Friday, June 26, 2009
June 26, day 63*********************
Last night I had some very intense vertigo/swirling along with some foot zapping/pain increase. Today I feel really run down/tired with tremendous swirling. I have a ton of brain fog and feel like im out of it. It's hard to type because my head is swirling too much. Twitching is up, backache(but could be from the new bed), my patience level is low-feel like a totally different person when feeling this "lymie" or whatever it is. All I want to do is sleep or put my head down to stop the swirling.
Last night I had some very intense vertigo/swirling along with some foot zapping/pain increase. Today I feel really run down/tired with tremendous swirling. I have a ton of brain fog and feel like im out of it. It's hard to type because my head is swirling too much. Twitching is up, backache(but could be from the new bed), my patience level is low-feel like a totally different person when feeling this "lymie" or whatever it is. All I want to do is sleep or put my head down to stop the swirling.
Thursday, June 25, 2009
June 25, day 62*******************************
feeling major dump in the energy dept. less clear brain for sure...foot stuff is breaking through more again(started 3 days ago) pain on the sides, itchy sides too..off balance is up..tingling sensations in spine-lower back and neck-burning spots in hands that come and go...still functioning but I can feel a MAJOR difference then last week..
feeling major dump in the energy dept. less clear brain for sure...foot stuff is breaking through more again(started 3 days ago) pain on the sides, itchy sides too..off balance is up..tingling sensations in spine-lower back and neck-burning spots in hands that come and go...still functioning but I can feel a MAJOR difference then last week..
Sunday, June 21, 2009
June 21st, Day 58- Father's Day *******not feeling well now that period has passed again?****
Felling "lymie" in the energy dept. Very tired can't seem to shake it. Off balance, wavy sensations been increased since getting my period but worse now that my period is over. Feet are under control, still there but under control from the severe stuff..
Felling "lymie" in the energy dept. Very tired can't seem to shake it. Off balance, wavy sensations been increased since getting my period but worse now that my period is over. Feet are under control, still there but under control from the severe stuff..
Sunday, June 14, 2009
Wednesday, June 10, 2009
Monday, June 8, 2009
June 8th, Day 45
Past 2 days foot issues have been better, not gone but better. changed meds to 600 at night and then 300 2X a day. Today, im feeling off balance again and stinging in my face, chin etc...my feet are burning and feel very sore...yesterday I felt far more tired then I hae been but later in the day my energy picked up..
some random aches in ankles, thighs, sore palms, sore fingers, sides of hands ache...but on a scale of 1-10 the pain is low...prob a 2..
Past 2 days foot issues have been better, not gone but better. changed meds to 600 at night and then 300 2X a day. Today, im feeling off balance again and stinging in my face, chin etc...my feet are burning and feel very sore...yesterday I felt far more tired then I hae been but later in the day my energy picked up..
some random aches in ankles, thighs, sore palms, sore fingers, sides of hands ache...but on a scale of 1-10 the pain is low...prob a 2..
Friday, June 5, 2009
Friday, June 5th day 42-
Still dealing with the feet problem. Took 2 300 mgs today and had ups and downs...now that it's night the pain is overwhelming again, just took a 600 mg-not seeing any relief
stabbing pains in my thigh off and on, sore plams, burning hands, backs of legs, face, chin...off balance once infusing..better after a while...
Foot problem is still the WORST issue by FAR. :(
Still dealing with the feet problem. Took 2 300 mgs today and had ups and downs...now that it's night the pain is overwhelming again, just took a 600 mg-not seeing any relief
stabbing pains in my thigh off and on, sore plams, burning hands, backs of legs, face, chin...off balance once infusing..better after a while...
Foot problem is still the WORST issue by FAR. :(
Thursday, June 4, 2009
Thursday, June 4th- Day 41
Foot stuff is still here. took more neurontin last night but since it's not helping a while lot, im getting off to see what happens. it is so depressing since I finally feel diminished symptoms everywhere else but can't really "feel" better because this is so painful. It's not just sore, it's burning, stabbing, sharp pains, etc. And it's around the clock. Getting some stabbing sensations in my hands too but only mild for now. Ocassionaly muscle aches but nothing to even think about , very mild. It's a sif all of my symptoms stopped so this one could take over.
Foot stuff is still here. took more neurontin last night but since it's not helping a while lot, im getting off to see what happens. it is so depressing since I finally feel diminished symptoms everywhere else but can't really "feel" better because this is so painful. It's not just sore, it's burning, stabbing, sharp pains, etc. And it's around the clock. Getting some stabbing sensations in my hands too but only mild for now. Ocassionaly muscle aches but nothing to even think about , very mild. It's a sif all of my symptoms stopped so this one could take over.
Sunday, May 31, 2009
May 31st, day 37
This is HELL. I can hardly take the pain in my feet. It has come back and broken through the meds AGAIN. :( It is unbearable and making me feel total despair. I don't think its a herx, I think it's something in my body that has changed. I have increased the neurotin and it's not working...
I am slightly off balance with some minor twitching...most other symptoms are either gone or just can't be felt over this level of pain. WTF!!!
This is HELL. I can hardly take the pain in my feet. It has come back and broken through the meds AGAIN. :( It is unbearable and making me feel total despair. I don't think its a herx, I think it's something in my body that has changed. I have increased the neurotin and it's not working...
I am slightly off balance with some minor twitching...most other symptoms are either gone or just can't be felt over this level of pain. WTF!!!
Wednesday, May 27, 2009
Wed, May 27th, Day 33 .**** another herx??***************
Feeling shitty. Foot stuff has been bothering me a lot, went back on neurontin full dose after pulling back a bit. feel very wavy, run down, tired. Some back pain, LOTS of confusions, buzzy feeling. Face burning, stinging, emotional. Noticing tummy problems..feeling bloated and uncomfortable, some cramping, burning...
Saw Dr. R today, she doesn't believe neuropathy encompasses wavy feeling..thinks it lyme related...doesn't feel IVIG would benefit me at all, said there is zero literature supporting its use at all..
Feeling shitty. Foot stuff has been bothering me a lot, went back on neurontin full dose after pulling back a bit. feel very wavy, run down, tired. Some back pain, LOTS of confusions, buzzy feeling. Face burning, stinging, emotional. Noticing tummy problems..feeling bloated and uncomfortable, some cramping, burning...
Saw Dr. R today, she doesn't believe neuropathy encompasses wavy feeling..thinks it lyme related...doesn't feel IVIG would benefit me at all, said there is zero literature supporting its use at all..
Monday, May 25, 2009
Mon, May 25th-Happy Birthday Brooke- #5:) Day 31
Wed-Sat, feeling great! No foot issues so I slowly backed off the nuerontin. Had full energy, almost no symptoms. I have noticed though that when I have my period lately, symptoms seem to be reduced. Cant be totally sure. Feet and waviness started bothering me again yesterday so I added back in Neurontin...stinks! They are both bothering me again now. Im starting to wonder if my remaining symtpoms arent totally neuropathy since they are both back once decreasing neuro meds. I do have twitching back as well...i am concerned im on antibiotics for nothing, there would bo no reason if it's all neuropathy.
Wed-Sat, feeling great! No foot issues so I slowly backed off the nuerontin. Had full energy, almost no symptoms. I have noticed though that when I have my period lately, symptoms seem to be reduced. Cant be totally sure. Feet and waviness started bothering me again yesterday so I added back in Neurontin...stinks! They are both bothering me again now. Im starting to wonder if my remaining symtpoms arent totally neuropathy since they are both back once decreasing neuro meds. I do have twitching back as well...i am concerned im on antibiotics for nothing, there would bo no reason if it's all neuropathy.
Tuesday, May 19, 2009
Tues, May 19th, Day 25 **********************************************
Noticing overall energy increase...feeling a lot less wavy and run down overall...feeling a bit more "normal" these days. If it weren't for the foot thing, I'd be at 90%. Dare I say it...
The foot thing is still scary but it's under control for the moment with the nuerontin...i'll take it! Some off balance/wavy sensations now, minor twitching today...still some back of the knee pain...but nothing to speak of(scale of 1-10, i would rate it a 2). Felt great playing with the kids the past coulpe of days, I feel so much more connected and able to be the fun mommy I have inside of me but can't normally be to the besy of my ability. My head has just felt more clear? Huh. Lets see how tomorrow goes...
Noticing overall energy increase...feeling a lot less wavy and run down overall...feeling a bit more "normal" these days. If it weren't for the foot thing, I'd be at 90%. Dare I say it...
The foot thing is still scary but it's under control for the moment with the nuerontin...i'll take it! Some off balance/wavy sensations now, minor twitching today...still some back of the knee pain...but nothing to speak of(scale of 1-10, i would rate it a 2). Felt great playing with the kids the past coulpe of days, I feel so much more connected and able to be the fun mommy I have inside of me but can't normally be to the besy of my ability. My head has just felt more clear? Huh. Lets see how tomorrow goes...
Monday, May 18, 2009
Mon, May18th- Day 24
SO premenstrual, irritable...horrible stiff neck and back upon waking, took ibuprofen for pain-worked well. Leg felt better as the day went on, still having some sensations in my feet:( they are sore...pains in right calf?? random tingles, prickling...
after infusion the pain behind my knee is back??? sore feet, need to take nighttime nuerontin
no waviness to speak of..still twitching...
SO premenstrual, irritable...horrible stiff neck and back upon waking, took ibuprofen for pain-worked well. Leg felt better as the day went on, still having some sensations in my feet:( they are sore...pains in right calf?? random tingles, prickling...
after infusion the pain behind my knee is back??? sore feet, need to take nighttime nuerontin
no waviness to speak of..still twitching...
Thursday, May 14, 2009
Thursday, May 14th- Day 2o
Pain in feet is back. Burning, pinching, etc. Not a 10 on pain scale but getting there. I took 150 in the am 150 at lunch and now 300 at mid day. Still feeling pain/burning, pinching/cold. SO frustrating!!!!!!!!!!!!!!!!!! Nothing is helping :(
Pain in palms, twitching, vibrating, buzzing, sore fingers, lower back is sore, wavy, dizzy at times
Pain in feet is back. Burning, pinching, etc. Not a 10 on pain scale but getting there. I took 150 in the am 150 at lunch and now 300 at mid day. Still feeling pain/burning, pinching/cold. SO frustrating!!!!!!!!!!!!!!!!!! Nothing is helping :(
Pain in palms, twitching, vibrating, buzzing, sore fingers, lower back is sore, wavy, dizzy at times
Wed, May 13th, day 19
Feet were doing well from Neurontin (or so it seemed) for ONE day. Took 150 in the am but by 4, the sensations started to return. took 300 before bed, woke up at midnight with the pain again. This foot problem is taking over my life. Random pains all over, sore palms, wrists. Foot pain is by far the worst of my symptoms right now.
Feet were doing well from Neurontin (or so it seemed) for ONE day. Took 150 in the am but by 4, the sensations started to return. took 300 before bed, woke up at midnight with the pain again. This foot problem is taking over my life. Random pains all over, sore palms, wrists. Foot pain is by far the worst of my symptoms right now.
Tuesday, May 12, 2009
Tues, May 12th- day 18
Awful, awful, awful. The foot pain got incredible last night- I couldnt sleep at all...im in a full on panic. Took a neurontin around 1:30 am. Jamie was up for 2 hours as well, im beyond exhausted. This morning my feet still burn and im getting itchy all over. My hands are tingling now too. I'm very off balance/wavy but prob from lack of sleep ,neurontin and whatever my issue is.
foot pain was bothersome but not as bad as last night- feeling tingles/pricks in hands along with very sore heels of my hands? SO WEIRD! Took a small portion of neurontin late afternoon and it seemed to dull the pain. Did infusion, went fine- brain waves right after. Still feeling wavy, took 300 mg neurontin now...
Awful, awful, awful. The foot pain got incredible last night- I couldnt sleep at all...im in a full on panic. Took a neurontin around 1:30 am. Jamie was up for 2 hours as well, im beyond exhausted. This morning my feet still burn and im getting itchy all over. My hands are tingling now too. I'm very off balance/wavy but prob from lack of sleep ,neurontin and whatever my issue is.
foot pain was bothersome but not as bad as last night- feeling tingles/pricks in hands along with very sore heels of my hands? SO WEIRD! Took a small portion of neurontin late afternoon and it seemed to dull the pain. Did infusion, went fine- brain waves right after. Still feeling wavy, took 300 mg neurontin now...
Monday, May 11, 2009
Mon, May 11th Day 17
Pretty symptom free day except for the returning foot disturbances. Itchy, mild burning, twitching-SO distracting! :( Pains in heels, stabs, etc. On a scale of 1-10, the pain in my feet today is about a 4. Feeling very depressed after researching neuropathy. wish I knew why this was coming on and how to reverse it. Need answers but am afraid there just wont be any. A major question for Dr.J. Just now starting to feel off balance. Read that off balance can also be caused by neuropathy. Makes me wonder..hope im treating the right thing. Trying to stay positive but it's so very difficult. What if this is life long? ALL of it? Am I just now realizing how permanent this all is?
Pretty symptom free day except for the returning foot disturbances. Itchy, mild burning, twitching-SO distracting! :( Pains in heels, stabs, etc. On a scale of 1-10, the pain in my feet today is about a 4. Feeling very depressed after researching neuropathy. wish I knew why this was coming on and how to reverse it. Need answers but am afraid there just wont be any. A major question for Dr.J. Just now starting to feel off balance. Read that off balance can also be caused by neuropathy. Makes me wonder..hope im treating the right thing. Trying to stay positive but it's so very difficult. What if this is life long? ALL of it? Am I just now realizing how permanent this all is?
Saturday, May 9, 2009
Sat, May 9th- Day 15
Was up in the middle of the night with Brooke and nightmares. didnt feel any foot pain. Now that im up for the day, there is minor tingling and some stiffness when first walking..lost of twitching but twitching doesnt hurt..
Late day- 6pm, minor foot tingling, pinching-itchy sides of feet and sides of hands, minor tipsy feeling...feet have been abnormal all day but not as bad as a couple of days ago...going to remain off of neurontin and see...
Was up in the middle of the night with Brooke and nightmares. didnt feel any foot pain. Now that im up for the day, there is minor tingling and some stiffness when first walking..lost of twitching but twitching doesnt hurt..
Late day- 6pm, minor foot tingling, pinching-itchy sides of feet and sides of hands, minor tipsy feeling...feet have been abnormal all day but not as bad as a couple of days ago...going to remain off of neurontin and see...
Fri, May 8 day 14
took a 300 neurontin upon waking..foot pain still bothersome but less stabbing for sure..pain down the right calf..all sorts twitching, random lightening pains...fatigue from either neurontin or other?
By late day, foot pain gone. Calf pain gone. I am not going to take neurontin tonight because I want to know if I was herxing or not...if pain comes back and is unbearable, I will go back on and stay on.
Overall a MUCH better day...a lot less wavy feeling..seems if the pain from the feet is gone, everything feels so much better- even close to 80-90%!
took a 300 neurontin upon waking..foot pain still bothersome but less stabbing for sure..pain down the right calf..all sorts twitching, random lightening pains...fatigue from either neurontin or other?
By late day, foot pain gone. Calf pain gone. I am not going to take neurontin tonight because I want to know if I was herxing or not...if pain comes back and is unbearable, I will go back on and stay on.
Overall a MUCH better day...a lot less wavy feeling..seems if the pain from the feet is gone, everything feels so much better- even close to 80-90%!
Thursday, May 7, 2009
Thurs, May 7th- Day 13
What a horrible night. I took the 600 mg's of Neurontin and two hours later I was drunk as a skunk. I could hardly walk up the stairs to go to bed. I did however notice a decrease in the pain in my feet. Now that I'm up and walking around, it's coming back. I don't know if I can handle another pill while home alone with the kids. I'm going to cut in half as the doc said I could and see if that will suffice. Doc suggested this increase in pain could be from a "die off."
Wavy/dizzy, burning legs,foot pain/pinching/vibrating, some lower back pain, some ankle pain-feet were decreased in pain but not gone..
saw PCP said Neuro prescribed far to0 high of an amount and to start much lower..took 300 at bed time
What a horrible night. I took the 600 mg's of Neurontin and two hours later I was drunk as a skunk. I could hardly walk up the stairs to go to bed. I did however notice a decrease in the pain in my feet. Now that I'm up and walking around, it's coming back. I don't know if I can handle another pill while home alone with the kids. I'm going to cut in half as the doc said I could and see if that will suffice. Doc suggested this increase in pain could be from a "die off."
Wavy/dizzy, burning legs,foot pain/pinching/vibrating, some lower back pain, some ankle pain-feet were decreased in pain but not gone..
saw PCP said Neuro prescribed far to0 high of an amount and to start much lower..took 300 at bed time
Wednesday, May 6, 2009
Wed, May 6th
Left message for neuro yest with regard to feet pain-no return call. it's around the clock-what is going on!? Stopped waking up at night however. Woke up with feet pain, stiff neck, sore back, burning in backs of legs, pins in fingers, twitching, fatigue, some vibrating in feet and fingers.
Has to be a herx, feeling so out of it, sore feet, wrists, dizzy, spacey, feeling run down, tired, confused....like death. Pain in feet, heels, knees, head pressure...no appetite
FINALLY got a call back from neuro, started 600mg Neurotin(7:30) tonight...praying for relief, this is hell.
Sudden pinching from sutures in port..will call to get them snipped off.
Hoping for a better day tomorrow.
Left message for neuro yest with regard to feet pain-no return call. it's around the clock-what is going on!? Stopped waking up at night however. Woke up with feet pain, stiff neck, sore back, burning in backs of legs, pins in fingers, twitching, fatigue, some vibrating in feet and fingers.
Has to be a herx, feeling so out of it, sore feet, wrists, dizzy, spacey, feeling run down, tired, confused....like death. Pain in feet, heels, knees, head pressure...no appetite
FINALLY got a call back from neuro, started 600mg Neurotin(7:30) tonight...praying for relief, this is hell.
Sudden pinching from sutures in port..will call to get them snipped off.
Hoping for a better day tomorrow.
Tuesday, May 5, 2009
Saturday, May 2, 2009
Sat, May 2nd- HAPPY 1ST BDAY JAMIE!!
Woke up at 1 am and could NOT fall back to sleep until almost 4:( WHAT is going on with my sleep all of a sudden?!!! I am so tired, pass out right away and the next thing I know, I'm just "awake." I dont even feel a waking up process, I'm just awake. Foot pain is significant, wavy brain, achy fingers, twitchy all over. I feel like I have little firecrackers popping inside of me-all over. Buzzing/vibrating all over.
Woke up at 1 am and could NOT fall back to sleep until almost 4:( WHAT is going on with my sleep all of a sudden?!!! I am so tired, pass out right away and the next thing I know, I'm just "awake." I dont even feel a waking up process, I'm just awake. Foot pain is significant, wavy brain, achy fingers, twitchy all over. I feel like I have little firecrackers popping inside of me-all over. Buzzing/vibrating all over.
Friday, May 1, 2009
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.
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