posted
Hey all, Going into 3rd week...and noticing my small positive have stopped. For me, these are GI and neuro issues. I was having regular Bowel movements from 1-2/day...now, not so much. And even with regular movements again, still had/having lack of appetite.
Was better first week, bowels finally getting to move again, but now...back to upset, irritated tummy and not hungry. Lost another 4 pounds last month...so this is very discouraging.
The neuro stuff had a breakthrough the first week too...more awareness, attention to detail, alertness...now back to extreme brain fog/Dizziness and lack of focus. In addition, the extreme coldness over body is back...especially hands/feet (even have some fingers/toes kinda purplish). That had been gone for months. Eye blurriness is coming back on strong again too.
Did have have periold during last week (plus full moon same week! hmmm..) And then things just stopped going on the uphill swing...so maybe hormones just unbalanced everything again?
Only other changes, is ND adding some amino acids and melatonin to help with sleep,(tests show exteme lows on adrenals, hormones, seratonins etc...).
How about you others...how you all doing? I'm wondering if I have a co-infection..possible bartonella due to GI/extreme loss of weight issues..(I've lost over 50 pounds since becoming ill about 2 years ago..) and neuro stuff.
Anyone have some ideas/thoughts to offer? Feeling abit discouraged, know it's way early yet, but feeling like I'm already losing what little I've gained.
Thanks friends, JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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Pocono Lyme
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Java,
I know the feeling. I'm into my fourth week. I felt less dizzy etc. the first week also. The appetite hasn't improved either.
Two days prior to the start of Rocephin, I finished Cipro, so I also wonder about bart. I didn't have the GI issues like I'm having until Rocephin.
It is too soon to tell, but tough not to be discouraged. Hang in there friend
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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timaca
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Hi Pocono and Java~
Nice to hear from you both! I, like you, felt better initially on the IV. One day shy of the 4 weeks, I hit bottom, and was in tears.
When I talked with my LLMD about it, he said...that's what will happen to you...about 4 weeks after you start the IV, you'll get a herx as the bacteria die off. Last night while watching a DVD by Dr. B; he said the same thing.
You can also tend to flare around your menses.
Also, at day 12 of the IV, I had a very "lymie" day. That is consistent with when I start any med...I get sick around that day...
Keep track of your symptoms, and number your days 1-5; so you can know, objectively how you are doing.
Yesterday was a 4....normal was in view, and it felt very good. Today is a 2. I don't like 2s.
But, I've been shown God's care today, so I'll share that with you; for maybe it will encourage you too.
I noticed last week that I had black stains on my teeth. Probably from the flora change in my mouth due to all the antibiotics.
I posted a question here, and others had that same issue happen to them.
Today I got an e-mail from a distant friend saying her daughter, who is in dental hygiene school in the town where I'm at needs to clean someone's teeth tomorrow for her appt cancelled. They are only allowed 3 no shows a year. And she had already called 20 people, and no one could come. Did I know of someone who needed a teeth cleaning?, I was asked in the e-mail.
I laughed...for I did. So, I contacted the daughter and she will see me tomorrow. I will have nice, clean teeth soon.
Do I like my "2" days? No. I hate them. But, it is nice to see that God knows about the black spots on my teeth and provides a solution without me even trying....so He encourages me in that way....
He knows about my "2" days too. And someday I'll see the "why" of all of this.
In the meantime...hang in there. This group is an awesome support group too. You have to look at getting well in terms of "months" not days or weeks. Keep me posted...
Hugs..... Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Sorry you're hitting abit of a slump too...have you had the GI probs before IV's? Interesting mention on the Cipro...I've heard that was one of the abx used for Bart. When I first got sick, my duck thought I was having one long ongoing bout of flu and gave me Cipro because I was having battles of diarrhea and contstipation for weeks.
About day 5 of Cipro, and my symptoms just went out of control (shaking, heart palps, numbness, etc...). I've just recently have been putting ideas together and am wondering if I've Bart due to the extreme reaction. Another piece of the puzzle was I started having sleep/Gi issues about 5 months prior to my "flu"...and looking back, at that same time, I was hand raising a group of kittens (about 2 days old) that had been abandoned at the house we had just moved into.
I remember someone saying that scratches from a cat can leave a rash/bump like lesions if the cat was infected...and I had those "rash" like spots all over my hands and arms from getting scratched from the kittens when we fed them. Hmm...all this time I've been thinking I had just had an allergic reaction to Cipro.
How did the Cipro do for you? Did you have stomach probs before taking it, and did it help some?
Are you having progress on the dizziness or head pressures with your IV's? Hopefully, our mentor or another kind soul will come along and offer us some enlightment and words of wisdom to help us through. Just remember, there's pizza and beer awaiting at the end of this maze!
Thanks for checking in Pocono, appreciate the support.. Here if ya need the same! Let me know if you get any wierd cravings that get the appetite going...I keep saying Cheesecake, just in case that's the secret word..so far, no luck, but a girl's gotta try!
Hanging in there with you... JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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Sorry, didn't see your entry until just now. Thanks for being an incredibly supportive and FAST mentor...you're the best. (Now, if we could only get our abx to work so well!)
Yup, definately a 2 day...actually since menses, alot of 1-2 days for last week. Dang, what is with the hormones and lyme anyways?! Don't even get a craving for sweets like I use to.
I'm hoping it's just the herx like you mentioned...being that I'm just starting week 3 though leaves me disappointed some. I'm really hoping for something to get my appetite back and thought I had it there in the first week...
Did you get a bunch of your old symptoms back so soon into the IV? Man, my ears were ringing bad before, but now, just any noise hurts.
Thanks for the quick response...looking forward to the pizza party AND to those 4-5 days!
JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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Forgot to mention...it tickled me on how you will soon be getting a bright, new smile . That's wonderful! And you're so right, God does listen..it's sometimes a surprise in how he responds though isn't it? Blessings come in all sizes and places when we least expect it.
Thanks for the sharing your story...made me smile. (Though your's is probably alot whiter than mine right now...will have to wear my "shades" next time we talk!) JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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timaca
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JavaBeing~
Now, you certainly could be having a herx reaction as you start week 3...I wouldn't discount that. I would also see what happens around 4 weeks of the IV going in....
For me I got hit on day 12 and on day 27 (one day shy of the 4 week mark). So....just keep track of what's happening, for if a pattern develops that can be helpful. (Day 10-12 is when I get hit whenever I start a new antibiotic)
With regard to the bowels moving....I had to back off on the room temp probiotics. I can only take one of those. Any more, and it constipates me. (And I take a ton of iron and that has never constipated me!) The refrigerated probiotics doesn't seem to affect me (go figure). At any rate....if you changed your probiotic use prior to the bowel change, maybe examine that to see if that might be an issue for you.
I didn't get a lot of my old symptoms back like you did (that does sound herxish, huh?)...but I have gotten pain in my back muscles. That's happened this month...
Glad you liked my spotty tooth story. I spent all morning at the dental hygiene school; and it amounted to a very long exam. I will actually get my teeth cleaned next time. The nice thing,though, the hygenist did scrape some of the black off, and it does come off easily, so that is good. Next week, I'll have the pearly whites back!
Hang in there....Find a good book and do some laughing...that is supposed to help our immune systems!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Sorry to hear you gotta wait for the your new "bright and whites"...good to know that it's easily cleaned, will keep that in mind for future reference Nice to know that some of this nasty stuff from lyme isn't going to be permanent.
On the herxing, you brought up a good point...it was about my about my 10th treatment when the downhill crud started up. (again, the menses cycle just bottom things out...)Perhaps, this similiar to what you had occur. Hopefully, the 4th week will be kinder.
Today, was less anxious, but I've got the back pain starting too...mostly around my lower, right back. Don't know if it's kidney related or not...urine has been fine, no pain etc.. but have had pain in this area before, with matching pain in the front area of stomach.
I have a ultrasound scheduled for next week (baseline for gallbladder), don't know if that will show anything in that area or not. At least it helps keep an eye on the gallbladder for the sludge and such.
BTW, do you have any neuro symptoms? (ie: eye blurriness, head pressure, ear ringing, dizziness) Have you found your treatments helpful for them yet?
Thanks for all your input, it helps alot. From other responses, it looks like we are in good company here.
Thanks again for the help and the company... JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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Pocono Lyme
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Hey Coach,
I seem to be following that same type of pattern. Thanks for sharing as it does make it easier in that we could feel this is a normal (yeah what the he** is normal about any of this), progression with IV. Can't wait for them pearly whites too
Java, I've been having the same types of pains until yesterday. Doesn't appear to be gallbladder related for me. I had right rib pain prior to treatment, and since IV, it compounded and spread across my back too.
My first and second week, my appetite improved. Then poof. Gone again. I did gain 1/2 pound back this month. Also back to constipation. Argh.
Looking back at the chart (adopted from Timaca), my third week, also with menses, was filled with ones, twos, and only one barely a three. Sunday a 4 , next 3,then 2, but then 4 and today feels like it's gonna be a 4!
Last week the dizziness skyrocketed and the ear noise. I used to hear "the refrigerator running" downstairs only in my left ear. Last week, it was a small cessna! It's flew away, and dizziness much better again. Hang in there
Same thing with the neuro stuff, eye blurriness etc..
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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beachcomber
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Hey all,
What you describe is pretty much right on par for a herxheimer reaction on Rocephin (or most abx). At approximately 28 days after starting it I had full symptom return and actually felt worse than ever. I was so sick I had my PICC pulled. MD gave me a break for a few days, then I went back on IV and week 5 was better. Things got better after that, with ups and downs, as is to be expected.
timaca
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posted
Hey Pocono and Java~
Nice to hear from you!
As far as neuros symptoms, Java, I had lots of them...feeling like I'm walking drunk, feeling like I'm going to drop things, typing difficult, hard to think through tasks like bill paying (I could do it, it just required more concentration than before), burning, sparking nerves all over my body, head pressure and paper cut feeling in the eyes. But no ear ringing or eye blurriness.
Some of the symptoms have diminished. I can process tasks easier, but my brain is still a bit foggy. I feel less of balance, but I am still some. I don't feel like I am going to drop things anymore. And most days I can type fine. I still have burning nerves, and head pressure that comes and goes.
I had hoped to be much better. But, I'm not. I can say that in some areas, I have seen good improvement...so that is something to be grateful for.
And, while I don't feel well, I don't feel near as sick as I used to. So, I will be grateful for that and hope for continued improvement.
I, too, have some back pain like you and Pocono. Some low back pain, and then very definately back muscle pain going up both sides of my back. This is new to me. And a bit discouraging. So, I am just doing some stretches and back exercises and using Icy Hot to ease the worst of it.
Beachcomber~ How long was your IV in? Did you also notice herx reactions at week 8 and 12 (if you were on IV that long?)
Hang in there everyone.... Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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beachcomber
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Timaca:
I did 12 weeks of IV Rocephin and then switched to oral Ceftin. Stopped all abx after 6-1/2 months. I relpased a couple of months later and tried various orals that simply did not agree with me - ended up in hospital. Finally, went back on IV Rocephin and Mepron. Did the Rocephin for 16 weeks that time but, my vein collapsed & I had to be switched IM meds.
Yup, I pretty much herxed about aevery 28 - 30 days. It was less severe each time. I saw some great improvement on the second round of IV and then improved even further on IM Bicillin. Took a break from meds in April and started back with all Babs symptoms at the end of June.
I am quite functional, thanks to Rocephin and Bicillin. But, the battle with Babs is ongoing and the meds are killing my GI tract.
Just checking in...was having some chest pressure stuff, heart palps,very cold hands and feet,dizziness,extreme weakness (More than usual for me) for last 3 days. Did the lyme mantra "It's just the lyme, it's just the lyme"...blah, blah, blah...we all know the chant.
Took a day off IV to see if things calmed down (this was after 17 days) and happen to be my day for my PICC line. The nurse took my vitals and asked if I was a runner. Told her not in a LONG time...why?
She noted my pulse was 62...and my BP was 122/78, those are great stats! Normally, I'd agree with her, but said for the last 2 years my BP has continued to drop from 120/80's down to about low 100/high 60's...but my pulse during the day is usually around mid 70's...resting/bed about 62.
She noticed that my hands were abit purplish in the fingertips..listen to my heart, asked how my chest was feeling now..."bouncy" I said, she said "yeah, I can hear that, but you know woman with hormones can have that" (huh?) We finished with the dressing and I went off.
That night, I was just freezing in my hands/feet...hot water wasn't even helping...then the chest pressures started back as well as the head spins. Okay, tired of the [email protected] both llmd and PCP...both said Rocephin doesn't do that (speeds up heart, if you infuse too fast, but not the opposite). PCP said go to ER, perhaps the PICC line was stimulating a nerve/heart. (Still waiting to hear from my llmd)
Went to ER, had the EKG...showed normal, but arrymthmias/palpitations, plus BP was 109/60 and pulse was 62, the machine keep going btw 3-20 for oxygen content (?) not sure of what that was, cause tech kept hitting off the alarm saying "it's says you not breathing deep...but it's probably malfunctioning"...it did this for an hour.
ER doc said lyme can do that...but that the electolytes need boosting and did that with a saline drip. After that...my hands/feet stopped being cold and a chunk of the dizziness was gone...plus the next day a normal Bowel movement. For me, this is a big deal...cause haven't been able to do this on my own in weeks...even on IV, it's been iffy. Two days off IV, I was very surprised.
So, any of you have any ideas or correlations of the electlytes and saline drip helping so much for the symptoms? Have you had similiar symptoms? I've never had been THAT cold...they had 5 heated blankets on me and my feet/hands were still ice cold until that drip. My temp at the onset was 98.8 (it had been 97.1 at the PICC dressing, which is around my normal). After my drip, the temp went back to 97.4.
Just trying to figure out if there's something we're missing on electlytes and such. I don't mean just gatorade...but other nutrients that have to get inot the cells to establish balance.
I'm taking many oral supplements and drink water...so didn't think there was anything more I could do. Anyone else doing IV supplements that can shed some light on this? Probably something simple..but it surprised me.
Going back on IV tonight...but wondering if we should be doing more than oral vitamins...anyone have similiar experiences/ideas. Anyone else have purplish digits on finger/toes while being cold?
Thanks for bending an ear....just hoping this may help down the road.
Health and healing, JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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beachcomber
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Ms. Coffee Bean:
Yes, I had all that you describe. I thought my chest was going to explode, then I started to black out. Fortunately, I was at my nurse's office for a dressing change the frist time it happened. She took my BP - very low, even thought my heart was "bouncing", as you say. EKG showed slight arythmia. Pulse was eradic. She suggested I go to the hospital but, it all calmed down after I took a couple of days off of IV.
It did happen a few more times. I did go to the ER twice (or more). While there, I was given saline and electrolytes - a 3 hour drip both times and was hooked up to heart machines until my BP stabilized.
I learned to recognize when this was happening and would stop my drip or just take a day off from IV. I also have been supplementing with Alacer sugar free powdered electrolyte solution that you can get from iherb.com. It has made a big difference, even though I am not on IV any longer.
Rocephin is a harsh med. Your superior vena cava can get pretty irritated by it and/or by the PICC material. Be careful. Always tell your nurse or MD when things just don't feel right. Don't be afraid to speak up. Going to the ER isn't fun but, go if you think you have to.
posted
Hi BC..thanks for your reply. Good to know someone else felt this too. Can you tell me from your experience, does the chest pressure/pulse/bp stuff calm down eventually?
Went back on IV last night (after 2 nights off) now all that stuff is still there. Feels like the stuff my brain should be doing automatically, isn't...
If I lie down, the right side of my chest hurts and I get a headache, if I sit up, the dizziness and numbness through my limbs gets worse...I don't know if this is the Rocephin, or my body just sayng it's had enough. I've gotten diarhea (sp?) last night (before I started IV) and has continued through to early am. Haven't had that problem in two years....
Dang, sorry to vent....I just want to have one of those 3 or 4 days that Timaca has described. I understand herxing and such, but aren't we to have some "down time" somewhere? I just get worried that the heart stuff is really heart stuff and I'm dismissing it as lyme.
Off to have some cheese with my whine.. JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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timaca
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JavaBeing~
I'm SORRY for all that you are going through! What a drag!
If you are concerned about your heart, then by ALL means get it checked out by a cardilogist!! I know you've been to the ER, and that is good (well, not good that you had to go to the ER, but good that they checked you out!)
But, go see a cardiologist too for your peace of mind.
I had heart issues initially with the lyme (before I knew what it was). I saw the cardiologist. He said my heart was absolutely fine.
Once I figured out I had lyme, I went back to him to see if anything had changed...I now have mild mitral valve prolapse...visible on the echocardiogram, but he can't hear it.
He said to contact him anytime I have any concerns with regard to my heart. So, I feel good about that (and I've thought about calling him, just to check in again.)
I'm not having the issues that you are having...but I do have chest pressure, and my latest BP reading was 90/50. So, I may run this stuff by him.
Anyway....if you have concerns....get it checked out by a professional.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Thanks for checking in...appreciate it. Man, if lyme is to suck this bad, there should be a margarita at the other end of it!
Wow...sorry to hear you have this as well. I haven't had a cardiologist mentioned or offered by any doctor...ER or otherwise. The ER doc just said that "lyme can do that"..meaning, I guess the heart stuff. Not very comforting when you're the one with the wires hanging out from many places.
Did you have those problems before the IV Rocephin program? Not sure myself. I've had the fast heart rate, arrythmias, murmurs etc...when I first got ill...that's what started this adventure for me. But haven't had much issue since...and while on Biaxin, things seemed calm. But I've had the chest pressure feeling abit before going to IV.
Now, it's just increasing along with the ear ringing, head pressure....and the downward pulse rate is new (before IV started, i had it go up to 110 bpm for like an hour or so, right before my menstrual cycle started...). Even now, it's still real tight feeling...been that way since last night ( and ALWAYS on the left side...not the right like I'd expect with my PICC on my right arm.. )
We're infusing at about 40-50 mins...extra slow probably i know, but heard about the heart racing if you go to fast..so have always taken the turtle approach there.
How does the echocardiogram work by the way? Was there any treatment given to you for the mitral valve problem....?
Thanks for letting me toss out all the out here...I just want to dig myself out of this tunnel one way or another.
Thanks again Coach for the help and the pep talk.. JavaBeing (though maybe changing soon to "percolator" if heart keeps bouncing around!)
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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timaca
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JavaBeing (or percolater as the case may be)~
My initial lyme symptoms (before I knew it was lyme) was a two day dizzy spell, followed by a rapid (very rapid) heart racing episode that lasted for 45 minutes. That was immediately followed by a 30 hour bout of extreme fatigue.
Those symptoms landed me in my doctor's office, and he got me in to see the cardiologist pronto like.
Neither could find anything wrong with me.
I ended up with the extreme fatigue repeating itself 3 months and 4 months after the initial bout.
The rapid heart racing repeated itself too (but this time not in conjuction with the extreme fatigue). Sometimes it would last for over an hour (that was a drag).
It hasn't happened in over a year though. (I think, I'd have to look back at my notes).
But, earlier this year, my heart was acting up in other ways...flip flopping, and feeling like it was up in my throat, etc.
I saw the cardiologist about the time the picc line went in (by this time I knew I had lyme). He did the echo, and noticed the mitral valve prolapse. It is very mild so he said he would just see me again in a year, UNLESS I felt the need to come see him for any reason, at which time he'd probably put an event recorder on me, and record what my heart is doing all the time. (I think an echocardiogram is kinda like a "sonogram" that you do on a baby...you can see the structures of the heart with it, and watch how it pumps blood)
I had a 24 halter monitor when my symptoms first started...and in that 24 hours my heart was deemed "fine." Now, he would do the event recorder (if he thinks I need it) and I think that stays on for 30 days.
At any rate, I would encourage you to see a good cardiologist if you have any heart questions at all. This is no fun, for sure...but it helps to know that things are relatively ok in the heart dept. We have enough to concern us, without worrying about that!!
The chest pressure seemed to come on after the IV started. I have not talked to the cardiologist about that.
Sometimes I get a different kinda pressure, which may actually be related to what I eat...it seems to go away, and it's hard to describe, so I won't try!
Good luck, my percolating, javabeing IV buddy. Keep your chin up, and your heart steady (as much as you can!) Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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beachcomber
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OK, Java:
Yes, the chest pain did come and go for me. Initially it was so bad that I did go for a complete cardiac workup, Holter monitor, EKG, Ecco, the works. My cardiologist did find a small hole in my heart, right about where the meds where dumping. She also noticed that my PICC was touching the top of my heart. So, I had that line pulled. I had a new venal port (midline) put in every 10 days until my heart calmed down - no chest pain with those because they only go up to about your shoulder or lower. But, my superior vena cava did become irritated by the Rocephin, which a full PICC can protect you from because it lines the vein.
Also some people are very sensitive to the platics that are used in the PICC. This can also cause chest pain.
Always mention the chest pain or pressure to your nurse and/or MD. If it is the PICC that is causing problems there are other options.
My second go around with Rocephin was much better. The PICC was fine, not much chest pain. But, eventually my vein did collapse and I was rushed via ambulance to hospital to make sure no fluid had gotten into my lungs. That was after 16 weeks of really good progress.
After that I swicthed to IM meds. But, I would do IV again if my MD recommended it. IV got me to a better place - I could walk and exercise and work. Prior to that I could hardly get out of bed.
Well, just coming off a couple of those 2 days...but doing better today Had a visit with a new duck yesterday who (and I'm still holding my breath...) seems to be pretty open minded about lyme and it's many fun-filled faces of symptoms.
She suggested a echogram as the EKG can not pick everything up, nor can a doctor hear all that could be going on. And, as she put's it...the peace of mind you'll have will help down the road as well. (Finally, a light in the tunnel!)
I took hubby with me, one because she's his doctor as well (just changed coverage..and we both happened to choose her!) and two, you know with lyme brain..we tend to go over points we may have already said, and he helps "fill in" voids. (I hate that...after being a cop, I'm used to getting to a problem, finding a solution for it, and then moving onto to the next situation.
Since lyme, I ramble on like an old record stuck in the same groove...trying to get to my point. The decrease of cognitive functions to me is the worse..makes me feel like we have to over explain our situations to validate both our disease and ourselves as people. Total nonsense..
Anyway, thanks Timaca...when she suggested a echocardiogram instead of the usual "EKG looks fine..so you're good" quack sound we get...I felt some progress had been made. Haven't had a duck yet suggest this. (BTW, brain is a little less fuzzy today, so I'm upgrading to a 3!
BC- I'm very interested in that Alacer electrolyte. Thanks for the suggestion! How often do you take it and did it help with some of the above mention symptoms?
Pocono--Haven't heard from ya, hoping everything is going okay. Know you're going into your 4th week now...send that any herxing will be quickly over with.
Thanks to all the "buddies" for being there... JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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beachcomber
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Latte Brain:
I guess that is what a Javabean is like with Lyme.
I take the electrolytes, mixed in water every other day. I have the Big D from Babs meds so, I take it to avoid getting dehydrated.
Good on the Ecco. It is a good tool for diagnosis.
Pocono Lyme
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posted
Hi Buddies,
Java, sorry you've gone through the heart issues. I can only say that before Rocephin, I had palpitations, what I felt was atrial flutter, felt like my heart was flip-flopping in my chest. Also had the heart racing.
It pretty much resolved with treatment for babs and bart until after my first dose of Rocephin and again two weeks later. Haven't had it since. Pretty scarey.
I saw where your sodium was low? Is it possible for them to mix your Rocephin with saline solution? I know the Dextrose allows better BBB penetration, but maybe they can mix it with D5NS. (Both)?
I have been doing the charting like our coach suggested and I love it. I'm into my fifth week now and I'm amazed when I look back at all of the "1"s and "2"s with a rare to occasional "3".
Now I'm seeing some "4"s. You'll get there. Boy I hate those "1"s and "2"s now. I still get them but less often. but then again, that's all I had for the past couple of years. So grateful for those "3"s and especially "4"s
Java, one thing I did notice is, if I run my IV any less than a little over an hour, I will get the heart racing. I run it over probably 1 1/2 hours as that heart racing is way too scarey.
My dizziness is resolving. I got some relief from this with bart treatment and now more with Rocephin plus getting the yeast more under control.
I had the same reaction as beachcomber and timaca with hitting rock bottom at day 27. Hang in there and thanks to all
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hey to Java, Bc and Pocono~
Glad to hear from you all!
Java~ That's great for getting an echo scheduled! Let us know the results! With mine, my heart was fine when my symptoms started, and a year and a half later I have mild mitral valve prolapse that he can see on the echo, but can't hear with the ears. So, hopefully, it won't get worse.
You might take to your cardiologist some articles on lyme in general and lyme and cardiac issues. For the latter try www.lyme.org/conferences/98_abstract.html Scroll down until you find Dr. K. L. on Lyme Borreliosis and Related Disorders. He discusses cardiac symptoms.
Bc~ Glad to hear that the IV got you to a better place. I've been having quite a few "4" days. Normal is actually on the horizon now, instead of no where to be seen. So, that gives me some hope.
Pocono~ Glad you're having some more 4s too. It IS good to look back at the 1s and 2s and see that progress has been made, huh?
And it is interesting to note that others have hit bottom on day 27 of IV. Helps to know that, too.
Glad to check in with everyone....keep in touch...
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Hi to all of you IV rocephin buddies..I am new to this group I started the IV last Thursday the 22end ... I started aching and twitching heavier, vibrating, headaches and feeling overall very bad by my fourth day.. I had been on Doxy for the last four months so I did not think it would hit me so hard..So fast. For those of you who have felt fairly well on this treatment thank goodness!! I am curious what are you counting from 1-5? 1being the worst or 5 being the worst?
My brain is on overload so forgive me.. but someone was asking about being very cold after recieving the medication...I was told when I first started mine that this is not uncommon and I was warned this could happen..It did not happen to me. I was also told that if your med is pre mixed and refridgerated just prior to using it, it may be a good idea to give it 30 minutes to warm uo a little.... My husband had to be trained to mix and insert my medication as I could not afford a nurse to come in daily and do this for me..all I can afford is to have my dressing changed weekly...so it has been a little scary.... It is nice to have all of you here to read your messages and talk to... thanks you... Sondra
little..I do not know if that is the case ..
-------------------- Love Sondra Posts: 3 | From napa, california | Registered: Sep 2005
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timaca
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posted
Hello Sondra!
Welcome to the IV buddy group! Always glad to have new members!
Sorry you got hit so hard by the IV meds. But, perhaps that is a good thing, as it may be indicating that some spirochetes are dying off!
The "1" to "5" is a way of charting how each day feels to us. I just write on a calendar what kind of day I've had, so I can see if over a period of time (read: months), I am actually getting better.
"1" for me means I'm down. Can't really move. "2" means I can function, but very slowly and I feel awful. "3" means I can function, and maybe do something extra, like make some cookies, or clean something in the house. "4" means I can function, do something extra, and even have some enthusiasm. "5" is a really good day (for having lyme)
I also try to write on my calendar any major symptoms that is occuring...headache, nerve burning, etc. This is major, not what occurs on a daily basis (there wouldn't be room on my calendar for what occurs each day!)
Don't be scared of your medication...you will get used to it, and this whole picc line will become second nature to you. (I've had mine for almost 4 months now...)
Do you infuse your medicine over time, or use some sort of method of pushing it in faster?
Hang in there....it will get better
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
thanks for the welcome..I have a little pump as I assume the rest of you have that slowly inserts the med after mixing and putting it into a syringe... My arm itches like crazy where all the tape is..but so far no swelling..have any of you had any swelling, pain or minor infections at the site? I hope not.. I realy Like the 1- 5 system I will be using it as well... you can tell how new I am to this.. we will all make it through
-------------------- Love Sondra Posts: 3 | From napa, california | Registered: Sep 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi buddies!
Interestingly enough, I crashed exactly the morning of week 16 of the IV...had lots of muscles aches in the back and chest area. Just couldn't sleep. Then I felt sickly all day. The next day had a migraine.
They say one can "herx" at week 4, 8, 12, 16, etc. Well, I sure as heck got hit again! Just thought I'd let you know!
Sondra~ I've not ever had any problems at my insertion site. So far so good! Hope it continues!
Hopefully, I'll work my way up to some 3s or 4s this week. I was definitely in the 1 to 2 range the past couple of days! That was quite a decline from the 4s I had been feeling!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Hi Guys,
Just checkin' in. Hope you're all seeing improvements. I've had a variety of symptoms, new ones, old ones, exacerbated ones, lessened ones. OK here's a strange one, sweating only on one side of my body. Was hoping to add Rifampin but no back on Mepron instead Can't go as planned, of course. I guess the worst is the dizziness yet , still some confusion and disorientation though improved. Then the eye symptoms, broken blood vessel in one eye. Couldn't wait for Halloween ,swollen eyelids, blurred vision.
Kinda' crashed a bit this week, #6 just completed yesterday. I'm of the lucky type, have to herx every 2 weeks or so, with menses, without menses, on special occasions, full moon, I'll hit them all. Still doing the 1-5 scale, but have to be different with that too . Some days, like today, I can function better, but still feel awful. Love looking back though, it keeps me going when I see those ones and twos. I may not be having all 4's or even one 5, but I'm not having those 1's and not many 2's either.
Java, I think I may have to get the gb checked also. I've had a nagging kinda' pain on the right side for years now and can't decipher where its origin is. Sometimes rib, sometimes lower, sometimes in the back. I'd rather just switch meds than another trip to the hospital and more tests. Welcome Sondra Thanks BC for your input and of course timaca
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi there Pocono~
No...I don't sweat on just one side of my body..but I swear that nothing is impossible with lyme.
Last night, while trying to fall asleep, I had 3 different areas on my body, a spot on my arm, one on my side and one on my leg, that, all at the same time, had 3 zingers happen. Ouch!
I think we lymies could write a book about weird bodily symptoms that no one else would believe but us!
Sounds like it would be good to get your GB checked out.
I'm glad that the scale is useful to you. It does help to track your symptoms.
The last several days have been 2's for me. I also have my period. In talking with a friend, she thought my symptoms could be a result of not enought estrogen. I had headaches for 3 days, more fatigue than usual, and a heaviness in the chest area.
I had been reducing my hormone pill to 5 days a week....trying to wean off of it. (I had started a hormone pill because I had severe PMS about a year ago...before I found out I had lyme). Perhaps in trying to wean off, I am getting hit with those symptoms.
So...this next month, I will take the pill 6 days a week, and see if that helps. It's all trial and error, huh?
Oh, interestingly enough...in doing some reading on co-infections, I am wondering if I don't have ehrlichia. I had a rash 10 years ago on the trunk of my body and on the palms and soles of my feet. Now, my WBC tends to be in the 4s and my platelets are certainly not on the high side.
What are your WBCs and platelet counts??
Hang in there.... Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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