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TeeDee I am doing fine so far. I am on day 7 of rocephin. My PICC exit site looks good. The first four days I had weak pain in armpit and pain in upperchest and neck, yesterday and today have been pretty good. My nurse just left and the site was cleaned for the first time. All they put down was a clear bandage and she had to use the tape that I already showed allergies to. She could not change the line extension or end because they sent me the wrong parts. The part they sent was to short. I was told I should not mow my lawn and if I had to I should do it the day before she sees me.

One thang I have noticed about an hour after infusing is that I get feeling colder and very fatigued, more so than normal. Also my headaches are comming back, I have had four in seven days. I was down to one a month! Even though I have not run a fever I have felt very feverish. I have felt more spaced as well.

I hope you both are doing well and this time next year we can laugh about it.

Derek
Hi guys....glad to hear that you are both surviving and seeming to wade through the increased symptoms you're having. wish I could say the same. dr. c has put me on a couple of new rx's to help me out with the extremem nauseousness and dizziness i've been having. Phenegren and actigall. At least my symptoms for those are minimal now, maybe teedee you could ask your doc about the phenegren? i know it helps me tremendously so i don't feel like puking my guts out. I just wish they could do something for my pain. I'm herxing terribly now, am on day 9 of my 2g Rocephin treatment. Depsite my vicodin, I am still waiting down the time til I can take my next dose. I am really concerned about the swelling I'm seeing in my hands and feet...they are extremely red at all the joints, swollen, and very bruised. Not too mention all of the intense flu feelings, brain fog intensity, severe spike in fatigue - it almost feels like narcalepsy, and the itchniess and "lobster" flushing attacks are extremely bad. I've been taking benadryl and trying to take baths when I can, but I am just too weak.

Have a call into the doc to see about taking a few days off of the rocephin, kind of like what your doctor ordered for you TeeDee, guess I'll see what they say. Think my bod could use a rest from the meds for a few days. I just can't go through another night like the last one...wanted to go to the er I hurt and itched so bad, and every sound or light was like a knife in my head. All I wanted to do was fall asleep, but I couldn't. This whole situation is just so depressing. I hate feeling worse to get better. But finally was just so exhausted from crying, itching, and hurting that I passed out thankfully - would have gone to the er for sure if it hadn't have happened that way, was already at my limit for vicodin and benadryl and still had 2 hours to wait to take another dose and felt like i was going to go out of my mind.

oh hey - good news...the doc office just called and i am supposed to stop my dosing until the swelling goes down. they were definitely concerned about the high level of pain and the herxing, so they want me to stop for a few days and then restart when i feel stronger. i am so relieved on one hand, but on the other wish i was strong enough to wade through this to get better sooner.

well better go for now guys, glad that you started this post teedee. hope you both will continue to fair well and make some progress soon. keep us updated, i hope we'll all be sharing good news soon.
Hi all...just checking in to see how you are all fairing after the weekend. Any good news? None here, posted on the main board cuz I was just so down about how bad I was feeling. Feeling a little less nauseous and less swelling and pain right now, but still feeling crappier than I was before starting the rocephin. But still praying I'll see some positive results in a few weeks. Hope you're all seeing some positives. :)

Bothrops ~ just a suggestion about your skin allergy. I have the same issue with most kinds of tape and adhesives, I have found that "silk tape" is the only thing I can tolerate. Not sure if there's a different name for it but that's what my nurses call it. Maybe that will help you out? Worth a try I guess. Also since my line is a hickman I have to have a cover over my site on my chest and they use soemthing called Sorbaview and I don't break out to that either. I think if you just have a PICC you probably can't use that since it's like a big square bandage, but just thought I'd mention it since it's worked so well for me.
Good sugestion Romans,
I think it will be alright, it itches every now and then but it is so trivial compared to the dizziness/fog, pain and weird sensations. All my symptoms are slightly increased, like one point on the 1-10 scale. I hate that you are going through so much right now and like every one here, I feel for you. I have a real good feeling that you will be feeling fine real soon.

Keep your head up!

TeeDee and GomazNC how are you all doing?
Hi guys... I am off of the Rocephin again as of today, my body can't handle it. Pain meds and ice packs aren't helping at this point so I need some relief. So I will be going into to see my local doctor on Monday or Tuesday to get some more pain meds, plus discuss whether my dosing schedule should be changed to some kind of pulse therapy. Also I am concerned about my jaw...it's popping out of joint everytime I open my mouth. It's really quite annoying and painful. So hopefully I'll have some answers afterwards, maybe even some positive news. That would be wonderful.

Bothrops ~ really hope your new infusions will do the trick. What is the climdomycin for? a co-infection or for the lyme? keep us posted on how the change goes for you. also I am taking 2 grams of Rocephin since you asked about it.

TeeDee ~ just was wondering where you got the florastor from? can I find it at walgreens or a pharmacy? I think my stuff isn't doing the trick anylonger either, as I've been fighting the whole yi and gut issues myself. If it helped you maybe it can help me too.

BDFM ~ Thanks for checking in on us. I hope your homeopath beads will help you too. I keep you in my prayers that the samento will start helping you soon, I know you've been taking it for a bit now. Hopefully what you went through was a herx, that would be a positive step for sure. :)
Hi PICC line people,
My 14-year-old daughter is scheduled to get a PICC line on Tuesday and start Rocephin the same day. She was diagnosed in late July, but has been sick for at least a year and has neurological symptoms.

The question on my mind today is whether I should ask the doctor in advance to prescribe pain relievers for Tuesday after the line goes in. Did any of you need more than o-t-c pain relievers? From reading this thread, it sounds like the procedure was pretty easy for most of you so I'm guessing not. Yet elsewhere, I believe I read about an adolescent with a PICC line who needed a day or two of percocet to get through the early discomfort. I'd rather be prepared and not use it than have to call the doctor and make a run the pharmacy if she's in a lot of discomfort.

Another question. Do any of you use co-flex to wrap your IV? Are you able to buy it at a local med supply store or do you have to order it on line? We found a site on line and she picked out a half dozen colors she liked (fashion is very important at this age!), but when I realized the postage was going to cost more than the co-flex I asked her to wait to see if we could buy it locally. (We live in the Northern Virginia suburbs of Wash, DC)

Thanks for any thoughts you have on my two questions.
Lesley
Good morning all....talked with my doc today and my rocephin is now scheduled for 4 days on and 3 days off. Maybe this will help me bring down my pain level from an 8 or 9 constantly to a more bearable 4 or 5...wouldn't that be grand! :) So today is my last day off then I start back up tomorrow. I'm anxious to see if the new sched will start providing some relief and maybe I'll see some progress.

TeeDee ~ thanks for the info on the Florastor, I'll try to have my mom look for it when she goes to town today. Hope you are still plugging along and maybe strating to see some positive results!

:wave: Lesley1954....welcome to the board. Sorry to hear about your daughter, but I am very glad to hear that she is being treated and getting her PICC line soon. I have a hickman iv in my chest but I had a PICC line as a teenager when I first had lymes, it didn't really hurt too much to begin with. Both then and now though it's the herxes that I need the pain meds for. So hopefully she will be okay with just the otc stuff. I have never heard of that co-flex, so can't help ya there. Maybe the others will have an idea. Hopefully the procedure will go smoothly for your daughter, please keep us posted on her progress. We're glad to have you and her here! Hopefully we can all get well together. :)
Dear lesley,

I hope that all goes well with your daughter's picc-line. When I had mine put in I made myself sick over it and it was a breeze. I never needed anything even otc for pain. There just wasn't any. Poor Romans has been having as hard a time on the IV as she did with the orals. I'm sure you have read.

I personally am a bath type person and in the beginning I was wrapping saran wrap and tape around the line but then I just gave up on that and was careful. Just be sure you don't get it wet. I would just rest my hand/arm on the top of the soap dish in the tub wall and that worked great. But your daughter may feel more comfortable with some protection, especially a pretty one.

I don't know if I mentioned to you before but the nurse at my ID's office used to pull an elasticized open weave sleeve over the pic-line and extension so it wouldn't get tangled under clothes. She would wrap the extension in a circle and pull the sleeve over it. She gave me extra ones each week and I pulled one from the bottom of my arm and one from the top so that they overlapped and this made me more relaxed about the picc-line not floating free. Especially at night. She just cut these off a long roll she had and gave me numerous pieces because after a few days they tend to stretch out of shape and seem to get shorter. She also put a large gauze bandage where the end was hitting my skin so it was cushioned.

I hope all goes well for your daughter. Let us know and our prayers are with her.

Betterdaysforme
Hi, Lesley.

I'm one of the lucky ones - I've had absolutely no problems with the PICC line and no pain during or after the insertion (this is day 19).

We went out of town for the weekend and while I have neurological issues with balance and walking (I was diagnosed with MS in '92), I can honestly say that I'm beginning to feel positive changes. I had problems when I first started the Rocephin (diarrhea, nausea, yeast infection) but began taking an OTC product called Florastor that relieved almost everything. I also drink a probiotic every day called Kefir that helps keep things in balance as well. You can do an online search for both to find out where to get them.

I'm really glad for you and your daughter that you found this board. I don't think you could find a more caring and informed group of people to lean on when you have concerns or questions. And to top it all off, we pray for each other and some of us are rather new at this spirituality gig but I, for one, am learning that there is a higher power ready and willing to help us when asked!

I'm adding you and your daughter to my list of "Lyme-friends" and wish you the best.

TeeDee
Hi all....TeeDee I am SO happy for you! It is soooo good to hear your progress and about your fun night out. A night out with a movie and dinner...how exciting!! Can't wait till I can say the same. And Lesley I do remember you from you're posts way back when now that you mention it...didn't make the connection the first time you posted here though. But I was relieved to hear that your daughter's PICC line went in well and that she is feeling worse - means it's working and that's positive news!

I am still in the dark for good news. I've spent the last 2 days supremely nauseous, actually throwing up a few times which was a first for me for a long time and out of my mind in pain depsite the phenegren and vicodin. Tuesdya I turned the brightest red "lobster" as I have in months, actually looked like my skin was bleeding underneath. Yikes. But I'm up a little bit this morning as I have to make the 10 minute trek into town to see my doc today. The ten minutes always seems like hours and leaves me super exhausted, even though I'm only the passenger. But maybe he'll have some ideas of how to get my jaw back in joint so it'll stop hurting and popping all the time, that's the only motivation to go in there today. Well that and I'm pretty worried about my ciruclation again as my feet and hands look pretty yellow and pale, despite the huge bruises from the swelling in all my joints. Will keep you all posted as to whatever his ideas are...

Bothrops and Gomez ~ how are you guys doing? hoping you are both feeling better and just having so much fun that you're too busy now to post!! :) hope to hear your good news soon.

Lesley ~ tell your daughter she's in my prayers and to hang in there, we'll all get through this together. oh and did you guys end up getting the colorful covers for her PICC? hope she is styling in a lovely color...wish they had had that option for me in 1993 when I had my first bought with lyme. I had to settle for a plain white covering...imagine that! :)

Later all...take care and have a good weekend.
Sorry I haven't kept in touch. Dealing with extreme nausea and joint pain. I just want to stay in bed and cover my head!!! I started adding the Climdomyacin infusion to the Rocephin, I don't know If i can keep it up!?! No fun at all!! I can't stand the thought of food, but I need to eat something before i infuse. Taking probiotics twice a day and that has helped the Diarhha, but I feel so sick to my stomach!! I have noticed some improvement with the "brain fog" and cognitive stuff, but that is the only thing that has improved at all. Everything else seems worse!!
Nancy,
My 14-year-old daughter was diagnosed with Lyme in late July. The doctor decided to start with IV treatment because of the length of time she has been sick and because she has a lot of neurological symptoms. I removed several deer ticks from her 3-5 years ago and she has been having symptoms for more than a year. Before her symptoms started, she came down with shingles, unusual for a 13-year-old and in my mind probably a sign that her immune system was no longer able to battle the Lyme. Her earliest symptoms were sick, feverish feelings, followed by burning pain in her neck and upper back that doctors quickly attributed to hormones, heavy backpacks, etc. She became more seriously ill around Thanksgiving, developing constant visual disturbances (although her eyes are fine), dizziness, chills, tinnitis. A long the way she received diagnoses of CFS, FM, and POTS (Postural Orthostatic Tachycardia Syndrome). She had several negative Lyme tests in the late spring, which set us back in terms of figuring out what was going on and seeking treatment. Finally, I begged my doctor to send a Lyme test to Igenex and it was positive. Like you, she had a positive IgM and negative IgG, which I have read is common with Lyme.

Although she has only been receiving treatment for two weeks, we are feeling very hopeful that the doctors have finally figured out what is wrong and that she will fully recover. I hate that there is so much political controversy around Lyme diagnosis and treatment. I can certainly appreciate how frustrating it is for you right now as you are trying to make sense of all the information you are receiving.

Lesley
Romans,
Let me add my well wishes for your trip to the others . I hope you will be able to get some sleep before you go -- almost a week with little or no sleep is dreadful! Could Dr. Crist give you something to help you sleep before the trip and on the way there?

TeeDee,
I'm sorry to hear about your backslide, but it's interesting to know that you suspect it may be a herx since you are in your 4th week of treatment. I have read that many times, too, and am wondering what next week (Sara's 4th week) holds for us. Unfortunately, it will also be her first week of high school. Overall, her energy level seems better and she complains less about being dizzy. However, it would be hard to say there's been any dramatic improvement. She still complains daily about bad pain in her neck and lower back. She doesn't say her visual disturbances have improved any, but she also doesn't complain about them as much either. Maybe because she is hoping for eventual improvement. Nurse comes today for blood work. Back to the doctor Thursday for routine check.

Lesley
SickandConfused ~ Like Lesley's daughter sara, my dr put me on IV b/c of increasing neurological issues plus the fact I continued to get sicker despite the oral antibioitics I was taking. My CNS Lyme is so far advanced that I pretty much herx every day and when I was on orals I had an extremely hard time taking more than a sliver of a tab even a few days apart. My herxes were just so extreme and painful no matter what I tried. So last ditch effort has been this IV. I definitely wish I could take the orals and get better, but that was not possible. I understand your issues with the nausea and gut stuff, but truly I hope orals work for you...I would trade ya in a heartbeat.

Lesley ~ I soooo sympathize with Sara on taking all the pills. Like her I take about 35-45 pills a day. Like you said about her I also wish I would take more, but there are just so many right now that I can't stand the thought of adding more. What with the pain meds, lexapro for my lyme caused depression, plus vitamins, minerals, primrose and fish oils, melatonin for sleep issues, perscribed amino acids for my neuro issues, proibiotics, nystatin (for the yeast), and also actigall as well as milk thistle for my liver too. Some days I wanna go on strike from all the pills...but I feel so much worse when I don't take all of them so I force it all down throughout the day. Lesley...Sara is such a trooper. Please tell her I said hi and good luck with her first days of school. I remember how hard it was for me the first time I went through all this at her age. I had Lymes back when I was just 14. Unfortunatley I missed all of my 9th and 10th grade years and had IV treatments for most of that time. I was so ill I had to have a tutor. So I am very happy that she is okay enough to still go to school despite how yucky and awful she feels. Like I said what a trooper. I am so glad she has you to help her through this.

Off to eat some supper all....have a good evening. :)
Hi Romans,
I'm sorry to hear about the heart pain and palpitations. I agree with the others who recommended getting seen today, as unpleasant as that may be. I hope you were able to reach someone in Dr. Crist's office.

You asked about Sara's heart issues. She was diagnosed in Jan with POTS, Postural Orthostatic Tachycardia Syndrome. You may be familiar with it. It falls under the general category of dysautonomias and more specifically, orthostatic intolerance. Although it is often diagnosed through a tilt table test, in her case they did the "poor man's tilt test" where she stood quietly for 10 minutes while they continuously monitored her blood pressure. Her blood pressure dropped a bit (at that time it was running about 80/50 normally) and her heart rate increased from 70 to 129 in the 10 minutes of standing still. She feels the tachycardia and finds it unpleasant, sometimes describing it as a fluttering or a feeling like her heart flipped over. But she seems able to control it by sitting or laying down and it has become less of a problem over the past six months, perhaps because her blood pressure has risen somewhat. She takes salt capsules to increase her blood volume and raise her blood pressure. She's also put on about 10 pounds, which probably helped raise her bp a bit. There was a time her doctor was talking about giving her medication to raise her bp and another medication to control the tachycardia, which sounded like such a drag for a 13/14 year old girl. It wasn't too long after that the Lyme diagnosis came back, so her doctor is hoping abx treatment will eventually resolve her POTS issues.

She starts her 4th week of treatment tomorrow. No dramatic improvements, other than she is no longer having chills all the time. This is a big quality of life improvement for my husband and I, who had a hard time driving around in 85 degree weather with the heater on! A few hours ago she complained about feeling really bad -- headache, sore throat, sinus pain, and hip pain. I thought, "Here it comes, the four week herx... just in time for the beginning of high school." Then, lo and behold, her latest "crush" called to see if she could go bowling and she was up here telling me about her miraculous recovery, no doubt due to the ibuprofen I gave her. It wasn't easy, but I said no to bowling, especially given her hip pain and the fact that her PICC line is in her right arm. Now, she's talking about a movie and I'll probably give in. I know she truly feels bad, but as you know, being with a special someone can lift your spirits and make you feel better.

Her check up was basically fine. Doctor says he expects she will need a minimum of 6-12 weeks of IV Rocephin so it is good he's thinking beyond 6 weeks. He is not an LLMD, but at our request he has consulted with Dr. Jones and another LLMD in our area (who we will be seeing in mid-Sept). We also have an appointment to see Dr. Jones in Dec. Her doctor is an internist who has focused on CFS and FM and after his experience with Sara is clearly interested in seeing whether Lyme may be an issue for other of his patients. When the diagnosis was made, he was willing to start her on IV treatment right away and it seemed like the best way to go. There are not many LLMD's in our area who see children and the waiting lists are long. But there are things he doesn't know, like how to interpret some HLA genetic factor tests Dr. Jones wanted him to have run. She had several positive findings, but he didn't know how to interpret them. I asked him to consult with Dr. Jones about it. I guess it has to do with a predisposition to developing autoimmune disease as a result of Lyme. If there's anyone that knows more about this, I'm very interested. I think the factors they were testing for are HLA-DR2 and DR4, except those weren't the numbers listed as positive on the lab report. Also found out that he had ordered the wrong coinfections panel from Igenex. The one he ordered only tested for Erlichiosa, so we still need to test for Babs and Bartonella. Since her appt was Thur, it was too late in the week to do an Igenex test.

And you asked about me. Yes, I had my blood drawn for an Igenex WB two weeks ago tomorrow. I asked my family practice doctor to order it based on the fact that I was bitten the same time as Sara and had been complaining to her about problems with short term memory and cognitive decline. I suspect I'll hear from her this week. (Gulp!) I don't know what I hope the result will be. My father died of Alzheimer's last spring and until Sara was diagnosed with Lyme, I feared I was seeing the early signs of Alzheimers. I also know a negative test doesn't necessarily mean I don't have Lyme. It's hard to think about potentially shifting my focus from her treatment to my own; at the same time, I don't want to regret not acting a couple more years down the road. I'll keep you posted.

I truly hope this post finds you feeling better and I will certainly be thinking of you on Wednesday when you go to MO. You are very sweet to worry about the rest of us with so much going on in your life. Take care,
Lesley
Shanna,
I'm sorry to hear how much pain you're in on this new medication. I hope that adjusting the number of doses will make it more tolerable. It just is not fair for you to suffer so much. It was interesting to hear how you, like my daughter, hated being questioned about your symptoms as a teen-ager.
Lesley

Carol,
Re: POTS and OI, it is definitely the case that people with these disorders of the autonomic nervous system feel more uncomfortable when they are standing still (or even sitting still in an upright position) than when they are moving around. Moving keeps blood pumping back to the heart and brain. Standing or sitting allows it to pool, especially in legs, leaving you with too little blood getting to your brain, thus the lightheadedness, etc. If you didn't find it already, one of the best web sites on POTS is www.potsplace.com. Also the National Dysautonomia Research Foundation has a discussion board (www.ndrf.org). Sara has never reported having the feeling you described in your throat. Hope this helps and good luck to you.
Lesley
hey all...how is this monday for you? wish i could say "great" for mine, but this is just the first day out of bed for me since starting my new iv primaxin on thursday. i feel like i am going to just die. i am again herxing constantly. i spent about an hour yesterday on the phone with my b/f just falling to pieces. this is just so hard to deal wiht. i hate having to feel this bad to get better. my pain meds are not helping and neither is taking a break from the meds. dr c told me to just take it 1 x day instead of 3 and i am still taking a beating. i am so frustrated. everything that could hurt, does. my hands/feet are swollen and bruised, not to mention that hearing a pin drop across the room just makes me wanna scream hence ear plugs 24/7. arrrgggh. i just want this pain to be done and to have my life back already. :(

sorry to be sooo mopey and down, but it's beena rough few days. hope things are better with you all.
Shanna,
I am so sorry to hear you are having such a rough time with the new drug and I feel a sense of helplessness to know what to say. It just seems like there must be a better way. Please forgive me if this sounds off the wall. Do you read the *******.org forum? There was a lengthy thread a few weeks ago started by the mother of a very sick 15-year-old who had seen tremendous improvement as the result of an ozone tent they had constructed. I initially dismissed it as being a bit "out there," but there were so many responses to the post that I have filed it away in my mind as something to look into someday if the abx route doesn't work. I don't know what the answer is for you; it just doesn't seem right that every medication you take causes makes you feel so bad. I can't imagine the sense of helplessness your parents must be feeling right now watching you go through all this pain without being able to make you feel better. I am really concerned about you.

Our Monday is not starting our great either, although our problems pale in comparison to what you are going through. Sara started having stomach pains yesterday morning and they have been pretty constant since then. She is scheduled for a gall bladder scan at 1:45 today. She can't have anything to eat or drink before it so I am hoping she will sleep as long as possible this morning (it's 9:40 am EST and she's still asleep -- I'm hoping for noon). I hope this is not the end of Rocephin for her, and more importantly, I pray that there is not something seriously wrong with her gall bladder.

I'll keep you all posted.
Lesley
lesley...thank you for the encouragement and support. i definitely needed a hug as it were to help me through the day. am feeling a little stronger...very little, but it is a step in the right direction even though i am still in bed and hurting most of the time.

i have figured out one reason i am so sad this ast week...the leaves are falling and it's getting cooler, so fall is here and im not well. first i was hoping it was this spring, then this fall...all it is doing is making me sad, not helping. so i have decided to not worry now bout how long it takes for me to get well...i am putting it in gods hands and letting it go, that's where it should have been all along. i had moved my "date" to x-mas, but am throwing that out as well....i'll be better when i'm better, that's all i can do.

hope you are all fairing better...lesley how's sara handling school? and how was her scan and appt? has her stomach pain lessened? you are both in my paryers.
lesley ~ just checking in to see how sara is fairing with school, her stomach pain, and the ivs? oh and any word on your own test results? haven't heard from ya in a bit and hope she and you are alright. let us know when ya can.

teedee ~ how is the iv going? more progress yet? are you all through with the 1st round yet? any words on next step? fingers crossed for ya.

derek ~ how is the zithro workign for ya? hope you're ssing good things since the first round didn't do much accordig to your last post....hope to hear from ya soon.

gomez ~ any progress at your end? just checking. :)

lymegirl ~ did ya figure out a better way to adapt the iv to the shower? and have you seen anything positive yet with your iv? i know you said in your earlier post you hadn't seen much happen, hoping you've seen some herxing or improvements.

well i guess this was kind of a roll call gang...sorry if i left anyone out blame it on the brain fog cuz i treid to remember everyone....but no mater what i am just hoping some of you are seeing signs of good things, am excited to hear when they happen, and keeping you all in my prayers.

shanna
Hi Shanna,
Thanks for checking in with everyone. I've been wondering how everyone is doing as well. How are you? Great news on your disability insurance.

Sara's feeling better, although still complaining about her stomach hurting. I can't remember what I posted last, but her gall bladder scan was normal. Still, the doctor didn't want to take any chances given that the pain was in her gall bladder area so he switched her to Claforan. Now, we're trying to figure out how to give it every 8 hours and make sure she's getting enough sleep. (I'd be interested in hearing from anyone else who's taken Claforan in terms of how much leeway you thought you had with dosing schedule.) It's going to have an impact on activities, especially any after school activities.

Hope the other PICC-line folks check in as well. Take care,
Lesley
hi lesley....i'm alive that's about all i can say. have had pretty bad herxes this last week since starting the primaxin, and my heart is really acting up plus my neuro stuff has gone haywire. so i am on a break from the meds for a day or 2 to give my body time to rest and cleanse before i go back on.

but i am very glad to hear that sara's doing ok and her scan was normal. i'm sure you were both worried. hopefully the switch to a new med can help with some of the pain. i can definitely relate with her 8 hour dosing schedule, that's how ften i have to take my primaxin. although i can't tolerate it that often yet, i am able to take it 2 x day now. i tried for the 1st 2 days to do 3 times a day and was just in too much pain to continue. but to my beleif my nurse asked me to take it at 7 am, 3 pm, and 10 pm...and that way there's not much distance, only an hour from 6am to 7am between early morning dose and my late night one. i think the general idea is to keep a steady level dose in the body at all times, so the more evenly spaced the better i think. either way though it's a challenge to fit them all in. but i do hope some of this helps you out.

tell sara i pray for her often and think she's such a trooper to be able to handle school depsite her lyme. go sara! i know how hard it is first hand to do that and she is very lucky to have such a great mom in you to get her through this. :)

take care gang...
shanna
Thanks for the kind words Romans. I do feel like I am whining but hey that is why I am here. I can whine to all of you because we all have this mess in our lives. I just really want you all to know that as bad as it may get I will never be suicidal. All I need is to get outdoors and I am happy. I know it sounds corny but it is true.

The other day I flipped over a log and found a foot long tiger salamander under it. I swear it was like taking a pain pill. However the next day I suffered a little more due to the mile long walk and flipping logs.
Kim...I'm sorry to hear babut how hard your past few weeks have been for you. It's not easy dealing with iv treatments when we're soo chronically sick. I can tell you that I get very weak, feverish, and am definitely herxing wihtin minutes of taking my iv's every single day. SO I would wager to bet that you were herxing frfom your iv meds as well. I sure hope you can get back on your iv soon, I'm sure it was very frustrating to have to quit when you were seein some small changes. I can sympathesize with you abou tthat.

As for me folks...I am off of my primaxin for a week per dr. c's orders. I was herxing so badly this weekend that i was in the er for the pain and my heart problems. I think I would just check myself into teh hospital if I thought they culd do anythign for me other than put me in a loud, bright room where I would just wanna scream anwyaay. I hate being this sick. The past few days have been really rough, in bed in tears in pain....it feels like i have about 100 little terriers chewing at my bones and joints instead of their chew toys...sigh...but one day at a time and today is a little brighter i guess.

Hope you are all ok. You're all in my prayers. :)
Hi Shanna and the rest of the PICC line people,
I am so sorry that you have had another very challenging week and I pray that this week will bring some glimmer of hope and improvement for you.

Sara just finished her 6th week of IV treatment (2nd week on Claforan) and seems to be showing definite signs of improvement (although I'm almost afraid to commit that to writing for fear it will disappear). She was in school all five days, participated in something afterschool everyday, and didn't seem to experience much payback for her extra activity. She even won a small part in the fall musical, one of the few freshman to do so. A good week for her indeed!

Yesterday, though, she came down with a bad sore throat and stuffy nose. Seems like it's probably a cold or fall allergies (I'm having sinus pain which supports the fall allergy theory). She told me many times today how lousy she feels. But as she danced around the kitchen tonight, I said, "I know you feel bad today, but as I look at you right now, this "bad" is nothing like the 'bad' days you used to have." She agreed, all except for her visual disturbances, which she says have been worse than ever.

Meanwhile, I'm still waiting for my Western Blot results. My doctor was out of town last week. I can just imagine them misfiled or sitting in a fax machine somewhere. But the Lyme Dot Assay on my urine was negative on all three samples. Good news, I guess, except if all tests are negative, it will leave me wondering whether and how to pursue the memory and cognitive declines I know I am experiencing. I certainly don't want to have Lyme, but that would be better than finding out I have early Alzheimer's. (I realize those aren't the only alternatives!)

Shana, I feel silly even complaining about my memory next to what you have to endure each day. I truly hope there are some signs of improvement for you this week and thank you for always checking in on Sara. I know you're rooting for her!

Lesley
Hi everyone. I was going to get to work on filling out reams of insurance paperwork until I read the posts and realize I have to touch base with all of you as promised.

First Maureen, as for my leg/foot problems, when I was in Cal. two and a half weeks ago, my ankle swelled and it came and went for a few days but I wasn't concerned until my older sister saw it and insisted I see my local doc about it. She thought it was neuropathy (common with Lyme and MS sufferers I found out) so I saw the doc and she said since there was no pain involved it probably wasn't neuropathy and since I had an appt. the next day to see an orthotic specialist about my curling toes on the same foot, maybe it was all related to my difficult walking gait and he could give me an answer. So I saw him yesterday and he had great ideas for getting those toes straightened out, thus improving my gait and giving me better ability to exercise and stretch to get my leg stronger. I do have to call Dr. Harris and will let him in on all of this. I also want to discuss the negative test results for co-infections and ask if he thinks I might need to go back on the Artemisinin. It's all just so mind-boggling and our weather, which has been glorious, is supposed to change to rain and I want to get as much outside time as I can until it starts.

Marsha, I hope things are getting much better for you! Nobody deserves that awful "D" along with all the other stuff we have to endure.

Shanna, I'm SO sorry to hear about your latest battle with the outbreaks. We're all keeping you in our prayers and want to hear about any progress.

My fuzzy brain wants to rest so I'm going to take a break outside for a while. Hope we hear something from Derek, Gomez and Lymegirl and anyone else I've overlooked but certainly not forgotten, to find out how they're doing.

Have a good and peaceful day.

Tronni
Hi PICC line people,
It's been an up and down week for us. Last week-end, Sara seemed to be coming down with a cold. By Monday, it seemed clearly to be a herx with terrible head and chest pain. She seemed pretty good shape by Thurs night. Unfortunately, she missed all the play practices last week :( Now this week-end, she seems to be developing an allergic reaction to the Claforan. Last three doses, she's complained of chest pain, difficulty breathing, tickle in her throat, and tearing eyes. It's gotten worse each time, which is why it's taken up 3 times to finally "get it." Home health nurse said to stop the IVs and call the doctor first thing in the morning. So, I'll keep you posted on that.

My Western Blot IgM was negative, but the IgG was indeterminate. According to the 2005 Burrascano guidelines, however, it would be positive -- because I had positives on 41 and 18. I had lots of indeterminants on other bands. I have an appt on Nov 20 with a local LLMD. I also made at appt at the Lyme Evaluation program at Columbia Univ in December for neuropsych testing. I don't know if I should try (or even can) do anything before that. My symptoms are primarily neurological (memory, cognitive, restless legs, insomnia). I have some joint pain, especially knees. But mostly I feel pretty good most of the time, so it's hard to shift attention away from Sara to myself.

Shana and Marsha, I hope this week brings some improvement and hope for both of you. To Tee Dee and everyone else, hope you're doing well and look forward to hearing from you all sometime soon.

Lesley
Hey,
How bad would it be if I started an infusion without using alcohol wipe? I just injected saline, pre-abx, without first wiping. What can I say my fog has been 8-9 for last seven days.

I think I herxing at the moment, the last seven days have been hell. All of my symptoms have increased, especially the muscle pain in legs. It feels like the muscle is being twisted, like ringing out a wet towel.

I hope you are all doing good. Sorry I dont post much here anymore. It seems like every day there are 5 additional post and it makes me more confused and fatigued just to think what I have missed. However, I am a man and only talk when need be!

Does anyone know how long we have to infuse before we start to feel something positive?

Derek
Hi guys and girls...ladies and germs....man i'm silly this morning, don't know why considering the news i have but oh well a girls got to laugh right? right. :)

anyway here's my news: my llmd authorizeed an extension of my primaxin iv for another 4 weeks added onto this round of 4 weeks which i am nearing the end of. and then my ins called yesterday, and due to the fact that my llmd dr c told me to go off my iv meds for a few days here and there due to severe herxing and pain over the course of my 2 past rounds of iv, my ins is no longer willing to pay for my meds. they say lymes treatment is ineffective that way. what!!!! :o

so i am waiting for a game of phone tag to finish up between my doctors and my ins, in the hopes that they convince them that it is medically effective to treat a lyme's patient in this manner and that people do get well this way. i am so mad that ins companies try to tell doctors how to treat patients. did they go to school for 8 years and start their own clinic and research lymes..no...so why should they tell people how to be taken care of. it's plain stupid. so now i wait...in the meantime i have to drive into town to my doctor to have them change my hickman dressing b/c they have also stopped paying for my home nurse visits. so this all plain sucks. it's so frustrating as after 3 months of iv treatments i am finally beginning to see more and more positive changes, all be it small but still great in the scheme of things. now this. i guess i will just keep plugging on and pray that god will resolve this all and i'll continue to heal when this all settles down. so if you guys can, please keep me in my prayers as there's no way at all that i can continue iv w/o ins coverage...it's ridiculous how much this stuff costs. i can't imagiane going back to orals right now...so now i wait and see what the next days will bring....an end of my iv and my strides at improvement or a repreive and a contiuation of my healing....fingers crossed yall. :)

Lymegirl ~ hope we'll still see you on the board and soon be posting good success stories. i wish you the best of luck and fast healing.

Marsha you will be in my prayers....i sure hope you will be able to have some fun at the beach despite the situations. I will be praying that the extra fluids and milk thistle will lower your liver enzymes and hopefully resolve the C diff infection. Keep us posted when you can.

Derek...just wanted to say that I've also forgotten the alchol swabs a time or two and i'm still here, so like maureen said "what's done is done" try to not to worry. i think if we did that regularly it would spell trouble but once i doin't think is going to kill us. i actually forgot to flush out my iv for 3 days when i had to be off of my meds. talk about a panic, i thought that it would be all closed up. but luckily it wasn't. we've all been there a time before and been smarter afterwards...now i lay out all my stuff just like maureen said she ended up doing. seems to be a great way to overcome the fog.


alright yall...off to eat some oatmeal for breakfast...enjoy the weekend if you can...fall is here in MN and the leaves changing are just plain gorgeous.

shanna
Hi all
well i have been on the CLAFORAN for 3 days now and have felt ok so i don't know if it is doing anything. I am still hurting like usual and confused and i had a seizure this afternoon. so i don't know if you would consider the seizxure a little herx or not since i was "due" for one or not. I guess i just have lots of questions but not many answers.
Romans/shanna
I am so sorry about your ins. i know what you are going thru and am crying for you. We have had to cut cost so much wth this sickness because of ins and no money and it has hurt me so much more. I am praying that the ins. people will come around for you and that you can get a break from the herx constantly.
gyyl,
I would recommend the PICC because it would be a pain to have to go to teh docs every day feeling as bad as we do ( even feeling good it would stink :p ) Just be careful to keep it dry and clean. I had two and they both became infected within 2 weeks of being put in. this was last year and i wasn't on abx at the time because we didn't know i had lymes. I was being treated with the natural thing called "glutathione". I am not sure if they are prone to infection with abx or not, but be careful.
I still think the PORT a CATH is the best. Mine is on the left side right above my heart. It was just put in on Friday and still hurts like @@--**9(( :D :) :jester: :eek: oh well !! it will get better. it is cool that i don't have to be poked anymore for bloodwork.
Maureen,
I will talk to you at the main board...
Talk at you all later,
thanks, maureen, tronni, shanna, brend, for your advice. I'm still undecided. lol. My worry about exercising is that the sweat will wet the picc line. I guess it's very bad to wet it because of infections, but if I'm sweating I don't see how that can be avoided. And I tend to sweat a lot lol.

You think sweat could be a problem? If I get the thing in and i find i can't really workout that will be bad, because i think the exercise helps more than anything. I don't have much fatigue, just a lot of pain and i think getting the endorphines flowing helps cut the pain. I also wonder if the increased blood pressure could screw up the tube somehow.

You guys all have such positive attitudes and that's great! I think that's the most important thing. Sometimes i can get very negative and that doesn't help. Take care everyone. :)
Hello All,
I am new at posting on the board, but have been reading here for a while. I have found it to be very useful. I finally decided to figure out how to join and post and here I am ...finallly....

A little history... I have been sick for 4 years now... finally diagnosed with Lymes after many other diagnosises.
I am posting here beacause I have had a PICC line for almost 5 months. I have had some very good days since starting on the Rocephin, but still feeling like crap the majority of the time. I have also just started minocyline (200 mg. daily) again. (did this before the Picc).
My main symptoms are joint pain (mostly in hips and knees and hands), headaches and major fatigue.

I am wondering if anyone is on Diflucan. I have seen some interesting info. on this and read that some with Chronic Lyme have had some amazing results. My doc has mentioned trying it later on ....

:wave: Thanks, TamKS
Maureen,
Thanks for the warm welcome! :) It seems like a lot of very nice people are here on the board. It is nice to have each others support. I certainly know that my life could be much worse. I have many, many blessings. It is so nice to know that those here know exactly what I am going through. It is impossible for those around me to understand how I feel. It is hard to describe just hurting all over.

It is great to compare stories and see what works for others. I haven't tried detox, but should probable look into that. I have been seeing a chiropractor for about 9 months and he does acupuncture also. I think it helps, especially with the headaches. I have gone down on my duragesic patch (pain meds.) since i started seeing him. Although my pattern has been that I feel better in the warmer months and worse in the colder months. I guess this winter will be a good test.

I love hearing the sucess stories! Was she doing anything other than the Rocephin? How long had she been ill? My doc has told me of others who had been sick for many years and are now better. I think it is just going to be a very long journey for all of us, but eventually we will get better.

It is hard to imagine not being sick and having a normal life. When I have a good day I get so excited because it reminds me of how much I used to get done in a day. Now the laundry just piles up right along with the dishes. I have three daughters and a hubby who make loads and loads of dirty laundry!
What is sad is that my girls don't really remember a time when I wasn't sick. They were 4, 4, and 2 when I first got sick. I still manage (somehow) to do a lot of stuff with them and I try not to let them know how badly I am hurting, but I would love to be able to do those really active things with them that I just can't do right now.

Thanks again for the warm welcome!
TamKC
Dear TamKS,

I don't know what else she was doing but if you key in her name at the top of the page you will be able to find some of her posts. I want to say that she occasionally posts but it seems like a long time since we've heard from her. I know we all promise to continue posting so we can help the newbies even when we are healed but I am sure there are times you just want to put it behind you and only visit periodically. Look under samaya and see if you can find anything. I am probably the least computer literate on here so if that doesn't work let us know and somebody will point you in the right direction.

I know what you mean about the chores. I used to keep such a clean house you could eat off my floors but now you can probably find enough food on them to eat. :D My mobility is severely impaired but I try to keep up with the cooking and laundry and that's about it. My husband picked up my meds tonight from the pharmacy that the new doctor ordered and it looks like I will be in for quite a ride for the next few weeks. I guess no pain no gain. I won't mind and will get through it if it means recovery. I am sure you feel the same way.

You said your kids are 4,4,& 2, do you have twins? My husband is a twin and we have tons of twins in both sides of the family. The every other generation doesn't hold true for us. My daughter just had a baby and we kidded her that she might have twins. She didn't think that was funny. Some day you will play with them and they will forget how sick you were. You just have to look forward to that day. Have a great weekend.

Maureen
Hi ,
Shanna, it's so nice to hear that you're adjusting well to the new oral meds and that you're feeling better. I was devastated to read that insurance stopped coverage of your IVs. It is so encouraging that the IVs might have lowered your bacterial load to the point where you can tolerate your new meds. Tronni, how exciting to hear about your walk across the parking lot. I hope it is the first of many!

Sara is hanging in there. I think we're finishing week 11 of IVs, the last 3 have been on IV-Zith. She started Mepron on Sunday so complained a lot about fatigue, headache, and tinnitis early in the week. But yesterday she seemed to bounce back to her pre-Mepron state. Overall, she seems much better in terms of energy level, dizziness, heart palpitations, but so far the 11 weeks of Lyme treatment has done nothing to improve her visual and auditory disturbances or her neck and back pain. Today I received the Artemisinim I ordered. Not sure when we'll add that.

We are taking her to New Haven to see Dr. J in Dec. Also, she's going to have a SPECT scan at Columbia. And her local LLMD wants her to see an immunologist in NY because she tested deficient on 3 of 4 immune factors. This is something I don't know much about.

She's still managing to go to school most every day and for the past several weeks has been staying after school several hours for play practice. The production opens in a week.

My WB IgM came back from Igenex as indeterminate, but would be a positive based on Dr. B's guidelines. I have an appt in Nov. to see Sara's LLMD. Meanwhile I had a suspicious mammogram so for now I need to focus on that. Another mammogram on the 8th. Hopefully, it will be nothing.

Take care everyone,
Lesley
:wave: Its time for a picc update. Any good reports. I really need some. Anybody!!

Today is the day. Get picc put back in this afternoon. :eek: Then restart my treatments.

Also, the last time I saw Dr Jemsek, he gave me rx liquid morphine for pain. I have never been able to take pain med without having a major chest spasm attach that last hours. Tues nite, tried the morphine. MISTAKE It did cause a really bad attack. The strange thing is that when I have these, my heart is not affected directly but nitroglyricin helps. I took nitro tues night. It would stop the pain completely for about 20 mins then it would come back. In all, I took 5 nitro over a period of about 4 hrs. Has anyone else experienced this. The pain is in the middle of the breast area and goes through to the back with alot of nausea and sweating . Very intense, not burning or stabbing just major there. Didnt sleep at all Tues nite.

prayers to all Marsha
Marsha...you will definitely be in my prayers. Let us know how the new picc line goes, hopefully easily and as painlessly as possible. I'm so sorry to hear how rough the past few days have been. It's hard enough to be sick, but to have such attacks from the pain medicince seems almost cruel. I can remember times when I thought my heart would pop out of my chest and go to the er and they would see nothing wrong and nothing they gave me would help the pain, so my heart goes out to you. I don't think I ever had quite the experiences you are describing but keep the hope and know that it won't last forever.

I wish I had some magical pill or suggestion that would ease all that pain, but the one good thing I can do is share my positives I'm seeing. Mabye that will encourage you to know that as bad as I was just 2 months ago I am finally seeming to be on the mend...knock on wood. :) I am finally out of bed more often than in the bed! YAY! I can think more clearly, have less episodes of brain fog. I still stutter and forget but it's not nearly as often so that is a huge success in my eyes. I am finally feeling less tired every day so that means I'm able to do a little bit of exercise and do my physical therapy. Also a big YAY! My pain level is now manageable and I don't have to take 4 or 5 vicodin to just get through the day, now I maybe take 2 or 3 on a rough day. A big YAY as well as I was so worried about being addicted to it after being on it so heavily for 5 months. And to top all of this off next week I get to go back to Madison for a week or so long visit. Double YAY!! I can't imagine how good it will feel to be home after being gone for 4 months! None of this would have been possible even last month, the lymes is finally in retreat so Marsha don't lose hope. Keep fighting. It's so hard to do when you're hurting so bad constantly and not seeing any improvements but I truly believe that God rewards faith and perserverance in the face of hardships...I think I'm living proof of this, as are so many others who are finally getting better after being so ill for so darn long. I think on my darkest days the two things that got me through minute by minute was remembering how hard it was for my brother as he slowly died from non-hodgkins lymphoma...those images and struggles always reminded me that no matter how hard it was for me, I had a cure and would some day be well. Also my faith in God that he would never give me more than i could handle. So for you Marsha stay positive as much as you can and know that you're in my prayers. Please let us know how things go for you this week. :)

Shanna
Shanna & Tronni
A big thanks to both of you. I am part of the picc gang again. It was definitely a rough day. After picc placement, went to jemseks office. Had to wait there an hour. After I went up tothe desk they called me back next. One look at me, got me a drink, offer of crackers, double dose of phergan for the severe nausea I was having. I had to wait until I felt better before I could start a treatment. I was started on primaxin 2xd. and one by mouth that helps the absorption of primaxin. I am to be pulsed M W & F. She said we would have to go slow. She fears with the way things have progressed that I may be in some very bad herxes. She told me if I felt like I just could not do a treatment because of all the pain, don't call her just skip that day. I am to only take what my body will take. If all goes well the first week, I add flagyl the 2 wk pulsed the same days.

I questioned regarding adding milk thistle, shiatake mushroom, green or herbal tea. She said not knowing how my system would handle any of these, she just thought I should not take the chance. Yet....

I did not have a CD57 test as she says jemsek says that they give you very little info. He doesn't see the benefit.

We discussed the chest spasm attack I had this week. It is one of the unexplainable ones. Since Nitro stopped it every time she have me a rx to get filled. She is putting me on Ambien12.5 (Like a extended relief)

Shanna, I know how difficult these last several months have been for you. It gives me hope to read your post and see the improvement. You are finnally getting there :bouncing: I am so glad for you. Just don't overdo, you know how we are if we think we feel better. Be careful Keep me posted on you improvements. God is in control. He is showing it with you and he will with me. All in his time.

Tronni, I understand the fatigue very well. Mine doesnt get any lower. No energy to do anything. Maybe my 4 1/2 yr old granddaughter will come clean my house. She would do a better job that her mother. I don't have the energy if my aches and pains would let me. Susan today told me that for the next several days I'm to do nothing but lay around. ??? That is ok with me. I am going to check in to the aloe master, do some research. I have the rest of the week & wkend to rest and enjoy. Any ideas.
Marsha
Hi Maureen...just wanted to say as far as the Neuro Anti-Tox formula it's hard to say if it's the combo of it plus the Wobenzyme or if I would see the same results without the Wobenzyme. I don't have the heart to stop one of them and see which makes the difference, I am just so excited that finally something was helping I now don't care how many pills I take a day...if it works keep on keeping on. :)

Anyway to answer your question about how I think it's helped me, I guess there's a lot of areas that have improved for me since starting them. Perhaps too b/c the lymes buggers are less in number, but who knows. But overall I have noticed a great decrease in my level of pain, sometimes I actually forget to take my vicodin b/c I'm not in tons of pain any longer. I can't even remember anytime in the last 7 months where I haven't had a level of pain that made me head for my meds every 4 or 5 hours! So this is such a huge plus for me. Also my fatigue is so much better. I only starting getting really tired now around 1 or 2 in the afternoon, instead of feeling totally wiped the second I wake up! The biggest of all for me though is my ability to start writing again and spelling correctly, and just plain seeming to think more clearly. I still have rough moments don't get me wrong, but for example now when I type it's not as difficult for me to remember where puncuation goes, nor do i have to conentrate nearly so much on capitalizing or spacing or how to spell or how to make my sentences make sense. It just seems like I can think again like the old me. So maybe that's all just a result from the combo of treatment and detox through the formula and the wobenzyme. All I know is that week by week I am feeling more and more like the old me and I'm estatic!!! :bouncing:

I guess this just goes to show that God has a bigger plan than we can ever know...just to think that 4 weeks ago I was so scared b/c the insurance stopped my IV treatment and now even without the IV I am making so much progress. He always knows what's best....just gotta have faith.

Anyway hope that answered your question Maureen. Let me know if you get the formula and what you see as far as improvements. I know he has various formulas targeted for different areas of the body systems depending on your symptoms, maybe there is one that one would help to specifically target your mobility issues? Or maybe just the general one that I ordered would help you with that as well. Either way I sure would give it a try, and for the I think 30 bucks a huge bottle cost me it's been well worth it.

Hope you have a nice weekend.

Shanna
Thanks for the words of encouragement from all of you. Did get my picc line yesterday. Rough day and nite. Nausea is such a big problems for me and yesterday brought it on big time. They had to give me phenegran before the treatment. Told me to wait till Mon and do treatments (primaxin) Mon Wed & Fri 2xday. Another one I have to take (pill) that will help the primaxin work better.

Any of you ever heard of the pain lolipop. She mentioned it yesterday and siad it might work for me. Every pain med I have ever taken caused such intense chest spasms. I took morphine Tuesday night and then had to take nitro 5x during the night to stop spasms. Im so afraid of any pain med. I may have to consider the pain lolipop, just at this time am so afraid of it.

Tronni, I think it was you that mentioned a book. I have one that I have been trying to read for the past 2 wks. Cant seem to stay focused. I have crocheted, but even that right now is a cant do. No energy, to much pain. I am so tired. I told dr that I feel for the first time in 17 yrs lyme is winning the battle. Ive got to win the war.
Pray for me.

Shanna, your encouragement means alot. I see how far youve come from couple months ago. It gives me hope.

Brain fog. Got to stop. Love and prayers to all. Marsha
Shanna,,
You are such a encourangement to me! Thank you for your uplifting words. i just read the picc line posts from about pg 37 on and I cant believe how well you are starting to do. Exactly what you wrote about the pain meds every 4-5 hrs needing them is hoe I feel if not sooner, and toknow that you are starting to not feel that way excites me so much :bouncing: :D
I am hoping that after the IV if i go on orals that i contine to do as well as you are foing.
I hope your week at home is fabulous!!!! :cool:

Marsha,
I am so sorr y that you are feeling like the nasty old lymes is winning the battle. :nono: . Please dont let it win, I know that you are stronger than the lyme, because you can write to all of us even when you feel bad. I know how much that takes out of us to write when we feel so sick and you are strong to be able to do this, so please keep fighting the battle . YOU CAN DO IT. YOU CAN WIN!!! :angel: I will be praying for you even more.

Kim,
I now can understand what you went thry with your broken writst. I was sleeping on our couch after one of my IV treatments which makes me so drowsy and I feel of and smacked my leg somehting hard. I didn't break anything that they can see but I have to g for a bone scan Monday morning of my entire right leg. Oh JOY! :rolleyes: I already have bad mobility problems and now this cmoes up. What is a person to do. LOL!

To everyone else,

Hope this finds you all doing well and that you have a good day! :D
Update: Went back to Jemsek Clinic yesterday.

Picc site has been giving me problems, one blister that was just healing and area under bandage was hurting. They removed the dressing and cleaned it and put different dressing on it this time. Within few minutes it had started forming new blisters under the clear dressing. Alot of pain. They had to remove the dressing, sterile bathe the site to clean. They said the alcohol wand they used to clean it with and they type dressing were causing the problem. The area had gotten so bad they wrapped it in sterile gauze, no tape. It has really been hurting.

Hip pain was so bad, blood pressure up, so much nausea. They gave me phengran injection. The provider said blood pressure will probably be up alot. I'm on blood pressure meds.

Did start clinda. Provider said to go slow. I'm set to infuse M - W - F twice a day but she told me to infuse based on how I was herxing. She doubted I would be able to do more an a couple times a week. Holding off on the mepron for awhile.

She gave me RX for diamox250 that will reduce the fluid in brain to try to keep the headaches from getting so bad. Rx for potassium because I will lose alot with the diamox pills. I am to continue Primaxin with the Clindamycin. I am going to wait until tomorrow to start the combo infuse. I feel rough today. :eek:

Derek, if you read this. Tell them about your blisters. Get them to use Bettadine. They told me that is the best for sensitive skin.

Tronnie, Maureen, Brennd & Kim. (Shanna too) When is the tea party, neighbors? I need a friendly shoulder to cry on.

Prayers to all. Marsha
[QUOTE=Pearlscale]Update: Went back to Jemsek Clinic yesterday.

Picc site has been giving me problems, one blister that was just healing and area under bandage was hurting. They removed the dressing and cleaned it and put different dressing on it this time. Within few minutes it had started forming new blisters under the clear dressing. Alot of pain. They had to remove the dressing, sterile bathe the site to clean. They said the alcohol wand they used to clean it with and they type dressing were causing the problem. The area had gotten so bad they wrapped it in sterile gauze, no tape. It has really been hurting.

Hip pain was so bad, blood pressure up, so much nausea. They gave me phengran injection. The provider said blood pressure will probably be up alot. I'm on blood pressure meds.

Did start clinda. Provider said to go slow. I'm set to infuse M - W - F twice a day but she told me to infuse based on how I was herxing. She doubted I would be able to do more an a couple times a week. Holding off on the mepron for awhile.

She gave me RX for diamox250 that will reduce the fluid in brain to try to keep the headaches from getting so bad. Rx for potassium because I will lose alot with the diamox pills. I am to continue Primaxin with the Clindamycin. I am going to wait until tomorrow to start the combo infuse. I feel rough today. :eek:

Derek, if you read this. Tell them about your blisters. Get them to use Bettadine. They told me that is the best for sensitive skin.

Tronnie, Maureen, Brennd & Kim. (Shanna too) When is the tea party, neighbors? I need a friendly shoulder to cry on.

Prayers to all. Marsha[/QUOTE]

Hey Pearl,
I noticed a while back that the betidine was better, it is the adhesive that tears me up. I have not used a stat lock for three weeks and the line has already come out a little more than a centimeter.

Last week my nurse changed it and put some of that tape on my skin, later that night it was itching so bad I felt like ripping my arm off. At about 12:30 that night I changed the bandage myself and as I was cleaning around the line it came out a little. I did not notice it till I put the sorbaview down. I figured when my nurse came back I could get her to push it back in. She was here today and told me it does not push back in and if it comes out much more they will have to pull it. I look forward to that day!

So has anyone gotten better? I feel no differant than I did the day they stuck that line in me. Those negitive thoughts are starting to creep back, you know, do I really have lyme or will I ever work again. I guess it has been 4 months going on 5 that I got the picc and if I am not mistaken we all got them at about the same time. I hope someone has positive results, they did tell me it was a 70% chance I would feel better after 6 months of IV. That is a good number so someone here has to be feeling better.

Derek
Tronni
I am so sorry about the dealth in the family. Try to take it easy. Hope your bladder infection is better. I'ts hard to stay positive when herxing severely. But remember you are killing them, you are winning the war. Youre a step ahead of me on the christmas cards. I havn't even purchases mine yet. I ususally send about 150. I don't know what I'll do this year. Tronni you mentioned that your family had went on an encouragement tangent. Last
few weeks I've turned into a recluse. Don't want to talk on phone. Don't want to leave the house...I have been herxing severely.pain in my feet mostly heels. pins and needles. ringging in ears worse. overall more achey. headache, blurred eyes, face numb. digestion problems probably from the meds. I'm on Primixan IV 12 hrs apart. 2x day and also clindamyacin iv 12 hr apart 2 x per day

Maureen:
With the brain fog its a wonder I still manage to give my meds correctly. I am pulsing m w f and will stop if the herx gets unbearable I know you are all glad that Brent is home for Christmas. How is Ronnie doing.

Derek
Hope things are slowly improving for you. I know you have been discouraged with the service for maintaining the picc line. Do you still have It.

Shanna;
You are our inspiration. We need good news. Share all you can. Try to remember your limitations. We feel a little better and think we can tackle the world.

Kim
Your Dr told you to have patience as change will be slow in coming. I wonder if that same patient was the daughter of the physician what a difference it would make.

I have been reading the post but with the aches and pains and brain fog, I just wasn't good company. Getting thoughts from brain to paper is not easy today. I do want you to know I read the new post even when Im to tired to post.

Prayers to all who read thisl..............................Marsha :angel:
Hi all....Just wanted to drop in on the picc line and say hi. I am finally back at my parents, my mom drove me home from wi on monday. I had a 2 week "vacation" from my "being sick" cocoon and now am back, am sad but relieved. It was truly exhausting trying to live on my own again. Even with not cooking or cleaning or driving, only just the daily lounging around with my boyfriend, and the 3 laid back trips out to dinner or a movie that I took with friends was just plain tough and draining. The conversation and thinking and sitting up and the noise/light and just other basics took such a horrific toll. But I would gladly do it over again to get that nice emotional/mental break. All in all though I'm glad to be home so now I can recoopercate and recharge. It's pretty scary to me that the bare mininimum that I did while down in Madison ran me down so much. By the time I left I was hurting pretty badly. And the 5 hour car ride home was pure hell again...so sick and in pain. Guess it just goes to show that no matter how much I have improved over the last 2 months I am still a very sick puppy and have a very long way to go. :( But I'm getting better every day, or at least that's what I try to believe.

Also I've been switched on my meds too, I'm now on day 7 of my first 10 day round of Clindamycin and Quinine. I think that's part of the reason I felt so awful down in Madison too, that these new meds are killing some new spyros and I'm feeling the effects. It's good news to know it's working and fighting stuff, but it's crappy to be feeling so icky again. To try to combat this I'm increasing my dose of Dr. J's Neuro Anti-Neuro Tox Formula in the hopes that it will help keep me out of a severe herx cycle. We shall see. Anyway I guess it's like they say....one step forward, two steps back. But at least at that rate I'll get to where I wanna be, just a little slower than I'd like.

Anyway you guys, I just wanted to say hi and tell you that I made it home safe and sound and that I'm thinking of you all, wishing you the best.

Shanna
Hi Marsha,

I think you got me mixed up with one of the others (Maureen maybe?) about the Christmas cards. I didn't send cards last year but emailed as many people as I could to tell them we wished them a merry Christmas but that I just wasn't feeling up to doing cards. I didn't even do that this year.

I understand about the brain fog and get some encouragement that those of us in right around the same phase of this battle are so similar. I woke up real dizzy this morning with a terrible upset stomach and know a lot of that is due to the stress that my sister's going through. My other sister called and told me to try to put all of that in a place in my head that knows I can't do much other than tell them I care. Easier said than done.

I'm going back to bed to read for a while and do some hard-core praying. That seems to be the one thing that really does calm me and praying for all of you gives me a feeling of taking the focus off myself and putting it on others who I really do care about.

Please know that I especially pray that the pain some of you have gets better quickly. I don't have the aches & pains a lot of you have, mine are all pretty much stomach-related and don't usually bother me too much.

Big hugs to all of you!

:wave: Tronni
Maureen ~ think I began noticing some changes after about a week or a week and a half of being on the wobenzye and neuro antitox formula. think it kind of snuck up on me though. one day i was feeling crappy and then a few days went by and I was like "what? i haven't taken my pain meds in 8 hours? you've got to be kidding me!!!" ....it's kind of hard to explain. b/c it's not all just about the pain, i think i finally felt like i was a little more alive, had a little more energy and my body just seemed to be better able to handle my symptoms. don't know if that makes senses. but keep me posted on how things go with you and the new stuff from dr. j. hope you'll be seeing some improvements too. i'm on just the basic formula b/c i have major stuff in all the areas and couldn't bring myself to just focus on one area at a time. so thought that just attacking it globally all the way around would be a good thing to try out. so far so good. now if i can just get back on top of this clinda/quinine combo with this formula it would be great. glad to hear that your new med combo is doing some stirring up...sorry that you'll be perhaps herxing at x-mas that sounds like not alot of fun....but at least a step in the right direction of getting healthy again.

shanna
Just wanted to let you know I'm still hanging (by a thin thread, but it is holding) Its been a rough week. And I am just starting week 3. So many starts and stops its took me 10 weeks to get to this point. You've all been through this, so you understand. I'm having alot of vision problems, ringing, headaches, face and arm pins and needles, hip joint pain and just this last week my feet have been going pins and needles numb. I'm so tired of this.

Back to Dr today. They are going to try meds M-T & T-F clinda and primaxin. Having to watch the liver functions and the C difficle. Both of these were major problems back in October. I am taking milk thistle and hope it helps.

I have been keeping up with your posts just havn't felt like responding. You all are in my prayers.

Marsha
You're in mine as well Marsha. I hope that the new treatment regimen will help lessen some of the severity of your symptoms. I feel for you. We are all troopers to get through the rough spots and I promise you that you will get through this at some point...I just pray that you get a break from the pain soon, it sounds like you desperately need one. I just have one thing to ask you. What are you doing for detox? Besides the milk thistle? Anything? I know that I was hurting as bad as you a month or so ago and started taking Wobenzyme and an Anti Neurotox Formula and I can say that that has helped so much. Maybe that might be something you could ask your doc about or try out if you're not already doing something similar? Just a thought. Hang in there Marsha. Hugs.

Shanna
Hey ladies,
It has been a while but I am here to update. On Dec. 20 I had the picc line pulled. The line had come out about 2 cm because I could not put a stat lock on. The last month was hell, itching and oozing due to the stat lock, clear dressing and chlora-prep. They changed dressing to sorba-view and c-prep was changed to betadine with no stat lock. It was much better after that but because line had come out 2 cm they wanted chest x-ray to see placement. I felt like since it had been in for 6 months and would be coming out soon anyway I would get it pulled. Before they pulled it I got my first glutathione treatment. It did not work for me, at all, as a matter of fact the next three nights I slept 9.5 hours a night. I have not slept that much since I was a child and it was suppose to give me energy.

I took a holiday from 20-27 . On the 23 I started getting real achy and more dizzy/spaced. My sleep went from 9.5 hours a night to 7 bad hours of sleep due to leg pain. I am still dealing with this now.

I started orals on 27. The orals I am on are augmentin and minocin M-F with flagyl every other week.

So after 8 months of abx treatment the only thing I have noticed is a huge decline in left fank pain and I am not as exsausted after doing simple things like sweeping floors, still very exsausted though.

My symptoms now are dizzyness, disconnected/fog, fatigue, buzzing, burning sensations, coldness, full ears, stuffy nose, muscle pain(very bad in legs), acid reflux and many visual problems. Pretty much the same.

So how have you all been doing? Has anyone here noticed improvement?

Derek





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