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Lyme Disease Message Board


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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 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. :)
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
: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
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
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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