I started my third week on the PICC Monday and am just feeling very blah. I have ran low grade fevers pretty much for months in the evenings it has been around 102. I feel blah and am very tired. I actually went to bed the other night at 8 which is unusual. I have not done this in months. I tossed and turned all night starting around midnight and then the kids had late school due to snow so I slept until 9.
Cannot sleep at night, wake up around 2 and just lay there for like an hour. I am always cold yet past couple of nights I have been waking up sweating (have not done this in past, even with fevers) and especially behind the knees.
I was feeling as though I was moving forward but then this happens and you start to think lyme is forever and it sucks!!
I guess I am going thru a depressed stage again because I just want to be normal again but I really do not know what normal is anymore. I really do not want this PICC and it is not so bad but it is a pain in the butt. I was trying to plan something nice for hubby and I but how sexy can you try and be with a ace bandage around your arm?
I am not even sure where I was going with any of this but I guess a question is did anyone else start feeling like this thru the picc treatment. I do not think it is a herx but not really sure. My nurse said everything looks good with PICC so do not think any infections there.
I am taking the IV rocephin, once a day. Then a combo on flagyl (3 times a day every other day) and zithro on the days I do not take the flagyl.
I ended up taking an ambien last night because the past two nighs I tossed and turned all night and was just tired the next day because of it. Got an ok sleep last night.
I have such a funny taste in my mouth and even have it when I am not on the flagly days. At first I was worried thrush may be starting but so far, lucky!! But it is aggravating me because everything is tasting funny. No sore throat though so sure it is not strep but glands are swolling.
I was just thinking a herx would be so much worse. I mean do not get me wrong, I do feel like extreme crap but am able to deal with it.
Hi fernee. It is good the herx is not unbearable. Are you infusing 2 grams of Rocephin?
The Flagyl may be causing the icky taste. Call your pharmacist and ask if it can cause it. I have read that some people coat it in olive oil before taking it. I don't know if they do this because it tastes bad when they take it or if it could help prevent the taste later. Maybe you can ask the pharmacist about this also.
Reinforcing Ticker's wisdom: I've cruised a couple of web boards regarding Flagyl and the bad taste in the mouth thing is a common complaint.
With regards to the fever, just a thought: have you been tested for babesiosis? Any dark urine prior to antibiotics? Dropping red blood count? Trunk pain?
Agreed: this IV is a pain in the butt. I go to sleep thinking I'm going to shift in my sleep and it'll catch and pull out under the sleeve-netting. And I don't even have some big hairy guy flopping around next to me to worry about. You ladies with lyme and husbands and kids are champions.
I'm on day 11 of IV. I'm calling my doc today to try to get him to prescribe me Flagyl, also.
Hang in there.
The LLMD did not test me for babesiosis but he did mention about a month and a half ago that he thought that I might have that co-infection also. In the beginning he thought just bartonella and lyme, who knows. But the fever has been a pretty much ongoing thing for weeks now just normally do not have the night sweats. Do have the pain, achy, etc. No dark urine though.
I have a big husband but am pretty lucky. I have the picc in my right arm and have always been a side sleeper. I will lay on the left side and a lot of times he will roll over to hold me but if my arm is a certain position to where he feels the arm wrap he rolls back the other way. But he is a very sound sleeper so I think it is great that he catches himself in the middle of it. luckily my three kids are between 8-16 so do not have little ones to worry about.
I can relate with my daughter now though. She is a diabetic and wears an insulin pump. She is forever getting her wire hung up on something and I have caught myself a couple of times where the extender may be hanging. She just laughs and me and states "now you know what I have to deal with". You know how that I told you so thing goes.
My body temp has been all over the map. In the beginning, I would feel like my face was burning up, but the thermometer read 96 or 97 degrees. Lyme likes a chilly body.
Then after I began treatment, I ran fevers for years. Even when I wasn't Herx'ing I ran fevers like 100, 100.5 ... just enough to make me feel crappy. Ha! Like Lyme is crappy enough
Periodically my fevers went over 101, but mostly stayed around 100.
I've been treated now for 3 yrs and I still run fevers, just not all the time.
It's a great feeling to be sitting there one day and suddenly realize "Hey, I'm not running a fever!"
Hang in there. Try to remember that Lyme hates high body temp, so whenever you're running a low grade fever, the little buggers are suffering.
I had a PICC line for 9 months. It can be a hassle but try to live with it. It delivers the drugs more directly to your body's tissues and kill the bacteria.
Peace and health to you'
I will try and remember that about the lyme hating high body temps. At least it is doing something.
I am glad to hear that you are doing so much better. After being on here for months I never realized how sick you were. I am so happy at least I never got to that point. I hope that you continue to get to be your old self again.
My husband had a PICC line for several months(not because of Lyme). I took care of giving him his IV antibiotic solutions every 8 hours/24/7. I understand how unattractive that area can be so this is what I did to make things look better. I went to the fabric store and bought some nice looking stretch fabrics and sewed him up some nice looking arm coverings in the shape of a tube about 6 inches long or so it covered the site...I understand not everyone can sew but you can accomplish the same thing by buying a nice pair of fancy looking ankle socks and cutting the feet out and slipping the tube part over your arm and site. It may be a little more romantic than just ace wrap or whatever. Of course this only works if the PICC line is in the arm somewhere. Some have PICC lines out of the neck area or upper abdominal area so that wouldn't work but you could tape a nice piece of fabric over those area. Good luck to you.
Thanks for the suggestions. I do not know if I wrote it already but tried the tube sock thing and was uncomfortable with the way it felt. I am getting use to it. When I have on a long sleeve shirt I do not cover it then I am fine. From things being wrapped around it, I tend to get itchy and just want to scratch all around it.
Yes I am doing the 2 grams of rocephin. I will call and ask the pharmacist. My tongue even feels very strange to the touch and brushing it makes it feel raw but I have to or else feel real nasty.
As stupid as it sounds I make it a point to kind of drop the flagyl in my throat and then swallow because I do not let it touch my tongue because of the taste of it. Been lucky so far.
I am sorry to hear you are not feeling well . The herxing that ticker mentioned starts around 3-4 weeks The flagyl will probably start helping the tongue feeling How often do you take it?
I aslo did the rocephin and it improved my lyme. I still am battling the co-infections babesis and bartenella I take the flaygyl every 72 hours . Mepron , zithromax and levaquin
Make sure to take a very good probiotic with your treatment. They are available online or through your local health food store This is very important
As far as feeling unattractive with the picc when being intimate is not unusual . I sometimes feel the same way but what is a person to do and I am sure your husband understands so don't worry it is there to get you so you can be your best later
Take care and keep us posted we all understand what you are going through and have been there .
Thanks for the kind words. I am sure things will get better. Hopefully sooner than later though. I am still feeling very run down and still running the daily temp. Went to bed last night and it was 101.7, this morning before work, it was 100.4. So it did go down not that much though. I am wondering if Dr. S. will want to continue the line since the daily fever issue has come up now on top of everything else.