I am considering getting a PICC line and was hoping those of you with a line could answer some of my questions. I have went and seen Dr.Weisbren in Millwaukee Wisc. After explaining to him my symptoms and everything I have been through he said that he is 100% sure it's Lymes. Although all the test I have had done including the Igenix lab they came up negative for Lymes. I know that you can have lymes without a positive diognoses but it would be nice to have something on paper before doing this Picc line. Dr Weisbren did put me on a series of Antibiotics but I had to discontinue them because of the side affects and how they were interfering with my job. This is a difficult decision for me because although I have most of the symptoms associated with Lyme and have had them for over 4 years, I am tired of dealing with the symptoms and at this time I would like to try something! How similar are the side effects between the IV antibiotics and the oral antibiotics? Do any of you have a PICC line that were diagnosed based on symptoms and not on positive tests? Are you feeling better? Did your insurance cover the cost? If not, how much $ do you have to pay? Thanks for taking the time to read I am very sick and I hope I can shed some light on this.
Hi Kyle! I am glad you will be getting the help you need.
Remember that you are fighting a serious infection. It is going to take time to recover, and it is normal to feel worse before feeling better.
Whether or not the IV meds are covered by your insurance depends on your policy. Maybe the doctor's office could call to find out what they would cover.
There is a great sleeve you can get for the PICC so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical.
My PCP actually recommended I get a PICC line just today, believe it or not! So, I am going in tomorrow to have it put in and will begin IV abx for a month. Never thought I'd be thrilled to have a needle/tube stuck in my arm for a month....
My MRI just came back "just about normal" except for enlarged ventricles in my brain (funny, I thought ventricles were in your heart only). So, I am seeing a neurologist soon too. I told my PCP I was almost hoping it (the MRI) would show something as I have felt so crappy for so long...So, he prescribed the PICC and said I should also see the neurologist.
Do you know what antibiotic you will be infusing? It is really easy to learn how to do it once you get the hang of it. The PICC covers are really great for the shower.
HI Ticker, Thanks for responding It sounds like we are going to be trying Rocephen. I am keeping my fingers crossed that this is going to work. I know there is a long road ahead but I'm keeping my head up. Thanks for the input on the shower wrap I will definitalty be buying one.
Do you know what antibiotic you will be infusing? It is really easy to learn how to do it once you get the hang of it. The PICC covers are really great for the shower.
Let us know how it goes okay?
Hey Ticker - thanks! I will have to check out the PICC cover. Hopefully the local medical supply place has them.
Got the PICC line installed yesterday and had my first dose of ceftriaxone. The nurse came by the house today and showed me how to do it. No big deal as long I I do everything in the right order. It is taking a bit of getting used to, having tubes sticking out of my arm. My one year old and 3 year old both try and grab at it - until I told them Daddy had a boo-boo there. Doesn't help that it is covered with what looks like a white fish net stocking - I feel like I'm playing "Madonna dress up"
I've had this for a year now; hopefully this will be the beginning of the end...
Andy
Please keep us updated on how your IV treatment is going. I am being tested for co-infections now. My doctor indicated that IV is going to be my next treatment. I hope it helps you out. My oral abx don't seem to be doing much except giving me a sore throat. Good Luck!
Hi Kim - so far, so good, I guess. well, yes, it IS good because I am on IV abx!!! Still kind of freaky having tubes sticking out of me for a month, especially with my 3 and 1 yr olds running around.....
I have only infused myself twice so I am pretty leery about it. I was giving myself B-12 shots for a while there and have had two hip replacements (congenital defect & sports injury) so I don't get queasy easily either!
My whole family has had a nasty summer cold so I feel more crappy than usual. Of course, the boys got it first and were fine in a day or two. My wife and I are dragging butt for days now. I am not sure if I will start herxing or what. Part of me hopes so - but I am sure you understand that!
Hi Andy
I really hope the IV gives you much improvement. My doctor just called with my CD-57 results and they were 2 and 36. I guess not very good. Although last time in December they were 3 and 21. He is still waiting on the co-infection testing to decide what to do next. I just want to blast this infection. It has been 8 months with not much improvement at all.
I tried only one B-12 shot and it hurt so bad I wouldn't take them anymore. My husband gave it to me and that was the only one. We ended up throwing them out. I can take pain but this hurt...
Anyway, I hope you have great success with the IV. I am not sure how long it takes for testing to come back from IgeneX but probably not for another week. I hope I don't have any other infections. Take care and Go Sox!
Hey Kim - I have never been tested for any co-infections but my LLMD thought it sounded like I had Babesiosis. I took Mepron a few times but don't know how well it worked because some of the same symptoms are still there. I doubt I'll be seeing my LLMD anymore as we just can't afford it unless it is covered by insurance (which we are paying over $1,000 a month for via COBRA).
I did the B-12 for a few months but didn't feel like it helped so I stopped. Couldn't justify the outrageous cost if it didn't appear to be helping....
I hope your test results come back quickly and you get some additional treatment (and hopefully IV)!!
My Dr. said it usually takes 6 weeks of B12 shots 2X weekly before you see the benefit. I just started taking them last week.
Kim- What gauge needle did you use? I am a HUGE BABY when it comes to needles, I mean bad and I am 43..Anyway I just numbed the site for about 3 mins with an icecube and I never felt the shot. My husband gave it to me. My Dr. said under the skin in the thigh or tummy..I chose tummy and used a 25 gauge needle. Maybe you were using much bigger??? Honest it did not hurt, so I am very suprised yours did. Sox are doing better We get to watch "The Director" pitch tonight!
I also wanted to ask about the cost...I have a 5 week supply that was $11.00 and my needles were $ 3.90 for the 10 weeks. WOW were in the world were you getting your B12 from???
Wow, my LLMD suggested a place in Concord (NH) and I was paying like $250 for 30 pre-filled needles. I was getting hosed! Not sure what gauge they were but if I jabbed quickly, it didn't hurt so much. I did 3 x a week and used 60 of them in total....
My folks live in Concord...and boy you were getting hosed on that one!! I have a vial and just draw out what I need for each shot. As I said, it is $ 11.90 for 5 weeks (at 2x per week) and the Rx was thru a major drugstore chain. I would not know why it would be too much different in price from Fla. to MA or NH. I think that is horrible. Maybe you were charged extra for them being pre-filled..but give me a break...should not have been that much more. I also think the needle gauge was alot larger than mine, as I said I can barely feel mine, and if I even think for one minute it is gonna hurt, I run. I do not even donate blood since I cannot stand the thought of a needle!
I think the needles were too long. We ordered them from a pharmacy in Bedford NH and we got two weeks worth for about 150.00. It really stung my arm too. I have lost alot of weight since being sick and I don't have any skin to pull up to stick the needle into. The doctor did say it was too long and offered to write another prescription but I said no thanks. I have never minded having blood tests or shots but this one no way.. mine were pre-filled also.
Do you have any idea if a CD-57 goes up 15 points from a 21 to a 36 means I am making progress. My doctor faxed my results so I have no idea if it means I am fighting this infection or not.
I am sorry you had a hard time with the shots. UGGHH. I on the other hand is one of the very few I read about that has put weight ON during this whole mess. Just my luck! And I did not need to put 1 lb on...I was already needing to loose 40 before this hit...sigh
I am told that when your CD-57 rises that is a very good indication that you are doing better. HOORAY FOR YOU!
My doctor will be away on vacation for a couple weeks so I can't ask him about the tests. I honestly don't feel much better. I read a little on the CD-57 and it said the number can flucuate some but until it jumps the infection is not controlled yet. I guess it is better than a decrease though.
I lost weight because I have severe adrenal problems as well. I completely lost my appetite. I am on synthroid also. Lyme does a number on our bodies huh? I hope you are having some better days. If it wasn't for my constant fatigue and sore throat I would be much better off. Hopefully the Sox can pull off a win tonight! Take care
Hi Kyle
The Picc Line is not so bad Keep in mind though it takes quite a long time to see improvement I have bee on 2 gram Rocephin since mid december I was not so well off since I did have the neurological part of the lyme Probably infected over 2 years with babesis as well I had cognitive problems thrush ear pain noise intolerance headaches and much more I stared on oral doxy in august of 2006 and had cva in dec Knocked me for aloop couldn't even think straight and used to sleep for a whole day sometimes I have seen alot of improvement but it has seemed to take forever but in the end will be worth all of it Do take a good probiotic with the treat the refridgerated ones are the best otherwise you will have bad gastric problems They work wonders for this also Milk Thistle for your liver to stay healthy My insurance has covered the IV so far 100% I wish you luck and good health for the future I also have a 2 yr neice that knows auntie has a boo boo and she realizes What I do with the machines after carefully explaining it to her so she would not worry about it Do realize the herxing can be quite difficult so any questions feel free to post andthe board was a great help when things were so difficult
I wish you luck and good health for the future
Ryebeach
