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IV Doxy: Pros Cons?

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Posted 3/17/2009 10:50 AM (GMT -8)
I just got approved for a PICC for IV Doxy. Now I am having severe second thoughts.
I am so tired of being sick, I have been on oral abx for almost one year (Doxy/Biaxin) and Bicillian shots 1/week for almost 6 months.I am still feeling so sick. And I am just tired of it.

Hubby is trying to get off all pain meds and eventually wants off of all abx.
I am trying to come off all pain meds, but just don't know what to do about that abx.

One the one hand, a year of abx seems like forever. Like how much longer can my body tolerate this??
Is the IV going to make any difference that the Bicillan shots didn't?

I don't even really care about the PICCline in the summer- at this point, that is the least of my worries (except trying to keep it clean, I guess)

Have any of you had to make a choice?
What are your experiences with IV Doxy?

Did it help, at all??

I just want to feel normal again.
Posted 3/17/2009 11:40 AM (GMT -8)
Hi,

I feel bad for you , you seem to be frustrated, but let me tell you I was on orals for about 1 year and went on IV rocephin I did that for a month and added Minocycline and Zithro, I did this for about 3 months all 3 med, than did Zithro only for about 1/2 year and I am MUCH MUCH BETTER! Please keep fighting for your health, its okay to become frustrated but try to come out of this MUCH STONGER, you will, I see you are in NJ who is your LLMD?

Posted 3/17/2009 3:01 PM (GMT -8)
I did not know they did doxy in an IV. Is that unusual? D

Posted 3/17/2009 4:21 PM (GMT -8)
Hi,

Judy 3 sees the same physician I do and I was also treated with a combination of IVs for many months and am so much better. Oral antibiotics did nothing for me. I don't know your situation but it doesn't sound as if you are feeling much better. I don't take IV lightly however there are some advantages in that it is easier on your stomach and a more powerful approach in attacking the infections. I do wonder why your doctor is chosing IV doxy? I know that some patients cannot tolerate rocephin but doing IV doxy in the summer makes life difficult. I don't know many doctors prescribing it anymore - I hear more about other combinations. Do you have any co-infections? Keep us posted.

bcaring
Posted 3/18/2009 1:47 AM (GMT -8)
Thanks for the input.
I am not sure why the doxy either.
DH and I see Dr F in NJ. But we saw her assistant the last two appts. After going over our charts w/ Dr F, she called back saying Dr F wanted him on IV Roc. and me on IV Doxy.
We didn't get a chance to ask many questions- and one big issue we have w/ Dr F's office is that it is very hard to get in contact by phone.

As for co's- I tested neg for bart and babs initially. They suspect Bart and and am now being retested for Babs. Whatever that means (the testing, bah)

Judy , yeah, I am really frustrated. I hate feeling like this, and for so long. And coming up on my year" anniversary" I guess I expected to be feeling better, not 100 times worse.

I need hope....
Posted 3/18/2009 5:36 AM (GMT -8)
I see the same doctor and she is very smart. I just wrote a long post and lost it. I have that happen occassionally and always wonder where it is hanging out.

Would it be ok to email you? I can say that IV doxy does cover a lot of bases - lyme, bart, erlichilosis, and some babesia. I do not take it lightly, but a PICC line is not that bad and it certainly is a more effective way of delivering the medication. I think the IM injections work better as a follow-up to IV or you need to do at least 3 per week to have an impact and they are not easy to tolerte. I made the most progress in months 11, 12, and 13 on IV Clindimycin. Funny - I just read that Dr. Jemsic's patients do very well on it and I don't see many patients using it. I do know it is tough to tolerate for very long.

Anyway, I think that considering yuor situation you need to fax "R" your questions and ask for a response. It takes a few days but she is always good with me. The communication is frustrating I know. However, I feel that Dr. F is very good but has a lot to deal with.

Let me know if you would like me to email.
bcaring
Posted 3/18/2009 12:21 PM (GMT -8)
bcaring- thank you for understanding- I think she is a great dr, but just hard to get in touch with- and I have lots of questions :)

I just got off of the phone with the Home Care and I asked if this was for doxy or rocephin- and yup- it is now rocephin I will be on.
I can't keep it all straight!

please feel free to email me -- I'll take any advice ya got!

faerywings1 at gmail dot com
Posted 3/18/2009 2:16 PM (GMT -8)
OK - case solved and glad it is Rocephin! I think Dr. F avoids IV doxy if she can because it takes a long time to dose and the sun sensitivity is tough. I was on Rocephin the first 3 months, then they found Babesia so I started to pulse Rocephin 3 x's a week and do IV Zithro plus Mepron every day. Wrapped it up with 3 months of Clindimycin, as I mentioned. Hang in there - Dr. F will get you better. And yes, she is hard to reach. I get the feeling that is not uncommon with a lot of the docs - just to much to do.

I found the Home Care Service people to be great - always call them if you have a question. They will take good care of you. In fact, they almost become a little bit of a support when they call each week to check in on you. One other little tidbit - they sent me a home care nurse that had some personal issues and I put up with it for a long time, which was a mistake. No reason to do that.

I did see your web site when I clicked on your name - very nice and the name is good.

I will try to email you tomorrow.

Take care,
bcaring
Posted 3/18/2009 4:23 PM (GMT -8)

Hi MarriedtoLymeinNJ.  I am sorry you are feeling so bad.  When treating these diseases, it is often one step forward and two steps back.  But at least forward does happen even though it may be slow.

From what I understand, IV Doxy is caustic to the veins and it is better to infuse it through a port-catheter.  The infusion can take several hours. 

I see in your other post that you will be on Rocephin instead.  It is a much quicker infusion.  Hang in there okay?  Good luck with your new treatment!

Posted 3/18/2009 5:14 PM (GMT -8)
Hi,

I am also a patient of Dr. F's, but I live in Connecticut.  I just had my picc put in on Monday and I will be infusing Claforan 3 times a day.  She said that if my insurance would cover it, she would prefer the Claforan over the Rocephin because of the gallbladder issues. "She mentioned that women who are "fat, forty and fertile", for which all apply for me unfortunately, seem to be the most prone for the gallbladder stuff.

I am having a horrible time trying to set up some type of home care because I am out of state.  She gave me a script and my insurance covered all the meds, but they are rejecting the home care.  At this point, I have no one to change my dressings.  I went around and around today with the Visiting Nurse Association and my insurance today to no avail.  This is the last thing I want to deal with.  I had to locate a specialty pharmacy to try to get dressing change kits.  The woman who waited on me said "I need to know which ones" to which I responded by breaking down and crying.  I didn't know they were more than 1 type of dressing kit.  I said to her that I cannot believe I have this line in my arm and I can't get someone to change the dressing.  She was so sweet and I felt like an idiot balling like that, but this is ridiculous.  

Does anyone have any info or see Dr. F who resides out of state and had a picc line?

Also, VNA is giving me a hard time because I already have received my meds from CVS and Rite Aid.  They keep telling me that I need to use a 24 hour pharmacy that supplies home care supplies.  I don't understand why they need that when they are only changing my dressings??   Sorry for the rant, but today has been a tough day.

 

Posted 3/18/2009 5:44 PM (GMT -8)
Mikesickchick,

I am sorry you are having such a tough day. I think I cried a lot out of frustration with coordinating everything - my mind and emotions were just not able to handle it all. Everything was very confusing. and it is the last thing you need.

I am a patient of Dr. F's and live in Pennslyvania. I have been on a PICC line. My first thought is why aren't you using Home Care Service out of NJ? They will ship the drugs and coordinate the visiting nurse and get the prescription renewed when it expires. They were very easy for me to work with.

I learned through trial and error that it is best not to get your drugs through CVS or a national pharmacy chain because VNA or other home care services don't want to be liable for caring for a patient using supplies and drugs that were not purchased through a home care pharmacy/agency. Ask VNA if there is some kind of waiver you can sign to not hold them liable for whatever they have a problem with.

I know this doesn't make much sense - it is late and I was going to bed but I felt really sorry about your situation. I will check the forum in the morning to see what the status is.

Hopefully someone else can be more helpful.
bcaring
Posted 3/18/2009 7:10 PM (GMT -8)
Hi Bcaring,

Thanks for the response.  "R" in doc F's office set everything up.  Doc F wanted me to do IV's since last summer, but I kept putting it off.  I was on orals for about 8 months, off and on.  I am so much better than I was before, but I still have several neuro symptoms that the orals didn't seem to touch.  Actually, Doc F gave me the scripts last September, but I never acted on them.  I think I was dreading what I am actually experiencing now. 

When I contacted the office again earlier this month and spoke to Regina, they just faxed over updated scripts to CVS.  They never said anything about home care.  I guess I should be held responsible because I guess I should have investigated this a little further as to what is involved.  Now I have these meds which I am afraid to infuse because I have no one to follow up with for the dressing.

I am upset now to find out that I could be getting my meds from the home care place.  I not only have to infuse 3 times a day, but I have to mix the stuff as well.  I had one quick lesson yesterday at Doc F's office and it wasn't even with her PA.  I had a nurse, I don't know her name, who was very nice, but seemed that she was a little busy to have to do a demo.  She kind of went thru it very fast.

I was hoping to have the PA or R do it for me.  I drove 1 1/2 hours to get a quick infusion and a demo.  I am not even sure what needle I am supposed to use for the Heparin infusion.  They didn't give me any additional needles, this is just a mess.  I will be trying to contact R tomorrow.  I hope that I can get the home care at least for the month.  Maybe after that, I can get the regular set up from home care.  I don't think my insurance will pay another couple thousand bucks for more antibiotics from another location. confused

Posted 3/19/2009 1:55 AM (GMT -8)
Mikesickchick

Oh no.... :(
I feel so badly for you!
IMHO- one of the worst things about Lyme and co's, is that it is so intensive on the patient.Which is the last thing we need. Nor are we capable of!!
My kids dr is wonderful- I take my own notes but he also give me a set of his own notes. When I get home I transcribe everything onto a document on my computer. Trying to keep track of two kids with Lyme, and dh very sick with Lyme- on top of me being sick-- well, I have been there with ya- I have broken down crying at my pharmacy too. As well as at my home, at the kids' school...

The thing with your picc is that even if you are not infusing, I *think* (double check me, this is going on info from last year w/ hubby) you still have to flush every day.

And did you get a pack of instruction sheets in your kit? Gary did, thank goodness, b/c one time his blood sugar dropped so low he passed out. We had Dextrose IV and I was able to use the instruction sheets to get him set up while I was waiting for the ambulance.

The other option- someone mentioned this somewhere si to see if you have a nurse in your neighborhood who could help, perhaps pay off the books? When I started Biciillin IM, one of my DD's friends mom's is a nurse, soo when she picked her DD upp my from my DD's birthday party, I asked her to show Gary how to do it! right then and there!


Ahhh the good old days :D:D:D:D

Good luck with all of this. I know- it is so hard.....
Posted 3/19/2009 6:34 AM (GMT -8)
Thanks for the responses.  I am contacting Dr. F's office again this morning.  I need to get some help with this.  I didn't know about the flushing thing.  Does that mean I should do a heparin flush after as well?

Posted 3/19/2009 9:42 AM (GMT -8)
If you can remember the word SASH - it should help. It represents the steps you take.

S = saline flush

A = antibioitic administered

S = saline flush

H = heperin flush

It sounds as if you will be infusing the antibiotic 3 x's a day. If that is the case, then you will do these steps each time you infuse the antibiotic. You might notice that you bruise a little more easily because the herperin does thin out the blood a little. You want it to so that it prevents any clotting in the line.

If you are just maintaining the line (ie not putting in any antibiotic) then you need to flush it with heperin once in the morning and once at night.

Definitely call the office. I know who showed you how to do it and I understand now why there is so much confusion. Not much enthusiasm or concern about you understanding the steps. You need Regina to step in and explain things. It is so hard in the beginning and hearing what is being said is even difficult, much less trying it all for the first time. Believe it or not, once you do it for a couple of weeks, you will whiz through it.

bcaring
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