I am starting a new treatment with Dr. C in Tampa and wondered if anyone had any advise on this protocol. I am excited about it because I have treated for over a year with orals and no improvement.
Has anyone here had a PIV line? It seems like there is a lot of talk about PIC lines, but not much about PIV lines. I am wondering how difficult it is to keep up the maintaince, and if I can get it wet?
Also, I haven't heard of any of these medications before (Invanz and Tindamax), so if anyone has tried these medications, I would love to hear how it has turned out for them.
Thanks!!! Shalome
Posted by Dawn in VA (Member # 9693) on :
I don't know anything about PIVs or Invanz, but can tell you about Tindamax: it's in the same family as Flagyl (it's a cyst-buster), but has a slightly larger molecular size.
Posted by feelfit (Member # 12770) on :
Hey there Shalome,
I have just finished the treatment that you are starting with the same doctor.
A periphrial line cannot get wet. It must be kept dry and clean. Wrap your arm with Glad Press & Seal when showering.
Invanz and a cyst buster.....I used Alinia was well tolerated for me. Tindamax is also a cyst buster.
The progress with Invanz is slow and steady...minimal herxing. This is Dr. C's standard starting protocol.
Good luck to you, you're in good hands....any questions about anything else, feel free to Pm me.
feelfit
Posted by WildCondor (Member # 434) on :
If you are not getting results with that doctor, you should probably travel out of state to see a real LLMD.
Posted by feelfit (Member # 12770) on :
don't criticize this doctor he is helping a lot of us.....he is a real LLMD.....as opposed to yourself who considers herself an "expert" w/o formal training. Posted by 1Bitten2XShy (Member # 12280) on :
I had a PIV and had zero problems with it. I did keep it dry. Easy to change every 4-5 days, I guess that is the one downside...you have to get poked alot!
Tindamax was my friend..I did well on it.
Dr. C by the way is quoted in Dr. B's guidlines.
Posted by Need Lots of Help (Member # 18603) on :
I wasn't getting results with orals with the doctor in PA that I drove 17 hours to see. So, for finacial and sanity reasons, I decided to see a doctor only 6 hours away who was recommended by another Lymie.
Feelfit, Did you have the chronic fatigue stuff. Did treatment help you with that? Man, if I could get rid of that one symptom I would be soooo much better off.
Thanks a lot for the input!!! Anyone else?? Shalome
Posted by seekhelp (Member # 15067) on :
Feelfit, did you get my PM. I haven't heard from you for ages.
Posted by Need Lots of Help (Member # 18603) on :
Still wondering if this protocol may help with my fatigue symptoms.
Jez, I haven't had any antiboitics for 3 weeks waiting to get this line and now I am sick, sick, sick!!
Posted by Dawn in VA (Member # 9693) on :
Got curious about it and read online that Invanz acts similar to Beta-lactams- works on the cell wall of bacteria. So, with the treatment you described, you'd be working on the cell wall ("active" spirochete form) and on the cystic form of Bb. If your Tx will also include a macrolide abx, that would hit the cell wall-deficient form of Bb.
"Invanz is a once-daily injectable antibiotic approved for use in adults for the treatment of moderate to severe infections caused by common gram-positive and gram-negative aerobic and anaerobic bacteria.
Invanz (ertapenem sodium) is a structurally unique 1-(beta) methyl-carbapenem related to a class of antibiotics known as beta-lactams, which includes penicillins and cephalosporins. Invanz works by blocking the formation of bacterial cell walls, thereby causing cell death."
Posted by Need Lots of Help (Member # 18603) on :
I learn so much on here!! Thanks Dawn and Feelfit.
I go tomorrow to go get my PIV line. I am excited!
Shalome
Posted by feelfit (Member # 12770) on :
good luck tomorrow!!!! Piece of cake....let us know how you do!
Posted by Need Lots of Help (Member # 18603) on :
I went this morning and got my first dose of Invanz and I did not have an allergic reaction.
However, we have changed my PIV line to a PIC line. I have to go back at 1300 to get that line put in, but that line seems easier to care for.
Feelfit, will you PM me with the improvements you have had with this treatment and what you think of Dr. C. How long has it taken you to see improvments? Do you have Babs or Bart?
Thanks a lot!! My husband is nervous about this line....but, I have to try to get better, I am tired of being sick!!!
Posted by WildCondor (Member # 434) on :
quote:Originally posted by feelfit: don't criticize this doctor he is helping a lot of us.....he is a real LLMD.....as opposed to yourself who considers herself an "expert" w/o formal training.
Feelfit,
FYI I did not say anything bad about this doctor. I know people are being helped. I said if you are not getting results, then move on. Many patients have to change LLMD's, sometimes many times before finding the right LLMD for their individual case. It does not mean that said MD is "bad" just that he/she may not be the right choice for them.
Another thing, I DO have formal training feelfit, and although I am not finished with the medical program yet, I will be a Lyme Literate Physician Assistant. SO, before you bash someone publicly, please get the facts. I do not consider myself some kind of Lyme expert, but I do consider myself educated and supportive of patients going through treatment. Soon, that will all change when I am treating patients on a daily basis. My goal is to help save lives and help as many people as possible.
![[loco]](graemlins/loco.gif)
![[Cool]](cool.gif)