Antibiotic IV and what you went through

Could those of you who have had an abx IV tell some of your story about what you went through.

How did you talk your doctor into prescribing it?
Did you have to go to a special doctor to get it?
How much did it cost?
What were the herxes like?
Did it cure you?
Did you have neurological lyme?

My second LLMD recommend IV after four or five months of treatment. I had treated for a year prior with an LLMD who did not aggressively attack co-infections.

I looked at insurance coverage and costs first, and my company at that time offered two levels of coverage. I waited until Nov for open enrollment to change to the better plan, with low deductible. I would hit my deductible within the first few weeks of the year, and Ins covered the rest.

You should first look at for how long your insurance will cover this. It varies from state to state. I'm lucky in RI that my Ins has to cover all Rx within plan for as long as Dr requires treatment. Some states will cut off IV after 30 days. If that's the case I would not recommend going thru all the hassles.

Costs vary widely. PICC line placement cost me around $500 and was done in an outpatient vascular clinic. Some states require that the procedure be done in a hospital which will be more costly.

For IV Rocephin with Hep and saline, and all the supplies the best cost I saw was from Infuserve America for amount $800 per month. You still need to have either a home nurse, or get a family member trained, in changing the dressing weekly and other maintenance.

I had both arthritic and neuro sx. Joint pain and stiffness were the first to improve, and I plateaued at about 50%. Treating Babs and Bart aggressively while on IV got me to 80% or so. I had the PICC removed after 16 months and treated for another year before weaning off ABX and trying herbs for maintenance, but soon relapsed.

Some lingering neuro issues remain and treating the final 20% is more difficult than the early part of treatment.

your mileage may vari. Google "Infusing for Lymies" and download the free booklet. It's pretty funny in a way.

good luck with your decisions

Hi there gfields -

I’ll share a little more about your options and also my experiences. I answered your specific q's at the end of my post. I intentionally included context because I think it's a big and important decision that needs to consider several factors. But I should probably edit this down --sorry that takes a little more time than I have today. I'll be including some of this info in the "New to Lyme?" thread soon for easy reference.

I’m on:
1.5g Rocephin IV (4 days on, 3 days off)
1g Vancomycin IV (every 12 hrs)

Dx:
Lyme (CDC positive), Bartonella (Fry Labs positive) and Babesia (negative but many sx), multiple high viral loads and yeast/fungal overgrowth – stopped testing after those results because whatever else was undiagnosed was not as dominant.

I went 16+ years undiagnosed so I was chronic and had a lot of damage. My hip and knee joints were so painful I could barely walk by the time I started and I had severe psycho-neuro problems among many, many other typical lyme & co symptoms. Some MDs will tell you the only way to treat chronic cases is IV but I don't think this is true. The only thing true across the board from lyme patient to lyme patient is the need to fully understand what is going on in the body IN ADDITION to lyme & co and the need to detox...

Decision to use IV
I won’t bother with the litany of symptoms I had but with respect to the IV decision - I had struggled with massive GI problems for 6 years and there was no way I was going to take any oral antibiotics. I would have opted to not treat lyme and die before making my GI worse – it was that bad.

I also had NO understanding or experience with herbs and had no confidence that I was going to be able to do herbal treatment on my own (but many others are doing so successfully). The only LLMD in the area who accepted insurance (which I didn’t have at the time so I had to sign up anyway) used a hybrid tx with herbs AND abx. But I still likely would have had trouble using my gut as the main reception for herbs--with all the damage going on it wasn't functional. So IV was an easy decision for me.

APPROACH
HOWEVER, my LLMD got my yeast/fungal and viral loads down before starting ANY treatment, which I advise for everyone--particularly chronic or tough cases, regardless of their protocol. Way too many LLMDs/NDs do not do that and subsequently lyme & co treatment either fail or patients are herxing so extremely that it's detrimental to healing and some stop treatment – there’s no way your immune function can handle everything at once. With chronic conditions, it usually takes awhile to get ready to start treatment.

DETOXING: I fixed my detoxing issues (most of them) and learned how to detox, what worked, what didn't and got a good rhythm going before starting treatment.

IV ANTIBIOTICS
I took Rocephin for 1 yr before starting the Vanco. There are other meds that get through the blood/brain barrier but the IV meds certainly do. This was KEY for me – I was having a lot of psycho/neuro problems and boy, did the Rocephin hit them. I started out with 1g daily and transitioned to pulsing 1.5g/day part of the week.

HERXING: I cycled through nasty extremes for 4-5 wks when I first started (I’d be anxious one hour, then morose and sad the next hour with convulsive crying, then I’d have rage the next hour, then panic…) it was relentless and THE scariest group of symptoms of my entire 18 yr illness and treatment… but necessary to kill the infection in the brain.) It was nearly impossible to function – my cognition was so impaired, tough to maintain dosing schedule or detoxing, which I think made herxing that much worse. Eventually, I detoxed like a mad woman and stayed away from people LOL and got through the worst of it. I went from wheel-chair bound to walking again within a couple of weeks on the Rocephin. I’ve maintained 80% improvement a year later.

gfields said...
How did you talk your doctor into prescribing it?
Did you have to go to a special doctor to get it?
How much did it cost?
What were the herxes like?
Did it cure you?
Did you have neurological lyme?

First, no matter the treatment, you should be working with a lyme-literate MD or ND. It's likely the ND can't prescribe IV abx, though but might be able to work w/ your general MD to do this but that's also likely to limit your tx period. An LLMD is probably the best route if you are considering IV treatment. An LLMD who accepts insurance is very difficult to find but you probably already knew this.

Also, there is no "cure" for lyme & co. The goal is to get your immune system strong enough to dominate the infection, get rid of symptoms and heal the whole body and the systems that were damaged by the infections. Most chronic patients don't ever achieve 100% recovery but MANY get back to their 90% level of functioning.

And as I previously mentioned, IV is not a panacea, it's not necessarily the only way chronic sufferers can heal - and even if it is successful for you, there is still a whole lot more to do to heal than just abx.

TO IV, OR NOT TO IV
Finally – to your questions (I always find it’s important to understand the context for why people have opted for a specific treatment protocol):

Info on IV ports (names for different models: Port-a-cath, Smart port, etc.)-

PROCEDURE:
- The port installed usually in the right side of your chest a couple of inches below your clavicle.
- This is an all-day outpatient process – although the procedure is done in an operating room so you go through all the protocol (dressing gown, a numbing solution for the surgical area is pumped through IV and lengthy recovery and observation). I had this done at Interventional Radiology at a hospital nearby.
- The surgeon makes a 2” incision in your chest and places the port and catheter inside, and also makes a 1/2 “ incision at your neck and guides the catheter to loop up into your neck and back down into the ventricle.
- Once the procedure is done – you can’t see any part of the port or catheter – it’s all “subterranean”.

EQUIPMENT:
- A port is a little circular titanium device (about the size of 6 stacked quarters) that has a membrane over the top of it that the needle is punched through – it kind of acts like a “skin”.
- A catheter tube attached to the port.
- You’ll also need sterile dressing kits and bandage coverings, needles and claves (“nobs”), saline syringes, heparin syringes, alcohol wipes and Sharps container.
- The home health care will either provide these for you or you can purchase them along with your Rx.
- The home health care delivers the supplies and the Rx syringes or pressurized pumps weekly – I keep the Rx in the fridge.

RECOVERY:
- Both incisions healed pretty fast and the scar at the neck is barely visible now. The incision on the chest was done cleanly so it’s just a (relatively straight) horizontal scar.
- Soon after installation, your tissues are supposed to form a pocket around the port to hold it in place and my body would not do that—whether it was me being too actively (probably) or the lyme & co causing healing problems (also very probable). You’re supposed to be sore/tender for only a couple weeks and most people are. It took me 4 months to heal and for the swelling to go down and that caused many problems with getting me accessed correctly, it was very painful most of the time – I had trouble sleeping, and accessing me was painful.
- I finally healed but by then the port had shifted out of place over an inch—too high toward my clavicle, which meant that the tip of the catheter that is in the ventricle now sits too low and far into the ventricle. It sometimes gets sucked up against tissue there, preventing the nurses from getting a blood draw – which isn’t a dealbreaker. It can also aggravate my heart if I slouch so once I figured out what was going on and why (which took 2 trips back to the surgeon to have him run images and test out functioning with a contrast) – I haven’t really had much problem.

ACCESS:
- When my nurse is scheduled to come once a week--right before she comes I infuse my dose, deaccess myself (see below) and take a shower—to get ready for a new needle.
- To access the port, the nurse uses sterile techniques (gloves, mask) and a sterile “dressing kit” and cleans a 4” diameter area of your skin above the port.
- She takes a special IV needle designed specifically for ports and basically punches it through your flesh and in through the membrane of the port (although she does this gently – takes accuracy and pressure, not force).
- Attached to the end of the port needle apparatus is a catheter with a pincher used to stop or open flow through the catheter and a “nob” or clave onto which you screw the syringes for infusion.
- Then she takes a specialized sterile, breathable 4”x5” clear bandage and applies it over the needle to keep the area sterile.
- about 6” of the catheter sticks out of the bandage and I usually tuck it into my bra.

Also – there are different sizes of ports – mine happens to be small and the membrane over the top of it which is what the nurses punch the needle through is a small target… I’ve gone through nearly 2 dozen nurses at my home health care co who have trouble accessing (and the scheduler is not very cooperative and sends “whomever”) and finally had to demand that they send only one of 3 who were consistently successful. I now have one who is a gem and gets it every time (although of course, she’s been out with back problems).

DEACCESS:
- The nurse will teach you how to pull off the bandage and pull out the needle on your own – it’s easy and painless. Once you deaccess you can immediately get the area wet. The needle marks do leave a scar over time.
- I use a Huber safety needle—which has more to grip, easier to access and deaccess with, and has a built in needle protector to prevent punctures. It’s awesome.

RESTRICTIONS:
- You can buy “waterproof” bandages that are to be applied over the whole area but these never worked for me and if you ever get the bandage wet, you have to have a nurse come and “re-access” you – it compromises the sterile environment.
- When I was accessed I functioned normally (except the showering) but had problems if I got too much sun on the bandage or got too sweaty – the adhesives made me itchy and sometimes blister and so I had to deaccess myself, nurse came and reaccessed me.
- But when I wasn’t accessed – I could shower, swim, anything.
- You don’t feel the port or catheter from inside so there’s usually no discomfort or restriction of movement. But it’s not always comfortable to sleep on my right side anymore.

MAINTENANCE:
- After the nurse accesses you she’ll push saline through and will also pull back to get a blood draw to ensure proper function of the line to make sure it is not clogged, ensures there is no infection, she may give you an enzyme solution to help dissolve any blood clots or tissue growth that may obstruct flow, she sanitizes the area and applies new dressings.
- When all goes well, she’s here 20 minutes.
- I don’t have any other maintenance inbetween infusions other than to be careful not to get it wet and to watch for a reaction to the adhesives.
- When I have had problems with blistering – it tends to swell the whole area making the accessing difficult… this took awhile to figure out (why it was tough for the nurses to access me and why it hurt when they did—the tissues were too swollen so I’d give it a rest for a couple of days and was fine).

INFUSION:
- I use the alcohol wipes to wipe off the “nob”, screw in a syringe (S) and push it through, then I infuse my antibiotic (A), then another saline syringe (S) and last is a heparin lock (H)… SASH. Easy to remember.
- I am very reactive to medications and had an immediate reaction to both Rocephin (itchy eyes) and Vancomycin (burning scalp) but neither were anaphylactic responses.
- It’s good to have Benedryl on-hand, which is very effective.
- But a lot of people react and the reason is that the infusions are too fast. It’s a VERY easy fix to just slow them down. I take 15 minutes to infuse Rocephin syringe and have a 2-hr regulator on the Vancomycin pressurized pump.

RISK:
- Risk is infection but if the nurse is doing what she’s supposed to be doing, you’re also following instructions and keeping it clean, making sure the bandage is intact and protecting a zone around the needle entry, then there is very little risk of infection.
- It has this advantage over the PICC.

COST:
- I’m in California and my LLMD participates in only one health care plan so that’s the one I switched to but it had an “Obama Care” Covered California option that I chose and 6 months later it was dropped.
- So I had to purchase coverage directly through the insurance company (premium went from $250 to $600 and just increased another $100 this year).
- My insurance initially approved a PICC line but my MD lobbied on my behalf that a port will be more convenient and safe since I was expected to be in treatment about 2 yrs.
- Took a couple of months (due to some confusion and lack of understanding on my part) and they scheduled the installation.
- The total installation cost for my port was $27,000+ and my out of pocket expense was $600+. My monthly insurance premium is $700 and I pay roughly $800/mo out of pocket for Rx and everything else. Very expensive but for me the port was well worth it.
- The costs above include: home health care visits are $300 for 2 hrs (regardless of how long they are here) and I pay $18 out of pocket. Supplies and Rx are about $5,000 per week (the Rocephin is expensive, the vancomycin is dirt cheap).

*************
The following is the other option – a PICC line and I’ve never had one installed but studied it before making my decision – please, any posters who have had a PICC please offer corrections to the info below if you have any!

IV PICC line - generally used over IV port for shorter treatment

PROCEDURE:
- Also an outpatient procedure: an incision is made at the arm and another at the neck and a catheter tube is thread up toward the neck and down into the ventricle.
- The catheter is stitched into place so that it doesn’t slip and the “opening” in your arm is covered with sterile cleaning agents and bandages to prevent infection.

EQUIPMENT:
- The catheter tube sticks out from the opening in the arm and has a pincher that allows you to pinch off flow into the catheter and a “nob” that you screw syringes into.
- Most people wrap this up and out of the way under a separate sleeve that you slip on your arm and then you can wear your clothes over it.

RESTRICTIONS:
- Due to the open wound through which the catheter extends, you cannot swim with a PICC line but if you can protect your arm with waterproof coverings you can shower.

MAINTENANCE:
- A nurse comes weekly, observes the function of the line to make sure it is not clogged, ensures there is no infection, she may give you an enzyme solution to help dissolve any blood clots or tissue growth that may obstruct flow, she sanitizes the area and applies new dressings.

RISK:
- The main concern with PICC lines is infections since an open wound for the catheter remains open – it doesn’t necessarily heal closed.
- Generally, anyone facing long-term treatment (more than, say 6 months) has a port, not a PICC but as the comments above show – there are many exceptions.

Hope this is helpful - please ask any other questions you have!

-p

Post Edited (Pirouette) : 5/28/2016 6:00:58 PM (GMT-6)

Wow, I was getting ready to reply but Pirouette covered it all pretty well! Kudo's to your elaborate reply posting P

My personal response to your one Q: "Did it cure you?" - No it did not cure me. However I only did 2 months of Rocephin(I had a picc line) and most importantly, not necessarily because of my length of treatment that I am not healed but more due to the fact that I had co-infections bartonella and babesiosis that were not diagnosed/nor treated during that time. Rocephin works wonderful for lyme though. It cured my mom who actually had lyme *only*. I recall her saying "it was the best she felt in years being on that stuff".


-Courtney

Thanks guys - glad the post is helpful. But your comments were good too and reminded me of a couple of points to make maybe not necessarily for your benefit but to help others who might be reading this and to better develop the info I want to include in a "New to lyme?" addition.

First - No, Rocephin doesn't cure lyme.
It does kill spirochete form. You will also need to incorporate other protocols to kill the cyst and L-form lyme. This is one of the many reasons it is so difficult for chronic cases. But for people who are treating right after infection, a spirochete abx might be sufficient.

So, then, why go through all of the effort for IV abx if there is more involved?
The IV helps bypass issues in the gut. I think gut/digestion problems are more prevalent than MDs acknowledge because it's yet another area of medicine not well understood. And if you have gut problems and damage, you could be implementing the best treatment possible but it's also possible it's not all doing what it's supposed to be doing if you're taking it orally because your gut is compromised. Your meds/supps/foods will not be well absorbed and your immune system will continue to struggle.

For me, I was doing everything I could to heal my gut but wasn't going to be able to wait another 6 months to complete that process before starting oral abx and even if I was willing to wait 6 more months to start oral abx there was no way I was going to risk undoing all that hard work with more gut damage with the treatment.

A big concern for treatment and a source of a lot of controversy is the fact that people are on these abx for so long. I will update with a little more developed answer after I talk w/ my LLMD about this. My shortest explanation is that the longer I am on the IV Rocephin, the less intense my sx but I have had new sx pop up long after I started the abx---I've read that this is the abx hitting new pockets of the infection. I'm grateful for that.

And the last thing I wanted to mention is that the gut issues were the primary issues I chose IV. But also, I wanted an LLMD's support--some people can do w/out (but I think this is not common and you have to be a certain type of person with certain resources to be able to do this tx on your own). And she uses the hybrid approach so I ended up on abx and herbs.

If I had it to do all over again...what would I do differently?
Honestly, to do it all over again I would have targeted bart first. I wrote about this in another post so won't repeat it here since it doesn't have much to do w/ the IV issue. But if I had done that, I might not have had to be on IV abx so long because it might have cleared some cognitive problems I had that really disrupted my treatment. Also, I wish I had stopped working when I started tx - my job is way too demanding and stressful and this made my tx almost useless.
www.healingwell.com/community/default.aspx?f=30&m=3625235

And I also suspect--can't say for sure--that once I had a little more brain function (by treating bart) I might have had the energy and confidence to try treating lyme w/ herbs only. What I did try in the beginning didn't work but there are more protocols to try. However, I was quickly becoming less and less able to walk so LLMD started IV, which reversed that problem.

Knowing what I know now there is one thing that would have kept me from pursuing IV route:

One thing I had not anticipated was how difficult it was going to be to manage. Here I am, a sick patient (who has cognitive problems) and most of the time I seem like the only person who has a handle on my case at this HHC company. The only saving grace is the nurses are sweet and wonderful and caring.

But the IV management in addition to ALL the other complex components of lyme & co & yeast/fungal & virus treatment & detoxing has been extremely difficult. I mean, my day now starts at 7am for my first infusion (regardless of whether or not I've slept the night before because I have a 7pm infusion that can't be pushed later or I won't be able to go to bed until midnight) and then I am taking something every half hour of the day after that. It's mind-boggling. My inability to keep up with everything has been the biggest detriment to my protocol.

Home health care - not what I thought it would be
A big surprise has been the home health care company. I had no options - I got the service I got. The company I started with was bought by another company in my first 6 months. I was already having problems w/ them but they increased after the buyout. My main complaint is that in order to make their company run more "efficiently" (read: profitable) there is NO case manager - the nurses no longer have patients they follow and maintain info on. I want to be fair to these people because I have yet to talk with anyone there who isn't nice and caring. But I am shocked at how much MANAGEMENT I have to do on a weekly basis:

- I have to deal with the person scheduling the nurses when there are scheduling issues

- I have to deal with the nurses who are trying to schedule a time to come to me (finally narrowed this to one nurse - when I had different nurses coming each week I had to deal with their different training habits, I had to constantly repeat various information about my tx and you all know how complicated lyme & co is--this literally wore me out. All except 2-3 nurses had problems accessing me (mainly inexperience but also talent) so they would stick me 4-5 times (PAINFUL) and they would be stressed out, I would be stressed out and in pain and we're flying through the supplies and then they'd have to send someone out the next day...

- I have to deal with the person who takes more order for supplies & Rx delivery each week - can't tell you how many times, despite emailing the exact info, repeating it on the phone, they send the wrong needle or something.

- I have to deal with the pharmacist who has at times been baffled by the very unfamiliar lyme & co treatment and faxes questions to my LLMD whose staff doesn't always respond timely or appropriately (in addition to wrong phone numbers, missing labs, unreturned messages, MD on vacay---I had no idea things could be so screwed up). so I've had to play go-between to make progress on communication. My MD's assistant and the pharmacist argued and miscommunicated about my initial dosing issues which dragged on for 5 wks --I finally had to step in and handle it myself.

- And I have to communicate with the delivery guy who delivers the supples & meds.

AND... just when we finally get into a rhythm someone new calls me the next week (for various reasons) who is completely unfamiliar with my info and tx.

I've spent sleepless nights wondering why this has been so stressful and difficult. I have a couple of theories ---

1) the lack of a case manager is a sure-fire way to dump all this responsibility on the patient.

2) the record-keeping must be horrible, I've asked them repeatedly to make notes of this or that so I didn't have to constantly repeat myself--sometimes it's done, sometimes it can't be done, and most of the time the nurses (who all operate from a pad or smart phone) can't access the info! And I don't think the nurse's scheduling program/system syncs with the pharmacist's, etc.

3) the buy out surely made things more complicated although a couple nurses I mentioned this to didn't agree

4) this is the future of home health care. We don't have a system that cares for people, we have a for-profit business model. As the health care industry grows, the "professionals" entering this field are less and less the devoted and selfless "angels" but people who are looking for job security. There will be fewer ways to filter out the less capable because there are jobs to fill. This is a grossly generalized statement and it doesn't apply to everyone everywhere - but it's a trend I'm seeing.

This all might be difficult to follow but wanted to share that there is a lot to consider before going the IV route. I don't regret it at all. I do wish I had treated bart first and that might have changed everything.

gfields - no - never tried rife. Also, I had an IV port (installed in chest) not an IV PICC (in arm).

-p

Post Edited (Pirouette) : 5/28/2016 6:49:37 PM (GMT-6)