posted
I'm frustrated and need some advice, please.
After several months on oral abx with no response, I got my PICC line and have been on IV Rocephin for a month now. I've also had no response whatsoever to the Rocephin, so my LLMD wants to add IV Azithromycin to see if that will "stir up the pot".
I have to pay out-of-pocket for the abx. It's been costing me $110 per week for the Rocephin, and I just found out the Azith will cost me $300/week. I just don't have the money for that. There's no savings, no house to re-mortgage (we rent), literally no stone to squeeze.
On top of that, the PICC line had to be placed in an incredibly awkward place near the crook of my arm. It's inconvenient, painful, etc.
I want to quit the IV. Have the PICC line pulled. Ask my LLMD to put me back on orals. I'll go on stronger doses, more combinations, etc. I just can't afford the IV.
Does that sound like a good plan? The only alternative that I can think of, in this moment of frustration, is quitting treatment altogether for now. After 17 years of misdiagnosis and now this, I'm just over it. I want to crawl under a rock and pretend none of this is happening.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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gmb
Unregistered
posted
Only one month of IV Rocephin is not that long. What is your dose? 2grams 1x/day, or 2grams 2x/day for 4 days straight and 3days off?
Maybe the pulse dose will work better. I switched over to pulse after 6 or 7 weeks. Gave me weekends off.
Also what other oral ABX do you take? I was on Zith with many other combos for bart or babs, and pulsed Tini. Enough to kill a horse.
It took maybe 9 to 10 months before I saw improvements, mostly with joint pain and stiffness still at bay.
Depends on the oral combo I would augment protocol with oral ABX rather than break the budget. Hope you get IV stiff from Infuserve America or comparable source.
posted
2grams 1x/day for 5 days, weekends off. No other abx, orals or otherwise.
I'm beginning to doubt this guy's knowledge of Lyme. Dammit. (Sorry.) I really thought he knew his stuff. I can't believe this.
Should I pull the line and just do orals? I am just so confused now, and mentally exhausted. I just don't know what to do at this point. I'm too sick to figure this out and fight. Why is this disease so confusing?!?!?
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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gmb
Unregistered
posted
I hear you. I was lucky insurance covered my IV real well. Maybe your LLMD is just starting you out slow to see how you do on it.
You must due back to see him soon, so discuss your budget concerns and ask to come up with a mix of orals and give the IV Rocephin a bit more time.
IV suppose to reach the brain the best, but treating babs and Bart did more for clearing my brain fog than IV or other lyme ABX.
posted
IV rocephin never really helped me either. Wasnt till I did IV doxycycline that I noticed it helping. But I was lucky enough to get my insurance to pay. If they didnt I wouldn't have been able to afford it either. So sorry you're going through this.
Good luck with your decision.
Posts: 908 | From Albany | Registered: Nov 2008
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posted
How about oral zith along with the IV rocephin?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to be on more than the one antibiotic. You can take the zith in pill form. I hope you can afford that.
Lyme can evade one antibiotic, even if it is in IV. So, I hope you can see your way clear to adding oral zith.
To find out if your doctor is following the Burrascano protocol, compare the dosages of oral meds that he gave you to the Burrascano dosages. See page 18 of the Guidelines.
If dosages were too low, then that could be why you did not have a response to meds.
Also, Burrascano says you have to be on 2 meds at once when on oral meds, IM, or IV. See page 12.
So, if you were on just one antibiotic at a time, that could explain why you did not have improvement. (I was there. Did that for 2 years before I up and left that doctor.)
Here is the Burrascano dosage for IV:
"Treatment with ceftriaxone [Rocephin] is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams slowly once a day, four days in a row each week, usually for 14 or more weeks" (page 16)
And, Burrascano says you must be on Actigal to prevent gallbladder problems (if you still have a gallbladder). This is essential!
"Ceftriaxone- Risk of biliary sludging (therefore often Actigall is co-administered- one to three tablets daily)." (page 18)
At some point, your doctor has to add a cyst buster. That means flagyl (metronidazole) or Tindamax (tinidazole). When one of these is added, you will have a herx, no doubt.
If you want to post your prior medication combos, we can help you decide if the doctor knew what he was doing when he put you on orals.
Or, you can post asking for opinions on your doctor.
You have to get more info on this doctor so that you have confidence in him or decide he does not have sufficient expertise.
The doc is the key to getting rid of this disease. And, it takes an educated patient to be able to evaluate the doctor's treatment. So, do the comparison or write to some of us privately with your meds, combos, and dosages and we will help you figure it out.
Posts: 9931 | From Maryland | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Try a combo that hits the 3 Bs: Borrelia, Bartonella, Babesia.
You can do a combo of IV/orals or just orals.
DO NOT give up until you have many months of this under your belt. This turns the corner for many of us. You should notice improvement or herxing or a combination of the two.
Don't be afraid to switch Lyme docs. It's your life on the line. You deserve the best possible treatment.
Believe me, there have been many times I've wanted to meet you under that rock. But I just keep going. It's all you can do.
And don't financially cripple yourself until you can no longer afford any treatment. You may still have a long way to go. (Sorry.)
OCT: Doxy 200mg 2x/day Azithromycin 500mg 1x/day Omnicef 300mg 2x/day 1 Bicillin injection Vit B Complex, Andrographis, Stephania Root, Smilax (plus continue all prev supplements)
NOV: Doxy 200mg 2x/day Flagyl 500mg 2x/day 4 days on/3 days off 1 Rocephin injection 2grams Continue all supps
DEC: 1 Rocephin injection 4grams Continue all supps Start process for PICC Line
JAN: PICC Line inserted IV Rocephin 2grams 1x/day Continue all supps
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, you have just treated lyme disease in your 5 1/2 months of treatment. You have never taken anything for babesiosis or bartonella.
Since you never reacted to the lyme meds, I would want to add some babesiosis meds into your mix to see if that makes a difference.
That means adding Mepron/Malarone onto what you are taking. And, zith has to be taken with that, and artemesinin added also.
Some people are sicker from the coinfections than they are from lyme. So, you may not notice any improvement until you add in treatment for babs.
What has your doctor said about treating the coinfections? I would want treatment for at least the babs added in now.
Your doc had you on two meds at once for lyme in Oct and Nov. But, Sept, Dec, Jan and Feb you were just on one med. So, that isn't good.
You were on a cyst buster in Nov (the flagyl) and the dose was good. Why was that stopped after just one month? That isn't typical.
You were on Bicillin injections for just one month. It takes months to notice a difference on this med, but it is great treatment. So, I think this treatment was stopped way too soon.
You were on zith only one month and omnicef only one month. I find that odd. Do you know why you were taken off of that Oct. protocol so quickly? (This is an important question.)
Are you on Actigal?
I am not used to seeing meds changed as often as yours were. Do you know why your doc changes the meds monthly?
Burrascano says that the Bicillin injections are nearly equivalent to IV. So, if you can't stand the IV, you can ask to go back on the Bicillin.
Did you really do 1 bicillin injection per day? What was the dosage? Usually people do these 3 times per week or something similar.
Here is a quote from Burrascano about bicillin:
"BENZATHINE PENICILLIN Comparative studies published by Fallon et. al. at Columbia University have shown that parenteral therapy is superior to oral therapy in chronic patients. Options include intramuscular long acting penicillin G (benzathine penicillin, or “Bicillin-LA”) or intravenous antibiotics.
For an antibiotic in the penicillin class to be effective, time-killing curves show that significant levels of antibiotic must be sustained for 72 hours. Bicillin LA is a sustained release formulation that meets these criteria.
Published studies in children and adults, combined with over a decade of experience with this therapy by front line, Lyme-treating physicians have established the efficacy, safety and usefulness of this medication. In many patients it is more effective than oral antibiotics for treating Lyme, and compares closely to intravenous therapy in terms of efficacy if the dose is high enough.
It is usually administered three or four times weekly for six to twelve months. It has the advantage of being relatively inexpensive, free of gastrointestinal side effects, unlikely to promote the overgrowth of yeast, and has an excellent safety record spanning many decades." (page 16)
See in the above quote where it says that bicillin injections "compares closely to IV therapy. . . if the dose is high enough"
Here is a quote on the appropriate dosage of Bicillin LA:
"Benzathine penicillin- Surprisingly effective IM alternative to oral therapy.
May need to begin at lower doses as strong, prolonged (6 or more week) Herxheimer-like reactions have been observed.
Adults: 1.2 million U- three to four doses weekly" (page 19)
What was your dosage of Bicillin?
These are my immediate thoughts.
Posts: 9931 | From Maryland | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I'd keep IV in and add plaquenil if you can handle it. If not, add oral zith.
If it makes you feel any better, rocephin IV is a walk in the park compared to IV zith which must be administered at a pretty slow rate. So you're looking at a couple hrs minimum for a 500ml bag and even more for a 1000 ml.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
It is near impossible for us Canadians to get a PICC, so I will refrain from offering my two cents on that.
Go for coinfections FOR SURE.
And if your doc talks about blood tests for coinfections...find a new doc.
DO NOT spend any more money on blood tests.
After as many months as you have been seeing your doc with minimal improvements, he/she should be able to clinically diagnose your coinfections based on the abx you have already used and not responded to, and your remaining symptoms.
Actigal is a must if you continue with IV R.
I agree, you should be on a busload of orals with the IV R, unless nausea and stomach issues and malabsorption are some of your major symptoms.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I don't think the IV zith is a huge hassle. And I'm not sure that plaquenil and zith would be considered interchangeable.
IV zith is great for people who can't tolerate the oral version. And plaquenil is great for autoimmune issues as well as Lyme.
That said, IV zith is EXPENSIVE! So if one can tolerate it orally, so much the better.
One month of IV meds is nothing. IMO ppl need at the very least 6 months of IV---and not monotherapy. Don't understand why he has you on just the rocephin IV? Especially after he had you on various oral combos prior. And it does seem like he changed things up pretty quickly IMO.
You need a cyst buster like flagyl or preferably tindamax (which is apparently easier to tolerate by a lot of people). Our doc does 2 weeks on/2 weeks off. Two IV abx pulsed--4 days on/3 days off. He ramped up the rocephin to 4g from 2g.
So far I agree with everything he's recommended. Our prior experience with IV was 5 months of monotherapy with IV rocephin 2g. Huge fail.
Posts: 1885 | From here | Registered: Jul 2012
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Oh my gosh, I am just so confused. This disease is just so difficult to get a grasp of...especially while we're sick and can't think clearly.
To answer a couple of your questions: *The Rocephin and Bicillin injections were just one-time injections. To "shake things up" so to speak, to see if I would react at all. *A few years ago I was able to afford treatment for about a year, orals only, with no real response. I think, because of that, my doctor has it in his head perhaps that orals just weren't going to work for me, and that's why he so quickly changed me from month to month when I didn't have any response.
I put in a call to his office this afternoon. I think when he calls back I'll ask him, well, I don't know. I guess if I stay with the PICC and IV Rocephin he should add something else. And if I ditch the IV route, I want to spend longer on the good combinations of orals (including cyst busters and coinfection abx).
But golly, I am just so DONE with trying to figure out what I SHOULD be doing and whether or not my doctor knows what he/she is doing. It's just all so damned confusing!!! (Sorry...)
Should I stick with this guy? If not, I know it will be a long time before I can get back on this horse and try again. Besides money/insurance/travel issues, there is the mental component of trying & getting it wrong time and time again. I just don't know what to do and I feel like I'm too tired and worn-down to push through and figure it out this time.
You all have been so incredibly helpful. I'm so sorry to vent like this and seem like I'm putting it on you. So sorry.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Oh listen, you never have to apologize for venting! If you can't vent here, where can you??
My biggest regret is that I stayed with 2 docs way too long (both respected LLMDs BTW). Kids did not get well with either of them. But I just kept hoping and hoping and praying and praying and going and going and paying and paying.
Finally (thank God!) realized we needed a big change. And so glad we ended up where we are.
If you feel you're "done" with this doc, then follow your instincts.
But if you can get more out of him, I'd definitely pursue asking more questions and getting more tx before cutting the cord.
Posts: 1885 | From here | Registered: Jul 2012
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posted
I think everybody here's felt the same way. Just try to take a few deep breaths before you do anything rash
I've been on IV a few times, I don't do all that great on orals. But I've done better on orals AFTER having done a round of IV, like I get jump started from that. However, the least amount of time I've ever done any one IV has been three months.
And I've always been on at least two antibiotics at any given time (lately, it's been an IV med and an oral med). Generally, the only time I seem to hear of people using monotherapy effectively is when they're treating lyme prophylactically. As in, they caught it as soon as the person was infected, and give them Doxycycline. Seems like anything more complicated than that requires multiple prescriptions.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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