posted
I am on my third LLMD...now with the heavy hitter in NY...'have been with him since January. Not really improving at all...and some things are definitely worse! 'Been sick for almost three years...been treating for 2.5.
He said that I was probably going to need to go back on IV (I had been on it 2010-2011 for about 5 months of infusions [but had the picc line for 7 months] with rocephin and then doxy. 'Had slight improvement but could've been the bart orals that I was on immediately following the removal of the picc line...but then had to go off the fluroquinolones due to tendon issues and rapidly plummetted). My issues are mostly brain-related, although, of late I am beginning to have some joint pain/stiffness, which I never had before.
He suggested IV vancomycin along with IV glutathione. Any thoughts? Which IV meds are considered to be the best/most effective? I realize the risks of vanco, but, quite frankly, I'll cut my legs off if it's going to help. And, he seems to think that rocephin is not effective the second time around (and, quite honestly, I don't know if it helped much at all in the first place).
Any thoughts would be appreciated? Did any IV meds really help you to turn this very sharp corner (especially with sever brain impairment!), and get you well, when orals were just not touching anything?
'Really struggling lately...
Thanks!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
What dose IV Rocephin? I understand that some docs give up to 3 grams daily!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
i know people who had huge gains with vanco, I'd do it. Is it for Lyme or bart?
Have you treated coinfections?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hey there, Ive been treating about the same time as you and have nuero symptoms. I just started IV for the first time and my Dr has me on Invanz.
He says he likes it for nuero patients cause it crosses the BBB more so than rocephin. I've only been on about 10 days, so no feed back really....although i am feeling pretty good.
Which infection do you think is causing your symptoms? if you already did Bicillin, and Rocephin...maybe its more Babs related?
Also, just a side note, my Dr wanted me to try Hyperbaric while on the IV to see if there is any change in the IV's effectiveness. Maybe something to ask ur Dr.
Posts: 844 | From CA | Registered: Apr 2010
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Hubby just had a phone conference with his LLMD in regards to IV meds. He is reacting to the IV Rocephin (his 3rd time) and IV Zithromax (2nd time) differently than in the past. Much stronger herx reactions where he had no herx reaction last time -- just felt better and better.
The docs opinion is that part of the difference is that he is also on flagyl this time. No cyst buster the first time on rocephin (were not used back in 2003) and he was on tindamax the last time.
Pulsing in IV Flagyl at only 250 mg for 2 days landed him in the ER. And he had been on oral flagyl for many months.
Actually the 2nd time when hubby was on rocephin and zith with tindamax he felt the best he had felt in the 10 years since he got sick -- but in hindsight that combo probably just put the lyme into cystic form.
The problem for hubby is that he is also trying to treat babesia and also cover bartonella and ehrlichia/anaplasma all at the same time -- so that limits med combos.
Plan is to add IV clindamycin next -- increasing rifampin did not work -- decreases too many other meds he is on.
If the rocephin, zithromax, clindamycin, flagyl, lariam, malarone, rifampin, ivermectin plus sida acuta, artemisinin and other herbs do not work then we will probably have to totally rework his meds.
The few times hubby got IV vanco during various hospitalizations he did not feel it was helpful and IV doxy landed him in the hospital last year so I am not sure he would be willing to try that again.
Primaxin is the same as Invanz I think -- a different generic form. Anyway hubby did pretty well on IV primaxin in the past -- except that it was the same as IV rocephin the first time -- bart had not been treated either time and so neuro improvements started going away within a week of coming off the IV's. I know rocephin is supposed to be bacteriostatic for bart and I think primaxin is probably as well.
My suggestion would be to be sure to cover bart with either cryptolepis or sida acuta as well as rifampin with whatever IV lyme meds you end up taking. You could try factive if you have not done so -- it does not seem as hard on the tendons as levaquin.
Actually for some strange reason last summer hubby added in oral doxy and his tendons quit aching even when he continued on levaquin for several months.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Actually some docs give up to 4 grams daily of IV rocephin 7 days per week -- see the new book of case studies.
Hubby tried that for a couple of weeks but it was too disturbing for his brain. He switched the 2nd dose of rocephin to zithromax to get a little calming effect on his nervous system.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Dr. J in DC is now using IV Clindamycin on patients who haven't reponded well to treatment. Results are promising.
I ahve a thread on it. Search for it
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
rocephin started to help in sixth week, eventually plateaued. vanco made even greater difference. both used alongside cystbusters.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
I am going to be starting IV Rocephin soon.
I've been on many orals in the past with no improvement, but I herxed like crazy. I never was able to ramp up to the recommended dose of any antibiotic.
I am now prescribed Rocephin IV, 2g, 2x a day, 4 days on, 3 days off.
Is this a typical dose? If so, I wonder if it is too strong for me to start with in the beginning.
As well, they want me to have a port, not a picc line. Has anyone had a good or bad experience with a port?
How long does it take to administer one bag of abx?
Also, what is your experience when comparing oral abx to IV abx? I am wondering if IV will be even more difficult to tolerate, or the opposite? (Yes, we each have different experiences, but I'd like to hear any thoughts or opinions!)
My lyme has been very severe for 12 years, but I've likely had it for over 25 years, and believe I was reinfected along the way.
It is so pervasive and has been so destructive, it makes me curious about how long it would take for someone like me to see any results. I know that none of you know the answer to this, but if you've been very ill for a long time, and have had improvements, I'm very curious to know how long it took you, and what worked.
I'd be interested in hearing any experiences related to IV therapy.
Thank you!
Posts: 19 | From Indianapolis | Registered: Jul 2008
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posted
Alee, I started IV Rocephin last week. Same plan as you - 2 g twice a day, four days on, three days off.
It makes me feel like I have a mild fever, then lightens up during three day break. Today was second day of second four day cycle, I slept almost all day.
I'm also on Flagyl, Biaxin, Malarone, and Septra. The only bad reaction I had was was starting Malarone and Biaxin the week before IV.
As a side note, pulsing Rocephin not only attempts to follow LLMD's belief that pulsing works, but helps stretch out the 28 day limitation imposed by insurance companies for a "Lyme only" diagnosis. Twenty eight days of IV bags can be spread out over 7 weeks if you're only taking it four days/week.
Posts: 99 | From Cali | Registered: Dec 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Bea you said:
quote:Actually the 2nd time when hubby was on rocephin and zith with tindamax he felt the best he had felt in the 10 years since he got sick -- but in hindsight that combo probably just put the lyme into cystic form.
Tindamax is in the same class as flagyl and considered a cyst buster too, in fact Dr. Sapi thought it was one of the best drugs.
Posts: 2888 | From USA | Registered: Mar 2004
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Wow, you are taking a lot of antibiotics. The thought of Flagyl makes me squirm from how bad I reacted to it years back. My LLMD had me just scraping off a small piece of Flagyl to get it in my body! Clearly, my bacterial load has been very high.
How would you say you are doing overall? Obviously, you are able to tolerate all of these meds.
I run fevers daily, and that is the very least of my ailments. It sounds like you are handling it okay.
Would you say you were very ill before you began the meds?
Thanks for your reply!
Amanda
Posts: 19 | From Indianapolis | Registered: Jul 2008
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