posted
I was just taking a poll on how people have done on iv rocephin? How long you took it? and how you did afterwards? if you did well, and did you stay well? and were you able to stop antibiotics altogether? Thank you for any input, Dee
Posts: 79 | From Maine | Registered: Sep 2011
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for input.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I started taking IV Rocephin on December 1st, and am I feeling better for the first time in ten years. I still have a long way to go, but I've already seen some good improvements.
-------------------- Lyme918 Posts: 188 | From Massachusetts | Registered: Dec 2010
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dbpei
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Member # 33574
posted
BBinme, I am looking for the same info as you. I hope more people will respond.
Posts: 2387 | From New England | Registered: Aug 2011
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posted
Thank you lyme 918 and lymetoo for your input. I'm a little scared to take flagyl or tindamax due to large herxing, i have never taken either and been treated since 2003. I also do not know about iv for sure, only if insurance will pay. From what i've been told medicare( which i have) will cover 100% if done in a clinic; not at home, but the problem with that is that a local doc will have to order it as my LLMD is in NY and i am in Maine soooo, not sure if my pcp will order; i have an apt next month with her, but i really don't think she will go for it. But was hoping to get some more stories here. dee
Posts: 79 | From Maine | Registered: Sep 2011
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posted
My 20 year old son was on IV Rocephin for about 8 weeks and relasped after being off IV for about a month. His LLDR does not want to prescribe IV again so we are looking for a new LLDR.
Lyme 918 - can you recommend a LLDR. We are in Michigan, willing to travel. Thanks...Shay
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My 16 year old son did 10 months of IV rocephin with orals and it turned him around. I wish we would have done it a few months longer for lingering neuro issues.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Shay- I PM'd you. Michigan does not protect their LLMD's so many don't do IV or do it short term. They don't want to get in trouble.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Michigan doesn't have any aggressive LLMDs at all!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was on IV rocephin for 2 months, then had allergic reaction and switched to IV azithromyocin. I've been on IV therapy for 10 months and am feeling GREAT!! Around November/December, my ALS like symptoms began to resolve (no more muscle twitching/muscle/weight loss, weakness, hypotension, etcc......) after 6 years of progressive symptoms.... IV therapy turned my "disease" around, I hope anyone who has not responded to orals pursues prolonged IV therapy aggressively, it saved my life! I hope I will be able to post my success story in a couple of months, going to try to begin to wean from ABS this May... Wish me luck, and thanks to everyone on this board (P.S. I remember reading in the LYME disease book that was available for Kindle download free recently) that azithromyocin is thought not to convert spirochetes to cyst/biofilm form... but I do pulse tindamax with samento/banderol for cysts.... Good luck, I hope you find all the answers you need
Posts: 143 | From Louisville KY | Registered: May 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
how do you support doing the iv with probiotics and all?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
how do you support doing the iv with probiotics and all?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
cht girl, that is great that you have been doing so well. Could I ask... have you had to pay out of pocket for your IV therapy? I have heard that most insurance companies will not pay after 1 or 2 months.
Posts: 2387 | From New England | Registered: Aug 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I have read that Zithromax stays in your blood for a few days. I would imagine that IV Zithro is not needed and that oral Zithro should suffice?
I wonder how much more effective IV Zithro can possibly be?
Posts: 2094 | From NY | Registered: Oct 2011
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posted
dbpei, my insurance co. paid for 4 months, I'm appealing for the rest. I have found IV therapy to be fairly affordable. I considered Infuserve America, but found that the infusion pharmacy I was using locally (before insurance quite paying) was able to match their price (I asked them to send me a quote of what I would pay "out of pocket" price if insurance quite paying ahead of time). Using the local pharmacy actually saved me $200 a month in over night delivery charges that I would have incurred with using INFUSERVE America. I also got an order from my LLMD to teach my husband and myself PICC line dressing changes and therefore saved by not having a weekly nursing visit. Because IV Azithromyocin has a 48 hour half life (in 48 hours, 1/2 the dose is still in your system) I was able to infuse only 4 doses per week, which has been very cost effective. My IV therapy has run under $400 per month this way (of course, Tindamax and other probiotics,supplements have been an additional expense...) I would suggest you get a quote from your local infusion pharmacy as I did, you may find their prices quite competitive with mail-order pharmacies. Lymedin2010, perhaps oral Zith does not cross the blood brain barrier as well, I don't know, but I tried oral zithr twice for several months, and it did not work for me at all, but IV azith is working well for me......but we are all different...
Posts: 143 | From Louisville KY | Registered: May 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
Cht girl, thank you for that tidbit. It makes me want to try IV Zithro.
Posts: 2094 | From NY | Registered: Oct 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
cht girl, thanks for that info. My husband has an extremely weak stomach and I am also very scared of the responsibility of monitoring and doing myself. I guess after being taught, though, I might feel differently and have more confidence in my own abilities. So upsetting that insurance will not cover something so necessary...
Posts: 2387 | From New England | Registered: Aug 2011
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