posted
Has anyone actually made a complete recovery from 1-2 months of IV Rocephin? I have only had symptoms for a few months and my insurance will only cover 30 days of IV treatment.
I am willing to pay another 30 days out of pocket but just do not know what to expect. I'm only 21 years old and just want my life back. Thoughts?
Posts: 306 | From NY | Registered: Sep 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
As a precaution, you might want to ask your doc to consider putting you on an oral triple combo of ABX as a follow-up (preferably macrolide + beta-lactam --Rocephin is one if you decide to pursue an IV route again; there are also many IM and orals to choose from in that category,too + cyst-buster).
(Not medical advice, just personal experience and generalized info.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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onbam
Unregistered
posted
A believe most relapse after that therapy...that's what the studies show, anyway.
I'm so sorry that you are afflicted with this horror at such a young age...
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posted
Do the 30 day rocephin it will help and in my case 60 days of rocephin resolved all my symptoms but don't do the same mistake I did .I relapsed after a month because did not treat at the same time coinfections.Take Flagul 3 times a day 250 mg while on rocephin take something for yest( Diflucan) and allso azithromycin for L-form of Lyme.If I was you also will add some Gentamycin for Bartonella same time as you take rocephin but do labs very frequently and be carefull gentamycin can damage earson the long run.And yes take allot of probiotics.
I'm not a doctor but have friends and family that do medicine for living.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
My LLMD refuses to treat me for any coinfections since I tested negative for all of them, that is what makes me nervous as I am very suspicous that I have either Babesiosis or Bartonella.
My insurance only covers 30 days so after the 30 days I will have to make a decision whether to pay the next 30 out of pocket or not. Did you see some improvement after 30 days??
Posts: 306 | From NY | Registered: Sep 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Hate to say it, but you've got the wrong LLMD if he refuses to tx coinfections based on symptoms. That's dangerous to your recovery. Sounds like you should find someone who will (but until then, go with what you have).
After the 30 days, often if you pay put of pocket for the IV, then submit it to insurance (Infuserve America will do that for you), they will pay it under major medical. I can't promise that that will work for you, but it has for many.
Of course, if you ask the insurance company ahead of time, they will say no about that; they don't want you to know that.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I agree you need to treat co-infections as well.
I'm starting my 3rd month of rocephin.
First month most of my GI symptoms resolved. IBS, pain, constipation, but no improvement in brain fog, confusion, neck pain.
Second month added in Rifampin and Plaq and seem to on some days think clearer but not a big improvement yet.
Third month gonna add in Flagyl or Tindi per LLMD and see what that does. I did that previous with orals and it was the worst herx I ever had. I couldn't tolerate the cyst-busters but I want to try it again. It might be the ticket.
Infuserve America as of yesterday is still doing a IV push 28 day kit which includes a syringe pump and all supplies for 646.15 including shipping.
Still expensive but the best deal out there. See if ins. will reimburse some??
hth
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
I agree, you need to treat coinfections. My LLMD diagnosed me clinically for coinfections. They do not test for all the strains of co's so you can have them and not test positive.
Also, after 30 days, why not change over to high-dose combos of meds that don't need prior authorization? Many get better on orals. Thirty days of rocephin gives you a good start, switch to high dose orals to finish the job.
But look for someone who will treat those coinfections.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It really depends how long you've been sick. If it's a new infection, you will require less treatment. It also depends on how virulent a strain of Lyme you have.
Some people require several months. My husband was on IV Rocephin for 7 months and improved dramatically. However when he stopped, he did not follow up with any orals or any treatment. He had also been sick for over ten years and his initial infection was only treated for two weeks, after being undiagnosed for months.
I think he stopped the Rocephin a little bit too soon and needed to follow up with an oral regimen. He did okay for a couple months but slowly started to backslide.
His issues are primarily neuro lyme, with fatigue and some physical symptoms, too. Now he is in full on relapse mode and is almost like an early Alzheimer's patient. Unfortunately, one of his primary symptoms (or maybe it's just him) is lack of insight into his condition! He does not want to go back into treatment even though at this point I have to turn the stove off at least once a day because he has left it on.
This is an extreme case; he was badly infected, undiagnosed for months, severely undertreated, and it was 9 years before he got to an LLD. Now I think he needs very long term IV treatment, which was extremely effective when he was on it.
My point is, there is no cookie cutter answer as to how long you need to be on IV Rocephin. On the other hand, my 21 year old son, with congenital and Chronic lyme from a tick bite, was on Rocephin for about 5 months and didn't even take it every day, and he is in full remission now. He did follow up with orals and he did treat coinfections. But he was pretty consistently noncompliant about his meds. And he was very, very sick. Despite that, he's been off all meds for 3 months now with no signs of relapse.
I wish you the best, perhaps knowing a bit more about how long you've been sick, etc will help.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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quote:Originally posted by onbam: [QB] A believe most relapse after that therapy...that's what the studies show, anyway.
I've seen that to be true here over the past 10 yrs. If you do that, you'd have to be sure to follow it up with orals and include plenty of cystbusters.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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