posted
We ended up switching when I just wasn't seeing much of a change on oral antibiotics. I was getting better on them but it was very, very slowly, it was hard to really see a change from month to month.
I did orals for 6 months, IV for 3, then back to orals for the last 4. I'm down to two pesky symptoms now!
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I think my doc would have prescribed I.V., but I had told him that wasn't in the cards (being a musician with no insurance at the time...). So he prescribed combinations of orals at very high doses. It took 2 years, but I did get over it! It was hard on my stomach, however. Just as well; I've had my share of IVs from being in a coma due to head injury, so finding good veins would have been pretty hard.
If you have the insurance to cover it, IV is probably better.
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
what IV protocols do most people's docs prescribe?
Posts: 3528 | From US | Registered: Apr 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I made no progress on orals and changed LLMD's and he insisted long term IV
I am on Rocephin with IV Glutathione
Was on IV Rifadin but am presently on malarone so stopped that as you cant take rif with malarone
Then I will probably be on IV Clindamycin and oral quinie sulphate with rocephin
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
In my particular case, I had tried to treat lyme, bart, babs for 20 months on orals. I was making very good headway around the 14th month to the point that I went out traveling, even out of the country.
I thought things were not perfect, but I could have lived like that with just a day or two a week knocking me down for the count but then I was back up and going.
But about 2 or 3 months in, things went totally haywire neurologically, even though I had NOT stopped the orals yet.
Had more testing done and found more co's and with such a rapid decline, my first LLMD got me in to a LLMD that he said could be more aggressive.
He ran a bunch of tests too and the next thing I knew, I had a port.
As far as IV meds, I'm still new at it since I'm just beginning my third month, but I'm on IV Rocephin and IV Flagyl along with various other oral abx.
It's been kicking butt and I've definitely felt better.
My biggest concern is that since it's not being covered by insurance and all out of pocket (which isn't cheap)....it's bad enough I'm herxing all over the place, but I don't like the stories of how people fall right back where they were AFTER the IV's.
Are there any out there that have gone the IV route and still feeling it was the right answer? Any tidbits on the side of how to be one of the success stories instead of one that falls back where they started?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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CD57
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Member # 11749
posted
Cathy--what does your LLMD say when you ask him about this?
Posts: 3528 | From US | Registered: Apr 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
CD57,
I just responded to your PM regarding this, but in a nutshell, it is NOT my LLMD that is making comment regarding the IV and relapsing.
I'm sure he's seen MUCH more getting better or I doubt he would keep doing it. I just have been tracking down the ones that had cheered me on to do the IV since it was working so well for them, so when you follow up, it isn't always roses.
So that is why I was looking to hear about the positive sides as well.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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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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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
The only reason for relapse is if your co-infections are not treated and if you have not used and intracellular and cyst buster towards the end of IV.
A relapse means you have an active infection(s) you therefore continue to treat or retreat until they are gone.
Rocepin is not a miracle drug just a necessary drug for many with neuro envolvement etc.
1. If you have been ill for a while 2. If your CD-57 is low 3. If you have more than 1 infection 4. If you have vasculitus 5. If you have alot of fibrin 6. If you don't detox well 7. If you have alot of inflammation
You don't have to necesarily have all of these to get IV's but if you have several of them, IV's are a must!
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posted
I was on IV's for 6 months and insurance denied them any further! It was IV Zithromax! I have been off of them since July 15th I have had very bad experiences with my face a severe swelling and blees palsy, which i will attach the pictures for you to see! I then started the IV's last Monday and the imrpovement is unbelieveable!!!! It happened in a few days!! So my point is if you have a lot of neurological symptoms like I do then that is the way to go!!
Ok I cannot figure out how to post the pictures but my point is that the IV's helped within a matter of days! I went to the Dr's today to get my meds and have my bandage changed and they could not believe the difference!!!
Of any one knows how to post pictures please let me know!!!!!
Thanks, Onmway
Posts: 131 | From Georgia | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Hmmmmm...sounds like me. I've been wondering a lot about IV.
quote:Originally posted by ByronSBell 2007: The requirements my LLMD has for IV's is
1. If you have been ill for a while 2. If your CD-57 is low 3. If you have more than 1 infection 4. If you have vasculitus 5. If you have alot of fibrin 6. If you don't detox well 7. If you have alot of inflammation
You don't have to necesarily have all of these to get IV's but if you have several of them, IV's are a must!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I would think gut problems would be another reason to do IV abx vs. oral. This is why I was on IV abx off & on for 2 years...can't swallow pills, and initially also couldn't eat anything. Still struggle to eat, and oral abx really mess with my stomach.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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