I am in serious need of opinions and experiences, I am to begin IV Therapy in 1 week and still have concerns IF this how I should begin my treatment...I'll be as brief as possible.
My LLMD has prescribed the following for Lyme/Bart, Clinical DX supported by 12 Bands either + or IND on Igenex WB - painful neuro symptoms for 1.5 years including(neuropathy/tinnitus/insomnia) preceeded by vague sx's for at least 5 years.
6 Weeks of IV Rocephen (4G/Day 4 Days PER Week) 1500 MG Flagyl Beginning Week 2 (14 Days On/7 off etc) 500 MG Azithromycin on the Fifth Week.
I have had NO ABX treatment to this point.
Obviously I NEED my medicine to reach my nervous system since my sx's seem to emminate from it.
Is there ANYONE who has beaten neuro sx's (Neuropathy or Nerve Pain/tinnitus/insomnia/minor brain fog/twitching) with Oral Meds? Which ones, dose, duration?
Thank you with all my heart for trying to help to those who have 'been there'! Private messages are fine too!
Take Care, MBB3 Posts: 247 | From The Country | Registered: Oct 2007
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posted
I have been treating with nothing but orals. My insomnia still comes and goes, but my mental confusion, inability to read/write well, disorientation, etc. has gotten better.
I have been on a mixture of meds and have switched them around. At one point we were talking about IV, but we used orals first. As it ended up, my CNS symptoms were pretty much gone by the time we were supposed to start IV.
Different LLMD's do things differently, and differently for each patient. What worked right for me, might not be right for you.
posted
Sounds aggressive for sure! Not suggesting its a bad thing but I was started with a build up slower than that. I dont know!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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ByronSBell 2007
Unregistered
posted
IV's if you want a better and quicker recovery, if yu have neuro stuff going on then IV is a must.
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posted
IMHO, with neuro symptoms, IV seems more effective. Plus, do you really want to spend many extra months on orals, suffering, if you can get IV up front and get it over with faster?
I've been on & off IV due to financial/insurance issues. I always showed the most progress on IV. But then, I've had Lyme for maybe 20 years (initially diagnosed and treated 15 years ago, but relapsed 3 years ago).
In hindsight, I think if I'd had sufficient IV abx up front for my neuro issues, I'd have stayed in remission longer, and would have maybe avoided disability.
Posts: 168 | From Delaware | Registered: Aug 2005
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daise
Unregistered
posted
Hi mbb3!
Yes, IV Rocephen is very good for heavy neuro and cognitive. However, only 6 weeks? Is that the most your insurance will pay for?
Do the people you're dealing with at your insurance company realize that the cost of Rocephen has drastically fallen?
Here's a link to the cost of generic Rocephen (it's actually a red flagged "sticky" near the top of the Medical Forum):
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Personally I would do IV and IM the joy of this is that if you have a PICC or Hickman in you can also do IV Glutathione 3 times per week for any herx and to help with any Neuro problems. Again consider using IV meds to treat Bart at the beginning (IV Rifampacin(Rif must be used with another AB)/IV Levaquin/IV Teicoplanin) as if you have co-nfections especially Bart you need to treat that at the beginning.
Then move on to Lyme and cyst buster rotating cyst busters like Tinidazole or Flagyl with Ceftriaxone
Thanks so much for trying to help with this decision...cannot give enough appreciation!
To Daise: You mentioned it being a good thing that orals are being introduced after the IV to prevent bad herx? Do people tend to not herx on IV Rocephen?
I realize that at least one of my rx orals is a cyst buster, I thought it was being introduced at week 2 of IV to bust mobilized cysts or newly formed cysts, is this correct?
Also, I guess the 6 week duration was because of 'wait and see' approach? I have NO insurance, so this is ALL out of pocket! I am aware of the $412 Rocephen thread, but my DR wants this monitored by professionals, hence a weekly PIV insertion.
For reference, I will be paying $60 per day for IV drug and ALL supplies which equals $240 week via IV pump method/4G per day/4Days per week .
Finally, what's the jury on treating Lyme before bart? Still confused about this? It seems my DR may not being treating Bart first? Will Bart be battled with IV Roc/Azithro/Flagyl?
Thanks for any help, Take Care, MBB3 Posts: 247 | From The Country | Registered: Oct 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have had severe neuro issues. I WANTED IV and two LLMD's would not put me on it until we "tried orals" first.
I have progressed in the last two years mostly on Amoxi/Biaxin now Bicilin/Biaxin.
Looking back, it may have been a smart move, orals have been VERY hard for me to tolerate w/incredible herxing. I probably couldn't have handled IV well because I herx so hard probably due to a large spirochete load (I am guessing).
I also have had Bart, Ehrlichia and active viral co-infections. Both LLMD's believe viral issues are also responsible for much of the nuero pain I have experienced.
You could ask to try orals first, but I would expect a long term committment as orals are not an overnight success usually, but then I have heard IV I guess may not be either. Everyone is different.
EDIT : AZITRO/FLAGYL Kill everything except babs. I just talked about this combo w/my LLMD a few days ago. This combo alone is tough. I agree w/the post below - Hold onto your hat! I have done Azithro - very rough my son did Flagyl and only made it two weeks. This combo though has been known to get people well...without IV.
posted
All I can say is...hold on to your hat!!! That's one heck of a plan!
I'm on flagyl only 750 mg per day, and WOW! It has been one heck of a herx.
I'm also on Zithromax and when I first started on it, I herxed like crazy! You might want to slowly ramp up the Zith and Flagyl.
I started with only 250mg 1x/day for many days and then slowly added in the two other doses. It was a really rough herx at first, but has gotten better.
My LLMD put me on the flagyl to "knock down the lyme load" a little bit before we start IV.
I will have been on flagyl about a month before I start IV Rocephin which I start in a few days.
Posts: 215 | From Student | Registered: Oct 2007
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daise
Unregistered
posted
Hi mbb3!
quote: Here's your reply: To Daise: You mentioned it being a good thing that orals are being introduced after the IV to prevent bad herx? Do people tend to not herx on IV Rocephen?
You misunderstood. It very much looked like your doc wanted to spare you a crushing first time herx, by giving you IV Rocephen and a few weeks later (or whatever) you'd start biaxin.
That's what my LLMD did for me--and I was grateful, because that first herx on IV Rocephen is a doozy! My second herx overlapped my first.
The whole arena of cyst busters is very confusing and no one has all the answers as to what works--but yes, flagyl is a cyst buster.
As far as treating bart first or Lyme or babs--it just depends. Everyone presents differently to their LLMD as far as what signs and symptoms are worse.
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