CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hello, I was just curious what people's experiences were with their doctor's justifications for moving from orals to IV. Or maybe starting with IV? What made your docs decide to put you on IV, if you went that route?
Posts: 3528 | From US | Registered: Apr 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
well gee....after six months of both oral
ammoxycillin and doxicycline and getting my symptoms down to three days a month....
The brilliant DUCKS that initially refused me IV antibiotics....in favor of orals....
TOLD ME I WAS CURED!.....yea!
However one month and a half later.....declining all the way....
I was no longer IGG positive and practically out of my mind with encephalitis and panic attacks
and pain and well,what have you.....
That they finally consulted with a REAL DOCTOR....at least where lyme is concerned,an LLMD....
because I was now suffering from an active infection,according to the western blot that
came back IGM positive.....even though it conflicted with one sent at the same time to QUEST labs....
I should get at least one month of IV Ceftriaxone....
Thank GOD.....so whenever they let me out of the lockup looney bin,at a local hospital....
cuz the dumn duck did'nt realize that lyme sufferers
have panic attacks NOT similar in durration then normal folks.....normal folks that have panic attacks?????
And that raising the dossage of prozak was counter-productive in lyme infected persons....
and oh yeah,...nothing showed up on a "CAT SCAN"????
It scared the living crap out of the dang ducks and they gave me,what I told them I thought,
I needed approximately seven and one half months earlier....to wit.....IV antibiotics....
hope that answers your question sufficiently!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
At the start of treatment I was hospitalised for 3 1/2 months after being mis diagnosed for 7 years and was so unwell I was on IV for 4-5 months then they tried me on bicillin and orals although I could not tollerate ny orals and got worse.
Switched LLMD's to Dr H as you know and after intense detox he said I needed IV, I could only tollerate 1/4 pill of any oral as it literally rocked my CNS but I can tollerate Massive IV dosages (presently on IV Rocephin IV Rifamin and IV Glutathion) - again he said he see's this in a subset of patients.
posted
I was only on orals for a little over 2 months before the doc decided to put me on IV. Bear in mind, this was after going undx'd for 30 years.
Started treatment this past March with Doxy and Plaquenil. Constant nausea, stomach cramping, frequent vomiting.
Switched over to Mino, Malarone, and Plaquenil. This triggered daily migraines, olfactory hallucinations, and constant dizziness (could hardly walk). Continued nausea, stomach cramping, and frequent vomiting.
They had also added Levaquin to this, but I couldn't take it. It came back up almost immediately.
Tried a few other combinations which I was able to tolerate somewhat better, but my neuro symptoms were getting exponentially worse all through this time.
In May, I developed seizure-like events and tremors (just got an EEG done on Friday - results not back yet).
That's when they decided to put me on IV. Had the picc inserted and started IV Rocephin in June (took a few weeks to get ins. approval).
After only a week on IV Rocephin (and a huge neuro herx), my light sensitivity went away and my parasthesias went away almost completely.
Unfortunately, there was a month-long interruption in the IV treatment due to a combination of elevated liver levels and insurance company poopy-headedness.
I finally started back on the Rocephin on the 19th of this month, had a moderate neuro herx, and am feeling somewhat better. I'm also on oral Malarone, Zith and Plaquenil, which my stomach is able to tolerate.
While I don't like having this thing in my arm (have had a phobia about it since starting to research lyme treatment and it cramps my style), I'll fight tooth and nail to keep both it and the IV abx.
I really do feel like they're making a major difference in my quality of life.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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ByronSBell 2007
Unregistered
posted
After 1.5 years of orals I wasn't getting any better...
I also later tested positive for Bart, Myco, strep, mono, and more. I also hade severe vasculitus (from the bartonella) diagnosed by a SPECT Scan.... there was no way I could get well on orals.
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Four years, on my 3rd LLMD, no IVs yet, but I am pushing for them now.
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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posted
Last September my LLMD was preparing me for the possibility of IV that we would start in Jan. He was concerned that I had so many cognitive issues that weren't getting better.
I had felt better on Cipro ... clear head .... so he tried Levaquin first.
By the time I went in in Jan. I already felt better, my head was clear, so I never started the IV. I'm still plugging away in treatment with orals, but have a significantly better quality of life than a year ago.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I was put on IV after 1 year of orals. I did orals for the first 6 months and thought I was fully resolved, went off and relapsed, then went back on orals (different abx rotating mind you) and plateaued with many cns issues.
My doc said look it's been 1 year and you're still having cognitive issues- IV rocephin crosses the blood brain barrier better.
And wow the herx was intense, but now I'm at 7 weeks with 2 more to go on this course and I'm DRIVING, WORKING and PARENTING!!@!!!!
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I have been on 20 months of orals and was actually making good headway, but somewhere along the way, I took a major tumble and lost ground over a couple months time.
My LLMD suggested I see one of the more aggressive and well known LLMD's so I went to see him and at the first appointment, after seeing all my records and all the questions and testing... he said IV's it was.
I had the port installed on Friday and would have already started IV rocephin, but had an insurance issue, so since it looks like it's out of pocket, probably won't get started until this week coming up.
I imagine if I had gone to this doctor sooner, I would have been on IV's sooner, but I don't think there is any set time limit and each doctor seems to follow different standards.
Good luck to you no matter which way your path goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Curious--do these docs Rxing IV give you any kind of a timeline as to how long you'll be on it? And do you just do IV Rosephin or others too?
Posts: 3528 | From US | Registered: Apr 2007
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posted
CD57, My doc said 4 months, but that really depends on the insurance company. We can't afford to pay out of pocket for the meds.
I'm just on Rocephin. Doc had me try IV glutathione, but I'm allergic to it.
I called the company that sells it and they're looking into the source the glutathione came from.
If it's an animal source, it could explain my reaction (I'm allergic to beef and pork).
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
For me it is reviewed every 4 months and then the IV is continued or switched but alwas normally 2 IV AB's with IV glutathione which clears my herx now in hours (used to be weeks) I understand it can be anywhere from 6 months to 18 months and then sometimes you may still need to cycle back on them.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Dr. F at Columbia suggested IV rocephin initially due to the CNS involvement that was going on with me. It helped substantially (after 4 1/2 months) and I was on IV rocephin for a total of 6 months. I did not get totally well.
We now know that I had active infection with HHV-6, HHV-7 and enterovirus going on during that time. We know this because of a subsequent IHC testing on tissue that was taken from me PRIOR to being put on the rocephin.
I would encourage you, if you are considering IV to FIRST get yourself tested for HHV-6, enterovirus, EBV, mycoplasma pneumonai and Chlamydia Pneumonia. These pathogens cause the same symptoms as lyme. IV rocephin will not help with the viruses. And it's expensive and has risks. If you aren't getting well on antibiotics, see if these other pathogens are your problem.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
CD57 - your past antibiotic regime would have already covered mycoplasma pneumonai and Chlamydia Pneumonia and your LLMD is so knowledgeble he would have suggested valtrex, Ganciclovir or a similar antiviral if he thought or knew you had HHV-6 or HHV-7 as he always covers all viral issues during treatment.
Speak with him if you have concerns regarding your treatment as he will be the one to get you better - too many posts will confuse you and cause you further anxiety.
Again, speak to Dr H and discuss IV and viral options if you have not already.
X Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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