posted
My doctor has been trying to convince me to do IV abx for about 2 years now. I initially read some bad reports on this when I was heavily researching everything. Even that some people felt great on the IV abx but as soon as they were off they got even sicker?
For 2 years now I've tried oral abx, diet, exercise, salt/c etc. I've had some months that I felt 90% better but the lyme always flares back up and I don't remain well for long. I'm in an awful flare now and nothing seems to help. Should I try the IV abx? Dotor suggesting heavy dose of rocephin MWF and Flagyl on weekends. Thanks
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
Well, I can't tell you what the end result is going to be, but what I can tell you is that starting Rocephin sure has stirred things up for me like nothing else has. I'm only three weeks into it though and haven't gotten past the herxing stage yet...
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
I just finished 8 weeks of IV. I would have done 4 more, but my insurance was refusing payment.
I herxed very hard with IV. Felt HORRIBLE!! Everything was increased, and the IV gave me an upset stomach and diarrhea (which has not resolved yet 3 weeks post IV).
I can not tell you that I feel any better than I did before the IV. My fatigue may be slightly improved, but not much else.
I wonder what would have happened if i continued??
-------------------- I have Lyme - but it doesn't have me. Posts: 70 | From ohio | Registered: Sep 2011
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posted
I can't tell you but I am on the verge of trying IV as well. I finally have seen an llmd and think I will have it covered. Not sure for how long. I am wondering this too.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Insurance is usually the big reason.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son did IV rocephin and it changed his life. He was able to get back to school and resume his life. He did 10 months and I wish we would have done a couple more but his PICC cracked and he was tired of it at age 15.
My infection is 30 years old so IV is a possibility for me. I am leaning towards IM bicillin this summer.
Go back and search old posts. Maybe people are getting tired of posting about IV.
-------------------- 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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posted
My son and I had great success with once a week IV's of 500 mg of zithromax. We each did it for about three months, or 12 infusions in all.
Posts: 43 | From Florida | Registered: Jun 2010
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posted
I have only seen improvement on IVs. Oral antibiotics were simply not strong enough for me. Side-effects seem to be amplified, but so do results.
If you were undiagnosed for many years, I think it is a good idea. It is an adjustment, but it is worth it in the long run.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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gmb
Unregistered
posted
I'm on week 20 of IV Rocephin and Zith, then added in Mepron on week 9, and Bactrim DS three weeks ago. I started IV with 2 gr per day, then changed to 2 gr twice a day for four days on and three off.
I've seen some improvements and some flare ups, and symptoms are starting to have a more define cycle. Every so often I see some improvements on a couple of days, then get slammed with another die-off.
Lately the flares are less severe so I guess there are improvements.
So if Babs cycle is 7 days or 14 days, and Lyme cycle is 28 to 30 days, what happens on a full moon? (rhetorical question - no sleep).
Been in treatment for just over two years. LLMD in year one was not agressive, so switched to new LLMD.
Overall all my initial arthritic type joint pain and stiffness has resolved. Now I am having mostly neuro and GI issues.
I guess everyone reacts differently. So far the only ABX that I had a bad reaction to was Augmentin. The PICC line has not caused any problems except for feeling like I'm on a short leash. Hope all this will be worth it.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had 6 mos of IV Rocephin with no change. i also had 4 yrs of oral abx. Antiparasitic herbs and salt/c is what got me on the road to recovery.
If you haven't treated for parasites, it might be a good idea to do so. Salt/c is something you have to stay on to have success. How high a dose were you on and for how long?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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gmb
Unregistered
posted
Gael,
I have parasites and FL1953 on my list of issues for next LLMD appointment. I tried Salt/C for a few weeks just before seeing my first LLMD.
I have history high BP, but it's under control with Atenolol. But during a routin visit with my PCP while I was experimenting with Salt/C, my BP was quite elevated over my norm, and he added in another script to help out.
Six months later I dropped the second Rx and have been fine since.
IV Rocephin dose is 2 gr twice a day for four days, then 3 days off. Zith, Mepron, Bactrim twice a day all week.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
gmb,
According to Dr. K., getting rid of parasites FIRST and Lyme and co SECOND is key to getting well. The reason being is that the parasites are protecting the bacteria and harder to get at.
Maybe going after the parasites first and then hitting the other infections later would help. Elevated b/p can be caused by the infection itself.
Perhaps after you get the infections under control your b/p will come down and then you could try starting with low dose salt/c. Just thoughts, Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Does everyone presumably have parasites? Do they Coe from the tick?
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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