posted
I am confused over IV vs IM Vs oral therapy for neuro lyme. I am looking to connect with any patient of Dr R in NYC..he is suppose to be the ultimate in llmd's and I was just diagnosed by him..heading for iv therapy for minimum of 6 mths???undecided ..want to link up wiht his patients and see what they chose...I am confused over taking his IV treatment vs IM shots or just pills for neuro lyme. email is [email protected] thank ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
UP? does that mean choose IV IM or oral abx?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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momlyme
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posted
No, up means this post got buried on page too and Lymetoo is bumping you up so you will get an answer. No worries. Someone will be along.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Abxnomore
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posted
While everyone will probably have a different experience and story to share and I hope they will chime in and offer their experiences, in general IV goes directly into the blood stream and is most effective in passing the blood brain barrier to allow ABX to enter the brain and reach areas that are often difficult for oral ABX to reach thou some oral ABX are more effective at doing this than others.
IM shots IMO are the next most effective, as with IV, they by pass the stomach and the ABX are not eroded by stomach acid.
Orals can be very effective especially in combination with other oral ABX but very high doses are usually needed to be as effective as IV. Many patients have more stomach and GI issues with oral ABX than with IV or IM shots. This is just a brief overview. As I mentioned, each individual will have a different experience.
Lyme treatment, unfortunately, is never a one size fits all. It's mostly trial and error finding what works best for the individual and the symptoms they manifest. When one approach no longer works then one usually moves on to other one. I hope this helps a bit and that others will come along and share their experiences.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
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posted
Found this on page two, again.
Surely some one here can share their experiences and opinions on IV vs. orals and IM shots?
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momlyme
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posted
I wish I could help more on this. My son did not tolerate abx well at all. Kept getting worse on a steady progression with orals. No herx - where things would get worse and then better. Just bad all the time.
LLMD put him on a picc line and he did have herxes and seemed to have some improvement. WBC and ANC dropped so low he has to stop abx all together.
If you can tolerate abx. and you have tried orals and they are not working... IV (picc line) is the way to go... from home - I wouldn't want to do it at a doctor's office. Bypasses the stomach which is a big deal.
I hope you find what works for you.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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feelfit
Frequent Contributor (1K+ posts)
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posted
Annie,
I have done all three. I'm not the greatest one to be commenting because I have had little response to any lyme treatment, i.e. i'm still very sick after 3+ years of treatment.
I had this illness for at least 18 years before being diagnosed though so, my response may be slow.
Abxnomore has given you a good synopsis.
That being said, the little results that I have seen have come via IV meds. My first IV 3 years ago was Rocephin. It totally eliminated the bakers cysts on the back of my knees and my joints felt waaaaay better.
My second round of IV therapy yielded little result
I recently finished a third round and it helped the most (IV Invanz). I have elimininated head pressure and most of my excruciating head pain. Nothing else has ever touched this.
IM therapy, for me, was not helpful. though it is said to be just as or almost as effective as IV therapy. I was only on one shot of bicillin per week, probably too low of a dose.
I have seen no benefit from oral antibiotics.
I have seen benefit from anti-parisitics and anti-malarials...Mepron, malarone.
and so far, i am not able to tolerate bartonella treatment. (I must be loaded with it). Oral antibiotics.
Each person is unique. Your doctor is probably basing his decision to go with IV therapy based on your 'two years of degenerative dizziness'.
that is a neurological problem that has been long standing. IV therapy has the best chance to penetrate the blood brain barrier.
don't know if this helps or makes much sense to you..thoughts a bit muddled this a.m.
Heather has given you good info too.
Posts: 3975 | From usa | Registered: Aug 2007
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timaca
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posted
IV antibiotics is expensive and has significant risks. I would try orals first. I would also check to see if viruses (Coxsackie B, HHV-6, EBV) are part of your problem.
I did do IVs for 6 1/2 months. It did help. But, I have also gained improvements from antiviral therapy.
Best, Timaca
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Abxnomore
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posted
Do you mean there are risks associated with the picc lines used to administer the IV ABX or that the risks are associated with the IV ABX itself and that oral ABX is safer? I'm a bit confused with what you said.
While there are risks associated with taking any medication, I have never experienced risks associated with the IV medication in and of itself. To the contrary, I had always found them to be far more effective and caused fewer stomach issues.
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timaca
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posted
There are risks associated with the picc line...they can become infected (mine did). It is also incredibly expensive with the meds, nursing support and labs which should be drawn weekly (if you are going to do it correctly).
If you have never tried orals, I would do that first. Then I'd test for viruses and treat those if you have them. Then, as a last approach, I'd do a picc line.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Abxnomore
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OK, that's now clear that the risks are associated with the mechanism by which the IV ABX are administered, not the IV ABX, per say, when comparing IV to orals or IM shots.
We pick up a host of pathogens with this illness and viruses always need to be addressed but each of us are different and also each LLMD will have a different approach, as to when they should be addressed in the course of Lyme treatment but I do agree with you that at some point they do need to be addressed.
I think the decision whether to begin with IV vs. orals is a very personal one and is also dependant upon whether or not one can afford it, if insurance will not cover it.
It also depends very much upon how sick the patient is and how long the illness has remained untreated.
In my case, I did long term IV at the outset and would do it that way again, if I had to. I received the maximum benefit for IV ABX.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I am positive for Epstein barr virus all of a sudden..Timaca does that mean it has to be treated first?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's some info on EBV: Here is a link to an article about chronic EBV infection:
posted
I haven't seen any improvement on orals so far, and my doc said that some people don't absorb antibiotics well intestinally.
If I'm still not improving when I see him again next month, we're going to do IM Bicillin shots. Like the IV, it's a different way to administer medication, and hopefully I absorb that more effectively.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Abxnomore
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posted
Not all oral ABX pass the blood brain barrier as effectively as others do and not everyone can handle the high doses necessary to try and accomplish it.
You are correct. Some people don't get good results from orals or sometimes not initially but after a good course of IV. We are all different and it also depends on how sick we are and how much neuro involvement we have.
I hope the IM shots prove better for you. They usually are very effective. In my experience I rate IV #1, IM #2 and high dose oral combos #3.
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