To IV or not IV - your opinions sought

[seekinganswers]

I have neuropathy - tingling in hands and feet - and am considering IV treatment.

Here's the thing:

Of course I;d like to feel better with it. I'd go on it even if I didn't feel any improvements - just to try.

But if there is an actual risk that because of this treatment i'd feel WORSE - ie that it excacerbates symptoms, expands the symptoms, etc., then in NO WAY do I want to do this.

So I'd love to hear from anyone with experience here. Did IV make any improvements? Did it cause anyone to suffer more?

THANK YOU.

[nyxie63]

Sorry if this seems rather disjointed. Brain's not working all that well right now.

I tend to react badly to most meds and my dr considers me to be a "problem child". Your mileage may vary and, like the majority of people, IV abx may be of great benefit to you.

I was on IV Rocephin for 34 days (out of 2-1/2 months with a picc - long story). While it did get rid of my photosensitivity and helped me to focus a bit more, it markedly accentuated my other neuro symptoms. I also had temporary relief from the parasthesias (all 4 extremities).

I developed severe right-sided pain from my lower back down. This has died down somewhat since stopping the Rocephin and has been replaced by entire right-sided weakness (mild) and lack of coordination on that side. The tremor in my right hand is more constant and intense. How did I know I was herxing? Bells palsy showed up! Fortunately, that only lasted for about a day or so. I still have residual loss of sensation on both sides of my face. The parasthesias came back after a few weeks off the Rocephin.

Unfortunately, it's difficult to tell which resulting symptoms are due to the Rocephin, due to discontinuing it (rebound effect?), and/or what's just my body's natural weirdness.

As much as I hated having the picc (phobic from day one about it), I would have preferred to stay on the Rocephin to see if I could squeeze any more benefits out of it. Unfortunately, my insurance company had a different idea and cut off coverage for the IV.

While I'm sure my story might sound like a nightmare, it isn't really. I don't necessarily buy into the philosophy of "if the med dosn't make you worse, it isn't working". My symptoms are just something I have to deal with and consider it a fair tradeoff.

Do I regret going on the Rocephin? Not at all. It's nice to be able to wear my regular glasses again. Driving at night with shades on was scary. It's also nice to have part of my brain back.

You might want to check with other boards as well and see how other people have benefited from the IV abx.

Wishing you the best, no matter which way you decide.

[cobweb2]

Flip Side-
I was on IV rocephin for 8 months. I had no problems with the picc beyond irritation. Nothing major.

It's a little weird to be toting a picc line- but it's a great conversation piece and really impresses people as to the seriousness of Lyme Disease.

I had the picc pulled about last year at this time- and any uncomfortable sensations related to it are fading in my memory.

IV Rocephin helped me a great deal in clearing my head up-but it only took me so far-and was discontinued when I seemed to plateau.

Oral Rifampin for Bart boosted me the rest of the way to feeling good.

I was scared initially about posible side effects of IV, and grateful that I made it out alive!

It became clear that I needed the IV after I had a spect scan of my brain done- and my insurance company authorized 999 days of IV! I hardly paid anything.

Hard choice. Orals do work- eventually.

Thumbs up for me on IV.

[LymeEnigma]

A lot of my numbness ended up being caused, at least from what I could, tell by the babesia. Oral treatment (mepron/zithromax/plaquenil) worked well for me, but we all do seem to react differently to different medications.

Has your doctor ruled out co-infections?

[seekinganswers]

Thanks Nyxie, Cobweb and LymeEnigma.
Re: testing for other co-infections -
Dr #1 says I have bartonella - borderline titration according to Igenex, and positive bartonella from Fry Labs. (negative for babesia and others)

However 3 subsequent doctors think that bartonella diganosis is bogus -- first saying "borderline" is really negative, otherwise they would change their threshold, and second saying that the Fry labs photo looks like artifact and is basically garbage! Also 2 subsequent tests for bartonella are negative (note these are the basic bartonella tests - I don't really understand whether Fry and Igenex are testing for something different, e.g., "bartonella like organisms" that may not turn up in standard lab settings??)

And so the mystery continues as to what the heck I even have. Even the Lyme diagnosis is up in the air.

My original Igenex test was CDC positive on IgM (not IgG). Subsequent tests by Stoneybrook were all negative (only band 41 turned up). I talked with Dr. C's office in westchester who said igenex does have more false positives than others.
Of course the subsequent tests came 2 months after starting antibiotics so I don't know whether antibodies can be masked that quickly. Two ID doctors I've spoken with say NO - you'd still see the antibodies if you had Lyme.

I've had these parasthesias since Nov '06 now, after a trip to southeast asia. My new theory is that perhaps I was bitten there by something yet unrecognized here (maybe hence the "41" band which is not lyme specific but a flagella, as I understand it, which could be part of any foreign organism?).

I've now been on antibiotics for 3 months and I can't say I've noticed a material improvement in the buzzing symptoms. Agh.

[LymeEnigma]

Check out the following links:

lymeenigma.proboards104.com/index.cgi?action=display&board=treatment&thread=382&page=1

lymeenigma.proboards104.com/index.cgi?action=display&board=studies&thread=561&page=1

I wish there was more information on the different labs; unfortunately, it seems as though one is taking a gamble no matter which testing facility one chooses. The tests just don't seem reliable, and there is definitely a chance of false results, positive and negative, depending on the test used and how it is interpreted.

I have been overdoing it as of late, not listening to my body's cries for much, needed break, and the tingling has returned to my arms and hands; this morning I experienced neuropathy pain in my hand for the first time. I have also fallen back into the fog, which is extremely frustrating. I'm not willing to jump back into the antibiotics, as of yet; I've had smaller flares in the recent past that have resolved on their own, and there is no reason for me to believe, at this point, that this won't prove cyclic and self-resolving.

I truly do believe that Bb trigger autoimmune problems in certain people, and also that the bacteria may be impossible to eradicate with current treatments. You might find the following articles on interest:

Effects of Penicillin, Ceftriaxone, and Doxycycline on
Morphology of Borrelia burgdorferi: aac.asm.org/cgi/reprint/39/5/1127

Studies on the Cystic Form
of Borrelia burgdorferi: www.lymenet.de/literatur/LDCysts.pdf

[seekinganswers]

So sorry LymeEngima to hear you're not feeling well. I'm hoping this is like your other finite flair-ups...

I'm curious to know whether an Igenex result that is so clearly positive (IgM +31, +34, , +39, +41 ... the first three are all Bb specific) could really be a false positive?

When then a stonybrook result is only +41 ?

Should i be thinking it's lyme, or it's not lyme? my symptoms are "lyme-like" but it's SO HARD TO KNOW.

[nyxie63]

Seeking,
I'm in the same boat - doubt, doubt, doubt. To add further fuel to the fire, my positive Igenex IgM (the only positive lyme test I've had so far) came back with bands 18 and 83-93. Didn't even get a stinkin' +41 band! The problem is 18 cross-reacts with Brucella and C.pneumonia. 93 cross-reacts with Leptospirosis. So could those be part of the picture, either including or excluding lyme? Hmmmm.....

While I haven't found anything that cross-reacts with band 34 (yet), Brucella cross reacts with band 31, B.hermsii can cross-react with band 39 (and can also be read as band 34 if the tech is sloppy), and Rickettesia may be read as bands 31 and 39 if the reading is inaccurate.

LE was nice enough to put together a "cheat sheet" of sorts for WB cross reactivity and potential misreadings, about 1/3 of the way down the page.

lymeenigma.proboards104.com/index.cgi?board=treatment&action=display&thread=382&page=2#3428

Glad to see you asking these questions. They need to be asked.

[LymeEnigma]

What is frustrating and confusing is, like Nyxie noted, the fact that there are so many cross-reactive bands, even in those that are considered "Lyme-specific."

I look at the bands that came up positive in my Igenex WB (IgM: 23-25 IND, 30++, 39 IND, 41 IND, 66+, 83-93 IND; IgM 30++, 31 IND, 34+, 41+) and I think to myself, "this could very well be Bb ... but it could also be a combination of other pathogens that, together, create a picture that looks like Lyme." ALSO, band 41 is the only band that came up positive on my Quest WB (follow-up on a positive ELISA).

I'm doing better. Still very, very tired, but the fog has lifted enough for me to be able to do what I need to do during the day, and the neuropathy has left completely for the time being (knock on wood).