What does it take to have a doc try IV abx? Do you have to be really physically sick? Do you have to have been sick for years and years? Does IV help cognitive stuff. If I could get my memory and organization back I might just be able to be a better more informed self advocate!
Posted by Lymetoo (Member # 743) on :
Really depends upon the LLMD more than anything.
Posted by TF (Member # 14183) on :
Some docs will give IV after oral medications have failed. You have not been on high-dose oral meds in combination, so you don't really know at this point how you would respond to good oral therapy. Perhaps you would respond very, very well.
If the person's brain is totally shot--like they can't get to the office on their own, can't remember anything, their 4 year old is smarter than them, they seem to have Alzheimer's, or they are having seizures, most lyme docs would put that person on IV.
Those very physically sick also get put on IV--bedbound, wheelchair bound, etc.
Some lyme docs actually would put everyone on IV right off the bat if the person could afford it.
Some try IM (shots in the hip) before going to IV. 3 months of IM and no improvement, you get the IV.
Also, if you have had significant steroid use prior to treatment, you are then more likely to need IV to get well.
Another thing is that IV is not a magic bullet. If the doctor doesn't add other meds besides the IV rocephin, you often don't see any lasting improvement. And, if the dose of rocephin is half what it should be (which some docs do), then again you are wasting your money and time.
So, in the final analysis, as always, the doc's expertise is the key to getting a person well. You want the best lyme doc you can find--the one who has treated thousands of patients as sick or sicker than you.
Being on the east coast, you are not that far from some of the top docs in the nation. If you are able financially, get to a top notch lyme doctor and get rid of this horrendous disease.
Here's what Burrascano says about when to use IV:
PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:
1) Adults and children: I.V. therapy until clearly improved, with a 6 week minimum. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails. 2) Pregnancy: IV then oral therapy as above.
LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:
1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed." (page 20)
I had had several courses of steroids while being undiagnosed with Lyme. We think I have been sick at least 10 years. Lots of neuro issues and am seeing a glimpse of my brain coming back on Rocephin.
I actually have some clear moments. They don't last long but I have only been on Rocephin for two weeks.
Posted by jtma508 (Member # 34962) on :
For me my Dr. essentially gave me a choice. She decided that IV was indicated because of my neurological symptoms (although my MRI was clear). I was on IV ceftriaxone 2gm/daily for 30days. All my symptoms resolved (including the brain fog, white-noise, and fatigue) within 3-4days. There was a minor flare-up around week #2 but that was beaten down within a day or so.
From what my Dr. said, they'll go with IV if there are neurological indications (even without a definitive LP or MRI); the person has been sick for a long time; there are cardiac issues.
Posted by pme (Member # 31621) on :
I have been sick for four years. I have brain fog major numbness tingling and a host of other cognitive/neuro symptoms. I don't feel like messing around and being patient any more. I have awful fatigue as we all do. I think I present too well. I can't work now because of the neuro issues.
Called another llmd today. Got me in for October! Just wanted another opinion. No one has ever offered or discussed IV with me but from what I have read here I am a good candidate
Thank you
Posted by sbh93 (Member # 30429) on :
Once finally diagnosed, I did combo oral abx for nearly a year, changing combos every 3 months. I became somewhat functional, but no changes after about 5 months and even started to downslide again on third combo, though admittedly very slowly.
That's when I lost patience, like you say you have. Plus, my cousin who had lyme and got well/remission kept insisting I was spinning my wheels. Doc said we gave orals a shot, but yes I was a candidate for IV on both fronts, and am now on good treatment. It's working, and I am thankful, but it is not easy and it is not fast if you are very sick, coinfected, and long undertreated. You will need help managing and making sure to stick to the plan to a T.
First two weeks were very tough. I slept more than usual. I will say that in week 3 I felt like I'd woken up from a coma. I actually said that to a few people. I have had slow but steady progress since. Yesterday morning I woke up and started crying out of joy--actual joy, because I was wide awake and actually eager to start my day. I still have tons of symptoms, but the neuro and mood stuff has nearly gone and for that I am just thrilled.
Note that I am grateful I did oral abx first. The reason is that when I first was sick, even low dose oral abx really did me in--couldn't walk, which was an ability I hadn't lost to that point. I think the meds knocked down the "bacterial load" enough to strengthen me for iv. But I'm not a doctor, so I don't know anything.
Posted by pme (Member # 31621) on :
Do you think that drs take you more seriously if you look sick?
I feel like I should make sure I look like he.. The next time I go.
I just listed my main sx in another post and it is so clear that 90% are neuro. Those are debilitating too! Especially with a business that is on hold and young active children to be a parent to.
Are neuro sx more difficult to have taken seriously?
Posted by pme (Member # 31621) on :
Do you think that drs take you more seriously if you look sick?
I feel like I should make sure I look like he.. The next time I go.
I just listed my main sx in another post and it is so clear that 90% are neuro. Those are debilitating too! Especially with a business that is on hold and young active children to be a parent to.
Are neuro sx more difficult to have taken seriously?
Posted by seibertneurolyme (Member # 6416) on :
What does it take -- number one is a doc who will actually prescribe IV's. Number two is money -- insurance if you are lucky will only pay for 28 days. After that you are pretty much on your own.
Does it help -- in my opinion it is not worth the expense unless your doc treats for coinfections first or at the same time. Also need to have a really well informed doc and a well thought out plan for your entire treatment protocol. Including treatment for cysts and all coinfections -- regardless of test results.
Jumping into IV without knowing what infections you have can be financially disastrous as well as very frustrating. If you see improvement and then backslide within a week and the doc says no more IV's then you are between a rock and a hard place.
Rocephin is bacteriostatic for bartonella -- but not bacteriocidal.
IV's can be miraculous -- but as with orals just 1 or 2 months is generally not sufficient. 6 months maybe if you are lucky.
And if you have any complications from IV you can lose a doc really quickly.
After 11 years I am not sure what hubby really needs -- he has done orals and IV's and many other treatments. But the problem is finding a doc who can do whatever it takes.
I wish you luck with whatever course you pursue.
Bea Seibert
Posted by pme (Member # 31621) on :
Thank you so much. So many people say its all about the dr. Now it's time to find the right one. That way I don't have to try to figure this out on my own
Thank you again. I just need to be able to think again. I almost wish I worked in a field that was physical and required no thinking whatsoever.
I pray you and your loved ones find healing. Thanks for taking the time to answer thoughtfully
Posted by Kristen J. (Member # 24566) on :
For me it was very helpful with cognitive issues. I had improvement within a few days.