You KNOW we are in almost the same boat. (Taking on water?)
Good question....I am supposed to consider IV in the near-term future too according to medical advice.
I guess if we can do IV long enough; like Sarah did, for more than 6 months, we can see benefit. I do not know if I can afford that, purely from a financial point of view. Having put up with bicillin for months, the pain doesn't worry me.
Maybe we can see similar benefit from just doing orals on a continuing basis?? What do you think?
Sorry that you do not live up north, we could have infusion parties! Posted by Aniek (Member # 5374) on :
I haven't done IV. But remember, the people with chronic Lyme who benefit from IV are on for much longer than 2 months.
You are also misinterpreting the Fallon study. The study showed no sustained results in neuro-cognitive symptoms and fatigue. It did show sustained results in reducing chronic pain.
Posted by Cobweb (Member # 10053) on :
Depends on what you consider success. I think IV was beneficial. I can say that because I didn't have complications.
I don't know what it would have been like with a young child-I could go pretty much at my own pace.
I am certainly better and glad I did it. The jury is still out on sustained benefits.
Cobby
Posted by CaliforniaLyme (Member # 7136) on :
IV saved my LIFE.
I was on orals for a year and KEPT DECLINING and PROGRESSIVELY GETTING WORSE NEUROLOGICALLY.
I was BAD, I was DYING. My husband and mother were talking tertiary care facilities and who was going to RAISE MY CHILD.
IV SAVED MY LIFE. Lucky for me I had a house to take out a second mortgage on, otherwise I would be DEAD.
Posted by lymie tony z (Member # 5130) on :
Yes, I definitely have had sustained benefits from IV therapy.
I don't think orals can do what needs to be done alone. I initially was refused IV abx and was given oral ammoxi an doxi and stayed on them for six
months till the "DUCKS" said I "MUST be cured and any other problems are risidual dammage and won't ever get any better" Horse manure!
My symptoms(total symptoms)were down to only three days a month.(Which SHOULD HAVE TOLD the
ducks that I should stay on the abx because I still had infection going on...duuuhhhhh!) BUT
I came off the orals and within a month and a half I was a basket case again only more neural symptoms and personality problems.
I got on IV ceftriaxone the first time and somehow, after only one month, I contracted
(either pneumonia or chronic bronchitis) the ducks would'nt make up ther minds. Something
viral so I had to pull the ceftriaxone and got levaquin in my arm in the hospital followed by some orals and the albuterol breath inhalor.
A couple years of orals and had to go back on IV ceftriaxone and only did two months. Was
doing really well compared to what I had been doing on regimen of just metronidazole and
finally had to go back to IV Ceftriaxone two months but this time we followed it up with
clindamycin to ward off any lung issues. I only had the clindamycin one month because I started
to feel some tendon and muscle problems(pain and stiffness)pluss my picc area(usually covered
and kept sterile)must have gotten some fungi or rash under the bandage. Had to pull it. This was
about four years ago. While I did have some IM pennicillin in between and orals.
I would never have achieved the sustained success I have right now without the IV
Ceftriaxone....You'll notice a dark/veil of mind funk slowly float off of your mind when you
get this stuff. It's really great...I think....and totally necessary in any regimen of treatment for serious lyme disease.
I had extenuating circumstances due to an incorrect diagnosis and prescriptions given to me initially....so I may never be truly "CURED".
However. I'm a darn sight better then I was back then....before any IV therapy.
Are you really, "OLD ENOUGH", to be calling it the, "BEE'S KNEES"???
zman
Posted by CaliforniaLyme (Member # 7136) on :
p.s. And I have kept my benefits, my gains, for over 7 years since!!! NORMAL LIFE again, what I never believed I would get to live again!!! I am so blessed. Every time I put someone on the Memorial page I know it could have been, should have been, me, if the IDSA had their way. My regular doctors were just LETTING me decline, letting me die. I thank goodness every day for IV Rocepihn and my LLMD, that is why I devote time to The Cause, because without my LLMD and IV Rocephin, I wuold NOT be alive today.
Posted by sometimesdilly (Member # 9982) on :
Here's why i'm asking...
If money were no object i would feel OK about going on IVs indefinitely. But money is a huge concern, especially since we are looking at 1-3 years of mostly uncovered, out-of-state Lyme tx for our son.
The question for me is, if 2 months of IV's don't cut it and that's all the IV tx insurance will cover, is spending every last cent we have on IV's a smart choice, or is it better that i should just try to maintain and focus our resources on getting our son better?
---------------------- zman- am i old enough to know about bees knees?. let's just say i expect AARP will be sending me an invitation soon. 'nuf said.
thanks for sharing your IV tale. i'm glad you saw benefit from going that route, though it sounds like it was a real struggle.
Sarah- I know your success story, and it has always been inspirational to me. I'm just wondering how typical it is, and how much of your rebounding had to do with the IV's?
Vermont- you seem to be doing MUCH better with the orals than i ever have. i've been on orals for going on 2 years now, and have seen very little benefit.
our paths are diverging in that way, though hey, infusion parties with you would have been grand-- maybe we can meet up for tea instead sometime soon?
Cobby- your recent IV tx is very much on my mind. I remember how much you felt you had improved, and have been hoping for you that your improvement is sustained.
Aniek- i do remember those with pain saw sustained improvement in fallon's study. That part of the study just isn't very relevent to my circumstances.
Almost all of my pain is now and has always been neuropathic (is that a word?). My brain is what has been most infected/affected.
Ali- i know your tx was too short to make the difference, and really awful for a long while into it to boot. watching you lose ground again is not as painful as your feeling it for yourself, but it hurts me to see it happen.
thanks to ya'll for the replies- dilly
[ 15. January 2008, 08:51 PM: Message edited by: sometimesdilly ]
Posted by CaliforniaLyme (Member # 7136) on :
Dilly, why not IM? it is safer!!
Posted by yourtroubl (Member # 11087) on :
IV saved me. I had 90 days (give or take some) I went off in October and I have a few bad days but no where like I was, not even close.
I highly reccomend IV. I started telling a difference right away.
Posted by AliG (Member # 9734) on :
Casual observation:
It seems as though people, for whom IV Rocephin is not the miracle they've hoped for, often have something else at play.
I don't know if you've been tested for ALL possible co-infections & viruses. I think I'd ask to be re-tested for Bartonellosis (by any species) and get the virals checked out too, if you haven't.
It is also possible that the IV took down the Lyme & what I'm now feeling may be more Bart related. ???? Even if doing a course of IV is NOT the be-all-end-all, I may be diagnostically helpful. (That's what I'm hoping for anyway )
edit to add: I DID NOT start seeing a difference right away. It tool me about 7 weeks, I think.
Posted by listenswithcare (Member # 10719) on :
For me, IV Rocephin was a very good decision. I was on it for 5 months with Zith and Flagyl and then switched directly to Bicillin LA shots 3 times per week (and continued the Zith and Flagyl).
The cognitive improvement itself was enough to warrant staying on the IV that long.
I think for those who relapsed, they may not have been given something like Bicillin to keep the treatment going. I would ask about getting that with the new LLMD.
When I switched to Bicillin, I felt I did go backwards some, but now I am feeling better than I have in a long time.
Today I saw my LLMD and I am now going to stop the Flagyl, but stay on Zith and Bicillin with the target of getting off all ABX by the end of summer.
I say - pay for the Rocephin if that is what you need.
Robin
Posted by heiwalove (Member # 6467) on :
does anyone know how much IV costs if you have absolutely no insurance - ie, entirely out of pocket? PMs are graciously accepted. thanks. Posted by lou4656 (Member # 10300) on :
Hey Dilly! I am also going to a new LLMD at the end of February - Dr. L. Any chance we will be seeing the same person? If we are, I would appreciate the snarly office staff warning.
You can PM me with anything that you think I should know. Thanks!
Posted by map1131 (Member # 2022) on :
dilly, you are asking some great questions? The sad part is, nobody can tell you 6 weeks, 8 weeks, or 6 months of IV is going to make things better or cure you.
You have to weigh your situation, your resources and your heart of hearts and decide.
I know someone who did many mths? She's still ill. But her story could be completely different from yours?
I wish you the best in whatever you decide to do. May you find the right thing for you and your son.
Pam
Posted by jamescase20 (Member # 14124) on :
people! Dr B says if you relaspe after a few days off lyme abx (any lyme abx) you should expect a co-infection...lyme take 3-4weeks! to relaspe.
Posted by AliG (Member # 9734) on :
So for clinical Dx it makes sense that, when I started feeling better, they pulled me off IV.
I started relapsing 2 days later, now they know to look for co-infections before dragging me through months-years of ABX.
That's actually pretty reassuring to me. Maybe these guys really are on the ball with what they're doing.
It still FEELS like torment though.
So maybe two-three months, then off & see if you need to find co-infections. Then repeat IV if needed?
Posted by sometimesdilly (Member # 9982) on :
sarah- over the 2 years in tx with my going on-ex llmd, IM was never mentioned/offered as an option. not sure why one way or another. i'll ask my new llmd in march about that option...
Pam- trust me, i know not a single soul can tell me how long or what kind or how much or what It will do.
But getting a better sense of how IV's have or have not worked for others is important information for me to help me decide whether or not to go that route. As you probably know from your own experience, it is highly unlikely that my new llmd will be resolute about my going on iv's; the decision will be mine to make.
Lou- i'll send you a PM later today. am deleting that related bit from my post, since it is inappropriate.
Robin- the lack of follow-up abx seems like a logical reason for relapse- not sure if it is the only reason or the chief culprit?
Ali- i have been tested for everything known to mankind not once but twice, and have enough blood drawn each time to go to 4 different labs, and have had more directed tests several times beyond that,not to mention a spinal tap with spinal fluid being tested everywhere for everything.
i have never tested positive for anything other than Lyme.
ok, now forgetting who said what, but to whoever quoted dr. B about relapsing- i'm not at all sure if that is entirely accurate in every circumstance, but even if so, what exactly is a relapse if one hasn't seen improvement from a given modality?
sorry- my train of thought just putt-putted itself backwards to the station.. not ready to fully hit the tracks yet today..
definitely in the lavender today, dilly Posted by Vermont_Lymie (Member # 9780) on :
Hey there,
Sarah has a great point. IM bicillin has helped many. The shots are not fun but with proper preparation (icing!) they are no problem at all. Thankfully my DH is not squeamish and with brief training (a workshop on giving injections, and practicing on an orange) we can do this at home on our schedule. Other folks self-administer.
BTW, I brought it up as an option with my llmd; he had been suggesting the possibility of IV. But he thought it was a great idea once I brought it up as an option since I was holding off on IV!
I hope you can try bicillin or IV in 2008 Dilly!
[ 15. January 2008, 09:13 PM: Message edited by: Vermont_Lymie ]
Posted by lymie tony z (Member # 5130) on :
Dilly,
First I'm really sorry it sounded like my experience with IV's was very rough. It Really was'nt.
It was extremely difficult in obtaining the IV line or any abx due to
misdiagnosis,stubborness,probably the IDSA(now that I know who to blame),mis-prescribed
steroids and other medications that probably exacerbated my situation and disease(s).
soooooo
In comparison to all of that I had an extremely good time of it on my picc line and would do it again in a heartbeat.
However I might try a different approach then the way I "HAD" to take them and the doses
I "HAD" to put up with for the short time I "was allowed" to keep taking my initial orals and then the IV abx's.
I, very much indeed, like californialyme, was at deaths door. If not for AnnOhio, I might not be here today.
I could not, prior to oral abx therapy initially, formulate words and get them out of my mouth.
There would have been no way I could have sat at a computer and typed.
I was off work on a Temporary disability prior to the diagnosis of lyme because of the missed
diagnosis's and collaboration of at least two campus's of medicine I had gone to for help. The
Cleveland Clinic and the Case Western Reserve collage of medicine or there suburban
affiliates. However, after I diagnosed my own disease and forced my duck to prescrib at least oral abx.
I had, what my ducks at the time called a most "dramatic recovery" from symptoms....with a
smirk! As if I did'nt have anything wrong with me in the first place. (THE JERKS).
However, they were working under the assumption that I had only done two months of doxy......
In fact, I lied, cheated, and practically stole four more months of abx (namely doxy and ammoxy)
and attained a status of feeling well enough to return to work. I only had three bad days a
month and thought, because they told me after my initial two months of orals, that I was indeed
cured of lyme and any other symptoms were residual or leftover affects of having had lyme
disease and would never get better. How utterly stupid and wrong they were. It's incredible how
these ducks can look themselves in the eye and sleep at night.
I doubt the time expired to experience a relapse after IV abx, written about earlier in
this thread, is any indication of anything. I can tell you however, that I did relapse after a
month and a half(noticably declining after two weeks off of any abx, namely the orals mentioned
previously)and had lost everything I had gained initially. Unfortunately in my case when given
the same orals to reverse the relapse, they did'nt "dramatically" do anything, this time, to
rebound me from the relapse. I know why that is now, I should have done, whatever it took then,
to have kept taking what was, "dramatically", helping me, till I was rid of even the three
days a month of experiencing symptoms. Instead, I listened to my, uninformed and uneducated, or
otherwise alteriorly motivated "lyme specialists" (as I was assured they were)at that time,and stopped my oral abx's.
I did, after doing one month of IV Ceftriaxone and then Levaquin, followed by several oral
combinations achieve the level of recovery I thought I had achieved pre-relapse.
I have however needed extended, open ended, IV abx, with several months, sometimes a year in
between IV therapy,to rebound from the levels orals decline me down and leave me.
I have also gained some successes with some orals in between IV's. Two years of doing nothing at all but metronidazole for example.
I have had some trauma in between IV therapies as well which probably had some impact on my
intermittent declines.
I also seem to be hanging onto "chronic fatigue" as a constant unremitting symptoms as
well as poly sites of pain and stiffnes/weakness and ballance.
You on the other hand can actually type on an internet.....
you're starting out much better than either Califlyme or I. I think I can safely assume.
Sooooo, I would expect you to do much better on IV's then either one of us. Especially me(due to other extenuating circumstances).
Is it worth it? ABSO-freakin-lutely!
Would I go into debt. up to my eyeballs, knowing what I know now for my kids.....
I DID!
Hope this clears up any misconception I may have conveyed your way, concerning the usefulness of IV abx and dealing with this "SUPER BUG"....
I just ain't found "their KRYPTONITE" yet!
zman now I'm tired and have to lay down!....lol
Posted by map1131 (Member # 2022) on :
This is strange to say, but zman and Sarah, I felt the same way you guys did about dying. But, I felt I was dying a slow death with abx.
I honest to goodness after taking single abx, combo abx, triple abx, IV abx, heprin, hormones, etc etc....felt like death from '99-'03.
There was short period in that time that I thought maybe I was getting better. Sometime in '00 for maybe 4 mths. Smack!!!! Down I went again.
Abx honestly felt like a poison in my body. I know what a herx is suppose to be. I herxed and was toxic toxic toxic every day. Never having that "till you feel better period" that my LLMD talked about.
Pam
Posted by sometimesdilly (Member # 9982) on :
zman-
i've read through and tried a couple of times to follow your story point by point, which i very much want to do, but i can't-- i'm way too deep in the fog for the time being, and am forgetting one line as soon as i read the next, sorry.
the near death part registers- no, i'm not now and have never been near death with Lyme, with the possible exceptions of several heartblocks and once, for one almost unendurable week from either a herx or a response to meds that had i been a different person or with less to lose, might have ended with my taking my own life.
i am though very (and officially) disabled. There has been no stretch of time since first infected with Lyme that it was remotely possible for me to return to work. I can't tell you how much that grieves me- i loved working and making a difference in the world.
On the relapse thing- i'm really confused on that point. You did iV's and were better, right? and then when you weren't given follow-up tx, you fell back to the beginning, and didn't climb back up during the next round of iv's?
i'm sorry to be so dense, but i'm not sure how to connect the dots.
dilly
Posted by sfcharm (Member # 9392) on :
Having just finished my sixth month of Rocephin I will say I never felt better. I was at 90% until I had my gallbladder out one week ago. I couldn't say that I was at 90% till around December, I believe it took 4 or 5 solid months of Rocephin for me to turn the corner.
Since the surgery I feel I did a little backslide but am just today starting to feel decent again. After all it's only been one week since the surgery.
The downside to Rocephin IV is you could lose your gallbladder. However after researching and speaking with the Dr. many many people who don't have lyme are living without their gallbladders everyday.
I started Rocephin after one full year on oral antibiotics and six full months of bicillin 4.8million units a week. I'm sure the combination of all these drugs helped me reach the 90%.
Rocephin after four or five months got me feeling really really well again. I did it in combination with either flagyl or tindamax. Mostly tindamax as the flagyl really left me feeling sick and toxic.
One other point is cost. I have good insurance and paid a copay of around 280.00 a month for rocephin. My understanding is that it runs around 1300.00 a month out of pocket.
I would guess most people can't do it for price alone. It's outrageous. But given the opportunity I would say it's something to certainly look into and think about.
Barb
Posted by AZURE WISH (Member # 804) on :
I think that if I had known i had babs and treated babs prior or during IV that i wouldn't still be sick today.
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dilly