posted
Ok... how come everyone else reports feeling much better on IV abx?
I've been on IV Rocephin for six weeks now - 2 grams/day - and I feel just terrible... continually terrible. Now doc started me on oral Diflucan along with it, because he thinks the feeling terrible is about yeast.
I took my first dose of Diflucan (although I've taken it before many years in the past) last night and got extremely dizzy, light-headed and nauseous. I noted my mood improved very slightly, and I slept many hours (which is good cuz usually I can't sleep at all) - however I was dizzy and naseous and felt just generally very ill.
What is going on? Why does everyone else report feeling better with abx but not me? I just feel worse and worse since starting abx for lyme (did a few weeks of oral Zithro+Art and then Ketek+Art - made me feel horrible). Why???????
Is this some kind of extended herx? Am I doing something wrong?
My diet is pretty good (I cheat sometimes but lately not) - no wheat, no sugar, no simple carbs, the only diary is yogurt..... whatup?
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, dear Bb. THERE you are.
We MISSED you.
I'm recollectin' you missing yer own birthday thread, fer cryin out loud.
I'd order up some Theralac (some threads about it) and take one every night.
I'd hunker down for some long herxes.
What orals are you on concurrently with the Rocephin?
Is this like the beginning of treatment for you? As in the first coupla months? Because if so, you could have a really high bacterial load. My doc beat it down for a few months with orals first before hitting me with Rocephin, so the IV wasn't too bad - the preceding months of orals were actually far worse.
And the Flagyl later -- well, let's not talk about that.
The Rocephin regime is pretty hard on your liver and gallbladder so be sure to run panels for that stuff regularly. Another good reason to use Theralac to prevent the problem - in order to avoid needing Diflucan (a liver-beater for me) to fix it.
Wish I had more and better ideas. Others will, I bet. Just wanted to welcome you back and say I missed you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Sometimes it can take a couple of months before you feel any better at all. The fact that you feel like garbage could very well be an extended herx. If you have a high bacterial load what your going through now is normal.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Hi, I experiance the same thing. I started IV Rochephrine just over three months ago and got really worse most of the time. I had nausia dizziness everytime I infused and huge pressure in my chest. I was infusing at night and switched to middle of the day which helped alot. I also take the diflucan in the morning.
My worst symptom improved(recurring meningitis) but the rest of the time I felt much worse then last week I hit the three month mark and I am actually starting to feel better. I believe I was having a very long herx. One of my doctors reccommends staying of the meds for a few days if the herx becomes unbearable. I also use detox foot pads and rife therapy. I mostly used the rife for pain symptoms and detoxing until recently.
I herxed so bad the first time I rifed for lyme (body pain that put me flat on my back)that I wasn't ready to try it again for about a month. Keep your spirts up, Just remember you will get better.
Posts: 68 | From USA | Registered: Aug 2005
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I think your doc is right about yeast, especially since the diflucan is making you feel much worse. If he keeps you on the diflucan you should start to feel better in a day or a few days. Yeast can really do a number on you...
I don't know what you are on but I needed 200mg of diflucan to make a difference when I was on rocephin and flagyl. I think with rocephin (and flagyl) the probiotics just get killed off too soon to make much difference.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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Well, gosh, Michelle - I had no idea! Didn't know there were birthday threads... I'll go look for it. And thanks.
I've just ordered the Therelac - am taking Threelac now but don't feel much from it.
I'm not on ANY orals with the Rocephin except Diflucan (and that's not an abx)... My doc says from what he's seen he doesn't believe in combinations... (any feedback on this appreciated).
It is sorta the beginning of treatment - had about four weeks of zithro and a few weeks of ketek orals before this.
The thing I'm really unsure about is what is an extended "herx" or if I'm just getting worse...
It is good to hear that other people took over 3 months to start feeling better from IV - thanks Niki - the people that I have spoken with said they all felt better on IV almost immediately!
I am taking 200mg of Diflucan now - just started - but I am afraid for my liver... Caat - are you saying that you were on Rocephin, Flagyl AND Diflucan.... and your liver survived that?
Thanks everyone for the input. I am totally freaking out...
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It took me 4 1/2 months on IV rocephin before I felt like I was improved. And I did improve a great deal.
Picc was pulled at 6 1/2 months due to an unknown (yet to be determined but unusual) fungal infection. Make sure you have monthly blood cultures done through the picc line to check for subclinical infections.
Hang in there!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I have been treated with IV rocephin while taking many other drugs at the same time. You could be nauseous because you don't have enough food in your stomach when you're infusing, you aren't taking Actigall and your gall bladder is in trouble, and the infusions aren't long enough.
Make sure you have food in your stomach when you're taking pills and infusing. Are your infusions at least 30 minutes? Take actigall, probiotics, Therelac, diflucan, and nystatin.
Also, my liver has survived 1-1/2 years of heavy doses of many meds, and I think it's because I take milk thistle.
Hope you are feeling better soon -- hang in there.
P
Posts: 449 | From Vermont | Registered: Nov 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I was on IV for 6 months & herxed almost the whole time.I had a high germ load with an entrenched infection.
I am on orals now & have some good days now & then.
It's been three years & my patience is wearing thin.But after 20 years I guess three isnn't that much.
I think patience is the hardest thing to have while being treated for chronic lyme.
It can take years of threapy to get those B@#$%$#ds under control & here lies in the patience part.
Yes,easier said than done.
Hang tough & hang in there, it is not forever even if it feels that way. Take good care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
Sorry you are feeling so bad.
My kids did IV rocephin last spring and they were down in bed for about 4-6 wks, then slowly got some energy and less pain.
Like pea, I think you should look into protecting your gall bladder. (My daughter had hers removed and I think actigall might have prevented this.)
Also, in my opinion the combining abx is the way to go if you have have chronic lyme.
Hard to think about all this when so sick.
My 14yr old daughter says--Get a picc line and you feel like crap on crap on crap. Then you get better.
posted
Well, thanks again everyone so much for the input - and I need more help.
What is going on right now just CAN'T be right. And it can't be a herx either (can it?).
It's been 6 weeks on IV. About two weeks ago I started getting these acute attacks of horrible intestinal cramping.
About an hour after I eat I am doubling over with the WORST intestinal cramping you can imagine. Its right under the ribcage, very much upper intestinal, not lower. It's locus seems to be on the left side.
It feels like my ribcage is in a vise - the pain is unreal. I have to take about 4 Advil and a Percoset to get relief. That can't be good.
Its so weird. Its like food is getting stuck in the transverse colon on the left side, or gas is getting stuck there - or there's a blockage or something. It hurts bad.
I know everyone will say tell my doctor, and I have, but he doesn't know what it is... although he DID examine me and said it wasn't gall-bladder (thank goodness). He says I can stop the abx altogether though if I want.
What should I do? I know Dr. J in NC has people take abx breaks, even with IV meds, and some ppl back down for a "herx" - but is this a herx?
Is it possible that the Rocephin has totally ruined my gut already? Could I have a lesion or something there?
I'm afraid to go to the GI ducks for obvious reasons. Can you take a week off Rocephin? Or does that just create Rocephin resistant ketes? Should I just stop eating solid food while on IV? Do I give up on this abx and switch?
This disease is soooo hard from a medical decision-making standpoint - its unbelievable.
Sorry to go on so long - but I would really appreciate hearing from anyone with any ideas about this - or hearing if anyone had something similar happen to them.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My gosh. Reading this board sometimes is like watching a horror movie.
Bb, I would be very worried about such reactions to the medications. Do you have coinfections with your lyme? Is your doctor not concerned?
I am currently working with two LLMDs. One is treating me holistically and he is addressing coinfections. The other is treating allopathically and based upon clinical diagnosis, he does not feel I have any of the coinfections so he did not do bloodwork for them. Igenex has confirmed I had Lyme (I have the right antibodies in my bloodstream) but the test were indecisive about current Lyme although the clinical signs clearly show current Lyme infection.
My only herxing (which is bad enough) is migratory joint pain. I'm still mobile. Some days are really bad and some are so good I go ride my horse.
I seem to herx after every acupuncture session for a couple of days and sometimes it is with flu like symptoms. Never do I experience anything like you describe. I'm only on Ketek antibiotic. I am disappointed in its results and worried about its possible damage to my heart. The homeopathy, on the other hand, produced greater herxing and provided me with the B vitamins, magnesium and other nutrients as well as melatonin, seratonin, for mood and sleep enhancement. I sleep better than I have in years. Minimally 8 hrs a night and many times longer. I had stopped the homeopathy a couple of weeks before beginning the Ketek. My energy level plummeted. Yesterday I began the homeopathy again as you can take it along with other medicine with no fear of interaction and my energy picked right up, though my joint pain is increasing too.
Don't assume anything concerning your health!!
I'm really sorry you are so sick. Should you seek a second opinion?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hmmm. I don't think going off the Rocephin for a week will kill ya -- my LLMD took me off for a week to get my liver numbers back off the moon without missing a beat. So it must not be the world's worst thing.
HOWEVER...
In the meantime, I would order up some Theralac.
I am betting that your intestines are screaming out for help.
While it's true the Diflucan kills yeast, it ain't putting nuthin good back in. I'm thinkin your belly's giving you an agony over it.
Now, I would run that plan past my LLMD first, of course. But if you're doubled over in pain, ya gotta do something.
If a week off with Theralac once a day doesn't fix it, then I would consider a trip to the ER or a walk in clinic and have them do some kind of scan. And fix a frosty glare on anyone who looks funny at your PICC line.
That's my .02 cents. Hang in there. I'm so sorry you're having a rough time on top of a rough time.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
consider the effect of diflucan on heart rhythm. google 'diflucan and heart function' or diflucan and pics of ekg.
consider rocephin + kidney function
since Bb causes conduction problems, and diflucan effects heart function, albeit i don't recall, off hand, what aspect/component of heartr functioning diflucan effects, this may worsen the signal-conduction effects within the heart muscle itself. there are three degrees of conduction defects, with which lyme is associated; other tbds might effect heart function, as well, but i don't know.
macrolides also have a similar, if not same effect on heart function as does the diflucan.
see if metabolites of the macrolides in the body may have the same effect as the macrolides that you did earlier, because you may have residual metabolites of macrolides in the body; thats to say, your still proccessing these out of the body, i don't know for sure, but if macrolide metabolites are still in the body, and they have the same/similar effect on some aspect of heart function as do their respective parent molecules form which they are derived, then the addition of diflucan would be expected, to the degree that it will worsen heart function---worsen those aspects of heart function affected by macrolide metabolites.
luvs - I have tested CDC positive for Lyme (Igenex) and also positive for Babs via FISH (Igenex). Negative for Ehrlichia and doc didn't test for Bart (gotta get him to do that)...
I know it sounds crazy, but I've probably had Lyme most of my life (barefoot outdoors all summer long on Long Island growing up) and my knees used to swell up inexplicably when I was a kid. They don't anymore though.
My doc is concerned about the gut pain - but his answer was to stop the Rocephin, something I don't want to do unless I have to. I'm glad your treatment is helping you - I tried homeopathy back some time ago and it did nothing for me, but everyone is different.
Its funny about joint pain - that is the one lyme symptom I've never ever had. Sometimes I feel like we're all dealing with very different bugs, even though they call it all "lyme" - my main symptoms are digestion, sleep (or lack thereof) energy and mood.
Michelle - I ordered Therelac and am waiting for it, am pounding other probios now but doesn't seem to be doing much... maybe I will take a week off. How long did you remain on IV and did it help you? What orals did you do with it? Flagyl and anything else?
sweet pea - my doc doesn't like actigall for some reason - but I am taking a cholagogue. I will add in milk thistle. Didn't know you had to infuse over 30 mins - am doing it in about 5 minutes but will slow it down.
And thanks pq - I am not having heart issues though, thanks goodness, so I'm not gonna worry about that right now, although its good to know.
So basically, no one but me has had this gut swelling up thing on Rocephin... oi. Not sure what I should do but I really think there's some other bad gut parasite in there... I don't know. I will consider taking a week off, or going to the ER to have them scan the area, or both.
Thanks everyone. Any other ideas greatly appreciated.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:[QBMichelle - I ordered Therelac and am waiting for it, am pounding other probios now but doesn't seem to be doing much... maybe I will take a week off. How long did you remain on IV and did it help you? What orals did you do with it? Flagyl and anything else? BB [/QB]
Hey Bb. Glad to hear you're going to get on Theralac. It truly leaves the others in the dust.
My LLMD wanted 90 days of IV. Blue Cross wanted 30. I wanted to go to war with them, but my liver panels went through the ceiling, so 30 days was all I got.
I stayed on 3000 mg Amoxicillin + 1500 mg Probenecid daily throughout.
A month or two later, we added Flagyl to my Amoxy regimen -- OUCH.
I thought the IV helped but thought staying on it MUCH longer would have been better. Just could not do it due to liver rebellion/Blue Cross rebellion.
LOOOONG herxes are not uncommon, especially early in treatment, like you are.
Take good care of that tummy; I bet with a small break and some Theralac you would be ready to dive in again.
Please keep us posted...
Hugs and good wishes,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I didn't know your gut was swelling....I was bloated for the 1st week or two of infusions. I also had some pain just below my ribcage. I was never as uncomfortable as you (except for one day of extreme nausea). I was much better after I started eating before & after infusions, taking more probiotics, and extending the infusions from only 5 minutes to at least a 1/2 hour. The infusion supply pharmacy loaned me a pump, which made it a lot easier.
I'm not sure that a doctor can determine whether or not your gall bladder is ok without a sonogram. If you do decide to take Actigall, make sure you have food in your stomach when you take it.
The one thing I couldn't control while on rocephin was yeast, which I had been able to deal with while taking just oral abx. So be really careful about candida.
Let us know how you're doing!
P
Posts: 449 | From Vermont | Registered: Nov 2004
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