i'm curious. i've had lyme probably since 2005 maybe even longer with very little treatment.
is it better to hit it heavily at first with massive doses of antibiotics and cause a major herx? or is it better to start slow with smaller doses of drugs and see how you react to things?
i'm afraid if this new doc gives me a massive dose of something like biaxin, say three times a day, it will kill me (literally of course)...
so did your docs go heavy at first or give you smaller doses and build up to the big guns?
i ain't gonna go back to that dang er fer nuttin...
Posted by ByronSBell 2007 (Member # 11496) on :
I did the slow route for 1.5 years and go no better, I am now hitting it hard with everything on IV's.
I learned the hard way, this is a tuff disease and you have to be tuff with it.
Posted by krissymarie (Member # 15302) on :
My llmd decided to hit it with both barrels and am paying for it now!! Probiotics are a must... oh how Ive learned!
I did however feel better, but now he took me off of everything because of the terrible problems the abx's were causing. I am seeing him again on Thursday, and discussing the Iv.
Posted by tdtid (Member # 10276) on :
This is a tough question since all of us started either one way or the other and it's hard to really know where we would be if we had gone the other direction.
For those that have smacked this disease into remission, I'm sure it's been done both ways. Not two patients are infected with the exact same strains so it's really a crap shoot sadly.
For me personally, I went at a middle of the road approach with antibiotics and herbs combined the whole time for 19 months, but it's reached the point that it looks like I'm still going to have to head towards IV.
Some do very very well doing what I did, so it's a hard decision. I know my current LLMD said he didn't want me herxing so hard that I'd be in the ER and taken off the meds since that would get me no where.
So not sure what that means the IV route may do, but we follow the best path we can and hopefully you have enough trust in your LLMD to feel you are in good hands.
Good luck to you.
Cathy
Posted by randibear (Member # 11290) on :
how long do you have to have lyme before they decide to go iv's?
can pills work? my veins are just busted.....
Posted by Lymetoo (Member # 743) on :
A severe herx can land you in the hospital. I was there twice, even though I was "going slow."
You'll have to listen to your own body and decide.
Posted by tailz (Member # 10014) on :
I wouldn't hit it too hard.
Yeah, you'll kill lots of bug by surprising them all, but less than one week of IV Rocephin sent my liver enzymes through the roof long enough to halt any IV antibiotic therapy whatsoever. And when I'd restarted the IV Rocephin, it no longer seemed very effective.
Posted by Dawnee (Member # 15089) on :
I was told that I need to start slow and ramp up... with the high load in my body he said I would end up in the ER with seizures or paralysis, or mentally go through the roof.
I already have neuropathy that didn't start until antibiotics and my legs feel heavy and burning. So I'm glad I am starting slow.
Posted by Geneal (Member # 10375) on :
I've been on orals for about 21 months now.
Glad I've taken it slow and steady.
In my case it is definitely a marathon and not a sprint.
My LLMD believes that severe herxing can lead to permanent symptoms.
However, I have two young children and a husband I must care for and also treat for Lyme.
So.....the luxury of riding out a herx in my bed has never been offered to me.
I'd start slow and ramp up. That way you know what is happening and what to expect.
I am a go getter. However, due to family life have had to go and get it with orals.
BTW, not all 21 months have been for Lyme.
Theres been babesia (3 x thus far) and bartonella (1 x but another one coming).
Hugs,
Geneal
Posted by troutscout (Member # 3121) on :
Go moderate.
Then adjust.
I actually felt better while herxing....never figured that one out. So i roared right thru the herxes.
My gut feeling was....exhausted adrenal glands.
Trout Posted by cottonbrain (Member # 13769) on :
I've only been treated for about 14 weeks and despite taking low doses of abx, i have spent at least half my time herxing.
i was ill sixteen years before treatment.
Now I am improving but the road ahead is still very long.
Posted by lpkayak (Member # 5230) on :
everyone is really different. thats why you need a good llmd to help you sort it out.
my first year was alternative stuff and mild abx. i got worse
next two years huge doses orals with very careful milk thistle and probiotics and sbc and nystatin etc and tesing to be sure liver was ok
i worked the whole time so didn't herx horribly. but then i'm pretty tuff!
at one point i was pulsing and taking abx fri, sat sun...work wa hard on mon but i got thru it...and tues, wed, thurs were ok
after the two years i detoxed big time and cleaned up the yeast and continued to have symptoms go away and feel better
i was 80% better until a bunch of medical and emotional stress got my lyme active again
Posted by lymebytes (Member # 11830) on :
2 years ago when I started treatment I was told "the harder I herxed the better I'd feel" Uh, no....never happened. I went full throttle until recently (& even lower doses are still making me herx).
I did some research of LLMD's/herxing and asked lyme patients what they thought (link below of my findings).
I just told my LLMD the other day..."I feel bad enough, I am finished with hitting it hard and not progressing in leaps and bounds, so I am done with huge doses of anything".
Mistake? I don't know..I just know 2 years of hitting it hard did very little and even on smaller doses I am still herxing.
I agree with what others have said. We are all individual and treatment needs to be tailored to the individual.
I've been sick a long time and I have a number of genetic issues that hinder my detox ability. I didn't know about the genetic issues until I started lyme treatment and my doctor figured it out.
Because of the genetic issues, I started treatment already full of toxins. Those of us in this situation need a lot of detox support and we may need to go slower so that we don't become non-functional.
It seems like I've seen a lot of chronic lyme patients that look like they may have similar detox issues.
I think it makes sense to go slow until you know what your particular issues are, otherwise you take a chance of making yourself a lot sicker.
Terry
Posted by Lymetoo (Member # 743) on :
From lymebytes' link:
"Your brain will tell you that since the Herxheimer indicates the antibiotic is working, to stay on them. Please ignore your brain. Since 1988, with well over 600 Borreliosis patients, I assure you, going off antibiotics is the better part of valor.
We do not need any heroes or heroines. Toughness is not needed. "No pain, no gain" does not apply to Jarisch-Herxheimer reactions! The turtle wins the race, not the rabbit in this case."
That is a quote from my LLMD, written at least 10 yrs ago. He has now seen approximately 2,000 patients...probably more.
At any rate, I wanted to add that I found this to be true. When I landed myself in the ER twice in 9 days from a babs herx, I had to STOP the meds for 2 months.
WHY? I was absolutely too ill to take ANYTHING. So, the herx set me BACK. I gained nothing.
Posted by feelfit (Member # 12770) on :
I also believe that slower is better, experience tells me this.
I started my treatment with 2grams IV Rocephin 2x daily, seven days per week. Total of 4 grams per day, everyday.
It almost killed me. I did not herx hard until week 6 and then I was literally in bed for 2 months...with a bucket for heaving beside my bed, so inchoherent that I did not recognize the day from night, lost 25 pounds....blah, blah.
I am here to tell you ( thank God) that cutting back to IM Bicillin 1.2 mu week and 500 mg zith daily, plus changing Doctors has me in the land of the living.
When one has been infected and untreated for many years, the bacterial load is simply too high for the body to withstand the die-off.
My 2, Feelfit Posted by Rianna (Member # 11038) on :
If you hit it hard you must have everything in place for detox as you WILL end up with such a high neurotoxin/die off load you could be really poorly and actually become worse from taking the AB's.
I have done both ways but did not have the correct advice regarding detox and boy did I pay for that my CNS was damaged and I was so poorly and I could not tollerate even 1/4 pill of any antibiotic,I was so unwell.
I had to come off AB's and work with a new LLMD and NP to open all channells up and detox hard - it took me 4+ months to clear the toxins with agressive treatment.
I am now back on High dosage IV antibiotics and this time have an amazing detox protocol in place to clear the toxins from the die off this consists of
IV Glutathione IV Antioxidants Pysio Lymphatic Drainage Weekly Colonics with Rectal refloridization and many many detox vitamins/minerals/tinctures and gut binders.
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