do you HAVE to herx to be getting well? does everyone herx? or do some people herx but not really that badly?
I just want to know if there are people out there who are getting well without too much herxing.
I am only in my 5th week of antibiotic treatment (amox), and I wouldnt say i had any really noticeable herxing, but i would also say that the abx have been very effective so far.
I dont feel "great" or anything but i felt like i was on death's door before i started them and i am definitely a LOT better since then, certainly more functional. I noticed effects of the abx within days.
I'm not complaining by any means (!!) and i still beleive i have a long way to go, i just wonder if this is normal? I dont hear a lot of stories of feeling better right away..
Oh i do believe I had a HUGE herx in feb. after taking Ceftin for 10 days for bronchitis (which is in part how I determined i had Lyme). After that, i went very much downhill until i got abx a few months later..
Now i dont know if thats b/c ceftin would work better on me? or is it just b/c that was my first herx so that is why it was so bad?
Kristen
Posted by TerryK (Member # 8552) on :
I have heard that some people don't herx much. Probably depends on how well your body can process the dead bug debri and how your immune system responds to the debri.
The fact that you are feeling better is significant. Perhaps talk to your doctor about it but in my view, the measure of treatment efficacy is not how much you herx but progression towards feeling better.
I'm happy for you and jealous!
Terry I'm not a doctor
Posted by hope4sofia (Member # 20577) on :
My LLMD said ANY response to atb treatment was a good sign. That means herx or improvement.
I have had some herx-type symptoms but what I notice most is that my night sweats have pretty much stopped.
Are you on IV? I'm not yet. I've heard that herx can be worse on IV.
Posted by middlesizedpanda (Member # 20676) on :
Im on week 3 of Doxy and have had no herx either. Symptoms alot better than they were. Definately less fatigued & the tinitus & tingling in my hands & feet is less than it was. Fingers crossed the abx seem to be working.
Posted by TF (Member # 14183) on :
You do not have to herx. Not everybody herxes.
I only had what I called "bad days" every 28 days. They were days I didn't feel so good. Maybe felt very, very tired.
I got well slowly. I had 2 years of lousy lyme treatment (on only one antibiotic, high-dose and no testing or treatment for coinfections) and then one year of good lyme treatment (Burrascano protocol).
I completed my lyme treatment 4 years ago and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I had lyme, babesiosis, and bartonella.
Posted by mina222 (Member # 19825) on :
TF - i really appreciate your post, hopeful stories are hard to find and just starting treatment i reaaaaaly need some of those.
I am afraid i'm going to be having "lousy lyme treatment" like you said you had, my doctor thinks coinfections are overhyped. I'm looking into other possible doctors, but mine takes insurance and my other options do not. I may try to get mine to test me anyway (what does he care? i'm the one paying for it)
is it NOT good to be on only one antibiotic? i guess i dont understand that. it seems some people are on one at a time and some are on a combo of meds.. i dont know if thats dependent on if you have coinfections or not?
Sofi, I am not on IV, I hope to avoid it if I dont need it. I am only on amoxicillin right now.
Terry, i think i just got lucky that we found a drug that works for me right away... that was the impression my LLMD gave me anyway, it was just a lucky guess.
Posted by Leelee (Member # 19112) on :
quote:Originally posted by hope4sofia: My LLMD said ANY response to atb treatment was a good sign. That means herx or improvement.
That is what my LLMD said too. Some reaction to abx whether herxing or feeling better means it is working.
Posted by TF (Member # 14183) on :
Mina, for 2 years my so-called lyme literate doctor had me only on high-dose amoxicillin with probenicid (not an antibiotic). (He also took insurance.)
Most of the time, a lyme doc who takes insurance will NOT follow the Burrascano protocol. That's been my experience.
When I got to my now famous Burrascano doc, he said to me, "Congratulations, you have succeeded in turning all of your lyme into the cyst form."
I consider those 2 years wasted. I could have gotten rid of my diseases a lot quicker had I gone directly to a Burrascano doctor.
Read what Burrascano says about proper lyme treatment:
COMBINATION THERAPY Treatment of chronic Lyme usually requires combinations of antibiotics. There are four reasons for this:
1. TWO COMPARTMENTS- Bb can be found in both the fluid and the tissue compartments, yet no single antibiotic currently used to treat Bb infections will be effective in both compartments. This is one reason for the need to use combination therapy in the more ill patient. A logical combination might use, for example, azithromycin plus a penicillin.
2. INTRACELLULAR NICHE- Another reason, discussed below, is the fact that Bb can penetrate and remain viable within cells and evade the effects of extracellular agents. Typical combinations include an extracellular antibiotic, plus an intracellular agent such as an erythromycin derivative or metronidazole. Note that some experts discourage the co-administration of bactericidal plus bacteriostatic agents, thus the recommendation to avoid a cell wall drug combined with a tetracycline.
3. L-FORMS (SPHEROPLAST)- It has been recognized that B. burgdorferi can exist in at least two, and possibly three different morphologic forms: spirochete, spheroplast (or l-form), and the recently discovered cystic form (presently, there is controversy whether the cyst is different from the l-form). L-forms and cystic forms do not contain cell walls, and thus beta lactam antibiotics will not affect them. Spheroplasts seem to be susceptible to tetracyclines and the advanced erythromycin derivatives. Apparently, Bb can shift among the three forms during the course of the infection. Because of this, it may be necessary to cycle different classes of antibiotics and/or prescribe a combination of dissimilar agents.
4. CYSTIC FORM- When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change from the spiral form (``spirochete'') into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form. The antibiotics commonly used for Lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen. More details are provided in the section on treatment options. (p.12-13)
Regarding coinfections, if you doc poohpoohs them, he may not know how to properly test for them either, let alone treat them. You need a doc who knows that virtually EVERY lyme patient has coinfections. That is what Burrascano says. It is one of the main principles in the Burrascano protocol.
Quote: "A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens." (p.4)
All of my friends and acquaintances had more than just lyme. This is no coincidence.
So, I tell people to spend the money and get rid of their diseases quickly rather than messing around with a doctor who doesn't know enough to get you well. Lots of people get well in a year with good treatment. And, you only go to the doc once per month or less.
These good docs take credit cards.
Go to the top of the "food chain" and get your life back before you lose your job, your health insurance, your house, your credit cards, your spouse, your friends, and maybe some of your brain and have permanent nerve damage (vision, hearing, etc). Nobody can predict the damage lyme will do to any given person.
By the way, I was treated only with oral antibiotics. I had undiagnosed lyme disease for 10 years.
Posted by lucecaboose (Member # 13058) on :
So how do you find a "Burrascano" doc? Or are you actually going to him? How are you finding LLMDs who follow his guidelines?
I was bitten in 1999, started getting sick in 2003, misdiagnosed until 2007 and for the past 2 years I have been on abx without a herx and getting worse all the time. I've had 3 LLMDs. The first one was bad, the 2nd treated all his patients the exact same way and it didn't work for me. When I finished all of the orals, he wouldn't do anything else because I lived several states away and couldn't do IV. I am now with someone a bit closer and I think he's the best so far but that isn't saying much.
Posted by Lymetoo (Member # 743) on :
lucecaboose .. you go to Seeking a Doctor here at Lymenet to find an ILADS dr.