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Is a herxheimer a necessary part of a lyme diagnosis?

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Posted 1/12/2018 12:37 PM (GMT 0)
If i didn't experience any herx on doxy and zithro for the last 3 weeks, could this mean i don't have lyme and i have co's like bart, even tho i have ab for lyme, or could this mean that i don't respond to treatment, because i'm not targeting the right bacteria, like bart?
Posted 1/12/2018 2:45 PM (GMT 0)
Not everyone Herxes. I have been in treatment for almost 2 yrs and haven't herxed that I am aware of. Some believe it's necessary to know you are killing off bacteria and some feel a slow gradual treatment is best. My LLMD is taking that route with me. We will still kill off bacteria and detox but not at a severe enough level to cause those reactions as I am told. Biggest thing is to DETOX DETOX DETOX with everything you can.
Posted 1/12/2018 2:47 PM (GMT 0)
If you tested positive for Lyme & Co and you are symptomatic then you have Lyme. I know I had this wishful thinking at first but I know I have it without a doubt. For me I think it may have something to do with the strain of bacteria and my immune system ( always had a good one).
Posted 1/12/2018 3:10 PM (GMT 0)

Mojkce said...
If you tested positive for Lyme & Co and you are symptomatic then you have Lyme. I know I had this wishful thinking at first but I know I have it without a doubt. For me I think it may have something to do with the strain of bacteria and my immune system ( always had a good one).

I didn't test positive, i only had a few bands, and i never tested co's.
Posted 1/12/2018 3:45 PM (GMT 0)
I don't believe I have ever herxed. My LLMD also takes a slow and steady approach. I had 4 bands and 2 IND's, but test interpreted negative.

For me Zithro did absolutely NOTHING
Posted 1/12/2018 4:07 PM (GMT 0)

Missouri said...
I don't believe I have ever herxed. My LLMD also takes a slow and steady approach. I had 4 bands and 2 IND's, but test interpreted negative.

For me Zithro did absolutely NOTHING

Interesting Missouri, maybe there is hope for me to get my life back, because if it is not Lyme and co's, than what i'm going to do? I can't live like this..

Also, what do you mean guys by slow approach? You didn't take too much abx and thus didn't experience a herx? So if you would've taken more, then you would've herxed, is that what you mean? I'm taking Doxy daily and Zithro pulsed, and i feel like i'm throwing quite a lot there (400 mg daily of Doxy isn't a small dose, and Zithro is 500 mg 3 days a week).

I feel like Zithro doesn't do anything either, i'll have to switch it to Rifampin eventually.

Post Edited (greatguy) : 1/12/2018 9:14:13 AM (GMT-7)

Posted 1/12/2018 4:24 PM (GMT 0)
I also never herxed. Not everyone does. My immune system was in super shape when I got bit.

I also took a slow gentle approach with my treatment.

What slow and gentle means to me is that I started with a low dosage and slowly worked up to the maximum dosage.

I also detoxed like my life depended on it.
Posted 1/12/2018 4:48 PM (GMT 0)
I don't detox and i still don't herx, if by herx you mean becoming bedridden and unable to do anything than to stare at the ceiling (extreme case of herx).

I'm not even feeling generally an increase in symptoms, besides probably fatigue, but that could be from the meds.
Posted 1/12/2018 4:59 PM (GMT 0)
Hi Great guy,
No, not everyone herxes. Those with the ability to detox well (no genetic mutations that interfere, no system dysfunction that may slow down the transporting of those toxins, and so on) definitely stand a lot higher chance of not herxing. Personally, I come from the 'other side of the tracks' - I do not detox well, and herx on very small doses. Larger doses, especially of abx nearly killed me (no exaggeration).

So, rather than looking for a herx to show that the medications are working, you will need to look to symptom reduction. I would encourage you to keep a very detailed symptom journal in order to help you keep track of each symptom and it's severity. If you have not been keeping one, you will begin to notice that most symptoms are not steady in their severity - it ebbs and flows during the day, and/or each week or month. We all have our own patterns with these symptoms.
Posted 1/12/2018 5:07 PM (GMT 0)

greatguy said...

Missouri said...
I don't believe I have ever herxed. My LLMD also takes a slow and steady approach. I had 4 bands and 2 IND's, but test interpreted negative.

For me Zithro did absolutely NOTHING

Interesting Missouri, maybe there is hope for me to get my life back, because if it is not Lyme and co's, than what i'm going to do? I can't live like this..

Also, what do you mean guys by slow approach? You didn't take too much abx and thus didn't experience a herx? So if you would've taken more, then you would've herxed, is that what you mean? I'm taking Doxy daily and Zithro pulsed, and i feel like i'm throwing quite a lot there (400 mg daily of Doxy isn't a small dose, and Zithro is 500 mg 3 days a week).

I feel like Zithro doesn't do anything either, i'll have to switch it to Rifampin eventually.

By slow approach, I mean that my LLMD's protocl is 30 day courses of one oral antibiotic at a time generally. He still uses bacteriocidal doses. In contrast, other LLMD's may use a much more aggressive approach with several antibiotics all at once via IV or oral.

I believe herxing is more likely with an aggressive IV combination antibiotic protocol. Or also individuals that cannot detox well like Traveler said.

Did you just start treatment? I totally get the skepticism. I still have many doubts myself.
Posted 1/12/2018 5:11 PM (GMT 0)
I've been reading and watching lots of videos of Dr. H, and from his words, you either herx and then improve, or your improve and then herx, rarely it is just improving without herxing.


Also, my immune system is working apparently well, but one thing just doesn't ease my mind, and that is: abx work only if the immune system detects lyme, right? What if i got a neg. result and that means that lyme is there, but the immune system doesn't detect it since lyme has been there for a long time and now taking abx is useless, bcuz the bacteria adapted and bcuz of this i don't feel any die off reactions.

Someone could bust this theory?
Posted 1/12/2018 5:17 PM (GMT 0)
As I posted above:

Those with the ability to detox well (no genetic mutations that interfere, no system dysfunction that may slow down the transporting of those toxins, and so on) definitely stand a lot higher chance of not herxing. This is not assumptions, but proven. Some people just don't herx simply because they detox well enough. Some may have a lower number of overall bacteria, so it's easier to treat also.
Posted 1/12/2018 6:46 PM (GMT 0)
Smaller number of overall bacteria means they don't have lyme then. Lyme is considered, when it invades your body, but if there is only small reservoir of infection, than the immune system is able to hold it, right?

I have a normal immune system, according to CD 57.
Posted 1/12/2018 8:15 PM (GMT 0)
Then there is no reason for me to buy liposomal glutathione, NAC and alipoic acid?
Posted 1/12/2018 8:40 PM (GMT 0)
I think you can still have a lower number of bacteria and still have Lyme & Co. Perhaps just a different degree of it in ones system. A really good immune system before contracting it may be a factor and also the strain of bacteria.
Posted 1/12/2018 10:23 PM (GMT 0)
Agreeing with Mojkce. While some can fight off a small amount of bacteria, others can't. This is about the amount of dysfunction in the body and the strength of the immune system. But for many, a small number of Borrellia is all it takes - many of these infections are that way, a small number of bacteria/protozoa can make most people quite ill.

If you have symptoms though, you can rest assured you need treatments, whether you herx from them or not.

As far as buying glutathione, NAC and Alpha lipoic acid - that is up to you and your doctor. The glutathione and alpha lipoic acid are both helping the body (specifically the liver) detox, NAC is different as it helps in other ways as well (from my understanding), but both alpha lipoic acid and NAC are precursors to glutathione in the body, so a person doesn't need all of them, unless that person has significant issues with detoxing and evaluation by the LLMD indicates that they are all needed.

I use alpha lipoic acid (along with many other things because I'm a poor detoxer), because most glutathione products are made with soy (I have a really bad allergy to soy), and NAC needs a prescription, I believe (and I don't have a doctor or the insurance to pay for one).
Posted 1/12/2018 10:29 PM (GMT 0)
I was never as sick as many of the others I see here. Not sure if that could be attributed to a lower number of spirochetes, or a lower number of co-infections, or a better functioning immune system, or shorter duration of infection.

I notice a large spectrum of Lymies from those that are bed bound or wheelchair bound writhing and screaming in pain, to those that have bad and good days but too sick to work, to those like me who are suffering but still able to work and function at a low level.

I have not seen any scientific investigations as to why some are so much sicker than others. It seems to me that thew sickest Lymies are the ones that herx the most.
Posted 1/12/2018 10:34 PM (GMT 0)
Thanks. Being that chronic lyme is not recognized by the CDC, it is hard to know whether the symptoms, many of them being unspecific, are really lyme or co's or maybe something completely else. Plus the fact that lyme tests are so inaccurate, even further makes one think that this can't just be lyme, that probably it isn't lyme. And i still think at this point and probably still will untill i see improvement.
Posted 1/12/2018 10:47 PM (GMT 0)
There are many possible reasons for the CDC to not recognize Chronic Lyme - but that sure doesn't mean it's not around and a very real thing.

And very few people have "just Lyme" - it's usually complicated by other infections from bacteria, viruses, fungus, mold, chemical sensitivities, and so so much more.

It comes down to something similar to this - if you have the symptoms of these infections, and other diagnosis do not really fit, then treatment is in order because if symptoms ease/resolve or the person experiences a herx, then that's the only "true" confirmation most of us get.

I've said this so many times on this forum that I may have said it before to you and not realize - but.... I was infected for 37 years before diagnosis, I was in treatment for a full 12 months before I finally had a CDC positive Lyme test and a CDC positive RMSF test come back. But - what I wasn't counting on was the the CDC and my own state not registering my CDC positive tests. There are zero cases reported for the year that I tested positive for. :/
Posted 1/12/2018 10:51 PM (GMT 0)

Missouri said...
I was never as sick as many of the others I see here. Not sure if that could be attributed to a lower number of spirochetes, or a lower number of co-infections, or a better functioning immune system, or shorter duration of infection.

I notice a large spectrum of Lymies from those that are bed bound or wheelchair bound writhing and screaming in pain, to those that have bad and good days but too sick to work, to those like me who are suffering but still able to work and function at a low level.

I have not seen any scientific investigations as to why some are so much sicker than others. It seems to me that thew sickest Lymies are the ones that herx the most.

I wish we had the ability to "like" a post on here. Agreed Missouri!!! I was one of the sicker ones for many years, and BOY HOWDY! Did I ever herx! I was bed bound, then house bound for long stretches at times, and haven't been able to commit to showing up anywhere daily (except to my bed!) in so many years, I doubt I could get a job any more without trying to explain Lyme disease to some poor soul!!!
Posted 1/13/2018 12:37 AM (GMT 0)

Missouri said...

greatguy said...

Missouri said...
I don't believe I have ever herxed. My LLMD also takes a slow and steady approach. I had 4 bands and 2 IND's, but test interpreted negative.

For me Zithro did absolutely NOTHING

Interesting Missouri, maybe there is hope for me to get my life back, because if it is not Lyme and co's, than what i'm going to do? I can't live like this..

Also, what do you mean guys by slow approach? You didn't take too much abx and thus didn't experience a herx? So if you would've taken more, then you would've herxed, is that what you mean? I'm taking Doxy daily and Zithro pulsed, and i feel like i'm throwing quite a lot there (400 mg daily of Doxy isn't a small dose, and Zithro is 500 mg 3 days a week).

I feel like Zithro doesn't do anything either, i'll have to switch it to Rifampin eventually.

By slow approach, I mean that my LLMD's protocl is 30 day courses of one oral antibiotic at a time generally. He still uses bacteriocidal doses. In contrast, other LLMD's may use a much more aggressive approach with several antibiotics all at once via IV or oral.

I believe herxing is more likely with an aggressive IV combination antibiotic protocol. Or also individuals that cannot detox well like Traveler said.

Did you just start treatment? I totally get the skepticism. I still have many doubts myself.

Most people taking antibiotics (orally, not just IV) will herx at some point. The severity differs from person to person...as well as from one protocol to the next.
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