LymeNet Flash: Where are the people who DON'T herx?

This is topic Where are the people who DON'T herx? in forum Medical Questions at LymeNet Flash.

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Posted by CD57 (Member # 11749) on :

Wondering if there are people out there who don't herx and improve?

Something seems to have gone wrong in my treatment. My LLMD says that I have immunological impairment that I guess is worst than most. The thing is, I USED to herx like a you-know-what. This stopped my second year of treatment (I am in my third).

So--either I haven't stumbled on the right combo (there are a few left to try) or I'm not on the right track with abx. Plaquenil and Septra and malarone and Biaxin may be good ones.

Posted by nomoremuscles (Member # 9560) on :

Yale, Tufts ...

Posted by djf2005 (Member # 11449) on :

yeah jocus20, one of my good buds, never herxes hardly ever, even initially in treatment.

i wouldnt say you "have" to herx to get well, only its indicative of "something" going on.

feeling worse can be more yeast, it can be imbalances, it can be a myriad of other stuff in addition to killing the buggers.

dr h (west coast) actually claims in the new book out that he doesnt like his patients to herx and sends them out for complex detox regimens before he puts them back on abx......(although dont u see dr h?)

anyway, dont give up, youll find the abx that help, and it might also be that lyme or cos or not your primary issue at this point in tx, could bt yeast, mold, metals, etc etc etc

lyme is never just lyme, although how i wish it were just 200mg doxy for 2 weeks away.....

best

-d

Posted by CD57 (Member # 11749) on :

D, good to see you back (or not)?

Interesting re new book I will check it out.

There is defo some infection left, I don't know that it's Lyme anymore though.

What is Yale, Tufts?

Posted by jkmom (Member # 14004) on :

I have very slight herxes, if at all. I have had a few days where I felt like I might be getting sick but it lasts less than 24 hours. This has happened to me more recently than before treating so I count it as a herx.

I am definitely better on abx. When I stopped one of them, I quickly became worse than when I started.

Posted by CD57 (Member # 11749) on :

I have heard that lack of herx means you're a good detoxer....BUT....what if there isn't improvement after? I can only think this means wrong treatment.

I have only been knocked out and in bed for a whole day twice...once on Bicillin, once on Levaquin. Both stopped working after awhile, LLMD kept me on them too long.

Posted by Tincup (Member # 5829) on :

My GUESS would be it depends on many things.. especially your bacterial load.

I only can dream of the days when I don't herx.

[Big Grin]

Posted by JamesNYC (Member # 15793) on :

I think I herxed a little at the start of treatment. Felt crappy for a few days after starting abx. I went off for a month, restarted, and herxed a bit, again, for a few days. Maybe a week. The sx were mild, nothing like what others say they're going through.

But now I'm on 5 abx and I can't identify any sx that are caused by herxes. Actually, I'm having no problems at all from the abx, except for deep depression that seems to be caused by Lariam for a few days after I take it..

So, I believe I am not herxing to any noticable degree.

James

Posted by springshowers (Member # 19863) on :

I have always been a HUGE herxer. And. well
I just always brace myself or start things slowly and work up.

Now I have to say.. Since starting IV abx I did herx but it was not the same and I am working through it and getting better.

I mean in the past I would herx and Stay in that mode for months on end sometimes.

I learned in time that is NOT how long I should go and i stopped doing that. But the point is I was the type that would herx and not ever work through it and herx on near every abx I tried.

So what the heck it all means? I have no idea?

I mean I think its all guess work for the most part. Is it from the die off or not? How can you stay herxing for so long unless you stop the treatment. ??

I have not figured this out.

How do some people not herx at all?

Is it because of varied abilities to detox? or how much of a infectious load you have?

I do not know...

I do know that the IV abx have been totally different for me. in that area and I went many years on orals and always felt so Stuck or frustated and always staking breaks etc.

So does this mean I have by passed a total part of the a system that was really causing problems for me in getting better all this time.?

Is this part of the key reason some do better on IV. If so I wish I had thought of this before and I always assumed the IV was just more potent.

But I think it by passes a whole process that somehow is related to and adds to our herxing.

Ok I know I may not have made any sense..?

But maybe something to think through?

Posted by pamoisondelune (Member # 11846) on :

I haven't herxed really for a couple of years. The first month when i was on Biaxin, i had big reactions, and the first month i was on Tetracycline i slept for a month, 16-18 hours a day. For me, i just sleep it off.

But i've been basically self-treating for a couple of years, on antibioitcs plus dozens of herbals. They keep the symptoms down, but no really obvious herxes; at times a slight worsening.

I felt i wasn't going to get better this way, so i did my first Rife session last night! My forehead felt better right away. I had been skipping evening doses of abx to help my gut deal with Candida, and my forehead had been getting woozy a lot.

I thought it was Candida, but since it cleared after doing 612 Herz, a Lyme frequency, i guess it was forehead fog due to lyme trying to break out, on only one abx dose a day.

I read that people who have O type blood herx less than people with A or B. Not a MD source of info, but that could explain why i just sleeep for a herx.

---Polly Polygonum

Posted by keltyl (Member # 14050) on :

Never herxed in a year and 1/2, but haven't improved either. I thought I was the only one who neer herxed.

Posted by EyeBob (Member # 12572) on :

I have never really herxed like some of the folks that you read about here. Mine are more subtle, livable types of herxes. It's been that way from day 1 on ABX treatment.

bt

Posted by gemofnj (Member # 15551) on :

I am in remission and I have never experienced any herxes that are frequently discussed, but I'm sure I'm very lucky.

Also, my LLMD treated with MONO therapy, so that could be what makes the difference.

Posted by just don (Member # 1129) on :

I never herxed or improved on abx.

Posted by keltyl (Member # 14050) on :

gemofnj...what is MONO therapy?

just don....ditto for me.

Posted by skigal (Member # 7443) on :

MONO therapy - 1 abx at a time

Posted by Maryland Mom (Member # 2043) on :

First of all...mono therapy is not always realistic when dealing with a bacterium as hard to kill as good ole B. bergorferi. When you add in the probability of coinfections, it gets even harder.

I like the approach of STARTING one abx at a time, then adding to that regimen; that way, if you react to something, you have a better idea of what it is you're reacting to.

As for the subject of herxing: not everybody does, and its not always an indication of inadequate treatment.

Personally, I have had major herxes lasting months in initial phases of treatment and now, years later, usually a few days.

I have 5 children who all have Lyme, and my husband has it too. I have seen each of them experience different levels of herxing.

One of my sons, who started Lyme treatment while being hospitalized following emergency surgery for septic arthritis (found to be caused by Lyme), was very ill with Lyme, put on IV Rocephin, and never seemed to herx at all, and after 1 1/2 years of treatment, made a complete recovery!

To date, he is the only family member who has been treated for late stage Lyme, and fully recovered. He has been symptom free for 7 years now. I believe that what saved him is that in addition to a wonderfully functioning immune system, he had no coinfections.

Posted by keltyl (Member # 14050) on :

I belong to a private board also, and always thought I was about the only one who never herxed. That's okay, except I never get any better either.

Posted by feelfit (Member # 12770) on :

I just always feel bad. Never have been able to tell a clear herx or not. I do get extremely bad around my time of month. I get 2 livable weeks out of a month. The rest are pure torture.

Posted by CD57 (Member # 11749) on :

Maybe not herxing is a sign of both being a good detoxer and not finding the right combo?

Posted by WildCondor (Member # 434) on :

quote:
Originally posted by nomoremuscles:
Yale, Tufts ...

Hhahha! n1! [woohoo]

Posted by Cold Feet (Member # 9882) on :

Tin Cup was right on -- there are MANY variables, While it's a good question, consider:

- everyone's germ & viral load is different;
- everyone's immune system is different;
- everyone's past & present treatments are different.

I can keep going, but you get my drift!

[Wink]

Posted by kim812 (Member # 17644) on :

I never herxed or had any progress either...

Posted by Jane S (Member # 22586) on :

A question, I have always had about abx. Before lyme dx, when I was coming down with sore throat, sinus infection, etc. and given abx I was begining to feel better within 24 to 48 hours after beginning abx treatment.

If a healthy person was given the abx we take would they feel no reaction. Or is the reaction we feel from lyme herx due to abx and possible confirmation of lyme die off.

For example, I have had trouble with all abx I have taken to treat lyme gradually helping on 3rd abx in almost 4 months. Doxi make me feel worse, Ceftin only slightly better, Azithromycin is best so far, but can't tolerate higher dose due to liver pain and kidney pain, so I am taking low dose for now with some improvment.

If my perfectly healthy husband without lyme took the same doses of abx would he have no reaction? Because he is heatlhy not ill with lyme or anything else...

I've always wondered that due to never, ever having a problem with any abx I have ever taken for an illness. So does a herx confirm lyme?

If I had no lyme would abx not affect me, but they infact have made me sicker than I as before...

SO I thought this was a slight confirmatin for lyme, but why do you get sicker or herx with abx treatment for lyme but not with abx treatment for another illness?

Alway curious about this?

Any opinions?

Posted by CD57 (Member # 11749) on :

This is a good question.

I get immediate hot flashes from artemesinin. I have tried to talk my husband into taking some to see what happens, if anything, to him. But he is resisting. [Frown]

Posted by Erica741 (Member # 15186) on :

quote:
Originally posted by CD57:
I get immediate hot flashes from artemesinin. I have tried to talk my husband into taking some to see what happens, if anything, to him. But he is resisting.

Ha! Maybe you should open the capsules and pour into his water or something? [lick]

Posted by LindaS (Member # 20251) on :

My doctor describes herxing as the reaction to the neurotoxins emitted when the organism is in decomposition. The more efficiently you detox, the less you'll herx.

Posted by CD57 (Member # 11749) on :

I don't think I have much Lyme going on at all. Just my personal opinion. Just BLO symptoms. Unless my LLMD is right and "it's not that simple!"

Posted by canefan17 (Member # 22149) on :

There are ways to lessen your herx reactions.

Epsom Salt Bath
Lemon Water
Exercise

Posted by micul (Member # 6314) on :

If someone has a high bacterial load, and is just starting treatment, then most likely there's gonna be some herxing.

Later on in Tx things can be a lot easier as far as herxing goes if the major organs are working properly, and the person is getting enough exercise and eating properly.

I think the people that continue to have problems with a lot of herxing have impaired liver/kidney function because these organs have been damaged.

I would interpret the hot flashes that you are getting from Artemisinin as a sign that you still have Babs. Another sign would be difficulty in getting to sleep when taking it before bed on an empty stomach. I can take 800 mg's before bed and still sleep like a baby all night without any sleep meds at all.

And just because you aren't herxing or improving doesn't mean that the drugs aren't still working to some degree. Biofilms and hyper-coagulation limit their effectiveness....the drugs can't kill what they can't get to.

Posted by JamesNYC (Member # 15793) on :

Hmmm,

Exercise is a way to detox? Maybe that's why I haven't really herxed, I'm an extraordinarily athletic person.

Have I been detoxing without realizing it?

I never thought about it that way.

James

[ 10-15-2009, 02:49 AM: Message edited by: JamesNYC ]

Posted by trigal2 (Member # 20578) on :

Like James I am an athlete and find that when I can get my butt up and running - literally - my herxes are much easier to tolerate.

Last month I started tx again (5 yr. hx including IV in 2005)with Doxy and pulsing Zythro. I had the worst herx ever..could not function and exercise totally blew me out. Took a couple weeks break from tx and did some detoxing with herbs and cholestermine (sp).

I just started back up again and am on day 3 with no herx. I usually herx within 24 hours...But not this time. This time I actaully feel BETTER. Night sweats are gone, fatigue is less, brain feels clearer....

I think there are so many factors to think about. The bacteria load, where your body is in terms of detoxing, how strong or weak your immune system may be at any give time, etc..

I for one do not think you need to herx to feel better.Everyone's body is different. My husband had lyme - caught it early, took meds, never herxed and is absolutely fine now.

Posted by seekhelp (Member # 15067) on :

If one's able to exercise like this, IMO your bacterial load isn't as high as another person. Of course, there are many, many other factors, but it just seems logical. I read it here constantly and just wonder. [Smile]

Posted by JamesNYC (Member # 15793) on :

Seek,

Maybe it has nothing to do with load. Maybe some people just have a more debilitating reaction than others.

Or, maybe because some of us are more athletic, the symptoms don't get as bad. If one is already pretty sedentary, and then they are made more so by illness, it may compound itself.

Or, maybe different strains cause different symptoms.

There is so much variation in reaction and symptoms, it's hard to know what is going on from individual to individual.

But to be sure, exercise is great--IF one can do it.

Posted by D Bergy (Member # 9984) on :

There is only one reason that I know of that cause people that normally Herx, to stop.

The Spirochete load has been reduced to a minimal level. This does not always mean that the bacterial load is also down, but means a majority of the Lyme is now in cyst form. Or you have succesfully reduced both, which is difficult to say the least.

I have found that killing Cyst form does not result in much, if any Herx, but it does increase joint pain, until brought down to a minimal level.

This may not always be the case. It may depend on how much Cyst form is present.

Dan