posted
I started taking 3 abx and anit- viral a week ago friday. Beginning yesterday everything got worse, much worse. Shoulders, elbows, wrists, lower legs so painful.
Earache and lymph node pain much worse too. Tired but really agitated as well. Is this the dreaded herx? I still have doubts that I'm treating the right thing. LLND says lyme for sure but there is that thing in the back of my mind that says what if its something else.
Does this sound like a herx to you and does it mean the diagnosis is correct, ( and maybe for me most important, how long is this going to last, I'm barely making it)
Posts: 199 | From utah | Registered: Jan 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Wow, that's a lot to start at one time. Many lyme patients are really sensitive to medications and must start slow but aside from that, it's impossible to know which medication is causing which symptom and that might be important information if you are going on a clinical diagnosis.
Many of your symptoms don't sound like side effects of medication but you would need to look up each med to see if it could produce any of the symptoms that you are having.
No one can tell you how long you are going to feel bad. Too many variables.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
My Igenex lab is positive for lyme, but cdc negative. I'v been on all three abx for 8 days with no problems until yesterday. I'm just wondering if this is really a herx or if I'm getting sicker with something other disease.
Maybe I'm the only one who ever doubts.
Posts: 199 | From utah | Registered: Jan 2009
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It took me a year to have no doubts. The begining is really hard.
It will get better in baby steps.I found just taking one day at a time helps.
I hope you get a break soon,where you feel a little better
Posts: 261 | From Piedmont | Registered: May 2008
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adamm
Unregistered
posted
If it gets your sx get better with continued therapy, then I'd say it's probably a herx. If not, though, I'd say maybe a drug interaction--have you researched the compatability of all these meds you're on?
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posted
I'm trying to trust my LLND, she says she's had great success with this combination for patients with my symptoms. She thinks my earlier treatment by a non Lyme dr. just drove the bugs into my tendons and places with little blood circulation. It was mono therapy of doxy after the initial bulls eye rash.
Posts: 199 | From utah | Registered: Jan 2009
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posted
anyone else please
Posts: 199 | From utah | Registered: Jan 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Sounds like a classic herx to me, but you need to check with your LLND and pharmacist or drug interaction website to be sure.
If you feel it's too strong for you to handle, you don't gain anything from beating up your body in a herx. When you kill off the spirochete it releases more toxins (endotoxins, possibly other kinds as well), in turn causing a worsened set of symptoms, and sometimes new symptoms.
Herxing too strong can set you back badly and even cause damage or worse. You have to take this slowly - Lyme takes a long time to reproduce and therefore a long time to kill.
*** You might want to get serious about a detox and support regimen if you haven't already - this can really help you through herxes, as it can bind endotoxins and ease elimination of toxins. There is considerable study over decades of certain herbs that serve this function. Let us know if you need any info on this. ***
You need to keep reminding yourself that Lyme is a systemic disease, and you will have all sorts of weird seemingly unrelated symptoms popping up and making you miserable.
But you always need to be mindful of drug tolerance and other issues. The best way to do that is to keep in good touch with your LLD and ask their professional experienced opinion. If you are having too much herxing, let them know and ask if they can be flexible on the dosing and ramp up or space out your doseages (I forget the term for that right now).
My LLMD says "slow and steady wins the race", and from what I have seen, and experienced, this is true.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
According to Dr. Sam Donta, a herx is the best confirmation he knows of to diagnose Lyme disease. He often says if someone takes antibiotics and has a herx, then you know for sure.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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btmb03
Unregistered
posted
I'd ask your LLND whether you can start one one or two meds perhaps at 1/2 dose and work up slowly, then add in the other abx and AV.
No point in being horribly miserable..
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posted
What if you don't herx. Does that mean no lyme. I have been taking Azithro. and Mepron for Babesia for about 5 wks. No herx reaction. Thought I was having one but it was just a virus I got from my kids. Does this mean i don't have it at all. The LLMD told me that the Babs test was a FSH test which means that they visualize the parasites so its not as black and white as a lyme dx. Is that right? And does no herx yet mean I do not really have it at all. Confused!
Posts: 42 | From new york | Registered: Dec 2008
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btmb03
Unregistered
posted
kmj - I'm no expert but there's no hard and fast rule as to "feeling worse on abx = Lyme dx". It's probably just ONE of the many things doc use to gauge or confirm their clinical dx and/or progress in tx.
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nenet
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Member # 13174
posted
Having a herx helps confirm Lyme, but not having a herx does NOT rule out Lyme. Some people just handle toxins better than others, and sometimes some drugs produce a different herx response or none at all.
There are a lot of variables. Not only that, but you haven't been in treatment long. With longer treatment or a switch to other drugs, you may get to experience a Herx reaction. Even if you never do it still won't mean you aren't killing Lyme etc.
A Lyme specialist's clinical evaluation is your diagnostic guide. Presence of herx can be a helpful road marker, but absence of herx does not rule out a Lyme diagnosis.
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm not officially diagnosed with anything yet.
Back in December, I had a sinus infection which the doctor gave me Ceftin for.
Within 2 days of starting it, I began having episodes of spaciness, panic, and just generally feeling whacked out.
I posted about that on here, and a few people said it was most likely a herx and very likely an indication that I do have Lyme.
I will be asking my LLMD about that on Friday when i see himm for the first time.
I would do as others suggested and run it by your LLND what you're going through.
As for doubting, I don't think you're the only one by a long shot.
Did you see the post about Can I Convince Myself It's Not Lyme or something like that?
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, the probability of that being a herxheimer reaction is high, though a worsening of symptoms alone is only circumstantial evidence that is considered further in the diagnosis.
With an Igenex positive Western Blot (CDC doesn't mean squat), you have a 95% + probability of having Lyme Disease, combine that with a history compatible with the disease, symptoms, and a reaction to antibiotics, the odds increase further.
"
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Lyme "herxes" usually occur one to "several" days after start of therapy, so that's on the outer edge of the time-line for a classic herxheimer reacton to Lyme-fighting abx.
I would agree with 'btmb' that you should start out more slowly, say with a single abx or combo of 2, then add the 3rd... & then the anti-viral. Otherwise you can't tell what might be causing the reaction. It could very well be herxing. (Remember- a true Jarsch-Herxheimer reaction is Only as a result of spirochetal [disease] bacteria die-off.)
Other conditions (yeast overgrowth, drug side-effects) are different & can build, swell & ebb or come on strongly after the 1st dose [allergic reaction].
This is why it's so confusing & really req's an experienced LLMD to monitor your progress.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
I've got a call into her but I thought I might get a little insight while waiting for the return call.
Posts: 199 | From utah | Registered: Jan 2009
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posted
Im not sure if your question is if youre herxing, or if you really have lyme.
Look,
If you have the symptoms, your LLMD thinks you have lyme, your igenex test is positive for lyme...ahem...you have lyme.
As for the herxheimer reaction... Again, if you didnt feel any increase in symptoms before, but you feel them now that youve started meds, it sure sounds like a herx. The sure way to know though is that when all the toxins finally clear out of your system (when the flu like symptoms end), how do you feel? If you feel better then before the symptoms started, then again, yes, it sounds like a herx.
As for the timing of the herx, it may have taken a few days for the med blood levels to have risen to the point of hitting certain areas in the body, or its the timing of the Bb cycle, or it could be your body just being ticked off at all the meds being put in your body at the same time.
But the key is always the same... how to you feel afterwards. So long as you continue to feel better, even if its a very slow progress, you're on your way!
btw: Make sure you're having routine blood tests done of your liver, kidney and blood panel to make sure your body is handling the meds ok?
Posts: 514 | From . | Registered: Apr 2008
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posted
My LLND called last night. She could almost tell me what I was feeling she was so confident of the the herx. It was right on the the eight week mark which corresponds to the Bb growth cycle and the symptoms were what she expected but much more severe. So I'm going down on the abx for a little while.
Posts: 199 | From utah | Registered: Jan 2009
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Aahhh! U hadn't metioned that "eight week mark." I think most of us didn't realize you'd been on abx quite that long. I was thinkin' less than ONE week by the way you worded your intro.
Yes, for many of us (certainly not all), the 4th, 8th & poss even 12th week on a new abx protocol- that's "effective" against one's Lyme- is not a fun week. That's why I always looked Fwd to the 5th & 9th week. I knew symptoms would substantially abate. Again, depending on the individual's spirochete load variability, and if you have co-infections (a big problem lately) you may not notice this phenomena.
Dr's really aren't Sure why it is, but if you battle it thru, w/ reduced doses, if neccessary, you can continue the recovery.
When you Don't herx on a monthly schedule anymore, that's a clue for the LLMD to switch you to a different protocol (or add a drug), assuming you are still significantly symptomatic.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
according to my LLMD YES!!!!!!!!!!!
This is where I got my name from, that dreaded Biaxin herx.
I developed MCS/vertigo right after and have been fighting with the abx now for 6 years.
I dont know what is good anymore, not this.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Thanks for your responses. They all help a little. Just to know others have gone through this. I plan on getting better and better after each herx. My doc says those with many neuro problems take much longer but I have very few neuro symptoms, mostly just pain and fatigue.
I'm pulsing now, every other day. I hope to go back to full protocol in a few days.
Posts: 199 | From utah | Registered: Jan 2009
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