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Not sure if I've had a herx??

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Posted 4/26/2011 2:18 AM (GMT 0)
Hi all
I am typing on my iPhone so pls excuse any typos. I tested positive for Lyme and echrilosis in jan 2011 and started on Amos and biaxin. Within a week or two my various symptoms of pulsating leg, numb feet and much more went away

I stayed that way for a while but am getting the pulsating leg thing coming and going. I worry because I didn't get sick herxing after starting my abx so does this mean I font have lyme? Does everyone with Lyme hAve a herx that knocks you down?

Any thoughts would be appreciated. Thank you
Posted 4/26/2011 6:18 AM (GMT 0)
Lyme is a mysterious disease and everyone has a different story. Also... everyones herx is different. But if you tested positive for Lyme then theres no arguing that fact.

Lingering symptoms are common and recovery is slow. This is caused by residual damage in your body. If you are finished with your antibiotics I would suggest researching herbs and supplements to help you recover.

It is a good idea for Lymies to take B-12 and Magnesium supplements.

I have found combining Ginseng and Astragalus awesome at giving an inner energy boost.

Also... I didn't start feeling better until I upgraded my diet to more fruits and veggies, water, and alot less sugar... avoided drugs and barely drank... and made sure I got good rest every night and exercise during the day. Unfortunately most people don't just magically get better on their own... you have to fight back. Hope this helped.

-MysteryLyme
Posted 4/26/2011 7:02 AM (GMT 0)
Hi Carrie,

It could very well be a herx. Normally, a herx causes symptoms to get worse. You can have new symptoms while herxing or have old symptoms come back. Try taking a detox bath and see if that helps. Also, let your doctor know as well. I hope you feel better soon.
Posted 9/8/2011 5:26 PM (GMT 0)
Hi,

I'm a new member and have the same issue as Carrie48 - I'm on Day 7 of antibiotics and so far, no herxing. I would like to hear from more of you about this. I was diagnosed by IGenix 2 years ago, went to Mayo for a 2nd opinion and they wouldn't even do the Western Blot because my Elisa came back negative. I was fed up with doctors in general and went off all my meds (20 supplements, thyroid, antidepressant. . .) and felt great for 4 months. All my symptoms disappeared! But then a "crash" and I was told only a psychiatrist could help me. . . it's been a long stretch now, with antidepressants again and thyroid meds, but I still don't feel better - have mainly loss of brain function symptoms now - and a new doctor suggested I readdress the Lyme diagnoses. I expected to herx right away with the antibiotics- and, nothing! How long might it take to get a herx response? Reiterating Carrie's question, Does everyone get a strong herx with antibiotics? How much antibiotics does it usually take to cause a herx? Thanks for any help you can offer!

-Mols
Posted 9/8/2011 6:22 PM (GMT 0)
Hi Mols, welcome to the forum!

Sorry you have had such trouble finding your way back to wellness. I'm glad you are getting some good help now.

Not everybody has a herx reaction. If your body is very good at ridding itself of toxins, you would not experience a herx. Also, seven days is not very long to expect a reaction. What have you been prescribed and what dosage?
Posted 9/8/2011 9:26 PM (GMT 0)
Hi! Thanks so much for replying. Already your comments have helped. . . I had read that most everyone with Lyme herxes with antibiotics and the expected timing was from one to three days from starting treatment, so your perspective is welcome. It's not that I really want to herx and be sick. . . but the Lyme explains so many of my symptoms, especially the prior ones, that it would be good to have an answer. The doctor I'm going to suggested that I should try the antibiotics to see if they caused a herx, which would confirm the Lyme diagnosis. She prescribed 400 mg. of doxycycline and 1000 mg of amoxicillin daily. She"s not a Lyme doctor, but seems pretty aware. Do these doses sound like they're in the right ballpark?

Thanks again!
-Mols
Posted 9/8/2011 9:52 PM (GMT 0)
Yes, right ballpark, right team players!

So glad you found someone so on the ball, as it were!

Some people have a "honeymoon" period before having a herx. Sounds kind of nice, doesn't it?

Hope things become clearer soon.
Posted 9/9/2011 2:23 PM (GMT 0)
Welcome to the forum both of you. I believe herx is different with everyone. It depends on how well your body reacts to the antibiotic, the stage of the disease, the stage of the bacteria cycle, what coinfections you have and what meds you are on. I was told I would get worse before I got better and did herx horribly on bactrim after 15 days. However, with different treatment along the way and again going back on bactrim, I did not herx as bad. I would urge you to only see an LLMD. Do not waste you time with infectious disease. They treat with a totally different outlook and protocol which is not accepted by the lyme community. Best of luck to you.
Posted 9/9/2011 3:58 PM (GMT 0)
Thanks! Your replies are really helpful. I'm starting Week 2 of the Doxy and Amox today and now "get it" that the herx, if it comes, could be a few weeks out. If I understand right, I try it for a month and if there are no results, reevaluate. Is the bacteria cycle also one month? The doctor I'm seeing is alternative, mainly for thyroid/adrenal issues. She said that if I have a reaction to the abx she wants to get me into an LLMD.
Posted 9/9/2011 4:18 PM (GMT 0)
Hi Mols!
Welcome to the forum! I'm sorry that you have had a bumpy road so far!! If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

After reading your first post the first thought I had was that you never got rid of the Lyme and other tick-borne infections you tested positive for by Igenex 2 years ago! I would say that you need to see a LLMD right away, no need to wait to see if you 'react' to the abx - you already have your diagnosis! What, if any, treatment did you get two years ago? Do you remember seeing any rashes at that time? What symptoms are you having now?

Sorry for all of the questions, but they will help us to understand where you might be in your infection(s).
Posted 9/10/2011 6:19 PM (GMT 0)
Thanks for the "Welcome"! Your "New to Lyme" and search functions on this site are really helpful - wish I had found you all two years ago! I also posted a week ago on another Lyme site and have had no response yet - am very appreciative of the ones I've had here.

To answer your questions, my main symptom now is just brainfog with difficulty making decisions, planning, organizing, moving in any direction. I lose my words a lot and can't remember the simplest things sometimes! I've had to lower my expectations immensely, to be content with tiny bits of progress. I have very little energy and get out of breath doing almost nothing, like curling my hair.

It was a second LLMD who told me about a year and a half ago that nothing could be done for me since most of my original Lyme symptoms were gone and what I had left was severe depression. She said "for older people" (I'm 55 now) the treatment protocol was too hard and that the only help for me was a psychiatrist. The original LLMD who diagnosed the Lyme is still around, but there were lots of things I wasn't comfortable with in her practice. I'm in the Northern VA area about an hour outside of DC if anyone has any LLMD recommendations.

My initial treatment was lots of supplements, about 20 built up slowly, in preparation for heavy metal chelation if I remember right. My worst symptom was those random pinpricks all over, along with a "rolling brain", just waves in my head. I also had a lot of joint pain. I might have had a bullseye many years before, when we lived in Europe - I had a strange rash and thought it was a spider bite - didn't go to the doctor, so there's no telling now really if it was a bullseye. I was rushed to the hospital one night during that time with a high fever - never explained, and also had my knee swell for no reason around that time. Looking back, it's hard to remember if they all were together, but I think so. That was about 15 years ago. If I understand correctly what I've read, the symptoms I have are quite consistent with Chronic Lyme.

I've had a few MRIs of the brain done, and have been told not to worry about the "choroid cysts" similar to what one would find with migraines or diabetes (I have neither), or the "white matter irregularities". Has anyone else had these findings?

-Mols
Posted 9/10/2011 9:52 PM (GMT 0)
HI again!
Would you mind sending me an email? I do have the name of a LLMD in Pa. and what I found written about this place is very encouraging for those infected with Lyme & co-infections.


It was a second LLMD who told me about a year and a half ago that nothing could be done for me since most of my original Lyme symptoms were gone and what I had left was severe depression. She said "for older people" (I'm 55 now) the treatment protocol was too hard and that the only help for me was a psychiatrist.

Geez!!! A LLMD actually told you that you this???? How horrid and unprofessional!! If you email me, would you mind including the name of that doc so that I don't unintentionally suggest that office to someone? I think I would be reporting something like that!! devil

Another thing worth noting is if you were in Europe when you were infected, it is very likely that you have a different strain than most LLMD's here are familiar with. Please be sure to mention this to any LLMD you might see from here forward. It might mean the difference between healing and suffering longer.

White spots and reduced blood flow in the brain are actually seen fairly regularly in Lyme patients, so nothing unusual there.
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