posted
I'm wondering what most people do when it comes to herxing.
Do you try to push through a really rough herx and just ride it out?
My LLMD doesn't believe in that - he takes me off the medicine if I'm having a strong herx reaction.
As a result, I feel like I'm moving in slow motion when it comes to fighting this disease.
I've been off Ceftin for a couple of months now, taking Doxy only.
I herxed with Doxy, then again VERY strongly when I started the Ceftin, so he took me off the Ceftin.
I feel like I'm getting nowhere!
I did experience a feeling of getting my mind back a little bit in the beginning of July, but then nothing.
What I want to do is go back on the Ceftin for now (I'm trying to get Bicillin LA, but it's been a nightmare).
Also, I've been taking Mepron for about a week, but have stopped that until I can also get a macrolide antibiotic to accompany it.
What would you do?
My next LLMD appt is the 17th, but I feel like every day that is going by is another day wasted.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I started out Ceftin at 1/3 of a single pill, so I could avoid awful Herxing.
I am finally up to 1 whole pill (still half the prescribed dose) abut 9 months later.
I would stop the Ceftin for a day if I started to get scary Herx symptoms, like bad heart palpitations, tachycardia, really bad anxiety, seizures, or anything that was too much to bear.
Now, I still Herx when I increase my dose ever so slowly, but I can handle it now. I think the next time I increase will be exponential, and easier to take.
It really depends on how you are feeling, because it's about your body's ability to cope with the immune response and the buildup of released endotoxins when the spirochete lyses (get killed).
Maybe you could speak to your LLMD about ramping up on your dose of Ceftin, and see if that works for you too?
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Oh, I also decrease my doseage if I start Herxing too much, if I feel up to taking some, instead of skipping a dose/day entirely.
I am talking very small increments here. Like right now I am sitting at about 8/9ths of a pill. If I were to experience some bad Herxing tomorrow, I would maybe take 7/8ths, or 3/4.
In my personal layman's opinion, if you can get to stasis before you begin adding a new regimen/medicine, that will really help you to ascertain which med is doing what. I took the monotherapy approach at first because I wanted to know what was having an effect or not.
It's all highly individual, and you might not be able to take that appraoch, but narrowing your variables, and giving each new regimen several weeks to a couple months to get an idea of the baseline before you make any changes, can definitely help.
posted
I agree 100% with nenet, and use that approach in my treatment now when I must.
I have had Lyme for nine years now--been reinfected several times, which didn't help!
In the beginning of my treatment, I would tough things out no matter how bad things got, thinking that's what was necessary to get better, but it nearly killed me a couple of times--and I mean that literally.
Severe herxes can do more harm than good. We are all anxious to put this disease in check, but I have learned patience is important.
I know it must be frustrating, but slow motion is better than getting nowhere, or going backwards.
Posts: 962 | From Charleston | Registered: Jan 2002
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btmb03
Unregistered
posted
I was about to post the very same question...and I do agree with nenet. We are all so different, can't imagine how with such a horrendous variance in bacterial load, genetics, detox, etc. we can all be expected to sail through herxes.
I'm in the middle of one right now and frankly didn't take my dinner dose. I probably wouldn't do it that often but am also around my cycle and with the prostaglandins and heightened inflammatory state it would be the last thing I needed - more inflammation/pain, flu-iness, more fatigue.
Kelly I feel the same way you do..I just don't feel I'm going to get anywhere due to my constantly having to stop re-start, get my body acclimatized again and again.
But then again if that's what our bodies can handle then I'm not going to argue with it. It CAN get better. I almost got to a full dose of an abx..then added a second and had a horrible reaction so am back to square one.
Hang in there, if you feel strong herxes are "harming" your body/mind, do back off..but let you LLMD know!! Good luck!
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Amanda
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Member # 14107
posted
I have had 3 LLMDs. One believed strongly in pushing through the herxs in order to get rid of the infection. The other LLMD felt the opposite, that it would do more harm from massive herx than good, and therefore it was better to back off from hard herxing.
The LLMD I see now says they could go either way, and they leave it up to the patient to decide which path to take.
There just aren't straightforward ansers to this disease, unfortunately.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
My LLMD feels it is okay to take a day or two off to lessen the reaction. But any more than that - stopping the treatment to later restart again - can build resistance.
Posts: 581 | From CT | Registered: May 2008
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lymeparfait
Unregistered
posted
Take a binder so yo will not herx long...cholestramine, apple pectin powder, chlorella, psylium fiber, or anything that will take the die off debirs out of your body..so it does not recirculate! Sme need this more than others...but everyone can beneift from binders!
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by lymeparfait: Take a binder
This is true for me at least. One of the best spirochetal endotoxin/etc. binders out there is Sarsaparilla. If you can make it into a tea and drink that twice a day, that has helped me a whole lot.
Stephen Buhner's book "Healing Lyme" discusses this and other Lyme and co-infection herbs in great detail. Sarsaparilla has had many positive studies, over many decades, in other spirochetal illnesses like Syphilis.
You can search the web via Google Scholar or Pubmed and find many studies regarding this too.
posted
I've had several LLMDs also--some of the best and most well known, and I know they did not always agree on when to push through a herx.
With my first LLMD, I was inexperienced with Lyme treatment, and he never said anything to indicate that stopping treatment and giving myself a break during a herx was an option--instead, he was usually inclined in increase the intensity.
That did cause permanent damage.
A case of Lyme encephalitis once caused brain swelling and inflammation so severe that it nearly left me a vegetable. Ironically, I was an inpatient in a hospital at the time.
I was surrounded by overwhelmed and overworked nurses who thought a quiet patient was a blessing, I guess, and did not bother to check on me enough to realize I had lost the ability to sit, stand, or speak.
I had a searing headache, severe photophobia, and was hallucinating, and everyone was blissfully unaware because I had become too sick to complain.
As a result, I have to take several different hormone supplements every day for the rest of my life to compensate for a pituitary gland that barely functions.
I tend to be a stoic person, so now when I feel my herxes are getting bad, I call my LLMD for his opinion.
Once while on IV, I began having auditory hallucinations that kept me awake all night, and the next morning, my home health care nurse came for his weekly check-in and found my BP to be 70 over palp--meaning the bottom number was so low he could not hear it.
I insisted I would be okay, but called my LLMD for his objective opinion. He was really sweet about it, because he knows my tendencies, but with an exasperated sigh I told me, "If you're hallucinating, it's time to take a break!" Now that I'm better, I look back and think, DUH!!!
The moral of this story (yes, there is one), is that herxes are necessary, but when they get bad, it's time to take a break and detox. And if you're anything like me, call your LLMD when in doubt!
Posts: 962 | From Charleston | Registered: Jan 2002
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