posted
I'm curious about how much variation in symptom severity and Herxing those in remission (or near so) experienced LATE in their treatment.
I've been treating for 20 months (oral pulsed combo abx) and overall I would say that I'm improved. Don't know when I got it, but went neurological in '07.
This spring, my LLMD told me I may only need to treat for ~6-8 more months given my progress...Exciting prognosis!
Very recently this summer, I experienced a big Herx/flare from a combo of oral abx that in the past I was able to tolerate well.
I keep thinking I'm close to done, then I get a setback. I'm thrilled for the improvement, but frustrated at how precarious it seems to be. The worst of this recent Herx lasted a month, and still isn't totally cleared out.
For those who've improved or are near remission through abx treatment, did you still experience big oscillations, even on the home stretch of treating?
I'd still like to think I'm close to done treating, but I'm feeling discouraged.
Thanks.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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onbam
Unregistered
posted
I've never had any herx in the 3 years I've been treating. I either experienced improvement, generally becoming noticeable at 4-6 weeks into regimen, or did nothing.
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Wonko-I can't answer your question but I'm wondering the same thing. I'm in the home stretch as well, keep thinking any day now,. I'll be in remission. But, one set back after another.
I'm starting to focus more on testing now to see if we can pin down what is still keeping me from being well.
Posts: 1104 | From N.California | Registered: Jan 2008
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I had a repeat Fry labs smear, showing there is still a coinfection in my blood but in lower amounts than before.
I had a repeat Igenex western blot, just the IgM, that showed some bands but only at the + or IND level.
I had a lot of standard blood tests that show I have high inflammation and a sluggish thyroid, but nothing stood out as attention.
I do at times worry/wonder if there is something else going on or if there is some yet un-addressed piece to all of this. But if so, I'm unsure of how to pin it down.
I can literally have my best and worst days in recent months occur back-to-back. Or I can start out ok in the AM and be awful in the PM. It is difficult to manage and it worries me that I may be dealing with this longer into the future than I'd hoped!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I feel you, Wonko. That is how I am. I feel terrible in the am and do great the second half of the day. One day I feel good, the next day I feel like crap.
It's miles better than being sick all day, every day like in the beginning, but that's why I'm also wondering if something else is keeping me from remission.
I must say, I added flagyl as I've never been on a cyst buster and i'm feeling a bit better.
Posts: 1104 | From N.California | Registered: Jan 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I completed my lyme treatment over 5 years ago, and I am still symptom free.
Late in my treatment, I was normal every day except when having a babs flare. The flares were less and less severe until finally they no longer occurred.
Then, my doc treated me for 5 more months because winter was coming on and he won't let anyone stop treatment in winter.
So, my experience was no big oscillations for the final few months in which I still had symptoms. Just very small, nearly unnoticeable flares--like having an overwhelming urge to go to sleep all of a sudden for an hour in the middle of the day--on the appointed babs flare day.
Then, finally no more of that even. Just normal every day. Then, 5 more months of taking meds while totally normal every day. It was tough to do that for 5 months.
So, if you are still having some pretty good reactions to meds, it sounds like killing is still going on.
Be patient. You will get there if you just stay the course.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
onbam, how interesting that you didn't feel any bad Herx symptoms. Since you recovered, sounds like treatment was effective even if you experienced it differently.
TF, Thanks for the reply. I figure I can't be that close to done if I'm still having these big dips, thanks for describing how your treatment went for you near the end.
Thanks also for the remark about not stopping in the wintertime. I'm on a break (as recommended by my LLMD) for now to get over my big Herx of July, but I do hope to be back on treatment before winter.
spring, I agree that it is very hard to find what will work for a given individual. If there was a magic silver bullet, we'd all be cured by now.
Looking back at the events leading up to this big Herx, I can see that changes in my routine may have set me up for such a dramatic reaction:
I moved, started a new job, and had stopped my exercise routine (because of the previous two). My eating habits were also thrown up in the air, as it took time to set up my kitchen again and to get the hang of the local grocery stores.
I'm working hard now to establish new routines that will work for me in my new surroundings, including getting back into regular exercise and better eating patterns.
blink, good luck with Flagyl. I never took that one, but was on Tindimax in late '09. It threw me back almost to square one, but I dug back out of it a heck of a lot faster. I do think that it helped, but it was a difficult process.
And yes, this is a lot better than being constantly sick around the clock. I definitely have compassion for those still in that situation.
But being "partially well" with an invisible, secret (at least that is how I keep it from my employer) disease carries its own challenges, including bearing the brunt without letting others around you in on it.
Dealing with the turbulence going on behind the scenes, while still keeping a straight face with a smile, can be exhausting. And I worry so much that when I'm too sick to work well that others just see me as lazy. It's tough to make a good impression when you are secretly fighting with one hand tied behind your back.
But I do think I'm getting there, even if not as quickly as I may have hoped.
Thanks again for the replies.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
springshowers-what did you do for detox. I'm thinking of stopping abx and detoxing and building my body back up with minerals and supps.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Wonko, I took a break from ABX when I was near remission, and continued to improve. I went to my maintenance regimen of Samento/cumanda 12 days switching each one, with grapefruit seed extract daily. I had found out I have 2 of the 5 detox pathways blocked, and really have been concentrating on detoxifying.
After a few months of "almost there", some symptoms started to get worse, and I also got candida symptoms: I had started to relax on the diet restrictions. So, I'm back on a softer ABX regimen, and am barely herxing, but the symptoms are slowly getting better.
In my case, I'd say I herxed horribly when the infection load was high, and I was on a lot of strong meds. Once the infections were almost under control, and I began detoxing every day, the herxing has been very slight, with little ups and downs.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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