LymeNet Flash: How do you know when you're better?

This is topic How do you know when you're better? in forum Medical Questions at LymeNet Flash.

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Posted by jo3 (Member # 6317) on :

I've been sick for some 7 years- sick without knowing I was sick,of course! I've been in treatment now for a year but I'm so used to feeling "something' that I don't really know what good means. I'm doing better than before but I know that it also depends on the meds and how they affect me. When does a Dr. know when to take you off? My CD57 is always low so that doesn't seem to be a great indicator either. I mean, if I still feel "lousy-ish" while on meds, what would I feel if I'm off them? Do you just go through a trial-run without meds in order to see how you're really feeling? I'm confused and I'll be having my monthly appointment next week(after a year now) and I'd like to know what to do. What's "standard procedure" in this non-standard situation?

Posted by groovy2 (Member # 6304) on :

Hi jo3
Before I started on meds I felt like
Death warmed over- 24x7--
Now I have days when I feel almost ok.
There has been hours that I felt Good.
You will know it when you get there.

The few times that I have not taken
meds for 2 days or so--ran out of meds--
I started getting sick again- FAST-
each time I lost Much ground.

I know if I had not screwed up like
this I would be better off now.
If I ever get feeling good
all the time--I am going to take
meds for as long as I can because
-- I Do Not want this stuff
coming back-- Jay--

Posted by docdave130 on :

theory is you should keep a diary . you should herx every 26-30 days with bb.
the herxing should dcrease every month if the bacteria are being killed. the last mild herx take abx 2-3 months past and stop,review and see how your doing.
chronic lyme WILL RETURN IT'S A MATTER OF HOW LONG YOU CAN KEEP IT IN REMISSION.

Posted by lla2 (Member # 2364) on :

I got to the point where I felt just as sick on as off the abx..time to give the body a rest..the longer i was off the abx the better I felt, as long as i detoxed and took my probiotics. I still had montly herxes.little ones, where my OWN immune system kicked into gear and was killing stufff..they got less and less each month..in between i felt great though.

our own immune system will sometimes go into overdrive and give us what seems like a herx reaction..that scares eveeryone into going back on abx..but it's mearly an immune response in my opinion...every hurries up and goes back on abx..but think about how LONG you'rve been on abx..how can anything be alive in your body??? reallly now?? it's probably just your own body immune response in overdrive givingyou the same feelings..

i started to take immune 'calm items' like the omega 3 and 6 pills that dr. b recommends, adn vit b6 and a good multi vit, along with magnesium..these all help to regulate the immune response , and calm down inflammation, adn suddenly my inflammation and symptoms subsided...

feeling great now. no sysmtoms , slight herx around period time..mostly just tired and headachy..but the rest..great!

so I guess I would say, after a long time on abx, give getting off them a chance..take the antiinflammatories for awhile..see if your own immune system will regulate without going into overdrive and continuing the systmpms that FEEL like lyme..

just my theory..

Lisa

Posted by beachcomber (Member # 5320) on :

Thanks, Lisa:

How long have you been off abx? I am on a pulsed dose of Bicillin right now and not feeling so great. Am going to talk to my MD about going off completely. Last time I did that I relapsed to the point I could not walk. But, I have hit a wall. Am at 50% and not moving forward.

Glad you are doing well. What you say makes sense.

Posted by Kara Tyson (Member # 939) on :

You know that you are better when Lyme is not the first thought in the morning and not the last thought when you go to sleep.

You know that you are better when you stop becoming a Lyme person and just a person with Lyme.

Posted by mlkeen (Member # 1260) on :

After the 3 month period of no symptoms our llmd can continue to treat for adult acne, probably a lower dose abx, maybe a course every few months, he is still working it out. He knows waiting until one feels like crap again is too long an interval between courses of abx.

Certainly the life style and diet changes will have to continue for best success.

Right now I'm thankful that I see this light at the end of the tunnel.

Mel

Posted by Ruffy (Member # 7146) on :

Funny you should ask. I asked my LLMD yesterday and he said it's a personal decision. For me, in the least, diagnostically, I would want the lesions cleared up and my SPECT clear.

I know another person fairly closely seeing Dr. P and he has a way of checking certain inflammation levels to monitor your progress. He deemed this person almost there yesterday as well.

Posted by liz28 on :

I'm not sure I agree with Doc Dave on this one (sorry, Doc, I know you've had a rough week) even though I'm still sick.

About three months ago, I started on an abx combination for Lyme, babesia and bartonella that worked quickly and efficiently. I went from disabled to working two jobs, jogging, and lifting weights almost overnight, with just a mild relapse every now and then.

Earlier this week, I felt so great--and so much thinner from the jogging--that I decided to try yoga, complete with spine twisting and hip cracking and all the other slimming poses. Within two hours, I wrung out a whole crowd of keets that were in hiding, went into a relapse that's lasted for days, but am slowly, slowly responding to the abx.

So I don't believe you have to have this forever. My vote is that you find the abx that really work, test drive them on mild relapses, then flush out the remaining bugs with exercise and clobber them. Obviously, not until you know your abx can control even severe relapses, but still... it's impossible to believe there is an infinite amount of these.

Posted by lymeinhell (Member # 4622) on :

After about 6 months of treatment and little by little improvement, my LLMD added TOA-Cat's Claw to my treatment regimen, and gradually began reducing my abx. Cut Rifampin dose from 600mg to 300 mg.

After 2 months of that, cut Flagyl dose from 7 days to 5. Next month, Flagyl just 2 days a week. Next month, began a weekly cutback of 1 pill every two weeks of Rifampin. So that when I got down to 1 Rifampin a week, then cut Flagyl to just 1 day a week.

This gradual cutback plan took almost 4 months, and was so gradual, my body didn't seem to notice it.

I've been off abx since November, but continue Cat's Claw. I feel 'normal' 29 days of the month. I also continue a very thorough vitamin regimen, and detox using the foot patches. I watch my diet and still take acidophillus - although lately carbs have begun to creep into my diet and I seem to have kicked the yeast factor.

Still have a teeny 'mini' herx predictably every 28 days. I go for IM Magnesium shots about every 4 weeks because tests indicate my levels are still low.

I've had Lyme for over 10 years and contracted Bartonella 2 years ago. I feel better than I have in a long long time.

I don't think I'm 'cured' (is there such a thing), but am grateful for where I'm at.

------------------
Julie G.
___________
lymeinhell

Posted by jo3 (Member # 6317) on :

Thanks to all of you for your advice- Kara I especially loved your thoughts- I really want to be a whole, healthy, energetic and super enthusiastic person again but the Lyme constantly reminds me, in one way or another , however slight, that he's still around!I will not lose hope though!

Posted by minoucat (Member # 5175) on :

Yerp, I think it's pretty individual, and for some poeople a lot seems to depend on follow on care, as Lisa described. Predisposition to LD/Co confounding factors, you previous history of treatment, how happy your liver is, all seem to play a role in the longevity of the remission/cure. You gotta know your own bod and what you're up against aside from teh bugs themselves.

I think there's a jumping-off point when you have to decide if the abx (or certain abx) are causing more problems than good. I'm at that point with tinidazole -- it makes me so desperately tired that I can't function while I'm on it. But it's done a lot of good. I talk to my LLMD in 2 weeks about going off it.

Is it mostly women experiencing the 28 day herx even after they are nominally well? Is it a hormone thing, do you think?

I'll be keeping a diary for the rest of my life, on the assumption that I'm in remission (hopefully life-long) but that I can control this disease by quick response if it should rear its ugly head again. And the diary is a great "am I better" meter.

Liz28, so happy to hear you're doing so well. Sounds like you're ready for the Lyme Dominitrix leather outfit?

Is anyone having problems with nausea and exercise? That's my biggest demon now -- I do exercise, but quit when I hit the nausea point, which varies. Again, I'm pretty sure it's tinidazole, but it may be that I'm forcing blood into bug hideouts when I exercise and tini is doing its proper job.

I know the hubby's doing way better because he's playing the guitar again. It's a lovely sound to me, for many reasons in addition to the music.

Standard procedure, jo3, is read the goat entrails, sacrifice a snurgle and throw it into the Sacred Volcano, and invoke an answer from the Oracle of Tweedle. It's in the ILADS guidelines, but you have to say the mystic words so that the invisible ink becomes legible.

Posted by Nancy-OH (Member # 3567) on :

I asked this same question a couple years ago. Here's what I have learned through experience.

You will get better painfully gradually. You'll experience gradual lessening of pain.

Maybe you'll be surprised when you wake up one morning and realize you lifted a grocery bag two days ago and your arms are not still hurting.

Maybe a loved one will catch you slightly running up a flight of stairs.

Then you'll realize it's 9:00 p.m. and you still feel good that day.

Your head will clear just a bit and you'll realize you read something that you actually comprehend! YIPPEE!!!!

You'll go a day or two without needing a nap.

My true test was when I went a whole month without any symptoms at all.

Then, suddenly, my LLMD released me and told me I didn't need to come back unless symptoms returned.

Well, that lasted four months. Now I'm back on orals, but he did say the pain will never be as bad as it was and it may only take a month or two on orals before I'm back in the saddle again!

Hang in there....believe it or not, this too shall pass.

Nancy