HealingWell
Search Close Search
☰

Bad night last night, bad morning - herx?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/8/2014 7:10 PM (GMT 0)
So the beginning of July when I started doxy...when I got to the full dose in a couple days, I had a 12 day herx - well, I think it was a herx..my back pain spread and increased in intensity...and my sleeps weren't as good.
When I backed off to half dose and cut out buhner's herbs...the symptoms subsided and I was back to pre-herx symptoms.
When I ramped back up again, I had a two day herx, but not pain - it was fatigue (which is one symptom I don't have with lyme) for two days. Is it considered a herx...when it's a new symptom?
I added zithro and went off doxy for a week - due to sun sensitivity in August - and had 5 of the best days since I've been treating. Then LLND took me off doxy and zithro...and put me on Ammox.
I reached full dose a few days ago...and last night...had a bad afternoon...felt weak, light headed in grocery store...and bad back pain last night, and bad sleep - had internal tremors. Woke up this morning - and sore feet. (the feet symptom has been coming and going - thinking bartonella)

Okay - so herxing is a good thing, right? But how come if I have herxed a few times...that when I'm not herxing...other than the five days....I don't have improvement? I go back to the pre-herx state. Is it possible it's still early for me? Just been treating for a little over two months now? Am I expecting too much? Is two months early to expect an improvement that I feel every day?
Posted 9/8/2014 7:45 PM (GMT 0)
girlie,

I don't know how I feel about all this herx/no herx stuff. It seems so strange to me. I started doxy and I got much better but my body couldn't handle the antibiotics. Then I switched over to naturals and tanked, haven't felt well since. So I dropped all treatment as you know. The mold remediation got me a little bit of health back but my burning mouth has never gotten better. So im getting my amalgams out to see if that helps. I just never had one day where I felt well. I thought lyme was supposed to be ups and downs. I never had an up. If you don't have any ups at all, then maybe you have other issues going on with the lyme. Before I waste more time treating ive gotta explore what else is going on with my system. I went to an immunologist, who scratched his head at me. Story of my life! Maybe your Dr C. can help look at other things for you. You should get an up day every once in a while.
Posted 9/8/2014 7:48 PM (GMT 0)
Louise - when you say an "up" day...you mean feeling no symptoms?

I have had better days...not many, but a few where I'm not feeling all symptoms...and the ones i'm feeling are muted.

I have not had a single day when I don't feel any symptoms.

A couple of my symptoms have left , or almost left: On most nights, my sleep issues (anxiety/panics/sweats) have resolved.
And, during the day I'm not getting anxiety anymore.
But, the pain is still there daily....and the vibrations...and I'm having more "head" issues.
I have a phone appt. with Dr. C. in a couple weeks...
I'm just wondering if i should have stayed on zithro...as when we went on our mini-vacay I was on zithro...and that's the best I have felt. Was it just because I was excited and happy to be on a holiday and spending time with my 21 yr old son...who, even tho he lives in town...I still miss him.
Posted 9/8/2014 8:08 PM (GMT 0)
Keep in mind that tomorrow there is a full moon. Last night su*** for me too.
Posted 9/8/2014 8:31 PM (GMT 0)
I was great on metronidazole, my magic pill. I added azithromycin Friday. Yesterday was bad, but today is horrible. Pain so bad my oxycontin and dilaudid aren't touching it.

So, is it a herx or the moon?
Posted 9/8/2014 8:32 PM (GMT 0)
Yup... I thought my Lyme was done. It always flares a couple days before the full moon for me. 4 week full moon cycles. In 4-5 days you will feel better.
Posted 9/8/2014 8:34 PM (GMT 0)
When the moon comes... Lyme starts a growth cycle and also does epitope switching to confuse the immune system. Lyme does this once a month. I find it happens a couple days before the full moon.
Posted 9/8/2014 8:48 PM (GMT 0)
Shouldn't good days outpace bad. I guess I'm doing alot more than before, but I just feel crappy doing it. I'm house bound but trying to make myself go out. I haven't yet had a day where I feel normal.
Posted 9/8/2014 10:17 PM (GMT 0)
Louise - I think at some point in treatment - good days will outpace the bad. I'm just wondering when...and if I'm on schedule.

I have pain every day....on my good days, it's dampened down for most of the day.
Posted 9/8/2014 10:30 PM (GMT 0)
MM - have you been treating since May? If you have, then I guess I may be overzealous in thinking I should be further since I started in July?
I thought I had read some posts of people who are getting better now, that it took 3-4 months before they felt improvement??

I'm getting close to adding back the CC and JK - Dr. C. wants me on them with the abx.
I'm thinking I may just start even before I get my mail order. I have some leftover from the Health fd store...so may as well use them.
Posted 9/9/2014 1:06 AM (GMT 0)
Yes, Mike, I am continuing - especially since I haven't given Dr.C a fair chance at helping me yet. I was pretty much self-treating prior to a couple weeks ago...so I'll let him weave his magic.

I have had two, maybe three herxes along the way...which is a good sign...I thought maybe coincidence...but I looked at my notes..and both times it was soon after getting to full dose of an antibiotic. The first one after doxy, and this one after Ammox.
So, it looks like it's a herx to me.

Do you feel you herxed after starting each of the antibiotics?
I thought you did have a herx...at one point?
Posted 9/9/2014 1:09 AM (GMT 0)
Oh - Mike - I just reread your prior post - and you said you weren't sure you herxed on the antibiotics...but now the herbs maybe...well that's a good sign.

I think from May until July when I was doing the Buhner protocol for lyme I was getting a wee bit better...but no herx.
Posted 9/9/2014 1:21 AM (GMT 0)
Girlie—

Sorry about your bad days… I am following your progress and a few others who are in treatment closely since I'll be starting w/ abx soon… so I am not qualified to speak to your herxing issues.

But I have a general question to you all about herxing. Does herxing occur according to the lyme, babs, bart 4-5 day or 4-5 week cycles? Or is it simply a crap shoot?

-p
Posted 9/9/2014 1:29 AM (GMT 0)
Pirouette - From what I've been reading...it's mostly a crap shoot...but quite often happens after several days of starting a new antibiotic. That's why I'm attributing my increase in symptoms to a herx...because twice it was a few days after I ramped up to full dose when starting a new antibiotic.

After that initial herx...maybe it does follow a schedule? hopefully some veteran herxers will chime in.
I thought you were starting IV antibiotics?

Mike - so - you're treating Bart? (I guess the JK will also attack the lyme)
Posted 9/9/2014 1:36 AM (GMT 0)
Yes—I was supposed to start last Wed but LLMD wanted to do a few more tests. Plus, the hospital closest to me is not lyme friendly so she's making a few calls to deal with that and she thinks I could get coverage for nurse care at the beginning so she's arranging that as well. Hope to start this week. I am so grateful for the delay—I was not ready yet. I know two people who are now wheelchair bound after starting abx so I needed a little more time to square things away in my blymie lymie brain.

MM—
You're taking Japanese Knotweed for bart? I'm on high doses right now due to inflammation—I didn't realize it was also a tx for bart. I've had no adverse reactions to it so far...

-p
Posted 9/9/2014 1:52 AM (GMT 0)
Mike - Which part of your protocol treats the myco?

Pirouette - wheelchair bound after starting the IV abx? Yikes, that is scary...did they have lyme symptoms for a long time prior to treating?


My LLND is very optimistic. He doesn't consider my length of time is hard to treat - I've had it about 10 months before starting abx in July.
He's either very optimistic...or just being kind to me...and not wanting me to worry.
He said he would like to see 40-50% improvement in 4 weeks time - I think I'll be disappointing him. cry
Posted 9/9/2014 2:05 AM (GMT 0)
two months is still early with lyme. I wrote in my other post I felt some better at 3 months in, and it is a bit hard to remember but it may have even been 4 months! It takes a long time. Just keep going! You can do it! And some people say rifampin is good for bartonella so maybe ask your doctor about that.
Posted 9/9/2014 2:18 AM (GMT 0)
Girlie—

Yes—one of them was definitely having severe problems before abx but they are both like me—chronic, late stage (15 yrs for me) so that might be the difference. 40-50% improvement in 4 wks is an awesome goal… let's hope you get there. Even twice that amount of time would be a solid goal.

MM—
that is very interesting—had no idea it was part of Buhner's but I don't remember much these days. Hope it is impactful for you. I'm taking 1 full dropper twice a day. But I have had little to no reactions to any of the herbs I've been taking—all at high doses. LLMD is having me continue while on herbs.

-p
Posted 9/9/2014 2:42 AM (GMT 0)
okay - I might burn the house down...

sorry - off topic -

I put some new potatoes in a pot on the stove to cook - Got some chicken in the oven...bit of time before starting my salad.
Then I go to the computer just to check my emails. Then I go on facebook.
A little while later, sitting here at the computer..here some strange sound...what could it be, I wonder? huh? I get up go to the kitchen - only a few feet away, and the pot is boiling over onto the burner...the sound of it didn't even "twig" my memory....had no clue what it could be until I saw the water boiling over...jeez...my brain is a hurtin'
Posted 9/9/2014 3:28 AM (GMT 0)
Omgosh Girlie...Lol that you did NOT burn the house down....BUT plz take that to heart and be careful hun! From what I read today, it seems your getting deeper into treatment and this is when we get essentially "sicker", as crazy as it is, and have more brain fog and all that stuff. Im at the point I have to always set the timer with using stove and double/triple check everything else.

Quick story, I was driving the other day (I stay in my "comfort zone" county area when Im driving *alone* and need to run errands, etc.) I was coming out of a strip mall parking lot rocky drive area onto a 2-way road that has a very close merge from highway. I was so worried about getting in line for the light and getting in the lane to miss the car coming inbound on the actual road...I didnt pay attn to the merge from highway area! Just dont recall looking that way. Thankfully no car had came, but one could have been flying around the merge at hit me right on drivers side. I didnt realize until after that I failed to look in left merge area ....and surely thanked the Lord for that I was still driving down the road.

I mean, sometimes even people who dont have lyme do things like this in traffic but I know I am more prone because my thinking is somewhat "off" at times. At any rate, try to make a concrete mental note to check yourself with things like the oven and all. I know I def made a concrete mental note after the other day. I really dont drive unless Im having a 'good day' but I will surely make sure I am fully mentally alert with anything that could be disastrous possibly whether it be with driving or stoves etc.

Get you a nice loud timer and ALWAYS set it girl!! ;-)

Better safe than sorry is my motto. Im dissappointed in myself after the other day. When I do drive, I will drive looking like an owl with eyes wide open and double/triple check EVERY opening for sure.


xx's-Courtney
Posted 9/9/2014 3:45 AM (GMT 0)
I know - but sometimes I forget that I need to set a timer...if that makes any sense...
maybe I should make a decision not to cook on bad days...fuzzy-brain days...
What's funny, is I heard the sound of the water boiling over onto the burner...and I didn't even recognize it...jeez. maybe not so funny
Posted 9/9/2014 4:31 AM (GMT 0)
Girrrl, I know that whats scary when you are like "huhh-what could that even be"...."oh yeah I forgot that Im even cooking something"... then we're like Derdy der lol. My fridge is right next to stove and timer is a magnetic one and very visible so maybe that helps lol. I wouldnt remember to use the stove timer probably either.

I think you got it, dont cook & just order take-out/delivery when having your *fuzzy-brain days* hehe ;-))


xx's-Courtney
Posted 9/9/2014 4:37 AM (GMT 0)
...on 2nd thought, idk, maybe hard to find healthy take-out food though :-/

Ha! Maybe stick with timer then! hehe

Heres the one I got off ebay a while back...just a cheap-ola one but works good

www.ebay.com/itm/Digital-Kitchen-Count-Down-Up-LCD-Timer-Alarm-New-/191118306293?pt=LH_DefaultDomain_0&var=&hash=item2c7f89ebf5

I got purrrrple 8-)
Posted 9/9/2014 4:26 PM (GMT 0)
It worries me - that this has caused early onset Alzheimers or some sort of dementia...hope it gets better with treatment.
There's a couple of t.v. shows that I watch that are starting up in a couple of weeks...and I couldn't even remember the names of them yesterday. Crazy...
Posted 9/9/2014 4:40 PM (GMT 0)
Girlie & MM—

Me too. The tea kettle has been so abused. It had this gorgeous wooden handle and when I can smell the wood burning, and remember what that smell means I go into a panic. It happened over and over. FInally had to switch to boiling water in a regular SS sauce pan—don't trust myself anymore.

I also rear-ended a car the other day for the first time in my life. It was particularly horrible LA traffic and could not maneuver my leg to do what I wanted it to do and slam on the breaks fast enough. Really scary. I wasn't going fast—but the realization that driving is dangerous now is yet another punch in the gut. I'd been having trouble with my peripheral vision and not being able to ascertain where cars are beside me in relation to the driving lanes, which challenged my ability to know when it was safe to change lanes but I eventually worked through it. But now, I am grounded to driving only in town and it's stressful driving, too. I guess this is one good reason I don't work, so I don't need to drive often.

So I decided not to renew my car lease and rent a car for dr appts and run errands ($30/day). And I ride my bike for quick errands, which for some reason is easier/less painful for me than walking. It's working out so far.

Another year of this crap?

-p
✚ New Topic ✚ Reply