Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Please help, do you think this is a herx or a relapse??
Thanks for any thoughts you have.
Taking malarone and increased amoxy is kicking my butt this month.
I started on malarone, 250/100/day, about three weeks ago after testing positive for babs. I've been herxing like crazy since starting malarone, which two doctors told me should be easy to take.
Having great difficulty sleeping, chills, fatigue, general spaciness.
Then, about 10 days ago, I increased my amoxy daily dose from 7g to 9 g/day, as instructed by my llmd (who I will not see until next week).
Thus ensued another week of low-grade fevers. And many of my worse lyme symptoms have come back over the last two weeks - tremors, muscle jerks, anxiety, brain fog, increased joint pain, vertigo. Not fun!!
Much of these symptoms had already improved greatly during my first 4 months of abx, but now I feel like I am back to the way I was before starting tx!
All this would not be a problem if I did not have to work. I cannot be too much of a freak at work, and I am having a hard time with the sleep loss and neuro-symptoms returning during the last couple of weeks.
At the same time, I notice some improvement in breathing and heart symptoms - my daily chest pains are largely gone for the past couple of weeks! My breathing is clearer!
But this good news is swamped by increased neuro-symptoms.
** Could this be a relapse - that the lyme has gotten abx resistant after 7 months on amoxy, and are having a field day reproducing in my brain again??**
Or maybe my body (lungs and heart) are feeling better b/c amoxy reaches them, while it does not cross the bbb.
Or, could this just be the worst herxing that I have had in about 5 months??
Would it hurt if I stopped taking the malarone for a while?
Can a person relapse even while taking abx?
I know we are not doctors, but I value your opinion during this difficult confusing time! Thanks!
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'd guess it's a herx. You've only been taking the malorone for three weeks, so it makes sense you might have a worse herx from taking something new.
I started Omnicef and Probenecid a month ago. I immediately felt worse than I had been feeling on all the other meds (including Mepron for babs). Yet, I still herxed even worse after about a month. I'm still in the middle of this herx. It's debilitating, I can't imagine having to work!
My daughter is home from school sick today ... hubby is working out of the house so he can take care of us. He does this when I herx badly ... I'm so fortunate he's able to do this.
Since I don't have to work, I take my meds right through a herx. My understanding is that the meds stay in your system for a couple days. It probably wouldn't hurt to skip a dose or two, or take less, in order to lessen your symptoms. You should call your LLMD about it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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trueblue
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posted
Hi VT,
I think this is a herx, I think this is the herx I'm having!
I was taking Malarone alone for 10 days or so and then added Amoxy, very slowly.
I tolerate Malarone pretty well, mostly got dry mouth and mild babs sx. Anyway, as soon as I added to Amoxy it multiplied the Malarone by I don't know what... a lot.
(I posted a while ago being afraid of going too fast on Amoxy, so started at 500 mg/day and added 500 working my way up.)
The thing is... every time I added another Amoxy to the mix it flared the Babs stuff big time. Somehow it does something with the amoxy, I suppose that's good but I was surprised at the intensity of it.
(I added Artemisinin last week and am now, I don't know what, lol )
It sounds to me like this is a big Babs/Lyme herx! I seem to be experiencing very similar things at a stinking 1500 mgs Amoxy, 1 Malarone and 2 Artemisinin.
Why not call the doc and get the ok, to lower the dose of Amoxy a little until you go to see them next week?
I hope it's easier and better soon.
Hang in there, twitching and jerking, I know how you feel. Ugh!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi SixKids and True,
Thanks so much for your replies --
Sorry to hear that you are not feeling well! It does seem true that misery appreciates, if not loves, company! At least it helps to know I am not alone in this $#*?#@ herxing.
The only thing that has helped in the last week is a hot bath with lots of baking soda, epsom salts, and a few drops of essential oils (lavender and chamomile).
SixKids, it must be very challenging to take care of sick children while herxing yourself.
I hope you are able to get some rest too! For me, the hardest part is the sleep deprivation.
I don't have experience with Omnicef, but it is good to keep treating through herxes, definitely.
True, good to hear from you -- we are running on the same herxing track!
Yes I agree, there seems to be something synergistic in the Malarone / Amoxy combo.
It is amazing that you can take Art at the same time, I gave up Art after 3 days due to this herxing gone wild.
Don't feel bad about being on 1500mg Amoxy, it took me many months to build up to 9g/day, and I herxed at every increase. Sounds like you and I both had a high bacterial (and protozoal?) load before starting treatment.
Especially, my bab symptoms have gotten so much worse, just as you said, since starting both malarone and the increased amoxy.
I will take your good advice and call, fortunately it is the weekend and I can relax a bit more.
If you are not feeling well, I definitely recommend considering cutting the Art for now -- but sticking with the amoxy and malarone.
Got an energy boost today from trying Ribose, a supplement others had spoken of on lymenet -- it really helped with energy today, though my brain is still on the shelf
Take good care and keep us posted on how you are!
cheers, VT
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Vermont_Lymie
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posted
^
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
VT, my husband has a flexible job, so he stayed home to take care of me. For me, herxing is not much worse than "normal bad." There aren't too many days that I am physically able to take care of my kids ... sick or healthy.
I'll look forward to getting the bacterial/protozoal load down ... It is a help knowing this is normal, not that I WANT others to feel this way, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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savebabe
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posted
I believe that Dr. B mentioned that a babs herx can go through to the 4th week. So, maybe if it was a herx it will pass in a few days. Sorry to hear you are feeling bad, but babs is a tough bug to kill and I would try to stick with the meds. Good luck.
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Vermont_Lymie
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Member # 9780
posted
Savebabe,
Thanks for the kind words, and it was good to know what Dr. B said about babs herxes. Hope you are doing well with your babs/bart treatment.
Brief update:
Have been 5 weeks on malarone now, and my lungs have not felt this clear in YEARS! It is a minor miracle to me. I have been diagnosed with asthma for many years, but in the past two weeks, all my coughing, pain on deep breaths, and chest congestion seems to have lifted.
Could that be due to the malarone??
Found some relief taking an antihistamine during the past two days, which helped me sleep. So I began to think this is all an allergic reaction to the amoxy, after all this time taking it.
Went up to 9.5 g/day amoxy, and still feeling, well, not so well. Awful joint pain and more neuro-symptoms.
Became convinced last week that I had simply relapsed, because of the return of my neuro-symptoms and joint pain! Fatigue and muscle twitches too.
Saw my llmd today, who certainly knows more than I do, and he says it is herxing. He does not think that my internal borrelia population have developed abx resistance to amoxy (my leading theory for how crappy I felt in the last month), and advised me to stay the course, but cut the amoxy daily dosage down.
Trueblue -- since you are having the same herx as I, I hope you are feeling better -- it probably is a herx after all!! Antihistamine made me feel better...
Take care all, VL
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SForsgren
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posted
Sounds like biotoxins - my guess is that you are HLA-susceptible and not capable of removing biotoxins....binders would be my next thought...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Vermont_Lymie
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Member # 9780
posted
Thanks Scott for your advice -- you are so knowledgeable on these issues! I have visited your great website a number of times.
Would LOVE to have any of your recommendations on binders.
I seem not to be able to tolerate chlorella very well; I take tiny daily doses and have worked my way up from miniscule to tiny doses!
Having seen the recent posts on chitosan, I figured that I should try to get that. Also, eating lots of fiber and the proverbial apple a day...
Thanks so much for any thoughts! Take good care, VL
PS: also got, from BioPure, their Phospolipid exchange -- but am afraid to try it in case my symptoms worsen. Does it pull out too much toxins at once? Would love to hear anyone's experience with that product.
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posted
I agree with Scott. Neurotoxins. I was having like a 3 month herx...didnt resolve until I added Chitosan. Ended within 24 hours!
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks nikkib, for your post and information. I am definitely going to order some Chitosan today. Thanks for your earlier thread on this! Glad to hear it worked for you, and I will post my response.
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stymielymie
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posted
too much amoxicillin!!!!! 1gm 3 times a day should be more than enough. that is way way over the recommended dosage for use of this drug. your doctor does not understand the effectiveness of amoxicillin search amoxil 9 grams a day is near overdose level, no wonder you feel bad. even 5 grams may be to much. too much abx is as bad as too much alcohol. too much is bad and will not help you get better faster.
it is not like gas where more gas will get you further. more abx can become toxin, also there is a very real posibility of abx resistance.
docdave
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trueblue
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Member # 7348
posted
Hi VL, I'm feeling better today. I cut my Amoxy dose down for yesterday and that seems better for now. Phew
I don't understand much about biotoxins and getting rid of them. I only know I do not detox well. What HLA#s would tell you that?
I'm still adding supps and stuff from my last LLMD visit so maybe something will make a difference.
Do you have a massive amount of pain things happening, too?
Take care, I hope this gets easier for you soon!
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi true,
YES!! My knee hurts like hell, and pain was never a major issue for me before. I mean, I have had muscle pains and awful joint pain with lyme and while herxing, but usually advil and waiting a day or two takes care of it...I have also had more pain this month.
We should try the Chitosan...
And I do not know what HLA's are -- have to ask Scott or look it up!!
Hi Doc Dave -- I REALLY value your expertise, but I have to go with my llmd, who is widely respected (I am told my other lymies) as one of the best. And in my experience, he is the most thorough doctor I have been to.
Thank you though for your comments here, I will look it up further and research (when my brain returns). Actually, up until the past month, I thought that taking 7g/day amoxy helped much more than the 3-4 g/day that I was taking. Was feeling pretty good, best in years....
At these high levels, it is supposed to cross the bbb, that is part of the rationale. My llmd relates the use of high-dose amoxy to the tx for syphilis, another spirochetal disease
I was fine and feeling better at 7g/day, but truly (as described above) beginning to feel unwell at the higher doses...
I looked up toxic dosages, and for someone my weight, it is about 16g/day. Since amoxy is flushed out of the system quickly, and I am drinking lots of water....I figured 9-10 g/day are OK. No?
Well, I am going back down to 7g/day after my visit today...will see how I feel in one week. This is the second llmd that I have seen, and for some reason, they both want to keep me on amoxy !
thanks so much for your thoughts, take good care, VL
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I would bet money I have the same Dr., and I haven't been rx'd Amoxy, I just have a feeling.
But, I wanted to say, that the last symptom I got was trouble breathing, and while other symptoms were getting better, it wouldn't budge.
After three days of Malarone my breathing got horrible, I felt like I was drowning. But it cleared up within two weeks and now my lungs are like superlungs, I think struggling with breathing was so much work, it was like a work out in itself.
But if it hadn't been for the breathing improving there is no way I would have kept taking Malarone. My head hurt so much on Malarone I was making deals with myself to stay alive. I had twitching, sweating, anxiety, jerking, pain, false memories.
It was worth it. After 5 months of Malarone, I switched to Mepron, and everytime I think that my head doesn't hurt anymore, I find out I was wrong, 'cause it just keeps getting better.
If your breathing is better that is a great sign.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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What happened to you sounds exactly like what happened to me a few weeks back. I started malarone, ceftin and zith. After 5 days I thought I was going to die. Then I posted here for advice.
I called my llmd who told me to stop the abx and just take malarone for a week. I got my life back after about 5 days. It was the worst herx ever. I felt like every symptom I ever had came back all at once. I am waiting to hear back from my llmd to see what to do next. He thinks I may need iv abx because my stomach was acting up.
Anyway, with that said, I guess I should be happy I was herxing that bad to bring the load down but it was not pleasant.
Good luck and know that I am thinking about you. I know how you feel. From what I read here, babs is not easily treated.
Love and prayers,
Karen
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