I was diagnosed w/ Lyme and Bartonella at the end of of Dec. Started Rifampin and a bunch of supplements to treat the Bartonella. Then about a week into treatment the NP had me start Doxy and Plaquenil. That night I got very sick and at first thought it was a reaction to the meds, but now I am convinced it was an unlucky coincidence of having a stomach bug.
So...I went off everything for two days and then started back on Rifampin and the NP had me take amoxy instead of doxy in case that was the cause of me getting sick. I am not taking the plaquenil right now either.
I have not had the herxing that everyone talks about, but I also don't have a lot of the symptoms that many people have. My main issue is this hyperpigmentation of my skin. I have had one or two bouts of fuzzy vision in my right eye (before treatment) and have pain in the fall of my left foot (which I was told is due to a sesamoid fracture, but interestingly it has improved since being on antibiotics). The fatigue I had a couple of months ago has gotten better (I also had a m/c in Sept which could have been part of the fatigue).
I am just wondering if I should be feeling something more and if I am not is there a reason for it? I would rather not feel sick/uncomfortable from herxing but if my meds aren't doing the job they are supposed to I want to know as to not waste time. Any advice??
Posted by AnnaOD20 (Member # 29942) on :
anybody??
Posted by bashibazouks (Member # 28286) on :
I don't herx either, but I have no idea if this is because some people just don't, or if I just haven't hit the right combination of meds yet. I know exactly how you feel, worrying about wasting time (and money!).
Posted by little_olive (Member # 28063) on :
"Stomach bug" while taking Doxy? Let me take a guess: You took the Doxy and vomited it back up? You can't listen to the bottle even though it tells you to take on an empty stomach, you have to take it with a small MEAL and then you can keep it down.
Ironically, I have the same reaction on Amoxil! I experience improvement, have less fatigue, but I don't herx! I think this is becuase Amoxil only treats infection in the body, not the brain. You need very high levels of Amoxil to reach the central nervous system (brain and spine), which by the way is what Doxycycline does... (Rifampin does as well but it primarily treats bart and the CYST form of Lyme, not much else.) And since both bart and Lyme primarily affect the BRAIN, that's where you really need the antibitoics.
So I would say, you should get back on Doxycycline and be prepared to ride out of the neuro herx... Unless you weren't infected for very long, then you might not have very much infection in your central nervous system compared to someone who went years and years undiagnosed.
Hope this helps
little olive
Posted by momlyme (Member # 27775) on :
I have heard of some that just get better without herxing. That is not our experience...
You mentioned getting sick on the Doxy... my son got sick when he took Doxy. I have since learned to take it WITH a meal. Eat a little, take the doxy, eat a little more.
If you started the plaquenil and the doxy at the same time you may have given your body too much at once and just gotten sick from overload.
Try starting one thing at a time. That way you know what you are getting an adverse reaction from.
Getting better is good! Glad you are feeling better... keep moving in that direction, it's a good one!
Posted by nybasketball212 (Member # 28309) on :
Keep in mind what most people are calling a herx on this site is usually just a drug reaction.
Posted by TerryK (Member # 8552) on :
Some people do not herx and just get better. It would help to know your dosage of meds. IDSA types prescribe 1/2 of an appropriate dose. You may not herx if your dose is too low. You may want to ask your doctor to do blood levels of the meds to make sure they are reaching theraputic levels.
I've never heard that hyperpigmentation is a lyme symptom. Is there any info that talks about that? I got hyperpigmentation from minocycline.
When people refer to a herx they are talking about an exacerbation of their symptoms, increased cytokines/inflammation etc... There can be an overlap between side effects of a medication and a herx but one can usually sort that out.
Terry I'm not a doctor
[ 01-17-2011, 11:06 AM: Message edited by: TerryK ]
Posted by AnnaOD20 (Member # 29942) on :
Thank you everyone! I got sick after a full day of being on the antibiotics so did not have any immediate reactions to the meds. I now believe I had a stomach bug ( I was sick every 20 mins all night long and have heard of others in my area who had a bug w/ similar symptoms). I am sure the antibiotics made it worse.
Currently I am taking one Rifampin 2 times a day and the dose is 300mg (so 600mg a day). I take amoxycillian 3 times a day (2 caps each time) at 500 mg (so total of 3000 a day). Does that sound like it is a strong enough dose?
The NP was saying that the hyperpigmentation can be from the Bart diagnosis (but looking at pics of Bart...mine doesn't have that stretching look).
When I read a lot of the posts on this site I can't help but wonder if I truly have this diagnosis (although I posted my test results in an earlier post and everyone thought I did) or maybe was lucky to catch it in the earlier stages?
Please let me know if you think my dosage is too low given your own experience? I am having blood work drawn soon so that should give some info.
Posted by TerryK (Member # 8552) on :
I've taken many different abx but not the two that you mention so I can't give my personal experience on those. I took levaquin for bart instead of rifampin.
One lyme doctor has written this about dose of rifampin "The dosage of rifampin is 300 mg per day for the first week; increase to 600 mg once a day after the first week."
I've read of others who take 3000 of amoxi but you might want to search the archives here to check dose.
Since it appears that you are likely on appropriate doses perhaps ask for blood levels.
To be honest, you have been in treatment for such a short time that I would not expect any major improvements this soon. It's entirely possible that you don't herx. I know it's hard but try to be patient.
Terry I'm not a doctor
Posted by AnnaOD20 (Member # 29942) on :
Thanks again. I spoke to the NP today and she is going to have my switch from the amoxy to doxy (starting tomorrow) and in a few days add in flagyl (sp?). She said the combo of doxy and plaquenil doesn't work well (not sure why she prescribed that to me to begin w/ then) so w/in the next week or so I will be taking rifampin, doxy and flagyl.
Posted by little_olive (Member # 28063) on :
Oh my, Anna. If you don't herx from that combination, I'm not sure you ever will! Please keep us updated, EAT with the Doxy, and drink lots of water: That's a very potent (effective) mix of antibiotics!
little olive
Posted by AnnaOD20 (Member # 29942) on :
So happy to post that I took doxy yesterday (3 times) and did not get sick! I felt a little queasy after the first dose (probably more psychosomatic since I was worried about it) and felt fine after the next two does. Still going to wait a little while before adding the flagyl. Just wanted to give a quick update!!
Posted by bcb1200 (Member # 25745) on :
I didn't herx for the first few months. ONce I started going after Bart, specifically with Rifampin. WHOA!!!
Posted by AnnaOD20 (Member # 29942) on :
Interesting...have been on Rifampin for a few weeks and not feeling any herx. 2nd day on doxy and doing OK. I wonder if it will just hit me in a couple of weeks. We will see!
Posted by little_olive (Member # 28063) on :
The morning dose of Doxy is always the worst for me; I have to eat the most food with it; the one at night I don't have to eat with at all.
I hope you are taking probiotics two hours after your antibiotics! When taking abx throughout the day it's best to take probiotics two hours after your last dose, before bed.
Posted by 17hens (Member # 23747) on :
I believe a macrolide must be taken with Rifampin. If not, the Rifampin becomes useless very quickly. Usually Zith, maybe Biaxin.
I don't think herxes are a reaction to meds. Herxes are a body's reaction to being overwhelmed by toxins.
Bart can certainly affect pigmentation.
My husband is nearing the end of a year of treatment. He was not "sick" like most when he started treatment and besides various Bart rashes showing up here and there, the closest he ever got to a herx was physical fatigue and worsening insomnia.
It took my husband 11 months of Bart treatment (levaquin and rifampin included) until he had no more Bart symptoms. He has now moved on to treat lyme.
I hope it goes as easy for you. If your LLMD is ILADS trained, trust her and don't worry. Just go with the flow, do what she says, and take care of yourself.
Posted by little_olive (Member # 28063) on :
The Burrascano Guidelines say Doxy and Rif are fine for a combo.
quote:However, there are reports of treatment failure even when higher doses and long duration treatment with doxycycline is given. In such cases, consideration may be given for adding rifampin, 600 mg daily, to the regimen.
Posted by Pinelady (Member # 18524) on :
Took me 3mths. - then it was bad bad.
And I had even done colloidal silver for 3 mths before that!
Posted by AnnaOD20 (Member # 29942) on :
I will be adding Flagyl in probably early next week (not sure if that is a macrolide). Thanks for mentioning that probiotics are to be taken 2 hours later. I think I was taking them closer to an hour. Maybe I will take it in the middle of the night. It is so hard to figure out the spacing of the meds and supplements (some w/ food some away from food). It is nearly impossible unless I want to get up throughout the night!
Posted by 17hens (Member # 23747) on :
Good to know, little_olive, thank you!
ps. love your name Posted by jpsmom (Member # 23895) on :
My son is on Zith/mino/alinia & doing hbot & doent seem too herx either, wondering if his lyme is gone. We have an appt monday with llmd & will see his bloodwork & cd57. I am glad he does not herx because I do for both of us!
Posted by little_olive (Member # 28063) on :
thanks hen
And that's understandable anna, i'm not looking forward to adding Doxy to my regimen because of that--but you don't have to take Doxy 3 times a day, in fact that's rarely done because its half life is 12 hours. You can take 200mg and then 100mg, or vice versa, which might make the probiotics easier to fit in. I used to take the 300mg at once because it was easier for my body; it's a versatile drug, just as rifampin can be taken once a day at 600 mg or twice a day at 300mg each.
Posted by AnnaOD20 (Member # 29942) on :
Interesting little olive (also love that name so funny to write)! I am still doing fine on the Rifampin/Doxy combo but right now take the rif 2 times a day (take it soon before bed and as soon as I wake up). I am on doxy 3 times per day but will ask my NP about it. I woke up last night around 2am and took the probiotic then.
JP'smom--how long has your son been on antibiotics for? I am getting blood work done at the end of the month. My CD57 was a 48 which surprised me since I don't have a lot of the symptoms many describe on these boards. Just hoping that even in the short time I have been on antibiotics improvement will show in my updated blood work.
I am hoping I just caught this in the early stages somehow and that I won't have to be on meds for too long.
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Please keep us updated, EAT with the Doxy, and drink lots of water: That's a very potent (effective) mix of antibiotics!![[group hug]](graemlins/grouphug.gif)
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