Questions: amoxicillin vs doxycycline? + then - test results meaning, & more

I don't want to leave you hanging so I will quickly write this and someone else will be along shortly.

The lyme test measure antibodies and at any given time you can be producing more antibodies than at other times.

Lyme shows up and then sometimes it goes into hiding. It moves from our blood into our tissues.

Sorry, I have to get now but someone will be here with a better and more detailed explanation.

Thank you so much Peteza! That is really helpful and also really scary. So potentially these horrible bugs are hiding in my body tissues?

Thank you so much Girlie! Both tests were just through my primary care doctor. ARUP laboratories is the name.

I am taking doxycycline extended release 100 mg twice a day.

I haven't picked up the amoxi yet - I do not think she would've prescribed it the way you mentioned since she not a LLMD.

That is really helpful about the treatment duration even if you switch to a different antibiotic category.

Is that bad to switch antibiotics? Can it create super bacteria?

I am truly thinking of trying the amoxi. But I am worried about if I could have an allergic reaction. I do pray that I would be fine if I try it.

Thank you so much again.

Post Edited (H Mommy) : 8/2/2016 10:03:10 PM (GMT-6)

No..switching abx is not bad...it won't create a super bug.
But, you do want to try and stay on one now for several weeks.

Many of us have tried an antibiotic..and had to switch.
I stopped taking Azithromycin because we thought it may be responsible for the rash I developed.

Remind me - what are your symptoms? And are they getting worse..and are you getting new ones?

I just started making a symptoms log. I can copy and paste it but it's long and I hope that won't be bad.

Lyme symptoms

First symptoms noticed:

-Numbness on top of left foot - tingly feeling like that part of foot was asleep (think started at least in June)
-calf muscle soreness/tightness while walking
-fevers began at end of June (only started taking temp after June 30 dental cleaning as I was worried about infection. My gums bled a lot during the cleaning and the areas behind my two bottom last molars were swollen and painful. Then I started noticing pain in a sort of nerve pain way in my upper right molars. Then noticed a sore throat.)
99-100.5 degrees f.
-started feeling really weak and just really unwell
-July 4 felt too weak and sick at fireworks and we had to come home
-started noticing a few random bouts of diarrhea. Not normal for me.
-quickly started noticing electrical zap feelings in my wrists and legs.
-started having joint pain in my left knee and left hip which would come and go after those first two weeks of July. Then started noticing joint pain in my shoulder/where it connects to my arm.
-began noticing I would wake up at night feeling freezing cold and then wake up later boiling hot and sweaty. Thought it was just some passing thing.
-started having trouble remembering things. One day when paying the mechanic over the phone I couldn't remember our address and when I said it I thought it sounded wrong but it was correct. Was opening incorrect cupboards and forgetting what I was doing. Actually when I think about that, that had been going on for some time. Maybe a few months. At least since June. But it started getting worse once the fevers started.
-noticed a worsening sharp pain at the bottom of my liver - sort of like having a stitch in my side but would last for a long long time and I just kept hoping it would stop. That was at least since June. I attributed it to my constant liver pain from my intrahepatic cholestasis. But did wonder if I was having worsening disease. I was noticing the pain lasting longer and getting more intense and happening more frequently.
-started noticing weird sleep stuff - like one night I woke in the night holding my iPod. It is always beside my pillow but I don't ever pick it up and clutch it in my sleep. Then I noticed one early morning sleeping with my head pressed next to my son's head, I was dreaming and was trying to look at someone in my dream to see their face. In real life I turned my head towards my son (which woke him up) and I realized I had been sleeping with my eyes open which was bizarre. Also I never move in my sleep. That was just too weird.
-started noticing foggy vision when looking at my husband across the room.
-honestly when I look back and think about it, I began having shaking/tremor episodes back in January and then having severe fatigue a few months later where I couldn't even push my son in the stroller. It could've been unrelated but was not normal for me. After about a month and a half or two it did gradually get better. Also not sure if this could be related but started noticing heavy clotty periods starting back in July which I did talk about with my gynecologist and am not sure if it could have been related. This was a message I wrote to my GI Doctor on 4-13-16 after dealing with severe fatigue for months: "I have been feeling some classic possibly anemia type symptoms for about two months now especially during my menstrual cycle - short of breath, very fatigued, paleness, coldness."
-told I had Lyme disease on July 20 and started Ceftin 500 mg twice a day.
-started having racing/pounding heart episodes and really scary big skipped beats and weakness/complete exhaustion after starting Ceftin. These episodes would last several hours. Also started having frequent yellow stools but they weren't diarrhea, 8-10 bowel movements per day. Went back to Primary care. Did EKG after feeling the skipped beats in my wrist and hearing them through stethoscope. Caught PVCs and an arrhythmia on the EKG. Told me to stop Ceftin and start doxycycline. Had taken Ceftin for 6.5 days.
-was nervous to try doxy due to being very sensitive to medicines my whole life and didn't get it picked up fast enough. Missed 1.5 days of Ceftin. In that time right hand joints became painful and visibly swollen. Right foot from inside of ankle through bottom arch of foot became tingly/numb/painful. Noticed increasing zaps in my wrists and pain in my legs on the front of right leg and then left leg.
-started doxycycline Friday evening July 29.
-had a slightly racing heart right after taking it and had one episode where I woke up that first night and had a racing heart and skipped beats as well as uncontrollable shaking in my legs and sides. Was up from 3:30-6:30 and went back to sleep for two hours after everyone woke up. Woke up from those two hours soaked in sweat. Then the heart stuff began to decrease. Four hours after that initial dose I started to notice my fever felt a little less intense and I had about an hour where I started feeling better.
-fevers continue 99-100.5 degrees f
-second night on doxy could not sleep at all. Began to notice moments of feeling weepy and a heightened level of anxiousness. Felt absolutely exhausted but couldn't sleep. Every time I'd try to sleep I would have one or both of my legs jerk or it was really bizarre, I would close my eyes and it was as though I was starting to dream but wasn't asleep yet. Just bizarre.
-after starting doxy I started noticing red eyes from the inside corners extending to my irises of both eyes every night - gets much better by morning.
-have had a few nights where I've woken up sweating then went down to one blanket. Then woke up shivering.
-last night I woke up after only two hours from a dream and was completely disoriented. I tried to call my husband's name but am not even sure I said it. I was able to ask for light and once he shined his phone I became oriented. But I was wide awake. I had three bowel movements in the night and just couldn't sleep. Each time I'd try I'd have to get back up and go to the bathroom. I just felt wired and strung out. Just almost jittery and that's not normal for me.
-have noticed skipped heartbeats here and there with doxy but not as severe as ceftin. However, have had an hour today where they were more persistent. Still nothing like the ceftin.
-oddly noticed that the pain I've had for two years in my wrists from de Quervain's tenosynovitis was completely absent as of yesterday after five days on doxy. Not sure why or what that means.
-also noticed my day and night chronic liver pain has been absent as of yesterday August 1. I still get the sharp pain at the bottom of my liver that began more recently with the Lyme in June, but not nearly as frequently. After the bowel movements last night I had a horrible bile taste in my mouth (unsure if related to cholestasis) though and had a super dry mouth in the morning and keep getting a dry mouth (also unsure if related to cholestasis).
-last night when trying to fall back to sleep I had this bizarre feeling where I couldn't feel my feet. Not a numbness but as though they were not actually there.
-I went back to sleep this morning at 8:30 and woke up at 10:30 am covered in sweat.
-still getting tingling in my feet, hands, arms, legs. Pain in those areas and in my joints has decreased some.
-still noticing foggy vision as I had before antibiotics although sometimes it seems even worse.
-am noticing pain in my left and now right groin areas on and off where my lymph nodes are.
-episodes where my fever goes up to 100.5 and feel so weak and exhausted for 2-4 hours. Temp has continued to stay around 99-100.5

Post Edited (H Mommy) : 8/2/2016 10:22:32 PM (GMT-6)

And yes, I have gotten new symptoms. When I stopped the ceftin for 1.5 days I started to get new tingling/burning/pain from the inside of my right foot wrapping around the arch of my right foot where previously only my left foot had been effected.

I also started getting mental symptoms like weepiness, intense anxiety, and depression. They seem to come on suddenly and intensely especially during the fever/weakness episodes.

I am also getting tingling in my hands and wrists.

They are all sort of staying the same except that my right foot has definitely gotten less painful.

If I were you I would call the LLMD office and ask to be put on their cancellation list...if they have one.

You might get in sooner than October.

I don't know what the ehrlichia symptoms are. Usually it will be treated with the Lyme treatment.

Girlie said...

And another medication called Probenecid should be taken with it to help keep the blood levels of doxy high in the blood for a longer period (because of its short half life)
BUT - I do not know if Probenecid is safe to tske when breast feeding. You should research that and also ask your Dr. before taking it.

Neither doxy or Amoxy treat the cyst form of Lyme.

A simple mistake was made, but I wanted to be sure that it was clear, it's amoxicillin that must be paired with probenecid, not Doxy.

Hi H Mommy,

I am so so sorry you are sick like this. I read through your symptoms and so many were like mine! Just terrible.

Please get to an LLMD sooner if you can. Make the drive somewhere else if you have to. I thought I would try the traditional medicine route and it was just plain dumb of me. Regular docs do not understand Lyme and it leads to horrible suffering. (I can't wait t get proactive about this, I'm moving to DC for a job and plan to get involved.)

I had a bad reaction to amoxicillin (gave me GERD). I am currently on my third round of antibiotics (after two inadequate rounds with the "regular doctors". I wish I had stuck with doxy the first time for 3-5 months which is what two of my friends needed to get better.

My LLMD now has me on low dose doxy (50 mg twice a day) but that's because my system can't handle 2-300 mgs a day. My regimen is finally working but I am planning to stay on for months if necessary and if my body can handle it. Three weeks does not do it. Doesn't even put a dent in it, to quote Darryl Hall.

I took three weeks of antibiotics with the same western blot results as you, and within two months, my disease was back in full force.

I follow Burrascano's guide for supplements too. That's helping me.

I'm sorry you are dealing with this as a mom. I am a mom too and it just adds terror to your already challenging days with a young child.

Get well soon.

Girlie said...
I did say Amoxicillin:

"The problem with Amoxy is its short half life - approx. one hour.
You should be doing 3x daily dosing instead of 2x because of that.
Also the dose I was prescribed was 1000mg 3 X daily.
And another medication called Probenecid should be taken with it to help keep the blood levels of doxy high in the blood for a longer period (because of its short half life)
BUT - I do not know if Probenecid is safe to tske when breast feeding. You should research that and also ask your Dr. before taking it."

Oops!! I'm so very sorry!! I SWEAR I read Doxy!! LOL! I know, just because it's mentioned in the same post doesn't mean you were referring to it then though!!

Can I claim Lyme brain?? I've been herxing??? They are both true!!!

Gosh, I'm so very sorry, Girlie!!

Wow, that is a massive dose. My primary wrote my prescription for 500 mg three times a day...I am hesitant to switch to it still. I have a lot going on...since my second recheck Lyme test on July 27 came back partially negative, my primary got in contact with a local infectious disease doctor. He said I probably don't have Lyme but told her to keep me on the antibiotic in the meantime because he said it won't hurt. He was worried I might have a rare bacterial infection because right before my fevers started I had a dental cleaning and it can cause a rare infection. I had to go have blood drawn yet again today and it was a lot of blood for two blood cultures (they fill up four bottles of blood) and a repeat CBC. I don't know yet what's going on but my God I felt horrible after. My fever went up to 100.5 all day and I was absolutely the most sick and exhausted I've ever felt. I had already fallen back asleep this morning for two extra hours and after my blood draw I fell asleep for another 1.5 hours. Not like me at all. I feel really weak and extremely exhausted. I hope I have better answers soon. And I hope I start feeling better. My primary care thought if it is a bacterial infection from the dental cleaning, the amoxi is a better choice. But I haven't switched yet. I'm just not convinced it's not Lyme disease and possibly coinfections. And I don't know given my family history of allergic reaction to penicillins if I would have a reaction - I have avoided trying any penicillin my whole life. So I'm super nervous to try it and end up having a reaction. I guess if it is the bacterial infection I will have to try it or possibly even other antibiotics. But for now I am just too weak to put myself through that. I am just praying I start to feel better so soon because this is horrible.

While I'm writing, I'm wondering if anyone else on here can relate to my fever symptom? When it's down to 99.5 or 99 I get some relief from the terrible weakness but it stays at 100.5 most of the day every day and I just feel like I've been hit by a truck. Is an ongoing fever typical of Lyme? Even though I'm being treated? Still taking doxycycline 100 mg twice a day. Can fever spiking be part of a herx reaction?

I also wanted to mention that a couple of months ago I started having this bad lower back pain to the bottom left of my spine above my tail bone but below my hips directly to the side of my spine. It would come and go and I'm not sure if it's related at all...but in the past two days it has flared back up with a vengeance and it is so super painful. Can Lyme cause this?

I am just so confused about if I even have Lyme at all. I have no idea if any of what I've experienced is normal for Lyme or if I have some other disease instead. Apparently there is a disease which is very similar to Lyme called sarcoidosis. I just don't know what on earth I have.

I went to an allergist in the hopes that he would test me for allergy to penicillin but he wouldn't. He said my physician will have to keep an open mind about my diagnosis - he said that it could be Lyme or it could be something else. He asked me if I've lost weight and I said yes a little. He asked how much and I said I'm not keeping track but at the doctor's office scale I've noticed at least 3-6 lbs lost within a week or so. I asked him what other things it could be instead of Lyme and he shrugged and wouldn't answer. He only said that my doctor would have to keep an open mind after I told him my symptoms. What does that even mean? I don't know.

Thank you all so much.

Post Edited (H Mommy) : 8/5/2016 10:15:13 PM (GMT-6)

Fevers could be babesia ... a"slight negative test " is like being a little bit pregnant ....infectious disease doctors wont help either ..really watch under our skin documentary ...they told me mone was a false positive so they wouldnt have to treat and would not release western blot ....you can see them under the microscope ....please hmommy look into all modalities ,.get proper testing refinanc , get a loan ...do whatnuou must you are in a fight for .your life ...read while you can ...educate yourself its complicated bs game of a systemic multiple infections...it maybe on the nerves of your heart already ...babesia can be confirmed with a simple giemsa stain...

See if you can add in more detox methods to you day.

I agree with the LL Naturopath - about the ID Dr. Also, with the 100 mg doxy dose...being just maintenance dose.
...and if you're going to continue to treat with antibiotics, you should see a LLMD.


"I feel like I'm in way over my head with all of this." That is how most of us feel in the beginning.
Hang in there...keep coming here for support - ask questions.