What in the world is going on NOW?

[Dedee]

So my daughter started to really go down hill several months ago when we switched her antibiotics to septra and amoxicillin (treating lyme and mycoplasma). I assumed it was herxing as she has done this before when we just jumped in there with full strength dosing straight off. So I consulted with the LLMD and we agreed to cut back on the dose of both and bring her up slowly to cut back on the herx reaction. We worked on this plan for a few months but nothing really improved. She continued to flair with horrible mood swings, defiance, depression, raging, etc. Finally, I decided I didnt think that it was a herx because it was lasting way too long. So I talked to the LLMD again about the possibility that my daughter can't tolerate Septra since she had never taken it before and we know she has methylation issues. So we stopped the Septra (continued the Amoxicillin)two weeks ago. Well, immediately her mood starts to improve. There was less defiance, less crying and raging. Just better over all. She still has her OCD and anxiety but the horrible mood swings etc had stopped.

 

So just when I thought I had it all figued out, the other shoe drops. The LLMD told me to give her a week or two on just the amoxicillin....going gradually up on the dose till we are at the optimal dosing then call back and we will talk about what we are going to add to it. So the last couple weeks she starts complaining with lots of physical things. Constant daily complainig with stomach ache. Going to the nurses office at school every day. Also, says she has a terrible headache everyday. Problems with her eyes, seeing floaters, blurry vision. She is saying when she tries to practice soccer that she gets short of breath and her heart is racing. I feel her heart and it isn't going that fast. Just feels like it to her . Yesterday she complained so much that she thought she was going to throw up that I let her stay home from school. Sometimes she says she feels the throw up in her throat. Thinking it may be reflux, I got some over the counter pepsid yesterday and gave it to her, but it didn't seem to help any.

 

I just don't know what to do......I'm not sure if the antibiotics are making her stomach hurt or if her stomach hurts because of the lyme. When she was little she ALWAYS complained her stomach hurt. Once we started treatment on a regular basis, she didn't complain nearly as much (maybe once a week). Now it's constantly, all day long. She even asked me to take her to the doctor. Her poop is normal. Not currently constipated, though that is frequently a problem for her. I called her LLMD yesterday and left a message but they haven't returned my call and are closed on Friday's. Please, does anyone have any idea what I can do to help this child?

 

Dedee (Sorry it got long)

Edited April 12, 2013 by Dedee

[philamom]

Dedee- this is my exact story- stomach, headaches, gerd/almost vomiting, except its been going on for a long time (at times - really bad, like right now). Please share any information you receive from your doctor.

Edited April 13, 2013 by philamom

[Dedee]

Lol...yes I just saw (and replied) to your post on another thread. It's strange that both of our kids are only on amoxicillin and both seem to be experiencing the same physical symptoms. What is up??? How much amoxicillin does your daughter take and how much does she weigh? I'm not comfortable with dd only taking amoxicillin but worry about how her stomach will react to more antibiotics. This is very frustrating.

 

Dedee

[philamom]

My daughter is on 500mg twice day.

She was also on this amount when she took a combo of abx for lyme/bart. When she was on the combo of abx, these physical symptoms went away. We have only been able to resume Amox though.

[pr40]

did either of you try a diet change like gluten free? how about methylation intervention (mb12 and so on)?

[Dedee]

What other antibiotic did she take when she was doing the combo and why did you stop it? How much does she weigh? My daughter weighs 75 lbs and she is supposed to be taking 750mg twice daily. Right now she is only on 500mg twice daily. We are increasing to 750mg at night starting tonight. We will leave the morning dose at 500mg for now. Trying to go up slowly till we get to 750mg both morning and night. LLMD says that amoxicillin only works on lyme when at high doses. When I did some research from Dr. Burescano, he said the same thing in one of his papers. Still seems like a lot though.

 

Dedee

[Agnes26]

Could she have strep while on Amox? Sometimes when I get strep, I don't get the sore throat. I just get an upset stomach and pounding headache.

[rowingmom]

My daughter is on 500mg twice day.

She was also on this amount when she took a combo of abx for lyme/bart. When she was on the combo of abx, these physical symptoms went away. We have only been able to resume Amox though.

Our LLMD contributed DD's stomach pain, nausea, headaches, palpitations and racing heart to bartonella. Her stomach pain was so bad she would have to lie down in the nurse's office at school a couples times a day. These symptoms have completely resolved with combination abx addressing both infections. Not sure how she would have responded to one abx only. We are weaning now, so time will tell.

Edited April 12, 2013 by rowingmom

[philamom]

Dedee- My daughter weighs 72 lbs. Recently, we talked about doubling the dose of Amox, but are now considering adding doryx instead. The combo was amox, azith, minocin, and tindamax on weekends. Stopped the tindamax after 8 months but continued with the rest of the meds for a few more months. Here is why we stopped everything:

 

Aug 2011- went to Jersey shore a week after a major hurricane hit for a 3 day vacation (visiting her best friend who lives there). She was doing pretty good and excited to see her friend. First day she was polite, well-behaved - no problems. Woke up the next morning with behavioral symptoms (defiant, wouldn't listen, wouldn't share - you guys know the drill). Came home and went for a throat culture for strep - negative. 2 or 3 weeks later had some labs drawn - d-nase was in the 600's and liver functions were in the 300's. All abx were stopped. GI symptoms and headaches returned. The following weeks she came down with erythema nodosum, fatigue, raynauds, dysautonia. She was then diagnosed with drug induced lupus (from the minocin). Rare, but it can happen. Her sed rate was in the 90's. She continued to go downhill and didnt show any improvement until we eventually got her back on amox the following February (yr ago). It took 3 months to get to 1000mg day. We tried to put her back on Azith, but she is no longer able to tolerate it.

Edited April 12, 2013 by philamom

[philamom]

dedee- my daughter is also having eye complaints (floaters, spots). One of the nurses from our immunologist office spoke with dd on the phone a few weeks ago to ask about her headaches. She thought the eye symptoms are due to the chronic headaches. Dd's eye complaints are not daily though (headaches are).

[Hopeny]

Deedee the symptoms and nurses office remind me so much of last year. My recommendation is to consider a new abx. There are other options for Lyme. DD's first treatment from the ped was regular dose amox 2x/day for 28 days. She was getting better and then tanked as soon as the she went off the amox. The lyme literate ID doc we first saw put her on high dose amox, 3 times/day. She started to go downhill. During those 17 days she even told me she was afraid her clothing was going to hurt her. That was a dark day. We pushed her around Disney in a stroller with her 2 year old sister. I had to get her a cane. When she made it to school I got a daily call from the nurse. On Day 17 I thought I was going to have to commit her at the ripe age of 8, she talked about suicide constantly and was also paranoid. I was terrified to take her off but it was scarier to keep her on. We then tried 5 days of Doxy and she came back, she started to improve within 24 hours after starting Doxy. Then nothing until we finally got into Dr B thankfully and he put her on Augmetin/Biaxin which helped tremendously. I don't know what it is about that high dose amox but it caused some scary responses. Lyme doc later theorized that her bacterial load may have been too high. I don't know what it was but even though Augmentin has amox in it, there was something about that combo that really worked well together. Also my little one developed a bullseye this summer. We did six weeks of high dose amox and I was sure we had it licked. Then her WB came back CDC + with Band 39 IGM, she was complaining of fatigue and had trouble getting out of bed. We started a combo of Zith/Cefdinir and it has seemed to do the job. I am just not that convinced about the power of amox on its own, from our experience, it really did not do much. Good luck

[philamom]

Agree. There is a few reasons why my dd is only on amox (not preference). She has a history of c-diff which makes things a little more difficult. And now the dile also brings a challenge. Plus, my daughter is extremely sensitive to most meds/supps/vitamins. And to add to the problem, she has a huge vomiting phobia.

 

I know it was mentioned here that nux vomica may not be good, but my daughter really likes how it helps her symptoms some. Its the only thing that we found that has given her slight relief, besides Zofran. But when we use the Zofran (occasionally), it increases the severity of her headaches.

Edited April 13, 2013 by philamom

[Dedee]

Thanks so much for all of the replies. I ran a strep test (with one of our home kits) and it was negative. The week-end was a little better than the week (only a little). She had a decent day Saturday, a few melt downs in the morning trying to get ready for soccer. Some fatigue while trying to play soccer but coach gave her frequent breaks. Sunday she had bad tummy ache and nausea and took a three hour nap. Hard time getting up this morning, but she eventually was up and off to school without too much fuss. Should be interesting to see if she has to go to nurses office today. I really hope the doctor's office calls back today. I just don't know how much longer we can go on like this. I'm not sure how the LLMD will feel about me insisting on changing off of the amoxicillin. I think she will want to just add something to it. Ugg, so hard to know what the right thing is to do.......

 

Dedee

[Dedee]

Well the doctor called back today. She is stopping the amoxicillin and starting dd on Zithromax / Rifampin combination. If this isn't enough she will consider adding a third but she didn't say what it would be. We will start with the change slow as we usually do to avoid a huge herx. I will start the Zith first and add the Rifampin in a week or so. I really hopes this helps. We used Zith before but not with much luck. Don't think we ever used it with Rifampin though. Anyone out there have luck with this combo alone?

 

Dedee